Again and again, Michelle pushes herself, defining and redefining the boundaries of what she can do. And although her adventures might tax Michelle’s body, they nourish her spirit. “They make me feel strong and alive,” she says. “I live with a progressive disease. I just don’t know what tomorrow might bring.” Seizing the moment means seeking out pulse-quickening stuff to do, but that’s not all it means. In fact, Michelle’s extracurricular activities are only a small part of the busy life she has built.
On a frigid crystalline morning in January, the students of Earl Beatty Junior and Senior Public School in Toronto gather for an assembly. The sun coming through the gym’s high windows makes suspended bits of dust shimmer as Michelle Amerie wheels up to the front of the room. The kids—four to 14-year-olds—squirm and fidget while Andrew, a representative from the MS Read-A-Thon, explains multiple sclerosis and introduces Michelle. But once she starts to talk—in a great big voice that doesn’t quite match her slight frame—she has every pair of eyes upon her. Rolling her chair up and down the aisle formed between the 600 kids sitting on the gym floor, Michelle uses humour and her own body to bring an abstract two-letter disease to life.
Wheeling right up to one student, she says, “If I sneeze on you, will you catch MS?” “Noooo,” laughs the little girl and a few of her friends. Then two girls a few rows over pipe up. “Do you live with somebody?” asks one. “And can you have a baby?” asks the other. Michelle doesn’t miss a beat. “Yes, I live with someone and sure, I could have a baby. But I don’t want a baby. I have fish instead.” Michelle’s light tone and smile let the kids know that they can smile at this, too.
“The children have such a different understanding when they get to see someone like Michelle living with MS,” says Valerie Weddell, supervisor of the MS Read-A-Thon in Ontario. “You can see it in their eyes.” But Michelle’s appeal isn’t bound to her illness. “There is a presence about Michelle that you don’t find in a lot of people,” Weddell says. “Seeing her address a group of kids is a pretty awesome experience.” The students of Earl Beatty clearly think so. They stare raptly when Michelle gets Andrew to help her stand up in front of her chair, they giggle when she says that she cooks using a microwave and a telephone (pizza!) and they clap and cheer when she wraps up her presentation by telling the kids that by just reading, they can make a real difference.
Michelle’s been visiting several schools each year for the past six years—and the annual event has special resonance for her. When she was a child sitting in a gym like the one at Earl Beatty, she couldn’t know that she would end up with MS; nevertheless, at age 13, she held the record for raising the most funds during her own school’s Read-A-Thon.
It was three years later, when Michelle was 16, that her symptoms began to show up. “I woke up one morning with double vision,” she says. “They thought I had a brain tumour, they thought I had diabetes, they thought I had meningitis.” Eight months later, Michelle woke up and the double vision was gone. It hasn’t been back since, but other things started to happen. “When I was 18, my legs started to drag and my co-ordination went all funny. But the problems would come and go because I was still in the relapsing-remitting stage of MS, although I didn’t know it.”