December 16, 2018: When Heart Failure is Too Much With Me

Perhaps it has something to do with the season–the holidays and the year drawing to a close have a predictable impact on my thoughts and mood.  There are memories of holidays past, of people and places I’ve loved, of family who are no longer in my life, and with them, feelings of nostalgia.  It’s a season of “good cheer,” but I’m aware that “what was” coupled with the reality of “what now is,” has dampened my holiday spirit.

Now.  These past few months have been more stressful than in years past, the result of my husband’s unexpected diagnosis and surgery for kidney cancer, his ongoing indecision about participating in a clinical trial for a new drug, and my ongoing life as a heart failure patient, with not only an increased number of doctor visits, tests and new medications, but to be honest, the willingness to be “engaged” in the larger issues of heart failure care and treatment, locally, provincially and nationally.  Heart failure, it seems, is a frequent companion in my days.

Two weeks ago, during my regular appointment with my cardiologist, I stood in the examination room, still recovering from an acute bout of sciatica and unable to sit comfortably.  I’d come prepared, a list of questions lying next to my handbag, the result of reviewing of my most recent blood tests and finding several of them labeled “abnormal.”  One in particular, my B-type natriuretic peptides (BNPs) had me concerned, and I needed to know what it meant.

Obviously,  I don’t have the training to interpret these tests or fully understand them, but my worry over BNP levels was triggered last spring, when, new to the Canadian heart failure community, I was invited by my cardiologist to attend the Canadian Heart Failure Society’s Heart Failure Update 2018 in Toronto, and asked by another to give a short patient story in her research session.  I had arrived earlier than planned and tiptoed into a morning symposium, already in progress, where a research study on the relationship between BNPs and patient prognosis was being discussed.  For high BNP levels I heard, the prognosis wasn’t good.   Since mine were, I knew, elevated, I  immediately thought, “I don’t need to hear this right now,” and quietly tiptoed out of the hall to review my notes for my talk, unwittingly leaving a trail of 3 x 5 cards from my seat to the door, which I discovered only when I finally sat and opened up my folder and found them missing. (As it turned out, I didn’t give the talk.  Just as I’d introduced myself, a heart failure patient, seated at the back of the room, collapsed, and the research session ended abruptly).  I walked to the subway station feeling utterly depleted and thinking, “This probably isn’t the best way for me to be engaged in the heart failure community.”

But back to my most recent appointment:  my cardiologist listened attentively as I posed my question on my blood test’ results and BNP levels before explaining to me how different medication affects different blood tests and so on.  I felt my eyes tearing up as I thanked her, apologetically saying, “A little research  in my hands isn’t necessarily good.”  She nodded, adding that they had yet to study the impact of patients’ reading and studying heart failure research.

“It’s hard sometimes,” I acknowledged.

“Have you written about it?” She asked.

“I’m trying,” I said, willing myself not to cry, “But I’m finding that to write from the personal experience of living with heart failure is far more challenging than I anticipated.

She nodded, then stood stepped toward me, saying, “I’m going to disturb your personal space and give you a hug.”

I needed that hug.   “Thank you,” I mumbled tearfully, embarrassed my emotions were so close to the surface.   I thought later about an 2011 Ted Talk, “Honoring the Stories of Illness” with Dr. Rita Charon,  and how she described that by listening deeply to her patients’ stories, she “could stand with [them] in the glare of…fear.”  In that moment, I’d felt truly heard and understood by my doctor.

But it got me to thinking.  Despite my initial hesitation, I’ve continued to become engaged in three different initiatives to offer the patient’s perspective on heart failure care.  I much prefer engagement to inaction, but what I didn’t anticipate at the time,  is the impact this engagement can have on my emotions.  I read to prepare for the meetings; I read the research to help formulate survey questions for a collaborative paper on heart failure care;  I scan the research again after every new test or medication.  And daily, thanks to technology, I record my weight, blood pressure, heart rate, symptoms and send them in to my cardiac care team via my iphone.   I have realized that all of it combined takes a toll on my mood, bringing up those shadowy elements of fear, mortality, and resulting in a much more somber, somewhat depressed me.

