The Open Heart Club

by Gabriel Brownstein

  As Steno forged forward in his studies, penetrating the layers of material reality, his religious crisis deepened. He visited the Biblioteca Laurenzania, poring over Greek and Hebrew manuscripts, running through gospels and translations. In 1671, he published De solido, his last great work, which outlined the basic principles of geological study, principles that still hold true today. Two centuries would pass before the great Scottish geologist James Hutton teased out the implications of this work and described what Hutton called “deep time,” the eons and eons it would take for the earth to form itself according to Steno’s principles, but careful seventeenth-century readers understood where Steno was heading. Liebniz hoped that Steno might be able to “draw from [De solido] conclusions regarding the origin of the human race.”

  Steno was verging on unspeakable conclusions, things no one in his world would dare to think. Walking in the night on a dark street in Pisa, he heard a voice cry, “Come over to the other side,” and something inside him broke. Steno never knew where the voice came from, but he knew what it meant, and even as the censors were reviewing the manuscript of De solido, he converted to Catholicism. Almost simultaneous with Steno’s conversion, Swammerdam in Leiden suffered a breakdown. Like Steno, he had never married, and like Steno he was at the summit of his career. And shortly after Steno did, Swammerdam gave up his research. He fell under the sway of a mystic named Antoinette Bourignon, a wealthy lapsed Catholic who had a grotesque harelip and who preached the incipient arrival of end times. Steno and Swammerdam never met again.

  In 1675, Steno was ordained a priest. In 1677 he was made a bishop. The church sent him to Hanover, where the population was largely Protestant. Steno sold his bishop’s ring and silver crucifix and gave away the money to the poor. He wore rags, alienated his parishioners, and wrote to Rome, begging to be relieved of his duties. He was, he said, like “a dead man who feels nothing.” On November 21, 1686, gripped by intense abdominal pain, he wrote,

  To my usual ailment, colic, it seems now that the stone has been added. Last night, I had the most terrible pains in the os sacrum. After an enema, they have shifted to below the os pubis, and from this morning it seems as if they are increasing, as if an inflammation is forming there. Not a drop of urine comes. I believe that the stone has embedded itself in a fold in the bladder, and that there, besides causing pains, it is causing inflammation of the mucous membrane of the bladder and will be the cause of my death.

  Four days after writing those words, Steno was dead.

  Jacques Lacan, the French psychological theorist, once defined trauma as “a missed encounter with the real.” Steno approached the abyss, the blank material underpinnings of life. He saw, more than anyone around him, the base material nature of life, the real—and the effect of this vision was like trauma. He had to look away.

  His description of the muscular structure of the heart would have no medical utility until three hundred years after his death. The heart defect he discovered would not be named for him. No doctor would attempt to diagnose and treat a child with tetralogy of Fallot until Helen Taussig did in the 1940s. It would be centuries after Steno’s death until the Western world could grapple seriously with the formation and malformation of the human heart.

  17.

  I GOT HOME FROM my visit to Dr. Freed, and I got the news that my sublet in downtown Brooklyn was done. In July, I taught a college prep class at the New School. In August, I spent a long weekend at my parents’ house in Vermont. I still hadn’t heard back from Dr. Freed. I still hadn’t decided about the cardiac catheter test. It was scheduled, but I wasn’t committed to it, and any conversation with my parents that touched on any of this led to yelling and screaming. Then, at the end of the month, I went to visit my friends Jeff and Anne in Nantucket. They were getting married, and we toasted with champagne, and I confessed that I was getting kicked out of my apartment. Anne and I played another round of “Gabe, What Are You Doing with Your Life?”

