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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?

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The art of reading is in great part that of acquiring a better understanding of life from one’s encounter with it in a book. — André Maurois

It’s taken me the better part of three days to organize my books into some kind of order on my bookshelves.  In part, I have a lot of books, although far fewer than I used to when our move back to Toronto dictated some serious downsizing of our belongings.  Despite my reluctance to let many of them go, a feeling much like saying good-bye to old friends, I did, inviting writing group members to choose from the books tagged for donation, giving a few favorites to friends, and donating several boxes to the local library.  Yet I kept favorites, volumes of poetry, selected works of fiction, books on art and writing, and to my shock, I still had enough to fill three large bookcases.

The process of organizing was a slow one, alphabetizing poetry books, grouping fiction favorites and then nonfiction before several volumes on writing and poetry craft, even several favorite children’s books I have yet to let go of.  But as time-consuming as the basic task was,  I was further slowed in my progress by the constant desire to open a book to a dog-eared page, re-read the underlined passages, someone’s inscription on the title page, or if poetry, more than one of a poet’s collection.  I was often lost in remembering:  where I was, what was going on in my life, why I loved a book or a poem as much as I did.  My books, it turns out, have been as much a source of healing and happiness as they were about learning and growth.

“And death shall have no dominion,” Dylan Thomas wrote in his poem by the same name, his words offering me some measure of solace in the wake of my first husband’s drowning:

And death shall have no dominion.

They shall have stars at elbow and foot…

Though they sink through the sea they shall rise again;

Those lovers be lost love shall not;

And death shall have no dominion…  

My volume of e.e. cummings Complete Poems 1904-1962 was filled with marked up passages, asterisks, and dog-eared pages, among them one that during my recovery from grief and loss offered me hope and a new way of living:

may my heart always be open to little
birds who are the secrets of living
whatever they sing is better than to know
and if men should not hear them men are old

may my mind stroll about hungry
and fearless and thirsty and supple
and even if it’s sunday may i be wrong
for whenever men are right they are not young…

I pulled Wallace Stegner’s Pulitzer Prize winning novel, The Angle of Repose (1971), sitting down to re-read several pages.  I remembered reading the novel shortly after I  moved my children and myself from Halifax to Toronto two years after my husband’s death to begin my doctoral studies.  I was aching from loss and longing for what I still called “home,” the small Northern Californian town where my father’s family had homesteaded, settled and where, each day of my childhood, I gazed at the beauty of Mt. Shasta, one of the volcanic peaks in the Cascade Range.

Stegner’s book was a powerful read for me, and he became one of my favorite writers.  In Angle of Repose,  the protagonist, Lyman, a writer confined to a wheelchair, had been recently been abandoned by his wife.  He was filled with bitterness and a sense of defeat.  After moving into his grandparents’ house, he decided to chronicle his grandparents’  early days in the western frontier.  As he read through his grandmother’s letters, he discovered much more about their marriage, struggles and difficulties than he anticipated. Through their story, he learned not only of their lives, but his own.

I sampled passages from several of the pages, in awe of Stegner’s command of language, his deep understanding of the challenges of early life in the  West, and the way in which he artfully moved from the struggles of the grandparents to his protagonist’s.  There were lessons in the book had real impact for me at the time,  and I had underlined passage after passage.

  • Home is a notion that only nations of the homeless fully appreciate and only the uprooted comprehend…” 
  • Hope was always out ahead of fact, possibility obscured the outlines of reality…” 
  • We must be reconciled, for what we left behind us can never be ours again…”
  • She saw in his face he had contracted the incurable Western disease. He set his crosshairs on the snowpeaks of a vision.

It’s no surprise, perhaps, but as my shelving slowed and I paused to page through one book after another of the books I’d loved, I was reminded that reading, perhaps as much as writing, was not only an important part of my daily life, but of healing and happiness.

“Medicines and surgery may cure, but only reading and writing poetry can heal.”                    J. Arroyo, author

It’s not a novel concept (no pun intended).  The notion that books can make us emotionally, psychologically and even physically better goes back to the ancient world.  “The Reading Cure,” published in a 2008 issue of The Guardian reminds us that Apollo was not only the Greek god of poetry, but also of healing.  Aristotle believed literature had healing benefits and could be used to treat illness.  Hospitals or health sanctuaries in ancient Greece were typically situated next to theatres, most famously at Epidaurus, where dramatic performances were considered part of the cure.

One sheds one’s sicknesses in books– D. H. Lawrence

A few months ago, a friend sent me a link to a 2015 New Yorker Magazine article “Can Reading Make You Happier?” by Ceridwen Dovey.  Dovey explores the origins of Bibliotherapy, which is defined in the Oxford English Dictionary as “an interaction between the reader and certain literature which is useful in aiding personal adjustment.”  Bibliotherapy is a therapeutic practice, widely used in the U.K., that uses words to soothe the emotions and alter thoughts and to help people deal with psychological, social and emotional problems.   Covey notes that the Ancient Greeks inscribed a library entrance  in Thebes as a “healing place for the soul, noting that Shakespeare, in the play “Titus Andronicus,” encourages the audience to  “Come, and take choice of all my library, And so beguile thy sorrow …”

Bibliotherapy came into its own at the end of the nineteenth century. Sigmund Freud began using literature during psychoanalysis sessions, famously remarking, “Whenever I get somewhere, a poet has been there first.”   Following World War I, as traumatized soldiers returned home from the front, they were often prescribed a course of reading. Later in the century, bibliotherapy was also used in hospitals and libraries, and since, the practice has been utilized by psychologists, social and aged-care workers, and doctors as a viable mode of adjunct therapy.

