Dying Read online

  I don’t mean to give the impression that my companions are all hell-bent on doing themselves in at the first opportunity. In my experience, our meeting to discuss suicide does not imply that we’re all firmly committed to ending our own lives. It is more that we wish to contemplate what it would be like if that option was available to us within the same type of regulatory framework that exists in countries where assisted dying is legal. But this is not to say that anyone I’ve talked to about choosing to end one’s own life takes the matter lightly. We talk about this in the car driving home from our coffee-and-chat meeting. Even if they had the means, Andrew and Colin doubt they could ever go through with it.

  ‘It’s too selfish,’ says Andrew, and I agree, thinking of the lonely hotel room and the traumatised housemaid. ‘It’s like you’re just saying “fuck you” to all your family and friends.’

  Which is why my drug remains unused, because of some moral qualm I share with Andrew about the harm one can inadvertently do to others, by going rogue and acting alone.

  It surprises me that I have any qualms at all, since I have never thought of myself as a person of particularly high moral standards, and I have no formal religious background on which to hang a moral framework. And yet one cannot face death without reflecting on questions of religious faith, or the lack of it, and on matters of morality, or its absence. For instance, I wonder whether doctors here are discouraged from talking about death with their patients by the strictly scientific and secular nature of the way our medicine is taught and practised. It could be that other, older medical traditions might understand and embrace grief and loss better than we do. And I wonder about the morality of the government subsidising expensive experimental cancer drugs, when other worthy areas of research go begging. As an example, the last melanoma drug I took, between 2014 and 2015, was priced at $8500 a dose, to be administered every three weeks, for an indefinite period. I was the beneficiary of a free compassionate release of the drug, but it was very soon listed on the Pharmaceutical Benefits Scheme and attracted government subsidy, despite its limited efficacy. Lastly, I question the religious motive driving opposition to assisted dying for terminally ill patients such as myself. Could it be that we, whether or not we have religious beliefs, are being obstructed in our desire to die well by people who believe that God frowns on individual choice in the manner of dying? Or worse still, that God intends us to suffer? I don’t know the answers to any of these questions, but I think they’re worth debating.

  So many people ask about your religious beliefs when you’re dying. I remember my general practitioner asking if I was religious, after I told him I was running out of treatment options. He had just written me a referral to a palliative care unit, which happened to be based at a Catholic hospital.

  ‘Are you a church-goer?’ he said.

  ‘No.’

  ‘That’s good.’

  I asked him why and he told me that in his experience people with religious beliefs have a harder time dying than non-believers like me.

  ‘I can’t be certain why this is,’ he said, ‘but it probably has to with attitudes to pain, and whether a person believes it serves a purpose.’

  I told him that I was up for any and all forms of pain relief. ‘Or better still, just shoot me.’

  ‘I’ll make a note,’ he said.

  I duly showed up for my appointment with the palliative care specialist at the Catholic hospital. I wasn’t predisposed to like the hospital after what my family doctor had said. And it didn’t help that my mother’s nursing home, also a Catholic institution, happened to be part of the same complex. So some of the despair I’d always felt visiting my mother shadowed me as I made my way up to the consulting rooms on the fifth floor. As soon as the lift doors opened there was the same smell as the nursing home next door, stale urine masked with something artificially floral, the two scents fusing into a cloying fug. A corridor led me past the chapel, the entrance to which was festooned with sombre paintings and photographs of deceased nuns. Naturally enough, there were crosses everywhere, and images of Christ, intended to provide comfort to the faithful. But the iconography put me off balance, as if I was about to sit a test for which I’d done no preparation.

  My meeting with the doctor was less reassuring than I’d hoped, even though he was softly spoken and sympathetic enough. Sitting in on the meeting was an older woman, a nurse, who, like the doctor, rarely smiled. If this had been a school I was assessing, to see if it was suitable for my children, I would have decided against it instantly, but I was going through a far more bizarre exercise, trying to form a judgment about the place where I might soon have to die, and finding it disappointing, even frightening. I thought of my drug. If it came down to a choice between dying in this place, and dying by my own hand, I knew which I’d prefer. It was only common sense.

