September 24, 2018: Communicating the Experience of Illness

 When the heart speaks, take good notes.–Joseph Campbell

I admit it.  Writing from a personal experience of heart failure is far more challenging than I imagined.  I’ve tried to understand why, especially when I’ve found relative ease in writing a continuing blog about cancer.  I’ve had long discussions with my husband, mulling over the differences that do, perhaps, account for this struggle.  Part of it is that cancer, although I had a slight brush with it, was never life-threatening in my case.  Heart failure is an altogether different matter.   Am I afraid to plumb the depths of what it means to me to be a heart failure patient?  Perhaps, because there’s something in that diagnosis, “heart failure,” that defies my sense of myself and my longevity.

Yet I look normal.  I walk around the city, ride the transit system to appointments and run errands, participate in a weekly dance group, a choir, and lead a writing group for cancer patients.  I don’t look like someone with a heart problem.  My defibrillator is hidden beneath my clothes, and only my husband sees me taking my daily regimen of medications for this condition.  And yet, if I scan the internet for more research studies on heart failure and its prognosis, I turn away, feeling a flash of anxiety.   I’ve already defied the average statistics on life expectancy in heart failure, now in my tenth year since my diagnosis.  Yet I’ve struggled to find the words I want, the organizing idea that allows me to do more than merely report on the technical and medical aspects of my condition.  Writing, which usually comes easily for me, has been a struggle in this domain that I didn’t expect.

Two weeks ago, my I wrote here about my search for metaphors to describe the experience of heart failure, optimistically having turned to my usual source of poetry and literature to find descriptions, imagery, and metaphors like those so prevalent in other illnesses.  I hadn’t expected to find such scant listings of poems, novels or memoirs that referred to heart failure or disease, so I kept digging, starting with the ways I think about or refer to my heart.

It’s a workhorse, this heart of mine, and until my diagnosis in 2008, I didn’t give it much thought.  It was reliable, uncomplaining, nearly silent, save for the times I’d check my pulse after exercising.  Other of my bodily parts got more attention:  an arthritic knee, occasional bladder infection, Achilles tendonitis, or the migraine-like headaches I’ve been prone to since having neurosurgery as a teenager.  And despite treatment for DCIS (ductal carcinoma in situ) my health was good, my ailments relatively minor, particularly when I listened to cancer patients’ stories shared in my writing groups : their surgeries, chemotherapy, side-effects, and for some, terminal prognosis.  I’d go home from those sessions many times with an “aching heart,” my common description of grief or sorrow.  My heart was not literally hurting; but I was simply expressing my emotions in ways common to everyone.  The heart, after all, has long been considered the “home of the soul, seat of love, place of wisdom and justice, and the symbol of our vitality.” (Carter, Our Human Hearts, 2006).  John Stone, MD, a cardiologist and poet, has suggested we each have two hearts within us, the literal, blood pumping organ, and the metaphorical heart, the symbolic center for our emotions. (In the Country of Hearts, 1990).

Metaphors, many agree, are essential to our ability to describe and convey the experience of illness–not just for the patient, but for the physician as well.  In a world where medicine is increasingly dominated by technological and pharmaceutical advances, we communicate our experience of illness through our metaphors.  Since humans began communicating with one another, it has been through stories and the metaphors we use that we can make sense of our worlds.  Even though our metaphors can sometimes be simplistic or misleading, it’s how we communicate our experience of our illness.  And according to Benjamin Oldfield (Johns Hopkins) and David Jones (Harvard University), “because of the limited ability of the biomedical narrative to convey the meanings of disease and treatments, doctors and patients need to communicate through the rich possibilities of metaphor” and, I would add, their stories of the illness experience.  (Perspectives in Biology and Medicine 57 (3): 424-442)2014),

In the article, Oldfield and Jones trace the heart’s metaphorical development in literature alongside the changing diagnostic and therapeutic landscape of heart disease, beginning with poetry and literature of the 19th century and tracing the progress and shifts in thinking about heart disease and use of metaphors to the present day.  In each of the seven phases discussed, they present examples of literature:  novels and their protagonists, the metaphors used which also reflect ongoing shifts in the way the heart disease is viewed and described.  While cardiac science and medicine have evolved to give us a much more precise understanding of the heart and its dysfunction, the authors argue that the technical details do not do justice to the emotional meanings of cardiac disease and medicine, “and metaphor remains essential.”

