When we understand what causes a disease, and the biological mechanism that enables it to do its damage, Phil explains, things become much simpler. Look at all the polio and TB wards and sanitariums that no longer exist, he says. And someday, if and when we know what causes atherosclerosis, he predicts, all these screenings, angioplasties, transplants, cardiac care units, and the rest will become things of the past. “Once we know these things—” Phil says, “—and this was the great triumph of the early part of the century, with respect to a host of infectious diseases—we have a much better shot at managing disease, and at doing so in much less complicated and less costly ways.”
In the meantime, we make do with what Lewis Thomas has termed “halfway technologies”—patch-up procedures that ameliorate or fix symptoms but neither cure disease nor address the causes of disease. More than a quarter century ago, Thomas defined these technologies as “the kinds of things that must be done after the fact, in efforts to compensate for the incapacitating effects of certain diseases whose course one is unable to do very much about.”* The outstanding examples of these technologies “in recent years,” he wrote, “are the transplantation of hearts, kidneys, livers, and other organs, and the equally spectacular inventions of artificial organs.”
“In the public mind,” Thomas explained, “this kind of technology has come to seem like the equivalent of high technologies of the physical sciences. The media tend to present each new procedure as though it represented a breakthrough and therapeutic triumph, instead of the makeshift that it really is.” But, he continued, “this level of technology is, by its nature, at the same time highly sophisticated and profoundly primitive. It is the kind of thing that one must continue to do until there is a genuine understanding of the mechanisms involved in disease.”
Thomas contrasted the complex and costly technologies for the management of both heart disease and cancer with the type of technology that is effective because “it comes as the result of a genuine understanding of disease mechanisms”—such as immunizations for childhood viral diseases and the use of antibiotics and chemotherapy for bacterial infections. And when such technologies become available, they are “relatively inexpensive, and relatively easy to deliver.”
Sometimes, when I review our conversations and reflect on the world the five of us came from, I wonder how much of our resistance to seeing technological procedures displace human interactions between doctor and patient derives from values present in the lower-middle-class, Brooklyn Jewish world in which we grew up. Is our concern for the well-being of others, especially for those dispossessed of the essentials of life, merely a consequence of having been nurtured by a generation of Jewish immigrants and first-generation Jewish Americans, and by those habits and values specific to our parents’ generation—by those socialist views and rabbinic teachings that formed and informed our parents’ lives and our coming of age?
But to speculate about how our intense work ethic, or our love of books and learning, or our capacity for self-discipline, frustration tolerance, and perseverance were nurtured in the Brooklyn of our childhood (the schoolyard’s Golden Rule: “If you keep making the right moves, eventually the shots fall”), or to consider how, where, and why we all seem to share, as if it were a genetic inheritance, an ambition and desire to leave the world a better place than we found it—all this need not diminish the value of what we may actually have done.
Rich often describes Jerry’s devotion to AIDS patients as “saintly,” and when I tell Phil this, he agrees. “When I think of Jerry I always think of the old Boston Blackie radio show,” he says. “Remember how it went? ‘Boston Blackie—friend to those who have no friends’ That was Jerry. He made his modus operandi the bringing of quality care to people on the fringes of society, to drug addicts and the homeless and the poor—to the people medicine left behind. To be a Harvard doctor in the sixties and to go into Dorchester and Roxbury the way Jerry did was not the usual thing. Harvard academia didn’t see the value of what they considered nonscientific medicine, or medicine that had a social basis and content. And when it came to AIDS, Jerry was a very brave man. He leapt right in with both feet, and made a real contribution.”
Phil and I talk about some of the specific contributions Jerry made—discovering, at a time when people wanted to ostracize and quarantine everyone with AIDS, that one could not transmit AIDS through casual contact but only through blood and genital secretions; persuading the Centers for Disease Control and Prevention that AIDS was transmitted not only by homosexual men but also by heterosexuals—and Phil also reminds me that there were surgeons back then who refused to operate on people with AIDS for fear of contracting the disease themselves. “If this is what you did every day in your life as a doctor, would you risk dying?” Phil asks. “But Jerry just leapt in.”
At the same time, while Phil sees Jerry as a true hero, he doesn’t see him as being more noble than anyone else. “Jerry does what he does because he doesn’t have a choice,” Phil says. “He couldn’t be a high-priced lawyer screwing people because that’s not who he is. He’s like Jane Goodall with the monkeys. She had to spend her life the way she did, and Jerry spends his life the way he does, as a doctor trying to help people other doctors don’t usually care about. It’s what he was made for so that’s what he does.”
Later, when I read Phil’s comments about Jane Goodall back to him, he laughs. “Did I really say that?” he asks.
Phil’s no-nonsense way of seeing things often serves as a useful corrective to my tendency not only to idealize others, but to make of my own life what I might want some other writer to make of it were I the hero in that writer’s book. I am only mildly surprised, then, when I review my journal entries for the periods before and after surgery, to find that I’ve done it again—that the story I’ve been telling others is less than fully consistent with what actually happened at the time.
