What Does It Meme to Be a Part of the CMT Community?

A few days ago, I found myself searching online for Charcot-Marie-Tooth (CMT) memes. While my actions might seem a bit juvenile, I needed a laugh. I was also looking for some insight into the CMT community — this group of people to which I belong due to the nature of my disease.

As I’m sure you’re aware, a meme is essentially a joke that can take the form of an image, video, or concept. However, unlike most jokes whose natural habitat is the oral tradition, folks create memes specifically for online consumption and intend them to be shared.

I don’t think that it’s wrong or inappropriate of me to seek community or kinship in jokes. For jokes to be funny, they must relate to shared experiences or mutual feelings between the teller and the audience. Jokes can strike us to the core of our identities. We laugh because we can relate.

I’m unsure of what it means to be part of the CMT community beyond that CMT affects every member of this global alliance. I’ve only had one opportunity to meet with my local Charcot-Marie-Tooth Association (CMTA) chapter. I haven’t met anyone else with CMT in real life in any other setting.

Forums and many online groups seem to exist to discuss diagnoses and treatments rather than ponder identity concerns.

I’ve enjoyed reading the many stories about CMT. I’m fascinated with the culture and concerns of the CMT community and the elements that unite each member. But I feel as if I’ve just begun to scratch the surface.

I sometimes wonder, “What does it mean to be a CMTer? What is the CMT community? What have I missed out on by not being involved with the CMT community?”

Looking for answers, I reached out to Jonah Berger, a member of the CMTA advisory board and director of Camp Footprint, the only camp program in the United States for teens and preteens with CMT.

I asked Jonah for his thoughts on what characteristics and attitudes are common in the CMT community.

“Stubbornness and grit,” he said. “CMTers are tough because we deal with pain and we keep going. We are creative. We are always finding new ways to accomplish things that others don’t need to think twice about. And, for the most part, we know how to laugh. We appreciate the joy of life because we know not to take it for granted.”

I yearn to see this for myself. To this end, I plan to involve myself in more CMT initiatives and meetings in the coming weeks.

What are our shared experiences? What binds us together? What’s your favorite CMT meme? Please share your thoughts in the comments below. 

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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 Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.