On Dating and Finding Love as a Woman Living With HIV
November 20, 2013
Was there not education available around how HIV was transmitted, or how "ARC" was transmitted? Or was he just ignorant to it?
He was very fearful. He was a very smart guy, gifted guy. These days he's a child psychologist and, I think, has written books, and blah, blah, blah. But he just was very fearful.
His father had polio and was in a wheelchair. His parents were divorced. But he grew up with a dad who had polio. I think that played a huge part in how he reacted.
I went with my boyfriend to AIDS Project Los Angeles, and we met with a woman who was an HIV education specialist there. We talked for over an hour, the three of us. She went over all the facts about transmission: how you're infected; how you're not infected; no, you don't have to be worried about saliva. Again, this was very early on. It was 1987, very early on in the pandemic spectrum. Not as much was known about things, and there was a lot of uncertainty.
However, she was able to say, "No. You cannot get this through saliva. If you use condoms consistently, every time you have sex, then the chance of transmitting the virus, especially woman to man, is extremely low, infinitesimal."
Well, he took that nine gazillion and ninety-nine-to-one-percent-chance thing and he jumped on that one percent. He's like, "Well, that could be us." He just had a lot of fear. It really didn't matter that he was hearing facts from someone. He just had a lot of fear in his head, I guess, because he grew up with somebody whose life was totally changed by a virus. His dad was in a wheelchair. Even though he could cognitively absorb the information, he wasnt believing it -- or it didn't change his fears about it.
So, basically, it didn't do any good, as far as I was concerned. I thought it was going to help alleviate his fears and we could have somewhat of a normal relationship again. He was just so awful and so ... not just afraid, but he was actually verbally abusive and degrading. He even said things like calling me a leper at the time -- a diseased leper. It was just awful.
I really got to see what this person was like after finding out about my HIV status. Had I hypothetically married this guy without finding out I was positive, I'm sure I would find out he was a total jerk in other ways -- if I even got that far, to marry him. I wouldn't want to marry someone like him, even if I never tested positive and we were in that relationship. Knowing later on all about what he was all about: That's not somebody that I would want to be with, even casually.
Had you told other people about your diagnosis around that time? If so, how did you start those conversations?
I had gotten involved, right from the start -- the media department from AIDS Project Los Angeles really latched onto me, because I represented a face, a person that totally broke the stereotypes that people have of who is infected. I wasn't a gay man. I was a heterosexual woman. I was in college at the time. I was a student. I was intelligent. I was not homeless. I was not a drug user at that time -- it had been many years since I had stopped. And regardless, I had never been an injection drug user. I wasn't a "prostitute." I wasn't this, that, or all these other stereotypes that people had about who was infected. So the media department really liked me.
Whenever they'd get calls from talk shows or different things, they would suggest me for a lot of those gigs. Actually, they were nonpaying gigs for a while, until I was on this show -- I think it was called Hour Magazine. In any case, there was a woman who was on a panel with me who was a Ph.D. She worked for the Rand Corporation and she had a show on the Playboy Channel all about sex. It was actually this really intelligent, good show, but the only entity that would put it on was the Playboy Channel.
She said to me, "You should get paid. They are exploiting you if you're not getting paid. They have money to pay you. They should pay you."
That changed my feelings about it. Later on, I was asked to go on Oprah. If I had gone on Oprah, I would not use any disguise, or wigs, or the things that I was doing before on Geraldo and Hour Magazine and different things. I thought, if I go on Oprah, it would have been with this other woman who ... I forget. Alison, or something? This woman from Long Island, New York. Is it Alison Gertz?
She died, but she was very vocal. She said, "I got infected" -- like the first time she had sex, and everything. I would have gone on the same show with her and she was out with her status. So I wasn't going to be wearing a disguise, a wig and big sunglasses. I wasn't going to do that if I was on.
I wouldn't have done that, anyway, if I went on Oprah. But my brother, who was a paralegal at the time, said, "I'll be your manager. I'll talk to them." But she didn't pay her guests and they wouldn't budge. So my brother made the decision for me that I wasn't going to do it. He said to them, "There's too much for her to risk. This is a big, a really big, deal."
I think she pays her professional guests -- the expert guests. But, no. So I didn't do it.
I just got very involved in working with the community and doing education, and even decided I wanted to do social work with people -- but I was an art major at the time, when I started college and decided I wanted to work with other positive people and help them survive this thing.
It sounds as if you had already told your family. How did that come about? Did you tell them immediately?
I tried to wait as long as I could to tell my parents. I thought, I'm not going to tell them. I'm going to go as long as I can without telling them.
