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Open Heart Page 27

by Jay Neugeboren


  “But mostly I just wanted to be educated—and I wanted to get out of Brooklyn. I think it’s like being a good ballplayer. If you’re a good ballplayer, you don’t care where you play, and you can play at any level. So that’s how I felt about learning and, later on, about becoming a doctor.

  “My father pressed clothes in a dress factory—it was called ‘piecework’ because he was paid by the number of dresses he pressed—by the piece—and it was seasonal work, so he was unemployed a lot of the year, and he sat around and my mom yelled at him, and it was very disheartening because he was trapped, and he was a passive man who couldn’t figure out how to get out of the trap.

  “We always ate separately. The kitchen was too small so my mother prepared three meals—one for her two sons, one for my father, and one for herself. My brother Allen and I ate on TV stands. We never ate together unless there was a special event, and then we ate in the living room.

  “The bathroom was small too—it was so narrow that when you sat on the pot, the only way you could be comfortable was to keep your right leg over the side of the bathtub. Allen used to go upstairs to our aunt’s apartment to go to the bathroom. There was no air conditioning, one tiny bathroom for four people, waiting in line, no privacy.

  “So I still have a recurring nightmare—like an anxiety attack in which I actually shvitz—where I sweat like crazy. I’m in my last year of medical school, and I miss an exam, or I fail it, and I have to go back and repeat the year again, and in order to do this I have to move back into my Brooklyn apartment. That’s the nightmare I still have all the time.

  “Which is what I did—I was married for my last year of med school, but I lived at home for my second and third years, in the same room I used to share with Allen, and carrying my microscope on the BMT, hugging it like a baby.

  “In high school, you see, I figured out that there were only two tickets out of Brooklyn. One was to be a great athlete, which was my dream until I got to high school and saw that there were guys ten times bigger and fifteen times faster than me.”

  I remind Phil of the time, during our sophomore year at Erasmus, when we were on the junior varsity baseball team together and we got to play against the varsity. “Yeah,” Phil says. “And then, after my freshman year, when I gave up on being a pro ballplayer and saw I could get good grades by doing the things I did naturally, I said, ‘Well, if I do it a little more I’ll get very good grades.’ So I did a little more.

  “And I knew that would give me power, and would be a way out. Everything I did was so I could get out of Brooklyn and escape my apartment. I mean, I felt it was all on me, even when I was away at college, because if my parents got sick I’d have to drop out and help them, and I resented that. Only, I was fortunate, and it never happened.”

  I ask Phil about what has and has not changed since he started out in medical school.

  “Well, the smartest doctors will still tell you that if you listen to the patient, the patient will tell you what’s wrong with him,” he says. “Because it’s not the disease, you see, but it’s how the particular disease affects the individual patient. I mean, a lot of us went into medicine because it’s first of all a science—you have to look at the illness, at the state of tissues, at organ systems, and try to understand what’s going on, and what you can do or have to do. Like, if a person has pneumonia, and you give antibiotics, you check the x-ray to see that the pneumonia’s gone. But you also have to look at the individual patient who has the disease, and see how the story of the illness takes place in this particular person—so that a doctor is somehow at the juncture of what’s both objective and subjective.

  “Now, neurology started out by studying diseases of the brain, spinal cord, and nerves—how they express themselves—and we looked at the patient’s complaints, and examined the patient through the years, and then the patient would die, and we would examine the tissues at death. That’s how we started out. And we knew things grossly—like if there was a gunshot wound to the right side of the head, the left side of the body might be paralyzed, and if someone died and we saw a lesion on the right side of the brain it showed why the left side had been paralyzed.

  “So neurologists took care of people who had something wrong with the ability of the nervous system to work, or it was hyperactive—like epilepsy, where there were seizures—or it was underactive, so a lesion was causing paralysis, weakness, loss of vision on one side, loss of speech, clumsiness. And once you localized it to where in the nervous system the problem was, you could make a presumptive diagnosis of disease and tell the patient he had something wrong with the right side of the brain, or the spinal cord at this or that level, or with the nerves coming out of the spinal cord. Then, if they decided it was amenable for surgery, you talked with the neurosurgeon, and maybe you’d have an operation.

