HIV+ people who have never taken AIDS drugs, or have stopped taking them.
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Mark C

Mark C. lives in California, but he was born, raised and educated as an only child on the other side of the Atlantic. His younger years were pretty normal. He got better than average grades in school, had a happy home life, and spent most of his free time watching old movies on TV or taking the train to the theater in the big city close by. He loved the theater, and he would long to go away and live “somewhere more exciting.”

Mark didn’t go to the state school in the town where he lived. Instead he rode the bus about fifteen miles each way every day. This meant that virtually none of the kids his age where he lived were his classmates or playmates, resulting in his being alone most of the time after school. The friends he did have weren’t into sports as much as the music and entertainment scene.

Mark didn’t admit his homosexuality to himself until he was nineteen. “In retrospect,” he says, “I should have known it when I was five and really into Bette Davis movies. But growing up, I didn’t like the way I looked, I didn’t like my voice, I didn’t like all kinds of things about myself. Then one day I was thinking, ‘Don’t tell me I’m gay, too.’ Back then there was no Will and Grace, no Rosie O’Donnell, no Ellen, and even Boy George wasn’t out. To be gay was still a stigma then.”

Although the majority of his best male friends were gay also, they didn’t talk about it, and Mark only admitted his discovery to a few people at different times. He wouldn’t tell his parents for another four years.

Upon graduation from high school, Mark went to University in the big city. The higher education system is different overseas, and when Mark couldn’t pass one of the eight courses he had been taking in his major for almost two years, instead of switching majors or making it up in another area, he was simply not allowed to return to school. So he went to work at a local theater doing public relations.

Mark had had a few girlfriends in school that never seemed to work out very well, but he was “too scared and too shy and too naive” to do anything much with other boys. And he was much too shy and scared to go a gay bar. But the theater where he worked would host a number of touring groups who would stay and perform for a week or so at a time, and Mark had the chance over the next few years to become “close friends” with a couple of the actors. “In Los Angeles, all the actors pretend to be straight, but in the theater world, the majority are gay, especially on tour.”

“There were a couple of relationships when I thought I was in love; and I only had eyes for one person at a time, even if we only saw each other only infrequently. I was a one-man man, sort of innocent and idealistic and looking for Mr. Right. It was all about finding that one true love and living happily ever after, just like in the movies.” He says he didn’t really have much of a sex life during that time and regrets that he “missed out on a lot” in those years.

One day in 1990, when he was twenty-two, Mark went on vacation to New York. He fell in love – not with a man, but with the city. “I wanted my own place, I wanted to work for a Broadway theater, and I wanted to live in this exciting new world.” It was also the first time Mark went to a gay bar where he could feel really comfortable and happy. “You could actually see through the windows! You could walk past bars in Greenwich Village and look through windows that weren’t painted black like I was used to; and you could see people having a good time inside, standing around a piano, singing show tunes; and I thought, ‘WOW!’”

He moved to New York within six months, sharing an apartment, living near Bloomingdale’s. While he tried to get the kind of job he wanted, he sold T-shirts and other things off of vendor carts around the World Trade Center. And he started going to the gay bars a lot, especially The Monster in Greenwich Village. Within four months Mark was involved in a serious and monogamous relationship.

They soon moved in together; and for the next few years, Mark couldn’t have been happier. It was also when Mark finally told his parents he was gay. “When they came to visit, I wanted them to know what he meant to me. So I had to tell them.”

Mark also finally got a job as a theater publicist. “I had the career that I wanted, I was living in a very exciting city, and I had found the love of my life. Of course I was happy.”

But like any relationship, regardless of gender, Mark and his partner had some problems. One of those problems was age and experience. Mark was eight years younger than his partner, and had not had very many sexual exploits prior to settling down in this relationship. So perhaps the toughest thing to overcome was the difference in libido. It resulted in a lot of upset, and finally, after five years, they split up.

Mark was twenty-seven, single, good-looking, and free for the first time in his life. He decided to make up for all the fun he had missed earlier. “I was looking forward to sowing some wild oats, finally. I didn’t realize at the time that love in the future would be so elusive.”

He started visiting the gay bars and gay baths, drinking a lot, and having a lot of lovers. Within a year or so, he would also begin experimenting with drugs. “People mostly did cocaine in New York at that time…oh, and K.” (“K” is short for Ketamine, an animal tranquilizer that acts like a psychedelic in humans, similar to Angel Dust or PCP.) It was also the first time he ever did poppers.

“I remember reading in the gay magazines how people used to think that poppers caused Kaposi’s Sarcoma, and how that turned out not to be true – that poppers were okay, and that they didn’t cause KS. At least, that’s what we were being told.”

After two years of this, Mark paid a visit to California on vacation. “I had such a peaceful, healthy time…I liked the way of life there, compared to how tough it was in New York. I decided to move there and clean up my act.”

It was quite a change from New York, where, as a theater publicist, Mark knew hundreds of people and went to cocktail parties and opening nights. He had built a successful business, getting referrals from everywhere, and even though he worked for a bigger company, Mark had his own private clients and was well respected. But in California, Mark knew no one, had no friends, no clients, no career.

