HIV+ people who have never taken AIDS drugs, or have stopped taking them.
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Jeff K

Jeff K. lives in San Francisco. He’s been there over twenty years now and doesn’t plan on leaving.

Although Jeff was adopted when he was just three days old, he remembers having a happy childhood, at least for the first eleven years. “I’ve always considered myself quite lucky. My family didn’t have to have me; they wanted to have me.”

Growing up in northern Kentucky with a brother more than a decade his senior, Jeff reminisces about the good times, both at home and in school. His was a middle-class family, living in the center of a thousand-acre park with lots of neat places to play and explore. Although it was not easy getting close to his father, he and his mother had a strong bond and loving relationship; and because of their age difference, his brother watched out for him and took care of him when his father couldn’t.

Jeff got decent grades in grammar school and had a number of good friends to play with in the afternoons. He liked to spend his time creating and building things. “I wasn’t into sports, or fast cars or such.” In fact, life for Jeff couldn’t be better, until…

His brother left for college and his parents starting arguing all the time. Finally, when he was eleven, they divorced, and he and his mother moved away to start over again. Jeff characterizes the next six years as “a really dark period of my life.”

It was also time for puberty, and Jeff found himself attracted to boys, not girls. It made it even worse to be in a new city with new people and none of the old friends he had come to count on. He felt like an outcast. “I didn’t have very many people I could hang out with.”

It soon became tough with his mother as well. “It was not a pretty time in our lives. My mother was recently divorced, and I was discovering my own sexuality. We fought like cats and dogs.”

By the time Jeff was fourteen, he had a job as a busboy in a local restaurant in the evenings, and started visiting the gay bars when he got off work. As his grades began to slip at school, the teachers and advisors were very sympathetic; after all, they rationalized, he had to work at night to help his mother make ends meet. The truth was that Jeff would go to school at eight in the morning, go to work at six in the evening, go to the bars at midnight, and drink and party until dawn. “When I started drinking, I didn’t just drink to feel good. I got toasted. I got plastered, all the time. I turned out to be a blackout drinker for over twenty years.”

Around this same time he also started using drugs, lots of different drugs: LSD, Seconal, marijuana. It was the late ‘60s, and there were plenty of drugs available, even in conservative Kentucky.

And he started taking lovers, many of them. “At the time, drinking and doing drugs was a way for me to go out and meet other people like me. If you were young and gay in northern Kentucky, you’d go to bars. That was about all there was to do.”

School, work, drink and party. It went on like that for more than three years.

Finally, when he was seventeen, Jeff graduated from high school – just barely. He took off for San Francisco with his best friend, “for two reasons. One, obviously, it was the place to be if you were gay. You could really feel at home there. Two, I wanted to stay in the restaurant business, and in San Francisco you could get paid a lot more than anywhere else, since it was unionized.”

It was like night and day. He left the black hole of his life in Kentucky and found exactly what he was looking for in San Francisco: love, peace, fun, and friends. It was 1974, and there was a lot going on in the Bay area, even after the hippie movement had peaked in Haight-Ashbury.

In addition to working at a restaurant, Jeff took a second job as the desk clerk at the gay hotel where he lived – $90 a month for a single room, and all the company you wanted right in the same building. He made a lot of friends, had a lot of lovers, and went to a lot of gay bars. “Whatever you heard about San Francisco at that time was true, and then some.”

Time passed, and Jeff was happy with the way his life was going. In the early days, he would spend six months in San Francisco, and then travel the other six months of the year. Jeff loved to travel, and he would ride a Greyhound bus for days to visit his mother and brother in Florida. When Jeff had originally announced to his mother that he was gay, she tried taking him to doctors and counselors to “cure” him; and there was even talk about sending him to military school. But his brother had always been understanding and supportive, and his mother eventually came around as well. So he was encouraged to bring gay friends to the house when he visited in Florida and felt no pressure or rejection. But still, Jeff’s heart was in San Francisco, and he soon was staying there year-round.

He had one three-year committed relationship, and then another one that lasted six years. But all the time, he kept drinking and doing drugs, although the drugs soon became less important than the alcohol. “If you were gay, you spent the nights at the gay bars. That’s just what you did. And when you go to a bar, you drink. So I was always drunk, and I stayed that way for fifteen years.”

