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Strokeaversary week 10: Handcamp Antigonish

Here’s a slice of hospital life from Nova Scotia:

Three elderly men, two with walkers, are standing in the hallway outside my room. “I was going to go home,” one says, “but all my neighbours are here.”

The second man, Jack, pulls out a photo developer’s envelope he carries everywhere. “Jack was attacked by a bear,” the third explains, pointing.

“Got photos?”
“Yeah, there’s five of ’em.”
“Five photos?”
“No, five bears!”

Jack hitches his pants before he regales them with the story: “I was working in the yard. Didn’t see him. He knocked me over the woodpile.” The second man takes the photo. Peers at the bear, then at Jack. “Prob’ly lookin’ for work,” he pronounces.

A visitor walks by, muttering to herself: “How many Donald MacDonalds are there in this hospital?”

Another visitor is about to walk into the room opposite when a passing orderly points to the “Contagion Precaution” sign requiring mask and gown. The woman dutifully dons a paper gown, calling out to someone deep in the room: “Donald, you’re on quarantine? You musta’ been a bad boy!”

I’ve been fortunate to hear from some of you who’ve also spent long periods in hospital. Many of your experiences were similar to mine: the frustrations of wheelchairs and bedpans placed out of reach, the fatigue and the ennui of having to strategize everything from blankets to bowel movements in ways the able-bodied don’t have to think about. The way that occasionally, new nurses who don’t know me ignore me, standing there with pen in hand to sign myself out for the weekend, and speak right past me to Sara as if I’m incapable of my own decision-making.

But there are also unique positives to being hospitalized in rural Nova Scotia. Overhearing the bear story, or Sara texting me to say she saw a bobcat at the end of our driveway on her way home one night, after her usual routine of tucking me in. What a gift to have her fussing around my room straightening things, reading to me, or sitting working alongside. (I am back into writing my Jerome project, part of my work as Gatto Chair at StFX. More than once, Sara and I have slipped and called my room, “the office”!) The atmosphere at St. Martha’s Regional Hospital is relaxed and humane; there are no set visiting hours–Sara is free to come whenever she can, stay as long as she likes, and to decorate my room with plants, lights, quilts, and art on the walls. Once last week four nurses came in just to see my room and breathe deeply. “It’s beautiful in here,” one remarked, “it’s the most relaxing room in the hospital!” I said only one word in response:

“Sara.”

Another distinction is delicious local food. I order from a small menu that includes a tasty seafood chowder that would cost quite a bit in a restaurant. You can have fresh poached haddock, or roast turkey with mashed potatoes, gravy, and cranberry sauce on demand. There’s excellent lemon meringue pie in the volunteer-run cafe. If you forget your wallet as I did one evening, they’ll just give you the item and tell you to pay it forward.

The portions do tend to be geriatrically small. Combined with the lack of snacks, butter, or oil (I’m on a cardiac diet), very few breads and pastas, and no glass of wine with dinner, I’ve lost 20 pounds since my hospitalization. All good – the weight loss puts me where I should have been anyway. But I wish it hadn’t taken a stroke!

Big news this week: I’m not moving. The Halifax rehab centre only takes Haligonians. When they learned I wasn’t eligible for “Hand Camp,” my incredible team here (Lori, Lina, Lee, and Ria, above) swung into action. Lori produced a binder labelled “Matt’s Handcamp” and teased me, “it’s going to be hard work from here on in.” My binder has daily check-mark columns for the next three weeks, with slots for shoulder, arm, and hand therapy, physio on my leg, “magic mirror” visualization (fooling the brain with a mirror image), and other homework.

Lee has started me on the “big” exercise bike and treadmill. She’s doing gentle acupuncture on my left arm. I’m supposed to take weekends off, but weekdays until discharge are dedicated to more intensive therapy, whenever they can get me in.

Lori has been researching some new OT techniques out of Japan that involve massaging and “slapping” the hand tendons alternatively to shake them out of cramps. (The hand has been seizing up a lot.) My new music therapist dropped by for the first time, getting me to tap a pen with my affected hand while he played the blues. Thanks to my friend Nadine from Montreal (herself a music therapist), for suggesting ways to use familiar music to improve my walking speed and gait!

