If you’re anything like me, you spend a lot of mental energy thinking about “what might be” and dreaming about “what could be.” I’ve always had big aspirations, and I reach for the stars when I set my sights on something. I don’t easily give up or settle. I have…
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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…
“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I hadn’t seen them in over a year due to the pandemic, and in that time, they’d gotten engaged. When they…
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…
‘We’re All in This Together’
Welcome, friends! I hope you are staying cool and spending some quality time with those you love. I am so thankful for you and the part you play in this community. It’s July and super hot here in Alabama, where I live. My family and I have probably been watching…
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…
I’m no stranger to this question, but I wasn’t the one who posed it recently. Ever since I was diagnosed with Friedreich’s ataxia (FA) in childhood, I’ve dealt with its progressively disabling symptoms, including the transition from awkwardness to quitting sports to using a wheelchair — all during puberty.
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…
I pride myself on getting a lot done and being a productive individual. Although I enjoy some downtime here and there, I often feel pressure from my unfinished tasks or my never-ending to-do list. That pressure makes it hard for me to watch TV, especially a series I can…
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…
Tonight’s the big night. He’s been preparing for this moment for a long time. He will win. He has to. In about half an hour, I’d watch Damon Vincent’s first professional MMA fight. I’m not a big mixed martial arts fan. (I figure if I want to watch belligerent…
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.
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