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A Room of One’s Own: strokeaversary week 9

I remember walking from Melrose Scotland, to Holy Island, England, in 2013. After some extremely hot and tiring days, the path took me up a 300-metre ascent to a rocky outcrop. (There was also the small matter of a pasture with bulls, which can happen when you have the “Right of Responsible Access” to pastureland–but that’s another story.) At the top I stopped to catch my breath. Turning to see the view, I realised that there on the distant horizon two valleys over, I could make out the ruins of the Roman fort where I’d stopped on my first morning of pilgrimage, two days before.

That’s how this week feels. The pilgrimage through my stroke is hardly over. But this week I’m seeing how far I’ve come. The parallel bars (below) that not so long ago represented the greatest distance I could possibly shuffle are now where I try balancing while standing on my left leg without support. I have more strength in that leg every day. Without use of my left hand and arm to steady myself, my balance is off. But the distance? No problem.

Although the physios aren’t recommending I do this at home, Lee is making me practise climbing stairs one per foot, like you probably walk them, instead of like a toddler does. This week she had me kicking a soccer ball back and forth with her (I had to hold on to a railing for support, but my left leg did quite well.) For the first time since my stroke I did up the button on a pair of jeans on my own. And I might only be able to “bench press” a featherweight aluminum cane. But the simple fact my left arm can even hang on is a major win. And for the first time this week, I could sometimes push my arm straight ahead on a table. “Cheers” is getting closer!

I’m thankful that the newly-conscripted neurons in my brain that agreed to take over the management of my arm and hand are beginning to sort out their new roles. But I have to be patient: I was so anxious to force my wrist to flex in my room that my hand swelled up like a balloon. I suffered painful cramps until it recovered. Sara suggested, since I am so eager to use all my time working on recovery, that I do it in other ways than “extreme boot camp” (as she put it) and instead take some time each day to be consciously grateful to my brain and my awakening left side. It’s great advice, so I’ve added that to my routine.

Lee, who works mainly with my legs, says she’s amazed at my progress. She hasn’t seen this video of me bringing my own tea to the couch at home on my “weekend pass” today, without cane or walker. I’m not sure what she’d think!

When I was watching this video and bemoaning the lack of fluidity in my step Sara reminded me that just six weeks ago it required two people to hoist me out of bed and get me to the washroom. Looking back brings perspective.

There’s no news yet about “Handcamp”…. they’re waiting on word of whether I’m eligible. But I’m booked in Halifax at the end of the month for a preliminary cardio assessment, a first step to the procedure to close the hole in my heart that may have let a clot pass to the brain.

Having a room to myself is making a world of difference. The previous week, with little rest day or night, I was looking “increasingly frazzled and worn,” in the words of one nurse. Now I sleep well most nights. During the day there’s peace, so I can read, listen to CBC, write (working on some poetry), or do my physio. I also feel more comfortable video-chatting with the kids, and I attended my own class by Zoom this week when Elizabeth Castelli graciously came to talk to them about early Christian ascetic women patrons. Now Sara can even bring her meal and share the whole evening, as her schedule allows. From a place of stress, my hospital room has become an oasis for healing.

I’m thankful to the physio team – Lori, Lee, Ria, Lina, and Abby – who are so patient with me day after day. They were the ones who pushed for a room where I would get the rest my brain needs to recover. The staff know that my dogged motivation comes from being supported by so many of you. One of the orderlies looked at my shelf of cards and said “well, aren’t YOU well-loved!” That comment gave me a physical rush of warmth and comfort.

Several of you recommended recently that I read Daniel Levitin’s just-published “I Heard There Was a Secret Chord: Music as Medicine.” Coincidentally, Levitin and I had an email exchange last spring, when he asked me something about Prophets of Love: The Unlikely Kinship of Leonard Cohen and the Apostle Paul. We exchanged books by mail. So I’m reading Secret Chord now, and feeling the recuperative power of music every day (see below). I should tell Levitin I’ve had a stroke, and how applicable his research is for me.

That healing power of music is definitely helping release some of the frozenness of my left side. I’ll sign off this week’s update with the clip below, more evidence of how far I’ve travelled with this stroke. I love to dance… and in my own room, now I can. Or better, we can. If you know me, you know this has GOT to be good for my recovery!

