September 22, 2021: Our Stories: Our Legacies

“Death steals everything but our stories.” – Jim Harrison (“Larson’s Holstein Bull”)

She was first diagnosed with metastatic cancer in 2014, but N., one of my former writing group members recently died after a valiant struggle less than two months ago.   Her struggle was a valiant one amidst considerable odds, but she began, in the months after her diagnosis, collecting poems and quotations that, as she put it, “uplifted me.”  A year or so later, N. joined one of my “Writing through Cancer” workshops.  She. embraced the expressive writing approach and continued to explore and deepen her writing, studying with author Natalie Goldberg and poetry with haiku masters.  She also a two year study of teacher training in mindfulness meditation training with Jack Kornfield, even as she was weakening and hospitalized for infections.  In short, N. was a person a who inspired not only me, but many of the people who knew her.

I believe the greatest teachers in my life have been the men and women in my writing groups, like Nan, who have shared their experiences of living with metastatic cancer over the years.   While I have mourned their deaths, even years later, their memories are vivid in my mind.  The writing they shared was as powerful as any found in published memoirs and poetry collections—even more so for me, for they are the living legacies of who they were, what they experienced and what they endured.

“I will tell you something about stories.  They aren’t just entertainment.  They are all we have to fight off illness and death.  You don’t have anything if you don’t have stories.  (Leslie Silko, Ceremony)

N. was such an inspiration.  She was, I knew, intent on writing a book before she died.  We had exchanged emails about the possibilities—and challenges—a year before her death.  Her plans crystallized in Spring of this year:  it would be a book to give to her partner, family, close friends, and teachers before she passed.  And, at the end of July, I was delighted to receive her gift of the book in the mail.  Entitled Legacy of Love:  Gifts I Received on the Path of Life, it is a beautiful book:  professionally bound, illustrated with her partner’s nature photographs, and filled with the reminiscences, stories and learnings from her life and cancer experience.  Quotations, meditations, prayers, and poetry that she found meaningful are interspersed among the stories of her life’s journey.  Writing prompts she’d experienced in the writing groups and other workshops are followed with her written reflections and haiku. 

It was a deeply moving experience for me to read N.’s book; I lingered over the pages, remembering her presence, the enduring love and support of her partner she’d often written about, and her deeply moving prose.  I immediately wrote to her, expressing my gratitude for such an intimate gift of her life.  In the weeks that followed, I returned to it again and again—and a week or so ago, I was moved to write her again to express my gratitude.  But unlike before, I heard nothing in return from N.  I contacted her partner and learned she had died, apparently within a day or two just after I had received her book.  My sorrow was softened because I felt Nan’s presence so vividly between its pages.

My story is myself: and I am my story. This is all you will know of me; it is all I will know of you. This is all that will survive us: the stories of who we are. — Christina Baldwin, Story Catcher

Her death saddened me, yes, as the deaths of others have who have been part of my writing groups.  Yet I was reminded again of how fortunate I am to witness and experience the many gifts of poetry and stories written and shared in the workshops I have led for so many years.  I still hear their voices and remember their faces as I read and re-read some of their stories or poems—ones that frequently took my breath away with its power and depth, ones that still bring tears to my eyes with its honesty and poignancy, writing that was lyrical, poetic, profound—the stories of their illness experiences, of their lives.  Writing I have wished more than once could have been shared with their doctors to illuminate the patients’medical experiences:  the good, the difficult, and the sometimes cold and impersonal.

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 important to the medical experience, thanks to the work of Rita Charon, who created the term, “narrative medicine,” a medical practice that uses patient stories in clinical practice, research, and education as a way to promote healing.  Storytelling, as several researchers suggest, is a powerful tool for patients and healthcare providers alike.  It provides the patients with a way to give voice to the experience of illness and, in turn, to begin to confront their illness, questions of care and mortality. 

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.2,3… stories keep us connected to each other; they reassure us that we are not alone.Miriam Divinsky, MD, Can Fam Physician. 2007 Feb; 53(2): 203–205.

Illness, unexpected tragedy or hardship may be the triggering event in our lives that ignites the desire to write, but what I experience with every writing group in the weeks together, is that other stories begin to be written — stories of love, loss, family, childhood, life’s joys and sorrows.  These are the stories of the experiences that make us unique, that make us human.  Writing and telling our stories offer a way to understand and make sense our lives.  In sharing them, our lives are affirmed, our legacies articulated.   Our stories say: “This is my life.  This is what I have experienced.  This is important to me.  It is what has shaped me into the person I am.” 

