The Age of Aids [home page]

interview: phill wilson

[photo of Phill Wilson]

Phill Wilson has lived with HIV since he was diagnosed in the mid-1980s. His partner, Chris Brownlie, was also infected, and the two men became involved with the AIDS Project Los Angeles, an organization founded in the early years of the epidemic to help spread information. "It was community medicine," Wilson recalls, "and thank God for it, because there was no other medicine." Here, he talks about what it's like to live with HIV and describes Brownlie's illness and death in his arms. Wilson continued working in AIDS activism and founded the Black AIDS Institute to mobilize a response to AIDS in the African American community -- the current epicenter of the U.S. epidemic. "In my opinion, particularly on the domestic front, AIDS has been abandoned by many, many activists, and that makes me angry," he says. "Those same activists -- we thought it was just about us; we promised that we would not stop until it's over. And it's not over." He says African Americans need to develop effective prevention messages for their community. This is an edited transcript of an interview conducted Dec. 7, 2004.

What's your assessment of the Reagan administration on AIDS?

Well, it's difficult to assess Ronald Reagan. It's like giving a grade to a student who never showed up to class. My memory of the Reagan years was [of] a president that just was not present on the issue of HIV and AIDS.

Why was that, do you think?

I don't know why Reagan wasn't present. You could give him the benefit of the doubt. It was an early epidemic, and no one really knew what was going on. Then when you factor in the people who were perceived to be most at risk for HIV and AIDS, they weren't on his radar; they weren't people who he cared about. That legacy, quite frankly, has plagued this pandemic. It comes back to bite us. In the beginning it was white gay men. We didn't care about white gay men; it was OK if they died. Then there were drug users; it was OK if they died. Then it was people in developing countries; it was OK if they didn't have access to treatment.

It kind of reminds you of the poem from Nazi Germany: When they came for the Jews I didn't stand up because I wasn't Jewish; when they came for the anarchists I didn't stand up because I wasn't an anarchist; when they came for me there was no longer anyone left to stand up. The truth of the matter is, we have the pandemic today because we didn't care about the people who really we should have cared about yesterday.

What was your introduction to HIV?

Well, for me, AIDS has always been personal from the very, very beginning. And today it's personal. When people ask me, "Why do you keep doing what you do?," my answer is: "What else am I supposed to do? The virus is inside my body. I don't have the option of escaping. Wherever I go, it will go with me as long as I can go."

In the beginning AIDS was personal. Like in 1981, when nobody really knew anything, I found myself in a doctor's office, and then my doctor talked about this disease, and people were dying, and there wasn't any information, and he had this idea about swollen lymph nodes, and I had a swollen lymph node.

The truth of the matter is, we have the pandemic today because we didn't care about the people who really we should have cared about yesterday.

My partner had swollen lymph nodes, and he biopsied those lymph nodes, and I really don't know because there was no information. Turns out that that those lymph nodes were positive, and a few weeks later a friend of ours who [we played softball with] got sick, and three weeks later he was dead. That was kind of foreshadowing what our lives were going to be like [for] the next 10 years.

My partner, Chris, and I moved to Los Angeles, and in Los Angeles there was again people freaking out, because our friends were dying, and no one knew what to do, and no one seemed to care. We found ourselves in all of these meetings. We found ourselves in the meeting of the Kaposi's Sarcoma Foundation, which later on became the San Francisco AIDS Foundation. They were trying to get the Gay and Lesbian Community Services Center in Los Angeles to form a chapter of the Kaposi's Sarcoma Foundation. The center wasn't interested because it didn't want to be associated with this known plague. As a result of that, the AIDS Project Los Angeles [APLA] was founded. We found ourselves just doing whatever we could, and in the early days all you could do, quite frankly, was to get together and share the things that you had heard. It wasn't that we knew anything; it was the things that we heard. That's actually how I got involved, really just trying to fight for our lives. Today that's what this is about: It's about folks trying to fight for their lives.

In the early days, there was almost nothing that people knew. What would you share?

