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Archive for October, 2014

“In remission,” “no evidence of cancer at this time…”  Words uttered tentatively, hopefully, as some members of my writing groups introduce themselves.  They’re grateful, of course.  “In remission” signals a reprieve from the relentless routine of doctor’s appointments, scans, tests, and weeks, even months of treatment regimens.  It means a return to a so-called “normal” life, but normal doesn’t have the same meaning it did before cancer, and that re-entry into normality now feels unfamiliar, almost surreal.  Treatment gave us structure, a routine that defined the days before us.  Now, “in remission,” the way you experience the world has changed, and you realize that returning to life as it was before cancer is nearly, if not completely, impossible.

“In remission.”  You‘re one of the lucky ones.  Your treatment has been successful, at least for now, because cancer, we know, is capricious and unpredictable.  You live with the knowledge that as a survivor, you may not be guaranteed a permanent state of grace.  You may have many years left to live; perhaps less.  One thing is certain: you never take anything for granted.

There’s something else.  You may even feel a little guilty, especially when, in your cancer support groups, you know many whose prognoses are less favorable and who might lose their lives to cancer.  You’re relieved, yes, but it can seem unfair.  Why have you survived while others may not?  You may question your life, how you can make it matter, live in a way that “makes a difference.”

“I’ve gone from thinking, ‘Why me?’ to thinking, ‘Why not me,” a former writing group member said.  “In the beginning, it was comforting to think of fighting to survive…   I believe that I should have a powerful drive to accomplish something…a goal for which I need to continue to survive.  But,” she confessed “I don’t find that drive in me.”

Her words resonated with me.  That self who was so goal-driven before cancer, eyes always on what lay ahead, has all but disappeared.  I was missing out on the joy of the present—moments that are ordinary and yet, so much of what living is about.  If we are to learn anything from being “in remission,” it’s about living and enjoying each day of the life we have been granted, however long that may be.

What is living about for those lucky enough to be “in remission?”  Nancy, a former group member wrote, “I love the things I do day by day.  I hike with one beloved friend.  I spend time in the wonderful garden of another.  I meet others for coffee and conversation. I meet these friends with pleasure and leave them with a joy and benefit to my mind and spirit…”

Like so many of us, Nancy rediscovered comfort and meaning in the ebb and flow of everyday life, small pleasures of love, companionship or nature.  “It frees me from having to make every moment count, she wrote.  It takes off pressure that would exist if I had to accomplish something in particular before I die…”

It is a kind of love, is it not?
How the cup holds the tea,
How the chair stands sturdy and foursquare,
How the floor receives the bottoms of shoes
Or toes. How soles of feet know
Where they’re supposed to be…

From the skin of the back.
And the lovely repetition of stairs.
And what is more generous than a window?

(From:  “The Patience of Ordinary Things,” by Pat Schneider, in Another River:  New and Selected Poems, 2005)

I remember Nancy’s words to from time to time because despite my resolve, I sometimes slip into old habits of being, putting my daily life on fast forward as my list of “to dos” grows.  It’s easy, I realize, to forget that the real task of being alive is to be present and pay attention to what is right in front of my nose, those little moments of beauty, joy, or laughter.  A morning walk with my dog—who finds pleasure every single day, despite the predictability of our route, or the daily frolic of a group of humming birds at our fountain are enough to remind me to pay attention and discover the inspiration waiting,  the simple pleasures found in the commonplace.

Ann, who wrote with me at the Stanford Cancer Center for several years, losing her life to cancer in 2012, sent me a poem several years ago while she lived and wrote in a small cabin in the Santa Cruz mountains, choosing to spend the final year or two of her life in the quiet beauty of the California redwoods, her source of inspiration and peace.  She was much loved by many of us, inspiring in us a reverence for life, the beauty found in the ordinary of each day.  Her poems linger in my mind, luminous and alive, even though Ann is no longer here to read them to us.  In the poem, “Directive,” she reminds us how precious life is, how abundant the gifts of what we consider commonplace:

Remember the commonplace, the wooden chair on the white planked deck,
trees kneeling in the rain and deer prints
leading into elegant rushes. A kinder place
cannot be found: where you sit at the top
of shadowy stairs, the window lifted…

Let me speak for you: there’s comfort
to be found in fatigue, in letting principles
fall like stones from your pockets…

Fall into the ordinary,
the rushes, the deer looking up into your heart,
risen, full in the silver hammered sky.

