The End of Your Life Book Club

by Will Schwalbe

  The first children Mom and Nina met at the Rehab Center, where they would be working, were four deaf-mute girls, who did all the cooking and who instantly adopted my mother and sister. The girls were delighted to have more help and had naturally sunny personalities. Many of the children at the Rehab Center could not crawl; some could barely move at all. Many had severe developmental problems. On the first morning, Mom spent time with a young woman named Mang Quan, who was twenty but looked twelve and had dozens of medical challenges, including incontinence. Mang Quan seemed to take to Mom immediately. She was able to feed herself with her one functioning hand; the other she wouldn’t remove from around Mom’s neck. She couldn’t walk, was heavy, and had to be carried everywhere. She and Mom formed a close bond. Or so Mom thought.

  But Mang Quan didn’t come the next day, or the day after that. So Mom went to visit her tent when another day had almost passed. Mom soon discovered why Mang Quan hadn’t returned to the center. Mang Quan’s parents did love her—but they were old and couldn’t tend to her. So they housed her outside their very basic tent in a bleak shed, where she lay naked on a slab of wood with a dish of rice beside her. Her parents had been ill and unable to bring her to the center. She was now filthy and ashamed. She didn’t want Mom to see her like that. She threw rocks at Mom to keep her away.

  That was day four.

  Mom and Nina persevered and grew quite proud of their ability to weather the atrocious conditions. The latrines were a horror show, but one that soon made them laugh.

  One hundred children aged three to eighteen showed up at the center every day. Mom and Nina would feed them breakfast, help them brush their teeth, bathe the ones who had soiled themselves, and try to engage and entertain them. As time went by, Mom and Nina started to make progress. Resources were extremely scarce. They taught them games—at first with pebbles. Then Nina found macaroni at the local Thai grocery store and showed the youngest ones how to string necklaces. Mom did more of the bathing; Nina, more of the games.

  Eventually Mang Quan came back. Mom later wrote in her journal:

  Two weeks later: Total disorganization in our unit today. One of my little girls—a Down syndrome child whom I called The Dancing Girl, Chong Thao, had fallen and bitten through her tongue. While I was cleaning up the blood, Mang Quan, who was jealous when I was with other children, made a total mess of herself on the concrete floor. Nina and I were so desperate that we decided to teach the children a song. The easiest one we could think of was “If You’re Happy and You Know It, Clap Your Hands”—and the children who could clap, did, and we arranged for some of them to have their arms around children who could not clap. And we sang this every day till we left.

  Every afternoon Mom and Nina would teach English to a group of nine young men who had sought them out. These were older teens who had nothing to do all day and were desperate to learn something. They had no books, but Mom and Nina found a stack of ancient Reader’s Digests in town. It was among this group that my mother and sister made a great friend named Ly Kham.

  The very first day Ly Kham met them, he’d given them a composition he’d written that began as follows: “There is nobody in the world like to be a refugee. They have to move from one place to another place. The refugee is hated by all people in the world.” But Kham had been born with optimism that never stayed buried for too long.

  At night, Mom and Nina would go back to the room they shared in a Thai village an hour from the camp. Nina tended to go out at night for beers with local friends and other aid workers, while Mom more often stayed in to read books by flashlight.

  When the three months were up, Nina knew what she wanted to do with her life and stayed on in the camp. Mom had a new direction too. She would work one more year at her school before quitting that job to take a new one as the first director of the Women’s Commission for Refugee Women and Children, running the organization in its early years and devoting herself to the cause of refugees. As for Kham, who as a five-year-old had walked days from his home in Laos to Thailand, and had seen many members of his family killed, Mom would help bring him to the United States, where he would get a scholarship to college and go on to have a career and family. Well, two families—his own and ours. He was one of the former refugees who’d recently visited Mom and whose pictures she’d proudly shown us.

  I’VE ALWAYS LOVED telling this story and will do so at the slightest provocation. Many people have told me that it inspired them to find an unusual way to connect with an adult child, or with a parent. It changed Mom and Nina, but it also changed the rest of us. It was a challenge of sorts—and I think we’re all a bit more fearless and, I like to think, we try to be a bit more selfless thanks to their example.

  Mom was often asked to give speeches about why she felt so committed to the cause of refugees. She would say, “Just imagine that you are awakened tonight by someone in your family who says to you, ‘Put the things you treasure most in one small bag that you can carry. And be ready in a few minutes. We have to leave our home and we will have to make it to the nearest border.’ What mountains would you need to cross? How would you feel? How would you manage? Especially if across the border was a land where they didn’t speak your language, where they didn’t want you, where there was no work, and where you were confined to camps for months or years.”

  And she would also explain it with a poem called “I Am Sorrow,” written in 1989 by a sixteen-year-old Vietnamese girl named Sindy Cheung, who was living behind barbed wire in a refugee camp in Hong Kong. At one meeting of our book club—I can’t remember exactly when, but it was while Mom was getting chemo, and in winter—I asked her to name some of the writers who had changed the course of her life. “There are so many,” Mom said right away. “I wouldn’t know where to start. Really, whenever you read something wonderful, it changes your life, even if you aren’t aware of it.” She paused for a few seconds and then added: “But I’d certainly put Sindy Cheung near the top of the list.”

