Though my diagnosis was difficult, I decided to write my own story

When I introduce myself, I always say: “I’m Matt, and I have Friedreich’s ataxia.” It’s not just a fact; it’s a part of the story that’s shaped me.

Part of me can’t stand thinking that a progressive disease dictates my life. That part of me refuses to let it be true.

With time, though, I’ve learned that while Friedreich’s ataxia (FA) has profoundly shaped my life, it doesn’t define me. Although my journey with FA is as unique as anyone else’s, we can rewrite the narrative FA imposes on us so we can reclaim our agency, find community, and discover possibilities.

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I was diagnosed with FA when I was an active and athletic young boy. Back then, I expected to be a funny and popular jock in high school. But the story I’d begun to imagine for myself was shattered by my diagnosis.

I went to a neurologist for an explanation of my poor balance and gait issues, especially while running. At the appointment, I was surprised at how difficult I found some of the seemingly simple tests, such as touching my nose with my hand. I expected the doctor to prescribe me some medicine that would make me better. Instead, I was told I had Friedreich’s ataxia and was sent home. Those unfamiliar words — “Friedreich’s ataxia” — did nothing to clear up my confusion.

Years passed, and I noticed that my body had changed and my abilities had declined. I began to grasp the weight of those words, which forced me to confront an unsettling question: With this change, who was I?

I lived in confusion and ignorance until high school, when I finally decided to learn more about the disease to make the foreign become a little more familiar. But what I read on the internet was devastating: FA would likely steal my ability to walk, shorten my lifespan, and limit what I could achieve. It felt like a death knell for the story I’d imagined for myself.

Finding a new perspective

FA threw me into an existential crisis. Who was I if I couldn’t be the person I’d imagined? My identity felt off-script from my story, unmoored from my imagined life. I sank into that darkness for a while. But another part of me, a stubborn streak, declined to act dead before I was. I refused to give up.

When I started college, I made a critical adjustment by regularly using a wheelchair. I dreaded this physical change because I thought it marked a devastating loss. But I eventually came to see it differently. Over time, the wheelchair became more than just a tool to help me get by; it was a testament to my willingness to adapt, redefine my independence, and move forward. Because of that, I was able to fully embrace college life and forge incredible friendships.

Yet despite my earning a master’s degree in counseling, FA still seemed to be in charge of my story. I graduated with honors, yet struggled to find work. I blamed that on FA’s progression. I joined my family’s business, which wasn’t my dream, but I figured it was my role in the story FA was writing for me.

Then serendipity struck: I found an opportunity to write for Friedreich’s Ataxia News. Writing for the FA community reconnected me with storytelling and reminded me that sharing our experiences can inspire, unite, and heal.

Community became another lifeline. Through organizations like the Friedreich’s Ataxia Research Alliance, I met others who were facing similar struggles. Knowing that my sister, who also has FA, and I weren’t alone brought me strength.

The development of treatments for FA also marked a turning point, not only for me but also for the FA community at large. While a cure for FA doesn’t yet exist, therapies, both approved and experimental, offer hope of progress, reminding us that every step forward matters. For me, any potential way to slow disease progression is of monumental importance in our daily battle with FA.

Living with FA isn’t easy. It’s a heavy burden that tests our spirits every day. But I’ve learned that FA isn’t the end of my story. It’s a part of it, but not the entirety of it. Through counseling, exercise, medication, and the unwavering support of my community, I’ve built a foundation that allows me to push forward.

In the story I’m writing for myself now, I aim to inspire others facing similar challenges. Whether through this column or a children’s book I wrote for kids with a rare disease, titled “Prof. Hong Explores Friedreich’s Ataxia,” my hope is to remind people that their story isn’t over.

Your story isn’t over.

Whether navigating FA, another rare disease, or other rare challenges, remember, the pen is in your hand. Your story is still yours to write. You can compose new chapters that include possibility, strength, and hope. Together, we can support and inspire one another to write our own best stories.

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.