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Archive for the ‘heart failure’ Category

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

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

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

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

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

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

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

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

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

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

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

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

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

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

–Patrice Vecchione, Writing and the Spiritual Life

Writing Suggestions:

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

 

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i am running into a new year
and the old years blow back
like a wind
that i catch in my hair
like strong fingers like
all my old promises and
it will be hard to let go
of what i said to myself
about myself
when i was sixteen and
twenty-six and thirty-six

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

“I am running into a new year,” the first line of a Lucille Clifton poem, came to mind early this morning as I greeted the first day of January, 2019–although “running” is not entirely accurate.  Rather, if I am honest about the vagaries of aging, I am sometimes limping into a new year, depending on the aches and pains of a knee now showing the effects of damage done in my more youthful, reckless years.  Nevertheless, I’m moving forward into a new year with every good intention to make it as happy and healthy as I possibly can.

This past year had, as I’ve written in earlier posts, more than a few health challenges, not just for me, but  my husband as well.  I live with heart failure, diagnosed in 2008, likely from damage to the heart muscle during radiation treatments I had nearly twenty years ago.  It is a condition that slowly, but steadily, tends to worsen.  I’m doing relatively well, thanks to medication and the care of an extraordinary cardiologist and her team, but frankly, sometimes that little shadow of fear awakens and trails after me late in the night.

My husband, who has been extraordinarily healthy throughout his life, was diagnosed, quite unexpectedly, with stage 3 kidney cancer in the fall and subsequently had the cancerous kidney removed.  Again, discussions of mortality, interspersed with disbelief, occupied our conversations and thoughts…”what if…?”  Happily, he’s recovered very well, and will, we hope, be granted several more years of healthy living.  Nonetheless, these are the events in our lives that can temporarily bring us to our knees, reminding us of life’s fragility and more, the awareness that we are both growing older, our bodies showing signs of age, and acknowledging we will not live forever.  It’s humbling, and yet, this is life, being human.  No one is immune to its ups and downs,  heartache, illnesses, losses and tragedies that sometimes bring us to our knees, and remind us of our mortality.

Now it is the first day of another year, and for the past few days, I have been writing about and exploring the intentions I have for myself during 2019–how I want to navigate this new year in word, deed and actions.  As I have done for the past many years, I choose a single word to frame my intentions for navigating another year, writing it out, framing it and placing it on my desk as a constant reminder of how I want to live, the actions I want to take.  With all that has happened in the past several months, health-related words have been top of mind.

I began the familiar process, brainstorming words for two or three days and narrowing the possibilities, settling on a shortened list of options.  I then consulted the internet for additional definitions and anything related to the exercise of choosing guiding words or intentions for one’s life.  That’s when I got derailed for a short time, discovering that my practice of choosing one word to frame each new year was now called the “guiding” or “one word movement.”  Huh?  I’ve been part of some movements in my lifetime, like civil rights, anti-war, or women’s rights.  But the act of finding a single word that captured my intentions for the coming year did not seem to be something I’d think of as a “movement.”  Not only that, but I found that there are workshops, coaching and commercial publications offered for this very act of finding one’s guiding word for a new year!  Ack!  I put my words lists aside for a day or two to try to regain a sense of the meaning this practice as for me.

Once I resumed my search and settled on a word which, when I told my husband what it was, he remarked, “that’s a good one.”  The word?  “Flourish.”

To flourish, according to the dictionary, is to thrive, achieve success and prosper.  It’s also associated with luxuriant growth or a sudden burst of activity.  One can trace its etymological roots to early Latin, “flor,” meaning to flower although the first known use of the word “flourish” in the English language didn’t appear until the 14th century.  Flourish, I decided, is an apt word in which to frame the intent for how I want to guide my life–and my health–in the coming year.

So I turned again to scouring the internet for uses of “flourish,” finding a recent definition from popular psychology that seemed consistent with the intentions underlying my choice of it as a guiding word for 2019:

To flourish is to find fulfillment in our lives, accomplishing meaningful and worthwhile tasks, and connecting with others at a deeper level—in essence, living the “good life” (Martin Seligman,PhD, 2011).

Seligman’s definition led me to the site, sub-titled “Your one stop positive psychology resource! ”  I remembered my husband had taken a course of Dr. Seligman’s.  I kept reading, discovering that he is now referred to as “the founding father  of flourishing,” due to his development of the Positive Psychology model and what flourishing includes, i.e.,  “positive emotions, engagement, relationships, meaning and accomplishments.”

But Seligman’s definitions aside,  I had another brief “WHAT?” moment and complained to my husband that not only had “flourish” been around for several centuries, but in this era of instant communication and social media, everything, even vocabulary definitions seemed to be reduced to fads, commercialism, and pop culture.  My husband, also a psychologist, countered my objections, told me again how inspired he’d been with Seligman’s course, positive psychology and more, that Seligman was a great teacher.

“I know, I know,” I sighed.  But Seligman’s definitions of flourishing was clouding my sense of meaning.  I stopped and put my word choice and musings on it aside for another day so that I could articulate and reclaim the meaning “flourish” signified for my life.   I found a favorite poem, a reminder, from William Stafford that helped:

There’s a thread you follow. It goes among
things that change. But it doesn’t change.
People wonder about what you are pursuing.
You have to explain about the thread.
But it is hard for others to see.
While you hold it you can’t get lost.
Tragedies happen; people get hurt
or die; and you suffer and get old.
Nothing you do can stop time’s unfolding.
You don’t ever let go of the thread.

(“The Way It Is,” By William Stafford, From: The Way It Is, 1998)

I returned to my contemplation, knowing I had to follow the thread of what I was exploring when I chose “flourish” as my guiding word for this year.  It is sometimes difficult to silence the voices of others, but it’s important to  struggle with and clarify what any word or set of definitions means in a way that honors our experience.  I spent yesterday writing about the meaning of “flourish” once again.

Flourishing, for me, is about living fully, not being weighed down emotionally and, to the extent I am actually able, physically.  It’s about being present to each day, the moments of simple beauty, kindness, and good in others.  It signifies finding new things to try or discover, time for play and fun with my grandchildren or my husband.  It is about staying active, whether I feel lead- footed in my dance class or not, whether I walk less briskly than I once did or not, or whether I wake up with stiff joints in the morning.  Flourishing is about renewed spirit, living with gratitude, and yes, a positive outlook.   To flourish means, for me, to be alive, truly alive, and participate in living to the fullest extent I can for as long as I can.

Today I’ll look for an image that is a metaphor for flourishing, print it out and place it with the word, “flourish,” written beneath it in the little frame reserved for my annual guiding words.  A constant reminder, this single word, which I claim as my guiding word, the one that will help to keep me on track with my intentions for living in 2019.

Perhaps you also have a guiding word or a list of intentions you wish to live this new year by.  Whatever you wish and intend for yourself and your life, I wish you a new year filled with new possibilities, discoveries, healing and hope.

Happy New Year.

Writing Suggestions:

Where can you find your inspiration for the coming year?

  • Start anywhere, with a single word, an image, a line from a favorite poem.
  • Try making a mind map, a brainstorming list, letting each word or association take you into new territory.
  • Alternatively, simply set the timer for five minutes; open your notebook and exploring all you want this New Year to be about.  You can even begin with “I don’t know where to begin, but…” and keep going, wherever those first words lead you.

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