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11-Month Strokeaversary: an update in 9 gerunds

What better therapy than dancing with Gabe? (video below)

As the ONE-YEAR anniversary of my stroke approaches – wow! – my recovery continues to follow the quick rise and flattening curve (see below) that the medical staff predicted for me, as for other stroke survivors. And it’s true – eleven months in, the changes are more subtle. However, every week there inevitably still turns out to be some marked improvement. My physio supervisor, Jessica, tested me last week and told me I’m much stronger in my leg than just a month ago, and my left arm has also strengthened considerably in recent weeks. The Theraband exercises must be helping.

My recovery has gone far, far beyond what many of my doctors and medical team initially predicted in the dire days of last fall. With Sara’s urging, I continue to believe that the curve will never flatten out completely. As the book Stronger After Stroke maintains, there never needs to be a complete plateau to recovery, for a stroke survivor who is fortunate enough to have good support, a stabilized health condition, and dogged determination to work together with the brain’s natural plasticity.

So on this 11th-month strokeaversary, here’s some of what recovery has looked like!

Theraplaying

The wonderful physical therapy and occupational therapy folks at St. Martha’s Regional Hospital are starting to hint that I can’t be an outpatient forever. Of course, they’re right. “As much as we like you and look forward to our sessions,” they tell me, “we have to make room in our case load for new patients…” The hospital has been incredibly generous, and I’ve come to really love my outpatient team. I moved from two sessions a week to one only this last month. Colin, the smart and thoughtful tech who took over from the equally helpful physio tech Janna, is now regularly kicking a soccer ball with me. The catch: I have to use only my left foot. I’m finding that soccer and the funny-face bean-bag toss are my favourite therapy activities. Like a toddler, I’m improving my balance, coordination, and hand movements through play, which makes it seem (almost) easy.

Medicating

After my heart surgery in April to close a PFO (the hole between the upper chambers of my heart), the Halifax surgeon put me on precautionary Plavix, to guard against post-operative complications. I just came off of it and I couldn’t be happier. I’ve been bruising after every blood test (one time the blood actually spurted out) and also when I bump or ding myself as so often happens in summer gardening and construction season. I remain on low-dose Aspirin and a suite of blood pressure pills. But my GP and the cardio team at the hospital have dialled back even these a bit, and now I can crouch and stand up without threatening to black out. Sitting on my haunches to look in a cupboard reminds me of my old self.

Straightening

It was Lindsay, the incredibly gifted and helpful Occupational Therapist at the Nova Scotia Rehabilitation Centre in Halifax, who suggested “Oval 8 Finger Splints” for my left hand’s fingers most reluctant to recover – my ring finger and my pinkie. My pinkie has been broken a few times over the years of basketball and tended to go its own way even before the stroke. I find the splints helpful at the end of a busy day when my fingers tend to curl and stiffen. My typing is improving slightly, although when my left hand quickly tires, those two fingers droop and tend to type their own messages.

Hearing

Of the many effects of the stroke, one of the most subtle has been a slight alteration in my hearing, or more accurately perhaps, my brain’s processing of what I hear. I’ve noticed more trouble understanding Sara when she’s in another room, or there’s ambient noise.

At the same time, my need to focus more carefully on whatever I’m doing so as not to lose balance, trip, or drop something, means my ability to multitask, including “listening, while…,” has diminished. And, I’m not young anymore.

So my audiologist appointment finally came through. The audiologist took me into a sealed quiet room, ran tests on both ears, then gave a series of tests I had to respond to.

The results? Apart from the normal post-stroke inability to multitask because of increased need for concentration, my ears are typical old guy’s ears: some age-related hearing loss, and that’s it.

I actually enjoyed the challenge of having four numbers spoken at once into both ears and having to try to correctly identify them!

Canning

When Gabe, my youngest, came to visit in August with Ray, they said they wanted to do some jelly-making like we did last year. The Saskatoons were done and it was a bit early for the chokecherries, but the jelly turned out well.

Our place is prolific for berries despite the scary and record-breaking drought. I spent hours picking Saskatoons earlier in the season, and our strawberries and grapes are plentiful.

Holding boughs with my left hand while picking berries with my right turns out to be good therapy, too.

Dancing

Gabe’s visit this month also gave me a chance to re-learn and re-try the swing steps we’ve done so many years together, and also to re-learn some of the guitar chords my fingers have forgotten, from all the songs we used to play together. I’m thankful.

If you watch the video (click on the photo below), you’ll see how my face goes mask-like (not direct stroke damage but because I’m concentrating on not falling), my left arms wants to pull in and tighten, and I lose my balance briefly. But overall, what a joy, and what an improvement! Sara has been keeping up my dance therapy since Gabe left…

Reading

My worlds overlapped recently when The Canada Lutheran asked Sara to write a column for their regular Q&A feature. As usual, Dr. Sara Parks, who is a consummate teacher and communicator, produced something interesting, academically solid, and pitched perfect for non-academics. Have a read below.

I recently finished Tanis MacDonald’s wonderful book Straggle. I highly recommend it – it’s full of beautiful writing and profound observation. And Tanis’s thoughts on “ungainly” walking fit my new post-stroke life so well….

