August 27, 2020: “Writing the Heart” is Changing

“Writing the Heart” is changing its focus. Thanks to the inspiration from those who’ve written and shared their stories in my many writing groups, I’ve come to believe that writing about illness is, ultimately, writing about life. And it’s life I want to focus on in this blog.

I am now in the process of re-conceptualizing and re-designing the blog site. The primary change (other than a new look) is that the blog site will not longer be focused on heart failure, but rather, the “life” of the heart: the places, experiences and people and people we “carry in our hearts”. Once the site is re-launched, my hope is that those of you who follow the blog might be inspired to write and share stories, essays and poems from your own life experiences. More on that at a later date.

Please stay tuned and check back late September/early October for the re-launch writingtheheart.ca.

Best wishes,

Sharon

August 3, 2020: COVID: A Time for Reflection

Illustration by Maurice Sendak (in A Time for Butterflies, by Ruth Krause)

Starting here, what do you want to remember?
How sunlight creeps along a shining floor?
What scent of old wood hovers, what softened
sound from outside fills the air?…

For the month of July, I took a month-long hiatus from writing my blogs–something I haven’t done in the 14 years since I first began my “Writing Through Cancer” blog.  But in this unusual time created by COVID, I felt the need to break from my self-imposed schedule of posting and instead, have the freedom to let my mind—and my pen—wander where they would.  It was a necessary period to simply reflect and be, in the sense of writing, quiet for a time.

I kept my daily writing routine—a habit indispensable to my day.  Some days my notebook pages were half empty, as though my muse had gone into hiding; on other days inspiration would strike, playful, serious, or lead me into a re-examination of past writing—it hardly mattered.  I simply let whatever emerged on the page, be.  I began re-reading pages and pages of old posts, books of poetry, and others about writers and writing.  I questioned whether to continue my blogs or to let them gradually fade away from inactivity. I questioned the writing of separate posts for cancer and heart failure as I’d initially done.  The two had already begun to converge in recent weeks, and not surprisingly.  Writing about serious illness, trauma or suffering is less about the illness itself and more about the human experience.  It is writing about life.

The upending of what was normal, months of social isolation, social distancing, closures, and virtual everything has been sobering.  During the early months of COVID, I had celebrated another birthday, less welcomed this year as my birthdays before COVID and when I was much younger.  My past birthdays signaled a new year, one that held promise, opportunity, new plans and dreams, while this most recent one was punctuated with questions:  How long will this continue?  Will my life be shortened by this virus?  What will the coming year hold for all of us?

Of course, there were always some years I was happy to bid farewell–ones marked by personal tragedy, loss and illness– but even then, the passing of another year signaled the possibility for something better.  Looking back, I realize that my “crosshairs” were firmly set on what Wallace Stegner once described as “the snow peaks of a vision” in his Pulitzer Prize novel, Angle of Repose, (1971).   I was always looking ahead to the “what’s next? “What’s possible?”   Before COVID, I still had that “looking ahead,” the hope, possibilities of something “new” to look forward to, a new goal to achieve, a trip to another country, some “better thoughts” that might turn into something significant on the page…   COVID, like cancer and heart failure temporarily did, foisted a “hold” on those future possibilities, and the longer our lockdowns and restrictions have continued, the more I realize we—all of us– are unlikely to return to the same world we knew and took for granted just six months ago.  What, then, I wondered, do we look forward to now?

Will you ever bring a better gift for the world
than the breathing respect that you carry
wherever you go right now? Are you waiting
for time to show you some better thoughts?

The little respite from the blogs that  I granted myself has helped me realize that this strange and unusual time has given me a chance to look back, reflect and have gratitude for the life I’ve been fortunate enough to live thus far, even if I sometimes regret I haven’t accomplished all I set out to do.  It’s also helped me clarify what matters most to me and how and where I want to expend my energies as life moves forward.

I am more aware than ever of the fragility and uncertainty of life.  I take nothing for granted.  My brushes with cancer and heart failure, the experiences of the men and women who write with me from the experience of life-threatening and terminal illness continue to remind me how precious life is and yet more, how challenging and difficult it can also be at times.  None of us is immune from illness or hardship. No one escapes. Cancer, heart failure, a pandemic of COVID:  serious illnesses remove any pretense or assumptions about ourselves we may have—a time, perhaps, when we need to pause and reflect, gain insight and discover so much more of who we are and have the potential to be.   Maybe that’s one important lesson I will take from this time of pandemic—and use it to continue to inform how I want to live and engage with others.

