Finding Home With Chronic Pain at Burning Manby Charis Hill Patient Expert
"What do you do?" the person asked.
"I'm disabled," I replied.
"No. What do you do?" they repeated.
This stranger with streaks of dust down their legs and a crusty bandana around their neck really meant: “Who are you?”
Who I was in that moment was extreme pain and debilitating fatigue, but I also felt more alive than I had in years. This person did not mind that I am disabled. To them it did not matter if I was the queen of England or if I was wearing a unicorn horn; they wanted to know what made me me.
At Burning Man, one simple question: “What do you do?” gave an opening for me to learn how to love myself again.
Burning Man is an arts and alternative-lifestyle event in Black Rock Desert in Nevada. About 70,000 people build a temporary city — Black Rock City — every year the week before Labor Day. They show up to play, explore, party, gift, create, and survive in a desert with dust storms, extreme temperatures, and limited access to resources.
“With the weight of my disease off my shoulders, I am able to remember parts of me that are hidden beneath layers of grief over losing the body I once had.” -Charis Hill
As someone living with ankylosing spondylitis (AS), much of my life revolves around things I have no control over, like being incurable. My disease consumes my body with pain, fatigue, and stiffness in almost every joint; which seem like obvious reasons not to attend an event that requires radical self-reliance in an austere environment. Yet, Burning Man has become Home.
With spotty or nonexistent cell reception, Burning Man means no doctor, pharmacy, or insurance phone calls for eight days. It is a complete unplug from my default life and an opportunity to focus on myself.
When I was diagnosed with AS in 2013, I was teetering on the edge of collapse; the disease had already taken away so much of my former identity. No longer could I run marathons, play soccer, or work full time successfully. I was a shadow of my former self. I was so broken.
I had nearly given up on finding myself inside a sick, stiff, inflamed body. Burning Man changed that. I became whole again in the middle of a dusty desert with thousands of temporary neighbors. Life-changing moments can happen in unexpected places.
In Black Rock City, radical self-expression is expected. People can be whatever they need to be without fear. If I wanted, I could pretend that I am a fish and people would say: “Tell me what it’s like to be a fish, Fish.” It is in this context that, year after year, people hold up metaphorical mirrors for me to look at myself without judgment.
With the weight of my disease off my shoulders, I am able to remember parts of me that are hidden beneath layers of grief over losing the body I once had. I am still grieving, but also realizing I can merge parts from before with the new passions I have found, like writing and speaking.
Burning Man is where I choose to participate as much or as little as I want. It is where I choose what I do, who I talk to, where I go, and when I rest. I do not have to prove anything to anyone. This is a stark contrast to my default life where I am a professional sick person checking boxes on paperwork, passing lab tests, meeting with doctors, and filling prescriptions.
I realize not everyone can leave home for a week to find a Home like I have found at Burning Man. I rely on significant help to go and I recognize the privilege that comes with being able to go at all.
But I do not always leave my bedroom to find Home.
After my first “burn,” I realized I could access Home outside Black Rock City. I brought some Burning Man back with me to the default world.
I learned some things about what Home feels like and I want to share them. Maybe it will help others find Home in their own lives.
A feeling of fullness, as if my chest is expanding from within and may explode with contentment
Showing up and knowing, without a doubt, “I want to be here”
Feeling seen for my pain, struggle, passions, and who I choose to be
Freedom to have an adventure I am in charge of, whether it is outside my bedroom or in my mind
Laughing until I cry, crying until I laugh
Feeling safe, being vulnerable, being happy without guilt
Where I am, without a doubt, unabashedly me
Where I have permission to love myself fully and completely, exactly how I am
I find these “places” outside Burning Man all the time now. Home is something inside myself; it is a feeling, a hope, a dream, an experience, a place. Home is all these things and more; all it takes is being present enough to recognize when Home is happening and to grasp it in the moment.
At Burning Man I found a place where it was safe to break down. I found a place where people love me in my brokenness and I my grief. I found a place to find myself and be myself. I found a place to call Home. I hope others can too.