May 4, 2019: This Heart of Mine

…it’s not easy to think about the heart unless trouble arises.–John Stone, MD

This past Wednesday I began another expressive writing series at Gilda’s Club, an organization founded in memory of comedian Gilda Radner to provide support and services to people living with cancer.  The workshops, which I began nearly 20 years ago, inspired by the research on writing and health from psychologist James Pennebaker, is an 8 week series designed to encourage participants to write and share their stories of cancer.  At each meeting, I offer writing prompts and suggestions aimed at different aspects of living with cancer.  In a typical first session, such Wednesday’s, we begin with the moment of diagnosis, of becoming a cancer patient.  The two different prompts I used in our initial meeting were:  1) describe the moment you first heard “you have cancer,” and 2) when you think of cancer, what are the metaphors you use to describe it?”

It was only later, after the session ended, that I thought more about the images and words they used to describe cancer–not just their metaphors, but how differently their words are than those I use to describe heart failure.  What I feel for my damaged heart can only be considered as protective, even tender.  Not so with my group members’ feelings about cancer.  Their metaphors had no tenderness in them.  For example, cancer was compared to a rotting fence, a brick, a death sentence, an evil invader, a boxer in a fight for life, a fast growing weed, even a cockroach.  Not surprisingly, the most prevalent metaphor used in the cancer literature is still one of battle–a fight against the disease.

But the heart is no invader, and the use of metaphors in heart disease, transplant or failure, as researchers Biglino, Layton and associates discussed, are limited when compared to other serious illnesses like HIV/AIDS or cancer.  As cardiologist Sandeep Jauhar, MD describes in his book,  Heart:  A History (2018), our “second” or metaphorical heart has long been associated with feelings, considered as the locus of emotions even across different cultures. While science has ultimately corrected those misassumptions, these earlier connotations continue to influence the way in which we talk about our hearts.

I turned again to The Cancer Poetry Project, two favorite volumes of poetry written by patients, caretakers and medical professionals and in some poems, found metaphors of battle, cancer as enemy,  spy,  shark, or an invader, among others.  Metaphors are, as many have pointed out and the literature confirms, commonly used in the way we talk about cancer.  But in matters of heart disease and failure, even after scouring LitMed, NYU’s Literature, Arts, Medicine Database for relevant poetry and literature, I was disappointed to find scant offerings compared to cancer.  I returned to some of the books on the human heart that have recently taken up residence on my bookshelves.  Again, I was struck by the paucity of metaphors to describe our life-giving organ.  For example, Albert Carter III, writing in Our Human Hearts (2006) described the contemporary view of the heart, as ” a pump, and one worth caring for” p.35), while other authors referred to it as an engine.

I didn’t think much about my heart until after I was hospitalized and diagnosed with heart failure in 2008.  Since then, I’ve also compared my heart to an engine,  the life-giving one that one keeps all systems running.  It’s a real workhorse, hard working, steady and, for at least two-thirds of my life, reliable.  When I think of my “engine,” I recall my high school sweetheart’s old Model A Ford, a real jalopy by today’s standards.  He nursed and tinkered with the old engine, determined to keep it running until we’d graduated and left for university.  In some ways, I consider my medications,  daily recording of my vitals, even the bothersome bulge of the ICD below my collarbone are the regular tinkering of my heart, my engine, designed to keep it running for as long as it can.

The tenderness I feel for my heart is expressed in the way I talk it.  Yes, you read it right:  I talk to my heart.  In my cancer writing groups, I often prompt the members to address their cancer as if it is a character.  They do, and the writing is always descriptive and strong,  but more than talking to their cancer,  they talk back to it, as if addressing a bully.   And there is such intensity in their words that you think they just might send cancer packing–and soon. 

