January 2004 & 2017

January Coffeetawk topic:

HAPPY NEW YEAR!!! It’s a brand new year. I get another shot at starting a whole new year fresh. It’s a miracle and a very big deal. What a gift. Picking a coffeetawk topic for the first month is a big deal. I can’t decide. I own it. My focus turns to Martin Luther King every January, for many reasons. Let’s begin with what a great man he was. Let’s add the legacy of love and unity he left that endures for generations. Let’s add a national holiday in January honoring Dr. King. This teacher knows something about holidays and why we celebrate each one with a day off from school. What about adding the dire need I feel for some morsel of grace and peace this New Year in particular? Let’s add that Martin Luther King was born on January 15th and our son Jason was born on the 21st. And I just found out that he was assassinated on April 4th, the day I had my stroke. Hmm. Coincidence? I think not. There are no such thing as coincidences! I knew the topic had to come from him. It just had to, in January. Quotes from the Reverend are not hard to find. His words are many and so inspiring. Social media, The American Heart and Stroke Association and the school curriculum send me his pearls of wisdom by the dozen each day in January.

Every time I decided on one quote to guide me for January, another gem came across my desk. Everyday I heard new truths and rejoiced in well known treasures. And so, this month I can’t have just one. I have two. Each speaks to a side of my heart and soul that is screaming for and demanding comfort. Both quotes move through me, stay with me and make me better for knowing them. Both offer me a valuable lesson to live by as I start a new year, determined to make it a good one. This month, at the start of this New Year, I need a good word in each hand to give me hope. The first one is,

 “I have decided to stick with love. Hate is too great a burden to bear.” Martin Luther King, Jr.

Two simple sentences: easy to read, easy to remember. So simple and yet so NOT easy.  Simple is good for me. I’ve proven that to myself time and again. The message is simple. But it requires action, repeated and repeated. That is the hard part for me. Love takes practice. It is not my default setting. I easily recognize that love is the way to go and hate is deadly for me. I make a choice to live in love. And I’m good about it, for about a minute. But life interrupts my groove. Then I have to choose love again and follow it up with a loving action. For me, the action is essential. I don’t learn or change by standing still and thinking. I have to move. I have to move again. I have to practice. I have to practice over and over. So I take a breath and think of loving acts I can do and do one. I feel really good when I am kind to others and myself. I have proven to myself that when I act lovingly, eventually I will feel loving. The feeling comes after the action. (Takes time…) I get a rush from picking up a scarf that someone drops behind them at the supermarket. I get a rush from taking Gus for a walk, that he waits too long for me to provide. Caring for Ciro in his final days (or months or years as the stubborn angel goes) with the gentle comfort he so freely gave me after my stroke, is a labor of love. When I see a friend and remember to ask them about something going on in their life, I am living in love. My heart grows when I give someone another chance. I love it when I call a child, not in my class, by their name which I remembered by some miracle. I wish them a great day or give them a compliment or just a simple smile. And my day is made by the smile they give me back. The momentum builds when I live lovingly. It gets easier. It is so simple.

       And then life happens. Oh, does life ever happen. And I do not mean big stuff like trauma or death happening that will set me to hate mode. I am really good in crisis. I am calm, cool, collected and seriously a source of peace and solace. It is a good skill to have in my tool box. I use it too often, sadly. But these CODE RED events are not what set me off. It is the little things that happen every day in normal everyday life that makes me hate!

I have to be around some pretty mean people most days. NBD- my students taught me that stands for No Big Deal. Mean people are everywhere and I’m not mean. So what does it matter? But it did and does. For a couple of years I tried to kill them with kindness. I was super friendly and shared my baked goodies with them. I went out of my way to find good, very friendly things to talk to them about. But that effort was not reciprocated. They ate the goodies and chatted if I initiated, but never returned with even one genuine smile. They didn’t change. I wanted peace and harmony and sisterhood so I kept putting energy into them day after day, and sugar too. And in fact, as time went on they began targeting their meanness on some of my near and dear. I was changing though.   I was getting angry. I swore I would never bake for them again. They had crossed the line. I continue to be friendly but make no overtures of friendship. I don’t like being around that kind of nastiness. I keep more to myself these days, and stay quieter too. I try to steer clear of their mean selves, but interactions are inevitable. I feel their hate. It gets near me and then sometimes, their hate gets inside me.

I don’t know why I let their hateful ways hurt me. (I recognize that even with the dawn of a brand new year, I am harboring and feeding some old and dangerous resentments. I gotta pay attention to this feeling inside me. I gotta stop paying attention to them.) They shouldn’t be getting to me. But sometimes lately, they are. And then I hate them and myself. That reaction is a big RED flag for me! When life happens and I react with hate inward on myself or outward on my fellows, that is a v. bad day for me.   I know that about me. My default setting is pretty nasty and not nice. With thought and practice, I am pretty nice most of the time. But when my reactions are hateful, impatient and intolerant, uh-oh! I know that about me. When I lash out in hate I feel like crap. I really do. I know it wasn’t the right thing to do. At that moment I have a choice. I either lash out again and add another nasty maneuver to the world or…I stop. I restart my day and find something kind to do. It is that moment of choice that I miss, a lot. To restart my day, I have to take a breath. I have to pause and change course. I have to acknowledge to myself that I effed up. I hate that. Ouch. But I have to do it. I gotta make it right if I am going to be happy in the day. I know not to let it linger. (But I am so tired right now. And bad habits are so easy.)

I love to procrastinate and I am so very, very good at it. But I can’t delay. My stroke taught me that. Seriously, anyone that has such a sudden life altering event knows that all you’ve got is today. Your life changed forever in the blink of an eye. The destruction and devastation and loss are brazen and bold. Such events are not subtle. That works for me. Subtle clues weren’t cutting it, in my life. I ignored the clues and carried on as I saw fit. And honestly, I wasn’t exactly lovin’ my life. Stroke and its’ kind, hit hard and there is no ignoring it, much as I tried. So, for me, I have to live in the day now. I have to be right; right sized and in right relation with my fellows, today. I cannot bank on tomorrow. And knowing that is a gift. (Even though right now I am saying it louder than I am feeling it.)

Fortunately for me, my Buddhist Reiki Master Nancy comes to me and gives me just the right help. Her loving message is a gift. She always told me that she allowed herself “5 f**k-ups a day” before she would get mad at herself. She was human and knew it. It’s a good idea for me to practice. Nancy shared it with me, often.  “Be gentle with yourself Rachel. You are a good person doing the best you can.” She would often say. I am so blessed by angels like her that keep talking to me. Prayers up, that I keep listening to those angels.

It is a good life, living with love. I know that. The alternative is death for me. I know that too. I have proven that to myself time and again. Hate…I know hate.

I hated me.

I hated my body.

I hated myself inside and out. It betrayed me that morning April 4th 2003. Stroke did that to me, is the tape I played continually in my head.

I hated life from that moment on because of my fear and rage and distrust. I hated me. It was that simple and that pure. That hate churned inside of me, poisoning almost every corner of my body, mind and spirit.

And yet I could not die.

I tried for a long time to die. I wanted desperately to be free of myself, a self that only felt pain, and had no power or purpose on earth.

I hated that I didn’t fit into my life. I could go through the motions of Rachel, but they felt horrible and pointless and agonizing, never ending.

The hate was all consuming and almost got me. I am grateful now that it didn’t.

There was just enough love in the corners of me after all. And there was much greater love around me. I know that now. I felt it, even then. I believe I was loved by angels like Jean Granny and Gramma Jean who kept me going until I could find some love for myself. The angels knew that I could change and love life if I could just let go of the old one. Angels on earth like Ciro and Lola kept watch and vigil. I wasn’t done with whatever I’m meant to do here. Feeding the love in and around me is the only way I stay alive today. It works. It matters. The hate is still there, inside me and around me. It circles and nips, but it’s starved. (If I am honest, lately I have fed it a bit. Not good. Need to stop. Gotta stop.) So, I won’t feed it, not today. And today I have to say thank you to Martin for this wonderful way to live.

The second quote from Dr. King is:

“Courage faces fear and thereby masters it.  Cowardice represses fear and is thereby mastered by it.  Courageous men never lose the zest for living even though their life situation is zestless; cowardly men, overwhelmed by the uncertainties of life, lose the will to live.  We must constantly build dikes of courage to hold back the flood of fear.”– From his sermon, “Antidotes for Fear” in “Strength to Love”

by Dr. Martin Luther King, Jr.

Here is the extra boost of good stuff that teaches me how to live life lovingly. I need that super intense lesson most of the time. Here is some of the good stuff that I know I have, courage. I just need to be reminded of it. I need to be reminded of what I can and must do, often. So fear, Yup…FEAR. I have been taught that FEAR can stand for Facing Everything And Recovering, or F#*% Everything And Run. The play on words keeps the choice up front for me. Most of the time now, I choose to face my fears with courage and life is good. Most of the time…because I continually do the work, I face my fears. But honestly, I find it hard not to let fear get me. I know that I have great courage. I know that inside Rachel is fierce courage and love which made survival of and recovery from my stroke, possible. I know this now and I am proud. I didn’t see this strength inside me before or long after my stroke. This courage is what eventually told me that I could change and love life, as a different and changeable person in this ever changing world. This courage told me I had been given a great gift of really living life and getting the most out of every moment, because of what my stroke taught me. This courage inside me and angels without me form a dike that holds back fear and lets me choose a loving life.

My husband has been going through some things of his own this month. Go figure. I am not the only one living life on life’s terms. He has to face some pretty big fears and make some big changes. It is difficult. He feels uncomfortable and insecure and self-conscious. I know what he is going through. I really do. It is difficult to have your outsides not reflect your insides, to feel that people stare or disapprove of you. It is tough. And I have walked through that. (I still do that, every day if I am honest. I still have to work at not calling the face in the mirror, deformed!) It took/takes a lot of courage. But I did that. (I do that.) I know it and I am very proud.

Every day I walk through some pretty big physical issues that are unknown to most. Some are called “silent diseases” because you might not see the neurological cuckooville going on inside 24/7, when you look at some one on the outside. There are conditions like stroke, forms of heart disease, M.S. and others that ravage survivors but you might never know it. I hope you never do. (I do have one friend in mind who is also a warrior like me. But she is more humble and won’t tell ya what she goes through and how hard it is to just look normal to everyone. But I am not so humble. I will tell you.) It is difficult. It is scary. It is exhausting. I am proud of the courage I have. So, when I am with my husband, I recognize my strength and have compassion for his struggle. I wish I was gentler with him. The line, “toughen up Fluffy,” is probably not the most supportive or welcome line he could hear from his wife. I will do better.

Most times in the past decade this dike is strong and I stand proud, secure in faith and love. But, this month I am a fear ball. I own it. I’ve been sick and that scares me. A basic cold or stomach bug to you is the next big stroke to me. This month, that is my truth. I have been checking my pupils in the mirror, a lot. Every day, mostly at night I stand in the bathroom and look in the mirror. Are my pupils even? Are they dilating properly? Are they reacting to light correctly? The old tapes play in my head and tell me to prepare for STROKE. (It’s coming and this good life is going to end momentarily. This time will you be so lucky? Stroke taunts me.   But my eyes look good, I guess. I know I am being irrational, but I do it anyway.

Politics. A harsh word. Stress at work. Drama. It all freaks me out and I am afraid of it. The cold in my right side, the stress headaches, and the muscle aches from sickness all conspire to get me. Insecurities usually minute grow into giants.  I know in my heart that I am safe and healthy, but I am so scared and sick in my head. I feel that weakness and vulnerability just like after my stroke. And I hate it. I stand in the bathroom and look at myself and know that the hate is very dangerous for me. I also know that it is unnecessary. I know that I am choosing it. I could let go and stop trying to control the world. I could take my life down a dozen pegs and simplify. And I would smile. But right now I am whirling and not really smiling. All I have to do is what Martin said; face fears and walk through them, hand in hand with my friends and family and Goddog. I have done it before. I have done it today. It truly works. I don’t want to be sad or anxious anymore. I don’t have to be. Martin is right. I think the pain has become great enough for me today, that I will choose love. I hope today is the day. I hope today I choose courage and love.

January 2003

They told me I have to go back to teaching. They told me that I am ready. I don’t know if They believe that but I still have to go. I don’t believe it. They agree that I am stable enough with my health and more importantly I have no more time left. I have to go to work to live, They say. I don’t agree but it’s not my call. I survived and this is what They say is next for me.

I try. I get out my school clothes again. Most fit better than they used to, size wise. I lost 30 pounds right after the stroke, one of the great benefits of losing your swallow. Very effective diet! Great results, fast. But the khaki pants and sweaters feel so foreign, not the comfy clothes of the past 9 months. I can’t get comfy in the old school clothes. My skin kinda crawls in them. I don’t feel like a teacher when I wear them, like I had hoped would happen. I don’t feel like me in them. Then again, who is ME these days? But I find them and they fit, size wise. I set the alarm. I haven’t really had to set the alarm because I haven’t really slept. Sometimes I do start to doze comfortably at dawn and I can’t do that now because I have to get up for school. So I set the alarm again.

I review emails and lessons.  The words and ideas get blurry in my mind. I think I know what They mean. I think most of it I have done before. But the words and ideas get fuzzy in my mind.   Reading is so hard for me now. I did well with the articles in the medical library last fall. It was good to read them on the screens or tables in the library at my hospital. I found out some good information, filed it in my binder and then got out of there and went home. The reference articles were good for me. But this stuff isn’t that stuff or in my hospital. There are thousands of pages of information about school and I feel so behind. My head hurts. I want to cry. But I can’t cry. My face wads up and the look and feel is totally subhuman. I don’t understand how I can possibly do all this. I don’t remember how I did all this before. I know I did. They tell me I did. But now it doesn’t make sense to me. The words are blurry. I see names of students in my class on the screen and on papers. They are in my class, but I don’t know them. I haven’t been with them all year.   They were downstairs for Kindergarten and now they have been with another teacher for five months. They are hers. I don’t know them. I don’t know what to do. I can’t do this. I am stealing the kids from another teacher. Kids were happy and settled with their teacher. Now I mess that up. I was settled in my routine too. I don’t want to do this. They don’t want me.

I look back at activities I did before and see if I can do them again. I don’t rest or nap during the day. I force myself to talk a lot more. I go back to work but I can’t do what I did. I am playing a role like an actor on a stage. But I don’t know the lines and can’t find the motivation for my character.

I used to have this impressive trick to get kids to drink their milk. Milk, white milk is so important in brain and bone development. But kids like juice and soda and chocolate milk. I made it my mission to convert the kids to the value and love of cold white milk. Kids are hard to convince so I made it a good show. My inspiration came from something my Dad would do when I was little. We were always outside stacking wood or building something. I loved being near him and “helping” him with the big jobs of the house and yard. I had boots and gloves like him. I’d watch how he did things, out of the corner of my eye so he wouldn’t notice. I couldn’t ask for help or how to do something, but I could watch and do a fine imitation. I would try to pick up a big piece of wood or try to move a monster load in the wheelbarrow. Of course I couldn’t do it at that size. Of course I couldn’t do it alone. But I’d try. And my Dad would see me trying. He came over to me one time and kneeled down in front of me so I could look in his eyes and be on his level. He held up his hand open in front of me and asked me to put my hand on his. My dad lined up our palms. His hands were so warm. I remember. After a few seconds he gently, strongly and gently, bent his fingers down over my unbent fingers. His hand was so much bigger and stronger than mine. He could easily bend at the knuckles over my fingertips with our palms still lined up. He’d keep his hand that way for a minute, in silence. Then he’d ask me what I noticed. What was different? I wouldn’t have to say a word. I knew. Being so close to my Dad and feeling his strength, seeing his size and absorbing his warmth and gentleness, I knew. I knew the power he had as a grown up, without him saying a word. I knew it because all kids are smart and given a minute to think without fear, we know. My Dad showed me the truth about kids and grownups and size and strength in way that inspired me to grow strong like him. He did not use his obvious advantage to humiliate or intimidate me. It was an absolutely brilliant technique. I remembered it always. I tended to talk way too much before the stroke. I knew I’d be better with my students if I channeled a bit of my Dad. So inspired by my Dad, I developed a technique to get kids to drink their white milk.

I’d stand on top a desk. That got their attention real quick. “What’s she doing up there?” they’d say with big eyes. Then I’d bend my left arm to show off my muscles or “pipes,” as I called them. “Oooh. She’s got big pipes!” They’d murmur. Then I’d seal the deal. I’d have a kid hang on my arm. Yup, the volunteer kid would wrap two hands around my bicep, lift their knees and swing and hang. They were secure on my arm swing. I was secure and strong and smiling big at this point. I could even bring them up and down cuz I drink my milk. They’d be freaking out impressed at this sight. They’d ask to take turns on the Miss Scanlon arm swing. They’d want white milk right away. It was great! It never failed. The consumption of white milk in my class would spike and maintain for a long time after that demo. But those days are over. I can’t balance on a chair let alone a desk. I can’t safely hold a kid. I can’t lift them up and down and swing them. I am not strong any more. I am 31 years old and unable to do what I did last year. I am not healthy. I can’t do it. And I can’t think of anything to get their attention. I don’t inspire them. I can’t think of ways to teach them or make it fun or anything. I try. I really do. But I am so tired by ten o’clock in morning. And all I can think of is my exhaustion. I think about being at home with Lola and Ciro and Zoe. I want to check my pupils. I can’t talk this much. I need to go home. I cannot put myself aside and do for the kids. A year ago, I didn’t think of me. I was young and strong. At work, I could put aside anything and dive full-force into a day taking care of the needs and wants and impulses of 25 six year olds. Now, I am old and weak and my head has no room for them. All that is in my head now is me. And I don’t fit inside my head, my house, the class, the school or anywhere at all. I don’t fit. But THEY tell me I do.

January 2017

Happy New Year? Not quite yet… I had the weirdest moment, the strangest thought came into my mind. Stress and uncertainty and sickness and doubt are rampant in me right now. And the bizarre thought that came was a longing for the neuro unit at my hospital back in April 2003. I could see and feel the neuro floor, my room. I could see the blue chair in the corner, my stuffed dog cuddled on the bed, plants on the window sill. I could smell the food carts and trays that never had my name, with my broken swallow, the cleaner they used in the bathroom, the vanilla scented hand lotion a friend brought me. I could hear the nurses, shifting papers and fluffing pillows, securing chairs and readying needles and drips and lifesaving bags of food for me. Even the lighting, I remember and it was with fondness and security. For a moment, I breathed easier thinking back to my hospital. I was at my most vulnerable then surely, sort of. But I guess I was also super safe and protected. I had no choices to make, just good directions to follow. And any misstep I made was immediately redirected. If I fell, I was caught. I guess it was simple there, in a way. For a few moments I was comforted by this memory. And then I was horrified. I was back there, in my mind. Fear was running the show. I was flooded with it. I had lost my zest for life. I was whirling in hate and anxiety. I, I, I… crud. Yikes. Ick. The dikes were broken and I knew it. At least I knew it right away. I didn’t know any better then. I do know better now. It’s a big and clear RED flag sign to romanticize my time in the hospital in April of 2003. In no way, shape or form do I ever want to return there. I have learned from it, absolutely. I have accepted it, yes. I have gone beyond it and moved forward, maybe not as much as I thought.  I hope and pray I pay attention, soon.

        But life is so busy and I am easily distracted from myself. Christmas is gloriously alive through Twelfth Night and indeed surrounds us at home until February. The decorations, their energy help me smile in the bleak midwinter. They always have. For the past eight years there has been a new focus for January. Jason’s birthday is such a great thing to focus on and celebrate. I can lose myself in celebrating him. (Don’t get me wrong. It is fabulous and blessed to honor him. His day is important. But it is not fabulous to lose myself in, behind and under that celebration. That practice is not fair and dishonest to Jason, Tim and me. I cannot hide from myself. I have to face my fears. I know I am happy when I do. But not so much this January…) the questions, tasks, and items on the To-Do list are countless and exhausting, if I go that way. And I did this year. I did not bite off a sane and manageable chunk. I went hog wild into infinity. The cuckoobird in my mind ran something like this:

What will Jason’s birthday cake be? Do I have the right colored gel to make the frosting all the proper colors? Where will we store the cake? Will the back hall be cold enough to do the job, because I KNOW I won’t have enough room in the fridge for the finished creation? What Christmas decorations come down to make room for what Birthday decorations will we put up? Will he have a kid party? Where? Who does he want to invite? What gifts are high priorities for him? What about the weather? Will bad weather spoil the party? What should I put in the goodie bags for the kids who come to the party? What if the items I want are on back-order? What other options for goodies or gifts can I generate? When do I clean the house? Do I clean the house? What supper will we have at home that night with the family? What about a birthday breakfast? We’ve never done that. That will be cool. What else do I need to get at the supermarket for that? Do I need to make anything the night before? What time will I get up on his birthday to start breakfast and supper cuz we are gone for the party for a chunk of the day? When will we have birthday with Wessyfoo? How much is a reasonable amount to spend on all this and how much is obscene? Am I getting a cold? Is Jason on track for everything an 8 year old should be doing? And on and on and on…

        Jason picked Harry Potter as the theme. He and Tim are reading the final book of the series at bedtime, have seen all the films and we redid his room last summer along the same theme. I found his cake idea on Pinterest. It is a book of spells cake. The big book is opened with the pages furled and birthdays spell written on the pages. I got more black gel along with fresh maroon and a deep yellow color for H.P. After school, I made two 13 by 9 inch vanilla cake layers and a vat of Sugarhouse Buttercream Frosting one day. The next day I set the two layers together and froze em so I could shape and carve the rectangle into the book. I curved the tops and edges like a big fat open book. The crumbs I mounded up with extra frosting for a sweet wad of cake indulgence. Jason and Tim snarfed the lot. After that got cold, I spread ample amounts of frosting, used a big fork dipped in edible brown dust to make the look of page edges. I made a maroon and yellow scarf draped across the top of the book. I did my best on the writing, but my hand strength is crap this month. Oh well. It came out large and proud. V. Impressive. And we can’t even bring the cake to his party.   They don’t allow “pastries.” So the cake was only for family dinner. The back hall was cold enough to house the cake, thanks be. I dug in the drawers and found the two Happy Birthday banners for the living and dining room. TRADITION! I put away the Santa and Snowmen collection and made room for birthday fixings. Jason definitely wanted a party and so we booked the bowling alley again. Colonial Bowl is a classic candlepin vintage bowling alley. It is a Worcester Gem. The kids can be loud and lively inside which is important for a winter kid’s birthday party. I’d love to have it in Wessyfoo, but realistically not happening. Jason picked 10 friends to invite. Jason’s Pizza would deliver lunch just like last year. But this year we went psycho overbuying pizza. I think we brought home 4 large pizzas. Yummy. And it added to my Christmas Poundage which should be on the decrease not increase by this time. No cake at the alley! Jason and I made goodie bags along the Harry Potter theme with no food or candy included. Enough candy has whirled this season. We found a set of magical antique keys and flasks with blank parchment on which our young magicians could pen their own spells. Jason put each child’s name on a brown lunch bag. I cut slits in the top and wove maroon and yellow yard to close the goodies into individual sacks. His handwriting is so much neater than mine. Jason wanted his own authentic wand for his birthday and I found, bought and wrapped just the right one up early.

I made a full(ish) English breakfast for the birthday lad. Fried eggs, bacon, sausage, mini croissant donuts that he picked out (aren’t English but he wanted em), toast and juice rounded out the table. We three all devoured a mountain of breakus. At the party, the kids bowled two strings. The team of girls had the highest score for the day, if you’re interested. I was. Jason had a strike and that was great. Small and tall were all smiles and pizza filled tummies that day. Jenny and Richard were going to come to the party and back to the house for cake afterwards. A wonderful idea: cake after the party at around 1:30pm and then MORE cake after supper. A grand idea, as yet untried. But a gas leak kept them home in Wessyfoo. We missed them but enjoyed the cake twice that day. 4 of the kids from the party were hanging at one house after the party. We drove by with 1/3 of the cake to feed the masses there after we had done damage to it after the party. It was well appreciated by them and not missed by us. It was a big huge cake.   I had made a Basilisk Calzone for supper. Basilisks are snake-like characters in Harry Potter. I made a very long roll of red sauce, cheese, ricotta and pepperoni. I curled it into a snake shape, used two olives for eyes, cut a pepperoni slice into a snake tongue and mixed green food coloring into the egg wash for the top of the calzone. Wonderful in a gruesome sort of way to look at and delicious to eat for family birthday dinner. More cake followed the basilisk. Of course. Jason opened presents twice that day and was delighted by all. We went to Wessyfoo the following weekend and celebrated again. I couldn’t believe that we got everything done and it was all a success. Of course it would all work out. I hadn’t improved things by being a psycho worry wart. I did get a cold. And I did get another cold. And I missed some of the wonderful kid watching at the birthday party. That is my favorite, watching our son (a miracle) play and laugh and move with his friends. And this year I missed that. My body was in the seat keeping score of the bowling, but my mind was whirling and cuckoo. I saw him and yet I didn’t watch him. My choice. My loss. It was a wonderful birthday, absolutely. And yet I know I wasn’t truly present for the moments of the month along the way. Fear was blowing out the dikes of courage. I know better. I must do better.

     Drama and the negative whirling continued. The month of January ended with more dramatic days for my dear Ciro. His eye “trauma” from Christmas seemed mended with the drops. He was back to himself, the himself of recent: skinny but snuggly, constantly craving food but never putting on weight, patient with Gus and feisty with Rondo. He was resuming his role as King of the Castle. He was. And then he wasn’t. On the last day of January I noticed his eyes, pupils always as big as saucers. I didn’t see the cat’s shape at all. They may have been that way for a few days; I wasn’t looking for a problem.   I was just enjoying my sweet angel. Ciro has been my familiar and confidant for many years. I knew he was with me and yet I wasn’t totally seeing what was going on with him. And he was bumping into things. I think he had been kind of clumsy for a couple days, but it hadn’t registered in my head or heart. Clumsy is how I bash through life, moving too fast. And then I saw him knocking his head onto door jams, edges of chairs or tables. He missed a leap and I just sloughed it off. But January 31st I stood still and watched him. He was walking from the hall, through the bedroom on route to the study and his comfy blue throne armchair. Gus was standing in his path. Gus stood still. I stood still. Ciro walked into Gus. Ouch. It hurt my heart to see it, but I think I giggled a bit out loud. Nervous giggle I hope. Neither Ciro nor Gus took offense. Neither reacted with hiss or swat or claws. For that I am grateful. I went to Tim and I said the words out loud before I could swallow them. I wanted to swallow them. I didn’t want to tell. I wasn’t ready for it to be real. But my feet walked me into the living room. And my mouth opened and out came the truth, “I think Ciro is blind.” I said too matter-of-factly for the way I felt.   I told Tim what I had seen and kept talking until all of the pieces came out and made a clear picture. I had to call the vet. I googled sudden blindness in cats and the leading cause seems to be explosive blood pressure that could blow out the retinas. It didn’t look good for his sight or future. I read that sometimes if they get the blood pressure under control soon enough the cat can sometimes get some vision back. Crap. Even though we had decided in January that we weren’t going to do any more drastic measures, I called the vet. I had to. It was Ciro and he deserved this. I was surprised that they didn’t squeeze him in for an emergency visit. But they didn’t. And when they didn’t tell me to take him to the big hospital at Tufts, I breathed. Ciro was either going to make it til the appointment or not. It wasn’t my call. I was doing the right thing and going give him all the love I had while he was here. So Ciro had to be seen and I had to be at school. Tim would take him. When we made that appointment I knew I had changed. Tim would take Ciro to the vet alone. That’s when I knew. Ciro was our cat, not just mine. Ciro was loved by more than just me. Tim would make the decisions at the vet. He would ask the questions. He would hold Ciro. And that was the right thing. Somehow, over 9 years, without my looking, Ciro had become his cat too. Somehow, I had opened my heart to share Ciro with Tim and Jason. Somehow, against my better judgment or practice, I was beginning to share our family with our family. Tim could take Ciro to the vet on February 2nd and I could go to work. It was so simple, comforting and yet terrifying. I knew that I had to let go of Ciro someday. I know that day is coming. I just never knew that I could let go of the unilateral solitary control over Ciro and other things in my life and be caught and cradled by Tim and our Family. Everything and everyone would be ok. We’d be better than ok, because we truly had each other to cherish and support and appreciate and celebrate. We weren’t in it alone. I wasn’t in it alone. Things were happening that I could never do or would no longer want to do alone. And I didn’t have to be alone. We are a strong and mighty wee family. They got my back, and life is better when I let them. I didn’t know I could do that. But I did. I have. I’m blessed. (Prayers up for Ciro. All my heart is where it should be, on him. I am seeing clearer now, at least about this one very important thing.)

countless. The lessons I learned then are those I need again now in January 2017. Here is the presentation I gave that day. I needed it then and now.Welcome to the School of Stroke.

The theme of the conference is “Happy Days after Stroke” celebrating success. So as an 18 year elementary school veteran teacher and 11 year stroke survivor I am gonna teach a crash course in Happy! (The school of Stroke is not a virtual or online program. You can only succeed if you have experience. I know all here today qualify!) I am a stroke survivor: By definition, survivor equals success. We rock!

I have a lot of help at the School of Stroke. These are the student teachers at School of Stroke and they are a big Part of my HAPPY DAYS AFTER STROKE. Point out Jason in the middle in the aqua hoodie!

The Big Idea of school, I hope, is to help students lead happy and productive lives. When I heard the theme of today’s conference, I brought the theme song to the TV show, Happy Days, to my new millennium sixth graders. They are interested in all things stroke and are advocates in their own right! Robert, standing behind Jason in the photo, listened to that song quietly.   When it was over, “NO NO NO” was his reaction. “If you are gonna share about Happy Days after stroke Miss, you need the song HAPPY by Pharrell.” He found the song on my Smart phone of course. Here are the lyrics.


It might seem crazy what I’m ’bout to say Sunshine she’s here, you can take a break I’m a hot air balloon that could go to space With the air, like I don’t care, baby, by the way CHORUS

(Because I’m happy) Clap along if you feel like a room without a roof (Because I’m happy) Clap along if you feel like happiness is the truth (Because I’m happy) Clap along if you know what happiness is to you (Because I’m happy) Clap along if you feel like that’s what you wanna do Here come bad news, talking this and that (Yeah!) Well, give me all you got, don’t hold it back (Yeah!) Well, I should probably warn ya, I’ll be just fine (Yeah!) No offense to you, don’t waste your time, here’s why… Bring me down Can’t nothing bring me down My level’s too high to bring me down Can’t nothing bring me down, I said…                            


The song says “Clap along with me if Happiness is the truth!” IT is!

Robert is dead right! It rocks! 6th graders are at that wonderful and horrible age, where they are truly exploring their own passions. They know what they like and will pursue what makes them happy, fiercely. (I do wish that their academics were more often the center of their pursuits, but oh well.)

I asked Robert, Ahkeel, Dominic, Bill, Yeimy, Ohemaa, Alecia and Meghan; “What makes you happy?”

In my mind, as I had observed them all year, I had my ideas about the answers.   Some kids knew right away what made them Happy: “DANCING!” Ahkeel knows.

Other kids did not know, but when I said what I thought was their passion, when I saw that they were HAPPY….they agreed.

I have singers, dancers, artists, basketball and soccer players and loving friends in my class. I asked my kids to just show their Happiness and let me video! We went to the gym at school and they sang, danced, showed their art, played basketball and soccer and above all else, took turns celebrating each other. All this was done with the song, “HAPPY” playing.

Show clip #1 of HAPPY

Every muscle movement and facial expression shows me that the kids are happy. Happy in that moment. Feeling successful. Feeling confident. Feeling worthy. Feeling Alive! Being human. They have found happiness. Believe me, I know these kids. They are my heroes. They are children facing serious adult problems, victims of their circumstances and survivors in the face of it! I watch them every day, and see them roll with the punches and find their joy.

“Clap along with me if you know what makes you happy?” Is what the song says?

Aye, there’s the rub for stroke survivors! Our Happy Days are quite a different kettle of fish.

I have shared openly with the kids, my story of Stroke. It is an 11 year old story now. It is constantly under revision and ever changing. I told the kids that I see Happiness when they are doing the activities you saw. I told them that what makes me happy today, post stroke, is very different from most things that made me happy before stroke. What I can do has changed. How I learn is different. I am not the same person. I told the kids that now I believe that Happiness is something that I choose to learn, practice, be and share…every day.

There was a lonnnnnnnnnnng silence after I said that. (A totally treasured moment in my class, I might add.) I said, “Bill, you love playing basketball. What if one day you could no longer run? Or if suddenly your right hand, that you dribble all day with, was a claw hand from spasticity? What then?” He was horrified. But he looked at me and said “What next? What would we do? What could I do?” He trusts and believes that he could find, with the help of the kids and me, a new happiness. Awesome! (He is also young enough to believe he is gonna live forever in the primo body of a 12 year old. But still…) the kids know a lot about me. They know why I am here with you today and not with them. My students know that

Stroke changed my life.

As a child stroke made me laugh when I watched Sophia on the “Golden Girls.”

It made me nervous and sad when it struck my Gramma Jean and put her in the hospital and made her move slower, talk different and speak things that should have been edited out…….. You know what I am saying. NO filter. Stroke made me uncomfortable.

At age 30 Stroke changed ME. I was having headaches that I thought would split me in two! But I was not really alarmed. I walked around school with ice packs on my neck, popping Tylenol to ease the pain. No one was severely worried. I went to my doctor for a regular check on my thyroid. And right there in her office, April 4th 2003 stroke got me.   I got hot. I slumped. I slurred. I couldn’t swallow. I was in the ambulance. I was in the ER. I was choosing TPA or not. I was in the ICU. I thought the beeps that night were for me…dying.

Stroke made no sense.

Stroke took my life and crushed it.

It took my emotions and numbed them.

It took my body and silenced it. It took my rage and fueled it.

I sat in that rage for a very long time. Happiness was NOT the truth then. Fear reigned. I lived a couple of years in that hole, trying to die. I didn’t obviously and thankfully! Now I know that. For some saving Grace and I mean “Grace,” I had my stroke in my Doctor’s office when I was young and strong and got immediate great care: FAST! Dr. S, Dr. K and all at Med City in Worcester are my Angels. I got better.   I was saved for something. I recover every day.

My stroke was a stroke of luck for me. I learned how to love life. But I got treatment FAST. I found The American Heart and Stroke Associations FAST. I had hope FAST.


Last fall, we buried an angel, our friend Margee. She taught me how to be a mom. She was the expert! I wanted to cancel Halloween one year because Jason wouldn’t wear the shark costume he had begged me for and I had bought. He wouldn’t wear it. So I wanted to cancel Halloween for him. Margee was there and she offered to take him, costume or not. She offered to go up to the houses and get the candy, costume or kid or not. She did for him what I didn’t know how to do. She did for Jason what he couldn’t do until he found his way. She saved me and Halloween. And this was just one lesson I learned from her. Stroke got her alone in February and we let her go in September. My neurologist in Worcester, Dr. Gary K says that folks are not listening. They have stroke warning signs and think if they just get a good night’s sleep, they will be fine in the morning. And by the time they get to him, there is nothing he can do! We are all here, survivors and caregivers. And there is so much we can do and learn!

First – THEORY- Think about it! When did you first feel happy? What made ya happy? Hmmmmmmmmmm. I have a hard time remembering it! As children grow and develop, they innately learn it. And hopefully their family and school and communities cultivate that joy. We saw the kids in the video, happy and pursuing it. In school terms: there is an introduction to a lesson, practice, teaching, more practice and A+: Put a gold star on the forehead! A child tries an activity, the body releases endorphins to the brain, saying “Clap your hands…………….” Someone says “Great job kid, awesome!” And they are off and running. The road leads them organically to other passions and activities from which they derive pleasure……….Happy Days.

But stroke changes all that. Let’s be real here, we know!

Stroke changes all the rules and we are left sitting in the hardest test of our lives, we can’t read the exam, the teacher is talking “Martian,” we don’t understand the directions, what we answer doesn’t make sense, we don’t know why we are even in class, at our age…and our grade is F. Failure. Not Happy Days!

I sat in that class for a couple years after my stroke. In the anger at how I had lost control and how I had changed. I cowered in the corner of class, locked in fear….Hopeless.

In School of Stroke terms: The stroke pretest for me looked like this: Cooking and eating was always a big thing with me. I adored all parts of the food prep and consumption, every day with all in my life! As a child, I was not, repeat not, athletic. In second grade I started working with clay and I loved it! I pounded, sculpted and molded the clay all the way through college. And I got good! I remember feeling happiness, when I worked with clay. In high school I took Chorus…and I got good at singing. I was happy when I sang. I cooked with my family. I enjoyed the outdoors: gardening and walking, the beach sunning and swimming! I remember how much I loved to read long novels. Fiction and mysteries. Thousands of pages. I got into crossword puzzles and felt immense pride when I conquered the whole page of little, numbered black and white boxes. I really enjoyed household projects, like painting. Even ceilings were fun to paint! I liked to drive out for day trips around New England, from Cape Cod to the Berkshires. I loved going to England to spend the summer with my Dad. I could talk all day at work with kids and all night with friends and I liked it! Can you see in your minds a few things you did as a child and smile?

But…Hmmmmmmmmmmmm- post stroke!

The immediate posttest after stroke had big time FAILING marks! First- The eating thing. Well I lost my swallow totally for 9 weeks after my stroke. Not being able to do this basic function took my humanity. I didn’t know a Rachel who didn’t eat. Then, I had loved clay. For a long time post stroke I had such little strength and endurance. Clay was out then. The clay had come into my life when I figured what a klutz I was and helped me find grace. But, post stroke? Well let’s just say my body was highly uncooperative. I remember PT at about 3 months out. The trainer told me to skip! I could see myself doing it, but I my body had totally blacked out that skill. After several lessons I did get it back. I had to relearn it. It seemed a stupid thing to practice. But practice at skill and being teachable is never a waste. I know that now.

Moving on to Singing: you don’t want me to sing. My pitch is in a totally different register and the muscle weakness makes my rate too slow. I sound like a 45 record played at 33 speed. The great outdoors I loved, early unsteadiness inhibited me and then I gave up. Fear of stroking out again kept me close to home and not real lively, so the travel outside the county didn’t happen! (I needed the security of my docs and hospital nearby to combat the fear!) Swimming: kind of forgot how to hold my breath under water and have my body do something at the same time. My brain didn’t really multitask.)

Books: words were tough to concentrate on. And when I could, my attention span didn’t warrant a novel!

Crossword puzzles: Same issue as books.

Household projects: refer to the section on fear of stroke reoccurrence.

Travel: refer to the section on fear of being away from my doctors and hospital.

My world got very small, very sad, very lonely….very fast.

  1. Now I am thoroughly depressed.

In school, we do a pretest (see what kids already know), teach, kids practice and then we do a posttest (see what the kids learned.) And then we open a new bag of tricks and do a big RETEACH. What we want the kids to learn stays the same, the content. But we gotta find totally different modes of showing it kids. We gotta practice another way. We have to make it matter and connect to the kids so they WANT to try again, even when they have absolutely given up. We start over, again and again. That is my journey at the SCHOOL OF STROKE. Every day. There is no graduation from this school! I have to take each day mercifully and gratefully, a 24 hour block and set a goal of Happiness for that one day!

The content of THE SCHOOL is HAPPINESS! Pharrell is right, “Happiness is the truth.”   That is why we are here! That is the joy of being alive! Right? But, the pretest (prestroke) and the Posttest (post stroke) Results DO NOT MATCH UP! We have to go back and be RETAUGHT, RELEARN AND DISCOVER ANEW what makes us happy! It is a tabula rasa! We are very lucky really. We must reinvent ourselves, really play and discover as CHILDREN DO!

Here are some things RACHEL DO, now:

  1. I love to crochet and knit…now!

I go whole hog and enter my crochet at the Spencer Fair!

Yes, I am competitive crocheter!   That, and baking is my event too)

I had use of my hands post stroke. (I have no feeling of heat or cold or pain on the right side of my body. That has a lot of annoying and inconvenient daily ramifications. But I am learning because in the beginning the ramifications were painful and dangerous. (Reaching for hot pans on the stove with a hand that can’t feel heat is not gonna work out well.) But I am learning and I have dexterity and mobility on my side, especially after coffee.

My dear friend Donna told me that scientific research said that crocheting the GRANNY Square stitch, the repetition of it, did some rewiring in the brain. I didn’t buy that, but Donna always had new blankets and things that looked cuddly to me and made people smile when she gave them away. I didn’t have to talk while I did it, which can be physically draining, and sometimes it is still scary to talk to people. Fear! Anywho- I was desperate. So I let her teach me and practiced and had success. The loneliness was eased because of working with Donna. And when I gave stuff away, they were happy with a gift. And their smile made me Happy! I think I had gotten pretty unteachable as an adult prestroke. That gift of teachability from the stroke is huge for me. (Donna did have rules if she was gonna be my teacher. I could only crochet. No knitting. Crochet has one rounded end stick to use. Knitting has two sharp long weapons. I was still angry and unreliable and Donna was not gonna risk injury if I got cranky! Now she says I can knit. Donna makes me laugh and that is key!

HUMOR kicks Fear out!

Why not?





I also got into tattoos! I had a feeding tube for a couple of months. The scar was always there as an injury, marking a broken and damage part of me. Until,

I figure if I ever need another feeding tube, the docs will know right where to put it.

Last year I needed another tattoo. Pain does not deter me. Tattoos are not really painful for me. I have the guy start on my right side where I don’t sense pain and then we he gets to the left side I am already numbed out…..excellent.   Stroke advantages.

I get fear in my neck, over my brainstem where I had my stroke. I wanted a heart tattoo for the AHA. But instead, I went for a gardening personal motif.

A bleeding heart over the spot that I bled out. I try not to get anymore…but we will see!

You see Laughing and being happy, trumps, trounces and pummels FEAR out every day. Just for the day!

So IN RETEACH at SCHOOL OF STROKE-, I retrained my brain if you believe the research; I took a chance and tried. I let myself be taught and led. I trusted. (Seriously, I had nothing to lose! There was no real quality of relationship with myself or my loved ones.) I practiced at the stitches and skills with new dedication. And I didn’t work is isolation. I had HELP FROM HUMAN BEANS. I chatted at the yarn store with any and every one. I bring my crochet to social and work events. (I no longer care if anyone thinks I am goofy for doing this. I am a survivor. I rock. And whatever helps me be HAPPPPPPPPPPPPY…) I give away the things I make and now that makes me happy! My world grows with loving people every day. Like today. I am learning so much. I have to stay in a place of HUMILITY, OR MAYBE JUST ALLOW MYSELF TO SEE MY HUMANITY. Every day, I see regular people in misery. They are healthy and “whole” and miserable and seem to want to share that. I can see how blessed I am to find joy, to be happy in the little things of my daily life. Daily life is a blessing. And I don’t know what else is around the corner for me. But I do know, I DID NOT SURVIVE A STROKE TO BE MISERABLE. Been there, so done that.

I am learning everyday things that I can do. I can help other survivors and I can help others appreciate what survivors go through and need. And now, because I can do it, I am driven to!

This pic became our Christmas card.

Once I got doing a bit with people, it grew, I grew! I became more human. It is no accident to me that I got married and had my son after stroke. I needed that lesson to be teachable. I needed to learn how to accept help, share, and take turns to be a wife and mom. I guess that when I had learned them, the greatest man and son got written into my daily lesson plans. I am beyond blessed.

Here is a quiz on what we have seen so far:

I made a friend at Stroke Lobby Day in Boston a few months ago. She is a double stroke and aneurysm survivor. Prestroke she was a high powered business executive. One hobby pre stroke for her was embroidery. The other was kick boxing!


Post stroke: She is retired. Short term memory has trouble. Fatigue is big time. Large groups of people and lots of noise are disturbing to her. She does not drive due to loss of peripheral vision. What did This Stroke Superhero do to have a happy hobby?

  1. Give up both hobbies!
  2. Embroider only. Stroke survivors don’t kick box.
  3. Take up Cruell embroidery and kick box in her basement gym.

C is correct. The narrow field of cruell embroidery is perfect for her new field of vision. The home kickboxing makes it safe for her and is not spatial or noise overload.

Now the wrap-up: What I have learned so far at the School of Stroke, what my kids seem to be learning and what I learn leads to a daily short list! Any Happy Post STROKE day has to have 3 components:

  1. Humor
  2. Help from Human beans
  3. Humility


  • I absolutely have to laugh and smile
  • I need help from others and God every day. I need proof that I am not alone.
  • I need my peeps. I need to learn from them every day. And I need to help them.
  • I need to focus only on what I can do today, what I did well today and who I helped today. Nothing else is my business.

Did 5/3/14 have all three components!? You betcha. Human Beans- check. This past Saturday, Tim, Jason and I did the Central Mass Heart Walk. It is something I look forward to every year. Allyson was there and I know I am helping her. I was seeing other members of the advocacy group, moving the body and smiling. HUMOR. We told jokes and laughed. HUMILITY: was getting my white stroke survivor hat and not seeing any others on the field. I saw red hats for all other forms of heart disease survivor and NOT a single other white hat all day. I was humbled to be the only stroke survivor walking that day. And I was saddened. I felt lonely. But I see you here today. And I know I am not alone. The Heart Walk is definitely a day where I got all 3 of my daily subjects.

Now my student teachers and I had an idea of what the video would look like to show HAPPY. My son had danced at home and the kids had danced at school. We had planned. We ran through it like we planned. And there is happiness in our video. But Jason did not dance in the video like he had planned. And there is always more that happens than what we planned. I picked up the camera afterwards when the kids were just playing. The video was made and we just played in the gym together, proud and exhausted. I want to show you that real life happy! Post plan fun rocks! Show final Happy clip

So I ask, what do I want you to leave today with?

We need to realize that STROKE SURVIVOR= Success! Period!

The pledge of School of Stroke could easily be…. I survived and I know “HAPPINESS IS THE TRUTH.” And we have a unique opportunity that I believe is a blessing. We get to choose our lives, our happiness with the wisdom of experience.   We saw the student teachers be happy in the video; you knew when they were happy! Can you catch yourself smiling today and recognize what you were smiling about/at? Whatever it is, is a seed for a Happy Day! Like it or not, we are different. And we are different every day. We can always try something different and better and happier.

We have choices. And I don’t know about you, but I have had enough decisions made for me in this journey. We need to make Happy Choices! The joy of living today is full of Humor, Help and Human Beans and Humility. What happens after things change, and they always do? What happens after the video is done? What happens after we do what we planned?

You need to know that today each of you made me smile and laugh! You helped me not be alone. You made me feel like I matter. You made me proud to be a stroke survivor. You filled my School day for 5/7/14. As we leave the School of Stroke today, I have Homework for all of us: Pay attention to what happens after THE PLAN is over! Notice 3 times you smile every day. Clap when you feel happy. And follow the smile. Do what makes you happy! And then repeat tomorrow!

Happiness is the truth!   Thank you!








December 2003 & 2016

Advent Hot Chocolatetawk topic for the month:

“Stay afraid, but do it anyway. What’s important is the action. You don’t have to wait to be confident. Just do it and eventually the confidence will follow.” For Carrie Fisher’s life, legacy and these words, we are grateful. Discuss…

In this season of short days and long nights, big presents and big bills, biting cold and spectacular snow crystals, smiling lucky kids and sobbing broken hearts, special births and crushing deaths, we look for miracles. Life and our world seems at its most extreme during Advent. The blessings and disasters both require more from us. They require more than anyone could possibly provide. We turn to each other. And we turn more readily to the miraculous for help. Perhaps we do it out of impulsive desperation. We have no answers left. There is room the unexpected, for miracles. And sometimes in Advent, we get miracles. I have.

We need hope. We need hope that change for the better is possible and probable. We need hope that on the other side of the fear which cripples us is the faith which sustains us. We need hope to even try to move beyond what scares us. We need hope to help us move at all, in the cold, dark disappointing winter. We hope and pray that the sun will come back and warm our bones, our hearts and refuel our spirits. We pray for spring. But first there is winter and all of its’ challenges. It is harsh, but not without hope. Advent is full of hope. I believe. I believe there have been more gifts and miracles and hope at this time of year. Maybe we want it, need it and therefore make it so. Who knows? I don’t consider the philosophical angle much. I still believe in Santa Claus. Seriously, I love Santa and swear by him. Try to dissuade me… You’re preaching to the choir right now about Santa.

Enough of the waxing rhapsodic. The contrast of the season is evident to all. What I need are specifics. I believe in miracles and I have hope. I do. And I have been taught that I can help along a miracle and develop hope in my life. So I do. A dear friend, a stroke survivor like me, teaches me many great lessons. Here is one. “Whenever I remove something bad from my life, I have to replace it with something good.” She cannot leave a void for long. The vacant hole would too easily summon negative enterprises. Balance is what she seeks. Positive action is the solution.

I like this. Maybe in the past, before my stroke, as a youth I could talk endlessly about my great ideas. Perhaps then I could exist on that plane of ideals that may or may not be realized, but provided endless fodder for discussion and dreams.   I dreamt big. I admit it. And I sought continuously the high-highs of these larger-than-life dreams. In my mind, I could build a wonderful life, straight out of a Hollywood script. It was unencumbered by reality.   I never lived those dreams. But boy, I waited for them. Lonely, without ability to make any dream a reality, I waited. And waited.

Since my stroke, I can’t wait for dreams, life, miracles or hope to come to me. I’m not promised a long life. I want to enjoy every moment of the incredible life I have today. I have to act now, making space and moving through life. I gotta be a part of my own life, for goodness sake. In that way, I am my actions. Or rather, the steps I take each day are what I call a life. I DO things and some succeed and some fail. When I am happy with the results, I consciously choose to do more of it. When I fail, or my actions don’t seem to help, I stop doing that action. I take time to think of what I will do next time that will yield better results. That’s how I am. I realize that now. That is how I roll today.

That is VERY different from who I was before my stroke. I have changed, because of my stroke. And I continue to change thanks to my stroke to get the best life for me. I think I change a lot. Maybe I have changed a lot more than/ faster than my peeps. I live in my bubble as we all do and being a stroke survivor is my “normal.” I forget sometimes how different I am. I think that some of the difficulties I’ve been having lately might be stemming from this. My “normal” is not a normal that any of my peeps are familiar with. And that which we are not familiar with, we can have a hard time dealing with. It’s kind of like I am always from a different planet than my peeps. I realize that my stroke is playing a part in my life, everyday, even after all these years. I forget sometimes. But now I need to pay attention. Hmm.

Focus Rachel. I was thinking about the idea of change! I know change is basically undesirable to me. I don’t think I am alone in that. I am afraid of change because I can’t control the outcome. I make room for changes in life because I’ve had to. I wonder if my changes are hard for people in my life to handle? I wonder if it makes them uncomfortable, even after almost 14 years since my biggest shocking change. I wonder.

Afraid or not, ready or not, I act. That can be hard to handle for me and people in my life. I don’t have the luxury of the illusion that life will eventually work out according to my plan. I have the blessing of knowing there is a beautiful plan for my life and all I have to do is show up and live life on life’s terms. What a Christmas gift that is!

My life and who I am could be described as my responses and reactions to what is presented to me. The relationships which sustain me are formed in those “moves.” Life makes a move. Rachel responds. Life makes a move, throws me a curve. I react. Life gives me its best and I respond with my best. And on and on it goes. I am blessed with each day that I can play!

Having a stroke was certainly not part of my life plan. Stroke’s no game and it doesn’t play.   Stroke caught me way off guard and changed everything. (Thank God) I had never wanted to change anything unless I was confident that the result would be exactly as I wished. I thought that my “well thought out plan of life,” would unroll and it would naturally evolve. I was living in response to the thoughts in my head and the life I imagined. I was not in relationship with myself, reality or the wonders of this life. I couldn’t. I was too afraid. I was afraid of not having control. I was afraid of the unknown. I was afraid of everything. I had no tools to deal with stroke. I couldn’t think my way out of it. My thoughts didn’t change the reality. But my actions sure did.

And actions bring me back to the quote by Carrie Fisher. For each part of her quote and for every peak and valley of Advent, I have a connection. These connections are what Advent is made of, for me. Here they are: (Yup, I love lists)

  1. “Stay afraid. But do it anyway.” The American Heart and Stroke Association posted this quote of Carrie Fisher’s the day after she died of a heart attack at Christmas. I had long admired her work, life and family. Growing up with Star Wars, I revered Princess Leia as the ultimate “cool girl.” I loved her in When Harry Met Sally as the endearing BFF. Fisher’s openness about her human struggles with addiction, mental illness and family helped and taught me that there were other folks living in a messy world, just like me. Not everyone’s life was Barbie and Ken at the Club, pinkies up as I hold my teacup. Carrie’s mom, Debbie Reynolds was a funny familial force and their very public mother-daughter relationship was refreshing. It was the real deal, not a Hollywood golden trophy family. Their family was a living, fire-breathing, passionate clan, like mine. Theirs was a family loving loudly and fiercely, like mine. I loved when Debbie Reynolds had a spot on The Golden Girls and when she played the mom on Will and Grace. She made me laugh when I thought my laugh was broken. For her to die so soon after her daughter, actually when she was planning Carrie’s funeral, from a stroke, stopped me in my tracks. Heart disease struck them as it had me. A family unexpectedly ripped apart in this world and perhaps reunited in the next. A child went before a parent and the parent followed, and all during Christmas.

Carrie’s words in the wake of her death, “Stay afraid” were brutal. When I first heard them, I flinched! Stay afraid! Are you kidding me? I’ve been on a path which teaches me to walk through fear, turn over my fears to God and become less fearful as I develop greater faith. What did she mean? Why would the AHA/ASA quote it? Why was it so unsettling to me? As I read on, I understood. “Do it anyway.” A-ha, a light bulb moment for me… I get it. Fear is for most, a part of the human condition. We all have it at some point in our lives. But we take action and keep living even though we are afraid. Fear does not prohibit action, nor is it an excuse to stop fully living.   Carrie, in her simple words, acknowledged something all of us can identify with. She validated our fears. And in the same breath, told us life goes on and we can be a part of it. I love that. Comfort and Challenge! (That could be a modern carol title, a spin-off of Comfort and Joy. It could work.)

  1. What’s important is the action.”   That’s the key for me. I thought my brain and life was over, shot to hell by my stroke. Literally and medically, I feared that the brain cells lost or damage made me deficient, deformed, disabled and better off dead. I felt ugly and useless for years while I nursed that belief. And because I had always been a fearful person and now was scared shi**ess to my core every second of every day, action was an insurmountable feat. There was no way I could do, anything beyond what my doctors and therapists told me to do. I didn’t know what the right thing to do was because I had no plan for myself to anchor me. I couldn’t control outcomes, so assuming the absolute worst would ensue, I did nothing. I couldn’t do what I wanted because I had no idea what I wanted anymore. In a world where God and my own body had so definitively betrayed me, there was nothing I could do. I was frozen in fear, paralyzed by the life lessons stroke was teaching me. For some reason, I don’t know why and I don’t care, I was given a gift of starting over and making a new life, just for today.

I have learned that action rewires my brain. My understanding, of practically everything comes after the action. My body heals through exercise and movement.   My spirit is filled and inspired by the life I am a part of. The perfect example is my swallow. I took it for granted. I took youth and health and mobility and independence and a simple sip of water for granted. I had no appreciation of how much the simple swallow mattered. I had no idea that just being human was magnificent. I didn’t get that by myself, just being me I had the greatest gift ever. When I lost my swallow, when my stroke took it, I learned. I learned who was running the show. Not me! I learned how intricate the physical mechanism of the swallow is and how amazing a process it is. Working so hard for something so simple was the lesson I needed to learn to live my life right. It was in the action of the work and it is in the action of that sip of coffee, water, or seltzer that I learn. I appreciate it everyday. Swallowing makes me smile everyday. It is that simple for me. (Going a couple months without it, made me celebrate the days with it.) I don’t have to understand why. I don’t even ask why much anymore. I get busy doing the action and later I know a gift will be revealed to me. It always is.

  1. “You don’t have to wait to be confident. Just do it and eventually the confidence will follow.” I hear ‘dat! If I waited for that, I might never move. Again, the understanding comes after the action for me, and so does confidence. I try a new recipe for a special meal. And if it goes well I get confident, down right cocky about my culinary prowess. If it goes bad, another recipe always comes along that tempts me to try again. I fake it ’til I make it, as I’ve been taught. Folks that I watch as models of good living, try all kinds of things. They make it look easy to do things so great. So I pretend I am them. I channel their expertise, if you please. Why not? It’s like acting. I pretend I am Julia Child in the kitchen. I’m not, but I have fun. And as she said, parsley or whipped cream can cover a multitude of sins. I like that.

