Open Heart

by Jay Neugeboren

  And there is this too: even if my friends and doctors had been unable to do anything to save my life, as would have been true a generation ago—or if I had been among the small percentage of those who do not survive bypass surgery, or the larger number who emerge from surgery with various disabilities—how do we calculate all those things my friends did—those things that we cannot measure? How do we calculate what they did, and continue to do—by their kindness, their caring, their love—to enhance the quality of my life while I am still living it?

  In ordinary times we go to our doctors for complaints that usually resolve themselves without medical intervention. Sometimes we go to them for what we think are minor problems—a swollen gland following a cold; some intermittent shortness of breath—and discover the problems are not minor at all. Sometimes we go to them in emergencies, or for matters grave in the extreme. And when we go to them, as I did—or are taken to them—we put ourselves in their hands, literally and figuratively, hoping they will understand our problems, and have the knowledge and skill to ameliorate them.

  But whenever we go to our doctors, we bring our selves—who we are, with all our vulnerabilities, strengths, and mysteries—and to the degree that our doctors pay attention primarily to the numbers our bodies generate, it seems, to that degree do we lose not merely a portion of our humanity, but the benefit of those skills, essential to diagnosis and treatment, that continue to lie at the heart of good and effective medical practice.

  11

  So Why Did I Become a Doctor?

  THREE DAYS AFTER sixty-second birthday, I fly to Stavanger, Norway, to attend an international psychiatric conference, after which I travel with my hosts, Dr. Gerd-Ragna Bloch Thorsen—organizer of the conference and director of the local psychiatric hospital—and her husband Olav, a general practitioner, into regions of Norway that can be reached only by foot.

  For several days, along with two other couples, friends of Gerd-Ragna and Olav, we make our way into the Ryfylke mountains, north of the Lysefjord, into a part of the world that is, I write in my journal, “outrageously beautiful—the most extraordinary landscape I have ever seen: every few meters, a new vista, new and remarkable beauty. Fog and sun—mystery and radiance—!” Although it is now the second week of June, the weather is cool, and we hike through mist and drizzle much of the time, up and down hills of rain-slick, moss-covered rock, through muddy streambeds, across open fields, along forest trails bordered by shrubs and trees of astonishing diversity, and through narrow gorges and valleys that open suddenly onto sunlit, golden meadows, or give rise to steep, cave-pocked mountains. By the time we stop for lunch on the first day, take off our backpacks, and eat—we sit on boulders that form a half-moon around a waterfall—I am, through four layers of clothing, drenched through with sweat.

  We take shelter for the night in an unelectrified cabin, fish in a nearby lake, watch wandering sheep graze in the distance, talk, read, and play cards by candlelight. Although we bring artifacts of civilization with us—cameras, watches, books, matches, canned food—the workaday world seems far away, and it feels wonderful to be bone-weary from the day’s journey, to have sweat dry and cool on my body, to sit by candlelight, eating and sipping wine, laughing and exchanging stories.

  I had visited with Gerd-Ragna and Olav two summers before, in June of 1998, when I was a guest speaker during Stavanger’s annual psychiatric conference (called, refreshingly, banners heralding the event strung across the city’s central square, “Schizophrenia Days”), at a time, eight months before surgery, when I had had no intimation that my heart’s arteries were closing down. Gerd-Ragna now teases me about my “condition”—she claims we have gone at an uncharacteristically sluggish pace all day in deference to it—and when my companions inquire, I find myself telling them the story of what happened, then listening to them talk about illnesses and accidents they’ve survived.

  We also trade stories about places we’ve traveled to in other years, and when I talk about my time in Alaska, what I recall first of all is the openness of the landscape—the absence of people and habitations in a place where slightly more than six hundred thousand people, most of whom dwell in and around the city of Anchorage, live in a territory more than double the size of Texas.

  I describe flying in a single-engine plane north of the Arctic Circle, of circling in dense cloud for nearly an hour, then emerging to see a gorgeous expanse of land and water appear below: wide horizons and endless vistas—ocean, forests, inlets, streams, and fields that seem, in their sudden stillness and beauty, preternaturally pure and serene.

  How, I recall wondering at the time, could a world that appears so lovely and peaceful contain any menace, any danger? And how, having had my life returned to me, could I ever be unhappy again—how ever again take even the meanest detail of life for granted? In that moment—I touch my chest with the palm of my hand, feel my heartbeat, feel heat rise through my clothing—the landscape below seemed to correspond to a landscape within: to a sense that within me vast expanses of wondrous territory were being born.

  In the semidarkness of a cabin far from home, remembering and talking about this moment, ordinary things—eating, talking, laughing; a spoon, the reflection of candlelight on a window, the palm of my hand—seem extraordinary. I see myself in Alaska—in Kotzebue, at midnight—leaving my hotel and walking along the beach. The sky is a pale, clear blue, nearly white at the distant horizon, and I cannot tell where water ends and sky begins. The sun is out as if at midday, and on the Arctic Ocean young people are swimming and water-skiing. Saved from darkness for a while, a month past the summer solstice, the world lies all before me, suffused in mystery and wonder, alive with possibility.

