I am a liar.
OK, not in a bad way. As an actual profession, I am a liar.
As a professional dancer, it’s my job to “lie” to the audience in show after show by transforming into an entirely different character.
As a performer, it’s sometimes my job to lie to myself. I ignore my feeding tube leaking inside my costume or that nagging pain inside my chest because my only job is to portray a role outside myself.
But as a person, I lie in the most innocuous of ways.
“How are you feeling today?”
“Great. Thanks for asking!”
That’s a lie.
The real answer is far less socially acceptable: “Honestly, I haven’t slept in two days, and my prednisone dosage is making my chin breakout, and I keep erratically pooping blood on and off but … great. Thanks for asking.” Maybe that’s why becoming a character disconnected from my given body is the best sort of freedom, so much so that I’m often tempted to trade up when off the stage as well.
After traveling for dance recently, I found myself faced with the persistent paradox of how much to reveal when talking to strangers. Whether on an airplane or in a dressing room, there is something innately irresistible about leaving your cares (or leaky tubes) behind and glossing over the often unglamorous reality of life with a chronic ailment.
“I can’t believe you dance even though you’re Deaf!” audience members would marvel after shows.
“That’s the least impressive thing,” I secretly signed to my dance partner, who understands that dancing after the removal of various organs, the addition of robot parts, and the constant symptom-juggling can, technically, be harder than technique.
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The fact of the matter is that strangers don’t know any of these secrets when we first meet.
They don’t know I have a cystic fibrosis transmembrane-related disorder or some other gradation on the spectrum, discovered in a delayed and winding medical journey. They don’t know my digestive system is more inflexible than my hip flexors, nor that splitting time between mucus-clogged innards is trickier than splits. And, yes, they also don’t know that I am Deaf, after slowly losing my hearing the same as many other mucus mutants before me.
Instead, they (or at least the 6-year-olds in the front row) think I’m a princess in a pretty dress and, selfishly, I sometimes want it to stay that way.
Is it dishonest to keep the dirty details of my life quiet now and again? (And by dirty, I mean those sexy Pseudomonas of course.)
As a writer, I am pathologically transparent. As a dancer, I am perpetually transported through rhythm and role. But as a person — beyond the page or stage — can I pretend to be “normal” now and again, even if it’s not really true?
The fact of the matter is that even when I’m a Princess in the eyes of another, I (and likely those of you reading) know exactly what it’s like to be a Problem, too.
It means stains on the insides of every one of my leotards because my G- and J-tubes won’t stop adding bile instead of sequins.
It means barely eating until the show is over because I can’t risk intestinal warfare at the worst possible time.
It means being a fairytale one moment and feeling like a freak the next.
Beneath this glittering façade there are leaks and laments and lengthy scars that look nothing like the dancers we dream to dream, and yet … this lie is actually my life. The real life that I come home to at the end of the day, once the makeup is removed and lights dimmed to dark.
Even if I love nothing more than honesty in words or in the wings, sometimes I just don’t want to be myself. And maybe that’s OK? Maybe that “Great. Thanks for asking!” isn’t what we need to say, but what we need to hear. Maybe the smile we show on stage is the only way to smile at all that day.
Maybe we need to believe our mistruths and pretend normalcies because, in the end, a lie is just hope in a better costume.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.