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Living with an invisible, rare disease poses challenges, opportunities, and many lessons. I was diagnosed with Charcot-Marie-Tooth disease (CMT) type 1A as a toddler, and I’m now approaching 49. Those early memories of life with CMT are murky, but I recall visits to our local children’s hospital, where my…

When a batter hits a baseball in just the right way, the impact makes a sound that’s pretty darn satisfying. It’s the distinctive “crack” that many folks think of when they think about their favorite baseball highlights. It’s the sound associated with evenings in packed stadiums, cold beer,…

If I’m going to wield a weapon and fight in a war, I want to be conscious of the intricacies of the weapon I’m supposed to wield. And I’d certainly want to know which side I’m fighting on. A character in one of my favorite movies…

I had just exited the county building after getting my second shot of the COVID-19 vaccine and was making my way across the parking lot toward my car. Then I heard a man calling out from behind me. When I turned…

I’m no Gordon Ramsay. And it’d be insulting to actual professionals if I were to call myself a chef or even a home cook. However, I do feel fairly comfortable in my kitchen. I enjoy cooking,…

A long time ago, a friend asked if there was anything I wished I could do that was outside my ability, capability, or means. The question wasn’t prompted by familiarity with my Charcot-Marie-Tooth disease (CMT) or anything of the sort. Rather, it was…

I pointed the pistol downrange, lined up the sights, and pulled the trigger. But apart from a small “click,” the pistol in my hands didn’t make a sound. The gun did not go “bang.”  Many folks would be unnerved if a…

Standing outside a chicken hatchery, a man smokes a cigarette while watching his young son play. He and his wife are new to town and they both have been working at the hatchery segregating male chicks from the female chicks in order to make ends meet. It’s not…

For much of my life, I couldn’t imagine a better world for those of us with disabilities, rare diseases, and chronic conditions. I just wasn’t thinking about the disability rights movement. I didn’t feel like I fit into what I had perceived as “disabled,” and I didn’t really…

Four weeks ago, I heard some unsettling news coming from my radio. And when I turned to my Twitter feed, I saw disturbing images parading across my computer screen. At the time, I didn’t know what to feel or how to process what was going on. However, I…