My Darling Disability - a Column by Kendall Harvey

When I was diagnosed with Friedreich’s ataxia (FA) in 2013, my family and I had never heard of the disease. So we had a lot to learn about this new, lifelong character that was now a part of our story. My father, the kindest, wisest, and most generous and…

Lately, it seems like my journey with Friedreich’s ataxia (FA) has been a major focus of my life. Between sustaining three fractures in nine months, meeting new people, and refusing to let my symptoms dictate how I spend my time, I’ve had to accept and adapt to many…

At the beginning of September, I turned 39. As I enter the last year of my 30s, I feel both gratitude and resolve. Since I was diagnosed with Friedreich’s ataxia (FA) a few weeks before my 26th birthday, it is safe to say that the condition has been…

One good thing that came out of fracturing my leg this summer is that I’ve resumed physical therapy. I went to physical therapy once or twice a week from 2017 to 2023. We would work on everything. If I had an injury or problematic pain, we would work on…

The time has come for yet another transition in my journey with Friedreich’s ataxia (FA). Since my diagnosis in 2013, I’ve had to adapt to my ever-changing needs. As my disease progresses and I lose abilities, I need more assistance. I used a walker from 2018 until 2024,…

At the end of June, I sustained a fall that resulted in a leg fracture. It happened while boarding the plane home from a fabulous vacation with my husband, my children, and my parents. My son and daughter were very concerned about what, if anything, was broken. After we…

Enduring three fractures over nine months — my femur in September, my nose in February, and my fibula in June — has certainly taken its toll on me. Not only are fractures and recoveries disruptive, painful, and exhausting, but they’re also emotional for me as someone with Friedreich’s ataxia…

Lately, I’ve noticed a word used very frequently in casual conversations. It can have multiple meanings, depending on the context, but in my case, as someone living with visible differences, it seems to imply a problem. In public, I’ll hear kids ask their parents, “What’s the matter with her legs?”…

My family, including my parents, recently took a grand vacation. We started in West Yellowstone in Montana, where we watched a juvenile black bear hunt a squirrel, swim across a river, dig for grubs in a downed tree, and relax in the sun. We also saw waterfalls, canyons, thermal pools,…

When you have school-age kids, summer can be quite an adventure. Establishing sustainable and achievable routines that will serve me and my Friedreich’s ataxia (FA) is a priority when summer arrives to my home each year. Since we no longer have homework or alarm clocks to mind for a…