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

Storytelling has been an integral to being human for thousands of years.  Our stories have given us a way to engage, to share our experiences and find, in one another’s stories, themes and experiences we share.  Storytelling began, in part, as an oral way of helping people make sense of their worlds.  They were the mechanism by which traditions and wisdom 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.”

Tell me a story.

In this century, and moment, of mania,

Tell me a story.

(Robert Penn Warren, Tell Me a Story,” in New and Selected Poems 1923-1985)

Whether oral or written, what is it about sharing our stories that makes them so important?  Storytelling, as several researchers suggest, is a powerful tool for patients and healthcare providers alike.  It provides the patient a way to give voice to the experience of illness and, in turn, to begin to confront their illness, questions of care and mortality.  There’s plenty of evidence from the significant body of work on writing and healing by James Pennebaker, PhD, showing that creating a story about one’s experiences in life can result in improved physical and mental health in many populations, whether written and verbal.   For example, A 2011 study cited in the Annals of Internal Medicine showed that a storytelling intervention produced substantial and significant improvements in blood pressure for patients with baseline uncontrolled hypertension as effectively as taking additional medications.   Moreover, research now suggests, the skills of storytelling,  can result in improved health communication between doctor and patient.

“Telling and listening to stories is the way we make sense of our lives,” according to Dr. Thomas Houston, lead author of the hypertension study.  “That natural tendency may have the potential to alter behavior and improve health.”  Interviewed after the study in a 2011 New York Times article, he said, “Storytelling is human.  “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.”

 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

Patient stories have begun to be recognized as an important aspect of the medical experience, thanks to the work of Rita Charon, M.D.  She created the term, “narrative medicine,” a medical practice using patient stories in clinical practice, research, and education as a way to promote healing.  The growth of expressive writing research ignited by James Pennebaker’s research also fueled the recognition that stories, written and shared, help us heal.

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…. stories keep us connected to each other; they reassure us that we are not alone.–Miriam Divinsky, MD, Canadian Family Physician, 2007.

In the shock of a cancer diagnosis or the weeks of surgeries and treatments that follow, you may feel lost, even lonely.  You may feel as if you’ve even been robbed of your voice, that you have nothing to say.  But try to write.  It doesn’t matter, at first, if you do little more than rant, pouring out your emotions on the blank page, but gradually, you’ll find a story begins to emerge, and you begin writing more and more.  Writing helps you heal, and it helps you rediscover your life, one that is larger than cancer.

In my writing groups, it’s the stories of the cancer experience that first get written.  Yet, while cancer may be the starting point, as our weeks together continue, other stories emerge, ones about a person’s whole life–stories of  love, loss, family, childhood, the joys and sorrows that make each person uniquely human.  Writing  stories from other chapters of your life offers a way to understand and make sense of the whole life you’ve led, not just the chapter called “cancer.” Sharing them affirms your life, your legacy.  They say:  “This is my life.  This was what I experienced.  This is important to me.  It is why I’ve become the person I am.”

I never tire of the stories written and shared in my writing groups.  Everyone’s way of telling their stories are unique, and despite the common themes of a cancer diagnosis, those stories continue to humble and inspire me, even after nearly twenty years of leading expressive writing programs.   I remember them long after the workshops end, even after some lives are sometimes lost to cancer.  As I recall their stories, I see their faces.  I remember their lives.  “Death,” writer Jim Harrison wrote, “steals everything but our stories.” — (From:  Larson’s Holstein Bull, in From: “Larson’s Holstein Bull,” In Search of Small Gods, 2009)

It’s why your 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 even learn our stories have the power to touch others’ hearts.  We create community out of shared story.  Cancer may bring people together to my writing group,  but it’s in the stories written and shared that we discover the glue that binds us together.

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

Whether big or small, extraordinary or ordinary, of illness or of health, laughter or sorrow, your stories matter.  Write them.

Writing Suggestions:

  • Begin with something simple, like “the moment I first heard the words, “you have cancer,” I…  Try remembering as much detail as you can from that moment:  the quality of light, where you were sitting or standing, the doctor’s voice, what you felt or said…
  • Try beginning with the first line of someone else’s poem, such as “As if your cancer weren’t enough…” (from “Guinea Pig, by Julie Cadwallader-Staub, Cancer Poetry Project, V. 1, 2001) or “The day I finished chemotherapy…”  (from “Reminiscence” by Ruth M. James, Cancer Poetry Project, V. 1, 2001) or “No.  I don’t want to hear about your uncle…”  (from “The Cancer Patient Talks Back,” by Molly Redmond, Cancer Poetry Project, V. 1, 2001)
  • Make a list of firsts:  the first kiss, first haircut, first grade, first friend, first dentist appointment, first time you walked home alone from school…    Write the story of a first.
  • Write one of your favorite family stories.
  • Write about a teacher, doctor or coach who first inspired you to do more than you thought you could.
  • Write about something that made you angry, sad, frustrated, or giggle…
  • Write about losing hair during chemotherapy or nausea or the infusion room.  Perhaps there’s a poem lurking there.
  • Write about something that always makes you laugh when you remember it.
  • Write about what it’s like to write.

The point is, the smallest thing can bloom into a story, take you to memories and events in your life that matter to you. Start there.  Set the timer for 15 minutes.  Write nonstop until it rings.  Then read what you’ve written.  Chances are, there’s more to write.  Try the same exercise the next day or later in the week.  Keep writing.  Your life, your stories matter.

