On Writing (and Rewriting) Illness

April 27, 2023 | 6 min read

Two distinct voices warred as I wrote and rewrote. My friend’s Kate’s: “You have to do this. It will be so helpful to people going through what you went through.” And my friend Bob’s: “I never want to read another cancer memoir!”

It was easier to focus on Kate’s words, but Bob is the editor of a magazine I write for, and we’re always in touch about what we’re reading and writing. I care what he thinks about my work—do I care too much?—and took his edict as a challenge. Could I write a memoir that even no-cancer Bob wants to read? It’s not that he doesn’t care about people with cancer, only that the story by now is a predictable one, maybe even a cliché: terrifying diagnosis, ghastly treatments, epiphanies about What Really Matters and Living One Day at a Time. I didn’t disagree with him, but there I was with this mountain of material. It had not fallen into my lap but burrowed its way into my armpit, and it was huge.

This is a version of what I told the psychiatrist I saw when first diagnosed with lymphoma in October 2017. I was sitting in his office, dizzy with depression.

“I can’t even write a book about it,” I complained, listing everything that had gone wrong since I’d found the lump five months before.

“Why’s that?”

“Because no one wants to read another cancer memoir.” I knew this long before Bob had made his declaration.

“But no one has written your story.”

“I wouldn’t be so sure.”

I wasn’t there for literary advice or even talk therapy. I needed a prescription for antidepressants, which I don’t usually take, but as I faced my possible demise, I was slipping into the squishy ground of implacable gloom. This was not where I usually dwelled, and I was happy to consider chemical intervention. After all, I was about to be slammed with months of chemo, beginning with six days in the hospital so that it could be administered around the clock. Whether the other treatments would be in the hospital was still up in the air. The doctor had never seen anything like my wonky gene, which meant that even though the type of lymphoma I had was “treatable,” even “curable,” the mutated gene made that less likely. But how much less? Even the legendary doctor I consulted did not know.

The question of whether I’d write about my situation was not the most pressing matter on my calendar. Yet if a life interruption this dramatic doesn’t rise to the level of writerly material, what does?

But Bob was right—we’d read this story before. How could I make it fresh, original, and literary enough to hold the attention of readers who demanded textured prose and new ideas, not just accounts of what happened and when? But Kate was right too. She didn’t mean that I should write a self-help book. She meant that the right kind of storytelling is a comfort. She meant that we need our hands held when going through traumas, even ones with no neat beginnings or endings. I was a writer. I wrote about What I Knew and What I Learned. And now I had this other burden: to tell the story in a way that might help others going through it.

During the months of treatment, I took notes on the backs of botanical postcards. A steady stream of emails I wrote and received became a sort of diary. But when I sat down to Tell the Story rather than scribble stray thoughts, it took months to figure out where to begin. With the night I found the lump or the dream I had, the night before going to the hospital, about sleeping with President Obama? (I was still desirable—wasn’t I?—even though that was about to end.) Or with the weekend my husband and I spent with new friends at their country house while I waited for the results of the biopsy and vowed not to tell our hosts, until the husband blurted out: “Liz, you look sick. Is everything all right?” I did not have a terminal diagnosis, but my wonky gene made the outcome uncertain. How could I write an account that might change without warning? And how long would I have to wait until I learned if the treatment had worked? Six months after it ended, the doctor told me that if the cancer was going to recur, it would likely be within these first two years. I counted down the months, keeping the count and the story largely to myself.

The first draft was just the facts, ma’am—250 pages of them. This happened, then that happened. I thought it was good enough to send to three readers, including Bob. Poor Bob, who never wanted to read another cancer memoir was now, through no fault of his own, reading mine. When he was done, he joined the other two readers, who said politely: “Uh, not quite ready for prime time.” True to form, Bob was more explicit: “Only your friends will want to read this.” To which I added: “And maybe not even them.” Each reader offered small suggestions for what I might do to improve it, but nothing global, nothing dramatic enough to grab onto. No one said, for instance: “It might really work if you tell the story backwards.” That would have been an easy fix.

Days later, it seemed, the pandemic struck, and my problems and my memoir no longer amounted to a hill of beans. “Put your manuscript in a drawer for a few months,” said my friend Honor, who has written three memoirs. A few months turned into many months, and late the summer of 2020, I took the manuscript out of the proverbial drawer and began chipping away. Sharpening the prose, adding color here and there. I worked diligently, line by line, scene by scene, trying my best to follow the Beatles’ command, to take a sad song and make it better. I did the work, but I was slogging, not soaring.

The turning point came many months later, when I called a notably blunt friend about another matter and ended up telling him about the book. “What’s the title?” he said. When I braved repeating it, I could practically hear him shaking his head. “No, that won’t work. How long are your chapters?” When I told him, another slam: “That won’t work either. If this is a book for people with cancer, they don’t want to read long. I’m writing a book now with no chapter longer than 900 words. And some much shorter.”

There it was—the magic bullet that rarely comes to a process this complicated. Within minutes of the call, my brain was exploding. What if I reduced every chapter to an appetizer portion? As I began cutting, something else happened. I found myself writing titles to each of these mini-chapters that were loud and funny and not at all in the mood of everything I had been writing for two years. “Not Everything Scares the Shit Out of Me,” and “Maybe It Was the Krazy Glue” and “What Brings You Here Today?” and “Where Is My Husband?”

The subject was no less serious and my fears no less vivid, but the flashy headlines and brief, explosive chapters accentuated my shock, my rage, and maybe even my helplessness: all I had were my words and my ability to do something bold with them. My body was out of compliance, but, goddammit, I wasn’t going to go down meekly.

I rewrote the entire manuscript in about two months, having fun with it and feeling it change shape, texture, and velocity with every new title and explosive little chapter. In this serendipitous new assignment, I had discovered my voice or a voice in which to tell the story that had fallen flat in previous incarnations.

Now I was not just transcribing what had happened but rewriting my illness. And in rewriting it, I could isolate serious issues that I’d touched on in the manuscript but hadn’t known quite what to do with: women and fear, women and hypochondria, my connection to Nora Ephron’s silence in not telling even her closest friends that she was sick, the strange ways that doctors speak and don’t speak about serious illness, and the ways we do and don’t ask questions of these doctors because of our own crippling fears.

Rewriting IllnessIn rewriting, I could be self-mocking about the assortment of wheat grass juice, apple cider vinegar, and jumping jacks I relied on to reduce my swollen lymph nodes. I could be probing about my hypochondriacal fears, about my New York moxie vanishing in the face of illness. I could write about my resistance to my sister teaching me Tibetan chants to help with my anxiety, and how I relied on those chants whenever I was jabbed with needles large enough for elephants.

As I counted down the months until I’d know if the cancer would recur, at my computer, I got in touch with another version of myself—the storyteller, the journalist, the investigator of complicated feelings. I was not the powerless patient I had been when going through the experience and writing the painful, plodding first draft.

It was the same material, but I felt more like tap dancing than walking in a funeral procession. It helped that by the end of my two-year wait, my blood work was fine, my lymph nodes normal, and my two dear friends no longer at war.

is the author of the forthcoming memoir, Rewriting Illness: A View of My Own (May 23, Mandel Vilar Press), as well as five novels, among them Almost and the National Book Award finalist Slow Dancing, and The Joy of Writing Sex: A Guide for Fiction Writers. She writes regularly for Salmagundi on sexual politics, and her journalism and essays have appeared in the New York Times, Daedalus, Tin House, Harper's Bazaar, Esquire, and many other publications.