The Open Heart Club

by Gabriel Brownstein

  I had an idea that maybe after 2 a.m. the V-tach wouldn’t come anymore. The night before I had slept peacefully from about 2 to 6 a.m. I thought it was maybe worth trying again, lying on the couch one more time to see if I could get rest. I started sorting through papers, moving old magazines and homework and envelopes into the recycling. Each time I dropped the papers into the trash, I’d plan on finally going to the couch to lie down, to rest. But each time I looked at the couch, I’d start going through the cubbies and drawers and shelves of the living room, looking for more garbage. Soon enough the place was clean, and it was just me and the couch.

  I lay down, terrified. My brain chirped hopefully that the period of arrhythmia was past. My body tensed and shuddered, waiting for the shock. I did something I’ve never done before: I sang myself lullabies. I thought the singing would keep my heart rate up, keep me from going into arrhythmia, and what came to my mind were the old songs I had sung for my daughters when they were infants. Pete Seeger does a version of “Froggy Went a Courting” with a sweet little refrain, and when all of Pete Seeger’s words were gone, I started making up my own:

  It would be great to get some rest, ding-dang-dong go the wedding bells.

  With no ICD exploding in my chest, ding-dang-dong go the wedding bells.

  After that, I tried the “Hobo’s Lullaby,” and when “Hobo’s Lullaby” was done, I lay there in delicious sleep for I don’t know how many minutes until the alarm clock in my chest blew me to smithereens.

  It was by then nearly 5 a.m. I made myself coffee. At 5:30 a.m., the newspaper delivery banged on the front door. At 6 a.m. Marcia’s alarm went off, and soon the kids were in the kitchen eating breakfast. I went down to take a shower and get dressed, trying my best around my daughters to pretend I was okay.

  Elaine Scarry writes,

  It is the intense pain that destroys a person’s self and world, a destruction experienced spatially as either the contraction of the universe down to the immediate vicinity of the body, or as the body swelling to fill the entire universe. Intense pain is also language-destroying: as the content of one’s world disintegrates so the content of one’s language disintegrates, so that which would express and project the self is robbed of its source and subject.

  Pain, for Scarry, is an erasure of the individual. Nabokov writes something similar about Pnin’s arrhythmia:

  I do not know if it has ever been noted before that one of the main characteristics of life is discreteness. Unless a film of flesh envelops us, we die. Man exists only insofar as he is separated from his surroundings. The cranium is a space-traveler’s helmet. Stay inside or you perish. Death is divestment, death is communion. It may be wonderful to mix with the landscape, but to do so is the end of the tender ego. The sensation poor Pnin experienced was something very like that divestment, that communion.

  This is life on the borderland between the kingdoms Sontag describes: the constant threat of dissolution of the self, the constant attempt to assert that the self is somehow intact still.

  Each experience of the ICD shock was obliterating, but as I showered, in the comfort of my own home, using my favorite tea-tree oil conditioner and the skin softening soap, as I flossed my teeth and brushed with baking soda toothpaste, as I looked in the bathroom mirror and saw the same face I always see, I filled that erasure with a story, the story I like to tell myself so often, that everything was fine, that everything was normal. I tried to rebuild the space suit of my ego and my space traveler’s helmet. I put on a pair of jeans, a nice T-shirt, a new sweater I had bought at J.Crew. And with a cup of coffee and a shave, I at least appeared to be my everyday self.

  The kids left for school. Marcia drove me to the hospital. I wasn’t comfortable beside her. I sat up so my back didn’t touch the seat. I shook my hands. I tapped my feet. I insisted that we stop for gas, and I got out to pump it. I was afraid of being still, afraid my heart would settle, afraid of V-tach and the shock. At the hospital, she dropped me off and went to park, and I made my way to the security desk—same place I had been before, not twenty-four hours earlier, when I had gone to visit Dr. Zhee’s office. I showed my driver’s license to the same guard who had been on duty yesterday. I told him where I had to go. I took the same elevator. I wore my long winter coat and good shoes.

