Worth All the Regrets | My Third and Sickest Burn

 

Burning Man saved my life when I desperately needed a reason to keep living with chronic disease and disability. I owe it for reminding me what it means to be a whole human.

I return each year to the event in Black Rock City, a city that rises from the dust and becomes Home to around 80,000 temporary neighbors for 8+ days each summer.

Yet I risk a lot by simply showing up because of my Ankylosing Spondylitis (AS).

My medications severely dehydrate me, I’m at greater risk of sunburn and heat stroke, and symptoms can flare without warning especially if I push too hard. I don’t know what it’s like to not have pain; inflamed lungs make breathing difficult even without inhaling fistfuls of dust; debilitating fatigue can suddenly overwhelm me; and my body is weaker every year, making it difficult to explore without a chaperone lest I become unable to make it back to camp.

In a city where survival is part of living, my decision to be there is radically dangerous and bold.

The reality that every Burn could be my last as my body deteriorates is an unsettling feeling. I don’t want to stop going to Burning Man, but I also fear the inflated odds that I could have a health emergency in the middle of a desert with no access to cell reception or internet.

And during my third Burn, those odds almost won. Three times.

Burning Man 2018 broke me on Thursday, six days into my Burn.

Wait, let me back up.

I was already breaking on the way into Black Rock City. The previous Friday, after pushing through pain and fatigue to help pack, load, and navigate the unusually law-enforcement-heavy route as a passenger; my brain shut off in the middle of a conversation and I slumped sideways onto a pile of hydration packs beside me. I slid in and out of semi-consciousness for thirty minutes on Gate Road (the temporary road into and out of Black Rock City).

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The reality of going to Burning Man with a debilitating chronic disease. The side people don't show on social media. I collapsed in the truck on the way into Burning Man this year. I couldn't hold my head up any longer. My brain shut down. And I very literally fell over onto this pillow on top of my hydration packs and was listless for an hour. Burning Man is where I go to live, to feel whole, to remind myself why I keep surviving. And my body is very much still sick, still struggling, still broken through all my adventures. This is the Burning Man I don't often show, where I crash. And where I do hate my inability to function like a healthy human. This is real. #burningman #gateroad #burningman2018 #beingcharis #ankylosingspondylitis #spondy #spondylitis #chroniclife #chroniccharis #sickAF #disability

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Strike one. That was the warning flare. I didn’t listen. Because darnit, I had a camp to help build.

Building a geodesic dome and a 10-foot high 30 X 30 foot steel conduit shade structure in the middle of whiteout dust storms for four days with four people is not the smartest idea for a severely chronically ill and disabled person. Or even for healthy people. But isn’t that why we Burn? Because it’s hard?

Geo dome
Our dome at sunset

In my state of exhaustion after those four long days of pushing far beyond my limits, I woke up Tuesday and took my daily medications. Except I accidentally took my nighttime medications.

At 10 AM.

On Tutu Tuesday.

I’m accustomed to brain fog, but brain fog on top of Playa-brain broke my Tuesday. I spent the day mostly comatose, flushing my system with gallons of water and peeing every fifteen minutes.

That was strike two. But I’m stubborn.

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I refuse to only show the parts where I'm alive at #burningman. I'm sick. I suffered. I fought hard. I lost nearly three days of functioning over the span of ten days. That means 30% of my burn was spent listless, lethargic, and only mobile enough to pee in my pee bottle. Halfway through the week I wanted to give up. I thought the burn had won. I had no choice but to accept that my body was in control of when I could move, that I couldn't push through fatigue even as desperate as I was to participate. All around me were people doing things. Doing the burn. And I was crouched inside a world of my body not being enough. And I faced the constant fear that "maybe this is my last burn." I broke. The burn broke me three times. And I survived. I'm a burner in sickness and in health, but that health is ever waning. Every burn tracks the progression of my physical demise. There's always next year for many. For me, there's only always this year. Ankylosing Spondylitis releases me as much as it confines me. #burningman #burningman2018 #brc2018 #blackrockcity #playa #beingcharis #ankylosingspondylitis #spondy #spondylitis #arthritis #chroniclife #chroniccharis #chronicdisease #sickAF #disability #disabledburner #survivor

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After “sleeping” nearly 36 hours, when I woke up on Wednesday I tried to restart my Burn and catch up on what I believed I had missed. And I promptly overdid it. I am an award-winning expert in overdoing it.

So I crashed – hard. Thursday morning I could barely propel myself the fifteen feet from my hexayurt to our camp’s Chapel. I was lethargic in a body barely able to hold my pee funnel inside the bottle and my head was too heavy for my neck to support. I floated in a dense fog, barely aware of the muffled voices and shapes all around me and wanting desperately to be held.

This wasn’t the result of drugs, but rather my body slowing way down like a computer with too many applications running and a surprise rogue virus.

The Playa was winning. All I wanted was to do things. I just wanted to participate. And I physically and mentally couldn’t.

Thursday was strike three.

