My Darling Disability - a Column by Kendall Harvey

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…

As I’ve often discussed, there is no handbook for living with a progressively degenerative condition like Friedreich’s ataxia (FA). However, there are good general rules of thumb that everyone can follow, such as safety first; if at first you don’t succeed, try and try again; tomorrow is a new…

As we navigate life, I think we’ve all felt, said, or at least heard the common saying “It’s always something.” I find myself saying that as a somewhat sarcastic self-challenge, meaning I still need to find a way to move forward, despite whatever new “something” there is to overcome.