I can certainly identify with these words. Most of the time and most of the people I know, don’t understand what it means to be ill or disabled or in pain, when you don’t look the part. And I don’t wish that most people truly, personally know how I feel. I do not want them to identify with what stroke survivors can go through on a daily basis.
Right after my stroke, I did look and act sick and different. I was disabled in my speech and I couldn’t eat and I moved super slow and stiff. I shuffled my feet when I walked and couldn’t move fast or far. You saw Rachel and you knew she was ill. But over time, I have changed and healed in many ways. I don’t often look or act sick (other than the colds and bugs that are shared when you work in a school), I hope. In my head, I think I sound and look a lot worse than I do. In my head, if I am very honest, I mostly see the Rachel that my students 6 weeks after my stroke: weak, suctioning, drooling and drooping. My view of self was so altered by the sudden severity of my stroke. The pictures of me stuck in my head, and stick there still. I know what this stroke survivor’s body and soul deals with on a daily basis.
In reality, now, I don’t look the part of someone who has had a stroke. You could say, that now I have the “invisible illness.” My face doesn’t droop too severely, I only slur my speech when I am totally exhausted, I can swallow and eat, I don’t drag my foot (much) and I haven’t got a claw hand. I don’t look sick. Even 13 years out from my stroke, at age 43 I am still well below what society thinks is the appropriate age for stroke. I am not elderly. I am still too young to have had a stroke. (Although, the statistics will burst that illusion, if I just become aware of the facts.)
And it has been 13 years, I do look fine and I am still young, so what is the big deal about having my stroke. It’s over, right? It’s a part of the past, right? I can work. I have a family. I don’t need the machines anymore. Aren’t I fine? What do you think?
Everyone has a story. If you survive, life happens to you. In fact, each face we meet, lives with a whole host of daily dilemmas, scars and past war wounds. We never know what somebody endures and survives, and so we teach our children to be kind to everyone they meet. We know, in our hearts, that what we see of our fellows exterior is not the whole story. I don’t want to imply that I believe that we are ALL ill. No, but we all have an “invisible” self that would feel better, be better, if we were all a bit kinder and gentler with each other. It’s that simple.
May 10th 2003
Yesterday the Coumadin dose was 15 mg. During my session with Carole from 11-12, I was encouraged that there were responses in several areas of my mouth and throat. She had to break more often to make more notes. This is good. I try to visualize the responses getting stronger and stronger and working together. On the way home from the hospital, a leaf or something fell towards the car and I saw it out of the corner of my eye. On reflex, I tipped my head back and looked out the sunroof to see what it was. Oh crap! I don’t want to tip my head back and sever the artery. All night I wavered between visualizing the DPNS working on my swallow and my artery erupting from my tipping my head back. No sleep.
Today is a new day and I am not swallowing or stroking just yet. Coumadin is back down to 12.5 mgs today. They tell me to add one extra can of formula today to my “feeding” schedule. I guess they think I have lost enough weight. I think not. The one benefit of this d#@n stroke is that I am skinny. I know that it has been quite a rapid 30 pound drop. And hey, it’s not like I am recommending that anyone have stroke for weight loss as an good alternative to Jenny Craig. But I am 30 years old, sitting at home alone with no man, no babies, recuperating from a big ole Stroke! For the first time in my life, I am not battling my weight. I have lost weight and am considered skinny by those charts that hang in the doctor’s office. I am going to vainly and smugly enjoy that simple fact about me, for today.
I have Carole at my hospital for DPNS from 9am to 10am. I get there way early and just chat with folks waiting for the PT or OT or Speech appointments. I am ready with my suction in our session. She is moving fast with the frozen swabs. She grabs the packet and rips off the top. The swabs are flying around my mouth and throat quickly jabbing at the dead receptors. The cold vapor is still rising off the new swab. The used swabs are chucked into the trash can with one hand while the other reaches for a fresh packet. Sometimes Carole misses the trash can and the swabs land on the floor. I have time to grab them up, make sure they get in the trash, and swing my head up with mouth open wide enough in time for the next swab. Quite a team we are making these days. Carole marks some reaction in the points on my tongue and at the back of my mouth. They are almost in sequence even. But the swallow needs a powerful thrust and contraction of several groups of muscles, in sequence, to get the food down. A few perks of reaction, at a couple of points is nothing to write home about. I don’t get excited about a few blips on the radar. I just get back to work and make sure I don’t keep Carole waiting.
