The End of Your Life Book Club

by Will Schwalbe

  I kept pausing to point out to Mom some of my favorite passages. Before Eilis leaves for Brooklyn, she watches her sister going about daily tasks. Tóibín writes of Eilis, “And then it occurred to her that she was already feeling that she would need to remember this room, her sister, this scene, as though from a distance.” As I showed it to Mom, I was struck by the thought that I was attempting to be fully present while also, like Eilis, trying to fix images in my head—just as I’d tried to freeze time with a camera nearly two years before in Maine, when I’d taken that picture of Mom with all her grandchildren.

  Tóibín also writes of Eilis: “What she would need to do in the days before she left and on the morning of her departure was smile, so that they would remember her smiling.”

  Eerily, just then, from across the room, a woman rose and caught my eye, as if to ask permission to interrupt, which she then did.

  “Excuse me,” she said to Mom, “but I’ve seen you here before, and I just have to say that you have the most beautiful smile.”

  Mom looked a little surprised, and then beamed.

  “Is this your son?” continued the woman.

  “Yes, this is Will, my second son. I also have a daughter.”

  “Your mother,” she said to me, “has the most beautiful smile.”

  Then she went back to the sofa.

  Reading further, I came to “Some people are nice … and if you talk to them properly, they can be even nicer.”

  “Wasn’t she nice,” said my mother. “That woman. So nice.” And Mom went over to her and sat next to her, and they held hands and talked. Or rather, Mom listened.

  I kept reading as they talked. Soon I was at a vivid part of the book, the transatlantic crossing, a rough one, in which Eilis is desperately seasick and vomits everywhere.

  Of course, the irony of reading about nausea while surrounded by people undergoing chemotherapy wasn’t lost on me, or on Mom, when I mentioned where I was in the book.

  DAD MET US there, right before it was time to see Dr. O’Reilly. Mom was now officially on home hospice, meaning that the only goal was to make her as comfortable as possible while she died, preferably at home. She could have home visits from hospice nurses and attendants whenever she wanted and as often as she needed. She was also told that she could resume treatment at any time, if she wanted. Nessa had come back and had met with us all, explaining how it worked and all the services available, including massage and guided meditation; the use of a hospital bed; round-the-clock care at home when the time drew close; and medicines we would store in the refrigerator and could give Mom to help with the pain as she neared death. Mom had no doubt whatsoever that home hospice was the right course for her. She’d always said she would let us know when it was time. It was time.

  So it would be a very different kind of doctor’s visit. As if to mark that, we met in an examination room where we’d never been. It was identical to the others, but different, a little smaller. It had been raining all day, so I had with me an umbrella, which kept falling over. Dad and I had to cram together a bit for Dr. O’Reilly to draw the curtain and do her examination.

  Why wouldn’t the damn umbrella stop falling over?

  Mom had her usual list of questions—the swelling, the Ritalin, the steroids, Megace for the appetite. Dr. O’Reilly answered them all and then told us what we knew: the tumors were growing very rapidly.

  I looked at the sheet of questions Mom had prepared. The last item on the list wasn’t a word or words but punctuation: a single lone question mark.

  “Mom,” I prompted, “was there something more you wanted to ask the doctor?”

  There was silence.

  “Well, first, now that I’m on hospice, they said I could still come see you. And I wanted to see if that was okay.”

  “Of course,” said Dr. O’Reilly. “We’ll make an appointment for a scan and another visit in September.” Mom had been breathing quite shallowly. I could now hear her breathe more easily. We were planning things for September.

  “And I have some questions about the hospice. Nessa was wonderful. But I just want to ask again what my family should do when I die.”

  “Well, they’ll call the funeral director. We can give you one, or you can find one through the church.”

  “And,” said Mom, “I need to have a copy of my ‘Do Not Resuscitate’ for home.”

