The End of Your Life Book Club

by Will Schwalbe

  “Left or right?” Mom asks, as she always does.

  “It’s this way, Mom, to the right.” My mother usually had a pretty good sense of direction, but this turn is always to the right, and she always needs to ask me.

  A nurse, one of Mom’s favorites, leads us into an examining room and tells us that Dr. O’Reilly will be with us soon. Usually “soon” is a minute. Sometimes it’s more like ten or fifteen. Although Dr. O’Reilly is a doctor who rarely keeps you waiting long—she clearly does her best to wait to summon you from the land of the blond wood and upholstery until she’s ready—any delay is always tough. Nowhere else does Mom look quite so old or tired or sick as she does while waiting here. The light draws harsh attention to the lines on her face and to her mottled hands. I look down; her ankles are swollen again. She rubs her thumbs against the tips of her other fingers.

  She has a list of questions she wants to ask, and she’s given me a copy. She’ll also give a copy to the doctor. We rehearse the questions.

  “So you’re going to ask her about the numbness, right?”

  “Yes, the numbness. And the stomach problems.”

  “Yes, we’ll make sure to ask her about those.”

  “And whether it’s okay for me to plan a trip to Geneva,” Mom adds.

  “Yes, that too,” answers Doug.

  “And about going to Vero Beach and getting chemo down there. I really want to skip some of the winter and spend time there when it’s horrible here.”

  “Well make sure to ask,” I say.

  The final item on the list is just a simple phrase: “Other questions.”

  “And you have other questions, right?” I ask. Mom had said she wants to ask how much time she has left.

  “Yes, I have a big question.”

  And then Dr. O’Reilly enters. She’s Irish and is indeed tiny, as Mom promised—about five feet three or four, and very thin. Her coloring is fair, bordering on transparent. I’m struck by her handshake—it’s the quickest firm handshake I’ve ever experienced. She talks in soft, staccato bursts and fixes you with an intense gaze. She makes me nervous, but she conveys tremendous authority.

  The news is good. Some of the tumors have shrunk dramatically, and there are no new ones. The chemo is working.

  Before any of us can really absorb this great turn of events, there’s Mom’s physical exam (she is behind a curtain drawn across the room; Doug and I sit on the far side of it) and then the questions, both from Dr. O’Reilly to Mom (tiredness? nausea? numbness?) and from Mom to Dr. O’ Reilly. But Mom stops short of the last.

  “Do you have any other questions you want to ask Dr. O’Reilly, Mom?” I prompt.

  I look over at Mom. She seems lost in thought. Everything’s silent as we all wait for the last question.

  “Yes I do,” says Mom. “Are you taking a holiday this year, Dr. O’Reilly? I hope you’re getting home to Ireland to see your family.”

  THE TUMORS HAVE shrunk. The tumors are shrinking. Amazing. Those extraordinary chemicals, with their remarkable names, now sound totally different: Gemcitabine. Xeloda. Before they sounded like harsh detergents. Now they sound cool and magical, like a new rock band you’ve come to love. So there’s more time for Mom and all of us with her, and more time before Mom wants to ask how much more time there is. I can go on with my busy life of meetings and drinks and dinners. She can go on making plans for hers: concerts and visitors and movies and trips.

  And we now need a book for our book club. Being an optimist, I’ve brought with me a new book by Geraldine Brooks, the author of March, a Pulitzer Prize–winning novel that invents a life for the absent father in Louisa May Alcott’s Little Women. It was one of Mom’s recent favorites. The new Brooks novel is called People of the Book, and I’ve managed to score two advance copies from a friend who works for her publisher. Mom has brought a book for me, too: The Lizard Cage by Karen Connelly. With the good news from the doctor, we exchange books. Everything is back to the new normal again. There will be more meetings of the book club.

  FOLLOWING OUR VISIT to Dr. O’Reilly, Mom sent me a new entry to post to the blog, as always written in the third person by her as if by me. I added the last paragraph.

  After two great days on Friday and Saturday, Mom had two bad ones on Sunday and Monday. Today is looking better.

