Open Heart

by Jay Neugeboren

  A week after I arrive home—two weeks after surgery—Seth and Miriam fly up from Washington, D.C., for a few days, and we drive with friends to Amherst to watch UMass play Temple in the last home basketball game of the regular season. We park about three-quarters of a mile from the UMass arena and walk at a brisk pace, and in icy weather, to and from the game. (UMass wins 57–49.)

  By the time Miriam and Seth leave, I am doing what I have been doing for most of my adult life—waking early, making myself breakfast, and then going up to my third-floor office, turning off my phone, and working at my writing. By the end of the following week, as I initially recall this period of my recovery, I am walking between five and ten miles each day, and a week after this—four weeks after surgery—I am back in the pool, once again swimming a mile a day.

  My recovery is as swift and full as my crisis was sudden and surprising.

  “You’ve had a true near-death experience,” Phil says to me several times, but though I feel happy to be alive, and though I’m aware that friends and family also seem happy that I’m still here, what has happened, I tell Phil, hardly seems real. The moment when, two days after surgery, I was walking along the hospital corridor by myself, though, stays with me and seems very real—and the words that came to me then sing to me now, intermittently and insistently: How little we know.

  But for some good fortune, good friends, and good doctors, I keep reminding myself, I could just as easily not be here, and I wonder if, for purposes of telling this story, I can do what I need to do for that moment to take root and—like collateral blood vessels?—begin to blossom.

  Novels and stories have often come to me this way: moments, words, or voices, seemingly dissociated, attaching themselves to fragments of memory, or imagined scenes, or dimly lit and half-hidden faces, images, or remembered pieces of dreams—or to odd bits of diverse and arcane data, along with a curiosity concerning matters unknown and half-known that I long to know more about: of how certain things are or were or might be, and of how and why things work or happen the way they do. These seemingly random elements spin around in my mind, conspire in my imagination, and fire my desire to know. When the words, pictures, and dramas that take up residence within my consciousness become more real to me than the external world, I yield to them. Then, in and through the writing itself—the making of stories—I have sometimes been able to make sense out of what for me would otherwise remain senseless and confusing. It is largely through this process that I have, through most of my adult life, been able to make peace with matters disparate, disturbing, and often terrifying.

  I talk with my brother Robert several times. Although he is designated as mad by the world (the consensus of the staff at his present hospital, as at his previous residence, South Beach Psychiatric Center on Staten Island, is that he will never be able to live outside the locked ward of a hospital), in his conversations with me he seems very realistic and very loving.

  He says he is relieved and happy I have survived surgery and am back home, and he asks about my new book—the one about to appear—and if I am going to stop writing about him and go back to writing novels again. When will he be able to see me? I tell him that I’m already back at work on a novel, and that the doctors want me to wait four weeks before I drive again—not to protect my heart, but to ensure that my chest, stapled, sewn, and wired back together, won’t experience undue strain. As soon as I’m given the green light, I say, I’ll come down to visit him.

  When I do drive down to visit him six weeks after surgery, he is allowed out on the hospital grounds with me. It is a clear, sunny, early spring day, and we sit on the lawn in front of his building. In the distance, a patient is feeding bread to some of the dozens of Canada geese that regularly set down on this lawn, and I recall times, a half century ago, when Robert and I, at summer camp—on days the kitchen staff would get the afternoons off—would sit on the grass by a lake and eat sandwiches together. Now, a few minutes before I leave and Robert goes back to his locked ward in the hospital’s main building—a tall, ill-kept, warehouse-like structure with barred windows and prison-like security entrances and exits—he says he’ll understand if I say no, but would I be willing to do him a favor? Of course, I say. “Would you show me your scar again?” he asks.

  Largely because of the intervention of Dr. Alvin Pam, chief of psychology at the hospital, Robert is receiving the best care he has had in years, and this has been a long time coming. After the publication of Imagining Robert, which chronicled Robert’s history as a patient in the New York city and state mental health systems, Dr. Pam called and suggested Robert consider transferring to Bronx State. “We think we can do better,” Dr. Pam said. “No promises, of course—but if Robert’s willing to give us a chance, we’d like the opportunity to work with him.”

  Now, at Bronx State, Robert is being treated with kindness, skill, and optimism—his medications carefully monitored and set at the lowest possible levels, his behavior, feelings, and concerns addressed regularly by staff and in regularly scheduled sessions with a therapist, and his expressed wishes to leave the hospital responded to respectfully and without, as in the past, skepticism or mockery. Rather the opposite. He is being treated as a human being, and not as a set of symptoms. This becomes clear early on, when Dr. Pam calls to tell me that everyone has been talking—and laughing—about something that happened that morning. Asked to give a urine sample, Robert had gone into the bathroom, filled the flask, brought it to the nurse, and then, just as she reached for it, taken it back. “I’d like a receipt, please,” he said.

  Being treated humanely—being in a place where the staff makes a genuine attempt to listen to him, to understand him, and to work with him, and where they appreciate his sense of humor—seems to enable Robert to act in increasingly humane and hopeful ways, and he talks with me now, a few weeks after my operation, about how much better he is feeling, about not wanting to be locked up for the rest of his life, and about getting out of the hospital.

