What to Read (and How) When You’re Dying

All my life, I’ve enjoyed reading. As a kid, after I learned to read to myself, I would close the door to my room, and lie on my side on the bed, elbow propping up my head, lost in a book for hours. Though reading was encouraged by my family, the extreme privacy of the reading experience felt somehow illicit. The books I read back then and the experience of reading them remain vivid. The River, The Trouble With Jenny’s Ear, A Secret Garden, Swallows and Amazons, A Wrinkle in Time, Melindy’s Medal, Gone With the Wind. These are some of the titles, in no particular order, that pop to mind for having absorbed me. I read to be immersed, to flee the stresses of school and the expectations of family, to carve out time for myself and my own thoughts. I particularly loved reading about girls. Girls who were brave or became brave. All girls — maybe all people — need models of bravery.

When I became a writer, reading took on new purposes. I still read for entertainment and escape, but other reasons for reading entered too. I read to see how other writers employ certain techniques of craft. I read to stay on top of books the literary community was talking about. I read the books my book group was reading, and when I began teaching, I read the books I’d decided to teach. I sometimes found myself reading books I wasn’t fond of, but I finished them anyway. Sometimes reading felt like an obligation more than a pleasure, and I almost always felt I couldn’t stay on top of the reading I should be doing. I often yearned for the immersive, devil-may-care reading I’d done as a child, something which had begun to feel more elusive.

When the pandemic hit, many people I knew, as well as people in the media, spoke about how their reading habits changed. Some said they couldn’t concentrate on reading at all. Others were reading a lot but different content, lighter fare perhaps. Still others talked of taking on reading projects, such as reading all of Tolstoy or Proust. My reading habits remained more or less the same. I still felt guilty about not reading enough (admiring all the reviewers and librarians I know who devour a book a day), and bad about not having read certain books everyone was talking about. I still felt like a student struggling to keep up with her assignments. How could I call myself a writer if I hadn’t read everything?

Then, a year into the pandemic, I was diagnosed with ALS. Suddenly, tiring more easily and knowing my time on Earth was limited, every expenditure of time came under scrutiny. The pandemic restricted socializing, but I became even more rigorous about limiting social time. Talking took a lot of effort, and when I lost my voice entirely and began typing my conversation on a text-to-voice computer, that took even more effort. I prioritized the solitary activities of writing and reading (as I’ve always done).

But what does a “dying person” read? It quickly became apparent to me that I could let go of the idea that I should read anything. Will I be refused admission to heaven — if such a place exists — because I haven’t read War and Peace? There are so many works of the old and new canons I wish I had read. So much poetry I wish I was familiar with. So many engaging works of nonfiction I know I would love. Let that go, Cai. Another long-time habit of mine has been intensified by my diagnosis: the habit of dipping into many books at a time, shuttling from one to another and reading short sections, either looking for traction or simply content to savor a small bit. If I’m not engaged by a book after reading fifty pages or so, I feel no compunction about setting it aside. (My first editor once said to me: I never read past an ugly first sentence. That was a comment that certainly gave me pause!) Beside my bed — which has become my office that my husband and I refer to as my “cockpit” — there is a growing stack of books, spine out, which I’ve read some of and set aside for one reason or another. I’m waiting for the summons to finish them. I was pleased to read in a recent New York Times interview with the author Yiyun Li that she, too, often shuttles from book to book.

It’s hard to analyze exactly why a certain book electrifies me and another one leaves me cold. I have stopped caring about why my tastes don’t always align with the world at large, or even with my friends or former book group. The entire publishing industry is mystified about what grabs a reader, and clearly it is idiosyncratic, different for everyone. A chemistry as mysterious as falling in love. As a writer I understand that and do not expect everyone to respond to my work.

I’m choosing books more carefully now. Not the books that the publicity machine is pushing on us all, but books from writers who seem wise, empathetic, humble; not simply lovers of words (though deploying words beautifully is also important in my choices). I am quite certain that the books I love are written by people I would also love. And I’ve had this borne out in quite a few instances when I’ve had the occasion to meet writers I’ve read. Alice McDermott, who I studied with at Sewanee Writers Conference, is truly an old soul, a wise and empathetic human being whose short novels are elegiac and transporting. She was exactly the same way as a workshop leader, calm and clear and friendly and soulful. Elizabeth Strout who I chatted with after one of the Portland Literary Arts Lecture, is similarly down-to-earth and humble, also radiating a soulful quality. These are women whose fiction has engaged and even transported me, and having met them, I understand why.

Memoirs are of more interest to me these days, as they are a way to “meet” the author via the page, sinking me directly into another person’s way of thinking unmediated by fictional invention. Many people have given me, or recommended, memoirs about navigating disease and death, and while some of these books have engaged me, I have also developed some wariness. I began reading a book I’ve been meaning to read for a long time, On Being Mortal by Atul Gawande. A third of the way through the reading, I misplaced the book. By the time it reappeared in my husband’s bag — he had volunteered to carry it for me — I couldn’t reengage with it. It joined the pile beside my bed. Several ALS memoirs have come into my hands. With some of them, written by non-writers, I could not get past the first couple of pages (sorry to be a snob!). One turned out to be reasonably well-written, and it engaged me for a while, but I have stalled with that one too. I think I’m resistant to absorbing another person’s narrative of dying while I am trying to comprehend my own experience. I had a completely different experience with the beautiful memoir, When Breath Becomes Air, written by the rising-star physician Paul Kalanithi who documented his journey to death from cancer. I read that at a time in my life when death was theoretical, an experience I felt was far in the future.

One of my two big-hearted sisters gave me a book called Walking Each Other Home, by Ram Das and Mirabai Bush. The book is written as a conversation between the two authors, and it lends itself to being read a few pages at a time. I am relishing it, as my sister said was her experience. It has made me realize that because I can’t converse (without technology) I want my reading experiences to feel like conversation, that I’m getting to know someone on the page who feels like a friend. Maybe this is what I’ve always sought in a book, the feeling that a writer’s words are catalyzing new thoughts in me that entwine with the writer’s thoughts in the dance of reading. A silent call-and-response.

Poetry has summoned me too. Its intimacy seems to demand this call-and-response style of reading. I’m reaching into my bookshelves for the work I’ve always loved, and asking my niece, a poet, to recommend some of the poets she loves whose work I haven’t read. I read slowly, savoring the words, taking in a few lines, then pausing to think of their meaning, or multiple meanings, like the religious practice of Lectio Divina, without feeling a story’s propulsive pull urging me to find out what happens next. Anticipating a day when my hands will be too weak to hold a book or turn its pages, I look forward to listening to poetry read by actors with sonorous voices. Or my niece reading her poetry to me.

So, I’m reading less, but I’m finding more satisfaction in what I read. I wish I had had this approach to reading earlier in my life. Letting go of those dictatorial shoulds. Reading as a way of listening to the voice of another human being behind the words, so it feels as if I’m in the presence of that other person, speaking — or perhaps dancing — with them.