Stroke Awareness Month Tawpic for today: Discuss. (This Stroke Survivor needs these words today. Sorry, I will use the first person when I tawk about myself. I am paying the price today of doing too much and not being present.)
May 4th 2003
12.5 mg of Coumadin today. I have to up the dose of Colase and get my innards working more efficiently, if you know what I mean. I get to Bolus the food into the tube. It is so strange to me to intentionally, on purpose, put nutrients into myself, bypassing the throat and pour this “shake style goop,” directly into a manmade hole in my belly. A hole that resists healing around a chunk of plastic (a kind of gasket I guess) that leads the tube through skin and fat, a lot less fat than a few weeks ago, through and into my stomach. All the internal workings from my mouth to the throat to the esophagus down inside me are dormant. I imagine them as an abandoned cowboy town in the Wild West, tumbleweeds roll through empty streets. The wind whirs about picking up dust and taking it through broken windows into an abandoned saloon. So I crack a can of formula, undo my taped up tube and “Bob’s your uncle.” I actually make “glug, glug, glug” sounds as I pour it in. I don’t feel hungry before I pour and I don’t get full afterwards. Oh well. It works. They say I am stabilizing and getting stronger. And Carole says that there have been a few reactions during my sessions. Maybe more soon?
My Cuzzin is coming up today. That makes it a good day, especially true as today is one month since the stroke. A whole month, and life goes on I guess. But I worry about the 10 o’clock hour. I fear what will happen. My Cuzzin won’t be here til a bit after that time. But she will come and then I will be ok. I feel bad for all the driving she has to do to come see me, only to stay for the afternoon. And then she drives all week for work. My Cuzzin goes all over the Cape helping people find and keep jobs that are good for them. I never really realized the importance of what she did before April 4th. But now I do. Not everyone can make themselves fit into the specific requirements of a job that they want or are even qualified for. And what we are able to do for work and want to do, changes over our lifetime. I see that. We, I mean me, don’t always know best about how to help ourselves. And sometimes, always lately for me, can’t help ourselves. Sometimes, all the time for me, I need help from qualified professionals, like my Cuzzin gives to her clients.
So after her work week is over, she drives two hours each way to hang with me, and she helps me. I am so grateful that she comes. My Cuzzin always brings fun things to see and smell. She has stories of life by the ocean. She smiles and I laugh. Sundays pass quicker when My Cuzzin comes and she brings a warm, alive, feeling into my house. We take Lola for a walk. And I can and do go a little bit further, without even really trying or thinking about it. I just follow my Cuzzin and take each step with her. (Let’s be real. I haven’t even made it all the way down my street, but I am further along each week.) It is a good kind of tired when we get back to the house. And the house is happy with her there. She plays with Ciro, Zoe and Lola. Their toys get dusted off and end up all over the place. She talks to my babies and moves around the house, sitting in different chairs in different rooms. We don’t even hang out in the bedroom while my Cuzzin visits. And when she leaves, before the traffic gets too bad, the house stays feeling warm and safe. Her laughter and energy lingers. It’s like the house has life in it and it smiles. The smile lasts on the house, my 4 leggeds and me, into the new week. For that, I am so grateful.
May 4th, 2016
We are 4 days into Stroke Awareness Month and things are coming together here. The reinforcement blue lights have come for the front of the house. It looks pretty good. I did add a deep blue house flag. It has a great blue heron on it. I saw one at Elm Park on May 1st so it seemed like a sign to me. The blue heron is a brave regal symbol for the month of stroke awareness. And you can’t get a blue, stroke awareness house flag, Yet. Note to self: Next year, I need to do the pear tree and other shed with blue lights.
Inside the house, I have the blue mugs out: the new blue glass tea mug from the outing with Mom and Jason, a blue and white mug with the skyline of Provincetown (a town I love) from a friend I love, and a sponge painted blue mug with a heart on it from Mom. I have a blue plate out that comes from a powerhouse lady friend of ours who passed away a year ago. On the plate I can put the “Blueberry Thrill” cookies I just made. I have a standard cookie dough recipe that is tried and true for me. I added blue “things” to it: chocolate covered blueberries, milk chocolate bars with rice krispies inside, crushed butter wafer cookies and a splash of blueberry soda. Bizarre set of ingredients on paper, and maybe the dough even looks slightly more greenish than blue, but they work, believe me.
I finally finished the blue fleece throws that go on a kitchen chair and the recliner. Every year on Black Friday, Jason and I trek out to Joann Fabrics. They have an incredible sale on Fleece that day. I load up for the year. Jason picks out a new fleece for a winter blanket, this year was Pokemon. I got a raccoon and deer covered pattern for a new blanket for Wessyfoo. There are so many incredible, snuggly, soft, and decadent warm fleece patterns. And the price is only one day at year. This year I also got Blue with White Polka dot fleece. My hope was that I could make Stroke Scarves, with the FAST letters somehow on the white dots. I couldn’t figure out whether to embroider, draw or iron on the letters. And the fleece is so thick to make a scarf. And as May is Stroke Awareness Month, is fleece the right medium for the message in spring? So the fleece stayed folded in the study, waiting.