 … in order to make you understand, to give you my life, I must tell you a story—and there are so many, and so many—stories of childhood, stories of school, love, marriage, and death…–Virginia Woolf

In one way or another, cancer impacts virtually all of our lives. On an individual level, it is a life-transforming experience that often challenges the mind, heart, and spirit of patients and family members as deeply—if not more deeply—than it challenges the physical body—Jeremy Geffen, MD, The Journey Through Cancer: Healing and Transforming the Whole Person, 2006

Cancer, or any other life threatening illness or trauma, changes you.  Not only is your life altered in different ways, even if you are pronounced “cured” or “healed,” you quickly discover that returning to the self, to the life you knew before cancer or trauma occurred, is virtually impossible.  Not only has your body been altered by treatment and surgeries, the way you think about yourself and your life has changed, whether you see yourself as “living with” cancer, “a survivor,” “in remission,” “a warrior”–as well as  how you experience people and situations that were part of your daily life before cancer.

You’ve suddenly been thrust into the necessity of revising the life you have known, the one you’ve been living.  Revision is not just reserved for writers in the process of creating a story or poem.  It’s a necessity for life.  Yet when you are challenged to change the way you live, it can be confusing and difficult to understand, let alone learning to accept some of the necessary changes in your life.  You’re thrust into a journey you wouldn’t have chosen to travel, but, as Mary Oliver describes in her poem, “The Journey,”

You knew what you had to do…

and the road full of fallen

branches and stones.

But little by little…

the stars began to burn

through the sheets of clouds,

and there was a new voice

which you slowly

recognized as your own

that kept you company

as you strode deeper and

deeper

into the world…

You knew what you had to do…

(In:   Dreamwork, 1994)

In an interview by William Young, appearing in a 1993 issue of The Paris Review, William Stafford was asked to comment on his choice of a title of one of his books about writing: You Must Revise Your Life.  “I wanted to use the word revise because so many books about writing make it sound as though you create a good poem by tinkering with the poem you’re working on. I think you create a good poem by revising your life… by living the kind of life that enables good poems to come about.”

Several years ago, after the death of my first husband and the years spent being a single mother, I felt I was ready to unearth the story of that particularly painful and traumatic chapter of my life.  I began by starting a memoir, one I ultimately decided to turn into a novel.  I sent the manuscript to a few respected writers for review, and as it needed, revised multiple times.  Yet it took several months of rewriting and revision to acknowledge that I was still skating on the surface of the story, overly concerned with descriptive details, grammatical nits, and developing a rounded protagonist, who was, in real life, me.  (I never succeeded with her–my protagonist was just too “good.”)  The writing dragged on, through four complete revisions—or rather, revisions I thought were complete.  Yet something wasn’t working. The story was no longer my story, nor was it the real story “It’s become a fairy tale,” I complained to my writing buddies, and I put the novel aside in frustration.  I’d lost sight of my story, and in the process, had not written myself “into knowing,” as author Patricia Hampl once said about the writing process.  I was farther away from the truth, the real meaning in my story than ever.  I put the manuscript aside and faced the fact that the real revision was one of coming to terms with my life–before and after the trauma:  what, in me, had changed and how had it changed how I now approached the life I had now.  I had to do a complete re-visioning of my story.

I’ve been working on my rewrite, that’s right
I’m gonna change the ending
Gonna throw away my title
And toss it in the trash
Every minute after midnight
All the time I’m spending
It’s just for working on my rewrite…

(“Rewrite,” by Paul Simon, from the album, So Beautiful or So What?” 2011)

I discovered that there was much more to the process of writerly revision as Simon’s lyrics suggest, getting beyond the “happy” ending and digging deep for the meaning of those events in my life.  Simon hints at that in his song, and it’s likely one of the reasons his “Rewrite” lyrics were published in a recent edition of The New Yorker under the heading, “Poetry.”  Listen carefully, and you realize the real story is of a Vietnam vet who’s had hard times, and his rewrite is an attempt to create a happy ending for himself.

I’ll eliminate the pages
Where the father has a breakdown
And he has to leave the family
But he really meant no harm
Gonna’ substitute a car chase
And a race across the rooftops
When the father saves the children
And he holds them in his arms…

We all fantasize about how our lives might have been different, “if only if I’d done ___ instead of …,” but that’s the stuff of dreams and wishes, of fiction instead of reality.  Happy endings aren’t like the ones we remember from childhood fairy tales.  Life–cancer, loss, trauma, hardship–these events challenge us to revise our lives, to learn to honor our uniqueness, even our struggles and losses, and learn from them.  Only then can we truly begin a new script for the life we have ahead of us.

At a breast cancer rally she rises

Above sixteen positive lymph nodes

To tell the world that cancer is a wakeup call

That resonates to the cell level…

Cancer is not a gift but a lesson

Full of seeing now and living presently.

(“The Lesson, by Judy Rohm, in The Cancer Poetry Project, V.1, 2001)

      …”cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.”  — Alice Hoffman, NYTimes, August 2000.

Cancer, any serious illness or trauma can teach us to revise our lives in a way that we are more “alive” to the world, to paying attention to what’s in front of us, discovering gratitude in slowing down and being fully present to our daily lives.  Yes, we have changed, but we still have the opportunity to be considered in our choices, to make certain that however long our lives may be, we learn to live fully and with gratitude for each day we’re given.

As I write this post, I recall the first weeks several years ago, after I’d finished my doctoral research (a study of instructor thinking during instruction in a professional school of landscape architecture).  One of my “subjects,” a particularly gifted instructor wrote a short account of his experience in the study.  Entitled “The White Rat Talks Back,” he began his narrative with an old Fleishmann’s margarine advertisement, “I’m just a guy … who had a heart attack.  I’m okay now, but I learned a lot.”

“I’m okay now, but I learned a lot.”  Well, as Frank Sinatra once sang, “that’s life (that’s life)…  We all have chapters–those difficult experiences–that challenge us.  Some we remember fondly; others are the ones we don’t wish to repeat, but like it or not, we have to face the fact that our lives have been altered in profound ways,  even in ways we never imagined nor wanted, and we are left to re-consider and revise the ways we live from here on out.   How have you challenged to revise your life, your way of seeing the world, by cancer, by any life hardship?