  “But that all changed when neurologists had a way of looking inside the black box of the nervous system. It started with x-rays, in the beginning of the century, which let you tell if there was an abnormal collection of calcium inside the brain, or if it was pushed to one side or the other, or if you had a broken head—if you fell down and got a fracture and there was air inside your head, or a bullet fragment, or a calcified tumor. After x-rays, then angiography came, or probably pneumoencephalography first, where you injected air inside the nervous system, and it filled the fluid structures and you could see if they were distorted in any way. Then the next thing was the injection of contrast material—metallic dyes into the arteries—and then you take an x-ray, and you can outline the arteries of the brain and see if they’re blocked, or if there’s an abnormal bulging of an artery, and so you could make inferences as to the disease that was causing the patient’s symptoms.

  “At the same time, or about the same time, people also injected dye into the spinal canal, and studied the spinal cord, and all of those we called interventional techniques, and they all had risks associated with them. It involved the patients being punctured, and foreign materials being put into them.

  “Then along came the CAT-scan, and that came after I finished my residency, in 1973, and you could put yourself inside a tube, and by mathematical analysis of x-ray absorption, you could get a look at the structure of the brain, which before that had only been visible at autopsy. And that revolutionized the field of neurology because you no longer had to make a guess based on the examination of the patient and the patient’s complaints. You now had a way of verifying things without risk to the patient.

  “When it first came here, the governor of Colorado said Denver should have only one CAT-scan for the whole city. Now most hospitals have two, and we keep them running around the clock, and you can’t work without them.

  “Then, in 1986, I think, came magnetic resonance imaging—MRIs, and PET-scans—and they gave you further anatomical clarity for the problems you were dealing with so you can fairly well localize a great deal of lesions. Some you can’t, and they still remain a diagnostic problem, but for those you can, the characteristics, on CAT-scanning and MRIs, may even tell you what the tissue type is.”

  I remind Phil of how excited he was a dozen years before, to show me the first MRI machine at his hospital, a huge metallic cylinder that looked like a space capsule, and of how I watched with him while one of his patients was inside the machine. The patient was frightened, and Phil kept calling to him—“Just enjoy it, Sidney—make believe you’re in the love canal!”—and afterward Phil showed me how the dozens of images the machine produced were able to give him a three-dimensional picture of Sidney’s brain.

  “The tubes are more comfortable, and some people have open MRIs now,” Phil says, “and we can tell the difference between a stroke and a tumor—we don’t have to guess—so our diagnosis rate is much better. The detail is just miraculous. In the old days, the very best neurologists—our teachers—maybe had a fifty percent accurate diagnosis rate, but now we’re up to eighty or ninety percent. We can localize much better, so the neurosurgeon knows exactly where he’
s going to operate. He can cut down right on top of the tumor, or put a needle through the skull that will go right into the tumor instead of just searching around.”

  Phil talks about the gains that have come about because of emergency response teams and evacuation teams that begin treatment at the site of the accident; about medications, antibiotics especially, that cure infections and prevent complications; about medications that are effective for high blood pressure; and about various ways we’re better equipped to deal with trauma and to enhance rehabilitation.

  In the regular course of his work, he explains, people come to him with headaches, migraines, backaches, troubles with memory, dizzy spells, strokes, and the aftereffects of head and spinal injuries. He also deals with long-term management problems relating to degenerative diseases such as multiple sclerosis, Parkinson’s, amyotrophic lateral sclerosis (Lou Gehrig’s disease), and Alzheimer’s.

  “So I see anybody who has these things,” he says. “My interest is in what happens when people get hurt. You know, what the doctor did when we were kids was he sort of held your hand and watched the natural course of the disease. A neurologist still does a lot of that.

