Open Heart (23 page)

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.