You may be interested to know that there is scientific research that supports health benefits of reading, for example, Covey cites a 2011 study published in the Annual Review of Psychology that showed when we read about an experience in a novel, we draw on the same brain networks when we’re reading stories and when we’re trying to guess at another person’s feelings.  And other studies suggest that people who read a lot of fiction tend to be better at empathizing with others.  At the very least, reading does boost your brain power, like a good jog exercises your cardiovascular system, and it can help you relate to others feelings, particularly if you read literary fiction.  Reading helps us relax, and reading before bed even helps us sleep.

But perhaps the most important thing reading does for us is in its capacity to open our eyes, minds and hearts to the larger world, to immerse ourselves a world beyond our everyday lives, and to find ourselves among the words another has written on a page–words that speak to what we are experiencing, that remind us of hope and healing.  What good literature can do and does do best, for so many of us, is touch our souls.

From Great Expectations I learned the power the stories we tell ourselves have to do either harm and good, to ourselves and to others; from Death of a Salesman I learned the dangers of a corrupt version of the American Dream; from Madame Bovary, I learned to embrace the real world rather than escaping into flights of fancy; from Gulliver’s Travels I learned the profound limitations of my own finite perspective; and from Jane Eyre I learned how to be myself. These weren’t mere intellectual or moral lessons, although they certainly may have begun as such. Rather, the stories from these books and so many others became part of my life story and then, gradually, part of my very soul. –Karen Swallow Prior, The Atlantic, 2013. 

Writing Suggestions:

  • Consider how reading has played a role in your life.
  • What role does reading play in your life?
  • What kind of books or literature do you most prefer? Why?
  • Has reading helped you during difficult periods in your life? How?
  • What are some of your most memorable or enduring books or poetry you’ve experienced? Why?
  • Describe a difficult time in your life and a book or poem which offered you some solace and insight.

 

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This morning, I opened my notebook for the first time in more than two weeks, a lapse created by the intensity of preparing for a move to a new apartment, then living among the boxes as we tried to make sense of fitting ourselves and our lives into a smaller space once again.  My pen felt awkward in my hand, and for a few minutes, I wrote aimlessly, without, it seemed, direction or meaningful content, before I paused, the wrote, I have missed my routine of writing–the space and quiet of solitude, hearing myself think, sorting out what I feel and stumbling in to a new insight or discovery.

When our lives are in upheaval, no matter the precipitating event, it’s not uncommon that the routines or daily rituals that we find calming and that help keep us centered, fall by the wayside.  Whether cancer or other serious health issues, job loss, aging and retirement or, as we have done in the past week, changing residences, we’re thrown off-balance, into a maelstrom of confusion, stunned, ill-prepared and questioning ourselves and our lives.  As one poet put it, it’s a bit like living atop a fault line…

passing underneath your living room:
A place in which your life is lived in meeting
and in separating, wondering
and telling, unaware that just beneath
you is the unseen seam of great plates
that strain through time? And that your life,
already spilling over the brim, could be invaded,
sent off in a new direction, turned
aside by forces you were warned about
but not prepared for?

(From:  “Fault Line” by Robert Walsh, In:  Noisy Stones:  A Meditation Manual, 1992)

Our moves, first from California back to Canada just one year ago, and now to a more convenient but somewhat smaller apartment in Toronto, have been welcomed, yet more challenging than either my husband or I anticipated.   It’s been much more than simply changing domiciles.  It’s the realization, coupled with the necessary downsizing, letting go of old mementos and boxes of belongings that tell the stories of our younger and different lives, that we are growing older, just as our parents did before us.

Like it or not, life for all of us keeps changing, and many times the changes are ones we don’t expect or underestimate the impact they have on us.  I ended my morning write, briefly describing what turned into an ordeal of moving, even though it was only nine minutes from our old apartment, writing Life continues to change and requires that we, too, adapt.  Change is the human experience.”  It’s true for all of us.  We think we’ve “arrived,” settled into a place, a career, and then something unexpected happens.  I recall Joan Didion’s first words her memoir of loss and life change,  “Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends. ― In:  The Year of Magical Thinking, 2007

Life, whether we like it or not, hands us events we have little or no control over: life-threatening illness, significant loss, tragedy, suffering, aging.   As sociologist  and cancer survivor Arthur Frank stated, “…by the time we have lived through it, we are living differently” (from:  At the Will of the Body, 1991).  Who we are, truly, may become more apparent how we choose to deal with our illness or loss.  This is what makes us uniquely human–our spirit, determination, resilience—and they are never more apparent than when we are faced with the unexpected, even the inevitability of our lives changing.

Any life threatening illness, significant loss or tragedy changes us.  As Professor Emeritus of Sociology (U. of Calgary) and cancer survivor Arthur Frank stated, “…by the time we have lived through it, we are living differently” (in At the Will of the Body, 1991). Who we are, truly, may become more apparent in how we choose to deal with the unexpected and inevitable changes we experience. This is what makes us uniquely human–our spirit, determination, resilience—and they are never more apparent than when illness or loss strips all pretenses away.