Another thing on this topic, just like Julia Child earned, age gives you great gifts. By right and life, the older you get the more experience you have. You’ve done and seen things that the desperate young, whipper snappers can only dream of. Your fear lessens and confidence increases, if you’re doing it right. I am. Life doesn’t shock you so much. As I get older, I am proud of and confident in my journey. I know what I know. I know that I don’t know much. I know that every day I can learn and do and share. By getting to a certain age, quitting the highlighting of my hair and wearing my grays with pride, I get to be a woman of dignity. I get to be someone that others can look to and count on, just like I looked to my Grammas. I get to be a trusted rock for my students and son. I get to.    What a gift.

  1. 4. Short days– It gets dark so early. Usually, sunset is my signal that I can get cozy and mosey towards bed. I am grateful for night’s restful hours. I rise early after sleeping sparsely. My days are full. I am ready for bed early. But near the solstice I would be heading for slumber around four thirty in the afternoon. That’s not really an option.   My answer to the darkness is to bring in a lot of lights. I decorate our house and shed and trees with tons of twinkle lights. Each year I add more. National Lampoon’s Christmas Vacation is the holiday movie I most identify with this year. (Last year it was The Grinch.) I aspire to be Clark Griswold and set my neighborhood power grid on the fritz with the magnitude of my display. Someday…

Each year I add a bit more glowing bling. I started with icicle lights on the front porch and one lite-up reindeer in the front yard. Yup. Things have changed. This year we have three reindeer, icicles on the top and bottom porches, a large snowflake light, lit garland around the front door, a red wagon loaded with wrapped gifts, colored lights on the pear tree, front bush and forsythia bush. There are blue and white lights on the lilac to the side of the drive. Behind lilac, there are red and white lights on the young holly bush. The shed is lit with a rotating white spot light, color morphing snowflakes, twinkling snowflake garland, two grapevine lit stars, a string of big, bright colored lights on the pole at the back of the shed and a lit up arctic fox. Other years the shed has been a miniature gingerbread house, like on our logo. It’s had candy cane markers all around. But this year, the inspiration struck to turn the shed into a sugar-frosted gingerbread house. (Inspiration struck when the candy cane lights wouldn’t light.) It is kind of sparkly, white, sugared, twinkling, frosted pastel candy inspired. I love it. That completes the outside of the house light display. I think.                      With two new trees out front, there is more to do next year. I try to be respectful of my mom and be tasteful about my choices. White lights on Christmas trees, bows on wreaths and candles in the windows are tasteful to her. Beyond that, she thinks it’s a bit much. I have gone way, way beyond that. But I think she likes some of them now. Maybe, I hope so. But I have to practice restraint, or else Tim and Jason know there would be a sleigh, reindeer and Santa atop the shed roof and lights round the rest of the house as well. I love it. I love the lights. I love that kids at Jason’s school, their parents and neighbors say how much they love and look forward to our display. In the bleak midwinter, we shine for them. I love that. Our road is magical for the holidays. I stay awake just to watch the lights. Who wants to go to bed at 4:30 pm and miss the magical winter wonderland that we have created? Not me. In all kinds of winter weather and with every kind of light, they make me smile.   Short days rock.

  1. Long nights – Long cold nights send us indoors for the winter. I personally, like the comparison of bears hibernating in their caves. That’s me. (I also lean towards a likeness to bears with the winter weight I add. Just saying.) We decorate our cave with color and light inside as much as we do the outside, only more so. There are bows and balls and ornaments, stockings, snowmen, Santas, blankets, stuffed animals, from Christmas past and present. Besides the visual decorations, there are all the Christmas movies and music that I adore and crave. I have holiday movies on 24/7 at home. I own it. I have holiday music on 24/7 too. I love it. There are several TV and radio stations that cooperate with my seasonal obsession. WSRS plays the popular holiday songs and is local so I get to hear tunes and stories about my town. They do a food drive at my local supermarket and collect for the Worcester County Food Bank. That’s what the season’s all about. Love that! Then WCHC- The radio station of Holy Cross College does a different set of carols and music without commercials. Love that! There are old favorites and new ones.

I grew up with Handel’s Messiah, so that blasts in my car for the season. Frank Sinatra and Bing Crosby croon the carols fabulously. As a kid, I fell in love with John Denver and the Muppets’ Christmas album; so sweet every year. We used to play that one when we made and decorated our Winnie-the-Pooh Gingerbread cookies. It was our tradition at my mom’s and it was great! I love the carols sung by English Cathedral Choirs as well. My Dad got me into them. The acoustics, magic and mystery of the choirs singing the traditional hymns is heavenly. I love them sung here at church too. Away in a Manger, O’ Little Town of Bethlehem, The Holy and the Ivy, and the Boar’s Head Carol are among my favorites. Jason and I have found versions in these days that we love, new traditions. Youre a Mean One, Mr. Grinch, has been passed from mother to son as a favorite. I am grateful for that. A countryish singer, JT Hodges’ Joy to the World is absolutely brilliant; 2 thumbs up from us. I love that every Christmas season brings new songs, old songs, remakes and reinventions. Once in a while a song comes along that leaves a deeper mark. To me, when that kind of song finds me, I consider it a miracle. It is a special gift that turns out to be just what I needed and never knew. It did not come from me. But, miraculously, I am smart enough and open enough to appreciate it. Nothing I did brought it to me, but I am blessed forever from it. I guess that’s my working definition of “miracle” for this Advent season.

The miracle song for me, and also curiously for Jason and Tim is “A Halleluiah Christmas by Cloverton. I was familiar with Leonard Cohen and the Broken Halleluiah. I loved it. And we lost him at the end of this year too. But his gifts are not lost on us. His contributions, his music is precious. It reaches our hearts. That is the key. I love that his song inspired so many permutations. Great things plant seeds. His song inspired other artists to use his glorious creation as the roots and origins of their own art. My angel teacher friend who helped me get my spot at my new school and made me love going to work in our team every day, she showed me a different Halleluiah. An Irish Priest made his version of the song for a wedding mass. The video shows the wedding, the bride and the groom, and then the priest breaks into song, rewriting Leonard Cohen’s song for his own gift. He sang of the bride and groom and bearing witness to this union. He winked and smiled at the couple, so gentle and genuine. The Irish priest sang of the blessings for the couple from God and their community. My favorite part is when he sings “they say those most important words, I do-ya.” His glory and humility are truly inspiring.

I was coming down the hall at school one cold, dark, winter morning the first time I heard the song. I followed the sound to my friend’s classroom. She was playing it on her computer, humming and smiling along with it. The song had my heart, but seeing my friend smile was the real miracle. I have shared that song hundreds of times since. I try to practice the message of the Irish Priest in my own marriage, enjoying the blessing.

That version of Cohen’s song is an incredibly close second to the A Halleluiah Christmas. I googled the song of course, and found out that Cloverton is a Kansas band. I think the lyrics are one of the 80 odd versions of Hallelujah that Cohen created. I’m not sure.   But the way Cloverton does it is the one for me. The instruments add to the lyrics one by one. The Christmas Story is told and it is always beautiful. One line, I wrote down and posted all year on my fridge. Yup, that’s where all good things go in my house. Speaking about Jesus they sing, “Every breath he drew was Hallelujah.” Imagine, giving glory to God in every inhale and exhale, throughout all that makes up your day. Brilliant. It was a year ago and I was struck by what a tribute to life in that brief line. I put it immediately on my fridge so I would read it every day. To be remembered for living your life in that way, a blessing. I aspire to that. For me to connect with that line in particular, and post it to inspire me daily, that is my miracle. I am grateful.      Sharing the love of the song with Tim and Jason, a treasured gift.

  1. Big presents- I really tried this year to do less Christmas presents. I really did. And I think I succeeded. But wait, there were still too many. I can’t help it. It’s in my genes. This time it is not the Jean genes. Gramma Harriet is who I think I got this from. She would shop for and sew all year our Christmas presents. And she would tell us all year as she found treasures. I’d be on the phone with her in May and she drop in, “Ooooh, Rachel. You’re going to love what I got you for Christmas today. It is so perfect.” And she’d giggle with joy over it. At Thanksgiving she would have us load our car with 4 immense black trash just loaded with our gifts. They’d be all wrapped and labeled. The bags would be tied up tight. We’d take them home and store them in our basement until she came up for Christmas. It was torture knowing they were down there. I admit to sneaking down to the basement and untying the bags. I’d take out the gifts and give em a shake and a sniff. I’d hope and pray and smile. I couldn’t figure out what she had given us, but I knew they were quantity and quality.     I knew they were quality because of the beaver hats. That’s right, beaver hats. I can’t remember how young I was when I first heard the story. Gramma Harriet got very serious and sat me, Mom and Cuzzin down for a chat. She told us that when she was a little girl, there was a gift of a beaver hat. “The Five Brats” as she called the kids included her and four siblings. They had an Aunt Catherine. She would come over at Christmas and give them gifts. One year there was a box for each child. Gramma Harriet, Louise, Marian, Bob and Lenny all opened their own. Inside each box was a beaver hat. It was big and brown. It smelled funny. It was itchy. They had to say they loved it and give their Aunt a kiss. They had to wear it whenever they might see their Aunt. Gramma Harriet retold this tale with all due familial love and respect. “I don’t want any beaver hats at our Christmas,” she said most firmly. If we didn’t like the gift, give it back to her and she’d return it. Absolutely, no worries. I loved the gifts I got. I loved her and I love the story. To this day, there are to be NO BEAVER HATS.

With that in mind, I love it trying to find JUST 1 perfect gift for everyone on my list. (Of course on the hunt for the Perfect 1, I accumulate a mountain of second and third place items. There’s the rub. There’s where I fail in the desired make-it-a-simple-and- downsized-Christmas.) The Perfect 1 might be something I make or it might be a shopping treasure. For Tim this year it was the three fleece with crochet edged blankets that I made him. Jason helped me pick out fleece on our Black Friday excursion, to complete our Boston team quartet. Last year he got the Red Sox blanket.  This year, the crochet hook flew as the Bruins, Patriots and Celtics Blankies were made. They are bigger this year and if possible, more soft and cozy. And I know Tim love, loves them. That is the best.

  1. Big bills– cold weather and indulgent holidays and sharing with those who have less is pricey. But I am reminded daily, that this is a quality problem in life. I am lucky to have such a problem. We are all happy and healthy in our home. That is a gift. That is a miracle. I GET to have big bills. I GET to. So many of my nearest and dearest aren’t here anymore. In A Christmas Carol, by Dickens he writes about the empty seat beside the fireside in Christmas Future if things don’t change. I think about the empty chairs around me now of loved ones who aren’t alive for this Christmas. I am lucky to be here. So many I love don’t have the treasure of getting one day older. I GET to, big bills and all.
  2. Biting cold– “Baby, its Cold Outside,” “I’ve Got my Love to Keep Me Warm,” a cup of tea, my Goddog Gus beside me, Ciro and crochet on my lap is the accompaniment for biting cold. I add extra seed in the bird feeders and lots of fresh suet. I make cocoa in the crockpot at school for the kids. I layer on the long-johns. Cold hands, warm heart, hot coffee are stock and trade for this New England Gal. I wouldn’t have it any other way.
  3. Spectacular snow crystals– December brings the first real flakes of winter, very pretty and not bad to shovel. By this time, the memories of harsh winter past are long forgotten. I excitedly wait during Advent for the new snow. I love snow. It’s in my blood and bones. From a few flakes gently falling in the morning all the way to a blizzard howling and dumping two feet of snow over night, it’s part of being a New Englander.

I remember the first time I knew what a miracle snow was and how blessed I was to call New England home. It was my first year of teaching, over 20 years ago. I led a line of students at dismissal out the front door. The school, then and now was a mini United Nations. We had children from all over the world. In particular, we had students from Ghana. The families came right over and the children appeared in our classrooms, now calling this brand new land, home. The language and culture is so different, but kids are kids. Their love of laughter and learning is universal. Anyways, it was early December and I led my line out of school and headed down the front steps. I turned to check on my cherubs and saw this child, straight from Ghana, face lifted to the sky and feet still. It was snowing, the first snow. There was a gentle dusting of fresh powder covering the concrete and floating like feathers from the sky. I had barreled outside noticing my footprints in the snow and the flakes that were melting when they hit my face. I never wore a hat in those days and could feel the coolness of snow on the top of my head. The look on that child’s face as he met snow for the first time was a moment I will never forget. Stroke hasn’t erased that memory, nor age dulled the magic of his expression. The contrast of his dark skin with the white snow remains fresh in my mind’s eye. The look in his eye of wonder and awe became the only thing I could see that day. With all the students and teachers rushing on, I remember only the quiet snow meeting a child for the first time. No words were needed for the introduction. Words wouldn’t have worked and weren’t needed. I knew then what a gift I had in spectacular snow crystals every Advent. Sharing the gift of snow with a child, bearing witness to that moment is a treasured moment.

  1. Smiling lucky kids– Kids live in the present, full of hope and possibility. I see that every day. They possess a resilience and ability to move forward with grace that I try to emulate. James Taylor’s introduction to Have yourself a Merry Little Christmas has lines that stick in my heart, “Christmas future is far away. Christmas past is past. Christmas present is here today, bringing joy that may last…” That is my hope. That is my prayer. That is why I keep Christmas in my heart all year. This Christmas, this day is here now. FACT! Live in it, is what the day wants. And if I do, the momentum and yield may carry over into tomorrow. It is another way, a holly jolly way of saying that my stroke recovery is progressive. Every day I get to live and put in the effort, I am building for a better tomorrow. It is true for me. I see it is true for kids too. Their natural curiosity leads them to try new things. When it feels good to do so and they get better at it, the keep doing it. It is that simple. I can do that too. Some days and some kids have a much harder road than others. Life has knocked them back already.   They live in fear. They are discouraged by life. Adults have let them down. Life has already let them down. Finding a way to reach inside the child and show them the magnificent miracle that I see in them…that is the biggest rush going. The smile may be harder to find, but when you do it lights up the darkest night. That light is somehow easier to find at Christmas. I know I am gentler today than other days of the year. Maybe others are too. It is certainly a sweeter time of year that focuses on children. I am blessed that Jason’s life has been gentler than most of my students. He smiles a lot. The village that surrounds him and shows me how to give him the best, is rich in love and experience. (I was pretty good at reaching other people’s kids. I had no idea how to do that 24/7 with my own. Fortunately, I don’t have to. Jason’s world and heart are filled with the best people looking out for him, inspiring him and giving him always a helping hand.) With Advent, the whole world focuses more on kids. (Not enough and not all year. But it’s a start.) I feel like a kid and I look for the smiles on children’s faces that Christmas is real and true. There is a twinkle in the eye that shows the miracle of Christmas. Something good happened in the day and the child celebrates. The child, for a moment knows that they are the best present of the season. They are that important. It is all about them. And “yes, Virginia there is a Santa Claus.”
  2. Sobbing broken hearts– Charles Dickens’ Christmas Carol speaks in my mind throughout the year. It echoes through my bones and soul for as long as I have been alive. The tradition of my Dad reading it aloud, me growing to read parts with him, watching versions of it on TV, and reading it and quoting it to my students is every present and ever strong. The story is my story. It comforts and inspires me. But in December, the voice is definitely louder.   In Stave One, Scrooge is Scrooge. His nephew is hope and his words paint an Advent image.

“There are many things from which I might have derived good, by

which I have not profited, I dare say,” returned the nephew. “Christmas

among the rest. But I am sure I have always thought of Christmas time,

when it has come round – apart from the veneration due to its sacred

name and origin, if anything belonging to it can be apart from that – as

a good time: a kind, forgiving, charitable, pleasant time: the only time I

know of, in the long calendar of the year, when men and women seem

by one consent to open their shut-up hearts freely, and to think of

people below them as if they really were fellow-passengers to the grave,

and not another race of creatures bound on other journeys. And

therefore, uncle, though it has never put a scrap of gold or silver in my

pocket, I believe that it has done me good, and will do me good; and I

say, God bless it!” (Dickens, Stave 1) Rock on! The season meets us where we are at, broken hearts and all. It does not change us. It does not heal us. But Advent is surely a foot in the door for all, to see a flicker of light and love. And we may choose to feed the flame. I have had seasons where the joy of Christmas was not mine. I was Scrooge. I hated God and Christmas after my stroke for leaving me disabled. I wished I was dead at Christmas. I tried to die too. I’ve had deaths that I mourned savagely at the holidays. I cried out to God with my grief and would not celebrate the season without my beloved. I’ve been dumped out of relationships that I believed were true and forever. My heart was raw and felt no Merry Christmas at all. Things have happened in my community, my world and to Earth that seem cover all light from the the planet, from me. Extreme as this view may be, it come from my heart. My heart is passionate. My soul is on fire. (Sagitarrians are fire signs after all.) That’s how I roll. The extreme side of my nature can flare and I lose all perspective. Christmas joy is nowhere to found. I have been there. I still can be. But somehow, with the practice of living life on life’s terms, not Rachel’s, I can find the light of Christmas and smile. The heart may be broken, but there is hope. There is always something good in today, if I look for it.

  1. 12. Special births, Crushing deaths. We look for miracles. – Once again, the extreme contrasts of Advent abound. I was born in December. So was Jesus. Jokingly, through the years I’ve said, “me and Jesus, we’re like this.” I would show my fingers crossed together. I was due after Christmas but came 11 days before. I’ve always said that I had to come out. I couldn’t miss Christmas! Jokes aside, being a winter baby is something I’ve always seen as tying me to the Christmas season. My aunt has a story too about my birth. She was a lead dancer for the Jose Limon Dance Company. Jose began the company and choreographed the dance. His work inspired so many, especially my aunt. She worked for him, with him and loved him. He died at the beginning of December in 1972 and it was a huge loss for my aunt. The only good thing, she always tells me, about 1972 was my birth. Jose’s life ended and mine began. It comforts her and it comforts me, that Christmas 1972 story. The cycle seems true about life and death running together and apart. It reminds that when we lose a love, look for the new light to be born. We are better for the lives of our loved ones that have died. They pass the torch to us. And we can be that kind of light to a new life just beginning. Really and truly, we can.
  2. 13. Life at its most extreme during Advent. The weather outside is certainly extreme and often “frightful,” as the song goes. We had a day in the sixties. I walked Gus around the block in my flip-flops. School was cancelled another day due to the cold. It was biting and brutal. The wind raged. The rain was colder. The furnace inside me and the house struggle with the sudden changes. The cold is inside my right arm again. It’s dug in deep and it happened so fast. I forgot it would happen. Or I deny that it will. It did and it hurts. Mostly it feels like you could snap my arm off, it seems that brittle with cold. (I am surprised how normal this has become to me now. It’s good that I recognize how resilient and tolerant of pain I am now. I am proud of how I carry on. But it is not good when I ignore myself. When I disregard how my body reacts to the extremes, my body gives an extreme reaction to get my attention. I get wicked sick. And that is a bummer at any time of the year, especially Christmas. I gotta do better with this.)

That aside, as cold as my arm is, my heart is equally warm. This constant push and pull on the body and soul is stressful. It is impossible for anyone to regulate and get on an even keel. And the even keel is where I do best. The blessings and disasters both require more from us. The births and deaths this season match the blessing and disasters. They are such high-highs and such low-lows. We are yanked on a roller coaster of emotions. We feel more deeply. I have seen babies born this year to friends or announcements that they are coming. What lucky babies they are and how blessed are the families that they join. Babies are a blessing. And happy am I when I hear of babies coming to families that will give them the life they deserve. I stand by my belief; no child asks to be here. Some get lucky and are given the world. Some, not so much. I hate that. I hate to use the word “hate.” But there is no other word that is true. I love that this year I have seen friends ogle their newest family members and share the innocence and beauty with me. I think of the scene in “The Lion King,” where the young cub is held by proud papa high above the land for all in the kingdom to see. All creatures seem to vow to support the wondrous new life as it grows.  That is how I think of it. I will be there to help the new lives grow.

The birth is one end of a promise we call life. Death is the other. It is certain. That kind of talk, while I KNOW it is true, scares the crap out of me. I repeat to soothe myself, “may you be happy in the life you chosen. May you be happy in the life you have chosen?” Over and over again I repeat Dickens’ words as a mantra. I breathe in peace and the freak out moment passes. This year many friends have died, and near the holidays and of heart disease: Alan Thicke, Carrie Fisher, Debbie Reynolds, Gary Shandling, Florence Henderson, Mohammed Ali, and Prince, Patty Duke, Gene Wilder, Eli Wiesel, Alan Rickman, George Michael, Janet Reno, Arnold Palmer and Shimon Peres are but a few of the famous people gone this year. Beloved sons, fathers, mothers and special friends were taken before their time. They were gone before we were ready to live without them. I believe that when someone dies, they have done everything they were meant to do in THIS life. My Buddhist Reiki Master Nancy lived this. And through her, I do believe it. Each life makes so much difference. Each life is sacred. And I know that this is little comfort to me or anyone else when our loved one dies. But I choose to repeat the phrase and then focus on what I GOT from having that person in the my life. I count and list the infinite ways that he/she touched me. It helps. It’s hard,- but it helps.

  1. 14. We turn to each other.- This is so true. I reach out more during Advent. And I feel the hand of others more often comes my way.   The season rolls around and I don’t feel alone. One way I feel more connected is through the tradition of the holiday cards. We write Christmas cards and reflect on our year and send love to others. This year we did the cards together. The mens actually did most of it. It feels good to mail a robust stack of bright colored envelopes headed to loved ones near and far. And then to my surprise, the cards start coming in the post to us. Each one, a treasure. Tim hung long red ribbons around the dining room windows. Each card is hung on those ribbons. Each card brings holiday cheer from its sender to us. It’s such an easy way to connect. On a more hands-on note, we bake cookies and treats and share them with friends and neighbors. In particular we make them for Jason’s teachers at school and Tae Kwon Do. IT is a sweet good wish and thank you for all they do to support our son. Fun, Yummy and building connections! Within the home, we turn to each other for more hugs and gentleness. We turn, (I really do try to do this) and look each other in the eye. I try to look right at my peeps and give them a hug, more often. And if I can’t hug, I do bake. Either way, it is my sweet effort to turn and pay attention to my fellow travelers. Marley’s Ghost talks about the lack of connection in his life, his lack of humanity and we know it is NOT a good thing. He begs Scrooge to see his errors and connect in this life. The picture he paints without this action is bleak.

“I wear the chain I forged in life,” replied the Ghost. “I made it link by

link, and yard by yard; I girded it on of my own free will, and of my

own free will I wore it. ”

  1. And we turn to the miraculous for help. Perhaps we do it out of impulsive desperation. – When I am not practicing connection, when I am not choosing to make actions that bring me closer to my fellows, I am isolating. That is an action. I do it and it is NOT a good place for Rachel. I have learned that my lack of participation in the world is indeed my CHOICE. I opt out and I suffer. At times like this, I feel so sad, alone, lonely and just plain gross. That disconnected state is like death for me. Whatever makes a chink in my wall, what ever makes me move back towards life, whoever shows me kindness is a miracle in my book. I cry out for help in my prayers, even though my lips remain silent. My heart aches for the help and love to heal me. When it comes, and I thought no one was listening or cared, that is a miracle to me. It changes everything in an instant. And I am so grateful.

This month, my students made one of my many miracles. It was my 44th birthday on December 14th. And I love my birthday. I am so proud that I get to get older. I get to get gray hairs. So many do not. And I get to get presents. I love that. I own it.

The season of advent was rushing forward and I wanted to love it. I wanted to enjoy it. I wanted to celebrate my birthday. But I wasn’t. I was too busy with life. I was too caught up in the holiday decorations and planning family celebrations. The to-do lists and piles of half finished projects were mammoth. I was overloading every circuit in my system making every moment a perfectly wrapped, quality time, holiday moment for my family, being there for my students and trying to get through all the curriculum requirements before the break. The rush-rush made me nauseous dizzy and open for every sick bug in the universe. Ugh. Christmas, my favorite time of the year was all around me and I was missing it in my psychotic frenzy. By the time my birthday got here, I was cooked. Stick a fork in me, I was done. (I hated feeling that way but I was whirling so fast…)

I went to school on my birthday, actually just trying to get through the day (ick) albeit with a big smile plastered on my face.   I went out on the school yard to pick up my class and as soon as they saw me, the singing began. “Happy Birthday Mrs. Henry” So nice, a bit awkward in front of everyone, but nice. Upstairs in our room, the presents started to pile up on my desk. Yikes. I was over whelmed. The card from one young lady, I still carry in my purse. She thanked me and G2 for helping her learn and love reading. I started to cry. I’d had her sister at my first school a few years ago. She was just to this country from the war-torn middle east. God knows what she had been through. All I saw was this wondrous, beautiful young woman who came to school every day and made me work hard to stay just one step ahead of her. She ended the year being valedictorian of our class. When I knew I was blessed to have another member of the family, I was so excited. Day one of meeting her, I knew she was a wonder in her own right. Full is smiles and games, this girl. She works so hard and has grown more than any other student in class, if I am honest. As serious about her studies, she is joyful and plays, smiling and joking. I smile to think of her. I try to wear my day as she seems to, waiting for fun and to learn. What a gift.

I had made hot cocoa in the crock pot with marshmallows and candy canes to celebrate. My kid’s had informed that I hadn’t baked for them for a long time and my birthday would be a good time to get back in the habit. But then, my G2 (Greek Goddess Assistant) arrived with goodies for the kids and a slice of cake for me from my fave bakery, The Crown. I was made sheepishly humble as the festivities grew and one student brought in a vanilla cake with chocolate frosting he had made with his mom for my birthday. I was digging into my slice of cake at 10:30 am on my 44th birthday when I had to start slowing down and notice what was happening. (I know the sugar from the cake should have made me speed up and whirl, but thankfully the sugar knew which way to help improve my day.) My students were making a long, very sweet moment and I was a part of it. They were laughing and smiling and somewhere in it, I realized this moment was happening in the space we had created, in my classroom. Maybe I was a part of the joy. Maybe I allowed kids to be kids? Maybe. That would be a great thing in my book. I got about the curriculum of the day in between sweet treats and the day flew fast. At the end of the day, in the hustle and bustle of clean-up, the miracle hit me. An avid student, as I call him, came forward with mini cupcakes for the class in my honor, and a CARD. It was the biggest card I’d ever seen. I can’t imagine where he got the red paper. He had folded it, found two gigantic bows and written loud and proud “HAPPY B2 YOU…AND MANY MORE.” It was cool, just like him. And then he’d had our entire class sign it too. The avid student had got up around four in the morning, he said to make the card for me. I met his gaze when he handed me the card. He’s one of a dying breed that will make eye contact and really show you that he sees you and hears you. I try to show him the same respect because he teaches me, that it matters. “Thank you,” was what I read in his big, beautiful eyes. It doesn’t get any better than that. What a miracle!

My husband made another miracle. We were in line at the supermarket one night. Jason was in Tae Kwon Do and we were getting some supplies, probably more wet cat food for Ciro, the elder statesman at home. We probably had vanilla eggnog in the basket for Jason’s mug or more likely my coffee. What a sweet indulgence. I HAD to go to the supermarket and get a few ingredients I forgot for an upcoming family party. There are always a few more things that ya need when you think the shopping is all done. How does that always happen? I was frustrated and rushing and not at all JOY to the World or JINGLE Bells. The mood, my mood and I own it, was Grinch. Tim was in front of me as I got our items ready to check out. The cart was loaded to the brim. How had that even happened? I was just here yesterday? I dashed out of line to get the one last item that I just had to have while Tim stayed with the cart. We had a plan. I had checked my watch and time was ticking to get back up the road for Jason. I was go-go-go and then Tim said, “You only got a bag. You go ahead of us,” to the man in line behind me. I froze and spun. The gentleman was by himself with arms laden. And Tim told him to go before our cyclone of groceries. The man smiled and uttered grateful thanks. I pulled the cart back and the man moved forward. He seemed to be standing a bit taller as he walked by. My husband was already unloading our wagon and moving on with the grocery checkout.   I stood still. It took just a minute. I heard the best man I know say this simple line and with it he gave me the gift of Christmas. This simple act of kindness, connecting with his fellow and helping, changed me. My husband does this kind of thing all the time. He really does. Amazing! I am in awe. In that moment, I stopped spinning and smiled. I stayed smiling for days and even now when I think of who has chosen to walk through life with me, I smile.


  1. Scrooge taught me what my business is in life and what taking care of business really means. Well really it was Marley’s Ghost, but Scrooge and I both got it in the end.

“Not to know that any Christian spirit working kindly

in its little sphere, whatever it may be, will find its mortal life too short

for its vast means of usefulness. Not to know that no space of regret

can make amends for one life’s opportunity misused! Yet such was I!

Oh! such was I!”

“But you were always a good man of business, Jacob,” faltered Scrooge,

who now began to apply this to himself.

“Business!” cried the Ghost, wringing its hands again. “Mankind was

my business. The common welfare was my business; charity, mercy,

forbearance, and benevolence, were, all, my business. The dealings of

my trade were but a drop of water in the comprehensive ocean of my

business!” (Dickens, Stave 1)


So, when we have no answers left, we are ready. It is then that I know I am teachable and the world opens to me. When we are sick of crying “why me, why me” and never getting an answer that works, we become open to new questions. When the question became “why not me?,” I found peace and joy in living. I got right sized and that size fit right in with my fellows. When miracles can’t possibly occur to a person like me in a world like this, and then I find myself catching snowflakes on my tongue, smiling and singing, I am proved wrong. It is a miracle whenever I stop fighting the world and myself, accept reality, breathe a prayer and then feel the magic and love that was always within and without me. Then I find the joy of Christmas in every action, every day. That is my gift, in the present.


  1. I still believe in Santa Claus. -More and more each day. Some parts of life and this world get raw and nasty as I GET to get older. I could get discouraged and depressed. But I can’t do that. It is no longer in my nature or practice to do that. And the fact that I spend all day, every day around my kid or yours, I gotta do better for them. They are here and I have a responsibility to make the world better, for them. They deserve it. They are so worth it. I need the tangible figure of the white bearded, twinkly eyed, gent in a red suit who obviously enjoys sweets to keep me focused on the good. I need to consider my status on the Naughty or Nice list, on a daily basis. I need that system of checks and balances to direct my next steps. I am easily distracted by trinkets and woes. I am influenced by media and men. I am restless and frequently irritable. But I can’t get that way with Santa before me. He brings out the best in me. He is always there for me. And when I know I am doing something good, I feel like I’m working for Santa. There is no better action for me.



December 2003

The month starts out with my blood running like lava; hot and fast and not at all healthy. Welcome Advent. I am on only 5 mgs. of Coumadin a day until the end of the first week of the month. Ah well. I had really hoped that I was leveling out with the blood work. I had really hoped the levels would get stable, stay stable and that I could get off the Coumadin. I had hoped it would be normal. I wanted to be normal. Ah well.

Appointments with OT, PT, Carole and counseling continue every day of the week. There is no rest. THEY are gearing back to send me back to work for January. In a month, I will be a teacher again. So this is the final push to get me ready. Ready or not, here I go. They trained me. They employed me. Then another They, saved me and now it is time to start paying THEM all back. Back to the old life I go. But how is that possible? I don’t fit in that world. How do I go back before 4/4/03 at 10:10 am and be who I was then? No one in those places notices that I am not the same girl. No one from THEY and Them really sees me. No one really looks at me! I think they are scared of me, like having a stroke is catching. They are afraid they will have to take care of me when they are old, not the other way around. I think they are disgusted by me, like I should have died rather than slowly rot. They don’t know what to do with me, old person’s disease in a young person’s body. They feel bad for me. They have no idea that you can change so much so fast. They don’t want to know. And They don’t have to, I guess. This Advent Season is for “the teacher formerly known as Rachel” to wait to go back to the old life in the new year. Their world will be back to normal. That’s what is the next step, I guess. That’s what they tell me.

The only Christmassy thing happens at the end of the first week of December. It is all thanks to Farmer Ken. He was such a gift at the Blues Thanksgiving. He delivered wreaths to seven different families that day as well as enjoying the feast at my house. What gifts. I only know he did this because of the thank you card he wrote to me on Thanksgiving night.   He confessed that he was really a very shy person and apprehensive about coming to my house that day. Amazing that he could share that with me. He is honest. No one else is, certainly not me. He did overcome his fear, show up and he said that he had a great time. But he went on to write, “You’ve been pretty unlucky this year, but you’re really very lucky in many ways-you have a great family. I can tell how much they love you- and that makes life bearable and worth living.” Thank goodness somebody said 2003 was not my year. No dancing around it, Farmer Ken was honest and that made me realize how much I have actually been through and that it hasn’t been good stuff. It’s been a big load of unlucky crap that sucks. For my 30th freaking birthday, I had my life and hopes and plans trashed. Seriously, screwed up! This truth didn’t hurt me, it freed me.

It was good to hear that he felt welcome and saw love in my family. I know that they love me and I should think of them more as a source of strength right now. I don’t because I don’t want to be any more of a disappointing, draining burden-downer than I have been. Maybe I should reach out to them more. I think Farmer Ken thinks that is a good idea. I think he sees me withdrawing. I don’t know how he knows, but I have been. I haven’t gotten together with my friends at all lately. I don’t even call them. I don’t really reach out to my family either.   I just don’t have anything to say.

Somehow he knows this and his words tell me that he really sees ME as I am now. He’s not stuck on the image of me before. He invested in who I was in the hospital. He got to know me then and seems to care about that person. Farmer Ken makes me feel almost good about who I am and how far I have come since 4/4/03. I almost feel proud of what I have survived when I am with him. That acceptance is a gift. I feel so invisible and unnaceptable most of the time. Then Farmer Ken goes on to talk about things that make life “bearable and worth living.” It is not the Happy, Happy, Joy, Joy, B.S. line of goods that I hear so often. Nor is it the Poor Rachel, I feel so sorry for poor disabled Rachel look that I see in everyones’ eyes. Again he is honest. And this time it makes me cry. I have been trying to be happy since the stroke. I try to be joyful and grateful and elated because that I have come so far. But that is not where I’m at. Life is not bearable for me anymore. I don’t consider this MY life. I don’t know whose life or what it is. I keep thinking I need to be happy even though I am not. I want to feel on top of the world again. I want that rush from being young and free. Farmer Ken’s words show me something different. He does so much good in life and he is able to do so many things . And yet he doesn’t claim to be ecstatic 24/7. He doesn’t say that I should be off my head with joy, ever. I hear him saying that right now, I just need to bear with the life I have. Maybe life isn’t about joy and passion.  Maybe life isn’t about marriage and family. Maybe it’s about bearing the stroke. Maybe it’s just about surviving. Maybe. It’s a much more low-key way of thinking. I mean he is older than I am, but still. I don’t know. But his note, his words and who I am around him, is more bearable than the rest of my life.

And so of course, the most Christmassy part of this Advent season, comes from Farmer Ken. He is gifting a tree to Mom for Christmas from his family farm. Delivery is included. I guess I am not up for a tree of my own. I don’t know. I’ll put Gramma Harriet’s little ceramic tree with the colored lights. I’ll put it in the living room and leave the light on until Epiphany. It can’t hurt to keep a light burning. Anyway, fate says that the real tree will go to Mom’s house. I will go along for the ride. But it turns out to be so much more. Lola is my constant companion so she is included in the trip. There is snow on the ground and parking is tough, but Farmer Ken finds a spot at Mom’s for his little white sleigh/pick-up truck. He comes to her door and escorts Mom to the truck. Lola mushes along with me making ever smaller tracks behind Ken’s big boots.

The afternoon light is fading fast as we pile in the cab together. Ken in the driver’s seat, Lola’s on my lap in the middle and Mom next. It is a tight and cozy fit. Snug seating and heat blasting, we head up through the hills to the farm. North and west into the hills we go. The temperature drops fast and the roads narrow all the way to the wee village of New Braintree. I haven’t heard of the place and certainly haven’t been near it until today. It is like Farmer Ken, full of life and light and love. It must be where he gets it and I am glad to be going to the source. Maybe some life will get in me. At the very top of the highest hill I can see, two roads cross. A church is on the right corner and the farm on the left. The farmhouse fills the corner. It reminds of Wessyfoo. That is a good thing. There are green wreaths and roping, red bows and flickering candles adorning the ancient farmhouse. It almost looks like it is smiling at us and welcoming us to hallowed ground.   I feel it is happy we are here. That is a good feeling. We walk up to the kitchen door on the side of house. Inside, Ken’s mom welcomes us to come sit by the fire, have a cup of coffee and a scone. The warm lights and special grace of that room, that mom and that place are like magic. It’s like being inside the snow globe. You know the snow globes that sit on the mantle at Christmas? The ones we all have with the idyllic scenes inside that you shake and the snow falls perfectly everytime. I used to collect them. I felt powerful when I shook them and made winter happen inside the globe. Now I feel the peace that must be inside the globe. The snow and cold world whirls around outside me. For once in the past nine months, I am not outside life, looking in. I am not cold and scared. I am not shaken up by life. For just a moment, this moment, I am inside. I am safe with Lola, in Farmer Ken’s golden home, warm and snug. I feel alive for a moment. I feel every part of me smiling and warm for a time. I wish this moment would last.

It is a generous spoon of sugar in my hot coffee and real cream too. The scone appears magically. It is fresh out of the big country oven as if it was made just for me. Farmer Ken’s mom serves the flaky biscuit with butter and whipped cream just like he told us she would. It’s a magical combination. Every bite I took was heaven. It slides down my throat easily every time. I made sure that every morsel had biscuit and butter and cream. It was sweet and creamy and flaky and fed my soul. It was so strange to feel as good as I did in that kitchen, savoring that scone, with those angels. I made it last as long as I could. Lola got a bite too. I shared with her of course. The twinkle in her eyes told me she was happy too. She knew this place was special. She also was hitting me up for another bite, soon. When every last crumb was gone, we headed out to get Mom’s tree. Just down the walk from kitchen side of the farmhouse, Farmer Ken’s Sugarhouse sits, frosted with snow and quietly waiting its turn in the spring. Dark now, but just resting. The spring sap will wake the little Sugarhouse. All burners and boilers will fire for days making the liquid gold. That maple syrup challenged my swallow to rise and shine. Of that and the magic that comes from this spot, I am sure.

All the lights and attention tonight are on his brother’s tree farm stand across the drive. Cars are parked out front and families are packed inside, picking the perfect tree for Christmas.   I smell mulled cider with cinammon in between the pine scents. IT is over in the corner, waiting and warming. That is where I head while others look through the trees. I am not sure what kind of trees they are. Farmer Ken’s brother told me, but I forget. They are sharp needled trees, fresh and quick to draw blood if you touch them wrong. I like that. This is not the year for our usual soft and gentle fir. Lola and I cozy up together near the cider. I love to huddle with her, imagining we are warm and strong while we watch the families get their trees. Small children with ruddy red cheeks find the perfect tree and beg Moms and Dads to buy that one! They make their choice known loud for all to hear and back it up with a tug on a coat sleeve, securing the deal. Mom is around with Farmer Ken finding her perfect tree. Pitch darkness has fallen hard outside the tree shed, and biting cold too. But in here, it is Christmas twinkle lights and happy hearts lit up with hope. I can feel their spirit of the season trying to come through my heavy winter coat. It tries. Lola’s warmth and fur is what makes it through. I love to watch. And I love Farmer Ken for giving me this quintessential Christmas moment right now. It is bright and cheery and filling every sense of mine.

Somehow he gets the tree in the truck and secures it. We pile back in and sing carols all our way back to Mom’s with our own cold reddened cheeks and twinkling Christmas eyes. (In reality Mom sings out loud, Farmer Ken too. Me, not so much. I don’t sing anymore.) Being next to Farmer Ken, I feel Christmas in my heart. Thank you. No one knows what this means to me or what I feel like right now, except Lola of course. She knows all, without a word from me. I offer no words tonight, but take in this moment. There is no way I could explain it and my face is too twisted to even try. I won’t bother. I gave up on that road months ago. But there is a moment of Christmas peace, nonetheless.

And when we are back and the spirited sleigh and Farmer leave, so leaves my Christmas spirit. I felt it go with him. But I am glad for it. It was perfect. I will treasure it. I go about the business of the tree set up and help Mom decorate. Lola and I head back home and I get right into the shower. It takes three long showers that night before the bones on my right side begin to thaw from the chill of the hill top farm. But this time it is a good chill. That night when I close my eyes, I have a beautiful scene to go to. Thank you Farmer Ken.

A week later it is my 31st birthday. And there is no beautiful scene to go to. I see myself in the mirror and I hear myself too. What a gross concoction I have become. I have morphed into half twisted barbed wire like muscles and half slackened, oozing, puffy puddy. Not pretty. But I was once. I really was. I can see that now. Nine months ago I was actually almost beautiful and I never knew it or appreciated it. I was young and strong and so very stupid. What a waste. Now, on my 31st birthday, I am ancient like that farm on the hill. But I don’t have the luster and beauty. I am an old, deflated, lifeless mess. It happened so fast. And I skipped over the glory days. I see that now. Why does every one deny this is real? Why don’t they see the truth of Rachel now? Why? I get no answer from this question I beg to god.

So on this day, and for the rest going forward, I’ll lie. It’s just easier. Others don’t get it. Others won’t really see me. And I am too tired to give a crap. I don’t want to hurt their feelings. I really don’t want others to feel what I feel every day. It is too horrible. So I will lie. Others congratulate me and want to celebrate my birthday. They that knew me before the stroke and them that have helped me since the stroke wish me Happy Birthday. Ick and Smile and Thank You. My mother says we must celebrate my life,especially this year. I know my birthday was a big moment in her life. The day your child is born is significant and special. I get that. I understand how much my stroke has put her through. I know it has been a very sad, unexpected and exhausting time for her taking care of me when she should be relaxing in retirement. I know this is true for my entire family, but only my mom lives in Worcester. So I have to muster up the goods to eat cake, open presents and hear Happy Birthday sung to me. They can’t make it better and I don’t want to make them feel worse. So with Lola at my side, I go. And I smile. How can they not see what I am really today? I can’t celebrate my 31st birthday. I am not who I was.

I breathe easier with my blessed freakin birthday behind me. Eleven days until Christmas and there is much to keep me busy. My Dr. S has written back to work orders that include an assistant for me for the rest of this school year. I am 31 years old, no family or kids of my own and I need help to make it through my work day, when that is all I will have in my life. Humiliating. Why is this my life?

I have appointments will all my people to set up things to do when I am back at work. Glenn wrote me a Home Program with 6 simple sets of exercises to do every day. At the top of the order he wrote my reminder, “DISCONNECT NECK.” I totally focus on my neck and what is happening at the site of my stroke at the back of my neck. I think about it all day. I obsess on that body part. And Glenn knows it. He knows that when I am back to work, I am supposed to focus on the children and teaching. He says I will be okay and to try not to worry about the next stroke. Try to be present in today, he says. And I roll my eyes. Really Glenn? Easy for you to say. So the reminder line that he follows up my eye roll with is printed on my Home Program. If I say that line and disconnect my neck, maybe I can focus on the job I am supposed to do. It shouldn’t be that hard. I mean, the right side of my body is pretty disconnected from me already because I can’t feel it much at all. That leaves the left side and my head. If I disconnect my neck, then I should just go on autopilot through my day. That’s it! I will disconnect totally and go on autopilot.

I have Carole on Christmas Eve. Christmas is on Friday. The weekend passes and I finish out the last week of the year back at all my therapies. Autopilot works. It’s not so bad. No one seems to notice.


December 2016

The box of “gratefuls”

All year we continued to say our “gratefuls” at every meal. It’s a good practice. And this year, we wrote them down once a day. It was easy to find things to write. Each day was full of great goodness and we had been practicing. Our “grateful” muscles had been used and stretched over the years. The twinkle in our eyes, much of the time is proof of this successful family action. The scraps of paper accumulated inside the wooden trunk that my brother-in-law made.

Even Rondo admired our efforts. He was included in many of our “gratefuls.”

The holiday season came and is going past. Winter is in full swing. Three seasons came before it. Moments, days and months went by. But it wasn’t a blur. On December 31st, 2016 we opened the box and read the slips. OK, we made a start. It’s going to take a month of meals to read them all. Jason, Tim and I took turns reading “gratefuls.” Once we got past the fact that Tim and I have hideous handwriting while Jason’s is essentially calligraphy, we could attend to the heart of our year. With each day, we remembered. “Oh yeah.” We all said. And more details spun off the slips of days throughout our year together. What a gift. The holidays psychotically whirled and we were all battling bugs. I thought I’d missed it. I knew my Christmas Mojo was gone, until we opened the box. Now it overflows like slips in the box, like wrapping paper flung about on Christmas morn.

Some of the slips we have read so far:

February 1- Jason played basketball with Dad. All were glad for a visit from our teacher friend who has retired to Florida. I was grateful for Women’s Heart Health Month and Jason’s great report card. Tim was glad it was Monday, new week and new jobs, and basketball with Jason.

September 18- Jason played catch with Dad and played with his Baba. Rachel made chili (of course food is in our gratefuls), did some writing and reached out for help with her medical issues. Tim did work, the Patriots won, we had chili, got to play catch with Jason.

March 12- Jason was grateful for soup, candy, playing with a friend and seeing a Red Tail Hawk. Rachel got Pansy’s for FX, went to Emerald Meats and saw a teacher friend. Tim loved the soup, and hung out with a friend too.

August 31- Jason was grateful to go to the park, had gym at school, it was Dad’s birthday and had a good day at school. Rachel likes her new team at school, loves that it’s Tim’s birthday. Tim- “It’s my birthday, apple pie, sesame chicken, this family, presents.”

March 16- Jason played at the park with his friends. Rachel won “Foodie Foto of the Week” for David Venable on QVC with Corned beef dinner. Tim worked, helped a friend and it was his plate of food that won the Foto!

June 16- Jason went to Tae Kwon Do and worked on cleaning his bedroom for its redo. He is proud to test for his next belt on Saturday. Rachel worked on the garden and Jason’s room, Coffee with Tim, tea with Mom and Jason trying FIRE CIDER! Tim is grateful for grilled shrimp dinner, work, and this family.

July 16- Jason had fun with Baba and went swimming in Rutland. Rachel is grateful for chili made with veggies from Fran Farmer and swimming with Jason in Rutland. Tim is grateful for work and chili.

January 30- Jason definitely grateful for Wessyfoo. Rachel loves Passionfruit peach Polar Seltzer is back and a bonfire in Wessy. Tim is grateful for Wessy and family.

January 21- Jason “It’s my birthday.” Tim said Jason’s bday, spaghetti and meatballs and less snow. Rachel said Jason’s birthday, a tree house birthday cake, Jennifer and LOLA.

July 28- Jason is grateful for the beach and Tae Kwon Do. He had a “very fun day at the ocean.” Rachel- Salisbury beach with Jason and Tim. Tim was grateful for the beach, hanging with the family and seeing friends at Tae Kwon Do.

April 4- Tim is grateful for Bone Broth Chicken Soup, Spring snow and Mom’s anniversary. Jason is grateful for school, library and science. Rachel is grateful for her 13th stroke anniversary, snow and Tim’s help with the blog.

Rachel’s Advent “Gratefuls”

November 25- It’s the day after Thanksgiving. Bring on Christmas. The first thing to get is the big box from the attic with all the Santa and Christmas sweatshirts. My teacher friend who retired to Florida left me her collection. And today I am so grateful to start wearing them, every day and night til February. I am grateful she gave them to me. They remind me of her and how blessed I am she is in my life. I am grateful that my grandmothers taught me how to rock this festive wardrobe. Gramma Harriet taught me to be comfortable and cozy and wear cheerful colors. Each top in the collection does that. Jean Granny showed me to own my style. Walk it and work it. Love it and others will too. I do. I am a mixture of my Grandmothers. I am so proud to be old enough to wear what I want, pay tribute to them and that’s that! Here’s to a stylin’, old-fashioned, Christmas collection.

December 10- Jason got to build a real, big, yummy Gingerbread house with his Auntie. He had a great time. Tim and I got to have four hours together, just the two of us, awake. Tim has lost 35 pounds this year. He looks fabulous and feels better. But his clothes were falling off him. We were very generously gifted a Department store card. Off we went to the mall before Christmas to get him a few fitted things. The gloves have “misplaced” already, but they are warm and styling, wherever they are. The skinny jeans were on sale and Tim looks mighty fine, I must say. I am so grateful for him. He took care of himself. I love that. This day was about taking care of him. I love that. Of course, we left the mall very hungry and that led to fresh, hot French fries just over the road. The air was cold and the fries were smoking. I burned my lips. Who cares? And we didn’t have to share any fries with Jason, a selfish moment that we thoroughly enjoyed.

December 22- The concert at Jason’s school is totally worth using a Personal Day from school in December. The concert is at 9am. The school is over 120 years old. There is no gym to hold the concert. The students stand in the hall, outside the library. Parents seat down the wide wooden floored main hall. That is not enough room to hold the holiday cheer. Proud parents and families flood the wide staircases going up left and right. The acoustics rock. There is not a bad seat or stand in the house. The smiles are contagious, most kids there love school. And their families love the school too. The music teacher is a gem and the kids sound like angels. It’s perfect. It is my quintessential, Norman Rockwellesque dream of childhood and school and Christmas. But it is real. I am so grateful. By 10am Tim and I have four hours together to talk, get breakfast and do Elf-work.   What a gift. We have a gift certificate from our niece for a diner near-by. Off we go, without Jason again for a yummy breakfast. I love watching people and I get my fill. We both love breakfast and we get our fill. Afterwards we can do some Elf work together. I love spending time with my husband. I love showing up for Jason. I love working for Santa. I love my life.

December 24th-Christmas Eve. I got the day in Wessyfoo with my Dad and Jenny and Uncle Richard. I got the night with Cuzzin and my mom. Greatest food all day. Too much food. Quality Problem. We are a small but fierce and loving family. That is true.

Santa provided gifts after supper of new P.J.’s or mugs or aprons for Christmas celebrating. It’s a new tradition. Jason loves it. We baked off 4 kinds of cookies for Santa. I thought we were out of carrots for the reindeer. Jason wondered if reindeer ate apples. We googled it on the way to Wessyfoo and sure enough, reindeer love apples. After supper and games and laughter and music, Jason and I set Santa a plate of cookies, with apples for the reindeer. We toddled off to bed soon after. I am so grateful for Jason’s smile at Christmas. He loves it. I love him. And I love my small but mighty, wild, wacky and wonderful family.

December 29- I had to put my Big-Girl-Panties on today, as Jennifer taught me. And it scared me shi**ess! And I avoided it since Christmas Day. We came upstairs on Christmas after spending the day downstairs at Mom’s for Christmas. Ciro was in his usual spot on the kitchen table waiting for a snack. The table, and his bowl on it, were barricaded by 3 chairs and a stool to try to prevent Cuzzin Greyhound from snarfing the lot. C.G. fears cats and therefore the food was in minimal danger if Ciro was right on top of it. We came in the kitchen and I looked at my baby. His right eye was brown. It was solid blood brown. My breath became quick and shallow and my chest started to clench. NOT my baby! NOT now! I’m NOT ready! In my mind he’d burst a blood clot, was blind and soon would be dead. And I froze and then I melted and just wanted to cry. I felt a cry in my throat I never get. I don’t allow myself to get that far. I just wanted to sob and not stop. My love for Ciro is pure. It is not complicated, at all. I just love him and he loves me. He is the only one who lived through my stroke and dark days with me. He is the only one who knows. It was hell for me. It was hell for him. Thank God he had Lola, I neglected them so. I don’t know how they made it. But they did. I did. It was a miracle. He is my miracle and I was not ready. I had done the big-girl-panty thing with Lola. She didn’t have one BAD day at the end. She had her bacon and we let her go. But not Ciro. Please. All this was screaming and sobbing in my head. I looked at Ciro. I focused on him and not Tim, Cuzzin, Jason or C.G. Ciro wanted food. Ciro was waiting. I gave him food. He ate. He cuddled. He swatted Rondo. He drank water and went to his litter box. He was acting fine. OK. I gotta chill out. We’ll see in the morning. If it is a clot, if it is his time, he’ll be gone in the morning. I knew I was riding a ridiculous roller coaster in my head. I would do the right thing, of course. He had lived a full life, yes. It wasn’t in my control, I know. But I also knew that he was the simplest, purest love in my life. In the familial and world Christmas Chaos, I was hit in the Achilles heel. I was vulnerable. I knew it. Breathe Rachel.

In the morning, there he was on top of his table waiting for food.   The eye looked better. It did. He ate. Ciro drank and cuddled and was just the same. The whirlwind in me and my house with Christmas was swirling. It was busy 24/7 and so I just bounced Ciro up to God and let it lie. I attended to my Cuzzin and avoided what could be happening with my angel. The eye went back to greenish and then brown again over a couple days. The family was very chill about it around me. We went to Wessyfoo for Christmas there and Cuzzin went home down south. In Wessyfoo, I had a quiet moment and was asked why not take him to the vet? If it was something that they could stop from getting worse, couldn’t I try? She was right. In my head I knew Ciro was worth $40 vet visit. I knew what lengths we would take and what we would not do. I knew. And so I called the vet.

This morning, at 920am, I took Ciro to the vet. I went by myself. Tim and Jason went on a job. I knew what to do. I told Tim and Jason to kiss Ciro before they left. I kissed Ciro. I breathed. I told him I loved him. I prayed. I drove to the vet and waited. If it was his time, I was ready to do right by Ciro. He would not suffer. I would take of him. I prepared myself that the carrier would be empty and my heart broken on the way home. And then reality hit. The vet said she wasn’t sure what it was. She was going to treat it as a trauma to the eye. She suggested he could have fallen and hit his eye. I pictured him boxing with Rondo on the dining room table upstairs, while we ate Roast Beef downstairs on Christmas Day. Rondo got him good and this was his fight wound. The bill was $72. I left with Ciro and antibiotic eye drops to give him for two weeks. That was it. It was that simple. My heart stayed in my throat all day and when I think of Ciro that day, I still cry. There is no tough love or strife or family malarkey with Ciro, just love. My heart to his and back. And I am so grateful for another day with him, green eyes and all.

December 30- Jean Granny’s birthday. I always like thinking of her after Christmas. She was an extra gift that came a few days late. This year I got to spend the day with Tim and Jason in Wessyfoo. It was cold and raw outside. I enjoyed sitting by the wood stove and cooking and having tea and a couple of my Dad’s mini mince pies by the Christmas tree. What I enjoyed the most was the laughter. I think it was giggling really, from the gut. Jason and Granddad were taking a hot tub. Both had been battling winter chills and the tub was just the medicine. The vents needed to be cleared so both went under water, submerging to scrape gunk off the vents. Jason went down for 7 seconds and my Dad for 20 seconds under the 104 degree waters. HOT! They gave me these stats when I walked in. I just had to follow the laughter. Some joke between them in the steam set them off. And I got to hear it. The laughter of my Dad and son combined and me there to hear it, a perfect moment. This is why I survived my stroke.

With Advent and every day, my hope is the same. Dickens wrote it and I live by it, “May you be happy in the life you have chosen.” I make a choice and do the action. Over and over again I practice. The gift I get from it, is a life that I love. It’s been the hardest lesson to learn. And it is difficult to keep it in the present. But it is that simple. Every day on those terms is a Christmas Miracle.

November 2003 & 2016


November’s Turkey Tawpic for Discussion: (after the turkey, we will all need coffee to battle the Tryptophan induced snooze.)

This month it’s all about Gratitude with a capital T, for Thanksgiving. The spiritual substance of Thanksgiving is simple to practice, but very hard to live by. Leonard Nimoy said,

“Because I have known despair, I value hope.

   Because I have tasted frustration, I value fulfillment.

   Because I have been lonely, I value love.”


I think most of us, turn our focus away from what we are lacking and what is wrong with ourselves and our world. In November, we pay attention to what we have and what is good in our lives. We focus on the positive. We practice giving thanks. We possibly, think blessings might be coming our way soon. We might even find ourselves more hopeful at this time of year. For me, it is the contrast in Nimoy’s words that are my truth. I practice being grateful every day, because I have lived years in despair, frustration and loneliness. I don’t want to go back to that life ever again. That’s not even living, as I define it now. That way is waiting for death, being inactive and silent, and giving nothing to the world. I am not that person anymore. I have changed and the events of my life have changed me. But I know how fast I could slip into the sullen sulk mode if I am not vigilant. The only prevention I know for not living that way again is to practice hope, find fulfillment in the moment and value love. The words can’t be ideals I think of as adjectives or nouns. I can’t just pay lip service. Verbs are what work for me. Action matters. Now.

