The End of Your Life Book Club

  Mom’s chemo was now done for the day, but, once again, we had a wait at the pharmacy. Since we hadn’t traded any new books or fixed on one thing to read that pre-Thanksgiving week, we were discussing various books we’d read throughout our lives. “Actually,” Mom continued, “I’m not sure I’ve ever met anyone who really liked both Tolkien and Lewis. Everyone seems to like one or the other.”

  “And which do you like?” I asked Mom.

  “The Lewis. But I think your brother and I both envied how much you loved the Tolkien. We liked the Narnia books a great deal—but you were obsessed with the Tolkien. You talked about Bilbo Baggins so much, I felt like he was a member of the family. You started writing everything, including your name, in ancient runes. I drew the line when you wanted to smoke a clay pipe. You were nine.”

  “Did you ever get that obsessed about a book?”

  “All the time. Poetry. Gone With the Wind. And I would get obsessed with the plays I worked on—especially the ones right around when your father and I were first married and still living in New York: Five Finger Exercise by Peter Shaffer and Harold Pinter’s The Caretaker. Working on a play absorbs you completely. I really missed that when we moved to Cambridge.”

  In the late 1950s, before she met my father, Mom had worked for the producer Irene Selznick (after an introduction from Selznick’s son, a college classmate) and then, both before and during her first years of marriage, for the producer Freddie Brisson and his actress wife Rosalind Russell. (Mom loved to tell of being sent to Paris to pick up Rosalind Russell’s furs and jewelry, which Russell had accidentally left there, and then being instructed to wear them through customs with such aplomb that the agents would be convinced they belonged to Mom so no duty would have to be paid.)

  Mom had also been running New York auditions for the London drama school she’d attended after college—and continued to do so while pregnant and right up until we moved to Cambridge.

  While casting about for a job after the move, Mom realized that her experience casting plays and interviewing kids for drama school could be put to good use: knowing which person was right for what part made her a natural for the Radcliffe admissions office. Over the next decade or so, she became the director of admissions, first for Radcliffe and then for Harvard and Radcliffe, and she was eventually appointed associate dean of admissions and financial aid.

  The job of gatekeeper to the college was a coveted role. Mom was impervious to bribes (although we did not let some amazing Iranian caviar go to waste, nor did we refuse to eat the fortune cookies whose fortune read “You will admit Bella Wong,” the daughter of the local Chinese restaurant owner). Mom was also impervious to threats. Once someone showed up at her office with a gun and threatened to kill her if his kid wasn’t admitted. His kid wasn’t. Bella was.

  Dad worked. Mom worked. Several decades before today’s crop of wildly scheduled children, we were left pretty much to our own devices, mildly supervised by a succession of exchange students and recent graduates. We did have piano lessons and soccer practice and theater. But we also had bicycles. It was our responsibility to be where we were supposed to be when we were supposed to be there. We were latchkey kids of sorts—rustling up a snack after school, and then getting lost, often literally, until dinner. On weekends, when Mom and Dad had settled into the living room, each with a stack of books, we had two options: we could sit and read, or we could disappear until mealtime.

  As for television, we could, in theory, watch as much as we wanted. But there were only three channels, and there was never much worth watching during the day—other than Candlepins for Cash, a uniquely New England show, on which you tried to knock down anorexic bowling pins with a very small ball; Star of the Day, a precursor to American Idol, of very dubious production quality; and old movies, almost always with Shirley Temple in them, or so it seemed. There’s a limit to the number of Shirley Temple movies that even I, who adored her, could withstand.

  So when we weren’t running around, we read.

  I wasn’t aware that I was one of the few kids in my class with a working mother—and I think that was partially because even the stay-at-home mothers subjected their kids to a kind of benign neglect back then. It was also because Mom never referred to herself as a working mother. She was a mother. And she worked. “People don’t talk about working fathers,” she once said to me. She came to as many of our school plays and sports events as she could. “I think parents should do their best not to be unhappy. That’s the worst thing for children—to have unhappy parents. If you want to work outside the home, you should. If you can afford not to and you don’t want to, then you shouldn’t.”

