The End of Your Life Book Club

by Will Schwalbe

  THIS IS A BORZOI BOOK

  PUBLISHED BY ALFRED A. KNOPF AND

  ALFRED A. KNOPF CANADA

  Copyright © 2012 by Will Schwalbe

  All rights reserved. Published in the United States by Alfred A. Knopf, a division of Random House, Inc., New York, and in Canada by Alfred A. Knopf Canada, a division of Random House of Canada Limited, Toronto.

  www.aaknopf.com

  www.randomhouse.ca

  Knopf, Borzoi Books, and the colophon are registered trademarks of Random House, Inc. Knopf Canada and colophon are trademarks.

  Owing to limitations of space, all acknowledgments for permissions to reprint previously published material may be found at the end of the volume.

  Library of Congress Cataloging-in-Publication Data

  Schwalbe, Will.

  The end of your life book club / by Will Schwalbe. — 1st ed.

  p. cm.

  1. Cancer—patients—United States—Biography. 2. Cancer—Patients—

  United States—Family relationships. I. Title.

  RC265.5.S39 2012

  616.99′40092—dc23

  [B] 2012018989

  Library and Archives Canada Cataloguing in Publication

  Schwalbe, Will

  The end of your life book club / Will Schwalbe.

  eISBN: 978-0-307-96111-2

  1. Schwalbe, Mary Anne. 2. Schwalbe, Will—Family. 3. Schwalbe, Mary Anne—Books and reading. 4. Schwalbe, Will—Books and reading. 5. Educators—United States—Biography. 6. Cancer— Patients—United States—Biography. I. Title.

  LA2317.S38S38 2012 370.92 C2012-902055-9

  Jacket design by Carol Devine Carson

  v3.1

  My sister, my brother, and I all had extraordinary times and

  conversations with our mother throughout her life and during

  her last years. Dad spent more time with her than anyone—

  over decades of marriage and at the end—and his care for her,

  and their love for each other, inspired all of us.

  What follows is my story. If it’s mostly about Mom and me,

  and less about my father and siblings, that’s only because

  I believe that their stories are theirs to tell,

  if and when they choose.

  This book is dedicated with love and gratitude

  to Nina, Doug, and Dad—

  and David.

  CONTENTS

  Cover

  Title Page

  Copyright

  Dedication

  Author’s Note

  Crossing to Safety

  Appointment in Samarra

  Seventy Verses on Emptiness

  Marjorie Morningstar

  The Hobbit

  Daily Strength for Daily Needs

  People of the Book

  “I Am Sorrow”

  The Uncommon Reader

  The Lizard Cage

  Brat Farrar

  Continental Drift

  The Painted Veil

  Murder in the Cathedral

  Wherever You Go, There You Are

  Kokoro

  The Price of Salt

  The Reluctant Fundamentalist

  The Year of Magical Thinking

  Olive Kitteridge

  Girls Like Us

  Suite Française

  The Bite of the Mango

  The Elegance of the Hedgehog

  The Girl with the Dragon Tattoo

  Brooklyn

  My Father’s Tears

  Too Much Happiness

  Epilogue

  Acknowledgments

  Appendix

  A Note About the Author

  Reading Group Guide

  Other Books by This Author

  AUTHOR’S NOTE

  I didn’t know I was going to write this book while we were living through most of the events in it. So I’ve had to rely on my memory, along with notes I scribbled randomly; papers, lists, speeches, and letters that Mom gave me; emails between us; the blog we kept; and help from family and friends. I’m certain that I’ve occasionally muddled chronology and facts and confused some conversations. But I’ve tried to be true to the spirit rather than the letter of our discussions and to give an honest depiction of what we went through together. Mom would say: “Do your best, and that’s all you can do.” I hope I have.

  Crossing to Safety

  We were nuts about the mocha in the waiting room at Memorial Sloan-Kettering’s outpatient care center. The coffee isn’t so good, and the hot chocolate is worse. But if, as Mom and I discovered, you push the “mocha” button, you see how two not-very-good things can come together to make something quite delicious. The graham crackers aren’t bad either.

