somethinggrand

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.

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!

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.

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.”

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.