One Year Later
HOW CURIOUS, I THINK when I leave Dr. Melman’s office the first time: I’ve now seen two urologists, both in positions of responsibility at large New York City hospitals, both with significant achievements in research and with extensive clinical experience, and yet, confronted with a problem familiar to urologists, one tells me I have “a mild case,” the other tells me I have “quite a lot of disease”; one tells me I should take no more than 400 units of vitamin E a day, the other tells me to take 2,000 units a day; one prescribes 12,000 milligrams of PABA a day, the other says that PABA is useless and, instead, prescribes a medicine usually used for gout; one runs extensive blood tests, the other runs none; one wants to see me in three months, the other in six weeks…
More curious still: even though Dr. Melman has told me I have quite a lot of disease, and though he talks with me about dysfunction, impotence, and pain; injections, surgery, and prostheses—possibilities Dr. Haight never hints at—when I leave Dr. Melman’s office, I feel relieved and reassured.
Ten days earlier, however, when Dr. Haight tells me I have a mild case of Peyronie’s that PABA and vitamin E will probably cure, and that I should have no problems sexually now or in the future, I leave his office feeling more anxious than I was when I entered it.
On the six-block walk home from his office to my apartment, I talk with my father, and—this is New York City, so nobody seems to notice—I do so out loud. I am awash in insecurity and self-pity, and though there is no rational basis for being as upset as I am, something about the visit has unmoored me.
Will I ever be able to love again? I ask. Will any woman on this planet ever love me again—ever want to love me?
The doctor said you’ll be able to make love—to fuck again, right? my father replies. Isn’t that what you’re really worried about? I mean, I know you, sonny boy. Let’s talk tachlis. Didn’t he say that the problem you came to him for—this little bend—will probably go away?
Yes, I say. Sure. But if he told me I’m okay, why do I feel so shaken? So abandoned! I mean, look at me—I’m actually trembling.
My father’s voice softens. I can see that, he says. But you’re a smart boy, Jay. So you tell me: What do you think is going on?
I don’t know, I say. But—okay—I was wondering: maybe what’s happening in me is just a delayed reaction to the bypass surgery—some postponed postpartum displacement of the fear and depression I didn’t acknowledge a year ago. Everybody tells me I was so positive and optimistic before and after surgery, but maybe I was just overcompensating and covering up.
My father shakes his head sideways and puts a finger to his lips, to shush me.
If you want my opinion, he says, you analyze things too much. The doctor said you’re okay and that you have a mild case, right? Then take his word for it. And listen: I’m glad your heart is working well, and that your recovery has been so smooth, and it’s nice to hear from you again. You haven’t spoken with me for a long time, you know.
That’s true, I say. But things have been going well.
So? he says. You only talk with me when things are bad—when you need something from me?
But I’m scared, I say. I glance downward. I mean, this organ is nearly as precious to me as my heart. We’ve been through a lot together.
My father laughs, tells me to go home, to pour myself a stiff drink, to call some of my friends, and to talk with him again soon. Don’t be a stranger, he says.
When I arrive home from Dr. Melman’s office, the first time, I throw out the quart-size container of PABA tablets. Then I call Dr. Haight’s office and cancel my three-month appointment. The next day I start taking colchicine (one o.6-milligram tablet twice a day), along with 2,000 units of vitamin E a day.
By the time I return to Dr. Melman’s office six weeks later, my anxieties have all but disappeared. I tell him that since my last visit, my hopes have, in fact, been realized, and that I have experienced no sexual dysfunction. And six weeks after my visit with Dr. Melman, and more than three months after my visit to Dr. Haight (and two months after Eli and I have returned from a ten-day trip to Israel—a trip we begin during the week of the first anniversary of my surgery), I write and ask for the results of my lab tests. When they arrive, I call Rich and read off the list of more than two dozen things Dr. Haight tested me for (cholesterol, triglycerides, albumin, calcium, chloride, iron, GGT, AST, glucose, alkaline phosphatase, et cetera), and ask why he tested for them if I only came in for Peyronie’s. Is the guy running a factory?
