Table Of ContentSHE CAME TO LIVE OUT LOUD
An Inspiring Family Journey
Through Illness, Loss, and Grief
by Myra MacPherson
Published by: Scribner,
New York, NY.
Copyright 1999 by Myra MacPherson
BOOK JACKET INFORMATION
Acclaimed author and journalist Myra MacPherson takes the reader on a
remarkably intimate journey into the world of Anna, a vibrant young woman, as
she and her family live with dying. Threaded through this personal tapestry are
vital information and guidance needed by each of us when struggling with great
stress and grief. It teaches us all how to be stronger friends for those we love
who have a limited time to live.
Anna was wise and witty, brave and boisterous. MacPherson spent three years
with her, her family and friends; you are there, experiencing the fun and
laughter, anger and despair, remission and, yes, humor. Anna teaches us that a
positive attitude can prolong life and how to live out loud until the last second.
MacPherson addresses common concerns:
— How families deal with young and teenage children of sick and dying
parents
— How family and friends provide better caregiving support
— Why resilience, anger, and humor sustain us and why platitudes are odious
— The health field: why doctors avoid death and often ignore dying patients,
and advice for change
— Grieving: how long it lasts, how and why men and women grieve
differently, what grievers can do, and how friends can help
After Anna dies of breast cancer, you observe her husband, Jan, who learns
how to grieve positively as he copes with both his pain and the struggles of a
single parent raising two adolescents. There are lessons for everyone—those
confronting death for the first time and those living on after loss. As technology
allows us to live longer, most of us will experience the “abnormal normalcy”
lived in the homes of the seriously ill. Ordinary daily routines commingle with
the terror of waiting for the next medical report, the next stage, the next new
hope.
At a time when most of us seek alternatives to the inhumanity of dying in
impersonal institutions, Anna found her solution in her own home, surrounded
by loved ones, assisted by hospice professionals. You are inside that home, a
home filled with love and care. Ultimately her caregivers’ grief was lessened
knowing that they contributed to a palliative pain-free ending.
She Came to Live Out Loud is a heartfelt tribute to the triumph of the human
spirit in adversity. It reminds us that the capacity for love is what gives us the
opportunity to live meaningful lives. It teaches us survivors that there is,
eventually, joy in remembering those who once gave so much to us, that there is,
indeed, love after death.
Myra MacPherson is the author of two critically acclaimed bestsellers—Long
Time Passing: Vietnam and the Haunted Generation, which was nominated for
the Pulitzer Prize and was a finalist for the Los Angeles Times Book Award, and
The Power Lovers. She was a celebrated journalist for the Washington Post and
wrote for the New York Times and numerous national magazines. She lives in
Washington, D.c., and Miami with her husband and has two grown children by a
previous marriage.
Advance Praise For
She Came to Live Out Loud
”(the book) is moving, deeply moving. I hope it reaches many readers and
penetrates their hearts.”
—Elie Wiesel, Andrew W. Mellon
Professor in the Humanities, Boston
University
“Through this very personal story about one woman’s battle with breast
cancer, Myra MacPherson weaves practical and inspiring lessons into an
intimate portrayal of Anna and her family and friends. Those who have an illness
and those who care for someone with an illness will benefit from Anna’s energy
and courage and the support and dedication of those who love her. We have
much to learn about coping with illness—Myra MacPherson’s book is a
powerful educational tool for a very difficult subject.”
—Former First Lady Rosalynn Carter,
coauthor of Helping Yourself Help
Others: A Book for Caregivers
“With skill and sensitivity, MacPherson conveys the story of this remarkable
woman and her family. Anna’s uncommon courage and lived wisdom provide
invaluable lessons for men and women everywhere, as we strive to support loved
ones who are confronting life’s end—or as we do so ourselves.”
—Ira Byock, M.d., author of
Dying Well
“A fast and riveting read … Myra MacPherson is a great storyteller, and
Anna’s story carries meaning for us all.”
—Lee Smith, award-winning novelist
“This is a rare and wonderful book that tells the poignant story of love and
death in a family. MacPherson, however, also weaves advice, information, and
common sense into this story about death and grief, which makes it an
extraordinarily helpful guide to those who want (or need) to explore these often
avoided topics.”
—Jimmie C. Holland, M.d.,
Chairman, Department of Psychiatry and
Behavioral Sciences, Memorial
Sloan-Kettering Cancer Center
““Denial” is not a river in Egypt. It runs through American culture, allowing
many to think they can avoid the unavoidable—death and grief. Myra
MacPherson is a brilliant writer who plumbs her direct confrontations with death
and grief in the prologue. She then introduces us to a couple of the baby boom
generation—Anna and Jan Johannessen. She spends two years with them as this
strong, magical woman Anna slowly dies, and then spends a year with her
family as they cope with grief. Confront denial. Read this book!”
