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 having 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…
In this final entry for 1998, I look back over events of the past year, talk with myself about things I am looking forward to in 1999—the publication of a new book (Transforming Madness), Miriam and Seth’s wedding, getting started on a new book, Robert’s discharge from the hospital—and I close by wishing myself a happy new year. “So, here’s to a good and safe trip, and to a healthy, happy, surprising 1999 for all those I love,” I write, and add: “and for me too.”
On our third or fourth day in London, Miriam, Seth, Eli, and I climb to the top of St. Paul’s Cathedral—629 steps, the last section a long, narrow, spiral staircase—and I do so without having to stop at landings and without difficulties. The day after this, in chilly weather and at a brisk pace, we walk for five or six hours across the city—from our house in DeVere Gardens, across Kensington Gardens, Hyde Park, Green Park, St. James Park, all the way to the Tower of London and London Bridge, and then along the Thames and back home again—and I do so without experiencing any pain, fatigue, or shortness of breath.
I have arrived in London on the last day of 1998 (Seth, Miriam, and Eli fly in on New Year’s Day), and I spend New Year’s Eve with friends. In my first journal entry after returning to Northampton, this: “spend time with donna and bob [Donna and I grew up together; she babysat me and Robert when we were children], and that is deliteful. gorgeous dinner at Stanley and annabel meadows for new years eve, and then a party afterwards, where a gorgeous young woman comes on to me…”
Months later, when we know that on New Year’s Eve my coronary arteries were nearly 100 percent blocked, we will wonder what angel was looking after me when I made the choice I made that night. For at the New Year’s Eve party I spend most of my time with an attractive young woman (“She looks just like that actress—Jennifer Jason Leigh,” Donna whispers to me) who appears to be in her late twenties or early thirties. We talk, flirt, dance, touch, laugh, and drink lots of champagne. About an hour and a half into the New Year, Donna and Bob come to me while the woman and I are dancing, to wish me a Happy New Year again and to tell me they’re leaving.
“I’ll leave with you,” I say.
Donna and Bob can’t believe it. Nor, when I wish her a Happy New Year and say good night, can the young woman, who urges me to stay. The next day I will tell Donna that happy and ardent as I was feeling, it seemed a good idea at the time to follow a suggestion Miriam, now thirty years old, made some years before: that I never go out with women younger than her.
And after the surgery, we will recall that at our New Year’s Eve dinner, Stanley Meadows had told a story about Joe E. Lewis and Benny Hill and how, one night when the three of them were performing together in a London music hall, and Benny Hill had finally prevailed upon a very beautiful and much younger woman to go out with him after the show, Joe E. Lewis had smiled and, waving goodby, said to Benny: “If you get lucky, she’ll kill you.”
“A brief welcome home entry, with more to come,” I write on January 8, 1999, my first morning back in Northampton. I tell, in summary fashion, about the New Year’s Eve party and the lovely times with my children, then add: “yet i am doleful, sad, in the extreme at times.” A few lines later: “concerned re the breathlessness, and possible heart stuff, damn! fuck.”
For the next ten days I keep scrupulous track of how many lengths of the pool I swim, how often I have to stop, how well or poorly I am sleeping, how much pain I am having between my shoulder blades, and, given my emotional state, now labile in the extreme, I spend more and more time, in longer and longer entries, indulging in and rationalizing away my fears:
To sleep near 1 AM, and wake just past 5. Feeling ok tho: best when working on book… but when i take a break, the loneliness settles in, bone deep. [January 9]
miserable snowstorms all around us…ice, then 8 inches of snow, then rain, then snow, then sleet… i take my time shoveling…v glad to be having physical monday. almost laugh re my anxieties: yes, i became breathless, etc, anxious (minor panic disorder?)…but jay: you did climb to top of st pauls…you did do 50 pushups…but want to get to bottom of the loss of breath, and, during walks, the burning sensation betw shoulder blades [January 15]
The sweetest, easiest most peaceful feeling mid day yesterday—and again before sleep: the book is done, and all is well. I swim an easy 48 lengths, without breathlessness—24 + 24, and am less breathless at end than I have been when i stopped at 12 or 10 or 18. so, diagnosis: acute anxiety re being able to make it. [January 17]
“Annual physical today—first in 2½ years!—and eager to get david’s diagnosis, if any, re shortness of breath,” I write on the morning of January 18. The next morning I report the results.
Good news at physical exam. Blood pressure not a problem. Starts at 150/90—but goes down, on next readings, to 130/84.
No other problems. Talk over the shortness of breath with David, and he recommends a stress test—to see if any coronary disease, incipient or there. But the more we talk, the more he tends toward interp of late-blooming mild asthma. Confirmed a bit when he gives me basic breath strength test—blow into a tube. I come out below average for age and size, whereas given my good condition, we would expect at least average or above average.
