Fill your paper with the breathings of your heart. — William Wordsworth
The Beginning. One toe in the water as I have begun plumbing the depths of my experience as a person living with heart failure. It’s a journey I began, unwillingly and more or less privately, in 2008. I collapsed on the pavement while walking my dog, was rushed to emergency, admitted to observation for three days and subsequently, I was diagnosed with heart failure. An ICD was inserted in the same week, and out of the numbness I felt, I learned I was facing a condition that, if I looked too closely, forced me to consider mortality, facing my destiny, as novelist Alice Hoffman once said, “sooner rather than later.
It’s time I take a deep dive into what it means to live with heart failure. This blog is a start, and, I hope, one that will encourage others to reflect on and write about their experience of heart failure–beyond the shock of diagnosis, revealing the deeper experience–fears, questions, emotions, spirituality. It’s one of the reasons why, for the past twelve plus years, I’ve written a weekly blog, “writingthroughcancer.com (.ca)” aimed at those who live with cancer. The blog began as an outgrowth of the expressive writing groups I’ve led at multiple cancer centers and organizations since 2000 and the body of research on the healing aspects of expressive writing. I’d had an early stage brush with cancer at the time, but not serious or life threatening. It was only a few years later, in 2008, when I was first diagnosed with heart failure, that the fear of mortality sooner than I had imagined for myself, began to surface. In truth, I’ve buried those thoughts and fears more than I’ve acknowledged them. I am ready now to take my own deep dive into what it means, for me, to be a heart failure patient.
How did it happen? In the past several weeks, I was called into action to offer a patient’s perspective on the heart failure journey in Canada. I’ve found it challenging, less because I’m a recent returnee to the Canadian healthcare system after several years of working and living in California, and more because it forces me to examine my condition and research, stirring up many mixed emotions, thoughts, curiosities and questions. Ironically, I’ve begun to realize that it has also begun to make this journey of heart failure a little less lonely.
What I hope for this site is twofold: one, I do my own work of reflecting and writing about this condition, which I’ve discovered more women die from annually than from breast cancer, and has been recognized as a national public health priority in Canada. Shortly after being invited to participate as the patient representative in another committee of cardiologists and healthcare professionals working on an optimal model for Heart Failure care in Canada, I was plunged into reading and reflecting on the differences I’ve experienced in patient support of those living with cancer vs. those, like me, living with heart failure. Those initial reflections became the July 30th post for my e “www.writingthroughcancer” blog site. Entitled “Transitions: Matters of the Heart,” I’ve posted it here as a prelude to what, I hope, will be an honest examination of this patient’s experience of heart failure and I hope, inspire other heart failure patients to express their own reflections, questions and illness narratives, whether personal essay, narrative or poetry–that captures the journey through heart failure. Unlike the dozens of memoirs, poetry and essays written by cancer survivors, I’ve been hard put to find comparable writing in the heart failure or heart disease community. I hope that my voice will be joined by others, writing from the lived experience of living with heart failure.
If you’ve stumbled on this new blog site, thank you for reading. A feature of each post, likely bi-weekly or monthly, will be to include questions or suggestions for your writing. I invite comments and from time to time, submissions from other heart failure patients who are exploring what it means to live with heart failure. Thank you for reading, and please encourage other heart failure patients who may be interested to join me in writing from the experience of a condition that has no cure.
Thank you. Sharon Bray.
How it began–my first post from July 30, 2018: Transitions: Matters of the Heart
Earlier this morning I participated in a conference call with a group of medical professionals in the Canadian Heart Failure community, a group tasked with creating a joint paper on Heart Failure care guidelines in Canada. I was invited to represent a patient perspective, but admittedly, I was taking copious notes in a conversation that, like most specialties, has its own lingo–acronyms and terms unique to the field but for me, akin to a foreign language. At the conclusion of the call, the group was divided into sub-groups, each tasked with writing and submitting questions to be included in a national survey on heart failure treatment, care and transitions. I was assigned to explore and formulate questions dealing with transitions for heart failure patients.
Ironically, just last week, I’d been part of a survivors’ retreat, “Transitions,” at Gilda’s Club here in Toronto, where I led a writing workshop on the process of transitioning from patient to “survivor.” After this morning’s call ended today, however, I wondered how “transition,” in heart failure terms, differed from the way in which it was used in our workshop last week.
At the retreat, we used it synonymously with becoming a cancer survivor–someone who has been, if not cured, given a number of years of being “in remission.” We all, of course, still hope for a cure for cancer, and new immunotherapies have given us more hope one will be found. Yet heart failure, by contrast, is a condition that isn’t cured by drugs, rather they are used to improve heart functioning for as long as possible. Inevitably, the prognosis for heart failure patients has the upper hand, and the heart continues to weaken. As I was assigned to explore questions for the category of “transitions” in a proposed model for heart failure care in Canada, I couldn’t help but think about the different implications what “transitions” between the way we’d used it a week ago at Gilda’s club and how, in this new effort to define a model of care for heart failure, a somewhat different meaning is implied.
