June 18, 2008
Listen to Audio (64 min.)
By Bonnie Goldman
I'm here today with Shelley Singer of Los Angeles, California. Shelley was diagnosed in 1997, and she is a long-time HIV prevention educator and activist.
When you found out you were HIV positive in 1997, what was your first feeling about it?
My first feelings when I found out were: How do I tell my husband? What have I gotten myself into? Can I get myself out? Can I do this? Is this something I'm going to survive?
What were the circumstances that led you to get tested?
I had been ill with undiagnosed illnesses for approximately a year and a half. I had been in and out of emergency rooms, in and out of hospitals, in and out of doctors' offices, for months, getting sicker and sicker. No one knew why. And I had lots of female problems. I was failing Pap smears. I had chronic yeast infections. I had all kinds of illnesses and pains and problems.
That started in the early months of 1996. By, I'd say, early September of 1997, it had gotten so bad that I had this pain in my chest that felt like a rock, like a boulder was in my throat. It was pressing down on me to where it was hard to breathe. I couldn't swallow, and I was losing lots and lots of weight. I couldn't eat very well, and the pain was really bad.
I went to another, in a series of doctors that I'd been to, trying to find out what was wrong with me. This doctor misdiagnosed me with an ulcer, gave me a prescription -- as they all had -- and told me to come back for a follow-up in two weeks.
It was the end of September when I went back for the follow-up. By this time, I had white stuff growing in my mouth, coating my tongue, coating my vocal cords. I could barely speak. I was also so weak that if I wanted to take a shower, I didn't have the energy to dry off afterwards. If I walked to the mailbox, I didn't have the energy to walk back with the mail.
So I went back for my follow-up to this doctor, regarding my alleged ulcer, and it was someone new, another doctor. This doctor looked at my chart and said, "It says here you have an ulcer. How are you feeling?" Croaking out as much as I could, because I couldn't really speak, I said, "Not very well. What's this in my mouth?" I opened up my mouth.
After a year and a half of illness, that doctor looked at me and went, "Oh, my God. Why don't you tell me why you're really here?" I just looked at him and I said, "I'm here for a follow-up for my ulcer." The look he gave me, now I know, was a look like: You really don't know what is wrong with you ... but I do.
He said, "You have thrush." I never heard of it. I said, "What is it?" He said, "It's a yeast infection." I knew what a yeast infection was. Never had one in my mouth. Didn't know what that was. That's when he said, "Okay. I have to tell you something. You don't have a working immune system." I asked him, "Why would that be?" He gave me a few examples of reasons why someone would not have a working immune system: a newborn baby (I knew that wasn't me), someone who had had a transplant, or someone who was very, very, very, very old (and I knew that wasn't me). Then he said, "Or someone with AIDS, someone who's had years of HIV, destroying their immune system."
I knew that wasn't me, either, because I didn't think women got HIV. I had been ticking off on my fingers each time he mentioned a reason for not having an immune system. So after those three, I held up my fourth finger, like, the Shelley category: Why don't I have an immune system?
He had stopped talking and was looking at me. I'm looking at him, and he's looking at me. Finally, he goes, "You still don't understand what I'm telling you, do you?"
I said, "No. I do not."
And he said, "I'm so sorry. But I'm telling you that I'm diagnosing you with full-blown AIDS."
Without a blood test?
He didn't need one. He just looked at me and said, "I'm telling you that I believe you have AIDS. I believe that that's what this is." I was floored.
He said, "Have you ever had an HIV test?"
I said, "No, of course not. I'm married. I'm a woman. Why would I? You know, come on."
What city was this?
This was here in L.A.
L.A. was the place where HIV was first recorded. There were huge numbers of people living with HIV from the early part of the epidemic, so many people should have been more familiar with it than your experience shows.
Right. But like I said: For a year and a half, I had been in five different hospitals. I had been admitted into hospitals three times. I had already had major abdominal surgery where they removed my Fallopian tubes because of infection. None of that made anyone ask a question. The pelvic inflammatory disease, the chronic yeast infections, the failed Pap smears, the hospitalizations, the intense pain, the infections, what they thought was the ulcer -- none of that made anyone ask a question.
