August 25, 2020: The Comfort Found in Books

I’ve been thinking about how much our daily lives have changed as the COVID lockdowns continue here.  More than that, I think about  what it is that keeps us putting one foot in front of the other on a daily basis, how the small daily routines or household tasks keep me going, providing a sense of normality to our lives even though this prolonged period of social distancing and relative isolation continues without any sure end in sight.    I’m not alone in fending off boredom, feelings of malaise or that constant low-level anxiety that is part of the uncertainly of this strange and isolating time.  Heart failure puts us in a higher risk category for contracting COVID just as those living with cancer, undergoing treatments and their continuing recovery.  

My experience with cancer was a mild one—very treatable, but the impact enough to influence my shift away from a life in non-profit management to what I loved doing most:  writing and teaching. And out of that change, I also began the twenty years of leading expressive writing workshops for cancer patients and others.   The writing workshops I lead for cancer patients and survivors have continued, despite this time of Covid, although virtually, and their feelings about living through this pandemic have echoed those of British author, Susie Steiner.   Her title of a recent article, “It has been easier to cope with my cancer during lockdown…” in the June 13th issue of The Guardian,  got my attention.  Currently undergoing treatment for  a brain tumor, she began her article saying “I wrote my latest novel…with a 9cm tumor pushing my brain over its midline.  But I didn’t know about it.”  Even more ironically, Steiner wrote, “…I was plotting a cancer storyline, not yet knowing that I had cancer.” (The Guardian, June 13, 2020).

 “So much of the experience of cancer is the waiting rooms,” Steiner wrote, “ is the hard chairs, the inequality between patients and medical staff—you feel so vulnerable in your elasticated slacks with your terrible hair…waiting for them, terrified, in the Room of Bad News.”  Yet she says that it has been easier for her to cope with her cancer during the  COVID lockdown knowing she was not the only one whose life was on hold nor fearful of contracting the virus and possibly dying. 

Cold comfort, perhaps, but like cancer, any of us who fall into that “higher risk” category are  all in a kind of waiting game, in limbo, taking greater precautions, dumping the plans we might have had for travel or evenings socializing with friends, amassing a supply of face masks to last however long this pandemic continues to spread.  Christopher Hutchins, author of Mortality, a collection of essays about his struggle with esophageal cancer, described cancer as “… a  bit like lockdown, you spend your time in treatment, saying to yourself, “I just have to get through this, then I’ll get my life back.” 

Nevertheless, as Susie Steiner remarks, “it has been easier, weirdly, to cope with my illness during lockdown, because I’m not the only one whose life is on hold, not the only one terrified of dying…”   What has comforted her—and what I find I have also found invaluable–are books.  “One thing you can do a lot of when you’re a patient,” she remarks, “is reading.”  

The idea that reading, like writing, are not new. Jenni Odgen, PhD, notes that Sigmund Freud was known to incorporate literature into his psychoanalytic practice in the late 1800’s, and even King Ramses II of Egypt was known to use reading for healing,  keeping a special chamber for his books with the words “House of Healing for the Soul” above the door.

The term “bibliotherapy,” the art of using books to help people solve personal issues, was first used in 1916.  It now takes many different forms, including literature courses for prison inmates to reading groups for elders suffering from dementia (“Can Reading Make You Happier?” by Ceridwen Dovey, New Yorker, June 9, 2015) .  In fact, two or three years ago, I stumbled onto The Novel Cure, written and published by two bibliotherapists, Ella Berthoud and Susan Elderkin in 2014.  Written something like a medical dictionary, it matches ailments and illnesses with suggested reading “cures,” although there was no reference to heart failure or other cardiac conditions, mirroring my own frustration at not finding a wealth of literature (poetry, personal essays, memoir) unlike the abundance of such writing by patients and survivors of cancer. (I did find—and became immersed in — In the Country of Hearts, however a beautifully written l book written in 1990 by John Stone, MD,  that I have returned to more than once, despite it being 30 years old).

Nevertheless, reading,  whether for pleasure, information or healing, helps us to navigate periods of isolation, boredom, and worry.  We feel less alone in our situation.  Dovey cites research that demonstrates how reading puts our brains into a state similar to meditation, bringing the same benefits of deep relaxation and inner calm.  Regular readers, she notes, sleep better, have lower stress levels, higher self-esteem and lower rates of depression than non-readers.  Quoting the author Jeannette Winterson, she adds, “fiction and poetry are doses, medicines…what they heal is the rupture reality makes on imagination.”

My husband and I have been devouring books for the past many weeks.  He’s shifted from a diet of current affairs and research psychology to poetry—much to my surprise—systematically making his way through the wealth of poetry volumes on my bookshelves. I’ve added several non-fiction books to my regular diet of fiction, especially biographies of artists and writers, most recently getting immersed in Maggie Doherty’s The Equivalents, which led me to reading biographies of the women writers who were featured  in her book. 

I have, time and again, found as much or more comfort in reading as when I was a kid, sneaking books to bed and until I was discovered by a watchful parent, reading with a flashlight under the covers, immersed in the stories of others and a world beyond the borders of our small town.  In this time of COVID, books—poetry, fiction, nonfiction—have been indispensable for me to combat the boredom and those days when our moods can turn as grey as a dull overcast day.

In her article for The Guardian, Susie Steiner describes how her reading changed during the course of her cancer treatment, and why she turned to books written by other cancer survivors.  It’s something common to any of us diagnosed with any serious illness or progressive condition.   She was hungry, Steiner said,  for what she called “fellow feeling,” something that books and illness stories of others similarly diagnosed can offer.   As a patient undergoing treatment and feeling the anxiety of what might lie ahead, she writes,  “Living like this is gruelling,” she wrote, “ we need imaginative empathy in fiction to help us through it.” 

This is surely the … therapeutic power of literature – it doesn’t just echo our own experience, recognise, vindicate and validate it – it takes us places we hadn’t imagined but which, once seen, we never forget. When literature is working – the right words in the right place – it offers an orderliness which can shore up readers against the disorder, or lack of control, that afflicts them.—Blake Morrison, “The Reading Cure,” The Guardian/Books/ January 5, 2008. 

My sentiments exactly…

Writing Suggestions:

Have you found particular books, essays or poetry that have helped you understand or describe your experience of living with heart failure or other serious illnesses in some way?

Have you found comfort or inspiration from any books—no matter the subject?

What books, poetry or essays can you recommend to others living with heart failure?  Why?


 

March 18, 2020: A Practice of Managing Worry & Anxiety

…Then what I am afraid of comes. I live for a while in its sight.”  (Wendell Berry (This Day:  Sabbath Poems, Collected and New, 1979-2013 )

I admit it.  The corona virus has me on edge.  Since age and heart failure put me in the “greater risk” population, it may be part of the reason I awaken with the shadow of fear or worry close behind me.  The thing is, I know fear and anxiety are not good for my heart.  It’s a bit ironic, a kind of catch-22, because a diagnosis of heart failure is anxiety producing itself, and it’s progressive, so the undercurrent of unease never quite disappears. And when we’re anxious, it puts extra strain on our hearts, like increasing blood pressure, making us short of breath,  and in more serious cases, interfering with the heart’s normal functioning…nothing anyone living with heart failure or other cardiac conditions needs.

