THIS IS Neale Daniher.
Sitting in his chair, on stage, wife Jan sitting alongside and talking to an entranced audience about the condition killing her man a day at a time.
As important as her message is, her man would rather be cracking jokes.
No matter where you have seen Neale Daniher since his diagnosis of MND took over his life in 2013, chances are you have seen him yanking his own chain, mocking his own mortality.
That’s who he is, an ordinary man who has been elevated to the extraordinary because he has taken on the fight he was never going to win.
I first met Daniher during a reception at Hopwood Gardens almost a year ago.
At which point he told me, matter-of-fact, with no sense of self-pity: “I’m worse than I was six months ago, but I’m better than I will be in six months’ time.”
He was right.
Yet this former athlete, why, by and large would have become a footnote in the annals of sport, has now become something truly special.
Because his goal isn’t his own salvation, instead he is determined to do everything he can in the little time he has left, to increase public awareness of this most dehumanising of diseases and to raise money to help fight it and save future victims.
He was in town then as part of Daniher’s Drive, the second biggest fundraising event that Fight MND holds each year, behind the national sensation that is the Big Freeze.
That day, in a public reception, we watched hundreds of people come out and meet the man – footy fans, concerned residents and his peers, those facing down the disease as well.
It’s now August, 2018 and this time round Daniher is at the Rich River Golf Club.
McLardy McShane Financial Services (its chief executive Don McLardy is a former Melbourne Football Club president) is running its annual golf day to raise money for Fight MND and Reach, the charity of the late Jim Stynes.
On the surface Daniher’s condition doesn’t appear any worse.
Mike Sheehan, the elder statesman of AFL media, asked him about this, suggesting to him he may be keeping the disease at bay.
“No, Mike,” Daniher stops the humour for a second.
“It’s killing me, I’m dying.
“This is a progressive illness, it is going to kill me as it gets worse, there is no changing that.
“Where I am lucky is that mine is progressing at a far slower rate than most people.”
Typically, when you are diagnosed with the beast, you have three years.
Five if you’re lucky.
Professor Stephen Hawking, who lived with the condition for nearly 60 years, was the exception not the rule.
Daniher left the game he loved in 2013 after choosing to focus on his fight.
It’s been close to five years now, and this remarkable story lives on, Daniher is still in there fighting.
“I think I still have a couple of years left,” he said.
“I don’t know if when we do the Big Freeze next year I will be able to talk, but the show will go on when I’m not.”
Mike Sheehan batted this back.
“How does it go on without you?”
“Football television went on when you retired Mike,” Daniher responded, cracking up the packed room watching the on-stage banter.
But the greatest gift Daniher delivers is his ability to compel people around him to take up arms in the fight against the beast.
“It’s a disease I didn’t know much about,” former Brisbane Lions champion Jonathan Brown said.
“You read a bit about Lou Gehrig’s disease (MND is commonly called this in America, after former New York Yankee Lou Gehrig was diagnosed with the condition while still playing) but it’s a condition about which you don’t know a great deal.
“What Neale has done is bring it to our attention; it’s something we now know about now, and now as a community we want to get on board.”
And it’s not just a group of businessmen playing golf that Daniher has reached.
On Thursday morning, he entered the auditorium at St Joseph’s College in front of an entire school.
He was there to receive the money raised by student Lucia Rochford in her Run Melbourne event.
Lucia had run a major raffle across the town to raise money for her hero’s cause.
“My name is Neale Daniher. I have a terminal illness, but I promise you I won’t die on the stage today,” he said.
Few can captivate an audience in the way this guy can.
This crowd of young people, few who would have even recognise the fragility of life, of their own lives, seemed spellbound as this main spelt out some hard truths.
“Life isn’t fair,” he told them.
“The best thing you can do is to enjoy it, enjoy what you get and have as much fun as you can while you’re here.”
Unable to draw the raffle himself, he called on the crowd, anyone in a Fight MND beanie was fair game to come up and pick the winners for him.
With the day over, and more than $3000 going to the cause through Lucia’s hard work, he stood at the top of the auditorium and took the endless series of photos with people who wanted to share the moment they stood in the presence of Neale Daniher.
When it was over, I parked my professionalism in my back pocket (for a minute) and politely asked him for an interview instead of the usual assumption one would be given.
He was only too happy to oblige, leaning his back against the wall in a brief moment of relaxation.
“I like being in the country,” he said.
“I’m a country boy. I live in Melbourne now, but I’m still a country boy, and I love getting to meet the country kids.
“It’s special getting to acknowledge what Lucia’s done, she’d done something very special, and I’m glad I get to share that with her.
“She’s a great example to everyone about giving back to the community; it’s something we can all do.”
Every moment on his journey to help find a cure is special to Daniher.
“I loved being a part of yesterday, McLardy McShane has been huge contributors to Fight MND, and that means a great deal to me. It’s nice getting to give a little back to them for all they’ve done for our cause.”
But while he wants to give back to those helping the fight, it’s even harder for those in his presence to not want to leap into the trenches beside him and join the war.
The beast may be getting him, is getting to him, taking him closer to the day where he can no longer fight, but Daniher has built battalions of fans to maintain the rage in his memory.
This is Neale Daniher.
He won’t be the man who slays the beast himself.
But he just might have created the army to finally win the war.