And yet… I’m fascinated.  But it’s not the research that inspires me,  not the workings of the physical organ I seek to understand, but rather, that second heart, the one some have called the “metaphorical heart,” the symbolic center of emotions and the “home of the soul, seat of love, place of wisdom and justice, and the symbol of our vitality.” (Stone, In the Country of Hearts, 1990; Carter, Our Human Hearts, 2006).

So  this past week, I finally turned away from the scientific to recalibrate and clarify my reasons for exploring my “lived” experience of heart failure in this blog. I began by rereading the beautiful and humbling book by Paul Kalanithi, When Breath Becomes Air (2016), whose young life and career as a neurosurgeon were cut short by lung cancer.  Kalanithi obtained masters’ degrees in philosophy and literature before returning to Yale to become a neurosurgeon, and thus, his perspective, the way in which he sought to understand his patients’ lives and his own life and death, were enriched, perhaps, by a broader perspective that medical training alone.  He wrote, “Like my patients, I had to face mortality to understand what made my life worth living… What makes human life meaningful?  I still feel literature provided the best account of the life of the mind, while neuroscience laid down the most elegant rules of the brain…and so it was literature that brought me back to life during this time…  “

His words resonated with me.  It is in literature–poetry and essay, memoir and fiction–that I find meaning in the deeper issues of life–and death.  It’s literature that offers me inspiration, a new perspective, words that express what I am experiencing better than I can say it myself.  Even today, in finally being able to write, however clumsily, about what these past two or three weeks have held–the doubts, fears, and questions, the searching and reading to try to make sense of it all–that is the way in which I continue to find the meaning, inspiration and words to express what I am feeling, what it is like to live a heart failure patient.

I feel lighter now as I complete this entry.  Revived.  “If I only had a heart,” the Tin man said in The Wizard of Oz…  Well, I have one, damaged and wearing down, but it still keeps me going, and more, my “second” heart captivates me.   I am, as Gail Godwin describes in her book, Heart (2010), fully enrolled “in the school of the heart.”  I doubt I will tire of this education anytime soon.

 

For Reflection and Inspiration:

Carter, Albert Howard.  Our Human Hearts: A Medical and Cultural Journey, 2006.

Godwin, Gail.  HeartA Personal Journey Through Its Myths and Meanings, 2001.

Kalanithi, Paul.  When Breath Becomes Air,  2016

Stone, John.  In the Country of Hearts, 1990.

 

 

 

November 26, 2018: Finding Hope in Heart Failure

If a man die, it is because death

has first possessed his imagination. 

 (William Carlos Williams, poet & physician)

I’ve been thinking about hope lately.  It dominates the conversation my husband and I have been having since his cancer diagnosis and surgery, intensified now by the possibility of his participation in a clinical trial of a new immunotherapy combination.  We weigh the statistics for a possible recurrence against the possibility of his living longer, perhaps cancer free and then we’re sobered by the list of potential side effects of the treatment, some that are serious and possibly permanent.  Still we hope, just the cancer patients who join my writing groups do.  The hope for a cure to cancer is never far from their minds, to hear the words, “cancer free” or at the very least, be granted a period of remission.

Yet the hope they have during their cancer treatments is in sharp contrast to being diagnosed with heart failure, a condition which has no cure and brings with it the expectation of worsening heart function over time.  I’ve thought about how, as a heart failure patient, my hope is modest by comparison.  It is buoyed by things like a change in medication that might lessen the strain on my weakened heart or the continuing vigilance of my ICD to manage any episodes of atrial fibrillation or ventricular tachycardia.  But the knowledge of heart failure’s trajectory, a slow downward progression, is never far from my consciousness, and for now, at least, there is no possibility of a cure on the horizon.

Despite advances achieved in medical management, HF continues to present challenges in hospitalization, morbidity and mortality rates. Varying with the severity of the disease and the underlying etiology of HF, the illness trajectory can be a rapid downward spiral with no hope of cure.  (Rustoen T, et al., “Hope in patients hospitalized with heart failure.” Amer J Crit Care. 2005;14(4):417–425)

As early as 1986, a study conducted in a Canadian heart failure clinic examined hope among heart failure patients, noting that while “substantive articles were found in the nursing literature examining the concept of hope with terminal and critical illness, cancer, HIV/AIDS, spinal cord injuries, and the homeless…, there is a paucity of data about the construct of hope in people with HF over the past two decades.”   The study was the first to examine hope in adults with HF, and the researchers found that adults who maintained “life involvement” despite the increasing physical limitations experienced as heart failure patients, were also the most hopeful.  (Rideoout E, et al.,  “Hope, morale and adaptation in patients with chronic heart failure.” J Adv Nurs. 1986;11(4):429–38)