(From “Directive,” by Ann Emerson)

Remember the commonplace… Take notice; find gratitude for the simple joys of living.   Choose one small moment from any day, whether from nature, loved ones, your daily routine—a simple pleasure that sustains, inspires or offers you joy.  Describe it in as much detail as you can; perhaps you’ll find a poem or a story lurking there.

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I’ve been passing judgment on others’ writing.  It’s known by another name, grading.  It’s how I’ve spent my weekend, reading and commenting on the students’ submissions for my current course for UCLA extension Writers’ Program.  I won’t lie.  It’s complicated.  On the one hand, I have to model the balanced feedback I require from them, a blend of positive and constructive, all with the intent that feedback—which is always received emotionally—will be instructional, helpful in their quest to improve upon and develop their creative writing craft.  On the other, I’m sometimes impatient, reading a submission that doesn’t come close to my expectations for students at their level.  That’s when the agony begins.  I have to curb my impatience, silence the ever-present critic which threatens to fill someone’s submission with red marks, and call up the more benevolent, but instructional self.

I remember how I felt (and still feel) when I received critique.  I’m back in grade four, Mrs. Herfindahl’s class, and I’ve written my version of the biblical Christmas story in my most careful penmanship, careful to use quotation marks when someone speaks, to indent my paragraphs, to stay true to the story I’d been told in Sunday school countless times.  Perhaps I plagiarized a bit, opening up my brand new King James Version and copying a few phrases here and there, but surely, I thought, I had handed in a story worthy of an “A.”

In first grade Mrs. Lohr

said my purple teepee

wasn’t realistic enough,

that purple was no color

for a tent,

that purple was a color

for people who died,

that my drawing wasn’t 

good enough

to hang with the others.

 

I walked back to my seat

counting the swish swish swishes

of my baggy corduroy trousers.

With a black crayon

nightfall came

to my purple tent

in the middle

of an afternoon.

(From:  “Purple,” by Alexis Rotella, in Step Lightly:  Poems for the Journey, by Nancy Willard, Ed., 1998.)

My paper wasn’t worthy of that “A,” at least not in Mrs. Herfindahl’s opinion.  When it was returned, a “B+” glared back at me in bright red ink, and throughout my carefully penned story, a host of red marks.  I felt terrible, and to this day, I imagine my students feeling similarly when my comments are less than glowing.  Ouch!  Writing, I have since discovered many times, is an act of living with rejection many times over, and yet, I keep on writing, because it’s what I’m driven to do, what I love doing, and I learn it’s possible to improve as I begin work on another version..

As it turns out, it’s not our grade school teachers, the magazine editors or our creative writing instructors who are our fiercest critics.  Sure, we may have suffered a few harsh evaluations along the way, grown up with a demanding parent telling us repeatedly we were capable of so much more or better.  But take a look in the mirror.  Your most vociferous critic lives inside your head.  You’re looking at her.

We all judge ourselves, whether we’re trying to write, paint, perform on stage, or, more likely, parent our firstborn child or juggle the many balls in the air of our busy lives, even as we cope with cancer and the effects it has on our lives–especially when we complete treatment and recovery, returning to the altered and new “normal.”  It’s when we feel we’ve somehow disappointed others, fallen short of some unspoken level of attainment, or let ourselves down,  our self-recriminations  become especially loud—a veritable Greek chorus.  And we all have them, those noisy, old internalized voices that chide us from time to time, saying “you should do better than that, you know.”

How do we silence those critics, especially those who live in our heads?  How do we practice a little self-forgiveness and allow ourselves the freedom to be messy, woefully imperfect, or terribly human?  A little humor can help.   In a poem guaranteed to make you smile, Kaylin Haught asks God for permission to be herself—and not worry about punctuation!

I asked God if it was okay to be melodramatic
and she said yes
I asked her if it was okay to be short
and she said it sure is… 

Thanks God I said

And is it even okay if I don’t paragraph
my letters
Sweetcakes God said
who knows where she picked that up
what I’m telling you is
Yes Yes Yes

(From:  The Palm of Your Hand, 1995)

In “Marks,” Linda Pastan pokes some fun at the frustration of being graded as a wife and mother by her family members:

My husband gives me an A
for last night’s supper,
an incomplete for my ironing,
a B plus in bed.
My son says I am average,
an average mother, but if
I put my mind to it
I could improve.
My daughter believes
in Pass/Fail and tells me
I pass.  Wait ’til they learn
I’m dropping out.