I give Dr. Katz a detailed description of my symptoms and also talk with him about the breakup with Ellen and my feelings of depression. Since I have never had a stress test, Dr. Katz suggests I schedule myself for one with a local cardiologist, Dr. Flynn, and if that proves negative, as he expects it will, we might see about a pulmonary function test. Noting that the quality of the air in our region of New England is especially bad (pollution from industries in the Midwest settling over the Connecticut Valley), and given my below-average score when I blow into a tube (he jokes about the cardboard tube, called a peak flow meter, being state-of-the-art technology), his best guess is that I am suffering from a mild case, not unusual in our area of Massachusetts, of adult-onset or exercise-induced asthma. He gives me a prescription for an inhaler and suggests, should the shortness of breath continue or increase, that I take one or two puffs from it before swimming.
In my journal, this: “go for a swim, and feel again the constriction start in throat and chest, high up—also: cold weather and asthma discomfort go together, as with me. but: schedule for stress test [the first appointment I can get is in three weeks time: for February 5]… and may or may not get breathalizer, to see if that helps.”
Despite the fact that Dr. Katz, like his nurse four weeks before, sees little likelihood of coronary artery disease, and nothing urgent about my condition, my own sense of urgency—fueled by my loneliness—mounts.
“Busyness will only stave off loneliness for so long,” I write, a day after the exam. “Nobody to talk to about the ordinary stuff of life on an ordinary day. Miss that dearly…MLKing jr day [and] i weep away, while listening to spirituals: Marian Anderson and others—‘Give me Jesus’ ‘Deep River’… i am washed away with feeling…just so so sad sometimes…” The entry ends with a two-word paragraph: “sadness reigns.”
I continue to keep a record of my problems while swimming and exercising, and for a few days I try to believe—who wouldn’t?—that Dr. Katz is right: what I have is asthma, and not heart disease.
Less than a week after the exam, the shortness of breath while swimming coming more often and at shorter intervals, I decide to try the inhaler. I telephone Dr. Katz to tell him about my concerns. In my medical record for this day, Dr. Katz’s entry:
January 24, 1999
Phone call:
He has been monitoring his breathing difficulties while swimming. On a normal day he will swim up to 24 lengths w/o stopping. At times when his chest gets tight he will stop after 8 lengths and recuperate and then swim more shorter intervals. He also gets some tightness when he walks out in the cold. One of his sons has similar sx [symptoms]. His father died at age 70 [72] of emphysema. I had given him a prescription for an inhaler which I recommended taking 1 or 2 puffs of prior to swimming. He does have an ETT [stress test] scheduled in about 1½ wks.
The inhaler, alas, doesn’t help, and when it doesn’t, I return to my sense that there is something terribly wrong with my heart, and with my life, “worried re my heart,” I write, “tho david thinks it is asthma, but i take puffs of the stuff and it doesn’t seem to make a diff. I do 14 lengths pretty easily, but then the pool goes from 6 lanes to 2, and I am not up to fighting and circling and the rest… a bit of panic, apprehension, anxiety here.”
At the same time that my anxieties about my heart are increasing, I continue to record everyday occurrences that, in their happy abundance, would seem to belie anxiety. Among other events itemized on the day I first use the inhaler, for example: I talk with Miriam about wedding plans; I talk with a friend and former student, Bret Lott, whose novel has been chosen by Oprah Winfrey for her book club; I work on a course in Jewish American literature I’ll be teaching in the spring at UMass; I make final revisions on my novel. I also write about looking forward to driving down to New Haven the next day, where I will give a talk at the medical school, spend time with Jerry and Gail, and attend the closing on their new house with them.
Despite what seems a full, rich, and good life—and despite my trying to convince myself that it is a full, rich, and good life—my loneliness continues bone deep, and for the first time I find I am asking the same question Phil will ask: “but i do feel so alone, and with the drug not making a diff (on the first day), the isolation leads to that other realization: Who will take care of Jay?”
Ellen telephones, and talks about how she wants to get back together, and to care for me. Given the burdens in her own life (a ten-year-old son with a disability that requires constant, exhausting attentions), this seems to me as impossible in the future as it has proven to be in the past. (“I didn’t want to say anything before,” Miriam says to me in London, “but after all the years of raising the three of us and taking care of your brother and of Grandma, what were you doing with a woman with a disabled son?” A busman’s holiday? I reply. Miriam smiles, and repeats what she and her brothers have said before: “It’s your time now, Dad.”)
