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.

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