Open Heart

by Jay Neugeboren

  When I call and tell Miriam what’s happened, she is silent for a long while, and despite my efforts to keep things as low-key and optimistic as possible, says little.

  Eli responds warmly. An hour or two after our talk, he “leaves a lovely loving message on machine,” I write, about “how he is thinking of me, etc., and how i have a good heart even if…”

  “Yet when he calls back at midnite,” I note, he is “upset somehow bec mom’s mom and dad died of heart stuff, and your parents did (me: my mother’s still alive), and aaron has his problem…as if: he has recd a genetic bad deal.”

  “I’m still here,” I write. “A long day, and what to say? I am getting used to being a man who has a v imperfect heart living within him. Good talks with Jerry and Rich, and by tonite, they will have a plan for me. Like the notion that my old friends will be talking with one another about the Neug…oh my but I do bask in their affection and regard for me!”

  Between errands, talking with my children, and talks with Rich and Jerry, I get other things done: I work on a review of a book about families coping with mental illness; I complete a report to a foundation that awards fellowships to fiction writers; I read a new novel by my old friend Jerry Charyn (“vintage Jerry”); I take a nap.

  Yet all the while I am at home, working most of the time in my third-floor office, each time I hear a car approaching I find myself going to the window to see if the car is stopping in front of my house or turning into my driveway (I live on a quiet, dead-end street of private homes), and I realize, despite my having told her I didn’t think it was a good idea for us to get together today, that I am hoping I will see Ellen get out of her car, smile, and wave up to me.

  Early the next morning Jerry calls and says he and Rich have decided it is best for me to come down to Yale, where, in his words, he can be an ombudsman for me.

  “Who do you know in Boston?” he asks. “You’ll get lost in the system, but if the staff at Yale knows it is accountable to me, that will maximize your chances for getting the best possible care.” He tells me I will be receiving a call from Dr. Henry Cabin, who is his cardiologist, and with whom he has already talked.

  My friends Sam and Elaine Rofman drive in from Boston for the afternoon, and we go to a UMass basketball game together. UMass wins, and afterwards, walking across campus and up a steep hill toward the parking lot where I left my car, Sam—an M.D. several years younger than I am—is soon out of breath and cannot keep up with me; he laughs and assures me again, as he has been doing for the previous few weeks, that I have nothing to worry about.

  Back home, there is a message on my answering machine from Dr. Cabin, saying he is looking forward to meeting me, telling me he will be doing the angiography, asking me to bring along the results of the EKG and the film of the echocardiogram, and alerting me to the fact that his secretary will call on Monday to set up our appointment.

  The following morning, at exactly 9 A.M., Dr. Cabin’s secretary calls and informs me she has scheduled me for the angiogram at Yale-New Haven on Thursday morning. She walks me through everything else: the blood work they need to do, where I am to go, what I should bring, and, should they find significant blockages, their plan to go ahead with angioplasty and stenting immediately following the angiogram.

  Phil and Arthur call, and they each talk with me for a long time. I telephone a few other friends, including Doug Whynott. It wasn’t a rotator cuff problem, I tell him. A half-hour or so after we talk, his wife Kathy calls. She and Doug offer to drive down to Northampton. They can stay over at my house, she says, or, if I prefer, I can drive up to Walpole (New Hampshire) to be with them. Doug also offers to drive me down to New Haven on Thursday. They are, Kathy tells me, stunned by the news.

  Rich calls and tells me he is “thrilled” to see that there are no “Q waves” on my EKG (it took three calls and three days to get Dr. Flynn’s office to fax it to him), which means that there is no evidence of any serious localized abnormality, of a previous heart attack, or of any significant damage to the heart muscle itself. This is very good news, he says.

  When Eli calls again, he tells me that he and his sister have been talking frequently, and that Miriam cried for a long time the night before. When I give him the good news Rich has given me, he seems reassured; still, he wonders if maybe after this I will “slow down a bit,” and he talks to me about how I don’t realize how hard I work, how many responsibilities I have, how busy my life is.

