In the Slender Margin (5 page)

Work through the morning hours
, goes the old hymn,
work in the glowing sun. Work for the night is coming, when man’s work is done.

It can be a comfort for some families to think of dying as work. There is a purpose to work, an inherent self-sufficiency. If we can work, we can look after ourselves; there is a feeling that we are not completely helpless. Breath is crucial to both kinds of labour. Prenatal classes focus on breath and pain; the progression in Lamaze classes is from deep to shallow breathing. The dying, too, move from regular deep breaths to shallow mouth breathing. At the end, the dying often look like fish out of water, their mouths opening and closing in a kind of reflex. One could almost mistake these last breaths for silent kisses.

The sights and sounds shook me. There were nights, after a difficult shift, when I would take my clothes off and drop them outside the bedroom door. Nights I didn’t want to touch my children, when I felt I carried death with me on my skin like a contagion. Once, after a visit at which the smell of
death was too strong, the nurse I was with stopped the car and we got out and buried our faces in a lilac bush hanging over a white picket fence in a quiet neighbourhood where nobody needed us.

Everything we love, we must leave. How is it we are not inconsolable? Like water running or baby crying?

Of the twelve principles for a good death identified by the authors of the British study
The Future of Health Care of Older People
, eight have to do with control—from the right to know when death is coming to retaining control of it when it happens. As much as we plan for death, there is something that escapes us, something we can’t quite take in. “One of the main reasons it’s so easy to march men off to war,” says Ernest Becker, is that “each of them feels sorry for the man next to him who will die.” Unlike lion tamer Clyde Beatty, who tamed his cats with a chair and a whip, we use our intellect to try to bargain with death, thinking we can make a deal, forgetting there is a wildness at the heart of it.

Some of us drink beer instead of hard liquor, or vow to smoke five cigarettes a day instead of twenty-five if only we can keep smoking; some, like the thirty-three Chilean miners hauled up out of a collapsed mine 2,300 feet deep in the Atacama Desert on August 5, 2010, after sixty-nine days underground, promise to give up mistresses and return to the Church as new and devoted men.

We forget, as Kay Ryan’s poem “On the Nature of Understanding” shows us, how unpredictability is built into things:

Say you hoped to

tame something

wild and stayed

calm and inched up

day by day. Or even

not tame it but

meet it halfway.

Things went along.

You made progress,

understanding

it would be a

lengthy process,

sensing changes

in your hair and

nails. So it’s

strange when it

attacks: you thought

you had a deal.

Within days of starting work at hospice, it became clear to me that what we hope to control and what we actually control are vastly different things. “We are most deeply asleep at the switch,” writes Annie Dillard, “when we fancy we control any switches at all.”

A man in the final stages of ALS reconnected with a daughter he had been estranged from for many years. Paralyzed from the neck down, he wanted to change his will to include his daughter, but his second wife did not want it changed and would not help him. The day before he died, four colleagues from work came to his house, carried him to
the car and drove him to a lawyer, where he responded to questions by blinking his eyes and succeeded, in this way, in changing his will. He went into respiratory distress that evening and died shortly after being given enough morphine to feel that he wasn’t suffocating to death. Our idea of control may undergo profound changes as we approach death. Václav Havel believed that hope was not the same thing as optimism. It was not, he believed, the conviction that something would turn out well; rather, it was “the certainty that something makes sense, regardless of how it turns out.” In the end, what we control may be as minute as the blinking of an eye.

One night recently, Patrick and I curled up in bed and watched
Philadelphia
on my laptop. In the morning, he commented that the final scene, in which Tom Hanks lies dying of AIDS in a room full of family and friends, seemed like a portrayal of a good death. In 1993, when Jonathan Demme made the film, the disease was still a stigmatized illness. That same year, Russian ballet star Rudolf Nureyev, known to have AIDS, was said to have died of “cardiac problems.” He was buried in his evening clothes with his medals and favourite beret.

