by Tracy Kidder
There are degrees of loneliness, Deo once told me. The worst he knew was to be a poor person “oppressed by diseases.” He said, “You can’t afford to see a doctor. You can’t even talk about ‘This is how I feel,’ because you may be called a weak person. So you make your pain your friends.” And there was the loneliness he’d often felt in New York, the loneliness of feeling that only he understood the plight of the indigent sick back where he came from, the loneliness of feeling that he understood something vital that no one else around him could fully understand. But the author of this book understood. As he read, Deo paused every few paragraphs to think: “Okay, I know that someone is writing about this. I don’t know him, but somewhere there is a circle of friends that I wish I could talk to.” The book’s author was named Dr. Paul Farmer. The dust jacket identified him as “a physician-anthropologist with more than fifteen years in the field.”
Deo resolved to meet the man.
He got his chance about a year and a half later, after he had moved to Boston. One day, heading to class at the Harvard School of Public Health, he saw an advertisement on a bulletin board for a lecture by Dr. Farmer. By then Deo knew a lot about the man: Farmer was an infectious disease specialist at the Brigham and Women’s Hospital, a professor at Harvard Medical School, the principal founder of Partners In Health, and the author of several books, all of which Deo had read. On his way to the auditorium, he bought another copy of Infections and Inequalities—an unusual extravagance for him, but he had left his own copy at Nancy and Charlie’s in New York. After the lecture, after waiting his turn in the crowd around Farmer, Deo got his book signed and also Farmer’s email address, which Deo used only about fifteen minutes later, composing an email and to his astonishment receiving a reply within the hour. Soon after that, he was sitting with Farmer in the doctor’s apartment at Harvard. There were interruptions—phone calls, other visitors—but Dr. Farmer turned out to be able to answer emails while he talked. They stayed up all night talking, while Farmer worked. They spoke to each other in French. Evidently, Paul Farmer didn’t sleep much either. But he had a choice, Deo figured. He imagined that Farmer’s sleeplessness, unlike his own, was self-imposed and purposeful, and therefore admirable.
Deo went to work at Partners In Health, becoming, in the organization’s vernacular, a PIH-er. Actually, they didn’t have a slot for him at the time, but Farmer and the organization’s medical director—a doctor named Joia Mukherjee—created one. “He needed a job, any job,” Paul Farmer remembered. “And we needed someone who could speak French and wade through documents in that language, and by then we knew he was plenty smart.” They kept him busy, looking after Haitians whom PIH brought to Boston for surgeries, and performing whatever other jobs needed doing to support the work in Haiti.
Deo liked all his jobs, and he relished being around Paul Farmer, listening in on his conversations, listening to him talk while answering email. At the moment, in the high councils of international health, there was great debate as to how the world should address the AIDS pandemic, not in the United States and Western Europe, where the disease seemed more or less under control, but in places like Haiti and sub-Saharan Africa, where it was still growing with terrifying velocity. On one side were those who argued it was best to spend all the available resources, which were still meager, on strategies to prevent the further spread of the disease—that is, on prevention. On the other were people like Paul Farmer, insisting that the distinction between prevention and treatment of AIDS was artificial, that the world now had a lot of drugs to treat the disease effectively and must begin to employ those drugs everywhere, along with measures for prevention, especially in the places with the greatest burdens of AIDS. This was what PIH was trying to do in Haiti. At the school of public health, Deo had heard the term “prevention” used repeatedly. But if there was someone who really understood prevention, he thought, it was Paul Farmer, and prevention not just of disease but of catastrophes like genocide. In his mind, Deo distilled the PIH message this way: “By all means, let’s do prevention! Prevent people from suffering! Don’t wait for people to feel like their lives are not worth living. Once they feel that way, how are they going to feel about another person’s life?”
