After More Than A Decade In A Wheelchair, I Taught Myself To Walk Again

Sometimes, my favourite part of the evening is getting up from my bed and walking to the washroom. No one sees me; no one knows. It’s a secret delight I alone treasure. It’s not a long walk—perhaps less than 30 steps—but it’s 30 steps I could not take a few months ago.

I have multiple sclerosis and for almost 11 years, I have relied on my wheelchair. But at 67, I’m learning to walk again. It’s different than when I was a child; I’m using my late mother’s old walker and I know walking independently, without a mobility aid, is not a possibility. My steps are slower, and even though my physiotherapist confirms I’ll be able to catch myself if I stumble, I’m a little cautious. But I’ve never been so grateful to move in my entire life.

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Growing up in Vancouver in the late ’60s and early ’70s, I promised myself I would never become old; what I really meant was that I would never become what I considered, at that age, to be boring. In high school I’d listen to 25-year-olds—people who seemed old to me at the time—lament about how they had never done anything significant with their lives, that they had just married and settled down. I vowed to never become like that. I travelled across Canada when I was 17. Shortly after high school, I moved to Calgary.

It was a good, fun life. I took advantage of all of the opportunities Calgary’s nature provides: skiing, horseback riding. When I first felt electric shocks through my arm one evening when I was 46, I never thought I would end up being diagnosed with MS.

It began in June 2002. One evening after supper, I felt a flash of something quick in my left arm. It was so fast and so subtle it could easily be missed, but it felt strange to me and I couldn’t ignore it. I asked my mother, who was living with me, what a stroke felt like.

At first, we thought it was an allergic reaction to a medication that I’d been prescribed for what a doctor had told me was an ear infection. We headed to a clinic. My left hand felt tingly, the way it does when it falls asleep. My suggestion that I was simply worn out from a stressful time at work seemed reasonable to everyone, and I headed home.

But the next day at work, I couldn't move my fingers to type. A co-worker rushed me to the hospital. The doctor I saw there was the first to suggest that MS could be the cause of my symptoms. A CAT scan followed to confirm that I hadn’t had a stroke. A month later there was an MRI, and then a trip to an MS speciality clinic. In the meantime, my hands hurt and it was painful to lie down. In March 2004, I began to stagger and had problems directing my left leg. It was clear, the doctors said: I had MS. I wasn’t even 50, I didn’t think I was old.

From the get-go, the disease’s effects were most clear on the left side of my body. I often felt a burning sensation throughout my legs or my feet would feel like wooden blocks. I fell asleep at night wondering if they would work when I woke up. Each morning, I was surprised to learn they did.

Things changed much faster beginning in 2008. In January that year, I was rear-ended, a minor accident that exacerbated my symptoms. I fell in my dining room a month later and dislocated my left shoulder, and another fall that summer broke my left kneecap, sending me to a rehabilitation centre for three months. My short-term disability at work became long-term disability, and I never returned to my job.

I started 2011 with hopes that my symptoms would lessen. Early that year, I travelled to Costa Rica for CCSVI [chronic] therapies that involve using a small balloon or stent into blocked or narrowed blood vessels to improve blood flow and drainage from the brain—treatments that were not available in Canada. When I came home, though, I frequently developed urinary tract infections. One day while I was fighting what I thought was a UTI (I later found out it was a kidney infection), I went to the bathroom. It was the last independent walk I took. I couldn’t get myself off of the toilet, and I called out to my mother for help. I left my house on a stretcher, headed in an ambulance to the hospital, where I was transferred to a rehabilitation centre. I have not lived outside of an institution—whether a hospital, rehabilitation centre or long-term care facility—since.

I spent six months in rehab. I learned to undress myself, put myself in bed, transfer myself to a wheelchair-accessible toilet, and even walk a very short distance, but I couldn’t get free of the wheelchair. My time at the rehab centre was up, but I wasn’t well enough to return home, so I was sent to a nursing home. I felt misplaced. Most of the other residents had dementia. We each had a roommate. It was crowded. I don’t think anyone should have to live somewhere like that. I was 54 years old and I was there for 18 months.

Desperate to leave, I renovated my home to make it wheelchair accessible. This cost about $35,000, which felt like a bargain if it could guarantee my freedom. When my health-care team and I determined it was suitable for my needs and I found staff to assist both myself and my now very elderly mother, I thought my return to home was secure. But a doctor refused to prescribe the medications I needed. There was no explanation given. Confused, shocked and heartbroken, I was too defeated to protest. I still regret not getting a second opinion.

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I moved to my current residence, a long-term care facility, in 2013. It was about a week before I turned 57: I remember, because when my birthday came, I realized no one who lived around me knew me and there were no birthday celebrations. My mother had moved into the nursing home where I was previously, and I managed to have her transferred with me to the LTC. She arrived a week after I did, and lived here until she died.

