In the Slender Margin (19 page)

There are two realities in the rooms of the dying—that of the people gathered around the bedside and that of the person close to death—and they are often as different from each other as night from day. In his Mennonite community on the prairies, Patrick’s uncle Henry was a sitter for the dying. When there was no immediate family available, Henry would sit at the bedside so that the person would not be alone. When he was imminently dying, Henry sat up and became suddenly sociable, as if welcoming the ones who had
gathered into his living room. When it was his turn, Henry became a sitter for the living—putting them at ease on his deathbed.

I don’t know if the drugs used to combat pain or shortness of breath or restlessness are fully responsible for the altered state of the dying. I don’t know if there is some chemical that gets released near the end of the race that allows us to be less afraid than we think we might be. yes, reads the headline in the
New York Times
,
RUNNING CAN MAKE YOU HIGH.
If we think of ourselves as marathon runners getting high on endorphins the closer we get to the finish line, well, that takes a bit of the sting out of the whole end-of-life conundrum.

In her judgment striking down the ban against assisted suicide in the spring of 2012, Justice Lynn Smith, of the B.C. Supreme Court, wrote, “Palliative care, though far from universally available in Canada, continues in its ability to relieve suffering. However, even the very best palliative care cannot alleviate all suffering, except possibly through sedation to the point of persistent unconsciousness.” The question of alleviating suffering is an old one. Ten thousand years ago, the practice of trepanation—drilling a hole in the skull with a flint knife to release trapped spirits—was practised in Turkey. In the sixties, John Lennon proposed to Paul McCartney that they have the procedure done. To which the saner Beatle replied, “Look, you go and have it done, and if it works, great. Tell us about it and we’ll all have it.” We have tried to relieve suffering by seeking certainty, moving from polytheism to monotheism in our search for the one God who might help
us—if not in this world then in the next. Religion tells us there is a purpose to suffering—a purpose that we might not understand but one that is known to a higher power. Whole treatises have been written on suffering by people whose knowledge of it is intimate. Paul Celan, Viktor Frankl, Elie Wiesel, Tzvetan Todorov and Primo Levi, amongst others, have all given voice to the atrocities experienced in Second World War concentration camps, and yet suffering, by its very nature, is an experience that is deeply private and nearly impossible to fully communicate to others. In a contemporary world where
no pain, no gain
, is a modern mini-narrative, suffering has come to be linked to a kind of exhibitionism and is often portrayed in our cultural psyche as something that needs to be “fixed.” I am not sure it is possible to completely alleviate suffering; I doubt that it is.

In the late 1990s, I met a woman who had come to Canada from Holland to care for her sister, who was struggling through the last weeks of her dying. She told me how, in Holland, when her husband was diagnosed with cancer, she went with him to the doctor to request help in ending his life. The doctor told them it was too early, that they would regret making the decision while there was still quality time left. They went away and lived as fully as they could until her husband was very close to death, and then the woman returned to the doctor and was given three pentobarbital suppositories. She gave the first one to her husband and he died peacefully before the others could be administered. The time between when he would have died of natural causes and his “assisted” death was short enough to be barely discernible; what mattered was the knowledge they both had that
they had some control over his last days. This woman did not understand why her sister, who had been in a coma for over a week, and who depended on home support workers to bathe her and empty her catheter and turn her to avoid bedsores, was not allowed to die peacefully a little ahead of schedule.

The focus on relieving suffering and providing a good quality of life as one approaches death is of enormous benefit; and yet, in the end, I left the work thinking that although palliative care is an invaluable piece of what is needed, it is not the only answer, and in Canada, where only 16 to 30 percent of dying patients receive palliative care, it is not even an option for many people. My experience was with people dying of terminal illnesses. The metaphoric language, altered states, the turning away from this life and the spiritual encounters that often happened close to death are all related to palliative deaths. There is no promise of a good death—with or without somebody to help us in our last days; there is only our perception of what our death might be. In the end, there are no definitive answers. No all-encompassing truths about death and how we die. Exposure to suffering changes us. Whereas I once thought death had its own timetable, I now think there can be great peace of mind when we have some say in the timing of our own death. “I’m deeply grateful,” Gloria Taylor, one of the plaintiffs in the B.C. Supreme Court ruling, told reporters, “to have the comfort of knowing that I’ll have a choice at the end of my life.” The words
comfort
and
choice
seem like good words to have in mind when considering one’s own death.

