The End of Your Life Book Club

by Will Schwalbe

  So I quickly brought the conversation back to books—to David Halberstam’s The Coldest Winter and the veterans he’d interviewed for it. “You know, Mom, almost none of them had ever talked to their families about the Korean War. I’ve heard from a lot of them, as well as from their children and grandchildren, who say their fathers and grandfathers are now talking about that war for the first time. I’ve also heard from people who were sent The Coldest Winter by a father or grandfather, men who still can’t talk about the war.”

  “That’s one of the things books do. They help us talk. But they also give us something we all can talk about when we don’t want to talk about ourselves.”

  Mom went on to tell me, as we sat there, that she really believed your personal life was personal. Secrets, she felt, rarely explained or excused anything in real life, or were even all that interesting. People shared too much, she said, not too little. She thought you should be able to keep your private life private for any reason or for no reason. She even felt that way about politicians—so long as they weren’t hypocrites—and worried that we’d never find enough good and interesting people to run for office if we pried into every corner of their past.

  Mom also believed that there is such a thing as a good secret. Maybe something kind you did for someone but didn’t want that person to know, because you didn’t want him to be embarrassed or feel as though he owed you anything. I thought back to a Harvard student of Mom’s, an aspiring playwright who won an award to travel in Europe—but the award didn’t exist. Mom had simply paid, anonymously, for him to have enough money to go on what turned out to be a life-changing trip. I write about this only because I was told that years later this fellow figured it all out, when he went to research who else had won this lucrative traveling fellowship and discovered that the answer was no one.

  As we were talking, a social worker came in with a questionnaire. Did Mary (I thought it was odd that they always called her Mary even though her name was Mary Anne, and odder that Mom refused to correct them) have time for some questions? They were doing a study and wanted to see if she might be a fit.

  “Sure,” said Mom. There was at least an hour of chemo to go.

  “Awesome.” The person asking was a woman in her twenties. She was smartly dressed in a skirt and a V-neck sweater, with thick tights and Doc Martens–style shoes. Her face was clear-skinned and earnest, a bit pinched but friendly. She ran her hands frequently through her shoulder-length blond hair.

  “Now,” the young woman began, more or less reading from a script. “This is a survey we are doing about the spiritual health and support systems of people undergoing treatment for cancer that has spread to other organs or throughout the body, Stage Four cancers …”

  I allowed my mind to drift as the young woman explained that the participants would be divided into two groups. One group would get counseling, and one group would get none. They would assess everyone at the beginning and at the end, and they wanted to talk to several members of the family. Mom would need to bring the form home, read it, sign it, have my father sign it, and also have it signed by the other family members who were willing to participate. The woman then asked a series of questions: my mother’s religion (Christian), how often she prayed (daily), whether she would describe herself as happy (yes—though she wasn’t thrilled about the cancer). The woman laughed brightly but a bit nervously.

  “Well,” said Mom when she left, “that was something of a surprise. And I think your father is going to be surprised too.”

  “About the survey?”

  “No. That I have Stage Four cancer. I had no idea.”

  The Hobbit

  Mom, what are you talking about? I think Stage Four just means your cancer has spread to other parts of your body, which is why they can’t operate. You know that it’s spread, right?”

  “Of course, I know that.” She sounded a bit annoyed, or maybe she was just tired. “I just didn’t know it was Stage Four.”

  The Etiquette of Illness. I tried to think of what I should or shouldn’t say. The prognosis for people with Stage Four pancreatic cancer was, as my siblings and I had read on the Internet, usually three to six months. That didn’t leave much room for hope. But there was no clear prognosis for people with “cancer that has spread.”

  Stage Four is the end of the line. There is no Stage Five—though there are stages IVa and IVb, which reminded me of my tenure on the “E minus” basketball squad, thusly named because they didn’t want to call the grouping of the sixth least talented (or, more charitably, least motivated) players the “F” Troop.

  I decided to say nothing more.

