Author Archives: Matt Lafleur

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’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…

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…

I have no idea what I’m doing, I thought as I turned my head from side to side in an effort to provide the photographer with a variety of angles so that he might have a viable shot to work with.  He had asked…

Many trees stand stoically on my family’s property, one of which I pass each time I ride my recumbent trike. I take notice of its bark and branches more than I have with any other tree in my life. I only recently found out the name…

Moist, squelching sounds filled the otherwise silent room as the sonogram of my heart was being conducted. I was lying on my left side on the slim hospital bed, at my yearly cardiovascular checkup. One of the most important tasks to ensure the wellness of…

I have a confession to make: The part of my Friedreich’s ataxia diagnosis I used to be most grateful for has now become something I question. Is it a good thing that while the rest of my body breaks down, my cognitive function remains the same?…

It wasn’t a comfortable feeling. With every press of my physical therapist’s tiny handheld pump, the edges of a small plastic cup seemed to pinch my skin a little more tightly. I had several suction cups placed on my arms, hips, and legs.

No. Thank you for reading this week’s column. *** Just kidding! I want to unpack that question, because it is a valid one. Plus, the answer has a pretty interesting backstory. I am a columnist without any real scientific training,…

“It’s just hard to be around you,” she told me. She looked down. She hated these harsh words, too. Over time, I’d learn to accept them and even be grateful for her. One day, I’d appreciate how she didn’t sugarcoat her message.

I opened the door to my closet yesterday morning to pick out my shirt for the day. Most of my shirts are solid earth tones, showcasing how boring I am. As I scanned the hanging T-shirts, my eyes lingered on one. This particular shirt always seems…

I don’t believe I’m a lucky person. But I’m relieved that the area where I live escaped massive devastation from Hurricane Laura, which made landfall in the southern U.S. last week.  Videos like this show the destruction Laura caused in Lake Charles, Louisiana, just…

I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” episodes, much of the suspense and spookiness lies in the mystery. The veiled monsters are…

Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular atrophy (SMA) that will be available to patients soon. What is…

I’m not patient. Not at all.  I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, persistent, and serene in our daily activities, no matter how long they take or how much we…

I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The head instructor had me and the instructors my age do a lifeguard training exercise.

“Well look at that,” the doctor remarked, obviously impressed.  The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a little victory.  I had just swung my legs off the…

My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get up yet, but I am. With a hand on my SuperPole for balance, I…

Editor’s note: This week’s column is co-authored by Kyle Bryant, founder of rideATAXIA, spokesman for for the Friedreich’s Ataxia Research Alliance, and co-host of the podcast “Two Disabled Dudes.” A few weeks ago, I wrote “I’m Confident rideATAXIA Dallas Will Happen in November,”…

“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix of pride and wonder. One of the treatments he uses is dry needling. Neither…

“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into a strange head-shaped contraption. I looked up at the mirror and saw the reflection of a bright…

The clanky metallic sounds are what I remember most.  Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that sound echoed down the high school hallways, I knew what it…

About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this house-turned-business sat directly across the street from my college campus. I read about the…

The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks for three skill levels — 50 miles, 25 miles, and 4…

I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be me without that rare diagnosis? Maybe I can only…

It doesn’t make sense to be this fragile, I thought, as my stomach dropped and I wanted to … fight? Punch a wall? Sob? I had no logical reason to be upset. Yet, when I overheard a longtime friend on a phone…

The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree branches and fields of grass whizzed by — vibrant, springtime green. The sky overhead was crisp…

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…

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.