May 10th 2016
Woo Hoo! The “Crack” was a big hit at school with kids and staff alike for a post-test reward. You just open the container and this sugary buttery cloud wafts dreamily up your nose. Ambrosia! All testing students smelled the sweet treat before testing, dreamed of it during testing (or perhaps it was just me with visions of “crack” dancing in my head) and tasted the reward after testing. The indulgent nature of the sugar was too much for some students. Some students knew better and politely declined to eat the treat. No worries! Giggles abounded as the kids devoured. They worked so hard on the testing, I mean all really tried and worked towards solutions. I brought the remnants to the staff lunch room. When the bell rang at the end of lunch, I left the container on the table and my coworker giggled and said, “You can’t forget the crack! It might fall into the wrong hands.” Laughter and sugar, and outdoor recess in brilliant sunshine that is finally here after a week of cold rain, is the best reward in my book.
And after school, I have another “Woo Hoo” to shout! Yippee works too. Today is BOTOX DAY for me. It has been six months and I am seriously ready. I get the botox, which is the poison botulism in a medical form, to deal with the spastic muscles in the left side of my face and neck. Spasticity means that damage to the brain during the stroke, blocks messages between muscles and the brain. So the muscles are stuck in a very strong contraction, involuntarily for long periods of time. The spasms decrease mobility and can be wicked painful. The muscles spasm, thus the name “spastic.”
The sternocleidomastoid muscle which runs along the middle of your neck and sends tendons off all over the place are arguably the strongest muscles in your body. And that’s the one that is spastic on this stroke survivor. You probably are familiar with the “claw” hand on stroke survivors. The hand is curled up and not able to be uncurled and used with much dexterity, if any. This is a very common condition for Stroke Survivors. My brain stem stroke gives me conditions all over myself with a bit less rhyme or reason than the norm. Remember that the right side of my entire body has no feelings of heat, cold or pain. That is a blessing if you have spasticity, I suppose.
So my left side spastic muscle in my neck and on my face leads to pain like someone has the left side of my head in an iron vice and is really turning the screws. Cozy. It also messes with the trigeminal nerve which is responsible for a lot of face sensation and things like chewing, speaking and making my nose run wicked bad too. Fun. It gets hard to breathe through my nose, so I become a mouth breather. Ick. And at night, trouble breathing and pain and congestion really help make for a good night’s sleep. Not.
I am so grateful that I have the 3pm appointment with Dr. K, my beloved neurologist at my hospital. From school I dash home, give Ciro a nibble of wet food, brush my hair, give Gus a quick cuddle and grab Dr. K’s treat.
I always bake for my neurologist. He, and anyone in the neuro office that he shares with, is always appreciative. Gramma Harriet taught me well. Good service should be rewarded, and home baked goodies rarely fail to please. Thank You’s are so important. I am not great with the written notes, but I am consistently dedicated to giving thanks with goodies.
I am so grateful to be able to do something for Dr. K. His care of me since day 1 in 2003, is second to none. I only see him twice a year now, for the Botox which gives me such a miraculous relief of pain for a month or so. Each visit, I give him a big hug. We talk about our families. He asks me how the baking is going. This time, I can tell him about the writing I am doing. Each time I see him, I ask if it is getting any better out there? Are people listening to FAST and getting help soon? Dr. K tells me that it is not much better. People still think that if they get a good night sleep, they will be better in the morning. Not with a stroke. Time is Brain. I want to spread this message so badly. 80% of strokes never have to happen, if we heed the warnings and PREVENT them. Every time I see Dr. K, I want better news from his end and I want to tell him about what we are trying to do to get the message out.
Back in the day I saw him all the time. I had multiple MRIs, consultations and new treatments for the variety of neurological conditions that came over time and was constantly being re-evaluated on the healing process of my artery. Was the artery opening back up? Was it healing open wide enough? Were there any pockets? I had no real idea what any of this meant back then. But I felt safe with him. And now, he helps me. I am a good patient for him. I trust him. And so I must bake. His favorite in Chocolate Zucchini Cake. But today I have Blueberry, Lemon, Zuke Bread with a Cinnamon Sugar Swirl for Dr. K. I made two loaves. As it is the first time I am trying this recipe, http://www.yankeemagazine.com/recipe/watchtides-lemon-blueberry-zucchini-bread
one loaf was immediately cut up last night for tasting. I mean, what if it were horrible? I couldn’t give Dr. K something gross. We have to taste test, right? So we did and it passed with flying colors. My mom noted that it might be a contender for my Quick Bread entry at the Spencer Fair this year, High Praise indeed. I mark the recipe on the August page of the calendar to remind me.
Once I have the goodie in hand, I pick Jason up from school. The two of us go to my hospital together. Jason goes into the fantastic hospital gift shop and picks out a present. Yup, I go to the doctor and he gets a present! He picks out a plush, stuffed Siberian Husky. He doesn’t pick the smallest one either. It is a great choice and I buy it because it sits next to the stuffed doggie that I got when I was in the hospital for my stroke. Thirteen years later they are still selling the same puppy: If it ain’t broke, why fix it? The stuffed dog, quite beaglelike really, was a gift and a comfort and treasured by me to this day. I tell Jason about my puppy at home and we introduce them when we get home from Tae Kwon Do.
