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Archive for the ‘writing as a way of healing’ Category

In a few days, my husband and I will board an Air Canada jet, crossing the Pacific, international borders and time zones as we travel to Okinawa, Japan, where my younger daughter and her family live. Thanks to my adventuresome daughters, I’ve visited many more foreign countries than I might have otherwise. Despite this, living with heart failure makes me a little more anxious about the long flight than I once was.   I seem to vacillate between excitement and nervousness with wild abandon.

I’m reminded of other border crossings we traverse in our lifetimes. Some of them are physical, like the border between countries, others are metaphorical, like crossing from youth into adulthood, graduate to professional, single to married, employed to retired.  The list of transitions, of borders real and symbolic, is endless.  Some crossings are welcomed; others, in the moments when the landscape of your life shifts without warning from familiar to unfamiliar, are not.  In those instances, you land in an unknown territory where what you took for granted, what you thought of as normal, are forever altered.  Not only is it disorienting, the experience can be frightening and lonely.

It’s the same strangeness, the unreality you experience after an unexpected and sudden death of a loved one, or hear your doctor say the word, “cancer,” or just days after unexpectedly collapsing on a walk, you lie in a hospital bed listening to a cardiologist’s use words like “heart failure, atrial fibrillation, ejection fraction, ventricular tachycardia, ICD” and struggle to make sense of them.  It’s those moments, when your life abruptly changes in ways you never imagined, that are burned into memory.

Looking back, perhaps there were warning signs, but ones you ignored or passed off as trivial.  Maybe you were sent for more tests, further consultation, or hospitalized for observation, but even then, you try to push aside the niggling worries.  “It’s probably nothing,” you tell yourself, but then all that changes as you watch your doctor’s face and hear, in those unreal, slow motion moments, “I’m sorry, but…”  And your heart already knows what the brain is trying to process as you’re thrust across the border into what writer Susan Sontag once named “The Kingdom of the Ill.”

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. (Susan Sontag, “Illness as Metaphor,” in The New York Times, Jan. 26, 1978)

Being diagnosed with any serious medical condition casts you into unfamiliar and treacherous terrain.  You feel disoriented, as if your body has betrayed you.  Maybe you’ve been given a roadmap upon entry, an informational pamphlet that defines your path of treatment,  but it can seem like a maze of different choices, ones that branch into multiple—and equally confusing—pathways.  Worse, your diagnosis is accompanied by strange sounding terminology, difficult to decipher and understand, leaving you feeling even more overwhelmed and confused.  Your life is suddenly turned upside down, and you confront a new reality you feel ill prepared to navigate.  This is the foreign territory of the body’s betrayal. Nothing seems quite real, and you feel lost and alone.

There’s a moment, not necessarily when you hear your diagnosis, maybe weeks later, when you cross that border and know in your heart and soul that this is really serious… The hardest thing is to leave yourself, the innocent, healthy you that never had to face her own mortality, at the border.  That old relationship with your body, careless but friendly, taken for granted, suddenly ends.  Your body becomes enemy territory …The sudden crossing over into illness or disability, becoming a patient, can feel like you’re landing on another planet, or entering another country… (Barbara Abercrombie, Writing Out the Storm, 2002).

As a heart failure patient, an unexpected outcome from my radiation treatment for breast cancer several years earlier,  I’ve been surprised by a lack of support programs and resources like those available in the cancer community, where I’ve been leading therapeutic writing groups for cancer patients for nearly twenty years, beginning years before I was diagnosed with heart failure.  The writing groups offer a safe and supportive environment in which people can write from the personal experience of cancer.  Illness or tragedy cracks us open.  Over the weeks together, patients’ stories become progressively deeper and more powerful as they explore the impact of cancer on their lives.  They are often surprised by the power of their words to touch others in the group as they are read aloud.  A strong sense of community is created in the sharing of one another’s stories.  People feel less alone as they go through surgery and treatment, even as they face death in a terminal diagnosis.  Writing is powerful medicine and part of the motivation for me to begin this blog–hoping it might encourage heart failure patients to also write and share their stories.

