In the Slender Margin (18 page)

My brother lies buried amidst a sea of flat stones. The only thing visible on the manicured lawns are the people standing at the graves. In that graveyard, the mourners stand out like prey. Bill, a soft-spoken, humble man, believes the physical and emotional needs of the mourner or the visitor are most often overlooked; as much as possible he tries to create spaces that honour the corporeal self—that pay attention to sight, touch, sound.

The memorialization of babies poses a particular challenge. Until recently, infants were often buried in separate sections in graveyards, along with convicts and the unidentified.
In
Tess of the D’Urbervilles
, Tess gathers some flowers, tips the sexton with a shilling and a pint of beer, and buries her baby by lantern-light in the churchyard in the dead of night “in that shabby corner of God’s allotment where he lets the nettles grow and where all unbaptized infants, notorious drunkards and suicides and others of the conjecturally damned are laid.” In
The Book of Oaths
, written in 1649, mid-wives were instructed to bury a baby in such a secret place “as neither Hogg nor Dogg, nor any other beast may come unto it.” When babies are born under twenty weeks, the parents can choose to have the hospital “dispose” of the body; over twenty weeks, it is up to the parents to take care of arrangements.

In English folklore, unbaptized babies are said to become butterflies or moths, pixies and will-o’-the-wisps. In one of his most recent projects, the Little Spirits Garden at Royal Oak Burial Park, it would seem that Bill and his partners have tapped into that magic thinking. Little concrete spirit houses in a wooded grove signify individual losses, while clusters of the houses, scattered throughout the site, are visible evidence of a community of mourners. This tiny village will memorialize over three thousand babies. In the trees above the houses are thin wood-veneer sheets on which people can write messages or hang little bells or beads. The
wind notes
, as they are known, move in the breeze the way mobiles move over the heads of babies in their cribs.

It is Remembrance Day today. When I was a girl, my mother and I would dress up and walk to the cenotaph in Victoria
Park, where we’d stand a short distance away from the veterans in their blue blazers and berets and watch as wreaths were laid at the base of the memorial. At the time, I didn’t understand that the granite monument was symbolically an
empty tomb
honouring those whose remains were elsewhere. The death of a loved one has more to do with the phantom limb than the amputation. “What replaces the body,” says Bill Pechet, “is its absence.” What is gone still has form; the space that was once occupied is, not unlike the non-existent limb, a shape forged on the anvil of memory. There is nothing as silent as the room in which the newly dead lie. We hear both the absence of sound—gone the laboured breathing and congestion, the intermittent breaths—and the presence of silence. The absence of sound is what is taken away; the presence of silence is what replaces it. In this silence, we listen with a kind of wonder.

From lonely funerals to strange fairy-tale memorials, there are people who spend their days giving absence a form: caring for the dead, speaking for them when there is nobody left to do so, washing their bodies, dressing them, burying and cremating them, and daydreaming about where they will live and how they will build a home for them. People who work at creating spaces where, if we listen, we might hear the dead speak to us.

I am deeply moved by the individuals who work to honour the dead; and yet, as a society, we often fail miserably. An article in the
Globe and Mail
in early November 2012 revealed that a federal burial fund, called the Last Post Fund, meant to assist impoverished veterans with the cost of a funeral, has rejected more than two-thirds of the applications
it’s received since 2006. Traditionally, the last post is a bugle call played as a final farewell symbolizing that the dead can rest in peace. According to the executive director of the fund, the government just doesn’t see this as a priority. What does this say about us? What, one wonders, have we forgotten?

It matters how we care for the dead; how we navigate between duty and care, obligation and tenderness. We are not separate from the dead—we carry them with us. And they carry us. Surely we are their guardians just as they are ours.

On Remembrance Day 2005, a group of First Nations elders, veterans and youth travelled to Ypres and Normandy to conduct “calling home ceremonies” to invite the spirits of those who had died overseas to return to their homelands and rest with their ancestors in Canada. Calling the dead the way my mother stood on the porch on early summer evenings and called out my name until I reluctantly stopped playing and followed her voice home.

How do we call our own dead? And, when we call them, where do we call them home to?

A. L. KENNEDY’S BOOK ON BULLFIGHTING OPENS WITH HER SITting
on her window ledge four storeys above the street contemplating suicide. She is saved from herself by the sound of a man’s voice singing “Mairi’s Wedding” in the distance, a song she hated with a vengeance as a child. Murdering myself, she thinks, to this accompaniment is more than I can bear. She climbs back inside her apartment and, sorting through her potential projects, decides to take up an assignment writing about bullfighting in Spain.

