Some have buried friends by the dozen. Some have given up homes and careers and even families. Some live with fear. None lives with hope.
At the mention of Act Up (the AIDS Coalition to Unleash Power), the images that come to mind are mostly confrontational: noisy demonstrations in the streets of Washington, protesters disrupting services at St. Patrick's Cathedral, a condom-shaped balloon placed atop Sen. Jesse Helms's house.
But the media-savvy national group, which with a march on Congress today completes the second AIDS Treatment Activists Conference (ATAC2), is made up of many moods and voices.
In some way AIDS has touched each of them. Listen to some of their stories:
The Woman Warrior Mary Lucey, 32, a former bus driver and blacksmith and ex-con from Los Angeles, woke up to the fight against AIDS two years ago when she was six months pregnant and learned she was HIV-positive. She couldn't find a doctor to deliver her baby. Not in Riverside County, where she lived then, or in all of L.A.
What she found instead were doctors who prescribed huge doses of AZT that made her lose 50 pounds during her pregnancy. She also found a cause.
"A lot of women don't have the inner strength to fight," she says. "But I don't take no for an answer. So I became an activist."
Now living on disability and fueled by a sense of outrage that the country doesn't address the problems of women with AIDS, she spends about 60 hours a week fighting the system -- and the prison system in particular. (Worried by the probability that she had only a few years to live and wouldn't be able to raise her child, she gave up her baby, who was born in San Francisco, to a couple who have other foster children.)
"We don't know how many women have AIDS," she says. "Doctors say you're not at risk. They don't even include us in AIDS death statistics. My main concern is to get them treated."
Lucey's tactics are sometimes strategic (organizing the first group for HIV-positive women in L.A. County) and sometimes confrontational (participating in a legal protest outside a California prison that housed 3,200 women but had no doctor knowledgeable about infectious diseases and no treatment for women with AIDS).
"I don't believe in violence," she says. "But I believe in aggressive activism: banners, taking over offices with civil disobedience, testifying at state budget meetings, leaving paper trails.
"I think I've helped a lot of women," she says. "It's that simple."
The Convert An award-winning interior designer from Prince William County, Dennis McGee, 41, joined Act Up in May when his 50th friend died of AIDS complications.
At first he'd been put off by the group's militancy. "It wasn't an image that I wanted to relate to, but I wanted to be open-minded," he recalls. Besides, he was HIV-positive himself, and felt he had to do something.
But his family was worried. "Don't tell anyone about your HIV status," his father had warned him. "You'll lose your job. You'll lose your health insurance."
Nevertheless, one Act Up meeting turned him around. "These were people with heartfelt feelings who wanted to educate others," he says, "who wanted to work within the community to establish community-oriented goals."
Now McGee spends what energy he has -- he reluctantly quit his job a while back when his health made it impossible for him to continue -- working with Act Up: lobbying for the creation of an AIDS "czar" and demonstrating whenever needed, and coming to terms with his changed persona. "There are lots of Act Up people who say force equals progress and silence equals death," he says.
McGee is proud that all of his former employers keep in touch with him and continue to give him moral support. "No one has turned his back on me. I was creating beauty ..." he laments, unable to continue.
As a member of Act Up-DC, McGee is at ease with the language of politics and the compromises that may have to be made in this city of compromises. "Here we're probably aware that our tactics may have to be a little more conservative, a little more diplomatic," he says.
But that hasn't stopped him from demonstrating against Robert A. Bunn, the Manassas dentist who ran ads saying that he and his staff had tested AIDS-free, or from worrying about other such assurances that he considers misleading. "We're not an 'outing' group," he says. "But we'll phone-zap the hell out of you if we disagree with your policy or politics."
"The virus doesn't discriminate," he says. "It's in mother's milk, vaginal fluids, blood. That says to me that anybody can catch this disease. ... We've had 10 years to change our behavior. Behavioral change might work in an ideal world. But it's not an ideal world. What about the younger people who believe that the disease is going away, and that they don't have to change?
"I'm not thinking about my own life now," he says. "But if I can save one other person's life, I'll stay in."
The Minister's Son Six years ago, Robert Darrow, now 33, learned he was HIV-positive when he tried to give blood for a friend. He was told he had six months to live.