In the early 1980s, there were people in his gay community who were starting to die from a new disease called AIDS. Very early on, Jeff lost his cousin, Tommy, who was also gay and living in Florida. Although they weren’t close, Jeff remembers Tommy telling him about living as the first AIDS case in Boca Raton. “When he would go over to visit other people, they made it clear they didn’t want him in the house. They threw away the dishes and plates and such after he left. When he got sick with pneumocystis pneumonia, they didn’t even want him in the hospital. They demanded $10,000 up front before he would be allowed to step foot in the door. His mother had to fly to Florida and take him back to Cincinnati just to get him medical care.”

But the big blow came in 1991 when Jeff lost his long-term relationship as well as his closest and dearest friend to AIDS, and it was more than he could take. He hit the bottle twice as hard and started doing a lot more drugs, especially shooting speed. “Then the drinking started interfering with my shooting speed, so I let the drinking go and focused on the speed exclusively. And this is the way it was for the next few years.” By the end of that time, Jeff had lost his job, his friends, and everything he owned. He was living outside on a park bench, blasted most of the time. He began to feel physically ill and finally went to a local free clinic. “All my friends were dying of AIDS, and I figured I probably had AIDS too, and decided I should get tested.”

“I’ll never forget it. When I went to get my test results, it was not a doctor, but a very nice nurse named Marilyn who talked with me for a few minutes before telling me the results, kind of ‘testing the waters’ to see what my reaction might be to different scenarios. You know, like, ‘What would you do if the test was negative?’ Then, ‘What would you do if the test was positive?’ I guess when she was convinced I was not going to freak out, she opened the envelope. Yep, it was an envelope – a small white envelope attached to my file. She opened it and just said, ‘It’s positive.’ Neither one of us said a word for a long time; the silence was deafening. Finally she noticed the tears running down my cheeks and asked me if I was okay. I said yes, and that I needed to go, and that I would call for a follow-up doctor’s appointment. As I look back on it now, I remember that the envelope reminded me of a sweepstakes. It was like, ‘You’re the winner, and the prize is HIV! Congratulations! You’re going to die of AIDS!’”

That was all that Jeff needed to hear. He knew that if he stayed living outside, exposed to the elements, he would indeed die a horrible death. He also knew that his drinking and drugging would have to stop. He checked himself into a residential treatment program, and he’s been clean and sober ever since. “I originally went into recovery, not for the recovery, but for a place to stay. I didn’t want to get sick living outside. I think that if I had stayed where I was, living in the park, I would have given in to the elements, they would have put me on HIV medications, and I would have died for sure.”

After finding out he was HIV-Positive, Jeff gave himself ten years to live. By then, that was the accepted “latency period” for HIV turning into AIDS, “I told myself that I needed to have everything finished and buttoned up within 10 years; and to do that, I needed to be clean and sober.”

But he didn’t get a lot of support from the recovery center staff. “They didn’t give me much of a chance. Most people who are told they are HIV-Positive don’t stay clean and sober. They figure they’re going to die anyway, so what’s the point? Why bother?”

Jeff then began working with other people in the residential recovery center who were HIV-Positive and had AIDS. He ended up spending nine years as an AIDS and HIV counselor, and now works as a social worker for the homeless.

“I was counseling people who had AIDS and were taking AZT. We all believed that HIV equaled AIDS, and AIDS equaled death. I watched them take AZT every day and get sicker. Then I would watch them die. I remember a friend of mine who I lived with in the residential recovery center who was taking AZT, and he was really sick. I talked to him every day, and he died in about eight months.”

Jeff lost another close friend to AZT/AIDS in 1995, and a third in 1996. “It was really hard to watch your friends who were vibrant young men just shrivel up, turn into old men, and die right before your eyes. In fact, we’ve lost an entire generation here in San Francisco. There are men ten years younger than I, and ten years older than I, but there’s hardly anybody my age that’s still alive.”

“My best friend was a completely healthy human being – playful, and smart. But he started to get dementia after he began taking medications for his HIV. The more he got dementia, the more medications he took, and the further away he got. Finally, he was physically here, but not mentally. He would just be sitting at home, staring off into space. I can remember one day going over to his house. He was sitting there in front of me – the lights were on, but nobody was home. All of a sudden he got as clear as I had ever seen him, and he said, ‘You know, Jeff, you’re my best friend, and you’ve been like a brother to me. I’ll be waiting for you.’ So the good news is that I have somebody waiting for me.” Jeff laughs to ease the pain. “Maybe he’s putting up a pair of curtains or something while he’s waiting.”