  Well, I say to him, then we are both in recovery, yes? He laughs, and when he does I am reminded of something that has impressed me in recent years with regard to those conditions we call mental illness: that all the warmth, good feeling, and good intentions in the world have been of little help to people like Robert if they have not been accompanied by knowledge and skills specific to mental illness. Compassion without skill, I’ve come to see, is as inadequate for people struggling with the complexities of severe mental, emotional, and neurological conditions as is skill without compassion.

  But how different, I now begin to wonder, is this from what happens in other medical specialties, and in medicine in general? By way of reply, I hear again what Rich has been telling me with reference to cardiology, and what he, Jerry, Arthur, and Phil have been telling me through the years: that being a doctor is at least as much of an art as it is a science, that paying attention to and listening to the patient are crucial, that care is more important (and possible) than cure, that it begins in curiosity, attentiveness, and understanding, and that miraculous as many of the new biotechnological developments are, they are not at the heart of what matters most in the treatment of disease, and of what makes most of the difference for most people most of the time.

  “There are no cures,” each of them says to me. “There are only various conditions that, with skill and luck, we can manage to various degrees.”

  Put most simply: All the factual and scientific knowledge in the world does little good for people like my brother when those who own this knowledge do not care about the people they serve and are not committed, first and last, to trying to work with them and understand them in the context of their histories, of the ongoing nature of their conditions, and of the uniqueness of their individual selves.

  And so with me. My experience has been dramatic enough, but what begins to seem more significant and intriguing—what, once my life has been saved and given back to me by the prompt and excellent medical care Rich and Jerry were able to provi
de, and by technologies and skills nonexistent a few decades ago (the heart-lung machine, the cardiac care unit, clot-busting drugs, stent angioplasty, bypass surgery), seems more essentially life-giving— is the friendship of four men I have known for most of my life.

  And those life-giving qualities of friendship that enrich our lives and get us through hard times, I muse, don’t they have a good deal in common with those elements of medicine, and of the doctor-patient relationship in particular, that often sustain us in ordinary times and restore us when we are ill? Sensing, too, especially when talking with my friends, that the science and the art of medicine have, in recent years, become increasingly and dangerously disconnected, I wonder what we might do to begin to repair this breach.

  In my desire to understand what we do and don’t know about disease, I ask my friends about the changes they have seen since they started out in medical school forty years ago, about what we know and don’t know about their specialties, and about medicine in general. If they could draw up an agenda for medical care in the near and distant future, what would be on it, and in what order of priority, and what changes and reforms would they urge?

  My friends talk with me at length, they offer suggestions for reading, for areas of investigation, and for people I should talk with; in talking with me freely about their lives, both personal and professional, they also offer further proof of how fortunate I am to count them as friends.

  “You’re not cured,” Dr. Cabin says to me at the time of my four-week postsurgical checkup. “But you’re as close as it gets. One of the reasons I went into cardiology, in fact, is that the outcomes, as in your case, are so often positive—so much more so than in other branches of medicine.”

  How bad was I when you first saw me? I ask, and he smiles and says that I was as bad as it gets, and that we have no real understanding of why my condition was what it was. And my life from now on?

  “No restrictions,” he says. “Absolutely no restrictions. You’ve been given a new lease on life.”

  A day or two after my visit with Dr. Cabin, I act on a decision I made a few days after surgery while I was still at Yale-New Haven Hospital: I decide to move back to New York City, where I have not lived for more than thirty years, and, my friends and my children cheering me on (“It’s your time now, Dad,” Miriam says), I start looking for an apartment in Manhattan.

  As my health and strength return, they bring with them large desires and ambitions. I put myself on a writing schedule both new and exhilarating—working on one book (fiction) in the morning and on another (nonfiction) in the afternoons, and leaving myself open to the possibility that on some days I may not get to both, or—who knows?—I might wind up working on something else altogether. The main thing, I tell myself, is to be open to possibility.

  When I talk with a friend in Northampton about moving to New York, about my new schedule, and about the vast wells of energy I’ve been discovering within me, she says something about my doubtless realizing, given what I’ve been through, just how short life is, and about my wanting to “grab in” all the pleasure, excitement, and living I can.

  “Not at all,” I reply. I’ve decided to move back to New York, I explain, not because life seems short, but for an opposite reason: because my sense of things now, given what I’ve been through, is that I have all the time in the world.

  3

  The Consolation of Diagnosis

  THE STORY I TELL others in the weeks and months following surgery—and the story I first tell (and sell) to myself—is this: A sixty-year-old man in good spirits, excellent physical shape, and seeming good health, without apparent risk factors or symptoms, discovers that his major coronary arteries are nearly 100 percent blocked. Although two doctors miss the diagnosis, an old friend who is a cardiologist makes the correct diagnosis, and he does so by telephone from three thousand miles away. The sixty-year-old man is rushed into emergency surgery, his life is saved, and he emerges from the surgery, like his name, newly born—healthy, energized, and radiant with the gift of life.

