Dying while Alive

I had never seen anybody die. Until my mother became demented I had never even seen anyone gravely ill. My mother’s decline was slow at first, and then very fast. Toward the end she was barely recognizable as the mother I had so loved and admired. I was out of the country when she finally died, but I was there in the months preceding her death and I saw the ravages she suffered, the pain and humiliation, the loss of independence and reason.

She was in a nursing home when she died, a place of such unremitting despair it was a test of my willpower just to walk through the front door. The last time I saw her, I stood by helplessly while she had her arse wiped clean by a young Japanese nurse. My mother was clinging onto a bathroom basin with all of her meager strength, while the nurse applied a fresh nappy to her withered behind. The look in my mother’s eyes as she turned and saw me watching reminded me of an animal in unspeakable torment. At that moment I wished for death to take her quickly, to stop the torture that had become her daily life. But still it went on, for a dozen more months, her body persisting while her mind had long since vacated the premises. I could not think of anything more cruel and unnecessary. I knew I had cancer by then, and a part of me was grateful. At least I would be spared a death like my mother’s, I reasoned. That was something to celebrate. 

It was my mother who introduced me to the debate around assisted dying. She first came across the voluntary euthanasia movement, as it was then known, sometime in her sixties, and I knew it was a cause she continued to support, because she made a point of telling me. Back then I took far less notice than I should have. My mother was asking me for help, but it wasn’t clear what kind of help she wanted­—perhaps just a bit of encouragement to look into the problem more closely, to obtain the necessary means if it came to that. I wasn’t very receptive. In those days there was nothing wrong with my mother, or with me, so her arguments in support of the concept of assisted dying were purely academic. Of course, by the time they were real and urgent, my mother had left it too late to put theory into practice, and her mind had lost its edge, so that even the most well-meaning doctor in the world could not have helped her, despite her years of devotion to the cause.

I wasn’t there when my father died either, also in a nursing home, and also from complications arising from dementia. My parents had divorced some 35 years previously, and I had subsequently become estranged from my father. But one of my abiding memories of him is his fantasy solution to the indignities of old age. He told us—me, my mother, and my older siblings—that he planned to sail out into the Pacific Ocean and drown himself. He repeatedly balked at the first hurdle, however, by never obtaining a boat. He would read boat magazines and circle the For Sale ads in them. He would drive long distances to look over boats he liked the sound of, but he would always find a reason not to buy: money was short, or he didn’t want to sail alone. At one point, he even asked my mother to buy a half share and to crew for him, an offer she declined. Maybe she should have taken him up on it. Maybe they should have sailed off into the sunset, never to return; instead they lived on and died badly.

Related: Tricycle Teachings: Dying & Death

No doubt my horror at how my parents ended their days influenced me to look into how I might improve things when it came to my turn. With this in mind, soon after I was diagnosed with cancer, I followed my mother’s lead and joined Exit International, wanting to get up to speed on the latest developments in the assisted dying field. I also joined Dignitas in Switzerland, where it is legal for foreigners to obtain assistance to die, provided they are suffering from a terminal illness. This was an information-gathering exercise to explore the choices available to me, other than those offered by my doctors. I don’t wish to disparage the doctors who have cared for me over time. Individually they’ve been extraordinary, and of course I owe them a debt of gratitude. Apart from the palliative care specialists I’ve spoken to, however, none of my doctors ever raised the subject of death with me, a fact I still find mystifying.

So another motive for joining Exit was to find a forum for simply broaching the topic, challenging the taboo that I felt was preventing my doctors from speaking openly to me about something so pertinent. Despite the ubiquity of death, it seems strange that there are so few opportunities to publicly discuss dying. Exit meetings are the only occasions when I’ve found it is possible for people to speak about death as a fact of life. The mood of the meetings is upbeat. My local chapter meetings are usually attended by about 40 members, many of them elderly, but with a sprinkling of younger people eager, for whatever reason, to exchange information about ways and means to die. There is an inevitable cloak-and-dagger element to these gatherings, given that mere advice regarding suicide has the potential to be construed as a criminal offense. But this only adds to the atmosphere of bravado and high spirits. And of course there is humor. Did we all hear about Tom, nudging ninety, who decided to take his helium bottle up to his local cemetery and gas himself there? Apparently he figured the dead are unshockable. And by the way, anyone who is interested in a refresher course on helium, please sign on for the upcoming workshop as soon as possible, as numbers are limited. It might be any meeting of any common interest group, a bowling club, or a bird-watching fraternity, except that, after the tea break, it’s back to rating cyanide and nitrogen gas according to ease of use and speed.

The chief benefit of these meetings to me is their spirit of camaraderie. It takes courage to contemplate one’s own death, and it is inexpressibly lonely. To find companions who share your desire to know more, to take the initiative, and to laugh in the face of our shared mortality is a gift. How different from the experience of the hospital waiting room, where you sit in a glum herd with the overhead televisions blaring, guarding your dirty little secret until such time as your name is called. Whether it’s good news or bad, the message is the same. In hospitals we don’t talk about death; we talk about treatment. I would come out of consultations feeling as if my humanity had been diminished by the encounter, as if I’d been reduced to my disease alone, as if everything else that defines me had fallen away. By contrast, I came home from my Exit meetings emboldened, convinced that Camus was right: suicide is the only serious philosophical question.

Exit encourages its members to keep the conversation going by forming smaller coffee and chat groups with friends. Ours is chaired by Jean, a sprightly widow in her early eighties, who lives not far from me, in Kangaroo Point. There’s a café near her flat where we can sit outside at a secluded corner table. We like to avoid being overheard. Counting myself, we are six regulars. I get a lift to meetings with Andrew, who has kidney cancer, and Colin, who has early stage Alzheimer’s disease. Tony arrives on the bike he manages to ride despite his Parkinson’s shakes. And Carol drives an hour and a half from the suburbs of the Sunshine Coast. There is nothing physically the matter with Carol, but after years of abuse, both emotional and physical, from her husband, she survives on a cocktail of antidepressants and antianxiety medications. Her mental suffering makes her question the value of going on. The talk is remarkably intimate. Everyone knows why we’re there. It’s to comfort one another, to offer companionship. We’re like the last survivors on a sinking ship, huddled together for warmth. 

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 were 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 scenarios: the lonely hotel room and the traumatized 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 practiced. Perhaps other, older medical traditions understand and embrace grief and loss better than we do. And I wonder about the morality of the government subsidizing expensive experimental cancer drugs while other worthy areas of research go begging. As an example, the last melanoma drug I took, between 2014 and 2015, was priced at $8,500 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.

Relayed: Death is Not an Emergency 

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 churchgoer?” he said. “No,” I replied.

“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 nonbelievers like me.

“I can’t be certain why this is,” he said, “but it probably has to do 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 elevator 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 somber 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 were about to take 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 organization 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 counseling 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 realizing 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 would 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 hourlong 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 call 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 colored lounge chairs. A box of tissues was placed handily on a side table, along with a tall 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 counselor had visited me in the 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 40 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 than when they’re 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 counseling, 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 nonexistent.

“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 wasn’t sure she had heard of Sartre, or valued 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 veranda 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 kilometers. 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, pedaling 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 neighbor’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. 

♦

From Dying: A Memoir, by Cory Taylor. Published by Tin House Books in August 2017. Reprinted with permission of the publisher.