“Everybody I knew that got sick from AIDS were heavy partiers – drinking and very much into the drug scene. And everybody I have known that has died of AIDS has been on AIDS medications. Back then it wasn’t the ‘nice’ HIV medications like protease inhibitors; it was the massive doses of AZT that would make them sick. I remember it so well how they would be vomiting and so deathly sick from the medication they were taking that they would tell me, ‘I’d rather die of AIDS than take this medication.’ But they kept doing it anyway. There was a lot of pressure to keep taking AZT.”

“As I think back I can say for sure that all my friends that died from AIDS did poppers [amyl nitrite]. But not everyone that I know did poppers died from AIDS. I did poppers, but not daily – just once in a while, usually during sex. I remember poppers always gave me headaches. Many times we would get bumped and dump some of the bottle down our nose. This was a very common occurrence. They even came out with small silver bullet inhalers so that you couldn’t spill it. If you spilled it on your skin, it would burn.”

Why didn’t Jeff take HIV medications? You might say it was pure luck. Jeff was diagnosed with Hepatitis C in the early 1980’s, and strangely enough, it is the Hepatitis that probably saved Jeff’s life.

“My doctor knew that AZT – the drug of choice to fight AIDS in 1995 – would damage my liver, and he didn’t want to give me AZT while I was fighting Hepatitis at the same time. He said, ‘Let’s wait until we can get your Hepatitis under control before we treat you for AIDS.’ So I never took AZT or any other medications for AIDS. No protease inhibitors, no cocktails, no nothing. And after watching my friends in the residential treatment center all die from taking AZT, I swore I never would.”

On the surface it may seem like Jeff’s HIV-Positive diagnosis turned his life around, for the better; and to a certain extent, that’s true. There’s no question that it woke him up and forced him to change his behavior and his lifestyle, served as the catalyst for him to go clean and sober, and focused his energies and talents to start getting things done in his life.

But there’s definitely a dark side as well. As Jeff put it, “When you’re told you’re HIV-Positive, you’re handed the complete package. It affects every aspect of your life.”

For the first year after his positive blood tests, Jeff was so depressed he had to start taking antidepressant drugs, like Zoloft. When the side-effects of the drugs got to be intolerable – dry mouth, dizziness, nausea, and general malaise – he had to quit them as well.

For Jeff, however, the hardest thing about being diagnosed as HIV-Positive is the fear. “It’s overwhelming at first. You’re always wondering, if you’re not feeling well, is this going to be it? If you get a blemish or a mark on you, you wonder if you’re going to die from that. You’re afraid of the least little thing, and worried that ‘today might be the day.’”

“It’s impossible to plan anything in your life when you’re told you’re going to die. What are you going to plan for? How can you make a commitment to other people for any time in the future? If I want to change jobs, I have to very careful. What would happen if they find out I have HIV? How tolerant will they be if I get sick? Would I lose my job? Would I lose my health insurance? Are they going to pass me over for a promotion because they’re afraid I’ll eventually get sick and not be able to work?”

“But my greatest fear is the fear of being shunned. That’s the only word that I think really describes what it’s like for someone who is HIV-Positive. It’s really tough to watch people backing away from you, looking at you like you’re some kind of freak with an extra leg or two heads. When people know you’re sick, they don’t want to talk you or touch you. I remember one Gay Day parade when I saw a guy who had Kaposi’s Sarcoma, and there were very visible lesions all over his body. He was carrying a sign that said, ‘Please Hug Me!’ People would run from you. They wouldn’t even talk to you. It’s changed a little bit, at least in San Francisco, but I can still remember those early days, right after I was diagnosed Positive; it’s burned in my mind. And even today, although we like to think we’re more enlightened and tolerant and it’s not politically correct, if people know you have HIV, they still treat you differently.”

Once again Jeff talks about how lucky he is to live in San Francisco, where virtually everybody knows someone with HIV. “I hate to think about how people who are HIV-Positive are treated outside of San Francisco. And even as good as it is in San Francisco, I got a card a few years ago from one of my co-workers that said, ‘You’d never know you have HIV, you act so normal!’

Jeff also talks about the fact that if you’re HIV-Positive, your name is on record with the government, as if having HIV made you the equivalent of a registered sex offender. “The recent court cases in some states that found someone with HIV guilty because they didn’t tell a partner they were Positive, how far will that go? Will we all eventually have to wear signs around our necks that say, ‘I have HIV’, like a scarlet letter?”

