rideATAXIA Dallas Was My Last Time Riding — Until Next Year

The long drive back home was uneventful as the sky shifted from a clear blue to an ominous collection of thunderclouds. If it was a metaphor, I was too tired to notice. We drove on.

I asked my buddy Ryan, who was driving my van, what his favorite part of our short trip had been. We had attended rideATAXIA Dallas, an annual fundraising event for my disorder, Friedreich’s ataxia (FA), on Nov. 6. It was my fourth time riding in the event on my recumbent trike.

I liked Ryan’s answer: He liked witnessing the balance of emotions among the large gathering of FA patients and their family members.

Hope was tangible at an event that raised over $160,000 for FA research. A strong sense of community was evident as patients and family members met others like themselves.

But an inescapable sense of sadness also was recognizable, as FA’s debilitating consequences affect each patient differently.

I was struck by Ryan’s observation about a symphony of emotions at the event. I wholeheartedly agreed with his assessment, but didn’t say much. I just stared at the flat landscape as we drove on, heading into stormy weather.

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Despite the Storm, rideATAXIA Dallas Was Worth It

Learning about this event in 2016 was a pivotal moment in my life. Friedreich’s ataxia shifted from an unfortunate, inescapable part of me to an adversary I could actively fight against. FA often seems unstoppable, and it has taken far too many lives. After years of seeing myself as only a helpless victim, fighting back felt good.

Even so, FA still terrifies me. Like boggy quicksand, it continues to swallow me. It’s already taken away my ability to run. To walk. To speak clearly. To cut steak with a knife. To handwrite. And without some kind of medical intervention, its disabling effects will continue to worsen.

As I pedaled down the course, I sadly noticed that it was more difficult this year for me to ride a recumbent trike in a straight line, brake proficiently, and smoothly move my hand from the brake to the handlebars.

“This may be the last year I am able to ride,” I thought. FA progression is an obvious fact, but it’s also a heartache I’ll never get used to.

But my gloomy, self-centered thoughts were interrupted by the sight of my sister, Morgan, who also lives with FA, pedaling her recumbent trike next to mine. This was her first year participating in rideATAXIA. Seeing her example of living in spite of FA’s effects shook me out of my negative thoughts.

Right then, on my rickety trike, surrounded by other riders and in view of the FA community cheering us on from the sidelines, I made a promise to myself. If and when I can no longer ride independently, I will still attend the rideATAXIA Dallas event to watch and support others. Regardless of my own progression, the FA community has a disease to cure. And I plan to see it happen.

Even when the journey includes stormy weather up ahead, let’s keep going.

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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.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.