Back in the plane, Serena had said, “I wanted to slug her right in the nose. But I’m a total pacifist.”
In Wilmington, Serena had put on a dress. Her other clothes had been soiled with dust from the gwo wout la. “I can’t go into Mass General looking like this,” she had said. She was worried enough as it was, about what the nurses and doctors there would say when they saw John. It was a prescient worry.
The team at the pediatric intensive care unit was quick and deft, and had John in bed in an instant, but Serena overheard one of the doctors on duty say over the phone to her boss, “He’s all neck and bones!” And so when Farmer called, from Haiti, Serena said, “Hey, we did the right thing.” Farmer was agreeing emphatically, I could tell, and Serena said again, “So, Polo, we did the right thing, I have no doubt we did the right thing.”
In a little while Serena and I went to a room nearby to eat the hospital supper. An intern, a young woman, joined us. She looked very young, indeed almost adolescent, and she was just out of medical school, whereas Serena was an attending physician at the Brigham. But the intern was clearly too upset to care about protocol. Hadn’t they been feeding this child in Haiti? she asked. “I’m shocked,” she said. She added, as if lecturing a student, “Dying from chemotherapy is terrible, you know.”
Serena pursed her lips. She had begun to try to explain—one had to understand what Haiti was like and how hard it was to get someone back from there, and of course John was malnourished, but Paul Farmer, who was a famous doctor, had ordered that John be fed aggressively and had even arranged for a feeding tube, which was something rarely done in Haiti, but even the head pediatric oncologist at Mass General had said that no amount of nourishment would fatten up a child afflicted with this kind of cancer, and John still had his fighting chance—when a small, trim, middle-aged man in a black suit walked into the room. Dr. Alan Ezekowitz, the head of pediatrics. I wondered if he could possibly have overheard the intern lecturing Serena because the first thing he said, in a loud, brassy voice, smiling at Serena, was, “Well, this boy is a challenge. But I’ve cured sicker kids.”
Serena laughed nervously. She said, “Well, now he’s in Man’s Greatest Hospital.” That was what Mass General people called the place, playing on its initials, MGH.
Dr. Ezekowitz chuckled. “As soon as we start to believe that, we won’t be.” He turned to the young intern. “Isn’t that right? We can always do better, can’t we.”
The intern bowed her head. “Yes, Dr. Ezekowitz.”
The next afternoon Serena called me and said that a formidable phalanx of radiologists, pediatricians, and cancer doctors had just spent an hour studying John’s X rays and bone scans and CT scans. Then, weeping over the phone, she said, as if all in one breath: “It’s everywhere. It’s in his mouth, it grows into the vertebral bodies. The poor kid has been in horrible pain. It started at the nasal area, just one solid tumor, growing back into the spinal column, the roof of the mouth. You can’t radiate four vertebral bodies. So he’s gonna die. He’s getting excellent care, but there’s still a bit of why did you bring him? Why? Because, A, he’s a human being, and B, because I didn’t know he couldn’t be treated, and C, why shouldn’t he have a comfortable way to die, why shouldn’t his mother have a private room without flies on her face to grieve in? Can we not have him in a place where people are trained in palliation? Isn’t palliative care important? And a place where his mother can grieve in private instead of an open ward with flies all over her face?”
John did get first-rate care, of course, and all the right drugs at the right doses so that he was never in apparent pain again. Serena and Carole spent most of the next two weeks in his room, taking turns sleeping there on a cot. John’s favorite toy was a broken child’s tape recorder which had a play phone attached. He’d pick it up and speak into it.
“Who are you talking to?” Carole asked him in Creole.
“My mother.”
“What are you telling her?”
“Vini, vini.” “Come quick.” He motioned for Carole to say the same words over the phone, and she did, and he was satisfied.
His mother arrived within several days, along with Ti Fifi, who had made the arrangements. Farmer spent a great deal of time with John in his hospital room. Every PIH-er visited, and so did many from Boston’s Haitian community, and his room—it had a lofty view, out over the Charles River—was crammed full of toys. Serena set up her apartment as a hospice, and a couple of days after John was moved there he simply didn’t wake up. Carole sat on the bed beside him and listened, her hand on his wrist. He had Cheyne-Stokes respiration, shallow and quick, and then a minute of apnea, and then she couldn’t feel his pulse.
