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Worrying can be such a waste of imagination. A friend recently reminded me of this common aphorism. Instinctively, it’s a sentiment I find agreeable. However, I often wonder what such a belief actually looks like in practice. Life, after all, is filled with ambiguity. How do we each find the…

My name is Amanda Knightly, but the internet knows me as Misa on Wheels. I got this name at my first anime convention nearly two decades ago, while cosplaying as Misa from the popular anime series “Death Note.” One of the fellow attendees I met that…

Last in a series. Read part one. Previously, I shared part of my conversation with disability advocates Lily Sander, a Muscular Dystrophy Association (MDA) National Ambassador and person with Charcot-Marie-Tooth disease (CMT) type 1E and hereditary neuropathy with liability to pressure palsies; and…

I was diagnosed with Charcot-Marie-Tooth disease (CMT) at 12 years old. Although CMT runs in my family, this was still a hard pill to swallow. To put it bluntly, I was so completely uninterested in having a disability that I decided to just ignore it. For a few years,…

First in a series.  Living with a disability like Charcot-Marie-Tooth disease (CMT) is difficult. It’s important not to minimize this fact. However, for some, a salve for the sort of negative feelings a disabled life can bring is connecting with the disability community to find solidarity in larger…

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…