The Literature of Dying as a Shield Against Pain

Whenever my husband wants to get me a present, he buys me books about death. Actually, they are books about dying—the why and way, aftermath and rituals—around mortality because no one alive is in a position to write about being dead.

I have lived with a fear of death since childhood, one so virulent I could make myself feel as if that final moment were only seconds away. I wouldn’t blame anyone for thinking my husband’s gifts are cruel, but they are not. One of the most recent books he gave me was Kevin Toolis’ My Father’s Wake: How the Irish Teach Us to Live, Love, and Die. Set in the remote Irish village of his youth, Toolis has returned home for the dying and wake of his father. “The watchers in the bedroom…,” he observes, “were by their presence already girding themselves for their own deaths. The wake, among the oldest rites of humanity, was the best of the armour [sic] we would ever have.”

Toolis was a death hunter. As a journalist he covered stories about terrorism, disease, war, and other violence. He took pride in his ability to draw out the stories of those the deceased left behind. But he wasn’t there to heal the storyteller. “I had searched their dozens and dozens of destroyed lives for a shield to protect me from the wound of sudden death.”

I too am a death hunter, but I am not an adventurer. My shield is made of the books my husband gives me. Caitlin Doughty is the director of a funeral home and sought out the death rituals of other cultures to deepen her work. In her resulting book, From Here to Eternity: Traveling the World to Find the Good Death, she writes, “You may be someone who experiences real fear and anxiety around death, but you are here.” These words feel like a pat on my head. My husband, who never reads the books he gives me, thinks I am very brave.

I was around five or six when I woke up one morning with the realization that I was going to die. This is the way of all children, I imagine. “When you are a child, no one tells you that you are going to die. You have to work it out for yourself,” Maggie O’Farrell writes in her book I Am, I Am: Seventeen Brushes with Death. For her, that realization came at age five: “I knew, in that moment, and perhaps for the first time, that I would one day die, that at some point there would be nothing left of me, my mittens, my breathing, my curls, my hat.” My own sudden awareness of death made me angry. What were my parents thinking, creating me knowing that someday I would die? And I would never not know I was going to die. So began my terror of my eventual non-existence.

What does that terror feel like in my body? It feels like being chased by a black shadow you can’t outrun because the shadow is inside you. But the adrenaline keeps pumping. Fight or flight. You can’t box a shadow, so you run—into the closet, under the bedclothes, to a different room. Never very far because there’s no point. Eventually, the shadow retreats on its own, waiting to reemerge when you let your guard down. In her book On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families, Elisabeth Kubler-Ross writes, “We cannot look at the sun all the time, we cannot face death all the time.” I tell this to one of my daughters while I keep her company as she curls into her own fear. I wonder if she is mad at me for birthing her only so that she, too, will die someday.

In my thirties, after bearing three children, death’s scythe was dulled. There were too many other heartbeats to care for. But in 2000, my younger daughter was diagnosed with Ewing’s sarcoma and I heard death’s blade against the strop. I spent my days at the Memorial Sloan-Kettering Cancer Center where mortality lay in hospital beds and wheelchairs—behind closed doors, in the hallway, in MRI tubes, turning a face to the sun. Hades gave my daughter a pass, leaving without even apologizing for the terror he had caused.

To regain my equilibrium, I began writing about what it had been like to be a mother during that time, to track my reactions and how the experience transformed me. My writings became a book, Motherhood Exaggerated. It didn’t take my fear of death away, but it gave me courage to talk about it. I wrote Motherhood Exaggerated in solitude, eager for it to be read by unseen eyes turning pages with fingers I would never know. I hadn’t thought about the readings I would give, the public nature of what I had done.

What happens when you read and share narratives of illness? The listener or reader says, “Let me tell you my story.” And so, I became a receiver of stories about sickness and death and grief. I couldn’t run. I couldn’t hear about a ruptured esophagus or hemorrhage or brain tumor and click on Google or open my Merck Manual as soon as I got home to assuage my own fears. From listening, I went to actively drawing out the narratives that are the hardest to tell. At Memorial Sloan-Kettering I facilitate the stories of cancer patients. In writing workshops, I am the receptacle for stories about Crohn’s and Colitis, diabetes, Multiple Sclerosis, ALS, Parkinson’s, chronic pain, depression, heart disease, heartache, suicide, the death of a child, a spouse, a parent. I have experienced the death of some of these very storytellers.

