I’ve Learned to Face My Reality While Hoping for an FA Cure
I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed the pill laid out for me and rushed to the bathroom to finish…
Little Victories — Matthew Lafleur
Louisiana native Matt Lafleur’s life today isn’t what he expected back when he was an active Cajun boy. After he was diagnosed in 1994 with Friedreich’s ataxia, a slowly debilitating disorder with no treatment at the time, he more or less lost hope. Despite his hopelessness, he achieved degrees in English and in mental health counseling. Writing this column at Friedreich’s Ataxia News and serving as the culture coordinator of its parent company, BioNews, combines his two degrees perfectly. Maybe he’s not quite as hopeless as he thought. In progressive disability, Matt tries to notice his little victories, hoping that others notice their own … or something like that.
Featured Post
My dad’s perspective on 2 of his 3 children living with FA
From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort. That’s why I’ve been asking…
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An FAer’s Reflection on Rare Disease Day
The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood was thankful. The details of that Sunday night in 2018 may have blurred in my memory, but the overall…
I’m Both an FA Patient and a Cajun During Mardi Gras
I find it easy to identify myself as a person with Friedreich’s ataxia (FA). In light of the significant effects that FA has on my life, I have no problem acknowledging myself as “Matt Lafleur, a…
The Anchor on My Wheelchair from My Steadfast FA Friend
A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down the anchor’s stem and “FA” at its base.
In the Waiting Room with FA
Before I had a smartphone to help me pass the time, I was OK. I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused on a TV with the volume either…
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…
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…
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