Category: art and writing

Regaining Your Voice: Writing Cancer

Published on by Sharon A. Bray, EdD

In these long months of social isolation, I have taken more refuge in my morning writing practice than usual, spending the first hours of the early morning alone with my notebook, a thermos of coffee, and my small dog at my feet.  It’s a practice that not only allows me to plumb the depths of my own thoughts and emotions, but it also alleviates the bouts of anxiety I’ve felt during these long months of a pandemic.  Meanwhile, my husband has taken to immersing himself in poetry—a new endeavor for him–studiously making his way through my poetry collection, over 100 volumes accumulated over many years.   He is not only inspired but obviously finds solace his morning reading routine.  And it’s probably no surprise that in the past several months, I’ve been asked to facilitate many more virtual writing workshops with several cancer organizations.  COVID-19 has heightened the need for ways to interact socially and, for many, use journaling or a writing group to help express the anxieties, fears and loneliness of living with cancer – heightened in a time of this pandemic.  

Baking, creative cuisine, binging on British mysteries, and reading have been the other endeavors I’ve exploited during these long months of social isolation, and not surprisingly, a stack of novels sits on my nightstand.  I’ve found it difficult to read nonfiction:  memoirs of suffering and hardship especially.  But, quite by accident, I picked up what I thought was a novel and instead, discovered a powerful and compelling memoir of one young adult cancer survivor:  Between Two Kingdoms:  A Memoir of A Life Interrupted, by journalist and cancer survivor, Suleika Jaoud.  Jaoud was diagnosed with acute myeloid leukemia at the age of 22 and, for the next three and a half years, much of her life was spent in and out of hospital.  After years of treatments, her life was ultimately saved by a bone marrow transplant, and at age 26, she was declared “in remission.”  Whether you’re a young or older adult living with cancer, Jaoud’s story is, at times, terrifying, but searingly honest and poignant.  Before she was diagnosed with leukemia, her dream was of becoming a war correspondent.  Little did she know that the “war” she would be reporting on was her own life and death struggle with cancer. It was during the many months of treatments that she returned to something she had always “leaned on in difficult times:  keeping a journal.” 

“Illness had turned my gaze inward,” Jaoud wrote.  “As a patient you are constantly asked to investigate the body, to report on yourself, and to narrate your feelings…I understood now why so many writers and artists, while in the thick of illness, became memoirists.  It provided a sense of control, a way to reshare your circumstances on your own terms, in your own words.”

Her survival became her creative act, her journaling allowed her a new way to communicate and imagine herself beyond the confines of her hospital room.  Quoting British author, Jeannette Winterson, she wrote “literature offers—a language powerful enough to say how it is.  It isn’t a hiding place.  It is a finding place.”  Not only a place of discovery, but as we have learned from other patients, writers and psychologists, writing can help us heal. Writing through her illness as Jaoud did ultimately led her to the New York Times and an interactive column, “Life Interrupted, where she chronicled her experience as a young adult living with cancer.  

Writing and poetry were part of the healing process for former US poet laureate, Ted Kooser.  He was diagnosed and treated for oral cancer in 1998, and began writing again during his recovery.   For the entire time of his cancer treatment, he had not written at all, describing himself as “depressed by my illness, preoccupied by the routines of my treatment, and feeling miserably sorry for myself… During the period when I was in surgery and going through radiation, I really didn’t do any writing.

As his radiation treatments were ending, Kooser began a routine of early morning walks through the Nebraska countryside in an effort to regain his physical strength and stamina.  On one November morning, he surprised himself by “trying my hand at a poem.”  From that point on, his morning walks became the inspiration for a series of short poems—only a very few mentioning cancer, most inspired by what he noticed while he walked.   He began pasting the short poems on the backs of postcards and sent them to his friend, novelist and poet, Jim Harrison.    (NPR interview, PBS News Hour, Oct. 21, 2004).  The postcards ultimately became a book of poetry:  Winter Morning Walks:  One Hundred Postcards to Jim Harrison, published in 2001, one in which we see the author’s return to his craft and his love of life.

Just as Jaoud found sanctuary and structure in her journaling, Kooser found his poetry writing helped him regain a sense of control, saying, “It was very important for me to see something from each day that I could do something with and find some order in, because I was surrounded by medical chaos or health chaos of some kind.”