The books my husband brings me have become my companions. Just as having a child with cancer made me thirsty for books that told similar stories about mothers and imperiled children, living with a constant awareness of death and dying makes me want to gain insight from others. Kerry Egan is a hospice chaplain who, in her book On Living, wrote about being a “story holder” for the dying. The stories are often the ones that have never been told—out of shame or embarrassment. They are the earth-shattering, knock-you-out-of-your-orbit ones. We all have them. For Kerry, these stories transform her. “I don’t know if listening to other people’s life stories as they die can make you wise, but I do know that it can heal your soul.”

“Death is a whisper in the Anglo-Saxon world,” Toolis writes. “Intuitively we feel we should dim the lights, lower our voices, draw the screens.” My grandparents died within that silence. I don’t know which, or if any, of their children were present. There are no open caskets at Jewish funerals, so I never saw their bodies, nor did I imagine why I would want to.

It wasn’t until I was thirty, after my mother’s death for which I was not present, that I began to want to witness a dying, to catch death in action. My mother died in the hospital where she had gone once again to have her lungs drained of the fluid that had collected there because of metastasized breast cancer. The morning of the procedure, she refused treatment. Death came a few hours later, not enough time for me to arrive from 200 miles away. At first, I felt no regret. I even gained strength thinking that if my mother could go through a dying, then so could I. But by not witnessing the becoming dead part, I became less certain. “But even on his deathbed,” Toolis writes about his father’s death, “Sonny was still my teacher. In those final days he was showing his children, and his community, the last parental lesson of all. How to die.” There was another option for my mother’s death, to drain her lungs this time but schedule her death by suffocation for a day when we could all be gathered. But did she owe us that?

The first dead body I saw was at the wake for my Irish Catholic father-in-law. I stayed in the back of the room and couldn’t stop thinking that Jack was going to get up at any minute and flash his smile and say just kidding. The first death that I was present for was my mother’s sister. She had had a massive brain hemorrhage the day before; although her heart didn’t know it, she was already dead when I arrived. The only clue to her cardiac death was the changing color of her skin. Hers was the first dead body I touched. She had not yet cooled.

Over five years ago, my father began actively dying from Alzheimer’s disease. His descent happened quickly. A fall, rehab, assisted living, hospice. His second day in hospice, I travelled to see him. I can’t say how aware he was, but his body was still active, his eyes open, his head turning toward sound, particularly the Shabbat songs my sister and I sang on Friday evening. By the second day, he had calmed, mostly because of the Haldol, Morphine, and Ativan. But then, true to the mythology of dying, he suddenly woke, more lucid than he had been in weeks. Windows into his eyes opened. I had, I knew, only a limited time to look through them. What do you say to the person who raised you, whom you will never be able to talk to again? In this moment of such significance, what came out was banal. I told him I loved him. I thanked him for loving me and my children. I told him how beautiful he was. I placed my forehead against his and then stepped away. I went back to my home.

The windows closed, but my father still lived. The next day I wondered what I was doing so far away. I returned to keep vigil with his wife. I watched my father breathe—shallower and shallower. I held his hand. Again, I placed my forehead against his. I chatted with hospice workers. It didn’t matter what I did. I was waiting to witness a death, to accompany my father as far as I could go.

The day was closing. My father’s wife was exhausted. She couldn’t remain any longer. She did not want to witness the death, nor did she think he wanted us to be there for his final exhalation. We left. The call telling us of his last breath came shortly after we arrived home. Perhaps his wife was right, but even though he was in no pain and without awareness, I felt I had abandoned him. I left him to die alone. I did not witness death’s arrival.

I felt less guilty about my defection when I read forensic anthropologist Sue Black’s ruminations on the death of her mother, for which she was absent. In All That Remains: A Life in Death, she writes that “it can be harder than we think to be with someone when they die. You can maintain a round-the-clock vigil at the bedside of a dying loved one only for them to breathe their last when you are grabbing a couple of hours’ rest or have just popped out for a cup of coffee.”

There was no viewing of my father’s body. It was taken to the funeral home and lay on the other side of the wall of the casket showroom where we wandered among the funeral world’s versions of horse-drawn carts, Hondas, Jeeps, Porches, Ferraris, and Rolls Royces. I didn’t know the person who washed his body per Jewish tradition or stayed with it until the funeral.

“In America, where I live,” Caitlin Doughty writes, “death has been big business since the turn of the century. A century has proven the perfect amount of time for its citizens to forget what funerals once were; family- and community-run affairs.” About the funeral industry, she says, “If we can be called best at anything, it would be at keeping our grieving families separated from the dead.”

