Everything Else Fell Away
by Sally Ann Fleckler | Photos by Don Hamerman
Through most of the 1990s, Sungrai Sohn was cold. Not a winter chill to be dispatched by a toasty fire. Not the artificial nip of an office building, remedied with a jacket. This was different—a coldness so deep and lasting that getting warm becomes both obsession and luxury. At home, he wore four to five layers of clothing and still shivered. Once, on a blazing hot summer day, he had to be taken by ambulance to the hospital. Inside the vehicle, the paramedics blasted the heat to try to make him comfortable while his wife sweltered.
Ironically, this man with the arctic interior is the incarnation of warmth. He is an acclaimed violinist, beloved by family, students, fellow musicians, probably even by the guy who has a chance encounter with him at the hardware store. He’s that kind of person.
The persistent cold was an intimation—not the only one—that Sungrai Sohn’s liver was dying. For more than 40 years, it was a workhorse, filtering blood, detoxifying chemicals, metabolizing drugs, making proteins. All the while, it fought off a continual but furtive onslaught from the hepatitis B virus with nary a peep other than unexplained illnesses here and there.
It bore the battle scars, though. If a healthy liver is a smooth, meaty, luscious organ, a diseased liver looks evil. It’s all witch nose with awful scarring that looks like warts growing on top of dreadful, mean warts. When you see pictures, your reflex is to avert your eyes.
By the time the calendar flipped to 2000, Sohn was gravely ill. He could only eat food that was smooth. He suffered memory loss, cramps, an enlarged spleen, bleeding. His blood was not able to pass through the liver easily, so the pressure in his blood vessels and on other organs was indescribable. (About this, Sohn will only say that it was not a very pleasant time.) Sleep eluded him for days on end. He was in a fog. His only hope was a liver transplant, but he was so far down on the list, and so few cadaver livers were available, no one thought it would happen in time.
And that’s where things stood until one morning 11 years ago when his sister-in-law opened The New York Times. The story she read set in motion an act of unfathomable generosity—and gave Sungrai Sohn back his life.
More Gnarled by the Day
When Sohn was only a few months old, the Korean War uprooted his family. Their house in Seoul was burned down and they fled south to Pusan, where it was safer. There his parents, two brothers, sister, and little Sungrai stayed for three years until they could return to Seoul.
But the damage had already been done. On the train to Pusan, the family ran out of milk for the infant, and his father had to find several wet nurses for him. That’s his doctor’s best guess for when the hepatitis B virus got its foothold. Throughout childhood, Sohn was often sick. Fortunately, his parents were well-to-do and able to provide him with good care. No one thought much of it.
If he was physically fragile, his dreams were not. When he was 4 years old, he decided not just that he wanted to learn to play violin, but that it would be what he did with his life. His mother, herself an accomplished pianist, was supportive. His father, who was in the import/export business, returned from a business trip to Japan with Sungrai’s first violin—and a whole trunkload of music. (He was an importer—he couldn’t buy just one of anything, says Sohn.) And so the little boy began to practice. By the time he was 6, he was performing on Korean television.
Sohn made his mind up then and there. He was going to learn to ride a motorcycle—another lifelong dream. And it was time to buy a Bugeye.
Today Sohn is an extraordinary musician, the founder and heart of the Amasi Piano Trio as well as the Laurentian String Quartet, which was for a long time quartet-in-residence at Sarah Lawrence. It’s hard to say which is more remarkable—Sohn’s playing or his teaching. His students call him a gentleman, sing his praises for the way he’s deepened their mastery of the violin or viola by showing, rather than imposing, his approach to the instrument.
Sporadic illness had followed him into adulthood. Still, it was nothing specific or worrisome. Until one day when he visited his allergist, who realized that Sohn had dropped a good 20 pounds in a very short period of time. Sohn was in his mid-40s by then. Just to be on the safe side, the allergist said, go see your internist.
Thus began the journey. Sohn’s internist sent him to an oncologist, who suspected he had the rare hairy-cell leukemia. But she wasn’t sure, so she sent him to see her mentor at Dana-Farber in Boston. With cancer on the table, Sohn’s singular focus was on getting his affairs in order. His violin stayed in its case. There was no music in his heart. Besides, he was too busy changing the house over to his wife’s name and making sure that she, their son Peter, and Rachel, Susannah, and Jennifer, his stepdaughters from Patricia’s first marriage, were provided for.
But then—surprise—the guy at Dana-Farber did more blood tests, decided it wasn’t cancer, and sent him to the gastrointestinal chief at Boston’s Brigham and Women’s Hospital. There, finally, he got the diagnosis. He had chronic hepatitis B.
It sounded like good news at the time. The doctors said there was medicine that might work. And it did for a while—until the sly virus mutated, making those drugs ineffective. Sohn enrolled in clinical trials for experimental drugs, but they didn’t help.
So there he was, his tired liver turning more gnarled by the day, and him well knowing how many people die because there aren’t enough cadaver livers to go around. What could he do?