But 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

As I write now, I instinctively reach out and touch N.’s book—her stories and poetry; her life captured in its pages, her willingness to look death in the face, to ask herself the hard questions, to give us glimpses of what she suffered, feared, learned and loved and ultimately how she prepared herself for death, just as others faced with the prospect of mortality have written and expressed, sharing their lives, their fears and courage, so honestly and poignantly.  It is an extraordinary gift, a way to remember, a gift from the heart.

Poetry, stories:  it’s what I carry with me…and, I hope, what I can leave behind to say, “This was my life.  This is what mattered to me.”  (N., 2021)

Writing Suggestions:

  • What are the stories you want to tell?  The ones about you, your life, what matters most?
  • Has your illness broken you open?  Offered new insights or ways of seeing your situation?
  • What has had the most impact on your life?  Try this three part exploration:
    • Who were you?  (Look to your past)
    • Who are you now?
    • Who are you becoming? (What are you learning about yourself now?)
  • Use a line from a poem, essay or story that you love.  Begin with that line and then keep writing—wherever it takes you.  Here are a few you might try:
    • “Starting here, what do you want to remember?”
    • “Before you know what kindness is, you must lose things…”
    • “It is in the small things we see it.”
    • “Let the hard things in life break you.”
    • “I am falling in love with my imperfections.”
    • “But my heart is always propped up in a field on its tripod…”

August 31, 2021: I Guess That’s Why I Called It the Greys

Everywhere in North America, children are heading back to school…only it’s not with quite the same unabated enthusiasm for many youngsters and their parents.  COVID, despite the many months of lockdowns, social isolation and available vaccinations, hasn’t finished with us, as the Delta variant and climbing case numbers demonstrate.   Since my three grandchildren are beginning another school year, I can’t help but wonder about the spread of the virus among schoolchildren who have not, as yet, been eligible for vaccinations. 

That low level anxiety lingers–all too frequent a visitor in my life during the past year and a half. While my husband and I enjoyed some of the gradual opening up of restaurants, galleries, and stores during the summer months, we also remained cautious.  Then the dog days of August descended with haze, heat and oppressive humidity. That, coupled with the daily reports of drought and wild fires around the world, put the reality of advancing climate change into sharper focus, and coupled with the rise in COVID cases, my anxiety rose.  The blistering heat forced me back indoors, which was all too reminiscent of the months of lockdown.  Days dragged, headlines screamed disaster, and my spirits took a nose dive.

Mornings, which are my quiet time for writing, offered little relief.  For many days, my notebook pages contained more white space than words.  I couldn’t seem to get inspired, unable write through my monumental case of sagging spirits.  The days seemed cast in muted, colorless tones. And worse, when I looked at myself in the mirror, my image reflected back seemed dull and grey, just like my mood. I remarked to a friend, “In these times, grey has become a primary color.”

That one spontaneous sentence, and the next day, my associations with “grey” came out of hiding.  I recalled Mordecai Richler’s wonderful children’s book, Jacob Two-Two Meets the Hooded Fang, published in 1975, read and re-read to my young daughters.   Jacob, is a  young boy in a large family who has to repeat everything twice just to be heard, which results in his nickname, Jacob Two-Two. His habit is also the reason he is misunderstood and considered rude. All of it results in his being punished and sent to the children’s prison,  “Slimer’s Isle,” which is run by the Hooded Fang.  Slimer’s Isle is a place where captive children like Jacob never see the sun.  The image of that sun-less place seemed a perfect description for the grey mood that had lingered in my psyche for months. 

Yet Remembering Jacob Two-Two and Slimer’s Isle was also an inspirational nudge.  It was enough to inspire me to a fruitful morning writing, and this time, the words came.  I had fun tinkering with the song lyrics of  “I guess that’s why they call it the blues,” substituting the color grey and adding a few lines about COVID in my version. While it’s hardy ready for public consumption, my husband and I had a laugh over my attempt at song lyrics.   A day or two later, time spent with my granddaughter led me to the old memory of the Crayola Box of 64 colors—an item which accompanied every “back to school” bag during my childhood.   Grey was my most unused color in the box, but thinking of it transported me to the memory of  a delightful poem about color written by a medical student in a writing workshop I led for faculty and students of Stanford Medical School in 2015.

