Columns

Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute. I don’t want to have FA. I want to be “normal.”…

“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old restaurant buzzed with the lunchtime rush, but the gathered members of the Louisiana FA community — five of us affected by Friedreich’s ataxia, along with those who had traveled with us — managed to…

I remember feeling overjoyed and honored a year ago after I received a package in the mail. It was a small box containing beautiful gold-knot post earrings and a note that said, “Will you be my bridesmaid?” It was from one of my closest friends, Erica. Without a second thought,…

“I can’t believe we found this,” I said to my friend Jennifer, holding the manila folder against my lap. “Do you think we should open it?” The sun shone brightly this spring day in 2010, but neither Jen nor I could see it. We were working…

Others. Community. Support. Help. Cheerleaders. These are the words that have been flooding my thoughts over the last couple of weeks. If you consider my writings, the podcast that I co-host, or the documentary film in…

This past weekend, I stepped back in time and visited my alma mater, Johnson & Wales University. I made the trip to attend the Providence Alumni Reunion Weekend with my husband, Justin. The event was in Providence, Rhode Island, about five hours away from our home in Philadelphia.

Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. *** Despite all of the challenges in my way, I choose to fight, to endure. I hope you do, too.

I love productivity. I have a strong disdain for being passive, or slow to move. If something needs to be done, I like to get after it quickly. There is certainly nothing wrong with moments of rest and relaxing activities. I enjoy a good movie…

“I can tell that you are really strong and that you can take it,” she said. “So I’m going to tell you like it is.” This is the first thing a Friedreich’s ataxia parent said to me when we first met. She had lost her son to FA a…

Living in a major city like Philadelphia, my go-to mode of transportation is the subway or the bus. My husband, Justin, has a car he parks close to our apartment to have available when needed. But if I am on my own or need to get somewhere close, I…

My eyes shot open in the middle of a pleasant dream. The scene was familiar: There was a pool, perhaps a beach? But the dream vanished shortly after I woke up. The light showing through the windows of the hotel room in Denton, Texas,…

I met up with my best friend for lunch last week, and he noticed I was in a bit of a funk. I could feel I was a little off myself, but I couldn’t put my finger on the root of my disconnect. As my friend and I…