Improvements: I can now lift my arm into the air while lying on my back and touch my right hip with my left hand (I should be good at that – it’s a disco move!) I can “curl” a one-pound barbell and raise a washcloth up to my face or under my arm, using my left hand. But I have no strength yet to scrub. I can move a cloth around a counter more freely – wiping cupboards is clearly in my future. I managed to pick up a marker and draw lines with my left hand on a sheet. Sometimes I can pick up and drop wooden blocks, although straightening my fingers afterwards continues to be difficult. Like a baby bird on its first solo flight, I’ve ventured out on my first walks down the hall without cane or walker. Sara and I danced a real two-step, and she’s doing less lifting to keep my left hand in the air. I took my first standing shower at the hospital, holding the support bar for the first time with my left hand.

Last week I had another left-side dream. I was in a large underground garage where an old muscle car, a 1970s Barracuda, had been left behind piles of boxes, old mattresses, and junk. In my dream I was putting oil into the rusted engine and trying to clear a path to drive it out. Speaking of which: not saying anyone did this, but IF a person had tried to drive their automatic transmission car just around their yard last weekend using their unaffected right hand and leg, it may have worked out perfectly! For myself, it looks like I will have to take a drivers’ test before I’ll be allowed on the roads, which makes sense.

This week is the 9th anniversary of Sara and I meeting, so she picked me up from the “office” after work one night this week and we went out to eat for the first time in months, with a Gabrieau’s gift certificate from our departmental colleagues! I was also blessed with delightful visitors: Phillip Kennedy, a fellow walker along the Annapolis Valley, Tonya Fraser, who gave me some hand-picked Labrador Tea and a stone from the local beach, Leona English, another walker and a professor emeritus at StFX, and Andrea Terry, who in addition to leaving me several blueberry-themed gifts, reminded me that it was exactly one year ago that we had so much fun co-curating Philip Szporer’s and Marlene Millar’s art show “1001 Lights”! Many thanks also this week to my friend Dr Meredith Warren in Sheffield, UK, for providing a lecture for “my” class on “The Ancient Hellenistic Novels.”

Speaking of small-town advantages, those who come to visit have to pay to park at the hospital. The whopping sum for a full day or any part thereof is … a twonie. (The first time we realised this, we laughed out loud, comparing it to big city parking costs.) While I was a little disappointed at first not to be going to Halifax for fancy therapy, I feel incredibly fortunate to be right here in Antigonish, where an entire talented physio team has taken me on as a project, and where I can focus on my recovery (and my StFX research) from such a warm and hospitable room. I am sure that much of this good fortune comes from the prayers, meditations, thoughts, and intentions so many of you are keeping up for me. Thank you!

P.S. I was surprised and very, very thankful to get the news this week that Prophets of Love: the Unlikely Kinship of Leonard Cohen and the Apostle Paul is one of three non-fiction works short-listed for the 2024 Vine Canadian Jewish Book Awards! What a gift to my spirit to receiving an honour for past writing at a time when I’m typing with one hand!

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A Room of One’s Own: strokeaversary week 9

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

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

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

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

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

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

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

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

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

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

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

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

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Left Neglected: week 8 strokeaversary report

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

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

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

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

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

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

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

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

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

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

I’m thankful.

Brain, meet hand: Strokeaversary week 7

I’m home on a weekend pass, and Sweet Pea is telling me she likes having me back. She jumped up & claimed my walker seat and looked quite pleased to be chauffeured back to the living room. (Click below image for video.) Every time I nap, she settles in right by my head. Sara thinks she’s saying: “I want you here. Not wherever you get to when you’re gone.”

The big news for me this week was not really measurable or quantifiable in any objective way. It was more of a feeling – but no less real for that. Sometime near the beginning of this week I realized I felt like I had my left hand back. Not that it suddenly recovered. I’m still struggling just as much to open my fingers, rotate my wrist, or do anything else that would help me, say, pick up a spoon. But somehow – I can’t quite define how – I now feel connected to my hand in a way I didn’t before. It’s part of my body again. A frustratingly uncooperative part of my body, maybe. But very much me.