I can’t blame the funeral industry directly for the distance I felt from my father and his body. We were asked by the funeral home if we wanted to wash him or stay with him per Jewish custom. Or maybe they said something like “You don’t want to…do you?” Or “I assume you’d like us to…” Uncertain of my own motivations, including whether I wanted to make a statement about my Jewishness, and afraid to make others uncomfortable by behaving outside the norm, I left my father’s body in the hands of others.

For months afterward, I read my synagogue’s newsletter and the ubiquitous appeals for volunteers to join its Chevrah Kadisha. A Chevra Kadisha is a group of laypeople that oversees the rites and rituals performed for the deceased, and I thought about what it would be like to attend to the dead. I wondered if what Toolis says in My Father’s Wake is true: “It is easier to live with death close than to live with the emptiness of denial.” Apparently, I am still in denial. My curiosity ebbed less than a year later.

I have come close to dying only once that I know of—the result of hemorrhaging after the birth of my twins. When I turned to my husband, right before I lost consciousness, to ask him if I was going to die, my feelings were a tea of sorrow, confusion, and concession. Surprisingly, I had little fear. There was no room for it. Like many people, though, I have felt the breath of death many times. “There is nothing unique or special in the near-death experience,” O’Farrell writes. “They are not rare; everyone, I would mention, has had them, at one time or another, perhaps without even realizing it.” Was death standing next to me every time I caught my heel on a staircase, in the riptides I have found myself in, or the time coming home from work in a snowstorm and my car did a double 360 on the icy highway, and I was saved only by the fact that, for those fifteen seconds, there were no cars in front of, beside, or behind me?

This constant nearness of death may be the point of O’Farrell’s book. As I made my way through her seventeen brushes with mortality, I could see its ubiquity. Death is as routine as checking your email, brushing your teeth, singing lullabies to your children. Halfway through I Am, I Am the brushes, although different in the details, lost their uniqueness. I went from gasping at O’Farrell’s misfortunes to trying to figure out what she was doing wrong to cause all these crises so I could pretend they couldn’t happen to me, to realizing that she is all of us. To live means being in the company of death. Or, as

Nina Riggs says in The Bright Hour: A Memoir of Living and Dying, “…living with a terminal illness is like walking on a tightrope over an insanely scary abyss. But that living without disease is also like walking over an insanely scary abyss, only with some fog or cloud obscuring the depths a bit more—sometimes the wind blowing it off a little, and sometimes a nice dense cover.”

Do all these stories help? Do they make me fear less? Sometimes, like right now, immersed in the literature of death, I am relaxed. But this is not a course I can receive an A in and be fear-free for life. I require many inoculations. Like the flu, the strain of my fear changes.

My fear comes in cycles, tied, not surprisingly, to separation. The tide rolls in when I leave my mother to go to nursery and grade school. It comes in further when depression draws her away. The water recedes as she regains health, and I find attachments in peers and teachers, like my beloved flute teacher Mrs. Porter. When I leave for college, I am caught in the inflowing current. I hold the tide steady as I begin attaching myself to my husband. It recedes when we have children. And then it drowns me while my daughter is ill. Her survival becomes more certain and it ebbs. Now it’s my children’s turn to leave for college and the waters reach my neck. I staunch its rising by learning there is so much more in life I can attach myself to, like my writing and teaching. But I was surprised this year when I turned sixty-five and the waters rose like a full moon tide. More and more bodies of family and friends are failing. I went back to a habit I developed as a young child of calculating the percentage of my life I had left based on a death age of ninety-two, a number chosen only because I liked the sound of it. Sixty-five is 71% of ninety-two; that means 29% remains. Death is not a whisper right now, but I am not ready to take comfort in what Atul Gawande wrote about in his book Being Mortal: “The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid being so demented or dissipated or subjugated that who you are becomes disconnected from who you were or who you used to be.” Of course, I don’t want to be any of these things, but mostly, in my current state of good health, I don’t want to be dead.

In the one and nearly two deaths I saw, I felt none of what Kubler-Ross describes: “Watching a peaceful death of a human being reminds me of a falling star; one of a million lights in a vast sky that flares up for a brief moment.” In Natural Causes, Barbara Ehrenreich also offers a beautiful image to meditate on. She writes, “You can think of death bitterly or with resignation, as a tragic interruption of your life…Or, more realistically, you can think of life as an interruption of an eternity of personal nonexistence and seize it as a brief opportunity to observe and interact with the living, ever surprising the world around it.” I love the poetry and the metaphors these two women use, but their words do not soothe me.

I wonder if, as we try to confront death and dying, to search for meaning and the best or right way to cease our existence, we are replacing the whisper with a waltz—all grace and flowing gowns and gorgeous music. I like Toolis’ image better, that “death sounds like a whisper in the West because we close our eyes and put our hands over our ears to mask the sound of others’ keening. But on the day death comes for you, the sound in your ears will be louder than thunder.”

