Regaining Your Voice: Writing Cancer

In these long months of social isolation, I have taken more refuge in my morning writing practice than usual, spending the first hours of the early morning alone with my notebook, a thermos of coffee, and my small dog at my feet.  It’s a practice that not only allows me to plumb the depths of my own thoughts and emotions, but it also alleviates the bouts of anxiety I’ve felt during these long months of a pandemic.  Meanwhile, my husband has taken to immersing himself in poetry—a new endeavor for him–studiously making his way through my poetry collection, over 100 volumes accumulated over many years.   He is not only inspired but obviously finds solace his morning reading routine.  And it’s probably no surprise that in the past several months, I’ve been asked to facilitate many more virtual writing workshops with several cancer organizations.  COVID-19 has heightened the need for ways to interact socially and, for many, use journaling or a writing group to help express the anxieties, fears and loneliness of living with cancer – heightened in a time of this pandemic.  

Baking, creative cuisine, binging on British mysteries, and reading have been the other endeavors I’ve exploited during these long months of social isolation, and not surprisingly, a stack of novels sits on my nightstand.  I’ve found it difficult to read nonfiction:  memoirs of suffering and hardship especially.  But, quite by accident, I picked up what I thought was a novel and instead, discovered a powerful and compelling memoir of one young adult cancer survivor:  Between Two Kingdoms:  A Memoir of A Life Interrupted, by journalist and cancer survivor, Suleika Jaoud.  Jaoud was diagnosed with acute myeloid leukemia at the age of 22 and, for the next three and a half years, much of her life was spent in and out of hospital.  After years of treatments, her life was ultimately saved by a bone marrow transplant, and at age 26, she was declared “in remission.”  Whether you’re a young or older adult living with cancer, Jaoud’s story is, at times, terrifying, but searingly honest and poignant.  Before she was diagnosed with leukemia, her dream was of becoming a war correspondent.  Little did she know that the “war” she would be reporting on was her own life and death struggle with cancer. It was during the many months of treatments that she returned to something she had always “leaned on in difficult times:  keeping a journal.” 

“Illness had turned my gaze inward,” Jaoud wrote.  “As a patient you are constantly asked to investigate the body, to report on yourself, and to narrate your feelings…I understood now why so many writers and artists, while in the thick of illness, became memoirists.  It provided a sense of control, a way to reshare your circumstances on your own terms, in your own words.”

Her survival became her creative act, her journaling allowed her a new way to communicate and imagine herself beyond the confines of her hospital room.  Quoting British author, Jeannette Winterson, she wrote “literature offers—a language powerful enough to say how it is.  It isn’t a hiding place.  It is a finding place.”  Not only a place of discovery, but as we have learned from other patients, writers and psychologists, writing can help us heal. Writing through her illness as Jaoud did ultimately led her to the New York Times and an interactive column, “Life Interrupted, where she chronicled her experience as a young adult living with cancer.  

Writing and poetry were part of the healing process for former US poet laureate, Ted Kooser.  He was diagnosed and treated for oral cancer in 1998, and began writing again during his recovery.   For the entire time of his cancer treatment, he had not written at all, describing himself as “depressed by my illness, preoccupied by the routines of my treatment, and feeling miserably sorry for myself… During the period when I was in surgery and going through radiation, I really didn’t do any writing.

As his radiation treatments were ending, Kooser began a routine of early morning walks through the Nebraska countryside in an effort to regain his physical strength and stamina.  On one November morning, he surprised himself by “trying my hand at a poem.”  From that point on, his morning walks became the inspiration for a series of short poems—only a very few mentioning cancer, most inspired by what he noticed while he walked.   He began pasting the short poems on the backs of postcards and sent them to his friend, novelist and poet, Jim Harrison.    (NPR interview, PBS News Hour, Oct. 21, 2004).  The postcards ultimately became a book of poetry:  Winter Morning Walks:  One Hundred Postcards to Jim Harrison, published in 2001, one in which we see the author’s return to his craft and his love of life.

Just as Jaoud found sanctuary and structure in her journaling, Kooser found his poetry writing helped him regain a sense of control, saying, “It was very important for me to see something from each day that I could do something with and find some order in, because I was surrounded by medical chaos or health chaos of some kind.”

Some time ago, a member of one of my past cancer writing groups sent me a note.  Although in remission, she lives with the knowledge that her cancer is a relentless type, but she finds solace in writing.   She is more aware than ever before that “life is short,” and that she—as we all do—needs to be reminded not to waste it nor be consumed by things that do nothing to help us feel fulfilled and happy.  I thought about her this morning as I began writing, recalling the advice of writer, Annie Dillard, someone Jaoud also referred to in her book.  Dillard advice to writers was: “Write as if you were dying.  We are on terminal patients on this earth; the story is not “if” but “when” death appears in the plot line.” 

Dillard’s advice reminds me of the final line in Jim Harrison’s poem, “Larsen’s Holstein Bull,”  “death steals everything but our stories.” Writing is not only healing, but a way to have voice, to discover insight, meaning and creativity, to share stories of not only struggle, but life and healing that touch others’ lives, helping overcome the isolation and loneliness that often accompanies illness and suffering.  It’s why I write, and why I continue to lead writing workshops for those living with cancer. 

