Tag Archives: MS

The writer, stripped bare.

Write what you know, they say—and I know night.

Jet black, dark of the moon night. Crisp shadows on bright, silvered lawn night. Still night of hush and mopoke hoot. Howling night of seethe and crash.

Doona-burrowing, extra blanket, bed-beanie night. Night of sweat and swelter, sheet-tangle, turn and tumble.

On a steamy summer night, 4.12 gleams greenly at the bedside. Blackbird song, else silent. Then a creaking, then a tearing, a ripping, a shearing, a shredding … the crackling subsides, then silence again. Re-enter the blackbird. Later I awake and step outside to rolls of pink bark and new, smooth, fragrant, pale trunk exposed. A gum, stripped bare.

I started writing my memoir nineteen years ago—unknowingly. In a cosy sharing of Quaama women writers, I jotted down vignettes. Longhand pieces, dislodged from memory’s dim corners to briefly breathe fresh air, then closed tight again in notebooks. Fifteen years on, I wrestled with a novel but the memories, old and new, kept breaking through. Refocus.

Two years of filling the gaps, explaining, considering, blaming, absolving, reckoning. Pain, fear, confusion, exposure, realisation, understanding. Relief.

The writer, stripped bare.

Long Road to Dry River will be launched by Jack Miller at Well Thumbed Books in Cobargo at 10.30 am on Saturday 7 March. Then I’ll be in conversation with publishing industry icon Mary Cunnane, there’ll be a couple of readings, then we’ll hoe into one of WTB’s renowned morning teas. If you’re around these parts, it would be wonderful to see you there.

In the line of fire

1.30 am, New Year’s Eve. The FiresNearMe text: Put your plan into action. I hear a vehicle down on the road, coming in from the forest. Then another. Soon, a constant stream.

2 am. We’re backing down the driveway, in two cars. I have the dogs, food for them, water, my walker, and the Mechanic has my scooter, our documents bag and the go-bag, which has been sitting in a corner for weeks.

Down at the Quaama fire shed an RFS guy stops us.
Do you know anyone out at Verona? he says.
Plenty, why?
Lots of homes are threatened. We can’t get out there, not enough of us.
Later, too late, I wondered if he wanted us to ring and warn them.

Continue reading In the line of fire

Denial

Someone from the National Disability Insurance Scheme rang a couple of months ago. ‘Good news!’ she said. ‘Funding for your wheelchair has been approved!’

Well, great. Please forgive me for my mixed response to this news.

There are days when I notice myself casting envious looks at people in wheelchairs. Pushing my wheelie walker around is tiring and difficult, and now and again, especially on uneven ground, I’m at risk of toppling over. Imagine being able to sit down all day… and the chair will have a little detachable motor too, for ramps, or for long distances, or for whenever.

So I had the go-ahead. But still, I procrastinated. This development signaled further deterioration in my condition and I didn’t want to go there.

After a few weeks my occupational therapist (OT) emailed, asking why I hadn’t visited the wheelchair shop yet.

‘Please just let me be in denial a little longer,’ I said.

‘Of course,’ she replied. ‘I understand that the first wheelchair can be difficult.’

First wheelchair?!

Continue reading Denial

It’s official—our health business model is sick

I love Radio National in the summer. They give their regular presenters a break and play reruns of the most popular shows and segments of the year. A kind of annual ‘RN Greatest Hits’. So last Saturday we heard on Ockham’s Razor—home of snappy, topical, sciencey talks—an account by cancer researcher Dr Fiona Simpson of the University of Queensland, of the uncertainty of securing funding for even the most promising of research projects.

There’s a drug, an antibody, given to people with head and neck cancers. It’s called Cetuximab. Of patients treated, 15% respond; the rest just get side-effects but no benefit. It costs the government $60,000 to treat each patient—whether they respond or not.

Dr Simpson’s quest was to find a way to predict who will respond and who won’t, potentially saving a heap of money, not to mention the unnecessary and debilitating side-effects for that 85% of patients who won’t benefit. It didn’t take her long—she discovered a test with 100% correlation. The next step was to secure funding for a large scale trial. But, ‘I couldn’t get any of the pharma companies interested in helping to develop the prediction,’ she said, ‘because it would have cost them 85% of their sales.’

Continue reading It’s official—our health business model is sick

The joke

I told my GP a joke the other day. It was only a short joke, one of the few I know by heart. She pressed her hands to her cheeks and stared at me.

Dr G is a broadminded, competent, compassionate doctor. She’s quite easy-going. I arrived at one appointment to find her wearing shorts and a T-shirt; she shrugged—’I just didn’t feel like wearing work clothes today’. But she does come from a culture not known for its ready sense of humour. She was probably concerned for the character who was the butt of the joke—so to speak. That character, through a degree of dementia perhaps, had a self-inflicted injury—okay, maybe not an injury as such. But there would have been some discomfort. Not to mention inconvenience.

Continue reading The joke

Us and Them? Really?

Goulburn Shopping Centre, 11 am last Tuesday. I’m waiting for someone to vacate the disabled toilet. I see a dim form approach the frosted glass door and as it slides open my suspicions are confirmed: an able-bodied person.

As he steps out he looks down at me (I’m on my small electric scooter), says, ‘Sorry!’ and starts to move away down the corridor.

‘Wait,’ I say. ‘Did you really need the disabled toilet?’

Continue reading Us and Them? Really?

80 per cent curiosity, 20 per cent hope

On the highway, heading into Bega. Royal blue summer sky, black and white cows dotted across unseasonably green hills.

I turn to the Mechanic. ‘I think I might be depressed.’

‘Well, that’s fair enough,’ he says. ‘I’d be depressed if I were you, considering everything. I’m amazed you’re not depressed more often.’

As validating as I find this, it hardly makes me feel better.

Continue reading 80 per cent curiosity, 20 per cent hope

Quaama Express

dogs

You’d laugh to see us on the street
The scooter, me, my doggies dear
The small one, Wookie, leads the way
The big one, Rudy, in the rear.

They’re both tied up, I’m sad to say,
Can’t trust either not to stray,
Rudy cos he hunts down chooks.
That’s cost me dearly. As for Wook,

Abandoned in Kiama town,
He learned to live upon his wits,
And feasted daily on remains
Of battered fish and salty chips.

And now when winds of freedom stir
His shaggy coat, this ratbag cur,
Don’t bother chasing. If you do,
He’ll grin, ‘Oh, good, you’re coming too!’

But as for Rudy, ridgeback hound,
Sixty kilos go to ground.
Unless his sights are on a chook,
He’ll plod and give the lead to Wook.

‘You hardly need a battery!’
Some wit will call, reliably.
I muster up a laugh. I’m sure
I’ve heard it ninety times or more.