Little Victories - a Column by Matthew Lafleur

I’m no cartographer, but the adventurous part of me has always awakened when I hear about the saying supposedly inscribed on ancient maps: “Here be dragons.” Even though historians now believe that the phrase was only used on a single 16th-century globe, the rumor that most medieval maps warned…

Note: This column describes the author’s and interviewee’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Hope is crucial for those in the Friedreich’s ataxia (FA) community. For me, facing a rare degenerative…

The word “enduring” has been on my mind a lot lately. I was thinking about that concept as I saw friends with Friedreich’s ataxia (FA) post on social media about the approval of Skyclarys (omaveloxolone), the first-ever treatment for our disorder. Even though it’s worth celebrating…

The recent approval of Skyclarys (omaveloxolone), the first treatment for Friedreich’s ataxia (FA), is game-changing. But I’m frustrated that there’s still a long journey ahead for me. When this drug was approved Feb. 28, I celebrated in a column posted minutes after the announcement. A few…

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…

As I sat in the darkened movie theater recently, the screen showed a colossal battle filled with too much reliance on CGI. I yawned and checked my watch. Not even halfway into the movie’s run time and I was already losing interest. I was surprised that the scene bored me…

Melodramatic title aside, Tuesday, Feb. 28, was a nail-biter. The U.S. Food and Drug Administration (FDA) was expected to make a decision regarding the approval of Skyclarys (omaveloxolone) for my rare disease, Friedreich’s ataxia (FA). A long and bumpy road had led to this decision, and the…

As of today, the status of Friedreich’s ataxia (FA) has changed from untreatable to treatable, thanks to the approval of Skyclarys (omaveloxolone) by the U.S. Food and Drug Administration (FDA). I still find it unbelievable that FA has a treatment. I’m reminded of high school, when one…

I’m realizing that a Friedriech’s ataxia (FA) diagnosis is a family affair, and the stories I tell in my column, “Little Victories,” typically offer only one perspective. I tried to broaden that view when my sister Kiki shared her perspective in my column last month. She is…

As the audience gathered last week, again I asked, “Why am I doing this?” They sprawled comfortably on couches and beanbags as they waited on the slightly uncomfortable speaker: me. My friend Loren had asked me to speak to the students at his nonprofit, Hope for Opelousas, a…

Poetry has always been pivotal, even crucial, to my life’s journey. Maybe that’s fitting for a guy diagnosed with a rare disease. In one survey from 2017, only about 12% of adults reported reading poetry in the last year. My disorder, Friedreich’s ataxia (FA), affects 1…

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…

The 2000 Darren Aronofsky film, “Requiem for a Dream,” doesn’t pull any punches as it shows the hellish descent of four people into a life of addiction, while the dreams they had for their lives become further and further out of reach. Although it’s mostly overlooked today and…

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…

“Should I tell my young child that he/she was diagnosed with Friedreich’s ataxia?” Though solemn and heartbreaking, that question is not uncommon. At least three times a year, it’s asked in FA forums and online groups, and debate follows. It reminds me of my own childhood diagnosis of…

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…

As I was getting ready for breakfast a few mornings ago and listening to a shuffle of random songs, I recognized one that I hadn’t heard in years: “No Hard Feelings” by The Avett Brothers. For the first time in quite a while, the opening ran…

Last week, a college buddy of mine, Max Harrington, filled in as my caregiver so that I could take a memorable trip to New York City. We were there to attend the annual MM+M Awards, which honor achievements in healthcare marketing and communications. I was joined by several…

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…

I read the headline on social media and shrugged: “Queen Elizabeth II, Britain’s Steadfast Monarch, Dies.” My Thursday continued mostly unaffected. I normally don’t pay much attention to the British royal family, but in the past few days, I haven’t stopped thinking about the queen’s passing. Perhaps writing about…

“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…

In a conversation with a friend, she said, “I guess everything happens for a reason.” Hearing this really bothered me, even though that phrase is pretty ubiquitous; I’ve heard it repeatedly. Behind the phrase is the message that everything will be all right. Sometimes, we desperately need to hear this…

About five years ago, I packed about three DVDs before my buddy and I left for a weekend at a fishing camp. We didn’t plan on watching many movies, I just brought them in case we got bored after the sunset and the bayou mosquitoes chased us indoors. When that…

I eagerly kept refreshing my inbox. My local doctor’s office had called about 20 minutes earlier, letting me know that it had received my genetic test results and would forward them to me via email. As I wrote in a previous column, I needed updated results to participate in…

I wrote this speech last week for a group of middle-schoolers. I like the topic and think it is relevant for people like me, decades past the age of junior high students. Now that the school year is coming to a close, students are about to make a big transition:…

When I was younger, I believed in destiny wholeheartedly — that my life unfolded with very little input from me. I was just a passenger on the journey of my life, so no matter what I did, I still barreled toward a future written long ago. My belief in destiny…

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…

This year is an interesting time for those with Friedreich’s ataxia (FA). There are plenty of reasons to be hopeful for a treatment for FA, more than ever before. Finally, the first treatment seems on the horizon for this damned degenerative disorder. However, it’s important that the FA community be…

Second of two parts. Read my previous column here.  I’ve been telling the same old story about my Friedreich’s ataxia (FA) diagnosis for more than 10 years. Maybe it’s time to rewrite it. Like I wrote in my previous column, the facts of my diagnosis will never change,…

First of two parts. I answered my phone on speaker and set it on my table. I was worried that the call had a bad connection, as I heard only static. I almost hung up when the displaced-Californian voice of my good friend Kyle Bryant gave our usual greeting:…

As the end of February approaches, Rare Disease Day, held annually on the last day of the month, is exciting for most of those who live with a rare disease. But every year, something about this day just doesn’t sit right with me. This year, instead of showcasing the…

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…

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…

“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…

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…

The long drive back home was uneventful as the sky shifted from a clear blue to an ominous collection of thunderclouds. If it was a metaphor, I was too tired to notice. We drove on. I asked my buddy Ryan, who was driving my van, what his favorite part of…

“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…

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…

Although I believed that the COVID-19 pandemic was beginning to wane, the delta variant has caused a huge increase in cases. Social distancing and mask mandates are on the rise again, much to my disappointment. The U.S. Food and Drug Administration’s current health guidelines aren’t very different from…

“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…

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…

“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I hadn’t seen them in over a year due to the pandemic, and in that time, they’d gotten engaged. When they…

I’m no stranger to this question, but I wasn’t the one who posed it recently. Ever since I was diagnosed with Friedreich’s ataxia (FA) in childhood, I’ve dealt with its progressively disabling symptoms, including the transition from awkwardness to quitting sports to using a wheelchair — all during puberty.

Tonight’s the big night. He’s been preparing for this moment for a long time. He will win. He has to. In about half an hour, I’d watch Damon Vincent’s first professional MMA fight. I’m not a big mixed martial arts fan. (I figure if I want to watch belligerent…

Research into my rare disorder, Friedreich’s ataxia (FA), seems to me to be on the rise. Though no specific treatments for FA exist, a wide range of ongoing studies is exploring different ways of treating this debilitating disease. It seems that scientists increasingly are taking an interest in FA.

“You ready to get crazy?” Damon Vincent, both the founder of this gym and my personal trainer, greeted me the same way he normally does before my workouts. Sometimes he uses both cheesy statements and bad puns to motivate his clients, like when he says…

The importance of words may be obvious to most, but I am gradually learning that lesson. The first time the power and weight of words struck me was the first time I was referred to as a “cripple.” Being called a cripple had such an impact…

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…