Their findings were echoed  in a 2005 study of hope among hospitalized heart failure patients as the researchers concluded that “Adaptation to a life-threatening illness may induce a “response shift” that causes such patients to have more hope than the general population… How the patients judged their health and expressed satisfaction with their lives influenced their hope.  (American Journal of Critical Care. 2005;14:417-425)

Hope is something we all need at different and difficult times in our lives.  It plays a major role in our emotional and physical healing, whether from tragedy, loss or serious illness.  Siddhartha Mukherjee, physician and author of the Pulitzer Prize winning The Emperor of All Maladies:  A Biography of Cancer (2011) defined hope as a “vital organ.” It gives cancer patients added life force, and in the world of serious illness,  loss or suffering, hope may be one of the most powerful medicines we possess.

Despite the severity of heart failure and its growing incidence around the world, we are not without hope. There are numerous strategies to help people with heart failure live well, live longer and, in the future, even have success preventing heart failure in the first place, or preventing its progression and complications.  Indeed, with advances in regenerative medicine, there may even come a day when damaged and dysfunctional hearts can be rejuvenated and restored.  —Ted Rogers Centre for Heart Research

What is hope?  It’s an expectation that something good can happen in the future—and in the midst of suffering or sorrow, we sometimes forget that hope can be present in many different aspects of  our lives.  Anne LaMott’s 2013 book, Stitches: A Handbook on Meaning, Hope, and Repair, illustrates how hope exists–even in a world punctuated by vitriolic political discourse, frequent reports of random shootings, car bombs, wars, natural disasters, hunger or life-threatening disease. ” Hope is a conversation,” LaMott states.  “What allows us to go on and find those small moments of goodness, are to be found in “attention, creation, love, and,” she adds with incomparable wit, “dessert.”

With hope, there is healing, something that is often simplified in the way we think of it.  It’s more than medicine and treatments.  Healing, in the truest sense of the word, is the process of “becoming whole,” whether from a natural disaster or a serious, even life threatening illness.  It is a multi-faceted process of transformation.  There is a strong connection of mind and body in healing, and hope plays a central role.  In the studies that have explored the impact of hope, researchers conclude that hope helps decrease patient anxiety and increases quality of life. Even among the terminally ill, hope is an essential resource.  It helps us cope during times of intense physical and psychological distress.

“The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.” 
― Barbara Kingsolver, Animal Dreams 1990

What gives me hope?  Living as fully and as presently as I can.  It’s in those times I stop and remember the “small moments of goodness” in my life, things that raise my sagging spirits after another round of tests in the cardiac clinic or in the discussions of next steps in my husband’s cancer treatment.  Hope sometimes seems elusive until I experience the little “desserts” in my life that LaMott describes: a hug from a grandchild, dancing (badly) and laughing each week with “The Vintage Dancers,” singing together with a random crowd of people at an evening of “Choir! Choir! Choir!” or walking with my dog through the park and watching her unflagging hope of catching a squirrel (she never does, but her hope is never diminished).  In those moments, my own hope expands, and I’m reminded of the resilience of the human spirit, even my own.  Perhaps that’s why we often say that “hope springs eternal.”

 

HOPE

Hope

is the belief

that one hand

reaching to another

can eventually

touch the moon,

allowing the light

to guide us

through the night.

(By Nicolas Mazza, Editor, Journal of Poetry Therapy)

 

Writing Suggestions:

  • Explore what  hope is in your experience of  living with heart failure:
    • Where do you find hope?
    • What gives you hope?
    • What weakens it?
    • What do you hope for?

November 4, 2018: Medicine & Metaphors: Communicating Illness

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.–Susan Sontag, Illness as Metaphor, 1978

Poetry and medicine share a long history, dating back to the Greek god Apollo, who was responsible for healing and poetry.  Today, The use of metaphor, a poetic tool and figure of speech that compares things seemingly unrelated is also common in illness and everyday life.  Think of how we use sports metaphors almost unconsciously to describe daily life.  In the workplace, you strive to be a “team player” or be encouraged to “run with a good idea.”  In a budding romance, a boy might “make a pass at someone,” or in an emotional argument between two people, one is the other he is “way out of bounds.”

