Columns

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…

Being a writer without the ability to write is a conundrum. I think about it often, especially when I write these columns. I never realized how much I wrote until that ability was slowly taken away. When I was younger, I loved to write. I would use every colored…

Marriage is wonderful, but it comes with challenges. When one partner has Friedreich’s ataxia (FA), the challenges may be overwhelming. Now imagine the second partner also lives with a chronic illness. My husband, Justin, has Fabry disease. Like FA, Fabry is a rare genetic disorder. It results in a…

Before I knew it, I was face down on the tiled floor. When I started to fall forward, seated in the handicapped-accessible shower, my arms made a last-ditch effort to grab onto the bench.  This plan failed. Without my arms to impede my crash, my forehead…

I’ve been thinking about the “bare minimum” in the context of guest or customer service. Many companies would argue that their success, or a healthy amount of it, is due to the extraordinary service they provide their patrons. This makes sense. In a world of plenty…

We made it! A new decade is here, and the atmosphere seems a little fresher. For now, at least. I hope everyone enjoyed their holidays and spent them however you wanted to, with or without family. My previous columns about the new year consisted of sharing my plans for…

Many people aren’t aware of how sensitive people with Friedreich’s ataxia (FA) can be about using a mobility aid. I struggle with feeling like a “minority” in society by standing out and looking different, so when people throw out negative words and actions, I feel awful about…