Peter McGovern was diagnosed with MND in 2024, but through sharing his story he has found hope and acceptance. Photo: Keeli Dyson.
Hope and happiness are terms not often associated with living with a terminal illness, but for Peter McGovern, a devastating diagnosis of motor neurone disease has created a perspective and understanding on life that’s worth sharing.
After almost a decade leading Edmund Rice College, a school where he had grown up himself, the former principal was ready to enjoy a retirement of golfing, holidays and many more memories.
He had always lived an active lifestyle, playing sport and taking long walks daily, but in early 2024 he started to notice his foot dragging.
“I couldn’t stand on my tiptoes on my left foot, I had feeling but I had no muscular strength,” Peter said. “So my foot was thudding onto the ground a bit.
“We thought it was something muscular and when the physio did some tests he said he hadn’t seen much like it.”
What followed was months of specialist appointments where causes were ruled out and no diagnoses were made.
Finally in September more neurological tests revealed two potential outcomes.
“[The neurologist] sat me down and told me it was 50/50, it was either MND or motor neuropathy, which you can live a long life with – it tends to affect just the arms and legs where MND affects the whole trunk as well as the arms and the legs.
“Because MND leads to your lungs, basically the muscles stop working and that’s what normally gets you, whereas the other one they can pretty much keep you functioning pretty normally.”
Less than two months later it was confirmed he had MND.
“When you find these things out, your whole world changes,” he said.
“It was sobering, it was heart-wrenching, it was difficult and incredibly frustrating.
“And you go through the normal stages of grief – denial, frustration, anger.”
At just 66 years old, with three kids, one grandchild and another on the way, Peter decided to write the personal story of his life to share with his family and connect to his grandchildren in the future.
He wrote a draft as a personal biography initially meant for only his closest loved ones, but after being connected with the University of Wollongong’s MND researchers he was inspired to expand the reach.
“I was just blown away, it really gave me hope,” Peter said. “Because one kilometre away from where I lived they were doing this incredible science.
“They were just so passionate.
“I had this idea about changing the register and the context a bit and maybe writing for beyond the family.”
With the support of his family to share some of his rawest moments with the world, Peter shifted the story to connect with the broader community.
And through writing about one of the hardest times, he found a hope.
“I go through my medical journey and psychological, spiritual, my whole journey of life,” Peter said. “The book became incredibly important for me because it made me quite positive.
“It made me realise how fortunate I’d been in my life in terms of all those connections – growing up the relationship I had with my parents, siblings, then marrying Jacqui and the kids and I’ve got some wonderful friends.
“All that and particularly the schools and the importance of the career I chose, it brought me a positivity and an acceptance which is really important with any terminal disease; you’ve got to find a way to accept what you’ve got and in a weird sort of a way be grateful for what you’ve lived and what you have.”
He’s officially launching his book What’s Luck Got to Do With It? in collaboration with an open day at UOW’s Yerbury Lab, so the community can see first-hand the dedication and passion he experienced when meeting the researchers studying MND.
And he’s donating the proceeds of the book to the lab, with ongoing community support crucial for work to continue.
“With MND, we don’t attract a lot of government funding because we are considered a rare disease, so all of the funding that we get at Wollongong is from philanthropic donations,” Associate Research Fellow Christen Chisholm said.
“If you get diagnosed with MND, your neurologist will say to you, there just isn’t anything, there’s nothing we can give you to try and see if it works, and I think that is a very lonely diagnosis to receive.
“What we hope in supporting in the members that have received those words, we want them to know that we understand how awful and terrible it is to hear that and that they have people on their side, people who are committing their lives to trying to find something so that we can say ‘yes there is something we can try this, it’s new and it may not work but let’s give it a go’, and we’re not there yet.”
Peter is confident a cure is not far away, but when he looks forward to the time he still has to spend, it’s not medical miracles or crazy trips that fill his sights.
“A couple of close mates had a coffee when I was first diagnosed asked me, ‘What do you want to do, what’s on your bucket list?’.
“I said, ‘It’s not to climb a mountain or to see another river or to see another town, it’s nothing to do with travel – it’s actually just time with family’.
“So what do I look forward to? I look forward to going over to a library and having my grandson sit on my knee and read to him. Going over to their place every chance I get, or them coming here. Having weekends away with the kids. That’s everything.”
The MND Research Open Day and book launch will be on Friday 6 February, with tours from 1 pm. More information and booking is available through the UOW website.
