My Stroke: Part 6: Taking a Stand

Gracefully, respectfully, facing conflict
Deep inside myself, but
Here confined, losing control
Of what I could not change
Gracefully, respectfully, I ask you –
Please don’t worry; not for me
Don’t turn your back, don’t turn away

VNV Nation – ‘Epicentre’


The following morning, I awoke with what may have been the worst pain I’d ever felt; the blood-draw alarm clock notwithstanding, my head pounded with a cacophony of intense hurt unlike anything I’d felt since the regimen of painkillers had begun with the foregone IV drips. The phlebotomist was kind enough to send my nurse in with some pills to help the misery, but there was certainly no way I’d be getting back to sleep; even so, I laid in bed, letting the medicine do its work until it was time for breakfast. More pills with my food, a shot in the gut, and soon I was ready for another round of therapies punctuated by resting time, pill deliveries, and some paperwork, visitations, and so on.

At some point within these first few days, through the combined efforts of Stephanie (my OT) and sheer force of will, I did start to show progress. While the left side of me remained mostly useless and largely numb, some sensation was returning; so, too, was some gross motor skill. I remember vividly when I began to be able to raise my arm again, half consciously and half from my body’s own efforts to restore itself; I remember it vividly because, of course, I was eager to “show off” my recovery as I was able. My mom came to visit, and I remember saying, “Look what I can do,” proudly lifting my arm up from my bed and promptly lowering my hand directly into my nearby glass of water, prompting some genuine laughter and lightness as I sheepishly admitted that, while the progress was wonderful, there was quite some way to go yet.

At this point, too, a schedule had been set up independent of myself, between my wife, mother, and sister, cycling through who would care for my young son on any given day; two nights a week (at my demanding), my wife would be home with him, and the remaining five were divided between the other family members. He also visited me every day, sometimes for only a few minutes, sometimes for longer — depending on his behaviour, my therapy schedules, and what else there was to be done on any given day (he was kept busy when not there, to help him through seeing his dad in such a state).

It was on a day that he was with mommy that I managed to achieve my second fall of the experience; absent-mindedly neglecting my seatbelt (which, admittedly, I did with some regularity throughout this experience), it became entangled with one of the wheels of my chair, sending the whole thing — and, of course, myself — to the floor. It didn’t take long for me to be helped up, given a check-over, a set of vitals, and a new friend strapped to the seat and back of my chair; a pressure-sensitive alarm that would go off if, while active, sensed my absence from the chair. Sensors were added, also, to my bed; the alarm unit would be transferred when I was, so that if I fell from either place, the nurses would be immediately aware. While this wouldn’t come up again, really, in any such scenario, it would provide some moments of amusement along the way once I became more mobile.

On the topic of mobility, my physical therapy – perhaps bolstered by the gross-motor progress on the side of occupational – turned away from simple stretching and to more intense work; I was introduced to a device called the ‘Encore’. This consisted of a large machine with a pair of handles, a lifting mechanism, and some lock-in-place wheels. Given the lack of control over my left hand, that was strapped to one handle with an Ace bandage, while I gripped the other on my own. The machine would raise me up slowly from a seated position, my legs helping as much as they could, and, for the first time since the hospital staff told me I couldn’t stand to go to the restroom while wheeling me towards the first CT scans of my ordeal, I was standing — or, at least, upright while supported by the Encore and by Lisa. I think (but am not entirely certain) that the first time I was lifted this way brought tears to my eyes. Whether it did or not is mostly irrelevant; I can remember only a few more milestones along the way that felt so truly momentous and inspiring.

While she was out and about, my wife also, with some help from my contacting my boss, took my laptop in to my office and had the password reset to something I’d be able to remember (and had written down); with that done, I was able to set the thing on a spare rolling table at a good height for use from my chair; this, too, would become an important part of my daily routine, as well as an avenue of therapy once my arm and hand started listening to my commands. To that end, Stephanie continued to focus mostly on my gross motor control; my left arm had taken to ‘drifting’ — that is, if I didn’t focus on it, it would raise uselessly into the air, floating my hand somewhere around head level. It would do this as I wheeled around the halls, ate meals, or did nearly anything that required I exert myself in any way that didn’t involve that arm.

It was this drifting that would, despite the annoyance, also occasionally provide some comedic relief. Some mornings would involve a before-breakfast OT session, typically focusing on dressing, brushing teeth, and so forth; I think it was the first of these early therapies that, as Stephanie was helping me re-learn how to put on a shirt, my hand drifted – not slowly, as it often did, but with some force – and delivered a solid backhand slap to her face; I remember it was surprising, more than anything, for both of us, and I remember that in my sessions later that day, this repeated no less than twice more. Thankfully, she maintained a good humor about it, and quickly learned that there were times not to be quite so near me as I worked. With the continued help of the electro-stim device, soon, I was learning to grasp with my left hand and, with some measure of difficulty, actually move it where I wanted it to go.

Settling in to the daily routine, I developed some habits for how to go about – and, more specifically, begin – my day. Every morning, I’d wake with the 6am blood-draw; shortly after, I’d have vitals taken and, if the nurse was willing (as most were, but I met some resistance now and again), I’d get up into my chair, have a cup of coffee, and peruse the internet a bit while listening to music; the music would depend largely on whether my wife was there or not; she never woke that early with me, and could sleep through nearly anything, but I’d keep things quiet regardless. I’d go and check the schedule for the day before breakfast and so on. In lulls between therapies, when I wasn’t tired enough to return to bed, I’d play some mostly-mindless internet-based games to pass the time, and after therapies for the day were done (and visitors, who came daily, had left), my wife and I would settle into my bed, using the laptop to catch up on our TV shows and watch movies until around 10pm (or later, on weekends, when there’d be no therapy). Overall, at this point, things were relatively routine and the days would soon begin to blend together as they passed. Still far from recovered, but establishing new progress markers frequently, life in the rehab center settled in to a mostly-comfortable pattern, and I became quite content with it.