To work with the dying was to enter the darkness without a map of the way home; to merge, briefly, with something
greater than myself. It was to understand that while suffering could not be eliminated, it was possible, for brief periods, to try to inhabit it; to be present, often without a clue what to do—to accompany the dying as far as possible and to stand alone under the stars they disappeared into.

Robert Pogue Harrison, professor of literature at Stanford and author of
The Dominion of the Dead
, writes: “As
Homo sapiens
we are born of our biological parents. As human beings we are born of the dead—of the regional ground they occupy, of the languages they inhabited, of the worlds they brought into being.” We are not separate from the dead; we carry them with us. And they carry us. My brother, the woman whose bones broke like twigs, the boy dying of AIDS. My mother. The innumerable others.

“We had to be explorers,” said Elizabeth. And, we were.

The Mountaintop

A few years ago, I was invited to take part in a discussion about the artist and mortality at the University of British Columbia’s Green College. The evening, organized by writer-in-residence Don Hannah, centred on the question
Why do we make art about death?
Of all the reasons I thought of—for love, for beauty, to bridge our aloneness, to face our fears, to leave evidence of our existence in red ochre on cave walls,
to defy death, to transform it, translate it, transcend it—the one that resonated most deeply with me was the idea that art frees us from the literal. Art is the imagination’s take on death. It looks beyond the physical decline of our bodies to the mystery of our leaving. It allows angels to crash through the mortar of our ceilings and shows us the face of the Grim Reaper; it makes the invisible visible and invites us into other realities. “Art,” wrote the Japanese dramatist Chikamatsu Monzaemon, “is something that lies in the slender margin between the real and the unreal.” The same slender margin it could be said that the dying inhabit.

From our very beginnings we have told ourselves stories about death to explain the known, the unknown and the unknowable. Last year, in New York, my daughter and I went to see
The Mountaintop
, a two-person play that reimagines Martin Luther King Jr.’s last night on earth. In room 306 at the Lorraine Motel in Memphis, Tennessee, on April 3, 1968, Dr. King returns to his room on a stormy night, having just delivered the brilliant “I’ve Been to the Mountaintop” speech at the Mason Temple in support of a sanitation workers’ strike. The second character, a cigarette-smoking, hard-drinking maid, turns out, as the play progresses, to be a rookie angel on her first assignment: to tell the preacher he will be shot the next day and to prepare him for the journey into what Hamlet calls
the undiscovered country.

We meet in the slender margin between myth and reality, fiction and non-fiction. When some critics wrote that the play was not believable, I was flabbergasted. Why not a boozy, foul-mouthed angel to see us out? Why not an angel
with strands of humanity still hanging on, an angel who knows the life of matter, of earthly existence?

Art, says Tennessee Williams, is the one way we have to arrest time. Death masks in the eighteenth and nineteenth centuries preserved the faces of princes, poets, musicians, lunatics and murderers long after death. The Victorians posed with their dead, dressing them up in their best clothes and arranging them in lifelike poses. In the twenty-first century, the sheer volume of our exposure to death in films, news and television programming has trivialized death and resulted in a kind of voyeurism that leaves us strangely removed from death as a reality.

