"I Had to Help Them"
I first entered East Lake in early 2001 as I would enter several other rural Chinese villages that year: smuggled in deep at night, under a tarpaulin in the back of a bicycle cart normally used to carry chickens. As a New York Times reporter based in Beijing, I had come to central China to interview poor farmers who were suffering and dying in a devastating epidemic that few people there had a name for or understood.
But I knew this disease well. Before becoming a journalist, I had trained as a physician at the height of New York City's AIDS epidemic, between 1986 and 1989, when effective drugs were not available yet and patients died, painfully, often within weeks of their diagnoses. In the United States, AIDS was — still is — primarily an urban disease. The mantra of my medical training was the list of groups at highest risk of catching the virus: gay men, hemophiliacs, IV-drug users, sex workers. So when Gao Yaojie, M.D., a retired gynecologist, first told me that HIV/AIDS was rampant in certain villages in rural China, I was riveted but also deeply skeptical. What on earth was AIDS doing there?
As I was hustled from the back of the bicycle cart into a dirt-floored shack overflowing with dozens of villagers in ragged clothes, my skepticism quickly dissolved: One by one, they pulled up their shirts and opened their mouths to reveal a dizzying assortment of infections. I touched foreheads roaring with fever, looked at oozing rashes, and felt lymph nodes so swollen they nearly jumped through the skin. I saw tongues blanketed with white carpets of yeast and skin pocked by the tiny transparent blisters of shingles. When I was a young doctor, before rapid HIV tests became available, we diagnosed AIDS by tallying whether new patients had a convincing combination of typical HIV-related complaints or infections. That night I had little doubt: Every one of these farmers had it.
I spent much of the next year and a half reporting and writing a series of articles on villages like East Lake, where more than a third of the adult population was infected — the result of unsanitary blood-collection practices at rural health centers where villagers sold blood to earn a little much-needed cash. Back then, the Chinese government regarded the existence of the disease in these villages as an embarrassing secret and provided no help to the afflicted. The suffering was terrible, the stories heartbreaking: I saw farmers abandon their fields and die miserable deaths without any medicine or treatment. Fresh graves multiplied with each subsequent visit — a dramatic sight across the Chinese countryside, because the dead are buried vertically, half above ground level, creating a tower of dirt for each body. I watched plump 8-year-olds drop out of school to care for ailing parents, gradually turn hungry and skeletal, and ultimately become orphans. I still cry when I look at my pictures of the white-robed funeral marches and the lonely, emaciated children.
There is an iconic photo, taken in East Lake at the height of its AIDS epidemic, that ran in a number of newspapers and magazines: It shows Dr. Gao surrounded by six village children who had all lost one or both parents, though they themselves were not infected. They sit on coarse wooden chairs, their poverty evident from their cloth shoes and tattered jackets — a paltry defense against the cold in an empty, dirt-floored room with no windowpanes. What's most striking is that not one of them looks at the camera, and there is no hint of childish mischief or mirth. They were, by then, hollowed-out remnants of children, each staring vacantly at the floor or into the distance.
On my last visit to East Lake in late 2002, one of the girls in the photo, Ling,* then 14, described her plight to me stoically: The family home had decayed and collapsed as her parents' health deteriorated, so she and a younger brother were living together in a shack lit by a candle. They were no longer in school because they couldn't pay the fees, and neighbors gave them rice and salt to eat. "I'm responsible for my brother, who is 10," Ling said. "Nobody among my relatives can help. My dad had brothers, but one is dead and the others are sick, too. My biggest difficulty is, I have no future."
*Names have been changed to protect privacy, as have some faces in photos.
Despite my journalistic ethics, which dictate that a reporter doesn't become over-involved with any subjects of her story, I found it impossible not to respond in small ways to the plight of a village whose suffering I'd touched and whose families I came to know. On that first trip, I gave a young girl's parents, sick with AIDS, money to buy their daughter a chest X-ray and medicine for tuberculosis. When readers of my articles sent checks, I used them to buy over-the-counter painkillers in Beijing and sent them to East Lake with a long-haul truck driver. I enlisted my family to help: My mom sent me leftover antiretroviral drugs that had been donated by a charity for AIDS patients in New York City; I then passed the drugs on to a Chinese teenager. My two young children accompanied me to a village for a playdate with local kids, bearing presents of play dough and colored pencils; we treated families to lunch at McDonald's when they came to Beijing for treatment. At one point I seriously considered a request from an HIV-infected woman that I adopt her healthy 4-year-old son once she got too sick to care for him. I ultimately rejected the plan, in part because I so wanted her to live, and (in typical rural-Chinese fashion) there was no such contingency plan for her two daughters.