Travelling, Walking, & Celebrating

This was also the month that I took my first solo plane trips. I’d been invited west to celebrate the tenth anniversary of our Wood Mountain – Cypress Hills trek in the summer of 2015, featured in my book The Good Walk (URP, 2024). The Saskatchewan History and Folklore Society, which has spearheaded the walks since, was having its board meeting at Wood Mountain in conjunction with the event.

Even though Sara could not accompany me to hoist bags, hold my hand and generally be my security blanket, I was lucky that my brother Mark and sister-in-law Barbara (a recently-retired physio) were there to meet me in Regina. We stayed in their camper at Woodboia Camp near the Wood Mountain Historic Site (the NWMP Fort at Wood Mountain). That’s where Hugh Henry, Richard Kotowich, Hayden Thomassin and I started out 10 years ago to walk the 350-km North-West Mounted Police Patrol Trail (Traders’ Road) across Treaty Four territory.

10 years later, posing with Hugh Henry of the Sask History and Folklore Society

Among the highlights of my trip was visiting the Badlands in the “East Block” at Grasslands National Park. If you ever have the chance, be sure to visit this incredible place.

One of the most significant tests of my recovery was putting on my hiking boots (this time, with elastic laces) and re-walking a portion of the trail from Wood Mountain to the Lakota First Nation. Ten years ago, we did the three miles easily in the morning. This time, I cut out when the trail got muddy and hard to walk, and rejoined later. I managed to walk about a mile and a half in total.

Another highlight was meeting Dr. Claire Thomson, who led us around the historic site at Wood Mountain and gave both an academic and a personal history of the area. Dr Thomson is a descendant of one of the early North-West Mounted Police officers, and of his Lakota wife. Her PhD research on the Lakota history of Wood Mountain won the prize for best doctoral thesis in Canadian Studies recently…I quoted her in The Good Walk and was delighted to meet her in person.

Authoring

At the Regina Chapters-Indigo store I spent an afternoon meeting old friends and new, and signing books. It was great that my western trip gave me that chance. Also this month I had a chance to sign books and present Someone Else’s Saint: How a Scottish Pilgrimage Led to Nova Scotia (Pottersfield, 2025) at the wonderfully-full and fascinating Dartmouth Book Exchange. It’s an incredible place, well-worth a visit!

My life as an author looks like it will keep me busy into the fall as well. In September the Atlantic School of Theology is hosting me for a series of six online lectures on Leonard Cohen and Saint Paul, following up on my book Prophets of Love (MQUP, 2023). You can find more info on those lectures by clicking the “Almost Like the Blues” link HERE.

This week my interview with CBC Radio One Cape Breton’s Wendy Bergfeldt came out on the afternoon show “Main Street.” God bless the public broadcaster! I was excited for my first Nova Scotia CBC interview…and our talk went so well it was broadcast over three separate afternoons! It was wonderful meeting Wendy – it turns out we have LOTS in common: growing up from Scandinavian settler grandparents in SK, attending the U of S in Saskatoon during the same years, living in the UK for a while, and then settling in Nova Scotia. Oh, and did I mention? A shared interest in decolonization, history, and pilgrimage! I’ll post the links to the interview soon. (In case you missed it, my earlier CBC Montreal interview with Sonali Karnick can be heard here).

Next Month: One Year

Soon it will be a full year since my stroke. I’ll be marking the occasion, for sure. Will I be celebrating? I’m not sure what to say.

My stroke cost me a lot that I haven’t yet regained: my sense of secure balance, my ability to walk long distances, to run, to dance smoothly, and to play songs smoothly on the guitar. And crucially, I can’t type with both hands like I used to, which is how I’ve written my essays, lectures, and books.

BUT: the stroke helped me realize what a community of support is around me, how good so many people are, what an incredible partner I have, and how precious life and health is. I’m thankful every day for just being able to walk and speak (and pee and shower!), teach, read, think, and do what passes for a “normal” life for me. Much less all that’s listed above.

In the end, it’s all gift. Because of my stroke last fall, I realise that now more than ever.

So, see you next month! I wonder what surprises await?

Sara found a more elegant solution for dripping juice than the complicated ladder-thingy I typically used.
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Nine-month Strokeaversary: Summer, and the Living is Easy(ish)

My Left Hand

Recently, a near-miracle happened. For the last couple of months, one stroke recovery strategy for my left arm has been playing catch with my wonderful therapy assistant Jaana. She throws a tennis ball aimed vaguely towards my torso, and I try to catch it without using my right hand. Typically, I’m not completely catching it — more catching/cupping it between hand and torso. (Throwing it back to her is also a challenge because my spastic fingers won’t let go.) But last week, Jaana accidentally tossed the ball too high and suddenly, to her immense surprise and mine, my left hand shot up and I caught it in mid-air! Neither of us could believe it. I hugged her and we immediately ended my session for the day on that high note. No way was I was going to top that (in fact, I haven’t been able to do it again since, although I’m able to consistently catch underhand, sometimes just with my hand, more often against my body).

A few days ago I managed to tie my work shoes without help. That felt like a major win. Afterward I sat awhile, pleased with myself but so winded from bending over, I had to wait to recover before heading outside. On my new meds my blood pressure actually gets low sometimes! The herons have returned to our little inlet, along with scads of songbirds, so I can sit on our deck during such recovery times and just …. recover.