(From Five Stages of Grief, 1978)

What about you?  How do you grade yourself?  When does your internal critic get in the way?  What kind of permission do you want to give yourself?  This week, write about grades, grading yourself, being graded by others–and as you do, try silencing those tiresome voices with a bit of humor!

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Loss.  It’s something that seems to dog you at every turn when you are dealing with cancer.  It’s a persistent shadow, sorrow that accompanies the awareness of how your life is changed, and not in ways you wished for or anticipated.  Larry Smith, poet and cancer survivor expresses the sense of loss in his poem, “What You Realize When Cancer Comes:”

You will not live forever—No,
you will not, for a ceiling of clouds
hovers in the sky.

You are not as brave
as you once thought.
Sounds of death
echo in your chest.

You feel the bite of pain,
the taste of it running
through you.

Following the telling to friends
comes a silence of
felt goodbyes. You come to know
the welling of tears…

Loss is a predominant theme in the beginning weeks of my “Writing Through Cancer”workshops.  A few years ago, I began a session with a short warm, inviting the group to write about anything on their minds for a few minutes.  When I asked who wished to read aloud, one young woman quickly volunteered.

“I’m angry about losing my hair,” she began.  “It’s been my signature, long and full…”  She looked up from her notebook.  Her eyes were red and teary.  Several women nodded sympathetically, while I recalled my own embarrassment, when, as a teenager, I sported a bald head after neurosurgery, covering it with scarves as I returned to school, feeling unattractive and vulnerable and praying no one would laugh at me.

It grew back, of course, and so did the young woman’s, becoming full and long over time.  But the feelings of loss are synonymous with cancer, and the losses involve much more than hair.

In a recent workshop, I invited the participants to write about the losses experienced because of cancer.  Besides hair, the losses included breasts and other body parts, the sense of self each once felt; even friends, along with dreams, hopes, and loved ones.  As the list of losses grew, it seemed cancer was like living in a barren landscape of overwhelming loss, hopelessness and grief.

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth…

(From “Kindness”, by Naomi Shihab-Nye in The Words Under The Words ©1994)

“Feel the future dissolve in a moment…”  A diagnosis of cancer undoes us at first, like being tossed into a maelstrom of fear and loss.  The very word can temporarily rob us of hope and joy, replacing them with fear and sorrow.  Gradually, as treatment and recovery progress, something else happens.  We find things:  new strength, new self-understanding, and new awareness of the world around us.

Your children are stronger
than you thought and
closer to your skin.

The beauty of animals
birds on telephone lines,
dogs who look into your eyes,
all bring you peace…

Songs can move you now, so that
you want to hold onto the words
like the hands of children.

Your own hands look good to you.
old and familiar
as water…

(From:  A River Remains:  Poems, by Larry Smith, 2006)

After my group members read the lists of losses aloud to one another, we didn’t stop there.  I invited them to write again, this time asking,  “What have you found?”

Would it surprise you to know that the list of meaningful things discovered or found overshadowed the losses?  Their lists included new friends, faith, even strength they didn’t know they had, greater love with spouses, clarity about what truly matters in their lives, new dreams, a sense of freedom and awakening and, as one person put it, “the realization that I am not my body.” All the losses were coupled with new discoveries, new knowledge, self-insight and understanding, new facets of themselves to explore and cherish.  Cancer, as someone remarked in an earlier session, can be a great teacher.

This is not a dress rehearsal…today is the only guarantee that you get… think of life as a terminal illness, because if you do, you will live it with joy and passion, as it ought to be lived.

–Anna Quindlen

We all suffer losses throughout our lives.  It’s not just those of us who’ve experienced cancer that discover the gift of each day we’re given.  Life, as Anna Quindlen suggests, is like living with a terminal illness.   We must learn to balance our losses with new discoveries, new joy, and a passion for each day we live.  As William Stafford described in the poem, “The Gift:”

It’s a balance, the taking and passing along,
the composting of where you’ve been and how people
and weather treated you.  It’s a country where
you already are, bringing where you have been.

(From: My Name is William Tell, 1992)

Create your balance sheet this week.  On one side of the page, list the losses in your life since cancer; on the other, list the gains.  Write about not only the things you’ve lost since cancer, but now, write about what you’ve gained.  Which do you want to emphasize in your life?

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Each week I’m led off

to the clinic for my infusion

as if I’ll be handed a steaming,

fragrant cup of pleasure.