Life will sometimes wallop us, brings us to our knees, to tears, and yet it is our greatest teacher too.  It says, “Listen up,” and teaches us something about ourselves.  All we know for certain is that life will change again–and again.  We will be affected, perhaps multiple times, by a triggering event, whether tragedy, illness, empty nests, unimaginable loss or awakening to the reality that we are moving toward the winter of our lives.  It is the realization Linda Pastan describes in her poem, “Elegy:”

Our final dogwood leans
over the forest floor…

It’s a relic
of the days when dogwoods

flourished…

When I took for granted
that the world would remain

as it was, and I
would remain with it.

(In: Insomnia, 2015)

We all can be lulled into taking life for grantedthat the world would remain/as it was, and I/would remain with it.  No matter what the actual event may be that brings us to our knees, we are forced to acknowledge and accept that our lives will change, not once, but many times.

How can you navigate life’s changes more successfully?  Transition has been written extensively about, and there are things you can do to lessen the upheaval and stress that comes with it.  Carol Berman, MD, writing in The Huffington Post, offers a few common sense suggestions for navigating through life transition and change:

  • Instead of being passive, try being active, anticipating outcomes, strategies you can employ to make the process of change better.
  • Take the time to acknowledge the past, the present, and what you believe is the future. 
  • If you experience strong emotions, such as anger or sadness, acknowledge them.Don’t stuff them down deep inside. Our emotions are pathways to a deeper and intuitive part of ourselves.
  • Breaking your transition into smaller steps can help you deal better with them.  When a major change is broken down in this way, it is not so overwhelming.
  • Reinforce and celebrate the positive steps you take towards navigating your transition.Give yourself a pat on the back!
  • Learn what a particular change or transition may mean for you.There are many resources on the major life events that affect our lives, whether cancer, parenting, retirement, job loss or many others. Read, talk to others who’ve experienced what you are going through.  It can help.
  • Reframe what change is to you. Change your perspective.  Life happens, and it changes constantly. If you don’t like what’s happening to you now or even if you do, the one certainty we all have is that it will change.

It’s taken me much longer to write a post this morning after a two week hiatus, and it was (I’ll admit) difficult for my perfectionist self to refer you, my readers, to the archived and previously published posts while my husband and I were consumed by our  moving process the second year in a row.  The good news is that the entire experience forced me to be a little more self-forgiving, to slow down and deal with the mountain of details and boxes that cluttered up my life for the past many days.  Change may be unsettling, but it is, after all, a great teacher if we let ourselves learn from it.  In the end, we discover that the resources for navigating through the ups and downs of life reside in us– not always easy, but necessary.  I turn to a favorite passage from the poet Wendell Berry as a reminder:

…And we pray, not
for new earth or heaven, but to be
quiet in heart, and in eye
clear.  What we need is here.

(From: “The Wild Geese,” In: Selected Poems of Wendell Berry, 1998)

Writing Suggestion:

  • Before you write a longer piece, brainstorm: List the different/most memorable events that triggered significant life change for you, e.g., breast cancer, father’s death, loss of a dear friend, losing house to fire (earthquake, flooding, etc.)… Then, without spending too much time on each, start a another list, only this time, for each event, complete two sentences: “Before _____________, I was____________.  After _______________ I was _____________.
  • From your list, choose the change/event that was most difficult for you to experience. Tell its story.  What was the triggering event?  How did you react?  What were the emotions you experienced?  How did you navigate through the change?  What or who helped?  What hindered? What did you learn?

 

 

 

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Last week, the spring series of the “Writing Through Cancer” expressive writing program at Gilda’s Club here in Toronto ended after eight weeks of writing together and sharing the stories of cancer and of life.  Despite nearly twenty years of leading these workshops, I always become a little choked up as we close each workshop series. I have never ceased to be humbled and inspired by the men and women who write with me each year–and I return home full of gratitude after every session for each person who has written so courageously and honestly.

As the group began to disband, holding the small collection of writing we print at the end of each series, they were already discussing how they remain in touch with one another and, perhaps, write together in the summer months.  One of the most healing aspects of writing together from the cancer experience is the sense of community that emerges from the workshops.  People discover that there is no need to explain what one feels or judgment of their writing, only the safety and support to write deeply, honestly, and to feel truly listened to and understood.

In the writing groups, we are all honoring the storytellers that we, as human beings, have always been.  No longer silenced by cancer, in the act of telling and sharing our stories, we begin to rediscover ourselves, who we were before cancer and who we are becoming. Our stories do much more than describe our experiences—they help to alleviate loneliness.  Stories are the language of community, and as we write together and share our stories of the cancer experience, we discover we are not alone.

“A patient is, at first, simply a storyteller,” Siddhartha Mukherjee wrote in The Emperor of Maladies:  A Biography of Cancer (2010), “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” (p.46).

… one must begin, then, by unburdening its story. Writing and sharing your stories of cancer helps to repair the damage done to your lives, the sense of who you are, the disrupted futures you face.  “Decay is the beginning of all birth,” Kat Duff wrote in The Alchemy of Illness (2000).  We are our stories, and in the act of sharing them, we affirm our uniqueness and discover 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.”   While cancer–or any other serious illness–changes us, perhaps it has the capacity to “remodel us,” as poet Jane Hirshfield said, “for some new fate.”

