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country life stroke-recovery Uncategorized

My Two Year Strokeaversary

ambulance trip for heart surgery

I can’t believe how fortunate I am to be where I am this on this anniversary, slowly typing these words with both hands (!), sitting at our kitchen table.

How It Started

Two years ago, a stroke caused the paralysis of the left side of my body and began a four-month sojourn at St Martha’s Regional Hospital, Antigonish. In those early dark days, as a roughly two-centimeter sphere inside my brain died and a larger area of cerebellum around it went into temporary shock, it looked like I might lose my ability to eat, talk, and even swallow. To hear and to properly understand others. My speech slurred and for a few days I was forbidden solid food. You can read my early thoughts, during those first moments, here.

I’m thankful, every day, that the worst didn’t happen. It happens to others. I was fortunate.

I’m also incredibly thankful I live in a place with a public health-care system. Sara and I did not go bankrupt over my stroke. I was not rushed out of care prematurely. Sure, things weren’t always perfect. Mistakes were made, and not all care workers are equally competent. In any system. But I was looked after for four months, then followed up for a long time, by hard-working professionals who cared deeply about my recovery. Nova Scotia’s creeping (and very intentional) health-care privatization is a threat to outcomes like mine. In our lives, in the lives of neighbours and loved ones, we will all face some of what I did in those months. We need to stand up for patients over profits.

Anyway, after it was clear I’d survived the stroke, thinking and speaking intact, other questions started swirling. Not, ever, from Sara, who just kept showing up day after day that fall, advocating for me, writing notes as doctors and physios came in and out, never questioning this new phase in the autumn schedule, like it was just another work contract that had come up unexpectedly. Not really from me, either, so single-minded on recovery. But from the extremely helpful, caring, and busy health professionals just trying to do their jobs and facilitate my adaptation to a new reality they’d seen many times before: how will you use the bathroom? Do you have stairs at home? We’ll get you a spike to hold vegetables while you cut, a post to help you stand up from the toilet. A shower chair. A walker to move from room to room. And, by the way, you’ve lost your license.

Two days after triumphantly leading a group of walkers on a 25-km jaunt from Pomquet to St Ninian’s Cathedral along roads I optimistically called “The Nova Scotia Ninian Way,” I couldn’t even to get out of my hospital bed without a two-person lift.

I’d been plucked from my comfortable, happy life and set at the base of a high mountain. No one ever told me (and Sara) we had to climb it. We just did. People have told me we were brave. Perhaps that’s true. I certainly never felt it.

In an instant, my world had been reduced to chrome bed rails, thin sheets over rubberized mattress covers, a call button that was often out of reach, IVs, meds, blood tests, and a body whose left half seemed permanently asleep. My usual varied routine had been exchanged for three hospital meals, two physio sessions a day, one quick physician visit, if I was fortunate, and hours and hours in a wheelchair by a window, left hand lifeless, furiously writing notes with my right to keep my brain active and record what life had become.

Eventually I realized I had a choice: to apply myself and do my exercises every day – or not. I’m thankful my determination had clicked in. I had flowers and cards almost daily, thanks to a community (many of you!) that kept me going. Sara kept bringing in books, quilts, and art for my room. She arranged things to make me comfortable and, as I came to realize, as a subtle way of reinforcing my individuality and worth to an institution and in the face of overworked systems that sometimes reduce real people to “bed 355B.”

I was admitted September 17th, 2024, discharged Dec 20th. Just in time for Christmas.

First steps, post stroke

How It’s Going

It’s going well! Two years on and I’m not quite back to my old self. Since the aging process stops for no one, maybe that “old self” is forever in the rear-view mirror. But it’s amazing what I can do.

