About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best able to survive an apocalyptic scenario. Although the real-life coronavirus…
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…
On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit or an inability to correct my balance. After the initial thud and the…
Focusing on times of plenty and excess amid the COVID-19 pandemic seems foreign, or even rude. However, this calamity and all the pain it’s wrought cannot be all we see. Its prison walls are not opaque, just murky. We must look beyond them, look past…
I’m really fortunate. My life hasn’t undergone a drastic change even though I’ve rarely left my house in three weeks because of the COVID-19 pandemic. I work remotely and don’t drive, so I’m used to spending most of my time indoors. Since I am…
Long before COVID-19, a little girl named Eula walked to the end of the road to catch a school bus. It was 1935, so her bus ride to the small school in South Louisiana lacked the conveniences we take for granted today. For example, the…
It’s finally happened: the first outbreak within my parish (or “county” for you non-Louisiana folk) has been reported at the time of writing this column. While this pales in comparison to the number of outbreaks in Seattle, New York City, and even New…
At my latest physical therapy appointment, I was out of my wheelchair and on the floor mats, struggling to maintain a “table” position. Mastering that position is the beginning of working on crawling more like a toddler and less like a mortally wounded soldier on the battlefield.
I was giddy that day, a month or two ago. So much so that I texted a friend, “Do you ever feel like everything is coming together, falling into place?” I received a text back. “Every day.” I chuckled at this response and rolled…
My teacher and my best friend’s mom talked amid the gaggle of parents picking up their kids from middle school. I was within hearing distance as they spoke, but neither one noticed. I remember my teacher remarking that the woman’s son and I used to do…
I saw one of my middle school teachers the other day. Two decades have passed since I was in her religion class. She saw Zeego, my service dog, as he curiously sniffed around the occupational therapy clinic where my friend Will works.
The sky turned pinkish and the clouds became bright blue as the Louisiana sun reached its western-most point and began to retreat from this summer day. It was five years ago. My mom’s friends had brought their 7-year-old nephew over to swim. I was playing…
I was the weird kid who asked my mom to fix me a plate of spinach as an after-school snack. Most of my friends only ate spinach to appease their parents and earn the right to dessert. Don’t get me wrong: I love cookies and cakes probably more than most…
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