  The outpatient care center is housed on the very pleasant fourth floor of a handsome black steel and glass office building in Manhattan on the corner of 53rd Street and Third Avenue. Its visitors are fortunate that it’s so pleasant, because they spend many hours there. This is where people with cancer wait to see their doctors and to be hooked up to a drip for doses of the life-prolonging poison that is one of the wonders of the modern medical world. By the late autumn of 2007, my mother and I began meeting there regularly.

  Our book club got its formal start with the mocha and one of the most casual questions two people can ask each other: “What are you reading?” It’s something of a quaint question these days. More often in lulls of conversation people ask, “What movies have you seen?” or “Where are you going on vacation?” You can no longer assume, the way you could when I was growing up, that anyone is reading anything. But it’s a question my mother and I asked each other for as long as I can remember. So one November day, while passing the time between when they took Mom’s blood and when she saw the doctor (which preceded the chemo), I threw out that question. Mom answered that she was reading an extraordinary book, Crossing to Safety by Wallace Stegner.

  Crossing to Safety, which was first published in 1987, is one of those books I’d always so intended to read that I spent years pretending not only that I’d actually read it but also that I knew more about its author than that he’d been born in the early years of the twentieth century and wrote mostly about the American West. I worked in book publishing for twenty-one years and, in various conversation lulls, got into the habit of asking people, especially booksellers, the name of their favorite book and why they loved it so much. One of the most frequently named books was and is always Crossing to Safety.

  Raving about books I hadn’t read yet was part of my job. But there’s a difference between casually fibbing to a bookseller and lying to your seventy-three-year-old mother when you are accompanying her for treatments to slow the growth of a cancer that had already spread from her pancreas to her liver by the time it was diagnosed.

  I confessed that I had not, in fact, read this book.

  “I’ll give you my copy when I’m finished,” said my mother, who was always much thriftier than I am.

  “That’s okay, I have a copy,” I told her, which was, in fact, true. There are certain books that I mean to read and keep stacked by my bedside. I even take them on trips. Some of my books should be awarded their own frequent-flier miles, they’ve traveled so much. I take these volumes on flight after flight with the best of intentions and then wind up reading anything and everything else (SkyMall! Golf Digest!). I’d brought Crossing to Safety on so many trips and returned it to my bedside unread so many times that it could have earned at least one first-class ticket to Tokyo on Japan Airlines.

  But this time it would be different. That weekend I started it, and then, at about page twenty or so, the magical thing occurred that happens only with the very best books: I became absorbed
and obsessed and entered the “Can’t you see I’m reading?” mode. For those of you who haven’t read Crossing to Safety (or are still pretending to have read it), it’s a story about the lifelong friendship of two couples: Sid and Charity, and Larry and Sally. At the start of the novel, Charity is dying of cancer. So once I read it, it was natural that I would want to talk about it with Mom. The novel gave us a way to discuss some of the things she was facing and some of the things I was facing.

  “Do you think he’ll be all right?” I would ask her, referring to Sid, who is very much alone at the end.

  “Of course it’ll be tough on him, but I think he’ll be fine. I’m quite sure of it. Maybe not right away. But he’ll be fine,” she would answer, also referring to Sid but perhaps to my father as well.

  Books had always been a way for my mother and me to introduce and explore topics that concerned us but made us uneasy, and they had also always given us something to talk about when we were stressed or anxious. In the months since her diagnosis, we’d started talking more and more about books. But it was with Crossing to Safety that we both began to realize that our discussions were more than casual—that we had created, without knowing it, a very unusual book club, one with only two members. As in many book clubs, our conversations bounced around between the characters’ lives and our own. Sometimes we discussed a book in depth; other times we found ourselves in a conversation that had little to do with the book or the author who had sparked it.

