Nia Sims has faced up to her death many times in the past 20 years.
The Albion woman has been living with a severe form of the rare autoimmune disease scleroderma since she was 23.
Confronting her own mortality has seen her become an advocate for the Voluntary Assisted Dying bill currently before the Victorian Parliament.
Ms Sims, 43, was initially told it was likely she would die within five years of her diagnosis, with scleroderma affecting the body’s connective tissues and often called “the disease that turns you to stone”.
Despite bucking that trend, her journey has been painful and uncertain at times.
“There have been times when the disease has flared that my doctors and I have been unsure if each new medicine will work and I could be on my way out,” she said. “Sometimes it takes months for the new medicines to start working – so I continue to get worse over months while waiting … that’s a time of horrible, fearful, anxiety-ridden uncertainty.”
Despite her own struggles, the main reason Ms Sims is advocating for the bill to be passed into law comes from the pain she still feels from watching her father, Greg, suffer in the latter stages of brain cancer 12 years ago.
The trauma Ms Sims and her family suffered is detailed in a short 18+ film at stopthehorror.com. Deliberately confrontational, the film aims to show how stress and pain can be avoided with the proposed law.
“The horrific experience that was his death in the hospital is what has motivated me to lobby for this law, in addition to my own desire for peace of mind around my own death,” Ms Sims said.
“I was very acutely unwell at the time of dad’s death, but I pushed through to be there for him.
“When you’re sick, you’re very busy being sick – and that’s a big problem. The sick find it hard to be advocates for themselves because they’re too busy being out of breath trying to have a shower or doing any day-to-day things.”
The state government says the proposed law is the strictest and most conservative of its kind in the world, with numerous stringent guidelines that must be met before a patient becomes eligible.
Ms Sims was in the public gallery when the bill was tabled in Parliament on September 20.
“It was spine-tingling – a profound moment in Victorian history,” she said.
“To see Health Minister Jill Hennessy read a document that literally holds the quality of my life and my death … in her hands was a moving experience.”
The bill will now be debated before a conscience vote by the end of the year.
Ms Sims said it was important politicians heard the will of the people before the vote.
“It’s important for everyone to tell their local MPs how they would like them to vote,” she said. “The ways I am likely to die are either
by lung failure or failure of my gut, so it’s
either gasping for air or starvation and dehydration.
“I’m fearful of that death every day … the passing of this law would bring me a sense of control every day for the rest of my life, no matter how long that might be.”