On January 26 I report on a conversation I have with Robert’s social worker, who urges me to talk with Robert about how he will spend his days when he’s back in the city.
i call robert at about 9 [PM], and he yells at me for waking him… and i feel so fucking lousy: same old, same old…not to be able to say back: hey, go fuck yourself—where do you get off treating me like this???
evening, after swim, sans progress [with inhaler], I am really worried that the pain between shoulder blades is some kind of blockage at the aorta…
But if I’m in such good shape, and if I have little in my history that suggests the possibility of coronary artery disease, and if my doctor diagnoses asthma and sees no urgency about checking out heart disease, why, even while in part of me I was rationalizing away symptoms, did I, at the same time, feel more and more certain that something was gravely wrong? Why, that is, were my intimations of mortality at least as strong as my inclination to denial?
On January 27, before I drive down to New Haven, I telephone Rich.
we shmooze and i ask if he minds my checking in re problem, and i go thru it with him…he asks me to fax him results [of the stress test], and not to hesitate re talking, also says: everything else is in my favor—200 cholesterol, low weight, no smoking, exercise, etc…it is rare for pain to be in mid back, but it does happen… what we want to do is to exclude things: so let us check this out… at our age, we need to pay attention to stuff, but even if we find something, there are lots of things we can do.
rich: sign of heart [disease] is that exercise makes the pain come, and then it goes away…
During our conversation, I also mention that once before—a year and a half ago—I had gone to see my doctor about pain between my shoulder blades. The pain had been there, on and off, for some time, and I had ignored it until, during a talk with my cousin Jerrold, who lives in Jerusalem, I had asked about his father’s death. Had it been peaceful? Jerrold said it had—that his father (my father’s younger brother, and the youngest of nine), eighty-two at the time, had been sitting at the table with them, eating and talking, when, after complaining of pain in his back, he had suddenly slumped over, and died.
I called for an appointment that day, and I saw Dr. Katz three weeks later. Dr. Katz did an EKG and, based on our conversation and my having noticed that the pain, which could last anywhere from one to ten minutes, sometimes occurred in the middle of the night, or when writing had drained me and I needed food, concluded (this from his notation in my medical record): “cardiac etiology of the pain is extremely unlikely. Thoracic [chest] aneurysm also unlikely. Most likely etiology may be gastrointestinal such as esophageal reflux or spasm.”
Looking back, one wonders if this pain—persisting for at least four years—was related to what may then have been, or have been becoming, coronary artery disease. I recall, too, and describe for Dr. Katz—as I now do for Rich—a time when, flying to Europe two years before this on my way to teach for a semester at the University of Freiburg in Germany, I awoke in the middle of the night in a very dark, quiet, and mostly empty plane (I was stretched out across several seats), to find my heart pounding away. I was sweating profusely, and felt a pain so severe in the middle of my back—along with dizziness and faintness—that I recall thinking, as if it were the simplest fact: I am dying. And then, as if from a Henry James story: So—is it here, at last, the great thing? I remember being afraid to get up and walk to a flight attendant to ask for help (afraid I was so weak and dizzy I might not make it), or to buzz for one and thereby create a crisis, and I recall thinking too: Well, Neugie, if this is it, this is it.
I had had some champagne before the in-flight meal, a glass or two of red wine with the meal, and cognac after the meal, and at the time I attributed the pain, dizziness, and weakness, along with the booming of my heart and the distinct sensation that if I did not simply lie there and wait—if, instead, I rose and tried to do anything—I would keel over and die, to a variety of possibilities: to the mixture of champagne, wine, and cognac; to being apprehensive about being on my own for the first time in many years; to a touch of the stomach flu; to in-flight turbulence while I was asleep; to a nightmare—night terrors?—I’d had but could recall only vaguely; to being in transition from the known (my life as single parent in Northampton) to the unknown (life as a single guy in a city and nation foreign to me), and to who-knew-what-else.
So I lay there quietly, and after a while I sat up, put my head down between my legs, and waited. In about seven or eight minutes, the physical symptoms, and the fear, passed.
Like Dr. Katz, Rich doesn’t see any connection between this experience and what I am experiencing now. But who knows? Rich says. Maybe the pain in my back two years before was a symptom of coronary disease, and maybe it wasn’t. And yes, he says, given the manner of your uncle’s death, your father’s heart attack at fifty-nine (which he survived), your symptoms, and your age (fifty-nine), the doctor probably should have ordered a stress test for you back then. But hindsight is easy, and the main thing now is to pay attention to the symptoms, and for us to stay in close touch with each other.
And this—staying in close touch with Rich about my symptoms—is exactly what, in my memory, I believed I had been doing all along.
When, after surgery, I begin telling my story to others, I am certain I was talking with Rich nearly every day beginning with the day on which I first had an episode of shortness of breath. More than this: in my memory, not only had I called Rich as soon as I came home from the YMCA, but I had also immediately telephoned Arthur, Jerry, and Phil, and then had begun checking in with each of them regularly.