Some time ago, a member of one of my past cancer writing groups sent me a note.  Although in remission, she lives with the knowledge that her cancer is a relentless type, but she finds solace in writing.   She is more aware than ever before that “life is short,” and that she—as we all do—needs to be reminded not to waste it nor be consumed by things that do nothing to help us feel fulfilled and happy.  I thought about her this morning as I began writing, recalling the advice of writer, Annie Dillard, someone Jaoud also referred to in her book.  Dillard advice to writers was: “Write as if you were dying.  We are on terminal patients on this earth; the story is not “if” but “when” death appears in the plot line.” 

Dillard’s advice reminds me of the final line in Jim Harrison’s poem, “Larsen’s Holstein Bull,”  “death steals everything but our stories.” Writing is not only healing, but a way to have voice, to discover insight, meaning and creativity, to share stories of not only struggle, but life and healing that touch others’ lives, helping overcome the isolation and loneliness that often accompanies illness and suffering.  It’s why I write, and why I continue to lead writing workshops for those living with cancer. 

Writing Suggestions:

  • What has helped sustain you in these difficult times?
  • If you have used writing as a way of healing, how has it helped you?
  • Have you found others’ words meaningful, whether poetry or memoir?  Which ones and why?
  • For anyone wishing to write out of difficult times, Suleika Jaoud also offers an online site, The Isolation Journals, which features many different creativity prompts. https://www.theisolationjournals.com/

January 16, 2021: The Moment of Diagnosis: Different Points of View

Published on by Sharon A. Bray, EdD

He opens the door

               and walks in,

his face and white coat

stiff with starch,

holds my hand, and

he says,

“I’m afraid.

I am afraid

you have cancer…”

From: “Diagnosis,” by Majid Mohiuddin, in The Cancer Poetry Project)

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

Writing that is most healing has some particular characteristics, as psychologist James Pennebaker and his colleagues have noted, among them, writing that is concrete, vivid, and gives detailed descriptions of trauma, distress and emotion.  When I ask group members to return to that first moment they hear the word, “cancer.” No one ever responds to this prompt with generalities.  And when they read what they’ve written aloud, it’s often emotional, as they remember their doctor’s words, “I’m sorry; you have cancer.” 

Shifting your perspective, from the immediate and first person (“I”) perspective, can sometimes reveal other aspects of your experience.  At the least, it’s interesting to try writing about that same moment of hearing your diagnosis, but instead of “I”, try using third person, “he or she” to refer to yourself.  It forces your perspective to shift a bit, as it you are looking at yourself in that moment and doing so can reveal other insights into what you experienced or how you reacted in that moment.

But consider the other’s point of view:  while those words, “you have cancer,” are unfamiliar and terrifying to us, to the doctor, they are words delivered many times, to many different people.  How difficult must it be to be the physician who delivers those words to a patient?  Not once, but so many times throughout one’s medical career? 

The door seems impenetrable.

Today is arduous.

I have seen patients with cancers of pancreas,

Gastric, cervix, colon—all unresectable…

Why is it so difficult to enter this room?

(From: “The Door,” by David H. Huffman, MD, in The Cancer Poetry Project, v. 1, 2001)

 “The Before,” written by Jennifer Frank, MD and published in the Journal of the American Medical Association, offers the reader a rare—and poignant–glimpse into the doctor’s mind as she prepares to call a patient with a cancer diagnosis, the words no one wants to hear.

This is the before.  A moment suspended like a bubble floating on a warm summer breeze gently but inevitably toward the ground.  I feel the pop coming, an implosion of the very center of your life.  Anticipating what this moment would hold, I nevertheless hoped for something different.  To be able to eagerly dial your number and shout out the good news to you in a breathless rush.  “It’s not what we thought.  It’s not cancer.”

Instead I take a deep breath, pressing each number slowly, cautiously, drawing out the moment before the burst.  The burst of your plans and your dreams and your future.  I stall for time, asking if this is a good time, are you alone, do you have a pen and paper? …

I want to be straightforward but not blunt.  I want to be compassionate but remain professional.  I slow myself down, remind myself that the words I’m about to say are ones that I’ve said before, many times, but that the words I’m about to say are also ones you’ve never heard before… (In: “A Piece of My Mind,” JAMA, March 7, 2012, v.307. no.9).

It’s difficult, when we are the patients, the ones receiving the diagnosis, to understand what is felt by the person delivering the bad news.  We may never completely understand what is behind the doctor’s mask, yet we need the practiced and steadfast hand of a professional to guide us through the upheaval, and help us find our way through a regimen of treatments.  “All I can offer is my hand,” Frank concludes, “…to hold you up, prevent you from going under until the sea calms and the path clears.” 

