Open Heart

by Jay Neugeboren

  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’v
e 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 lef
t 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.)*