Body my house

my horse my hound   

what will I do

when you are fallen…

(From: “Question,” by May Sarton, In: Nature: Poems Old and New,1994)

Our metaphors are bound up in our narratives we use to describe how illness affects our lives.  Their importance to the patient-doctor relationship is something that Rita Charon, MD, knows well.   Charon is the executive director of the Narrative Medicine at Columbia and originated the discipline of narrative medicine.  As described on the Columbia University site, narrative medicine advocates:  The care of the sick unfolds in stories. The effective practice of healthcare requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice. It addresses the need of patients and caregivers to voice their experience, to be heard and to be valued, and it acknowledges the power of narrative to change the way care is given and received.

The stories of our medical experience and of heart failure, the metaphors we use to describe them, are important and  unique to each of us.  Storytelling is medicine’s currency, according to Emily Silver, MD, writing in JAMA (October 2017, V 177, No. 10)).  Patients describe their symptoms using narratives.  “Doctor, my legs are so swollen that I can barely walk to the bus stop.”  The physician translates his patient’s symptoms into medical language for her records and to communicate with other physicians:  “This is a 53-year-old woman with heart failure and reduced ejection fraction.”  But he comes to understand her illness–and his patient–through her stories and the metaphors she uses.

…In growing as a science, medicine has forgotten that it is an art, which like other arts must celebrate the creation of stories. Increasingly, the medical profession is looking to a literary cure. The past five years have seen an explosion of writing about illness by both physicians and patients who — like the Romantic poets during the Industrial Revolution — are trying to restore a sense of meaning and healing to counter the dehumanizing effects of technological explosion.  (NYTimes, April 18, 2004)

As patients and individuals living with heart failure, we need to honor our stories and the metaphors we use to describe our experience.  They are essential in the facilitating understanding, diagnoses and our care in our doctor-patient relationships.    Your story and matter.  We are our stories.  Not only do we make sense of our lives through story and metaphor, but through them, we can better communicate the experiences of illness to our physicians, family members, and others with illnesses like our own.  The metaphors we use, the stories we share from our experience of heart failure or any other illness, these are instrumental in creating understanding, in deepening our knowledge of the experience of living with or suffering from heart failure or any life threatening illness.

But in order to make you understand, to give you my life, I must tell you a story—and there are so many, and so many—stories of childhood, stories of school, love, marriage, and death…
–Virginia Woolf

Writing Suggestions:  Exploring your stories of and metaphors of heart failure

  1. Write the story of the day you were first diagnosed with heart failure. Where were you?  What were your symptoms?  What concerns or fears did you have?  Was it a surprise, a shock?  What metaphors come to mind as you replay this memory?
  2. How did you think about–or visualize/describe–your heart before you learned you had heart failure? How do you think about it now?  What descriptive phrases or metaphors do you use to describe it?  (A good way to get started on this exercise is to divide your paper into two columns:  Before HF/After HF and simply jot down the words and metaphors that come to mind for 2 or 3 minutes.  Read it over and then write the full narrative.
  3. Does your physician take time to listen to your story of heart failure or its symptoms before discussing treatment or drugs? How did it make you feel?

 

 

 

 

 

 

 

 

September 9, 2018: Searching for the Metaphors of Heart Failure

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.

 

August 25, 2018: Fear

What you fear
will not go away: it will take you into
yourself and bless you and keep you.
That’s the world, and we all live there. 

(From: “For My Young Friends Who are Afraid,” by William Stafford, In:  Ask Me:  100 Essential Poems, 2014)

It was the suddenness of it, the disbelief and shock, and a sense of unreality.  Then there was the fear.  “We think you’ve had a heart attack.”  My family doctor was at my bedside.  She’d come to the hospital to see me a day after I was admitted for observation.

“What are you doing here, Dr. B.?”

“I saw you’d been admitted, and I had to come as soon as I could.  I wanted to be the first to tell you…

“Tell me what?”

“We think you’ve had a heart attack…”

“What?  No…I just had a physical two weeks ago…Everything was fine.   Dr. B., I can’t die yet! I have a grandson about to be born!”  I burst into tears.

She tried to reassure me.  “You aren’t going to die, and the results aren’t clear.  I’ve asked the cardiologist, to go over your test results.  He’ll be here soon.”

