My Darling Disability - a Column by Kendall Harvey

As a Friedreich’s ataxia (FA) patient, my options for exercise are limited. I can’t go to kickboxing or step classes with my friends, and I can’t go for a run or a hike. While many popular types of exercise, such as dancing, high-intensity interval training, and the bar workout, are…

Dear 2013 Kendall, Your world was just rocked and turned upside down. I know you feel like your future is an impossibility now that Friedreich’s ataxia (FA) has clouded your blue skies. I am here to tell you that yes, that future is gone. But it doesn’t mean you have…

While Friedreich’s ataxia (FA) is a physical disease that happens to my body, I have noticed that my physical symptoms affect my mental outlook on life. I have always been the type of person that is part of the action. Whether I am the mastermind behind planning the fun or…

As the Fourth of July approaches, I’m thinking about the word “independence” a lot. At 32, my independence looks different than I’d once imagined. As a Friedreich’s ataxia (FA) patient, my body is progressively losing so many abilities. Most noticeable and problematic is my degenerating coordination and balance.

As a Friedreich’s ataxia (FA) patient well along in my symptom progression, I have a strained and emotional relationship with my mobility. Over the last three or so years, that same internal struggle has extended to my mobility aid. I am lucky that I lived a wonderfully carefree and…

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.