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.



June 12th, 2003 & 2016

June is the month I celebrate my dog.  (Love you Gus!)  And Dog spelled backwards is God.  So June is a month to connect with my goddog and that is always a good thing.

June, Goddog Tawpic for today!  Discuss…


Nancy, my Buddhist Reiki Master angel, taught me “if you really touch the pain, it disappears.”  The pain loses all power.  You stop carrying it with you, every step of the day, and move beyond it. And I believe her.  I believe because I have practiced and it is true, for me. My stroke taught me that I am not here to be miserable or tortured by things that have happened in the past.  I know that I am meant to be happy, every day.  I know that I am here, because I am meant to do something for others. When my goddog thinks I am ready, and strong enough to handle something, then I do.  Opportunities to heal present themselves to me.

I got through my stroke.  I survived.  It was hard and there was a lot of pain.  But I did it.  I was scared every second of every year for years.  But I fought hard and I made it. Before I worked with Nancy, I believed that if I just pushed hard enough for long enough, I would make it through anything, and come out the other side.  And I did.  But the pain came with me to the other side.  Some days it didn’t hurt and I didn’t even know it was there.  But there were always, “things in my past that I didn’t want to talk about.”  There were so many topics that I avoided with the words, “you don’t want to go there.”

But I guess I did want to go there. I wanted to make room for new gifts in my life, but there was no space inside me.  The pain would have to go,  I had no idea how to do that. I didn’t believe it was possible to live without suffering.  And I couldn’t ask anyone for help.  My greatest teacher and gift, my stroke of luck, taught me that I don’t have to live with pain everyday.  But I can’t do it alone.  I can only be rid of the pain, when I am truly ready to feel it and let it go.

My Goddog tells me when I am ready. I rely on a higher power to direct me on these things.  I kind of listen for the word from Gus, so to speak. Good friends and my husband let me know too.   It is so great not think that I can or should do this all by myself.  I mean, I got through my stroke. Yes.  But I didn’t get through the pain then.  I was consumed by the pain and fueled by it.  The same is true for fear.  I was so busy surviving, there was no room for healing.  I held on to the fear and pain because I had to to, they were keeping me alive.

My life now is greater than that.  I have room for love because I have truly touched a lot of the pain.  With Nancy I learned how to feel some of the pain from my stroke and then release it.   I have worked on other pains too, when the time was right and I was ready.

I want to be happy and healthy.  When I am given the nudge to do some work,   I have to cooperate. The pain is blocking me from good things in life. And I did NOT survive my stroke to wallow in pain.  Pain, for me, has to be fed and tended too.  I have to give energy to this beast to keep it going.  When I realize that the PAIN beast is stopping me from being free in my life, it gots to go!!!  I cooperate with the goddog by stopping feeding the pain. I can do that.  And then I have to be open to really touching the pain.  Nancy taught me, and I mean, REALLY touching the pain.  That is my part.  It is not easy and it is a definite “Ouchie.” But when I really do it…POOF, it’s gone.  The relief is immense. Love does flood in and heals.  Thank you Goddog for giving me the loving nudge.


June 12th 2003

Coumadin levels are alternating between 12.5mg and 10mg per day.  I have a swallow study today at Radiology in my hospital.  They have to give me the test to see how I am doing.  I saw Carole two times this week and now I have the swallow study and that is it for the week. I am so scared.  I don’t want my progress to slow.  But without the work with my people at my hospital, what will I do?  I try to keep up with the exercises that they give me at home.  But I don’t know if I am doing it great and I don’t know what else I could do.  I am no expert.  And I really don’t like being alone so much.  I kind of like all the noise and smiles at my hospital.  I have always disliked cheerleaders, but I feel like everyone at my hospital is my cheerleader.  And I hate to admit it, but it helps me do better.

I don’t have physical therapy and I don’t have any more speech sessions this week.  The swallow study will show, Carole assures me that I need to continue with the speech sessions.  I know that and she knows that. I am not sure that they will be approved however by my insurance.  Every day I get more letters asking for more money and offering less approved therapies.  And school wants paperwork and updates too to show how I am doing and to prove that I really am as sick and unable to work as I am.  I was making so much progress.  But now, I am not doing so well.

I worry all the time at home.  That is the bottom line.  I look at my pupils more and more in the mirror and check with the light for reactivity.  I worry about the next stroke. I heard from my doctor that stress is bad for me right now.  So I am trying to be calm.  But I am so scared.  Why can’t I just blink and have it be April 2nd and I can not be scared, for just one more day.

My landlord just sold my house to the young couple upstairs.  What will happen to me?  Where will I go?  I am not strong enough to move? Does the school system understand how big of a stroke I had?  How do I show them how much I have improved, how hard I am working, and that I still am nowhere near ready to work, but still want to keep my job?

Zoe is barfing so much.  Nothing works.  I know I have to let her go soon.  But when?  I don’t want to?  I am not sleeping well at all this week.  But I am trying.  I lie quietly in bed with the babies.  I have some warm milk before bed.  I bundle up and watch funny old sitcoms.  I lie there.  I lie there.  I lie there.  I try to rest so I can heal.  And I am so tired every afternoon. When I take Lola out for a walk and I come back upstairs, I have to stop on the landing halfway up and breathe for a minute.  I can’t even get up the stairs all at once.  In the morning I can. But as the day goes on, I get worse.  Lola even sits down and waits for me, with me. I hate it.  I hate me.   Even without my speech or physical therapy session to tire me out, I am so tired.  Why am I so tired?  Am I getting worse?  What can I do to feel better? Why can’t I fall asleep and just wake up and be all better? Why can’t anyone just fix me? No one gets what I go through. Why do I have to go through this?  What did I do to deserve this stroke? Why did I have to have a stroke? Why me?


June 12th 2016

I didn’t sleep very good, again.  The last day of school is June 14th and I know it is weighing on my mind.  I am doing what needs to be done, listwise to be ready for the end of the year.  But my kids are under my skin, in my heart and always on my mind, right now.  I know I have to let them go.  But it is hard and it hurts.  In August I meet my class and over days and weeks, they burrow their way into me.  I think about them and care about them and do for them and with them for 9 months. We are a team. And I am a strong adult that they can count on.  I got it.  I’m good.  I got the grey hairs to prove it.  All throughout the year, they are with me.  And I am proud to be strong for them.  But at the end of the school year, they leave. Just like that. My heart hurts. THIS Mother Hen gets wack-a-doodle every year when the empty nest is imminent. I know I have to let them go and make room for a summer where I get to focus on Jason and Tim. Once I am in the summer, I am good.  But this June thing, before school is over, is tough.

So I didn’t sleep well.  Rondo was trying to climb the blinds at dawn, which is 4:45am these days.  So after a bit of toss n’ turn, I got up.  I pounded the 3 mugs of water and took my vitamins and morning pills.  I turned on the coffee and jumped in the shower, well I didn’t really jump, but you get my drift.  There is a window in our shower.  And at this time of year, it is warm enough to leave the window open a bit.  I love looking out at sun and hearing the birds during the shower.  A cool gust comes in and hits me on one side while the hot water comes down from above.  I love it. Showering first thing today was a good idea.

The first cup of coffee was heaven, as always.  Never disappoints.  I dried my hair. And still no one, man, boy or beast was awake except me.  The on-going quiet was bringing my June-schoolish-antsiness back a bit.

I was also getting a bit freaky thinking about writing today.  Writing this blog is such a gift, but there are some parts of my story that I haven’t touched yet.  They are raw and the pain is right there. As I look through my big binder from that year and my day planner, the feelings come.  They don’t come back, they come.  I didn’t really feel the feelings then.  I got through.  I didn’t feel.  I couldn’t.  I wasn’t strong enough.  Now I can, but it hurts.

