Parting Ways: New Rituals and Celebrations of Life's Passing

Prologue

I opened our front door to welcome a procession of family and friends to my mother’s wake on a brilliant winter afternoon in February 2002. Her last wish was to die at home in San Dimas, our quiet suburban oasis near Los Angeles. The doctors predicted she had seven days or less to live following her choice to end intravenous feeding. That decision came as a surprise to me on the evening of our homecoming from a demoralizing stay in the hospital.

And so the countdown began on a Monday.

Tuesday, Day Two, hospice arrived.

It was Day Three when my mother, known to everyone else as Linda Carson, lay wide awake for her wake. She basked in the spotlight on a bed surrounded by not mourners, but revelers as the ambiance in our home turned from quiet pain to a quickening pulse of celebration. Friends regaled her with stories of old. Her laughter, rising in cadence, egged them on. I’d never felt so proud of her than at that moment. She radiated a picture of dignity and grace in motion.

Her spirit transcended the physical frailties brought on by the cancer. Her blue eyes shone through her pallid, porcelain face. She wore no wig, sponged no makeup or blush on her sharp cheekbones and slender nose. We’d just celebrated her fifty-fourth birthday, and I was a few months shy of my twenty-seventh, the same age as she was when giving birth to me. I sensed a distinct role reversal occur as she labored out of life. My nineteen-year-old brother, Ryan, with his spiky auburn hair and chest puffed out, stood like a guard at the head of her bed. I knew he too felt an instinctual need to watch over her.

No opening speeches, such as We are gathered here today to honor the life of Linda Carson, commenced the wake. In the absence of cultural cues and modern-day deathbed customs, we devised our own. A rocking chair at her bedside became the designated speaker’s chair. Customarily, ancient wakes took place in the living room, the home’s inner sanctum, which was then called the parlor but renamed in the twentieth century to clear its reputation as the place reserved to honor and lay out the dead. In the early years of the twenty-first century, such a public ceremony marking this final passage at home was rare, but on the rise. Mom specifically requested no wake or open-casket funeral post-death at a funeral home. Instead, we invited everyone for the ceremonial farewell a bit early. We figured she could participate in the reunions, reminiscences, and festivities. Mom never missed a party.

Many of my father’s friends commented on how much I looked just like my mother, but that’s because they knew her when she was my age. Back then Mom rocked long fiery-red tresses that swept her hip-huggers on a twenty-five-inch waist.

Luckily, I got her figure, I said, scooping blondish-brown tresses out of my face to wink at Mom. She and I both knew that more than just her physical qualities would live on in me.

And the smile, Mom said.

I looked around our living room as the faces of our friends from church, my childhood neighborhood, my mother’s friends from her Divorce Recovery Group and Parents Without Partners, relatives from my father’s side of the family, and her colleagues I’d known since my first steps, came into focus. Each person symbolized a collection of shared memories with my mother, and all together they formed a moving mosaic of her thirty-six years lived in America. I must admit, although she carried herself with an air of British sophistication from a bygone era, she’s a rebel survivor at her core. At eighteen years old, she emigrated alone from England with a one-way ticket to America. She left behind the old-world traditions to design the life she wished for in this country. Those instincts shunned our society’s norm to die furtively behind the closed doors of an institution.

I stood amidst the collective reminiscences with no unanswered questions, but that hard-won calm didn’t come without a struggle to map a new direction into life’s final frontier that led to this extraordinary finale.

Introduction

My mother’s living wake inspired an exploration to find other families involved in similar parting ways rituals. That day, we eclipsed her imminent death by bonding together to celebrate her life. The social gathering turned out to be preventive medicine for all the survivors left behind. Together we orchestrated the kind of deathbed experience that we Americans view as the ideal.

Eighty percent of Americans wish to die at home surrounded by family members, yet only 25 percent of the 2.4 million Americans who die every year do.¹ I realize a number of factors stamp out this possibility, but the most evident is that we don’t know any other way than death in the medical realm. U.S. Census data indicate that approximately 75 percent of all deaths occur in persons aged 65 and older and further show that only 6 percent of all deaths are from unnatural causes.² Surprisingly, the majority of Americans die of natural causes in old age, and those 65 and older continue to be the fastest-growing section of the population making up 13 percent.³

Yet death remains an institutionalized event.