With Nimoy’s words in mind and knowing what I know about myself, the truth is clear. My truth is obvious. I am so very thankful for my Stroke. I had to go through everything that I went through to have the hope, fulfillment and love I have now. Stroke shatters all illusions of who is in charge. I am powerless. Stroke has control. I do not. Life is fragile and tomorrow is not guaranteed. Stroke made me pray that there wouldn’t be a tomorrow. My Stroke made me want to die, and I am grateful for that now.   The severity of that reality freed me. I had nothing to lose and nowhere to go but up. The “up” is an action word for as long as I live. I have a choice about this part. My part is do the next right thing, all day and everyday. As a result of that choice, my life today is so full. Everything in my life now is built on the fact that I know my truth and don’t ever forget it.

This truth about me has moments of ooze. What I mean is that, when I am fired up about STROKE and FAST, it becomes bigger than me. It takes on a life of its own. Ideas start cranking and it feels good. I chase that feeling today. I open my mouth and share the ideas with my students or family because then I have to own the idea. Once the idea is out there, I have to act on it. It is a great way to make sure I follow through on ideas and turn them into something, soon. And where I might get stuck on how to do something with one of my lunatic notions, where I might toss in the towel in Frustration, when I share the idea, a way always comes about to execute the idea. Something great happens. I love it. Me and my big mouth…sometimes, it’s a good thing.

This month it was a good thing. And I am grateful for that. I am blessed to have another group of amazing young people in my class. There are all so different and dynamic. What a gift to spend my days with them! However, some things about kids at this pre-teen age remain constant. That consistency is both reassuring and distressing. There is always something out there, that grab’s their attention, admiration, and focus. 1-D was huge for a couple of years. Pokemon came, went and is back. Always something… This year the fad behavior is water bottle flipping. I am told that some genius started trying to toss the full bottle in the air with the goal being that it lands standing upright. OK… I guess it is a challenge. I guess someone video taped it and many someones watch it. Many someones try to copy the fad. The many practice and practice. One someone in particular, practices in my class all day long. It’s beyond annoying to me. And it is all my fault.

I want my kids to be at their best during school. I want them to use their primo super-neuroplastic brains for academic good. Being hydrated is crucial for overall good health. It is essential for a perky brain. (Another thing I learned from my stroke. Another reason to be grateful.) So I encourage all students to have their own water bottles and drink water all day long. Most do. One doesn’t. He has a water bottle, or three. But the lid doesn’t come off. That’s a good thing, considering he flips that bottle as often as he can. Over and over he flips the bottle and catches the bottle or lets the bottle land on the table. AHHHHHHHHHH! I go insane alternating between ignoring and intervening. The rest of the class reminds me that this is a cool challenge and that our student is really good at it. I heard this for September and October, ad nauseum.

In November, I am so grateful that the tune changed. Kids began talking about the Mannequin Challenge. Jason talked about it home too. From what I gather, somebody picks an action. They set the activity in frozen poses, like a mannequin. And then someone records the scenario and posts it on YouTube. I don’t really get it. But I love that it is silent, except for the loud accompanying musical track. One day as my student flipped his water bottle for the 10th time before 9:00 am, I intervened with my big mouth and a great idea. I suggested that he consider switching fads. He should try the mannequin challenge! My class erupted into laughter. Mrs. Henry finally had a clue about something cool going on in 2016 and made a funny! The laughter was immediately turned back on me as my genius student rebutted. His comeback was that his pencil and writing and listening and reading would be frozen if he accepted the challenge. Ouch. I hadn’t considered that. But he did. And the class laughed. During their long laugh at my expense, I had a thought, a light bulb, Ah Ha, ooze moment. What if we did another video for Stroke Awareness? Not everyone had done the World Stroke Day bit. The kids loved googling themselves and watching their Stroke Awareness video. They loved sharing it with their friends. They all know all the symptoms of Stroke and that is the most important thing. They have something to say and want to help. That power is incredible.  We were on a mission to do the next right thing to raise awareness.

You see, my kid’s believe me. They are the Stroke Heroes. I tell them everyday that they are the key to preventing stroke. Kids are everywhere and see everything. If we train kids to call 911 at the first sign of stroke, we will prevent stroke. We will SAVE BRAINS. The 80% of strokes that never need to happen are where we can make a difference. My students believe they are the solution and can help.   I am so grateful for them.

What if we did a Mannequin Challenge of the signs of STROKE? I opened my mouth and let this idea out. Students immediately switched from laughing at me to coming up with ideas to make the idea a reality. We had 4 school days before the Thanksgiving break. Kids are impulsive and fads change FAST. We wanted to strike while the idea was hot. I got another permission slip for the kids to take home. We talked about having two or three kids pose for each sign of FAST. Who had a face that could freeze and stay drooping down on one side for F-FACE? All the kids tried and 3 came out as winners. How would we make the A? The kids without skipping a beat let one arm drop down really fast and held the pose. We found a student that would sit on our stool and show the whole left side of his body becoming putty and losing all control. Perfect!

The kids asked next about S. How would we show Speech in a Mannequin Challenge? I thought that if we showed a group of kids in conversation it would work. One student would be having a stroke and look like they were talking, with mouth open and hands gesturing. Then two other students would show that they didn’t understand at all what their friend was saying with confused faces and body language. Perfect. They immediately set about practicing it, quietly, without talking. Go figure. I knew I was in a divinely inspired moment. My students were focused, working together and quiet. It was a miracle of modern education. (The miracle was over when we started Math class. Algebra wasn’t so inspiring.) Students said that for T- Time to call 911, we should have a group of students frozen tapping their watch to indicate time. They also said we should have someone on their phone, pretending to call 911. Great idea. I hadn’t thought of the phone. But they did. Great ooze!

We had to have music, they told me. One go-getter girl said that the STROKE song that we shared with our school for World STROKE Day would be perfect. And it was. One of my boys wanted to participate but didn’t want to be an actor. He became the DJ and sat at my desk handling the music. He was great. Great ooze, again! We had to have a FAST sign, a big one. Our G2 and two super students made a great sign in just a few minutes.

With no time to spare, we recorded. Our class was joining the other sixth grade at 9:00 am Friday. We had to have Something Great by then. That was the deadline. We practiced as many times as we could with our new awesome ending. We’d stop the music and unfreeze three kids who would speak our simple message. With passion for our work and confidence in our team, we got to it. It was both a whirlwind and a frozen moment in time. What a rush! The bell rung and we were done. Rachel Henry’s class did it again. https://www.youtube.com/watch?v=i7N0H_GDdDM I am so blessed. I am so thankful for them. They give me hope. You can’t do better than them. I challenge you to try.


November 2003

November 1 and 2: Coumadin- 12 mg.

It’s the weekend and I am tired. It’s a new kind of tired, called always utterly exhausted. I had PT, OT or Speech with Carole every single day during the week. And that was all I could do. I really wanted to do more, but I am so tired after each appointment and sleep is not really helpful. Rarely do I sleep well and never do I wake refreshed. My soul is dog tired, I think. And there is no amount of rest or rehabilitation that enlivens it. So I go to church with Mom on Sunday because it is good to get out. I want to see Farmer Ken and my minister. I feel safe with them. And they think I am something remarkable. I am hoping their view of me, rubs off on me.

I told Mom I’d go because it is All Souls Day at church and the choir will be doing Brahm’s Requiem. The music at the church is second to none. Each year Mom goes to this service, hears the requiem music and reflects on her mother and other people who have died. You can name your beloved deceased in front of the congregation. It is a good time to pay respects to the dead and be grateful for life. Mom says prayers, I think, with all the beautiful music playing. She grieves and mourns with her fellows. I do love the music. https://www.youtube.com/watch?v=rrk9QXmstlg And the words of Psalm 84

How lovely is your dwelling place,

Lord Almighty!

My soul yearns, even faints,

for the courts of the Lord;

my heart and my flesh cry out

for the living God.

3 Even the sparrow has found a home,

and the swallow a nest for herself,

where she may have her young—

a place near your altar,

Lord Almighty, my King and my God.

4 Blessed are those who dwell in your house;

they are ever praising you.

5 Blessed are those whose strength is in you,

whose hearts are set on pilgrimage.

6 As they pass through the Valley of Baka,

they make it a place of springs;

the autumn rains also cover it with pools.[d]

7 They go from strength to strength,

till each appears before God in Zion.

8 Hear my prayer, Lord God Almighty;

listen to me, God of Jacob.

9 Look on our shield,[e] O God;

look with favor on your anointed one.

10 Better is one day in your courts

than a thousand elsewhere;

I would rather be a doorkeeper in the house of my God

than dwell in the tents of the wicked.

11 For the Lord God is a sun and shield;

the Lord bestows favor and honor;

no good thing does he withhold

from those whose walk is blameless.

12 Lord Almighty,

blessed is the one who trusts in you. (Biblegateway.com)


I hear the words that comfort the living about those who have died.   I did love my Gramma Harriet, more than I can say. And I did mourn her death deeply in 1995. Now I celebrate her life by following her ways everyday.   That comforts me and keeps her alive inside me. (Right now, she is more alive in me than I am.) Each year at this service I hear the beautiful music and watch other people grieve their lost ones. I always enjoy the music, but not so much the grieving routine. That is not comforting to me. It seems to help Mom and the others, the music is incredible and so I go.

But the music makes me sad this year. Sitting still and quiet for so long makes me ache. I cannot settle my bones into the pew and relax with the music. My bones are not those that remembered the dead this time last year. That girl is gone, almost 7 months now. I feel like the music for the dead is for me.   “Blessed are those who dwell in your house; they are ever praising you. Blessed are those whose strength is in you, whose hearts are set on pilgrimage.” I kind of dwell is his house now. By his house, I mean God’s house; a god who broke me and wouldn’t let me die. I live by a god that keeps me alive, but doesn’t tell me why. This god doesn’t care that I am miserable. I don’t know who I am, but I know god doesn’t care. So I definitely live in HIS house, not my own.

My strength is from somewhere else. It is not mine. It is in me and I don’t know why. It keeps me going even when I don’t want to. The strength comes and goes for different activities than what I remember before 4/4/03.   I don’t get to choose anymore. I feel like a puppet with my strings being pulled. I hope whoever above is yanking them has mercy, soon. I mean how is this truly living? What in my life is really going somewhere? Where is the fullfillment? My heart does seem to be set on a pilgrimage. It has been such a journey since April 4th at 10:10 am and no one else seems to realize how different I am and how different life is now, for me. They don’t know what I know.

I am not in this life with two feet. My journey is certainly not of other 30 year olds. And I am not heading towards their life experiences of family and children and work. That is not my path. That is not my house. I am more and more solitary. My pilgrimage is headed away from their pursuits. So somehow I don’t feel right sitting in the pew listening to Brahms. I shouldn’t be sitting here listening to this and thinking like this when others mourn the really and truly dead.   It feels sacreligious. I feel like the living dead at the requiem mass.

And I am not really dead, but that is how I feel.  I gotta snap out of this. I think if my minister or Farmer Ken looked at me right now, they would know how crazy I am. What would they do? They’d have to do something. So I pull myself back to reality and feel the cold, hard wood of the pew. I rub my hands together inside my sleeves to try to warm my right arm or at least imagine it warming. I start to focus on making lists for Thanksgiving. I host it every year and this year can be no exception: apples for pie, baking powder for cookies, carrots, dog food, eggs…

November 3- Coumadin- 12 mg, I have PT at 10 am. We are working on my home routine. I have named it “Exercise 4 Life.” I put each exercise written on an index card and the cards are neatly in a file folder. I know I am going a bit over board with the whole thing. But I can. So I do!

I mean, what else do I have to do? My exercises are my job, my Life now. The first section is for Abs. The cards are green and my direction is to “go until pooped,” for those sit ups. The three hot pink cards are for back exercises. One of them is the Triple Threat and it is hard. I have to Bridge with the ball under my knees for a 10 count, then bridge for a 10 count with the ball under my calves, and without breaking, bridge ten times with the ball under the soles of my feet. I am on my back for all three. It is so hard. But I am better at it each day. (For what, I wonder) Next are the orange cards for ALL the upper body exercises. It took hours to write these cards and I had to break after each card. My hands are so weak. I try to practice what I learned in OT and grip well but not death grip tight. I try to sit up straight and keep my wrist loose and fluid. I try to think of it as homework. At home, I am humiliated doing this. My handwriting is so messy and I have no endurance. I can’t teach like this. I am worse off than a first grader. But I am organized like a pro. There are seven, yellow schedule cards, one for each day of the week. I read the print outs from everyone at PT and have tried to make a schedule that hits all the marks. It works. I have been practicing right when I get home from the session, for 10 minutes. I have to do my exercises right then or I know I won’t do them. And they do help. I am stronger, according to the grip machines and other tests. And this is my life right now. I might as well do it right.   I have laundry to do and plants to water. so the day passes.

November 4- Coumadin 12-mg. I love having Carole first thing in the morning. My best energy is then. Starting the day with her gives me hope.   I need hope. Today is election day. I go and vote right after my speech appointment. I really hope the good people stay and the bad go away. I need good people to fund better rehabilitation and help for me. I need help. So I vote. At home I take Lola for a good walk today and think in my head of more lists for Thanksgiving. My Dad and Dorothy are coming. Who else? And I think I am going to do a theme for the holiday. “A Blues Thanksgiving” is what I am leaning towards. I cuddle with Ciro and brush Lola a bit and clean up after Zoe. She is having a barfing week to beat the band. I try to snuggle her, but am afraid she will bite me or barf on me.

November 5- Coumadin 12 mg. All the incumbents won. That is mostly a good thing, for me. I have PT at 930 am and then OT at 11:00 am. I will bring my notebook so I can work on the “Blues Thanksgiving.” Should I make blue mashed potatoes? Nah. I ordered some really good blues music from a special they have been running on PBS. The sounds, words and overall vibe of the blues really suits me these days. I am going to invite Farmer Ken. Once I start making preparations for Thanksgiving, I feel good. I love that I can make this yummy, special day for people. My Gramma Harriet taught me well. When I channel her, I enjoy the simple work of the day. I really enjoy Lola too. She is a hoot to watch, so attentive and so beautiful. She makes me smile. Planning for Thanksgiving and Lola, good things.

November 6- Coumadin 12 mg. I go for bloodwork in my hospital, before my 9 am with Carole .The lab technician finds me in her suite. My INR is 4.7. Super fast runs my blood. It is kind of like my innards are liquefying and running like the rivers in the Underworld. Thank god I don’t say this out loud. The image born of my own freaky imagination, fascinates me. I am supposed to take NO Coumadin tomorrow. I have to remember that. Instead of banking on my memory, I write a note and put it inside Lola’s dish. That way, with her morning “feed me” antics, I will be sure to see it. I don’t know what I’d do without Lola.

November 7- NO Coumadin. (I toy with taking some just to see what happens. But Thanksgiving is in 3 weeks and so I don’t.) I have PT and OT back to back at 10:00 am and 10:45 am. Other than that I don’t do much. I lie down with the babies a bit and nap. For once I snooze easily. I don’t care if I can’t sleep tonight. How will I really notice the difference? I actually feel cozy. There is a lot of prep work I can do over the weekend for Turkey Day and I know I will be able to do more after this nice rest. I am so grateful for that one good snooze.

November 8 and 9- Coumadin- 6 mg per day. It’s the weekend again. I make the cranberry sauce and get it in the freezer. The cranberries pop in the pan with the sugar syrup. I am not a big fan of cranberry sauce. But Gramma Harriet had it at her feasts. And my family loves it with the turkey. My mom says it adds a good pop of color to the plate. She’s right. All the brown and white and beige foods, my favorites, need a bit of color-wow and I guess, the flavor-contrast. So I make it. I consider if there is a way to make it blue for the theme this year. Nope. Not an option. But fun to imagine. I got as far as “Charlie and the Chocolate Factory.” When Violet Beauregarde turns into a blueberry before our very eyes and has to be juiced to return to a somewhat normal state, it is magnificent. My mind imagined the vivid, larger than life BLUE for my Thanksgiving table.  But cranberry sauce simple won’t work with blueberries, not this year any way. I smile big imagining the scene.

This is My First Thanksgiving since the stroke. It’s a big deal for me. As I do the cranberry sauce and make lists, I think of Gramma Harriet and Her Thanksgivings.

Gramma Harriet did the whole of Thanksgiving for us, every year, all by herself. When I was little, I took for granted that everything, so yummy, just appeared before me. Mom and I would go down on Wednesday afternoon. Worcester had half days back then. After a quick lunch and packing up the car with our belongings and Miss Lily, our cat, we’d be on our way to the Cape.   Gramma Harriet’s house was directly behind the fire station. I’d see it on the main road and knew we were almost there. Then, we pulled into her driveway and knew that when I opened the car door, I’d smell her meat sauce cooking. It would be simmering on the stove, water ready for pasta to cook, a big green salad on the table and garlic bread smells coming from her stove.   After hugs and supper, she’d clean up the kitchen while we made a fire in the living room. I loved the raised hearth she had surrounding the fireplace. It was about a foot high and made the perfect perch. I’d sit on it and let my back get good and hot. From my spot, I could watch Gramma Harriet in the kitchen and I’d smile. We’d go to bed pretty early. It would take a while to warm up in bed. The fire had been so hot and the fresh sheets were icy by comparison. I’d be asleep pretty quickly in my “cozy nest,” as she called it.

As early as I’d go to sleep and as early as I’d wake up, I never beat Gramma Harriet. She was the first up. I’d hear her moving around the kitchen and smell things start “combobulating,” as she called cooking in process. I loved that about Gramma Harriet’s house. Her house was alive, always with her sounds and the smell of food or fire or even the powder she used on her skin. I felt safe with the life in that house. Maybe that is why it feels good now to be channeling her for my First Thanksgiving since the stroke. My house has sounds and smells of getting ready even though I am alone. That makes me feel a bit better. Hmm. Maybe that is why I’ve been leaving the kitchen light or bedroom TV on all the time, to bring some life into my house and hopefully into me. Hmm.

Anyway, Gramma Harriet would start with trips from the basement bringing up vegetables that had been keeping in the big fridge down stairs; mashed potatoes, squash, sweet potatoes and stuffing all in their round Pyrex bowls with the lids atop. The turkey would sit on the counter in the big oval pan with a wire rack under it which made easy work of getting at the juices for basting. Next, the bird would get lashings of salt pork on top and sage and onion stuffing inside. It looked quite noble even before she’d put it in the oven to cook. (The salt pork made for a practically self-basting bird. I have to remember to put salt pork on my shopping list for The Blues Thanksgiving.)

After breakfast and a quick trip to the beach to catch big gulps of salty ocean air and a bit of chilly wind on the face to wake me, I was ready and hungry to start helping out. Everything began with the folding table and I’d be the one to get it. It lived in the closet in my bedroom, her sewing room. Gramma Harriet called it the most important room in the house. I knew her sewing machine was a prized belonging. I knew she loved to sew. But I knew that when I was there, it was my room. And she loved me more than anything. I was proud I got to stay in the best room. The closet and the door formed one wall of the most important room in her house. The left wall of the room had a stacked metal cupboard which held many household products. The two white metal cabinets were in the corner. Now they are in my kitchen. I stacked them up near the back door. I covered the doors and shelves with contact paper that shows many herbs in green. Inside the top cabinet, I have all my tea towels divided by season. I love that collection. Some of the towels are Gramma Harriet’s still in use. The bottom cabinet has some plastic cubbies for food storage and products for the 4-leggeds: extra doggie bickies, flea and heartworm prevention for Lola, their toe nail clippers and extra cat treats. I think of Gramma Harriet when I open the doors to get one of my treasures and the familiar “clink” as the metal door shuts is comforting, always.

My twin sized bed is also along that left wall. My favorite sheets are the ginghamy sheets in pale pink, orange and green, both seventies and country at the same time.   The head of the bed is under the windows on the wall facing the door.   The windows look out on the back yard with the maple tree that she planted the year she moved in. Each year that maple grows bigger and faster and healthier than any other on the Cape. I don’t know why. But I grow better in this house too. Beyond the tree is the tall wooden fence and the fire station is behind that, always at the ready to help. Rounding the corner with the windows is the right hand wall with the true treasures of Gramma Harriet’s house. There is a long counter with the sewing machine and room to spread out materials. It is longer than the length of my bed opposite it. Under the counter end are 5 round lidded bins. They actually have a shiny quilting covering them. The lids are a snug fit. Just under the lid is a shallow, divided tray for threads, needles, bobbins and other findings. You can lift out that round tray. The rest of the bin is filled with patterns. The Butterick and Simplicity patterns overflow with the “How To,” for everything Gramma Harriet creates in that magical sewing room.   One bin is all the patterns of blouses she has made for Mom. I am amazed at the seams and buttons and shaping and overall precision required for the blouse. Yikes. I look at the patterns and they are written in Greek as far as I’m concerned. Each garment is a labor of love and comes out looking perfect. I don’t think this is Gramma Harriet’s favorite project. I know it’s not. I hear a lot of frustrated foul language coming from her when she works on a blouse. “Tedious,” is one of the words she uses when I ask about it. Everything has to be precise. She plows through though. She doesn’t quit. But she does put that project down for a bit and work on something simpler, faster and sure to bring a smile to her face. There are always several projects going. There is always something to do. It is not often that there are idle hands that could wreak havoc. She is always making something for others.

The other pattern bins have all sorts of projects inside. She has almost an entire bin of stuffed animal patterns. My Cuzzin and I are lucky to get some of them made for us. But we are not the main recipients of these treasures. The children at the hospital are the ones in her mind during the making. My Gramma Harriet makes quilts and cuddlies and colorful treasures for the children who are being treated at the Floating Hospital in Boston. It is for very sick children. Gramma Harriet talks about how the children need the color and softness while in the hospital. She talks about it and then gets into action. Each year, she takes a car load of stuffed dogs and cats, Raggedy Ann and Andy’s, and dinosaurs of varieties including pteradactyl and brontasaurus to the hospital. There are also dolls with brown or yellow yarn braids and two outfits each. She makes boxes covered in yarn and filled with a bell that jingles when you shake it. I always smile at that one. There are brightly covered smocks or “shifts” as she calls them that the children can wear over their hospital garb. They are so simple. Arms go through the front and it ties behind the neck. So simple and so perfect.

On the shelves beyond the machine are stacks and stacks of material. The pile I like the most is the one with the bright animal and alphabet materials that she find for the smocks and matching bags that can be tied to the hospital bed. The shelves are filled from floor to ceiling with neatly folded bits of fabric, large and small. Each piece waits and it wonders, with me, what it will become when Gramma Harriet gets her hands on it. Those shelves are right near the door to the room. The whole way around my room, her sewing room there are very important and useful treasures. A small room at the back of the house has so much in it, if you are smart enough to see it, is what I think. A small ranch house on a cul-de-sac behind the fire station, two miles from the ocean. So many miss it, in their focus on the grander scene at the beach. But I know its treasures and I smile.

Every Thanksgiving morning, I complete my simple, but essential mission of getting the table out of the closet.   The table sets up by the front door at one end of the living room opposite the fireplace. I’d put out the paper plates and napkins with the turkeys or cornacopia on them. Gramma Harriet would start filling monkey pod bowls and plates and platters with appetizers, nibbles and hor’deurves. I made sure to carry out the bowl of black olives and the bowl of peanuts. As soon as I set them on the table, I’d start. I loved to take a peanut, put it inside the black olive and pop it into my mouth. As I crunched and chewed and savored the morsel, I’d start constructing the next peanut-olive delight! Back to the kitchen I went and got a bowl of crackers and the spreadable garlic cheese, probably Boursin. At the table I’d have to test each kind of cracker with the cheese. I like the stoned wheat crackers the best, salty and yum. Next I’d carry the other cheeses on the pig board. It’s a board that hung all year in her kitchen, just below the cabinets on a hook. The board is only six inches in size. The center is a wooden circle. But the metal frame surrounding is all pig. I don’t know where she got it or why. I don’t know why it tickles me. But it does. It only came out on Thanksgiving and that was a special treat. Now it is in my kitchen. When Gramma Harriet died and we emptied her house, I took so much. I had to. It was hers and it was good. Nothing fancy about any of it. But I had to have it, all. The pig board, the fabric, the findings and thread, the Pyrex dishes, monkey pod bowls and plastic Thanksgiving table cloth are all mine now. They make me feel safe, prepared for anything, and loved. I knew it then to be true for me and it is true for me now. Just the simple things that others wanted to trash mean the world to me. I have to remember to use the pig board and Pyrex for The Blues Thanksgiving.

There were celery and carrot sticks to be put out on the buffet table too, but I wasn’t really into that. I was waiting for the toaster oven to “ding.” “Ding” meant done! The empanadas were done. I could smell them and knew they were coming. My old Yankee, New England Gramma, loved trying new things. In a magazine she saw a recipe for a sour cream and butter pastry that you fill with ham, green onions and green chilies. And for some reason she added this to the rotation of holiday foods. It’s tradition now. And it’s fabulous. I am making them this year. And like her, I make the dough one day and keep it cold and ready in the fridge. The next day I’ll do the innards. I have to get out the big hand crank meat grinder that I took from her house. Maybe the deli counter at my super market could grind it up? I’m not sure that I am up for it. I’ll figure it out.   A different day, I’ll roll out the dough and cut circles. If I break it up into days just like Gramma Harriet did, I’ll be alright. I’ll get it all done. Then I’ll rub water around the edge of each dough circle and put a spoon of the “guts” on top, fold it and seal it up. I will bake a few for me that day. I have to test them. And the smell is the best thing ever. That’s what I’ll do. As a child at Gramma Harriet’s Thanksgiving, I’d just wait for the “ding.” That was long enough. I always grabbed one before it had properly cooled.   Gramma Harriet let me steal one before they were ready for a plate or put out for others or anything. Grandmothers are the best. I’d take a big bite of flaky pastry, spicy chilies and smoky ham. The holy trinity of flavors in my face. Of course, I’d burn my entire mouth and get that thing called “cat’s tongue.” It’s such a weird feeling. I didn’t care. I had to have the empanadas. The rest would go out on the table and always be the first thing to go at the buffet.

Once the table was set, I’d need a snack, at least a cup of juice to cool down my overheating, empanada burned mouth. I’d head to the fridge to douse the fire. One year, there was lemonade. That sounded great. In the back of the top shelf of the fridge was a glass carafe. It was covered with bright yellow painted lemons and the word lemonade on it. I had to have it. Refreshing! I got a big glass out to fill with my sugary, lovely drink. We didn’t have drinks like this at home. If I was going to have a treat now, it was going to be BIG. I quietly poured a big glass. I didn’t ask if it was ok. They were in the living room right only a few feet away. But I didn’t want a “NO,” so I didn’t ask. I stood at the counter with the glass and the carafe and the fridge still wide open. I took a big, huge gulp. It went down smooth. It went right down fast. But it wasn’t lemonade; right color, very wrong taste. I took glass in hand and mouth with liquid still dribbling out the corner and gagging face into the living room and demanded to know what I had just imbibed. Gramma Harriet sat in her rocker and began to laugh, a big belly laugh. “Giblet water,” she said. I had a big swig of the water that she puts in the gravy. When she takes the “guts” out of the turkey, she boils them with an onion and celery on the stove to make a flavorful liquid for the gravy. Nothing goes to waste. And boy, was it flavorful. We giggled and guffawed all day over lemonade. For years afterwards, Gramma Harriet would make real lemonade in the carafe and remind me to check what I was drinking first for a possible surprise. Her eyes twinkled as she giggled and joked with me. And to this day, I store my giblet water in that lemonade carafe. It is the one time a year the carafe is used, for a very special, silly job. Where is that carafe? I have to find it for the gravy at The Blues Thanksgiving. I can’t remember where it is. This happens to me a lot since the stroke. My memory used to be so good. I think I’ll check the high shelf in the pantry, when I feel safe getting up and balancing on the step stool. Mornings are better for that.

At two o’clock, Cuzzin and her parents would arrive with the pumpkin pie and other goodies. We’d get the fire going, do Mad Libs for a bit, pick at the buffet and then eat the full meal. After all that preparation and waiting, we made quick work of the meal. Full bellies and setting sun, we’d toddle off for an early night. And every year, it was that good and that fulfilling. I knew it would be great, and it was. I knew I was safe and loved, and I was. And now I was charged with making that for my family. A very big responsibility for me this year in particular.

When I lived with her during college I really listened to her. I really watched her too. She took the big job of Thanksgiving meal on and did it all by herself. Weeks before the big day, she began shopping for the ingredients. Little by slow, hitting the sales and accumulating the great ingredients, when she had time and energy and money; everything came together. That’s what I have to do this year. I can’t go fast. I know I have to make lists and plan it well. I need some help. But this is my November work. I can do this. I have to. Jean Granny is coming. She will climb the stairs and represent the two best Grandmothers a girl ever had. I want her to think I did a good job. I want my Dad and Dorothy and the rest of my family to see that I can do something.

Channeling Gramma Harriet means I have to remember her ways. She laid out the parts of the menu and did them little by slow too. Although I never really think of her as slow. She had a big standup fridge in the basement and each day before the big day she would “tackle” (that was her word-formidible like her) a part of the feast. The potatoes would get peeled and boiled in the morning, early when she had the most energy. She had time and knew it would get done. And it did. And we loved it. I can do that too.

And at night, in the wee hours when I can be honest in the quiet November darkness, I own it. I am like Gramma Harriet a lot. I am doing the meal like she did, little by slow. As those around me live life, with jobs and family, I do a little each day for one big meal for them. I am letting go. I am letting go of what life promised me. I skipped that 40 or so years. My life has jumped to the end and I just don’t get those things for me. I am winding down. I am at the end of the life cycle, like she was. And what she did, I do. I am not even angry anymore. I am not even really scared. It is the truth that I can accept when I am alone. I am different than they are. The stroke took my life and I am on a different path. There is a relief in letting go of the hope for things to spring back to my old life. There is a pause in the despair and agony inside me since 4/4/03 at 10:10am. I stop fighting in the dark. In the wee hours, I can say it out loud. I can say it. My time is almost up. In the dark, at 2 am, I can speak truth.   When the daylight comes and when family is around, I get busy doing the work of the day. I am happy doing what I can to make a great day for them. I am proud that I am able. I am Rachel who is doing Thanksgiving. That is all they need to know.

November 10- Coumadin still at 6mg. Today I have Carole at 9 am down at my hospital. We are working on my slurring speech. I have lots of home exercises, like tongue clicks and cheek puffing and words to read over and over as clearly as I can. I hope she notices the work I have been doing. I don’t see a difference.

November 11- 10 mg of Coumadin for the rest of the week. INR is leveling out a bit. Before I go to the two therapies, I have to go get a turkey. Mom said the sales are good this week. She is going to go with me, in case need help carrying it. I don’t. Even with the ache, I carry my own bird! I go to her house and put it in her freezer. She has a big one down in her basement and I don’t have the room in mine. I go right from her house, down the road to my appointments. I have Heather for OT at 10:15 am and then Glenn for PT at 10:45 am. I am able to get my pick of scheduling times. I am a regular. That has some perks. Back at home, I can’t get much done until evening. I take the afternoon to rest and then get to work on Blues Thanksgiving Preparations. My neighbors come home from work and I am just getting up from my rest to start my work.

November 12- 10 mg of Coumadin. I have Carole for speech at 9 am. I am up at 5 am today. I take 3 long hot showers. If I wait 20 minutes after a shower, the water has time to get hot again.   I am trying to get my bones on the right side warm a bit. They hurt so much. I am hoping that all the steam helps my face relax a bit to do good work with Carole. It is a fine line between relaxed -ready to work- and relaxed- drooling. We’ll see.

November 13- I have PT at 9:00 am and OT at 9:45 am. I do so much better in the morning. Today I am energized from the sessions to get work done in the afternoon. I want to write a note to Farmer Ken. By “write” I mean type. I hope he can come to Thanksgiving. He works at my hospital at night and I hope he will be able to stop by for a bit.

November 14- I just have Carole today for speech at 9:00 am. I need it. I look and sound hideous. But at home, doing Blues Thanksgiving preparations, I don’t have to see or talk to anyone. And my babies love me anyway.

November 15 and 16- The weekend has errands to get supplies for the holiday. I have a good coupon for Michael’s to get blue things, just like Gramma Harriet. I also head to Church on Sunday. I am not up for work and I need to see people.

November 17- My bloodwork has my INR at an even 2.2. The rest of the week I take 15 mg of Coumadin. I see Carole at 9:00 am for speech. What a mess I am! I call My Doctor to make an appointment to set up a plan for work. And I have a form for her to fill out and she can fax it downtown. I have to document that how I am doing, constantly. I guess that when I stand drooling and lisping in front of them, that is not enough proof that I am not ready to go back to work.

November 18- Coumadin 15 mg. I go to Carole at 9:00 am and we do good work. I am so grateful for her. I am motivated to make the Apple Pie when I get home.

November 19- Coumadin 15 mg. I have OT at 11:15 and PT at noon. That is a bit late for me, but it’s with my favorite people so it’s all good. I have to take Lola to the vet for a 2 pm appointment. I’ve had her for a whole year. What an angel she is for me. The day is full with those appointments. I take time for extra cuddles and grooming with Lola. She hates the vet.

November 20- Coumadin 15 mg. Carole and I do good work at 9 am. I didn’t do my homework, but she doesn’t make me feel like crap about it. I am so grateful she understands. I don’t know how she does, but she does.

November 21- INR is up to 3.3 so I am down to 14 mg of Coumadin for a few days. Today is a busy day. I have OT at 10:30 am. She is really giving me good exercises and tips for making my handwriting better. I know we do good work. Why are my hands getting worse? They are weaker everyday. At 11:00 am I have PT and am bummed out about my hands. I hate to whine to Glenn. I know I am being a brat and dumping on him. I just can’t help it.

November 22 and 23- It is Lola’s birthday. I love my angel. I think she is 5 years old. Coumadin 14 mg per day. The invites are mailed and people are answering. I typed up an invite and printed it on Bright Blue paper. It was fun and much neater than my handwriting. I am so excited that Farmer Ken will come to The Blues Thanksgiving!

I do a big food shopping on Saturday. The big day is NEXT Thursday! At my supermarket I start in the produce section, work my way through the aisles, pass the meat counter, round the dairy section and land at the bakery. The whole way through my supermarket and even before I got here, I am thinking of what I have to ask at the bakery. I need help. I hope they will help me. My arms are so weak. They “poop out,” as Glenn from P.T. would say, so fast. The thought of cutting two loaves of bread into tiny cubes, kills me. I can’t face it. The bakery has the big bread cutting machines. Maybe if I asked nicely, maybe if someone I see every week is working, maybe if I say I HAD A STROKE AND NEED HELP, maybe they can run my loaves through the cutter two times and give me bags of cut up chunks of bread. Maybe. I can’t believe I am going to ask. I can’t believe I am going to tell them about the stroke. Gramma Harriet would have asked for the help. I don’t think she would be ashamed. She would chat with her friends at her market and they would help her. I have to be like her. I am so scared. My face is knotting up tight and my breathing is so wacky. I am getting light headed. This time, I know it is NOT another stroke coming. I know it is fear. (My next stroke isn’t coming evidently. But the FEAR is always with me.) In front of the bakery counter, I stop the wagon. I turn, take a deep breath, smile and open my mouth. I think I stumble and mumble, but the nice baker man, takes my loaves of bread and starts them in his machines, right away. There was no hesitation. He understood. He smiled. It wasn’t even a pitying smile. It was like he was happy to help me. I am shaking so badly as I wait. My palms get sweaty. The whole thing had to be done in a minute or so, but to me it was a trip to the moon and back. I triumphantly took my bread, checked out and headed home. Lola was in the car today. She comes in the car a lot since the weather got so cool. I feel safe with her. I am not alone with her. With the bags inside the car, I tell Lola all about my super market adventure and feat of great bravery. She wiggles her bum, wagging her back end and tail together and smiles big at her Momma. Me, I did it and she is happy for m.

I got help with the ham too. So it is time to make the empanadas. I open Gramma Harriet’s big metal recipe box. The recipe is founded in the H section for ham, not E for empanada. I found that out years ago.

The dough comes together so fast this year. I think Gramma Harriet is helping me be strong for this part of the preparations. I enjoy rolling the dough and cutting the circles. The innards are chilled in the fridge and I do a good job putting them together with the crust this year. I bag the precious treats up and pop em in the freezer unbaked. I’ll bake them early on Thanksgiving before the Turkey goes in. Why not? I’m up anyway.

November 24- Coumadin still at 14 mg. I got the Turkey out of Mom’s freezer today. There is room for it to thaw in my fridge. After I get the bird I have Carole at 9 am. And then I have on my list to try to find a bunch of things I need to have for Thursday! I know they are in my house…somewhere.

November 25- I get blood work early and the INR is up again. So I am back down to 13 mg. of Coumadin until after Thanksgiving. I have OT at 10:00 am and I think my hands are weaker again. Maybe they are not weaker altogether, but I can’t write more than a few words without losing strength. Gripping the pencil is not a good thing. Today I have PT right after OT. But today, I am not mean to Glenn. At 1 pm I have appointment with the counselor again. I know it is good to talk to someone. But I have no words to share.

November 26. Coumadin at 13 mg. It is the day before Thanksgiving and I still get to have my session with Carole. I am thankful. I will miss her until next week. My dad and Dorothy fly in from England today. That is a good thing. I haven’t seen my dad since April and my step-mom since last year. She hasn’t see me since the stroke. But she is so gentle. I am not worried about seeing her. Everything is ready for tomorrow. I can’t believe it.

November 27th is The Blues Thanksgiving. Coumadin 13 mg. It’s here. And everyone comes. I put on Gramma Harriet’s apron and do everything on my list. The day is actually a blur. We gather together. Someone makes a fire in the fireplace. It smells so good. Farmer Ken comes with goodies. He is happy to be with us. I can tell. That feels really good. Wessyfoo comes and it is wonderful to be together. Cuzzin is here. I love that. She helps so much with dishes. I am grateful. We eat the buffet items that we used to eat. I found the monkey pod bowls. I found the table cloth. Everyone is warm and full of hugs. I think the house likes having so many people in it. The turkey comes out perfect and all the food gets rave reviews. The day is a blur. All that preparation for the whole month has come to this. The sights and sounds and smell whirl around me. I do a good job. The hustle and bustle of the day is all consuming. I did a good job. Everyone sees that I am doing well. I do everything on my lists. I watch everything and everyone. I see their smiles. I hope I smile back. I am not sure.

November 27 through 30. Now what?


November 2016

I am Thankful for Thanksgiving in November. The whole month is a whirl of sights and sounds and smells and tastes; too much of everything. I love it. This is the ninth year that Tim and I are doing Thanksgiving together. I can’t believe it has been so many years already. And all such good years. I GET to have Thanksgiving at our house with MY family. Who knew?

We made a quadruple batch of empanadas this year. By we, I mean all three of us had a part in it this year, for real. I make the dough in about 5 minutes flat these days. Jason is in charge of the grinding of the innards. I don’t use Gramma Harriet’s hand crank grinder. We got the meat grinder attachment for my Kitchen Aid Mixer. Tim gives Jason piles of ham, lengths of green onions and tons of green chiles. He feeds them into the grinder and pushes them down with the Pusher Thingy. The next day we set about to constructing the empanada. It was supposed to be fun. And in the end it was. But in the middle it was the battle of the chefs with 3 strong minded, sensitive, independent workers clashing over the routine.   Each had a clear vision of the assembly line. Each had a different vision. We all got cranky but carried on. Jason and I took a mood adjusting break to snarf some left over Halloween candy. The sugar worked! The empanadas worked too. I am so proud to carry on the tradition. (And I am even happier that half of the empanadas remain in the freezer, uncooked to be eaten throughout the year. It’s the private reserve or chef’s stash or greedy Rachel goody.)

The turkey tradition continued too. My first Turkey in 1995 was all of 14 pounds. I remember thinking it was big. In the years with Tim, I’ve gotten a bit carried away. I own it. Each year I up the size a bit. I always cooked my turkey in the oval metal pan that Gramma Harriet used for her turkey. Each year it served one purpose. 364 days of dust was rinsed off her biggest pan and the bird was perfectly cooked. It was a perfect pan for me too. But since Tim, the pan is retired for roast chicken or ham at other times of the year. I had to find a bigger pan for the bigger bird.

Last year the turkey was so big that I split the carcass in half and Mom and I both made soups. It was that big. Historically, we cook the bird upstairs and then the next day give the carcass to Mom who makes turkey soup downstairs. We all eat it on Saturday. But last year, history changed with a big enough bird to make two broths out of it. This year could be no less. Jason and I prowled for the biggest bugger of a turkey we could find. I had a number in mind for the weight. And Jason agreed. We had to break the 25 pound mark. I don’t know why. Maybe we did that last year. I don’t remember. It doesn’t matter. This was the number Jason and I were fixed on! It had to be. And for no other reason than this light bulb whim, it was. This year’s bird weighed in at 26.3 proud pounds. Last year we numbered 13 around our table. And this year, it looked like like there’d be eight. So why did we need to get an even bigger turkey? Why ask why?

My Dad shed some light on this baffling, unanswered query of mine. It’s marvelous to me how the answers come if I just stand still long enough to catch them. As Jean Granny said, “Life is Crazy.”   My Dad flew in from England on the day before Thanksgiving. I had hoped he would and he did. As usual, we gathered in the kitchen when the Wessyfoo contingent arrived. We circled the oven and noshed on peanuts and olives and the traditional Red Pepper Jelly atop Cream Cheese, shmeared on a cracker. This is definite family tradition for the Grazing before Turkey Buffet. (I think the grazing turns to gorging with the bird and desserts that follow. But, in a good way.) My Cuzzin introduced this spicy, sweet and creamy appetizer, a decade or so ago. It is a v. good addition. Even though, she wasn’t here, her food was. That is a good thing indeed. We shmeared and yummed a toast to her! I added a peanut filled black olive to my toast. Of course!

As we mingled and munched in the kitchen, I checked on the big, bugger bird. All “Oohed and Aahed” at the smells coming from the oven and the size of the bird, once revealed. The salt pork was crisped up and had added its flavor. It had done its job. I snagged all but one piece off the bird and put it on a plate next to the oven. Cuzzin and I devour it every year. Tim, once introduced to this way-over-the-top delicacy, fell in love with the salty slabs of pig fat. (Just being honest. That’s what it is. I know it. I own it.)   Without the Cuzzin we had the lot to split. A once a year indulgence. (Don’t tell Dr. S… I doubt it’s on a heart healthy list of things I should eat! I can hear Gramma Harriet in my head. She had just the right words for this situation. “When I’m dead and gone, no one will know the difference.” It’s a great line she used when she’d over indulge her loved ones with treats. We’d politely say “no.” We’d try to turn down the extra spending money for a trip or impulse buy. But she’d insist. It was a little pleasure of hers and who were we to rob her of it. And we’d accept and be ever so grateful. I’m not sure she would have used this particular line to justify something so “deadly, deadly” (her words again) for stroke survivor grandaughter. But I’ll use it. And I’ll giggle at the memory.

With my mouth full of salt pork and a lull in the conversation as we all reveled in the vision of our glorious bird, my Dad told about his first bird. It was the first Thanksgiving my parents had each ever made.   My Dad was concerned that there be enough. He measured the inside of the oven and then took those dimensions to buy the turkey. My Dad found the biggest bird that would possibly fit inside that oven! That’s it! That sounds just like me! I laughed and a part of me made more sense than ever this year, hearing from him.

But wait. There’s more. He was still worried that the turkey wouldn’t suffice. He went and got a second smaller turkey and cooked it in a second stove. “Holy God,” as Jean Granny would say. That is something I’ve actually contemplated. But I never found a bird that would fit in my engagement ring-crock pot. No one ate the second turkey at that first thanksgiving of my Dad’s, long ago. Not a bit of skin was needed that day. But they had it. And as Cuzzin’s dad often said, “IT’ll come in handy if I never use it.”

There you have it. There are great things that can be learned at a family holiday. There are answers to the Great mysteries of life. (Note to self: Stand still more often and listen. The answers are in the moment.) I feel a part of the holidays today. With the start of November, I think back on all the Thanksgivings of my life. And since my stroke, I don’t want to be an outsider on my own life. I don’t have to be. I will be present for my life. And I will savor each simple moment within the abundant chaos of the indulgent holiday. I choose that now. I do it now consciously because I don’t want to feed isolation or despair in my life. Been there, so done that! I have to practice every single day. My default setting is isolation and self pity. I know that about me. My Stroke only magnified these base traits in me. Stroke didn’t give me these feelings. They were there all along. And I lived, if you can call it that, with low grade “ick,” most of my days before my stroke. My stroke hit and turned up the volume on despair, pain, isolation, depression and rage til it was all I heard. I couldn’t block it out. I couldn’t drown it out. It was me. It was in me and it was loud.

I believe that I could have gone my whole life seeing only blah, gray gloom within me. I could have followed high drama relationships and roller coaster adrenalin rushes, trying to get the high, high that would make me feel I was living life right. I could have. I did. True peace and joy eluded me. The vivid contrast of knowing what REAL agony is, is where my stroke brought me. I don’t take subtle clues or lessons. I needed a big hit on the head to teach me to live life right. When I survived the stroke by having it in my doctor’s office where I could get treatment right away and because I was so young and strong, I was given a gift. At the time it was not a gift. But now I know that this day I have is all I have and it is everything. We are not guaranteed a long life on this earth. Stroke survivors know that. And once we know it, we can’t NOT know it. And I can’t take it for granted or wait for the joy. I have it now. I have to enjoy it today.

I also know that this second chance at life given to me by my Stroke, is contingent on practicing the opposite of what my twisted little mind knows. I cannot indulge that grandiose future-mongering side of myself. I choose to make this day, way larger than life and full of love. I can do that. (The flip side of living my life this way is that I get seriously exhausted and overloaded. I hit the wall and need to slow down a bit. Forget hitting the wall. I crash through the wall and at the end of the trail of rubble beyond, I fall over. Note to self: one turkey is enough and you always have enough food at your holidays. )

The day is always full. And holidays are especially so. I used to do a theme for the holiday. It was a great way for me to focus all my time and energy on something good for others at a time when all I wanted was to crawl under a rock and die. Honestly, that was me. A theme helped me make a larger than life day. But I don’t need to do that today. That is not part of the tradition that Jason, Tim and I create. The theme of everyday is doing the next right thing for those we love. And that makes for a very full day. (Yikes, I realize that Jason and Tim have to live with this whirlwind, me. Their day is kind of set on this psychotic pace by virtue of living with me. Yowsa. It’s a lot. I am so grateful they are with me and stay with me. And most of the time seem reasonably happy too.)

We do always have an activity; something for everyone to do or make when they come. Last year Jason set up a bean bag toss in his room! One year we all wrote what we were grateful for on construction paper leaves or made hand turkeys. They were wonderful to have about the house. We had turkey hats galore once and took turns wearing them. Good pictures as keepsakes that year. Always something. This year was no exception. Our tradition of each one us saying what we are grateful for that day before we eat, is going strong. What a joyous practice. This year, all year we’ve been writing our “gratefuls” down on paper, at supper. We put the date on it and keep them in a wooden trunk, beautifully made by my brother-in-law. I saw the idea in a magazine last December. You save the slips of paper all year and then on New Year’s Eve, you read over your year and see how much goodness was in each and every day. We already SAID our “gratefuls” every day, so it was not much of a leap to write them down.

Well, last month, in one of my magazines there was the idea of having everyone write their “gratefuls” down on one piece of fancy paper, using the same color marker and then framing it. It was the natural progression and the perfect activity for us. I had a big frame I had bought with purpose unknown. “It would come in handy, if I never use it.” Uncle Herb’s motto was in my head when I bought it. Very handy now. The next step was getting the right kind of paper and perfect marker. We went to our local art store. I think it is the oldest art supply store in the country, or near enough. It is a local treasure. We got a big piece of cream colored paper and Jason picked Kelly green markers with two tips, fat and skinny. Tim hung the empty paper on the inside of our front door. Everyone was told when they arrived to add their heartfelt “gratefuls” when they could. And they did. Of course, it didn’t get done the way I had imagined. It didn’t even get finished that day. But it, like the day worked out just as it should. What a gift.

As the sun was setting, the Wessyfoo clan headed west. Bellies were full, overfull. I packed four brown bread muffins to have for breakfast the next day. They hadn’t the room to eat them with the bird and veg. I packed Pumpkin Pie with the sugar cookie crust. They hadn’t been able to fit it in either. I was grateful they had made room for the other desserts: Henry Sugarhouse Apple Pie, Pumpkin Spice Snowball Cookies and Harry Potter inspired Butter Beer Pie. They did well. But I had to make sure they didn’t miss the muffins or pie. Home it went with them.

If the picture made you drool, here are the recipes.

1st of 4 Thanksgiving desserts: Tried and True Apple Pie

Henry Sugarhouse Apple Pie

Crust:                                                                     Apple Insides:

1 2/3 cups King Arthur flour                             8 medium apples: peeled cored

1 TBSP. sugar                                                     and sliced

½ tsp. salt                                                         ½ cup each white and brown sugar

¼ tsp. cinnamon                                                   2 TBSP. real maple syrup

1 stick unsalted butter                                      ¼ tsp. salt         ¼ cup flour

Cold and cut into cubes                                 1 TBSP. vanilla           1+TBSP. cinnamon

2 TBSP. Crisco                                                     ½ tsp. nutmeg

3+ TBSP. ice cold water

Crust: Put flour, sugar, salt and cinnamon into a large mixing bowl and whisk together. Add butter and Crisco and stir with a fork until they are in pea sized bits with the dry ingredients. Add the water and briefly combine until a ball forms. Use your hands to make one disc of dough. Wrap, bag and put in the fridge overnight. Take out the dough while you make the apple innards. Cut the disc in half and roll into 2- 11 inch crusts. Place on the bottom of your pie plate with the edges overhanging.

Innards: Toss the prepared apples with all the innards ingredients making sure each slice of apple is well coated.

Pour the innards into the bottom crust. Place top crust atop and press edges together to seal. Make a steam vent in the center. Bake at 425 degrees for 15 minutes and then reduce heat to 350. Bake for another 50 minutes or until the apples are soft when forked. Cool as Long as you like before devouring.


2nd of 4 desserts: Pumpkin Pie with Vanilla Cookie Crust.

Crust: I used one tub of vanilla wafer cookies from Trader Joe’s. (Okay, I ate 5 cookies while I made the crust.) 6 Tablespoons of salted butter, melted. I put the cookies in a plastic bag and Tim banged and bashed and rolled a pin over them until they were fine crumbs. (My food processor is dead. This method is more fun anyways.) I put the crumbs in a bowl and added the melted butter, stirring and mixing until a crust sort of came together. Then I poured the lot into a 9 inch pie plate. I pressed the crumbs using my hand and the bottom of a glass into place. There was crust over the bottom and up the sides of the pie dish, as evenly as I could get them. Then I baked the crust at 350 degrees for 10-12 minutes to set the crust.

While that cooled, I make the filling.

-One 15 oz. can of pumpkin puree

-1 cup heavy cream

-2 large eggs beaten a little

-2/3 c cup firmly packed brown sugar

-1 TBSP. pumpkin pie spice

-1 TBSP. pure maple syrup

I kept the oven on 350 degrees. In a big bowl, I whisked together the pumpkin puree, cream, eggs, brown sugar, pumpkin pie spice and syrup. I poured the filling into the coolish cookie crust. Then I just baked it for 45-50 minutes until the filling was set according to the lightly wiggling the pie plate test. Cool and keep in the fridge.


3rd of 4 desserts: Butter Beer Pie that was supposed to be Chocolate Chiffon Pie for Tim. Last year, we decided to save the Mince Pies for the Christmas season. Tim requested chocolate cream pie. I made a test pie and he said that while it was great, he wanted something lighter for Thanksgiving. I googled around and found that what he was describing was a Chocolate Chiffon Pie. I made it. He loved it. Everyone loved it. That was the plan for Thanksgiving 2016 too. But then I saw a recipe inspired by the release of the New Harry Potter Film. I showed Jason and Tim as they are reading the books. I should say Tim is reading and Jason falls asleep after a few pages, every night for a year now. The Butter Beer Pie was Jason pick and bumped Tim’s pie from the roster for this year. Tim looked skeptical at the picture and description of the pie. He had never heard or imagined such a pie.   He thought it would be too sweet! (As if anything could be.) But it wasn’t. It was creamy brilliance. We’ll have it next year until the next idea bumps it!

Crust: I used ½ of my homemade crust detailed above in the Apple Pie Recipe. I cut the ball in half; rolled it out, put it in the pie pan. I weighted it down with my new-fangled device for this purpose and I baked the pie shell for 15 minutes as directed. When I opened the oven, the crust had shrunk to the size of a cookie. No good. I had used the other half of the tried and true crust to make a cinnamon roll to snack on with the family. A small portion of that crust had been rolled and cut to look like Harry Potter’s lightning scar. This baked safely and was put aside til serving.  I shed a few tears as I threw out the first pie crust. I revived with the smell of cinnamon roll baking. It happens every time I try to use my crust for a one crust pie and try to bake it before the filling goes in. With time ticking on the day before Thanksgiving, I sent Tim to the market to get a store bought crust. I know. It’s a bit of a cheek, but it worked, eventually. The box comes with two crusts. I took one crust out, put it in the pie plate and again laid on the weights. I assumed it was my crusts with the problem and that they alone shrunk. Not so. The store crust had the same end. No good. With Time further along and the one crust left, I got desperate and determined. This must work. Tim googled such baking disasters. Following some internet advice, I did not roll the crust. I used a smaller pie pan. I draped it over the pan with the edges way over the pan. I let it sit for 10 minutes and “rest” before I baked it, with the weights. And, much to my surprise and pleasure, it worked. At last. Fortunately, the eating the cinnamon roll had restored me to enough sanity to carry on with the filling of the pie.


In a small bowl, I combined butterscotch pudding mix with 1 ½ cups cold milk. I whisked to combine. Then I let it stand until thick. In a big bowl, with my hand mixer, I beat 2 cups of heavy cream until they were forming soft peaks. It took about 3 minutes. Then, I folded into the whipped cream, by hand the pudding and 1/3 cup of caramel sauce. I took a spoon and tasted it. Delish. I put this filling, minus a spoonful I gave Tim, into the Pie Shell. I smoothed it until it was a beautiful –high mounded pie. I put this into the fridge until after we had Thanksgiving supper. Then I beat 1 cup of heavy cream until it was whipped. I folded in ½ cup of marshmallow fluff and shmeared that over the pudding filling. Atop that, I set the lightning bolt of pastry and sprinkled gold sugar on the lot. The result was about 6 inches high and by far the hit of the desserts. Although Jason didn’t eat any of it that day… Nope. His request and the child ate cookies. The next day however, he did indulge and approved.

4th of 4 desserts. Made Thanksgiving Eve in case the above 3 aren’t enough…Pumpkin Spice Snowball Cookies.


