My feet were clipped securely into the pedals and my helmet was snug on my head. Friends and family in attendance flanked me in our army green tees.
“The Fellowship of the Ride” was my team name, displayed in gold on the front of our shirts. On the back was a J.R.R. Tolkien quote from the first book in The Lord of the Rings trilogy, “Faithless is he that says farewell when the road darkens.”
The rideATAXIA in Dallas on April 1 was the first event I attended within the FA community. Bearing a rare disorder such as Friedreich’s ataxia tends to be isolating. As physical limitations gradually increase over time, we sufferers are left feeling alone. “No one understands me,” I think, more times than I should.
Having melodramatic thoughts like this may not be common among all people with FA, but it sometimes is for me.
I think that the greatness of this event in Dallas lies not in the ride itself, though riding my recumbent trike for three miles was indeed a huge and fulfilling accomplishment; I hadn’t used my legs much in over a decade until I purchased my trike a year ago. Honing your abilities in a world of disability is unspeakably rewarding.
The night before the ride, there was a screening for the movie The Ataxian for all of us in the FA community there. The story of Kyle Bryant’s Race Across America hit all of us in a personal, familiar way, and it excited us to participate in the ride the next day. But even the inspiration that we and our family and friends received from the documentary wasn’t the greatest part of the event.
As I pedaled in past the finish-line, past the faces of all different people - Kyle in front of me, Mom and Dad and my team behind me, new friends and strangers cheering us on along the route, people in wheelchairs and walking, people in recumbent trikes and racing bikes - this was it, I realized. This is why rideATAXIA is special, why I’ll look back on this weekend with fondness for the rest of my life. The answer was on my shirt the whole time.
In the world of rare disorders, loneliness is commonplace. Raising awareness and raising funds to fight it during rideATAXIA is remarkable, but recognizing that we are part of a strong and compassionate community...well, that’s powerful. I’ll be back next year.
“The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it grows perhaps the greater.”
― J.R.R. Tolkien, The Fellowship of the Ring
The 2017 rideATAXIA Dallas has meant so much to me. Last year, was my first FARA event beginning my ambassadorship with FARA, and kickstarting my interest and love for the FA community.
This year, I just went as a spectator. I really wanted to check things out, and soak in the event. There were so many people to meet, and fun to be had. I got up bright and early to see the first group off, and hung around the starting line until the final person crossed the finish line. Talking to and meeting as many people as I could throughout the ride.
I then made my way to the pavilion tents for lunch. Outback Steakhouse provided some excellent chicken sandwhiches and hamburgers. All the announcements and fundraising goals, lead by Kyle Bryant, were heartwarming speeches. I still cannot believe that over $133,000 was raised from this event. The organization of fundraising and entertainment is absolutely staggering.
One of the main things that I noticed, were the people that were at the event. Everyone was so kind and generous. It was a really special vibe throughout the day, and I felt comfortable the entire time.
I always thought, going as simply as a spectator was a little odd. However, it was actually one of the most special things I've done this year. I cannot wait to get back next year. Hopefully, I can actually participate in the event and raise some money because we're all in this together in finding a cure for FA.