January 8, 2019: Flourish: Living a Full Life with Heart Failure

i am running into a new year
and the old years blow back
like a wind …
it will be hard to let go
of what i said to myself
about myself
when i was sixteen and
twenty-six and thirty-six…

(From:  The Collected Poems of Lucille Clifton 1965-2010, Young & Miller, Eds., 2012)

I recalled “I am running into a new year,” the first line and title of Lucille Clifton’s poem,  as 2019 began, although “running” is not an entirely accurate description of how I’ve begun this New Year.  If I take account the reality of aging, of living with heart failure, I have to be honest.   I am actually limping into a new year, thanks to arthritis in my right knee, and, like it or not, a slower pace of life that comes with being a heart failure patient.   Nevertheless, I’ve begun the year with every good intention to make it as happy and healthy as I possibly can.

I greeted January 1st with a practice I’ve had for nearly ten years, considering what I want my life to be about in this New Year and how that is manifested in word, deed and action.  I began several days ahead of first exploring and choosing a single word to frame my intentions and act as a road sign for the year ahead.   With all that has happened in 2018, health-related words were top of mind.

After several hours of deliberation — a necessary process for me to find a guiding word that resonates with what I intend or hope for it in multiple ways–I finally settled on “flourish,” which, according to the dictionary, means, “to thrive, achieve success and prosper.”  Its etymological roots can be traced back to the early Latin word, “flor,” meaning to flower, although the first known use of “flourish” in the English language didn’t appear until the 14th century.  Flourish seemed an apt choice for framing how I want to guide my life and  health in the coming year.  I typed it out and, as I always do, placed it in a small 2-inch frame to sit on my desk as my daily reminder.

Choosing a word was only the first part.  Now I had to consider how “flourish” was going to translate to action, especially since I’m living with heart failure–and at a time when my daily intake of medications continues to increase, and I now record my blood pressure, heart rate and weight on a daily basis, sending it to the cardiac center with the push of a button on my iphone.

I couldn’t help but think of all the cancer patients who’ve written and shared their experiences with me.  Cancer mobilizes them to fight–it’s an invader, errant cells multiplying and growing, and they hope for a cure.  Where the heart is concerned, it is different, and as some authors have described, “the ultimate arbiter of our lives.  When it calls time, the game is overThe heart, “plain and simple, is a pump.”  (From the introduction: The Sublime Engine:  A Biography of the Human Heart, by S. Amidon & T. Amidon, 2012).  The thing is, this pump of mine is weakened and, gradually, wearing down.  It’s not fighting I want to do where the heart’s concerned.  Rather, I feel protective about my ailing heart, a sense of needing to treat it tenderly and gently, hovering over it like a mother at the bedside of her ill child.   I wrote the obvious question across the page of my notebook:  So how do I flourish living with heart failure?

Shakespeare’s “Shall I compare thee to a summer’s day?” came to mind–  an irrational thought, or so it seemed, but as I addressed my heart, I wrote,   “Shall I compare thee to an old car?”  I recalled my high school boyfriend’s old, well used, Ford Model A–a true jalopy.  It couldn’t do much more than get him from home to school, or provide the transportation for a date in our small town, its ancient engine “putt-putt-putting,” as he drove.  There was never any danger of a speeding ticket, although its age often cast doubts in our minds if the old jalopy would make it up a hill.   Yet my friend loved that old car, keeping it clean and shiny with polish, and together with his father, tinkering frequently with the engine to keep it running.

I suppose it’s not unlike the way in which I think about my heart.  Coupled with the care of my cardiologist, the medications I take daily, and my own efforts, I’m intent on keeping my aging engine going for as long as I possibly can.  It’s not perfect by any means.  But I’m intent on flourishing, walking as often as I can around the neighborhood, running errands on foot, carrying my necessary purchases on my back as I walk home.  I never forget about my heart.  How could I when, walking from uphill from our apartment to St. Clair Avenue, I have to pause at a corner, watching the lights turn red, green then red again, to quiet the thudding in my chest.  A momentary fear surfaces:  “Good grief, am I going to pass out here?”  Invariably, I recall the day I actually did pass out ten years ago while walking my dog.  But then the light turns green, and I resume my walk,  reminding myself to keep a slower pace.  I’ve become a “putt-putt” shadow of the long-legged, brisk striding, younger person I once was, when my husband would always complain, “Slow down”– but that was before heart failure and arthritis.  I can’t let the necessity to walk a bit slower keep me from doing something good for the heart.   Walking is one way  I can flourish.

