This piece was written and performed for the Quippings love show as part of the Emerging Writers Festival at the Malthouse Theatre in Melbourne in June 2017. I also want to add that I feel the medical photography (especially in my experience) is almost never for our benefit, it’s always for someone else’s.
I highly recommend you listening to the audio before reading. Click here or below to listen.
This is a love letter to my body
It’s ok to love my body – even when the doctors looked at me like a specimen.
When I was about six, I started to attend dermatology conferences. Skin doctors from all over the world would look at patients with rare skin conditions.
The doctors pitched these to me as a way to find a cure for my skin condition. Almost thirty years later, there’s no cure. And these conferences (and genetic research) still continue.
It wasn’t a two way participatory conference. The doctors would look at me, discuss me, and I wasn’t able to say anything because they had to diagnose me based on appearance alone.
I’d lay in a cubicle – sometimes with thin wooden walls, other times just with a sheet on a rail – and wait for doctors to come in and observe me. I’d lay under a white hospital issue cotton waffle blanket, wearing nothing but underwear and one sock. I was cold, a specimen, no more than a diagnosis. They didn’t even say my name. I was alive, but I may as well have been a cadaver.
“I’ve never seen a case this rare before.
Nethertons syndrome. Diagnosed with Ichthyosis for, erythroderma at birth.
Was she a collodion baby?
Her eyelids are ectropian.
You’ll see her skin’s abnormality – showing Ichthyosis linearis circumflexa.
This is a rare case.
It is estimated to affect 1 in 200,000 newborns.
A rare case indeed.
A difficult patient.
She wasn’t expected to live past a few months old.”
Sometimes I would charge money for a look – like a medical peepshow. I could never do this as an adult, but childhood cuteness and bravado made me a few dollars.
Outside of the conferences, at regular checkups in the hospital, I would participate in medical photography. We went down to the hospital’s basement and followed a long red line down sharp corridors to a cold photography room. I stood, near naked, shivering, in front of the cameras.
Doctor: “Just stand still for the photo. There’s no need to smile.”
I don’t know where these photos ended up.
It wasn’t until my breasts budded that I knew I didn’t want my body stared at in this way.
Once, a woman, much older than me, came to lunch with my Mum and I after a conference. She too had Ichthyosis. She was on some strong drugs – they took the redness away from her skin, but her internal organs were ruined. Liver failure, I think. Moon faced from steroids. She couldn’t have children while on the drugs.
Was this happiness, I wondered? Was this what it’s like to be normal?
I asked Mum how this woman could be happy when she’s spending all of her life looking for a cure? When the treatment is worse than the condition itself, how can you choose this path?
It was then I realised I didn’t want that for me.
I had longed to meet someone just like me as a kid, so I could feel less alone. But how could she be my role model when she wanted to change the way she looked?
It’s ok to love my body, even when a cure was pitched to me for, an early age.
Alternative therapy pushers:
“There will be a cure in 20 years.
Jesus loves you
Here, drink this powder.
I couldn’t handle looking like you. I’d want a fix for my face.
She’s not cured because you don’t believe in God.
Jesus loves you
We’ll pray for you
Is there a cure for that
I couldn’t handle looking like you.
Have you tried eliminating dairy?
Jesus loves you”
I’d take a cure for the pain, but I wouldn’t take a cure for my appearance. This is who I am and why should I change myself to make other people more comfortable?
It’s ok to love my body, even when I was ashamed.
School bullies and adults:
“Pick up your skin.
Don’t touch anything in my home, you’ll make it greasy.
I won’t sit there after you’ve sat there.
We don’t want you in our photo.
You’ll never have a boyfriend
We don’t look at people like you
You don’t need to buy a red nose for Red Nose Day
Red head match
Your face looks like a Beetroot
You are red because your parents are black and white and they’ve sinned.”
It’s ok to love my body, because the holy grail of disability is not finding someone else who loves you but finding that love for yourself.
When I announced my engagement, and then got married, there were parents of children with my skin condition who told me this is what they wanted for their daughters. For them to find love, to find happiness – in the arms of another. They wanted someone to look beyond their skin. They wanted their kids to be married and give them grandchildren, even though they were still babies themselves. Marriage and children is seen as the pinnacle of normality for disabled people. Anything for the world not to see them as disabled.
These children are only little. These are adult sized plans. What about getting an education? Finding independence? Travelling? Forming friendships? More importantly, what about loving themselves?
I see people with Ichthyosis and other skin conditions asking how they can make themselves look better, cover up, Slough that skin off. Sometimes we forget the importance of looking inwards and finding self acceptance, rather than looking outwards to make others accept us.
It was expected my husband took me on when we fell in love.
“It’s wonderful that he loves you just the way you are.
He looks past your red skin.
He’s a saint for taking you on.
You’re a burden to him.
What are the chances of you passing on your condition to your children?
Does he have your skin condition too?”
But he doesn’t do any of this. He sees me. He tells me I have beautiful on my face. He carries my skin in his pockets so I’m with him at all times. And he loves my body even more than anyone ever expected another person could.
Finding love with another – and marriage – isn’t my greatest achievement. Loving my body despite all this shame is.
This was a love letter to my body.
Writing and voice by Carly Findlay
Audio production by Jason-Scott Watkins
Photo by Genevieve Bailey
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