Louisiana native Matt Lafleur’s life today isn’t what he expected back when he was an active Cajun boy. After he was diagnosed in 1994 with Friedreich’s ataxia, a slowly debilitating disorder with no treatment at the time, he more or less lost hope. Despite his hopelessness, he achieved degrees in English and in mental health counseling. Writing this column at Friedreich’s Ataxia News and serving as the culture coordinator of its parent company, BioNews, combines his two degrees perfectly. Maybe he’s not quite as hopeless as he thought. In progressive disability, Matt tries to notice his little victories, hoping that others notice their own … or something like that.
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…
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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.
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…
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…
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,…
“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…
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…
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…
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…
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…
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…
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.
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…
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