And the body, what about the body? –Jane Kenyon
“Would you be willing to write a short piece for the patient website?” It was a request sent in a short email from Samantha, who does much of the behind-the-scenes coordination and publicity for “Writing the Heart,” the expressive writing workshop I lead through Ted Rogers Center for Heart Research. I didn’t hesitate and said, “yes,” and agreed to brainstorm possibilities together in a short virtual meeting two days ago. What I didn’t expect was to find tears running down my face as we explored possibilities. The topic I suggested as we chatted was, as it became apparent (no pun intended…) close to my heart.
In my cancer writing groups, I often invite the participants to explore their feelings about their bodies, before and after a cancer diagnosis. Cancer patients often feel betrayed by their bodies—and at the same time, they are more apt to define cancer as an invader, a foreign aggressor. The metaphors they use often include a sense of fighting back, overcoming the invading cancer cells. Bodies are altered; body parts sometimes lost or scarred by the disease or treatment. Yet cancer research and treatments continue to advance, and there is, for the majority of those I’ve experienced, hope for a cure.
By contrast, the heart is our life-giving pump, not an invader, and while advances have been made in heart transplant and medications for heart patients, heart failure is not curable. It is progressive, and the medications I take twice daily are those that help aspects of heart functioning so that I might “keep going a little longer.” The irony for me is that in all likelihood, as my cardiologist suspects, my cancer treatment twenty-one years ago, specifically, the radiation to my left breast, is likely the culprit in my diagnosis of heart failure.
Since my diagnosis of heart failure in 2008, I have, in comparison to so many people similarly diagnosed, been doing relatively well, and given the privilege to encourage and hear cancer and heart patients’ stories as I do in our writing groups, I am humbled: my own experience seems relatively lightweight. More than a few times, I’ve said to my husband that in comparison to other heart failure patients, I am very lucky. So when I suggested to Samantha I could write a piece on coming to terms with an altered self-image due to heart failure, I was surprised to find my eyes teared up quite unexpectedly.
And while I do feel “lucky” in many ways, it also masks the emotional impact of living with heart failure I’ve experienced, a progressive condition that, thus far, has no cure. I was first diagnosed in late 2008 after collapsing on the sidewalk while I was walking my dog, rushed to emergency, hospitalized for three days of tests and observation, undergone an angiogram and, without much discussion or explanation, while I was still regaining consciousness after the angiogram, asked if I “wanted” an ICD. Unsure if an ICD was warranted, I reluctantly agreed when the cardiologist said, “think of it as insurance,” and after it was inserted, then spent another three nights in the hospital. I spent the days dazed and feeling as if I was living in a strange dream. The only heart failure patient I had ever met was a 90-year-old neighbor.
For the first months after the entire episode, I settled back into a life that was relatively unchanged. Other than the bulge on the left side of my chest, nothing seemed very different as far as my daily life was concerned. I had regular cardiac visits, but they were little more than a 15-minute conversation and the assurance, “You’re doing fine.” My ICD checkups came every six months—and once I’d struggled to understand the technological explanations by the ICD specialist, assured “everything was fine.” I felt like my ICD got more attention than I did in my hospital visits! What wasn’t at all clear to me is that my heart failure was progressing, and it wasn’t until we’d returned to Toronto, and I became a patient at the Peter Munk Cardiac Centre, that I began to understand the impact heart failure would continue to have on my life.
Within the first year back in Toronto, I noticed I was a little shorter of breath than usual. As the year progressed, I began having more and more difficulty climbing the stairs—something I blamed on a case of Achilles tendonitis. The tendonitis is long gone, but stairs have now become even more of a challenge. When we relocated to our current building, one with elevators, then I noticed that walking uphill on Yonge Street was becoming more difficult than it once was, gradually, forcing me to pause multiple times to regain my breath when I ran errands on foot. While my husband and still I walk together from time to time, it’s me who asks, “Can we go a bit slower please?” unlike a few years ago, when he would complain about my brisk pace.
The deceptive thing about heart failure is that I don’t look different. Oh sure, I’m older, like all my friends, and one’s body shows those signs in little, but persistent ways: graying hair, more lines in the face, declining muscle tone, stiffening joints–the complaints common to advancing years. But I look normal. My ICD is beneath skin and clothing: there are no visible markers as there often are with cancer patients that tell people “She’s a heart failure patient.” And unlike in cancer, there is no “hope for a cure” among heart failure patients, just the increasing number of medications, to “help you last a bit longer.” Don’t get me wrong: I am very grateful for those medications and for the exceptional medical care I get at Peter Munk, but I am much more aware of living with heart failure —and the insidious way in which doing so sneaks up on me, sometimes triggering the blues.
The impact of living with heart failure is to challenge the very me I always believed I was. My body’s betrayal has forced me to re-evaluate the image I have always had of myself—that active, healthy, fast-moving, multi-tasking self. Mortality then seemed a long way off. Now I realize that my heart might be concocting other ideas about my longevity. Yet admitting all this is something I rarely do, and when I opened up about it to the TRCHR team members in our meeting, I was embarrassed and surprised to find tears streaming down my face. Obviously, I’d hit on a topic I felt strongly about—more than I was previously willing to admit. …Looks like I’ve got some writing to do.
This long struggle to be a home
In the body, this difficult friendship.
From “Cages,” in Collected Poems, 2005, by Jane Kenyon
- Has a debilitating illness or progressive medical condition changed your life? In what ways? Write about its challenges to your self-image and how you manage those.
- How has your relationship with your body changed due to a serious illness?
- How has your relationship with your body been affected by physical aging?
- Use the lines from Jane Kenyon’s poem, quoted in this post, as a place to begin writing.