This book explores individuals reinventing the role of family and community in death care to wrest control back from the white coats in hospitals and the black suits in funeral homes at the turn of the twenty-first century. As a journalist, I report stories about everyday people to portray the lived reality of a larger cultural trend happening in society. America is experiencing an irrevocable upward trend of families breaking free of the uniform, depersonalized, alienated death ways of our modern society with a new set of personalized rituals closely related to practices of pre-modern society when death was omnipresent and Americans died in the familiar comfort of home and relied on intimate communal bonds.

In the last half of the twentieth century, gerontologist Robert Butler concluded in the book Why Survive? Being Old in America, We’re so preoccupied with defending ourselves from the reality of death that we ignore the fact that human beings are alive until they are actually dead.

Well, not anymore.

Experts and demographers predict an end of life revolution much like the sex revolution when baby boomers dispelled the myths and half-truths surrounding the taboo of sex in America.⁴ When the baby boomers—the 75 million Americans born between 1946 and 1964—confront a new stage of life, societal shifts and cultural changes follow. Many of these individuals are approaching the last chapters of their parents’ lives and consequently colliding with the institutions that have governed end of life for a century. The baby boomer bulge will continue padding the senior population year after year, growing to one in five U.S. residents by 2030.⁵ Some of the baby boomers, like my mother and others in this book, are already trailblazing, and their passages are serving as cultural exemplars.

Since we often encounter discomfort in talking about death, I’ve taken on the task of aggregating a collection of family stories at this pivotal, creative, and innovative period⁶ around confronting death and funerals to add to our collective wisdom. I’ve been graciously invited into the intimate lives and living rooms of people from the East to West coasts to report a rich, diverse, and changing landscape of individuals gathering to toast, roast, sing, bequeath a legacy of life stories, and pay reverence to a life in the midst of death.

These rituals close the gap between the social and biological death by transforming this once-sequestered stage of life into a social, spiritual, and self-growth journey. In contrast to traditional ritual, powerful because it’s handed down through the generations, the power vested in these invented rituals is the authentic expression of the individual self and interpersonal relations that personalize a previously institutionalized occasion.

For example, the living funeral is a social gathering of family and friends to honor the dying person before death with illuminating eulogies, tributes, and lifetime achievement awards. The deathbed ceremonial farewell re-enchants a previously disenchanting stage of life. As the last breath nears, the individuals are now reassured their life will live on in the minds and hearts of their family and community. A new kind of end-of-life guide is recording life stories through interviews and assembling a legacy of memories in a life-story book to bequeath to the family. On that score, families are video recording an oral ethical will in a familial gathering set up for the dying person to pass on his or her values and life wisdom to the next generations.

The vigil, a post-death ritual of watching over the body in repose, is now transformed into a pre-death communal affair that creates a sacred space around the deathbed for familial prayers and songs to support the dying person laboring out of life. Death midwives and death doulas are recasting the deathbed scene like their birth midwife counterparts in the home-birthing movement of the 1970s. Midwives sought to return the communal and spiritual sides back to the personal experience of birthing, which they believed had become increasingly more medicalized as the woman became a patient in the modern-day institution.

Likewise, a death midwife empowers the family to reclaim the intimate final acts of ceremonially washing and preparing the body for a funeral in the home, thereby revising the tradition to call a funeral director to immediately usher the dead out of the living community for an institutionalized wake and funeral. This family-centered approach is often followed by a green burial, a new kind of internment connected to old world ways that forgoes embalming the body and instead simply wraps the body in a shroud or biodegradable pine box that is buried inconspicuously in a forest landscape without headstones.

We’ve seen some books that research and report on post-death rituals and many books on the various aspects of dying well, but there hasn’t been a practical guide yet that carves out a holistic path anchored in rituals that celebrate life while marking the whole passage from dying to death to mourning. Most of the books on dying and death come from the voices of the professionals because they are, for the most part, society’s guardians of this domain. This book is a synthesis of individual stories, voices of professionals, and my personal experiences around death to portray a living portrait of families and communities reshaping end of life. The book is organized into two parts: pre-death and dying rituals followed by post-death and mourning rituals. It’s an easy-access resource to be read in pieces based on where an individual or family is on the end-of-life journey.

Since most Americans are not afforded a dress rehearsal for their own dying and are often not present for long periods during the dying process of others,⁷ I’ve arranged the book to gradually immerse you deeper into the arcane realm of end of life with two related narratives.