There’s little doubt that metaphors are visual and illustrative, but they can also run the risk of creating stereotypes and confusion, even becoming clichés.  Some, like the sports and military metaphors so common in everyday language are frequently used to describe one’s medical experience.  Jack Coulehan, MD and Poet,  in a  2003 article, discussed some of the most prevalent metaphors used in medicine, among them, parental metaphors (“She’s too sick to know the truth”), engineering metaphors, (He’s in for a tune-up”), and the military metaphor,(“the war on cancer”).

In “The Trouble with Medicines’ Metaphors,” appearing in a 2014 issue of The Atlantic, author Dhruv Khullar, MD, wrote:

The words we choose to describe illness are powerful. They carry weight and valence, creating the milieu in which goals of care are discussed and treatment plans designed. In medicine, the use of metaphor is pervasive. Antibiotics clog up bacterial machinery by disrupting the supply chain. Diabetes coats red blood cells with sugar until they’re little glazed donuts. Life with chronic disease is a marathon, not a sprint, with bumps on the road and frequent detours...  Military metaphors are among the oldest in medicine and they remain among the most common. Long before Louis Pasteur deployed imagery of invaders to explain germ theory in the 1860s, John Donne ruminated on the “miserable condition of man,” describing illness as a “siege…a rebellious heat, [that] will blow up the heart, like a Myne” and a “Canon [that] batters all, overthrowes all, demolishes all…destroyes us in an instant.”

As Khullar points out, “…we’ve internalized these metaphors, so much so that we often may not recognize how they influence us.”  And while Susan Sontag famously argued in her book, Illness as Metaphor (1978) ” that illness is not a metaphor, and [that] being ill—is one most purified of, most resistant to, metaphoric thinking,” the fact is that metaphors can and do help us understand one another’s experience.  They are visual, visceral and provide a shorthand route to our emotions.  They offer a way to make sense of the emotional chaos that often accompanies a diagnosis of serious illness or physical condition.  Metaphors help to communicate our feelings and experience to others, and in turn, doctors use metaphors to help patients understand the ramifications of their illness. A 2010 study published in the Journal of Palliative Medicine, found that “Physicians who used more metaphors were seen as better communicators. Patients reported less trouble understanding them, and felt as though their doctor made sure they understood their conditions.”

Metaphors get our attention.  They give us a vivid way to communicate and understand the experience of illness.  For example, consider the poem, “The Ship Pounding,” by former U.S. poet laureate, Donald Hall.  The reader is offered a glimpse into his feelings and experience of having his wife, poet Jane Kenyon, frequently hospitalized in the final months of her struggle with leukemia.   He uses a powerful visual image of a ship filled with ill passengers, heaving in rough waters, which helps the reader see and understand his experience.

The passengers on this voyage
wore masks or cannulae
or dangled devices that dripped
chemicals into their wrists,
bur I believed that the ship
traveled to a harbor of breakfast,
work, and love.
I wrote: “When the infusions
are infused entirely, bone
marrow restored and lymphoblasts
remitted, I will take my wife,
as bald as Michael Jordan,
home to our dog and day.”
Months later these words turn up
among papers on my desk at home,
as I listen to hear Jane call
for help, or speak in delirium,
waiting to make the agitated
drive to Emergency again,
for re-admission to the huge
vessel that heaves water month
after month, without leaving
port, without moving a knot,
without arrival or destination,
its great engines pounding.

(From:  Without, 1998)

Anatole Broyard, whose book, Intoxicated by My Illness and Other Writings on Life and Death (1993),  conveyed his experience of terminal prostate cancer, he wrote:

Always in emergencies we invent narratives. . . Metaphor was one of my symptoms.  I saw my illness as a visit to a disturbed country. . . I imagined it as a love affair with a demented woman who demanded things I had never done before. . .   When the cancer threatened my sexuality, my mind became immediately erect.

Arthur Frank, Canadian sociologist and author of At the Will of the Body:  Reflections on Illness (1991), his memoir of his illnesses of heart attack and  cancer, described his illness and recovery as a “marathon.”  Frank was a runner, and the physical and mental demands of the marathon were apt comparisons to describe his experiences of illness.