The cardiologist arrived a short time later.  I hadn’t suffered a heart attack, he said, but I was experiencing heart failure.   I didn’t know, exactly, what heart failure meant nor how it differed from a heart attack.  He was patient with my questions, understanding of my weepy state, and reassuring.  Three days later, I was discharged, a heart failure patient with a thick bandage covering a mound of bulging skin just below my left collarbone.  It was destined to be my constant reminder of the implanted cardiac device, a defibrillator, impossible to ignore, and the certain fact I was now living with heart failure.  I felt vulnerable in a way I had never before experienced.

For the first several months, most of my days and nights were punctuated by anxiety, the lingering disbelief that I had become a heart failure patient and an exaggerated fear of mortality.  I was slow to share my diagnosis with others than close friends and immediate family members.  Even then, there was the question, “Heart failure?  What does that mean?”  I shied away from reading too much about heart failure; the statistics were not in my favor.

…My heart is more duplicitous…

It says, I want, I don’t want, I

want, and then a pause.

 

It forces me to listen…

 

It is a constant pestering

in my ears…

I want, I don’t want

How can one live with such a heart?

(From “The Woman Who Could Not Live with her Faulty Heart,” by Margaret Atwood, In:  Selected Poems II:  1976-86)

It’s nearly ten years since I was first diagnosed.  I “look” normal, other than the bulge beneath my collar bone, which dictated a change in the choice of shirt necklines to keep it as hidden as possible.  After the initial diagnosis, my annual visits to the cardiologist and defibrillator clinic in California were routine.  Other than annual blood work, there were few tests over the next nine years; the conversations were pleasant, but more often, general.

“How are you doing?”

“Fine, I think.”

“Let’s listen to your heart.”

And I would  leave his office, his words, “You’re doing fine,” echoing in my head.

I was lulled, in some ways, into a false sense of well being, as if I didn’t belong in the waiting room with the other patients.  I’ve never felt my defibrillator, and I’ve questioned whether it was truly needed, especially since a recent echocardiogram showed suspicious growths on the lead wires, suspected to be blood clots. Apparently it is.  “I’ll put your doubts about that to rest,” the cardiologist in the defibrillator clinic  replied when I asked.  “You have episodes of ventricular tachycardia.  I wouldn’t want you walking around without your defibrillator.”

Another suspected blot clot showed up two weeks ago in my echocardiogram.  Warfarin has been added to my medications in the hope that they will be dissolved before they cause any problems.  Yet another phase, another medication, that living with heart failure warrants.  For a few days, my fears and worries were close to the surface, but another pill in the daily arsenal has gotten progresssively easier to accept.  I push my fears or anxiety as far from my mind as I can, reminding myself of all the heart failure patients who have far more serious heart conditions than I do.

A 2010 narrative review of studies on the experience of living with chronic heart failure, reported in BMC Health Services Research, identified the most predominant impacts on a patient’s daily life from living with chronic heart failure.  They were social isolation,  and losing a sense of control and living in fear. Social isolation was a product of the necessary life style changes due to shortness of breath, fatigue, and medication regimes negatively impacting patients’ ability to socialize with friends and family.  Patients’ reported sense of losing control over one’s illness occurred when they felt they no longer were able to influence their lives or illnesses.  And not surprisingly, living in fear of pain, death or one’s future was reported as a central aspect of chronic heart failure in several different studies, although women tended to report fear more often than men.

I’ve thought a lot about  how fear is expressed by the men and women from my cancer writing groups.  Fear has been the most commonly expressed emotion when I’ve asked them to explore the experience of being diagnosed with cancer.  For most, that fear gives way to hope as treatment progresses, and for many, the words “cancer-free” or “remission” following treatments are delivered.  But for those who hear the word, “terminal,”the prospect of dying is soul wrenching, but there is time before cancer claims the body.  When my father was diagnosed with lung cancer in 1992, he was handed his death sentence, just three months left to live.  As painful as it was, we were all were grateful for those precious last weeks.  We had time to be with him, to prepare for losing him, to let him know how much we loved him.

With heart problems, my fears were of sudden disappearance.  With most cancers there is little fear of sudden  death.  Fears vary.  Differences in fears are part of the individual experience in illness.  If a heart attack blows you away, cancer chips at you bit by bit.  — Arthur Frank, At the Will of the Body

We all carry our own brand of fear, and mine, if I’m honest about it, is a constant shadow that trails around after me, invading my  daydreams or my night thoughts without warning.  I sometimes awaken in the middle of the night and wonder how long I’ve got.  My younger daughter and her family have recently returned to live a number of years in Okinawa, Japan, and I feel heartache at the thought of not, perhaps, being able to travel overseas to visit her and my grandchildren.  I question if I should get things in order now rather than later, whatever “getting things in order”  means, since it is the possibility of an errant blot clot that introduces the “suddenness” of life ending that I try not to think about.  Then I hear myself telling a concerned friend that my intent is to do whatever I have to do to live as fully and as long as I can.  And I know I mean it.

