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Because of my Charcot-Marie-Tooth disease (CMT), I’ve sat with more neurologists, researchers, orthotists, and physical therapists than many of my peers. I’ve also had to self-advocate when navigating the healthcare system in ways few of my able-bodied peers need to. And I’m familiar with the sense of isolation that…

Without direct ties to the research community, it’s easy for a patient to feel disconnected from the researchers who work to better understand Charcot-Marie-Tooth disease (CMT) in hopes of finding more treatments or a cure. A few weeks ago, in an attempt to learn more about CMT research, I…

I recently got new ankle-foot orthoses (AFOs). After losing a significant amount of weight over the years — in part because my AFOs allowed me to walk more — my previous pair no longer fit. The whole process went as well as I could have hoped. However, it brought to…

Those of us in the Charcot-Marie-Tooth disease (CMT) community face unique burdens, pains, and grievances that most others aren’t aware of. This is a topic that George Simpson, a volunteer at the Charcot-Marie-Tooth Research Foundation (CMTRF), cares deeply about. He believes that raising awareness of the costs associated…

Last in a series. Read parts one, two, and three.  While physical strength may seem narrowly and clearly defined, it intersects with many aspects of our lives. It’s a topic I considered with newfound fascination after reading “On Muscle: The Stuff That Moves Us and Why It…

Third in a series. Read parts one and two.  In a pivotal scene from the 1984 film “The Karate Kid,” Daniel, an energetic and impressionable teen, confronts Mr. Miyagi, an elderly neighborhood handyman and karate master. For days, Daniel had eagerly awaited Mr. Miyagi’s instruction, expecting…

Second in a series. Read part one.  Last year, the world lost a powerful voice in the disability community with the death of Alice Wong. Born with a type of spinal muscular atrophy (SMA), her life was not given much attention by mainstream media, and her ideas…

First in a series. There’s a part of me that can’t shake the belief that physical weakness is woven into the fabric of my identity. This realization surfaced unexpectedly after I read about Hafþór Björnsson, the Icelandic strongman and world record holder for the heaviest deadlift, who sports…

In 2024, part of North Carolina, my home state, was in the path of Hurricane Helene. With its powerful winds and torrential rain, Helene battered many communities. I was lucky I wasn’t in its path. In the aftermath of its destruction, many North Carolinians rallied in support of those affected.

Last in a series. Read part one.  In her latest fantasy novel, “Katabasis,” R.F. Kuang constructs a character who serves as both an oppositional moral force for her two protagonists and as a goal that her protagonists pursue to the farthest reaches of hell. That character is…