I have the binder in the study with the computer and, near my vanity.  It was Gramma Harriet’s vanity that was in my bedroom at her house down the Cape.  She had no use for a vanity.  But it was pretty and displayed things nicely.  In my house full of men, I got out the vanity a few years ago, for some girly power.  I put my makeup in it and every morning, I sit in front of it, and put on something to take the shine and pastiness off my face.  Today, after powdering, I turned and looked at my Stroke Stuff and thought of the dark dark days of June 2003.  The papers, notes, bills, and cards from then are so sad.  I kept everything in that binder.  I documented all.  And looking at it all, I hurt.  I cry.  My throat aches with burning tears and tightness at what happened then.  Let’s be real Rachel, YOU HURT BECAUSE THAT WAS YOU. AND IT WAS A VERY HARD TIME. You are not there now, but you are feeling it all now.  And you hurt. I know I want to write about this part of my journey.  I know I am ready.  But it hurts and it is hard and I am already in that June-School cuckoo time.  Emotions are running high and I guess I kind of want to run too.

But I am not running.  So what will help me this morning in this quiet weekend house. Baking might help. Baking always helps. I thought of the week ahead.  We don’t have any muffins left for breakfast this week.  And muffins for breakfast today would be good and it looked like all would sleep til the muffins were ready.  Gramma Harriet’s Bran Muffins were the comfort calling to me.  I didn’t have any bran cereal like the original recipe called for.  But I had an unopened box of Trader Joe’s Mango O’s, toasted oat cereal with mango puree and pieces.  The store is having a summer Mango Frenzy. I think I have bought about half of the hundred new products they have with mangoes in them.  All are yummy.  And today I would go to try to load up on the rest of the new products and try them out.  So I made a double batch of

My Bran Muffins, as Gramma Harriet called them

Mango Coconut Muffins, I call em today

  1. Preheat the oven to 385 degrees.

Ahhhhhhhhhhhhhhh, I can take a deep breathe with the sound of the oven igniting.

  1. In a big bowl, put one cup of wheat germ and 2 cups of Mango O’s.  Add 3 cups of milk and let it sit to soften the cereal a bit.
  2. Melt/liquefy 2/3 cup coconut oil in the microwave.  Mix in 2 eggs and whisk a bit.
  3. Add oil and egg to the milk and cereal mixture.  Mix.
  4. Add 4 cups of spelt flour. (Spelt is the ancient grain that hasn’t been messed with.  Good stuff.) Add 2 TBSP’s baking powder and 1 cup of sugar.  Mix well.
  5. Spray 18 muffin holders with coconut spray.  Fill with the batter.
  6. Bake for 20-25 minutes.


The smell of the baking muffins made me relax and smile a bit as I washed up the dishes.  The mens got up, ate the muffins and the day moved on a bit sweeter than it started.

We would go to Trader Joe’s like usual and maybe I would wait and write on Wednesday after school got out.  Maybe today would be about other things.  That would be alright.  We would see.  Jason and I called the Cuzzin in the car on the way to the store.  We call every Sunday and here her news.  She is going to go kayaking today.  That is great.  We have two kayaks here at the house. This summer, we need to take them out. Jason remembered to bring his joke book in the car and so he could tell Cuzzin some good ones this week. We got to the store long before we were done chatting.  The sunroof was open on our parked car.  Jason read a few jokes and stood sticking out the sunroof for a bit while the Cuzzin and I chatted some more.  With the sun rising higher and bellies starting to get hungry again, we said Goodbye to the Cuzzin and headed into Trader Joe’s.  Sure enough, they had more droolworthy Mango products that I just HAD to try.  I HAD to try the licorice type Mango bites, yum.  I HAD to get stuff for my cauliflower, tastes like potato, salad that I would make today.  I HAD to get treats for Wednesday in Wessyfoo after school gets out.  And I HAD to get hotdogs for Gus’s birthday on Tuesday.

At the checkout register, I got busy bagging all our goodies.  I love looking at the food again and seeing what I really get to bring home and eat.  Yum.  Jason was sitting on the window ledge with the cheese curls he picked out for the ride home.  He always picks out a snack to eat at school and one to eat in the car ride home.  I was busy bagging and chatting with the man working the register.  He remarked on my t-shirt.  I guess I had my stroke on my mind today and I was working with it when I got dressed today.  I put on my FAST t-shirt that Tim designed and had made for the Heart Walk.  (Maybe it would help me touch some of that pain that was coming up these days. Maybe, I thought) It has the logo I designed on the front: “spot a STROKE, F.A.S.T.”

The man said he didn’t hear what I had just said because he was focused on my shirt.  He had a childhood friend that he was so close to. (I stopped packing the food.)  He said that his friend had a bad cut on his leg and when it was healing, a clot broke loose in his leg and traveled to his brain.  His friend had a big stroke.  He was paralyzed on the bottom half of his body.  He remained paralyzed until he died. He died young, too young. (I put down the food back onto the counter.)  He said his friend would have been in his early 30’s when he had the stroke.  I listened as he told me how hard it was when he would go home to visit his friend.  His friend was funny and told jokes and still had a sense of humor.  He said his friend couldn’t speak but he had an adaptive thing that would write down or speak for him. (I choked back tears in my throat at how lucky I was today.  I burned with how brutal strokes are.) Stories about fishing, his friend wrote them after his stroke.  They had done a lot of fishing together in their childhood.  The stories written were funny. He would go to visit his friend a lot at first, but less as time went on.  It was hard.  But the stories were still online and he still read them. He stopped scanning my goodies and let the words come out.  This man’s eyes were sad and smiling as he told me his friend’s story. (I listened.  I was witness to his story.  He could tell me and he knew I understood.  I could bear it.  I got to hear this man’s story of stroke and knew I was exactly where I was supposed to be.  A real moment of healing was happening for him and for me. I had sort of created it.  I was definitely grateful for it. This was what I was meant to do today.  I looked at my eyes in the rear view mirror on the way home.  My eyes were not sad anymore and my smile was getting bigger.)



June 7th 2003 & 2016

Today’s Tawpic for Coffee Tawk:

Image _1 for 6_7  The legacy of Muhammad Ali is vast.  We could tawk every day about his wonderful one-liners, philosophy of life, professional and athletic greatness, political activism and spiritual lessons.

Since I have to narrow the field, just for today I pick this one-liner and a song inspired by him. There’s a powerful message in the one-liner. I wonder if the meaning changed for Ali at different times in his life.  It certainly has for me, reflecting on his words. Before my stroke, I would have told you about the list of goals that I made when I was 14 years old.  I had a master plan, written in stone. I would graduate college at age 21, be married at 22, have a master’s at 23, be a lawyer too, own a beach house and a country house by 25, have 2.5 children by age 26, and get my first Oscar or Emmy by age 30.  That was the plan.  Those goals were a source of focus.  But when I wasn’t married at age 22, what then? I extended the deadline to 30 to keep sticking to the same goals.

My stroke hit at age 30 and blew that plan to smithereens.  A stroke was definitely NOT in that plan.  And then I had goals born of crisis: I will survive the nights in the ICU, I will get out of the “home,” I will swallow, I will go home, and I will drive my car.  And I kept going with passion and GRIT to accomplish those goals.  I got very, very lucky. But what happened when I DID indeed do all those things, what then?  Crossing things off of some ancient list or beating the medical odds were powerful motivators.

When I came out of physical crisis, I didn’t fit anywhere on the list of goals from my childhood.  It’s like I hadn’t written that list, someone else had.  I was different.  I needed new goals.  But I didn’t know how to do that.  I didn’t know I could.  I was lost.

Goals certainly keep me going now.  But they are not my goals coming out of my crazy brain, made in isolation and written in stone.  My main goal today is to be the healthiest Rachel I can be.  As long as I do that, it is a good day. The ways of accomplishing that goal change, a lot, often.  I surround myself with wise people who tell me what is healthy for me.  I have to listen.  I have a voice within me that dreams big.  It yearns to do the most creative (and lunatic) things.  I have to make room for them.  I am connected to a powerful source of energy, flowing all around me.  I have to feed it.

I don’t make many goals today, but I have a lot of them.  I work on that one first goal about being healthy today. (I think I learned that one the hard way.) The rest of the goals seem to come to from a source. When I run my life, it runs aground.  When I listen to the little voice inside, or big voice outside, when I cooperate with what the day gives me, I believe that is what I am meant to do.  My job is to the greatest work I can with what the day brings.  It truly is that simple for me now. It is not complicated.  (I don’t do well with complicated now.)   Each day is a gift. I need to remember that. Every day is loaded with ways to help others, be of service, create something, and watch something grow.  I mean, look at my life since, and I believe because of my stroke.