1 cup unsalted butter                                 2 ¼ cups King Arthur Flour

1 ½ cups powdered sugar, divided               ½ tsp. salt

1 tsp. vanilla                                                 2 tsps. Pumpkin Pie Spice, divided

¾ cup chopped walnuts


  1. Preheat the oven to 375 degrees. Make sure the cookie sheets are lined with parchment paper.
  2. Mix butter and ½ cup powdered sugar and vanilla in a big bowl with hand mixer until well creamed.
  3. Add flour, salt, 1 tsp. pumpkin pie spice and mix until a dough forms.
  4. Add the nuts and mix.
  5. Scoop balls using a small scoop (about 2 Tablespoons each). Put on cookie sheets.
  6. Bake for 8-9 minutes until the bottom of the cookie is JUST a TOUCH brownish.
  7. Take them out and roll them right away in a bowl which has the remaining 1 cup of powdered sugar and 1 tsp + pumpkin pie spice mixed. Roll them until they are well coated. Roll them again if you like. With a quieter house and full heart, I puttered around the kitchen cleaning up. Jason was curled in a recliner watching TV, off and on. Tim was having coffee in the dining room with our last Thanksgiving feast friend. He had come for dessert and stayed for a good chat. Sounds of the mens carried to the kitchen. I love that our home is so full of love and life. The dishes were washed and leftovers were packed up. Tables and extra chairs were sorted. The linens were piled for laundry. I then set about to battle the carcass. I got all the meat off it and whacked the carcass in two. I might as well get my broth going. I pulled out the rest of the giblet juice from my fridge, cut up a couple of onions and carrots and got that to boil in the biggest pot I have. I added water to cover the bones I had and let her rip. I put some of the meat in a cubby for me and Tim and Jason to eat and saved some for our soup. The other half of meat went into a big cubby with the other half of the carcass. I brought that down to Mom so she’d be ready to make her broth the next day.     It was an early night for all three of us after the richness of the day. The sounds and smells of the broth simmering was comfort for the weary. The next day, we were up early because we always are. Jason and I have a Black Friday tradition. We don’t get up extra early for this day. But after breakfast, we are off. Tim stayed home to head to the basement with his brother-in-law, the maker of the trunk. The water main needed changing and today was the day. Jason and I headed to Joann Fabrics in Shrewsbury. Their Black Friday sale on Fleece stocks me up for blanket making for the holidays and beyond. The sale is stupendous and the haul each year is too. Jason gets to pick a fleece for his holiday blanket. Each year he gets a new blanket. (Each year the blanket gets bigger. He grows so fast.) Over the years he has picked fleece patterns of The Grinch, Santa on a John Deere Tractor, Batman, Pokémon and Teenage Mutant Ninja Turtles. I began by double the amount of fleece. I cut two rectangles and laid them together. Then I cut strips around the entire edge. All I had to do was knot the sides together and I had a warm, snuggly new blanket. Jason got his blanket the next day. He never waits til Christmas. But the ones for Wessyfoo with Cardinals or Woodland Critters, the ones for my Godmother, God daughter or Cuzzin wait and are wrapped up, and opened at Christmas. These blankets are much sought after under the tree. Their weight and size and comfort and style delight me and my family. It is so much fun to put hands and eyes on all the hundreds of patterns at the store. They are arranged by color on one wall and then by specialty pattern in smaller aisles. Jason and I take at least 3 trips around the store before heading to the cutting table. We load a wagon with the bolts we love. Sometimes we change them out three or four times before finding, “the one.” Sometimes, the first one is the winner.          Our first grabs of fleece at Joann Fabric secured Tim’s Christmas sports throws. I had my arms full. Jason went and got a cart and with that found his choice for the year. It was the cuddliest softest Star Wars fabric. But it was not fleece. We got it anyways. I found a new blueish-tealish fleece for Cuzzin’s blanket to match her bedroom. She had mailed me a picture of the carpet. The picture didn’t shed much light (Ha-Ha) on the color. I did my best. One particular fabric called to me on all 3 passes. That was the one I picked. Wessyfoo got a new fleece and then I picked one I just loved, for me or someone special. Unknown for now, but not for long.     Jason and I pop into one more store and then we are off to our friends for a cup of coffee and sword play. I get the coffee and Jason gets the sword play. The friends we made last year, the mother and son, and daughter too, have moved from our hood to out by the fabric store. They had hosted their first big holiday in their new home. A quiet day of rest was in order for them. Knowing they’d be there, we cheeked an invitation for a caffeine/play date after our shopping. What a treasured time! Elf work followed by time with friends, what a gift.
  8.     Back at home in the early afternoon with rainy gloomy for weather, but holiday cheer was in our hearts. Tim and his brother-in-law were still battling the water Main. A small job proved to be larger. They were steaming up and down the stairs checking taps and drains. Jason had a quick leftover lunch and then added his hands, and young legs, to theirs. I took the new lights and headed out to “frost” the shed. I knew it was only the day after Thanksgiving and not the time to go full force into the Christmas decorating. I knew that. But the shed was a small project and would get the season going. Our family logo is the Henry Sugarhouse and the shed at holidays turns into a mini version. Light up candy canes encircled the shed in the past, with icicles hanging down and a wreath on the window. It was right out of Hansel and Gretel. Yup, I’ll be the witch. The candy canes had been checked and given last rites. I bought color morphing snowflakes on stakes today at our one extra store. I figured this year, the shed would be a “sugar frosted” house. The crystally colored snowflakes, two white lighted big stars on the doors and white snowflake lights hung from the roof. The vision dancing in my mind, I set about to make it so. The cold drizzle on my back and 500 step assembly of the color morphing stakes proved to dampen my holiday cheer. But my stubborn streak took over and sweet victory was mine. The mens stubborn streak and talent reigned too. At day’s end we had water in the house, twinkling frosting on the shed, tired bodies, cheerful hearts and of course Thanksgiving turkey dinner take 2, hot on our plates.
  9.             The line for the cutting counter was not too bad this year. There is a bright red ticket dispenser at the end of the counter. You take a ticket and find a spot to wait. There are always people and their fabrics you can watch. I try to figure out what they are making. I love people watching. Jean Granny and I used to wait outside shops and watch people. From their faces, clothes, the hunch of their shoulders, the pace they were walking and the bags that they carried, stories would unfold. We’d imagine their “background,” watch their present and forecast their futures. Standing in line waiting for the fleece to be cut, is a wonderful opportunity for just such activity. There is time to spare; we might as well enjoy it. Jason and I don’t just watch, we start chatting with our fellow shoppers. This year Jason was matching the numbers before our ticket with the people waiting with us. He was quick to sort out the order and surmise how long it would be, based on the size of their load. The woman beside us admired all the sports fleece in our cart. She was there solely for one yard of cream colored flannel to finish a project. While waiting with us, she decided to double her order, and be ahead of the game for the next project. I wonder what project could be waiting for the cream flannel: a doll face, a curtain, a pillow, or part of a quilt. I wanted to ask, but her ticket was next and off she went. It is fun to imagine. It is so indulgent to be surrounded by and touching fabrics and findings of every material and color and texture. The hustle and bustle is my vision of Santa’s Workshop. For that hour, we become Santa’s Elves brought together at the beginning of our busy season. “It’s beginning to look a lot like Christmas,” we sing as we bound back to the car with our big bags of presents yet to be.
  10.     Last year I changed it up a bit. I saw a new way to make the blankets. You use only one layer of fleece. I bought a special rotary cutter tool. Instead of cutting the fleece it punches holes. Then I take any yarn and CROCHET an edge to the fleece blanket. It is amazing. Last year I got so much yarn given to me. It is sorted into twenty odd cubbies in the attic. I already had quite a stockpile. My stash is quite remarkable now. I was looking for ways to use the yarn and ways to save on the huge amount of fleece I used to make the blankets. The heft and cost was getting up there, even with the Black Friday sales. This crafty discovery opened a whole new world. If I didn’t cut back on the yardage, I could make double the number of blankets. But as I don’t have double the amount of time, I try to remain reasonable. Last year I did add seasonal recliner and kitchen chair throws into the mix. Each one is small and the patterns are fun. I have Stroke blue throws for May, Green polka dots for spring and Gingerbread people for Christmas in our kitchen. I made Tim a Red Sox throw as a last minute fleece impulse for Christmas. He used it all year
  11. All in the house enjoyed the fleece blankies. This summer, Jason said that Dad should have one for each of the Boston sports teams. I kept this morsel in mind for our excursion
  12. I let my broth simmer til midnight. When I got up then to feed Ciro a bit of food, I turned off the broth and set the pan in the back hall. In cold weather, that hall is endless cold storage. Tomorrow I’d be able to strain it and such and get my soup made.

My Dad and Jenny had forgotten to sign the grateful paper, in the hustle and bustle of family yum on Thanksgiving. So Jason and I went out to Wessyfoo on Saturday after for a blueberry pancake and bacon breakus and a walk in the woods with Granddad. We brought the paper with the empty spaces and Kelly green markers with us. After we ate all the pancakes and cleared all the dishes, I laid the paper on the table to be completed. My Dad signed quickly. My aunt hesitated with marker in hand. “What do I write?” she asked as dishes rattled in the kitchen sink, as Jason and Granddad broke kindling and laid a fire in the wood stove, and as I looked out the window to the shed and hydrangea and birds at the feeders. I told her just to think of our day together and write down whatever she was grateful for.

The answer came. “I am grateful for Jean. For this.” She raised her arms to the home and family around her. Tears and love filled her eyes and face. “She didn’t have anything in her background. Nothing. How did she know about Martha Graham? How could she know and share modern dance with me?” My Dad added treasures that Jean Granny had no reason to know or aspire to, and yet she did. “Jean made all of this. It came from her. She gave us everything…each other and this haven.” With those words said, there was nothing to do but pull up a chair for my aunt and let her write. And she did. And it was done, perfectly complete, so simple and treasured forever. Just like life.




October 2003 & 2016

October Coffeetawk Topic: (Never be ashamed of a scar. It simply means that you were stronger than whatever tried to hurt you.)


ROCK ON, I say! I embrace proof of my strength, reminders to me and everyone else that I am a survivor! My stroke left scars to be sure. But it wasn’t out to hurt me. Stroke was doing what stroke does. Life does what it does. Life is not out to get me either. I am simply not that important.   Feeling ashamed of my scars. Nope. I’m kinda beyond that now, I hope. I think. Most days anyway. (I admit to a once in a while bout of shame when I have behaved badly. I own it.) When I was young, I lived under a shadow of shame, humiliation and embarrassment for whatever colossal sins I believed I had committed. I vacillated between the cocky egomania of being a free and fresh young thing, and a less than, bottom-of-your-barnyard-boot-scraping, wasting your time, never living up to your ideal, unworthy nerd-turd hiding in the dark stairwell. I wasn’t then and am even less so now, the center of the universe. The sun never rises and falls on me. (What a relief!) I couldn’t possibly have earned the level of shame I felt. I amplified and exaggerated everything. Reality? What was that? I felt responsible for things way beyond a child’s control. And I felt ashamed of myself. The emotional whiplash sustained from ricocheting between these two extremes, certainly scarred my spirit. Forget what life did to me, these were scars all of my own making. And they ran deep.

I’m going to pull a teacher move right now to help me get to the heart of this quote.   I’m looking up 3 of the words from the quote. They are not difficult words: ashamed, hurt and scar. I have used them a million times and feel confident I could give an A+ working definition of each. I asked my kids today and sure enough, they all had terrific definitions of these three words. But what these 3 little words mean to me, has changed so much since my stroke. The meaning and thinking about this quote as a whole, strikes this survivor to the quick. My scars and I are certainly on a journey. That I know. I hope this means that I have changed, as the words cannot. Maybe…

  1. Ashamed: embarrassed or guilty because of one’s actions, characteristics, or associations.

“You should be ashamed of yourself”

Synonyms: sorry, shamefaced, abashed, sheepish, guilty, contrite, remorseful, repentant, penitent, regretful, rueful, apologetic

Check. Check. Check. Check. Check.   I continuously felt sorry for things I had done, remorseful for personality and physical traits that were part of my basic make-up, and apologetic for people, places and things I associated with, that I perceived to be wrong. I had the wrong friends or no friends at times. It was my fault. I was unlikable. I am so sorry that I wasn’t better in school or sports or applying make-up to my pimply, plump face. These are some of the stories that I told myself. I chalked these tapes up to teen-age angst or young adult jitters or living in a difficult period of history. Ugh.

With my stroke, I lived in new dungeons of shame. I was ashamed first off, that I had a stroke. It was an old person’s disease. I was young. What had I done wrong? Why me? It must be payback for something.   I was ashamed of me and my droopy face, drooling mouth, broken swallow, stunted gait, slurred speech, inability to work, status as patient in a hospital and then a nursing home. It took years to not feel ashamed at the changes in myself. It took practice and patience to grow to embrace those changes. Even then, I was ashamed of the scar that the feeding tube had left on my belly. Curious. I had survived. I was happy with the gift of being alive just for today. I was good…but not about that scar.



cause physical pain or injury to.

“Ow! You’re hurting me!”

synonyms:       injure, wound, damage, abuse, disable, incapacitate, maim, mutilate, wrench

Check. Check. Check. Check. Check I systematically felt injured, damaged and abused by life. So many of the everyday pains of growing and living, I took to heart. My reaction to so much of life was to feel hurt by the inevitable and natural changes that occurred. I was a victim when no one had attacked.

I had a recurring dream as a child. On a regular basis it would come. The story of the dream was: I was falling down a well. I knew it was a long way down. It took a long time to fall to the bottom. Every time I hit the bottom, I died. But I wasn’t scared to die. In the dream, I would be reborn upon impact into a different time and place. Life would be some fairy tale paradise, by virtue of rebirth and erasing the old me. There was no thought in the dream that I had the power to make me and my life more joyful. I had no power. I was a pawn being played by a powerful being. Changing the story of me, was only possible through my own death. The dream repeated for over a decade. It ended in high school, when I pretty much stopped dreaming.

In college, I made a decision on day one to recreate my life and start over. I chose happiness. With this practice and mindset, I realized how much I could love my life, and the dreams changed for four whole years. But before college, and again after graduation it was sad and painful. I had written a story in my head of how life SHOULD be. And when Life didn’t go according to the script, I was hurt. So I was hurt practically all the time. After college, the strength of the story that I should be married and have a family and a summer house and be happy, Damn It, was deep rooted. This inflexible version of me, was thrilled with BIG things in life, but missed the joy in the simple sunrise or steaming cup of tea. The story of Rachel trapped in a powerless existence returned.

The definition above says that a synonym of hurt, is disable. In my mind, I read that being disabled is a way of being hurt. And I think of the quote and translate; I am stronger than what disabled me. I am stronger than stroke. Hmmm. It wasn’t until my stroke that I understood how great my Ability had always been. I experienced Disability for the first time. My stroke damaged, incapacitated and HURT me in ways that I never knew possible; physical, spiritual and emotional.   So much of my body was injured. But as I have said, there was little pain early on. There was deathly silence, within and without. My body was silent. My spirit was abused and traumatized by my stroke, to be sure. And it was not silent. I ran the gammit of emotions from suicidal sorrow to homicidal rage and resentment. My level of hurt that spiritual pain was off the hook.

It was unbearable emotional and spiritual pain, for years after my stroke.   There was no going beyond the hurt. I was stuck in the hurt. The inflexible definitions of life I had before stroke, were shattered. I had no idea how or even that I could live differently. I desperately needed a process, a guide for living and healing up and out of the embarrassment, hurt and scarring inside and out from stroke. I didn’t know at the time, but I was going through the 5 stages of grieving. Grieving is suffering pain and hurt. For me the process of recovery, even the possibility of living without hurt is worth examination of this model. These stages are what I went through with my stroke. They are helpful to me when I get stuck on things like, why the scar from the feeding tube bugged me for so long.

I quote Wikipedia’s article on Kubler-Ross’ stages of grieving.

“The stages, popularly known by the acronym DABDA, include:

Denial – The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.

Anger – When the individual recognizes that denial cannot continue, they become frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.

Bargaining – The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise.

Depression – “I’m so sad, why bother with anything?”; “I’m going to die soon, so what’s the point?”; “I miss my loved one, why go on?”

During the fourth stage, the individual despairs at the recognition of their mortality. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.

Acceptance – “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”

In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

Kübler-Ross later expanded her model to include any form of personal loss, such as the death of a loved one, the loss of a job or income, major rejection, the end of a relationship or divorce, drug addiction, incarceration, the onset of a disease or chronic illness, an infertility diagnosis, and even minor losses.”

I went through these stages, in this order, mostly. Stroke physically depressed and silenced many systems in my body. That depression was present in varying degrees since the onset of my stroke. The recognition of my mortality was always terrorizing me, just below the surface.

If I relate the stages of grieving to my hurt, then I have hope. It means that I can go through a process. I can do something, feel better and learn to accept reality. When I am accepting of me as me and life as life, I don’t have to hurt any more. There is room for joy if I deal with the hurt. I have grieved the loss of the Rachel before my stroke. I had to grieve it. It was the biggest loss in my life. I lost me. I have felt that hurt and moved to acceptance. Now I am free to celebrate what I have in life, which is the very best.

Do I hurt? Yup. This stroke survivor lives with pain on a daily basis. Most of us do. But I don’t suffer and my heart doesn’t hurt from my stroke now. I treat my pain on a daily basis. The jaw tightness and throbbing pain really, really, really hurts right now. The tightness wraps around my head like steel bands, tightening in a vice. The congestion is continuous. Breathing is laborious. And sleep? Forget about it.

The fall is turning to winter chill and the cold pain is settling into my right side. It, I mean I ache and it really twinges, jabs, and all around hurts.

I could cry right now as write these words. But I am not going to cry and I am not going to focus on the pain. It is not what I do. (only because I practice every single day.) I’ve heard, “Getting hurt is inevitable, suffering is optional.” I take option A. I take care of myself and focus on the love in my life. There is so much to love in life. I am happy and I don’t consider myself hurt now.

The flip side of the agony I felt in the early years post stroke, was a new clarity about how healthy and whole and able I had been, had always really been. The joy of the simplest things in life had always been mine for the taking but I didn’t see that. Now that is my choice. The day is good when I have a steaming hot cup of tea to warm me. I am happy with that simple gift. It is enough. (It is more than enough.) For me, when I am living life on life’s terms, I am happy. My needs are simple and they are met. My heart is full of love and I am good with that. Stroke changed the reality of me. Of course it did! Who could be unaffected by that level of hurt? Who could sustain life in that level of suffering? Why would I want to? I don’t.

When I could accept the truth, I learned a lesson in embarrassment; at the time I had wasted, the gifts I had squandered, the sunrises that I never celebrated. I think that is why I cherish the little things since my stroke. They are the big things in life. They are not guaranteed for decades to come. I know that. Stroke teaches me that. I have countless gifts today and enjoy them, today. And in today, I am happy. BEEN there, DONE with the HURT. I lived there for so many years and for what? I can choose to be happy for what I have, which is everything. Stroke is the severe task-master teacher I needed to learn to live life right. Some heads are harder to get through to than others. I didn’t understand subtle or gentle lessons. It took a Stroke.   So I am grateful I survived my stroke. I am grateful for my stroke. Stroke teaches me that if I love what I have, I am happy.


a mark left on the skin or within body tissue where a wound, burn, or sore has not healed completely and fibrous connective tissue has developed.

“a faint scar ran the length of his left cheek”

synonyms:       cicatrix, mark, blemish, disfigurement, discoloration, defacement; 

CHECK. I didn’t have scars on the outside as a kid. My best friend Jordy, had enough for both of us. We were always together. I remember one time, I had done something bad and was sent to my room. Jordy somehow knew and appeared outside my bedroom window, calling to me and pinging my window with stones. I remember looking down at his red cheeks and never neat head of hair. The fiery eyes were looking up at me. He was there to help and had brought a rope. He said he would throw it up and I could tie it to something. Then I could climb down and we’d be free. We didn’t get far into the plan. But he got forever into my heart. Jordy loved me and he was there to save me. (I spent decades after waiting to be saved from myself.) Jordy was forever climbing tall trees, body surfing in the sand pit, and sliding down a three story banister led to regular bloody messes. He was always riding his bike on our gravel road too. And we were always going off to the doctor to get the wounds cleaned out and stitched up. I went with him, for moral support or for the lollipop from the nurse. The scabs barely had a chance to heal when a fresh gash would join the ranks. Scars and scabs are what I remember, and a gold flashing flint in the center of his eyes that mesmerized me and kept me close. He lived life hard. There was fire and rage in his gut, over what I was never quite sure. The flames didn’t scare me. I knew I wasn’t the target of the rage.   But I remember being scared for him, always. He did everything and anything on full tilt. I loved and admired him for that. I envied his passion. For as long as I have memory, Jordy had a scar at the outer corner of each eye, as if a bit of the flint in his eyes were breaking free. I remember that.

Jordy burnt out his candle young. That is the story I have always told myself since he died at age 17. It was a tragic accident on his bike. He used up all his life on this earth in just 17 years. There was no more for him to do here. His energy was so powerful and I spent years waiting for him to rescue me from my scrapes and free me from my punishments. As impossible as that sounds, he did rescue me in a way. Jordy knew Rachel and he loved her. He loved me. And knowing that saved me time and again. For all the years, his is the face I see whenever the word “scar” comes up, the runaway flint from the corner of his eyes. I hope he is resting, not racing now.   His spirit is what I call for when I am tired or disheartened. His passion comes to me and demands that I live life to the fullest. When I am scared he sends his love. His passion tells me to fight when I am weak, to play when I am lazy and love while I have time. I have always been driven to keep going, for him because he had enough drive for his life and mine. I get to do all things that he never got to. I have the gift of growing older, that he never had. Jordy is alive in my heart, fueling me to make the most of every blessed day that I get to be a wife and a mom. His spirit makes me a better teacher, for he is always a child in my mind. In my kids, I see his fire and I want to reach their hearts and heal their pain. (And yes, I want to prevent some scars.) Jordy is with me for my days.

In contrast to Jordy, the only scars I had as a child were internal ones. Life had happened. I didn’t deal well. And so I internalized a spiritual scar; a black mark on my soul so to speak. I felt scarred because my parents got divorced. I worried that I had a broken home. What I really had, was a chance to fall in love with a second hometown when my mom moved to Worcester.   I had the chance to spend summers in England on a narrow boat with my Dad and winters with him and my Jean Granny, Aunt and Uncle in Wessyfoo. I had the chance to meet and love a step-mum who showed me the kind of wife and mom I wanted to be. I had the ultimate gift of seeing both my parents find lives that make them happy and able to share their amazing talents. I got to see my parents happy and fulfilled. Those gifts were as much the reality as my sullen, “poor me” whine. But for so long all I saw was scars.

After my stroke, I had a real “big girl” scar. The round scar on my belly, about the size of a nickel from the feeding tube, bothered me for years. I wasn’t proud of it as a mark meant I had my swallow back and the feeding tube could come out. I wasn’t proud of being strong and beating my stroke.   I was ashamed of the discoloration in the center of the scar. I was disfigured by the scar.

I hated the scar on me. It was a constant real reminder that I had a stroke. I wanted to deny the stroke. But there was no denying that scar. I was angry and hadn’t accepted the way stroke snuck in and caught me off guard. In that second of my stroke, I was vulnerable and mortal and totally insignificant. I felt powerless. I hadn’t accepted the reality of life on life’s terms as a gift of my stroke. I wasn’t there yet.

But there was healing going on the with the inner scars in a way that would lead me to that acceptance. Tattoos were that way. Yup. This survivor gets some healing through ink. I had gotten my first tattoo when I was 28 years old. My fab Cape Cod Cuzzin was getting inked at the time.   We would talk about the realities of being tattooed. Ink was for life. So you had to find a place on your body that could be easily hidden, if needed for professional reasons, and would never sag. The tattoo had to be meaningful and no words! These were our conditions. Absolutely sensible at the time.

I loved my Cuzzin’s pride and self assurance from her tattoos. Her smile was bigger and there was a twinkle in her eye.   I wanted that feeling. And they were pretty. I wanted to be pretty. So I did what she did. Tattoos were still illegal in Massachusetts, so I went to Providence. In Peterson’s Guide to Wildflowers, there was the drawing of the romantic Forget-Me-Not. I wanted that wistful, wild essence for myself. I took that picture to the artist and within an hour, the round blue flower with the yellow centers grew out of the side of my right foot. I admit, it hurt like hell from the second he put the needle to my skin. But at that second, some ink was laid down, forever. If I stopped then, I remember thinking, I would have a scar of ink, unfinished work, and major embarrassment over not completing the tattoo. So I stuck it out. It hurt less and less each minute that went by. I thought that maybe my foot was going numb and my mind was getting stronger. I wanted the result. I wanted the pride and pretty picture. I got it. And it did help me then to feel a little bit prettier and stronger.

Before I could dream up and plan for a second tattoo, along came my stroke and it took over. So many scars, inside and out came from my stroke. I could not imagine feeling pretty or strong. I have previously referred to the darkest days as those when I was Jabba the Hutt: nothing pretty about this image. The character is practically a diseased scar, animated and brought to life. Nothing pretty there. No thought of healing. I never had the idea to adorn myself or celebrate life. Not then. I was not in the practice of taking small steps forward, living life simply, working really hard on things that SHOULD be easy and accepting help to do it. Stroke survival demands these skills or else… or else you can’t heal. I fought it tooth and nail for so long. I did work really hard, really, really hard. I did accept help, a lot of great help. And that cooperation fed the beginnings of my journey to the life I love now. Once I was able to take small steps forward, instead of attempting leaps forward and then running back in terror and shame, life got better. Once I began to live life simply and appreciate the journey, I got better.

When I started really moving down the path of acceptance and living life on life’s terms, my Cuzzin reminded me of the tattoos. I needed something pretty on me. Something pretty and strong. I was making peace with my new life path and I needed a tattoo that reflected the journey. My second tattoo would go above my heart. That location could be concealed when I was teaching and on someone with my build, it was never going to sag. My mom had got me a necklace with small, silver, scallop shell on it. She told me that the scallop was the symbol of pilgrims, on their journey. That was me. I designed a scallop set in the curl of an ocean wave. Perfect. The shell alone, was just floating there. The wave was the anchor: shell for the pilgrim, wave for the strength. Cuzzin found a studio of female tattoo artists. Perfect again. I wanted the experience to match the spirit of the ink. I needed to be reminded and embrace that I was a young, vibrant woman. For so long I had been the sick sexless lump.

It was October of 2006 and Lola and I were visiting her, enjoying ocean and sand and family. Cuzzin, her friend and I went together on a Friday night to downtown Falmouth. We all got tattooed that night, together. As the ink went in, I told my story. The artist and family and women in the room smiled at me. They praised my fire and strength and what I had endured. I felt so good. I remember being proud of myself for being a stroke survivor. I remember being happy with those women. I remember I went from sick, pitiful, stroke victim to proud, beautiful survivor that night.

On January 21st 2009, I got my biggest scar, ever! I didn’t even list it as one of my scars until a couple of months ago. I was talking with two friends of mine. Both of these men have lots and lots of ink. I am always curious about the stories behind the tattoo. I don’t go up to random folks and ask. But with my friends, I do. One said that several years ago, he had heart surgery. And afterwards, he had asked his tattoo artist to turn his big chest scar into a zipper tattoo. It couldn’t be done. I knew that too. They won’t do it. I forget why. Doesn’t matter. His tattoos showed his love of music and rhythm. They fit his personality.

I said how I had been getting tattoos to help me heal scars. My other friend laughed and said if he did that, there wouldn’t be a spot on him without ink. He had scars from all kinds of fights and scuffles. Life had left its’ mark on him. Much of the ink I could see showed love of his God and homeland. His ink matches his spirit too. When he talked about not having anything left if he tattooed all scars, I got to thinking. And I realized that I had a very big scar from where Jason was born. He was a C-section baby. No doctor would have this stroke survivor push and risk another stroke. So I have a big scar that I never think about. When I got that scar, I also got Jason. Tim, Jason and I became a family. I got so much FROM that scar and never had a negative association. When I think of that time in my life, my thoughts are of Jason and Tim, not myself. I got to be a Mom because of that scar. I guess I am kind of grateful for that scar and always have been. So that scar didn’t go on the list. Now I realize there are scars that make us, at least me, happy from the get go. Sometimes there is no hurt connected to the wound that leaves a mark. For me, hurt and shame were the requirements for a scar to make the list. In that recent chat with my inked friends, I learned something new about me and how I work. That is so cool.

It was all about Jason for several years. I had this life I never thought possible, a husband and child. They were here. And they were everything, especially Jason. Babies are everything and then some. I was blessed. I had decades of life that were all about me. So I didn’t begrudge it being all about him. There is something that I’ve said about a million times: “No child asks to be here. When they arrive, we owe them the best.” I think it’s one of my truths. (Ya know, things you totally live by, could be a bumper sticker, and you are not always aware of!) I know that Tim and I both did the best we could. I know that our ability was much greater when we had Jason, than it had been earlier in our lives. So tattoos were definitely on the back burner again. The immediacy and total absorption of JASON were so worth it. When you get what you always wanted, better enjoy it. Stroke taught me that. What a gift.

Good friends have taught me another great thing. I am learning that when I am truly ready to face my wounds and hurts, I can and will find healing. I do not have to bear the load forever. I don’t have to push the healing. I can’t be ready and willing, on demand to face demons from my past or hardships that I have endured. Ok, Rachel. Enough pussy-footing around. There is a big truth about me that I haven’t said.

  1. Here is the truth. I believe in God. (I am not sure I did, for a long long time. After my stroke I found that I did believe because I hated God. I hated God for not killing me with the stroke. I hated God because I was still alive but was so different. I screamed at God who would do this to me. One day in my journey, the question went from “why me?” to “Why not me?” And “Why did I have my stroke where I would get such FAST great lifesaving care? And what was I meant to do with this precious life I had been gifted?” This change of thinking changed everything for me. And I did not make this change happen. I made space in me for this change to move in. If I did not do this, then something greater than me had done it. And I was the better for it. So that was it. I called it God and moved on with living.) So There, I said it. It’s not a complicated thing for me. Life is cuckoo. My God is love. I live better when I rely on that. That’s it.

My journey before, during and after my stroke shows me that there is something bigger than me at work which supports, inspires and connects me to Love. My job in life is to follow the Love. (Sugar is love, right? So baking is following the Love, Right?) I do the next right thing. That’s it. Over the years, this simple practice has made me happy and content. I have a relationship with my Goddog where I don’t have to be the leader. Stroke has taught me I am not running the show. I am just not that important. What a relief to know I never had all that power to begin with. I can be a good worker today. My work is simple. I can do the next loving thing to help others. Even I can figure out what that is. It’s simple and It works for me. Ok?

Anyway, what I have found is that my God doesn’t bring stuff to me until I am ready to handle it. Practically speaking, that means that whatever happens to me today, I will be ok! I gotta practice this faithful and accepting version of Rachel, everyday. I blame the stroke for killing brain cells. I seem to need a daily practice and reminders that I am not in charge and that is a good thing. I wake up and with my first cup of coffee, standing at the kitchen counter, looking out the window for first light and morning birds, I ask the same question; what am I supposed to do today? Who can I help? I ask and get answers. Sure enough, by tea time, I am thinking I got answers for everybody on every topic imaginable. And so I have, I restart my day. I tell my kids that. I restart my day whenever I need to. My Buddhist Reiki Master Nancy used to tell me that she allowed herself 5 fu**ups a day, before she’d get upset with herself. She was human and needed to remind herself to be gentle.

Every day, whatever happens, I will find some way to handle it. And almost always I get lots and lots and lots of help from my friends. Didn’t the Beatles come up with that idea? https://www.youtube.com/watch?v=W-uTocAlIyw Who can argue with that? Not me. When hurt inside me, comes up and wants to come out, I freak. And pretty soon after, I remember that I will be able to deal with what ever it is. I remember it is just me, making peace with me and that if I clear out the old crap, there will be room for more life. I love that. So I have to practice and pray and listen and talk to find out what is going on with Rachel. And then I have to practice and pray and listen and talk and do the work to be healthier. It hurts. I hurt. I know it is growing pains and I take comfort in the image of the Grinch at the end where he cries to his Goddog Max, “I’m feeling” as he is writhing on the ground with his heart growing 3x the size in one day. His Goddog is there for him. Mine is there for me. And I am always the better for walking through the hurt.

The third tattoo was all about the wait. I was happily living on life’s terms with my family, that I got because of who I became after my stroke. I knew that. But on the inside, I was waiting. I was waiting for me to be ready to deal with one of my Stroke Demons. This time it was the external scar, on my belly from the PEG tube. I felt ugly because of this scar.   It is not like I was in the habit of baring my belly for anyone to see. My days of the two piece bathing suit were passed, stroke scar or not. It wasn’t the size or shape or placement of that scar.

I think I hated it, was ashamed of it and saw it as disfiguring, because of fear. Yup, that sounds right. And that fear which comes out in me as pain, was so great, it took years to get ready to face it. My Buddhist Reiki Master Nancy had taught me, that if I really touch the pain, it will disappear. If I am ready and I really face it, in that instant it will lose all its power. And I believed her. I had seen it and knew it was true. But I hadn’t been ready for that face-to-gut encounter. I was terrified of what that scar represented to me; total and complete powerlessness, my mortality.

Stroke came and took my swallow without warning. For me, that took my humanity. I couldn’t do the basest human function, swallowing my own spit. I couldn’t be a part of the basic family routine, sharing a meal. One second I could and the next I couldn’t. One second I was a young teacher of children. The next second the tables turned on me. I was the student of hospital, ER and nursing home routines, the lifesaving suction machine, fluid IV drip, feeding tube and pump, DPNS therapy, medication scheduling, and countless other new things I had to learn to survive. One moment I was running the show and the next, I was a victim. Once I was the invincible, immortal young fool. The next moment I was near death (my own death) , a crone without the wisdom and grace of years of life and strife.   I was at the mercy of modern medicine and whim of the location of this STROKE, to survive. Once I was me and then, who was I?   The truth of dying had always been there. We know that is the reality of our existence. I had heard about death my whole life. I had lost people that I loved. Gramma Harriet had died and I had been ok. This was different. I wasn’t ready. I hadn’t done the things that we are “supposed” to do, yet. I wasn’t married. I had no children. I hadn’t really made anything yet. I hadn’t gotten up to my prime yet. Isn’t the prime time for a woman, when she is in her forties? I wasn’t in my Golden Years where you accepted that you had lived life, were winding down and would decline until you die. You would have made something of your life and people would remember you, the way I remembered Gramma Harriet. These were the stories I believed about life. And I hadn’t arrived at the acceptable end of life. I was 30 years and I wasn’t memorable.

At 10:10am on April 4th, 2003, my stroke erased those stories, forever. I was going to die. Life was not measured by my standards and I wasn’t following the socially appropriate story. It was going to happen whenever my time was up, and that wasn’t going to be my call. The sequence of life wasn’t in my time or my design. I wasn’t guaranteed time to do things. My reaction was fear, panic, and depression. I couldn’t handle the not knowing. I had little peace.

My second tattoo of the scallop shell set in the wave, was a step on the road to peace and acceptance of reality. It was a sign for me that I was living life on life’s terms. The daily practice of this brought me to a time in 2012 where I was ready to really touch the pain and face that Stroke Demon. I was ready for it to go away and leave me. And the way I did it was through my third tattoo.

I went down to stay with my Cape Cod Cuzzin again. Only this time, I went solo. I went away for a night, on a sort of retreat. My Cuzzin, the ocean and the ink were the spiritual medicine I craved. The air was cold, and my Cuzzin’s kale and linguisa soup was hot and spicy. She is one of those cooks that food wants to come home with. Ingredients end up in their yummiest form and they know it. I know it. I don’t know what she does in the kitchen, but the results are magical and healing. Something absolutely delicious is always there when I come to visit. This visit was no exception. The studio with the female artists in Falmouth had closed in the six years since my last tattoo. Cuzzin had a found a new studio in Hyannis.   I had never been away from Jason, who was now 2 and a half. I never felt the need. But I needed to make peace with the PEG tube scar. I needed to smile when I looked at it or talked about it. I wanted other folks to smile at it too. How do you get others to smile about stroke? For me, the punchline of that joke centered on the scar. The tattoo would center around the scar. The scar was to feed me so I wanted a food tattoo. If life is sweet, then the food item had to be a sweet treat. I picked the classic New England icon of the chocolate chip cookie. The new studio was called Spilt Milk. And what goes better with milk, than a chocolate chip cookie? Yes, I asked. And I was the first cookie tattoo they ever did, even with a name like that. I was unique. Once I found out that the cookie couldn’t be tattooed onto the actual scar, the artist helped me with the next step. My tattoo would be a cookie with a bit taken out of it. The bite would be the scar. We would have crumbs escaping from the bite. Fabulous. And if I ever needed the feeding tube again, the doctors would know right where to put it, the cookie marks the spot.


When I saw the cookie whimsically set around the scar, I smiled. That was all I needed. See, sugar really does make me happy. It really has healing powers. Equally significant is when I showed the tattoo and spoke the words that IF I needed the feeding tube again, the cookie showed the way, I had spoken the truth of my own powerlessness and mortality. I had made it funny and sweet. But I accepted it. The hurt and the scar are gone. Baked goodies and a sweet smile are there in its’ place.


My 4th, and so far last, helped heal another internal scar. (Plus it satisfied my craving. I am totally hooked on ink. I own it.) I survived a brain stem stroke, thanks the FAST help I got, great medical care and a dash of my own stubborn grit, I hope. I thrive because of the lessons my stroke teaches me about how to live life on life’s terms, not Rachel’s. The location of my stroke in my brain was the source of this scar. The brain stem controls all kinds of automatic human functions like breathing and swallowing and such. Pretty important stuff. It is located at the base of the brain, top of the spinal stuff. On the outside, if you put your hand on the back of your neck and find the hairline, deep under there is your brain stem. The whiplash injury from a hit and run car accident years before contributed to my stroke. That snapping back and forth like a rag doll action is not so good for ya.

After my stroke, the doctors made it clear that activities like amusement part rides were out of the question. I cried for days. NOT!!!! I was not a fan before my stroke. This was no loss to me. They said it was not recommended that I have chiropractic manipulation on my neck again. I had been going regularly to a chiropractor since the whiplash injury. It had helped a lot, until it didn’t. The day before my stroke, when I was having those mind-blowing headaches, I went for an adjustment. There is some research now is not so favorable about chiropractic manipulation on the neck. I don’t know. I am not a doctor. But I do know that I am not taking the chance. No more chiropractic for me, anywhere. There are so many other avenues to health that I can look to. And honestly, I haven’t felt the need for it at all since.

The doctors said that I should not paint ceilings again as the sustained tipping back of my head was not the greatest for me. The artery was widening and healing, but why push it? Fine by me. All these years later, I am not sure whether it would be fine for me now. Did they mean not then and I just made it a habit for always? Not sure. Anyway, I was hyperconscious, neurotic and freakishly sensitive about my neck. For the first couple of years, I wouldn’t tip my head back at all. I was afraid, and for good reason. I adjusted every activity to keep my head straight forward or down. It would have been nice to see the flock of geese fly south for the winter as Mom and Cuzzin did, but not important enough to tilt back this head. If I was changing a lightbulb on the ceiling, I got on a stool and reached up. I felt my way through the chore. It worked. As time went on, years went by I loosened up a bit. I relaxed into my own new body and saw the birds fly south. But when someone wanted to touch my neck, put their hands on my neck, anything, I freaked. My goddaughter hugging me was the best thing, but not when she put her arms around my neck. I was terrified that the pressure would damage the artery and I’d stroke out. Irrational, but real to me. My aunt would try to massage me a bit. I craved the touch, but rejected it totally. Tim would gently put his loving hand behind my head. I loved him so but feared stroke more. Irrationality is now really interfering in healthy living.

My Buddhist Reiki Master, Nancy helped me so much. She didn’t wait until I was ready to face the terror. She helped along the readiness. Nancy got me into Reiki as a way of helping me integrate the two sides of my body. With her energy, hands-on I could feel heat and pain on the right side. We met every week. She came with a coffee for us and while Jason napped, she helped me. She healed me with her touch and showed me I had that power within myself. She attuned me to Level 2 in Reiki.   What a gift! I had faith in Nancy and trusted the results I was getting from Reiki. Touching my neck was part of the work and I accepted it. She knew my fears. She felt my energy. The scar was there but she just moved the energy around and through it. She touched the back of my neck a lot and over time, I believe the brain stem just became a part of me, not a red flagged DANGER zone.

But it was still a scar that needed something. And then Nancy died so suddenly from an aneurysm. We had met just the day before. She brought hazelnut coffee to try this time. That was a new flavor for her. We chatted for a long time after we did some Reiki. I was going through some growing pains and she was the best help. I remember we sat in the kitchen and I brought up so many more things than usual to get her help with. The next day, I was baking after school. I remember it was cinnamon swirl banana bread. Nancy was at Toys-R-Us for the first time in her life. Jason’s birthday was a few weeks away and Nancy was on a mission. She adored him and showered on him, all the love and toys and hugs and smiles that her childhood had not have. And that was saying it mildly. So Nancy made a pilgrimage to a place she had never been. She called me 3 times from inside Toys-R-Us. “Did I know there were three different kinds of tracks for Thomas the Tank Engine? Could Tim redo the attic and make space for a whole train railway to be set up without having to take it down and destroy it every time he played? Did I know how many different trains there were?”   She was the proverbial kid in a candy shop. I giggled and went back to my bananas.

The fourth time the phone rang, it was not Nancy. It was a man on her phone saying that Nancy had said “call Rachel,” and had collapsed. By the time I found out where she was, finally reached out to Jennifer to come sit with me at the hospital and got to my hospital, she was gone. Machines were keeping her alive but there was no coming back. Nancy’s heart was beating but she was not there. She had done everything she was meant to do in this life. A few weeks before her death, she was chatting with a wise friend. Nancy told her that she felt her time was soon and she was not scared about it. She said it matter-of-fact like and without sadness. So now her spirit was free and her demons healed. She had peace. Nancy had fun in the toy store and there was certainly joy in her final moments. There had been nothing left unsaid between us. Love was given and love was received, always. And anytime I did Reiki, I would always feel her energy. That wouldn’t change. That night in the hospital I held her hand and did the right things for her. I held Jennifer’s hand too, even though she wasn’t touchy feely, she let me. Thank God she was there with me. At the end of a couple days, after 27 different parts of her were taken to help other people, we let her go.

Without her I stopped practicing the Reiki. My heart was scarred from losing her and I withheld Reiki from myself as part of my grieving. Knowing it would help me and that I could have healing even when she was dead, meant to me that I shouldn’t do it for a time. Does that make sense to anyone other than me? I had this scar in my heart now from loving and losing her. I had survived again. It wasn’t my time and I was grateful, but I felt guilty.

The forth tattoo helped heal the scar on my heart and my brainstem too. A year after the cookie, I got the next tattoo. I no longer followed the original rules Cuzzin and I had made. My tattoos don’t have to be hidden anymore. They are for me and I am way beyond that. I think it is one of those privileges of getting older. And I am grateful. I care less what others think of me. I care more of what I think of me.   I wanted this one to be seen.   And where I wanted it, I couldn’t see it without a mirror. I wanted the tattoo on the back of my neck, over my brainstem. And I wanted another flower. My first tattoo was the Forget-Me-Not. In the years since that tattoo, my aunt had planted the flowers at Wessyfoo. And they spread. I mean they really spread, multiplying by the hundreds, growing a foot tall and covering the whole side yard right up to the kitchen window. Powerful and increasing in strength were the Forget-Me-Nots. Before the blue masses came the delicate lacy, Bleeding Hearts. Perfect for me. Rose tattoos are very popular and they are a flower and I do have the great love of Red Rose Pizzeria. But not this time. Not that flower for that location. Hearts are the symbol of the American Heart and Stroke Association. I wanted some of that power on me. But I didn’t want their heart logo. I wanted a flower. A bleeding heart tattoo over where I had my stroke, and bled out from my brain stem. Now that was the tattoo for me. It was just right.

I went back to Spilt Milk with my design. Tim had a job to do at a client’s house in Hyannis. It was right on the harbor and Jason and I could watch the boats and collect shells while he worked. Ferries and party boats made a constant parade. We had found big conch shells abandoned under the dock. The mussel, clam and scallop shells were treasures to find. The sun shone down on us, the ocean spread in front of us and a yard of beach roses was behind. But not today. Today my Cuzzin met me at the studio. She took Jason and went off to the arcade and carousel and candy shop. Sweet. I went in and got inked. I was alone this time and yet totally did not feel alone. My family was near and Nancy and all my angels were nearer still. Jean Granny was there too. A flower from her yard would grow forever on me. I like that. I worked with the same artist. This time, he went a bit bigger in scale. I could see him itching to do it. Tiny tattoos lost impact. This ink meant so much to me. And the artist was proud of his work. This tattoo would be seen where the cookie was hidden. It had to be right. So bigger it got. That was scary. Scarier was lying face down while he worked. I was afraid of the needle on the back of my neck, but breathed and did Reiki right through the fear. I was afraid that I wouldn’t be able to breathe well enough and my nose would drip too much if I was face down. Would I be able be in that defenseless face down position for as long as he needed to work?


I did and I am glad I did. I wonder when I’ll get my next tattoo. I know what it will be and where; holly berries and leaves on the inside of my wrist. I have a story surrounding that tattoo. It is a good one. There is no scar in the story. But there is a new rule. I am waiting for the fifth tattoo until I can go with my Cuzzin.   The tattoo itself, combined with the tradition and time spent with my Cuzzin, makes a plan put into action that heals me. When it is the right time, the pain in the scars is replaced by joy of the journey.

October 2003

9/30 11mg   9am Physical therapy. worked on skipping? Really. He asked me to skip. I pulled a face. He told me to skip. For the life of me I couldn’t. He said that my body memory had forgotten the sequence of skipping. I said, “who cares?” His answer was that it was part of retraining my body and mind. OK. I am wondering how downtown and the other leaders feel about the letter from my friend and the union. They should have it now. I don’t want to upset them further. I need help.

10/1 11mg Rent is due. I have to go pick up Paxil at the pharmacy. Why? It doesn’t help. 9:30am I have a hair cut. Why? No one cares what I look like? Dr. K says that I can’t lean my head back onto that bowl thingy at the hair dressers. The surface is cold and hard and could do damage. So I don’t. I have to sit on the chair facing the sink thingy. I put my head into the sink, he washes it while my bum faces the salon for all to see. Flattering view. Not. But I do it because Dr. K says I should and I admit that I do feel a bit more human with a fresh hair cut.

10/2 11mg. Blood work at my Doctor’s office. The girls there are so nice. They know me now. Maybe I will bake muffins for them. I sound like Gramma Harriet. I have P.T. at 9:00. Skipping again. Really? I can get one leg and arm going but then just sort of hop with the other. No rhythm. I have the mouth of a truck driver. He has the patience of a saint. We also do work on the big exercise ball. Balance again. I don’t have much.

10/3 11 mg. It is Friday and I got a letter from Them that control my health. They thank me for bringing the grievance. Yeah right. Then they quote the page in the handbook that says that I only get 20 visits per year on physical therapy. Thank you so much, I didn’t know that! NOT! They said “my concern would be brought to the ….Health Plans Benefit and Technology Committee for review. This Committee reviews recommendations from our members and will update any changes to the…benefits as needed.” I have no idea what they are talking about. I think it is babble but hope that someday I might get more help. THEY have told me that I am “one in a million.” What happened to me doesn’t happen. They don’t know what to do with me. I guess I mess up their statistics. I don’t want brain surgery. I just want a hand getting better.

10/4 11 mg I ordered an album called “Simply the Blues.” I am into the blues right now. I think the theme at Thanksgiving will be “the Blues.” I am definitely doing Thanksgiving this year. I will not take a year off. I have no job. This holiday is mine and I will do the work.

10/5 Deb is coming up for the day. Yeah! We are going with Mom and Lola up to get the pumpkins at Howe’s. Lola gets to come. I need her.

10/6 I cancelled my appointment with the psychiatrist. The Paxil doesn’t work and I have nothing to say. I have an MRI at 10 am. The CD player is on the fritz, again. I do my a-z rhymes in my head and make it through. It was cold in there and I am already cold. Just saying.

10/7 11 mg 9:00am PT with Glenn again. I skipped in the correct sequence for 4 strides. Not much, but I did it. We used the hallway for practice. I almost clocked another patient coming out of a room. I have to pick up papers downtown about an extension in my sick leave. Pay bills and go to Rocky’s for birdseed.

10/8 11 mg Call Dr. S and Carole. I need help. Mail car insurance. I found a number to call that might give me information on ways to get myself more rehab services. At least I might find out how other states or the feds look at this issue. I reached out and called the National Stroke Association help line. There was a wicked long wait on the phone. When a human finally answer they said that due to funding, they were under staffed. They referred me to a branch office in Miami? I left a message and someone will call back. Not very encouraging to hear about understaffing at the national level. At 1:15pm I called the American Heart Association in New York. I know my speech stinks right now. But if I sound too icky or someone can’t understand me, I’ll just hang up. I need help. I spoke to a man named Eric. He was very helpful. He said that the issue is larger than just the HMO. He said that I had rights. He told me to reach out to Senator Kennedy. That’s so funny because Gramma Harriet always said what a champion he was for the rights and services of health care for the elderly. Here I am being like her again. Eric told me to start looking things up in the Medical Journals. He also gave me contact information for Lisa. She had a stroke when she was in college. She is from Rhode Island and I should reach out. I sent her an email at 4:30pm.

10/9 11mg. I have to go for Blood work today. This time I do bring muffins. I really appreciate that they use the paper tape over the gauze after the blood draw. The heavy vinyl tape kills me, even on the right side. My skin seems thinner these days. Just like Gramma Harriet again. I ask Dr. S for a speech referral after I get the blood drawn. I need it. I hope I get it. I am slurring really bad. Attractive! Not!

10/10 INR was 1.4. That’s a bit low meaning the blood is a bit too thick. Dose of Coumadin upped to 12 mg.   9:00am I have PT with Glenn. Get ready world! The skipper is here. Yup. I did it. I smiled and cheered like Rocky when he is at the top of the stairs. Glenn cheered too. I did good.

10/11 and 10/12 12 mg. It’s the weekend and I got nothing. I am too tired and slur so bad when I talk. I am taking the babies to bed.

10/13 12 mg. The car needs brake work. I take it. I don’t have to say a word to anyone and no one stares. Good.   I did go to a meeting at my union building because my big friend who is helping asked me to: City’s Insurance Advisory Committee. My union friend asked me to speak about the system of care for stroke. It was a good thing. I was scared but I did it. There were a lot of people there from different areas of the city. Two reps from THEM were at the meeting. They knew me. I knew them. But they would not look at me, speak to me, or in any way acknowledge that I existed. I couldn’t believe it. I was talking about their company and they acted like I was talking about Disney!

10/14 12 mg. I have 8:00 physical therapy with Linda. We do a lot of work on the ball for balance. I drool too much. What a hot mess. At 10:00 am I see Dr. K about the MRI. My blood pressure in his office was 120/70 which was very good. Ever since the stroke, it spikes in any doctor’s office. I wonder why? NOT. Dr. K said that the artery is still slightly narrow. He told me to stay on the Coumadin for another 3 months. I had thought I might be able to switch to aspirin when I was sixth months out. I guess not. He said he will check again in January. He said that I am doing well. He said that the stroke will NOT REOCCUR. He said it will not affect my life span. He said to keep up the Physical Therapy and get into normal living. I will keep improving, he said. I heard him. But what does that mean to me? What is normal living? I stopped by the Speech suite after Dr. K., Carole’s office manager, said that he got a script for speech from Dr. S. I have an appointment with Carole!!! I am so excited. I saw Carole in the hall. I gave her a hug and we chatted. She made a point to telling me that I did not have the slur when I was discharged from her. This was new and we will make it better. I have questions so I go into the medical library and begin google search in medical journals about myself. I print 2 articles and add them to the binder.

10/15   12 mg 8:30 am Glenn for P.T. I want to show off my skipping prowess. He says we need to work on the home exercises. I sulk and whine about being tired. He says I can skip if I give some effort to learning the home routine. He won! I really love his encouragement.   At home, I sat down and wrote a letter to Member Relations of THEM.   I told them about the meeting. “I spoke about my experiences with the HMO regarding my care as a stroke survivor. I spoke about the excellent care provided to me by medical professionals associated with…THEM…. I spoke about difficulties in coordinating my health care due to benefit limits. I voiced appreciation for all the care….” I went on to describe and name those reps and describe their behavior. I deserve better. I want to keep the lines of communication open and include me in that line, because that is my JOB right now. I am my JOB!

10/16 Blood work results show the INR at 2.4 which is really good. 12mg. I am starting occupational therapy for my hands and writing. Right now, I am 10 times worse than my students ever were. I scheduled OT for 12:30 pm and then I have Glen for PT at 1:15 pm. I am exhausted . I got an email back from Lisa. She told me a bit of her story; 3 strokes with the first at age 21. She works for the AHA and says it is great to hear from Survivors.   She said that my story can be an inspiration and I could truly make a difference. “You are a fighter and an inspiration,” she wrote to me about me! She asked me to join their grass roots campaign and I would get information regularly and there would be things I could do. I printed the email.

10/17 12mg. I get paid today and pay it all out in bills.

10/18 12 mg. Today is the Worcester County American Heart Walk.image-_4

I am going to go and see. I have Lola. It will be ok. The registration is at 9am and the walk is at 10:00. It takes a while to find parking. Everyone is walking towards the bandstand in Institute Park. It is so strange. I grew up across the pond in the brick apartments. Mom still lives there. But right now, that seems like a different life, not mine. Everyone has envelopes of money they are turning in. This walk is a fundraiser for the AHA. But I have nothing to give. There is a booth for Survivors and I walk over. It is not crowded. I tell them that I am a stroke survivor and they give me a red cap and tell me to head over to where the walk will start. That was it. I don’t know anyone. My team is me and Lola. We walk over to where the walk will start and at 10:00am, we move. There are three different distances you can go. Lola and I are just doing the mile. I start walking. Lola is next to me. People are all around me, but we are all alone. I feel pretty pathetic and invisible. Out of nowhere, someone is walking next to me. I don’t know where he came from. I turn and look and then I trip. It’s the Mayor. He is walking with me! Me! He comments on Lola and asks me about my red hat. I talk for a minute and then I can’t anymore. Walking and talking just don’t mix. Fortunately, he is a charismatic chatter who starts telling funny stories of his weekend and things going on in the city. He chats and I get to walk with him and try to breathe. He keeps going for the longer distance. Lola and I say thank you to him for the very nice chat and we turn right. As I round the corner, I take off the red cap and put it in my back pack. Very few walkers are doing the short distance. We are heading back into the park, alone again. Lola is tired. But so am I. I tell her I can’t carry her today, but that we are almost done. We walk back and get into the car. No one notices. But we did it. We know it. I love when Lola winks at me. It makes me smile.

10/19 12 mg. It is Sunday and I am going to church. People look at me and give me looks of sympathy. But Farmer Ken is there. It’s worth it.

10/20 12 mg I GET TO SEE CAROLE! At 9:00 am I have to go and get a full evaluation for insurance purposes and to see what’s going on with me. But I will get to see Carole again and I know she helps. I have to go food shopping and go 4 legged kibble shopping too.

10/21 12 mg I have Carole from 11-12 downtown at my hospital. There is work to be done. I start crying when I start talking and I start slurring. It is so humiliating. Why is this happening now? Why me? Why now? She gets me back on track with a hug and a tissue. And we get to work.   Then at 12:45 pm I have OT across town, followed by Glenn at 1:30 pm. I bring blueberry muffins to all. Just like Gramma Harriet.

10/22 12 mg. Today I have Carole at my hospital from 11-12 and then across town to have PT at 1:15 pm.

10/23 INR at 2.3. It is great it has been more stable. So I stay at 12mg. Today is a special trip. I am going with Mom and her friend to Pickity Place. It is a beautiful place to go for lunch. They are nice to take me. I feel like Gramma Harriet being take out for the day by the young folks. I am tired and don’t want to speak for the slur. I look at the scenery a lot. But I don’t say any of this to them. They are nice to do this.

10/24 12mg   I have OT at 1:00pm. She gives me some good exercises for strengthening my hands. I write using a grip on my pencil, just like my first graders. Some role model.   I got a letter from at Account Manager with THEM today. They clearly outlined that they didn’t see the behavior of the two reps as I did. But he did offer apologies. “Having heard your presentation we left with the highest level of respect for you and great appreciation of your situation.” (I don’t want to be appreciated, I want help, to HEAL!!!) He cited the new HIPAA regulations make it difficult to talk about members in public. (these new regulations seem to protect THEM from ever have to be accountable for their crummy policies. There is never a right time to deal with them about me.) He said “You raised some very good points relative to benefit limits and, based on your presentation, I have submitted a suggestion to our Medical Director and other members of the leadership team asking for a review of the physical therapy benefit. [THEY] will contact you if [THEY} make a change to this benefit.” I see a magic wand being waved above my file. Maybe I’ll get some more visits. Maybe not. Why did they save me?

10/25 and 10/26 12 mg. It’s the weekend. I hate the weekends. They are lonely and I can’t do my work. I go on Sunday to the Unicef Carnival at Church. It is for the kids, for Halloween. I used to love it when I was in high school. It is good to go. I definitely feel like the Gramma going to church to watch the “young uns.” I am a “watcher” now, while others do.

10/27 12 mg   I have Carole at 9:00 am. The car needs an oil change and I take care of it early. My car is my freedom. Gotta keep it in good shape. I really sound like Gramma Harriet.

10/28   12 mg.   I have OT at 8:00 am and Carole at 10:00 am. Good to be back at work.

10/29 12 mg. OT at 9:30 am. I am not getting better with the hand strength. After a minute, my hand just gives out. I am doing all the exercises. But I have none, zero stamina. This sucks. My handwriting looks like a preschoolers. It’s embarrassing. This fun is followed by Glenn for PT at 10:00 am and I work the core hard again. I only fall off the ball once. I guess that is improvement. But I drool through half a box of tissues during the work out. Gross.   At home, I got a letter saying that I got some extra time paid on my leave but that it expires on 10/31. I need to submit for additional time. They enclosed a new form for Dr. S.