  She read an amazing book about life in prison in Burma called THE LIZARD CAGE by Karen Connelly, which, Mom says, makes one forget any problems here. She is looking forward to going to The Messiah. Dad’s conductor, Nic McGegan, is leading the New York Philharmonic at Avery Fisher Hall.

  I (Will) am about to venture out and try to start and finish my Christmas shopping. Thankfully, it’s just beautiful outside.

  I’d read People of the Book but had been so busy shopping that I hadn’t had time to start The Lizard Cage. Then Christmas, with all its parties and obligations, was in full swing. Soon it was New Year’s Eve. And though the news had been good and there were so many reasons to be hopeful, there was no ignoring the fact that Mom was terribly ill. Her hands were numb; she was weak, nauseated, and exhausted from the chemo; and worse, she had more of the terrible mouth sores, which made speaking painful and eating difficult.

  The holiday made things worse. Of course, you can tell yourself that New Year’s Eve is just a day like any other. But there’s the ball dropping in Times Square and the relentlessness of the papers and television and everyone asking what you are doing and where you are spending your time and what your resolutions are for the coming year.

  The plan was to stop by Mom and Dad’s in the early evening for a glass of champagne. When David and I arrived, Mom was in her usual spot on the sofa. On the Chinese coffee table in front of her was Geraldine Brooks’s People of the Book. She’d just finished it.

  “I think the Brooks is amazing,” she said. “It reminds me so much of the time when I was an election monitor in Bosnia.” Brooks, who was born in Australia, had been a Wall Street Journal correspondent in Bosnia, among other global hot spots. “But it’s so rich—it’s like many books in one. You know I don’t usually read thrillers. But the story Brooks makes up about the creation of the book—the Sarajevo Haggadah—and how people risk their lives to protect it is really a thriller. I adored Hanna, the rare-book expert. And so many other characters. But the Haggadah itself is a character, the main character. Did you feel the same?”

  I sat down on the sofa beside Mom. “I know just what you mean about the Haggadah being a character. I started by thinking: Well, it’s only a book. But as you get to know its history—all the sacrifices people made for it—you start to care for it desperately. The wine stains, the insect wing, the saltwater—it was so cool to see how each of these is a clue to how the book survived, but each tells the story of some person from history who cared enough to save it.”

  “Don’t forget the white hair,” Mom added, referring to the clue about the book’s creation. Her own hair, gray and white, was definitely continuing to thin—but still very much there. She tucked some errant strands behind her ears. “But I did think Hanna’s mother was just horrid.”

  The main character’s mother is a distinguished doctor, and when she isn’t ignoring her daughter, they get along dreadfully. Part of the mystery in the book is Hanna’s paternity—something her mother doesn’t share with her until near the book’s end. And part of the suspense revolves around whether Hanna and her mother will ever find common ground.

  “I don’t know. I mean—I felt quite a lot of sympathy for Hanna’s mom.”

  “I didn’t,” Mom said.

  “But she was a working mother at a time when that was very unusual.” I suddenly felt self-conscious that I was pointing this out to Mom.

  “That’s not really a good excuse, Will, for not being kind.”

  “But do you think people are more forgiving of male doctors when they aren’t nice? That people expect women doctors to be more, well, nurturing?”

  “I don’t know what other people thin
k—but I know what I think,” my mother replied. “I think everyone needs to be kind—especially doctors. You can be a very great doctor and still be kind. That’s partly why I like Dr. O’Reilly so much more than the first oncologist I saw—not because she’s a woman but because she’s kind.”

  “But you always taught us that sometimes people aren’t nice because they aren’t happy.”

  “Yes, but maybe those people shouldn’t be looking after other people. And I’m also talking about kindness, not just about being nice. You can be gruff or abrupt and still be kind. Kindness has much more to do with what you do than how you do it. And that’s why I didn’t have much sympathy for Hanna’s mother in People of the Book. She was a doctor and a mother and she wasn’t kind.”

  “But did that make you like the book less?” I asked.

