Lessons I’ve Learned from a Children’s Book About Charcot-Marie-Tooth

Charcot-Marie-Tooth. The first word is pronounced like “Shar-ko.” And it has nothing to do with shark teeth. That’s how Arlene, the protagonist of “Arlene on the Scene,” clears up the confusion related to her disease’s name.

“Arlene on the Scene,” by Carol Liu and Marybeth Sidoti Caldarone, was the first fiction book I’d heard of that featured a protagonist with CMT. And although I’m well past the age of its target readership, I picked it up recently and read it for the first time.

I wanted to get a different perspective on how CMT can affect the social life of a young child. And I was curious to see what message the authors offered to children and those affected by CMT.

The story revolves around a spirited young girl named Arlene who starts the fourth grade wearing ankle-foot orthoses for the first time. Wanting to avoid pity from her classmates and not be defined by her CMT, she resolves to run for a student government association position to be known for something other than the “girl with the leg braces.”

As Arlene campaigns, she encounters challenges with a rival candidate, juggles social obligations with friends, and learns valuable lessons along the way.

Although the book is pretty darn good as mere entertainment, I was particularly interested in the words of wisdom the authors imparted to their young readers.

As I’ve thought more about my struggles with identity and CMT, I’ve wondered if there was a way to sum it all up. What would I choose to emphasize if I could pass on one suggestion from my experience with CMT? And because I think we learn many of life’s lessons as children, I looked to the character of Arlene.

While I don’t want to give too much of the plot away, toward the end of the book, a character expresses amazement at how much Arlene accomplished during her fourth-grade year.

Arlene’s response is, “A lot of people look at me, and they decide things, like about what I can do. But you can’t let one part of a person cover up everything else.”

As far as lessons from CMT experiences go, I think you could do a lot worse than Arlene’s words.

Folks with CMT are more than their disease. Sympathy, pity, and empathy aren’t equal.

We can all use a daily reminder to acknowledge the importance of seeking to listen to each other’s story instead of resorting to lazy labels and assumptions — CMT or not.

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