I, on the other hand, trusted that doctors are gods. They know these things. So I didn't question. Well, I questioned, but I didn't dig deep. I didn't say, "Why am I sick? Why is this?"
If they said, "It looks like this. Here's a prescription. Come back later," I took it verbatim. I took it as it was, and said, "Okay."
In fact, looking back, a friend asked me, "Don't you want to know why you're so sick?"
I said, "No. It just matters to me that I get my medicine, and get better." Now, I realize, perhaps she knew something. Maybe she was a little wiser than me and didn't want to say anything outright, but was trying to get me to question deeper. But I didn't.
It wasn't until the new doctor said, "Would you agree to taking an HIV test here in my office now, before you leave?"
Since he had told me he thought I had AIDS, I was like, "Okay. Sure." I thought, I guess everyone should get an HIV test some time in their life. I was so naïve. I was so naïve ... So I just said, "Okay."
He goes, "Great. I'm going to go out and set up the test with my nurse right now, and you wait here. And I'm going to send someone else in."
Another doctor came in. The other doctor said, "I want to look in your mouth." I opened up my mouth and he just took one look and leaned back and said, "Yes. You understand why we're worried."
My mind was racing. I thought, why would a doctor say, "We're worried"? Then I thought, this is my second opinion. This is real. I'm in trouble, and these guys are telling me something that I don't know how to handle. I don't even know what they're talking about.
So I went in the hallway to the lab and I got my blood drawn. He also gave me an appointment for the next morning in a hospital, outpatient, at 8 a.m. for a test with a gastroenterologist, because of the thrush in my mouth and my throat, and the pain in my chest.
I was whisked out of that office, to my husband, waiting in the waiting room, who asked me, "So? How's your ulcer?" I just stared at him. We walked out into the hallway to the elevator, and I said, "I don't have an ulcer."
He was like, "Well, that's good. Then what's wrong?"
And it all hit me; it all came rushing to the front of me.
I said, "He says he thinks I have AIDS." I collapsed onto the carpet in front of the elevator, in a heap, crying, as the words came out of my mouth. When the elevator doors opened, people had to step over me, and around me, because he couldn't move me. Finally I got up.
He must have been standing there, open-mouthed.
He was. He was in shock. For some reason, even though I didn't know why, I knew that it was me. I never once thought, my husband gave this to me -- my husband. I knew who I was, and who he was, and how I lived my life, and where I'd been in my life. I kept thinking in my head, oh, my God, did I kill my husband? Oh, my God, what have I done? Oh, my God, what's happening to me? All of these crazy thoughts were in my head.
Then we went outside, and we were on a motorcycle. He rode me there on a motorcycle. I got on the back of the bike, and we were driving back. We were actually legally separated, so we were driving back to my apartment, and I thought about letting go, off the back of the bike. The ride home, I thought, I can't deal with this. If I let go, it will all be over.
But then, being a pragmatist, I thought, but what if I don't die, and now I'm a paraplegic, or something, with AIDS? Now what do I do? Now who's going to take care of me? Now how do I live? So the fear of not actually dying was worse than the fear of living. I know that doesn't make sense. But when you're thinking of letting go off a motorcycle, the fear of the pain of falling on the asphalt, the fear of being hurt, was greater to me than the thought of dying, and greater than the fear of: how was I going to live? The pain. I just held on. I just decided, "Wait, I have to think about this." And I held on for the ride back to my apartment.
The next morning, I had my test at the hospital, and I found out that that pressure was not an ulcer. It was esophageal candidiasis. Before I ever got the results of the blood test, the gastroenterologist who did the throat test gave me an AIDS-defining illness -- esophageal candidiasis. So by the time I got my lab results back from the blood test and found out I had 54 T cells, I had two separate AIDS-defining conditions.
Meaning, thrush in your mouth, and thrush in your esophagus.
Did your husband stay with you that night? Or was he in shock, or upset?
He was in shock. He stayed with me, because I was like a zombie. I was numb. So he just stayed with me, on the couch. When we went back a week later for the full results, he went with me, and said, "We need to work this out. We need to be together." Because everyone thought I was dying. Well, I was, physically. And everybody just assumed I would die.
He also went for his testing, I imagine.
He went for his test and he came out HIV negative.
How long had you been together?
