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September 5, 2022: Hiatus? What Hiatus?

Published on by Sharon A. Bray, EdD5 Comments

In my most recent post of June 5th, I wrote about my intentions to take a time of respite and renewal, including a break from my workshops and this blog.  If you’ve remembered times of making  good intentions in your lives, you know that more often than not,  we fail to realize them.  I am no exception.

 As I began my “vacation” from my regular activities, I envisioned writing the family stories I’ve wanted to capture so long.  I imagined long relaxing walks with my dog in Toronto’s parks and nearby trails.  I wanted that relaxed time to nourish my spirit, body and creative energy.  It’s three months later, and few, if any, of those intentions were realized.  Yet now,  September has begun, students are heading back to classes, and  for those of us whose lives have long  been tied to the rhythm of an academic year, I feel a persistent drive “to get back to work again.”  That has begun here, with this first blog after my summer hiatus.  And just as in my youth,  when first day of grade school typically  involved a written assignment, often entitled, “How I Spent My Summer,”  my current post is my adult version of that grade school assignment.

I still remember the excitement of that first day in a new grade, my new pencil poised  over a fresh sheet of blue-lined paper, and in my very best handwriting, recounting the highlights of my summer vacation.   Summertime meant long afternoons at the community swimming pool, camping trips and waterskiing at Northern California lakes, fishing with my father in nearby rivers, the imaginative expeditions with other neighborhood children, moving carefully through barbed wire fences to explore and create adventures among pine trees, hills, manzanita “fortresses,” the “rockpiles,” and taking along coffee tins for  blackberry picking, our lips turning purple with the juices. 

In the long summer evenings, we gathered again to play softball or touch football in the street, turn cartwheels on our lawns, have sleepovers under the stars in our backyards, or create mini-fairs or plays to entertain our parents.  Sometimes, we piled into our family  station wagon as my father drove the 650 miles to Southern California to visit our relatives.  I had no shortage of experiences to write about in that first back-to-school assignment.  My summers were filled with  imaginative play,  adventures and fun.

Yet this summer has been a far cry from the fun of my childhood or my well intended plans for a time of renewal.  As I reflect on the summer I experienced vs. the one I intended, the memories are not of a period of respite or renewal, but rather a roller coaster ride of emotion: worry, hope, disappointment, renewed hope and near the end, gratitude, all defining my days and nights from June to the middle of August.

It began in late spring with follow-up medical appointments after some worrisome heart episodes in late spring.  When I met with my cardiologist and learned that my mitral valve was “leaking,” regurgitating about 50%  of the oxygenated blood from the upper chamber, which explained why I was increasingly fatigued and winded whenever I walked up hill or at too brisk a pace.   An additional medication was added to my daily regiment to better regulate my heart beat, a transesophageal cardiogram scheduled and I was referred to a team of cardiologists to evaluate my suitability for a mitral valve clip.   The month of June dragged on as I waited  for the decision:  would I qualify for the procedure or not? Waiting, as so many of you already know,  is a large part of the medical experience that accompanies illness and disease, expressed so clearly in Robert Carroll’s poem, “What Waiting Is.”  Here’s an excerpt:

You know what waiting is.
If you know anything, you know what waiting is.
It’s not about you.
    This is about
illness and hospitals and life and death…

       (In:  What Waiting Is, 1998)

June was consumed by waiting.  As the weeks dragged on without any decision from the doctors, my emotional life was defined by increased anxiety and worry that I might not be accepted for the procedure.  Hopefulness turned to doubt, and four weeks later, when the head of the medical team informed me I had been rejected as a viable candidate for the procedure given the damage done to my heart, my spirits plunged.   But my cardiologist called shortly afterward to see how I was feeling and offered another possibility for hope.  I’m lucky that she is a doctor who “fights” for the best interests of her patients and is not one to take “no” for an answer until every option has been explored.  She had immediately referred my results to a cardiologist practicing at a different hospital than she does, someone described as “doing some magic” with mitral clips for difficult cases. “Magic” was sounding pretty darn good to me.  In less than two weeks after initially being turned down at my regular cardiac clinic, I was admitted for a mitral valve procedure with the “magician” cardiologist.   A day later, I returned home for a brief recovery period, two mitral valve clips successfully installed and functioning well.

