The End of Your Life Book Club

  I realize now that all of us had reached a mad, feverish pitch of activity in the days leading up to Mom’s diagnosis. Dinners, drinks, visits, benefits, meetings, scheduling, picking up, dropping off, buying tickets, yoga, going to work, cardio at the gym. We were terrified to stop, stop anything, and admit that something was wrong. Activity, frenzied activity, seemed to be the thing we all felt we needed. Only Dad slowed down, and that wasn’t until he was trapped in a hospital getting intravenous antibiotics. Everything would be all right, everything would be possible, anything could be salvaged or averted, as long as we all kept running around.

  While I was at the Frankfurt Book Fair a week later, just before heading off to co-host a table full of publishing pals for dinner, my mother called to tell me that she almost certainly had cancer. The hepatitis wasn’t viral; it was related to a tumor in her bile duct. It would be good news if the cancer was only there, but it was far more likely that it had started in the pancreas and spread to the bile duct, which would not be good news at all. There were also spots on her liver. But I was not to worry, she said, and I was certainly not to cut my trip short and come home.

  I can’t remember much of what I said, or what she replied. But she soon changed the subject—she wanted to talk to me about my job. I’d recently told her that I’d become weary of my work, for all the same boring reasons privileged people get sick of their white-collar jobs: too many meetings, too much email, and too much paperwork. Mom told me to quit. “Just give two weeks’ notice, walk out the door, and figure out later what to do. If you’re lucky enough to be able to quit, then you should. Most people aren’t that fortunate.” This wasn’t a new perspective that came from the cancer—it was vintage Mom. As much as she was devoted to intricate planning in daily life, she understood the importance of occasionally following an impulse when it came to big decisions. (But she also recognized that not everyone was dealt the same cards. It’s much easier to follow your bliss when you have enough money to pay the rent.)

  After we hung up, I didn’t know if I would be able to make it through the dinner. The restaurant was about a mile from my hotel. I walked to clear my head, but my head didn’t clear. I confided the news about Mom’s cancer to my co-host, a good friend, but to no one else. I had a feeling of dizziness, almost giddiness. Who was this person drinking beers and eating schnitzel and laughing? I didn’t allow myself to think about Mom—what she was feeling; whether she was scared, sad, angry. I remember her telling me on that call that she was a fighter and that she was going to fight the cancer. And I remember telling her I knew that. I don’t think I told her I loved her then. I think I thought it would sound too dramatic—as though I were saying goodbye.

  When I got back to my hotel after dinner, I looked around the room and then out the window. The river Main was barely visible under the city streetlights; it was a rainy night, so the roadway glistened in such a way that the lines between the river, the sidewalk, and the street were obscured. The hotel housekeeping staff had folded my big, fluffy white duvet into a neat rectangle. Beside my bed was a stack of books and some hotel magazines. But this was one of the nights when the printed word failed me. I was too drunk, too confused, too disoriented—by the hour of night, and also by the knowledge that my family’s life was changing now, forever—to read. So I did the hotel room thing. I turned on the TV and channel-surfed: from the glossy hotel channel to the bill channel (had my minibar item from the night before really cost that much?) to Eurosport and various German channels, before settling on CNN and the familiar faces and voices of Christiane Amanpour and Larry King.

  When Mom and I later talked about that night, she was surprised at one part of my story: that I had watched TV instead of reading. Throughout her life, whenever Mom was sad or confused or disoriented, she could never concentrate on television, she said, but always sought refuge in a book. Books focused her mind, calmed her, took her outside of herself; television jangled her nerves.

  There’s a W. H. Auden poem called “Musée des Beaux Arts,” written in December 1938, just after Kristallnacht. In it is a description of a painting by Brueghel, in which the old master depicts Icarus falling from the sky while everyone else, involved in other things or simply not wanting to know, “turns away / quite leisurely from the disaster” and goes about daily tasks. I thought about that poem a lot over the next few days of the fair as I chatted about books, kept my appointments, and ate frankfurters off cardboard-thin crackers. The poem begins, “About suffering they were never wrong, / The Old Masters: how well they understood / Its human position; how it takes place / While someone else is eating or opening a window or just walking dully along.” While at the fair, I felt the “someone else” was me. Mom was suffering; I was going on with my life.