Several years ago, when I was leading writing workshops for the “Writers’ Workshop at Stanford Medical School,” I invited a group of medical students and physicians to “write about the moments just before you had to deliver bad news to a patient or someone close to you.”  What they wrote and read aloud were achingly honest and no less powerful than those written by the people living with cancer.   Their stories and poems offered a glimpse behind the medical mask, a reminder of what it is to be human, to care and to feel, whether patient or physician.  As Huffman expresses in his poem,

…I can only be forthright and compassionate.

Why is it so difficult to enter this room?

Maybe someday I will be in that bed.

I hope that if that time comes

My doctor will be as truthful and considerate.

But if she hesitates at the door…

I will understand.

Writing Suggestions–Changing Point of View:

This week, write about that moment, the one just before you hear the words “you have cancer.”  Remember, if you can, write in as much detail as you can:  what you were feeling, where you were sitting or standing, what you remember about your doctor’s voice, eyes, face.  Write in the first person, “I.”

Then, as options to try a different point of view, write about that same moment again, but instead of “I,” write in the third person, as if you’re watching yourself from a distance, using “he or she” or she to write about that same moment.  

Now, as an even more intriguing perspective, try putting yourself in your doctor’s shoes and write from her or his perspective.  Imagine you are the one who must deliver the bad news, this diagnosis, to you.  What the doctor might have seen as she or he looked at you or heard when you came to the telephone?  What might she or he have felt?  Write in as much detail as you can. 

When you finish writing in either the third person to refer to yourself OR writing from the imagined doctor’s perspective, compare the versions.  Did anything change in the way you think about that moment? Did you discover any new insights or understanding?  What was it like to write from the doctor’s point of view? 

April 2, 2020: No Going Back

Published on by Sharon A. Bray, EdD4 Comments

It could happen any time, tornado,

Earthquake, Armageddon.  It could happen.

Or sunshine, love, salvation.

 

It could you know.  That’s why we wake

And look out—no guarantees

in this life…

(From “Yes,” by William Stafford, The Way It Is, 1998)

 I’ve been wondering how the Corona virus pandemic will change our lives—not just now, staying home,  social distancing, but the longer-term impact.  For many, there is or will be grief over the loss of loved ones, that a sorrow takes a long time to dissipate, if it ever completely disappears.  There is the sobering realization that no one, anywhere in the world, is immune to pandemics and other global disasters.  The longer-term impact on our economy weighs heavily in our consciousness.  How will we recover?  But the larger question, for me, is what will we have learned and  will it change in the way we act on our world, relate to others, and care about ourselves and others.  How will this change us–or will it?

You will walk toward the mirror,

closer and closer, then flow into the glass…

You learn what you are, but slowly,

a child, a woman, a man,

a self often shattered and piece

put together again till the end:

You halt, the glass opens—

A surface, an image, a past.

(“Your Life,” by William Stafford, (The Way It Is, 1998)

Several years ago, after I’d been leading expressive writing groups for cancer patients and others for a few years, my husband took a teaching position in a doctoral organizational psychology program.  For the first two years, we commuted between the Bay area and San Diego to spend time together,  but ultimately, I relocated to join him.  As a new “faculty wife,” I was introduced to some of his academic colleagues, most of whom still consulted with the private sector.  As we chatted, I found myself recalling the years I spent as an executive in a New York-based international consulting firm. His colleagues were surprised; it was a past self I had all but pushed aside, a career I no longer felt any connection with, one that had kept me running on adrenalin and stress for years.

“How did you end up writing and leading these groups?”

“Cancer,” I replied.  “Everything changed after that.”

“Would you ever consider consulting again?”

I shook my head. “Absolutely not ,” before explaining why the experience of the writing groups meant so much to me: the inspiration from patients’ who shared their experiences and lives so openly and profoundly in story and poetry,  and the extraordinary community created in the process.

“Does it pay well?” One of his colleagues asked.

“Pay?”  I think I laughed a little. Leading these groups was not a business.  It was a practice, work of the heart, and the majority of my time creating and leading programs was often volunteered, given freely–a sharp contrast to the salary I once earned as an executive.  Yet I could never imagine going back to it.  The cancer writing group work offered  a sense of meaning and authenticity my consulting work  never somehow did.  My life and my ambitions had changed in profound ways.

