May 1, 2022: The Rx of Friendship

I’ve been living with the progressive condition of heart failure for over 13 years now. And for the bulk of that time, I have been relatively stable.  That long period of stability was recently disrupted, however, by an “episode” or two of nearly losing consciousness in late March, which resulted in some hastily arranged tests, lab work and  appointments with different members of UHN’s cardiology team.  While I consider myself lucky to have the extraordinary quality of medical care than I do, the impact of the past few weeks was more emotional for me than I anticipated.  In truth, my emotions took a veritable ride on a roller coaster following this latest episode. 

As part of the ongoing treatment and evaluation, another medication has been added to my growing handful of pills, and I’m scheduled for a transesophageal cardiogram later this month to determine if I am a viable candidate for a mitral clip, which could help minimize the leakage from my mitral valve.  “Progressive” has taken on more meaning, disrupting my sleep with late night intrusions of worry and anxiety.    It’s no surprise then, that my emotions have been in a bit of a slump.  Yet, thanks to the tender care and concern from my husband, daughters and some wonderful Toronto friends, my mood has finally lightened.

 “Oh you gotta’ have friends,” Bette Midler belted out on her 1972 album, The Divine Miss M.  How well I know that.  During the aftermath of my first husband’s death many years ago, I nearly wore a permanent groove in the vinyl, playing that  one song again and again. Thousands of miles from my family, I was in sore need of friends, and thankfully, I had them in a  handful of dear Nova Scotian friends who stood by me, offering immeasurable support and love to my daughters and me.  I have never forgotten their concern, support and love—and I remain connected with them now, even all these years later.

I am grateful to have a  handful of enduring friendships in my life–one even going back to grade school.  Yet in this extended time of COVID and its variants, my husband and I have seen or heard far less of our friends than we usually do.  I’ve missed the conversations, comfort and closeness that are unique to long friendships.  So it was a dose of good medicine to be invited to our friends’ home for a casual Friday evening dinner together—all of us still only slowly venturing into public places.  But that afternoon,  I had been out of sorts, my blues lingering like a relentless band of low pressure.   I finally complained that I really didn’t feel like going out. “Too late to cancel,” my husband said. “Besides, it’ll do you good.”   He was right:  it did. 

Our friends are wonderful hosts, and dinners together are always relaxed, with great conversation and more than a little laughter. Friday evening was no exception, and the time together did much to raise my spirits.  When we stood to don our coats for the ride home, our hostess remarked, “It’s good to see you smile, Sharon.”  I realized how true her words were.  It felt good to smile, to share stories around the table and bask in the warmth of our friendship.  I was still smiling as we got into the car, and two hours later, as I got into bed, the smile remained. I was grateful for the evening and the friendship we shared.  Then again last night, another friend invited us for dinner on the spur of the moment.  There was no special occasion, she said, “I just want to do it.”  Later, as we returned home , any lingering doldrums I felt had been feeling had completely vanished.  I felt more like “myself” again, something I owe to the good medicine of close friends.   

Lydia Denworth, author and contributing editor at Scientific American, whose book, Friendship:  The Evolution, Biology and Extraordinary Power of Life’s Fundamental Bond, published in 2021, sees friendship is a lifelong endeavor, something we should always be paying attention to throughout our lives.  Here I pause, remembering that there have been times, despite how important my friendships are to me,  that I have sometimes let them take a back seat to an over busy, over demanding life.   Yet it is our friendships we benefit from, as research  has demonstrated many times, helping us find meaning or purpose in life, and important to our health and longevity.   “Good friends are good for your health,” the Mayo Clinic states,  and matter to our health in multiple ways:

 “Friends… play a significant role in promoting your overall health. Adults with strong social support have a reduced risk of many significant health problems, including depression, high blood pressure and an unhealthy body mass index (BMI). Studies have even found that older adults with a rich social life are likely to live longer than their peers with fewer connections.

Do you remember the song “You’ve Got a Friend?”  Written and first recorded by Carole King in 1971, singer James Taylor’s recording of it that same year became the number one song on Billboard’s “Hot 100.”  It’s been sung and recorded by many other vocalists since, the lyrics an enduring testimony to the importance of those true and enduring friendships in our lives.

[Chorus]

You just call out my name

And you know wherever I am

I’ll come runnin’

To see you again.

Winter, spring, summer or fall

All you have to do is call

And I’ll be there, yes I will

Now ain’t it good to know

that you’ve got a friend…

Writing Suggestions:

Write about friendship this week.  What role do your friendships play in your life?  Why do they matter to you?

We have more than a few good friends over time—and our friendships can change as our lives do.  Write about a best friend.  Or a friend who has been invaluable to you at a difficult time.  Or writing about losing a friend to time and distance.

How do your friends make a difference in your life?  Write about a friend whose friendship has stood the test of time and life stages.

How have you shown up as a friend for others? 

During the prolonged pandemic of the past two years, how have you sustained and nurtured your friendships, whether close or far away?

April 18, 2022: The Stories In Our Scars

For every wound there is a scar, and every scar tells a story.  A story that says, “I survived. —Fr. Craig Scott

I acquired another bodily scar this past week. Although it was only a minor brush with the metal door frame, it tore skin from my arm and bled profusely—an unfortunate side effect from medications I take for my heart condition.  It’s still healing, but I complained more about having another scar on my arm than the pain and discomfort it caused.  It will fade in time, but that is little comfort to me at the moment.  But I have complained many times before about the scars my body has accumulated over the years: some from surgeries, others from a rough and tumble rural childhood, and several from everyday minor mishaps.  Yet, like them or not, each scar holds a memory and often, a larger story associated with it, not unlike the one in a poem by author Michael Ondaatje. It begins:

A girl whom I’ve not spoken to
or shared coffee with for several years
writes of an old scar

On her wrist it sleeps, smooth and white,
the size of a leech.
I gave it to her 
brandishing a new Italian penknife
. Look, I said turning,
and blood spat onto her shirt.
..

My hand moves reflexively to the scar behind my hairline as I write this sentence.  The scar is decades old, but still visible if I pull my hair back from my face.  Narrow and pale, it runs from one ear over the top of my head down to the other.  It’s a scar that carries the story of a childhood bicycle accident, severe concussion, recovery, and later, complications that nearly resulted in death in my early teens. It is also he evidence of a gifted neurosurgeon’s work and of my survival.

