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Until he was 14 years old, Jason Thomas (not his real name) spent the bulk of his life in three places: He lived with relatives, he spent time in hospital beds, and he stayed at the Incarnation Children's Center. Today, he can't recall how much time he spent in each place, and there aren't many adults in his life who would have kept a record of it.
At 22, he is a handsome and slender man who wears his hair braided tightly against his scalp. He is polite and sweet-natured, and he jokes around a lot. But when he isn't joking, a serious look comes onto his face. He knows he has had a difficult life.
Thomas was born HIV-positive in 1987. In that year, about 240 children in New York City were born with the virus, and their median life expectancy was estimated at 38 months. Only about half of the children born with the virus in 1987 are presumed to be alive today.
For this meeting, Thomas has come to a restaurant in Washington Heights to meet Mimi Pascual, a former nurse's assistant at Incarnation whose apartment is nearby. Like Thomas, Pascual practically grew up in the Center. She started working the night shift at Incarnation when she was just 17, making barely above minimum wage. She worked there for nearly a decade, until she was fired in 2004, and she's one of the few people who stays in contact with Thomas. A few years ago, she helped him get on welfare and into public housing. He lives in the Bronx, but he came all the way from his job in Brooklyn at a large telecommunications company to see her. He said he was proud to be both healthy and employed.
One of the first things Thomas does is pull out his baby pictures, which he often carries in the breast pocket of his jacket. "The funny part is that I wasn't even supposed to live," he says. "But I showed everyone, didn't I?" He then shows a photo ID that was taken when he was 17. In it, his face is twisted in a grimace.
"That's when I had cancer," he says. It was Burkitt's Lymphoma, a cancer of the lymphatic system that can affect people with HIV. "I graduated from high school on a hospital bed."
When he was just four years old, Thomas was taken out of Incarnation by his grandmother, and then he later moved in with his mother, who was a drug addict. "My mom was cool," he says. "Except when she got high."
At age seven or eight, he got sick and spent a year at Columbia Presbyterian Hospital. Then he went back to Incarnation and later visited his mother, who became hospitalized with AIDS. The last thing he did for her, he says, was put lotion on her body. He says she smelled very bad, and the nurses wouldn't touch her—and he didn't think that was right. "I know I did something for my mother," he says. She died the following week.
It was during his second stay at Incarnation that he met Pascual. For both of them, Incarnation was a defining experience. Thomas says that those memories are actually some of the happiest of his life. He was surrounded by nurses' assistants and volunteers that doted on him and took him on outings and to a playroom. "Incarnation was my playground," he says. "I ran that place." When he was around nine years old, he drew a picture that was auctioned off at a fundraiser attended by celebrities like Rosie O'Donnell.
Pascual's memories have a different tone: Some are warm, but others are traumatic. "When I was working there, I was only 17 years old. We were the official ass cleaners," she says. "Our job was to wipe asses and clean up blood and shove tubes down their throats." The children that Incarnation took in had often been rejected by other foster homes, either because they were too ill or because of the stigma of HIV.
It was a pediatrician at Harlem Hospital, Stephen Nicholas, who had turned Incarnation into a home for sick foster children. Harlem Hospital was ground zero in the HIV epidemic: The hospital was reporting one of the highest number of births of HIV-positive children in the country at the time. As the Times reported in 2005, Nicholas knew it was time to find a place for the most ill children when, at the hospital, one of the patients called him "Daddy." Incarnation's mission, to serve the sickest of the sick, gained it much positive publicity. Princess Diana even paid a visit.
But for the workers, it could be a grim experience. Pascual remembers changing a 13-year-old's bloody diaper in a public park. The medicines that the children took—especially during the trials—had many toxic side effects. When children could not process their medications or would spit them out, the medicines were sometimes administered through stomach tubes. The children would pull the tubes out, she says. Though she was not a nurse, Pascual was instructed to pop them back in.
Pascual had her own photographs to show. One little girl at Incarnation, who Pascual says was about seven years old, looked like she was on the brink of starvation. Asked if the girl had died, Pascual responds, "Of course."