Kat Duff, author of The Alchemy of Illness, (1993), was diagnosed with chronic fatigue and immune system dysfunction syndrome.  She explored illness narratives as a way to understand the broader nature of her illness, comparing it to a landscape–a wilderness, or coral reef–describing her process of regaining health as an adventurous voyage through it.

Yet as I’ve also discovered in my ongoing search for the use of poetry and metaphor in heart failure and disease, there is yet, according a 2018 article “Making the Invisible Visible,”  by Biglino, Layton and Associates,    “a limited use of metaphors [in heart disease and transplantation] compared with other conditions such as cancer or HIV/AIDS…but generally illnesses are not metaphor free, despite technological advances.  Biomedical narrative is limited in its power to convey full meanings of illness experiences and treatments, hence the need to express nuances of illness experiences through metaphors.”

Metaphors–so common in poetry and the arts–are invaluable in helping us to communicate and understand the experience of illness.  They allow doctors to develop a common language with patients, and they give those of us living with serious or chronic heart conditions a way to express what we feel and experience.  As Anatole Broyard, commenting on his own illness experience, said:  “Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers.”

Are you aware of the metaphors you use naturally to describe what it’s like to live with heart failure or another serious heart condition?  Here are some suggestions to get you writing about them:

Writing Suggestions

  • Think of how you describe your condition to others. Are you aware of the metaphors that naturally come to mind?  Explore these.  What images do they convey?  How do they help you communicate your condition to others in your life?
  • Stuck? Begin with a phrase such as “Heart Failure is like a…” and finish the thought, noting what image or word emerges.  Try listing several.  Then, take the one that is most compelling for you and explore it further in writing.  Remember, write quickly, without editing.  Set the timer for five or ten minutes and keep your pen (or fingers) moving.
  • Once you’ve finished, read over what you’ve written.   Are there any surprises?  Did you discover any unexpected metaphors?  How have your metaphors helped you to explain your experience of illness to others? Describe one or two instances.
  • Does your physician or cardiologist use metaphors to help you or other patients understand the full extent and prognosis of heart disease and failure? What kinds do you hear most often?
  • You may want to go deeper in your writing.  Our metaphors can inspire a poem, such as Donald Hall’s, or a story that describes and communicates your illness experience.  Let your metaphors be the inspiration for a poem or story.

October 22, 2018: If You Don’t Tell Your Story, Who Will?

This past August, when I first began writing this blog, I invited readers similarly diagnosed to write about their experience with heart failure–and other serious heart conditions.  Whether my attempts to express this experience have motivated anyone to write, I have no idea, but I am hopeful that some of you who follow this blog are trying your hand at writing about your experience.  As someone who writes daily,  written myself through more than one life crisis, and has led therapeutic writing groups for cancer patients and others suffering from loss or other difficult life events for nearly twenty years, writing as a way of healing is second nature to me.  Yet I realized, when I was invited to speak at the Canadian SADs Foundation (Sudden Arrhythmia Death Syndromes) this past Saturday that writing as a way of healing is relatively new to many who are dealing with heart failure, SADS, and other serious heart conditions.

It was the first time I’ve spoken to a group of family members and patients who are living with a serious and life-threatening heart condition, despite the ten years since I first collapsed on a neighborhood sidewalk, diagnosed with heart failure and had my first defibrillator implanted.  I was one of several presenters, including three cardiologists, a former athlete and patient advocate living with SADS.  As I began speaking, I explained what I do, saying that I also work in the realm of the heart,  but not the vital organ housed inside our bodies, rather, the “second” heart, the “fraternal twin” of the physical heart and symbolic center of all we feel.   I help people write and express what they carry in their second hearts.

What initially motivated me to begin writing about living with  heart failure was inspired by becoming aware of the gap in supportive programs and services between cancer patients and heart patients.   I’ve been part of the cancer community for nearly 20 years, accustomed to the generous array of supportive programs for cancer patients.  My expressive writing workshops are one of those many programs.  Here, in this blog, “Musings of the Heart,” I’ve begun to  write, in part, to understand the feelings and fears that rise up unexpectedly and how this condition affects my life.  But I also began this blog as I became involved in offering a patient perspective to Canadian Heart Failure care initiatives,  hoping I might encourage others living with similar or more serious heart conditions to write from their own experiences.  The patient’s perspective, in matters of the physical and symbolic heart, is so very important, yet I find it far less prevalent or written about from a personal perspective than I have in the cancer community.