Whether hidden or visible, our scars tell stories of our lives.  Near my right ankle, another scar, pale now, calls up the memory of the cold, sharp edge of a metal tent stake slicing into my leg.  I was in my teens, chasing my younger brother across a Northern California campground.  He had snatched my diary from my tent and was making a fast getaway across the campsite.  There are others scars too: a half moon on my left calf, the result of a dare to a cousin, warning me his bicycle had no brakes. I didn’t believe him. Others were acquired in adulthood:  one on my left breast, left by a surgeon’s knife, another marking the incision above my heart where my defibrillator was inserted, and still others, but ones invisible to the eye: the residue of love, loss and betrayal, emotional wounds acquired in living.

We remember the time around scars,
they freeze irrelevant emotions
and divide us from present friends
I remember this girl’s face,
the widening rise of surprise.

And would she
moving with lover or husband
conceal or flaunt it,
or keep it at her wrist
a mysterious watch.
And this scar I then remember
is a medallion of no emotion

(“The Time Around Scars,” by Michael Ondaatje, in:  The Cinnamon Peeler, 1997)

“The lessons of life,” author Wallace Stegner wrote, “amount not to wisdom, but to scar tissue and callus.” Our scars, the scar tissue we accumulate, tell the stories of living, of events that changed us:  life-saving surgery, the traces of shrapnel marring a face, disfigurement from accidents, broken hearts, and unexpected tragedies.  They are the evidence of living, of lessons painfully learned, the stories we remember and some we may try to forget. 

My mother parts her hair

and leans over

so I can touch the scar.

“No, she says, you don’t remember,”

and goes back to making the bed,

snapping a sheet

as folds of lightning spark…

The ambulance came right away,

my mother says, pulling the corners tight.

“There was no other woman…”

(“Scar,” by Wendy Mnookin, in The Cortland Review, 2001)

In a July 21st, 2009 New York Times column, Dana Jennings, editor and prostate cancer survivor, reflected on his scars and what they represented to him.

Our scars tell stories. Sometimes they’re stark tales of life-threatening catastrophes, but more often they’re just footnotes to the ordinary but bloody detours that befall us on the roadways of life…my scars remind me of the startling journeys that my body has taken — often enough to the hospital or the emergency room…

But for all the potential tales of woe that they suggest, scars are also signposts of optimism. If your body is game enough to knit itself back together after a hard physical lesson, to make scar tissue, that means you’re still alive, means you’re on the path toward healing.

Scars, perhaps, were the primal tattoos, marks of distinction that showed you had been tried and had survived the test… in this vain culture our vanity sometimes needs to be punctured and deflated — and that’s not such a bad thing. To paraphrase Ecclesiastes, better to be a scarred and living dog than to be a dead lion.

Winged Victory, a pictorial essay celebrating women survivors of breast cancer by photographer Al Myers, featured women half-clothed, breast scars visible.  However, Myers portrayed them as more than survivors.  They were all victors, scarred, yes, but beautiful.  In the book’s foreword, Stanford psychiatrist Dr. David Spiegel wrote, “…they present their bodies and themselves with humor, sadness, vulnerability, honesty. They challenge us to look beyond what is missing, beneath the scar.”  (Winged Victory:  Altered Images:  Transcending Breast Cancer, 2009)

“To look beyond …beneath the scar.”  Jennings’ also expressed similar sentiments:  It’s not that I’m proud of my scars — they are what they are, born of accident and necessity — but I’m not embarrassed by them either. More than anything, I relish the stories they tell. Then again, I’ve always believed in the power of stories, and I certainly believe in the power of scars.

As much as I’ve sometimes bemoaned the accumulation of some of my scars, I admit I too share Jennings’ views.  Scars are testaments to living, to all that life may throw at us.  They are our medals, of a sort:  evidence of our ability to heal and survive.

SCARS

By William Stafford

They tell how it was, and how time

came along, and how it happened

again and again.  They tell

the slant life takes when it turns

and slashes your face as a friend.

Any wound is real.  In church

a woman lets the sun find

her cheek, and we see the lesson:

there are years in that book; there are sorrows

a choir can’t reach when they sing.

Rows of children life their faces of promise,

places where scars will be.

(In:  Americans’ Favorite Poems, M. Dietz & R. Pinsky, Eds.,1999)

Writing Suggestion:

Our scars: evidence of life and survival.  What stories are hidden in yours?

Using the prompt, “Every scar tells a story,” Consider the scars you’ve acquired over time, whether visible or hidden, physical or emotional.   What memories are triggered by your scars?  Choose one and tell the story beneath the scar.

What Illness Teaches Us About Life

“It’s not that we have a short time to live,” the Roman philosopher, Seneca wrote in his treatise, On the Shortness of Life (49 AD), “but that we waste a lot of it…life is long if you know how to use it.”  Knowing how to use life is something that requires, for most of us, occasional review and re-setting of our goals and intentions for ourselves.  But I have come to believe that my most important life lessons have come from loss, hardship, and living with progressive condition. Such experiences force behavior changes on us, like it or not.

I’ve experienced challenging life events as we all do from time to time, but more than any experience, it’s living with heart failure that has forced me to confront the reality of mortality and relative shortness of life.  Diagnosed in 2008 after collapsing on the pavement, my initial panic and fear gradually subsided the first few years as my life, for the most part, seemed to go on as usual.  I’d never had my defibrillator go off, and as a result, even questioned one doctor if, in fact, it had really been necessary!  For the first few years, at every follow-up appointment, the routine, “you’re doing just fine” reassurance from my then-cardiologist lulled me into a less “vigilant” state, and gradually, my life became as hectic and busy as it had been before.   

When we returned to Toronto in 2017, I had the good fortune to become a patient of one of Canada’s top cardiologists, and in the first appointments, the thorough examination, tests and education I experienced (a far cry from anything I’d gotten when I was first diagnosed) were somewhat unnerving.  I realized that “doing just fine” had not exempted me—or my heart—from the progressive nature of heart failure.  Medications, diet, and exercise could help slow the progression, but not cure it.  I felt the fear and anxiety rise to the surface.  I think it was only then that I truly began to face the prognosis and ramifications of the heart ailment I was living with.  I doubt I had truly confronted my own mortality, or rather, fear of a shortened life, despite the fact so many of the men and women who’d come to my expressive writing groups had often written about it.  It was my turn to confront my fear.  Yet again, and as I met so many heart patients with far more serious conditions than my own, I slipped into that mental zone of “by comparison, I am doing really well.”

