The First Question: What Does it Mean to Live with Heart Failure?

Most patients with chronic illness, like the rest of us, live quietly and unremarkably in the daily struggle of living.  Our pains, like our joys, are small, interior, simple.  There is no great moment to the illness or the life.  Yet illness…sometimes brings a kind of passion and knowledge of the human condition, giving an edge to life. –Arthur Kleinman, MD, The Illness Narratives, 1988

I’m face to face with every writer’s struggle:  how to begin.  The advice and encouragement I’ve offered men and women in my expressive writing workshops and creative nonfiction classes echoes persistently in my head:  “Begin anywhere.  Write anything.   Keep the pen moving.  Write what matters.  Tell the truth.  Go deep.  Remember, writing is a courageous act.”  And, it turns out,  writing is also difficult, especially  when one is attempting to express the impact of a chronic,  non-curable condition on your own life.

For the years I’ve been involved in the cancer community,  I’ve  used the term, “those who live with cancer,” instead of ” cancer survivor.”  Living with cancer implies that, even after treatment and recovery, one’s  life is forever altered, and  whether declared “cancer free” or “in remission,” for many, cancer has begun to be more like a chronic illness, new medical advances enabling more patients to survive for longer and longer periods.

There is no cure for heart failure, although advances in drug therapies may help to manage and perhaps, slow the progression of the inevitable.  Living with heart failure, other than those qualify and have the good fortune of a successful heart transplant, means that the shadow of one’s mortality is a silent, but persistent companion.

“When you learn your life is threatened,” literary critic Anatole Broyard wrote after being diagnosed with advanced prostate cancer, “you can turn toward this knowledge or away from it… I realized for the first time,” he said, “I don’t have forever.”  (Intoxicated By My Illness, 1992)

We were living in California in 2008 after I collapsed walking my dog and ended up in emergency and three days of observation.  When I was told by a cardiologist I had heart failure,  atrial arrhythmia and fibrillation,  I burst into tears.  “I can’t die yet,” I sobbed.  “My first grandchild is about to be born.”  Up until that moment, I hadn’t stopped to consider my life might end sooner than I assumed.  I understood, perhaps for the first time, the fear of dying many of the cancer patients expressed in the writing they shared in my workshops.

But I, like many perhaps, was gradually lulled into a sense of denial of sorts, my implanted cardiac device serving as the one constant reminder I was living with a heart condition.  Otherwise, my life was nearly normal save for the annual check-ups with my cardiologist and the ICD technician.  I admitted, early on, that I was feeling a little depressed, and was immediately prescribed Zoloft, an antidepressant, which I took for a short time before asking to be taken off the drug.  I didn’t think my “blues” were serious enough to warrant a prescription, but I think it would have helped to be able to talk about heart failure with others similarly diagnosed.  The only person I knew who suffered from heart failure was a 90 year old neighbor, whom I greeted each day as we encountered one another on our morning walks.  His life ended two years later; mine went on.  “You’re doing fine,” my cardiologist said each year.  And so I was, compared to many, but it didn’t mean my heart functioning was improving.

When a person becomes a patient, physicians take over her body, and their understanding of the body separates it from the rest of her life…Medicine cannot enter the experience; it seeks only cure or management.–Arthur Frank, At the Will of the Body,1991/2002)

Fast Forward to 2017 and our return to Toronto.  I had yet to find a family physician or qualify for OHIP (Ontario Health Insurance Plan) when I went searching for a cardiologist, primarily concerned that my ICD be connected to a Toronto vs. a California facility.  I stumbled onto the name and biography of a cardiologist at Toronto’s Peter Munk Cardiac Center, and miraculously, she agreed to take me on as a patient.  Whatever forces were in play at the time, I do not know, but to this day, I feel extraordinarily lucky.  My cardiac care was elevated to a new level of patient care and follow-up I hadn’t experienced before–and I will be forever grateful.

For starters, the reality of having heart failure was something I finally had to face.   My health history was reviewed in earnest.  I was tested; my medications reviewed and strengthened; new ones added.  Encounters with my cardiologist were frank, informative and while I was forced to accept my heart’s functioning had declined, my treatment has operated in a spirit of partnership.  It was she who urged me to become “engaged” in heart failure care, whose introductions led me to other cardiologists and health care professionals organized around improving heart failure care in Canada, which provided the impetus to learn about those efforts and the patient experience in treatment and care.  One thing has led to another, and among the outcomes, I realized that I need to address the question that has refused to be silenced:   what does it mean for me to be a heart failure patient, to live with a condition that over time, points to mortality, and one that forces me to make sense of what is happening in my body and how it impacts my whole life?  And where do I begin?

The patient has to start by treating his illness not as a disaster, an occasion for depression or panic, but as a narrative, a story.  Stories are antibodies against illness and pain.  –Anatole Broyard, Intoxicated by My Illness, 1992

Stories have to repair the damage that illness has done to the ill person’s sense of where she is in life and where she may be going.  Stories  are a way of redrawing maps and finding new destinations. —Arthur Frank, The Wounded Storyteller, 1995

So I have turned to what has always been my refuge and my way of understanding the different chapters of my life, how I discover meaning and insight from my experience, and not unimportantly, informs the very practice of I have of leading expressive writing groups for those living with cancer, at risk teens, the bereaved, and so many others writing from pain, struggle and hardship.  I write.  So far, the words are coming slowly, but they are coming.

“Our mortality is not something to be overcome,” Allison Arieff writes in yesterday’s New York Times, her opinion piece protesting the new “life extension” movement in Silicon Valley.  “It is integral to our humanity…  I believe that…our humanness is inextricably intertwined with the fact of our mortality.”  Great literature–fiction, nonfiction and poetry–has had, as its subject, the human condition, its tragedies, hardships, joys and sorrows, and from it, given us descriptions, metaphors, images, stories–the ever compelling exploration of what it means to be human in all our many chapters of life, birth to death.

Because I love and use a good deal of poetry and literature to inspire the writing from those who attend my writing groups,  I have been searching for literature and poetry that expresses the emotions of heart disease and failure or offers imagery, metaphors and descriptions to capture some of what I feel.   Despite the fact that the heart has long been considered the symbol of human emotion, the experience of living with heart failure or disease is sorely under-represented, unlike the wealth of cancer-themed memoir, fiction and poetry, something I hope to write more about as I explore my own experience as a heart failure patient.

For now, if you’ve happened upon this blog and are living with heart failure/heart disease, I invite you to consider this one not-so-simple question that I am beginning to address myself:  What does it mean to live with heart failure (or heart disease?)  Why not write about it?  An essay, a poem, a story–it doesn’t matter what form you prefer; what matters is that you write.

I’d like to hear from you.

Sharon

3 thoughts on “The First Question: What Does it Mean to Live with Heart Failure?

  1. Great blog mom. You should find a way of showing the word. Through Dr Roth’s networks but perhaps also out NGOs or charities related to heart issues. ❤️

    Like

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