It seemed to me that things had turned out as well as they could have for John, under the circumstances of Haiti. PIH-ers spoke in fiery terms about those. Several said to each other, “Thank you for not letting him die there.” Not that anyone was pleased at the outcome. The fact was the boy might have lived if he could have been extracted from Haiti sooner. But there were other consequences, surprising and consoling.
Farmer offered John’s mother a job at Zanmi Lasante, and a large collection was taken up for her. Ti Fifi warned against giving her too much money at any one time, which was a good thing, an object lesson in how dangerous good intentions can be in a place as poor as Haiti. In the central plateau, word travels more quickly than most people do, and it stood to reason that a woman whose child had been flown in a jet to the United States, to peyi kob, “money land,” would have some cash lying around. Robbers broke into her family’s house outside Hinche. But thanks to Ti Fifi, there wasn’t anything there worth stealing, and the thieves didn’t return. As for Ti Fifi’s fear that parents would besiege Zanmi Lasante with demands that their sick children be flown to Boston, too, nothing like that occurred. The next time I was in Cange, I asked Zanmi Lasante’s chief handyman, Ti Jean, what the people in the region were saying about the case. He told me that everyone talked about it. “And you know what they say? They say, ‘Look how much they care about us.’ ”
Serena had worried that this might be the last time Mass General would give one of their Haitian patients free care, but less than a month after John died, she was flying back from Haiti with another child—a little girl from a village across the reservoir from Cange with a malignant tumor on her kidney but excellent prospects and well enough to fly commercially. Mass General was waiving the cost of her care.
The staff in pediatrics had warmed up considerably to Serena and Carole. Dr. Ezekowitz especially. He was impressed at the attention they’d paid to their patient and liked to have his own staff witness it.
He sought out Serena and said, “You’re a great advocate for your patient. You must be proud of yourself.”
She said, “I’m not proud of myself. Patients are dying in Haiti. The mess Haiti’s in is nothing to be proud of.” But this was an opening she wasn’t going to miss. “Dr. Ezekowitz, I would like to explore a collaborative effort. Do you think you’d like to meet Paul Farmer?”
Ezekowitz was eager to meet him, in fact. He knew of Farmer. “I think Paul is quite remarkable,” he told me later. He said he thought that hospitals like Mass General had a responsibility to provide free care to patients like John. “And I think free care serves an important purpose, in that it centers people. Poverty in a place like Haiti is difficult to personalize. If it’s in front of you, it has a reality.”
So the meeting came off well. Farmer said, “If I might be so candid, we need help. What would you think of taking a couple of our patients a year?”
And Dr. Ezekowitz said, “Oh, I think as a minimum.”
Watching the PIH-ers extract John from Cange, I had at moments, in my darkest thoughts, worried that the event might have more to do with them than with John, more to do with proving the organization’s capacity for heroics than with saving a child. But then I thought: An idea like that would never have occurred to me if John had been my son. You do all you
can for a patient. If I were seriously ill myself, I wouldn’t find that policy unreasonable.
And yet a feeling lingered with me that the whole episode was like an object lesson in the difficulty of Farmer’s enterprise, perhaps in its ultimate futility. I planned to ask him for his thoughts about the case, after a decent interval.
CHAPTER 26
It’s December, two months since the medevac flight to Boston, and I’m back here with Farmer again, on the other side of the great epi divide. In the last light of the day, the outskirts of Port-au-Prince look the same to me as on every previous trip, chaotic, squalid, broken-down. For a time, driving out of the city toward the kwazmans of Morne Kabrit, we follow a tap-tap with some words of social commentary painted on its bumper. In translation from the Creole, they read: “Lord, a word on all this.” Farmer laughs.
As he drives into the mountains, driving fast as always, the headlights bounding over ruts and boulders, I ask him how many e-mails he is receiving now. “About two hundred a day,” he says. “It’s still doable.” Which is what he said a year ago, when he got about seventy-five a day.
He tells me, “Something’s gotta give. But, as has been noted, I’m not burning out.” In the light from the dashboard, I see his jaw stiffen, a momentarily pugnacious look. “And I’m not jaded either.”
