Feeds:
Posts
Comments

Archive for the ‘writing for wellness’ Category

A Lesson

By Judy Rohm

 

At a breast cancer rally she rises

Above sixteen positive lymph nodes

To tell the world that cancer is a wakeup call

That resonates to the cell level.

It’s a lesson taught by trembling hands

That squeeze from today a second cup of coffee

On a sunny deck with someone you love.

It is a slap that sends you flying from Michigan

To Cozumel because cancer teaches that snorkeling

Coral reefs pays greater dividends than a savings account

And mowing summer grass can be postponed

For bike rides past wild flowers and country streams,

And vacuuming the carpet and washing the windows

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

Cancer is not a gift but a lesson

Full of loving now and living presently.

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

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

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

“In my experience, ill people become more themselves, as if once the excess was stripped away only the truest core of themselves remained.   …novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.” (New York Times, August 14, 2000)

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

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

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

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

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

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

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

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

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

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

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

 Writing Suggestions:

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

Read Full Post »

“I guess I’ve become a cancer survivor,” my husband announced over our morning coffee.  It seemed strange to hear him say it, even though his use of the label is correct.  The National Coalition for Cancer Survivorship (NCCS) originally defined survivor as “any person diagnosed with cancer, from the time of initial diagnosis until his or her death.”  Less than two weeks after his surgery, he’d joined the ranks of those living with cancer, a survivor.

We received his pathologist’s report earlier last week, learning that his chances of recurrence in the next five years were lower than we expected, although he will be participating in a clinical trial at the recommendation of the doctor, which he readily agreed to do.  Minus one of his two kidneys post-surgery, you’d hardly know that a month ago, he was dogged by fear and worry.  Now, his mood is lighter, his humor has returned, and he’s begun to resume normal activity.  But our conversations are different–quieter in tone, deeper in subject matter, with a stronger sense of gratitude for the life we have and a determination to live as fully as we possibly can for as long as we can.

Cancer teaches us, whether we are the patient or the caregiver, about what’s important in our lives–what truly matters.   My husband, who rarely shows emotion, is much more likely to exhibit his softer side, whether he is relating a touching life story heard in his Toastmasters Club or has written notes of gratitude to the several Toronto friends who have offered their help and support to us in the past weeks.   Life, I think, seems much more precious to him in the wake of his cancer experience.

In the preface of her book, Survival Lessons (2015), Alice Hoffman wrote of her cancer journey and becoming a survivor, saying I forgot that our lives are made up of equal parts sorrow and joy, and that it is impossible to have one without the other.  This is what makes us human…I wrote to remind myself that in the darkest hour the roses still bloom, the stars still come out at night.  And to remind myself that, despite everything that was happening to me, there were still choices I could make.

Lynne Eldridge, MD, in her recent article about positive changes in people after a cancer diagnosis, stated “Research tells us that most people experience some degree of “post traumatic growth”…describing these changes with words and phrases such as:

  • Silver linings
  • The benefits of cancer
  • “What cancer has taught me”
  • Meaning making, sense-making, or benefit finding
  • Life transforming changes
  • The blessings of cancer

While she acknowledges not all cancer survivors experience positive personal growth, “one-half to two-thirds of survivors admit to some positive changes,” and find more the longer the time since their diagnoses.   Examples of these positive growth changes include:

A greater appreciation for life, enriched personal relationships, compassion for others, deepening spirituality and the discovery of “benefits”–or silver linings–in one’s cancer journey.  As one person said, “I wouldn’t wish cancer on anyone, but looking back, there are ways that I’m a better person than if I’d never had cancer.”

Dana Jennings, a New York Times editor, who published regular blog posts throughout his diagnosis, surgery and treatment for prostate cancer, reflected on life after cancer, saying, Living in the shadow of cancer has granted me a kind of high-definition gratitude. I’ve found that when you’re grateful, the world turns from funereal gray to incandescent Technicolor…The small moments of gratitude are the most poignant to me because they indicate that I’m still paying close attention to the life I’m living, that I haven’t yet succumbed to numbing obliviousness.

When you have cancer, when you’re being cut open and radiated and who knows what else, it can take a great effort to be thankful for the gift of the one life that we have been blessed with. Believe me, I know.

