Open Heart

by Jay Neugeboren

  “I had been a very honored man in Nigeria, and when I came back I lived on the Lower East Side, in an apartment as big as this rug”—he points to a ten-by-twelve-foot Persian rug on the floor—“for thirty-five dollars a month, and I went back to the grind of being a resident—to being on every other night—where I was low man on the totem pole.

  “But I was determined to finish my training, and my intention was to prepare myself to go back to the developing world. I wanted to train in infectious diseases and public health, but at the time there was no opportunity to do this in New York, where there was only one school of public health, at Columbia, but it was separate from the medical school, and I had begun to have this vision of merging the two.

  “I made inquiries, and I found out that there was a new program in Boston where you could train in infectious diseases while also getting a master’s in public pealth at Harvard. So I went to Boston.”

  Jerry sighs. “I never really made it back to the developing world—though I still have hopes of doing so—because this was a period when we were at the beginning of community medicine, and after I arrived in Boston, I started getting involved with neighborhood health centers and clinics. I worked in Roxbury, with poor blacks and their families, and also with the Black Panthers. Did you know that?”

  I say that he told me this before, but that he hadn’t given me a lot of details. He closes his eyes as if to see again the world he knew three decades ago, and when he does, I see the young man I knew nearly fifty years ago.

  How can it be, I wonder, that this guy I used to go to parties and basketball games with (Jerry was official timekeeper for our high school games), whom I hung out with on Flatbush Avenue, rode the trolley car and subway with, went to classes with, and played ball with all through high school and college—with whom I’ve spent hundreds of hours talking about sports and politics, about girlfriends and wives, about our friends, our children, our work, our hopes and dreams and hard times—has become this remarkable doctor: a man who fairly breathes optimism into the air around him, and a man who, during the epidemic outbreak of AIDS in the mid-eighties, was attending the funerals of dozens of patients every month in a time when not one of the hundreds of patients he treated recovered.

  In 1982, early in the AIDS epidemic, Jerry alerted the Centers for Disease Control to the fact that AIDS could be transmitted hetero-sexually—that the sexual partners of heterosexuals with AIDS were in danger of contracting it.*

  “We had a few male patients who had female partners,” he recalls. “The female partners were not drug users, so if they were at risk it was through sexual transmission, and I had one of the partners in clinic, and I started to examine her. I put my hands on her neck, and I felt these huge lymph nodes and I thought to myself, ‘Oh shit, she’s got it—it’s the end of the world.’ That was the way it came to me. I mean, there are a limited number of gay men in the world, I reasoned, but many many more heterosexuals.

  “Did you ever see Wild Strawberries?’ Jerry asks. “Well, there’s a scene in the movie where the old doctor’s walking in a town, and there’s a clock that doesn’t have any hands on it—typical Bergman—and there’s a hearse that drives off and a coffin falls from it. It was very disturbing—and I had a dream that was similar. I was walking on Jerome Avenue in the Bronx, near Montefiore, and this train is going by overhead, and the green grocer stalls are all out, and there are lots of cars and trucks—but there are no people. They’ve all died from AIDS.”

  Jerry was also the doctor whose research team, at Montefiore, made the discovery that HIV was not transmitted by casual and close interpersonal contact, and that therefore health-care workers tending AIDS patients were at little or no risk, not even from the accidental needle pricks that had been causing terror on the wards.* “The transmission of HIV,” he concluded in the second of two articles he published in the New England Journal of Medicine in 1986 and 1987, “occurs only through blood, sexual activity, and perinatal events.” Moreover, “the available data indicate that HIV transmission is not highly efficient in a single or few exposures,” so that “the widespread dissemination of HIV is more likely the result of multiple, repeated exposures over time by routes of transmission that are strongly related to personal and cultural patterns of behavior—particularly, sexual activity and drugs.”

  What pleased Jerry most about these discoveries was their potential to reduce the epidemic of fear that had followed upon the epidemic itself. In this instance, as in others, his boundless optimism was matched by his clear-eyed realism. The fear of catching AIDS from someone at home, at school, in an office, swimming pool, or any other public place turned out to be unfounded; those who had contracted AIDS, therefore, did not have to be ostracized or quarantined.

  “Although we are confronted by a public health problem of potentially catastrophic dimensions,” he wrote at the time, “it is essential to appreciate that unwarranted fears of HIV transmission have compounded the suffering of young men, women, and children infected with HIV and have blunted an appropriate societal response aimed at reduction of transmission.”*

  Just as, for Jerry, the patient is always more than his or her illness, so each medical student he works with is always more than the sum of his or her clinical experience and expertise.*

  After a patient with AIDS died one day, I was with Jerry when he took the young resident who had been the patient’s doctor aside, and reviewed the case with her. “You worked very hard for her,” he said, simply and quietly. “Thank you.”

