Finding the through lines in life with FA, even as my goals change

“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds of times, thoughts of identity and destiny clouded my mind anew, as my birthday was in a few days.

Sometimes I wonder if I’m consistent. My path to adulthood hasn’t been smooth; my goals and plans have changed since this song premiered when I was in high school. Back then, my goal was to be a famous athlete. I squarely blame my diagnosis of Friedriech’s ataxia (FA) in adolescence for moving the goalposts and forcing my desires to change. FA’s progression drastically shifted my direction in life.

With every loss of function, my skies seem to grow darker. My life now feels foreign to the successful life I’d dreamed about as a teenager.

Is it, though?

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Looking to our through lines as a guide

Sometimes I compare my broken road with my high school buddy’s seemingly linear path to success. That friend, Hunter deBlanc, and I became buddies through our love of existential discussions and emo music. (After all, I watched “Fight Club” for the first time after school at his house, and we’d often talk about Something Corporate and Jack’s Mannequin, two of our favorite bands.)

Hunter began playing in bands in college and eventually launched a solo career. He was recently part of the 2024 Holiday From Real cruise, which celebrates and features music performed by Andrew McMahon, founder and lead singer of both Something Corporate and Jack’s Mannequin.

And don’t think that Hunter is on that cruise only as a fanboy. McMahon personally invited him to perform.

Andrew McMahon, left, and Hunter deBlanc being cute during Hunter’s show on the Holiday From Real cruise. (Courtesy of Hunter deBlanc)

It’s easy to imagine that Hunter’s journey has been a steady uphill climb, especially compared with my frustrating and confusing journey with FA.

However, I’m learning that no one’s dreams come true precisely as planned, not even Hunter’s. I’ve had a front-row seat as he quit playing bass guitar in a local band and became a solo singer-songwriter on piano. He considered quitting music entirely at times when landing gigs was slow and difficult.

But he held on. His passion became his through line, the underlying thread that guided him.

That’s the lesson for me and the entire FA community: Even in chaotic circumstances, look for the through lines that lead our broken roads to beautiful destinations.

Even though my current path would be unrecognizable to my younger self, and my goals have shifted, maybe they still exist. Perhaps that thread of passion I had as a kid still survives. FA modified my goals, but it hasn’t destroyed them.

As a quick note, writing about finding beauty and hope in life with FA always makes me pause. Being able to convey any positive outcomes of this treacherous disease is a privilege denied to many. I never intend to belittle the challenges and deaths in my community. My goal is to obliterate FA from existence.

Until then, I aim to encourage people like me to see stars, even if it feels like our night sky is growing progressively darker.

Hunter looked up in the dark and followed his love of music and performance like the North Star, until it led him to sit beside his music idol at a piano. I’m eager to see what’s next for you, Hunt.

My past goals — being a good athlete, writing for a living, and providing existential counseling for people with disabilities — serve as the constellation that continues to guide me. I followed it to my current job and became a somewhat well-known FA advocate. And though riding my recumbent trike and being active at my local adaptive gym isn’t the athletic life I’d envisioned, it’s where I find myself. And though I sometimes forget this, I’m so happy to be where I am.

I can’t wait to see where through lines lead me — and you, reader — next. You’ve come this far. I’m so proud of you. Let’s keep going.

If you’re a fan of punk-pop music, check out my buddy Hunter deBlanc (“duh-BLAWN”) on Instagram and tell him Matt sent you.

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.