I am having a hard time being clear right now. Sometimes I get so passionate about something that when I try to explain it, I end up babbling.  So I am going to bring in my second Ali inspired thing for today to help.  We all know his line, “I am the Greatest!”  It inspired a song.  I play this song to my students every year.  After we hear the song and read and reread the words, we have a dialogue about the ideas it evokes.  The conversation is called a Socratic Seminar.  It is a way of getting kids to dig deep, think hard, and create great understanding of hard text, by talking together.  The great understanding does NOT come from one mind.  It is built together through the sharing and listening and expanding on the ideas of many.  Text is tough to understand for many.  And in 6th grade it might not seem like a cool goal to reach for.  But this song is cool.

Every year, I watch the kids as they read the lyrics and hear the words.  What do they think is the greatest thing on earth?  What are their goals for their lives?  Do they even know how to dream? What matters to these kids?  What will ignite their passion to do the greatest things possible? Do they see how great they are? Do they know they are the world’s greatest, in my eyes?

The World’s Greatest

By R. Kelly

I am a mountain, I am a tall tree, oh I am a swift wind Sweeping the country

I am a river, Down in the valley, oh I am a vision And I can see clearly

If anybody asks you who I am, just stand up tall, look ’em in the face and say

I’m that star up in the sky I’m that mountain peak up high Hey I made it, hmm I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it, hmm I’m the worlds greatest

I am a giant I am an Eagle oh I am a lion Down in the jungle I am a marching band I am the people oh I am a helping hand I am a hero

If anybody asks you who I am, just stand up tall look ’em in the face and say

I’m that star up in the sky I’m that mountain peak up high Hey I made it, hmm I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it, hmm I’m the worlds greatest

In the ring of life, I’ll reign in love (I will reign) And the world will notice a king (oh, yeah) When all is darkness, I’ll shine a light (shine a light) And the mirrors of sucesss reflect in me (Me)

I’m that star up in the sky I’m that mountain peak up high Hey I made it I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it I’m the worlds greatest

I’m that star up in the sky I’m that mountain peak up high Hey I made it I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it I’m the worlds greatest

I’m that star up in the sky I’m that mountain peak up high Hey I made it I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it I’m the worlds greatest

(He’s the greatest) Can you feel it? (Can you feel it?)He’s the greatest (He’s the greatest)Can you feel it? (Can you feel it?)I saw the light (He’s the greatest)At the end of the tunnel (Can you feel it?)Believe in a pot of gold (He’s the greatest)At the end of a rainbow

Songwriters: ROBERT S. KELLY



I guess that goals keep me going forward, to be the greatest I can be, today.  What about you?


June 7th 2003,

This week I am alternating between 12.5 mg and 10mg of Coumadin per day.  The levels are pretty erratic.  My body doesn’t seem to be settling down with what I am eating and drinking, balancing my levels as well as when I was on the cans of formula.  It is hard to know what to do.  I want to eat bananas.  They are simple and sweet and smooth to swallow.  But I can’t eat them, too much potassium.  So I don’t even buy them.  But I am fixated on them.  That is what I want to eat.  The rest of food, I don’t really care about.  My jaw is so messed up and chewing is a real pain.  It’s so weird to not care about food.  Oh well. Cans are easier.  And I am tired.

I am swallowing the cans fine and that is good enough for me.  I still have enough cans left for a couple of weeks.  I guess they really didn’t think I’d get my swallow back this soon, if at all.  I had Carole four times this week.  We did good work with the DPNS and she has given me a lot of exercises to help with the facial muscles that are so tense and painful.   I like the morning appointments that I have booked.  I have to get up early, like I did when I was at school every day.  My face is more relaxed in the morning and I think I get the best out of the folks at my hospital in the morning.  I am the first patient and I like that. They have coordinated two PT appointments with Kelly this week for me.  I can’t believe that I have seen her 6 times already.  We work a bit on the balance and my gait and my strength.  But she has really focused on the TMJ garbage in my jaw with massage and stretches and stuff.   She knows what she is doing.  I have an hour with Carole each time and only 30 minutes with Kelly. But for my 30 minute sessions with her, it’s like my body really wants to cooperate.  I mean it really relaxes and then tries to practice what she is teaching me.  For a minute I feel pretty normal.  I try to keep it up the rest of the day, but by noon I forget to be good.

I am learning a lot about insurance lately.  I got some help with my grievance about speech therapy.  I found out that someone can be my representative.  A great guy here at my hospital, who knows the system better, will communicate with the insurance company on my behalf.  I got a “Personal Representative Authorization Form.”  We both filled it out and now he can help.  I guess it pays to come early to my appointments and chat with the folks that work here.  Now he will fight on my behalf.  I am so tired.  I haven’t got much fight in me right now.  What’s the point?  I have been fighting so hard for me and I can fight so much harder than any other stroke person I have heard about.  I know I should feel lucky.  But I don’t.  What am I fighting for?

Kelly has to re-evaluate me after the 6th visit.  She has to spend our time writing notes and filling out paperwork.  I have achieved some goals in our sessions.  But not all, and I really hope they approve more sessions.  I have more sessions allotted by my insurance, but they have to be warranted in the eyes of the company.   It is only 30 minutes of their time and money. I have had only 3 hours total of Physical Therapy, just 3 hours. That math is inconceivable to me.    And yet there is so much paperwork and authorization that has to be done to get that 180 minutes for this one patient.  I really get a lot out of my work with Kelly.  In that 3 hours I have gotten stronger.  We set goals together for me, and I am reaching those goals.  It feels so good to succeed. I feel almost comfortable in my body when I am working with her, almost human.

But the visits are so few and so short and so much work to make happen.  Each day it’s like I get less and less help now.  But I am not getting more and more better every day.  I get better and I feel better when I am working with them on a goal, here at my hospital, safe. When I come home, I don’t really have a goal other than taking care of my babies. I pay bills and do laundry and this week I got the car inspected too.  I took the babies to the vet last week, Zoe is doing really bad with the barfing.  But she is impossible to medicate.  I thought I was a bad patient.  I am a saint compared to her.  I tell her she will feel better if she takes the medicine.  I feel her it is only for a few days. And then she will be better.  But she claws and fights.  I tried pills and liquids.  I try zipping her inside my duffel bag with only her head sticking out so I can get the medicine inside her.  But she can still bloody me with her teeth and I can’t get the medicine in her. I don’t know what to try next.

I called a few friends from school this week to chat. They are busy with the last push of the school year and getting ready for summer vacation with their families. My college sister/friend and her beautiful baby came for a visit.  This time I got a few snacks in the house for them.  I am going to go to Mom’s to watch the Belmont Stakes this weekend.  And soon she will go on vacation and I will watch her kitty while she is gone.  I do those things, but I get tired so quickly and parts of me hurt, so much.

I can sleep more easily right now with the medication they give me. And sleep is what I want to do.  It passes the time between my appointments more quickly.  And for a few hours, I stop thinking and worrying.  I stop asking questions: why I had to have this stroke? Wasn’t I too young for a stroke? Wasn’t I too healthy for a stroke?  What caused this stroke? Why did I lose my swallow?   What if I had the stroke at home? Wouldn’t I have died?  Why did it happen at my Doc’s office?  Why did she save me?  Why can’t I move my jaw?  Why can’t I eat bread?  Why aren’t I happy to be alive?

And I am so tired of thinking about all this cr#@ and worrying about more strokes and grievances and medicines and money.   I am obviously not teaching this year. School is out soon.  I have more speech and PT for now.  And I can’t go far from my hospital.  It is not safe for me, I think. I need to be near them.  I have another MRI coming up soon.  Everyone I know has their own plans and jobs and families to take care of. Their lives are going forward on one path.  I am not on that path.  When I am asleep I stop thinking about this stuff, and there is no torture.  And when I sleep I stop waiting for answers that never come.


June 7th, 2016

The garden is coming along.  I can’t believe how green everything is.  The bunny has not gotten any of our plants so far and Gus has not gotten the bunny.  All is well.  The clematis has climbed almost 5 feet up its’ pole.  There are tons and tons of buds.  Tim hooked up our rain barrel.  He cut the gutter and the diverter thingy sends the rain off the roof right in.  I checked the barrel this morning and after a good rain over the weekend, it is almost full.  There are tons of small strawberries on the plants in the raised bed.  I planted them last year and only got a few berries.  This year I added food and soil to the bed.  And I have been weeding and watering. I am trying to channel the energy and ways of the strawberry farm that we go picking at every June.  Guess what? It is working.  This year, our plants look a lot more like their plants.  Who knew?

