Little Victories - a Column by Matthew Lafleur

Main graphic for column titled "Little Victories," Friedreich's Ataxia News, by Matthew Lafleur

Matthew’s life doesn’t look like what he imagined when he was an active Cajun boy. Once diagnosed at age 11 with Friedreich’s ataxia, he threw himself into books, writing, and studies, achieving a bachelor’s degree in English and a master’s degree in mental health counseling. Writing a column at Friedreich’s Ataxia News and serving as the associate director of columns for its parent company BioNews is a perfect combination of his two degrees. He notes life’s small, often overlooked successes in his column. In progressive disability, Matt tries to notice his little victories, hoping that others notice their own … or something like that.

Rolling Toward Empathy

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…

Playing the Cards We’ve Been Dealt

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…

Choosing Our Own Identity

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…

The Zeego Tales: A Little Something Extra

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…

Keeping a Homebound Physical Therapy Routine

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…

I Am Redefining Hope, Every Day

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…

I Might Be Rare, but I Am Not Alone

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…

The Zeego Tales: A Conflicting Gift

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.

‘I’m Going to Teach You to Walk’

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…

Lights, Camera, FA!

My physical therapist Kevin pushed a sofa to the middle of the room. I positioned my wheelchair next to it and transferred onto the soft cushions. Sitting there, I rolled my wheelchair — my safety net — away from me. It’s strange being away from my chair since it’s been…

Surrounded by Heroes in Philadelphia

I looked around and grinned. Our individual values are upheld by the people with whom we surround ourselves, and that made it incredible to be there. The corner office on the 20th floor of a building in downtown Philly was a far cry from home. The…

A Scar that Exposed My Worth

Before I knew it, I was face down on the tiled floor. When I started to fall forward, seated in the handicapped-accessible shower, my arms made a last-ditch effort to grab onto the bench.  This plan failed. Without my arms to impede my crash, my forehead…

The Sound of Forgiveness

I was grateful to be around my large extended family at our yearly Christmas party. Zeego, unleashed in the huge building where the festivities took place, sniffed beneath the rows of white plastic tables. I had hoped that he would bring some holiday…

2019: A Year of Little Victories

I learned a new word this year: “mFARS,” which stands for the modified Friedreich’s Ataxia Rating Scale. The mFARS measures the overall effect of Friedreich’s ataxia (FA), rating abilities such as upper body function, lower body function, speaking, and swallowing.  Unaffected functioning scores a zero on…

The Zeego Tales: Zeego Come Home!

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. The day Zeego decided to make a break for it, the autumn air was unseasonably warm. I should have noticed that something strange was about to happen. But in the moment, I expected an…

Losing the Puzzle, Winning the Game

I took off the hood that blacked out my vision and covered my face. My friend Ryan and I were in a dimly lit room. We had 60 minutes to reunite with our friends and figure out how to unlock the exit. When time was up,…

The Zeego Tales: Letting the Light In

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. I am in my new standing frame, clumsily clicking on my laptop’s keyboard. Zeego, my service dog, is sleeping beneath me. The shades are open in my bedroom and sunlight is flooding in,…

I’m Not Finished with Life Yet

When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and I was ready to learn about it. I assumed the treatment or the cure would be expensive and unpleasant. When I discovered…

A Perfect Picture: FA Symposium 2019

Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel lobby.  Taking a group picture of people with Friedreich’s ataxia (FA) was complicated. The majority of us were seated in…

My Little Victories Are Enough for Me

Out of curiosity, I ran an online search of “Kyle Bryant,” one of my best friends. I call him the poster boy for Friedreich’s ataxia (FA), and the search results seem to agree. I scrolled past links to his employee page at the Friedreich’s Ataxia…

Phantoms and Flowers: Hades, Persephone, and Hope

A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as most people seem to think that sad topics should only be discussed during difficult times. In the…

The View from My Standing Frame

As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on my new standing frame is raised, resulting in a slightly exaggerated height when I…

The Best Man Gets His Groove On

Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing to give a speech at the rehearsal dinner or go down the aisle during the ceremony. But I have known since college…

The Zeego Tales: Takeoffs Are Scary!

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. The sound of rushing wind and the rumbling of turbines intensified as I felt the front end of the plane turn skyward and we left the ground. The plane departed at…

Honoring the Legacy of Serena Lawrence

Serena Lawrence hired me as a columnist for BioNews Services. I badgered my friend Frankie, who writes the column “Fighting FA,” into recommending me. She gave my name to Serena, who walked me through the onboarding process. I was touched by…

Longing for the Sky

“But the bird fly! I want jump off the roof!” My 3-year-old mind believed this totally. I stamped my tiny shoe. I had made up my mind and I was ready to take action.  My mom had discovered some old feather dusters as she…

Checking Up on My Heart’s Health

“The heart really is an amazing machine,” the technician mused in the dim examination room.  I was shirtless on the sterile white bed with seven wires attached to my chest. The wires were connected to a sonogram, which had a screen showing black-and-white images of my…

The Zeego Tales: Naming the Hurricane

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. “Hurricane Barry” sounded innocent enough — more like a goofy uncle than a scary predator. After making landfall in Louisiana, the hurricane was renamed a tropical storm, which is what reached my…

A Postcard from the Island of Misfit Toys

Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, even with decent grades from college and grad school. I sent out hundreds of résumés, attended dozens of job interviews, and moved…

Battling Like Sisyphus

An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, nihilistic, and ultimately negative. However, I didn’t take it that way. Through the…

The Zeego Tales: From Florida to Louisiana

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Zeego mumbles in his sleep. As I type this, he is on the floor beside my computer desk, woofing quietly and moving his legs and paws slightly. I grin,…

Breaking the System of FA

The first time I broke the system, I was thrilled. It was a high I’d never experienced before — I felt that I had been cunning and sneaky. I wanted more of this feeling. I found a new goal in life: to always reach for the impossible.

Living a Nomad’s Life

My nomadic lifestyle was always something I loved about myself. For some reason, I memorized a senior quote when I was flipping through my high school yearbook. I don’t even remember whose senior quote it was, and I didn’t know why it mattered to me so much. Looking…