Defining Yourself - a column by Jean Walsh

I try to keep FA from hijacking my health-related quality of life

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.

This Rare Disease Day, I’m celebrating my community

Imagine standing on top of Mount Everest screaming “Help!,” but the wind is so fierce that your words blow back and no one hears you. Could people do anything if they did? That’s what being diagnosed with my rare disease, Friedreich’s ataxia (FA), felt like. My parents and…

It’s time to stop apologizing for being me and having FA

Today I fell getting out of bed and into my wheelchair. Don’t worry, reader, I didn’t get hurt. It was a slow-motion fall. However, I was then stuck on the floor. Finally, after an hour of trying to get up, I called my husband, Dave. He works locally and is…

Measuring self-worth shouldn’t be solely based on a job

I am often asked a familiar but bothersome question: “What do you do all day?” When I hear this question, I instantly feel abysmal. It has never been asked with any intention of making me feel flawed, but it does. I feel like I have to take inventory of everything…

Who am I? Even with FA, I define myself — mostly

One thing I am, because I want to be, is a gardener. I love the feel of warm soil in my hands, the smell of jasmine, the beauty of a big peony bloom, and more. I’m also a Friedreich’s ataxia (FA) patient. I was diagnosed more than 40…