Columns

Thanks to Friedreich’s ataxia, I’m never more anxious than in an open crowd in a big space. While feeling hopeless and lost in space, a lot of mixed emotions and questions run through my head: “Will I be able to transport through the crowd OK, or will I lose my…

I have been working with my physical therapist, Kelli, for a year and a half. She is brilliant at what she does and has become a dear friend. I am so thankful to have her by my side as we fight Friedreich’s ataxia (FA) together. She was…

Drowsily and with great effort, I hoisted the top half of my body upright in the hotel bed. Before I drifted off, I groggily but sincerely asked my friend Sajid in the bed next to mine, “You ready for some real talk?” He was…

There is something magnetic and almost hypnotic about a bonfire, I thought, as the unexpected snap of a burning stick spooked us all. My small cluster of shadowy friends gathered this evening, one of the first cool fall nights in my sophomore year of college. The…

Over the past couple of weeks, I’ve had some good conversations with FAers and others about life. I was asked similar questions in each conversation, so I figured those topics must cross other people’s minds. Perhaps my answers can give you insight into my personality and who I…

Navigating huge crowds at major events can cause great anxiety. For example, going to an arena concert or an NFL football game can include encounters with crazy fans, rude comments, long lines, and difficulty transporting to and within the vicinity. I used to avoid major events because of those reasons.

Third and final in a series. In a previous column, I discussed the tests I underwent to diagnose Friedreich’s ataxia. “Kendall, I was afraid that this might be the case: You have Friedreich’s ataxia.” My doctor looked as shellshocked as us. He studied Friedreich’s ataxia (FA) in his…

It doesn’t make sense, and I’ve given up trying to figure it out. It’s a silly video sponsored by a chewing gum company that paid a man to travel the world and film himself doing his goofy dance in 42 countries.

In my hotel hospitality job, I can count on working long hours, multiple days in a row, and on holidays and weekends. I knew what I signed up for when I graduated with a hospitality degree and accepted that first job offer. The thing I didn’t realize was that I…

Second in a series. In a previous column, I discussed my active childhood and early signs that something wasn’t right. As the evidence began to pile up, I started to accept that someone who has been extremely active her entire life doesn’t suddenly become uncoordinated. I decided…

Last in a series of reflections on a recent vacation to Turks and Caicos. Read previous reflections here. “I began my vacation today,” Jake told me over video chat. That lazy Sunday seemed like a great start to a vacation. It was…

It’s funny how cliches about life have started to make sense to me. From my observations of other rare disease communities, I’ve learned that when we reach a certain level of acceptance about our disease we gain a different understanding of life. When expressing myself, I try to…