She lives in the dark with a blindfold over her eyes and headphones over her ears.
Sunlight and sound are too much for her fragile body.
A cruel genetic condition makes it impossible for her to use her voice and incredibly painful to move her limbs. She loves hugs but can’t hug back because of the agony it causes.
And her condition will only get worse.
New Zealand woman Gina, whose full name has been withheld, is in her mid 40s. She’s been suffering like this in a dark, silent room for more than a decade. The worst part: doctors don’t know exactly what’s wrong with her.
Gina has told her story for the first time to documentary makers, revealing she has nothing left to live for and just wants to die. The problem is, her government won’t let her.
‘SWAP PLACES WITH ME’
Gina has a simple message for people opposed to voluntary euthanasia: “Swap places with me.”
“I think a compassionate God would want people to have the option of a humane death,” she said.
Wendell Cooke co-directed the documentary Gina with Jeremy Macey. He said he wanted to open people’s eyes to the daily struggle for people living with terminal illnesses.
Speaking with Gina, he said he realised that she and only she should have the right to choose whether or not she goes on living.
“We didn’t go looking for the most extreme case that we could find,” Cooke told news.com.au from his home in Wellington.
“She was living with this atrocious condition. She was disempowered. It’s been really hard and continues to be. Mentally she’s all there, so basically she’s just spending a lot of time thinking.
In the documentary, Gina explains her condition. She uses a touch alphabet to communicate her message.
“I have a rare genetic disorder affected my eyes, ears, larynx and all my joints. I live in enforced darkness and almost silence as sound and light cause further damage to my eyes and ears. My muscles have wasted away. I have total voice loss.”
Cooke said he hoped the documentary would move along a debate that has stagnated in New Zealand following two failed attempts at legalisation.
“We felt that if we could just communicate this to an audience it would go right to the heart of why there needs to be a law change in New Zealand,” he said.
‘I’M NOT A HEARTLESS BASTARD’
Paul Russell is the director of HOPE, an Australian organisation against assisted suicide.
He told news.com.au he feels for Gina but worries that her case could be used to enact damaging legislation.
“It’s obviously difficult for her, she has an incredibly rare condition. I’m not a heartless bastard, I really do feel for these people (but) I can’t see a circumstance where you could enact legislation that would be free from risk for vulnerable people.”
He said the documentary was emotive but “I don’t personalise the issue at all”.
“I’ve got a son with a disability, I’ve been involved in the disability community. I question whether there’s something else that can be done for her (instead of euthanasia).”
Cooke said his film was about not simply “shrugging” and saying “the risks are too great”.
“Objections to legalising voluntary euthanasia seem to centre on the risk of the unknown, risk the that the law could be misused, or risk of the elderly feeling pressured, say by family members, to shorten their lives,” he said.
“These are absolutely valid concerns but my response to that line of argument is it’s not enough to simply shrug and say “the risks are too great” when people are already cruelly suffering under the status quo.
“We should be urging politicians to draft good laws that take these risks into account and manage them for the good of society, the same way we do with other risky endeavours such as driving a car or providing access to alcohol.”
SOME COUNTRIES MOVING, OTHERS STANDING STILL
Australia’s euthanasia laws remain the same as those in New Zealand. But this week the Victorian parliamentary inquiry into end of life choices is hearing from medical professional and palliative care providers about potential changes to Australia’s legislative framework.
Euthanasia is legal in some countries. In Germany and Switzerland it is legal for a doctor to assist in suicide in certain circumstances and in the Netherlands euthanasia was legalised in 2002.
In the US, doctors are allowed to prescribe lethal doses of medicine to terminally ill patients in five US states including Oregon, Vermont and Montana, the Guardianreports.
Gina hopes New Zealand joins that list. Asked how she wanted to die, she told Cooke her doctor would give her medicine and she would fall asleep. Then she would “die peacefully while I hold my sister’s hand”.
If you or someone you know needs help or support you can call Lifeline on 13 11 14 or visit lifeline.org.au.