 

Writing Suggestions:

  • Imagine you had the power to rewrite your life, as the subject in Paul Simon’s song, “Rewrite” dreams of doing. What would be your “happy” ending?
  • What have you learned from the painful chapters of your life?
  • As you look back on the difficult times in your life, before cancer and after, how have you revised your life?  What changed?  What didn’t?

 

 

 

 

 

 

 

With only the pages of People

and Time for amusement, who would not

feel afraid?

(From:  “In the Waiting Room,” by David Bergman,  Poetry, December 1986)

We are all forced to wait more than a few times in our lives. Those toe-tapping, check-our-wrist watches moments are minor irritations that we all endure.  We wait in lines for tickets or to get through security at the airport.  We wait to be served in restaurants or for a train in the subway station.  We wait for calls or letters from employers, editors or loved ones, for acceptances to schools, or the results of medical tests.  And we wait in hospital or physician’s waiting rooms for the appointment scheduled well over an hour earlier, thumbing impatiently through outdated magazines and checking the clock a dozen times, unable to concentrate on much of anything but the waiting.

Three of my mornings last week were spent in hospital waiting rooms.  I sat with other patients and waited for my name to be called for tests, blood work, and physician consultations.  Thankfully, most of my appointments were completed without too many delays, but occasionally, as I experienced earlier this summer, the time spent in a waiting room can be extreme, testing my patience, ability to “hear” what a physician says by the time he finally walks into the examination room, or undermining the sense of confidence I might have felt about his medical advice and conclusions. In that instance, the impact of an extremely long period of waiting was so extreme I requested a second opinion, which occurred last week.  Thankfully, this physician was on time, listened patiently and took the time for a thorough assessment.  I was armed for a wait, however, arriving with a novel to read and a notebook to write in.

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. She offers examples of the common reasons that lead to patients’ waiting.

.  Getting a call from a specialist that a patient has been admitted to hospital.

.  Urgent walk-in patients arriving who need to be seen quickly

.  A patient arriving late for her appointment

.  A patient with a condition requiring additional time

.  And in some cases, double or triple booking in an attempt to accommodate all patients needing to be seen.

Yet, no matter the reasons, there is a kind of waiting no one finds easy, the kind of waiting punctuated with worry and sleepless nights, waiting that may become a matter of life and death. Anyone diagnosed and living with cancer knows this kind of waiting intimately.  In the course of treatments and recovery, waiting can be torment, as writer Susan Gubar describes in “Living With Cancer: Hurry Up and Wait.”

As a cancer patient, you endure “waiting for a doctor, waiting for radiation, waiting for the delivery of chemotherapy drugs, waiting through interminable infusions or transfusions, waiting for a scan or a biopsy, waiting for the results of a scan or a biopsy, waiting (sometimes starved and unclothed on a gurney in a hall) for surgery… Hurrying up to wait is, of course, the fate of most patients, whether or not they have cancer and no matter how impatient they may be. But for cancer patients, waiting entails being enveloped in heightened fears about harmful protocols and the difficulty of eradicating or containing the disease. While I’m waiting, who knows what appalling cells are conspiring within my body to destroy my being? (In:  “Well,”  New York Times, December 3, 2015)

A 2011 research study reported in The Annals of Surgery found “wait times for cancer treatment have increased over the last decade… potentially resulting in additional treatment delay…Although cancer incidence rates have seen modest declines during the last decade, the overall number of patients diagnosed with a solid organ malignancy has been increasing, likely due to an increasing elderly population.” What’s more, waiting can have more negative impact that simple frustration.  An extended interval from diagnosis to treatment, the researchers concluded, adds to patient anxiety, leads to gaps in care, and perhaps affects disease progression.

Participants in my expressive writing groups often express frustration in the amount of waiting involved to be tested and then receive the results of those tests.  If you’ve been faced with the anxious period between any test for cancer and its results, Muriel Fish’s poem, “In Cold Dreams Before Dawn,” captures the  how waiting can escalate fear and worry:

…The radiologist

Enters, snaps the x-ray film into a wall unit lit with

brisk efficiency…

…the bite of the biopsy needle reminds me

most lumps are benign…

…I wait, remembering long

Bittersweet days sitting with my mother and sister,

each with their own small malignancy and dead within three years.

(In:  The Cancer Poetry Project, V. 1, 2001)

Robert Carroll, MD,  a UCLA psychiatrist, utilizes poetry to help patients cope with illness and struggle.  In a 2005 paper, “Finding the Words to Say It:  The Healing Power of Poetry,” he explored how poetry can help us find the words to express trauma, illness, death and dying.  “What Waiting Is,” one of the featured poems, captures, for me, the emotions that often accompany the waiting room experience of parents, spouses, and family members.

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…

In matters of death and dying, we may be forced to do little but wait while our emotions run rampant.  Finding ways to express pain and emotion by writing or discovering meaning in others’ poetry and prose can have therapeutic benefits.  Certainly, it has for me.  Poetry has helped me put words around tumultuous emotions more than once, but this poem, “What Waiting Is,” captures the emotions I felt in the hours preceding the death of my parents, one from lung cancer and the other from Alzheimer’s.

In the bathroom you look in the mirror.
What do you see?
Your father’s sad face?
Your mother’s eyes?
You catch the water cupped
in your thickened hands, splash it on your face,
and hope against hope you can wash it away—
the aging brown spots, the bags,
the swelling truth of waiting—…

you get home to see the light
flash on your answering machine…

you push the button,
and it’s your sister’s voice,
but it’s choked,
and she can’t speak.

 Waiting never seems to get easier, although you may, as I have, become more “seasoned” at doing it as your time in waiting rooms increases.  But there are inevitable times, particularly in the midst of any serious illness, trauma or suffering, that the waiting we must do seems endless.  Perhaps learning to wait, like it or not, is a life lesson we are forced to endure–and to master.

