“I felt the pressure in my groin,” Chris wrote in a semiautobiographical short story that he kindly shared with me. “It was a strange, outward, inward, upward sensation, and then I felt the heat rumble around my chest, the heat right there in the pumping lifeblood, a mellow heat, increasing as the object stayed there, radiating unnaturally.”
The doctors discovered something there in the catheter lab, and when Chris awoke, it was from deep anesthesia. He was surprised to find that his chest had been split again. “I tried to move my hands,” Chris wrote in his story. “My limbs were of lead, and the back of my head felt heavier still. My whole body had a pulled back feeling, like some invisible force more powerful than gravity had exerted its own special pull on me.” He was attached to a breathing tube. He was in the cardiac ICU again, on his back, his body chopped to pieces.
In San Antonio, when the family finally got there, Chris was a broken, frightened boy. “I made the conscious decision not to make friends, and I tried to hole up with books for a year.” Some Sundays, his mother drove him to the local Presbyterian church. Other Sundays, Chris got a ride from a fellow parishioner. On account of the fragility of his chest, Chris wasn’t allowed to lift more than thirty pounds. He could not participate in the ordinary life of a Texas middle school student.
When the family returned to Cheyenne, Chris was more isolated still. His minister, Chris’s best friend’s father, had been kicked out of his Nazarene church because, as the church put it, he could not control his wife. This was Chris’s best friend’s mother—she was mentally ill, Chris knows in retrospect. Her illness dynamited her family and also Chris’s world. He was separated from his best friend, his minister, and his church.
Every trip to Mayo now felt like a game of Russian roulette. The scars inside his chest were growing, he knew, constricting openings, narrowing the flow of blood to his lungs. He had to sit in waiting rooms full of small children and their mothers. The other patients were reading Highlights for Children. Chris carried The Brothers Karamazov. In echocardiology, strange women inspected his body. They were sweet to him. In the dark, quiet rooms, the technician rolled the transducer wand across his scars, and Chris felt shy and ashamed of his body and of his own desires.
All the disconnections in his life were growing, between his mind and his body, between himself and his friends, between himself and his family. He knew what he wanted in Christianity: close attention to the Bible and purposeful engagement with the world. One day in tenth grade, he came to Christ Lutheran Church, a box of a building on a highway toward the southern edges of Cheyenne. He saw a thin young woman with long dark hair in the pulpit.
“She was kicking ass and taking names, preaching the love and the mercy of Christ,” said Chris. “Everything about her exuded grace.”
This was Pastor Sarah Moening. Chris was moved by her sermon on racial justice but also by her closeness to the Bible. All the other churches in Cheyenne had asked him to reject his parents. Pastor Sarah did not. Chris was enraptured by the Lutheran theology of the cross.
“God is in the last place you look,” Chris told me. “What saved my life? Not butterflies and unicorns, but a piece of Gortex, a piece of cadaver. God is with you in the pain, with you in the suffering. When God shows up, he shows up not in a castle, but in a manger.”
Chris was feeling okay in the last year of high school, as the family drove to his annual visit to Minnesota. The pediatric cardiology ward was familiar to him, and he gave directions to the parents of the other patients, this way to the X-rays, that way to the echocardiograms. He carried a copy of Black Nationalism: The Search for Identity. “I couldn’t stop listening to the pounding in my chest,” he wrote in the story he showed me. “I was waiting to hear a missed beat. I was waiting not to hear it at all. I was waiting to die.” There was another crisis.
Chris was rolled into the operating room. His mother held onto his hand; his father held hands with his mother. The anesthesiologist put the mask to Chris’s lips, a taste Chris described as tangerines and iodine. Then he was waking up, or not quite waking up, from surgery. His vision was blurred. His body was unfreezing. The breathing tube was pulled from his mouth—I know what that feels like: it goes intolerably far down one’s throat, and it comes out with a dry saliva like epoxy. Chris wrote,
Cocooned in the white bed I knew I was safe. I gathered that the heaviness and lightness were both unreal. I felt the pain, perhaps paradoxically, more strongly because of its morphine mask. It felt like the breathing tube—something lodged in my chest. The morphine mask felt like I should be able to cough it up, or puke it up, but my body couldn’t react in this way. The pain I knew was real. My body knew it was real. But the unreal contraptions around me made that reality disappear. The man was the shadow and the shadow was the man.