“Recovery is only worth as much as what you learn about the life you’re regaining,” Frank said.   And it’s not just cancer that teaches us—any momentous, challenging chapter of our lives has the potential for significant learning.  Yet to learn from our experiences requires something of us:  courage.  As Maxine Hong Kingston tells war veterans who write with her, it requires that you “tell the truth.”  It’s difficult to do sometimes, because we have to be willing to dive deep beneath the surface of the events and do some hard soul searching.  Yet it is exactly that courage to go deep and tell our truth that, “in the exchange of stories, we help heal each other’s spirits,” Patrice Vecchione said in Writing and the Spiritual Life (2001).

Writing together with others who have experienced events and illnesses is beneficial, yes, but it is so much more.  As I witnessed again these past eight weeks with the group at Gilda’s Club, as you begin to write and share your experience, you  move beyond the shock, the fear, anger and sorrow, and gradually, your whole life makes its way into what is written, not only the cancer chapter.  The real treasure lies in the truth you discover, and in unearthing that truth, the potential for true healing begins.  Suffering, we remember, is part of the universal human condition, told and retold in literature, history and memoir.  The act of sharing your stories with one another is not only about telling your story, but about telling the human story—the one that has been told and retold throughout our existence.  It’s how you discover new insights and meaning from your experiences.

Because you are reading these blog posts, you probably like to write or at least, would like to do so. If you do not belong or are not near an organized writing program for cancer or other serious/debilitating life events, you can certainly write alone–each blog posted on this site  has writing suggestions to help you get started (and always a year of archived posts).  Of course, the shared motivation that inspires you to write is a benefit of writing with others.  The more difficult part is to keep it going, to not try to do too much too soon with your writing, and to continue the group commitment–but it’s worth a try!  One of my former writing groups still meets monthly as we did when I lived in San Diego, rotating the group leadership and continuing to write and share their words with one another–and the sense of a bonded writing community has grown and flourished. Alone or with others, you have everything you need to write.

…And we pray, not
for new earth or heaven, but to be
quiet in heart, and in eye
clear.  What we need is here.

(From: “The Wild Geese,” In: Selected Poems of Wendell Berry, 1998)

Writing Together or Alone:  Some Suggestions

  • Where do you begin?   Don’t try to force a poem or a narrative into being, to make it “interesting” or “descriptive.”  Start with what you know.  Something as simple as your name and how you got it or what it means to you, or use a family photograph, one of your father or mother or your younger self.  Write about the moment you first heard the word, “cancer,” or simply make a list of “before cancer, I was…” and “after cancer, I am…” before choosing one and writing for a longer period.
  • Try writing for just 5 or 10 minutes a day. Set the timer and begin with anything, a word, a phrase, something you see. Write without stopping; go wherever it goes.  Now read it over.  Underline any phrase that stands out for whatever reason.  Use that phrase as your beginning and then write again as before, letting your words go where they may.  See what changes.
  • Write with a buddy or a small group. Some of my earlier writing groups have tried writing together after the program ends.  Many have been successful, but it takes commitment.
  • If you’ve formed a small writing group, pass the “facilitator” baton to one another for each meeting. For example, someone is responsible for bringing and introducing two writing prompts for the group to use as well as managing the time.  Keep the writing time short (10 – 20 minutes).  A reminder:  When you write together, don’t try to critique and judge.  The process is straightforward. You have come together to write, share your writing, and hear what in your work touches or engages others.  Offering critique is a very different group writing experience and comes much later.  Incorporated too soon, it can shut people down.
  • If you’re writing alone, that’s fine too, but without the motivation we sometimes get from writing together with others, it requires a bit more discipline. And you must try to keep your internal critic at bay!  The process is the same.  Start small.  Five to 10 minutes several times a week, preferably at a time you can “guarantee” a little space and quiet for yourself.  (In her early days of motherhood, Pulitzer Prize winner Carol Shields wrote while her children napped.)  Re-read what you’ve written.  Underline the words or phrases that seem to stand out.  Use one or more of those to write again for a short time, going deeper.

Stuck?  Drop me at email or post a comment on the blog site, and I’ll do my best to offer some suggestions.  It matters less what you write and as the members of my groups discover, that you write.  Your mind, in partnership with your pen, will take you where you “need” to go.

 

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I’m gonna’ sit right down and write myself a letter

And make believe it came from you…

(song by Fred E. Ahlert & Joe Young, 1935)

You know the kind, a letter in which you pour out your heart, one where you tell the potential recipient what you feel, honestly and openly?  Many of us have, and it’s probably one of the reasons the song, “I’m Gonna’ Sit Right Down & Write Myself a Letter,” first recorded by Fats Waller in 1935  became a standard of the Great American Songbook .  The song has been recorded by more than a few vocalists over the years, including Billy Williams, Frank Sinatra, Nat King Cole, Paul McCartney and Madeline Peyroux.

There’s truth in those lyrics.  A letter written to yourself or one you write to another person but never intend to send can make you feel better.  Why?  Not only does it give you the freedom to express strong or difficult emotions, simply doing so helps to relieve stress,  often a culprit in illness and health problems.

Writing, we know, has many health benefits, but the most healing kind of writing is honest, writing that acknowledges your emotions openly.  In fact, the ability to feel and name both positive and negative emotions is critical to healing.  Sometimes, however, you may be reluctant to write honestly, worried that you’ll feel worse or guilty, especially when what we want really want to say involves admitting feelings about things or others that you’ve never fully expressed.