  I spend the next few days taking care of things at home and at the university. I talk frequently with Rich, Jerry, Phil, and Arthur. I write in my journal, work on my novel, imagine various scenarios (“my prediction: they will find some blockage that has been inducing the discomfort/cramping in back…will angioplast it, and within 2 weeks, i will be swimming”), and think more about living alone than I do about my heart and what might be wrong there. I think, too, about what I have learned while working on Transforming Madness— how for people who have been afflicted, long-term, with a serious mental illness, and for those family members and friends who care for them, the isolation in which they too often live becomes at least as deadly as the condition itself.

  When I get a copy of the echocardiogram results, Rich interprets them for me. That my ejection fraction is within a normal range is an excellent sign, he says, for it means the heart is basically sound. “Also,” I write in my journal, “he thinks the general weakening [cardiomyopathy] may be paradoxical good sign: the heart slowing down so as not to rupture—recognizes that oxygen and blood not flowing as they should, and so self-protects [by pumping with less force].”

  “Wake feeling queasy, back cramping a bit: nerves for sure—along with side effects, i suspect, of the 2 new meds. dont like that stuff,” I write on the morning of February 10, 1999. “wake feeling v slow—moving with measured pace, and with sad heart.”

  “Strange too: the emotions dont transform to words this morning,” I tell myself, “but this is not bec there is a dearth of feeling, i am overwhelmed by feelings, by my mortality… washed away by both sadness and fear…and then, at times: by goodness—the kindness of others, the good luck despite the bad news: i have survived whatever happened, and this is an area of medicine that is wonderfully advanced, etc…and i should be able to move into a few more decades of good and rich life.”

  “Make calls here and there,” I write at the close of this last entry before the drive down to Jerry’s house, “love talking with my old buddies—what bright, sweet guys we were and are! me, phil, rich, jerry, arthur…”

  I spend the day taking care of business: get the book review and the foundation report in the mail; teach my classes at UMass; talk with students; have a meal with a former student who is in transition between teaching and acting jobs; revise a chapter of my novel; and write out a note to my children about what to do and where things are and who will take care of what in case I don’t return. I leave the note, in a sealed envelope, to one side of my desk.

  “So: will tend to business re the book, re novel, re packing—leave here at 6 [P.M.], for CT,” I write, “and the day will pass, and by this time tomorrow, my guess, i will be in hospital, recovering from an angioplasty that will give me many more good years, blessings, neug. we love you.”

  Only when I wake from the anesthesia and Dr. Cabin shows me the results of the angiogram and tells me he wants me in surgery as soon as possible, and only when I learn that I am at least as gravely ill as I’d been believing I was—only then: when I know— do my fears depart. Only when I am sitting on a table in the room where Dr. Cabin has performed the angiogram do I feel, for the first time in several months, not merely relieved, but eager to get on with things: with the surgery, with whatever follows from surgery—with life! I am not only, as Jerry will later say, positive and optimistic, but I am also feeling a new and wonderfully liberating sensation: at peace in a way I don’t quite understand. All will be well, I think—not despite the surgery and what has made it necessary, but because of it—and I kn
ow this as surely as, for the previous few months, I have feared the opposite.

  In that small aseptic room where my clothes lie in a neat pile on the floor, and in the hours that follow, when I move from one hospital room to another, I take stock of things, and think: I would love nothing more than to hold on to the life that is still mine and that, when all is said and done, I don’t have a great desire to leave. I don’t want to die, but if my time here is near its end, and—the thought occurs in an easy way, as if it is merely a fact like others: whether it will rain or snow, or whether UMass will or won’t win its next basketball game—if I do not, tomorrow, wake from surgery, that seems all right too. I find myself without regrets, whether for things done, or not done.

  And when, the next morning, I am readied for surgery, and when I am wheeled into a narrow hallway outside the operating room, I am acutely aware of being neither depressed, afraid, nor alone.