On the way to her first bullfight, Kennedy catches a southbound sleeper train from Madrid’s Atocha station to Granada. The same train that Federico García Lorca took, against all advice, on the night of July 13, 1936, when he left the safety of Madrid for the uncertainty and danger of his home in Granada. The silver-leaved olive groves and terraced rows of almond trees would have been much the same, but the wind turbines are new. Lorca would not have seen those giants turning cartwheels like acrobats on the hills or heard their steady hum like the thrum of ten thousand blackbirds in the air. Less than a month after arriving at the Huerta de San Vicente in Granada, he was executed by a Nationalist death squad and tossed into an unmarked grave.

When Kennedy leaves Granada to return to Madrid, she takes the night train. “Although this is stupid and pointless,” she writes, “I want to leave on his behalf … I want to reverse that last sleeping-car journey Lorca made to come home—unravelling the mistake, sleeper by sleeper, back to Atocha Station, Madrid.”

There is no such unravelling I can do for my brother. Like the twelfth fairy in “The Sleeping Beauty,” I want to
change the curse of death to a peaceful sleep, but I have no such power. I have imagined sitting with him, holding him, on the wet road outside Toronto before help arrived, but this is a sentimental exercise: we do not meet there. If anything, we meet in this roving collection of my thoughts on death. He appears, unbidden, when I least expect him.

I was getting ready for bed when the ambulance attendants were lifting up his broken body. I hope he felt safe in the arms of the stranger who must have appeared as an angel whether or not one believes in them. I hope that he saw the Pleiades, or Seven Sisters, flung out above him. In ancient times, it was believed that the veil dividing the living from the dead was at its thinnest point when the stars of the Pleiades reached their highest point in the sky. I hope that his father was there waiting as fathers have waited patiently for their sons forever. When Priam comes to Achilles, in book twenty-four of the
Iliad,
asking for his son’s body to be returned to him, Achilles agrees for no reason other than human decency. He replies that all will be done as requested and takes the aged king by the right hand at the wrist, so that his heart might have no fear.

I hope that the last person to touch my brother was tender, and if they arrived when he was taking his last breaths I hope one of them touched his right hand at the wrist, so that his heart might have no fear.

Events, far-reaching enough to people all space, whose end is nonetheless tolled when one man dies, may cause us wonder.

—JORGE LUIS BORGES,
Dreamtigers

Last Visit

On a summer day in 2005, I visited my last hospice patient at 3602 Shelbourne Street in one of the complexes for seniors known as retirement communities. There was nothing dramatic about the visit; rather, I remember how ordinary death had become. The nurse and I walked into the lobby and introduced ourselves as the palliative care team—three words that magically cleared the way for us to enter gated and private residences—as if death itself had come to call. We made our way to the elevator, past the lunch menu on a blackboard beside the desk and the fake waterfall with tropical plants in a corner of the room, and rode to the sixth floor, where we got off and walked down a long carpeted hallway to room 601.

There was not a lot for me to do on this visit; the patient lived on her own and had a twenty-four-hour home support worker to help bathe her and give medications. The apartment was full of death’s paraphernalia: drinking glasses with labelled syringes, laxatives and anti-emetics, a walker, a raised toilet seat and handrails in the bathroom, an oxygen tank with its serpentine hose coiled in the bedroom, and a tackle box full of medications on the kitchen counter. The patient, in a Red Cross bed, was in a coma and very peaceful. I looked
around the living room at the photos of her grandchildren, the crocheted pillows, the glass cabinet with its delicate glass figurines and willow-patterned china, and I felt indifferent. I had overstayed my welcome in death’s house. I had more acquaintances amongst the dead than amongst the living. My mother-in-law believed a long parade of ghosts followed me like the tail of a kite wherever I went.

That afternoon, the cheers from a nearby soccer game, the smell of car exhaust, and of pizzas from the joint across the street, the slow wave of a sprinkler arcing across dry grass and the first autumn leaves hanging from the poplars all seemed to be part of the quotidian world—a world where not everybody I met was going to die a few days or weeks after I met them. That’s it, I thought, I’m done with death, as I closed the door and walked out into the glare of the afternoon feeling strangely mortal.

In those first days and weeks, sitting in my backyard, it was too soon to think about what I remembered; too soon to wonder about what I’d forgotten. It was enough to sit outside in the sun and begin to find my way back to the uneventful.

For a long time, my involvement with hospice was not just work, it was a calling. Not a religious call, although one can’t do the work without a deep sense of the mystery that surrounds the dying. Rather, it was the thing I did that made me feel most alive.