Before the HIV antibody tests were discovered, we tried to figure out, how do you get infected? At first it had to do with the number of sexual partners you had, and then it had to do with the kind of sexual behavior you had, and then the location, and then the who, and there were all these myths and misinformation.

But mostly it was trying to figure out things so that people would try to just to live a few more days or a few more weeks. People would call in and they would say, "I have this," or "I have that," and what we were doing was collecting symptoms, and you would get to a critical mass of symptoms and you would say, "OK, if you have this and this and this and this, then yeah, you have it." And that's what we would do.

This is community medicine.

It was community medicine, and thank God for it, because there was no other medicine. I remember the first time we had a serious conversation with our doctor about HIV and AIDS. There was so much by that time that we knew that he didn't know because we were spending all of our time collecting whatever information there was, and quite frankly, for probably the first two or three years, there wasn't a time that I saw a doctor or Chris saw a doctor where we did not know more than the doctor did.

Tell me about Chris.

... In 1980 I discovered that I was gay. It just kind of happened, and I began to figure out what that meant. In that process I met Chris Brownlie, and we fell in love ... and began a relationship that lasted until he died. In 1981 we moved to Los Angeles, and by that time we guessed that he had been infected along the way, and consequently we guessed that I was also infected, but we didn't know.

By 1984 he started to have symptoms, and then in 1985 or 1986 -- I'm not sure exactly when -- they came out with the antibody test. By that time he was diagnosed with AIDS, and I tested HIV positive. For the next basically four years we were on this roller coaster, these series of visits to the doctors, these series of moments of hell -- the Kaposi's sarcoma, the Pneumocystis pneumonia, the cryptococc[al] meningitis, all of the drugs, the apparatus, the early days of AZT [zidovudine] and the beepers. We started taking AZT when you were taking it every three hours or maybe every four hours.

[We were] just trying to fight, trying to kind of be activist, trying to get people to pay attention, and using everything in our power to do so and still trying to maintain our humanity, to remind ourselves, despite what we were told by the outside world, that we were still human beings and still deserved to live, and we deserved to love each other and to care for each other. That's what we did, and that's what the entire community tried to do.

I've heard so many stories of people who fought for the [right] to survive. In 1989 we went on our last vacation together. We went on a trip to Sonoma, Ariz., and at that time Chris had a Hickman catheter in his arm. He also had a heplock in his arm, a Hickman catheter in his chest. We were on this vacation with our IV pole, our bottles of meds -- because he took intravenous meds, and so the truck was full of these cases of IV meds. It was God's last gift, because the heplock was supposed to last three days. The longest we'd ever had a heplock last was four days, and we were going to be gone for 10 days, and we could not find a doctor. Our doctor called ahead and could not find a doctor in Sonoma who would change the heplock, and so we finally found a doctor in Phoenix. We'd scheduled to go down to Phoenix halfway through our vacation to change his heplock and to clean his Hickman catheter.

That heplock lasted the entire vacation. We went swimming, and we went hiking, and we went walking, and we came back home, and he got sick, and he never ever really recovered from that illness. Finally he went into this coma, and he would wake up from the coma periodically, and he would talk and would be so lucid. It was the most amazing thing. To this day it's the most amazing thing that I've experienced in the entire pandemic. But he would just wake up, he would be so present, and he would talk to you for three or four or five minutes, and then he'd be gone -- not like in Alzheimer's where the person will still talk, but he would just be back in the coma.

Finally, after about eight or nine days of that he woke up, and he said, "Take me home." I knew what he meant, and so I said, "We're going home," and nobody agreed. The doctor said no; the nurses said no; all of our friends said no. They didn't think that I could take care of him. I brought him home, and we [got] a little hospital bed and all the supplies, and I kept saying, "We won't need all of that; we won't need all of that," because I knew that he wanted to come home to die. He wanted to come home so that the last minutes would be in our space, and so we brought him home.

I remember carrying him into the house and putting him into bed and sitting there with him, and I had been up for three or four days because of making all the preparations to come home. The nurse suggested that I take a nap, and so I took a nap, and I woke up, and I went into his room, and he was breathing, the kind of labored breathing [where] you can kind of hear death happening. You really can.