And then the idea came. For years, I have been putting two pieces of fleece together, cutting strips the entire way around and knotting the two together to make a tie blanket, very thick and luxurious, and no sewing. But I had wanted to try a new technique. Pinterest showed the way. There is a rotary blade cutter that makes holes like a paper hole puncher on fabric as it rolls over the material. V. Cool, if it works. I Googled the success of the tool, especially for a techno eejit prone to hurting myself with said tools, and was encouraged that it might work for me. The item was purchased. I pushed the tool cover to reveal a very sharp blade. The blade, I kept my fingers away from and rolled it around the edge of the fleece, and then used the holes to crochet a border into. It is a super simple way to use one layer of fleece and use up lots of bits of yarn. (And my hands fatigue quickly with all the cutting if I do the scissor method. I totally ignore that tiredness, make the blankets for Christmas and then wonder why I can barely move my fingers for two weeks.) The Blue Polka Dot STROKE fleece, became two throws in the past few days. Ciro immediately cozied up to the one in the kitchen. It must look good if he thinks it is good enough for him.
Outside the house, the blue lights shine. Inside the house, there are blue blankets, mugs and baked goods. And on me, there is blue too, of course. The Blue Handbag is out for the month from my collection. Tim got me this handbag for World Stroke Day a couple of years ago. I mean, I had to have it, Right? Right… And there are blue clothing pieces for all layers, except the undergarments. Yet! You see my dear friend Jennifer taught me that you must have matching and beyootiful sets of “foundation garments.” You will feel better throughout the day, about yourself, if your bra and undies match! But I am lacking the former of the two, for now. So clothes are blue, and jewels too. I wear the necklace my Cuzzin gave me that day I got home from the “home.” It has been reworked a bit over the thirteen years. I love each reincarnation and the Cuzzin who makes em.
On my right hand, for the month, I have two sacred blue rings to alternate between. One is the antique Navajo turquoise from Jean Granny. (Good story about that.) And the second is an antique, blue glass ring that I found on a wonderful post stroke trip with my college sister/friend. On a scenic jaunt one day with her and her daughter, we stopped in a small antique shop. And there, I found this ring. Nothing special to most, but treasured to me for the company I was with and the good memories it brings when I wear it. Both are blue, and along with the handbag, musts for MAY.
And then there is Teacher Appreciation Day at Jason’s school to bake something blue for. I have been thinking about my college sister/friend. One time, long ago, she took me to the Jordan Marsh near her house. It had the bakery in it. And they made those famous Blueberry Muffins. I had heard about them from Mom and Gramma Harriet who got them in Boston when they were young. I always made/make my Gramma’s recipe for blueberry muffins which comes from an old yankee cookbook called, RAIN, HAIL, and Baked Beans. But when my sister/friend had me try the Jordan Marsh muffin, I knew that someday, I would make it myself. The store closed up shop years ago, but Yankee Magazine recently published the recipe. Yippee. I love thinking of that happy day with my sister/friend and I love trying a new recipe. And I have to bake with blue “things” this month. I must.
So yesterday, after school, I set about to make the muffins for Jason’s Teacher Appreciation Brunch. (Of course I doubled the batch to have some for “the mens.” More is better, right?) The picture with the recipe showed a paper liner for the muffins. And I thought that it made sense, but didn’t use them. As the muffins baked, I finished reading the recipe which ended up highly suggesting paper liners as the number of blueberries involved makes the muffins tough to get out of the pan. Classic Rachel to finish reading the recipe AFTER the food is in the oven.
As the muffins baked, I prayed for their safe and whole exodus from the pans. I mean, these are for Jason’s school. They have to look good. I let the muffins cool totally in the pan. That was a suggestion from the recipe. And then I used a thin metal spatula, which I usually spread frosting on cakes with, to carefully loosen the goodie. I took my time. I found myself gripping the spatula tightly, with all my might. And the result? Successfully excavation of 12 good looking muffins for the incredible staff at Jason’s school.
I see something while I am baking the muffins. And I know that my Jean Granny is with me, in spirit for a reason. She is there because I look to my hand and see a tissue wadded in the palm, held by thumb. The other four fingers are free to function. I can bake, talk, teach, pack lunches, fill the bird feeder, clean the house, decorate and even drive with a tissue snug in my hand. Jean Granny always had the tissue “at hand.” Ha Ha on the funny! Her hands and that tissue were always a comfort to me. It’s strange the way I remember the hands of people. Faces fade sometimes, but hands working, strong hands, are clear to me in my mind’s eye. For Jean Granny, after her stroke and later in years, her nose ran. I guess she found a way to be prepared, deal with it, compensate for the ooze. At first it was a linen hankie in her hand. As an antiques collector and Yankee, she had quite the collection. There were ones with lace or pretty flowers on them. But over time, and after the stroke, tissues often appeared. They were, and are, not nearly as stylish, but they are easier in the hand and gentler on an active nose.
