The dance

Hun·ting·ton's disease | noun

A hereditary brain disorder that is a progressive, neurodegenerative condition marked especially by impairments in thinking and reasoning, disturbances of emotion and behavior, and the involuntary spasmodic movements that are associated with the loss or atrophy of nerve cells in the basal ganglia.

Once, she vaguely remembers, she lived at home. The boy who lived in the house down the road wore thick-lensed spectacles, which made him look permanently wide-eyed with surprise.

Diane used to cycle past his place most afternoons around twilight, giving two conspiratorial rings as she went by.

Oh, how Diane loved to cycle, hair pushed back from that big, lovely face of hers, all a-shine with sunscreen, lips stretched wide so that she could taste the wind.

Those who passed Diane on those sunset rides down to the river, with its nervous swamp hens and wayward dogs, knew nothing of this. All they saw was a large, pretty woman on a bicycle, who somehow reminded them of – what? A warrior princess? A porn star? A child?

For this 30-something woman with the dimpled thighs had about her a fey, brave air; an intangible something borne of a mother who, at 65 years old, still professed a belief in Santa Claus and a father who wrote poems fit to break your heart.

Usually when Diane cycled past his house, the boy was on his bike in the front yard and gave her two rings back. If, instead, he was simply hanging about, mitigating after-school boredom by pulling leaves off his mother’s bay tree, waltzing in the dust with the ginger tom or picking at scabs, he’d wave and shout out Ring! Ring! And Diane would laugh and wave and shout back Ring! Ring!.

These days it takes Diane three minutes just to get a cigarette out of the packet, and even longer to light it. If she drops the bloody thing, she struggles to get it back into her mouth because of the spasms, so the fucker inevitably goes out and she has to begin the whole ritual all over again.

All over again.

On Saturday morning before his wife’s weekly visit home, Colin asks an old school mate who works at the local chemist shop for something to calm his nerves. Dave gives him the eyeball and says What you need is a good root mate.

Colin nods and smiles as a wave of deep sadness hits him. Once outside, he has to stop for a moment, leaning against the glass window with its display of CPAP machines and vitamins. He is remembering the feel of Diane against him. The hair on his wife’s soft, warm belly. Her tongue on his neck. The smell of coffee on her breath.

Colin dare not ask Diane how she gets pleasure these days as she twitches and screws up her face, flinching in the wheelchair as she mimes wildly the messages despatched to her mouth by a decaying brain.

He goes down the Back Beach and watches with envy as a small sailing ship, its sails unfurled against the wind, makes its way across the grey horizon, dissecting ocean and sky. Then he shouts swear words into the waves and has a quick wank back at the car, screwing up the tissue with a grim smile.

The nursing home is less than five minutes’ drive from the house they once shared and the staff bring Diane over every Saturday afternoon for a visit.

Gary, their tall, shy 17 year old who wears the perennial bloom of embarrassment on his cheeks, although not because of his mother, is all dressed up and smiling at the front door when the nurse wheels Diane in.

Hi mumma, Gary says softly, and Colin watches as the boy bends to kiss Diane’s cool hair.

You’d feel such pity if you could see them sitting there around the kitchen table, trying so hard to communicate; to be a happy family again. Every week it gets harder for Colin and Gary to make out Diane’s words, so they lean towards her, trying desperately to hear. They want so much for her to feel that everything’s normal; that, for one afternoon a week, she’s one of them. Even so, the conversation is littered with frustrated you-whats; apologetic sorrys.

This Saturday, a front button is missing from Diane’s cotton frock and Colin can see her peach lace bra peeping through the little gap. Diane’s legs, rarely still except in sleep, jump to the same discordant tune which sends her hands off into frenzied overtures of gesticulation. Sometimes, it looks as if she’s kickstarting a motorbike. No wonder she ends each day in exhaustion. By the time the nurse picks her up at four, Diane chest will be sodden with saliva. Sometimes there will be shit.

Diane reaches one shaking hand across the table to Gary and tells him he mustn’t go and work in the city. He is her only child, she says, and she needs him nearby. Colin wants Gary to go but stays silent. He knows their gentle son better than that.

One Sunday, Colin and Gary took the two-hour train ride to Perth and spent a whole day walking its malls and arcades, eating ice cream and looking at woman and families. In the food hall of a large department store, they bought silly things you couldn’t get in the country – rosehip teabags, halva bars, a pomegranate. They have never told Diane this.

As always happens after a week without her, Colin watches his wife and feels a familiar sense of loss. There is anger, too – a growing heat which threatens to spread and poison him from within, like pus from an abscess infecting his blood. Only with effort can he keep himself from blaming. Her. Himself. Anyfuckingone.