At that time, little treatment was available. The son of a Southern Baptist minister in Shreveport, La., Darrow didn't want to deteriorate and die among his family and friends. So he told them the news and headed off to New York, where he had arranged a job as the general manager of a large nightclub.
He had several days off a week and time to get involved with helping other AIDS patients, answering phones, handling patient files. His health seemed okay, considering. Then an article in the Village Voice alerted him to danger signs that made him check his T-cell count. It was disastrously low.
Two years after he went to New York, the nightclub was sold and he decided to return home. There a variety of experimental drugs and his family's support helped to stabilize him and allowed him to continue and expand his anti-AIDS activities. "There was virtually nothing happening {in Shreveport}," he says. "It turned me into an outspoken activist."
Now Darrow has just opened a nightclub in his home town. He's organized it so that all of its profits will go toward establishing an AIDS clinic there. It's the only way he can think of to funnel drugs to those who can't afford them.
"I've been fortunate," he says. "I've had private insurance and a little money. The poor and the indigent don't have access to experimental drugs, and I do."
Recently, Darrow's T-cell counts have dropped even further, and once again he has to confront the possibility of dying.
"I was diagnosed in 1985," he says. "Death is my friend. He's with me when I wake up and when I go to sleep. There's not a minute of the day he is not with me."
Darrow feels he has had a good run.
He attributes it to his activity in Act Up. "It's allowed me to release my stress, it's given me a platform in which to educate people, and it's helped me keep up with the latest in drug therapies," he says.
"It's because of my activism that I'm alive today."
The Social Activist "Too many of my friends were sick and dying," says Mark Smith, 26, an economist with a labor union in the District. "There was no way for me to justify not doing anything."
He began going to Act Up meetings after a trip to San Francisco, where he heard people talking freely about their HIV status. "It was the kind of thing you never hear in Washington, where people jealously guard it," he says. "But it made me feel trapped. I realized AIDS and the virus are things I can't escape. It was more how could I not have let myself get involved in AIDS causes before."
Though unwilling to reveal his own HIV status publicly, Smith is perfectly at ease acknowledging that he's gay. But AIDS status is more personal information, he feels, and information that others can alter the balance of group relationships.
Over time Smith has become more at ease with Act Up's "in-the-street tactics" than he ever expected to be. "My community is facing its greatest crisis," he says. "It's something no one wants to do anything about. But civil disobedience and demonstrations have made people more receptive."
And he's angry. At the federal government. At George Bush, "who seems hellbent on doing nothing." And at his friends -- gay men and lesbians -- who are not out there helping.
"When you see people at risk dying and pretending that everything is fine, you just want to throttle them."
The Nurse Amy Meyer isn't infected with the AIDS virus. But the 36-year-old nurse from Columbus, Ohio, says half of the people she knows are.
She got to know them, and Act Up, almost by accident -- through a friend of a colleague, another nurse. Staying with the group and working on an offshoot education fund that focuses on service, research and drugs for AIDS patients has become a matter of conscience. "It's the biggest health crisis this generation will ever face," she says. "The only thing that will outweigh it is nuclear holocaust."
As a nurse, Meyer is professionally concerned with the question of mandatory testing for health workers. She's not afraid of it personally, she says, but she's worried about its morality. "Until we deal with a society that allows people to lose their jobs and their health insurance, we have no right to require people to be tested," she says.
Instead she directs her energies toward alerting people to infection-control procedures and precautions: wearing gloves when dealing with blood or other bodily fluids, double-gloving for surgery, making sure that equipment is sterilized and that doctors and nurses wash their hands between patients. "Most don't," she claims.
"After all, the same precautions that will protect people from HIV will protect you from the other diseases that can be transmitted in health-care situations." Meyer, who describes herself as "the last person you'd think of to be involved with something like Act Up," is angry at the government. She doesn't think it's doing enough to combat AIDS.
But "first and foremost" she's angry at the disease. "It's not so much the inevitability of death," she says. "I've been a cancer nurse.
"Or even that it doesn't care who it kills and that it kills very rapidly.
"It's that it's transmitted most frequently in the way people express love. That's what really bothers me."