Columns

In a recent column, “Accountability Can Change Everything,” I gave credit to this column for helping me raise the bar in my personal performance by improving my awareness of the excuses I use to let myself off the hook. I have…

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Zeego mumbles in his sleep. As I type this, he is on the floor beside my computer desk, woofing quietly and moving his legs and paws slightly. I grin,…

I have this phrase in my head that seems to be on constant repeat. I can’t tell you exactly where it’s from or if perhaps I put these words together myself. But I can tell you that it is certainly a culmination of podcasts, books, and self-improvement talks…

When a person lives with a chronic illness, such as Friedreich’s ataxia (FA), they will do anything to find shortcuts and ways to make life’s daily activities easier. Taking the shorter walk home or taking breaks between events, for instance, keeps them from feeling fatigued.

The first time I broke the system, I was thrilled. It was a high I’d never experienced before — I felt that I had been cunning and sneaky. I wanted more of this feeling. I found a new goal in life: to always reach for the impossible.

Last week, I had the privilege of co-hosting a panel discussion centered around living with a rare disease. Biotech company Amicus Therapeutics invited my podcast co-host, Kyle Bryant, and me to facilitate a panel with three teenage girls, each living with a different rare disease.

In 2019, the world seems to be more sensitive than ever. We push this narrative on social media to be positive and be ourselves, but then we’re immediately judged when we are. Why would I “dance like no one’s watching” when everyone is observing and criticizing? No matter how cautious…

Last Sunday was Father’s Day. One dedicated day to honor each of our parents is not enough in my view. Parents are often role models who are always there for their children with unconditional love — this is particularly true of those who have a child with Friedreich’s ataxia (FA).

I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. This hat is too big, ugly, and dominating. I don’t feel like myself in it. It doesn’t feel right on…

My nomadic lifestyle was always something I loved about myself. For some reason, I memorized a senior quote when I was flipping through my high school yearbook. I don’t even remember whose senior quote it was, and I didn’t know why it mattered to me so much. Looking…

Some months ago, I went looking for a new apartment for my friend and me to rent together. Since I’m pickier than he is, we settled on a price range, and he agreed to go with a place of my choosing. My roommate is a smart guy.

On June 9, 2019, history was made on live broadcast television for the disability community. Ali Stroker became the first wheelchair user to win a Tony Award, receiving the “best featured actress” accolade for her role as Ado Annie in the Broadway revival of the musical “Oklahoma!” For those…