AFL legend Neale Daniher reveals life lessons in new book as he battles with motor neurone disease
Unable to speak or write, Neale Daniher is not afraid of dying. But now, he is using only his eyes to tell his most powerful story yet about choosing how to live. SEE THE VIDEO
Neale Daniher lost the power of speech some time ago, which is a bugger, because he still has plenty to say.
He cannot talk. He cannot write. Daniher’s restless mind would be lost to us, except for something called Eyegaze, which reads the movement of his eyeball so that he can type responses for an automated voice to deliver.
His means of communication does not extend to the banter he once enjoyed around the table or on the golf course.
As his voice explains, after a lengthy pause, his disease disqualifies him from everyday chatter, a handicap he says “shits me”.
But the technology does allow the Australian of the Year to answer questions and, as it happens, write books.
Motor neurone disease (MND) has stolen Daniher’s spontaneity but not yet his smile. That’s what you most notice, whether he’s propped up on stage or in his front room at home. Daniher is slated for death, yet he always radiates a joy for being in the moment.
Death doesn’t frighten him; he’s been living with it (and questions about it) since his diagnosis in 2013. Its spectre is a part of his life: he neither seeks it nor shies from it.
There are gnarled knuckles on his hands, which are stiff from the wrist and curled like useless flippers, and brown slippers over stripy socks.
A full-time carer is never far away.
Daniher, 64, sits in his padded chair in his Canterbury home in Melbourne’s inner east, pleased that the first copy of his book, The Power of Choice, has just landed.
Long silences punctuate the next hour. This cannot be helped. Daniher composes his responses then commandeers compliant neck muscles to look at you as the voice – which today sounds a lot like HAL from 2010: A Space Odyssey – announces his thoughts.
This back and forth of question and answer can be, he admits in his book, “bloody exhausting”.
Yet the lasting impression is not of pity. You leave enriched by the buoyancy of Daniher’s message.
He can barely move, but there’s a sangfroid about Daniher which eludes most of us who can move freely. He says MND will kill him, but it won’t beat him. His thoughtfulness lodges in the memory. Alongside his pursuit of mirth. And his joy of music.
Sent some questions a week earlier, Daniher’s replies were thoughtful and thorough.
He misses most being able to talk and to laugh, he says, and to hug and to touch. He misses not being able to chase and bond with his grandkids. Daniher and his wife Jan, 63, have four children – Lauren, 39, Luke, 37, Bec, 35 and Ben, 32 – and six beautiful grandchildren.
He has dedicated the new book to these special six little people – Cooper, Rosie, Ollie, Billie, Grace and Hazel.
He writes a letter to them in the book from “Poppy”, telling them how lucky he feels to have been around long enough to meet them and enjoy “your smiles, your energy, your quirks and your little personalities’’.
“No matter the odds, no matter the diagnosis, we all have the power to choose,’’ he writes.
“Every day I choose to fight, to smile and to do something. Because the mark of a person isn’t what they say, it’s what they do.
“My hope for you is simple: that you choose wisely.’’
He explains that terminal illness doesn’t make you wiser, but it does put “everything you believe to the test”.
He quotes French philosopher Michel de Montaigne, who said that fearing death stemmed from not having lived enough, and that life lived with integrity and attention dimmed the dread of death’s inevitability.
“If I was to die tomorrow I would say I have had a fortunate life,” Daniher writes.
“I have lived enough.”
Daniher’s upbringing as one of 11 kids in theNSW Riverina, where the paddocks “cracked open like old skin”, generally precluded the expression of deep feelings.
His “don’t complain, don’t explain” ethos underwrote his approach to playing VFL (AFL) at 18, three knee operations in a career marked by the unfairness of injuries, and an AFL coaching career that, as most coaching careers do, ended in loss.
He now says the threads of his pre-MND perch were not woven by triumphs, and there were a few, but rather by those moments when hopes were dashed, when some pathways closed and other pathways opened. Back then, Daniher thought he knew what he knew. It amounted to: try harder to get better. This approach certainly brought success and comfort, yet he recognises now how it also blinded him.
Terminal illness opened alternatives of thinking he otherwise may not have glimpsed.
Daniher doesn’t want to die. He fights against his growing inability to swallow saliva and a bulging list of privations that need not be aired.
MND is bloody awful. But its presence has also brought purpose, which is one of the starting pillars to contentment and satisfaction.
If this sounds dangerously close to self-help patter, then trust that Daniher, a layman scholar of lauded shrinks such as Viktor Frankl and Martin Seligman, also instinctively rails against wankiness.
His new book doesn’t seek to fix your life – only you can address that. But he hopes the book might make it better.
Back in 2023, Daniher emailed publishing consultant Andrea McNamara, who sits in on today’s chat. They had worked together on his 2019 book, When All is Said & Done (written with Warwick Green), when Daniher could still speak, with a thickness that muffled his words.
Writing a book, with McNamara’s assistance, had set up a clash of patience (her) and impatience (him).
“Are you sitting down?” he wrote in the email. “I think I want to write another book.”
