My Darling Disability - a Column by Kendall Harvey

Before my Friedreich’s ataxia (FA) symptoms began, I was a healthy young adult with active hobbies, big plans, and an extroverted lifestyle. Now, after more than a decade with FA, I’ve seen so much change and many unexpected lessons. Some obvious physical struggles come along with a progressively…

As a mother of two young children, I have a lot of discussions about what’s fair. My son will whine about how “unfair” it is that his sister gets to watch a movie while he’s at baseball practice, and my daughter will complain about how it’s “unfair” that my…

The decade that I’ve been living with Friedreich’s ataxia (FA) has been full of unanticipated highs and lows. It has also been full of chaos, monotony, blood, sweat, tears, laughter, praying, research, victories, failing, falling, rallying, trying again, and celebrating. Amid all of those moments, a few…

I’m often asked to share my perspective about the future as a progressively disabled woman with Friedreich’s ataxia (FA). The question always makes me ramble on with a series of contradictory thoughts and words like “afraid,” “unsure,” “sad,” “overwhelmed,” and “anxious.” It’s clear I haven’t devoted much time…

I’m not shy about my Friedreich’s ataxia (FA) diagnosis and how it’s affected my life. I share all of the twists and turns of my FA journey openly, all in the name of raising awareness, inspiring hope, and removing the feeling of isolation that so many people with…

When I was diagnosed with Friedreich’s ataxia (FA), I was obsessed with gathering research and other information to arm myself with anything that might prepare me or give me a slight advantage as I attempted to combat what the disease would do to my body. Although I can…

I was diagnosed with Friedreich’s ataxia (FA) at age 25. Because FA is so rare, my neurologist had limited information to share with me. I’d never heard of the disease I’d now be fighting for the rest of my life, so I did what anyone would do: I…

When I explain Friedreich’s ataxia (FA) to people, I adjust my verbiage depending on who I’m talking to. If my children or their friends ask why I use a walker, I’ll explain that my legs don’t work very well and I use the walker to help me avoid falling…

From the minute I wake up each morning, my disability and limitations are in my face, demanding attention, adaptation, and adjustment. In other words, I’m not allowed a moment of bliss when I can forget that I have Friedreich’s ataxia (FA). I guess you could say that feeling…

On Aug. 19, 2013, my world was turned upside down as my five-month diagnostic journey came to a shocking conclusion: I had Friedreich’s ataxia (FA), a cruel, progressively degenerative genetic disease I’d never even heard of. Some days, it feels like I’ve been managing the symptoms for…