When you turn around, starting here, lift this
new glimpse that you found; carry into evening
all that you want from this day. This interval you spent
reading or hearing this, keep it for life –

From: “You Reading This, Be Ready,” by William Stafford)

Writing Suggestions

  • What has been your COVID experience? Write about the concerns, reflections or insights about life as you’ve known it—and how it may change.
  • Do you agree or disagree: “Writing about serious illness is really writing about life.” Why or why not?
  • What new glimpse of life and living have you discovered out of hardship or serious illness?
  • Begin with the line, “Starting here, what do I want to remember?” and keep writing for ten minutes.  Re-read.  What stands out?

A Brief Hiatus

Dear Readers,

As you might have guessed from my last post, I’m in need of a little respite to refuel and re-energize.  I’ll be offline until August, but please do use the archives during this time…there’s well over a year’s worth of bi-weekly posts and prompts to help ignite your writing.

Stay well and stay safe…a friend of mine wrote about being a “good masketeer,” and for a good time yet, I’ll be wearing my mask anytime I’m out and about in Toronto.

Warm wishes,

Sharon Bray

June 18, 2020: Writing the Blues

I admit it.  Three months of lockdown and relative social isolation, and my muse has flown the coop.  “I’m outta’ here,” she cried yesterday as I tried for the 5th day in a row to compose a post that might inspire my readers to write.  No amount of deep, mindful breathing, a walk through the tree-lined streets in our neighborhood, quotes from books and articles or frantic, whinny pleading to that creative muse worked.  She disappeared, leaving me staring at the blank page.

I had only just finished another online workshop for Gilda’s Club—part presentation, part offering short writing “bursts” and part encouragement on how to get started exploring the experience of cancer through writing.  “Nothing to write?”  I asked, then offered a suggestion:  “Start with anything.  Anything can be a prompt.  Anything can provide inspiration.  Or start with nothing, writing the line, “I have nothing to write, “over and over until you discover you DO have something to write.”  It’s an approach I often use for myself, quite honestly, and in doing so, I stumble into ideas, questions, and inevitably, a blog post that I post on this site.

Guess what?  It hasn’t worked for me this week.  I’m not even inspired to write a silly poem or  bake another batch of scones (and that’s serious).  I blame it on the COVID blues…or, perhaps more accurately, COVID boredom.  I’ve read so many books in the past three months that  I have actually grown tired of reading.   I’ve grown weary of the monotony of having to stay so close to home, of news reports of the current numbers of outbreaks and death, of Zoom meetings instead of face to face and the knowledge that this kind of life is going to be with us for some time  yet.  That sounds like the blues to me, or at the least, a bit of boredom with myself.  And it’s accompanied by an utter lack of inspiration, of even the glimmer of an idea to get me writing.  As I write, I suddenly recall a folk song from my (much)  younger days.  I hear the “The San Francisco Bay Blues” in my head.  It was originally composed by Jesse Fuller (who I saw in person in the mid-sixties) and subsequently performed by the likes Bob Dylan, Jim Croce, Eric Clapton, Janis Joplin, John Lennon, Peter, Paul, and Mary, Eva Cassidy and many more.  “I got the blues for my baby/left me by the San Francisco Bay…”  Well, it’s rattling around in my head now, but the words are different:     “I got the blues for my muse and/ I’m  far from San Francisco Bay…”

Perhaps you’re finding this time a little boring or difficult in other ways. Perhaps you have children at home and the fatigue of home schooling and providing ways for them to be entertained is stretching your patience.  What gets you through the long days of social isolation?  Have you found new ways to be creative?  New activities to occupy your time? Write about living in a time of pandemic.  Write  about how you keep the blues at bay.

May 29, 2020: In Praise of the Commonplace

It’s been nearly three months since our daily lives were altered by COVID-19.  Some days I can’t believe it’s been that long; other days, it seems that we’ve been living in a world of closures, social distancing and relative isolation far longer.  What do I miss?  The ordinary life I had…walking without being so conscious of staying six feet apart from others, face masked, knowing I’m one of those in a” higher risk” category, and our world largely confined to our neighborhood and the Toronto apartment where my husband and I now live.  Normally an early riser, I have begun to sleep a little longer in the mornings, the dull rhythm of a question, “What am I going to do today?” playing in my head like a broken record.  But old habits re-exert themselves, I grow restless and rise to begin, again, another day.