  Dr. O’Reilly suggested we just do a fresh one—Mom could fill it out, and she would sign it. She had someone bring one in—one of the other nurses Mom loved who had been helping. Mom asked me to fill it out for her, and I began:

  M-A-R-Y A-N-N-E

  Mom looked over—her face a bit panicked. “Sweetie, you’ve done it wrong. There’s no e on the end. It’s Mary Ann.”

  “But you’ve always spelled it with an e on the end,” I said.

  Then I realized that even though Mom had indeed spelled her name with an e at the end of Anne ever since she was a little girl—maybe because she liked the more English Anne, as in Queen Anne—her name was actually Mary. And her middle name was Ann. Without an e. I’d never known Mom’s real name.

  I thought of Wouk’s Marjorie Morgenstern, who had changed her name to Morningstar. I hastily scribbled over the e with the pen. And that’s how the DNR order remained—with one scribbled-out letter. I worried from that point on that they would ignore Mom’s wishes and hook her up to all sorts of dreadful machines, all because of an irregularity in the paperwork—all because her son didn’t even know her name.

  At the end of the appointment, Mom had her usual questions for Dr. O’Reilly just as she had for her other favorites there. Mom wanted to know about their families, their vacations, what they were reading. But this time Dr. O’Reilly asked Mom something she’d never asked before.

  “Do you mind if I give you a hug?” she asked Mom.

  The two of them embraced, gingerly, but for what seemed like an entire minute. They were both the same height. Dr. O’Reilly was in her white doctor’s coat. Her short blond bob grazed her collar. Mom’s hair had grown back a bit now that she’d been off chemo. She was wearing a coral-colored mandarin-collar shirt, made of silk. Dad and I sat awkwardly, not sure whether to look at them or away. It’s not a very hopeful sign when your oncologist gives you a goodbye hug—but that only went through my mind later. It was a hug of genuine sweetness and affection: two people comforting each other, like sisters parting before one left on a long trip to a distant land.

  My Father’s Tears

  The part of Girls Like Us, the book about Joni Mitchell, Carly Simon, and Carole King, that didn’t have anything to do with Mom was the creative struggle of the three of them—their need and desire to express themselves by making music. Mom was not a creative person—she didn’t compose songs or lyrics or even play an instrument, didn’t write poetry or fiction, rarely kept a diary, didn’t paint or draw or make sculptures, cooked decently but not creatively, liked to have some nice clothing but didn’t spend too much time thinking about it. (To complement her pearls, she had some artisan and family brooches she liked, and quirky jewelry, made from watch innards and such, bought abroad and at craft fairs; but she wasn’t otherwise interested in jewelry.) I asked Mom if she missed acting (she didn’t) and if she wished she’d written (she said definitely not, though she did enjoy the time she tried to write a proposal, with a friend of mine, for a book on volunteering).

  So there was no competitiveness whatsoever in Mom’s love for music, art, pottery, and literature.

  It’s almost taken for granted now that people—children especially—should be encouraged to create, and one of the obvious benefits to mankind brought about by the Internet is that it has opened up worlds of creativity. Mom certainly appreciated that. But she also was content not to make things but just to enjoy them.

  “Everyone doesn’t have to do everything,” she told me. “People forget you can also express yourself by what you choose to admire and support. I’ve had so much pleasure from beautiful and chal
lenging things created by other people, things I could never make or do. I wouldn’t trade that for anything.”

  This had been a theme throughout her life. She had always gone to museums and galleries and had a rule for herself about buying art, which was to try whenever possible to buy works at galleries by young artists at a point in their career when a sale really made a difference. She still went to see as much art as she could, although walking around galleries was now proving too tiring.

  What captured her attention most as she became increasingly frail was pottery. Just as one book leads to another, so one potter had led to others; with the help of her friends in England, her love of the jolly geometric art deco work of the British potter Clarice Cliff had led her to the work of the master potters Lucy Rie and Hans Coper, and then to a new generation of young British potters, who worked with monochrome glazes and simple forms and celebrated the human touch: the slightly off-kilter shape, the uneven lip of a vase, the subtle imperfections and slight asymmetries that give character and life to inanimate objects. This was a passion she and Dad shared. Among their favorites were Edmund de Waal, Julian Stair, Rupert Spira, Carina Ciscato, and Chris Keenan.