Rich says he thinks I just answered my own question. I tell him that my PSA score is fine (0.87)—scores above 4.0 are those generally considered to be of concern (PSA stands for “prostate-specific antigen” and is a measure of an enzyme made by the prostate, an elevated level of which can signal cancer)—but that I remember being upset with myself at the time of the exam for having let Dr. Haight draw my blood and perform the test.
“Then why did you let him do it?” Rich asks.
“Because he was the doctor, and he told me to roll up my sleeve, and said we should do it,” I answer. “I mean, in the moment, lying on the table with my pants down, I was mostly worried about my dick—and if I was ever going to have any sexual life again. And it all happened so fast.”
“You’ve got it, pal,” Rich says.
“But I also think I was a bit cowed—intimidated, hustled along —and I felt I had no choice but to do what he told me to do. I mean, he was The Doctor. On another day, I might have protested, but—”
“Look,” Rich says. “This is what goes on all the time. You knew why he was doing it, and you sensed there was no good reason to do it, and yet you succumbed.”
“But I’m still not sure why he was doing it,” I say.
“Why was he doing it?” Rich asks, and then answers his own question: “Because it’s his bread and butter. If he gets results that are out of the normal range on anything he tested you for, he can have you back for more tests and more treatment, even though you didn’t come in for anything he was testing you for.”
Rich talks again about how vulnerable and defenseless most patients feel in the presence of a doctor, even when, as in my case, the patient is well informed and knows that what the doctor is doing or recommending is of dubious necessity; he also talks about how scandalous he believes this kind of medical practice is, and how doctors who work this way not only drive up costs unconscionably for all of us, but give other doctors—good doctors—a bad name.
Afterward, it occurs to me that the reason I came away from my first visit with Dr. Melman feeling reassured was this: at the same time that he was providing excellent medical care, he was also providing a human response to a human problem.
Most times no doctor knows what causes Peyronie’s disease, or what treatments will ameliorate its symptoms. Dr. Haight’s prescriptions might have dissolved the collagen—or the scarring might have diminished and disappeared if, as Dr. Melman suggested, I had done nothing at all. (Most medical books agree that Peyronie’s disease resolves itself spontaneously about 50 percent of the time.)
I felt reassured after my visit with Dr. Melman not because he had done anything like promising a cure, but because he had dealt with me openly and thoughtfully, and by so doing, had engendered trust: he explained what Peyronie’s disease was and told me that its causes were unknown; he examined me attentively and noted the way my particular symptoms varied from the symptoms he usually saw; he told me I had quite a lot of disease and he tried to figure out why this was so; he asked questions and listened to me; and he reviewed what we knew and came up with an explanation for the cause of my condition that made sense.
Although knowing what had probably been the source of my condition did not dissipate the collagen, it did dissipate the fear and anxiety I had been living with since I had seen Dr. Haight.
For all that Dr. Haight noticed there was a human being attached to the penis he was examining, I recall thinking, I could have mailed my penis in.
The crucial difference between these doctors, then, lay not in their disagreements concerning diagnosis and treatment, but in the way they each practiced medicine—one doctor relying almost exclusively (and impersonally) on the “science” of medicine—on tests, scores, and procedures—the other doctor, by listening and observing, and by placing the presenting symptoms in the context both of his clinical knowledge and of my history (as I presented it to him)—joining the science of medicine to what, for want of a less grandiose phrase, we have come to call the art of medicine.
In recent years, people with those conditions we call mental illnesses (schizophrenia, manic-depression, clinical depression), along with their caregivers and advocates, have been working to change not only the way we treat individuals with such conditions, but the way we talk about them and write about them.
It matters, we believe, that people like my brother Robert not be collectively grouped under labels such as “the mentally ill,” and that we do not call any human being “a schizophrenic,” “a psychotic,” or “a manic-depressive”—much less a psycho, a nut, or a loon.
We urge, instead, that we talk about people suffering from these conditions in the same way we talk about anyone suffering from a debilitating condition—as someone who has an illness, or has been diagnosed with a disease, as in: John has the flu; Jane was diagnosed with breast cancer.
Robert is no more “a psychotic” than I am “a Peyronic.” He is a complex, fascinating, fifty-nine-year-old man with feelings, talents, memories, hopes, desires—a man with a full, rich, and most unenviable life. To define a human being by the disease or condition from which he or she may suffer, in the short or long term, reduces that individual to the disease, and once we reduce an individual to a single element in that individual’s life, especially something generally considered undesirable, dangerous, or alien—how easy it becomes to regard this person as less than us, and as less than human.