Heart Failure, which I have, is a growing — and all too silent — epidemic according to Dr. Paul Fedak, a cardiac surgeon at the University of Calgary. He explains: “Heart failure is the end result of all cardiac disease. You get heart failure from everything that goes wrong with your heart–all roads lead to heart failure.” While cancer remains the leading cause of death in Canada, heart disease is the leading cause of premature death for women. In the US, heart disease is the leading cause of death for both men and women with cancer running a close second. Yet I cannot help but consider the number and variety of support programs for cancer patients that are far more developed, available and varied in both countries. than resources for heart disease patients.
I’ve been part of the cancer community for nearly twenty years, and gratefully so. When asked to introduce myself on this morning’s call, I said that I was someone whose practice has been focused on individuals living with cancer by supporting their emotional, spiritual and creative well-being through encouraging the writing and sharing of their illness stories. The thing is that the prevalence of a variety of supportive care programs, such as we have in the cancer community, are scant by comparison in the heart failure community, although there are some recent efforts, like the HeartLife Foundation of Canada, working to provide information and resources as well as create a sense of community through social media.
I have come to realize now that my work with cancer patients and survivors has been my greatest teacher in understanding the impact of serious or terminal illness on our lives. My personal experience with cancer was not a life threatening one. But the negative side effect of my treatment didn’t make itself known until my diagnosis of heart failure eight years later. It wasn’t until that incident, perhaps, that I understood how the fear of premature mortality that can inhabit anyone’s mind who is diagnosed with cancer. Heart disease and stroke kill seven times as many women as breast cancer, for example, and in Canada, a woman dies of heart disease in Canada every 20 minutes! According to the Canadian Heart and Stroke Foundation, women are five times more likely to die from heart disease than breast cancer. But it turns out that there are issues in research and treatment of heart disease and failure when it comes to gender. Two-thirds of heart disease clinical research still focuses on men. “Women are under-researched, un-diagnosed and under-treated, undersupported and under aware,” according to Yves Savoie, CEO. “It’s unacceptable, and the situation has got to change–we need to smash this glass ceiling.”
Ironically, my cardiologist believes my heart failure was likely the result of radiation therapy I received for DCIS in my left breast eighteen years ago. I was given “gold standard treatment,” as my oncologist described it, yet I didn’t feel like I was truly a cancer patient. And I wasn’t, not really, because a short time later, DCIS was reclassified to “pre-cancerous,” so it was only after I collapsed while walking my dog in December of 2008 and was diagnosed with heart failure, that I truly understood the words of Alice Hoffman, novelist, reflecting on her cancer experience:
“Cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. 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.” (“Writers on Writing, “New York Times, August 2000).
Cancer treatments have gotten progressively more refined and better, and now with new advances in immunotherapy, there is even more reason to have hope for a cure. Heart failure treatment continues to improve as well, although it isn’t about cure as much as it is in medication that can help to improve, for as long as possible, the heart’s functioning, but the slope is still gradually downhill, and one’s “destiny” is never far from consciousness.
What strikes me now, as I continue to go to my cardiology appointments, have tests, receive new or increased medications and talk with my cardiologist (who is truly exceptional) is how solitary a journey having heart failure has felt like to me when I consider the supportive care and community organized around individuals living with cancer.
Or have I been in denial? Perhaps, to some extent, but for the seven plus years I was being treated for this condition in California, other than one “educational” workshop on heart failure, which failed to do much to enlighten me, I never encountered or was told about other programs supportive to heart failure patients. While I read research studies on heart failure, I do it in small doses, because my sleep is woefully interrupted by the facts and statistics. Yet I am gratified to be pulled into action concerning the condition I and so many others have, or as my cardiologist would call it, “engagement.” In fact, at my very first appointment with her back in December of 2017, she asked, “Do you want to just be retired or do you want to be engaged?”
I was perfectly clear. “Engaged,” I said. “I have no idea what just being retired would look like.”
“Well, we’re going to get you engaged,” she said emphatically.
And she did. Four months later, I sat in a group meeting on Heart Failure Access in Canada, all the while wondering how on earth I could possibly contribute to the discussion in any meaningful way. Yet perhaps now I’m realizing I can be helpful in offering a patient perspective as the committee works to define an optimal model for Heart Failure Care in Canada. And that has a lot to do with the past 18 or so years of facilitating expressive writing groups for men and women with cancer. A vocation, I’ve said, that has always been dear to my heart…little did I realize how much.
Perhaps all that I have learned, cherished and experienced as part of the cancer community, and most of all, from the honesty and vulnerability of those who have come to write and share their stories and lives with me in the writing groups, will help be me a better patient and participant in this community of cardiologists, nurses and heart failure patients.
And perhaps I won’t feel, as I have in the past, as lonely in the journey of being a woman living with heart failure.
My outlook is it’s not how long you live, it’s what you put into your life.—Simon Morgan, 58, ( dilated cardiomyopathy; heart transplant patient, UK)
- Cancer or any serious illness can be a great teacher. What have you learned from cancer or other major hardship?
- In your cancer experience, think about the kinds of support and help you were given. What was most helpful? Describe it and explore why you found it as valuable as you did.
- Think about transitions–the many times in your life you’ve experienced that “in-between” period during change from one part of your life to another. What meaning does “transitions” imply for you? Why?