Battling a degenerative disease, especially one so rare that most people haven’t heard of it, can be a lonely journey. Even our closest friends and family members, who know us better than anyone, can only imagine and sympathize, as they don’t face the same physical struggles. Unless you have…
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…
The effects of Friedreich’s ataxia (FA) are vicious, relentless, widespread, and undeniable. FA uses my own body to slowly defeat me physically. The disease has taken away so much from me and given me a lot of hardship. I guess you could say that by many definitions, I am…
This too shall pass? The human experience is such a beautifully complicated journey. We all learn, grow, develop opinions, follow tendencies, change, adapt, and change some more. One common catalyst that shapes who we are is adversity. Everyone experiences adversity in one way, shape, or form, and that forever changes…
In August 2013, months of questions, fears, and wild speculation came to a shocking conclusion. The changes to my body and abilities were explained: I had Friedreich’s ataxia (FA). The days, weeks, and months after receiving that diagnosis were some of the strangest of my life. As I…
Most of us have probably heard inspiring stories about “mom strength,” “superhuman strength,” or “hero strength.” This phenomenon, known as hysterical strength, refers to extraordinary displays of human strength, typically prompted by a life-threatening situation. As someone living with a degenerative condition called Friedreich’s ataxia (FA), I’ve spent…
I’ve always been an emotional person. I feel everything with great depth and have a long memory, and while I love to celebrate the good in life, I tend to be consumed by the bad. I often take things personally and overthink them. At times, my emotions will seem to…
I share my journey with Friedreich’s ataxia (FA) openly, and I know that my sharing, coupled with my highly visible walker, puts a spotlight on my disability. However, I’ve had some acquaintances who immediately approach me and bring up my disability every time our paths cross —…
I grew up in Katy, Texas, and in keeping with the Texan stereotype, I was a cheerleader who married my high school sweetheart, who also happened to be the captain of the football team. Together, we have a 7-year-old son, Brooks, and a 5-year-old daughter, Collins. We are raising…
It’s no secret that I struggle both mentally and physically with the relentlessly progressive nature of Friedreich’s ataxia (FA). Just when I think I’ve got the hang of coping with advancing symptoms and the adaptations they require, new challenges enter my path. I feel like I’m constantly putting…
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