In the Slender Margin (4 page)

I would spend my years at hospice trying to be as brave as the thief and biker who arrived like a drenched angel, on the back of a Harley, in the middle of a stormy night.

MY BROTHER LEFT HOME WHEN I WAS JUST A
KID
.
I REMEMBER HIS
black hair and chiselled cheekbones and the way he bounded up the stairs three at a time. When he was studying English literature at UBC, he took me to the old house he rented on Point Grey Road near the university. His room, on the top floor, was cramped with books piled on every surface and seemed to me to be a kind of castle turret. He threw a red blanket over my head and tackled me and we laughed and went down to the beach together, where he made a fire and we roasted marshmallows on sticks. Later that day, he showed me some empty cages that had been built around the outside of the house at ground level. The cages, eight feet tall by six feet wide, were littered with old peanut shells and were used, he told me, for gorillas the circus no longer had any use for. I don’t know what the cages were really used for. It never occurred to me to question him; even now, I can imagine my brother falling asleep to the grunts and barks of the great apes filling the city streets with the cries of the jungle.

Names

Every year, between eight and nine hundred people die on the Victoria Hospice program. In 1985, we gathered once a week in the garden to ring a bell and read out the names of those who had died that week. A friend, who started working as a counsellor shortly before I left, says the names are no longer recited and she can’t remember when the practice stopped.

What do we do when the names keep piling up? Each year, 60 million people die. The year my mother died, we decided to have Christmas away from home. On Sunday, December 26, 2004, we were skiing down Mount Washington through drifts of new snow when the Boxing Day tsunami killed 230,000 people in Southeast Asia.

In Washington, D.C., 58,267 names are written on black polished granite on the Vietnam Veterans Memorial—“the Wall” as it is otherwise known. At Sunset Beach, a short walk from Stanley Park on English Bay, the names of those who have died of AIDS in the city are cut through twenty steel panels on a wooded slope. The same wooded slope where I wove daisy chains to wear on my wrists and ankles in the mid-sixties. In the spring, when you stand with your back to the ocean reading the names, you can look through each one to the purple crocuses growing on the bank. In the winter, when it snows, each letter is a perfect white stencil. When you go to the website for the Vancouver AIDS Memorial Society, you will see that a lack of funding and volunteers leaves them unable to operate any longer.

“What,” asks Annie Dillard, “what will move us to pity?”

My husband, Patrick, grew up on the prairies. His grandmother, Maria, who lived in a small Mennonite community just north of Steinbach, Manitoba, was one of 50 million people who died of Spanish flu in 1918. When she was ill, people brought food and left it on her doorstep, not wanting to catch the disease themselves. The day Maria died, the family carried her body past her house; her mother raised herself on one elbow to see her daughter pass by on the way to the grave before she, too, died the next day. The word
influenza
, first used in Italian, has its origins in the belief that epidemics were due to the influence of the stars. An ethereal fluid, flowing from the heavens, was believed to directly affect the “character and destiny” of men.

In the late 1800s, smallpox bloomed up the west coast, killing half the Native population from Victoria to Alaska. At Fort Victoria, a Hudson’s Bay trading post to which Native hunters and trappers came from all over the province, whites were immunized against smallpox; Natives weren’t. When we fall sick, we head for home. One of the legends of the Kwantlen people tells of a fearful dragon with eyes of fire and breath of steam who lived not far from the village. When this dragon awoke and breathed upon the children, sores broke out where his breath had touched them and they burned with heat and they died to feed this monster. During the smallpox epidemic, the Kwantlen people along the Fraser River paddled softly so as not to wake the sleeping dragon. Is it any surprise we stop writing down the names and ringing bells?