Somewhere out there in that darkness are hundreds of thousands … like myself …new citizens of this other country… In one moment of discovery, these lives have been transformed, just as mine has been, as surely as if they had been  plucked from their native land and forced to survive in a hostile new landscape, fraught with dangers, real and imagined.(Musa Mayer, Examining Myself:  One Woman’s Story of Breast Cancer Treatment and Recovery, 1994.).      

I have become more aware of how loneliness sometimes accompanies those who are living with heart failure, something I wrote about in my February post.  I am not immune to those same feelings, so when I was invited by a cardiac nurse to become a patient partner for Toronto’s UHN hospital community, I quickly agreed.  The Patient Partner program at UHN “recruits, selects, orients, and provides skill-building for UHN patients and caregivers, in order to contribute to important hospital planning and decision-making activities.”

I attended my orientation to the program in February, and afterward, I was eager for an engagement opportunity.  The planned “get acquainted” “evening with other patient partners was postponed due to a late February snowstorm, and my active involvement was put on hold until after my trip.  Nevertheless, I felt my motivation slipping.   The “get-together” was finally last week, but as the date arrived, I considered cancelling my attendance.  I’d had a full day of appointments and meetings, and my energy was waning.  Being an introvert by nature, making small talk with strangers is not something I enjoy, but I forced myself to go.  And frankly, I’m glad I did.

To my surprise, I experienced instant camaraderie with others in the room.  The program team facilitated a relaxed and friendly environment, ensuring we had time to have fun and get acquainted before breaking into small groups to discuss the pros and cons of the patient partner experience.  As we introduced ourselves, telling, in a few words, our different medical diagnoses and conditions, I was again humbled to hear others’ stories of illness, many enduring far more debilitating and serious conditions than I ever will.  Yet they’ve overcome extraordinary odds, are resilient and now actively participating in various hospital initiatives aimed at improving patient care, something I found truly inspiring.  I even had a surprise encounter with another patient partner.  We hadn’t recognized one another at first, but as we were talking, I realized he had been one of the managing partners at a former Toronto consulting firm where I worked right after graduate school.  In fact, he had hired me 33 years ago!  We laughed and marveled at the unexpected coincidence.  No longer “senior consultant” and “managing partner,” we are simply former colleagues who are now patients and volunteering at UHN.

It was a reminder of how illness levels the playing field between people, stripping us of the old symbols of status or hierarchy, humbling us and making us more compassionate.   In the kingdom of the sick, struggles, sorrow, and fear are part of the universal human experience.  We become more aware of our mortality.  The act sharing our stories of illness or suffering with one another helps to lessen our loneliness, make us feel less overwhelmed, even less sorry for ourselves.   We need one another as we navigate through the landscape called illness, to realize that even though we may be living with incurable conditions, there much more we are capable of being and of giving.

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, we help heal each other’s spirits.

–Patrice Vecchione, Writing and the Spiritual Life

Writing Suggestions:

  • Write about the moment you heard your diagnosis, “I’m sorry, but you have…” Describe that moment in as much detail as you can.
  • What is it like to cross the border into the unknown territory of life threatening illness?  What was it like at first?   What fears did you have?  What fears linger?
  • What old assumptions did you have to leave behind? How has your relationship with your body changed?
  • What has been the most helpful or supportive experience you’ve had as a patient?

 

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Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends.–Joan Didion, A Year of Magical Thinking

The sky was overcast yesterday morning, typical March weather, but yet, a somber sky that seemed to reflect the heaviness felt by so many around the world in the aftermath of tragedy–lives lost; others permanently changed, and all in an instant.  The first was the crash of the Boeing 737 Max in Ethiopia that killed everyone aboard, and the second, and, perhaps, more difficult to comprehend, the fifty victims of mass shootings at the two mosques in Christchurch, New Zealand, until now, a country spared the kind of violence experienced in so many other countries.

