Like many people dealing with traumatic medical problems, I vividly remember when I was diagnosed. For me, that happened before they had even identified the Friedreich’s ataxia (FA) gene, so I had to endure lots of difficult testing. Today, the FA gene is identified through a blood or…
Columns
This week marks the seventh anniversary of writing for Friedreich’s Ataxia News under the banner of “My Darling Disability.” I’m humbled by the thought that my words have impacted even one life in the Friedreich’s ataxia (FA) and broader rare disease communities, and I plan to continue to honor…
“The Real Housewives of Beverly Hills” is one of my pleasures. I’m intentionally not writing “guilty pleasure” because I don’t feel guilty for watching the show, even though it’s silly and does nothing for me except that I enjoy their petty arguments and hurts. But cozying up with…
As I begin 2025, all of my planning, expectations, projects, and so forth are through the lens of this awareness: This is the year I’ll start using a wheelchair full time. Knowing this shift was coming has been both helpful and hard. As my family and I fully embraced…
It’s January, and despite the gray skies overhead and the lingering chill in the air, I feel a little more motivated to tackle the mundane tasks left on my to-do list. I’m starting with a thorough check of the batteries in our smoke and carbon monoxide detectors on each level…
Every time I shower, I wrestle with the competing emotions of being a little afraid of a fall and wanting to relax into that delicious feeling of hot water beating on my back. A couple days ago, I decided to embrace my fear instead of pushing it away. Let me…
When I introduce myself, I always say: “I’m Matt, and I have Friedreich’s ataxia.” It’s not just a fact; it’s a part of the story that’s shaped me. Part of me can’t stand thinking that a progressive disease dictates my life. That part of me refuses to let it…
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 Kafka’s short story “The Metamorphosis.” Last week, when life…
I recently saw a short YouTube video extolling the importance of accepting that life is bittersweet. In this acceptance, we can become content. If you’ve been reading my columns, you’ve heard me say that I’m happy. I’ve been careful to say that I’m happy overall, not happy every moment.
Life isn’t easy for anyone. Every person must trudge through hardship and struggles. Whether it’s a temporary sadness like illness or injury, seasonal hardships like a breakup or career setbacks, or even battling a life-long progressive illness such as Friedreich’s ataxia (FA), we all have to cope with unpleasant…
Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The holiday season is upon us. For many, it’s a time to gather with friends and family we don’t see that…
I was 10 years old when I heard the crack of wood on wood that sent my croquet ball flying off into a cornfield. I turned to see my grandfather’s face flash a “gotcha” grin. He’d hit my ball with his, and instead of taking two extra turns, he’d decided…
Recent Posts
- My to-do list always looms, but self-compassion helps me manage
- How FA influenced our decision when it was time to buy a car
- I shed the ‘How does she do it?’ dream to be a helpful person who needs help
- New FA drug nomlabofusp on track for US filing in June seeking its approval
- I am not ‘wheelchair-bound’ with FA, I am a wheelchair user