“I think you got this,” Dr. Landreneau told me. I didn’t know how to respond, and I was too worn out to, anyway. I graciously sipped through the straw in the cup of water he held for me, and silently accepted the two fun-size bars of…
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…
The day I got my big idea, I received a package in the mail. Other than that, it was an average, unremarkable Tuesday. Speaking of unremarkable, the package itself was just that — a thin, brown, rectangle of fraying cardboard, about the size of a throw…
My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family who wanted to see the 2019 remake of Disney’s “The Lion King.” Andrew wanted to see it because, well,…
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. “Hurricane Barry” sounded innocent enough — more like a goofy uncle than a scary predator. After making landfall in Louisiana, the hurricane was renamed a tropical storm, which is what reached my…
“I’d give all of my degrees to write as powerfully as Melville,” Dr. Cicardo mused. She had read a passage from “Moby-Dick; or, The Whale“ aloud to her small college class. She reminded me of a proud songbird who recognizes the beauty…
My unease kept growing on the first day of this evening class during my third semester of college. The professor hadn’t shown up yet, so we were a small group of seven or so students sitting around a long table in a small classroom in Griffen Hall, the…
Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, even with decent grades from college and grad school. I sent out hundreds of résumés, attended dozens of job interviews, and moved…
An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, nihilistic, and ultimately negative. However, I didn’t take it that way. Through the…
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Zeego mumbles in his sleep. As I type this, he is on the floor beside my computer desk, woofing quietly and moving his legs and paws slightly. I grin,…
The first time I broke the system, I was thrilled. It was a high I’d never experienced before — I felt that I had been cunning and sneaky. I wanted more of this feeling. I found a new goal in life: to always reach for the impossible.
My nomadic lifestyle was always something I loved about myself. For some reason, I memorized a senior quote when I was flipping through my high school yearbook. I don’t even remember whose senior quote it was, and I didn’t know why it mattered to me so much. Looking…
Those days were sticky hot. Or, at least, that’s how they are in my memory. I made my way to the backyard; the bright green of the summer grass gave off a sweet scent, and the nearby clothesline stood at attention, though the poles that held it up…
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