And sometimes, in the amnesia of sickness, we forget to be grateful. But if we let our cancers consume our spirits in addition to our bodies, then we risk forgetting who we truly are, of contracting a kind of Alzheimer’s of the soul.

And so to our lives. My husband and I are more aware now of our mortality, the reality of being human, growing older, and having survived more than one serious illness.  There’s a sense of peacefulness, perhaps, that has become more present in our day-to-day living than we knew in the years of chasing careers, moving across the country four times, and running as fast as we could.  Serious illness teaches you to slow down, smell those roses, and enjoy, truly enjoy, the simple pleasures found in your daily life.

We’re grateful for the fact that my husband’s cancer surgery was successful and for the fact that his chances of recurrence are slimmer than we thought.  We are focused more on the simple pleasures of living and being together, reminded again of the preciousness of life, family, and friends.  “Cancer is not a gift/but a lesson,” Judy Rohm writes in her poem, “The Lesson, “full of seeing now and living presently.”  (In:  The Cancer Poetry Project, V. 1, 2001).  Living fully, presently, is what we are striving to do in our lives.

This is what life does.  It lets you walk up to
the store to buy breakfast and the paper…

Life lets you take the dog for a walk down to the
pond, where whole generations of biological
processes are boiling beneath the mud…

…And then life lets you go home to think
about all this.  Which you do, for quite a long time.

Later, you wake up beside your old love, the one
who never had any conditions, the one who waited
you out.  This is life’s way of letting you know that you are lucky…

(In:   Our Post Soviet History Unfolds, 2005)

Writing Suggestions:

  • Write about being a survivor of cancer and how having experienced cancer has change you:  your life, your outlook, how you approach each day.
  • Have you become more or less grateful for your life post-cancer?  Why?
  • What matters most to you in life now?  Try capturing your sentiments in a poem or personal essay.
  • A way to begin?  Try making a list of “Before Cancer, I was…” then do the same with “After Cancer, I am…”  Choose one or two and develop those feelings into a narrative.

Read Full Post »

We sit on the bench in the hospital corridor
next to the cafeteria, and we wait.
You know what waiting is.
If you know anything, you know what waiting is.
It’s not about you.
This is about
illness and hospitals and life and death…

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

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

Hurrying up to wait is, of course, the fate of most patients, whether or not they have cancer and no matter how impatient they may be. But for cancer patients, waiting entails being enveloped in heightened fears about harmful protocols and the difficulty of eradicating or containing the disease. While I’m waiting, who knows what appalling cells are conspiring within my body to destroy my being? (From:  Well, “Living With Cancer: Hurry Up and Wait,” The New York Times, December 3, 2015).

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

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

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

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

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

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

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

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

 

Writing Suggestions

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

Read Full Post »

To be a person is to have a story to tell. — Isak Dinesen

Storytelling has been an integral to being human for thousands of years.  Our stories have given us a way to engage, to share our experiences and find, in one another’s stories, themes and experiences we share.  Storytelling began, in part, as an oral way of helping people make sense of their worlds.  They were the mechanism by which traditions and wisdom passed from one generation to another.  “There have been great societies that did not use the wheel,” author Ursula LeGuin once said, “but there have been no societies that did not tell stories.”

Tell me a story.

In this century, and moment, of mania,

Tell me a story.

(Robert Penn Warren, Tell Me a Story,” in New and Selected Poems 1923-1985)

Whether oral or written, what is it about sharing our stories that makes them so important?  Storytelling, as several researchers suggest, is a powerful tool for patients and healthcare providers alike.  It provides the patient a way to give voice to the experience of illness and, in turn, to begin to confront their illness, questions of care and mortality.  There’s plenty of evidence from the significant body of work on writing and healing by James Pennebaker, PhD, showing that creating a story about one’s experiences in life can result in improved physical and mental health in many populations, whether written and verbal.   For example, A 2011 study cited in the Annals of Internal Medicine showed that a storytelling intervention produced substantial and significant improvements in blood pressure for patients with baseline uncontrolled hypertension as effectively as taking additional medications.   Moreover, research now suggests, the skills of storytelling,  can result in improved health communication between doctor and patient.

“Telling and listening to stories is the way we make sense of our lives,” according to Dr. Thomas Houston, lead author of the hypertension study.  “That natural tendency may have the potential to alter behavior and improve health.”  Interviewed after the study in a 2011 New York Times article, he said, “Storytelling is human.  “We learn through stories, and we use them to make sense of our lives.  It’s a natural extension to think that we could use stories to improve our health.”