  “But he tries to see if he can alter it for the good, and manage it, and make sure nothing makes it worse. That’s why if you’re excluded from the patient’s pathway of care, or made ancillary—especially with chronic, long-term conditions—your expertise is not taken advantage of, and the patient suffers. A patient needs continuity of care and consistency. If you have a chronic illness and you switch doctors, it means the patient and doctor have to start all over again trying to understand things. The heart of medicine is the doctor-patient relationship, and if the patient does not feel he’s hired a specific doctor to work for him to maximize his health, then the patient loses trust in the system.

  “With managed care, there’s a great emphasis on general practitioners, because with the insurance companies and the HMOs it’s much cheaper for them to have a generalist or a nurse practitioner do everything, and only ask advice from the specialist, rather than have the specialist manage the illness. This is backwards. You wouldn’t ask a high school physics teacher to work on the atom bomb or solar energy, although he might understand the concepts. You wouldn’t say, ‘Why don’t we just get the nuclear physicist to come and spend a day with you, tell you what’s wrong, and then you take over the experiment.’

  “I mean, the patient may have only two visits with you when the illness is something that needs to be managed consistently. Or an MS patient may have several symptoms that a well-trained neurologist would understand in order to prevent further flareups. But if the patient is not encouraged to see the neurologist and just calls the doctor’s office and gets the nurse on the phone, she may or may not realize the significance of the symptoms. I mean, look at what happened when you first called and got the nurse! And if you hadn’t thought to call Rich after that, we wouldn’t be talking now.

  “How you manage the illness, what advice you give to the patient, who you pick to do an operation, or what you advise about chemotherapy or radiation—that’s still the art of medicine. A test can’t give a diagnosis.

  “Now, not long ago I advised two people against having radiation for malignant brain tumors—and for malignant brain tumors we’re still pretty much where we were forty years ago, unfortunately—and they both went ahead and had it, and they both sort of ruined their lives, whatever lives they had left.

  “I recommended against radiation because I said it will debilitate the remainder of your life. But the radiation therapist recommended it, and the standard of care was that they should have it. So everyone wants to grasp onto something—that maybe this thing will stop it. Everyone would like to live to a biblical hundred-and-twenty with intact virility and no mental static, but I don’t think we’re going to find that in our time.

  “And I spend a lot of time fighting with insurance companies too. So, for instance, I get this letter back after I write for one of my patients so he can pay for his treatment, and they send me a guideline they got out of a book, and the doctor who sent it—they have doctors doing this now—I talk with him and he says to me, ‘I understand your position but these are the guidelines we follow.’ So what can I say except that those are not the guidelines I follow?”

  I tell Phil what Dr. Cabin said about me not being cured, that nobody is ever cured, but that I was as close as it gets, and that most of the work he does is like this—it’s a major reason he went into cardiology—and that he’s aware that it is not like this in other areas of medicine.

  “So I look at what you do,” I say to Phil, “and I think, if this is what Dr. Cabin gets—what do you get?”

  “Well, cardiology is way ahead of us,” Phil says again. “But my satisfaction comes from seeing the natural healing take place, and trying to prevent complications. I see myself as a caretaker of the brain, whereas he sees himself as someone who can actively intervene. He can put new blood in you, put a new blood supply through veins. I can’t do that yet.”

  I talk about the theories concerning the infectious causes of heart disease and cancer, and Phil notes that MS, for instance, like other neurological diseases, may be infectious in origin. “Maybe brain tumors are an infectious disease. Maybe it’s a virus,” he says. “Okay. A lot of people get viruses, but what determines which one will go on to become a brain tumor, and which one will just live in symbiosis with the virus? We don’t know that. Maybe, as with Parkinson’s, we can inject cells into the brain to grow over it—but we don’t know if we can, and we’re just beginning. And there are hereditary defects where you don’t make enough of a protein, or you make too much, and maybe we can learn to regulate that. Friedreich’s ataxia, for instance, is a hereditary genetic disease—it’s a balance problem, where you get this unsteady jerking-type gait because of a recessive gene that doesn’t make a protein, or maybe an enzyme, that we need.

