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Finding My 'New Normal' at Burning Man With Ehlers-Danlos Syndrome

I recently got home from a whirlwind of a week at Burning Man. If you don’t know what Burning Man is, it’s incredibly hard to explain so I’ve copied this directly from the website. “…in the Black Rock Desert of Nevada. Participants join in the effort to co-create Black Rock City, a temporary metropolis dedicated to art and community.” There are huge art installations and totally fun and surreal things you can do, like ride a pirate ship through the desert, or sing karaoke 24 hours a day or find a two-foot tall driveable and edible cupcake — it was chocolate by the way, and so delicious! I should also mention that once you’re there, you can’t drive your car anymore. Only walking, bikes and “Mutant Vehicles” are allowed for transportation.

Driveable and edible 2-foot tall cupcake.
Driveable and edible 2-foot tall cupcake.

This is an event I have been attending on and off since long before my diagnosis of Ehlers-Danlos syndrome — even before my symptoms started to affect my daily life. But, when I was 23 and had just finished my first yoga teacher training, it was easy to ride around the desert on a bike, climb huge art installations, and sleep on a slowly deflating air mattress.

Now, I fear my SI joints will start grinding together after too much walking, or I’ll wake up with a back or neck spasm and be completely immobile. I worry that climbing in and out of a light-up pyramid that shoots fire out the top will make my knees subluxate. Before the event, I considered getting a mobility scooter, but because I can still walk, I’m finding it hard to use one for events like these even though I know it will save me spoons and allow me to do more in the long run.

Burning Man is intense. It’s a whirlwind. I was probably a little dehydrated, definitely sleep deprived and on sensory overload. Not to mention doing way more than I ever do at home in a single day.

I was doing pretty OK. We were seeing lots of cool things and having fun. And then I found myself in a tent with two other moms talking about The Tree.

“Oh yeah, so far that seems to be everyone’s favorite art installation.”

“Definitely. It’s got a gazillion LED lights on it. It’s so cool.”

“I think it’s way out past the temple, deep playa.”

“And you have to see it at night!”

The Frickin’ Tree. I had immediate FOMO. It’s too far for me. I’ll never get to see it. Yes, I could probably walk there just fine. The walk back would cause me intense pain.

And also… the Temple. Every year they build a huge temple. People go there to grieve and let go. People bring offerings that will burn at the end of the week. Pictures of loved ones who have passed. Items of significance. And they write all over the structure. Prayers, notes, poems, messages.

But to get to the temple is a far trek. And I didn’t think I could make it there and back and still be able to walk the next day. I started to flood with emotions. I thought maybe I wouldn’t get to the temple this year. I wanted to write on it. I wanted to leave a piece of this shitty year there and watch it burn. I wanted to spend time grieving what life was like before my body started to fall apart.

The next morning, I woke up in a funk and spent a day trying not to cry. But tears kept coming. I wanted to go to the temple and have a safe place to cry, to let it all out and my body just couldn’t take me there.

My two girls enjoying the desert.
My two girls enjoying the desert.

The next day Cap’n Billy and his Magic Bus (I’m not making this up) came to pick us up. It was to be an art tour for the kids. “We won’t spend much time in each place so we can see lots.” We did see lots which was super cool. Cap’n humored the parents and dropped us off at the temple. As soon as I crossed the threshold, I started to cry. It’s very quiet there. Lots of people were crying or resting or meditating. I walked to the center to have a moment of peace and was followed by my 4-year-old.

“Mommy, why are you crying? What are you letting go of? Why is everyone quiet?” Her voice got louder. “Why am I supposed to whisper, Mommy?” I took her over to my husband so I could have a moment. I found a sharpie and wrote “PAIN” on the temple. And then the horn honked telling us to make our way back to the Magic Bus, and the temple trip was done. It didn’t feel like enough time, but my tears did dry up after that.

I was able to spend the rest of the time playing — within my body’s limitations. I was able to laugh, to make connections with old and new friends. I was able to play like a kid. I was able to belt out “What’s Up” by 4 Non Blondes in karaoke.

Life is so totally different now, but I refuse to let it stop me from having these amazing experiences. I pray next year I will still be able to walk around Burning Man. And if not, I will figure out my new normal for Burning Man 2018.

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Photos by contributor.

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