 Their stories, yours, mine—it’s what we carry with us on this trip we take…we owe it to each other to respect our stories and learn from them.–Advice to a medical student by William Carlos Williams, physician and poet

Patient stories have begun to be recognized as an important aspect of the medical experience, thanks to the work of Rita Charon, M.D.  She created the term, “narrative medicine,” a medical practice using patient stories in clinical practice, research, and education as a way to promote healing.  The growth of expressive writing research ignited by James Pennebaker’s research also fueled the recognition that stories, written and shared, help us heal.

Stories offer insight, understanding, and new perspectives. They educate us and they feed our imaginations. They help us see other ways of doing things that might free us from self-reproach or shame. Hearing and telling stories is comforting and bonds people together….Being able to narrate a coherent story is a healing experience…. stories keep us connected to each other; they reassure us that we are not alone.–Miriam Divinsky, MD, Canadian Family Physician, 2007.

In the shock of a cancer diagnosis or the weeks of surgeries and treatments that follow, you may feel lost, even lonely.  You may feel as if you’ve even been robbed of your voice, that you have nothing to say.  But try to write.  It doesn’t matter, at first, if you do little more than rant, pouring out your emotions on the blank page, but gradually, you’ll find a story begins to emerge, and you begin writing more and more.  Writing helps you heal, and it helps you rediscover your life, one that is larger than cancer.

In my writing groups, it’s the stories of the cancer experience that first get written.  Yet, while cancer may be the starting point, as our weeks together continue, other stories emerge, ones about a person’s whole life–stories of  love, loss, family, childhood, the joys and sorrows that make each person uniquely human.  Writing  stories from other chapters of your life offers a way to understand and make sense of the whole life you’ve led, not just the chapter called “cancer.” Sharing them affirms your life, your legacy.  They say:  “This is my life.  This was what I experienced.  This is important to me.  It is why I’ve become the person I am.”

I never tire of the stories written and shared in my writing groups.  Everyone’s way of telling their stories are unique, and despite the common themes of a cancer diagnosis, those stories continue to humble and inspire me, even after nearly twenty years of leading expressive writing programs.   I remember them long after the workshops end, even after some lives are sometimes lost to cancer.  As I recall their stories, I see their faces.  I remember their lives.  “Death,” writer Jim Harrison wrote, “steals everything but our stories.” — (From:  Larson’s Holstein Bull, in From: “Larson’s Holstein Bull,” In Search of Small Gods, 2009)

It’s why your stories matter.  We are our stories.  They shape us and act as the lens through which we see the world. Through story, we make sense of our lives, reclaim our voices, and even learn our stories have the power to touch others’ hearts.  We create community out of shared story.  Cancer may bring people together to my writing group,  but it’s in the stories written and shared that we discover the glue that binds us together.

Stories—the small personal ones that bring us close as well as those of the larger world—foster compassion.  In the telling of our personal lives, we’re reminded of our basic, human qualities—our vulnerabilities and strengths, foolishness and wisdom, who we are…, through the exchange of stories, [you] help heal each other’s spirits. — Patrice Vecchione, Writing and the Spiritual Life

Whether big or small, extraordinary or ordinary, of illness or of health, laughter or sorrow, your stories matter.  Write them.

Writing Suggestions:

  • Begin with something simple, like “the moment I first heard the words, “you have cancer,” I…  Try remembering as much detail as you can from that moment:  the quality of light, where you were sitting or standing, the doctor’s voice, what you felt or said…
  • Try beginning with the first line of someone else’s poem, such as “As if your cancer weren’t enough…” (from “Guinea Pig, by Julie Cadwallader-Staub, Cancer Poetry Project, V. 1, 2001) or “The day I finished chemotherapy…”  (from “Reminiscence” by Ruth M. James, Cancer Poetry Project, V. 1, 2001) or “No.  I don’t want to hear about your uncle…”  (from “The Cancer Patient Talks Back,” by Molly Redmond, Cancer Poetry Project, V. 1, 2001)
  • Make a list of firsts:  the first kiss, first haircut, first grade, first friend, first dentist appointment, first time you walked home alone from school…    Write the story of a first.
  • Write one of your favorite family stories.
  • Write about a teacher, doctor or coach who first inspired you to do more than you thought you could.
  • Write about something that made you angry, sad, frustrated, or giggle…
  • Write about losing hair during chemotherapy or nausea or the infusion room.  Perhaps there’s a poem lurking there.
  • Write about something that always makes you laugh when you remember it.
  • Write about what it’s like to write.

