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Archive for the ‘expressive writing’ Category

A Lesson

By Judy Rohm

 

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.

It’s a lesson taught by trembling hands

That squeeze from today a second cup of coffee

On a sunny deck with someone you love.

It is a slap that sends you flying from Michigan

To Cozumel because cancer teaches that snorkeling

Coral reefs pays greater dividends than a savings account

And mowing summer grass can be postponed

For bike rides past wild flowers and country streams,

And vacuuming the carpet and washing the windows

Are low priority items when a friend drops by to visit.

Cancer is not a gift but a lesson

Full of loving now and living presently.

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

“Cancer is not a gift, but a lesson…” Judy Rohm tells us in her poem.  We don’t wish for the pain of the lessons it teaches us, and yet, we’re often forced to re-examine our lives and change our perspectives.   Like it or not, life throws us curve balls, unexpected and difficult chapters in our lives we have trouble believing have happened.  Cancer is one of those, yet as more than a few survivors have said, “It is a great teacher.”

Cancer, like any life threatening illness, puts us face-to-face with the prospect of our mortality, perhaps sooner than anticipated.  It makes the lessons of our experience and the learning all the more potent.  Alice Hoffman, novelist, writing after her recovery from cancer,  aggressive cancer, expressed it this way:

“In my experience, ill people become more themselves, as if once the excess was stripped away only the truest core of themselves remained.   …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.” (New York Times, August 14, 2000)

That transformation to one’s “truest core” was something I have been witnessing each week among those cancer patients and survivors who have written with me in the Fall session of the “Writing Through Cancer” workshop series I lead at Gilda’s Club here in Toronto.  This past Wednesday was our final meeting of the series, and I began the session by reading Judy Rohm’s “The Lesson,” using it to inspire the group to answer the question, “What have you learned from your cancer experience?”  Within moments, pens were moving quickly across their notebook pages.  When I asked who would like to share what they’d written aloud, one by one, each person shared aspects of their lives they wished to change, strengthen or enrich as a result of having and living with cancer.

As I listened to each person read, I remembered John, no longer living, but who had written with me at the Stanford Cancer Center several years ago.  John was a remarkable person,  diagnosed with acute lymphoblastic leukemia in 2005, suffering a relapse in 2008 and undergoing a bone marrow transplant at Stanford that fall.  Two years later, he suffered another setback, and yet, his spirit and tenacity remained strong.  He continued to share his experience, writing honestly, humorously and with poignancy as his illness worsened, even  beginning a blog to share his experience with other patients, family and friends.   J. and I had stayed in touch despite his inability to travel and participate in the writing group.   Early in 2010, just months before he died, he sent me an essay entitled, “What I’ve Learned,”  saying he’d taken inspiration from Esquire Magazine’s then series by the same name.  Here are a few of the things John felt he’d learned from his cancer:

  • If you have a problem, admit it, then you can start to fix it.
  • Work at what you love, forget about the money.
  • Tell your wife how beautiful she is every day, and how much you love her.
  • Tell your kids that you love them, unconditionally. Hug them and encourage them to follow their dream.
  • Listen more and talk less. Be interested in other people’s stories.
  • Don’t assume what you see and believe is the same as what others see and believe. Respect other viewpoints.
  • In the end, all your physical beauty and prowess will leave you. You must still love that person in the mirror.
  • Travel light.
  • We all will die eventually, so find a way to face death without fear. Don’t dwell on death, but enjoy each day as best you can.

Other survivors have also reflected on cancer’s lessons. Writing for a January 2018 issue of Cure Today, cancer survivor Bonnie Annis described what she has learned:  … cancer taught me was to give myself permission to grieve …This did not happen suddenly. It took days and weeks and months, but gradually, the sadness grew less heavy…cancer taught me how to process my anger. At first, I didn’t realize I was angry. …as I thought about all I’d endured, I realized I was angry. I was bitter. I was hurt… And then cancer did the unexpected… [It] taught me how to find gratitude…gratitude can replace grief and anger… Cancer, even with all of its horrible ugliness, can be kind in the lessons we learn from it. But we have to be willing to look for the lessons.             

Author Jenny Nash, diagnosed with breast cancer several years ago, described her cancer experience in her book, The Victoria’s Secret Catalogue Never Stops Coming,” (Scribner, 2001). Each of the thirteen chapters bears the title of one Nash’s lessons.  Here are a few:

            Survival is a matter of instinct.
Bad news does less damage when it’s shared.
Caregivers are human.
Sometimes crying is the point.
Take the gifts people have to give.
Make the experience matter.

