Columns

The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood was thankful. The details of that Sunday night in 2018 may have blurred in my memory, but the overall message from that week has stayed with me.

In a given week, a full-time employee can work five days and 40 hours or more. With all of these hours, it can feel as though a workplace has become a second home. Pursuing a career that requires at least 40 hours a week can take a toll on…

I may not like my body, but I respect it. I often find myself explaining what I mean when I say “I hate my body.” So many people the world over say that all the time. We all have something. You might wish you were taller, that your nose…

I find it easy to identify myself as a person with Friedreich’s ataxia (FA). In light of the significant effects that FA has on my life, I have no problem acknowledging myself as “Matt Lafleur, a guy with FA.” Full stop. But as I get…

To parents with newly diagnosed children and those who have been in this fight for a while: I salute you. As an adult patient, I am not coming from a place of complete understanding because I do not have a child with FA. However, I do…

When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” Then, we receive more bad news: Currently, there is no treatment or cure. But there is a ray of…

A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down the anchor’s stem and “FA” at its base. A rustic brown cord loops through the top of the ornament…

Almost every day, I have a conversation with myself about the level of my own vulnerability on the internet. Is this comment too much? Should I discuss this topic? Does anyone care? I tend to get lost in an abyss of self-doubt and insecurity when sharing my life…

Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients named Kyle Bryant and Connor Sweeny, plus people who work for the Friedreich’s Ataxia Research Alliance (FARA). PTC Therapeutics is one of FARA’s gene therapy development partners. The day consisted of watching…

“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn phrases: Life is hard, messy, emotional, and unexpected, and it’s also predictable, inevitable, and complicated. But it can be…

Before I had a smartphone to help me pass the time, I was OK. I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused on a TV with the volume either blaringly loud or so quiet that I’d have to strain to hear…

I used to enjoy going to the grocery store. I loved picking out items, seeing what’s new in stock, and hunting good deals in the store’s weekly ads. However, grocery shopping has become physically challenging as my Friedreich’s ataxia slowly progresses. It’s tough to deal with the crowds and fatigue…