She Came to Live out Loud: An Inspiring Family Journey through Illness, Loss, and Grief

She Came to Live out Loud: An Inspiring Family Journey through Illness, Loss, and Grief

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Overview

A celebrated journalist gives helpful, sensitive advice for dealing with the universality of grief.

Product Details

ISBN-13: 9780684822648
Publisher: Scribner
Publication date: 02/18/1999
Pages: 384
Product dimensions: 6.12(w) x 9.25(h) x 1.11(d)

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Prologue

Learning

THE ELEPHANT IN THE ROOM

There's an elephant in the room. It is large and squatting, so it is hard to get around it. Yet we squeeze by with "How are you?" and "I'm fine"...and a thousand other forms of trivial chatter. We talk about the weather. We talk about work. We talk about everything else — except the elephant in the room. There's an elephant in the room. We all know it's there. We are thinking about the elephant as we talk together. It is constantly on our minds. For, you see, it is a very big elephant. It has hurt us all. But we do not talk about the elephant in the room. Oh, please say her name. Oh, please say "Barbara" again. Oh, please, let's talk about the elephant in the room. For if we talk about her death, perhaps we can talk about her life. Can I say "Barbara" to you and not have you look away? For if I cannot, then you are leaving me. Alone...in a room...with an elephant.

Terry Kettering

I kiss her forehead. It is as cold as an ice sculpture. I involuntarily reach up to touch my mouth, tingling now with that ice-burn feeling. It conjures up a remembrance of times past, childhood mittens beaded with snow lifted to mouth, cold fabric sticking to warm lips.

I look down at my mother, who is no longer my mother. I had not been able to get there in time, while her eyes were open, while she could say hello, while I could hold her. At eighty-one, she looks as young in death as she had in life, a round full face saved by high cheekbones. But her arresting dark brown eyes are closed forever. My mother is unpainted in death, thank God. Unlike the rituals of funereal viewing, the urn would notd the owner, who entered from a back door. He was apologetic about the appearance of his assistant. "Normally, he would have received you in a coat and tie, but since you didn't call for an appointment..." he said, his voice trailing off.

Appearances weren't the problem, I said. What mattered was a basic lack of consideration for feelings, the concern for their precious fifty dollars. The voice of the owner glided along: "Had you requested viewing of the body, it would have, of course, been itemized in the initial billing, but since this was a last-minute request, we could do nothing but to add it."

"Why does it cost fifty dollars?" I asked.

"Well, it just does. It is so itemized," he said, bringing out his list much like a clerk at the dry cleaners: $3.75 to iron a shirt with French cuffs, $4.50 for a suit jacket.

The desire to see my mother took precedence over the principle of refusing to pay their fee. After my moments with Mom, a whispered "I love you" to that stilled body beneath the pink blanket, I returned to the outer office with its brown fake-wood paneling, fake orange flowers, fake sentiments (at least to this funeral home) hung on the walls: "Show me the manner in which a nation or community cares for its dead and I will measure with mathematical exactness the tender sympathies of its people, their respect for the laws of the land and their loyalty to high ideals." The funeral home's notepaper had placed its most ironic message in italics above the telephone number: "In Your Hour of Need."

Flying home, I read a newspaper item that sent me into hysterical laughter — dark, macabre humor that inexplicably relieves tension and sorrow. A funeral home and a customer had quar reled over a bill, the customer saying that it had been paid in full, the funeral home disagreeing. The home settled the argument by dumping the dead body on the doorstep of the survivors. I read it to my dad on the phone, saying, "Well, it could have been worse!" This image, despite the grimness for those involved, caused both of us to laugh. It was the only laugh in a week that had jangled and jarred its way to an end. No sooner had we walked back inside my parents' bungalow from the funeral home than I was quickly erasing all traces of my mother. My father had instructed me to.

"This was not the way it was supposed to be," I thought, taking jackets and golf skirts and slacks off the rack, folding up nightgowns, grown larger over the years. No good-byes and no warning. Mom was never seriously sick a day in her life. Nor did we ever say good-bye as a family. Dad felt that he could not get through it and said no to a memorial service.

The jangle of the phone broke into the quiet of the cabin in the North Carolina mountains. My father, stumbling over his words, told me that Mom was in the hospital and may have had a slight heart attack. I had never heard such frailness in his voice. My hands trembled as I called the hospital three thousand miles away. Mom was in intensive care but resting well. I walked through the woods with my dog to reach the clearing and my private place of serenity. Sun shone over mountains misting into rounded humps. Insects buzzed. "Please, God," I said.

