The Necessity of Small Rituals

Habit

The shoes put on each time
left first, then right.

The morning potion’s teaspoon
of sweetness stirred always
for seven circlings, no fewer, no more,
into the cracked blue cup.

Touching the pocket for wallet,
for keys,
before closing the door.

How did we come
to believe these small rituals’ promise,
that we are today the selves we yesterday knew,
tomorrow will be?

(Excerpt from “Habit” by Jane Hirshfield, in Given Sugar, Given Salt, 2002)

In the past many weeks of the corona virus pandemic, our daily lives have changed virtually overnight.  Our usual habits and the patterns have all but disappeared or at the very least, been disrupted.  It’s unsettling, because it is in times of upheaval, we need those daily routines and habits most:  they steady us and give our days meaning.   

In times that are uncertain and stressful, as anthropologists’ studies have shown, people’s rituals become more important. In a recent article by Dimitris Xygalatas, appearing in The Washington Post, he cited the early work of anthropologist Bronislaw Malinowski, who studied inhabitants of the South Pacific islands in the early 1900’s.  Malinowski had observed that the islanders were more likely to employ rituals when faced with situations out of their control, such as the danger of fishing in shark-infested waters.  But such ritual activity in the face of danger or stress is not uncommon to any of us.  As Xygalatas points out, our reliance on ritualistic behavior typically increases during stressful events like wars and environmental threats.  

“Rituals take an extraordinary array of shapes and forms,” authors Gino and Norton stated in a 2013 Scientific American article.  Performed alone or together, whether in religious or other settings, they help to reduce anxiety, alleviate grief, or boost confidence.  Even simple rituals—habits—such as making time for quiet, meditation, a solitary walk, or even the simple act of grinding coffee beans for the morning coffee–whatever calms or nurtures our lives–can serve as a source of spiritual re-fueling, essential to our ability to navigate life’s ups and downs.  Rituals, whether more formal or in the form of everyday habits, provide a sense of the familiar, constancy, and a connection to others.  In that sense, they are healing.

Not only do our everyday rituals calm and feed us, those more formal ones, created to mark life’s passages, like birth, puberty, marriage or death, do even more for us.  While important in honoring transitions from one life chapter to the next, in times of uncertainty and change, our rituals also help us cope. They offer a sense of control in the chaos of human life, minimizing the anxiety, helplessness or depression we may feel without them.  Rituals give us a way to express our deepest feelings, offer meaning and connection to what is sacred.  In a study also reported by Dimitris Xygalatas, a study of Hindu people in Mauritius measured their heart rates before and after performing temple rituals. The people’s anxiety was lowered after the temple rituals were performed, demonstrating the importance of the collective rituals and ceremonies.  They do even more, Xygalatas explained, providing people with a sense of connection, increased generosity and even synchronizing their heart rates.  Rituals, whether formal or in our everyday habits and routines, help us navigate difficult times by providing some sense of the familiar and constancy. 

Rituals give significance to life passages, as Jeanne Achtenberg and colleagues discussed In Rituals of Healing (1994), and they also help us relax, re-connect with ourselves and the little pleasures in everyday life.  They are calming and help us concentrate on positive thoughts, all important to healing.

Ted Kooser, former Poet Laureate of the U.S. was diagnosed and treated for cancer in the late 1990’s, During the aftermath of diagnosis and treatment, his usual routine of writing daily had suffered.  He wrote …During the previous summer, depressed by my illness, preoccupied by the routines of my treatment, and feeling miserably sorry for myself, I’d all but given up on reading and writing…  As he began his recovery, he began a habit of early morning walks, describing its unexpected benefit:

“In the autumn of 1998, during my recovery from surgery and radiation for cancer, I began taking a two-mile walk each morning…hiking in the isolated country roads near where I live… One morning in November, following my walk, I surprised myself by trying my hand at a poem.  Soon I was writing every day…

The result was a delightful book of poetry, Winter Morning Walks: 100 Postcards to Jim Harrison, (2001).   Kooser’s daily morning walks were not only important to his recovery, but also to his life as a poet.  He re-established, once again, the ritual of writing daily, capturing this positive outcome in the final poem in the book: 

How important it must be

to someone

that I am alive, and walking,

and that I have written

these poems.

This morning the sun stood

right at the end of the road

and waited for me.

I confess the constant news of the continuing spread of the COVID 19 virus in Canada and the world has derailed me more than once—despite my best intentions.  Anxiety, worry, or frustration sometimes threatens to overtake me – especially if I spend too much time reading the government updates and accompanying articles in The Globe and Mail which all but demolish my regular morning writing practice.  I regained the desire to write with a “new habit,” giving myself the freedom to not write anything of substance but instead, writing humorous poems about my state of life in this unusual time.  I’ve shared those with my husband and some friends, resulting in a few moments of shared laughter.  I’ve written 4 or 5 “silly ditties” since— humor is a great stress reliever.

Social isolation meant that I was also denied my regular stop at our corner Starbucks, a frequent habit after my afternoon walks, so instead, I decided to bake—impromptu–using whatever ingredients I had.  Another habit formed as I decided to find a recipe for the perfect scone.   After turning out four batches in four weeks, baking has become a necessary habit, as it’s one I find surprisingly calming and more, requires quiet and focus not unlike meditation.  Besides, as psychologists tell us, the ritual of making something or doing creative work of any kind helps to reduce stress and anxiety. 

This is not a dress rehearsal…today is the only guarantee that you get…think of life as a terminal illness, because if you do, you will live it with joy and passion, as it ought to be lived. —Anna Quindlen

As my husband and I negotiate our now confined lives inside in a two-bedroom apartment, we’ve established little routines or habits that are comforting and helping us navigate through this time of crisis together.  We come together at 5 p.m. every evening to listen to music and talk over a glass of sherry before our evening meal.  It’s become a time that we are present for each other, one we find relaxing, and something we look forward to in this unusual time of social isolation.  We often reach out to friends and family during that time, whether by telephone or Face time.  Staying connected with each other is comforting and helps us overcome the ever-present sense of isolation and worry, and is an important activity in helping us all weather this time of crisis.  In the midst of it all, I sometimes wonder, will life be like when this is finally over?  What will have changed?  What will we have learned about ourselves and our lives? But those questions are for another time… For now we don’t think ahead too far; we take each day as it comes as best as we can; we keep our routines, our habits in place to help us manage our lives in this unusual time.

In the Middle

of a life that’s as complicated as everyone else’s,

struggling for balance, jugging time…

Each day, we must learn

again how to love, between morning’s quick coffee

and evening’s slow return. Steam from a pot of soup rises

mixing with the yeasty smell of baking bread.

For Consideration and Writing:

Whether a morning walk or run, a warm bath, meditation, a quiet time to write or simply gaze out the window, listening to music or losing one’s self in a good book, we all take comfort from our daily habits.   Whatever you find calming and comforting, your own habits and rituals can provide spiritual nourishment and healing so very necessary to our lives in this turbulent time.  How are you managing during this unusual time?  What routines or rituals are you finding most helpful? Which help to feed your inner life and navigate through this unusual and frightening time in the life of the world?     

March 18, 2020: A Practice of Managing Worry & Anxiety

…Then what I am afraid of comes. I live for a while in its sight.”  (Wendell Berry (This Day:  Sabbath Poems, Collected and New, 1979-2013 )

I admit it.  The corona virus has me on edge.  Since age and heart failure put me in the “greater risk” population, it may be part of the reason I awaken with the shadow of fear or worry close behind me.  The thing is, I know fear and anxiety are not good for my heart.  It’s a bit ironic, a kind of catch-22, because a diagnosis of heart failure is anxiety producing itself, and it’s progressive, so the undercurrent of unease never quite disappears. And when we’re anxious, it puts extra strain on our hearts, like increasing blood pressure, making us short of breath,  and in more serious cases, interfering with the heart’s normal functioning…nothing anyone living with heart failure or other cardiac conditions needs.

