The First Time Someone Called Me a ‘Cripple’
The importance of words may be obvious to most, but I am gradually learning that lesson. The first time the power and weight of words struck me was the first time I…
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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Laughter Is Essential for Rare Disease Patients
As many people living with Friedreich’s ataxia (FA) can tell you, our diminishing handwriting, balancing, speaking, and walking abilities are no laughing matter. Or are they? My sense…
Why I Believe It’s Important to Look a Stranger in the Eye
I’m not proud of this, but I often avoid looking strangers in the eye. An example is when I pass panhandlers or other people asking for money while I’m riding in my…
Betting on Dark Horses
I always try to bet on dark horses. On quiet summer nights near my house, I can hear the buzzer of the nearby racetrack signaling the start and finish of…
Deus Ex Omaveloxolone: Finding Hope With an Untreatable Illness
I really enjoy the times when I can almost forget about the constant degeneration of my body due to Friedreich’s ataxia (FA). But every so often, I fall out of my wheelchair, notice that my speech is especially muddled, or face another stark reminder I can’t ignore: that my FA symptoms are worsening.
I’m Learning to See Myself as an Ataxia Warrior
I’ve never thought of myself as especially strong, or as someone who could identify with a warrior’s personality. Because I face the progressively debilitating disorder Friedreich’s ataxia, I sadly realized that my…
A Snowman in the South: Facing Rare Disease and Other Unlikely Events
“I never thought I’d see this,” I thought, looking at the surreal scene outside my van’s window. Snow-covered yards and roofs on familiar houses in my hometown were remarkable to me, although…
How Thinking Differently Saves My Life
One and one always equals two, at least that’s how most people see it. Sometimes simple, concrete facts are comforting, especially for people diagnosed with progressive diseases, where we can’t trust our own abilities…
Finding Comfort in a New Normal
“You need to go easier on yourself,” my friend told me. I was busy berating myself for having a bad week when my symptoms of Friedreich’s ataxia (FA) seemed to spike all…
A Rare Disease Day Reflection: We Aren’t Just Inspirational Tiny Tims
Living with a rare disease isn’t as simple as I thought it would be. I’ve been thinking about this lately, because on Feb. 28, the world will celebrate Rare Disease Day,…
I’m Learning to Set Measurable Goals and Plan for the Future
“If you don’t know where you’re going, you might not get there,” reads the first line of a book on my kitchen table. My bosses mailed the book, “…
The Beauty of Being Alone, and Why It’s Not for Me Anymore
I always took pride in being alone, and I still do, to some extent. That makes letting go of being alone, even just a little bit, feel so strange. What…
