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.

HAPPY

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!

(I DID SURVIVE A STROKE FOR THIS DAY, with you!)

 

 

 

 

 

 

Leave a Reply

Your email address will not be published. Required fields are marked *