The next call from the hospital was noncommittal. It appeared as if mother had had a mild heart attack. If tests showed no complications, she might go home within days. I fastened on to that part of the message. I could not catch a plane until early next morning. That would be fine, they assured me. (Later I learned that my mother, like countless others who feel something is wrong, had avoided rather than sought help; only when my father saw her reading up on angina did she go to the hospital.)

Relief overwhelmed me as I threw clothes into a bag, planning to care for my father first and then Mom when she got home. I had such a longing to talk to Mom, but there are no phones in ICU. The nurse assured me that Mom knew I was coming tomorrow and that the news made my mother "very happy." Forty-five minutes later I was completing last-minute details in my office. The phone rang. It was a call I will remember all of my life. I heard my father's strangled words. "Things are worse. They don't think she is going to make it." I felt nauseous; a tingling shot through my body. Suddenly I was shrieking. Six years later I still remember that raw, banshee wail, echoing through the trees as I raced up to the house. My husband, Jack, caught me in his arms in the living room. "They think Mom is dying," I sobbed.

In that instant, my husband, there for me as always, decided to fly with me to California. The two-and-a-half-hour drive to Charlotte, North Carolina, was silent. My husband's quiet manner, sometimes a soothing balm, sometimes an irritant, seemed in keeping with my own stunned silence. I did not want so-called reassuring platitudes. Nor did I want practical advice on how to handle things. We pulled into the driveway of my daughter, Leah's, apartment; she was starting her television career in Charlotte. I raced to the phone. Dad's line was busy, so was my brother's. I knew without speaking to anyone that Mom had died, eve n as she was wired and monitored in the intensive care unit. My brother confirmed this when I broke in on the call.

Leah set about making stiff drinks, and I downed them quickly as tears and storming anger fought for supremacy: anger at the hospital and the airlines and for the circumstance of living in rural mountains in the summer that made it impossible to catch a plane immediately; anger at myself for not having called Mom the week before, for believing those nurses and doctors and their positive reports.

And there was guilt: Why had it taken me so long to understand my mother? I asked myself many times. There were encroaching family dynamics. My daughter was concerned for me, not for a distant grandmother who had died on the West Coast. "You never got a chance to really know her," I wailed. Such secondary losses, as they are termed, were already entering my thoughts. At dawn, eyes bloodshot, with a fiercely pounding head, I started on a journey — a long journey as I collapsed into grief and the shock of sudden and unexpected death. It lingers to this day. But this led to a journey of discovery as I determined to learn how to ease the inevitable grief of this inevitable end of living we all face, for us and for our friends and families — a determination that led me to this book.


If there was any reward to this knifelike shock of Mom's death, it was sensitizing me to the full weight of grief. As I sought answers to help people through this time, I found myself facing an American paradox of insane proportions. We encounter loss and sorrow daily. And yet we collude in a pathological dance of denial that merely heightens the pain of grieving. I am no stranger to this disease of denial my self — that ostrich-head-in-the-sand this-won't-happen-to-me-or-people-I-love syndrome, an avoidance of what is so real and constant. Frantic activity, "burying yourself in work," are distractions, but they won't cause grief to disappear. We grieve for everything, the small and the large — the end of a summer's vacation, the end of youth (and that can mean anything from turning thirty to turning eighty!), lost friendships and lost loves, divorces and downsizing, not getting into the college of our choice, dwindling careers or power, moving away from family or friends, and on to the deepest losses, illness and death. Being alive automatically means experiencing grief. It is normal — our common bond. If we are capable of love, we are capable of grief; that's all there is to it.

Death has been the fascinating core of plays, books, poetry, song, comedies, and romance since antiquity. It is constant fare in the movies and in New Yorker cartoons, an endless television staple, either in love stories and violent dramas or in the nightly news. Perhaps this is how we can deal with it, at a remove. But in some cultures death is a healthier presence, as in the Mexican celebration of the dead, All Saints' Day, where the dead are honored in wakelike abundance.

Denying death, which is a natural part of living, is as destructive as denying grief. In the United States alone, some 2.4 million people die each year; they are the top of an ever-widening pyramid as additional millions of friends and family remain behind to grieve. And, as I found out, to face illness, death, and grieving without guidelines or help can be perilous.