Paul was always going somewhere. Sometimes at the end of a long day and night, Deo would drive with him to the airport. The first time Deo did this, he sat beside Paul in the backseat of the car. He noticed Paul was dozing off. Then he felt Paul’s head fall onto his shoulder. Deo shifted slightly, trying to make his shoulder a more accommodating pillow. He thought, “This is a wonderful, unusual person. I’m so lucky to be with him at this moment.” He told himself, “I am responsible for protecting him. If I had the power, I would have the obligation to keep him alive forever.” The only feeling he knew that resembled this was the feeling of falling in love. When they got to the airport, Deo sprang into action, not on Farmer’s orders, but all on his own. He took control of Farmer’s passport. When they found that the flight to Haiti was delayed, Deo hurried off and bought Paul a sandwich and a bottle of water. Paul said to him, “I wish you could fly with me to Haiti.” But, Farmer added, this would be a bad idea, because Deo didn’t have a green card.
Deo soon was given a more substantial job, as Joia Mukherjee’s research assistant. But unlike many of the other young PIH-ers, he wasn’t sent to Haiti. There was the matter of his immigration status, and besides, Joia thought that sending Deo would be risky. Some people visited the PIH hospital there and spent most of their time in tears. The experience might be hard on Deo, and if so, he might add to the burdens of the Haitian staff. In retrospect, Joia felt she had been unfair to Deo. “We underestimated him,” she’d say. They had their reasons.
As soon as Deo started working as Joia’s research assistant, she began receiving emails from him. Many were full of information he’d found on the Internet about dreadful events, past and current, in Burundi and Rwanda, and, rather alarmingly, she’d see that he had sent them at two or three or four o’clock in the morning.
Joia was working on a scholarly paper to show that treatment and prevention were a single indivisible strategy for dealing with the AIDS pandemic. Deo was supposed to be collecting data and reviewing the scholarly literature for Joia, but he routinely became incensed at the papers arguing against treatment and would send Joia long diatribes, backed up not just with facts, but also with material from the websites of conspiracy theorists. She’d say to him, “Let’s think of concrete ways to make our argument, for the world, and make it less sort of swirling.” He listened, and with her help figured out how to identify reliable websites and journals. When she put him to work on the pharmaceutical industry, much the same thing happened. To Joia, the problem wasn’t that Deo got upset at the way patents on drugs, for instance, left the indigent sick of black Africa bereft of modern medicine. These things upset Joia, too. And it wasn’t as if Deo didn’t seem to realize that anger and indignation were no substitute for fact and reasoned argument. Rather, anger and indignation seemed to take control of him, at least for a while. “Offensive things are so offensive to him. Understandably,” Joia said. “It’s just like he has no skin. Everything just penetrates so much.”
When she was alone with him and there was time to talk, it seemed as though he was compelled to tell her about the genocide, and to recite parts of his own story. There seemed to be no end to this. It was as though he were trying to purge himself of his story, again and again. Joia asked him several times if he would like to see a psychiatrist. He would politely decline, or change the subject, not mentioning that he’d tried that once.
“It was not because I wanted to get out of listening to him,” Joia told me. “But I just was very worried about him. It seemed like he never slept, it seemed like the genocide was such a part of his every day. Not that any of this defied understanding, of course, but I didn’t know how a person could possibly cope with it.” She thought about her own father: she grew up knowing that he had narrowly survived the m
assacres during the partition of India, events just as cruel and bloody as most other ethnic and religious wars, and for body count even bloodier than the Rwandan genocide. But her father had never talked about his experiences. His way of dealing with his memories had seemed to be hypochondria. Joia told me: “He had been sick and dying my entire childhood, and I always thought that he was just strange until I met Deo, and when I saw how much pain Deo had incorporated into his every day, I thought, ‘What are your options if you see that kind of tragedy?’ Your options are pretty much to let it spew out all the time like Deo, or try to suppress it, which is what my dad did, and I think it came out in his hypochondriasis, thinking he was dying all the time.”
Paul Farmer was the only other person to whom Deo told his story in detail. And, as he did with Joia, he told it to Farmer repeatedly. “The first time we spoke privately, he broke like a distressed dam,” Farmer remembered. “I was worried about him, but I never recommended that he see a shrink. It was hard to imagine an American psychiatrist medicating him for having survived genocide in two countries.”