I use no mobility or bathroom/shower aids, and I passed my recertification on what turned out to be the 50th anniversary of my teenaged driver’s test. I have a handicapped parking sticker I enjoy, although I’ve started to feel a bit guilty. I sleep through the night in my own bed. I’ve had heart surgery to repair the hole in my upper chamber where the clot may have slipped through (thank you again, public health care!). I climb stairs using a handrail and although I have a limp I’ve walked up to two kilometres at a go, aiming at more. I can easily crouch to fetch a saucepan from the cupboard. I can hammer a nail, use a spade in the garden, make jelly, and even climb a ladder to hammer a T-post for our saplings needing support. If I’m careful.

This summer I dared to travel by myself to a conference in Quebec City , and even managed the steep hill to the Old City (but a shout out to David Duncan and Colleen O’Toole for all the rides!). Just recently I started using my left-side pockets again. I often stop something I’m about to do with my right hand and switch to my left: unscrewing the small plastic milk lid, fetching a jar from the fridge – or if I’m brave – from a high shelf. I can tie my shoes again – although annoyingly, I threw away my old laces back when I couldn’t.

But especially in the mornings and later evenings, sometimes I feel have a robot arm…everything’s so disconnected and jerky. Nonetheless, my guitar playing gets better weekly, helped when I remember that actually, I was never that good!

I do have more “guitar face.” Guitar face is just the continuation, in a more subtle form, of the sympathetic body movements I’ve had to make ever since the resurrection of my left side. The first time I was able to very slightly twitch my left thumb, it was only after minutes of vigorously pumping my right leg up and down, straining my face, and clenching my stomach as if doing sit-ups. That ever-so-slight movement left me exhausted.  I remember telling hospital staff I couldn’t show anyone else my thumb because the rest of me was too tired!

Now, in the mornings, my left eyelid sags. I practise raising the droopy offender in front of a mirror, hoping I won’t look too unbalanced for the 8:30 am class I teach at Saint Francis Xavier University.

That left eye is the sign that my entire left side was hit by the stroke – not just my hands and feet. Occasionally, when tired or cold, I still stumble over multi-syllabic words that never would have tripped me before. And my hearing! An “F” and an “S,” or a “T” and a “P” sound so similar I often can’t distinguish them. It’s made for some funny misunderstandings.

Maybe it’s because my arm and hand have improved so much, this summer I’ve been focussed more on trying to improve my walking.

Comorbidity is defined as a “medical condition that exists alongside a primary medical issue and affects your health.”  I’ve been so focussed on getting my left leg going I didn’t realize that in the meantime I’d developed a kind of arthritis – it’s turned that side’s big toe inward into a “claw appendage.” That’s one reason my gait hasn’t improved more (try walking while avoiding pushing off from one of your big toes. It’s almost impossible).

So, this summer I bought two different straightening devices, and now I consciously spread my toes whenever I remember. The results are encouraging. I also finally got a foot brace to keep me from snagging my left shoe so much. I’m hoping it will help for longer walks and give my brain a break from having to remember to lift that foot every step.

Everything After Everything Falls Apart

In two weeks, I’m the guest speaker for a gathering of Nova Scotia United Church clergy. I asked them: “what would you like? I could lead a retreat on biblical studies, on pilgrimage, on Leonard Cohen, on settler-Indigenous relations…” They replied: “would you be willing to talk about your stroke, and your life since?”

I’m not completely sure what I’ll say. But I’ll start at least, by saying that when everything – absolutely everything – falls apart, it may not feel like it, but it can be a gift. For ourselves. And for empathizing with others.

Two years ago, I was caught briefly between life and death, and I got life. Not because I deserved it. That’s just what happened. For a few critical hours I hung on a pendulum between silence, isolation, and pablum on one side, and full, rich communication on the other. By some miracle of timing, clot placement, and grace I came through the tunnel still able to process thoughts and speak words others could understand. What a gift.