In the mid- to late eighties, young men dying of AIDS radicalized the dying process. Their bedside ceremonies were secular incarnations of the tame deaths of the Middle Ages. AIDS activist David Lewis, a Vancouver psychologist who committed suicide in 1990, disclosed to a local newspaper that he had assisted in the deaths of eight of his friends who had the disease. Lewis’s friends came when he decided it was
time. One secured the Seconal that was needed; others sat with him, visiting, drinking a few beers and saying goodbye. A nurse set up the IV, but the suicide note left by Lewis was clear: it was he who had turned on the spigot releasing the drugs into his system. He died within the hour. For Lewis and his friends, death was a kind of final political act.

We want to believe in the good death. With all our hearts we want to believe in this.

Often, when death finally comes after a long illness, it is good simply because it is an end to suffering. I saw people who were ahead of their own deaths; people who were ready but whose bodies were not quite done. I saw families who said their goodbyes and then waited for what seemed like intolerable days of pointless suffering; people who questioned whether or not we were kinder to animals, by putting them out of their suffering, than we were to our own kind.

Joseph, a Baha’i, knocked on God’s door every night. Too weak to get out of bed, each night he visualized himself standing in the doorway, calling into an empty room.

“Hello,” he called out, “is anybody there?” All around him he could hear the scratchings and scrapings of ascension. Every night Joseph went to the door, and every morning he cried to find himself denied access.

The door of knowledge of the Ancient Being hath ever been and will continue to be closed in the face of man
, decreed Baha’ullah. How fair is that? Joseph was ready to die two weeks before his body gave out.

It’s a long walk we take at the end to meet our maker. You’d think someone would answer when we bang on the door.

In a visit reminiscent of the scene in which Tom Hanks, enraptured, listens to Maria Callas singing the aria “La Mamma Morta” from Umberto Giordano’s opera
Andrea Chénier
, I met a thirty-year-old man dying of AIDS who was in his small rooftop garret listening to
The Four Seasons
by Vivaldi when I arrived. The volume was cranked as high as it could go and there was both a madness and an exquisite beauty to the violin’s interpretation of “Winter.” That’s all I remember—sitting beside him, listening. Tears streaming down both our faces.

My nephew, Isaac, was born deaf. A few years before he died of AIDS, in his early twenties, I learned sign language so that I could speak with him. When I painstakingly spelt out my first greetings to him, he turned to his mom and signed, “Is there something wrong with my auntie?” My words, slowly and deliberately formed, hung in the air one silent letter at a time. The sign we both understood was the one he made for
crazy
as he kissed my cheek and took off out the door.

At Isaac’s funeral, in a hall on the Burrard Reserve on Dollarton Highway, his father, Leonard—who had just finished a round of chemo for throat cancer—bent down low, spread his arms wide open and began, haltingly, to dance his son’s eagle dance. It wasn’t that he became an eagle that struck me so deeply, but that he remained a man, earthbound, limited, moving in sweeping circles around his youngest son’s casket. Tilting towards earth the way the great birds do.

And what was it we wanted? To be remembered. Somehow.

Hope

Hope
, writes Emily Dickinson,
is the thing with feathers that perches in the soul.

This kind of hope makes us giddy. Our hearts somersault, we feel it in our bodies. This kind of hope is a bird: a quickening, a fluttering, we feel it in our chests. It lives inside us, a ruby-throated beauty. It flies and sings and, if shot down, plunges to the earth.

To speak about hope can be tricky. We’re told not to lose it, as if it were a thing we might misplace if we’re not careful, like our passports or car keys. We’re told we must have it and that we can’t live without it and that it’s still there even though we can’t see it—like one’s invisible childhood friend. Hope and prayer are often linked together. When faced with serious challenges, we might say, “I hope and pray” that things work out. Prayer, unlike hope, looks to a higher power to intervene. Hope is earthbound—a kind of secular prayer.

Recently, I read an article by Dr. Martin Scurr, medical columnist for the
Daily Mail
, in which he wrote, “Should I discover tomorrow that I have advanced, life-threatening cancer, I won’t go rushing to the doctors for a heavily invasive course of medical treatment. No, I will shut up my London surgery, head to my home in Norfolk, stock up on gin and tonic and have a jolly good time until I meet my end.” Doctors, it seems, base their hope on what they’ve seen; they know enough about modern medicine to know its limits. The
rest of us are often unsure what to base our hopes on. A fine Scotch whisky, I think, is a good start.