What keeps me going in this strange time?  It’s the familiar, the habits and structure in  small, daily tasks:  making the morning’s coffee, walking the dog, sweeping the floors, making the bed, writing—even as the pages are often filled with the increasingly mundane meanderings of a mind  dulled by repetition—planning and preparing the evening meal, a pre-dinner glass of sherry with my husband, a good novel on hand, nightly reruns of Agatha Christie mysteries and other old British dramas, then lights out sometime around 11 p.m..  And in the morning, my routine begins again.

The shoes put on each time
left first, then right.

The morning potion’s teaspoon
of sweetness stirred always
for seven circlings, no fewer, no more,
into the cracked blue cup.

Touching the pocket for wallet,
for keys,
before closing the door.

How did we come
to believe these small rituals’ promise,
that we are today the selves we yesterday knew,
tomorrow will be
?

(“Habit,” by Jane Hirshfield, in Given Sugar, Given Salt, 2002)

In a 2014 blog post, I had explored what it meant to be “in remission,” told that one has  “no evidence of cancer at this time,” words that signaled a reprieve from the relentless routine of doctor’s appointments, scans, tests, and weeks of treatment regimens to a return to “normal life.” It didn’t mean a return to the life one had before as many survivors discovered.  And I’m all to aware now, that after we finally see an end to the COVID lockdowns, whatever was normal before the pandemic will not be the same afterward.

When one survives cancer and is given the diagnosis of “in remission,” you still live with the knowledge that “survivor” does not guarantee a permanent state of grace.  You may have many years left to live or perhaps less.  There is one certainty, however:  you never take anything for granted again. You might even feel a little guilty, especially when you have come to know many others, cancer patients as you once were, whose prognoses are less favorable and may well die from their illness.  You’re relieved, yes, but it can also seem unfair.  Why have you survived while others will not? 

“I’ve gone from thinking, ‘Why me?’ to thinking, ‘Why not me,” a former group member said.  “In the beginning, it was comforting to think of fighting to survive…   I believed that I should have a powerful drive to accomplish something, but,” she confessed, “I don’t find that drive in me now.”  Now, as the economy worsens and so many people are feeling the other effects of the pandemic:  job loss, retirement incomes diminishing, loss of family members or loved ones, what, I wonder, will the “drive to accomplish something” be like?  What will “normal life” look like after COVID?  And what will have changed for each of us.  Perhaps if we are to learn anything from the state of being “in remission” or once this pandemic is truly ended, it may be about living differently that we did before and truly cherishing life in ways, perhaps, that we have been too busy to notice.


A friend and cancer survivor wrote me several months after she had officially been diagnosed as “in remission.”  The likelihood of her cancer returning is still greater than she would like, but she discovered things about life and living that have become truly important to her after cancer.  In a letter to me, said wrote:   I love the things I do day by day.   I hike with a beloved friend.  I spend time in the wonderful garden of another.  I meet friends for coffee, talking with each other with pleasure and leaving them with joy and a benefit to my mind and spirit… It frees me from having to make every moment count.  It takes off pressure that would exist if I had to accomplish something in particular before I die…” 

Like many survivors, she was discovering comfort and meaning in accepting the natural ebb and flow of everyday life, small pleasures of love, companionship and nature.  She was grateful for Life, for what, as poet Ellen Lerman so wonderfully expressed, the simple joy and fulfillment in what life gives us:

This is what life does. It lets you walk up to

the store to buy breakfast and the paper, on a

stiff knee. It lets you choose the way you have

your eggs, your coffee…

Life lets you take the dog for a walk down to the

pond, where whole generations of biological

processes are boiling beneath the mud. Reeds

speak to you of the natural world: they whisper,

they sing. And herons pass by. Are you old

enough to appreciate the moment? Too old?…

Upon reflection, you are

genuinely surprised to find how quiet you have

become. And then life lets you go home to think

about all this. Which you do, for quite a long time…

My friend’s words still resonate with me, because it took me more than one life crisis to cement my resolve to live differently.  The achievement ethic drilled into me early in life, good intentions would give way to slippage into old habits of being, of accomplishment, and the rush, busyness and stress of a life style that was not, I sometimes allowed myself to admit, good for me.  It would take a few more years, an emergency ride to the hospital, three days in observation and a diagnosis of heart failure before I paid attention to truly changing how I wanted to live.  The real task of living required a mindfulness, a time to be fully present and pay attention to little moments, the gifts of beauty, joy, and laughter.  Gradually, I developed daily routines that continue to give my life a healthier structure and meaning:   the morning walk with my dog—at her pace, not mine—the creativity and mindfulness of preparing  an evening meal and taking the time to enjoy it with my husband, to have the sacred space to write each day, because doing so keeps me attentive, grateful, and remembering how lucky I’ve been in life—no matter the hardships I’ve suffered from time to time. Now, in this time of isolation and social distancing, I am again reminded of how one find can pleasure and something new in each day, despite its seeming predictability or, in a time of uncertainty, because of it.  These are the simple gifts to be found in the ordinary and commonplace.   

I turn to the poetry and wisdom of A., diagnosed with a rare and aggressive cancer, and part of the Stanford Cancer Center group I led for several years.  She lived with the knowledge of her certain and impending death, choosing, for the final year and a half of her life, to live alone in a small cabin in the California redwoods, a source of inspiration and peace for her.  She wrote prolifically and daily, creating poetry, several of her poems published, out of her experience and reverence for the life and beauty she found in the most ordinary moments of each day of her life.  In 2012, cancer took her life; a few weeks later, three of her poems were published in the American Poetry Review—testimony to her extraordinary gifts.  In the poem, “Directive,” she reminds us to remember the abundance of gifts to be found in what we consider commonplace—if only we stop to pay attention:   

Remember the commonplace, the wooden chair on the white planked deck,
trees kneeling in the rain and deer prints
leading into elegant rushes. A kinder place
cannot be found: where you sit at the top
of shadowy stairs, the window lifted…


Let me speak for you: there’s comfort
to be found in fatigue, in letting principles
fall like stones from your pockets…

Fall into the ordinary,
the rushes, the deer looking up into your heart,
risen, full in the silver hammered sky.

(From “Directive,” by A.E.)


I am grateful for the gifts of poetry I received from A. and for remembering her words in this unusual time that it is in the commonplace,  our ordinary and everyday routines that are reminding me, again,  to appreciate the life I have, the small gifts I am given each day.  I don’t know what life after COVID will be like—but I know it will not be the same.  I only hope the lessons of this time will have some lasting impact—and t just for me, but for the world.  For now, I am grateful for Life…the commonplace, everyday, routine of living.

This is life’s way of letting you know that

you are lucky. (It won’t give you smart or brave,

so you’ll have to settle for lucky.) Because you

were born at a good time. Because you were able

to listen when people spoke to you. Because you

stopped when you should have and started again.

So life lets you have a sandwich, and pie for your

late night dessert. (Pie for the dog, as well.) And

then life sends you back to bed, to dreamland…

(From “Starfish,” in Our Post-Soviet History Unfolds, 2005)

Writing Suggestions:

  • “Borrow” a line from any of the poetry in this post.  Let it be the first line you write on your page…then, let it take you wherever it wants to go.
  • What, in the ordinary routines of your life, matters most to you?  What small habits or practices?  Why?
  • Write about this “time of COVID” and how it’s changed your life—possibly for good.
  • What lessons do you hope come from this pandemic experience?
  • Has your experience with living with a serious or life-threatening condition help or hinder how you’ve dealt with life in lockdown?  What wisdom might you share?

First-ever Expressive Writing Workshop for People with Heart Failure

(Article by Jeff Jurmain, Ted Rogers Centre for Heart Research, “First-ever expressive writing workshop for people with heart failure,” January 28, 2020, tedrogersresearch.ca).

On Feb. 19th, the Ted Rogers Centre will host its first-ever expressive writing workshop for people living with heart failure. As a non-medical extension of therapy, expressive writing can deliver positive physical and emotional benefits, particularly when done in a safe and supportive environment with others and guided by a facilitator.

Heart failure is the world’s fastest growing cardiovascular disease and impacts people across the lifespan. More than one million Canadians live with heart failure – a number projected to grow 25% in the next two decades. It is a leading cause of hospitalizations and of mortality.

Still, there are new reasons for hope. Breakthroughs in treatment and self-care, targeted medicines, the rise of stem cell therapy and genomics that can detect and even prevent heart failure are changing this forecast.

