Even Though My Body Is Failing, I’m Not Hopeless
“Well look at that,” the doctor remarked, obviously impressed. The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a little…
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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Why I Choose to Use a Wheelchair
My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get up yet, but I am. With a hand…
Kyle Bryant Announces the First-ever Virtual rideATAXIA Global Challenge
Editor’s note: This week’s column is co-authored by Kyle Bryant, founder of rideATAXIA, spokesman for for the Friedreich’s Ataxia Research Alliance, and co-host of the podcast “Two Disabled Dudes.” A few weeks ago, I wrote “…
Gaining Perspective As I Learn to Tolerate Needles
“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix of pride and wonder.
A Vision Test Helped Me See the Need for Self-care
“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into a strange head-shaped contraption. I looked…
Now Is All We Have, and Sometimes That’s Enough
The clanky metallic sounds are what I remember most. Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that sound…
Rolling Toward Empathy
About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this house-turned-business sat directly…
I’m Confident rideATAXIA Dallas Will Happen in November
The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks…
Reconciling with My Past, My Self, My Dream
I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be…
Learning to Shift from ‘I’ to ‘We’
It doesn’t make sense to be this fragile, I thought, as my stomach dropped and I wanted to … fight? Punch a wall? Sob? I had no logical reason to be upset.
Playing the Cards We’ve Been Dealt
The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree branches and fields of grass…
Parallels Between 2018’s ‘Bird Box’ and the Coronavirus Pandemic
About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best able…