Expressive or therapeutic writing, which defines the workshops I lead for people with cancer and other serious illnesses, has the greatest healing impact in the realm of our “second” hearts.  By writing honestly and deeply, we begin translating into words the strong and often confusing or chaotic emotions we experience in times of trauma, sudden and unexpected losses, or the diagnoses of a  life threatening illness  into words, and that is one of its healing benefits..  Healing begins as we get those emotions expressed on paper, “exorcising” them from inside our bodies so we may begin to understand and make sense of them.

That’s the way writing often starts, a disaster or a catastrophe…by writing I rescue myself…it relieves the feelings of distress. –William Carlos Williams, physician and poet

People come to my workshops and frequently apologize, “I thought this sounded interesting, but I’m not a writer.”  I offer reassurances, telling them this is not a writing workshop where your words will be judged or critiqued.   What matters is that you write, honestly and deeply, not worry about form, grammar or spelling.  Then I invariably offer the definition of a writer by poet William Stafford:  “A writer is someone who writes.”  I also may offer the advice of writer Maxine Hong Kingston given to the war veterans who attend her writing workshops:  “Tell the truth.”  They do, and time and time again, people react with surprise as they read aloud, saying “I had no idea I wrote that!”  Tears often come without warning as they “hear” what they have actually written.

“Writing is a courageous act,” prize winning author of The Alchemist, Paul Coelho said.   We put ourselves, our lives, on paper.  Others may interpret what we’ve written from their own experience, yet to write honestly and authentically requires we have the willingness to go deep and tell the truth of our experience.  That willingness to risk and plunge into our own darkness is also one of the characteristics of writing that is most healing.

Why write?  Turning your experience into poems and stories is a powerful way of helping you heal from the shock, trauma and upheaval of being diagnosed and living with a serious illness or life threatening condition.  Your stories matter.  We find hope and wisdom in one another’s stories.  We feel less alone when we share our experiences with others similarly diagnosed.  It’s through story that we make sense of our lives, reclaim our voices, and even discover our words can touch others’ hearts.

Through the exchange of stories, [you] help heal each other’s spirits.  –Patrice Vecchione, Writing and the Spiritual Life, 2001

In the writing workshops I’ve led with cancer patients and others over the years, while that moment of diagnosis, of shock and disbelief,  is where everyone begins, it’s in their shared stories that they discover they aren’t alone. Grief is softened, transformed, and healing begins.   Stories are also the currency to help us communicate our illnesses to our physicians and have the impact on our lives understood.  “Their stories, yours, mine,” William Carlos Williams, physician and poet, advised a medical student, “it’s what we carry with us on this trip we take.  We owe it to each other to respect our stories and learn from them.”

Writing out of pain and struggle has many health benefits, as the research has shown us, but there’s tacit acknowledgement in my writing groups that living with a serious illness or condition is only one part, not the whole book of one’s whole life.  Writing heals, yes, and it was something acknowledged by many great novelists and poets long before psychologists began conducting research studies.

She’s lived in my memory for sixty years.
Death steals everything except our stories.

–Jim Harrison, “Larson’s Holstein Bull,” In Search of Small Gods, 2009

Stories are uniquely human.   In writing and sharing them, we discover new insights and meaning.  Our stories communicate who we are and why our lives matter.  And stories are legacies:  a way of remembering and being remembered.     Years after a workshop I’ve given or friends and family members have passed on, I recall the stories of those who wrote with me, the people who were once a part of my life.  In their stories, they remain alive in my memory, and I am all the richer for it.

Your stories matter,  “Storytelling is human,” Dr. Thomas Houston, University of Massachusetts Medical School,  said in a 2011 New York Times article.  “We learn through stories, and we use them to make sense of our lives. It’s a natural extension to think that we could use stories to improve our health.”