  “Of course not! That’s one of the things that made it interesting. But the thing that made it most interesting is what it had to say about books and religion. I love how Brooks shows that every great religion shares a love of books, of reading, of knowledge. The individual books may be different, but reverence for books is what we all have in common. Books are what bring all the different people in the novel together, Muslims and Jews and Christians. That’s why everyone in the book goes to such lengths to save this one book—one book stands for all books. When I think back on all the refugee camps I visited, all over the world, the people always asked for the same thing: books. Sometimes even before medicine or shelter—they wanted books for their children.”

  Just then Dad, who had been chatting with David, interrupted us. Given that it was New Year’s Eve, though still early in the evening and hours away from the end of 2007, he wanted to create more of a party atmosphere, so he put on a lively CD by one of the artists he represents. He didn’t quite have the volume under control, and the first notes blasted through the living room. It startled Mom, and a burst of panic crossed Dad’s face. Before Mom’s illness they’d developed the ability to selectively ignore each other, a habit I’ve witnessed in most long-term couples. But after Mom became sick, Dad grew watchful, keenly aware of how everything affected her: if the air-conditioning was too cold, the sun too direct, her tea out of reach, Dad would struggle to fix it. When he fussed too much, Mom looked a little irritated. But she was also clearly touched by his attentions.

  While I was listening to the music, now at a pleasant volume, I noticed something else on the table: Mom’s copy of Daily Strength for Daily Needs, with the marker on the last page.

  Mom soon excused herself for a minute. (How much pain was she in? She wouldn’t say.) Dad went to get champagne for us and other family and friends who would be stopping by, but not for Mom and himself. He had given up drinking, fearing that alcohol would make him less alert to her needs. For the two of them, he’d bought sparkling apple cider—not something either of them liked but having the necessary bubbles. I flipped open to read the marked passage in Daily Strength:

  “It is not by regretting what is irreparable that true work is to be done, but by making the best of what we are. It is not by complaining that we have not the right tools, but by using well the tools we have. What we are, and where we are, is God’s providential arrangement—God’s doing, though it may be man’s misdoing; and the manly and the wise way is to look your disadvantages in the face, and see what can be made out of them.”—F. W. Robertson

  When Mom came back, I was still reading. The passage got more religious after that. Mom saw me reading it and smiled. She said nothing. I said nothing. But I think she knew that I thought she’d left the book out for me to read. The coffee table was a staging area for things to be discussed. Just then I noticed another item there, a form letter. Mom saw me looking at it. “That’s the letter we sent out for the Afghan library.”

  “How did it do?” I asked.

  “We got some contributions—but not as many as I would have liked. We finally got a letter of support from President Karzai. That was amazing. But there’s so much more that needs to be done. And I’m just so worried about it all.” After a while she added: “If Afghanistan doesn’t have books, the people there don’t have much of a chance. So that’s my New Year’s resolution. I’m going to get this library built.”

  “Are you sure you feel up to that?” I asked.

  Mom frowned at me. “If I’m not, I’ll stop.” A reminder—not dead yet. She did not feel well that day, but the scan had been very good news. We weren’t to count her out. She then turned her attention back to my life.

  “And I have a New Year’s resolution for you, Will,” she said. “You need to stop complaining about your job and just quit it. I’ve told you this before. Not everyone is lucky enough to be able to do that.”

  I helped myself to more champagne and looked around at all the things surrounding Mom and Dad. The music was Mozart’s Exsultate, jubilate. Paintings and drawings were on every wall. There was also Mom and Dad’s collection of pots by English and Japanese potters. The pots, grouped by potter and by color, took up a few of the shelves that lined the near wall. On most of the rest of the shelves were books. She also had, just to her left, an elegant mahogany table she’d inherited from her grandfather, which was crammed with framed photos of family and friends and students: us at all ages and in various groupings; countless babies and smiling couples; sepia pictures of her grandparents; black-and-white photos from her and Dad’s childhoods; and an exploding universe of pictures of her grandchildren. From where Mom loved to sit, she could look at her pots, and her books, and her paintings, and her photographs.