In Japanese, “the kanji (Japanese character) for fear, shows a leaking heart, for fear drains our spirit.                —Stephen Murphy-Shigematsu, PhD

According to Orly Vardeny, Associate Professor of Medicine at the University of Minnesota, “The corona virus’s main target is the lungs. But that could affect the heart, especially a diseased heart, which has to work harder to get oxygenated blood throughout the body…In general, you can think of it as something that is taxing the system as a whole.”  For someone who lives with heart failure, that’s a worry, because my heart doesn’t pump as efficiently as it once did. 

Fear, anxiety and worry all take their toll on my emotional and physical well-being.  While we are in the midst of this pandemic, I have to consciously work to  manage my fearful feelings. I follow all the basic health suggestions:  handwashing, sanitizing, staying away from social encounters, diet, exercise and necessary sleep.  But still, keeping my fear and worry in check requires a bit more self-discipline. Here are some of the things that have been helping me manage my level of anxiety and worry.

I’m limiting my exposure to the constant “buzz” and barrage of reports on social media and in the daily news.  Too much information increases worry, and that can result in panic.  It’s important to be in the know, yes, but as psychologists tell us, there’s a point at which information has the unintended effect of increasing your fear. 

I take a few breaks during the day to simply be quiet.  There’s a feature on my Apple watch that I now use regularly.  Every few hours, it prompts me to do a minute of deep breathing.  I pause, get quiet, and let the exercise of deep breathing for a few minutes lead me into a short period of meditation, freeing my mind of busy brain or any worrisome thoughts.  Simply be quiet, focusing on the here and now is wonderfully calming and relaxing.

There’s a sense of calm in keeping a regular routine, and my morning routine has become even more important to me as a way to quiet any worrisome or fearful thoughts. I’m up early, before my husband awakens, to claim the hour or so of solitude and quiet I crave–and need-for my writing practice.  It’s a ritual of sorts, freshly ground and brewed coffee, my open notebook, my pen moving across the page.

I place no requirements on this time, but write freely.  Whatever emerges on the page hardly matters—sometimes I vent, other times I write poetry or just write freely, staying open to whatever appears on the page.  What matters most is that it is restorative time for me. I watch the sun rise over Lake Ontario on clearer days, or simply notice life on the street below.  Sometimes nature offers a special gift, like the two Canadian geese, honking and waddling about on the rooftop next door, momentarily lost from their flock.  In those moments, I find gratitude—remembering just how lucky I am in so many ways.  And it calms me.

Today I am fortunate

 to have woken up

I am alive.

I have a precious human life.

I am not going to waste it…

I am going to …

expand my heart out to others…

(From:  “A Precious Human Life,” a prayer by His Holiness, the Dalai Lama)

 I’ve found that reaching out to and connecting with family and friends here, in Canada, Japan and the US has also helped to calm my fears.  While I have discovered that  mindfulness helps me to calm, focus, and reduce stress, so does honoring matters of the heart—connecting with people.  As Dr. Stephen Murphy-Shigematsu demonstrates in his book, From Mindfulness to Heartfulness, in worrisome times, our connection to and with one another are even more important to what we call “enlightenment.”  “The kanji (Japanese character) for mindfulness consists of two parts,” Dr. Murphy-Shigematsu explains, “the top part meaning “now,” and the bottom part meaning “heart.”   

All of us share in this worry over the impact of the corona virus, but the simple act of connection, whether online, by telephone, letters or a note written on a  greeting card, serves as a reminder that none of us are alone in our concerns or feelings.  As for my health concerns, I’m lucky to be use Medley, the smart phone app that records my weight, blood pressure, heart rate, and symptoms daily, which is monitored by my healthcare team at Toronto General’s Peter Munk Cardiac Center. This too, provides some solace, a sense of being connected to the people who provide my cardiac care.

Music is a big part of my life, especially classical, and is a necessary ingredient in self-care and inspiration.  It calms, inspires, and reminds me of the beauty and creative spirit that is part of being human.  I’ve also been moved by the inspirational You Tube videos of people in Italy, Spain and Israel, isolated in their apartment buildings because of the impact of the corona virus, playing and singing together from their balconies.  Last week, I discovered cellist Yo Yo Ma has released a series of videotapes on Facebook, the first “song of comfort” he offered was  Dvořák’s Going Home. Ma explained:  “In these days of anxiety, I wanted to find a way to continue to share some of the music that gives me comfort.” Yesterday’s  offering was  “Sarabande” from Bach’s Cello Suite No. 3, which he dedicated to the healthcare workers on the front lines.

So, we all ride it out, taking the necessary precautions, finding ways to stay connected, keeping our fear in check, and weathering this crisis, alone and together.  I find I’ve been thinking of my mother, whose admonitions and homespun prescriptions often had my siblings and me giggling behind her back. Yet she’d suffered more than a little hardship in her younger life, and looking back, I realize her many “mantras” was her way of coping and getting through tough times.  We were too young to understand it then, but we suffered from pain, illness or even an adolescent broken heart, she repeated one favorite mantra again and again:  This too shall pass, she’d say And yes, so too will this crisis, but for now, my challenge is to do all I can do to remain healthy and not be swept up in panic or fear. And frankly, that requires a little practice every single day.

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

(“The Peace of Wild Things,” by Wendell Berry, in:  Selected Poems, 1998)

For the Readers:

What is helping you get through this time?  How are you managing your worry or fears?   What resources or suggestions can you offer to others?  Feel free to comment on this post with some of your suggestions.   For now, stay safe; stay well.

Heart Failure as Teacher

…two roads diverged in a wood, and I — 
I took the one less traveled by, 
And that has made all the difference.

(From “The Road Less Traveled,” by Robert Frost)

It’s a familiar poem, one you were likely introduced to it in a high school English class.  Frost’s portrayal of a traveler choosing a direction as he comes to the fork in a road is a metaphor for life. We make choices daily, between one thing and the other, weighing one possibility against the other, assessing the benefits, costs, and risks.  Sometimes, our hearts wage war with our minds, our dreams with reality; other times, old habits, patterns and drives learned in childhood play repeatedly, pushing us toward old ways of being, even when our hearts cry “no!”  Ultimately, we have choices, deciding on one course of action over another.   Whatever we decide, we live out our choices, and our lives are changed by the choices we make.  Call me a slow learner, but my heart is winning that persistent battle between old ways of being and the way that, now, I am trying to live. 

     How we spend our days is, of course, how we spend our lives. –Annie Dillard

Living with heart failure has made me more aware of mortality and the relative shortness of 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, but that we waste a lot of it…life is long if you know how to use it.” 

Being a patient with heart failure has forced me to consider the “busyness” of the life I’ve led for the bulk of my adult years. Busyness driven by the need to achieve, something drummed into me early in life, and, when I don’t, feeling guilty or somehow inadequate.  It’s meant that for much of my life, as my husband and daughters would tell you, I have a very difficult time saying “no” to other’s requests for my participation in activities, initiatives, committees and the like, often pushing my desires aside to meet other obligations and living with more stress than is healthy.  It’s hardly a surprise that years of New Year’s resolutions to make more time for fun, relaxation, and even family, have rarely been successful for long.  Again, Seneca: “learning how to live takes a whole life.”  Perhaps I’m starting to understand what he meant. 

Some of my greatest teachers, as it turns out, are the cancer patients who join my expressive writing groups.  Week after week, they write, sharing their fears, questions, and lives through their stories and poetry.  They write with honesty and authentically.  Writing is the mechanism by which they release all the feelings–many of them conflicted–triggered by a diagnosis of cancer.  For some, they come to the group to write knowing they’ve been given a certain death sentence.   The suffering is real; the treatments often debilitating with surgeries that permanently alter their bodies. 

Two weeks ago, I led three workshop sessions for a group of young adults who had survived childhood cancer.  Survived, yes, but many who still bear the evidence of an aggressive and unforgiving illness, and who already are experiencing serious and long-term health issues from their disease and its treatment.  The clarity with which they write about the lives they intend to live–and are living–inspired and, at the same time, humbled me.  I came away grateful for their honesty, awed by their courage and determination to live life as fully–and meaningfully–as they can for however long they might live.

