(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?
- Two Prompts Get You Started:
- The moment when…Think 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)
- 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.
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