Daniher wanted to take his “brain for a run”, to tackle a challenge that went deeper than his usual pastimes of reading and podcasts and sneaky episodes of The Simpsons or
The Sopranos.
Again, there would be robust conversations between Daniher and McNamara. If she seemed tired or distracted when she arrived for their weekly catch-ups, he would tell her so.
Once, she blew up at him, then agonised about it. She recalls a rare moment when Daniher ceded control on this or that book detail, then offered a reminder of the drollery that the world doesn’t hear much anymore.
“I thought, ‘Great, good, I can get that done’,” McNamara says.
“There was this pause, then I hear: ‘Don’t f--k it up’.”
Sorting out the format – Daniher originally suggested a coffee-table book of inspirational quotes – consumed the first year of their chats.
The book couldn’t be random grabs of this or that. But nor should it be a weighty tome – “The Reverend”, as he was nicknamed during his coaching career, doesn’t do preachy.
The book had to sound like Daniher – no bullshit, no shows of vanity, and a healthy contempt for pretentiousness. The premise was simple.
While we cannot always choose our circumstances, we can always choose how we respond to them.
“Why me?” offers little scope for growth. But “what now?” offers a lot.
The book invokes learned optimism, encourages readers to “unlearn” their beliefs and biases, and to be curious.
“Engaging with the world and going outside your own needs and wants is so important,” he says.
“Happiness may come and go, but understanding helps you make sense of it all. It gives you a bit of perspective, which is far more valuable when life throws you a curveball.”
The book is easy to read, despite borrowing ideas from Ancient Greece and 16th century France. Willie Nelson is there, along with one Michael Jordan, who once said: “I’ve failed over and over and over again in my life. And that is why I succeed.”
Daniher has long bowed to Viktor Frankl, who survived Nazi concentration camps and later postulated that those prisoners most likely to live felt a greater sense of purpose or meaning. Seligman, too, was a revelation to Daniher – a psychologist who focused on what was right with us rather than what was wrong.
Unlearning is a vital part of learning.
The young footballer Daniher lived according to certainties. You won – or you lost. You kicked the goal – or you missed.
The older Daniher wishes the younger version had listened more, and had made more time for fun, and had not confused stubbornness with strength. He didn’t stop to wonder why he was chasing what he was chasing.
“Unlearning is the hardest part of changing belief,” he says. “I’m curious how the beliefs chapter will be received by readers because everyone thinks that their beliefs are right.
“Uncertainty is unnerving but where the biggest progress is made.”
Daniher faced a list of stiffer challenges which differs from others. He couldn’t be seen to be vulnerable, because competitors didn’t show fear. He couldn’t ask for help, because doing so implied weakness.
MND helped scuttle such pretensions. Despite his “rough head”, he became the face of finding an MND cure (FightMND has so far raised more than $130m), a role which blew away his natural preference for privacy.
MND sharpened Daniher’s need for meaning. His body shrunk and his mind grew. He offered inventories of which body parts worked – and which did not. He gave interviews in which his words were hard to decipher.
He was a case study in wretched fate, yes, but also in the “opportunities” it had foisted upon him. He commanded dignity where ordinarily there would be none.
“Live with hope,” he told players at his former club, Melbourne, more than a decade ago.
“Have the courage to accept responsibility,” he told the same club of players six years ago, in an address aimed directly at his young grandson, Cooper.
Daniher figured out a few things.
Habits, good or bad, come to be who you are. Practise good ones so that they no longer need to be practised. Will setbacks be deadends or stepping stones? Will the travails of life box you up or open you up? There’s wisdom in Daniher’s acknowledgment that self-improvement is generally only pursued in moments of extreme need. But he invites readers to grasp that the pain of staying the same is deeper than the pain of change.
“The thing is, you don’t know how bright the stars are unless you keep your eyes open,” he says in the book. “Nothing is darker than closing your eyes to possibilities.”
The prospect of death has been “a reality and a companion” for more than a decade. Has Daniher explored assisted dying options?
“Yes, I have,” he begins, after the question hangs in the silence of a very long minute.
“That is an option but I don’t want to be an advocate for that. I want to advocate for MND research, so I won’t go down that rabbit hole.”
A self-declared expert on all music ’60s, ’70s and ’80s, asked about his favourite song, his response, The Logical Song by Supertramp, blasts from his Eyegaze machine.
Daniher beams with contagious merriment. His left leg starts to jiggle at the top of the opening verse. His shoulders sway.
In this moment, the lifeforce within outwits the ravages of a terminal disease.
Daniher had gone to boarding school in the years before the song’s 1979 release.
Its message still resonates with him:
“But then they sent me away to teach me how to be sensible / Logical, oh, responsible, practical / And then they showed me a world where I could be so dependable / Oh, clinical, oh, intellectual, cynical …”
Is there another book in him? “I’m done,” Daniher says. “Promise?” McNamara asks.
It’s time to go. I tell Daniher that I’ll try to write a decent story.
“Thanks, Patrick,” the computer-generated voice replies. “Don’t f--k it up.”
The Power of Choice by Neale Daniher (Macmillan Australia, $40) is out November 11.
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