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May 29, 2008
I'm here today with long time AIDS activist and writer Mark King. When Mark was 20 years old, he moved to West Hollywood. It was the early 1980s and he was set on pursuing an acting career and enjoying the gay scene. He never expected to find himself in the middle of the darkest time in the U.S. HIV epidemic, caring for close friends as they ailed and died, while struggling with his own diagnosis. In this interview with The Body, Mark recounts the tremendous courage of people who fought through the epidemic in those early years. Mark recently had his first book published, a memoir movingly detailing the ten years he spent in Los Angeles in the 1980s after he finished college.
Mark, as one of the few HIV-positive people to survive the 1980s, did you feel you had to write this book?
Yes. As a matter of fact, that's a great way of putting it. I did feel as if I had to write it. I felt as if there were so many stories there and I felt it was the least I could do. It was the least I could do for the memory of the friends that I lost as well as sharing our history, telling the story to people who are going to come afterwards.
Could you summarize what you did after you finished college?
Sure. I went out to Los Angeles right after college to pursue the Hollywood dream. I was 20 years old and I had bright red hair and I looked like Opie Taylor. I had done some acting and I figured I'd go out to L.A. and do a bunch of T.V. commercials. Which is actually what I did. I started working as an actor, although that didn't pay so well and checks were sparse. Soon I found myself working for a telephone fantasy company.
In the olden days, before people had computers in their homes, there were services you would call and use a credit card and order someone to talk to. It was a telephone sex company. That actually became so wildly popular that I opened my own company. At the same time I got involved in cocaine use. In short order, this young kid turned from being a wholesome actor in McDonald's commercials to being a sexual entrepreneur and drug addict.
That behavior and that business was eclipsed when AIDS came along and started its big march through the gay community in the early 1980s. We were all given completely different marching orders, as it were. Suddenly, we were told as men, "You can continue doing what you're doing in terms of sexual behavior and in terms of what you value and where your priorities are, or you can help take care of the sick and the dying and do something about what's happened."
I found myself changing once again from a very selfish, self-absorbed guy in my mid-twenties, pursuing sex, drugs and money, to someone who was working for a very small salary at an HIV/AIDS service organization. That's where I found my meaning, and that career continued as I left Los Angeles and went on to Atlanta ten years later.
I know a lot of people didn't get tested back in the 1980s since at that point HIV was considered a death sentence, and because there were no treatments there was no point to get tested. What made you get tested and how did you deal with the results?
I just had this morbid curiosity. You're right; it was politically incorrect to get tested. Absolutely not would you want to do that, and we didn't need any evidence of the stigma and discrimination associated with HIV; we saw it all around us.
I had friends who couldn't go get a manicure because they were gay and the people in the manicure shops wouldn't give them manicures because they were afraid of getting HIV. I had friends who were thrown out of their houses, deserted by their families, all of that. The news was all bad if you were HIV positive. There was no good news. There were no HIV drugs of any sort.
That being said, I had this morbid curiosity, and I couldn't help myself -- as soon as the test was available I took it. I had a friend who worked in a doctor's office. He was a nurse and he let me in there after hours. I went in there and he drew the blood for me and my partner and did it after hours so there was no medical record of it, and then, of course, called a couple of weeks later with the results.
I guess one of the reasons I took the test is that I thought that I probably was HIV positive. I knew what my own sexual behavior had been, which was probably not uncommon for a 21-, 22-, 23-year-old in West Hollywood in the early 1980s. Nevertheless, I knew that I had been promiscuous. I knew that my chances of escaping this were pretty slim. I guess I just wanted to know what the truth was. That's why I took the HIV test. I didn't handle it, I would think, very well because it made me feel even more fatalistic I guess. I was already very into my drug addiction with cocaine and I thought, "What the hell?" It gave me license to continue a self-destructive path rather than a wake-up call. It was just a license to self-destruct.
You recount in your book a little bit about those times. Once you tested positive, did you feel that you were going to escape this? When you saw other people get sick around you, how did you feel?
It's funny. How did I feel? How I felt especially during the times of my drug addiction with cocaine is a very good question, because the cocaine was designed to help me not feel. I was medicating myself through a terribly bloody war. My friends were all dying. I had friends who went to work on Friday, felt bad, and were dead by Monday. They just came down with pneumocystis pneumonia or something over the weekend and they were dead in three days. It was a war zone, and I was doing everything I could to medicate myself against it. I'm not saying that that was the right thing to do. It's just how I chose to deal with it at the time. That's how I responded to that.
