Writing Through Cancer

If the only prayer we say in our lifetime is ‘thank you,’ that would suffice.”                 German philosopher, Meister Eckhart

In a time when we are constantly confronted with world crises–the devastation of Nature’s wrath, global warming,  poverty, famine, war or terrorist attacks on innocent people, or living with a life- threatening illness like cancer–life may seem overwhelming, and it can it be difficult to remember or feel gratitude. Yet every time I watch the evening news, there’s a story, an example, of individuals whose lives have been turned upside down by crisis or tragedy expressing gratitude for whatever help, hope or unexpected acts of kindness they discover among the rubble of their lives.  It always gives me pause for thought–a little nudge to not “let the turkeys” get me down.

Last night, tired from a busy weekend, I restlessly flipped through channel after channel of football, before settling on the final segments of CBS’s 60 Minutes.  I’m glad I did.  Senator John McCain, recently diagnosed with glioblastoma, one of the most virulent and deadly forms of brain cancer, was being interviewed by broadcast journalist, Leslie Stahl.  McCain,  a POW during the Vietnam War, is no stranger to suffering, yet his spirit and determination–qualities that likely helped him survive the torture and hardship in a POW camp–are as strong as ever.  When his doctors confirmed his cancer diagnosis, he responded by saying,  “I understand. Now we’re going to do what we can, get the best doctors we can find and do the best we can.’ And, at the same time, celebrate with gratitude a life well lived.”

McCain begins his day with chemotherapy and radiation before he goes to work in the Senate, explaining this to Stahl  as being “more energetic and more engaged as a result of this because I know that I’ve got to do everything I can to serve this country while I can.”  The senator admitted that sometimes, yes, he feels fear about what may happen, but he reminds himself that he has experienced a great life and celebrates it with gratitude.  “I am so grateful,” he remarked near the end of the interview, “every night I am filled with gratitude.”

Gratitude, as McCain likely knows well,  is good for us.  A sizeable body of research has been conducted on the positive effects of gratitude, including its emotional and interpersonal benefits.  For example, research suggests that a may have emotional and interpersonal benefits.  Other studies show that those who keep gratitude journals on a weekly basis report fewer physical symptoms, feel better about their lives, and are generally more optimistic.  Grateful individuals also report more positive connections with others, satisfaction with their lives, and demonstrate a greater tendency towards empathy and generosity toward others   (McCullough et al, 2002- 2003).

“…celebrate with gratitude for a life well lived.”  McCain’s interview gave me pause.  I’ve been hovering on the brink of feeling sorry for myself in the wake of a computer crash, the dull pain of an arthritic knee, and a host of bureaucratic frustrations as I re-settle in Toronto.  Little by little, things continue to improve, but it doesn’t take much some days to find anger, worry or frustration seeping into my thoughts and coloring my mood.  I know how powerful gratitude is, but despite that, I am challenged, some days, to  consciously re-direct my thoughts to the things in life that keep me going, provide solace, joy and gratitude.  In a world so fraught with divisiveness, crises, suffering and fear, gratitude becomes all the more important.

In normal life we hardly realize how much more we receive than we give, and life cannot be rich without such gratitude. It is so easy to overestimate the importance of our own achievements compared with what we owe to the help of others.
Dietrich Bonhoeffer―Letters and Papers from Prison

Gratitude was on my mind last week when I met with the executive director of Toronto’s Gilda’s Club  just as it had been two weeks earlier, when I met with the executive director at Wellspring, a cancer support services organization in the greater Toronto area.   The services and support offered to those living with cancer encourages gratitude–even in the midst of something as devastating as cancer.  I was reminded that while I have loved returning to this city, I have greatly missed the expressive writing groups I led for so many years in California, and I was grateful that both Toronto organizations welcomed me and having an opportunity for us to learn about one another.

As I described my  expressive writing programs, I recalled how many years earlier, when I first came to as a recently widowed single parent, how very raw and emotional I had been with grief.  I began seeing a therapist, and as the sessions progressed, I cautiously began to bring a poem I’d written –poems that spoke to what I was feeling, struggling with, trying to resolve.  A routine developed between us, one that would influence not only my healing, but the workshops I would later lead for cancer patients.   At the beginning of the session, I read the poem aloud then gave my therapist a copy.  He never questioned nor attempt to interpret what I had written.  Instead, he responded only with gratitude, just two words, “thank you,” that did more, in those vulnerable weeks, to build trust, self-affirmation and buoy my spirits than, perhaps, anything.  To this day, when someone volunteers to read aloud in my writing groups, I respond immediately with those same two words, “thank you,” so powerful is the gift of gratitude to the human spirit.

