My Darling Disability - a Column by Kendall Harvey

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…

Last weekend, I did something for the 10th time that I never imagined doing even once. I signed up Team Kendall for the annual fundraising event rideATAXIA in the hopes that I can contribute enough to tip the scales to save my life. For the 10th time, I will…

Scrolling through Instagram recently, I was left teary-eyed and introspective when I happened upon one particular reel. It features an oft-used voice-over of a sweet older woman talking, set to pictures and videos of precious moments with children as we hear the following: “I’ve reached the last years…

I have yet to find the secret to living a life where I wake up every morning rejuvenated, motivated, perfectly calibrated, and ready to tackle my day with gusto. I don’t think anyone has, but it’s especially difficult when I’m at the mercy of the wild card that is…

When I was young and, frankly, naive, I had a lot of misconceptions about people with disabilities. I thought that the only people who used walkers were senior citizens or those recovering from leg injuries. I also thought that only people with nonfunctioning legs used wheelchairs and that they sat…