Who will interpret death for us? The artist, the visionary, the psychotic? The dying themselves, around whom mystery is made manifest? To be with the dying is to leave the known world and enter a world of spirit and hallucination, vision and visitation. It is to understand they navigate by dead reckoning: memorizing where they have come from and holding an image of where they are going in their minds while you, standing on the shoreline, watch as they slip the bowline and—guided by the moon, stars, wind, waves, clouds and currents—disappear from this world. It is not to sentimentalize but to remain open to possibility. Perhaps we must all strive to be—as Marianne Moore instructs the poets—
literalists of the imagination
, capable of presenting, when called upon,
imaginary gardens with real toads in them.

A friend told me about a dream he had a few hours before his wife went into labour with their first baby. Standing on a riverbank beside his late sister, he watched her cast a line in long, slow arcs over the water. When she landed a salmon,
she passed the rod to him to reel it in. The fish was magnificent, burnished gold and silver with scales like jewels—like the biggest catfish in the world that Ed Bloom catches the day his son, Will, is born in
Big Fish.
The same fish he turns into at the end of the film when Will carries him to the water and off Edward swims, now the big fish in the large lake of eternity. Like the fish my mother turned into when we scattered her ashes in Burrard Inlet and she disappeared in a flash of what looked like emerald scales beneath the water’s slate-grey surface. “A man,” says Will, “becomes his stories. They live on after him. And, in that way, he becomes immortal.”

We tell ourselves stories, not to romanticize or sentimentalize death, but to guide us and make meaning where we can. My master’s thesis was on Coast Salish perceptions of death and dying. In one of my conversations with the elder in the study, we talked about the dead and how they continue to be a part of our lives. “Some dreams,” she told me, “are simply dreams; others are visits.” For my friend, there was no doubt that his sister had briefly stood with him on the riverbank before all hell broke loose and his baby began to swim like a great fish towards him.

The late Irish writer John Moriarty believed that light blinds us to other realities. Standing in his kitchen with the lights out, he could see the natural light on the water and the rocks and mountains in their dark homes; turn on the light in the kitchen and the world outside disappears. In a radio broadcast he made when he was dying, Moriarty tells of a man who loses the key to his house in the shadows near his door and goes to look for it under a street lamp down the road. A policeman joins him in the search under the circle of
light until finally, when he says it’s not there and asks where the man lost it, the man replies that the key is in the darkness outside his home. The policeman asks why they are searching where they are and the man says it is the only light around and therefore he will search there.

The key is in the darkness. We must enter it in order to find our way home. We must, as Keats believed, be capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact or reason. The imagination is infinite; reason is limited. In Barcelona, a city marked by the genius and madness of Antonio Gaudí, the imagination is made visible. Patrick and I walked with our friends Patricia and Terence past balconies with shark eyes, pineapples on church spires, castles and turrets on top of buildings, and when we looked down at the sidewalk, we saw we were walking on starfish.
To go in the dark with a light
, wrote the American poet Wendell Berry,
is to know the light. To know the dark, go dark. Go without sight.

The slender margin between the real and the unreal is the margin between factual truth and narrative truth. To read the Bible literally is to miss the poetry at the heart of it:
Let the floods clap their hands; let the hills be joyful together
(Psalm 98:8). To approach death literally is also to limit ourselves. The body shutting down is, in and of itself, not mysterious: people sleep more, stop swallowing, have long pauses in breathing; the extremities cool and many people become incontinent, disoriented, congested; and most fall into an abnormal pattern of breathing called Cheyne-Stokes—a type of cyclic breathing that involves fast breaths followed by slower ones punctuated by periods of apnea. The final breath
is a shallow exhalation. The factual truth is objective. The narrative truth opens the door to the mysterious.

It is the story we tell ourselves:

Art lies somewhere between the corporeal and the spiritual: the sacred and the profane. I am closest to my mother and brother and innumerable others when I write about them. My friend Jan is a weaver. When she applied for a grant to teach women on her reserve to weave, the band council wanted her to teach women with alcoholism, as this would be good therapy for them. Jan refused. To her, the object of art is not therapy; rather, it is a way of seeing the world, an exploration. In terms of her weaving, it is a way to shake hands with the ancestors and to see the beauty of the world through their eyes.