When I go through my journal, however, I discover that it was not until I had seen Dr. Katz—four weeks after the shortness of breath first occurred—that I began talking with Rich and my friends about my symptoms and anxieties. I discover, too, that once Dr. Katz told me that what I was describing didn’t seem to indicate major heart problems, rather than being reassured, I became more convinced than ever that I had heart disease.
What was happening, I now believe, is that I was trusting what I was feeling more than what my doctor was telling me. Was I, as we commonly say, “listening to what my body was telling me”? Perhaps. But what I was experiencing in my body was in no way separate from what I was, in my mind, thinking—and what I was thinking seemed in no way separate from what I was feeling. More exactly: I found myself believing that my fears, anxieties, and premonitions, along with my bodily symptoms, were not unrelated to what I knew to be true; and what I knew to be true came to me in words that seemed quite plain: physically and spiritually, I was suffering from a sickness unto death.
On the day I first call Rich to talk with him about my concerns and about Dr. Katz’s diagnosis, I also talk with my father, who died at the age of seventy-two in 1976.
Ever since his death, when I’m especially troubled or have had especially good news, and usually when driving, I will talk with him, and our conversations invariably help me through to seeing things as they are and to understanding and articulating what I’m feeling about them. Conjuring up his presence—“Hey, Dad, it’s me again,” I’ll begin, aloud—I will look upward through the windshield and usually find him floating in the sky, Chagall-like, just above the car. In our talks I’ll generally report, first, on what’s going on with my children (his grandchildren), with Robert, and with my mother (his “Shugie” who, afflicted with Alzheimer’s since 1992, has been living in a nursing home). Giving him basic family news, though, is merely prelude.
Although my father was a failure in worldly matters—he never earned a living from his own businesses, went bankrupt before he was fifty, and spent the rest of his life as a clerk in a stationery store—and ineffectual and submissive at home, his judgment always seemed to me sound, and he seemed never to complicate things more than was necessary. Given the grim and unhappy nature of so much of his life, it was a mystery and wonder that this was so.
“Shit or get off the pot,” was his routine response if I expressed indecision. If I invited his opinion about a specific situation—should I do A, or should I do B?—he never turned the question back to me (as in: “Well, what do you think you should do?”), but instead would give a direct Yes or No answer—Do A, don’t do B—and if I asked for reasons, he gave them without elaboration: C, D, E, F, G.
Though for most of his married life he was consumed by frustration and rage (he had a violent temper, and would often slap me and knock me around)—ashamed because he could not support our family and give our mother the life he wanted to provide for her, and humiliated regularly by my mother for his failure to do so—and though he and I, until the last few years of his life, were seldom able to have an easy, extended conversation, I had come to count on his direct, no-nonsense opinions and responses. More often, though, fearful of coming to him with a problem since doing so could make him attack and humiliate me, I relied on what I imagined he might have said to me had he been capable of being the man he wished he could be, and the man I wished he would be.
And so, when times are especially good, or particularly difficult, I conjure up his spirit, and we talk. At these times, though imagined, he is totally present; though kind and loving, he is brutally honest; though idealized, he is the most realistic and practical of men.
We talk most of the way down to Guilford to Jerry and Gail’s new home and on the way back from New Haven the following day, and words, feelings, and tears flow easily and in abundance. As often happens during these conversations, his good judgment and his kindness—both having increased enormously with the passage of time—help me through.
After giving him news about his grandchildren, his wife, my forthcoming book, and Robert, I tell him that all is not well: that I am becoming more and more certain my heart is fatally diseased—broken, flawed, failing—and that I am frightened I am going to die soon.
I immediately apologize for complaining—of course I realize how blessed I am: in my work, my job, my home, my friends, my children—and I start talking about people I know who have real troubles and who don’t have the wherewithal in life I have, and when I do, my father interrupts me. “Listen, sonny boy,” he says, “it doesn’t matter what troubles—what tsuris—others have. Your tsuris is still your tsuris and you shouldn’t bury it.”
Do I remember a radio play I was in, he asks, called “No Shoes”—about a man who complained because he had no shoes until he met a man who had no feet?
“Well, it’s certainly not so hot to have no feet,” my father says. “But if you have no shoes—like now, in the middle of winter—that’s not so hotsy-totsy either.”
“Not a lot of time to dwell on the sweetness of being with Jerry for two days, [or] my talk to Yale doctors,” I write on my return, and then: “my ride there and back, alone. Weeping when i talk with my dad and tell him just how scared i am—that I might have heart problems and nobody to take care of me…this is what hurts more than the problems.”
The day after this, I take myself to my psychotherapist’s office for the first time in more than a year. “Going to session with D. v v helpful: a way of talking here that i cant quite do with friends,” I write. “And we agree that i will go for 6–8 weeks, and get some work done on me—not my children, not Ellen, not etc…but me, and the elusiveness of what i have always desired so deeply: love and companionship.”
