It’s not that I fear death; I fear it as little as to drink a cup of tea.
In one of my early roles as a newly minted Australian helper, I worked as a counsellor with people in law enforcement. On my first day in the job, I set the room up with lights garnered from the store of unused furnishings on the witness-protection floor and waited to see who might come through the door. The biggest part of my job turned out to be talking about such things as: it isn’t dangerous to cry; and accepting death doesn’t mean being happy about it. The people I spoke to were generally receptive to these ideas, they valued knowledge highly, and they knew that when it came to death, there was quite a bit they didn’t know. But it was hard for them to put this learning into practice, because when they took these ideas outside the counselling room, almost no-one else believed in them.
You could say a lot has changed since my days working under those borrowed lights. Australia now has death cafés, Death Over Dinner events, more open reporting of suicide, a host of bereavement training and services, countless articles on how to support the grieving and a raging debate over euthanasia. This country has produced some of the most innovative thinkers about death, including psychotherapist Michael White and bicultural griefologist Rosemary Wanganeen, people who interrogated the prevailing cultural ideas of bereavement, widening our most common ways of storying death to include history and current political and social structures in ways that are unique to our cultural heritage and that have helped people better to understand dying and grieving for the dead.
There’s a lot more talk about death in this country now, but illusions about time and the simplification of memory, misplaced heroism, desiccated ideas of privacy and the false ownership of the dead still pervade the experience and understanding of death and constrain the possibility of dying differently. I continue to hear a kind of aching ignorance from those who are dying or left behind by death. Often it’s not so much sadness they’re struggling with as a lack of skill and an absence of knowledge, which transform the pain of death into a kind of unbearable, bumbling suffering that knocks against itself and other people with a kind of blunted, bruising blindness.
To put it harshly, many smart people still tell me stupid things. Thoughtful people, keen observers, reimagine and rewrite their death tales with the dullest of pencils. Wide and deep stories become thin and repetitive. People reposition themselves in a malleable universe, where death can be explained by unfairness, personal failing, the evil doings of others or by fate, whatever that is. Even their regrets can seem misplaced. They regret things they could not or would not have done, or they act as if humans are like cakes, and that their failure to rise again can be traced back to a single missing ingredient. And each time they tell their stories, more details are erased from the plot. Our new and resurrected ideas about death and dying just aren’t trickling down. And when they do, the soil they fall on is often too dry to absorb them. If we’re really going to get better at death in the dominating culture, it’s going to take more than conversation. How we die is an enculturated process, and if you want to change your culture, you have to be willing to examine all the threads that hold it together, especially in the places where they’re woven right into the fabric of your being.
In the blinding light of an airport lounge in winter, the snappy bright cold held outside by heavy glass, I sit with my best friend in red chairs that are somehow very clean and terribly dirty at the same time. I’m on my way to Australia from Canada, at a time when phone calls are expensive and the internet is a box somewhere in America, so we’re feeling as if it’s the end of the world. And it was. We’ve never lived in the same city again. Her Montreal is still, despite our techno connections, so far away. We’re friends, but everything that was daily in our lives is gone, and every time I see her body now, so much time has passed that it’s a new body, and I need to get to know it all over again.
On that day long ago, because of the cold and the ice on the wings of the plane I’m meant to catch, my flight is delayed, and we’re buoyed by the idea of having more time. We wander; look at things, people, anything but at each other. I’m numb, just waiting for the plane to be ready, for the real end to come. In the absence of knowing what to do, how to leave each other, we go blank.
When I talk to people who are dying, they all seem to want more time, but like my friend and I wandering aimlessly in an airport limbo, when they get more time, through treatment or mysterious luck, they often don’t know what to do with it. And when you don’t, you either fake it or you waste it. On that day I understood that I knew nothing about how to leave someone. I wish I had been brave enough to spend that extra time crying noisily in those red chairs, lamenting our separation. But it didn’t even cross my mind as a thing to do. Outside the cinema I’d never seen a display like that in my life.
