Columns

At my latest physical therapy appointment, I was out of my wheelchair and on the floor mats, struggling to maintain a “table” position. Mastering that position is the beginning of working on crawling more like a toddler and less like a mortally wounded soldier on the battlefield.

Thanks to Friedreich’s ataxia (FA), I have experienced the stress and turmoil of trying to hang on to strained friendships. After my diagnosis, friendships and romantic relationships were put to the test. It took me a long time to identify who was in my corner.

I was giddy that day, a month or two ago. So much so that I texted a friend, “Do you ever feel like everything is coming together, falling into place?” I received a text back. “Every day.” I chuckled at this response and rolled…

I feel like I’ve recently made a huge decision. To some, my choice may be a no-brainer, but others may relate to the tug of war I’ve had with myself. Whether you can relate or not, if you know me and my get stuff done…

The world celebrated Rare Disease Day on Feb. 29. Rare Disease Day is a global initiative to raise awareness for over 6,000 rare diseases that affect an estimated 300 million people worldwide. This year’s message was: “Rare is many worldwide. Rare is strong every day. Rare is…

The podcast I co-host, “Two Disabled Dudes,” is celebrating a major milestone this week: We recently broadcast our 100th episode! It’s been a wild three years, and neither my co-host, Kyle Bryant, nor I expected to make it…

When my children were born, I had an irrational fear that something bad would happen to me, and I wouldn’t be here to take care of them. As they got older, I replaced that worry with the fear that something would happen to them. As they became more independent and…

Mental health is a significant yet overlooked aspect of dealing with a chronic illness. While it may be taken into consideration, it’s not often treated with sufficient seriousness. Continual learning and adapting to a new way of living can be stressful. Losing relationships, adjusting…

Living with Friedreich’s ataxia (FA) has taught me to appreciate the little things. I was reminded of this when I discovered a new symptom of my FA journey: bladder control and the urgent need to use the restroom when away from home. Public restrooms have become a significant need in…

My teacher and my best friend’s mom talked amid the gaggle of parents picking up their kids from middle school. I was within hearing distance as they spoke, but neither one noticed. I remember my teacher remarking that the woman’s son and I used to do…

If you follow me on social media, you probably saw this column coming. In fact, I feel like I can’t write about anything else this week other than my recent travel experience. To be fair, I’m not writing out of frustration or anger, and I’m not…

I remember meeting my dear friend Mary for the first time. Mary also has Friedreich’s ataxia (FA) and is the mother of four beautiful children. Five years ago, I attended the annual Friedreich’s Ataxia Symposium hosted by the Children’s Hospital of Philadelphia. It was my first time attending the conference.