rejection of my mother seeped into a rejection of me too. My soul withered. Life held no laughter for me. It was lonely and stark. There wasn’t even a routine to take energy from. I existed, waiting for someone to notice I stank. Waiting for someone to notice I was hungry, thirsty, hot, cold, mosquito bitten, wasp stung.
We live on a cattle station, Styx River Cattle Station, fronting a heap of beaches and beside the Great Basalt Wall. The Styx River runs around behind our homestead and, from my favourite verandah, I can watch it roll in and out every day, twice usually. It is never apologetic in its appearance.
The name of our cattle property meant something once, said something to everyone around here. Now I suppose it still does say something—whatever the tourist brochures tell it to. In my mind, I usually just call it The Styx.
It’s pretty quiet out here a lot of the time; and since my mother left, there’s not a lot of joy. But there is always plenty of laughter to be heard around the place when outsiders are involved. “Going outback,” they say—must be some conceptualistic coastal outback, hey. For a taste of life on a cattle station, they think—well, they mostly all definitely make it to the cattle yards. My father sheds limitless laughter in greeting tourists. You’d probably like him. Most people do. Most people appreciate the social ease he generously, freely, gives. I often recognise the relief people feel at social gatherings, in the easy and safe social harbour he offers. He is often kind, thoughtful, to them. A few short moments of time can add a great deal to a person’s perception. Hail fellow well met, that’s my father. Back then in the early days, they lapped it all up and he glowed in their light. When guests—paying guests—came to stay on the property, some evenings he would introduce the bar hangers-on to revolting parlour games, such as swinging potatoes in a stocking, simulating baggy balls, playing verandah bowls.
I’m just picking one random night now, in about 1993 when I was sixish, sevenish. The moon shone an almond sliver onto my face. They had forgotten to close the curtains again and the window was open in case a breeze shuffled in. My nappy was pretty much at capacity, but it was on the way to summer, so if anything, the wetness offered relief from the remains of the day’s heat. My cot bed had embedded scum on the getting-out side—some remains of vomit, no longer smelling too much, stains of chloral hydrate, and saliva, lots of saliva.
This night the rail was up and the putting-Sophie-to-bed job had been done. It was silent in my bedroom if I didn’t rattle the rail, and I could hear shrieks of laughter—some casually raucous, others salacious—from the bar, twenty metres from my bedroom window.
“Okay, June, show us what you can do with your balls,” I heard my father say. Shrieks of laughter drowned him out for a while.
“I love a woman with balls,” another wit joined in.
“Come on, Sid, your turn, grow another set,” June called out.
I think there are sound grooves in the bar walls of this exchange. Every time, with each new group of tourists, he acts like it’s the first time for such fun. Almost equally as ridiculous, every time, with every new group of them, they seem to actually believe that it is funny. From every tourist bus—easily one every week—he has them ball-bowling in the bar well into the night while I lie alone, scared: scared of being alone, scared of not.
In so many other ways these early years were silent ones, for me. Not that I couldn’t hear, just that I had no voice. My disability gave me a part-time brain, with no-way communication. I couldn’t meaningfully speak. I could shriek and scream with frustration, pain and fear, but had no ability to form coherent words. I looked basically normal, albeit very thin and frail, but I could not toilet myself or feed myself, couldn’t even effectively scratch myself. I had little ability to walk. Sometimes I could totter a few steps, then randomly fall one way or another. I couldn’t use my hands in any purposeful way. I could flail my arms wildly around, grab and never let go, but could not hold a cup. Or even a hand.
Rememory 2
Everyone seems to think the worst of disabled people. If they don’t get normal feedback, they think you’re dumb. Mentally, I can process information fast—far faster than other kids, I reckon. And I can read minds. Faces tell me what people are thinking. Faces jump from their skin and bones and shout every tiny emotion at me.
“How are you today, darling?” The voice is usually jaunty, but the eyes are always dead. The smile is dead.
“Have you been a good girl?” A self-conscious laugh, sometimes a pat of my head, and they feel satisfied: they take pleasure in their kindness.
“Thank God that part is done,” they think.
“How totally revolting, ugghhh,” the slight pursing and micro twitch of the lips says.
Then the dead smile swings to someone else and a light switches on. Their eyes dance in the relief of someone normal. At least I increase the joy they feel with each other’s company.
I can read it all. The most miniscule flicker of malice, contempt, lust, love is written in bold capitals across their faces. These things scream at me, and sometimes make me scream. Inside.
It’s called Rett Syndrome, my syndrome. Back then, when I was little, some people considered it the most extreme form of autism. It’s got to be one of the worst disabilities to have. It makes Asperger’s or even the most dysfunctional alphabet disorder seem mild in comparison. Rett is severely physically debilitating and painful. If you’re lucky it leads to death, usually suffocation during a bout of pneumonia; but if you’re unlucky, you live on and on and on and on. Interminable days of suffering. Interminable days of neglect, boredom, frustration, despair.
Some people get lucky and get drugged. If you scream and flail enough, you can get them to drug you; usually to shut you up, sometimes to put you out of your misery. Rett Syndrome means mental and physical torture for everyone involved. And it grows. Regresses you further and further, every moment, every day, every year until your teens. Then it stops, slows at least. Sometimes reverses. A bit. If you live long enough. Boys with Rett are lucky. They never get born.
Rememory 3
“What a good man looking after that poor little creature,” they all say. “He is so unselfish, doesn’t put her in a home. He’s devoted to her.”
My father loved this idea of himself. He’d cultivated it for so long that I think he actually believed it. It had grown onto his skin, only flaking off in the privacy of his own home. Just for me.
My mother became a burden. At first it was okay, more than okay. It was only shortly before the cachet of mixed-marriage days. He was the centre of everyone’s gossip, and he glowed. In those early days, she was who he thought she should be. Grateful, he thought she should be, and I think he believed she was. At the start.
It was good then, up until she left, up until I was five and a half. She made pancakes for breakfast every Sunday. And I had a birthday party every year; so did he. Even though I didn’t have any friends, she’d find some. She made it such an occasion to dress up—she always made me a new dress—and bring presents and have fun, around me, in the name of me. She’d make a special cake and he’d help me blow out the candles. And she’d take photos—some of him and me, mostly just of me. This happened every year she was here. But then, when she strayed from his agenda and developed ideas and wants and loves, he really had no option but to lose her. And she would have to suffer because of it. Never to benefit from her life with him, he told her. And showed her.
Rememory
