Authors: Eve Joseph
In one of the rooms facing the courtyard, cherry blossoms blew in through an open window and fell on a woman, in her early thirties, who was sleeping. I was in the room with her husband, whom I had met only moments before, when he collapsed in my arms and said, “If there is a God and this is His plan, how can I ever believe in that God again? And if there is no God, how can I live?” I was new to the work and had no answer for him. I hadn’t even begun to formulate the questions. I remember looking at her pale skin and black hair and thinking she looked like Snow White in a Red Cross bed. Her window, like all the others on the unit, was kept slightly open to let the spirit leave.
To “begin,” from the Old English
, means “to open, open up.” My early days and weeks were spent acclimatizing to the idea of being around the dying. I was struck by the ordinariness of it all: nurses came and went casually from patients’ rooms, doctors joked easily with each other, undertakers—their minivans idling at the back door—appeared like specialized delivery men when called. The smells and sounds of death were a kind of muzak—not loud but always in the background. A faint sweetness hung in the air: a tinge of marigold and fetid water. The few people who were still able to rise from their beds were sinew thin, and the ones in their rooms were often short days away from death. I hadn’t been there very long when I noticed a smell of rot coming from one of the rooms. Over the next few days I learned that the patient in that particular room was a young
woman with a fungating breast tumour that was eating its way through her flesh. I recoiled inside when I heard this and felt grateful I didn’t have to go into that room. I did not yet know how diabolical and inventive cancer could be. I knew, as we all do, that people died; I had just never given much thought to how they did it.
Cherry trees blossom in February in Victoria in a kind of mockery of winter. There were times, on my way home from a shift, when it seemed to me as if the seasons were accelerating for those who would not see the coming spring.
God is not omnipotent, says Rabbi Harold Kushner. In times of great difficulty, He weeps with us. That might be so, but for the man who fell into my arms as his wife lay dying in the Bay Pavilion and I stood in the room, trying to make myself small, as he begged her not to go, God’s tears were not going to cut it. We need consolation, says the good rabbi, not answers. “Why?” cried the man. “Why?” To which we all waited silently for a few minutes, as if there might be an answer forthcoming from somewhere. An explanation, at least.
I spent hours, in those first weeks and months, with the woman who hired me. In her early sixties, Jo had thick white hair and an open, frank face that creased easily with amusement. She wore cotton dresses and sandals and valued instinct over protocol. In the mid-1980s, hospice was still relatively new; there was a sense of excitement and possibility, and we all felt it. Jo’s shelves were filled with books by Carl Jung, Elisabeth Kübler-Ross, Joseph Campbell, Stephen
Levine, Ram Dass, J. William Worden, Therese A. Rando and other volumes on psychological archetypes and mythology. She lent me
Words as Eggs
by Russell A. Lockhart with a seriousness that indicated the book held a key to unlocking the secrets of the dying. I couldn’t make heads or tails out of it. There were no set protocols yet; signs proclaiming that foul language or violence would not be tolerated were not yet posted on the walls of health care facilities, including hospice. There was still time to sit with patients who were frightened or restless, and although there was a waiting list to get into hospice, once patients were admitted, there was no pressure to move them to another facility if their dying was prolonged.
One of the first patients I met was a twenty-eight-year-old woman with a rare form of bone cancer. In the weeks preceding her death, the bones of her rib cage were so brittle that one or two broke whenever she rolled over. I was horrified to learn that our bones could snap like twigs.
At birth, a newborn baby has approximately three hundred bones, while on average an adult has two hundred and six. Our bones fuse as we grow; we are building our scaffolding without even knowing it. The twenty-four long, curved bones of our rib cage form a structure that shelters the heart, lungs, liver and spleen. Like exotic birds, we live within the safety of our bony cages.
I talked to Jo about how distressed I felt, and as we walked beneath a canopy of chestnut trees in front of the hospice unit, she talked to me about what it might be like to be trapped inside a body that was breaking apart. “Each bone breaking,” she said, “is a possible opening.” In the days preceding death, I watched as Jo and the young woman
talked about how the cage cracking was the only way she could fly free. Each bone that snapped made the doorway a little wider. For her immediate pain, the young woman was on a morphine drip with breakthrough doses given subcutaneously through a butterfly in her upper arm. She used morphine to get on top of the pain and metaphor to try to understand it.
