The End of Your Life Book Club

by Will Schwalbe

  As I sat on the ground and watched, I realized that the boy rebels who had hurt me must have families somewhere. I thought back to the rebel who’d said he wanted me to join them in the bush. “Would he have asked me to kill?” I wondered.

  At the book’s end, the author describes how she was offered the opportunity to meet Ishmael Beah, the former child soldier from Sierra Leone who had written A Long Way Gone. At first she was unsure she wanted to or could, but then impulsively decided she would. And Beah wound up writing the foreword to her book. He, too, was present at the Women’s Refugee Commission lunch.

  When the speeches were over, I waved goodbye to Mom, who was not yet ready to go home. She was absolutely mobbed by friends and colleagues who wanted to tell her how much they loved her and how happy they were to have her there. There’s no price I wouldn’t have paid for Mom to be at that lunch, or to have witnessed it myself and to be able to hold that image in mind: a small, gray-haired lady surrounded by people she adored and admired, people who felt exactly the same way about her.

  IN THE DAYS after the lunch, Mom got steadily sicker. It’s as though she’d tapped into some hidden reserve of energy to get herself through it, and now there was little left. When I went to see her at home the following week, I found her biting her lower lip. She looked particularly uncomfortable. Still, she had several things she wanted to talk to me about.

  “When I had my first MRI, soon after I got sick, they warned me that the sound would be terrible, the clanging of the machine, and that many people found it frightening and unnerving. But really, I told them afterward, it’s nothing like the sound of the Russian helicopters that used to take us around to the refugee camps in West Africa. Still, it got me thinking that I might want to write something. Something about how lucky those of us with health care are, and how much we take for granted—and about that remarkable young woman who wrote The Bite of the Mango and who spoke at lunch. I’m not sure what—but help me think.”

  Mom had The Bite of the Mango open on the table in front of her. She’d flagged a section in which a friend of the author who works for the Canadian government tells her, “In North America, a lot of kids take getting an education for granted. But when you’re from a poor country, you know what an education can do. It can open doors. You may not have hands, but you still have your mind. And I think you have a very sharp mind. Make the most of what you have and you will make your way in the world.”

  “I also want to write about refugees and courage,” Mom said, “and get people to imagine what it would be like if they had to flee right now and leave everything they know and love behind. And I want to write about young people all over the world and how amazing they are—and how little they are trusted or often trust themselves. And about refugee boys—how we need to find things for them to do. And about education in wartime—how it’s the most important thing—it’s what gives children stability and hope. Even when bombs are falling, you need to find a way to keep kids learning. But I don’t know if I feel well enough to write anything right now.”

  “I could help you write it.”

  “You don’t have time for that.”

  “But I do. And I’d like to.”

  “I’ve been thinking too,” Mom continued, “about all the books we’ve been reading. There must have been other books you wanted to read more than the ones I kept giving you.”

  “Really, no. Well, maybe at first. But I’ve loved all of it. Even Joseph and His Brothers.”

  “Me too,” Mom said. “But you didn’t read all of Joseph, did you?”

  “No, but I still might.”

  “You really don’t have to,” Mom said. It seemed like an odd thing to say. I knew she’d loved that book, even though she at first found it daunting. Then she added: “You’ve done enough. You’ve all done enough.”

  We sat without talking for a while. I was aware that I could hear Mom breathing a little more heavily than usual. She closed her eyes—this time clearly not sleeping but concentrating, as if trying to remember something. Or maybe she was in pain.

  “Are you okay, Mom?” I said. I wanted to say so much more—about the book club, about all she’d done for me, about how grateful I was for everything—but it didn’t seem the time, it just never seemed the time. And I knew I would start to cry and didn’t want to. Not then. Maybe I didn’t want Mom to have to comfort me. Or maybe I was scared that once I started, I wouldn’t be able to stop.