When I first returned to Toronto after several years living in California, I was eager to get involved in the work that I’ve found so meaningful, and Gilda’s Club welcomed me immediately.  But I was also inspired by discovering a vital and growing community for heart failure advocacy.  Besides, I have one very inspiring cardiologist in Dr. R., and when she asked if I wanted to be engaged, I said, “absolutely.” 

That’s still true, but it’s taken me the better part of a year and a half to define how I want to be engaged.  And that requires choices.  I slipped, all too easily, into old ways of being, saying “yes” to committee involvement, reading research like a graduate student, becoming a patient partner…and my life was, for a few months, dominated by heart failure.  That involvement had the effect of making me think more about it–not always in ways particularly beneficial to my fear of progression and my life ending sooner than I assumed.  In short, I was leaning toward depression, or at the very least, a case of the good old-fashioned blues. 

I began writing about it, and this blog was birthed.  But it’s been a challenge at times ( because of all the reasons I’ve written about in the past few months) as I’ve tried to figure out if what I write is helpful or interesting to other heart failure patients.  My “Writing Through Cancer” blog is, by comparison, relatively easy for me to write, but I have years of leading writing groups and hearing cancer patients’ stories as a source for inspiration. Perhaps my struggle in writing this blog has helped me gain clarity, although in ways I have yet to fully articulate, about how I want to live for however long that may be.  Maybe Seneca was right: it does take nearly a lifetime to learn how to live.

As I write this, I recall a poem I used many years ago in a class on writing and healing. Entitled “What Matters Then,” the poet asks the question of the reader and, beginning with a single gardenia on a branch, moves us to the essential, from bush to branch to the single flower.  It’s a winnowing down, something that resonates with me now as I am gaining the clarity to live each day engaged in what truly matters to me.

…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

What matters to me?  That I live as fully as possible each day.  That I have time with my family, husband, daughters and grandchildren.  Especially the grandchildren; they are the best medicine of all for my heart.  That I give back–it’s why I continue to volunteer in leading writing groups for cancer patients and what motivated me to become a patient partner.  That I make time for art and creativity:  writing, poetry, reading, music, art.  That I stay as physically active as I can.  That I practice humility:  there are always new things to learn.  That I recognize and accept my limits.  And not unimportantly, that I practice gratitude as my daily mantra.

What has living with heart failure taught me?  I think it has taught me how to live.  And that’s something, 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:

  • What have you learned about yourself from heart failure?
  • How has your life changed–in ways that are positive?
  • How do you want to spend your days–to live your life?

July 18, 2019: How Writing Helps Us Heal

(Preface:  I began this blog nearly one year ago, and, as the anniversary date approaches, I am looking over my posts and revisiting the motivation that initially prompted me to begin exploring the lived experience of heart failure.  I have always written, whether for myself or for publication.  It’s the way I make sense of life’s difficult chapters, the way in which I discover what I’m really feeling and why, something I have discovered to be healing and the reason why I lead writing groups for cancer patients.  My experiences and teaching prompted me to begin this blog and hope it might also inspire other heart failure patients to write from their experiences.  But have I managed to encourage others like you to write?  I don’t know.  So this month, I’ve changed the name of my blog to “Writing the Heart” and am re-visiting why writing and how can help us heal.)

______________________________________________

When the body breaks down, so does life.  Medicine may fix the body but it doesn’t put one’s life back together. — Arthur Frank, At the Will of the Body, 2002

            You’re lying in a hospital bed as the cardiologist enters the room.  He’s come to explain the results of the tests you’ve had since you collapsed while walking your dog, the reason you’ve been under observation for three days.  He is kind, with a gentle manner that calms you. Then he offers his diagnosis, his words strange and unreal.  “Heart Failure.”

” What?  You mean a heart attack?”  You recall that one of your uncles died of a massive heart attack in his fifties.

“No, heart failure…” and the cardiologist calmly explains that your heart, your pump and life-giving engine, isn’t working as well as it should.  He says something about dilated cardiomyopathy, atrial fibrillation and ventricular tachycardia, unfamiliar terms you’ll ask him to repeat and even then, look up again later. You’re hovering somewhere between the real and the unreal, feeling as if the universe is playing a terrible joke on you.  Your heart.  Failing?  How can it be failing?  You’re thrust into a whirlwind of disbelief and confusion, and, like Dorothy in the Wizard of Oz, feel as if you’ve been dropped into some strange new territory where nothing makes sense.

You’ve just become a heart failure patient.

The doctor speaks again, detailing the specifics of your diagnosis.  He says something about an implanted cardiac device, a defibrillator.  A what?  He may as well be speaking a foreign language.  You listen without really hearing as your world begins to spin out of control.  What you feel is fear — and lots of it.  However, your feelings are not unique.  Any serious or life threatening illness reaches far beyond the physical.  It affects every aspect of your being, including your mind, emotions and spirit.  There’s no cure for heart failure, and most of us are not heart transplant candidates.  ICDs, medicines, even surgeries, can help manage the condition for some time, yet we all must come to terms with what it means for our lives, how we can live for as long and as fully as we can and how we adjust to an altered physical self and navigate the emotions that accompany heart failure.

It’s why I write.

I write about illness to work out some terms in which it can be accepted…experiencing it fully, then letting go and moving on.  — Arthur Frank, sociologist, writing about his heart attack and prostate cancer, At the Will of the Body, 2002)

I’ve written since I was a young girl, sorting through the emotional ups and downs of my teenage years, and later, as I matured,  through young love and broken hearts. Then, thirty years ago, my husband drowned, and my life changed overnight.  I turned to what had always been my lifeline in times of change and struggle:  writing.  Several years later, I was told I had cancer, and writing was my refuge, a way to safely express my turbulent emotions, translate them into words and make sense of them.

Give sorrow words,” Shakespeare wrote in Macbeth. “the grief that does not speak/whispers o’er the fraught heart and bids it break (Act 4, Scene 3).  I was experiencing what poets and novelists alike had long acknowledged. Writing helps us make sense of trauma, illness and loss.  Then, over two decades ago, psychologists began to study the effects of writing on health in earnest.  As psychologists James Pennebaker and Joshua Smyth described, expressing difficult emotions on paper and getting them outside the body, had measurable health benefits (Opening Up by Writing It Down, 2016).

Writing…about traumatic experience …can produce measurable changes in physical and mental health, … can also affect people’s sleep habits, work efficiency and how they connect with others.  –Dr. James W. Pennebaker, PhD, University of Texas

The psychologists gave this kind of writing a name:  Expressive writing, defined as personal writing about a difficult or stressful event without attention to form, grammar or spelling.  It’s a process of pouring out one’s emotions and thoughts on the page,  less about what happened and more about what you feel about what has happened.  Now, over 400 studies on the effects of expressive writing have been studied with many different populations, demonstrating its various health benefits such as lessened anxiety, improved quality of sleep, lowered heart rate and blood pressure, and strengthened antibody responses.

But writing does even more for us.  It helps us deal with strong or difficult emotions, express and describe stressful and traumatic events, and organize thoughts and feelings.  Writing is about meaning making.  It helps us with understanding and self-awareness.  Writing can help connect us to others.

How?  As his research continued, Pennebaker discovered that the most healing kind of writing did more than simply express difficult feelings, something novelist Anais Nin had noted many years earlier.  “When we see our suffering as story,” she wrote, “we are saved.”  Simply venting emotions doesn’t do enough to relieve stress and improve health.  But when you make connections between what you feel and why, your writing begins to take on shape and form.  It becomes a coherent narrative– a story– and that’s the kind of writing that Pennebaker and his colleagues found is the most healing.  Stories are the way we communicate with one another, and they are the currency in medicine shared between doctor and patient.

In the telling of our personal lives, we’re reminded of our basic, human qualities—our vulnerabilities and strengths, foolishness and wisdom, who we are…, through the exchange  of stories, we help heal each other’s spirits.           — Patrice Vecchione, Writing and the Spiritual Life (2001)

The power of writing to heal is something I witness repeatedly in the writing groups I lead for cancer patients.  In the few weeks together,  participants move from the raw, emotional writing typical of the first meeting, and gradually, begin to write stories into stories, poetry, or personal narratives that express and explore their illness and lives.  Invariably, they move the writer to new understanding, insight or meaning.  Their shared stories also build connection and community between people, helping to overcome the loneliness and isolation often created by a serious illness.

