The End of Your Life Book Club

by Will Schwalbe

  “What are you doing here?” she said. She was more than angry—she was furious.

  “The trip wasn’t going well, so I decided to cut it short,” I said. “I have a lot to do here this week, and it was crazy to be out there having meetings that weren’t going to amount to anything.”

  We left it at that, but Mom continued to glower at me. I’d deviated from the plan—that was part of the anger. But the bulk of it, I’m convinced, was her anger at death. She wasn’t quite ready to go. She still had so many things to do. And my rushing back made it that much harder to believe that there was world enough and time. I spent the rest of the day at the apartment with Nina and Dad. Eventually Mom’s face softened, and she either stopped being mad at me or forgot that she was. We had dinner at the dining table, and Mom came in and sat with us. She’d put on one of her favorite blouses and a turquoise scarf and her pearls. She was still making plans—including for Nancy’s opening. But she recognized she might finally need to use a wheelchair. I volunteered to find a taxi or car service that could take one. Now she weighed less than ninety pounds, but to me she looked like herself, just a paler, smaller version. Frail but strong.

  I’d brought back the Reynolds Price book and put it on her shelf. That afternoon, when Nina had gone for a run, I’d sat next to Mom in her bedroom.

  “We haven’t heard anything about Patrick Swayze recently, have we?” she asked, referring to the actor who had been diagnosed with pancreatic cancer soon after she had and who’d done the television special she so admired.

  “No, we haven’t,” I said.

  “I guess he’s doing as badly as I am.”

  We then talked about the books. She’d finished the Alice Munro stories and loved them. “They kept me happy all weekend,” she said. There was one that she wanted me to read. Set in Munro’s native Canada, it was called “Free Radicals,” and it was about a woman named Nita, a big reader, who is dying of cancer. Munro describes the way Nita reads:

  She hadn’t been just a once-through reader either. Brothers Karamazov, Mill on the Floss, Wings of the Dove, Magic Mountain, over and over again. She would pick one up, thinking that she would just read that special bit—and find herself unable to stop until the whole thing was redigested. She read modern fiction too. Always fiction. She hated to hear the word escape used about fiction. She might have argued, not just playfully, that it was real life that was the escape. But this was too important to argue about.

  In the story, Nita finds herself in mortal danger, from something other than the cancer, and manages to save herself from the immediate threat with a story she makes up about a murder. It’s a darkly funny tale with a Somerset Maugham ending—the kind Mom and I loved. Books save Nita’s soul, and a story saves her life, or at least it does so temporarily.

  When I got home that night after dinner, I went right to sleep—but woke up in the middle of the night and read Too Much Happiness until dawn, skipping just the title story, or rather, saving it for later. Nita was nothing like Mom, other than the fact that they were both readers. But I could see why Mom loved that story the most. All readers have reading in common.

  The next day was Friday, September 11. I came back to spend more time with Mom. She was in bed most of the day. We all—Dad, Doug, Nina, and I—spent time with her. She had Daily Strength for Daily Needs on her bedside, with the same colorful handmade bookmark holding her place, the one she’d brought back from a refugee camp she’d visited years before.

  After some more hours of my trying to find a car service that could take a wheelchair, it became clear that a visit to Nancy’s studio to see the mural before it shipped to India was too ambitious. That night we again had a family dinner at the table, and Mom again joined us. She hadn’t eaten for days now and had trouble focusing on the conversation. But she was determined to sit with us and did. We told funny stories from our childhood. Mom occasionally grimaced in pain, even though she said she was just uncomfortable. But she also smiled at some of the stories, particularly those that involved Bob Chapman, the theater director she’d fallen in love with as a student at Harvard who’d become the sixth member of our family.

  That morning I’d posted the very first blog post I’d written myself. I’d shown it to Mom for her approval. It was she who suggested I add the sentences about Obama. It read:

  Starting last Monday, Mom has been feeling much worse. Phone calls are difficult—so it’s far better to send her emails than to call. She reads all her emails, but may not be able to answer promptly as she has been spending more time in bed, and has had, for the last few days, a much more limited amount of energy. Her spirits remain strong.