It has been said that teachers teach what they most need to learn. P erhaps writers write about what they most need to learn. I fell apart in my grief, unable to find the fierce concentration needed to complete a book, not knowing that there were people out there who could help me, not fathoming why I was so unable to function, not understanding why the arsenal of bromides from well-meaning friends and acquaintances offended me, especially as I realized I too had been just as guilty as they. Those same stumbling, helpless mumbles had come forth when I had tried to console grieving friends in the days before I had felt its full weight myself: "You had her a long time," "You're lucky that you were not young; when my mother died I was in my thirties...." "At least she didn't suffer." All I could think of was that they had no understanding of how I felt. Nor of the loneliness that comes with the relative indifference an adult child faces with the "expected" loss of an elderly parent. To me, the most insensitive of platitudes is the one so popularized by President Clinton — "I feel your pain" — followed by "I understand how you feel." One can empathize, but no one can understand what another is feeling in times of desolation and grief.

At the same time, my children were trying to cope with a different face of death — the long-term illness of their father, my ex-husband, Morrie Siegel. "It was May 1994 as I stared down at my father, resting in the hospital," wrote my son, Michael. "Dad's seven-year battle with cancer had brought him to this anesthetized state of recovery twice before. My father was a sportswriter. He had been in the business for over fifty years. His most memorable assignment remained the night he covered Rocky Marciano's victory over Jersey Jo e Walcott to retain the world heavyweight boxing title at Philadelphia's Shibe Park in 1962. My most memorable moment with him remains the week I watched as he recovered from six hours of surgery at Washington's Georgetown University Hospital in November 1989. The operation was a success, but my life changed forever that day, at the age of twenty-two. I realized that I had a limited amount of time to be all I could be to my father.

"Now I want to seal away every detail of these past seven years. Not that I hope to pass them on as anecdotes to my children, family, or friends. Hospital stories would hardly do justice to him. Dad, like most people, hated hospitals and although his grace and wit distinguished him from most of the cancer patients I met, his life was too large to be eclipsed by a seven-year illness. Years from now, I am certain he will not be remembered as a patient. But his hospital days will always be important to me. Important because, above all else, these stays gave me a chance to see the private side of a man who lived to be public." Morrie died a few days later.

The twenty-nine-year-old son was a picture of grace and eloquence later at a memorial service large on laughter, merciful laughter, as one story after another rolled off the tongues of Morrie's buddies — satirist Mark Russell; the Washington Post's Ben Bradlee; Morrie's mentor, Shirley Povich; The Palm restaurateur Tommy Jacomo; Washington Post sports editor, George Solomon. The synagogue rocked with laughter as on flowed the stories about bookmakers and card sharks, of sportswriting in the days when it was a quirky art, stories certainly never heard in a synagogue before — a fact that registered in the eyebrows of the cantor as they rose sharply as each testifier seemed bent on topping the other.

At the end, it was my son's turn: "Dad battled the odds with courage and a selfless grace many of us will never know....Dad has left us all with endless memories and an eternal friendship. He also gave me and my sister something that we will carry with pride for the rest of our lives — and that is that we are Morrie Siegel's children."


All too soon the support that comes immediately following a death fades into the realities of everyday life, although for the survivors, that is when depression and mourning really take hold. My children and I learned, as have all too many of us, that grieving involves many complex emotions — among them anger, guilt, relief, sadness, anxiety, depression, and loneliness. The feeling that nobody understands heightens one's isolation. Few of my son's friends, for example, had shared his experience of losing a father. My daughter had a less complicated relationship with her father and also a less complicated grief. She also had had more experience with death, having worked at a home for AIDS victims. I fell into the category of disenfranchised grief. I was an "adult child" in my fifties when my mother died, and I came under the heading of "developmentally expected loss." Translating the jargon, this meant "At your age it shouldn't be so difficult." But it can be terribly difficult for us who, as one friend said, "found myself an orphan at age sixty-three." Yet our grief is treated with relative indifference. Adult children themselves tend to fight their own deep emotions when it comes to an expected loss. "My mother is dying — she's ninety-five — that's what she's < I>supposed to do," said a friend of mine, Ginny Thornburgh. "So why am I feeling so terrible?" I helped her recognize what I had to be taught — that the loss of a long, close relationship can be as unsettling as an earlier death of a parent.

I joined the disenfranchised again when I grieved for my ex-husband and memories past, even though I was happily remarried. The former spouse, the lover, the good friend, the business colleague, very young children, distant relatives — all are among those seldom considered as socially accepted deep grievers. Yet who is to say that the loss for these people is any less heartbreaking than that of the immediate family?