The first narrative is a close-up lens on my familial experience living with dying and the driving forces and conditions that led us to create homespun rituals. My mother’s journey into life’s final frontier will provide a central road map and/or timeline on which to plot these new rituals. So at each new leg of our journey, I will pause to introduce a new ritual in the form of a chapter that widens the lens to explore the origins of the rite while demonstrating real-life application of this ritual practiced by a family and community. In the alternating chapters ahead, I will switch between the role of my mother’s primary caretaker and journalist focused on how these rituals provide a window into the cultural dynamics of how people make and remake their worlds around death historically and at present.⁸ I draw on interviews with sociologists, anthropologists, religious historians, doctors, nurses, clergy, and funeral directors to broaden and contextualize the scope.

I read in The Hour of Our Death, a vast study of death from the Middle Ages to the present day, about the need for established rituals at the end of life. Philippe Ariès, the author and social historian, writes, The transition from the calm and monotonous world of everyday reality to the inner world of feelings is not made spontaneously or without help. The distance between the languages is too great. In order to establish communication it is necessary to have an accepted code of behavior, a ritual.⁹

We live in a culturally porous country where religious and cultural rituals are borrowed and personalized. I’ve unearthed the roots of these traditions and found that many of us, unwittingly or intentionally, are reaching back into our past to domesticate death in America. Cultural lag is a term used by social scientists to describe the phenomenon of societies falling behind in dealing with new social problems that result from technological advances.¹⁰ Unfortunately, our social and personal responses failed to keep pace with the innovation of the twentieth century. The rapid influx of medical technology combined with urbanization moved death from the home to the institution. Hospitals, an outpost of science, have their own rituals for marking death. Sophisticated machines monitor biological functions such as heart rate and brain wave activity. Death has become calculable, predictable and efficient, but the scientists and machines squeeze out the human element like feelings and metaphysical questions about the nature of human life.¹¹ We are three, nearly four, generations removed from knowing how to be at the bedside of the dying. I’m not romanticizing the past, but should point it out as a frame of reference to explore the renaissance of family involvement in death care.

For the most part families don’t know what to do around the bedside because they’ve never seen anyone die before, said Dr. Diane Meier, director of both the Center to Advance Palliative Care and the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine in New York City.¹² Death is a stranger in our culture.

In preindustrialized societies, birth and death were essentially social affairs involving cultural rituals developed over centuries within the home and community.¹³ Death was a public ceremony, and the bedchamber was a community space entered freely.¹⁴ Dying alone is a fear that inflicts many people today, but back then was inconceivable. The presence of parents, children, friends, and neighbors was vital in the final moments.¹⁵ The generational wisdom to hold, support, and guide these rites of passage disappeared when hospitals acquired the processes of dying and birthing from the family in the 1920s. Death became the enemy to be conquered in these curative institutions. This widely held belief manufactured absurd regimes silencing all talk of death in the hospitals and protecting families from the patient’s final moments. The code of silence eventually spread out into society.¹⁶

The funeral industry flourished under these conditions as families called on the undertakers, now funeral directors, for swift body removal from the hospital for preparation and viewing in the funeral parlor, now funeral home. A familial affair for a millennium became a professional affair that disrupted the intimacy and emotions channeled through caring for our own dying and dead with our own hands in the familiar bosom of home.¹⁷ Death, once as regular in daily and family life as the changing seasons, became invisible in the twentieth century.¹⁸

The modern hospice movement started in the 1970s as an alternative to, but also backlash against the mechanical and impersonal death in an institution. Hospice is an interdisciplinary medical team focused on holistic, low-tech, comfort care in the patient’s home. The team guides the family and community on how to care for the needs of the dying patient at home. Today, hospice is a philosophy of care, not a place. America has seen an upward trend in the adoption of hospice at the turn of the twenty-first century from helping 158,000 Americans at the end of life in 1985 to 1.2 million in 2005 and rising to 1.5 million in 2009.¹⁹ The most recent hospice studies report that 41 percent of all deaths in America happen in the comforts of hospice and more than 68 percent of hospice patients die in the place they call home. Today more than 5,000 hospices help people nationwide, up from one in 1974.²⁰

America is emerging from the cultural lag of impersonally handling death. These new rituals have evolved from a constellation of cultural catalysts—the hospice and palliative care movement, religious pluralism, heightened individualism, the counterculture of the baby boom, the AIDS epidemic, and the revival of ancient rites. Funeral directors report a landmark shift in families taking control and individualizing the one-size-fits-all traditional service characterized by the body removal for an institutionalized wake and religious funeral.