  “I’m fine. I just need a second,” Mom said, and abruptly got up and left the room. Ten minutes passed and I wondered if I should check on her, but when she came back, it was with a tea tray. Not mugs with bags, but a teapot, strainer, two cups, milk, sugar—even a tea cozy. I immediately got up and took it from her to place on the table, but Mom poured. “I think some tea will help.”

  The tea did help. After a few sips, she seemed a little better. “Sometimes,” she said, “it makes me feel better just to do something, even to make tea.”

  “And you said there were other things you wanted to talk to me about?” I asked.

  “My obituary. I’ve put together my résumé, and a list of the places I’ve been, and some other things. I know it will be time-consuming, but I’m afraid that you’re going to have to write it. And I also have letters I’ve written, one for each of the grandchildren, for when they get older. I want them to know how much their grandmother loved them and how special they all are. I’m trusting you to keep the letters safe and make sure they get them.”

  At that moment, my brother arrived.

  “Good. Now that your brother is here, I want you both to have another look at the wig. I think it’s better. Now it’s not as dark. And it’s not as big, Also, Doug, I want to talk to you more about the service for me: what hymns and what readings.” Mom and Doug had already had several conversations about this after their initial ones.

  “And one other thing. I’m really trying to make it clear to people that if they’re going to cry all the time, then they can’t come over. I’m getting ready, but I’m still here.”

  ON A SATURDAY in May 2009, David and I went for the first time that season to visit our friends Tom and Andy, who’d hosted the first Thanksgiving after Mom’s diagnosis, at their house on Fire Island, a gorgeous sunbaked spit of land. David and I call ourselves perma-guests: We are there constantly, but Tom and Andy don’t seem to mind. An hour after we arrived, the phone rang. It was Larry Kramer, a great friend of Mom’s from the theater world in the 1950s, and of mine from when I was in college and the two of us, along with another friend, wrote a television show together. I’d become very happily entangled in Larry’s complicated life as an author and a gay activist, helping him place the rights to his books and edit his massive new novel. David and I had also become very close to his partner, another David. It was one of those calls where you can hear, instantly, in the voice, that all is not well.

  “Will, it’s Larry,” he began.

  “Hi, Larry. What’s up?”

  “Rodger killed himself. He drove from Denver to a town in New Mexico called Truth or Consequences, and he shot himself in the head.” Larry was devastated; he and his David and Rodger had been best friends.

  As soon as Larry and I finished talking, I called Mom. It had been eighteen months since that first call when Rodger’s predictions had so frightened her. In our most recent conversations with Rodger, he’d said that his back continued to bother him terribly and that no surgery had ever done enough to help. He’d also talked to Mom about the loneliness of working on gay rights, how no one in the movement was very nice to anyone else. Mom had suggested he do refugee work—no matter how bad things were in the field, the staff of all the various organizations really looked after one another. More than anything, though, both Mom and I thought he was depressed.

  According to Larry, Rodger had always said he would kill himself one day—and that he wanted people to know that if he ever did it, it was because he wanted to. “Yes,” Mom said. “People may want to
kill themselves. But no one wants to be depressed, or in pain, or lonely, or hurt. When this is all too much, I’m going to choose not to have anything more done for me. But, of course, I’d rather it didn’t all get to be too much. Rodger was such a wonderful man and did so much for so many people. I’m going to church tomorrow, Will. And I’m going to pray for him.”

  I couldn’t think of anything to say, so I asked Mom to remind me when the next appointment was with Dr. O’Reilly.

  “Friday. After a new scan on Wednesday. I have to decide between now and then if I’m going to do an experimental treatment—that is, if a space is open. I’ve sent all the paperwork on to your sister. I’m thinking probably not. The one they have in mind is a stage one trial—so they don’t really know what dose to give or if it does anything yet. And it involves being in the hospital, and lots and lots of tests. I want to do it if it can help other people—someone has to do these trials. But I also don’t want to spend whatever time I have left in hospitals if I can help it. We’ll see what the doctor and your sister say, and then I’ll make up my mind.

