Columns

I Overcame My Hesitancy to Use Mobility Aids, and You Can, Too

One of the most emotional and heartbreaking obstacles to overcome with a progressively degenerative disease like Friedreich’s ataxia (FA) is the use of mobility aids. I know the struggles firsthand because I’ve been entirely dependent on a walker for nearly three years. I’m very open about my journey with FA,…

How I Hiked Down the Grand Canyon in a Wheelchair

“Are you sure you’ll be OK?” my three friends asked after they sat me on a picnic table, pen in hand and journal before me. It was 2006, and we were on spring break. The late afternoon sunlight wasn’t getting any brighter, and I knew they wouldn’t want me to…

Planning for Tomorrow Is Worth the Effort Today

It seems that the best time to plan ahead is always yesterday, or several hours ago. No matter how much thought or energy I put into planning ahead, it rarely seems sufficient. I suppose I should remember the alternative to not planning ahead at all; such a situation could easily…

Acknowledging the Anniversary of My Diagnosis

Historically, Aug. 19 is a hard day for me. That’s the day in 2013 when I was blindsided by a Friedreich’s ataxia (FA) diagnosis.  My emotional journey of advocating for myself to find answers to seemingly random neurological symptoms had reached a difficult, unexpected, and dramatic turning point. I was…

Let Them Try Out Their Wings

Happy August! I don’t know about where you live, but here in Alabama, instead of waiting until after Labor Day, school starts early this month. While August doesn’t tend to bring cooler temperatures in these parts, I hope that this time of year will bring not only much-needed routines but…

Sometimes I Just Want to Be Average

Everyone could see me grimacing uncomfortably. “Here we go again,” I think as I feel an uneasy lump in my stomach. I find myself back in 1999 in a recurring, unpleasant dream I have every few months. In the dream, I’m at my desk near the back of a seventh-grade…

Slow and Steady Doesn’t Always Win the Race

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…

‘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…