Then last week, my heart served up a reminder to me of its progressive nature—and of my need to periodically re-assess my life, change what needs changing and keep my sites on what matters most.  I admit an initial bit of denial.  I tried to ignore the symptoms—some lightheadedness, then nearly passing out one evening, and finally, at the insistence of my husband, notifying the clinic a day later to report the symptoms.  The response was immediate.    I spent much of last week in the cardiac clinic for a thorough going over of my defibrillator function, bloodwork, ECG, and at week’s end, being fitted with a Holter monitor (a small, wearable device that records the heart’s rhythm) to better evaluate what is happening with my heart) for 24 hours a day for two full weeks. (I am now relegated to my most unfashionable gear to cover up the device as much as possible—nevertheless, it’s a trivial inconvenience.)

I believe that many of my greatest teachers are the cancer and heart patients who have shared their experiences, fears and challenges in my writing groups.  There is no false bravado.  They write courageously and honestly.  By writing, they release the emotions and experiences triggered by serious and unforgiving illnesses and progressive conditions.   Some are painfully aware they’ve been given a death sentence—a terminal diagnosis—and they grapple with impending death.  Others experience the after-effects of surgeries and treatments that permanently alter their bodies and their lives. Time and again I am moved and humbled by their honesty, courage and determination to live whatever life they have left as fully as possible.  They are clear about what matters most. Living intentionally requires not only the will to do so, but courage, and for many of us, real change and commitment.

Perhaps the question to ask ourselves is not so much, “how do I want to live?” but “how do I want to live the life I have left?”  That’s the irony I suppose, that Seneca referred to in his treatise:  we need to be faced with the “shortness” of life to truly learn how truly live.

I recall a poem a former mentor shared many years ago in a creative writing workshop.  Entitled “What Matters Then,” the poet, Margaret Robison, asks the question “what matters then? of the reader and, beginning the image of a single gardenia on a branch, moves us quietly to the essential, from bush to branch to a single flower.  For me, it speaks of the necessity of winnowing down to the essential and the certain beauty of it.

…What matters then?

A single gardenia broken

from the dark-leafed branch.

What matters then?

The dark leafed bush.

What matters then?

The gardenia.

–Margaret Robison, Red Creek, A Requiem, 1992

What matters to me?  That I live as fully as possible each day.  That I have time with close friends and especially my family: husband, daughters and grandchildren.  Especially my grandchildren—funny, bright, loving– they are the best medicine for my metaphorical and physical heart.   That I give back for as long as I am able, continuing to volunteer in leading writing groups for those living with life-threatening illnesses.  I must make time for solitude and reflection; my morning writing practice, part-meditation, part-creative work, is critical to my daily life.  I am intent on continuing to live as healthy and active daily life as I can.  Yet, I must practice humility, recognize and accept my limits, and not unimportantly, make gratitude as a daily mantra.

What has living with a serious condition like heart failure taught me?  I think it has taught me how I want to live to live for however long a life I have.   And that’s a lesson worth living, isn’t it?

Waking up this morning, I smile.

Twenty-four brand new hours before me.

I vow to live fully in each moment

and look at all beings

with eyes of compassion.

-Ticht Nhat Hahn, Buddhist teacher

Writing Suggestions:

Write about the experience of becoming a patient, of living with a life-threatening illness or condition. What have you learned about yourself?

  • How has your life changed—for the positive and the negative?
    • How do you want to spend your days–to live your life?
    • What matters most to you?

March 13, 2022: Communicating the Illness Experience Through Metaphor

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.

–Susan Sontag, Illness as Metaphor, 1978

Poetry and medicine share a long history, dating back to the Greek god Apollo, who was responsible for healing and poetry.  Today, the use of metaphor, a poetic tool and figure of speech that compares things seemingly unrelated is also common in illness and everyday life.  Think of how we use sports metaphors almost unconsciously to describe daily life.  In the workplace, you strive to be a “team player” or be encouraged to “run with a good idea.”  In a budding romance, a boy might “make a pass at someone,” or in an emotional argument between two people, one is the other he is “way out of bounds.”

There’s little doubt that metaphors are visual and illustrative, but they can also run the risk of creating stereotypes and confusion, even becoming clichés.  Some, like the sports and military metaphors so common in everyday language are frequently used to describe one’s medical experience.  Jack Coulehan, MD and Poet, in a 2009 publication, discussed some of the most prevalent metaphors used in medicine, among them, parental metaphors (“She’s too sick to know the truth”), engineering metaphors, (“He’s in for a tune-up”), and the military metaphor, (“the war on cancer”). (Perspectives in Biology and Medicine, v. 52, no. 4 (Autumn 2009):585–603 © 2009 )

 In a 2014 article entitled, “The Trouble with Medicines’ Metaphors,” author Dhruv Khullar, MD, wrote: The words we choose to describe illness are powerful. They carry weight and valence, creating the milieu in which goals of care are discussed and treatment plans designed. In medicine, the use of metaphor is pervasive. Antibiotics clog up bacterial machinery by disrupting the supply chain. Diabetes coats red blood cells with sugar until they’re little glazed donuts. Life with chronic disease is a marathon, not a sprint, with bumps on the road and frequent detours…  Military metaphors are among the oldest in medicine and they remain among the most common. Long before Louis Pasteur deployed imagery of invaders to explain germ theory in the 1860s, John Donne ruminated  on the “miserable condition of man,” describing illness as a “siege…a rebellious heat, [that] will blow up the heart, like a Myne” and a “Canon [that] batters all, overthrowes all, demolishes all…destroyes us in an instant.”  