My Left Leg

The physiotherapist regularly tests my left leg strength and flexibility. Although I’m still limping, and have to be ever-mindful not to trip over my dragging left toe, this month she discovered it is now back to full strength! Why the limp, then? “It’s strong enough to walk without a limp,” she explains. “The problem isn’t your leg. It’s your brain.” I don’t know how to convince my brain to relax that left calf and to pick up my left foot and bend my left knee automatically. Sometimes I’m pretty smooth, but as soon as I’m tired or cold, I’m prone to a kind of geriatric side-to-side waddle that means a sore hip. With absolutely every step I have to remember to lift my foot. It’s frustrating (until I remember how recently were the days I couldn’t walk at all!)

Lately my twice-a-week physio dates have me walking on different paths near the hospital while the therapist assesses my gait. I even found a labyrinth. Sometimes I walk to music, which seems to make my gait smoother. I guess my brain responds to The Stones better than the stones.

Botox? Why not?

You may not have pegged me as a Botox kind of guy, but I’ll soon be a new man. The doctors arranged for a shot of Botox in my left calf in the hope that — just like Botox deadens face muscles to prevent people from getting wrinkles — it will temporarily deaden my calf enough to keep my leg from “hitching” with every step, training my brain to trust that a smoother, more natural gait is safe again. (When one is initially paralyzed by stroke, the brain sometimes learns to “freeze” an area to protect it from flailing and hurting itself, much like when you’re dreaming about running but your legs aren’t actually moving.) My initial Botox appointment was cancelled because I had to fly out west for my brother-in-law Vern’s funeral. I was told the next opening would likely not be until September. I admit I’d been looking forward to a possible breakthrough for my leg. In the middle of my little funk, Sara, who has often had moments of clarity that have helped my recovery, said: “well, if shocking your arm worked so well for your hand, why wouldn’t it help your leg? Hook those wires up to that calf and give it a try!” (I’ve since found an article that confirmed her insight.) After only a couple of days of shocking my calf, I’m already noticing small improvements in my gait. (And my Botox is now bumped forward to mid-July!) At so many stages, I don’t know what I’d do without Sara’s help, advocacy, advice, watchful eye, optimism, wisdom, and sense of humour.

Longest Walk so Far!

Last week I had a visit from fellow writers-about-walking, Ariel Gordon and Tanis MacDonald. They were in Nova Scotia at a writers’ retreat at the Elizabeth Bishop House. We traded books. I took them to Pomquet Beach, and they convinced me to try walking the beach with them. (Both have written about walking slowly, and Tanis about walking and disability.) We went slow, checking out beach stones and shells. By the time we reached Chez Deslauriers road, about a kilometre later, I think my left foot was dragging more sand than I was leaving behind! But it IS getting better, even pre-Botox! I later realised it was my longest walk since the stroke.

My Speech and Hearing

I’m very, very thankful for all the things I can do. AND, it seems I can accomplish more and more each week. But when I forget to focus on how far I’ve come, and think too much of everything I want to accomplish, I can get frustrated.

Something that’s not as obvious to outsiders is that my stroke seems to have caused a kind of aphasia. During a social event recently, people had to ask me several times to repeat myself. Sara tells me that she finds I’m speaking more quietly. This may be a sign of hearing loss (of course, there is an age factor as well). But since the stroke, I find I can’t distinguish between a “v”, “d” or “p” when someone is speaking, making me misunderstand whatever they’re saying. And because of the stroke’s effects, I “hear” people slurring “s”s, even when they’re not. Almost every physio I spoke with about this said the same thing, “Matt, I think you’re noticing this because you’re you. Most stroke patients wouldn’t be this observant.” I guess it’s a blessing that that’s pretty much the stage of stroke recovery I’m at: the fine-tuning stage! (They did put me on a list for a stroke-related hearing specialist.)

On the plus side, I have recently become eligible for a beer that one of the hospital LPNs, Dionne, promised me last fall when I couldn’t move my hand. She said when I left the hospital that we’d go out for a pint of beer if and when I was able to raise the glass and “cheers” with my left hand. As of this week, I can now raise my left hand completely above my head, and I successfully cheers-ed Sara with a wobbly left handed glass of sparkling. (Ironically, my right arm now has a frozen shoulder from overuse!)

Another first: I was delighted this last week to pull the cord on our hand mower, start it up and actually cut grass. Both hands on the handle!

My Heart

A bit more on my heart surgery for those who may be interested: on April 23 in Halifax, the very professional, very personable – and very skilled – surgeon, Dr Sumaya, made an incision in my groin. He pushed a catheter tube through the incision and up into my heart’s upper chambers. Once it was in place he inserted a wire through it to explore the unusual gap that has existed, undetected, between my heart’s upper chambers since I was born. That hole allows blood (and potentially, clots) to slip through where they shouldn’t, taking a dangerous short-cut to the brain.

I was awake watching the screens. To me, what Dr Sumaya was doing looked like a plumber or electrician trying to thread a “fish line” through a tiny hole. He couldn’t do it, and told me that the gap was smaller than expected and perhaps they wouldn’t need to plug it after all. However, a quick “bubble test” determined there really was flow between the chambers (meaning: possible future brain clots).

“I’ve Never Done This Before”

A surgical huddle followed. I was on so many relaxation meds I didn’t catch most of it, until I heard the surgeon say: “Well, I’ve never done that before.”

THAT woke me up! I may have some of this garbled, but he explained that they proposed to push/drill a second hole between my heart’s chambers, large enough to pass the soft metal umbrella washers through, then bring them together to close both gaps.