The power and lessons of the cancer experience aren’t reserved for survivors alone.  The experience of a loved one’s cancer diagnosis and treatment also affects those close to us. During a 2006 CBS television broadcast, National Geographic photographer Joel Sartore, whose wife was treated for cancer, spoke from a spousal perspective:

     Now, forgive me for saying this, but cancer can also be …an amazing experience that forces us to make amends, to set things right… now I’ve changed, and for good. I appreciate what I have instead of lamenting what I don’t … a new life and a new way of seeing, all from one malicious lump.
On our drives home from the doctor, I’d often look around at stoplights. I’d see people talking on their cell phones, putting on makeup, eating. They’re all in a hurry. It all seems so important. But is it?
In the end, each of us has so little time… we try to make it all count now, appreciating every part of every day.  Sometimes, we sit together on our porch at sunset. We don’t talk much. We just hold hands. We listen to the crickets chirp, soft and cautious, as if they know that first frost might come tonight. We stay a while, until the last of the light is gone, until we can’t see anything. Until we’re just two hearts in the darkness. We’re in no hurry at all.
(CBS Sunday Morning, October 23, 2006).

There are common themes among the lessons shared by cancer survivors, but it’s Sartore’s words that linger in my mind as he reminds us to “try to make it all count now, appreciating every part of every day.”  It’s about being present and living fully.  “Make the experience matter,” Jenny Nash advised.  If we don’t pause and consider what has changed in our lives and what we have learned, the tendency to lapse into old ways of being begins its slow and steady reclamation.   Life is short, and cancer or any other serious illnesses makes us sit up and pay attention to life, having it and being grateful for it.  Perhaps this is best expressed in a short poem written by As Ted Kooser, former poet laureate of the U.S., inspired by one of his long walks in the Nebraska countryside while he was recovering from cancer.

I saw the season’s first bluebird
this morning, one month ahead
of its scheduled arrival.  Lucky I am
to go off to my cancer appointment
having been given a bluebird, and,
for a lifetime, have been given
this world.

(In:  Winter Morning Walks:  One Hundred Postcards to Jim Harrison, 2001)

 Writing Suggestions:

  • Have you reflected upon and written about the lessons you’ve learned from cancer?  Why not set a timer for 15 minutes and, writing without stopping, list as many of the lessons cancer has taught you as you can.  Once you’ve finished your list, read it over and, noting the most important in the list, begin writing again, only this time, expand on those lessons.  Imagine you’re writing to a friend or someone who is experiencing cancer treatment.  What would you highlight as your greatest lessons from cancer?
  • “Cancer is a great teacher.” Do you agree?  Why or why not?  Elaborate.
  • What do you intend to do differently in your life as a cancer survivor?
  • Try writing a short poem in the style of Kooser’s that expresses the lessons of cancer and the gifts of your life.

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We all need friends.  Without them, our lives can seem empty and lonely, and there’s plenty of research that suggests that isolation and loneliness are often harbingers of emotional or physical illness.  The bottom line?  We need our friends, and when we’re in the throes of life’s struggle and hardships or a life-threatening illness like cancer, we need our friends even more.  As Stacie Chevrier, writing for Cure Today stated, “What keeps us from drowning in the sea of change are the people in our lives who come to the rescue:  our friends and family.”

…you got to have friends
The feeling’s oh, so strong
You got to have friends
To make that day last long…

(From:  “Friends,” Bette Midler, The Divine Miss M, 1972, lyrics by Mark Klingman and Buzzy Linhart)

Bette Midler’s recording of “Friends,” was a song I listened to night after night in the wake of my first husband’s sudden death many years ago.  It reminded me that despite everything, I was blessed with good friends.  At the time, I was living in Nova Scotia, a young wife and mother, far from my California family and friends he and I shared in university, but I wasn’t without friends.  My Nova Scotia friends were invaluable in helping me weather the shock, grief and loneliness, always there whenever I needed support or a helping hand, the same friends who celebrated with me as I regained my footing and created a new life for myself.

Several of those long ago friends were still present as my husband and I learned, quite unexpectedly, he had kidney cancer and had to have one kidney removed.  They, other Toronto friends and ones from the West and East coasts, California and elsewhere, were with us, in person, by telephone and email, sending their healing thoughts and prayers, driving us to the hospital at five a.m. on the morning of the surgery, sitting with me in the waiting room, and dropping by with homemade lasagna, a turkey dinner, and soups once my husband came home from the hospital.