I recall the words of T. S. Eliot in The Four Quartets, “I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing; wait without love, for love would be love of the wrong thing; there is yet faith, but the faith and the love are all in the waiting…”  (East Coker, The Four Quartets, 1940)

The faith and the love and the hope are … in the waiting.  These words make me reconsider why life makes us wait.  I am still learning, even after all these years, to accept what I cannot control, to let things unfold as they will.  “This is life.  You learn to wait.”

Writing Suggestions:

Like you, I’ve sat in many waiting rooms, worried and anxious, as a child or spouse underwent surgery, or waited for the call I dreaded but knew would come as my parents were dying, and waited for the results of echocardiograms or a biopsy.

  • What has been your experience of waiting?
  • Think about all the times you’ve waited for something or someone, whether in a medical waiting room or at another time in life, whether worrisome, painful or even humorous (once, of course,  the waiting ended!)
  • Write about what it’s like to be caught in the “helplessness” of waiting.

 

 

August 6th, and I remember that on this day, my father was born 100 years ago.  I also remember how his death from lung cancer twenty-five years ago left his family torn apart with sorrow and grief, some of the wounds never fully healed.  Remembering how deeply we felt the loss of our father got me to thinking about the impact of losing a loved one.   I recalled when, on a summer’s evening some time ago, my husband and I ran into a friend at a jazz concert.  Divorced in his 50’s, he longed to find a partner to share the rest of his life and had begun dating in earnest again after a long hiatus.  He introduced us to his evening’s date, an engaging woman we chatted briefly, learning that she had lost her husband a year or so earlier.

After his companion left to find the restroom, our friend turned to me and sighed, “Another widow.”  He shrugged his shoulders and added,  “I don’t if I’m ready for this,”  “this” meaning the emotional roller coaster that often accompanies new romances or relationships after a spouse’s death.

“Be patient,” I said, “it takes so much longer than you think it will to recover from a husband’s death.”  I was remembering how, in the year after the sudden death of my first husband, I had begun dating again several months later , hoping it might ease the constant heartache I felt.  It didn’t work.  I made poor choices in the process before I acknowledged I was simply not ready to begin any new relationship.  Healing had its own time schedule, and it couldn’t be rushed. Eight years later, I met and later married my current husband, but even in our early years together, I experienced an exaggerated fear of loss.

Whether the loss of a spouse, a child or a friend from serious illnesses like cancer, ALS, heart attack, or other unexpected tragedies, much is written about dealing with the loss of a loved one yet it’s not something  well understood by those who haven’t experienced it.  Some may think of grief as a single instance or short time of pain or sadness in response to loss, but the American Cancer Society reminds us that the real process of grieving lasts much longer.

When we are in grief and mourning, it can be hard on friends or acquaintances, even our family members.  Our North American society isn’t as adept at allowing grief to take a normal course as some other cultures do.  It’s painful to see someone we care about dealing with the heartache and sorrow accompanying the death of another, but it’s very important the bereaved feel supported through the process and are allowed to express their grief.  It’s why we have bereavement support groups, therapists and pastors who specialize in grief counseling.  Grief, although similar to us all in a general way, is experienced differently by everyone.  It’s  important to accept and honor the way in which a bereaved person chooses to express sorrow and grief.

This morning, my husband and I talked about the process of grieving when a loved one’s life ends, recalling the agonizing four year battle with bladder cancer my husband’s brother in-law endured before he finally died.  I remember telephoning my sister-in-law the day after his death, rehearsing ahead what I could say that didn’t sound trite.  The telephone rang once, twice and two more times before she answered it.

“Hello?” I knew immediately she had been crying.

“I’m sorry,” she said.  “I just went into his room and saw how empty it is, and then…”  She began sobbing again. “He’s gone, Sharon.” Her voice was heavy with grief and exhaustion.  “He’s been my life for sixty-four years.”

I could only murmur, “Yes, I know…” and think about what it meant to be together for so long.

It is hard to give up after months of making lists,

phoning doctors, fighting entropy.  But when the end comes,

a bending takes over, empties the blood of opposition

and with a gentle skill, injects a blessed numbness…

According to the American Cancer Society,” studies have identified emotional states that people may go through during grief. The first feelings usually include shock or numbness. Then, as the person sees how his or her life is affected by the loss, emotions start to surface. The early sense of disbelief is often replaced by emotional upheaval, which can involve anger, loneliness, uncertainty, or denial. These feelings can come and go over a long period of time. The final phase of grief is the one in which people find ways to come to terms with and accept the loss.”

Perhaps this surrender foreshadows my own old age

when I have raged to exhaustion and finally have to go.  For now,

the numbness wears off.  I drive to the market, cook my own food,

take scant note of desire

with no one to consider or contradict my choices.

Something in me will never recover.  Something in me will go on.

(From “Numb,” by Florence Weinberger, in The Cancer Poetry Project, 2001)

After sixty-four years together with her husband, my sister-in-law died barely a year later from a recurrence of inflammatory breast cancer after a five year remission.  Life without her husband, despite having her adult children and grandchildren nearby, was hard for her without her husband, who had been the primary decision maker in all their years of married life.   She seemed to grow increasingly tired and depressed, as if her will to live was fading.  As many psychologists and psychiatrists know, there are few things in life more likely to lead to depression depression than losing a spouse, especially for seniors.

More than a few research studies have demonstrated that spousal bereavement is a major source of life stress and not infrequently, leaves people vulnerable to other problems like depression, chronic stress, and reduced life expectancy.   Studies conducted around the world that shown that the rate in mortality often goes up among grieving spouses after their loved one dies. One such study conducted in Israel found the risk of death during the first six months after losing a spouse increased by 50%. The phenomenon is common enough that it even has a scientific name:”Broken Heart Syndrome,” which is defined as an impermanent heart condition caused by stressful situations, like the death of a loved one.