10/30 12 mg.     10:00 am Carole down at my hospital. At noon I meet Mom at the Art Museum. Pick up new papers at Dr. S.

10/31 12 mg. I get paid today. Good to have money for bills. Glenn for PT at 10:30 and then OT at 11:15. I head downtown with the new papers for more time. My time was up. Now I have got more time.

October 2016

I love October. It gets cooler and drier and I can bake like I want to bake. Pumpkin and apples abound. This year, the weather is hot and humid for much of the month. I drool and wheeze and wait longer to take the air conditioners out. But Jason is in his glory. He wears shorts to school everyday. I leave for school at 6:45ish. He is usually up and starting on “breakus” by then. (That is my childhood term for breakfast, back in use.) This year, our big second grader picks out his own ensemble. The clothes are clean and the choice is his. I get the big reveal when our days are done. I get out of my school and drive over to pick him up from his school. Picking him up is one of my favorite things. The schedule works out that I am out before him. I love that I get to do this. We wait outside the black iron fence in front of the school. There is a minute to chat and decide ahead of time whether or not we are heading to the park around the corner after school, or not. I’ve gotten to know the families of our school. I like that. It’s The real deal neighborhood school.   When we were looking to buy a two family, it had to be here. I wanted this school. I had a picture in my mind of kids walking to school and families playing in the park and kid’s growing up together. That picture is the reality of everyday as I pick up my son at school.

The bell rings inside the old brick school house, the doors open and kindergarten comes out first. I am still surprised he is not in that line of little ones.   Next come the sturdier first graders, and he is not there either. Finally the strutting second grade comes out. He comes out in a line of kids behind his teacher. I always find him, but not by his outfit, because I haven’t seen it yet. I wave at his teacher, she waves back and pats Jason’s shoulder. She let’s him go. He runs full tilt across the school yard, out the gate and then I’ve got him. What a gift. And this month, the lad running to me is sporting shorts. He bounds out of school, always smiling. I love it. I love him. I’d love to have his energy.

Other years, by October I am settled into the routine, getting in a groove and hitting my stride. (Yikes, I sound like a 70’s crooner.) The first of October we head up to Howe’s and get some pumpkins for the front porch. I love the tradition. This year we waiting til the end of the first week, it was so hot and we feared melting pumpkins before Halloween. I didn’t wait to get the rest of the house decorations up though. I had seen our neighbor, the head of the PTO on the last day of September at pick-up and she commented that her family was waiting for our house to get going with the decorations as their cue the season was upon us. With those words, my over worked, exhausted, stressed and stroke symptoming body, perked right up. I got home and bounded up to the attic. The decorations came down by handfuls at first. I found treasures in the attic and set them up down stairs and outside, one by one. The frenzy and fever kicked in as the boxes got opened and I just started hauling them down the stairs, crashing into the door jams and stacking Halloween central on the dining room table. The pear tree gets the purple lights. The big bush gets ghosts and orange lights. The cobwebs cover the front porch, zombie hangs on the front door, witch flies from the second floor porch roof, skulls and purple lights stretch across the front. The headstone rests under the rose bush, Dracula sits in the front garden and Zombies clank their chains in the side yard before the shed. Around the base of the shed are bright orange glowing jack-o-lanterns on spikes and purple globes shape cobwebs around the window. All is well. I am dripping sweat and ready to collapse, but it looks good. Jason has to go to Tae Kwon Do, so I save the rest of the decorations and resting my bones for later. It’s all good, until I do sit down. Then I sort of dissolve into a mound of cake batter, sweet but unstructured, and totally undone.

That is the way this October is, full throttle and totally fun, but overly exhausting, for me. My aunt was heading out to Indiana for work for two weeks and was exhausted before she left. I hear that in her voice and I want to help. Each year she buys more bulbs for the yard. They have to be planted in the fall before the frost. It is so easy to order 100 bulbs in the summer. But when they come in the fall, the task is tough. We went out to Wessyfoo on a Saturday, mid-month to take our final dip in the pool. (I found out that day that it has a new name. Wessyfoo is the name I gave it at age 2, and it stuck. But our dear English friend and benefactor, Ann likes a proper name for things. That’s what they do in England. And so my aunt has done it here. Hemlock Haven: Hemlock for the mere twigs she dug 50 years ago on the mountain, planted in the yard and grew to great hemlocks. Haven is for the sanctuary that she and so many have always found at the bottom of the hill here. I like it. It sounds kind of witchy and mysterious which is good for the month of naming, too.)

The water was down to sixty degrees, but I have to do it every year. Tradition! This Saturday, I went to plant first and dip after. My aunt needed help and I could do it. I wanted to get my hands in the soil there, to put my mark on the land. My aunt pointed and I planted: 40 daffodils near the shed and down by the old apple tree, 30 crocus or “croakers” as my aunt calls them, and in the path through the woods to the brook, 15 English Bluebells. She had seen them with my Dad when she visited him in the spring and wanted them here. The work felt great. My mind cleared and my heart was full. Jenny was grateful and I was happy. The dip in the pool jolted any remaining cobwebs out. BRRRR! Brrr again. So into the hot tub we went after we leapt out of the pool. It was Jason’s idea. And it was a good one. What a gift.

I thought each day, that school would get easier, that I would get used to it and not be so wiped. But it has not settled down at all. We are doing a new reading program. I like to be steps ahead of my students, confident as a master of the road before my students. But not this year. I am working so hard, but on average, I am only a page ahead of my kids. My kids and I have spent the month reading an amazing novel, “Bud, Not Buddy” by Christopher Paul Curtis. It is an amazing novel about a boy in Flint, Michigan in 1936. The Depression is on and our Bud is in an orphanage. The book chronicles his journey. For each module there is an Essential Question which everything we do circles back to. For us, October has been all about how enduring hardships contributes to personal transformation. I can identify with that. And I identify with this boy and his journey, fueled by faith, struggling with fear and trying to roll with all the changes that life throws at him. The era of the Great Depression brings Gramma Harriet, Jean Granny and Dorgan to mind. And they have been with me all month as we read and talk. I told my kids how when my Jean Granny was a young girl, she went for a long walk with her two sisters. They walked out of downtown Westfield, far from the house her family rented. They walked all the way down to a small country lane. And on that road she saw an old farmhouse in a valley with a brook and a barn. She told her sisters that someday she would OWN that house. I guess she told my grandfather Dorgan that too. And sure enough, they did buy it and we are still there. In this work at school, I am reminded that I am not alone in traveling on a hard road. America has been through it, my family has endured and I too have had my tests. But the transformation brought about as a result of living life on life’s terms will blow your mind. Well, it blows my mind. Everyday, I am curious about what is on the next page. I am determined to bring my best to the work.

But it has been so much work. Growing and learning and changing is great work. But completely exhausting. I am trying to keep some kind of balance, rest a bit, eat well, enjoy the season, love my babies, and take care of business. Ha! And Double Guffaw! I am enjoying and getting it all done, but I too am all done. At night, I fall like a beautifully risen bowl of dough, punched down before the baking. My face doesn’t relax as quickly. The muscles are so tense and tight. It takes til about 2 am for them to relent. My mind is even slower to calm down. I haven’t taken the time to get right enough these days to make sleep very possible. Much of the month, I get about 2, 2 hour clips a night. This past week, I decided to do better and I have. I am focusing on the minutes and moments of the day more. I am using my moments before bed to practice some Reiki and give myself a good talking to. Nancy told me that when she couldn’t sleep, she would put her hands on her belly and” slap a few symbols on” her mind and let the healing energy flow. (That is Reiki talk for connecting your energy to the universe, and letting that energy flow through you and heal you.) Whenever I practice Reiki, I feel better. So the crazy, cuckoo pace of my life has not changed. But I changed a few practices. And this week I feel better.

World Stroke Day was on 10/29. I have to keep that upfront as I get ready for Halloween and am so busy with life, the work and its blessing. If I forget about Stroke, if I forget where I came from and how I need to live life, I have nothing. Looking back at 2003 and reading the letters I wrote and what I got for myself from THEM, I am shocked. I see Gramma Harriet in all of that action.   I see her in me now. I had no idea then that I was doing what she did, what she taught me. I was so into the fight for my life. I was a human doing, not a human being. That was my job then. That was my life. I was able to do that because of Gramma Harriet. She was a Union organizer for the International Ladies Garment Worker’s Union back in the days of “Bud, Not Buddy.” In the book, we learn about the sit down strikes going on as labor got organized. and what a fight it was to have what you need. So I thought about Gramma Harriet. Her life and work in Boston was full of helping others, making hard choices and doing the best she could for herself and others. She did the best she could with what she knew at the time. Mistakes were made, of course. What is marvelous about my Gramma is that as she knew better things to do, she did better. I always knew that. She never stopped doing the right thing, helping others and learning better ways, as long as she lived. And I am grateful. ( As I think about her, she didn’t sleep well or long either. She was up late and up early. And in between too. I remember nights during the summers I lived with her where she’d be up in the middle of the night. The stereo would go on and Louis Armstrong would rock the house. https://www.bing.com/videos/search?q=video+of+louis+armstrong&view=detail&mid=3BDD5D92203A709DA2FA3BDD5D92203A709DA2FA&FORM=VIRE  She loved the Great Satchmo. (When she died, we had a gathering at the house for her friends. And per her request, we played this tune and laughed.)

Then the vacuum would sound. Seriously. It would. In the cool of the night, she’d get up if she couldn’t sleep and we’d listen to music. And we danced, in the dark living room with the drapes wide open to let the cool night air in. If sleep was not happening, she’d vacuum. It was too hot to push that thing around during the day, but at nighttime it was the right time to zip around with the vacuum. When the sun came up, she was up too. Sleep or no, she was up to do the work of the day, catch a glimpse of the ocean, do something for others and always to take care of me. She was marvelous that way. And I am like her. God. NO I learned it from her and I practice it, because it works.

At school, I added some community service action into the day for me and my students. The crazy pace of the year made for student and teacher to develop the plan together. We found these Mad-Lib type stroke hero stories on the AHA/ASA World Stroke Day site. We all made them and printed them and hung them outside the room. We found a pledge to be a stroke hero, and we all took it. We found a hip hop video that teaches FAST and we learned it. https://www.bing.com/videos/search?q=hip+hop+fast+stoke+song&view=detail&mid=21929D6F825486E0469921929D6F825486E04699&FORM=VIRE

Then we made fliers for all students and staff in the building. We wrote and copied and cut. We got all the school together and showed the video. We rocked it. Everyone got the flier. They can write their story and take their pledge. If they bring the pledge back signed on Monday, the Red Wagon will be loaded with Candy and they can get a sweet treat. We did this. We got the message out, together.

And in all the rush rush, busy busy, there are wonderful moments too where I GET to watch my son, just watch. What a gift. I GET to watch him find his way and show himself. I GET to be a part of this amazing life that I have been blessed to nurture and protect. For some reason, I was chosen. Math Homework on the computer happens a couple days a week. When Jason is done, sometimes I call up songs that I think Jason might like. Maybe my students have turned me on to a great new tune or I have a great oldie. Whatever the source of inspiration, I share them with Jason. But one day, he had a song for me.


Jason sang along with Jordan. He had seen Jordan on American Idol. I hadn’t watched. I think I was already in bed those days. When I saw the name of the man singing the song Jason had picked, I stopped. I caught a breath. His name was Jordan, like my Jordy. I stopped and listened to Jordan and Jason.  His singing, sincerity and sweetness caught my breath. I didn’t ask Jason why he liked this song or what he liked about it or what it meant to him. For once, I kept my mouth shut, a modern miracle. I got to remember my Jordy and be with my son and be in the moment. It doesn’t get any better than that.


This year on 10/27 Marks 50 years of it’s the great pumpkin Charlie Brown. –beliefs….beliefs that comfort us. Stories.


September 3rd 2003 & 2016

Back to School September Much-Needed-Coffee Tawpic: Discuss


September is my January. It is my new year as I follow the school calendar. And Jason makes it two in my house that beat to this drum. So September is a good time to reflect on the lessons I have learned and set myself up for the new year ahead.

On a daily basis, when I pound all those big cups of water, I am taking care of me, for tomorrow. Taking my wonking-big aspirin and vitamins every day, gardening, meditation-of-baking, hugging my squirmy son, telling my husband I love him, and brushing my teeth are practices that are good for today and tomorrow. And I have to practice everyday. If I want a different and good life today and tomorrow, then I have to practice a healthy life style, everyday. I can’t take a day off, because this Stroke Survivor KNOWS that everyday is a gift I am not guaranteed.

The American Heart and Stroke Association has a great campaign along these lines. It says “Life is Why!” Ain’t that the truth and don’t I know it! (Thank you to my stroke for teaching me that.) They ask us all to think of our Why! Good question. The AHA/ASA asked a bunch of us advocates and survivors to personalize the campaign with our whys! They recorded us and use it in the campaign, in case someone has a hard time getting started on knowing their own. Jason and Tim were with me when I went to go record mine. Jason is too cute. So of course he was asked to be in the clip with me. I know that family is my why. They are why I do stuff today to try to secure a good tomorrow, with and for my family. https://youtu.be/j-RHWWUBEb4   A daily focus on why is a very good idea for me. And isn’t it sweet that Jason says that I am his why. Yeah right! NOT!!!!!!!!!   What he really said when it was his turn was “Mom is wide.” Yup, for all eternity, that is what came out. Everyone cracked up laughing. It was classic. “Mom is wide.” (He got the version you just saw on the 4th or 5th take.) Talk about getting me right sized again. Things don’t always go as planned. They usually don’t. And that is a good thing for me to know.   I get to look back at a day with my family that made everyone laugh. I am blessed to have that day and this one.

When I practice THINKing before I speak, my family today, and me tomorrow, are totally grateful. (Believe ME!) I found THINK for my students at school. But this summer, I put it on my fridge for me, everyday.

Before I speak, T- is it true? (mostly, but often brutal truth),

H- is it helpful? (does nagging count as helping?),

I- is it inspiring? (ouch- that’s a saintly aspiration),

N- is it necessary? (more than likely-NOT),

and K- is it kind? (Sarcasm is not kind, right?)

I am a work in progress, not perfection. (Thank Goddog) I practice because I know that good habits today will mean less messes I have to clean up tomorrow. My belly-barometer definitely lets me know when I have done the wrong thing. I practice because I want more peace in my life. I practice because, bottom line, I need everyone in my life. Every thing I have today, my continued recovery, depends on the people (and Goddog) in my life. (Nothing I do, was my original idea. I am taught and inspired and healed by my peeps.) Alone, I am sunk. I know this about me today.   I depend on my network, for my life. I must take action everyday, feeding a healthy lifestyle.

And I WILL live a happy life. Yes, I mean that. It is my decision. And today, I choose to be happy. The way I look at it, I did not survive a stroke to be miserable. Being happy, for me means living life on life’s terms. I have to accept reality. That practice makes me happy with what I can do, instead of pining for what was or should be. My happiness comes from doing things for the peeps in my life.(I work best when I do for others, not thinking and talking about doing for me. I know this today. )

So I must act right today, in the hopes that my peeps want to be around me tomorrow, because I enrich their lives as well as my own. I hope. All these actions and practices are money in the bank. I am paying it forward, for you and for me.

Not everything our future self will thank us for, is done on a daily basis. Some things are done only once, if we are lucky.

AND nothing set my future up for better living down the road, than marrying Tim on August 23rd, 2008. We had been friends for 2 years. We had “dated,” for lack of a better word, for a few months. A mutual friend wanted a St. Patrick’s Day supper, home cooked. We agreed that he would get the beef and I would cook and host the meal. We both invited a couple of friend to join us. Tim was one of the friends that came to supper. It was a wonderful night of food and friends. That meal ended, but Tim and I didn’t. I started inviting just Tim over for supper. And he came. It was so strange. I didn’t really even think about it. I would be near him, and the invitation just came out my mouth.

Since my stroke, at age 30, (when EVERYONE else in my life had families and loved ones and lives, Oh My! ) I had whined “30 years old and no man, no baby. But I get a big, ole’ stroke.” Over and over went the mantra. But that year, the line ceased. It was replaced with, “no man, no baby…I’m gonna get me a super PHAT car. (my students taught me it meant, Pretty Hot and Tempting set of wheels and made me sound maybe a tiny bit cool. Maybe, they said.) Saab was what I wanted, with leather and sunroof and heated seats and comfort galore. A teacher/friend had taken me to a dealer. I had gone for a test-drive and worked out the money end. For 6 months, I set my sights on that dreamy car and saved my pennies. That dream for myself, inspired and motivated me to do the next right thing and work hard for the duration. It felt good to pay it forward, to MYSELF and not wait for someone else to do it for me.

Right around our St. Patrick’s Day feast, I went to a trusted car dealer and asked him to get me a Saab at auction. He said he would do as I wished, but that Saab wasn’t the car for me. It was a raw, rainy afternoon. He pointed out his window and said, “That’s your car.” Through the dark and gloom I saw a jet black, glistening beast of a car. “That’s a freaking Lexus,” I said in shock, with eyes wide open. “That’s right. That’s your car.” He repeated. Cynics may say that he was just trying to make a sale. But as I said before, I trusted him. And so much more important, is how I felt when he said those words to me. I saw that jet black, glistening,LEXUS beast as the holy grail of luxury cars. It was a “cool person’s car.” It was something unattainable for me, for the others in life,. And here he was saying it fit me. That Lexus was supposed to be MINE. (Wessyfoo clan says that “Mine” was a big word for me as a child. I came to believe that it sort of defined me, clutching stubborn hands and saying that word.) What I heard that day was that I was worthy of what I thought, was the best. And other people saw me as worthy too. I was no longer the perpetual victim. I was a survivor and I was living the life I had only dreamed of.

It was a spiritual awakening for me, to be sure. I bought that Lexus. And I loved that Lexus. (Yup, I loved a car. And Lola, my Pomeranian Goddog, loved that car. She looked “the bomb” seated in it, front seat of course.) I picked the car up a few days later and went to hang out with friends. I saw Tim there and dangled the key in front of him and asked if he wanted to go for a drive. Now, you must understand that I did not do this! I swear, I have no idea why I would do that! That is so not me. I had just picked up MY dream car. And here I am offering a newish friend the keys, to drive ME around in MY new baby! It was MINE and I was sharing. What? What was that about? I didn’t stop and question it. Tim took the keys. He was as shocked as I was by the invite and his own response, Something greater was at work here. We both recognized and cooperated with that magical moment that brought us together.   We got into the car and he drove us down the road, in total silence.   Speechless. Blessed.

In the weeks following, I cooked meals for us, with increasing frequency. He taught me Backgammon, and we watched Red Sox and Celtics games. We played darts and I always lost. (And it didn’t bother ME to lose. What? That’s not me.) We drank coffee and sat in front of the fire. And then one day, Tim was the man who came to dinner, and never left. Hikes in early spring to special places, introductions to his family, and outings with friends were added to our days together. School ended in June and then we got “THE NEWS.”

My Doctor S, told us we were going to be parents. Inconceivable! And yet, reality. Lola, the Goddog, had picked Tim for me and I had cooperated. And cooperating is not one of my strong suits. This inconceivable sequence of events was not of my pushy and controlling design. I deviated from my normal course. I got off the roller coaster and followed my peace. Good people in my life, suggested that life could only be lived one day at a time. And I believed them. I wanted family. (My solitary, actions done in isolation, were not reaping my desired results. If I wanted family, I would have to find and make family everyday with the people in my life. If I wanted family, I would have to watch and learn and be taught by people who had the family that I so desperately wanted. My heart’s desire.) And this one time, for no good reason of my own, I followed the best man I knew, for me.

Tim started asking me, once a week, to marry him. I didn’t exactly say no. I didn’t exactly say yes. I didn’t exactly believe that I was pregnant and we were going to have a baby. It was so surreal. (It still is.) My Doctor S had saved my life when I stroked out in her office. My Doctor S. had told me I could teach other folk’s children full time after my stroke. My Doctor S. told me that I was healthy, but that having my own children, wasn’t in the cards. And I believed her. And here I was, pregnant. My heart’s desire.

My stroke made (and still makes) parts of my body pretty quiet. I didn’t have morning sickness. I just wasn’t really hungry for breakfast, I think. It was and is hard for me to listen to my body. I felt different. I knew something was different. I was exhausted, I think. But was it my normal stroke thing? I had puffy ankles. But was it my normal stroke thing? I was moody and emotional. But was it my normal, Rachel trying to be human, thing? I believed MY Doctor S. when she said that I was pregnant.

But the “normal pregnancy” stories that I believed because my family of friends and society told me what normal was, were NOT my experience. I wasn’t normal anyway. I wasn’t supposed to be pregnant. I wasn’t supposed to be able to have a normal life as a wife and mother. (Honestly, I hadn’t wanted normal for most of my life. Or really honestly, maybe the truth is that I desperately wanted it, but didn’t know how to have it and couldn’t yet ask for help. My stroke, got me real honest- real FAST.)

The fact that I was pregnant, was an extraordinary, inconceivable reality for me. (I keep saying “inconceivable.” I love that word ever since the classic film, The Princess Bride.) That traditional family unit was not me. But here I was. And Tim wanted to get married. He wanted to marry me. (What a crazy notion, I thought then, and now.) Neither of us wasted time with the predictable question, “would we even be considering marriage if I wasn’t pregnant?” For that I am grateful. We both were following a path, not of our design. Yet we both knew it was the right path. “Life is Crazy,” Jean Granny would say. So Tim would ask me to marry him. I would laugh. Was he serious? Why was he doing this?

Each week, I’d add a bit more thought and a bit more dialogue to this marriage proposal. The first time, I just laughed and said “seriously?” I couldn’t wrap my head around the idea of me being a married mom.

The second time Tim proposed, I laughed. Then I said, we’d have to be good parents, for life. What would that look like? What did it mean to be good parents? We talked a bit. Tim told me how important he totally knew it was right for us to be one family of 3, under one roof, with one last name. He knew. This time, I took the deep breathe and some time to think.

The third time he asked me to marry him, I smiled but didn’t out and out guffaw. I turned and looked at him. I told him that I was only getting married once. This was for life. This time, he took a breath, a deep breath.

The forth and final time he asked, I was watching the morning news, sitting right in front of the air conditioner on the blanket chest, at the end of the bed. I was trying to muster the energy to get dressed, or at least partly dressed. Tim came and sat beside me and held my hand. I might of smiled nervously. I knew what was coming and I think I knew that this time, I had an answer. He asked me to marry him, for life. I said yes, but…(Yup, I agreed to marry him, but I had a “but” he had to agree to.) I told him that we had to have a good and happy marriage. I admitted I had no real idea how to do that. But that each and everyday of our life, I needed us to practice a relationship that drew us together and inspired us and made us happy. Every single day. For the rest of our lives. I remember saying that it would be hard work. Tim took another deep breath, and another. He agreed. We could have shook hands on it. But we didn’t. He wrapped my sweaty, bloated, cranky self into a big bear hug. He kissed my unbrushed mouth. And that was that. Time to make breakfast for him before he left for work. (I was thankfully on summer vacation.)

It was sometime that morning, and I don’t know who called who first. “When and Where are we going to do this?” emerged the new question. It had to happen this summer. We had to get married while I was on vacation. That is an unspoken part of the teacher code. But where?

We went out to Wessyfoo to break the news of the baby and the wedding. And the answer to Where, came quick. Wessyfoo. It had to be. What a celebration for Jean Granny. Her long ago found, family home would bear witness to our wedding and to the next generation of the clan. Meant to be. I think Tim and I were in shock at such massive, rapid fire decisions and changes. While we sat in disbelief, the Wessyfoo family sorted out the details. Within minutes, August 23rd was secured. My aunt and uncle and New York Cousin, bantered the summer calendar dates around like ping pong balls over our heads. And the date emerged. It was the one true day. (I hoped it would be sunny.)

A budget was awkwardly discussed. (A wedding gala is not what any of us wanted. That would never be our focus. Family was the focus. We wanted our family and friends to be together and eat together as we became a family. Food, extra chairs and tables, wedding bands and fresh wedding garb were the noted on the list of expenditures.) A location for the ceremony, down by the old apple tree on the way to brook, was set. As sacred spring and early summer flowers would have passed, the field could be mowed and would make a perfect spot. The meal would be in the barn. The menu would be Sesame Baked Chicken and Potato salad. The wedding party was decided, and would of course include a beautiful girl escorting the equally beautiful Goddog, Lola. My aunt would prepare flower arrangements and a few bouquets to be carried. The ancient hydrangea, phlox, and asters would provide their blooms. And that was that.

Back at home, preparations continued as new parts of our plan were revealed. A cake? Of course, a cake. A real and proper, white and tiered wedding cake. And I wanted to make it. And I wanted it to look good and taste better. I was home for summer anyway. I guess I wanted a challenge. That hot and pregnant summer when I could have rested up, I wanted to get involved in this Big, with a capital Huge, project. My dear friend, when I told her I was pregnant, said “the baby eats your brain, and never gives it back.” I think she was right. And I think that explains why I got involved in making my own wedding cake.

But Tim came through with way to make it happen. Tim always comes through. His friend was the head baker at a local college. And he would take me under his wing, and teach me how to make a right and proper, tiered, white wedding cake.

The cake became my top priority of the summer. Of course it did. Baking and sugar and getting my hands in flour, made sense of my wild and crazy world. It was a stabilizing force at an incredible changeable time in my life. (I guess life is always that changeable and baking has become a sweet anchor for me, everyday.)

Our baker friend came over once and we worked out the specs of the cake. Each layer of a tiered cake is really 3 layers of cake put together and then frosted to look like one big layer. Did you know that? I had no clue. But I was going to do it. We would do 3, 3 layer tiers in descending size up to a 6 inch top cake. We would decorate with buttercream frosting and perhaps add fresh flowers in Wessyfoo.

None of the fru-fru fake stuff on there. Save fru-fru for decorating the nursery or for the clothes for the baby that the doctor told me would be here in February. I really and truly still could not wrap my head around the fact that I, me, the strokey, was pregnant. How could this totally normal and human thing be happening to the freaky robot alien that I had been a few years ago? Since I couldn’t understand it intellectually, I did what my stroke had trained me for. I did every right action that might help me and the baby be healthy. I followed trusted, expert advice, to the “T.” On a physical level obviously, my post-stroke body was healthy enough to be pregnant. But it was very definitely a post-stroke body, a very quiet and often sensation-dull body. My spirit was alive and telling me being pregnant was a singularly huge event in my life. My body wasn’t speaking so loud.  I didn’t feel the way they described in the pre-natal books. Things about me were growing and changing, yes. But all the physical sensitivity and twinges of babiness that it said would happen at week 5 or 10, not so much. And there was no one like me that I could go to who understood. So I did the best I could, living every second WAY outside my new comfort zone, and focused on baking the best wedding cake to honor this new life.

Our Baker had his recipe for the standard cake and frosting from his college, printed out for me. He would call me and give me assignments as needed. I had no idea what I was doing. This wedding cake was WAY out of my realm of baking. For once in my life I was asking to be taught. And I committed to be the very best student. (Thankfully I had learned from my Uncle Chef. I knew better than to question my teacher.Just do what the baker said.) I would wait to be told what to do. And I would do it. I had faith in him. He knew the process. He knew what was best. I didn’t. I sat back and waited to be told what to do. (I know, totally not my usual. I know, sometimes it is hard for teachers to be teachable. I know, I am so grateful to my stroke for giving me that gift.)

The day before the wedding, Our Baker returned with what looked like two massive, construction workers tool boxes. But they were my kind of tool boxes. They were filled with baking tools: 2 big turntables for putting cakes on while you decorate, a dozen different spatulas at least, mounds of bags and tips for piping by the dozens. In my kitchen, Tim, my dear friend and her daughter, Our Baker, Lola and I gathered. Tim videotaped the production for my Dad and Dorothy in England. (Recording and watching the wedding was not the priority. The cake was. I love my Dad!) Our Baker, did. I watched. Then I did. And that afternoon, THE Cake was born.

Somehow, I just knew that under Our Baker’s direction, the cake would turn out magnificent.


And it did. I had faith in the process. (I think that practice helped me have faith in other areas of my life too. I think the process and success of that day, gave me confidence in my ability to be a good wife and mother. “Life is Crazy.” ) That type of guaranteed results and control is possible with experienced bakers, and highly likely with a Master that I worked with. But in real life, with raising kids, marriage, jobs, and health, there are absolutely no such guarantees. All you can do is the best you can do today, fed by the love and grit and wisdom of those that came before. You set yourself up for a happy tomorrow. No promises, no guarantees, I know. But I know that when bad stuff comes down the road, regrets of making myself miserable every day earlier, never helps. That cake and that day, made for the sweetest and strongest foundation that I could imagine for our family.

The next day, our wedding day was sunny. It was the one truly perfect day that summer. The cake zoomed down the Pike to Wessyfoo driven by Our Baker. Tim and I, family and friends descended on Wessyfoo and we were married. The ceremony down by the old apple tree in the field, meal in the barn, dip in the pool, and of course the Cake, was perfect for us. I know Jean Granny and Gramma Harriet were there, smiling. I know that many there that day said that it was the best wedding they had been too. I know that I was happy, beyond pregnancy hormones. I know it was beyond my wildest dreams and infinitely better because it was real.

The only glitch surrounded the appetizer. My uncle had gone to Red Rose and picked up two Party Sized Pizzas to be cut up and passed as the appetizer after the ceremony, before the meal. When I got to Wessyfoo that morning, I was heading upstairs to change into my dress. And there it was. I saw it. The crusts of the sacred Pizza were cut off and piled up in the big pan designated for scraps to give to the ‘coons and other animals at night. The delicious, flaky, crispy, soft, sacred dough of MY Red Rose Pizza had been trimmed off by Chef Uncle to make little bite sized pieces of pizza for the wedding guests to enjoy. I freaked. I saw red. I know I yelled. I know I fumed. I know I grabbed several crusts and jammed them into my mouth. Thus stifled, my mom led me swiftly out of the kitchen and upstairs to get changed. I calmed down eventually. I forgave my Chef Uncle. And Tim and I left Wessyfoo that afternoon and got our own Party Size Red Rose Pizza to bring back to Worcester. That made everything alright, better than alright. We had cake and pizza for days!

Of all the things to remember about my wedding day, I remember the pile of pizza crusts. Life is Crazy, I hear my Jean Granny say. I remember other things too. I remember thinking how happy Wessyfoo was. Crazy. The house was happy having us get married there that day. I felt my roots dig down into the soil that day, solid and strong. I remember faces and hugs and families together. I remember kids splashing kids in the pool. How great to take a swim at a wedding! I remember realizing my truth. I would never have had such a day without my stroke. I knew it. Without my stroke, Tim and I would not have found each other. I knew that. Without my stroke, I never would have learned how to accept help and cherish the gifts I had each day. Truth.

I remember looking out the window of the Pink Room, where I was getting dressed. I saw Tim in his new suit down by the old apple tree. I saw the sun shine on him. I remember thinking that I couldn’t believe how lucky I was to have this day with him. He wanted to marry me. And he was here, dressed and ready to go. He was in it (our life), with me of all people, for the long haul. Life is Crazy. We didn’t dance or have a wedding song that day. It may sound corny, but family and friends enjoying the day, was the best music. At the weddings we have been to since, we have heard and danced to many of the songs that I have already played you. They speak to more folks than just me, I see. Today I shared an oldie, but goodie with Jason in the car: a classic tune remade as a duet by outstanding artists. A duet seems suited to a wedding song. Jason loved it and since he was an essential attendee of the wedding, his vote counts. So Tim, let’s call this our wedding song. I think Jean Granny would love the title. I know Gramma Harriet loved the artist. And the rest is history.



September 4th 2003

My INR has been through the roof. It was 5.0 the other day. From what I understand, my blood is running like jet fuel. I picture my innards sort of liquefying. V. Cool mind movie if I don’t take it personal. So I can’t take any coumadin for 3 days and then I get the blood checked again down at my hospital. They put me on 10 mg a day for three days to try to stablilize the levels.

Now I go for blood work again and it is 1.4 which is super thick and gloopy blood.

So the dose of coumadin is up to 15 mg for one day then two days on 12 mg. Then back to my hospital for the second time in the same week to check again.  It is up to 1.7 so I am going to stay for a week at 12.5 mg per day. Why is it going up and down so much? I feel the same everyday. (Like cr@*) Nothing seems different with me, but the blood says otherwise. I am trying to visualize the artery healing perfectly open wide and the blood flowing easily through it. I imagine that I feel good and am doing good. I am me again.   Then I open my eyes. There I am again, with my droopy, draggy face, cuckoo eyes, pasty skin and that look of terror in my eyes. The strokey reigns and is not dissapearing.

I keep checking my pupils in the mirror. I look for signs of the next stroke. They look ok and they are reacting to light the way they should. But I don’t believe them. My bloodwork says that I am pretty volatile on the inside. I have these near freaking out, panic attacks several times a day. My breathing gets psychotic. Then I forget to breathe and choke a bit. When I get back to whatever the heck normal is now, I have a headache. I sit and wait for it to pass or for the next stroke to hit. I hold the phone in one hand and pet Lola with the other while I wait. The stroke hasn’t hit yet. But I am not back to normal. I feel and look like death. I keep waiting to wake up from this nightmare and be me again.   But it doesn’t happen.

I am so grateful that my college/sister friend has some time for me. I met her and went to the mall for a bit one afternoon. It was nice just to follow my friend and her daughter around. We looked at pretty things. I didn’t have to do anything or think about me. I watched them shop and get a few great outfits for the now, 1 year old beauty. It was fun to see her get things. Her smile did make me smile, that day. The mall was bustling and I didn’t feel like anyone noticed me at all. I just got to blend in. That was relaxing. I almost felt good. I am safe with her.

Back at home there is no change either. They still say that I can’t have physical therapy and speech therapy. They still say that I have hit my caps. I am still getting worse without the care. I have only one physical therapy appointment again this week and it’s at the outpatient location. And I have no speech therapy. I am still trying to get more P.T. But they say that they need a new injury to increase visits. My chronic issues don’t warrant more sessions, they say. I am calling a lawyer. I have a friend from church who is a lawyer. I will call his firm and try to get help dealing with Them, that handle my insurance. I will tell Dr. S. about this at our next visit.

At least they are off my back about going back to work right now. My Doctor wrote a one sentence note on her prescription pad saying that I was unable to work until at least October 1st, due to illness. Short and Sweet and it worked. So I have a few weeks to try to fight for more time and help. I am getting another referral for services I hope. But there is a problem, for me. The referral request has crossed paths in the mail with the rejection letters. They had not received the referral for new PT from my doctor. So they sent a rejection of services, letter to me about my repeated calls begging for more PT. Now, in the hopes of speeding up rejection or help, I am going direct to the doctor who heads the Appeals department for Them. They say a letter was re-sent to me regarding this issue.  Then They said, they will resend the letter since I never got it. But they won’t tell me the contents of the letter. Then they transfer me to his secretary, when I call back because I have still gotten no letter or letters after another week and a half.

She asked me to go through a case manager because They don’t deal directly with patients. Then she asked for my name and date of birth and puts me on hold. Then that secretary told me that HE, the doctor in charge of appeals would call me back. And that was that. It seems like they know who I am in THE company. I don’t think it is a good thing. A nurse from my Doctor called me a few minutes after this big kufuffle. She said that I can get more PT at another location in the interim of the paperwork and policy being sorted out. The new location will call me for an appointment. Weird.

The next day, I hadn’t heard from the doctor in charge of appeals again, so I called the office. The nurse said he was out of the office until 430pm (out until then seems weird) but that he did have my message. She sort of hung up in frustration. I just keep letting everyone know I am waiting for answers. I am not letting them forget that they are supposed to talk to me. I keep calling until they give me answers. I am not working. This is my work.

The next day, I called back and she told me he was in a meeting but that he had my message. I said that I had been waiting two days and now I thought it best if I just come to his office and wait til he had time for me. She told me NOT to come.

I told her that it was just a piece of paper to him, but it was my right to see it and his responsibility to speak to me. She said “physicians (in that office) don’t speak to patients.” I asked her for the supervisor’s name so that I could try to get the answers that they said they had for me, about me. That person’s secretary suggested that I call Member Relations and get connected with the Office for Patient Protection since I was having a hard time navigating the system. I thanked her for the advice. I called Member Relations and a nice woman there said “any physician should speak to members.” She sounded frustrated. I was glad it wasn’t just me. It was Friday and I had no answers. I would go to the office myself, on Monday. The new PT place called and I told them I had a flare-up of my TMJ and needed to see them. I hope that was the right thing to say. Is that my new injury that will get me seen? I hope so. I just want to drool less and breathe a bit easier.

On Monday, at 10:30am, I walked into the Tower building that was the nerve center of Them. They told me that the first Doctor won’t see me. “It’s not the usual route to take.” she told me. The second head doctor was not in. So I sat down on a chair and told them I’d wait until someone could give me answers. A few minutes later the secretary told me that a Manager of Appeals would speak with me.   We went into a small room with no windows when he arrived. I was scared. No one knew I was here and now I didn’t know where I was. I didn’t feel safe. They had made it clear that I was not welcome.

The manager said that usually we would file a grievance and so he left me alone while he went and got a grievance representative. I was alone and getting more nervous. When this guy came in he said that PT at the new location would be indeed covered within the insurance plan. Good news. Why hadn’t anyone told me? But the original rejection of the PT by the big Doctor concerned me and why wouldn’t he explain to me why I was rejected or speak to me at all about my case?

The grievance guy said that I could file a grievance about big Doctor refusing to see me. I could file that. He went on to tell me that the “interpretation of benefits” showed that the therapy I was requesting was not a medical necessity for someone of my population. I guess getting TMJ more healed is not a usual reason for an extension of PT or Speech benefits. But I was NOT the usual patient. They knew I was a medical rarity for my stroke. (I had researched myself and knew that I was 1 in 1 million for my stroke at my age.) They knew this. What was going on here? The big Doctor had been given all the information about me and had still made a decision based on the other hypothetical 999,999 patients.   He was in the health care business? And I have the brain damage? I left the Tower knowing I had the therapies approved and so I sort of won. But I felt humiliated and shaken and less than. I went home and filed another grievance. I fell asleep reading the Member Handbook that night.

I got a call the next day from the Manager. He said that my representative was my Doctor and that they were used to being in communication with her. I told them that my Doctor had a great many, very ill patients and was very busy. I told him that I was representing myself, as I was the only patient I was concerned with. I told him that I knew of no other stroke patient that could be representing themselves. They needed the representation from an able bodied navigator.  I didn’t and I needed things to be done for me, now. I needed to feel that I was in control of something about my life right now. That was at 8:30am.

9am- called my neurologist and booked my next MRI for 10/6 with a results follow-up on 10/14.

940am I did check in with the Case Manager my Doctor had assigned me. I told her everything that I was trying to do and had actually done. She encouraged my pursuits and told me to check in next month. (I felt like she was impressed with how much I had done and how far I had gotten. I heard admiration for the patient from the case manager for the action I was taking. I felt she thought I could help a stroke patient more than she could. I both liked and hated that feeling.)

950 am- called the Office of Patient Protection again and left message.

955am- I called the lawyer I knew and left a message.

958am- called Medical Records to see if my file was ready to be picked up.

959am- called My hospital to get additional records and scheduled to pick them up on Friday.

NOON- Office of Patient Protection called me! They said I could file a complaint with the Division of Healthcare Quality. They would investigate to see if there had been a delay in care.

I might need a lawyer for that, they said.

I got a number for the Division of Insurance and will discuss the PT cap on benefits. I have to make sure that when I make my case, I connect for them that my PT is part of my speech referral. The stroke caused the TMJ and swallowing and speaking issues. And their treatment is connected. Both therapies are essential for my care and therefore they need to be looked at together, and not separately as had been done for me. They will send me a form right away and I need to include all of this information before I return it.

1210pm I called the Division of Health Care Quality. I got the address and am supposed to send a letter ATTENTION: Complaint Unit. I am to include the details from my interactions and issues. I am to ask in this letter for an acknowledgement letter.

1215pm I called the Division of Insurance and was put on hold.

1217pm The lawyer I know beeped in. His office can’t help me because they do work for Them. He told me to check with the Consumer Advocacy Group and Health Law Advocates. He told me to check with my union for legal coverage. He said he would call me back with telephone numbers and more details.

1220pm I called back the Division of Insurance and asked to speak to the legal team. I left a message with them.

Next Day-

1000am I called the Division of Insurance and was transferred to the office of General Council. Left message.

1001am I called the union and they will call me back.


Next Day

830am Called the man of my union, my friend who helps me. He said he will contact that state lawyers.

9am blood levels done at my hospital and then picked up paperwork that was ready. My Carole was there so I talked to her. She thinks her letter and its words might help clarify with Them. She wrote “the goal is not to decrease the droop (with the PT. Maybe they thought the PT massage was supposed to help cosmetically and that is why they had issues.) but to decrease spasticity and relax the TMJ so that there is an increase in mouth opening. Patient needs massage for this first and then strengthening.” The PT place had wanted to give me E-Stim and this “technique is counterindicated for my goal.”   Ahhh. Now I understand. We need to relax the muscles so I can open my mouth and then retrain them in the right manner. That makes sense to me. It might just work. But They don’t seem to think so, or care. And they have the power.

1030am- I talked to a lovely woman at the Division of Insurance and office of the General Council. She will get back to me next week RE: connection of PT to Speech with Stroke patients. I explained the 20 visit cap issues of THEM.

I got a letter in the mail today, that was not a bill. It was from Them. The Chief Medical Officer of Them had reviewed my grievance about the long delayed return call from the Big Doctor. There was an apology for any inconvenience. Then there was a paragraph of blah-blah. I say blah-blah with all due respect for Them and knowledge I am correct in my word choice. They have no idea. How is all this bureaucracy part of health care in general? How is any of this supposed to get me healthier specifically? Am I supposed to believe that they care about Rachel? I don’t really care if they do. I just want my life back and I need Their help.

Their Letter said that they don’t routinely discuss denials directly with members. It said that their handbook and staff inform members of alternatives. It said that staff should tell members to speak with an “analyst who can answer their questions or the member should be directed to the Appeals Department to initiate an appeal of the denial.” My concerns had been “forwarded to the Big Doctor and staff to remind them of this process. The letter gave me page numbers in the Handbook and telephone numbers for the Office of Patient Protection and their own office telephone numbers. It ended “We take seriously any comments or concerns expressed by our members and we thank you for taking the time to contact us.”


Now I know. I do want to get better. (Some part of me that is going through all this B.S., wants to live.) I don’t believe They want the same thing. I know no other stroke survivors can do what I have been doing for themselves to try to get well, or at least get what they deserve. They are dead or so disabled they can’t even speak. I know that I am finding out how this system really treats Strokeys and therefore what they believe the value of a Stroke patient’s life is. I know it is not right. I know that someone here is crazy. I know it is not me.


Most people I used to know are back in school. It is September and they are busy with a new year and new kids. My godmother/teacher friend had her second baby on September 12th at 9:04am. She weighed 9 pounds 5 ounces. She had a very rough pregnancy and I was no help, just added stress. She and her daughter are doing well now and came to visit me when she was one week old, after a visit to the pediatrician. I knew they were coming over and I wanted to be fresh and happy and ready. But I wasn’t. It was 11 o’clock in the morning and I hadn’t even brushed my teeth. I had a robe on over the sweats I had slept in.

Into my house came this shiny new mom, her beaming-with-pride-husband and this absolutely breathtaking, week old baby girl. I saw a happy family in my living room. And I was happy for them. The three of them were so beautiful and had such joy in their eyes and purpose in their day. They brought this angel for me to see and I did smile. Oh,I hope I smiled. I am not sure. I was not smiling at all inside. It’s like I was receding from life. Disappearing from the everyday life of the 30 something professional that I had been. Their lives were going forward. Not mine. And I knew it.

I am back at a Shrink for the millionth time in my life. My Doctors say that I am depressed and talking and taking medication is suggested. So I go. I go again. I’ve been in therapy most of my life. I know the drill. And now I am talking and taking medication, and I am no different. I talk about the stroke and what I feel and what I do everyday. But they don’t get it. They don’t know what to say to me now. A 30 year old with a stroke is something they have never seen. They let me talk. They don’t really have much to say back to me. They don’t have a clue. But I go. Whatever. At the therapist’s, I told her that I felt very ill. She actually drove me over to my Doctor. My Doctor checked me out right away.  I was fine. Panic Attack.

Next day: 905 am from the Division of Insurance: I was right. There is NO cap for Speech Therapy for Stroke patients. If it is medically indicated by my Doctor, they have to give it to me. PT is not included. Only services of speech and language, but if the condition is caused by stroke and can be treated in speech, I am covered. I was right. I knew it! Why don’t They?

4 days later: Went to the ER at 10pm for weakness and dizziness and trouble breathing. I couldn’t stand it. I really thought I was having another stroke. I wasn’t, and was home before midnight. I get myself so worked up and worried with everything. Going to the hospital and having them tell me that I am not having another stroke, should not be the only way I calm down. I just don’t know what to do anymore. This sucks. I am crazy.


So this month, everything changed, but not for the better. And nothing changed, I am not improving. I am so tired. But I barely sleep. And lately, when I do, I kind of wish I wouldn’t wake up





September 4th 2016

Since August 1st, the objective has been clear. In this house it is not about back-to-school or the end of summer, boo-hoo. The focus, some might call it obsession, is pin-pointed on Labor Day Weekend. It’s all about the Spencer Fair, and what goes on in the Exhibit Hall. Yee Haw. I have been thinking about it all year since the last fair. I make notes on the kitchen calendar throughout the year as I bake things that might be a winner for the fair, lest I forget.

I figure that this is my 37th year going to the Spencer Fair with my Mom. We always go on the Sunday to watch the Horse Pulls. We sit and watch the teams pull the boat as the load increases to thousands of pounds. We see the same folks in the crowd, horses pulling and fair people working in the dust of late summer. Year after year. After watching a class or two, we walk around and look at the Poultry tent, the Cattle Barn, buy a few things in the Industrial Barn and make our way, always to the Exhibit Hall. People, young and old, show veggies and flowers that they have raised. They put up canned goods, crochet and tat, take photographs, make Veggie Animals and they Bake! They bake apple pies, quick breads, cookies and coffee cakes. Tables and tables are covered with magnificent foods, all with only one small slice cut from them, for judging. And some get ribbons. All this effort and time for pretty ribbons, I used to think. How silly!  As a child and into adulthood, I walked through the Hall, judging what others had done. I stood outside and commented on whether things were good or not, when all I had done was paid for a ticket to get in.

But my stroke changed all that. Thank Goddog. I decided to put up or shut up, so to speak. That first fair after my stroke in 2003, we went. It was only for a couple hours and even that exhausted me. I wasn’t into much that year, but I had to go in the Exhibit Hall. I remember looking at the apple pies and wondering about who made them. I didn’t say a word negative, for fear of hurting the baker’s feelings if they were nearby. I did say out loud how pretty the pies looked and how I wished I could taste them. Something had changed for me. My perspective was different and I could no longer stomach judging from above. I had changed. For the better, I realize now.

I decided to become a part of the Spencer Fair: I would enter things and be a part of what people came to see and enjoy. 10 years ago I made my first entries. I think that first year, I put in 3 or four goodies. It was terrifying to figure out what to put in and where to put it and how to label it and wondering if I got it “just right.” It was also the greatest rush. No one knew who I was. No one knew me as a teacher or stroke survivor or anything. I was just another entry. They just knew my baked goods. And they liked them. I got a ribbon my first year. I strutted around the fair that year like a prize winning rooster. I was proud.

Over the years I have increased the amount of entries and expanded the range of categories to include photographs, crocheted items and blankets, and decoupaged trays. The baking and crochet win ribbons every year. The others have all won the hearts of those I give them to as gifts. Jason has entered and Tim and my mom.

I think planning for the fair and preparing all the entries serves another purpose for me. It is hard to transition from summer, back to school and fall.   I love the summer and its’ family time and fun. But I also love that I get to go back to school. The routine is good for me. Contributing to my city and helping children is something I need to do. Yup, I need to be a part of helping kids grow and realize their potential. I am healthy enough to teach full time. I know that I have a gift many stroke survivors do not. I love so many that I work with and I think kids are the “bee’s knees.” But the transition is difficult for me. I think so much, too much. I can be a worrier and a control freak. Focusing on the fair and its’ glorious celebration of what our community grows and makes is just the ticket for me. It helps me get organized. I am disciplined again to get all my entries in order. I set the highest expectations for myself and I look forward to the day. It is a good practice for me. The fair is still a family tradition on Labor Day weekend, but it is something more as well. And this year was no exception.

Jason’s entries: This was his last year entering as Pre-Junior.

He entered at photograph. The picture he took at Wessyfoo this summer, just gazing up to the sun through the black walnut trees. He picked the shot. He took the shot. We had two copies printed; one for us and one for Jenny. He picked out the matte, decided which way it was oriented and wrote out the entry card, front and back. Result: First Place, Blue Ribbon.

He entered the Snack Mix category. He made a Cinnamon, White Chocolate Covered Pretzel Mix. The recipe required making a hot sugar butter mixture in the microwave. He measured and mixed and worked the microwave. He put the caramel mixture on top of the pretzels in the big baking pan. He mixed. I put the pan in the oven for 10 minutes. Three times, at 10 minute intervals we would have to take out the pan and Jason would carefully stir the pretzels to make sure they were getting coated. He did mix. He did lower his forearm and get burned on the hot pan. He did run out of the kitchen swearing off baking and the fair. He did come back. He did mix again. He did burn again. And he did come back again. He added the white chocolate and mixed. He let it cool. He tasted it and smiled. All was well. The fair only requires one cup of mix, so we had lots to share and eat. Result: First place, Blue Ribbon. Next year he says he will enter 4 items as a young Junior exhibitioner. One of them will be in legos.

My Mom entered her sunflower collage. It is an incredible, vibrant, and cheerful creation. Result: First Place, Blue Ribbon. And it hangs proudly in her kitchen next to countless other treasures she has made.

I entered Fruit Muffins. I could have gone with Jordan Marsh Style Blueberry Muffins. But nah, it didn’t tickle me. I saw a recipe for Apple Snickerdoodle Muffins. I made a dozen sweet vanilla and apple muffins. When they were hot out of the oven, I rolled them very gently in melted butter. Yup, they bathed in buttah. Then I lovingly rolled them in cinnamon sugar. Oooh and Aaaah. I got Jason to eat one right then. He ate it right up and wanted another for breakfast the next day. Result: First Place, Blue Ribbon.

I entered Healthy Choice Cookies. My Aunt’s recipe for Healthy Choice Zuke bread had won big a few years back, so I was intrigued again by the healthy choice idea. I found a recipe for a Carrot Cake Oatmeal Cookie which actually has some nutritional value as well as sounding delicious. I tried out the recipe and made them for the Back-to-School for teachers breakfast. They went over big. So I made em for the Fair. Result: First Place, Blue Ribbon.

I entered the Quick Bread category. This summer I was obsessed with this particular Double Chocolate Zucchini Bread that Fran Farmer highly praised when I brought it to her. So I made that, with all the love I have. And it had her zukes and our friend’s honey in it. Result: Second Place, Red Ribbon.

I entered the Coffeecake Category. Coffeecake has been a good category for me. This year I was keeping it simple and sticking to my New England Roots in my entries. So I made a Maple Walnut Coffee Cake. There was ½ cup of real local Maple Syrup in the topping. There was ½ cup of real local maple Syrup in the cake. It was loaded with syrup and walnuts and butter. Result: Second Place, Red Ribbon. I was picking up the ribbons and clearing up the goodies at the end of the fair and I got to talking with the lady who won Blue! She was packing up her food, not throwing it out as I did. She said that this year as it had been such cool weather, the cake would still be good and she always ate hers. No Waste. So I packed up the cake and brought it to my crocheting friends. They ate up every last crumb and awarded it their own blue ribbon smile!

I entered the Homemade Chocolate Cake with Vanilla Frosting Category. This was a new category and meant to be. I had Jean’s Chocolate Cake (the only birthday cake you would ever have, want or get in Wessy) and the Henry Sugarhouse (Wedding Cake) Buttercream frosting recipes. I had never paired the two recipes. But the moment I saw the category, I knew. I made a big bundt cake and planned out my frosting tips for the best effect. I got worried. All the entries had to be inside a plastic bag when we submitted them. How and why, would I put the frosted cake in a bag. I wondered. So I put the cake in my big covered cake pan. I packed bags and saran wrap and chopsticks which I could try to tent saran with, if needed. I brought the lot to the fair. I asked the head of adult exhibits what to do. She laughed. They had not even thought of that. But of course one couldn’t bag it. It would stay in the big cake pan for the duration of the fair. Result: First Place, Blue Ribbon and the big Purple Ribbon. Let me explain. One year at the fair I got a couple blue ribbons and ONE HUGE RED Ribbon; it was for Reserve Champion. I didn’t know what that was. When I asked, I found out. It was second place in all of adult baking. Of all the first place goodies in all the categories, mine was the second best. That was so cool. But of course, I set my sights on the BIG PURPLE ribbon for Champion. Every year since, I have told everyone how I want that Big Purple Ribbon. And every year I put my entries in on Thursday. They are judged that night. And every year I have to wait until I go on Sunday to get my results. Friends go and know, but never tell me the results. I wait and wonder and wait and then see. Not this year. This year, a friend posted my chocolate cake on Facebook with a BIG Purple Ribbon on top. I didn’t know how to feel. There it was! Success. But it was not Sunday and I was not at the fair and this was not how it was supposed to happen. How was I supposed to feel? I asked Jason who looked at the photo and simply said, “Happy Mom, you won.” He kept it simple and got me back on track. Then my friend on Facebook asked me what Reserve Champion meant, because that is what it said on my ribbon. What? What was that she said, reserve champion? I told her it meant second place. But that was inconceivable to me. I saw the Big Purple ribbon with my own eyes. I spent hours googling what the ribbon was and every time it came back that it was Champion level. That is what I had wanted. That is what I saw. But I knew my friend. If it said Reserve Champion, that’s what it was. That was reality. I tortured myself in this debacle til the next day. And Sunday, I saw it for myself. There was a small purple champion ribbon on the other lady’s apple pie. And there was my big Purple one. Around the hall I saw other small Champion ribbons and other Big Reserve ones. I left the barn still confused. I had to muster the courage to ask what the ribbon meant. I re-entered the Hall and asked the director of Adult Exhibits what it meant. So here it goes, The ribbon company messed up. The Reserve Champion ribbon should have been red and big. The Champion ribbon should have purple and big. So I had won reserve champion, second best in all baking again. And I had won that BIG Purple Ribbon that I had wanted for years. Ha! Now I have to be more specific. I have set my sights for next year. I want the BIG Champion Ribbon, full stop.inage-4a-for-9-3

I entered Granny Square Afghan in Crochet. I had started this blanket at Easter time, endeavoring not to buy any new yarn. I was inspired to make an entire, rockin beauty of a blanket with all the yarn that I had accumulated from friends, in the attic. The colors were bright like an Easter Basket, but progress was slow. Summer came on and I was determined to finish it for the Fair. I confess that I did buy the pink yarn around the edge. I had to. It needed it. And then as I neared completion Mom asked me who I was going to give it to. Surely I had enough blankets for myself she said. And true, I did. And all the September birthdays that were upcoming already had their gifts lined up, except one. My godmother/teacher’s second daughter, would be an official teenager on September 12th. And she loved pink. I checked with her mom that she would not find the blanket offensive as it was homemade. Mom said she would love it. And so it found a home. She actually saw it at the fair and told her mom it was beyootiful, without knowing it was hers already. And 13 years after first meeting her, I had something to offer her, from my heart. Result: Second Place, Red Ribbon.


I entered 3 photographs. We have a photo of Jason at 7 or so months old, propped up by the pumpkins at Howe’s Farm. He is wearing a sweater Granny knitted him and a red sox cap that my dear friend, from the wedding cake making day, had given him. I love that picture, but didn’t have it hung in this house. We matted it and entered it. I took a photo this summer in Wessyfoo, on the day I had lunch at Red Rose with the survivors. It is a close up of a bee on a purple bee balm. I love it. I matted it. I took a picture of Jason jumping into the pool at Wessyfoo this summer. I caught him mid-air, tucked up for a cannonball. We love that picture. I matted and entered that one. Results: No ribbons. Even better 3 newly framed pictures in the dining room and kitchen. The best. The fair was great again this year and we definitely enjoyed. The smiles, successes and surprises of this year’s fair are past.