I used color as a writing prompt.  To get people inspired, I spread out a handful of paint color chips on a table.  Not only are a full range of colors represented in the interior paint chips , but they have somewhat exotic—one might even say “silly”—names, such as “first light,” “little princess,” “dinner party,” “head over heels,” “windmill wings”…  Whether using the color or the names associated with them, participants had great fun working them into poems and stories.  But one med school writer’s poem stood out above all the others.  She had chosen the least popular color of the lot:  grey, labeled “hickory smoke.”  When she volunteered to read aloud, we were in awe of how she’d brought that mundane color to life.   Here is an excerpt of her poem, simply titled “Grey”:

…“Air with dirt,” they say.

Floating soot clamoring cold and unwanted

against a clean white wall…

…Grey is the color of “yes, life has been here,”

and “don’t you know I have a story to tell?”

Grey is the sidewalk that’s been walked,

the white house that’s been lived in…

White is before, but give me the after

Give me the ninety-year-old under her old grey comforter.

Has she lived? Well, tell me the color of her soul.

Show me the spots of grey, and tell me how you’ve lived,

the story printed dark and true in the deepest, most imperfect,

ugliest and sweetest shade.

–Workshop Participant, 2015

It’s probably no surprise that after re-reading her poem again, my grey mood had begun to dissipate.  Since then, I’ve pulled my ancient and well-worn copy of Jacob Two-Two from the shelf to recall his experiences on Slimer’s Isle, how he won over the Hooded Fang and returned to his family a hero.  I suppose that all the little memories of grey served as a reminder that while life has been difficult, and despite Zoom, lonely at times, it’s within my control to find ways to navigate this rather strange “new normal”  with a more positive outlook.  Even in the greyest of times, it seems we can find new insights, ideas, perspectives.  School is starting for my grandchildren, my teaching daughters, and even for me, beginning new series of writing workshops for cancer and heart patients.  This is activity I truly look forward to, and I am particularly grateful that despite these months of lockdown and isolation, I can be engaged in meaningful ways.  While my mirror doesn’t lie—I am getting grayer–but that would have happened even without COVID! So grey hair or not, I’m engaged in ways that matter to me.  And that’s  how I want to live.

 “Show me the spots of grey, and tell me how you’ve lived…”

WRITING SUGGESTIONS

.  How have you navigated the long months of COVID isolation?  What kept you going?

.  Did you experience “the greys?”  or “the blues?”  What helped you through those less positive moods?

.  Pull up a color wheel on the web—or open a box of 64 colored crayons.  Choose a color, any color. Make a list of what comes to mind for just 3 minutes.  Read it over, then choose one thing from your list and write for 15 minutes.  Try playing with a narrative or a poem that uses that color in it.

.  Did COVID help you gain clarity about what matters most in your life?  Write about the lessons from lockdown.

.  Back to school.  What memories do you have from your childhood about a new school year beginning?

Regaining Your Voice: Writing Cancer

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

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? 

August 15, 2020: The Comfort Found in Books

I’ve been thinking about how much our daily lives have changed as the COVID lockdowns continue here.  More than that, I think about  what it is that keeps us putting one foot in front of the other on a daily basis, how the small daily routines or household tasks keep me going, providing a sense of normality to our lives even though this prolonged period of social distancing and relative isolation continues without any sure end in sight.  I’m not alone in fending off boredom, feelings of malaise or that constant low-level anxiety that is part of the uncertainly of this strange and isolating time.  Heart failure puts me in a higher risk category for contracting COVID just as those of you living with cancer, undergoing treatment and continuing recovery, and in many cases, your diagnoses pre-dating the onset and rapid spread of the current pandemic.

Not surprisingly, the title of a recent article got my attention: “It has been easier to cope with my cancer during lockdown”  British author Susie Steiner wrote in a recent issue of The Guardian/Books.   In treatment of a brain tumor, she opened her article saying “I wrote my latest novel…with a 9cm tumor pushing my brain over its midline.  But I didn’t know about it.”  Even more ironically, Steiner wrote, “…I was plotting a cancer storyline, not yet knowing that I had cancer.”

“So much of the experience of cancer is the waiting rooms,” Steiner said, “is the hard chairs, the inequality between patients and medical staff—you feel so vulnerable in your elasticated slacks with your terrible hair…waiting for them, terrified, in the Room of Bad News.”  Yet she writes that it has been easier for her to cope with her cancer during lockdown knowing she was not the only one whose life was on hold nor fearful of contracting the virus and possibly dying.