Siddhartha Mukherjee, oncologist and author of  The Emperor of All Maladies:  A Biography of Cancer,  the 2011 Pulitzer Prize winner of general nonfiction, also honored the importance of cancer patients’ stories (and the same can be said about heart failure and disease) stating:    …the story of cancer–isn’t the story of doctors who struggle and survive, moving from institution to another. It is the story of patients who struggle and survive, moving from on embankment of illness to another. Resilience, inventiveness, and survivorship–qualities often ascribed to great physicians–are reflected qualities, emanating first from those who struggle with illness and only then mirrored by those who treat them…

Think about it.  Those of us who are living with heart failure and other heart conditions have an important role in creating greater understanding about heart failure and disease.   Your story matters.   Besides, if you don’t tell your story, who will?

Beginning a Healing Writing Practice:

  • Choose a time in your day that allows you to have a period of time alone and a comfortable place to sit and write.  Try to write three times a week.
  • A spiral bound notebook that is reserved for your writing is recommended.  That way, you can go back and re-read and reflect upon what you have written.  If you prefer a computer, that’s fine too.
  • Start small.  Set the timer for 15 minutes; keep your pen moving.  Write what matters to you–at that moment–and just keep writing.  At the end of the allotted time, re-read what you’ve written.  Underline words or phrases that stand out.  Try beginning with one of those phrases the next day you write.
  • We all have internal critics.  Banish yours for the 15 – 20 minutes you write.  Don’t censor yourself.  “Spend it all,” as writer Annie Dillard advised.  Your writing is for you.
  • Whatever form is most natural for you, use it, whether poetry or prose, story or personal essay.   Sometimes I’ll write a short haiku (17 syllables, 3 lines) to get started.  Sometimes I launch into what happened the day before or something that someone said.  Sometimes I just begin with the weather.  But I keep writing and within minutes, I’m in territory that matters.
  • Anything can inspire you to write:  the favorite coffee or tea cup, the trees outside your window, an interesting looking person walking along the streets.  I carry a pocket sized notebook with me whenever I’m heading to the cardiac clinic for an appointment.  Anything can act as a trigger for writing.
  • Use one of the prompts I offer on this blog site as inspiration to get yourself writing.

Some Writing Prompts to Help You Begin:

  • Begin with the words:  “When the doctor said…”
  • Divide a page into two colums:  Before Heart Failure/After Heart Failure.  Write lists for each.  From those create a poem or narrative.
  • Begin with “I hope for…”
  • Begin with “I am most grateful for…”
  • Use this line from a poem by Naomi Shihab Nye, “Before you know kindness, you must lose things…”
  • Write about fear,  about anger, disbelief or grief
  • Let your heart speak…

 

For October 9, 2018: When the Doctor Said…

He said it doesn’t look good
he said it looks bad in fact real bad.

(From:  “What the Doctor Said,” by Raymond Carver; In:  A New Path to the Waterfall, 1989)

They were words I never thought I’d hear:  “You have heart failure.”  Heart what?  I couldn’t comprehend what the doctor was saying.  I first heard the words as I lay in the hospital bed, under observation for three days after suddenly collapsing as I was walking the dog.  When I’d regained consciousness, I was surprised to find I still had the leash in my hand, but lying face down, on the pavement, blood dripping from my chin.  Disbelief accompanied me as I made my way back to the house, concerned I had a meeting to go to in a half hour and couldn’t seem to stop the bleeding.   On impulse, I called my husband at his office and said, “The weirdest thing happened.  I apparently fainted while walking the dog.”

His response was immediate: “Call the doctor!”  But I shrugged off the need to call her.  I had just had my annual  physical exam two weeks earlier, and when I mentioned some brief spells of light-headedness, she was unconcerned, telling me most likely I was dehydrated.  Apparently, as we found out a few days later, it wasn’t dehydration at all.

I was ready to hang up the telephone, telling my husband I’d call the doctor after my meeting when I felt faint again and mumbled “oh, oh,” as I felt my knees buckle, and the floor rushed up to meet me.  I came to as I heard the telephone ringing moments later.  My husband had called 9-1-1, and the EMTs were on their way.  Before I knew it, I was on a stretcher, loaded into the ambulance, and transported to the Emergency department where I was subsequently put under observation for three days, monitored around the clock and tests were administered.  Even then, when the cardiologist stood at my bedside and said, “You have heart failure,” I felt shock and disbelief.  As cardiologist John Stone, MD, notes in his book, In the Country of Hearts (1990), “It’s easy not to think about the heart until trouble arises.” (p. 3)

The truth is that it’s not easy to accept the reality of any life threatening illness or bodily betrayal until the shock of a hearing a doctor’s diagnosis.   For years, I’ve invited the cancer patients in my writing groups to write about the moment they first heard a doctor confirm they had cancer.  It’s usually one of the very first writing prompts I offer in those workshops. The writing that emerges from that first exercise is always vivid, descriptive and immediate.  Those seconds in which a physician delivers words that change your life in an instant can still evoke strong emotions as you recall it months or even years later.

