On My Own Two — Young Lee

When Bernadette Scarduzio, a Charcot-Marie-Tooth disease (CMT) patient-advocate and star of the CMT documentary “Bernadette,” was in the midst of filming her documentary 10 years ago, she often thought about all the celebrities that appear in movies and on television. She wondered if any of them shared her…

Let’s talk about disability fashion. Word on the street is Gen-Z killed skinny jeans. The ritual of stretching your pant legs over every contour of your thighs and calves before leaving home is apparently over. I’m not shedding any tears. I’m just one guy with Charcot-Marie-Tooth disease (CMT) in…

With great effort, a woman pulls herself up from a wheelchair and into the back seat of a car. Her body is weak, and she can’t seem to move her legs. She wasn’t always like this, though, unable to walk and barely able to fight. No, she was once a…

I got a new handicapped parking placard a few weeks ago. Two, in fact, as the old one had expired. I even splurged on nice plastic covers to protect them. Why did I feel the need to get new placards? Although I have Charcot-Marie-Tooth disease (CMT), a condition that greatly…

I have a memory of my brother and me from at least two decades ago, when I was a small child. My brother and I are relaxing on the couch at my grandparents’ house. It’s a lazy afternoon, and the two of us are just lounging around. But…

My brother, 14 years my elder, tells me he remembers once losing track of 6-year-old me during one of our family trips to Washington, D.C. Specifically, it was at the Lincoln Memorial while it was fairly crowded. He tells me that when he found me moments later, I was in…

“No, it’s not really my thing,” I responded to a friend and self-admitted “gym junkie” in college when he offered to show me the ropes in weight training. These days, I regret turning down his offer. If life were a video game, my friend’s offer would have been the…

I’m a pretty happy person living a very relaxed life. Nevertheless, some of my memories make me cringe, cause me grief, and prod me with regret at inopportune times. When I think about my archive of memories, many of the not-so-lovely moments are colored by Charcot-Marie-Tooth disease (CMT). Sometimes…

People often say that toddlers love the word “no.” While I don’t have any children of my own, all of my experiences interacting with toddlers tell me those folks may be right. For toddlers, “no” is a simple word that can be used to express discontentment when things don’t go…

When I started cleaning my place, I thought I’d finish in one evening. I didn’t think that was an unreasonable expectation. An evening is how long it usually takes. However, after vacuuming just my bedroom that Saturday evening, a sense of exhaustion came over me. My feet ached, and when…

I don’t love having Charcot-Marie-Tooth disease (CMT). In fact, if there was a surefire way to rid my body of its symptoms, I would certainly be interested. However, my life is still filled with joy, hope, and a whole lot of fun.  Sometimes I wonder if…

“But you’re not really disabled.” I’ve heard those words, or words to that effect, a few times in my life.  Folks have always said this to me with good intent, seeking to give me hope and encouragement as I manage the symptoms that…