I have never “talked back” to my heart; I feel no fury toward it.  I’ve only talked to it–and with a great deal of compassion and tenderness.  It happens almost unconsciously.  If I am short of breath or my heart rate increases , thumping loudly against my chest after walking uphill or climbing the four flights of stairs to my daughter’s apartment, my hand reflexively moves to my chest, the place where my ICD bulges beneath the skin, and I pat it gently as a mother might soothe her crying infant and quietly say,  “Slow down a little.”  “It’ll be all right.”

There are times I wonder if I might have been responsible for my heart’s failure.  Besides the radiation therapy to my left breast twenty years ago, my heart and soul have  been through a lot of stressful wear and tear–a series of difficult and extremely emotional events that occurred from my 20s through my 50s, all involving unexpected and significant losses, sorrow and tragedy–events I have described as truly “heartbreaking.”  Little did I know how apt the adjective was at the time.   As Dr. Sandeep Janhar said, “Even if the heart is not the seat of emotions, it is highly responsive to them…a record of our emotional life is written on our hearts…The biological heart is extraordinarily sensitive to our emotional system–to the metaphorical heart…” p. 23).   Perhaps it’s little wonder that I sometimes feel as if I could have somehow prevented my heart failure, whether that is realistic or not.  And again, my hand moves to my chest, and I whisper, “I’m sorry,” to my battered and weary heart.

Just as heart failure does, cancer brings us face to face with the prospect of early mortality.  Fear, in those first stressful months after a diagnosis, is a constant companion.  And yet, in cancer, unlike heart failure, there is hope.  With the continuing medical advances in cancer treatment, many  patients now enjoy long periods of remission, some even declared “cancer-free.”

Heart failure, by comparison, doesn’t come with that kind of hope, save for those who undergo heart transplants.  I’m not a transplant candidate, but it took me a long time to accept that heart failure was a progressive condition. When I finally read the statistics, faced the facts and the gradual decline in my heart’s functioning, I was dogged by a persistent shadow of fear and depression for months.  Finally, I turned to what I have always done in times of upheaval: I began to write, attempting to unpack and understand the underlying fears and emotions by making them visible on the page.  It helped, although I still don’t find it easy to do.

I now think of myself as living well with heart failure.  Thanks to my cardiologist and the medical team at the Peter Munk Cardiac Center, new medications, their iphone app “Medley,” which I use to record and report my vitals each day, I don’t fear heart failure in the ways I once did.  Instead, I focus on the here and now.  I cheer my heart on as my blood pressure and heart rate remain at a consistent level, motivating me to continue living a heart healthy lifestyle.  I try to live as fully and presently as I can.

In fact, my heart health regimen has given new meaning to the flyrics of a favorite old Johnny Cash song.  Cash apparently wanted to write a song that said “I’m going to be true not only to those who believe in me and depend on me, but to myself and to God — a song that might give courage to others as well as myself.” (From Johnny Cash, Man in Black, 1975, pp. 87-88).  His song has inspired many people from all walks of life over the years.  For me, the song serves as a kind of promise to my heart, one I frequently sing aloud (much to the consternation of my husband).

I keep a close watch on this heart of mine

I keep my eyes wide open all the time

I keep the ends out for the tie that binds

Because you’re mine, I walk the line…

(From:  “I Walk the Line,” written by Rodney Crowell and Johnny Cash, 1956)

Well, I’m walking the line all right.  I’ve learned to say “no” when I need to conserve energy; I act on my cardiologist’s advice, get a good night’s sleep, record my vitals, and take my medications twice daily as prescribed.  I have more routine in my life now than I once did, but it’s probably healthier.  I begin my day with quiet, a routine of writing and a regimen of Pilates stretches.  I eat a heart healthy diet, walk as much as I can, occasionally swim, and practice simple meditation when worry or stress creeps up on me.  I am intent on doing all I can to keep this heart of mine, this engine of life, going for as long as possible.  My heart seems to agree.  After all, we are in this together.

 

Writing Suggestions:

  • When you think of your heart, what images or descriptors come to mind?  What metaphors do you use, consciously or unconsciously, to describe your heart?
  • Consider John Stone’s observation that it’s difficult to think about the heart until it’s in trouble.  Before heart failure, did you think much about your heart?  If so, in what ways?  After heart failure, what changed in your feelings or thoughts about your heart.
  • If you “talked” to your heart, what would you say to it?

