The End of Your Life Book Club

  “Well, how about when people compliment you for being brave fighting cancer?”

  Mom didn’t even pause. “The brave people are the ones like that young woman who was trying to figure out a way to buy medicine that she couldn’t afford—without letting her mother know how much it was costing.” That would be the woman for whom Mom had bought the medicine—they’d kept in touch. “I’m getting the best and most expensive care in the world, and I just don’t think that’s brave. If I were really brave, I’d do without it, so that the money could go for preventative care or for research.”

  As much as I tried that day, I couldn’t get Mom to admit that she’d ever been courageous. The people she thought were brave were the people she sought to help and serve.

  Mom would often talk about a refugee boy she’d met in a hospital in Afghanistan. He was the victim of a land mine and had lost a leg. She said to him that she brought greetings to him from schoolchildren in New York. “Tell them not to worry about me,” this little boy told her from his hospital bed. “I still have one leg.”

  She’d talk, too, of John Kermue, a Liberian refugee she’d met in a camp where she’d taken his photo. A year later, when he’d heard from Mom that she was returning to Liberia for another fact-finding trip, he realized she wouldn’t be able to locate him because he’d been moved to a different camp. And so he sneaked out and traveled to Monrovia in order to meet her at the airport, managing to convince a cordon of soldiers to let him into the heavily guarded terminal by saying he was there to meet his mother. They told him that if he was lying to them, they would kill him. When Mom got off the plane, she heard a voice shout, “Mom!” and instantly realized what was going on. “Son!” she shouted, embracing him. With her help, he would later come to America to study criminal justice.

  She reminded me about the bravery of a Bosnian family she had met while she was in their country as an election monitor. They had to walk through a heavily land-mined area to get to their polling station but were willing to do so just in order to vote. To accompany them, Mom had been paired with a very young Dutch volunteer—the oldest monitor, Mom, with the youngest one. Mom and her fellow monitor wanted to walk ahead. “No,” the family insisted. “We should walk first. You came to help us, not the other way around. So if anyone gets blown up, it should be us.”

  Then there was her friend Judy Mayotte, who’d had polio in college, taught herself to walk all over again, been a nun for a decade, and then become a world expert on refugees. She was the chair of the board of the Women’s Commission for several of the years when Mom was the director.

  In 1993 Judy was in southern Sudan, helping a community that desperately needed food. An airdrop was planned, and the planes were supposed to come in from one direction. They came in from another. A two-hundred-pound sack of food that was dropped from the sky missed its target and landed on Judy’s leg, crushing it in ten places. Miraculously, a doctor doing relief work was right there: Judy was bleeding so much that at one point she had no pulse.

  First, Judy’s lower leg was amputated in Africa. Then, at the Mayo Clinic, most of the upper leg had to be amputated too. But Judy survived and continued to work with refugees.

  “Fortunately, the leg knocked off was my polio leg,” Judy would tell a Chicago Tribune reporter. “I’ve always been lucky.”

  All of them Mom considered brave.

  “I understand, Mom, and I agree. Those are all amazing stories of courage. But didn’t you need courage to go over the Khyber Pass, that time when you were shot at, when Afghanistan was all but closed? Or to take that Russian helicopter to get out of Darfur with all those unsecured logs rolling around inside?”

  “No, that really isn’t courage,” my mother insisted. “I wanted to go to all those places, so how could that be brave? The people I’m talking about, they did things they didn’t want to do because they felt they had to, or because they thought it was the right thing to do. The courage of that little boy, or the Bosnian family, or John, or Judy—that’s very difficult to fathom.”

  “Okay, what about when you shared a hostel in Afghanistan with those twenty-three mujahideen warriors?”

  “It was much braver of them,” Mom said, laughing. “I think they were terrified of me.”