Because I have been witness to the inept and cruel ways people designated by the world as mad are frequently treated—the ways the media stereotype and denigrate them, the ways family and friends abandon them, the ways the institutions of our society neglect them, abuse them, and deprive them of necessities and rights most of us take for granted—I am sensitive in ways I might not otherwise be to situations wherein an individual, because of his or her difference, is treated in inhumane and harmful ways.
Yet at least as insidious as the ways human beings are treated for conditions they cannot change—whether disease or skin color, disability or ethnicity—are the ways they frequently internalize attitudes others have toward them.* Thus, those suffering from diseases such as schizophrenia, and called “nut-cases” or “psychos” (or those called “lepers,” “retards,” “cripples”), may come to believe what others believe of them: that they are defective beings unworthy of the care and respect of others, and believing this, they become helpless and willing victims of a kind of medical Calvinism (“By their diseases shall they be known”) that is pernicious in the extreme.
And what happens in situations for individuals who, disabled by their conditions, live in isolation from the larger society, happens in ordinary if less lethal ways in doctors’ offices, clinics, and hospitals every day. It happens whenever doctors, in their practice of medicine, see and treat only the disease—or what they perceive to be the disease—and not the patient who has the disease.
I felt depressed and helpless when I left Dr. Haight’s office—impotent—not because I thought I would become physically impotent (the doctor assured me I would not), but because, coming to him with a problem decidedly not a life-and-death matter, though one that made me apprehensive, he separated me—my self— from my problem, and made me feel I had been reduced to my symptoms. In his office, I did not exist.
Conversely, a year earlier, when told that my coronary arteries were occluded and that I would have to have open-heart surgery as soon as possible, I felt fortunate to know the nature of my problem, blessed in my friends and family, confident in my doctors, and optimistic about what was going to be done for me.
In the aftermath of my visits to Dr. Haight and Dr. Melman, what my friends had been explaining about the practice of medicine came home to me once more: I was reminded of how unscientific the science of medicine can be, and of how mysterious the processes both of disease and of the amelioration of disease often are. I was reminded, too, that just as healing is, at its root, a natural process, so too is disease a natural part of our ongoing lives, and that when this is denied and our ailments are treated as if they existed apart from us or, worse still, as defects we ourselves bear responsibility for bringing into being, then something of our essential humanity is taken from us.
For whether we are in a doctor’s office, at our jobs, or with friends and family, the desire to be known: to be recognized as a particular and unique human being, and not another—like the desire to know, and the comfort that comes from knowing—would seem to be innate.
Consider what happens during the transplantation of organs, where the initial response of the recipient’s immune system is to reject what it does not recognize as being itself. Only when medications that suppress immunological responses are knowledgeably employed do our bodies accept the physical gifts—parts taken from other human beings: lungs, livers, kidneys, hearts—that allow us to survive, to function, and to live on.
During the past few years I have met hundreds of individuals who have suffered from a history and condition similar to my brother’s but who, unlike my brother, have recovered into full and independent lives. Without exception, though they often praise medications as being central to their recovery, each of them tells me that the most important element in his or her recovery has been a relationship. They explain that what has made the difference in their lives is the fact that someone, usually a professional, but sometimes a friend, family member, or member of the clergy, entered their lives at a particular moment, one they invariably describe as “the turning point,” and said, in effect, “I believe in your ability to recover—to have a better life than the life you have now—and I am going to stick with you and by you, through whatever ups and downs may lie ahead.”
The belief others had in them, they say, has allowed them to believe in themselves.
They do not underestimate the beneficial effects of medications. Nevertheless, just as Viagra cannot ameliorate erectile dysfunction in the absence of desire, so antipsychotic medications often cannot ameliorate emotional and social dysfunction in the absence of a caring relationship.
And just as surely, the loss of a caring relationship can attenuate the positive effects of medication. A few years ago, for example, Robert was put on clozapine, a newer medication that has proven uniquely effective for many individuals who suffer from long-term mental illness. Within a short while, he had improved so greatly—“miraculously,” his doctors said—that he was, after four consecutive years of hospitalization, being prepared for discharge.