As Khullar points out, “…we’ve internalized these metaphors, so much so that we often may not recognize how they influence us.”  And while Susan Sontag famously argued in her book, Illness as Metaphor (1978) ” that illness is not a metaphor, and [that] being ill—is one most purified of, most resistant to, metaphoric thinking,” the fact is that metaphors can and do help us understand one another’s experience.  They are visual, visceral and provide a shorthand route to our emotions.  They offer a way to make sense of the emotional chaos that often accompanies a diagnosis of serious illness or physical condition.  Metaphors help to communicate our feelings and experience to others, and in turn, doctors’ use of metaphors help patients understand the ramifications of their illnesses. A 2010 study published in the Journal of Palliative Medicine, found that “Physicians who used more metaphors were seen as better communicators. Patients reported less trouble understanding them, and felt as though their doctor made sure they understood their conditions.”

Metaphors get our attention.  They give us a vivid way to communicate and understand the experience of illness.  For example, consider the poem, “The Ship Pounding,” by former U.S. poet laureate, Donald Hall.  The reader is offered a glimpse into his feelings and experience of having his wife, poet Jane Kenyon, frequently hospitalized in the final months of her struggle with leukemia.   He describes the hospital using an image of a ship filled with ill passengers, heaving in rough waters, to describe and help the reader see and understand his experience.

Each morning I made my way   

among gangways, elevators,   

and nurses’ pods to Jane’s room   

to interrogate the grave helpers   

who tended her through the night   

while the ship’s massive engines   

kept its propellers turning…

At first, the narrator is hopeful:

The passengers on this voyage   

wore masks or cannulae

or dangled devices that dripped   

chemicals into their wrists.   

I believed that the ship

traveled to a harbor

of breakfast, work, and love.   

But the illness his wife has is incurable, evident in his final lines, as the narrator waits for his wife’s call, knowing he must be ready to:

… make the agitated

drive to Emergency again

for readmission to the huge

vessel that heaves water month   

after month, without leaving   

port, without moving a knot,   

without arrival or destination,   

its great engines pounding.

(From Without, 1998)

Anatole Broyard, whose book, Intoxicated by My Illness and Other Writings on Life and Death (1993), used metaphors to convey his experience of terminal prostate cancer, stating: Always in emergencies we invent narratives. . . Metaphor was one of my symptoms.  I saw my illness as a visit to a disturbed country. . . I imagined it as a love affair with a demented woman who demanded things I had never done before. . .   When the cancer threatened my sexuality, my mind became immediately erect.”

Arthur Frank, Canadian sociologist and author of At the Will of the Body:  Reflections on Illness (1991), his memoir of his heart attack and cancer, described his illness and recovery as a “marathon.”  Frank was a runner, and the physical and mental demands of the marathon were apt comparisons to describe his experiences of illness.

Kat Duff, author of The Alchemy of Illness, (1993), was diagnosed with chronic fatigue and immune system dysfunction syndrome.  She explored illness narratives as a way to understand the broader nature of illness    She compared her illness to a landscape, a wilderness, or coral reef, and regaining health as an adventurous voyage through it. 

Metaphors–so common in poetry and the arts–are invaluable in helping us to communicate and understand the experience of illness.  They allow doctors to develop a common language with patients, and they give those of us living with serious or chronic heart conditions a way to express what we feel and experience.   Perhaps Anatole Broyard said it best. As he reflected on his cancer experience he said, “Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers.” What do you think?

Writing Suggestions

  • Think of how you describe your condition to others.  Are you aware of the metaphors that naturally come to mind?  Explore these.  What images do they convey?  How do they help you communicate your condition to others in your life?   
  • Stuck?  Begin with a phrase such as “Heart Failure is like a…”  or “Cancer is like…”  and finish the thought, noting what image or word emerges.  Try listing several.  Then, take the one that is most compelling for you and explore it further in writing.  Remember, write quickly, without editing.  Set the timer for five or ten minutes and keep your pen (or fingers) moving. 
  • Once you’ve finished, read over what you’ve written.   Are there any surprises?  Did you discover any unexpected metaphors?  How have your metaphors helped you to explain your experience of illness to others?  Describe one or two instances.
  • Does your physician metaphors to help you or other patients understand the full extent and prognosis of your condition or illness?   What types of metaphors do you hear most often?
  • You may want to go deeper in your writing.  Our metaphors inspire a poetry, such as Donald Hall’s, or they can communicate aspects of your illness experience to others. Let your metaphors be the inspiration for a poem or story.

January 16, 2022: Altered Body: Altered Self-Image

And the body, what about the body? –Jane Kenyon

“Would you be willing to write a short piece for the patient website?”  It was a request sent in a short email from Samantha, who does much of the behind-the-scenes coordination and publicity for “Writing the Heart,” the expressive writing workshop I lead through Ted Rogers Center for Heart Research.  I didn’t hesitate and said, “yes,” and agreed to brainstorm possibilities together in a short virtual meeting two days ago.   What I didn’t expect was to find tears running down my face as we explored possibilities.  The topic I suggested as we chatted was, as it became apparent (no pun intended…) close to my heart.

In my cancer writing groups, I often invite the participants to explore their feelings about their bodies, before and after a cancer diagnosis.  Cancer patients often feel betrayed by their bodies—and at the same time, they are more apt to define cancer as an invader, a foreign aggressor.  The metaphors they use often include a sense of fighting back, overcoming the invading cancer cells.  Bodies are altered; body parts sometimes lost or scarred by the disease or treatment.  Yet cancer research and treatments continue to advance, and there is, for the majority of those I’ve experienced, hope for a cure.

 By contrast, the heart is our life-giving pump, not an invader, and while advances have been made in heart transplant and medications for heart patients, heart failure is not curable.  It is progressive, and the medications I take twice daily are those that help aspects of heart functioning so that I might “keep going a little longer.” The irony for me is that in all likelihood, as my cardiologist suspects, my cancer treatment twenty-one years ago, specifically, the radiation to my left breast, is likely the culprit in my diagnosis of heart failure.

Since my diagnosis of heart failure in 2008, I have, in comparison to so many people similarly diagnosed, been doing relatively well, and given the privilege to encourage and hear cancer and  heart patients’ stories as I do in our writing groups, I am humbled:  my own experience seems relatively lightweight.  More than a few times, I’ve said to my husband that in comparison to other heart failure patients, I am very lucky.  So when I suggested to Samantha I could write a piece on coming to terms with an altered self-image due to heart failure, I was surprised to find my eyes teared up quite unexpectedly. 