In Japanese, “the kanji (Japanese character) for fear, shows a leaking heart, for fear drains our spirit.                —Stephen Murphy-Shigematsu, PhD

According to Orly Vardeny, Associate Professor of Medicine at the University of Minnesota, “The corona virus’s main target is the lungs. But that could affect the heart, especially a diseased heart, which has to work harder to get oxygenated blood throughout the body…In general, you can think of it as something that is taxing the system as a whole.”  For someone who lives with heart failure, that’s a worry, because my heart doesn’t pump as efficiently as it once did. 

Fear, anxiety and worry all take their toll on my emotional and physical well-being.  While we are in the midst of this pandemic, I have to consciously work to  manage my fearful feelings. I follow all the basic health suggestions:  handwashing, sanitizing, staying away from social encounters, diet, exercise and necessary sleep.  But still, keeping my fear and worry in check requires a bit more self-discipline. Here are some of the things that have been helping me manage my level of anxiety and worry.

I’m limiting my exposure to the constant “buzz” and barrage of reports on social media and in the daily news.  Too much information increases worry, and that can result in panic.  It’s important to be in the know, yes, but as psychologists tell us, there’s a point at which information has the unintended effect of increasing your fear. 

I take a few breaks during the day to simply be quiet.  There’s a feature on my Apple watch that I now use regularly.  Every few hours, it prompts me to do a minute of deep breathing.  I pause, get quiet, and let the exercise of deep breathing for a few minutes lead me into a short period of meditation, freeing my mind of busy brain or any worrisome thoughts.  Simply be quiet, focusing on the here and now is wonderfully calming and relaxing.

There’s a sense of calm in keeping a regular routine, and my morning routine has become even more important to me as a way to quiet any worrisome or fearful thoughts. I’m up early, before my husband awakens, to claim the hour or so of solitude and quiet I crave–and need-for my writing practice.  It’s a ritual of sorts, freshly ground and brewed coffee, my open notebook, my pen moving across the page.

I place no requirements on this time, but write freely.  Whatever emerges on the page hardly matters—sometimes I vent, other times I write poetry or just write freely, staying open to whatever appears on the page.  What matters most is that it is restorative time for me. I watch the sun rise over Lake Ontario on clearer days, or simply notice life on the street below.  Sometimes nature offers a special gift, like the two Canadian geese, honking and waddling about on the rooftop next door, momentarily lost from their flock.  In those moments, I find gratitude—remembering just how lucky I am in so many ways.  And it calms me.

Today I am fortunate

 to have woken up

I am alive.

I have a precious human life.

I am not going to waste it…

I am going to …

expand my heart out to others…

(From:  “A Precious Human Life,” a prayer by His Holiness, the Dalai Lama)

 I’ve found that reaching out to and connecting with family and friends here, in Canada, Japan and the US has also helped to calm my fears.  While I have discovered that  mindfulness helps me to calm, focus, and reduce stress, so does honoring matters of the heart—connecting with people.  As Dr. Stephen Murphy-Shigematsu demonstrates in his book, From Mindfulness to Heartfulness, in worrisome times, our connection to and with one another are even more important to what we call “enlightenment.”  “The kanji (Japanese character) for mindfulness consists of two parts,” Dr. Murphy-Shigematsu explains, “the top part meaning “now,” and the bottom part meaning “heart.”   

All of us share in this worry over the impact of the corona virus, but the simple act of connection, whether online, by telephone, letters or a note written on a  greeting card, serves as a reminder that none of us are alone in our concerns or feelings.  As for my health concerns, I’m lucky to be use Medley, the smart phone app that records my weight, blood pressure, heart rate, and symptoms daily, which is monitored by my healthcare team at Toronto General’s Peter Munk Cardiac Center. This too, provides some solace, a sense of being connected to the people who provide my cardiac care.

Music is a big part of my life, especially classical, and is a necessary ingredient in self-care and inspiration.  It calms, inspires, and reminds me of the beauty and creative spirit that is part of being human.  I’ve also been moved by the inspirational You Tube videos of people in Italy, Spain and Israel, isolated in their apartment buildings because of the impact of the corona virus, playing and singing together from their balconies.  Last week, I discovered cellist Yo Yo Ma has released a series of videotapes on Facebook, the first “song of comfort” he offered was  Dvořák’s Going Home. Ma explained:  “In these days of anxiety, I wanted to find a way to continue to share some of the music that gives me comfort.” Yesterday’s  offering was  “Sarabande” from Bach’s Cello Suite No. 3, which he dedicated to the healthcare workers on the front lines.

So, we all ride it out, taking the necessary precautions, finding ways to stay connected, keeping our fear in check, and weathering this crisis, alone and together.  I find I’ve been thinking of my mother, whose admonitions and homespun prescriptions often had my siblings and me giggling behind her back. Yet she’d suffered more than a little hardship in her younger life, and looking back, I realize her many “mantras” was her way of coping and getting through tough times.  We were too young to understand it then, but we suffered from pain, illness or even an adolescent broken heart, she repeated one favorite mantra again and again:  This too shall pass, she’d say And yes, so too will this crisis, but for now, my challenge is to do all I can do to remain healthy and not be swept up in panic or fear. And frankly, that requires a little practice every single day.

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

(“The Peace of Wild Things,” by Wendell Berry, in:  Selected Poems, 1998)

For the Readers:

What is helping you get through this time?  How are you managing your worry or fears?   What resources or suggestions can you offer to others?  Feel free to comment on this post with some of your suggestions.   For now, stay safe; stay well.

February 25, 2020: Writing & Sharing the Stories of Illness

When the heart speaks, take good notes—Joseph Campbell

“A patient is, at first, simply a storyteller,” Siddhartha Mukherjee wrote in The Emperor of Maladies:  A Biography of Cancer, “a narrator of suffering—a traveler who has visited the kingdom of the ill.  To relieve an illness, one must begin, then, by unburdening its story” (p.46).

Last week, a group of heart patients began unburdening their stories of heart failure and disease.  They were  attending my first expressive writing workshop for heart patients at the Ted Rogers Center for Heart Research in Toronto.  Advertised initially for heart failure patients, those who signed up included those living with cardiac disease, heart transplants and heart failure.  We began, after a brief introduction and discussion of group guidelines, with a first exercise, describing  the moment they were first diagnosed with a failing heart, then exploring two more writing exercises before the workshop ended two hours later.  

After each exercise, the participants were given the opportunity to share, if they wished,  what they had written with one another.  It’s always a little intimidating to read your writing aloud to others, but as I have always experienced in my cancer workshops, the sharing of our stories with one another that adds even more power to the experience of writing about illness, pain or suffering.  By the end of the two-hour workshop, every person had shared something they’d written at least once. 

It’s in the act of writing and sharing our stories that can help overcome the loneliness and pain of living with a serious illness, trauma or loss.   We are our stories, and in the act of sharing them, we affirm our uniqueness and discover is most meaningful. “I did not want my questions answered,” sociologist Arthur Frank stated in describing his illness.  “I  wanted my experience shared” (At the Will of the Body:  Reflections on Illness, 2002).