Like it or not, flourishing also requires coming to terms with my aging body.  To wit:  I try to get to the pool a couple of times a week, but I’m no longer an energetic lap-swimmer I once was.  I lack the lung capacity I once had.   Now I carry a bright turquoise “noodle” into the pool to help keep me buoyant as I move back and forth in the water, legs bicycling,  arms doing a modified breast stroke.  I present a comical picture,  but flourishing also involves not taking myself too seriously.  I’m no beach blanket beauty, just an aging woman, less toned than I once was, trying to fend off my embarrassment as I try to exercise.  As the Nike ads once proclaimed, “Just do it.”

I also follow Nike’s dictum every  Friday, when I attend a weekly dance class with other women of indeterminate ages.  We’re  called “The Vintage Dancers.”  I think you get the idea.  Despite my arthritic knee and stiffer joints, I still like to try, because I love to dance.  I don’t have any illusions now:  one glance in the mirror dispels the memory of that former self, sleek in lavender spandex, quick to learn new routines.  Oh, I still wear spandex, common now in athletic garb, but the gracefulness and agility I once prided myself on has all but vanished.  I try to do my best to follow along with the fast pace my instructor establishes, whether it’s salsa, Bollywood, hip hop, or an Israeli folk dance, but I am no longer “fleet of foot or, it appears, able to remember all those new steps as easily as I once could. I end up laughing more often than getting through a complete routine.  Yet now and then, everything clicks, and I do a full routine correctly.  Then without thinking, I’m likely to raise my fist in the air and shout, “Woo Hoo!”  Clumsy or not, I dance because it’s joyous, fun, and above all, I love to laugh.  Movement helps, but laughter, I believe, is a necessary part of flourishing.

As for a heart healthy diet, I’m pretty good about watching salt intake, eating more servings of fish and plenty of fruits and vegetables, but I also enjoy an evening out with my husband, family or good friends.  I put caloric intake aside on those evenings, enjoy a glass of wine with the food and conversation, and the company of people I like.  Friends and family are important to my ability to flourish.  I recall the work of physician Dean Ornish, whose work I followed many years before I ever became a heart failure patient.  Ornish, founder of the Preventive Medicine Research Institute in California and a Clinical Professor of Medicine at University of California, San Francisco,  is best known for  his advocacy of diet and lifestyle changes in treating and preventing heart disease.  But importantly, Ornish  included social support as an important aspect of treating and preventing heart disease.  “The need for connection and community…affect the quality of our lives” he said, “but they also affect our survival to a much larger degree than most people realize” (quoted in Heart: A History, p. 237, by Sandeep Jauhaur, 2018).

As I listed these activities, I realized there are others also important to my ability to flourish,  like engagement in intellectual and social activities I care about:   writing, leading expressive writing groups for cancer patients or offering a patient perspective in heart failure care initiatives.  Flourishing is part of taking advantage of all this city has to offer:  music, art, theatre, walking trails, and the vibrancy of a multi-cultural environment.

After I’d enumerated the activities in my life that are important to for me to flourish in life, I returned to my heart, that “pump” I referred to  at the beginning of this post.  It’s no ordinary pump or engine.  The heart fascinates me.  It is the only organ that represents the qualities that make us most human and has inspired a multitude of  metaphors throughout history.  It is truly an uncommon pump.  It’s not only amazing, it gives us life.  Flourishing then, despite and yet because I live with heart failure, includes so much more than my diet, exercise and medications.  Flourishing is also about love, laughter, friends and the ability to find joy and gratitude in every day I live and breathe.

A Writing Suggestion

.  Have you chosen a guiding word for your life this year?  If so, try to flesh out all the ways in which your word translates into actions and intentions for living as fully and actively as you can.

.  Don’t have a word?  Why not try choosing one that captures what’s important in your life for 2019.

November 26, 2018: Finding Hope in Heart Failure

If a man die, it is because death

has first possessed his imagination. 