Writing Suggestions:

  • What has helped sustain you in these difficult times?
  • If you have used writing as a way of healing, how has it helped you?
  • Have you found others’ words meaningful, whether poetry or memoir?  Which ones and why?
  • For anyone wishing to write out of difficult times, Suleika Jaoud also offers an online site, The Isolation Journals, which features many different creativity prompts. https://www.theisolationjournals.com/

August 15, 2020: The Comfort Found in Books

I’ve been thinking about how much our daily lives have changed as the COVID lockdowns continue here.  More than that, I think about  what it is that keeps us putting one foot in front of the other on a daily basis, how the small daily routines or household tasks keep me going, providing a sense of normality to our lives even though this prolonged period of social distancing and relative isolation continues without any sure end in sight.  I’m not alone in fending off boredom, feelings of malaise or that constant low-level anxiety that is part of the uncertainly of this strange and isolating time.  Heart failure puts me in a higher risk category for contracting COVID just as those of you living with cancer, undergoing treatment and continuing recovery, and in many cases, your diagnoses pre-dating the onset and rapid spread of the current pandemic.

Not surprisingly, the title of a recent article got my attention: “It has been easier to cope with my cancer during lockdown”  British author Susie Steiner wrote in a recent issue of The Guardian/Books.   In treatment of a brain tumor, she opened her article saying “I wrote my latest novel…with a 9cm tumor pushing my brain over its midline.  But I didn’t know about it.”  Even more ironically, Steiner wrote, “…I was plotting a cancer storyline, not yet knowing that I had cancer.”

“So much of the experience of cancer is the waiting rooms,” Steiner said, “is the hard chairs, the inequality between patients and medical staff—you feel so vulnerable in your elasticated slacks with your terrible hair…waiting for them, terrified, in the Room of Bad News.”  Yet she writes that it has been easier for her to cope with her cancer during lockdown knowing she was not the only one whose life was on hold nor fearful of contracting the virus and possibly dying.

Cold comfort perhaps, but like cancer, we’re all in a kind of waiting game, in limbo, taking greater precautions, dumping the plans we might have had for travel or evenings socializing with friends, amassing a supply of face masks to last however long this pandemic continues to spread.  She quoted Christopher Hutchins, author of Mortality, a collection of essays about his struggle with esophageal cancer.  He described cancer as “stasis… a  bit like lockdown, you spend your time in treatment, saying to yourself, “I just have to get through this, then I’ll get my life back.”

Nevertheless, Steiner writes “it has been easier, weirdly, to cope with my illness during lockdown, because I’m not the only one whose life is on hold, not the only one terrified of dying…”   What has comforted her—and what I find I have also found invaluable–are books.  “One thing you can do a lot of when you’re a patient,” she remarks, “is reading.”

The idea that reading for healing, like writing, is not new. Jenni Odgen, PhD, writing in Psychology Today, notes that Sigmund Freud was known to incorporate literature into his psychoanalytic practice in the late 1800’s, and even King Ramses II of Egypt was known to use reading for healing,  keeping a special chamber for his books with the words “House of Healing for the Soul” above the door.  The term “bibliotherapy,” the art of using books to help people solve personal issues, was first used in 1916.  It now takes many different forms, including literature courses for prison inmates to reading groups for elders suffering from dementia (“Can Reading Make You Happier?” by Ceridwen Dovey, New Yorker, June 9, 2015) .  In fact, two or three years ago, I stumbled onto The Novel Cure, written and published by two bibliotherapists, Ella Berthoud and Susan Elderkin in 2017.  Written something like a medical dictionary, it matches ailments and illnesses with suggested reading “cures,” including having cancer and caring for someone with it.

Reading, whether for pleasure, information or healing, helps us to navigate periods of isolation, boredom, and worry.  Dovey cites research that demonstrates how reading puts our brains into a state similar to meditation, bringing the same benefits of deep relaxation and inner calm.  Regular readers, she notes, sleep better, have lower stress levels, higher self-esteem and lower rates of depression than non-readers.  Quoting the author Jeannette Winterson, she adds, “fiction and poetry are doses, medicines…what they heal is the rupture reality makes on imagination.”

My husband and I have also been devouring books for the past many weeks.  He’s gone from a diet of current affairs and research psychology to poetry; I’ve added several non-fiction books, especially biographies of artists and writers, to my own regular stash of novels. Books are as comforting to us even now as they were when we were children, sneaking our books to bed and reading with a flashlight under the covers, learning about others and the world beyond the borders of our small towns.  In this time of COVID, books—poetry, fiction, nonfiction—have been indispensable to ignite our imagination, interest and combat the boredom on those days when our moods can turn as grey as a dull overcast day.

Susie Steiner, in her article for The Guardian, describes how her reading changed during the course of her cancer treatment, and why she turned to books written by other cancer survivors.   She was hungry, she said,  for what she called “fellow feeling.” Living like this is gruelling,” she wrote, “ we need imaginative empathy in fiction to help us through it.”

This is surely the … therapeutic power of literature – it doesn’t just echo our own experience, recognise, vindicate and validate it – it takes us places we hadn’t imagined but which, once seen, we never forget. When literature is working – the right words in the right place – it offers an orderliness which can shore up readers against the disorder, or lack of control, that afflicts them.—Blake Morrison, “The Reading Cure,” The Guardian/Books/ January 5, 2008.

 

Writing Suggestions:

  • What is helping you get through this time?
  • Whether you are actively dealing with cancer or well into recovery, have you found comfort or inspiration from any books?
  •  Have you learned anything new or helpful about navigating the ups and downs of cancer?
  • What books—any genre—would you recommend to others?  And why?