  I took a ferry and a bus and then a train home from Boston. Summertime in New York, late August, and it stank. My mailbox was full of rejections from literary magazines and bills, and buried in there, something from Boston Children’s. I fumbled for my keys, got my bags inside my apartment, and opened the letter, sitting on my bed. I remember the smell of suntan lotion that was still on my face, the feel of my shirt collar on my sunburned neck. Dr. Freed’s letter was three-pages long, single spaced. It was addressed to Dr. Rosenbaum. I was cc’d on the bottom. I must have read it three times, sitting there on my fold-out futon, without opening the windows of the apartment or getting myself a glass of water. I still have the pages, and they’re filled with my scribbles and penciled marginalia, diagrams, underlining, and notes.

  Next to dyspnea, I wrote, “trouble breathing,” next to cyanosis, “discoloration of the skin,” and next to orthopnea, “feet swelling (?).” According to Dr. Freed, I had none of these. He wrote, “He’s done very well, but recently has been noted to have increasing right ventricle dysfunction on echocardiogram.” Never had I read such a thorough discussion of my own condition.

  In the group [of adult tetralogy of Fallot] patients that has significant symptoms, we have started to replace the pulmonary valve with a homograft in an attempt to restore competent pulmonary valve function. This is, however, a temporizing measure since the homografts eventually become regurgitant and thus the children or adults end up with significant pulmonary regurgitation again and occasionally stenosis when the homografts calcify.

  My doom was spelled out right there, but I took comfort: he didn’t seem to want me to have surgery! On top of the second page, there’s one sentence I underlined thickly. “I suspect that Mr. Brownstein is somewhere along the path of tolerating the pulmonary regurgitation very well to becoming significantly symptomatic.” But where was I on the path? How fast was I traveling? “It may be years or even decades before Mr. Brownstein becomes symptomatic from right ventricular dysfunction. Since we know RV is dispensable from our Fontan experience, I suspect that Mr. Brownstein will have no difficulty as long as the tricuspid valve is competent.” By “RV” I knew he meant right ventricle. “Fontan experience” refers to a treatment of infants born with a single ventricle: blood can be rerouted to the lungs, and the left ventricle alone can keep a child alive.

  The idea that I would be fine without a pulmonary valve and then without a right ventricle was the very idea that Marlon Rosenbaum’s research, and the research of adult congenital cardiologists, was challenging, but as yet there was insufficient data to support it. Dr. Freed was weighing the danger of heart surgery against the danger of waiting and tentatively leaned toward the latter. Had I read more carefully—had I been able to listen to both doctors objectively—I might have intuited the two doctors’ basic agreement and Marlon Rosenbaum’s as yet unsubstantiated belief: since treatment couldn’t be adequate after the heart failed, the surgeons might have to attack before there was heart damage, which was to say, prophylactically, which was to say now. But I didn’t think like that.

  “Years or decades,” I read through the scrim of my denial. Who can say they will be healthy longer than that? On the bottom of the second page, Dr. Freed came to his conclusion:

  Since we don’t have a great solution, since he’s unsymptomatic, and since the operation is likely to be a temporizing procedure rather than a permanent cure, I think we should be conservative at this point.… If surgery would not be considered at this point, then I’m not sure that it’s necessary to do a cardiac catheterization to determine the degree of pulmonary regurgitation. This would be semi-quantitative at best, and I don’t think it would alter the decision to be conservative.

  I put down the letter. I believe I may have pumped my fist. It was the reprieve I had longed for. I didn’t have to take the test! I called Jeff and Anne, and they were happy for me. Jeff thought it was a nice pun, the doctor’s name being Freed. I’d been freed, hadn’t I?

  It was Sunday, late August. Tomorrow was the first day
of school, and I was teaching an introductory English class at Barnard College. Tuesday, I was scheduled for my catheter exam. After that, I had to move to my new apartment. There was no reason to call Dr. Rosenbaum’s office now. I would do it first thing in the morning, and I would cancel.

  So I did that. I left a message on his answering service before I sat down to my cup of coffee at my desk, turned on the computer, and reread, for the umpteenth time, the first sentences of my novel. I lost my troubles for a moment in my coffee and my writing. I was stepping out of the shower when the phone rang. I let the machine pick up.

