I’ve been struggling with my mental health lately. I’ve been grappling with feelings of inadequacy rooted in my Friedreich’s ataxia (FA) and subsequent inability to be an independent and effortless helper in my family, integrally or physically. I’ve felt like a burden, incapable of benefiting those around me —…
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,…
Friedreich’s ataxia (FA) can feel incredibly isolating. I’m fairly certain that rings true for most people going through life with a rare disease. Because FA is so rare, affecting only about 1 in 50,000 people in the U.S., few folks have even heard of it, much less understand…
Friedreich’s ataxia (FA) is hard. Its symptoms are far-reaching and its progression can feel relentless and inescapable. When you give it the power, FA can make good or mundane days feel bad, and make bad days feel like the worst. I notice that when I view life through the…
Last week, my family and I were in Destin, Florida, for my 10-year-old son’s baseball tournament. We intentionally built in a substantial amount of time to play on the beach, swim, enjoy fun restaurants, fish, and relax. His baseball team, coached by my husband, Kyle, has played together for four…
I’m a firm believer that life should be celebrated. I love decorating the house for holidays, birthdays, the first or last day of school, and anything else that provides my family with an excuse to get excited about life. It helps to break the monotony of our weekly routine and…
May is always a hectic month for my family. With school functions and class parties, youth sports, birthdays, Mother’s Day, and the approach of summer, life moves quickly this time of year. While part of me can hardly believe that the school year is already coming to a close for…
As I adapt to this new stage of my Friedreich’s ataxia (FA) symptom progression — being 99% dependent on seated mobility aids when I’m away from the comfort and adaptive safety measures I rely on at home — I’ve been given the rare opportunity to reshape my perspective yet…
Taking the good with the bad is a hard lesson to learn, but I’m realizing it’s imperative for approaching a healthy mindset when living with a steadily progressing disability. Friedreich’s ataxia (FA) is a daunting diagnosis to receive. In 2013, when I was diagnosed at the age of…
It’s been a wild and busy season for my family. Springtime in my household is usually eventful because it’s filled with things that we all enjoy, and most days, I wouldn’t have it any other way. From January through May, our calendar is typically chock-full of youth sports such as…
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