“And I can’t travel. First of all, I wouldn’t dream of living anywhere else other than San Francisco. But I especially can’t leave the country. What would happen if I got sick while I was in another country? Do I have to disclose my HIV if I go into another country? Would they let me in if they found out? Would they kick me out if I got sick while I was there? So I just don’t travel, and I miss it.”

“It’s the same thing with relationships. What are you going to tell a prospective partner? And when do you tell them? Do you just walk up to them, tell them you think they’re hot, and by the way, I have HIV! Do you wait and tell them? What do you do? This is an ongoing dilemma for HIV-Positive people. I solved it by trying not to go out with people unless I know they’re HIV positive, and everybody knows what’s up from the start. I don’t make a big deal of it anymore. If the attraction is there, we’ll see. But more than anything, I try to avoid intimate relationships now.”

Frankly, Jeff hasn’t had a long-term relationship since 1991, and virtually no sex life since being diagnosed as HIV-Positive in 1995. He admits that there are plenty of opportunities out there, other HIV-Positives with whom he could hook up. But there are other problems….

“I got mad at my friends who died of AIDS, because they left me. Why should I get in another relationship, especially with an HIV-Positive, just so they can leave me, too?”

“And I have another problem. The people I hang out with the most, who I would want to date, are people in recovery, and they’re all HIV-Negative, since people who are HIV-Positive usually don’t stay clean and sober.”

Jeff doesn’t remember what blood tests he took that resulted in his HIV-Positive diagnosis. He also doesn’t remember having a blood test prior to 1995, so there’s no way to know whether Jeff was born HIV-Positive; and since he’s adopted with no knowledge of his real birth parents, there’s no way to find out if they are or were HIV-Positive as well.

And strangely enough, Jeff has never taken another blood test since 1995 that he’s aware of. He gets periodic Viral Load tests, which have all come back normal from the very beginning; but he has no clue whether he still reads Positive on an Elisa or Western Blot, or even if he does, whether it’s a false positive reaction. “I’ve got so many things that have been proven to cause false positives on an HIV blood test. I’ve got Hepatitis C. I’ve been vaccinated for Hepatitis A and B. I test positive for Tuberculosis. I’ve also been vaccinated for PCP. How do I really know that I’m HIV-Positive, or whether I’m just testing positive to other things? Besides, they’re not testing me for the HIV virus; they’re testing me for HIV antibodies. Well, considering the fact that I’ve worked most of my life with drug addicts and homeless people, I probably have antibodies to everything in the world, and then some.”

Last year Jeff passed his ten-year goal. “I don’t understand,” he says. “Supposedly, I’ve got HIV, but I’m not sick. I’m healthier today than almost any time in my life. Why? Why am I still alive?” He has only one answer. “I’ve never taken the HIV medications.”

Despite everything Jeff now knows about AIDS and HIV, he still lives with a death sentence every day. It’s deeply engrained in his psyche, affecting every thought and every move, as if tomorrow he could come down with AIDS and die. After all, that’s what he’s been told – what we’ve all been told – for more than twenty years.

“The thing that scares me the most right now is the switch in the medical community from finding a cure for AIDS, to making it a ‘manageable’ disease. After all my years working with AIDS and HIV, I know that there is big, BIG money to be made in this field today. You don’t hear, ‘we’re going to find a cure’ anymore. The only thing you hear is that ‘it’s a manageable disease.’ That tells me they don’t want to find a cure. They don’t want to find what’s really going on, because it’ll take the money away. It’s really big business these days. You’d think, after twenty-some years and billions of dollars of research, they would have found a cure, or at least a vaccine. I’ve come to believe that the pharmaceutical companies are making so much money that they just don’t want a cure any more. I don’t know too many people who would be anxious to do anything that would take away their own livelihood.”

“I have lived through the darkest hours of AIDS here in San Francisco. In fact, we’ve lost almost an entire generation in this city; there are very few men my age left. I watched as each and every one of my closest friends died of the disease. There is not one day or moment that goes by that I do not miss them terribly. I always felt in my heart that they were knowingly killed by someone, some thing or some group of people. I also know in my heart that one day a bright light will shine on this issue, and the guilty people will try to scatter like cockroaches when a light is turned on. I made a vow to my dead friends over ten years ago to see this thing through and bring their murderers out in the open and let the chips fall where they may, and I will not rest until I find out who killed them.”

Jeff K.

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