Meanwhile, for those who live with this difficult disease, a significant body of research demonstrates that putting pen to paper or fingertips to keyboard can be beneficial to one’s health.

writing for heart failure

YOUR HOST: SHARON BRAY

Sharon Bray is a Toronto writer and educator who is a patient of our own scientific lead, Dr. Heather Ross at Peter Munk Cardiac Centre. A breast cancer survivor, Sharon developed heart failure in 2008.

Eight years prior, while living in California, Sharon initiated her first expressive writing programs for cancer patients, subsequently speaking at many health-care conferences, authoring two books on the subject, and leading an expressive writing group for faculty and students at Stanford Medical School.   

Sharon is motivated to help others explore their thoughts and feelings through writing, and several months ago, began her most recent blog, Writing the Heart“One of the ways for me to understand heart failure is to write from my lived experience, and I want to encourage others to do so as well,” she says.

ON WRITING WITH HEART FAILURE

For those living with a serious illness, expressive writing is proven to elicit many health benefits, including reduced stress, fewer doctor visits and improved sleep. In a group environment, writing about life with heart failure provides not only emotional release, but the community of support helps diminish loneliness that often accompanies a chronic disease.

“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,” Sharon writes in a blog entry. “Your stories matter. We find hope and wisdom in one another’s stories. It’s through story that we make sense of our lives, reclaim our voices, and even discover our words can touch others’ hearts.”

In the Feb. 19th workshop, Sharon will provide a safe, supportive and confidential environment where people are free to write about anything. Writing prompts often stem from the medical experience of living with heart failure, touching on elements like fear, treatments, a changing body, doctors as well as personal topics such as hope, memories, and family.

All writing happens inside the two-hour workshop and, after each exercise, participants have the opportunity to read aloud if they are comfortable to do so. There is no intention to critique or interpret someone’s words; instead, responses focus on specific words or phrases that the listeners find powerful or moving. 

“Honest writing helps improve the quality of life,” says Sharon. “There’s a transition that happens – it’s felt in the body, but we can’t make sense of it until it’s spoken or on the page.”

Register for the workshop by emailing Jane MacIver at jane.maciver@uhn.ca.

TIPS TO BEGIN WRITING AS HEALING 

While the greatest healing writing can provide is in the group setting, there are many ways to begin writing on your own.

  • Choose a time in your day where you are typically alone and find a comfortable place to reflect.
  • Write three times a week on any topic without censoring yourself.
  • Start with 15 minutes, write whatever matters to you at that moment. Re-read your story and highlight words/phrases that stand out. Start your next piece of writing with those words/phrases.
  • Unstructured poetry can be a natural way to begin writing.
  • Find inspiration to write anywhere: a favorite tea cup, trees outside the window, an interesting conversation overheard on the subway.
  • Carry a small notebook that can fit in our pocket and jot down anything you hear or see that could get you writing.
  • Use writing prompts to get going. Examples from Sharon: “When the doctor said…”; before heart failure / after heart failure; “I hope for…”; “I am most grateful for…”; fear, anger, disbelief; let your heart speak.

November 28, 2019: A Brief Hiatus

Dear Readers of “Writing the Heart”

November 28, 2019 “In Transition (again)”

November 28, 2019 by Sharon A. Bray, EdD | Edit

Dear Readers,

Louise DeSalvo, writing in her book, On Moving (2009)puts it this way:  “The effects of moving are experienced in the body…”  I will attest to that.  My husband and I are packing up our belongings for a third time in three years, moving (thankfully) only a few floors up in our building, but the change precipitated after a summer of having our ceiling open up and flood areas of our living and dining room–not once but twice, due to the forgetfulness of an elderly resident living above us.  Unwilling to risk a third downpour on our furniture and carpets, we’ll shortly begin the process unpacking all the many boxes that we’ve packed over the past two and a half weeks.  However, my husband has been limping for weeks from an injured knee, and I have, in the attempt to do the lion’s share of boxing and lifting, put my back out…so yes, I agree, moving IS being experienced in this writer’s body!

Writing the Heart (previously heartmusings.ca) posts will resume in mid-December.  In the interim, if you’re looking for some aspects of your heart failure experience to write about, please do peruse the archive, where you’ll find a year’s worth of previous posts and writing suggestions.