The next day I travel down to New York City by train, where I meet with my editor and publicist and spend time with Eli. I also, this week, begin regularly telephoning Arthur, Jerry, and Phil.
Two days later, upon my return to Northampton:
V worried re my health.* V clear in the city—walking any distance in v cold weather, and the pain starts—usually between shoulder blades, and often, too, in chest… shit!
I find myself having to go inside stores—or looking for pretexts to. Granted, it is bitter bitter cold, and etc…
the usual from all—helfant, et al—is: get it checked out, which i am doing, but i am so fearful that i am just going to keel over, also: sense of aging—failing of powers, etc.
I now write at greater and greater length in my journal, and do so not only first thing in the morning, but in the evening too. I keep itemizing all the things I have to be happy about, as if to convince myself there is no reason to be depressed, and I write about my talks with my friends (“all the buddies call back—sounds to [Phil] like exercise induced asthma, the stress test will show…also suggests chest xray [to check for dissection of aorta], and to call him after, sure you worry, he says, one day, you’re fine, and suddenly…”).
I telephone Dr. Katz, who suggests I get some nitroglycerine, and that I take it when the pain comes and see if it stops the pain. He is now more inclined, given my descriptions, to suspect coronary disease, and he advises me to go easy between now (Tuesday evening) and Friday morning, when I am scheduled for the stress test.
relieved, at first: to have somebody say—maybe it is your heart… and then, lying on floor and doing stretching exercises, i begin weeping, oh neugy, neugy, after all you have been thru, for this to happen, and now. I am sentimental, maudlin: imagine people saying—gee he was in such good shape, and what a good heart, and how he doted on his children…and and: i just break down, imagining bypass surgery, a long illness, recovery, and who to care for me?
During the three days between my call to Dr. Katz and the stress test, despite moving as fast as I can on long winter walks, I do not get anything resembling the kind of acute pain I’d been having, and when mild pain does come and I put a nitroglycerine pill under my tongue, it makes no discernible difference.
In Brooklyn the previous week, however, walking with Eli near Prospect Park, the burning sensation in my back becomes so severe that I find frequent pretexts to stop so as to give myself respite from the pain—I remark on the architecture of some building, or an item in a store window, or somebody passing by, or I share a memory with Eli of what Brooklyn was like when I was growing up here.
I read the sections on heart disease in Sherwin Nuland’s How We Die, and these are “encouraging, longterm,” I write. “It is natural for the system to begin to run down; and [what Rich has been telling me] does seem true: lots of things we can do for the heart to ameliorate problems, to prolong life, etc…a major area of progress, biomedical.”
More sobering, though, is Nuland’s description of the very ruse I have been using to disguise my condition. Writing about the common pattern by which severe coronary disease manifests itself, Nuland describes a patient of his, and says that while he observed him and listened to him, he was reminded of a practice commonly resorted to by so-called cardiac cripples in order to disguise the advanced state of their illness: A patient feeling the onset of an anginal attack while on his daily stroll finds it useful to stop and gaze with feigned interest into a shop window until the pain disappears. “The Berlin-born medical professor who first described this face- (and sometimes life-) saving procedure to me called it by its German name of Schaufenster schauen, or window-shopping.* The Schaufenster schauen strategy was being used by Giddens to give him just enough respite to avoid serious trouble…”
When Rich calls—and he is calling once or twice a day now, to ask how I am doing, and—his pretext?—to talk with me about the book he is writing—I tell him about my time in New York, and about Schaufenster schauen and Nuland’s description of the behavior of “cardiac cripples.” To comfort myself, I try also to use some of what I have learned during the past few years from people I’ve met who have recovered from long-term mental illness, and apply it to heart disease—that is, how to live with a condition that is sometimes distinctly unpleasant and frequently terrifying, but, like any long-term condition that comes with being human and having a full and complicated life, manageable.
“Do sense mortality,” I write. “These things happen—and if something in an artery, valve, whatever, suddenly stops fcning, then it does, and i need to take care of it, manage it. all the lessons of [Transforming Madness]: that finding out i may have what is called coronary disease is not a death sentence (except ultimately)—it simply means i will have a condition that needs care and management.”
On the day before the stress test, I treat myself to a massage and come away “encouraged by fact that the massage gave me my best day in weeks!” I experience no pain in my back, no shortness of breath, no fatigue. I have dinner with a friend, Doug Whynott, who was Massachusetts state javelin champion in high school and who thinks my problem is muscular—he says he had similar problems a few years back: pain between his shoulder blades that came on slowly and cut into his breathing.* I am both very frightened—convinced my condition is as advanced as, within a week, we will learn it is—and encouraged: what I have is merely a muscular problem (so-called swimmer’s shoulder?) resulting from all the years of swimming and playing ball.
“V v scared,” I write on Friday, February 5, 1999, the morning of the stress test, “tho less so the last day or two. I made it! no crises from time of check up to time of stress test—3 weeks.”