Psychologist James Pennebaker explained it this way:  writing honestly and openly about how you feel can be a bit like the experience of seeing a sad movie.  You come out of the theatre feeling bad; maybe you even cried during the film.  But you’re wiser.  You understand the character’s issues and struggles in a way, perhaps that you didn’t when the movie began.  It is in the expression of those feelings of sorrow or anger that you can begin to stand back, re-read and examine what you’ve written.  You have a chance to reflect on it and in doing so, understand yourself and the sources of your pain better than you did before.  There is relief in that realization–and there is the possibility for insight.

In “Letter, Much Too Late,” Wallace Stegner, Pulitzer Prize winning author, addressed his dead mother.  Stegner felt very close to his mother, who always tried to protect him from the cruelty of his father, even though she was rendered helpless in the face of her husband’s abusive personality.  While he was a graduate student, his mother died from breast cancer.  He nursed her in her final days and sat at her side as she took her last breath. “Letter, Much Too Late” was written fifty-five years after her death.   In it, he remembers her, asks for forgiveness and remembers her as a mother with enduring love for her son.  He wrote:

 “In the more than fifty years I have been writing books and stories, I have tried several times to do you justice, and have never been satisfied with what I did. . . .I am afraid I let your selfish and violent husband, my father, steal the scene from you and push you into the background in the novels as he did in life. Somehow I should have been able to say how strong and resilient you were, what a patient and abiding and bonding force, the softness that proved in the long run stronger than what it seemed to yield to.” (In:  Where the Bluebird Sings to the Lemonade Springs, by Wallace Stegner,1992)

Writing, as Stegner’s letter illustrates,  offers the opportunity to “think to” another, whether it is yourself, your body, or someone with whom you have unresolved issues.  Imagining another and addressing your writing to that person encourages you to write naturally.  Even if you never show it or send it to anyone, writing to that imagined other has the effect of making your words more powerfully felt. It gives you the freedom to  say what you really want to say.   You can even “talk back,” writing to another, your illness or yourself.  One of the exercises I’ve used in my writing groups is to invite the members to address their letters to their cancers or their bodies.  “What,” I ask, “do you want to say to yourself?  Your cancer?  Your body?”  Here are two responses from former group members:

Cancer:  You entered my life without my permission. You tried to turn my body against me, leaving pain and uncertainty in your wake…Because of you I wondered if I would see my children grow up… You made me feel like less of a woman…You took my hair and scarred my body. You made me cringe at my own reflection in the mirror. Others see a warrior. I see someone wounded – broken by the battle…(2013 “Writing Through Cancer” workshop participant)

Cancer, you’re a wuss:  Do you know who you’re messing with? Do you know what I did to the last disease that dared enter this body? I don’t think you get it, how wrong you were to choose me of all people. I want to let you know that you may have gotten past my defenses, snuck in through the back door but I have my eye on you now and you aren’t going to get away with anything else…You won’t find me cowering in a corner, sniveling in fear and weighed down with depression…Bring it on, cancer. You won’t win this one. (J., 2014 workshop participant)

 Unsent letters are a great way of being able to say what we really want to say.  Whether during cancer or at other times in our lives, we all have the need to release the unspoken, to cleanse or reach out to another, whether living or dead, person or thing.  An unsent letter can be a tool to help express difficult or complicated feelings that might otherwise not be expressed.

Although I have incorporated the “unsent letter” as a prompt several times in my cancer writing workshops over the years, one participant’s experience with the exercise stands out.  She had, the day before our group met, received news her cancer had metastasized and that she had, at best, only a few months left to live.   G. used our unsent letter exercise to write to her doctor, who had cared for her throughout thirteen-year cancer journey.  After writing, she shared her letter aloud with the group.  It was strong and beautifully written, and expressed her feelings clearly.  She revealed how hurt she’d felt when her doctor didn’t establish eye contact with her as he conveyed her recent test results.  After she’d read, she remarked that she felt better, saying, “It’s helped just to write down what I feel, even if I’m not going to send it to him.”  Unlike most times I’ve offered the exercise, however, G. took the letter one step further

The following meeting, G. told the group she decided  to read her “unsent” letter aloud to her doctor at her follow-up appointment.  She described how visibly moved he became, and how he confessed he had struggled to tell her the news at her previous appointment, not trusting himself to keep his composure as he did conveyed the results.   He apologized to G. and thanked her for having the courage to share her letter with him.  We were humbled by G.’s courage in sharing her letter with her doctor, but it was an important moment between doctor and patient.

Of course, in this high tech, instant communication world of email, Facebook and Twitter, the “safety net” that writing an unsent letter offers is all but irrelevant.  Consider recent jabs, name calling, and racial comments and repercussions that result after an angry or shocking tweet going viral.  Even among many leaders, the unsent letter has been judiciously used to cool the anger experienced in the many retorts from critics or opponents.    According to journalist Maria Konnikova, in her article, “The Lost Art of the Unsent Angry Letter,”

Whenever Abraham Lincoln felt the urge to tell someone off, he would compose what he called a “hot letter.” He’d pile all of his anger into a note, “put it aside until his emotions cooled down,” Doris Kearns Goodwin once explained on NPR, “and then write: ‘Never sent. Never signed.’ ” Which meant that Gen. George G. Meade, for one, would never hear from his commander in chief that Lincoln blamed him for letting Robert E. Lee escape after Gettysburg.