The point is, the smallest thing can bloom into a story, take you to memories and events in your life that matter to you. Start there.  Set the timer for 15 minutes.  Write nonstop until it rings.  Then read what you’ve written.  Chances are, there’s more to write.  Try the same exercise the next day or later in the week.  Keep writing.  Your life, your stories matter.

 … in order to make you understand, to give you my life, I must tell you a story—and there are so many, and so many—stories of childhood, stories of school, love, marriage, and death…–Virginia Woolf

Read Full Post »

In one way or another, cancer impacts virtually all of our lives. On an individual level, it is a life-transforming experience that often challenges the mind, heart, and spirit of patients and family members as deeply—if not more deeply—than it challenges the physical body—Jeremy Geffen, MD, The Journey Through Cancer: Healing and Transforming the Whole Person, 2006

Cancer, or any other life threatening illness or trauma, changes you.  Not only is your life altered in different ways, even if you are pronounced “cured” or “healed,” you quickly discover that returning to the self, to the life you knew before cancer or trauma occurred, is virtually impossible.  Not only has your body been altered by treatment and surgeries, the way you think about yourself and your life has changed, whether you see yourself as “living with” cancer, “a survivor,” “in remission,” “a warrior”–as well as  how you experience people and situations that were part of your daily life before cancer.

You’ve suddenly been thrust into the necessity of revising the life you have known, the one you’ve been living.  Revision is not just reserved for writers in the process of creating a story or poem.  It’s a necessity for life.  Yet when you are challenged to change the way you live, it can be confusing and difficult to understand, let alone learning to accept some of the necessary changes in your life.  You’re thrust into a journey you wouldn’t have chosen to travel, but, as Mary Oliver describes in her poem, “The Journey,”

You knew what you had to do…

and the road full of fallen

branches and stones.

But little by little…

the stars began to burn

through the sheets of clouds,

and there was a new voice

which you slowly

recognized as your own

that kept you company

as you strode deeper and

deeper

into the world…

You knew what you had to do…

(In:   Dreamwork, 1994)

In an interview by William Young, appearing in a 1993 issue of The Paris Review, William Stafford was asked to comment on his choice of a title of one of his books about writing: You Must Revise Your Life.  “I wanted to use the word revise because so many books about writing make it sound as though you create a good poem by tinkering with the poem you’re working on. I think you create a good poem by revising your life… by living the kind of life that enables good poems to come about.”

Several years ago, after the death of my first husband and the years spent being a single mother, I felt I was ready to unearth the story of that particularly painful and traumatic chapter of my life.  I began by starting a memoir, one I ultimately decided to turn into a novel.  I sent the manuscript to a few respected writers for review, and as it needed, revised multiple times.  Yet it took several months of rewriting and revision to acknowledge that I was still skating on the surface of the story, overly concerned with descriptive details, grammatical nits, and developing a rounded protagonist, who was, in real life, me.  (I never succeeded with her–my protagonist was just too “good.”)  The writing dragged on, through four complete revisions—or rather, revisions I thought were complete.  Yet something wasn’t working. The story was no longer my story, nor was it the real story “It’s become a fairy tale,” I complained to my writing buddies, and I put the novel aside in frustration.  I’d lost sight of my story, and in the process, had not written myself “into knowing,” as author Patricia Hampl once said about the writing process.  I was farther away from the truth, the real meaning in my story than ever.  I put the manuscript aside and faced the fact that the real revision was one of coming to terms with my life–before and after the trauma:  what, in me, had changed and how had it changed how I now approached the life I had now.  I had to do a complete re-visioning of my story.