It’s no surprise that every day feels like a privilege. Because it is. That’s true for everyone, of course. All the time. Life is the miracle we spend most of our lives too dulled to notice. But to feel the brush of death’s passing and this time at least, not be taken? Wow. Mostly, I wake up every day remembering that. Every berry I pick shines with more colour, every bite of apple crisp or cheddar cheese or roast chicken tastes more luscious. Sara and I already tended toward gratefulness: my stroke has increased all those Pollyanna attitudes.

I’ve been permanently wounded, but my ongoing and slight disabilities are reminders I’m still here. Every time my toe catches, or my fingers don’t quite work, or my hip lifts, or I misunderstand a word, it’s like fingering a prayer bead. Maybe I’ll say that to the group at the retreat.

Gratefulness isn’t just personal – it’s meant to be social. It’s religious. It’s creative. And it’d better be political. It can, at its best, spill into everything. Our solidarity and our empathy with others are ways of expressing thankfulness: thankfulness for still being here, still being loved, still loving, even after everything falls apart.

Categories
stroke-recovery

Sara Stedy: Week 11 Strokeaversary

This device is called a “Sara Stedy.” It’s a cross between a wheelchair and a strap-in walker. Just after my stroke 11 weeks ago, I couldn’t stand. I was a “two-person transfer.” Two nurses would use a Sara Stedy to get me up from bed so they could wheel me to the toilet. I remember how safe I felt as they carried me.

Bounce Forward

Now I’m stopping to take my own photos of Sara Stedys as I pass them with my walker on the way to the physio gym. This week, trying to find me new challenges, the physios took me to the hospital’s concrete stairwells and I went up and down with supervision. When I’m home for weekends, I often don’t bother with the walker or cane.

There were some more firsts this week – mostly subtle changes. I’m a bit surer on my feet. Using my right hand to place my fingers, my left hand stayed put long enough to make an E and a G chord on my nylon-string guitar. At home, I ventured out by myself for the first time to take some photos. Instead of ignoring my left hand, I now find myself reaching with it to flip a switch or turn on a tap. (Often I can’t do the task … but it’s worth noting that my brain is starting to think I might be able to!) I had my first full acupuncture session with a local specialist. Lori and Lee and my physio team made this “shoulder and arm” week. By the end of it I could lift my left arm in the air without help, while lying on my back. Karen, one of my supportive nurses, surprised me by saying “shake” with her left hand and I (sort of) did it.

I looked back at my journal from right after the first, smaller, stroke. I’m struck by how brief the notes are (probably because Sara was jotting them, exhausted). I notice what they don’t say: how my condition kept deteriorating, how deeply frightened I was that in my downward spiral, I’d soon wake unable to speak, or with a personality change, or in a coma.

In less than two weeks, I’ll be released back into the wild and into the care of my own Sara Stedy. I feel safe with her, too.

I know this doesn’t mean I’m “recovered.” A familiar refrain across stroke memoirs is that one does not go back to one’s “old self.”

“In the first days after the stroke, I had naively imagined that I would bounce back to being the person I had been in a few months. Meyerson’s book [Identity Theft: Rediscovering Ourselves After Stroke by Debra E. Meyerson and Danny Zuckerman] helped me realize that in life one can’t bounce back; one has to bounce forward.”

~Mukul Pandya, Stroke Onward

Reading the journal now, my overwhelming feeling is gratitude. My stroke wasn’t worse. I have a public health care system. I am surrounded with resources: personal, familial, emotional, financial, and community (folks like you) that collaborate to support my recovery.

Human Resources

I’m usually the pilgrim on the move, but for now I’m the stationary destination! Some of this week’s pilgrims included my colleague Gerjan (right, with Carly and their son Theo), who despite his heavy teaching load and precarious position, has visited me several times.

Or Tom Curry (above), the hospital’s music therapist and a local performer. I’m not sure our ward is even his responsibility. But after he heard I asked about music, Tom faithfully drops by. He asks what music I know and like, tests what I can shake the percussion egg to, and keeps encouraging me. “Ain’t No Sunshine”, “Out on the Mira” “Hit the Road, Jack.” He knows them all.