I did what I could, but my hopes for the future of my friends in these villages were abysmally low: Coloring books and Tylenol were no match for a disease that was properly treated with $10,000-a-year antiretroviral drug regimens. I fully expected that most of the parents would die, and that their orphaned children would end up as illiterate street kids. Once-vibrant farming communities like East Lake, I thought, would simply be abandoned and vanish.
I couldn't bear to think about it as I left China for good in summer 2003, focused more on a return to New York City that felt long overdue after six years abroad. I had a new assignment waiting, and I was eager to get my own kids— who had spent more than half their young lives in Beijing— back to school in the States. They had absorbed the 50th anniversary of the Chinese Communist revolution in Tiananmen Square, but did not know the U.S. national anthem.
Back home, I occasionally would get snippets of information through an informal grapevine of doctors, journalists, and activists based in China (direct contact was impossible due to the lack of phones and to language barriers). Some people with HIV died; relatives took in some kids, while others were given new names and sent secretly to live with families in other provinces. But there was positive news, too. The Chinese government shut down the blood-selling operations and started making and distributing effective AIDS drugs. The Clinton Foundation began providing sick kids with top-notch antiviral medicine. Dr. Gao received prestigious global human rights awards for her role in uncovering the presence of AIDS in rural China. Closest to my heart, a Hong Kong — American named Chung To quit his job as a banker and started the Chi Heng AIDS Orphans Program. The mission: to help children who had at least one parent with HIV stay in school through college— paying fees (required even by public elementary schools in China), providing extra food for families during lean harvests, and arranging first jobs.
As time passed, my mind sometimes drifted to the villagers with a mix of curiosity, guilt, and sadness. As I watched my own children's progress through school— sitting in on debate tournaments, tennis matches, and school musicals like Annie— I occasionally thought of the girl with tuberculosis and the little boy who might have been my kids' adoptive brother and wondered what had become of them.
In spring 2011, Chung To traveled from his base in Hong Kong to New York City to raise money and give lectures. His Orphans Program had grown from a one-man operation into an award-winning organization with more than a half-dozen offices, a collection of libraries it built in rural villages, and more than 9,000 sponsored kids. He had a proposition: Would my son, Andrew, and I like to accompany Chi Heng workers on field visits as volunteers that summer? Andrew could participate in a weeklong summer program for teens supported by Chi Heng, and then we could travel the countryside, checking in on the aid recipients and seeking out other children I remembered. I was eager — but also torn. My worries were similar, I imagine, to those surrounding reunions between mothers and adult children given up for adoption. What would they look like? Would they be angry that I'd left, abandoning their cause? Would I be welcome? And, more pragmatically: Did my 17-year-old son really want to travel halfway across the globe with just his mother, and vice versa? We mulled it over, but in the end we couldn't say no.
We grappled with how to plan a route given that many East Lake families had been fragmented and scattered. Chung To offered a suggestion: that we try to catch up with the six children shown in the photo with Dr. Gao and what remained of their families. Amazingly, he knew the whereabouts of most of them.
So it was that on a steamy day last August, Andrew and I found ourselves in the backseat of a white van with tinted windows, heading for East Lake. I was flooded with memories as we passed landmarks in broad daylight that I had previously spied from my hiding place in the back of the chicken cart: There was the hut the police had used as a checkpoint to keep strangers out of the "AIDS village." And there was the hospital that had served as the backdrop for the careless blood collection — a white-tile building that was far more substantial than I had ever imagined.
As luck would have it, two of the sextet we'd hoped to find were sitting right in front of us, having hitched a ride back to their hometown, or laojia. Though most rural Chinese today leave their villages to study and work, they remain connected to their ancestral homes. Visits are limited by the fact that transportation in central China's rural regions still consists mostly of slow, rickety old buses. But just as in New York City, there's a cell phone in every college student's pocket. So when texts spread that our van would be making the six-hour drive to East Lake from the nearest big city, both girls came along as passengers.
An,* a pretty, gregarious 23-year-old with a degree in early childhood education, was paying a visit to her mother, who'd survived the epidemic: She'd clung to life just long enough to see the day when proper AIDS treatment arrived in East Lake. An's father had already died. "I remember he had terrible pain in the stomach and the head, and how we sold everything — the chairs, the bed, the table — to buy shots of morphine," she said. An only child, she dropped out of school to care for her ill parents; in any case, there was no money to pay for school fees, which could run from $40 a term for primary school to $4,000 for university — a king's ransom for families that even today typically earn only $400 to $500 a year.