I see the worry in my husband’s face when  I come home from another appointment with my cardiologist.   I recount to him the latest discussion with my doctor, but I find it difficult to admit fear or worry to him or my daughters.  Besides, I am all too aware of others, many much younger than I am, living with heart failure and disease.

I’ve been fortunate for the extraordinary care I experience here in Toronto.  But it doesn’t mean I don’t scour the results of every cardiology appointment and tests, familiarize myself with new terminology and read whatever relevant research I can find online about  aspects in my file labeled as “abnormal” whether in my blood work, or as most recently, appearing on my echocardiogram.  As I do,  I feel the fear yawning awake and peering over my shoulder.  I do my best to push it aside, before my worry is exacerbated and the fear of sudden, unexpected mortality surfaces, food for the dark shadow rarely far from my consciousness.

“For fear, real fear such as shakes you to your foundation, such as you feel when you are brought to your mortal end… So you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don’t , if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.”  From The Life of Pi, 2001, by Yann Martel, p. 162

Is fear more manageable if we bring it into the open?  I think it is, which is why I’m attempting to write about it.  Each of us experiences fear at different times in our lives.  It’s the body’s and mind’s reaction to a perceived threat.  Fear kick-starts our metabolism, useful in times of real threat, but not as useful if it takes up residence in our daily life, as it easily does when we live with the knowledge that heart failure leads, ultimately, to death.  There is no cure.  Prolonged fear suppresses the immune system, and it hinders our ability to be fully present to the here and now of our lives.  The challenge, especially when fear seems to move in with us like a roommate we can’t get rid of, is to keep it from diminishing our ability to live fully and enjoy the life we have.  I think now, as I consider my fear,  of Joy Harjo’s poem, “I Give You Back,” as she describes coming to terms with fear and letting it go:

…I take myself back, fear.
You are not my shadow any longer.
I won’t hold you in my hands.
You can’t live in my eyes, my ears, my voice
my belly, or in my heart my heart
my heart my heart.

But come here, fear
I am alive and you are so afraid
of dying.

(From:  She Had Some Horses, 1983)

Suggestions for Writing:

Look fear in the face and writing about it, whether in story form, an essay or poem:

  • What keeps you awake at night?
  • When do you feel most vulnerable?
  • When does fear most often visit you?
  • What do you do to hold fear at bay?
  • If you had a metaphor or description to illustrate the fear you feel from heart failure, what would it be?

 

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

The Beginning: Writing the Heart

Fill your paper with the breathings of your heart.  — William Wordsworth

The Beginning.  One toe in the water as I have begun plumbing the depths of my experience as a person living with heart failure.  It’s a journey I began, unwillingly and more or less privately, in 2008.  I collapsed on the pavement while walking my dog, was rushed to emergency, admitted to observation for three days and subsequently, I was diagnosed with heart failure.  An ICD was inserted in the same week, and out of the numbness I felt, I learned I was facing a condition that, if I looked too closely, forced me to consider mortality, facing my destiny, as novelist Alice Hoffman once said, “sooner rather than later.

It’s time I take a deep dive into what it means to live with heart failure.  This blog is a start, and, I hope, one that will encourage others to reflect on and write about their experience of heart failure–beyond the shock of diagnosis, revealing the deeper experience–fears, questions, emotions, spirituality.  It’s one of the reasons why, for the past twelve plus years, I’ve written a weekly blog, “writingthroughcancer.com (.ca)” aimed at those who live with cancer.  The blog began as an outgrowth of the expressive writing groups I’ve led at multiple cancer centers and organizations since 2000 and the body of research on the healing aspects of expressive writing.  I’d had an early stage brush with cancer at the time, but not serious or life threatening.  It was only a few years later, in 2008, when I was first diagnosed with heart failure, that the fear of mortality sooner than I had imagined for myself, began to surface.  In truth, I’ve buried those thoughts and fears more than I’ve acknowledged them.  I am ready now to take my own deep dive into what it means, for me, to be a heart failure patient.

