The End of Your Life Book Club

by Will Schwalbe

  During the film, I looked over several times to see if I could tell how Mom was doing. When it was over, I asked her how she was feeling. I continued to try really hard to form the question just as The Etiquette of Illness had taught me: Do you want me to ask how you’re feeling? And I still think that’s great advice. But after a while it seemed artificial and too formal—like raising your hand for permission to speak when it’s just you and the teacher in the room. It was one thing on the phone, but odd when I was there with her in the house in Florida.

  “Better,” she said. I hoped that was true. After all, we had seen the manatees.

  Olive Kitteridge

  In March 2009, Mom came back to New York just in time for another helping of slush and snow and freezing rain.

  My image of her at this point is of an increasingly frail person determined not to appear so. Daily she would head out—if not to the office she shared at the International Rescue Committee, then to the nearby Asia Society to meet someone for lunch, or to listen to a concert rehearsal or see a ballet. She was managing to keep her weight over one hundred pounds. I can still see her walking on the sidewalk toward her building, wrapped in a quilted down coat, wisps of her white hair showing underneath a silk scarf, the hair so fine, like corn silk; proceeding gingerly so as not to slip on a patch of ice, but unaided; planting each foot firmly and deliberately as other New Yorkers barrel past her. I try not to call out to her—I don’t want to startle her, as I know this walking on ice takes great concentration. Instead I walk up softly beside her and then greet her, a second before gently taking her arm to guide her the rest of the way home.

  Just as parents don’t really notice gradual changes in their children—how is it that the toddler is, suddenly, a foot taller?—so I didn’t immediately notice how much frailer Mom had become. It was only by looking at pictures—even of her at Christmas—that I could see she was, to use her words, fading away. More and more came the not-good days, and each one seemed to leave its mark, with Mom ever so slightly frailer afterward. On the not-good days, her stomach failed her—and she’d have to go to the toilet ten, eleven, twelve times a day. Sometimes her feet swelled up so much she could barely walk. But she continued to go to the rehearsals and the lunches, to see her grandchildren, to museums, and to her office.

  We did not, however, need to navigate these changes by ourselves. Nina had a friend named Dr. Kathleen Foley, a leader in palliative care, who referred Mom to an extraordinary nurse practitioner named Nessa Coyle. Dr. Foley and Nessa work in tandem with Dr. O’Reilly at Memorial Sloan-Kettering and specialize in helping cancer patients and their families with both quality-of-life concerns during treatment and also end-of-life care. Nessa is tall, English, and thin, with somewhat wild gray hair, a soft voice, and a wide smile. The first time I met her, I was reminded of a nanny right out of an English children’s novel. As I would later learn, I wasn’t far off the mark; she’d started her training as a midwife.

  Whenever we saw Nessa, she would greet me warmly but direct almost all her conversation to Mom, often taking Mom’s hands in hers. And I mention both these things because so often over the course of Mom’s dying, I noted how people would avoid touching Mom or talking to her, addressing comments and queries to us, even when she was right there. (“Does your mother want something to drink?”)

  Nessa was always available with sound advice and kept us all from having to bother Dr. O’Reilly with every small question; she helped us figure out what needed to be brought to Dr. O’Reilly’s attention and what we could handle on our own. It took me a while to understand Nessa’s role. But then it struck me: athletes and executives have coaches; Nessa was a coach too, with wisdom that none of us had, even though we’d all lost people we loved. I came to see her not just as a death coach but as a life coach as well.

  It was Nessa who suggested to Mom that she do the things that were important to her while she still felt well enough to do them. If Mom wanted to write a letter to each grandchild, to be opened sometime in the future, she should do that right now. If Mom wanted to go somewhere and see something, she should. But if Mom simply wanted to stay home and have quiet times, reading and listening to music—that was fine too. Nessa encouraged Mom to see her friends for morning or afternoon tea, as opposed to meals, so Mom wouldn’t have to worry about moving food around on the plate to make it look like she was eating if she wasn’t hungry. Mom was pleased when Nessa acknowledged how tough it was not to be self-conscious about such things. Whenever we had a question (Who could install guardrails in the bathroom? How could we find a Reiki practitioner? What should we say to a friend who stopped by a bit too often?), we called Nessa.