In the story I’ve been giving out to others, until Rich exploded and told me he wanted me in a hospital as soon as possible, everything in my life was just fine. The proof? I was swimming a mile a day until just a few days before surgery, I had no traditional symptoms or risk factors, and I was more free from stress than I had been in years (my children were well launched, my writing career was thriving, I had no financial problems for the first time in ages), yet everyone, including my doctors—two of whom “missed” the diagnosis—was surprised to discover how severely advanced my heart disease was. Phil confirms this version of my story. “I remember that it was a very unusual event,” he says. “You were in great shape and you had no risk factors—so I couldn’t understand why you would have coronary disease.”
What Jerry recalls is my attitude before and after surgery. Since he too thought I had no significant risk factors or symptoms, Jerry was shocked when he discovered how advanced my coronary disease was. “How could this be real?” he remembers saying when Dr. Cabin showed him the results of the angiogram. “You were hanging by a thread,” he tells me. “I mean—imagine!—you were walking through the valley of the shadow—and it turned out to be much much more serious than we thought it would be. But the amazing thing about you was your positive attitude—that you were immediately accepting and trusting of the intervention and said, ‘Just do what you have to do.’ Often in this kind of situation the first response is denial. People say, ‘You must be talking about somebody else,’ or ‘Why did this happen to me?’ But you immediately said, ‘Aren’t I lucky this was caught in time and something could be done about it, so go ahead.’”
Jerry talks about the relaxed evening we had in his home the night before the angiogram, and he reminds me that we had done the same thing just two weeks before that, when I’d come down to Yale to give a talk for the medical school faculty in their series “Medicine and the Humanities.” He also remembers cautioning me about the fact that most people become depressed after surgery—especially heart surgery—something he had seen frequently following serious illnesses.
“But this
didn’t happen either,” he says. “You never seemed depressed or anything but positive. At every point you kept on saying how grateful and fortunate you were, and I thought that was amazing.
The truth, though, is that I was scared shitless. Despite the face I showed to the world and to friends and family (no matter the troubles or disasters taking place at home, for those beyond our immediate families, we were all trained to put a sign in every window of our lives that said, “Business is Good”), and despite the seeming absence of symptoms and risk factors, I was, especially before the angiogram, worried, depressed, and frightened: worried that something was terribly the matter with me, frightened that I was going to die imminently, and depressed because I believed I was going to die alone.
4
It’s Not Viral, Goddamnit!
LESS THAN TWO MONTHS before surgery—on December 21, 1998, the winter equinox—while swimming my usual mile at the Northampton YMCA, I become suddenly and alarmingly short of breath. Most days I swim seventy-two lengths of the twenty-five-yard pool in slightly under thirty-six minutes, but on this day I find myself gasping for air after swimming only eight lengths. I rest for a minute or so at the shallow end of the pool, resume swimming, and after another eight lengths the same thing happens: I am sucking air as if I’ve just run a grueling series of wind sprints.
I get out of the pool, shower, drive home, and call my family doctor, David Katz. I talk with his nurse, describe what happened, and she sees nothing to be especially concerned about. When I ask for an appointment, the nurse, looking at my chart, notes that I have not had a regular checkup in more than two and a half years. She schedules me for an office visit in four weeks time, on January 18, 1999.
My journal entry for this day—seven and a half weeks before surgery—begins as follows:*
December 22, 1998
Strange experience. Swimming at 545 [PM], find myself breathless, unable to continue. I rest, after 8 laps, then try again, and go another 8, but dont push my luck. Seems to be anxiety. Seems? For sure. Had been having increasing trouble of late, during first 24 lengths—would begin to feel that irritating pain between shoulder blades, after about 16…but then, after doing 24, resting, would be fine for the next 24 or 36 or 48…but decided not to be counterphobic. Sense: all the anxieties and sadnesses and fears (re death, being unloved, aging) somehow focusing between those shoulder blades, and in constriction of chest muscles.
What irritating pain, increasing trouble, and constriction of chest muscles? When, two years after surgery, during the week of February 12, 2001, I read through my journal entries for the days and months preceding December 22, 1998, I find no mention of pain between my shoulder blades, constriction of my chest muscles, or difficulties swimming. Given that my daily entries are lengthy and self-indulgent in the extreme—two to three pages, generally, of typed single-spaced prose filled with rambling enumerations of this kind of mundane detail—I am surprised.
What also surprises—memory, as ever, being the great editor—is that not only do I find no mention of these problems before December 22, but that even now I have no memory of having had these problems before December 21.
Going through my 1998 journal entries, the only items I find having anything to do with my health are occasional mentions of feeling slightly tired when swimming, which feeling I have been attributing to two things: the fact that I’ve been away from home and traveling a lot; and the fact that I have been upset—and unable, often, to sleep—because, over a period of several months, of the deterioration of a relationship with a woman, Ellen, which relationship I ended on December 1, 1998.
The December 22 journal entry continues: “hope it’s not some incipient angina! (do realize-cf dan reeves, marvin newman [a friend who had a bypass operation]—that by my age, many men have had angioplastys, bypasses, etc…. but will see how i do today, try to relax, and see if there is a physical problem, or if this is anxiety, do find self a bit more breathless after long walks, stairs, etc…”
The day before, returning from New York City, where I have spent time with Eli, with Robert (helping him look for a place to live for the time when he is discharged from the state mental hospital), and with friends, I make no mention of my health.