In a way, I felt like a child who plays invisible when bad things are going on around them. They hope that if they're invisible, the monster won't get them. That's the way I felt during those early years -- I'm just going to pretend this isn't happening and maybe it won't get me.
You compartmentalize those things. On the one hand, I was taking care of friends. I had friends dying in my house in the guest room. Yet, I had compartmentalized that and told myself, "This isn't going to happen. This isn't going to happen to me."
Did you ever find out why it didn't happen to you? Do you have something special that allowed you to survive this long?
No. It's completely pure luck. I would like to think that it was my attitude or my lifestyle, but certainly my attitude and lifestyle suffered. I was a drug addict and I didn't necessarily take good care of myself. My attitude went back and forth. Between the denial of not believing it would happen to me, there were certainly times of deep, deep fatalism where I knew it would happen to me. Every death was a preview of coming attractions for myself.
"I saw so many people that I admire, who were wonderful people, who were helpful to people around them, who worked at AIDS agencies in the early years when there was no hope, who had AIDS themselves. You would think, "They're going to make it. Because they've got the right attitude and God has blessed that person." They died anyway. I saw people with perfectly good attitudes die anyway. The random nature of it made it all the more hellacious because there was no rhyme or reason."I saw so many people that I admire, who were wonderful people, who were helpful to people around them, who worked at AIDS agencies in the early years when there was no hope, who had AIDS themselves. You would look at these people, like Daniel Warner from the Los Angeles Shanti Foundation, people like that who had a special light about them. You would think, "They're going to make it. Because they've got the right attitude and God has blessed that person." They died anyway. I saw people with perfectly good attitudes die anyway. The random nature of it made it all the more hellacious because there was no rhyme or reason.
You describe in your book a night in L.A. with around 500 men, mostly with HIV, who had gathered to listen to a woman named Louise Hay. Can you tell us about that night and about what kind of attraction this woman had?
Sure. That was an amazing experience. Louise Hay happened upon the scene, being at the right place at the right time. She was a self-help guru who made her reputation as someone who claimed that she had cured herself of cancer. She said she did it through a process of self-love and positive affirmations for herself. Now whether or not you believe that, she certainly had a very strong persona. She started hosting what they referred to as the Louise Hayrides at West Hollywood Park there in West Hollywood. I had heard about them but never gone. My older brother who is also gay, his partner had AIDS at the time. They had started attending and they said for me to come along.
Mind you, up until that point, which was around 1986 or so, 1987, my personal nightmare of AIDS was very, very personalized to those around me. I wasn't getting out and doing anything really public or going to town hall meetings. I was simply dealing one-on-one with friends who had it. Here I walk into this hall, and it's stuffed. It's overflowing.
There are people sitting on the floor, and they are almost without exception all gay men. They had come to hear Louise Hay talk about her message of loving yourself and forgiving yourself and getting well. It was an amazing sight. I had never seen so many people with AIDS all together. It was that moment that I realized, "This isn't just happening to me and my circle of friends. Oh my God. This is big! This is really big!" There were people in wheelchairs. There were people out the door sitting outside trying to listen through the door to what she was saying. The message that she had was so appropriate for that time, because she was saying:
a) You can survive. Which people with a terminal disease like to hear; and
b) Love yourself.
We as gay men had only just gotten to a place socially and sociologically in our society where we were even accepted just prior to AIDS. We were coming into our own and feeling more secure in our society and then AIDS came along and branded us as keepers of disease.
That message of hers, "Love yourself. You're okay." was a wonderful, beautiful message for all these men. Many in that hall were staying in the guest room of a friend because their families had thrown them out or, like I say, couldn't go get services somewhere and weren't welcome in other friends' homes anymore.
For this woman to come forward and say, "You are loved. Love yourself. You can survive this." It was the right message at the right time.
Can you make this room come alive a little bit more? What was the average age, would you say?
It was hard to know how old everyone there was because they were so covered in disease. There was so much Kaposi's sarcoma, and people's hair falling out, and so many of them looked ancient who may not have been out of their twenties. I would say that they were mostly in their twenties and thirties.
It was as if you had taken everybody from the dance floor of the biggest, most crowded gay club in West Hollywood and then walked them through wardrobe and makeup of a horror movie, of the latest zombie flick, and then stuffed them in this hall.
When you say they had Kaposi's sarcoma, that meant they had purple --
Oh yes. They were covered in lesions. They were unrecognizable. Their eyes were swollen shut. Their hair was falling out.