What he could have done was curse his fate. What he could have done was lie down and prepare to die. He could have begun a search for a miracle cure, gone on an endless round of third, fourth, fifth opinions, made plans to travel to some exotic locale he’d always wanted to visit.
What he did do was, in many ways, more remarkable. He didn’t give up hope—and he didn’t dwell on his illness. Instead, he got up every day and went to work. That was his habit. If he said he would do something, he did it. He taught his classes at Sarah Lawrence and met with his private students. He practiced for concerts with the quartet and the trio. He even fulfilled his commitment for a three-week concert tour of Korea.
Somehow, when he took to the stage and brought his violin to his chin, everything else fell away—the exhaustion, the pressure, the fog. He floated on the energy of the music. When it was over, he would collapse on the couch backstage. Years before, his undergraduate teacher at the Peabody Institute in Baltimore told him that unless you’re dead, you show up for your concert obligations. And Sohn wasn’t dead—yet.
But he was awfully close.
An Incredible Sense of Destiny
David Esposito is a soft-spoken, earnest man. He’s a videographer, artist, and one of the eight brothers and sisters in Patricia Sohn’s close and voluble Italian family. He remembers when Patricia first started bringing Sungrai home. Two things impressed him: for a small man, Sohn had a prodigious appetite, and he also had the capacity to sit for hours and listen while their father told and retold his stories. “There wasn’t a bad bone in his body,” Esposito says. “He was a friendly, funny guy, calm and able to live in the present—somebody I wanted to be more like.”
Esposito was standing in another brother’s kitchen one night when the phone rang. The news was unexpected—and devastating. Sohn needed a liver transplant or he would die. Esposito just sat there, feeling helpless, wanting to be able to do something for his brother-in-law, wanting to lift this burden from the older sister he had always looked up to. But there was nothing to be done but wait.
“I was unshackled from not being able to do anything for Sungrai to being able to do everything for him.”
Esposito talked to Sohn on the phone frequently. But each time he saw him in person, the desperation of the situation hit hard. “He looked like an old man,” Esposito says. “He was yellow and fragile. He couldn’t talk without you feeling his pain. I don’t know how he kept his sanity or his willingness to go on.”
Then, in June 2001, Esposito’s wife Ann Marie happened upon an article in The New York Times about living-donor liver transplants. Now it’s more of a mainstream option, but at the time the operation had only been performed for four or five years, and they were still working out the kinks. As soon as Esposito heard about it, he decided this was something he wanted to do for Sohn. “It was explosive,” Esposito says, as he struggles to explain the magnitude of the opportunity. “I was unshackled from not being able to do anything for Sungrai to being able to do everything for him. If my wife had read about it a month later, it might have been too late.”
Living-donor transplant was not a topic the doctors had ever broached with Sungrai and Patricia. They were so squarely focused on a cadaveric liver as Sohn’s only chance that it took awhile for Esposito’s proposal to sink in. “I was already very sick,” says Sohn. “My mind was not processing it. But gradually I understood. I thought, ‘Maybe I can live.’”
The liver has two lobes, and in living-donor transplants, they transfer the larger lobe. What is truly mind-boggling is that within several months, the liver in both donor and recipient will regenerate until it is almost back to full size.
Esposito was put through a battery of tests after being interviewed extensively to ensure he was not being coerced to donate. But really, the only physiological issue in a liver donation is the compatibility of blood types—and Esposito was a universal donor. It’s not a risk-free—and certainly not a pain-free—endeavor. “There was a one in 1,200 chance of me dying,” says Esposito. “All I could think was I will never have this opportunity again. It was a chance to do something heroic in my life.”
The surgery was scheduled for shortly before Christmas, 2001. Esposito remembers traveling into New York City with Patricia and Sungrai for a family Thanksgiving. “Sungrai was sleeping in the car,” he says. “He was freezing—was nothing but skin and bones. He could have died at any moment. I worried it wouldn’t happen in time.”
On the day of the surgery, Esposito was lying on his side on the gurney, ready to be taken into the operating room. “I had this incredible sense of destiny,” he says.
The only complication in the surgery was that Esposito had three bile ducts instead of two. “They had to manipulate some things,” says Sohn. “They cut out part of my big intestine to make it work. They said my inside is like a subway station, it’s so complicated.”
Sohn awoke from the surgery instantly better. The fog that had encompassed his mind for so long was gone. He didn’t have to struggle to think clearly. And for the first time in 12 years, he says, he was warm.
Sohn’s idea of a perfect summer day is gardening and working on his car. On the June day when I visit, there’s not much to do in the picture-perfect vegetable garden, where lettuce, tomatoes, kale, basil, and peppers grow in the orderly rows of early season. Over in his tool shed, he shows me the truck jack he bought yesterday when he and Patricia, celebrating their 32nd anniversary, took a day drive to the Lambertville antique flea market in New Jersey.
