The End of His Life Book Club
What I learned in the Five Years I Spent Reading to my Neighbor who had ALS
The End of His Life Book Club
By Debby Waldman
Ours was a relationship born of mutual self-interest: I was looking for an excuse to reread Fates and Furies and Bill, who could no longer hold a book, wanted to hear it.
I made this fortuitous discovery in 2015, at the annual Grey Cup party that Bill and his wife, Joan, hosted. The Grey Cup is the Canadian Football League’s version of the SuperBowl. I’m not a big football fan, which is why I was discussing books with Joan. Bill loved all sports. Growing up he played football and soccer, no doubt getting knocked in the head more than once. That’s likely what contributed to his being diagnosed with ALS when he was 54.
By the time I began reading to him, the day after the Grey Cup, he was 60, five years older than I. He’d beaten the odds for the disease, which claims most of its victims within five years of diagnosis after rendering them incapable of moving, eating, speaking, and breathing.
Bill could still sit up in a motorized wheelchair, and eat, drink, and talk. ALS had forced him into early retirement from his job as the chief engineer at the major research hospital in our city. Now he spent most of his days listening to podcasts, watching TV, visiting with friends who came by regularly, managing the family finances, and helping his afternoon caregiver, Cathyann, with math and science homework.
Nearly every weekday after I finished work, I’d walk from my house to Bill’s condo. How long I stayed depended on his energy level, my evening commitments, and how invested we were in whatever I was reading.
It took more than a month to get through Fates and Furies. By then, President Obama had named it his favorite book of 2015, which made me feel even more virtuous than the fact that I was jogging to and from the condo (it wasn’t even a half mile round trip, but it was exercise).
Bill really enjoyed the novel. He didn’t mind when I stumbled over author Lauren Groff’s five-dollar words, nor did he seem uncomfortable when I came upon an expletive or a sex scene. Or maybe he was and just didn’t show it. I hadn’t intended to read him a second book, hadn’t intended for this to become a routine. But as we reached the end, I realized how much I enjoyed our afternoons together.
I had never belonged to a book group. For years I reviewed books for Publishers Weekly, People, and my local newspaper, The Edmonton Journal. I didn’t need to discuss books because I spent so much time writing about them. But not long before Bill and I formed what I came to think as the End of His Life Book Club, that work had dried up. I had become a solitary reader. My afternoons with Bill reminded me how much I missed sharing my thoughts about what I was reading. It was also nice to spend time with someone who appreciated my efforts: as a self-employed writer and editor, I rarely interacted with anyone during my working hours, and most of the responses I received from literary gatekeepers were polite nos.
Also, as odd as it sounds, reading to Bill made me feel closer to my mother, who lived in a nursing home 1500 miles away in Milwaukee. She’d been diagnosed 12 years earlier with another neurodegenerative disease, Parkinson’s. Increasingly she was confused and silent. Once a passionate reader, she now relied on the books on tape that my sister, a Milwaukee librarian, provided for her. Had we lived in the same city, it was Mom I would have been reading to.
The second book I proposed was Julie Schumacher’s Dear Committee Members, a novel told in the form of recommendation letters from a vain and disillusioned professor of English and creative writing at a third-rate Midwestern college. It’s one of the funniest books I’ve ever read, and I figured Bill could use a laugh.
It took longer to start than I’d planned, though, because I was judging a children’s literature competition, which meant I had to get through 40 kids’ books in two months. In the interest of efficiency, instead of starting into Dear Committee Members right away, I read Bill a handful of contenders: two middle-grade novels about an elementary school hockey team overcoming obstacles in real life and on the ice, and a cliché-ridden drama about an aspiring singer whose career is nearly ruined by an evil producer. (We both preferred the hockey books.)
When the competition ended, I felt as if I’d been let out of literary prison. I had a stack of books I’d been itching to tackle for months. I had started reading Dear Committee Members with Bill, which had the desired effect of making him laugh. At home, for my own bedtime reading, I contemplated something darker: Paul Kalanithi’s When Breath Becomes Air, a memoir by a 37-year-old superstar neurosurgery resident who died way too young and in a way that seemed entirely unfair. I picked it up tentatively, as if it were contaminated. But I was pulled in immediately by Kalanithi’s descriptions about growing up in a tiny Arizona town where he fell in love with literature and became fascinated with the workings of the brain.
I hadn’t settled on a book to read to Bill after Dear Committee Members. I wanted to find something that would make both of us laugh that much, but I was stumped. The deeper I got into When Breath Becomes Air, the more I was sure it was the right choice. I broached it tentatively. Bill said yes.
Our across-the-street neighbor was incredulous. “You’re reading a book to Bill about a guy who is dying?”
