My Darling Disability - a Column by Kendall Harvey

Now that I’ve lived with Friedreich’s ataxia (FA) for a decade, I’ve found that I get into the habit of explaining my journey in bullet points to those who ask. I frequently describe my situation by saying such things as “I’m unfortunately fully dependent on my walker. It isn’t…

Part of living with Friedreich’s ataxia (FA) is battling relentless fatigue. If I feel energized at all, it is still a fraction of what I need to successfully tackle my day. Doing the simple, unavoidable, and monotonous tasks that all adults must do can quickly drain whatever…

Dear friends have asked me how I’m doing a few times over the past few weeks, specifically concerning my Friedreich’s ataxia (FA). Through their questions, I’ve realized that I’ve been so caught up in the busyness of parenting young children in springtime that my life has become more family-focused.

I recently had an unpleasant encounter with a stranger who was overflowing with pity regarding my disability. In the end, she questioned my abilities with what seemed to be judgment disguised as compassion. I had my 6-year-old daughter with me, so I was extremely intentional with my tone, body…

A recent struggle has been bothering me, even though, logically, it feels silly to get worked up about it. In the big scheme of things, it has no real impact on my life, yet it’s another reminder that I’m not in control of my body. My latest woe is about…

Friedreich’s ataxia (FA) is a huge part of my life, like it or not. My disability due to FA is one of the first things people think or wonder about when they meet me. As much as that reality breaks my heart, I can’t do much to disassociate…

Through my column, I’ve become aware of two habits: I focus a lot on what I can or can’t do because of Friedreich’s ataxia (FA) and its associated disability, and I watch a lot of children’s movies. Both of these make me introspective, which forces me to…

When I’m frustrated about my Friedreich’s ataxia (FA) disabilities, life has a cruel tendency to remind me how very not “normal” I am. I continually find myself in circumstances that highlight my problems or force me to be a spectator or accept help. In those moments, I just want…

Most people know the Jackie DeShannon song that goes, “What the world needs now is love, sweet love/ It’s the only thing that there’s just too little of.” While I can think of a few more things that there’s just too little of, I wholeheartedly agree that the…

Life with a progressively degenerative neurological disease like Friedreich’s ataxia (FA) is a lot to handle. Not only is it incredibly frustrating and heartbreaking physically, but it is also relentlessly emotionally draining. In the decade that I’ve been living with FA, I think my most common complaint is…