  Looking at the pots, now from one angle, now from another, arranging them in various ways, eggshell delicate next to sturdy, watching the light come across them and cast shadows, feeling their weight and texture—all of this was a form of meditation for Mom. I would come over and see her admiring the pots with a kind of middle focus—not staring at them but quietly taking them in. Living with these beautiful objects gave her great pleasure and peace.

  Part of curating, collecting, and appreciating was editing—Mom never had much patience for junk or for crassness, and less so now that she knew her time was limited. I, on the other hand, continue to waste a significant portion of my life watching reality television, learning about the lives of dubious celebrities, and consuming cultural garbage with the feigned irony and faux populism that’s a hallmark of my generation and the ones that immediately follow. It was inconceivable to Mom why I would want to go see Return to the Blue Lagoon or sit glued to the television watching a Sunday reality-show marathon. When I’d tell her what I’d been up to, she never said anything critical, but she would make a face and quickly try to get me to change the subject. In the middle of that August, while visiting Mom at home, I started talking about a reality television show that just about everyone was discussing. When I paused, Mom asked me if I wanted to read the new Updike collection, a volume published posthumously a few months before called My Father’s Tears: And Other Stories.

  “How are they?” I asked.

  “They’re wonderful. They’re so well written. And you know, there was a very smart kid in a freshman seminar I took when I was at Radcliffe. I never really caught his name, and years later I realized it was John Updike. He was clearly brilliant even back then. And the stories bring back so many memories—like our trip to Morocco that we took as a family. And there are ones set in Cambridge, of course. Just start with one, and see what you think.”

  “Which story is your favorite?”

  “The title story. It’s a lot about death. Here …” And Mom showed me a section. It was a passage about a fifty-fifth high school reunion. It began:

  The list of our deceased classmates on the back of the program grows longer; the class beauties have gone to fat or bony-cronehood; the sports stars and non-athletes alike move about with the aid of pacemakers and plastic knees, retired and taking up space at an age when most of our fathers were considerately dead.

  It continued:

  But we don’t see ourselves that way, as lame and old. We see kindergarten children—the same round fresh faces, the same cup ears and long-lashed eyes. We hear the gleeful shrieking during elementary-school recess and the seductive saxophones and muted trumpets of the locally bred swing bands that serenaded the blue-lit gymnasium during high-school dances.

  MOM’S SCHEDULE FOR the next two weeks was mostly filled with short meetings with friends and family, and with sending emails to the ones she wasn’t able to see: her childhood friends; college classmates; the women she’d worked with day after day and who had traveled to so many places with her; her fellow admissions officers; other teachers from the schools where she’d taught; her friends on boards with whom she’d served for years and decades; students and cousins and nieces and nephews. It gave her not only happiness but strength—in the eyes of her oldest friends and colleagues and extended family, she wasn’t a painfully thin seventy-five-year-old gray-haired woman dying of cancer—she was a grade school class president, the friend you gossiped with, a date or double date, someone to share a tent with in Darfur, a fellow election monitor in Bosnia, a mentor, a teacher you’d laughed with in a classroom or faculty lounge, or the board member you’d groaned with after a contentious meeting.

  Updike was dead. But when she read him, she read a book by that smart-as-a-whip classmate who was in her freshman seminar, and the truths that he had to impart about aging and relationships spoke to her.

  I read My Father’s Tears cover to cover that night and returned it to her so she could give it to someone else. We didn’t talk about it. I had nothing to add. But every time we mentioned the title, it felt odd, as though we were talking about Dad after Mom’s death—something she rarely touched upon, and then only lightly: planning trips for us all to take without her, or dinners we would have at his club. Ever since we’d read Crossing to Safety, the Stegner, and Mom had let me know that she was sure Sid would be okay after the death of his wife, Charity, well, we had left it at that—and never returned. So we stopped mentioning the title of the new Updike. We just called it The New Updike.