An infinite number of things die every minute, writes Borges: “Events, far-reaching enough to people all space, whose end is nonetheless tolled when one man dies, may cause us wonder.” We feel for one what we cannot feel for many. Every so often my mother would stop in the middle of whatever it was she was doing and imagine what Ian might have looked like as a middle-aged man; other times she’d say, “I would have grandchildren by now,” and she’d calculate their ages. She used to tell the story of how she sailed from London to New York to join her husband, John, on the maiden voyage of the
Queen Elizabeth
with two young children in tow, and how, on the train across Canada, the prairie was covered in a sea of yellow rapeseed. They arrived in Vancouver on October 31, 1946. My sister was two, but Ian was old enough to go out trick-or-treating. He wore his British schoolboy’s outfit; people thought it was the greatest costume they’d ever seen.

Rough estimates indicate that over 108 billion people have died in human history. The living will never outnumber the dead. The World Population Clock, which operates continuously, currently estimates that each second 4.3 people are born and 1.8 people die. Of the 52 million people who die every year, 150 are killed by falling coconuts, which, if true, makes the tropical fruit about ten times more dangerous than sharks.

I remember the names of the patients I met early more readily than I do the later ones. When the names became too many, I remembered faces; when the faces overwhelmed, I remembered people by the diseases they died of: the man on the farm who died of Lou Gehrig’s, the baby with the glioblastoma, the sailor with throat cancer, the cyclist with bone
cancer. The actress in a green velvet dressing gown with a tumour growing in the shadow of her heart.

This morning I wake up wondering what the name
Ian
means. In an online reference I find it is the Gaelic form of
John.
I didn’t know he was named after his father. In Scottish, the name means— “Gift from God.”

Only now does it occur to me that he made two train trips across the country: one when he arrived, as a boy, through fields of yellow; the other in a box the colour of the prairie sky.

The world’s seven-billionth person, Danica May Camacho, was born in the Philippines on October 31, 2011—sixty-five years to the day after my mother arrived with her two children from England and my brother headed straight out into the goblin- and ghost-filled streets of his new home.

Taming Death

I recently read a description of a local creek that has changed the way I hear water.
Colquitz Creek
, named by the First Peoples of the area, translates roughly into “baby crying and crying until it is exhausted and no one is going to comfort it.” There is an inconsolable quality to water that I didn’t recognize until I heard it named.

Prior to the 1969 publication of
On Death and Dying
by
thanatologist Elisabeth Kübler-Ross, a great silence prevailed in North America. Death was denied description because it was denied expression. As a society, we bury our dead and yet often refuse to let them die. There have been thousands of sightings of Elvis since his death. At the funeral, his father, Vernon, allegedly acknowledged that the corpse in the coffin did not look like his son. “He’s upstairs,” he told the crowd. One wonders how far upstairs he meant. In a death-denying culture, we vacillate between fear and fascination.

When my brother died, it was as if snow were falling all over the world; there is no silence as perfect as that of the shell-shocked bereaved trying to be brave. Kübler-Ross gave death and dying a language. She developed a series of seminars using interviews with terminal patients in which she encouraged physicians and others not to shy away from the sick but to get closer to them.

On the prairies, in winter, farmers have been known to tie a rope between the house and barn so they don’t get lost in a blinding snowstorm. Kübler-Ross’s model served as a kind of rope for the times when it seemed all landmarks were gone. She brought the subject out of the privacy of medical schools and delivered it to the streets. Death was out of the proverbial closet, so to speak. Her five stages of grief—denial, anger, bargaining, depression and acceptance—provided new ways to speak and think about loss, for the dying and for the bereaved. One of the misconceptions about this model is that one needs to reach acceptance in order to have a good death. In actual clinical practice, psychologist Therese Rando notes that true acceptance, as articulated by Kübler-Ross, is seldom witnessed. Rather, it appears that as patients get closer to
death, the realization of the inevitable often provides a sense that “one’s time has come” which, in some cases, allows the patient to make peace with the fact that there is nothing else to do. The line between acceptance and surrender is a very fine one. “I may not like this,” one patient told me, “but the boat’s leaving and I’m jumping on.”

