What you fear
will not go away: it will take you into
yourself and bless you and keep you.
That’s the world, and we all live there.
(From: “For My Young Friends Who are Afraid,” by William Stafford, In: Ask Me: 100 Essential Poems, 2014)
It was the suddenness of it, the disbelief and shock, and a sense of unreality. Then there was the fear. “We think you’ve had a heart attack.” My family doctor was at my bedside. She’d come to the hospital to see me a day after I was admitted for observation.
“What are you doing here, Dr. B.?”
“I saw you’d been admitted, and I had to come as soon as I could. I wanted to be the first to tell you…
“Tell me what?”
“We think you’ve had a heart attack…”
“What? No…I just had a physical two weeks ago…Everything was fine. Dr. B., I can’t die yet! I have a grandson about to be born!” I burst into tears.
She tried to reassure me. “You aren’t going to die, and the results aren’t clear. I’ve asked the cardiologist, to go over your test results. He’ll be here soon.”
The cardiologist arrived a short time later. I hadn’t suffered a heart attack, he said, but I was experiencing heart failure. I didn’t know, exactly, what heart failure meant nor how it differed from a heart attack. He was patient with my questions, understanding of my weepy state, and reassuring. Three days later, I was discharged, a heart failure patient with a thick bandage covering a mound of bulging skin just below my left collarbone. It was destined to be my constant reminder of the implanted cardiac device, a defibrillator, impossible to ignore, and the certain fact I was now living with heart failure. I felt vulnerable in a way I had never before experienced.
For the first several months, most of my days and nights were punctuated by anxiety, the lingering disbelief that I had become a heart failure patient and an exaggerated fear of mortality. I was slow to share my diagnosis with others than close friends and immediate family members. Even then, there was the question, “Heart failure? What does that mean?” I shied away from reading too much about heart failure; the statistics were not in my favor.
…My heart is more duplicitous…
It says, I want, I don’t want, I
want, and then a pause.
It forces me to listen…
It is a constant pestering
in my ears…
I want, I don’t want
How can one live with such a heart?
(From “The Woman Who Could Not Live with her Faulty Heart,” by Margaret Atwood, In: Selected Poems II: 1976-86)
It’s nearly ten years since I was first diagnosed. I “look” normal, other than the bulge beneath my collar bone, which dictated a change in the choice of shirt necklines to keep it as hidden as possible. After the initial diagnosis, my annual visits to the cardiologist and defibrillator clinic in California were routine. Other than annual blood work, there were few tests over the next nine years; the conversations were pleasant, but more often, general.
“How are you doing?”
“Fine, I think.”
“Let’s listen to your heart.”
And I would leave his office, his words, “You’re doing fine,” echoing in my head.
I was lulled, in some ways, into a false sense of well being, as if I didn’t belong in the waiting room with the other patients. I’ve never felt my defibrillator, and I’ve questioned whether it was truly needed, especially since a recent echocardiogram showed suspicious growths on the lead wires, suspected to be blood clots. Apparently it is. “I’ll put your doubts about that to rest,” the cardiologist in the defibrillator clinic replied when I asked. “You have episodes of ventricular tachycardia. I wouldn’t want you walking around without your defibrillator.”
Another suspected blot clot showed up two weeks ago in my echocardiogram. Warfarin has been added to my medications in the hope that they will be dissolved before they cause any problems. Yet another phase, another medication, that living with heart failure warrants. For a few days, my fears and worries were close to the surface, but another pill in the daily arsenal has gotten progresssively easier to accept. I push my fears or anxiety as far from my mind as I can, reminding myself of all the heart failure patients who have far more serious heart conditions than I do.
A 2010 narrative review of studies on the experience of living with chronic heart failure, reported in BMC Health Services Research, identified the most predominant impacts on a patient’s daily life from living with chronic heart failure. They were social isolation, and losing a sense of control and living in fear. Social isolation was a product of the necessary life style changes due to shortness of breath, fatigue, and medication regimes negatively impacting patients’ ability to socialize with friends and family. Patients’ reported sense of losing control over one’s illness occurred when they felt they no longer were able to influence their lives or illnesses. And not surprisingly, living in fear of pain, death or one’s future was reported as a central aspect of chronic heart failure in several different studies, although women tended to report fear more often than men.
