Category Archives: art

The Skeleton I Found at Burning Man

 

I attended Burning Man for the first time in 2016. It was the best thing that could have happened for me at that point in my life. I left feeling invigorated and revived, having reclaimed permission to love my broken self again.

I thought Burning Man had given me a new lease on life, but it had actually prepared me to deal with my dad’s sudden death. It was a blessing disguised by what had initially been a more exciting package.

Every burn is different. For me, 2016 was life-giving even in the face of my father’s death. So when I returned to the default world after the event, Black Rock City remained a beacon of hope. It had been my last hurrah before shit hit the fan, like my innocence had been left there.

I spent the next year slogging through continued trauma and unraveling stability. In many ways, the memory and distraction of Burning Man kept me going. My dad had died. I lost and couldn’t regain weight. Trump was elected. My healthcare was threatened multiple times by Congress. Cross-country travel to manage my dad’s estate was physically taxing. Changes in medications caused my appetite and weight to drop even further. And I entered the verge of homelessness.

I was desperate to return to the place that had saved me. So return I did.


The 2017 Burn could not have come at a better time. I arrived in Black Rock City the most broken I have ever been, with very little self-worth remaining. The three things I had managed to hold onto were hope, a shred of determination, and memories from the previous year. Continue reading The Skeleton I Found at Burning Man

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I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened.

If you don’t already know, pain is a deeply personal subject for me. I have been fighting ankylosing spondylitis (AS) since 2000, since I was 13. AS is an often-invisible, progressive disease that attacks joints of the body with painful inflammation. In severe cases, it can cause bone spurs to grow that can fuse the spine into a single long column of bone. AS can also damage multiple organs, including the intestines, liver, kidney, lungs, heart, and eyes. There is no cure.

I have made it my mission in life to do something about that ‘no cure’ part by raising awareness in all the ways that I can. I have been on the news, written articles, interviewed celebrities, represented patients at conferences and meetings, given speeches (including a TEDx talk), and testified in state legislative hearings and with members of Congress on Capitol Hill.

Recently I became a performance artist, too.

Each month, Crocker Art Museum in Sacramento, California hosts a themed ‘ArtMix’ night. In August 2017, the theme was Combust, inspired by Burning Man, and I was granted permission to be an interactive art installation. I named the piece ‘My Body the Temple,’ inspired by the Temple at Burning Man.

I wore a bikini, sat on a stool, blindfolded myself, and offered people the opportunity to write their invisible pain on my body.

Island
Image by Rich Beckermeyer, Rich Beckermeyer Visuals

Continue reading I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened.

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 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.

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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. Continue reading Burning Man and My Disease

Child Bride

Underneath all the layers

A girl sits

To find a smile on her shoulder

The mirror tells her so

It does seem odd

Amid the haunted laughter of her mother

To see a smile there

I Didn’t Want to Write Tonight

I didn’t mean to write this when I sat down in polite fury to compose a short Facebook post. I hardly ever mean to write half of what I write.

Some days the thoughts in my head are too overwhelming to unpack. These are the scary, lonely, transformative days that I just want someone I trust and love to hold me silently while my mind takes a trip through philosophy and time.

Silently. Carefully. Lovingly.

The times my thoughts are heaviest usually come after experiences and conversations with people I don’t know or haven’t seen in a while. I’m sensitive to even the most mundane interactions – and because my brain does not operate like a filing cabinet, my thoughts become disjointed and scattered like a portkey-gone-wrong in Harry Potter.  My brain operates like any flat surface in my home: there are piles of mail and bills and to-do lists and bits of fabric and things that lose their way in transit from kitchen to bedroom.

Perhaps you can relate: I often hesitate to unpack my suitcase after returning from a week away from home, scared of making sense of the objects and memories I’ve brought back in the form of dirty clothes, airplane napkins, postcards, and hotel toiletries; and scared of creating the piles of items I will have to eventually return to their proper homes in my apartment. Hours after actually unpacking – in the middle of going through some random shoe box I found hidden under my bed – I realize in addition to unpacking I’ve also washed all the laundry, done all the dishes, and cleaned the bathroom and kitchen.

Some days the thoughts in my head are too overwhelming to unpack, until I can find a place to begin to make sense of what holds me hostage in the hallways of my brain. Continue reading I Didn’t Want to Write Tonight

My Body’s Symphony

When you see me you see a picture of health. A young body. Eyes that shine through the pain. Even my doctor says, “So you’re healthy aside from your diagnosis of Ankylosing Spondylitis, so that’s good.” What an ironic statement.

I see a body in the mirror that looks like mine, but this is not my body anymore.  This body now belongs to someone else, it is a stranger’s body.2015-03-28 14.33.58

Look past my face.  Look past my beautiful face to the pain.  Slight outward signs, my physical insecurities, only wait for the trained eye to discover: discolored splotches of skin, a slight hunch, constant readjusting when seated or standing for long periods of time – indirect signs of a disease that causes far more insecurities than the clinical diagnosis on paper can possibly reflect.

Look at ME! Past the click bait, that fancy model pose that got you here. Here, a glimpse inside my twisted fate, my gnarly spine. I’ve got plenty of backbone, thank you, that leaves me in an ironically fragile state. Bone spurs take root and strike a nerve softly like the soft staccato of pianissimo on the baby grande, until my legs give way – the build up of a chord deep within (thudding along, a low F on the bass clef) until an avalanche of sound screams from within my joints. This is my symphony – all my cells screaming (begging), “Finale!” while the inflamed audience – the peanut gallery – screams, “Encore!” It must be raining today the way Beethoven has woven his angry Symphony number 5 in C minor through my body.  Or maybe Dvořák’s Symphony number 9 in E minor. Beautiful pain. Continue reading My Body’s Symphony

I choose to be beautiful

I choose to be beautiful.

Charis Hill image
Charis Hill image

I choose to have conversations with people who sit on street corners with signs that say, “homeless, hungry, please help.” Because, as J.K. Rowling says, through Dumbledore, “If you want to know what a man’s like, take a good look at how he treats his inferiors, not his equals.Continue reading I choose to be beautiful