I want to say it was so pathetic, because they were pitiful. There's no doubt about it. I was healthy at the time, but watching the sight was so pitiful and yet the fact was that they were all coming to sit in the glow of this woman and collectively believe that they could be okay. She had songs that she enjoyed that she had written that she would sing. "Spirit Am I" and "I Love Myself."
"To have 500 gay men who don't know if they're going to live out the month, sitting together with their arms around each other singing "I Love Myself" when they were branded as disease-carrying pariahs by virtually everybody outside that room was an amazing, profound sight."To have 500 gay men -- most of whom didn't know if they were going to live out the month -- sitting together with their arms around each other singing "I Love Myself" when they were branded by virtually everybody outside that room as disease-carrying pariahs, was an amazing, profound sight.
Did you go to more than one meeting or was that it?
Yes, I went more than once. There was a metaphysical nature to the meetings. There was a stage in the hall and on that stage they had placed all of these massage tables and people with quartz crystals who believed in the healing power of quartz crystals were sitting on the stage ready for people to come.
I think the people in the room would have tried anything. This was at a time when there was no treatment. AZT [zidovudine, Retrovir] maybe had appeared on the scene by then. People were talking about getting their blood sucked out of their body and exchanged with whole new blood and getting their blood heated. They were talking about spirituality, about going to a certain place or having crystals placed on their body and energy. They were experimenting with every alternative thing you could think of because there was no mainstream medication.
This was a time when there was no viral load test.
And the thing that everyone knew were the 16 opportunistic infections that you could get.
Yes. There was no tracking for it. In other words, if you're HIV positive now, they can not only tell you what your viral load is and what your T cells are, they can tell you what strain you've got and what drugs it might be resistant to and all of these things. At the time, you didn't see it coming. There was no test to see it coming. There was only a test for your T cells and they could see how bad off you were. They didn't know how many viral replications were in your body. They didn't know how close you were to acquiring an opportunistic infection. It was a total crapshoot.
So every symptom could mean that you had some new problem.
Oh my God, it was a daily ritual for every gay man at that time to check every place on their body they could possibly see in the shower and look for a spot. They did so with great trepidation and fear. We were checking ourselves all the time. We were checking each other.
If you even ventured out to the bars anymore, of course that was not the activity it once was, but if you were in the bars during that time, you were looking at that other guy too. If you were considering hooking up with somebody, you wanted to see as much of his body as possible before you went home. You did this not to see if he had muscles. You wanted to see if he had marks.
Of KS [Kaposi's sarcoma].
Marks of AIDS.
Were you also looking to see if people were losing weight?
Yes. People would disappear from the bars and you would just assume they died. Chances are you were right. You would go to your neighborhood bar -- if you felt in the mood anymore -- if you went to your neighborhood bar, people were missing. Bartenders were missing. They were dead. You didn't even ask. If you did see somebody after a long period of time, you hugged him like you hadn't seen him since you were kids, because you thought they were dead. You hugged each other for dear life, because you figured if you hadn't seen a friend for a few months, for whatever reason, and you ran across them somewhere, it was like they had come back from the dead.
At some point, there were so many people sick and dying everywhere that it became just part of the emotional landscape. What did that feel like? I guess you got used to it, but when you told your parents or you talked to them, they lived in a different world.
Yes. When I took the test for HIV -- and I took it early on, as soon as it was available -- I called home and told them results. I was living in just enough denial myself that I almost probably convinced them that maybe I was OK. I said, "Look, I am positive, but I don't want you to worry because it doesn't mean I'll ever get AIDS. It just means that I have the virus, but don't worry."
At least on the phone they sounded like they were satisfied with that explanation, but I know they couldn't have been, because they watched T.V. They knew what an HIV test result really meant. I think that they allowed me just to live in my denial without pushing it, because really what was the point?
During that time there was a feeling of pointlessness, a feeling of existentialism, that we were just all living in a nightmare that made no sense. It seemed so unfair, and it intersected so perfectly with those people who were ready to hate us anyway, people who had prejudices against gay men, or religious differences with gay men. This said that so completely. They could look to it and say, "See, you got what you deserved," or, "See, God is punishing you."
If you were a gay man who had a sincere question about your sexuality, that was tortuous because you couldn't argue with it. I couldn't argue with the fact that all my friends were dying. I had to hear on T.V. every day, or from the occasional rude stranger, that I deserved it, that this is what you get. It was a hellacious existence.
In your book, you repeat a joke that was circulating at the time. You said, "The hardest part of having AIDS was convincing your parents that you were Haitian."
