my mother left Styx River Station, my father didn’t really need anyone. He liked being the token single father, someone all the mothers fêted and simpered at. He liked making a show at school events of being the devoted father.
I can see him now, pushing me up the path to school from the car park. He, the picture of an RM Williams rural bloke. Me, skinny, legs and arms undersized and always askew, pushed in an undersized pastel-pink wheelchair that, from its very nature, could never be cute.
He always had something slightly skew-whiff to match me: rumpled hair, shirt-tail hanging out, sleeves rolled too high, uneven. Something for everyone to latch onto to pity, to offset the endless well of pity they couldn’t allow themselves to properly begin to negotiate towards me. It could almost comfortably be displaced onto him. He would only have to turn up three or four times a year at most, to attract the tag of devoted father.
It wasn’t a big deal for him to no longer have my mother around. He always liked going to social functions alone or with a wingman or two. He attracted more attention that way. For him, the chase for attention was sublime. He walked differently, dressed differently, stood taller. And smelt of going out.
Rememory 5
My father always had so much to do, he said. Dozing with a book in a squatter’s chair was research, he’d say. Reading Country Life magazine was keeping abreast of things. Apart from going to sales and conferences, in the early days, he didn’t seem to do much in the cattle side of things—plenty of staff to do that—but he always had some project in the offing, some scheme to roll out, some way to big-note himself—mostly to himself. And to his cronies.
He has—had—three main cronies: Silas, Dominic and Warren. Creepy crony number one, Psycho Silas, is ace wingman and the master manipulator, with money to invest from his very lucrative psychiatric practice in Leichhardt, a town with the highest mental health problems per capita in the country. His greatest joy is in seeing the impact of his manipulations—usually to the detriment of others involved, and not always for his own personal gain. The pain of others is sufficient joy for him. His patients, especially those underage or in government care facilities, are frequent targets, often involving inappropriate sexual behaviours—sometimes on his part, but by no means necessarily.
Crony number two, Dodgy Dom, is a bit of a wingman too, a small-town lawyer, a minor investor with major free legal advice who, at nineteen and still at uni, married the wrong woman for the wrong, but then socially pragmatic, reasons. He is tall, not bad looking in a rugby union way, with a resulting mutual magnetism towards women—pretty well any women—which generally turns to petulance on his part if they don’t continue to show sufficient interest in him; and contempt when they do.
The third crony, generally an afterthought and only included when they need him, is Warren, the fixer. Rabbit Warren is on the bottom of the pecking order and crony social hierarchy, and definitely not an investor in terms of cash. He used to manage his parents’ gift shop, but when that went broke, he has worked on and off at Styx River, calling himself head stockman, manager, overseer—whichever title takes his fancy at the time. The highlight of his life always involves something dodgy, more often than not borderline illegal, and in many cases straight out illegal. When it suits, especially when travelling overseas, thus limiting the chance of being sprung, he’ll claim to be a police officer—always a sergeant; significant that it’s never inspector. These days he’s a communications officer for the police. Still not a real policeman.
The four cronies have always been a tight group. Even when one of them drinks too much and abuses one or the other of them, the rift is only ever temporary. They always have a plan to hatch, and I think they love the togetherness of hatching plans, probably more than the plan itself.
You’d think this sort of stuff would wash over me. Especially when I was five, and even when I was ten. But not much happened to me, ever, and while my syndrome limited me physically, my mental faculties were intensified, so anything, everything was noticed. And noted for future rememories.
Rememory 6
Rett Syndrome does lots of bad things to me, inside me. Some days are bad, often the days are bad. Some days the pain in my head, in my bones, in my everywhere, comes on and I scream. And scream till blood comes into my throat.
In the early days, my mother gave me medicine—red mercy medicine—but it took a while to work. I screamed in her face, my hands wrapped in her hair, wrapped in mine, twined, twisted in crazy-girl fists grabbing, dragging, ripping the pain away—hers and mine—my face in her face, noses smashed together, me screaming in her face, she screaming inside, weeping outside, her tears washing the red medicine stains from my chin down my neck, soaking our clothes. Until the pain stilled. Fist nests of black and gold hair stilled. Then I’d sleep. But she wouldn’t.
After she left, the hair was only gold.
Rememory 7
They call us the halo children. For some cruel parody of life, we have a sort of ethereal beauty. You can see the veins under our skin even though it feels all smooth. We’re like that while we’re young—before puberty—even though most of us don’t live that long. But if we do, when our hormones go ultra-haywire, we mostly seem to grow fat and ugly. Because of neglect, I reckon. Disabled kids rarely get braces. No one worries too much about diet and exercise for us. We don’t get bought Proactiv face wash, or cute little eyeshadow packs for Christmas. We don’t get put on hormones for our skin. We don’t have boys chasing us. Well actually sometimes we do, but only the real warpos, not in the will-you-go-out-with me way.
I didn’t get fat. After my mother left, I didn’t get enough food to get fat. If I had usable arms I could have raided the freezer for out-of-date frozen fish fingers or frozen peas. But I’d need usable legs too. If I had hands that could hold things, I could have fed myself. If I had a voice, I could have demanded food. But my hunger was no one’s main priority. Of course I got fed, but I couldn’t eat quickly. Everyone thinks eating slowly equates to not being hungry. So I suppose I stayed in the ethereal stage, a bit shrivelled ethereal.
At home, I was trapped in a second-rate wheelchair—when I was lucky. Other times I was left in my cot soaking in excrement with stale urine blistering my skin. Shame I was blessed with exceptional olfactory senses. This is the life many of us lead, hidden from outside scrutiny. Even more so for me, hidden in out-in-the-sticks-Australia, a place of romantic wonder under the golden sun.
Rememory 8
The stormbirds endlessly plead for the day to begin. It’s still and quiet. This is the time of day when I am most aware of being alone. I’m most scared at this time of the day. The stormbirds scream my fear, my silence.
No one else is awake and I’m hungry and wet and stinkin’. Believe me, no one’s in a hurry to wake up and face that. Everyone’s sick of having to change my stinkin’ nappies. Mum never worried, but. Every morning, she always jumped up and said, “Hey, Soph, let’s sort this stinkin’ nappy.” I love the word stinkin’.
Everyone’s sick of having to spoon-feed and clean up after me too. You can see it in their eyes. Hovering on the edge of the horror of imagining what it’s like to be me. Even good people hover on that edge of horror—good, bad, everyone hovers—no one really goes there. They may glimpse, but never visit waking up inside a dead person’s body, trying to move limbs you’re not really connected to, beating on the smeared Perspex willing someone to let you out. No one does. No one finds you. No one is looking.
Hours
