Category Archives: beauty

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.

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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

Dorothy’s Oranges

Dorothy has an orange tree in her back yard

Seedless

Sweet

Ripe and ready last week

Far-reaching

Heavenly

The tree groans and shrugs under the weight of full, ripe, juice-running-down-fingers oranges pulling nutrients from within her aged spine of a trunk

A giving tree.

4419-MMS-1443156449716-attachment1-20150924_183634-1Loving our neighbors means sharing our oranges

Because when we have an abundance of fruit, why let it go sour in our back yards?

Dorothy loves her neighbors

Dorothy is a sweet orange

And her sweetness extends beyond the last morsel of citrus – there is always more, and next year the tree will be full again

Sharing the sweetness of our gifts is not a rotten pursuit

 

Tomorrow I Am Famous

For 60 seconds I will be famous. On the runway, the catwalk – whatever surface my heels will be wobbling on as I make my legs appear longer than they are and my heart less frantic than it will be. Few in the crowd of celebrities, photographers, stylists, and designers will know my name, but for 60 long seconds I will be the one everyone is looking at. It doesn’t matter to them who I am, and that’s ok. I’m there to sell clothes.

But I’ll be selling something else, too. I’ll be selling dreams and awareness for those living with incurable chronic diseases.

For the five hours before I take the first bold step on that plank runway I will be backstage interacting with dozens of people – models, makeup artists, hairstylists, designers, stylists, photographers, and producers. Many of these people will see me as another model who wants to make it big in fashion. I’ll be another face to paint, another head to sculpt, another frame to drape and dress. I don’t blame them. That’s why most models walk in big fashion shows – to make it big. But I’m not in this to be America’s Next Top Model.

I’m in this to share my story. I’m in this to bring fashion and sickness together in a powerful way that changes people’s perceptions and awareness of invisible illnesses.


Backstage while I’m getting hair and makeup done, there is plenty of time for conversation. Continue reading Tomorrow I Am Famous

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