At this point, his social worker, whom he had known for many years, both at his present hospital and at a hospital where he lived previously, was, without warning, transferred to another location. Within a day, Robert, who had become increasingly lucid, realistic, and happy, became angry, confused, and volatile. He deteriorated rapidly into a wild state of rage, confusion, and irritability in which he once again, alas, became a danger to himself and others.
The salient question here—why did the medications that worked so well one day cease to be effective the next day?—would seem to be rhetorical.
For how different, in this, is Robert from the rest of us? What happens to any of us, especially in crisis, when those we believe we can depend upon suddenly disappear from our lives? For most of us, the presence—or absence—of such connections, as in my brother’s life, has tangible issue. We know, from numerous studies, that, following heart attacks, people who are isolated, living alone, or unmarried and lacking a confidant are at significantly increased risk for death.* We also know, to cite a familiar instance, that widows and widowers have higher mortality rates than married persons—that their death rates, when living without companions, are higher than would otherwise be expected on the basis of age.
We would seem, then, especially in difficult times, to need connections to others as dearly as we need food, air, sleep, and water. Writing this chapter during the last week of September 2001, I think of those men and women, trapped in the World Trade Center, who hold hands while they jump to their deaths. The act of joining hand in hand with another human being so as not to die alone would seem a sad instance of this human need.
“Our free will has no product more properly its own than affection and friendship,” Montaigne writes in his essay “Of Friendship.”
“It is not in the power of all the arguments in the world to dislodge me from the certainty I have of the intentions and judgments of my friend,” he states, and continues, a few lines later: “I should certainly have trusted myself to him more readily than to myself.”
At the heart of such a friendship—friendship of a kind Montaigne distinguishes from other, lesser forms of friendship that family bonds, laws, customs, erotic love, and various social and civil obligations impose upon us—is trust.
So: just as sorely as my brother’s trust was taken from him by the transfer of that person upon whom he depended more readily than to himself, so was my trust strengthened when I was fortunate enough to have doctors recommended by my friends, and in whom I could trust—for specific needs, at a critical time—in the way I have trusted in my friends, “more readily than to myself,” for many matters, large and small, through the years.
“When I give talks on clinical care for treating HIV/AIDS,” Jerry says, “I call trust ‘The Big T’—that hard-to-define but very special and most precious two-way commodity that makes it all work.”
And when, thinking of my friends, I try to understand why and how each of these friendships has become what it is, I answer, with Montaigne, that “I feel this cannot be expressed except by answering: Because it was he, because it was I.”* On the nature of this “more equitable and more equable kind of friendship,” Montaigne quotes Cicero: “Only those are to be judged friendships in which the characters have been strengthened and matured by age.”
What we want, and require, in the practice of medicine, then, has much in common with what we want, and value, in friendship: knowledge of who we are, both in our similarities to others and in our differences; constancy and loyalty over the course of time; and accessibility and reliability in times of need. When we are ill or diseased, or when we are suffering or in need, we want our doctors to be those in whom we can trust more readily than we do ourselves.
When, two weeks after the World Trade Center tragedy, Arthur suggests to a friend that he speak with me about a book he has written, Arthur’s friend, a man in his mid-thirties, says that Arthur spoke of me warmly. “He said the two of you are like brothers,” the young man tells me.
From ancient times (as in David and Jonathan) to the present (as in the film about World War II, Band of Brothers), when we want to express the strength and importance of a friendship, we often speak of friends as being like brothers.
We expect from such friends, that is, not only the loyalty that results from obligation, but a depth of feeling—of passion— we ordinarily associate with family life. In part because friendships are created and sustained freely, we may elevate them above familial relationships and come to feel, with Montaigne, that some friends, like some brothers, are very nearly interchangeable with us. “In the friendship I speak of,” Montaigne writes, “our souls mingle and blend with each other so completely that they efface the seam that joined them, and cannot find it again. If you press me to tell why I loved [my friend], I feel that this cannot be expressed except by answering: Because it was he, because it was I.”
While what we want from our friends and from our doctors has much in common, there is this difference: we would have our doctors bring to our lives medical skills and knowledge of a kind we ourselves do not possess, and that they can utilize dis-passionately. We want, that is, to be able to rely upon them, as with friends, for their constancy and their caring, but also for their competence and their judgment. And it is the joining of such qualities in them—constancy, caring, competence, and judgment—that engenders trust in us.