  At the end of the month we would celebrate Mom’s seventy-fifth birthday—which created its own set of problems and questions. I don’t think that when Mom was diagnosed, eighteen months earlier, she thought she would live to see it. I don’t think we did either. So Mom was determined to have a party, but she was worried about her stamina. At first, her idea was to invite as many as 150 people to Dad’s club around the corner. But she suspected that that would prove far too ambitious, and Nessa agreed. She and Nessa reasoned that if she had a smaller group, then she could have the party at home and spend as much time as she needed to in the bathroom or in her room. And there would just be fewer people to greet. So we set about making a list—family, of course; just a few co-workers, as she didn’t want to offend people by inviting many and not all; and only people who had been in touch in the last year or so, but no one from outside New York, as she didn’t want anyone to travel. “It’s not This Is Your Life,” she told me, referring to the famous 1950s television show. “It’s more for the people I’ve seen, for whatever reason, in the last year, and to thank some of the friends who have been so wonderful.” She knew she would forget to include people. “They’ll just have to understand,” she said.

  The plan was this: A friend of Mom’s would do simple buffet food. It would last two hours, six to eight. There would be champagne, and Mom would have a few sips, her first since months before she was diagnosed.

  And there would be two absolute and inviolable rules that I was to put on every invitation: no presents and no toasts. Mom looked over my shoulder at the electronic invitation (my idea) on my computer screen as I composed it and shook her head. I hadn’t done it quite right. She typed in what she wanted: NO PRESENTS AND NO TOASTS. All caps. Better.

  But the party wouldn’t be until her actual birthday, March 31, the end of the month. And there was a lot to do in the meantime, including several doctor appointments, which would give us much time to read and talk. She also needed to find a present for grandson Adrian. After some searching, she found a handsome early edition of The Hobbit for his ninth birthday. “No more plastic toys,” she said. “Just books.”

  We settled on two books that we would read next and swap. One, a book called In Other Rooms, Other Wonders by Daniyal Mueenuddin, had just been published. The other was a Pulitzer Prize–winner, Olive Kitteridge by Elizabeth Strout, which had come out the year before. Both are books of collected but related stories. She would start with the Strout; I with the Mueenuddin.

  The chemo continued with a new combination of drugs and no longer with the Baxter infusion, the bottle strapped to her chest, but the old-fashioned way, the drip—although connected to the port rather than a vein. The routine is otherwise the same familiar one.

  We first sit in the waiting room chairs, maybe reading, maybe still talking about this and that, and periodically one of the nurses announces a name. After a while, it’s Mom’s. “Mary? Mary Schwalbe?” We then pick up our coats, our books, and our half-drunk mochas and follow her through the swinging doors into the room with the treatment cubicles.

  Mom sits in the recliner; I sit alongside; coats get shoved under my chair. They rarely keep you waiting long once you are in your cubicle—someone usually comes in right away. Today I hope it’s Curt, Mom’s favorite nurse. Curt is a few inches taller than me, and hand
some—not movie-star handsome, but the kind of person you would cast in a film to play a very attractive minor member of an army platoon, or a male nurse in a hospital drama, for that matter. Mom beams when it’s Curt and asks him about his apartment, whether he’s taking any vacation, how he’s feeling.

  There’s a slight clenched-jaw quality to Curt’s face, and while he’s never distracted, you feel that he is aware that he has a limited amount of time for each encounter. He will chat while he’s doing what he’s doing, but not for too much longer. A friend’s father introduces himself to the waiter at the start of every New York restaurant meal by saying: “Hi, I’m Eric, and this is Susie, and we’re from Vermont.” My friend cringes ever so slightly whenever his dad does this. I cringe a little when Mom is talking to Curt, thinking that he doesn’t want to chat; he’s trying to concentrate; she’s just another old person dying of cancer. But this isn’t true—it’s just the childish embarrassment we all develop about our parents: they are too effusive, try too hard; they just aren’t being cool.

