November 8, 2021: Using Metaphors in the Medical Experience

Poetry and medicine share a long history, something for which we can thank Apollo, the Greek god responsible for both healing and poetry.  If you had any idea that metaphors are only the creativity of poets and poetic imagination, think again.  Metaphors are common and pervasive in our everyday lives, influencing the way we think and act.  Metaphors, which compare two seemingly unrelated things, are not only common in poetry and everyday life, but also in medicine.  (Lakoff & Johnson, Metaphors We Live By, 1980).

Consider the sports talk that dominates the televised football or hockey seasons.  Sports metaphors are commonly used to describe experiences in our daily lives, for example, in companies, where employees are encouraged to be team players” or “run with a good idea.”  When I was young, high school football games were not only popular, but the language of the game made its way into aspects of our teen-age dating lives, as when someone might “made a pass at you,” or behaved in a way that were “way out of bounds.”

Why do we use them?  Metaphors are visual and illustrative, but they sometimes run the risk of creating stereotypes, confusion, or becoming clichés.   Some, like sports and military metaphors are so common in our daily language, they are frequently used to describe the medical experience.  Common examples include parental metaphors, “she’s too sick to know the difference,” engineering metaphors, “coming in for a tune up”, or the commonly used military metaphor of cancer as a “battle” to be fought and won.  Nevertheless, metaphors are essential in our ability to describe and convey the experience of illness—and not just for the patient, but for the physician as well.

Dhruv Khullar, MD, in a 2014 article, “The Trouble with Medicines’ Metaphors, “published in The Atlantic, stated:   

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

As Khullar points out, “…we’ve internalized these metaphors, so much so that we often may not recognize how they influence us.”  Nevertheless, they are important and necessary to help convey what is difficult, at first, to describe, offering a shorthand way of making sense and communicating the experience of serious illness.   Just as we use metaphors to communicate to our friends and others, physicians use them to help patients understand the ramifications of their illnesses.  Interestingly, Khullar cited a 2010 study finding that physicians use metaphors in nearly two-thirds of their conversations with patients diagnosed with serious illness.  In fact, the doctors who used more metaphors in explaining medical conditions were seen as better communicators. Why?  Because “patients reported less trouble understanding them, and felt as though their doctor made sure they understood their conditions.”

 Metaphors get our attention.  They offer us a vivid way to communicate in an understandable way our experience of serious and life-threatening illnesses, whether patient, physician or care-giver.  If you explore any poetry of the medical experience, you’ll discover it is rich with imagery and metaphors that resonate with your own experience. For example, I have often used Mary Oliver’s poem, “The Fourth Sign of the Zodiac,” with its extended metaphor to encourage writing group members to explore their metaphors used describe the experience of diagnoses and treatments.

Why should I have been surprised?
Hunters walk the forest
without a sound.
The hunter, strapped to his rifle,
the fox on his feet of silk,
the serpent on his empire of muscles—
all move in a stillness,
hungry, careful, intent.
Just as the cancer
entered the forest of my body,
without a sound…

(In: Blue Horses, 2014)

Donald Hall, in his poem, “The Ship Pounding,” creates a powerful, visual metaphor of a great ship to describe the hospital and his experience of the final days spent with his dying wife, the former poet, Jane Kenyon.  He first describes going to the hospital to visit his wife:

Each morning I made my way   

among gangways, elevators,   

and nurses’ pods to Jane’s room   

to interrogate the grave helpers   

who tended her through the night   

while the ship’s massive engines   

kept its propellers turning…

—–

At first the tenor of the poem feels almost hopeful:

—–

The passengers on this voyage   

wore masks or cannulae

or dangled devices that dripped   

chemicals into their wrists.   

I believed that the ship

traveled to a harbor

of breakfast, work, and love…   

When the infusions

are infused entirely, bone

marrow restored and lymphoblasts

remitted, I will take my wife,

bald as Michael Jordan,

back to our dog and day.

But Kenyon’s illness is terminal, evident in the final lines, and as her disease progresses, his trips to the hospital become anxious, as he and his dying wife return to the hospital:

I listened in case Jane called

for help, or spoke in delirium,

ready to make the agitated

drive to Emergency again

for readmission to the huge

vessel that heaves water month   

after month, without leaving   

port, without moving a knot,   

without arrival or destination,   

its great engines pounding.