Cold comfort perhaps, but like cancer, we’re all in a kind of waiting game, in limbo, taking greater precautions, dumping the plans we might have had for travel or evenings socializing with friends, amassing a supply of face masks to last however long this pandemic continues to spread.  She quoted Christopher Hutchins, author of Mortality, a collection of essays about his struggle with esophageal cancer.  He described cancer as “stasis… a  bit like lockdown, you spend your time in treatment, saying to yourself, “I just have to get through this, then I’ll get my life back.”

Nevertheless, Steiner writes “it has been easier, weirdly, to cope with my illness during lockdown, because I’m not the only one whose life is on hold, not the only one terrified of dying…”   What has comforted her—and what I find I have also found invaluable–are books.  “One thing you can do a lot of when you’re a patient,” she remarks, “is reading.”

The idea that reading for healing, like writing, is not new. Jenni Odgen, PhD, writing in Psychology Today, notes that Sigmund Freud was known to incorporate literature into his psychoanalytic practice in the late 1800’s, and even King Ramses II of Egypt was known to use reading for healing,  keeping a special chamber for his books with the words “House of Healing for the Soul” above the door.  The term “bibliotherapy,” the art of using books to help people solve personal issues, was first used in 1916.  It now takes many different forms, including literature courses for prison inmates to reading groups for elders suffering from dementia (“Can Reading Make You Happier?” by Ceridwen Dovey, New Yorker, June 9, 2015) .  In fact, two or three years ago, I stumbled onto The Novel Cure, written and published by two bibliotherapists, Ella Berthoud and Susan Elderkin in 2017.  Written something like a medical dictionary, it matches ailments and illnesses with suggested reading “cures,” including having cancer and caring for someone with it.

Reading, whether for pleasure, information or healing, helps us to navigate periods of isolation, boredom, and worry.  Dovey cites research that demonstrates how reading puts our brains into a state similar to meditation, bringing the same benefits of deep relaxation and inner calm.  Regular readers, she notes, sleep better, have lower stress levels, higher self-esteem and lower rates of depression than non-readers.  Quoting the author Jeannette Winterson, she adds, “fiction and poetry are doses, medicines…what they heal is the rupture reality makes on imagination.”

My husband and I have also been devouring books for the past many weeks.  He’s gone from a diet of current affairs and research psychology to poetry; I’ve added several non-fiction books, especially biographies of artists and writers, to my own regular stash of novels. Books are as comforting to us even now as they were when we were children, sneaking our books to bed and reading with a flashlight under the covers, learning about others and the world beyond the borders of our small towns.  In this time of COVID, books—poetry, fiction, nonfiction—have been indispensable to ignite our imagination, interest and combat the boredom on those days when our moods can turn as grey as a dull overcast day.

Susie Steiner, in her article for The Guardian, describes how her reading changed during the course of her cancer treatment, and why she turned to books written by other cancer survivors.   She was hungry, she said,  for what she called “fellow feeling.” Living like this is gruelling,” she wrote, “ we need imaginative empathy in fiction to help us through it.”

This is surely the … therapeutic power of literature – it doesn’t just echo our own experience, recognise, vindicate and validate it – it takes us places we hadn’t imagined but which, once seen, we never forget. When literature is working – the right words in the right place – it offers an orderliness which can shore up readers against the disorder, or lack of control, that afflicts them.—Blake Morrison, “The Reading Cure,” The Guardian/Books/ January 5, 2008.

 

Writing Suggestions:

  • What is helping you get through this time?
  • Whether you are actively dealing with cancer or well into recovery, have you found comfort or inspiration from any books?
  •  Have you learned anything new or helpful about navigating the ups and downs of cancer?
  • What books—any genre—would you recommend to others?  And why?

 

August 3, 2020: COVID: A Time for Reflection

(Illustration by Maurice Sendak, From:  Open House for Butterflies by Ruth Krause)

Starting here, what do you want to remember?
How sunlight creeps along a shining floor?
What scent of old wood hovers, what softened
sound from outside fills the air?…

For the month of July, I took a month-long hiatus from writing my blogs–something I haven’t done in the 14 years since I first began my “Writing Through Cancer” blog.  But in this unusual time created by COVID, I felt the need to break from my self-imposed schedule of posting and instead, have the freedom to let my mind—and my pen—wander where they would.  It was a necessary period to simply reflect and be, in the sense of writing, quiet for a time.