How did it happen?  In the past several weeks, I was called into action to offer a patient’s perspective on the heart failure journey in Canada.  I’ve found it challenging, less because I’m a recent returnee to the Canadian healthcare system after several years of working and living in California, and more because it forces me to examine my condition and research, stirring up many mixed emotions, thoughts, curiosities and questions.  Ironically, I’ve begun to realize that it has also begun to make this journey of heart failure a little less lonely.

What I hope for this site is twofold:  one, I do my own work of reflecting and writing about this condition, which I’ve discovered more women die from annually than from breast cancer, and has been recognized as a national public health priority in Canada.  Shortly after being invited to participate as the patient representative in another committee of cardiologists and healthcare professionals working on an optimal model for Heart Failure care in Canada,  I was plunged into reading and reflecting on the  differences I’ve experienced in patient support of those living with cancer vs. those, like me, living with heart failure.   Those initial reflections became the July 30th post for my e “www.writingthroughcancer” blog site.   Entitled “Transitions:  Matters of the Heart,” I’ve   posted it here as a prelude to what, I hope, will be an honest examination of this patient’s experience of heart failure and I hope, inspire other heart failure patients to express their own reflections, questions and illness narratives, whether personal essay, narrative or poetry–that captures the journey through heart failure.  Unlike the dozens of memoirs, poetry and essays written by cancer survivors, I’ve been hard put to find comparable writing in the heart failure or heart disease community.  I hope that my voice will be joined by others, writing from the lived experience of living with heart failure.

If you’ve stumbled on this new blog site, thank you for reading.  A feature of each post, likely bi-weekly or monthly, will be to include questions or suggestions for your writing.  I invite comments and from time to time, submissions from other heart failure patients who are exploring what it means to live with heart failure.  Thank you for reading, and please encourage other heart failure patients who may be interested to join me in writing from the experience of a condition that has no cure.

Thank you.  Sharon Bray.

How it began–my first post from July 30, 2018:  Transitions:  Matters of the Heart

Earlier this morning I participated in a conference call with a group of medical professionals in the Canadian Heart Failure community, a group tasked with creating a joint paper on Heart Failure care guidelines in Canada.  I was invited to represent a patient perspective, but admittedly, I was taking copious notes in a conversation that, like most specialties, has its own lingo–acronyms and terms unique to the field but for me, akin to a foreign language.  At the conclusion of the call, the group was divided into sub-groups, each tasked with writing and submitting questions to be included in a national survey on heart failure treatment, care and transitions.   I was assigned to explore and formulate questions dealing with transitions for heart failure patients.

Ironically, just last week, I’d been part of a survivors’ retreat, “Transitions,” at Gilda’s Club here in Toronto, where I led a writing  workshop on the process of transitioning from patient to “survivor.”  After this morning’s call ended today, however,  I wondered how “transition,” in heart failure terms, differed from the way in which it was used in our workshop last week.

At the retreat, we used it synonymously with becoming a cancer survivor–someone who has been, if not cured, given a number of years of being “in remission.”  We all, of course,  still hope for a cure for cancer,  and new immunotherapies have given us more hope one will be found.  Yet heart failure, by contrast,  is a condition that isn’t cured by drugs, rather they are used to improve heart functioning for as long as possible.  Inevitably, the prognosis for heart failure patients has the upper hand, and the heart continues to weaken.  As I was assigned to explore questions for the category of “transitions” in a proposed model for heart failure care in Canada, I couldn’t help but think about the different implications what “transitions” between the way we’d used it a week ago at Gilda’s club and how, in this new effort to define a model of care for heart failure, a somewhat different meaning is implied.

Heart Failure, which I have, is a growing — and all too silent — epidemic according to Dr. Paul Fedak, a cardiac surgeon at the University of Calgary.  He explains: “Heart failure is the end result of all cardiac disease.  You get heart failure from everything that goes wrong with your heart–all roads lead to heart failure.”  While cancer remains the leading cause of death in Canada, heart disease is the leading cause of premature death for women.  In the US,  heart disease is the leading cause of death for both men and women with cancer running a close second.    Yet I cannot help but consider the number and variety of support programs for cancer patients that are far more developed, available and varied in both countries. than resources for heart disease patients.

I’ve been part of the cancer community for nearly twenty years, and gratefully so.  When asked to introduce myself on this morning’s call, I said that I was someone whose practice has been focused on individuals living with cancer by supporting their emotional, spiritual and creative well-being through encouraging the writing and sharing of their illness stories.  The thing is that the prevalence of a variety of supportive care programs, such as we have in the cancer community, are scant by comparison in the heart failure community, although there are some recent efforts, like the HeartLife Foundation of Canada, working to provide information and resources as well as create a sense of community through social media.