  “But between now and then, I’m going to see the Mark Morris production of Romeo and Juliet. It’s three hours, and I know I probably won’t feel up for it, but if I’m going to feel rotten, I’d rather feel rotten watching something wonderful than just sitting in the living room, looking at the wall. Plus, it’s that funny Prokofiev version. You know what happens in his version, don’t you?”

  “I don’t,” I said. “What happens?”

  “It ends happily! The friar alerts Romeo to the fact that Juliet isn’t really dead, just drugged, and both Romeo and Juliet live. I think I could use a cheerful Romeo and Juliet right now. I think we all could.”

  The Elegance of the Hedgehog

  The Elegance of the Hedgehog by Muriel Barbery came into our lives just when we needed it. Mom, for the first time since I can remember, hadn’t been able to find anything she wanted to read. She picked at books—reading a chapter or two and then leaving them by her bedside or in the lobby of her building for her neighbors. I think this was because she was feeling rotten but wouldn’t own up to it. We read some poetry. We both loved Mary Oliver’s poems—their thoughtfulness and introspection, the way they make you look at the natural world differently. We especially liked the poems that show some irritation with how impatient we all can be, and with our lack of appreciation for the world around us. We read some Nikki Giovanni poems, and some Wallace Stevens. And then someone told Mom about Barbery’s The Elegance of the Hedgehog. The author, a philosophy teacher, was born in 1969 in Casablanca and now lived in Japan; the book had been published in France a few years before.

  First Mom fell in love with the setting of the novel, the building at number 7, rue de Grenelle, which Barbery so simply describes: the eight luxury apartments, “the old wood-paneled elevator with a black grille and double doors”; and then Mom fell for the “very grand and very beautiful” apartment of one of the characters, Monsieur Ozu. Our co-narrator, the concierge, expects a Japanese interior, “but although there are sliding doors and bonsai and a thick black carpet edged with gray and objects that are clearly Asian—a coffee table in dark lacquer or, all along an impressive row of windows, bamboo blinds drawn at various levels, giving the room its Eastern atmosphere—there are also armchairs and a sofa, consoles, lamps, and bookshelves, all clearly European.” In the novel, the apartment is an oasis—of civility, kindness, and elegance.

  It may sound strange to fall for an apartment in a novel, but that’s exactly what Madame Michel, the concierge, does—not out of avarice but out of awe and respect for the values that created and would be needed to curate such a place. When she enters the apartment, she’s able to imagine a different kind of life for herself.

  Mom loved talking about real estate, and I think it was in the same way that Madame Michel loved Monsieur Ozu’s home—the fantasy of imagining a different life for yourself, or your same life lived differently. Whether the real estate was real or fictional was almost beside the point, because Mom created her own fictional narratives around real places as well as imagined ones. She was constantly looking through circulars and brochures at pictures of houses and apartments. When her eye settled on something she liked, she would start planning.

  “We could use this every summer—just for a few weeks—and rent it out the rest of the time. Nico and Adrian will love the loft. There’s a hotel nearby for you and David”—somehow David and I usually wound up in the imaginary plans in a hotel nearby, which was fine with us, as I love hotels and I could then join in the planning, adding details about how we would walk over in the morning for a cup of coffee, but still be able to go back in the afternoon for a nap and a trip to the spa—“and a bedroom for Milo and Cy. And Lucy will love the pullout sofa because it’s in the dayroom and the sun streams in …”

  In her last years, as we sat waiting for doctors or chemo, the houses in the real estate section that we looked at were mostly near New York City. But sometimes, depending on what book we were reading, Mom looked farther afield: the Dalmatian Coast or Botswana or the Black Forest or Surrey or Provence or Hua Hin.