  THE THIRD BOOK we read together in August was the wildest: Big Machine by Victor LaValle, a thirty-seven-year-old novelist and short-story writer. Mom had read an article about it in The Wall Street Journal while she was at my aunt’s house in the country. I mentioned this to a friend who’d published the book, and to whom Mom had given some school advice for her daughter, and before we knew it, a copy was waiting for Mom. Mine I bought.

  It’s a fantastical story—a porter/janitor, on the prompting of a note, and with the gift of a train ticket, whisks himself off to a strange Vermont colony of African Americans dubbed The Unlikely Scholars, a group tasked with investigating odd phenomena. What follows is a saga of odd beginnings, male pregnancy, Native American lore, demonology, serial killers, and feral cats. Mom was thrilled with it. Sure, she’d read the end first, but it provided barely any clues at all as to what would take place in the rest of it.

  I was excited to talk with Mom about Big Machine. One of the things that had been bothering me about so many of the books I’d read over the last decade was their sheer ordinariness and predictability. It’s not that I liked lunacy for the sake of lunacy, but if a writer can truly surprise me without throwing logic completely out the window, then that writer has me for good. Most book surprises aren’t surprising at all but follow a formula, like the dead body that’s certain to lurch out of a wreck being explored by deep-sea divers in just about every book that involves wrecks and divers.

  “What did you think?” I asked Mom.

  “It’s fascinating—I think I read it in one sitting. I can see why they compare him to Pynchon.”

  “I’ve never read Pynchon,” I admitted. Mom gave me a look. “But I will!”

  “Everybody’s scared of Pynchon; I always thought he was great fun to read. But I think my favorite thing about the LaValle is what it has to say about second chances.”

  At the end of the book, a character named Ravi (aka Ronny) asks the narrator if people can really change, even people like him. Ronny is an odd fellow who can “wiggle his long nose in a way that looked both funny and sexual.” He’d been a gambler and a lout—his brother had thrown him out, and everyone now shunned him. What he’s seeking isn’t redemption but an invitation back into the world of people, “just the possibility of relief.”

 
The narrator in the book says that people can indeed change. LaValle writes, in the narrator’s voice, “To be an American is to be a believer. I don’t have much faith in institutions, but I still believe in people.”

  “That’s really so much of what I think about,” Mom said. “And that’s one of the things I loved about my work with the refugees. They’re just people like us who’ve lost everything and need another chance. The world is every bit as surprising as what happens in this novel—crazy things do happen when people least expect it. But it takes so little to help people, and people really do help each other, even people with very little themselves. And it’s not just about second chances. Most people deserve an endless number of chances.”

  “Not everyone?”

  “Of course, not everyone,” Mom said. “When I think back to Liberia and the horrific way Charles Taylor terrorized his country, and what he did to Sierra Leone, and the millions of lives he destroyed, and the cruelty and savagery—well, he’s pure evil. He will never deserve another chance. If you believe in good, you also believe in evil, pure evil.”

  We found ourselves talking quite a bit about Big Machine. It’s a fun book to discuss, but also the perfect book to read and dissect when you are all hopped up on Ritalin, as Mom was then. One of Mom’s greatest fears was that she wouldn’t be able to read in the weeks leading up to her death, that she’d be too sick or too tired or unable to concentrate. And she had many days when she was too sick to read—days that found her watching videos or old episodes of Law & Order or endless amounts of CNN and other political commentary. When she would say of a book like Big Machine that she’d read it in one sitting, it was both praise for the book and a way of letting all of us know that she was still herself, able to concentrate, stay awake, and be enthralled. As long as she could read books in one sitting, the end wasn’t quite in sight.