  I recall feeling vaguely sleepy, somewhat nervous, and distinctly exhilarated—bypass surgery is simply high-tech plumbing, I tell myself: something doctors are experienced and proficient at, so let’s do it as well and quickly as we can—and I recall, too, while I lie under a sheet, being fascinated by the way a member of the surgical team attends to my left arm and hand: securing the arm to the operating table, palm up, while taping my fingers down in what seems a weirdly intricate way—some fingers bent upright at curious angles, others fastened down as if to get them into position for forming a tricky chord on the neck of a guitar. (What the man is doing, I realize afterward, is preparing my arm for the removal of its radial artery, which will be stitched into my heart.)

  I recall how drab and institutional the corridor we wait in is, how numerous, efficient, and busy are the people on the surgical team—nurses, aides, technicians, surgeons, anesthesiologists, all robed in lime-green sterile gowns—involved in the surgery itself, and with what incredible swiftness—like life itself?—time seems to move. Neugie, I remember saying to myself, this is not a first draft.

  When I revisit this moment, though, what I see first of all and most of all is the way my daughter Miriam, closest to the gurney I am lying on, follows me with her eyes. Her brothers and her fiancé Seth beside her—Jerry, in hospital lab coat, standing slightly behind—Miriam stares at me with the steadiest, saddest, most loving of gazes, so that, as I am rolled away into the operating theater, my spirits, helped along, doubtless, by medications, soar, and the feeling of calm and readiness—the faith that all will be well—spreads through me. What can be amiss, I think, with having lived a life wherein one ends without regrets and with the unwavering affection of those one holds dearest?

  In the weeks and months that follow surgery, when I consider how and why it was, without typical symptoms or risk factors, I nearly died—and when I explore these questions in conversations with my friends, and through the reading and researches our conversations lead to, I am, again, surprised by what I find.

  My life has, blessedly, been saved by what is generally considered the most spectacular success of twentieth-century medicine: coronary bypass surgery—the ability doctors have to open my chest, shut off my heart, harvest veins and arteries from my own body, use them to bypass occluded arteries, start my heart going again, and return me to the world in better condition—and with, in all probability, many years of healthy, productive life ahead—than I was in before they put me to sleep.

  The advent of what is often called heroic medicine—high-tech life-saving and life-prolonging biomedical interventions such as open-heart surgery, organ transplants, genetic engineering, and neonatal procedures—is surely, in many instances, as in mine, not only welcome, but so technologically dramatic as to seem miraculous. In the lives of those who are the beneficiaries of these successful interventions—adults who without transplants or bypasses would otherwise die or live out their lives as invalids; children who would otherwise perish or be permanently disabled—their effects are, day to day and year to year, quite real. (That this is so gives tangible proof to a favorite saying: “The rabbis tell us that a person who does not believe in miracles is not a realist.”)

  Yet what I begin to discover after surgery is that when it comes to life and death in matters medical, what has made and will probably continue to make the greatest difference for most of us remains distinctly low-tech.

  This is a revelation to me, as it is to most people I talk with during and after my recovery. But it is not news to the four friends who attend to me through this period of my life.

  6

  The Ponce de León Thing

  PRIOR TO 1940, PHIL explains, the primary function of medicine was the diagnosis of disease. Prior to 1940, in fact, we were helpless to ameliorate most conditions, especially the many lethal and debilitating childhood illnesses. Before 1940, what doctors refer to as their “therapeutic armamentarium” was hardly impressive. Except for a very few medications (digoxin, thyroxine, insulin), immunization for a handful of infectious diseases, and some surgical procedures, doctors had little understanding of the causes of most diseases, and little wherewithal to alleviate their effects. “Indeed,” as Gerald Grob notes in the prologue to The Deadly Truth: A History of Disease in America, “some of the therapies deployed before 1940 were very likely harmful.”*

  Sixty years later, however, there are few diseases for which something cannot be done to alleviate symptoms and to prolong life. Although we have made extraordinary advances in the treatment of diseases such as AIDS, of childhood illnesses, and, as in my case, some of what were formerly life-ending conditions, when it comes to those diseases that currently account for the greatest portion of our morbidity and mortality—heart disease, cancer, diabetes, the major mental illnesses (schizophrenia, depression, bipolar disorder), many infectious diseases, and the vast proportion of other long-duration illnesses—we continue to remain largely ignorant of their etiologies.

