Columns

I took off the hood that blacked out my vision and covered my face. My friend Ryan and I were in a dimly lit room. We had 60 minutes to reunite with our friends and figure out how to unlock the exit. When time was up,…

I recently wrote about my gratitude for the people I’ve been privileged to meet and build friendships with since my Friedreich’s ataxia (FA) diagnosis. My frame of mind when writing that column was affected by the outpouring of love and well wishes…

“It is time,” I thought to myself. A number of loved ones had presented the idea of transitioning from a rollator to a wheelchair out of concerns for my safety. But I believe it’s a decision that should be made by the patient. Recently, I came to terms with the…

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. I am in my new standing frame, clumsily clicking on my laptop’s keyboard. Zeego, my service dog, is sleeping beneath me. The shades are open in my bedroom and sunlight is flooding in,…

I often struggle with two opposing principles of thought: I have a strong animosity toward Friedreich’s ataxia (FA), and I have a deep gratitude for life because of it. The animosity is easy to understand. Even for those unfamiliar with…

My anxiety kicks in when I go out. Between choosing an assistive device, worrying about the accessibility of the venue, and anticipating stares from others, it can be overwhelming. The anxiety is so debilitating at times that I simply choose to stay home. I didn’t…

Members of the Friedreich’s ataxia (FA) community are waking up each morning with extra grateful and hopeful hearts, thanks to the recent news of a successful clinical trial sponsored by Reata Pharmaceuticals. Ron Bartek, president of the Friedreich’s Ataxia Research Alliance (FARA), shared the groundbreaking results of…

When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and I was ready to learn about it. I assumed the treatment or the cure would be expensive and unpleasant. When I discovered…

There is a first time for everything, right? That’s a phrase I often hear and it is true. A baby’s first words, a teenager’s first driver’s license, a first speeding ticket, a first kiss, a first house … the list is endless. A first broken bone…

I recently rediscovered my passion for baking. My hopes and dreams should not be put on hold because of Friedreich’s ataxia (FA). I should not be discouraged from doing what I love. I take satisfaction in knowing I can enjoy an experience like everyone else, even if I have to do…

Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel lobby.  Taking a group picture of people with Friedreich’s ataxia (FA) was complicated. The majority of us were seated in…

The difference between determination and stubbornness is becoming more and more clear. With the recent fracturing of my hip and weeks of inpatient rehabilitation, I’ve found myself teetering on the thin line that separates the two. I’ve always thought of myself as a determined individual; someone…