All lives are accompanied, at some point, by mortality, but some losses are far more difficult to accept than others.  Death from a protracted illness, at least, has a cause that we understand and allows the patient and the loved ones time to come to terms with the inevitability of death.  But the unexpected losses, like the sudden death of a spouse or child, comes as a complete shock, defies our sense of what is “supposed” to happen in life, and can complicate and extend the grieving process for years.

Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends.

(Joan Didion, The Year of Magical Thinking)

My own emotional state in the aftermath of my first husband’s drowning involved a complicated grieving process that took years to fully heal.  But I also remember how his parents, now deceased, and two siblings never fully recovered from losing a son, an older brother.  Nor did my daughters, then nine and ten, ever fully recover from their father’s death.  Even now, over 30 years later, remnants of grief and loss still surface from time to time.

In the turbulent days following my first husband’s death, a friend offered  me the poem, “And Death Shall Have No Dominon,” by the Welsh poet, Dylan Thomas,  to use in honoring my husband’s death with his family and closest friends.  Thomas’s poem celebrates the undying and everlasting strength of the human spirit, and reading and sharing it provided some solace in the face of tragedy, reminding me that even in death, our loved ones are not completely lost to us.  We carry them in our hearts, our memories and our stories.

And death shall have no dominion.

       Dead men naked they shall be one

       With the man in the wind and the west moon;

       When their bones are picked clean and the clean bones gone,

       They shall have stars at elbow and foot;

       Though they go mad they shall be sane,

       Though they sink through the sea they shall rise again;

       Though lovers be lost love shall not;

       And death shall have no dominion.

(From:  Twenty-Five Poems, 1936)

Writing Suggestions

This week, consider the process of grief and mourning:

  • Have you lost a loved one to cancer or an unexpected tragedy? Write the memory of the day someone you loved died.
  • What did you experience in the aftermath  of death? Write about the emotional ups and downs of grief.
  • What helped you deal with the loss and gave you the strength to go on? Write about the gradual process of healing from the death of a loved one.
  • Are you currently faced with a terminal diagnosis or is your loved one? Describe the process of grief and what, as you face a shortened life or potential loss of your loved one, gives you solace and the strength.
  • Write a favorite remembrance of a loved one who has passed on. What brings a smile to your face when you remember the person?  What qualities or traits do you remember most fondly?

Earlier this morning I participated in a conference call with a group of medical professionals in the Canadian Heart Failure community, a group tasked with creating a joint paper on Heart Failure care guidelines in Canada.  I was invited to represent a patient perspective, but admittedly, I was taking copious notes in a conversation that, like most specialties, has its own lingo–acronyms and terms unique to the field but for me, akin to a foreign language.  At the conclusion of the call, the group was divided into sub-groups, each tasked with writing and submitting questions to be included in a national survey on heart failure treatment, care and transitions.   I was assigned to explore and formulate questions dealing with transitions for heart failure patients.

Ironically, just last week, I’d been part of a survivors’ retreat, “Transitions,” at Gilda’s Club here in Toronto, where I led a writing  workshop on the process of transitioning from patient to “survivor.”  After this morning’s call ended today, however,  I wondered how “transition,” in heart failure terms, differed from the way in which it was used in our workshop last week.

At the retreat, we used it synonymously with becoming a cancer survivor–someone who has been, if not cured, given a number of years of being “in remission.”  We all, of course,  still hope for a cure for cancer,  and new immunotherapies have given us more hope one will be found.  Yet heart failure, by contrast,  is a condition that isn’t cured by drugs, rather they are used to improve heart functioning for as long as possible.  Inevitably, the prognosis for heart failure patients has the upper hand, and the heart continues to weaken.  As I was assigned to explore questions for the category of “transitions” in a proposed model for heart failure care in Canada, I couldn’t help but think about the different implications what “transitions” between the way we’d used it a week ago at Gilda’s club and how, in this new effort to define a model of care for heart failure, a somewhat different meaning is implied.

Heart Failure, which I have, is a growing — and all too silent — epidemic according to Dr. Paul Fedak, a cardiac surgeon at the University of Calgary.  He explains: “Heart failure is the end result of all cardiac disease.  You get heart failure from everything that goes wrong with your heart–all roads lead to heart failure.”  While cancer remains the leading cause of death in Canada, heart disease is the leading cause of premature death for women.  In the US,  heart disease is the leading cause of death for both men and women with cancer running a close second.    Yet I cannot help but consider the number and variety of support programs for cancer patients that are far more developed, available and varied in both countries. than resources for heart disease patients.

I’ve been part of the cancer community for nearly twenty years, and gratefully so.  When asked to introduce myself on this morning’s call, I said that I was someone whose practice has been focused on individuals living with cancer by supporting their emotional, spiritual and creative well-being through encouraging the writing and sharing of their illness stories.  The thing is that the prevalence of a variety of supportive care programs, such as we have in the cancer community, are scant by comparison in the heart failure community, although there are some recent efforts, like the HeartLife Foundation of Canada, working to provide information and resources as well as create a sense of community through social media.

I have come to realize now that my work with cancer patients and survivors has been my greatest teacher in  understanding the impact of serious or terminal illness on our lives.  My personal experience with cancer was not a  life threatening one.  But the negative side effect of my treatment didn’t make itself known until my diagnosis of heart failure eight years later.   It wasn’t until that incident,  perhaps, that I understood how the fear of premature mortality that can inhabit anyone’s mind who is diagnosed with cancer.  Heart disease and stroke kill seven times as many women as breast cancer, for example, and in Canada, a woman dies of heart disease in Canada every 20 minutes! According to the Canadian Heart and Stroke Foundation, women are five times more likely to die from heart disease than breast cancer. But it turns out that there are issues in research and treatment of heart disease and failure when it comes to gender.  Two-thirds of heart disease clinical research still focuses on men.  “Women are under-researched, un-diagnosed and under-treated, undersupported and under aware,” according to Yves Savoie, CEO.   “It’s unacceptable, and the situation has got to change–we need to smash this glass ceiling.”