  The essential point, my friends emphasize, is that while we have become wonderfully efficient at controlling the symptoms and progression of the diseases they commonly encounter in their clinical practice—heart disease, AIDS, stroke, depression—we have made much less progress in understanding the underlying causes of these diseases and, therefore, in being able to prevent or to cure them.

  “The great problem with neurology, for example,” Phil says, “is that we don’t know how to help the brain heal itself. All the other organs and body parts can heal themselves, and we can, to varying degrees, aid these processes better than we used to. But not the brain. Our knowledge of the brain is way behind our knowledge of, say, the heart and the circulatory system.”

  My readings in the history of disease, and of medicine, confirm what my friends tell me. David Weatherall, professor of medicine at Oxford and a specialist in human genetics, puts matters this way: “While genuine progress has been made in our understanding of how to manage heart disease, stroke, rheumatism, the major psychiatric disorders, cancer, and so on, we have only reached the stage at which we can control our patients’ symptoms or temporarily patch them up.”

  Reiterating what Lewis Thomas wrote about half way technologies more than a quarter century ago, Weatherall continues: “Our lack of success over the last fifty years, in getting to grips with the basic causes of these diseases, combined with our increasing understanding of the pathological consequences of diseased organs, has bred modern high-technology medicine.* Much of it is very sophisticated and effective at prolonging life, but it neither prevents nor cures many diseases.”

  Like my friends, Weatherall is acutely aware of the many gains we have made. “Our ability to patch up patients and to prolong their lives seems to be almost limitless,” he states.* Still, like my friends, he also notes a curious anomaly—that the more we can do to enhance and prolong life for those suffering from diseases whose underlying causes we do not understand, the more this seems to lead to both a “dramatic increase in the cost of medical care” and “a dehumanizing effect on its practitioners and the hospitals in which
they work.”

  This dehumanizing effect on doctors and the institutions in which they work—the devaluation of those practices that enable a doctor to know and understand patients in their uniqueness, and, when treating their patients, to have the wherewithal and time to be thoughtful in their judgments—is not only lamentable for reasons we usually term personal or humanistic but, as my friends contend, profoundly inimical to the practice and efficacy of medicine itself.

  “Insurance companies don’t blink much when it comes to lab tests or procedures for my patients that cost hundreds of dollars,” Jerry explains. “But they won’t pay, or will pay only minimally, for me to sit with a patient for a half-hour or an hour and take a thorough history, or to sit with a patient and talk about the patient’s problems—or the patient’s progress. And if I don’t know my patient well, and my patient doesn’t trust that I know him and care about him, then I can’t be the kind of doctor I want to be and should be.”

  Although taking a thorough history and listening attentively to a patient, like caring for people with chronic and disabling diseases, or providing public health measures that help prevent disease, may not seem as heroic or glamorous—as sexy—as a bypass, a transplant, an artificial heart, a reengineered gene, a new “miracle” drug, or some other biotechnological innovation, it is prevention and rehabilitation that, these past hundred years, have made and continue to make the greatest difference in terms of both morbidity (how sick we are) and mortality (how long we live).

  Before the advent of the Salk vaccine in 1955, the word polio would spread in whispers through our world each summer: news would reach us that a child we knew—a cousin or distant relative, the son or daughter of a friend, a boy or girl with whom we went to school or to summer camp—had contracted the disease, and would most likely be crippled for life.