“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…
On My Own Two by Young Lee
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…
Tina Trahan said she was sitting in a parking lot in May 2015 when she cried out to God, asking him to give her cancer. Cancer, she thought, offered a greater chance of survival than what a neurologist had just told her she had —…
A high school Spanish teacher introduced me to the practice of meditation. A few times a semester, he would begin or end his class with it. During these sessions, he would suggest that my classmates and I sit in a relaxed position, head on our desks or back straight, with…
September is CMT Awareness Month, and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). It’s rare that one of these posts gives me information I hadn’t heard before, but one infographic caught me…
“Maybe there will be others at the conference who will commiserate with me,” my sister said as we sat among our bags at gate B6 in Detroit’s Metro Airport. Despite being prechecked by the Transportation Security Administration hours earlier at John Glenn International in Columbus, Ohio, my sister…
Is It Me or My CMT?
My memories of physicians first explaining the details of Charcot-Marie-Tooth (CMT) to me are hazy at best. I remember something about nerves, and of messages having difficulty going from my brain to my extremities. I remember not feeling weak. But I also remember that the folks poking me and…
My Version of ‘Chongxi’ and CMT
“Chongxi.” It’s a Chinese term referring to the superstitious custom of trying to erase a misfortune by overriding it with a joyous event or feeling. I stumbled upon this phrase a few weeks ago when my parents and I were listening to an episode…
“If they’re really thinking about their audience, and if they provide water bottles, they’ll also have hand grips there,” my father said, as he drove my sister and I along familiar roads on our way to Whetstone Park — an old, beautiful community…
I was the only Asian-American on my college study-abroad trip to China that year. I couldn’t speak much Mandarin at all, but still, I could recognize the absurdity when a classmate suggested I hold up the sign we created that said in Chinese, “Please point us in the…
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