  I AM SORROW

  Who will listen to my feeling?

  Who will listen to my useless land?

  After the war, my skin had been damaged,

  There are craters in my body.

  Although I was sad, sorry, and suffering,

  Who will listen to my feeling?

  I am sad, sorry, and suffering,

  Who will know my feeling?

  I am not sad about my harmed body,

  I am sorrow because of the people who can’t use me rightly.

  Who will know my feeling?

  The Uncommon Reader

  At the start of January 2008, Mom was looking forward to traveling to London, her first trip out of the country since she’d learned of her diagnosis. She had a wretched week before going but toughed it out and felt strong enough to fly. Because Mom hadn’t been well, Dr. O’Reilly had to reschedule a chemo treatment from the Friday a whole week before her trip to the Tuesday right before her departure. This made Mom anxious about whether she would feel well the week she was there. But ultimately I’m not sure anything could have kept her from going.

  Mom had fallen in love with London as a drama student in 1955. I think it was the first place she really felt like an adult. Mary Anne had been twenty-one, and seven years away from being my mother. She wrote to a friend, who shared the letter with me: “I really am completely happy over here, and don’t ever want to relinquish my freedom again. It’s quite wonderful to be completely on one’s own, especially for my kind of sheltered, spoilt brat variety. But I do wish some of my friends were here too. When one sees something especially wonderful, it’s always nice to have someone to share it with.”

  In another letter, “London is a magic kind of city, at least I think it is. One doesn’t mind the cold or the terrible weather, and people always smile at you in the streets, and when you ask someone directions, they not only tell you where to go, but if they possibly can, they take you there, and no one is in a hurry, and everyone is fantastically polite, and there are
so many marvelous places to go, and concerts that you would adore, and so many art exhibits every week, and I’ve been going to church regularly on Sundays, because the services are so beautiful, and the choirs are so well trained, and there is a real peace and quiet about it.”

  There’s something extraordinary about the first city you love, and many things brought Mom back to London again and again. That Dad loved it too certainly helped. We spent a year there when I was nine and my parents were on sabbatical, and the family vacationed somewhere in the British Isles almost every summer, always with time in London.

  In addition to the pleasures of the place, it was partly nostalgia that drew Mom back there. There was, it seemed, a fair bit of romance involved on her initial visit—and her feeling that everyone was friendly there may have been owed to good spirits on the part of Londoners but also thanks to Mary Anne being a pretty twenty-one-year-old woman.

  This trip, more than fifty years after her first, had a rocky start. The minute she got to London, she spiked a ferocious fever. Dad took her right to a hospital, but as soon as she got there, the fever vanished. Mom was glad but also frustrated when a fever disappeared before the doctors could take her temperature. Even though this isn’t unusual for people undergoing chemo, Mom was afraid that people would think she was a hypochondriac. We discussed it once, and I tried to tell her that having a terminal illness pretty much excuses you from accusations of hypochondria. But she’d placed so much stock for so long on not complaining that it still irked her when there was any chance that someone might think the few things she did complain about weren’t real but were in her head.

  The rest of the London trip went better. Nina and Sally and the boys flew over from Geneva. Mom was also able to attend a friend’s seventieth-birthday party and see there dozens of people she loved. She sent me back two enthusiastic posts for the blog—happily noting that she was meeting with a colleague from the International Rescue Committee in London. She’d founded the IRC-UK a decade earlier, and it now contributed more than thirty million pounds a year to the IRC’s overall budget, as well as having programs of its own.

  WHEN MOM RETURNED to New York, it was time to pick a new book for the club. We decided it should be set in the British Isles. We settled on Felicia’s Journey by the Irish short-story writer and novelist William Trevor. In this disturbing novel from 1994, a young woman, pregnant and broke, flees her small town in search of the handsome man who got her pregnant. She finds herself wandering through the English Midlands, desperately searching for the lawn mower plant in which he said he worked, and unwisely trusting the kindness of a stranger, an overweight, unctuous, lonely fifty-year-old whose mind keeps spinning back to a series of women he befriended and who now live only in his Memory Lane.

  We both read it in one sitting.

  “When you go to towns, you see people all the time,” Mom said, as we met back at the hospital, just a few days after her return from London. “And you don’t give them a second thought: maybe a homeless woman, or people going door-to-door trying to convert people to their religion, or a man having tea with a younger woman. What I find so remarkable about this book is that Trevor not only introduces you to these people, he explains exactly how they came to be where they are.”

  Mom showed me a page she’d dog-eared: “Hidden away, the people of the streets drift into sleep induced by alcohol or agitated by despair, into dreams that carry them back to the lives that once were theirs.”

  “I found the book terrifying,” I said. Then, forgetting briefly Mom’s odd reading habits, I asked: “And I was very surprised by the ending. Were you?”

  “Of course not—I’d read it first. I don’t think I could have stood the suspense if I hadn’t known what was going to happen. I’d have been way too worried.”

