Author Archives: Matt Lafleur

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 message from that week has stayed with me.

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 I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused on a TV with the volume either blaringly loud or so quiet that I’d have to strain to hear…

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. As I rolled through the Valley of Death, the lump in…

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 others — to sign up, post, and comment on messages about…

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 to redefine yourself, to create a better…

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 physical abilities lessen, my job prospects shrink. It would seem like…

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 multicolored paint chips littering its surroundings. Nothing separated this bench from…

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 if I fall asleep and miss the meet-and-greet?” I asked my…

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 mine, “You ready for some real talk?” He was…

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 first cool fall nights in my sophomore year of college. 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 world and film himself doing his goofy dance in 42 countries.

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 Sunday seemed like a great start to a vacation. It was…

The Mother of Vacation Origins

In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my incredible mom. Check out my earlier thoughts on traveling with Friedreich’s ataxia here. At the resort, I found a spot where the…

Learning to Live in the Present

“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and kitschy restaurant. My friend was used to me being melodramatic; the brutal somberness I’d conjured was juxtaposed by the checkered green tablecloth on which I…

Daydreaming and Other Ways of Coping

“Don’t hold a glass over the flame/Don’t let your heart grow cold/I will call you by name/I will share your road.” –Mumford & Sons. “Matt?” my professor repeated for who knows how many times, interrupting the imaginary…

FA Progression and Childhood Spies

In my memory, we were always lithe and sure-footed. Two shadowy cat burglars, but with no inclination to steal. So, not burglars; we were spies. Spies! My aunt and uncle and their kids arrived at my house one Saturday. Our families got together almost every weekend…

I’m Still Pedaling to Keep My Oath

I gritted my teeth. The August sun in south Louisiana pounded unrelentingly onto my head. Drops of sweat trickled down from my hairline, along the sides of my face. I’ve never really sweated very much, but since I started regularly riding a recumbent tricycle, I’ve found…

Finding the ‘Why’ and Bearing the ‘How’

Reminders of life’s beginning and end kept cropping up unexpectedly this week. My 4-month-old niece was baptized, initiated into her parents’ faith, and began a journey. Days later, I heard from an online friend that his son died of complications from FA last year. A few…