  I sit and look out to sea, and think about how, only five months before, I was deep in anesthetic sleep, my heart—this three-quarter pound oblong of flesh—disconnected, drained, and worked on by human beings who mended it and then returned it to me. It is the fact that people actually held my heart in their hands—that it was physically touched, and that, in a prolonged moment, tenderness and technology joined to save my life—that now astonishes, and humbles.

  Imagining my heart, like the tiniest of infants, being cupped in skilled hands, and wondering about the unknown ways this literal laying on of hands has wrought changes in me, I find myself feeling grateful for having survived—of course—but more grateful for having been ill: for having had heart disease, for having had my chest opened, for having been operated on. This, I think, is my true and great good fortune, for had my arteries not been severely occluded, and had my heart not been repaired, I might never have known how dear I was to my children and friends, and how lucky I was, in a life as precious as it is fragile, to know them.

  When I return and talk with Jerry about what I’ve been thinking and feeling, he responds by telling me about his travels, and about how they proved crucial in his career.

  “Going to Nigeria, and living there for two years,” Jerry says, “was the defining event of my life. I was one year past medical school, early on in my internship, and I was sort of groping around, actually thinking for a while of going into psychiatry.

  “This was 1964, and I knew I didn’t want to go to Vietnam. So I enlisted in the Public Health Service as a Peace Corps doctor. It was an option that closed down a few years later, but at that time it enabled you to do your national service without being in the military. And I was very lucky, you see, because what happened was that I experienced a series of revelations about what another culture and society are, and that led to a new understanding of disease.”

  Jerry and I are sitting in my living room on the West Side of Manhattan, an hour or so after he has given a lecture at Roosevelt-St. Luke’s Hospital on the importance of adherence in the treatment of AIDS. The concept of “pharmacological forgiveness” (normally, if a patient takes 80 percent of a prescribed medication, there are few problems) does not apply to AIDS, Jerry explains. When it comes to AIDS, if you have 80 percent adherence you only
get, at best, 50 percent suppression of viral replication. (This happens because in the presence of partially suppressive therapy, viral replication will select for viral variants with resistant mutations.) To have a good outcome, one needs at least 95 percent adherence—perfect or near-perfect adherence for the duration of the patient’s life, and in this AIDS is unique, Jerry says, since no other infectious disease requires lifelong therapy.

  He talks about the importance to adherence—and, thus, to survival—of the doctor-patient alliance. He cites studies, including several of his own, that document the most significant variable in the initiation of therapy, and the single, most important element in the doctor-patient alliance: trust in the doctor. He reviews ways of overcoming patient resistance and mistrust, and goes over protocols and design interventions that encourage adherence. The key is simplification—reducing pills and doses as much as possible. “It is naive and unrealistic,” he says, “to expect that most patients can adhere to complex antiretroviral regimens, perhaps for life, without thoughtful, practical, and continuing support.”

  Most clinicians, alas, receive little training in assessment and support of adherence, but studies make clear that they, and their patients, benefit when they do, and when responsibility is shared. “The wonderful biomedical advances that have become available for the treatment of AIDS must be accompanied by parallel behavioral practices,” Jerry tells his audience. “This is why the patient-provider relationship is very precious, and why we should be proud of it, and honor it, and not neglect it.”

  “Most of the time when we live in another place, we’re tourists,” Jerry says. “We’re there for a little while, and then we move on, and we don’t get to really understand much of the culture. By the end of my first year in Nigeria, though, I began to appreciate enough about both the culture and the society for things that had not made sense to me to begin to make sense.”

  My sublet is on the first floor, street-side, of a building on West 54th Street. Jerry sits in an easy chair in front of the window, and while he talks I watch men and women, policemen and policewomen, moving about in front of the station house across the street—the 18th precinct—coming and going to and from the precinct and the nineteenth-century courthouse—in former times, Men’s Night Court—next to it.

  “What am I doing here? I asked myself,” Jerry says, “and the answer was, I’m here as an agent for change. But then I thought: Who am I to be here to change this culture? There’s a certain arrogance in thinking that way—part of an old colonial mindset.

  “Well, I said to myself, I brought Western medicine, and we could argue that perhaps medicine, of all things, is an intervention that, though it changes the culture, still provides a definable good.” Jerry stops. “But okay—let me give you an example of what happened there—of how and why things changed for me.

  “I wondered why it was that the Nigerian children had a higher infant mortality rate than we do, and part of the reason, I saw, was that they were exposed to multiple diseases at the same time during their first year of life, whereas our kids are protected by being separated from one another. We raise them in our own little nuclear environments, and only at a later point do they go on to nursery school and kindergarten. Then they start getting diseases, but one at a time—and they’re already much stronger and able to handle them.

  “But in Nigeria, the children would be together from six months of age on—as soon as weaning ended, the older siblings would take care of the younger kids and you would see these bands of kids who’d range in age from one year to about six or seven, and they’d all be together. And Nigerian kids have little in the way of toys or dolls or playthings. They have a stick or a hoop and they play with each other, not with objects.