I’ve been working on my rewrite, that’s right
I’m gonna change the ending
Gonna throw away my title
And toss it in the trash
Every minute after midnight
All the time I’m spending
It’s just for working on my rewrite…

(“Rewrite,” by Paul Simon, from the album, So Beautiful or So What?” 2011)

I discovered that there was much more to the process of writerly revision as Simon’s lyrics suggest, getting beyond the “happy” ending and digging deep for the meaning of those events in my life.  Simon hints at that in his song, and it’s likely one of the reasons his “Rewrite” lyrics were published in a recent edition of The New Yorker under the heading, “Poetry.”  Listen carefully, and you realize the real story is of a Vietnam vet who’s had hard times, and his rewrite is an attempt to create a happy ending for himself.

I’ll eliminate the pages
Where the father has a breakdown
And he has to leave the family
But he really meant no harm
Gonna’ substitute a car chase
And a race across the rooftops
When the father saves the children
And he holds them in his arms…

We all fantasize about how our lives might have been different, “if only if I’d done ___ instead of …,” but that’s the stuff of dreams and wishes, of fiction instead of reality.  Happy endings aren’t like the ones we remember from childhood fairy tales.  Life–cancer, loss, trauma, hardship–these events challenge us to revise our lives, to learn to honor our uniqueness, even our struggles and losses, and learn from them.  Only then can we truly begin a new script for the life we have ahead of us.

At a breast cancer rally she rises

Above sixteen positive lymph nodes

To tell the world that cancer is a wakeup call

That resonates to the cell level…

Cancer is not a gift but a lesson

Full of seeing now and living presently.

(“The Lesson, by Judy Rohm, in The Cancer Poetry Project, V.1, 2001)

      …”cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.”  — Alice Hoffman, NYTimes, August 2000.

Cancer, any serious illness or trauma can teach us to revise our lives in a way that we are more “alive” to the world, to paying attention to what’s in front of us, discovering gratitude in slowing down and being fully present to our daily lives.  Yes, we have changed, but we still have the opportunity to be considered in our choices, to make certain that however long our lives may be, we learn to live fully and with gratitude for each day we’re given.

As I write this post, I recall the first weeks several years ago, after I’d finished my doctoral research (a study of instructor thinking during instruction in a professional school of landscape architecture).  One of my “subjects,” a particularly gifted instructor wrote a short account of his experience in the study.  Entitled “The White Rat Talks Back,” he began his narrative with an old Fleishmann’s margarine advertisement, “I’m just a guy … who had a heart attack.  I’m okay now, but I learned a lot.”

“I’m okay now, but I learned a lot.”  Well, as Frank Sinatra once sang, “that’s life (that’s life)…  We all have chapters–those difficult experiences–that challenge us.  Some we remember fondly; others are the ones we don’t wish to repeat, but like it or not, we have to face the fact that our lives have been altered in profound ways,  even in ways we never imagined nor wanted, and we are left to re-consider and revise the ways we live from here on out.   How have you challenged to revise your life, your way of seeing the world, by cancer, by any life hardship?

 

Writing Suggestions:

  • Imagine you had the power to rewrite your life, as the subject in Paul Simon’s song, “Rewrite” dreams of doing. What would be your “happy” ending?
  • What have you learned from the painful chapters of your life?
  • As you look back on the difficult times in your life, before cancer and after, how have you revised your life?  What changed?  What didn’t?

 

 

 

 

 

 

 

Read Full Post »

With only the pages of People

and Time for amusement, who would not

feel afraid?

(From:  “In the Waiting Room,” by David Bergman,  Poetry, December 1986)

We are all forced to wait more than a few times in our lives. Those toe-tapping, check-our-wrist watches moments are minor irritations that we all endure.  We wait in lines for tickets or to get through security at the airport.  We wait to be served in restaurants or for a train in the subway station.  We wait for calls or letters from employers, editors or loved ones, for acceptances to schools, or the results of medical tests.  And we wait in hospital or physician’s waiting rooms for the appointment scheduled well over an hour earlier, thumbing impatiently through outdated magazines and checking the clock a dozen times, unable to concentrate on much of anything but the waiting.

Three of my mornings last week were spent in hospital waiting rooms.  I sat with other patients and waited for my name to be called for tests, blood work, and physician consultations.  Thankfully, most of my appointments were completed without too many delays, but occasionally, as I experienced earlier this summer, the time spent in a waiting room can be extreme, testing my patience, ability to “hear” what a physician says by the time he finally walks into the examination room, or undermining the sense of confidence I might have felt about his medical advice and conclusions. In that instance, the impact of an extremely long period of waiting was so extreme I requested a second opinion, which occurred last week.  Thankfully, this physician was on time, listened patiently and took the time for a thorough assessment.  I was armed for a wait, however, arriving with a novel to read and a notebook to write in.