(In: Without, 1998))

“The Ship Pounding” is a moving and visceral image offered by Hall, one that makes experience of the narrator and his dying wife readily understood.

I often return to the wonderful book by former literary critic, Anatole Broyard, who died in 1990 from prostate cancer.  Entitled, Intoxicated by My Illness and Other Writings on Life and Death (1993) Broyard also explored the use of metaphor to think about and describe his illness:

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

Medicine continues to advance and offer us much more precise understanding of medical conditions and diseases, yet “metaphor,” as some authors have stated, “remains essential” as a way to convey the experience of illness.  As Broyard remarked, “Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers.”

Writing Suggestions:

What metaphors have you used to describe your illness?  How did they change as your condition changed?

  • Think about the ways in which you have used metaphors with family, friends or your doctors, to describe your experience of serious or debilitating illness.  How have they helped you understand and communicate?
  • Explore the different metaphors that describe your illness or condition.  Begin with a phrase, for example such as “Cancer is a…” or “Living with heart failure is like a…,”or “A heart attack is like…”  and finish the thought, noting what image or word emerges.  Remember, write quickly, without editing. Set the timer for five or ten minutes and keep your pen (or fingers) moving. Generate as many comparisons or metaphors as you can.  Once you’ve finished, read over what you’ve written.   What surprises you?  Do you discover any unexpected insights to your feelings?  How do your metaphors you navigate and explain your illness to others? 
  • Try writing a poem or narrative using the metaphors to describe your experience of illness or disease.
  • “Physicians who used more metaphors were seen as better communicators.”  True or False for you?  Has your physician used metaphors in communicating aspects of your diagnosis?  If so, do any stand out?  Were the metaphors useful in helping you understand your illness?

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?

May 25, 2021: Who Were You Then? Advice for the Younger You

Why should we travel back, who’ve come so far— 

We know who we are. 

How can we be the same 

As those quaint ancestors we have left behind, who share our name— 

( by A. E. Stallings, “Written on the eve of my 20th high school reunion, which I was not able to attend”, In: Poetry, 2008)

It begins with a photograph, one of the few from my childhood I have, nearly all others destroyed when my parents’ home, the one I grew up in, went up in flames many years ago.  In it, we are in his mother’s living room, a drawing of the famous “End of the Trail” sculpture by James Earle Fraser, hangs on the wall behind.   I stand by my father, now seeing the resemblance between us—his high forehead, the set of his mouth and narrow face.  I was four, not yet in kindergarten.  My toddler sister stands in front of me, wide-eyed and inquisitive, a mop of curly dark hair framing her face, but   I stand back, close to my father, shy and somber. My hair is neatly braided, tied with large bows, and I’m wearing my favorite Mary Jane shoes with white socks, the straps buckled around my ankles.  I stare at the camera, unsmiling. My discomfort with the camera will last all my life, as will the shyness, which I will work hard to overcome in my adult years.  If I could, now speak to that four year old girl, what wisdom might I have to offer to her?  What care?  What encouragement?

One of the recent exercises I offered in my writing groups these past weeks was the task of looking back at their younger selves, imagining who they were then—what dreams, fears, and hopes they might have had at a much younger age.  I ask the group members to imagine themselves at a younger age, remembering an old photograph of themselves, or, if writing alone, to choose a photo of one’s self at a much younger age.  Then I introduce the prompt by saying something like, “Study the photograph or take time with that image of the younger you in your mind, noticing all the details:  stance, facial expression, eyes, age, clothing, setting, all the details you can take in.   Now, think about who you are now, what you’ve experienced in your life thus far, and knowing what you have experienced and lived as of now,, what would you say to that younger self? What advice would you give the younger you?”

Interestingly, a similar question was at the heart of two studies reported in The Scientific American in 2019, Robin Kowalski and Annie McCord, of Clemson University, asked more than 400 individuals about the advice they’d offer to their younger selves.  They also asked if there had been a pivotal event in the respondents’ lives that influenced their responses.  The majority of answers people gave fell within the categories of relationships, education, and advice do with the self, for example, “believe in yourself.”  Other categories reported included money, health, goals, and addiction.  Not surprisingly, peoples’ advice often reflected missed opportunities and situations that they could not now change.  But some other responses included reflection on circumstances where “corrective action” could still be taken if one was motivated to change, for example, “finish school,” or “drink less and run more.”