This time too, we had family nearby:  our eldest daughter, her spouse and child.  My younger daughter and her family live in Japan, but she kept in close touch, sending her trademark humorous messages and words of her children that made us smile.  Our Toronto family members were invaluable:  accompanying my husband to his pre-surgery appointment when I couldn’t, due to my own medical appointments.  And, on the afternoon he was discharged–a full day earlier than anticipated and taking me by surprise (I was presenting that same day to a group of patients and families affected by SADS, Sudden Arrhythmia Death Syndromes)–my daughter and granddaughter drove him home from the hospital arriving only minutes after I did.

The gifts of friendship didn’t stop there.  I heard from several former members of my cancer and creative writing groups, messages of compassion, understanding and care, which touched me deeply.  Even a stranger, a man who follows this blog, shared a poem he’d written about “waiting,” after I posted my reflections on hospital waiting rooms two weeks ago.  It was difficult to read these notes as my eyes filled with tears as I read the expressions of concern and care from others who are well acquainted with the cancer journey.  Even my husband, not usually one to share his feelings, posted a thank-you on Facebook, writing, Thanks to everyone who sent us messages of support and love. I have never previously experienced this kind of event that had me feeling so devastated and afraid. Your support has meant the world to Sharon and to me.

In short, we experienced what the research has long confirmed   Friends matter in all kinds of ways.  They are important in helping us fight illness or depression.  They help us recover from illness, trauma and loss.  And in old age, it’s having friends that helps slowdown the aging process and prolong life.  “Good friends are good for your health,” the Mayo Clinic reports.  They celebrate the good times and provide support in the tough times.  They keep us from being lonely, and we, as friends, return the gift of companionship.

Remember the song “You’ve got a friend,” written and recorded by Carole King in 1971?  James Taylor’s recording of it the same year was  number 1 on Billboard’s “Hot 100.”  Since then, it’s been sung and recorded by dozens of vocalists, a testimony to the importance of the enduring, and true friendships in our lives.

[Chorus:]
You just call out my name
And you know wherever I am
I’ll come runnin’, runnin, yeah, yeah,
to see you again
Winter, spring, summer or fall
All you have to do is call
And I’ll be there, yes I will

Now ain’t it good to know
that you’ve got a friend… 

It’s been good for me and good for my husband to experience the friendship of new friends and old, acquaintances, and even strangers, during a time dominated by fear, worry and questions that we dared not voice to one another.  Happily, my husband is recovering well, and we are grateful to know that there is no evidence the cancer has yet spread to other organs.  Once we have his pathology report in a few days, a course of treatment will be determined.  Whatever is needed,  we will take in stride, because that’s what we all have to do–deal with what is in the most positive way.  Nevertheless, it’s easier to be stronger, more hopeful and optimistic because of the love, compassion and concern of our friends.  While it’s true that some friends don’t come through during tough times,  something my writing group members have shared and something we experienced too, the disappointment is all but erased as new friends and acquaintances show up with different acts of kindness,  reaching out to us across the miles with a call, a note, an email, or offering a ride, meals, a cup of coffee, and laughter–and that has meant so much to both of us.

Friends.  Friendships.  Gratitude…for our friends:  their simple gestures of caring and concern have been the most powerful medicine anyone could ask for.

…Now ain’t it good to know/that you’ve got a friend…

Writing Suggestions:

  • Write about friendship.  The ones that endure; the others that don’t.
  • Write about the acts of kindness you’ve experienced during your cancer experience or other tough times.
  • “Before you know kindness,” Naomi Shihab Nye wrote, “you must lose things…”  Begin with her line and let it take you into your own story.
  • Write about an enduring friend, a friendship that has lasted many years.  How did it begin?  What have you shared together in your friendship?  Explore why this friendship lasts and others don’t.

 

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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…

(From: “What Waiting Is,” by Robert Carroll, 1998)

We are all forced to wait many times in our lives, and this week, I’ll be in the role of the loved one, the spouse, who will likely be experiencing the toe-tapping, check-my-wrist watches moments where I am rendered powerless to do anything but wait.  As my husband’s surgery date has drawn closer, the undercurrent of worry and restless nights has increased.  By day, I am calm and supportive, by night, the concern and anxiety rise to the surface as I lie in the dark.  Anyone who is living, as the patient undergoing surgery or the family member restlessly sitting in the surgical waiting room, knows the tension and anxiety of waiting intimately.  This kind of waiting, whether patient or family member, is torment, as writer Susan Gubar describes:

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? (From:  Well, “Living With Cancer: Hurry Up and Wait,” The New York Times, December 3, 2015).