In order to be with the dying, I found it necessary to call upon everything: weeks I had spent at sea on ships with men whose language I did not understand, the arrivals in new ports at dawn and the departures in the dead of night when the heaviness of sleep lay over the harbour like a fog; the grain
elevators where my brother shot squab and trains pulled into the yards with their golden cargo. I needed the disorientation of falling in love, the births of my children, the dissolution of my marriage and the rediscovery of poetry, books I had read and forgotten, and a song, one night, rising from a burnt church; I needed the woman who slept on her son’s grave and the other woman who never visited the cemetery where her son was buried; the little funerals on my mother’s lawn and the funeral my brother never had. I needed to understand what it was to be alive before I could begin to comprehend what it might be like to die.

“For the sake of a single poem,” wrote Rilke, “you must see many cities, many people and things, you must understand animals, must feel how birds fly and know the gesture which small flowers make when they open in the morning. You must be able to think back to streets in unknown neighbourhoods, to unexpected encounters, and to partings you had long seen coming.”

I needed the war stories, including the one in which my mother was trapped in the rubble of a bombed-out house in London for thirty hours with the body of her mother, and other war stories about dancing all night in a ballroom where blackout curtains darkened the city like a closed eyelid and it was easy to fall in love with the boys who were leaving the next morning. I needed to understand how romance was sharpened by the proximity of death and how it was possible to survive when all one loved was lost.

It was necessary to put away all that I had learned in school, to forget the theories and techniques, the models of grief and the stages of recovery, in order to give them time
to turn into glance and gesture; to feel the work in my blood and not in my head. What I learned in school, to put it simply, was necessary but not particularly helpful. In the same way that poetry calls upon all that one knows and all that one has forgotten, so too does being in the presence of death. I knew I was in trouble when, having left one patient, I heard myself thinking, Next.

In 1985, death felt like a new frontier. Palliative care was just starting in Canada, with the first hospices opening in 1975 at St. Boniface Hospital in Winnipeg and at the Royal Victoria Hospital in Montreal. Victoria Hospice opened in 1980, and in those first years it felt as if we were renegades on the outskirts of the medical establishment. We had to learn the language of the dying and understand that the place they inhabited was a new world, a place we could never fully enter. “We had to be explorers,” says counsellor Elizabeth Causton, “willing to go into uncharted areas, to be surprised by what was around the next bend.” We brought our humanity and our eccentricities to the work. And sometimes we brought our own brand of black humour. Called to the home of Harry Tether, a ninety-year-old man who was very close to death, my friend Heather Fox thought, when she saw him lying still in his bed, that he had died before the team arrived. She sat with him for a while and then quietly said, “You know, if I had married you, my name would be Heather Tether.” Within a minute or so his shoulders began to shake and he started to laugh and ended up not dying that day after all.

We never knew what a visit would bring or what would
be needed. We just went, as the saying goes, with the flow. On a visit to a First Nations man with leukemia who had been in pain for hours, the team arrived and before they could do anything, he asked his wife, “Have you shown them the smokehouse?” His wife, startled, said no, but agreed to take the two women outside to see the fish smoking in the shed. When they returned to the living room, he looked at them and then at his wife and said, “You didn’t leave them in long enough, they’re still white!” They all laughed and for the briefest moment he was a man with a sense of humour and not just a man dying of a devastating illness.

For a long time the intensity and immediacy of my encounters with the dying and their families made working with death a kind of seduction. Small talk fell away, each visit was intimate; the work was unpredictable, mysterious, difficult and wondrous. When people found out what I did for a living, the response was inevitably something along the lines of, “I could never do that!” and even though I would never admit to it, to be seen doing something others couldn’t even imagine doing pleased me. I felt as if I belonged to a secret society. The work felt important. I was not an angel—none of us were—but damn, it was hard to imagine what else I might do. The heartbreak and grace, despair and fear, the moments of synchronicity and wonder placed all of us—the dying and the living—at the heart of the human story. What could be more seductive than that? And yet I felt increasingly as if I was walking with ghosts, wandering the dark corridors—pinned somewhere between commitment and wariness, between feeling fully alive and profoundly exhausted.

Caught between the mechanics of dying and the mystery
of death, what stories can I tell you about my travels through these lands? To be employed to help people die is a kind of aberration, a deviation from the way things used to be done, when the dying were cared for at home by family members and the body was laid out and washed by the local women; when the trajectory from being alive to being dead was a more visible one and a death set in motion a chain reaction in the kitchens of mourners, who arrived with piping hot dishes on the doorstep and matter-of-fact offers of help to mow the lawn or walk the dog or take the kids to their swimming lessons. This is not to take away from the skill and compassion of the people who care for the dying and the dead, but to wonder what it means for us all when the last hands to touch us will most likely be those of a stranger. And to wonder, as well, what it means when the sheer volume of death encountered by those who do the work makes the job comparable to working in a war zone.

