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…
My Darling Disability
— Kendall Harvey
Kendall Harvey is a wife and mother of two in Austin, Texas. She has been navigating life with Friedreich’s ataxia (FA) since her diagnosis in 2013 at the age of 25. She worked in marketing before “retiring” to be a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. Until that day comes, she aspires to inspire others with her column by detailing personal life lessons about grit and grace. Kendall shares a message of hope despite disability.
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My family, including my parents, recently took a grand vacation. We started in West Yellowstone in Montana, where we watched a juvenile black bear hunt a squirrel, swim across a river, dig for grubs in a downed tree, and relax in the sun. We also saw waterfalls, canyons, thermal pools,…
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…
It’s so easy to get down about the daily struggle of becoming progressively more disabled. Every single day, more of my abilities and independence slip away, and I rely more heavily on my village for support. Although this brings up a lot of hard, sad, heavy, difficult-to-process feelings, it…
As we approached the end of 2023, I didn’t feel like myself. I was overwhelmed by most things in my life, and I constantly felt inadequate. That made it easy for me to retreat, curse my circumstances, cancel plans, and spread my bad mood like a plague. I’d been functioning…
Actor and activist Michael J. Fox, 62, has been publicly battling Parkinson’s disease since 1998. Although Parkinson’s and my diagnosis of Friedreich’s ataxia (FA) are very different, they are both neurological diseases that affect your ability to function “normally,” cause pain and heartache, and are currently…
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…
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