Early this morning, he stripped the jack, painted it black, and oiled it. Now it’s almost too pretty to imagine using it to lift up a car. But that’s what he’s chomping at the bit to do. The gas gauge isn’t working on the yellow, vintage Austin-Healey convertible he bought last summer. This is the car he’d wanted since he first saw one in California in the early 1970s. Back then, he barely had enough money to buy himself a 19-cent taco from the lunch trucks. But he promised himself—some day. He put off the purchase until a few years ago, when during one of his routine checkups, he shared a hospital room with another transplant patient who told him a haunting story. The man had finally bought the truck of his dreams. As he drove it into his garage for the first time, his cell phone rang. It was his doctor, calling to tell him his transplanted liver was in rejection. There was nothing more they could do for him. He was going to die.
Sohn made his mind up then and there. He was going to learn to ride a motorcycle—another lifelong dream. And it was time to buy a Bugeye.
He spent last summer taking it apart and putting it back together. It’s a relatively simple car. There’s no door handle, for instance. You get in by pushing open the heavy plastic window and opening it from the inside. The convertible roof isn’t mechanical. You take it off, fold it up, and put it in the trunk. It only takes a $15 part to replace the gas gauge. But to put it in, he has to get underneath the car and take the whole gas tank out—a significant undertaking.
The conversation about car mechanics seems incongruous, coming from this accomplished musician. But that’s perhaps one of the keys to what makes him so special. If he’s going to do something, he’s going to do it thoroughly and well. It’s not a “live like there’s no tomorrow” philosophy. It’s more “live like you might not be here tomorrow”— a fine distinction that puts the emphasis on doing his best in whatever present moment he’s in. It’s a lesson many of us would do well to learn.
If We’re Really Lucky
Post-transplant, Sohn follows doctors’ orders to a “T”—maybe even to a “Z.” He was never a big drinker, but he hasn’t had even a single glass of wine since the transplant. Any raw foods—salad greens or fruit, for instance—have to be triple washed, so eating out at a restaurant is not something he does casually. When an endocrinologist placed him on an 1,800-calorie diet to keep diabetes at bay, Sohn followed it religiously, despite being hungry all the time. One night he ran into the parents of one of his violin students, who were both doctors. They were appalled to see how thin Sohn had become. When he explained the situation, they laughed. “Mr. Sohn,” they said. “Don’t you know you never listen to your doctors? Most patients don’t do 30 percent of what doctors say. You’re doing 100 percent.” But transplant patients have to listen to every admonition or they get into trouble, Sohn says. “I listen too closely, I guess.”
Nonetheless, Sohn still succumbs, quickly and dramatically, to mysterious fevers that lay him low for days at a time. “I get sick very fast,” Sohn says. “I’m talking to you now. Three hours later I might be unconscious—out. I cannot even talk.
“Thank God for my wife; otherwise I don’t know where I’d be. It’s nervewracking for her. She has to make a million phone calls. Keep a check on my fever, what I’m eating, what I’m drinking. She becomes full-time nurse.”
The episodes are scary, he says. But he’s remarkably equanimous about them. “I actually don’t worry about it. I don’t think about it until it happens,” he says. “I think my wife worries about it more than me because she has to take care of me. I just do the things I need to do. Don’t eat this, don’t eat that, and don’t touch this, and get away from sick people. I do the best I can, but I don’t worry about getting sick.”
These episodes have been occurring more and more often, the result of problems with the bile ducts. Surgery is not an option, and despite all he’s been through, Sohn needs a whole new liver—this time from a cadaver. Because he’s fairly far down the donation list, his best hope is that a “directed donor” with type O blood will bequeath an organ to him.
Once again, Sohn must endure the uncertainty of the wait, and hope that an organ comes through in time. But he is still incredibly grateful for the decade of relative health that his brother-in-law’s gift gave him. Says Sohn, “After you go through all this, you actually do live differently. Before I try to do best as I can, but now it’s 110 percent, have to give everything because you might not be here next day. Or the next three hours.”
The day before, at one of the antique stores, Sohn had struck up a conversation with the furniture repairperson: “We started talking about music, and then life. And he says, ‘The rock out there is a hundred-million-year-old rock. And we live 90 years, if we’re really lucky.’ Our life is so short. It goes by so fast.”
As had my visit. Before I left, Sohn played for me. I sat on the couch in the cozy music room. Patricia was at the grand piano. Sungrai picked up his bow, tucked his violin under his chin. At the instant that bow touched string, his face changed, his look of gentle intelligence replaced by a fierceness and focus I never expected. His Ave Maria was haunting, full, and knowing.
A few days later, David Esposito recounted to me his story of being at a large family gathering, listening to Sohn play. This was some time after the transplant. Intellectually, Esposito says, he knows that part of him is inside Sohn. But on that particular occasion, even though he was all the way across the room, he truly felt like they were connected, like he was in two places at once. “I’ve never forgotten that,” he said. “I’m glad he lived.”
I thought for a long time about the simplicity of that statement—about how it reflected his gratitude for the outcome without calling attention to his role in making it happen. You imagine the heart as the place where love resides. But in this case, it’s clearly the liver.