Stroke Awareness Month Tawpic of the Day:
Touchy subject.
Controversial topic.
What does the word “life” mean to me? What matters to me in my “life?” Do I have a “comfort zone?” If I do, do I get stuck in that zone and not stretch myself? Where do I stand on the subject of “change?” A friend of ours often says, “If I am unwilling to change the little things, I will be unable to change the big things? At our coffee date this week, this was the tawpic Tim and I discussed.
Over his black coffee, Tim talked about being used to change. Change came easy(er) to him. He grew up knowing that change was a fact of life. As a child, conditions changed a lot and Tim somehow intuitively knew that he was powerless over the changes adults made in his life. As an adult, he had moved a lot from neighborhood to neighborhood, city to town and coast to coast. He constantly changed how he looked and how he acted to try to fit into the new locations. Life events led Tim to a new spiritual way of life versus his previous ways. He chose to adapt to change, roll with change, survive the change and choose to make changes. This fluid view of a changing life, makes for a man much more comfortable in his own skin. Tim said that his “comfort zone,” is the result of the changes. It is a place where he finds “comfort” and is comfortable, so different from what I believed. I thought my understanding was how everyone interpreted the phrase. What a gift to talk like this and be able to learn so much.
I, on the other hand, define “comfort zone” differently. I am comfortable spending my day with twenty plus students in my class and hundreds more in the school. The noise of school is comforting to me. Speaking in front of 20 or 200 students is fine with me. And I have extended that comfort to speaking in front of large groups of unknown adults too. I take comfort in my 20 years of experience. I have a handle on the needs of my students and the curriculum they are expected to master. I have a tool box of methods that work well for me. In this sense, my comfort zone is similar to a strong foundation. I can build on it. The first school I was at, was my home for 18 years. It certainly was a comfort zone, but also gave me a foundation to stand on when I chose to leave.
This was made so obvious when I left that school and moved to my present school. It was so strange and foreign and anxiety provoking. Just the ride to school, for example, was way out of my comfort zone. I knew every tree, house and business on the 6 minute drive to my old school. The trees in front of my old high school were hundreds of years old. There was a beech and maples and an oak. The leaves turned gold, yellow and brown in the fall. Branches fell due to savage ice storms in the winter. Each spring the maple had greenness first. I knew the road with my eyes closed.
It only takes 4 minutes to get to my school now. But the roads head west, not east. There are three ways I can easily go to work. I varied at first, but now stick to one route with a coffee shop break at minute 3 of the drive. There are a couple of houses that I watch throughout the seasons. I am watching one stand of trees change in particular. I have “my parking spot” at school which I can get if I get there by 7:05am. But the car is not on auto pilot for the commute yet, after almost 2 years. In my always very brief commute, I think about the day to come or breathe deep and think about the transition home. I try to use the “me” time well. A lot happens inside my head during this short drive. I don’t really focus on the scenery outside the car. I had no idea how the road became a part of MY journey even when I wasn’t really paying attention to it. Curious.
That is a professional comfort zone. In my personal life, I can get settled and find comfort in so many ways, now. The walk around the block that I take Gus on is tried and true. I rarely deviate. My apple pie recipe, crocheting a granny square afghan, driving to Wessyfoo, Sunday breakfast of bacon and eggs, my remote control, and decorating my house for any holiday is in my comfort zone. In fact, these activities become a meditation of sorts. I can feel my body relax and my mind slow down. I find peace in “the doing” of many of these previously admitted items in my comfort zone. In that way, the comfort zone is a blessing. Peace is certainly a desirable state for me.
There have been many times in my life when I lived in the “comfort zone” out of fear. I feared failure. I feared the unknown. I feared change. I feared myself. I hid in the comfort zone, “the known” and called it “rooted in tradition.” Bull. It was “root-bound” in the safety of the past. Before, during and for a long while after my stroke, this was my home. I lacked faith to venture out. I didn’t believe that there might be, could be, or was a path which had a firm foundation AND led towards a future filled with hope.
