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.

Why I’ve decided to see a mental health counselor

Note: This column includes a mention of suicide. Resources for help are listed at the end. I grew up with an unwritten rule that wasn’t taught by my parents but seemed to be what society expected: “Whatever difficulties you face, keep them to yourself. Everyone else has enough difficulties to…

As 2023 comes to an end, we’re just getting started

Bionews CEO Chris Comish often repeats the phrase “We’re just getting started.” He’s said it so many times that it’s become an unofficial motto at the company. But the phrase is more than a well-wish; it’s also a call to action and a reminder to stay the course because…

Interpreting why dreams, like FA, are part of my life

When life gets overwhelming, my mind will often escape the reality before me, at least momentarily. I’m unsure if these brief internal retreats are daydreams, escapes, or the products of an overactive imagination; maybe all of them. But I’ll refer to this tendency as “dreaming” in this column. To me,…

Here we are, these dark horses, defying the odds

“Friedreich’s ataxia.” After long months of visiting different kinds of doctors all over my home state, those were the words the neurologist uttered. My family and I had desperately sought a medical reason why I’d begun to doubt and question my functioning, even as my 9-year-old peers were getting more…

My dad’s perspective on 2 of his 3 children living with FA

From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort. That’s why I’ve been asking my immediate family members to share their thoughts. My columns have…

A Perspective on FA From My Able-bodied Sister

What’s it like to be the only sibling out of three who doesn’t have a rare diagnosis? As I fumble my way through living with Friedreich’s ataxia (FA), I want to know what life looks like to my able-bodied sibling — my youngest sister, Mckenzie, who went by Kiki…

How an FA Patient Came to Play Fritz in ‘The Nutcracker’

A news article was recently shared and reshared across my social media platforms. It reported that a 9-year-old girl recently performed in an Oklahoma production of “The Nutcracker,” composed by Tchaikovsky. Typically, there’s nothing newsworthy about that. “The Nutcracker” almost always features children in its first…

Finding Hope in a Glass of Cheap Lemonade

Making free “lemonade” at a restaurant is popular with penny-pinching college students, even though it may be legally dubious. Or maybe it’s popular because it’s dubious. Here’s how it works: Step one: Order a glass of water with lemon slices. Step two: Mix the water, lemons, and a few packets…

An Open Letter to M&M’s Parent Company

Dear M&M’s, As a longtime fan of your candy, I want to say thank you. Your candy-coated chocolates have been a positive memory for me since before I could walk. The memory of my grandfather is forever tied to M&M’s because he gave me a brown bag of…

Finding Reason When Living With a Rare Disease

“So I guess the old saying ‘everything happens for a reason’ is true,” my friend and supervisor Brittany Foster said, ending her presentation. I’m still thinking about her words a month later, as I noted in my last column. We were in the middle of a “culture meeting” with…

Joining the Most Important Game of My Life

Somewhere, it’s like a whistle has been blown urging me to get off of the sidelines and into the game. Finding a treatment for my rare disorder is a lot like a professional football game. Crazy metaphor, I know. The progression of Friedreich’s ataxia (FA) ended my athletic career right…

I Can Still Walk in My Dreams

Often I’d rather dream than face reality. I reflect on this most mornings, when the sun rises enough to turn the sky pinkish-blue and my eyes flutter open. Typically, I wake up on my left side and have to turn myself over to get out of bed. But turning over…

I’m Shifting Away From an Either-or Mindset

A few mornings ago, I groggily looked up and saw my reflection in the mirror. Because my vanity is wheelchair-accessible, I can see myself when I’m brushing my teeth and fixing my hair. I see the world through two black holes. My dark brown eyes are almost completely black, so…

Becoming the Miracle We Seek

“You’re cured, Matt! You’re cured!” yelled some friends, their shouts echoing in the ballroom of my college’s student union almost 15 years ago. I remained sitting in my wheelchair following this Christian service of a popular healing preacher.  By then, Friedreich’s ataxia (FA) required me to…

Self-criticism Silences My Authentic Self

For some reason, the huge tome of American literature that served as my textbook for high school English always opened to the poem, “For the Dead,” by Adrienne Rich. Probably because the page was dead center in that hulking paperback book, that poem…

I’m Learning the Balance Between Giving and Receiving

“This isn’t a good start to the trip,” I thought while trying not to topple to the floor. I’d missed my wheelchair seat while trying to transfer into it. I was at the Lafayette Regional Airport in Louisiana, and the only bathroom beyond the security checkpoint wasn’t even close…

Coyotes, Roadrunners, and a Cure for My Rare Disease

Sometimes holding on to hope looks a lot like desperation. I’ve been dealing with the unstoppable progression of my disorder, Friedreich’s ataxia (FA), for most of my life. Since there is no treatment or cure for FA yet, nothing stops it from ravaging me and sapping my abilities little…

How I Hiked Down the Grand Canyon in a Wheelchair

“Are you sure you’ll be OK?” my three friends asked after they sat me on a picnic table, pen in hand and journal before me. It was 2006, and we were on spring break. The late afternoon sunlight wasn’t getting any brighter, and I knew they wouldn’t want me to…

Sometimes I Just Want to Be Average

Everyone could see me grimacing uncomfortably. “Here we go again,” I think as I feel an uneasy lump in my stomach. I find myself back in 1999 in a recurring, unpleasant dream I have every few months. In the dream, I’m at my desk near the back of a seventh-grade…