My wig’s a supercranial prosthesis

and I’m not a yacht but have my own port,

below my clavicle, so the poison

can go straight to my heart.

The chemo room is nothing

like the ocean

or even a river;

it’s a murky swimming hole

with snakes and gators and turtles…

(“Infusion Fridays,” by Terry Godbey.  Cancer Poetry Project, Vol. 2, 2013)

In 1978 Susan Sontag wrote Illness as Metaphor, now considered a classic, but at the time, described as Newsweek as “one of the most liberating books of its time.”  Sontag was a cancer patient during the time she wrote, and she not only explored how the metaphors—and myths—that surround cancer and other illnesses, can add to the suffering of patients.  But there was another side to Sontag’s narrative.  Writing in the January 26, 1978 issue of The New York Times, Sontag stated:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.  I want to describe not what it’s really like to emigrate to the kingdom of the ill and to live there, but the punitive or sentimental fantasies concocted about that situation; not real geography but stereotypes of national character. My subject is not physical illness itself but the uses of illness as a figure or metaphor.

Metaphors abound in our daily lives.  Some of you may recall how former White House counsel John Dean referred to “the cancer on the Presidency,” or in revised versions that followed, as a cancer within — close to the Presidency — that’s growing.”  Like it not, metaphors are powerful influences on how we think about illness or the state of the nation.  And in the “kingdom of the sick,” of cancer, metaphors exert a subtle or not so subtle influence on how we perceive and deal with our illness.

Not surprisingly, in our culture, physicians and patients alike often see cancer as a battle.  While “fight” or battle metaphors can provide meaning and purpose for many, in this country, war is the predominant metaphor used in the cancer experience.  According to Gary Reisfield and George Wilson, authors of the article “Use of Metaphor in the Discourse on Cancer,”

This metaphor [war] is ubiquitous in our society (witness, for example, the “wars on drugs, poverty, illiteracy and teen pregnancy).  It is easily adaptable to cancer…there is an enemy (the cancer), a commander (the physician), a combatant (the patient), allies (the healthcare team), and formidable weaponry (including chemical, biological, and nuclear weapons)… (in The Journal of Clinical Oncology, 2004).

They authors also point out that war is not the only metaphor used in the discourse on cancer.  Another commonly used metaphor points to also the universal “life is a journey,” overlaid on those whose lives have been altered by cancer.  They suggest that “the journey” metaphor may be more applicable to 21st century cancer, as the disease has gradually transformed from an acute to a chronic illness, and for some, is enmeshed in an individual’s life narratives for years, even decades.

Yet I think it’s important to remember that the metaphors we use are deeply personal, whether in illness or used to describe other chapters of our lives.  The war metaphor may rankle some of us.  The journey metaphor might not capture what we experience ourselves.  Metaphors originate from what we know, what we have experienced in our lives.  As the poet Marge Piercy reminds us:

 Imagery comes directly out of your own core. It comes from how you perceive the world, how carefully you look and listen, how well you remember, how your mind works. What we have to draw on is largely dependent on how much attention we’ve paid to what’s within and outside of us.

This past Friday, I invited my Moores UCSD Cancer Center writers to explore the metaphors they use to describe their cancer experience.  We began by brainstorming, starting with the phrase, “Cancer is ___________________” and adding the images that came to mind.  The results were as varied and distinctive as the people in the room.  Cancer became a cockroach, a hidden bomb, a teacher, a menacing character loitering in a dark alley, an interruption, something unwanted, but hidden under layers of paint and wood rot, and for another, a flashlight in the forest of life.  From the generation of the metaphors each used to define their experience of cancer came longer narratives, the metaphor extended into a poem or story.

“This was challenging,” many said after we’d written and read aloud, and yet, “exciting.”  Our metaphors made the abstract visible, felt, something each person in the room could easily visualize.  Exploring the metaphors we use also helped us gain insight in and understanding of how we perceive and deal with cancer in our lives.

“Always in emergencies we invent narratives…Metaphor was one of my symptoms,” Anatole Broyard wrote in Intoxicated by My Illness, a memoir of his prostate cancer.  “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.”

This week, pay attention to the metaphors you use every day to describe aspects of your life.  If you’re living with cancer, explore the metaphor that defines how you think about and navigate your way through it.  Begin with a little brainstorming as my group did this past week.  Then choose one, continue writing and see where it takes you.

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