HIV+ people who have never taken AIDS drugs, or have stopped taking them.
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Kay R

Kay was born and raised in California in a normal family with normal parents and a normal brother. She went to a normal school and did all the normal things teenagers do. But Kay had a very independent nature, and when school was over in her early twenties, she took off for New York, by herself, with $200 in her pocket.

“It was the perfect time to do it. I was young and single and just wanted to live on the east coast. I worked a bunch of odd jobs, took in the culture and the changing seasons, and it was a really good experience. I learned a lot, especially how to live in a big city like that.”

One of the people Kay worked with introduced her to her brother, George, and after dating and courting, they got married. For a time they stayed in New York and traveled a bit, and then moved to Hawaii.

“I loved Hawaii, and George was from the Philippines; so it seemed to be the prefect place to live, kind of half-way between both families.”

It was there Kay had her first daughter, Susie. But when the Gulf War broke out in 1991, the economy in Hawaii, based almost solely on tourism, took a nose dive. Plus, Kay missed her family in California, especially with a new daughter and no one to help take care of the toddler.

At that point, things were going pretty well, except that George had started having migraines. When they lived in New York, he had a lot of allergies – diary products, cats, certain pollens – but he didn’t really pay much attention to them or let them run or ruin his life. But when they moved to the Big Island of Hawaii, things changed. There’s a volcano there, and something called “vog.” Vog is a combination of the emissions from the volcano with manmade emissions, creating air that looks like smog, but it’s a lot denser and heavier and metallic in nature.

“People who live in smog can see it, but you can’t necessarily taste it in your mouth. With vog, you can taste the sulfur, and a lot of people would have respiratory reactions. I didn’t feel all that good breathing the vog myself, but George started having these debilitating headaches. When the prevailing winds would change, he would get pretty sick.”

Add that to everything else, and they decided to leave Hawaii and move back to California.

The change of environment helped, but George’s headaches continued; not as severe or as frequent, but they were still there. After securing a steady job with health insurance benefits, he agreed to see a doctor. During the course of doing a complete physical examination, the doctor ordered an HIV blood test. It came back positive.

“It was very traumatic for both him and me. Basically, they started telling us to get our affairs in order, that he was going to die and we should start preparing for that. But the worst thing about being in a monogamous marriage and having your husband test positive is that the people giving you the post-test counseling start putting doubts in your head. ‘You don’t know that he’s really been faithful to you,” and ‘How do you know for sure who he’s been with?’”

George swore he had been faithful. Unfortunately, he had not taken an HIV test prior to this and there was no way to know whether he had been HIV positive since birth.

But it didn’t take long for things to go from bad to worse. Kay took an HIV test as well a few days later, and she, too, came back Positive. But her T-cell count was normal.

“I’m the healthiest person you ever met. I don’t get cavities, I don’t wear glasses, and I never get sick. I was raised that if you had a headache or got sick, you rest, drink a lot of water, and eat healthy. You get a fever for a reason, you know. You don’t just try to suppress it. The doctor I went to my entire life told me that if you try to suppress these symptoms, you can drive them down even deeper into your body and perhaps create more serious problems. If I ever felt like I was getting a cold, I’d take some Vitamin C and I’d be fine.”

So why did she test HIV-Positive?

“From all the studies I’ve read, I can’t believe I got it from my husband. There’s really no evidence to prove that HIV is transmitted through sexual contact. In fact, in the longest and largest study of its kind, the exact opposite was true. None of the HIV-Negatives with a spouse who was Positive became HIV-Positive themselves, even after years of having sex.”

“But we traveled a lot in Asia; I did outreach work when I was down in Baja, and you’re bound to pick up a lot of things in those environments. There’s no way to tell what my HIV test reacted with to come up positive. Of course, I had a prior pregnancy, but I wasn’t promiscuous and I didn’t do drugs. So I certainly wasn’t in any high-risk group. It never made sense to me.”

Make sense or not, it still had a huge impact.

“When you’re dealing with a diagnosis that is essentially a death sentence, you begin to question everything – especially with a toddler, because you have to face the reality that you’re never going to see them grow up. How will they survive without you? That alone, I’m sure, is enough to kill people. We had suicides when I was in college – people who simply weren’t happy with their grades. With this, I can imagine someone deciding that it would be easier to end it now rather than dying from a horrible, prolonged disease.”