The scale of the two tragedies was nearly incomprehensible, but the outpouring of shock, condemnation around the world in the aftermath of the New Zealand mosque shootings was immediate.  Such events are at odds with our fundamental beliefs, including “that we live in a just world, and that if we make good decisions, we’ll be safe,” according to Laura Wilson, PhD, co-author and editor of The Wiley Handbook of the Psychology of Mass Shootings. We may stand in solidarity with New Zealand and the victims, but the question remains:  how has our world become so dominated by hatred and violence?

When people experience life-threatening or other traumatic experiences, their focus is on survival and self-protection,  according to Bessel van der Kolk, MD, discussing the nature of trauma in Dialogues in Clinical Neuroscience (2000 Mar; 2(1): 7–22) The traumatic experience triggers a mixture of numbness, withdrawal, confusion, shock, and speechless terror. The National Center for PTSD estimates that 28 percent of people who witness a mass shooting develop post-traumatic stress disorder (PTSD) and might be at greater risk for mental health difficulties compared with people who experience other types of trauma, such as natural disasters. The memory of the traumatic event may be replayed repeatedly, dominating victims’ consciousness. Abdul Aziz, a survivor of the mosque shootings, who’d also ran after the shooter and chased him away from the mosque, described how the event has traumatized  the survivors, “Each time we close our eyes,” he said, “we see all of the dead bodies around us.”

As I read different accounts of the shootings, I came across a poignant comment offered by an Australian news anchor, Waleed Aly,  also a Muslim.  He reflected on those who were in prayer at the mosques, moments before the first shots were heard:

“I was in the mosque today. I do that every Friday just like the people in those mosques in Christchurch today,” he said. “I know exactly what those moments before the shooting began would have been like. I know how quiet, how still, how introspective those people would have been before they were suddenly gunned down. How separated from the world they would have felt before the world came in and tore their lives apart.”

Shock and sadness will linger for a very long time among New Zealanders and many others around the globe, coupled with a sense of helplessness in the senseless, incomprehensible acts of hatred and violence that have become too frequent in our world.  Sadly, these events have become much too numerous to list in full, but for example, school shootings in the U.S., terrorist attacks of 9/11, the 2015 Paris and Beirut bombings, a resurgence of anti-Semitism, the ethnic cleansing of the Rohingya in Myanmar, the 2011 Norway attacks by a lone gunman, on and on.  Yet while we may first experience shock and disbelief,  do we also become numbed by the magnitude of events like these, ones reported in the news with ever greater frequency, yet ones we do not experience personally?

As I often do, I  have turned to poetry as a way to find the words that might express what I feel in the  wake of these deeply sad and disturbing events.   I recalled that after the tragedy of 9/11, poems about it were difficult to find.  At the time, I copied down a quote from the American Academy of Poets website, which said, “There seemed to be pressure on well-known poets to produce a poem, or refuse the opportunity, as former US poet laureate, Billy Collins ,did, saying  “the occasion was “too stupendous” for a single poem to handle.” He said that the terrorists had done something “beyond language.”  Again, years later and many more acts of unbelievable violence later, perhaps we still struggle to find the words “big” enough to help us comprehend these horrible events.  I know I do.

When we live with cancer or another chronic and progressive condition like heart failure, we come closer to the fact of our mortality.  From time to time, I admit the little shadow of fear of a shortened life sneaks up on me, but the events of this past week have again put things in a different light.  As I think about the victims of the shootings and the airplane crash, of the grief and suffering of loved ones and survivors, I am reminded to live with gratitude for the life I have.   I have to find hope, as we all do , that we can find ways and take actions to help lessen the suffering of those who have experienced these horrible, incomprehensible events.  Even though the elusive state we call peace seems ever more out of reach, I remember the words of St. Francis of Assisi:

…That where there is hatred, I may bring love.
That where there is wrong, I may bring the spirit of forgiveness.
That where there is discord, I may bring harmony.
That where there is error, I may bring truth.
That where there is doubt, I may bring faith.
That where there is despair, I may bring hope.
That where there are shadows, I may bring light.
That where there is sadness, I may bring joy.