  I wanted to learn more about my mother’s life and the choices she’d made, so I often steered the conversation there. She had an agenda of her own, as she almost always did. It took me some time, and some help, to figure it out.

  Over the course of Mom’s illness, before and after Crossing to Safety, Mom and I read dozens of books of all different kinds. We didn’t read only “great books,” we read casually and promiscuously and whimsically. (As I said, my mother was thrifty; if you gave her a book, she would read it.) We didn’t always read the same books at the same time; nor did we meet over meals, nor on specific days, nor a set number of times per month. But we were forced to keep coming back to that waiting room as Mom’s health got worse and worse. And we talked about books just as often as we talked about anything.

  My mother was a fast reader. Oh, and one other thing I should mention. She always read the end of a book first because she couldn’t wait to find out how things would turn out. I realized, when I started writing this book, that, in a way, she’d already read the end of it—when you have pancreatic cancer that’s diagnosed after it’s spread, there isn’t likely to be a surprise ending. You can be fairly certain of what fate has in store.

  You could say that the book club became our life, but it would be more accurate to say that our life became a book club. Maybe it had always been one—and it took Mom’s illness to make us realize that. We didn’t talk much about the club. We talked about the books, and we talked about our lives.

  We all have a lot more to read than we can read and a lot more to do than we can do. Still, one of the things I learned from Mom is this: Reading isn’t the opposite of doing; it’s the opposite of dying. I will never be able to read my mother’s favorite books without thinking of her—and when I pass them on and recommend them, I’ll know that some of what made her goes with them; that some of my mother will live on in those readers, readers who may be inspired to love the way she loved and do their own version of what she did in the world.

  But I’ve gotten ahead of myself. Let me go back to the beginning, or rather the beginning of the end, to before Mom’s diagnosis, when she started to get sick and we didn’t know why.

  Appointment in Samarra

  Mom and I loved opening lines of novels. “The small boys came early to the hanging” was one of our favorites, from Ken Follett’s The Pillars of the Earth. How could you not go on reading? And the first sentence of John Irving’s A Prayer for Owen Meany: “I am doomed to remember a boy with a wrecked voice—not because of his voice, or because he was the smallest person I ever knew, or even because he was the instrument of my mother’s death, but because he is the reason I believe in God; I am a Christian because of Owen Meany.” And E. M. Forster’s first line in Howards End: “One may as well begin with Helen’s letters to her sister.” It’s the “may as well” that draws you in—casual, chatty even, yet it gives the reader a strong sense that there’s a lot of story to come.

  Some novelists start with opening lines that foretell the major action of the book; some begin with hints; others with words that simply set a scene or describe a character, showing the reader a world before a deluge—with no hint as to what is to come. What never needs to be written is: “Little did she know her life was about to change forever.” Many authors adopt something like this when they want to create suspense. The truth is that people never realize their lives are about to change in unforeseen ways—that’s just the nature of unforeseen ways.

  We were no different.

  The year 2007 had begun with Mom and Dad spending some weeks in Vero Beach, Florida, a place Mom discovered late in life and loved. I remember now with some guilt repeating to her a line I’d heard a comedian say about Florida: “It’s where old people go to die and then don’t.”

  All of us were scheduled to visit at one point or another, and everyone in the family was, at the time, happily busy. My brother, Doug, had just produced a new film version of Lassie, Come Home. My sister, Nina, was working for the TB Alliance, fighting the spread of tuberculosis around the world. I was getting David Halberstam’s book on the Korean War ready for publication and was also promoting a book about email that I’d written with a friend. Dad was busy with his business representing concert artists: conductors, singers, and musicians. We obsessed about the anxieties and minor tiffs and tiny ailments (toothaches, headaches, insomnia) that all people have. And then there were birthdays to remember and events to be planned and travel arrangements to be made and schedules to be shared. With my family, there was a ceaseless flow of requests, made of one another on behalf of our friends and causes: Could we come to a fund-raiser? Could we make an introduction? Could we recall the name of the woman at the concert who was wearing the red dress? We also bombarded one another with recommendations, often phrased as commandments: You must see … You must read … You must watch … The bulk of these came from Mom.