“After a couple weeks, I returned to my old ways. But they didn’t have cocaine there; they had this other stuff, called crystal meth, that was cheaper. I had no job and lots of time on my hands, and soon I was doing crystal twice a week. My life went into a downward spiral.”

“One night I did too much crystal, and I thought I was having a heart attack. So I called an ambulance and went to the hospital. The next day I enrolled in a rehab program on my own volition. It was one of those outpatient programs where you go three times a week, they test you, and you get counseling. If I gave a clean urine sample, they would give me money – hundreds of dollars over the course of the treatment. And that worked for about five months.”

But Mark relapsed soon after leaving that program, and with no real follow-up, he went in and out of his drinking and drugging for the next few years. A couple years ago, a good friend got him into Alcoholics Anonymous, and at the time of this interview, Mark was clean and sober and about to celebrate an AA birthday.

There is another date that Mark remembers well. “I had a rash and a fever, and I felt sick. I was scared that it was a seroconversion and decided I should take an HIV test. First I went to the Free Clinic, and they told me they thought I had HIV, based solely on my symptoms. They didn’t give me a test or anything; just the death sentence, and it scared me. So I went to the Gay and Lesbian Center and took an HIV test. I was Negative.”

Mark had had another HIV test a long time prior in Europe, before he moved to New York. “This was before I had really done anything sexual. I don’t even remember whether I had ever done oral sex. But this was the late 1980’s, and it was such a scary time, almost thinking like you’re going to catch something if you hold somebody’s hand. It was an ordeal just taking the blood test, and it had to be secret because my parents couldn’t know. But the test came back negative.”

“I had friends in the theater who died from AIDS, and it was a terrifying thing, but they were all doing things I had never done, in terms of sex, and drugs, so I never thought much about it. My five-year partner was also HIV-Negative, and since we were monogamous with each other, and neither of us had much sexual experience prior to getting together, it just wasn’t something we talked about or were concerned about that much.”

But now it is December 16, 1998, and Mark’s life will be changed forever. He went back to the Gay and Lesbian Center for a routine follow-up, and they gave him a saliva test. Just one saliva test. And then they pronounced him HIV-Positive.

“In between the negative test a couple months earlier and this positive test at the Center, I had vaccinations for both Hepatitis A and B. They didn’t tell me they could cause a false positive. They just told me I was going to die.”

They did a viral load on Mark, which was up. His T-cell count was down. They put him on “a bunch of medications.” They asked him whether he would take the meds, and he said, “’Yes, of course,’ because I was terrified.”

“I started taking the medications in January [1999]. I had diarrhea every day. It was horrible. But my viral load went down and my T-cell count went up, and I thought, ‘Thank God.’ When you first start taking the HIV medications and you see your viral load go down and your T-cells go up, you think something good is happening. They also don’t tell you that that’s a normal reaction as your body tries to fight the medications themselves.”

They wanted to give Mark a paper that he could use to get free food, but you had to have AIDS in order to qualify. He didn’t. He wasn’t sick. He had no symptoms of AIDS, only the reaction to the HIV medications. But then he mentioned the daily diarrhea from the pills, and they said, “Great! That’ll do,” and diagnosed him with AIDS.

Six months later, when Mark needed another paper verifying his status for some other government benefit, they checked “Option #6. Cannot Work Fulltime,” and sent him on his way. “I thought, what the hell does this guy know? I just walked in; he didn’t ask me any questions; he just checked #6. So now my AIDS had progressed from a #1 category to a #6. Then he asked me if I wanted to go on disability. ‘We can arrange that,’ he said. They just offered it to me without my asking.”

“So seven years ago I could have given up and gone on disability and had a placard for my car and got money from the government every month. But why would I want to go on disability? There was nothing wrong with me. I had a job. I was working. And today I’m as healthy as I can be!”

“There was another time I went to the Clinic because I had eczema on one foot. I just wanted another tube of the prescription cream that always cleared it up right away. But they were convinced it was the start of Kaposi’s Sarcoma. ‘It starts on the feet, you know,’ they told me. I explained that I didn’t think it was KS, because I also had it a few years earlier and the cream made it go away. They finally gave in and gave me the cream, and of course the eczema went away again. But they always want to assume the worst – they want to treat HIV and AIDS rather than treating the symptom right in front of them.”

Then Mark met Larry. Larry was HIV-Positive as well, but he wasn’t taking the meds. “I said, ‘What do you mean?! You’re going to kill yourself if you don’t! You have to take them or you’re going to die!’ I was so upset that he wasn’t taking his pills. He started to explain everything to me, and I thought he was crazy. We had a big fight over it all, of course.”

Larry later gave Mark a copy of Christine Maggiore’s book, What If Everything You Thought You Knew About AIDS Was Wrong? “I stayed up until three o’clock in the morning reading it, and I never took my 10:30 pills that night. When I was finished reading, I never took them again, ever. And I thought, ‘Thank God for Larry’ for giving me this information, because I had no idea until he told me. Not a clue. I believed everything they told me – the media and the doctors. The doctors always used terms like, ‘You know it will progress.”