Lincoln was hardly unique. Among public figures who need to think twice about their choice of words, the unsent angry letter has a venerable tradition. Its purpose is twofold. It serves as a type of emotional catharsis, a way to let it all out without the repercussions of true engagement. And it acts as a strategic catharsis, an exercise in saying what you really think, which Mark Twain (himself a notable non-sender of correspondence) believed provided “unallowable frankness & freedom.”

The beauty of writing an unsent letter is that it allows us to express difficult emotions on paper, safely, and get them out of our minds and bodies.  It quiets us, cools us down, and gives us a chance to reflect from what we’ve so furiously written in the wake of strong emotions. In re-reading, we learn from what we’ve written—new insights, greater clarity or understanding, even, as G. was, be able to express ourselves to another with compassion for ourselves and the other person.

Writing Suggestions for This Week:

  • This week, try your own hand at writing an unsent letter.  You might write to a loved one, a physician, a higher power, your body or even, cancer.
  • Write with the assurance that you can say what is honestly in your heart and mind, that no one ever needs to see or hear what you have written.
  • What do you really want to say?

 

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Remember how far you’ve come, not just how far you have to go. You may not be where you want to be, but neither are you where you used to be. — Stuart Scott

Siri, that monotonous virtual voice of iPhone assistance, has proven unreliable.  Where I dreamed of asking for directions to my desired destination and then be guided by her unflappable female voice through the streets and freeways of my city, assured of making the correct exit and turns to arrive without getting lost, I have been offered, more times than not, directions to places not even in Toronto, like a city in Oklahoma or somewhere north of Algonquin Park.  Siri remains entirely unflappable but I, on the other hand, end up talking back like a crazy woman to that impersonal Siri voice as if there’s a real being, miniaturized of course, living in my iPhone.   I confess that I’ve uttered more than a few expletives in Siri’s direction.

How, I wonder, did I ever get from point A to point B in the years I was consulting with organizations scattered all over greater Toronto or the multitude of new technology firms in Silicon Valley?  I recall having street maps and written directions dictated over the telephone by clients.  I did just fine with those directions, writing them down before I got in the car, but  I was thrilled when Google first introduced online maps with turn-by-turn directions.  I made occasional wrong turns from time as the early maps were refined and corrected, but when I got lost, I’d simply stop and ask for help.  Once in a great while, I arrived late, but I always got to where I intended to go, all without any assistance from a GPS or Siri guiding me to my destination.

We’ve become seekers of directions on just about anything in life.  We live in a world that abounds with instructions, whether you’re seeking to find out how to cook a certain vegetable or fish, find directions to a place you haven’t been before, assemble furniture, fill out necessary forms and documents, or deal with health and emotional complaints.  Not only will you likely find dozens of sites and articles on any topic by perusing the web, but Amazon’s bookshelves contain titles for every aspect of life–and illness.  The preponderance of self-help books on the market represents an industry worth over $10 billion annually according to the article, “The Problem with the Self Help Industry,” appearing in a 2011 issue of The Huffington Post.  Whether you seek to initiate change or you’re forced to change your life due to unexpected illness, hardship or loss, there’s likely a book, podcast or DVD out there that guide you in a step-by-step explanation on how to do it.   Dr. Jim Taylor, author of the article states, “… Contrary to the assertions of just about every self-help book that has ever been written, change takes incredible commitment, time, energy and effort. Someone might be able to show you the way, but you have to make the journey yourself.”  Making the journey yourself, in many ways, also applies to the cancer journey.

Teva Harrison’s book, In-Between Days (Anasi, 2016), a graphic memoir about living with terminal cancer is worth a read for anyone living with–and learning to navigate through–cancer.  She writes, “When I was first diagnosed, I made all these frantic lifestyle changes, as if I could turn back time, undo my bad luck.  I think a lot of us do that…I was frantic, driven by panic…”   As her cancer has progressed, however, her treatment has also changed, and she has come to terms with her reality of living with advanced and terminal cancer, writing, “If we manage to stabilize it, it’s only stable for an indeterminate while…it’s only a matter of time before it finds a way around the barricades and begins to grow again…”  Harrison’s journey requires she adapt to and navigate her life through constant change, yet even in the face of a terminal and progressive illness,   she looks for ways to enjoy what she can. “I mean, the cancer is here, and I have a life to live.  And sometimes living well includes eating something made with sugar or having a glass of wine with dinner.  I’m not going to be hard on myself.  I’m going to enjoy every minute I can.”

Harrison describes the importance of friends, family members, and medical professionals and specialists who continue to help her with the reality of her illness, complexities of treatment, support and care.  But the changes in her life from “before” cancer  to “after” cancer are those she has learned to come to terms with in her own way.

There are also sometimes costs to our post-cancer lives:  bodily after-effects of treatment or surgeries that may last for years or force us to come to terms with a permanently altered body.   According to the Cancer Council of Australia, “Studies on people who have survived cancer are limited compared with studies about preventing cancer… research does suggest that a healthy lifestyle can stop or slow the development of many cancers… It also shows that some people who have had cancer may be at an increased risk of other health problems, such as heart disease, lung problems or diabetes.”