  The Elegance of the Hedgehog placed Mom and me squarely in Monsieur Ozu’s Paris apartment—or perhaps another, similar one. We started to plot our family’s life there. We worried about Dad and the tiny elevator, so thought a second-floor apartment (or rather, first, in the European fashion) would make sense. Proximity to museums was key, of course, and the grandchildren would need to be near a park—the Luxembourg Gardens, perhaps. And if the novel teaches you anything (and of course it teaches you much more than this), it’s that traffic can be a problem. The children weren’t to cross the Boulevard Montparnasse by themselves under any circumstances—at least not until they were ten or so.

  We redecorated all sorts of literary apartments and fit our lives into and around them. Never movie apartments or TV apartments—those spaces were too literal, too fleshed out, with no room for the imagination. We went back again and again to a room with a view of the Arno (it would be heaven to stay there two weeks before heading up to Fiesole) or palazzos in the Venice of Donna Leon. And there were always the details—that’s what kept it interesting. Just how many nights would we stay? Would we eat in or out?

  But as we were falling in love with Barbery’s building, we were also falling in love with her characters: Madame Michel, Monsieur Ozu, and Paloma, a jaded little girl bent on both committing suicide and also setting her apartment on fire before she turns thirteen. The Elegance of the Hedgehog is, in many ways, a book about books (and films): what they can teach us, and how they can open up worlds. But it’s really, like most great books, about people—and the connections they make, how they save one another and themselves. When Madame Michel tries sushi for the first time, she experiences a form of ecstasy. And in the conversation that follows, she gets more than ecstasy—she gets absolution, and she is able to bestow it on Paloma, too.

  It’s not giving away too much, I hope, to say that the novel ends in death—but also in a kind of reverie about life. And just as Barbery ends with a paradox—the “always” that lives in “never”—so Mom and I found ourselves discussing a related one: even though The Elegance of the Hedgehog leads to a death, the experience of reading the book is even more joyful than seeing a Romeo and Juliet where they both live. I asked Mom why she thought that was, and she pointed out that joy is a product not of whether characters live or die but of what they’ve realized and achieved, or how they are remembered.

  “I’m not scared to die,” she said suddenly. “But I would like this one more summer.”

  ON JUNE 5, we went to the doctor. We so wanted news that wasn’t entirely bad that we at first not only presented an optimistic spin to others but also believed it ourselves. Mom, as always, wrote the blog entry in my voice for me to post. She composed the entry right after we left Dr. O’Reilly’s office:

  Very briefly, there was both bad and good news when Mom saw the doct
or today after her scan on Wednesday. The bad news is that the tumors are growing; the good news is that there is a spot open in a clinical trial for a drug that may help slow the growth of tumors. Mom can start at the end of June (she will decide about that after reading the material and talking to the doctor next week). This also means that there is no more chemotherapy.

  More after she and the hospital have made a decision.

  As always, thanks for all your care and support.

  Mom then consulted with my sister and read through the materials and quickly came to a realization: the trial made no sense for her. It would start early in July, just as Nina and Sally and Milo and Cy were arriving for the summer. Mom had always said she would choose quality of life over quantity; the procedures would be invasive and time-consuming, and even if there was reason to hope that this trial might slow the growth of the tumors, it was not remotely any kind of a cure.

  “I feel very selfish,” Mom told me. “I know they need people for this trial. But it’s not for me.”

  “Mom, I don’t think that’s selfish. And maybe your not participating frees up a spot for someone else—so maybe it’s the opposite.”

  All through Mom’s illness, it was hard enough to persuade her to do something with the logic that it would help her—we often had to make a case for the greater public good. She liked the idea that someone else would be able to take part because she’d declined.

  June 2009 would be a month of turning points. Mom’s decision not to go ahead with the trial meant that she would no longer be taking any treatment whatsoever to slow the growth of the tumors, as she’d exhausted all the traditional chemotherapies, and the others, like the monthly mitomycin she’d tried, had too many bad effects and not enough good ones. From now on, emphasis would simply be on making Mom as comfortable as possible as the tumors grew.