It’s funny how clarity happens.  An an innocent question, a paragraph in a book, an expression of kindness from a friend, or a telephone message left on the answering machine…anything can  force us to pay attention, get outside of ourselves and our complaints, take another look at the familiar reflection in the bathroom mirror and see it differently, albeit kindly.  To realize, as Wendell Berry reminds us, “there is no going back” to the self we once were.

No, no, there is no going back.
Less and less you are
that possibility you were…

That same evening, my husband and I returned home to see the message light  flashing on our answering machine.  I paused to hit “play” and listen.  It was a call from the spouse of one of the writing group members. It had been just two weeks since she had said good-bye to the writing group as they left to live in a city two hundred miles away, something she described as a decision “for closure.”  As she prepared to leave, I’d asked how she was feeling and she had responded by quoting her oncologist: “He says I’m dwindling.”  Now, listening to the message on the answering machine, I understood the full meaning of “dwindling,” and “closure.” Death and loss is among individuals in my cancer groups is sometimes happens, and while it’s painful for everyone, each person, each life lost, has touched my life in ways I never could have anticipated.  Their memories linger in the writing shared in the weeks together.

More and more you have become
those lives and deaths
that have belonged to you…

Those men and women who have let themselves be vulnerable, who write so honestly, and whose words linger in my memory long after they’ve been shared in the groups have taught me what it is to be human, to be present in the world, and to put my own life and minor complaints in perspective. It’s little wonder why I could never turn back to that old self, the woman whose spacious windowed office overlooked Park Avenue in New York.  None of that, by comparison, matters anymore.

The men and women who come to write with me, share their lives and, in some cases, death, have taught me that life is worth living, no matter what we suffer.   I am constantly humbled by their courage, the beauty and power in their stories and poems, and how they so openly share their sorrows, struggles, joys, and fears. In the sacred moments of dying, I have experienced grace.  Each person’s presence has changed me in some small way, and I am all the better for it.

 As for this post, I have struggled to write anything this week; the constant anxiety and concern that one cannot avoid has taken its toll on my motivation and ideas.  I’ve tried to minimize my anxiety and, and the same time, fend off boredom in this period of relative isolation. It is more difficult to write as I have always done–my morning quiet and solitude have disappeared as my husband awakens shortly after I do.  I am acutely aware of how very small a two-bedroom apartment has become in these past three weeks.  Instead, I have resorted to silliness at times,  turning out ridiculous rhyming poems that, at the very least, makes my husband laugh.

For solace, I’ve turned to poets and poetry, finding others’ words to express some of what I am feeling about life, suffering, gratitude, giving, finding new poems and re-reading old, much loved ones.  And quite unintentionally, I’ve even joined the thousands who have taken comfort in stress-baking!  I’ve been working on making the “perfect” scone for the past two weeks, and yesterday, I think I came close. There’s an aspect of meditation in creative activity–and I’m including baking as one of those.  Your attention is on the recipe, following, measuring, adding, kneading and checking the progress as you wait for the finished product.  It’s calming and quiet time.  Whatever helps us find activities or practices to help to quiet the mind and open the heart, are all more important now as we ride out this crisis.

I  have missed my writing groups; they are always a source of inspiration, but all my scheduled workshops had to be been cancelled.  But Gilda’s Club has asked if I’d be willing to try an online version later this month of the “Writing Through Cancer” program. I am not a fan of online groups, but I didn’t hesitate to say “yes!”   The internet, social media, all of it, does offer some positive ways to  stay connected with each other, and our social connections are more important than ever.  I’ve been routinely checking in with friends, sending cards and notes by mail, email and  notes and cards, even checking in with some health care professionals on the front line to say  “thank you,” and “how are you?”   Those efforts are  appreciated and it keeps me from succumbing to the pit of worry or anxiety so easily ignited by the constant barrage of COVID 19 reports and commentary.  This is what is important right now:  expressing my concern, love and gratitude to the people who matter to me and have made a difference in my life.  Nurturing the generosity to reach out to others at any time matters, but right now, there’s all the more reason to do it.

Now more than ever you can be
generous toward each day
that comes, young, to disappear
forever, and yet remain
uniting in the mind.
Every day you have less reason
not to give yourself away.

(“No Going Back,” by Wendell Berry, A Timbered Choir:  The Sabbath Poems, 1979 – 1997)

Suggestions for Reflection and Writing:

What does the phrase, “you can be generous toward each day/ that comes” mean for you?