I added a Bee Balm and a Black Eyed Susan to the wild bed in the back. The garden was here when we bought the house with some iris and bleeding heart in it.  I added some from Wessy and local nurseries over the years.  I want them to grow like they do in Wessy, lush and colorful.  But I think there are too many choking type weed/wild flowers in my bed.  So when I put the new plants in this year, I got in there and weeded out a bit.  I stood like my aunt, grabbing weeds with both hands, knees well apart and bum in the air.  I was stable and got tons of weeds in one go.  I did apologize to the plants I pulled up.  I am not sure what the bum up or saying sorry does, but if I want the garden my aunt has, I better do what she does.

I added another row of twine low down on the tee pee for the climbing plants.  They all hit the first level of support.  But there was a big gap to meet the next level.  So I added more twine and sure enough, the beans and peas are already hitting it.  I think there are buds on the beans and spaghetti squash plants too.  Amazing.  It’s working.  I am doing the work, making changes that I thought would help and the garden is much healthier and hopefully productive.

The garden is absolutely healthier today and me…not so much.  A few years ago, I found a stinging nettle or poison ivy/oak in the yard.  By “found it,” I mean that I broke out in blistering bubbling, itching, oozing and festering ick after working on the yard one day.  I had never gotten hit so badly with the rash reaction.  When a blister broke out on my face, I freaked.  I wasn’t suffering well, or quietly, with the itching on the rest of my body either.  But when it hit my face, I hit my doctor.  She put me Prednisone.  She said that the allergy to the plant was in my blood because of all the itching and scratching I had done and that’s why it popped out on my face even when I hadn’t got the plant on my face and it was days later.  She said this heavy dose steroid would do the trick, but said I better wear gloves and long sleeves from now on out.  I took the horse pills and the rash did start to clear up quickly.  I felt bizarre taking the pill, kind of speedy and out of my body a bit.  I didn’t like that feeling. But I didn’t like the rash more, so I took it.

Evidently my body didn’t like the medicine even more than it didn’t like the poison plant.  The day after the medicine was over, I almost went to the ER.  I was breathing so bad, hysterical almost.  My head felt like it was exploding. My whole body was jigging around, almost convulsing.  I was totally sure I was stroking out.  I got so scared. I had not even contemplated the ER in almost a decade.  Stroke was not an option for me now.  I was healthy.  But this was bad.  My body was screaming at me and I couldn’t stop it.

Tim was so calm as I was freaking out that I knew he was out his mind scared too.  So I sent him to Rocky’s on some errand for birdseed, I think.  And I called the Doctor.  It was a Sunday, but the on-call Doc called me back quick.  It was the medicine.  My body went beseek coming off the steroid. And when I felt so beseek with the heart and breathing, I hyperventilated.  Not good.  I just had to calm down and ride it out.  I was ok.  I was not stroking.  The rash was gone.  And I was fine.  My body was exhausted, detoxing from the steroids and needed to rest for a day.  But other than that, I was good.

And every year since, I have been good about wearing gloves and long sleeves when I work in the yard.  But honestly, I have cut back on “the work” out of fear.  I haven’t really done much weeding and tending to the yard, because I was so afraid of reacting to some plant and having to take that medicine.  So the garden grew lush, but not with the beloved beauties or edible yummies.  They were choked out.  This year, I have a new mind set.  It is a family garden and we are doing things differently.  Our goal is to really be able to eat out of our garden.  And we have been working towards that goal. And so I have been weeding diligently and tending too.   And it is working.  And I wore gloves.

I have been careful, but not too careful.  Sometimes, I have worn short sleeves and touched my face and not taken a shower after gardening and not changed all my clothes. And so this year, the blisters came back, on the bottom of my left forearm and on my left knee too.  (Of course it came on my left side, where I can feel it itch.  Of course, naturally.)  Ick! Blech!  And Oh no! I was at school, felt the itch, looked down and there they were.

Oh yes they did.  Something in my loving garden, got me good. But this year, I cannot take the Prednisone.  I did not survive my Stroke to feel that way again.  No sir-ree-bob. Okay Rachel, so what now?  Plan A was to garden in bliss.  Plan B brought garden poison into my body.  Plan C will not include steroids.  What is Plan D?  I went right to the pharmacy and got new Cortisone cream and fresh calamine and took a Benadryl.  With the itch addressed mercifully from Plan D, I set forth on Plan E to try to prevent what might get into my blood stream. And while I am at it, I think about Plan F to try to help my body become less intolerant and more immune to the nasty garden vultures. Tim reminded me to pull out Google and check with this Doctor I follow.

So I did, right away.  I found out that Vitamin C can be increased for treatment and prevention of allergies. Check. I found out that my Fire Cider tonic with the garlic and apple cider vinegar can help with the rash too.  I am constantly amazed at all the things apple cider vinegar can do that is good for me.   Check.  Running my arm under water as hot I can stand for as long as I can stand it, helps too.  Ouch, and check.  I told myself that this would work.  My body is healthy and it will heal.  Check!  And then I told myself again.  I am not where I was then.  I have to really believe that this will work.  I have to visualize myself without the rash, and not on the steroid.  And I have to give it time. Poison ivy takes 10 to 14 days to run its’ course for any human.  Why should I be any different?  I have to live with it, treat it and get over it, just like everybody else.  Check!  Guess what?  It’s been a week. It is working.  I am healing. (I have not been totally comfy.  I know my body is fighting. It is exhausted and run down.  And my mood?  We could call it “moodier than usual,” and leave it at that. I am not sure my family would leave it at that.)  Over time, I have learned a bit and changed some ways and am healing.  And the garden has changed too, less weeds have made space for our flowers and veg to flourish.  It’s all worth it.

The coming summer season has brought the garden and me, health struggles and triumphs. But there has been another challenge for me. This one goes to my Foodie side. In June Madulka’s IceCream, on Lake Quinsigamond, opens for the season.  They opened a couple of years ago and our friend, Lucky, introduced us to their wonderful yumminess and fantastic setting.  They are right on the lake, so you can come by car or boat to get the treats. And while you eat, you can watch the water, boats and waterfowl.  I love it.  They have all the great old fashioned flavors of ice cream and ALL the new and inventive ones too.  Their prices are steep, considering I still remember getting a huge cone at Friendly’s when I was a kid, for way under a buck.  But the size of the scoop is worth it.  They don’t skimp.  They charge a modern fair price, but give an incredible, traditional, seriously good sized scoop of absolutely awesome ice cream.

Anyway, Lucky went there one time and had a banana split.  He said it was so big that he couldn’t finish it.  He is a smaller, leaner gentleman.  But he is also a foodie and I know he can go through a half-gallon of ice cream in two evenings.  He was full of it, I said.  The sundae couldn’t be that big.  He wasn’t serious.  I could do eat it, I said.  No problem, I said.  His Irish eyes twinkled and the challenge was made.  Lucky challenged me to eat one of their Banana Splits all by myself.  It was the end of the season and I was on a diet, so he told me we would wait til the following summer. He told me I would have to “train” for this challenge over the course of the year. Really?  Does he know about my swallow and my appetite?  Does he really underestimate my love of sweets and my sheer stubbornness? Right….I gave a sassy smirk and agreed.  We shook on it.

The next summer, I was on a much more serious diet.  I was suffering as I do, when my weight is too much.  It is my own fault and in the summer, I pay the price with such swelling in my legs I can barely walk.   I didn’t survive my stroke to suffer, so I got serious about taking off the weight.  I had to.  I couldn’t say that everyone gets fat when they get older.  I saw my Dad, who is decidedly not fat anymore.  He is decidedly skinny.  He was nearing 80 years old and had blown my theory.  My competitive nature and the desire to make my Dad proud, kicked in.  I did what he did.  I really went off sugar and carbs. I did lose weight. And I knew it was not time for the challenge.   I did not even try the Banana Split Challenge, and Lucky didn’t ask.