  Thankfully I have since found a palliative care specialist I like, and he has referred me to a home-nursing service run by Buddhists. The nurses aren’t Buddhists but the organisation was established by, and is supported by, monks and nuns who have trained in Tibetan Buddhism. I have had a couple of visits from one of the nuns, not formal counselling sessions, but conversations about how I’m dealing with my situation. The question of religion has, of course, come up in these chats, but mainly because I’m curious to hear from the nun how she came by her faith. I gather it was a gradual process of realising what was right for her, and of studying and meditating for years before she was allowed to commence her formal training. What I am most curious to know is how she views death. I have already told her that I don’t believe in an afterlife, but she begs to differ.

  She describes to me how the body closes down at the end, leaving nothing behind but an essential spirit. Sometime after the body breathes its last, the spirit is released into the ether.

  ‘I’ve been there,’ she tells me. ‘I’ve seen it over and over again.’

  ‘What happens next?’ I ask.

  ‘The spirit searches for its next physical embodiment.’

  ‘Why does it do that?’

  ‘Desire.’

  I know enough about Buddhism to understand that desire is seen as a curse, and when the nun starts to describe the endless cycle of reincarnation that is the fate of the average soul, I can see why one might want to be rid of it. That is not the part of her story that interests me, however. It is her proposition that our essence is perceptible. She has seen a lot of people die. If she says she has witnessed the body give up the ghost, then who am I, a complete novice in the field, to argue? And if she’s right, I want to know whether it makes a difference how we die—fast or slow, violently or peacefully, by accident or by our own hand?

  ‘What do you think of assisted dying?’ I ask.

  ‘I’m against it,’ she says. I had a feeling she might be. I have yet to come across anyone involved in palliative care who isn’t against it. But I like the nun, so I am not about to argue with her. I like how serene she is, and how she looks directly at me when she speaks. I have even decided to invite her to say a prayer at my funeral, one she has picked out from The Tibetan Book of Living and Dying. It strikes me that this might provide an element of ritual to the occasion that might otherwise be missing.

  For this is one of the most lamentable consequences of our reluctance to talk about death. We have lost our common rituals and our common language for dying, and must either improvise, or fall back on traditions about which we feel deeply ambivalent. I am talking especially about people like me, who have no religious faith. For us it seems that dying exposes the limitations of secularism like nothing else. I felt this most acutely when I turned to psychology for some advice. My family doctor had mentioned that I was eligible to receive free psychological help from the Cancer Council if I needed it.

  ‘Six hour-long sessions, with more available if required.’

  ‘Why not?’ I said.

  He brought up a referral form on his computer.

  ‘We just have to decide what to c
all your problem,’ he said.

  ‘Dying,’ I said.

  ‘Insufficient.’

  He silently scanned the list of problems for which help was available.

  ‘Adjustment disorder.’

  I laughed. ‘You’re making that up,’ I said.

  He turned his computer screen so I could see for myself.

  I sat with the psychologist in a windowless meeting room furnished with brightly coloured lounge chairs. A box of tissues was placed handily on a side table, along with a long glass of chilled water. The psychologist looked to be in her early thirties, pretty, neatly dressed. She took notes as I told her the history of my disease up to now. She asked a few questions about my home life, about my husband and children, about my daily routine. She asked if I was sleeping, eating, exercising, whether I had any fears.

  ‘Of course,’ I said. ‘I’m frightened of dying.’

  ‘That’s perfectly normal. How do you deal with your fears?’

  ‘I try to think about other things. I read, I watch television, I see friends.’

  ‘Have you ever heard of mindfulness?’

  I had heard of mindfulness. A counsellor visited me in hospital after my brain surgery. She took me through a few of the basic exercises: how to breathe, how to listen to the sounds around me, how to observe my thoughts as they passed.