(From: The Peace Prayer of St. Francis of Assisi)

Writing Suggestions:

This week, I invite you to reflect on the events of these past many days.

  • Write about losses you have experienced and how they changed your life.
  • Write about your own reactions to a tragedy like a mass shooting.  Did anything change in your thinking or actions?
  • Write about any other traumatic event you or a loved one has experienced and what helped you  heal.

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If this comes creased and creased again and soiled
as if I’d opened it a thousand times
to see if what I’d written here was right,
it’s all because I looked too long for you
to put in your pocket. Midnight says
the little gifts of loneliness come wrapped
by nervous fingers. What I wanted this
to say was that I want to be so close
that when you find it, it is warm from me.

“Pocket Poem,” By Ted Kooser; In:  Valentines: poems, 2008)

This past week, I addressed three brightly colored envelopes, red and pink, to the grandchildren who occupy such a big space in my heart.  I’ve been sending them valentines every February since they were first born, and for good measure, adding cards for their mothers, my daughters to the list.  One more card is hidden in my desk, which I’ll place on my husband’s desk early Thursday morning, a continuing tradition that, despite the many years that we’ve been together, remains intact.

Valentines, however entwined with rampant commercialism that accompanies all  holidays, began as a simple expression of love and gratitude, the first attributed to the Charles, Duke of Orleans, imprisoned in 1415 in the Tower of London after the Battle of Agincourt.  As the story goes, he passed his time writing romantic verses for his wife, who was still living in France.  Today, nearly sixty of the Duke’s poems remain and are considered as the first modern-day valentines.  Yet nearly three hundred years passed by before valentines became popular, their verses created by valentine writers in England in booklets that could be copied on decorative paper.  By the early 1800’s, valentines were constructed from simple black and white illustrations, painted and assembled in factories.  By the mid 1800’s, valentines were adorned with lace and ribbons, included affectionate messages and illustrations of turtle-doves, lovers’ knots in gold or silver, cupids and bleeding hearts.  Even though the valentines on display racks in card shops and drug stores now range from the flowery to the comical, I was surprised to learn that more cards are exchanged on Valentine’s Day than other time of the year except, perhaps, Christmas.

Like many of you, I first experienced the exchange of Valentine’s cards in kindergarten.  My teacher decorated a large hat box with red and white paper hearts, lace and ribbons. This, she explained was our valentine card mailbox, and each student was instructed to bring one valentine for each classmate, to be placed in the “mailbox” and exchanged at our Valentine’s Day party.  The excitement we all felt was palpable, and early on the morning of February 14, I awakened  and slipped out of bed quietly while my parents still slept.  I tiptoed into the living room of our upstairs apartment where a package of valentines lay on a card table, waiting to be addressed.

I was too excited to wait for my mother and went to work, painstakingly printing the one name I knew how to spell in dark blue ink.  By the time my mother walked into the room,  I’d addressed over two-thirds of the packet of 32 and proudly showed her my handiwork.  I didn’t expect her reaction, one of shock and “Oh, no, Sharon…what have you done?”  I’d addressed all the cards to my very best friend, another girl with the same name as mine, carefully printing, “To Sharon H., From Sharon B.” just as we were distinguished in our classroom.  My mother managed to salvage the remaining third for other children in the class, but the memory of that morning lingers.  As my teacher pulled one card after another from the decorated box and called out each recipient’s name, one classmate received many more valentines than anyone else.  “Why, here’s another card for Sharon H.,” she said, casting a knowing smile in my direction.  “I wonder who it’s from?”

