music-therapy – somethinggrand

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.

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.]