Little Victories - a Column by Matthew Lafleur

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. …

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 day-to-day. But I believe my ability to thrive depends on being able to see the world…

“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 at once. I did stop blaming myself, as my friend suggested. Instead, I thought…

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, a day for spreading awareness about those living with rare diagnoses, who often have disabilities.

“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, “Measure What Matters“ by John Doerr, to me as a reading assignment. …

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 does “taking pride in being alone” even mean? My rare disease, Friedreich’s ataxia (FA), was probably…

My arms couldn’t hold my body up in a crawling position any longer, so I face-planted on the matted floor in defeat, yet with a small, self-satisfied smile. As I lay collapsed on my stomach, my physical therapist towered above me and yelled triumphantly, “You just crawled across…