Columns

I had my annual Friedreich’s ataxia checkup last week at Children’s Hospital of Philadelphia, which hosts a Friedreich’s Ataxia Center of Excellence for patients and their families. I’m very fortunate to have this facility and my doctor right in my “backyard” of the city that I call…

I first encountered a service dog accompanying a person with Friedreich’s ataxia (FA) three years ago. I had met my friend and fellow FARA ambassador Andrea and she had her beautiful black Lab, Ramada, with her. I could tell right away that Ramada was more…

Is there ever a “right” time? I’d argue that this idea is mentally comforting, but the “right time” doesn’t exist. You can wait all you want, but that’s where regret begins to take root in your life and your lack of action begins to…

When my sister, brother, and I were younger, our parents would take us on trips to various museums. These memorable times included day trips to the art or science museums in our city of Philadelphia. On the weekend we would travel two hours to New York to see…

Earlier this year, I was extremely nervous about using my walker in public. Previously I had been able to “hide” the effects of my Friedreich’s ataxia (FA). I used shopping carts, friends, or strollers for stability. However, my FA progressed to the point that I needed more…

My unharnessed wheelchair swerved unexpectedly. I reached out to grab onto something so that I wouldn’t flip over. Riding in the back of my former wheelchair-accessible van was challenging. It had been adapted for a power wheelchair, but after grad school, with no big…

This past weekend was St. Patrick’s Day. Almost every bar, restaurant, and establishment had various specials going on all weekend since the holiday fell on a Sunday. The venue where my husband Justin and I got married, Washington Crossing Inn in Pennsylvania, hosts special events and also…

Sitting at my computer in my room, I barely noticed that everything had gotten dimmer. It wasn’t until I looked up that I noticed that one of the four bulbs on my ceiling fan was smoky gray and lifeless. I rolled my eyes at the slight inconvenience, then…

I’m convinced that we all think we’re unique in the following regard: Something about who we are, or our circumstances, excuses us from being better or from being the best version of ourselves possible. We’re all pretty darn good at coming up with excuses as to why…

This week, I wanted to do something a little different. As an FA patient diagnosed only four years ago and with no sign of a heart condition yet, I understand that not too many people can relate to my views on working out. My friend Joey has a…

Daylight saving time happened last weekend, and the changing of the clocks heralded in longer days and warmer weather. I am eagerly anticipating the first day of spring on March 20, and the new season cannot arrive soon enough for me. Although my home city of…

  I look forward to lazy Sundays. Nothing feels more familiar, more like my childhood, more like home. I brush aside any work or obligations, finding comfort in choosing to do nothing. So, whether I’ve been super productive and finished all my work earlier…