So today, I focus on gratitude.  I’m grateful for the first signs of autumn in the maple trees outside our windows, for the companionship and conversation with old friends over a Sunday lunch, for the latte my husband brought me from the cafe across the street this morning.  But in particular, I’m grateful I paused to stop flipping television channels and hear the interview with Senator McCain.  It was a well-timed “listen up” to help me right my sagging mood at the end of a trying week.

Gratitude is infectious.  Try it on for size today or this week if you find yourself slipping into self-pity or sorrow.  Take a walk.  Remember what you have that gives you joy.  Pause at a tree, its colors turning in the first days of autumn.  Remember to say those two simple words, “thank you,” to a loved one, the cashier at the market, the awkward teenager who suddenly remembers the lesson his parents have tried to teach him and opens the door to let an elder person pass through before him.  “Thank you.”  It’s a little infusion of gratitude.  And when the world gets us down, it’s all the more important we stop and remember what we are grateful for.

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…

 

(From:  “Starfish,” by Eleanor Lerman, in: Our Post-Soviet History Unfolds, 2005)

 

Writing Suggestion:

Is life getting you down?  This week, take some time to write down one thing you are grateful for each morning.  That’s it:  just one.  As the week progresses, return to those few sentences and reflect on the power of gratitude.  Did anything change?  If so, how?  If not, explore that.  Write a short poem or narrative on gratitude or the power of having someone say, “thank you.”

Pick yourself up…

Take a deep breath…

Dust yourself off                      

And start all over again.

Pick yourself up…

(From “Pick Yourself Up,” lyrics by Jerome Kern & Dorothy Fields)

These are the words from a song often played by my mother when I was a child, often when I suffered some youthful defeat.  I can still hear Nat King Cole’s mellow tones reminding us that we all encounter difficulties, but must find a way to go on:  “Will you remember the famous men/who had to fall to rise again/They picked themselves up/ Dust themselves off/and started all over again.”

It’s easier said than done, as we’re reminded by the devastation suffered by thousands of Texans in the path of Hurricane Harvey this past week.  Recovery, whether from natural disaster, trauma, addiction or cancer is no small feat.  A look through the dictionary defines recovery as “a return to a normal state of health, mind or strength; the process of regaining possession or control of something stolen or lost.”  And yet, so many aspects of our former lives, especially in the aftermath of a hurricane, tornado, fire, cancer or traumatic losses, might never be fully regained.  How then can we understand the process of recovery?

Right foot, left foot, right foot, breathe.—Anne LaMott

My heart ached as I watched the news this week and witnessed the devastation caused by Hurricane Harvey.  It’s the worst hurricane to make landfall in the United States since the record-breaking 2005 hurricane season which included Katrina, Rita and Wilma (Source:  Wikipedia).  The physical destruction and economic losses are staggering, and it will take months, perhaps longer, for people to rebuild and recover.  And yet, the speed of recovery matters.  Because of the economic and emotional pain and deprivation suffered by families and communities, the effects of these natural disasters can be long-lasting.

It’s not just the physical devastation of a disaster like Harvey.  The emotional costs after a natural disaster like a hurricane, flood, tornado or earthquake are great.  People feel stunned and disoriented.  Feelings are raw and unpredictable; repeated and vivid memories of the event can create physical responses such as rapid heartbeat, sleeplessness or loss of appetite.  Interpersonal relationships can be strained.  These emotional stresses can continue long after the event.  Even in post-disaster rebuilding, people and communities do not resume “life as it was before.”  Lives are forever altered, and gradually, a “new normal” emerges.

Recovery has similar challenges, whether in the emotional suffering of survivors of natural disasters or individuals experiencing cancer, trauma and sudden, tragic loss . The process of recovery doesn’t promise smooth sailing.  Whether a hurricane or cancer treatment and surgeries, physical symptoms like fatigue, weight changes, sleeplessness or change in appetite can accompany us during recovery, as Dana Jennings, a prostate cancer survivor and New York Times writer, described:

I’m recovering well from an aggressive case of prostate cancer; I haven’t had any treatment in months, and all my physical signposts of health are point in the right direction.

