Longing for the Sky
“But the bird fly! I want jump off the roof!” My 3-year-old mind believed this totally. I stamped my tiny shoe. I had made up my mind and I was…
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.
Featured Post
From fumbles to fortitude: Learning to quiet my inner critic
Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than…
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Checking Up on My Heart’s Health
“The heart really is an amazing machine,” the technician mused in the dim examination room. I was shirtless on the sterile white bed with seven wires attached to my chest.
Physical Therapy: A Lesson in Little Victories and FA
“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…
Finding a New Endeavor: Writing a Children’s Book About Rare Diagnoses
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…
‘The Lion King’ and the Circle of Life with FA
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…
The Zeego Tales: Naming the Hurricane
“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…
FA Allows Me to See Underwater and Face Its Uncomfortable Elements
“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…
Living By the Book: I Can Pursue the Joy of Reading in a Wheelchair
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…
A Postcard from the Island of Misfit Toys
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…
Battling Like Sisyphus
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,…
The Zeego Tales: From Florida to Louisiana
“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…
Breaking the System of FA
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…