He asked if I agreed. I did. Within a few minutes I could see something against the beating flesh of my heart that looked for all the world like a child’s drawing of a flower. “That’s the device,” said someone. Within minutes, all the surgical staff seemed happy. So I was too. “If that was the first time,” I said to Dr Sumaya, “you should write this up.” “Oh, it’s been done elsewhere in the world,” he answered, “just never here in Nova Scotia!”

My Energy and Weight

Did I mention fatigue? A side-effect of my taking on new things constantly is that some days I find myself taking naps. Lots of naps.

Partly because I don’t eat as quickly (too much chance of biting my cheek or tongue), I’m always the last to finish my plate. I tend to eat smaller portions than pre-stroke, and weirdly for anyone who knows my predilection for peanut buster parfaits, my appetite for sugar has diminished. The weight I lost last fall seems to be staying off. I have more of a taste for salt now, and enjoy making home-made pizza!

My Prospects

Now that it’s been nine months since my stroke, I’m realizing (yet again, for the umpteenth time) that recovery is a marathon, not a dash. In fact, recovery is a pilgrimage – one which has changed me more than any of my other walks, and one that I’m still on.

Thank you for your many good wishes, and for the support I still feel, and that still keeps me going. Just the other day, I heard voices at the door as I took a rest. It was the greenhouse crew that a year and a half ago, put in “Sara’s Forest,” the 50+ trees planted for her big birthday. They’d come to check on the trees…and to check on me!

My Birthday!

It was my birthday on May 30th – the BBQ was an unexpected present from Sara’s folks. Sara got me a lovely (made in BC) teak shower chair. Now I can take the old plastic one back to the Red Cross!

Another gift is how I keep seeing my book Someone Else’s Saint in local and national bookstores. In July I’ll be having a signing at the Curious Cat bookshop and an author meet-and-greet in Dartmouth.

My birthday made me realize yet again how grateful I am to still be here. And grateful, too, that so many of you care enough to accompany me on this ongoing journey through stroke.

Thank you. I know how fortunate I am!

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stroke-recovery

Six-Month Strokeaversary: Signs of Spring

Wow. Hard to believe it’s been six months since a shudder ran down my left arm and I found myself unable to speak for a couple seconds and Sara called an ambulance and ran for the aspirin.

And…the TIA and major stroke and everything that followed.

When I was wheeled into St Martha’s Regional hospital on a stretcher last September I had no idea it would be home for three months. Autumn was just beginning.

Now here we are at the spring equinox, six months later. The day before spring, the ice came off our little inlet, and those annoying fake ladybugs are waking up all around the house.

The solar panels we had installed last fall are finally free of snow and making power (I check them compulsively).

The seedlings we planted last year have survived.

All signs of spring. Another sign: I’ll have to learn how to tie my shoes again, since pull-on winter boot season is nearly over.

Here’s what else is happening…

My Heart Procedure

I had a pre-op appointment in Halifax last month, and Sara and I used our rare visit to the big city to have a date at IKEA (how romantic!). We then bought a car-load of groceries we can’t get in Antigonish at the surprisingly-well-stocked hole-in-the-wall that is Big Ray Convenience and Asian Store in Dartmouth.

During the appointment the surgeon teased us about being professors and grading him – but we said he already got an A+ just for taking me on. The procedure to close my PFO (Patent Foramen Ovale) will take place in a few weeks, in April. It involves inserting a soft metal “umbrella” into my heart through a tube inserted in my groin. (Really looking forward.) Once in place, it expands to close the hole in between the upper chambers of my heart (for explanation see here). Of course I’m nervous. But I’m thankful it’s considered a low-risk procedure, with recovery times of only a couple of days in most cases, and well worth it for the significant reduction in future stroke risk.

Bad Timing for the Someone Else’s Saint Party

Someone Else’s Saint: How A Scottish Pilgrimage Led to Nova Scotia is coming out within the month (mid-April). It won the Pottersfield Prize for Non-Fiction last year before it was published, and the prize was publication! It’s about walking the Whithorn Way in Scotland only to find a strong connection to its saint (Ninian) right here in Antigonish, then inaugurating a new Ninian Way in Nova Scotia. I’d already arranged for a launch at the wonderful Antigonish Heritage Museum. To my delight, 2024 Canadian Traditional Musician of the Year Mary-Beth Carty had agreed to play a couple songs during the evening! But when I got the notice from the hospital about my procedure, of course it turned out to be the day before the launch. Drat. So keep your eyes peeled for an announcement once I find a rescheduled date! Fingers crossed it will still work for Mary-Beth Carty!

Flu and Field Trip

This last month I caught the flu. It really knocked back my energy … and my stroke progress. Fortunately, Sara quarantined in the other end of the house and sanitized like a surgeon and didn’t catch it, and nursed me back to health over the week or so when I was most affected. I recovered in time to lead our team-taught StFX Religious Studies class “Intro to World Religions” on a field trip to Saint Ninian Cathedral, where Father Danny MacLennan seemed delighted to welcome a gaggle of young people, and even took some brave souls down to the crypt “where the bishops are buried.”