All he was allowed to eat on the long ride home was McDonald’s salad without dressing. His parents bickered and fought with hotel clerks. His mother hovered over Chris. His father became disengaged. In the car, they listened to NPR and to the rock band Rush. Every half hour they had to stop so Chris could walk and cough to make sure he didn’t develop blood clots. He took a shower in a hotel bathroom and, under the unforgiving lights, looked at his chest in the mirror. There were the incisions healing where the chest tubes had been. Chris felt like he could stick his fingers in the holes. He felt he could see his insides. When he got home to Cheyenne, he knew what he had to do with his life. He went to college in Oregon and finished in three years. Before he was old enough to drink, he was a Lutheran seminarian.
When I saw Chris in his church in January 2018, giving his sermon on sexual harassment and the #MeToo movement, I felt anxious for him, and I felt anxiety throughout the room—not disapprobation of their pastor but a sense that he was skating near subjects on which he and his congregants might disagree. I looked at a solitary old white man across the aisle from me. He was the only fellow there in a suit and tie, a thin man, his hair neatly parted. I imagined he was a widower and had been attending this church since its founding. In my mind, he had married and mourned his wife here. This was where all his children had been baptized. What would he make of this long-haired, bearded kid in the pulpit, talking sympathetically about a feminist movement that had started with a hashtag on the internet?
I was a fool to think protectively of Chris Halverson, here in his church. He had made—even as he stood there, he was making—his vulnerabilities into his strengths. His sermon was based so clearly on the liturgy, so powerfully on his own experience, so forcefully within his own synod, and had such moral clarity that the very discomfort around the subject seemed to draw his flock closer to him and closer to each other.
“Peace be with you,” we all said to each other after the sermon was done. Every member of the church shook hands with every other, and some embraced, and some were too ill to shake hands or embrace but nonetheless were touched by their fellow congregants. Even I, a stranger there, an unbelieving Jew, was moved and welcomed and comforted.
When it was all over, Chris stood at the door shaking hands. The woman who was serving coffee and cookies behind the counter stopped him. “You know,” she said, “I was sexually assaulted when I was young.” She and Chris conferred privately, along with her son. Later Chris told me that her boy had had corrective heart surgery as a kid and was facing another operation soon. Chris was shepherding them through it.
I guess there are several ways to deal with something like a congenital heart condition. One way is through understanding the science, by facing one’s condition objectively. This is something that in my teens and twenties I had trained and conditioned myself never to do—never to face the hard facts of my own heart defect and never to think of myself as sick or in danger. Another way is through religious consolation, through trust in a higher power. I don’t have the gift for this, not the way Chris Halverson or Bridgette Ratliff do. I pray, but my prayers are spasmodic, there and gone, and of little continuing consolation. A third way is through c
ommunity, through emotional connection with other people, which is maybe something I am trying to do now, even as I write this book, but in my late twenties, I was incapable of that kind of connection.
In my childhood, denial and independence had been a powerful adaptation to my condition. I think my parents were right in raising me not to think of myself as crippled. Mike Freed once talked to me about patients who were brought up to dwell on their heart conditions and to carry themselves as invalids. “They never grow up,” he said. But in refusing to acknowledge my condition, I had constructed a little prison for myself.
There I was in my late twenties, adjunct to my life, shackled to my ambition, and in profound denial about my state of health. I had no capacity for intimacy. I kept my fear secret. I didn’t like to talk to my friends about my heart. With my family, the subject was taboo. The result was a stunted, shuttered emotional life. Romance was fleeting. There were flirtations and one-night stands. A beautiful, kind, intelligent woman lay in my bed after sex, and she told me she loved me, and I said, “I’m not ready to build my life around a relationship.” I lived alone; I wrote alone; I worked alone. I was solitary. But back home from Boston that fall when I was teaching at Barnard, after I left Dr. Rosenbaum’s practice, I was exhausted. The cracks in my shell were giving way. I quote William James, one more time:
There are only two ways in which is it is possible to get rid of anger, worry, fear, despair or other undesirable affections. One is that an opposite affection should overpoweringly break over us, and the other is by getting so exhausted with the struggle that we have to stop—so we drop down, give up, and don’t care any longer.