  Later that day, he invited a young Chinese medical student, Karen Xiaoda, to talk with him privately. She was a brilliant student, he told me, and he had noticed that she was somewhat distracted and tired. When they met in a room used for AIDS patients to visit with their guests, and Jerry asked her how she was doing—he was concerned, he said, because she seemed unusually exhausted—she told him that yes, she was somewhat overwhelmed: her father had died during the past year, and now her mother, who was fifty years old, had breast cancer, and was in the Intensive Care Unit at a New York City hospital. As she talked with Jerry, she began crying, and Jerry put his hand on her arm (even before his discovery about the finite ways in which AIDS could be transmitted, Jerry had always been hands-on with patients and colleagues), and said, “You should be with your mother.”

  Karen protested, citing her studies, her work in the hospital. Jerry listened, then asked a simple question: “Where would you like to be now?”

  “With my mother in the ICU,” Karen said.

  “Then go there,” Jerry said, and told her she could make up the work some other time, that she should think only about being with her mother and shouldn’t worry about anything else.*

  On the drive back to Guilford that evening, Jerry told me that Karen’s situation reminded him of what happened when he was in his fourth year of medical school and his father was on a respirator, alone and dying.

  “I received the news of his death a half-hour before my final med school exam,” Jerry said, “and I bombed it. But I didn’t tell anybody about my father.” He laughs. “What—me have feelings? Me talk about my emotions with somebody? Me not show up on time—me not be responsible?

  “The dean asked me to come in and talk with him. It was my only poor showing in four years, he said. What happened? So I told him about my father, and he said I should have told him about it—should have let him know I was under so much pressure.”

  When Jerry walks into a hospital room to visit a patient, or when a patient enters his examining room at the clinic, I am struck each time by the slight, subtle shift in his demeanor—by how, starting with the patient’s hair, forehead, and eyes, his gaze moves slowly and carefully over the patient, as if, invisibly, to touch the patient with his eyes and, I assume, to take in all kinds of things—changes, symptoms, curious or troubling details, warning signs—even while he is engaging the patient, warmly and attentively, in conversation.

  I sometimes think of him, and I tell this to
the other guys, as being a kind of Brooklyn-born Jewish American Albert Schweitzer. He is a scrupulous and innovative researcher, a fine writer, a patient administrator (the part of his work he likes least), a gifted clinician and diagnostician, and a charismatic teacher who never pulls rank, and whose authority derives from his gentle, unaffected presence, and from his expertise.

  He has dedicated his adult life to those in need of his medical knowledge and skills—men and women who often have been stigmatized and abandoned by others—and he does so without sentimentality. (“You are going to see the bottom of the bottom of the human barrel,” he said to me on our way to his clinic the first time I spent an afternoon with him there.) But unlike Schweitzer (or, in our time, a man like Paul Farmer), he has done so without going into exile from the world in which he had grown up, come of age, and had been living.

  Jerry is also my friend of many years, and in knowing him, and writing about him, as of my other friends, I remind myself not to try to separate who he is as a doctor from who he is as Jerry, for if I do, I sense, I will err in the same way a doctor errs when he or she separates the disease a patient has from the person in whom the disease has made its home.

  Jerry lived in Boston from 1968 to 1981, where, at Harvard, he completed his training in internal medicine, after which he did a year of infectious disease training while also taking courses at the Harvard School of Public Health. He worked in Roxbury as a primary-care doctor, developed several community programs and neighborhood health centers, and was involved with the Medical Committee for Human Rights there, which was, Jerry says, “a kind of radical progressive health organization.”* He did this while retaining his affiliation with Beth Israel (Harvard Medical School), where he continued to teach in infectious diseases.

  “The Black Panther Party wanted to develop a health center and asked me and another doctor—an African American opthalmologist—if we would help them,” Jerry says. “We did, and I never felt any sense of discomfort in working with them. They were wonderful young people, and we developed a program with them, rented a trailer, and the Panthers put the trailer next to a housing project on land that had been cleared for 1–95. It was their political statement: that this was how land should be used—for health care, and not for highways to take people to the suburbs.

  “So we set up this clinic on abandoned land, and we’d sit there in the evening and a bunch of the young Panthers would come and take a cable out and plug it into one of the lampposts, and that was how we got our electricity. Every evening we’d see twenty or so patients from the neighboring projects, and we developed a program for blood pressure screening, tuberculosis screening, and sickle cell screening.

  “I taught the Panthers how to take blood pressure and do the skin testing for TB, and they would go out into the community and knock on doors and do the work. It was wonderful, and I loved it. They lived in a house donated to them by a Jewish doctor who had practiced in Roxbury and retired to Florida, and we’d go into the house, and it was sandbagged, and the windows were blocked off, and there were weapons around, and it was pretty scary.” Jerry shakes his head in disbelief. “But I did it! Sometimes when one of the Panthers was arrested, they’d call me and I’d go to the police station to make sure the person wasn’t beaten up. I’d be introduced as ‘Dr. Friedland from Harvard Medical School,’ and the cops would look at me like—‘What are you—nuts??

  “Gail was in terror too, and sure, I knew I was being used, yet I never felt in danger from the Panthers or the police. The police were smart, you see, and they’d drive past the clinic at night, but leave it alone. Still, it was strange, going back and forth—all you had to do was cross Columbus Avenue and you were in a different world. I mean, here you had what was probably the premier biomedical research institution in the world sitting right next to truly abject poverty.”