Best wishes,

Sharon Bray

October 28, 2019: Writing The Heart

The heart remembers everything it loved and gave away,
everything it lost and found again, and everyone it loved, the heart cannot forget. 
–(Joyce Sutphen, from:”What the Heart Cannot Forget”)

As someone living with heart failure,  I am more aware of the physical life of my heart than ever before.  Every morning I check my blood pressure, heart rate and weight, entering the information in “Medley,” the app on my iphone developed by the team at Peter Munk Cardiac Center.  I am grateful for Medley; it keeps me attentive and more aware of heart health.  However, before my heart failure diagnosis, matters of the heart were predominantly emotional and poetic.  And even yet, those metaphors and associations are the more frequent way I describe what I’m feeling.  Think about it:  how many times do we refer to our hearts when we’re describing emotions?  Consider a few like “my heart is filled with joy; heavy with sorrow; a broken heart; a heart full of love… 

The heart is a long-standing and dominant aspect of poetry and prose across cultures and most often used to describe human emotion.  Author Gail Godwin, writing the prologue to her book, Heart, quotes a number of heart references, for example:  Yeats: “the rag and bone shop of the heart,” St. Francis:  “a transformed and undefended heart,” Tony Bennett crooning, “I left my heart in San Francisco,” Jesus Christ: “Blessed are the pure in heart,” and Saul Bellow’s comment, “More die of heartbreak than radiation,” among others.  I think of the Tin Man in The Wizard of Oz:  “If I only had a heart…”

Well, I have a heart, and it’s still beating, with a little help from an ICD and a regimen of daily medications.  What’s more, I continue to refer memories and emotions that, as e.e. cummings described, I “carry in my heart.”  It’s no surprise, then, that one of the writing exercises I use, whether in the expressive writing groups I lead for cancer patients or in creative writing workshops I’ve taught, I use an exercise inspired by the heart; the heart, as Joyce Sutphen describes, “that cannot forget.” Here’s how it works:

Begin with a large image of a heart.  You can draw a large valentine-shaped heart or, as I prefer to do in the workshops, use an image of the human heart.  The task is to answer, in three separate steps, the larger question, “what do you carry in your heart?” Take the image and next to it or on it, write your responses to these three questions, giving a few minutes to write between each.

1.  What people, living or dead, do you carry in your heart?

 2.  What places do you carry in your heart?

  3.  What events or happenings in your life do you carry in your heart?

Simply list as many names or labels as you can for each question.  Once you’ve answered all three, take some time to read what you’ve written on your heart.  Now, choose one item–person, place or event–that has the most pull or power for you.  Take a clean sheet of paper and for 15 – 20 minutes, begin writing about that person, place or event–whether a narrative, a poem or just free association, it doesn’t matter.  Keep writing for the allotted time.  Do not stop to edit or re-read until the time is up. 

What typically happens with this exercise? The stories that are written are often emotional, yes, but they are also more “alive,” descriptive and engaging, coming “straight from the heart.”  Even the most reluctant writer, the one who says, “but I’m not a writer,” will surprise herself with the writing that emerges from the heart exercise. 

If you are one who would like to write but isn’t sure how to begin, this exercise can be a great way to get started and a way to capture the stories of your life.  Writing about what matters, what has shaped and defined you, is also a way of release, often a way to express difficult events and emotions that are sometimes bad for your health.  Everyone has stories to tell.  As I often say to those who’ve attend my groups, often shy about writing, “if you don’t tell your story, who will?”

…I have learned that story assuages grief, and it also grants the chaos of our emotions some shape and order…Even as I watch my mother become more and more distant from the lives around her…I am doing what I have been preparing all my life to do:  listening again to the old stories and committing them to memory in order to preserve them.  I am still doing my work in terms of what I have come to believe defines immortality.  Being remembered.  (From:  The Cruel Country, by Judith Ortiz Cofer, 2015.)

I, like many of you, have had a few medical experiences in my life– near death, breast cancer– now I live with heart failure. Sooner or later, we “get” that we are not immortal.  Living with heart failure has made me more aware of what matters most in my life.  As Judith Cofer described, I am aware that the stories of my life, the places, events and people who helped to define and shape who I have become, are the legacy I have to pass on to my daughters and grandchildren.  To remember.  To be remembered.   “Death, as Jim Harrison wrote in his poem, “Larson’s Bull,” steals everything but our stories.”

I am the only one who can tell my stories and say what they mean.  (Dorothy Allison, in Two or Three Things I Know for Sure.)

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?

 

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.