Image: ‘Mildiou’, Flickr (CC BY 2.0)
EB is an artist. A rare artist of the skin.
She came to me quietly while I was eyeless in the spring of 1983. Silently copying herself in an autosomal dominant pattern, like a destructive stowaway on a magnificent ship. This was the only time she knew how to be silent. She made me a cotton wool baby. She had plans for my perfect form from the day of my birth. My mother, Ouyen born and bred, was a stranger to EB. She first saw her art when I was a toddler. She questioned my foreign father and sent letters to Scotland asking about the condition. My father said very little. The letters were returned to sender and then my father left.
I was seven years old, in my weatherboard slapped together home, the home my grandfather built out of oddments for his single daughter with two kids. I wasn’t aware of the mud-stained weatherboards with rusting nails. I wasn’t aware of EB, until an unrelenting Mallee summer’s day. The flies were stuck to the back door flyscreen, searching in small fits for a tear in the mesh. There was not even a tiny flutter of a breeze. I had opened the back door and stepped out onto the bare cement step on my back porch, holding a duck mug that mum bought from the odds and ends store, the one that every family in Ouyen had. Ouyen, a doctorless town stuck in a timewarp, a speck in the Mallee landscape. I smiled into the stifling heat and took a large slurp of my cordial.
EB was an artist with an aesthetic name. Epidermolysis bullosa simplex. She was not the sort of artist that would sit for hours delicately stroking her canvas with a tiny wooden brush. No, EB was loud. She painted her canvas with a paint gun, in spatters until the canvas would split, signing her name underneath every piece.
EB was loud. She painted her canvas with a paint gun, in spatters until the canvas would split.
Summer was EB’s favourite time of year. She needed friction to help create her finest work. I looked out over my sizeable backyard. There was no grass in sight or flowers, save for a few drooping pigface succulents. I glanced back at my mug. The duck image was slipping down through my hand from my sweat. I realised that even my school dress was sticking to my skin.
As I stepped back inside the house, I noticed that my right foot was stinging. I sat down and put the duck mug aside. I pulled off my black leather lace up and peeled away my sock. As I peeled, my sock stuck to a burning, bulging area of my foot. The sock would not shift.
I called out to my mother, who hurried down from the other end of the house.
‘What’s wrong?’
I looked up at her and gestured towards my foot. Her face shifted as her eyes fixed on my sock.
‘Oh’ she said, ‘that’s monstrous.’
She tried to return her eyes to a look of calm, but I had already witnessed her horror at the great bulging blisters hanging off the edge of my sock-stuck foot. She ran me a bath and slowly eased the soaked fabric free.
‘You will have to wear thongs to school today,’ she said.
As she left the bathroom, I saw her face sink. EB enjoyed this. She always ensured that her work was on blatant display. She enjoyed the reactions. I did not.
The school was nothing more than a slight of the scrub that surrounded it. Its archaic brick facade greeted the fifty or so Mallee offspring each morning. Unlike the bedraggled eucalyptus grossa that covered the burnt Ouyen sand, or the stark salt bushes that marked the barren summer landscape, the children of St Joseph’s Primary were bright with starched uniforms. What I noticed about them was their skin. Some flecked with freckles, some tanned and unblemished, some exhibiting the odd scrape with a pretty plaster. Their integumentary systems perfectly…intact. But none like mine. None that EB had taken as her playground. None with sweating thongs exposing her creations, clear fluid slowly seeping out of fleshy sacs. This time she had dabbled in colour, tinging the other side a pinkish red for effect. I entered the school grounds limping, dumped my blue bag down in its usual spot. Adam saw first.
EB always ensured that her work was on blatant display. She enjoyed the reactions. I did not.
‘Wow’ he said through a mouthful of coloured bands.
‘What happened to your foot?’
‘EB’ I replied nonchalantly.
I felt his stare.
‘Oh, well maybe you should cover it,’ he said, looking queasy.
I didn’t reply. I knew that EB was basking in the gasps and stares I received from showcasing her masterpieces. Later that day my mother came to pick me up.
‘I have some good news for you Stefanie,’ she said.
‘What is it?’ I asked, irritated from the heat and the throbbing pain that had begun in my blistered foot.
‘There’s a new doctor in town. I have made you an appointment with him. I want to see if he knows anything about EB’.
I forced a smile.
*
I remember being nervous about meeting the new doctor. I couldn’t recall the last time I had actually seen a doctor. Ouyen had not had its own doctor in years, save for the odd medical student bound by the academic requirements of rural placement. Ouyen people were the same as the sheep and wheat they farmed. Hardy and durable. If anyone in the town had an ailment, they made an appointment with the health nurse at the Mallee Clinic, or accepted it as part of life, as normal as drought.
The drought was over when Dr Ron Pattinson arrived. He was a tall man with an ancient beard and glasses. My appointment time had arrived and I walked into Ron’s doctor surgery with my mother. A sterile scent mixed with moth balls and dust hung in the air. I scanned the room, it was full. Heads buried in papers and dog-eared magazines. Sounds of freshly licked fingers flicking over pages could be heard, accompanied by an odd cough from an elderly gentleman slumped over a walking frame.
Ouyen people were the same as the sheep and wheat they farmed. Hardy and durable.
‘Stefanie.’ My name was called out.
Dr Ron greeted us softly and welcomed us into his office. I sat next to my mother on one of two black chairs.
‘Well, this is my daughter,’ she explained in her thick Ouyen twang, ‘and I don’t know if you have ever heard of EB cotton wool babies, but anyway she has it, and I don’t have any experience with it.’
Dr Ron nodded as she explained. I looked down at the art on my foot. EB had been busy firing her paint gun onto her unfinished piece. The blistering had grown larger in size and was now full of clear fluid on one, a deep scarlet on the other side. Dr Ron got up from his chair, and walked over to me. He peered inquisitively through his glasses down at my foot.
‘Oh my, that isn’t pleasant is it?’ he said to me as he pressed one of the sacs.
‘No, it’s not,’ I said, flinching.
‘Well,’ he said, moving his hand away.
‘I don’t know that much about EB, but I will make a few calls. Now,’ he said warmly, ‘I will need to clean and dress this.’
The following week Dr Ron arranged to regularly treat me and document EB. Although he could not stop her from creating her art permanently, he did quieten her, covering her displays with special dressings that healed without scarring. I didn’t notice her art anymore and the gasps and stares faded away.
But in 2009, EB staged a comeback, silently copying herself in an autosomal dominant pattern to my second-born son. I knew there was a 50 percent chance that she could do this, but when it happened, it hurt me. It hurt to see her paint on him. The blistering. The tearing. The scarring of my perfect little boy’s skin. The stinging in the shower. I would stand with him, counting to ten until the stinging stopped. As he got older, I told him how I thought of EB when I was young, as an artist of the skin. Fortunately, I received support from the DEBRA Foundation, who supplied special EB dressings for my son very early on, so he never experienced the gasps and stares that I did as a child.
I think of Dr Ron often, and how he covered her displays with special dressings, and eased my pain. He allowed me to be a carefree child of Ouyen once more. Through the dust and the heat, he dedicated his life to us, the people of the Mallee.
