In 2016 he saw a program on Neale Daniher talking about his struggle with motor neurone disease. By then the tingling in his feet was also in his left hand.
He said to my mum: "This is what I have."
He was right. My stepfather, Maurie Fowler, was diagnosed with MND less than a year ago and the progression of the disease was ferocious and unrelenting. In the early hours of Monday morning he passed away. Mum was curled up beside him.
MND is a cruel diagnosis. There is no effective treatment, no cure, really no hope. While the muscles waste and the body is paralysed, the mind is alive and increasingly desperate at the radical and inexplicable change in its function — it no longer has a body to control.
Towards the end, Maurie could move only his right hand a little, with great effort. But his eyes followed everyone across a room and the day before he died he listened to Carlton win and he squeezed my hand as tight as he could when I promised him we would look after Mum.
I am not sure if there are good ways to die.
MND is not one of them. This week is National MND Week; every day two Australians are diagnosed with the disease and every day another two die from it. The peculiarity of the disease is that the sufferer is an alert witness to the dying of their bodies, yet they cannot talk or move.
What Maurie did have was some time to reflect on his life and some time for people to say goodbye. In the months before he died, he dictated a version of his life. He was a natural and precise orator. He wanted to tell his story in a truthful way. He described his regrets, of which there were more than a few. But the overriding theme was the importance of friendship, respect, optimism and humour.
He called his book The Shit Stirrer because he delighted in loud, brassy discussions about politics, football and climate change. In his words "opinions were gold and I knew there was only ever a 50 per cent chance that I was right".
When he was 16, Maurie became one of Carlton’s youngest signings. He played 10 senior games and took delight in the fact that after a couple of great matches, teammates like Ron Barassi and Percy Jones started to notice the kid from the Goulburn Valley. He writes in his memoir that the glare and intensity of league football didn’t really suit him — he wanted to go home and play with footy with his mates.
It took some prodding to get Maurie to move on from retelling the Kyabram footy club’s golden days. We were running out of time, Maurie had little voice left and we were only up to the birth of his two sons. We had to race through his years of footy coaching around Australia, driving a bus in Tassie and Ocean Grove, his time running an Irish pub in Mt Gambier, his falling in love with Mum. We all knew Maurie well and yet there were parts of his life we didn’t know.
It was a reminder that every life is unique and surprising.
The indignity of MND was countered by the care and dignity that he received from his family and the nurses and doctors at the Grace McKellar Centre, where he spent the last seven weeks of his life. Maurie was desperate to do his bit to find a cure for MND, not just for the sufferers but for the families and carers who are equally traumatised by the disease. He wrote: "I was diagnosed with MND in June 2016. Initially it was thought that I might have a couple of good years up my sleeve. This didn’t happen.
"I hope with all my heart that with the work being done to bring more awareness of MND, and therefore more funding for the research, that generations in the future won’t be afflicted by this disease.
"By the way," he ended, "I’ve donated my brain for research; I think it is in fairly good nick."
You can help fight MND by supporting the Cure for MND Foundation at curemnd.org.au
Kristen Hilton is the Victorian Equal Opportunity and Human Rights Commissioner. @kristenahilton
This piece was originally published in the Herald Sun on Monday 10 May 2017