April 21, 2021: Why Sharing Our Stories Matters

To be a person is to have a story to tell. — Isak Dinesen

It’s been nearly a week since our first six-week “Writing the Heart” group met.  The session was –dare I say it? —heartwarming, filled with candor, poignancy and shared laughter. Twelve people living with a variety of cardiac conditions met on Zoom for the first time, as far away from Toronto as Prince Edward Island to the east and British Columbia to the west.  Candor, poignancy, even humor punctuated the sharing of what different group members had written. Again, I witnessed not only the healing power of expressive writing, but how coupled with reading aloud and sharing with one another, the therapeutic value of expressive writing is multiplied. Storytelling is synonymous with being human.  Our ancestors told stories as a way to make sense of their worlds.  Stories were the mechanism by which traditions and wisdom were passed from one generation to another.  “There have been great societies that did not use the wheel,” author Ursula LeGuin once said, “but there have been no societies that did not tell stories.”

There is something in us that yearns to tell the stories of our lives and have them listened to in return.   Not only do our stories give us way to engage with one another, but in doing so, we discover common themes and experiences. —Mimi Guarneri, MD, The Heart Speaks, 2006 (p. 76). 

What is it about sharing our stories that makes them so important?  Storytelling, as several researchers suggest, is a powerful tool for both patients and healthcare providers.  The significant body of research by James Pennebaker, PhD and his colleagues  has demonstrated that forming a story from one’s life experiences is associated with improved physical and mental health, whether written or verbal.  It offers individuals a way to give voice to the experience of illness and, in turn, to begin to confront it and their questions of care and mortality.

 Stories offer insight, understanding, and new perspectives. They educate us and they feed our imaginations. They help us see other ways of doing things that might free us from self-reproach or shame. Hearing and telling stories is comforting and bonds people together….Being able to narrate a coherent story is a healing experience.2,3… stories keep us connected to each other; they reassure us that we are not alone.Miriam Divinsky, MD, Can Fam Physician. 2007 Feb; 53(2): 203–205.

Increasingly, the skills of storytelling have begun to be recognized as invaluable to improved health communication, thanks to the groundbreaking work of Dr. Rita Charon, the creator of “narrative medicine,” a medical practice that uses patient stories in clinical practice, research, and education as a way to promote healing.   “Telling and listening to stories is the way we make sense of our lives,” according to Dr. Thomas Houston.  “That natural tendency may have the potential to alter behavior and improve health.”    Interviewed in a 2011 New York Times article, he said, ” We learn through stories… It’s a natural extension to think that we could use stories to improve our health.” https://nytimes.com/2011/02/10/heath/views/10chen.html

 Their 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. —Advice to a medical student by William Carlos Williams, physician and poet

I am continually humbled and inspired by the stories written and shared in my writing groups, whether for heart or cancer patients.  Their stories live in my mind long after the writing groups have ended.   “Death,” poet Jim Harrison wrote, “steals everything but our stories.” (From: “Larson’s Holstein Bull,” In Search of Small Gods, 2009″.) Stories are our legacies, what we leave behind, the way we are remembered

 It’s why our stories matter.  We are our stories.  They shape us and act as the lens through which we see the world. Through story, we make sense of our lives, reclaim our voices, and learn our stories have the power to touch others’ hearts.  We create community out of shared story.  Whether written or told, our stories are the glue that bind us together, offer hope and healing, and instruct us on what it is to be human.  Is it any wonder why I so love facilitating these expressive writing groups?

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, [you] help heal each other’s spirits.

–Patrice Vecchione, Writing and the Spiritual Life

Writing Prompt: 

What is the story you want to tell?  You can try beginning in the middle, at the end, or simply with that line from our children’s fairy tales, “Once upon a time…” What’s stopping you?

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.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Beginning a Healing Writing Practice:

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

Some Writing Prompts to Help You Begin:

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