I’ve thought a lot about how fear is expressed by the men and women from my cancer writing groups. Fear has been the most commonly expressed emotion when I’ve asked them to explore the experience of being diagnosed with cancer. For most, that fear gives way to hope as treatment progresses, and for many, the words “cancer-free” or “remission” following treatments are delivered. But for those who hear the word, “terminal,”the prospect of dying is soul wrenching, but there is time before cancer claims the body. When my father was diagnosed with lung cancer in 1992, he was handed his death sentence, just three months left to live. As painful as it was, we were all were grateful for those precious last weeks. We had time to be with him, to prepare for losing him, to let him know how much we loved him.
With heart problems, my fears were of sudden disappearance. With most cancers there is little fear of sudden death. Fears vary. Differences in fears are part of the individual experience in illness. If a heart attack blows you away, cancer chips at you bit by bit. — Arthur Frank, At the Will of the Body
We all carry our own brand of fear, and mine, if I’m honest about it, is a constant shadow that trails around after me, invading my daydreams or my night thoughts without warning. I sometimes awaken in the middle of the night and wonder how long I’ve got. My younger daughter and her family have recently returned to live a number of years in Okinawa, Japan, and I feel heartache at the thought of not, perhaps, being able to travel overseas to visit her and my grandchildren. I question if I should get things in order now rather than later, whatever “getting things in order” means, since it is the possibility of an errant blot clot that introduces the “suddenness” of life ending that I try not to think about. Then I hear myself telling a concerned friend that my intent is to do whatever I have to do to live as fully and as long as I can. And I know I mean it.
I see the worry in my husband’s face when I come home from another appointment with my cardiologist. I recount to him the latest discussion with my doctor, but I find it difficult to admit fear or worry to him or my daughters. Besides, I am all too aware of others, many much younger than I am, living with heart failure and disease.
I’ve been fortunate for the extraordinary care I experience here in Toronto. But it doesn’t mean I don’t scour the results of every cardiology appointment and tests, familiarize myself with new terminology and read whatever relevant research I can find online about aspects in my file labeled as “abnormal” whether in my blood work, or as most recently, appearing on my echocardiogram. As I do, I feel the fear yawning awake and peering over my shoulder. I do my best to push it aside, before my worry is exacerbated and the fear of sudden, unexpected mortality surfaces, food for the dark shadow rarely far from my consciousness.
“For fear, real fear such as shakes you to your foundation, such as you feel when you are brought to your mortal end… So you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don’t , if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.” From The Life of Pi, 2001, by Yann Martel, p. 162
Is fear more manageable if we bring it into the open? I think it is, which is why I’m attempting to write about it. Each of us experiences fear at different times in our lives. It’s the body’s and mind’s reaction to a perceived threat. Fear kick-starts our metabolism, useful in times of real threat, but not as useful if it takes up residence in our daily life, as it easily does when we live with the knowledge that heart failure leads, ultimately, to death. There is no cure. Prolonged fear suppresses the immune system, and it hinders our ability to be fully present to the here and now of our lives. The challenge, especially when fear seems to move in with us like a roommate we can’t get rid of, is to keep it from diminishing our ability to live fully and enjoy the life we have. I think now, as I consider my fear, of Joy Harjo’s poem, “I Give You Back,” as she describes coming to terms with fear and letting it go:
…I take myself back, fear.
You are not my shadow any longer.
I won’t hold you in my hands.
You can’t live in my eyes, my ears, my voice
my belly, or in my heart my heart
my heart my heart.
But come here, fear
I am alive and you are so afraid
(From: She Had Some Horses, 1983)
Suggestions for Writing:
Look fear in the face and writing about it, whether in story form, an essay or poem:
- What keeps you awake at night?
- When do you feel most vulnerable?
- When does fear most often visit you?
- What do you do to hold fear at bay?
- If you had a metaphor or description to illustrate the fear you feel from heart failure, what would it be?