Let’s Talk About How This Isn’t About Me While Also Talking About Me
What you read here is a lie.
I don’t always know what life looks like from the outside in, but I know that most of us can never tell what’s really going on in someone else’s. Even when we share a lot online. Even when we write a column about it once a week. (Hello, thanks for coming.)
Outside in, you’d probably think the previous weekend was pure joy and fanfare as my nonprofit Company 360 was honored at the Kennedy Center in Washington, D.C. But you’d be wrong. Well, actually, you’d be right, but there’s more to it.
Someone might see how my episode of the TV series “My Last Days” premiered on stage (it will air on TV later this year) and think, “Does everyone get an event like this?” But to find the answer, you’d have to look more closely.
During filming of the episode in late 2019, I kept (adorably?) angering the crew by trying to make it about Company 360 rather than me. “This is about you,” they’d say nicely, and with reason. Or, as we were planning the poster for this recent event, “It’s OK if it says your name.”
And I’m not pointing this out to be like “Oh my gosh, I’m so modest and so great!” because ew (but also, I’m definitely doing that a little bit, and it’s gross?), but rather to say: If we make things about the community that holds us up, then that’s what it slowly becomes.
So, the previous weekend, when the episode finally premiered live and our dancers took the stage, it was surreal to consider that what could have been just a screening and some praise became an intense panel about sizeism, sexism, and sickness discrimination in the arts and beyond.
It needed to be bigger, because it’s been far too long for dancers of all shapes, sizes, and sickness to be prevented from taking up space, and that needs to change. Thankfully, the powers that be were kind enough to let us take up some space, and their ability to see how much more important this is than just having one of us made me — yes, me — feel more seen than anything else.
But where is the truth and where is the lie? The truth is that even if we look from the outside in and think, “Aren’t they so lucky,” we are missing the unseen details. The late-night FaceTime sessions and the lighting tech overspecifications. The hours and hours of consoling dancers worrying about what to wear afterward. (Body suit and jeans were the general consensus.) And the ceaseless, senseless amount of hard work they (and everyone) contributed to something that would become just a moment in time.
One chance. Seven minutes. The dance was done.
But there is more to it. There was the break-in that happened around midnight the night before, shortly after my husband arrived in the nation’s capital with my car. Thieves shattered the car window and stole most of his belongings, including laptops, clothes, and Company 360 intellectual property for which we have no insurance, leaving us attempting to perform at the height of our game the next day on about four hours of sleep. (And since this is a column on a cystic fibrosis website, and I sometimes forget I am a sick person and should write about being one, that’s actually tougher than you’d think when fairly unwell.)
You don’t see the dancers who might have been worrying about their body the night before or overcoming past disordered demons. You don’t see the arabesques that don’t feel high enough, or the fights with a loved one, or the fights with ourselves. There is always another side. A sacrifice. A point of pain. A feeling of rejection. (A $500 car deductible we can’t meet because that’s all I make in a month.)
There is no such thing as luck. Two weeks before our big night, I was in the hospital. Two days after the show, as I write this, there is a surgery soon to come. Beautiful things aren’t made because it’s easy, or we are better than someone else, or we “deserve it” more. Beautiful things are made from breaking, and then trying again. From leaning in more, even if we think we know the full picture. From making someone feel seen, even if their dream is different than our own.
We can go from standing in the rain waiting for the police (and going to bed after the sun was already up) to dancing on our dream stage in 24 hours.
What you read here is a lie, sure. But it’s a beautiful one.
Want the truth?
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, and are intended to spark discussion about issues pertaining to cystic fibrosis.