Shaped by that experience, An now works for the Orphans Program in another province as resident director in a tidy group home for 10 young orphans, ages 6 to 17, who have AIDS. Ten years ago, these kids would have died; now they have An as a surrogate mom/older sister. (Chinese orphanages still won't take in children who are HIV-infected.) Twice a day she watches as the children swallow antiretroviral medication kept in a small refrigerator. She has created a home filled with schoolwork, singing, and sports — not disease. We had visited earlier in the week, when the house was holding a raucous birthday party featuring cake, hats, and games for a pudgy 10-year-old prankster named Bai Bai.* The next day, she joined us in the van, returning to East Lake in order to plan her upcoming wedding.
Seated in the van next to An was Ren,* a fashionable 19-year-old university student in marketing, whose quiet ways, pale skin, and large eyes made her seem doll-like. For her the return to East Lake — only her second visit home, and her first in five years — was more emotionally fraught. As a bright, sensitive 9-year-old, she had been whisked away to live with a foster family in another province after both her parents died of AIDS. Ren had been forced to give up her friends, her home, even her name. She'd left behind her sister, then a toddler, who was raised by an uncle and his wife.
The van came to a halt in front of a cluster of villagers — simple farmers, holding hands with children decked out in their best clothes — who had been awaiting the arrival of the Chi Heng team. As we clambered out into the heat carrying gifts of boxed cakes and tins of oil, a stick-thin, buoyant woman about my age ran over, took my arm, and gave me a big smile. "Ni huilai le!" she said. "You came back!"
It was Ms. Wei,* one of the East Lake villagers I'd first met in 2001, who had managed to live through the myriad infections of those plague years and was now on anti-AIDS medicines. As our unlikely posse walked down the dirt path to her home, she explained, as she pointed to her hollow cheeks, that the Chinese-made antiviral medicines left patients feeling OK but often skeletally thin. She was now too tired to tend the family's plot of land, which was farmed by relatives.
Ren's aunt and her sister, now a spiky-haired teenager, were also among those who came to greet us. "I wanted to take her, too," the aunt told me as she watched Ren tour her lost hometown, gripping the hand of the sister she barely knew. "But I was already caring for two other brothers and two parents with HIV. My home was not a home; it was a hospital."
I trailed behind the sisters as they walked hand in hand to what had been their family's simple mud-walled home, now many years abandoned. The girls chatted as they picked their way through the overgrown yard. Feeling like an intruder, I meditated quietly: As their parents had lain ill, their greatest fears must have been not death, but what would become of these precious girls. Predeceasing a young child is every parent's nightmare; I hoped their spirits could somehow see these fine young women, their daughters. When we left, I watched Ren press money into her aunt's palm.
As I walked along the dirt paths of East Lake and the other Chinese villages we visited, I was struck by signs of economic progress that had trickled in over the past decade: far sturdier homes with electric lights; kids in trendy T-shirts and jeans; televisions; bicycles; and even a few motorcycles. But there were more important additions: Joy, hope, laughter, and energy had returned. Communities that might have vanished because so many of the adults had died had somehow muddled through. Old people were sitting in doorways gabbing, surrounded by toddlers gleefully chasing chickens. Men were plotting new business ventures: Should they raise chickens for food or rabbits for fur, or (illegally) set up a fireworks factory? I felt giddy listening to these various plans. Chung To said he had been relieved last year to hear two of his students lamenting a divorce in the village: "It was great to hear them worry about normal kid things; I knew the storm was passing."
On my first visit to East Lake, in 2001, a hospital nurse had asked me what caused AIDS and how it spread. Now grandmothers, farmers, and country doctors have become unlikely experts in the molecular biology of this complicated disease. Like the best New York City physicians, they tick off their latest blood measurements of CD4 cells, the disease-fighting immune cells that are depressed by the AIDS virus. They trade rumors about new drugs being developed in Harvard labs the way they once shared theories about harvests.
In another nearby village, a country doctor gave us a tour of his empty clinic, where a decade ago every room would have been crammed with dying patients. Today, the medicine stockroom contains top-of-the-line drugs for herpes and fungal infections, which he proficiently dispenses. How could he not? His son and granddaughter both have AIDS, so he'd better know how to treat it. In that same village, Chung To made a point of taking me to visit a young boy with AIDS named Deng.* While most Chi Heng students don't have HIV themselves because their parents got infected after they were born, a few — like this boy — acquired the AIDS virus at birth. As a toddler Deng had nearly died from a herpes infection that covered his entire body before the antiretroviral drugs arrived, and a few years later my children had bonded with the then shy, nervous child on their play-dough playdate. This time, I found a confident 12-year-old with a crooked smile, some faint scars on his face the only sign of past trauma.