For many, their advice to their younger selves related to a positive or negative pivotal event in their lives, most often occurring in the teens, early 20s or 30s. For some, there were regrets expressed in the reminiscing, but the authors wisely remarked that although advice may offer advice to your younger self, it doesn’t mean you must live with regret.  Some of that advice may well be useful to your present self.  Besides, the practice of occasionally reflecting on your past and your experiences may also inform your present and the ways in which you want to change or live your life going forward. 

I return to study the photograph of my four year old self again.  I still remember the events of that day; I feel tenderness toward that serious little girl in the photograph because she’d accidentally witnessed an argument between her mother and her beloved grandmother in the kitchen. There was a kind of anger between them I hadn’t seen before, and I was confused.  Why were they shouting at one another? How had my petite grandmother had the strength to shove my sturdy mother backwards?  What had made them so very angry at one another?  How could I love them both at the same time?  There is much I would say now, these many years later, to that confused little four-year-old girl.

Looking back may bring up old unresolved feelings or emotions, but there is a plus side too. In doing so, we can learn from the past and how it can inform our present, even our future intentions. Looking back can give us an opportunity to take stock of past experiences and life choices and learn from them. It also reminds us and helps us see of how far we’ve come, and appreciate the life we have.    As Derek Walcott expressed so beautifully in his poem, “Love after Love,”

The time will come
when, with elation,
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other’s welcome

Take down the love letters from the bookshelf,
the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

(In:   Collected Poems, 1948-1984)

Writing Suggestion:

Try writing to that younger self.  Begin with a photograph of yourself at a younger age.  Examine the younger self who looks back at you.   Study it, noticing not only the features, look in the eyes, the facial expression, your stance.  Take time to remember who you were then, your hopes, dreams, fears, sorrows, and questions.

  • How would you describe the person you’ve become from the one you were then?
  • What was it like to be you then? 
  • What hopes and dreams did you have? 
  • What desires?  What worries? 
  • What advice, what words do you want to offer to that younger self.
  • What, in your life now, do you want to change?

Remember, looking back at your past, your younger self, can be more than a passing reminiscence.  Reflecting on who you were then, who you’ve become, can help you feel gratitude for your life but also clarify how the way you want to live going forward and things you want to achieve or change as your life continues.

May 11, 2021: Living the Questions

Like you, there have been many times in my life that questions seemed to dominate my thoughts far more frequently than answers.  In my youth, my burning questions were often about whether or not some high school “love” interest “liked” me or not.  I was terribly shy around the opposite sex, and at the time, as tall or taller than many of the boys in my class, which only increased my insecurities in the arena of teen-age romance.  Then there were questions about college:  Which one?  Where?  Would I do well?  What if I didn’t? 

Some years later and newly married, my first husband and I contemplated his choice of graduate schools.  Questions dominated our conversations for months. In the end, we opted for adventure (it was the time of youthful idealism and protests) and ended up in Ottawa, where he began his doctoral studies.  We were wholly unprepared for Canadian winters or the loneliness we felt at the time, but gradually, Canada began to be “home” to us, especially in the years after his death.    Decades later, after returning to California for several years with my new husband, he announced his decision to retire from academic life.  We had our own questions, but family, friends and acquaintances peppered us with their questions.   “What are you two planning to do now?”  “You’re returning to Canada? Why?”  Their questions prompted our questions of one another: “But what would we do there?”  “What about our friends?”  “Will we sell our house?”  “What if we spent six months there and six months here?” 

Our transition revealed not only questions, but the realization that we didn’t always share the same wishes and wants for our “What’s Next?” chapter.  Nights were often punctuated by restlessness, the questions invading my dreams.  My notebook was filled with questions, a continuous loop of repetition, and I wasn’t finding any answers in what I wrote.  I don’t quite remember how long it took or when, but we stumbled into a joint decision, downsized our lives, sold our home, and watched as the movers loaded up the van with our worldly belongings and set out, as we did, for Toronto. 