 (William Carlos Williams, poet & physician)

I’ve been thinking about hope lately.  It dominates the conversation my husband and I have been having since his cancer diagnosis and surgery, intensified now by the possibility of his participation in a clinical trial of a new immunotherapy combination.  We weigh the statistics for a possible recurrence against the possibility of his living longer, perhaps cancer free and then we’re sobered by the list of potential side effects of the treatment, some that are serious and possibly permanent.  Still we hope, just the cancer patients who join my writing groups do.  The hope for a cure to cancer is never far from their minds, to hear the words, “cancer free” or at the very least, be granted a period of remission.

Yet the hope they have during their cancer treatments is in sharp contrast to being diagnosed with heart failure, a condition which has no cure and brings with it the expectation of worsening heart function over time.  I’ve thought about how, as a heart failure patient, my hope is modest by comparison.  It is buoyed by things like a change in medication that might lessen the strain on my weakened heart or the continuing vigilance of my ICD to manage any episodes of atrial fibrillation or ventricular tachycardia.  But the knowledge of heart failure’s trajectory, a slow downward progression, is never far from my consciousness, and for now, at least, there is no possibility of a cure on the horizon.

Despite advances achieved in medical management, HF continues to present challenges in hospitalization, morbidity and mortality rates. Varying with the severity of the disease and the underlying etiology of HF, the illness trajectory can be a rapid downward spiral with no hope of cure.  (Rustoen T, et al., “Hope in patients hospitalized with heart failure.” Amer J Crit Care. 2005;14(4):417–425)

As early as 1986, a study conducted in a Canadian heart failure clinic examined hope among heart failure patients, noting that while “substantive articles were found in the nursing literature examining the concept of hope with terminal and critical illness, cancer, HIV/AIDS, spinal cord injuries, and the homeless…, there is a paucity of data about the construct of hope in people with HF over the past two decades.”   The study was the first to examine hope in adults with HF, and the researchers found that adults who maintained “life involvement” despite the increasing physical limitations experienced as heart failure patients, were also the most hopeful.  (Rideoout E, et al.,  “Hope, morale and adaptation in patients with chronic heart failure.” J Adv Nurs. 1986;11(4):429–38)

Their findings were echoed  in a 2005 study of hope among hospitalized heart failure patients as the researchers concluded that “Adaptation to a life-threatening illness may induce a “response shift” that causes such patients to have more hope than the general population… How the patients judged their health and expressed satisfaction with their lives influenced their hope.  (American Journal of Critical Care. 2005;14:417-425)

Hope is something we all need at different and difficult times in our lives.  It plays a major role in our emotional and physical healing, whether from tragedy, loss or serious illness.  Siddhartha Mukherjee, physician and author of the Pulitzer Prize winning The Emperor of All Maladies:  A Biography of Cancer (2011) defined hope as a “vital organ.” It gives cancer patients added life force, and in the world of serious illness,  loss or suffering, hope may be one of the most powerful medicines we possess.

Despite the severity of heart failure and its growing incidence around the world, we are not without hope. There are numerous strategies to help people with heart failure live well, live longer and, in the future, even have success preventing heart failure in the first place, or preventing its progression and complications.  Indeed, with advances in regenerative medicine, there may even come a day when damaged and dysfunctional hearts can be rejuvenated and restored.  —Ted Rogers Centre for Heart Research

What is hope?  It’s an expectation that something good can happen in the future—and in the midst of suffering or sorrow, we sometimes forget that hope can be present in many different aspects of  our lives.  Anne LaMott’s 2013 book, Stitches: A Handbook on Meaning, Hope, and Repair, illustrates how hope exists–even in a world punctuated by vitriolic political discourse, frequent reports of random shootings, car bombs, wars, natural disasters, hunger or life-threatening disease. ” Hope is a conversation,” LaMott states.  “What allows us to go on and find those small moments of goodness, are to be found in “attention, creation, love, and,” she adds with incomparable wit, “dessert.”

With hope, there is healing, something that is often simplified in the way we think of it.  It’s more than medicine and treatments.  Healing, in the truest sense of the word, is the process of “becoming whole,” whether from a natural disaster or a serious, even life threatening illness.  It is a multi-faceted process of transformation.  There is a strong connection of mind and body in healing, and hope plays a central role.  In the studies that have explored the impact of hope, researchers conclude that hope helps decrease patient anxiety and increases quality of life. Even among the terminally ill, hope is an essential resource.  It helps us cope during times of intense physical and psychological distress.

