The View from My Standing Frame
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…
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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Overcoming our Kafkaesque nightmare with a ‘MetamorFAsis’
I tend to find messages of hope and resilience in bleak stories. Take, for instance, my column about finding hope in the objectively depressing movie “Requiem for a Dream.” Similarly, another unlikely source of inspiration comes from Franz…
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The Best Man Gets His Groove On
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 Zeego Tales: Takeoffs Are Scary!
“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…
Honoring the Legacy of Serena Lawrence
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…
Consistency Is Key with FA — Just Ask My Crummy Friend
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…
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 ready to take action. …
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. The wires were connected to…
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 the cup of water he…
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 just that — a thin,…
‘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 Disney’s “The…
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 making landfall in Louisiana, the…
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 her small college class.
