The End of Your Life Book Club

by Will Schwalbe

  Books that she hadn’t read also came in multiples. Then she would give one to me and keep one for herself—or at least for herself until she’d finished it and could give it away.

  We started January with The Reluctant Fundamentalist, a novel by a thirty-seven-year-old author, Mohsin Hamid, who had been born in Pakistan but spent some of his childhood and then his college years and young adulthood in the United States—at Princeton and Harvard Law and working as a management consultant in New York—before moving to London in 2001. Two people had given Mom this book for Christmas, even though it had been published a year before; clearly, it was a book for her. Mom raced through it in hours and we talked about it for hours, wrestling with the enigmatic ending. It’s a novel about a young Princetonian, originally from Pakistan, who makes every attempt to fit in to New York City but winds up returning to Pakistan. It was just the kind of book Mom loved—a monologue that allows you to get to know a character in his own words. The events of September 11 also play a major role in the book. Everyone is looking for a return to something—a dead boyfriend, a land where he’ll be accepted—but it’s clearly impossible to go back. Too much has happened in our time, our lives, and our countries.

  As for the novel’s troubling ending, Mom and I had totally different opinions of it. We were back in the outpatient center at Memorial Sloan-Kettering when we discussed it, and the waiting room was packed; the only seats we could find were in the television section. We talked in whispers so as not to disturb the people around us who were watching—and occasionally glanced at the screen, which was mostly filled with bad financial news from around the world.

  We argued about The Reluctant Fundamentalist as much as we argued about anything that year. At the end of the novel, it’s pretty clear that one of two characters is going to die. It’s just hard to figure out which one. I thought that there was one ending and that I just couldn’t parse it. Mom thought the author intended the ambiguity, and which ending you chose betrayed something about you. I’ve now come to believe that Mom was right, but at the time I got somewhat sulky about it.

  Even if it took a while for me to accept that I would never be certain about how it concluded, Hamid’s novel immediately made me reevaluate whom I could believe and what I could trust, my own prejudices and those others had about me—on a personal level, but also globally. Reading it while David Rohde was still missing was particularly poignant. David would not, Mom told me, have gone off with someone he didn’t trust. He wasn’t foolish. And his knowledge and instincts about the region were both first-rate. Even with that, someone could make a terrible mistake simply by being insufficiently paranoid. How then were the politicians to know whom to trust in the region? Or the military commanders? And how could the people in the region know which of us to trust—which countries? The Russians? The Germans? The French? The Americans? And even then—which Americans?

  I reminded Mom of my second-grade homeroom teacher, Mrs. Williams. It was 1969, and she would say to us when we were noisy or aggressive, “Boys and girls, if we can’t get along with each other, then how are we ever going to get along with our brothers and sisters in North Vietnam?” Even as a second grader, I thought it sounded a bit naïve. But of course she was right.

  I asked Mom if she really had any hope at all for Afghanistan and its neighbors. “Of course I do,” she said. “The thing is, you can’t just talk to people. We learned that. You have to work with people—that’s how you find out more about them. You can still be wrong. But you just know a lot more that way. That’s true no matter where you are.”

  “But how do you know which people are the right ones to work with? How do you keep from making a mistake right from the start?” I thought of all the trips Mom had made as head of the Women’s Commission—to Monrovia while Charles Taylor’s rebel forces were attacking; to Sierra Leone and Guinea and Côte d’Ivoire and all the choices she and her colleagues had needed to make about whom to trust.

  “You don’t always. And sometimes you think you do and you’re wrong. But you travel with them, you continue to work with them, you see their humanity, and you pay attention to the stories they seek out. Do they talk to people? Do they listen? And then you use your judgment—do they make sense? And if you still don’t know enough, you learn more. But you can’t do nothing.”