[Click here for my podcast about that walk from Melrose, Scotland, to Holy Island.]

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Left Neglected: week 8 strokeaversary report

I finished a fascinating novel about a brain injury called “Left Neglected” this last week. At one point the main character is afraid she’s being sent home from hospital too soon. She doesn’t feel ready. I’m starting to wonder if this is happening to me. When I’m tired, my speech still slurs, and then I have to be careful eating, or I bite my lip or tongue. My walking has improved greatly. But when I catch or stub my left foot, as I inevitably will at some point, I’m always a split second from falling, especially while using my cane. Still, I’ve graduated to being allowed a cane sometimes. And now, the nurses at St. Martha’s are starting to greet me in the hall with “Why are you still here? You should be home by now.”

However, it’s not the nurses, but the physios and the doctor who make that call. For the sake of my hand they want me around a while longer. Back in September I was predicted to go home mid-December. Now I’m hearing it might be in just a couple weeks! There’s another wrinkle: Dr. Gorman and Lori, the head physio (that’s Lori and me above), are checking whether I could be sent to a specialized occupational therapy facility in Halifax to try to help my left arm improve. Sara immediately dubbed it “hand camp.” “You can still go home weekends,” Dr Gorman assured me. I’ll know more soon.

I’m not young but I’m the youngest patient on our wing. That and my strong recovery mean I don’t need much help from the nursing staff … so they tend to ignore me. This weekend they moved me to a private room. Hallelujah! This means I’ll get a full night’s sleep without 4 am wake-ups, and blaring Jeopardy and nature shows all day.

My walking is still not great, especially when I’m tired. But it’s not bad. As of this last week, I’m officially evaluated as independent with a cane and walker. It’s ironic that the arm motion I most have to practise is the one you make when giving a “cheers” (the little arm wagon you see below helps me rebuild that muscle).

One thing I have trouble with is clipping my fingernails and toenails. Phyllis, an LPN who is the closest to a saint-nurse I’ve ever met, came on her own time at lunch and cut my toenails while we talked about Kenya and Cape Breton. I’ve never had a pedicure and it felt wonderful. There are so MANY people and kindnesses for which to be thankful: delicious Barr’s chocolates from Stratford ON thanks to Susan and Darin Jacques, letters from Rev. Aaron Billard and visits from Rev. Peter Smith, the local United Church minister, & cards from my cousin Raymond Anderson and from George Greenia.

I’m still trying, with limited success, to learn how to supinate my wrist and open my fingers. Opening jars requires almost acrobatic skill and sometimes both knees. But I’m getting better at small tasks that require closing and holding my fingers. In the physio kitchen I peeled a carrot and a potato. This Remembrance Day weekend I got to spend THREE days at home – blessed days! – and the best physio of all was holding cards for a game of Uno with Sara’s parents Shirley and Winston (I had to pry my fingers apart afterward to get the cards out).

Sara and I were given 20 spruce trees which we planted around the property. Or, I should say, which Sara planted while I pointed my cane and gave advice. This was my chance to try walking with a cane over rough and uneven terrain. I didn’t fall!

The pictures and videos perhaps make things look normal…but they’re not. I move at a glacial pace around a room. If you called me and my back was turned I wouldn’t glance over my shoulder for fear of losing balance and tumbling. When I’m tired or cold, especially in the mornings, my hand and sometimes my entire left side can go into a painful cramp. I’ve developed an itchy rash from sleeping on rubberized mattresses for two months, so Sara is putting cortizone cream on my back.

BUT….I’m so far ahead of where I was!! Every day I feel how deeply upheld I am by the prayers, meditations, and thoughts of so many of you. I rely on that support every step. I continue to know how fortunate I was to have suffered a stroke that only affected my motor skills. I get to go home more and more, and spend time with Sara. And I have an appointment at the end of November in Halifax as a first stage to fixing the hole in my heart that perhaps let a clot through to my brain.

Sometimes I feel like this crab, with one puny arm and hand that just won’t develop. But when I look back I see how far even that hand has come. I’ll learn more this week about whether I’m being transferred to Hand Camp in Halifax. Just today, for the first time since the stroke, I was able to walk – okay, hobble – with Sara down to the water at the end of our property. That has always been a life-giving place for me, and it was so good to stand there again and breathe the cool air.

