I know you wiggle your butt, shimmy your shoulders, or do that awkward head bob with the overbite when your favorite song comes on. Music has a way of moving us, even at times when we are completely still. Dancing is a powerful expression of bodily ownership. Yet when our bodies scream or our spirits crumble under heavy loads, the last thing we want to do is be present in our bodies in such a visceral way, or partner dance with, God forbid, people touching us where even the gentlest of pressures can ignite a fury of pain that makes you want to scream.
Such an avoidance has been utterly non-optional for me in my pursuit of reintegrating my brain with my body after an aggressive flare up of my autoimmune disorder, Spondylitis, I danced as a child and grew up with musical family on my Dad’s side. In fact, dancing again has been one of the most healing things I’ve done both emotionally and physically.
And while I could go on about what the act of dance means to me, I want to talk about the community I’ve found in it for a second, and why as people with invisible illnesses we need people who don’t know what it means to live with our challenges.
Yes, you read that correctly. Not everyone in your life needs to know what it means to be you to offer you care and support. What they do need is to be empathetic and act in your best interests because, hey, you DO have something to offer the world besides your struggles. And because that is the care with which we all deserve to be treated. While the pain shapes our experiences, they in no way amount to the sum total of who we are.
This past weekend I helped put on a one-day Lindy Hop workshop with other talented dancers on the board of our non-profit. It sounds impressive, but it’s the result of a three-year journey to learn to really, truly, feel alive regardless of my pain. These people know my passion for movement, for dance, for music, but only recently have I been willing to talk about the other things I experience in my body for fear of being treated as fragile. One of my biggest fears has been my immune system and back issues interfering with special opportunities in the dance world, and this weekend it finally happened. In the middle of the third class of the day, my back started spasming uncontrollably and I had to excuse myself to deal with it, moving to just outside of the bathrooms of the event space and laid down on the carpet.
The first person to notice was another regular in our scene, but someone I wouldn’t say I’m terribly close to, and not one of the people I have previously been open with about my condition.
“Are you okay,” he asked.
“Not really, my back is spasming,” I replied.
“I can get you some ice if you want,” he said.
I started to protest, and then realized the ice would serve me far better than my pride. Perhaps I could finish out the day. “Yes, actually, that would be great.”
He goes back to the kitchen and a short while later, comes out with three frozen Gatorade bottles, explaining there was no ice machine and this was all he could find. I thanked him and proceeded to use those suckers like a foam roller, letting the cold calm my spine.
It helped, but wasn’t enough to get me moving comfortably on my feet, and I had already popped ibuprofen and a handful of other pills to combat the pain. The final class ended and I felt shame and despondency, resigning myself to an evening of self care instead of participating in the dance held by the other Swing Dance group in town, and a late night event, something I had worked up to allowing myself to enjoy in the past couple years.
As I said my goodbyes to the people there, one of my friends pulled me aside and asked if a massage would help. “I want you to be there, it won’t be the same without you,” she said.
“I’ll meet you at your house in a bit,” I replied. I wasn’t ready to give up.
A short while later I was face planted into a pillow on her floor, her thumbs and elbows working their way through my muscles. After a while, she brings down a fantastic heated shiatsu massager gadget and I lay on that for a while longer. I’m fed, and then I feel human enough to put on a dress and makeup and show up. I don’t dance much, and I don’t dance my best, but I don’t regret anything.
I know that very few, if any, of these folks understand what it’s like to be in a constant state of fear from unexpected pain, or constant pain itself, but I don’t think I want them to really get it either. While the solidarity amongst those of us with these invisible illnesses is irreplaceable and necessary, the people in my life who aren’t privy to that perspective bring out other beautiful things in me, and I’ve decided on being open to letting their kindness and vibrancy be contagious when presented to me.