Or John. John is a north star for the entire ward. Unflappable. Always cheerful. Extremely hard-working… Checking by name on every patient, just in case anyone needs help. As Sara was taking me home this weekend, John was dashing past for an emergency, but took the time to call over his shoulder, “Hey, Sara! Can you believe this guy? Look at him go! So proud of you, Matt, so proud of you.” Once John asked if he could do anything for me, and I asked for help with a shower. “Sure, Matt,” he said, and dropped everything to assist. It wasn’t until halfway through the shower that he admitted, “this isn’t normally part of my role.” Above and beyond.

Like Phyllis. Phyllis didn’t want to take a photo. “The School of Nursing doesn’t like it.” She’s an LPN with a sunshiny face who always says hi as though to a dear old friend, lifting the mood of everyone she treats. A month ago she spent her lunch break trimming my toenails. She wasn’t my nurse this week. But she dropped by, surprising me Friday just before my weekend pass. “How are your feet?” she asked, then proceeded to kneel to take a look (my ankles are swelling from the meds). “Oh, the skin is dry! Would you mind if I put some cream on them?”

Would I mind?? What a gift! As she was walking out for her next patient she called out: “I just love feet.” And me? I just love Phyllis.

Then there’s fellow writer, academic, and walker Ken Wilson who’s been faithfully sending newsy emails nearly daily since the moment Sara announced the stroke on social media, saying it would cheer me to hear from “the outside world.” This is despite Ken’s own mad teaching, writing/editing, and grading crunch! A few days after he read last week’s blog about my trouble with zippers, these showed up on our doorstep. Thank you, Ken!

Reaping Past Writing’s Rewards

Finally, it was a week of incredible affirmation in my life as an author and academic. This feels especially gratifying during a period when I’m struggling to type with one hand.

  1. Rubbing Shortlisted Shoulders with Naomi Klein

I found out I didn’t win the Vine $10,000 non-fiction prize for Prophets of Love: the Unlikely Kinship of Leonard Cohen and the Apostle Paul. But the book was one of just three short-listed out of 60, and the winner was Naomi Klein, for Doppelganger. Pretty amazing company!

    It’s not 10 grand, but it’s certainly a prize to be considered in such company, and I will definitely encourage McGill-Queen’s to use the jury’s blurb in their marketing from now on!

    2. Rave Review in Miramichi Reader

    I was also floored when a Google alert informed me that The Good Walk received a spectacularly positive review by Michel Bryson in The Miramichi Reader.

    3. Winnipeg Free Press Most Notable Books 2024

    As if that wasn’t enough, The Good Walk also made the year-end list in The Winnipeg Free Press’s list of 2024’s most notable non-fiction. What a gift!

    4. The Author Journey Weekly Livestream

    I hesitated to say yes to appear this coming Tuesday with Anne Louise O’Connell on her weekly live videocast, “The Author Journey” to talk about my writing process. My speech still slurs when I’m tired. But Sara said, “that will all just be part of your story.” It’d be great to have you cheering me on there if you’re interested! Tuesday, Dec 10 2024, 4pm Atlantic (3pm Eastern) on their YouTube channel.

    5. Copyedits and Cover Reveal: “Someone Else’s Saint”

    To top off this flurry of reminders that writing done in the past is still at work in the present, Pottersfield Press just sent me the copyedits of Someone Else’s Saint: How a Scottish Pilgrimage Led to Nova Scotia (coming out April 2025). I had submitted it the night I first arrived in the emergency room, following the first (smaller) stroke. Sara teases me that I may be one of a very small number of people on the planet whose first task upon arriving at the hospital by ambulance is to submit a book manuscript.

    I suppose this is as good a time as any for a “cover reveal”!

    For what it’s worth, this is the story of the Nova Scotia Ninian Way pilgrimage that immediately preceded the stroke! Saint Ninian may have a sense of humour.