My Darling Disability - a Column by Kendall Harvey

One of the most frustrating effects of the progression of my Friedreich’s ataxia (FA) symptoms is how slow I’ve become lately. Physically, I do everything more slowly. Not only am I slower than I used to be, but also I am slower than everyone in my life. I talk more…

The word “hope” has been woven through many of my conversations lately, especially in the last week. I’m participating in a clinical trial, and I had my first in-person visit in nearly two years. I am supposed to go every six months, but flying across the country for an…

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,…