[Laughs] You know, it's funny because there are people who probably don't get that joke at all anymore. It's so funny, but it's based on the fact that early on, in terms of HIV, the best that the researchers could determine was that AIDS was affecting mostly gay men and Haitians in the United States. That's all they really knew. Remember, we are rewinding an epidemic 25 years back to its beginning -- at that time, that's all the epidemiological data they had: Haitians and gay men.
"Unfortunately there were a lot of gay men who had to come out to their parents and give them two bombshells at once: a) Mom and Dad, I'm gay; b) I've got AIDS. It forced men to come out to their parents who had not planned on doing so, and at the most horrible time. During a time at which being gay was equated to having AIDS."Unfortunately there were a lot of gay men who had to come out to their parents and give them two bombshells at once:
a) Mom and Dad, I'm gay;
b) I've got AIDS.
It forced men to come out to their parents who had not planned on doing so, and at the most horrible time. During a time at which being gay was equated to having AIDS.
Anyway, to know that you had AIDS and were gay was almost certainly going to cause you a lot of problems. So the joke was, yes, the hardest part of having AIDS is convincing your parents you're Haitian. You wanted to avoid giving them both bombshells at once.
Just a reminder to our readers: During that time, Ryan White, who was 13 when he was diagnosed with AIDS -- he had contracted HIV through blood-based products used to treat his hemophilia -- and he had to go to court after he was kicked out of school. It was a pretty bad time just to have anything to do with the disease. Unfortunately, too many parents did not act well when their sons told them they had AIDS.
No, and these are parents that probably weren't going to have a good response to finding out that their son was gay, much less had a deadly disease that had already had enormous stigma. I certainly played host to friends who had lost their apartment because their roommate couldn't handle the fact that they had AIDS. Their roommate didn't want to "catch" it from them.
Remember, these were other gay men. Among us gay men, we were afraid of one another. We were afraid of what we might get from our friends. If you found out you were positive, there were friends -- even gay ones -- who stopped calling, who stopped touching you. There were certainly AIDS patients that were kicked out from apartment situations by their roommate because their roommate didn't want to have to share the same bathroom with them or what have you.
It's important to remember there were very thoughtful, intelligent people on television during that time discussing whether or not we should be quarantined.
Meaning William F. Buckley, Jr., for instance.
I think his suggestion was to tattoo people with HIV.
Yes, and then there was our great senator from North Carolina. Senator Jesse Helms of North Carolina.
Anyway, there were certainly suggestions and debate about whether or not gay men should be quarantined or if people with AIDS in general -- because that basically meant gay men -- should just be put somewhere. Just put them on an island or in a big institution of some kind.
You know what's horrific about it: This is why it's a nightmare. It becomes a nightmare when it starts making sense to you too. When it started making sense to me, when I was like, "I can understand why they would think that way."
With no hope, and no treatment, and HIV spreading like wildfire, and people are dying by the truckload, then quarantining us does make a certain amount of sense. That's when you realize you're in a nightmare.
I want to go back to the predicament a lot of men found themselves in. I don't know if you knew men like this, I know I did. They were 22, they had just finished college, they found out they had HIV, they found out it was pretty advanced and they had to go home because they didn't really have health insurance and they couldn't support themselves as they got sicker. So they had to go home to Mommy and Daddy and they were rejected because their father or someone said, "I'm not going to have a gay boy in my house." Then they basically were put up in somebody's guest room and died and were buried in a pauper's cemetery.
This was not only very common, it certainly happened to me, and probably anybody else who was around at the time. Whoever had a guest room, that guest room during that period -- if you were enlightened enough -- was usually filled by some friend who had no place else to go. In many cases, the rejection of his parents was included in that.
I had a good friend named David who had what he thought was a fairly close relationship with his parents, who were extremely religious. They saw him only once when he was sick. It was when he visited home to talk to them about it. His visit was cut short because he was asked to leave the house.
The last time he spoke to them, their last words to him were, "You're going to hell." They were quite stricken by it. They were sorry about it, but they were convinced he was going to hell, and they told him that, and that was the last conversation he had with his parents. We were all doing the makeshift hospice scene in our own homes when there was no place else for our friends to go.
How did it feel as a young man to be dealing with death? I imagine this was the first time you were dealing with it.
Absolutely! I'll put it this way: it was definitely the last thing I ever thought I would be thinking about at 22 years old, running my 22-year-old ass all around West Hollywood, pretty as a picture, thinking I had my whole life ahead of me -- involved in a lot of the trivial pursuits, as it were, of gay men my age. To suddenly be faced with this was a real punch in the gut. A punch in the gut that felt like the punches just kept coming every day for so many years.
