If you ask Neale Daniher about the bald, brutal reality of living with motor neurone disease (MND), you won’t hear him complain. Apparently he never does, and he’s not inclined to start now. When pressed, though, he describes it as a daily battle.
“You never totally accept it,” says the 58-year-old. “The voice is never far away, saying, ‘You’re f**ked, mate’. One minute you might be able to lift a fork, the next you can’t. You get a little cold and can’t cough, and you feel like you’re drowning.”
At this point, Neale can’t cradle his grandkids in his arms, can’t brush his teeth or sometimes even catch his breath. But this is what he can do: he can jiggle his legs to rock his newborn granddaughter to sleep on his lap; he can share a cracking bottle of red and some laughs with his wife and four kids; and he can raise millions of dollars to fight the incurable disease he has dubbed “The Beast”.
For Neale, it’s the second list that counts – and every day he chooses to dwell on the positive. “I didn’t choose MND,” he says. “My only choice is my attitude and how I deal with it.”
Neale has decided to dedicate the time he has left to finding a cure, and has won admirers all over the country with his courageous, tireless commitment. One of the AFL’s four famous Daniher brothers, Neale played for Essendon in the 1980s, and later coached Melbourne to a grand final – lending his voice to MND research has proved a gamechanger for the cause.
Charity begins at home
Since he co-founded FightMND in 2014, its fundraising tally has topped $40 million – fed by campaigns like the Big Freeze, which sends celebrities into icy water at the MCG every Queen’s Birthday weekend. This year the sale of beanies alone raised $3.2 million.
When he took up the fight five years ago, Neale never expected to save himself – what he wanted was a purpose to help him transcend his situation.
“The disease was going to kill me, but surely we could find a way to change the outlook for the next generation,” he explains. “There is always opportunity to be found, even when you’re dying.” Life doesn’t promise to be fair, he says, but everyone has the power – even in their darkest days – to make their life matter.
Facing death, Neale has inevitably reflected on life. A self-described “thinker”, he has always been on a spiritual quest, but last year, when he learned his son Luke was expecting a baby, he decided to distil his beliefs into a book for the grandchildren he might never meet. Part memoir and part manifesto, When All is Said & Done tells Neale’s story, interspersed with life lessons he has picked up along the way – musings on love and leadership, friendship and forgiveness.
Today, in his comfortable home in Melbourne’s leafy eastern suburbs, Neale’s freshly printed hardback sits on the coffee table as the Danihers buzz about the living room. Recent holiday snaps of the four kids together – including Luke, who now lives in Perth – are stuck on the fridge, and their Labrador, Murphy, is sprawled out in the spring sun.
Neale sits on the sofa, his hands limp in his lap. His speech is slurred and he occasionally struggles to take a breath. Yet, he says, he’s luckier than most MND sufferers: “Only about 10 percent live longer than five or six years after diagnosis,” he points out, “and I’ll be one of them.”
He has witnessed Luke’s wedding, walked both daughters down the aisle, and met his first two grandchildren, none of which he thought he’d do. And now he has produced a book to guide them when he’s no longer here to do it himself. It tackles nothing less than the meaning of life. Each chapter is labelled with a self-styled truism, such as “Grow through what you go through”, “Don’t let the bastards win both ways” and “When you’re dying, everyone thinks you’re a great bloke”. Neale calls it “dunny door wisdom”, and he has been collecting it all his life – ever since he was growing up, the third of 11 kids, on a farm in Ungarie in NSW’s Central West.
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