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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…

When I was in college, Facebook groups and communities with names like “I want to punch slow walkers in the head” or “Slow walkers deserve to be kicked” were pretty trendy. Several of my friends joined such groups and proudly displayed their memberships…

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…