Dr. Sheila Wijayasinghe, writing in a recent Globe and Mail column, offered a physician’s perspective on the time patients’ spend waiting.  “No doctor likes running behind,” she wrote, “and most try to keep on time out of respect for patients’ schedules and busy lives. But even with the best of intentions, we end up running behind due to unpredictable circumstances. She offers examples of the common reasons that lead to patients’ waiting.

.  Getting a call from a specialist that a patient has been admitted to hospital.

.  Urgent walk-in patients arriving who need to be seen quickly

.  A patient arriving late for her appointment

.  A patient with a condition requiring additional time

.  And in some cases, double or triple booking in an attempt to accommodate all patients needing to be seen.

Yet, no matter the reasons, there is a kind of waiting no one finds easy, the kind of waiting punctuated with worry and sleepless nights, waiting that may become a matter of life and death. Anyone diagnosed and living with cancer knows this kind of waiting intimately.  In the course of treatments and recovery, waiting can be torment, as writer Susan Gubar describes in “Living With Cancer: Hurry Up and Wait.”

As a cancer patient, you endure “waiting for a doctor, waiting for radiation, waiting for the delivery of chemotherapy drugs, waiting through interminable infusions or transfusions, waiting for a scan or a biopsy, waiting for the results of a scan or a biopsy, waiting (sometimes starved and unclothed on a gurney in a hall) for surgery… Hurrying up to wait is, of course, the fate of most patients, whether or not they have cancer and no matter how impatient they may be. But for cancer patients, waiting entails being enveloped in heightened fears about harmful protocols and the difficulty of eradicating or containing the disease. While I’m waiting, who knows what appalling cells are conspiring within my body to destroy my being? (In:  “Well,”  New York Times, December 3, 2015)

A 2011 research study reported in The Annals of Surgery found “wait times for cancer treatment have increased over the last decade… potentially resulting in additional treatment delay…Although cancer incidence rates have seen modest declines during the last decade, the overall number of patients diagnosed with a solid organ malignancy has been increasing, likely due to an increasing elderly population.” What’s more, waiting can have more negative impact that simple frustration.  An extended interval from diagnosis to treatment, the researchers concluded, adds to patient anxiety, leads to gaps in care, and perhaps affects disease progression.

Participants in my expressive writing groups often express frustration in the amount of waiting involved to be tested and then receive the results of those tests.  If you’ve been faced with the anxious period between any test for cancer and its results, Muriel Fish’s poem, “In Cold Dreams Before Dawn,” captures the  how waiting can escalate fear and worry:

…The radiologist

Enters, snaps the x-ray film into a wall unit lit with

brisk efficiency…

…the bite of the biopsy needle reminds me

most lumps are benign…

…I wait, remembering long

Bittersweet days sitting with my mother and sister,

each with their own small malignancy and dead within three years.

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

Robert Carroll, MD,  a UCLA psychiatrist, utilizes poetry to help patients cope with illness and struggle.  In a 2005 paper, “Finding the Words to Say It:  The Healing Power of Poetry,” he explored how poetry can help us find the words to express trauma, illness, death and dying.  “What Waiting Is,” one of the featured poems, captures, for me, the emotions that often accompany the waiting room experience of parents, spouses, and family members.

We sit on the bench in the hospital corridor
next to the cafeteria, and we wait.
You know what waiting is.
If you know anything, you know what waiting is.
It’s not about you.
This is about
illness and hospitals and life and death…

In matters of death and dying, we may be forced to do little but wait while our emotions run rampant.  Finding ways to express pain and emotion by writing or discovering meaning in others’ poetry and prose can have therapeutic benefits.  Certainly, it has for me.  Poetry has helped me put words around tumultuous emotions more than once, but this poem, “What Waiting Is,” captures the emotions I felt in the hours preceding the death of my parents, one from lung cancer and the other from Alzheimer’s.

In the bathroom you look in the mirror.
What do you see?
Your father’s sad face?
Your mother’s eyes?
You catch the water cupped
in your thickened hands, splash it on your face,
and hope against hope you can wash it away—
the aging brown spots, the bags,
the swelling truth of waiting—…

you get home to see the light
flash on your answering machine…

you push the button,
and it’s your sister’s voice,
but it’s choked,
and she can’t speak.

