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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.

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Strokeaversary: Sweet Pea

Our beloved 14 year old Sweet Pea just died. I’d had my most recent Botox shots to my left calf and arrived from the long back and forth drive to Halifax to find our elderly lady sprawled awkwardly on the bedroom floor by her food dish. When she saw me she stood to walk but kept falling sideways. I picked her up. Her head jerked in spasms every time I tried to get her to eat or drink, even her favourite tuna snack. She seemed to be experiencing terrible dizziness. Sara rushed home.We arranged an emergency vet, spent hours holding her, and only late that evening, after blood tests and consults, accepted the fact there was nothing we could do to help her. The vet believed Sweet Pea, who has been noticeably frailer recently, may have had a brain tumour (many from her semi-feral colony in Montreal had died from cancerous tumours) and that it had reached her optic nerves.

There’ve been lots of tears since. The day after she died, a letter arrived for Sara from a Montreal cat adopter who just lost her own kitty. She had sent some left-over anti-nausea meds to Sara (they’re expensive and were needed for every long car trip).

When Sara opened the letter, it simply said “Hope these help Sweet Pea in her travels.” “I hope so too,” Sara sobbed, and a fresh round of tears for us both followed.

Sweet Pea

Grief is natural. It’s not to be rushed. Sweet Pea was Sara’s first adoptee. Somehow, despite being the runt, she was the last of the brood to survive and to still be with us. She travelled with Sara back and forth across the Atlantic. When we moved to Dublin we crossed the Irish Sea by ferry – just for her. She was such a trooper. She was annoyingly anal about her schedule, perfectly indignant when food was late, completely trusting of strangers, very patient under duress, a true companion, and very, very smart. She loved being lightly vacuumed.

Also in the mail the day after her passing was an author’s copy of “Touchstone,” the United Church of Canada’s theological journal. The issue title? “Death.” I’d forgotten that I’d written an article on “Death and Mortality From a Biblical Perspective” for them. And here it was.

Given that Sweet Pea’s condition at first looked to me a bit like a stroke, and that journal article, I’ve been thinking about death, aging, frailty, grief, relationships, and all of our shared weaknesses these last few days.

Snow

During our winter break, Sara and I were at the Atlantic Lutheran Leader’s Retreat. Bishop Carla Blakley and the Eastern Synod staff asked how my recovery is going. I told them what I’m telling you: I can’t believe how supported I’ve been. I’m still so appreciative of the support of Sara, of the medical teams in Antigonish and Halifax, and of many of you, as I fight my way back from my stroke. It’s a communion of all kinds of “saints,” and I’ve been blessed by it.

I continue to measure my progress by small victories. For the first time since the stroke I can now straighten my fingers enough to put on just about any gloves (you’d be surprised how hard that’s been). After one of our seemingly endless snowstorms I backed up the car and realised I wasn’t using the camera but doing it the old-fashioned way: steering with my left hand, and looking over my shoulder with my (good) right hand behind the passenger seat. Like everyone else in Nova Scotia I’ve done a LOT of shovelling lately, using both hands. On one sunny day last week last week Sara and I had a hot chocolate date in the snow. I’m able to sit down and get back up from those more difficult places much more easily. My typing is faster and my guitar playing just slightly smoother every week.

Although I walked 1.5 km recently, my left foot was dragging by the end – a hard thing for someone who identified as a “walker” for so many years. But I’m able to dress myself, put on a belt, and dry off after a shower with both hands now. I can even tie a knot again, if there’s no rush and it doesn’t have to be too tight. In so many ways I feel like a toddler who’s had to learn how to move through the world.

Sauna

As I mentioned in a recent blog-post, when I had a brief but serious cancer scare not long ago, I decided life is short, and I’d buy a Finnish sauna kit. Ever since my wonderful years with the Finns of Montreal’s St Michael’s church, saunas have been in my blood – and my dreams. I know it’s an incredible privilege to have retirement savings, and to spend some of them on such a luxury. But when I get cold my entire left side seizes up, making walking difficult. And the sauna sure makes my left side – AND the rest of me – feel good!

Serendipity

We were thinking Sweet Pea would be our last cat. But then, as I’ve mentioned on this blog, a big feral male showed up near our door in the coldest and snowiest of days last winter. He wouldn’t go near humans, but we’d wake up sometimes after VERY cold nights to find him on a chair on our deck, in the snow. He’d been terribly injured in one front paw somehow, and was un-neutered. Eventually, Sara managed to trap him. But when she opened the cage on his return from the vet, instead of springing away as expected, he turned and came into the house! Theodore is an 18-pound tabby. He’s incredibly affectionate and intelligent, even though (unlike Sweet Pea), he’s scared of any humans but us so far.

Back in his wild days, Sara named him Theodore. Both Sara and I have taught Greek. But until Sweet Pea’s passing just now, somehow we didn’t remember that Theodore also means “gift of God.”