  Also, Nina is here from Geneva—and that’s great for all of us.

  Mom watched Obama’s speech and was encouraged by it. She thinks he did an excellent job on the speech, and that it will help get us some kind of health reform this fall, which the country desperately needs.

  We all hope everyone had a good Labor Day—and will keep you posted on any news.

  Saturday arrived, and Mom was much worse. She spent the whole day in bed, drifting in and out of consciousness. We’d been in touch with Dr. Kathy Foley (Nina’s palliative care guru friend) and the hospice people a great deal over the last few days, and they now sent a nurse called Gabriel to walk us again through what we would need to know about delivering pain relief to Mom as she needed it. A vigil had begun, with all of us taking turns sitting an hour at a time with Mom, talking when she was awake, holding her hand when she wasn’t. As we’d been told to expect, her breathing was becoming more and more labored.

  That afternoon I updated the blog. I did not read it to Mom:

  Mom’s illness is progressing quickly. She is resting quietly and her pain is being controlled. She is not taking any phone calls or visitors and is not checking her email. We will update the blog every day and thank everyone for your kind thoughts.

  It’s difficult for us, too, to answer the phone or reply to emails, so please do continue to check the blog for updates.

  Again, our thanks to everyone for all your support.

  By evening, Mom’s pain seemed to increase, so we gave her some morphine. She drifted in and out of consciousness. One of the phrases she kept uttering was “It is what it is.” But everyone, including David and Nancy, had one more good conversation with her. With Doug, she talked about the service she wanted. He also asked her if she had any regrets. She said she did have one: She’d always wanted a castle in Scotland. I don’t think this was delirium. I think she really did. Mom’s minister came by. Doug sat with him and Mom, and they all recited the Lord’s Prayer. She’d been very agitated when her minister arrived—she knew what that meant. But after his visit, she did seem, somehow, changed. Lighter, perhaps—as though partially here and already somewhere else.

  Then things rapidly deteriorated.

  I’d seen so many movies where characters sit by beds as their loved ones die. They give speeches, hold hands, and say, “It’s okay—you can let go.” What none of those books and movies conveys is how tedious it is. My sister and brother both felt the same. We would hold Mom’s hand, give her sips of water from a cup, tell her how much we loved her, listen to her labored breathing to try to hear if it was getting more so, and five minutes would have gone by, with fifty-five more to go before another sibling would come in to take over.

  Soon there was a hospice nurse to sit with us as much as we needed, and to help us keep Mom clean and comfortable. I would glance over, and the nurse would be adjusting Mom’s pillow or dabbing the corners of her eyes or giving her gentle sips of water. It was an extraordinary sight—a stranger tending to our mother with infinite care. David and I ran out to get a little toothbrush with toothpaste preloaded on it, so we could keep her teeth clean. It was something to do when it wasn’t our turn to sit with Mom. The alternative was to pace back and forth in the living room.

  One unintentionally cruel thing was the phone. There was a local election coming up, and Mom
and Dad’s number was on every autodial of every politician. All our friends and family were respecting our need for quiet—but the phone kept ringing and ringing, and we would pick it up, on the chance that it was a call from her minister or the nursing service, only to have a recording blared at us trying to convince us to vote for one candidate or another.

  AT ONE POINT we all found ourselves out on the terrace—it was one of the brief moments when just the nurse was with her. It was chilly—a true New York autumn evening. We were all exhausted and bracing ourselves for what was to come. And my brother said something that made an immense difference to me. It was an echo of what Mom had said all along—how lucky she was.

  “You know,” Doug said, “think of it as a deal. If someone said to Mom, ‘You can die now, with three healthy children, your husband of almost fifty years alive and well, and five grandchildren whom you love and who love you, all well, all happy’—well, I think Mom would have thought that wasn’t a bad deal.”

