It’s late on Thursday afternoon in Australia but in the Swiss city of Basel, Troy Thornton is barely awake on what will be the last full day of his life.
The career firefighter from Victoria is going to spend it with a man he just met, Australia’s so-called Dr Death, Philip Nitschke, who has led a years-long campaign for assisted dying laws in Australia.
They spend his last day taking in the sweeping expanse of the Rhine River that snakes through the northwest medieval city, before heading to the snow-covered peaks of the Alps.
In the evening, Troy and his wife Christine sit down for a last supper with a life-long friend who he’s entrusted to escort her safely home to their two teenage children.
By then his ashes will be in an urn.
The 54-year-old hasn’t slept well since he arrived in Switzerland less than a week ago, waiting for his date with death late on Friday, Australian time.
But when he does sleep his son Jack, 17, and daughter Laura, 14, who he farewelled in Australia on Sunday, are there in his dreams.
“The hardest thing I’ve ever had to do is say goodbye to them. It just destroyed me,” he told AAP, his voice weary from an incurable disease, overlaid with stress, emotional trauma and jet lag.
He was still dealing with the grief of leaving them behind with their grandparents, on a one-way trip to the same euthanasia clinic where Australian scientist David Goodall ended his life last year.
For Goodall, at the age of 104, it was all about choice. He was tired, he said, of being old. He simply did not want to go on, having outlived so many of his friends and family members. He was choosing to die on his terms.
And so it was for Troy when he made his own appointment with death, because for him, the alternative was unfathomable.
He admitted to a strange mix of gratitude, sadness and an inevitable fear about presenting his arm to Swiss doctors to administer the lethal injection.
But there’s no less fear associated with the alternative: his choice, dignity and freedom slipping away as his disease, multiple system atrophy, ultimately reduces him to a “vegetable”.
With no treatments for his disease, let alone a cure, the 54-year-old didn’t see his decision to end his life as brave, rather, as pragmatism.
“It’s so surreal and sometimes I do think what the hell am I doing here? Why did I make this decision? But then you see what you’ve got and it’s not going away. I’m lucky to be here because the alternative is pretty ugly.”
Troy ended up in Switzerland after realising he would not meet the criteria for Victoria’s voluntary assisted dying laws, which take full effect from the middle of this year.
He applauded those laws, even though they hadn’t been of any help to him.
He could not find two doctors who would say, with certainty, that his neurodegenerative disease would kill him within 12 months, a requirement of the Victorian laws.
“Doctors have always told me that you don’t die of it, you die with it. You can live for quite a few years, but severely disabled I might add. You end up being a vegetable.
“After a while it attacks different systems, breathing, swallowing. I’d end up drowning in my own mucous, that’s what happens.”
When Troy spoke to AAP he had about 24 hours left to live, give or take, but he chose to spend one of those hours explaining why Victoria’s laws must be the start of the conversation about euthanasia in Australia and not the end.
He said the danger is people will think the issue has been resolved, “but what the guy in the street doesn’t understand is that those laws don’t help people like me who are also suffering. These laws need to evolve.
“The focus on being terminal is wrong. It’s about the right to choose how you die, no matter how old you are, no matter what sickness, or non-sickness you’ve got. If you are of sound mind – and that’s important – you should be able to choose.”
Troy died late on Friday, Australian time, with Christine holding his hand. He had said “it would just be perfect” if his children, and all of his family and friends could be with him too.
“My friend’s dad, he was 85, died recently. He had his whole family there. They were watching footy and he died with them all around him. That’s really nice, that’s how you want to go out.
“But I am lucky I’ve got my wife here. And I’m fortunate I have the means to do this. There are so many people that die a pretty bad death because they don’t have the means to go to Switzerland.”
In the four years after Troy was diagnosed, he and his family had a lot of time to come to terms with his planned death.
“There’s been a lot of grieving already. We’ve prepared, my wife and children they know what’s coming,” he said.
He added that it might sound like “a bit of a wank” but believes he’s also worked out the meaning of life, which comes down to two things.
“The first one’s a no-brainer. We’re here to propagate, to evolve the species, to reproduce. The second one is that you’re here to inspire.
“Fundamentally, those two things underpin relationships and life is about people.”
With several strangers asking him if they could join him on Friday, Troy said he told them, “the more the merrier”.
“Just to be surrounded by human beings when you take your last breath, it’s a nice thought.”
Footnote: Troy died by lethal injection late on Friday, Australian time.