Ted Kooser, former poet laureate of the U.S., began a Valentine’s tradition in 1986 that lasted nearly twenty years.  According to NPR, each February, many women around the country and found a postcard in their mailbox bearing a red heart with a poem on it-a valentine from Kooser.  He’d been inspired by a friend  who sent handmade valentines out each year, and in 1986, he sent his first Valentine, a “pocket poem,” to approximately 50 women he knew or had met at his poetry readings.

Over the years, whenever he made a public appearance, and with the blessing of his wife, Kooser invited women to add their names and addresses to his mailing list.  The list quickly grew from 50 in 1986 to 2700 by 2007, and his wife prompted him to “rein it in,” since by then he was spending nearly $1,000 in postage and printing. The enduring result was a collection of the poems he’d sent to the women on his mailing list, simply titled Valentines: poems (U. of Nebraska, 2008).  Valentine’s Day, he reminded his NPR audience in a 2008 All Things Considered broadcast, is a great holiday for a poet or anyone.  “It’s not tied up with anything other than expressions of sentiment,” he said.  Kooser remarked that his wife was very patient with the project, since he always wrote “special valentines” for her.

If  a loved one or friend is going through cancer treatment, showing your support in different ways can be like giving a valentine to them–ways that matter during the roller coaster ride of cancer diagnosis and treatment.  A dinner out or a gift of chocolates are unlikely to appeal to someone going through treatment, but there are, as MD and Oncologist/Hematologist  Cynthia Chua advises, “some wonderful things you can do for your Valentine… sometimes just ‘being there’ is a great gift. Just spend the day with your Valentine and show them how much you care.” She and writer Jennifer Mia offer some suggestions for celebrating Valentine’s Day together with someone who has cancer:

  1. Write a love note or make a card.
  2. Serve them breakfast in bed
  3. Pick up a stuffed animal for them to take to the next chemotherapy session.
  4. Rent a movie to watch together.
  5. Forgot to buy a card to send? Then send an e-card  or make time for a telephone call.
  6. Give the gift of journaling–a notebook of blank pages to write in.
  7. Offer a soft, cozy blanket for time in chemotherapy or a cold hospital room.

But let’s be clear:  You don’t need a Valentine’s Day to express that you care for someone.  You can do this at any time by sending a card, note, email or simply giving him or her a call to show you are thinking about them.  What matters is that you take the time to do it.  You might be surprised at how much it means to someone simply to know that someone cares or is grateful for him or her.  A few weeks ago, I gave my cardiologist a note of gratitude, written in the form of a somewhat humorous poem,  and what I discovered, in doing so, was how very much she appreciated it.

What matters in this world of busy-ness, stress, economic downturns, political drama or the instant and abbreviated communication we’ve succumbed to on the internet, is simply taking the time to express appreciation, concern or gratitude for the people you care about.  It’s a great gift.  You don’t have to wait for February 14th or any other specified holiday.  The simple act of pausing to remember those we care about and those who have cared for us in times of struggle, hardship or illness, reminds us of what matters most in our lives:  people, friendship, love.

“A Perfect Heart”

To make a perfect heart you take a sheet

of red construction paper…fold it once,

and crease it really heard, so it feels

as if your thumb might light up a match

 

then choose your scissors from the box.  I like

those safety scissors with the sticky blades

and the rubber grips that pinch a little skin

as you snip along.  They make you careful,

just as you should be, cutting out a heart

 

for someone you love.  Don’t worry that your curve

won’t make a valentine; it will.  Rely

on chewing on your lip and symmetry

to guide your hand along with special art.

And there it is at last:  a heart, a heart!

