Book Cover Designer Kelly Ellis

In 2012, after three years on a drug called Humira, prescribed for a crippling autoimmune condition, novelist Ellis Avery was diagnosed with leiomyosarcoma, a rare uterine cancer. She was told it was unlikely she would live past 2017. Avery took to the page to work through her questions and doubts but what resulted was a collection of life-affirming explorations. This past weekend, her latest book-length essay, “On Fear,” was the number one bestselling memoir among Amazon’s Kindle Singles.

Despite the dismal prognosis, Avery decided to turn down radiation and chemo treatment since there was no proof of their effectiveness for her condition. Then the waiting game began, and she had to find ways to manage the doubts she had about whether or not she made the right decision, and if her scans would reveal bad news.

“On Fear”, the second essay in a series on Kindle Singles, tells the story of how Avery learned to cope with her condition, and also how her life continued to bloom around her despite it.

There is cancer and then there is the life that continues to happen to you despite the cancer.

At first, I hesitated to read the essay. I have a hard time reading about cancer and medical treatments without getting depressed and overwhelmed. But “On Fear” is a different kind of story. Avery manages to temper the very human fears and concerns that come with the diagnosis of a life-threatening illness with clarity, insight, and welcoming humor. There is cancer and then there is the life that continues to happen to you despite the cancer. This is precisely what Avery captures with her sharp, crisp prose. In these glimpses of human life, it’s easy to see how the calm and strength to survive creep in. The essay weaves in and out of medical scenes, warm intimate exchanges with loved ones, and deep personal meditations:

Walking around my neighborhood that June, I felt my future slam shut, as implacable as a shopkeeper’s gate. I could not face the novel I’d been writing. I told the university where I taught that I wouldn’t be available to work in the fall. My partner and I had been slated to spend the following spring teaching in Paris, but I might have to be in treatment then: We cancelled our plans.

Amidst the grim, clotted hours of appointments, phone calls, and online medical research, it occurred to us that, for the first time in years, with no travel plans on the horizon, we could toy with the idea of getting a pet. My partner began to wonder aloud, “Should we just get a cat now? I mean, what’s stopping us?”

“There are dozens of cute black shelter cats on,” I said helpfully.

“So this is what you’re into behind my back! Pet porn!”

Two weeks of fostering later, it was official: We signed the adoption papers, and a little black cat named Fumiko entered our lives.

If I could feel that way about two children I’d known for only a few years, why not try feeling that way for myself? “I love you, fearful Ellis,” I told myself again.

Avery’s self-awareness is compelling. She doesn’t sentimentalize her condition or rely on melodrama at all. She holds up a mirror to how she coped—both the real and imagined phone calls, how she took and didn’t take advice from books, what she sang in the shower, when she saw aspects of her parents in herself, when she saw the opposite:

In one of my how-to-meditate books, Stephen Levine wrote about trying to love even the least lovable parts of oneself “as if you were your only child.” It sounded like a nice idea. A cloyingly nice one. I tried it anyway, the next time I caught myself seduced by the fear video: “I love you, fearful Ellis,” I told myself experimentally.

Feeling uncomfortable with this inner-child stuff, I pictured some real children instead: my three-and-a-half-year-old twin nephews. If Aidan or Owen felt afraid, I would hold him until he felt better. Even if he expressed his fear in a whiny manner, I might feel impatient in the moment, but my love was bigger than my exasperation, and certainly bigger than a little boy’s fear. If I could feel that way about two children I’d known for only a few years, why not try feeling that way for myself? “I love you, fearful Ellis,” I told myself again, imagining me as one of my nephews, burying his head, my head, in Aunt Ellis’s shoulder.

Giving my scared self a hug didn’t make the fear go away, no more than trying to clamp down on the STOP button had. But it did inject some air into and around the leaden terror.

This isn’t an essay exclusively for those who are battling or have battled with cancer. It is an essay for those interested in how other human beings think and experience life despite cancer.

-Raluca Albu for Guernica

Guernica: Why did you write “On Fear?”

Ellis Avery: “On Fear” is the second in a series of essays on grief, illness, and food entitled The Family Tooth, which is coming out later this fall. Six months after my mother’s death, in 2012, I was diagnosed with a rare uterine cancer: I was given a hysterectomy and a 26 percent chance of five-year survival. Going off my arthritis drugs seems to have kept the cancer from returning, but by the beginning of 2013, I was stuck in a mobility scooter, crippled by an autoimmune condition called Reiter’s Syndrome.

Guernica: You also have a book of essays coming out, The Family Tooth, exploring the connection betweens between grief, and food, and life style choices. What decisions went in to deciding how you would write about illness?

Ellis Avery: The Family Tooth is a cancer story sandwiched inside a grief-and-food memoir, but more than that, it’s a story of hope and, ultimately, triumph: it’s an account of the medical and psychological sleuthing that enabled me, a year later, to walk again.

My zine—so-called in tribute to the raw, inspiring, confessional, messy experiments in feminist self-publishing I loved when I was a young adult—is written in two genres, the personal memoir and the medical narrative. It was composed with two audiences in mind: The general reader is more than welcome to skip over its detailed medical material, but readers facing the specific health challenges I did might have felt shortchanged had I supplied less detail. I offer no health advice, but for readers who face leiomyosarcoma or other uterine cancers; Reiter’s syndrome or other autoimmune arthritis; uveitis or other chronic eye inflammation; who take Humira or other tumor necrosis factor blockers; who find themselves in a mobility scooter or looking down the barrel of surgical menopause, when they read The Family Tooth, I hope they’ll take what they need for their own research without feeling obliged to read the rest.

Guernica: Why food? It’s a brave choice — not one most people thematically align in their minds with stories about cancer treatment and grieving the loss of a parent. There seems to be an inherent mission in the text to edify.

The thread that pulls the essays of The Family Tooth together is food, both in terms of the dietary changes that helped me out of the scooter and onto my feet, and in the way I came to recognize my mother’s appetite in my own. At the time of her death, I was not sympathetic to my mother’s alcoholism. Over the course of the year that followed, as I learned both that I could control my arthritic pain through diet and that not eating what I wanted (day after day, eleven hundred meals a year) was perhaps the hardest thing I’d ever done, I discovered a deeper compassion for my mother than I had previously imagined.

My Kindle essay, “On Fear”, is the cancer story at the center of The Family Tooth, and it’s the propulsive force behind the shift toward greater compassion for my mother that the memoir traces. If the “stakes” question of The Family Tooth is, “Will the author forgive her mother and move on with her life?” the stakes of “On Fear” are life and death itself. “On Fear” is not an essay about TNF blockers, per se, but they are among the most profitable drugs in the history of medicine: if you know anyone who is on Humira, or Enbrel, or any of the others, please tell them my story. Neither my rheumatologist nor my oncologist would ever say that Humira had given me leiomyosarcoma, but once I was diagnosed, both insisted that I stop taking it.

While most readers will never face leiomyosarcoma, all of us sometimes face fear: if anyone comes away from my essay feeling armed by the tools with which I learned to confront my own fear, or even simply a little less alone, my suffering will have been that much the less in vain.

Andrew R. Rose

Andrew R. Rose is a student in NYU's Cultural Reporting and Criticism program. He tweets @signandsight and lives in Brooklyn.

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