Hearts in Motion

Twice a week I drive to town, park at a handicapped spot on campus, and spend an hour at the gym with about ten others, as part of a public health program called “Hearts in Motion.”. The others are there post heart attack or heart surgery, mostly: as far as I can tell, I’m the only stroke survivor (I’m the only participant with partial paralysis…trying to do the “windmill” warm ups with my left arm). I didn’t know what to expect starting out, but going to the gym has been great for me. The first weeks I couldn’t even get on the elliptical machine, much less use it. Now it’s my favourite. I can actually hold the moving hand grips, and release the left one and grasp it again mid-step (sometimes). The program’s physio suggested I try the rowing machine. I was doubtful – I’ve never liked that device. But he was right: the pairing of my left and right arms that’s necessary for “pulling back” the rope and handle seems to be very good for training my affected left arm to stretch and reach. There are only four more sessions, so I may have to get a membership for spring and summer just to keep up on the machines. I’m still incapable of running, even very slowly, on a treadmill. I’d trip and fall. But I’m more and more tempted to try, just briefly…

Left Leg and Foot

I’m fortunate that the Physio and Occupational Therapist outpatient departments at St Martha’s hospital are still keeping me on. They say they keep seeing progress, and tell me I’m unusual (I think in a good way?). At my most recent strength and flexibility test, the physio told me that I’ve recovered close to normal strength in my left leg. “But I still have quite a limp,” I told her. “You can see that.” “That’s your brain,” she replied. “At some point it may get back to automatically lifting your foot and adjusting your gait. But there’s no way of knowing when that might happen…” I’m hoping this is like a pilgrimage path in Scotland that I was on with Ken Wilson and Christine Ramsay. Our guide at the time told us: “Use is the cure.” The other evening some great music came on and Sara and I had a quick dance. At the end of it she was laughing: “that felt like before your stroke,” she said. “You were leading like the old Matthew!” Ahhh….that’s what I’m aiming at.

Left Arm and Hand

My use of my left hand continues to improve….but very, very slowly, from my perspective. My guitar chording continues to get better: now I can play E,D,A, and G with minimal help from my right hand. But it’s slow, and my strength in pressing down the strings sometimes lacks. I gave up entirely on trying to type with it. I’ll have to get back to that.

Janna, my wonderful therapy aid at St. Martha’s, makes me attempt to move clothespins from a steel wire as a strength exercise for my left hand. But what I enjoy most is playing catch with her! I’ve gotten to the point where on a good day I can catch a gently tossed tennis ball with my left hand, against my stomach, several times, and often succeed in tossing it back, although sometimes my hand won’t let the ball go.

The issue with my hand is what is called “tension” or “spasticity.” My fingers will be loose until I squeeze something (say, toothpaste). Then, instead of loosening again, my fingers stay curled – locked! Sometimes the best technique is to ignore the hand briefly, until the fingers relax again on their own. It’s a bit like trying to fool your own brain. The spasticity seems to be diminishing. But it’s a slow process.

Poetry and 2025 Saskatchewan Book Awards

My first submission of my “stroke poetry collection” went nowhere, so I’ll be editing the poetry and trying again. But yesterday I got great news that really lifted my spirits! My memoir The Good Walk: Creating New Paths on Traditional Prairie Trails is shortlisted in the “Publishing” category for the 2025 Saskatchewan Book Awards! On May 9 there will be a fancy awards ceremony in Regina, with the lieutenant governor in attendance. For now my cardiac doctor is telling me no travel. But I can’t wait for May! I’m trying to get my brother Mark, who lives there, to go in my place JUUUUUUUUUUUUUUST in case there is an award to accept.

The End of Term Approaches

All of the hospital staff seemed shocked that I planned to go back to work upon discharge. I don’t regret going back to teaching so soon. But now that the term is winding down I’m realising just how much energy it’s taking for me to go to town four days a week for teaching and physio (and, of course, I’ll stop by the grocery store or Canadian Tire often as well). The OT consultant from Halifax couldn’t believe my weekly schedule. “Of course you’re not getting through all your home exercises,” she said. “When would you do them?” Her main advice to me was to take it easier, especially after I developed frozen shoulder in my right arm last month. Sara declared the dishwasher (reaching down to load and reaching up to put dishes away) off limits and slapped a hefty 100-dollar fine on any disobedience!!! (I only made that mistake once.)

So taking it easy is part of my plan for spring. I’ll take inspiration from the Christmas cactus Sara bought me last fall for the hospital. It budded at Christmas. But in the end, no flowers materialised. Only now, after the equinox, at home, are the blooms coming.

I pray that in your life and mine, there will be delicate beauty developing in its own time this spring. In a world where small, powerful men seem so determined to distract us from their greed and incompetence by emphasizing division, brutality, and ugliness, may we be like this Christmas cactus: blooming boldly, especially where and when it is least expected, and most appreciated.

Categories
stroke-recovery

Week 13 Strokeaversary: Honourable Discharge

Patience, patience, patient … now hurry up and go!

After 13.5 long weeks in the stroke unit at St Martha’s Regional hospital, my discharge yesterday seemed to happen all at once.

My overall progress has been overseen by the kind and professional Dr. Mary Gorman, Lead Physician. But this week’s physician on ward was the equally empathetic and soft-spoken Dr. Aaron Bates. In the morning, he stopped by to discuss last-minute tweaks to my meds.

He passed on a warm greeting to Sara, we shook hands, and he left.