Not long ago, I met a family whose mother was dying of heart failure. Emotions were changing in the room like a spring day, with its hail one minute and sun the next. One daughter, at peace with her mother’s dying in the morning, was bargaining with her to eat, in order to regain her strength, by early afternoon. A son who refused to accept that death was imminent, who had been in denial since his mother was admitted to hospital as a palliative patient, was the only one who answered his mother directly when she asked if she was dying. “Yes, Mom,” he said, “you are in the hospital and you are dying.” She responded by thanking him. “I’ll miss you,” she said, “I’ll miss everything.” She then closed her eyes and said, “Well, I’d better figure out how to do this, then.”

There is no road map for the dying or the bereaved. No linear path. There are stages that go back and forth. Moments of grace, moments of anguish. Grief is a mess. Studies in medical anthropology have shown that death is defined as “good” if there is awareness, acceptance and preparation and a peaceful, dignified dying. We tame death with our ideas about it.

Historically, the good death, as established by religious doctrine, was one that was fully and consciously prepared for. In the Middle Ages, the dying organized their own bedside
ceremonies, where friends and family gathered to eat, drink, play games and pray. The dying person expressed sorrow that life was coming to an end and spoke openly about his or her life, seeking forgiveness or forgiving others. The emphasis was on the soul’s future. French historian Philippe Ariès referred to these ceremonies as “tame deaths.” Ariès believed that when the bedside ceremonies were completed, and peace had been made, death was tamed because it was under God’s control.

“In the twenty-first century,” says Miriam, a hospice counsellor, “the good death, like the good birth, speaks to me about the need for control or a plan.” A plan that, until fairly recently, many people believed was God’s. Baby boomers may be, as a generation, the first group to face death without the structure or comfort of faith. Religious counsel has largely been replaced by secular grief counsellors who call upon the rhetoric of psychology and are parachuted in when tragedy strikes. Our grandparents trusted doctors: they were like priests. This was before Google turned us all into specialists. What does this mean for us? In the absence of faith, what do people want?

“No pain, no symptoms, mental clarity, choices around location, love, a big-screen TV, a death without lingering, death without ugliness,” muses Miriam.

“What do they want?” she goes on. “A sense of humour, grace, profound final conversations, no final conversations, no death, to hear that it has all been a mistake, to be able to return to work, no service, no funeral. No place in the ground that will be a site of weeping and remembering. And, yet, to be remembered. Somehow.

“We’re terrified,” she says, “that we need to be our own specialists.”

We know everything and nothing. We’re terrified that no one really knows anything. It is hard to have a good death when one is in terror. I saw many good deaths in hospice, when both patients and their families were ready and death occurred gently, and I also met people who felt they were failing at their own deaths; some who didn’t feel ready to die, others who felt frightened and unprepared.

There were many times I too felt frightened and unprepared in the face of a difficult death. Some deaths are tame, others are feral: wild and unpredictable. I felt helpless one evening when I was called to see a young woman who desperately did not want to die. Death, like birth, has a momentum of its own. Her breathing was rapid and shallow, like a woman in the transitional stage of labour. The only thing I could think to do was to match her breathing; a rhythm that, once started, brought back my own experience of birth. When my pain had been too intense, panting had helped to ease it. When I didn’t think I could go on, focusing on the breath helped. As I slowed my breathing, she too slowed hers. I talked to her about breath and transition and the hard labour of dying; the language of birth was no different from the language of death. There had been no time to put a chair beside her bed; when I came into the room, I sat on the side of her bed. When she died, my face was inches from hers and her parents were each holding one of her hands.

With birth, we labour to bring a squalling baby into the room; what, then, I ask with no small amount of exasperation, do we labour for in our dying? This feels like a brainteaser,
a thanatological Rubik’s cube. Imagine three rooms: one we come from, one we live in and one we exit into. We labour to be born and we labour to die. We enter with our mother’s hard work and exit with our own hard labour. The obvious analogy is the clichéd one: we come from the unknown and depart for the unknown. In between we dig ditches, build cities, plough fields; we toil under the midday sun and, exhausted, we share the fruits of our labour. Maybe, just maybe, what matters is not the purpose of the work, but the work itself.