But right after Christmas, when I was well back on the sugar and carbs, Lucky spoke up.  He asked if I was going to finally try to eat the sundae this summer or would I admit defeat? Game on!  Ha!  I had a plan and a mission to wipe that smile right off his face.  I had a goal of meeting that Banana Split first thing when the shop opened.  And I sure wouldn’t need to “train” to do it!

One day in May, Lucky told me that Madulka’s had opened.  He had been there and had a mere Strawberry Sundae.  He likes it.  It is only two scoops and it fills him up to the limit, he says.  Wimp.  I sneered and smiled smugly and we set a date for the showdown.

On the given, holier-than-hot-not-even-truly-summer-but-gonna-sweat-from-places-you-didn’t-know-you-had-day, we met at high noon for the showdown.  I hadn’t trained and I wasn’t worried, until I saw the Banana Split sundae and sat in the sun to eat it.  Then I was worried, and nauseous.


It didn’t really look that big, but the weight of it.  It weighed a ton.  Seriously.  And there was a huge banana.  There were three scoops of ice cream staring at me.  I already forgot what I ordered, it was so hot I was getting ready to puke.  I remember ordering Moosetracks. And maybe I got Milky Way and I think the third scoop might be cookie dough related, but I am not sure.  The scoops are easily the size of a pint of ice cream.  Ok, maybe they aren’t really that big, but the sun is burning my back as I sit here and making objects in front of me appear larger than they really are.  I see strawberry sauce and pineapple sauce on top of the great domes of ice cream.  And I am not really a fruity ice cream gal.  I keep the fruit desserts separate.  When I have ice cream, I go for fudge and mint, whipped cream, cookie dough, chocolate chip, chunk and JIMMY!  But the Challenge includes these fruity things.  Right now, the whole dish is not very appealing.

At home, Jason had said that he would get three scoops of icecream too, to be supportive of me.  I had laughed and said thank you, but no way kid.  He heard me, but didn’t totally abandon his personal mission. At Madulka’s, Jason took advantage of his distracted parents.  He stepped up and ordered a DOUBLE scoop of Cotton Candy Icecream.  Yup, we bought and paid for a seven year old to have two big scoops.  Our foodie son, sat on the shady side of the table with Lucky and ate the lot. Not a problem for him. (I admit I was very proud, and sickened.)

I thought Tim would order a double too.  That was his usual.  But no!  He ordered a single, lonely scoop of ice cream. Maybe he was sick from the heat too.  Nope.  That wasn’t it.  He was leaving room to help me out.  He was thinking of his poor, insane, soon to be very sick, wife.  Awwww.  What a sweet husband I have!  But, he’d be a sweet and very hungry husband soon.  I was determined to push through to victory, whatever the cost.

But as Jason finished his double scoop of cotton candy, and Lucky wrapped up his strawberry Sundae and Tim put his napkin in his napkin in his empty bowl,  I felt my zeal, waver.  And when Tim and Jason got up and threw all their trash away, a voice in my head starting talking to me.  And when I tried to scoot down the bench into shade and could barely move due to the load in my gut, I started listening to that voice and coming up with a new plan.

I could finish.  Yes.  I knew that I could physically lift, insert and swallow all the contents of the bowl.  But I also knew what lay beyond the empty bowl.  Beyond victory over Lucky, was a day and probably a night of ick and sick.  My body would get back at me and the image of a beached whale that can’t make it back out to deep water, but just writhes and moans, helpless on the sand, waiting for death, came to mind.  And what would I win if I finished?  I am highly motivated by rewards and prizes.  If you don’t offer me a prize, I will come up with my own incentive to work towards a goal.  But in this case, if I think about it, there would be no prize, other than being able to say I had won. And the certain physical agony seemed more punishment than prize.

What if I lost? What would be wrong with saying that I couldn’t finish the sundae either?  In the end, I was the same as Lucky, not different. Hmmmm.  That wouldn’t be a bad thing. I wouldn’t be alone in my defeat.  I’d be with a friend. It would be a blow to my ego, to be sure, to have boasted and bragged for 2 years, only to admit defeat.  But I would recover. And I wouldn’t be sick. And I wouldn’t possibly be sending quite an insane message to my son about things to try to be the best at. (Somewhere, in a healthy corner of my mind, I knew that trying to eat this much ice cream just because a friend dared me to, was not a totally educational opportunity or moral parenting victory.)

I was making good strides on the mountain of ice cream.  I had momentum on my side.  I loaded and lifted and shoveled it in.  But as the bites became smaller and the pauses between each grew longer, I thought what if I changed the goal?   What if I made a different ending to the story?  I could be sane and stop when I was full.  That is a healthy message to send.  I could make the goal to share with my husband. I could get a spoon for Tim, so he could enjoy a real amount of ice cream on the hot day too.  I could ask him to help me.  Even though I am asking for help to accomplish a truly cuckoo goal, it is still asking for help.  It is still the hardest thing for me to do.  It would still be good practice for becoming more dependent on those who care about me.  It would be a less defiant act than I tend to make.  It would be a big change in my pattern.  And it would prevent me becoming disgustingly sick by my own hand. Next year, the goal could be to come here on the day it opens.  That would be a different kind of goal. It could work.   All these options were before me.  Image-_3-6_7

I chose the 2nd spoon, the losing and yet winning spoon. Jason got the second spoon.  And before I had reloaded a small bite for myself, Tim had dug in.  Mercifully for me and deliciously for him, we shared and quickly found the bottom of the bowl.


Teamwork paid off. Jason complimented us on a job well done, still claiming that he could have eaten the sundae single handed.  Tim took him by the hand and set off to get the AC blaring in the car before I got in. I swung my legs over the bench, took a breath and stood mostly upright.  Slowly, I waddled to the car with Lucky.  He patted me gently on the shoulder, grinning from ear to ear.







May 31st, 2003 & 2016

Last day of Stroke Awareness Month Tawpic: Image-_1-5_31

I love alliteration!  At this time of year, I can have a hard time with those 3 P’s.  Probably, I am doing well with one of them.  I think “persistent,” is a passing muster trait for me right now.  But the other two…tough to say.  I have come a long way with all three in my life.  But right now, you see there is a lot of pressure to complete an overwhelming number of tasks and assessments at the end of the school year. I live by the academic calendar; August to June.  At 43 years old, my year still follows the patterns of children.  For those not on my schedule, maybe you can relate to how you feel on the day after Christmas?  Maybe.  Emotions run high, excitement for summer vacation can be matched by fear about the coming year in a brand new school and what it will bring.  Absolute exhaustion, at the cellular level even, is the norm for me.   It takes all I have to focus my energy on the “positive.” Negative things can be so alluring, distracting and seemingly easy to handle at this time of year.  “Patience” is a virtue I both lack and pray for countless times each day.  The horns of quick-tempered sarcasm grow quickly on my head.  I joke about filing them down each day so no one can see them and I am less likely to act on them.  But they are there.  It is harder than usual to remain calm in the hot weather with the physical stress, and then compound it with the emotional strife of hot headed friends and students around me.

I find it easy to be “persistent” about things that I want to do, but tough to plug away at the necessary things that HAVE to be done on my list. The garden beckons.  Cups of tea call to me.  Laundry, house cleaning, and report cards are as attractive to me as the plague and so I summon all energy and rational thought to bring those items out of quarantine and put them in the rotation of things “to do.”

I am more likely to find positivity, patience and persistence for the must-do parts of life, if I find a way to make them into a game, or sweet. I mean, I did not survive a Stroke to be miserable.  I have been there and so totally, done that.  This is my mantra.  And practice makes me purrfectly happy.

Over the years, I have accepted the grown up, responsible parts of life with more grace, I hope, and less tantrums, I think.  I am lucky to be healthy and blessed by the work in my life.  I have great opportunities to help others, every day.  And most of the time, I have the 3 P’s in pretty good supply.  But at this time, of this year, stores are low. Today I pick making things sweet, as a sure fire method to practice the 3 P’s more successfully.  I am going to add a P to three listed previous.   I will be positive, about Peanut Butter.  I will be more patient, because of Peanut Butter.  And I will be persistent like the stick-to-the-roof-of-your-mouth nature of Peanut Butter.