Owning the dead
Helen Garner has written two books about murder, and when I contacted her to talk about death and dying and how people have responded to these books, she said yes. She’s one of very few people I know with the willingness and stamina to talk about death at length and in great detail and I treasure our conversations. Sitting in a café recently, we summarised her homegrown critics’ main beefs about her death works: she’s in the story too much; she’s a ghoul who pries into other people’s pain; she has too much sympathy for weak or violent men. At the soft centre of all of these criticisms is the idea that death is private, and that the more shameful, violent or shocking the death, the more private it should be. At their heart, these thoughts defend our false disconnection from violence. Because of course vulnerable people can do terrible things. People we know and love can do terrible things. If we can’t understand this, if we can’t bear making a connection to our own devastating cowardice and murderous rage, then there is no hope of understanding it, no hope of turning that ship around.
Unlike our Anglo-American cousins who’ve made an industry out of the detailed exposure and examination of violent death, in the Anglo bracket of this country we have been prudish, lobbing fierce criticism particularly at women who speak about the realities of death: Helen Garner for being morbid; Rosie Batty for using her son’s death for some kind of personal glory; Celeste Liddle for Counting Dead Aboriginal Women; and death midwives for urging us to speak about the unspeakable, to name just a few.
This severed privatisation of death has had terrible consequences for those who work most closely with it. While our police, firefighter and paramedic associations are all being urged to do more to support their members to bear better their responses to witnessing death, they’re being asked to do it alone, to talk among themselves about it. The plan seems to be to hive off the horrible and to leave them with it, albeit with more resources. This makes them like night men, who emptied pan toilets under the cover of darkness, protecting everyone from the shameful knowledge that we all shit. Why should emergency service workers do all the bearing of bad news? Shouldn’t we all be hearing these things, taking them to heart, being hurt by them?
A fight to the death
The euthanasia debate often feels to me like some kind of competitive marketing campaign: grandiose, peopled by threatened egos and written with plots so overblown they’d barely make it to daytime television. Some-where in there are the dying, now divided into sharply opposing camps. There they are in one corner, enduring pain beyond imagination with no legal end to their suffering, and in the other, seized by a courageous will to live, sucking every drop of life out of their final hours. The stories themselves are not lies, the doctors are telling a truth, the families and advocates of those who are requesting the right to die are recounting their experience of suffering to the best of their abilities. And it’s a fact that people in similar circumstances can die in agony long past the ends of their tethers while others with similar pains struggle to hang on to every shred of excruciating consciousness. But these polarised stories mask the fact that the bodily pain of death is not always where the heat of suffering lies. The isolated loneliness, boredom, regret, strained relationships, silence and lovelessness often tear people open when they’re dying.
All this simplified talk about the right to die and the will to live takes the conversation away from the everyday awfulness of the overhead fluorescent lights that shine on our lives when we’re dying, exposing all our tender failings, all of our bruises and scars. Of course no-one should have to endure unbearable pain, but how can we know what’s going to be bearable? In the absence of guidance about how to die, how can we know what’s going to hurt the most?
When I was giving birth to my daughter in Sydney’s inner west, I had a plan, a trusted guide and absolutely no experience. I’d seen people die, but I’d never witnessed a single birth. So I did what many truly ignorant people do; I made a plan. My plan involved staying at home, a birthing pool, my equally inexperienced partner, friends and Frances the midwife. At the hospital after 30 hours, exhausted and overwhelmed, my daughter facing the wrong way, the contractions just one long unstoppable wave, a quiet anaesthetist put a needle in my spine and took the pain away from one side of my body.
The other side mysteriously did not respond, but even a one-sided respite was welcome. When he came back, to top up his medicine, Frances spoke softly into my ear. She said, if he gives you more, you might not be able to push, you might find that they need to use forceps, or surgery. She was reminding me of my plan. I was then able to honour the decisions I’d made when I was in a state to make decisions. Under current legislation, Frances would be an outlaw, our position together invidious, the choices for all of us moot. Without a midwife, all my plans would have been for nothing. I was in no state to uphold them. Who in labour ever is?