  ‘I use it sometimes,’ I said.

  ‘It’s good,’ she said, ‘to set aside time every day, to just enjoy the small things, the taste of an apple, the play of sunlight on the water, the smell of the rain.’

  ‘I know,’ I said, feeling a sudden urge to leave the room.

  This was not what I’d come here to listen to. Surely this highly trained bright spark had something more up her professional sleeve than basic relaxation tips I could have picked up online any day of the week. I’ve read that the profession of psychologist is one of the forty or so predicted to disappear in the near future, along with bus driver and hotel receptionist. The research says that people are now more forthcoming about their problems when they’re communicating virtually rather than face to face. Or perhaps it is because people like me expect more of psychologists than they can possibly deliver, some superior wisdom about the mysteries of life and death. It was a good thing I wasn’t paying for my counselling, I thought, or I might have asked for my money back.

  I ran out of things to say. Obviously I wasn’t a particularly challenging patient, my adjustment disorder being mild to non-existent.

  ‘Really I’m just sad,’ I said, trying to wrap up the session. ‘About all the things I’ve lost. I could have had another good ten years. But then, as Sartre says, everybody dies too early or too late.’

  The psychologist nodded. I’m not sure she had heard of Sartre, or rated his opinion on anything. ‘Grief can accumulate,’ she said. ‘Little losses one after the other can mount up. Perhaps that’s something we can talk about next time.’ She closed her notebook to signal that my hour was up.

  ‘You can book your next appointment at reception.’

  ‘Thanks,’ I said, although I had no intention of coming back.

  The psychologist was right about one thing. Losses do mount up. Sometimes, when I’m sitting on the front verandah being mindful, I’ll be distracted by the sight of a couple out on their evening walk. They’ll be heading for the river, which isn’t far from our house. There’s a park down there that runs along the riverbank for a good three or four kilometres. I would walk with my husband along that stretch of the river every morning and evening. It was how we bookended the day. The water is never the same, sometimes calm, sometimes rough, sometimes rushing out to sea, at other times racing in. We might stop to watch a mother duck guide her ducklings to shore, or a cormorant on a fishing expedition. As the evening sky darkens, the fruit bats come streaming across in the hundreds from their rookeries on the far bank to the giant figs on this side. We don’t do that walk anymore. I’m frightened I’ll fall and break something. Nor do I ride my bike along there, another pleasure gone. With envy, I watch the passing cyclists, gliding along the way I used to, pedalling hard when they come to the hill. I even envy drivers. I had to give up driving after my brain surgery, because of the risk that I might have another seizure. How I’d love to pack the car and head off to some deserted beach for a swim. But I weigh less than my neighbour’s retriever. I’d never make it beyond the first break. And so it goes, the endless list of pleasures I can no longer enjoy. Pointless to miss them of course, as that won’t bring them back, but so much sweetness is bound to leave a terrible void when it’s gone. I’m only grateful I tasted so much of it when I had the chance. I have had a blessed life in that way, full of countless delights. When you’re dying, even your unhappiest memories can induce a sort of fondness, as if delight is not confined to the good times, but is woven through your days like a skein of gold thread.

  You do reflect on your past when you’re dying. You look for patterns and turning points and wonder if any of it is significant. You have the urge to relate the story of your life for your children so that you can set the record straight, and so that they can form some idea of where they came from. In recognition of this need, my home-nursing service employs volunteers called biographers, who visit patients, record their stories, then put together a bound copy of the finished product to present to the families of the dying.

  Susan Addison was my biographer. She came every Wednesday for more than three months to listen to my tales of triumph and failure, during which time we became more like friends than volunteer and patient. It was a happy coincidence that we were both interested in books and writing. Susan had a daughter who was a screenwriter in Sydney and knew some of the same people I’d known when I’d lived there and worked in the same job. Having a lot in common, we talked quite freely during our sessions together, and I came to learn almost as much about Susan’s history as she learned about mine. Very early on, for instance, she told me she had lost her only son to brain cancer when he was nineteen, a loss she had written about in her published memoir Mother Lode.

