The Night That Jeremy Cowart Made Us Feel Seen
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…
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
Overcoming our Kafkaesque nightmare with a ‘MetamorFAsis’
I tend to find messages of hope and resilience in bleak stories. Take, for instance, my column about finding hope in the objectively depressing movie “Requiem for a Dream.” Similarly, another unlikely source of inspiration comes from Franz…
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The Half-life of a Bradford Pear Tree
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…
A Heart Like a Rabbit
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.
A Functioning Mind in a Malfunctioning Body
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…
Alternative Treatments for Friedreich’s Ataxia: Cupping and Me
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…
Is Friedreich’s Ataxia a Form of Muscular Dystrophy?
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…
Moving Past Unrequited Love
“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…
Growing Into Life With a Disability
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…
Hurricane Laura Barely Missed Me
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…
Learning to Confront the Mysterious Villains in Our Lives
I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” episodes, much of the…
When a Rare Disease Treatment Comes Out, but It’s Not for You
Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular atrophy (SMA)…
What ‘Hamilton’ Taught Me About Waiting
I’m not patient. Not at all. I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, persistent, and serene in our daily…