I have come to realize now that my work with cancer patients and survivors has been my greatest teacher in  understanding the impact of serious or terminal illness on our lives.  My personal experience with cancer was not a  life threatening one.  But the negative side effect of my treatment didn’t make itself known until my diagnosis of heart failure eight years later.   It wasn’t until that incident,  perhaps, that I understood how the fear of premature mortality that can inhabit anyone’s mind who is diagnosed with cancer.  Heart disease and stroke kill seven times as many women as breast cancer, for example, and in Canada, a woman dies of heart disease in Canada every 20 minutes! According to the Canadian Heart and Stroke Foundation, women are five times more likely to die from heart disease than breast cancer. But it turns out that there are issues in research and treatment of heart disease and failure when it comes to gender.  Two-thirds of heart disease clinical research still focuses on men.  “Women are under-researched, un-diagnosed and under-treated, undersupported and under aware,” according to Yves Savoie, CEO.   “It’s unacceptable, and the situation has got to change–we need to smash this glass ceiling.”

Ironically, my cardiologist believes my heart failure was likely the result of radiation therapy I received for DCIS in my left breast eighteen years ago.  I was given “gold standard treatment,” as my oncologist described it, yet I didn’t feel like I was truly a cancer patient.  And I wasn’t, not really, because a short time later, DCIS was reclassified to “pre-cancerous,” so it was only after I collapsed  while walking my dog in December of 2008 and was diagnosed with heart failure, that I truly understood the words of Alice Hoffman, novelist, reflecting on her cancer experience:        

“Cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.” (“Writers on Writing, “New York Times, August 2000).

Cancer treatments have gotten progressively more refined and better, and now with new advances in immunotherapy, there is even more reason to have hope for a cure.  Heart failure treatment continues to improve as well, although it isn’t about cure as much as it is in medication that can help to improve, for as long as possible, the heart’s functioning,  but the slope is still gradually downhill, and one’s “destiny” is never far from consciousness.

What strikes me now, as I continue to go to my cardiology appointments, have tests, receive new or increased medications and talk with my cardiologist (who is truly exceptional) is how solitary a journey having heart failure has felt like to me when I  consider the supportive care and community organized around  individuals living with cancer.

Or have I been in denial?  Perhaps, to some extent, but for the seven plus years I was being treated for this condition in California, other than one “educational” workshop on heart failure, which failed to do much to enlighten me, I never encountered or was told about other programs supportive to heart failure patients.  While I read research studies on heart failure, I do it in small doses, because my sleep is woefully interrupted by the facts and statistics.  Yet I am gratified to be pulled into action concerning the condition I and so many others have, or as my cardiologist would call it, “engagement.”  In fact, at my very first appointment with her back in December of 2017, she asked, “Do you want to just be retired or do you want to be engaged?”

I was perfectly clear.  “Engaged,” I said. “I have no idea what just being retired would look like.”

“Well, we’re going to get you engaged,” she said emphatically.

And she did.  Four months later, I sat in a group meeting on Heart Failure Access in Canada, all the while wondering how on earth I could possibly contribute to the discussion in any meaningful way.  Yet perhaps now I’m realizing I can be helpful in offering a patient perspective as the committee works  to define an optimal model for Heart Failure Care in Canada.  And that has a lot to do with the past 18 or so years of facilitating expressive writing groups for men and women with cancer.  A vocation, I’ve said, that has always been dear to my heart…little did I realize how much.

Perhaps all that I have learned, cherished and experienced as part of the cancer community, and most of all, from the honesty and vulnerability of those who have come to write and share their stories and lives with me in the writing groups, will help be me a better patient and participant in this community of cardiologists, nurses and heart failure patients.

And perhaps I won’t feel, as I have in the past, as lonely in the journey of being a woman living with heart failure.

My outlook is it’s not how long you live, it’s what you put into your life.Simon Morgan, 58, ( dilated cardiomyopathy;  heart transplant patient, UK)

Writing suggestions:

  • Cancer or any serious illness can be a great teacher.  What have you learned from cancer or other major hardship?
  • In your cancer experience, think about the kinds of support and help you were given.  What was most helpful?  Describe it and explore why you found it as valuable as you did.
  • Think about transitions–the many times in your life you’ve experienced that “in-between” period during change from one part of your life to another.  What meaning does “transitions” imply for you?  Why?