  I went to the electrophysiology clinic on the fourth floor. There’s a familiar desk, and a waiting room, and an enormous TV. Usually, the seats are full of patients and their families, and because it’s a city hospital, people can get loud and pushy, and while the nurses are kind and smiling, the secretaries develop a kind of bureaucratic hard shell. But there was no one there when I arrived. The television was on. Marcia came and sat down in the plastic chairs and began to do the crossword puzzle. I paced up and down the hall, afraid to rest. It wasn’t long before Dan Zhee came, and when he saw me, he smiled.

  “You’re all right!” he said.

  “I’m fine,” I told him.

  “YOU ARE NOT!” said Marcia. And she told him how many times I’d been shocked.

  Dan rushed me to an examining room. I refused to sit on the examining table—I was afraid if I sat my heart would slow.

  He interrogated the device using his big suitcase-sized laptop and the magnifying-glass-shaped wand that rested over the lump in my chest. He could not have been more honest or more apologetic. He corrected the programming on the device, and I looked at the computer screen as if I could help.

  “Are you sure you fixed it?” I asked.

  He was sure, he said. He bumped up the schedule for my ablation. He walked me to the waiting room, apologizing all the way.

  As we said good-bye, I said, “I accept your apology.”

  He looked at me seriously. “I’m really, really sorry,” he said.

  The next time I saw Dan Zhee, he zapped the hell out of my arrhythmia, and my heartbeat has held steady ever since.

  42.

  THAT WAS WHEN I started to write this book. I joined the Adult Congenital Heart Association and flew to Orlando to the ACHA convention, where I met people with conditions similar to my own. And simultaneously, I learned that my pulmonary valve, the one implanted in 1999, had worn out and that I was in need of a replacement. It was my year of reckoning.

  Amid the wreckage of another failed novel, I still got up every morning to work. I was writing more and more about my heart, writing scraps and memories and journal entries. I became obsessed with Nicolaus Steno. As I read and reread the biographies, Steno’s life seemed to me a fable with a moral I could not fathom, something about how to face and how not to face mortality—something about the intersection of ontology and death. Steno was willing to see what no one else could see, to do what no one else would do, but despite his brilliance and unconventionality and genius, he was constantly thrown up against the limits of the comprehensible, the borders of the flesh and the mind, and these limits undid him.

  It was the spring after Donald Trump’s election that I flew south to Orlando to meet the other members of the Adult Congenital Heart Association. By that time, I already knew my heart valve had to be replaced, and I wasn’t sure when I was feeling or imagining my symptoms of weakness and exhaustion. I still looked and acted more or less healthy. Dr. Rosenbaum said I was in no immediate danger. The procedure for replacement had been scheduled. But I couldn’t tell if I was well or sick or somewhere in between.

  I was looking around for a cabstand in the Orlando airport, when I leaned on the podium marked “Information” and somehow lost my balance. I thought something had shifted inside me again, an arrhythmia, an embolism. But then I realized that the podium was on wheels. It had slid out from underneath me.

  Everyone was wearing a sweatshirt in the frosty air conditioning. Outside it was so hot and humid that I could hardly stand. The shuttle to the conference hotel drove past glittering buildings, highway dividers, and swamps, a landscape that brought to mind Norman Mailer’s 1968 description of Miami Beach: “Over hundreds, then thousands of acre
s, white sidewalks and white buildings covered the earth where the jungle had been. Is it so dissimilar from covering your poor pubic hair with adhesive tape for fifty years?” Fifty more years had passed, more adhesive tape had been applied, and all Florida went on pretending that it was perfectly comfortable. President Trump had pulled out of the Paris Climate Accords. My body, the scenery, the nation to which I belonged, all of us were powered by scientific technology, and all of us pretended busily that the scientific facts were unreal.

  Then I was in the big anonymous hotel ballroom, facing it, several hundred patients with identification tags hanging around their necks. I was approached by a short, friendly man in an NPR T-shirt.

  “Chris Halverson,” he said, reaching out his hand. “Six open-heart surgeries. Pulmonary atresia with VSD.”

  “Gabe Brownstein,” I replied. “Tetralogy of Fallot. Two open-heart surgeries, an ICD, a valve replacement scheduled for the summer.”