  BAD NEWS CAME in Dr. O’Reilly’s examining room in the middle of January 2009. The tumors were again growing rapidly. Though they still weren’t as big as they were when Mom first started treatment, the new chemo was no longer holding them back. It was time for yet another combination. There’s not much furniture or decoration in those examining rooms—nothing to distract you. The floors are linoleum; the chairs, plastic. There’s the tub for used “sharps”—it has the biohazard glyph on it. Steel sink, paper towels. Examining table. Curtain. When she heard the bad news, Mom looked at Dr. O’Reilly as if to assure her that it was okay, that Mom was okay, that she knew it wasn’t the doctor’s fault.

  They would start the new treatment that very day. Dr. O’Reilly recited the side effects, which sounded pretty much like the side effects of most of the previous treatments: numb fingers, maybe a rash, diarrhea, mouth sores, hair loss. Mom made a note to get her wig back from the fellow who was supposed to be fixing it.

  “But we’re going to make sure to adjust the dose, and I don’t think the side effects will be difficult for you. Certainly nothing like the mouth sores you got from the Xeloda. And there’s no reason you can’t go to Florida as planned. I know how much you’re looking forward to the weather.”

  “That’s wonderful that I can go to Florida,” Mom said. Then she added, “I’m glad to know that the mouth sores won’t be bad. I didn’t like them at all.” She said this as though mouth sores were a matter of taste, something some people actually enjoyed.

  “No, I expect not,” Dr. O’Reilly said with a smile. “They’re miserable, aren’t they?”

  “But the rinse you gave me helped a lot,” Mom added.

  “And do you have any other questions?” Dr. O’Reilly asked.

  Mom shook her head no.

  “Well, I have one more for you,” Dr. O’Reilly said. “Will your grandchildren from Geneva be coming to visit in Florida?”

  Mom beamed. “Oh yes, and the Paris one and New York ones as well.”

  On the way back to the waiting room, Mom said she’d expected the news about the tumors. She could feel them growing. So what she was focusing on was going to Florida, having us all come and visit, seeing her friends there, and being warm.

  That day at chemo, we talked once more about the ending of The Reluctant Fundamentalist. “I just really want to know which character dies. I’ve read the ending again and again,” I said. “I hate not knowing.”

  “I do too. That’s why I always read endings first. But sometimes you just can’t know what’s going to happen, even when you know everything there is to know. So you prepare for the worst but hope for the best.”

  The weather was not great when we finally left Sloan-Kettering. It was a bitterly cold January day. But Mom still insisted on waiting for the bus, so I waited with her.

  The Year of Magical Thinking

  A few months after Mom was diagnosed with pancreatic cancer, so was the actor Patrick Swayze, star of Ghost and Dirty Dancing. He was much younger than Mom, and she’d liked his films, but she’d never thought all that much about him—until he had the same cancer. There was to be a Barbara Walters interview with him right before Mom was to leave for her month in Florida. I forgot about it until I was channel surfing and stumbled upon it. It was very powerful because, just like Mom, Swayze was completely comfortable stressing his hope and his resolve and his dedication to fighting the cancer—all the while acknowledging that he knew the cancer would most likely kill him.

  As soon as the show was over, the phone rang.

  “Wasn’t he wonderful?” Of course, I knew Mom was talking about Swayze. “That’s exactly what I’m going through.” She wa
s particularly impressed by how he spoke frankly and without embarrassment about the severe gastrointestinal symptoms caused by the treatments. Mom, too, spoke frankly of these—the cramps and diarrhea and constipation—but noted that it often made people uncomfortable. Still, she persisted—her time in the refugee camps had taught her not to be squeamish about such things, and she didn’t think other people should be either.

  Throughout everything, Mom hadn’t talked to or met other people with pancreatic cancer. It was tough to do so because most don’t last more than a few weeks or months. Now she felt she had met someone else, even if only on television. She would take the tape to Florida, she said, and show the Swayze interview to all her friends there.

