Writing Place 2021

By Donna Eerden  

1986 was a big year for me and my sister. For a start it was the year my sister got married. It was spring and Mum was making her wedding dress. Mum cut out the pattern on old sheets before she started to make it up. The wedding dress was to be made of soft white satin, and I watched mum’s every move. I was twelve years old, going on thirteen, and I was going to be the flower girl.

The doctors told mum I’d have to be in a wheelchair on the day and Mum had said ‘No’. Mum and I used to agree about everything when I was a kid, so I said ‘No’ too.

I was determined to walk down the aisle behind my sister in my pinky-purple flower girl dress, holding my basket of flowers, and I was determined to walk unaided.

I knew I would have to banish any negative thoughts and that I would have to call upon unicorn magic. I always called upon unicorn magic when I was a kid because I have a rare medical condition called Sjogren Larsson Syndrome named after the two Swedish doctors who first diagnosed it. There are only four people in Australia who have it, which makes me very rare. It is more common in Sweden and to inherit it both your parents have to be carriers. Although I don’t have Swedish ancestry my parents and grandparents were Dutch, so who knows where it came from.

People like me have dry skin from head to toe. Our skin cells reproduce three times faster than other people’s, and our sweat glands aren’t developed, so it is very hard keep cool in hot weather. I overheat easily and I need cool baths frequently.

When it’s not hot I need an oily bath twice a week in special skin oil from the hospital. The syndrome also affects my legs, arms and eyes and I have trouble walking. I didn’t walk till I was three and the little block trolley I used to push around had to have bumper bars attached, because I banged into everything. I didn’t have a lot of control.

I had to have numerous leg operations when I was growing up and in 1986, the year I was twelve, my legs were put in plaster to be kept straight, and the plaster had to be changed every two weeks to see how they were going. The physios at the children’s hospital used the opportunity to put me into the bath, because my skin would be building up and turning a weird yellow. The bath was deep and warm, and my skin would fall off and float like long strips of ugly leather in the oily water. This went on for eight weeks, and when they finally took the plaster off, my legs wouldn’t bend at all. That was the day I had to have a biopsy with mum and dad present, and the day dad fainted. After that mum banned him from all appointments.

That was also the day the doctor told my parents I’d be in a wheelchair for the rest of my life and Mum had said ‘No’!

Like I said, I could talk to Mum about everything back then.

But when the bad stuff happened I couldn’t talk to anyone. I wanted so much to talk to my Mum like I always had, but suddenly I couldn’t.

Why didn’t I tell her?

Well firstly I couldn’t because I was afraid. Secondly I was sworn to secrecy.

And thirdly I felt like my magic had suddenly deserted me and I’d never find it again.

Looking back, if I’d just said something, I know Mum would have taken me out of the situation. She would have spoken to him and it would have stopped. I know it would have stopped. But I never said a word about Drackylocks for all those years, and I still don’t know why.

Drackylocks was a horrible person I met in my last year at primary school. He was tall and skinny and ate like a horse but never put on weight. I hated that about him, and I hated that he had so much power over me. I hated not feeling like I had any control over what he did to me, and I hated that it went on for so long.

The bad stuff happened from when I met him right though to my second to last year at high school.

The suddenly it was 1992. I was nineteen and I don’t know what it was that made me feel stronger. Maybe it was the six weeks of professional dancing lessons with good looking Lorenzo who was a ballroom dancer. Maybe it was all the laughing as I tried to learn the waltz, the rhumba and the cha-cha for the school debutante ball. None of them was easy, but the waltz was hardest because it was so slow.

Or maybe it was the dress Mum had made me. In her usual way she had cut out the pattern on old sheets before she started, and like my sister’s wedding dress my debutante dress was soft and white, with puffed sleeves, a tight waist and a flowing floor length skirt. Mum had embroidered little pink roses all along the hem, and I loved it.

It was a magic night. Mum and Dad took me to the ball, and watched as Lorenzo walked me to the stage where we performed our three short dances. I thought we went pretty well and Lorenzo agreed. We were both smiling happily in the photo that was taken.

Then I saw Drackylocks.

He was standing with a girl I didn’t know. She looked happy, but I pitied her. And in that moment I knew the unicorn magic had returned. I was no longer the sad person I’d been all those years, instead, I was feeling a kind of rebellious anger surging through me. I’d never felt anything like it before or since, it was electric, and I knew that Drackylocks would never have any power over me again.

I turned away, walked off and didn’t look back.

Magic and mythical animals have always appealed to me. As a child when I’d read books about people or animals with magic powers I’d actually be there with them in the story. It felt odd to be here one minute and in a book the next, wanting to stay for ever so I never had to come back to the real world.

Maybe that’s why I want to be a writer. It’s that same feeling of getting lost in a story, usually someone else’s and staying there for as long as I can. Mum says she doesn’t know where I get my imagination from. I tell her haha it comes from ‘The Deep’….. ‘The Deep Within’, and she laughs at me.

But seriously, writing is what I want to do, because it opens doors to different worlds and strange dimensions where anything can happen and where everything is possible.

After all, only a pure soul can see a unicorn. 

About Donna Eerden

Donna Eerden is a proud disabled woman and a keen writer of short stories and poetry. Her poetic work was most recently featured in Floods of Fire, a collaboration between the Adelaide Symphony Orchestra, Nexus Art Orchestra and Tutti Arts’ Quirkestra where Donna was invited to write work for composers Adam Page, Hilary Kleinig and Julian Ferraretto to respond to. Donna has participated in Tutti’s Creative Writing program since 2019, working with renowned slam poet Caroline Reid and playwright, Pat Rix. Through her writing Donna strives to be a voice for disabled people in literature and the arts.

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