In such shattering times, it is important to remember that there is no one way — and no "correct" way — to grieve. Emotional expression may not be your style, or you may collapse in tears for months or years at some remembrance. You may retreat or you may race back to work; you may seek frenetic activity or champion a cause to honor the dead. Because it is your grief, it is happening for the first time, it is the hardest time, the most searing. Give yourself permission to grieve the way you want to and for as long, or as short, as you need and not be driven by friends and family who urge you to "get on with life" or to "get over it." Grief is a process, not an obstacle course to "get over."

Grief can be disorienting — judgment, thinking, coherent action, concentration can vanish, and grievers can think they are going crazy. One can drive a car and forget where one is going, conversations can blur in an instant, nothing can be retained. The diagnostic manual of the American Psychiatric Association now agrees that "thinking that [a survivor] hears the voice of or transiently sees the image of the deceased person" is not abnormal grieving. This can come in the form of astonishingly real dreams or premonitions, including uncanny knowledge of the exact time of death.

Physically, grief can cause stomachaches, headaches, arms that ache for a loved one, and serious illnesses. One woman, living through anticipatory grief when her father was diagnosed with cancer, ground her teeth so much that she deadened the nerve in a tooth and had to have a root canal operation. When a spouse dies, the losses are great at any age — not only the intense loneliness of losing one's closest companion but such secondary losses as social and/or financial support and a defined role in the community. The hole in one's heart when a child dies is immeasurable.

In our culture, however, where people race from meeting to meeting, zap the instant E-mail, everything and every emotion has the shelf life of fresh shrimp. We are not kind to grievers. We expect drive-through grieving — as if one's feelings can be deposited at a window with efficient haste like one deposits checks in the drive-through lane of a bank. Many people do not recognize, for example, that grieving begins at the moment of diagnosis. Even if one gets better or beats the odds, the precariousness of life is there, a knowledge that, paradoxically, often coincides with a heightened appreciation of life and living for each moment.

We are used to thinking of mortality as the province of the aged, but it strikes children and adolescents and the middle aged, rich and poor, good and bad. One hundred years ago, the death of a child was a terrifying probability. Then came the wonders of vaccines and sanitation, and a child dying before a parent became considered as a horrible, unnatural occurrence. Unfortunately, this cannot be said today. The AIDS pandemic, for one, has changed the equation enormously as entire countries, families, and friends bear witness to a young generation annihilated the world over. A man in Key West told me, "I've just turned forty — and I have been to seventy-five funerals. I've stopped counting." Pain borne when children die is for many parents heartbreakingly unavoidable; gunshot wounds are the second leading cause of death for adolescents aged seventeen to twenty-five, following vehicular deaths. Adolescence is a peak period for suicides, while cancer and other illnesses claim them even younger. In the same month last year, two couples I know lost their sons — one to a long battle with cancer, the other in a bizarre accident.


My involvement with illness, end-of-life issues, and bereavement coincided with a cataclysmic, volatile time of exploration. Both overtreatment (technical measures) and undertreatment (not providing pain-free care) were under attack. Living wills became talk-show fare; one television participant revealed the lengths she went to in order to make her wishes understood — her living will was tattooed on her stomach. Rebellion surfaced in citizens who tired of the horrors of HMOs and insurance companies, hospitals where 180,000 people died annually from errors, the medical profession's indifference to humane pain management. Everything from AIDS quilts to the Kevorkian battle awakened a nation to the need to honor both the dying and the bereaved, and spawned the question, Who's death is it anyway? In 1997, Oregon's voters pushe d us into a new stage of medical ethics; it became the first state to uphold an assisted suicide law. The fierce debate prompted deep examination of end-of-life alternatives. As a result, Oregon leads the country in at-home hospice care as opposed to hospitals for the dying. Assisted dying, in my opinion, is a far more accurate description.

Studies indicate that the vast majority of Americans — 90 percent — wish to die at home, but most die in hospitals. A burgeoning movement toward hospice — where the goal is to have patients die at home with pain-free palliative care — is changing those odds. Of the 2.4 million who died in the United States in 1996, nearly half a million died in hospice care — a fair number if one rules out those deaths that would not fall into hospice categories: homicides; auto accidents; suicides; and deaths resulting from short, acute illnesses or accidents; or for those who live alone. A longing to return to spiritual and emotional succor for the dying has been the backbone of the 3,000-member Association for Death Education and Counseling (ADEC), comprised of social workers and sociologists, psychiatrists and psychologists, doctors and hospice leaders throughout the world. Courses are now taught that are aimed at changing American attitudes on death and dying. A vivid example of personal sorrow turned positive is financier philanthropist George Soros, who set aside $15 million of his institute's money for Project Death in America following his experience with the death of his mother. The medical profession has been forced to police itself with committees that expose drastic deficiencies and offer solutions in the education, training, and performance of doctors, nurses , and other medical personnel in humane end-of-life practices.