  It was growing late and a little cold. The chemo was taking a very long time. We both glanced up to make sure that there was enough saline left. Like two streams coming together, the saline had to drip into the same tube as the chemo so that they both could flow into Mom together. If the saline ran out before the chemo did, the nurses warned us—well then, the fluid might burn. That never happened, but it gave us something else to think about and was a merciful distraction. I felt that I was doing something if I simply glanced every now and then at the plastic saline pouch. Just as good kindergarten teachers give each kid a small job—cleaning the chalkboard duster, making sure the rabbit is fed—so, I think, the nurses give family members little things to do so we can feel useful. Watch the saline. Check. Almost done. But so was the chemo.

  “I think the other people who are really brave,” Mom continued, “are people who take unpopular stands. Physical bravery is one thing. And sometimes, of course, physical bravery isn’t bravery at all but people being foolish—especially when they put other people in danger who need to rescue them. Wherever I went on refugee missions, I always checked with the local staff to make sure we weren’t taking unnecessary risks or making them do anything that made them uncomfortable. That’s very important.”

  Soon the saline and the chemo were both gone. The nurse came in to unhook Mom. Usually Mom popped right up after that and gathered her things, and we were on our way. Today she remained in the chair.

  “Are you okay, Mom?” I asked. She looked very tired.

  “I’m feeling a little sad. I know there’s a life everlasting—but I wanted to do so much more here.”

  I didn’t know what to say. So I just said, “I know.”

  “Still,” Mom said, “I have a strong feeling I’m going to have some very good news soon.”

  MOM HAD BEEN increasingly in touch with her old Harvard friend, the one with whom she’d recently reconnected, the one who’d given her Daily Strength for Daily Needs. That was his first great gift to her. As they’d talked over the next few months, he was moved by her stories of Afghanistan and her passion for education. He also loved books as much as she did, maybe more so. Then one day, out of the blue, he told her that he hated seeing her work so hard. So he had a deal to propose: If he gave some money to build the Afghan library, would she promise to take it a bit easier? Yes, she promised him. She would.

  A FEW MORNINGS after the book club meeting when we’d discussed The Painted Veil, my phone rang. Usually I called Mom, but this time she couldn’t wait: she had something urgent to tell me.

  “You’ll never believe it,” she said to me on the phone that morning. “You’ll never believe it. And you can’t say anything. But that friend who doesn’t want me to work so hard on the library …”

  “Yes,” I said.

  “Well, he just told me he’s donating one million dollars to build it.”

  Murder in the Cathedral

  For days after the news of the million-dollar gift for the Afghan library, Mom was as happy and optimistic as I’d seen her since she got sick. By the middle of May, though, she was running high fevers that not even several courses of antibiotics could tame. And a week before she was to leave for Geneva to see my sister and her family, one of Mom’s friends died.

  Of course, Mom would be at the funeral and the memorial service. As we stood in her kitchen, me nursing a tiny, tepid espresso, I asked her if it was depressing going to funerals and memorial services when she herself had a limited amount of time left.

  “Funerals and memorial services are just part of life. And I do know that there is life everlasting.” Usually Mom said believe. Recently, I noted, she said know.

  “And how do you decide if you should go to a service or no
t? I mean, what if you didn’t know the person well, or maybe at all, but only knew the spouse or a child?”

  “If you need to think about whether you should go or not, you should go. But if you can’t go, you can’t. Then you write a nice note as soon as you can.” Mom looked distracted for a second. “Darn, there was something I wanted to tell you and now I’ve forgotten.”

  This wasn’t chemo brain. Mom always had an impossibly long list of things she wanted to tell us. No one could be expected to remember them all. We talked awhile longer, and then her face lit up—she’d remembered the thing she wanted to tell me.

  “Oh, yes. Let me show you something.” She left the kitchen but returned almost immediately, with a printed note card in her hand. It said, “At this very sad time, our family thanks you for your kind expression of sympathy.” Mom had crossed out very sad and inserted the words the Schwalbe in place of our before family.

  “I think this is a really nice way to thank people for their condolence notes,” she said. “But do take out ‘very sad,’ as it sounds a little gloomy, and you should also make it more personal with our name. You’ll want to write something on the inside of your note that acknowledges something they said in theirs. And I know this one is in black ink, but I think you should use blue ink—both for the engraved words and for what you write. The black is too somber.”

