Columns

My family and I have always been religious, with strong beliefs, faith, and morals. My mother is Catholic and raised my sister as such. My father, an Episcopalian, raised my brother and me in his church. From elementary school to high school, I attended church and Sunday school weekly. I loved…

First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In the cramped seat of the plane, nothing was going right. Moments earlier, in the…

Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line at the rideATAXIA Philly event. The annual bike ride takes place in Southern California, Northern California, Dallas, Chicago, Philadelphia, and Orlando. This fundraising event seeks to empower…

“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and kitschy restaurant. My friend was used to me being melodramatic; the brutal somberness I’d conjured was juxtaposed by the checkered green tablecloth on which I…

Recently, I saw the following quote shared on social media. It stands out, particularly when I am making plans to go to various public places. “Ramps should be the standard. Automatic doors should be the standard. Elevators in…

  The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was in shock is an understatement. I was scared, overwhelmed, confused, angry, eager, and desperate. So, I am going to try…

“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing in his wheelchair. As they sat at a table in the mall’s food court, Mary had…

Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your birthday, not Mother’s Day — “just because.” At first, I couldn’t write a word without crying, but eventually everything spilled out so naturally. First…

Shoes are essential for making a statement on one’s wardrobe and personality. This is especially true for me as a young woman with Friedreich’s ataxia. I want to be able to fit in, yet still feel comfortable and safe. It’s been difficult to find a pair of shoes that best…

Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong. Oxford Dictionary’s definition of tired is:…

“Don’t hold a glass over the flame/Don’t let your heart grow cold/I will call you by name/I will share your road.” –Mumford & Sons. “Matt?” my professor repeated for who knows how many times, interrupting the imaginary…

It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete disregard for people with special needs in emergency preparation. I hadn’t been in an evacuation situation since before my diagnosis, so this was an eye-opening experience. The alarm went off at…