At 11:15 I walk to Dr. Flynn’s office a block away, fill out some forms, and when I am called in to the examination room, talk with the doctor for a few minutes, after which the nurse hooks me up to an electrocardiograph machine to get a reading before I step onto a treadmill.
The heart is, as Rich has explained to me, partly an electrical organ, but even when there are severe blockages within the heart’s arteries, the electrocardiogram may not reveal tell-tale abnormalities. By placing electrodes at and across various points on the heart and recording electrical activity, it becomes possible to get information concerning the location and extent of changes, or of damage. When there has been a heart attack (what physicians call myocardial infarction [MI]: the death of part of the heart muscle), the part of the heart that has died is replaced by scar tissue, and, since scar tissue does not conduct electricity, the EKG may reveal this development. But though the EKG can uncover problems, Rich explains, it is a crude, often inaccurate means of evaluating the heart: it will sometimes suggest abnormalities that, upon further investigation, prove nonexistent or of no consequence—and often it will not recognize problems, minor and serious, that require attention. In addition, whatever the EKG reveals must be read and understood, always, in the larger and more specific context of the individual patient.
Dr. Flynn’s nurse performs the EKG and brings the results to Dr. Flynn. I am left alone for a while, sitting on the examining table, from where I watch Dr. Flynn talking on the phone. As the minutes go by and I continue to sit by myself, in my underpants, wondering what the delay is about, I feel strangely intimidated: if I walk into the reception area to ask if they’ve forgotten about me, I imagine them scolding me and ordering me back into the examining room—asking me why I am bothering them, and what I am doing in their office without any clothes on…
I am anxious, frightened, and worried, especially when I try to figure out what I might say to my children if the news is as bad as I fear it will be.
After about ten minutes, Dr. Flynn returns to the examining room and tells me that we are not going to go ahead with the stress test.
“I think you’ve already had a heart attack,” he states.
“Oh shit,” I say.
“Something happened,” he says. He has called Dr. Katz’s office to get a fax of my most recent EKG in order to compare it with the EKG his nurse just performed. There is no need for a stress test now, no matter what the previous EKG reveals, since the point of a stress test would be to determine if there were any coronary problems that needed attention. (In a stress test, a continuous EKG reading, along with blood pressure readings, is taken while the patient walks on a treadmill whose speed and incline are gradually increased so as to raise the heart rate and enable us to see what happens when the heart is subjected to “stress”—to a greater and greater need for blood and oxygen.)
Something happened, Dr. Flynn repeats, though it is not clear, from the EKG, exactly what—but he tells me that it is now clear why I have been having these episodes of shortness of breath and pain in my back. He asks if I can meet him, within fifteen or twenty minutes, at Cooley Dickinson Hospital—about a half mile away—so he can do an echocardiogram. He expects that the echocardiogram, a film of my beating heart (much like the sonograms a woman undergoes to monitor the developing fetus during pregnancy), will show us exactly where the heart attack occurred, and how extensive the damage is. What he will look for in the pictures of my heart are those portions of the muscle that, when the heart contracts, do not move.
I walk home in a daze, yet feel curiously relieved: at least I know what the problem is—I have had a heart attack—and then drive to Cooley Dickinson Hospital.
Dr. Flynn and I meet in a small room crowded with equipment. Dr. O’Brien, one of Dr. Flynn’s colleagues in their cardiology practice, is in the room with us. He is the doctor Aaron has been seeing for his heart problem, and though the three of us, along with the technician who will perform the echocardiogram (anointing my chest with vaseline-like gook and tracing paths along my skin with a hand-held instrument that looks like a detachable shower-head from a bathtub), are shifting around in a very small space—the two doctors and the technician talk with one another and often refer to me by name—Dr. O’Brien never says hello or acknowledges my presence. This confirms the dreamlike sense I have that I am both very much there (I’ve had a heart attack I’ve had a heart attack, I keep repeating) and that I am not there at all—that what is happening is happening to somebody else who happens to look like me and is also named Jay Neugeboren.
Dr. Flynn studies the echocardiogram on the monitor while the technician performs it, and when it is completed he runs the film through again. He seems puzzled. To his surprise, he tells me he cannot find any damage—any portion of my heart muscle that is not moving. Instead, what he does discern is a general weakening of the heart muscle.
“Your heart is not contracting as strongly as it should,” he tells me. I have already taken a beta-blocker he prescribed in his office (beta-blockers are medications that slow the heart rate and the force of contractions, and lower blood pressure by blocking the beta-adrenergic receptors of the autonomic nervous system—that part of our nervous system over which we have no conscious control), and he says that this fuzzes things up a bit. He looks at the film once more, and still cannot find any area of dead muscle.
