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Archive for the ‘writing for wellness’ Category

“Why is loneliness so toxic?”  It’s the question posed in a 2018 headline from  an article by Wendy Leung in the Health section of The Globe & Mail, Canada’s national newspaper.  Loneliness, according to Leung, in the context of cancer or any debilitating illness, is common. She describes a 2107 research study conducted  by a team at Rice University, which studied loneliness among ill people.  The findings suggested that “loneliness puts people at risk for premature mortality and all kinds of other physical illnesses.”  Why?  It’s a source of stress, but perhaps even more importantly, “a sense of being cared for and loved is a crucial factor in our well being.”

Loneliness often accompanies  cancer diagnosis and treatment.  Lisa Masters, living with metastatic breast cancer, offered a poignant description of the kind of loneliness she experienced in a 2014 Huffington Post article:

I am by nature an optimist. I am strong. I usually keep the sadness of myself to myself. I tell you that I’m not terminal and that I believe a cure will be found in time. I so want that to be true. I have Stage IV Metastatic Breast Cancer.

Today I write about a subject that I don’t often speak of, nor even give into its darkness very often.  Today I am lonely.  I wonder how many of you who also have Stage IV cancer are lonely.  I can’t be alone. I know I have my friends and my family who love me. They would do anything I needed them to do. All I need to do is ask. But, they really do not understand how alone someone with cancer can often be…

Today… it’s dark, it’s raining and I feel the loneliness of my cancer.  

So why is loneliness so toxic?  According to Ruth Livingston, PhD, founder and direction of Living with Medical Conditions, writing in a 2011 Psychology Today article, “Curing the Loneliness of Illness:

Being lonely can itself be dangerous to one’s health. Loneliness can double a person’s chances of catching a cold and, worse, lonely people are four times more likely to have a heart attack and, once they do, four times more likely to die from it…Further,… loneliness has an effect on the immune system: …it reduces antibody production and antiviral responses, protective against health risks. Loneliness, then —all alone — is a hazard. 

Summarizing the analysis of 70 studies on loneliness conducted at Brigham Young University,  Dr. Veronique Desaulniers reported that feelings of loneliness can increase an individual’s chance of dying by 26%.  Why?  Loneliness creates is stressful, and overtime, may lead to long-term stress, the “fight or flight” reactions that can have negative impact on our immune system functioning.

 

MacMillan Cancer Support, based in the UK, estimated loneliness put cancer patients’ recovery at risk, finding that cancer patients who are lonely are three times more likely to struggle with treatment plans than those who aren’t lonely,  skipping treatment appointments, not taking medications as prescribed, refusing certain types of treatment or skipping it altogether.   Commenting on the research, Ciaran Devane, CEO at MacMillan Cancer Support said, “We already know loneliness may be as harmful as smoking, but this research shows…it is particularly toxic to cancer patients.” https://www.macmillan.org.uk/aboutus/news/latest_news/lonelycancerpatientsthreetimesmorelikelytostrugglewithtreatment.aspx

Themes of loneliness often make their way into the writing shared by tcancer patients who attend my expressive writing workshops.  These are similar to those described by the National Cancer Institute:

  • Friends may have a hard time dealing with your diagnosis and not call or visit as they once did.
  • You feel sick post-treatments and aren’t able to participate in activities or social events as you once did.
  • It’s common to feel as if those around you—friends and loved ones—don’t understand what you are going through.
  • And even when treatment is over, you may suffer from loneliness, missing the support and understanding you received from your medical team and feeling vulnerable as your “safety net” of regular appointments is taken away from you.

Feelings of social inclusion and support, however, are an important factor in disease resistance.  Dr. Lisa Jaremka, a member of the Rice University research team, discussed the wealth of research showing that a sense of being cared for and loved is crucial to  well-being.  “The need to belong is a fundamental part of being human.  It’s like the air we breathe.  We need oxygen and we need healthy, thriving relationships equally as much.”

So what can you do to combat or overcome loneliness?  Although it’s a feeling we all may have at different points in our lives, it can be particularly prevalent during during cancer treatment and recovery, but let’s face it, it’s also unique to each person, and one works to alleviate loneliness in one person may be ineffective with another.  Overcoming loneliness requires many different approaches to discovering the emotional support we need to help contend with loneliness and its negative health effects.  When you’re feeling lonely, it can sometimes seem as if it’s just too much effort to reach out to others, so what are your options?

Thanks to The Globe & Mail article, I learned about Marissa Korda’s unique online community, “The Loneliness Project,”  initiated in the fall of 2017.  Korda, a Toronto graphic designer, invited people to share their stories and experiences of loneliness on her site.  It has inspired more than a few stories and grown into something much larger than she originally anticipated.  You can read more about Korda’s site and her inspiration for it here.  Writing, together with sharing their stories with one another, as participants in my writing groups will attest, is one antidote for loneliness.  An online community like Korda’s may be one way to to share your experience while sticking your toe in the water of reaching out and finding those important social connections that help you combat loneliness.

