I’m still learning how to get busy living in life with FA
“This might be even better than a Kubrick,” I thought as “The Shawshank Redemption” appeared on my screen. I was FaceTiming with my manager, Ethan, and his son, who live in upstate New…
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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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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Thinning hair and other signs of aging are a mixed blessing
My hair is finally the way I like it. In the world of Friedreich’s ataxia (FA), I celebrate every little victory that comes my way. I grinned — cheesily, vainly — as I…
In the breath between waiting and knowing, I feel hope and fear
There’s a distinct stillness in waiting — a breath held between hope and reality. As I’m writing this, my May 13 appointment is approaching, and I find myself suspended in this limbo, where the…
When faced with health challenges, I aim to be resilient
Note: This column describes the author’s own experiences with Botox injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living with Friedreich’s ataxia…
Finding ‘Flow’ in the currents of life with FA
Navigating life with Friedreich’s ataxia (FA) involves traversing an unpredictable landscape where each step presents new challenges. This year began with particular frustration for me, yet I find solace in the unwavering support…
‘Almost FA-mous’: The sky’s the limit for FA awareness
I recently watched “Almost Famous,” a comedy film from 2000 that portrayed the fictional story of a music journalist and a rock band that longed for recognition. I didn’t expect the movie to remind…
Though my diagnosis was difficult, I decided to write my own story
When I introduce myself, I always say: “I’m Matt, and I have Friedreich’s ataxia.” It’s not just a fact; it’s a part of the story that’s shaped me. Part of me can’t stand…
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…
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,…
Writing a children’s book about FA, now soon to be published
Why did I write a children’s book? I’m not sure, but I know firsthand that being diagnosed with a rare disease is profoundly isolating. Because I didn’t feel I could voice that at the…
The misguided miracle cure that kept me going
Years ago, I wrote the column “Becoming the Miracle We Seek,” and I’ve been reflecting recently about its portrayal of an early part of my journey, when I wanted prayer to…