I’ve learned I can do a lot with one hand. Even make and spread pizza dough (click on image):

This week the head physio, Lori, turned to gamification as a strategy for my occupational therapy (see videos above and below). Apparently, I’m motivated more when I have a ball to hit, a broom to sweep, or a cone to knock over. Who would have guessed? Ria had me batting at a small plastic soccer ball. Lori dumped a mix of rice on the table along with a hand broom and said: “sweep this.”

I lost my former roommate J this last week. J is a reformed brawler, and a self-professed “tough guy” who says his right hook has gotten him in too much trouble in the past. I know there were nurses and orderlies who avoided coming into our room because of his quick temper. But J liked to sleep, respected me as I respected him, and didn’t talk much. We got along quite well…even had a little pizza party to celebrate his going home. I think he benefited from my politeness with the staff, and I certainly benefited from his take-no-nonsense. This week my new roommate B arrived. B, a Vietnam veteran, is much more chatty. He likes late evening baseball games on TV, but unfortunately the poor man has to have dialysis several mornings a week. This involves nurses snapping the lights on at 5 am (once at 4) to prep him. When they leave around 6, I’ve had to call them back every time to turn the lights off again so I can try to catch at least an hour’s sleep before the day shift arrives. Through no fault of B’s, later in the day while he snores with the TV on, I’m in physio, where they remind me that my brain heals best when I stay rested.

We’re hamming it up in this photo but after every home pass it’s hard for Sara and I to say goodbye and for me to go back to the craziness of the ward. I feel I’m already at a stage where I could be discharged and probably be okay. But outpatient rehab is only once or twice a week. It’s hardly the 3-4 sessions a day with the devoted team I get by staying at the hospital. I want the rehab badly. AND I need it. So I’ll stay in hospital as long as I can. But by the end of this week I was exhausted.

The physio team really makes this place. On Oct 31st they all dressed as historical Maritime figures (like Sidney Crosby, Maud Lewis, Alexander Graham Bell, Natalie MacMaster) and trooped up and down the hall wishing us patients a Happy Halloween.

In addition to being heartened by the many of you who let me know you’re praying for me or who send me messages of encouragement (believe me, it really does make a difference), I’m thankful to Joanne, who fought off the scavengers after a departmental luncheon so a care package of fresh veggies, hummus, and brownies was delivered to the hospital, and to the folks at University of Regina Press for a card with so many different hand-written greetings, and also to Dr. Francis Borchardt, who zoomed in to give my students a wonderful guest presentation – despite being in the middle of international travels and grieving his father’s sudden passing. That was exceedingly generous, Francis.

Before the stroke I had planned a special promotion for November. Sara’s encouraging me to stick to it, with her help. I’m offering a signed copy of Pairings: The Bible and Booze (or of Apocalypse et gin tonic, the same book en francais), holiday gift-wrapped and mailed with whatever inside cover note you request, to any address in Canada, for $20 by e-transfer (to matthewndg@gmail.com) or by paypal (@MatthewAndersonBooks). A portion of every sale will be given to the Heart and Stroke Foundation of Canada. Here is the order form: https://forms.gle/U5atSZk279GXpeGx6

On All Saints’ Day (Nov 1), I try to think of those who have died during the past year or so. This year I wore a tee-shirt with a photo of my old friend Kay Rasmussen from Montreal’s South Shore. Kay is now gone, but dearly missed. I reflected again about how fortunate I am simply to be alive after my stroke, and how lucky that the stroke only took my left side mobility and that I’m recovering well. A nurse whom I haven’t seen for a couple weeks came in to my room and asked me if I was still a “one person assist” to the toilet. I said no, I can go anywhere on my own now. Seeing her surprise made me realise with a shock how far I’ve come.

THANK YOU for your prayers, thoughts, meditations, messages, and support for my recovery. I don’t take them for granted. Life is precious, our schedules and routines are fragile, and your solidarity is a treasure to me. I carry that solidarity with me each time my pass is over and I find myself walking back into my “real world” for now, the hospital.