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Archive for the ‘heart disease’ Category

The heart remembers everything it loved and gave away,
everything it lost and found again, and everyone
it loved, the heart cannot forget.  (Joyce Sutphen, from:”What the Heart Cannot Forget”)

As someone who experienced breast cancer and now lives with heart failure,  I am more aware of the physical life of my heart than ever before.  Every morning I check my blood pressure, heart rate and weight, entering the information in “Medley,” the app on my iphone developed by the team at Peter Munk Cardiac Center.  I am grateful for Medley; it keeps me attentive and more aware of heart health.  However, before my heart failure diagnosis, matters of the heart were predominantly emotional and poetic.  And even yet, those metaphors and associations are the more frequent way I describe what I’m feeling.  Think about it:  how many times do we refer to our hearts when we’re describing emotions?  Consider a few like “my heart is filled with joy; heavy with sorrow; a broken heart; a heart full of love…

The heart is a long-standing and dominant aspect of poetry and prose across cultures and most often used to describe human emotion.  Author Gail Godwin, writing the prologue to her book, Heart, quotes a number of heart references, for example:  Yeats: “the rag and bone shop of the heart,” St. Francis:  “a transformed and undefended heart,” Tony Bennett crooning, “I left my heart in San Francisco,” Jesus Christ: “Blessed are the pure in heart,” and Saul Bellow’s comment, “More die of heartbreak than radiation,” among others.  I think of the Tin Man in The Wizard of Oz:  “If I only had a heart…”

Well, I have a heart, and it’s still beating, with a little help from an ICD and a regimen of daily medications.  What’s more, I continue to refer memories and emotions that, as e.e. cummings described, I “carry in my heart.”  It’s no surprise, then, that one of the writing exercises I use in the expressive writing groups I lead for cancer patients is inspired by the heart; the heart, as Joyce Sutphen describes, “that cannot forget.”

Begin with a large image of a heart.  You can draw a large valentine-shaped heart or, as I prefer to do in the workshops, use an image of the human heart.  The task is to answer, in three separate steps, the larger question, “what do you carry in your heart?” Take the image and next to it or on it, write your responses to these three questions, giving a few minutes to write between each.

  1. What people, living or dead, do you carry in your heart?
  2. What places do you carry in your heart?
  3. What events or happenings in your life do you carry in your heart?

Simply list as many names or labels as you can for each question.  Once you’ve answered all three, take some time to read what you’ve written on your heart.  Now, choose one thing–person, place or event–that seems to hold the most pull or power for you.  Take a clean sheet of paper and for 15 – 20 minutes, begin writing about that person, place or event–whether a narrative or a poem or just free association, it doesn’t matter.  Keep writing for the allotted time.  Do not stop to edit or re-read until the time is up.

The stories that are written in  this exercise are often emotional, yes, but they are also more “alive,” descriptive and engaging, coming “straight from the heart.”  Even the most reluctant writer, the one who says, “but I’m not a writer,” will surprise herself with the writing that emerges from the heart exercise.

If you are one who would like to write but doesn’t know how to begin, this exercise can be a great way to get started and a way to begin to capture the stories of your life.  Writing about what matters, what has shaped and defined you, is also a way of release, often a way to express difficult events and emotions that are sometimes bad for your health.  Everyone has stories to tell.  As I often say to those who’ve attend my cancer writing groups, often shy about writing, “if you don’t tell your story, who will?”

…I have learned that story assuages grief, and it also grants the chaos of our emotions some shape and order…Even as I watch my mother become more and more distant from the lives around her…I am doing what I have been preparing all my life to do:  listening again to the old stories and committing them to memory in order to preserve them.  I am still doing my work in terms of what I have come to believe defines immortality.  Being remembered.  (From:  The Cruel Country, by Judith Ortiz Cofer, 2015.)

I’ve had a few medical experiences in my life, just as you have–near death, neurosurgery, breast cancer–and now I live with heart failure. Sooner or later, we “get” that we are not immortal. My cancer experience was so very treatable, compared to those who come to my groups, and yet, I think whether you live with  cancer or with a heart condition or other serious illness, it makes you more aware of what matters most in your life.  As Judith Cofer described, I am aware that the stories of our lives, the places, events and people who were helped to define and shape who I have become is the legacy I have to pass on to my daughters and grandchildren.  To remember.  To be remembered.   “Death, as Jim Harrison wrote in his poem, “Larson’s Bull,” steals everything but our stories.”

I am the only one who can tell my stories and say what they mean.  (Dorothy Allison, in Two or Three Things I Know for Sure.)

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She is alive.  Although her doctors said

there was nothing to be done, she is home,

planting her summer garden, is not dead,

and plans to eat everything she has grown…

She will live

beyond the harvest and what will not grow

is her tumor…

this is her time

to cultivate and seed.  She is alive.