 

March 30, 2019: In the Kingdom of the Ill

In a few days, my husband and I will board an Air Canada jet, crossing the Pacific, international borders and time zones as we travel to Okinawa, Japan, where my younger daughter and her family live. Thanks to my adventuresome daughters, I’ve visited many more foreign countries than I might have otherwise. Despite this, living with heart failure makes me a little more anxious about the long flight than I once was.   I seem to vacillate between excitement and nervousness with wild abandon.

I’m reminded of other border crossings we traverse in our lifetimes. Some of them are physical, like the border between countries, others are metaphorical, like crossing from youth into adulthood, graduate to professional, single to married, employed to retired.  The list of transitions, of borders real and symbolic, is endless.  Some crossings are welcomed; others, in the moments when the landscape of your life shifts without warning from familiar to unfamiliar, are not.  In those instances, you land in an unknown territory where what you took for granted, what you thought of as normal, are forever altered.  Not only is it disorienting, the experience can be frightening and lonely.

It’s the same strangeness, the unreality you experience after an unexpected and sudden death of a loved one, or hear your doctor say the word, “cancer,” or just days after unexpectedly collapsing on a walk, you lie in a hospital bed listening to a cardiologist’s use words like “heart failure, atrial fibrillation, ejection fraction, ventricular tachycardia, ICD” and struggle to make sense of them.  It’s those moments, when your life abruptly changes in ways you never imagined, that are burned into memory.

Looking back, perhaps there were warning signs, but ones you ignored or passed off as trivial.  Maybe you were sent for more tests, further consultation, or hospitalized for observation, but even then, you try to push aside the niggling worries.  “It’s probably nothing,” you tell yourself, but then all that changes as you watch your doctor’s face and hear, in those unreal, slow motion moments, “I’m sorry, but…”  And your heart already knows what the brain is trying to process as you’re thrust across the border into what writer Susan Sontag once named “The Kingdom of the Ill.”

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. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. (Susan Sontag, “Illness as Metaphor,”  The New York Times, Jan. 26, 1978)

Being diagnosed with any serious medical condition casts you into unfamiliar and treacherous terrain.  You feel disoriented, as if your body has betrayed you.  Maybe you’ve been given a roadmap upon entry, an informational pamphlet that defines your path of treatment,  but it can seem like a maze of different choices, ones that branch into multiple—and equally confusing—pathways.  Worse, your diagnosis is accompanied by strange sounding terminology, difficult to decipher and understand, leaving you feeling even more overwhelmed and confused.  Your life is suddenly turned upside down, and you confront a new reality you feel ill prepared to navigate.  This is the foreign territory of the body’s betrayal. Nothing seems quite real, and you feel lost and alone.

There’s a moment, not necessarily when you hear your diagnosis, maybe weeks later, when you cross that border and know in your heart and soul that this is really serious… The hardest thing is to leave yourself, the innocent, healthy you that never had to face her own mortality, at the border.  That old relationship with your body, careless but friendly, taken for granted, suddenly ends.  Your body becomes enemy territory …The sudden crossing over into illness or disability, becoming a patient, can feel like you’re landing on another planet, or entering another country… (Barbara Abercrombie, Writing Out the Storm, 2002).

As a heart failure patient, I’ve been surprised by a lack of support programs and resources like those available in the cancer community, where I’ve been leading therapeutic writing groups for cancer patients for nearly twenty years, beginning years before I was diagnosed with heart failure.  The writing groups offer a safe and supportive environment in which people can write from the personal experience of cancer.  Illness or tragedy cracks us open.  Over the weeks together, patients’ stories become progressively deeper and more powerful as they explore the impact of cancer on their lives.  They are often surprised by the power of their words to touch others in the group as they are read aloud.  A strong sense of community is created in the sharing of one another’s stories.  People feel less alone as they go through surgery and treatment, even as they face death in a terminal diagnosis.  Writing is powerful medicine and part of the motivation for me to begin this blog–hoping it might encourage heart failure patients to also write and share their stories.

