Ellis Avery: On Writing Through Grief, Sickness, and Recovery
Author: Julie R. Enszer
February 29, 2016
“Just as the world of publishing seemed a little toy-like to me after my brush with cancer, my self-importance as a writer, the hallmark of my thirties, seems a little silly to me right now.”
Ellis Avery is the author of two award-winning novels, The Last Nude (Riverhead 2012) and The Teahouse Fire (Riverhead 2006), and a poetry collection, Broken Rooms (Crumpled Press, 2014). Both of Avery’s novels won American Library Association Stonewall Awards for Fiction; she is the only author to receive the award twice. She also received Lambda, Ohioana, and Golden Crown awards for her novels; her work has been translated into six languages. Avery teaches fiction writing at Columbia University.
Her most recent book is The Family Tooth, a memoir about health and sickness, mothers and menstruation, resiliency, and recovery. Avery recently took sometime to talk with Lambda Literary about her work.
A number of the essays discuss the health issues with which you struggle and the dietary changes you make to address your health. Can you give us an update on your health—and your diet?
In 2012, I was diagnosed with leiomyosarcoma, a rare uterine cancer, which I seem to have gotten from my arthritis medication, a drug called Humira. I was told to stop taking Humira and given a hysterectomy and a 26% chance of five-year survival. When it comes to leiomyosarcoma, chemo and radiation don’t change that 26% figure, so I decided to spend what might be my last years without them. For the past three years since going off Humira, all my cancer scans have shown no evidence of disease: hurray!
That said, the autoimmune arthritis for which I took Humira came roaring back with a vengeance. The Family Tooth ends at the point where I’m able to control my arthritis through a severely restricted diet. Sadly, my diet has become even more restricted and the arthritis has gotten worse. I’ve been in a surgical boot for over a year now, and in a mobility scooter for the past year and a half. I wish diet alone had done the trick, but I am currently researching other options.
You describe this book as a “zine” which charmed me immediately. That term situates itself in a particular feminist genre. Tell me about what zines mean to you and why it was important to situate this book in relationship to zines.
The word zine, short for magazine, describes a feminist genre that plays the edge between the personal and the political. When I arrived in San Francisco just after college, I was surrounded by young lesbian and feminist writers who embraced a Riot-Grrrl-inflected DIY attitude toward art-making. They took over copy shops and made their own zines: handmade books of good and bad poetry, ornately illuminated dream-journals, breathtakingly personal essays, and badass political rants. I collected these artworks, and when I had a play about teenage girls produced at New York’s Expanded Arts Theater in 1999, I offered tribute to them by designing the program for the play as a zine.
“Why don’t you make your own books?” I remember a San Francisco poet asking me. I was twenty-one at the time, and a screwed-up blend of timidity and snobbery held me back: I was simultaneously convinced that no one would want to read my little books and that self-publishing was tantamount to admitting that I wasn’t a good enough writer to publish with a “real” press.
The descriptor zine also suggests rightly that the book is a handmade and hand distributed product. How did you make the decision to publish and distribute The Family Tooth yourself?
I used to flatter myself that the publishing world had let me into its charmed circle because I was a good writer. The more pertinent reason, I now believe, lay in my choice of subject matter: 1880s Japan and 1920s Paris appeal to thousands of readers, and the aegis of historical fiction allows authors like Sarah Waters, Emma Donoghue, and Nicola Griffith to write whole novels about lesbian desire—just as I did—without ever using the word “lesbian.” But with The Family Tooth, suddenly I wasn’t writing about the past, or art, or sex, or gorgeous clothes: how painful it was to learn that I was not Joan Didion and that The Family Tooth was not The Year of Magical Thinking.
Despite my track record, the book was rejected by a number of conventional presses on the grounds that collections of essays don’t sell, but when I read the responses from editors, it was pretty obvious that most of them had stopped reading after the scene where I came out to my mother. A grief, cancer, and food memoir was a tough enough sell, the thinking must have gone, but a lesbian grief, cancer, and food memoir may have been one thing too many. One press eventually, grudgingly, offered me a contract so disadvantageous I turned it down.
