Paul Menner is a knockabout bloke who laughs through Friday nights at the Goolwa RSL while holding a cold XXXX, and his best friend, his beautiful wife Gail, shares in the fun.
Next day he’s at the Goolwa-Port Elliot footy club cheering on the lads. They’re all his extended family, and like so many wonderful friends around the town and from afar they gathered at the club on a recent Saturday night to offer them some amazing support, especially Gail.
It was Tuesday, May 19 when Gail was told she had Motor Neurone Disease, and with Paul cried all the way home from Flinders Medical Centre. They cried through the next two days, and that night just when they thought there could be no more tears they cried when they saw football great Neale Daniher tell the world on the Channel Nine Footy Show about his confrontation with this same dreadful incurable disease.
MND is cruel, to say the least. The nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die.
Yet, among the groundswell of emotion, indeed love in a fundraising night for her and the Motor Neurone Disease Association SA, Gail, who was struggling to talk and breathe, said: “I look at all this and I can’t help but think that it is bigger than me. This is about the association and all the other people who have this horrible thing.”
Nearly 150 supporters gathered at the Goolowa clubrooms wearing blue to symbolise the MND, which Neale has labelled “The Beast”.
And Gail had a message for Neale. “I’m not going to feel sorry for him when my Richmond beats his beloved Melbourne (she laughs).”
You hear Paul’s distinctive laughter too, and you feel things are normal, but of course they’re not. It’s just that Gail refuses to loose sight of the fact there are those worse off than she feels right now.
Paul asked for this story to be written because, like Neale also says, it’s all bigger than one person, and it goes beyond the inconceivable measures of personal pain watching someone go through this ordeal.
There is a touch of irony that it was a year ago that Paul, being the character he is, did the ice bucket over the head routine in the RSL to raise funds for the MND Association, and here he was surrounded by people there for Gail. Oh, it was a fun night.
“Look at ’em all,” Paul said at the Goolwa club. “These magnificent people need to applaud themselves. Okay, they’re thinking of us, but they’ve also donated to the MND appeal. I think that is something special.”
The support was fitting really, with this inseparable duo supporting the RSL and the club so much, and Paul being the RSL club manager and Gail previously president of the women’s auxiliary for 10 years.
Gail said there had been a lot of crying within the family, including with their sons Benjamin, David and Nicholas and five beautiful grandkids with another due in December. “I will be there for the sixth,” she insists.
“But you can’t cry forever. You have to take what you have got; you can’t dwell. There is disability all around the world; there are some horrible things out there.
“We have caring people like Pamela Bartlett from the association at 302 South Road, Hilton – we know the address well – talking us through everything, and a wonderful doctor. It will be what it is.
“My voice is the worst thing, but because I have this app on an iPad from the association I can still nag Paul (she laughs again).” And Paul responds: “Too right she does; she turns the bloody thing up loud too.”
The MND Association SA is a not-for-profit organisation that cares for people who have MND and provides information and advice, and importantly loans some equipment. There is no money from the government; the association needs to raise every cent itself to buy things like iPads for people like Gail to communicate when the disease progresses painfully further.
Pamela, who is a client support advisor and part of an amazing team, and seems to have Compassion and Respect as her middle names, said there were about 1400 people with MND in Australia, including fewer than 150 in SA. “The work and support by Neale Daniher, which captured a lot of attention across Australia, and the film on Stephen Hawkin has brought the profile of this disease forward,” Pamela said.
By chance, 19 days after being told her terrible news Gail had already planned to go to Ireland with her son Nicholas for five weeks as part of her 60th birthday present (last February 20). Her specialist told her to still go, and during their treasured experience every time Nicholas asked whether she wanted to see or do something Gail responded “why not?”
“It’s my catch-cry now,” Gail said. “Why not live for the day?”
Of course, there are some even tougher times ahead. Gail said the hardest part will be leaving the family, but reminds us that we all face this at some stage. Right now she says it’s all about standing up to this thing.
Gail said many wonderful friends had visited her and cried. “I told them to cry when I die; live for today,” she said. “I told them the association was bigger than me.”
As Paul said, Gail is “as tough as.” It was then we discovered there was a tear left in this ‘ol crusty mate after all when he added: “For now, nothing is going to change… we’ll just hang in there.
“We’ve got the support from our family and friends. This place has been incredible, but I am not really surprised. Goolwa is a very personal place; the RSL is personal. The footy club we just love.
“You get hit with something like this and everyone here and great people like Pam and those at the association across Australia are there to pick you up again. The hard thing is remembering eventually you can’t beat this thing, but as Gail says, there’s someone worse off. You’ve got to love her, don’t you? She’s a beauty.”
The MND Association SA desperately needs your support to purchase equipment to help people like Gail. To donate call 8234 8448 or follow links on: www.mndasa.com.au