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My Stroke: Part 7: True Progress

I never thought I’d go this far
Without a star to cross the seas
So far from shores I’d left behind
Still far from shores I’ve yet to reach
Try to find the strength I need
To calm the doubts in my beliefs
With the will – I know my heart won’t break
If I have strength, then I’ve belief
If I’ve love, my heart still beats
Here under stars so far from home

VNV Nation – ‘Homeward’


It’s been hard to find the time and motivation to keep up with my story; admittedly, part of this is because, at this point, the story truly begins to blend into intermittent bits here and there, an incoherent mish-mash of events spaced throughout routines and daily goings-on; the leaps and bounds of initial progress slowed somewhat after a bit – as such things do – and, really, the generic monotony of living every moment, sleeping and awake, surrounded by the same décor, the same faces, the same weekly schedule of food and daily servings of pills and therapies all became one difficult-to-distinguish sequence. So, rather than try and force a linear narrative where one isn’t clear to me, I’ll turn now to a series of specific memories and particularly distinctive happenings.

I remember that, about a week in to my stay, I was attending my regular cognition-therapy sessions; the puzzles and riddles had become more difficult, and some required no small measure of thought on my part, but it wasn’t long before the therapists were turning regularly to the backs of their books to check my answers against those I was giving. They began asking for my explanations, not because they thought I was jumping to assumptions or striking lucky, but because they could scarce keep up with my performance. And so, roughly one week after arriving, I was discharged from those therapies. and my schedule opened up — they couldn’t, after all, slot more physical therapy for me, so those times became more vacant space for me to do as I would.

I remember, too, waking up one day with an intense pain in my chest. I shrugged it off for a little while of the morning, but eventually, as it didn’t fade, I reported it. I was taken back to my room, given a series of vial-sign checks, and attached to an EKG; the commotion of this became enough to wake my wife (in retrospect, it might have been best to wake her before this – but, hindsight and all that, I guess). So there I was, laid out in bed, surrounded by nurses and other staff, my chest covered in wires as she shook off the grogginess of sleep in a mild panic, demanding to know what was happening. I was given a low dose of nitroglycerine as a precaution, though the EKG showed no abnormalities belying any manner of anything going wrong; some time later, the pain subsided, and I scarce thought of it again through my time there.

One day, I recall, there was something simultaneously terrifying and entirely amusing; this was a day that my headache grew worse than it normally did, so I, for good reason, reported the highest pain level that I’d reported since arriving. Now, when administering pain medications, there are ‘rules’, effectively, laid out by the prescribing doctor. These are individual to the patient, the situation, and the drug; in my case, the guidelines were to give me my customary single pill for any report of pain from 1-7 (on a scale of 10), and a second pill for anything higher. I reported an 8, and was, for the first time, given two pills. Shortly afterward – just long enough, really, for the pills to take effect – I reported to a scheduled session of occupational therapy.

I was wheeled before a small table, and a wooden device put in front of me, consisting of a series of horizontal pegs on either side of a vertical “trunk”, with a number of rings to remove and place on other pegs, moving up the “tree” and back down, and so forth, all using my still-uncoordinated left hand. This task would have been difficult and required intense concentration under even ideal circumstances for me then; adding in the double-dose of painkillers, though, made my arm’s response even more delayed, inexact, and erratic. I fought haphazardly against this infernal wood-block for some ten minutes, growing increasingly frustrated and tired, before finally being forced to admit defeat – I was simply too drained from the medications to accomplish anything useful. This became the first and last time that I gave up on a therapy session, and I returned, sullen and angry, to my room — where I promptly laid down, and had the chance to think about what had happened, and laughed openly at the idea that my doctors had, in effect, gotten me so high that I was unable to work. I learned why I’d been given a second pill, and resolved to bear any pain of that level for the rest of my stay – at least, on any day where I had therapies remaining.

Throughout all of this time, I continued making steps in my recovery – sometimes more literally than others. Having gained some competence in being able to stand, and even practicing doing so on my own, working on doing so without any support (leading to some dismay on the part of the staff, as this would frequently trip my wheelchair’s pressure-sensor alarm, sending them rushing down), I graduated to using the standing-device I’d been training with for mobility. Slowly – so very slowly – the machine would roll forward, under the careful supervision of Lisa; my left hand strapped to its handle, my right gripping tightly onto the other, I’d make small, measured steps — if, really, they can be called that.

My right foot was confident, eager, and more than capable; my left, I had to watch through the entire motion. Often, Lisa would have a student or assistant there to guide my foot, hold my ankle straight, and push against my foot’s natural inclination to turn violently inward. Bandages, electro-stim, therapeutic tape – all of these became parts of the process, using one or two at any given time, pushing my leg to re-learn the motion. Bend the knee. Push forward with the hip. Slowly place the foot back on the ground – careful, now, don’t wan’t the ankle rolling in; it wouldn’t do any good to sprain or break the thing while we’re working on this!

In the meantime, I also gained energy. My sleep schedule normalized to something around 7 hours per night, and I still spent long stretches of the evenings and night having visitors, watching shows or movies on the laptop, playing games, listening to music; I’d still rise each morning with the blood draws, a cup of coffee from the nurse’s station, an hour or so to meander the internet and keep up with my friends’ and family’s lives through social media. I still had days and nights of difficult struggle, waves of hopelessness and depression, but they became fewer and farther between as the routine continued to normalize, and as I continued to press onward in my work, my improvement of myself and my condition. I accepted that I would never be as I was again, but that I could still certainly strive to achieve something better than where I was – and that, by and large, was enough.

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