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…
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
From fumbles to fortitude: Learning to quiet my inner critic
Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than…
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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…
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…
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…
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…
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…
The Caribbean Was the Perfect Spot to Set Aside My Fierce Independence
A continuation of a series of reflections on a recent vacation to Turks and Caicos. In this column, I take a rainy boat ride and am confronted by my uneasiness…
Sunny Days on Vacation with My Nephew Jace
In this reflection on a vacation to the Turks and Caicos Islands, I focus on time spent with my nephew Jace. Check out my earlier thoughts on traveling with Friedreich’s ataxia …
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…
Reflections on My Vacation to Turks and Caicos: Traveling Ain’t So Easy Anymore, Thanks to FA
First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In 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…
The Algebra of Dating with FA: The Ex and the Why
“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing in his wheelchair.
Recent Posts
- Grassroots events, education help raise Friedreich’s ataxia awareness
- Learning that life is about taking the good with the bad
- TRACK-FA study IDs possible MRI biomarkers of disease progression
- Air travel with my service dog is well worth the planning
- The value in seeing each problem as an opportunity