I climbed into bed with him, and I whispered in his ear that it was OK now; it was going to be OK; that I was going to be OK. We used to sing to each other this song, "Let Me Call You Sweetheart," and so I sang in his ear "Let Me Call You Sweetheart." The words are "Let me call you sweetheart/ I'm in love with you/ Let me hear you whisper/ That you love me, too/ Keep, keep the love-light glowing/ [In your eyes so true]." And he took a breath, and then he didn't take another breath.

I went down to the foot of the bed, and I began to massage his feet, and as his feet got cool, I worked my way up his ankles and then up his thighs and laid my hand on his stomach and then on his chest. I just laid there until his body cooled down. His best friend was in the room, and she began to sing "Summertime." As she sang "Summertime," the sun just popped up through the window and his body went cold. And that's how he died.

I remember coming out of the room and looking out the front door and just being so angry because people were driving to work as if nothing had happened, and my world had changed. That is, in fact, how the early days were for all of us. Our worlds were being destroyed, and our government and institutions and organizations that were supposed to care were behaving as if nothing had happened.

What do you do with that anger?

I took the anger that I had and the rage that I had from Chris' death and did the same thing that I've always done with the anger that I'd had all [during] his disease, and that is to try to do what I can do to make it over, to make it end. It's interesting now, because in my opinion, particularly on the domestic front, AIDS has been abandoned by many, many activists, and that makes me angry.

Those same activists -- we thought that it was just about us; we promised that we would not stop until it's over. And it's not over. It's as simple as that. It's not over, and so we have an obligation to stay ahead of it until it's over. Otherwise it's like -- for me, at least, it's like Chris died all over again.

How would you relate your work in L.A., your activism, to what was going on in the rest of the country?

Well, I think that the work that was done in L.A. in the early days in many ways was the exact same work that was going on in other places. But an interesting thing happened early in the epidemic in California, because in the 1986 election, Lyndon LaRouche put an initiative on the ballot that was the quarantine initiative. Just like the Briggs initiative that happened earlier in California that would have made it illegal for gays and lesbians to be teachers and that mobilized the gay and lesbian movement in California, the LaRouche initiative mobilized the AIDS community in California. It was a wakeup call to a lot of folks, to say that this could be about you.

It was certainly a place for me personally where I realized that AIDS was disproportionately impacting people of color. As early as 1984, 1985, 25 percent of the AIDS cases in America were African American. The majority of children with AIDS were African American. The majority of women with AIDS were African American. African Americans have always been disproportionately impacted by HIV and AIDS.

It was during that window of time when we really realized in the developing world that AIDS was predominantly a heterosexually transmitted disease. That certainly shaped the way, my activism ... from the very beginning, the issues of race and poverty and gender and HIV have always been a critical crossroads for me. I believe mentally that if you are serious in the AIDS epidemic you have to be absolutely committed to dealing with the issues of race and class and gender and poverty.

[How have issues of race and AIDS developed over time?]

The thing that strikes me about the AIDS epidemic is that, quite frankly, it's always been about race, or it's always been about the other, I guess, to be much broader, and that's one reason why stigma has been such a barrier to end this epidemic. In the beginning there were the Haitians, and the impact of the way the Haitians were treated over HIV and AIDS had a chilling effect on the ability of African Americans to respond to the AIDS epidemic, and I think to the ability of Africans to respond to the epidemic. But at that point, there was a line drawn in the sand that said -- and we've not ever been able to escape it -- that it is not really about you; it is about who you are, and if you're marginalized we're going to use this disease to further marginalize you.

We've seen that repeat itself over and over and over again. In the gay community, for example, in the beginning, everyone I knew who had HIV ... was a white gay man, and yet it didn't take long for that reality to morph into all sorts of things. First ... you had to be someone who was a part of the [bathhouse] crowd, and then you had to be one of these sexual athletes, I think was the phrase, and would have to have 20 or 30 sexual partners. Then there was a purer time that it happened to men who slept with black men or other men of color, ... at least in Los Angeles and I think in other major cities, where within the gay community there were all sorts of race issues about access to the bars and the clubs. ...