  We formed into little groups, everyone naming their defect and surgeries. We transitioned easily into recitations and comparisons: about our doctors and our symptoms and our fears and our devices. People laughed, describing times they’d collapsed in movie theaters or been rushed into operating rooms with their aortas rupturing.

  Danny Spandau and I spent hours together, in the bar, over meals, at the pool. People began to ask if we were brothers, two Jewish guys, ten years apart, both living with repaired tetralogy of Fallot. He introduced me to Meg Balke and Melissa Hartman, two Florida ACHA members who had helped him and supported him emotionally while he went through his valve replacement surgery. In the bar I met Belen Altuve Blanton, who showed me her blue fingers and made jokes about her cyanosis.

  I met people whose lives have been profoundly affected by their heart defects. There was a young woman from Grand Rapids, Michigan, a beauty with tiny, childish features and hypnotic gray eyes. But the quality of her gaze betrayed her disability. She had been born at home, without a doctor’s care, and her septal defect had led to an embolism, which led to a stroke that damaged her brain. She could not read or write or drive. She was such a small-town girl—she spoke of the two heart hospitals in Grand Rapids as if I would be familiar with both. She was rooming in the hotel with a woman about her age, and her roommate had been born with Shone’s disease, a defect of the aorta. At the conference they were a pair of giggling young beauties who seemed to have known each other all their lives. Both had spent their summers at camps for children with heart disease. They both said it was wonderful for kids with scars on their chests to be around other kids with scars on their chests, especially when they were swimming, to have their conditions normalized.

  One day over lunch I met a woman named Amanda who was born with a rare genetic disorder, chromosome 18p deletion, which occurs in only 1 in 6,000 live births, and of those babies, only 9 percent suffer from a heart defect. Amanda was short, her big glasses perched on her little nose. She had problems with her eyes, with her hearing. She had scoliosis and a repaired harelip. She had been through so, so much: four heart surgeries in a single year, recently, and then a bloodstream infection that required cutting out part of her lung and kept her hospitalized for weeks.

  “Oh, man, that was terrible,” said Amanda, shaking her head, and shaking off her cruddy luck. Her style was casual, her attitude adorable, and her husband followed her like a faithful hound.

  Amanda’s cardiologist, Karen Stout, hugged her in the bar. “I love her,” they said to me, almost simultaneously. I saw Marlon Rosenbaum get a little tipsy, and met Dr. Doug Moodie, a big man with a big voice, a senior cardiologist from Texas, who talked to me for a long time about Denton Cooley, whom he’d known well.

  I met bereaved parents. There was a couple whose son didn’t know he had a heart defect until he collapsed running his third marathon—he’d survived, but it had left them all shaken. There was a woman who, when I told her my surgeon was Jim Malm, gasped, and tears filled her eyes.

  “I usually say I have just one daughter with a heart defect,” she said, but the truth was she had had two. One was alive, the other was gone, and the child she had lost had been operated on by Jim Malm. Her daughter had survived the surgery—she had lived to her early twenties—but one weekend in the Hamptons, she overdid it: too much sun, too much drink, too many drugs, and she collapsed. I couldn’t ask what part her daughter’s heart defect played in her death. I could only say how sorry I was.

  I took a nap every afternoon, and I wondered, as I always do, how much my naps were due to my decreasing heart function and how much they were due to the demands of travel and conventioneering. In the mornings I did laps in the swimming pool, and tired quickly, and got anxious about my heart rate and my ICD, and I was glad I didn’t get shocked in the water.

  A panel led by Dr. Curt Daniels of Ohio State University discussed the certification of adult congenital heart centers, a process Daniels was overseeing whereby hospitals could demonstrate their capacity to appropriately treat adults with congenital heart defects—that the hospital had the necessary staff, equipment, and expertise. The certification would allow patients to know where to go to get the proper care.

  One of the doctors’ big concerns was collection of data over time and lack of information about patients. The United States had once been the world’s leader in the development of heart surgery and cardiological care but was now falling behind. In Canada, in Germany, and in the United Kingdom, national health-care systems allowed for organized data collection, whereas in the United States data collection was ad hoc, center by center. Huge numbers of adult congenital heart patients in the United States—about 90 percent of us, according to the ACHA—were lost to care. Without knowing the course of their patients’ lives, doctors could not figure out how to treat them.

