Columns

I can’t believe it’s February 2020! This is an important month for the rare disease community as we unite and acknowledge one another’s illnesses. Rare Disease Day falls on the last day of February — a rare month with its fewer days. It’s even rarer this time because 2020…

I have a chip on my shoulder from living with a rare neuromuscular disease. I feel the need to be accepted and welcomed by today’s society, and I set high expectations for the people I meet. But I have come to realize that people with disabilities need to treat others…

I was the weird kid who asked my mom to fix me a plate of spinach as an after-school snack. Most of my friends only ate spinach to appease their parents and earn the right to dessert. Don’t get me wrong: I love cookies and cakes probably more than most…

Those who know me know that I have little, if any, tolerance for poor service. I’m sure this is deeply rooted in my years of working in the service industry. I’ve worked in restaurants, hotels, and grocery stores. All three jobs put me face-to-face with guests and customers.

The world is still in shock over the loss of NBA legend Kobe Bryant. A heaviness lingers over Los Angeles, along with an overwhelming sense of, “What do we do now?” I can’t believe I am writing this column. I won’t talk about Kobe’s accolades or his accomplishments as…

Sometimes we need to take a break, to relax and breathe. Many stresses can affect young adults, including money, work deadlines, cost of living, and family issues, among others. When you add living with a chronic illness like Friedreich’s ataxia (FA), anxiety and worry can easily test you. The…

My physical therapist Kevin pushed a sofa to the middle of the room. I positioned my wheelchair next to it and transferred onto the soft cushions. Sitting there, I rolled my wheelchair — my safety net — away from me. It’s strange being away from my chair since it’s been…

We are wrapping up the first month of the year. Are you glad to be moving forward, or are you wishing time would slow down? The saying “Time flies when you’re having fun” doesn’t seem to need the quantifier of “fun” for me. Time does…

We’ve all heard about the monsters under the bed that keep us up at night. Well, the monsters weren’t to blame. I was having awful leg cramps. I would wake up from a deep sleep in excruciating pain. My middle toes felt as if someone was…

Have a case of the winter blues? Cold weather can make anyone want to hibernate under a warm blanket and never leave home. When living with Friedreich’s ataxia, nothing sounds more comforting than staying inside instead of having to leave and deal with self-doubt and insecurities. It doesn’t take cold…

I looked around and grinned. Our individual values are upheld by the people with whom we surround ourselves, and that made it incredible to be there. The corner office on the 20th floor of a building in downtown Philly was a far cry from home. The…

I recently wrote a column about trying something new, and I challenged readers and myself to get out of our comfort zones. I’ve been trying many new things lately. Well, not brand new things, but things I haven’t…