  Soon it was time to leave chemo. It was then that I witnessed the peculiar dance that takes place at the elevator bank. When an elevator arrives, age may still go before beauty, but illness goes before health, chairs before canes, canes before the caneless, the wobbly before the surefooted. After you, my dear Alphonse. No, after you. No wonder it took so long to get an elevator.

  On the way out we usually made a visit, never brief, to the pharmacy on the second floor. I told Mom a joke I’d heard ages before about an Englishman at the time of the Crusades who leaves a prescription off at a pharmacy in London and then goes to fight against the infidels. He’s captured, is eventually released, falls in love, and lives for thirty years in Persia. Eventually he decides to come home to England and, once back, finds in his pocket the receipt for the prescription. Miraculously, the London pharmacy still exists, and the same pharmacist is behind the counter. He hands over the receipt; the pharmacist looks at it and says, “It’s not quite ready yet—can you come back at five?”

  Actually, the joke involves shoes and a cobbler. Mom smiled indulgently. She’s never thought my jokes very funny, but she’s endured them politely, except during those childhood years when I fell in love with punning. That tried even her patience.

  Theoretically, the doctor has called the prescription down at the start of chemo so that it will be ready and waiting at the end. But it usually isn’t ready, or it’s ready but there’s a problem. The problem almost always involves Medicare. Either Mom has exceeded a limit; or she can get only so many of these pills if she is also getting those; or the drug is strictly controlled and needs an extra signature. There are pills upon pills: to stimulate the pancreas, for nausea, for exhaustion, for sleep. Sometimes Mom doesn’t have to pay anything at all for pills that cost thousands of dollars. Sometimes it’s hundreds or thousands of dollars that she needs to pay. It’s impossible to keep track of it all and always a surprise.

  Mom’s reaction to this chaos isn’t a surprise. No matter how high the bill that she is paying or that Medicare is paying for her, she will say to me or herself: “What happens to all the people who can’t afford this? It’s just not fair.”

  Universal health care was always an issue Mom cared about, and the more care she got, the angrier she became that good medicine wasn’t available for everyone in the United States. The pharmacy almost always provoked a political discussion or diatribe.

  On this particular day, there was a woman in line right in front of us. She was in her thirties, smartly but not expensively dressed, wearing dark glasses. When she took them off, you could see she’d been weeping. She was shaking her head. Mom talked to her in a soft voice. Not unusual—Mom talked to everyone and had no hesitation approaching people who were crying, in pain, or in distress. (“If they don’t want to talk, they’ll tell you so, but how can you ignore them?”) The medicine wasn’t for this woman, it turned out; it was for her mother. The mother had Medicare yet was in that odd place called the doughnut hole, which meant that the government had paid thousands for medication but now she would need to pay thousands before the government would pay thousands again. (Imagine trying to eat a straight line across a doughnut—you would eat cake, go hungry, and then eat again.) My mother was, at that moment, still in the cake of the doughnut; this woman’s mother was in the hole.

  My cell phone rang, and I stepped o
ut into the hallway to take the call. When I got back, Mom was in a chair, waiting for her prescription. There was no sign of the woman who couldn’t quite pay for what her mother needed.

  “Mom … you paid for that woman’s medicine, didn’t you?”

  “It wasn’t much,” she said, a little cross at being caught. “But don’t tell your father.”

  Then, as always, she refused to take a cab. (“The M20 takes me almost to my door; it’s crazy to spend money on a taxi.”) So I waited with her for the bus that would take her home.

  MOM HAD ONE more chemo session before Thanksgiving, a holiday I love because of the pies, because it’s pretty secular, and because you don’t have the stress and expense of shopping for gifts. Also, if you grow up in Cambridge, Massachusetts, Thanksgiving is huge—it’s all the holidays rolled into one. That’s partly because the Pilgrims landed and lived nearby. But everything is huge (winters, sports teams, lobsters) when you grow up in or around Boston—a city that calls itself “the hub,” as in “the hub of the universe.” As a kid, I thought that was a fact and was shocked to discover that people in Paris, Berlin, Tokyo, and New York didn’t agree.