And while I do feel “lucky” in many ways, it also masks the emotional impact of living with heart failure I’ve experienced, a progressive condition that, thus far, has no cure.  I was first diagnosed in late 2008 after collapsing on the sidewalk while I was walking my dog, rushed to emergency, hospitalized for three days of tests and observation, undergone an angiogram and, without much discussion or explanation, while I was still regaining consciousness after the angiogram, asked if I “wanted” an ICD.  Unsure if an ICD was warranted, I reluctantly agreed when the cardiologist said, “think of it as insurance,”  and after it was inserted, then spent another three nights in the hospital.   I spent the days dazed and feeling as if I was living in a strange dream. The only heart failure patient I had ever met was a 90-year-old neighbor.    

For the first months after the entire episode, I settled back into a life that was relatively unchanged.  Other than the bulge on the left side of my chest, nothing seemed very different as far as my daily life was concerned.  I had regular cardiac visits, but they were little more than a 15-minute conversation and the assurance, “You’re doing fine.”  My ICD checkups came every six months—and once I’d struggled to understand the technological explanations by the ICD specialist, assured “everything was fine.”  I felt like my ICD got more attention than I did in my hospital visits!  What wasn’t at all clear to me is that my heart failure was progressing, and it wasn’t until we’d  returned to Toronto, and I became a patient at the Peter Munk Cardiac Centre, that I began to understand the impact heart failure would continue to have on my life.

Within the first year back in Toronto,  I noticed I was a little shorter of breath than usual.  As the year progressed, I began having more and more difficulty climbing the stairs—something I blamed on a case of Achilles tendonitis.  The tendonitis is long gone, but stairs have now become even more of a challenge.  When we relocated to our current building, one with elevators, then I noticed that walking uphill on  Yonge Street was becoming more difficult than it once was, gradually, forcing me to pause multiple times to regain my breath when I ran errands on foot.  While my husband and still I walk together from time to time, it’s me who asks, “Can we go a bit slower please?” unlike a few years ago, when he would complain about my brisk pace.   

The deceptive thing about heart failure is that I don’t look different.  Oh sure,  I’m older, like all my friends, and one’s body shows those signs in little, but persistent ways:   graying hair, more lines in the face, declining muscle tone, stiffening joints–the complaints common to advancing years.  But I look normal. My ICD is beneath skin and clothing:  there are no visible markers as there often  are with cancer patients that tell people “She’s a heart failure patient.”   And unlike in cancer, there is no “hope for a cure” among heart failure patients, just the increasing number of medications, to “help you last a bit longer.”  Don’t get me wrong:  I am very grateful for those medications and for the exceptional medical care I get at Peter Munk, but I am much more aware of living with heart failure —and the insidious way in which doing so  sneaks up on me, sometimes triggering the blues.

The impact of living with heart failure is to challenge the very me I always believed I was.  My body’s betrayal has forced me to re-evaluate the image I have always had of myself—that active, healthy, fast-moving, multi-tasking self.  Mortality then seemed a long way off.  Now I realize that my heart might be concocting other ideas about my longevity.   Yet admitting all this is something I rarely do, and when  I opened up about it to the TRCHR team members in our meeting, I was embarrassed and surprised to find tears streaming down my face.  Obviously, I’d hit on a topic I felt strongly about—more than I was previously willing to admit. …Looks like I’ve got some writing to do.

This long struggle to be a home

In the body, this difficult friendship.

From “Cages,” in Collected Poems, 2005, by Jane Kenyon

Writing Suggestions:

  • Has a debilitating illness or progressive medical condition changed your life?  In what ways?  Write about its challenges to your self-image and how you manage those.
  • How has your relationship with your body changed due to a serious illness?
  • How has your relationship with your body been affected by physical aging?
  • Use the lines from Jane Kenyon’s poem, quoted in this post, as a place to begin writing.

November 8, 2021: Using Metaphors in the Medical Experience

Poetry and medicine share a long history, something for which we can thank Apollo, the Greek god responsible for both healing and poetry.  If you had any idea that metaphors are only the creativity of poets and poetic imagination, think again.  Metaphors are common and pervasive in our everyday lives, influencing the way we think and act.  Metaphors, which compare two seemingly unrelated things, are not only common in poetry and everyday life, but also in medicine.  (Lakoff & Johnson, Metaphors We Live By, 1980).

Consider the sports talk that dominates the televised football or hockey seasons.  Sports metaphors are commonly used to describe experiences in our daily lives, for example, in companies, where employees are encouraged to be team players” or “run with a good idea.”  When I was young, high school football games were not only popular, but the language of the game made its way into aspects of our teen-age dating lives, as when someone might “made a pass at you,” or behaved in a way that were “way out of bounds.”

Why do we use them?  Metaphors are visual and illustrative, but they sometimes run the risk of creating stereotypes, confusion, or becoming clichés.   Some, like sports and military metaphors are so common in our daily language, they are frequently used to describe the medical experience.  Common examples include parental metaphors, “she’s too sick to know the difference,” engineering metaphors, “coming in for a tune up”, or the commonly used military metaphor of cancer as a “battle” to be fought and won.  Nevertheless, metaphors are essential in our ability to describe and convey the experience of illness—and not just for the patient, but for the physician as well.

Dhruv Khullar, MD, in a 2014 article, “The Trouble with Medicines’ Metaphors, “published in The Atlantic, stated:   

The words we choose to describe illness are powerful. They carry weight and valence, creating the milieu in which goals of care are discussed and treatment plans designed. In medicine, the use of metaphor is pervasive. Antibiotics clog up bacterial machinery by disrupting the supply chain. Diabetes coats red blood cells with sugar until they’re little glazed donuts. Life with chronic disease is a marathon, not a sprint, with bumps on the road and frequent detours...  Military metaphors are among the oldest in medicine and they remain among the most common. Long before Louis Pasteur deployed imagery of invaders to explain germ theory in the 1860s, John Donne ruminated on the “miserable condition of man,” describing illness as a “siege…a rebellious heat, [that] will blow up the heart, like a Myne” and a “Canon [that] batters all, overthrowes all, demolishes all…destroyes us in an instant.”