We started dating in 1991, got married in 1992. I started getting sick in '96, and this was September of '97. During that entire time, I did not transmit HIV to him.
You had unprotected sex?
So you were with your husband from 1991 to 1997. How do you think you were infected with HIV?
I know I never used a condom in my life.
Meaning, not only with your husband, but with other men?
With anyone. I never used a condom. I didn't like them.
You didn't ask a man to wear a condom, ever?
I never asked a man. If a man asked me, "Do you want me to use a condom?" I said, "No."
You felt that your only risk was pregnancy, so you took the Pill.
But, again, you never thought HIV was a risk. During that time, in the early 1990s, I don't think many women did.
No. In Florida, in 1986, I was friends with this wonderful, dear man named Thomas. He was a gay man. We were friends and we would talk all the time. I remember this, because it's one of the first thoughts that I had at my diagnosis. We were talking back in 1986. I was living in Florida with him, with friends. He said, "I'm so afraid of this disease, this illness that's out there. It's killing gay men."
I said, "Yes, I have heard of it."
He goes, "I'm so afraid for my friends, and for myself. But I'm so glad that you'll never have to worry about that."
I took him at his word. I thought this was a gay disease, and I thought I would never have to worry about it. So I never did. Of course, I knew there was AIDS. I read about it in the newspapers. I would host fundraising events for AIDS service organizations, and do the AIDS Walk and all of this stuff. But I never considered that it was something I should worry about. I was shocked when they told me I had AIDS. I didn't know women got it. I was that ignorant, that naive. I never knew. I never used a condom.
You were told, more or less, that you were probably going to die soon. Did they say how long you had when they diagnosed you?
Not at that moment. The doctor gave me a piece of paper that had two names on it of HIV specialists in the Los Angeles area. One of them was Dr. Michael Gottlieb.
He wrote the first report about people living with HIV that he noted in his area, I believe.
Yes, he did. One of his former colleagues, Dr. Jeffrey Galpin, was the other name. He said, "Go to these two guys, shop them, see if you like one of them over the other. Because this is going to be a lifelong partnership, so find the right doctor. If neither of these two guys [suits you], get referrals. Find the right doctor, someone that answers to your needs and what you want. Because this is very important."
So I went to each of these doctors. I set up appointments. For the next several weeks, I would go to these doctors and interview them, show them my lab reports, talk to them about their style of treatment, what they knew, how they wanted to proceed. Dr. Galpin -- he was aggressive, he was very frank and knowledgeable. I instantly liked him. So that's how I picked the HIV doctor that I wanted to see. I saw him in October of '97, and he put me on medicine.
Do you remember your first regimen?
It was so hard to take. Yes. It was 12 pills of Norvir [ritonavir] a day, two pills of Invirase -- saquinavir -- a day, two pills of Zerit [stavudine, d4T] and two pills of Epivir [3TC, lamivudine]. Plus, all the prophylaxis and Diflucan for the thrush.
By prophylaxis you mean you took meds to prevent opportunistic infections like pneumonia and other things.
Exactly. They put me on Bactrim, but the first thing that happened was I discovered I had a very bad allergy to Bactrim. I got even sicker. I had to treat that first before I could go onto the anti-HIV meds. That was a little bit of a setback right away. But then I got on the HIV meds.
A year after I started, my parents came out for a visit. They wanted to meet my doctor, because he had kept me alive for a year. They really wanted to meet this guy. I took them to meet my doctor. He told them: "I never told Shelley this, because I will never put a limit on someone. I will never tell them, 'You have this time span,' or something." He goes, "But I'm going to tell you now because I'm so proud of her, and of the accomplishment of how far we've come. I'm going to tell you that when she walked into my office in October of 1997, I knew from my years of experience in treating HIV patients that if she did nothing, if she did not get on treatment, if she did absolutely nothing, she had eight months left to live."
I looked him. I said, "You never told me that."
He responded, "No. I would never tell you you have eight months to live, because I don't believe in that." He said, "What I knew was that if you did absolutely nothing, that's where you were in your HIV disease."
Because you had advanced HIV, because you had only 54 T cells and you had opportunistic infections.
I had three opportunistic infections and a count of 54 T cells. He said, "I knew from my experience that at that advanced stage, you probably had eight months left, if you did nothing."
