Columns

Mid-August is generally recognized as back-to-school time for those with school-age children or who work in education. Our television programs are flooded with commercials for the latest and greatest in children’s fashion trends and the new must-have school supplies; our inboxes are full of promotions and sales; and there’s a…

The other day I was listening to a podcast. (I think I’m addicted to podcasts.) The interviewee had post-traumatic stress disorder (PTSD), though she preferred that it be called post-traumatic stress injury (PTSI) because she felt she was having a normal reaction to a horrendous trauma. During my years with…

“Yeah, that was not me. It was you.” I finally said it out loud after all these years. I was not the first person to recognize that our daughter Amelia, then 4, was experiencing symptoms of Friedreich’s ataxia (FA); it was my husband. He noticed things that I, despite…

Sometimes life with Friedreich’s ataxia (FA) can feel smooth, all things considered. Now and then, the accommodations my disabilities demand or the adaptations my symptom progression requires don’t seem that intrusive. I feel like I am, for the most part, able to take part in my life. My participation…

A few days ago, I looked at vacation pictures from our trip to Hawaii in 2007. It was a wonderful vacation — not perfect, but fun and relaxing. We watched postcard-perfect sunsets over the ocean, framed by palm trees, glowing in pinks and oranges. We relaxed on the beach, swam…

I’m 100% dependent on mobility aids due to my current stage of Friedreich’s ataxia (FA) progression. Given that, there’s never been a shortage of reactions by others to my various walkers and wheelchairs. In my personal experience, most toddler boys are fascinated by anything with wheels, so I’ve…

This morning, like many mornings before it, I pulled out gym clothes as my all-day outfit. Gym clothes are comfortable and easy to put on. I work out most days, so gym clothes are a reasonable choice. This summer, I’m going for T-shirts and lightweight joggers. To me, that’s boring.

Being able to recognize your needs is a big sign of maturity. As a parent, I’ve had a front-row seat as my two young children, who have very different personalities, learn to recognize when something is “off” in their body. The Gottman Institute explains that anger is a secondary…

“This might be even better than a Kubrick,” I thought as “The Shawshank Redemption” appeared on my screen. I was FaceTiming with my manager, Ethan, and his son, who live in upstate New York — 1,461 miles from my South Louisiana home — and we were streaming the film…

I’ve been struggling with my mental health lately. I’ve been grappling with feelings of inadequacy rooted in my Friedreich’s ataxia (FA) and subsequent inability to be an independent and effortless helper in my family, integrally or physically. I’ve felt like a burden, incapable of benefiting those around me —…

It’s summertime, the season for travel. There’s so much fun at every stage: the planning, the doing, and the reminiscing. I love to travel, though I have Friedreich’s ataxia (FA), which means I need extra planning and consideration when I do it. Symptoms of FA include poor coordination…

A week ago, I woke up early on a slightly cloudy, humid Sunday morning. I had butterflies in my stomach as my husband, Dave, and I drove 40 minutes to a fundraiser for my patient organization. I have Friedreich’s ataxia (FA), a disabling and life-threatening rare disease. Dave has…