Open Heart

by Jay Neugeboren

  “Yeah,” Phil says. “So after ten years I just called him up. It was on Yom Kippur, and he and Paulette were living in New York then, and I called to tell him that if in any way I did anything to offend him that I beg his forgiveness, because it was the Day of Atonement, and this is what you do.”

  “You did?” I say.

  Although, like Phil, I was taught that this was what one was supposed to do on the Day of Atonement—that God could forgive us for sins committed against God, but that only other people could forgive us for wrongs we had done to them—I cannot remember knowing anyone who had acted so literally on this rabbinic law.

  “Yeah, I did,” Phil says. “So then he said, ‘Oh let’s get together!’ and when we got back together he told me about what had happened to him after he came home from Vietnam, that it was almost like a psychiatric break, and we became friends again, and it was like we never missed a beat.

  “So I feel like I’m in the same relationship with Rich and Jerry now that I was in high school, and I think it’s because we have an underlying understanding of what we are—there’s a common cauldron and experience we share—and each of us has succeeded in some way, and none of us has regrets.

  “None of us had fathers who said, ‘Look, you take over the garment business after me.’ We all knew we had to make it on our own. None of us were trust fund babies, and that was reassuring even though I resented it then. Because I look at us now, and I see how we made our way based on who we were then. Everyone did as best he could with what he had, and I don’t think any of us would have changed anything.”

  “Nothing at all?” I ask.

  “Well, I would have liked to have had less tumultuous marriages maybe—to have been smarter at that, at relationships—marital relationships.”

  We talk about patients I’ve seen with Phil earlier in the day and, especially, about Beth Granger. I had last seen Beth in 1988, when she was lying in a bed at St. Anthony Hospital, in a coma. She was seventeen years old (a year younger than my daughter Miriam at the time), a junior in high school—an exceptionally pretty young woman, with long silky blond hair, large blue eyes (closed except when Phil opened them)—and while Phil examined her, tapped on her chest, talked to her and shouted at her, he told me he did not know whether or not she was ever going to wake up.

  Phil referred to her as “Sleeping Beauty,” and in the weeks and months following this visit, he would call me, usually on his way to or from work—the way he still does, several times a week—to report on Beth’s condition. (“Remember that girl we saw at St. Anthony—the pretty blond girl in a coma—Sleeping Beauty? Well, this morning…”) What I found especially chilling at the time was the contrast between Beth’s outer condition—her exceptionally serene appearance (the accident had spared her face)—and her inner condition, potentially fatal, about which we knew so little.

  More than 50 percent of all traumatic brain injuries in America result from car accidents, Phil tells me, and more than 50 percent of these cases are alcohol-related. In some instances, the patient is the only survivor; some teenagers who are in comas when I visit them do not recover—they either die or are condemned to marginal lives, mentally and/or physically, forever after.

  “I could never own a liquor store,” Phil said to me the first time I went on rounds with him in 1998. I saw five or six of Phil’s patients that day—some of them grotesquely injured and disfigured: suffering from missing and maimed limbs and body parts, from horrendous damage to their skulls and faces, and with tubes and wires going in and out of all parts of them—before the floor began to rise, darkly, toward my face. I excused myself, walked into the hallway, found a chair, sat, and put my head between my legs.

  “I forget that you’re not used to this,” Phil said to me a few minutes later, his arm around my shoulder. (On subsequent visits, I have done somewhat better, and have usually been able to make a complete set of ICU rounds before becoming faint.)

  Going on rounds with Phil—after we visit the Trauma Center we go to Craig Rehabilitation Center, to visit with people who are in various stages of recovery from trauma—I never cease to be amazed by the fact that he does what he does virtually every day of his life, and that, as with my other friends, the disease and misfortune he has to deal with rarely seem to dim his spirits or his optimism.

  On any given day, however, the sadness of what he sees can get to him. Thus, his call to me late one afternoon on his way home from work when, without preface—not even his usual “Hey Neugie—it’s Phil!”—he just started in talking.

  “Oh, I had a very hard day today, Jay,” he said. “Very hard. Yesterday I was talking with this young woman—she’s twenty-two years old, and she came in with a brain injury—she fell while horseback riding—and today she’s dead.

  “Yesterday she was confused and disoriented, somewhat agitated, but she was talking, and moving all her parts, and following commands. So we did a CAT-scan and saw that she had some bifrontal brain bruises. We observed her—restrained her for her safety: she was drowsy and tried to go to the bathroom on her own—and then she had a seizure-like activity, and her pupils were dilated. An hour later she had another seizure and we did another CT-scan, and there were no marked changes from the initial CT.

  “I mean, she was stable all day yesterday, then today she went into sudden and irreversible brain swelling, which is a known but rare complication of brain bruises in young people.”

  Phil was silent for a few seconds. Then: “I’m very experienced, you know, and for a young person to die like this, it’s just devastating. I didn’t expect it, and I wouldn’t have done anything different. We did what we could to reverse the brain swelling—medications—but nothing helped.”

  That night, after Phil arrived home, we talked again, and we did so frequently during the next few weeks, and it was as if this young woman was the first patient he had ever lost. He was inconsolable.