The baby boomers rewrote the traditional vows of matrimony and moved weddings from the hallowed sanctuary of the church to the sacred gardens of their backyards or other grounds they deemed as holy. Interfaith marriages, divorce, and same-sex relationships became acceptable to the boomer cohort. They founded the New Age movement of spiritual awareness that strayed from institutionalized religion and popularized mega churches. The twelve steps, a recovery program for Alcoholics Anonymous, is now an acceptable model to guide personal growth journeys of all kinds in our society. Boomers initiated home offices, home schooling, and holistic wellness programs drawing on alternative Eastern medicine. The women’s movement devoured medical paternalism and seeded the marginal homebirth movement of the 1970s that altered the birthing practices to shift away from institutionalized standards and move toward nurturing choices and the individual experience. At the other end of the life cycle, we are now seeing the convergence of these values and movements shattering the silence around this once taboo subject and making death visibly fashionable in America.

PART ONE End-of-Life Celebrations and Pre-Death Rituals

ONE Her Choice: Two Paths Leading to the Same Destination

In the waning last year of the twentieth century, I followed my mother through the double glass doors of Kenneth Norris Cancer Hospital on the University of Southern California campus. The wilting figures seated in the lobby assaulted my senses. We’d entered a departure terminal for death. I choked back my horror and threw my arm around her instead of turning to run for the exit. She made many solo journeys in her life, but this wouldn’t be one of those.

Thanks for coming with me, my love, she said. Mom appeared vigorous as she reverberated the lobby with the rhythmic click of her high heels, which added a few inches to her nimble five-foot-two physique in a business suit and blond bob.

My mother’s gastrointestinal oncologist had summoned us late that afternoon. A nurse escorted us into a stark room. We sat in front of an oak desk. The week before Mom had returned home from this office repeating her death sentence—three to four months left to live. They gave no curative option after twelve arduous weeks of reconnaissance. The USC team only offered to palliate the symptoms.

The doctor swept in and sat behind the desk. She opened Mom’s flimsy medical file and launched into a scripted spiel about an experimental chemotherapy treatment that she thought could prolong my mother’s life. Skeptical, I interrupted the doctor’s speech about mixing two kinds of chemotherapies to test the toxicity levels in humans.

This seems unsafe, I said.

Denise, this may not help your mother, but her participation in the study will help save the lives of others, she said.

I winced at her casual tone.

My mother doesn’t want to be your guinea pig, I quipped.

The doctor moved to corner of the desk and placed her hand on my shoulder to gain pseudo-intimacy.

"With this experiment, we’re killing two birds with one stone; it’s a chemo for gastrointestinal and ovarian cancer, she said. It’s exactly what we need to treat your mother’s cancer."

I burned with anger, but I couldn’t stop the tears. My mother looked at me. I wasn’t the ideal pillar of support that I hoped to be for her.

We need to think about it, Mom said. My kids have already been through this with their father. My goal is to have quality not quantity of life.

EXTENDING LIFE OR PROLONGING DEATH IN THE TWENTIETH CENTURY

I remembered the first time Mom had uttered that string of words. It was the spring of 1987. I was just twelve years old. We walked side-by-side toward the elevator on the ninth floor of UCLA Medical Center. My father, Richard Carson, was a local by then on that floor. In the cancer unit, he appeared out of place. At just thirty-seven years old with a marathon runner’s body and a full head of thick, shiny black hair, he looked so invincible to me compared with other residents, who looked more like great-grandparents.

Mom had just visited his room. They had been divorced for five years, and he had remarried. Mom had little contact with my father during his illness, yet she felt it necessary to talk to him that evening when she came to pick me up from the hospital. I had been staying at a family residence, similar to a hotel, on the UCLA campus in Westwood for the weekend in order to visit Dad while he was undergoing aggressive daily radiation and chemotherapy.

She walked into the room to see a skeleton of the man she once called her husband. He’d lost a lot of weight since their marriage. His skin hung on his bones. He wore a white V-neck T-shirt and hospital pants. His bronze complexion was now tinged yellow, a sign of his failing liver. Shortly after his thirty-fifth birthday, they’d diagnosed him with colorectal cancer that spread to his liver.

Have you had a will drawn up? she asked.

Yes, he said.

Do you think you can write a letter to the kids, tell them about what your expectations of them are in the future, tell them about you? she asked. Especially for Ryan—he is still very young. Ryan, my younger brother, was four.