Once again we arrive in Cange jostled and long after dark, but without mishap—no accidents, no encounters with zenglendo—and Farmer gets out of his suit and into his Haiti clothes, and we sit down under the bower, dripping with vines, outside his ti kay. Ti Jean brings us supper and joins us.
Ti Jean is a muscular man with a wild grin, the son of a local peasant farmer. He’s about thirty, old enough to have witnessed all the stages of the transformation of Cange. “It’s a marvel,” he says. “People were living here like pigs in a pigpen, but now you have to knock on their doors.” That is, he’s saying, they now have doors.
In addition to his role as chief handyman, Ti Jean serves as Farmer’s main local male confidant. “My chief of staff,” Farmer calls him. He has the right attributes. Ti Jean gives portions of his own salary to destitute patients. He has said, about National Highway 3, “I’d rather we have a fixed road and a hundred thousand extra patients a year, because it’s our vocation to receive them.” He has told me that if he were a philosophe—if, that is, his family had owned enough pigs to send him to high school—he would write a book about the Haitian bourgeoisie. An angry book, he says. He knows something about medicine and shares Farmer’s scorn for notions that there’s special virtue in a culture’s old technologies, in the idea for instance that herbal remedies are generally to be preferred over manufactured drugs. He is also one of Farmer’s chief informants on local beliefs.
To Ti Jean, animals aren’t always what they seem.
“See that black dog, Polo? Was it here yesterday?”
“No.”
“And did it bark twice?”
“Yes.”
Ti Jean will nod knowingly. “Mmm hmmm.”
In Ti Jean’s cosmology, as Farmer understands it, people turn themselves into animals for shifty reasons only, or else sorcerers turn them into animals as punishment, or simply for food. Farmer interprets all this as “a giant morality play, a commentary on social inequality.” He adds, “Almost invariably.”
After we eat, Farmer turns on the underwater lights in his fish pond, then gazes in, naming the species. A good guest now has to join him over the fish. I say this seems to have replaced hortitorture.
“No,” says Farmer, still gazing in. “It’s the same as hortitorture.”
Ti Jean remarks that the pond cost a lot of money, then says to Farmer, “As if I wouldn’t approve. It’s not one thing that makes you happy. If you only saw patients, you might not be happy.”
What about all his travel? Farmer asks him.
Ti Jean allows that Farmer travels a lot. “You’re like a nestless bird,” he says.
“Where is my nest?” Farmer asks.
“Your nest is Haiti,” says Ti Jean. “You go everywhere, but this is your base.”
Of the patients I met on my previous visits, a few have long since been buried, many more have gone home, and some have stayed. A lot of the staff involved in teaching disease prevention are former patients; they tend to be zealous and they have credibility and, besides, some got sick in the first place because they were especially vulnerable. A year ago there was a family of five here all being treated for MDR. They’ve all been cured and have left, except for one of the sons. He believed he was responsible for infecting the rest of his family and was so extremely laden with guilt, and so neurotic about so many other things, that Farmer decided he couldn’t send him away to compete for food again. So he’s hired him, as a TB “outreach worker.” Ti Ofa, the young man who told Farmer that he wanted to give him a chicken or a pig, has gained eight pounds since he started taking anti-AIDS drugs. The old woman who believed her son had killed his brother through sorcery has come around, after many consultations. And the lawyer Farmer hired has finally got the young security guard from Kay Epin cleared of all charges and out of jail. But in a place where medicine is still scarce, and where food is scarcer than ever and the legal system is at best rudimentary, there will always be more sorcery consults and prison extractions to come. And always more patients, of course.
Some months back, a boy named Alcante arrived at Zanmi Lasante’s Children’s Pavilion. Like John, he had lumps on his neck, but his were in fact symptomatic of scrofula. First-line drugs wiped out the infection. The swellings disappeared, leaving only a few small scars, and Alcante gained eight pounds, about 10 percent of his total weight. The boy was thirteen, and seemed younger because he was so small and trusting. He was the kind of child who takes strangers by the hand, and he was very beautiful looking—a perfect little body, shiny dark eyes, dimples. He changed the atmosphere in the Children’s Pavilion and lessened the tightening Farmer felt in his chest as he climbed the stairs to that wing. For Farmer, the children’s ward contained Zanmi Lasante’s most harrowing sights and painful ghosts, and I think Alcante came to seem like the guardian angel of the place, or like Farmer’s. He kept the boy in Cange several weeks longer than necessary. He called him “a P.O.P.”—a prisoner of Paul. Finally, he sent him home.
