Open Heart Page 7

  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.

  January 19, 1999

  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 puf
fs 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 ab
out 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.