  Mom likes a blanket (she’s always cold) and a pillow under her arm. Some apple juice—warm, not cold. She doesn’t ask for them but accepts them gratefully when they are offered, almost surprised. If these items don’t materialize, she still doesn’t ask but sometimes offers a tentative question: “Usually when I come here, they give me a glass of apple juice. Am I supposed to be drinking something?” But often she doesn’t.

  “Mom, do you want to ask about the apple juice?”

  “No,” she says, a little annoyed at me. “I don’t have to have it every time.”

  “I’ll ask.”

  “Okay.”

  There’s always their list of questions—How is Mom feeling? Is she tired? How are her bowel movements? Then another nurse is brought in for the chemo check, Mom confirms her name and date of birth, and the nurses confirm with each other that she’s the right person getting the right dose of the right stuff. With that, the bag is attached to its hook and slung upside down like Mussolini on that meat hook. The saline is set to flow, and with one eye we will watch it drip.

  “Anything else I can get you?” asks Curt.

  “No, and thank you for everything, Curt. You’ve been just wonderful,” says Mom, as though Curt were her host for a country weekend and she was just settling in for a nap in a duvet-covered bed after a long journey.

  It’s quiet. People doze or talk in hushed voices. Machines beep. The nurses walk briskly in and out on sneakered feet. Depending on the treatment, we now have anywhere from one to four or five hours. This Tuesday in March, treatment stretches to more like six or seven hours. It’s a busy day, and there are delays all around. It’s the last treatment before Mom’s next scan and next doctor appointment. She’s convinced the new treatment isn’t working. Not in a pessimistic or fatalistic way. She’s just matter-of-fact. She feels she’s getting sicker, and she’s looking sicker too.

  “I’m loving Olive Kitteridge, the Elizabeth Strout. Maybe partly because Olive is a schoolteacher, but not like most teachers in books; she’s got strong opinions and very sharp edges—like so many of the best teachers I worked with. She’s a real New Englander, too. And I love that she has many more fears than she’s willing to admit—for herself and her family. There’s an extraordinary passage about loneliness. Just like we talked about with Kokoro and The Price of Salt. Here—read this.” She points her finger at a page in the book.

  In the passage Mom is showing me, Olives notes that “loneliness can kill people—in different ways can actually make you die. Olive’s private view is that life depends on what she thinks of as ‘big bursts’ and ‘little bursts.’ Big bursts are things like marriage or children, intimacies that keep you afloat, but these big bursts hold dangerous, unseen currents. Which is why you need the little bursts as well: a friendly clerk at Bradlee’s, let’s say, or the waitress at Dunkin’ Donuts who knows how you like your coffee. Tricky business, really.”

  And as I finish reading, in comes Curt.

  “Almost done. Would you like some apple juice?” Curt asks.

  “Oh, thank you, Curt. I’d love that.”

  I wish I’d told Curt then and there how grateful I was to him for looking after my mother so well, for the little bursts, which make all the difference in the world to someone dying of cancer, and to the people who love her. I hope he could see that.

  AFTER OUR LONG day at Memorial Sloan-Kettering, I had to put in long hours at work, and the next few days were busy ones, with business dinners every night. Then it was time for me to go to a tech conference in Austin. I couldn’t wait for the plane ride—five hours each way alone with a book. Mom had finished Olive Kitteridge and given me her copy. I devoured it on the way there and the Mueenuddin on the way back.

  AT THE NEXT doctor’s visit, on Tuesday, March 24, 2009, Mom was told something she had suspected—the scan revealed that the present treatment wasn’t working at all. The tumors had not only continued to grow, but they were growing even more rapidly. And the present treatment was the very last standard treatment. So now it was time to talk about experimental treatments.

