Self-criticism Silences My Authentic Self
For some reason, the huge tome of American literature that served as my textbook for high school English always opened to the poem, “For the Dead,” by Adrienne Rich. Probably because the…
Little Victories — Matthew Lafleur
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, BioNews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
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Here we are, these dark horses, defying the odds
“Friedreich’s ataxia.” After long months of visiting different kinds of doctors all over my home state, those were the words the neurologist uttered. My family and I had desperately sought a medical reason why I’d begun to doubt and…
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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…
I’m Learning the Balance Between Giving and Receiving
“This isn’t a good start to the trip,” I thought while trying not to topple to the floor. I’d missed my wheelchair seat while trying to transfer into it. I was at the Lafayette Regional Airport in Louisiana,…
Coyotes, Roadrunners, and a Cure for My Rare Disease
Sometimes holding on to hope looks a lot like desperation. I’ve been dealing with the unstoppable progression of my disorder, Friedreich’s ataxia (FA), for most of my life. Since there is no treatment or cure for FA yet,…
Social Distancers and Rare Disease Patients Can Learn From One Another
Although I believed that the COVID-19 pandemic was beginning to wane, the delta variant has caused a huge increase in cases. Social distancing and mask mandates are on the rise again, much to my disappointment. The U.S. Food…
How I Hiked Down the Grand Canyon in a Wheelchair
“Are you sure you’ll be OK?” my three friends asked after they sat me on a picnic table, pen in hand and journal before me. It was 2006, and we were on spring break. The late afternoon sunlight wasn’t…
Sometimes I Just Want to Be Average
Everyone could see me grimacing uncomfortably. “Here we go again,” I think as I feel an uneasy lump in my stomach. I find myself back in 1999 in a recurring, unpleasant dream I have every few months. In the…
rideATAXIA Philadelphia, FA Symposium Offer Opportunities to Connect, Raise Funds
“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I hadn’t seen them in over a year due to…
Do People Want to Hang Out With Progressive Disease Patients?
I’m no stranger to this question, but I wasn’t the one who posed it recently. Ever since I was diagnosed with Friedreich’s ataxia (FA) in childhood, I’ve dealt with its progressively disabling symptoms, including the transition from awkwardness…
Like an MMA Fighter, I Won’t Give Up When Things Get Uncomfortable
Tonight’s the big night. He’s been preparing for this moment for a long time. He will win. He has to. In about half an hour, I’d watch Damon Vincent’s first professional MMA fight. I’m not a big mixed…
Keeping Hope Alive With New Treatment Research
Research into my rare disorder, Friedreich’s ataxia (FA), seems to me to be on the rise. Though no specific treatments for FA exist, a wide range of ongoing studies is exploring different ways of treating this debilitating disease.
I’ve Found a Place I Belong at Unique Fitness
“You ready to get crazy?” Damon Vincent, both the founder of this gym and my personal trainer, greeted me the same way he normally does before my workouts. Sometimes he uses both cheesy statements…
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