If you don’t already know, pain is a deeply personal subject for me. I have been fighting ankylosing spondylitis (AS) since 2000, since I was 13. AS is an often-invisible, progressive disease that attacks joints of the body with painful inflammation. In severe cases, it can cause bone spurs to grow that can fuse the spine into a single long column of bone. AS can also damage multiple organs, including the intestines, liver, kidney, lungs, heart, and eyes. There is no cure.
I have made it my mission in life to do something about that ‘no cure’ part by raising awareness in all the ways that I can. I have been on the news, written articles, interviewed celebrities, represented patients at conferences and meetings, given speeches (including a TEDx talk), and testified in state legislative hearings and with members of Congress on Capitol Hill.
Recently I became a performance artist, too.
Each month, Crocker Art Museum in Sacramento, California hosts a themed ‘ArtMix’ night. In August 2017, the theme was Combust, inspired by Burning Man, and I was granted permission to be an interactive art installation. I named the piece ‘My Body the Temple,’ inspired by the Temple at Burning Man.
I wore a bikini, sat on a stool, blindfolded myself, and offered people the opportunity to write their invisible pain on my body.
I had performed this piece earlier in the year at the inaugural Sunday Street on Broadway in Sacramento, CA. In the middle of the experience I realized that for the first time in my life I was able to meditate on my own. In the midst of extreme pain, I had a reason to be focused, quiet and still. For the sake of art. For the sake of awareness. For the sake of becoming a canvas for people’s pain.
So my decision to do it again at ArtMix | Combust was a bit selfish. I wanted to find that meditation again.
My experience at Crocker Museum was more empowering and powerful than I expected.
Throughout the performance, I could feel the moment people realized they could participate, rather than just watch. But I could still feel their questions. Was I really giving them permission to write anything, anywhere? How should they interact with me once they were close enough to see me breathing? Was I…real? How could I be so trusting of strangers?
Let’s take this a bit deeper. Many cultures abide by an unspoken social rule that it is rude to enter a stranger’s physical space, much less interact with them in a vulnerable, intimate way. My experience is that we are not inherently taught to share our deepest thoughts with someone the first time we see them. My experience is also that our world is drifting farther and farther away from trusting strangers and even friends.
This performance was not just an opportunity for people to share their pain. This was an opportunity to explore why, and how, we trust or do not trust each other with our deepest selves.
Some people came and left during a flurry of interaction, and I would feel multiple people writing on me all at once for a few brief, quiet moments together. A few laughed and talked with their friends about what they should write. Others waited until no one was around and shyly picked the least viewed places.
“Can I really write on you?”
“You’re so strong.”
A few cried.
Some people told me where on my body they would write before the tip of the marker would touch my skin. Some people were timid and gentle. Others were jerky and powerful and quick.
During breaks when I removed my blindfold I was shocked to discover a crowd of people watching me. If you have ever meditated, you know it can be jarring to open your eyes and readjust to your physical environment. It is even more jarring to open your eyes to discover a crowd of onlookers.
After several shifts, my body was beyond overtaxed. And someone had spilled alcohol on me. And I think someone else spat on their hand and slapped it across my chest to see if I would respond.
But I didn’t.
I responded to two people – one was my friend Sofia, with whom I am co-starring in a documentary called Becoming Incurable. And the other was a guy who made me laugh. For the rest, I was an unflinching, silent canvas. A refuge for their pain. And hardly any of them knew, until later, the pain I carry myself.
What I experienced during My Body the Temple was intense and draining, but also life-giving. I was able to go inside myself to a place of calm, swirling stillness. I was able to be conscious to the external world but also closely connected to my deepest self. I felt tethered to the universe.
And I’ll do it again. It is a powerful way to do something good with this painful vessel of my own body. I’ll keep performing My Body the Temple because I want to give people permission to be weak, vulnerable…honest…loud.
I want people to have permission to speak their pain out loud. With me.