Ironically, my cardiologist believes my heart failure was likely the result of radiation therapy I received for DCIS in my left breast eighteen years ago.  I was given “gold standard treatment,” as my oncologist described it, yet I didn’t feel like I was truly a cancer patient.  And I wasn’t, not really, because a short time later, DCIS was reclassified to “pre-cancerous,” so it was only after I collapsed  while walking my dog in December of 2008 and was diagnosed with heart failure, that I truly understood the words of Alice Hoffman, novelist, reflecting on her cancer experience:        

“Cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.” (“Writers on Writing, “New York Times, August 2000).

Cancer treatments have gotten progressively more refined and better, and now with new advances in immunotherapy, there is even more reason to have hope for a cure.  Heart failure treatment continues to improve as well, although it isn’t about cure as much as it is in medication that can help to improve, for as long as possible, the heart’s functioning,  but the slope is still gradually downhill, and one’s “destiny” is never far from consciousness.

What strikes me now, as I continue to go to my cardiology appointments, have tests, receive new or increased medications and talk with my cardiologist (who is truly exceptional) is how solitary a journey having heart failure has felt like to me when I  consider the supportive care and community organized around  individuals living with cancer.

Or have I been in denial?  Perhaps, to some extent, but for the seven plus years I was being treated for this condition in California, other than one “educational” workshop on heart failure, which failed to do much to enlighten me, I never encountered or was told about other programs supportive to heart failure patients.  While I read research studies on heart failure, I do it in small doses, because my sleep is woefully interrupted by the facts and statistics.  Yet I am gratified to be pulled into action concerning the condition I and so many others have, or as my cardiologist would call it, “engagement.”  In fact, at my very first appointment with her back in December of 2017, she asked, “Do you want to just be retired or do you want to be engaged?”

I was perfectly clear.  “Engaged,” I said. “I have no idea what just being retired would look like.”

“Well, we’re going to get you engaged,” she said emphatically.

And she did.  Four months later, I sat in a group meeting on Heart Failure Access in Canada, all the while wondering how on earth I could possibly contribute to the discussion in any meaningful way.  Yet perhaps now I’m realizing I can be helpful in offering a patient perspective as the committee works  to define an optimal model for Heart Failure Care in Canada.  And that has a lot to do with the past 18 or so years of facilitating expressive writing groups for men and women with cancer.  A vocation, I’ve said, that has always been dear to my heart…little did I realize how much.

Perhaps all that I have learned, cherished and experienced as part of the cancer community, and most of all, from the honesty and vulnerability of those who have come to write and share their stories and lives with me in the writing groups, will help be me a better patient and participant in this community of cardiologists, nurses and heart failure patients.

And perhaps I won’t feel, as I have in the past, as lonely in the journey of being a woman living with heart failure.

My outlook is it’s not how long you live, it’s what you put into your life.Simon Morgan, 58, ( dilated cardiomyopathy;  heart transplant patient, UK)

Writing suggestions:

  • Cancer or any serious illness can be a great teacher.  What have you learned from cancer or other major hardship?
  • In your cancer experience, think about the kinds of support and help you were given.  What was most helpful?  Describe it and explore why you found it as valuable as you did.
  • Think about transitions–the many times in your life you’ve experienced that “in-between” period during change from one part of your life to another.  What meaning does “transitions” imply for you?  Why?

The art of reading is in great part that of acquiring a better understanding of life from one’s encounter with it in a book. — André Maurois

It’s taken me the better part of three days to organize my books into some kind of order on my bookshelves.  In part, I have a lot of books, although far fewer than I used to when our move back to Toronto dictated some serious downsizing of our belongings.  Despite my reluctance to let many of them go, a feeling much like saying good-bye to old friends, I did, inviting writing group members to choose from the books tagged for donation, giving a few favorites to friends, and donating several boxes to the local library.  Yet I kept favorites, volumes of poetry, selected works of fiction, books on art and writing, and to my shock, I still had enough to fill three large bookcases.

The process of organizing was a slow one, alphabetizing poetry books, grouping fiction favorites and then nonfiction before several volumes on writing and poetry craft, even several favorite children’s books I have yet to let go of.  But as time-consuming as the basic task was,  I was further slowed in my progress by the constant desire to open a book to a dog-eared page, re-read the underlined passages, someone’s inscription on the title page, or if poetry, more than one of a poet’s collection.  I was often lost in remembering:  where I was, what was going on in my life, why I loved a book or a poem as much as I did.  My books, it turns out, have been as much a source of healing and happiness as they were about learning and growth.

“And death shall have no dominion,” Dylan Thomas wrote in his poem by the same name, his words offering me some measure of solace in the wake of my first husband’s drowning:

And death shall have no dominion.

They shall have stars at elbow and foot…

Though they sink through the sea they shall rise again;

Those lovers be lost love shall not;

And death shall have no dominion…  

My volume of e.e. cummings Complete Poems 1904-1962 was filled with marked up passages, asterisks, and dog-eared pages, among them one that during my recovery from grief and loss offered me hope and a new way of living:

may my heart always be open to little
birds who are the secrets of living
whatever they sing is better than to know
and if men should not hear them men are old

may my mind stroll about hungry
and fearless and thirsty and supple
and even if it’s sunday may i be wrong
for whenever men are right they are not young…

I pulled Wallace Stegner’s Pulitzer Prize winning novel, The Angle of Repose (1971), sitting down to re-read several pages.  I remembered reading the novel shortly after I  moved my children and myself from Halifax to Toronto two years after my husband’s death to begin my doctoral studies.  I was aching from loss and longing for what I still called “home,” the small Northern Californian town where my father’s family had homesteaded, settled and where, each day of my childhood, I gazed at the beauty of Mt. Shasta, one of the volcanic peaks in the Cascade Range.

