On any typical day at my middle school, the closer you were to the bench, the higher your social status. It was a cheaply made concrete bench, painted over at least three times, judging by the multicolored paint chips littering its surroundings. Nothing separated this bench from…
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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Since writing my last column, I’ve been struggling to find hope after being denied participation in a gene therapy clinical trial. That may seem strange coming from me, since most of my writing over the years has been about the stubborn kind of hope that people living with…
Sometimes I use my introversion as an excuse. It’s safe and secure; it’s familiar not to expose myself to unfamiliar situations. I find safety and comfort in familiarity. “So what if I fall asleep and miss the meet-and-greet?” I asked my…
Drowsily and with great effort, I hoisted the top half of my body upright in the hotel bed. Before I drifted off, I groggily but sincerely asked my friend Sajid in the bed next to mine, “You ready for some real talk?” He was…
There is something magnetic and almost hypnotic about a bonfire, I thought, as the unexpected snap of a burning stick spooked us all. My small cluster of shadowy friends gathered this evening, one of the first cool fall nights in my sophomore year of college. The…
It doesn’t make sense, and I’ve given up trying to figure it out. It’s a silly video sponsored by a chewing gum company that paid a man to travel the world and film himself doing his goofy dance in 42 countries.
Last in a series of reflections on a recent vacation to Turks and Caicos. Read previous reflections here. “I began my vacation today,” Jake told me over video chat. That lazy Sunday seemed like a great start to a vacation. It was…
A continuation of a series of reflections on a recent vacation to Turks and Caicos. In this column, I take a rainy boat ride and am confronted by my uneasiness with asking for help. Read previous reflections here. ***…
In this reflection on a vacation to the Turks and Caicos Islands, I focus on time spent with my nephew Jace. Check out my earlier thoughts on traveling with Friedreich’s ataxia here. *** One of my goals on this…
In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my incredible mom. Check out my earlier thoughts on traveling with Friedreich’s ataxia here. At the resort, I found a spot where the…
First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In the cramped seat of the plane, nothing was going right. Moments earlier, in the…
“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and kitschy restaurant. My friend was used to me being melodramatic; the brutal somberness I’d conjured was juxtaposed by the checkered green tablecloth on which I…
“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing in his wheelchair. As they sat at a table in the mall’s food court, Mary had…
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