Week 6 Strokeaversary: setbacks & slowdowns

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How prescient and thoughtful George‘s card was this week! One of the dangers of making daily improvements in my post-stroke recovery is expecting that trend to continue without fault. At the outset, the health care team said there would be days of setback and slowdown. “It’s not a uniform progression,” they warned. “Don’t be discouraged when some days you find you can’t do as much, or your condition even seems to regress.”

That’s what happened this last week. “You’re dragging your foot and swinging out with your hip more,” observed Lee as she watched me with the walker Monday. Eventually she said “Just take a break. You must be tired.” My speech slurred perceptibly, especially Sunday through Wednesday, as much as I tried to mindfully keep my “s”s tight. For the first time, there was no progress in my hand – despite Ria’s, Lena’s, and Lori’s best efforts. Between physio sessions I was exhausted. I’d crawl back into bed for naps.

I asked the staff whether a change I was starting to notice in my taste buds could be stroke related. Some said yes, maybe so. But when Sara picked me up for a supper at home, and heard that I hadn’t been able to taste the maple syrup on my french toast and didn’t enjoy a piece of home-made fudge, she left her N95 respirator on for the car ride home, then pulled out the last covid test from the stash we’d built up (when they were plentifully provided), and said: here, take this.

I was positive. Sara said, “I knew it.” She still made the Mexican Bean Stew she’d planned, but we ate in separate rooms. When we got back, I told the ward. For 24 hours they didn’t quite seem to know what to do with me and said to “wait for Infectious to get here in the morning.” They administered a test that had to be sent away for analysis. They didn’t bother to protect my room-mate, explaining “he’s already been exposed at this point.” But ironically, just as I started feeling better, the infectious disease control measures locked in full force. By Wed night I was isolated to my part of the room, and staff added gowns, gloves, and face shields to their usual haphazard masks, when they checked my vitals or brought my pills. For the rest of the week members of the physio team who were not themselves sick faithfully led me through my exercises in the few square feet of room where I could still move. Things like showers and fresh bedding were put on hold. For a few days it was just me, my laptop, my book, and the window.

Sara suggested I take advantage of my isolation to write poetry, a practise I got into in Montreal, England, and Ireland. I was anxious to try this, and a bit anxious about it. The side of my brain damaged by the stroke is the side typically used for imaginative, connective thinking – precisely the kind of conceptualization required to write poetry and fiction. In my isolation room, I worked out a poem about looking out my window and sent it to Sara. “It made me cry,” she wrote back immediately. Knowing I’d been worried, she added, “It’s very much your pre-stroke style. That part of your creativity hasn’t changed.” Encouraged, I wrote the first draft of another poem, about a crow. “Even better,” she responded. “Keep on.”

By week’s end my slurred speech was closer to normal, my energy was good again and I was making progress every day with my exercises. But hospital protocols require 8 days from first confirmed symptoms, and so they have me on isolation until this Tuesday Oct 29. The physios and doctor suggested that if I could, I should go home for the entire weekend. “You’ll get more physio there than here, at the moment,” Lori told me. Sara, who ALWAYS masks in shared spaces out of concern for vulnerable loved ones, had also become briefly unwell – a “surreal fatigue” she said, and a few coughs and sniffles, although she tested negative. I was six days post-first-symptoms. Sara came and picked me up. I was able to shower both days (shower chair on loan from the Red Cross) and fall asleep in my own bed, where I’ve had my best sleeps in weeks.

Sat morning I was able to make bread-machine bread, make coffee and tea, and cook rice (although re-doing the twist tie on the rice with one hand defeated me). Saturday and Sunday I did my leg lifts and toe-points on our deck in the sun, so much better than the thin slice of my room between isolation refuse bins. Tonight (Sun Oct 27) I’ll head back to the hospital and two more days of isolation.

I can now hold myself up on my left elbow, and bend down to pick up items (with my right hand) that have fallen on the floor. My left hand remains barely responsive. But here at home I’ve used it to squeeze toothpaste and hold a jar while I twist off the lid, so that’s something. I had a very vivid dream this week in which I was going into a musty wing of a large building and turning on the lights, trying to find the thermostats, etc. In my dream I knew that I used to live there and had to make it habitable again. I think the dream was about my brain reactivating (re-inhabiting) my left arm and hand.

The more I’m learning about strokes, the more fortunate I feel that mine did not take my speech, hearing, or cognition, or in any other way cut me off from my loved ones. Apparently 4 of 5 strokes affect these faculties in some minor or major way. I’m still recognizably my old self – to my own mind, to Sara and my kids, and through this writing, to you. I’ve joined the Heart and Stroke Foundation. I finished Norman Doidge’s brain plasticity book and I’m half-way through “My Stroke of Insight: a brain scientist’s personal journey” by Jill Bolte Taylor. I’m grateful that apparently only my mobility was affected by whatever deadened the 3-cm sphere on my right brain hemisphere. I feel a responsibility to work hard on my recovery because of that relative good fortune.

This week I’m thankful for the lasagna dropped off for us by the Penners from our Department of Religious Studies at StFX, for the meal coupons given us by our Dean, Erin Morton, for Joanne, our administrator, who thought to send me a ‘grabber’ for those pesky charging cords, for visits from Lewis McKinnon, Robert Kennedy, and Rev. Peter Smith, for the magnificent flowers from my adoptive Finnish family at St Michael’s Church, Montreal, for James McGrath’s gift of a zoom lecture to my class at FX (check out James’ fascinating books here), for tea and a book of poems about walking from our former colleagues at the University of Nottingham, for prayer candles lit at Lutheran Church of the Cross in Victoria, Quebec City, and in so many other places as well, including by the Apostolic Johannite Church (the Gnostics). “Has anyone ever been so love-bombed?” teased my friend and fellow writer Ellie. I don’t know. But I know I feel that support in every part of me every time I try to extend those left-hand fingers. One of these days!

Last Monday, when I was feeling poorly, Sara took me out to St. Martha’s grotto garden to feel the sun and see the leaves. I felt a bit discouraged just then.

I played Gabrielle Papillon’s song “Go into the Night” for Sara in that garden, to tell her how absolutely loved and supported I feel by her, and how thankful I am. We both broke down and had a cry as the cars passed at end of shift. It’s a beautiful song. I’ll leave it here for you, too, in closing, in case it speaks to any challenges you’re facing. Not all weeks are easy, stroke or not.