Columns

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…

When I was in college, my goal was to work in professional sports in marketing or sales. Before I graduated, I worked in ticket sales for the Phoenix Suns basketball team and loved the path my career was taking. I had my foot in the door at the NBA…

As a mom, I am obviously around kids all the time. But not just my own. I am around kids when I take my children to school, T-ball, church, play dates, restaurants with playgrounds, etc. I encounter countless kids each week. As an FA patient dependent on a mobility…

On the long drive home from rideATAXIA Dallas, I asked the driver, my buddy Ryan, for his overall takeaway from our weekend trip. “I feel like I understand you and your life a little better,” he managed to say before we drove into a rainstorm and…

I want to give credit to this column, and the writing habit I have developed because of it, for some of the recent improvements in my personal performance. Writing doesn’t often come naturally to me, so I was hesitant at first about committing to a…

I love to cook. From an early age, I spent time in the kitchen helping or annoying my Nonna. Cooking is therapeutic, and I find enjoyment in the process. It feels good to create something for someone else to enjoy. Cooking requires patience, fun, and love, and it…

When living with Friedreich’s ataxia, one learns to accept “what is” and to celebrate small victories. For example, I have recently discovered that cleaning and tidying up around my one-bedroom apartment in Philadelphia is a very rewarding victory. I express this because though it may seem like a…