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 us in a higher risk category for contracting COVID just as those living with cancer, undergoing treatments and their continuing recovery.
My experience with cancer was a mild one—very treatable, but the impact enough to influence my shift away from a life in non-profit management to what I loved doing most: writing and teaching. And out of that change, I also began the twenty years of leading expressive writing workshops for cancer patients and others. The writing workshops I lead for cancer patients and survivors have continued, despite this time of Covid, although virtually, and their feelings about living through this pandemic have echoed those of British author, Susie Steiner. Her title of a recent article, “It has been easier to cope with my cancer during lockdown…” in the June 13th issue of The Guardian, got my attention. Currently undergoing treatment for a brain tumor, she began 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.” (The Guardian, June 13, 2020).
“So much of the experience of cancer is the waiting rooms,” Steiner wrote, “ 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 says that it has been easier for her to cope with her cancer during the COVID 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, any of us who fall into that “higher risk” category are 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. Christopher Hutchins, author of Mortality, a collection of essays about his struggle with esophageal cancer, described cancer as “… 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, as Susie Steiner remarks, “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, like writing, are not new. Jenni Odgen, PhD, 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 2014. Written something like a medical dictionary, it matches ailments and illnesses with suggested reading “cures,” although there was no reference to heart failure or other cardiac conditions, mirroring my own frustration at not finding a wealth of literature (poetry, personal essays, memoir) unlike the abundance of such writing by patients and survivors of cancer. (I did find—and became immersed in — In the Country of Hearts, however a beautifully written l book written in 1990 by John Stone, MD, that I have returned to more than once, despite it being 30 years old).
Nevertheless, reading, whether for pleasure, information or healing, helps us to navigate periods of isolation, boredom, and worry. We feel less alone in our situation. 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 been devouring books for the past many weeks. He’s shifted from a diet of current affairs and research psychology to poetry—much to my surprise—systematically making his way through the wealth of poetry volumes on my bookshelves. I’ve added several non-fiction books to my regular diet of fiction, especially biographies of artists and writers, most recently getting immersed in Maggie Doherty’s The Equivalents, which led me to reading biographies of the women writers who were featured in her book.
I have, time and again, found as much or more comfort in reading as when I was a kid, sneaking books to bed and until I was discovered by a watchful parent, reading with a flashlight under the covers, immersed in the stories of others and a world beyond the borders of our small town. In this time of COVID, books—poetry, fiction, nonfiction—have been indispensable for me to combat the boredom and those days when our moods can turn as grey as a dull overcast day.
In her article for The Guardian, Susie Steiner describes how her reading changed during the course of her cancer treatment, and why she turned to books written by other cancer survivors. It’s something common to any of us diagnosed with any serious illness or progressive condition. She was hungry, Steiner said, for what she called “fellow feeling,” something that books and illness stories of others similarly diagnosed can offer. As a patient undergoing treatment and feeling the anxiety of what might lie ahead, she writes, “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.
My sentiments exactly…
Have you found particular books, essays or poetry that have helped you understand or describe your experience of living with heart failure or other serious illnesses in some way?
Have you found comfort or inspiration from any books—no matter the subject?
What books, poetry or essays can you recommend to others living with heart failure? Why?