  “So you never felt guilty?”

  “Not for a second.”

  Long before “take your child to work” days, Mom had her own version—take your work to your children. We were frequently pressed into service—reorganizing the application folders, for example, so that the personal essay would be the first thing Mom would see. Mom wanted to read each applicant’s free-form essay prior to looking at anything else so she could get a sense of the applicant as a person before she looked at grades, SAT scores, or even gender.

  “But did the other mothers approve of your working?”

  “Well, I know some of them thought I must have been neglecting all of you. Remember when your brother decided he wanted to have dog biscuits in his lunch box? And you and your sister did the same? I think one of the other mothers had the school call me about that. I told them I’d checked with your pediatrician—and he said that the dog biscuits wouldn’t do you any harm and would probably be good for your teeth. But no, I don’t think most of them judged me. Beside, lots of people were doing interesting things. It was the sixties, after all.”

  When I look back, I do remember that lots of my friends’ parents had fascinating lives. We lived in an insular community where almost every family had some connection to Harvard or MIT or Brandeis—so when we thought about our parents, and I’m not sure we thought about them all that much, we were more aware of their connections to the universities than of what job they did or didn’t have. And we were very aware of their hobbies and passions, too: this one painted; this one made yogurt.

  We also saw a lot of turmoil: the war in Vietnam on television every night; protest riots in Harvard Square; the assassinations of Bobby Kennedy and Dr. Martin Luther King, Jr. The kids with much older siblings told us most of what we knew about the draft, the civil rights movement, and other timely topics, and they introduced us to the music of Woodstock. The rest we learned from dinner conversations and Life magazine.

  Books loomed large. Every family we knew had bookshelves in the living room. Parents’ friends and friends’ parents wrote books. And everyone read the same ones, often dictated by Book of the Month Club. The Family of Man by Edward Steichen, a book of photography from around the world, with a prologue by Carl Sandburg, adorned nearly every coffee table. John Updike’s scandalous Couples, a literary novel about adultery, was in every parents’ bedroom. Everyone had John F. Kennedy’s Profiles in Courage. Mystery novelists Ngaio Marsh and Agatha Christie and Erle Stanley Gardner were on the shelves of everyone who loved mysteries. Leon Uris was a staple. Maybe Michener. And when Solzhenitsyn’s The Gulag Archipelago and Günter Grass’s The Tin Drum were published, they instantly appeared on the Books That Must Be Read shelf in every house.

  I sometimes think Mom had a secret plan to encourage us to read beyond our level. She would announce that certain books were a little old for us. Nothing made us read them faster. I read The Autobiography of Malcolm X when I was ten. She was right—it was too old for me, and when I returned to it later, I was amazed to discover how much I’d missed. Zoot suits were about the only thing that had lodged in my mind. We discovered by ourselves other books that were too old for us. Fear of Flying by Erica Jong was published when I was eleven and both shocked and fascinated me with its descriptions of anonymous screwing. As did Everything You Always Wanted to Know Abou
t Sex But Were Afraid to Ask, a book Mom and Dad didn’t, as far as we could discover, have. But other parents did and kept it securely tucked away, only for it to be unearthed and pawed over by their little no-neck monsters and us.

  At the dining table we could always talk about a book we were reading. I went through a bizarre Paul Revere phase. After reading and loving Johnny Tremain by Esther Forbes, a novel about a boy who is apprenticed as a silversmith to Paul Revere and who burns his hand horribly in an accident, I then discovered the same author’s 1942 Pulitzer Prize–winning biography of Paul Revere himself, Paul Revere and the World He Lived In. I read it eleven times in a row, marking each completion with a check on the inside cover, like a prisoner keeping track of years in captivity.

