Columns

Since receiving my diagnosis of Friedreich’s ataxia (FA) back in 2011, I have attended two series of physical therapy sessions. I was an outpatient at the local University of Pennsylvania hospital branch in 2014 and 2017. Initially, when I went in 2014, I wanted to familiarize myself with…

Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, even with decent grades from college and grad school. I sent out hundreds of résumés, attended dozens of job interviews, and moved…

Sometimes I wish that life would slow down, and some days, I convince myself that it will. That’s probably not true, though. I tend to take on projects and manage my calendar in seasons. This method implies that a “season” of less work and fewer projects, a period…

It was a beautiful, sunny day in Southern California, and I was out with my mom and my grandma. We usually get lunch in town and hang out for a while afterward. Shopping, running errands, or visiting someone at their house — whatever we do, I love our time together.

As I mentioned in my previous column, my husband, Justin, and I like to complete our weekly chore of grocery shopping early in the morning. The two main reasons we started doing this are that we get a handicapped parking spot right in front of the building and we…

An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, nihilistic, and ultimately negative. However, I didn’t take it that way. Through the…

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.