This past weekend, I presented a workshop for Young Adult Cancer Canada (YACC) on the subject of writing for health and specifically, writing alone.  The willingness to “live the questions,” to find yourself groping in the darkness, are part of what writing honestly demands. The answers, in life or in fiction, are revealed as you write, gradually writing yourself into knowing, but not without making your way through the dark before stumbling on a new insight..  E.L. Doctorow, author of the award novels Ragtime and Billy Bathgate, famously remarked that when one sits down to write a novel, “You can only see as far as your headlights but you can make the whole trip that way.”  

Life doesn’t come with a set of answers, but it is riddled with questions.  It’s like making our journey in that darkness of the unknown at times.  We navigate through it as best as we can, deal with unexpected events, difficult chapters, the illnesses and losses we experience.  Cancer is one of those unwelcome chapters in your life, and the journey through it is not unlike what Doctorow describes.  You survive the shock of diagnosis, the worry and after-effects of surgery and chemotherapy, roller coaster of recovery, but despite all that, you can’t see very far ahead.  There are no certainties.  Your life is punctuated by more questions than answers. “Has the treatment worked? How likely is my cancer to recur?  What if it has metastasized and is lurking somewhere else in my body? Stage four?  Then how long do I have?”  No one can offer you certainty.  You navigate through it all in the same way Doctorow described of writing, able to see only a short distance along the path, but gradually finding your way into the answers.

 “Questions in the Mind of the Poet While She Washes Her Floors, “a poem by” Elena Georgiou, poses several questions, ones that play in in the poet’s mind, and like life, don’t come with answers.  Here is an excerpt:


Am I a peninsula slowly turning into an island?

If I grew up gazing at the ocean would I think
life came in waves?

If I were a nomad would I measure time
by the length of a footstep?

If I can see a cup drop to the floor and shatter
why can’t I see it gather itself back together?

If a surgeon cut out my mistakes
would the scar be under my heart?

How much time will I spend protecting myself
from what the people I love call love?

Would my desires feel different if I lived forever?

  (In:  Mercy Mercy Me, © 2000)

Georgiou offers no answers to the reader.  Nor did Austrian novelist and poet, Maria Rainer Rilke (1875-1926) when he offered advice to a youthful protégé, published in his wise little book, Letters to a Young Poet.   “Don’t search for the answers,” he wrote, “which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

Live everything.  Live the questions…  Live the questions nowLive your way into the answer.   I have often quoted Rilke to the men and women who attend my writing workshops.  His words are as insightful now as they were over a century ago.  Whether cancer or embarking on a significant change, living through the questions is not easy, yet it is all you can do. Your task is to be present, to pay attention and live life fully.  Not surprisingly, when you do, you often stumble upon the answers you seek. 

Writing Suggestions:

  • Whether you’re wrestling with the aftermath of a cancer diagnosis or some other unexpected life challenge, make a list of the questions that keep replaying in your mind.  Choose one and for 15 minutes, explore it as you write.
  • Recall an earlier time in life when you faced the unknown.  What questions did you have then, and how did you find your way into the answers?  Are there insights that may pertain to your current challenges?  Write about that time, the questions and how they were resolved.
  • You might use one or two of the poet Elena Georgiou’s questions as your prompt.  Choose it and again, writing nonstop for 15 minutes.  Then read over what you’ve written, underline those words or phrases that stand out.  In a day or two, you might begin with one of those phrases you underlined and explore it more deeply.  You just might discover some wisdom that leads you to some of the answers you’ve been searching for.

March 28, 2021: There’s Not a Book–or App–on How to do This

Siri, that monotonous virtual voice of iPhone assistance, has proven to an unreliable narrator.  Where I once counted on “her” for directions to my desired destination by her unflappable female voice through streets and freeways of my city and arrive at my destination without getting lost, I have been often been offered directions to places not in Toronto, but a city in Oklahoma or somewhere north of Algonquin Park. I confess that more than a few expletives have sometimes been uttered in Siri’s direction.   

How, I wonder, did I ever get from point A to point B in the years I was consulting with organizations scattered all over greater Toronto or the multitude of new technology firms in Silicon Valley?  But now, it seems we’ve all become seekers of much more than driving directions.  We search for advice and directions for navigating our lives.  Yep, there’s an app for all that.   On countless mornings my husband and I turn to our mobile phones for answers to our questions.  (I have dubbed my iPhone as “the fount of all available knowledge.”)  Sometimes I wonder how we managed to get through adulthood without the abundance of advice and information available in today’s world. 