Somewhere out there in that darkness are hundreds of thousands … like myself …new citizens of this other country… In one moment of discovery, these lives have been transformed, just as mine has been, as surely as if they had been  plucked from their native land and forced to survive in a hostile new landscape, fraught with dangers, real and imagined.  (Musa Mayer, Examining Myself:  One Woman’s Story of Breast Cancer Treatment and Recovery, 1994.).      

I have become more aware of how loneliness sometimes accompanies those who are living with heart failure, something I wrote about in my February post.  I am not immune to those same feelings, so when I was invited by a cardiac nurse to become a patient partner for Toronto’s UHN hospital community, I quickly agreed.  The Patient Partner program at UHN “recruits, selects, orients, and provides skill-building for UHN patients and caregivers, in order to contribute to important hospital planning and decision-making activities.”

I attended my orientation to the program in February, and afterward, I was eager for an engagement opportunity.  The planned “get acquainted” “evening with other patient partners was postponed due to a late February snowstorm, and my active involvement was put on hold until after my trip.  In the delay, I felt my motivation slipping.   The “get-together” was finally held last week, but by the day of the event,  I considered cancelling my attendance.  I’d had a full day of appointments and meetings, and my energy was waning.  Being an introvert by nature, making small talk with strangers is not something I enjoy, but I forced myself to go.  And frankly, I’m glad I did.

To my surprise, I experienced instant camaraderie with others in the room.  The program team facilitated a relaxed and friendly environment, ensuring we had time to have fun and get acquainted before breaking into small groups to discuss the pros and cons of the patient partner experience.  As we introduced ourselves, telling, in a few words, our different medical diagnoses and conditions, I was again humbled by others’ stories of illness, many enduring far more debilitating and serious conditions than I ever will.  Yet they’ve overcome extraordinary odds, are resilient and actively participating in various hospital initiatives aimed at improving patient care, something I found truly inspiring.  I even had a surprise encounter with another patient partner.  We hadn’t recognized one another at first, but as we were chatting, I realized he had once been o a managing partner at a former Toronto consulting firm which I joined right after graduate school.  In fact, he had been my boss, hiring me 33 years ago!  We laughed and marveled at the unexpected coincidence.  No longer “senior consultant” and “managing partner,” we had simply become former colleagues who both patients and volunteering at UHN.

It was a reminder of how illness levels the playing field between people, stripping us of  old symbols of status or hierarchy, humbling us and making us more compassionate.  In the kingdom of the sick, struggles, sorrow, and fear are part of the universal human experience.  We become more aware of our mortality.  The act sharing our stories of illness or suffering with one another helps to lessen our loneliness, make us feel less overwhelmed, even less sorry for ourselves.   We need one another as we navigate through the landscape called illness, to realize that even though we may be living with incurable conditions, there much more we are capable of being and of giving.

In the telling of our personal lives, we’re reminded of our basic, human qualities—our vulnerabilities and strengths, foolishness and wisdom, who we are…, through the exchange of stories, we help heal each other’s spirits. (Patrice Vecchione, Writing and the Spiritual Life, 2001)

Writing Suggestions:

  • Write about the moment you heard your diagnosis, “I’m sorry, but you have…” Describe that moment in as much detail as you can.
  • What is it like to cross the border into the unknown territory of life threatening illness?  What was it like at first?   What fears did you have?  What fears linger?
  • What old assumptions did you have to leave behind? How has your relationship with your body changed?

What has been the most helpful or supportive experience you’ve had as a patient?