Dad didn’t respond.

Or even make a tape or video of yourself for them? she added.

Lin, I’m going to beat this, he said. His face twisted from the pain as he tried to sit up in his bed. They exchanged a few more words and then my Mom emerged and grabbed my hand. I looked up and saw tears in her eyes, but they disappeared before rolling down her face.

Did you have fun, my love? she asked.

Yeah, Mom, I said.

You know, if I ever get cancer, I wouldn’t go through what your father is going through, she said. I would let nature take its course. I would choose quality over quantity of life.

In his last days at UCLA Medical Center in 1987, my father became a young, human guinea pig willing to green light every experimental treatment. The stabbing knives in surgeries, the bullets of chemotherapies, the countless zaps of radiation—no matter how invasive or debilitating the side effects, the treatments lured my father into believing he was fighting for his life. They sucked him dry and left him with a porous body riddled with tumors.

Right before my naïve eyes, I watched him deteriorate. He’d routinely run three miles a day and competed in the Los Angeles Marathon. Just the year before, he launched his own business, Carson Medical Management, a medical billing company. He spent most of his career toiling as the director of a local hospital, St. Bernardine Medical Center, but he never tired. My dad was like the neighborhood doctor, our own Patch Adams. His silly jokes and goofy faces could turn around anyone’s gloom. It was terrifying to see him slow down, become a patient, and fade from my daily life.

As his body broke down, the doctors replaced his internal organs with tubes and metal medical devices that transformed him into a half-man/half-machine. With each new treatment Brenda, his wife, asked his physician, Is Richard going to make it?

STRUCTURED SILENCE

In the late 1980s, when my father cycled in and out of the medical system, problems of over-aggressive care stemmed from the physicians’ unwillingness to speak of dying and tell patients the truth about their prognosis, said Robert Burt, a professor at Yale University and author of Death Is That Man Taking Names. Physicians pressed all kinds of extremely invasive and incredibly painful treatments on patients with no realistic chance of success, he said.¹ As a consequence, people lost their autonomy and suffered miserable, intolerable pain in their last months of life.

Nicholas Christakis, a physician and sociologist, studied medical prognoses for twenty years and characterized the structured silence around death as part of the daily rhythm in medical practice in a book entitled A Death Foretold: Prophecy and Prognosis in Medical Care. Physicians tend to discuss a grim prognosis only when it’s unavoidable, and more often than not they overestimate survival both to themselves and their patients.

Dr. Elisabeth Kübler-Ross, a physician and a pioneer in the death awareness movement that started in the 1960s, exposed the inflicted abuses on terminally ill patients living in hospitals in the book On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families, published in 1969. She constructed the five stages of the death and dying model that provided an inner lens to view the dying experience as a psychological, not just a physical one. She taught us that with support and an inward journey of self-reflection, the dying person could reach acceptance. She insisted on forgoing the structured silence in favor of honest dialogue between patient, physician, and family.

In 1972, Dr. Kübler-Ross testified at the first national hearings conducted by the U.S. Senate Special Committee on the subject of death with dignity. Two years later the U.S. Senate introduced the first hospice legislation. Hospice care adopted the model of holistic care to treat all encompassing physical, emotional, spiritual, and existential pain. Hospice/palliative care provides the family with an interdisciplinary team—a physician, a nurse, a social worker, a chaplain, and a volunteer aid—to support the patient at home. Though the U.S. Senate passed the Hospice Medicare benefit that stipulated patients could decline all life-prolonging treatments and have a six-months-or-less-to-live-prognosis in order to receive hospice in 1978, the structured silence impeded hospice from reaching patients and their families. So even in 1987, the year my father faced a terminal illness, hospice aided only 177,000 dying patients.²

Dr. Diane Meier, director of the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine, clearly has witnessed a sense of unreality and cognitive dissonance veiling the deathbed.

Patients and families are feeling like they can’t trust their own eyes, Dr. Meier said.³ A patient can feel themselves getting sicker and sicker and the family sees that there is progressive decline, but none of the doctors are talking about it. The patient and family start to feel as if they are losing their minds. ‘Is what we are seeing wrong? And if it is right, then why aren’t the doctors saying anything about it?’

A VEIL OF CONTRADICTION

Needless to say my father’s doctor responded similarly on many occasions. He’s young, he’s strong, and he’s going to make it. If my father’s doctor believed he would make it, why should we believe otherwise?

He was young and he was strong.