But Kay was more upset for George than for herself. He had grown up in a medical family and relied more on the opinions of doctors and the standard medical protocol. His T-cell count was below 200 at that time, and of course, they wanted to put him on AZT and other drugs right away. They even gave him a brochure telling him that sugar was his best friend, along with milkshakes and French fries.

“I’m sure it was because all the drugs they wanted him to take would start wasting away his body, and they wanted him to try to keep his weight up by consuming massive quantities of sugar. I tried to tell him that if he wanted to maintain his health, eating lots of sugar or fries wasn’t the best way to do it.”

No one questioned his low T-cell count or its relationship to his allergies.

Kay wasn’t convinced, however, that he needed to take the medications. “Let’s just wait and see,” she said. “You have headaches, that’s all; and none of the things that you’re supposed to have if you have AIDS.” She was aware that there were so many wrong diagnoses and wrong prescriptions happening in the medical profession that she wanted to take it slowly. She suggested other natural ways to bolster his immune system and build up his T-cell count.

Unfortunately, this issue would be the final nail in the coffin of their relationship. George could only see the negative side. “He even looked for things to go wrong,” Kay remembers. “At that time, if you watched the news or read the papers, you would be bombarded with one horrible thing after another about AIDS. My husband believed them all. If you give yourself a negative affirmation like that every day, eventually it’s going to come true. It was sad to see how bleak and hopeless he was.”

She found the same attitude everywhere she looked. When they would go to the county health department for regular appointments, they would sit in the waiting room for hours “surrounded by all these people who were wasting away from the HIV drugs they were taking. I finally said, ‘We’re not going back there – ever.’ It just wasn’t the way I wanted to spend my time. Besides, a lot of them also had TB, and I didn’t think it was good to stay in that environment very long.”

She tried taking George to alternative medical doctors with holistic practices, and each time they would get words of encouragement and hope. After all, he wasn’t a member of any high-risk group, either.

There was their daughter, Susie, to consider as well. “I wanted to focus on helping her live, not helping him die. I wanted her to be happy, and I didn’t think it was fair to her to keep living in a dark and depressed environment.”

But George’s family, coming from their strong medical background, kept insisting that he follow the standard protocol to the letter. Finally, Kay gave up. “If you think they can take better care of you, then you should move back home to New York, because I don’t agree with what they’re telling you, and I’m not going to help you follow their orders.”

So George went back to New York in 1994, and went on the medical protocol. He died in 1998 of a brain tumor.

Kay wasn’t involved with her husband’s medical decisions after he left, and she has never seen his death certificate; so she doesn’t know whether it says he died of AIDS, or “complications from AIDS,” as a result of the tumor. “His family certainly acted like that’s what they believed.”

After his death, the family would check in on Kay every once in a while, expecting her to die soon as well. “They were giving me all kinds of grief. But after all these years of being HIV-Positive, I’m as healthy as ever. So when they look at me now, they think, ‘What if we were wrong?’”

“It’s not like George could have lived much longer, because of the brain tumor. But at least he could have had a better quality of life in the years he had left if he had not gone on the HIV drugs. But who knows? Who knows how all that emotional and psychological trauma from the HIV-Positive diagnosis played into his health as well.”

“In my heart of hearts, I feel like I gave him a couple more years of life, since by the time he went on the medical protocol, the dosages of AZT were being reduced so they weren’t so lethal so fast.”

The doctors never pressured Kay into taking any of the HIV medications, because her T-cell count and viral load results were always in the normal range.

Kay and her husband didn’t just suffer the individual pain and trauma of their HIV-Positive diagnoses; it also eventually ended their marriage and broke up their family. Susie was too young to understand or be affected very much when Kay and George first tested HIV-Positive, but it didn’t take long to impact on Susie’s life as well.

When her husband left in ‘94, his family began to try to take Susie away from Kay, believing that Kay would soon be dead anyway. Her husband’s sister, Charlotte, had two sons, but always wanted to have a daughter as well, and this seemed like a perfect solution. So she tried to go to court to prove Kay was an unfit mother. Charlotte pointed out to the court that Kay was reckless and unconventional, citing that Susie had been a home birth, for example. Kay had also chosen not to have Susie immunized with some of the vaccinations available. Plus, of course, Kay was HIV-Positive; and although Susie had tested HIV-negative in the past, she did not have Susie re-retested. “I was in ‘dangerous’ denial,” they said.