I’m thankful.

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Week 6 Strokeaversary: setbacks & slowdowns

;

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.

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Week Five Stroke Report: Bananas

I’m reading a book that my physiotherapist Lee loaned me: The Brain That Changes Itself by Norman Doidge. The crucial message about brain plasticity seems to be “use it or lose it.” It dawned on me that in some ways, unlike my left leg, I wasn’t even trying to use my left arm outside of physio because, well, it doesn’t work. So this week I determined to use it somehow, however ineffectually. One day, I held a banana in my left hand and gripped it just long enough to peel it. I forced myself to NOT use my right hand, but instead to hoist the banana with my heavy, resistant left arm, bob my head until I could steal a bite, dropping it back into my lap after each effort. I looked like a toddler. Like a toddler, I have only spastic reflexes, and no fine motor control on the left side. Put cheerios in front of me and 99 of 100 will end up on the floor. But I ate three bananas that way this week.

Someone asked how soon I might be back to typing with both hands. I don’t like to think about it much, but the truth is that it’s possible it will take years. It’s possible I’ll never type with my left hand, or be able to hold down the strings on the fret and play guitar, ever again. I don’t believe that. I think I will, and it’ll be sooner. But there are no guarantees. I’m not writing this asking for reassurance: I’ve been overwhelmed by the support I’m getting! And I’m making incredible progress. The head of the physio team told me while she wouldn’t wish a stroke on anyone, she’s delighted to work with me. “We’ve never had a patient like you,” she confided. (Mind you, her business is encouragement.)

My leg improves a little bit each day. By week’s end I actually went up the practise stairs slowly one foot per stair, like I normally would have. They’re trying me out with a cane: I walked from my room to the physio gym and back with just the cane, and around a slalom course. But they (and I) prefer the roller walker. In part this is because it exercises my left hand while I grip the handle. Now when Sara gets me out on a day pass for a few hours, I can walk all the way out of the hospital and to the parking lot with just the walker, no wheelchair needed. Each time I’m home (which was almost daily this week during university Reading Week), Sara puts on a record and we have very careful dance therapy sessions! Lee had me pointing my foot like a dancer, and walking heel-toe as on a tightrope (holding the parallel bar). That was fun.

In the absence of equivalent progress with my hand, I’ve been told to use my imagination. Apparently, the science says that carefully imagining lifting your index finger again and again digs the same new neural pathways as actually moving that finger. Doing reps of carefully imagined hand movements is crucial to neural plasticity and “counts” as restorative exercise (it certainly feels like it). Fortunately, as many of you know, I’m blessed with a strong imagination. So if you come into the hospital and see me with my eyes closed, a strained expression on my face, I might be imagining wringing out a dishcloth. Or eating an ice cream cone in my left hand.

It’s working. Friday, for the first time, I flexed my fingers outward a centimeter or so, trying to push a cylinder. I can push my fingers downward in sequence from thumb to little finger, not just in my imagination. New neural pathways are forming. I’m sure of it.

My pilgrimage friend Shawna Lucas dropped by for a visit. She left me a pilgrim rock she created from local beach stones.

Fellow StFX walker Leona English stopped by with dahlias from her garden.

University of Regina Press, who published The Good Walk, sent a beautiful bouquet with equally lovely words of support.

My friends David and Margaret Hundeby Hunter sent a cozy handmade prayer shawl as a hug over the miles.

Scholar friends Shayna Sheinfeld and Meredith Warren thoughtfully sent Sara a week of delicious meal kits.

This last Thursday Heidi Campbell sent me a photo of her brand-new Master of Education degree from the University of Regina, along with this message: “I’d like to dedicate this to you and your recovery. You were the first person I knew who ever did an advanced degree (you were doing it when I was your babysitter). Thank you for showing me that parents can do anything!”

I deeply appreciate these and the messages of support, prayers, and solidarity from friends across Canada and as far afield as Malta, Brazil, Ireland, Norway, and Virginia. I think of all this when physio Ria tells me for the fifth time to twist my wrist, and all my heaving and grunting barely twitches it.

