The surgeries, extensive chemotherapy, and radiation that I went through back then plus the on-going hormone therapy didn’t do the trick. And so now, in my mid 50s, I’m terminally ill. It often doesn’t seem real, yet it is. But there’s so much more that I want to do – I am not ready to go!
My own story of facing an untimely death has been interwoven with that of my best-friend and housemate who, within these same four years, was diagnosed and subsequently died of lung cancer. And no, she wasn’t a smoker. As my first illness was coming to an end, her illness began and so I went from being the person who was cared-for to being the one who was the primary carer. There was a week’s difference. So the last four years have given me a unique window into the complexity of death and dying, of living and loving, and of holding on and letting go.
The NSW community is about to debate physician assisted death or voluntary euthanasia. No doubt one of the key ideas will be the notion that we ought to have a ‘free choice’ when it comes to the manner of our death. This is coupled with the different understandings that people have about what it means to die with dignity. These are vitally important conversations to have. However, it often feels to me that the voices who want physician assisted dying are given extra amplification by celebrities, and that, because they talk about dying with dignity, they somehow must be right. But the last four years of experience have confirmed for me everything that my two ethics degrees have taught me: that human dignity is so inherent that it is expressed even in extreme vulnerability and not just in the good times.
The debate worries and scares me on several levels. Fortunately we just don’t go around killing each other anymore so the notion that it’s a person’s ‘free choice’ to die just doesn’t make sense. Recognising the full scope of human dignity, we stopped capital punishment a long time ago. Now bringing in legislation that allows a group of experts to determine who can ‘legally’ die, seems a retrograde move. Intellectually, that worries me. And once the legislation has been approved, experience tells us that it is likely to grow exponentially. I can imagine a time when particularly frail and vulnerable people will succumb to the thought that it might be best for their families and for society in general for them to let go and die – they will agree to something because they think they ought to. That scares me.
I have always been an extremely private person and so the thought that my increasingly frail body will need intimate help does not thrill me. But just as I cared for and loved my friend in all her messiness and fragility, I will have to let others care for and love me in the same way. There is nothing undignified about that. So my experience of being a primary carer tells me that as I’m dying, the presence of people who have the emotional capacity to sit with me during long hours, who have the strength to continually stroke my arm, to bring me cups of water in the night, to tell me that they love me and to stay with me even if it seems that I am no longer present to them is of beyond measure. I’m sure that I will know their voices, and that I will know their touch. So as the doctors relieve my physical pain, I trust that my family and friends will abide with me so that just as I have lived, so will I die, with integrity and grace.
Julie Morgan is a lecturer in ethical leadership at Australian Catholic University.
This story was first published in the Sydney Morning Herald 18 January 2017.