As I floated inside my broken shell of a body in a dusty camp chair that day, I finally found space to unload my pain, distrust, disappointment, and hatred of my body into my dust mask. I sobbed wrenching dusty tears and mucky slobber into the fabric of my face mask, sucking in dust and my own mucus and sighing it out with each heave and release, silently screaming, roaring to the heavens to release my body from this torment and to let me feel ALIVE.

I felt like I physically didn’t – couldn’t – wake up all day. But it was also the day I finally woke up.

During the 8+ hours spent in the cobwebs in my head, I had some epiphanies. Most importantly, I realized I hadn’t yet arrived at the Burn. My fantasy world was still too connected to my default reality where I feel profoundly broken a majority of the time.

DSC_1121
Letting the Playa take my anguish

I realized that I was as much not in control of my experience at Burning Man as I am in my apartment in Sacramento, CA. You’ll learn quickly that if you’re trying to be in control of your own experience too much, it will ruin your Burn.

2018 was my first year camping with people instead of being on my own. Being immersed in a community that is constantly buzzing with active, abled people is much different than when I camp on my own and the only activity level I see is my own. Seeing my camp-mates get up early, go to bed late, and do it all again the next day was both tempting and traumatizing – it reminded me of my former life when I was the most active person there ever was.

This is something I’m still struggling to accept in the default world. But at Burning Man, the place I go to live and not just survive, I struggled much more watching my friends do things, and then do more things. It hurt to watch and to want to do things, and to be stopped by my body in the one place where I give myself permission to be and do more.

2018’s Burn was reminding me too much of the world I come from; where I experience more feelings of I can’t, I’m not, I won’t be, I’m so broken; than feelings of I can, I am, I will be, I’m whole in my brokenness.

Two years prior, Burning Man had given me radical permission to find myself again; to run, jump, and play even while living with the pain of my body. I came to expect it would be that way every year; a world away from my worst pain where I felt whole even in my suffering. I made the mistake of expecting that in 2018, the same year I helped start a camp: Religious As F*ck.

I had sacrificed a lot to pursue the exciting vision of making this camp happen, which I had wanted to do ever since my first Burn. I had thrown all my energy into building something out of nothing, which left no room for caring for my body and my health. I burned myself out before I could get my own Burn on.

And I didn’t think about it until my body was betraying me. I’d been so focused on pushing through the pain that I hadn’t considered making room for my own playtime, respite, and rejuvenation. I had been waiting for the Playa to remind me that I’m a whole human, but I hadn’t been paying attention to what was right in front of me.

When I realized that the people surrounding me were my community and my family who were willing to help; when I realized they could be a big part of making my Burn happen, my Burn got better. When I realized that I had two choices: slow the f*$k down or keep pushing and be airlifted out, the Burn got better. Not perfect, but better.

I slowed way down. I asked for help more than I am comfortable with. I relied on camp mates to be my pushers, when I couldn’t ride my bike, in a transit wheelchair borrowed from [thank GOD for] Mobility Camp. And it turned into an amazing experience in letting go and letting people in. I swallowed the fear that I was becoming a burden on my amazing family and instead focused on what we were experiencing together in a dusty city where anything can happen and nothing ever happens how we expect.

I still watched with envy as others did things, but I also invited myself into their plans and saw their eyes light up when I asked for their partnership in including me. If I was camping alone, this family of camp mates wouldn’t have played such a big part in making me feel whole again. The Burn definitely provides what we need, if we let it.

wheels
Campmate John pushing the transit chair with me in it

Thursday taught me about looking at the Playa from a different angle, literally. That transit chair taught me a lot about learning to radically pursue help and simultaneously being enough. And it also reminded me that Burning Man will find a way to bring to light the fact that the wheelchair you knew you’d need, but didn’t bring, will often show up anyway.

For future Burns – fingers crossed – I’ll definitely need that all-terrain wheelchair I knew I would need, but didn’t bring, to conserve energy (stay tuned for a crowdfunding campaign so I can buy the right wheelchair for my needs!).

2018 broke me. There’s no need to sugarcoat it. Every Burn is a mark on my life’s timeline – measuring my body’s progressive loss of function, year after year. There’s always next year for many. For me, there’s only always this year. So I have to make each year worth it.


I always face regret during the consequences of pushing my body too hard through something that gives me a reason to live. But I always look back on those regrets and compare them to the thing I did – and they are always worth it. Worth all the regrets of having chosen to really live.

Charis - sunrise
Sunrise on the final day


Do you also live with a chronic disease or other considerable health issues? It is recommended that you talk with your doctor about precautions for your specific health needs, should you consider attending the event.

I do not consent to unsolicited medical or health advice at this time. Thank you in advance for honoring and trusting my ability to care for and make decisions about my own body.

Read about my first Burn.

Read about my second Burn.



If you found this post useful in some way, please consider supporting my writing with a $3 tip at ko-fi.com/beingcharis. Your support can help me buy that Playa wheelchair I know is waiting for me.

Fuck AS
I wrote hundreds of names of people who have AS on this banner I made to burn in the Temple
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8 thoughts on “Worth All the Regrets | My Third and Sickest Burn”

  1. There are times when these bloody conditions raze you to the ground. Because it allows you to rebuild yourself and just sometimes rise like a phoenix from the flames. Fly, my friend!

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