We all experience difficulties and challenges out of our control, times that are painful and difficult.  But what do we learn from them?  Think of difficult chapters in life you’ve already experienced.  What did they teach you?  What lessons do you want to take from this pandemic experience?

In this world where we are all  experiencing how our lives can change in an instant, what have you learned about yourself in this uncommon time?  What matters most?

 

January 11, 2020: The Necessity of Revision

Published on by Sharon A. Bray, EdD4 Comments

Half my life is an act of revision.  –John Irving

Irving wasn’t just talking about writing; I think he was talking about life.  While revision is an integral part of the writing process, as any writer will tell you,  it can be a difficult and frustrating process.  Writing demands it, but so does life.

“Revision” has been part of our vocabulary for a very long time.  It was originally borrowed from the French revision (1611) and derived from the Latin, “revīsere, meaning “to look, or see, again.” Consult a thesaurus for synonyms of “revise,” you’ll find words like reexamine, reassess, rethink, alter, modify and change.   Obviously, it’s not just a word that applies to the writer’s work.  Revision is the process we undertake whenever we try to make sense out of something that has happened to us–job loss, relationship break-up, loss of a loved one or being diagnosed with a serious illness like cancer.  Understanding or sense-making requires a process of revision, of seeing something anew or in a different light.

In part, revision is about letting go, acknowledging choices and changes we must make as our lives change.  The men and women who write with me are forced, because of their cancer diagnoses,  to confront mortality no matter their age, something that requires an entirely different way of thinking about of one’s life.  The hard reality of any debilitating or terminal illness is that it alters lives without warning.

Yet living means that things happen to us—good things and terrible things—on a daily basis.    It’s the constant creation and changing of our life stories. We turn to a new page each day.  What we planned may suddenly change; we make choices that influence future events and their outcomes; others’ lives and events also affect us.  Despite that, the story closest to us, our own, is sometimes the most difficult to understand. That’s when we have the opportunity for revision and seeing life in new and different ways.  That’s why I like poet Naomi Shihab Nye’s description of revision as “a beautiful word of hope…a new vision of something.”

In a 1993 interview in the Paris Review, the poet William Stafford was asked why he’d chosen the title, You Must Revise Your Life (1967) for one of his few books of prose.  He explained it by saying,

 “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… A workshop may seem, to those who take part in it, a chance to revise the work they bring. I think it’s a chance to see how your life can be changed…”

Revision isn’t just about writing; it is a life process.  Every day, life hands you new material—and not all of it welcome.  It offers you the opportunity to change your life.  Each day, each year, you “talk back” to life, ask questions, try to understand, and try to make sense of what has happened to you, just as a writer ponders, even struggles, with a manuscript or a poem.  Revision, as Stafford said, offers you an opportunity to see your life in a new light.

Let’s face it, clinging to a past that no longer applies to your present only seeds depression or regret.  Letting go of those worn out parts of your old life is a necessary process—a life long process.  But revision is not just about letting go.  It’s also about deciding what to keep and what to discard as you continue to shape and re-shape your life at every stage.  In that way, it’s not unlike what writers and artists do:  letting the material of the poetry or narrative, the sculpture or painting talk back, helping them to see things anew and creating something better.  Revising one’s life involves embracing whatever happens—in things, in language and in life.  “The language changes,” Stafford wrote, and “you change; the light changes…Dawn comes, and it comes for all, but not on demand.”

So to you, Friend, I confide my secret:

to be a discoverer you hold close whatever

you find, and after a while you decide

what it is.  Then, secure in where you have been,

you turn to the open sea and let go.

(From: “Security,” by William Stafford, in Passwords, 1991.

 

Writing Suggestions:

  • When have you had to let the material of your life talk back to you?  What changed?  What did you discard?  What did you retain?
  • Write about how you’ve had to revise your life when the unexpected has occurred, for example, loss of a loved one, a cancer diagnosis, marriage, having children, or any new project.  How did these events prompted you to revise your life?
  • If you keep a notebook, return to an earlier time, like something written soon after your diagnosis or during the upheaval of another difficult experience. Try these steps:   first, re-read what you wrote, highlighting the phrases that or words that stand out for you.  Then, re-write the event, but try beginning with and focusing on the phrases you’ve highlighted. “Work” with your material.  Let it talk back to you as you recall the details of that event—sounds, smells, the quality of light, words said, what you were feeling.  Rewrite and then compare the two versions.    What changed?  What did you see differently as a result of revision?