  So that’s what Mom had forgotten to tell me and then remembered—how to answer the condolence notes we would be receiving after her death.

  MOM AND DAD went to Geneva in April 2008. She shivered from fever and chills all the way over. While she was there, she was in and out of the hospital, but she was determined to spend time with Milo and Cy—even though her body wasn’t up to it. She had to fly back early. Mom and Dad loved their travels together—seeing new places, going to museums and concerts, meeting friends and friends of friends. It was one of the great passions they shared (though Dad preferred to go only on the more comfortable trips, leaving the refugee-camp and developing-world travel entirely to Mom). So they were both disappointed to be returning home, although not yet willing to give up on the idea of more trips abroad in the future.

  Once home, Mom immersed herself in planning a board meeting for the Afghan library. The million dollars had turned the project from a mad dream into something that would almost definitely happen: it was a third of the money they needed and would allow them not only to break ground on the main library in Kabul but also to fund some of the traveling libraries. Mom, of course, hadn’t held up her end of the bargain. She wouldn’t stop working on it—perhaps she was working even harder than she had been before.

  We had chosen as our next book club selection Jhumpa Lahiri’s new collection of short stories, Unaccustomed Earth, as we’d both loved her 2003 novel The Namesake and her first book of stories, Interpreter of Maladies, which had won the Pulitzer in 1999. Born in London in 1967, Lahiri had moved as a child with her parents to the United States. Lahiri’s immigrant characters often have experienced the same kinds of dislocation that Mom had seen in her refugee friends; many of them grapple with balancing two cultures, trying to preserve the known while embracing the new.

  Lahiri makes the connection between immigrants and refugees explicit as she describes, in the new book, one character who has become a war photographer: “He was reminded of his family’s moves every time he visited another refugee camp, every time he watched a family combing through rubble for their possessions. In the end, that was life: a few plates, a favorite comb, a pair of slippers, a child’s string of beads.”

  The collection begins with a story of a man whose wife has just died, and his visit to his adult daughter and her family. It ends with a cycle of stories about two characters, one of whose mothers dies of cancer. We talked about those stories, but not more so than all the others and not focusing on the deaths or the cancer. In the first tale, the death has taken place before the story begins; in the story nearer the end, the mother, for the longest time, doesn’t want anyone to know she’s ill. The emphasis in both tales is on the survivors—a father and his daughter; a father and his son—and how their changed or changing circumstances bring to center stage their inability to communicate.

  Mom and I discussed the jumbo-size gap that exists between generations in so much of Lahiri’s work, and how tough life can be for the children of immigrants and refugees. We discussed the Lahiri characters as though they were friends of ours, or even relatives. Why didn’t this one say this, or tell someone that, or let anyone know she or he was so unhappy, so lonely, so scared? Lahiri’s characters, just like people all around us, are constantly telling each other important things, but not necessarily in words.

  WHEN WE TALKED about what book to select next, Mom again said that she really wanted to go back to something she’d already read and loved. After some thought, she decided it should be T. S. Eliot’s 1935 verse drama Murder in the Cathedral. Mom had been in the chorus in a joint Harvard and Radcliffe production of this play when she was at college.

  Ever since I could remember, Mom and Dad kept a handsome slipcased copy of Murder in the Cathedral on a special part of the bookshelf, in the center, along with other cherished volumes, including the leather-bound collections—Thoreau, Dickens—that Mom had inherited from her grandfather. The reason this stuck in my mind was that I first encountered it as a child in Cambridge while searching their shelves for a mystery to read. At the time, I was still obsessed with Alistair MacLean but had run through everything by him that I had on hand. Murder in the Cathedral sounded like just the thing to follow Force 10 from Navarone. I read several incomprehensible (to me then) pages before roughly putting it back on the shelf, judging it a work of very limited appeal—akin to a book titled Eton Repointed about fixing the grout in Eton’s stonework that my father loved, which sat near it.

