This time three years ago, I was sick - so sick that doctors told me that without a double lung transplant I would die.
I was born with cystic fibrosis and by the time I was 25, my lungs were operating at 12 percent capacity. Transplant was my last option before death. But having known about it my whole life, I’d come to terms with it.
While I was waiting for a set of lungs to become available (that horrible dichotomy of waiting for someone to donate precious organs of a loved one who had recently died, so I could live), I had to be constantly connected to oxygen, even using an external ventilator overnight. I would have overwhelming bursts of coughing, many times a day, that would almost always end in vomiting, and I was so weak and out of breath that I couldn't even climb a flight of stairs. I was dying.
However, I had hope. Hope that I would get the life saving call that there were lungs available for me and luckily for me, I got that call. But for many people I know, they never had that option, that little glimmer of hope to hold onto. They didn’t qualify for an organ transplant or they got too sick to survive one. And so they passed away. I wish they were here so I could ask them their opinion on the end of life choice bill.
Recovery from my double lung transplant wasn’t easy. I’m sure it never is. But my doctors told me afterwards that I had every complication under the sun other than death. I was finally discharged from the Intensive Care Unit after eight weeks and went to live in Hearty Towers, a rehab centre to recover from the battle my body had been through.
It was immediately apparent that my kidneys had gone ‘on holiday’ and stopped working while I was in a coma, and I started daily dialysis in the hope they would be kickstarted into working again. Alas, this wasn’t the case and I was placed on the waitlist for a kidney transplant. My mother, who had just had two of her children endure double transplants (my brother got the call for his the very day I was discharged) immediately offered her kidney, but because she wasn’t a perfect match, we had to wait for 18 months when my mum exchanged her kidney with another couple in Sydney and I received one back. Thankfully my body recovered in a more ‘by the book’ manner this time.
I have now received two life saving organ transplants and know that the likelihood of ever receiving a third is little to none. When you have a progressive, chronic health condition or have had organ transplants, your mortality is something you face head on every single day.
Unless I’m hit by a car or die in some other unexpected, sudden way, I know that organ rejection and organ failure will be the cause of my death many years ahead of most of my friends.
I’ve never been in the position of unbearable suffering without carrying the hope of an organ transplant. But the likelihood of this happening to me and to someone I love is a real possibility. I imagine it would bring a lot of comfort knowing there is a way to put an end to and to lessen the days of suffering to something that is undeniable anyway.
This bill won’t lead to more deaths, the people who qualify are dying and will be gone within six months with or without this bill.
But what it will do is to bring control to a usually uncontrollable situation, and allow people who are unbearably suffering (that is unmanaged by palliative care), who are going to die in the next six months, the control of choosing and dying with dignity.
I think this is all people are asking for, the choice.
I am not sitting here saying that if this was available to me one day, I would take it, because I don’t think I would. But I’m also not living the narrative that would make me qualify right now. What I am saying is that as a nation, we should allow the people who do meet all of the criteria and who do want to enact this choice that right. We should not take that decision away from them.
Let the people who are experiencing uncontrollable suffering and who meet all the other criteria have the choice to end their life on their own terms.
The 2020 NZ election, including the referendums for the end of life choice and cannabis legalisation and control bills, is on Saturday October 17, with advanced voting open now. Check that you're registered here, and find out where to vote here.
