Category Archives: MS and life

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


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.

Something to lean on

wheelchairI was listening to a podcast of Richard Fidler interviewing Tim Ferguson the other day. You may remember Ferguson as one of the Doug Anthony Allstars. Long and lanky with a sweep of black hair across his brow, he was often referred to as ‘the good-looking one’—so he says, anyway. Fidler was an Allstar too, and that moody, misanthropic genius Paul McDermott was the third.

I’ve been watching Ferguson’s career a lot more closely since I learned he had MS. I bought his memoir, Carry a Big Stick (2013), and it was good to read about someone just getting on with it, despite. Lately he’s written and directed a movie.

Continue reading Something to lean on

A sprinkle of charged glitter

The Scream, Edvard Munch
The Scream, Edvard Munch

Neuralgia again. Or is it? I’ve written about neuralgia—nerve pain—before, but this time it’s different. In the past it has started slowly—the occasional subtle ping, gaining in intensity and frequency, rising to a crescendo of penetrating stabs, seconds apart, with little relief between. Then subsiding again over hours, or a few days at most.

But this one has a different personality altogether. It strikes at random, speeds up and slows down at will. It can disappear for minutes on end, but as soon as I dare hope it’s gone, it’s back—tricked you! Conversely, it can cease just when I place attention on it. It can feel like a perverse, extended game of hide-and-seek with a toddler.

Continue reading A sprinkle of charged glitter


tmp_6474-IMG_0559-39646798We’re on the ferry from Puttgarden, Germany, to Copenhagen. Bleak skies, choppy, grey water, the mournful cries of gulls. Grim Scandinavians frown into their shot glasses around me while I sit in the bar, reading. Then, from somewhere unseen, Wallander’s ringtone. I know it’s not Sweden—not quite—but my stomach drops. It always portends some alarming development when Wallander’s phone rings.


Continue reading Scandi-voir

Notes from the Eurozone

Marcel, Brigitte, Hetty and Stefan. Branca took the photo.
The Mechanic’s nephew Marcel, niece Brigitte, sister Hetty and grand-nephew Stefan. Niece Branca took the photo.

A café at Schiphol Airport—Amsterdam. I ask for a decaf soy latte.
The waiter tips his head back a little. ‘We have no soy milk,’ he says.
‘No soy at all?’
‘No. Starbucks has soy milk.’
There’s a challenge in his expression. Am I the type to decamp for Starbucks? Or am I a sophisticated euro traveller? He flicks a glance around our table of seven.
I stare him down. ‘I’ll have a cup of tea. Black tea.’
He smiles faintly and taps his stylus on his tablet. Around us, diners return to their conversations, waitstaff to their orders. The hum and clatter of the cafe resumes.


Continue reading Notes from the Eurozone

To sleep, perchance.

Photo: Lachlan MacDonald
Photo: Lachlan MacDonald

Hush, the babies are sleeping, the farmers, the fishers, the tradesmen and pensioners, cobbler, schoolteacher, postman and publican, the undertaker and the fancy woman, drunkard, dressmaker, preacher, policeman … And the anthracite statues of the horses sleep in the fields, and the cows in the byres, and the dogs in the wet-nosed yards; and the cats nap in the slant corners or lope sly, streaking and needling, on the one cloud of the roofs.

You can hear the dew falling, and the hushed town breathing.

Only your eyes are unclosed to see the black and folded town fast, and slow, asleep.

Dylan Thomas could have written the opening of Under Milkwood for me, prowling around the house at two, three, four o’clock in the morning, while the gentlefolk—and stock, and pets—of Quaama village slumber on. Or maybe not the cats. I hear them prowling too, and yowling their territorial warnings.

Continue reading To sleep, perchance.

Mud, sweat and fears


I often think of Nelson Mandela as I wait, door ajar, for my shower to warm up. I have done so for years, ever since I read his autobiography. Mandela, imprisoned on Robben Island, had to endure cold showers for 30 years. It gets pretty icy on Robben Island. And I whinge about waiting 15 seconds for the water to run warm.

Of course, cold water isn’t my problem; hot water is. I used to wonder why I felt like a ragdoll after my shower, weak and unbalanced for half an hour or more. Now I know to keep the temperature moderate. No hot water on my head or back.

And don’t start me on hot baths! These days they’re a rare luxury for when I know I don’t have anything else to do that night – and when the Mechanic’s there to help me climb out. Or for severe neuralgia episodes, when a brief bout of lower limb paralysis is a small price to pay to make the pain go away.

Continue reading Mud, sweat and fears