Writing is healing, in part, because it is transformative.  As your stories change, so does your life. You gain new insights and perspective, not only in how you see your life, but the way in which you act on it too.  That’s the power in writing to heal.  A pen and a notebook are all you need.  What matters most is that you write, freely and honestly without worrying whether or not it’s “good enough.”  It’s your story, and as author Dorothy Allison so beautifully reminded her readers, “I am the only one who can tell my story and say what it means.”

Why not explore writing’s power to help you heal?

Writing Suggestions:

  1. Two Prompts Get You Started:
  • The moment whenThink about the very first moment you were told you had cancer. Close your eyes and try to remember as many details as you can, for example, the setting, quality of light, things in the room, sounds, where you sat, and so on.  Then think about that moment just before you heard the word “cancer.”  The look on your doctor’s face, his/her body posture, or the ringing of the telephone.  What were you feeling?  Now write for 15 minutes, taking yourself into that moment gradually by describing as much detail as you can.
  • Write a letter to your heart. Once during every series of workshops, I ask the participants to address their illness directly.  It takes the form of a letter, one in which you say what you feel about your illness directly to your heart.  Here’s an excerpt from a “letter to cancer” written by a former cancer writing workshop member:

Cancer:  You entered my life without my permission. You tried to turn my body against me, leaving pain and uncertainty in your wake… Because of you I wondered if I would see my children grow up… You made me feel like less of a woman …You took my hair and scarred my body. You made me cringe at my own reflection in the mirror… (former writing group member)

  1. Beginning to Write
  • First, get comfortable in a quiet place.
  • Keep your writing in a spiral bound notebook (or file on your laptop) so you can, from time to time, re-read old entries and reflect on your changes.
  • Set the timer for 15 minutes, and write about anything, but do it without stopping. Don’t worry about spelling, punctuation or grammar.  Just write.
  • When the timer goes off, read what you’ve written, then put it aside for a day or two.
  • Then re-read. Highlight those passages that stand out for you.  Why?  If you feel like it, you can expand on what you’ve written or even revise your first attempt, but that’s optional.
  • Find a time two or three times a week when you are able to write without interruption. It doesn’t have to be much.  Set a timer for 10 or 15 minutes and begin with anything, even “I don’t have anything to write this morning…” but keep the pen moving until the timer stops.  You will gradually write your way into what’s important.  Try making writing a part of your healing.

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Are you interested in sharing some of your writing with other heart failure patients?  I’m adding a new page to this site, “Voices of Heart Failure,” to create an opportunity for heart failure patients to share some of their writing with others.  If you’re interested, you can contact me by clicking HERE, and I’ll respond with specific information about submitting, getting permission to publish, and details about the kind of writing to be featured.– I look forward to hearing from you.– Sharon

June 17, 2019: In the Surgical Waiting Room

We sit on the bench in the hospital corridor
next to the cafeteria, and we wait.
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…

(From: “What Waiting Is,” by Robert Carroll, 1998)

I’ve sat in waiting rooms more than a few times in my life, like the anxious hours at Sick Kids when my then twelve-year-old daughter underwent hip surgery or sitting in the over-crowded surgical waiting room while my husband had a cancerous kidney removed.  For those of us confined to the surgical waiting room for the news of the surgical outcome, the hands of the clock move slowly, despite how many times we check it.  It’s the agony of waiting.

“Here, stress, anxiety, uncertainty and fear serve to make even the shortest of waits seem unbearable.  Families sit crouched forward in their uncomfortable chairs watching the door in hopes of preservation of a life or, unfortunately, sometimes by a less desirable outcome.”  –Kevin Campbell, MD, “The Psychology of the Surgical Waiting Room: Personal Adventures in Waiting,” 2012)

There have also been times that my spouse has waited for me to undergo surgery, as he did again last Friday.  But this was a waiting experience we ended up sharing–something we hadn’t anticipated would occur.  I was scheduled for a “pocket revision” and replacement of my ICD in the hospital’s day surgery unit.  Even before we sat down,  I was nervous.  While the procedure is considered routine, the prospect of general anesthesia and any kind of surgery are always anxiety producing for me.  I’m not unusual.  Studies have consistently demonstrated that the waiting experience for same day surgeries adds stress to patients who are already anxious.

Yet I had no idea that my day would become as stressful as it did.  We’d arrived at the hospital at 9 a.m. for blood tests as required, waiting nearly an hour for my name to be called.  But we were upstairs and checking in the Surgical Admissions Unit at ten o’clock, just as I’d been directed to do.  I was somewhat alarmed to see the waiting rooms nearly full, but I pushed my concern aside, opened up a book, and began reading.

One by one, patients were called in to exchange their clothes for a hospital gown and taken to the pre-op section.   Sometime after 1 p.m., I finally approached the nurse stationed near the waiting area.  Did she have any idea of how much longer I’d be waiting?  She apologized, saying patients had arrived all at once  with some even coming late, but, she assured me, there were just two more patients in front of me.  An hour and a half later,  my husband and I were the only occupants remaining in the waiting room.  I was thirsty, hungry, and increasingly anxious.  And by the time the nurse  ended her shift and the cleaning staff person appeared, I was downright worried.  Finally, an hour later, after the operating nurse appeared and told me my surgery would need to be rescheduled, I was a wreck.  Downcast and exhausted, we left nearly seven hours after we’d first arrived earlier that morning.  It was a waiting ordeal I have no desire to repeat.

But we are all forced is forced to wait many times in our lives.   I think of those heart patients who wait–with hope, with fear–for heart transplant surgery and finding a suitable donor.  I hear cancer patient’s stories of the waiting they do for referrals, tests, surgeries, treatments–all the while wondering, as Susan Gubar describes, “who knows what appalling cells are conspiring within my body to destroy my being?” (In “Well,” New York Times, 03/12/15).  I read “Waiting” (2008), a short story by E.C. Osondu, describing how refugees wait in a camp, their homes destroyed by war, without water or food, hoping and praying for relief, for rain.  These experiences help me put my waiting experience in perspective–it’s little more than a minor irritation by comparison.

“Every watch is broken in the waiting room, ” Nurse Sonja Schwartzbach writes, “better to count your blessings than to measure the seconds.”  Dr. Kevin Campbell suggests there are four common themes to our psychology of waiting:

  • Unoccupied time feels longer than occupied time.
  • Anxiety makes waits seem longer.
  • Uncertain waits seem longer than finite waits.
  • Solo waits seem longer than group waits.

Dr. Sheila Wijayasinghe, writing in a recent Globe and Mail column, offered a physician’s perspective on the time patients spend waiting.  “No doctor likes running behind,” she wrote, “and most try to keep on time out of respect for patients’ schedules and busy lives.  But even with the best of intentions, we end up running behind due to unpredictable circumstances.”  This is likely truer in a day surgery unit than even a physician’s office, especially when it’s surgery that involves the heart.

Nonetheless, waiting has never been easy for me–I am action-oriented, even impatient at times, despite my best attempts to quell my toe tapping tendencies.  My surgery has been rescheduled for tomorrow.  I’ll arrive on time, take my place in the waiting room, and while the time may seem to drag on slowly, I’ll have to accept what I cannot control, to let things unfold as they will.  Eventually, my new ICD will be in place, and I won’t be waiting–at least not for that.  After all, this is life, and it will surely require, more than a few times, that I wait.

What you do with time

is what a grandmother clock

does with it:  strike twelve

and take its time doing it.

You’re the clock: time passes,

you remain.  And wait.

(From “Mother,”  by Herman de Coninck, In:  The Plural of Happiness, 2006)

Writing Suggestions:

  • What do the words “waiting room” conjure up for you?
  • Write about an experience you’ve had in a doctor’s or hospital waiting room.
  • What was the situation? Were you waiting for a loved one?  Or were you waiting for a procedure?
  • What did you experience?  What was the outcome?
  • Write about the “helplessness” of waiting.