  I did manage to talk with my brother and sister, their spouses, and Dad (now out of the hospital and fully recovered), and David. All of us were saying hopeful things to each other: there was cause for alarm but no reason to panic. And yet the calls were exponential—every conversation was relayed to everyone else, leading to ever more calls, calls upon calls, calls about calls. We all spent time on the Web and read the same grim things about this particularly vicious cancer. But there were more tests to be done. It was still early. There was a lot to learn. No one should jump to any conclusions.

  “Are you sure I shouldn’t come home right away, Mom?” I asked each time when I spoke to her from the trip.

  “Don’t be silly,” she said. “Enjoy yourself.” In one conversation, she finally relayed exactly how she got the news—and talked about the first oncologist she’d visited, to whom she and my sister had taken an instant dislike when he’d asked Mom if she worked outside the home. Mom said to me, “Do you think a doctor would ever ask a man that?” She told me that Nina had been amazing—organizing, arranging, asking all the right questions. My sister had spent years working in Soviet Russia and had learned there how to push when necessary.

  “The lesson of all of this …” Mom began, and then paused. I waited. I couldn’t imagine what the lesson was. “The lesson is this,” she continued. “Relief organizations need to tell people who have gone on trips to places like Afghanistan not to assume that any sickness they get while there or after is related to the trip. It may just be a coincidence. We need to make sure people understand that.”

  This was the silver lining? A new protocol for humanitarian aid workers returning from overseas trips to exotic locales?

  “Also, I have a favor to ask,” Mom added. “Bring me back a wonderful book from the book fair. And your father could use a new book too.”

  I grabbed too many books to carry home and then tried to figure out which I would put in my luggage and which I would mail, but all I could think about was whether things could have been different if we’d made Mom see more doctors earlier, or whether, perhaps, she’d had an appointment in Samarra and nothing could have changed that.

  Seventy Verses on Emptiness

  Hi, Mom, I’m home. How are you feeling?”

  “Better.”

  It was Saturday night, and I’d just returned from Frankfurt. The next topic on the phone call was my flight—any delays, books I’d read on the plane. As always, it was only with some effort that I turned the conversation back to Mom. Much of her activity had been centered on her grandchildren. She also wanted to talk about my sister’s reluctance to go through with an impending move to Geneva. Before Mom was diagnosed, Nina had applied for and accepted a job there working for the GAVI Alliance, helping to set global vaccination and immunization policy. Now, days away from moving there with her partner, Sally, and their two children, Nina had second thoughts and was contemplating turning down the job and keeping her family in New York so that they could spend whatever time Mom had left with Mom.

  “Your sister doesn’t want to go. I told her she has to.”

  Mom was getting more and more jaundiced, but it wasn’t slowing her down at all. She’d gone, at the recommendation of a friend, to see the
Dalai Lama at, incongruously, Radio City Music Hall, that glittering monument to entertainment excess. There was a booklet she’d been given there that she wanted to loan me—it contained The Diamond Cutter Sutra and Seventy Verses on Emptiness. I asked her what she thought of the event, and she said that while she’d been very moved to see and hear the Dalai Lama, she’d found, honestly, much of his talk confusing. It had still given her a lot to think about, she said—especially when she read in printed form the verses that were the subject of his speech.

  I also found things to ponder in the booklet, but there was much that I didn’t, and still don’t, understand. These aren’t works that reveal themselves casually—they require study. The Diamond Cutter Sutra, which is largely about impermanence, was composed by the Buddha around 500 B.C. A woodblock copy dated A.D. 868 was found in 1907 in western China and is the oldest printed book in the world. Seventy Verses on Emptiness was written around A.D. 200. Its author, Nagarjuna, was born into the Brahmin upper caste in southern India and converted to Buddhism. Neither I nor Mom—even after the lecture—had the necessary context for interpreting these works, which led Mom to remark that the older she got, the more she learned how little she knew. And yet there was one passage from Seventy Verses on Emptiness, translated into English by Gareth Sparham, that Mom had underlined: “Permanent is not; impermanent is not; a self is not; not a self [is not]; clean is not; not clean is not; happy is not; suffering is not.”