Sharing our stories does something else for us—they help to alleviate loneliness, something  that many heart patients experience, and loneliness is not good for our health.  Stories are the language of community, about telling the human story.   In writing and sharing our stories with one another,  we discover we are not alone.

To relieve an illness, one must begin, then, by unburdening its story…  In the final exercise I offered in last week’s workshop, we turned from the physical heart (and the experience of heart failure) to the “other” heart, the metaphorical one, long considered the “seat of emotions,” and to what we carry in our “other” hearts.

In order to make you understand, to give you my life, I must tell you a story…stories of childhood, stories of school, love, marriage and death. – Virginia Woolf

The participants were given a handout and on the final page, they found  a large blank heart on the final page with a quote by e.e. cummings, “i carry your heart with me (i carry it in my heart.”)  I spoke briefly about “the other heart” before asking three separate questions.  The first– “who are the people you carry in your heart?–followed by two more:  “what are the events or experiences you carry in your heart?” and “what places do you carry in your heart?”

These stories, yours, mine—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. – William Carlos Williams, MD and poet 

Everyone had about 2 minutes to write their responses to each of  questions I asked on their blank hearts.  Then, after giving them a few minutes to study  what they’d written on their blank hearts, each person chooses one of the items, whether a person, event or place.  They were then asked to write the story of the one thing they’d chosen, and again, given time limits, 15 minutes to write.  Pens flew across the page as everyone wrote quickly.  Then, in pairs, they shared their stories with each other.  A steady hum of voices filled the room as they each read aloud.

I watched, remembering the words of novelist Alice Hoffman, writing in the New York Times after her recovery from breast cancer, said “Cancer need not be a person’s whole book, only a chapter.”  I think it’s just as true of heart failure—it is not our entire book.  “Still, she continued, “…some chapters inform all others.  These are the chapters of your life that wallop you and teach you and bring you to tears” (August, 2000).   

Heart failure is also one of those chapters.  We are closer to the awareness of mortality.  We are forced, again, to learn about ourselves, our bodies, our lives.  Writing gives us a way to understand and make sense of life at every stage.  It affirms us, our lives and legacies.  Afterall, as Jim Harrison said in the final line of his poem, “Larson’s Holstein Bull,”  “Death steals everything but our stories” (In Search of Small Gods, 2009).

“Stories are antibodies against illness and pain,” Anatole Broyard wrote in the final years of his life (Intoxicated by My Illness, 1992).   Our stories help us remember that our lives are not only defined by a serious illness.  As Hoffman said, illness is not “our whole book.”   Stories shared with one another are also antidotes to  loneliness.  What I’ve consistently experienced in my years of  leading writing workshops is testimony to the power of story to create a strong sense of community and support when  written and in a safe and supportive environment.  It’s why writing can be healing.

Stories—the small personal ones that bring us close as well as those of the larger world—foster compassion.  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 Suggestion:

What stories do you carry in your heart?  Try following the steps described in our third workshop exercise. 

  • You’ll need to a sheet of 8 1/2 x 11 paper.  Draw the outline of a heart on the page (a large one, filling the page). 
  • For each category, people, events or place) give yourself no more than 2 minutes to write the names or title of people you carry in your heart, then events, and finally places.
  •  Once done, take another couple of minutes to study your heart and what names you’ve written on it.
  •  Choose just on, from any of the three categories; set your timer for 15 minutes and begin writing, telling the story of what one thing you’ve chosen. 
  • hen you’re finished, put it aside—re-read it later.
  • Reflect on what you’ve written.   What stands out?  Ask yourself, why was that (person, event or place) so important to you? 
  • You may want to continue writing about it, fleshing out more detail in your narrative.

Dec. 29th: One Guiding Word for the Year Ahead

For the past week or so, I’ve been playing around with words, exploring meanings and synonyms, consulting dictionaries, thesauruses, poetry and other books for the single word that will serve as my guiding intention for 2020. It’s a practice introduced to me by a friend nearly ten years ago, and one I have embraced wholeheartedly.  Unlike the old practice of making new year’s resolutions, choosing a single, guiding word has become an enduring annual practice that has stuck.  It takes time, thought, and patience, but I find the process of choosing the one word that will frame my intentions forces me into much deeper thought and consideration than the many new year’s resolutions I used to write, which often were forgotten by February.

Choosing a single word to frame the practices or actions for the coming year is not, I’ve discovered, an easy task.  Each year, sooner after the busy holidays, I begin the process.  I review words I’ve chosen over the past several years, remembering what I wanted to achieve, why the word captured my intentions.  Then I think about what’s changed in the current year or what I would like to do differently.  I spend time writing, fooling around with words, as I brainstorm, consult the dictionary, thesaurus, books from my shelves and favorite poems, hoping “the”word will suddenly be discovered.   Yet it never happens quite that way.

What happens is an inevitable process that leads me into deeper territory, forcing me to articulate how I want to live or what I hope to accomplish in the new year ahead, reflect and reconsider my choice of a word.  Several pages of my notebook now have several words listed on different pages, quotes from poets and writers, musings on the past year, as the intentions I have for the year ahead.

Last year, my word was “flourish,” which emerged after a year of preoccupation with my health and my husband’s.  I look at it now as I write, feeling a sense of having been true to my intent:  volunteering, leading workshops, traveling, and ensuring my days were active as much as possible.  At the same time, the past year had its stresses:  having our apartment flooded three times in the summer by with leaking caused by a forgetful tenant living above us, thus prompting yet another move, the third in three years, and despite looking forward to a different apartment, moving is simply a source of stress.  I spent much of December with an aching back, packing and unpacking, irritable and tense, eager to put my life back in order and restore some sense of calm.

Several days ago, I began the process of choosing my word for the coming year, writing each morning before dawn, when I have the quiet and solitude to truly think and reflect.  Words like balance, quiet, stillness, serenity and peaceful appeared on my growing list.  I turned again to the book, The Art of Stillness (2014), by writer Pico Iyer.  Stillness, he reminds us, is taking the time to be fully present in the moment, a time to clear away the static,  clarify and discover what is truly important.  As Iyer says, taking that time “isn’t about turning your back on the world; it’s about stepping away now and then so that you can see the world more clearly and love it more deeply.”

Of the little words that come                                                                            out of the silence, like prayers
prayed back to the one who prays,
make a poem that does not disturb
the silence from which it came.

― Wendell Berry, “How to Be A Poet (To Remind Myself,” in Given, 2006)

I kept exploring, writing, and reflecting on what I want for the year ahead.  More words appeared on my list, then this notation:  “A state of calm is what keeps cropping up for me as I consider these guiding word possibilities for 2020.  Calmness, breath, quiet in heart and in mind…”  “When you are calm…still,” Buddhist teacher Ticht Nhat Hahn wrote, “you see things as they truly are.”  His words were similar to those of the Dali Lama:  “The greater the level of calmness of our mind, the greater  our peace of mind, the greater our ability to enjoy a happy and joyful life.”

Last night I shared my word search with my husband.  “I keep returning to the sense or state of calm,” I said, then listing some of the synonyms I’d been exploring.