Now we are fully into the new school year and focused on making the best results we can. Our new Superintendent surprised me and definitely helped me focus on what’s important this year. She started the year off differently than ever before. We got to see Liz Murray as a Back to School Celebration for the whole City of Worcester School folk. Amazing. Talk about paying it forward. The idea of “What if…?” plays a part in the practices of my today that my future self will thank me for. It is not my idea. Let’s be clear. At a school professional development a few years ago, we were treated to Liz Murray. This year she was back for our entire staff of school folks, right before school started. You might know her as “Homeless to Harvard” lady. The message is so simple and so true. Her youth of hardship and homelessness has not steamrolled and snowballed into waste and resentment in adulthood: quite the contrary and quite a hero of mine.

Her loving parents were caught up in the disease of addiction. They developed, and later died from AIDS. Her mother taught her to dream, but Liz’s life afforded her no real pursuit of those dreams. There was no daily practice of activities which are part of a comfortable today. There was no skill set, well-rehearsed to guide her to a happy future full of the satisfaction of achieving her goals. There was no future.

Her point to those who work with children is that for kids who live in the immediacy of crisis 24/7, there may be no hope or dreams. These children will look into our eyes to see who they are. They might not know that they are gifted and talented and loved. And if I can give that very deserved gift to my students, will I? I will. I can and so I will. That choice and practice, makes me happy today. And I believe that it will only enrich who I become to practice what Liz teaches, everyday.

For Liz, without parents who could parent, she lived on the streets of New York for several years as a teen. She stayed alive. Amazing. She survived. A miracle or… And when her “aha” moment came after her mother died, she chose to follow her “What ifs?” Liz used this idea to chase and achieve her dreams. Standing at her mother’s grave, realizing the waste of a brilliant, loving woman, she started asking questions. She said, “what if I went back to school? What if? What if I got straight A’s? What if? What if I went to Harvard? What if?” And in the hope created by that very simple practice, in the determination fueled by her mom’s death, and with the help of her peeps, she found a life of happiness. (I encourage you to watch this talk of hers if ya have time. https://www.bing.com/videos/search?q=liz+murray+video+&view=detail&mid=45F19A0BA194A87080A445F19A0BA194A87080A4&FORM=VIRE )

I started the “What ifs?” with my students this year, as a way of feeding hope and dreams and inspiring dedication to good practices. They are so worth it. I have two cupboard doors that have been painted to be whiteboards. I went first and shared a personal “what if?” that I believe will help an important relationship in my life, if I practice it. I chose an orange marker and wrote my hope and told the kids that if it is there every day, I will see it and read it. And I intend to do it today, so that Rachel of tomorrow will be the better for it. I left the marker and went on with the work of the day. My kids don’t have to hope. They don’t have to pick up that orange marker. It was not a required task. They know that. It is their choice. They like that. And little by slow, the doors are being covered with “what ifs?” Example: “What if I write as neat as I can every day? What if?” The author of this wants to be an artist. He needs supplies. He saw a drawing pad that a fellow student had earned and asked if he could have one too. I asked him to identify something he “COULD DO” that would make him more successful in school. He said that he “CAN” write a lot neater. I agreed that his work would score higher if we could decipher it. We laughed. We agreed that if he committed himself to the idea and practice of just this “What if?” then he would most certainly earn the tablet. And so we encourage each other in striving for success. In our room, we are safe. That is what I strive to create. That is what I want to be for my students, a safe anchor. But I also want to inspire and support a flight into the pursuit of “what ifs.” I want us to do what is possible, and then go beyond. So we are trying a new practice in positive action, together. This is a new practice in a new year. I am hopeful and I am inspired.

I am also exhausted. There is so much that I get to do, want to do and have to do. And that is just at work. The same goes at home. And I go, go, go. I do, do, do because I can and I want to. I definitely deny that I should slow down and make the to-do list shorter. One of the things that I get to do and love to do is be a member of a board. I am a member of the American Heart and Stroke Associations, Central Mass Board for Advocacy. The head of the board is my friend Allyson who got me into this work and Blair who gets me going on the Heart Walk. Its’ members are an amazing collection of heart disease survivors and caregivers and nurses and lawyers and others. I am the lone Stroke Survivor. We all work to get the message of the AHA/ASA out into the community. We all want to end Heart Disease for our future. Anyway, I love this group. And we haven’t met in person in months and months. And so I really wanted to go. But the meeting was set for the Wednesday after Labor Day, in the evening, in a town that is 30 minutes away. I wanted to stay home and rest. But when I saw Allyson at Red Rose, I had told that of course, I would be there.

Since I hadn’t stopped to rest in weeks, I could deny the need. So I went to the meeting. I even baked for the meeting, of course. I wore a new shirt to the meeting. I wore a smile to the meeting. But under that smile was exhaustion, a budding cold, and some real pain, anger and humiliation from some struggles I am having dealing with Them and my Botox treatments. It was all there, under the real smile.

And that night, around the table with these professional friends, making plans to advocate for those suffering with heart disease in our community and arranging events that will help prevent heart disease in others, I lost it. I was there to help others. I was there to speak the needs of the stroke survivors who can’t, and I ended up melting down and crying over my issues. I tried not to start. I tried to stop. But the tears and the anger and the words poured out. Here I was advocating for others and I was denying my own medical care because of the expense. I had paid bills for years when I had money. I saved my “fight” for those who really needed it. I hadn’t filed grievances in 13 years. I was all better and wasn’t I doing great and I didn’t need help. And yet recently, I did file a grievance again. I had to try. I filed one over my Botox. And I lost. They wrote back that they appreciated my sharing my issues, but here were the regulations listed on page so and so of my Member Handbook. I was so humiliated. I see myself as a regular hardworking wife and mom. I should be able to pay the bills. I shouldn’t need the treatment at all. I should be able to handle this on my own. But the money I owe for spring Botox, remains unpaid. The money for the upcoming treatment is due. And I choose to pay the mortgage and go back-to-school shopping for Jason. The money isn’t there and yet the problem still is. I sat at that shiny wooden, boardroom table with those good people and I cried. I lost it. Through gritted teeth and with my jaw tightening up and making my speech slow and sloppy I dumped out my problem.

When I looked back at my binder to write about September in 2003, I was shocked and saddened to see what a replay of this month I am having now, 13 years later. My feelings of being humiliated by Them and feeling less than and being angry at my stroke are right back, fresh and raw and savage within me. It is hard and painful to look at the binder and remember and relive my life then. It hurts to see how bad things were and the pain I was in. And yet, I am proud of me. I am in awe of what I went through and the actions I took. I am grateful that I never truly gave up, for good.

But I am not back then. It is 13 years later and I dumped my problem with friends who love me. I have my stroke to thank for these friends. I would never have met them and be doing this amazing work if it weren’t for my stroke. If it weren’t for my stroke, I am not sure I would have ever learned how to ask for help at all. So that night last week when I spilled my guts, that was not my doing, for sure. (My stroke and my Goddog are behind it.) I had worked so hard to bury and ignore this issue. I did not want to talk about it. But it came out. It was meant to come out. It came out and I got help. It came out and I was not alone with this problem anymore. It came out and I lost the humiliation feeling. The anger at myself and my stroke left. It was replaced with hope and a plan of action.

My friends around that table listened while I talk, even though they were late getting home to their families. They told me that the pharmaceutical company that makes my Botox probably had a grant program that helped patients like me. I didn’t believe it, but I listened. The nurses told me I had to make more than one appeal. They told me to keep filing and I would get results and get heard, but not if I took the no and disappeared. They told me I was right to be angry and they were angry for me. They hugged me and told me to have hope and do what they said. Blair told me that he would call me the next day with numbers and help me put a plan into action. A lovely lawyer friend told me, “let us help you.” She meant it. I went home to Tim and Jason an hour later than expected. But it was ok. I was ok. I was better than ok, I had a plan. I was fired up and my sleepy son and a bit worried husband knew it. But I was fired up with hope for our family and for my health. I was supported by these incredible folks who had answers for me and truly loved me. Tim said, “Let them help you. You help them so much. Let them help you.” And I heard him. He was right. And Blair called back the next day with a plan. I would have to take action. It would be work. And he said that it might always be a nuisance to negotiate this. But it should not be and would not be something that I lost sleep over, worry alone at night. There would be a plan and I would take the steps. I had help now. I said I was still embarrassed by my breakdown at the meeting. He told me, firmly not to be. He was glad I had shared. He was glad I had told them. He said “Rachel, if we were with you and had a big problem, and you could help us, but we never shared, how would you feel?” I told him that I would be angry with my friends for not letting me help make things better. He said, “right.” I took a deep breathe. In that quiet moment, I knew. I knew he was right. I knew that I would find answers to this problem, and it might even go well. I realized I do help others, because of my stroke and because of me. I knew it was no mistake or accident that I had melted down at that meeting. I knew I was loved. I knew Tim and Jason were my anchors, but that there were others that had answers and could and would help. I knew I needed help. I knew I wanted help. And it got it. At the end of the day, I know I have hope. I know I am not alone. And here is a tune that proves it. http://www.bing.com/search?q=Rascal+flatts+shine+on&src=IE-SearchBox&FORM=IENTTR&conversationid=


August 7th 2003 & 2016

One of those, Middle of the Night, and I can’t sleep, trains of thought:

I have a bunch of friends who run marathons. And I think they are nuts. They are not 20 something girls. They are 30, 40, 50+ gals who love to run, evidently. I think that’s cuckoo cray-cray. They claim that running marathons makes them feel exhilarated and empowered. OK. They claim that the long hours of training and perseverance to train and endure makes them feel so proud of themselves. OK. I have heard what they said for years, but still thought they were off their rockers. Today I have a new appreciation and respect for their passion and dedication to running marathons.


 I think living with stroke is like running a marathon. It is a really long road of training, goals, and recovery. The challenges and rewards are everyday. They never stop coming, if you are willing to do the work. And by work, I mean life work. What goals do I make today? What action do I need to take to achieve my goals? Where am I stuck and suffering? What action could I take to be free again? What have I said I would do? Do my words match my deeds? That is what matters. Life work means that every day I GET to be here, I begin again to do my best. It means that I am conscious of my faults and weakness. It means that I seek help and follow through on fixing those things that don’t work and stand between me and my goals. It also means that I credit and value my success. And honestly, I have done good.

I look back at where I was and where I am now. And I know the work it took to get there. I am proud. I love my life today. I want to keep going down the road I am on. I can’t wait to see what is around the next bend. And the most amazing peeps are with me every step of the way. I know I am up for whatever challenges come to me, I mean seriously LOOK WHERE I WAS. Look at what I have been through. I’m smiling at myself right now. I think my marathon runner friends feel this way. Cool.


GODDOG days of August Coffee Tawpic: Image-1-for-8.7

To me, this quote means that I have to be open to life and it’s magical moments, all day and every day. It means that if I seek this way of living, I will find magic in the most obscure, mundane and unexpected experiences.

Bear with me friends! Selecting this quote for the blog and thinking about it for weeks as I write, has led me down just such a magical, mundane road. As Jean Granny said, “life is crazy.”

So I just googled Jonathan Swift and found him to be several hundred years older than I thought. An Irish author and satirist, Swift lived from 1667-1745. Centuries later, his words still matter and make sense, to me anyway. For two weeks, I have been thinking about his words and their message. How do I live life well enough to truly get the best out of each day? The importance of each and every day, is a concept that I live by, post stroke. But the challenge of evaluating for myself, how I do it, is a complex puzzle to consider. (And I definitely tend to over complicate things, anything.)

Several pieces of the puzzle have fallen into place recently. The most recent came from Jason. The radio was on as we headed to Rutland State Park for swim and sun before spending the afternoon working on my classroom readying. Jason heard a tune and asked me to turn it up loud, this more modern interpretation of Swift’s quote.

I never thought about this song beyond a great refrain and beat.


But with Jason’s help, I picked up on more in Bonjovi’s words. I heard Swift’s message in there. I hear the same, in both. And in the lyrics, Bonjovi gives credit to Frank Sinatra for sending the same message years before.   https://www.youtube.com/watch?v=A6gBw-tK82E

From 3 very different sources, I get the same encouragement to be aware of the gift of today. And maybe that awareness is the point…Hmmm


While there are random experiences (that I try to cultivate) that come upon us unexpectedly and contribute to my good life, there are also those familiar pillars that have always supported me and still make life so rich. Living all the days of my life, has some constant, stable anchors. Thank Goddog. One of those anchors is Red Rose.

Have I told you my RED ROSE story?



I was born in Springfield Massachusetts; me and Dr. Seuss and other such fabulous peeps. I don’t have to go back so far, so dramatically in time, for this story, but I am channeling Sophia from the Golden Girls at the moment and she always has a good story intro to lure ya in.

Picture it, Springfield 1972, a girl is born and grows up atop a hill, overlooking the Connecticut River. In 1978 her mother moves to Worcester and the girl begins a new chapter. Every weekend her father picks her up on Friday, after school. They drive the Pike from Worcester back to Springfield. At the Toll Booth, the father gives the girl a quarter and she goes to the phone booth at the edge of the Turnpike Parking Lot. There is only one phone number she dials, every time: 413-739-8510. Red Rose answers every time and she places the order: Party Size Pizza please, half peppers and pepperoni and half black olives and hamburg (or mushrooms.) The girl gives the name Scanlon with her order and is told that in 20-25 minutes, it will be ready.

Back in the car, her father drives the girl over the highway and through downtown Springfield. They travel down Main Street past the Po’ Office, as the girl calls it, the Peter Pan Bus Station, Bay State Waste (as the family calls it), the City Square and on into the South End. Her father parks and gives her a big bill to pay for the sacred yum yum. The girl goes inside the beloved brick building with the white, black and red sign. There is a long wall of big glass windows that look directly into the kitchen. The ovens line two walls.   There is a kitchen aid style mixer making dough. Its’ bowl is the size of the girl’s bathtub. Several men stand at big tables, shaping masses of dough into crust, adding sauce and toppings and cheese, and supervising the baking in the ovens. It is the warmest, happiest, and safest place on earth.

At the register, she gives her name and pays for the pizza. When the change is securely in her pocket, they hand her the order. A rectangular box as long as the girl is tall, rests in her hands. The steam comes wafting out the edge of the box and the smell is heaven. Same smell every time. The best smell every time. The heat of the pizza almost burns her hands, in a good way. The box sits in the back seat or on her lap for the ride home.


Knowing what is inside and having to wait til she gets home is torture, exquisite torture. But the pizza is so worth it: The perfect combination of crust and sauce and cheese and toppings. Ambrosia! And every week, for every season and occasion, there is Red Rose. Years pass, decades too and Red Rose is there for the girl ,become woman. During college she travels back to Springfield for Red Rose, even when her dad is in England and the rest of the clan in Wessyfoo. The pizza must be had. It’s that important.

And then in 2003, STROKE strikes the woman. She can’t eat for two months and then can’t travel for what could be a year. Red Rose is not an option. It is outside her comfort zone, the county. She must be safe and stay near her hospital. The focus is waiting for the next stroke, being the best patient for her recovery and the work of daily survival in a world and body that are totally foreign to her. It might be a year or so later, when the woman gains strength and courage to drive the Turnpike to Wessyfoo.

That day did come when she ventures down the Pike. Terrified and trembling she makes her way. And as she passes the Springfield exit, a number comes into her mind and out her mouth: 413-739-8510 resounds clearly and without hesitation. Of all the things to remember for 30 years, and all the information to be buried in STROKE trauma, and all the important things that should be recovered, the number to Red Rose is what comes out!

At that moment, our survivor saw it as a big signpost in her recovery. Here was something and someplace special to her as a child and woman Pre-Stroke, and apparently it was significant now. It was that important in my life. It is that important in my life. There are some places that endure, and Red Rose is one. There are some special people that endure, and our survivor knew she was one of those too.

When the survivor met her match, in Tim, she told him of Red Rose and its’ importance in her life. She took him down the Pike and past where the phone booth was once, at the Springfield exit. She took him straight to Red Rose. That was the ultimate test of their compatibility and enduring future. Would he pass? Of course. Tim knew a great pizza, as well as he knew a great partner, when he met them. Our survivor knew that this man accepted and loved her wholeheartedly and for life; for good and bad, with stroke and stubbed toes, with big changes and little ‘uns, and for her traditions and constants. This moment of truth, or test of marital compatability based on the love of Red Rose might seem over the top. But the pizza is that good. (And our survivor was pregnant with all the overpowering hormonal and spiritual changes that entails.Red Rose was of course, her craving.)

The next time they traveled the Pike and passed the exit on the way to Wessyfoo, he uttered that magical number from memory: 413-739-8510. The survivor cried with joy and the two became engaged.

The survivor married her anchor, in Wessyfoo that summer. And what would be the appetizer? Red Rose, of course. Her uncle went to Red Rose and secured two party size pizzas for the wedding. And the family and friends enjoyed. But the survivor bride and anchor hubby had not gotten their fill on that big day. So that evening, on their way back to Lovely Worcester; Survivor, Anchor and Lola Goddog stopped at Red Rose for their own honeymoon pizza. Their new life and family was off to a blessed start, with proper priorities established.

In the past 8 years, Red Rose has become beloved by the son, of course. It is the place they go to as a family when Granddad is here. It is the special trip they make when Granddad is coming home, for the proper celebratory welcome-home pizza. It is the only destination after a day at the Stroke Survivor and Caregiver Conference in Springfield.


This constant in girl, woman, survivor, bride and mother’s life, is a big part of loving and living life today! THE END of the Red Rose story, sort of.

This week in 2016, proves to be no different. (Thank Goddog for some constants in this ever-and-way-too-fast-changing world.) Very early in the summer, Red Rose called me again. The invitation came in the form of a dear friend and life-saver. When I reached out, through email to the American Heart and Stroke Association some 10 years ago, for help, this Wonder(ful) Woman reached out her hand to me. She took a personal interest in ME. Somehow, at a time when I was riddled with fear and anger, she made me feel important, special and valuable.

For my part, I think I was finally convinced that I had to start living life. I had to live, regardless of how long I might or might not have, and with awareness of the curve balls life WOULD throw at me. I had stopped living each day, waiting to die, for a long time after my stroke. And I don’t think that really counts as living anyway.

I was also convinced by this point, that the Stroke had changed and altered me forever, as all life experiences do. Whether we acknowledge that basic truth or not, it happens. I was ready to incorporate the label “Stroke Survivor” into MY definition of Rachel. I was beginning to embrace a way of life where I worked really hard, played really hard and loved the hardest. I had to find a way where I didn’t have to be in charge, and wasn’t focused on results that were way beyond my control. I was ready to be happy again, but not real sure how to do this with stroke.

So Wonder(ful) Woman, met a Stroke Survivor and seemed to think I was pretty cool. Even though I had reached out to her JOB, I never felt work-related to this Wonder(ful) Woman. I came to see myself through her gentle, loving and respectful eyes. I was a survivor. I was smart and had a lot to offer the world. It felt so good to ask for help and then get it and then (shock of all shocks to me) feel that I could help her and the AHA/ASA.

She initially gave me support and direction with some specific, work related issues. Her encouragement and resources really made me feel stronger walking back into teaching with confidence, versus self hatred and embarrassment. Over time, she opened me to new experiences that helped me, her, and the Stroke community. One of the first things she did was get me to start speaking at Stroke Survivor and Caregiver Conferences. In me, she saw someone to get up in front of others and speak, inspire and educate. It was a total 180 from how I lived with stroke previous. This was not the job for someone who hides from life. And I rose to her vision of me! What a gift to trust that she was right and I could do something this new and challenging? What a rush to be with my peeps!

When my classroom needs supplies, she sends a box. It is like Christmas in my classroom. All the desired essentials just appear: masking tape, markers, paper, crayons, pens. An unexpected bounty. Wonder(ful) Woman introduced me to an amazing group of AHA/ASA peeps that also became friends, real friends to me. And I have something to offer them. She got me involved in advocating for Stroke related Bills by going to the State House for Stroke Lobby Days. It is absolutely great to be a part of what makes my state tick. I can use my voice to speak for those stroke survivors who can’t.

This summer, she would give me another gift. This time, Wonder(ful) Woman made me realize that I could help Stroke Survivors who are only a couple years out. I guess I can be a power of example of life after stroke. I am 13 years out and better than ever. I am coming to believe that I might be important for their recovery. And she made me see that, because she saw it in me… But I am getting ahead of myself.

Wonder(ful) Woman emailed me in June and said that she wanted to hook me up with two younger stroke survivors from the Springfield area. She kept it simple, which is so helpful to me. These two woman were early in stroke recovery and it would be good for us to meet. Maybe they would want to get involved, as I have and it would help them too.   We would meet for lunch. We would meet at Red Rose! It is convenient for all of us involved, geographically speaking. But in my heart I know, Wonder(ful) Woman simply had to have this deeply spiritual experience after hearing me rave about it for close to a decade.

Stroke is not always a joyous reason to gather people together. But paired with Red Rose and good friends, it was set on my calendar as a high point of the summer. (For one day, I would be a lady who lunched!) All summer I looked forward to the day and smiled when I thought about it. I think she picked Red Rose to make me feel good. I know that is pretty self-centered. Isn’t that crazy the way someone can do something so simple and seemingly insignificant, and it means the world to another? Aren’t I blessed by friends like her? It makes me realized how much I have changed that I even think this way. “Life is Crazy,” to quote Jean Granny.

Anyways, the day came last week to meet. That morning I changed my outfit 4 times. I was keyed up about meeting these younger ladies. I hoped that Wonder(ful) Woman thought I was doing well. I hadn’t seen her in over 2 years, other than Face Book. Jason and Tim drove too. We all went to Wessyfoo and the mens went golfing. I had a quiet hour to myself in the sun and pool. I enjoyed the time to breathe and swim and watch the trees. I followed a butterfly through the day lilies for a while. It was a gift to focus watch the butterfly because, again I was getting more and more nervous. In the meditation of the garden, answers came. I was nervous to be doing Stroke Stuff without Tim and Jason. I have been living with my stroke and doing all kinds of Stroke Related Advocacy Awareness Stuff, WITH MY FAMILY. We talk stroke at home and do stroke stuff together in the community. It is part of our family fabric.

But not today. Today I was on my own and I was scared without the safety and anchor of Tim and Jason. I felt better the second I acknowledged this truth. I took a deep breath and my shoulders relaxed a bit. I started to get really hungry for what I would be having for lunch! That was a good sign. I reminded myself that I was safe on my own. And I wasn’t going to be alone. I was going to a safe place, with a dear friend, to meet new friends. I would tell Jason and Tim all about it when I picked them up at Wessyfoo afterwards. (And I would bring goodies from Red Rose with me, of course.)

I drove from Wessyfoo to Red Rose over the roads I’ve known my whole life. I played music in the car, a bit louder than I do when I have Jason. Traffic was what it was. But I got there with five minutes to spare. I went to the register and told the lady that I was there to meet 3 ladies. And beyond her, I saw Wonder(ful) Woman standing and waving me over. And when I reached her and her big hugs, I saw my AHA/ASA mentor guru. She was there too. Suprise! Bonus! More Hugs! It was so great to be with them in one of my favorite places on earth. Next I was introduced to 3 extraordinary women. Two were stroke survivors like me, and the third was the mom-friend-driver of one of the survivors. I got to sit and look and talk and listen to this powerhouse circle of strength and grit. We took care of ordering lunch straight away. Thank Goodness for that. My mentor and I were determined to make that happen soon. I do better when I am not overly hungry. And if I am nervous, food is good. It helps calm me down and occupy my mouth, which can say stupid things.   We ordered the (blocks, yes blocks of) Fried Mozzarella for an appetizer. I was not sad at all that I ate a whole one and got to take one home to Tim. They are out of this world! The house salad, I had never had. Health-minded folks at my table other than me, ordered it. And it was an incredible salad. The Driving Survivor, who just got back her license and drove to the restaurant on her own, remarked that she could eat just the salad, it was that good. She said she might fill up, just on that. I chuckled and agreed it was good. But I told her that I had separate stomachs: sweet, savory and Red Rose. I had a lot to go, before I was full at that table. She laughed hard and I knew it was a good thing that she laughed. Later I was talking about the blog. I noticed that she didn’t look around or make much eye contact. At first I thought maybe she didn’t like me or want to be there. I quickly realized that this was probably not the case. Her ways were probably about her and her recovery. Her life had been thrown upside down and inside out. She had been the caretaker wife and mother and then stroke turned the table. I cannot even imagine how terrible that must be. Her road is difficult in ways I cannot imagine.   She looked so beautiful, serene and together sitting next to me. And at the same time, I could see that she had no idea who she was anymore and that scared her to death.

At one point I had commented that I was finally ready and proud to label myself as a stroke survivor. It meant I was stronger than anyone and meant for great things. She paused eating and I swear, she moved a bit closer to me. Then I babbled about accepting my stroke whole heartedly. I mean, the change had happened. I had to deal with it. I loved me now, because I had a fresh start and am recreating myself. Children in school have that clean slate of life ahead and I think I do too.  Stroke gave me that gift. She totally heard that. I could see her grabbing on to this new idea and putting it away to think about it later. I was babbling about making my stroke work for me. With all we had been through, I was going to make stroke be a money-maker and work for me for a change! She laughed hard and said she knew I would do it. I would make it happen, she said. Her confidence and laughter lifted me up.

The large pizza we ordered was more than enough for me to eat 4 pieces, some to eat 2, the youngest survivor to eat 1 and me to end up taking home near 10 pieces of heaven in a crust. The entire table agreed that any leftovers were for me to take home. I was so grateful and so touched. I told them the truth, it saved me from ordering extras, because I certainly couldn’t go home empty handed from Red Rose. They all laughed.

The Youngest Survivor was there with her Mom-friend-driver. Both were lovely and sweet. I was bowled over by how well she was doing just two years out from her stroke. She hadn’t been able to walk after her stroke. Of course, they told her than she wouldn’t walk. But I sure saw her walk. Ha! Amazing. (But I come to know that Stroke Survivors always amaze me!) Our youngest Survivor was living on her own, but wasn’t able to drive now. She had got her license back, but had health issues and it was taken away. (That kind of set back must be so frustrating and humiliating. She seemed calm and accepting in a way that I never was poised enough to show. But again there was definitely anger and sorrow under the surface of this sweet, young woman. She was avidly seeking medications and programs that would stabilize her so that she could be more comfortable, and be able to drive. Her speech was clear, yet careful. She sat proud and her eyes and face and hair beamed with youth and beauty in a way that I am sure I NEVER did when I was 2 years out. One of her stories, sticks in my heart. She has spasticity in her hand. ( I was talking about the spasticity in my face. I was talking about Botox that helped and stress which didn’t. She brought up this story.) Her mom-friend piped up that the spasticity used to be really bad. She tried to do our Youngest Survivor’s fingernails one day. The hand was so tightly spasmed into a fist she couldn’t open it to paint the nails. I imagined her pulling and tugging at the young survivor’s hands with all her might and getting nowhere. They were laughing now telling the story. I laughed too. It was great to laugh with people that understand. The Youngest Survivor said that at home, alone, when she is hanging out and watching TV, her hand is open and relaxed. But when people come at her, for a hug or to do something to her, or when she is in public with strangers, the hand closes. It locks up tight, stiff and closed. I didn’t have a quick retort for this. I took a breath and looked at her. I let someone else pick up the conversation. I needed a minute to think about our Youngest Survivor. When she was alone, and safe, and calm her hand was open. And when people came too near, she closed tight. She had the words to beautifully tell her place in recovery. The story said so much about what stroke does to the WHOLE person. I was like that for years, and certainly can be that way now. There are times when my face whacks out and I can barely talk but not for some medical related stroke causes. The muscles are in spasm, but it is because I am feeling uncomfortable or angry or sad. The spasm is my body’s defense mechanism now, at times. The muscles tighten and protect me from pain, sort of. But I never had words back then, in a public setting which so clearly said that I felt scared and alone. I wanted to be touched, but didn’t you near me. My body had betrayed me completely. Stroke took away so much. It locked me up tight.

I saw right then the powerful connection between the physical, mental and spiritual parts of our Youngest Survivor. And I saw it in me. And I saw it in everyone. Whatever we have, and we all have STUFF, our entire being is affected. (Our society seems to like to keep us departmentalized. We go to our job and work. We have our religion, clubs and hangouts. When we are sick, one type of doctor fixes one bit and a different doc addresses another bit. All of our bits and bobs are treated separately. I don’t see this way works very well, especially for young stroke survivors. We have a whole lot of life ahead of us. But we need help and we do things differently than before our stroke. We have changed. The world and its’ systems need to change too. But that is probably another story for another day.)

At the end of lunch I was pumped. The experience of meeting these New Survivors and getting together with dear friends had filled me up. I had a rush of new thoughts and ideas. Everyone left and headed home, but Wonder(ful) Woman walked me to my car and we chatted. We hugged and caught up about our kids and careers. Marvelous! And then she gave me the kicker. She told me that the Survivors needed ME. I was happy living life post stroke. They weren’t. I thought she was just getting together a mini support network. I knew that in the two hours we spent together, they had helped me. She said that I always put a positive spin on Stroke and life. She loved that about me and valued my energy in her life. She said that they NEEDED me. They were not happy. Their lives had been shattered and their pieces were not picked up, yet. And I could see that. They looked a lot better than I did at that time in my recovery. But their hearts, I could see if I opened my eyes, were shattered. Seeing that kind of pain, rage, and sadness is tough. It is a very dark place that I know too well. I could see that in them. . I told Wonder(ful) Woman that I wouldn’t go back to that time in my recovery for a million bucks. It sucked. There was/is no nice way to put it. She could see that.   They needed to see where they could be at 13 years out. They needed to laugh. She was saying that my life, that I, was an example for these two spectacular women. I have the privilege of growing older. 13 years out from a big stroke, and happy, at age 43 is a gift. And while the role of wiser, elder and mentor was something I thought was way down the road, I guess the moment is here. I guess I have some Sophialike-Golden Girls- ways about me. Just being me, I can help. I have a hard time seeing that. But for Wonder(ful) Woman, I will try to help and do the homework she gave me.

On the way home to Wessyfoo, I played a familiar beloved album in the car. Good tune, with good messages, that have seen me through tough times. It is the album I play when I go to funerals, to be honest. Weird, but true. I have gone to too many funerals in the past 13 years. At each one, I wonder why they had to die and I get to keep living. (My stroke does make me wonder/marvel at this second chance I have been gifted.) I honor that I have been able to love and be loved by these wonderful people. I suit up and show up. I can do that today. And this tune helps. (It’s also another take on Swift’s words.)




August 7th 2003

Coumadin levels stable for the past month. It is a pretty high dose every day, 12.5mg. But it is good that it has stabilized. I was right about speech. They cut me off, discharged me. I passed every swallow test they could throw at me. I was good. So they said I was all done. I miss Carole. I miss the work. And now I miss my jaw feeling good. It is starting to really get bad. I swallow fine. But my face hardly moves. The whole left side is freezing up. It’s hard to breathe during the day and hurts at night. My tongue feels so thick and sloppy in my mouth. I drool a lot. The tongue combined with the freaky slouchy face makes for speech like soup. It was nowhere near this bad right after the stroke. This is new. It’s gross. I am gross. I look bizarre and I sound demented.

I am trying to stay away from people right now, because it is so humiliating to be this way. I do visit with my teacher friend. She is so sweet to come visit me with her daughter. I am glad to have them in my house bringing their smiles and life for even an hour. I feel kind of like a grandmother actually. I mean, I feel old and feeble and have the young ones coming to visit me. It’s weird. It’s hard. I wish I didn’t feel this way.

I also spend time with my college sister/friend. We talk on the phone and make plans to see each other. She is taking time off from work as her daughter is so young. For some reason she answers my calls and we get together. It is a lifeline, those moments. I feel so accepted by her and less freakish. I feel safe with her.

Other than that, I am all business. My business is trying to deal with the big insurance company and downtown. My business is to try to stay afloat right now.

I had a Physical therapy evaluation this week. They say I am fine. Well, not exactly fine. Physical Therapy said that my muscles were spastic, which is common when you have a stroke. They said I had muscle tone and balance issues. They said that based on my re-evaluation, they would schedule me for 3 times a week for PT. But my insurance disagrees. I have exhausted my limit for visits for the year. I would have to pay for anymore help. I can’t pay and I am afraid I can’t do my job. There is no money. I am not working. I can’t. I am flooded with bills for co-pays for speech which I thought I didn’t have to pay. They say I do. I am appealing.

(I did get a letter of APOLOGY today from Them. But it is about the problem with approving speech therapy way back in June.   Dr. S had said that it would work out. The letter is dated June 18th, but it arrived in August. Hmm. They “apologize for any inconvenience that I may have experienced with the Medical Management Department. The Director informed…me…that speech therapy services are reviewed and evaluated based upon the medical necessity throughout the course of treatment to ensure quality of care.” So I was right. I can get more speech therapy covered and paid for as MY DOCTOR says I need, to get better.

I feel a bit crazy. I mean, their big company fought me tooth and nail and made me feel like they either wanted me dead or I thought I was crazy to think I needed speech to get well. And now, that big company says sorry. I know the stress of this was not very healthy for me. I don’t really care anymore about them or me, but I know stress is bad. I have always heard that stress was bad for my Jean Granny when she had her stroke. I saw the same thing said on TV for people with strokes. But they must have meant old people with strokes. Stress is bad for them because they are weaker and feebler. I guess if you have a stroke at 30, stress is fine.

But I don’t think it is right. And what about those people in my hospital, the ones in my unit, who are elderly and had strokes? What about the people at “the Home,” who couldn’t speak up for themselves because of their stroke? What about them? They can’t fight for themselves. It is not right. I don’t know much, but I know that.  I guess, in this time and place, stroke is better for old folks because we are expecting them to die sooner anyway. We say that they have lived a full life already. Somehow it is more acceptable?   But I am not old. I can speak up for myself. And right now, I can’t find anything else I am supposed to be doing.

So what does the letter of apology from them do for me now? Not much. That was about then. This is now. The system seems to forget/ignore from one day to the next. And I know by now that it will be a very different story for physical therapy. I know it will be a fight. What am I fighting for?)

So I spend about an hour a day on the phone with them, the big company. I get transferred all over the place: Patient rights, Rehab Services, Consumer Affairs, Medical Pre-Approval, Authorization, Authorization reviewer, my hospital, my neurologist from heaven and my PCP. I keep really good notes. I have bought a 4 inch binder to keep all my records, bills, and notes in.


I guess fighting with them is my job right now. I am going to start going into the medical library at my hospital. There has to be something in there that would help downtown and them take better care of me, cheaper. Why the F*** did they save me if they aren’t letting me get better? Why put $1,000,000 in to save my swallow, but not a couple hundred so I can walk and talk without looking like Jabba the Hut? Why? Maybe that medical library has answers. No one else does.

To discuss back to work, speech troubles, bills and extending the PT services, I saw My Doctor today. I told her what was going on. I let her check me over. I showed her “the letter.” I brought the binder. She made me feel smart, sane and strong, for about a minute. She saw the face mess up. She’s going to work on getting me the speech and physical therapy services. That is good. I told her I can’t go back to work yet. I am not ready. She told me to think about getting trained for a different kind of work or filing for disability! (I can’t even process that. I know she said it. I was there. But I am 30 freakin years old. How can she be talking to me about another line of work, when I haven’t even paid a tenth of my loans to become a teacher? And disability?????????? At age 30???????? I can’t even go there. Seriously, this isn’t happening. Can’t someone fix me?)Image-5-for-8.7

And Downtown says that I am fine, so I should come back to work for the end of the month. I’d rather shoot for that option right now, even if it is not realistic. At least that relates to me before 4/4/03. It’s something.

I say that to myself. But, come on, I can’t even talk. How can this thing get up in front of 6 year olds and practice the A,B,C’s when I slur and sound stupid. This thing that I am right now, can’t be an example of learning the English language! Don’t they see that? And I can’t move easily or with stability today. I can’t stay awake and talking and thinking and running the classroom for all day! I know they said I don’t need speech anymore and I am fully independent. But really? I don’t even know what I’d do all day with the kids. I can’t clearly remember what I did or how I did it. I can’t seem to make my head focus on teacher stuff right now. But I have to try. This face freak thing came on fast. If I got help, maybe it would go away. I need time. My job right now is to buy some time. I just need time to breathe and figure things out.   Everything is so cuckoo right now. I don’t know what to do. (I didn’t ask for this! Age 30 isn’t supposed to look like this! Why me? Please stop? Please go away?)

I did a good job on my speech and PT. I achieved goals in a short period of time that some seemed to think I would never achieve. I am good at that kind of work now. And it is not easy work either.  But that is not my job anymore. And I don’t see what downtown sees in me. I don’t see Miss Scanlon, the first grade teacher, when I look in the mirror. She is not there. So what do I do now?

I need help with work. I can’t do it right now. My Doctor says that I should take a copy of my medical records and she would write a letter and I can take the lot downtown and show them what is going on. Check. Wait and see.

I reached out to my union. I know they don’t owe me anything, but I am scared and I don’t know what to do. My medical records say that what happened to me on April 3rd was a big, bad deal. I was very sick. I am still not stable. I don’t think this is what healthy looks like.   But they want me to teach. Anyway, I called and talked to one of our leaders at the union. He had come to see me in the hospital. I loved how the nurses jumped around when his larger-than-life voice and broad swinging arms, rolled into my room. He had said then, that I was missed and that the city would take care of me. So I called him now and asked for his help. I need time. I need a break. (What if they fire me? What else can I do? I can’t do what I’m trained for. And I don’t want to do anything right now. What if I can’t stay in my apartment? It’s all I have. Who will take care of my babies when I go? Why can’t they just leave me alone.)


August 7th 2016

I had a really great, food day this week. (And yes, food makes my day.) I made rotisserie style chicken in the crockpot, swiss chard from Fran Farmer with lots of garlic, spelt grains and veggies and a creamy cabbage salad. I smelled the chicken cooking every time I came in the house during our busy day. And I drooled. And at supper, I didn’t eat.   My belly was all over the place and food was not gonna settle it. I was a bit dizzy too. Ick! It has been a hot day, not the hottest we have had. It was a very humid day, up there with the stickiest of the summer. I was in AC much of the day, except for the 3 hours before supper. I had gotten up way early, and stayed up, but not really any worse than other days recently. I had lived a normal day, like the rest of the humans I saw today.

But I am not a normal human, whatever normal may be. After supper was cleared away, and after Tim had washed the last of the mountain of supper dishes, I saw the look on Tim’s face. He hadn’t said anything. I had said right before supper that I was a bit overheating, that’s all, to explain my snapping words and slip slopping, clumsy hands. He hadn’t pressed further. And I am grateful for the breathing space. Right after supper, he asked if I was nauseous. I told him that I was, and followed up with, “that’s the only reason I’d miss a meal, even if I wasn’t hungry, and especially if it was yummy chicken. Again, he didn’t push me. But he was there, near me, strong and securing, keeping me safe just by being there. I stayed near him while I tried to gain my equilibrium. Tim is my anchor.

But in the quiet of the cleaned up kitchen, fan on, and lights off, I saw his face. I think he was scared and confused. I saw the look in his eyes and took a deep breath. I had to find words that made sense of my behavior. I had to make him feel better. Lately I have talked with him and really become more aware of how big a role my stroke PLAYS in OUR LIFE. Strokes are big with a capital huge, scary, terrifying, life altering events, for you and your spouse, even when you are 13 years out, and even when you are in good, stable health. This is where I am at now in my recovery.

Therefore, Tim is also impacted by this phase in my recovery. He hadn’t pushed me to explain what was wrong, but that didn’t mean he wasn’t worried. I saw fear on his face. If I was very suddenly off my very tasty vittles, something was very wrong. I don’t want Tim to be afraid. This is new to me, to recognize my stroke impacting him, in the moment. (It is big growth, with a capital huge for me to be a little less self-centered. I am kinda proud of that.) Somehow, I had to make him feel safe and not scared, now.

A number of pieces of a very difficult, yet surprisingly simple puzzle fell into place as I looked into his eyes and began to talk.

  1. I told him I guess I hit my limit on heat and humidity this afternoon for no special reason. I felt like my head was wrapped in Saran Wrap. I was kind of dizzy, goofy and light headed. (He looked a bit more confused.)
  2. I told him that I can’t regulate my heat. (He nodded. He knows that.) I said that I had noticed during the afternoon, and asked him if he was ok, because he was sweating and a bit red faced. He was fine, of course. Healthy people sweat when it is hot on a Dog Day of August! But my whole right side can’t sense the heat. It tells the uncomfortable, hot and bothered, left side of my body not to feel so bleeping hot. Chill Out!- says the right to the left. So in my head, the message I get is that I am not as hot as I really am. (I asked Tim if this made sense. He said he heard what I was saying, but really couldn’t identify with what it meant.)
  3. I told him that if I really didn’t “feel” the hot sticky weather, then I wouldn’t drink extra water or go near a fan or get into air conditioning, or do anything to help what my body was experiencing. I was denying it. It wouldn’t change the reality, but that was what I was doing. I wasn’t listening to my body and doing what a normal person would do to feel better on a hot, disgusting day like today. And therefore I would feel worse than the smart person who had taken appropriate measures.   I told him that as soon as I finished the big mug of seltzer beside me, I would definitely feel much better (He nodded and took a deeper breath.)
  4. (So I closed my mouth, closed my eyes and took a couple of deep and wonderful breaths.) I told him that I had finally stopped my normal mouth breathing and just taken a few great breaths. I felt better, clearer headed and relaxed a bit. I wasn’t nauseous. I told him that I had read a Dr. Mercola bit on the benefits of breathing through your nose. It had reminded me to make a concerted effort to do better in that area. I breathe way too much through my mouth because the spastic muscles on the left side of my face. Those wacky muscles that don’t work very well, sort of collapse my nose on that side and make it tough to breathe easy.

(I didn’t tell him this. But in the safety of that moment, I realized a truth about me. I try to be normal. I try really hard to be normal, for me. I have been breathing through my nose so much lately, that even though I don’t breathe very well, it is comfortable to me. It is known. It feels normal. I don’t feel freakish or disabled. I just feel winded and out of breath. In those walks around the block, I try to breathe through my nose. Every night, with my face throbbing in spasm, the ache keeping me from rest, I try to breathe through my nose. I practice. And then I want to cry.

The first few breaths through my nose are wonderful. I can feel my body relaxing and thanking me for a real dose of oxygen. And then it gets hard. I can actually feel the exact parts of my face that are f@#*ed up. I can feel a twinging of collapsing weak muscles under my left eye, near my nose. I can feel how different those pathetic, broken bits of my face are to the rest of the strong muscles I have. I hate that moment. I hate that feeling. In that moment, I guess I hate me. I am a fear ball again, back in 2003. I don’t work right. And in that moment, I don’t want to try. I just want to snap back to how I feel now, in 2016. I don’t want to be scared, feeling weak, and human.

But today I have to try. I am not back then. I am me, now. I survived and I thrived. I am strong. I can do this. I am safe. It will be hard. I won’t like it. And it might not get tons better. And yet, it might. I wouldn’t have this realization if I weren’t ready and able to try.   A survivor like me, has to try today, because we can and we do. Our standards, our expectations are higher when we are 13 years out. Beyond our fear and anger from STROKE, in our hearts we KNOW we are stronger than most. Strokes are not for sissies. Survivors are blessed with a backbone and resilience that most cannot imagine. I know this about us. I can’t explain it. But I know it. And today, I have to try.)

What I do tell Tim, is that in my frustration and disgust with myself, I avoid the tough-for-me-way-of- breathing and practice needed to make it better and switch to mouth breathing. I told him that on our walks lately I had tried to breathe only through my nose for the whole first block. I was focused on doing better with nose breathing, because I needed to. But after a block of hard work, I give up and switch to mouth breathing, my nose runs a snot river and I huff and puff loudly, through the neighborhood. Lovely. I told him that today, in an effort to be “normal,” I had taken the easy way out, as usual. I chose to breathe heavy through my mouth all afternoon. And my result was the same as any idiot who breathes that way. I didn’t get enough oxygen and made myself sicker and sicker. (He smiled. I asked him if what I was saying made sense. He said he was listening and wanted to understand more. I smiled a bit then too. I don’t know why he puts up with a whack-a-doodle like me, and sincerely wants to understand me. But, boy am I grateful.)

  1. I pet Ciro, lying on the butcher block enjoying the breeze from the fan. I told Ciro that I needed to be more like a cat and less like a dog. (Tim made a face and asked why he needed to be like Ciro. Isn’t it crazy? It was so clear to me, in my head. And yet in real life, what he heard was something completely different and cuckoo. I laughed and explained, while I wrapped Ciro up in a gentle hug.
  2. I told him that breathing like Gus wasn’t good. Dogs are mouth breathers, aren’t they? Gus had just come up from his last trip outside for the night. As he waited in the kitchen for Jason to give him his bedtime cookie, he mouth breathed. (And drooled a bit, Goddog love him.) He was panting and drooling a bit, breathing heavy with his mouth open, as all dogs do. And Ciro, like a respectable cat, sat smugly and serenely breathed through his perfect pink-heart shaped nose. I needed to be more like Ciro. A few cat-like, breaths through my nose, imitating my dear, old beloved, and I was feeling much better. (Now Tim smiled, big, for real.)

All this thought, reflection, and figuring out myself, really messes me up. I am totally raw and on edge. I keep the Grinch’s transformation in mind: his heart growing 3 sizes and feeling, feelings for the first time.   I think of the Monster at The End of this Book, on of my all time favorites!


I grew up with Sesame Street, watching it everyday. Grover rocks! (But if we are being honest, my true love is Cookie Monster. I called him “Cookie Maja.” Who else best represents Rachel? Even at that age, I knew. ) I ordered my Dad to read it to me over and over as a kid, and then read and reread it to myself as I grew. I never tire of the message. Grover is the monster he is so afraid of. It is just furry, lovable himself at end of the day. At the end of the day, it is just lovable me.

My Buddhist Reiki Master, Nancy taught me that IF I really touch the pain, it will disappear. I believe that. I want that. But it hurts. I hurt when I stretch and grow. Ick. And what do I do when I hurt? What do I do to heal? I bake. (I highly recommend a piece of the cake that follows, warm out of the oven, paired with the reading of the Monster at the End of this Book. A satisfying and comforting pairing.) My New England roots is where I find that comfort. Yankee Magazine plays a big part in that relationship. Gramma Harriet used to get the magazine and I loved reading it when I lived with her. One year, they had a cover that my Gramma loved. It was a sewing sampler and you could mail away and get a kit to make your own. Gramma Harriet did just that. And she gave it to me.


It has hung in my kitchen since. I love it, love Gramma Harriet, love Yankee Ingenuity, and Yankee Magazine. I friended it on Facebook. I love seeing the posts everyday.   And my Dad makes sure the beloved paper edition keeps coming. The July/August magazine has great recipes celebrating our blueberries.

(I remember one summer when Gramma Harriet and I went to Tony Andrew’s farm down the road from her in Falmouth. We picked a bunch of blueberries. She was good. She made blueberry muffins and ate lots of fresh ripe berries by the handful. I wanted to bake, more sweetly. I had my Great Aunt’s recipe for Blueberry Slump. (Gramma Harriet’s sister) My Cuzzin said it was the best. So of course, I found a different recipe for blueberry slump and made that. I invited Cuzzin over and we all ate. Cuzzin and G.H. agreed that Lou’s recipe was better, different and better. My slump was good, but not the comfort we were craving. Later that week, Cuzzin Deb invited me and G.H. over for the real deal! And I’m telling ya, it was awesome. Here is that family fave, as I learned the harder way and my good, but not great recipe.

Image-8a-for-8.7          Image-8b-for-8.7                        (Ciro makes a good recipe holder, in a pinch.)

For guaranteed healing from this 2016 angst moment, or month, I went straight to the pages of my Yankee Magazine to find comfort, and found it. The smell of molassesy sweetness makes me relax and practically purr. It’s a seriously old tradition of sugar. Its like a hug for the whole house. That is what I need right now.


Molasses-Blueberry Cake

Making the Blueberry Molasses Cake made me relax and smile, the house was happy, Jason gave it a thumbs up, Jenny and I credit a slice of it with coffee, for our success on the NY Times Crossword this week, and it is just the sweet to bring for Fran Farmer this week. I love a happy ending.










July 24th, 2003 & 2016

July (Iced) Coffee Tawpic for the day. Discuss


These visual/picture/summarizing/things are all over the place. And I am drawn to them: the combination of information, color and image. They are easy for me to read, absorb and retain the information. And some of them are so spot on. Some really manage to pull together a great message encapsulated in one frame that explains so much of my story. I share them on social media and I refer to them constantly when I talk. The name I was using for this quick fix was “infograph.” But that didn’t seem quite right when I said it out loud. So I googled it. The proper term is :

in·fo·graph·ic infōˈɡrafik/ noun/ a visual image such as a chart or diagram used to represent information or data. “a good infographic is worth a thousand words”

There it is.   I am currently obsessed with infographics. this one, hit me spot on. It starts in the top left hand corner, with the NSA icon. I like that it is in blue and I like that it shows a head. Stroke is a “brain attack,” and this image makes that clear. While stroke is included in heart disease, it is a highly time sensitive event centering in the brain. I like that.

The title “EFFECTS of STROKE” is one definition of me. Don’t misunderstand me. I am NOT DEFINED by my STROKE. My identity, who I am, what I am capable of now and what is possible in the future is not etched in stone or dictated by my stroke. That is way too limiting and rigid. I don’t roll that way, anymore. But, I am a stroke survivor and therefore each day, I live with the effects. The title of this infographic speaks right to me and connects me with a community of fellow survivors. It reduces my feeling of uniqueness to rubble. I like that.

I also identify with other groups: Moms, New Englanders, Crocheters, Bakers, Teachers, Gardeners, My political party, my spirituality, and Red Sox fans. These are only the ones on the tip of my tongue right now. I know there are so many others kinds of people I identify with, or feel membership of their group or relate to characteristics of them as my own.

My membership in the Stroke group is very different from the others. You see, I know other Moms. They are all around me and always have been. I have access daily to so many moms and use them, believe me, as a lifeline in my own “adventures in momhood.” The ways of moms are not a mystery to me and if one is, I can ask them to decode for me. I live in New England and so many ancestors of mine, before me have called this area, home for several hundred years. New England is in my genes.

I crochet with friends on a regular basis. Ditto for bakers, gardeners, like minded political peeps, spiritually simpatico friends and Red Sox fans. BUT Stroke, not so much. Stroke was only familiar to me as something that happened to my Jean Granny, when she was elderly. I had no resources for how to live with effects of stroke, my stroke, when I was 30 years old or any day going forward that I might survive. For this new frontier, I needed tools. I didn’t have any answers and questions keep coming. To this day, new and changing effects of stroke impact my life. In the early days, I was drowning in the quicksand of my own diseased isolation. I needed help. But I didn’t accept “stroke” as a label that applied to me, then. I didn’t want to believe that stroke was my truth. Denial didn’t change the facts.

Even when I had accepted and made peace with my stroke, I didn’t see people like me everyday, any day to be honest. I saw no one like me at my hospital. I saw no young survivors on TV. F.A.S.T was not yet a campaign for stroke awareness. https://www.bing.com/videos/search?q=Fast+Stroke+Warning+Signs&&view=detail&mid=DB98E86DD901207A504ADB98E86DD901207A504A&FORM=VRDGAR

No one seemed to be talking about living a high quality of life post stroke. I saw only references to very disabled old people with strokes. When Jean Granny passed away three years after my stroke, my connection to stroke left. My relationship with a huge part of me, died too. Not good. I didn’t know, what I didn’t know.

The internet and social media are actually a great resource for me in that area. I reached out by email to the American Heart and Stroke Association, quietly, shyly and slowly and found a new world, full of possibility. At the local, state, national and even international level, there is a powerful community of people just like me.

Owning my membership in the Stroke Community is a life line. Pursuing the relationship with this group opens doors to a better life, every day. In college, I was a psychology major. I particularly loved social psychology. We learned about how groups function in human society. Our admission that we are the member of one group gives us access to the security and support of that group. It gives us identity. This seems a kind of built in human functioning. I was fascinated then by consciously thinking about what groups I thought I was in vs. what groups I wanted to be in. This area of thought could be certainly encompass mind games. I was intrigued by that.

Are there big parts of you that seem a bit foreign and need decoding? What titles get your attention? What labels, for lack of a better term, do you identify with? Which infographics do you see, or would you like to see, that make you say “THAT’S ME?”

Within this particular infographic, I am drawn to the blue person standing in the center. I am one of 6.8 million adult stroke survivors living in our country. We number in the millions. I am not unique. I am not that rare. There are 6.8 million people who know what it feels like to live with the effects of stroke. Just that fact makes me breathe easier. It was not a personal attack from God that I “suffered” a stroke. Instead of “why me have a stroke? Or Poor Poor Me, I had a stroke,” this numbers tells me “Why NOT me have a stroke, just like the other 6.8 million survivors?” I am not alone. I like that. What group do you identify with? Have you been a part of the group your whole life, or is it a newer association? What is your community?

To the left of the blue head it says “Stroke in the United States.” The fact in that box has significance way beyond my own selfish little being, to all Americans, full stop. Stroke is a big player in the U.S. We are not dying from our strokes as much as we used to. I didn’t. I like that, now. But Strokes create serious, long-term disabilities. We head the charts for our country in this category. I have life long effects from my stroke. And they are serious, to me and those I love, live and work with. The disabilities don’t all get better over time. They effect everyday life and they don’t go away. They are with me everyday for the rest of my life, and I am blessed by each day. My disabilities are tiny compared to so many stroke survivors that I know, knew and will never meet. I know this. I knew this even 13 years ago. In the hospital, I learned fast how savage stroke is and how lucky I had been. I have to speak for this group of stroke survivors, because they can’t. And this is definitely an anger trigger for me. I own it. 80% of strokes are preventable. They never have to happen. We have to do better for the 80%. The cost of stroke, financially and in human terms, is way too high. PREVENT.PREVENT. PREVENT

But back to reality. Focus Rachel! My stroke happened and this is about the effects of stroke. Today, I have to live life on life’s terms, and I need help. Are there groups that you might be a part of that have specific statistical significance? Does membership in a particular group, by virtue of birth or circumstance create conditions in your life that you NEED to be aware of? Could this awareness bring you to a happier and/or healthier place?

The green box on the bottom left hand side of the infographic talks about THE QUALITY OF LIFE EFFECTS from stroke. I consider my quality of life today. I am concerned with others’ quality of life too. I am not sure this was a big issue for me before my stroke. I had heard the words. But they seemed to apply to old or sick people who were housebound or lived in a home. I wasn’t very conscious of my part in my own health, how I could help those around me live a better life, who could help me if I wasn’t doing so great, or how much I would need to change if something major happened. Hmmmm.

The infographic says that 80 percent of stroke survivors worry about our financial future. Darn straight! I have certainly been there, and can be again. Surviving a stroke is expensive. Trying to take care of yourself and treating the effects of stroke is often cost prohibitive. I don’t think our society is quite ready for so many people to have strokes younger, and survive. The model of care for stroke survivors is not centered on really, long term help to our population. Our model of care and careers has to change. We are here now. We want to be a part of society and pull our weight. But we need help.

I have to make choices about what treatments I get and how often. I benefit from Botox, but it costs me way too much money. No one should have to make that choice. I worried a lot more in the years right after my stroke. I worried about everything then. My quality of life was so radically altered in the blink of an eye. The future was tenuous at best. I was a walking fear ball. It didn’t help the situation, but I understand and have more compassion for the Rachel that lived through that.

I have retrained my brain against worrying. Worrying is futile. It doesn’t change reality. It certainly does stifle my ability to problem solve and generate new ideas. My friend said to me, “worry is another form of control.” I wish I could control LIFE. I wish I was that powerful. But stroke has taught me different. I can only live in the present. Worrying is just a polite way of trying to control the future, for me. So I live in today. I do plan for the future financially. I plan to live a long life within my means, providing for the family that I am blessed to have. I try to save. But I admit, it’s tough. We don’t have savings. My son doesn’t have a college fund. I am still paying my student loan that I got to be a teacher. The loan went into default when I had my stroke. Since then I have paid it off 3 times over, but they still say I owe. So I pay. I know I am not alone in this money mire.

Some of my stroke related expenses now are paid, before saving for Jason’s college. I have to take care of the bills of today. But I believe that we are making a good life for Jason. I have faith that our family will continue to be successful, in terms of health and happiness. I believe our financial future, will be healthy too. Tim and I do what we can to be happy and healthy in all our affairs, financial included. I do worry, at times. But it never helps. Do you worry? Does it help? How do you handle financial uncertainty?