I kept my daily writing routine—a habit indispensable to my day.  Some days my notebook pages were half empty, as though my muse had gone into hiding; on other days inspiration would strike, playful, serious, or lead me into a re-examination of past writing—it hardly mattered.  I simply let whatever emerged on the page, be.  I began re-reading pages and pages of old posts, books of poetry, and others about writers and writing.  I questioned whether to continue my blogs or to let them gradually fade away from inactivity. I questioned the writing of separate posts for cancer and heart failure as I’d initially done.  The two had already begun to converge in recent weeks, and not surprisingly.  Writing about serious illness, trauma or suffering is less about the illness itself and more about the human experience.  It is writing about life.

The upending of what was normal, months of social isolation, social distancing, closures, and virtual everything has been sobering.  During the early months of COVID, I had celebrated another birthday, less welcomed this year as my birthdays before COVID and when I was much younger.  My past birthdays signaled a new year, one that held promise, opportunity, new plans and dreams, while this most recent one was punctuated with questions:  How long will this continue?  Will my life be shortened by this virus?  What will the coming year hold for all of us?

Of course, there were always some years I was happy to bid farewell–ones marked by personal tragedy, loss and illness–but even then, the passing of another year signaled the possibility for something better.  Looking back, I realize that my “crosshairs” were firmly set on what Wallace Stegner once described as “the snow peaks of a vision” in his Pulitzer Prize novel, Angle of Repose, (1971).   I was always looking ahead to the “what’s next? “What’s possible?”   Before COVID, I still had that “looking ahead,” the hope, possibilities of something “new” to look forward to, a new goal to achieve, a trip to another country, some “better thoughts” that might turn into something significant on the page.   COVID, like cancer and heart failure temporarily did, foisted a “hold” on those future possibilities, and the longer our lockdowns and restrictions have continued, the more I realize we—all of us– are unlikely to return to the same world we knew—and took for granted—just six months ago.  What, then, I wondered, do we look forward to now?

Will you ever bring a better gift for the world
than the breathing respect that you carry
wherever you go right now? Are you waiting
for time to show you some better thoughts?

The little respite from the blogs that  I granted myself has helped me realize that this strange and unusual time has given me a chance to look back, reflect and have gratitude for the life I’ve been fortunate enough to live thus far, even if I sometimes regret I haven’t accomplished all I set out to do.  It’s also helped me clarify what matters most to me and how and where I want to expend my energies as life moves forward.

I am more aware than ever of the fragility and uncertainty of life.  I take nothing for granted.  My brushes with cancer and heart failure, the experiences of the men and women who write with me from the experience of life-threatening and terminal illness continue to remind me how precious life is and yet more, how challenging and difficult it can also be at times.  None of us is immune from illness or hardship. No one escapes.  Cancer, heart failure, a pandemic of COVID:  serious illnesses remove any pretense or assumptions about ourselves we may have—a time, perhaps, when we need to pause and reflect, gain insight and discover so much more of who we are and have the potential to be.   Maybe that’s one important lesson I will take from this time of pandemic—and use it to continue to inform how I want to live and engage with others.

When you turn around, starting here, lift this
new glimpse that you found; carry into evening
all that you want from this day. This interval you spent
reading or hearing this, keep it for life –

From: “You Reading This, Be Ready,” by William Stafford)

Writing Suggestions

  • What has been your COVID experience? Write about the concerns, reflections or insights about life as you’ve known it—and how it may change.
  • Do you agree or disagree: “Writing about serious illness is really writing about life.” Why or why not?
  • What new glimpse of life and living have you discovered out of hardship or serious illness?
  • Begin with the line, “Starting here, what do I want to remember?” and keep writing for ten minutes.  Re-read.  What stands out?

 

 

For April 13, 2020: Spiritual Nourishment in Difficult Times

I cannot tell you
how the light comes,
but that it does.
That it will…

(“How the Light Comes,” by Jan Richardson, in Ten Poems for Difficult Times, 2018)

A note from Sharon:  To those of you reading this post:  It is difficult to find the words that capture this extraordinary time we are now experiencing—no one has been immune to the crises triggered by this world pandemic, and for the foreseeable future, our lives will continue to be affected, our daily habits changed, by the impact of the corona virus.  It is a worrisome time—and for any of us who are in the “higher risk” categories, it is difficult to escape the underlying anxiety that seems to invade one’s daily life.  What gives us solace?  Offers hope? A few years ago, I wrote this blog post which follows, reflecting on the importance of our spiritual lives.  Whatever that life involves, it’s certain that Life’s hardships thrust us into what can only be defined as a deeply spiritual journey.  As we all deal with the impact of the corona virus on our lives, our loved ones, and how our lives will be change because of it, I offer this week’s post, originally published in the early part of 2014. 