 

 

May 4, 2019: This Heart of Mine

…it’s not easy to think about the heart unless trouble arises.–John Stone, MD

This past Wednesday I began another expressive writing series at Gilda’s Club, an organization founded in memory of comedian Gilda Radner to provide support and services to people living with cancer.  The workshops, which I began nearly 20 years ago, inspired by the research on writing and health from psychologist James Pennebaker, is an 8 week series designed to encourage participants to write and share their stories of cancer.  At each meeting, I offer writing prompts and suggestions aimed at different aspects of living with cancer.  In a typical first session, such Wednesday’s, we begin with the moment of diagnosis, of becoming a cancer patient.  The two different prompts I used in our initial meeting were:  1) describe the moment you first heard “you have cancer,” and 2) when you think of cancer, what are the metaphors you use to describe it?”

It was only later, after the session ended, that I thought more about the images and words they used to describe cancer–not just their metaphors, but how differently their words are than those I use to describe heart failure.  What I feel for my damaged heart can only be considered as protective, even tender.  Not so with my group members’ feelings about cancer.  Their metaphors had no tenderness in them.  For example, cancer was compared to a rotting fence, a brick, a death sentence, an evil invader, a boxer in a fight for life, a fast growing weed, even a cockroach.  Not surprisingly, the most prevalent metaphor used in the cancer literature is still one of battle–a fight against the disease.

But the heart is no invader, and the use of metaphors in heart disease, transplant or failure, as researchers Biglino, Layton and associates discussed, are limited when compared to other serious illnesses like HIV/AIDS or cancer.  As cardiologist Sandeep Jauhar, MD describes in his book,  Heart:  A History (2018), our “second” or metaphorical heart has long been associated with feelings, considered as the locus of emotions even across different cultures. While science has ultimately corrected those misassumptions, these earlier connotations continue to influence the way in which we talk about our hearts.

I turned again to The Cancer Poetry Project, two favorite volumes of poetry written by patients, caretakers and medical professionals and in some poems, found metaphors of battle, cancer as enemy,  spy,  shark, or an invader, among others.  Metaphors are, as many have pointed out and the literature confirms, commonly used in the way we talk about cancer.  But in matters of heart disease and failure, even after scouring LitMed, NYU’s Literature, Arts, Medicine Database for relevant poetry and literature, I was disappointed to find scant offerings compared to cancer.  I returned to some of the books on the human heart that have recently taken up residence on my bookshelves.  Again, I was struck by the paucity of metaphors to describe our life-giving organ.  For example, Albert Carter III, writing in Our Human Hearts (2006) described the contemporary view of the heart, as ” a pump, and one worth caring for” p.35), while other authors referred to it as an engine.

I didn’t think much about my heart until after I was hospitalized and diagnosed with heart failure in 2008.  Since then, I’ve also compared my heart to an engine,  the life-giving one that one keeps all systems running.  It’s a real workhorse, hard working, steady and, for at least two-thirds of my life, reliable.  When I think of my “engine,” I recall my high school sweetheart’s old Model A Ford, a real jalopy by today’s standards.  He nursed and tinkered with the old engine, determined to keep it running until we’d graduated and left for university.  In some ways, I consider my medications,  daily recording of my vitals, even the bothersome bulge of the ICD below my collarbone are the regular tinkering of my heart, my engine, designed to keep it running for as long as it can.

The tenderness I feel for my heart is expressed in the way I talk it.  Yes, you read it right:  I talk to my heart.  In my cancer writing groups, I often prompt the members to address their cancer as if it is a character.  They do, and the writing is always descriptive and strong,  but more than talking to their cancer,  they talk back to it, as if addressing a bully.   And there is such intensity in their words that you think they just might send cancer packing–and soon. 

I have never “talked back” to my heart; I feel no fury toward it.  I’ve only talked to it–and with a great deal of compassion and tenderness.  It happens almost unconsciously.  If I am short of breath or my heart rate increases , thumping loudly against my chest after walking uphill or climbing the four flights of stairs to my daughter’s apartment, my hand reflexively moves to my chest, the place where my ICD bulges beneath the skin, and I pat it gently as a mother might soothe her crying infant and quietly say,  “Slow down a little.”  “It’ll be all right.”

There are times I wonder if I might have been responsible for my heart’s failure.  Besides the radiation therapy to my left breast twenty years ago, my heart and soul have  been through a lot of stressful wear and tear–a series of difficult and extremely emotional events that occurred from my 20s through my 50s, all involving unexpected and significant losses, sorrow and tragedy–events I have described as truly “heartbreaking.”  Little did I know how apt the adjective was at the time.   As Dr. Sandeep Janhar said, “Even if the heart is not the seat of emotions, it is highly responsive to them…a record of our emotional life is written on our hearts…The biological heart is extraordinarily sensitive to our emotional system–to the metaphorical heart…” p. 23).   Perhaps it’s little wonder that I sometimes feel as if I could have somehow prevented my heart failure, whether that is realistic or not.  And again, my hand moves to my chest, and I whisper, “I’m sorry,” to my battered and weary heart.

Just as heart failure does, cancer brings us face to face with the prospect of early mortality.  Fear, in those first stressful months after a diagnosis, is a constant companion.  And yet, in cancer, unlike heart failure, there is hope.  With the continuing medical advances in cancer treatment, many  patients now enjoy long periods of remission, some even declared “cancer-free.”

Heart failure, by comparison, doesn’t come with that kind of hope, save for those who undergo heart transplants.  I’m not a transplant candidate, but it took me a long time to accept that heart failure was a progressive condition. When I finally read the statistics, faced the facts and the gradual decline in my heart’s functioning, I was dogged by a persistent shadow of fear and depression for months.  Finally, I turned to what I have always done in times of upheaval: I began to write, attempting to unpack and understand the underlying fears and emotions by making them visible on the page.  It helped, although I still don’t find it easy to do.

I now think of myself as living well with heart failure.  Thanks to my cardiologist and the medical team at the Peter Munk Cardiac Center, new medications, their iphone app “Medley,” which I use to record and report my vitals each day, I don’t fear heart failure in the ways I once did.  Instead, I focus on the here and now.  I cheer my heart on as my blood pressure and heart rate remain at a consistent level, motivating me to continue living a heart healthy lifestyle.  I try to live as fully and presently as I can.

In fact, my heart health regimen has given new meaning to the flyrics of a favorite old Johnny Cash song.  Cash apparently wanted to write a song that said “I’m going to be true not only to those who believe in me and depend on me, but to myself and to God — a song that might give courage to others as well as myself.” (From Johnny Cash, Man in Black, 1975, pp. 87-88).  His song has inspired many people from all walks of life over the years.  For me, the song serves as a kind of promise to my heart, one I frequently sing aloud (much to the consternation of my husband).

I keep a close watch on this heart of mine

I keep my eyes wide open all the time

I keep the ends out for the tie that binds

Because you’re mine, I walk the line…

(From:  “I Walk the Line,” written by Rodney Crowell and Johnny Cash, 1956)

Well, I’m walking the line all right.  I’ve learned to say “no” when I need to conserve energy; I act on my cardiologist’s advice, get a good night’s sleep, record my vitals, and take my medications twice daily as prescribed.  I have more routine in my life now than I once did, but it’s probably healthier.  I begin my day with quiet, a routine of writing and a regimen of Pilates stretches.  I eat a heart healthy diet, walk as much as I can, occasionally swim, and practice simple meditation when worry or stress creeps up on me.  I am intent on doing all I can to keep this heart of mine, this engine of life, going for as long as possible.  My heart seems to agree.  After all, we are in this together.

 

Writing Suggestions:

  • When you think of your heart, what images or descriptors come to mind?  What metaphors do you use, consciously or unconsciously, to describe your heart?
  • Consider John Stone’s observation that it’s difficult to think about the heart until it’s in trouble.  Before heart failure, did you think much about your heart?  If so, in what ways?  After heart failure, what changed in your feelings or thoughts about your heart.
  • If you “talked” to your heart, what would you say to it?

