Knowing when to accept help and when not to is a regular challenge for those of us with progressive diseases. “Do you want me to push you down the hall to the kitchen?” my personal care attendant, a family member, or a friend might ask. This…
Little Victories — Matthew Lafleur
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, Bionews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
Featured Post
For a long time, I thought the moment I’d start using a wheelchair would be my choice. It wouldn’t be an easy one, of course, but it would still be my decision. Living with Friedreich’s ataxia (FA) often feels like a series of choices: Cane or no cane?…
A large, old oak tree used to grow outside my bedroom window. A few weeks ago, it fell during the bluster of Hurricane Delta. The tree crashed down while I was less than 20 feet away, yet I slept through the fall, none the wiser. (If a tree falls outside…
I intentionally fell off the treatment table. A metallic taste filled my mouth as I thudded onto the matted floor with a crash, looking less like a superhero and more like a marionette whose strings were cut. My fall was neither steady nor…
I have no idea what I’m doing, I thought as I turned my head from side to side in an effort to provide the photographer with a variety of angles so that he might have a viable shot to work with. He had asked…
Many trees stand stoically on my family’s property, one of which I pass each time I ride my recumbent trike. I take notice of its bark and branches more than I have with any other tree in my life. I only recently found out the name…
Moist, squelching sounds filled the otherwise silent room as the sonogram of my heart was being conducted. I was lying on my left side on the slim hospital bed, at my yearly cardiovascular checkup. One of the most important tasks to ensure the wellness of…
I have a confession to make: The part of my Friedreich’s ataxia diagnosis I used to be most grateful for has now become something I question. Is it a good thing that while the rest of my body breaks down, my cognitive function remains the same?…
It wasn’t a comfortable feeling. With every press of my physical therapist’s tiny handheld pump, the edges of a small plastic cup seemed to pinch my skin a little more tightly. I had several suction cups placed on my arms, hips, and legs.
No. Thank you for reading this week’s column. *** Just kidding! I want to unpack that question, because it is a valid one. Plus, the answer has a pretty interesting backstory. I am a columnist without any real scientific training,…
“It’s just hard to be around you,” she told me. She looked down. She hated these harsh words, too. Over time, I’d learn to accept them and even be grateful for her. One day, I’d appreciate how she didn’t sugarcoat her message.
I opened the door to my closet yesterday morning to pick out my shirt for the day. Most of my shirts are solid earth tones, showcasing how boring I am. As I scanned the hanging T-shirts, my eyes lingered on one. This particular shirt always seems…
I don’t believe I’m a lucky person. But I’m relieved that the area where I live escaped massive devastation from Hurricane Laura, which made landfall in the southern U.S. last week. Videos like this show the destruction Laura caused in Lake Charles, Louisiana, just…
Explore more columns
Discussion
Discussion
Discussion