“Calm sounds like a good word,” he said.   Yes, I thought, but is it calm or is it stillness?  I went to bed last night with the words playing in my head.  “Breathing in, I calm body and mind,” Ticht Nhat Hahn said.  “Breathing out I smile.”

This morning, I returned to my list of words once more, finally settling on “calm” as my word for 2020.  Its synonyms include stillness, tranquility, and serenity.  I have typed it out and placed it it in a small two-inch frame that sits on my desk next to my computer, a daily reminder of  the peacefulness and quiet I want to incorporate more fully in my daily life–particularly on the heels of some very stressful months.  It is that calm, the quiet in heart and mind, that is so important, not only to my creative life, but to my life as a whole.  I am reminded of Wendell Berry’s wisdom, expressed in his book of poems, The Timbered Choir (1999)

…“Best of any song
is bird song
in the quiet, but first
you must have the quiet.” – p. 207

As we celebrate the passing of another year, I wish you a year of peacefulness, healing and new joys!  Happy New Year, 2020!

Writing Suggestion:

  • Do you practice the “one word” exercise for the year ahead? If so, why have you chosen the word you have for 2020?  Write about your process of choosing your single word.
  • If not, why not try defining your intention for the new year in the “one word” exercise. What one word can serve to guide your intentions for the year ahead? It may take more than a few attempts, but enjoy the process of finding that single word that crystallizes your hopes and intentions for 2020.
  • Once you have chosen your word, then write for 20 or 30 minutes and explore the “why” behind your word.
  • What meaning does it hold? What memories or images spring to mind?  I invite you to share your word choice and a few sentences about it in reply to this week’s blog.  Frame or post your word where you can see it on a daily basis.

The Way It Is

There’s a thread you follow. It goes among
things that change. But it doesn’t change.
People wonder about what you are pursuing.
You have to explain about the thread.
But it is hard for others to see.
While you hold it you can’t get lost.
Tragedies happen; people get hurt
or die; and you suffer and get old.
Nothing you do can stop time’s unfolding.
You don’t ever let go of the thread.

By William Stafford, from The Way It Is, 1998

Heart Failure as Teacher

…two roads diverged in a wood, and I — 
I took the one less traveled by, 
And that has made all the difference.

(From “The Road Less Traveled,” by Robert Frost)

It’s a familiar poem, one you were likely introduced to it in a high school English class.  Frost’s portrayal of a traveler choosing a direction as he comes to the fork in a road is a metaphor for life. We make choices daily, between one thing and the other, weighing one possibility against the other, assessing the benefits, costs, and risks.  Sometimes, our hearts wage war with our minds, our dreams with reality; other times, old habits, patterns and drives learned in childhood play repeatedly, pushing us toward old ways of being, even when our hearts cry “no!”  Ultimately, we have choices, deciding on one course of action over another.   Whatever we decide, we live out our choices, and our lives are changed by the choices we make.  Call me a slow learner, but my heart is winning that persistent battle between old ways of being and the way that, now, I am trying to live. 

     How we spend our days is, of course, how we spend our lives. –Annie Dillard

Living with heart failure has made me more aware of mortality and the relative shortness of life.  “It’s not that we have a short time to live,” the Roman philosopher, Seneca wrote in his treatise, On The Shortness of Life, but that we waste a lot of it…life is long if you know how to use it.” 

Being a patient with heart failure has forced me to consider the “busyness” of the life I’ve led for the bulk of my adult years. Busyness driven by the need to achieve, something drummed into me early in life, and, when I don’t, feeling guilty or somehow inadequate.  It’s meant that for much of my life, as my husband and daughters would tell you, I have a very difficult time saying “no” to other’s requests for my participation in activities, initiatives, committees and the like, often pushing my desires aside to meet other obligations and living with more stress than is healthy.  It’s hardly a surprise that years of New Year’s resolutions to make more time for fun, relaxation, and even family, have rarely been successful for long.  Again, Seneca: “learning how to live takes a whole life.”  Perhaps I’m starting to understand what he meant. 

Some of my greatest teachers, as it turns out, are the cancer patients who join my expressive writing groups.  Week after week, they write, sharing their fears, questions, and lives through their stories and poetry.  They write with honesty and authentically.  Writing is the mechanism by which they release all the feelings–many of them conflicted–triggered by a diagnosis of cancer.  For some, they come to the group to write knowing they’ve been given a certain death sentence.   The suffering is real; the treatments often debilitating with surgeries that permanently alter their bodies. 

Two weeks ago, I led three workshop sessions for a group of young adults who had survived childhood cancer.  Survived, yes, but many who still bear the evidence of an aggressive and unforgiving illness, and who already are experiencing serious and long-term health issues from their disease and its treatment.  The clarity with which they write about the lives they intend to live–and are living–inspired and, at the same time, humbled me.  I came away grateful for their honesty, awed by their courage and determination to live life as fully–and meaningfully–as they can for however long they might live.

When I first returned to Toronto after several years living in California, I was eager to get involved in the work that I’ve found so meaningful, and Gilda’s Club welcomed me immediately.  But I was also inspired by discovering a vital and growing community for heart failure advocacy.  Besides, I have one very inspiring cardiologist in Dr. R., and when she asked if I wanted to be engaged, I said, “absolutely.” 

That’s still true, but it’s taken me the better part of a year and a half to define how I want to be engaged.  And that requires choices.  I slipped, all too easily, into old ways of being, saying “yes” to committee involvement, reading research like a graduate student, becoming a patient partner…and my life was, for a few months, dominated by heart failure.  That involvement had the effect of making me think more about it–not always in ways particularly beneficial to my fear of progression and my life ending sooner than I assumed.  In short, I was leaning toward depression, or at the very least, a case of the good old-fashioned blues. 

I began writing about it, and this blog was birthed.  But it’s been a challenge at times ( because of all the reasons I’ve written about in the past few months) as I’ve tried to figure out if what I write is helpful or interesting to other heart failure patients.  My “Writing Through Cancer” blog is, by comparison, relatively easy for me to write, but I have years of leading writing groups and hearing cancer patients’ stories as a source for inspiration. Perhaps my struggle in writing this blog has helped me gain clarity, although in ways I have yet to fully articulate, about how I want to live for however long that may be.  Maybe Seneca was right: it does take nearly a lifetime to learn how to live.

As I write this, I recall a poem I used many years ago in a class on writing and healing. Entitled “What Matters Then,” the poet asks the question of the reader and, beginning with a single gardenia on a branch, moves us to the essential, from bush to branch to the single flower.  It’s a winnowing down, something that resonates with me now as I am gaining the clarity to live each day engaged in what truly matters to me.

…What matters then?

A single gardenia broken

from the dark-leafed branch.

What matters then?

The dark leafed bush.

What matters then?

The gardenia.

–Margaret Robison, Red Creek, A Requiem

What matters to me?  That I live as fully as possible each day.  That I have time with my family, husband, daughters and grandchildren.  Especially the grandchildren; they are the best medicine of all for my heart.  That I give back–it’s why I continue to volunteer in leading writing groups for cancer patients and what motivated me to become a patient partner.  That I make time for art and creativity:  writing, poetry, reading, music, art.  That I stay as physically active as I can.  That I practice humility:  there are always new things to learn.  That I recognize and accept my limits.  And not unimportantly, that I practice gratitude as my daily mantra.