Again and again my friends emphasize the importance of trust in their relationships with their patients. It is trust in Jerry that enables patients to adhere to the difficult regimens of antiretroviral therapies; it is trust in Arthur that allows his patients to talk about feelings, thoughts, and experiences that lie at the root of their difficulties, dysfunction, and pain; it is trust that allows Rich’s and Phil’s patients to talk with them in ways that elicit symptoms, events, and underlying conditions that maximize chances for helpful diagnoses and treatments.
“Most of the people with AIDS whom I’ve seen have been intravenous drug users,” Jerry says, “and they have a reputation for being difficult, frustrating patients. They’re engaged in illegal stuff, they’re secretive, and they rarely have an established, ongoing relationship with a health-care provider, so they tend to elicit disapproval, and worse, from health-care workers. In turn, they become distrustful and expect judgmental treatment.
“But I’ve found that when you treat them with attention to their medical needs in a straightforward, clinical manner, most intravenous drug users can be disarmingly open about their lifestyle, and no more or less difficult than other patients. The essential point, as I see it, is that each person, intravenous drug user or otherwise, is unique, and does not comfortably conform to any stereotype.”
Moreover, trust itself—Jerry’s “Big T”—allows many conditions, physical and emotional, to resolve themselves more readily than they otherwise would for the very real reason that a doctor’s knowledge of who each of us is in our particularity enables the doctor to judge more exactly the ways specific diseases and conditions may be acting in any one of us—and because, as the history of the placebo effect, and of healing, reveals, such trust in the physician frequently aids and hastens healing processes.
We know that mental and emotional states brought on by trauma can affect us physically—witness the paralyses and muscular contractures of arms, legs, hands, and feet; loss of sight, speech, and hearing; palsies and tics, choreas, amnesia, catatonias, and obsessive behaviors that resulted from shell shock in World War I.*
We also know that patients who adhere to treatment, even when the treatment is a placebo—and adherence to treatment, as Jerry’s studies, and others, have shown, is preeminently a function of trust in the doctor—have better outcomes than patients who adhere poorly. We know, too, that placebos are effective in reducing pain and depression. When medications known to be effective against pain are paired with a variety of neutral environmental stimuli, the environmental stimuli (a pill’s shape and color, for example) acquire analgesic potency equal to, or surpassing, that of the medications. In one survey of (sham) surgery for lumbar disc disease, for example, although no disc herniation was present in 346 patients (“negative surgical exploration”), complete relief of sciatica occurred in 37 percent of patients, and complete relief from back pain in 43 percent.*
In the relief of depression, placebo effectiveness, in a large number of studies, ranges from 30 to 50 percent, and, when compared with effective drugs, placebos are 59 percent as effective as tricyclic depressants, 62 percent as effective as lithium, 58 percent as effective as nonpharmacologic treatment of insomnia, and 54 to 56 percent as effective as injected morphine and common analgesics.*
In a 1999 study (“Listening to Prozac but Hearing Placebo: A Meta-Analysis of Antidepressant Medications”), researchers conclude that “75% of the response to the medications examined in these studies may have been a placebo response, and, at most, 25% might be a true drug effect.”* The authors explain: “This does not mean that only 25% of patients are likely to respond to the pharmacological properties of the drug. Rather, it means that for a typical patient, 75% of the benefit obtained from the active drug would also have been obtained from an inactive placebo.”
And with regard to heart attacks, studies show that emotional conditions affect survival at least as strongly as more purely medical factors—that, for example, “the presence of major depression after acute myocardial infarction increases six-month mortality more than and independent of such clinical factors as heart failure and extent of coronary disease.”* In another study, in which patients took drugs to lower their lipid levels after heart attacks, while only 15 percent of patients who took most of their prescribed medications died during the next five years, 25 percent of those who adhered less well died during the same period, and it made no difference whether the patients took active drugs or placebos.*
And just as the loss of a loved one, or the end of a relationship with someone we have loved, can bring about depression and other distressing conditions of mind and body, so falling in love and being in love can enhance our well-being. Not only do we feel better because we are happier—appreciated, known, loved—but this state of being can help relieve preexisting conditions of mind and body (depression, impotence, headaches, gastrointenstinal disorders), and, appearances not being deceiving at such times, may often lead friends to tell us we look better too.