As a rule, a child with scrofula gets it from a close contact, usually the mother or father. So one of Zanmi Lasante’s community health workers brought the rest of Alcante’s family to Cange—they were “trolled in,” as Farmer puts it. Several had TB, including Alcante’s father, who is still in therapy. Now Farmer wants to see for himself what home means to Alcante. He plans to hike to their homestead. “The family is so afflicted,” he explains, then adds, “Some people would say this is a scattershot approach. We would answer, ‘Not at all. It’s through journeys to the sick that we identify needs and problems.’ ”
Alcante lives in a town called Casse. The hike is longer than the first long one I took with Farmer to Morne Michel, but the trails aren’t as steep. This is what he told me last night. So I have only a vague idea of how many hours the trip will take, until we’re walking out the front gate and Ti Jean, who is coming with us, asks if I have brought my flashlight.
I haven’t. I offer to go back for it. Farmer doesn’t think I should. Inevitably, some emergency will have cropped up, and going back will get him entangled in it. Delay now will mean further delay. Farmer is wearing a baseball cap, which looks a few sizes too large, and for a moment I imagine him a gawky teenager on the way to a ball game with his dad. His thin frame and the shininess of his face make this possible, and also a quality of innocence that surfaces at times—he’s apt, for example, in the midst of an erudite discourse on the economic distribution of infectious disease, to startle you by interjecting, eagerly, “Ask me a question about Lord of the Rings.” He’s reread those books again and again over the years since he was eleven. But now he’s leading the way out of Zanmi Lasante, in every sense the man in charge
, and I realize I’m not worried about the flashlight. This strikes me as unusual. I’ve never found it easy to trust another person to lead me anywhere, but I trust Farmer.
We head off along dirt paths etched into the sides of the hills beside the Péligre Reservoir, and soon I’m scrambling up the eroded face of a cliff. I’m drenched with sweat by the time we get to the top, where Farmer is waiting for me. I’m reminded of the epic hike to Morne Michel. As we go on, Farmer calls back over his shoulder—his voice makes it plain he’s joking—that if I have chest pains, I should tell him right away. I take a long swig of water as we stride across a ridge through yellow grass, Farmer pointing out “the peculiarly steep and conical hill” on which he sat in solitude years ago, writing AIDS and Accusation.
Ti Jean is carrying a large water jug, filled from a tap at the medical complex. It’s potable water. Farmer and Ti Jean have immunity to whatever microorganisms it contains, but American visitors who drink it often come down with bowel troubles, not dangerously but uncomfortably. So I’ve brought my own jug of filtered water, but it isn’t very large. By the time we make our first stop, I’ve drunk half, and Ti Jean and Farmer and Zanmi Lasante’s pharmacist, who is also coming along, haven’t even opened their jug.
Farmer has planned an intermediate house call on the way to Alcante’s home in Casse. Somewhere in the mountains, we stop at a hut—two tiny rooms, dirt floors, a roof of banana fronds, pro-Aristide posters on the walls, and an elderly-looking couple sitting together on a straw mat. Farmer has brought along the man’s medical records. He sits down on a chair near the doorway and reads aloud from them. “Since 1989 he’s been coming to ZL and he’s been getting antihypertensives. I saw him last in 1997 and he had malaria and then it says, ‘Come back Thursday for a follow-up.’ He didn’t come back. And oops, here we go, it says here, ‘Trouble standing up.’ And his son had come for medicine for his blood pressure.” Farmer kneels on the dirt floor and takes the man’s pulse and blood pressure, then puts on a stethoscope and listens to his chest for a while. Cocks crow outside. The air inside is still and hot, vibrating with flies. The old man says he felt a little pain at the center of his chest and afterward weakness in his legs. Farmer says to me, “I know what I’m going to do. Get his blood pressure down to normal, then get him two Canadian crutches. I think he probably had a stroke, but he should be able to recover is what I’m saying. His deficit is minimal. So I have to get somebody to help me get the Canadian crutches here. To get his blood pressure just right would be easy at the Brigham. It’s not easy here, and how do we check and make sure he’s doing his physical therapy?”