Although I never imagined my summer would be consumed by my physical health, I have emerged from it with a sense of renewal:  more physical energy and stamina, the pleasure of walking without stopping to catch my breath every block or two, and an enduring sense of gratitude for the determination, support and skill of my doctors and the compassionate nurses who card for me pre-and post-procedure.    I am also deeply grateful for the support of my family and friends scattered around Canada, the US and Japan.   The wisdom of my 13 year old my grandson summed it all up: “Keep your spirits up,” he wrote, “remember that more people are there for you than you think.” 

He was right.  I am one lucky woman.  Summer intentions aside, the experience of these past weeks has been an extraordinary gift.   That’s life, I guess, and I am very grateful for the one I have.

“Starfish” by Ellen Lerman

This is what life does. It lets you walk up to

the store to buy breakfast and the paper, on a

stiff knee. It lets you choose the way you have

your eggs, your coffee…Then it sits a fisherman

down beside you at the counter who says, “Last night

the channel was full of starfish.” And you wonder

is this a message, finally, or just another day?

***

Life lets you take the dog for a walk down to the

pond, where whole generations of biological

processes are boiling beneath the mud. Reeds

speak to you of the natural world: they whisper,

they sing. And herons pass by. Are you old

enough to appreciate the moment? Too old?

***

…Later, you wake up beside your old love, the one

who never had any conditions, the one who waited

you out. This is life’s way of letting you know that

you are lucky…

***

So life lets you have a sandwich, and pie for your

late night dessert. (Pie for the dog as well.) And

then life sends you back to bed, to dreamland,

while outside, the starfish drift through the channel,

with smiles on their starry faces as they head

out to deep water, to the far and boundless sea.

(From: Our Post-Soviet History Unfolds, 2005)

Writing Suggestions

  • Write about a time when your good intentions went awry. What were the intentions? What got in the way of your acting on them? What happened? What, if anything, did you learn from the experience.
  • Go back in memory to your youth. Think of the summer, once school was out, and the opportunities for fun, play and new adventures was yours. Write about one summer (or more) that stands out most in your memory. Why?
  • Life doesn’t always go as we’d planned, and yet, we can discover new ways of being, new opportunities, even gratitude despite life not behaving as we intended for ourselves. Has that happened to you? Write about such a time, the new insights or gifts you discovered when your life took a different turn.

Happy Writing,

Sharon

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June 5, 2022: A Time Out for Renewal

Published on by Sharon A. Bray, EdD12 Comments

The image and wisdom portrayed in this illustration by Maurice Sendak in Ruth Krause’s children’s book, Open House for Butterflies (1960) is one of my enduring favorites, and now, as our Canadian summer has finally begun and a busy season of writing workshops draws to a close, I am craving a period for renewal and solitude.  I am utterly Zoom weary, and I find I am spending the better part of my morning writing practice staring out of the window, a drift of random thoughts in my mind.  Yes, it’s time for a pause, taking long walks near streams, Lake Ontario, and the ravines and trails that populate our city and province. I crave the space and time without any deadlines or Zoom meetings filling my days.

In the two years that Covid has dominated our lives, the many weeks of encouraging and hearing the experiences and stories of those who live with cancer, organ transplant or cardiac conditions, the fragility and uncertainty of life reminds me to take nothing for granted.  In past weeks, I’ve also been reminded that my heart failure continues to progress, and I am now waiting on test results to determine for a mitral valve clip is an option for the next steps in my treatment.  The round of medical tests has also been a factor in my craving for solitude and renewal, to “be quiet near a little stream and listen.”

British psychiatrist, Anthony Storr, in his 1988 book, Solitude:  A Return to the Self, wrote that the capacity to be alone is important for our brains to function at their best.   “Learning, thinking, innovation, and maintaining contact with one’s own inner world are all facilitated by solitude,” he stated.

Having the capacity for what psychoanalyst Adam Phillips called “fertile solitude” is essential for not only creativity, but our happiness.  Without time and space unburdened from external input and social strain, we are less able to “fully inhabit” our interior lives, which are the raw material of all art. (https://www.themarginalian.org/2014/07/18/adam-phillips-on-risk-and-solitude/)

My final expressive writing workshop series for this season ends in a week and a half.  I will be taking the summer for a break from Zoom and deadlines, instead, using the time to be quiet and engage with my own wandering thoughts.  I have long been someone who cherishes time for quiet reflection to renew my spirit and creativity.  Renewal–a time of quiet and solitude–without the need to produce something–is the fertile ground for the new ideas and re-energizing that inspires the work I do with others.  It is precious time to simply enjoy life without schedules and external demands on my time.-something recognized valuable not only by psychologists, but writers and poets too.