  “Come on, ask me anything about Paul Revere, anything!” I would beg my brother and sister over meals. When they wouldn’t, Mom would gamely ask me a question. Sadly, I’ve forgotten almost everything I knew about Revere, except for the most basic facts and a third of the Longfellow poem fictionalizing his famous ride. (I now suggested to Mom that she and I reread the Esther Forbes biography for our book club so I could say I’d read it a dozen times. Mom nixed that, saying fondly but firmly that she’d heard enough about Revere during my childhood to last several lifetimes.)

  As a kid, I also went through an Alistair MacLean phase: Where Eagles Dare, The Guns of Navarone, Puppet on a Chain. I don’t usually remember flap copy of books I read as a child, but I’ll never forget a sentence that described that last title: “From the moment he landed in Amsterdam, he knew he was in Dutch.”

  My favorite MacLean books were the ones where anything was possible if you pulled together the right team. Sure, someone on the team would betray you. But you’d find out in time and overcome insurmountable odds—including horrific weather or some horrific accident at sea—to achieve your objective. There would be a terrible cost. Someone, usually one of the band of brothers, would have to die. You would grieve—and then move on. Because it wasn’t about you—it was about something much larger, like fighting Nazis. MacLean had served from 1941 to 1946 in Britain’s Royal Navy—and his World War II stories are by far his best.

  I would stay up for hours past my nine P.M. bedtime rereading by flashlight the Revere book or reading MacLean. Mom knew, but she never busted me or scolded me. Now I realize that Mom must have been exhausted, juggling all she was doing: three children, a husband, a rambling, drafty house, and a big job that required traveling across the country to meet high school guidance counselors and attend conferences. She did have some help—especially from Mrs. Murphy, an Irish grandmother who looked after my sister in the afternoons and who made delicious meat loaf once a week. (Poor Mrs. Murphy would later have a stroke but went on looking after my sister. I used to tell people that my family’s move back to New York in 1979, after almost fourteen years in Cambridge, was because Mom couldn’t bear to tell Mrs. Murphy that she’d lost the ability to make meat loaf but also couldn’t stand the waste of throwing a whole inedible meat loaf in the garbage every single week.)

  I remember one day when Mom’s endless commitments finally got the better of her. My brother, my sister, and I were sitting in the kitchen in our Cambridge house. I was eating cereal and worrying about the school day. Doug and Nina were probably chatting with or annoying each other. There were just a few moments before we needed to sling on our coats and head out into the cold. Mom came down the stairs, looking a bit harried, which was unusual. There was something that I wanted to tell her, and I tried to catch her eye.

  I watched her go to the tap for a glass of water. Surrey, our English setter, lay on the floor. Mom had a pill in one hand, which she shoved into a little ball of hamburger that she’d fetched from the refrigerator, and then put into Surrey’s mouth, massaging her neck so that she would swallow it. Then Mom washed her hands, took another pill, and swallowed that.

  Finally I was able to catch her eye. Now I could tell her the thing I really wanted to tell her. But before I could speak, Mom’s eyes grew wide, and she said a word I’d never heard her say, followed by “I just took a worming pill and gave the dog my birth control.”

  That was the only time I’d ever seen Mom panic—although she would quickly discover, after a phone call, that the dog would be fine and so would she. Additionally, she’d be wormless. The dog had already been spayed, so puppies weren’t a possibility.

  But mostly, when I look back, what I remember is not Mom rushing about; it’s Mom sitting quietly in the center of the house, in the living room, under the swirling colors of a Paul Jenkins painting; there would be a fire in the fireplace and a throw over her lap, her hands sticking out to hold a book. And we all wanted to be there with her and Dad, reading quietly too.

  RECALLING THANKSGIVINGS PAST, and with this first Thanksgiving after Mom’s diagnosis ever nearer, we realized how different our lives were now, revolving around such things as the timing of Mom’s treatments. She would usually have good days the day of the treatment and for one or two days after; then she would have days that were “not so good.” Her new mantra was a piece of wisdom given to her by a friend of my sister who specialized in palliative care: “Make Plans and Cancel Them.” But Mom almost always felt compelled to go ahead with any plan she’d made, whether she was feeling up to it or not.