New treasure in his hands and bread gift in mine, we ride up the glass elevator and sign in to the appointment. The office already has my dose of Botox. I called the specialty pharmacy a month ago, ordered, and paid for my dose to be delivered to my hospital. Today I make a copay for the visit when I arrive. The ladies that manage the office are so nice and always so impressed by Jason. One, is a big Red Sox fan and I am glad our team is doing well so we can chat cheerfully. The second lady saw me on TV in the Heartwalk PSA. She thought it was me, but she wasn’t sure. And she wanted to check with me but had no idea when I’d be in. But I did come in and she did remember and I was flattered she recognized me. The new canine treasure in Jason’s arms brought about a whole chat about dogs. We showed a snap of Gus and she showed her Pitty, Beau. Then she HAD to show us her new granddaughter. What a gift!
The nurse took us into the special room and we made ourselves comfortable. This is no ordinary botox that I get. No one just takes out the needle in a regular office and injects the botulism into wrinkles on a forehead. (Believe me, I have urged and bribed Dr. K with goodies to get him to put some of the Botox into the ever increasing deep wrinkles on my forehead. But he never does!) This special room has a big machine. It is an Electromyogram Botox appointment so I assume the machine is the electro part. It makes a lot of noise and gives a lot of info to Dr. K about the level of spasticity in my muscles. Based on the levels that he detects through lines stuck on me, he knows right where to inject the Botox. This Botox essentially paralyzes the muscle for a bit. The spasm stops, so the muscle can move with ease and be a bit more under my direction and guidance. I have had great success with this treatment. There is a risk that my swallow could be affected as he is poking about in the same region of my body to inject the botox. But I trust my Doctor, and have felt only good vibes after treatment, never a problem swallowing. So it is full steam ahead.
When Jason was little, he sat outside the room or went for a walk to the desk when Dr. K came in with my dose. He might have been a bit put off by the needles or noise. Recently, he is intrigued by both and chooses to stay for the visit. So this time, I ask him if he will take some pictures during the procedure for the blog. I want to get the wires, machines, needles and bizarre facial expressions I have to make to help Dr. K find the best spot to inject. Jason is all for it. But he says he will have to take a video too because he needs to get the noise from the machine. Seriously? Yup.
Dr. K comes in and I give him the goodie. He says it is too much and I shouldn’t have and then tucks it under his arm to bring to his office while he gets my dose of Botox. He says he heard I spoke for the nurses and says they were impressed. I love that he hears about me through the grapevine and is proud of his patient. He introduces me to a woman interning with him who is going into rehab medicine. Excellent. He asks if I need the Botox and I answer yes before he finishes speaking. I am rude to interrupt, but v. excited to get treated. Dr. K leaves to get my dose and the intern asks me about my rehab experience and a bit about my stroke. I get going, excited to share. Jason chimes in too. And the three of us pass the time happily talking about stroke stuff. (Does that sound bizarre, happy and stroke in the same sentence? Truth for me though!)
When Dr. K comes in, I hand Jason the camera. Dr. K attaches two probes to the back of my neck with the lines that run to the machine. I face the wall. Dr. K asks me to resist his push and grimace, to make the muscles really pop. I do and he takes the needle in hand, inserts it into my muscle and pauses, turns on the machine which shares great banging info and slowly injects some Botox into the muscle.
The needle is big and goes in deep, I think. The muscle is hard and painful, I know. As the medicine goes in, the pain is sharp so I dig my hands into a fist and wait, forgetting to breath. I say the pain is sharp, but I am a wuss and am not sure this description is accurate. Dr. K stops the machine and takes out the needle. He repeats this in 4 or five locations on the left front side of my neck. Jason records the lot.
The needle comes out. The machine goes off. Dr. K removes the lines and wipes that seeps a bit where the injections went in. Jason tells the intern that last time, “the blood gushed a lot from each hole in my neck. This time is nothing.” Out of the mouths of babes.
I give Dr. K a big hug and a handshake to the intern. The next appointment is made for November and Jason and I head out, up the stairs of the atrium, past the waterfall and out to the car. I love the sky outside my hospital. We have to fly home and get Jason changed up for double Tae Kwon Do.
The neck, my neck hurts a lot right now. I try not to worry about a possible harm to my swallow from the poison that I dearly love. I focus on the pain and visualize the medicine meeting the muscle and doing its job. At the end of the day, the pain fades. All in our house are tired from the day and I am optimistic that tonight I will finally, at last, after a couple of months, sleep well. That is something to be so grateful for. And I am.