  “It’s Dr. Rosenbaum,” said a glum voice. “Calling about your heart.”

  I didn’t pick up the phone.

  18.

  SO LONG AS I shut my eyes to my troubles, they weren’t there. This was how I had always lived my life. I had heard Dr. Rosenbaum’s advice; I had read Dr. Freed’s letter. Where it said “years or decades” on the page, I emphasized the second word, “decades,” but in the back of my mind, I heard the first, “years.” In some ways, Rosenbaum’s position was much more optimistic than Freed’s, whose letter, read in its darkest, starkest terms, spelled out my doom. Once my heart started to fail, Michael Freed seemed to be saying, there was going to be no way to save me. I shoved that idea away, but it leapt out at me, in the middle of the night, in rides on the subway, attacks of anxiety that made it hard to breathe. A couple of years of health might be all I had left.

  Rosenbaum had described to me his patients in heart failure, and Freed had described the regurgitant hearts, the leaking, stenotic homografts, but I swallowed those thoughts as quickly and as forcefully as I could. I continued drafting and redrafting my static novel, teaching my adjunct courses, and rooting for the New York Knicks. My leaking, failing heart was the monster under the bed. To do the cardiac catheter test would be to face it, which I was too afraid to do. I wanted to be safe under the blankets. I wanted to be normal. As a heart patient, I was in the closet, and I was repressed—I was closeted most profoundly to myself. This point—this connection between trauma and self-delusion—was made for me most forcefully by Alan Sabal, a congenital heart patient a decade older than I am.

  “Your body holds the reactions to the invasiveness of surgery,” said Alan, who had an operation to repair subaortic stenosis in 1962, when he was ten years old. “The body doesn’t understand, particularly at that age; as a young child, you don’t know where this stuff is coming from.”

  Sabal is ebullient and youthful in his early sixties, chubby and charming, quick to laugh, and easy with intimacies. He has a neat goatee and a warm smile, and at our first lunch together at the café near the Stuyvesant Town apartment in which he lives, he confided in me the twin struggles of his early life. Speaking rapidly and seriously, he explained to me that in his childhood in the 1950s and 1960s, both his sexuality and his heart condition were unspeakable. His homosexuality was categorized by the psychiatric establishment as a mental disorder, something he could not express. His cardiac condition, similarly, in a middle-class Jewish home in the Bronx, was something that dared not speak its name.

  In the café, screaming children sat to the left of us. Alan, in hushed and urgent tones, described his struggles to repress both his sexual desire and the trauma of his health condition. Both haunted him. Both were secrets. When he was little, no one had told him anything about his heart. No one had prepared him for his invasive treatments. He knew something was wrong, and the doctors were concerned, but no one explained anything.

  “My parents didn’t tell me why I was coming back to the hospital,” he said of the heart surgery he had when he was ten. “They said I was going for more tests.”

  Spooked, little Alan threw a tantrum. His parents packed him in the car anyway and took him to Manhattan. In those days, parents didn’t stay with their kids before surgery. His mother and father said good-bye. No one mentioned the operation. Alan was left in a room over night for pre-op. There was another boy in the bed next to him, and the two kids began whispering.

  Nowadays, the family of a ten-year-old going in for surgery on his aorta would get a lot of coaching. There would be a meeting with a social worker and maybe even a psychologist. Doctors would follow established protocols and offer specially printed brochures, describing the procedures in careful, age-appropriate language. A number of good kids’ books are available for children with heart conditions and their parents, to help them make their way through surgery. There are beds for parents in patients’ rooms so they can keep their children company through the night.

  Alan Sabal got none of that. His parents couldn’t bear to mention what was going to happen. (This seems to me like a dark variant on an old Jewish joke. Of course, his parents didn’t want to talk to Alan about surgery. They didn’t want to upset him.) He was in the old Flower Fifth Avenue Hospital up near Central Park. From the window of the shared room, he could see the tracks of the trains heading north to Westchester. He couldn’t sleep, and neither could the kid in the bed next to him, a twelve-year-old.

