While living with FA, we get used to dealing with setbacks
Finding a way to move forward despite being in the hospital is my little victory
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Living with Friedreich’s ataxia (FA) means I’ve learned to expect the unexpected. Sometimes when everything seems lined up just right, something completely out of my control will change the script. This week, that something was a spider bite.
It started small, a mark on my arm I noticed when I woke up. It was a little irritating but nothing that felt like it would be serious. I figured I’d have it checked out, get some antibiotics, and move on. Instead, I ended up being admitted to the hospital for two days.
That alone was frustrating, but the timing made things even harder. The following weekend, I was supposed to go to Orlando, Florida, to speak on a panel at the National Ataxia Foundation’s Annual Ataxia Conference, something I’d been looking forward to. I didn’t know if I’d be able to go.
Damn spiders.
We’re used to adapting
There’s a specific kind of disappointment that comes with a moment like that. It’s not just about being sick — it’s about being sidelined when you were ready to show up, had momentum, and were excited to be part of something bigger than yourself. I couldn’t believe this was happening to me.
Then something else hit me just as hard: I was in a hospital room that wasn’t built for someone who uses a wheelchair. And there was no wheelchair-accessible bathroom on my floor. Something as basic as going to the bathroom became a challenge I had to plan around, delay, and manage in ways most people never have to think about.
When you live with FA, you get used to adapting. You learn how to work around things. But moments like that remind you that much of the world still isn’t designed with you in mind.
Lying in that hospital bed, dealing with everything at once, I had a lot of time to think. I thought about how quickly things can change, and how frustrating it is that something so random can throw everything off course. And yes, I thought about whether I had let people at the conference down.
I didn’t handle the situation perfectly. But here’s what I keep coming back to: I got through it. Not in a dramatic or inspiring way. I wasn’t pushing through as if nothing were wrong. I was uncomfortable and tired and had to learn to accept my body in this particular circumstance. So I let my body recover and adjusted even when I didn’t want to adjust. And that counts.
Lately, I’ve been thinking a lot about what resilience actually looks like. It’s not always big or visible. Sometimes it’s just continuing on when things don’t go the way you had planned. We don’t always give ourselves credit for that version of resilience — the quiet kind where the win isn’t doing something big; it’s simply not giving up when things get hard.
Living with FA means adapting to things that aren’t fair. This was just an unexpected version of that same challenge, a reminder that life doesn’t wait for the right moment to get difficult. It just happens. And while we don’t get to control the situation, we do get to decide how we respond to it.
For me, the little victory this week wasn’t being on stage in Orlando; it was sitting with my frustration in a hospital room and still finding a way to move forward. There will always be another panel, another opportunity, another moment to show up.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
Natalie Sirota
Thank you so much Matt! You are always such an inspiration and positive voice for all of us struggling as we live with rare disease.