On the morning of December 22, I list events of the previous day: lunch with a friend (who brings me a certified chunk of the Brooklyn Bridge her father, recently deceased, had given to her); a call from Nightline about interviewing me; a decision to return a pair of shoes that are uncomfortable; communication with Yale Medical School concerning my upcoming talk there; the purchase of a bottle of champagne for friends who are getting married; a talk with Robert about our time together; a talk with Miriam, who is heading to California with Seth, et cetera.
I also write about visiting a friend, Norman Kotker, who has just been moved into a local nursing home. Norman has had multiple sclerosis for more than a quarter century, and the prognosis is not good.
Visit Norman [and] when i turn into driveway and see the place—Pine Manor Extended Care Facility—I become enraged, and just start shouting FUCK OH FUCK FUCK FUCK, NORMAN!… how terribly unjust life can be…damn and damn and damn
norman v v weak… says: “people here are more decrepit than i am.” he has a small shelf of his published books, has his word processor, but has no strength at all. sadness incarnate.
The next day I have only minor difficulty while swimming. (“Swim goes well—anxiety lessens. I do 18, then 18, then another 18. A bit of suck-chest after first 18, but by last 18, swimming smoothly and easily and could do more.”) And on the following day, though I swim a mile and a quarter without difficulty, I tell myself that it’s time to make an appointment with my psychotherapist, whom I have been seeing once or twice a year for the past half-dozen years.
On December 27, I write about becoming “tight in chest and a bit breathless around 14–18; but after that do another 26 and easier.” The next day, this: “then nautilus and a swim. Have to stop at 17 lengths, rather than test self re loss of breath…but then go to 54 with no trouble, will check this out with dr katz at january physical.”
I am looking forward to spending the first week of 1999 with Miriam, Seth, and Eli in London (Aaron is unable come because of his work schedule), where I have rented a house for us in the Kensington Gardens area. Happy as I am about this reunion, however, as the time of departure and the end of the year approach, my anxieties about my health, and my life, intensify.
December 29: “Decent day, but v anxious, nervous, etc…hard getting used to being alone (tho to others, it would seem, i do it well, have an enviable life: last nite—Jerry Friedland hesitates, and then says what he is thinking, and hopes I dont take it wrong way: but that his ideal would be to have my life!).”
Immediately after this: “trouble swimming again: I go 18 laps, then 12, then 18…shoot some hoops for first time in a while, and find some shortness of breath there too.”
“It may just be 60 years old, neug,” I write, “but but: why has it started—this shortness of breath, right after breakup with Ellen?” I continue: “clearly, a fear I can’t make it—dont have the stamina, etc.…a panic at being alone (and recall that in childhood, early early, to ward off my mother, and maintain separateness, I held my breath till i was blue in the face)…well: can work some of this thru, but mostly it will work thru in the living. No need to test myself re swimming… we will pay attention.”
But why, given all the ordinary reasons to have shrugged off or explained away the shortness of breath, did I pay attention? I was rarely sick, went years without having even a common cold, and just as rarely called or went to the doctor (witness the two-and-a-half-year hiatus between exams). In more than thirty years of teaching, I had never missed a day because of illness. I never took flu shots, and the last time I had had the flu was eight years before, at the start of Eli’s senior year of high school. When I took myself to bed that fall, Eli had become frightened, he told me then, because he could not remember ever h
aving seen me sick.
About the only worries concerning my health I find in journal entries through the years (this also proves true when I go through my medical records) have to do with muscles torn, pulled, or bruised while playing ball. Now, however, I am speculating daily on possible reasons for shortness of breath, fatigue, burning sensations and pain between my shoulder blades, and “incipient angina.”
In the absence of any clear organic causes for distress, my usual tendency is to look for physical causes for physical problems—I’m out of breath because I’m out of shape and getting older; I’m tired because I’m not sleeping well—and for emotional and psychological explanations for emotional problems, and for those conditions, often physical, that I believe are being brought on, at least in part, by emotions: I am worrying about my heart, then, because I am beginning to believe that loneliness and loss have worn me down in some irreparable way, and because, having recently ended the relationship with Ellen, I fear my heart may finally, in some terribly literal way, be breaking.
On December 30, I set down my last entry for the year:
oh so anxious re stuff: begin to think the swimming anxiety is focusing my fears of aging—have i blown it all? have i used up my chances with eligible women I could care for and who could care for me? Begin to notice that the problem is in my throat, which begins to shut down after about 14 lengths… this also when walking fast: and then it loosens up. But I decide not to push and test myself just to “prove” i can do it: for the proof wont allay the anxieties: we want to allay them from within, and in good, lasting ways. Also: being alone, without a woman = nonexistence emotionally: what my mother taught me in all kinds of ways, and when i am at the pool, about to do my mile, i am alone, vs the elements (cf the 100 Gormley men in the water in norway, looking out to sea). I do 18 pretty easily yesterday—sense i can go and do more: but want to get to garage in time to get new tires…
Open Heart Page 6