On Aug. 19, 2013, my world was turned upside down as my five-month diagnostic journey came to a shocking conclusion: I had Friedreich’s ataxia (FA), a cruel, progressively degenerative genetic disease I’d never even heard of. Some days, it feels like I’ve been managing the symptoms for…
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 have a framed anonymous saying beside my bed that reads, “There are so many beautiful reasons to be happy.” I see it at least twice a day, and it makes me think about the things in my life I take for granted, dismiss as common, or that can be…
Last weekend, I did something for the 10th time that I never imagined doing even once. I signed up Team Kendall for the annual fundraising event rideATAXIA in the hopes that I can contribute enough to tip the scales to save my life. For the 10th time, I will…
Scrolling through Instagram recently, I was left teary-eyed and introspective when I happened upon one particular reel. It features an oft-used voice-over of a sweet older woman talking, set to pictures and videos of precious moments with children as we hear the following: “I’ve reached the last years…
I have yet to find the secret to living a life where I wake up every morning rejuvenated, motivated, perfectly calibrated, and ready to tackle my day with gusto. I don’t think anyone has, but it’s especially difficult when I’m at the mercy of the wild card that is…
When I was young and, frankly, naive, I had a lot of misconceptions about people with disabilities. I thought that the only people who used walkers were senior citizens or those recovering from leg injuries. I also thought that only people with nonfunctioning legs used wheelchairs and that they sat…
As I approach the 10th anniversary of my Friedreich’s ataxia (FA) diagnosis, I’m struck by an explosion of complicated and contradictory feelings. In August 2013, when I learned that the poor balance, fatigue, and slower speech I’d been experiencing were caused by FA, my future terrified me.
Summer is in full swing for my family. My daughter, Collins, 6, and my son, Brooks, 8, finished school the last week of May, and it’s been nonstop chaos ever since. With camps, trips, sports, tutoring, working, exercising, chores, play dates, and more, our summer has been action-packed. Every time…
Living in a disabled body in a predominantly able-bodied world is a rare experience that, frankly, I never anticipated having. Especially in my 30s. But thanks to my progressing Friedreich’s ataxia symptoms, it’s an existence I’m now, unfortunately, getting more and more accustomed to every day. While many of…
Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was incredibly overwhelmed, to say the least. I’d never…
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