Perhaps it has something to do with the season–the holidays and the year drawing to a close have a predictable impact on my thoughts and mood. There are memories of holidays past, of people and places I’ve loved, of family who are no longer in my life, and with them, feelings of nostalgia. It’s a season of “good cheer,” but I’m aware that “what was” coupled with the reality of “what now is,” has dampened my holiday spirit.
Now. These past few months have been more stressful than in years past, the result of my husband’s unexpected diagnosis and surgery for kidney cancer, his ongoing indecision about participating in a clinical trial for a new drug, and my ongoing life as a heart failure patient, with not only an increased number of doctor visits, tests and new medications, but to be honest, the willingness to be “engaged” in the larger issues of heart failure care and treatment, locally, provincially and nationally. Heart failure, it seems, is a frequent companion in my days.
Two weeks ago, during my regular appointment with my cardiologist, I stood in the examination room, still recovering from an acute bout of sciatica and unable to sit comfortably. I’d come prepared, a list of questions lying next to my handbag, the result of reviewing of my most recent blood tests and finding several of them labeled “abnormal.” One in particular, my B-type natriuretic peptides (BNPs) had me concerned, and I needed to know what it meant.
Obviously, I don’t have the training to interpret these tests or fully understand them, but my worry over BNP levels was triggered last spring, when, new to the Canadian heart failure community, I was invited by my cardiologist to attend the Canadian Heart Failure Society’s Heart Failure Update 2018 in Toronto, and asked by another to give a short patient story in her research session. I had arrived earlier than planned and tiptoed into a morning symposium, already in progress, where a research study on the relationship between BNPs and patient prognosis was being discussed. For high BNP levels I heard, the prognosis wasn’t good. Since mine were, I knew, elevated, I immediately thought, “I don’t need to hear this right now,” and quietly tiptoed out of the hall to review my notes for my talk, unwittingly leaving a trail of 3 x 5 cards from my seat to the door, which I discovered only when I finally sat and opened up my folder and found them missing. (As it turned out, I didn’t give the talk. Just as I’d introduced myself, a heart failure patient, seated at the back of the room, collapsed, and the research session ended abruptly). I walked to the subway station feeling utterly depleted and thinking, “This probably isn’t the best way for me to be engaged in the heart failure community.”
But back to my most recent appointment: my cardiologist listened attentively as I posed my question on my blood test’ results and BNP levels before explaining to me how different medication affects different blood tests and so on. I felt my eyes tearing up as I thanked her, apologetically saying, “A little research in my hands isn’t necessarily good.” She nodded, adding that they had yet to study the impact of patients’ reading and studying heart failure research.
“It’s hard sometimes,” I acknowledged.
“Have you written about it?” She asked.
“I’m trying,” I said, willing myself not to cry, “But I’m finding that to write from the personal experience of living with heart failure is far more challenging than I anticipated.
She nodded, then stood stepped toward me, saying, “I’m going to disturb your personal space and give you a hug.”
I needed that hug. “Thank you,” I mumbled tearfully, embarrassed my emotions were so close to the surface. I thought later about an 2011 Ted Talk, “Honoring the Stories of Illness” with Dr. Rita Charon, and how she described that by listening deeply to her patients’ stories, she “could stand with [them] in the glare of…fear.” In that moment, I’d felt truly heard and understood by my doctor.
But it got me to thinking. Despite my initial hesitation, I’ve continued to become engaged in three different initiatives to offer the patient’s perspective on heart failure care. I much prefer engagement to inaction, but what I didn’t anticipate at the time, is the impact this engagement can have on my emotions. I read to prepare for the meetings; I read the research to help formulate survey questions for a collaborative paper on heart failure care; I scan the research again after every new test or medication. And daily, thanks to technology, I record my weight, blood pressure, heart rate, symptoms and send them in to my cardiac care team via my iphone. I have realized that all of it combined takes a toll on my mood, bringing up those shadowy elements of fear, mortality, and resulting in a much more somber, somewhat depressed me.
And yet… I’m fascinated. But it’s not the research that inspires me, not the workings of the physical organ I seek to understand, but rather, that second heart, the one some have called the “metaphorical heart,” the symbolic center of emotions and the “home of the soul, seat of love, place of wisdom and justice, and the symbol of our vitality.” (Stone, In the Country of Hearts, 1990; Carter, Our Human Hearts, 2006).
So this past week, I finally turned away from the scientific to recalibrate and clarify my reasons for exploring my “lived” experience of heart failure in this blog. I began by rereading the beautiful and humbling book by Paul Kalanithi, When Breath Becomes Air (2016), whose young life and career as a neurosurgeon were cut short by lung cancer. Kalanithi obtained masters’ degrees in philosophy and literature before returning to Yale to become a neurosurgeon, and thus, his perspective, the way in which he sought to understand his patients’ lives and his own life and death, were enriched, perhaps, by a broader perspective that medical training alone. He wrote, “Like my patients, I had to face mortality to understand what made my life worth living… What makes human life meaningful? I still feel literature provided the best account of the life of the mind, while neuroscience laid down the most elegant rules of the brain…and so it was literature that brought me back to life during this time… “
His words resonated with me. It is in literature–poetry and essay, memoir and fiction–that I find meaning in the deeper issues of life–and death. It’s literature that offers me inspiration, a new perspective, words that express what I am experiencing better than I can say it myself. Even today, in finally being able to write, however clumsily, about what these past two or three weeks have held–the doubts, fears, and questions, the searching and reading to try to make sense of it all–that is the way in which I continue to find the meaning, inspiration and words to express what I am feeling, what it is like to live a heart failure patient.
I feel lighter now as I complete this entry. Revived. “If I only had a heart,” the Tin man said in The Wizard of Oz… Well, I have one, damaged and wearing down, but it still keeps me going, and more, my “second” heart captivates me. I am, as Gail Godwin describes in her book, Heart (2010), fully enrolled “in the school of the heart.” I doubt I will tire of this education anytime soon.
For Reflection and Inspiration:
Carter, Albert Howard. Our Human Hearts: A Medical and Cultural Journey, 2006.
Godwin, Gail. Heart. A Personal Journey Through Its Myths and Meanings, 2001.
Kalanithi, Paul. When Breath Becomes Air, 2016
Stone, John. In the Country of Hearts, 1990.