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Authors: Jay Neugeboren

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BOOK: Open Heart
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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

O
N
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-toed 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.

Although, growing up in post-World War II Brooklyn, we did not
suffer from anything like the kinds of bigotry, hardship, humiliation, and/or violence most blacks knew—or that our relatives who came from Europe, or did not make it out of Europe, knew—we did know what it felt like to be demeaned for things beyond our control, and what it felt like to have to suck up our rage when injustice prevailed. And we burned with a fierce desire to be accepted—and victorious—in that larger American world that lay beyond our homes and neighborhoods.

Like Jackie, we were determined to do whatever it took to get to the ball, to win a game, to have our moments of glory on the ballfield—and our place in the sun away from the ballfield. We were driven by our parents—to succeed, to excel, to get the best education possible (an education, we were taught, was something nobody could ever take away from us)—and we drove ourselves to get as far away from our parents, and their world, as we could.

We loved playing ball for the sheer joy of playing—the games, the sweat, the camaraderie—and also, I suggest to Rich, because the ballfield and schoolyard were places where life was
fair:
where you were judged not by the heresy of your birth, but according to your merits and deeds—by how hard and well you played, by how you handled winning or losing, adversity or a lucky break.

“There was no arguing a home run or a clutch basket,” Rich says. “I mean, being in my home, or at school—which for me was another paramilitary indoctrination situation—there was never any joy in learning.
*
School was strictly a testing ground to see if the home conditioning had succeeded. I knew that early on. After the stultifying environment of my apartment, sports became the great outlet. I lived to play ball, and when I played ball I could let out all the repressed stuff I never expressed at home. Psychologically, sports saved my life.

“I'll tell you a story,” he says then. “On the Math Regents one year—the statewide exam we all took—I got a ninety-nine, and I raced home to tell my mother. Characteristically, she was sitting in front of the mirror at her vanity table, putting on her make-up, and preoccupied with that. But I came bursting into her bedroom. ‘Mom—guess what?' I exclaimed, and she said ‘What?' and I said, ‘I got a ninety-nine on the Math Regents!'

“Then my mother, without looking around, and while continuing to put on her make-up, said, ‘What happened to that other point?'

“Now, at that moment I knew there was no way I was ever going to be able to satisfy her—and right then something changed in me forever. Number one, I knew I would never be good enough—and maybe I wasn't good enough. And number two, I gave up on the idea of looking or hoping for her approval. After that day, I only went through the motions.”

I quote a character—a psychiatrist—from one of my novels who posits a revision to Freud's theory about the favorite son of a doting mother going through life with the feeling of being a conqueror. The psychiatrist puts his version this way: that the unloved son of a narcissistic mother goes through life with the feeling that he must
become
a conqueror.

Rich nods, leans toward me. “Playing ball—being in the schoolyard and the rest of it—that was the only place where I could really be me,” he says.

We reminisce about Erasmus teams, about games of stickball and three-man basketball in the Holy Cross schoolyard, of football and baseball at the Parade Grounds and in Prospect Park, of dodgeball in the third-floor Erasmus gym when Rich and I were in Boy Scout Troop 369 together, and about our synagogue basketball team. Rich was our team's high scorer, and to his astonishment—I showed it to him when he visited me the previous summer—I still have the scorebook to prove it.

BOOK: Open Heart
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