In his letter to Dr. Katz, dictated after the EKG and before the echocardiogram (again: how memory transforms events! I thought I had gone straight from his office to the hospital, and have no memory of doing anything else—of the hours in between—yet the letter indicates I had the EKG in the morning and the echocardiogram in the afternoon), he begins, “Mr. Neugeboren came to the office today for an exercise test.
As you know, he is a 60 year old gentleman who has a history of elevated cholesterol [220 at most recent test, two months before] who noted a decrease in exercise tolerance beginning in December of last year. He swims regularly and over the past month noted a significant decrease in his exercise tolerance with easy fatigue and shortness of breath. He also has had intermittent pains in his mid back associated with exertion and cold weather. He denies any period of prolonged chest pain and has not had rest pain.
After noting that my blood pressure was 150/80, my heart rate 70 and regular, he states: “Cardiac exam was unremarkable.” The EKG, however, is “suggestive of a possible recent anteroseptal infarction [MI in the septal portion of the left ventricle],” which he suspects occurred before the first episode of shortness of breath on December 21. “Other potential etiologies for these EKG changes include a cardiomyopathy [disease of the heart muscle] which is certainly less likely.”
After the echocardiogram, however, Dr. Flynn comes to an opposite conclusion. “Findings cannot exclude coronary disease,” he reports, “but seem most consistent with a cardiomyopathy.” In the echocardiogram report, he also notes other findings: no evidence of aortic stenosis (a narrowing of the aortic valve), mild mitral regurgitation and borderline left atrial enlargement (of no consequence), and overall left ventricular ejection fraction “calculated at 40–45%.” He now tells me that he does not think I’ve had a heart attack, but a cardiomyopathy, most probably from a virus that is slowing down and weakening the force at which my heart is pumping blood.
He recommends catheterization and tells me I should call his office when I get home and arrange for his partner, Dr. Beck, to perform an angiogram at Bay State Medical Center (a half-hour away, in Springfield, Massachusetts) sometime soon, so we can find out exactly what’s going on. In the meantime he gives me prescriptions for Atelenol (a beta-blocker) and for Vasotec (a vasodilater, so called because it dilates blood vessels, thereby reducing pressure within the circulatory system), tells me to use nitroglycerine if I have discomfort, and—as I’ve been doing for several years—to continue taking one aspirin a day. (Blood clots in our arteries are formed by a complex interaction between clotting elements in the blood and small cells called platelets, which are designed to patch up tiny holes in our blood vessels. We have been using aspirin, a derivative of willow bark, as a medicine for at least two hundred years, yet it is only since 1971 that we have learned that a small amount of aspirin, by reducing the stickiness of blood platelets, makes them less capable of generating blood clots, and thus is of great help in reducing both heart disease and strokes. This property of aspirin was first noted in 1950 by Lawrence Craven, a family physician in Cleveland who, observing that giving aspirin to children following tonsil removal resulted in increased bleeding, suggested in a series of papers which, during his lifetime, went unnoticed that aspirin might also reduce the tendency of the blood to clot following coronary thrombosis.)*
“I think it’s viral,” Dr. Flynn tells me again just before I leave.
Back home ten minutes later, I telephone Dr. Flynn’s office and say that Dr. Flynn said I should set up an appointment with Dr. Beck for an angiogram. The secretary tells me that Dr. Beck is booked for several weeks. I can make the appointment now, or call back. Although I am wild with anxiety and rage, I remain outwardly calm. Talking on the phone with a stranger who works for a doctor I have never seen, and feeling mildly panicked—if I let the anger fueled by my helplessness show, will they simply tell me to go to another doctor? will I have to go through the whole routine again?—I am persistent and insistent: I want an appointment as soon as possible. When the secretary looks through the schedule for a third time, she tells me she can squeeze me in for a brief office visit with Dr. Beck in the middle of next week—not for the angiogram, but to confer about setting up an appointment for an angiogram.
I hang up and telephone Rich, who had called earlier and left a message asking me to call him as soon as I got home, and to have the doctor fax him the results of the exam right away. I go over what has happened, beginning with Dr. Flynn telling me, first thing, that I’ve already had a heart attack—and when I get to the end of the story and tell Rich that the last thing Dr. Flynn said to me was that he thinks the problem is viral, Rich explodes.
“It’s not viral, goddamnit—I want you in the hospital as soon as possible!” he exclaims, and he now insists I go to Massachusetts General Hospital, and not Bay State, because Massachusetts General is “the best” and because he knows several excellent cardiologists there. He will call ahead and help with arrangements. Catheterization is no big deal, he says, but if they have to go beyond catheterization and do angioplasties or a bypass, he wants me where he knows the doctors and knows they are “the best of the best”—the most experienced surgeons, the best diagnosticians.
