Columns

On Feb. 25, I attended the Fearless Mom conference at Lake Hills Church in Austin, Texas. There, I heard from Andy Andrews, the New York Times bestselling author of “The Traveler’s Gift,” “The Noticer,” and more. He said, “Perspective is how you choose to see things.

As of today, the status of Friedreich’s ataxia (FA) has changed from untreatable to treatable, thanks to the approval of Skyclarys (omaveloxolone) by the U.S. Food and Drug Administration (FDA). I still find it unbelievable that FA has a treatment. I’m reminded of high school, when one…

Before I was diagnosed with Friedreich’s ataxia (FA), I knew little about disabilities and nothing about rare diseases. I grew up seeing an accessible parking placard in every car my dad owned, but his disability was due to a gunshot wound he sustained while on the front lines…

Learning to live within your physical limitations is challenging, especially when the list is constantly growing because of Friedreich’s ataxia (FA) and its ever-progressing symptoms. Lately, I’ve felt trapped in my body, imprisoned by the notion of “can’t.” I’ve been adapting to and planning my life around…

I’m realizing that a Friedriech’s ataxia (FA) diagnosis is a family affair, and the stories I tell in my column, “Little Victories,” typically offer only one perspective. I tried to broaden that view when my sister Kiki shared her perspective in my column last month. She is…

I learned that I had Friedreich’s ataxia (FA) just a few weeks before I turned 25. The news came in a phone call, but without any description or explanation; instead, the diagnosing doctor said they’d scheduled me with a geneticist who would explain everything in more detail. The doctor on…

Last in a series. Read parts one and two. Since our family was complete and the pregnancy chapter of my life was done, I decided to reclaim my body and focus on physically fighting Friedreich’s ataxia (FA). In May 2018, I was communicating with a clinical…

As the audience gathered last week, again I asked, “Why am I doing this?” They sprawled comfortably on couches and beanbags as they waited on the slightly uncomfortable speaker: me. My friend Loren had asked me to speak to the students at his nonprofit, Hope for Opelousas, a…

Second in a series. Read part one. In 2013, when I was 25 and newly diagnosed with Friedreich’s ataxia (FA), the only activities that were no longer safe for me were running and wearing high heels. That was all going to change, and my list of inabilities…

Poetry has always been pivotal, even crucial, to my life’s journey. Maybe that’s fitting for a guy diagnosed with a rare disease. In one survey from 2017, only about 12% of adults reported reading poetry in the last year. My disorder, Friedreich’s ataxia (FA), affects 1…

Occasionally, a random and seemingly minuscule thought sticks with me and eventually consumes my mind. I’ve never thought of myself as intelligent, but I have always been hopeful that I am getting wiser as I age. Some of that wisdom reveals that not everything is black or white, up…

First in a series. As I continue my journey with Friedreich’s ataxia (FA), I’m frequently asked questions such as: “How long have you been going to physical therapy?” “When did you start the clinical trial?” “How long have you depended on a walker?” It seems that people…