  I ask about a former patient of Phil’s who, during the April 20, 1999, massacre at Columbine High School, in Littleton, Colorado (one town over from Greenwood Village), in which two students killed fourteen students and a teacher while wounding twenty-five others—was shot several times. Phil says he happened to see the student this past week—on the day I arrived, in fact, and that the student is going to school and doing well. “He’s lucky,” Phil says. “His injury was to the left side of his head, and he’s left-handed, so he didn’t lose use of his dominant hand. He may still have some deficits, though—in walking, and in his speech, I think. He answered all my questions in just monosyllables.” Phil smiles. “But I don’t know—I mean, how does that make him so different from my son Jared and his teenage friends?”

  14

  The Patient’s Story

  ON MOST SATURDAYS,” Rich says, “my friends and I would hang out in front of Ebbets Field, where the Dodgers played—this was when we were ten or eleven years old—in the hopes that someone would have extra tickets at the last minute and bestow them on us. So we’d stand there and look forlorn, and it worked out for us a surprisingly high percentage of times.

  “Well, one day we were there, flipping baseball cards, and up the staircase from the subway came this big black man, and the next thing you know I was blurting out, ‘Hey—you’re Jackie Robinson!’

  “I still remember exactly what he was wearing: tan slacks, brown loafers, and a short-sleeve sport shirt with a white and brown stripe. He was a very dark man, very good-looking, and he said, ‘Come here, kid.’ And I went over and lo and behold, he takes my hand in his great big huge black hand and walks across the street with me toward the ballpark.

  “I mean it was like I was dreaming. And he said, ‘You play ball, kid?’ and I said, ‘Yeah, yeah—and I do everything you do. I do everything just the way you do it!’ And I stop right in the middle of the street and assume the Jackie Robinson baseball stance, which was the stance that I had—the bat high over my right shoulder, challenging the pitcher, bent over, and slightly pigeon-t
oed the way he was—and he cracked up.

  “Then he grabs my hand and says, ‘Hey—we’re gonna get into an accident.’ So we walk across to the other side, and he smiles at me and taps me on the hand and says, ‘Keep swingin’, kid,’ and goes into the clubhouse. Well, I did not wash my hand for more than a week, and I was in the ozone layer for a month after that—I told all my friends—and I still get into the ozone layer telling the story fifty years later.”

  Rich and I are far from Brooklyn, in Palos Verdes, California, on a gorgeous, clear summer day, and while we talk and trade stories, I look out through an open window at the Pacific Ocean, at sailboats drifting gracefully along a horizon speckled in shimmering silvers and golds by a brilliant midday sun. I have swum a mile in the morning, and when we are done taping this part of our conversation, Rich and I will play an hour or two of tennis.

  Rich is six feet two inches tall, weighs about 190 pounds, and, in shorts and T-shirt, looks amazingly youthful. He plays tennis several times a week, regularly defeating guys who played varsity tennis in college and are twenty and thirty years younger than he is.

  He says that Jackie has always been his great hero, and I tell him Jerry said the same thing when I saw him a few weeks ago. Jackie was my hero too, along with Lou Gehrig (from having read Frank Graham’s biography, Lou Gehrig: A Quiet Hero), and “Pee Wee” Reese (like Reese, I played shortstop). I tell Rich that the main character in one of my novels marks his life by events in Jackie’s life, and we talk for a while about Jackie and the Dodger teams of our youth, and about how and why it is that a bunch of lower-middle-class Jewish kids from Brooklyn so loved, and identified with, this extraordinary black man.

  Beyond the fact that we all hoped to play for the Dodgers some day, and the fact that Jackie was the most exciting athlete of his time (in addition to playing baseball for the Dodgers, for the Kansas City Monarchs in the Negro Baseball League, and for his college, UCLA, he was the first four-sport letterman in UCLA history—a baseball player, an All-American in basketball and football, and the NCAA broad jump champion), he was rejected and despised for something—the color of his skin—over which he had no control.

 

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