What has living with heart failure taught me?  I think it has taught me how to live.  And that’s something, isn’t it?

Waking up this morning, I smile.

Twenty-four brand new hours before me.

I vow to live fully in each moment

and look at all beings

with eyes of compassion.

            -Ticht Nhat Hahn, Buddhist teacher

Writing Suggestions:

  • What have you learned about yourself from heart failure?
  • How has your life changed–in ways that are positive?
  • How do you want to spend your days–to live your life?

August 25, 2019: What Do We Talk About When We Talk About the Heart?

“Are you still writing?” Dr. R. asked as my appointment was ending.  I had admitted, several weeks earlier, that I was struggling with writing this blog.

“Oh yes,” I said, “both blogs, but it’s much easier for me to write the Writing Through Cancer posts than it is for my heart failure site.”

She laughed a little and said, “I think it’s funny that you find it more difficult to write about heart failure.”

We spent a few minutes discussing why that might be so, and that led me to telling Dr. R. about the young woman I had met last weekend.  I was leading a series of expressive writing workshops for a three-day retreat with YACC (Young Adult Cancer Canada).  In my introduction on Day One, I had mentioned my cancer treatment of 20 years ago was believed to be a likely factor for my heart failure condition.  On the final day, the young woman approached me and quietly thanked me for telling them I live with heart failure.  She then said she had been diagnosed with heart failure after her chemotherapy treatment ended several months earlier.  No one, she said, talks about it, not even in her support group, and she experienced a sense of isolation, the same feelings I had when I was diagnosed–and the initial motivation for writing this blog.

Despite the “epidemic” proportions of heart failure, running neck and neck with deaths from cancer, I was surprised, after my diagnosis, of the lack of psychosocial support resources exist for heart failure patients, something I have written about before in this blog.  While I find no shortage of research studies on heart failure or cancer, there are real differences in the “other” literature:  poetry, stories or memoir available those affected by cancer vs. those living with heart failure.  The arts also play a greater part in the broader treatment of cancer, recognizing the healing benefits of the creative self-expression. Not so in heart failure.

“Heart patients don’t talk,” Dr. James Pennebaker commented in an email to me a couple of months ago.  I’d reached out to try to unearth some expressive writing research conducted with heart patients, but the results conducted with individuals vs. those writing together, and were largely concerned with autonomic responses, e.g. lowered blood pressure. He referred to an early study he and his associates conducted in 2000, “Who Talks?” appearing in the February issue of American Psychologist. They looked at different patient illness groups’ (e.g., AIDS, cancer, chronic fatigue, alcoholics, heart disease) use of online support groups.  They found breast cancer patients were among those with the highest use of online support groups, participating at 40 times the rates of all heart patients.  At the same time, the researchers noted additional research was needed on both internet-based support groups as well as the social context of illness.  One benefit of expressive writing groups is that they provide social support, and social support helps to decrease social isolation and depression that often accompanies serious illness.

Yet I cannot help but return to the metaphors we use to describe cancer and the heart.  The most common metaphor for cancer is as the “enemy” or the “invader,” which encourages the sense of battle, even fighting together to combat and destroy cancer.  Think of the many walks and 5 K runs to support cancer research where participants show up in teams and costumes and the sense of solidarity that results.  The heart, by comparison is no invader.  It is one of our vital organs, the engine, and the pump that keeps us living.  The very nature of how we describe and think about the heart may influence how we talk about it–or if we talk about it–with others when it is impaired or failing. 

Cancer patients do talk, and in the expressive writing groups I lead, they delve deeply into topics like fear, the altered body, anger, faith, meaning, loss, or mortality.  I remember when I was leading a writing group for medical students and physicians at Stanford Medical School and during the same period, an expressive writing group in the cancer center.  For several months, I found the medical group was more guarded, less willing to take a deep dive into those difficult life questions, while, from the beginning, the cancer patients wrote openly, poignantly, fearlessly and were more willing to share their words aloud.   

In part, what makes it “easier” for me to write a blog for those living with cancer is related to the willingness of those patients/survivors who write so courageously and deeply of the emotional, psychological and spiritual aspects of a life-threatening illness.  Their narratives and poetry, frequently shared aloud, are a key aspect of what continues to inspire my exploration of the shared themes defining diagnosis to recovery or death.  In a very real sense, the men and women who have written so honestly and bravely out of illness have been my greatest teachers.

The shared experiences, the stories that come from life–joys, sorrows, trauma, illness, loss– are at the heart of being human, how we connect with one another and build a sense of community.  I have found some sense of connection with other heart failure patients since returning to Canada, thanks to Jillian Code and The HeartLife Foundation, and the few heart failure committees where I’ve been “the patient voice.” Nevertheless, I still wrestle with how to dig deeper into that realm of what the “lived” experience of heart failure means:  those emotional, psychological and spiritual questions it ignites.  Maybe I am rolling that proverbial stone uphill, I confessed to Dr. R., but as one who grew up in  gold rush country in California, I still believe “there’s gold in them ‘thar’ hills.”  And I’m still digging for it.

What do we talk about when we talk about the heart?   I would like to hear what you think.

Writing Suggestions:

Writing can help you express those moments when fear, worry, sorrow or other strong emotions arise. 

  • Have you found a support group of other heart failure patients?  If so, describe how it helps you navigate the ups and downs of living with heart failure.
  • What are the questions or concerns you have since you’ve been diagnosed with heart failure?  Do you experience moments of fear?  Depression?  How do you deal with those feelings?  What helps?
  • Do you keep a journal?  Research has also shown that writing in a personal journal or notebook can help you sleep better, reduce fatigue and adjust emotionally and psychologically to illness and other hardships.  There are many different types of journaling.  There is no “wrong” way to journal.  If you decide to begin a writing practice, buy a journal that you’ll use only for the purposes of your    personal writing.  Here are some tips for getting started.
    • Gratitude journalingWrite down everything you’re grateful for. This focuses your attention on positive aspects of your life. A list of five things daily can help boost your mood and spirit.
    • Blog:  A blog is a website that you can easily update by writing short posts. Caring Bridge (www.caringbridge.org) is a health journaling site for posting one’s writing online specifically for those experiencing medical illnesses/conditions. 
    • Stream-of-consciousness writing: Write down everything that comes to your mind. This unstructured, unedited writing will reflect your raw thoughts and observations.
    • Art journaling:  Combine words with drawings, multimedia, doodles, a scrapbook, etc. to express what you are feeling and thinking.
    • Line-a-day  journaling: Limit yourself to a single line or sentence for the day.

As little as 15 – 20 minutes a day for 3 months can produce long lasting benefits to your physical and emotional health.  However, be aware that if you find yourself beginning to ruminate, that is, writing the same negative thoughts repeatedly, stop.  Rumination is not healthy and can make you feel depressed or anxious.  If journaling about experiences and emotions leaves you more upset than relieved, it’s wise to meet with a therapist or social worker to talk about what you’re feeling.  Your journal can be a tool to introduce what feelings, concerns or worries related to living with heart failure.