The Power of Peanut Butter will see me through today in a much more positive, patient and persistent pattern.  I have a tried and true Peanut Butter Cookie recipe.  And I will add two more types of Peanut Butter products to the batter.  The result, with any luck, will be a cookie that heals all that ails me.  It will endow me with the Super PB Power to enjoy, as I should, the day before me.

The recipe is classic.

  1. Preheat the oven to 375 degrees.  Select two mix-in PB extras.  (The idea of the mix-in comes from a favorite ice cream spot of my childhood.  Steve Herrell’s in Northampton, MA was the original for letting ice cream lovers select from a dynamic assortment of ingredients to be smooshed into their ice cream.  The Herrell’s ice cream employee would gracefully, artfully mix a big scoop of your selected topping into a robust scoop of your fave ice cream, on a marble slab, in front of you.  It was personal, special and magnificent and they did it first!)

Today I pick a bag of chocolate covered, peanut butter filled pretzels.  I pour the contents out and rough chop them for the batter.  My second mix-in is the larger Dark Chocolate Peanut Butter Cup.  All the paper wrappers must be peeled off and then I will rough chop them.  Jason and Tim take 2-6 cups each, in exchange for removal of paper wrappers.  I wait patiently, with the big knife in hand, for them to ready the PB cups.  Image-_2-5_31

(The practice in patience waiting for the mens to prepare the cups has me in better space already.  Or is it the big knife?  No, it is the chocolate, dark and pure and perfect that I smell and taste and share with my beloved ones.  My mood is definitely more positive.  It’s working!)


  1. Cream 1 cup of unsalted butter with 1 cup of smooth peanut butter, 1 cup of white sugar and 1 cup of brown sugar. Beat in 2 eggs. (The smell, sight and texture of the butters and sugars mixed together into one golden cream sends a stabilizing rush of endorphins through my body.  I dip my finger into the mixture.  The taste seals the deal.  The magic is working.  I am storing the POWER of PB into my “good memory department” to call forth tomorrow at school, when my positivity, patience and persistence may be tested.)
  2. Add 2 ½ cups King Arthur Flour, 1 tsp. baking powder, ½ tsp. salt and 1 ½ tsps. Baking soda.  Stir the dry ingredients in well to make a creamy smooth mass.  Add the mix-in extras, and mix to perfection. Image-_3-5_31
  3. (I sample the batter and so does Jason.  He loves to help in the kitchen right now, for some reason.  Don’t question it Rachel.  Just enjoy.)
  4. Scoop a wad, a righteous proud clump of glorious goodness onto a cookie sheet.  (Don’t be shy about the amount.  Don’t be cheap.  Celebrate.  Think Big!)  Roll the sacred stuff in your hands forming a magnificent ball.  Press patiently and persistently on the ball to flatten it a bit.
  5. Bake the not overcrowded sheet of cookies for 12 minutes.  Be positive that as the timer dings, the cookies are perfect. (PB cookies should not be overbaked.  So you don’t want to wait til they look dry.  That is not a good kind of patience.  If they look a teensy bit damp and the timer dinged, if they are getting golden around the edges and the timer dinged, be positive.  They are glorious.  Take them out.  Let them cool. Image-_4-5_31

Now is the time for patience.  Nothing burns your mouth so good as over-hot PB cookies. I don’t know what is in the nature of the PB that it would burn so particularly bad.  But it does.  It singes the palate for a week solid.  What a waste. So, now is the time to practice the patience.  And oh, the reward.  The smell of those cookies and the sight of that dough and the mixed-in bits, is a brilliant reward in itself.

The odors coming from my kitchen right now should be captured.  They should be bottled.  I would wear it for perfume.  I would spray it all over and wear it to school.  The aroma would keep me in positive and patient spirit.  The strength of the aroma would persist with me all day, reminding me to be sweet and enjoy my time. Ooooh, what a perfume product that would be.

Well, perfume aside, and the cookie in front of me, it is time to take my medicine.  Cookie in front of me, becomes cookie inside of me.  I tell you, swallowing really never gets old for me.  13 years later and it still is a thrill.


Problem solved. The Power of Sweet Peanut Butter+ Cookies reminding me how to BE positive, patient, and persistent, just for today.





May 30th 2003

All this week, the Coumadin dose alternates between 10 and 12.5 mg/day. The cold on my right side is still savage.  I tell them that it hurts me when I see the doctors and therapists.  I even called the nurse on Thursday, just to let someone know that it hadn’t gone away.  I was still here with the same frozen side. But so far no one really gets why this is happening. And as it doesn’t seem to impede my basic daily functioning, it doesn’t attract a  lot of attention from them.  They tell me it will pass.  They tell me to call if it doesn’t go away.  But they can’t really do much else. I hear the sympathy and I know they care, but just want to be warm. The long hot showers at night back the pain off for a bit.  Since I don’t sleep much, I might as well try to temper the cold. Ha.  Ciro sits on the sink and Lola  curls up on the bath mat for the duration of each shower.  It feels good that they are near.

The swallow is still working.  But I am not near eating bread or bread products.  It is just not strong enough. I am working hard at Speech 4 times this week. I am working hard at Physical therapy twice this week too.  I am doing the facial stretches, massage and making my face into a big balloon at home every day.  I do some exercises with the 1 pound hand weights to strengthen my arms and work on the gentle lunges and use the exercise ball that I just got to try to get more stability in my core.  (I really want to be able to look normal when I walk, without dragging my foot, tucking my bum under and staring at my feet.  Right now I walk like my grandmothers, except they are faster.) Sometimes the big ball gets away from me and rolls into another room.  Inevitably Zoe is near, and she runs away as if the ball were chasing her.  Silly Zoe Bug.  I really am trying.

But I am not getting better.  I feel it.  In fact, my face has gotten so much worse.  The slack faced look from after the stroke was almost all gone.  Sometimes my face looked almost even in the mirror, almost.   But now total tight, tension jaw has replaced the oozing puddle face look.  The face looks and feels like it is made of steel.  I can hardly open my mouth at all and each day the jaw muscles seem to tighten a bit more.  It is not good.  I know.  The swallow might be improving slowly, but now I can’t get the food in and even chew it properly.  I don’t understand.  I told Carole about this and she modified my exercises.  I told Kelly in PT.  She stopped the core workouts, talked to Carole and now the focus on all my sessions is back on the face.  I don’t even want to eat.  I was getting better with the ball exercises.  I felt a bit more stable today when I took Lola for her walkies.  But they say I have to double up on all the massage and other things that will loosen the jaw so I can chew.  They don’t know why the muscles are tightening so much.  They don’t have any words on why this is happening now.  Strokes seem to have a range of very unpredictable conditions.  And I don’t see that they have any other patients like me to compare too. So, my therapy champions do what they do best. They don’t focus on the questions that have no answers.  They focus on me and finding a solution to the problem.  I stop asking about the jaw. They stop talking so much and work with me and each other to get the jaw to loosen.  That is our focus.

At home, I try to use the same model.  I got a letter from the insurance company today.  They are not authorizing payment for any additional PT.  The letter says that I have exceeded the 20 PT visit limit.  But I check my book and I have only had 6 visits.  So I try to tackle the problem and call the telephone number on the letter. I note the time of my call on the letter to keep track. It is 4pm.  The muzak they play while I am on hold is the same as when I called my doctor’s office yesterday.  When I get a representative on the line, I tell them the authorization number on the letter.  They were wrong.  I haven’t exceeded the 20 visits in PT.  What a relief. I can keep working with Kelly.

They put me on hold again to figure out what the letter was about.  As I listen to the muzak again, I am proud of myself for thinking of a solution and making this phone call.  So many people who have strokes can’t do this.  But I have my wits about me, as my Gramma Harriet would say. And I am not at work.  Getting better is my full time job. So is will patiently wait on hold and see what’s up.