  ON SUNDAY, MOM did not have many moments of what seemed like consciousness. She did sit up and smile when David walked into the room. And she did seem to respond to our questions and expressions of love. We were with her constantly. I was wearing for the first time the cream-colored cotton sweater she’d given me for my birthday that year. I think she recognized it. When her hand brushed against it as I was sitting beside her, she smiled. Of course, she was right—it’s far and away the nicest and best-fitting sweater I have. It’s more than that. It’s beautiful.

  I was supposed to be at the bat mitzvah of my youngest god-child that weekend and was going to read a Mary Oliver poem as part of the service. But a friend would be reading it in my stead. Since Mom loved Mary Oliver’s poetry, I decided to read it to her. It’s from a 2004 collection called Why I Wake Early.

  WHERE DOES THE TEMPLE BEGIN, WHERE DOES IT END?

  There are things you can’t reach. But

  you can reach out to them, and all day long.

  The wind, the bird flying away. The idea of God.

  And it can keep you as busy as anything else, and happier.

  The snake slides away; the fish jumps, like a little lily,

  out of the water and back in; the goldfinches sing from the unreachable top of the tree.

  I look; morning to night I am never done with looking.

  Looking I mean not just standing around, but standing around as though with your arms open.

  And thinking: maybe something will come, some shining coil of wind,

  or a few leaves from any old tree—they are all in this too.

  And now I will tell you the truth.

  Everything in the world

  comes.

  At least, closer.

  And, cordially.

  Like the nibbling, tinsel-eyed fish; the unlooping snake.

  Like goldfinches, little dolls of gold

  fluttering around the corner of the sky

  of God, the blue air.

  I felt a bit self-conscious reading it—like someone with headphones on who suddenly realizes he’s singing in the subway. But I like to think that Mom’s eyes fluttered when she heard me say the word God.

  When I was finished, I looked around at Mom and Dad’s bedroom—and at Mom, resting relatively peacefully, but with that rasping breath that means there isn’t much time left. She was surrounded by books—a wall of bookshelves, books on her night table, a book beside her. Here were Stegner and Highsmith, Mann and Larsson, Banks and Barbery, Strout and Némirovsky, the Book of Common Prayer and the Bible. The spines were of all colors, and there were paperbacks and hardcovers, and books that had lost their dust jackets and ones that never had them.

  They were Mom’s companions and teachers. They had shown her the way. And she was able to look at them as she readied herself for the life everlasting that she knew awaited her. What comfort could be gained from staring at my lifeless e-reader?

  I also noted a special pile of books. They were to be the next ones for our book club. They were in their own small stack, separate from the others.

  MY SISTER TOOK charge, which was a huge relief. She and Mom had always had a bond beyond mother-daughter, something forged when they worked together in the camp in Thailand. My brother read the Bible to Mom, and both he and my sister updated Mom on all the goings-on with her grandchildren. My father spent a lot of time alone with Mom, recounting, as he said, what a grand adventure they’d had together, and how he never could have dreamed of the life that he’d had with her. By this time, she was sleeping all the time, mostly peacefully.

  In the hours I spent beside Mom, I talked with her about the books we’d read together, about the authors and characters, about favorite passages. I promised to share them with others. I told her that I loved her.

  Mom died at three fifteen in the morning on September 14. The minister had told us that she would likely die in the middle of the night. I’d left at two A.M. to go home and shower. Nina, who was with her when she breathed her last, called me, and I raced back, as did my brother, who was a bit worse for wear, having taken an Ambien. But he was there, as he always has been.

  We each spent some time with Mom’s body. And in the morning, my sister and I waited for them to remove it. Doug and Dad didn’t want to be around for that, so they went out to a diner to get something to eat. Nina and I opened the window to let out Mom’s spirit. And just then I noticed a shaft of light touch a tiny picture of the Buddha that my sister-in-law Nancy had painted and that Mom had hung in a place where she could see the light hit it as she lay in bed. It’s a beautiful turquoise Buddha—and it glowed.