City of Hope, a leading research and treatment center for cancer, diabetes and other life-threatening diseases in Southern California, offers seven practical suggestions for helping to overcome the loneliness of cancer:

  • Ask for practical help, such as transportation, financial support or child care by telling your doctor, nurse or other support staff
  • Reach out to your loved ones and friends. Be honest about your feelings but be understanding of their schedules and limitations.
  • Find a support group. Whether a therapeutic support group or an expressive writing group, online or in person, it is an opportunity to share your experiences, hear those of other cancer patients, and learn from them too.
  • Talk to a therapist or your pastor or rabbi. Open up about your feelings in a safe and confidential place with a trained professional.
  • Join a spiritual or religious group to help relieve the loneliness of your cancer journey.
  • Find activities you can enjoy, staying busy as your energy and time allows. Whether a book club, yoga, meditation, expressive arts, taking an online class, or just having fun with a friend.

Remember, having social connections, particularly during the journey of cancer, is important to our health and well-being.  It’s important to have contact with friends, family and others to help diminish loneliness.   Start small:  even simple activities like taking a walk or sitting in the sunlight in a garden be a start to helping you combat loneliness.  Take it a step at a time, but gradually,  re-engage with the things and people that normally, help you feel better.  Reach out; reconnect with life and people.  It’s good for your health and a powerful way to overcome the debilitating effects of loneliness.  I remember how, during a very difficult period in my life, I turned to music, listening well into the late night after my daughters were in bed.  I had a favorite song and repeatedly listened to (and sang along with) Bette Midler’s “Friends” from her 1972 album, The Divine Miss M.:

...And I am all alone
There is no one here beside me
And my problems have all gone
There is no one to deride me

But you got to have friends
The feeling’s oh so strong
You got to have friends
To make that day last long…

I doubt Midler ever realized how much positive impact that one song had on my spirits–and my resolve to reach out to friends during a time I often felt like simply going to bed and covering my head with a pillow.  My friends helped me get through a tough time.  I’ve never forgotten how important to my healing they were.

Reach out; reconnect with life and people.  It’s good for your health and a powerful way to overcome the debilitating effects of loneliness.

Writing Suggestions:

  • What is your experience of loneliness? How did it feel?  What helped you overcome it?  What it was like to be lonely?  Write about it.
  • What images or metaphors best capture your experience or feelings of loneliness. Expand on them and create a poem.
  • Did you experience loneliness even after treatment had ended? Describe what it was like.
  • What has helped you diminish the feelings of loneliness during cancer or another serious illness?
  • How did friends and loved one help you combat loneliness?
  • What advice do you have for the newly diagnosed cancer patient or the cancer survivor completing treatment?

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i am running into a new year
and the old years blow back
like a wind
that i catch in my hair
like strong fingers like
all my old promises and
it will be hard to let go
of what i said to myself
about myself
when i was sixteen and
twenty-six and thirty-six

(From:  The Collected Poems of Lucille Clifton 1965-2010, Young & Miller, Eds., 2012)

“I am running into a new year,” the first line of a Lucille Clifton poem, came to mind early this morning as I greeted the first day of January, 2019–although “running” is not entirely accurate.  Rather, if I am honest about the vagaries of aging, I am sometimes limping into a new year, depending on the aches and pains of a knee now showing the effects of damage done in my more youthful, reckless years.  Nevertheless, I’m moving forward into a new year with every good intention to make it as happy and healthy as I possibly can.

This past year had, as I’ve written in earlier posts, more than a few health challenges, not just for me, but  my husband as well.  I live with heart failure, diagnosed in 2008, likely from damage to the heart muscle during radiation treatments I had nearly twenty years ago.  It is a condition that slowly, but steadily, tends to worsen.  I’m doing relatively well, thanks to medication and the care of an extraordinary cardiologist and her team, but frankly, sometimes that little shadow of fear awakens and trails after me late in the night.

My husband, who has been extraordinarily healthy throughout his life, was diagnosed, quite unexpectedly, with stage 3 kidney cancer in the fall and subsequently had the cancerous kidney removed.  Again, discussions of mortality, interspersed with disbelief, occupied our conversations and thoughts…”what if…?”  Happily, he’s recovered very well, and will, we hope, be granted several more years of healthy living.  Nonetheless, these are the events in our lives that can temporarily bring us to our knees, reminding us of life’s fragility and more, the awareness that we are both growing older, our bodies showing signs of age, and acknowledging we will not live forever.  It’s humbling, and yet, this is life, being human.  No one is immune to its ups and downs,  heartache, illnesses, losses and tragedies that sometimes bring us to our knees, and remind us of our mortality.

Now it is the first day of another year, and for the past few days, I have been writing about and exploring the intentions I have for myself during 2019–how I want to navigate this new year in word, deed and actions.  As I have done for the past many years, I choose a single word to frame my intentions for navigating another year, writing it out, framing it and placing it on my desk as a constant reminder of how I want to live, the actions I want to take.  With all that has happened in the past several months, health-related words have been top of mind.

