An oft-used quote at my alma mater is: “From the outside looking in, you can never understand it. From the inside looking out, you can never explain it.”
This year I went to Burning Man, an arts, music, and alternative lifestyle event/”festival” in Black Rock Desert in Nevada. Upwards of 70,000 people come together every year the week leading up to Labor Day to party, play, explore, gift, create, and survive in the middle of a desert complete with dust storms, extreme temperatures, and limited access to resources. You just have to experience it.
Aside from a desire to engage in a society where clothes are optional, costumes are revered, and money is virtually outlawed; I needed an escape from my life which, in short, has never been easy. I needed the spiritual retreat my priest experienced at his first Burning Man in 2015.
My initiation as a virgin to Black Rock City involved hugging a naked man, hitting a gong, and rolling in the dust. Immediately, I was Home.
I went to Burning Man intending to spend time at the Temple, where people leave things they need to release: prayers, tokens, fears, celebrations, memorials. There are weddings, funerals, meditations, and services; people crying and hugging and others alone in silent introspection. It seems the Temple consistently attracts a larger crowd than any other place in Black Rock City. It’s a place to take a breather from partying, to find a safe space from an overwhelming emotional experience, to celebrate or remember, or just stop and feel. As with all things Burning Man, the Temple does not stay. We cling to its temporal nature and wait for it to be set ablaze the final night, cleansing us of whatever we left there. It’s a symbol of transition and release.
Aside from the physical enormity of Black Rock City and the pulsing energy I did not expect at the Temple, nothing else surprised me.
I rode a bicycle covered in an odd assortment of lights and unicorns. I peed in a plastic bottle at night. I jumped on trampolines and explored welded art installations during white-out dust storms. I blessed strangers in the middle of the night while sipping on whiskey and apple juice. I attended an Episcopal church service at the Temple after three hours of sleep. I wrote “I love you” in sharpie on the Temple wall and I shared a picnic at Trash Fence while the sun was setting. I watched the Man burn amid raucous cheers Saturday night and I cried through the silent burning of the Temple the next night. And yes, I spent as much time as possible not wearing any clothes.
At first glance, this is an apt description of many a Burner’s experience; all that’s missing is dancing all night and perhaps some experimental drugs. But I am a minority at Burning Man. I’m disabled and sick – really sick. I won’t be dying tomorrow, but I don’t know what my health will be like next year, and the next after that. I didn’t go to party. I went to be saved and to be reborn.
In 2013, I was diagnosed with a disease I inherited from my estranged father – Ankylosing Spondylitis. Though not rare, AS is not well-known. According to the McGill Pain Index, AS is almost as painful as childbirth and slightly more painful than fibromyalgia, phantom limb pain, and nonterminal cancer.
AS is characterized by rampant, widespread inflammation throughout the entire body. Extreme fatigue is common because the body is constantly fighting the inflammation. Movement helps decrease stiffness, yet too much movement can leave me in bed for days or weeks. I am stuck in a vicious cycle, ever trying to find a balance between movement and rest.
At best, AS is an annoyance to those of us who try our best to ignore the constant pain. At worst, AS leaves us with progressively debilitating pain and stiffness and, in extreme cases, with a hunched back fused together with knobby bone spurs. A “young person’s disease,” AS is commonly diagnosed before the age of 30, though it takes an average of a decade or more to be diagnosed (if you do the math, many of us have symptoms as young teenagers or even sooner). Its invisibility often leaves young, healthy-appearing people trying to explain or even hide their constant pain and fatigue, even around friends and family.
At Burning Man I felt more human than I feel in my ordinary life. When people asked me what I do for a living and I responded, “I’m disabled.” Their response was, “No, no – what do you DO?” I was caught off guard. I was struck that my disability was not seen as a detractor from my humanity. I was reminded that I am not my disease. “What do you do?” really meant “Who are you?”
What’s more, when I began talking about AS people actually listened. They didn’t try to fix me or tell me what I should do to treat it. Strangers didn’t judge me when I broke down in tears in the middle of a conversation, or rush me when I couldn’t find the words in the middle of a brain fog. It was a stark contrast to the “real world,” where I am defined by everything I cannot do or be. Burning Man slowly began to heal the wounds I have sustained from a constant barrage of new symptoms, diagnoses, disability denials, and reminders that my health keeps me from being successful in the working world. For a few days in the desert I was able to celebrate the whole, complete person I am. I began to remember that I really love me.
I didn’t partake in drugs like marijuana, acid, heroine, and other such things that have been hailed as magical to the experience of being Home at Black Rock City. Rather, I took my nightly prescription medication: a handful of pills and supplements to help me sleep and to feel slightly less pain. Everywhere I went I carried my medication and my cane. I wore a dog tag around my neck with emergency information. I gave in-case-I-don’t-make-it-out-alive instructions to one of my friends at home. Nothing was going to keep me from going to Burning Man, even though I was scared I might not come back.
I survived Burning Man. I more than survived, the burn saved me. It reminded me why I’m still alive and gave me a reason to keep living.
Unbeknownst to me, Burning Man also prepared me for the sudden death of my father. On the ride home, with the return of cell service came the news that he was very ill from complications after spine surgery. I screamed myself to exhaustion out of the car window into the darkness of the highway. I screamed in anger that I didn’t know him, that he gave me this horrible disease, and that he might die before I got a chance to have some questions answered. I didn’t know then that he was already dead. I would find out two days later he died the night the Temple burned.
Next year I’ll take him with me – some of his ashes, pictures, and the nearly-full carton of cigarettes he left behind. I’ll leave him at the Temple and I’ll watch him burn as I am reborn again, and again, and again, until there is nothing left of us both but dust.
I ask that if you know my siblings, please do not contact them regarding the death of our father as we are each handling this event in our lives in different ways and some of us need privacy.