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.
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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One of my favorite podcasts had an episode titled “Quantum Refuge,” which made me think about Schrödinger’s cat. I was never a physicist, but here’s how I understand it: Schrödinger imagined a cat sealed in a box with a tiny radioactive atom. If the atom decays, poison is…
“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…
Sticking to a New Year’s resolution may better our lives in the short-term, but thinking about what I will be remembered for matters more to me. So, instead of committing to a resolution this year, I am focusing on the concept of a legacy. After I am gone,…
Despite whatever successes we saw in 2020, the year mostly will be remembered for a pandemic that affected almost everyone on the planet. Though the death, financial hardships, joblessness, and isolation due to COVID-19 are devastating, humanity may find an end to this horror soon.
I couldn’t take another step. My forehead was covered in sweat underneath my dark brown bangs. I was miserable from the top of my head down to my aching legs. At 13, I hadn’t yet been considerably affected by Friedreich’s ataxia.
An old tree once stood beside a creek far behind my childhood home. It wasn’t on my family’s property, but because wild blackberries grew there, I was willing to trespass to get to the ripe berries. After eating a handful of them, I’d rest my back against the old tree…
I was thinking of egrets as I landed uncomfortably on the floor after my wheelchair brake betrayed me. Well, it wasn’t really a betrayal, but rather my own fault for kicking the brake as I turned over while I slept. A few hours later, as I was making the always…
Knowing when to accept help and when not to is a regular challenge for those of us with progressive diseases. “Do you want me to push you down the hall to the kitchen?” my personal care attendant, a family member, or a friend might ask. This…
A large, old oak tree used to grow outside my bedroom window. A few weeks ago, it fell during the bluster of Hurricane Delta. The tree crashed down while I was less than 20 feet away, yet I slept through the fall, none the wiser. (If a tree falls outside…
I intentionally fell off the treatment table. A metallic taste filled my mouth as I thudded onto the matted floor with a crash, looking less like a superhero and more like a marionette whose strings were cut. My fall was neither steady nor…
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