Columns

My 11-year-old daughter, Amelia, has Friedreich’s ataxia (FA), and the impact it’s had on her body and our lives has its own gravitational pull. As is the case for most people managing a chronic disease in their family, FA is always present, even when it’s not the conversational centerpiece.

I recently complained to my husband, Dave, that taking care of my health is all I ever do. It isn’t, but that’s how I felt at that moment. Dave replied with some version of “I imagine it must be hard, but you’re worth it.” Of course, most of me agrees,…

I recently had an unpleasant encounter with a stranger who was overflowing with pity regarding my disability. In the end, she questioned my abilities with what seemed to be judgment disguised as compassion. I had my 6-year-old daughter with me, so I was extremely intentional with my tone, body…

The disease I have, Friedreich’s ataxia (FA), causes loss of mobility among other things, which prompted me to get a sweet service dog named Wendy. Last December, I took Wendy to the vet for her annual checkup. Like all of her previous appointments, Wendy kissed the vet, got…

It started as a simple question on our car ride home. “If you had a time machine, where in time would you visit and why?” The answers included typical kid responses — dinosaurs were mentioned — but my 11-year-old daughter Amelia’s quick statement made me catch my breath. She…

A recent struggle has been bothering me, even though, logically, it feels silly to get worked up about it. In the big scheme of things, it has no real impact on my life, yet it’s another reminder that I’m not in control of my body. My latest woe is about…

Note: This column includes a mention of suicide. Resources for help are listed at the end. I grew up with an unwritten rule that wasn’t taught by my parents but seemed to be what society expected: “Whatever difficulties you face, keep them to yourself. Everyone else has enough difficulties to…

The other day I decided to try watercolor painting again. That may sound like an extremely frustrating activity for someone who signs their name like a 5-year-old. No offense to 5-year-olds. Poor motor skills are one of the symptoms of the disease I have, Friedreich’s ataxia (FA). I’ve always…

Friedreich’s ataxia (FA) is a huge part of my life, like it or not. My disability due to FA is one of the first things people think or wonder about when they meet me. As much as that reality breaks my heart, I can’t do much to disassociate…

A while ago, a friend of mine with Friedreich’s ataxia (FA), a disease I also have, told me that she only plans one activity a day. That sounded like sage advice, but it was advice I haven’t been following in my own life. Last week, for example, I scheduled…

The rare disease community is full of unknowns. Due to the lack of research for many conditions, we often face uncertain outcomes or futures. Friedreich’s ataxia (FA) is no different, full of various symptomatic possibilities as it affects people in unique ways. As I talk and compare…

I recently returned from a fun vacation with my husband, Dave, and two friends at the Grand Canyon and Las Vegas. We saw a lot, ate a lot, and laughed a lot. At this moment, my quality of life (QoL) feels great. But that’s not the case all the time.