  The day Mom arrived in Vero Beach, she was so ill that she thought she’d made a terrible error coming at all. She had fever, chills, diarrhea; her feet and hands were numb; she was nauseated. But a day later, after recovering from the indignities of air travel—all the standing around and taking shoes on and off and waiting in hot corridors or amid too much air-conditioning—she felt a lot better. And in a rare moment of ill humor, she briefly railed against people who used wheelchairs at airports as a way of cutting to the front of screening queues when they really didn’t need them, leaving people like her standing in long, slow-moving lines.

  “Mom, you know you could use a wheelchair at the airport?” I reminded her on the phone.

  “But there are people who really need them,” she answered. (Mom was still giving up her seat on buses for older people, pregnant women, and even children—because she knew they didn’t have the strength to hold on when the bus swerved. She glared at healthy young adults who would never think of giving up a seat for anyone.)

  As always, Mom had an elaborate schedule for Florida—and a new set of medical and nonmedical routines that gave structure to her days. As soon as I arrived at the Vero Beach condominium she’d rented, she filled me in. My being with her allowed Dad to go back to New York for a week, as he’d done the year before, to look after his business. David would be coming to join me in a few days. My siblings and their partners and all the grandchildren had already visited.

  “First thing in the morning, we see the manatees. Adrian, Milo, Lucy, and Cy all loved the manatees.”

  So every day began with this ritual. After a cup of coffee that Mom had already made—no matter how early I was up, she had awoken before—we walked past the fountain and through the gate and across the street to the harbor. Then out on the pier, to the edge of the pier, to wait and see if any of those glorious, misshapen gray lumps of sea creature would show up.

  “I really hope the manatees come today,” Mom said.

  It had been, I realized then, a year and a half filled with many odd superstitions that would come over me suddenly—what Joan Didion would call “magical thinking.” All I could focus on was the following nonsensical equation: If the manatees came, it would be a good day. Mom would feel “better.” If they didn’t show, if they had been there before us or came after, then it would be a “not great” day. I stared deep into the water, hoping to see one. I looked over at Mom, who was pursing and unpursing her lips, the way women do who are trying to even out their lipstick. But she wasn’t wearing lipstick—her lips were dry and cracked and must have been painful in the wind.

  Then I saw one manatee and then another, and then one more. The harbor was filled with a jumble of powerboats, the hulls of which were linen-crisp against the murky water and the bright blue of the sky. The boats were still, unmanned. The manatees moved slowly around and between them. But in the distance were boats at full power, churning the water. And when you stared at the backs of the manatees, you could see great gashes that had scabbed over.

  “They get cut up by the boats,” Mom said. “It’s terrible.”

  After going to see the manatees, we had breakfast back at the condo. Mom would sit with me while I ate. She would try to eat some cereal, or an English muffin, but was having trouble with her appetite. We would later get The New York Times. Over breakfast we read the local paper, with Mom paying special attention to houses and apartments for sale.

  “We could buy a small condo down here and everyone could use it. The kids would love it.”

  After breakfast came the trip to the computer center, where Mom would check her email; then the liquor store (where I bought myself wine for the evening or a small bottle of whiskey); then the gourmet store, for the evening’s dinner; and then the market. There might be dry cleaning to pick up.

  And so it was, with afternoons for napping and reading, until four P.M. That was Mom’s favorite time. When the clock turned four, on the dot, not before, we headed out to walk to the beach. The book club had gone mobile. Mom loved the physical beauty of the beach, but it wasn’t complete for her until it had a smattering of people walking or jogging alongside their dogs. Mom had a nodding acquaintance with many of the people and more than nodding with some.

  “Wait until you see, there’s the most beautiful cocker spaniel. And the woman who owns it is from San Diego and works with children who have learning disabilities. Her daughter is in the army.”

  I didn’t want to see the cocker spaniel. Or meet the woman from San Diego. Or hear about her daughter. I didn’t want to talk to anyone other than Mom. I wanted to talk about books with her, or just stare at the ocean, drugging myself on the sound of the gentle waves. Sure, I like dogs. But all those strangers with their lives and stories made the landscape less beautiful for me, not more. They marred it. And as the clock ticked, I resented other people for interrupting the limited number of conversations we had left.