Maybe a couple weeks after I got that letter from Dr. Freed, I bumped into Marcia Lerner, a woman I’d known for years and in front of whom I’d always been intimidated. She was so beautiful. She was so funny. She’d always been a little bit haughty around me, something that turned me on and made me play the ass, blurting out the weirdest things, always boasting and pretentious. (I’d attended Columbia’s MFA program, I told her once [oh, do I really have to write this?], because of “the high publication rate among its graduates.” [GAHHHH!!!!]) That fall, somehow, when I saw her, I was free of bullshit. I was relaxed. I asked if she’d have a cup of coffee with me.
We sat together in a café. We talked, and I liked her even more. We walked together through the West Village. Down by the Hudson, we watched trash bob in the river. I turned to look at her face in profile. I just wanted to be with her.
The first time we were alone together in her bedroom, I did something I had never done. I warned her before I took off my shirt. Every time, with every other girl, I’d just pretended it wasn’t there. But I said, “I have something to show you.” I was really nervous that she would be frightened by my scar, but Marcia didn’t seem at all frightened or even bothered so much as interested. She asked me about the operation I’d had as a kid. And I explained to her, as I really hadn’t to anyone before, all about my heart.
23.
IN THE LATE 1930s, while Helen Taussig was working in Baltimore and beginning to measure the effects of patent ductus arteriosus on children with tetralogy of Fallot, the first-ever pediatric cardiopulmonary surgery was performed several states up the East Coast by Dr. Robert Gross at Boston Children’s Hospital on a little girl named Lorraine Sweeney, who had been born with a defect not to her heart but to the great arteries above it: she had a ductus arteriosus that would not close and that—if it stayed open—would kill her.
Lorraine was the eighth and youngest child of Irish immigrants. The Sweeney family lived in a crowded apartment in South Boston. Lorraine’s father played accordion, her mother Mary Ellen sang, and “music came on with the kettle in the morning,” Lorraine remembered. Some Gaelic was still spoken in the home. Lorraine had seemed to be a healthy baby when she was born. There was no cyanosis in her first weeks of life—no blue fingers or lips—and no edema, no swelling of any part of the body. But as she got older, she got weaker. Her breath grew noisy and labored. She easily grew fatigued. She was diagnosed with a PDA. Though she was otherwise healthy, in 1931 nothing could be done for her. Lorraine sat at the window as a child, doomed to die slowly, watching other kids play in the street.
Her father drove a streetcar for the Boston Elevator Company. His route ran between Brighton and Cambridge. One day, when he and his wife were crossing the street in front of their church, St. Columbkille’s, an automobile struck him down and killed him. Lorraine’s mother—now a widow with eight children, the youngest dying of heart disease—was devastated. In despair, Mary Ellen Sweeney took seven-year-old Lorraine again to see the doctor—was there really nothing to be done?—and she was referred to Dr. Gross at Boston Children’s.
When Gross met Lorraine Sweeney in the summer of 1938, he examined her carefully. The girl told her doctor that she knew she had “something wrong in the chest.” Her mother said she could hear “a buzzing noise” whenever she was close to her child. Gross’s notes run as follows, directions on how to diagnose PDA with nothing but a stethoscope and a blood pressure gauge:
At the time of admission, the patient was slender and undernourished. The pulsations of the carotid arteries were abnormally forceful.… The veins over the chest were somewhat prominent. There was a precordial bulge. The heart was definitely enlarged by percussion, the enlargement being for the most part to the left. Over the entire precordium there was a prominent coarse thrill which was most intense in the third interspace to the left of the sternum. This thrill was continuous but was accentuated during systole. There was a rough “machinery” murmur heard with maximal intensity of the pulmonic area to the left of the sternum in the second and particularly in the third interspace. It was continuous through the cardiac cycle but like the thrill was greatly accentuated during systole.