  The experimental treatments being considered were in various stages. Which one Dr. O’Reilly would recommend depended on a lot of different factors: whether there were spaces available; the type of cancer Mom had; whether she was willing to be poked and prodded and tested the way one needed to be for some of the trials; whether she was willing to put up with the side effects already experienced by other people trying them. We would discuss it all in two weeks, when Mom returned for another checkup.

  Dr. O’Reilly was her usual kind self. She was a little more soft-spoken this time, her Irish accent a bit more pronounced. She spent some extra time with us.

  “The experimental treatments we’re looking at have shown some promise in slowing the growth of tumors,” she said. Afterward Mom said, “She’s not giving up yet.” And Mom also said, “Do you realize that this means for the first time in eighteen months I’ll have had a whole month without a treatment?” So for Mom, that was the silver lining. A month without treatments—a month without side effects—feeling good for her birthday party. As for her tumors growing—well, we’d face that two weeks from now.

  We had to wait around for some paperwork after the visit with Dr. O’Reilly, so I had the chance to spend a little more time talking with Mom.

  “Are you discouraged?” I asked her.

  “No,” she said. “I expected it. And it’s not over yet. I’m going to plan some wonderful things for the summer and for the fall, and I’ll do what I can.”

  We sat in silence for a while.

  “Do you have the Mueenuddin stories?” she said.

  “You’re going to love them,” I said. “They’re quite dark—but totally absorbing.”

  “Where are they set?” Mom asked.

  “Lots of places. In Pakistan, in the countryside and in Lahore and Islamabad. But also Paris—there’s a wonderful story that takes place in Paris.”

  Oddly, and maybe partly because I read both books on planes to and from Austin, In Other Rooms, Other Wonders reminded me of Olive Kitteridge, not just because both were books of connected stories, but because they share a tone: poignant, but also a bit acerbic. Many of the characters in the Mueenuddin are blunt and opinionated, just like Olive.

  “Of all the places I’ve been, the place I most want to go back to is Pakistan,” Mom said. “But I don’t think that’s in the cards. Nancy and my other friends there say it’s even more dangerous now than Afghanistan. But obviously I’m not worried about getting killed.” Mom smiled. “No, I just think that I’ve probably made my last trip. Though we’ll see—maybe I’ll get one more trip to London or Geneva.” She looked sad, a bit defeated. She bit her lower lip, the way she did when lost in thought or in pain. She closed her eyes briefly. I sat quietly next to her.

  MOM WAS TERRIBLY sick in the days leading up to her party. She would give me the report on the number of Imodiums she’d n
eeded to take and how many times she’d been to the bathroom. I asked her if Nessa had any advice for her; she said she’d checked and picked up some tips on what to eat to settle her stomach. Mom didn’t feel like reading much that week, but she did love In Other Rooms, Other Wonders, the Mueenuddin book, as I’d predicted. There’s a story near the end called “Lily” about a couple named Lily and Murad—it’s a tale of a marriage that’s gone seriously off the rails. We talked about that story the most—about how much the collapse of the relationship was Lily and Murad’s fault as individuals, but also about how, even though they came from the same social class, they were trapped between different worlds—Lily’s fast life in Islamabad and the isolation of Murad’s farm, which Lily thought she wanted.

  “I think this is one of the saddest things we’ve read all year,” I told her.

  “I agree,” Mom said. “Everything is too much against them—they really don’t have a chance. What makes it so sad is how much hope they have at the start—all the plans they make.”

  Our conversations then turned from the stories and Pakistan to neighboring Afghanistan and the progress on the library, for which detailed architectural drawings were well under way. Very much in our minds was what had happened to David Rohde. He was still held hostage in Afghanistan, and we’d still had no word about his health, or condition, or even if he was still alive. Mom told me she continued to pray for him every night without fail and also checked her email constantly for any news.

  The day before the party a colossal array of flowers arrived—from Mom’s last class of students at Nightingale, the high school where she taught and was an administrator before she became director of the Women’s Commission. Girls from the class of 1990 had found each other through Facebook for the sole purpose of joining together to send Mom a stunning bouquet with a note of thanks for all she’d done for them.