Adrian Barich: Neale Daniher, the strongest bloke I know, fights to rid the world of motor neurone disease
It’s been described as the worst club in the world.
Footy legend Neale Daniher is a member of this dreaded club and he wants us all to help him beat this beast called motor neurone disease (MND).
His dream is for us all to live in a world free of this terrible illness. It’s known as the 1000-day disease, but Stephen Hawking survived more than 20,000 days after his diagnosis and if you watched The Big Freeze AFL match recently, you’d have seen Neale at the MCG, still a force to be reckoned with after more than 10 years.
I also have a beautiful friend named Damian who suffers from MND. He’s the most passionate Perth Football Club supporter I know and his deep love for our footy club is a big part of why we’re all desperate to win another premiership at the Demons.
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I also know a wonderful lady who’s all but dedicated her life to finding a cure. In an incredibly cruel twist of fate, she lost six members of her family to MND: her grandmother, a great aunt, her dad, her uncle, her first cousin and most recently her sister.
All died before their time and without hope of a cure. Knowing that this form of MND is associated with a gene mutation that can be passed on still terrorises the family, so Assunta started the charity, Racing For MNDi, to help find answers.
As Assunta says, “There’s still so much we don’t understand about this horrible disease and it continues to take lives with unimaginable cruelty.”
Neale Daniher is seen after the FightMND Big Freeze. Credit: Jonathan DiMaggio/Getty Images
One of the most powerful books I’ve read is about MND, or ALS as they call it in the US. It’s sometimes also known as Lou Gehrig’s Disease after the famous baseballer who was afflicted.
Tuesdays With Morrie is based on the conversations author Mitch Albom had as he spent every Tuesday with his old uni professor Morrie Schwartz. The book is a magical chronicle of their time together, with Mitch sharing Morrie’s thoughts on life as he deals with MND.
It is a book about an old man’s reflections, I suppose you’d say, with profound statements including, “Now that I’m suffering, I feel closer to people who suffer than I ever did before . . . I feel their anguish as if it were my own”.
His favourite topic (surprisingly or maybe unsurprisingly) is death, and maybe his most powerful pronouncement is “once you learn how to die, you learn how to live”.
In other words, people who haven’t come to grips with the fact that they could die at any time tend to get caught up in things like materialism (that is buying too much stuff), rather than focusing on things that are truly fulfilling.
Morrie was huge on family too, just like the Danihers.
He advises us to “love each other or perish”, adding that having people in your life who are there to protect you is very powerful. Rather than focusing on money and power, we should focus on love, family and respect.
As Mitch writes, “If my old professor Morrie Schwartz taught me anything at all, it was this: there is no such thing as ‘too late’ in life.” The author even reconnects with his long estranged brother; and then dedicates the book to him.
In a salute to teaching, there’s even a quote from historian Henry Adams: “A teacher affects eternity; he can never tell where his influence stops.”
What is clear is we can all learn from Morrie, Damian, Assunta and Neale. As the Daniher family says, “We will pull on this blue beanie year after year until a cure is found. MND may be relentless, but so are we.”
I reckon in Neale’s mind, he’s shunned pity and decided to put his armour back on and proclaim, f... you MND. He may not be able to speak without a machine, he may not be able to raise his arms but he’s the strongest, most inspirational bloke I know.
People talk of being destroyed by their diagnosis, of being robbed of a future. One describes the slow creeping nature of the illness as almost like “disappearing in quicksand”.
I heard one man has banked his voice, recording his favourite expressions and phrases knowing that one day his speech will become too slurred to be understood. The voice machine won’t produce a perfect replica of his natural speech, but it will bear some resemblance.
What would you start with? Thank you. I love you. Can I have a beer please. Those umpires have got to be kidding. Can I have a skim milk cappuccino with one sugar? Please no bloody coriander. I don’t know if I’ll see you again but I’ll never forget you.
It was wonderful to see beloved journalist Nick Way be posthumously awarded an Order of Australia medal last week for services to the media and the community.
Nick was diagnosed with motor neurone disease in 2020 and became a patron of the Racing for MNDi Foundation. I’ll always remember him for his work with the Kingsley Football Club after the Bali bombing in 2002.
As he said at the time, “It was never about us. It was about compassion and caring, even in the midst of the competitive melee of global media coverage.”