._ . _ . _ . _

A few years ago, when I was living in San Diego, I participated in a workshop on contemplative practices that could enrich our lives.  My part in it was to invite the participants to consider the spiritual practice inherent in writing.  Like so many Americans, I’ve been a lapsed church-goer for the better part of my adult life, finding I craved a deeper spiritual practice to sustain my daily life than the Sunday morning services.   I had dabbled with other religious traditions, tried to learn meditation, but still, I couldn’t make anything work for me.  What I hadn’t realized is that I had already had the tools to deepen my spiritual life—writing.  I had always written, and during the years of a soul shattering time in early adulthood, writing was a refuge, my port in the storm, a virtual sanctuary.  I just hadn’t thought of it as having the potential become my regular spiritual practice.

Within a year after returning to California from Toronto,  I was confronted  with the first of a series of losses and unexpected life changes beginning with my father’s death from lung cancer, and followed by mother’s descent into Alzheimer’s, the onerous and painful  task of downsizing a dying nonprofit, an unexpected diagnosis of early stage breast cancer, and my mother’s death.  In the aftermath of my first husband’s drowning a decade earlier, writing had become a refuge, a lifesaver I clung to through those turbulent times.  Writing not only helped me cope, but ultimately, became an important daily routine.  As my writing practice solidified and deepened, it became a fundamental part of my spiritual life.

My writing grew to become a daily ritual and meditation, something I practiced early each morning before the outside world intervened to pull me into its noisy demands.  Its place in my spiritual life has only solidified over the years; it is a regular practice that begins in the stillness of early morning when I first open the pages of my notebook, the same leather-bound journal I’ve written in for years.  Like the dawn of each new day, a new page awaits, blank and inviting—reminding me now, as I write, of Rita Dove’s words in her poem, “Dawn Revisited:” the whole sky is yours/ to write on, blown open/ to a blank page…”   I have no agenda when I first begin writing, no expectation. I begin with one small observation, something I notice in the present moment—the fog lifting from the canyon floor, a trio of hummingbirds at the garden fountain, the red-tailed hawk’s wings spread as he glides just beyond our deck—whatever captures my attention.  Sometimes, a haiku poem emerges; other times, what I describe is enough to trigger a memory or a feeling that begs to be written.  It hardly matters.  What matters is that I write, embracing the solitude of the morning, intertwining the external world with my internal one, going deeper into whatever I’m exploring on the page, writing myself into “knowing.”

Writing is my meditation and my prayer.  It opens me, ensures I am “paying attention” to what is before me, what is inside me. It informs my intentions for each day and ultimately, the work I do with others, helping them express and explore the material of their lives in writing.  While writing might become become a spiritual practice for anyone, as it is for me, so can art, music, dance, yoga, T’ai Chi, meditation, and prayer—anything that takes us into the quiet contemplation and deeper parts of ourselves.  As Thomas Merton wrote, “Art enables us to find ourselves and and lose ourselves at the same time.”

One’s spirituality is not dependent on a specific religious belief or theology.  We all have spiritual needs and yearnings.  What matters is that we find a way to nurture them, that we feed our souls as well as our bodies and minds.  In times of hardship, life-threatening illness, or other suffering, it’s often our spiritual lives that keep us from losing hope, that keep us whole.  As New York Times editor, Dana Jennings, diagnosed with an aggressive prostate cancer, wrote in his blog, “One Man’s Cancer,” our spiritual lives sustain us through life’s most challenging chapters:

I am not a fool. I am a patient with Stage T3B cancer and a Gleason score of 9. I need the skills and the insights of the nurses and doctors who care for me. But they don’t treat the whole man. Medicine cares about physical outcomes, not the soul. I also need — even crave — the spiritual antibodies of prayer, song and sacred study.