February 25, 2019: The Loneliness of Heart Failure

One is the loneliest number
One is the loneliest number
One is the loneliest number that you’ll ever do…”

(“One,” sung by Three Dog Night, lyrics by Harry Nilsson, 1968)

If you passed me on the street, you wouldn’t know that my heart no longer functions properly, unable to pump blood through my body as effectively as it once did.  You wouldn’t realize my condition is chronic and progressive, and one without a cure.  You might notice–if you’re paying attention–that I no longer walk quickly uphill and sometimes pause for a moment to catch my breath; besides, there are others on the street walking more slowly than I.  There is nothing visible to suggest that I am a heart failure patient; the telltale bulge of my ICD is hidden by shirts or sweaters.  Yet it’s more than likely that I’ve passed many others whose hearts are similarly weakened, because according to Heart & Stroke Canada, over 600,000 Canadians live with heart failure.  In fact, more women in Canada die from it than breast cancer.

Since I was first diagnosed with heart failure over ten years ago, I’ve found it to be a relatively solitary experience. Only recently, since our return to Toronto, have I actually met other heart failure patients.  However, unlike the cancer community which I’ve been involved with for nearly 20 years, I’ve found relatively few resources or face-to-face peer support programs available to those of us who are heart failure patients, despite the fact that heart disease kills approximately seven times more women than breast cancer, and in Ontario, more women with heart failure die from it than men.    “Heart failure,” I’ve often remarked, “is a lonely condition.”

That’s even more disturbing to me, because loneliness–defined as the “longing for greater social interaction”– is bad for our health. Ruth Livingston, PhD, the founder and director of Living with Medical Conditions, writing in a 2011 Psychology Today article, stated:

Being lonely can itself be dangerous to one’s health. Loneliness can double a person’s chances of catching a cold and, worse, lonely people are four times more likely to have a heart attack and, once they do, four times more likely to die from it…Further,… loneliness has an effect on the immune system: …it reduces antibody production and antiviral responses, protective against health risks. Loneliness, then —all alone — is a hazard. 

A 2018 article appearing in The Globe & Mail by journalist Wendy Leung referenced findings from a 2017 research study conducted by a Rice University team.  They found that “loneliness puts people at risk for premature mortality and all kinds of other physical illnesses.”

Why?  Not only is loneliness a source of stress, but they stated, “a sense of being cared for and loved is a crucial factor in our well-being,” something many research studies have consistently concluded.  Some researchers even suggest we are experiencing an “epidemic of loneliness,” and not surprisingly, it is “more pervasive” in countries where social media use is high.  Higher uses of social media often result in a person feeling more socially isolated, not less.  According to a 2018 article published in The Montreal Gazette, British prime minister Theresa May recently appointed a “minister for loneliness” in response to Britain’s growing issue of social isolation.  Meanwhile, in Canada, “research shows …one in five Canadians experience some level of loneliness or isolation.”

One in five patients with heart failure suffers depression, which adversely affects their outcomes and quality of life.  Mental health is a vital consideration for all health care teams who support the over 1 million Canadians with heart failure.  — Ted Rogers Centre for Heart Research, January 30, 2019

Not surprisingly, loneliness often leads to depression.  In a one-year follow-up study with heart failure patients, loneliness was associated with higher levels of depression.  Let’s face it:  loneliness is, quite simply, bad for our hearts, yet it’s not at all an uncommon feeling among heart patients.  Worse, a lack of social support is related to poorer health outcomes, regardless of one’s heart condition. Several studies have underlined the importance of social support on cardiac health.  For example, In three studies of loneliness among adults, those with heart problems had the highest loneliness scores, putting them at greater risk for further complications or death.  In other studies focused on heart failure patients, loneliness was also associated with more hospitalizations and re-hospitalizations.

I’m dating myself, I know, but as I write, the opening lyrics of the song, “People,” plays in my head.  It was a Grammy award-winning song sung by Barbra Streisand in the 1964 film, “Funny Girl”.

People

People who need people

Are the luckiest people in the world…

Streisand was singing about love, not heart failure, but it turns out that we all need some sense of social inclusion and support.  These may well be important factors in disease resistance.  According to one group of Canadian cardiologists, interpersonal support is “a protective factor … associated with lower incidence of coronary artery disease, fewer adverse events, increased longevity and better psychosocial function” (Archive of Cardiovascular Disease, 2015, 108, 417-445 ).