“The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.” 
― Barbara Kingsolver, Animal Dreams 1990

What gives me hope?  Living as fully and as presently as I can.  It’s in those times I stop and remember the “small moments of goodness” in my life, things that raise my sagging spirits after another round of tests in the cardiac clinic or in the discussions of next steps in my husband’s cancer treatment.  Hope sometimes seems elusive until I experience the little “desserts” in my life that LaMott describes: a hug from a grandchild, dancing (badly) and laughing each week with “The Vintage Dancers,” singing together with a random crowd of people at an evening of “Choir! Choir! Choir!” or walking with my dog through the park and watching her unflagging hope of catching a squirrel (she never does, but her hope is never diminished).  In those moments, my own hope expands, and I’m reminded of the resilience of the human spirit, even my own.  Perhaps that’s why we often say that “hope springs eternal.”

 

HOPE

Hope

is the belief

that one hand

reaching to another

can eventually

touch the moon,

allowing the light

to guide us

through the night.

(By Nicolas Mazza, Editor, Journal of Poetry Therapy)

 

Writing Suggestions:

  • Explore what  hope is in your experience of  living with heart failure:
    • Where do you find hope?
    • What gives you hope?
    • What weakens it?
    • What do you hope for?

November 4, 2018: Medicine & Metaphors: Communicating Illness

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.–Susan Sontag, Illness as Metaphor, 1978

Poetry and medicine share a long history, dating back to the Greek god Apollo, who was responsible for healing and poetry.  Today, The use of metaphor, a poetic tool and figure of speech that compares things seemingly unrelated is also common in illness and everyday life.  Think of how we use sports metaphors almost unconsciously to describe daily life.  In the workplace, you strive to be a “team player” or be encouraged to “run with a good idea.”  In a budding romance, a boy might “make a pass at someone,” or in an emotional argument between two people, one is the other he is “way out of bounds.”

There’s little doubt that metaphors are visual and illustrative, but they can also run the risk of creating stereotypes and confusion, even becoming clichés.  Some, like the sports and military metaphors so common in everyday language are frequently used to describe one’s medical experience.  Jack Coulehan, MD and Poet,  in a  2003 article, discussed some of the most prevalent metaphors used in medicine, among them, parental metaphors (“She’s too sick to know the truth”), engineering metaphors, (He’s in for a tune-up”), and the military metaphor,(“the war on cancer”).

In “The Trouble with Medicines’ Metaphors,” appearing in a 2014 issue of The Atlantic, author Dhruv Khullar, MD, wrote:

The words we choose to describe illness are powerful. They carry weight and valence, creating the milieu in which goals of care are discussed and treatment plans designed. In medicine, the use of metaphor is pervasive. Antibiotics clog up bacterial machinery by disrupting the supply chain. Diabetes coats red blood cells with sugar until they’re little glazed donuts. Life with chronic disease is a marathon, not a sprint, with bumps on the road and frequent detours...  Military metaphors are among the oldest in medicine and they remain among the most common. Long before Louis Pasteur deployed imagery of invaders to explain germ theory in the 1860s, John Donne ruminated on the “miserable condition of man,” describing illness as a “siege…a rebellious heat, [that] will blow up the heart, like a Myne” and a “Canon [that] batters all, overthrowes all, demolishes all…destroyes us in an instant.”

As Khullar points out, “…we’ve internalized these metaphors, so much so that we often may not recognize how they influence us.”  And while Susan Sontag famously argued in her book, Illness as Metaphor (1978) ” that illness is not a metaphor, and [that] being ill—is one most purified of, most resistant to, metaphoric thinking,” the fact is that metaphors can and do help us understand one another’s experience.  They are visual, visceral and provide a shorthand route to our emotions.  They offer a way to make sense of the emotional chaos that often accompanies a diagnosis of serious illness or physical condition.  Metaphors help to communicate our feelings and experience to others, and in turn, doctors use metaphors to help patients understand the ramifications of their illness. A 2010 study published in the Journal of Palliative Medicine, found that “Physicians who used more metaphors were seen as better communicators. Patients reported less trouble understanding them, and felt as though their doctor made sure they understood their conditions.”