In an attempt to grapple with the reality of death, some of us make plans for dying. They’re not really so different from the hopeful documents of expectant mothers. Do you want to be resuscitated? How about pain medication that may make you incapable of any communication and hasten your death? What do you want to have happen to your body after you die? You can tick the boxes that best match your wishes. But in the absence of guides, you’re left holding onto your plans in moments of frightening and completely uncharted experience, or the people you’re leaving behind are asked to uphold your wishes. But your death is happening to them too. They’re the ones who will have to live with how you died. How can you ask them to be so disconnected, so courageous, all alone?
Obstacles to mourning
A good friend’s mother is dying, and we’re talking about how and when she can make time to be with her. Not now, she says, it’s term time and no-one else can teach my classes. We establish that it’s a particular later time she’s waiting for: the period of unscheduled needs, after the regular and debilitating treatments.
The average bereavement leave offered in Australia is three days, and that’s if you’re a permanent employee. It’s an offering, not an entitlement, and if you’re casual, time off has to be balanced against all your other needs, loss of money pitted against the gain of time. In the most influential culture of this country, death and dying are seen as a kind of speed hump, an obstacle in the way of our normal lives. You have to slow down, but you don’t want to slow down too much, because it’s the road that’s important, and the road goes on forever.
It’s overwhelmingly women who manage the pauses in this illusory linear flow of existence: the births, illnesses, deaths and misadventures. It takes many women working at great cost to maintain the illusion that death can fit neatly into this bizarre idea of the reality of living. The notion that we can transform our relationship with death by having more conversations will be a familiar diversion to anyone who’s tried to create change in any oppressive structure.
I try to imagine what a change in our relationship with death might look like for my friend—if dying were allowed more space than a speed hump or a particularly bad flu. I see her working in a place where she is a whole person, not broken into small parts, each privately loyal to different people and structures. It’s almost impossible to imagine without the help of history and science fiction.
I see my friend talking about her mother’s coming death to everyone who asks about her life and about how she is, because they know that death is not contagious and that there are no places that death does not touch. In their responses, no-one is hoping for her mother to live, against all good sense, or imagining that her death is more bearable because she’s past a certain age. I picture her leaving work, going to her mother, her workmates going with her, feeding her, farewelling her mother, cleaning the house and crying together about their own mothers, their own deaths. And things are allowed to stop, because they really do stop, and no-one feels the need to pretend otherwise.
Years ago my lover’s father committed suicide. He suffered from a slow-moving, progressive and absolutely terminal illness, and he told her when she was very young that he would end his life before his failure to control his own movements began, because he feared not having a choice to die once he could no longer care for himself.
When he did kill himself, he wrote a note. He told her not just how much he loved her, but what things in particular he loved about her. He didn’t speak of his state of mind or his suffering, just that it was time for him to go. He hanged himself in the bush after leaving a note for the ranger to warn him and to let him know where he was so he wouldn’t be found in a more terrible state than necessary, or by someone too young and inexperienced to digest it.
The thing that pierced right through me when she told me all this, that knocked over all my ‘knowledge’ about death and about suicide in particular, was how loved she felt by the way he had chosen to die. ‘He was thinking of me,’ she said, ‘he was thinking of how it would be for me when he died.’
People have worried with me about how it will be for them when they die. They’re understandably thinking about themselves. Isn’t that the way of things when you’re afraid? I wish I could introduce them to the people left behind. I think how you die is a very important thing. It’s what you really leave behind. The way you die echoes from generation to generation and tells us everything we need to know about your life, about who you were. Your death is not private, it’s not simple and it doesn’t really belong to you. In this country, new and older dismantled ways of dying are emerging. If we can make room for them, soften the ground for them, they will also change the way we live.
Zoë Krupka is a writer and feminist psychotherapist with a professional interest in relational ethics. She blogs at zoekrupka.com.