Given the numbers of studies on loneliness and social support in heart failure I’ve found and read (too many to mention here) raises the question why there aren’t more psycho-social support programs for heart failure patients–something I’ve been asking more frequently.  We’re very lucky to have people like Jillian Code, two-time heart transplant patient and founder of the HeartLife Foundation, Canada’s first national patient-led heart failure organization,  or Jackie Ratz, a Manitoba heart failure patient, patient advocate, and founder of founder of a Facebook support group Canadian Women with Medical Heart Issues, each of whom have initiated resources and online sites aimed at supporting those of us similarly diagnosed–work that truly deserves commendation.   But we still need more kinds of psycho-social support resources.

Although I’m relatively new to the heart failure community in Canada, when I was first diagnosed and treated in California, my experience was even more solitary and isolating. Other than one very mediocre education workshop I was assigned to attend, I found nothing even close to the wealth of patient support programs in the cancer community, where I’d been a patient and a volunteer program leader since 2000 (which I continue at Gilda’s Club here in Toronto).  Now, thanks to my extraordinary cardiologist, who urged me to become “engaged” at my very first appointment with her, I’ve begun participating in committees and initiatives concerned with heart failure care,  becoming a “patient partner” locally, and writing from my personal experience as a patient from time to time in this blog.  I hope that this enables me to make a meaningful contribution to help address that “other” part of the heart–the one that sometimes experiences loneliness, isolation, or depression.   Besides, “engagement” is good for my heart too.

Thanks to Wendy Leung’s Globe & Mail article, I learned about a unique initiative by  Toronto graphic designer Marissa Korda.  She designed and launched “The Loneliness Project,”  in the fall of 2017, inviting individuals to share their stories and experiences of loneliness on her online site–a way of telling their stories to others who may be also be feeling lonely. Those who do are prompted by one or more of Korda’s questions:

.  When was the last time you felt lonely?

.  What does loneliness mean?

.  Tell a story of a time you felt most lonely.

.  Describe one of the first times you realized you were lonely.

Writing from your personal experiences of illness, as participants in my writing groups attest, is one antidote for loneliness.  An online community like Korda’s may be one way another way to share your experience and, at the same time, stick your toe in the water to make social connections that help combat loneliness.  You can read more about Korda’s project and the inspiration for it here.

Loneliness may be common to anyone at times, but when you are living with heart failure, it’s important to have social support and to find things to help diminish your loneliness.   Even simple activities like taking a walk, sitting in a sunlit garden, or reaching out to a friend can help combat those feelings of isolation.  Take just a step at a time, but try to re-engage with the things that normally make you feel better.  Reach out; reconnect with friends and family.  It’s good for your health and a powerful way to overcome loneliness–because, As Bette Midler sang in her 1972 album, The Divine Miss M., “you got to have friends…”  :

...And I am all alone
There is no one here beside me
And my problems have all gone
There is no one to deride me

But you got to have friends
The feeling’s oh so strong
You got to have friends
To make that day last long…

(Lyrics by Mark Klingman & Buzzy Linhart)

Writing Suggestions:

  • What is your experience of loneliness as someone with heart failure? Describe it.
  • What helped you overcome it?
  • What images or metaphors best capture your experience or feelings of loneliness. Expand on them and create a poem, a narrative, a song.
  • What has helped you diminish the feelings of loneliness that can accompany living with heart failure from time to time?
  • What advice do you have for the newly diagnosed?