  When I tell the story, and friends ask about cholesterol levels, blood pressure, smoking, exercise, diet, stress, and the rest, and when I reply that I seem to have had none of the classic risk factors or symptoms, most people nod and say, “Oh—then it must be genetic.”

  When I respond by saying that I don’t really have what doctors call “a positive family history of coronary disease,” I sense that people feel not merely puzzled, but betrayed. If a man in excellent health, without risk factors or overt symptoms—a sixty-year-old man swimming a mile a day and able to play competitive tennis and basketball with twenty-year-olds—can be this close to death, and if doctors seem clueless as to why this is so, then in how much danger are most of us most of the time?

  More than two dozen friends go on what they call “Jay Neugeboren-inspired diets” (two close friends lose more than fifty pounds each within six months) and/or to their doctors—for checkups, cholesterol screenings, electrocardiograms, stress tests. You were in the best shape of any of us, they say. If this could happen to you…

  Although we may give lip service to the notion that our fates are never really in our own hands and that the forces that determine our destinies—when and how and why we die, or when and how and why we survive and live on—are beyond our control, when it comes to our own lives, most of us are reluctant to believe we are as ignorant and helpless as it often seems we are.

  (On the day I begin writing this chapter, Arthur Rudy calls to tell me about a colleague—a fifty-three-year-old doctor in excellent health, who, while exercising on a treadmill, died this past week of a heart attack. The man was not a smoker, not overweight, had no apparent risk factors or symptoms. His case seemed so surprising—so anomalous—that the family requested an autopsy. The results from the autopsy? No help, Arthur says. Not the least clue as to the possible cause of the heart attack.)

  Celebrating my first Thanksgiving after surgery, in November of 1999, thirty of us gathered at a cousin’s home, one of my cousins looks at our children—a dozen of them, some with spouses and children of their own now, sitting around their own table as they have each Thanksgiving for the past twenty-five years—and says that she envies them and their generation the great medical progress they are going to benefit from during the first decades of the new century, including the miracle, not merely of innovations such as bypass surgery or gene therapy, but of “total body transplants.”*

  When I suggest to my cousin, as to others, that, my own good fortune notwithstanding, things may not be quite as miraculous as the media would have us believe, what I usually hear back is that yes, there may be some glitches along the way, but if, say, current medications stop being effective, they—the mysterious, omnipotent, omniscient they— will doubtless come up with new medications, gene therapies, or as-yet-undreamt-of remedies to replace old and ineffective treatments.

  For just as science has come up with vaccines and antibiotics for measles, diphtheria, smallpox, whooping cough, polio, pneumonia, typhoid, and tuberculosis, so, people tell me, it will come up with new cures for virtually all our remaining illnesses—for heart disease, cancer, multiple sclerosis, schizophrenia, clinical depression, AIDS, et cetera. When I mention new and reemerging diseases—E. coli, ebola, malaria, tuberculosis, hospital-acquired staph—people acknowledge their existence yet talk of them as if they are, in their danger to us as in their geography, distinctly remote. (Consider, though, that 70 percent of hospital-acquired infections now involve drug-resistant organisms, and that in metropolitan New York City alone, in 1995, 7,800 patients acquired drug-resistant staph infections during hospital stays, from which 1,400 died.*)

  For friends and family in the months following surgery, I seem to be living proof that science, in the guise of technology, will, like God, always provide. My initial reading and research, however, along with conversations with Rich, Jerry, Phil, and Arthur, begin to tell me another and quite different story.

  The advent o
f the germ theory of disease in the late nineteenth century, along with early successes in the management of infectious diseases, encouraged a faith in medical science that was grounded not in clinical experience but in laboratory research, which research was grounded in the late-nineteenth- and early-twentieth-century assumption that disease was defined by some biological defect or anomaly taking place in an otherwise normal human being, and that for each such specific abnormality we have or will discover a specific medical treatment that will cure it.

  In our time such beliefs—beliefs that, as one doctor writes, have downgraded “the importance of wisdom and experience in favor of spurious objectivity” and that have effectively devalued clinical judgment and the interaction between doctor and patient—are constantly encouraged in both the popular media and in direct-to-consumer marketing by drug companies.*

  This, for example, from a Time magazine preface to a Special Issue, The Frontiers of Medicine (Fall 1996): “Throughout history, bursts of knowledge—the Renaissance, the Age of Exploration, the Industrial Revolution—have created a succession of new plateaus for human achievement. Medicine is now experiencing just such a surge of enlightenment and advance, producing a parade of breakthroughs so flabbergasting that they are routinely described as ‘revolutionary’ or even…by the decidedly unscientific encomium of ‘miracle.’” Or this announcement, in large type on the front cover of New York magazine (February 7,2000): “We are going to see a global conquering of cancer in five to ten years.” Or this, in a full-page ad in the New York Times (October 3, 2000): “At Pfizer we’re determined to find the cures of the future. A cure for your father’s Alzheimer’s, your sister’s heart disease, your best friend’s diabetes. A cure for the ailments that touch all our families. To help create this better world, we’ve decided to create an even better company…”