Spending time: My MS journey

By François Marcotte

When I was 20, my life was like the song Hier Encore by Charles Aznavour which, roughly translated means that I was spending time as though it was infinite. But time stopped one day in the summer of 1995. I was 22 years old when I was diagnosed with multiple sclerosis.

In 2001, having more and more difficulty walking and moving my fingers, I had to drop out of my program at l’Université de Montréal, where I was finishing my master’s degree in urban planning. I went back to live with my mother who went into debt adapting her house so it would be accessible for me, and stepping up as a caregiver to me for the next 14 years. I often say that I owe her my life twice over. In 2015, I moved myself into a long term care facility in Quebec City saying, “Mom, you’ve sacrificed your retirement out of love for me. You’re 73 years old, you can rest now.”

At the long term care facility, I’m surrounded by people from a different generation, some of whom have even forgotten the names of their own children. The average age of the residents is 85, and we’re only entitled to a single shower per week. That isn’t enough for me. I’m 43 years old, my MS makes me sweat, and my needs are different than those of the other residents. The shower is not only for hygiene purposes, it also soothes my pain. When I undertook a fundraising campaign in May 2016 to pay for three additional weekly showers, I found myself suddenly thrust into the spotlight. Newspapers, TV, and radio stations all wanted to interview me. I gave a dozen interviews!

My story has been told all the way up to the National Assembly. All of this was a pleasant surprise to me, but I think that what touched people most about my story was that a man my age—a prisoner of his own body—is living in a long term care facility designed for people twice his age, and relying on charity in order to receive basic hygiene and care. The public’s generosity never ceases to amaze me; my campaign raised $33,280, which is considerably more than my original fundraising goal. I can finally purchase a wheelchair-adapted vehicle which will give me more autonomy.

Despite my MS, at 43 years old, I still like to luxuriate in spending time, albeit differently than I used to. I’m currently writing a novel entitled Tant d’hivers [So Many Winters]. It’s the story of the winters of my life—a mixture of fiction and reality. Winter is not only a season; we also have winter in our hearts, bodies and minds.

Since I can’t type using a keyboard, I use voice-recognition software to write. I speak in a clear voice, articulate well and build complete sentences. The software recognizes the context of words and transcribes speech. I’m also exploring the possibility of working with other people with disabilities to help them discover the software. And when I buy a wheelchair-adapted car, I’ll be even freer to move around as I please. My plan is to go to Kamouraska to visit with my family, breathe the salty St. Lawrence River air and dive into my fondest memories.