July 18, 2019: How Writing Helps Us Heal

(Preface:  I began this blog nearly one year ago, and, as the anniversary date approaches, I am looking over my posts and revisiting the motivation that initially prompted me to begin exploring the lived experience of heart failure.  I have always written, whether for myself or for publication.  It’s the way I make sense of life’s difficult chapters, the way in which I discover what I’m really feeling and why, something I have discovered to be healing and the reason why I lead writing groups for cancer patients.  My experiences and teaching prompted me to begin this blog and hope it might also inspire other heart failure patients to write from their experiences.  But have I managed to encourage others like you to write?  I don’t know.  So this month, I’ve changed the name of my blog to “Writing the Heart” and am re-visiting why writing and how can help us heal.)

______________________________________________

When the body breaks down, so does life.  Medicine may fix the body but it doesn’t put one’s life back together. — Arthur Frank, At the Will of the Body, 2002

            You’re lying in a hospital bed as the cardiologist enters the room.  He’s come to explain the results of the tests you’ve had since you collapsed while walking your dog, the reason you’ve been under observation for three days.  He is kind, with a gentle manner that calms you. Then he offers his diagnosis, his words strange and unreal.  “Heart Failure.”

” What?  You mean a heart attack?”  You recall that one of your uncles died of a massive heart attack in his fifties.

“No, heart failure…” and the cardiologist calmly explains that your heart, your pump and life-giving engine, isn’t working as well as it should.  He says something about dilated cardiomyopathy, atrial fibrillation and ventricular tachycardia, unfamiliar terms you’ll ask him to repeat and even then, look up again later. You’re hovering somewhere between the real and the unreal, feeling as if the universe is playing a terrible joke on you.  Your heart.  Failing?  How can it be failing?  You’re thrust into a whirlwind of disbelief and confusion, and, like Dorothy in the Wizard of Oz, feel as if you’ve been dropped into some strange new territory where nothing makes sense.

You’ve just become a heart failure patient.

The doctor speaks again, detailing the specifics of your diagnosis.  He says something about an implanted cardiac device, a defibrillator.  A what?  He may as well be speaking a foreign language.  You listen without really hearing as your world begins to spin out of control.  What you feel is fear — and lots of it.  However, your feelings are not unique.  Any serious or life threatening illness reaches far beyond the physical.  It affects every aspect of your being, including your mind, emotions and spirit.  There’s no cure for heart failure, and most of us are not heart transplant candidates.  ICDs, medicines, even surgeries, can help manage the condition for some time, yet we all must come to terms with what it means for our lives, how we can live for as long and as fully as we can and how we adjust to an altered physical self and navigate the emotions that accompany heart failure.

It’s why I write.

I write about illness to work out some terms in which it can be accepted…experiencing it fully, then letting go and moving on.  — Arthur Frank, sociologist, writing about his heart attack and prostate cancer, At the Will of the Body, 2002)

I’ve written since I was a young girl, sorting through the emotional ups and downs of my teenage years, and later, as I matured,  through young love and broken hearts. Then, thirty years ago, my husband drowned, and my life changed overnight.  I turned to what had always been my lifeline in times of change and struggle:  writing.  Several years later, I was told I had cancer, and writing was my refuge, a way to safely express my turbulent emotions, translate them into words and make sense of them.

Give sorrow words,” Shakespeare wrote in Macbeth. “the grief that does not speak/whispers o’er the fraught heart and bids it break (Act 4, Scene 3).  I was experiencing what poets and novelists alike had long acknowledged. Writing helps us make sense of trauma, illness and loss.  Then, over two decades ago, psychologists began to study the effects of writing on health in earnest.  As psychologists James Pennebaker and Joshua Smyth described, expressing difficult emotions on paper and getting them outside the body, had measurable health benefits (Opening Up by Writing It Down, 2016).

Writing…about traumatic experience …can produce measurable changes in physical and mental health, … can also affect people’s sleep habits, work efficiency and how they connect with others.  –Dr. James W. Pennebaker, PhD, University of Texas

The psychologists gave this kind of writing a name:  Expressive writing, defined as personal writing about a difficult or stressful event without attention to form, grammar or spelling.  It’s a process of pouring out one’s emotions and thoughts on the page,  less about what happened and more about what you feel about what has happened.  Now, over 400 studies on the effects of expressive writing have been studied with many different populations, demonstrating its various health benefits such as lessened anxiety, improved quality of sleep, lowered heart rate and blood pressure, and strengthened antibody responses.

But writing does even more for us.  It helps us deal with strong or difficult emotions, express and describe stressful and traumatic events, and organize thoughts and feelings.  Writing is about meaning making.  It helps us with understanding and self-awareness.  Writing can help connect us to others.

How?  As his research continued, Pennebaker discovered that the most healing kind of writing did more than simply express difficult feelings, something novelist Anais Nin had noted many years earlier.  “When we see our suffering as story,” she wrote, “we are saved.”  Simply venting emotions doesn’t do enough to relieve stress and improve health.  But when you make connections between what you feel and why, your writing begins to take on shape and form.  It becomes a coherent narrative– a story– and that’s the kind of writing that Pennebaker and his colleagues found is the most healing.  Stories are the way we communicate with one another, and they are the currency in medicine shared between doctor and patient.

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)

The power of writing to heal is something I witness repeatedly in the writing groups I lead for cancer patients.  In the few weeks together,  participants move from the raw, emotional writing typical of the first meeting, and gradually, begin to write stories into stories, poetry, or personal narratives that express and explore their illness and lives.  Invariably, they move the writer to new understanding, insight or meaning.  Their shared stories also build connection and community between people, helping to overcome the loneliness and isolation often created by a serious illness.

Writing is healing, in part, because it is transformative.  As your stories change, so does your life. You gain new insights and perspective, not only in how you see your life, but the way in which you act on it too.  That’s the power in writing to heal.  A pen and a notebook are all you need.  What matters most is that you write, freely and honestly without worrying whether or not it’s “good enough.”  It’s your story, and as author Dorothy Allison so beautifully reminded her readers, “I am the only one who can tell my story and say what it means.”

Why not explore writing’s power to help you heal?

Writing Suggestions:

  1. Two Prompts Get You Started:
  • The moment whenThink about the very first moment you were told you had cancer. Close your eyes and try to remember as many details as you can, for example, the setting, quality of light, things in the room, sounds, where you sat, and so on.  Then think about that moment just before you heard the word “cancer.”  The look on your doctor’s face, his/her body posture, or the ringing of the telephone.  What were you feeling?  Now write for 15 minutes, taking yourself into that moment gradually by describing as much detail as you can.
  • Write a letter to your heart. Once during every series of workshops, I ask the participants to address their illness directly.  It takes the form of a letter, one in which you say what you feel about your illness directly to your heart.  Here’s an excerpt from a “letter to cancer” written by a former cancer writing workshop member:

Cancer:  You entered my life without my permission. You tried to turn my body against me, leaving pain and uncertainty in your wake… Because of you I wondered if I would see my children grow up… You made me feel like less of a woman …You took my hair and scarred my body. You made me cringe at my own reflection in the mirror… (former writing group member)

  1. Beginning to Write
  • First, get comfortable in a quiet place.
  • Keep your writing in a spiral bound notebook (or file on your laptop) so you can, from time to time, re-read old entries and reflect on your changes.
  • Set the timer for 15 minutes, and write about anything, but do it without stopping. Don’t worry about spelling, punctuation or grammar.  Just write.
  • When the timer goes off, read what you’ve written, then put it aside for a day or two.
  • Then re-read. Highlight those passages that stand out for you.  Why?  If you feel like it, you can expand on what you’ve written or even revise your first attempt, but that’s optional.
  • Find a time two or three times a week when you are able to write without interruption. It doesn’t have to be much.  Set a timer for 10 or 15 minutes and begin with anything, even “I don’t have anything to write this morning…” but keep the pen moving until the timer stops.  You will gradually write your way into what’s important.  Try making writing a part of your healing.

