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?
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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."
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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.
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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.
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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.
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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!"
*Names have been changed to protect privacy, as have some faces in photos.
To find out more about the author's reunion, read the rest of this story.
- by Elisabeth Rosenthal
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