Then, in quick succession:

a/ Thursday’s nurse, whom I know less well, immediately appeared to fill out discharge forms. She insisted on asking a long list of prescribed final check questions like: “what year is this?” and “Where are we right now?” despite the fact we’d been chatting in some depth about about provincial and federal healthcare politics only moments before.

b/ Physios Lee and Lena, and occupational therapists Lori and Ria (below) entered as if on cue with a barrage of January out-patient schedules, transit options (a mobility bus for 8 dollars a trip), prescriptions for equipment (a bar for the shower, a walker, and an electric shock device), and homework. (As well as for final hugs.)

c/ The hospital pharmacist sat down with me for a long consult and prescription check. We ditched the diuretic (for swollen ankles) in favour of a tweak in blood pressure meds. I’ll be on “baby aspirin” for the rest of my life.

d/ Like clockwork, “Ed” –an 80-year old more recent stroke survivor with a dry sense of humour– was wheeled over to inspect his future private room. (I’m glad he’ll be able to start getting the rest he’ll need to recover.)

e/ The cleaning staff started lurking around my doorway with mops and rags, asking if I was done packing up. (I clearly wasn’t!)

f/ One-handed speed-packing! I wonder if I’m the only patient at St Martha’s to have stripped their own bed on discharge? Sara was detained trying to get her final grades in by the deadline. So, motivated by the sidelong looks of the cleaning team, I went into one-handed high gear. All the hard work Sara put into making my room the most serene and comfortable place in the hospital was unravelled in minutes. Framed photos of our family and cats, Christmas quilts, twinkly lights, plants, a knitted prayer blanket, extension cords, spices, local teas and honey, books, earphones, a huge Christmas wreath, all my wonderful get-well cards … everything got stuffed into big blue IKEA bags for shlepping to the car. Sara was en route, but I didn’t wait. Everything got wheeled on my walker to the lounge. The cleaners descended like a flock of sanitizing vultures.

Processing…

“The goal of healing is not a papering-over of changes in an effort to preserve or present things as normal. It is to acknowledge and wear your new life – warts, wisdom, and all – with courage.” ~Catherine Woodiwiss

By the time I caught my breath, Sara and I were speeding toward Pomquet. Home! Once over the threshold (she didn’t carry me), she declared, “no more weekend passes — this time you get to stay!” We sat and reminisced about how she ran for aspirin way back on the night of September 16 when I mentioned the funny feeling in my arm. We marvelled at how far away that feels now. We were in the same chairs as back in September, but so much had changed. I guess a person might have predicted what happened next, but I was caught by surprise. I broke down completely and wept. Big, heaving, messy sobs.

Both Sara and I have been 100% focussed on “getting through” and staying positive for each other. We haven’t had a moment to process. The reality is that a major stroke destroyed part of my brain in September. The reality is that I now have a decreased range of mobility and an increased sense of mortality. The reality is that, between a pandemic, and a slow and frankly, sneaky privatization of public services for profit, our healthcare system is weakened. If I’d had a family doctor instead of a pharmacist, whose ability to adjust my blood pressure drugs when it was soaring out of control the last couple of years was extremely limited, things might have been different. The pharmacist urged me to go to emergency if my blood pressure hit 165, but because it happened frequently and I felt okay, I didn’t. I felt I didn’t want to take resources from people in a “real emergency.”

The emotional/grief work of processing the life changes resulting from the stroke is still largely to come. For my part, once I hit bottom and got over the terror of the initial 48 hours when more and more of me was disappearing, there was no time to fret. I understood that all my energy had to go to the things that would bring about maximum recovery. I knew I had to:

a/ work as diligently and proactively as possible with the physio and OT team during the crucial early post-stroke period

b/ do everything I could to present myself to nurses, doctors, physios, and other staff as someone to speak to, not about (the latter is distressingly common). As soon as I could, I got out of my Johnny shirt and jammies, and began getting dressed “normally”. Sara instinctively sensed this concern too, and brought a collection of books to my room first thing. Just like at home.

As those of you who’ve been in hospital for any length of time know, staying focussed and advocating for one’s needs becomes its own full-time job in a hospital. Even a good one like St Martha’s.

Another thing I did was to memorize and remember the names of all the staff who worked with me. This was not only important for point b above, and for my mental discipline — it was in search of the increased health and wellbeing that comes from forming relationships and connection.

Carers

“Safety is not the absence of threat … it is the presence of connection.” ~Gabor Maté

It worked. I soon came to feel like part of a wonderful team. Many of them are pictured below, but many others I’ll have to remember only in my heart, not my camera. The staff goodbyes actually went on for a few days. I presented each of my four physios with an acrostic poem of their name. There may or may not have been some tears. I gave the nursing and physio teams boxes of handsome ball-point pens. (Sara’s brilliant idea; good pens are coveted currency for hospital staff!)

I lost track of how many nurses and aides stopped by in my last two days in hospital to wish me well. Each of these folks became special to me. I learned to identify their voices at a distance, even tell who they were from the sound of their footsteps in the hall (as I’ve learned to walk again I’ve been paying a lot of attention to gait and stride).

Old Friends

“encourage one another and build up each other, as indeed you are doing.” ~Paul, in 1 Thessalonians 5:11

Through this journey, I have never felt alone. I’ve been encouraged and built up by all of your cards, letters, emails, flowers, prayers, candles, gifts, and visits.