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Are you interested in sharing some of your writing with other heart failure patients?  I’m adding a new page to this site, “Voices of Heart Failure,” to create an opportunity for heart failure patients to share some of their writing with others.  If you’re interested, you can contact me by clicking HERE, and I’ll respond with specific information about submitting, getting permission to publish, and details about the kind of writing to be featured.– I look forward to hearing from you.– Sharon

June 17, 2019: In the Surgical Waiting Room

We sit on the bench in the hospital corridor
next to the cafeteria, and we wait.
You know what waiting is.
If you know anything, you know what waiting is.
It’s not about you.
This is about
illness and hospitals and life and death…

(From: “What Waiting Is,” by Robert Carroll, 1998)

I’ve sat in waiting rooms more than a few times in my life, like the anxious hours at Sick Kids when my then twelve-year-old daughter underwent hip surgery or sitting in the over-crowded surgical waiting room while my husband had a cancerous kidney removed.  For those of us confined to the surgical waiting room for the news of the surgical outcome, the hands of the clock move slowly, despite how many times we check it.  It’s the agony of waiting.

“Here, stress, anxiety, uncertainty and fear serve to make even the shortest of waits seem unbearable.  Families sit crouched forward in their uncomfortable chairs watching the door in hopes of preservation of a life or, unfortunately, sometimes by a less desirable outcome.”  –Kevin Campbell, MD, “The Psychology of the Surgical Waiting Room: Personal Adventures in Waiting,” 2012)

There have also been times that my spouse has waited for me to undergo surgery, as he did again last Friday.  But this was a waiting experience we ended up sharing–something we hadn’t anticipated would occur.  I was scheduled for a “pocket revision” and replacement of my ICD in the hospital’s day surgery unit.  Even before we sat down,  I was nervous.  While the procedure is considered routine, the prospect of general anesthesia and any kind of surgery are always anxiety producing for me.  I’m not unusual.  Studies have consistently demonstrated that the waiting experience for same day surgeries adds stress to patients who are already anxious.

Yet I had no idea that my day would become as stressful as it did.  We’d arrived at the hospital at 9 a.m. for blood tests as required, waiting nearly an hour for my name to be called.  But we were upstairs and checking in the Surgical Admissions Unit at ten o’clock, just as I’d been directed to do.  I was somewhat alarmed to see the waiting rooms nearly full, but I pushed my concern aside, opened up a book, and began reading.

One by one, patients were called in to exchange their clothes for a hospital gown and taken to the pre-op section.   Sometime after 1 p.m., I finally approached the nurse stationed near the waiting area.  Did she have any idea of how much longer I’d be waiting?  She apologized, saying patients had arrived all at once  with some even coming late, but, she assured me, there were just two more patients in front of me.  An hour and a half later,  my husband and I were the only occupants remaining in the waiting room.  I was thirsty, hungry, and increasingly anxious.  And by the time the nurse  ended her shift and the cleaning staff person appeared, I was downright worried.  Finally, an hour later, after the operating nurse appeared and told me my surgery would need to be rescheduled, I was a wreck.  Downcast and exhausted, we left nearly seven hours after we’d first arrived earlier that morning.  It was a waiting ordeal I have no desire to repeat.

But we are all forced is forced to wait many times in our lives.   I think of those heart patients who wait–with hope, with fear–for heart transplant surgery and finding a suitable donor.  I hear cancer patient’s stories of the waiting they do for referrals, tests, surgeries, treatments–all the while wondering, as Susan Gubar describes, “who knows what appalling cells are conspiring within my body to destroy my being?” (In “Well,” New York Times, 03/12/15).  I read “Waiting” (2008), a short story by E.C. Osondu, describing how refugees wait in a camp, their homes destroyed by war, without water or food, hoping and praying for relief, for rain.  These experiences help me put my waiting experience in perspective–it’s little more than a minor irritation by comparison.

“Every watch is broken in the waiting room, ” Nurse Sonja Schwartzbach writes, “better to count your blessings than to measure the seconds.”  Dr. Kevin Campbell suggests there are four common themes to our psychology of waiting:

  • Unoccupied time feels longer than occupied time.
  • Anxiety makes waits seem longer.
  • Uncertain waits seem longer than finite waits.
  • Solo waits seem longer than group waits.

Dr. Sheila Wijayasinghe, writing in a recent Globe and Mail column, offered a physician’s perspective on the time patients spend waiting.  “No doctor likes running behind,” she wrote, “and most try to keep on time out of respect for patients’ schedules and busy lives.  But even with the best of intentions, we end up running behind due to unpredictable circumstances.”  This is likely truer in a day surgery unit than even a physician’s office, especially when it’s surgery that involves the heart.

Nonetheless, waiting has never been easy for me–I am action-oriented, even impatient at times, despite my best attempts to quell my toe tapping tendencies.  My surgery has been rescheduled for tomorrow.  I’ll arrive on time, take my place in the waiting room, and while the time may seem to drag on slowly, I’ll have to accept what I cannot control, to let things unfold as they will.  Eventually, my new ICD will be in place, and I won’t be waiting–at least not for that.  After all, this is life, and it will surely require, more than a few times, that I wait.

What you do with time

is what a grandmother clock

does with it:  strike twelve

and take its time doing it.

You’re the clock: time passes,

you remain.  And wait.

(From “Mother,”  by Herman de Coninck, In:  The Plural of Happiness, 2006)

Writing Suggestions:

  • What do the words “waiting room” conjure up for you?
  • Write about an experience you’ve had in a doctor’s or hospital waiting room.
  • What was the situation? Were you waiting for a loved one?  Or were you waiting for a procedure?
  • What did you experience?  What was the outcome?
  • Write about the “helplessness” of waiting.

 

 

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?

 

February 3, 2019: What Do You Want in A Doctor?

A three thousand year tradition, which bonded doctor and patient in a special affinity of trust, is being traded for a new type of relationship.  Healing is replaced with treating; caring is supplanted by managing, and the art of listening is taken over by technological procedures.  — (The Lost Art of Healing:  Practicing Compassion in Medicine, by Bernard Lown, MD, 1996).

I recently changed from one family physician to another.  When we first returned to Toronto after many years in California,  I’d endured weeks of frustration of trying to find a family doctor.  After several referrals that only resulted in “I’m sorry, Dr. So & So is not taking any new patients,” I finally found a doctor, recently graduated from medical school, who was taking new patients. Given my medical history, I had concerns about becoming a patient to a doctor without significant experience, but it seemed I had little choice but to sign up.