(From:  “Seed,” by Floyd Skloot, in The Cancer Poetry Project, 2001)

You’ve finished your treatment.  The doctor’s words are something like “cancer free” or “no evidence of disease.”  You’ve beaten the odds.  You’re a survivor.  You celebrate.  But little by little, you find you’re riding on an emotional roller coaster some days, and you can’t seem to get yourself going and doing all you promised you’d do if you survived cancer.  “Why,” you ask a friend or a partner, “do I feel so bad?”

The good news about cancer, according to a 2011 article by Ann McDonald appearing in Harvard Health, is that “nearly 12 million Americans—4% of the population—are still alive after a cancer diagnosis.  While that’s encouraging news and “a testament to improved diagnosis and treatment…survivorship comes at a psychological price.”

McDonald describes three major and common reactions to survivorship:  1)  becoming emotionally paralyzed by the specter of cancer and unable to re-engage with normal life activities, 2) fears of recurrence, when follow-up medical visits and tests or unexplained pain or other symptoms produce worry and anxiety, and 3) feeling guilty when other friends or acquaintances have not survived.  It’s no wonder really.  As Alice Hoffman, novelist and cancer survivor, described it,

These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.– NYT Times, August 2000.

Yet, what other choice to do you have but to learn how to survive the crises life sometimes presents to you, whether cancer or some other hardship?   When you are undergoing treatment, surgeries and chemotherapy, the prospect of survival dominates your life.  You want to be a survivor, one, as the Oxford American Dictionary defines as “a person remaining alive after an event in which others have died,” such as those 9/11 survivors or those who survived the sinking of the Titanic.  It is also a term the Oxford defines as “a person who copes well with difficulties in… life,” something that seems virtually synonymous with being human.

What ignites your will to survive and helps you cope and keep going?  It’s different for all of us and yet, so much the same.  Hope is surely one of those things that keeps us going.  The support and love of friends and loved ones are also important to our will to survive–even, at times, those who have yet to be born.

A., a beloved writing group member who died from metastatic breast cancer, demonstrated extraordinary determination to live fully for as long as she could, filling her days with family, friends, travel, and joy. Her oldest daughter was pregnant, and she was determined to survive to be present for her first grandchild’s birth, even though the odds were very much against her.  She died a month after he was born, but she lived to be present at his birth and hold him in her arms for the short time she had left.  I have no doubt that his impending arrival strengthened her will to live and experience the joy of his arrival.

J., another of my former writers, given a terminal diagnosis of acute lymphoblastic leukemia, evidenced a strong will to survive from the moment I met him.  Not surprisingly, he underwent a bone marrow transplant and intent on living as long as he possibly could, lived for another  five years before dying.  He engaged fully with living during that time, and he wrote poignantly, humorously, and honestly about his cancer struggle in the group and later, on his personal blog. Shortly before he died, he sent me a copy of an essay, entitled “What I’ve Learned,” summarizing the lessons of  his cancer experience.  Among the many bits of wisdom he expressed, he reminded us all that survival, no matter how brief or lengthy, is about living fully, for as long as we have.  Among  J.’s survival tips were:

  • Work at what you love…
  • Travel light.
  • Do what the doctors tell you.
  • Offer support when you can and it will come back to you when you need it.·
  • Cherish the ones you cherish.
  • In the end, all your physical beauty and prowess will leave you. You must still love that person in the mirror
  • We all will die eventually, so find a way to face death without fear. Don’t dwell on death, but enjoy each day as best you can.

He gave us good advice, because in life, we are all survivors of something.  Life is sometimes challenging, and you may face tough chapters to navigate through. Surviving–and surviving well– is something we all have to learn–and relearn–multiple times in our lives.  As your life continues to change, another challenge or difficulty can make you feel uncertain, clumsy or tentative.  But surviving isn’t about giving up.  It requires you learn new ways of being–and that is not always easy or pleasant.

Whether cancer, the effects of aging, unexpected life transitions, from time to time you have to remind yourselves that you’ve  proven, again and again, that you can adjust and move on.  As your life continues to change–in subtle and not so subtle ways–you learn the new movements, necessary strategies and behaviors.  Even better, you may learn how to move beyond “just” surviving and rather, fully embracing the life before you–changed and different perhaps, but yours.  After all, it is the only life you have, and you need to care for it.

…and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,

determined to do
the only thing you could do–
determined to save
the only life you could save. 

(From:  “The Journey,” by Mary Oliver, in Dreamwork, 1986)

Writing Suggestions:

  • How do you think of or define “survival?”
  • As a cancer survivor, what advice would you offer others newly diagnosed?
  • Describe a different time, cancer excluded, when life knocked you down.  What got you back on your feet?  What helped you survive?
  • After you were designated “cancer-free,” did you experience any difficulty in learning to live fully again?  What helped you re-engage?

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