Only in retrospect can I say what a profound experience it was, what a great learning experience it was, how I understand compassion and courage in a way that I never would have. That's all true, but at the time it didn't feel that way! I wasn't walking around every day congratulating myself for being such a courageous guy. I was just trying to make it through the day.
I was afraid, and I would pray to survive. I just wanted to survive, and it's almost like the price I paid for my survival was I had to watch everybody else die. I had to watch all these friends of mine, all of the friends that I lost during that period. This is not to say, of course, that people aren't still dying. In order for me to survive, my prayer was answered, but it meant I had to see them all die. That was a pretty high price to pay.
What kind of affect do you think it's had on you and your life since then -- watching all these people die and being a survivor?
I'm proud of myself for how I was then. I'm proud of myself that I stepped up when I needed to step up. There's no doubt about it. I got involved in AIDS work, I cleaned myself up, I got some meaning to life. Those are all true things. I feel as if I didn't have any choice but to do those things, and so I did it.
But I am proud. I am proud of myself then. On the other hand, it has meant that since then I've continued to search for some sort of meaning in life. Because after you've gone through that sort of experience, that extended experience for nearly a decade, you spend the rest of your life asking yourself, "Well, how do I top that? How do I top that in terms of being the kind of man that I was then?" I learned that I'm capable of showing enormous compassion. In the life I was living then there was incredible meaning in the tragedy.
I've only been able to see a lot of that in retrospect. I think that some of the scars I bear and I'm referring to my present-day drug addiction -- because I've had issues with crystal meth in the last few years -- and I think a lot of that is a little bit of a post-traumatic -- I don't want to make excuses for my drug use -- but a little bit of post-traumatic. I mean what do you do for another act after that? I almost am afraid that the best man that I'll ever be happened 20 years ago. He was there in the 1980s, but I don't know what to do with him now, and that is kind of a haunting feeling.
I guess that's going to be part of your next book.
[Laughs] I suppose so. There are still a lot of thoughts that I have on it.
What do you hope someone in their twenties can take away from this book?
I'm really amazed at the number of e-mails I am getting from young gay men, especially in their twenties or early thirties, who had no idea. They didn't know what we lived through day-to-day. They heard, "Oh, it started off really bad but then it got better." That's pretty much what they've heard. Or maybe they saw "And the Band Played On" on HBO or something. But that's been about it.
I'll engage these guys and say, "Don't you have any older gay friends that have sat you down and told you, 'Let me tell you what it was like.'"
No, no they haven't. These are intelligent, out-of-the-closet younger gay men who just don't know. My message is really for survivors like myself, and that is, "Share your story. Let them know." We vowed we would never let people forget, not only how we stepped up as a community, because we should be so proud of that, and the pride we feel for what we did for other gay men, that pride should go on for generations. You know, people should remember that we really stepped up then.
Also, we shouldn't forget the governmental indifference and the fact that we had to create patient advocacy almost from scratch. Certainly it was there before, but things like accelerated fast track FDA access -- FDA fast track access would not exist today if it were not for AIDS activists. The whole way in which the FDA approves drugs and gets them out to the patient population --
It's mostly for the HIV population. They don't do that as commonly for other drugs.
No, they don't. But they weren't doing it at all until we came along. Because we demanded it. I think that the whole personality of patient advocacy groups everywhere for any disease category had benefited from what happened then, and from people standing up and saying, "Wait a second, you're going to deal with this, and you're going to try to deal with it more quickly."
I think that we have a lot to be proud of, and I would want men my age who remember that, if they are friends or mentors or what have you to men who are younger, let them know what we have to be proud of and what we went through. For younger gay men, I hesitate to have anything to say to them because I don't want to sound like a cranky old man watering the lawn saying, "Hey youngster, remember what we did for you! In my day we didn't have AIDS drugs!"
You know, that's all true. I think that they have the right to live their lives and they're going to have their own challenges. They're going to have their own opportunities to step up and show compassion and empathy for those around them. I had my chance and I performed well, I believe. Hopefully they'll get the same chance. Just not in a situation that is dire.
Thank you so much, Mark, for taking the time to talk about your book. I hear it's available on Amazon.
Thank you very much.
I really appreciate your interest. Thank you so much to The Body for your interest in this.
Mark S. King can be contacted at firstname.lastname@example.org.
To read more about Louise Hay, click here.
To read more histories of the HIV epidemic, click here.
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This article was provided by TheBody.com. It is a part of the publication 15th Conference on Retroviruses and Opportunistic Infections.