Last weekend I performed as part of Wellington Literary Crawl, an annual event showcasing the spoken word in unusual and exciting ways.
I was invited by creative director Jo Randerson to participate in RADtalks, a concept she came up with in response to the censorship that can happen under the traditional TEDtalk format.
My brief was – err, pretty brief. Talk about what you’re passionate about. What makes you angry. Say what you wouldn’t normally say. Say whatever you want. ‘That’s a bit fucking dangerous,’ I thought.
I wrote I think four or five rambling rants before I decided to focus on the experience of invisble pain. I also decided it would be a good idea to cover myself in red paint and get on stage in a bikini. Cool story, past Sarah. You’re brilliant.
By the time the day rolled around I was pretty certain I was going to either throw up or faint or both at once which would have been super messy, but all my angst was totally uneccessary. The audience was fantastic, the organisers were fantastic, my co-speakers Dr Mike Joy and Coco Solid were amazing, and James Nokise rocked it as our MC.
So. Scene setting. I was up first. Stage lights. Bikini. I have red paint smeared across my back and I’m facing away from the audience. This is my intro.
is a grand puppeteer
who does not speak but commands my body
who pulls me from joint to joint
who does not eat but cracks me open
splits my pelvis hip to hip
and grips again the strings in my spine
and it is I
who cannot speak.
(at this point I turned around)
Hello. I have Ankylosing Spondylitis. Yeah, I look ‘normal.’ I might look younger than 28. I get ID’ed all the time. I can walk, eat, talk. But my body is being consumed by degenerative inflammatory arthritis.
At 4am the other night I couldn’t sleep and I was sitting in my backyard smoking a cigarette and listening to Ani de Franco, getting real hipster and feeling generally fucked up and fucked off.
She has that song Not a Pretty Girl, where she says:
I am not an angry girl
But it seems like I’ve got everyone fooled
Every time I say something they find hard to hear
They chalk it up to my anger
And never to their own fear.
When I tell people I have arthritis they say “But you’re so young!” and “You don’t look sick.” They don’t want to know how this can be true. They change the subject.
It is proven that women are more likely to be assumed to be faking pain. Invisible illness is the leading cause of suicide, second only to be bipolar disorder.
When I first got sick, I didn’t believe myself. That’s how ingrained the need to see proof is. I convinced myself I was fine for months – right up until I was admitted to hospital. Then I looked down at my wasted, scrawny thighs in surprise and started to cry.
When I went home, I was supposed to get better. I was supposed to put on weight, and learn to eat again, and get strong enough to walk further than my bed to the couch. But I didn’t. It went on and on and on.
I began self-harming. Though I felt like I wanted to fade away, what I really wanted was for the pain I was feeling on the inside to be seen on the outside.
When I was diagnosed with AS, I was actually relieved. At last, the pain had a name. The artist Hayley Heartbreak made me this amazing thing.
But labels alone don’t make disease visible. My friend Pinky Fang is legally blind. Last year she went to get on a bus in Newtown with her Blind Foundation card and the driver laughed in her face. Said she didn’t look blind.
What the fuck does blind look like?
Pinky has five percent vision. This is her self portrait.
I wrote this poem for her.
Sometimes I go downstairs at night
and stand between the window and the mirror on the wall
so I can watch myself from behind
looking out at the darkness
I walk home with my friend and her guide dog
people always ask her stupid questions
“how can you be an artist if you’re blind?”
“what does pink feel like to you?”
she just laughs and tells them to fuck off
“my life is not your story.”
We’re always told to keep looking forwards
for danger, maybe, for hope
but I’m watching our feet
and the dog’s feet, and my cane
to make sure we don’t get tangled up
When I look into the night with one pair of glasses
all I see is my own reflection
with the other
the stars are open eyes over the flat bay
I think she has more imagination than I do
my words are watercolour
and she draws herself
in platinum candy pink.
Identity is work. Identity is created and created and created, and it is fought for because people will try tell you what your identity is and they won’t be right.
When I got sick I lost what I thought was my identity. I could not work. I could not create “feminine.” I could not dress myself. I could not put on makeup. I could not have sex. I could not make a baby.
I became “sick.” That’s who I was.
One day I went into the WINZ office and cried. I cried because they were making it so difficult to access my means to survive, and I had no energy left to fight.
I wrote an article called FUCK WINZ. Word got out, and I became known as the girl who said FUCK WINZ. This is another portrait Hayley did of me then.
Being the girl who said FUCK WINZ was exhausting, too. I ended up back at “sick.”
This poem is called Credendo Vides, which means believing is seeing.
Today I woke up and the world was gone
Across the road the soccer players made monstrous figures in the fog
my left ear is blocked from last night’s shower
You told me to make sure the water was as hot
as I could stand, for the pain
but the pressure got the better of me
You’ve asked me what it’s like a million times
I told you about the paradise duck I see every day on the field
alone, in the exact same spot
Fog is made up of water drops too small to fall as rain
it cannot move on its own
it must be pushed together to gather form
I told you about the paradise duck on the field
I couldn’t see it but I knew it was there
you promised me
you’d go and feed it.
Stephanie de Montalk wrote the book How Does it Hurt?
Steph suffers from chronic pelvic pain and the book is the result of her four year phD. She was the first person I knew who talked honestly about invisible illness and the high risk – the temptation – of suicide. I went to the launch of the book. I walked up to Steph and said “Hello, I’m Sarah. I have Ankylosing Spondylitis” and she pressed her palm to my cheek and I saw, for the first time in anyone’s eyes, understanding.
This picture was made by my friend Jem Yoshioka when she had Chronic Fatigue Syndrome. When she shared this with me, I broke down. I could see everything in it, the rawness, the colours, the desperation, the despair. I knew that in Jem, I had found another person who could understand.
That song, Not a Pretty Girl, it goes on to say
imagine you’re a girl
just trying to finally come clean
knowing full well they’d prefer you
were dirty and smiling
There’s a lot of things that people want out of women, and a lot of things people want out of a woman with disabilities. If they have to hear about pain at all, they want a triumphant narrative. They want a pretty girl and a pretty bow at the end.
I don’t exist to be an inspiration to able people. I’m not inspirational for continuing to live my life in pain. It’s not like I chose it.
What I do choose it is open it up. To make it as naked as possible. To make it unignorable. Then maybe us, all of us who suffer with no visibility and no pretty resolution – we all won’t feel so alone.
Here I am. I’m dirty. And I refuse to smile.
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