  For obvious reasons, Mom wasn’t a big mystery reader—but the series she liked were the ones that were set in one place. She loved Donna Leon’s Venice and Dennis Lehane’s Boston and Colin Cotterill’s Vientiane and Alexander McCall Smith’s Botswana and his Edinburgh. (I wish he’d written his London series a few years earlier.) In each case, the location becomes an active participant in both the crime and its solution and therefore demands that the writer have a deep knowledge of its surprises and idiosyncracies. My mother delighted in the ways great mystery writers could turn a city or town into a character and reveal its hidden corners—where you might hide, where you go with money, where you slink to when you have none, where a certain person would blend in and where he would stick out like a bloody thumb.

  Keeping with our British theme, we next chose The Uncommon Reader, a novella by Alan Bennett that had been published six months earlier. It was fate that Mom would fall in love with it. How could she not? It was written by one of her favorite writers. (Bennett was born two months after Mom—and she’d avidly followed his career as a playwright, novelist, screenwriter, and memoirist since seeing him do comedy on the London stage in the early 1960s.) It was set in London. It even involved the Queen of England. But what really captured Mom was the cast of supporting characters: especially the young page, a “ginger-haired boy in overalls,” who gets the queen to start reading, and Sir Claude, who sets into motion the queen’s new life, the revelation of which makes for a very unexpected (if you haven’t skipped ahead) and charming ending to the book.

  Also, how could anyone who loves books not love a book that is itself so in love with books? The day after we both finished the novella, I saw Mom at her home and she pointed out to me her three favorite passages. Whenever we were together and she came to a passage in a book that she liked, she wouldn’t read it to me—she would hand the whole book to me, with her finger pointing to a line and instructions where I was to start and where to stop. There was a certain amount of shuffling involved. As always, she lifted her finger only when she was sure my eyes had found their way to the right portion. It was like the passing of a baton in a relay race:

  “Of course,” said the Queen, “but briefing is not reading. In fact it is the antithesis of reading. Briefing is terse, factual and to the point. Reading is untidy, discursive and perpetually inviting.”

  *

  “Pass the time?” said the Queen. “Books are not about passing the time. They’re about other lives. Other worlds. Far from wanting time to pass, Sir Kevin, one just wishes one had more of it. If one wanted to pass the time one could go to New Zealand.”

  *

  The appeal of reading, she thought, lay in its indifference: there was something undeferring about literature. Books did not care who was reading them or whether one read them or not. All readers were equal, herself included.

  In the Bennett, a very high-profile character winds up quitting a very high-profile job. I’d wanted to start a website for months and had, in the first days of January, just before Mom went to London, finally gotten up the courage to quit my day job, even though I wasn’t sure what kind of website I wanted to start. Up until the last minute, I debated whether to say to my boss that I was thinking of leaving, or to say that I was indeed leaving. I found myself saying the latter.

  “That’s the best news,” Mom had said, when I told her.

  “Yes,” I said. “I’m scared but excited. And the ironic thing about quitting book publishing is that now I’ll have more time to read.”

  “And maybe even write?” suggested Mom.

  “I don’t think so,” I said.

  DAYS AFTER CHATTING with Mom about the Alan Bennett, I saw her again at my niece’s fourth birthday. By the time David and I arrived, it was full-fledged happy chaos. There was a Cubist pin-the-tail-on-the-donkey—which was particularly thoughtful because the children couldn’t help but get it right/wrong and screamed with laughter wherever the tail landed. There was plenty of alcohol for the adults. There were crafts and the usual complement of New York parents hanging around, sipping wine or Dunkin’ Donuts coffee and either encouraging their children to join in or allowing them to stand, thumb-in-mouth, draped around their m
other’s legs.

  In the midst of it stood Mom. Her hair was definitely thinner. And even though the studio was hot, she was wearing two layers of sweaters. Lucy, the birthday girl, was a little feverish—but was trying her darnedest to have a great time at the party. And her grandmother was doing the very same thing. Everyone had warned Mom that as someone undergoing chemo, she shouldn’t be around people with colds and shouldn’t kiss or hug people hello or ride the subway or bus. But Mom wasn’t going to live like that. So there she was in a scrum of children—about half of whom had runny noses and hacking coughs—completely in her element.

  After a while, though, I could see that she was getting tired. She’d told me on the phone about the sores on her feet and how standing and walking weren’t great. She broke away from the pack and came to join Dad and David and me.

  We talked plans, as ever. She was preparing for her trip to Vero Beach and could hardly wait. I was to join her at chemo and her doctor’s appointment that coming Friday. We also talked more about London.

  She and Dad had walked as much as she could to visit places she loved, she said. She’d even gone back to see the house where she’d lived in the fifties, 20 Courtfield Gardens. She’d seen her oldest godchild and his family, and his father and mother, friends from that first year she lived there. Her godson’s mother was in an advanced stage of Alzheimer’s, and Mom said she was amazed at the love and attention her family was giving her—as difficult as it must be.

  “I feel so lucky,” Mom said to me. “I can’t imagine what it would be like not to be able to know the people I love, or to read, or to remember books I’ve already read, or to visit my favorite places and remember everything that happened there, all the wonderful times.”