I shrugged. “He was interested,” I said.
He wasn’t interested in everything. Another neighbor, Ernie, also read to Bill. One afternoon when I showed up with When Breath Becomes Air, Ernie was standing in the living room by Bill’s wheelchair. He appeared bereft.
“He doesn’t want to hear All My Puny Sorrows,” Ernie said, pointing at the Miriam Toews novel, an autobiographical story about a single mother unsuccessfully trying to convince her beloved sister not to follow in their father’s footsteps and kill herself.
“I don’t want to read All My Puny Sorrows,” Bill echoed, speaking through the mask over his mouth, which was connected to the bi-pap machine on which he was becoming increasingly dependent to force air into his lungs.
“It’s pretty funny for a book about suicide,” I said, trying to be helpful.
“No,” Bill said, ever gracious, his eyes smiling.
“I have a dark Irish book,” Ernie said. “But maybe it’s too dark.”
Bill agreed to have a listen, and Ernie left, much more upbeat than he’d been when I arrived.
I settled myself on the couch and opened When Breath Becomes Air. We’d left off where Kalanithi was musing about meaningful lives and when it was time to determine whether life was worth living.
As someone who has lost many family members to a variety of illnesses, I’ve been exposed to and in awe of death for decades. But it was rare to find anyone with whom I could have a frank discussion about the subject. Bill was one of those people.
“Some people would look at you, given what you’re going through, and say your life isn’t worth living,” I said to him as I balanced the Kalanithi book on my lap. “You might have said that, when you were diagnosed five years ago.”
“Six years and a bit,” he corrected me. “It was a lot harder for me then.”
“Because you didn’t know what to expect?” I asked.
He agreed. It was easier now, he acknowledged; not quite as frightening.
“So this is about as bad as it’s going to get?” I asked, hopeful, naïve.
“Oh no,” he assured me. “It’s going to get worse.”
∞ ∞ ∞
We were nearly halfway through When Breath Becomes Air when I received the copy of Viktor Frankl’s Man’s Search For Meaning that I’d ordered after listening to a radio documentary about it. I was thinking it would be a good choice to read next, but it turned out to be very heavy going for such a slender book. I left it unfinished on my night table. I didn’t bother telling Bill about it. Instead, I asked if there was anything he wanted to read.
“We’re trying to get one from the library, but it’s taking a long time,” he said. “Man’s Search for Meaning.”
He’d listened to the same documentary. Of course he had.
Man’s Search For Meaning is quite possibly the single most depressing book I have ever read. By the third day we were only up to page 22 and I could barely continue. I couldn’t wait to get past the first half to what I had been led to believe was the good (lighter?) stuff. I think even Bill was getting depressed, though it was hard to tell because he tended to be a pretty positive person.
After a couple of weeks we reached the section in which Frankl described concentration camp inmates who gave up on life because they had no idea how long the war would go on, how long it would be before they were free. Those people, Frankl wrote, were basically doomed because they had no vision of a future.
It was another one of those times when I was struck by what I was doing: reading a book about having no future to look forward to, to a man whose future most people would say was not worth looking forward to.
It was around that time that the Medical Assistance in Dying movement was getting a lot of attention in the media. “You know,” Bill said. “When they’re looking for evidence to support assisted dying, people always bring up patients with ALS, like it’s the worst thing to have.”
“It’s not?” I asked.
“I think the patients are afraid,” he said. “They don’t want to be a burden, and they think they are.”
Bill didn’t see himself that way. As far as I could tell, nobody else did, either. “I have people who take care of me,” he said. “I have my family around me. I have a nice place to live. I have friends who come visit me.”
I pointed out the obvious: he’d had a good job with a pension, his wife was a physician, they were smart about their money, and we live in a country with publicly funded health care. Bill countered by telling me that the ALS Society has funding to help the less fortunate, which wasn’t always the case. I conceded and continued reading.
In the section about giving up on the future, Frankl quoted Otto Von Bismarck: “Life is like being at the dentist. You always think the worst is still to come, and yet it is over already.”
For Bill, it seemed to me, the worst actually was yet to come. Given how he’d responded the last time I’d posed that issue, I expected him to agree. Instead, he said, “Maybe not.”
How I wished that would have been the case. But there’s only one outcome for ALS patients. Over the next four years, Bill gradually lost more and more function. He could no longer eat, his voice grew quiet, he needed a complicated series of hoists and pullies to get out of bed. He couldn’t turn his head. On afternoons when I read in the living room, Cathyann had to turn Bill’s chair away from the TV so he could see me.