I considered myself lucky when I was diagnosed and treated for a very early stage of breast cancer eighteen years ago.  I followed the doctors’ treatment plan to the letter: two lumpectomies, tamoxifen, and seven weeks of daily radiation to my left breast.  Much later, I learned there were unexpected costs not fully understood nor anticipated at the time.  Although the changes are not visible,  I live with a body permanently altered by cancer and serious illness,

Eight years after my treatment, I collapsed on the pavement while walking my dog and was diagnosed with heart failure.  My doctors have told me it’s highly likely the radiation I’d had following my lumpectomies may have damaged my heart muscle.  After the diagnosis, I was in a state of shock for weeks.  Heart failure is a condition that does not improve, although medication, diet and exercise can help to slow the inevitable decline in heart functioning.  My treatment plan is routinely reviewed, and it changes from time to time as my condition requires.  My intent is to live as long as possible despite this condition, but initially my diagnosis challenged my self-perception  and expectations for a “normal” life.  Thankfully, I have an extraordinary cardiologist and with continued research and treatment innovation, there may be more hope for heart failure patients.  In Canada, heart disease is the number one cause of death for women over 55.

Yet despite excellent treatment, the increased knowledge and information available, I have moments when my worry and fears surface.  At those times, I stop searching for new research studies and avoid the invitations to online support groups so that I do not  weigh my days down preoccupied by worry or fear.  I focus, instead, on the work and activities I love–besides, as Gilda Radner, former SNL member who died of metastatic cancer, famously said, “It’s always something.” And so it is for all of us, and when we’re challenged by cancer, heart disease or any serious illness, we have to find the best ways for ourselves to navigate the reality of living with a body altered by illness.

In the poem, “There’s Not a Book On How To Do This,” cancer survivor Sharon Doyle reminds us of the challenge of discovering our own way through cancer and other serious illness as she sketches the composition of her fall garden after her cancer treatment has ended.

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

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

don’t have cancer anymore…

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

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

There’s not a book on how to do this…” Think about it.  Whether cancer, heart disease, divorce, the loss of a loved one, job loss—any major life challenge—we don’t have the luxury of a GPS or even an instruction booklet to help us navigate through our life’s upheavals, fears, or grief.  Yes, we have others’ advice.  We have the comfort of friends and family, of physicians and helping professionals, but ultimately, the journey is ours to navigate, the road full of unexpected twists and turns, conundrums and set-backs.  We begin composing a new life with each step we take—one that honors where we’ve been but also embraces what we have discovered about ourselves and our lives in our journey.

Doyle’s loving gifts from her family, the birdsong and flowers, are symbolic of the support that gave her courage and hope as she made her way back to health.  In the final stanza, though, the reader may smile as she describes her unique way to celebrate her recovery and her life after cancer:

I left vacant fourteen
trellis lightscapes for
balloons.

 

Writing Suggestions:

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

  • What helped you navigate the rough waters of such profound and unexpected change?
  • What internal compass—your beliefs, aspirations, or faith—played a part in helping you rediscover hope and embrace a new life?
  • Based on your experience, what advice or suggestions might you offer someone just beginning the journey through cancer?

(Previously published in the May 2018 issue of Cancer Knowledge Network , “Writing for Wellness,” a bi-monthly column by Sharon Bray, EdD)

 

 

 

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Now that spring has finally arrived, I’ve noticed a shift in my writing, one no doubt inspired by budding trees, flowers and sunshine.  It’s a sharp contrast to the writing I did during the winter, my mood dampened by grey days, cold and snow.  Life was too often defined by an aching knee, repeat doctor’s visits and antibiotics to treat a bad case of bronchitis.  My writing mirrored my mood, as grey as the days themselves, filled with repetitive themes and forced prose.  I wondered if I had become dependent on some new crisis to re-ignite my muse.  After several months of transition, change, and new medical challenges, I did not relish the idea of any kind of crisis, guilty of lackluster writing or not.

That’s the way writing often starts, a disaster or a catastrophe…by writing I rescue myself under all sorts of conditions…it relieves the feeling of distress.  –William Carlos Williams, physician & poet

But the thing is this: many great writers confirm that a crisis is often what triggers the initial desire to write.  Writing out of pain and suffering has provided inspiration for many of our works of great literature.  Novelists and poets have described their writing as a form of therapy, helping them heal from life’s traumatic events.  As Louise DeSalvo states in her book, Writing as a Way of Healing, those life crises have inspired many of our greatest cultural creations.  Author Paul Theroux once described writing like digging a deep hole and not knowing what you will find.  He admitted to feeling a sense of initial shock when he read authors like F. Scott Fitzgerald, Graham Greene or William Styron, discovering powerful—and personal—themes of alienation or suffering in their work.  Fitzgerald memorably described his battle with alcohol in The Crack-Up; Greene wrote of his manic-depression in A Sort of Life, and Styron examined his suicidal depression in Darkness Visible.

Just as a novelist turns his anxiety into a story in order to be able to control it to a degree, so a sick person can make a story, a narrative, out of his illness as a way to detoxify it.  –Anatole Broyard, in Intoxicated by My Illness

Serious illness, loss, or a cancer diagnosis are crises that also can trigger intense and abundant writing, resulting in books of poetry, like Karin Miller’s The Cancer Poetry Project or memoir, such as The Middle Place by Kelly Corrigan, In-Between Days, by Teva Harrison, or Barbara Abercrombie’s, Writing Out the Storm.  As Abercrombie demonstrates in her memoir, “storm” is an apt metaphor for writing inspired by a personal crisis.   Your days are full of turbulence, ups, downs and strong emotions.  You rage, weep, and sometimes, you may pour your emotions on the page.  Writing may become the calm for some, the eye of a hurricane, and a refuge as the storm howls around you.  Your writing may be raw and emotional, but that is often the first and necessary step to move toward understanding and insight.