  Mom rarely sat still, though: the perch was also her command center, with the coffee table serving as a desk and the phone within easy reach. This evening she wanted me to look at some new pictures she’d received—from three Liberian refugees she’d helped come to the United States to study, and from a Laotian refugee who’d settled in Minneapolis and was married and working in medicine. All of them had become family, and all of them had made special trips to visit her when they heard she was sick. Mom wanted me to see the latest photos of them and their children and tell me how they all were doing.

  I thought then about whether I was indeed going to quit my job. Looking at the new pictures Mom was so proudly showing me, I was reminded how much she had gained by quitting one of hers.

  “I Am Sorrow”

  Almost twenty years earlier, in the spring of 1988, when my mother was head of the high school at Nightingale, a postcard arrived one day in the mail. It simply said: “Dear Mary Anne Schwalbe. I am a nun from the Philippines working in a refugee camp in Thailand and I need your help.” It was signed: “Sister Mater, Daughter of Charity.”

  It would be years before my mother would find out how Sister Mater got her name and address. It turned out to be through either a complete fluke or an act of God, depending on your religious beliefs. What happened was this: A student of Mom’s had been wandering through northern Thailand. He had a stack of postcards and a wad of small bills and couldn’t find a post office and didn’t speak Thai—so when he literally bumped into a nun on the street, he figured he could trust her to mail them for him. She was not only a good Daughter of Charity but also, Mom liked to say when she told this story, a great fund-raiser. The nun mailed the cards—but copied down the addresses first.

  Mom replied to Sister Mater of the Mysterious Postcard, and Sister Mater then wrote a long letter to her. They wound up writing to each other for years. In her letters, Sister Mater would include pictures of the handicapped Hmong children with whom she worked at Ban Vinai, the largest camp in Thailand for refugees from Laos. There were 45,000 refugees at Van Binai, and 80 percent of them were women and children. Hundreds of the children were severely disabled.

  Soon into the correspondence, Sister Mater began sending Mom marked pages from various catalogs. Mom would pay for the items and have them shipped to the camp. It was twenty dollars here and thirty dollars there. A book or two. A magazine subscription. Mom enlisted her students to coll
ect books and paper and crayons to mail to the children of Ban Vinai. Then one day Sister Mater wrote Mom a letter more or less the same as all her others—except in one respect. Instead of asking Mom for a small amount, she asked for thousands of dollars. Mom wrote right back and said she couldn’t afford that kind of sum. Mom’s letter must have sounded a bit cross, as the nun replied immediately and apologetically, saying that as a nun she had no idea whatsoever about money.

  They continued as before, but then Sister Mater mentioned in a letter that one of her friends from the Philippines was coming to volunteer at the camp. If Mom couldn’t afford to give more money but wanted to help more, perhaps she could come work at the camp too?

  My mother was an incredibly orderly and careful person, but she also had that impulsive streak. So when Sister Mater’s suggestion arrived, Mom decided to take a semester’s leave from her school and move to the refugee camp.

  It was just then that Nina was getting ready to graduate from college.

  My mother and Nina have always been tremendously close, but they were, at that moment, going through some minor mother-daughter agita and weren’t able to agree on a variety of things. Somehow they both agreed on one thing: Nina should go with Mom to work in the refugee camp. I remember thinking, This is either the best idea in the world or the worst. I suspected the latter. So did my father and brother.

  But off they went. By plane to Bangkok. Then there was a terrifying, careening ride in the back of a truck over mud roads at night for twelve hours. What have I gotten Nina into? Mom thought. Only then did she realize that she’d never even bothered to check out whether the nuns and the camp were real. And then they arrived—at the grimmest place they’d ever seen.

  Here, from Mom’s journal, are some of her first impressions of Ban Vinai: “Everything covered in swirling dust—thousands of almost naked children who screamed and/or ran when they saw foreigners—hundreds of mangy dogs—runny noses everywhere—scalps that looked singed—sores all over bodies.”