I don’t intend to eaves drop on conversations, but it’s unavoidable sometimes in public places. Wherever I go, restaurants, coffee shops, grocery stores, airports or parks, health care stories waft through the air. The snippets go something like this:
My husband was hospitalized with chest pain. He had the “widow maker” kind of plugged artery. Fortunately, they opened it right away…
I have been feeling so run down and fatigued. I think I need to go in for a full physical…
My cancer came back. Fortunately, my oncologist knows about an experimental treatment to try…
My back hurts. I saw the doctor and had an MRI. It showed some wear. I can’t work anymore. I lost my job. I don’t know how we will pay the mortgage. The physical therapy hurts even more. I am afraid my wife will get fed up with me. The pills don’t help…
Today is the tenth anniversary of being cancer free after surgery, radiation and chemo. The experience changed me into a better person. I don’t take life for granted anymore and I am grateful for every sunrise and sunset…
It would be easy to dismiss the continuous hum of these dangling conversations by saying that health care is 17 percent of our economy, so of course the topic will frequently surface. But I wonder if the prevalence of medical stories has more to do with how we all use narrative to make sense of our lives. We understand and relate to events and people by weaving happenings, heroes, villains and circumstances into coherent sequential stories.
The book “The Wounded Story Teller” by Arthur Frank, a sociologist and survivor of testicular cancer, provides insight into illness stories.
Frank describes the need we have to predict and control how our bodies will perform in situations. A few months ago during Flu season, I experienced a trivial problem that illustrated this idea. I developed a hacking cough that would occur without warning as I was speaking or trying to listen to others. Suddenly, I could not trust my body to perform as expected and I needed to set new expectations for my workday. Though irritated, I kept a sense of humor about it and told myself a comforting story – that the disruption was temporary and insignificant.
In contrast, serious illness represents a loss of the personal story and expectations that previously guided the ill person. The central problem becomes how to avoid living a life that is diminished by illness or by the reactions of others to it. Medical stories turn illness from fate into experience and enable the storyteller to create bonds of shared suffering and vulnerability between themselves and their listeners.
According to Frank, each story is unique to the storyteller, while at the same time falling into one of three common patterns: restitution, chaos or quest stories. I would add a fourth – the clinical narrative, when we health care workers act as the storytellers.
Restitution (cure) stories are the most common narrative. The primary goal is to permanently restore a normal life; illness is viewed as a temporary detour. Whatever happens can only be understood as a necessary step toward the achievable goal of health. Restitution positions physicians and modern medicine as heroes and relegates the patient to the object of that heroism. At their best, restitution stories portray patients as the fortunate beneficiaries of modern medicine; at their worst, the stories depict patients and families as victims of a dehumanizing modern medicine bureaucracy.
These stories reflect the deeply-held longing of some of us, especially in western societies, to use science and technology to explain, control and “fix” lives. The restitution narrative is often useful and accurate in the short term, but fails as a long-term story of life – we cannot outrun the inevitable losses of aging.
My first three examples of overheard conversations represent restitution. In the first, the husband’s life is saved when “they” (physician heroes) open his plugged coronary artery. In the second example, the storyteller assumes that the fatigue represents something fixable. In the example of the cancer relapse the storyteller hopes an experimental treatment suggested by the oncologist hero will restore health.
Individuals living in chaos lack a sense of viable future. Disconnected sentences pour out of the storyteller as a rapid-fire jangle of present assaults. This narrative is more common at the onset of a serious illness.
The conversation I overheard about back pain feels chaotic with one misfortune begetting another.
The quest narrative views the illness experience as an opportunity to transform oneself into a better person through overcoming adversity, re-learning what is important in life and sharing with, and supporting, others who are suffering.
The last example of overheard conversations conveys gratitude for what illness taught the cancer survivor.
The clinical narrative
Consider the medical record as a restitution story told from the perspective of those of us working in healthcare. After prompting patients to tell their stories in a way that we can find meaning (“Please describe your pain. Is it sharp or dull? Did it travel anywhere? What brought it on?”), we capture a portion of the story in words, pictures and numerical data that may to help us discover something fixable, or at least explainable.
As we pursue our own storytelling to identify what we can control, we may overlook the chaos the patient is experiencing, or minimize how the patient feels about losing their personal story and life expectations because of the re-writing the illness is causing.
The excerpt below, describes a clinical summary for my hospitalization in May 2013 for a Transient Ischemic Attack (TIA).
This 62-year-old male noticed the sudden onset of imbalance while browsing in front of the refrigerator… On arrival he displayed staggering gait, inability to tandem walk and perhaps mildly slurred speech. A code 99 (possible stroke) was called. CT scan of the brain and a cerebral Magnetic Resonance angiogram (MRA) did not show an acute cerebral hemorrhage or infarct (stroke). The symptoms improved greatly during the first 3 hours and completely resolved within 12 hours. He was discharged to home on low dose aspirin therapy for presumptive diagnosis of Transient Ischemic Attack.
Note that the summary is useful and concise for medical purposes, but lacks any trace of what the experience meant for me and how I would need, over time, to tell myself a story that would help me navigate vulnerability.
Please use comments to describe your thoughts about story-telling an illness. How can we strengthen our ability to hear the various narrative themes and help people look at the stories they are telling themselves?