I have my own room now; there’s some activities geared towards people younger than 65. It’s not home, though. There’s no way I can cram my whole life into a 250-square-foot room.

It can feel—especially during the pandemic, when restrictions confined me to my room—that I am a vibrant person shoved away into a government institution where I will one day die. But the greatest compliment a friend ever gave me was that she felt I had made a whole new life for myself in my wheelchair. When I think of it that way, she’s right. Barring global pandemics, I rarely stay in the facility for long. I travel around the city on public transit. I photograph the geese at Prince's Island Park and the animals at the zoo, and I keep working on my technique until I’m satisfied. I’ve co-authored three novels with fellow residents.

Regaining as much of my mobility as I can has always been important to me. I could never picture myself sitting for the rest of my life. I’ve wanted to walk again for as long as I’ve been using a wheelchair. I don’t want to stay in a long-term care facility; I want to live in a home of my own again. But to be able to do that, I need to improve my health. Specifically, this means increasing my mobility: learning to walk. So, that’s what I’ve been doing since 2018.

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I may not consider my current residence to be my home, but it does have a gym dedicated to physiotherapy. The staff here want me to get better. I’ve had several physiotherapists over the years because they leave to find other jobs, but they’ve all shown me that I’m not alone in my efforts. I started by learning how to transition myself from my wheelchair to my bed, or the living room chair or the toilet. To move from my chair to my bed, I moved myself so my chair was at about a 45-degree angle from my bed, and then I pivoted my body onto the bed. At the gym, I practised standing up from my wheelchair, performing an exercise called Sit to Stand to work on my leg strength; then I started taking steps, all while holding onto the parallel bars. Eventually, my physiotherapist let me walk with a walker between the parallel bars.

After that, I started using the walker in the hallways. A physiotherapist would be behind me, to keep me safe. We’d walk in areas of the building where the staff and residents don’t know me as well; that way, I can’t get distracted when they yell out their encouragement.

Then came the pandemic. The physiotherapy gym shuttered; during outbreaks. I was confined to my room. When the rest of the world reopened, I felt stuck inside, restricted more by the situation than I was by my own medical diagnosis. Then, I found online exercises for people who have MS. I started doing them in my room; even when the gym reopened and my physiotherapy appointments resumed, I spent about an hour each day working on my exercises in my room.

On November 25, 2021, I walked into the dining room with my walker. It was the first time I hadn’t used a wheelchair to enter the room. (It had been my goal to do this by Christmas Day, so I was a month ahead of schedule.) People ask me what I remember; how it felt. Honestly, I don’t remember much about it. I don’t remember what I ate at dinner, or if I settled into the blue chair in my room for a celebratory bag of popcorn after I returned from the meal. I moved my walker along the hallway, slowly, carefully placing one foot in front of the other, reminding myself that I was actually, finally, walking.

I spent the next months focused on increasing my skills. During physiotherapy sessions I regularly walk 135 feet; it takes about 10 minutes. In the fall of 2022, my physiotherapist stopped pushing the wheelchair behind me. I learned to stand at the sink and in the shower. I’ve worked on climbing stairs and can now transition myself into cars, which makes it easier for friends to pick me up to drive me to church or to their homes for visits. I spent Christmas Day last year with some friends. Before, when I would visit, they would set up a card table in their family room, on the ground level, because it didn’t have any steps. It was nice, but it felt a little strange to be eating a full Christmas dinner on a card table when there was a formal dining room table in the house. But this year, I walked up the four steps to the main level where the dining room is. I sat down in an ordinary chair for Christmas dinner.

One thing I’ve noticed since I was diagnosed with this disease is how easy it can be to let it control every area of your life. MS is part of my life, but it’s not my whole life. I approach walking again the same way. I’m excited, and still sometimes surprised, by my progress. But I view walking as another tool for my independence and health.

I’m still getting used to sharing the news of my newfound independence with others. I used to keep my mother’s walker shoved in a corner in my room. Now, it’s out where I can grab it easily. Another walker stays at a friend’s house so that I can use it when I visit. I dream of one day moving back to Vancouver and walking by the ocean.

I don’t know if I’ll ever be able to do that. But in the meantime, I do know that I can stand up in my walker, walk out of my room and across the hall. There, on a green wall, hangs a picture of the Three Sisters mountains in the Kananaskis. It didn’t have a place when I rearranged the artwork in my room, so the staff let me hang it here. I look at the peaks. I think of how learning to walk to this photo has been harder than climbing a mountain. There are more mountains to climb. But what I can see from this part of my journey is still beautiful.