As the disease has progressed, it continues to be an issue around race, too. Like today when we look at it, for me and African Americans and Latinos and other people of color, we look at the fact that AIDS has kind of fallen off the radar in the United States. One of the things that we ask ourselves is, why has it fallen off the radar? Is there a relationship between the fact that in 2004, over 51 percent of the new HIV/AIDS cases are African American; that in 2004, among women with AIDS, 72 percent of them are black women?

Now, in 2004, no matter what lens you use, be it gender, sexual orientation, age or region of the country, people of color are disproportionately impacted. Is that why it's OK to do flat funding for the domestic HIV portfolio? Is that why when we look at the Ryan White Reauthorization [Bill] that we're having discussions that we didn't have in 1990 about HIV and AIDS? Now, is that why it's OK to increase the number of legislation that criminalizes HIV, to develop programs that focus exclusively on [abstinence] only when before we were talking about comprehensive protection programs? Is that why we have our Centers for Disease Control that are developing policies that say at the crux of our prediction strategy is testing at the same time when there are fewer and fewer resources to get people into treatment?

What are we going to do with all these folks that we find out [are] HIV positive in an environment where we've created a system of criminalizing HIV and we've dismantled the system for treating HIV? Why do we want to know people's HIV status? The conclusion that I think people will draw from that is the reason why we want to know people's HIV status is not because we want to treat them, but because we want to incarcerate them or discard them in some fashion.

We need to be very, very careful about that, and that's why we need to always focus on ending the epidemic no matter where we find it, and we need to always be conscious of the fact that we have the capacity, or least we have to fight for the capacity, to be able to deal with a global epidemic without dismantling the infrastructure to fight a domestic epidemic in the United States.

You told us a story about the role of the church, and that you went to a service where a preacher had some interesting things to say about AIDS. Can you tell us that story?

Everywhere you turn, people want to make AIDS someone else's problem. People aggressively look for the loophole to say, "Well, why isn't it about me?" For example, one of my first presentations to a group of black clergy was in 1984, I believe, and I was giving a talk about HIV and AIDS, and at that time I certainly knew a lot of folks who had died from AIDS. After I'd talked about the disease, I asked the ministers for their help. One of the ministers stood up and said, "This is not our problem, and we're not going to let them blame this on us."

That struck me, because in different ways, we hear that over and over and over again. In 2000 at the Durban AIDS Conference [in South Africa], isn't that what [President Thabo] Mbeki was saying -- "We're not going to let them blame this on us"? Isn't that what they're saying in Eastern Europe right now -- "We're not going to let them blame this on us"?

What's happened is, in our haste to separate ourselves from HIV and AIDS, we have embraced the pandemic; we kind of opened the doors and let it in. That day in front of those ministers, what I said to them was: "Well, how many of us have to die before it becomes our problem? And what are you going to say to the tens and possibly hundreds of thousands of black mothers who have lost their sons or daughters because you did not believe that it was our problem?" ... It's millions now, and as a result, millions of people have died from AIDS, and there's no sign that we're getting closer to stopping the dying.

[Are there ways to specifically reach out to minority men and women with preventative education?]

It is absolutely imperative that we develop messages that resonate with the people we're trying to reach and that those messages come from the folks who we're trying to reach, and rarely has that been the case. Even now in the current political climate, messages have to pass the morality test of people who are not targeted with the message.

It is absolutely outrageous that a message for 16-year-old urban boy who lives in New York City has to pass the morality test of a 70-year-old right-wing minister from Tuscaloosa, Ala. The messages that are targeting the 16-year-old boy in Harlem or Brooklyn or Watts or the South Side of Chicago should pass the morality test of 16-year-old boys who live in those neighborhoods. It doesn't matter if the minister is offended.

I think that abstinence only is both racist and it's murderous, because when we look at who is most at risk for HIV in America today, and they are young people of color and we deny them the tools that they need to save their lives, it is, de facto, costing them their lives. When African Americans and Latinos are disproportionately impacted and we say that there are things that we could tell young people that would make them better equipped to protect themselves and we withhold that information, I think, regardless of the intent, the consequences are racist.