On the cover of the January 9, 2000, issue of the New York Times Magazine, above a headline in large, bold type (“Astonishing Medical Fact: Placebos Work!”), are four pictures, each labeled—a pill (“Antidepressant”), the top of a man’s head (“Fetal-Cell Implantation”), a knee (“Arthroscopy”), and a black-capped bottle (“Cold Remedy”)—and across each picture, stamped in red ink: FAKE.* In the accompanying article, the author, Margaret Talbot, concludes “that the placebo effect is huge—anywhere between 35 and 75 percent of patients benefit from taking a dummy pill in studies of new drugs.”
Talbot surveys a substantial body of research that demonstrates the effectiveness of placebos used in place of medications and surgery (dummy pills for depression, make-believe surgery for knees, and so on). She also reports on studies that “show actual physiological change as a result of sham treatments.” In eleven different trials, for example, not only did 52 percent of patients suffering from colitis (inflammation of the large bowel), when treated with placebos, report feeling better, but “50 percent of the inflamed intestines actually looked better when assessed with a sigmoidoscope.”
Placebo effects have been explained in many ways—they may work because of conditioning (as in Pavlov’s experiments); or because of the release of endorphins that stimulate the brain’s own analgesics; or because of the diminution of stress. But what all explanations have in common, Talbot writes, “is the element of expectation, the promise of help on the way that can only be imparted by another human being.”
What is clear, too, is that without the doctor who prescribes it, the placebo is powerless.
“It may seem strange to say this of a profession regularly accused of vanity and self-importance,” Dr. Leston Havens, professor of psychiatry at Harvard Medical School, writes, but the fact is “that many professional people allow themselves to come and go among patients as if their knowledge and skills were all that counted, their persons not at all.* One sees this most vividly with medical students, who cannot believe in their importance to the people they take care of. Yet we are the great placebos of our pharmacopoeia, and the power of the placebo can be measured by the results of its withdrawal.”
In talking with my friends about placebos, they make a helpful distinction between illness and disease.* For most doctors, they explain, disease is what the doctor sees and finds, whereas illness is what the patient feels and suffers. Given that what most doctors see most of the time is illness, the distinction is not insignificant. Although the two terms are, in general, used synonymously, disease can occur in the absence of illness (as in a person with hypertension—or heart disease!—who is asymptomatic), and illness can occur in the absence of disease (all those debilitating conditions of mind and body—stomach disorders, headaches, back pain, hives—that have no discernible physiological causes).
Because we have, since the end of the nineteenth century, been able to successfully treat many previously intractable diseases, we sometimes lose sight of the fact that, as Arthur Shapiro puts it, “the history of medical treatment until relatively recently is essentially the history of the placebo effect.”
Some researchers contend that the placebo effect is a myth, and many, like Shapiro, are keenly aware of “faddish exaggerations about the extent of placebo power.”* Still others, like Dr. Howard Spiro, professor of medicine at Yale, while finding “no evidence that placebos helped disease or that they changed the objective, visible, measurable aspects that we doctors regard as important,” believe that placebos do “help patients with the pain and suffering that the disease brings.”
Yet clinicians, Spiro writes, “have a hard time accepting the idea that mental events may affect physical events, that faith can ‘heal.’ That is why placebos embarrass modern doctors, for they call attention to the persistent dualism of medicine and our so recent climb out of the prescientific swamp.”
Although Spiro accepts the existence of the placebo phenomenon, he insists on the “difference between treating cancer with placebos and treating the pain that comes from cancer with them.” Nonetheless, he cautions physicians to “be humble before our ignorance of how one person can relieve the suffering of another,” and “to remember that the placebo is only a symbol of all that we do that we cannot measure.”
How measure, then, the degree to which my own attitudes and responses, before and after surgery (my persistence in pursuing the cause of symptoms, my skepticism about preliminary diagnoses, my swift recovery, the absence of common complications such as infection, memory loss, and depression), were made possible and enhanced because of the trust I placed in my friends, and in the doctors they trusted?