Just a couple of days before discharge, my very last visitors were LCBI high school friend Brenda and her husband Alan. They drove up from their Nova Scotia farm to wish me well. What a pleasure it was to catch up! They were early Santas, leaving a gift bag of exquisite dried flowers, honey, craft beer, and more, all from their own Meander Farm and Brewery (a must-see on any visit to NS). What’s more, they ALSO brought Norwegian Christmas treats of lefse and krumkake (tastes of my childhood) from their neighbour and friend Deb, another LCBI friend and classmate who ended up in Nova Scotia. Wow!

Family

“Siblings: children of the same parents, each of whom is perfectly normal until they get together.” ~Sam Levenson

As if that wasn’t enough good fortune, my brother Mark and sister-in-law Barbara flew out from Regina, Saskatchewan for the whole week prior to my transition. Their goal was to take some of the ferrying, appointment-ing, cooking, and visiting load off of Sara during her end-of-term exams and grading crunch. They also rolled up their sleeves and took on the chores I’d intended for the fall and either half-finished or never got to. They helped me with some preparatory tasks, like getting a handicapped parking tag, picking up a shower seat from the Red Cross, and helping put non-slip stickers in the bathtub. I was completely spoiled. I’m fortunate to have siblings I so enjoy spending time with (even when they’re not cleaning air exchange filters and organizing the garage).

It takes a village

“Individually, we are one drop. Together, we are an ocean.” ~Ryunosuke Satoro

So: after 14 weeks in hospital, I’m posting this blog from home! I don’t know if I will continue stroke-update blog posts (at least not weekly). I’ll ease back into to blogging about pilgrimage, decolonization, or writing. But my personal strokeaversaries will go on. For example, this week the biggest change I’ve noticed is that without thinking, I find myself reaching out with my left hand to do things more and more. Even when it’s slow, I’m flipping more light switches with my left hand, and opening more doors, trying to avoid the pitfalls of “learned non-use.” Today a first was managing to undo my seat belt with my left hand. This practice of reflecting weekly so I could share updates with loved ones has been good for seeing the big picture and celebrating each success. My friends Greg and Ingrid Gust just sent me the book Stronger after Stroke: Your Roadmap to Recovery. I take hope from this line: “stroke survivors can continue to make progress years, even decades, after their stroke.”

In coming weeks I’ll remember what the physio Lee said to me: “it was good working with you. You’re a survivor.” Or Makenna, yesterday, who held me up that first day as my leg stopped working, and wiped my bum when I couldn’t: “You never stopped trying, and that made all the difference. Some folks give up. You never gave up.” What Lee and Makenna may NOT know is that I had so many of you praying, lighting candles, meditating, walking, and sending me thoughts and cards reinforcing that message: “don’t give up. You can do it” that I really felt that all my efforts simply floated atop a river of love and support.

“I’ll be home for Christmas”

“Christmas reminds us to be grateful for the gift of life and to express our gratitude through acts of kindness…” ~Deepak Chopra

So: thank you. I’m home for Christmas. Here with Sara and Sweet Pea. My youngest, Gabe, will arrive Christmas Eve. We’ll all go make a festive dinner for Sara’s family. There wasn’t time for many presents this year. Nobody minds. We know how fortunate we are.

I’ll keep working toward recovery, bouncing forward toward whatever my new normal turns out to be. If I haven’t had the chance to thank you personally, please know what a tangible difference you’ve made to my recovery. There’s a lot of emphasis these days on individual effort, “bootstraps,” and success – my recovery is a reminder that instead, what’s really important is cooperation and relationality. Each of us can do incredible things only when we’re rich with relational support.

From Pomquet, Mi’kmaki, Merry Christmas — or whatever reminder of light in the face of winter, love in the face of hatred, and salvation in the face of impossible odds that you and yours may celebrate.

Categories
stroke-recovery

Walking & Chewing Gum: Strokeaversary Week 10

This week Lori and Lee from my physio team have been keeping an eye on my left hand. It’s going on two weeks that it’s been swollen. (I promise that’s unrelated to using it to peel and grate 3 cups of carrots for my first carrot cake since the stroke.) With the swelling comes cramping of my wrist & fingers at night. “I want you to try wearing this to sleep,” Lori said, pulling out a brace that looks like a plush toy octopus. “If it hurts, take it off.”

The brace actually helps.

Reflecting on the cramping coalesced some thoughts about my left side. This stroke has caused me to observe my own body as an outsider, to put it mildly.

Here’s what I’ve noticed: at first when I started being able to almost imperceptibly budge my hand, those left-side movements required massive exertion. After we got over crying with relief that my brain connected to that hand at all, Sara and I laughed that just to wiggle my thumb a millimeter made me sweat and turn red. I had to tense my whole core like I was doing sit ups, bend all the fingers of my right hand in support, and even curl my toes. My tongue stuck out like a focused toddler. It seemed that every muscle in my body was involved in those first miraculous thumb movements!

I now think that’s because they all were.

Now that my left side has limbered up considerably, this “sympathetic movement” is still common. If I lift my left arm up, my right toe unconsciously lifts in sync.

Other mystifying aspects of my recovery seem to support this. Why did the ice bath they gave my left hand hurt so badly when my right hand could frolic like a happy Scandinavian amongst the cubes? Why, when I go to use my unaffected hand, does my left hand go into spasm? Why does it take my whole body to shake that egg in music therapy? (See below.) And why, when I yawn, does my left arm sometimes rise from my side like some unbidden ghost?