Stegner’s book was a powerful read for me, and he became one of my favorite writers.  In Angle of Repose,  the protagonist, Lyman, a writer confined to a wheelchair, had been recently been abandoned by his wife.  He was filled with bitterness and a sense of defeat.  After moving into his grandparents’ house, he decided to chronicle his grandparents’  early days in the western frontier.  As he read through his grandmother’s letters, he discovered much more about their marriage, struggles and difficulties than he anticipated. Through their story, he learned not only of their lives, but his own.

I sampled passages from several of the pages, in awe of Stegner’s command of language, his deep understanding of the challenges of early life in the  West, and the way in which he artfully moved from the struggles of the grandparents to his protagonist’s.  There were lessons in the book had real impact for me at the time,  and I had underlined passage after passage.

  • Home is a notion that only nations of the homeless fully appreciate and only the uprooted comprehend…” 
  • Hope was always out ahead of fact, possibility obscured the outlines of reality…” 
  • We must be reconciled, for what we left behind us can never be ours again…”
  • She saw in his face he had contracted the incurable Western disease. He set his crosshairs on the snowpeaks of a vision.

It’s no surprise, perhaps, but as my shelving slowed and I paused to page through one book after another of the books I’d loved, I was reminded that reading, perhaps as much as writing, was not only an important part of my daily life, but of healing and happiness.

“Medicines and surgery may cure, but only reading and writing poetry can heal.”                    J. Arroyo, author

It’s not a novel concept (no pun intended).  The notion that books can make us emotionally, psychologically and even physically better goes back to the ancient world.  “The Reading Cure,” published in a 2008 issue of The Guardian reminds us that Apollo was not only the Greek god of poetry, but also of healing.  Aristotle believed literature had healing benefits and could be used to treat illness.  Hospitals or health sanctuaries in ancient Greece were typically situated next to theatres, most famously at Epidaurus, where dramatic performances were considered part of the cure.

One sheds one’s sicknesses in books– D. H. Lawrence

A few months ago, a friend sent me a link to a 2015 New Yorker Magazine article “Can Reading Make You Happier?” by Ceridwen Dovey.  Dovey explores the origins of Bibliotherapy, which is defined in the Oxford English Dictionary as “an interaction between the reader and certain literature which is useful in aiding personal adjustment.”  Bibliotherapy is a therapeutic practice, widely used in the U.K., that uses words to soothe the emotions and alter thoughts and to help people deal with psychological, social and emotional problems.   Covey notes that the Ancient Greeks inscribed a library entrance  in Thebes as a “healing place for the soul, noting that Shakespeare, in the play “Titus Andronicus,” encourages the audience to  “Come, and take choice of all my library, And so beguile thy sorrow …”

Bibliotherapy came into its own at the end of the nineteenth century. Sigmund Freud began using literature during psychoanalysis sessions, famously remarking, “Whenever I get somewhere, a poet has been there first.”   Following World War I, as traumatized soldiers returned home from the front, they were often prescribed a course of reading. Later in the century, bibliotherapy was also used in hospitals and libraries, and since, the practice has been utilized by psychologists, social and aged-care workers, and doctors as a viable mode of adjunct therapy.

You may be interested to know that there is scientific research that supports health benefits of reading, for example, Covey cites a 2011 study published in the Annual Review of Psychology that showed when we read about an experience in a novel, we draw on the same brain networks when we’re reading stories and when we’re trying to guess at another person’s feelings.  And other studies suggest that people who read a lot of fiction tend to be better at empathizing with others.  At the very least, reading does boost your brain power, like a good jog exercises your cardiovascular system, and it can help you relate to others feelings, particularly if you read literary fiction.  Reading helps us relax, and reading before bed even helps us sleep.

But perhaps the most important thing reading does for us is in its capacity to open our eyes, minds and hearts to the larger world, to immerse ourselves a world beyond our everyday lives, and to find ourselves among the words another has written on a page–words that speak to what we are experiencing, that remind us of hope and healing.  What good literature can do and does do best, for so many of us, is touch our souls.

From Great Expectations I learned the power the stories we tell ourselves have to do either harm and good, to ourselves and to others; from Death of a Salesman I learned the dangers of a corrupt version of the American Dream; from Madame Bovary, I learned to embrace the real world rather than escaping into flights of fancy; from Gulliver’s Travels I learned the profound limitations of my own finite perspective; and from Jane Eyre I learned how to be myself. These weren’t mere intellectual or moral lessons, although they certainly may have begun as such. Rather, the stories from these books and so many others became part of my life story and then, gradually, part of my very soul. –Karen Swallow Prior, The Atlantic, 2013. 

Writing Suggestions:

  • Consider how reading has played a role in your life.
  • What role does reading play in your life?
  • What kind of books or literature do you most prefer? Why?
  • Has reading helped you during difficult periods in your life? How?
  • What are some of your most memorable or enduring books or poetry you’ve experienced? Why?
  • Describe a difficult time in your life and a book or poem which offered you some solace and insight.

 

This morning, I opened my notebook for the first time in more than two weeks, a lapse created by the intensity of preparing for a move to a new apartment, then living among the boxes as we tried to make sense of fitting ourselves and our lives into a smaller space once again.  My pen felt awkward in my hand, and for a few minutes, I wrote aimlessly, without, it seemed, direction or meaningful content, before I paused, the wrote, I have missed my routine of writing–the space and quiet of solitude, hearing myself think, sorting out what I feel and stumbling in to a new insight or discovery.

