My Darling Disability - a Column by Kendall Harvey

I like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other. But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my…

I’ve been mostly using a wheelchair for more than eight months, after relying on a walker or rollator for seven years, so I’ve done a fair amount of explaining to people what Friedreich’s ataxia (FA) is and what living with it is like. Explaining FA — what…

Living with a visible disability caused by Friedreich’s ataxia (FA) is no simple feat. It takes a lot of trust to simply get out of bed. I have to trust that the Skyclarys (omaveloxolone) I take every morning will have more benefits than side effects, and that my…

I don’t often write about my life before Friedreich’s ataxia (FA) symptoms severely altered me at age 25. I don’t think that pining for the past is helpful when I wish to stay positive in the present and hopeful for the future. However, one of my old passions is…

Have you ever had a thought pattern become an unshakable way of thinking about yourself? A few months ago, I grew sensitive about my speech. I was convinced that my Friedreich’s ataxia (FA) had become overpoweringly obvious and taken away my ability to speak intelligibly, and my confidence took…

If you’ve followed my column for some time, you probably know these few defining pillars of my approach to living with Friedreich’s ataxia (FA): FA requires constant adaptation, but I adapt FA to my life rather than adapting my life to accommodate FA. I try to live intentionally…

I recently met with an administrator at my children’s school to discuss their experiences, their current grades, and how we can set them up for success in the next school year. As we discussed their dyslexia and its effect on their academic abilities, we also spoke about the unexpected gifts…

Since making the transition last year to primarily using a wheelchair, I am often asked why. Over the years, I’ve developed three types of “elevator pitches” to answer questions about my health and dependence on mobility aids. My answers vary depending in part on how much time I have, who’s…

I am sure that we have all been around that person who seems to always have it all together — beautiful with hair and makeup done, effortlessly trendy clothes, happy kids sent to school with lunch boxes filled with perfectly well-balanced meals, volunteers for everything, gets praised for being awesome,…

Friedreich’s ataxia (FA) affects my abilities, mood, energy levels, major musculoskeletal functions, and choices. It determines my days in ways far beyond what a 23-year-old newly diagnosed me could imagine. It is a lot to process. But, like most things, I get kind of “used to” it. New adaptations can…