I said, "So, that was a year ago."
He smiled and he said, "That's right. That was a year ago."
What was your CD4 count, or your T cells, by that time, after a year?
By that time my T cells were 321.
They really rose.
Mm-hmm. He looked at me and he goes, "But see? When you aren't limited by what someone else's expectations are, when someone else says, 'This is all you're going to be,' when you're not limited, when you believe in yourself and you believe that you can do anything ... you can. You're proof of it."
He goes, "Who would have ever known you could get your T-cell count not just over 200, but 321? Who could have ever expected you to be as healthy as you are, sitting here in front of me today? Who could have ever guessed any of this? You have all the possibilities in front of you, so long as you don't allow anyone to limit you."
At that point, with all those pills, the 12 pills of Norvir, the nine pills of etc., it was kind of a full time job just to take meds, because some were with food, some were without food. Is that true?
Yes. I had to try to get up in the morning, eat a full breakfast, take six pills, wait an hour and a half so that I could take other pills within the two hours after eating, constantly trying to figure out what to eat, when to eat, how to eat it, what time was it, where was I going to be. Was I going to be in a place that had good food? Food safety. Food storage. Oh, my gosh. It was so confusing.
I would have people call me -- "Please call me at 2 o'clock" -- and say, "Hi, Shelley, have you eaten yet? Have you taken your meds yet?" I had alarm clocks going off. I had pill boxes. I still, to this day, carry a full day's dose of pills with me.
Just in case you don't get home at a certain time.
At all times. That's right. Just in case. Because you never know. The car breaks down and someone says, "Why don't you spend the night because it's 8 p.m. and there is no garage to fix your car? Why don't you spend the night and we'll fix it in the morning." What am I going to do?
Right. You can't say, "Well, I have to go home for meds, anyway."
Right. So I always carry a full day's dose with me. If I'm going to spend the night somewhere, I carry not only the next day's dose, but an extra day on top of it.
Just in case.
Just in case my plans change. I always have to be sure that if plans change, I'm prepared.
Let's go back to after you were first diagnosed, and a couple of days later. Who was the first person you told besides your husband?
I called my parents in North Carolina.
Did you expect them to react well? Or were you expecting the worst?
I didn't really know what to expect. I was in a panic. I have always been independent. I have always been on my own, done whatever I needed to do. I'm not the kind of person that calls home every day. All of a sudden, I was faced with something, for the first time in my life, that I felt kind of afraid and unequipped. I was thrown into a tailspin. So I reverted back to, "Mom-my!"
How old were you at the time?
My birthday is the 31st of August. This was late September. I had just turned 38. Up until this diagnosis, my biggest panic was, oh, I'm approaching 40. Now, all of a sudden, I'm like, well, wait a minute. Will I even reach 40? All of a sudden now it was a goal and not something to be feared. I was like, wait a minute. I want to reach 40 now. Now I need to!
I called my mom and dad and I just cried to them. I said, "I don't know what to do. I don't know if I'm dying. I don't know what to do." They reassured me. My mom asked me if I had told my sisters, who all live in different states and countries. I said no, that they were the first people I called.
My mom said, "Can I call them? First, because it will help you. You won't have to keep saying all of this over and over and over again. But also because it will help me, because I need to say it over and over again. I need to process this. I need to get it into my head."
Your mother sounds amazing. Is she a therapist?
No, no. Just a really cool lady. So she said, "Can I call your sisters? Can I tell them? I need to ..." I think she needed to do what I was doing. I needed to call my family. I needed to get that reassurance. She needed that. She suddenly felt alone where she was, and she needed that reassurance. So she was like, "Can I call your sisters? Can I tell them? I need that bond. I need my daughters. I need my family. This is too much for me alone."
I said, "Yeah. Would you do that?" So one by one, she called my three sisters. Then, one by one, they called me. Since now they had been told, I didn't have to go through all that beginning, that, "Um, um, I have something to tell you."
They called, saying, "Mom just called. What can I do? What's going on? How are you?" Then I could just jump right into the emotional support.
Did you find that you got a lot of emotional support from them?
I did, and I still do. I get a lot of emotional support from my family. It took me quite a few years to tell cousins. My grandparents, I never told. They died not knowing. I couldn't do that.