About three years into our relationship, he lost his ability to speak. He relied on a Megabee, an electronic spelling board that Joan’s cousins had purchased for him. It made communication time-consuming, but possible. For yes or no, he raised or lowered his eyebrows. When the board broke, Joan had to send it off for repairs. While it was in the shop, everyone had to play guessing games to figure out what it was that Bill needed.
Around this time it wasn’t unusual for our reading sessions to be interrupted when Bill had to have medical attention. I’d wait in the living room while the caregivers huddled around his bed, cleaning out his airways. The door to the bedroom was closed, but the condo walls were thin. It always sounded to me as if someone was being murdered, which, in a way, was true.
And yet I could not imagine ending our relationship, which had become about more than books. When my mother died, Bill provided solace. When my son spent three months in a psychiatric hospital starting two weeks after Mom died, my time with Bill became an escape hatch from the grief and fear that were taking over my life. When my daughter and I clashed, he invariably had useful advice. And when I became a great-aunt for the second time, he shared in my excitement.
By 2019, I visited less frequently. I was busier with work or traveling, sometimes with my husband, sometimes to see my mother, who was growing more frail and died in 2018. When I was home, often Bill was too tired to listen to me read. What turned out to be the last book we read was “Fear,” by Bob Woodward. I was hating it. I’d bought it for two dollars at a library sale in Milwaukee thinking it would be interesting, but by the time we got around to reading it, a year after it was published, the things that Donald Trump was doing in real time seemed far more egregious than what he had done early in his presidency.
I took breaks from “Fear” by reading Bill essays I was working on. I read him two drafts of my memoir about dealing with my father’s untimely death. True, Bill was literally a captive audience, but as he’d made clear four years earlier with Ernie, if he didn’t want to hear something, he wouldn’t. He provided feedback through the Megabee.
In February, right before the pandemic hit, Bill was hospitalized for a problem with his eyes. He came home around the time Covid was starting to take hold in our province. I hadn’t visited him in the hospital, and now I could no longer see him at home. I read to him once, on FaceTime. I thought I’d keep it up, but I didn’t. Going to the condo in the afternoon had become an escape, a place where my frustration with not getting anywhere with my writing melted away in the presence of a dying man who embraced life. Reading over the computer from the desk where I worked every day wasn’t the same.
The last time I saw Bill was late May. I wanted to read him my newest manuscript, a picture book biography about Trudy Elion, a Nobel Prize-winning biochemist who had paved the way for anti-viral therapy. Because I still couldn’t go inside, I sat on a folding chair that Joan handed to me over the balcony railing. I planted it on the grass. A caregiver wheeled Bill to the doorway. Every few minutes I had to stop reading to move the chair, which kept sinking into the lawn. Bill liked the story. Maybe he could identify with Trudy, a woman who overcame one setback after another but refused to give up.
I wish I could say, “Bill never gave up, either,” but that would be facile and untrue. A few days before the summer solstice, surrounded by his family, Bill took his last breath. I’d known it was coming: Joan had told me a couple of weeks earlier that he was no longer able to communicate.
Nine days after Bill died, Joan turned up at my door with a copy of “The Book of Gutsy Women,” by Hillary Rodham Clinton and Chelsea Clinton. I’d seen it the last time I’d read to Bill. After listening to the draft of my Trudy Elion manuscript, he’d used the Megabee to ask Joan to show it to me while I was sitting on my folding chair on the grass.
“I’ll loan it to you when we’re done reading it,” she’d said.
Now, standing at the doorway, I thanked her and promised to return it when I was finished.
“No,” she said. “Keep it. It’s for you. Bill wanted you to have it.”
After she left, I opened it. On the inside cover, she had written, To Debbie, a very special person who befriended Bill and brought him companionship, joy, and literary treats for many years.”
I read the inscription over and over, ran my hands over the words, stared until they blurred. Even though I hadn’t read to Bill regularly in more than a year, the idea that I would never again have the opportunity hit me hard. What had started out as a kind of selfish impulse nearly five years earlier had grown into something that was more rewarding than I could have imagined. Our relationship, built over books, was the real literary treat.
This showed up in my feed and I love it for the book recommendations and the picture of this unlikely friendship. What a treasure to be able to capture and share the beauty of these neighborly affections that make our lives so rich. It inspires me to right about my “across-the-street neighbor” who needed our care before passing away during Covid. My husband and I became a nurses, of a sort. It all started with a neighbor taking our trash bin to the curb every week.
Thanks for this Debby. Joan sent me the link. I'm the minister at Joan and Bill's church. Brings tears as I remember Bill, his life, his death - he is an incredible soul - and visits with him before and after his diagnosis with ALS. I'd like to share it with the congregation if it's ok with you and Joan.
Jim Lochhead