As Khullar points out, “…we’ve internalized these metaphors, so much so that we often may not recognize how they influence us.”  Nevertheless, they are important and necessary to help convey what is difficult, at first, to describe, offering a shorthand way of making sense and communicating the experience of serious illness.   Just as we use metaphors to communicate to our friends and others, physicians use them to help patients understand the ramifications of their illnesses.  Interestingly, Khullar cited a 2010 study finding that physicians use metaphors in nearly two-thirds of their conversations with patients diagnosed with serious illness.  In fact, the doctors who used more metaphors in explaining medical conditions were seen as better communicators. Why?  Because “patients reported less trouble understanding them, and felt as though their doctor made sure they understood their conditions.”

 Metaphors get our attention.  They offer us a vivid way to communicate in an understandable way our experience of serious and life-threatening illnesses, whether patient, physician or care-giver.  If you explore any poetry of the medical experience, you’ll discover it is rich with imagery and metaphors that resonate with your own experience. For example, I have often used Mary Oliver’s poem, “The Fourth Sign of the Zodiac,” with its extended metaphor to encourage writing group members to explore their metaphors used describe the experience of diagnoses and treatments.

Why should I have been surprised?
Hunters walk the forest
without a sound.
The hunter, strapped to his rifle,
the fox on his feet of silk,
the serpent on his empire of muscles—
all move in a stillness,
hungry, careful, intent.
Just as the cancer
entered the forest of my body,
without a sound…

(In: Blue Horses, 2014)

Donald Hall, in his poem, “The Ship Pounding,” creates a powerful, visual metaphor of a great ship to describe the hospital and his experience of the final days spent with his dying wife, the former poet, Jane Kenyon.  He first describes going to the hospital to visit his wife:

Each morning I made my way   

among gangways, elevators,   

and nurses’ pods to Jane’s room   

to interrogate the grave helpers   

who tended her through the night   

while the ship’s massive engines   

kept its propellers turning…

—–

At first the tenor of the poem feels almost hopeful:

—–

The passengers on this voyage   

wore masks or cannulae

or dangled devices that dripped   

chemicals into their wrists.   

I believed that the ship

traveled to a harbor

of breakfast, work, and love…   

When the infusions

are infused entirely, bone

marrow restored and lymphoblasts

remitted, I will take my wife,

bald as Michael Jordan,

back to our dog and day.

But Kenyon’s illness is terminal, evident in the final lines, and as her disease progresses, his trips to the hospital become anxious, as he and his dying wife return to the hospital:

I listened in case Jane called

for help, or spoke in delirium,

ready to make the agitated

drive to Emergency again

for readmission to the huge

vessel that heaves water month   

after month, without leaving   

port, without moving a knot,   

without arrival or destination,   

its great engines pounding.

(In: Without, 1998))

“The Ship Pounding” is a moving and visceral image offered by Hall, one that makes experience of the narrator and his dying wife readily understood.

I often return to the wonderful book by former literary critic, Anatole Broyard, who died in 1990 from prostate cancer.  Entitled, Intoxicated by My Illness and Other Writings on Life and Death (1993) Broyard also explored the use of metaphor to think about and describe his illness:

Always in emergencies we invent narratives. . . Metaphor was one of my symptoms.  I saw my illness as a visit to a disturbed country. . . I imagined it as a love affair with a demented woman who demanded things I had never done before. . .   When the cancer threatened my sexuality, my mind became immediately erect. 

Medicine continues to advance and offer us much more precise understanding of medical conditions and diseases, yet “metaphor,” as some authors have stated, “remains essential” as a way to convey the experience of illness.  As Broyard remarked, “Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers.”

Writing Suggestions:

What metaphors have you used to describe your illness?  How did they change as your condition changed?

  • Think about the ways in which you have used metaphors with family, friends or your doctors, to describe your experience of serious or debilitating illness.  How have they helped you understand and communicate?
  • Explore the different metaphors that describe your illness or condition.  Begin with a phrase, for example such as “Cancer is a…” or “Living with heart failure is like a…,”or “A heart attack is like…”  and finish the thought, noting what image or word emerges.  Remember, write quickly, without editing. Set the timer for five or ten minutes and keep your pen (or fingers) moving. Generate as many comparisons or metaphors as you can.  Once you’ve finished, read over what you’ve written.   What surprises you?  Do you discover any unexpected insights to your feelings?  How do your metaphors you navigate and explain your illness to others? 
  • Try writing a poem or narrative using the metaphors to describe your experience of illness or disease.
  • “Physicians who used more metaphors were seen as better communicators.”  True or False for you?  Has your physician used metaphors in communicating aspects of your diagnosis?  If so, do any stand out?  Were the metaphors useful in helping you understand your illness?

October 24, 2021: Writing From the Fault Lines

“You must learn to live on fault lines.”
― Suleika Jaouad,Between Two Kingdoms: A Memoir of a Life Interrupted, 2021

My childhood and teenage years were spent growing up in Northern California, a life that included annual water rationing during summertime, seasonal forest fires and the expectation that periodically, the earth could move beneath our feet, something which had little to do with a sudden jolt of teenaged romance.  The occasional movements of the earth were due to the sliding boundaries, the fault lines that define the earth’s tectonic plates. California has many of these fault lines, and sometimes, as witnessed in the Loma Prieta quake of 1989, significant upheaval and damage–even loss of life—occur.

Living on the fault lines is not something Californians have to learn; it’s what they do.  But the periodic upheaval created by the “fault lines” is an apt metaphor for what happens in our emotional lives when unexpected trauma or life-threatening illnesses occur.  In those periods of stress and anxiety, old emotional wounds can also make their way to the surface, adding to the emotional challenges facing you in the midst of a new life crisis.   

In 2007, I began teaching creative nonfiction writing for the UCLA extension Writers’ Program.   My first course was one of several other offerings, and I titled my course “Writing from the Fault Lines:  Writing to Heal,” a title that lasted for three years, until expressive writing gained a foothold in public popularity. To distinguish it from the many and varied writing workshops that seem to blossom everywhere, the course was re-named “Transformative Writing.”

Now many years later, I live far from California, having returned to Toronto in 2017. I no longer teach for the UCLA program, but I continue to lead expressive writing groups for cancer and heart patients.  This past weekend, while working with an inspiring group of young adult cancer survivors, the Young Adult Cancer Canada “YACCtivists,” I re-read portions of Suleika Jaoaud’s extraordinary and thoughtful cancer memoir, Between Two Kingdoms:  Life Interrupted. I paused when I read her sentence, “You must learn to live on fault lines.” The young adult survivors representing YACC had definitely learned that lesson—and then some. 

