Burning Man and My Disease

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.

Sculpture by Laura Kimpton

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.dsc_5996_smart_copy_copy1

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.dsc_6246_dxo1

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.

From http://www.burningnightscrps.org

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.

My father, 2015 (Thanks, Ankylosing Spondylitis)

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.

“Oid” Sculpture by Michael Christian

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.dsc_68052

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.dsc_7164b_copyb_copy1

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.

33 thoughts on “Burning Man and My Disease”

  1. My first year at Burning Man, 2014, I had serious pain from an L5 herniated disk. I am forever grateful to the Mobility Camp and their art car night tours of the Playa art – even now, I could not get out there on my own. There are folks in their camp in wheelchairs. Burning Man is for ALL of us! Thanks for writing this article! CeLe


    1. Hi Carolyn, I am so glad you know about Mobility Camp! I stopped by their camp this year to learn more – I’m so glad there are indeed people who work to make Burning Man truly for all.


  2. Thank you so much for sharing your story.
    Burning since 2003, I have seen and learned many things, but your post taught me about my assumptions about disability (my own, yours, and others). Your words make me even more grateful for my own experiences on the Playa.
    I hope to have the pleasure of meeting you out there next year.

    CenterCamoCafe/Cafe Village


    1. HoneyBee, thanks so much for this sweet comment. I really appreciate it more than you know!
      And I hope to see you next year, too. I camped alone this year and am unsure what next year will bring.


  3. So sorry for your pain (spent a year at 40 on your McGill index). In your fotos you look so beautiful. So did basically everyone on out that softly lit playa. Ever notice how there are so few shadows there? All that dust. Anyways, i realized “welcome home” said to you at the entrance is a magic spell that makes everyone a brother, sister, friend, lover. 70,000 people. We’re not our infirmaries or outward appearances. For a week we revert back to what we really are – family.


  4. hey, thank you so much, Charis, for sharing your story. i wish you and your siblings the very best with the grieving process you must be in now. how amazing that your father left during the Temple Burn.

    i have fibromyalgia and other pain/chronic illness issues. my first Burn, in 2000? i was so scared that i was pushing myself past what i could handle. and i’d just come back from a few weeks working on a nonprofit in West Africa. i figured the combination would do me in.

    instead, it did me… out? up? beyond? i had a brilliant time, and have been back 11 or 12 times. it showed me that with the right (amazing) people under the right (absolutely over-the-top) circumstances, my illness was simply one more piece of my big life puzzle, just like everyone else’s big life puzzles. it wasn’t the defining factor. i’ve had good Burns and bad Burns, years when my disability was really a problem on the Playa, years when it wasn’t.

    for me, the success of my Burner self — who was bizarrely capable of weathering long drives, bad sleep, big storms, serious muscular effort, and questionable substances — brought into question the nature of my illness itself. years after my first Burn, i developed toxic mold illness. it was hard to diagnose and difficult to deal with, but at last i had an explanation for why my symptoms actually improved during Burning Man compared to regular life. not only was i in an environment where people were unquestioningly helpful and certainly didn’t judge on any physical problems i might have, but i was in a severely alkaline desert devoid of moisture, sleeping in vented tents with lots of air moving through.

    and at the Temple i was always allowed to work through grief, and to help others do so.

    how much healthier could something be?

    so nice to hear that it was that way for you, too. i hope i’ll meet you on the Playa someday. i hope to go back in 2017.


    miss magdalen of mystical mayhem
    Burning Tarot


    1. Beautiful miss magdalen of mystical mayhem (Burning Tarot), thank you so much for sharing these pieces of your own story with me. I’m so glad there is a space for anyone to be at Burning Man, especially those of us who struggle with severe, debilitating health conditions. To feel whole again was/is such a healing experience. Let’s see if the universe allows us to find each other in 2017 for an embrace and time to breathe together. -Charis

      Liked by 1 person

  5. Great read, Check out “access consciousness” before you accept a diagnosis as a death sentence, There are many different energetic body processes used in healing. Good luck in your research. We all can heal dont ever give up


  6. I hear you, i have AS also, and burning man is on my bucket list. I’m soi happy to have read this, it gives me hope that I might actually get to go and experience it.


  7. Sending you so much love and light Charis. I’m so sorry again about this loss….. and your other losses. I can only imagine the weight of them all on your heart.

    I loved this piece. Thank you for writing so beautifully about Burning Man. Maybe one day I’ll be brave enough to go myself. Sounds like a transformative experience.

    Love and light, and peace to you.


  8. Awesome read! I am just recently beginning to silence the thoughts in my mind telling me not to attend events like Burning Man due to having AS. Cheers to you and your adventure!


  9. I pray for continued peace and angels to uplift you spiritually and physically❤ My biological father ended his life when I was very young because so little was known in the early 70’s about A.S. he only had alcohol to numb the pain….he was wheel chair bound and living in Alaska. I was so mad at him for years until I was finally diagnosed with A.S.;it was only then that I understood and found peace. I love the community of hope and sharing our stories on how we keep on keeping on. Inspiration is priceless. Thank you.


  10. Hi Charis, Thank you, once again, for sharing so much of yourself and experiences. I’m sorry (again) for your loss (father, I realize that’s complicated). Sounds like you had quite an experience at BM. Wishing your days continued to be filled with amazing adventures and encounters. btw, I’ve never been to BM, but as I watch your priest, I’m wondering why my children haven’t suggested that we go 🙂 Kindest regards, Rich


  11. Charis, parts of this resonated so deeply for me. Thank you for sharing your experiences through your writing. Your description of the Temple was beautiful – it created a deep desire in me to be there, experiencing it for myself. Great storytelling. Best to you.

    Liked by 1 person

    1. I just wanted to say thank you for your writing here. I don’t have AS but I have been experiencing what feels like debilitating pain from torn cartilage and joint impingement problems in my hip and ankles leaving it really difficult to walk, dance or exist without pain and this really gave me hope that I could still experience something like this and be okay. 💜


      1. Hi simplygraetful, thank you for your comment and for sharing a snippet of your own story with me. I have also found that so much about chronic disease and disability resonates across all conditions. I am so sorry you are going through so much pain.


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