  Mark Roeder, the president and CEO of the Adult Congenital Heart Association, welcomed us all. Before coming to ACHA, he had worked for the National Multiple Sclerosis Society and the Susan G. Komen Breast Cancer Foundation. His mission, as he saw it, was to make the condition—adult congenital heart defects—known to the world and to spur research and data collection.

  “We are the number one birth defect,” he told the assembly. His goal was to achieve a national profile, to establish a brand. There were now approximately 2.5 million of us in the country. More and more of us were surviving heart surgery and living to middle and old age. We were a new kind of people, and we wanted to be recognized and taken care of. The phrase “adult congenital heart disease” should not be so obscure. Patients should be able to say it, Mark Roeder said, and be understood. Later, privately, he explained how dire the situation was—how poorly the United States tracked its congenital heart disease patients, how the statistics were all estimates, good data and ratios from Canada projected onto the vast US population, where data collection wasn’t as systematic. And it was so hard to publicize: “‘Congenital’ is such a misunderstood word,” Roeder said.

  At the end of the weekend, there was a big dance. Danny Spandau had a white jacket and confident, restrained moves. Big Doug Moodie wore a double-breasted suit and, though he was in his mid-seventies, got down to J. Cole. I was sitting with Jenny—the woman who had had recent heart transplant surgery, whose defibrillator had once shocked her ninety-eight times in a single half hour. She looked at Dr. Moodie and mentioned that when she was an infant, her father had taken her to Texas, and there Dr. Moodie had said it might be right to give up hope, that it was unlikely Jenny would survive that much longer. She told this story without a trace of bitterness. The music changed. It was “Uptown Funk” by Bruno Mars. She wanted to get on the dance floor. I went with her. Jenny was wearing a hippie skirt, and she threw her blonde hair around like a freak flag.

  Oh, yeah, she told me, she’d always been a good dancer.

  43.

  ON THE PLANE back from Orlando, I watched Logan, the Hugh Jackman X-Men movie—a contemporary retelling of the Frankenstein story, with fewer epistolary digressions and more violen
t chase scenes than in Mary Shelley’s nineteenth-century novel. I loved it. The Frankenstein doctor is Zander Rice, played by the British actor Richard E. Grant. He works for a company called Transgen, which is breeding superpowered mutant children in test tubes and raising them to be deadly weapons. The children are chased by tanks, and there are flashbacks to the prison-like hospital in which they were raised. A thuggish henchman with a cyborg arm uses a file folder to blow out candles on a birthday cake. Toward the end of the movie, I got so excited, my left elbow kept spazzing out and hitting the armrest of the seat of the guy sitting next to me—a big guy whom I’d seen screaming into his cellphone when we were getting ready to board the plane. But he was very understanding.

  “That’s a good movie,” he said.

  For me, the appeal was visceral. Coming back from the conference, I could see how the movie played into my fantasies. The children in the hospital weren’t sick. They were superpowered mutants. The doctors were evil and scary, sticking the kids with needles and keeping track of them on charts. The big and faceless hospital was a jail. And then the hero daddy appeared in the person of handsome and dissolute Hugh Jackman, and he broke the kids out of the hospital, and freed them from their captors, and took them to a paradise mountain refuge where they could live without doctors and just be themselves. It was like the filmmakers had heard Doron Weber’s urgent ICU prayer—“D-man, let’s bust out of this joint and go home!”—and they had spun from it an action adventure cartoon.

  The plane landed. Back in New York, President Trump was on the radio, on TV, in the newspapers, inveighing against Obamacare. He promised a new kind of health-care system that would be “great” and “tremendous.” Briefly, he admitted his willful incomprehension—“Who knew health care could be so complicated?”—and the national conversation revealed the extent of our American terror and denial. It’s not just me. We all live in the borderland between health and sickness, and we all don’t want to talk about it. We all depend on our doctors, but we all want to pretend we’re fine and free.