 

March 30, 2019: In the Kingdom of the Ill

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

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

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

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

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

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

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

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

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

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

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

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

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

In the telling of our personal lives, we’re reminded of our basic, human qualities—our vulnerabilities and strengths, foolishness and wisdom, who we are…, through the exchange of stories, we help heal each other’s spirits. (Patrice Vecchione, Writing and the Spiritual Life, 2001)

Writing Suggestions:

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

What has been the most helpful or supportive experience you’ve had as a patient?

February 25, 2019: The Loneliness of Heart Failure

One is the loneliest number
One is the loneliest number
One is the loneliest number that you’ll ever do…”

(“One,” sung by Three Dog Night, lyrics by Harry Nilsson, 1968)

If you passed me on the street, you wouldn’t know that my heart no longer functions properly, unable to pump blood through my body as effectively as it once did.  You wouldn’t realize my condition is chronic and progressive, and one without a cure.  You might notice–if you’re paying attention–that I no longer walk quickly uphill and sometimes pause for a moment to catch my breath; besides, there are others on the street walking more slowly than I.  There is nothing visible to suggest that I am a heart failure patient; the telltale bulge of my ICD is hidden by shirts or sweaters.  Yet it’s more than likely that I’ve passed many others whose hearts are similarly weakened, because according to Heart & Stroke Canada, over 600,000 Canadians live with heart failure.  In fact, more women in Canada die from it than breast cancer.

Since I was first diagnosed with heart failure over ten years ago, I’ve found it to be a relatively solitary experience. Only recently, since our return to Toronto, have I actually met other heart failure patients.  However, unlike the cancer community which I’ve been involved with for nearly 20 years, I’ve found relatively few resources or face-to-face peer support programs available to those of us who are heart failure patients, despite the fact that heart disease kills approximately seven times more women than breast cancer, and in Ontario, more women with heart failure die from it than men.    “Heart failure,” I’ve often remarked, “is a lonely condition.”

That’s even more disturbing to me, because loneliness–defined as the “longing for greater social interaction”– is bad for our health. Ruth Livingston, PhD, the founder and director of Living with Medical Conditions, writing in a 2011 Psychology Today article, stated:

Being lonely can itself be dangerous to one’s health. Loneliness can double a person’s chances of catching a cold and, worse, lonely people are four times more likely to have a heart attack and, once they do, four times more likely to die from it…Further,… loneliness has an effect on the immune system: …it reduces antibody production and antiviral responses, protective against health risks. Loneliness, then —all alone — is a hazard. 

A 2018 article appearing in The Globe & Mail by journalist Wendy Leung referenced findings from a 2017 research study conducted by a Rice University team.  They found that “loneliness puts people at risk for premature mortality and all kinds of other physical illnesses.”

Why?  Not only is loneliness a source of stress, but they stated, “a sense of being cared for and loved is a crucial factor in our well-being,” something many research studies have consistently concluded.  Some researchers even suggest we are experiencing an “epidemic of loneliness,” and not surprisingly, it is “more pervasive” in countries where social media use is high.  Higher uses of social media often result in a person feeling more socially isolated, not less.  According to a 2018 article published in The Montreal Gazette, British prime minister Theresa May recently appointed a “minister for loneliness” in response to Britain’s growing issue of social isolation.  Meanwhile, in Canada, “research shows …one in five Canadians experience some level of loneliness or isolation.”

One in five patients with heart failure suffers depression, which adversely affects their outcomes and quality of life.  Mental health is a vital consideration for all health care teams who support the over 1 million Canadians with heart failure.  — Ted Rogers Centre for Heart Research, January 30, 2019

Not surprisingly, loneliness often leads to depression.  In a one-year follow-up study with heart failure patients, loneliness was associated with higher levels of depression.  Let’s face it:  loneliness is, quite simply, bad for our hearts, yet it’s not at all an uncommon feeling among heart patients.  Worse, a lack of social support is related to poorer health outcomes, regardless of one’s heart condition. Several studies have underlined the importance of social support on cardiac health.  For example, In three studies of loneliness among adults, those with heart problems had the highest loneliness scores, putting them at greater risk for further complications or death.  In other studies focused on heart failure patients, loneliness was also associated with more hospitalizations and re-hospitalizations.

I’m dating myself, I know, but as I write, the opening lyrics of the song, “People,” plays in my head.  It was a Grammy award-winning song sung by Barbra Streisand in the 1964 film, “Funny Girl”.

People

People who need people

Are the luckiest people in the world…

Streisand was singing about love, not heart failure, but it turns out that we all need some sense of social inclusion and support.  These may well be important factors in disease resistance.  According to one group of Canadian cardiologists, interpersonal support is “a protective factor … associated with lower incidence of coronary artery disease, fewer adverse events, increased longevity and better psychosocial function” (Archive of Cardiovascular Disease, 2015, 108, 417-445 ).

Given the numbers of studies on loneliness and social support in heart failure I’ve found and read (too many to mention here) raises the question why there aren’t more psycho-social support programs for heart failure patients–something I’ve been asking more frequently.  We’re very lucky to have people like Jillian Code, two-time heart transplant patient and founder of the HeartLife Foundation, Canada’s first national patient-led heart failure organization,  or Jackie Ratz, a Manitoba heart failure patient, patient advocate, and founder of founder of a Facebook support group Canadian Women with Medical Heart Issues, each of whom have initiated resources and online sites aimed at supporting those of us similarly diagnosed–work that truly deserves commendation.   But we still need more kinds of psycho-social support resources.

Although I’m relatively new to the heart failure community in Canada, when I was first diagnosed and treated in California, my experience was even more solitary and isolating. Other than one very mediocre education workshop I was assigned to attend, I found nothing even close to the wealth of patient support programs in the cancer community, where I’d been a patient and a volunteer program leader since 2000 (which I continue at Gilda’s Club here in Toronto).  Now, thanks to my extraordinary cardiologist, who urged me to become “engaged” at my very first appointment with her, I’ve begun participating in committees and initiatives concerned with heart failure care,  becoming a “patient partner” locally, and writing from my personal experience as a patient from time to time in this blog.  I hope that this enables me to make a meaningful contribution to help address that “other” part of the heart–the one that sometimes experiences loneliness, isolation, or depression.   Besides, “engagement” is good for my heart too.

Thanks to Wendy Leung’s Globe & Mail article, I learned about a unique initiative by  Toronto graphic designer Marissa Korda.  She designed and launched “The Loneliness Project,”  in the fall of 2017, inviting individuals to share their stories and experiences of loneliness on her online site–a way of telling their stories to others who may be also be feeling lonely. Those who do are prompted by one or more of Korda’s questions:

.  When was the last time you felt lonely?

.  What does loneliness mean?

.  Tell a story of a time you felt most lonely.

.  Describe one of the first times you realized you were lonely.

Writing from your personal experiences of illness, as participants in my writing groups attest, is one antidote for loneliness.  An online community like Korda’s may be one way another way to share your experience and, at the same time, stick your toe in the water to make social connections that help combat loneliness.  You can read more about Korda’s project and the inspiration for it here.

Loneliness may be common to anyone at times, but when you are living with heart failure, it’s important to have social support and to find things to help diminish your loneliness.   Even simple activities like taking a walk, sitting in a sunlit garden, or reaching out to a friend can help combat those feelings of isolation.  Take just a step at a time, but try to re-engage with the things that normally make you feel better.  Reach out; reconnect with friends and family.  It’s good for your health and a powerful way to overcome loneliness–because, As Bette Midler sang in her 1972 album, The Divine Miss M., “you got to have friends…”  :

...And I am all alone
There is no one here beside me
And my problems have all gone
There is no one to deride me

But you got to have friends
The feeling’s oh so strong
You got to have friends
To make that day last long…

(Lyrics by Mark Klingman & Buzzy Linhart)

Writing Suggestions:

  • What is your experience of loneliness as someone with heart failure? Describe it.
  • What helped you overcome it?
  • What images or metaphors best capture your experience or feelings of loneliness. Expand on them and create a poem, a narrative, a song.
  • What has helped you diminish the feelings of loneliness that can accompany living with heart failure from time to time?
  • What advice do you have for the newly diagnosed?