The language of terminal illness is characterized by hopelessness. There is nothing left to do, there is no hope for a cure; It’s hopeless, people think and are often told. What I found, over time, was that hope changes. Sometimes meaning is found in the last weeks moving slowly towards death—in a reconciliation or an opportunity to speak about things not spoken about before; in celebrating a last birthday or the birth of a child. We are hard-wired for hope. Illness itself is hope’s alchemist. At the beginning, with the initial diagnosis, the hope is for a cure; over time, as the person loses any quality of life—when they’re unresponsive or in intractable pain—the hope may be for an end to suffering.

Viktor Frankl believed it was possible to find ways to create meaning out of suffering. Meaning is not something handed down from God, in Frankl’s opinion; rather, it is to be found in our own human responses to tragedy. When a good friend of my daughter’s died attempting to rescue a kayaker caught in a whirlpool, his family was devastated but found some solace in the fact that he died trying to save a life. Families of accident victims may find a measure of comfort if their loved one’s organs can be used; sometimes people fight to have laws enacted—to toughen drunk-driving penalties, for instance—or create scholarships in the name of the deceased. We look for meaning; our hope is that our loved one did not die in vain.

From the Old English
hopian
, meaning “to wish, expect, look forward to something,” hope allows us to imagine a future. On the other hand, if we’re not careful, if we’re too
focused on what we want to happen, we can miss what is happening right in front of us. Hope can be a thief. It can steal the present moment right out from under our feet.

Species Song

In the preface to her book
Hologram
, P. K. Page explores the relationship between voice and influence. In trying to understand how poets come to sing their own unique songs, she came across a report by an ornithologist who raised songbirds in isolation in order to understand how they learned to sing. Removed from their nests before ever hearing a note, the birds cobbled together a kind of song; not species perfect, but a song nonetheless. When introduced to the songs of other birds, not of their own species, he discovered that they chose the notes and cadences that completed their own species song.

“Of course,” she thought, “that is what poets do. We have a song—of a kind. But it is not until we have heard many other songs that we are able to put together our own specific song.”

I came to hospice without the framework that established beliefs offer. God was a benign presence in the house I grew up in; my mother believed in some kind of afterlife, although she couldn’t say what. I’m still not sure, when I pray, whom or what I pray to.

I know very little of my Jewish ancestry since that lineage is on my father’s side and Jewish identity is passed through matrilineal descent. From Baghdad to Russia to Calcutta and Shanghai and on to Israel, my ancestors studied Kabbalah and steeped themselves in Jewish and Arabic philosophy; they were Levys and Cohens and had names such as Seema, Mozelle, Solomon and Dafna. Still, I do not qualify as a Jew. On the other hand, my former marriage to a Coast Salish man made me legally an Indian under section 12(1)(b) of the Indian Act. I am at home in the longhouse and a stranger in the synagogue.

Within Salish culture there is a familiarity with death based on an extensive history of loss. The dead are said to walk amongst the living and children are told not to eat outside after three p.m., as the ghosts are hungry and lonely for human company. Death is no stranger. Sometimes he appears as a man in a long black overcoat sitting in the branches of a tree swinging his feet. Sometimes he disguises himself as a bird. Sometimes there is a sign. On the night my father-in-law died, a high wind howled around our house, causing the lights to flicker on and off. At the same time, a thousand miles away in San Diego, the lights flickered in his eldest daughter’s house.

I was intrigued by what I often saw as a practical response to problems of the spirit in Salish culture. On the West Coast, fire is a conduit between worlds. Among all phenomena, said French philosopher Gaston Bachelard, fire is the only one that can be so definitely attributed to the opposing forces of good and evil. “It shines in Paradise. It burns in Hell. It is a pleasure for the good child sitting prudently in front of the
hearth; yet it punishes disobedience when the child wishes to play too close to its flames.” The Egyptians believed it to be an insatiable animal, Persians made sacrifices to it; at the beginning of astronomical study, people of the Middle Ages thought that fire was in fact food for the stars. Prometheus stole it from Zeus and returned it to mankind; a Salish legend tells how Beaver and Woodpecker stole fire from the Salmon and gave it to the ghosts.