67-year-old Mark Butler wanted to be the first person to use voluntary assisted dying in NSW. The last state to debate and pass a VAD law, the choice became an option in November 2023, almost four-and-half years after Victoria 's landmark legislation.
An early advocate for choice at the end of life, Mark watched as more and more states passed their own laws and wondered whether he would live long enough to be afforded the same right.
Before he was diagnosed, Mark worked as a heritage architect and was studying his masters. He was fit, healthy and had a busy social life.
"I was swimming three times a week, doing yoga twice a week, doing Pilates twice a week," he said.
"I miss swimming so much … it clears the mind."
Now confined to a chair and dependent on assistance for all his basic needs, Mark rarely left his small unit in Asfield in Sydney's inner west.
"With each day, I watch every single pleasure and interest of mine and any shred of dignity eroded.
"People describe this as a bastard disease and I wholeheartedly agree. Utterly heartless and wretched, in fact."
Terrified of what the final satges of MND may look like, and especially fearful of choking on food as the muscles in his throat and chest steadily weakened, Mark applied for VAD the day it became available in NSW.
Even if he was not quite ready to die, he wanted the reassurance of having the VAD substance at hand should his condition deteriorate.
However, he immediately struck obstacles. To qualify for VAD in NSW requires a prognosis to death of 12 months or less, confirmed by two indepednet doctora. Unsure about Mark's trajectory, his coordinating doctor sought a second opinion from Mark's palliative care physician.
The doctor refused to give it. Instead he referred Mark to a speech pathologist and physiotherapist.
"I find myself hanging in some sort of limbo, waiting to die. This disease is consuming tissue and remnant muscle, almost daily, and devouring parts of my mind and memory simultaneously.
"My medical specialists see my longevity of four years as something to relish. I see it as nothing but an absolute chore. There is nothing good about prolonged living with this wretched, mongrel, useless disease."