I had lost my mother, I had nearly died, I had become disabled, and I had a story to tell. Now that I had glimpsed the high country at the edge of being, the valley of the publishing world seemed toy-like to me, Lilliputian. Why did they get to decide my story wasn’t worth reading? That’s when I remembered all the zines I had loved in the Nineties. Did those young women let the publishing world cow them into silence? Realizing my book was a zine gave me a framework in which to be proud for self-publishing instead of ashamed. This was a story I needed desperately to tell in order to rejoin the land of the living, and moreover, it contained information that could possibly save the lives of other people taking medications like Humira. I had nothing to lose but money, I decided, and everything to gain.
Many of the essays in The Family Tooth first appeared as Kindle Singles, Amazon’s program for publishing free-standing essays and short fiction. Has that platform and mode of publishing been an important way for you to connect with your audiences?
Thanks to a lucky confluence of pricing structure and promotion, my first Kindle Single, The Sapphire and the Tooth, reached so many readers that I received a check that paid for the entire print run. Amazon has since wised up, and now I receive a pittance for the other Singles. However, the three essays that were selected for the program have been read by thousands more people than I could possibly reach on my own, a fact for which I am grateful.
What have been your early learnings and experiences from publishing The Family Tooth? Is this an experiment you might repeat?
I am so grateful I didn’t listen to the publishing world and stuff The Family Tooth into a drawer. Circulating a small galley edition of the memoir within my social network via Facebook, Twitter, and Etsy and pitching it to book review outlets myself has brought me a glorious, generous outpouring of messages and emails both from friends with whom I lost touch when I got sick and from readers I’ve never met who tell me that this was a book they needed to read. I’ve been interviewed by bloggers I admire and I’ve received a starred review and an interview from Kirkus. I’ve sold through my first print run and am setting up ebook and print-on-demand editions with Amazon and McNally Jackson Books respectively.
Would I repeat the experiment? If I had another highly personal collection of writing I felt this strongly about and didn’t think I could publish commercially, I’d do it again in a flash.
Within The Family Tooth there is an approach to medicine and health care that seems rooted in the feminist health movement. You research your medical condition—and the recommended treatments and therapies—and work as a partner with doctors, sometimes challenging their recommendations and advice. Can you talk a bit about if and how the feminist health movement influenced you?
I think the health tradition I inherited directly was that of Irish-American doctor avoidance! However, my partner Sharon Marcus participated directly in the feminist health movement in the late Eighties/early Nineties by being part of an organization that set up medical students learning how to do pelvic exams with women trained to perform demonstration exams on each other. I am deeply indebted to her—and to the movement from which her thinking emerged—for expanding my repertoire from medical avoidance to medical critique and collaboration.
I wouldn’t describe what’s going on in media outlets that target female readers right now as a movement, but I would describe it as a trend. There are a lot of important cautionary tales out there right now by women who have learned the hard way how not to approach the medical establishment with the ingratiating self-deprecation that we’re trained to excel in, and I think my own story is a part of that trend. Here are two great examples, one by blogger Patti Digh in 37days, and one by “Grey’s Anatomy” writer Elisabeth Finch in Elle.
Another aspect of the book, what you call in the introduction “the medical narrative,” testifies to the power of telling stories. You write in the introduction that you hope readers will “take what you need for your own research.” How has storytelling influenced you as a medical consumer and as a writer?
If compartmentalization is a skill that allows one to survive, self-integration is a skill that allows one to thrive. As a creative writing instructor, I require my students to turn in a postcard-sized piece of writing every day, eight lines or fewer. I had two students last semester who experienced personal crises and asked if they could turn in longer pieces of daily writing. “Try to keep it to eight lines or fewer,” I said, until I read about what they were going through. “Would it help you if I were to read your daily work?” I asked each of them.