So that was two weeks. My dad, right away, just hugged me. My dad and I are very close. He just hugged me. It never changed anything about how he treated me or anything. My mom, who is also very cool and open-minded -- both my parents are very liberal, and I was raised that way -- she wasn't educated about transmission and how you can and cannot get infected. So there was a time early on after I told her that we were in a restaurant, and she accidentally drank out of my water glass. And she flipped out. She thought I was trying to kill her. She's like, "You saw me drink out of your glass; you didn't say anything. You're trying to kill me" -- all this stuff.
We've always had a kind of love-hate relationship, like a lot of mothers and daughters. But I said to her, "Mom, you've got to get educated. You do not get infected from drinking somebody's water, water glasses, or water fountains. That's not how you get infected." To her credit: She was in college at the time, working on her master's as a speech pathologist, and went into the school library and got a lot of information, got very educated about it, and became cool after that.
So I was lucky that she was willing to get educated and learn these things.
My best friend to this day, my friend Karen: We met as art majors in school and we became really close friends right away. I didn't tell her about the HIV until almost a year later. She said, "I'm going to be walking in the L.A. AIDS Walk. Will you sponsor me?"
I said, "Oh, well, speaking of AIDS, I've got something to tell you." And I told her. And she was wonderful. She's like, "Why did you wait so long to tell me?" I don't know. I guess I just didn't want our friendship to be based on that, or have that component as part of it from the start. I wanted to just not have that as an issue.
In terms of dating and relationships: I know that in '89 you got this terrible man out of your life. What's your dating and relationship life been like since then?
Dating and relationships. This subject was so powerful and significant to me in my life, as a person in their early 20s, finding out their status, that I ended up writing my master's thesis on the topic. The title of my thesis was "The Effects of an HIV-Positive Diagnosis on Heterosexual Women's Intimate Relationships." I presented it at the International AIDS Conference in Vancouver in 1996. I was on a social work panel.
I picked this topic because it was so near and dear to me, even though I wasn't one of the women that was part of the study that I interviewed. But I really wanted to find out more about how other positive women were coping with their relationships -- their intimate relationships -- after their diagnosis.
It was a qualitative study, as opposed to quantitative. So, there was not a huge group of people, maybe 12 women or so, that I interviewed. And it was cool. I got a lot of different types of responses from people. I had been in a relationship. Like I mentioned earlier, I didn't want to limit myself to just dating HIV-positive men. So, pretty much from the start with dating, after that other boyfriend moved out, I didn't look to the HIV world for a boyfriend.
My next boyfriend after that was studying music at my school, Cal State Northridge, and played classical guitar. He was actually a professional guitarist/musician. I saw him play and I was smitten. And he accepted the HIV. We were in a two-year relationship. There were other things that I think broke up the relationship, other than the HIV. That wasn't really a big part of it. It was more like he was kind of commitment phobic, and he'd do the push-pull commitment dance.
After that, I had a six-month relationship with this guy who I'd met doing one of my internships toward my marriage, family and child counseling license. You have to do 3,000 hours of work in different categories to be eligible to get your license and I was working in a mental hospital at the time. He was there as a nursing assistant.
This guy was really hot -- you know, physically, chemistry and everything -- but like the original boyfriend that infected me, he had this whole dark side to him, dark bad-boy thing. That was not a good relationship. He was actually kind of misogynistic. Yes, he was hot. Yes, we had great sex. But it was not good emotionally to be in that relationship.
And then, let's see. My ex-husband is not positive. He was negative. I met him working on the set of the movie Ed Wood. I had a '52 Packard that I was using in the movie and he was Johnny Depp's bodyguard. I was like, Get to know the bodyguard; get to know Johnny. I ended up marrying the bodyguard, not Johnny. I did meet Johnny Depp. But, yeah, we were married for three years.
I think, more than the HIV -- actually, the HIV did play a part in that relationship breaking up, because he did not want to use condoms. There was also a big age difference. He was 15 years older than me. He's Chicano and I think some of the not wanting to wear condoms may be a big part of that culture. And then the 15-year age difference -- he's actually a Vietnam vet -- I think also worked against our marriage. But, yeah, that was my marriage.
I did date an HIV-positive guy later on -- actually, through this relationship, I became infected with HPV [human papillomavirus]. It turns out he had a whole host of things -- I called him the 4-H Club, because it was like HIV, hemophilia, hepatitis, HPV -- that I wasn't aware of. At the time that I met this guy, it was a very bad period for me emotionally. I was going through a little mini nervous breakdown. I hooked up with this guy at a conference in San Diego, a heterosexual HIV conference. And he didn't use a condom. At the time, I was not being assertive, to insist on it.
In any case, the HPV that I contracted through unprotected sex with him is what led to my having cancer four years ago. I had an internal form of squamous cell carcinoma, colorectal cancer. And it started with the HPV that I got from him. I almost died from that.
I'd lived, ironically, so long, doing so well with HIV, which everybody thought was a sure death sentence back in the day. And then made this dumb mistake, and almost died as a result of that. It was stage 3, and I went through chemo and radiation.
What year was that?
That was 2008.