Sometimes, at 4 in the morning when I wake wondering what will happen to me, and if I’ll ever fully recover, I meditate myself back to sleep with the words “breathe in support, breathe out hope.” So: thank you. Every day, a little more support, a little more hope, a little more progress. All these little days are adding up.

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4 week stroke report: Thanksgiving

My one-month strokeaversary falls on Thanksgiving! It’s not hard for me to give thanks in this post. I’m on a day pass from the hospital, writing this at our dining room table, looking out at the watermarsh view I’ve been missing for a month. Sara is at my side. I managed the stairs to get into the house. From time to time my largely inert left hand and arm begin to slide slowly slide off the table, dragging the tablecloth part-way along. But Sara just straightens it again, replaces my arm, and we keep talking.

Midweek Dr Gorman told me I could go out of hospital for a day pass with Sara if we wanted. She didn’t need to say that twice. Between giving mid-term exams Sara rushed to the hospital, wheeled me to the car, and took me for a drive to see the peak leaves on one of the nicest fall days we’ve had.

Sara’s parents, Winston and Shirley, drove down to see us. Her 89-year old father and 82-year old mother bustled in carrying a raised toilet seat, a wheelchair, and some other items…. “thought you might need these,” they said. They’re an incredible support. They also brought some food for Sara and me: turkey and dressing, and lemon cheesecake for Sara’s birthday.

Friday Sara took me home for a birthday dinner with them, and Saturday we enjoyed our own Thanksgiving and birthday dinner. Sara also gave me the full haircut and the beard trim I’ve been wanting. She’s added chauffeur, cook, barber, and laundry to everything else she’s been doing for me. My Thanksgiving definitely includes her graceful, cheery, and determined support.

It was another week of small improvements for which I’m so grateful. The physio and OT staff who work with me, Lee, Lori, Ria, Lena, and sometimes Juanita, Jay, and Abbie, are gentle and encouraging. But also taskmasters when needed (this morning Abbie barked out “give me five,” sounding very much like my high school coach). Early in the week Lee said I could try the stairs. The saying is:”good goes to heaven, bad goes to hell” (the unaffected leg leads first going up the stairs, the affected leg goes first going down).

I tried a German-made stationary bike that measures the force of each leg to help me balance better. I took a hand-held squeeze test: let’s see if you can get a pound or two, Ria said encouragingly. I squeezed 20, which made her eyebrows go up. My average with my left hand over three squeezes was 16.3…for comparison, my right hand squeezed over 93 pounds.

There’s still very little fine motor movement in my left hand. The team is sending electrical current into my arm to cause my muscles to spasm and contract, in hope that new neural pathways will form around the 3-cm damaged area deep in my brain. The exercises Lori and Ria have me do would be simple for you – twist your wrist, swing your arm outward from the elbow – but they leave me gasping and sweating after a few reps. Still, I wouldn’t trade that precious therapy time for anything. I’m lucky to have daily access to a physio team who want to see me improve.

I keep getting messages of prayers and support: congregational prayers from the Finns and Estonians, and others, candles lit in Munich, Florence, Montreal, and Portugal, daily Medicine Buddha prayers in the Rinzai-Zen tradition, a Gaelic caim of protection, as well as home candles and dedicated walks. I remember these when my whole body goes rigid trying to slide my arm a few inches forward on the table without using my shoulder. The thoughts and meditations and walks and prayers help me tremendously – thank you!

I’m also thankful for the many incredible scholars around the world who are providing Zoom or recorded lectures for my class, and another incredible scholar, Dr Robert Kennedy from our department, who took over my course after it became clear I wasn’t returning soon to teaching (my students sent me adorable hand-made cards).

I’m especially thankful that there may be a cardiac procedure to fix the “hole in my heart” that potentially allows clots through to my brain. But more on that later, in a future post.

For now, there’s more than enough to be thankful for…especially you who are my community of support. For today, then, I’ll gratefully enjoy the view a bit longer before I have to go back!

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Week 3 Report: Stroke-A-Versary

Scotland

Before anything else, THANK YOU to all of you who’ve said a prayer, sent up a thought, done a meditation or walk, hoped a hope, or lit a candle for my healing. I’m strengthened and encouraged by you. Thanks. It helps me tremendously. Folks have sent me photos of candles they’ve lit for me in Scotland, in Germany, in Norway, and all over Quebec and Canada.

