I gritted my teeth. The August sun in south Louisiana pounded unrelentingly onto my head. Drops of sweat trickled down from my hairline, along the sides of my face. I’ve never really sweated very much, but since I started regularly riding a recumbent tricycle, I’ve found that I do get hot riding in Louisiana’s 90-plus-degree heat.
As much as I’d like to boast otherwise, pedaling isn’t easy for me. In my recumbent tricycle, I wear shoes that clip onto the pedals because my feet can’t stay there, a side effect of FA. The clips keep my feet where they are supposed to be, but the effort it takes to complete a full rotation of the pedals is aggravatingly tough. Making just one rotation requires a massive amount of energy and focus.
It is frustrating beyond words.
I curse myself during my rides, noting how pathetic my entire situation seems. I’ve noticed a decline in the four years since I got my first recumbent trike. It’s getting harder and harder to pedal, and my ride distance is getting shorter and shorter.
But even with the frustration, I remember a promise I made to myself. I named my trike “Oathkeeper,” because I swore that I would stay active as long as I can. (Also because of “Game of Thrones,” and because I am a nerd.) I will stubbornly keep that promise.
I am still pedaling.
It took me a while to look into any sort of adaptive sport: 18 years after my diagnosis, and 11 years after I transitioned to a wheelchair. As much as I cringe to admit it, I was ashamed of any reminder that I had physical limitations. That statement seems laughable now, but frankly, I was embarrassed that I couldn’t perform most tasks that most other people could. Rather than explore what I still could do, I sank into my lethargy. I pouted at my disability.
In my resoluteness, I found that I was hurting myself. During my self-inflicted exile, people kept moving, and the world spun madly on.
Sometime in 2014, I saw online advertisements for an event near me benefitting research for FA. The rideATAXIA Dallas is an event that raises funds for Friedreich’s Ataxia Research Alliance (FARA) by setting up rides for cyclists, including some with disabilities using recumbent tricycles.
I had no desire to participate as a cyclist, but I wanted to go as a supporter of the event’s contributions to FA research. I still didn’t want to get into adaptive sports. I was fine with my laziness and apathy, thank you very much.
But through the event, I got to know its director, Kyle Bryant.
We emailed back and forth when I requested more information about the event, and so began a great friendship. As our bromance grew, I began seeing trikes in a new way. I thought, if Kyle Bryant can do it, why can’t I?
So, I looked into getting a recumbent trike for myself. Riding it is not as easy as I’d thought it would be, but that’s OK. I don’t think I’ll be able to beat Kyle Bryant in a race — at least not yet.
In the past two years, I’ve added a handcycle to keep my foot trike company in the garage. The handcycle is another recumbent tricycle, but the pedals are rotated using the rider’s arms, while their legs remain stationary. FA has left me with much more upper body strength than lower body strength, so I greatly prefer riding this trike. Since this one is a maroon shade, and as I hope that my arms will get big from using it, I’ve named this trike “Red Hulk.” (Also because I am still a nerd.)
Riding trikes will inevitably get harder for me as FA progresses. But I’ll keep moving forward, on or off my trike. You can catch me at the yearly rideATAXIA events in Dallas and Philadelphia. As long as I can, I’ll be at that starting line, anxious to go, dreaming of lapping Kyle Bryant, and gritting my teeth.
Kyle Bryant partnered with FARA to create a scholarship to financially help any person with ataxia interested in any sort of recumbent exercise. Find out more information about the Ataxian Athlete Initiative here.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.