Occasionally, friends and their children tumble into my deadzone. I only figure this out when it’s too late.
Should we be mid-conversation and a dullness glaze my eyes and my mouth cease its blather, please know I still care about you and our chitchat, but have momentarily darted into my brain cavity to operate the mega-watt searchlight, peering into the dark moldy folds of my mind in search of your name.
I expect silence and the vacancy you encounter in my visage will signal my distress.
You can throw me a lifeline here. It usually just takes a little hint. Like pointing to yourself and saying, “Elizabeth.”
Before your feelings get hurt, remember I am the person who sometimes can’t recall whether I have running water at my house.
And that hole in my head sucks up an amazing a number of random things, glasses, multiplication tables, appointments, past pain, and the day of the week.
I swim in muddy water.
4 1/2 years post stroke, some friends and I were discussing floorplans, we had just toured a home where the front door opened directly into the living room.
In the car, Julie said, “I think a house needs a foyer or entryway of some sort.” I thought about what she’d said and agreed, then experienced the strangest most unsettling moment of complete blankness.
I scratched my embarrassingly empty head, “Does my house have one?”
My buddies giggled.
I asked “How do you get there from my kitchen?” Giggles became nervous titters.
The fleeting image of a large piece of furniture slid through my mind.
I remained blank, blank blank, while Jayne patiently described walking from my kitchen though the dining area to reach my entryway.
I groaned. It took what seemed a very long time to conjure an image of my entryway in my mind. My friends sat uncomfortably silent in the car as I searched the empty hole in my head.
It wasn’t until I walked into my front door that I actually remembered the entryway in my house.
” Oh yeah.”
Of all the impairments brought on by my stroke: dead arm, distorted sense of time, cramped foot and leg and sorry math skills.
Fatigue is the most challenging. Even though I schedule a ritual nap everyday, I have difficulty falling asleep.
I can be staggering with exhaustion but the incessant hamster wheel in my head whirls with centrifugal force.
I’ve worked out ways to compensate for most of my host stroke debilitations. But I can’t figure out how to compensate for zero energy.
I hold things with my feet or knees or whatever wedge I can find; I have a 3 foot wide clock on my living room wall; I walk with a hiking stick on rough on the services; I use the calculator on my phone to check all my mental ciphers.
I took sleeping medication for a long time. But a good eight- hour sleep only lasts until about 2:00 PM when I usually run completely out of juice.
Despite my dragging body and clouded mind, sleep is evasive. I lie there on my comfy bed in my quiet room willing myself to rest. That is about the time every single project or future project I have ever considered begins tapping on my mind’s shoulder. A fretful mind does not rest. This may sound like worrying, but I really don’t worry, I wish. Sometimes my desire for increased independence immobilizes me. Without rest there is limited energy for progress.
I guess the most independent part of me is the hamster in my head. She does whatever. She wants. She wants to run the wheel. Like the Energizer bunny she is unstoppable.
This issue is exponentially worse when I am working on a novel or other piece of writing because then all the fictional characters bring their own hamster wheels and set them up crowding the original hamster. They all race along suggesting plot twists and snappy dialogue to the point that I am more exhausted after a “nap” than before.
Something must be done to get me to the point illustrated below:
Today while zooming around the interior of the largely vacant Frisco Station Mall, I pondered the bounciness of my gait.
Zooming might be an exaggeration, I actually sort of lurch like a person with a wooden leg which is slightly longer than the real one.
The issue: my left knee and ankle don’t bend as much as they ought to when I take a step – the result: a pirate-like lurch.
My left leg is much like Fred Flintstone’s car, a lot of work goes into getting it moving.
Consciously considering each step is tiresome enough without breaking each one down into: hip, knee, ankle, heel, and toe.
Other than maybe humming, I cannot integrate other activity when I walk pretty.
If I try to talk while walking either the conversation or gait suffers.
I could go back to physical therapy to improve my gait but the thought alone exhausts me. I’d be battling muscle-memory from the past five years. I’m confident my gait will improve with time and conscious practice.
Best thing I can do is keep on walking pretty.
When my kids were little I discouraged the use of word can’t, it is after all, a four letter word. Probably the most debilitating word in the English language.
The two words I can’t are responsible for a multitude of maladies. Of course the problem isn’t so much the words, but the attitudes accompanying them. For most fully functional people I can’t is a socially acceptable way to say I don’t want to.
If everyone had the gung- ho attitude of Rosie the riveter, just imagine busy and satisfied we’d all be.
On the other hand, much like a belligerent teenager, when someone tells me I can’t do something, I get right to work proving I absolutely can. There is a difference between things I can’t do and things I shouldn’t do. Sometimes it’s all a matter of word choice. I shouldn’t climb a ladder, but I can. Shh! Don’t tell anyone I know this.
Before my stroke, I believed there were no limits to the things I could do, now I’ve had set my sights a little lower. My balance is still iffy, so I try not to do things that might end up in another face plant to the floor. I don’t really fall, I sort of just tip over. I haven’t tipped over in a very long time and I’d like to keep it that way.
I’ve been lucky in my stroke recovery, I’ve had encouragement from my family, from my therapists and from my friends. In the clichéd words of my mother, “Where there’s a will there’s a way.” Cliché, but true.
I’m not there yet, but I’m closer than I was yesterday.
For the first two years of my post-stroke life, I focused on getting rid of the cane and becoming independently mobile, doing things like carrying a cup of coffee from the kitchen to my chair by the living room window. I could not do that using a cane. Who knew? Working to simply function around the one-handed dealio. I ignored the effects of this new sedentary life on my body.
Year three: anomalies popped up here and there, rounded curves, blown out elastic and overstretched seams. Jiggles commenced. Alarm bells should have been clanging. But I thought, “Five pounds in three years isn’t too bad”. Everyone agreed.
Armed with a hiking stick, I committed to a walking regimen. The exercise and fresh air invigorated me. My weight plateaued. Until…
Year four: Jack retired in February and dinner became a festivity. No more ‘popcorn and a beer’ meals, no more peanut butter and jelly. We cooked healthy meals every evening. Wintertime was upon us. The weather made walking not so much fun. We resorted to mall-walking. Depressing. Unfortunately these unenthusiastic walks did not compensate for the eating.
One year later, I find myself 10 pounds heavier than my hospital release weight. Totally unacceptable.
Needless to say I have a new goal. It’s always something. 🙂
One baby step at a time.