Comprehensive messages are so important. Abstinence has a place in prevention, as does delayed gratification, as does responsibility and accountability. I want the people who I love to have every single tool available to prevent them from getting infected with HIV, because at the end of the day, that's what it's about. If abstinence is what you need, then I want you to have abstinence. If a condom is what you need, then that's what I want you to have. If a dental dam is what you need, then that's what I want you to have. The fact that AIDS has gotten so caught up in issues that are unrelated to the science of the disease, ... I think at some point we're going to all be held accountable for that.

Sounds like you're talking about ultimate judgment.

Absolutely. As a person of faith, everything that I do is driven by my faith. I get up in the morning, and it is by faith that it happens. I've been living with HIV for 24 years now; I've had full-blown AIDS for four. If I don't have faith, who could have faith?

Are you fearful?

I'm lucky that I'm not afraid when I go to bed at night.

How would you characterize the first decade of AIDS with respect to the minority community?

If I were to describe this epidemic in African American communities in the early 1980s, it really is a story of Goldilocks and the Three Bears. The community went off into the forest, and somebody came in and ate all the porridge and slept in all the beds, and by the time the community realized that there was an intruder in the house, all the porridge was gone and the beds were messed. The truth of the matter is that AIDS is no longer knocking on our doors. It's let itself in, and it's raided the refrigerator, and it's upstairs sleeping in our bed. Now the challenge for us is to figure out how to get the intruder out and what is required to get the intruder out, and that's what black communities are struggling with today.

What's your assessment, in retrospect, of the Clinton administration?

During the Clinton presidency, it was a very, very difficult time for AIDS activists, because there were basically two factions. There was the one faction that felt like we should be grateful because he's doing more than Bush and Reagan, and because he's doing more than Bush and Reagan we should not complain. There was the other side that said it doesn't matter what he's doing; he's not doing enough, and so he is the devil. I don't think either is legitimate or effective or useful. During the Clinton years, we needed to figure out how to acknowledge and respond to what was being done while at the same time pushing the envelope more effectively to get done what needed to be done. ...

I think President Clinton has been a much, much, much better ex-president on the issue of HIV and AIDS than he was as a president on the issue of HIV and AIDS, and I've heard him say on numerous occasions there were calls that he made under his watch that today he does not believe were the correct calls. ...

What do you think was the impact of his decision on needle exchange on the African Americans?

Well, I don't think there is anyone, including maybe even the president, who would even suggest that the decision [was] anything other than a cowardly decision. It has had devastating impact across the board, [but] particularly on poor communities, and particularly on communities of color in the United States.

We see the increases in HIV and AIDS that are drug-related and the deaths and the destruction that's happened as a result of the epidemic growing in a way that we still can't prevent from happening. Then the Bush administration has taken an attitude [of] "Well, this policy was put in place by your guy, and so we have no responsibility to change it." That's part of that legacy. It's a no-contest. [Needle exchange] is a public health [issue] that should be supported. We know that a needle exchange program does not increase drug use, and we know that needle exchange programs reduce the risk of HIV.

[What was the cause of the dramatic increases in infections among African American women during the Clinton administration?]

During the Clinton years, we began to see dramatic changes in rising HIV cases among black women. I don't think we know today why that happened, which is the tragedy, because the reason we don't know why that happened is because we've not bothered to find out why that happened. It's continuing today, to the point where, to be completely honest, AIDS among women has become synonymous with black and brown women.

There are a number of things that are involved in that. One is access to health care. One is relationships that are not stable relationships. One is poverty. One is the influence of addiction, either the addiction of the woman herself or the addiction of her partner. One is the mass incarceration of black men. ... If you want to create an environment where someone could get infected by HIV and AIDS, what you would create is an environment that unfortunately too many black women live in. We live in an environment where there's poverty, where there's not access to health care, and where there is [a cultural norm] that creates unstable relationships.

Sounds simple to fix.