There is such a fine line between imposing meaning and allowing it to surface naturally. Jo had a fearless mind. I saw, in those hours I spent watching and listening, how she used language as a key to unlock the dying process. I was meeting the dying, but it was death itself I was being introduced to. A figure, a presence, a seduction and a terror. Sometimes merciful, sometimes brutal. I was slowly learning a new language. Slowly learning to see in new ways. What Jo offered as possibility, the young dying woman embraced as her own. I was unsure, even if I had a key, what door it might open and what I would possibly do if it did.
Traditionally, healers often lived on the outskirts of the village. Shamans, prophets, tricksters, magicians, holy men, eccentrics, crazy men and women all had specific roles to play as mediators between the living and the dead. There were times, over the years, when I thought that’s what we needed: huts on the edge of the city where people would approach with stories, scraps of memory, a goat, a sack of potatoes, a basket of eggs, a chicken. Places where people like Jo would be revered and feared and the dead could go about their business undisturbed.
The Bay Pavilion was torn down not long after I began working there. The hospice that replaced it is located on the third and fourth floors of an old maternity hospital not far from downtown Victoria. In 1979, the year United Nations Secretary Kurt Waldheim proclaimed as the Year of the Child, I gave birth to my first child in one of the rooms I would help people die in six years later. My memories of life in that room are stronger than those of death. I remember the sensation of falling in love with my new daughter: the quick jerk of it, the way one sometimes catches oneself from falling backwards into sleep to keep from disappearing into the void.
We die alone more than we used to. We rely more on strangers. Good people, with good intentions, who escort us out. We often die in beds that are not our own in rooms with no family photos on the walls; no parlour in which to pay our respects. Far from the caves, huts, hovels and rooms in family homes that we once arrived in and departed from, birth and death have become estranged from each other.
There are seventeen beds on the new unit, seven of them designated for patients with complex symptoms not adequately controlled at home, nine allocated for patients with “weeks to short months” to live, and one for respite care that can be used by patients in the community for up to one week. The average stay, from the time of admission to death, is less than three weeks. When you step out of the elevator on the third floor, you pass a small table with fresh flowers to the left and a large hand-embroidered memorial quilt on the wall above it. On the right is a small glass window containing objects from the Hospice Thrift Shop—jewellery, scarves, pretty vases and dishes, clothes and purses. A friend
who works on the hospice unit says that people like to go “shopping” there. She has seen patients buy a necklace for a daughter or granddaughter and others who pick up small mementoes for the person who is dying. It is, my friend says, a small window of normal.
More than three hundred volunteers with various skills work at hospice. Some sing, some play piano in the family lounge, some know reiki and therapeutic touch; many of them make tea and sit with the dying in their rooms. For patients who wish to leave behind some kind of record of their lives, there are volunteers trained to record those stories and memories onto audio CDs. They come from all walks of life: they are doctors, teachers, filmmakers, waitresses, beauticians, dog trainers, painters and potters, CEOs, cops and widows. Some are still working, some retired. There aren’t a lot of young volunteers; this is not their country yet.
A man dying of leukemia once asked me if I did anything useful. In his last months he had built a farmer’s market on his land so that his wife and four sons would be able to support themselves after his death. Without thinking, I answered that I baked loaves. It was a lie, but it became a fortuitous lie. He told me to bring my loaves to the market and said his family would keep half the money; the other half was mine. The first month after his death, I decided I’d do what I’d told him and made five hundred dollars selling banana, chocolate, blueberry, pumpkin, apple and zucchini loaves. I followed recipes, I made them up. I baked loaves at midnight, wrapped them in tin foil with masking tape labels, and delivered them to the market before going to work in the morning. A few years later, when my marriage ended,
I supported myself and my children with money from the loaves I sold at the man’s market.