“I was so shocked when I looked at the drugs I was taking and one of them was AZT under a different name! I didn’t know it was AZT. No one ever told me I was taking AZT, and we all knew what AZT had done to everybody in the 1980’s. Of course, it was a different dosage, but still….I started asking those doctors a lot of questions, and they got really mad at me. They hated me there.”

Mark decided to take another HIV test. “I did it anonymously, not giving any information about my life, because if you sound like you’re at risk, you’re more likely to get a positive result. The test came back positive again, but when I told the guy that I already knew it, he was furious at me for taking the test a second time. I told him that if he was going to tell me that I had this terminal illness, I had a right to another test to confirm that diagnosis. He was so angry at me for wasting his time, and I was horrified. The way they treat us is unbelievable.”

“Sometimes I think this whole thing is just a way to get us down – ‘us’ meaning gay men – just a way to make everyone scared and feeling like they need to be protected from our way of having sex, despite the fact that people have been doing it for thousands of years. Now all of a sudden it’s unsafe and we need protection from it.”

How did his HIV-Positive diagnosis affect Mark’s life?

“On the way back from being diagnosed as HIV-Positive, I went and bought a Christmas tree and decorations, thinking that I might not have another Christmas to celebrate. I had to buy a new bed a couple months later, and I spent more money than I normally would to get a comfortable one, because I thought I might be spending a lot of time in that bed as I died, and it probably was the last bed I would ever own. I would cry a lot, and think about the fact that my parents gave me life and gave me this body, and I fucked it up by actions that I could have avoided. More than anything, I was scared. Scared of death. People shrivel up and look like french fries and they have tubes coming out all over their bodies. Death from AIDS is horrifying.”

Has his Positive status affected his relationships?

“Not when I first started taking the HIV medications, no. At that time we all believed that if one took the pills, one would be okay. Everyone was being told that it’s not a death sentence any more as long as you take the pills. That’s pretty good advertising for the drug companies, isn’t it? So it probably wasn’t as scary as it would have been ten years earlier, but still… was pretty dreadful.”

“The biggest problem is, finding someone to date or marry. There are basically two types of gay men: HIV-Positives and HIV-Negatives. Most of the Positives are taking the medications; they are killing themselves; they have lipodystrophy – sunken cheeks and humps on their back or neck; they’re sick. It really makes me sad to be around them.”

“Then there are the Negatives, who generally don’t want to date me or be involved with someone who is ‘tainted.’”

“Let me tell you an incident that happened to me about three years ago. I was in a drugstore and this guy walked up and gave me his card. He was a match-maker for gay men, and he handed me a coupon. So I called him up, and he said he wanted to give me a free membership to his matchmaking service. I went over to his place and filled out all the forms and he took some pictures of me, and then asked me if he could use me in his advertising in the gay magazines. I was very flattered. He obviously thought I would draw people to his service.”

“Then he gave me a book of men who were looking for other men to date, and told me to go through it and pick out ones that I liked and he would tell me about them. So I found the first one and said, ‘What about this guy?’ He goes through the list of his likes and dislikes, and just casually reads a line that said, ‘HIV-Negative, You Be, Too.’ I had to say, ‘Stop…wait.’ It suddenly occurred to me that maybe I needed to talk about this. As soon as I told him I was HIV-Positive, everything changed. He no longer wanted to put my picture in his ads; I wasn’t his poster boy any more. I went home and cried.”

“And as Jeff said in his interview, now that I’m clean and sober, there are even less people I can relate to or want to spend time with, because most HIV-Positives don’t go clean and sober. AIDS can be a great excuse – if you going to die anyway, why not stay happy on crystal meth? Obviously, being HIV-Positive can be very depressing, and when you’re depressed and a drug addict, all you want is the crystal.”

“I went out recently with an HIV-Positive who was taking the medications, and he was good-looking, tall and skinny, except for the lipodystrophy that was beginning to show on his face and belly. I just didn’t want to be around it. There’s another HIV-Positive I met when I first moved to California who was a really cute guy. Today, after taking the medications, he’s horrifying to look at, with a little face, a huge neck, and a bloated stomach .”

“There’s an ad you see everywhere these days with the picture of gay men with a sunken face and big neck and swollen stomach, clearly in advanced lipodystrophy. The caption reads, ‘HIV – Not Fabulous.’ It makes me sick, and angry enough that I had to write to the advertising agency about their client’s manipulative tactics. It isn’t the HIV that causes lipodystrophy, as they are implying. It’s the HIV medications, for which lipodystrophy is a known side effect. The logic is all wrong. There are people who take aspirin because they have a headache, and they get bleeding ulcers in their stomach as a side effect of the aspirin. But nobody in their right mind would try to say that the headaches were causing the bleeding ulcers! It’s insane.”

Does Mark have hope for the future?

“I’m hopeful this interview might help more HIV-Positives do their own research about the HIV medications and make an informed choice whether to take the drugs or not. I really want to see more people stop killing themselves. I’m also hopeful it might help me find a husband who isn’t afraid of me – either an HIV-Positive who is not taking the drugs or an HIV-Negative who ‘gets it.’ But that’s not so easy.”

Mark C.

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