  How, I wondered, could anyone always want to talk to everyone? Waiting for chemo, in cabs, in lines at airports, at the market, in refugee camps and black-tie dinners. “Aren’t there some times, Mom, when you just want to be by yourself, or be alone or talk to people you already know?” I asked. “It seems like you always want to meet people everywhere.”

  “I don’t always want to meet people.”

  “That’s just not true, Mom. You’re always wanting to meet people.”

  “No, sometimes I don’t. But it’s not very hard to make yourself. You can’t know if you want to meet someone until you’ve met them, until you’ve started to talk and, most important, asked them questions. I’ve met the most wonderful people that way. And I don’t see other people as interruptions—they give us more to talk about. Just the way books do.” She paused. “But I don’t always want to meet people.”

  Suddenly, padding up to us, ears flopping in the afternoon breeze, came a cocker spaniel. And behind it a woman.

  “Hi, Susan. This is my son Will.”

  “Nice to meet you. I’m just in from New York,” I began. And then: “Mom tells me you work in San Diego with special needs children. How is your daughter? She’s in the army, right?”

  ONCE WE WERE back at the house, I tried to remember how old I was when I’d come home from school and asked my mother how her day was, or inquired of my dad whether, say, that slight rasp in his voice meant that perhaps a cold was coming on. I do remember asking them such things once I went away to boarding school, but I would do so in a perfunctory way, at the end of the conversation.

  It’s incredibly hard for me to ask and to listen, really listen, and not try to prompt an answer that feeds my innate sense of optimism, my hope that it’s always possible for things to be a little better, as opposed to a steady slide from worse to still worse. And what mother wants to disappoint her son, to be feeling worse when he so desperately wants her to be feeling better?

  I’d brought a copy of Joan Didion’s The Year of Magical Thinking to Florida. Mom and I had both read it when it came out a few years before. I wanted to read it again. Didion writes about her life after the sudden death of her husband, which she describes in the first few pages—and about their daughter, who becomes deathly ill and then, seemingly, recovers. (Tragically, Quintana Roo Dunne would later die, of pancreatitis, but it would be a
fter her mother’s book was written and just as it was about to be published.) The Year of Magical Thinking is a book about death and grief and illness.

  Didion contrasts her grief after the death of her husband with how she felt after the death of her parents:

  Grief, when it comes, is nothing we expect it to be. It was not what I felt when my parents died: my father died a few days short of his eighty-fifth birthday and my mother a month short of her ninety-first, both after some years of increasing debility. What I felt in each instance was sadness, loneliness (the loneliness of the abandoned child of whatever age), regret for time gone by, for things unsaid, for my inability to share or even in any real way to acknowledge, at the end, the pain and helplessness and physical humiliation they each endured.

  I found myself immersed in the book and turning frequently to that passage. Mom was not dead; she was very alive. I was sad but not yet lonely. And I had an opportunity to do and say things so that I wouldn’t feel regret; I had the chance to acknowledge and assuage Mom’s pain and helplessness and physical humiliation.

  That’s easier said than done. Mom was both dying and living. She wanted to talk about her friends and her work and the grandchildren and real estate and the books we were reading (especially the Didion, which she reread as soon as I was finished) and about music and movies and the traffic and funny stories and old times and about my business and … the list was huge. She wanted to spend time with me and all her family but meet new people too.

  I came to see great wisdom in Didion’s choice of words: share and acknowledge. And I realized I could share by talking about anything Mom wanted to discuss, or by sitting quietly with her, reading. And I could acknowledge without probing or dwelling or fixating.

  It had been a good day. Soon it was dark, and I made myself a drink. We heated the turkey tetrazzini from the gourmet store. After dinner, we watched a documentary about the political operative Lee Atwater. We both loved it—but it ended with his death from cancer and some gruesome footage of how transformed he was by the disease.