 Waiting never seems to get easier, although you may, as I have, become more “seasoned” at doing it as your time in waiting rooms increases.  But there are inevitable times, particularly in the midst of any serious illness, trauma or suffering, that the waiting we must do seems endless.  Perhaps learning to wait, like it or not, is a life lesson we are forced to endure–and to master.

I recall the words of T. S. Eliot in The Four Quartets, “I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing; wait without love, for love would be love of the wrong thing; there is yet faith, but the faith and the love are all in the waiting…”  (East Coker, The Four Quartets, 1940)

The faith and the love and the hope are … in the waiting.  These words make me reconsider why life makes us wait.  I am still learning, even after all these years, to accept what I cannot control, to let things unfold as they will.  “This is life.  You learn to wait.”

Writing Suggestions:

Like you, I’ve sat in many waiting rooms, worried and anxious, as a child or spouse underwent surgery, or waited for the call I dreaded but knew would come as my parents were dying, and waited for the results of echocardiograms or a biopsy.

  • What has been your experience of waiting?
  • Think about all the times you’ve waited for something or someone, whether in a medical waiting room or at another time in life, whether worrisome, painful or even humorous (once, of course,  the waiting ended!)
  • Write about what it’s like to be caught in the “helplessness” of waiting.

 

 

Read Full Post »

Earlier this morning I participated in a conference call with a group of medical professionals in the Canadian Heart Failure community, a group tasked with creating a joint paper on Heart Failure care guidelines in Canada.  I was invited to represent a patient perspective, but admittedly, I was taking copious notes in a conversation that, like most specialties, has its own lingo–acronyms and terms unique to the field but for me, akin to a foreign language.  At the conclusion of the call, the group was divided into sub-groups, each tasked with writing and submitting questions to be included in a national survey on heart failure treatment, care and transitions.   I was assigned to explore and formulate questions dealing with transitions for heart failure patients.

Ironically, just last week, I’d been part of a survivors’ retreat, “Transitions,” at Gilda’s Club here in Toronto, where I led a writing  workshop on the process of transitioning from patient to “survivor.”  After this morning’s call ended today, however,  I wondered how “transition,” in heart failure terms, differed from the way in which it was used in our workshop last week.

At the retreat, we used it synonymously with becoming a cancer survivor–someone who has been, if not cured, given a number of years of being “in remission.”  We all, of course,  still hope for a cure for cancer,  and new immunotherapies have given us more hope one will be found.  Yet heart failure, by contrast,  is a condition that isn’t cured by drugs, rather they are used to improve heart functioning for as long as possible.  Inevitably, the prognosis for heart failure patients has the upper hand, and the heart continues to weaken.  As I was assigned to explore questions for the category of “transitions” in a proposed model for heart failure care in Canada, I couldn’t help but think about the different implications what “transitions” between the way we’d used it a week ago at Gilda’s club and how, in this new effort to define a model of care for heart failure, a somewhat different meaning is implied.

Heart Failure, which I have, is a growing — and all too silent — epidemic according to Dr. Paul Fedak, a cardiac surgeon at the University of Calgary.  He explains: “Heart failure is the end result of all cardiac disease.  You get heart failure from everything that goes wrong with your heart–all roads lead to heart failure.”  While cancer remains the leading cause of death in Canada, heart disease is the leading cause of premature death for women.  In the US,  heart disease is the leading cause of death for both men and women with cancer running a close second.    Yet I cannot help but consider the number and variety of support programs for cancer patients that are far more developed, available and varied in both countries. than resources for heart disease patients.

I’ve been part of the cancer community for nearly twenty years, and gratefully so.  When asked to introduce myself on this morning’s call, I said that I was someone whose practice has been focused on individuals living with cancer by supporting their emotional, spiritual and creative well-being through encouraging the writing and sharing of their illness stories.  The thing is that the prevalence of a variety of supportive care programs, such as we have in the cancer community, are scant by comparison in the heart failure community, although there are some recent efforts, like the HeartLife Foundation of Canada, working to provide information and resources as well as create a sense of community through social media.

