Category: heart disease

What Illness Teaches Us About Life

Published on by Sharon A. Bray, EdD4 Comments

“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?

November 8, 2021: Using Metaphors in the Medical Experience

Published on by Sharon A. Bray, EdD

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

Published on by Sharon A. Bray, EdD2 Comments

“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.