(“My medical antennae were tingling with that sense I always get when I know something’s terribly wrong,” Rich will later tell me. “My initial goal was to keep you from total panic while getting you to Mass General, and as time went by, my anxiety deepened—thus the more frequent calls. But I knew how serious the situation was, and there I was, three thousand miles away, agitated as hell. I knew the clock was ticking, and I knew where you could get the best help—two hours down the road.”)
We talk for a long time, and Rich goes over everything with me carefully, continuing to insist that I go to Massachusetts General Hospital. He is concerned about my ongoing discomfort, but—to reassure me?—says that the fact that I have been able to swim so strongly is a good sign.
“I want you to know I am here for you one hundred percent, Jay,” he says, but, alas, “here” is southern California, and what is imperative now is “to get the very best and most expeditious help” for me he can, and as soon as possible.
He also talks about how fortuitous our reconnecting after many years apart has been, and about how much this has meant to him. (After having read Imagining Robert, Rich wrote me a long letter—not only about how moving he found the book, but also about how touched he was by our many affinities, and how close he felt—much like a brother—to me.)
In my memory, Rich—high scorer on our synagogue’s basketball team, undefeated in singles through three years of varsity tennis at Erasmus, hard-hitting third baseman for the Tufts College baseball team, and a guy who helped put himself through college and medical school by winning substantial sums of money at poker—was a tough, fiery ballplayer, as competitive as any guy I knew. Though he had a most winning smile off the court, in the schoolyard he was all business—all elbows, hips, butt, and shoulders under the basket—a guy who would go through the proverbial brick wall after a loose ball—and, on the perimeter, a guy with a soft, deadly touch on his jump shot.
Now, however, as I’ve been learning from conversations and letters, and from manuscripts he’s been sending me, though he still plays tennis regularly and competitively, he has mellowed in unforeseen ways. In his talks with me, and during our times together—in Massachusetts, Denver (where his two children live), and California—especially with his children, and when talking about his patients, he will be the most attentive and patient of listeners, the most thoughtful and gentle of men.
In his life away from the hospital and medical school, in his home in Redondo Beach, he now devotes significant portions of each day to Buddhist meditation, to practicing piano (Chopin, Beethoven, Mozart, Schubert), and to that reading and writing by which he is attempting to understand what to him are the real, mysterious, and often mystical relationships of our minds to our bodies.
A brilliant researcher and clinician who has authored several textbooks on cardiology, along with several hundred medical journal articles, and who pioneered studies in angiography, electrophysiology, and nuclear cardiology, in recent years Rich has become especially interested in those forces, beyond scientific measurement, that he believes frequently prove crucial in matters of life and death. He is, in fact, well along in the writing of a book that describes how many of his patients have lived on against all ordinary rules of medical diagnosis and prognosis—and how others are able, in what are for them most uncharacteristic ways, to come to peaceful accommodations with illness and with death.
“Rich urges me to call anytime, just to talk,” I write. “This is very important, he says. And explains to me why i am going to be okay—the really good news is that we have no localized damage to any part of the heart so far, it seems, and what we want to do most is to preverve as much of this muscle as possible.”
Rich has become such a sweet new age type, for such a brilliant, formerly competitious Brooklyn boy: says he feels our reconnecting was meant to be…and this is why, etc…he has felt strange and definite sense of communion with me.
After I talk with Rich—he is going to call people he knows as soon as we hang up, and I am to call him back that evening, 9:30 West Coast time—I telephone Jerry, Arthur, and Phil.
Phil and Arthur say that they defer to Jerry and Rich, and Jerry suggests I come down to Yale-New Haven instead of Massachusetts General, where he can arrange things for me, and where I can stay over at his house before and after the angiogram. He says he will make calls to cardiologists he knows in both New Haven and Boston, and this is when I say to him—as I will to Rich when I call him back—that he and the other guys should just talk with one another and then tell me what to do.
Sharon, a woman I have known for several years—we’d been friends, but within the past several months our relationship has become romantic—is supposed to come by for dinner, and our times together, our telephone conversations (she lives in Boston), and the warm, eager way we look forward to being together are, I tell myself, proof either that I am correct in my conviction that things are definitely over between me and Ellen—or that I am more profoundly shallow than I care to know. Not for nothing, I remind myself, am I in these matters, as my friends keep telling me, perhaps the world’s oldest living teenager.
Ellen calls, and during our conversation, I tell her about what happened at Dr. Flynn’s office. When she asks if I would be willing to have lunch with her the next day, I say no—that I don’t think it would be a good idea (for me); when she asks if there is anything she can do for me, I say no again, that there isn’t.
Shortly after I hang up, Dr. Katz calls and tells me he has spoken with Dr. Flynn. “david katz v concerned,” I write. “Says he is surprised and shocked, really, think he may feel he missed this some [by] not thinking coronary disease for a few weeks.”
“Well,” I comment. “He is human too,” and add: “so are we all so are we all.”