“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I hadn’t seen them in over a year due to the pandemic, and in that time, they’d gotten engaged. When they…
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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A race has ended, and this time, I lost. I want to be honest, even though honesty feels especially heavy right now. I’d hoped to win this race. I really did. I’m deeply disappointed — not the explosive kind that demands attention, but the kind that settles in like fog,…
I’m no stranger to this question, but I wasn’t the one who posed it recently. Ever since I was diagnosed with Friedreich’s ataxia (FA) in childhood, I’ve dealt with its progressively disabling symptoms, including the transition from awkwardness to quitting sports to using a wheelchair — all during puberty.
Tonight’s the big night. He’s been preparing for this moment for a long time. He will win. He has to. In about half an hour, I’d watch Damon Vincent’s first professional MMA fight. I’m not a big mixed martial arts fan. (I figure if I want to watch belligerent…
Research into my rare disorder, Friedreich’s ataxia (FA), seems to me to be on the rise. Though no specific treatments for FA exist, a wide range of ongoing studies is exploring different ways of treating this debilitating disease. It seems that scientists increasingly are taking an interest in FA.
“You ready to get crazy?” Damon Vincent, both the founder of this gym and my personal trainer, greeted me the same way he normally does before my workouts. Sometimes he uses both cheesy statements and bad puns to motivate his clients, like when he says…
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 was referred to as a “cripple.” Being called a cripple had such an impact…
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 of humor is a way of escaping my stark reality as a Friedreich’s…
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 van. It doesn’t matter if it’s someone with a sign asking for a job, food, or…
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 horse races. I swear sometimes I can even hear the gates clanging open, and the rapid-fire…
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’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 physical strength, like the rest of my capabilities, will dwindle over time much more quickly than…
“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 living with Friedreich’s ataxia (FA), I should probably be used to the unexpected by now. …
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