Farmer soon came to think of Deo not as a patient or charity case, but as a friend and colleague in lingering distress. And the best remedy for Deo, he thought, would be a return to medicine.
Deo vividly remembered the hospice in New York where he had worked. That had been a place, of course, where everyone was dying. He had sat beside the patients and talked with them. In his mind, he placed himself in their deathbeds, remembering times when he was fleeing and had felt as they must now: “I probably have maybe a minute for the rest of my life, to be alive, and then I’ll be gone.” He’d sit down beside a patient’s bed and say, “Tell me about your life. Tell me something you enjoyed.” Talking to them so that they could die the good death, he imagined. Many burst into tears. Mostly, they said they felt guilty, for having accomplished nothing compared with what they had planned, or for getting divorced, something they regretted now when they could no longer even try to repair the break.
After that time of hearing deathbed stories, to walk into the offices of PIH felt like one of those transitions he’d read about in Greek myth, when the mortal consigned to the underworld is granted a parole to return to the light. And it also felt, as one said in Burundi to describe a feeling of special warmth and liberty, “like going to Grandmom’s.” Deo said, “Walking into that building was like a whole world opening for me. It was like opening my own house and just right there. I had such an unusual feeling. A great feeling. You enter, you know that you are not just going to work. It’s like you’re going home, and everyone there is so nice and friendly.” Sometimes he stayed all night with the other young PIH-ers, assembling documents and facts for papers that the higher-ups had to present within days in Geneva, in Barcelona, in Moscow. They’d buy pizza and beers, put on some music, and work until dawn. “Oh, my God. It was great,” Deo said. “I actually loved those days.” He liked to go to the meetings where the director of PIH, Ophelia Dahl, and her staff would talk about what PIH was accomplishing in Haiti, a place that Deo imagined to be very like Burundi. In Haiti PIH was building houses and schools for the poorest families and cleaning up water supplies and bringing in doctors to do heart surgeries and constructing new clinics. He would glance around the conference room. It looked so small and organized compared with all the big and messy work PIH was doing outside those walls. “It’s a really tiny place that is changing a great big environment,” he remembered thinking. Then he’d exclaim in his mind, “No group of people is really too small to change the situation!”
He loved all of it, from going to the airport to pick up a jar that contained a Haitian patient’s severed breast and taking it for a biopsy at one of the Harvard teaching hospitals, to pounding computer keys all night so that Farmer or Joia or Jim Kim, another big figure in the organization, would be fully supplied with ammunition to argue the rights and needs of poor patients at high-level meetings that week.
“To be part of that meant a lot, a lot, to me, and made me feel that I was really being productive and participating in the good cause,” he told me. Sometimes he would look up from his computer and around his little janitor’s closet of an office and wonder, “Am I really here?” He remembered thinking, “Finally, finally, this is who I am. This kind of work is not just work. It’s part of me, my life, me. There is no way of separating that and me. It feels so good!”
After some months at PIH, Deo was invited to give the weekly lunchtime talk to the office staff. He had not yet told these colleagues his story in full. He hadn’t tried to do this with anyone except abortively with the psychiatrist and with Paul and Joia. As he began to speak, he felt tears well up—embarrassingly, then not. He couldn’t have dissected all he felt, one feeling from another. Maybe relief was uppermost. It was as if something in him had to compensate for the years of silence. Deo talked on and on, long after the lunch hour, long after the time when everyone had to get back to work. But PIH was the right place for this to happen. Ophelia Dahl remembered sitting there, watching Deo and thinking, “If anyone gets up and walks out now, I’m going to kill ’em.” No one did.
He had been lucky again. He’d found a group of people equipped and willing to understand him, and models for himself, and a vision. He’d made many new friends, including a girlfriend, a medical student. She had since become just a friend, but a close one. James O’Malley had finally got him permanent residency in the United States. And, with a lot of help from Paul Farmer, he’d enrolled in medical school at last, at Dartmouth.