When I asked Brenda questions about my father’s cancer, she said, Everything is going to be okay, honey. All the information received from Brenda contradicted my own eyes. I searched for other ways to find out the truth. Bordering obsessive-compulsive behavior, purely out of survival, I sought out the real story to cope with a stifling fear. Ignorant bliss and denial didn’t work for me.

On Saturdays at my dad’s house in La Verne, Brenda often perched on the last barstool in the kitchen and talked for hours on the telephone to her mother and sister in Texas. She was oblivious to me sitting on the couch watching television. In stealth mode, I’d flick through the channels and reduce the volume when her voice lowered to a near whisper. I listened to her unfold the week’s top stories. They were detailed, perilous, and not sugarcoated. I used the information I gathered to ask her pointed questions about the two more tumors growing in his liver, the CAT scan on his pelvic area, and the tumor growing in his lungs. While other kids in junior high chose to do their book report on gymnastics or NASCAR, I elected to explore this elusive enemy. I checked out a cancer book from the school library. I was inquisitive to the point of annoying. Often Brenda would hush me from asking questions.

I don’t want your father to hear, she’d say with tears streaming down her face. We all had to respect this code of silence.

BREAKING THE CODE OF SILENCE

Twelve years later, my mother and I sat in a research hospital on the USC campus, just across town from UCLA. I wanted to remind her that by signing the experimental chemotherapy papers, she chose quantity, but I couldn’t. The doctor gave her the sliver of hope she’d been waiting for. I wanted to tell her once you hop on the chemotherapy merry-goround, it becomes addictive. They’ll treat you till you die. An ominous shadow of the past eclipsed any glimmer of hope as I watched her sign the papers.

The following week, we walked into the Day Hospital, which struck me more as a laboratory. All these human specimen stations equipped with a recliner, television, and IV pole. As the poison entered by mother’s veins, I was haunted by visions of Mom’s face hovering over Dad’s deteriorating body. Mom suggested I interview her during our downtime together. I defined eight hours in hospital for chemo as downtime.

The last time I conducted an interview with someone near death was in 1997 for my college newspaper. It was liberating speaking openly and publicly about death for the first time with a group of young men dying of AIDS in a Long Beach hospice. They fascinated me because they could articulate living with a terminal illness. Their rapidly aging faces, thrush-covered mouths, and emaciated bodies didn’t put me off. Instead, I was strangely comfortable in their company. I’d never spoken to my father about fighting a terminal illness. As a journalist, I could vicariously ask these questions and reach a deeper understanding of the choices Dad made in his last days. My family and friends never talked about the imminence of his death. The denial bothered me most, his denial and the collective denial of death in America.

Still, it wasn’t until my last year of college that I found a group of healthy individuals to discuss this social taboo. The course was called the Sociology of Death and Dying. I learned about grief and Elisabeth Kübler-Ross’s stages of death and dying—denial, anger, depression, bargaining, and acceptance. I began to recognize my own invisible handicap, unexpressed grief from which, unfortunately, many Americans suffer. Grief, a primal response to death, has hardly the conducive environment for expression in our death-denying and grief-avoiding culture.

Philippe Ariès, the social historian, describes this forbidden death attitude as a strangling of sorrow and its public manifestation that consequently forced people to suffer alone and secretly aggravating the trauma stemming from the loss of an intimate family member or friend.⁴ The forbidden death, a cultural construct designed by Americans, according to Ariès, also informed us that children shouldn’t be exposed to death and that parents shouldn’t cry or show emotion in front of the children.

I unknowingly rebelled against this destructive silence in my first interview and subsequent interviews in the chemo lab with my mother. I asked how she defined death. She gave me some heavenly metaphors about the soul passing on to another time and place. When I asked her how she defined quality of life, she said, I can now look at life as a gift. If I can talk to people, I can smile at people, I can interact with others, then life can be good.

We discussed her diagnosis, proximity to death, and decision to enter chemotherapy. Then I decided to ask some open-ended questions to get her to reflect on her life.

Okay, let’s take a look at your life from day one to now. Are there any memories that stand out in your mind that you want to reflect on? I asked.

My divorce, she said.

Why is that?

As soon as you asked that question, I remembered him telling me, she said.

That’s the most significant moment in your life? I asked, trying to disguise my bruised ego. Her answer stung. It felt as if she bit me hard on the face. I thought she might say, The moment I first laid eyes on you after you were born.

Her reminiscence spiraled downward into a grim