I thought back to the time the word “cancerous” was spoken to me in a physician’s office in California.  My husband and had returned to California after nearly 26 years in Canada, only to run headlong into a family crisis full of resentment, accusations and the losses of my parents:  my father had died of lung cancer and my mother was lost to Alzheimer’s disease.   At the same time, I was overseeing a difficult and emotional downsizing of a nonprofit organization while trying to navigate the unexpected familial acrimony.  Writing was my refuge.   I filled page after page in my notebook with disbelief, questions that couldn’t be answered and even some misplaced sense that I must have brought on the cancer myself.  Yet my initial outpouring soon gave way to the deeper wounds, to losses and hurt I’d amassed in trying—and failing—to deal with the estrangement from my two siblings.  My “real” story was not about cancer; it was what lay beneath the surface, pressures within my emotional interior begging to be released.

I have often witnessed similar struggles for some individuals in my writing groups.  The experience of a life threatening illness can unearth other, unresolved, feelings.  Painful memories or traumatic events of the past can be triggered by the most benign of writing prompts, and as they rise to the surface, they too are expressed in what gets written.  Writing our healing stories often goes well beyond the experience of serious illness as some plumb the depths of their lives, bringing into the open what they were not able to do before.  

Did you ever think there might be 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 are 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.  

Emotions can inspire us or hold us hostage.  Negative emotions—anger, fear or feelings of unworthiness—accumulate, just as stresses along the earth’s plates.  They weaken our ability to fend off illness, depression or disease.  Writing allows us, if we let it, to translate those negative emotions into words, make the connections between what we feel and why, and begin to understand or even forgive ourselves and others.  It is in the act of writing and sharing our stories that we release the pressure of old wounds, that we begin to heal.

Writing Suggestion:   This week, write from your own fault lines.  Go deeper in your writing. Explore those sometimes difficult and painful life experiences that still linger beneath the surface.  

August 31, 2021: I Guess That’s Why I Called It the Greys

Everywhere in North America, children are heading back to school…only it’s not with quite the same unabated enthusiasm for many youngsters and their parents.  COVID, despite the many months of lockdowns, social isolation and available vaccinations, hasn’t finished with us, as the Delta variant and climbing case numbers demonstrate.   Since my three grandchildren are beginning another school year, I can’t help but wonder about the spread of the virus among schoolchildren who have not, as yet, been eligible for vaccinations. 

That low level anxiety lingers–all too frequent a visitor in my life during the past year and a half. While my husband and I enjoyed some of the gradual opening up of restaurants, galleries, and stores during the summer months, we also remained cautious.  Then the dog days of August descended with haze, heat and oppressive humidity. That, coupled with the daily reports of drought and wild fires around the world, put the reality of advancing climate change into sharper focus, and coupled with the rise in COVID cases, my anxiety rose.  The blistering heat forced me back indoors, which was all too reminiscent of the months of lockdown.  Days dragged, headlines screamed disaster, and my spirits took a nose dive.

Mornings, which are my quiet time for writing, offered little relief.  For many days, my notebook pages contained more white space than words.  I couldn’t seem to get inspired, unable write through my monumental case of sagging spirits.  The days seemed cast in muted, colorless tones. And worse, when I looked at myself in the mirror, my image reflected back seemed dull and grey, just like my mood. I remarked to a friend, “In these times, grey has become a primary color.”

That one spontaneous sentence, and the next day, my associations with “grey” came out of hiding.  I recalled Mordecai Richler’s wonderful children’s book, Jacob Two-Two Meets the Hooded Fang, published in 1975, read and re-read to my young daughters.   Jacob, is a  young boy in a large family who has to repeat everything twice just to be heard, which results in his nickname, Jacob Two-Two. His habit is also the reason he is misunderstood and considered rude. All of it results in his being punished and sent to the children’s prison,  “Slimer’s Isle,” which is run by the Hooded Fang.  Slimer’s Isle is a place where captive children like Jacob never see the sun.  The image of that sun-less place seemed a perfect description for the grey mood that had lingered in my psyche for months. 

Yet Remembering Jacob Two-Two and Slimer’s Isle was also an inspirational nudge.  It was enough to inspire me to a fruitful morning writing, and this time, the words came.  I had fun tinkering with the song lyrics of  “I guess that’s why they call it the blues,” substituting the color grey and adding a few lines about COVID in my version. While it’s hardy ready for public consumption, my husband and I had a laugh over my attempt at song lyrics.   A day or two later, time spent with my granddaughter led me to the old memory of the Crayola Box of 64 colors—an item which accompanied every “back to school” bag during my childhood.   Grey was my most unused color in the box, but thinking of it transported me to the memory of  a delightful poem about color written by a medical student in a writing workshop I led for faculty and students of Stanford Medical School in 2015.

I used color as a writing prompt.  To get people inspired, I spread out a handful of paint color chips on a table.  Not only are a full range of colors represented in the interior paint chips , but they have somewhat exotic—one might even say “silly”—names, such as “first light,” “little princess,” “dinner party,” “head over heels,” “windmill wings”…  Whether using the color or the names associated with them, participants had great fun working them into poems and stories.  But one med school writer’s poem stood out above all the others.  She had chosen the least popular color of the lot:  grey, labeled “hickory smoke.”  When she volunteered to read aloud, we were in awe of how she’d brought that mundane color to life.   Here is an excerpt of her poem, simply titled “Grey”:

…“Air with dirt,” they say.

Floating soot clamoring cold and unwanted

against a clean white wall…

…Grey is the color of “yes, life has been here,”

and “don’t you know I have a story to tell?”

Grey is the sidewalk that’s been walked,

the white house that’s been lived in…

White is before, but give me the after

Give me the ninety-year-old under her old grey comforter.

Has she lived? Well, tell me the color of her soul.

Show me the spots of grey, and tell me how you’ve lived,

the story printed dark and true in the deepest, most imperfect,

ugliest and sweetest shade.