Metaphors get our attention.  They give us a vivid way to communicate and understand the experience of illness.  For example, consider the poem, “The Ship Pounding,” by former U.S. poet laureate, Donald Hall.  The reader is offered a glimpse into his feelings and experience of having his wife, poet Jane Kenyon, frequently hospitalized in the final months of her struggle with leukemia.   He uses a powerful visual image of a ship filled with ill passengers, heaving in rough waters, which helps the reader see and understand his experience.

The passengers on this voyage
wore masks or cannulae
or dangled devices that dripped
chemicals into their wrists,
bur I believed that the ship
traveled to a harbor of breakfast,
work, and love.
I wrote: “When the infusions
are infused entirely, bone
marrow restored and lymphoblasts
remitted, I will take my wife,
as bald as Michael Jordan,
home to our dog and day.”
Months later these words turn up
among papers on my desk at home,
as I listen to hear Jane call
for help, or speak in delirium,
waiting to make the agitated
drive to Emergency again,
for re-admission to the huge
vessel that heaves water month
after month, without leaving
port, without moving a knot,
without arrival or destination,
its great engines pounding.

(From:  Without, 1998)

Anatole Broyard, whose book, Intoxicated by My Illness and Other Writings on Life and Death (1993),  conveyed his experience of terminal prostate cancer, he wrote:

Always in emergencies we invent narratives. . . Metaphor was one of my symptoms.  I saw my illness as a visit to a disturbed country. . . I imagined it as a love affair with a demented woman who demanded things I had never done before. . .   When the cancer threatened my sexuality, my mind became immediately erect.

Arthur Frank, Canadian sociologist and author of At the Will of the Body:  Reflections on Illness (1991), his memoir of his illnesses of heart attack and  cancer, described his illness and recovery as a “marathon.”  Frank was a runner, and the physical and mental demands of the marathon were apt comparisons to describe his experiences of illness.

Kat Duff, author of The Alchemy of Illness, (1993), was diagnosed with chronic fatigue and immune system dysfunction syndrome.  She explored illness narratives as a way to understand the broader nature of her illness, comparing it to a landscape–a wilderness, or coral reef–describing her process of regaining health as an adventurous voyage through it.

Yet as I’ve also discovered in my ongoing search for the use of poetry and metaphor in heart failure and disease, there is yet, according a 2018 article “Making the Invisible Visible,”  by Biglino, Layton and Associates,    “a limited use of metaphors [in heart disease and transplantation] compared with other conditions such as cancer or HIV/AIDS…but generally illnesses are not metaphor free, despite technological advances.  Biomedical narrative is limited in its power to convey full meanings of illness experiences and treatments, hence the need to express nuances of illness experiences through metaphors.”

Metaphors–so common in poetry and the arts–are invaluable in helping us to communicate and understand the experience of illness.  They allow doctors to develop a common language with patients, and they give those of us living with serious or chronic heart conditions a way to express what we feel and experience.  As Anatole Broyard, commenting on his own illness experience, said:  “Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers.”

Are you aware of the metaphors you use naturally to describe what it’s like to live with heart failure or another serious heart condition?  Here are some suggestions to get you writing about them:

Writing Suggestions

  • Think of how you describe your condition to others. Are you aware of the metaphors that naturally come to mind?  Explore these.  What images do they convey?  How do they help you communicate your condition to others in your life?
  • Stuck? Begin with a phrase such as “Heart Failure is like a…” and finish the thought, noting what image or word emerges.  Try listing several.  Then, take the one that is most compelling for you and explore it further in writing.  Remember, write quickly, without editing.  Set the timer for five or ten minutes and keep your pen (or fingers) moving.
  • Once you’ve finished, read over what you’ve written.   Are there any surprises?  Did you discover any unexpected metaphors?  How have your metaphors helped you to explain your experience of illness to others? Describe one or two instances.
  • Does your physician or cardiologist use metaphors to help you or other patients understand the full extent and prognosis of heart disease and failure? What kinds do you hear most often?
  • You may want to go deeper in your writing.  Our metaphors can inspire a poem, such as Donald Hall’s, or a story that describes and communicates your illness experience.  Let your metaphors be the inspiration for a poem or story.

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…