I May Look the Same, But…
Sharon Bray, EdD
And the body, what about the body?
Jane Kenyon
The Moment Life Changed
December 8, 2009: I hurried my dog along the sidewalk for a short walk before a lunch meeting with a colleague. As we rounded the uphill corner of the street, I waved a hello to our mailman as we passed by. That was the last thing I remember. Moments later, I opened my eyes to discover I was lying face down on the sidewalk, chin bleeding, and my dog waiting patiently at my side. Within the hour, two ambulances arrived at our house, and my husband had rushed home. I was taken to emergency and, once my chin was stitched up, hospitalized for three days of observation and tests. On the third afternoon, a staff cardiologist appeared at my bedside: “It’s heart failure.”
“Heart failure?” The very term was ominous.
“What does that mean?” Tears spilled down my face. “I can’t die yet! My first grandchild is due next month!”
“You’re not going to die,” he said. His manner was reassuring, but his explanation of heart failure was sparse. He quickly informed me the next step was an angiogram. I spent another restless night in hospital before being taken the next morning to the cardiac surgical center for my angiogram. I felt as if I was in a prolonged state of a confusing dream. As I was recovering from the procedure, another cardiologist appeared at my bedside, briefly introduced himself, and, with very little explanation, asked if I “wanted” an ICD.
I had scant knowledge of ICDs, and his hurried manner did nothing to enhance either my husband’s or my understanding. “We can do it now,” he said, “while you’re still here in the surgical unit. Think of it as ‘insurance’ against this kind of thing happening again.” Dazed and unsure, we reluctantly agreed, given the sense of urgency he conveyed. Three days later, somewhat shaken by the entire ordeal, I was released from the hospital and sent home, a heart failure patient with an ICD in place. Fear of early mortality became a persistent shadow that trailed after me for months.
For the next few years, a pattern of routine checkups with my cardiologist and the ICD technician were the only disruptions to what seemed an otherwise normal life. Bloodwork, though done routinely, was rarely discussed during my brief appointments with my cardiologist. These appointments were little more than a reassuring pattern of a short listen to my heart and his smiling “You’re doing just fine.” My defibrillator checkups were lengthier, due to the complex technical explanations by the ICD technician (a tiny percentage of which I understood), but always ending with “Everything is fine.” My ICD seemed to be getting the lion’s share of medical attention.
Becoming a Heart Failure Patient
I attended an educational session for heart patients, but it lacked specifics on my condition. Most attendees were recovering from a heart attack. The only heart failure patient I’d met happened to be a 90-year-old man who habitually walked around our neighborhood each day at a snail’s pace, stopping to catch his breath at several points along the way. I wondered about my own fate.
It wasn’t until we returned to Toronto in 2017, and I became a patient at the Peter Munk Cardiac Centre, that I was truly “introduced” to heart failure. Frankly, I felt completely unsettled by what being a heart failure patient meant for my life. Many years earlier, I’d been aggressively treated for very early-stage breast cancer, something that prompted my initiation of therapeutic writing groups for cancer patients and survivors. Fear of mortality, often expressed among cancer patients, was something I had not experienced. Now that I grasped the full ramifications of heart failure, that fear took up permanent residence in a far corner of my mind.
My Body Was Becoming a Stranger to Me
To take back some control, I naively sought to be engaged in the heart failure community as I have been in the cancer community. At first, I agreed to participate as a “patient voice” in the domain of heart failure research. My sudden exposure to much of the heart failure research, without fully understanding the condition, was not the most helpful place to begin. Reading about its progression and mortality rates after hospitalization, coupled with a dizzying array of incomprehensible cardiac terminology, did little more than elevate my fears and misunderstanding. The emotional impact of living with heart failure, which I now understood was a progressive condition without a cure, hit home and hit home hard.
On top of my misplaced engagement, I began to notice I was becoming short of breath during physical exertion. Climbing stairs became difficult, something I initially blamed on a case of Achilles tendonitis. The tendonitis is long gone, but stairs remain a challenge. We live close to shops and grocery stores in our Toronto neighborhood, something I’ve always enjoyed as I prefer to run errands on foot. I very quickly realized I was no longer the fleet-footed walker I once was, and worse, walking uphill meant stopping periodically to catch my breath. Now when my husband and I walk together, it’s me who asks, “Can we go a bit slower please?” It’s a far cry from a few years ago, when he routinely complained about my brisk pace. Make no mistake, my body was becoming a stranger to me.
The Challenge to One’s Self Image
The impact of a serious or debilitating illness on one’s self concept and esteem is something that has been written about by many patients. It’s also frequently discussed in the expressive writing groups I lead for cancer patients and survivors, and now people with lived experience of heart failure or disease. I frequently use prompts that invite individuals to explore their feelings about their bodies, before and after a diagnosis, whether heart failure, cancer, or another debilitating condition. Often, participants express a sense of betrayal by their bodies or an altered body, scarred by the disease and its treatment. Yet cancer research and treatments continue to advance and there is, for the majority of those patients, hope for a cure.
By contrast, for heart failure patients, the word “failure” is charged with negative connotations. Heart failure signals the breakdown of our life-giving pump and is described as progressive and incurable. That alone is enough to invite worry or fear. Failure undermines the positivity and hope signaled by advances in diagnosis, treatment, and care for heart patients. I myself take daily medications that help aspects of my heart function, but, and here’s the twist, they have been presented to me as medications to “keep you going a little longer.” Implicit in that well-intended description is the “earlier” mortality risk that has already cemented itself in my mind. The irony for me is, as my cardiologist suspects, my cancer treatment 21 years ago is likely the culprit responsible for my heart failure.
The deceptive thing about living with heart failure is that on the surface, I look the same. Yes, I’m older and my body shows those signs in little but persistent ways: graying hair, more facial lines, declining muscle tone, the complaints common to aging. But I look normal. My ICD is beneath my skin and clothing. There are no visible markers (as there often are with other serious illnesses) to tell people, “She’s a heart failure patient.” But I am. And sometimes, when my defenses are down or I see a “wonky” result on my bloodwork, it can still be a challenge, even 13 years later, to make peace with it.
I am very grateful for my medications, Medly, and the exceptional care I get at Peter Munk. But I am much more aware of what it means to live with heart failure —and the insidious way that word “failure” is synonymous with the fear that sometimes rises to the surface, triggering frustration, even the blues.
To live with heart failure is to challenge the very me I always believed I was, forcing me to re-evaluate the self-image I once had: that once active, healthy, fast-moving, multi-tasking self. Mortality seemed a long way off then. Now, I sometimes wonder if my heart might be concocting other ideas about my longevity. I acknowledge that living with heart failure remains a quiet but persistent challenge to who I once was, before heart failure, and who I now am, living with heart failure. As Jane Kenyon expressed in her poem “Cages,” it is not always easy to come to terms with our changing bodies:
This long struggle to be at home
In the body, this difficult friendship.
(From “Cages,” in Collected Poems, 2005, by Jane Kenyon)
Read more of Sharon’s writings at www.whenlifehurtswriting.ca.
Participate in our “Writing the Heart” expressive writing series led by Sharon.
Cindy