  It is late afternoon in the second week of August 2000—nearly two months after my return from Norway—and Jerry and I are in his administrative office at Yale. The office is long and narrow, filled to overflowing with books, articles, journals, and photos. His desk is piled high with folders, as are several tables. There are framed photos of Gail and their children and, on the walls, posters from international AIDS conferences. I remark on a new, large framed picture facing his desk: a poster of the U.S. postage stamp honoring Jackie Robinson—Jackie sliding into home plate—and Jerry says, “He remains one of my only heroes.” There is a framed New Yorker cover that depicts a paradisal New York—turbaned taxi drivers waving happily to each other, “WELCOME BACK DODGERS” on a banner strung across the middle of the street—and near to Jerry’s desk, a framed hand-lettered passage from Albert Camus’ The Plague:

  … so that he should not be one of those who hold their peace but should bear witness in favor of those plague-stricken people; so that some memorial of the injustice and outrage done there might endure; and to state quite simply what we learn in time of pestilence: that there are more things to admire in men than to despise.

  Nonetheless, he knew that the tale he had to tell could not be one of a final victory. It could be only the record of what had had to be done, and what assuredly would have to be done again in the never ending fight against terror and its relentless onslaughts, despite their personal afflictions, by all who, while unable to be saints but refusing to bow down to pestilences, strive their utmost to be healers.

  Jerry, who has returned a few weeks before from an international AIDS conference in Durban, South Africa, talks with me about how inspiring the conference was, especially the moment when Nelson Mandela appeared, and thousands of people burst into cheers, South Africans dancing and singing, “Nelson Mandela! Ga go no yo a swana na ye…” (“There is no one like him…He brought us our freedom.”)

  Jerry has written an account of the conference for AIDS Clinical Care, and has titled his essay “Breaking the Silence.”* He shows me the manuscript, which he has prefaced with an African proverb: “The best time to plant a tree is twenty years ago. The second best time is now.”

  The great significance of the conference, and the international attention it received, we agree, is that the world can never again claim to be unaware of the horrific extent of the AIDS epidemic in the developing world. “We know how to prevent HIV transmission, yet the pandemic continues to grow unchecked in most of the world,” Jerry writes. “Surely, lack of information can no longer be blamed for the worldwide shroud of silence regarding the pandemic’s magnitude.”

  Attending the conference, he tells me, has also confirmed his decision to return to South Africa during his sabbatical a year hence.

  In 1975, Jerry took a leave of absence from Harvard. “I liked being both in the Harvard medical school environment and in the black community,” Jerry says, “and I felt fortunate, and was able to lead this life for a while, but it took its toll, and I burned out. So in 1975, I took a leave of absence, and Gail and I wound up going to Israel.”

  Jerry found out about a man from the Harvard School of Public Health, Asher Siegel, who was helping to develop a new medical school in Beer Sheave that would attempt to integrate public health, clinical medicine, and basic science. Jerry and Gail left for Israel with a single suitcase—they had never been there before—and they lived in Beer Sheva, where Jerry was visiting professor at Ben Gurion University of the Negev, and where he taught infectious disease, which was not a recognized specialty in Israel at the time. It was a wonderful place, Jerry says (one of the wonderful things about Jerry is how frequently he uses the word wonderful)—innovative, chaotic, and with a pioneering spirit. He developed a curriculum for the treatment of tuberculosis that integrated clinical care and public health, and he found the experience enormously gratifying.

  After his return to the States, he continued teaching and doing clinical work at Harvard and in Roxbury, becoming, among other things, coordinator of clinical training for infectious disease at Beth Israel, Children’s Hospital, the Sidney Farber Cancer Institute, and Harvard Medical Schoo
l. The Black Panther Party gradually disintegrated, and in 1981, when a new chief of medicine came to Harvard and brought his own infectious disease people with him, Jerry decided to leave.

  “Life is not a controlled experiment,” Jerry says. “There’s no way of proving whether you went in the right or wrong direction. It was a very hard move—traumatic for us personally. We’d been in Boston for thirteen years, and had close friends there, and we were integrated into both the medical and political community. We also had three children by then—our first two, as you know, Elisabeth and David, were adopted from Colombia, and then we had Sarah—and they were one, two, and three years old. But we decided to start all over again in New York.

  “It seemed like an appropriate job for me, at Montefiore, and at Einstein—being involved with infectious disease and the training of doctors—and the first month I attended there, there were three patients who had this rare new thing called Pneumocystis carinii pneumonia that I had never seen before. Now, I’d been in Africa and the Middle East—there were lots of infectious diseases in Israel—and at Bellevue, and here and there and everywhere. And somehow I knew from the very beginning that this was something new and different and bad, and that it was going to be very big.”

  Jerry talks about how, sad to say, he was the right person in the right place at the right time: everything in his life, personally and professionally, had prepared him for the work that would consume him from this point on—he was an infectious disease doctor, he had trained in public health, he had been overseas, he had worked with poor people, he had thought for many years about ways in which biology was bound up with behavior and social forces.