What’s up is not good.  The letter was about Speech.  They are cutting off my visits with Carole.  “Our records indicate that your benefit limit of 20 visits has been exhausted for this calendar year.” They read me the dates of my visits.  I “have the right to file a grievance if you do not agree with this decision.  Normally, a grievance is heard within 30 days of receipt of a request.”  They will send me a letter with the proper wording. I can’t believe what I am hearing.  The lady is so calm while I am so terrified.  I tell her that I don’t think this is right.  I don’t think they can do this to me.  I just had a stroke. What will I do without the therapy?  I ask her to note the problem for her superiors.  While I am waiting for this to occur, I am disconnected. (In more ways than one I guess)

What am I going to do? I blubber a bit, take a breath and  call my beloved Primary Care Doc.  I love that she takes my call right away.  She tells me that she will find out about an extension and take care of what needs to be done for that.  She tells me to keep showing up to the appointments and begin the grievance process.  That is the procedure. I breathe a bit better.  She cares about me. And there is always bureaucracy in any system.  It will work out, but I have to do all this work to get it done.  Fortunately I am able to do the work.  But I am tired.  I was getting better and now this.  Why can’t I just be fixed?

That is a bad line of thinking, I know. There is still time before the end of the day to call Carole.  I stop whining and blubbering and call Carole. Her voice helps.  She tells me that she will have a note ready tomorrow to go into the grievance.  I pick up the note, add the information to the form and file my first grievance.  I try not to worry.  But I read her note.  This is serious.  This is not good. I need the Speech Therapy.  I could die. Image-4A-5_31

It’s all in black and white, “abnormal swallow, increased risk of aspiration, increased chance of hospitalization and possible recurrent stroke.”  All this because I am over a 20 visit limit, an arbitrary number they picked, that means the world to me. I survived the stroke, they took my PEG tube out, and now they could risk all that with refusing to pay for the speech. Why did they save me to begin with?  Why did they cover a million bucks to get my swallow back this much?  Why do all that to get me this far and then cut me off now? How can you make me go through all this and not finish the job?  It would have been much more cost effective to let me go earlier.  I know I am over the edge right now.  I know I am on a rant.  It will not help anything to act all cuckoo.  I know that.  But it’s like I don’t exist anymore, to anyone other than my Doc and Carole.

I try to be good at home about the new exercises. I put the big exercise ball away so I tempted. I think about the new clothes I could go shopping for since I am not putting the weight back on.  I try to make some different kinds of apple sauce.  I am trying to call and make plans to see college sister friend now that she is back from vacation.   I try to focus all my energy onto my jaw and my swallow.  I try not to wonder what is going on inside me.  Why don’t the doctors know what’s wrong?  If the experts don’t know what to do, it can’t be good.  I was getting better.  I swallowed. Why can’t I just keep getting better?  I try not to worry that the bad turn with the jaw means that my whole body is taking a bad turn.  I try not to worry. I try not to worry about the insurance mess.  I try not to worry about bills.  I try not to be scared of setbacks.   But I am starting not to care.



May 29th 2016

The end of May is here.  The month has flown. As May is Stroke Awareness Month, I have tried to pack every day with morsels and tidbits of blue tinted awareness for Stroke to really make a big positive impact about this very-close-to-my-heart (and brain)-issue.  I have accumulated many FAST, blue ways to honor the message of Stroke Awareness throughout the years.  The hunt is always on, and the brain is always plotting new ways to spread the word.  This infographic from the NSA sums up the reason for my obsessive persistence.  Image-_5--5_31

When the month hits, I open with decorating myself and my home in Blue.  This year the Blue level increased! YES!  We have a Central MA Heart Walk team and raise money with our red wagon.  Our team suited up and showed up for a cold, New England spring day walk in new, original design T- shirts!  YES!  The red wagon ran all over school and collected over seven hundred dollars!  YES!

Another annual Stroke Month event is Stroke Lobby Day on Beacon Hill.  I love it that this day to advocate for our state government to adopt and fund for Stroke, happens each May.  It’s like they know it is the month to get the momentum going for my issue: Stroke!   I have been able to suit up and show up to Beacon Hill for many years now. I save a personal day from school and go to Boston.  Some years I fly solo and meet up with my friends from the AHA/ASA at the State House.  Some years Tim comes.  One year, we car pooled and brought another survivor from a neighboring town with us.  This year Tim and Jason are coming with me.  YES!

Each year there are different bills involving stroke being considered.  My job, my privilege is to meet with MY Representative and MY Senator.  I tell them my story as one of their constituents.  I have the easiest job.  I have voted for both of this people.  They are great advocates for Stroke.  They are consistently helping people like me.  I am proud to speak to them and they treat me with such respect.  This is a side to politics that I am previously unfamiliar with.  It is not often that the folks I vote for, get elected and make a real positive difference in my life.  The issues that I care about are not always the ones that get voted the “Right” way, as I see it!  But MY Senator and My Representative make me proud of our democracy.

I have met with the elected officials or their aides.  If the Representative is the Worcester office, or the Senator is in session, then we meet with their aides.  At the advocate’s orientation each year, the importance of the aides is emphasized.  These are the “go to” folks who are “in the know.”  They will carry the message and make sure it is heard, if we do our job well.  To ensure that the message is well received, I add extra insurance.  I do what Gramma Harriet taught me: say “please” and “thank you” with sugar.  Yes, I bake for Beacon Hill.  And there is a method to my madness in May baking choices.

The tag line for The Henry Sugarhouse, baking business is “Seasonal Sweetness.”  In my very unprofessional, but yummy baking, I follow the seasons for inspiration and ingredients.  In summer, strawberries and blueberries and zukes are plentiful, so they are the source of many yummies.  Apples and Pumpkins in are honored in fall, followed by cranberries and dark chocolate in winter.  (Isn’t chocolate really in season all year? I think YES!) Spring demands light flavors and citrus.  I love pairing lime and blueberries for a flavorful tang after the hearty, earthy tones of winter.

And so for the Hill, I make a Lime Blueberry Bread.  It is a new recipe,


  • 6 tablespoons (3/4 stick) butter, softened
  • 1 cup sugar
  • 2 eggs
  • ½ cup milk
  • 1½ cups flour
  • 1 teaspoon baking powder
  • ½ teaspoon salt
  • grated zest of 1 lime
  • 1 cup fresh blueberries
  • juice of 1 lime
  • ½ cup sugar


  1. Preheat the oven to 350F and grease 2 mini loaf pans.
  2. In a large bowl, cream the butter and 1 cup sugar in a bowl until light and fluffy.
  3. Beat in the eggs. Add the milk and mix well.
  4. Add the flour mixture and beat until smooth.
  5. Stir in lime zest and blueberries.
  6. Pour the batter into the prepared pan and bake for 30 minutes or until a tester comes out clean
  7. For the glaze: Mix the lime juice and ½ cup sugar in a bowl until the sugar dissolves. 20 seconds in the microwave and stirring helps. Drizzle over the bread after removing from the pan.

so I make extra and we try it out.


It does not disappoint the tasters and we take it to Boston.  This combination of flavors is a favorite of my AHA Guru, and that gives me a second big reason to bring this.  Now blueberries are anti-oxidants and lime has vitamin C, so basically this is a vitamin that I am bringing for Stroke Lobby Day.  It’s a healthy choice! Right?

But I am not flying solo this year.  So the baking choices are not mine alone.  Jason has an idea for a SECOND treat.  He wants to bring a truly sweet offering.


I temper the magnitude of his sugary choice a bit.  Instead of fruity pebbles, I pick Trader Joe’s fruit rings cereal.  Big difference, right?  Jason gets fruity mini marshmallows and I am sure the organic butter makes it healthy. YES?  He patiently stirs the butter and marshmallows while they melt.  He patiently mixes it into the cereal and then I try to patiently shmear the goopy stickiness into a pan to firm up.  I shmear, but not with the patience Jason had.  We let it firm up and cut it into squares for the trip.  Of course we sample the treat; surprisingly yummy.  The Red Goodie Basket is loaded up. (And there are plenty secured at home for us to eat later.)  Sure enough, the treats come in handy as a great attention grabbing-eye contact assuring part of our visits with our legislators.  These folks are busy and they meet a lot of people.  I cannot imagine that they meet a better looking child than we brought them, but still.  After we have said what we could say and explained the bills, we offer the goodies.  And that is when the magic begins.  The smiles are real because of the treats we bring, lovingly shared.  They stick to the ribs and keep our cause in the heart of the State House, for sure. When we leave the Hill, I have leftover lime bread. But Jason’s marshmallow treats are all gone!

