Sign language and aerobic dance taught me a lesson in leadership – something I value as an ALS patient

 

Copying someone’s actions can be fun and help us learn new things. But imitation can also be dangerous, especially if you live with a serious condition such as ALS -- which I have. Many years ago, I learned a lesson in imitation while I was teaching a class in aerobic dance. It stuck with me because it taught me about the responsibility of leadership.

It was the early ’80s, aerobics had just been introduced by Kenneth Cooper, MD, and my newly opened wellness program wanted in on the trend. Since I was a fitness instructor with a degree in dance, we offered aerobic dance, which was right in my wheelhouse. The class proved to be popular and fun.

A new language

A hearing-impaired woman showed up one day and asked if she could join the class. I was delighted because only a few years earlier, while pursuing my degree, I taught dance and fitness at a college where a quarter of the students were hearing-impaired. That made learning sign language a must, and I quickly became a fluent signer.

So, using signs and related gestures, I assured the woman she was welcome to enroll.

Aerobic dance is similar to line dancing. I stood at the front with my back to the students, who stood behind me in several rows evenly spaced from each other. To the accompaniment of loud music with a strong beat, we performed routines with knee lifts, kicks, marches forward and sideways, and clapping. Normally, I’d call out the step sequences as we did them, but for this particular class, I also synchronized specific sign language commands with my directions.

For example, a sequence of four steps to the right, then a full spin right, would have me holding up four fingers while gesturing right, then making the “R” sign by crossing my first two fingers and twirling them in a high circle. And so on.

All went well, and a few weeks later, when the class knew the whole routine, I turned around to watch them. To my surprise, the entire class was not only doing the routine but also adding my use of sign language with each move. They were imitating me to a T.

As I smiled, chuckling to myself and nodding in time to the music, I decided not to make a big deal about their choreography embellishments. Perhaps they did them on purpose to help the hearing-impaired woman feel comfortable. Maybe I discovered a new and fun way to teach sign language, one that had health benefits as well. Or, maybe the hearing students didn’t realize the significance of the silent language they were expressing and were just copying me, their leader.

The class continued for several years until the aerobic world moved on to another trend. But I always remembered the power of imitation and, along with it, the responsibility of being a leader.

Copycat woes

Of course, the fitness industry had its own Svengali effect on me. I was constantly tempted to imitate the leading health gurus and the latest trends. I wore the same leg warmers, fuzzy sweatbands, and stretchy tops as my heroes. Tried the vitamins, diets, and energy drinks (which ended up giving me indigestion) that all the fitness magazines were promoting. Looking back, I realize my efforts were a waste of time and money. I should have stuck with just being me.

The ALS community has many leaders and followers. We have to be careful about whose advice we’re following. That’s the thing about living with ALS and the feelings of anxiety, fear, and desperation it can manifest. We risk imitating the wrong things.

As I wrote in my 2021 column “Why a Football Player and a Politician Are in My ‘ALS Inspiration’ Folder,” I don’t copy what the people on my inspiration list do. I copy how they do it. I know it’s not important to know what vitamins they take, the foods they eat, or the exercise routine they follow. Instead, I tap into their determination and passion for life.

For science-backed information about alternative and off-label treatments for ALS, check out ALS Untangled, a peer-reviewed website. Or read “Demystifying ALS: Separating fact from fiction,” an excellent resource on ALS News Today.

We’re all on our own journey with ALS, observing and learning from others, but don’t lose yourself on this path. Be courageous and be your best because I believe we can live well while living with ALS.

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Dagmar Munn
ALS and Wellness Blog

"Be inspired, but don’t copy."

 A version of this post first appeared as my column on the ALS News Today website.