I look my own hand and see the tissue. Two things come to my mind. The first is that I love how she loved me. One, of countless stories I could tell to illustrate this BIG truth in my life is a follows. Jean Granny always told me this story about myself, over season and years she told the same story. We used to walk around the yard. Our route would start from the kitchen, where something fabulous was surely baking, go down the back steps, head out around the garden and perch on her bench for a minute. Then back out and down past “the dingle” and the old apple tree to the “brick, ” AKA the brook. The path was tried and true. I can see it in my mind’s eye. But this particular day, I was only just walking and talking, twoish I guess to be my age. We reached the side yard with the sun shining and the daisies and buttercups coming up. As I teetered, Jean Granny offered to hold my hand and help me walk to the brick. My response was to grab my own two pudgy hands together and say “No, I hold my own hand.” I wonder why this story stuck in her mind. What did she see as its’ magic and meaning? And why did she repeat it me so many times? What understanding of myself, or her, or life was I supposed to get from this moment?
Countless times she told me and all around us, this story. Countless times I have told this story. And the meaning changes over time. Certainly today, I tell this story and feel the love and magic from Jean Granny. One thing that I have known for my entire life, is that I had the two best Grandmothers in the world. And they loved me. To feel that love around me 41 years later is a gift I treasure. What is more important in life? That feeling is what I run to and strive for and seek every minute of the day. It is what makes me feel human. It makes my life matter. And yet, that love is always in me and with me. It is ever present and available to me, if I slow and see it and be still enough to feel it. So as I catch sight of the tissue wadded in my hand, I think of that.
The second thought that comes to mind is, “yikes.” I have gone too long, way too long for me, on warp drive and not really, seriously for me, slowed down to be present in my own skin. I have really seen Jason and Ciro and Tim and Gus and my students and, and, and. Who is missing from that list? Me. I haven’t been listening to my body. And as the right half of my body is kinda quiet all the time: no pain, heat or cold sensation as it is, unless I do lots of Reiki, which I haven’t been doing. My body is half on very low volume/ mute all the time. I mean, I banged my right arm hard the other day as I came around a corner too fast. I said to myself that it would bruise up nice in a few days. But I didn’t feel it happen. And without pain, I didn’t really slow down to check if I was all right, register that it happened or consider slowing down to avoid a future bruise.
And the left side of my face has the spastic muscles which make breathing and talking and sleeping tough at times. If I am stressed about work, check, or it has been almost 6 month since my last Botox injection, check, or if I am worried about the big bill I get from my insurance on top of the money I already pay to buy the Botox dose and the copay for the visit to my neurologist to get it injected, check. If I am angry at the insurance company for setting the amount I need to pay so high and the amount they cover so low for the Botox because I am an outlier in needing this treatment within the population and yet it is so very very helpful to me and I don’t make a huge income as a public servant anyway, check, check, CHECK, CHECK! If all this is whirring inside me, I ignore my stroke survivor body and soul.
I don’t want to miss out on anymore of my days. I have too many things that I get to do, can do and dream of doing every day. I get “tornadic,” is that a word?, in my actions. I whirl physically and spiritually. “I move fast,” as Gramma Harriet used to say, about herself as she filled her days with activities and making things.
But when I don’t listen, my body talks louder and louder until I have to listen. My body screams at me and then slams me on my butt. My face locks up. I can’t fully open my mouth wide. I get an ongoing headache on the left side of my face and skull. My nose runs more and I find myself with a tissue 24/7. My tongue doesn’t work as fast and so my speech slows and slurs a bit. My bones ache. The cold feeling gets into the right side until the bones feel like they are teeth, chattering in the Arctic. I get even more klutzy and clumsy and bash my body into any and most available walls as I whirl. On and on it goes. And check, check, check on all of the above. So last night I got body slammed by my own body! And today I am home sick from school. I am down for the count. I do rebound quickly IF I slow down, and do the things that they taught me: rest, sleep, warm compresses, and massage my face like they taught me in PT/OT and Speech years ago. Today this teacher is getting a lesson, at home.
The Golden Girls are on TV and Gus is on the bed as I write this. Tim just got back from taking Jason to school, with the muffins. Jason went into school alone. He didn’t want to walk with Dad on his mission to drop off the treat for the staff. Jason gave his hugs at home, but at school, he goes in alone. I admire his independence. I feel bad for his, slightly rejected and dissed, Dad. I am glad to be in bed, cozy and warming with a cup of tea, in a Blue mug.