I heard the words, “it’s cancer,” or some version of them, over eighteen years ago.  I’d gone in for my annual mammogram, but it quickly became something more than routine as the technician kept returning to the room to say, “I just need to take a couple more images.”  I remember it well, even though my diagnosis was not life threatening, not the sort that sends you home thinking about mortality.

But I got off easy.  Ten days ago, my husband and I sat together in a surgeon’s office, and I heard the words again, only this time, the surgeon’s words were directed to my husband:  “Stage 3.  Kidney cancer.”  Surgery in just nine days to remove one kidney and determine if the cancer has spread as, we could easily tell, he suspects.

I listened, intent on capturing all that was discussed in my notebook, turning to study my husband’s face as together, we looked at the CT scan and listened to the surgeon’s explanation.  At one point, I felt the rush of emotion and forced myself to not cry, so that I could stay focused on how J. was receiving the news.  I remembered Joan Didion’s words, “Life changes.  Life changes in an instant.”  And so it was changing, right then, in a brightly lit examination room of a surgeon’s office.

You want to forget, for things to be normal, the way they were… It’s like stepping into a swift river; the current of the ordinary grabs you, and before you know it you’re being buffeted against the rocks, on your way over the falls as you watch the shore recede.   It may all be over so soon, you worry in midstream, you won’t have time to do anything at all.–(D.L., cancer patient from a Writing Through Cancer workshop exercise)

For the past several months, our focus has increasingly been on my health–my heart failure and treatment– likely the result of damage to my heart from the radiation I had eighteen years ago for that very treatable breast cancer.  And my husband has always been remarkably healthy.  His father, a physician, died just days before his 99th birthday, and we always assumed that J. had his father’s genes and would likely live as long or even longer.  Maybe he will yet; maybe not.  As John Stone wrote in a poem, “Health is whatever works/and for as long.” (From; “He Makes a House Call,” In:  Music From Apartment 8,” 2004)

I thought about Stone’s definition as we made our way home through the afternoon traffic. Health and mortality were playing in my mind. “I always thought I’d be the first to go,” I said.  “You know, the issues with my heart…”

“Maybe not,” he murmured.

“Well,” I quoted former comedienne, Gilda Radner, “‘It’s always something,’ isn’t it?”

“It is,” he replied, but I didn’t expect this.”

“Nor did I,” I said, adding, “But I guess we’re at the stage in life when “somethings” like this are not unusual.”

“I guess so,” he said quietly, and we continued home, negotiating the traffic in relative silence, both of us still feeling the disbelief that accompanies such diagnoses.

It was, for me, another reminder of how we have, in essence, two hearts, the literal one, pumping blood, giving life, and its “fraternal twin,” the metaphorical one, the one long considered as the “seat of emotions” (Stone, p. 5 – 7).    And my metaphorical heart was aching.

I wrote… to remind myself of the beauty of life, something that’s all too easy to overlook during the crisis of illness or loss… I forgot that our lives are made up of equal parts sorrow and joy, and that it is impossible to have one without the other.  This is what makes us human…I wrote to remind myself that in the darkest hour the roses still bloom, the stars still come out at night.  And to remind myself that, despite everything that was happening to me, there were still choices I could make.  (From the preface, Survival Lessons, 2015, by Alice Hoffman)

Writing Suggestions:

  • Write about the moment you were first diagnosed with heart failure. Try to recall as much of the detail of that moment as you can:  The moments before the diagnosis was given, the room, whether you were sitting, lying down or standing, the quality of light, the doctor’s face, the words given to you, and what you were feeling.
  • John Stone said, ” It’s easy not to think about the heart until trouble arises.” Use his words to begin a story or a poem about your heart.
  • How has heart failure affected your outlook on life and mortality? Explore one or both.

 

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?