(By Ted Kooser, in:  Valentines: poems, 2008)

Writing Suggestions

  • Try writing a valentine this week, a poem, a postcard, even a letter—to someone you appreciate.
  • Why not write yourself a valentine,  saving it for a time when you might need a little self-care.
  • Perhaps you have your own memory of a long-ago Valentine’s Day.  Write it.
  • If writing a card or poem is not something you find easy to do, then pick up your phone and make a call to someone you care about.   Send an email or a Facebook message.  Wish them a happy Valentine’s Day, and let them know you are thinking about them.

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Her death came quietly, and I suppose, unexpectedly for so many of us.  Her obituary, together with a photograph, appeared in the New York Times: “Mary Oliver, a Pulitzer Prize-winning poet, whose work, with its plain language and minute attention to the natural world… died at 83…”  Diagnosed and treated for lymphoma since 2015, the many obituaries paid tribute to her legacy of award-winning poetry and prose, noting how she “often described her vocation as the observation of life.”  Yet it was her poem,  “When Death Comes,” from her first volume of New and Selected Poems and appearing in the Washington Post obituary, that, for me,  truly captured the person behind the poetry, describing how she intended to approach death, and yet making it clear how she would continue to live for whatever time she had remaining.

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;
when death comes
like the measle-pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth,
tending, as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.

I don’t want to end up simply having visited this world.

(In:  New and Selected Poems, V. 1, 2004)

Oliver’s words lingered in my mind for days, not only a statement of how she lived and wrote, but the legacy she wished to leave behind.  It left me thinking about obituaries written for many I’ve known and they did not often capture the essence of the person.  I recalled an article I’d read several years ago by writer Lloyd Garvey, remarking that sometime earlier, “somebody quite wise–I think it was my rabbi–suggested that people should write their own obituaries.  Now.  Regardless of age or medical condition. That way,” he said, “you’ll think about how you want to be remembered and what you want to accomplish in the rest of your life.”  (The Huffington Post, January 16, 2009).

Former leadership guru, Peter Drucker, once told a story in The Daily Drucker: 366 Days of Insight and Motivation for Getting the Right Things Done:  “When I was thirteen I had an inspiring teacher of religion who one day went right through the class of boys asking each one, “What do you want to be remembered for? None of us, of course, could give an answer. So, he chuckled and said, “I didn’t expect you to be able to answer it. But if you still can’t answer it by the time you’re fifty, you will have wasted your life.”  The question, “What do you want to be remembered for?” is one, he stated, that induces you to renew yourself.  You’re forced to see yourself as a different person:  the person you want to become.

In her poem, “Cover Photograph,” Marilyn Nelson answers the question, “What do you want to be remembered for?”  with the repetition of the phrase “I want to be remembered” in each stanza,  describing the different aspects of herself  that define who she is but also, who she wants to become:

I want to be remembered
As a voice that was made to be singing
The lullaby of shadows
As a child fades into a dream…

I want to be remembered
as an autumn under maples:
a show of incredible leaves…

I want to be remembered
with a simple name, like Mama:
as an open door from creation,
as a picture of someone you know.

(In:  Mama’s Promises:  Poems, 1985)

As I grow older and perhaps, because my life has been touched by cancer and by heart failure, I think more often about how I’d like to be remembered when my time comes. While I’m not eager to consider mortality, asking myself how I want to be remembered raises the question of what else and what more I want to do with my life.   I agree with Drucker:  Asking yourself, “What do you want to be remembered for?” is one that induces you to renew the person you are…to be, as Mary Oliver described,  a “bride to amazement” or bridegroom “taking the world in his arms,” to be fully alive–and grateful– for however long we inhabit the earth.

Writing Suggestions:

How you want to be remembered?   What more do you envision for your life?  What things do you want yet to do before you die?  What is the legacy you wish to leave behind?

This week, try writing your own obituary or eulogy. What would you say about yourself?  Think about the things that really matter, the things that will ultimately define your life’s legacy, and the way in which you would like to be remembered by others.  What more do you want to do with your life?  You might even begin with Mary Oliver’s words, “When death comes,” or Marilyn Nelson’s, “I want to be remembered…”

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“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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