No, fighting HIV and AIDS is not simple to fix anywhere, particularly among poor African Americans. It is very, very difficult to fix. But we don't have a choice. However difficult it is, we have to do it; we just have to do it. Failure is not an option.

What happened at the meeting in Durban?

There have been turning points in this epidemic -- for me personally, obviously knowing someone who died from AIDS; another turning point was my mother dying from AIDS. ... But I think that the global epidemic [turning point], particularly as it relates to Africa, was the Durban AIDS Conference.

That was an amazing process, because everyone ... predicted that the conference was going to be a disaster; that there was not going to be the proper facilities for such a meeting; that there weren't going to be places for people to live; and Durban and South Africa [were] too dangerous. People were staying away for those reasons.

Now, I've attended probably all but two, maybe three international conferences, and quite frankly I think that the Durban conference was the best run conference of the whole batch. It allowed people to see up close and personally what AIDS was doing to the continent. ... I think that dealing with HIV and AIDS from a perspective of charity and from a perspective of paternalism is unhealthy. Quite frankly, colonialism got the continent into the mess it is in and does not have a place in getting the continent out of that particular mess. The Durban conference showed the world that there are partners here, and the only way to deal with this epidemic on the African continent is to come in as equals and as partners, and not come in as superiors. ...

What was your reaction to Mbeki's keynote speech?

The discussion for the days leading up to Mbeki's speech were full and intense and hot. There were people who were complaining about what Mbeki was going to talk about, and I kept saying to folks that I thought that President Mbeki would rise to the occasion; that he would use this to talk about the fact that we really had to mobilize. ...

When he got up to speak, my heart just sank. It sank because I knew that in so many ways, that speech meant that people were going to die. It sank because I heard that speech in so many ways, and I witnessed the consequences of that speech -- from the minister who said "It's not our problem," regarding African Americans in 1984; to providers of substance treatment in black communities in the 1990s; to Mr. Mbeki in the year 2000 -- this kind of sticking your head into the sand. ...

I left the stadium in tears, and I remember walking to the press area and a reporter asking me what did I think of the Mbeki talk. I looked at him, and I said, "When it comes to AIDS in South Africa, the house is on fire, and Mr. Mbeki is debating on who lit the match." There's so many times when we've missed the opportunity to get ahead of the crew. We could have gotten ahead of the crew in Africa. We could have gotten ahead of the crew in India. We could have gotten ahead of the crew in China. We could have certainly gotten ahead of the crew in Eastern Europe.

There was a time in the 1990s when people started talking about MSM [men who have sex with men]. Why was that?

... I was actually in the room when that happened, and what that was really about was black gay men trying to convince the CDC [Centers for Disease Control and Prevention] to fund programs to target black gay men. ... Again, if you remember the climate at the time, there was tremendous racial strife going on within the gay male community. ... A lot of black gay men were not comfortable with the term "gay," so a group of us actually came up with the phrase "men who have sex with men" as a way to be more inclusive and just dodge the labeling of gay and bisexual men.

... The truth of the matter is, I have met black gay men, [but] I've never ever met a black MSM. While I support the phrase [as] kind of a literary research tool to describe an inclusive population, we're at a point where I think that it really provides a disservice, and now [with] these kind of acronyms, we've created a whole language that people who work in the field understand that mean nothing to people who don't do this day in and day out, and we've lost our ability to talk to folks who are not engaged full time in HIV and AIDS work. ...

... Tell us about how your illness progressed.

My disease had an interesting kind of journey. I was one of those people who got sick relatively early. My T-cells plummeted really, really rapidly, and I was one of the early people who went on AZT. I started out on AZT, and then I think I went on AZT and d4T [stavudine], and then 3TC [lamivudine] and some combination thereof. I always had trouble with adherence. I didn't really want to take the medicine, so I developed for myself what I called at the time pulse therapy. Basically what I observed is that when I went on treatment, there would always be this kind of artificial bump; we didn't necessarily know that it was artificial, but there would be this artificial bump.

