Pondering My Body’s Limitations Has Brought Me Back to Dancing

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by Young Lee |

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A long time ago, a friend asked if there was anything I wished I could do that was outside my ability, capability, or means. The question wasn’t prompted by familiarity with my Charcot-Marie-Tooth disease (CMT) or anything of the sort. Rather, it was one of those silly, yet oddly profound, questions that friends bounce off each other during quiet moments together.

I remember not even needing to think before answering. However, the answer that reflexively came out of my mouth surprised me. I responded that I wanted to dance.

Curiously, I had never really watched dance shows or followed the latest trends. I didn’t ask my parents if I could take dance lessons. And if I ever found a piece of music particularly compelling, I was the guy who would rather sing along than move my body.

Looking back, I think dance popped into my head because I envied the way the dancers I knew seemed to effortlessly control the way they appeared to others. And I found the ability to exude confidence, strength, or sexiness at will to be appealing, rather than being passively accepting of how others perceive me.

But I always thought this skill was beyond my reach, because I’m amazingly clumsy. Oftentimes, my body moves in ways I don’t intend. And CMT has given me a bit of an awkward gait, weak ankles, and a propensity for spectacular falls.

Indeed, to this day, the extent of my dance experience largely involves wildly swaying my body in the midst of drunken throngs of people — something for my own indulgence and unworthy of anyone else’s audience.

Yet recently, I’ve been thinking quite a bit about dance. I’ve been reading and following the work of disabled dancers I admire. And I’ve fallen down a bit of a YouTube rabbit hole watching inclusive dance performances and following various stories. 

This has led me to question some of my preconceptions about dance, including what it is, what it can be, and who it’s for.

While growing up, I thought there were only a few ways to dance, and that dance was like martial arts, which I was familiar with. I assumed that the guidelines of dance were purposefully rigid, requiring metrics to determine what’s good and bad, and what’s dance and what’s not. 

But perhaps this was my assumption simply because it reflected my own prejudice of what defines confidence, strength, and sexiness. Maybe the dance community has always been more accepting and understanding than I had ever been.

And maybe the inclusive dance community can teach us to listen, to act with empathy, and to break down the structures and prejudices, both internal and external, that immobilize us.

Although I don’t imagine I will start regularly dancing anytime soon, I’m reconsidering things I had previously considered out of reach.


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.


Tracy L Roberts avatar

Tracy L Roberts

Thank you for your article, you openness is great!

Anneke, Duikmuisje avatar

Anneke, Duikmuisje

Thank you for transmitting your spiritual strength. People like you are indispensable. I wish you a lot of energy. GO FOR IT. Anneke

Anneke, Duikmuisje avatar

Anneke, Duikmuisje


Quote “I may have a muscular disease, but the muscular disease does not have me”
Let me introduce myself, my name is Anneke alias “Dive Mouse”. I am from the Netherlands, and there is a lot of water to dive in there!
I have the annoying form of HMSN, which is really a muscle wasting disease, but as I quoted above I may have it but I will not let it have me.
Normally I have to use an electric wheelchair, but fortunately I am able to walk short distances, but I do need assistance.
Every morning I wake up and think….”My God, how do I get through this day again”, as the pain and the fatigue are constantly present.
I was previously so active and have taken part in many sports, including windsurfing, skiing, mountain biking, distance walking and swimming, but as the deterioration of my muscles too hold, I had to change and accommodate my activities and find alternatives.
I was unable to continue with the majority of my activities due to the deterioration but in my mind I was constantly thinking and trying to find alternative activities, and this is how I came to diving.
I found a local dive school where I could try a dive in a pool, and as soon as I was breathing under the water with the tank on my bank I knew I was addicted to blowing bubbles.
I then had a goal, and that was to become a qualified diver.
I had to initially check with a doctor in order to start the PADI open water course, and the first doctor I saw, declined on the basis that if there was a shark that I could not defend myself, despite having healthy lungs and heart!
I would not accept this so found a well known and respected doctor who was a specialist in diving, and he was very positive and excited for me and approved my application after many extensive tests and examinations.
Two weeks later I was in Sharm el Sheikh in Egypt. I had studied the academics that I needed to complete before I arrived. I then started the course with another student and we both completed the PADI open water course successfully. I was so very happy and continued to dive and once I had completed 50 dives I completed the PADI Advanced Open Water course.
I am still diving after 10 years and I have just almost completed my 1200 dives.
Above the water I need help but when I am below the water I am ‘healthy’ and able to help others if they need it. Diving with a handicap like myself is definitely being “one hour healthy” under the water. I don’t feel the pain, the fatigue, and it all leaves me and my muscles completely relax, my heart and lungs are healthy, I can still dive with one buddy because I am still able to save my buddy in times of need If that no longer works, then I have to go diving with three buddies. 2019 I finished my cave diving course in France with some adjustments and that was really AMAZING.I have dived in Holland, Germany, Egypt and Malaysia, and there are many more places I just want to visit.
So my message to anyone with a disability is if you want to dive, just do it! What do you have to lose, you can only win.
There are many organisations out there that can (IAHD) help you no matter where you are from, for instance the International Association for Handicapped Divers and many more.
Anneke van der Werf alias “Dive Mouse”
So......GO FOR IT don't let the desease get you.


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