  “So a lot of kids would be sick with a lot of different things at the same time. In order to change the impact of multiple infectious diseases that result in higher mortality, then—and forget about vaccinations for a second—you have to change the tribal practices and separate the kids, but if you separate the kids, you change the way they learn to relate to one another, which is part of the genius of the culture.

  “And I said ‘Oh my God, look at that—we don’t know how to organize our lives like this. It’s different, and it has an effect on childhood diseases, and if you want to improve childhood mortality, in a sense you have to change childhood development, and do I really want to do this?’

  “I mean, sure—kids shouldn’t die. But on the other hand, there are certain things about this culture that are vibrant and beautiful and have to do with interpersonal and interfamilial kinds of things that we don’t have, and that I think we suffer from not having. Now, on any scale of things it’s better to prevent childhood mortality—of course—but on the other hand you have to appreciate that some of the technique for doing this is going to change the society at a fundamental child-rearing level. So this is what began to dawn on me near the end of my first year there.

  “I’ll give you another example,” Jerry says, and he proceeds to tell me the story of the first medical article he wrote, about a disease called schistosomiasis.

  “Many of the Peace Corps volunteers were high school biology teachers, and we organized a program and taught them to recognize schisto in the urine.* The host for schistosomiasis—it’s also called bilharziasis—is a snail called bulinus that comes from East Africa and is endemic to the Nile.

  “But they didn’t consider it a disease. The Yoruba word for it is itosi aja, which means ‘dog’s gonorrhea,’ and they saw it as a kind of coming-of-age—the equivalent of menarche in girls. And this raises a very interesting question: If a pathologic entity occurs in a hundred percent of people, is it a disease?

  “Now the natural history of schisto is that it goes away in time because your body creates an immune response to it. You’d see the rates rising in schoolboys up to the age of about twelve to fourteen, and then they’d go down. And the rates in girls were close to zero, and I said, How could this be? What’s going on?

  “So I sat on the banks of the rivers there and watched how the rivers were used, and this is what I learned. In the morning, before the sun would be fully out, the river was used by the mothers and their infants. The mothers would wash the clothes, and the babies would splash around in the water.

  “At noon, when the sun was at its highest, the kids on their lunch break from school would play in the river. It would be the boys mostly, and not the girls, because they were a little modest and didn’t have bathing suits and wouldn’t go naked into the river. But the boys went in their underpants. And in the evening, the older men would come back from the fields and use the river, and wash themselves and then go home.

  “Now the biology of schistosomiasis is that it has a complicated life cycle whereby the snails are the intermediate host. You pee or drop a load and it gets into the snail and then it grows in the snail and emerges into infection of the person—it’s spread by contact with skin in infected water, and God, or nature, seems to have provided for the snail to come out according to the availability of sunlight, so the middle of the day was when the cycle for transmission was best set up: the sun was out, the snails were out, the boys were out peeing and swimming in the water, and bingo!

  “So that explained why the rates were higher in boys of that age and it was kind of a revelation—like ‘Boing! Now look at that—it has to do with how the stream is used, and is a combination of biology and behavior,’ and this made me appreciate that disease is not just about biology, but a combination of many forces that combine to result in disease etiology.”

  Jerry talks about having become enamoured of the richness of the spiritual world that was part of life in Nigeria, and about the complexity of their religious beliefs and practices.

  “Yoruba have about four hundred deities,” he says, “and they exist for every kind of life experience, and are involved in different forms of worship—different costumes, different music, different sculptures, different in everything that relate
s to each particular deity.

  “So there was this enormous array and richness of religious practice that, although it contained within it a vague concept of a supreme deity called Oduduwa, was essentially animistic. And this meant that everything you touched was alive, and had a spiritual life, and was connected.

  “So they had that, but they didn’t have penicillin. And we have penicillin but we’ve lost that to some degree, and what I thought was that in an ideal world you’d want both. There are always tradeoffs. In order to have penicillin, I reasoned, we in some ways gave up some of our spiritual heritage. Now I’m a penicillin doctor and I’m surely not abandoning that. But what happened during my time there was that being in another culture took from me the belief in perfectability and progress I’d been schooled in as a twentieth-century American because it made it clear that progress always comes with a price.

  “Then, my two years up, I returned to the States, and looking back, what politicized me when I got back here, I think, was living in the midst of the material wealth of our society after having lived in an environment poor in material resources but rich in other ways, and observing—feeling!—the maldistribution of wealth in our own country more so than at any other time of my life.

  “Now my parents were socialists, and I used to go to these socialist summer camps, but nothing prepared me for the way things struck me on my return, and how, within our own society—and forget the disparities between rich and poor nations— but how there was such an enormous maldistribution right here at home, in access to health care especially, and what I decided was that if I were to be poor, it would be better to be a poor Nigerian than a poor American. Because in their culture if you were poor, although you’d rather be rich, you weren’t devalued for being poor. Whereas in our society, if you’re poor you’re a nonperson.