Now It can Be Told: Cinderella's MG

Once upon a time there lived a beautiful young maiden named Cinderella who had MG. Fact is, it was her screwy immune system that had condemned her to a lifetime of scrubbing the hearth and enduring the endless taunts of her cruel stepmother and stepsisters.

Cinderella tried hard to be brave, but as the years went by she became so discouraged that she finally shared her secret with her Fairy Godmother, though only after first swearing her to strictest secrecy, which is why you never read about this in any of the history books. Anyway, the two ladies agreed never to speak of the matter again— until that fated day the mailman brought an invitation to the ball.

"Not for me," said Cinderella and tore the invitation in half. "I'm staying home."

"WHAT?" Fairy Godmother almost tipped over a bottle of magenta nail polish. "No way, girlfriend, this is one gig you do not want to miss! Besides, I've lined up some really wigged-out mice and a dyn-o-mite pumkin..."

Can't Dance

"It's all I can do to scrub this darn hearth," said Cinderella, "and we both know I can't dance." Whereupon Fairy Godmother whipped a tiny golden wand from her right hip pocket and Poof!

In the end, of course, Cinderella did go to the ball, but what really happened when she got there ?

I know absolutely nothing about music therapy but the odds are pretty good that Fairy Godmother knew plenty about how music could benefit Cinderella's health, and not merely her enjoyment of living but also her nuts-and bolts, myasthenic well-being.

If you are a myasthenic you have, no doubt, already noticed the connection between your emotions and how the MG is manifesting. Too much happiness, too much grief, too much worry or anxiety, and it's only time before our bodies bail out on us, which is why I sometimes think myasthenics need music more than most people. We need to be reminded where home base is.

Private Sanctuary

By knowing the right kinds of music for us, we can create a private sanctuary in which to indulge, heal, vent, and even celebrate the same emotions which, if they are allowed to reach a point of excess, can scuttle our physical well-being. Indeed, the moment we feel that excess point approaching, what should we do? Head straight for the music!

Musical preferences being as personal as they are, though, we need to be honest about our individual tastes. There are those who can't get through the day without an hour of the Prajnaparamitra and there are those who swoon for Snoop Dogg, but that's OK, there are no "shoulds" here. Whatever our preferences, whatever our personal, cultural and emotional histories, all that matters is the effect.

In the popular arena alone, we can listen to Aretha Franklin demanding her due respect and feel our own courage solidify, our resolve strengthen. When Woody Allen curbs his dixieland clarinet just short of raucous to stay within the sweet, our flesh re-experiences and re-learns the benefits of moderation. When Carl Doy's piano sighs Clair de Lune there is little choice but to surrender to this visceral imperative for peace.

Zippier

As for strictly physical benefits, try this. Sit quietly for a few minutes, then put on some John Philip Sousa. Now focus on your breathing. Eight bars into the first march, twelve bars at most, and I'll bet your breathing has quickened. Notice your leg muscles, abdominal muscles, even your lip muscles. Just the teensiest bit tighter? And your heart rate? A little zippier, yes?

In other words, simply by listening to music, your increased pulse has sent nourishing blood whooshing throughout your body, and a very subtle, involuntary tightening of your muscles has helped keep them toned – microscopically, perhaps, but toned nonetheless, and for a myasthenic every single healthy muscle cell counts. If there is any such thing as "passive exercise," the right kind of music can provide it.

OK, so what really did happen at the ball? Did Cinderella fake it and try to dance the night away? No way! Some folks dance and some folks sit, and myasthenics quickly learn it's the sitters who don't get all pooped out. Clever girl that she was, Cinderella respected the limits of her body and let the music dance her.

And thus it was the following day, while everyone else in the village was nursing sore muscles and the effects of too much mead, Cinderella and Prince Charming could be found sitting quietly by the hearth, laughing and talking and getting to know each other—which was precisely why they ended up living happily ever after.

The Successful Myasthenic

For many years, Patricia Armstrong was well known to readers of MG News for her upbeat columns pertaining to coping with the idiosyncrasies of having myasthenia gravis. During the thirty-seven years since diagnosis, Patricia has worked hard to find her balance in life despite her generalized symptoms. It wasn’t easy; a former husband would never get the Nobel Prize for compassion since he was embarrassed and irritated by her condition.

Learning to make the necessary adjustments that MG requires, changing her dreams and setting new boundaries has made Patricia, in her own words, “one strong cookie.” Patricia has parlayed her unique MG experiences and those of other myasthenics into entertaining and interesting vignettes which strive to help others deal with life after a diagnosis of MG.

 

©2020 Myasthenia Gravis Foundation of California.