From the Pocket: Neale Daniher's no-nonsense nature keeps Big Freeze from slipping into cliche

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2 days ago

It starts with a sore toe, difficulty tying a shoelace, a tingle in a finger. Author Joe Hammond found himself 'like a passenger in the aisle of a plane going through gentle turbulence'. For Ross Lyon's mum, Louise, it started with a twitch in her calf muscle. Within a few months, she couldn't move her arms or legs. Within a year, it was in her throat, and she was unable to breathe.
For Don Pyke's father, Frank, it started with difficulty swallowing. He was a professor and a sports scientist and a member of the Sport Australia Hall of Fame. In the early 1970s, he played a key role in rehabilitating Dennis Lillee's back. Motor neurone disease (MND) killed him in 16 weeks.
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For Neale Daniher, it started in his hands. He found it hard to peg his shirts on the clothesline. He fumbled with his car keys. A friend noticed his handshake had weakened.
Daniher calls it 'the beast' but doctors, researchers, patients and carers around the world call it 'the bastard'. Every day in Australia, two people are diagnosed and two people die. Prof Brad Turner of the Florey Institute says it's 'the most incapacitating disease of our species'.
The Danihers are farming people from the baking red dirt of the Riverina. Neale and his 10 brothers and sisters quickly learned there was no room for sentimentality and self-pity. On the farm, you planned for the worst. You never complained. You worked hard. You got on with it. You learned that so much in this world is beyond your control.
Neale was the only Daniher sent away to boarding school. He didn't want to be a farmer. He was too curious, too introspective, too restless for that life. He studied theology for a year at the University of Melbourne. He was coached by Ray Carroll at Assumption College and Kevin Sheedy at Essendon, and his own coaching tenure melded their ferocity and cunning. Many of his former players were amazed at the wise-cracking man who emerged later in life. Having been kept at arms-length during their playing careers, so many of them have built enduring, meaningful relationships with the man they once feared, and now adore.
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It's more than a dozen years since Daniher was diagnosed with MND. It's a decade since the inaugural Big Freeze match. So much has changed in that time. The queen's birthday is now the king's birthday. Both Melbourne and Collingwood have cycled between ineptitude and success. Daniher, initially given 27 months at best, has walked two daughters down the aisle, welcomed grandchildren, and been named Australian of the Year. He now uses gaze interaction technology to communicate, utilising his voice from old press conferences. After being woefully underfunded for so long, there's better understanding of MND, there's groundbreaking research, and there's cautious optimism that this thing can eventually be beaten.
Initiatives such as the Big Freeze could easily drown in cliche. It could get drawn into tired analogies of sport and death. Football could easily strain to mean more than it does. That was never going to happen with Daniher. He hates it when people call him a hero. He doesn't want pity. He wants a cure.
'When you're dying,' Daniher wrote in his book, 'everyone thinks you're a great bloke. When I was footballer, they had me in the 'natural born leader' box and then the 'unfulfilled talent' box. As a coach they put me in the 'intense bastard' box and now that I have a terminal illness I'm in the 'such an inspiration' box.'
Reading that, I think of something The Sopranos creator, David Chase, said: 'Whatever the opposite of bullshit is, that's what I think Jim Gandolfini was searching for.' In every utterance, every joke, every deflection, every dollar raised, that's Daniher – the complete absence of bullshit.
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MND takes nearly everything. It takes your ability to walk, to talk, to hug, to eat, to cry and, eventually, to breathe. I could reel off words like 'inspiration' and 'spirit' and 'courage' and 'grace', but none of them could do justice to what Daniher and the sufferers of MND endure. I think again of that quote – 'the most incapacitating disease of our species'. If that's the case, few could look at Daniher and not see the very best of the species. But he'd say that was bullshit.