RETURN to Work: I did return to work. The statistic says that only half of stroke survivors return to work. Do they mean that they returned to the job they had before the stroke? Or do they mean that only half of us are able to work at all after stroke? I don’t know. I know that it took me a while to be able to go back. And I went back before I was ready. I had to. And I went back utterly changed from who I was before my stroke. It was both humbling and humiliating to feel so like such an infant at work. My comfort level with myself and my professional skills were shot. I spent much of the time, trying not to worry about having another stroke. I knew I was supposed to focus on the children. I knew I was there to keep them safe and teach them. But I wasn’t safe. It was tough.

I learned to love teaching again, as the new Rachel. It took time and a school community that loved me and believed in me. I need help. I get it. I have an assistant who makes it possible to teach. I have technology that helps me write quickly and clearly. And I am worth the investment today. I have had tough times. I am a survivor. Students respond to that. Many of my kids have had a hard childhood, if you can call it that. It is rough for them on so many levels. But they come to school. They show up and they learn. They are my heroes and I tell them that.

My kids know that I have had a hard time. They know I am not full of cr** when I say that I understand. I tell them that in my room, I am the grown up and I will keep them safe. I got this. And they believe me. They are freed to be children for the 7 hours of school. I am able to incorporate my life experience into improving myself as a teacher. That is a gift.

But I am lucky. I was able to make this transition. I will teach as long as I love it and am good at it. My “work” is to be useful, help people, stay active, and keep moving. If my “work” needs to be other than teaching, that will become clear over time. I have choices. Many stroke survivors are not so lucky. I know this.

Also in the Quality of Life box, is driving and safety. I was able to return to driving within months of my stroke. I was very lucky. I knew it then. I know it now. I value the independence and freedom I have because I can drive after my stroke. I own a car and my license has no restrictions on it. That is a major gift. It is a gift that most stroke survivors don’t have.

And my safety is a gift too. The PT really helped me regain stability and balance. I have not had the kind of falls that many experience. I do live most days with a different “normal” in terms of strength, sensation, balance and coordination. Some days are better than others. Some are worse. Over time, I learn more about my body and what it likes and doesn’t like. My body is not subtle with me. It talks louder and louder until I listen. Does your body talk to you?

I usually overdo it physically. I believe, most survivors overdo it in an effort to be NORMAL and get the most out of life. We lost out on so much while recovering and we are aware that the future is not guaranteed. No PRESSURE! Ha. There are days when my balance and coordination is WAY off. I have to be smart and sensible those days. I need help those days.

I do get wicked scared in the winter, when the first icy day comes. A fall on the ice scares the cr** out of me. I am NOT afraid of the pain. I think most survivors are pros at dealing with pain. That’s not it. I don’t want to be out of commission. I don’t want to lose my independence. I don’t want to miss anything being laid up with a fall. I don’t want to be a burden to anyone. More than that, I WANT to live every single day I have, as able bodied as I am now.

So, on the icy days, I walk as my Gramma Harriet did. I remember. She would go out, but taking strong careful steps with her head held high.  She told me that if she was too scared, her body would get so tense and she would fall for sure. Gramma Harriet did have a couple of real good falls. She had to look at why they happened and she worked to do better. But she never stopped walking. She never stared at her feet while walking. Gramma Harriet told me that she kept her head up to meet life head on. She wanted to say hello to people’s faces, not their shoes.  She was smart and sensible.  I remember this. I cannot live in fear. I can be smart and sensible and life fully today.

From what I hear from my NON-Stroke friends and family, worrying about finances is pretty universal. It seems that the people I know worry about money.  Money is tight and the future is not secure. Our generation is in a different position than our parents.  I have had the same job for my adult life. That is good for me, today. Most of my friends have frequently changed jobs and often changed careers entirely. What a gift to be able to do new things and have different experiences. Driving a car is something that changes with life experience. At some point in our lives, if we are lucky enough to get old, we are faced with the day we have to stop driving. My months not driving after my stroke, really make me appreciate every time I get in the driver’s seat of the car today.

And safety. That too is something society often associates with being elderly and feeble. I don’t know that I have to be feeble when I age. (I have been feeble bodied at age 30.) How could I know what the future holds? I see a lot of folks working so hard to deny their fear of aging or being stuck in that fear, that they lose life today.

Stroke teaches me to live in Today. Stroke has taught me not to worry about that day in the future. Do you worry about that? How much time and energy is lost to you by worrying about the future that hasn’t happened yet? Could you be missing out on a gift of today because your energy is on the future? Aging, driving, money worries and safety seem like facts of life. But how we handle the facts, dictates our quality of life. (I absolutely do know that for many stroke survivors, the financial future is much bleaker than mine. But will worrying help them or change things? Are there are actions that might help?)

Each box on this infographic is connected to the next. The big, blue box on the right, PHYSICAL EFFECTS, is certainly connected to all the others. Stroke teaches me that. My mind, body and spirit are connected. They effect each other and stroke effected each of them. And they are all parts of me. I had some significant vision issues right after my stroke. I remember it most in the ICU. I remember how blurry the staff looked through the crystal clear glass wall. The TV screen in my room was right in front of me, but seemed far away and constantly wavering. Mercifully, that effect dissipated. I do have some vision issues at times right now, but it seems to happen most when I am over overtired. Sometimes I have trouble reading the newspaper. I worry, for a bit, when it happens. My default setting is that the vision trouble means that I am getting ready to have another stroke. I know it is irrational. I know it is not true. I do deep breathing and Reiki, I pray and it passes. It takes time. I look around me and realize that it might just be vision issues related to the luxury I have of getting older. My eyes are aging. I am lucky to have that problem. Not everyone does.

Sleep is one of the bigger physical effects of my stroke, or rather lack of sleep. Lying flat is not really my favorite position anymore. It goes right back to losing my swallow. Every drip of spit, I had to suction out of my mouth or I would aspirate and die. They told me at night, as long as I slept on a small incline, I would be fine. I guess you make less spit at night and it just drools out your mouth while you sleep if you can’t swallow. I didn’t believe them. I had no faith. So sleep was not my friend. There was nothing restful about the idea that I would drown in my own spit. Even after I regained my swallow, I lacked faith that I would make it through the night.

Then and now, breathing through my nose, at any position can be a real bugger, most of the time. I have facial pain and messed up nerves in my face. They are worse at night. I don’t thermoregulate my heat in my body, so temperature plays a factor in my sleep. Blankets on. Blankets off. Window open. Heat on…

I fall asleep pretty easily, many days. OK! OK! Be Real Rachel! Some days it takes me a while to fall asleep, but that is because my head is in overdrive. I am thinking too much and cannot turn off my brain. Something tells me this is NOT stroke related. Does your brain resist turning off at night? Do your thoughts about the past or future, steal your sleep?

A good night of sleep for me is when I get a real 4 hour clip of uninterrupted sleep. Dreamy!!!! It is few and far between that it happens. Oh well. I enjoy the rest I get. I can do more Reiki and other things that will improve my sleep. And tonight is always a clean slate for a better night’s sleep.

Most nights I am up every hour or so. (My older boy, Ciro is rewarded by my silly sleep cycle. His little old body burns fuel fast. He is hungry every hour pretty much. So I feed him special, whenever I get up in the night. He appreciates it. His purrs are worth it, for me. And the house is so peaceful and cozy at night. I love to look and smile at my gifts. In those quiet moments, since I am up anyway and no one else is, I can really appreciate how lucky I am. I get kind of smug at 2am, strutting around MY house, feeling healthy and strong, watching my loved one’s sleep and snuggling with the 4 leggeds. I look out the windows or venture onto the porch catch a glimpse of our skunk or hear the first birds in the morning. These moments are gifts.

I do realize that sleep is a lot more important to my health than it may seem. So I am focused on catching sleep when I can, and improving the quality and quantity of my sleep. http://www.braininjury-explanation.com/consequences/invisible-consequences/neurofatigue   This is a new thing for me to learn about. A Stroke group on Face Book shared it and the information hit me hard. It spoke right to me. The visuals with the car batteries are especially effective infographics to me. It illustrated for me and those I shared it with, how different it is for me when I wake up in the morning than most people. A few years ago I wouldn’t have looked at a page about BRAIN INJURY. It was not a label I wanted to touch with a 10 foot pole. Now I don’t mind. Reading this article helps me, help myself. It makes me less of a mystery to myself. It is a good thing. I like that.

I am one of the 74% percent of stroke survivors that experience pain. As I have said, the muscles on the left side of my face hurt, pretty much always. But I am actually fine with it now. I do what I can to help. If I massaged more and got back into speech therapy, it would help. I know that. Are you aware of the pain in you? What does it tell you?

I don’t really have the Hemiparesis. I have full use of both sides of my body. I am grateful for this. I do have that weird thing where I feel no pain, heat or cold on the entire right side of my body, head to toe. I also can’t regulate my body heat on that side, so seasonal changes are quite the adventure for me. Getting overheated is very stressful on my body, as is getting wicked cold. It takes a long time for me to get back to normal. I do feel like a bit of an oddball or outsider with “normal” folk, because I have to do more than have a cup of hot cocoa after I play in the snow. I do/can feel separated from others if I dwell on it.

I think this effect is related to the location of my stroke, brain stem. Different Strokes (effects) for different folks, I guess! I have gotten used to that too. I retrain myself to check hot or cold things with my left hand. I learned that the hard way with pan handles on the stove and scalding water in the shower. I bundle up when it is starting to get cold, instead of waiting til I am frozen and sick for two days with BONE cold. (Bone cold means that my bones are so cold to me that they feel like they could snap like a frozen twig. I have to get in a long hot shower, then drink endless hot teas, with 5 layers on under 5 quilts before I get warm, a few days later. I try to prevent that these days. I know it will happen and I know I don’t like it, so I try to help myself avoid it.)

The lack of pain thing on the right side is a challenge that is MOI too. I don’t feel it. So if I stub my toe, cut myself shaving, get hit with a stray baseball of my son’s, crash into something as I careen through my day or carry a bag on that side that is really much too heavy, I don’t really know it happened. It certainly doesn’t slow me down, because I rarely know it happened. I know that most people stop and check themselves if they are injured. Eh….. As long as I don’t get blood on the carpet, keep moving. I have less tactile sensation on the right side, so I have to be aware of that too.

But back to the pain thingy, I think I have a significant example of this. I was lucky and blessed to get pregnant 5 years after my stroke. What a miracle! My hospital sent me across the city to a practice for high risk pregnancy because of my stroke. I got terrific care. About 5 months in, I started getting overloaded with fluid. It was icky. The docs said I had to wear compression pantyhose. Oh joy. That was so much fun. It was like getting the filling back inside a sausage casing. And I was the filling. And there was always way too much filling to possibly fit into the casing. I was SAUSAGE MOMMA. But it worked.

Then the ultrasound found a problem with Jason’s heart. We had to go in for 3-D ultrasounds, 3 times a week to see if he was doing ok. If he wasn’t, they would take him right then. And every day held on inside me, made his health when he came outside better. He ended up being only 5 weeks early. And even then, I was the problem actually. I really started blowing up with fluid. The docs kept a close eye on me. On January 21st, I brought them the “urine” I had collected for the night. They had sent me home with one jug and I returned with their jug, plus two extra gallons. They admitted me right away. I was septic, toxic, and all around wicked sick. The nurse had me hooked up to a monitor. It was going crazy with really big spikes and lots of activity. The nurse told me those spikes were contractions, mine. She told me to focus on the spikes and pay attention to what my body was feeling. I did. And I felt them. I felt someone put my back and guts in a vice grip. Holy Cr** that hurt. The nurse said that I had probably been in labor for quite a while by then.

But contractions hurt and when my body hurts, the stroke effects can powerfully take over. My left side felt the contraction and it hurt. Bad. So the right side told the left side to follow its lead. To avoid pain, the left side numbed up and ignored the pain just like the right side always does. It was very effective and done without my consent. My body can do that. I am impressed and horrified. I didn’t know I was in labor!!!!!!!!! That is not normal or healthy.

Everything worked out for me and Jason, but it was a lesson I hope I learned. My body and mind will play tricks on me. I need to pay better attention to what my body is saying. And I can. When I take the time for myself, practice Reiki, and make space I can feel more on the right side. I can feel the sharp pain as I cut myself chopping cabbage trying to make coleslaw. And the pain is a good thing, right? The two sides of me are more integrated when I practice. The whole me is more healthy. Just because I can avoid pain, doesn’t mean I should.

I certainly am one of the 70% of stroke survivors with increased fatigue. It was absolutely brutal the first year after the stroke. It came in great waves and totally knocked me down. An avalanche of exhaustion would hit after the slightest exertion during those early years. It was one of the things that made going back to work so difficult, if not impossible. I felt so helpless, weak, and useless as a result.   Fatigue is one of those “invisible” effects. But just because you can’t see it, doesn’t mean it is not totally real. I deal with it, in varying degrees every day. The new article on neurofatigue really helps me today. I am looking at my fatigue through a new lens. I am trying new things to help. I am more gentle, (for 5 minutes) with myself when I admit that I am tired and need a break.

And I am really focusing on improving my sleep to possibly reduce my fatigue. Life is exhausting if you really live each day. There is so much we GET to do and experience every single day. Life can be equally energizing, I think. I get the biggest rush from some of the most boring daily activities that I GET to do today: feeding the birds, the first cup of coffee, making a good lunch for Jason, seeing the rose bush doing better after I fed, mulched and watered it, taking Gus for a walk around the block and saying hello to my neighbors. All of these gifts of daily living fill my tank with love, joy and hope. It is that simple. (I am working on keeping it that simple.) Do the everyday gifts of your life fill your tank or are your daily “chores” dragging you down and making you wish for something else? Are you exhausted from living life to its’ fullest or totally sucked dry by your reaction to life?

About half of all stroke survivors have problems with control of their bladder/bowels. It is certainly not a glamorous effect. I can identify with this trouble. Before my stroke, I believed that this issue was for infants who hadn’t been potty trained yet or elderly, and it was expected then. Now I know that it is something to be lived with. Some days our body is our friend and some days, we feel like an infant or octogenarian needing diapers.

I will take this trouble any day over the dysphagia I had right after my stroke. Losing any and all swallow was HUGE with a capital Big, for me. I couldn’t even swallow my spit. Gross…and utterly terrifying. Forget feeling like a baby or a senior, I didn’t even feel human when I couldn’t eat. I couldn’t break bread. I wasn’t alive. I was a robot, I believed. And I lived that belief. It was the story I told myself and it made me as sick as any effect of stroke. I don’t have that story in my life now. But I don’t forget it. I respect it. I know what these effects can do to people, way beyond an affected and broken body part. It is a powerful, humbling teacher.

Spasticity, I deal with that every day. I don’t have the claw hand that most people recognize as a stroke effect. I have spastic muscles in the left side of my face and neck. The breathing issues stemming from spasticity can be tough. But I do pretty good with that and the pain.   Honestly, the most difficult part of my spasticity comes out of ego and vanity. When the muscles are in spasm, my face looks contorted, my nose runs, I might drool, my speech becomes so difficult to make, it slows way down and I sound drunk. I feel ugly. I am embarrassed by myself and I want to hide. I don’t like myself. And all because of the spastic muscles in my face.

It’s not like I ever prided myself on my looks. I never have. I never was noticed for being very good looking or beautiful. I was average. But the spasticity hits my ego right down to barfalicious, hideous, lock-me-up, ugly girl. I have to get right sized and reality-based when the muscles lock up. Yes, I look weird. Yes, you can’t fix it. Yes, it is not pretty. Yes, it makes you uncomfortable. But what do I care what you think anyway? I honestly don’t really care today? I am a survivor. I am proud of my strength. My spasticity will calm down and all you will see, I hope, is my heart shining through. If you are hung up on my appearance, made uncomfortable by me, that’s on you. What makes you feel pretty? When are you ugly? Am I the only one still holding on to vanity over health?

The last physical effect is the foot drop. This one is not huge in my life, but certainly comes out when I am fatigued. My foot becomes more like a flipper to haul from behind, than my usual size nine foot. I have fallen once, walking Jason home from Kindergarten one day, when I was surprised by the foot drop. I had a good tumble, skinned my knee, rolled my ankle and then popped up and told Jason to close his mouth and keep walking. I was fine.   (In my head, I was terrified by the betrayal of my body on me. Here I was, walking my son home from school like a normal, good, mom and I fell. I felt so vulnerable and weak. I was momentarily paralyzed by the immediate rush of terror and fear. Had the fall hurt my neck, my artery, was I going to stroke out? The thoughts came to my head. My throat filled with tears and anger.

I looked up at Jason as I sat on the ground. He asked if I was ok because he falls all the time too. Did I need a bandaid was his question. His concern was just the bandaid I needed. I got up and moved on. I was very fatigued that day, that week and ignoring it to be a good mom, daughter, wife and teacher. My body gave me a wake-up call with the drop foot. It comes and goes now. I haven’t fallen since, but almost, many times. I make a point to think about how I move my feet (heel, toe, heel, toe) and where they are landing. You might not have to be conscious of walking. But I do. And it helps.

Everyone does fall, sometimes, as they walk through life. Falling is part of being human. And Jason reminded me of that when I fell. Letting him help me get up off the ground was big for me. Accepting help is part of my humanity. And I am screwed if I forget that. Getting back up and walking forward is huge for me. Taking confident strides heals me. Resting at home and admitting my weakness, is humbling and part of my human story.

Are you aware of the potential healing inside your own body? Do you have physical things going on in you? Do you ignore them? Or do you focus too much on the physical pain and problems? Either extreme presents a challenge to someone seeking balance. Are you aware of your physical self? Do you give yourself what you need? Are you making yourself sicker or healthier?

There is a small burgundy box in the bottom right corner of the infographic, about PEDIATRIC STROKE. This is a sad and scary box for me. My Achilles heel is hurt kids or animals. I rail against it and fight to protect them. But I am powerless most of the time. Pediatric Stroke hits babies in the womb, infants, toddlers and teens. Brain cells in developing brains are killed and seizures, epilepsy and cerebral palsy can result. The rock star survivor in this category that I am proud to know, had her stroke at age 14. She couldn’t walk or play for months. Now she can. And she does. One year of college is under her belt now.  She is amazing, and beautiful and inspiring. She is a hero. Remember, stroke is not personal. There is no answer to the question “why or how could a child have a stroke?” The alternative questions I choose today are “why not a child have a stroke? How can we prevent more strokes? How can we help pediatric stroke survivors thrive?

The orange box on the left side gets me the most. The orange box is about the Cognitive/Emotional effects of stroke. Yup, thinking and feeling, my favorites. NOT! (can you hear my sarcasm.)

Yup,  I have had memory problems. I didn’t get lost anywhere, except inside my own mind. There were tasks that had multiple steps and I had a really hard time being successful.   I used to love doing crossword puzzles. For 6 or 7 years before my stroke, I tackled the puzzles almost every day. I was really good on the puzzles in my local paper. I could do them, 7 days a week in ink, I might add.  When I had the slightly tougher Boston Globe puzzles, I did ok too. The penultimate crossword puzzles have to be in the New York Times, particularly on Sunday. I tried my hand at these puzzles too. I got a new atlas that helped. When I got a corner of the Times done, I felt victorious and wicked smaht.  But after my stroke, not so much. I couldn’t retrieve any of the information that I knew was still up there, to plug in a puzzle. Everything on the puzzle grid seemed random, disconnected and left me beyond frustrated. No, let’s be honest. I felt stupid.

Somewhere along the line, I remembered that Gramma Harriet had gotten me into the crosswords, when she was 70+. She would sit for a bit everyday in her recliner. There was a clipboard in a basket to the left of her chair. On the clipboard was a crossword puzzle. I would sit and listen as she read a clue, paused or without hesitation, marked her answer down. Sometimes I would help. It felt really good to fill in those squares. I remember that Gramma Harriet made a point, repeatedly, to tell me that she did the puzzles to “keep her mind sharp.” She had read in AARP that you have to exercise your mind or it will lose its’ ability. She wanted to keep her independence and therefore had to do her mind exercises every day. And she did, and she was. The memory of her story, her puzzles, that clipboard and the time with her, was in my Good Memory Department. One day it came back to me, and I thought I should do what she did and try to get sharp and stay sharp. I got back into the crosswords and certainly improved to be able to do SOME of a puzzle, SOMETIMES. Tim is really good at the puzzles. He goes after them in pen! I try to be brave and put my 2 cents in, but he is quick to fill the whole thing in. I know that I have retrained my brain and healed beyond what I believed was possible. But I am healthier than I realized. Let’s be honest, an event of last week made me feel positively intellectual.

Jason and I went off to Wessyfoo for our weekly, escape the heat-enjoy the yard-and spend time with my family-because I need to- trip. Jason lured my uncle off to the golf course to practice putting, of course. I followed my aunt, with coffee, out to the gazebo. She had the paper and a pencil. Everyday she does the local paper’s crossword, with coffee in the morning. I had forgotten she did this. I love it, and her. But this was not the local puzzle. This was the New York Times.

My aunt said that she is good at the NYT’s puzzles on Monday through Wednesday! Wow! They get harder each day, culminating in the Sunday puzzle. I was impressed and going to content myself with sitting, relaxing, admiring the yard and drinking coffee, while she battled The Times.   My aunt had other ideas. Our two heads were going to be better than just her head and we were to tackle the puzzle together. Yikes. I tried to hide my nervousness.

We pulled our chairs together, so we could both see and read the clues. She began calling out clues and rapidly filling in great answers. I was amazed at her. This was the New York Times for goodness sake, and she was whizzing along! I leaned in, intrigued with her success. And sure enough, I was needed for this puzzle. And I helped with this puzzle. I figured out the theme of the puzzle to be baseball. I saw this thread in the clues. That was cool. And I knew some of the modern lingo-isms that were not in my aunt’s arena. I credit my students and Jason with any current stuff I know. I knew that “a term describing really important and significant events” was EPIC, of course. Jason says that all the time and I know what he means when he says it. I did it. I was doing the Times’ puzzle. We did it. As the “mens” got home from golf, my aunt and I completed the entire puzzle. I mean we filled in the whole darn thing and I think the answers were actually correct, not just jammed in there because they fit. Yee HAW! What a rush! Days later, I am still impressed! It is good to realize growth in myself. I like that.

(Reading remains tough for me. I don’t have the endurance and focus for long written text that I did before my stroke. This is frustrating in my line of work and embarrassing for me when family and friends engage in conversations about books and I sit quiet, knowing that I have nothing to offer. I respect this challenge. I appreciate this stroke effect. I am open to other ways of “reading.” And I try to expand my ability on a regular basis.)

I never had the pseudobulbar effect. I am grateful that there are PSA’s on TV about this. Danny Glover is making people aware and not ashamed of this effect.


I certainly had depression as an effect of my stroke, for years, severe, isolating, sad, and paralyzing. (I was depressed before my stroke too. I had been in and out of “therapy” since I was 7 years old and had been on medication as an adult. The two experiences of depression for me are different, but related. Neither applies to me now.) Stroke changes brain functioning. That is depressing. Stroke changed me, totally without my permission. That is depressing. Stroke made me face my own weakness, helplessness, frailty and mortality. That is depressing. And I was depressed.

Some of the depression was certainly related to the stroke’s impact on my brain. I don’t understand the chemistry of it, but I am sure my brain chemicals were whacked out and messed up. I also attribute a major portion of the depression to the message our society gives us. We are told that we will “get back to who we were before our stroke.”   We who have strokes are told that we are “going to be fine. We are ok. We will totally recover back to who we were.” BULL***T! I know that the words are meant as encouragement. I know the words come from people who care so much for us, and yet have no words for what has happened to us. I know they are just words. But the message, the communication is significant. It matters to stroke survivors, it mattered to me. I was forever changed in the moment of my stroke. And when those words, that message came to me, I became invisible. I felt like no one really saw me. If you really were talking to me, wasn’t it obvious how much I had changed? When you told me that I would go back and get my old life back, I heard that you thought I was broken as a result of my stroke and I needed to be fixed.

It is impossible to go backwards anyways. No one can. Life changes us and we are changed. I believe that this message makes the survivor angry because they know the reality of their change. Inability to do what is expected of us, wanted for us, told to us, turns the anger into depression. We silence ourselves and suffer.   I believe that we have to go through stages of grieving, so to speak, after our stroke. Anger and sadness are stages. We have to grieve the passing of who we were and the life we had then. We have to let go of the labels we had for ourselves, that we internalize to be our identity.

We have to make room for a new life. And that is ok. I know that I could never have had a successful marriage if it weren’t for my stroke. I really had no idea how to be a part of a team before my stroke. I had no idea how to accept myself or anyone else. I was always trying to change people. I don’t do that today. And that is good. That is healthy. That is living life on life’s terms. And stroke survivors all know this. We are blessed by this experience and given a chance to really live and get the most out of each day.   So for me, depression is not an effect, today. I live life on life’s terms and have not experienced depression since I began living that way. Do you believe that suffering and depression are required in life? Do you believe it could be different, just for today? Is today enough?

I have a few bad “minutes” now and then. I don’t have bad days. I don’t choose to suffer like that today. The work and routines and “brain training” that I need to live this way, happen every single day. It is a very different way to live. I am joyful today, in a way that I never was, before or for a couple years after my stroke.

I am also blessed that I have not experienced aphasia. My Mom’s dear friend/mentor that was in the nursing home with me, did have aphasia. It was a severe case. She could not produce any intelligible language either by speaking or keyboarding. Her face was expressive and the eyes bright. The one utterance she made was, “Si.” It was repeated over and over with emphasis in conversation. Her family and friends were certainly pained with this effect. The great woman they knew, was gone. It happened so fast. It was all they had ever known her to be. They had to grieve this loss. She was not the literary, language diva she had been. (I however, had great conversations with her, much to my surprise.   I understood what she was telling me, somehow. She was expressing herself to me. I don’t know how. I don’t need to. It’s a stroke thing!)

I don’t believe that she was pained by her aphasia. I believe that the Stroke took away that part of her that would suffer from difficulty expressing. I have seen this happen with other stroke friends. I see that they do not suffer. Their families suffer. I am speaking only about the person who has the stroke. In my heart, it makes sense to me, that we are both protected and effected by the Stroke. I certainly suffered for years after my stroke. I went through things the way I had to, to get to the life I live now. But if you are not going to realize that freedom post-stroke, I believe there is peace.

I knew and loved a MOM. Her name is in capitals because she was the epitome of motherhood. Everything about her was good and loving and patient and kind and the best for children. I am so grateful that Jason was one of the children touched by MOM. I am equally grateful that I got to see this MOM is action. When Jason was a baby she bounced him. He’d be crying and fussing and squirming, as babies do. MOM would hold him on one hip and start bouncing. And she would jiggle and bounce him for what seemed an eternity. (I kinda worried that it might jar his innards a bit too much, but it never did.) And Jason would stop his unhappiness, right away and smile at her. I tried to imitate the move many times. No success. It is an exhausting endeavour. I don’t know how she did it. She had magic ways.

A couple years later, she spent Halloween with us. Jason had wanted desperately, and I had of course bought, a shark costume. It was a fabulous costume, head to toe. And Jason wouldn’t wear it. That’s right, on Halloween night, he refused; crossed his arms, set his jaw and shook his head. I was furious. I cancelled Halloween. “No Trick-or-Treating for you!” I bellowed at my 4 year old son. I was out of my mind, enraged at his disobedience. I had gotten him what he wanted! And it was something great! And this is how you repay me? On the big night?

And then Mom showed up. She listened to my rant and tirade, smiled and said she would take him out trick-or treating. I couldn’t believe it. I had cancelled his holiday and now she had him by the hand to go out in his jeans and a sweatshirt. I stood mouth opened in shock, aghast at her move. But I didn’t stop her. I couldn’t. You can’t stop MOM.

I was embarrassed that my kid would be out without a costume “begging” for candy. Mom didn’t notice. Outside, Jason walked happily with MOM into the dark neighborhood. I watched. Jason didn’t want to go up to a door to get candy. It was ok with MOM. She went for him. I was mortified. What would the people think of MOM coming and getting candy for a kid with no costume? MOM was not concerned. She said that Jason would go when he was ready. I couldn’t take it. I went sulking back to my porch to pass out candy.

After a time, MOM and Jason came back with big smiles and a big bag of loot. And by then, I smiled too. How insane I had been. What was so important about the costume anyway? How did it all become about me? What if she hadn’t been there? I knew in that moment that I was witnessing a pro at work. I was totally aware that this was a significant, unforgettable night. I was humbled to learn a great lesson that night about what is really important, from someone who knew. How grateful I was to be able to watch a Master MOM in action.

Not a year later, Stroke got MOM, alone. She was a nurse. She knew the signs. I think she knew them in others. She would spot a stroke FAST on a beloved child, but neglected herself. Stroke hit hard and by the time she was found, hours later, MOM was already gone to a safe place. Her soul/spirit was rescued at the moment of her stroke and went to be happy and whole and beloved. Her body was kept alive by machines for 6 months until her family was ready to let her go. They had to grieve and let go in their time. But I don’t believe she suffered then.

I saw her the first day after her stroke and many more days, until she was freed. I would play videos of Jason playing and laughing, to her. And she would smile and cry. I know she heard his laughter. I know it reached her. Her tears and the expression on her face, I just knew that she was there. She was there to be with Jason and then was gone back to her safe place. I just know this. Stroke takes so much from the survivor and their loved ones. But the spirit and soul is safe and free in the instant of the stroke. We hurt. We grieve. MOM was whole again, loving kids and being loved. I know it. Years later, I miss her so. I try to be as good a MOM as she was. I try to do what she would do, but she is not here. It hurts. I hate Stroke, for what and who we lose, sooner than we would like. But this grief is for all that lose a loved one. This feeling is not unique to the Stroke community. Death stinks for those left behind. I have to seek comfort in the blessings of her life and the fact that I was lucky enough to know and love her. I have to try to be a better MOM, for her. And I have to let the tears come when they do, for her.

Believe that I believe, at the moment of MOM and Mentor’s strokes, the spirit is brought somewhere safe, where they can truly be free. In that place, the survivor is happy and peaceful and can do all things that their Stroke took away. The part of the Stroke Survivor that we see pains us, for they are not as they were. They cannot be for us, what they were. But they are free. I believe this.

The infographic, EFFECTS OF STROKE has taken me from looking at few pictures and facts about STROKE, down a path of reflection and sharing about LIFE. Life on Life’s terms is what it all boils down to, for me, yet again. As Jean Granny used to say, “Life is Crazy.” I agree. What an adventure. And as usual, I like a good tune with my journey.  Jason and I both love a song. (ok. Ok. We both love a lot of songs and add new ones to the list all the time.) My students made me play this song over and over during indoor recess. They love the music of this song, the artist, the movie associated with it, and the beat. They are able to express grief when they listen to this song. It makes them emotional and they requested the song when they needed to deal with some feelings in their lives. (Which for 6th graders, between life and hormones, they asked me to play the song daily.) My students came together and listened to this song. There was healing for our group each time the song was played. It was/is magical the way it works.

I love the song for a STROKE support angle too. It speaks of friendship, loyalty and love. What is more important? It talks about people leaving our lives, changing paths and making our lives matter, in the end.   “The love will never be lost.” I love that line. I know that what and who stroke takes away from us, is not gone forever. We cannot lose love. The loved one, our memories, their gifts in our lives, and our own spirits are not limited to this body and this world. I believe this. Love is more powerful than STROKE. Lives are changed by everyday events and big trauma like stroke. There is no denying the change. We mourn and grieve. We are given a fresh start to be whoever we want to be. The sky is the limit. Our gifts are limitless. Our ability to love is limitless. And each day, we are given a great gift, to enjoy the love we have while we have it. We don’t know when our journey here will end. The love won’t end. But our days here will, and there are awesome things to experience. We GET to enjoy a great ride today, and tomorrow will take care of itself.

Jason fell in love with this tune in kindergarten. Each student was paired for the year with a sixth grade reading buddy. And Jason loved spending time with his each week. At the end of the year, the 6th graders sang this to the school and Jason cried. It was his was to say goodbye to his friend who was growing up and moving on. I am amazed that this song, sung by his school community could help him learn to deal with loss and sadness at age 6. I struggle with this at age 43.

https://www.youtube.com/watch?v=7LQdiLzjks8 .


So I have to ask. What obstacles have you overcome? I mean, seriously, look at yourself. The effects of events in your childhood, might be things that no longer rule you. I bet there are things you thought you would never get over or heal from, that you have. I know that healing is limitless. Just because you might still have to deal with the effects of some things long past, doesn’t mean you are defined forever by it. You have great things in your life today. I know it. Do you? There are great gifts of love and life in store for you. I know it. Do you? You have succeeded and tomorrow you will too. You are the absolute center of somebodies world. You are so loved. I know it. Do you feel it? Will you let yourself? Are you aware of where you are stuck and where you are now free? Believe that I believe. What colors, images and words would you pick for your infographic? What will you choose? Just sayin…
















July 10th, 2003 & 2016

July Tawpic for the Day: Discuss

Image _1 for july 10

Yikes! This one’s a doozy. I can’t play the victim if I believe this to be true. And I have played the victim. I have wallowed, for years and perhaps decades, in the injustice and powerlessness of the 10%. I was victimized by the events of my life and donned, even clung to the labels and events as all I could ever be. I could go way back to childhood, but there is no point. I am not a child. I say it all the time, “No child asked to be born.” We are brought here and are subject, by virtue of our age, innocence, and immaturity to whatever life dishes out. Adults create a world for us, good or bad, to our liking or not. I learned a powerlessness over myself and my destiny at this time. Joy and pain, gifts and punishments happened TO me. I told myself that the world did these good and bad things TO me and I had to live with ’em. I was powerless over what happened to me and there was no other way. I took this line of bull, to heart. I carried this malarkey, as gospel, into my adulthood. I didn’t know, what I didn’t know. I was rooted in finding the answer to the question “Why me?” Why did I have a stroke? Poor me. It is better for me to live in the simple answer, “why not me?”

My sister/friend and I in college, loved and found great insights in THE INDIGO GIRLS. We loved them and this common bond helped me build a relationship with her. College was a happy time for me. I stopped sitting on the sidelines of my own life. I jumped into college with both feet and no net. I looked to these singer songwriters to help guide me. I got to see them in concert freshman year. It was incredible. The two women, their lyrics and music spoke to me. Their songs gave voice to me. They made sense out of the senseless. I loved that they could do that. In that turbulent angst of young adulthood, my sister/friend and I clung to one song in particular as an anthem. And to this day, the song echoes clearly in my mind’s eye. Watershed. http://musicandlyric.org/indigo-girls-watershed.html


I can still see how the Rachel of those years, was seeking love and connection in her life. When I play “Watershed,” I can close my eyes and know that even back then, I yearned to live life on life’s terms, but hadn’t a clue how. I was big on the questions in life…the big questions.

I didn’t know that I could change how I reacted to the world. And in that change, that movement and action, I would be changed for the better. And those around me would benefit. The ripple effect is powerful. I didn’t see that. I am not sure why. It doesn’t really matter now. What matters is that I did learn about the 90%. I credit my stroke with this transformation. I am a stubborn, Old New England, Irish, thick headed gal. This hard head still doesn’t take subtle hints. My stroke didn’t tap me on the shoulder, and gently suggest that I live my life right. My stroke was the hard blow to the head that I couldn’t ignore. Everything changed. I changed in that instant. I couldn’t ignore what happened to me. My stroke was a stroke of luck. It was the lesson that I needed to learn to live life right. It is my choice today, and each day that I am blessed to have.

Ever since I can remember, one of the truly “good” things that life did TO me, was my Dad reading Charles Dickens’ A Christmas Carol, to our family every year. I knew parts of that book verbatim, long before I could read. He read it. We read it. We went to see my uncle perform in it at Trinity Repertory Theater in Providence. “Bah Humbug” is a favorite year round phrase, useful for countless situations.

I read it to my students most years. One year, I had many staff members read different roles on a daily basis. That was magical. The line that sticks out to me now, the connection I am trying to make to the TAWPIC for today is this: “May you be happy in the life you have chosen.” This line always struck me. Even before I felt that I had any choice, this line got me. It is in Stave 2. The Ghost of Christmas Past takes Scrooge on a tour of HIS own past. He cannot impact, just witness. The Ghost shows him his one true love. They part ways, she tells him these powerful words and lets him go. He is following a path of the almighty buck (or pound) and that is not her path. She releases Scrooge. And until the Ghosts, Scrooge has know no other love than that of money. His choice. This version is worth a full view, but the heart of it is from 5:46 til the end.


As a child of the seventies, I hold the Muppets in the highest regard. For a while, I imagined I was adopted and was really born to the Muppet Family. Yup.   I loved them. And with all the family favorite recordings of A Christmas Carol aside, My favorite is this. And their song, with Scrooge coming to terms, sums up the message for me, of the 10%.



The visitation of the Ghosts for Scrooge is like my Stroke. They came even though Scrooge did not invite them. My Stroke caught me totally off guard and was not in the least bit welcome. Scrooge watches his past, without power to alter the events. He cries out “NO MORE,” to the Ghosts. He doesn’t want to see it anymore. He is really touching the pain of what was done to him and what he did. He doesn’t like it. But the lessons don’t stop coming. He has to bear it, even though he thinks it will break him. We know, and he learns, that our past cannot limit us from loving and living.

I was struck still for years by my Stroke, slowed in my life, forced (I thought) to only watch life pass me by. My Stroke changed everything about me and ripped my foundation out. I couldn’t go back to who I was, didn’t like where I was at, and had no desire to keep it going into tomorrow. I was faced with my own mortality and hated what I saw of my life so far. And yet, I didn’t see a way out or different. No one can go back and change the past. I knew that. My stroke made me get right sized, real quick. And yet it took years to see this as a gift, not a curse. NOTHING in our past is without limitless lessons for our present.

When Scrooge is with the Ghost of Christmas Present he looks in on the lives of those around him. He is not a part of the life. He is, as I was for years after my Stroke, watching life happen to others and himself, and yet in no real way a part of it. He watches others and he is powerless to change them at all. I have felt that. I want to change what is happening in the world. And I know I can’t. He couldn’t go back and fix, redo or erase what had happened to him or how he had reacted. I can’t go back either. No one can. Can they? I don’t entertain deep philosophical dilemmas like that. I can’t afford to indulge in that. And I am powerless over what happens to me or the world at this moment. Aren’t we all, for the most part?

But that helpless void is not the end for me or Scrooge. The void was of my own making. Life is full, not empty. I see that now. The one, two, three punch of The Ghosts of Christmas Past, Present and Future for Scrooge brought Scrooge from the 10% to the 90%. Surviving My Stroke, or I believe any life changing severe disease or loss, certainly makes clear how very little power we have over the events that happen to us in our lives. We are faced with our own mortality. We are faced with how much we are changed by everything in life. And that is not a punishment. That is a gift. For in that understanding is 100% of a life, second to none.

What I do with what life gives me, is the key. I can’t go back and change things, good or bad, and I don’t want to anymore. But I can hold sacred my history and learn from it. I cannot control what those around me do or what happens to them right now. Even if I am right next to them holding their hand, they can be hurt. But I can be a part of life today. I can contribute. I can do something for others. And I can’t predict, or even really prepare for the totally unknown tomorrow. I know that. I have learned that the hard way. Anyone who survives, knows that powerlessness over the future. But I have total choice, with a lot of daily practice and the help of my Goddog, over how I react to the events in my life. Survivors, like me know, the totally unmerited gift of today and each day we are given. It is a gift to be alive today. So many beloved do not have that gift. They are my angels. It is futile, and dangerous for me, to presume to ask why I have this gift while they do not. I am here to do and speak, for them. When I keep it that simple, I’m good. What am I meant to do today? Who am I meant to help? The Indigo Girls’ song tells my story. I tried to fly “as the crow flies.” I “stood there and agonized.” But now, I am “learning to face, that path at my pace,” and loving “the country mile.”

July 10th 2003

INR was 1.7 on Tuesday. So everyday I need to take 12.5 mg of Coumadin. I don’t feel good. I am just so tired. My swallow is doing great. I should be happy. But if I swallow like normal, they will take Carole away from me. What will happen then? What do I do then? What is the plan for me then? How do I get back to my life? Does anyone know, because I sure don’t. Does anyone care, because I am not sure I do.

Mom is still down the Cape for her vacation. She comes back on Saturday. I can’t believe it has been two weeks. She sounds like she is resting, enjoying sun and sand and peace. We haven’t had that much rain, so I go over to water everyday. But I am not going today.

There is no good news in the mail this week. The phone calls aren’t that great either. They want me to go back to school in the fall. This fall. I can’t do that. I nap during the day. I sound like a freak and look like one too. I can’t really read right now. And I can’t even walk across a parking lot without sitting and resting. How can they ask me to do this? Don’t they realize what happened? I had a stroke for God’s sake. I might not get any better ever, let alone in a month. What am I going to do? I filled out paperwork and brought new documentation downtown. They smiled at me when I passed it in. I think they were whispering about me when I walked out. But maybe not. I am not really worried about it either way. I mean, I know I can’t do what they want. My Doctor’s say they will help me make downtown understand. I don’t really care if they understand or not. I don’t see “Miss Scanlon” teaching this fall. It’s just not going to happen.   I don’t even know “Miss Scanlon” anymore. Who is she?

So I took care of the paperwork for downtown and I saw Carole two times this week. I had Physical Therapy once. I did better on the lunges and squats and even some balancing. I really did better and they are proud of me at my hospital. They see how far I have come. They tell me I am strong and that they think I am great, not I am “doing great.” They make me believe I am great today, while I am with them at my hospital.

I can’t do the jumping and running this week though. I just feel too heavy, like a big anchor is around me. You can’t see it. They didn’t see it. But I swear, it’s there. I just can’t power up that much. I have been dizzy for no reason, except maybe the next stroke is coming. I am so tired all the time and just not really into pushing myself. I wasn’t this tired last month. I don’t understand why I am so tired. My jaw is wicked stiff on both sides. It is getting worse. Oh well. I will have an extra nap and cuddle with Ciro.

I don’t want to and can’t exactly, cuddle with Lola this week. When I took her in last November, the vet thought she was fixed, a dog her age, in good condition…ya di, ya di, ya da. But not so much. She is in heat. I have never had a dog before. But even I recognized what the whining, moaning, blood, bum wiping on the floor, and extra need to be near every male dog in Worcester meant. Ugh. I took her to the vet. I wish I had put a towel on the seat first. I spent an hour scrubbing the passenger seat after we got home. It has been a long, long week. The vet confirmed that she was in heat. Duh! And he said that we can’t do the surgery until the heat is totally over. He scheduled it for July 10th and so today is the day. I was all for the surgery, but money is so tight right now. The vet told me about a scholarship type thing to help pay for the spaying. I filled out the paperwork. And I got it. I got the help. Lola can get the surgery. I guess I am getting good at paperwork. I guess some people want to help me keep my angel puppy healthy.

I dropped Lola off at the vet for 8:30am. I know she will be fine. She is young and healthy. But the pit in my stomach doesn’t seem to know what my head knows. I am lucky to have Carole at 9 o’clock and Kelly at 10. Keeping busy will help. By the time I am done with my hospital today, I can swing by and see how Lola is doing. They told me they would call when the surgery was over, but I want to go there in person. I need to.

She came through just fine. They shaved her tummy, but it is summer so the fur won’t be missed. It will grow back. She licked my hand and smiled at me when I got her. I love her. I can breathe now. The vet says NO STAIRS for Lola for two days. I have to carry her up and down and let her do her business only in the yard for that time. She is light and I am stronger. She is my angel and I can do this, for her.

I get her home with no problems. Ciro gives her a good once over to make sure she is ok. Zoe hisses at her as she smells like VET. I take Lola to bed with me and am glad to finally rest. I do rest better with Lola. I feel safe with her.


July 10th 2016

July 10th is the my dear Godmother/teacher friend’s anniversary. I think it is 16 years today. Wow. That is remarkable. I was a bridesmaid for her. I knew it then, that they were a meant-to-be-couple. I am so grateful we have stayed friends. I wasn’t much of a friend for a few years. But she didn’t give up on me. She loves The Wizard of Oz. Last week, when I was out shopping with Jason, I got her a mug with the characters on it. I know it is a couple anniversary and I only got one mug, but the groom won’t mind. He knows I am a nut. He knows I love his wife. And my friend loves coffee. She has the jumbo grande Keurig.

I will give it to her on Tuesday. On Tuesdays, in the summer, Jason and I go swimming at her house. I love it there. I have gotten to watch her beautiful daughters grow up. I know who likes root beer and who prefers orange soda. I know the actress and the basketball player, who loves TMNTurtles and chocolate and she who prefers marshmallows.   Rain or shine, we have fun together. As soon as I walk in the door my teacher/godmother friend offers me a fresh cup of coffee. That is love. I am grateful.

This summer we have had a couple of rainy, cold Tuesdays so far. OK by me. I am working on being a better friend to her. Rainy days with coffee, is a good time to practice. By “better friend,” I mean I want to give her a chance to talk about her year more. We see each other every day at school, but don’t really get a chance to talk. It’s all about the kids there. Imagine! My beloved friend has had some big, unexpected things happen to her this year, and not what you would label as “good.” I think she is doing well and healing. But I want to let her talk. I want to be there for her.

And she is there for me too. It is crazy. I shared/communicated with her. I knew it helped other people and thought that after 20 years, I could probably trust her. So I talked and she helped. I really had no expectation that it would help me. IT just seemed like the right thing to do, so I tried. It worked. I feel better. I feel like a better friend. Who knew? “Life is crazy,” as Jean Granny would say.

I think the good words on Mr. Rogers, in the last entry, are working in me. I watched that show as a toddler. I remember my mother’s big bedroom overlooking the Connecticut River Valley. She had a small black and white television under the windows. Sesame Street came on first. Mr. Rogers followed and a spectacular sunset rose out the windows every night as the Electric Company came on next. After that, Mom would call me down to the big Victorian kitchen for supper. Everyday it seemed that Mr. Rogers spoke right to me, in that room. I remember nodding, and smiling and singing along with him.  The friendship-communicating-being a good human-thing seemed simple when it came from him. He spoke in simple terms and what he did seemed to reap good results. The show had the land of Make Believe in it with a King and a Queen and a Prince. They were a beautiful family. I think I left the simple lessons about life in his Land of Make Believe.  I overcomplicate things. I never practiced the basics. But this week, Fred’s words and message and my memory, clear as day, of simple smiles in his neighborhood are ringing true.

I am on this communication binge, not venting and spewing big ole’ emotions, but sharing a truth and inviting connection. I know that I need people. I learn how to be a better, happier me, from people. Honestly, alone I am screwed. The bat cave of my mind offers no good to my life now. Been there, done that. And summer vacation is a good time for me to put energy into trying new things. It is a good time to practice new habits and try to make them stick. It always pays off when I pay it forward. (That’s a good line. Make a good Bumpah Stickah for my cah.)

So, I in addition to my 21 year friendship, I am also blessed with a new(ish) friendship. She is an incredible woman, the mom of one of Jason’s friends. And I am so clueless about how to be a friend. I missed that day of pre-school and I napped during that Mr. Rogers. But this lady makes me laugh and I love getting to know her. She is an amazing survivor too. We can each say a sentence about how we are feeling on a given day. No one else in my life gets it from the inside out. They don’t have to, and I wouldn’t want them to. They just don’t understand what I go through, because of my stroke. But she does. We can support each other with so few words. It is amazing, and relaxing. I breathe deep around her. I hope she feels the same.

I spend a lot of time trying to be “normal,” just like everybody else. I try to forget my stroke stuff. It never works. I can’t forget myself anymore. With this superhero- survivor friend, being myself IS normal. She gets the fatigue, lethargy, and anxiety of what some call “invisible illness.” We both look normal. Hell, we both look good. But we have stuff going on that most don’t get. Knowing that she understands is a gift. I am gentle with her (even though I know she is supah-strong). Gentle is not normally in my skill set. Bull-on Truth Serum-in a China shop, is probably a more realistic description. But with her, I am gentle by nature. I see what others don’t and know that her daily reality can be rough.  In doing so, I am reminded to be gentle with myself.

Our son’s hit it off and then we seemed to as well. I think she kind of likes me too. Who knew? We had a chance to have a play date for just us last week, without our kids. Yikes. What would we do or talk about? I didn’t think too long about it. I just dove in and went for coffee. Coffee makes friends. Well, coffee makes me able to talk to my friends better. Ha! I made a point of mentioning that it was the first time we were hanging out without “the boys.”

And there it was. For me, it meant that we were there to be with each other. We were friends. I had outed myself that I care. We matter to each other beyond our kids’ relationship. That was a very cool moment. It is so much fun to put myself out there a bit and get to know her. What a blessing in my life and my summer.

Along with this communicating thing, I got going on, I am also on a clearing out and organizing bender at home. I tackle this cleaning house thing, every summer. I can be a pack rat. I won’t call myself a hoarder, but there is a tendency towards accumulating “stuff.” So, every summer I make a big list of big jobs and little ones that will make space in our home for the new school year. Jason’s room was particularly big and extensive part of the list this summer. The kid has “stuff.” I mean, lots and lots of “stuff.” And yet, there are so many times that this child comes to me, or Tim and says that he has nothing to play with. He has nothing to do, as he sees it.

These words ringing in my head, set in motion the big-room-redo. We cleared out, sorted and organized stuff. We moved furniture. But this only child, (me, not him) needed more. The room needed a focus. And Jason loves Harry Potter. So we set forth on that path. And I went hurtling down the path. I admit, I get fixated on something and I get really into it. (This particular project gets me. Shouldn’t a kid love their room? And shouldn’t they feel safe and yet inspired in their room?) I moved in my Dad’s chess board to grace the castle walls of his room. The pale green picture frames of his “nursery” are now bronzed and filled with his artwork. And it’s really good stuff. Seriously, and to brag a bit, the kid is good.

Tim and Jason gave me the go ahead to make one wall into a stone and wood looking wall, according to the castle in their books and my mind. And I got started. I had a vision in my mind’s eye, but the “mens” don’t have access to that. They would have to believe that it would end up looking great. Progress was slow. Materials were out of stock. They had to be reordered. Some were not even being made anymore. The vision had to change. Jason had camp. And then the Cuzzin came, and the room progress hit the pause button.

With the 2 legged Cuzzin came our 4 legged Cuzzin. Zev is the biggest greyhound you ever saw. He is jet black in color and built to run, (or at least look like he could.) They are quite a striking twosome. My cuzzin is about 5’1″ and she definitely makes the greyhound appear larger by comparison. I guess the same goes for me and Gus. I am 5’6″ and my Goddog is only a foot or so tall. My height might make him look wider by comparison. You know I mean this with all due love and reverence to Gus.

Anyway, Cuzzin and Jason bunked together for a week. (Thus progress on the Harry Potter Castlesque bedroom was delayed. I did do quite a bit of the wall, in the evenings after supper. I couldn’t help myself. And my family understood that I had to do it. After the Cuzzins left this week, Jason and I wrapped up the bits and bobs that were left to do. We played music loud to fill the now emptier room, after they left. We busied ourselves with finishing the room to take our minds off missing our cuzzins. And the room came together and we all love it. Jason himself is putting things away properly. He even reads everyday in his armchair, in the reading nook, under the loft bed. I know it is only a few days, but this is good stuff. )

So Cuzzin had brought what she thought was the twin sized inflatable bed but turned out to be the queen sized bed. It covered most of the available floor, but worked great for both 2 and 4 legged cuzzin. Meant to be. She brought a dog bed for Zev, but Gus was the only one who used it this trip. Image-2-for-7.10

Too cute. Jason has never had to share his room, except with his cat, Rondo. So I wondered how it would go. Honestly, I worried about how it would go. I began to fear the worst. (That is my nature too.)

Brilliantly is the answer to that question. Jason loved having a roommate and I think the Cuzzin did too. They chatted together secretively, shared stories only they knew, hugged and hung out there without the rest of us.

And I wondered for Gus. He was used to being an only dog. He enjoyed going on walks last year around the hood, with his 4 legged cuzzin. But I knew this year he would be left out of our real hikes, not in his nature to exert that much. Would he be ok or become irritable with the greyhound? He was fine, of course. What about me on those hikes in the woods? I had to go and be a part of the fun. I need the exercise. But I can’t breathe well, my nose runs and if we go too far, I get wicked fatigue that no one understands. Guess what? I told my cousin I wanted to go on the walk, but I had my limits. I took wads of tissues and used ‘em when I couldn’t breathe. And guess what? Jason was the one most tuckered out by the walks. He sat down on a rock and requested that we turn back. Ha! We didn’t. We get going and it was great. The next day, Jason stayed home with Tim. Cuzzin and I had a great walk just the two, or three of us. And afterwards she treated me to a Coffee Coolatta with Whipped Cream: quality cuzzin time rocks. (Dunkin Donuts is few and far between in Tennessee, so Cuzzin had to make the most of the Coolatta up here.)

Last year Rondo spent the entire visit in the attic. I had thought he would play with the greyhound, maybe even try to ride him like a jockey. But he was apparently scared and retreated above. Ciro was not afraid and held his own with no issue. This year what would happen? Guess what, Rondo changed. He was a bit skittish, but turned fear to curiosity pretty quick. Who knew? Everyday we all met in the kitchen. We each put our two cents in about what we wanted to do that day. And we each joined in as we pleased. Everyone got to do what they wanted. Ciro oversaw the daily planning times on top of the butcher block. Our kitchen and Ciro purred with the activity. Cuzzin said that our house was “joyful chaos.” That is one for the “good memory department.”

And so the week went as it should. It all went so much better than I imagined. It all went the way it was supposed to, I believe, even with all of us involved. I have said before that my default setting is isolation. But my heart lives when I am with others. My “good memory department” was filled and now gets filled with sights sounds and smells of times like the week we had with the Cuzzins. Everyday I am blessed with a home filled with my two and four legged beloveds. What a gift. What I have everyday is beyond my wildest dreams of 13 years ago. And still, I have dreamed of and craved and wanted more.

My heart knew it would work adding the cuzzins in for a time, but my head was negative-Nelly. I was worried. I talked to my teacher/godmother about my stupid fears. I opened my mouth and told her. She listened and answered and helped. She told me how all year I talk about my Cuzzin and miss her. Here with me, she would be for a week. I was getting what I wanted. Enjoy.

And I did just that. I was worried that 2 dogs, 2 cats and 4 humans (3 of which are only children) would become a volcanic ruin of angst and impatience. My mom downstairs, makes 5 humans, and one more only child, to the mix. I was scared. I was getting what I wanted, but could I handle it? I wanted to be near my family, but would they want to be near me? Would we all be too much for each other?

As usual, my questions are ridiculous and impossible. I can’t think for others, as much as I try. I can’t predict or control the future, as much as I think I can. My angel, Jennifer is right again and her words echo in my mind. “I am just not that important. It is not all about me.” Thank God. This time, however, my practices were heart felt. I owned my behavior and feelings and let others do the same. Not perfect, just ask my family. But better.

I set out of with the unspoken, slightly unknown to me until now, intention of creating something for the “good Memory Department,” that Gramma Harriet taught me about.   I wanted memories for me, for my Cuzzins, Tim and most of all for Jason.

I didn’t want to miss the chance. I know through experience, my stroke has taught me, not to assume that there is a next time or a tomorrow guaranteed. My stroke teaches me to make the most of today. So if I say I want family and it is important to me, I better make room for it in my life. I better enjoy it today. Why not? I don’t need the threat of any future disaster to get me to cooperate with joy today. I can spend time with my family like I imagine “normal people” do or as I know I want to. I can do it today.

My Cuzzin and I were so close for a long time. We would redecorate our houses while on the phone with each other. We talked everyday. She was huge in my life for a long time. When Tim and Jason came along, my Cuzzin got new family. She loved them and they are close too, especially her roomie Jason. But we had less time one on one, very little in fact. Good, wonderful things were added, but there was a loss too. During this week, we got it back. I didn’t realize how much I missed it until we started writing country songs together. Well not really writing songs. More like this, my Cuzzin and I would say random comments about the day, our activity, each other and our dogs. The lines we spoke always came out like country music lyrics. It was all day, everyday, and we laughed. Before we had loved together and bonded over folk music and soul, but with Cuzzin’s move down south, country music is getting its nod. Music always has a sweet place in my family.

And sometimes, for me, the music just says more than I can say. It captures what is real and important and tells it when I have no words. I don’t understand how it works. I can’t predict when it will happen. I don’t need to. I am just grateful for the music in my life.

