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…


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

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