January 8, 2019: Flourish: Living a Full Life with Heart Failure

i am running into a new year
and the old years blow back
like a wind …
it will be hard to let go
of what i said to myself
about myself
when i was sixteen and
twenty-six and thirty-six…

(From:  The Collected Poems of Lucille Clifton 1965-2010, Young & Miller, Eds., 2012)

I recalled “I am running into a new year,” the first line and title of Lucille Clifton’s poem,  as 2019 began, although “running” is not an entirely accurate description of how I’ve begun this New Year.  If I take account the reality of aging, of living with heart failure, I have to be honest.   I am actually limping into a new year, thanks to arthritis in my right knee, and, like it or not, a slower pace of life that comes with being a heart failure patient.   Nevertheless, I’ve begun the year with every good intention to make it as happy and healthy as I possibly can.

I greeted January 1st with a practice I’ve had for nearly ten years, considering what I want my life to be about in this New Year and how that is manifested in word, deed and action.  I began several days ahead of first exploring and choosing a single word to frame my intentions and act as a road sign for the year ahead.   With all that has happened in 2018, health-related words were top of mind.

After several hours of deliberation — a necessary process for me to find a guiding word that resonates with what I intend or hope for it in multiple ways–I finally settled on “flourish,” which, according to the dictionary, means, “to thrive, achieve success and prosper.”  Its etymological roots can be traced back to the early Latin word, “flor,” meaning to flower, although the first known use of “flourish” in the English language didn’t appear until the 14th century.  Flourish seemed an apt choice for framing how I want to guide my life and  health in the coming year.  I typed it out and, as I always do, placed it in a small 2-inch frame to sit on my desk as my daily reminder.

Choosing a word was only the first part.  Now I had to consider how “flourish” was going to translate to action, especially since I’m living with heart failure–and at a time when my daily intake of medications continues to increase, and I now record my blood pressure, heart rate and weight on a daily basis, sending it to the cardiac center with the push of a button on my iphone.

I couldn’t help but think of all the cancer patients who’ve written and shared their experiences with me.  Cancer mobilizes them to fight–it’s an invader, errant cells multiplying and growing, and they hope for a cure.  Where the heart is concerned, it is different, and as some authors have described, “the ultimate arbiter of our lives.  When it calls time, the game is overThe heart, “plain and simple, is a pump.”  (From the introduction: The Sublime Engine:  A Biography of the Human Heart, by S. Amidon & T. Amidon, 2012).  The thing is, this pump of mine is weakened and, gradually, wearing down.  It’s not fighting I want to do where the heart’s concerned.  Rather, I feel protective about my ailing heart, a sense of needing to treat it tenderly and gently, hovering over it like a mother at the bedside of her ill child.   I wrote the obvious question across the page of my notebook:  So how do I flourish living with heart failure?

Shakespeare’s “Shall I compare thee to a summer’s day?” came to mind–  an irrational thought, or so it seemed, but as I addressed my heart, I wrote,   “Shall I compare thee to an old car?”  I recalled my high school boyfriend’s old, well used, Ford Model A–a true jalopy.  It couldn’t do much more than get him from home to school, or provide the transportation for a date in our small town, its ancient engine “putt-putt-putting,” as he drove.  There was never any danger of a speeding ticket, although its age often cast doubts in our minds if the old jalopy would make it up a hill.   Yet my friend loved that old car, keeping it clean and shiny with polish, and together with his father, tinkering frequently with the engine to keep it running.

I suppose it’s not unlike the way in which I think about my heart.  Coupled with the care of my cardiologist, the medications I take daily, and my own efforts, I’m intent on keeping my aging engine going for as long as I possibly can.  It’s not perfect by any means.  But I’m intent on flourishing, walking as often as I can around the neighborhood, running errands on foot, carrying my necessary purchases on my back as I walk home.  I never forget about my heart.  How could I when, walking from uphill from our apartment to St. Clair Avenue, I have to pause at a corner, watching the lights turn red, green then red again, to quiet the thudding in my chest.  A momentary fear surfaces:  “Good grief, am I going to pass out here?”  Invariably, I recall the day I actually did pass out ten years ago while walking my dog.  But then the light turns green, and I resume my walk,  reminding myself to keep a slower pace.  I’ve become a “putt-putt” shadow of the long-legged, brisk striding, younger person I once was, when my husband would always complain, “Slow down”– but that was before heart failure and arthritis.  I can’t let the necessity to walk a bit slower keep me from doing something good for the heart.   Walking is one way  I can flourish.