I do believe that now. So I do have a comfort zone, but is not super-stayed-and-stagnant. Since I made peace with my stroke and accepted change as a fact of life, I change an awful lot, often. For me, living life on life’s terms, works best when I rely on and celebrate the traditions of my roots. The wonderful actions of my family before me and things they collected, I cherish. When I honor the great treasures of my family or community I feel solid and strong. Then I use that strength to take a leap of faith and try something new. I am constantly amazed at the places, people, 4 leggeds and skills in the world. And I am bowled over by the fact that when I tip-toe out of my comfort zone, I try and often succeed. The world shows me great beauty and kindness, which I never knew was there. Now it is not always a safe path that I choose or find myself on. Life happens. People I care so much for choose a path that leads them away from me or they pass away. I have to let them go. Places I love close and I am scared there will never be another one as good. A special mug slips out of my hands early one morning and shatters to bits on the tile kitchen floor. An ancient tree that I believed to be immortal, dies. Something is stolen and I feel vulnerable. Sometimes the challenges and pain and heart ache are mammoth. I have to be open to good and bad passing in and out of my life. And I can’t do this alone. I need help. The spirits of those around me and hope within me sustain me for today. That is all I ask for. That is all I need.
May 25th 2003
Coumadin dose is 12.5 mg. I take it and I try to imagine that the artery in the back of my neck is healing. Healing, they tell me, means that it is opening up wider, back to the original state. So I try imagining the artery back there, opening wider and wider and getting stronger. Next month they are going to do another MRI and check the progress. I hope it is getting better.
I really didn’t want to get out of bed today. My whole right side and especially the arm is so cold. The weather is getting warmer every day. But my side is getting colder. Ick. By the time morning comes, after the night under the covers, the pain lessens a bit. Getting out of bed today seems like just asking for more cold and lots of trouble. And I have no energy and lots of anxiety. But Nurse Lola demanded that I get out of bed, face the day and FEED her. So I did.
The truth is that, today is scary. Today is the day. Today they are going to take my PEG tube out, whether I like it or not. I don’t need the suction. I don’t use the Kangaroo. My swallow is improving, though there is still pooling of food going on. So Carole scheduled the removal of my PEG tube. I told her it was too soon. I told her I didn’t think the swallow was stronger. Maybe it was even weakening. I asked what would happen if my swallow disappeared again when I was home alone and they had already taken the tube out? I showed her how well I had taped the tube to my tummy now. The tube was no bother to me. Why do they have to take it out now? What will happen when the next stroke comes if I don’t have my tube? She said that my swallow was stable. I said, “Please, not yet.” She said, “It’s time.”
I had tried to buy some time. It didn’t work. The wheels were in motion. I was to show up at 930am for same day surgery. It was a simple surgery, they said. Everyone in my family was so excited for me. I was getting so much better, in their eyes. They seemed happy for me. Every one of my friends and all the nurses and staff at my hospital thought that this surgery was great news. I tried to believe that they believed it was a good thing and that I was ready. I mean, they knew me here at the hospital and when something happened, they would be right there. And it would be good to be able to wear more of my regular clothes and not worry about ripping the tube out or feeling it tug and pull with zippers and waistbands and such. Being able to wear whatever normal clothes I wanted would be a good thing. And I still had the suction at home, in case. OK. I will go through with it. The nurses check me in and tell me how awesome it is that I am doing so great and getting rid of the tube. They tell me that they haven’t seen someone get the tube removed so fast. They said it was so great that my swallow had recovered. And in that moment, I believed them. I had a big stroke and totally lost my swallow. And yet, here I was, standing and swallowing. This surgery was a good thing. I had improved. I smiled a pretty real smile for a moment.
They were going to have to remove the tube bits that were on my insides through my mouth. OK, I say. They had to take them out endoscopically because of high dose of Coumadin that I am on. OK, I say again. In my head I realize that I am not doing that great if I am still on a high dose of this powerful blood thinner. If I need a high dose for this long, things are kind of bad. I might be “stable,” but it doesn’t sound like I am getting better. I realize that they are going to pretty much knock me out, to go through my mouth. NOT OK. What if they mess up my swallow during the surgery? I can’t lie back so flat like they want right now. What if I can’t breathe or swallow or the artery is hurt again? NOT OK, I scream inside my head. Once they give me the dopey drugs, all protests stop. They better be right about this surgery. The next minute I am waking up and the doctor is saying that I did great and everything went great. Dopey or not, I try a swallow and it works. So far so good. Definitely dopey, I ask him to move the mirror so I can look at the place where the PEG tube was. Doctor swivels the mirror and me so I can see a bandaged belly with nothing else sticking out. It looks so bizarre to me, so flat. Still dopey, I ask him where MY tube is. He smiles and raises his eyebrows. I guess I looked serious. So he showed me my tube. It had just been cut off and what was in his hand was the bit I knew well. There it was. That was mine and it was no longer attached. The next words were not mine, although they came out my mouth. “This is a big deal. You are amazing. Can I have my tube to take home? Will you autograph it?” He stopped. The nurses stopped. They laughed out loud, a real good belly laugh. I don’t think this is the usual conversation that they have with their patients. And then I realize that I am not an ordinary patient. “Please. I had a stroke and I want the tube as a momento.” The Doctor agrees. One nurse wraps some hospital tape around the tube. The Doctor takes the tube and a pen and signs. The nurse puts the tube in a big hospital Ziploc type bag and hands it to me. I love it. Totally cool take away from this event. And I really am grateful that the Doctor did such a good job.