  “The problem we have is with anything that causes swelling of the brain,” he explained during one of our talks, “because when the brain swells, it pushes on the brain stem and that’s why all our treatments are to prevent an increase in swelling.

  “The brain looks like a cauliflower, you see, and when we’re young it’s made up mostly of coral-like indentations—sulci—and small empty spaces. As we get older, the brain shrinks, and there are more empty, fluid spaces—less tissue—so you have more slack, and if there’s a bruise, say, the swelling has room to expand, and you’re usually okay. The skull’s a closed box, with three elements—the brain, spinal fluid, and blood—and with a young person, it’s very tight in there, and we watch out for anything that makes it tighter. When the swelling becomes too great, the pressure affects the brain stem, and when the brain pressure gets too high it impairs the ability of the heart to perfuse the brain—to get blood and oxygen into it—and we get no flow. When the pressure in the brain’s greater than the heart’s ability to get blood into the brain—greater than the blood pressure—you’re deprived of blood and oxygen, and this is why some young people die from just what starts out as moderate brain injuries.”

  When Phil was explaining things to me, he sounded like the guy I usually talk with. But when he talked about the young woman who died—“This is terrible,” he said again. “It’s tragic. I mean, what do I say to her parents?”—he sounded like a very young person himself—distraught, helpless, bewildered.

  Beth Granger, the young woman who, a dozen years before, had been in a coma, suspended between life and death for nearly three months, has come to Phil’s Denver office with her husband Tom and their daughter Samantha. Phil’s consulting office, though considerably smaller than his Greenwood Village study—about seven feet by nine feet—is as un-self-consciously disorganized as his home office. A large LeRoy Neiman print of Willie Mays, a black-and-white photo tucked into the corner of the frame, takes up most of one wall, surrounded by prints, diplomas, neurological charts, and assorted photos (some of Phil’s ranch and llamas). When p
atients sit across from Phil, I notice them stare at the clutter on his desk in a mixture of perplexity, amusement, and awe. How can this brilliant, busy doctor maintain such a diverse range of interests—sports, Judaica, the American West, archaeology, geology, lightning (Phil belongs to the Lightning Data Center, an organization, founded by a neurologist and two meteorologists, that meets on the second Friday of each month)—and, equally puzzling, how can he cram so much stuff into such a small space?

  Phil had been at Beth’s high school graduation, and at her wedding—she is now pregnant with her second child—and I talk with Beth about having seen her when she was in a coma. I’m surprised, I say, that she doesn’t remember me.

  Beth laughs and tells me she doesn’t remember the accident at all, but knows that the car she was in rolled over, that she was thrown from it, that her best friend, in the car with her, was killed, and that she was in a coma for nearly three months. Her short-term memory and her hearing have been permanently impaired, but, she says, gesturing to her husband and daughter, she feels very blessed to be here, and to have the life she has.

  Me too, I say, and Phil tells her, briefly, about my surgery. Then he leaves, and Beth and I talk about surviving, and about feeling that we are the lucky ones—“Because I came so close to death,” Beth says, “I appreciate life that much more.”

  After her recovery, Beth attended college and hoped to become a social worker. “But I learned that society is not set up for people with head injuries,” she says, “and the most difficult thing for me, during my recovery, was being isolated from people my own age.

  “My parents were wonderful—they were there for me every day, and for everything I needed—and when I was well enough to leave home, they took me to live in this Transition Living Center.” She shivers, closes her eyes. “But when I saw it, I said I’ll kill myself or run away before I’ll ever live in a place like this.”

  Tom tells the story of how they met—he had been in a car accident too, and one day while he was at home recovering from his injuries he saw Beth on television. “She was talking about her illness and her rehab, and I fell in love with her right then,” he says. “There she was, this beautiful woman and she had a head injury like I did, and I thought, ‘Hey—maybe we can get together.’ So I called the TV station, and—”

  “—and then came the famous one-thing-led-to-another,” Beth says. She and Tom show me pictures from Beth’s high school graduation, and from their wedding, and they tell me about the house they are in the process of buying.

  Tom works twenty hours a week in his family’s floral business, and Beth works for an organization that helps people who are in recovery from brain trauma. “What’s best,” she says, “is what Dr. Yarnell taught me—whatever is most normalizing. Isolation is as bad as—no, it’s worse—much worse than the deficits you may have from the trauma.”

  When she says this, her daughter Samantha climbs onto her lap. “My life seems too good to be true sometimes—though I don’t feel this way every day,” Beth says. “That wouldn’t be real. But when I first came to, you know, after the accident, I couldn’t walk, or talk, or hear—I was completely deaf for a long while, and what I thought was happening was that I had already died and was watching it all—my family, the hospital room, me— from up above—from heaven.”

  When I tell Phil about my conversation with Beth, he responds by saying the kind of thing he often says about his work: “You see, I’m merely a caretaker. I try to help patients make the most of what they have, but sometimes they say it’s too hard, and that they’re completely dependent on someone to turn them over in bed or prop them up, and they can’t answer the phone, or if there’s a fire, they can’t move unless someone moves them. Some patients get depressed and don’t want to be here, and just say it’s not worth it, the heck with it.