“Yes, absolutely,” they each said. I felt helpless in the face of the legal, emotional, and medical challenges they were facing, and yet they affirmed, vigorously, that the experience of being witnessed was helpful to them all by itself. This is what I mean by self-integration. It’s a two-step process. Shaping unspeakable into a story—be it grief, or trauma, or a brush with death—makes it speakable, allows you to see it whole and entire. It becomes separate from oneself. For a few people, simply writing out the heavy experience is enough to let one set that burden down, but most of us need a reader, someone to share its weight. That is the person I was able to be for my students last semester, and that is the person that a reader of The Family Tooth is able to be for me.
And yet, mysteriously, stories feed readers as well as writers. My imagination and capacity for empathy was fed by the work of my students. And an early reviewer of The Family Tooth said she felt grateful for my book:
I lost a dear friend of mine to cancer recently. Another suffered an accident that will leave him with chronic pain. To say that these incidents left me feeling disinclined to read The Family Tooth, Ellis Avery’s newest work—which focuses on her dealings with cancer, chronic pain, and her mother—is putting it mildly.
Yet, I was astounded at the relief I felt when I read Avery’s description of grief… Like all great works of art, Avery’s writing does more than tell the story of her own struggle, or even simply reflect the anguish we’ve both experienced. The non-fiction tale Avery spins takes pain—hers, mine, perhaps even the world’s—and through the magic of literary alchemy that only the greatest writers have, turns it into beauty.
After I was diagnosed with leiomyosarcoma, a cancer so rare only 2000 Americans have it at any given time, and after finding an FDA warning about leiomyosarcoma and drugs like Humira, I combed the Internet, desperate to find even one person with a story like mine. But I couldn’t. Not one single person online said, “I got leiomyosarcoma after taking one of the new biologic arthritis drugs,” let alone said, “I stopped taking those drugs and the cancer didn’t come back.” Well, I’m that person. Toni Morrison once said, “I write the novels I want to read.” That is what I did with this book.
Although I was seen by a whole team of specialists during my cancer months, the medical professionals who made me feel most cared for were generalists: the physician assistant in my family doctor’s office, an acupuncturist, a functional medicine MD. The difference was in the way that they listened. They took in the big picture, and in so doing, they became repositories of a whole health story.
What project are you working on next?
Just as the world of publishing seemed a little toy-like to me after my brush with cancer, my self-importance as a writer, the hallmark of my thirties, seems a little silly to me right now. So after my heavy memoir on grief, cancer, and becoming disabled, I’m treating myself to a couple of young adult projects, or perhaps books for adults who love YA fiction. This is the kind of novel I used to take myself (or, really, my self-image) too seriously to write. One is responding to the Fukushima disaster, but there’s a dragon instead of a nuclear reactor. The other is about a little black cat who fights evil, and along the way it’s about how cats came up with their own Internet before we did. our cat’s fixed gaze as she stares into space makes sense if you think of it as the “beachball of death” on your computer: she’s just been bumped off the server!
Working on both books, I find that even my lighthearted projects have a way of turning serious. For this reason, I’m grateful that the Kirkus reviewer said The Family Tooth “strikes an uncanny balance between funny and sad.” This means even my serious projects are a little bit funny!
I want to talk a little about pleasure. At the end of The Family Tooth you write, “My capacity for pleasure is so indomitable, even my Spartan diet can’t crush it.” We see so much in The Family Tooth that brings you pleasure—food, particularly foods that you lose, but also an array of objects and experiences. What gives you the capacity for pleasure?
As I said before, the medical studies on leiomyosarcoma I read show that neither chemotherapy nor radiation would increase my chances of survival or prevent recurrence of disease, so I chose to turn down my doctors’ recommendations that I receive either therapy.
My decision to forego cancer treatment and my fierce capacity for pleasure spring from the same underground stream: my queerness. Once you form the habit of listening to your body instead of the voices that tell you to be afraid, it’s hard to stop.