  Not a day went by that she didn’t keep up with her emails and calls—to her friends and to her brother. She spoke to Doug, Nina, and me almost every day—always with reports on each of us and often on the progress of the Afghan library. She was hugely pleased that a brilliant and charming young New York Times reporter named David Rohde had agreed to come on the board. And the timing was perfect—he was just about to take a leave to write a book on the region and therefore would be spending time there.

  One of the cruelest things about cancer is the side effects of the treatments. Rodger had warned her that she would feel so awful, she wouldn’t be able to get off the bathroom floor and would lie there in misery. That did not turn out to be the case. But the mouth sores she got meant she couldn’t eat or drink or speak without real pain. Then came the diarrhea and the constipation and the exhaustion. When it turned out her red-blood-cell count was low, a transfusion helped. But often she was just plain tired. And keeping weight on was a constant struggle—she wasn’t hungry, and the chemo made everything taste awful.

  Thankfully, Dr. O’Reilly was all over this. She understood, in a way that many doctors don’t, that a dreadful mouth sore or needing to go to the bathroom five or ten times in a morning needs treatment just as the cancer itself does. Treating a disease that isn’t curable is, in essence, palliative—the goal is both to slow the progress of the tumors and to make life worth living while you do. So every visit to the doctor involved an interrogation in which Dr. O’Reilly tried to get Mom to be honest about how much pain she was in (with Mom refusing even to use the word pain, preferring to talk about the level of her discomfort) and adjusting the medicine accordingly

  Mom had always done a big, festive Thanksgiving, and we’d always invited everyone we knew who lived far away and couldn’t get home. In the Cambridge years, we often had Iranian and Pakistani students come—not just for Thanksgiving dinner but to spend the whole week. Perhaps this was where my mother’s interest in that region began. After Mom started working with refugees, we might be joined by a family recently settled in New York from Bosnia or some students from Liberia, thousands of miles away from their families and just starting to experience the cold of New York.

  But this year Mom’s doing Thanksgiving, even for our immediate family, was out of the question. So my friends Tom and Andy said that they would have Thanksgiving dinner at their place. All Mom and Dad had to do was show up.

  MOM CALLED ME on Thanksgiving morning. She wasn’t doing so well.

  “Today’s not great,” she said. She would play it by ear, but she thought she might not be up for Thanksgiving dinner. What made it especially frustrating was that just a week before she’d
had some very good days. She’d gone to two concerts, taken the subway to work a few days in a row, seen friends, caught up on email. She’d even regained some appetite.

  Mom was now two months into her diagnosis, and it was nearly impossible to tell how things were going. It was like following the stock market. When the Dow goes down, it could be a minor correction before a surge, or it could be the start of a tumble. So if Mom felt worse one day, maybe it was the chemo—or maybe the cancer. Even when things seemed to be getting better, we couldn’t be sure what was going on. It could be genuinely good news (the tumors were shrinking), or it could be what stock market folk call the “dead cat bounce” (a vivid but dreadful metaphor for the appearance of hope when there’s none to be had). Correction or crash? Surge or bounce? All we could do is guess a few days at a time until Mom’s next scan.

  The unpredictability was maddening for Mom. She had many more of what she called the “good days” than she did of the “not so good days” and was very grateful for that: she just wished she could be right more often about which would be which. Mom updated the Will’s Mary Anne Schwalbe News blog as best she could, trying not to be too hopeful when things went well, and always tempering the bad reports with a sense of hope. We continued to pretend that I was writing the posts about Mom, when in fact she was writing them about herself in my voice (“Today, Mom …”) and then emailing them to me to post.

  For obvious reasons, I avoided referring to Mom as my ghostwriter when talking with her or others in the family about the blog. Actually, I avoided referring to the arrangement at all for fear of making her self-conscious about it. She would send me an email saying, “Why don’t you say something like the following?” and there would follow a few paragraphs that I would post verbatim as though I had written them about her, when she had written them about herself from my perspective.