The heart is the locus of physical and spiritual being, and represents the “central wisdom of feeling as opposed to the head-wisdom of reason” (Cooper, 82). It is compassion and understanding, life-giving and complex. It is a symbol for love. Often known as the seat of emotions, the heart is synonymous with affection.
“The heart…represents the “central wisdom of feeling…” Why then, is it so difficult to write from the heart about my heart, the organ first in my body’s development, the workhorse pumping blood through the circulatory system, providing me with oxygen, nutrients, even assisting in the removal of metabolic waste? Why is it easier, at least for this writer, to write of those emotions–love, life, sorrow and grief–“housed” in my heart than to describe what it is like to live with heart failure? It’s the question I keep asking myself, one I cannot yet let go of, yet one that remains unanswered.
I have turned to reading, my “go-to” way to unearth life’s conundrums, shifting my focus away searching for the research studies on psychological factors in heart failure and, instead, hoping to find literature and poetry, the kind of reading that not only inspires me, but offers description, metaphor and imagery, something that helps me put words around this condition called heart failure so I might capture my experience of it. The trouble is, unlike the many memoirs, essays, and poems written of the cancer experience, there is little I’ve been able to find written about the lived experience of a failing heart.
One sheds one’s sicknesses in books–repeats and presents again one’s emotions, to be master of them.—D.H. Lawrence
Turning to literature and poetry when life challenges us is something human beings have done for many hundreds of years, a practice beginning with Plato, and one that continues to the present day. Bibliotherapy, as it’s called, is a therapeutic approach using literature to support mental and emotional health and based on the notion that reading can help to make us emotionally and physically stronger. It, along with poetry therapy, is still used today to assist with addressing a variety of emotional and mental issues, as described in a 2015 article in the New Yorker, “Can Reading Make You Happier?”
The New Yorker article inspired me, and I optimistically began my search with The Novel Cure (2013) written by Ella Berthoud and Susan Elderkin, and containing over 700 novel synopses for a host of ailments such as having cancer, death of a loved one, irritable bowel syndrome, loneliness, orgasms and much more. Surprisingly, while “having cancer” yielded the ten “best novellas” to read during treatment, heart failure or heart disease wasn’t even mentioned in the book’s list of ailments!
Surprised by the lack of illness narratives, essays and poetry I’d been able to find on heart failure and disease, I contacted a friend a short time ago who is a physician, poet and an important force in Stanford University’s “Medicine & the Muse” program within the medical school. “Medicine & the Muse” described as “the home for the arts and humanities at the medical school, offers programs that integrate the arts and humanities into medical education, scholarly endeavors, and the practice of medicine.” Thanks to her, I had the pleasure of leading a creative writing workshop series as part of the program for students, faculty and alumni for twelve years before returning to Toronto. I emailed, asking if she knew of anyone in the medical school writing poetry, fiction or creative nonfiction about heart failure and in general, heart disease. She didn’t, but suggested I access the literature, arts, and medicine database run by New York University.
The NYU database is a valuable resource, and although I found a few potential poems and books concerning heart disease or failure among the citations and annotations, they were remarkably few. I kept searching the database and online, before discovering a 2015 article, “Metaphors of the Heart,” an analysis of American literary fiction conducted by two physicians. Their findings were similar to what I’d experienced: the presence of heart disease in novels has been relatively modest, despite heart failure and disease topping the mortality charts for decades in the U.S., the number one killer of men and women. Their conclusion? “Although fictional heart disease narratives accurately reflect advances on the medical front, biomedical imagery remains limited in its capacity to convey the full meaning of what it means to live with heart disease.”
So it seems I’m certainly not alone in the challenge to define and describe what what living with heart failure means. Yet I can’t help but wonder if, in some way, the paucity of patient stories and the use of imagery and metaphors so prevalent in diseases like cancer, doesn’t also contribute, in some way, to the “complacency” described in the recent New York Times op-ed piece, “Our Coronary Complacency.” As author Mimi Swarz remarked,
“The treatment for heart disease, unlike cancer, can also seem invisible. Maybe, in the later stages, you can find yourself tethered to an oxygen tank, but no one goes bald as a treatment for open-heart surgery, and no one suffers a disfiguring loss that can threaten a person’s sexual being. “You hear the word ‘chemo’ and you see what it does to people,” Ally reminded me. “I never looked sick until it was really bad. You can’t really tell who has heart disease unless you know they do.”
Yes, I nod my head as I read her final sentence. I look relatively healthy, and although I likely pass by several people similarly afflicted with heart failure when I’m walking, running errands, going to appointments, the art gallery or to meet with a friend, there’s nothing that identifies them or me as “living with heart failure” other than my defibrillator, which my shirt conceals; I rid myself of scooped neck tops years ago, unwilling to call attention to the unsightly bulge just below my collar-bone. I like it this way, having the sense of physical normalcy, but at the same time, I wonder if I am gradually lulled into taking my heart for granted in those moments. Only my defibrillator and daily arsenal of medications keep me aware that my heart needs more help to continue functioning as well as possible than it once did.
Meanwhile, I ponder this reality and the questions it raises daily; my notebook is filled with questions, literary citations, things to search out and read. I’ve added a few books to my already over-populated bookshelves, and still hope to find poetry, fiction or nonfiction that helps me capture–and express–my experience of heart failure.
To my readers: Perhaps some of you, who’ve happened on this blog, have already found books that have been helpful or inspirational. Maybe you’ve even written about your heart failure experience too, expressing it in the form of story or poetry. Our storytelling is so important to all of us and to the medical experience. Stories (including poetry) are the way in which we make sense of our lives, helping us to communicate about our illnesses and disease. I think there’s so much yet to explore between us all who are heart failure patients–and given the richness of the experience I’ve had leading expressive writing groups for cancer patients, I am hoping that more of us will write and share our stories and poems of heart failure.
- What helps you describe what it’s like to live with heart failure?
- What metaphors or imagery do you use to describe your heart failure?
- What books, poetry or narratives have you read that helped you come to terms with your heart failure?
- If you have suggestions or resources on this shared experience, you can contact me via email. I’d love to hear from you.