February 3, 2019: What Do You Want in A Doctor?

A three thousand year tradition, which bonded doctor and patient in a special affinity of trust, is being traded for a new type of relationship.  Healing is replaced with treating; caring is supplanted by managing, and the art of listening is taken over by technological procedures.  — (The Lost Art of Healing:  Practicing Compassion in Medicine, by Bernard Lown, MD, 1996).

I recently changed from one family physician to another.  When we first returned to Toronto after many years in California,  I’d endured weeks of frustration of trying to find a family doctor.  After several referrals that only resulted in “I’m sorry, Dr. So & So is not taking any new patients,” I finally found a doctor, recently graduated from medical school, who was taking new patients. Given my medical history, I had concerns about becoming a patient to a doctor without significant experience, but it seemed I had little choice but to sign up.

Our was discussion at the first meeting was relatively brief, but I reasoned that with more than a few medical experiences and my age, I was not at all shy about asking for referrals or expressing concerns.  I pushed my reluctances aside and became her patient for an entire year, but all the while, experiencing a vague concern about a lack of connection or trust.  While I never had difficulty being seen my appointments rarely lasted beyond 10 – 15 minutes.  As I’d begin describing the issues or symptoms that prompted  my appointment, she typed, her hands flying across her keyboard while I spoke.  Her questions were few, and even as I left her office with a referral or prescription in hand, a sense of unease lingered.

Paracelsus, the great German physician of his era, included among the basic qualification s of a physician “intuition which is necessary to understand the patient, his body, his disease.  He must have the feel and touch which makes it possible for him to be in sympathetic communication with the patient’s spirit…the aim is to understand the medical problem as well as the person behind the symptoms.  (Lown, p. 3, 29)

To be clear, I feel very lucky to have had the experience of being a patient of two extraordinary physicians; one, a neurosurgeon,  early in life, and the other, my current cardiologist.  Dr. C., my neurosurgeon, literally saved my life when I was a teenager, and I quickly discovered that he saved–and touched–many more lives than my own.  Patients’ faces lit up when he walked into the room,  radiating compassion, warmth, and optimism.  He listened intently to my fears and questions, laughed at my attempts to introduce humor into my condition, and held my hand when tears overtook me.  Once I was was well enough to be mobile, he encouraged me to visit with other patients in the hospital–which I did, witnessing the sorrow of a young mother whose two-year-old son was dying or another teenager with head trauma from a car accident, neither as fortunate as I was.   Intended or not, he was teaching me about compassion and healing.  Dr. C.  operated on me twice in less than a year,  and long after I’d resumed a normal life, I continued to stay in touch with him throughout high school, college, marriage, and my career journeys  He always replied, writing in an elegant cursive, once telling me how much it meant to him to hear from me–saying that a doctor didn’t often hear from former patients.  When he died a few years ago, the expressions of gratitude were numerous from those whose lives he’d touched.  Dr. C. was an extraordinary neurosurgeon, but he was also a healer–and that required far more than his technical expertise and scalpel in treating his patients and saving lives.  Now, in the autumn of my life, I’ve been fortunate to experience, once again, not only considerable knowledge and expertise, but compassion from the cardiologist who deals with the matters of my heart.  It makes a significant difference to me as a patient.

“Choosing a doctor is difficult because it is our first explicit confrontation of our illness…to be sick brings out all our prejudices and primitive feelings…You don’t really know that you’re ill until the doctor tells you so…The knowledge that you’re ill is one of the momentous experiences in life….When the doctor told me I was ill it was like an immense electric shock… I began to look around me with new eyes, and the first thing I looked at was my doctor…  Now that I have cancer of the prostate, they lymph nodes, and part of my skeleton, what do I want in a doctor? pp. 36-38).

Heart failure, cancer–these are “momentous experiences” in our lives. In my expressive writing workshops with cancer patients, I encourage participants to write about their medical experiences with various doctors, asking,  “What do you want in a doctor?”  I was inspired to do so after reading Anatole Broyard’s book, Intoxicated By My Illness (1992), a collection of autobiographical essays written during his prostate cancer treatment and published two years after his death.  In Part Three, “The Patient Examines the Doctor,” Broyard attempts to answer this question in an attempt to understand his feelings about his doctor.  He describes several characteristics he would like to have in his doctor:

.  a doctor with magic as well as medical ability

.  a close reader of illness and a good critic of medicine

.  someone who enjoyed me

.  gropes for my spirit as well as my prostate

.  surveys my soul as well as my flesh

.  understands that beneath my surface cheerfulness, I feel…panic

Invariably, the responses to the question of what Broyard wants in a doctor are powerful, some revealing that his experience might reveal what some call the loss of the human touch in medicine.  “Not every patient can be saved,” he writes, “but his illness may be eased by the way the doctor responds to him”  (p. 57).

Several years ago, I posed the question “What do you want in a doctor?” to a group of cancer patients.  One woman wrote as if she was addressing her oncologist in a letter, describing her feelings about her most recent appointment with him.  She had been his patient for over a decade, but that day, he’d given her the news no one wants to hear.  Her cancer had metastasized and spread throughout her body.  Yet he had delivered this news without the warmth and compassion she had come to expect.

“I’ve been his patient for ten years,” she said, tears welling in her eyes. “We’ve developed a close relationship in all that time,  but he wouldn’t even look at me when he told me this news.”   The group members listened quietly, passing her tissues as she began weeping, and at the end of the session, many offering her hugs.  What no one expected, however, was see her return the following week, her face wreathed in smiles.   She told the group  she’d made an follow-up appointment with her doctor and mustered the courage to share the letter she’d written in the group describing the pain she felt in the manner he’d delivered what was, clearly, her death sentence.  What happened next, she said, was an apology and his honest admission that he was trying to control his own feelings, the immense sorrow he felt as he began conveying the results to her.  The hurt and distress she’d felt was eased.  She was calm and smiling as she shared their conversation with the group, reassured that despite having only a few months of life left, her doctor would be there with her until the end.

Even when cure is impossible, healing is not necessarily impossible.  While medical science has limits, hope does not.  I believe the maxim proposed by Dr. Edward Trudeau about a century ago:  “To cure sometimes, to relieve often, to comfort always.”  The miracles reside in the capacity for comforting and healing (Lown, p. 319).

About Dr. G.

He goes out of his way every time to ask how

I’m doing.  He is the tree whispering through

the cracked hospital window, the shiver of white

narcissus, the breeze lifting the skirt of the nurse

opening my door.  He is the song in my head that

doesn’t stop at night, the way curious medicine

wanders my blood–I no longer go out of my way to

picture the mound of earth dug just my size.

Sometimes someone touches your hand in an

unexpected room and you close your eyes

like the lid of a music box that’s been wanting

quiet for years. When I start to die, this is

how it will be:  no terrible music, no one taking

my place, his footsteps in silence carrying on.

By Ann E., (1955-2013)

poet & cancer patient

I have a different family physician now.  Quite unexpectedly, my daughter’s doctor’s practice opened up for a limited number of family members of her existing patients.  I made an appointment for a consultation, and during our conversation, experienced a sense of connection and trust I’d found so elusive with my former family doctor.  While I appreciated the warmth of this doctor, more importantly was the time she took to ask and answer my questions, listening attentively to what I had to say.   “Trust in a doctor,” Bernard Lown writes, “is also fostered by the thoroughness of history-taking, by questions about work and other social issues…by expressions of genuine solicitude for serious problems” (p. 330).  I left her office feeling a sense of relief and calm.   I’d found my new family doctor.

Writing Suggestions:

  • Try answering the question:  “What do I want in a doctor?”  Why are the things you want important to you?
  • If you have, as I have had, a doctor who inspires your trust and confidence in your care, what are the qualities or behaviors that contribute to your feelings about your doctor?
  • Write a narrative or poem about a doctor who has made a difference in your life.

