The Parallels Between Living With FA and Riding My Trike
I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
After I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was desperate to make a positive difference in my future with the disease. That search led me to rideATAXIA, a nationwide program of bike rides organized by the Friedreich’s Ataxia Research Alliance. People all around the U.S. work together to raise funds and awareness to find a cure for FA.
I decided to start Team Kendall and do my part to support the organizations and researchers dedicated to finding a cure. I would do that through rideATAXIA. The only problem was that I couldn’t ride a bike anymore. I wasn’t coordinated enough to balance on a bike, let alone push my momentum forward safely for 6 miles.
I felt stuck, defeated by FA once again. Then, I researched rideATAXIA more. I learned about Kyle Bryant, the amazingly determined and charismatic founder of the program. He also has FA, but he didn’t let his deteriorating balance get in the way of his vision of riding to cure FA. He got a trike and kept right on pedaling.
So, I was determined to do the same. I bought a Catrike Pocket.
Before my diagnosis, I was a runner and a swimmer, but I was not a cyclist. I hadn’t ridden a bike since I was 12, when my friends and I would meet at the neighborhood park across the street and ride to swim team practice together. All this is to say that I had no idea how to work my new recumbent trike and its 27 gears.
When do I use low gear? When do I kick it into high gear? How do I do that? When do I make little or big adjustments? I knew nothing about my trike.
So, I took it over to a friend’s apartment. He is an avid cyclist and happily offered to help me learn how to use the trike. He demonstrated how to switch gears and gave me a crash course in cycling tips. We then practiced going up and down the ramps in his parking garage.
After my beginner lesson, I decided I would just start riding and figure it out as I went. I started riding on a gorgeous bike path through a city park that was only a short ride from my house. Ride by ride, year by year, I became more comfortable with my trike and more adept at shifting to the appropriate gear. I love having the freedom to push myself physically without the fear of falling. I like accomplishing something with my body.
As I was out for a ride this past week, I realized that living with FA is kind of like riding my trike. It’s a new challenge that can be overwhelming to tackle. We learn as we go. Sometimes, we unknowingly make things harder on ourselves by being in the wrong gear or not airing our tires properly. In life with FA, we may do this by eating poorly, not getting enough rest, not processing our feelings, not accepting help, or not exercising.
We battle up hills, coast downhill, and push ourselves on straightaways. We have good days, bad days, days when we don’t think about FA much, and days when we are incredibly consumed by it. We handle obstacles as they come. We adapt to new symptoms or limitations.
Even when we’re in the right gear, it’s hard work. We still have to push ourselves, and we get stronger as a result. We accomplish hard things and overcome so much that we might not even notice it.
When I ride my trike, I get a lot of looks. People will say, “That looks fun,” “My turn next,” or “That’s the bike I need to try!” When people see me using a walker, they often do double takes. They will say things like, “You’re too young for that,” or “I want a ride” when they see my daughter sitting on the seat. The trikes and mobility aids many FA patients depend on look different, but we just keep on rolling with it.
Life with FA is hard, but we can do hard, new, and scary things. And who knows? We may even come to love and appreciate them.
“I can do all things through Christ who gives me strength.” — Philippians 4:13