Colchicine, he explains, is a medication that breaks up scarring by dissipating the molecules in the collagen—the fibrous deposits we hypothesize are causing the problem. Since blood has trouble getting around these deposits, the penis, when blood surges into it and causes it to become erect, only stays erect to the point where the collagen deposits lie; the absence of blood stimulating the erectile tissue at these points is what causes the penis to bend, sometimes to a ninety-degree angle.
Frequently, the condition causes considerable pain and makes sexual intercourse difficult or impossible. In some cases, when collagen deposits encircle the penis so that blood cannot rise to the shaft’s full length, the penis will balloon out to the point of the scarring, and will remain limp for the remaining portion. In such cases, the only remedies are surgery—removing the collagen and transplanting in its place tissue from other parts of the body (a procedure that is rarely successful)—or the use of prostheses.
Colchicine is often used for gout, Dr. Melman informs me, and it has few side effects. If I start to have diarrhea, though, I am to stop taking the medication at once and to call him.
He asks if I have experienced any pain (I say no), or if my penis has become smaller (I say no again—not as far as I can tell), and he tells me he doesn’t think things will get worse. He hopes they will reverse, but if they should get worse, there is an injection he can give me, or a simple surgical procedure he can perform, though he would do either of these things with great reluctance, and is inclined to wait and see if the colchicine does the job.
When, in his office, he asks me about myself—why I am in New York, why I moved down from Massachusetts, and I say that I’m a writer, he tells me about a book he has written (a woman’s guide to men’s urological problems) and how he is having trouble finding a publisher. He asks me to come back in six weeks but to call immediately if I notice any significant changes.
The bill for his services is one hundred and fifty dollars. When I take out my wallet, to give his secretary my five-dollar insurance copayment, she waves it off and tells me to forget it.
Six weeks later, when I return and Dr. Melman examines me, he is pleased to find that the scarring seems to have diminished. How can you tell? I ask, and he points to the drawing he made last time, after which he makes a new drawing.
“You’re a very lucky man,” he says, and then: “But don’t you think it’s improved?” he asks.
I say I do, but that he’s the doctor. He shakes his head sideways, tells me that I am the best judge of whether or not the scarring has diminished.
“Look,” he says. “Colchicine is a nonspecific medication. You might have improved without any medication—if we’d done nothing at all. We really don’t know. Still, it’s probably a good idea to continue with the colchicine.”
He asks if I have experienced any difficulties during sex, and I tell him I haven’t had sex with anyone since the last time I saw him, but that I have hopes. We talk about books and publishers, and he asks how my writing is coming along. I say that it seems to be progressing, inch by inch and page by page.
“I’ll probably include something in the new book about Peyronie’s,” I say.
“Could prove interesting,” Dr. Melman says. “It’s what President Clinton has, you know—the famous distinguishing characteristic Paula Jones alluded to.”
“I haven’t written this part of the book yet,” I say, “but if I use chapter titles, I think I know what I’ll call this one.”
He smiles. “Yes—?” he asks.
I smile too, and give him the title: “‘They Saved My Life But Bent My Dick.’”
9
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.
Open Heart Page 17