A shockingly small amount of time is spent in med school on how to deal with patients, which should be a prominent part of the curriculum. Says Dr. William Lamers, an internationally known hospice doctor, "There is much we doctors could do to ease the pain, the anxieties, and concerns of dying persons and their families." Like many young medical professionals, Mary Jo Devine, a Washington, D.C., nurse, was rebelling against the inhumane warehousing of the dying in many hospitals. "A hospital nurse is not able to have an emotional connection with patients," she remarked. "The most I'm able to spend with a patient is thirty minutes before they're gone." She was taking courses on bereavement. "I hope to balance this out and provide the emotional connection missing in my work. To be more 'natural' in dealing with emotionally charged situations. For example, my roommate's father died. We haven't even spoken about it!"

When my husband became the president of the Hospice Foundation of America and I later began my book, I said that we would be the two most unpopular people at any party. Not so. People who had never talked about anything more personal than the president's budget began revealing their own encounters with death — family suicides, losing parents and children to accidents and illness, and a desire to express their hospice experiences and how to get through mourning. Try bringing up the subject. You may find a level of rewarding communication. A sign of changing times was the public display of understanding the Knicks coach and teammates showed for the player John Starks, whose performance suffered the effects of his grieving for the beloved grandmother, who raised him, as she lay dying in the final stages of cancer in 1998. During his slump, said one teammate, "We're all for him. She means a lot to him." Perhaps the final days of the twentieth century may become known as a time when death was allowed to come out of the closet.

Along the way, I made the decision to tell the story of one family — to explore their interior lives, hopes, dreams, and fears in all its richness — rather than recite disjointed and disembodied case histories to prove a point. In my random search, I was given an inexpressible gift. I found Anna and Jan Johannessen and their circle of family and friends, with whom I spent more than two years. Like one-third of all Americans, the Johannessens are part of the baby-boom generation who are now facing their own or their friends' illnesses and deaths as well as that of their parents'. I had not thought of writing about a specific disease. The wounds are as deep for a family coping with any illness, dying, and bereavement. Given that three out of four families will be touched by cancer and that breast cancer is the number one killer of women between the ages of thirty-five and fifty-four, however, it was not surprising that I found Anna, who faced the fear that all women face. But what is amazing was this magical woman, her family, and those who cared for her.

Hers is an intimate story of coping writ large, a personal tale woven into a larger mosaic of the universal concerns of us all — living and loving, dying and death, family tragedies and joys, dealing with children in positive ways when the news is so bad, grief and learning to live again. Anna's story is uplifting in its humor and compassion, i ts wisdom and its caring. She teaches us all how to live out loud.

Dr. Kenneth Doka opens speeches with a line that ensures immediate attention: "I know how you are all going to die." He then goes on to say that most of us will die as we live. If you are a crank and a grouse, thinking only of yourself, that's probably how you will go. One can hope that being forearmed is being forewarned. Anna always said she was just an ordinary person. In the world of instant celebrity hype, the jillion-dollar basketball star, the latest microtalent out of Hollywood, perhaps she was right. But in the ways that matter, Anna was extraordinary — and she was not alone. Her story, an exaltation of the human spirit in adversity, is replicated daily throughout this land. Beyond the klieg lights are ordinary people just like Anna, whose lives are founded on courage and compassion, determination and dreams, humor and humanity.

Well, maybe not just like Anna. No one could be just like Anna. She remains one of the greatest gifts of my lifetime. It is my privilege to pass that gift on to you.

June 1998

Copyright © 1999 by Myra MacPherson

Table of Contents

Introduction11
Prologue: Learning13
PART I A Charmed Life
1. Meeting Anna29
2. Starting Out39
3. A New Stage59
PART II A Rage to Live
4. "The Return of the Big C," Insurance Companies, and
Other Snafus77
5. Resilience, Anger, and Humor89
6. Coping Day by Day103
7. The Clay Wall113
8. Paving the Way129
9. All in the Family: Masculine and Feminine Grieving145
10. Riding the Roller Coaster165
11. Reprieve177
12. In Limbo193
PART III A New Level of Existence
13. Anna's Choice211
14. Telling the Children223
15. "I Want Wonder"237
16. April253
17. Caregivers267
18. Letting Go287
PART IV Grieving: Our Common Bond
19. Love Beyond Death305
20. How to Go On Living317
21. Lessons and Reflections337
Resources357
Notes361
Suggested Bibliography365
Acknowledgments367
Index369

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