“When from our better selves we have too long
been parted by the hurrying world and droop,
sick of its business, of its pleasures tires,
how gracious, how benign, is Solitude.
–W. Wordsworth

Finally, I am taking a break from bi-weekly posts on my blog.  During the next several weeks, please feel free to access the archive for past posts and writing suggestions.  Meanwhile, my thanks to you for following and reading my blog. Hopefully, you find some inspiration of your own from the musings I write. I’ll be back online as summer begins to fade.

Wishing you a pleasant summer, a time to enjoy nature, nourish and renew your spirits.

Sharon

Anniversaries: Markers of Life Lived

Published on by Sharon A. Bray, EdD5 Comments

He remembers the day with roses,

one for each healthy year, five pink buds,

not red.  Red reminds too much

of blood, the counting of cells…

But she is here, to take in his arms tonight

And tell her she is still beautiful…

(From: “Five Year Anniversary,” by Kymberly Stark Williams, In:  The Cancer Poetry Project, 2001, Karin Miller, ed.)

This past week, my husband and I drove to Niagara-on-the Lake for quiet celebration of our 33rd wedding anniversary.  It was a lovely two days, and like any anniversary, inevitably led to reminiscences:  who we were then, significant events along the way, and appreciations of our continuing life together. 

Yet there are other anniversary dates that linger in our memories.  Every July, I, along with my daughters, pause to remember when their father, my first husband, died tragically in a drowning accident.  The memories of that day remain vivid, along with the many, many months of grieving and upheaval.  Now, as I remember him on that day, there is a softer nostalgia coupled with the wish that he could witness what extraordinary women our daughters have become.

Another anniversary occurred twenty-two years ago, just the day before my 11th wedding anniversary. I sat in a physician’s office and heard the word, “cancer,” for the first time.  I was numbed by shock and disbelief. Now, I rarely remember that time, overshadowed by the ways in which my life changed for the better in the years that followed.  With the support of my husband and his encouragement, I embarked on a new and different direction and began my first writing workshops for cancer patients, something for which I continue and for which I am deeply grateful. 

The workshops I also now facilitate for cardiac patients also emerged out of my “lived experience,” diagnosed with heart failure just weeks before my first grandchild, was due.  I burst into tears when the cardiologist delivered my diagnosis. “I can’t die yet! My first grandchild is about to be born!” He quietly reassured me: “You aren’t going to die, not yet anyway.”  Less than a month later, my grandson was born, and I was on hand to hold him in my arms.  That was over thirteen years ago, but I still remember the joy of his birth, and I remain grateful that I have been able to witness not only his growth year after year, but those of my two younger granddaughters.

Whether birthdates, weddings or loss of loved ones, serious illnesses, a nation’s tragedy–memories and poignancy are part of anniversary dates . We remember where we were, what we were doing, and even old emotions may rise to the surface.  In the first years following loss, tragedy or trauma, anniversary dates can still ignite strong emotions–grief, old fears, relief, or happiness.  Rituals or celebrations marking those anniversaries are one way to remember losses or mark a significant event in our lives, but they also offer a chance to reflect on our lives and move on.

Our anniversaries are an important part of life. Celebrations and rituals can be an important and meaningful way to assist in healing, a way to acknowledge your experience and place it into the context of your whole life.  In the weeks before his death from lung cancer on Thanksgiving Day, 1992, my father asked us to not linger in sorrow, but instead, invite extended family and friends to share their humorous stories of his life over a glass of Jack Daniels whiskey.  We still mark the anniversary of his passing each November with a toast to my father, a ritual preserving the man we knew in life—not death—and as someone who always appreciated a good tale and laughter.

Certain milestones may recede in importance as life goes on.  The pain of loss diminishes.  New joys and hopes are discovered; new chapters of life created.  I often share the words of novelist Alice Hoffman with my cancer writing groups.  Recalling her cancer experience in a 2001 New York Times article, Hoffman wrote, “An insightful, experienced oncologist told me that cancer need not be a person’s whole book, only a chapter.” 

There are many ways to celebrate or honor important milestones in the in our lives.  Here are a few suggestions from a 2016 Cancer Net article by Greg Guthrie. While Guthrie was writing for cancer survivors, his suggestions are applicable to milestones and anniversary dates of many significant life events we all share.

While we all can experience many of the painful or difficult periods in our lives, we have less need to mark or dwell on the dates of suffering as we heal. We immerse ourselves in the work of living and gradually, move on. It doesn’t mean we forget, but rather, we learn to celebrate rather than mourn.  We give thanks.  We honor. 