For most children there are terrible memories, of course, and Chi Heng runs art-therapy programs and offers counseling to help them cope with post-traumatic stress. Before AIDS medicines reached villages like East Lake, several hundred of the 2,500 villagers died. At one point there were 10 funerals in one week.
Today, although China's cities are prospering, families here still survive on the crops they grow and meager income from migrant labor. And it's still not easy to live with AIDS: Chinese-manufactured AIDS drugs are limited in number, and it is sometimes difficult to manage the complicated drug regimens in rural health settings. Liao,* a 21-year-old recent university graduate, recalled on a visit how when he was a child his infected parents frequently traveled to Beijing in search of herbal treatments. Now on antiretroviral medicines, his parents are still alive, but like many victims here they are too weak to work the land, and they suffer discrimination. His mom's CD4 count is 200, and his dad's is 60--both would be considered dangerously low in the U.S. His mother is painfully thin; his father's arms and legs are covered in an itchy rash that suggests that the drugs either are not keeping the virus fully in check or are causing an allergic reaction.
One still occasionally sees homes whose doorways are draped with the green or purple banners that indicate mourning. In one, a man told me how his wife had died in early 2010, after spending $10,000 on treatment. Her CD4 count was 400 — too high to qualify for medicines according to current Chinese government standards, he said, though still too low to provide good immunity to some infections.
Our visits turned up other disheartening revelations. I learned, for example, that the truck driver I'd trusted to bring pain medicines back to the village had perhaps not distributed them as I'd hoped. And one of the kids in the photo, a girl named Yan* who was still in East Lake, had recently dropped out of school at 17 after a poor exam result. Chung To implored her to reconsider, at least to go to art school to develop her talent: "Come on, it's important to stay in school — show me your drawings!" he said as we dropped in at the family sitting room, a spartan place decorated with little more than a few stools and several huge bags of grain being kept in storage. As her mother and her older sister, now a nurse, nodded in approval at the pep talk, Yan simply shrugged noncommittally.
Some families I saw were irreparably decimated. We paid a terribly sad visit to an elderly woman who sat on a tattered couch in a home so dilapidated that she was more or less sitting outdoors. Five of her six children had died of AIDS — and the sixth was ill. Her grandson, who cared and cooked for her — but himself had AIDS — lived in a one-room house next door. His parents had both died by the time he was 16, forcing him to fend for himself. Now 18, but looking years younger from repeated illness, the boy talked little and smiled less. What hope could anyone offer?
Though Chung To asked around East Lake, we never discovered the fate of the youngest girl in the iconic photo. Had she died? Become a low-wage factory worker in a distant city? No one could say. I was also unable to find out what had become of the boy I might have adopted — or of his mother — as their village was 600 miles away, out of the scope of my time and travels.
But Chung To knew exactly how to find the brother and sister who'd lived by candlelight in a shack — they are two of Chi Heng's success stories. The girl who'd told me she had "no future" had been wrong, though their journey had not been easy. Even back in New York City, I had heard they'd been sent via impromptu adoption to live with different families in another province by health workers who couldn't bear to hear stories of the two children, hungry and alone, crying each night.
We visited the younger brother in a five-star hotel, a quiet but confident 21-year-old who went by the English name Adam* and worked as a pastry chef. Having completed a baking course run by the Carrefour Foundation and the Orphans Program, he was preparing a cake for another birthday party, this one with 500 guests. He treated Andrew and me to some elaborate candies he'd created; I don't think chocolate has ever tasted as sweet.
I didn't get to see his big sister, Ling, until the day Andrew and I left China, when she came to see us off at the airport. She said her busy job at a medical lab had prevented her from meeting us earlier, but I also sensed a reluctance to connect with a past she preferred to forget. In the airport lounge I made awkward small talk with this poised 25-year-old. As I headed for the gate, Ling thanked me for helping her. It was only then that I realized she was the girl with TB for whom I'd bought medicine on my first nocturnal visit to East Lake. Against the epic backdrop of her life, that 100 renminbi, then about $12, was a minor gesture.
But her thank-you helped me cap an emotional and exhausting week with a sense of hope. Ling and the other young people I'd seen were a testament to the enormous resilience of children and the potential they retain inside despite impossible circumstances. And they were also a testament to the global village of charities, doctors, and good-hearted people who'd swooped in to help the kids when their parents could not.
inspire: live a better life
Editor's note: We will now be publishing Miss Manners articles twice weekly, but you will only see one question and answer per article. You can expect to see these articles appear on Tuesdays and Thursdays going forward.
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