Someone asked whether males are more severely affected by Charcot-Marie-Tooth (CMT). I thought about how this seems to be true in my family. I have CMT type 1A, as do my father, son, uncle, sister, brother, nephews, nieces, and cousin. We think my paternal grandfather had CMT, but was undiagnosed.
Through her loosely autobiographical graphic novel, “El Deafo,” author Cece Bell introduces readers to her childhood self as she tries to navigate her way through relationships and hijinks at school while managing her deafness. I write “loosely” because Bell…
My sweet cat, Shadow, hasn’t left my side in days. I have been experiencing increased joint and muscle pain due to my Charcot-Marie-Tooth (CMT) and changes in the weather, particularly the colder temperatures. Sometimes, I think that Shadow knows when I’m feeling unwell. Though Shadow can’t understand why I’m…
“I like your shirt.” I didn’t expect to hear such a comment while wearing my Charcot-Marie-Tooth Association (CMTA) T-shirt. It happened twice in the past two months, and when I turned around I didn’t find a fellow CMTer, a…
Ugh! I twisted my arm, and now I need to see a specialist. Several years ago, I fell off my bike and dislocated my right elbow, and I still have issues with it. The other day, I went to pick something up and twisted my arm the wrong way. Now…
I leave strange footprints. Luckily, I usually walk on solid ground and don’t need to think about them. Most days, I only encounter paved streets and driveways, carpeted floors, and grassy fields. And I like that. After all, anything that can assist with stability is…
Listening to the song “Things That Make You Go Hmmm” by C+c Music Factory got my wheels turning. There are times when I wonder what in the world people are thinking. I have Charcot-Marie-Tooth (CMT) and mobility issues. That means I use a cane at times and have a…
“Askew,” a work of art by American painter and sculptor Roxy Paine, stands just outside the West Building at the North Carolina Museum of Art. It’s an almost 50-foot, tree-like metal structure, with a trunk and…
I was recently reminded why I avoid the grocery store on a Sunday morning: the crowds! I find it difficult to navigate a crowded store, especially when there are shopping carts and other items blocking the aisles. This is not only an issue at the grocery store. As my Charcot-Marie-Tooth…
At the start of 2019, I knew little about Charcot-Marie-Tooth (CMT). My lack of knowledge about the disease meant that I had gaps in understanding of myself, a person with CMT, and a beneficiary of a wider disability rights movement. I owe much of my growth this year…
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