Like it or not, flourishing also requires coming to terms with my aging body.  To wit:  I try to get to the pool a couple of times a week, but I’m no longer an energetic lap-swimmer I once was.  I lack the lung capacity I once had.   Now I carry a bright turquoise “noodle” into the pool to help keep me buoyant as I move back and forth in the water, legs bicycling,  arms doing a modified breast stroke.  I present a comical picture,  but flourishing also involves not taking myself too seriously.  I’m no beach blanket beauty, just an aging woman, less toned than I once was, trying to fend off my embarrassment as I try to exercise.  As the Nike ads once proclaimed, “Just do it.”

I also follow Nike’s dictum every  Friday, when I attend a weekly dance class with other women of indeterminate ages.  We’re  called “The Vintage Dancers.”  I think you get the idea.  Despite my arthritic knee and stiffer joints, I still like to try, because I love to dance.  I don’t have any illusions now:  one glance in the mirror dispels the memory of that former self, sleek in lavender spandex, quick to learn new routines.  Oh, I still wear spandex, common now in athletic garb, but the gracefulness and agility I once prided myself on has all but vanished.  I try to do my best to follow along with the fast pace my instructor establishes, whether it’s salsa, Bollywood, hip hop, or an Israeli folk dance, but I am no longer “fleet of foot or, it appears, able to remember all those new steps as easily as I once could. I end up laughing more often than getting through a complete routine.  Yet now and then, everything clicks, and I do a full routine correctly.  Then without thinking, I’m likely to raise my fist in the air and shout, “Woo Hoo!”  Clumsy or not, I dance because it’s joyous, fun, and above all, I love to laugh.  Movement helps, but laughter, I believe, is a necessary part of flourishing.

As for a heart healthy diet, I’m pretty good about watching salt intake, eating more servings of fish and plenty of fruits and vegetables, but I also enjoy an evening out with my husband, family or good friends.  I put caloric intake aside on those evenings, enjoy a glass of wine with the food and conversation, and the company of people I like.  Friends and family are important to my ability to flourish.  I recall the work of physician Dean Ornish, whose work I followed many years before I ever became a heart failure patient.  Ornish, founder of the Preventive Medicine Research Institute in California and a Clinical Professor of Medicine at University of California, San Francisco,  is best known for  his advocacy of diet and lifestyle changes in treating and preventing heart disease.  But importantly, Ornish  included social support as an important aspect of treating and preventing heart disease.  “The need for connection and community…affect the quality of our lives” he said, “but they also affect our survival to a much larger degree than most people realize” (quoted in Heart: A History, p. 237, by Sandeep Jauhaur, 2018).

As I listed these activities, I realized there are others also important to my ability to flourish,  like engagement in intellectual and social activities I care about:   writing, leading expressive writing groups for cancer patients or offering a patient perspective in heart failure care initiatives.  Flourishing is part of taking advantage of all this city has to offer:  music, art, theatre, walking trails, and the vibrancy of a multi-cultural environment.

After I’d enumerated the activities in my life that are important to for me to flourish in life, I returned to my heart, that “pump” I referred to  at the beginning of this post.  It’s no ordinary pump or engine.  The heart fascinates me.  It is the only organ that represents the qualities that make us most human and has inspired a multitude of  metaphors throughout history.  It is truly an uncommon pump.  It’s not only amazing, it gives us life.  Flourishing then, despite and yet because I live with heart failure, includes so much more than my diet, exercise and medications.  Flourishing is also about love, laughter, friends and the ability to find joy and gratitude in every day I live and breathe.

A Writing Suggestion

.  Have you chosen a guiding word for your life this year?  If so, try to flesh out all the ways in which your word translates into actions and intentions for living as fully and actively as you can.

.  Don’t have a word?  Why not try choosing one that captures what’s important in your life for 2019.

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?