Norway

Oddly, even though my prestroke agenda has emptied, my days are full. The ingredients of those days are basic, and familiar to anyone who’s been stuck in hospital for an extended period: did I have a bowel movement ? (which sometimes means: was there a staff person around when the urge hit?), am I standing enough to take pressure off my derriere and keep myself healthy? Did I do my hand movement visualization exercises? Did the nurse forget to move my table back after taking my vitals, necessitating a 10-minute-carefully-planned maneuver to recover it, along with the call bell? Can I get a bowl with warm water to wash up, or will breakfast arrive early, which will mean no space for the tray on my table and the impossibility of fetching my food off the chair later? When did I last change socks? When is shift change, which will eliminate help for a half-hour? If I forget to charge my earbuds, how will I be able to sleep when the man with dementia across the hall breaks free from his two security accomplices and roams the hall cursing in the night?

It sounds worse than it is. For every aid who empties the urinal then slouches out of the room leaving it 20 feet from the bed, there is another whose warm greeting is sunshine, and who out of the blue offers to wheel me to the patio for some sun or to change the water in the flowers. Or the nurse who said to us “you mean you haven’t seen your test results? They’re your property…let me fetch them so you can take a photo or scan them!”

Speaking of tests, mid-week I was taken by ambulance the 2 hrs to Halifax for a TEE test of my heart. It turned out to be positive: I have a “communication” (a hole) between the upper chambers. Apparently this is more common than most people know and affects about a fifth of the population. The problem is that it can allow clots to pass from the legs directly to the brain. When I asked the ward doctor what this meant in terms of next steps, he didn’t know.

To this point I’ve been sheltered from many of the ill effects of institutional care by Sara, who has been both cheerful caregiver and steely-eyed advocate for me all along. Unfortunately she was brought low this last week by a terrific cold none of us wants me or other patients to catch.

The good news is that this last week also brought improvements for me that have helped that situation. When I’m not tired, my facial droop almost disappears. Mid-week the physios declared me able to transfer from bed to chair and back again by myself. I don’t really need spotting even to the toilet anymore with my walker, so I expect that requirement will be lifted soon as well. The doctors have written me “passes” that mean, as soon as Sara recovers, that she could take me out of hospital for short periods – although neither of us wants me to miss any physio. Yesterday and today I walked twice the full length of two wings of the ward to the small chapel, where I could look out at the changing leaves. Once I got out myself to the small third floor patio and just enjoyed the sun on my face a long while. I’ve learned to move my body so that I can sit up myself on the edge of the bed and can now give myself a sponge bath. The nurse couldn’t believe I can put my own socks on. Not pretty, but do-able.

(video below of walking)

My left leg has moved from being unresponsive to generally going roughly where I want it to, which is fantastic. It’s draggy, but coming along. Arms and hands recover more slowly, they say, and I’m no exception. But there have been changes: I can now put a bit of limited weight on my elbow and arm, I can make a reasonably tight fist now, curl my bicep and curl my fingers with much less concentration than before. I lifted my index finger once. I can curl my fingers around the margarine and use my other hand to pocket it into my left thumb to help spread it.

My brain seems to have forgotten where to send the “move” messages to my left hand. Lori, my cheerful and steadfast OT, has taken to tapping the muscles which need to work with her finger…this helps my brain know what to focus on and works surprisingly well. My triceps were hardly my strong suite even before the stroke…I search my mind in vain for them now, until the tapping begins.

It’s been encouraging that several of my earlier writing projects came out this last week. My piece on Aware-Settler Hermeneutics with the Society of Biblical Literature’s teaching resource Bible Odyssey, the proofs for my article (right beside Sara’s) in the upcoming volume Judeophobia, and my essay in CrossCurrents about walking in north Dublin, Ireland and saying goodbye as we headed back to Canada. I can’t celebrate these with Sara as I would at home. But I’m thankful nonetheless.