  Next to Mom’s bed was Daily Strength for Daily Needs, still with the bookmark in it marking the entry for Friday, September 11. I looked in the book first at the Bible passage for that day. It was the shortest entry in the whole book, just three simple words:

  Thy Kingdom Come.

  Then I read the rest of the page. At the bottom was a quote from John Ruskin:

  If you do not wish for His kingdom, don’t pray for it. But if you do, you must do more than pray for it; you must work for it.

  I believe those were the last words Mom ever read.

  Epilogue

  For the longest time after Mom’s death, I would suddenly be seized with paralyzing guilt over something I’d neglected to tell her during one of our book club meetings: Why didn’t I say this thing or that thing? I’d had the perfect opportunity when discussing this book or that. Eventually I came to realize that the greatest gift of our book club was that it gave me time and opportunity to ask her things, not tell her things.

  Of course the book club also gave us a welter of great books to read—books to savor and ponder, to enjoy, and to help Mom on her journey toward death and me on mine to life without her.

  Since Mom’s death, I’ve heard from all sorts of people who also talked about books with Mom. There are dozens of people whose lives were touched by and touched Mom’s—like Brother Brian, who runs the amazing De La Salle Academy in Manhattan, one of Mom’s favorite schools; or my “siblings” Ly Kham and John Kermue and Momoh and Dice and Winnie, all friends Mom made when they were refugees—who have mentioned to me conversations they had with her about books or an important book that she insisted they read.

  I’ve also talked with many people who have shared with me stories about times they spent reading or talking about books with someone they loved who was dying: a father, a sibling, a child, a spouse.

  The memorial service for Mom was held in her church, Madison Avenue Presbyterian, during a blizzard in February. One of the artists Dad represents, Emma Kirkby, sang Mozart’s Laudate Dominum. My siblings and I spoke, and so did Nico, representing the next generation. Mom’s brother recounted childhood stories about his big sister, including how she’d told him he should really read more books so that he’d have something to talk about with adults—and with girls.

  The former head of the IRC spoke of Mom’s work with refugees. Harvard’s dean of admissions
talked of their early days working together, combining Harvard’s and Radcliffe’s offices. A friend from those days spoke of Mom as role model, friend, and mentor. The president of Kingsborough Community College, the friend who was one of the few who could get Mom to shop, told of their time on boards together, of their travels, and all she’d learned from Mom about life and death.

  Walter Kaiser, the Harvard scholar and lifelong friend who’d called Mom every morning, recounted a story about a college trip to Rome with Mom, and how she would smile at absolutely everyone, including young men, and how this frequently led to misunderstanding. Back then he’d said to her, remonstrating: “Mary Anne, you’ve just got to stop smiling at strangers!” Now, at her memorial service, he said, “Who could have foreseen that she would spend the rest of her life doing exactly that—smiling at strangers?”

  I OFTEN THINK about the things Mom taught me. Make your bed, every morning—it doesn’t matter if you feel like it, just do it. Write thank-you notes immediately. Unpack your suitcase, even if you’re only somewhere for the night. If you aren’t ten minutes early, you’re late. Be cheerful and listen to people, even if you don’t feel like it. Tell your spouse (children, grandchildren, parents) that you love them every day. Use shelf liner in bureaus. Keep a collection of presents on hand (Mom kept them in a “present drawer”), so that you’ll always have something to give people. Celebrate occasions. Be kind.

  Even though nearly two years have passed since her death, I’m occasionally struck by the desire to call Mom and tell her something—usually about a book I’m reading that I know she’d love. Even though she’s not here, I tell her about it anyway. Just as I told her about the three million dollars the U.S. government has committed to building the library in Afghanistan. By the time this book is published, the Kabul library will be finished. I like to believe that she knows that.