By the wee hours of Friday morning, the mood in the house was slightly delirious. My friend, colleague and registered nurse Jane Morrow and many others cried when the vote on voluntary assisted dying, 47-37, was finally declared to a packed house at 11am after a record 22 hour sitting in Victorian Parliament. It was met with a weary but fulsome round of applause from most in attendance.

My vantage point from the “accessible” section of the public gallery was one of the few perks of being, as far as I know, the only visibly seriously physically sick or disabled person to attend the sitting. I could see the entire public gallery, press gallery, and members to the right of the speaker. If I craned my neck forward, I could watch the profile of the member for Bundoora, Graham Watt MP, aka “the man in black”, Robert Clark MP and select colleagues as they filibustered through the long night, asking lengthy questions on topics covered in the debate two days prior. They did so on the basis that amendments to clauses were required. None were passed. For a Python-esque half hour or so at around 3am, the filibustering focused on the topic of the possibility of the cessation of filibustering.

Members travelled from their seats to offices, to the cafe and, as the bells rang over and over again when divisions were called, they tramped back and forth across the floor. I travelled between the accessible public gallery, the cafe, and at one point, at 6am on Friday, to an ancient red velvet couch in the library, a stunning chamber of open secrets — endless shelves of leather spines, curling wooden staircases and crystal chandelier. I napped there thanks to the generosity of House staff and indeed MPs — who moved the furniture for me — including my own local MP Natalie Suleyman.

Suleyman disappointed me with her “difficult” yet inexplicable decision not to support the bill. Her contribution to debate on Wednesday was brief and cursory, leaning on the most common opposing argument: the need for her to protect the “vulnerable” from misuse of the bill. However, she was very generous to me with her time, and I was touched when she said she’d listened very carefully to the voices of people with disabilities in her community.

Greens MP Ellen Sandell, who I had never met, tweeted afterwards, “If I had known you’d been napping in the library with a towel for a blanket I’d have offered you my office!”

But not every public political figure has been so accommodating. Former prime minister Paul Keating said in an opinion piece for The Sydney Morning Herald last week, “What matters is that under Victorian law there will be people whose lives we honour and those we believe are better off dead.”

I’ll be the judge of whether I’m better off dead, Mr Prime Minister.

Because that’s the point. Autonomy.

If I decide I’m better off dead (i.e. when I am on oxygen nasal prongs and can barely breathe), with this law in place, I will not need to resort to suicide alone, so as not to expose my family to legal prosecution. I will also have peace of mind today and every day up until I decide I am better off dead.

What matters is that there are people in public office willing to recognise the unjust, highly risky status quo. What matters is that we have an opportunity to manage the risks of properly regulated voluntary assisted-dying (VAD) within hospitals, hospices and at home, where the majority of people wish to die — at the time and in the manner of their choosing.

Lastly, Paul Keating, I never thought I would find myself debating logic with you, but here it is: palliative care is indeed, as you say, in dire need of greater funding and availability. Implementing VAD and fixing palliative care are not mutually exclusive. You appear to have missed the point that having VAD available as a choice will place an onus on providers of healthcare to offer every reasonable palliative option — before a request from a patient for VAD will be considered. If we buy the cart, we’ll need to get the horse too.

But it’s not over yet. Victoria’s upper house is yet to receive the bill. They will receive it without a single amendment. The vast majority of Victorians who support the bill need to continue public pressure to see this law enacted.

When I return to Parliament House it will be to a different chamber. I look forward, with bated breath, to wheeling my walker in through the back, accessible entrance of Spring street, Panadeine forte in my pocket, for the next leap forward.  

*Nia Sims was a registered nurse for 15 years and currently volunteers with pro-euthanasia group Go Gentle Australia. She has a rare, life-threatening illness (scleroderma). Tweets at @niarebeccasims. Email Nia here.