  What was he there for? The other boy asked Alan.

  Alan didn’t know.

  The kid explained that this was the room they kept you in before surgery.

  So in the middle of the night, Alan learned of the surprise that awaited him in the morning. He guessed it would be surgery on his heart.

  Nurses arrived before dawn. At 5 a.m., terrified and confused, Alan was washed down. They shaved his hairless chest. They used stinging antibiotic soap, affixed the suckers of the heart monitor to his skin, and rolled him on a gurney into a tiled and busy operating room.

  “The last thing I remember before going under, I got an enema,” he told me. “It must have had anesthesia in it. All I remember is getting something up my butt and getting taped.”

  Subaortic stenosis is a narrowing of the aortic valve and in many cases involves a narrowing of the aorta. Alan’s chest was sawed open, he was connected to a heart-lung machine, and surgeons reworked his valve and his aorta so more oxygenated blood flowed out to his body and his brain. He awoke in a ward full of postoperative adults, all of them groaning and stinking and half-alive. Alan wavered in and out of consciousness. His parents were allowed only short, intermittent visits. For the most part, he was alone. Initially, he did well in his recovery, but he was moved from post-op to the pediatric wing too soon. Orderlies wheeled his bed in the middle of the night, IV tubes swinging and rattling around him. The door to pediatrics was too narrow for his gurney, and so Alan, with his sawed chest, was lifted and manhandled and passed to a new rolling bed. He developed postoperative pneumonia. His fever spiked. The surgeons returned and stuck a tube down his throat and suctioned Alan’s lungs. He spent three weeks in the hospital. He remembers the nights, his only comfort a little transistor radio he kept in the bed with a single headphone he stuck in his ear, listening to the hits of 1962: “Roses and Red” by Bobby Vinton, the Four Seasons singing “Big Girls Don’t Cry.”

  As a man, Alan learned to express his sexuality comfortably. He lived through the AIDS crisis. But the horror of his early surgery was something silent and buried deep down, and the reality of his heart was something he could not face. After his childhood cardiologist retired, Alan didn’t see another doctor to monitor his heart, not until 2011. But the trauma kept coming back to him. He recounted to me a time, during those years lost to care, when he was in the mountains in California at a retreat, lying on a table, getting his back massaged, when the childhood surgery burst into his mind.

  “The pre-op came flashing back.” He remembered the violation of his anus, the doctor’s taping him shut. “All of a sudden I was screaming, ‘Get away! Get away!’ I was bawling. I was crying. All of this emotional stuff of the heart coming out of me.” When, in his fifties, he was told he needed heart surgery again, Alan, like me, panicked.

  I suppose we all seem a little crazy—Bridgette, Alan, and me—refusing to face our problems and risking our lives as a consequence, but w
hen I consider our collective reactions, they don’t seem to me entirely neurotic. It’s perfectly reasonable to want to avoid heart surgery. Having had the experience once, it’s natural not to want to have it again.

  Nobody wants to be sick. These days, healthy is a synonym for normal, whereas sick means crazy, evil, or unkind (or, I guess, for a skateboarder, gnarly). In one of my favorite novels, Don DeLillo’s White Noise, there is a comic-sage, Murray Siskind, a sportswriter turned Elvis scholar, whose words are intended ironically but seem to me absolutely true. “Fear is unnatural,” Murray opines. “Lightning and thunder are unnatural. Pain, death, reality, these are all unnatural. We can’t bear these things as they are. We know too much. So we resort to repression, compromise and disguise. This is how we survive in the universe. This is the natural language of the species.” I was only doing what everybody does. I knew there was something wrong with my heart. The problem was engraved on my body by the big scar right down the middle of my chest. But I couldn’t face it. The only available options were repression, compromise, and disguise. I didn’t run from my doctor out of ignorance. I ran because I knew too much.