  I was born, not in Massachusetts, but in New York City in 1962. My dad was working for Fairchild Publications, which put out trade papers ranging from Women’s Wear Daily to Drug News Weekly. He’d been one of the first Jewish kids (albeit not a remotely religious one) at his preppy boarding school. He’d then enlisted in the navy, catching the end of World War II on a boat out of Norfolk, Virginia. After that, he’d gone to Yale and to Harvard Business School and eventually found himself in advertising. While Mom had come from prosperous Jews who had moved to the United States in the seventeenth century and later married other Jews who had either converted to Christianity or who were so assimilated that they celebrated Christian holidays, Dad came from earthier and more recent stock. His father’s grandfather came over during the Civil War as a German Jewish mercenary drummer boy and wound up selling vegetables, mostly potatoes, on New York’s Lower East Side, living in the Five Points section made infamous by Martin Scorsese’s film The Gangs of New York. My dad’s father did well in the family potato business—expanding the wholesaling dramatically and buying a seat on the Chicago Mercantile Exchange. His wife, Latvian by birth, had great aspirations for my father and his two sisters—all of whom were sent to the best schools and colleges.

  Dad had proposed to Mom on their first date—and she’d said yes. They’d met days earlier when Dad had come to visit with a friend. After a few months’ engagement, they were married in 1959. Dad was thirty-two and Mom twenty-five.

  Dad tells me he looks back on their “courtship” with disbelief. He’d immediately fallen in love with Mom—but it’s as though he still can’t quite believe she chose him. The wedding was held in Connecticut and was Christian, which was just one of the details of which Dad’s mother, a more observant Jew than her husband or children, disapproved, somewhat vocally, until one of Mom’s best friends suggested that she keep her opinions to herself, which she then did.

  Seven years after the wedding, Mom and Dad decided to move the whole family from New York to Cambridge, Massachusetts, so Dad could take the job working with Bob Chapman, managing Harvard’s theater. It was 1966. I was four; my older brother was five (and a half). My sister was about to be born. We rented a house down the street from Julia Child, who had published Mastering the Art of French Cooking only three years before we became her neighbors and who had just started appearing on local television. I like to tell people she baked hot cross buns for all the children trick-or-treating at Halloween. This may or may not be true.

  My earliest memories involve Mom reading to us—we had a story every night before bed, and then she would tuck us in. Even though my brother and I were just eighteen months apart, Mom never read us the same book. Each of us got to choose our own book every night. My favorite was The Story of Ferdinand by Munro Leaf, a classic from the 1930s about a peace-loving bull. (Hitler hated the book and ordered it burned.) My second favorite was Crockett Johnson’s Harold and the Purple Crayon, a book from the 1950s about how a very artistic child uses his imagination and one crayon to create beauty and adventure—and get himself out of jams. My brother was obsessed with Maurice Sendak’s newly published Where the Wild Things Are; in its rumpus-loving antihero Max he found a role model. When my sister was old enough to have a favorite, hers was Sendak’s In the Night Kitchen, with its naked protagonist and slightly slapstick (yet somewhat sinister) bakers. Mom’s own best-loved book from her childhood was Pink Donkey Brown by Lydia Stone, a 1925 story about two unspeakably polite children who had charge of a pony—a book so saccharine that even when we were tiny, we couldn’t bear it. (“Weren’t Betty and Billy glad that they had been good children? Waiting didn’t seem so very hard now that it was over and they were going to have their ride.”)

  As we sat in chemo, I asked Mom if she remembered the one night she forgot to read to me. I was seven or eight years old. I remember lying in bed, hearing my parents’ voices at a party downstairs. My brother had dropped off to sleep, oblivious that night as to whether we’d been read to or not. I had brushed my teeth and jumped into bed and was waiting for her to read us each a story and tuck us in. She didn’t come. I heard glasses clinking and noisy conversation. And I started to get upset.