–Workshop Participant, 2015

It’s probably no surprise that after re-reading her poem again, my grey mood had begun to dissipate.  Since then, I’ve pulled my ancient and well-worn copy of Jacob Two-Two from the shelf to recall his experiences on Slimer’s Isle, how he won over the Hooded Fang and returned to his family a hero.  I suppose that all the little memories of grey served as a reminder that while life has been difficult, and despite Zoom, lonely at times, it’s within my control to find ways to navigate this rather strange “new normal”  with a more positive outlook.  Even in the greyest of times, it seems we can find new insights, ideas, perspectives.  School is starting for my grandchildren, my teaching daughters, and even for me, beginning new series of writing workshops for cancer and heart patients.  This is activity I truly look forward to, and I am particularly grateful that despite these months of lockdown and isolation, I can be engaged in meaningful ways.  While my mirror doesn’t lie—I am getting grayer–but that would have happened even without COVID! So grey hair or not, I’m engaged in ways that matter to me.  And that’s  how I want to live.

 “Show me the spots of grey, and tell me how you’ve lived…”

WRITING SUGGESTIONS

.  How have you navigated the long months of COVID isolation?  What kept you going?

.  Did you experience “the greys?”  or “the blues?”  What helped you through those less positive moods?

.  Pull up a color wheel on the web—or open a box of 64 colored crayons.  Choose a color, any color. Make a list of what comes to mind for just 3 minutes.  Read it over, then choose one thing from your list and write for 15 minutes.  Try playing with a narrative or a poem that uses that color in it.

.  Did COVID help you gain clarity about what matters most in your life?  Write about the lessons from lockdown.

.  Back to school.  What memories do you have from your childhood about a new school year beginning?

August 3, 2020: COVID: A Time for Reflection

(Illustration by Maurice Sendak, From:  Open House for Butterflies by Ruth Krause)

Starting here, what do you want to remember?
How sunlight creeps along a shining floor?
What scent of old wood hovers, what softened
sound from outside fills the air?…

For the month of July, I took a month-long hiatus from writing my blogs–something I haven’t done in the 14 years since I first began my “Writing Through Cancer” blog.  But in this unusual time created by COVID, I felt the need to break from my self-imposed schedule of posting and instead, have the freedom to let my mind—and my pen—wander where they would.  It was a necessary period to simply reflect and be, in the sense of writing, quiet for a time.

I kept my daily writing routine—a habit indispensable to my day.  Some days my notebook pages were half empty, as though my muse had gone into hiding; on other days inspiration would strike, playful, serious, or lead me into a re-examination of past writing—it hardly mattered.  I simply let whatever emerged on the page, be.  I began re-reading pages and pages of old posts, books of poetry, and others about writers and writing.  I questioned whether to continue my blogs or to let them gradually fade away from inactivity. I questioned the writing of separate posts for cancer and heart failure as I’d initially done.  The two had already begun to converge in recent weeks, and not surprisingly.  Writing about serious illness, trauma or suffering is less about the illness itself and more about the human experience.  It is writing about life.

The upending of what was normal, months of social isolation, social distancing, closures, and virtual everything has been sobering.  During the early months of COVID, I had celebrated another birthday, less welcomed this year as my birthdays before COVID and when I was much younger.  My past birthdays signaled a new year, one that held promise, opportunity, new plans and dreams, while this most recent one was punctuated with questions:  How long will this continue?  Will my life be shortened by this virus?  What will the coming year hold for all of us?

Of course, there were always some years I was happy to bid farewell–ones marked by personal tragedy, loss and illness–but even then, the passing of another year signaled the possibility for something better.  Looking back, I realize that my “crosshairs” were firmly set on what Wallace Stegner once described as “the snow peaks of a vision” in his Pulitzer Prize novel, Angle of Repose, (1971).   I was always looking ahead to the “what’s next? “What’s possible?”   Before COVID, I still had that “looking ahead,” the hope, possibilities of something “new” to look forward to, a new goal to achieve, a trip to another country, some “better thoughts” that might turn into something significant on the page.   COVID, like cancer and heart failure temporarily did, foisted a “hold” on those future possibilities, and the longer our lockdowns and restrictions have continued, the more I realize we—all of us– are unlikely to return to the same world we knew—and took for granted—just six months ago.  What, then, I wondered, do we look forward to now?

Will you ever bring a better gift for the world
than the breathing respect that you carry
wherever you go right now? Are you waiting
for time to show you some better thoughts?

The little respite from the blogs that  I granted myself has helped me realize that this strange and unusual time has given me a chance to look back, reflect and have gratitude for the life I’ve been fortunate enough to live thus far, even if I sometimes regret I haven’t accomplished all I set out to do.  It’s also helped me clarify what matters most to me and how and where I want to expend my energies as life moves forward.

I am more aware than ever of the fragility and uncertainty of life.  I take nothing for granted.  My brushes with cancer and heart failure, the experiences of the men and women who write with me from the experience of life-threatening and terminal illness continue to remind me how precious life is and yet more, how challenging and difficult it can also be at times.  None of us is immune from illness or hardship. No one escapes.  Cancer, heart failure, a pandemic of COVID:  serious illnesses remove any pretense or assumptions about ourselves we may have—a time, perhaps, when we need to pause and reflect, gain insight and discover so much more of who we are and have the potential to be.   Maybe that’s one important lesson I will take from this time of pandemic—and use it to continue to inform how I want to live and engage with others.

When you turn around, starting here, lift this
new glimpse that you found; carry into evening
all that you want from this day. This interval you spent
reading or hearing this, keep it for life –

From: “You Reading This, Be Ready,” by William Stafford)

Writing Suggestions

  • What has been your COVID experience? Write about the concerns, reflections or insights about life as you’ve known it—and how it may change.
  • Do you agree or disagree: “Writing about serious illness is really writing about life.” Why or why not?
  • What new glimpse of life and living have you discovered out of hardship or serious illness?
  • Begin with the line, “Starting here, what do I want to remember?” and keep writing for ten minutes.  Re-read.  What stands out?

 

 

A Brief Hiatus

Dear Readers of “Writing Through Cancer,”

As you might have guessed from my last post, I’m in need of a little respite to refuel and re-energize.  I’ll be offline until August, but please do use the archives during this time…there’s well over a year’s worth of bi-weekly posts and prompts to help ignite your writing.

Stay well and stay safe…a friend of mine wrote about being a “good masketeer,” and for a good time yet, I’ll be wearing my mask anytime I’m out and about in Toronto.

Warm wishes,

Sharon Bray