During an extended period of personal crisis and loss many years ago, I discovered a kind of refuge in filling the pages of my notebooks with my feelings of despair and grief.  The solace I discovered in writing ultimately led me to initiating my first workshop for cancer survivors nearly 18 years ago.

When we see our suffering as story, we are saved. –Anais Nin, novelist, 1903-1977

Yet just as the weather and seasons change, so does the intensity of a crisis.  Gradually, there are moments of relative peace, good days, even moments of hope as the worst of the storm passes and life becomes more bearable. You gradually move from the shock of diagnosis, anxiety of surgeries and chemotherapy and toward recovery.  Your upheaval and turmoil begin to lessen, and you slowly adjust to a new normal.  If you’ve been writing about your cancer experience, your prose likely reflects the shift,  something I witness during every writing workshop series I lead for cancer patients and survivors.  Other life stories begin to emerge, not only those of cancer.  Hope shines through some of the poetry or prose that the group members share aloud.  The tissues are used less frequently, and there is often shared laughter.  All these are signs of healing, an improved ability to cope and weather whatever storms cancer creates in your life.

Gradually too, I encourage writing from other chapters of the group members’ lives, because it’s important to remember cancer isn’t your whole life story–only a part of it. To continue to repetitively write one’s sorrow and grief can easily become little more than rumination, the replay of old questions and sorrows that do little to improve your mood, perspective or ability to cope.  While it’s true that to write, you must be willing to step into your shadows and confront the darkness, to remain there defeats the healing benefits writing can have.  It’s why, in my cancer writing workshops, the prompts and exercises I offer to the groups gradually move from the predominant theme of cancer to a person’s whole life.

The real work of writing is to write under any sky, whether stormy or clear.  It’s how we capture the intricacy, the poetry, and stories our lives encompass.  It’s the work for everyone who wants to write for healing:  moving beyond the crisis and storm, see the world with new eyes, to awaken, notice and explore.  Perhaps you’ve been writing out of the storm called cancer, but ask yourself this:  as the sky clears, where will you find the inspiration and the motivation to keep writing?

A few years ago, I was stuck in a winter’s funk–erroneously called “writer’s block,” something I have since banned from my vocabulary.  Billy Collins, former poet laureate of the U.S., was speaking at a local university.  I bought tickets to the reading, eager to hear him speak again as I had several years earlier.  I was glad I did.  Collins’ poetry and wry humor were good medicine for my sagging muse and the “stuckness” in my writing.  Toward the end of the evening, Collins took a few questions from the audience. Asked by someone where he found his inspiration for his poetry, he paused only a moment before responding.  He found his inspiration, he said, by by simply noticing what’s in front of him, then describing himself as a poet who simply “looks out the window.”  If you read any of Collins’ work, you’ll quickly discover the most ordinary thing, like Cheerios, a teenage friend or his dog, contain the seeds of a delightful poem.

The following morning, still inspired by Collins’ reading, I opened my notebook, gazed out the windows in our front room for several minutes before I wrote my first sentence:  “I wish I could write a poem like Billy Collins…”  It was enough.  The words began flowing freely, something, I realized, about being present and paying attention .  I remembered the wisdom in Naomi Shihab Nye’s delightful poem, “Valentine for Ernest Mann,” inspired by a request from a young man attending a poetry conference who asked her to write him a poem and send it to him.  Nye responed to his request in the beginning line, “You can’t order a poem like you order a taco / Walk up to the counter, say, “I’ll take two…”  She then continued to describe the wonder of  poetry:

…I’ll tell a secret instead:

poems hide. In the bottoms of our shoes,

they are sleeping. They are the shadows

drifting across our ceilings the moment 

before we wake up. What we have to do

is live in a way that lets us find them.

 

(In:  Red Suitcase, 1994).

Cancer, other serious illnesses, trauma or loss  are shocks to our bodies and souls. When they happen, we need time to make sense of our emotions and come to terms with what life has presented to us.  Healing takes time; writing can help.  To move beyond the sorrow and pain, we must find a way to re-engage and  As we write, we begin to find new insights, capabilities we didn’t know we had, and move beyond our suffering.  What we have to do is live in a way that lets us find them. We learn to be present and grateful for the gifts of each new day and in doing so, we find glimmers of hope, happiness and of emotional healing.

Rita Dove, in her wonderful poem, “Dawn Revisited,” offers an invitation for us to awaken to the world and discover what it offers us:

Imagine you wake up

with a second chance: The blue jay

hawks his pretty wares

and the oak still stands, spreading

glorious shade. If you don’t look back,

the future never happens…

The whole sky is yours

to write on, blown open

to a blank page…

 

(From:  On the Bus with Rosa Parks, 1999)

Writing Suggestions:

The whole sky is yours / to write on…  It’s a great image, isn’t it?  Why not take a look out the window or go outside?  Open your eyes and notice how alive the world is with new possibility.  Afterwards, open your notebook to that blank page and begin with one thing you’ve noticed, one single thought or sentence.  Write out of your storm, or write of calm.  It doesn’t matter.  The whole sky is yours, whatever it holds.  Just write.

 

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