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.
One of my favorite podcasts had an episode titled “Quantum Refuge,” which made me think about Schrödinger’s cat. I was never a physicist, but here’s how I understand it: Schrödinger imagined a cat sealed in a box with a tiny radioactive atom. If the atom decays, poison is…
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A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as most people seem to think that sad topics should only be discussed during difficult times. In the…
As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on my new standing frame is raised, resulting in a slightly exaggerated height when I…
Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing to give a speech at the rehearsal dinner or go down the aisle during the ceremony. But I have known since college…
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. The sound of rushing wind and the rumbling of turbines intensified as I felt the front end of the plane turn skyward and we left the ground. The plane departed at…
Serena Lawrence hired me as a columnist for Bionews Services. I badgered my friend Frankie, who writes the column “Fighting FA,” into recommending me. She gave my name to Serena, who walked me through the onboarding process. I was touched by…
My phone alerted me to a text message. “Would you be devastated if we canceled this week?” It was my friend Will, canceling our weekly appointment yet again. I wasn’t upset, but understood the back-and-forth banter of our friendship. I sent…
“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 ready to take action. My mom had discovered some old feather dusters as she…
“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. The wires were connected to a sonogram, which had a screen showing black-and-white images of my…
“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…
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…
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