But for the family members confined to the surgical waiting room, the experience of waiting during the surgery and for the news of the surgical outcome, the hands of the clock on the wall move slowly, despite how many times we check it or our watches.  It’s a different kind of agony.  

“Here, stress, anxiety, uncertainty and fear serve to make even the shortest of waits seem unbearable.  Families sit crouched forward in their uncomfortable chairs watching the door in hopes of preservation of a life or, unfortunately, sometimes by a less desirable outcome.”  –Kevin Campbell, MD, “The Psychology of the Surgical Waiting Room: Personal Adventures in Waiting,” 2012)

It’s been decades since I waited for more than an hour in a hospital waiting room for anything more than a loved one’s minor surgical procedure.  Thursday’s surgery will be much longer; a two-hour pre-op  process, the actual surgery estimated to be three and one half hours. Time will, I know, seem elongated, as if it stands still.  “Every watch is broken in the waiting room, ” Nurse Sonja Schwartzbach writes in a recent Huffington Post article, “better to count your blessings than to measure the seconds.”  Kevin Campbell, MD,  notes there are four common themes to the psychology of waiting:

  • Unoccupied time feels longer than occupied time.  I’m armed with novels and my computer to help the time pass.  Weather permitting, I may take a walk.
  • Anxiety makes waits seem longer.  Like it or not, we feel anxiety when a loved one is under the knife.  Endurance may be the only solution–that and deep breathing.
  • Uncertain waits seem longer than finite waits.  I have an estimate of the total time before my husband is out of surgery from the moment he is admitted for the pre-op procedure.  That helps, but I doubt it will have only minimum impact on the monotony, anxiety and fatigue of waiting.
  • Solo waits seem longer than group waits.  I expect this may well be true for many people.  I’m not one of them, preferring to keep my worry quiet.  The well-intentioned concern expressed as questions about next steps, treatment options, referrals to another specialist tend to exacerbate the anxiety I feel.

“For family members…the moment my patient is wheeled into the operating room is when loved-one-limbo begins,” Schwartzbach states.  “Everyone feels like an uninvited guest in an unfamiliar residence…the element of the unknown prevails…”  She describes the difference in the way strangers interact in a hospital waiting room:  some share laughs and jokes; some sit still and lifeless, waiting for a surgical update.  Others, and I am in this category, sit, observing the dynamic, waiting for what has been unraveled in one’s life to be stitched back together.  “Doctors use sutures and glue.  Writers use moments and moods.  One heals the body…the other heals the soul.”

Waiting has never been easy for me.  I am action-oriented, even impatient at times, yet I know that while time may seem unending on Thursday, I will have no choice but to accept what I cannot control, to let things unfold as they will.  It’s life– it requires I learn to wait.

But the faith and the love and the hope are all in the waiting.

(From The Four Quartets, by T.S. Eliot, 1943)

 

Writing Suggestions

  • Write about an experience of having tests, biopsies, or surgeries as part of your treatment for cancer.  Describe the waiting, what you felt and why.  You might try writing a poem that also captures the experience of waiting for results when the outcome could be either positive or negative.
  • If you are the partner or family member of a person who has undergone serious surgery, write about the waiting, the waiting room, the emotions that accompanied your wait in either narrative or poetic form.
  • If you have any advice to those who are going through treatments, tests and surgeries and waiting for the outcomes, what would it be.  Try writing an open letter to these individuals.

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He said it doesn’t look good
he said it looks bad in fact real bad.

(From:  “What the Doctor Said,” by Raymond Carver)

“Write about the moment when the doctor said, ‘Cancer.”  It’s usually one of the first prompts I offer in the beginning session of my “writing through cancer” workshops.  That moment of confirmation, the seconds in which a physician delivers the words that will, in an instant, change your life forever, is something everyone in the group shares, an event that evokes strong emotions as it gets written about and described.

I heard those words myself, or some version of them, over eighteen years ago after a routine mammogram, one that became, as the technician kept returning to the room to say, “I need to take a couple more images,” anything but routine.  But my diagnosis was not life threatening, not the sort that sends you home thinking about mortality.  This past week I heard the words again, only I am the wife of the man to whom the surgeon’s words were directed.  “Stage 3.  Kidney cancer.”  Surgery in two and one half weeks to remove one kidney and determine if the cancer has spread as, we could easily tell, he suspects.