Marking an Anniversary

Take time to reflect. Plan a quiet time to think about your cancer experience and reflect on the changes in your life.  Writing in a journal, taking a long walk through the redwoods, along the ocean, or anywhere you enjoy being, offers the quiet time for reflection.

Plan a special event.  One woman from an earlier cancer writing group celebrated with a trip to Costa Rica after completing treatment for a recurrence.   Why not plan something special, like a hot air balloon ride a trip somewhere you’ve always wanted to take, or a celebratory gathering with family and friends.

Donate or volunteer. When I first joined the ranks of “cancer survivor,” it was a turning point.  I returned to writing and shortly, initiated the first of my expressive writing groups for individuals living with cancer.  That initial series has grown and expanded to include cardiac and transplant patients, as well as others.  I never saw the workshops as an “occupation,” but rather a “vocation”, meaning taken from the Latin “vocare,” work of the heart.

Join an established celebration. Many of us have walked, run, or participated in support of one of the annual walks hosted by patient advocacy groups or national organizations.

Celebrate your way.  Celebrating milestones doesn’t have to involve elaborate or expensive activities.  Simply do something you truly enjoy.  Take a walk along the seashore or through a public garden, go to a film or the theater with a friend, place flowers on a loved one’s gravesite, or, share time with family or friends, those who supported you during the roller coaster of treatment and recovery.  The difficult periods in our lives or “anniversaries” significant loss and serious illness, is not as Alice Hoffman reminded us, our whole book, just a chapter.  Celebrate your life.

The time will come 
when, with elation 
you will greet yourself arriving 
at your own door, in your own mirror 
and each will smile at the other’s welcome, 

and say, sit here. Eat. 
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart 
to itself, to the stranger who has loved you 

all your life, whom you ignored 
for another, who knows you by heart. 
Take down the love letters from the bookshelf, 

the photographs, the desperate notes, 
peel your own image from the mirror. 
Sit. Feast on your life. 

(“Love after Love,” by Derek Walcott, in Sea Grapes, Noonday Press, 1976)

Writing Suggestions:

  • What anniversary dates are important to you?  Why?
  • Which do you remember most vividly? What images or feelings do those dates evoke?
  • Write the story behind an anniversary date.  What happened?  Why was it important to you? How did your life change because of it? 
  • How do you honor your anniversaries of those challenging life events? 

May 1, 2022: The Rx of Friendship

Published on by Sharon A. Bray, EdD6 Comments

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

Published on by Sharon A. Bray, EdD4 Comments

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

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?

March 13, 2022: Communicating the Illness Experience Through Metaphor

Published on by Sharon A. Bray, EdD

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.

February 27, 2022: Music Matters: An Rx For Troubled Times

Published on by Sharon A. Bray, EdD1 Comment

“Music does a lot of things for a lot of people. It’s transporting… It can take you right back, years back, to the very moment certain things happened in your life. It’s uplifting, it’s encouraging, it’s strengthening.” — Aretha Franklin


I’ve mulled over a blog post for days, uninspired and struggling with the blank page staring back at me each morning.  I’ve blamed it on the lingering malaise from a prolonged pandemic, the political and economic unrest, news headlines I try to avoid, and a lack of inspiration.  Yesterday I realized the solution to my struggle had been close at hand all the time: my long-standing morning diet of classical music, playing softly as I write.  It’s been a lifetime source of comfort, contemplation, memories, even inspiration.  In the prolonged period of COVID’s continuing waves, necessary restrictions and isolation music has been the best medicine for my spirit.

As I began to write, I realized that music has played an important role in my life for a long time.  My father’s family loved to sing together at family gatherings.   My parents danced around our living room to the big band music of Tommy Dorsey and Glen Miller.  I showed “musical aptitude” in grade school and was soon enrolled in piano and violin lessons.   Any promise of a musical career, however, was short-lived.  Despite weekly lessons, my preference was to play popular tunes “by ear” on the piano rather than practice the assigned keyboard exercises.  I quit violin lessons, and my piano lessons soon met a similar fate.  For my final recital piece I chose Chopin’s somber “Funeral March,” signaling a conclusion to my piano career, despite the despair of my piano teacher.   I settled on the school band as my next musical challenge but I was assigned a French horn to learn to play, since, as the band director explained, the horn section needed “beefing” up.  My band experience may have permanently soured any inclination to pursue a musical career.