But we are there for more than spreading joy through great baked goods. We are there to advocate for important bills.  I am there to put a face of Stroke on this issue.  So I have to know the bills and be able to speak about them when I meet with the legislators.  And this year is hard for me.  This year is not called Stroke Advocacy Day on the Hill.  I am not wearing blue.  It is called Heart on the Hill and we are all wearing red.

Every year the contingent that descends for Lobby Day is small, but persistent.  Our members are mostly caregivers, folks who devote their lives to make the survivor’s life better, possible even.  And then there are a handful of stroke survivors.  And I hear the same unspoken message, loudly.  Most stroke survivors are not like me.  They are not able to be here today and speak.  Their disabilities are too great to afford a physical day, hiking Beacon Hill inside and out. Stroke is brutal.  And I am blessed.

There has been a bill that I think would help a lot of people.  It is a coordinated system of care act.  I understand that it would do this:  if somebody calls 911 about a stroke, based on location and information given, the person would be sent to the nearest and best hospital for them.  I mean, Time is Brain for someone having a stroke.  This direction makes super sense to me.  But the act is stuck.  For some reason, it is not up for vote this year.

The bills that are on the table are important. There are 3 bills.

One bill says that healthy food and drinks have to be an option in vending machines on state property.  What a no brainer.  It wouldn’t take away the salt and sugar.  It would ADD healthy choices.  I know it would not be everyone’s choice, every time.  But the odds are good that if it were at least in the machine, it could be the choice.

Another bill wants to make sure that healthy food is available in underserved communities.  Worcester is a leader on this front.  Our mobile farmer’s markets are a model to the nation for bringing the farm to the urban table.  But there are other aspects I learned about.  In cities, there are neighborhoods without a supermarket in easy walking distance. With this bill, the neighborhood bodega could get funded for a big fridge, which they don’t currently have, from which they could sell fresh fruits and veggies, which the neighborhood needs and wants. Awesome.

And the third bill is Jason’s favorite.  It would increase accountability of schools to report the physical education they give our children. In my opinion, all students should have physical education every single day of grades K through 12, along with reading and math.  Great academic performance depends on a healthy body and brain.  We need to move every day!  Jason agrees.  Last year, he wouldn’t come to Stroke Lobby Day because it fell on gym day at school and he wouldn’t miss that class.  His school performs at the number one level in our state. And they have gym for all, weekly and 2 (that’s right) two recesses outdoors, every single day.  They choose to do it and the test results show it was the right choice, if you need to go by scores.  But not every child has this opportunity. This bill shows us how important our kid’s health is.

Every other year, I am drawn to the Statehouse to make sure that Stroke Survivors like me, get the care and support they need to have the best life possible.  I speak for those who have had a Stroke and aren’t as lucky as I am. People up there need see my face and hear the stories of so many who didn’t fare well enough to tell their own story of stroke.  People up there need to sit with me and see what getting help FAST saves.  The costs are too high in human life and medical bills to ignore Stroke.  I am humbled by the pleas I make each year.  I am saddened by how few survivors, like me, I see in the Statehouse. I am driven by need to advocate that runs deep into every cell of my being.  We have rights and we will be heard.

But this year we wear red. (You are right if you think I got Tim and Jason matching red polo shirts and me, a top that coordinates, in red.  Never miss a chance to show off my family and make my AHA Guru proud.) This year is about a group bigger than mine, bigger than stroke survivors.  It is about better health for my family, and yours. This year we are lobbying as Heart on the Hill. So for this Lobby Day, I am here for the 80% of Strokes that can be prevented, the ones that never have to happen.  I am here for all the damage that never has to be done.   Healthy diet and active lifestyle are the keys for preventing strokes in the first place.  We know that.  Let’s do it.

We park in the garage under the Boston Common.  We get to walk up Beacon Street to that golden domed building.  It is so impressive.  Behind us you can see the skyline of the city, our capital.  It is incredible to be here and be more than just sightseers.  I brought the family I got, after my Stroke. I am so grateful that Jason wanted to come.  What a gift. I told him, while we were baking that we were going to our capital to make things better. We would go there and tell the people who make the laws, what the good laws to have were and what to spend the money on.  I told Jason that it was our money and we had a right to tell them what to spend it on.  He liked that idea.

He was the only kid in the crowd on a day where one of the bills was all about kids’ gym classes and physical health.  Jason was meant to be there. We baked together. And we drove together. Image-_6a-5_31 We wore red and rooted for a new idea of common core curriculum, that includes physical education. Image-_7-5_31

I saw one other survivor, like me, from last year. I need to see him and know that someone else knows what I go through.  We are both here again, doing the footwork.  Talk about footwork,  he runs the Boston Marathon some years, even with some daunting (to me) physical disabilities.  I am inspired by his Grit and so grateful to be with him again this year.  His story needs to be heard every year.

This year had an added, unexpected bonus.  I got to see how this place, and this day, and this issue impacted my son.  I got to share this with him.  We were sitting for our advocacy orientation. Jason, Tim and I were in the front row as several Representatives and Senators spoke about our Heart Bills.  The Speaker of the House addressed us and I wondered what Jason was making of all this talk and pomp and circumstance.

One of the speakers in the Nurse’s Hall,  said “thank you for coming and spending the day in your Statehouse.” Jason heard that line too.  He sat up straighter and prouder in his chair, and winked at me.  My son now sees the Statehouse as a place he belongs in and has a right to be in. He knows he matters. He is important. What a gift! Hopefully next year we will get to suit up, show up and speak up at OUR Statehouse.

May and Stroke Awareness Month is ending for 2016.  I think we have done it proud.  I feel good about our contributions towards ending Stroke.  I have hope today. But May cannot end without one last, very important event.  I need to appreciate an essential figure in my recovery. I must celebrate the birthday of my purrfect caregiver.  Ciro turns 15 at the end of May.  I am not sure which day he was born on exactly.  He was 11 weeks old when I found him.  Or he was found for me. Second Chance Animal Shelter had not yet built their shelter.  But they were already saving lives.  They had foster care homes set up around the area.  In a very well-appointed 2-car garage, I met Ciro.  The garage doors were open and I saw many cages inside.  I headed for a far corner with a lone cage.  Hanging on the door of his cage, mewing sadly was the “Cat formerly known as Prince”.  I had seen him online and had to meet him.  Something in his green eyes called to me.  He and two siblings had been saved from a fire.  The siblings had been adopted early in the summer.  But “Prince” remained. He was shy and scared and hadn’t been socialized much. Life had been rough on him so far and he wasn’t sure there was much more in life.  In the moment I saw him, I knew he was purrfect for me.  I knew his life could be happy, somehow I knew.  And he knew something too, cats always do.  As a proud new momma, I knew His birthday would have to be celebrated, so I counted back 11 weeks. The last weekend in May, became his birthday. One day would not be enough to celebrate my green-eyed boy.

So, I rescued him that very day.  And he has returned the favor a million times over.  He has been witness to my darkest days.  He was with me for every single one of them.  And there were too many hopeless, desperate days when I wanted to die and didn’t.  I can’t have been a very fun momma to live with then. But, he was always by me, giving me all the love and comfort he had. He never gave up on me. And somehow we survived, together. Dark days have given way to a much happier life.  Every day, I am grateful that Ciro is with me.  He, above all others, knows my story.  He has shared my journey.  I try to give him the best I can.

Yes, I spoil him rotten on purpose. His favorite treat is butter.  His love of butter has earned him the name “butter licker.”  God help you, if you make toast for yourself and don’t leave a shmear of butter for Ciro on his table.  We learned that the hard way.  Fortunately for him, in our foodie, baking house, he gets spoiled with butter every single day of his life. He deserves it.  Life was hard for him before me and even harder for a while, with me.  My success had better be his success, he earned it.

I am so grateful to have shared 15 years with you, Ciro.  No amount of treats will ever be enough to tell you how much I love you. On your birthday, you can lick the butter wrapper to your hearts content. It has a couple of Tablespoons of butter in it and I put it on your table.  But in your passion, you knocked it to the floor and snout-pushed it over to me.  I will happily hold the wrapper still for you.  Have at it Ciro!  Happy Birthday! Image-_8-5_31









Ciro’s birthday