  If our family was an airline, Mom was the hub and we were the spokes. You rarely went anywhere nonstop; you went via Mom, who directed the traffic flow and determined the priorities: which family member was cleared for takeoff or landing. Even my father was not immune to Mom’s scheduling, though he was given more leeway than the rest of us.

  The frustration among us offspring had to do with how carefully everything needed to be planned. Just as one late plane can throw off the whole operation of an airport, resulting in backed-up flights and people sleeping in corridors, so, Mom felt, any change could throw our lives into chaos. My brother, sister, and I were, as a result, mildly terrified of making even the smallest alterations to plans once they had been discussed with Mom.

  When I called Mom in Florida that February to let her know I’d decided to take an afternoon flight from New York instead of a morning one as we’d previously discussed, she first just said, “Oh,” but I could hear a massive hint of exasperation in her voice. Then she added: “I was thinking that if you got in that morning, we could go see the couple next door for lunch; they leave that evening, so if you’re on the later flight, then you won’t be able to see them at all. I suppose we could ask them over for coffee in the afternoon, but that would mean that we couldn’t go to Hertz to add you to the registration on the car, and then I would need to drive to Orlando to pick up your sister. But it’s okay. I’m sure we can figure out how to make it all work.”

  Mom didn’t confine herself to coordinating our lives. She was also helping to coordinate, almost always at their request, the lives of hundreds of others: at her church, at the Women’s Commission for
Refugee Women and Children (she’d been the founding director), at the International Rescue Committee (she’d been board-staff liaison and founded the IRC’s UK branch), and at all the other myriad organizations where she’d worked or served on boards. She’d been director of admissions at Harvard when I was growing up—and then a college counselor at one New York school and head of the high school at another—and she remained in contact with hundreds of former students and colleagues. There were also the refugees she’d met in her travels all over the world, and with whom she kept in touch. And there were all her other friends, too—who ranged from childhood intimates to people who’d happened to sit next to her on a plane or crosstown bus. My mother was always introducing, scheduling, weighing in, guiding, advising, consoling. Sometimes she said it exhausted her—but it was pretty obvious that mostly she loved it.

  One of the organizations Mom was busiest with was a foundation to help establish libraries in Afghanistan. She fell in love with that country and its people the first time she went there, in 1995, going across the Khyber Pass from Pakistan to report on the conditions of refugees. She went back to Afghanistan nine times, always for the Women’s Commission or the International Rescue Committee (which is the Women’s Commission’s parent organization), to learn ever more about the changing plight of refugees there; then she would come back to the United States and advocate for policies that would help them, especially policies attuned to the lives and needs of women and children. Her trips on behalf of refugees took her not just to Kabul, and not just all over Afghanistan—including to Khost, where she spent the night in a run-down guesthouse, the only woman among twenty-three mujahideen warriors—but all over the world, including to most of the countries in Southeast Asia and West Africa.

  This year, while in Florida, she was in constant contact with a man named John Dixon, an old Afghan hand who knew as much about the country as almost anyone and was helping achieve the vision of a person who knew even more than he did: a seventy-nine-year-old woman named Nancy Hatch Dupree, who for decades had divided her time between Kabul and Peshawar. Mom and John, both of whom had met with Nancy many times in Pakistan and Afghanistan, were working together to form a U.S. foundation to help Nancy raise money for a national cultural center and library—something Afghanistan didn’t have—to be built at Kabul University, and for mobile libraries for villages all over the country, bringing books in Dari and Pashto to people who’d rarely or never seen a book in their own language if they’d seen a book at all. Nancy and her husband, who’d died in 1988, had amassed a collection without rival of 38,000 volumes and documents on the crucial last thirty years of Afghan history. So she had the books; what was missing was money and support.