Sometimes FA Makes Me Want to Be Invisible
Sometimes we prefer not to be seen. I know how that feels. Growing up, I loved being almost invisible, whether I was pretending to be a spy or playing one 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.
Featured Post
Finding the through lines in life with FA, even as my goals change
“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds…
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I’m Right Where I’m Supposed to Be
This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the underbelly of the LSU football stadium, known by Tiger fans as Death Valley.
Introducing the Friedreich’s Ataxia News Forums
Bionews Services is launching a new project on Jan. 22: the Friedreich’s Ataxia News Forums. This will be a place for all of those affected with FA — patients, caregivers, family members, close friends, and significant…
‘Bird Box’ Is Worth the Hype, Especially for the Disabled
Spoiler alert: In this column, I’ll review the popular Netflix movie “Bird Box.” I explore the movie’s ending. If you like suspenseful sci-fi movies, I recommend watching it first, then returning to this column. Be aware that the movie…
A New Year’s Resolution I Can Keep
“What’s your resolution?” This time of year, redefinition is almost a buzzword. Resolutions and goals are a hailstorm assault on social media. As the calendars mark another complete orbit around the sun, the timing seems perfect…
A Little Gift from ‘Little Victories’
Writing this column has really been a joy for me. A significant source of worry with a progressive disorder like Friedreich’s ataxia (FA) is the difficulty of finding a job. As my…
Surviving the In-between Moments
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…
Introversion as an Excuse
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…
Finding Reasons to Stay Alive
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…
I’m Burning but Not Burnt
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…
Where the Heck Is Matt?
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…
Vacation Endings and Beginnings
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…
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