My Darling Disability - a Column by Kendall Harvey

Life with Friedreich’s ataxia (FA) requires constant adjustment and acceptance. I have to adjust to new symptoms regularly, whether they are temporary, like extra fatigue during a particularly busy season, or permanent, like the frustrating decrease in my walking speed. I have to adjust to safely accommodate these new…

I greatly admire people with an optimistic outlook on life, those who see the best possible outcome in all situations, point out silver linings during hard times, and encourage disheartened or apprehensive people. I used to be an optimist. Before I had any real hardship in my life, I didn’t…

I’m a big fan of holidays, parties, and any other reason to be festive. I love celebrating birthdays, beginnings and ends, milestones, anniversaries, and everything in between. I enjoy celebrations because they force me to focus on someone or something other than myself. They allow me to just be happy,…

The other day, I experienced a strange moment. As usual, at the end of my son’s baseball game, I had to just sit there waiting for help while everyone around me was busy packing up snacks, folding chairs, and gathering all of the equipment required for Little League spectators.

This week marks the end of the school year for many schools in my area, and therefore, the beginning of summer. I was recently chatting with a large group of friends, whose children are different ages and attend different schools, about everything we’ve survived during this unprecedentedly difficult school year.

As my Friedreich’s ataxia (FA) has progressed, I’ve had to make adjustments to accommodate new symptoms. Since my 2013 diagnosis, I’ve had to intentionally account for countless modifications every day — step by step and movement by movement. As part of my duties as an FA patient, I go…

As Mother’s Day approaches, I can’t help but pause to reflect on what this holiday means to me. I love celebrating my mother. Not only did she give me life, she gave me a wonderful life. She is a fundamental member of the village I need to get through…

Since Friedreich’s ataxia (FA) entered my life in 2013, I have spent a lot of time blaming it for getting in the way of the life I had planned. I would no longer be able to be the fun mom who did cannonball contests with her kids, or…

Life is made up of moments — big and small, good and bad, expected and unexpected. Some argue that life is defined by the big moments, while others say it is defined by the little ones. I believe that character is revealed through our reactions to all of these moments,…

Since my Friedreich’s ataxia (FA) diagnosis in 2013, I have chosen to openly share my journey with this progressive, degenerative disease. I share updates about both the physical and emotional changes in my daily life as dictated by FA, on social media, in columns, in text threads, and in…