Why I love surprises in this life with Friedreich’s ataxia

Surprises fuel me in life with Friedreich’s ataxia (FA).

I normally don’t celebrate my birthday for more than a day, so I didn’t expect a party in September, especially considering that my birthday isn’t until mid-November. I’m turning the big 4-0 this year, but I’d planned to have a quiet milestone that you nod at more than celebrate.

But in late September, my family and a group of friends had other plans. When I rolled into what I thought was a retirement party for my dad, a roomful of people shouted, “Surprise!” I was bewildered as I looked around for my dad, the supposed guest of honor. Then I noticed one of my friend’s kids, and it clicked: I was the reason for the surprise.

That realization hit like a wave, and soon there was laughter, hugs, and the kind of disbelief that makes your face hurt from smiling. A big thank-you to my mom for making it happen.

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Startled by joy

I’ve always loved the idea of surprises, but it’d been a while since I’d felt one. That night, surrounded by people who went out of their way to catch me off guard, I remembered what it’s like to be startled by joy.

A few weeks later, in October, I was in Philadelphia for the annual Friedreich’s Ataxia symposium. I was there with my good buddy Damon, who had attended my birthday party and is a trainer in Friedreich’s Ataxia News’ “Rare Moves” series. Between a rideATAXIA event, spending a few days with a colleague’s family, attending sessions on gene therapy and exercise, and having meals with industry partners and fellow teammates from Bionews, the parent company of this website, my upcoming birthday kept coming up. Several times, I was serenaded by rooms full of people I’m lucky to know.

I’ve never been big on celebrating birthdays, but this year is worth celebrating. The heaviness of 2025 — which included surgeries, doctor appointments, and an incessant fear of physical decline due to FA — took a back seat to something lighter, as if life itself were whispering, “You’re still part of this story.”

Surprises do that. They interrupt the script we’ve started to believe too deeply, the one that says life is predictable, struggle is constant, and joy must be earned. Living with FA means structure and repetition are survival skills: the same routines, the same careful planning, the same quiet calculations about balance and effort.

Surprises don’t ask for structure. They just burst in and remind you that not everything about your days has already been decided. And that is great to know.

Maybe that’s why these moments resonate with me. They don’t change anything medically, but they do change me, even if just for a while. They remind me that being alive isn’t just about endurance; it’s also about being open to wonder.

The joy of surprise is a rebellion against numbness. It’s proof that even in lives shaped by limitation, there’s still room for spontaneity — for the world to sneak up behind us with a grin and remind us that we’re more than our expectations, diagnoses, and routines.

I hope life catches you off guard soon, too. I hope a surprise shakes you awake long enough to remember that joy still exists and is waiting to find you.

As for me, my 40th birthday isn’t over yet. When I was younger, I didn’t think I’d live this long. I thought my 20s might be the end of the story. But here I am, four decades in, surrounded by love, and still surprised by life. And that’s the best kind of surprise.

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.