  She lent me a copy and I read it with a mounting sense of humility and respect. For someone like me, who knew so little about death, it was chastening to read this beautiful, unsentimental chronicle of someone who knew so much about it. Soon after her son’s death, Susan had lost a number of other close family members in quick succession, and it had made her something of an expert in grief. But in spite of her losses she had refused to succumb to self-pity. She’d had help, she told me. After some searching around for spiritual solace, she had joined the Quakers and was a regular member at their meetings. It was the silence of the Quaker meetings she liked, she said, preferring it to services where there were sermons and singing. And she had the support of a loving husband, to whom she had been happily married for more than forty years.

  Under the circumstances, Susan’s attentiveness to my ramblings about my own life was flattering. None of my past troubles could compete with the death of a child, not my parents’ messy divorce, or my own romantic flounderings, or my failures and setbacks as a writer. Mine was the privileged tale of someone who had not truly suffered. The fact that I was dying now was sad, but not tragic. I had lived a full life. Susan’s son had died on the brink of manhood. The two deaths didn’t bear comparison. This fact reminded me over and over again that my circumstances were less a cause for sorrow than an opportunity to feel thankful for my unearned good fortune. My two sons were still alive. I would not have to outlive them the way Susan had had to outlive her son. That alone was an immeasurable comfort to me. And I think Susan knew that. I think she understood that she wasn’t just my chronicler, but my guide, my travel adviser to that bitter country she had already traversed a number of times before me.

  And then one Wednesday Susan didn’t turn up. I waited for her to call to say she was running late, but no call came. I heard nothing for a day, until Leanne from the nursing service rang me with the saddest possible news. Susan had suffered a massi
ve stroke and was in hospital.

  ‘It’s not looking good,’ said Leanne. ‘I’m so sorry.’

  ‘I don’t believe you,’ I said. ‘I was the one who was supposed to die.’

  ‘I know. We’re all in shock. I’ll let you know as soon as I hear anything.’

  A few days later Leanne rang me to say Susan had never recovered consciousness.

  ‘That’s ridiculous,’ I said. ‘She was sitting at my kitchen table a week ago laughing, telling stories.’

  ‘I’m sorry,’ said Leanne.

  ‘I’ve got two books of hers,’ I said, as if the thought of her precious books might bring Susan back from the dead. The books were coffee-stained, scribbled in. She would want them returned.

  ‘I’ll let her daughter know,’ said Leanne. ‘Maybe she could pick them up.’

  ‘Please do.’

  Susan’s daughter rang and cried down the phone. ‘Shit, shit, shit, shit.’

  I couldn’t find any words to comfort her. I just told her how much her mother had helped me over the past few months.

  ‘It was a privilege knowing her,’ I said.

  ‘Thank you.’

  She picked up the books a couple of days before Christmas. So like her mother, tall, softly spoken, self-possessed.

  ‘It used to be the four of us,’ she said. ‘Now it’s down to Dad and me.’

  I asked her how her father was.

  ‘Not great,’ she said. ‘It was all so sudden.’

  Everyone said the same thing. It was so sudden, so unpredictable, a reminder to all of us that life is fragile. True, but it wasn’t how it was meant to be. Susan was supposed to bear witness to my passing, not the other way round. I was sorry we hadn’t recorded her life story instead of mine during our meetings. I was sorry she hadn’t had the same chance that I’ve had, to say a long goodbye to those she loved, or to prepare them for life without her, to the extent that that is possible. A sudden death cuts out all of the ghastly preliminaries, but I imagine it leaves behind a terrible regret for all the things left permanently unspoken. A slow death, like mine, has that one advantage. You have a lot of time to talk, to tell people how you feel, to try to make sense of the whole thing, of the life that is coming to a close, both for yourself and for those who remain.