  A FEW WEEKS after choosing Murder in the Cathedral, Mom and I found ourselves sitting in the not-so-nice environs of the urgent-care waiting room, as she had spiked a fever. We were waiting to learn if she would be able to take some antibiotics and go home, or if she would need to stay in the hospital. We’d both finished Murder in the Cathedral. I asked her whether it had been nostalgia that made her want to read the Eliot play again. She said it wasn’t that at all. She’d wanted to revisit it for two reasons: the beauty of the language and the character of Thomas à Becket, a man who accepts martyrdom rather than ignore his conscience. “I find the play very inspiring,” she said.

  As we waited for her to be called to the examining room, Mom told me that when she’d recently been talking about the courage to take an unpopular stand, it was Becket she’d had in mind. Then, as we continued to sit there, with all the urgent-care activity around us—people pacing or quietly moaning, nurses rushing in and out—she added, “He’s also able to accept death. He’s not happy about it, but he’s perfectly calm. When I stop all this treatment, it will be because it’s time to stop.”

  “Are you worried about how you are going to make that choice?”

  Mom shook her head. “Not at all. I’m sure the doctors will let us know.”

  I wasn’t so sure of that. Mom had phenomenal doctors, the best, but this was the trickiest area of all. How does a doctor tell you that it’s over, that there are things they could do but probably shouldn’t, and that if your aim is quality of life and not quantity of life, there simply are no good next treatments? Many doctors simply avoid this conversation.

  I know that doctors have some patients who beg them for the truth, no matter how grim the prognosis, and who assure their doctors that they can take the harshest news, and who say they have no desire for heroic and painful measures that will allow them to eke out a few more weeks or months. But many of these same patients end up being the ones who can’t bear to hear the truth, and who, near the end, want to do everything possible and even painful to postpone death, if only by days. What could be more human than to want to live?

  Dr. O’Reilly had never given Mom a timetable. She li
stened to what Mom wanted, prescribed the best treatments she could, and adjusted them, balancing their efficacy and side effects according to Mom’s desire to have as much good time left as possible, not as much time as possible regardless of whether it was good or not. Our visits with her were confined to discussions of how Mom was feeling and whether the treatment was working. We only looked ahead far enough to schedule new scans and to plan Mom’s treatments around trips she wanted to take—London, Geneva to see the grandchildren, Florida. Dr. O’Reilly would help her take as many of these trips as possible.

  Soon it was time for Mom to see the urgent-care doctor who would evaluate her; I was left in the waiting room, wondering whether the doctor would tell us Mom needed to stay or could go home. There would be no ambiguity. It would be one or the other.

  My thoughts returned to Unaccustomed Earth and Lahiri’s skill in capturing the subtle ways that people communicate or don’t. As a reader, you’re often inside one or more characters’ heads, so you know what they’re feeling, even if they can’t exactly say it, or they say it so obliquely that the other characters don’t catch it. Readers are frequently reminded of the gulf between what people say and what they mean, and such moments prod us to become more attuned to gesture, tone, and language. After all, we each reveal ourselves through a dizzying number of what poker players call “tells”—verbal and visual clues that display true intention to anyone observant enough to notice them.

  Mom was a reader and a listener. When would it be time for Mom to stop the treatments? I thought back to her exact words. She hadn’t answered me by saying that she was sure the doctor would “tell” us. What Mom had said was that she was sure the doctor would “let us know.” The important thing was to pay attention.

  AS IT TURNED out, Mom would spend six days in the hospital with a raging infection. The good news was that a recent scan had shown that the tumors, though no longer shrinking, weren’t growing. The other good news was that it was now spring. The return of warm weather had a salutary effect on Mom, even if she could only glimpse it from a hospital window. The infection had been caused by a blockage in the stent that kept bile flowing between Mom’s pancreas and liver; to fix the problem, they needed to slip a plastic sleeve inside the stent; and it took IV antibiotics and two blood transfusions before Mom was well enough to leave.