So I would take the medicine until my T-cells would go up, and then I would stop the meds until I would go to baseline, and then I would start the meds again, and they would bump up, and I would stop until they were down to baseline. That worked pretty well up until 1995. During the course, my T-cells were anywhere from 50 to about 150, ... and I would always be kind of hovering.

Then in 1995 I got really, really sick. They did not think I was going to make it. In fact, my doctors called my family and gave me 24 hours to live. I survived that episode, and by that time they were doing the protease inhibitors, and I stayed on the protease inhibitors until about 1998.

In 1998 I went off all drugs. By that time my viral load was undetectable, and my T-Cells were about 250. I got off all drugs ever since then, and my viral load now is about 6,000, and my T-Cells are about 250. We've been monitoring it ever since. It's been this kind of an interesting roller coaster for me. My disease has not been how it's been for most people.

I keep saying that what's kept me alive was really three things: One is I have had access to the best information on the planet; [two is] that I've had the best medical care at whatever the time might have been; and [three is] that I have work to do, and until I get done, I'll be OK.

Have you been driving your doctors crazy?

No, I have a great doctor, and I actually recommend these kinds of relationships. We have a partnership, and one of the things that we're very, very clear about is that this is my life. I get to choose how long it's going to be, and all sorts of things I get to choose. … My life is not a democracy; it's a dictatorship, and I'm the dictator.

Is that something that you brought into the world, do you think, that the patient is the dictator?

AIDS definitely, definitely changed the doctor-patient relationship in a remarkable way, and I think for the better. Before HIV and AIDS, patients were passive. They were often ignorant about their disease, and certainly ignorant about their medicines. I would never ever consider going on a regimen that I did not personally research.

What does that mean, that you get to determine how well your life is?

There are many factors that go into a life, and if I've learned nothing over the course of this pandemic, I've learned that it's definitely more than the process of breathing. I want to live a life; I don't want to just breathe. So for me, quality-of-life issues are critical. Under no circumstances am I willing to participate in heroic measures. I don't want to be intubated.

I have lived an unbelievably blessed life. Now, people may think that's a bizarre thing to say for someone who's lived almost his entire adult life with either HIV or AIDS. The truth of the matter is that I've lived a life where I've had the privilege of pretending that I can make a difference, and if I can hold on to that illusion, it doesn't get much better than that.

I get to have an idea and have repeatedly had the opportunity to see that idea become real, to see it manifest itself. That's a remarkable gift. I have lived a life where I have had love and I have had joy and I have had passion and I've had commitment, and I have the love and support of family and friends. I don't think God promises any more than that.

So you're not afraid of what lies ahead?

I'm not afraid of whatever happens. It's shocking to me: How could you have lived through this experience and be afraid? I meet people who are afraid, and it boggles my mind. How can we possibly be afraid, having seen what we've seen, having experienced what we've experienced? How can you be afraid? How can you do anything short of marching boldly forward, because there were so many people who just weren't able to? If nothing else, I believe we owe it to them to march boldly forward, fearlessly.

If you had to give advice to those who come up, the young people, what would you tell them?

I basically would say to anyone -- young, old or otherwise -- that there will be an accounting, and you have to be comfortable with that. You need to ask yourself every day: "Am I OK with that? Is that going to be all right?" We have to live our lives accordingly. It's important to make a difference. …

I think that we should all think about that, that [the] price of the ticket for life is to leave the world in a different place than you found it, to leave the world a better place than you found it. That's the minimum payment that we owe for the privilege of having spent time on this planet. That's what I say to the young people that are part of my life, is make sure that you at least pay the minimum dues.

AIDS teaches you a lesson about how to live.

AIDS teaches you a lesson about how to live. It teaches you a lesson about how to die. It teaches you a lesson about how to be grateful. It teaches you a lesson about what it means to build community and family and love, and that you have the capacity to do that, and something is dreadfully, dreadfully wrong if you don't maximize that capacity. If you spend time on any single deathbed, let alone on a countless number of deathbeds, and you have not learned that you have an obligation to maximize the gift of life, there is something wrong with you. That certainly is the lesson that I've learned from AIDS. ...

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posted may 30, 2006

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