The sky’s the limit

Michelle Amerie has jumped out of airplanes, swum with sharks, scaled mountains—and faced down multiple sclerosis. Along the way, she’s learned a lot about courage, risk-taking—and what really matters

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An experience like Michelle’s is not uncommon. MS is a sometimes disabling neurological illness that affects the brain and spinal cord. Its symptoms vary greatly, but they can include visual disturbances, extreme fatigue and weakness, loss of balance and co-ordination, tingling, numbness, facial pain and more. Women develop MS almost twice as often as men, and Canada is considered a high-risk area for the disease since it occurs more often in countries that are farther away from the equator, though no one knows exactly why.

Michelle was in her early 20s when her illness was finally diagnosed. “Although it was devastating to find out that I had an incurable disease, it was also a relief,” she says. “For years I thought it was all in my head. When I found out what I had, I started to learn how I could best deal with it.”

Through sheer determination, she finished her fine arts degree at York University. But after graduation Michelle traded sculpture—her first love—for photography, which demanded less fine-motor co-ordination and strength. She was both shooting on her own and working at a commercial photography studio when she encountered her first major setback. “I had a bad flare-up and the dark rooms at the commercial studio were down a level. I couldn’t do the stairs, so I had to leave my job. At the same time, the relationship that I was in broke up. And then I had to start using a cane for safety and strength.”

Angry and badly needing to escape, Michelle set off on her trip to Europe. She spent two years travelling and studying art and pottery. Although she enjoyed the experience, Michelle eventually saw that a short-term fix would not address her long-term problem. “When I first took off to Europe I was in denial, but I realized that running wasn’t working, so I came back to Toronto.” That’s when Michelle got her apartment downtown. She didn’t notice that the MS Society of Canada was less than a block away when she picked her place, but she does not believe it was coincidence, either. “I think I am meant to be here,” she says philosophically. “My relationship with everyone there has been very healing for me.” It is certainly rich and multi-faceted: as the official spokesperson for the MS Society, she frequently talks to groups of newly diagnosed people, and she is the honorary chair of the Super Cities Walk for MS.

Michelle’s involvement with the MS Society has brought an additional dimension to her life, because it was during an MS Carnation Campaign that romance bloomed between her and Ray, her partner of eight years. Initially their association was purely professional: she had written some poetry, and he, as the publisher and editor of Abilities magazine, was interested. But when Michelle had to cancel a second meeting because of her duties as team captain in the carnation campaign, Ray surprised her by showing up at her subway station post. “I was like, ‘Wow,'” Michelle says. “I sold all my carnations and got a date, too.”

Since that first date, the pair has travelled a long way—to France, England and Israel, for example—but also within their own relationship and their understanding of each other. In 1998, it was Ray who convinced Michelle that the right tool would help her body keep up with her brain. “We were at the People in Motion show and he came wheeling up to me and he said, ‘What do you think of this?'” At first, not much, Michelle admits. “For me the wheelchair originally represented the progression of the disease. I thought it would close a lot of doors.” But because of Ray’s gentle prodding, Michelle decided to try it anyway. And she’s glad she did. “With the chair, I’m able to do so much more. It has come to represent freedom and independence.”

Ray adores Michelle for this sunny way of looking at the world. “I don’t see how you could not be attracted to her,” he says with a bashful grin. “She’s just so positive about how she manages her life. And it is quite inspiring to see how she takes the challenges that MS presents and weaves an adventure-filled and creative life.” Let’s be clear: Ray doesn’t have MS and he doesn’t need a wheelchair. “I knew that I was going into uncharted waters,” he says of the difference between his abilities and Michelle’s. “But I knew she lived in uncharted waters all the time.”