My home directions tell me that I might get a sore throat and not to get worried. It says I can eat and drink normally, for me. I might have one of my leftover cans of formula. Easy. The paper says to keep taking all my medications and the Doctor also says that I definitely should take my Coumadin. The discharge instructions also say that I will be silly-headed for a day, and so I should rest. Mom will drive me home and then I can just rest and take care of the babies. The paper says that I should not sign any legal documents or make big decisions until tomorrow. That is OK by me. I made my big decisions already today. I decided to show up for the surgery. And I got my tube back, autographed by the man himself. I am surprised by the last thing on the paper. It catches me off guard and sticks hard in my still dopey mind. I get really angry inside because I don’t understand the words. What do they mean? How can I possibly do that? What was the Doctor thinking to write that to me? Who am I now? What is my life now? Why did I have to have a stroke? Is this all there is? In the “Special Instructions,” is a handwritten note from the Doctor, only 4 little words. “Have a good life.”
May 27th 2016
*I have saved my baggie with autographed tube for 13 years. It was always in my big, black binder. It was always there. It is not there now. Where is it? And now that I am writing about it, I am desperate to find it. I have been ransacking the house for weeks. No tube. So now, I am asking for help. Some pray to St. Anthony, the patron saint of lost items. My Buddhist Reiki Master, had her own twist on this. She called out to “Tony!!!!!!!” This personal approach appealed to me. So today I ask Tony to lead me to my tube. If you could ask too, that would be great.
On the professional front, this teacher became the student today. I learned a lesson the hard way. On a hot day, with temperatures rising well into the 80’s, in a classroom on the top floor with sun blazing in and a mere 12 days of school left, I stepped out of my comfort zone, totally inadvertently. It was one of those accidental, unplanned events. I didn’t do it on purpose. I didn’t think about doing it. I didn’t mean for it to happen. But it happened anyway. (Life is good.)
I think it was heat induced. I really don’t do well with the heat and humidity. It’s a stroke thing, one post stroke condition I have, that doesn’t seem to be going away this year. Some of my stroke things come and go or change their degree over time. I still can’t regulate my body heat. I am still kind of robotic with that condition. My body takes a long time to adapt to sudden temperature change and doesn’t like extreme temperature much at all. I try to ignore the conditions and be “normal.” I look normal even when the hot temperatures have me in their grips. Inside, I am boiling hot as if I was in a sauna. But I am not red faced or sweating. Inside, I am exhausted as if I just ran a marathon. My muscles move slowly, I feel heavy, my arms and legs ache, and I can’t catch a full breath. But all you see, is my shoulders heaving a bit in effort. Light hurts my eyes and noise hurts my ears. But I just sit quietly in the back of the room and focus totally on the task at hand. I look like I am “busy.”
So, today is one of those days that I realize “I am just not that powerful.” Today I am reminded that I am a stroke survivor and things work a little differently inside me. I see and hear and feel what’s going on with me, as hard as I try to ignore.
The heat got to me today. We turned the lights off and turned both fans on high. I sat at my desk and entered the math grades into the computer while the kid’s transitioned to reading. G2, in her t-shirt that says “I don’t need Google, I’m GREEK. We know everything,” had things well in hand setting up for the next subject. I don’t sit much at my desk. But today, I thought I was leading by example. I appeared calm on a hot day. And I was keeping an eye on a student seated at the table next to my desk. He was diligently working on the computer, trying to contain all the adolescent energy building inside him. I looked like I was doing great. But my kid’s and G2 are smarter than I am and they knew better. That’s right. They knew the truth about me before I did. Their teacher was goofy-brained and light headed from the heat.
Two students, seated at a couple of the college style desk/chair combos directly in front of my desk, were starting to bicker and getting on each other’s last, hot nerve. I had tried the usual, “Please stop talking.” I had tried to have them turn their chairs away from each other. I had tried to ignore. Their classmates tried too. “STOP TALKING,” and “do your work,” was repeated several times by many different members of our class.