Colin knew it would happen, you see. Diane told him early on that she carried Huntingtons Disease. Worse, they knew there was a 50 percent chance a child of theirs – hers – would develop the disease, and they went ahead with the baby anyway.

So now they sit around the table with its vinyl tablecloth and tarnished cruets, because Diane isn’t there to polish them anymore, and Colin tries not to think about what might have been.

Nowadays you could take a gene test, but he’s not sorry his son seems as yet disinclined. Once diagnosed it could become difficult for the lad to get health cover; even harder to find life insurance, and Colin has even heard stories of prospective employers changing their minds at the last minute.

No. Better to not know and hang onto hope. At least not knowing, their son can play the what-if game. What if I don’t end up rooted in the head like mum. What if I can still walk at 30 and am still alive at 40. It’s not a game they enjoy. But it’s better than the alternative.

Today, while they’re all sitting there trying so hard to act normally, Diane will say she misses the quiet intimacy of the three of them living together, and her husband and son will share a look.

For Diane has become selfish and is mostly preoccupied with the things that engage her at the nursing home. She has a busy life designed to meet her needs for as long as she has them. She can’t play ten pin bowling anymore, but the nursing home staff get her to keep the score instead. Then there are coffee mornings with old colleagues and friends, who bring chocolates and other ingestible salves to her many, many wounds.

In short, there is less space in her life for her husband and son these days. Except, of course, on Saturday mornings when, for a few short hours, she ignores the truth in their eyes and yearns for what once was.

It was Diane’s physical self that deteriorated initially, leaving the mental her to watch on in growing dismay as she stopped cycling, gave up work, lost touch with her ring-ring boyfriend down the road.

But two years into the disease and she has stopped minding the way she looks. She doesn’t even mind the reaction from folk who haven’t seen her for a while. They try to hide the shock, but she sees it.

Occasionally, frustration at what the disease has done to them all, but mostly to her son, with his big adam’s apple and man’s hands, makes Diane lose her usual good naturedness and she flares, in her anger storming handles off china cups and holes in sheets. She is still, despite it all, a strong woman.

She realises that she is slipping in and out of who she was, although possibly not quite as fast as they all seem to think. Colin can see this in her eyes sometimes – how the clouds lift and that innate intelligence shines through for a moment when one of them makes a joke. Her old, fearless, Red Sonja glint.

But not, it must be said, so very often these days.

They gave away sex soon after Diane stopped walking, any intimacy it offered tempered beyond endurance by all that shaking of less-than-youthful flesh, the sharp collision of teeth.

Instead they clung together, tight enough to stop the flow of blood to arms which hugged chests, and to legs which entwined in growing desperation. But Diane found it hard to sleep, and until she did, her endless jerking kept Colin awake. When Diane suggested they get separate beds, she was taken by surprise at the sad relief she saw in her husband’s eyes.

Oh, to love as hard as those two and to lose it all anyway. Their story has the kind of hopeless poignancy Diane’s mother, who died the day before her daughter stopped walking forever and who blamed herself because, well, that’s what mothers do, would have relished.

Diane’s father, who spends long days crying whisky tears at the thought of his once beautiful daughter, fills the void left him by writing long, convoluted odes to God’s injustice.

They’ve all been told. They know that within the next two years any semblance of the Diane they once knew, even the Diane they know now, will have gone.

It will, in fact, take much less time than that. But for now it’s gone midnight on the day after Diane’s last visit home and Colin is returning from late shift at the refinery.

It is his favourite time of day. There is peace and hope within the embalming comfort of sleep, and he relishes knowing that those he loves are, for now, without pain.

The dead cat lies in the middle of the road and, because Colin can’t bear the thought of cars mashing its poor body into a porridge of blood and fur, he parks outside the deli and walks to where the cat lies, touching one of its open eyes to reassure himself it is, in fact, dead. Then he grasps the flesh of its back in two places and, gingerly, lifts.

The animal is surprisingly heavy. It sways like a water bag and Colin prays nothing will give way – eyes or shit or bits of stomach. He walks to the verge and gently lays the dead cat there, on the grass. Its head lolls back as he lets go and he notices the wetness of tongue, the pinkness of gums, the rubber blackness of lips.

Colin wipes his hands on the cool grass and walks back to the car, the residue of the day’s warmth rising up from the bitumen to greet him.

Something to do with the cat has prompted a memory and this will lead him to an act of uncharacteristic spontaneity. Back at the house, after a shower and a quick bite to eat, he will go to Diane’s nursing home, disturb the night staff, apologise profusely and ask to see his wife as she lies sleeping.

He has remembered, amidst the dull ache of yesterdays wasted and tomorrows to be spent in regret.

He has remembered how Diane sleeps more beautifully than anyone he has ever known.