  The more laughter I heard from downstairs and the more time went by, the more hysterical I got. I remember feeling alone, ignored, and abandoned. It never occurred to me to put on my robe and slippers and go downstairs to remind her. She couldn’t have forgotten—she’d never forgotten before. It must have been that she no longer loved me. Hearing what a good time everyone was having without me made it that much worse.

  Eventually I was wailing so loudly that one of the guests heard me—and Mom bounded upstairs. It took her ten or fifteen minutes to calm me down and reassure me that nothing had changed.

  “Do you remember that night?” I asked her.

  “Oh, sweetie, how could I forget?” Mom said.

  AS SOON AS my brother and I were able, we began reading to ourselves. Sometimes Dad would read chapter books to us while Mom shared picture books with my sister. Dad loved Ian Fleming’s Chitty Chitty Bang Bang and Roald Dahl’s Charlie and the Chocolate Factory. So did we.

  There was one sure way to avoid being assigned an impromtu chore in our house—be it taking out the trash or cleaning your room—and that was to have your face buried in a book. Like churches during the Middle Ages, books conferred instant sanctuary. Once you entered one, you couldn’t be disturbed. They didn’t give you immunity from prosecution if you’d done something wrong—just a temporary reprieve. But we quickly learned you had to both look and be completely engrossed—just flipping pages didn’t count.

  Almost all the earliest conversations I remember with my parents were about books: Why didn’t the men understand that Ferdinand just didn’t want to fight? Why is Chitty Chitty Bang Bang’s license plate GEN 11? The answers, according to Mom and Dad, were: People can be mean, but they can learn not to be, and Try to figure it out yourself. (The license plate spells “Genii” but with number 1’s in place of letter I’s—it was, after all, a magical car.)

  Mom and Dad spent hours every week reading—and whole weekend days. Mom was always a little amazed at parents who thought their kids should be reading more but who never read themselves. It reminded me of a line I’d heard a Denver newscaster say, in all seriousness, during host chat: “I like books. I don’t read them. But I like them.”

  I was an indoors kid: reading, painting, spending endless hours in my room chatting about books and records and movies with my best friend. My brother, also a big reader, was the athletic one.

  When I was nine, I fell head over heels in love with The Hobbit by J.R.R. Tolkien. I read it when we were on vacation in Morocco. I’d become terribly sick with a temperature of 104, and the Moroccan doctor gave me the only medicine he had, which turned out to be almost pure morphi
ne. Feverish, drugged, and delirious, I lay on a bed in a luminous house in Tangier, mint tea by my side, reading The Hobbit for days on end as I drifted in and out of consciousness. I remember the tea, hot and sweet and delicious, and the breeze from the ocean, and the whitewashed walls. I remember the handsome Moroccans who would come in and out of the room to make sure I was okay. And most of all I remember The Hobbit, the most phantasmagorical book I could ever imagine. Only years later did I discover that half of what I remembered was Tolkien and the other half the product of my febrile, narcoticized mind.

  After I recovered, I went on to the full Lord of the Rings. My brother, meanwhile, was reading C. S. Lewis’s The Chronicles of Narnia while I was blissfully stuck in Tolkien’s Middle-earth. We used to argue about which series of books was better, just as we argued, sometimes ferociously, about the merits of Bob Dylan (my brother) versus John Denver (me), or, during the year we were in England, Liverpool (Doug) versus Manchester United (again me, mostly because I liked a soccer player named George Best). As a result, I always believed that Tolkien versus Lewis was just a matter of taste and rivalry. (We had no idea that Tolkien and Lewis, fellow dons at Oxford, had been good friends). Mom believed differently. “I’ve always thought it was interesting that your brother preferred the Narnia books and you loved the Tolkien. I think your brother liked the Christian symbolism of the Narnia books—you just weren’t interested in that.”

  Ironically, I recently learned that Lewis went to great lengths to deny that his books were Christian allegory, and that Tolkien, a devout Roman Catholic, insisted that his books were fundamentally religious. To me, Tolkien’s series has always seemed wonderfully and purely pagan.