  “And it’s frustrating to work very hard and get a result where the person’s totally disabled—or in a vegetative state—for the rest of their lives. Their eyes may blink, but they don’t seem to understand their environment, or they can type a little with one hand on a small computer to say, ‘I’m okay. Hello,’ and they need twenty-four-hour care, and you wonder. I mean, you wonder if they would have wanted to be saved if they knew what was coming—or if you knew, maybe you wouldn’t have worked so hard to save them.

  “But no one knows, you see. So you give everyone the best shot you can, and hope for the best. And you saw the people today—some of them were grossly debilitated. And then there’s Beth and her husband—but if they didn’t have parents who had a business that Tom could go into, they wouldn’t be talking about buying a house with a yard.”

  Phil repeats what he has said to me several times: that a family support system is the most important element in the rehabilitation of neurological illnesses—and that his biggest worry wasn’t about my heart, or the surgery, but about the fact that I didn’t have a wife or companion, so that if I came out of surgery with a major disability, who was going to be there to help me, and to manage my affairs?

  “I mean, if you have to live with a debilitating illness and you’re not rich or don’t have the world’s best insurance, where’s your means of support? They don’t kill you, but they put you in a rundown nursing home where there’s barely enough help, and let’s hope your constitution is strong enough to make it. And the help there turns over quickly, and you might meet an aide you strike up a friendship with who’s good-natured and helps you. I mean, you remember that young woman who was living with the man who was a quadriplegic? As soon as she left him, he died. So that’s the real world.

  “But I had two thrills today,” Phil says then, and his face brightens. “Two patients spoke to me who never had conversations with me during the entire month I’ve been taking care of them. I had three conversations with that boy you met who was paralyzed from the night he had a car wreck. And with that boy who was sitting and playing cards—the one who fell off a cliff while mountain climbing. I never had a conversation with either of them before today—and, as with Beth, that’s a thrill for me—the highlight of my week.

  “And I sent one lady home! That’s the really good part of my life. I get to send them home. So I feel lucky, because I get to do a kind of work that’s meaningful every day, and there’s always new things happening and something to learn.”

  I listen to Phil talk about his work, and why it remains ever fascinating to him, and I think of the fact that his attitude—his love of his vocation—is, alas, becoming less and less common. In a 1999 study of young California physicians (those under forty-five), for example, the authors report that in 1996 “only 61 percent of primary care physicians said that they would go to medical school again,” this figure “down from 79 percent in 1991.” Among specialists during these same five years the proportion fell from 68 percent to 63 percent.

  Other surveys report similar findings—that young physicians’ “perceptions of a career in medicine may be both more critical than those of other professionals and worsening over time.”* High medical school tuition, huge educational debts, long hours, high malpractice premiums, growing corporate influence, and, especially, the loss of autonomy are the major reasons young physicians give for their dissatisfaction, and for saying that, given a choice, they would not choose to become doctors again.

  And many of the autonomy issues relate directly to a doctor’s freedom to make decisions about, and to care for, patients. For example, the report on young California physicians notes, only 67 percent of these doctors believed they had the freedom to care for patients who could not pay, and only 64 percent indicated they had the freedom to care for patients who required heavy time and resource commitment—these levels down from 83 percent in 1991. “The psychic toll of declining satisfaction with practices and careers,” the authors comment, “may reduce even the most dedicated physicians’ ability to function at their best.”*

  Like my other friends, Phil—his nickname is “Yago,” from Yagolnitzer, his family name until h
is father changed it when Phil was in the seventh grade (“I had mixed feelings—I felt like I lost part of my identity, but I also was happy not to have kids make fun of me on the first day of classes every year when the teacher called my name”)—did not start out intending to become a doctor. He entered Cornell, in the fall of 1955, as an engineering student.

  “I always had an interest in learning how the human body works, and I didn’t like mysteries,” he says, “so I thought that if I would understand it, it wouldn’t be a mystery to me. But I didn’t like the idea of the pre-medical route, which seemed too conventional. Engineering seemed more scientific.

  “So I was in the department of engineering physics at Cornell, but I saw that the profession was mainly either the business of running manufacturing outlets or you could be a pure scientist, only I didn’t think I was good enough to be an independent pure scientist. So medicine seemed a combination of technical knowledge, and also being able to make a contribution to helping people.”

  I say that Arthur wonders sometimes if this desire we all have—to be of service to others, to make a contribution, to leave the world a better place than we found it—is as purely altruistic as people think, or whether, instead, it simply comes from our compulsive need to be productive—from our Brooklyn brand of Jewish Calvinism.

  Phil shrugs. “I don’t know about that,” he says. “Maybe. But I know that by the third year of engineering school, I decided to look into going to medical school, and I took a few extra courses, and then I applied to medical school and got a scholarship, so instead of finishing the engineering degree—it was a five-year program—after four years, I went to medical school.”

  “You never got a college degree?”

  “No. I never got a college degree.” He laughs. “My mother was upset, because she said what would happen if I didn’t like medicine, and all I’d have was a high school diploma. I couldn’t even be a high school teacher, which she thought was a very noble profession.