So: every day some small improvements. It’s interesting that relationality, so important to our thinking about planetary crises, and about justice, is also so crucial now personally, to the body’s working. The unaffected parts of my brain and my left side are building new relations. As in every new relationship, that takes time, patience, good humour and a willingness to celebrate every new connection, no matter how modest.

photo of two student nurses who took excellent care of me last week.

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Two-week strokeaversary

It’s ironic that my two-week stroke report coincides with Sept 30th, the feast day of St Jerome. My Gatto Chair position at St Francis Xavier University is to research and eventually write an historical novel on Paula, the rich young elite Roman ascetic companion of, and patron to, Jerome.

I’m not getting any of that work done now, here in the hospital. My dean and chair are graciously paying my usual stipend while we figure things out.

Jerome’s letters are hilarious. He’s a famous braggart about the self-inflated hardships he faced. I’ve been thinking on that when I have to ring a bell and wait on the harried staff here to come help me go to the toilet or move me to my wheelchair. Or just about anything.

I hope I don’t sound like drama-queen Jerome when I report on my week.

I started official physio sessions this week. They will be twice a day, once on weekends. A team of four came in to assess me. They seemed pleased with the progress even since my last charting. I was surprised to hear I might be up to three months in hospital, eventually with times to go home overnight and weekends, depending on my progress. They pushed and pulled and asked me to imagine I was moving my unresponsive arm, and told me they could detect some of the muscles attempting to respond. While one had my foot, behind me another started waving. I turned my head to see what she was doing and apparently passed that test, by proving I still have my peripheral vision.

From my window I can see up toward a white water-tower and Mount Cameron farm, once the spot where the radical and dynamic sisters of Saint Martha raised food for the hospital and the university. Sometime during the week while looking at that I decided my three month goal will be to try to walk up the small rise to that tower with Sara. No one was around when I first thought that and for 30 seconds or so I wept giant wracking quiet sobs, perhaps at the shock of the contrast with a walking pilgrimage just two weeks prior, then got on with life.

My gentle physio coaches, Lee and Jay (who has tattoos of the Muppets) had me going through the movements needed to get my left foot off a bed and on the ground so I can swing myself to a sitting position on a bed … no mean feat with no strength in my left arm for pushing up and nothing for my right to grab. My core strength will be great after this. Sunday (yesterday) at the end of the session, Lee asked me to walk the twenty feet between the parallel bars with no one holding my elbow or waist. It was my first unassisted walking since the full stroke, and scary as hell. But it felt great when I was done. After physio I slept 20 minutes.

My arm, in brief: with a lot of grunting and core tightening I’ve managed to curl my left-hand fingers slowly into a light fist. I can now bring my thumb to my forefinger using intense concentration. Just yesterday I imagined doing a bicep curl and my forearm lifted slightly. I also managed a slight wrist movement for Sara.

The physios said that what I’d already been doing – imagining using my arm and hand in real time, as if they were working – was in fact their initial strategy. I’m already on the right track.

A friend sent me a photo of the candles they lit for me Sunday morning. It means a great deal. For a Lutheran, the extent to which I appreciate and crave candles lit for my recovery is perhaps strange. But everyone’s words and gestures have me feeling surrounded with care. Buddhist friends have let me know they spent meditation sessions with me as their focus, another dedicated a walk to me, there are prayers in congregations across the country, and my name has been read in more than one synagogue in the weekly prayers for health. A letter written in fountain pen, homemade muffins, cards, flowers, a fruit basket, emails, lucky origami stars, emojis, thoughts. They’re all importanyt I’m grateful. Thank you – the support sustains me.

Sara is such an incredible care-giver and coach and sponge-bather and daily smoothie provider and cheer-leader … and yesterday — my jailbuster! Yesterday afternoon was sunny and warm. Instead of taking me to the usual roof-top patio on our wing, she wheeled me right on past into the elevator, then out the main entrance of the hospital into the light and air. We headed for the nearby grotto garden. The bees were buzzing in some purple aster and brown-eyed susans and other late flowers, and we found a wooden gazebo where we read to each other so I could practise improving my speech and enjoy the sun.

Then, before she left, Sara held my arm and hand carefully and I danced to some tunes on my laptop from my wheelchair. She moved my left hand and arm to match my right. If anything will get this arm going, it might be dancing!