Robert Gross was a short, broad-chested, narrow-eyed young doctor, well-dressed, formal in bearing, and somewhat reserved. Childhood cataracts had left him blind in one eye, a fact he hid from his patients and colleagues. As a boy, he was mechanically inclined, and his father encouraged young Robert to take apart and put together clocks and watches—perhaps to help the one-eyed boy improve his depth perception. Gross could disassemble and reassemble a car engine. He could mend his own clothes. In his operating room, he had a special toolkit, painted gold by his nurses. He took an interest in the machinery of the operating room, later inventing pumps and gauges, and he was an innovative, creative surgeon, if not an especially deft one. He knew that Lorraine Sweeney was suffering a PDA, and he knew he wanted to operate.
PDA surgery had been attempted before Gross, but not successfully. The year before, at Massachusetts General Hospital, Dr. John William Strieder had performed an emergency patent ductus arteriosus ligation on a twenty-two-year-old woman who then died of a blood stream infection after surgery. Gross himself had been running experiments, working on PDAs in dogs. He created artificial PDAs in his laboratory dogs, and then he shut them. He saw an opportunity—to be the first ever to close a PDA, to perform the first-ever surgery on a cardiac defect, and to save a little girl.
He went to his supervisor, Dr. Charles Ladd, for permission. Ladd turned Gross down: it was too risky and too early in Gross’s experiments to try to operate on a human being. Then Ladd went off on vacation.
Ladd was a Boston Brahmin, the child of generations of Harvard men, and the preeminent pediatrician in the world. Gross’s father had built pianos in Baltimore.
While Ladd was away in Europe, Gross went back to Mary Ellen Sweeney, the widowed immigrant with the dying daughter. He wanted to operate on her daughter. He explained that it was an experimental procedure but that he might be able save Lorraine’s life. Mrs. Sweeney went to her church, St. Columbkille’s, the same church in front of which her husband had been run down. She sought council from the priest. “Well, Mrs. Sweeney,” said Monseigneur Tracey, “if God wants her, he’ll take her either way. You let her have the operation and God be good to her.”
In 1938, there was no pretty patients’ waiting room at Boston Children’s, nothing like the warm pediatric cardiology lounge where I waited in 1995. There were just cold, wooden benches. Parents were not allowed to accompany their children into the hospital. Lorraine’s mother was so racked with grief and terrified that she could not take her daughter to the hospital. Mary Ellen Sweeney was sure she’d never see her child again. The family lied to seven-year-old Lorraine and told her she was going to the hospital to visit her niece. Lorraine’s big sister took her in a streetcar and walked her to Longwood Avenue. Lorraine went up the steps and into the hospital alone. The doors closed, and she was abandoned.
On the morning of surgery, she sat by herself on the big wooden benches in the surgical waiting area, listening for her number to be called. She was number ninety-nine.
Gross was the first to perform pediatric cardiac surgery, but he had important predecessors, most significantly, Alexis Carrel, the father of vascular surgery and among the first to hypothesize a heart-lung machine. While Maude Abbott, devoted to congenital heart disease, was toiling in obscurity at McGill, even as she was riding a taxi uptown from Penn Station to put up the display of her late-career work in the halls of the New York Academy of Medicine, Carrel was blocks away at Rockefeller University. He was a celebrated genius but also a mystic, and a madman, and a reactionary who called for the slaughter of those he deemed genetically undesirable.
In 1902, when Carrel was twenty-nine years old, he was banned from French medicine because he claimed to have witnessed a miracle at Lourdes. Carrel swore that holy water, splashed over a young girl’s stomach, had cured her of tuberculosis. French anticlerical laws forbade physicians from endorsing miracle cures, and so to continue practicing medicine Carrel had to emigrate to the United States.
The Open Heart Club Page 17
