My Darling Disability - a Column by Kendall Harvey

First in a series. On Sept. 6, 2025, my worst fear happened. It felt inevitable. I am 100% dependent on mobility aids due to poor balance and coordination with Friedreich’s ataxia (FA). Around the house, I use a rollator walker, but when I’m out and about, I…

When I was 25 years old, on Aug. 19, 2013, my life forever changed. Together with my parents and husband, I got the answer we’d long sought about why my balance was progressively, noticeably, and inexplicably getting worse, despite being young, active, and otherwise healthy. A neurologist provided a…

Mid-August is generally recognized as back-to-school time for those with school-age children or who work in education. Our television programs are flooded with commercials for the latest and greatest in children’s fashion trends and the new must-have school supplies; our inboxes are full of promotions and sales; and there’s a…

Sometimes life with Friedreich’s ataxia (FA) can feel smooth, all things considered. Now and then, the accommodations my disabilities demand or the adaptations my symptom progression requires don’t seem that intrusive. I feel like I am, for the most part, able to take part in my life. My participation…

I’m 100% dependent on mobility aids due to my current stage of Friedreich’s ataxia (FA) progression. Given that, there’s never been a shortage of reactions by others to my various walkers and wheelchairs. In my personal experience, most toddler boys are fascinated by anything with wheels, so I’ve…

Being able to recognize your needs is a big sign of maturity. As a parent, I’ve had a front-row seat as my two young children, who have very different personalities, learn to recognize when something is “off” in their body. The Gottman Institute explains that anger is a secondary…

I’ve been struggling with my mental health lately. I’ve been grappling with feelings of inadequacy rooted in my Friedreich’s ataxia (FA) and subsequent inability to be an independent and effortless helper in my family, integrally or physically. I’ve felt like a burden, incapable of benefiting those around me —…

Friedreich’s ataxia (FA) can feel incredibly isolating. I’m fairly certain that rings true for most people going through life with a rare disease. Because FA is so rare, affecting only about 1 in 50,000 people in the U.S., few folks have even heard of it, much less understand…

Friedreich’s ataxia (FA) is hard. Its symptoms are far-reaching and its progression can feel relentless and inescapable. When you give it the power, FA can make good or mundane days feel bad, and make bad days feel like the worst. I notice that when I view life through the…

Last week, my family and I were in Destin, Florida, for my 10-year-old son’s baseball tournament. We intentionally built in a substantial amount of time to play on the beach, swim, enjoy fun restaurants, fish, and relax. His baseball team, coached by my husband, Kyle, has played together for four…