I listened, intent on capturing everything discussed in my notebook, turning to study my husband’s face as together, we looked at the CT scan and listened to the surgeon’s explanation.  At one point, I felt the rush of emotion and forced myself to not cry, so that I could stay focused on how John was receiving the news.  I remembered Joan Didion’s words, “Life changes.  Life changes in an instant.”  And so it was changing, right then, in a brightly lit examination room of a surgeon’s office.

As we drove home, I said, “I always thought I’d be the first to go.”  For the past several months, our focus has been on me, my heart failure and treatment–a condition, ironically, the cardiologist believes was likely the result of damage to my heart caused by the radiation I had eighteen years ago.  My husband, on the other hand, has always been remarkably healthy.  His father, a physician, died just days before his 99th birthday, and it was always an assumption that John had his father’s genes and would likely live as long or longer.  Maybe he will yet; maybe not.

You want to forget, for things to be normal, the way they were… It’s like stepping into a swift river; the current of the ordinary grabs you, and before you know it you’re being buffeted against the rocks, on your way over the falls as you watch the shore recede.   It may all be over so soon, you worry in midstream, you won’t have time to do anything at all.–(D.L., cancer patient from a Writing Through Cancer workshop exercise)

“Well,” I said, quoting Gilda Radner, ‘It’s always something,’ isn’t it?”

“It is,” he replied, but I just didn’t expect this.”

“Nor did I,” I said, although we knew, from his family physician’s manner and urgency in getting him to a urologist and surgeon, that it was serious.  “But we’re at the stage in life when “somethings” like this are not unusual.”

“I guess so,” he said quietly.

We rode on, negotiating traffic in relative silence.   Alice Hoffman’s words, written after her cancer recovery that appeared in the New York Times, were rattling around in my head.  “ These are the chapters of your life that wallop you and teach you and bring you to tears,” she said, “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.”(–August 2000).

That evening, I urged him to go to his weekly pool game as always, and I went ahead to have an early supper with a close friend of ours.  “We’re not going to dwell on this,” I said.  “We’ll keep living normally until we can’t.”

And that is what we are trying to do.  We’re quieter, yes, but on Thursday,  we awakened to a beautiful early autumn day and spontaneously decided to drive north from Toronto and visit the McMichael art gallery, which houses many works from Tom Thomson and the Group of Seven, paintings we both love.  The quiet beauty of the grounds, a breeze whispering through tall pines and the first signs of color in the deciduous trees along the route were a balm for both of us.  Last night we went with friends to hear a pianist we did not know, an extraordinary blind artist.  All of us were astounded and enthralled with his selections of  Schumann, Chopin, Beethoven and Prokofiev.

I remarked to a friend that I now realize how, in all the years I’ve been leading the writing groups for cancer patients and survivors, they have been my greatest teachers, preparing me, it now seems, to be able to face this new set of challenges and a husband’s diagnosis in a way that I could not have done many years earlier.  “Cancer,” poet Judy Rohm wrote, “is not a gift, but a lesson/ full of seeing now and loving presently” (“A Lesson,” in:  The Cancer Poetry Project, V. 1, 2001).  And it is living, with open hearts and enjoyment of the present, that we have chosen to do as we navigate through these next few weeks.  Writing in the preface of Survival Lessons (2015), author Alice Hoffman explained,

I wrote this book to remind myself of the beauty of life, something that’s all too easy to overlook during the crisis of illness or loss… I forgot that our lives are made up of equal parts sorrow and joy, and that it is impossible to have one without the other.  This is what makes us human…I wrote to remind myself that in the darkest hour the roses still bloom, the stars still come out at night.  And to remind myself that, despite everything that was happening to me, there were still choices I could make.  

Writing Suggestions:

  • Write about the moment you first heard “you have cancer.”  What thoughts and emotions raced through you?  What do you remember from that moment?
  • If you or your spouse was diagnosed with cancer, how did you choose to live each day and why?  What helped you get through the fears, worry, surgeries and aftermath?
  • What lessons has cancer taught you?  How successful have you been in putting those lessons into practice?
  • If a loved one or a close friend has been diagnosed, how have you shown your love and support?  What would you say to someone who is experiencing this with a family member or dear friend to help them through this kind of crisis?

 

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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

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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?

 

 

 

 

 

 

 

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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.

 

 

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