We can’t choose how we will die. We may be presented with the option to enter hospice, to have our pain morphined away, our lips moistened with balm, our hands held, but that is not the whole dying part. That begins before hospice, when death begins its violent intrusions—causes pain and suffering, ugliness and despair. That is the part that we can’t opt out of. As Gawande writes in Being Mortal, “It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life.”

There are so many ways to die. The most fearsome prayer in the Rosh Hashanah and Yom Kippur liturgy is the Unitaneh Tokef. Rosh Hashanah is the day our future is inscribed in the Book of Life; Yom Kippur the day it is sealed after spending the previous ten days in self-reflection and atonement in the hope of influencing that final decree. The Unitaneh Tokef asks whether we shall live and how we shall live, whether we shall die and how we shall die.

“Who shall perish by water and who by fire,

Who by sword and who by wild beast,

Who by famine and who by thirst

Who by earthquake and who by plague,

Who by strangulation and who by stoning…”

Perhaps a line should be added, “Who in hospice, who in no pain; Who surrounded by loved ones; who according to one’s own plans.” But there is no such line. We are forced to see the violence of death. I think of my mother’s drowning lungs, my father’s loss of mind and dignity, the excruciating pain my aunt must have suffered when her brain was swamped by blood. I was raised on the Holocaust movie Night and Fog, images of Hiroshima and Nagasaki, on “duck and cover” and canned foods in the basement that I knew would do nothing to keep the skin from melting off my body when the nuclear blast came. My influences are no different from those of the preceding generations and the ones that followed and will follow—AIDS, opioid addiction, mass shootings, always war, always someone saying I want what you have, natural disasters and disasters caused by our abuse of the earth.

Nowhere are death’s many guises more evident than

in Sue Black’s book All That Remains: A Life in Death: “In my experience, engaging with her [death] is both fascinating and compelling, and never dull, but she is complex and sometimes wonderfully unpredictable.” Her book would make a devotee of the television show CSI ecstatic. Her job is to examine the remains of people who have died through murder, war, dismemberment, accident, and natural disasters, and to create a human life out of her lifeless materials. Black is a realist. About her own eventual death, she writes, “I am only going to experience it once, after all. I want to recognize death, to hear her coming, to see her, to touch her, smell her and taste her; to undergo the assault on all of my senses and, in my last moments, to understand her as completely as humanly possible. This is the one event that my life has always been leading up to, and I don’t want to miss anything by not having a front-row seat.”

Each in their own way, books about death and dying refuse to hide the final stages of illness behind hospital curtains and funeral home doors. Some focus on achieving what I call “pretty” deaths, where people fade away in pain-managed comfort surrounded by loved ones. The perfect way to die if circumstances allow. Others don’t shy away from the harder reality of the ways we die, but these books, too, are like two hands placed on either side of my head insisting that I look straight on at what will be our future.

But of all the books I have read so far*, Toolis’ My Father’s Wake is the one I keep returning to. In part, it is because among the advice he offers at the end is this: “If you are a relative or friend and care enough, be there for the dying days. There is nothing else in our life that will probably ever be as important. More real. Be there for the hour of death and remember to pray for your own in that moment.” We should be there for the dying and the death not only because we are performing a kindness for someone else, but because we are teaching ourselves how o die. Perhaps if I learn that lesson, I won’t be so afraid to be dead.

My husband has brought home a new book for me.

Its title is Furnishing Eternity: A Father, a Son, a Coffin, and a Measure of Life by David Giffels. The son has the idea to build his own coffin, really a way of spending time with his father who is a master craftsman. In the process of building the casket, he and his son explore their relationship, the losses they have experienced, and their mortality. I don’t imagine I will be building my own coffin, although, like Giffels, I spent many hours with my father in his woodshop. But I do know that, when I die, I would like to be buried according to Jewish custom—to return to the earth in a simple pine box, no embalming, wrapped in a shroud. I thank my books and all the stories that have been poured into me for helping me to make at least this one decision, this one acknowledgement, that I am going to die.

*Among the authors not referenced here are Dr. Paul Kalinithi, Dr. Sherwin Nuland, Joan Didion, Marion Coutts, C.S. Lewis, Susan Sontag, Mary Roach, Jessica Mitford, Donald Hall,

Anatole Broyard, Simone de Beauvoir, Audre Lorde, Eve Joseph,

Mark Doty, Helen MacDonald, Thicht Naht Hahn