When our lives are in upheaval, no matter the precipitating event, it’s not uncommon that the routines or daily rituals that we find calming and that help keep us centered, fall by the wayside.  Whether cancer or other serious health issues, job loss, aging and retirement or, as we have done in the past week, changing residences, we’re thrown off-balance, into a maelstrom of confusion, stunned, ill-prepared and questioning ourselves and our lives.  As one poet put it, it’s a bit like living atop a fault line…

passing underneath your living room:
A place in which your life is lived in meeting
and in separating, wondering
and telling, unaware that just beneath
you is the unseen seam of great plates
that strain through time? And that your life,
already spilling over the brim, could be invaded,
sent off in a new direction, turned
aside by forces you were warned about
but not prepared for?

(From:  “Fault Line” by Robert Walsh, In:  Noisy Stones:  A Meditation Manual, 1992)

Our moves, first from California back to Canada just one year ago, and now to a more convenient but somewhat smaller apartment in Toronto, have been welcomed, yet more challenging than either my husband or I anticipated.   It’s been much more than simply changing domiciles.  It’s the realization, coupled with the necessary downsizing, letting go of old mementos and boxes of belongings that tell the stories of our younger and different lives, that we are growing older, just as our parents did before us.

Like it or not, life for all of us keeps changing, and many times the changes are ones we don’t expect or underestimate the impact they have on us.  I ended my morning write, briefly describing what turned into an ordeal of moving, even though it was only nine minutes from our old apartment, writing Life continues to change and requires that we, too, adapt.  Change is the human experience.”  It’s true for all of us.  We think we’ve “arrived,” settled into a place, a career, and then something unexpected happens.  I recall Joan Didion’s first words her memoir of loss and life change,  “Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends. ― In:  The Year of Magical Thinking, 2007

Life, whether we like it or not, hands us events we have little or no control over: life-threatening illness, significant loss, tragedy, suffering, aging.   As sociologist  and cancer survivor Arthur Frank stated, “…by the time we have lived through it, we are living differently” (from:  At the Will of the Body, 1991).  Who we are, truly, may become more apparent how we choose to deal with our illness or loss.  This is what makes us uniquely human–our spirit, determination, resilience—and they are never more apparent than when we are faced with the unexpected, even the inevitability of our lives changing.

Any life threatening illness, significant loss or tragedy changes us.  As Professor Emeritus of Sociology (U. of Calgary) and cancer survivor Arthur Frank stated, “…by the time we have lived through it, we are living differently” (in At the Will of the Body, 1991). Who we are, truly, may become more apparent in how we choose to deal with the unexpected and inevitable changes we experience. This is what makes us uniquely human–our spirit, determination, resilience—and they are never more apparent than when illness or loss strips all pretenses away.

Life will sometimes wallop us, brings us to our knees, to tears, and yet it is our greatest teacher too.  It says, “Listen up,” and teaches us something about ourselves.  All we know for certain is that life will change again–and again.  We will be affected, perhaps multiple times, by a triggering event, whether tragedy, illness, empty nests, unimaginable loss or awakening to the reality that we are moving toward the winter of our lives.  It is the realization Linda Pastan describes in her poem, “Elegy:”

Our final dogwood leans
over the forest floor…

It’s a relic
of the days when dogwoods

flourished…

When I took for granted
that the world would remain

as it was, and I
would remain with it.

(In: Insomnia, 2015)

We all can be lulled into taking life for grantedthat the world would remain/as it was, and I/would remain with it.  No matter what the actual event may be that brings us to our knees, we are forced to acknowledge and accept that our lives will change, not once, but many times.

How can you navigate life’s changes more successfully?  Transition has been written extensively about, and there are things you can do to lessen the upheaval and stress that comes with it.  Carol Berman, MD, writing in The Huffington Post, offers a few common sense suggestions for navigating through life transition and change:

  • Instead of being passive, try being active, anticipating outcomes, strategies you can employ to make the process of change better.
  • Take the time to acknowledge the past, the present, and what you believe is the future. 
  • If you experience strong emotions, such as anger or sadness, acknowledge them.Don’t stuff them down deep inside. Our emotions are pathways to a deeper and intuitive part of ourselves.
  • Breaking your transition into smaller steps can help you deal better with them.  When a major change is broken down in this way, it is not so overwhelming.
  • Reinforce and celebrate the positive steps you take towards navigating your transition.Give yourself a pat on the back!
  • Learn what a particular change or transition may mean for you.There are many resources on the major life events that affect our lives, whether cancer, parenting, retirement, job loss or many others. Read, talk to others who’ve experienced what you are going through.  It can help.
  • Reframe what change is to you. Change your perspective.  Life happens, and it changes constantly. If you don’t like what’s happening to you now or even if you do, the one certainty we all have is that it will change.

It’s taken me much longer to write a post this morning after a two week hiatus, and it was (I’ll admit) difficult for my perfectionist self to refer you, my readers, to the archived and previously published posts while my husband and I were consumed by our  moving process the second year in a row.  The good news is that the entire experience forced me to be a little more self-forgiving, to slow down and deal with the mountain of details and boxes that cluttered up my life for the past many days.  Change may be unsettling, but it is, after all, a great teacher if we let ourselves learn from it.  In the end, we discover that the resources for navigating through the ups and downs of life reside in us– not always easy, but necessary.  I turn to a favorite passage from the poet Wendell Berry as a reminder:

…And we pray, not
for new earth or heaven, but to be
quiet in heart, and in eye
clear.  What we need is here.

(From: “The Wild Geese,” In: Selected Poems of Wendell Berry, 1998)

Writing Suggestion:

  • Before you write a longer piece, brainstorm: List the different/most memorable events that triggered significant life change for you, e.g., breast cancer, father’s death, loss of a dear friend, losing house to fire (earthquake, flooding, etc.)… Then, without spending too much time on each, start a another list, only this time, for each event, complete two sentences: “Before _____________, I was____________.  After _______________ I was _____________.
  • From your list, choose the change/event that was most difficult for you to experience. Tell its story.  What was the triggering event?  How did you react?  What were the emotions you experienced?  How did you navigate through the change?  What or who helped?  What hindered? What did you learn?