“Parkinson’s disease” – my father never spoke these words before he died eight years ago from pneumonia associated with his decades-long endurance of this dreadful affliction.
My mother, who saw him through the worst of it until she could no longer do so, never said them. Neither did the doctors – not to his children at least.
Dad tried to keep the disease a secret from us even though the symptoms made the affliction obvious. After his death Mum said he’d never even admitted to her that Parkinson’s disease was killing him.
Maybe he was too proud to admit that something beyond his control, something so humiliating, had him in its python grip. He might’ve feared, irrationally of course, that we’d think less of him. Who knows? We never talked about that – and so much else besides.
I’ve long admired the journalism of Liz Jackson, the multi-award winning ABC broadcaster and film-maker. To me she has always been prominent in a milieu of journalists from the broadcaster who have shown us later generations the way.
And now my respect for her has grown further, having watched her heartbreaking documentary, A Sense of Self, about her diagnosis with – and life since – Parkinson’s.
Her candour and courage and humour in the face of the disease and for her decision to tell the story of her family’s experiences is beyond admiration. Ditto her dignity, in volunteering that she tried for a while to hide the disease from her children out of fear they might see her as weak, or colour their enduring impressions of her.
Then there’s her journalistic professionalism – to tell the story come what the hell may and probably will; the legacy grows exponentially. There is a lake of tears for Liz Jackson now, but not for the pity she despises. No, it’s to celebrate a world that can make a woman who Google-doctors her symptoms, understands the shitful truth of it all but continues to do brilliant work and goes from doctor to doctor to outrun it – and make this documentary.
Anyone familiar with Liz Jackson and who saw the program would be shocked at her decline. It illustrates starkly what a cruel, bastard of a disease Parkinson’s is, the way it robs one of bodily, intellectual and emotional control, and renders the previously strong so terribly, terribly prematurely frail.
The program is remarkable, however, for the humanity with which she emerges – a person defined by everything else that she is, except the disease, really.
It is one of the most moving and important pieces of television I’ve seen, for the way it effectively transcends its immediate subjects so that it might interrogate and provoke us into considering how we approach and judge and emotionally respond to the dreadfully ill in our midst.
Dad was completely exhausted, wrung-out – a physical husk of a man – when he finally succumbed. He fought and fought and never really lost he will to live because he loved life and his kids, and especially his grandkids, so much.
He was a modest though proud bloke. Which is perhaps why he never volunteered what he had. And we never pushed him. When I think back, he probably lived with it for 20 years. But somehow, he kept the drug regimen a secret from us.
Even in his final months at home, before we intervened to move him into supported living because caring for him was going to kill our elderly mother, he would pretend it wasn’t happening. He’d sit there in his chair, drinking tea or on family occasions (which he loved), wine, through a straw, his hands shaking so violently that we’d want to help him.
Mum would give us a look that meant, “No,” then rescue his dignity, mop up, without a word or missing a beat, whatever he’d spilt on the floor or himself.
Parkinson’s is a dreadful curse. But nobody knows why we get it. Those who’ve seen a family member succumb to it reassure themselves that it is not hereditary. But its very mystery is testimony to the importance of what Liz Jackson has done in highlighting the cruelty and tragedy that freights it.
I have several friends who’ve lost loved ones to Parkinson’s. There is no common experience. Not all sufferers will endure the same symptoms. Dad had terrible tremors, he lost the capacity to write legibly, to remember – and say – names, even of family members such as my wife – and eventually he had terrible dementia.
But he was never afflicted with the depression and the panic attacks that have crippled Liz Jackson.
Just as my dad was spared her panic attacks and depression, I hope she and other Parkinson’s sufferers are spared his dementia.
In a way that was the hardest thing for us.
The dying months of the Bulletin magazine, for which I wrote, coincided with Dad’s terminal decline. Dad, though he never said so, read everything I ever wrote.
In late 2007 I skived off the federal election campaign when John Howard’s caravan passed through Melbourne. He was sitting in front of a TV in the nursing home, the Bulletin open, on his lap, at my story.
He looked at me. His eyes were blank. He no longer seemed to know me.
Thank you again Liz Jackson.
Thank you, Liz Jackson, for your candour and courage in facing a bastard of a disease | Paul Daley
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