—Former congresswoman Patricia
Schroder
“To write about grief without mawkishness, with deep, real feeling for what it
really is, requires a truly good writer. Myra MacPherson has done it.”
—Betty Friedan, Author of The
Feminine Mystique
Also By Myra MacPherson
The Power Lovers: An Intimate Look
at Politicians and Their Marriages Longtime Passing: Vietnam and the
Haunted
Generation
For Anna,
Jan, Ellery, Lindsay, and
their extended family and friends
and
for Jack and
our extended family and friends
and
in memory of my mother
If you asked me what I came into this world to do, I will tell you: I came to
live out loud.
@emile Zola
SHE CAME TO
LIVE OUT LOUD
Introduction
In Living with Life-Threatening Illness, I emphasize that even in the midst of
a struggle with a disease that threatens existence, persons still continue to live.
They work, raise children, argue with spouses, make love, enjoy friends, and
otherwise engage in the sublime and mundane facets of life. They do this as they
cope with anxieties and treatments. Even in the face of illness, they live.
But Anna’s story illustrates that point far more eloquently in this new book by
Myra MacPherson, She Came to Live Out Loud. The book is subtitled An
Inspiring Family Journey Through Illness, Loss, and Grief. And it is. Part of the
reason for that is that it is Anna’s story, powerfully told.
As MacPherson recounts in this book, I met Anna toward the end of her
struggle with cancer. It was to be one of her last “good” days. And it wasn’t that
great a day. Despite the wonderfully prepared and presented dinner, Anna did
not have much of an appetite. No matter, she still sparkled. She had a way of
engaging each and any person she encountered. Any sense of sorrow, even pity,
fell to her enchantment. Only later did reality remind me that this rare individual
might not be alive in a few weeks.
Yet this is more than the story of a special person, of even an unusual family’s
struggle with cancer. It is much more universal than that. In a sense, every story
of a life-threatening illness is the story of how one person, and one family, cope.
These cases are the building blocks of the theories we have about how we react
to illness, loss, and grief. Those theories are merely abstractions of that
individual reality. Moreover, Anna’s story reminds us never to lose sight of the
individual in our theorizing but instead to focus on how that person copes, on his
or her strengths, on the uniquely individual sources of hope and sustenance.
MacPherson shares with us Anna’s story, her up-and-down struggle with the
disease, her decisions, and her strengths and weaknesses. And in telling that
story, we learn another truth, that every disease affects those around—spouse,
children, family, and friends. And so we see how they cope with Anna’s illness
as well as her death. We learn from them as well.
This book will touch us in very different ways. For some of us, it may remind
us of the struggles we have experienced or witnessed. For others, it may
reaffirm, help us rediscover—or, even, discover—our own strategies and
strengths as we confront illness or loss. And I believe for all of us, it will allow
us to acknowledge the very quiet yet special heroism that allows us to live fully
even as we die.
Kenneth J. Doka, Ph.d.,
Professor of Gerontology, College
of New Rochelle; Lutheran minister;
Senior Adviser to the Hospice Foundation
of America; Chair of the International Work
Group on Death, Dying, and Bereavement;
Past President of the Association for Death
Education and Counseling
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 not need such cosmetic totems as
rouge and lipstick and silk-lined caskets.
When I stumbled off the plane from the East Coast that Saturday morning, I
picked up my father and soon we entered this tiny funeral home in Indio, an
undistinguished hamlet in the windswept California desert. The funeral home
had gone all out, one could say, by opening its doors even though my father and
I had not requested an appointment—which, we were assured by the young man
in the T-shirt and Bermuda shorts, was protocol.
“You are here to arrange the final details?” he asked, in a tone not far removed
from that of an elementary teacher talking to the class. Nothing could be more
final, I felt like saying, anger rising. This was an indifferent man among the
dead, with his pressing concern, no doubt, an afternoon tennis game. His
calculator clicked away: the cost of embalming, for having picked mother up at
the hospital, for putting a notice in the newspaper. I said that I would like to see
my mother. The young man informed me that they hadn’t prepared her “to
receive guests,” as if she were a grande dame in her mansion. “I am not a guest,”
I said. “She is my mother and I would like to see her.”
“Very well,” he said, flipping his calculator open again. “It will take a few
minutes to prepare her.”
“What do you mean “prepare”?”
“Well, we have to make her look presentable.”
I found out that preparation meant putting my mother’s body on a table and
covering her with a pink blanket; pink, of course, to cast color.
“To see her,” he said, “will be an additional fifty dollars.”
He was not conditioned for the explosion that came from me and my father.
The Uriah Heep of Funeral Homes mysteriously and quickly summoned 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 quarreled 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,
even 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.
