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?

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