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…
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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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…
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…
The decade that I’ve been living with Friedreich’s ataxia (FA) has been full of unanticipated highs and lows. It has also been full of chaos, monotony, blood, sweat, tears, laughter, praying, research, victories, failing, falling, rallying, trying again, and celebrating. Amid all of those moments, a few…
I’m often asked to share my perspective about the future as a progressively disabled woman with Friedreich’s ataxia (FA). The question always makes me ramble on with a series of contradictory thoughts and words like “afraid,” “unsure,” “sad,” “overwhelmed,” and “anxious.” It’s clear I haven’t devoted much time…
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