On the other side of the coin, Kay didn’t like what happened to Susie when she visited her family in New York. Always in excellent health at home, Susie would be made to drink a glass of milk with every meal, and she would develop a cough and runny nose every visit. To the family, however, it appeared like Susie always had this condition, since she always had it with them. They tried to use that in court as well and claim that Kay didn’t take care of her daughter’s health properly. They were adamant that Susie needed to be scratch-tested for allergies. Kay, of course, simply asked the family not to give her all that milk and cheese while she was there; she was sure her symptoms would go away. But she was forced by court order to administer antibiotics to Susie for her chronic bronchial condition, or risk losing custody.

Then one Sunday, Susie didn’t return from a routine visit to her dad. The family refused to let Kay see Susie when she went to New York to find out what was going on. Kay had to go first to the courts in California, and then to the courts in New York. Finally, with a police escort, she got Susie back.

“They wanted custody of Susie and for me not to be able to see her, ever, and they tried to get a court to agree. But I think that George actually stepped in and helped stop this insanity at that time, because I know he really loved Susie, and he didn’t want to see her put through everything that his family planned to do. But he was dependant on them for so much personally, taking care of him through his struggles with the brain tumor, that he simply couldn’t protect Susie as I know he would have wanted to do.”

“It’s amazing to me how people, who are otherwise good people and try to be good parents, can put a child through all of that. Supposedly, they have the best interest of the child at heart, but it’s really crazy.”

Kay won that court battle, but it wasn’t the end of it all. George and his parents moved back to California, and the parents – Susie’s grandparents – then tried to gain custody of Susie. The court awarded them visitation rights, because George was living with them, although he was too sick from the tumor by then to be an active father.

Shortly after George died, the grandfather died as well. For a little while, the grandmother took Susie to Santa Barbara to visit her aunt, but they gradually lost interest “because they could see that I was still really healthy and Susie was thriving under my care. After years of calling Child Protective Services and calling me this or that name, even the people at CPS got tired of hearing the complaints when they could see none of the allegations were true. Susie was not sick, doing very well in school, and very happy. There was no reason to intervene, basically; so they stopped hassling me.”

Since then, Kay has been tested three more times for HIV. She followed the suggestion of a friend to do it anonymously, so that the doctor wouldn’t be prejudiced from George’s Positive diagnosis. Kay tested Positive on one test, Negative on another, and Indeterminate on the third. Susie also tests Negative.

“By then, it really didn’t matter to me or pertain to my life, except for the way people would relate to me, and the things they try to do to me.”

Still, her Positive diagnosis had changed her life forever and shook her to the core. Always an independent and self-confident woman, she lost her self-esteem and her judgment during the court battles with her husband’s family and got pregnant with the “wrong” man, Robert – an alcoholic and drug addict. In 1996 she had another daughter. George’s family reported her to CPS once more, citing the history of Kay’s unconventional ways. Kay was forced to stop breastfeeding and told that she would lose the baby if they discovered that she had resumed nursing the infant. Although Robert stood by her during the CPS ordeal, when Kay became fed up with his addictive and abusive behavior after almost five years and kicked Robert out of the house, he became her worst nightmare.

All of a sudden, Kay was back in court, answering charges from Robert, five years after the fact, that she endangered him and their daughter by having sex with him and having another child when she was HIV-Positive. But he didn’t stop there. He accused Kay of having natural childbirth, of breastfeeding the new baby, and not giving her AZT in utero, as if testing HIV-Positive on two tests, and Negative and Indeterminate on two others, was worse than being a drunk and a drug addict.

Robert went so far as to hire a friend to run her off the road, and the plan was to then plant narcotics in her car and pour alcohol down her throat. He stalked and videotaped her and her daughters. He burglarized their home when they were gone on vacation and took phone lists, calendars and a journal. He and his ex-wife, Marsha called family and friends from the phone lists alerting them to Kay’s HIV status. He accused Kay of having affairs with the police officers who came to write up Robert’s violations of his restraining order.

From time to time, Robert would beg Kay to take him back. When she wouldn’t give in, his behaviors would escalate, forcing her to leave her home. Robert threatened to kill her, and threatened to kill anyone who helped her. Robert was finally arrested, but plea-bargained down to two misdemeanor charges of restraining order violations.

Robert has waged a war of attrition on Kay. Her finances are exhausted, and without the money to pay a lawyer, she has had to defend herself in Family Court. Robert keeps fighting Kay for custody of their daughter, not because he is really concerned about seeing his daughter, but because it the only “legal” way to continue to control and harass Kay. Robert claims that his actions are justified by the health issues and his daughter‘s welfare – not because Kay is an unfit mother, but because she is HIV-Positive.

Kay R.

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