Our high school band was predominantly a marching band. The members were outfitted in uniforms reminiscent of toy soldiers—unattractive for any developing girl.  The band accompanied small-town parades and halftime entertainment during high school football season. Worse, the repertoire of marching music for French horns translated to little more than bruised lips bouncing against the brass mouthpiece and a monotonous succession of after beats, “te ta, te ta,”.  Only when football season ended, did we have an opportunity to play more engaging music. In the Spring of my senior year, our band leader chose Dvořák’s “The New World Symphony” to play for the regional competition.

When our semi-conductor
Raised his baton, we sat there
Gaping at Marche Militaire,
Our mouth-opening number.
It seemed faintly familiar
(We’d rehearsed it all that winter),
But we attacked in such a blur,
No army anywhere
On its stomach or all fours
Could have squeezed though our cross fire…

I like to believe our enthusiasm for leading with those first few opening measures of the symphony was entirely understandable.    Given the opportunity to finally “shine” in the opening measures of Dvorak’s symphony, we made certain we were heard, blasting out the opening notes with no attention to subtlety or modulation.  I still remember the look on our band leader’s face.

By the last lost chord, our director
Looked older and soberer.
No doubt, in mind’s ear
Some band somewhere
In some Music of some Sphere
Was striking a note as pure
As the wishes of Franz Schubert,
But meanwhile here we were:
A lesson in everything minor,
Decomposing our first composer.

From: “The Junior High School Band Concert,” by David Wagoner; Traveling Light: Collected and New Poems.  University of Illinois Press, 1999. 

I gave up French horn when I left for college, opting instead to sing in the college choir my first year.  Despite ultimately veering into psychology, my short-lived musical forays had lasting benefits, fostering a deep and lasting love of music. Many years later, as a young wife and mother living in a small university town in the Maritimes, music returned to my life, this time in the form of a recorder quintet with four friends.   We practiced diligently each week, even occasionally performing in our community.  The weekly practices were a source of happiness and temporarily took me out of my unhappiness.   

A few short years later, my first husband drowned, and again, I found comfort in music during the long nights of grief and sorrow.  I recorded a musical history of our marriage, comprised of songs from the 70s and 80s, listening to it until the tape was finally too stretched and worn to be played.  Many years later, by then remarried and living in Southern California, I enrolled in African drumming lessons, learning and playing West African rhythms on the djembe and dunun. Whatever pressures I felt during the week vanished in the drumming classes. Drumming together with others was an inspiring and joyful activity, one I still miss doing.

As I look back on my musical life, what emerges is not only love and interest in music but my understanding of how beneficial music has been in my life.  I understand why music had such an important role in medicine and healing throughout history. The ancient Greeks believed music could heal the body and the soul. Ancient Egyptians and indigenous peoples used singing and chanting in their healing rituals. After World War II, the U.S. Veterans Administration incorporated music as an adjunct therapy for shell-shocked soldiers. Today, music therapy is widely used to promote healing and enhance the quality of patients ’lives. 

The power of music to integrate and cure is quite fundamental. It is the profoundest non-chemical medication. — Dr. Oliver Sacks, neurologist and author of Awakenings

There are many ways in which music is good for us, something I’ve experienced many times in my life.    Music is beneficial to heart health, positively affecting blood pressure, heartbeat and breathing. Used with cancer patients, it helps to decrease anxiety and ease nausea and is also effective in pain management. Music helps us to relax, reduces fatigue, stress, and alleviates depression. Used during exercise, music can enhance physical performance and help us exercise more efficiently. 

I now appreciate that however undistinguished my musical achievement was in my teens, there were still benefits gained from my experiences.  Music has the potential to enhance youthful self-esteem and academic performance.  As we age, it helps to protect mental sharpness and brain functioning.  Among Alzheimer’s and dementia patients, music has been shown to play an important role in enhancing memory, triggering life stories and face-name recognition, something I witnessed in interactions with my mother in her final years as an Alzheimer’s patient.

Music continues to inhabit my daily life. It’s been an important source of comfort and solace during these many months of COVID, helping to diminish anxiety, stress, restless nights and even the doldrums.  It has been my most available and comforting balm in this prolonged pandemic.  

I think I should have no other mortal wants if I could always have plenty of music. It seems to infuse strength into my limbs and ideas into my brain. Life seems to go on without effort when I am filled with music.

—George Bernard Shaw

Writing Suggestions:  How has music influenced your life?