January 8, 2019: Flourish: Living a Full Life with Heart Failure

i am running into a new year
and the old years blow back
like a wind …
it will be hard to let go
of what i said to myself
about myself
when i was sixteen and
twenty-six and thirty-six…

(From:  The Collected Poems of Lucille Clifton 1965-2010, Young & Miller, Eds., 2012)

I recalled “I am running into a new year,” the first line and title of Lucille Clifton’s poem,  as 2019 began, although “running” is not an entirely accurate description of how I’ve begun this New Year.  If I take account the reality of aging, of living with heart failure, I have to be honest.   I am actually limping into a new year, thanks to arthritis in my right knee, and, like it or not, a slower pace of life that comes with being a heart failure patient.   Nevertheless, I’ve begun the year with every good intention to make it as happy and healthy as I possibly can.

I greeted January 1st with a practice I’ve had for nearly ten years, considering what I want my life to be about in this New Year and how that is manifested in word, deed and action.  I began several days ahead of first exploring and choosing a single word to frame my intentions and act as a road sign for the year ahead.   With all that has happened in 2018, health-related words were top of mind.

After several hours of deliberation — a necessary process for me to find a guiding word that resonates with what I intend or hope for it in multiple ways–I finally settled on “flourish,” which, according to the dictionary, means, “to thrive, achieve success and prosper.”  Its etymological roots can be traced back to the early Latin word, “flor,” meaning to flower, although the first known use of “flourish” in the English language didn’t appear until the 14th century.  Flourish seemed an apt choice for framing how I want to guide my life and  health in the coming year.  I typed it out and, as I always do, placed it in a small 2-inch frame to sit on my desk as my daily reminder.

Choosing a word was only the first part.  Now I had to consider how “flourish” was going to translate to action, especially since I’m living with heart failure–and at a time when my daily intake of medications continues to increase, and I now record my blood pressure, heart rate and weight on a daily basis, sending it to the cardiac center with the push of a button on my iphone.

I couldn’t help but think of all the cancer patients who’ve written and shared their experiences with me.  Cancer mobilizes them to fight–it’s an invader, errant cells multiplying and growing, and they hope for a cure.  Where the heart is concerned, it is different, and as some authors have described, “the ultimate arbiter of our lives.  When it calls time, the game is overThe heart, “plain and simple, is a pump.”  (From the introduction: The Sublime Engine:  A Biography of the Human Heart, by S. Amidon & T. Amidon, 2012).  The thing is, this pump of mine is weakened and, gradually, wearing down.  It’s not fighting I want to do where the heart’s concerned.  Rather, I feel protective about my ailing heart, a sense of needing to treat it tenderly and gently, hovering over it like a mother at the bedside of her ill child.   I wrote the obvious question across the page of my notebook:  So how do I flourish living with heart failure?

Shakespeare’s “Shall I compare thee to a summer’s day?” came to mind–  an irrational thought, or so it seemed, but as I addressed my heart, I wrote,   “Shall I compare thee to an old car?”  I recalled my high school boyfriend’s old, well used, Ford Model A–a true jalopy.  It couldn’t do much more than get him from home to school, or provide the transportation for a date in our small town, its ancient engine “putt-putt-putting,” as he drove.  There was never any danger of a speeding ticket, although its age often cast doubts in our minds if the old jalopy would make it up a hill.   Yet my friend loved that old car, keeping it clean and shiny with polish, and together with his father, tinkering frequently with the engine to keep it running.

I suppose it’s not unlike the way in which I think about my heart.  Coupled with the care of my cardiologist, the medications I take daily, and my own efforts, I’m intent on keeping my aging engine going for as long as I possibly can.  It’s not perfect by any means.  But I’m intent on flourishing, walking as often as I can around the neighborhood, running errands on foot, carrying my necessary purchases on my back as I walk home.  I never forget about my heart.  How could I when, walking from uphill from our apartment to St. Clair Avenue, I have to pause at a corner, watching the lights turn red, green then red again, to quiet the thudding in my chest.  A momentary fear surfaces:  “Good grief, am I going to pass out here?”  Invariably, I recall the day I actually did pass out ten years ago while walking my dog.  But then the light turns green, and I resume my walk,  reminding myself to keep a slower pace.  I’ve become a “putt-putt” shadow of the long-legged, brisk striding, younger person I once was, when my husband would always complain, “Slow down”– but that was before heart failure and arthritis.  I can’t let the necessity to walk a bit slower keep me from doing something good for the heart.   Walking is one way  I can flourish.

Like it or not, flourishing also requires coming to terms with my aging body.  To wit:  I try to get to the pool a couple of times a week, but I’m no longer an energetic lap-swimmer I once was.  I lack the lung capacity I once had.   Now I carry a bright turquoise “noodle” into the pool to help keep me buoyant as I move back and forth in the water, legs bicycling,  arms doing a modified breast stroke.  I present a comical picture,  but flourishing also involves not taking myself too seriously.  I’m no beach blanket beauty, just an aging woman, less toned than I once was, trying to fend off my embarrassment as I try to exercise.  As the Nike ads once proclaimed, “Just do it.”

I also follow Nike’s dictum every  Friday, when I attend a weekly dance class with other women of indeterminate ages.  We’re  called “The Vintage Dancers.”  I think you get the idea.  Despite my arthritic knee and stiffer joints, I still like to try, because I love to dance.  I don’t have any illusions now:  one glance in the mirror dispels the memory of that former self, sleek in lavender spandex, quick to learn new routines.  Oh, I still wear spandex, common now in athletic garb, but the gracefulness and agility I once prided myself on has all but vanished.  I try to do my best to follow along with the fast pace my instructor establishes, whether it’s salsa, Bollywood, hip hop, or an Israeli folk dance, but I am no longer “fleet of foot or, it appears, able to remember all those new steps as easily as I once could. I end up laughing more often than getting through a complete routine.  Yet now and then, everything clicks, and I do a full routine correctly.  Then without thinking, I’m likely to raise my fist in the air and shout, “Woo Hoo!”  Clumsy or not, I dance because it’s joyous, fun, and above all, I love to laugh.  Movement helps, but laughter, I believe, is a necessary part of flourishing.

As for a heart healthy diet, I’m pretty good about watching salt intake, eating more servings of fish and plenty of fruits and vegetables, but I also enjoy an evening out with my husband, family or good friends.  I put caloric intake aside on those evenings, enjoy a glass of wine with the food and conversation, and the company of people I like.  Friends and family are important to my ability to flourish.  I recall the work of physician Dean Ornish, whose work I followed many years before I ever became a heart failure patient.  Ornish, founder of the Preventive Medicine Research Institute in California and a Clinical Professor of Medicine at University of California, San Francisco,  is best known for  his advocacy of diet and lifestyle changes in treating and preventing heart disease.  But importantly, Ornish  included social support as an important aspect of treating and preventing heart disease.  “The need for connection and community…affect the quality of our lives” he said, “but they also affect our survival to a much larger degree than most people realize” (quoted in Heart: A History, p. 237, by Sandeep Jauhaur, 2018).

As I listed these activities, I realized there are others also important to my ability to flourish,  like engagement in intellectual and social activities I care about:   writing, leading expressive writing groups for cancer patients or offering a patient perspective in heart failure care initiatives.  Flourishing is part of taking advantage of all this city has to offer:  music, art, theatre, walking trails, and the vibrancy of a multi-cultural environment.

After I’d enumerated the activities in my life that are important to for me to flourish in life, I returned to my heart, that “pump” I referred to  at the beginning of this post.  It’s no ordinary pump or engine.  The heart fascinates me.  It is the only organ that represents the qualities that make us most human and has inspired a multitude of  metaphors throughout history.  It is truly an uncommon pump.  It’s not only amazing, it gives us life.  Flourishing then, despite and yet because I live with heart failure, includes so much more than my diet, exercise and medications.  Flourishing is also about love, laughter, friends and the ability to find joy and gratitude in every day I live and breathe.

A Writing Suggestion

.  Have you chosen a guiding word for your life this year?  If so, try to flesh out all the ways in which your word translates into actions and intentions for living as fully and actively as you can.

.  Don’t have a word?  Why not try choosing one that captures what’s important in your life for 2019.