Still, I’m depressed.–Dana Jennings (“After Cancer, Ambushed by Depression, NY Times, Sept. 29, 2009)

He describes another aspect of recovery:  The troublesome physical symptoms during the process are often coupled with emotional responses: depression, guilt, anger, fear of recurrence, or the frustration of dealing with loved ones as you encounter a changed life or an altered body.  Whatever our new normal is going to be, it takes time, more time that we expect, and the process of getting there can be challenging.

I’m exhausted, unfocused and tap my left foot a lot in agitation.  I don’t much want to go anywhere…and some days I can’t even bear the thought of picking up the phone or changing a lightbulb…

Partly, I think, I’m grieving for the person I was before I learned I had cancer.  Mortality is no longer abstract, and a certain innocence has been lost.—Dana Jennings

Recovery is a process that, like it or not,  happens slowly.  There are days, even weeks, you may feel you’ll never make it through to a more “normal” life, yet research shows us that the majority of people are resilient and able, over time, to bounce back from tragedy.

And you come through.  It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.—Anne LaMott

How do you navigate through the process of recovery?  The American Psychological Association offers advice, steps you can take to regain emotional well-being and a sense of control after a traumatic event like a natural disaster, sudden loss, or life threatening illness:

• Give yourself time to adjust. It’s a difficult time in your life; allow yourself the time to mourn the losses you’ve suffered.
• Ask for support from people who care about you and who will listen and empathize. Social support is a critical component to any recovery, whether a natural disaster or a serious illness.  Family and friends can help, so, perhaps, can a support group.
• Communicate your experience. As Dana Jennings said in his 2009 article, “I believe in and trust in the healing power of the stories that we tell each other.”  Talking with friends, keeping a journal or expressing yourself in another creative activity can be healing.
• Find a local support group led by professionally trained and experienced professionals. The group discussion can help you realize you are not alone in how you feel and react.
• Engage in healthy behaviors, like eating well balanced meals and getting plenty of rest.
• Establish (or reestablish) your routines, like eating at regular times, sleeping and waking on a regular cycle, or engaging in daily exercise, for example.
• Avoid making major life decisions. Big and important decisions are stressful enough on their own, and they are much harder to take on when you are recovering from disaster or serious illness.

All of us experience some kind of life challenge, a tragedy, loss, serious illness or even a natural disaster in our lives.  In their wake, we may feel as if our lives will never be the same.  And it’s likely they won’t, because we will be changed by what has happened to us. Yet our lives will go on, and there may be lessons gained from the suffering.  Gail Caldwell summed up her lessons in her memoir of friendship and loss of a dear friend: “I know now that we never get over great losses; we absorb them, and they carve us into different, often kinder, creatures.”  (Let’s Take the Long Way Home:  A Memoir of Friendship, 2010).

We are changed by the difficult chapters in our lives, and in many ways, perhaps, for the better, as Caldwell suggessts.   I have often remarked how my encounter with cancer was so early and treatable, I felt like a “phony,” and refused the label of “survivor.”  I doubted I truly understood the emotional roller coaster so many cancer patients endured until later I collapsed on the pavement a few years later and was taken to the hospital by ambulance to be diagnosed with heart failure. For weeks afterward, my emotions were not only unpredictable, but colored by a fear of early mortality –something that crept into my thoughts without warning.  I’d be in tears, lying awake with fear as my companion.  It took time and support from my doctors, family and friends to return to a “normal” way of living, but at the same time, I was learning more about emotional recovery that informed my practice with cancer patients and survivors.

During those first unsteady months, I came across a poem by Ellen Bass,  one that affected me so deeply,  I framed it and hung over my desk. It served as a daily reminder that while my life had changed by the unexpected diagnosis and treatment for a weakened heart, I could take steps to lead a long and relatively healthy life.   Here’s the poem–it’s one I often return to and read in my writing groups for cancer patients.

The Thing Is

to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.

(By Ellen Bass, From Mules of Love. © 2002)

Writing Suggestion:

Yes, I will take you/I will love you again.  Try using Ellen’s words as the prompt to describe a time when your life was devastated or turned upside down by an unexpected loss, tragedy or illness.  What helped you recover and heal from that event?  What did you learn about yourself, and your life as a result of it?

There are many good reasons for writing that have nothing to do with being published.  Writing is a powerful search mechanism, and one of its satisfactions is that it allows you to come to terms with your life narrative.  It also allows you to work through some of life’s hardest knocks—loss, grief, illness, addiction, disappointment, failure—and to find understanding and solace.  –William Zinsser (“How to Write a Memoir,” In:  The American Scholar, Spring 2006.)