  • Consider the role music has played in your life.  How has it been beneficial to you?
  • Was there particular music that helped you through treatment, recovery from surgical treatment or another difficult time?  Listen to it again, closing your eyes, and try to remember that time and how the music made you feel.
  • Recall a lullaby from childhood, a favorite song, a bit of classical music, or even the somewhat dissonant music from your high school band. What memories or stories does the music trigger?
  • Take any favorite musical recording and listen to it.  Keep your notebook nearby. Capture the random thoughts and associations that come to mind as you listen. Once the recording ends, begin freewriting. Re-read what you’ve written and underline one sentence that has power for you in some way.  Use that sentence to begin writing again on a fresh page. This time, set the timer for 15 minutes and see where your writing takes you.

February 6, 2022: When the Words Just Won’t Come

Published on by Sharon A. Bray, EdD2 Comments

“Writing about a writer’s block is better than not writing at all”
― Charles Bukowski, The Last Night of the Earth Poems

I have a confession.  For the past three weeks, I’ve been trying to write a new post for this blog and, generally, failing.  I’ve gotten the mental affliction that is the result of  prolonged pandemic living.  Inspiration is hiding in some dark corner and I can’t seem to coax it out.  For someone who writes, that lack of inspiration can simply increase one’s stress and add to the blockage.

This strange existence of the past two years has finally gotten the better of me—or at least, my brain.  “I feel like I’m moving through sludge,” I remarked to a friend this past week.  She too admitted feeling effects of this prolonged pandemic.  In fact, it would be difficult to find anyone who hasn’t been experiencing similar frustration, lethargy, blues or just a lack of motivation for ordinary tasks.  Thankfully, Toronto is beginning to open up again, although I’m not rushing into so-called normal living just yet.

But while the prolonged nature of the COVID pandemic has been worrisome, it’s fueled divisiveness and protest that only add to this sense of spiritual malaise.  I shun the news reports and headlines–they just unsettle me more. Yet I am saddened by the conflict and aggression that has appeared in Ottawa and beyond in the past many days.  It all challenges my sense of what this country is and has been for me, and why I chose to become a Canadian citizen so many years ago.  I can only hope that the pandemic will not permanently rob us of our humanity to one another.

So I admit to “writer’s block.  The  words just won’t come, or any that do appear on my notebook pages seem heavy and leaden.  It’s the emotion I and so many others have felt like during this pandemic. To wit,  I’ve  found more than a few articles on the impact of the Corona virus on writers’ block!   

 I know this siege of my  “writer’s block” will end or at least, be tempered as my expressive writing workshops begin.  Other’s stories, written and  shared, are uplifting in their honesty and humanness. Even though participants are writing out of life-threatening illness, their honesty and openness are the stuff of courage and hope.  I am always humbled and inspired by the experiences and stories shared with others in the writing groups. 

For the moment, however,  I am trying to honor the need to be more reflective in my daily writing practice, to let the approaching start dates for my workshops be my focus and spark my  inspiration.  I am also taking the advice offered by so many writers in the world to those  of us who write and sometimes face these empty periods.  So if, by chance,  you’re feeling a bit stuck too, I will share that advice to those of you who read this blog.  What is it my mother often said in the midst of any upsetting event?  “This too will pass.”  We can only hope.

Suggestions for re-igniting your writing:

  • Meditation or breathwork can be useful.  I use a short deep breathing exercise each morning before I open my notebook, letting my mind go where it goes as I concentrate on the breath.  It helps my focus and lightens my mood.
  • Music can be calming—and it can also be inspiring.  I have taken to writing with classical music playing very softly in the background.  It helps me settle down and focus.
  • When your worry or dampened spirits take over, name them.  Write them on the page of your notebook as a practice of releasing them.
  • Write about what’s troubling you—and why.  Invariably that leads to other topics, other experiences.  When something feels insistent for me or seems to need exploration,  I tag my notebook page so I can return to it.
  • READ.  A writer writes, but a writer also reads.  I have a steady diet of novels, essays about writing, articles of interest in healthcare, and daily, poetry.  Poetry is a balm, an inspiring and moving experience for me. 
  • Keep writing, but leave the worry behind about not “producing.” It’s not uncommon that you’ll write your way into something new you want to explore further.  My writing, in recent weeks, has been free-wheeling, sometimes reflective, sometimes all over the map, but among all the disconnected paragraphs, an idea or two comes out of nowhere that warrants pursuing.

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

Published on by Sharon A. Bray, EdD1 Comment

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.