Sometimes, when I visited patients at home, I’d see one of my loaves wrapped in silver on the kitchen counter. Counselling isn’t tangible; it’s often difficult to know what, if anything, helps. A slice of chocolate bread with butter melted on it, on the other hand, was, on occasion, the best thing going.
To be with the dying is to wade into mystery. On my first visit as a counsellor with the palliative response team—a team comprising a nurse and a counsellor who provide crisis intervention in patients’ homes—an emaciated, naked woman stood on the dresser beside her bed and flung a bottle of perfume at my head; she thought she was in the war and her arsenal consisted of little coloured bottles of eau de toilette. She had captured the ridge and was there for the long haul. Two injections of Haldol by the nurse eventually cleared the woman’s delusions, but what helped me to understand what the woman was seeing on that ridge and to talk her down into the safety of her bed—the “bunker” we called it—were my mother’s stories of the war and its visceral presence in our lives. Whenever a thunderstorm rolled in over the North Shore Mountains, my mother dove under her bed and plugged her ears until the storm passed and I knelt down to give her the all-clear.
The origins of
are lofty. The goddess Athena, disguised as Odysseus’s trusted friend Mentor, guided Telemachus in search of his father in the
The name is proverbial for a faithful and wise adviser. My mentor just happened to have the insignia of a winged death’s head skull on the back of her jacket.
Shortly after I started working at hospice, I received a call from a cousin whose six-year-old son was dying of leukemia, asking me to help the family. I was thirty-two years old and new to the work, and I was afraid people would look to me as the expert when, in reality, I felt anxious and unprepared. When I arrived at the house, I was surprised by the laughter I heard coming from the living room and by people milling about without any apparent distress. Eli was lying on a couch beneath a brightly coloured blanket he and his mom had picked up in Tijuana on their last visit to a laetrile clinic in Mexico. His collection of stuffed monkeys made of old grey and white socks with brightly stitched red mouths and button eyes lay draped in various positions around him. By the time I arrived, he was in a coma and breathing irregularly. With his steroids discontinued, his face, which had become round like a full moon, was slowly returning to its natural shape; the closer he got to death, the more he looked like himself. Unsure what to do, I busied myself clearing dishes and making coffee. His breaths were wet and my chest tightened with each one he took.
Around midnight a motorcycle pulled up in front of the house and Eli’s auntie pushed open the front door and shook
herself off like a wet dog in the hallway. Mona was a junkie and a biker. The last time I’d seen her, she’d stolen forty dollars out of my wallet while I was sleeping. She grew up on reserve in the Squamish Valley in the shadow of the Chief, the second-largest rock in the world. Legend has it that when a piece of granite breaks off and rolls like thunder down the left side of this rock, a death will follow. Mona wore leather pants and a buckskin jacket and had the word
tattooed in blue ink across the knuckles of her right hand and
tattooed across the left. In the past she’d pierced her ears the old way, by numbing them with ice cubes and passing a sewing needle, heated over a lighter, through her earlobes and then pulling thread through to keep the holes open.
I watched as she walked down the hallway and up the three carpeted steps to where Eli was lying. She removed the pillow beneath his head, repositioned a couple of monkeys and settled herself down with his head on her lap. She cleaned inside his mouth with a peppermint mouth swab and cooed to him and rocked him and cradled him and loved him and did everything I was afraid to do. She made herself at home in death’s house and put her feet up on death’s coffee table. “You go, baby,” she said. “Whenever you’re ready, you just go. They’re here. Everyone, they’re all waiting for you.”
Shortly before he died, there was a loud crack as if a piece of granite had broken off a gigantic rock. Moments before, I had gone to sit in the kitchen as I didn’t want my anxiety to hold him back. Eli’s First Nations uncle, Len, gathered people in a circle around his body to sing a farewell song; his Christian grandmother sang “Amazing Grace.” When he finished singing, Len put down his drum and told us that the
crack we had heard meant that the heavens had opened and Eli was in the arms of the Creator. An hour later, when the funeral home came, Mona lifted his body off the couch and gently placed him, wrapped in his blanket, on the gurney.