My next words came out my mouth when I thought they were still inside my head. “What does “Chillax” mean?” I said it out loud. I knew that in my head I was saying the word to the bickering boys. I guess I did more than just think the word. The student working on his computer next to me, heard me and answered. He knew what it meant. “It means chill out and relax,” he said without looking up from the screen. He was confident and precise in his answer. And all the kids in class agreed. They had all heard my question, were laughing at my ignorance of basic modern language and agreed that the answer given to me was correct. “How could I not know that word? Do you know what LOL means? What about AKA Miss?” They sounded their questions rapidly and laughed more when I answered LOL correct but drew a blank on AKA. I looked around my room and took a few breaths. The smiles I saw were genuine and kind. They were not laughing at me as if I were stupid. They were playing with me, in the best sense of the world. They felt good that they knew something I didn’t. They loved that I had asked the question for a change, without already know the answer. And they were proud that they had been able to teach me something.
“Chill out and relax” combine to make the new word/command, chillax. I had used this word, I hope appropriately. “Chillax” actually means something specific. It is not just slang. It is a contraction without the apostrophe. I had tried to figure out what it meant. I got as far as the “chill” part. I get that chill means to calm down. And with the “ax” part, I understood that as the way some kids read the word “ask.” I tried to combine the two and it didn’t make sense to me inside my head. But I never asked anyone what it meant. I certainly didn’t ask the experts, my sixth grade students.
But today, in our hot and bothered classroom, I tried something new. I got outside my comfort zone. I asked a question out loud, that I wanted the answer to for a long time but been afraid to admit that I didn’t have the answer. Asking for help, asking that question left me very vulnerable. I hate being vulnerable. I don’t know why I don’t seek help from more people more often. I surround myself with smart people, why not connect with them? Why do I assume that people will scorn me for my ignorance? Why do I think it is ignorance to not know everything? I picture people surrounding me like hyenas and laughing at me when I reveal a weakness, and then going in for the kill. It is such an aggressive image for such a simple situation. Why do I limit my life and my knowledge of the world, out of insane fear?
I didn’t do that today. And I can’t take responsibility for that action. Before my stroke, I can’t remember taking even a small risk like that. I did it sometimes with people I felt close too. And on the very rare occasion that their reaction even hinted at a less than loving response, or if I imagined a hostile one, I vehemently and irrevocably banned that person from my queen-dom, forever. Well I didn’t actually cease all communication with most of them. I just never again was vulnerable, admitting a deficit or weakness to them. I built a very tall, solid wall around myself. I was isolated and got hurt less. But I was also lonely and hopeless.
My stroke is a great teacher, but only since I accepted a right sized place in the world. I don’t have all the answers. No one has all the answers. The answers aren’t always important, but the people in my life are. I can accept help, once the pain is great enough for this stubborn a** to smarten up. My stroke and the conditions I live with make me vulnerable in ways I never was before and ways that I often try to ignore now. Ignore this side of me long enough, and strange things happen. A miracle occurs. I open my mouth, like I did today and the world opens up. My life and I, am changed for the better.
That lesson at work was followed by one at home. This time the teachers are my yard, son, husband and Gus. This lesson is part of an ongoing unit that will last until fall, and beyond. Every year, I plant some sort of garden. I pick out what plants I would like to try. I decide where would be a good place in the yard for the various plants to grow. I seek some input from the family on colors of flowers or types of herbs to grow. I ask Tim to help with the heavy work of soil preparation, and he always does. I plant. I water, but not enough. I weed, but not very diligently. And I reap the results of my method.
Mind you, my plan was not to echo a fascist regime in my gardening style. I did the best I could with what I knew, with the stories I told myself. I didn’t want to bother my family too much with the work of a garden that might not interest them. I didn’t want to do too much in the yard and step on the toes of what my family envisioned for their yard. I didn’t want to try any plants that I wasn’t really familiar with, because I didn’t know how to grow them. This limited my choices to marigolds and cucumbers. I did try pumpkins last summer, but as I had no idea how much water and sun they need and our backyard resembled a war zone with insane amounts of work being done on the back of the house, I didn’t harvest a simple pumplet, let alone the Great Pumpkin I had imagined in my mind.