I’m calling it the “walking and chewing gum” problem. I think the reason everything moves is because, when it comes to creating action on the left side of my body, my brain is shouting at every neuron in the house. My rearranged “command centres” don’t yet know (and maybe the newly-conscripted neurons don’t know either) which of them is now responsible for, say, my third finger. So every neuron gets every order to move and they can’t all do everything at once.

Getting well, then, is not as simple as just strengthening my arm, hand, and leg. It means training a new command chain. I want the extraneous twitches to drop away. I don’t want neighbouring neurons and their muscles to jump to attention every time I scratch an itch. Increased use can also harden those apprentice neurons to things like cold ice baths!

Of course, I know that in the end, I’m fortunate my left side is moving at all! The fact that on Friday Lee had me breaking down the micro-movements in climbing stairs tells me a/ I can climb stairs, and b/ I’m at an “improving” rather than just “doing” stage thanks to brain plasticity.

Firsts!

Speaking of which, here are some of this week’s “firsts”:

1/ a belt. I can wear a belt again, mostly because I can fasten it for the first time since my stroke. Not pretty, but it gets done. Works best with pants slightly too large, which is easier these days. (No glass of wine with dinner in the hospital!)

2/ a wax manicure. Ria helped me dip my hand in molten wax. Then she wrapped it in a plastic bag and then a towel. Afterwards we all agreed that even if it didn’t heal anything, it still felt pretty darned good!

3/ zippers. After attaching a twist tie and paper clip to my winter coat I can do it up, most of the time. I never before realized that those little fabric extensions on zippers are an accessibility feature.

4/ first solo excursion. Sara was teaching Wednesday evening, but I really wanted to hear the “Women of the Antigonish Movement,” lecture by Prof. Robin Neustaeter and StFX student Sophie Gallant. So I put on my coat, signed myself out, took the elevator down to the entrance, got security to call me a cab, and off I went to the Antigonish Heritage Museum. I was momentarily stymied when the cab driver never got out to help me with my walker. But I managed to hoist it into the back of the van and back out again all on my own–another first! (No tip for this driver.) Sara came after class to drive me home. She packed the walker, and didn’t even ask for a tip.

5/ that carrot cake. It turned out perfectly, and Sara miraculously made cream cheese icing, with no cream cheese in the house! The physios and nurses got most of it, as a small token of thanks.

6/ “driving” test! This week I also took an initial driving test. Well, it wasn’t really driving, but a little plastic accelerator and brake pedal in the physio room, designed to check my reaction time. There were also some sequential logic tests on paper and an “identify the traffic signs” quiz. I passed them all without problem. This means I’m now recommended to retake the provincial driver’s exam as a one-handed driver.

7/ most importantly: for the first time this week, I can consistently raise my left index finger, and spread my left-hand fingers so I can pick up and let go some objects. I can also swing my left arm into the air and hold it there (see below). In the long arc of my recovery these are massive developments. Yet I actually used my fingers a few times before even realising it, maybe because I’ve been “visualizing” doing it all week!

Home for the weekend.

I’m also finding it somewhat easier to manoeuvre around the yard with a cane. This weekend, we planted garlic. Or rather, Sara did, under my “Green Acres” style tutelage. But I did manage to shovel a little earth, mostly just to try. A gaggle of marauding Guinea Fowls watched us. They started visiting recently, and Sara’s in love and wants to adopt them or get some of our own.

Surprise visitor.

One visitor this week was local artist and activist Sara avMaat. She had just launched her latest ‘zine project, Rat Tales, at the StFX Art Gallery. It’s a tale of two “philosophically minded” mine-sweeping rats named Wesley and Trevor, based on real-life African giant pouched rats who do this work. Since I missed the launch, Sara dropped off a signed copy! I used her previous comic, Hope Unleashed, as a textbook when I taught “Religions and The Environmental Crisis.”

Back to the “office.”

The fact that Sara and I sometimes slip up and say that I go “back to work” or even “back to the hotel” after a weekend pass is a sure sign of how at home, productive, and rested I feel in my private hospital room. Sweet Pea seems to have internalized my schedule too. Today when it was time to go back she let us know she wanted me to stay….

There are so many interesting carers at St. Martha’s I’d love to tell you about all of them. Today, Dionne comes to mind. Dionne is a thoughtful, experienced, and smart LPN who has lived in Greece and Germany – prompting us to converse about German pastries and Greek spanikopita and olives. Thursday evening she dropped by the room and said: “I need to write some kind of inspirational verse on the white board. What have you got?” I said, “Never ask a writer a question like that,” to which she replied, “That’s exactly why I’m asking you.”

When Sara dropped by after class, she quipped, “How about: ‘Well, at least you’re not dead’?” and Dionne laughed. Eventually I came up with something to share. I never paid much attention to it after that until Friday afternoon, as I was preparing to come home for the weekend. Then, one of the elderly patients was shuffling by my room with her walker. She exclaimed, “oh, look at that!” and then read the saying out loud. I’ll end with it here, since it encapsulates how I feel about all your support:

“Many hands make light work – and many hearts make good healing”

Please keep praying, meditating, and raising thoughts, especially for my hand and my shoulder … and my neurons … as I go into the final stretch of my hospital stay: I’ve been told my discharge is scheduled for December 18th! Sweet Pea will be pleased.

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Uncategorized

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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Uncategorized

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.