A cancer diagnosis is not something any of us want.  It can feel like a death sentence, and it may challenge your faith,  casting doubt on all that you believed was right and true.  But while cancer—and many other painful experiences– may seem like a dark night of the soul and challenge your faith,  it may also offer you the chance to explore your spirituality,  deepening your self-understanding and compassion for others.  It’s something I witness again and again in the expressive writing groups I lead:  a time to explore and deepen one’s understanding and compassion, an opportunity to define what is essential and important in life, and gratitude and appreciation for the ordinary gifts in each day we have.  As one cancer survivor wrote, “The community I am building with my fellow writers …is… a form of spirituality.”

Through the exchange of stories, we help heal each other’s spirits…Isn’t this what a spiritual life is about?–Patrice Vecchione, Writing and the Spiritual Life

Life’s hardships thrust us into what can only be defined as a deeply spiritual journey.  We may kick and scream, rail against the injustices of those events, but like it or not, we’re forced to re-examine our lives in ways we have not, perhaps, done before.  We begin to pay attention, really pay attention, to what truly matters to us—and to our lives.

“At a certain point you say to the woods, to the sea, to the mountains, the world~ now I am ready. Now I will stop and be wholly attentive. You empty yourself and wait, listening.– Annie Dillard, Teaching a Stone to Talk, 1982.

Varda, who wrote with me for the last two years of her life, died of metastatic breast cancer several years ago.  She wrote honestly about her cancer experience, her fears and her hopes, sometimes poignantly, sometimes humorously, but always honestly, voicing, so many times, what others were afraid to express.  Near the final weeks of her life, she wrote a poem entitled “Faith,” that described her spiritual re-examination during her cancer treatment:

…My cancer has challenged my faith,

and I have found an incredible well I did not know I had. 

I have found true surrender,

 enormous peace.

I have come home to God, and we have renewed

our friendship.

(From:  “Faith,” by Varda Nowack Goldstein, in A Healing Journey:  Writing Together Through Breast Cancer, 2004).

Varda was thrust into a journey that can bring anyone to their knees, but her honesty, her willingness to plumb the deepest parts of her experience and write so honestly about her life, cancer and faith were humbling and inspiration to us all.   Her stories were, I’m certain, strengthening her “spiritual antibodies”—not a cure, but courage to face and, not unimportantly, help loved ones face her inevitable death with grace, love, and even shared laughter.  Surely this was evidence and testimony to the depth and importance of Varda’s spiritual life, and something, whatever form it takes, we all need to navigate difficult and challenging times.

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,” by Wendell Berry, The Selected Poems of Wendell Berry, 1999)

Writing Suggestions:

  • Reflect on what nourishes your spiritual life.
  • What practices or rituals have helped sustain you during cancer, other hardships, losses or struggle?
  • Where have you found your solace, your strength, your source of “spiritual antibodies?”
  • In this time of the corona virus pandemic, write about the spiritual practices most important to you.

What You Really Want to Say: The Unsent Letter

Cancer:

You entered my life without my permission. You tried to turn my body against me, leaving pain and uncertainty in your wake…  Because of you I wondered if I would see my children grow up… You made me feel like less of a woman …You took my hair and scarred my body. You made me cringe at my own reflection in the mirror. Others see a warrior. I see someone wounded – broken by the battle…(2013 “Writing Through Cancer” workshop participant)

Writing during any difficult life circumstance can help you feel better.  When you write, it’s a chance to dive beneath the water line and express the troublesome or difficult emotions that come with upsetting periods in your life.  It offers you the freedom to pour out your feelings on the page, helping to relieve or lessen stress—often a culprit in illness and other health problems.

The most healing kind of writing is honest; writing that openly acknowledges your emotions.  Your ability to feel and name positive and negative emotions is critical to healing.  Sometimes though, when what you may feel is tough to acknowledge.  You might be reluctant to be honest on the page, particularly when what you want really want to say might feel like a confessional: conflicted or strong  feelings about events or others you’ve never fully expressed.

Psychologist James Pennebaker explained it this way:  writing honestly and openly about how you feel can be a bit like the experience of seeing a sad movie.  You come out of the theatre feeling bad; maybe you even cried during the film.  But you’re wiser.  You understand the character’s issues and struggles in a way, perhaps that you didn’t when the movie began.  It is in the expression of those feelings of sorrow or anger that you are able to stand back, re-read and examine what you’ve written.  That’s often when you begin to understand the sources of your pain or anger better than you might have before.  There is relief in that realization, and with it, the possibility for greater insight..