Many years ago, I attended a summer creative writing workshop led by Pat Schneider, author of Writing Alone and with Others. Still numb and disbelieving from completing a seven-week regimen of radiation for early stage breast cancer, I’d signed up for the workshop at the urging of a dear friend.

The first morning, I sat in a circle of men and women feeling a wave of uncertainty.  Why was I there?  What was I going to write?  I half-listened as Pat introduced the workshop, my notebook open and waiting.  “Tell me something I can’t forget.” she said, quoting a line from a Tess Gallagher’s poem, “Each Bird Walking,”” in which the female narrator asks her lover to  “Tell me… something I can’t forget” (lines 50-51), and he responds by telling her how, as an adult man, he had the task of bathing his dying mother.  (From:  Willingly, 1984)

Tell me something I can’t forget.  I drew a blank.  What in my life might be memorable to another?  I had only a few minutes to write, so I began with what was most accessible: childhood memories, humorous stories told and re-told at family gatherings.  It would take nearly a full week of writing before I opened the door to my experience of cancer, and while I didn’t think of myself as a cancer patient or survivor, so treatable was my diagnosis,  I began to understand how cancer—even early stage—had already altered my life.  From that point on, my writing opened and deepened into the life experiences that had defined and changed me as a person.

“A patient is, at first, simply a storyteller…a narrator of suffering—a traveler who has visited the kingdom of the ill.  To relieve an illness, one must begin, then, by unburdening its story”– Siddhartha Mukherjee, The Emperor of Maladies: A Biography of Cancer (p.46).

“Decay is the beginning of all birth,” Kat Duff remarked in her book, The Alchemy of Illness, 2000). Duff was writing out of her experience with CFIDS (chronic fatigue and immune dysfunction.  Writing out of a cancer diagnosis or any significant and painful life experience can help repair the damage done to your lives, to your sense of who you are, or explore the disrupted futures you might face.  Writing together, as those in my expressive writing groups do, allows you to tell your stories and share your experiences.  We are our stories, and in the act of sharing them, we affirm our uniqueness and discover what is most meaningful. “I did not want my questions answered,” Arthur Frank wrote, describing, his illness in At the Will of the Body.  “I wanted my experience shared.”  In doing so, we remember who we were, and we learn who we are becoming.  Cancer–or any significant or painful life event–changes us and, perhaps, has the capacity to “remodel us,” as poet Jane Hirshfield said, “for some new fate.”

 In my experience, ill people become more themselves, as if once the excess was stripped away only the truest core of themselves remained… An insightful, experienced oncologist told me that 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–Alice Hoffman (In: “Sustained by Fiction While Facing Life’s Facts,” NY Times, August 2000.)

Hoffman wrote for during her ten months of cancer treatment to find “a way to make sense out of sorrow and loss.”  Indeed, to be healing, writing demands you examine the tough chapters of your life, learn from them and take that knowledge into your present life.  “Recovery is only worth as much as what you learn about the life you’re regaining,” sociologist and cancer survivor Arthur Frank wrote in his memoir, At the Will of the Body.  It’s not just cancer that teaches us.  As Hoffman notes, any momentous, challenging chapter of our lives has the potential for significant learning.

I am the only one who can tell my story and say what it means.– Dorothy  Allison

Writing as a way of healing isn’t just a process of pouring your sorrow and pain on the page.  To truly learn from your experiences requires something greater of you–the courage, as Maxine Hong Kingston tells the war veterans who write with her, to “tell the truth.”  Writing honestly requires courage.  It may seem difficult at first, because you have to be willing to dive deep beneath the surface of the events to do some hard soul-searching.  You may begin with cancer, but invariably, you find yourself going deeper into your life and the events that shaped you, old wounds that have yet to heal to discover the truth of your experience.   It’s then that the potential for healing begins.

To relieve an illness, one must begin, then, by unburdening its story.  Cancer is rarely the whole story, but it often leads us to the stories and experiences in our lives that matter most.  What is the story you want to tell?

Writing Suggestion:

• Begin with Tess Gallagher’s line, “Tell me something I can’t forget,” and begin writing freely, without stopping for fifteen minutes.
• When you’re finished, re-read it.  What stands out?  Use a yellow highlighter to mark those passages.
• Use the one highlighted phrase or sentence that most grabs your attention and begin again.  How does the second version differ from the first?  What insights do you discover?

Write hard and clear about what hurts.  – Ernest Hemingway