Our was discussion at the first meeting was relatively brief, but I reasoned that with more than a few medical experiences and my age, I was not at all shy about asking for referrals or expressing concerns.  I pushed my reluctances aside and became her patient for an entire year, but all the while, experiencing a vague concern about a lack of connection or trust.  While I never had difficulty being seen my appointments rarely lasted beyond 10 – 15 minutes.  As I’d begin describing the issues or symptoms that prompted  my appointment, she typed, her hands flying across her keyboard while I spoke.  Her questions were few, and even as I left her office with a referral or prescription in hand, a sense of unease lingered.

Paracelsus, the great German physician of his era, included among the basic qualification s of a physician “intuition which is necessary to understand the patient, his body, his disease.  He must have the feel and touch which makes it possible for him to be in sympathetic communication with the patient’s spirit…the aim is to understand the medical problem as well as the person behind the symptoms.  (Lown, p. 3, 29)

To be clear, I feel very lucky to have had the experience of being a patient of two extraordinary physicians; one, a neurosurgeon,  early in life, and the other, my current cardiologist.  Dr. C., my neurosurgeon, literally saved my life when I was a teenager, and I quickly discovered that he saved–and touched–many more lives than my own.  Patients’ faces lit up when he walked into the room,  radiating compassion, warmth, and optimism.  He listened intently to my fears and questions, laughed at my attempts to introduce humor into my condition, and held my hand when tears overtook me.  Once I was was well enough to be mobile, he encouraged me to visit with other patients in the hospital–which I did, witnessing the sorrow of a young mother whose two-year-old son was dying or another teenager with head trauma from a car accident, neither as fortunate as I was.   Intended or not, he was teaching me about compassion and healing.  Dr. C.  operated on me twice in less than a year,  and long after I’d resumed a normal life, I continued to stay in touch with him throughout high school, college, marriage, and my career journeys  He always replied, writing in an elegant cursive, once telling me how much it meant to him to hear from me–saying that a doctor didn’t often hear from former patients.  When he died a few years ago, the expressions of gratitude were numerous from those whose lives he’d touched.  Dr. C. was an extraordinary neurosurgeon, but he was also a healer–and that required far more than his technical expertise and scalpel in treating his patients and saving lives.  Now, in the autumn of my life, I’ve been fortunate to experience, once again, not only considerable knowledge and expertise, but compassion from the cardiologist who deals with the matters of my heart.  It makes a significant difference to me as a patient.

“Choosing a doctor is difficult because it is our first explicit confrontation of our illness…to be sick brings out all our prejudices and primitive feelings…You don’t really know that you’re ill until the doctor tells you so…The knowledge that you’re ill is one of the momentous experiences in life….When the doctor told me I was ill it was like an immense electric shock… I began to look around me with new eyes, and the first thing I looked at was my doctor…  Now that I have cancer of the prostate, they lymph nodes, and part of my skeleton, what do I want in a doctor? pp. 36-38).

Heart failure, cancer–these are “momentous experiences” in our lives. In my expressive writing workshops with cancer patients, I encourage participants to write about their medical experiences with various doctors, asking,  “What do you want in a doctor?”  I was inspired to do so after reading Anatole Broyard’s book, Intoxicated By My Illness (1992), a collection of autobiographical essays written during his prostate cancer treatment and published two years after his death.  In Part Three, “The Patient Examines the Doctor,” Broyard attempts to answer this question in an attempt to understand his feelings about his doctor.  He describes several characteristics he would like to have in his doctor:

.  a doctor with magic as well as medical ability

.  a close reader of illness and a good critic of medicine

.  someone who enjoyed me

.  gropes for my spirit as well as my prostate

.  surveys my soul as well as my flesh

.  understands that beneath my surface cheerfulness, I feel…panic

Invariably, the responses to the question of what Broyard wants in a doctor are powerful, some revealing that his experience might reveal what some call the loss of the human touch in medicine.  “Not every patient can be saved,” he writes, “but his illness may be eased by the way the doctor responds to him”  (p. 57).

Several years ago, I posed the question “What do you want in a doctor?” to a group of cancer patients.  One woman wrote as if she was addressing her oncologist in a letter, describing her feelings about her most recent appointment with him.  She had been his patient for over a decade, but that day, he’d given her the news no one wants to hear.  Her cancer had metastasized and spread throughout her body.  Yet he had delivered this news without the warmth and compassion she had come to expect.

“I’ve been his patient for ten years,” she said, tears welling in her eyes. “We’ve developed a close relationship in all that time,  but he wouldn’t even look at me when he told me this news.”   The group members listened quietly, passing her tissues as she began weeping, and at the end of the session, many offering her hugs.  What no one expected, however, was see her return the following week, her face wreathed in smiles.   She told the group  she’d made an follow-up appointment with her doctor and mustered the courage to share the letter she’d written in the group describing the pain she felt in the manner he’d delivered what was, clearly, her death sentence.  What happened next, she said, was an apology and his honest admission that he was trying to control his own feelings, the immense sorrow he felt as he began conveying the results to her.  The hurt and distress she’d felt was eased.  She was calm and smiling as she shared their conversation with the group, reassured that despite having only a few months of life left, her doctor would be there with her until the end.

Even when cure is impossible, healing is not necessarily impossible.  While medical science has limits, hope does not.  I believe the maxim proposed by Dr. Edward Trudeau about a century ago:  “To cure sometimes, to relieve often, to comfort always.”  The miracles reside in the capacity for comforting and healing (Lown, p. 319).

About Dr. G.

He goes out of his way every time to ask how

I’m doing.  He is the tree whispering through

the cracked hospital window, the shiver of white

narcissus, the breeze lifting the skirt of the nurse

opening my door.  He is the song in my head that

doesn’t stop at night, the way curious medicine

wanders my blood–I no longer go out of my way to

picture the mound of earth dug just my size.

Sometimes someone touches your hand in an

unexpected room and you close your eyes

like the lid of a music box that’s been wanting

quiet for years. When I start to die, this is

how it will be:  no terrible music, no one taking

my place, his footsteps in silence carrying on.

By Ann E., (1955-2013)

poet & cancer patient

I have a different family physician now.  Quite unexpectedly, my daughter’s doctor’s practice opened up for a limited number of family members of her existing patients.  I made an appointment for a consultation, and during our conversation, experienced a sense of connection and trust I’d found so elusive with my former family doctor.  While I appreciated the warmth of this doctor, more importantly was the time she took to ask and answer my questions, listening attentively to what I had to say.   “Trust in a doctor,” Bernard Lown writes, “is also fostered by the thoroughness of history-taking, by questions about work and other social issues…by expressions of genuine solicitude for serious problems” (p. 330).  I left her office feeling a sense of relief and calm.   I’d found my new family doctor.

Writing Suggestions:

  • Try answering the question:  “What do I want in a doctor?”  Why are the things you want important to you?
  • If you have, as I have had, a doctor who inspires your trust and confidence in your care, what are the qualities or behaviors that contribute to your feelings about your doctor?
  • Write a narrative or poem about a doctor who has made a difference in your life.