The internet has no shortage of advice, whether we’re seeking advice on how to prepare food, get directions to places, assemble furniture, fill out required forms, deal with relationships, child-rearing, or emotional and health complaints.   How did we remember directions, facts and other things before the ease of our technology gave us instant answers?  I can’t help but wonder how my grandchildren will grow and learn with ever more sophisticated technologies as part of their lives.

Ask a question about anything, whether your mobile phone or the internet, and you’ll find a preponderance of information, self-help websites, blogs and books.  In 2011, Dr. Jim Taylor, writing for The Huffington Post, commented that whether forced to change due to unexpected illness, hardship or loss, there was likely a book, podcast or DVD offering you a step-by-step explanation on how get through your latest life upheaval.  By 2017 the self-help industry alone was valued at around $9 billion, and in 2019, at $11 billion.  Now it’s estimated to grow to over $13 billion by 2021. “Contrary to the assertions of just about every self-help book that has ever been written,” Dr. Taylor wrote, “change takes incredible commitment, time, energy and effort. Someone might be able to show you the way, but you have to make the journey yourself.”

 And making the journey yourself is something every cancer patient or survivor fully understands. 

Teva Harrison, award-winning cartoonist, who wrote and illustrated In-Between Days (2016), a graphic memoir of her journey with a life-threatening cancer.   “When I was first diagnosed, I made all these frantic lifestyle changes, as if I could turn back time, undo my bad luck.  I think a lot of us do that…I was frantic, driven by panic,” she wrote.   As her cancer progressed and treatment changed, she faced living with an ever-advancing and terminal cancer.  She wrote, “If we manage to stabilize it, it’s only stable for an indeterminate while…it’s only a matter of time before it finds a way around the barricades and begins to grow again…” 

Harrison’s cancer journey required she adapt to and navigate her life through constant change, yet even in the face of a terminal and progressive illness, she sought ways to enjoy what she could. “I mean, the cancer is here, and I have a life to live.  And sometimes living well includes eating something made with sugar or having a glass of wine with dinner,” not something she’d likely find to be advised by the health literature, yet necessary for her.   “I’m not going to be hard on myself,” she said, “I’m going to enjoy every minute I can.” Harrison did her best to enjoy the time she had left, widely mourned in Canada when she died at age 42 in the spring of 2019.  Her humor, honesty and sorrow continue to be cherished for many diagnosed and living with cancer.

Thankfully, there are a wealth of excellent cancer support programs and resources for those living with cancer.  Writing groups, such as I continue to lead, are one example.  The shared experiences of the cancer community can be a source of comfort, making you feel less alone or saying the things you find difficult to articulate yourself.  Again, and again, I witness the power of the group experience to help overcome loneliness, to give voice to feelings and fears, and, even as some face terminal diagnoses, to offer support in multiple acts of kindness—something far more meaningful than self-help books and sites can offer.

In the poem, “There’s Not a Book on How To Do This,” cancer survivor Sharon Doyle reminds us of the challenge of discovering your own way through cancer as she sketches the composition for her fall garden, her celebration of her cancer journey ending. 


There’s not a book on how to do this,
but there is an emphasis on composition.

The trucks that slug by under our window
hold trombones, mirrors, dictionaries.
It’s not my fault they invade
the calm of trees like cancer.  I

don’t have cancer anymore…

…I rarely remember the
uterus I don’t have.  One of my sons said,
“You were done with it right away, right, Mom?”
I guessed so…


(In:  The Cancer Poetry Project, v. 1, 2001, Karin Miller, Ed.)


There’s not a book on how to do this…” Cancer or any major life challenge doesn’t come with the luxury of a GPS or an “app” to help us navigate through our life upheavals, fears, or grief.  Yes, you may find help from others’ advice; you may have the comfort of family, friends and others, but ultimately, the journey is yours to navigate.  It’s a road full of unexpected twists and turns, conundrums and set-backs, yet with each step you take, you begin composing that new life, the one that honors where you’ve been and what you’ve discovered about yourself and the way you want to create your live going forward.  That is, truly, when healing begins.