I wonder what Jerome would have thought of the first song to pop up on my mixed playlist. It was: “You Can’t Always Get What You Want.”

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one week post-stroke

or as Sara calls it, my strokaversary….

today I felt a bit tired, and down when the doctor told me about possibly having to go to Halifax for another heart test and the lovely, kind physiotherapists remarked that some folks never recover use of their hand. i’m officially a 2-person transfer here in the hospital since i tangled my feet two days ago and fell on my way to the chair.

whats been hardest is not being absolutely sure my condition has bottomed out yet. i know it will be a long hard road to whatever recovery i’m fated for. but i’d like to be going the right direction at least.

hard to believe i walked 90 km with my youngest up the southwest coast of cape breton just a couple weeks ago, and 23 km from Pomquet Beach to Antigonish on the eve of the stroke. right now my pilgrimage is to shuffle my walker to the end of the hall with one of the saints who works here helping hold my completely unresponsive left hand on the handle and me coaxing my reluctant left foot to listen to me and lift and step.

but then tonight I was able to lift my bad foot up on the bed by myself, in what seemed a momentary miracle, and I think I moved my thumb a hairbreadth (Sara saw it too). I’ll take these small victories for now.

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A Nova Scotia Ninian Walk

Would you like to join a group walking from Pomquet Beach to St Ninian’s Cathedral, Antigonish, linking South-West Scotland to Nova Scotia and remembering an ancient Celtic saint on his feast day? If so, contact Dr Matthew Anderson of Saint Francis Xavier University, Antigonish.

Saturday Sept 14, 2024 we’ll start from Pomquet Beach and head to Lower South River. On Sun Sept 15 we leave from Lower South River to St Ninian’s Cathedral to arrive in time for the 150th anniversary celebration. (This is an ecumenical pilgrimage, open for everyone, not just Catholics). On Saturday we will stop by Ste-Croix Church in Pomquet and have lunch at the Musée de Pomquet as we pass.

The walk is 23 km in total (17 Sat, 5 Sun). For more info see the FAQ sheet below. To sign up, contact Dr Matthew Anderson, Gatto Chair of Christian Studies at Saint Francis Xavier University, at manderso (at) stfx (dot) ca. Please also check out the three videos giving background information on Ninian, the Walks, and Antigonish’s Ninian connections!

Dr Anderson walked the Whithorn Way, the Scottish pilgrimage to St Ninian, in 2019. His book about that walk and this Nova Scotian trek will come out with Pottersfield Press in 2025.

FAQ sheet Nova Scotian Ninian WalkDownload
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Walking the Celtic Shores

“Take a picture of your father,” I said. “Something nice,” I said.

One of the frustrations I had while being the part-time director of Camino Nova Scotia was leading pilgrimages I couldn’t actually walk! I schlepped bags, drove, unlocked and cleaned halls, and cooked for the pilgrims who had signed up. All the while wishing I could walk the trails in Nova Scotia myself.

So this spring, when my youngest from Montreal suggested a “long walk with papa” I jumped at the chance. We finally settled on the Celtic Shores Trail in south-west Cape Breton. It was close to home, and because of the SATbus (Strait Area Transit) I was able to plan a way we could leave a car at the end of each day’s walk and still get back to the start point. (Although it meant some VERY early mornings by the end).

All told, we walked from Troy to Inverness. We had a WONDERFUL time, met lots of folks (although only one other distance walker on the trail), ate tons of sea-food, listened to Cape Breton fiddle music, chatted all day as we walked, and swam in the ocean.

I highly recommend this trail, and the use of the SATbus to coordinate getting back to a car at the end of each day.

Some tips: check the “take a break” walkers’ benches for wasps’ nests…before sitting down! Note that the SATbus doesn’t run weekends, and must be booked in advance. Check out the Ceilidh Fishers’ Coop in Port Hood for fresh seafood and to report your progress to a local trail volunteer. Bring bug spray (although they weren’t bad for us this time around), sunscreen, and rain-gear. We had bear-spray. Thankfully we didn’t encounter any, but we saw some fresh scat. Especially if walking on a weekend, keep your eyes open for four-wheelers, which are a far greater concern. And have fun!

Our stationary Air B&B RV in Craigmore, NS