Writing offers us the opportunity to “think to” another, whether it is yourself, your body, or someone with whom you have unresolved issues.  Imagining another and addressing your writing to that person encourages you to write naturally.  Even if you never show it or send it to anyone, writing to an imagined other has the effect of making your words more powerfully felt. What’s more, you can say what you really want to say.

In poetic terms, there’s a figure of speech called an “apostrophe,” in which someone absent or dead, or even an object or abstract idea, is addressed directly.  Examples can be found in Walt Whitman’s poem to the dead Abraham Lincoln, “O Captain! My Captain!,” in Edna St. Vincent Millay’s poem, “God’s World,” which begins “O World, I cannot hold thee close enough…” or Kenneth Koch’s “To My Heart as I Go Along.”

Unsent letters are a more common form of saying what we really want to say.  Whether during cancer or at other challenging times in our lives, all of us may experience the need to release the unspoken, to cleanse or reach out to another, whether living or dead, person or thing.  An unsent letter can be a tool to help express difficult or complicated feelings that might otherwise might never be expressed or fully understood.

President Abraham Lincoln often resorted to what he called “a hot letter,” piling all his anger into a note, then put it aside until his emotions had calmed down, labeling the letter “Never sent. Never signed” (New York Times, 2014),

In “Letter, Much Too Late,” Pulitzer Prize winning author Wallace Stegner addressed his dead mother.  Stegner was close to his mother, who always tried to protect him from his father, even though she was rendered helpless in the face of her husband’s abusive personality.  While he was a graduate student, Stegner’s mother died from breast cancer.  He nursed her in her final days and sat at her side as she took her last breath. “Letter, Much Too Late” was written fifty-five years after her death.   In it, he remembers her, asks for forgiveness and remembers her as a mother with enduring love for her son.  He writes:

 “In the more than fifty years I have been writing books and stories, I have tried several times to do you justice, and have never been satisfied with what I did. . . .I am afraid I let your selfish and violent husband, my father, steal the scene from you and push you into the background in the novels as he did in life. Somehow I should have been able to say how strong and resilient you were, what a patient and abiding and bonding force, the softness that proved in the long run stronger than what it seemed to yield to.” (In:  Where the Bluebird Sings to the Lemonade Springs, by Wallace Stegner, 1992)

I have used the “unsent letter” exercise many times in my workshops, but one time in particular stands out.  A few years ago, G., who had only just received the news earlier that week that her cancer had spread and was terminal, used the unsent letter exercise to write to her doctor, who had cared for her throughout her ten-year journey with metastatic breast cancer. She shared her the letter she’d written aloud with the group.  It was strong and beautifully written, acknowledging how hurt and alone she’d felt when her doctor couldn’t even look her in the eyes as he conveyed what amounted to a certain death sentence.  After she read her letter aloud, several group members had tears in their eyes.  G. did too, but she said, “I feel better now.  It’s helped just to write down what I felt, even if I’m not going to send it to him.”

That’s the beauty of the form of the unsent letter.  It allows you to express difficult emotions on paper, safely, and release them from your mind and body.  Once you’ve written such a letter, it’s good to set it aside, then a day or two later, re-read it, noting what stands out.  It’s a way of learning from what you’ve written—gaining new insights, greater clarity or understanding—all without the need or risk of sending it to the person to whom we’ve written. Yet, in G.’s case, she took her unsent letter one step further.

At the next group meeting, we all noticed how smiling and radiant she appeared, and once we were seated, she told us she had taken her “unsent” letter to her follow-up appointment and read it aloud to her doctor.  It was a real act of courage, but happily, it resulted in positive exchange between her doctor and her.  She described how visibly moved he was after she finished reading, and then admitting that he had struggled to tell her the results of her tests—the news no one wants to hear.  He admitted he did not trust himself to keep his composure when he gave conveyed the latest test results.  He apologized to G. and thanked her for having sharing her letter with him.  It had proved to be a healing moment between doctor and patient, restoring the trust and understanding between them.

Writing Suggestion:

  • Try writing an unsent letter to someone or something.  You might write to a loved one, a physician, a higher power, your body or even cancer.  Write with the assurance that you can say what is honestly in your heart and mind, that no one ever needs to see or hear what you have written.  What do you really want to say?
  • Once you’ve written your letter, put it aside for a day or two.  Then re-read it.  Underline what stands out most for you.  Have your feelings changed in any way?  What insights have you gained?