In high school, I fell in love with a folksinger song writer named Nancy Griffith. I thought of her then as being in the realm of country music as well as folk. She was fabulous. She wrote songs that got to my heart. I couldn’t believe that she could put words and beautiful music to what was in my heart. I loved that she covered the songs I grew up with. A “good memory department” moment for me was the folk music I heard in my childhood. Its roots are deep and they are my roots: the music of the working people, telling of everyday strife and triumph. Grit!   I loved it. Pete Seeger in particular. I saw him in concert with my Dad. I was happy when the music played. Peter, Paul and Mary too, Bob Dylan and others put music and words to a tumultuous time. And while I often had nothing to say to my family and we mutually disagreed on just about everything, music brought us together. Certain songs made us all smile, for no reason. In my teen years, when little made me happy, I found Nancy Griffith or she found me. And this week, she finds me again. Her little of bit of country-lots of soul and folk vibe comforts me. Like writing country songs with my Cuzzin, the music makes me smile. It grounds me. I am centered by her song. I am reminded of how much I have and how great life is.

One of the songs she covered was an unforgettable, powerful oldie, but definite goodie: Wimoweh.

I have known this song for as long as I have memory. What is it about this song? As a child, it made me stop and smile. In the minutes of that song, strife and worry were put aside and we were together and happy. United. That song created a moment of joy as we moved to the song and were moved by the notes. IT is no different now. I can choose to play a moment of joy if I turn off fear and face love.   I can take the moment in my home of “joyful chaos,” celebrate it and make space for more music. I can do that. It is my choice today. I am happy in the life I have chosen.




June 29th 2003 & 2016

June, Goddog Tawpic of the day. Discuss Image-_1--6.29

I hate feelings. And more than that, I hate feeling my feelings. Blech. Ick. And Gag. I know “hate” is a strong word. But my relationship with feelings, mine and other peoples is a crazy trip down a confusing, dangerous and twisted back road with no map and no GPS. Feelings are part of being human, I get that. And feeling is crucial to our experience of humanity. I get that too. But I want to be in control of myself. I want to be secure in my choices. I want to rest in a sense of peace and serenity. Above all, I don’t want to feel pain. Ha. Ha-Ha. A great visual of this is in the movie “The Grinch” with Jim Carrey. Don’t get me wrong. I have loved this story my entire life. My Dad raised me on all things Seuss. I was born in Springfield and so was Dr. Seuss, a perfect pairing. My Dad read me this story and we always watched the original version on television, done by Boris Karloff. The true meaning of Christmas, and arguably, the true meaning of life was unveiled, in its simplest form. And I craved that.
Recently, this scene, very simply spoke to me. The Grinch gets to the top of the mountain after stealing all the toys and Christmas decor from the entire town. And Christmas still comes. When he realizes this, he falls to the ground and cries, “I’m feeling.” It is an unknown, uncontrollable, new, fulfilling and yet horrifying experience.


That’s me.
I have thoughts in my head and feelings in my heart about any given thing in my life. Most times, I have several opposing thoughts and feelings about many things going to work inside me at once. It is crazy and exhausting. The chaos bashes around my insides during the day and continues the bumper car velocity at night. Very restful. NOT!
At times, I have a better sense of balance and cooperative working relationship between my head and my heart. (When I know more, I do better.) But then life veers off down a totally different road. Life on life’s terms, not Rachel’s comes into the mix. When that happens, when life happens, I have to bring heart and mind together, or suffer the consequences. I have to walk through the feelings, if I want to be in right relation with myself or my fellows. And I can’t do this alone, in isolation or in silence. My humanity, and happiness, comes from my relationships (Dammit, as Jean Granny would say) with people (or 4 leggeds or nature) and being with them. This requires me to know my own feelings, be aware of the feelings of others, and work with and on the feelings. All of this is possible when we, as Mr. Rogers said “talk about our feelings.” Ick and double Ugh. I have to feel them and then talk about them like a human bean…terrifying to say the least.
As a child, my “feelings” would get hurt by adults and situations far beyond my control. I would hurt. I didn’t like hurting and had a hard time avoiding it or making it stop. I felt powerless over the situation that had caused me pain. I felt powerless in the face of adults, as I think most children do. I tried to make myself feel better, but my skills were minimal. Sure, I would and did scream, pitch fits and tantrums to beat the band. I was impressive in my theatrical display. But that is mostly all it was. I didn’t know what I was really feeling or understand what was going on inside me. I didn’t have many words to express the truth about Rachel. What little truth I had, scared me. So I kept it inside. That was it couldn’t scare you off and wouldn’t let you see how lost I really was. Ultimately, my childhood translation was, “feelings are bad.”
As an adult, leading up to my stroke, I think I did pretty much MOTS, (More Of The Same). I loved passionately and deeply, but without awareness of what was healthy for me or others. I didn’t know what I didn’t know. I didn’t really let people get very close to me, because then they wouldn’t “like” me. I played a lot of roles, trying to be the best version of me that you would love. I thought feelings had to blare like a siren, boom like fireworks on the 4th of July and whip me around like a Cyclone Rollercoaster at 6 Flags to prove that I was really living. I thought feelings had to be that grandiose and I didn’t really like that. It was exhausting.
When my stroke hit, all bets were off. I didn’t understand what was happening to me. I didn’t want to. I didn’t want to change, but I was already forever altered. I was so desperately lonely, but couldn’t reach out. I was alone and dying inside, believing that if I couldn’t fix myself, I couldn’t be fixed. I believed I was broken and just waited to die. When I didn’t die, I realized I had it all wrong. The answers, the joy of living, was not inside me. It was in my relationships with others. Through them, I would learn about my feeling and be healed. With them, I would grow and change. Because of them, I could understand myself and my feelings. And it would all make sense. Well, sometimes it makes sense.
My dear friend and mentor pries my feelings out of me and gets me to talk about them. It is like pulling teeth, and about as much fun for both of us. My “belly barometer” as I talk about it with my kids at school, goes off. There is something going on with my feelings inside me. And it needs to come out into the light of day. Whenever the feelings come out, I feel better. Just getting them out is a vast improvement, for me. When I talk about them with a trusted friend, I find answers. I grow. And Barbara says it helps her too. Bonus.
One day, after a particularly emotional extraction, she said, “Rachel, your head won’t explode, if you open your mouth.” That was a revelation and a half. And like all great ideas, I quickly copied the sage words onto a scrap of paper and stuck it on my fridge. All the most important things in life are stuck to my fridge, or in my fridge in some form.

When she said those words, I knew truth. I knew I was human. This simple fact has eluded me for much of my life. And I understand that working through my own feelings, all by myself, hadn’t gotten me great, joyous results in the past. In fact, I usually wallowed in a miserable isolated pile of poison, bursting with the feelings inside, but damned if I let them out. My head was exploding. And that hurt worse than any feeling ever could, because I was alone and unchanging.
So in the moment that Barbara spoke those words, I knew that opening my mouth, telling on myself about what I was feeling, prevented a sort of toxic death, if you wish. It was that simple. It is that simple. Once the feelings are out of my head, I feel better. I don’t have all the answers. What a relief. And you still love me. Better yet, you help me. Best, I help you. And so together with her, my loved ones, and my Goddog, we travel the “Broken Road” together. Together we find answers and peace comes. (right here, I gotta put in another plug for a Rascal Flatts tune. Tim and I loved this one right from the get go. We knew it was truth. It said what we were feeling.)

June 29th 2003
My INR, blood levels, are low, 1.4. So my Coumadin dose is 15 mg, 12.5. 10, 12.5. and 10 mg for each day of this week. Mom has headed off to the Cape for two weeks. I will be taking care of plants and mail. The kitty can go to the cottage this year. The indoor plants only need watering once, I think. The mail has to be sorted and moved away from the mail slot. The garden will need to be watered almost every day if we don’t get rain soon. I am just too tired and stressed to go every day. But I will try.
Every year, for as long as I can remember, my Mom rents a cottage on the Cape for two weeks in the July. It is near where my Cuzzin and Gramma Harriet live. The cottage is in a quiet, private community on a dead end street right near the water, 5 houses exactly from the private beach. She needs to go this year and be near the ocean and relax and enjoy herself. I told her that I can’t come down because I don’t want to be far from my hospital and I have to continue with my therapies. That is what I have to do right now.
I had to stop in at Dr. K, my neurologist sent from heaven, earlier this week. I don’t have the appointment to go over the results of the MRI until today, but I had to see him. I was so scared. It was after I got my bloodwork done at the hospital. I needed to see him. So I stopped in and they let me see him.


The upshot is that he doesn’t think I have had any TIA’s or another stroke. He reassured me that I am really doing very well. He told me I should stick with all my medications and therapies. I really don’t like being on the meds, but he says that with the anxiety right now, I shouldn’t make any big changes. He told me what symptoms to look for if I was worried about TIA’s and that if I had them, I should call him. He made me feel better. I breathed better just waiting for him. And I relaxed just talking with him. I was safe with him. But when I got in my car and left my hospital, the feeling left. Dread replaced reassurance in the parking lot.
And so today, I got the results of the MRI. I went back to my hospital and I told Dr. K that I really didn’t like the place I had to get the MRI. It wasn’t nice and I hadn’t felt safe. Would that affect the results I wondered? Had I damaged myself with the stress that day, I thought. But I didn’t say.
My beloved neurologist tells me that I have NO BRAIN DAMAGE. He said it and I believe him. My brain is good. He said that I am healing from the stroke. He said the artery is opening a bit, but still narrowed. The doctor who did the MRI at that place wrote, “Persistent subtle area of narrowing for a 1 – 1.5cm. segment in the distal left vertebral artery as it becomes the basilar artery.” The news is good, says my doctor. I am doing so well. I have come so far. My recovery is progressing so well. He tells me this. I believe him and smile, a real smile, in his office. I tell Kelly at PT that this is the news and I smile with her too. But once I leave my hospital, the smile leaves.
I know I should feel happy that I have no brain damage. When I call my mom later, I will happily tell her the news that the Doctor told me. But I don’t feel happy. I feel lost. I am so tired of worrying about the next stroke and everything else. I worry all the time. And for what? What is there for me? Who am I anymore? If I don’t have brain damage, if I am recovering so well, why am I so messed up? Why don’t I feel like me? Why am I so sad? If my brain is so great, how come I feel like I want to die?

June 29th 2016
Jason is at camp this week. I am a teacher who has summers off and was blessed with a family a bit later in life than most, so I want to spend the summer with my family. But 24/7 is cuckoo bananas, too much of a good thing. Plus, his Hanmi Tae Kwon Do Studio does 7 weeks of summer camp, each with a theme. Last summer Jason spent one week at the Olympic Camp. From 830am to 430pm he played in the sun, swam, read, ate well, had 2 classes a day and joined a team and competed in the Camp Olympics on the Friday. It was great. He had a blast. But it was not MY first choice for the week. I had read the options to him over and over, with special emphasis on a certain week. But Jason was very vocal is his choice. He wanted the Olympic week.
This year, his feelings changed. He made his Momma v. happy. This week Jason is taking the Weapons Week of camp. He is learning about and working with Nunchucks and Bow Staffs all week. What a gift! To learn in safety, with respect and yet get to really use the weapon…that is the best. My dad taught me about firearms, the same way. If the studio allowed Moms to go to camp, I would. But they don’t. So I must find my own way to transition from school to home, spring to summer, work to vacation. It is not easy and I resist change. My week of Jason at camp looks like this:
1. Jason’s room redo.
His room is a death trap. The 12×14 foot room has seemingly shrunk to 5 x8 feet. The STUFF in room creeps ever nearer to the door. The STUFF is in massive towering piles. We are unsure if anything is living in the piles. Could be. Certainly, Jason doesn’t want to spend time in there. So we are redoing it. Jason and I spent the better part of last week going through books and cubbies and toy box and closet. We sorted everything. He chose what to keep and what to give away. Actually, his idea is that we have a tag sale and sell those things he has outgrown. Great idea! Not sure whether we will honor the idea that Jason keeps all the proceeds of the sale. We’ll see.
He is an only child, sort of. I was too, sort of. Anyways, I want him to know what is in his room. I want him to love his space and feel proud of it. He has the big bookcase that my Dad built for me. Now he knows what treasures are actually on the shelves. He has the duck painted toybox that was my aunt and dad’s. His baseball gear fits right in. I want him to be a part of decisions about his STUFF and SPACE. We are NOT moving his loft bed. But we are moving his desk. We both survived the weeding-out phase. There were numerous heated exchanges. And there were many time-outs taken to cool jets and regroup. I definitely need more time-outs than he does. I take mine in the kitchen and bake.
So this week, while he camps it, I do some transforming of the room into Hogwarts-style-castleness. My love of antiques and inclination to all things British, thanks to my Dad fits right in with Jason and Tim’s love of Harry Potter. I will do the grunt work on that and love every minute of it.
2. The Garden beckons and I better listen
We decided to do the teepee this year. We built it and put all the plants around it. And believe it or not, it’s growing. I can’t believe it is actually growing.


I water every other day with the sprinkler, if it doesn’t rain. I have found, finally, just the right spot and setting on the sprinkler that gets flower beds and tee pee at once. I learned that if Jason stands at the water tap and I have the sprinkler, I tell him to turn the water on after I have set the sprinkler down and walked away. In the moment, I can see if the sprinkler is watering where I want it to water. If it is not in the best spot, I call to Jason. He turns the water off, I move the sprinkler and we try it again. Last year, I rarely watered because I didn’t want to be in the backyard with the workers from he**. And when I did water, I moved and adjusted the sprinkler while it was on. Yup, I was too lazy to walk to the tap myself and too stubborn to ask for help. The result was, I got soaked and severely pissed off every time I did water. I was sure the sprinkler was broken. It never watered properly. Amazingly, this year it does just fine. There are even baby spaghetti squash.


I talk to them every day, the way my aunt in Wessyfoo does. I help and encourage them to climb the teepee. But some plants are so big already. They said not-so-much. So I moved the little fence surrounding the teepee, that is supposed to deter the bunnies from munching my growing goodies, back a bit. Now the big plants can run on the ground if they like.
The bunnies don’t seem to be after the veg, yet. But something ate the strawberries. I was weeding the raised bed, with my gauntlets on to avoid another itch attack, and saw so many berries that were just about ripe. I told Jason that after camp in a few days, they’d be ready for a nice al fresco nibble. Evidently some critter agreed. The berries are gone and not into Jason’s belly. I think it might be skunks. Gus tells me, and we have seen a skunk around and under our shed in the evenings. Every time Gus goes out in the back yard, he first goes and sniffs around the shed. Then he turns and looks at me and says, “they are sleeping now. It’s ok to be out in the yard.” When we come home after dark, we talk loudly in the driveway and shine lights around til we make sure the skunk is not about. A few nights ago, I looked out and saw a skunk mass going down the walk from the shed. By mass, I mean that it looked like a mantaray sort of undulating along. I blinked hard and saw that the mass was the momma skunk, flanked by 2-3 babies. They stuck close to her and moved as one out from their home under the shed to find food in the night.
When I saw the place in the strawberry bed, where the strawberries used to be, I thought that maybe the skunk babies had feasted on the berries in the moonlight. I smiled at the idea of that feast. And when I told Jason, he agreed that our skunk babies were welcome to the berries. But I want the veg. So far, so good.
3. Goodies for Fran Farmer
One of the blessings of summer is the farmer’s market. On Mondays and Fridays, Fran “The Tomato Queen,” is there. She proclaimed herself the Queen and I agree. Her tomatoes are the best. Ever since I found her, I don’t even try to grow tomatoes. Why bother? She does it best.
I love to go to her stand. She is in her 80’s now so her daughters or granddaughter are there to help her with the market. I bring Jason, most days. He picks out a pickling cuke to eat, right there are several to bring home until the next market. I love getting swiss chard right now. Fran told me how to cook it just right. So delicious. I never thought I’d love that particular veg the way I do now.
I don’t go to market empty handed though. I am my Gramma’s granddaughter. I bake for her. This week, she has rhubarb. You should see it. The bright pink wands practically glow. I never loved them either. But I talked to Fran and my aunt and googled good ways to use the rhubarb, sometimes with Strawberries or Blueberries. So this week on Sunday night, I made an apple rhubarb cake with a crumb topping and brought that.

Miranda’s Apple Rhubarb Cake
2 cups flour
1 teaspoon baking soda
1/2 teaspoon salt
1/2 teaspoon ginger
1/2 cup butter
1 1/2 cup brown sugar
1 egg
1 cup sour cream
1 teaspoon vanilla
1 1/2 cups chopped fresh rhubarb
1 cup apple, peeled and chopped into 1/2 inch chunks
(Rhubarb only option – replace apple with additional cup of rhubarb)
1/2 cup sugar
1/2 cup chopped walnuts
1 teaspoon cinnamon
1/2 cup rolled oats
2 tablespoons melted butter
(can also add chocolate chips)
Preheat oven to 350 degrees F.
Mix, flour, soda, salt & ginger and set aside. In a large mixing bowl, cream together butter and brown sugar. Beat in egg. Beat in flour and sour cream alternately until blended. Mix in vanilla and rhubarb. Spread in a greased/floured pan (either 9 x 13, bread pan or bundt works). For topping, mix together sugar, nuts, cinnamon, oats and melted butter into a crumble. Sprinkle over top. Bake at 350 degrees F. for 45 – 55 minutes.
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Preheat oven to 350 degrees F. Mix, flour, soda, salt & ginger and set aside. In a large mixing bowl, cream together butter and brown sugar. Beat in egg. Beat in flour and sour cream alternately until blended. Mix in vanilla and rhubarb. Spread in a greased/floured pan (either 9 x 13, bread pan or bundt works). For topping, mix together sugar, nuts, cinnamon, oats and melted butter into a crumble. Sprinkle over top. Bake at 350 degrees F. for 45 – 55 minutes

Yum. Last week, I used her dill to make our beloved Dill bread. Each day at market with Fran is a gift: to eat her veg, chat with her family, and share a sweet treat. Life is good. I wonder when the potatoes will come. I love Fran’s potatoes dug fresh. Nothing is tastier. But I mustn’t rush the summer. They will come. I will try, to be patient.
4. Be Proud, but thoughtful and recover from tubing.
One of the great gifts of Jason being involved at Hanmi Tae Kwon Do, are the friends that we are making, as a family. Our children take class together and we parents watch together and chat together. Over time, Tim and I are making some really wonderful friends. And it is not easy for me to make friends. I get so insecure and goofy self centered about the whole thing. I think Tim finds the social part difficult too. But we are both doing it. And liking it.
So last weekend, we were invited to the birthday party of two girls at TKD. They are sisters and were celebrating with all their friends together at a local Ski spot. In the summer, I had no idea as I don’t ski except cross country as a kid, the hill opens with tubing. And All 3 of us were invited to go to the party. The girls’ mom said we all could go tubing. She loves to have fun as a family and her joy is infectious. I had no desire to try tubing myself. I knew Jason would love it and that is appropriate. He is a kid. I thought Tim might try it. He is adventurous. In my head I thought, “Moms don’t need to do this and take chances away from kids at the party. Besides, I might look stupid doing it. And, what if I fell out of the tube, hit my head, yanked my neck….hurt myself. Is it dangerous for me? Could I hurt the artery? Fear”
But I didn’t say any of this. Wisely, I waited to see what the day brought. It was a hot sunny day and the place was great. The young man from the tubing place came around and gave each kid a wristband that would give them access to the tubing. And then he asked about the adults. And strangely, my hand went up. Tim’s did too. And we each got a bright yellow wristband, kind of like a hospital band, but totally different.
I wasn’t sure if I would do it. But at least I could if I wanted to. We walked over to the area and again, I followed a couple of friends and the kids over to pick up a tube. I wasn’t really thinking I would do it, but the smiles and anticipation and eagerness of parents and children lured me. Tim was right there too. There was a conveyer belt thingy that we could stand on and it would bring us up the hill. Uh oh.


I tried. I really did. I stepped on it and right away lost my footing. The loss of balance really threw me. I couldn’t get my footing. But I didn’t fall down and I didn’t turn back. I looked at my mom friend’s face, who was turned to me. I stepped to the side and walked up the metal walkway aside the moving track. She asked me if I was hurt. She asked me if I was ok. And I answered honestly. Who Knew? I told her that I could get my balance on the conveyor thingy, it was a stroke balance thing. But I was walking up. No worries. She smiled at me and said it was fine, no worries. And it was. There was no disdain or looking down on me for what I couldn’t do. Her smile made me feel safe. Who Knew?
So I rode(walked) up the top and got in my tube. I somehow squished my big self into the smallish tube. I grabbed the handles tight. And when the buzzer rung and the light turned green, I shoved off. All along the run there is a fine sprinkler misting. I guess that makes the tube really fly. That felt good. I gripped my handles and tried not to bash into the side rails. I gripped the handles and tried not to turn backwards. I don’t want to go backwards. That is scary. So of course, I did turn backwards. I held on tight and slid to a stop at the bottom of the hill.
I had done it. I hadn’t exactly enjoyed it. But I had done it. I had to do it again to see what I actually thought about it, now that I knew what to expect. I got right back into line and this time, I stepped onto that conveyor belt and let it take me right up. I think my mom friend or Tim or even Jason talked to me just then. But I can’t remember that. All I remember is telling myself to keep my balance and then realizing that I was keeping my balance. And then I was so proud of myself. And then I was so grateful to my friends for their help and support.
I did the run again. I felt the spray of the cool water. I saw Tim smile. (Even though I didn’t smile.) I heard everyone laughing. (Even though I didn’t laugh.) I saw the hillside this time. I did it. I even kind of liked it this time.


But I was exhausted when I got out. I guess I got all amped up by this little tube run. To me it was the world’s biggest coaster. I conquered it and now I was spent.
I sat and watched and chatted with parents and friends. I cheered on Tim and Jason and the rest of the nuts who flew down that hill time after time, for two hours.
I enjoyed the party with my family and theirs. And in my heart, I celebrated my victory. But over the course of the following days and seeing that picture of myself, I realize there is work to be done. I tensed up so badly. I think I try to control things and keep myself safe by tensing every single solitary muscle in my body. I talked about faith in my body and Goddog and the support of my friends there at the tube place. But I was still trying to play God. I tightened up real good. Or real bad. My body aches with tight muscles and I am still exhausted. I am glad I did it. I am in awe of the recovery I have made that I could do it. I love the friends that I am able to have now, who support me to be a part of the party. But the next time I do it, I want to smile.

June 22, 2003 & 2016

June, Goddog Tawpic of the day. Discuss


I am pretty proud, and amazed and dumbfounded by what this human body has gone through. And I look around and see folks whose bodies have withstood so much more and they look good too. The resiliency of the human form is awesome. And everyday, I learn new ways to help this body bounce back, mend and heal.

When I read my medical records from the three years following my stroke, it is a surreal experience. “30-year-old woman with left vertebral artery dissection and left PICA stroke. No acute distress. Biggest effort continues to be dysphagia…I would expect it to slowly improve and would certainly hope that her swallowing will recover to the point where she will no longer need to feeding tube.” There are thousands of details describing procedures, disabilities and diagnosis of me that don’t seem real. Until I let myself remember. Then I cry over the pages of notes. My chest aches and my throat fills with a ball of pain as I relive the broken bits and bobs that were me, following the stroke. I went through a lot. I really did. I give comfort to the me that I was then. I couldn’t handle feelings then. But I can now. And in my mind, with all my heart, I comfort, thank and hug the me of those years. The complete betrayal of my body against me, was horrible. The sounds and sights of my illness were disturbing. Whole body systems shut down. The deathly silence of my body was torture for my mind. Parts didn’t work and some still don’t.

For example, breathing works, but not with any ease that I used to have. This body struggles for air, often and in many different circumstances. However, I totally appreciate each and every breathe as I never did before. I am grateful for the struggle. I am grateful for the reminder of where I was following my stroke. I am grateful for how far I have come and psyched for the chance I get each day. So many stroke survivors can not do what I do.

There are things I can do to make it easier on myself. Sometimes my mind cooperates with my body and I breathe better, practicing what I have learned. Pavarotti is a great inspiration for me in this area. Every Saturday as a child, my Dad and I would make bread and listen to the opera, loud, a perfect pairing. We made rye bread, bagels-boiled-then-baked-of course, honey wheat bread, challah and oatmeal bread. I showed Jason a clip of Pavarotti on Valentine’s Day this year and he said that “Grandad looks like Pavarotti.” Another perfect pairing.

Have you ever watched him sing? He can get more air in and let out more music than anyone. His mastery of his body to get that exquisite music out is incredible. As a kid I would watch him sing and count the seconds in between breaths, long long times in between breaths. I never got a true count because I got distracted by his voice. I got carried away and caught up in the moment, forgetting about my mission to count.

Luciano Pavarotti spent his entire career recording with one label, Decca. Their relationship endured for 50 years. His mind and body gave us music for over half a century. I listen to public radio in my kitchen for 10 months of the year. (November – January 6, it is Christmas music 24/7, baby!) WCRB, my Boston radio station, told me about Pavarotti and Decca and how this year they released a 2 CD set: The 50 Greatest Tracks. Impulsive me, I bought it on advance order. It is incredible, in the car, sunroof open, blasting Pavarotti at the lights when neighboring cars offend with blaring garbage, I have the real goodies.

If I want to breathe better, I just pop in that album and do what he did. No, I don’t try to make sounds. That would be a noise ordinance violation. Ick and Ugh. (Actually, before my stroke I had a good singing voice. In high school I sang every day of the week, and loved it. I had the most incredible chorus teacher. A true Italian who taught us the classics. I loved her and her class. And I got pretty good at using my voice well. But not now.) Anyways, I listen to his song. I get caught up in the moment that he and Puccini or Mozart or whoever create. I breathe slow and deep through my nose. I am healed. Both body AND mind are healed. I challenge you with this recording to not be moved and healed and inspired by what the human body can do. https://www.bing.com/videos/search?q=luciano+pavarotti+50&&view=detail&mid=A617D9C4C36A23593919A617D9C4C36A23593919&rvsmid=B46507E6DEF91DCE9C77B46507E6DEF91DCE9C77&fsscr=0&FORM=VDFSRV


If that didn’t work, try it with the words. I double-dog-dare ya to not be moved by this story. https://www.youtube.com/watch?v=_ovcNw8xr64 I just found this very young Pavarotti recording and tried to count the breaths. I failed, but who cares. https://www.youtube.com/watch?v=6dxWA2vqv7U The translation of this aria is as follows.

What a frozen little hand, let me warm it for you. What’s the use of looking? We won’t find it in the dark. But luckily it’s a moonlit night, and the moon is near us here. Wait, mademoiselle, I will tell you in two words, who I am, what I do, and how I live. May I? Who am I? I am a poet. What do I do? I write. And how do I live? I live. In my carefree poverty I squander rhymes and love songs like a lord. When it comes to dreams and visions and castles in the air, I’ve the soul of a millionaire. From time to time two thieves steal all the jewels out of my safe, two pretty eyes. They came in with you just now, and my customary dreams my lovely dreams, melted at once into thin air! But the theft doesn’t anger me, for their place has been taken by hope! Now that you know all about me, you tell me who you are. Please do!

Opening your mouth and heart in the dark, brings hope and light. That is what I hear. And I am healed, body and soul.

With Pavarotti and practice, I can focus my mind on breathing through my nose, if I slow down long enough. I can slowly, and with great abundance of tissues (I should have bought stock in Kleenex 13 years ago), clear out my head. I can shut my big mouth and focus my mind on the simple, but essential work of breathing easily. And it works. I work better when I practice integrating my body and mind. I don’t practice often enough, to be honest. Every time I do, I am humbled by the response from my body. The response is immediate and significant to the care and attention I put into myself. I am grateful and full of respect for this body and what we endure. It has been through a lot of trauma. And I don’t always make things easy on it. It keeps on going and getting better, I believe.

Consider the story of our Jason… My beloved PCP saved me when I had a stroke in her office over 13 years ago. Almost exactly eight years ago, during a routine physical, she remarked on how strong I was, how healthy I had become. We laughed about how I only saw her once a year now, we kind of missed each other. We have lost count of how often we saw each other after my stroke, too often. My Doctor knew I was healthy now and I believed it too. What a miraculous place to be in, for a stroke survivor like me. What a different patient she has than the one she saw on April 4th 2003. I told her about this new man that I was seeing. I told her how wonderful he was and how happy I was. I told her that Lola, my Goddog, had picked a winner for me. I told her that I had told him what she had told me at my physical the year before. My Doctor had told me how extraordinary it was that I was healthy enough, my body had recovered so far, that I could teach full time. She said that the thousands of students I could teach were to be my children. She didn’t believe I’d be able to have my own children, there had been too much damage. (I had accepted this, truly. Acceptance is not something I did much of before my stroke. I fought reality. I denied what was. But I had learned the hard way, the futility of that way of life. Acceptance brought peace. By being present and understanding where I was at, I was free to move forward in new directions. I had space for the future.)

I would be able to teach my children for years to come. What a gift to make such a difference and contribution in the world. I told this to Tim. Actually, I summed it up concisely. “I can’t have children.” But that was not exactly, 100% accurate apparently. Right after that visit 8 years ago, my doctor called with some extraordinary news.

I was pregnant. Me. That’s right, this body had healed and was pregnant. I was floored. Tim was shocked. The impossible was possible. I endured a stroke. I survived illness from my stroke. My body survived even when I didn’t want to. And it was healthy enough, with tons of help from family, Docs, and our Goddog, to bring Jason into this world. Proof enough to me of what bodies can do. I did not die. This body survived. This body was repaired. This body is still recovering, everyday.

I have to say that my mind, on the other hand, plays tricks on me. Big Time. Huge with a capital Ginormous. The default setting of my mind is a very negative place. It talks to me like this, “you can’t. You shouldn’t. You’re not worth it. Not good enough. Don’t try again. It won’t be any better. Why bother? There must be an easier way.” And my favorite, “ya screwed it up, again.” My mind loves to argue, with itself. Getting a consensus and acting with confidence is a skill I practice every day.

You see, I definitely have a committee upstairs in my head. I think they might be a committee of rabid squirrels running fast on those hamster exercise wheels. Most of the time, the squirrels toss out crazy ideas to each other and argue over which one is the best. And their thoughts like to stay in my head so they can torture me exclusively. They know that if they were to come out my mouth, people in my life would encourage work be done on the good ideas and the bad ideas would be shut down super quick. But inside my head, the ideas go round and round. It is exhausting. My mind exhausts me.

My Buddhist Reiki Nancy called them “old tapes,” that play on a loop in our minds. We learn them when we are young and so often believe we are incapable of changing the tapes. We believe, Nancy taught me, that we are that old, unchanging, static story. We hate this reality. We suffer, but don’t know that we can or how to change the tape. The stories are familiar and therefore we take comfort in them, at least I do. But they are not healthy for me. I have to press STOP on that machine. I have to practice the habits of mind that helped me get and keep a healthy body. I have to listen to the trusted experts, loved ones and Goddog in my life. I have to do what they say. I have to open my mouth and let the squirrel lies come out. And I have to do this every single day. I have to practice. I have proven to myself time and again the power within my body. I am a survivor. I am here for some purpose, and each day I am given is an opportunity. I know how to help my body and how to hurt it. I have also proven to myself, ad nauseam, the power of my mind. I have battled mercilessly with myself, and can still do it today. I have been my own worst nightmare and then my own best friend, tender and true. I have proven what works for my body and my mind. I do seem to survive in almost all conditions, but today I choose to thrive.


June 22nd 2003

It has been a long week. Coumadin dose is alternating for the week between 12.5 and 10mg. Those are both pretty high doses. I guess they are worried that my blood will run slow and get stuck in the narrowed bits and then what will happen. We know what will happen. I know what will happen. It’s just a question of when. I am exhausted all the time worrying and checking. Everyday I take a nap in the afternoon. I fall asleep fast and it is weird right now. I sleep really good during the nap. I can’t do it at night so well. But during the day, I sleep and my mind shuts off a bit. I actually stop thinking of the next stroke for a while. But then I wake up.

I started the week feeling a bit off. I had been good over the weekend and not bothered anyone with my cuckoo thoughts. My pupils look ok, but I can’t stop checking them in the mirror. Early Monday I went over to my doctor, didn’t call first, just to make sure everything was ok. They said I was fine. I have to believe them. And I do believe, until I leave the office.

My doctors want a fasting bloodwork done at my hospital to check various things. It is hard to wrap my head around the fact that on the 20th of June, I was 11 weeks out from the stroke. I had survived 77 days without another stroke, recovered my swallow, and bore absolutely no resemblance to the Rachel before April 3rd. It’s like two totally different people share the same body. And no matter how many Doctors tell me that that this is all happening to me, and that I am getting better, I don’t believe. I watch this strokey freak and am confident it is not me. I don’t want it to be me. I will wake up soon from this nightmare and everything will be just like it was.

But I do what I am told by my doctors. It is my job right now to do what they say. What else could I do right now? It seems all I can do. And I don’t mind fasting for the blood test, because I am not really into eating anymore. The nurses who draw my blood are impressed. I present them with both arms and they easily find a good vein. I don’t squirm or blink or whimper. The needle is big, but not the biggest I’ve seen. They need about ten vials of blood, so it takes a while to change between vials. But I don’t flinch. They take out the needle and put pressure on my arm with a cotton pad while the blood clots. They have to change the pad twice. My blood is running fast. I don’t make a sound. They are out of the paper tape and have to use the harsh plastic tape to secure the final cotton pad. I know it will hurt to pull it off later. My skin is pretty thin and old. It will rip off a bit, like Gramma Harriet’s used to do after her appointments. I remember. They know it will hurt me and say they are sorry. They are drawing from my right arm where I barely feel the needle, and I joke about it. But when I take that tape off later, I will not be joking. The skin will rip. It will hurt. But I will not cry. Lola will be there. I am a pro at the blood work. I know it.

I took care of that test at my hospital and headed to Mom’s. I go there two times a day this week. She is on vacation at Star Island. It is a wonderful place in the Isle of Shoals off the coast of Portsmouth, New Hampshire. She took me there as my present for graduating from Clark University nine years ago. I jumped off the dock and swam in the deep, salty cold harbor. I remember the rocks and the waves. I think there is only one tree on the whole island. You would think it would be bleak and just grey all over, but somehow the ocean and sun and rocks take on countless colors and textures. I remember that. She goes to the Art’s Conference. I can remember vividly what a special place and time it is on the island. I did the dance and movement workshop which was being led by my aunt. What a gift. I actually felt graceful that week. So I encouraged my mom to go this year. She needed to get away. I know that the stroke stressed her out. I know she worries about me a lot. I told her to keep going and take care of herself. I am right here in Worcester, near my hospital. That is where I need to be. She went to where she needed to be. But her cat needs to be taken care of, fed and loved. The plants need to be watered, and the little garden with herbs and marigolds too. The mail needs to be collected and sorted. I can do that.

I go over in the morning and in the afternoons. It is always so quiet there and I don’t do well with quiet anymore. My body is silent enough with the dead and broken parts. Silence in me is one thing and I can’t fix that. But silence around me is terrifying. I like to hear people, like at my hospital bustling around, or on the radio or the TV, that are always on at my home. It makes me feel less alone and scared. It drowns out the quiet inside, if that makes sense. So I don’t stay long at her place, but I show up and do my job. Some days I bring Lola for the afternoon visit. Her company in the car is really comforting.

Everyone seems to be on vacation this week. School is out now. The roads in Worcester have little summer traffic. Everyone goes away on vacation. I only see Carole once this week. But my swallow is getting better. We are both committed to getting my swallow back 100%. Carole says that is our goal and we will succeed together. I have PT twice this week. We are working on loosening the jaw still. I think the tightness in my jaw and pain is discouraging me from eating much. The TMJ is loosening a bit on one side. It is so great that it is a bit better. However, it does make me realize how bad the other side is when one side stops aching so much. Oh well. I don’t really care about that. But I want to be able to work on my swallow with Carole, so I have to work on the jaw.

We also do some work on my lower body strength and balance. I do standing balance activities. She has me get on the teeter board and I am doing better on that. It has a rounded, half ball type bottom and then the flat board on top. I can rock back and forth on it pretty good. I kind of like it. She is adding a ball to my hands while I rock. I am supposed to pass the ball around my body over and over, while I rock. I have to work on that one. But I am stronger. I can feel it during the PT. (But when I get home, I lose that strength. I feel weak. I think the hospital is a source of strength and the farther away I get, the weaker I get. I need to stick close.) Whenever I get in a zone of exercise at my hospital, I tip my head back without thinking and then I forget to breath. I forget everything except the artery in the back of my neck that I just hurt in that stupid motion I just made.   I put my head back right and wait for any sign of dizziness or pupils messed up. I totally focus on telling the artery to be okay. It takes a few minutes, and I miss out on some of my work out time. They tell me that I am fine. They tell me it wouldn’t cause any harm. But I have to make sure I am ok before I go home. I shouldn’t leave my hospital if I hurt myself and this is where I need to be.

My college sister/friend and her daughter come to visit one afternoon. It is very nice of them to come to see me. We take Lola for a short walk and have some iced coffee. They went on a vacation to Colorado last month and she shows me pictures. The mountains look incredible. I think my weird face scares her daughter. It looks pretty distorted on the left side now. I drool a bit when I get talking too much and I slur too. Gross. My friend is so dear, so totally ignores my grossness. She just averts her head and takes care of her daughter. I feel self conscious in front of her, but worse when they leave and I am alone and quiet again. They stay for an hour and then have to get going back to their home and their busy life. And I have to head over to Mom’s to take care of her place anyway. It gives my house a chance to stop missing people in it. It has to clear out so I can be alone again without it hurting so much. Gramma Harriet taught me this trick. And it works, sort of. Whenever we visited her, on the last day when we would leave, she would leave the house with us. She would go to the bank or CVS or the Post OFFICE. I always found that a curious time to leave the house. After several years of wondering, I asked Gramma Harriet why she did this. She told me that she was not lonely living alone. She had a full live and a warm home. But when we left, the house felt sad and she did feel lonely. Leaving the house for an hour or so, letting it air out and coming back home after a bit, made the house feel happy to see her again. Things were back to normal again and she felt better. Great idea.

My uncle’s birthday was this week. I had it written into my daily planner. (Every year, on New Year’s Eve, I switch over the calendars with all the important dates. Birthdays are always the first thing to write in.) When I checked my calendar to see when I was at my hospital this week, there his birthday was. And I was tempted to go out to Wessyfoo, for a second. I haven’t seen my family in a while. They have been busy with work and the house and all the cats (I think they are up to 13 right now) and my grandmother has been sick. And it is so far to come just to sit in my apartment. I am not sure how long since I have seen them. And it is so beautiful in Wessyfoo in June. The field of buttercups and forget-me-knots give way to peonies, day lilies, and roses near the gazebo. And the pool must be starting to warm up a bit, now that it is really summer. There is sure to be yummy foods to eat. There always are.

But the thought was fleeting. It was a foolish thought, not practical or real for me. I can’t go to Wessyfoo. I can’t drive that far. I can’t be that far away from my hospital. I shouldn’t leave Worcester County. It is not safe. I should have sent a card early in the week, but I didn’t. I called and wished my uncle a happy birthday on the day. That was ok, I guess.

I keep getting letters and bills in the mail, everyday from the insurance company. And I keep writing checks and checking on my grievance. I did get one good letter. It said I was approved for more physical therapy. That is a good thing. The time I spend at my hospital is the safest. Another good letter, I guess, was the approval for another MRI. It is good that my neurologist from heaven keeps a close eye on me. But I am terrified. The letter says that the MRI will NOT be done at my hospital, like before. It is at a clinic across the city, near where mom lives. I have never been there before. No one from my hospital works there. They don’t know me at this new clinic. I don’t like this. But I have to go. My Doctors told me to go. The appointment is for 10 am, but I have to be there 15 minutes early to check in. I find the place ok. I park with no trouble. Inside the clinic, the doors are very heavy and none of them are automated or go around in a circle, like the doors at my hospital. It’s a little thing I guess. I wonder what somebody with less strength than me does. I bet others that have strokes have to come here with somebody when they need MRI’s.   They can’t drive and might be in a wheelchair. Somebody has to bring them and open the door for them. Maybe they come in an ambulance from a “home.” I know most of the people at the “home,” I was at would have to come like that. I know I am lucky. I should feel happy.

In the waiting room, I head for the desk. The face at the window smiles, but doesn’t know me. I know I don’t look good these days. My hair is just brushed and maybe in a pony tail. I am too tired and nervous about putting much make up on. Oh well. I sign in and I see her staring at how slowly I am writing down my information on the 3 forms. My writing is so slow and my hand gets so tired. I stop after every line and stretch my hand a bit. I hope they can read what I wrote, but I really don’t care. Don’t they have all this information somewhere? I have told it and written it a thousand times in the past 12 weeks. I mean, they have my file. They know why I am here. Why do I have to write this stuff down again? It’s humiliating. Now she is not smiling at me. I bet she feels sorry for me.

In a few minutes she takes me down a long dark hallway. It doesn’t smell clean like my hospital. The hall is not brightly lit like my hospital. And I don’t smell Dunkin Donuts coffee. She tells me to put my things in a locker, checks that I don’t have jewelry on and waits for me outside. I brought a CD of Aretha Franklin with me. At my hospital they pipe in the music right into the tube. It helps, a bit. She tells me that the machine is broken. There is no music. I better leave the CD in the locker. What do I do now? The MRI’s are brutal. My head has to be in the tube. I am lying absolutely flat which I never do because of my swallow. I might aspirate. It might happen. And even though I can swallow now, I don’t like to like that flat. Why push it? It could be bad. I never have to lie flat anywhere else. Why do I have to now? But I do. I hate it. It is harder to swallow and breath when I am that flat. The machine is loud, very loud. It sounds like someone shooting a machine gun, round after round. I know it is not that, but that is the image in my mind. It is not very calming. The test is long. I am in that tube for about 40 minutes. I cant see much. There are mirrors inside the tube angled so I can see outside into the room a bit and into the cubicle where the technician is behind thick glass. But I can’t see very well and sometimes seeing a person so far away makes me more nervous than I can stand. The technician is so far away. I am breathing so fast right now and it is so hard to slow it down. If something went wrong with me and I needed help, she might not even notice. IF she did, I am not sure she could get to me in time. So I just shut my eyes and try to breathe and try not to move. That is bad enough. But now I can have no music!!!!!!!! There is nothing to distract my mind, when I do close my eyes. There is no comfort. I will not be able to slow my breathing down as I get more and more uncomfortable. I will move around too much. What will the machine do if I move? Will I have to redo the test? All this runs through my head as we get ready for the MRI. My body is walking and then sitting down and then lying down. My body is letting the tube go over my head and circle all around me. My head nods at the technician. But inside, I am screaming.

I have to do something to calm myself down or I am sure I will have to retake the freaking test. The teacher light bulb goes off at that moment. I don’t know where the thought is coming from. But out of desperation I am going to go with it.  Make a game. Use the alphabet. Make it easy. Make it hard. Make it all-engrossing so the body is still while the mind is tortured.

A to Z in the MRI

Rules of the game

  1. Pick a category. (BANG BANG BANG BANG BANG)
  2. Start simple, something you know a lot about so you don’t get frustrated. (gotta stay still) (BANG BANG BANG BANG)
  3. FRUITS is the category (BANG BANG BANG BANG slow down your breathing Rachel.)
  4. Now, start with A and name a fruit for every letter til Z. (BANG BANG BANG BANG)
  5. A is for apple, B is for Banana, C is for cantaloupe, D is for…D is for damn it. No, Skip it. Move on. E is for, skip it, F is for Fig, G is for Grapes, H is for honeydew melon (BANG BANG BANG)
  6. When you are at all frustrated, move on. Pick a new category and start from A. (BANG BANG BANG)
  7. FOOD is the category. A is for avocado, B is for beef wellington, C is for cake, D is for donut, E is for eggplant parmesan, F is for food, that counts, move on, G is for gum, that counts, move on, (BANG BANG) H is for honey, I is for icecream, J is for juicy fruit gum, that counts, move on, K is for kumquats. Bored
  8. When Bored, pick a new category.
  9. CITIES is the category.
  10. A is for Auburn, B is for Boston, C is for Cincinnati, D is for Denver, E is for East Boston, it counts, F is for….wait a minute. (BANG)
  11. When inspired, pick a new category.
  12. CUSS Words is the new category. A is for A***ole, B is for B**ch, ooh this is good. And I know some swears in other languages, thanks to a few kids I once knew. I don’t even hear the machine anymore. My breathing is calmer.            The test is over now. The machine is open. I am up. I can leave. I can go to MY car, drive MYSELF home and collapse with MY babies. Holy Crap, I am exhausted. And my jaw is locked almost totally shut. Sh**.
  13.      This is good. I am not squirming. My head is full of happy thoughts, like expletives. I can handle this.


June 22nd 2016

The school year is over. I know it is. I was at the last day of school, June 14th. I coordinated the sixth grade promotion ceremony. Mercifully, the weather was cool the last week so the building did not heat up like a sauna. I got the room packed up and cleaned up with the help of G2 and the students. They have been so edgy. They were writing their reflections and we would be picking some to be read at the ceremony. I tell the kids that this is their chance to reflect on this portion of their school career as it comes to a close. I give the same directions for writing that I was given by my mentor teacher the first year I taught sixth grade.


  1. You can write a chronological reflection covering each year from Preschool to grade 6. Or you can write about just 6th grade. Your choice. Remember that two of you will be asked to read your reflection out loud at the ceremony. This is a great opportunity for you. Remember that you are speaking to an audience and write with that in mind.
  2. You need to explain who your teacher was, who your friends were, funny things about those friend or teacher, field trips you went on, awards you got, ACADEMIC things you LEARNED ********, challenges that you faced, special teachers that you worked with, your classroom itself, tests that you took, books that you read, big things that happened at the school. And most important: YOU HAVE TO BE POSITIVE. You cannot write down anything, at all negative about yourself or anyone else. You either find something good to say, or move on. And I will be checking.
  3. If you are a “sandboxer” or “veteran,” meaning your entire school career has happened here, you might want to focus on that legacy.
  4. If you moved around a lot, you might want to share about that.
  5. It is good to write about your successes so far. You have them.
  6. It is good to write about your fears of the future. You have them.
  7. It is necessary that you write about goals that you have for your future. You need them.

This kind of writing gives them a productive way to channel their anxiety at this huge transition time. That is the goal anyway. I was so impressed, if I am honest. So many of my students wrote with such honesty and insight about their lives. They used humor at times, shared grief and struggle, praised teachers and appreciated friends. I, as usual, was self-centered and focused on what I had to Give the students so they could do well on tests and succeed. , I underestimated what they had Taken or what they had to Give to me. As soon as we read them, G2 and I knew that they were the speakers for their ceremony. This year we would not invite a formal adult speaker into the program. The students themselves would share their experiences, struggles and hopes with each other and their families. The students had said it all, and beautifully. So 7 students between the two classes, practiced reading their reflections out loud for the ceremony. I knew they were terrified to do it, on a stage, in front of a crowd. But we just pushed through and practiced with each other, over and over, cheering each other on.

As their teacher, they did include comments about me in their reflections. And they were positive comments. But I was fascinated by their take on me, but what a got from me, how they saw me, what they learned from me. My take-away this year, in their own words:

“I had a baker/stroke survivor teacher named Mrs. Henry and the teacher who knows everything because she’s greek, G2. They always make us good stuff to eat like cake, monkey balls, crack, and brown E’s, literally brown E’s.”

“Every teacher had taught me something either academically or taught me something that affected me emotionally. For example, Mrs. Henry who had a stroke earlier in her life, but survived. And her life threatening experience had encouraged her and her students to help raise awareness about strokes by raising money at school every year with the sixth graders…these stories (that we learn about and hear about at school) were life lessons that you won’t forget which leaves an impact greater than anything you’ve learned in school.”

“These lovely teachers help me focus and helped me think about the future because I thought there was no point! But they showed me that there was and I want to say thanks for always counting on and believing in me…OMG YOU DON’T EVEN KNOW HOW THANKFUL I AM.”

“Last but not least, I want to say thank you to Mrs. Henry, because she taught me the values of sixth grade. She is very driven, with passion and determined. She believes ‘children are the cure for everything.’ I couldn’t agree more. You realize after a big change happens to you, you look at the world in a positive way….this year may not have been the best year, but as Mrs. Henry says, ‘Fake it til you make it.’ “

The first student is a creative, funny bright young man who can be his own worst enemy, and certainly drive this teacher cuckoo when he wanted to.

The second student was easily our valedictorian, but also a phenomenal artist and foodie too. She didn’t want to read this out loud, at all. But she did.

The third student is a spectacular sweet and beautiful and graceful and spirited soul. But that is not what she sees. My wish for her is to for her to know her gifts. That reminds me of the song we always sang for graduation at my old school. It is a tough song to sing, but even I got into it. I couldn’t help it. I had to. I had to be a part of this singing with my students. I love it and them. But I have a hard time letting go of them at the end of the year. And the song sort of helps me say goodbye to them and the school year. I can try to make room for my summer; a trick I learned from Gramma Harriet works again. https://www.bing.com/search?q=my+wish+by+rascal+flatts&form=EDGHPC&qs=LS&cvid=a013bd208efb48e79a449c112978b6ab&pq=my%20wish%20by My wish is this, for her.

The last student…is a force. She reminds me a lot of me. And because of that and the trials she had to face in her life, the year was never dull with her. Such a bright young lady who always had great thoughts behind dark eyes. (although she certainly gave us a piece of her mind, most days.) The twinkle in the eyes betrayed mischievous thoughts you were glad she never said and pain you wished you could take away for her.

Food for thought for my summer.

And so I know it is summer. I don’t set my alarm. I don’t pack lunches. I can stay up late. I get to putter. But my head is still with my kids. It has been a week and I am not yet in a summer groove.

The day after school got out, we went to Wessyfoo and played. The mens went and played a few holes of golf to celebrate my uncle’s birthday. Jason and I made a Frozen S’mores Pie: graham crackers and butter mashed up and pounded into a crust. (Jason loved pounding them to pulp.) Then the filling of condensed milk, cream cheese, cocoa and whipped cream. Frozen in the pie crust. We transported the pie in a cooler packed with ice, still in the springform pan. Then at Wessyfoo, after burgers for lunch, my aunt and I excavated the pie from the pan and put it on a platter. We piled marshmallows on top and broiled, yes broiled, the frozen delicacy to toast the marshmallows. Then we devoured said pie. Image-2-for-6.22

In various states of sugar shock we continued to celebrate. My uncle, who works at a golf club, loved the golf balls Jason gave him. They had his shortened name, “Dick” printed on them. We laughed at his thanks for now having a set of two good balls. Boy that sugar makes us say silly things. We went in the pool. Jason quite perfected his cannonball. Image-3-for-6.22

Boy, sugar makes him better at aquatics.                                                        My aunt showed me the foxgloves, grown freakishly tall in that yard. The sugar makes things grow so tall. A sweet day was had by all.


The city came and gave us the best present. 5 years ago, they had torn up our road for months laying new pipes. It was a loud dusty nuisance for adults, but 2 year old Jason thought it was God’s gift to him. Every day the street bustled with huge diggers and trucks and dust and dirt and backhoes. He loved it. Anyways, some trees were cut down. Ugh and Ick and Weep. The following year many homes in the ‘hood got new trees, but not us. We hadn’t lost any trees out front and we have 14 mature maples and oaks and such around our small property. But I wanted more. I always want more. We had planted our Moonglow Pear tree to give shade and fruit in the front yard. But the city hadn’t given us a tree to help line the street and I was getting a resentment over being snubbed, until this week. Tim came home from a job and announced that the “mens from the nursery” were dropping off a cherry tree for out front. NO WAY! He said they would come right back and plant said tree. NO WAY!

I went to the front porch, looked down, and WAY….there was our tree. And no more than 10 minutes later, the mens were back with big digger. In three scoops, the greedy machine tore up a big hole along our sidewalk verge to plant the tree. I ran down to the mens and began cheering. They said I was the first to cheer about getting a tree. Most folks were not positive or not saying. “People suck,” was my response. I mean we like to breathe, right? So we love trees, right? The mens agreed but said they had to be professional in their work. I told them I was on summer vacation and had no such requirements. Our tree is a Yoshino Cherry Tree. It is not a Japanese cherry as I had thought they all were. It is actually from an island off South Korea. Jason is thrilled because Tae Kwon Do is Korean too.

Over the weekend he tested for his new belt. The testing is the most beautiful display of skill and passion and control and dedication. All families gather and our blue belt with the white stripe is amazing. So he loves that our tree is Korean. I got right to watering “Miss Jordan,” as I named her after one of Jason’s Tae Kwon Do instructors. The mens said that the city would be back, but probably not until next week to put the rubber bag around the trunk that they would fill with water on a regular basis. But our tree doesn’t need that bag. I will make sure she has all she needs to survive and thrive.


Jason and I went and picked strawberries at Tougas Farms Thursday. http://www.tougasfamilyfarm.com/ It’s a nice ride out north east of Worcester. We try to go every year, but recently we have missed the season because we were in school so late. This year, we were out for prime picking.   We got up early to be the first on the fields. I didn’t want to pick too much, just enough for a strawberry shortcake,


some strawberry bread and a big bag to freeze. We picked, or rather I picked and Jason held the bucket, about 5 pounds of glorious berries. Then we headed to check out the playground. Jason gets bigger each year and can climb higher on the ropes and rocks.



They have goats to visit and this year added an alpaca. But that is not all. We head into the snack shop. Jason gets a strawberry smoothie, off the hook with fresh berries and strawberry ice cream and I get a bag of strawberry donuts. They make fresh donuts with whatever fruit they have, as it is in season. We will come back in a month for the blueberry donuts, and to pick the fruit…of course. Right. We brought the strawberry donuts back to the house and shared with Baba and Tim. Gus wanted one, but I resisted his imploring eyes because it is not good for him to have all that sugar. I made him a hot dog, cooked in butter, instead.

As the weekend came, Mom got ready to head to Star Island. http://starisland.org/ I got ready to go downstairs twice a day to feed and play with her kitty, Amelia. We were all rushing around “doin’ doin’” with our summer preparations. Someone left the gate open. So someone, GUS our Goddog wandering beagle, got out. I had let him out on the deck and gone inside to Baba’s (Jason’s name for his grandmother) to check on Jason’s visit with Mom and her friend who would go to Star Island with her. I sat for a few minutes and then went to get Gus from the yard. He was nowhere to be seen. I walked off the deck and saw the open gate. I felt my heart leap into my throat and my heart start to pound in my chest.

A beagle on the loose, I should have been terrified and in a panic. Beagles follow their noses. He could be anywhere. He could follow his nose into the road and get hit by a car. He is a purebred. Someone could dognap him. All these thoughts I could run with and freak out. And once upon a time, with our Gus, I did. But not anymore. You see, our beagle is a single minded chap. He is a foodie, like his Momma. On our family walks, he is shackled by harness and leash, we pass West Side Barbecue. http://www.allmenus.com/ma/worcester/141585-westside-steak–bbq/menu/ Remember, our beagle is a Southern beagle. He loves ribs n beer n such. But such things do not abound at our house. Every time we pass by the folks eating at tables outside the barbecue place, he stops and refuses to budge. He begs and pleads for a sample. I think he even dreams of the menu. When the wind is just right in the backyard, as we are right behind the restaurant, you can smell barbecue for hours. Gus will lie in the backyard, eyes closed, and tongue lolling with the smells making pictures of ribs dance in his dreams. And so every single time, “someone” leaves the gate open, we haven’t a doubt where our beloved beagle is or hasn’t gotten to yet, but is en route. West Side Barbecue is his destination.

I run inside the house, tell Tim the news and grab the leash for the Goddog. I also grab a couple of tissues for my nose that will clog and run amuck as I walk the beat to find him. I do not focus on or practice good breathing when I am out for my Goddog. I have enough healthy fear to focus only on him. So I clog up fast, can’t breathe much at all and drool a bit too. Lovely. I could pay attention and take care of myself on this mission that I know too well. But I am not that evolved yet. I prefer to suffer a bit and look hideous in the process. But at least I know enough to grab the tissues. I head left down our road on foot. Tim takes the Ford and heads right up the hill to the main road. There he turns right and goes towards the destination. He spies Gus, just approaching a table. Gus almost made it to heaven. Tim gets out and drags him into the car. Gus hates riding in the car so he drools profusely on whatever seat he is on. Today it is my seat. They head for home, stopping by me to let me view the unabashed escapee. They drive the rest of the way and I walk, relaxing a bit and giggling a lot as I go.

Sometimes, we haven’t even realized he was out. I have gotten several phone calls from staff and customers at West Side Barbecue. Gus has sidled up and sat down with them. They read his tag and call me to see if I want to come get him, and to check if he can have a taste of their ribs. These are the adventures of our Gus. And we are so grateful that we can predict where his passion leads him and have such a happy ending, for us anyway, to the tail. And these are the happenings of early summer for our family. Happy and Yummy adventures and traditions that I get to be a part of today.