  This passage made a deep impression on me, and I found myself turning to it again and again. Although I wasn’t sure exactly what it meant, it calmed me.

  Mom told me that she and my sister had met, the Friday before I returned from Germany, a new oncologist, Dr. Eileen O’Reilly. A phrase the doctor used had reassured Mom—“treatable but not curable.” Just the word treatable was making a difference. It might mean she had more than the six months that seemed to be the norm. So long as her cancer was treatable, there was reason to hope.

  “Wait till you meet Dr. O’Reilly,” Mom said. “She’s tiny and so young and she couldn’t be smarter. She’s very efficient but also very kind. You’ll love her.” It was important to Mom that we all love her oncologist.

  On the plane back from Frankfurt, I’d started The Savage Detectives, a big, ambitious novel by the Chilean poet and novelist Roberto Bolaño. The novel was written on Spain’s Costa Brava in a frantic burst of creativity as Bolaño turned from poetry to prose to try to make money to support his son. It was originally published in 1998 but had just been launched in America in an English translation in 2007, four years after Bolaño’s death at age fifty from liver disease. I’d brought it back with me from the fair for Mom but wanted to finish it first. Mom had just read Man Gone Down by Michael Thomas, a young writer originally from Boston who was now living and teaching in New York. Man Gone Down is another big, ambitious novel—about race, the American Dream, fatherhood, money, and love. Even though Mom had yet to read the Bolaño and I hadn’t started Man Gone Down, we compared notes and decided that the two were quite similar: vast, bold, obsessive, and brilliant books about disappointment, writing, and running (metaphorically in the Bolaño; literally and metaphorically in the Thomas, as the main character is a jogger).

  When I was finished with the Bolaño, we swapped. Mom was fascinated with The Savage Detectives, even if its digressions occasionally maddened her. I think what she liked most was that it’s a book obsessed with writers by a writer who was clearly in love with writing. Mom also liked that the literary allusions were foreign to her; neither she nor I had read or often even heard of most of the writers Bolaño referenced or lampooned. The experience appealed to her curiosity—the way you can be fascinated by a story that you overhear, on a train or in a coffee shop, about people you don’t know, when the storyteller is highly animated, full of passion and wit.

  Unlike the Bolaño, the Thomas has locations and references that were mostly familiar to us. It had just been published months before, and Mom was excited for me to read it. Told in one great rush of prose, Man Gone Down moves back and forth between the character’s life as a young black kid in Boston, amid the violence that took place around the forced desegregation of schools, and New York, where he’s now married to a white woman, is the father of three children, and has only a few days to keep their lives from falling apart.

  “You’ll race through it,” Mom had said. “It’s the most amazing portrait of the city and the country.” I did, and it is.

  The Bolaño and Thomas are now forever linked in my mind—not just because they are both books about chronic disappointment but because they were the first books Mom and I read together after we learned Mom’s diagnosis, and they provided a different kind of hope than that which Dr. O’Reilly had given us. These two books showed us that we didn’t need to retreat or cocoon. They reminded us that no matter where Mom and I were on our individual journeys, we could still share books, and while reading those books, we wouldn’t be the sick person and the well person; we would simply be a mother and a son entering new worlds together. What’s more, books provided much-needed ballast—something we both craved, amid the chaos and upheaval of Mom’s illness.

  This occurred to me only later. At the time, I remember feeling that I was a little too busy for it all, that reading these books with Mom was so time-consuming that it was keeping me both from being useful to her and from reading other books I’d been wanting to read. But there would be such disappointment in Mom’s voice if I hadn’t yet started a book she knew I’d love that I continued to read whatever she gave me or suggested, and to recommend books to her that I thought she’d like. So it’s fair to say that Mom started the book club unwittingly and I joined it grudgingly.

