Existing in the tension between thoughts and actions, part 1

First in a series.

In their larval stage, sea squirts traverse ocean waters searching for surfaces to latch onto and make their home. It is only during this stage that they make great use of their brains. As soon as a sea squirt settles, it turns large portions of its brain into sustenance.

I hadn’t thought much about sea squirts before. I knew nothing about their life cycle until I read Bonnie Tsui’s book “On Muscle: The Stuff That Moves Us and Why It Matters.” The topic comes up during an exchange Tsui has with Daniel M. Wolpert, a professor of neuroscience at Columbia University, who uses the sea squirt life cycle to illustrate a point: “Brains are important only in that they allow us to move, interact, and exert our influence on the world.”

“On Muscle” explores this idea as well as others I found fascinating. The book provided a framework for me to consider all the ways our minds work in concert with our muscles to construct our sense of self and the world. It prompted me to look at my own body with newfound awe and wonder.

However, reading about the various ways muscles, mobility, and movement are foundational to the human experience reminded me of the struggles I face as someone with Charcot-Marie-Tooth disease (CMT).

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Mind-muscle communication

I agree that much of the way we experience life relies on our muscles responding appropriately to our brain’s signals. This is how, for much of human history, people transformed mental power into physical power, ideas into impact. It’s through this dynamic that we get stuff done, communicate and connect with others, and, for better or worse, provide a basis for how we’re perceived and judged.

This is why actors and dancers study the ways bodies move — not to exercise, but to learn to better communicate through action. They practice slight adjustments in their posture, facial microexpressions, and the smallest of hand gestures. The timing and execution of something as simple as a sigh can convey a lot. Even before many of us incorporated the language of physicality into our lexicon, we’ve understood on a visceral level that, in some inextricable ways, we are our bodies, our muscles, and our movements.

We jump for joy. We shoulder each other’s burdens. To describe complete infatuation, we say we are head over heels. When something disturbs us, we say we are shaken up. We use “flex” in reference to tensing our muscles, but also to describe exerting our influence and demonstrating competency. We lift another’s spirits. We muscle through tough times.

So what does this mean for those of us with disabilities that make mind-muscle communication difficult? Do our bodies blunt many life experiences that others enjoy? To what extent does having a disabled body affect the way others perceive us? How would we perceive ourselves if not for our chronic conditions?

There’s a part of me that desperately wants to find some good in every struggle, some comfort to cling to in every tragedy. But sometimes there isn’t a bright side; there’s nothing to romanticize. Conditions like CMT profoundly affect lives in ways we shouldn’t diminish.

Ultimately, the full extent of that impact is something each of us must wrestle with and reconcile every day.

In many ways, we are our bodies. Still, I believe there are many things that we, individually and collectively, can do to improve disabled lives.

At one point in her book, Tsui writes about a recurring nightmare she’s had in recent years. “I am suddenly helpless, unable to exert my will on the world,” she says. While this nightmare may be a reality for creatures such as sea squirts, humans never need to suffer such limitations.

We build communities, construct societies, and uphold structures as we see fit. The world we live in can be as ableist or as accessible as we permit.

And for those of us with CMT, it’s important that we move and exercise for as long as we can. Tsui writes that exercise is a way for each of us to meaningfully, with our full essence, grapple with our existence. For CMTers, exercise offers a way to directly challenge our disease progression, continuously test our limits, and celebrate all we can still do.

Coincidentally, shortly after finishing Tsui’s book, I jumped into R.F. Kuang’s “Katabasis,” a fantasy novel filled with characters who wish to forsake their bodies, living as entities defined only by thoughts. As a reading experience, it felt as if the books were in conversation with each other — each trying to grapple with the way thoughts and actions define the human experience.

Next, I’ll share my thoughts on “Katabasis” as someone whose chronic condition forces him to live in the tension between thought and action.

Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.