This method limited every aspect of my gardening experience. I gardened alone. I dreaded doing much work in the garden. I didn’t end up spending much time in my garden. And the results were not so impressive from my garden. There was the year that we grew carrots. I mean, we all pitched in with those plants and sure enough, we all ate a lot of totally yummy, albeit warty to look at, carrots. There was the difference. We did it together.
In the greyness of late winter this year, when I started dreaming of digging in brown soil and growing green “fings.” I thought of our carrots. I asked Tim if we should grow carrots again. He said that sounded good. A week went by and I headed outside and cut the raspberry bushes, hedges more like, back to get lots of new growth. This time “the mens” came outside too. They collected sticks that had fallen and raked the leaves up. Sweaty and smiling, we all 3 stood and admired our yard. A trip to Wessy and making the daily rounds with my aunt, made clear to me how much change happens every day in a garden. In spring, new life abounds. So I started making rounds with Gus everyday and was rewarded with daily miracles of hearty plants that came up another year and little buds in new spots from plants that had spread out to new places in the yard. I felt a part of the yard and reported the findings, daily to the mens. A week later, I saw a post on Facebook about things that you could build that would maximize vertical space in a garden. Our yard has pockets of good sun. But they are isolated and need to be used wisely. Planting UP might be the way.
I sent the post to Tim and he looked at it with Jason. We all liked the Teepee idea. It looked like Jason could actually hang out inside it, if you built it tall enough. He liked that idea. I loved that the teepee was good for climbing veggies, like cucumbers that Gramma Harriet used to grow and I would pick and we would eat right out of the ground, together.
Peas are a family favorite to grow too. Since I was a kid, the peas are planted by adults and harvested by kids when adults are inside the house doing adult things. No Scanlon/Henry peas ever make it inside to a cooking pot. They are an outdoor treat for thems that have the initiative to go get ‘em. And beans are climbers and some kind of squash too.
Tim and I Googled how to actually make a teepee. We watched the video separately and together, over and over. It seemed manageable to assemble and not expensive. We talked over supper about using the pumpkin patch area, but rounding it out from a rectangle to an oval. We talked about not replacing the butterfly bushes near the pumpkin patch. They had done well one year and not so much since. I was thinking of a wisteria. It is a very elegant plant and reminds me of my Dad’s cottage in England. Thank God I told my gardening neighbor about this thought. He told me that wisteria take 8 years minimum, to mature enough to flower. I shook my head right away and abandoned that idea. I am nowhere near patient enough to wait that long. Hmmm. What to put where the butterfly bushes?
A few weeks, late on a Sunday afternoon, the three of us went to the lumber store right before it closed. We picked out 8 pieces of thinish, roundish molding and asked for it to be cut to 6 ½ foot lengths. We bought a roll of household cotton twine and headed home. Jason wanted the teepee built right then. Tim tried to build it quickly while I got supper together. We didn’t go with version one. We piled the wood up and put the twine in the shed. The right day would come.
A week ago, Tim and Jason cleared the sod for the new bed. Teamwork. I fiddled and diddled with the teepee. I stood my construction up and we all went around and slowly worked the pieces outward, making a mighty fine teepee. The plants would come soon. We went up the road last Saturday after Jason’s baseball game and bought some “fings” to plant: 4 packs of yellow marigolds, two tall and two small. Marigolds are great in the boxes near the shed, bright and cheerful. They would also work around the pole that we three had sunk in an abandoned butterfly bush hole. For the pole, we bought a big, big clematis vine in deep purple. I picked out a small one, but the chap at the farm said they had bigger, more mature ones for not much more. It would flower this year, for sure. Sold. Supremo Clematis went in that day.
And to grow on our teepee, we got beans, peas, cukes and spaghetti squash. Excellent. Monday, when the mens were at baseball practice, I planted the lot. Gus helped. He wandered and sniffed and found the sunny spots on the dirt to roll in. He didn’t help dig, which is insane because this beagle is quite an accomplished digger. I asked Gus how long he thought it would take the bunny to come for supper? What percentage of the planting would become a bunny snack? It is 5 days post planting and 100% of the plants remain. That is unexpected. Tim remarks on how good the pole with the clematis looks. Mom loves the deep purple color we picked. The vine and the marigolds all around, she can see from her bedroom window. Gus and I check the plants every day. We grilled hot dogs this week, in the yard. And Tim fixed the grill without blowing it up, as I imagined. We did homework on the deck and munched on chips and dip. Jason helps me water and checks if the plants are grabbing onto the strings yet. I look forward to this day in our garden and we all dream of the summer with these plants.