I began the familiar process, brainstorming words for two or three days and narrowing the possibilities, settling on a shortened list of options.  I then consulted the internet for additional definitions and anything related to the exercise of choosing guiding words or intentions for one’s life.  That’s when I got derailed for a short time, discovering that my practice of choosing one word to frame each new year was now called the “guiding” or “one word movement.”  Huh?  I’ve been part of some movements in my lifetime, like civil rights, anti-war, or women’s rights.  But the act of finding a single word that captured my intentions for the coming year did not seem to be something I’d think of as a “movement.”  Not only that, but I found that there are workshops, coaching and commercial publications offered for this very act of finding one’s guiding word for a new year!  Ack!  I put my words lists aside for a day or two to try to regain a sense of the meaning this practice as for me.

Once I resumed my search and settled on a word which, when I told my husband what it was, he remarked, “that’s a good one.”  The word?  “Flourish.”

To flourish, according to the dictionary, is to thrive, achieve success and prosper.  It’s also associated with luxuriant growth or a sudden burst of activity.  One can trace its etymological roots to early Latin, “flor,” meaning to flower although the first known use of the word “flourish” in the English language didn’t appear until the 14th century.  Flourish, I decided, is an apt word in which to frame the intent for how I want to guide my life–and my health–in the coming year.

So I turned again to scouring the internet for uses of “flourish,” finding a recent definition from popular psychology that seemed consistent with the intentions underlying my choice of it as a guiding word for 2019:

To flourish is to find fulfillment in our lives, accomplishing meaningful and worthwhile tasks, and connecting with others at a deeper level—in essence, living the “good life” (Martin Seligman,PhD, 2011).

Seligman’s definition led me to the site, sub-titled “Your one stop positive psychology resource! ”  I remembered my husband had taken a course of Dr. Seligman’s.  I kept reading, discovering that he is now referred to as “the founding father  of flourishing,” due to his development of the Positive Psychology model and what flourishing includes, i.e.,  “positive emotions, engagement, relationships, meaning and accomplishments.”

But Seligman’s definitions aside,  I had another brief “WHAT?” moment and complained to my husband that not only had “flourish” been around for several centuries, but in this era of instant communication and social media, everything, even vocabulary definitions seemed to be reduced to fads, commercialism, and pop culture.  My husband, also a psychologist, countered my objections, told me again how inspired he’d been with Seligman’s course, positive psychology and more, that Seligman was a great teacher.

“I know, I know,” I sighed.  But Seligman’s definitions of flourishing was clouding my sense of meaning.  I stopped and put my word choice and musings on it aside for another day so that I could articulate and reclaim the meaning “flourish” signified for my life.   I found a favorite poem, a reminder, from William Stafford that helped:

There’s a thread you follow. It goes among
things that change. But it doesn’t change.
People wonder about what you are pursuing.
You have to explain about the thread.
But it is hard for others to see.
While you hold it you can’t get lost.
Tragedies happen; people get hurt
or die; and you suffer and get old.
Nothing you do can stop time’s unfolding.
You don’t ever let go of the thread.

(“The Way It Is,” By William Stafford, From: The Way It Is, 1998)

I returned to my contemplation, knowing I had to follow the thread of what I was exploring when I chose “flourish” as my guiding word for this year.  It is sometimes difficult to silence the voices of others, but it’s important to  struggle with and clarify what any word or set of definitions means in a way that honors our experience.  I spent yesterday writing about the meaning of “flourish” once again.

Flourishing, for me, is about living fully, not being weighed down emotionally and, to the extent I am actually able, physically.  It’s about being present to each day, the moments of simple beauty, kindness, and good in others.  It signifies finding new things to try or discover, time for play and fun with my grandchildren or my husband.  It is about staying active, whether I feel lead- footed in my dance class or not, whether I walk less briskly than I once did or not, or whether I wake up with stiff joints in the morning.  Flourishing is about renewed spirit, living with gratitude, and yes, a positive outlook.   To flourish means, for me, to be alive, truly alive, and participate in living to the fullest extent I can for as long as I can.

Today I’ll look for an image that is a metaphor for flourishing, print it out and place it with the word, “flourish,” written beneath it in the little frame reserved for my annual guiding words.  A constant reminder, this single word, which I claim as my guiding word, the one that will help to keep me on track with my intentions for living in 2019.

Perhaps you also have a guiding word or a list of intentions you wish to live this new year by.  Whatever you wish and intend for yourself and your life, I wish you a new year filled with new possibilities, discoveries, healing and hope.

Happy New Year.

Writing Suggestions:

Where can you find your inspiration for the coming year?

  • Start anywhere, with a single word, an image, a line from a favorite poem.
  • Try making a mind map, a brainstorming list, letting each word or association take you into new territory.
  • Alternatively, simply set the timer for five minutes; open your notebook and exploring all you want this New Year to be about.  You can even begin with “I don’t know where to begin, but…” and keep going, wherever those first words lead you.

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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.

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“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.

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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.

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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

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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?

 

 

 

 

 

 

 

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