Columns

An old tree once stood beside a creek far behind my childhood home. It wasn’t on my family’s property, but because wild blackberries grew there, I was willing to trespass to get to the ripe berries. After eating a handful of them, I’d rest my back against the old tree…

I hear parents say it often: “I felt helpless.” Sometimes I’ll hear these words during an interview on the podcast I co-host, “Two Disabled Dudes,” while other times I’ll read them in blogs, on social media, or in other columns…

I was thinking of egrets as I landed uncomfortably on the floor after my wheelchair brake betrayed me. Well, it wasn’t really a betrayal, but rather my own fault for kicking the brake as I turned over while I slept. A few hours later, as I was making the always…

It’s almost unbelievable that we continue to be significantly impacted by the COVID-19 pandemic. In many ways, the effects of the pandemic are greater today than they were nine months ago. In March, I remember thinking that it would…

With the holidays approaching, it is a popular time to look back on the year and reflect on life. It’s safe to say that we all have had one of the strangest years ever. No matter where you stand on the political or religious spectrum, the world…

Before I was diagnosed in 2013, I had never even heard of Friedreich’s ataxia. I learned a lot during the diagnostic process as we assessed the viability of possible diagnoses to rule out. For example, I never knew there was such a thing as gluten ataxia, but I…

Knowing when to accept help and when not to is a regular challenge for those of us with progressive diseases. “Do you want me to push you down the hall to the kitchen?” my personal care attendant, a family member, or a friend might ask. This…

When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t “normal” for you. When I was 23, I began noticing that my balance was different than it used to be. I…

A large, old oak tree used to grow outside my bedroom window. A few weeks ago, it fell during the bluster of Hurricane Delta. The tree crashed down while I was less than 20 feet away, yet I slept through the fall, none the wiser. (If a tree falls outside…

I tend to focus on self-reflection and growth in my column, “Fighting FA.” I love having the ability to look at previous columns and pinpoint exactly where my headspace was at the time. Doing this validates a generous amount of growth, gently nudges self-reflection, and offers…

Special occasions make me introspective, as I have written before. On days when my Friedreich’s ataxia (FA) symptom progression is clearly noticeable, I take time to observe how my FA is affecting my current experience and measure it against previous years. This might seem masochistic or like I am…

I intentionally fell off the treatment table. A metallic taste filled my mouth as I thudded onto the matted floor with a crash, looking less like a superhero and more like a marionette whose strings were cut. My fall was neither steady nor…