You’re climbing up a long, steep hill at the three-quarter mark of an endurance ride. With each churn of the pedals your brain says no, your legs scream and the rest of your body feels wobbly, overheated and tingly.
That, says Michael MacFynn, is what it can be like living with multiple sclerosis. He is the organizer of a new fat-bike charity race, Fatbikes for MS, taking place on February 14.
His wife, Bonnie, began experiencing these symptoms in February 2015, and she was diagnosed with MS in July. Their experience living with the disease inspired him to take on the event.
While the 50-kilometre ride is designed to be fun, it will also pit riders against a challenging course that Michael says he hopes gives participants a window on the struggles of those afflicted with MS.
“For that four-hour period, you experience what it’s like living with something that is so hard,” Michael says, “But you just need to push through, and you just have to do what you can at your own pace—similar to what it’s like living with MS.”
For Michael and Bonnie, learning how to live with MS has been a process of adjustment over the past year.
“It’s been a drastic change to our lives,” he says. “We have a new normal.”
On any given week, Bonnie might spend several days in bed, unable to get up and function normally.
“Some days she’ll wake up and nothing’s wrong,” Michael says, “And then the next day she’s exhausted again, or she’s dizzy or she’s nauseous, or experiencing nerve pain all throughout her body.”
The unpredictable nature of the disease is part of the challenge for people living with MS. While awareness and understanding of multiple sclerosis has grown over the years, it is still a mystery in some ways. No two sufferers’ symptoms are exactly alike. That can make it hard to comprehend, especially for children—like the MacFynns’ two daughters, age four and six.
“It can be such an invisible disease, it’s hard to understand,” Michael explains. “They ask, ‘Why is mommy in bed again today?’
“They’re kids though, they catch on—they see the struggles,” he continues. “And they help out a lot, actually.”
Of course, it’s not all about struggle. The Fatbikes for MS course starts and ends at Dawson Park and will have some fun river valley single-track, as well as plenty of treats to keep riders going, Michael promises, such as barbecued snacks, hot chocolate and apple cider. There will also be demo bikes on hand for those wanting to test out a new ride, and family, friends and volunteers to cheer on the riders.
In some ways, that balance of fun and struggle mirrors life for the MacFynns, too. While some days can be rough, the family makes the best of the good times when they come. Both Michael and Bonnie have been passionate bikers for a long time.
Michael is a former racer who works at Revolution Cycle; Bonnie used to ride for MS as an ambassador, in tribute to her father. Last summer, when her symptoms began making it difficult to ride, Bonnie bought an electric bike so that the family could continue riding together. For Michael, channelling that passion for biking into the cause of MS advocacy and research just made sense.
In turn, Michael hopes that the event will break new trail for the MS Society. Initially, the society was exploring the possibility of launching a winter ride, but wasn’t ready to commit for this year. Instead, it handed the event over to Michael.
While the ride isn’t an official MS Society event, money raised from the ride will go towards MS fundraising efforts for the SG Front Forks, Michael’s MS riding team. And if the event can demonstrate that there is enough interest, Michael says—he is hoping to attract 100 to 150 participants at $50 per entry—the MS Society may see fit to add the ride to its official fundraising event calendar for next year.
At the end of the day, though, Michael’s motivation is personal.
“That’s why we chose Valentine’s Day,” he says. “You could go out for a fancy dinner, or you could do something special for someone you love.”
Sun, Feb 14 (10 am)
Fatbikes for MS