I was once introduced to an old, dying man who had spent his late adolescence at Auschwitz and had refused to speak about it afterward, for nearly forty years. If an acquaintance happened to ask about the provenance of the pale blue numerals tattooed on his forearm, the survivor would say, “I’ve always had great difficulty remembering my phone number.” In old age, though, he had finally begun to tell his story. He told me, “The problem is, once you start talking it’s very difficult to stop. It’s almost impossible to stop.”
By the time I met Deo, he had told pieces of his story to various people and he had been telling all of it repeatedly to Farmer and Joia for about two years. I think he had gone through most of his time of finding it impossible to stop. When I next saw him, two years after we first met, he had grown much more reticent. His story wasn’t pleasant. “It isn’t time for tea. It is not,” he would say. He didn’t want to burden his friends with it anymore. Once, I listened to Deo deliver a rather scholarly public-health talk about Rwanda, and a person in the audience asked him what had happened to him during the genocide. Deo took a deep breath, then delivered a three-minute précis of his escape. By the time he finished, the room was hushed. Deo made a small, pained smile and said to the gathering, “Maybe you are wondering, ‘Why did I ask?’”
Now and then one friend or another would urge him again to visit a psychiatrist. I asked him why he continued to refuse. He said, “It’s true that I really had, I still do have all these problems. There’s no way that they will go away from me. But I deal with them the way I can.” He lifted his chin. “And I’m very happy with the way I deal with them.”
ELEVEN
New York City,
2006
I felt uncomfortable at times, during the two years or so when I was asking Deo my questions. Sometimes I felt that to remind him of the past was to traumatize him all over again. On several occasions, I offered to stop my search for his story and let his memories die, if they would. Once or twice, I hoped he would accept my offer. But he always declined. He’d say, “No, it’s all right.” In retrospect, I feel as though we went on a journey together, moving backward through his past, sometimes on tiptoes, as it were. I don’t know what useful purpose, if any, this trip served for him. For me, Deo was the attraction, Deo and his story. First of all, there was New York.
A young man arrives in the big city with two hundred dollars in his pocket, no English at all, and memories of horror so fresh that he som
etimes confuses past and present. When Deo first told me about his beginnings in New York, I had a simple thought: “I would not have survived.” And then, two years later, he enrolls in an Ivy League university. How did this happen? Where did he find the strength, and how had he won the beneficence of strangers? How had it felt to be him? I asked him to show me some of his New York.
We started in Harlem. Deo hadn’t been there in five years, and as we walked up Malcolm X Boulevard past rank after rank of renovated brownstones and gutted brownstones covered with scaffolding and clusters of new chain stores and banks, he made exclamations. “Look at these buildings! They used to have wood on their windows. This is unbelievable! This used to be the worst place here, people peeing, yelling. Gosh, that building is brand-new.” He wondered what had become of his old neighbors. He said, “This is not good news for the poor.”
He’d never seen joggers in Harlem before, he said, let alone white joggers. Actually, back when he lived here, the only white people he saw were cops, always angry because—so he surmised—always scared. The pay phones, once his only way back to Burundi, were gone. By the time we reached 124th Street, it wasn’t changes in the landscape but the sight of something familiar that astonished him. “Oh my God! Look! ‘PEN’!” The windows and doorways of the abandoned tenement were bricked up, but the graffito was still there, high on a wall. “This was a door right here. There were many entrances. And people used to hang around on these fire escapes.”
Out front there was a bent metal awning with this written on it: “All Cure Health Variety Patties, Natural Juice, Newspaper, Magazine And Lot More.” The awning must have been there back then, already a relic of a defunct store, but Deo said he didn’t remember it. “You know there are a lot of things that I didn’t even look at, things I don’t remember.” What he seemed to recall most clearly from his month or so in this place was his state of mind. He had escaped physical danger. Here the problem had been to escape the torment of memory.