Writing Suggestions:

As you write, reflect on your own life journeys and life during and after cancer treatment. 

  • What was most helpful for you as you navigated the rough waters of profound and unexpected change? 
  • What internal compass—your beliefs, aspirations, or faith—played a part in helping you rediscover hope and embrace a new life?
  • Based on your experience, what advice or suggestions might you offer someone just beginning the journey through cancer?
  • If you could compose a garden, painting, sculpture or collage to honor your cancer experience, what would it include?

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? 

One Word for 2021: Gratitude

The new year always brings us what we want
Simply by bringing us along—to see
A calendar with every day uncrossed,
A field of snow without a single footprint.


(From: “New Year’s” by Dana Goia, from Interrogations at Noon, 2001)

For several days now, I have been reflecting on the year gone by, 2020, the year of a pandemic, of social isolation, masks and lockdowns…a year unlike any I’ve experienced before, challenging my assumptions about life and living, daily reports of escalating cases of COVID and of deaths.  An undercurrent of caution, of worry seeping into my daily life…hope, much of the year, seemed elusive, and I struggled, some days, to dig myself out of a persistent case of the blues.

Rewinding the mental tape of the year just passed, I recalled my intention, the choice of my guiding word, for 2020. “Calm.”   It has been impossible to miss, this word, displayed, as I do each year, in a small frame on the bookshelf in my office.  A word that confronted me every single day of the past year, but a one, given the landscape of 2020, that fell by the wayside within weeks of the first COVID case in Canada.  Calm was all but absent in the context of this past year for me.  I fall into the category of “higher risk” where COVID is concerned, and given the political tension and upheaval in the US too difficult to ignore, my days were nagged by a persistent undercurrent of worry and low-level anxiety.  I tried, for a time, to live with “calm” daily, but despite frequent self-admonitions, attempts at meditation and extended periods of deep breathing, it didn’t work.  Tension and anxiety were my regular visitors.  Any pretense of calm was just that, utter and complete pretense.

With the daily onslaught of reporting—which I tried not to read and failed miserably—whether about new numbers of COVID cases and deaths or the nearly unbelievable reports of the circus surrounding the US presidential campaign and election, hope was nearly nonexistent, at best, a slender thread that seemed to be growing fainter each day.  My notebook attests to the dark cloud that grew and hovered overhead.  I wrote, as is my daily habit, but increasingly, I found myself going down the rabbit hole more than a few times.  Gradually, I found a reprieve in the daily practice of making explicit my gratitude for those on the front lines, unexpected kindnesses, shared laughter, and little surprises or inspiration from others. 

Articulating gratitude became the most important habit in my daily life, the one that balanced out the tension, complaints, worry or depression.  It served to remind me of the gifts I have in my life vs. what I didn’t.  Making gratitude explicit in a daily list, halted those self-defeating thoughts and forced me to be quiet, observe, and remember all that enriches my life.  It’s what I want to carry into this new year, a spirit of gratitude.

2021.  Hope, where the pandemic is concerned, is within reach, even though there is still much healing ahead of us in the coming months.  Yet as I say good-bye to this tumultuous and difficult year, I do not want to forget all that has happened around the world and there is yet much work to do for the good of all people:  eliminating disease, hunger, poverty, violence, racism, and wanton disregard for this fragile planet.

It’s no surprise that the guiding word I have chosen for 2021 is simply “gratitude.”  It’s not only a way of remembering what is good in my life, but hopefully, makes me more aware and intentional in responding to others with kindness, generosity, and forgiveness.  This is the only life I’ve got—gratitude also ensures I am intentional in how I live it, and the kind of footprint I leave in each day of the year ahead.

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?

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?

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 –

What can anyone give you greater than now,
starting here, right in this room, when you turn around?

(“You Reading This, Be Ready,” by William Stafford, from The Way It Is, 1992)

Writing Suggestions:

.  What is the word or intention you have for this new year?  Write it down, exploring the reasons you have chosen this one word to frame your intention.

.  I’m not one for resolutions, since I rarely followed through on the vast majority of them, despite my good intentions!  But if resolutions for the new year are your preference, then write them out—and also spend some time exploring the reasons for each one you’ve chosen.

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?