stroke-recovery – Page 2

This device is called a “Sara Stedy.” It’s a cross between a wheelchair and a strap-in walker. Just after my stroke 11 weeks ago, I couldn’t stand. I was a “two-person transfer.” Two nurses would use a Sara Stedy to get me up from bed so they could wheel me to the toilet. I remember how safe I felt as they carried me.

Bounce Forward

Now I’m stopping to take my own photos of Sara Stedys as I pass them with my walker on the way to the physio gym. This week, trying to find me new challenges, the physios took me to the hospital’s concrete stairwells and I went up and down with supervision. When I’m home for weekends, I often don’t bother with the walker or cane.

There were some more firsts this week – mostly subtle changes. I’m a bit surer on my feet. Using my right hand to place my fingers, my left hand stayed put long enough to make an E and a G chord on my nylon-string guitar. At home, I ventured out by myself for the first time to take some photos. Instead of ignoring my left hand, I now find myself reaching with it to flip a switch or turn on a tap. (Often I can’t do the task … but it’s worth noting that my brain is starting to think I might be able to!) I had my first full acupuncture session with a local specialist. Lori and Lee and my physio team made this “shoulder and arm” week. By the end of it I could lift my left arm in the air without help, while lying on my back. Karen, one of my supportive nurses, surprised me by saying “shake” with her left hand and I (sort of) did it.

I looked back at my journal from right after the first, smaller, stroke. I’m struck by how brief the notes are (probably because Sara was jotting them, exhausted). I notice what they don’t say: how my condition kept deteriorating, how deeply frightened I was that in my downward spiral, I’d soon wake unable to speak, or with a personality change, or in a coma.

In less than two weeks, I’ll be released back into the wild and into the care of my own Sara Stedy. I feel safe with her, too.

I know this doesn’t mean I’m “recovered.” A familiar refrain across stroke memoirs is that one does not go back to one’s “old self.”

“In the first days after the stroke, I had naively imagined that I would bounce back to being the person I had been in a few months. Meyerson’s book [Identity Theft: Rediscovering Ourselves After Stroke by Debra E. Meyerson and Danny Zuckerman] helped me realize that in life one can’t bounce back; one has to bounce forward.”

~Mukul Pandya, Stroke Onward

Reading the journal now, my overwhelming feeling is gratitude. My stroke wasn’t worse. I have a public health care system. I am surrounded with resources: personal, familial, emotional, financial, and community (folks like you) that collaborate to support my recovery.

Human Resources

I’m usually the pilgrim on the move, but for now I’m the stationary destination! Some of this week’s pilgrims included my colleague Gerjan (right, with Carly and their son Theo), who despite his heavy teaching load and precarious position, has visited me several times.

Or Tom Curry (above), the hospital’s music therapist and a local performer. I’m not sure our ward is even his responsibility. But after he heard I asked about music, Tom faithfully drops by. He asks what music I know and like, tests what I can shake the percussion egg to, and keeps encouraging me. “Ain’t No Sunshine”, “Out on the Mira” “Hit the Road, Jack.” He knows them all.

Or John. John is a north star for the entire ward. Unflappable. Always cheerful. Extremely hard-working… Checking by name on every patient, just in case anyone needs help. As Sara was taking me home this weekend, John was dashing past for an emergency, but took the time to call over his shoulder, “Hey, Sara! Can you believe this guy? Look at him go! So proud of you, Matt, so proud of you.” Once John asked if he could do anything for me, and I asked for help with a shower. “Sure, Matt,” he said, and dropped everything to assist. It wasn’t until halfway through the shower that he admitted, “this isn’t normally part of my role.” Above and beyond.

Like Phyllis. Phyllis didn’t want to take a photo. “The School of Nursing doesn’t like it.” She’s an LPN with a sunshiny face who always says hi as though to a dear old friend, lifting the mood of everyone she treats. A month ago she spent her lunch break trimming my toenails. She wasn’t my nurse this week. But she dropped by, surprising me Friday just before my weekend pass. “How are your feet?” she asked, then proceeded to kneel to take a look (my ankles are swelling from the meds). “Oh, the skin is dry! Would you mind if I put some cream on them?”

Would I mind?? What a gift! As she was walking out for her next patient she called out: “I just love feet.” And me? I just love Phyllis.

Then there’s fellow writer, academic, and walker Ken Wilson who’s been faithfully sending newsy emails nearly daily since the moment Sara announced the stroke on social media, saying it would cheer me to hear from “the outside world.” This is despite Ken’s own mad teaching, writing/editing, and grading crunch! A few days after he read last week’s blog about my trouble with zippers, these showed up on our doorstep. Thank you, Ken!

Reaping Past Writing’s Rewards

Finally, it was a week of incredible affirmation in my life as an author and academic. This feels especially gratifying during a period when I’m struggling to type with one hand.

Rubbing Shortlisted Shoulders with Naomi Klein

I found out I didn’t win the Vine $10,000 non-fiction prize for Prophets of Love: the Unlikely Kinship of Leonard Cohen and the Apostle Paul. But the book was one of just three short-listed out of 60, and the winner was Naomi Klein, for Doppelganger. Pretty amazing company!

It’s not 10 grand, but it’s certainly a prize to be considered in such company, and I will definitely encourage McGill-Queen’s to use the jury’s blurb in their marketing from now on!

2. Rave Review in Miramichi Reader

I was also floored when a Google alert informed me that The Good Walk received a spectacularly positive review by Michel Bryson in The Miramichi Reader.

3. Winnipeg Free Press Most Notable Books 2024

As if that wasn’t enough, The Good Walk also made the year-end list in The Winnipeg Free Press’s list of 2024’s most notable non-fiction. What a gift!

4. The Author Journey Weekly Livestream

I hesitated to say yes to appear this coming Tuesday with Anne Louise O’Connell on her weekly live videocast, “The Author Journey” to talk about my writing process. My speech still slurs when I’m tired. But Sara said, “that will all just be part of your story.” It’d be great to have you cheering me on there if you’re interested! Tuesday, Dec 10 2024, 4pm Atlantic (3pm Eastern) on their YouTube channel.

5. Copyedits and Cover Reveal: “Someone Else’s Saint”

To top off this flurry of reminders that writing done in the past is still at work in the present, Pottersfield Press just sent me the copyedits of Someone Else’s Saint: How a Scottish Pilgrimage Led to Nova Scotia (coming out April 2025). I had submitted it the night I first arrived in the emergency room, following the first (smaller) stroke. Sara teases me that I may be one of a very small number of people on the planet whose first task upon arriving at the hospital by ambulance is to submit a book manuscript.

I suppose this is as good a time as any for a “cover reveal”!

For what it’s worth, this is the story of the Nova Scotia Ninian Way pilgrimage that immediately preceded the stroke! Saint Ninian may have a sense of humour.

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.