The words from Kyle Bryant and Sean Baumstark’s “2 Disabled Dudes” podcast rings through my head: “Life is all about how we react.”

Reacting is all I’ve done since my FA diagnosis in April 2018. Even before that, actually, when my parents told me about my disease in January following my revealing neurology visit, I cried all night. But the very next day, I hit the weights in my garage as hard as ever. Later that day, I went to my dad’s “Clement Arts” event, and life moved on.

There’s been moments when I needed a reminder, and there’s been days filled with dark, heavy clouds inside my heart, but never once have I lost my grip of the wind that swooshes those clouds away to reveal the bright sun that has been there all along. 

FA does not currently have a cure or treatment. It is a rare disease. It is progressive, meaning it gets worse at a deliberate but unprecedented rate. It’s supposed to put me in a wheelchair within five years of diagnosis and shorten my lifespan to under 40 years. It is a cruel, relentless disease. Here’s how curefa.org describes FA:

“Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States has Friedreich’s ataxia. It is estimated there are 4,000 individuals affected with FA in the U.S., and 15,000 affected individuals worldwide.” (visit https://www.curefa.org/what-is-friedreichs-ataxia for more about FA) 

It is easy to read those words and feel alone. It is hard to go on my college campus every day and not see any other walkers around. In fact, I see electric scooters whooshing by more than anything. Must be nice. 

But then I go to my clinical trial visit at the University of Florida, which I’ve been going to regularly since the summer of 2018. I have my mom by my side all the way, then I see my hard-working friends and scholars in genetics and genomics, PhD candidate Shandra Trantham and Christian Maugee (who also have FA), my trial coordinators’  smiling faces and hear Dr. Subramony shuffle into the room, and I realize I’m not alone.

Even though Dr. Subramony asks me to try to stand with my eyes closed, he and my trial coordinator stand on each side of me, ready to catch me when I stumble backward almost immediately.

“Are you steady? Okay go,” Dr. Subramony says. Less than two seconds later, his timer beeps to a stop, “I gotcha. You can have a seat.”

I’m not alone. In fact, I’m blessed to have joined the drug trial for a drug that’s now being reviewed by the FDA to potentially be FA’s first approved treatment. That, of all trials, is the one I landed in first, just months after my official diagnosis.

But personally, I am unsure if the medicine is benefitting me. While that is disappointing, it’s highly gratifying doing the nine-hole peg test faster the second time than the first, or hearing “Good job! You can rest as long as you need” after completing the six-minute walk test after being in the study for over four years, even if I need a walker to do so now. 

And not just because it means I’m fighting progression. It’s because I know I’m a part of something bigger than myself: a community rallying together to beat a disease that has taken so much from so many individuals. And we do it because that’s what we CAN do. FA might take our abilities away, but it can’t stop us from supporting each other.

“The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia.” (visit https://www.curefa.org/mission for more about FARA).

My dad passed away in June, but I will never forget the bike rides that we conquered, the hands we shook at the FARA Energy Ball in 2019, the laughs we shared when Kyle Waterman showed us his new profile picture of Bo Nix in Oregon green and yellow, and most of all, how proud he was of me when I was a top fundraiser at RideAtaxia Orlando in 2019. I know he was smiling down on me when I gave a tribute to him on the speaking panel I was on at FARA’s symposium in Philadelphia in September.

He knew better than anyone that Bryant and Baumstarks’ saying is true, life is nothing more than how you react.