  IN MY DESIRE to do something, anything, to help, I’d fixed on two thoughts. The first was the idea that Mom should have a blog. She had so many friends, from her many different lives, I suspected it would exhaust her to spend time updating everyone all the time. When I suggested the blog, she and Dad instantly saw the need for it. But Mom didn’t love the idea of writing it. She didn’t consider herself a writer. And more than that, I think she thought it was self-aggrandizing, unseemly.

  “Why don’t you write the blog?” she suggested to me. I said I would.

  My second idea was to have Mom talk to a friend of ours named Rodger, who had been the primary caregiver—my whole family is quick to adopt the language of whatever country we are in, and now that we were in the country of the sick, we were picking up phrases left and right—for a mutual friend who had lived nearly five years with pancreatic cancer. I thought it would give her hope. Rodger was one of the most generous and brave people I knew: an almost-seven-foot-tall extreme athlete and former nuclear sub officer who had been a leader in the fight against AIDS. He had also written a book about caring for the ill.

  As soon as Rodger told me that he and Mom had talked, I called her to find out how it went.

  “So, was it helpful to talk to Rodger?”

  There was a long pause. I wasn’t sure Mom had heard me. Then she began:

  “I didn’t love my conversation with Rodger. It was a bit discouraging. He says I’m going to be so sick from the chemo that I won’t be able to do anything for myself, that I’ll need round-the-clock care, and that I’ll be in terrible pain.”

  There are some genies that, once let out of their bottle, can’t be put back in. It had seemed like such a good idea. I’d been certain that Rodger would know the right things to say, that he would be hopeful. It was the first time since the diagnosis that I heard my mother’s voice crack. She kept telling herself and all of us how lucky she was—to have insurance; to have had such a wonderful long life; to have grandchildren she adored and meaningful work; to have excellent doctors and a loving family; to have a niece who worked in medicine who’d expedited charts and appointments. But as she repeated this mantra now, with that slight crack in her voice, I heard something new: fear. Just how wretched and painful was this going to be?

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nbsp; Why hadn’t I seen this coming? Why hadn’t I talked to Rodger first and vetted what he would say? Why did I always need to do something, like referring one person to another, just for the sake of doing something, when sometimes, perhaps, it was better to do nothing? I was so busy regretting my advice that I couldn’t think of anything to say except to mumble that I was sure (how was I sure?) that things had changed a lot since the mutual friend had died, and that the treatments were gentler and more effective than they were even a few years ago.

  You should talk to this person. You should read this guidebook. You should go to this restaurant. You should order this dish. My life has always been filled with suggesting, recommending. Sometimes my advice works out brilliantly, but sometimes not. And then I look back and wonder whether I really gave proper thought to my recommendations. Was that barbecue restaurant really the best in Austin—or just one where I’d spent a fun evening?

  “Are you sorry you talked to Rodger?” I asked.

  “No,” Mom finally said, with slightly less than her usual assurance. “We’ll just do our best and see.”

  THE NEXT MORNING my father told me that Mom had had a really bad night; she was terribly upset by her conversation with Rodger. Dad was too. Rodger had also told her that her hair would fall out in clumps; that her digestive system would fall apart entirely; that she would be so nauseated and sick, she wouldn’t be able to get out of bed; and that she would need to take painkillers and so many other pills that she’d be like a zombie.

  Dad sounded sad and worried but also irritated. And then I spoke to Mom.

  “Did you get any rest?” she asked me, before I could say anything. “You sounded exhausted yesterday.”

  I told her I’d slept well. Which of course I hadn’t—partly from my habitual insomnia and partially from guilt over setting up the call.

  Two of my nephews were being baptized that day, and we were all getting together for the occasion. Nina and Sally just hadn’t gotten around to it before, but now that Mom was sick and they were supposed to be leaving for Switzerland, they’d arranged it fast. Milo was four and Cy two. “This is going to be a great day,” Mom said. “Now all my grandchildren will have been baptized.”