The language of vicarious traumatization is useless.
The Handbook on Self-Care
says three things will help: escape, rest and play. Not a lot of room in that, says my friend Miriam, “for subtle agony or unwished-for blessings, for sanctity and profanity. Not a lot of room to describe the kind of sex we have after bathing the dead or being present to the revulsion of vomit, blood, rot.” Every death I saw was a kind of dress rehearsal. When somebody my age was dying, I looked for those same symptoms in myself. I developed a kind of catastrophic thinking: the smallest symptom was easily interpreted as a death sentence. I would go through periods of visiting my doctor more regularly, only to have him smile and ask, “What body part are we cutting off today?”
Twenty-two years ago, when I moved into the house I’m living in now, one of the first things I did was look around to see where a Red Cross bed would best fit on the main floor. It didn’t occur to me until years later that this might not be on the typical homeowner’s list of things to think about.

I find myself struggling to come up with answers, as if, having gone to the land of death and dying, I should have returned with something to say, some nugget of wisdom to ease fear or make the transition easier. Am I more or less afraid of death, having hung out with it backstage for years, you might wonder? Did the rehearsals ease the terror of what it will be like—to use a corny metaphor—to step out on opening night? Everybody has a death story. We are equally fascinated and horrified by the details; we tell our stories as if they can walk us through fear towards some kind of understanding.

I am no longer as innocent as I was. If anything, my fear has more shape now. I have more ways to describe and name the ways in which I could die. And yet, more than dying, I fear leaving: this earth, the people I love, the joys and struggles of my children that I will not be a part of. I fear being the cause of grief that at the same time I am unable to console. I fear a disease that will make me a stranger long before death finally arrives—like the man I met with a brain tumour who, having been gentle his whole life, became violent with his wife and unrecognizable to himself. As most people do, I fear becoming a burden or losing my mind, like another man I met with early-onset dementia who believed himself to be a fish. (On second thought, as tragic as that was, it would most likely amuse my children no end.) I fear the shock of
an initial diagnosis and all the uncertainty of what to do or not do; I fear that hope might blind me, like the thief it is, to whatever time remains. I think of my friend looking around her apartment and asking, “How do I leave this?” After years of being with the dying, I still have no answer for her.

When I was just starting out, I watched a woman with a death’s head insignia on the back of her fringed jacket cradle a dying boy in her lap and I wanted to be as fearless as she was. I wanted to walk into death’s house and put my feet up on death’s coffee table. In the end, even though I learned to walk towards death, I was never fearless. My anxieties had to do with the sounds and smells of dying, with the gasping breaths or the possibility of a sudden bleed—anxieties that belong to the living and not necessarily, as I came to see over time, to the dying.

“It is impossible to imagine our own death,” wrote Freud, “and whenever we attempt to do so, we can perceive that we are in fact still present as spectators.” What we see and feel at the bedside, as observers—the immensity of loss, the shutting down of the body, our own grief and helplessness—is not always the same for the dying, who in some miraculous way often appear to be spared the full knowledge of the reality of their death. I don’t know how this works, but over and over again I saw the dying in what appeared to be an altered state. Whereas the living see the past, the present and the future—see what is being lost, how it is being lost and what will no longer be—the perspective of the dying appears less expansive, as if, preparing to enter a narrow space, their focus becomes more immediate. It is a state not unlike that of marathon runners for whom endorphins kick in as they
near the end of a race, leaving some calm, some elated, some euphoric.

In his last hours, D. H. Lawrence, feeling as if he was floating away, is said to have cried out for Aldous Huxley to hold his ankles. On his deathbed, Aldous Huxley, no longer able to speak, scribbled a note to his wife asking for an intramuscular injection of LSD—while in the next room, unbeknownst to him, coverage of President John F. Kennedy’s assassination was being broadcast on the TV. While he was dying, Huxley’s wife whispered, “willingly and consciously you are going, willingly and consciously, and you are doing this beautifully—you are going toward the light—you are going toward a greater love. You are going toward Maria’s [Huxley’s first wife, who had died many years earlier] love with my love. You are going toward a greater love than you have ever known. You are going toward the best, the greatest love, and it is easy, it is so easy, and you are doing it so beautifully.” One hopes that Huxley’s last high was a mind-bending, psychedelic passage through the gates of perception. It would have been a real bummer, as the saying went in the sixties, if he ended up having a bad trip with his last hit of acid.