I have come to realize now that my work with cancer patients and survivors has been my greatest teacher in  understanding the impact of serious or terminal illness on our lives.  My personal experience with cancer was not a  life threatening one.  But the negative side effect of my treatment didn’t make itself known until my diagnosis of heart failure eight years later.   It wasn’t until that incident,  perhaps, that I understood how the fear of premature mortality that can inhabit anyone’s mind who is diagnosed with cancer.  Heart disease and stroke kill seven times as many women as breast cancer, for example, and in Canada, a woman dies of heart disease in Canada every 20 minutes! According to the Canadian Heart and Stroke Foundation, women are five times more likely to die from heart disease than breast cancer. But it turns out that there are issues in research and treatment of heart disease and failure when it comes to gender.  Two-thirds of heart disease clinical research still focuses on men.  “Women are under-researched, un-diagnosed and under-treated, undersupported and under aware,” according to Yves Savoie, CEO.   “It’s unacceptable, and the situation has got to change–we need to smash this glass ceiling.”

Ironically, my cardiologist believes my heart failure was likely the result of radiation therapy I received for DCIS in my left breast eighteen years ago.  I was given “gold standard treatment,” as my oncologist described it, yet I didn’t feel like I was truly a cancer patient.  And I wasn’t, not really, because a short time later, DCIS was reclassified to “pre-cancerous,” so it was only after I collapsed  while walking my dog in December of 2008 and was diagnosed with heart failure, that I truly understood the words of Alice Hoffman, novelist, reflecting on her cancer experience:        

“Cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.” (“Writers on Writing, “New York Times, August 2000).

Cancer treatments have gotten progressively more refined and better, and now with new advances in immunotherapy, there is even more reason to have hope for a cure.  Heart failure treatment continues to improve as well, although it isn’t about cure as much as it is in medication that can help to improve, for as long as possible, the heart’s functioning,  but the slope is still gradually downhill, and one’s “destiny” is never far from consciousness.

What strikes me now, as I continue to go to my cardiology appointments, have tests, receive new or increased medications and talk with my cardiologist (who is truly exceptional) is how solitary a journey having heart failure has felt like to me when I  consider the supportive care and community organized around  individuals living with cancer.

Or have I been in denial?  Perhaps, to some extent, but for the seven plus years I was being treated for this condition in California, other than one “educational” workshop on heart failure, which failed to do much to enlighten me, I never encountered or was told about other programs supportive to heart failure patients.  While I read research studies on heart failure, I do it in small doses, because my sleep is woefully interrupted by the facts and statistics.  Yet I am gratified to be pulled into action concerning the condition I and so many others have, or as my cardiologist would call it, “engagement.”  In fact, at my very first appointment with her back in December of 2017, she asked, “Do you want to just be retired or do you want to be engaged?”

I was perfectly clear.  “Engaged,” I said. “I have no idea what just being retired would look like.”

“Well, we’re going to get you engaged,” she said emphatically.

And she did.  Four months later, I sat in a group meeting on Heart Failure Access in Canada, all the while wondering how on earth I could possibly contribute to the discussion in any meaningful way.  Yet perhaps now I’m realizing I can be helpful in offering a patient perspective as the committee works  to define an optimal model for Heart Failure Care in Canada.  And that has a lot to do with the past 18 or so years of facilitating expressive writing groups for men and women with cancer.  A vocation, I’ve said, that has always been dear to my heart…little did I realize how much.

Perhaps all that I have learned, cherished and experienced as part of the cancer community, and most of all, from the honesty and vulnerability of those who have come to write and share their stories and lives with me in the writing groups, will help be me a better patient and participant in this community of cardiologists, nurses and heart failure patients.

And perhaps I won’t feel, as I have in the past, as lonely in the journey of being a woman living with heart failure.

My outlook is it’s not how long you live, it’s what you put into your life.Simon Morgan, 58, ( dilated cardiomyopathy;  heart transplant patient, UK)

Writing suggestions:

  • Cancer or any serious illness can be a great teacher.  What have you learned from cancer or other major hardship?
  • In your cancer experience, think about the kinds of support and help you were given.  What was most helpful?  Describe it and explore why you found it as valuable as you did.
  • Think about transitions–the many times in your life you’ve experienced that “in-between” period during change from one part of your life to another.  What meaning does “transitions” imply for you?  Why?

Read Full Post »

Older Posts »