The day I stopped waiting: My turning point with FA care

Since I was 9, I felt like I was waiting.

Waiting for answers. Waiting for treatments. Waiting for something that would make living with Friedreich’s ataxia (FA) feel manageable, or at least more predictable.

Mostly, I was waiting for my life to start again. As a Catholic boy, I longed for it. I prayed for a kind of resurrection, for a new life.

After my diagnosis, it felt like part of me was dying, like a recognizable version of my life had ended. Every new symptom, small loss of coordination, and reminder of what my body couldn’t do anymore reinforced that idea.

For a long time, I thought I knew what my future with FA looked like. I pictured a life defined by limitation, where my capabilities and my meaning gradually narrowed. Less potential. Fewer opportunities. Fewer chances to show up in the ways I once imagined.

So I waited.

I waited for a breakthrough. For a treatment. For a miracle. For something external that would come along and give me permission to move forward again.

But while I was waiting, life didn’t pause.

It kept moving. Without me.

The turning point

There wasn’t a single dramatic moment where everything changed. It was quieter than that.

At some point, I realized that waiting for a miracle wasn’t protecting me. It was holding me back.

I had been treating FA like something separate from me, something I could outrun or outwait. But the more I tried to distance myself from it, the more disconnected I felt from my own life.

The turning point came when I stopped asking, “When will this get better?” and started asking, “What can I still do, even with this?”

That shift mattered more than I expected.

Instead of seeing FA as the end of my story, I started to see it as part of it. Not something I had to accept all at once, but something I had to stop avoiding.

That’s when I began to take a more active role in my care.

For me, “FA care” stopped meaning simply going to appointments or waiting for specialists to tell me what came next. It became something more personal. It meant paying attention to my body instead of resenting it. It meant asking questions, staying informed, participating in research, and taking responsibility for the parts of my life I could still shape.

I couldn’t control the fact that I had FA. But I could control whether I stayed disconnected from my own future. I paid attention. I asked more questions. I went to a rideATAXIA event in Dallas in 2016 and became part of the FA community. I started looking into clinical trials, not just as a potential treatment, but as a way to contribute.

And that changed more than just how I approached my own life.

Getting involved opened doors I never would have expected. I began writing a column for Friedreich’s Ataxia News, sharing my experience in a way I hadn’t before. That eventually led me to the role I’m in now at Bionews, working in a field that once felt completely out of reach.

It’s still strange to say, but it feels right. It feels like something I’m meant to be doing.

None of that came from waiting. It came from stepping into something I had spent years trying to avoid.

It wasn’t about fixing everything.

It was about showing up anyway.

What changed after

Once I stopped waiting for a miracle, things didn’t suddenly become easy.

FA didn’t go away. The challenges didn’t lessen. There are still days when things feel unpredictable, frustrating, and overwhelming.

But my relationship with FA changed.

I stopped measuring my life by what I had lost and started paying more attention to what was still there.

And there was more than I expected.

There were moments of laughter that felt genuine, not forced. There were connections that felt deeper. There were opportunities I wouldn’t have considered before, including being part of research that could help shape the future of FA care.

It also meant accepting something I had resisted for a long time: physical hardship does not mean an unworthy life.

That idea sounds simple, but it took time to believe it.

The version of “heroic” I had when I was younger looked different. It was loud, confident, and untouched by struggle.

This is not that.

My version is quieter. It includes frustration, setbacks, and days when things don’t go as planned.

But it also includes persistence, showing up when it would be easier not to, and finding meaning in moments I used to overlook.

Looking back

Looking back, I don’t think my life was ever actually on hold.

I just thought it was.

FA didn’t end my story. It changed it in ways I didn’t understand at the time.

If there’s one thing I would want someone else with FA to know, it’s this:

Your life is not limited to what you expect it to be.

There will be moments you don’t see coming. Some will be difficult in ways that feel overwhelming. Others will surprise you in ways that feel almost impossible.

There will be laughter where you didn’t think there could be. There will be meaning in places you didn’t expect to find it.

And there will be opportunities, not to go back to what life was, but to move forward in a way that is still yours.

You don’t have to have everything figured out.

You don’t have to feel strong all the time.

But you don’t have to wait, either.

Because your life is already happening.

And whether it feels like it or not, there is still something here worth showing up for.

I believe that. And I believe in you.