Why didn't you tell them?
I guess I didn't want to disappoint them. I didn't want them to change what they -- not what they thought of me ... but I didn't want them to be afraid. I didn't want them to be afraid that I was going to die. I didn't want to disappoint them and change how they felt, and the relationship we had. I just couldn't deal with that.
After you told your family and your sisters found out, did you tell friends?
Yes. I told my closest childhood friends. I called them up, because they are in New York and in Florida -- the places I've lived, and where I grew up (in New York). So I called my childhood friends and I told them one by one. They were all very supportive. Then my friends out here ... I did a rather crazy thing.
First, my most intimate, closest friends: I, one by one, invited them to dinner. I would have them over for dinner at my house and I would cook a nice dinner, and we would sit down and talk. Then I would say, "I have something to tell you." And I told them. "I know you know that I have been very, very ill. Well, this is why. This is what it is."
Ironically, a dear couple that I invited over one night to disclose my AIDS diagnosis looked at me -- and I had known them, now, for five years -- looked at me and said, "Well, Shelley, then I guess it's time we disclose."
I said, "What are you talking about?"
They said, "We both have AIDS, also."
I did not know that. So, here we were. We had known each other. We were very close friends. Saw each other every week for five years. By my telling them that I had AIDS, they admitted that they both did, too.
It was weird. It was very weird. Because, now, they knew it for years and years. I had only found out for maybe a couple months. So I was much newer to it than they were. They were kind of reassuring to me. They have both since passed away. But ... not me.
But they served as guides -- they told you about resources.
No. They more like lived in denial. They did not take medicine. They did not seek help.
Why didn't they take medicine?
I don't know. I really don't know. In fact, the male friend -- I don't want to say his name -- but the male friend, his parents begged me to make him take meds. "Look at how healthy you're getting. Look at how strong you're getting. Please tell our son. Please make him."
I said, "I can't make anyone do anything." I said, "He does see how much healthier I'm getting. He does see the weight that I'm regaining. He does see that I'm getting stronger. But all I can be is a support for him, and a friend to him, like I've always been. If it's his choice to not take medicine ... I don't agree with it. I wish he would do more. But I have to support him in his decision to be who he is."
It was heartbreaking, and it was very confusing, emotionally, for me to watch someone deliberately ignore and deny what could have saved his life, and to love him anyway. To watch him die, knowing that, at the same time, I'm swallowing 30 pills a day, struggling to regain my health and my life. I'm watching him give it up. It was really, really hard.
You owned a bar for eight years with your husband.
A sports karaoke bar?
Sports and karaoke bar. Yes. So that's how I disclosed to the general population. First what I did was, I had my friends, my intimate friends, over for dinner, and I told them one by one. When all my closest friends knew -- my dearest, most intimate social circle -- when they all knew, that's when I had a fundraiser at the bar and I disclosed to the general population.
I was a big fundraiser. I would create these big fundraising events, and I would host them in my bar and raise all this money, and give it all away. I loved doing that.
So now I find out I've got AIDS. Now, they are used to -- I had already done an APLA [AIDS Project Los Angeles] thing; I had already done all this stuff in the bar -- so I'm now having this big fundraising event for APLA. You know, Sy Sperling, the Hair Club for Men? You know how he says, "I'm not just the president of the Hair Club for Men, but I'm also a client"? He pulls the wig off, and shows that he's bald. I did that.
I had my big fundraiser event, and I got up, and I thanked everybody for being there, and I told them we were raising money for AIDS Project Los Angeles. Then I disclosed. I said, "This time, I'm not just the fundraiser, but I'm also a client."
Was there a gasp?
There was a gasp. Yes, there was a gasp. No one knew. They all just stopped. They were looking at me and then whispering to each other: What did she say? What did she say? Did she mean ...? Did she say ...? What? What? What?
I said, "Yes. Yes. That's what I'm saying. I'm saying that the illness that you have all known that I have had, that you didn't know what it was, is AIDS. I have AIDS and I'm a client of AIDS Project Los Angeles. So this fundraiser helps people with AIDS, including myself."
They were like, whoa. I raised $2,000 that night.
This is a bar with a capacity of 64. Little, tiny neighborhood bar. One of those little neighborhood bars you go into with red vinyl seats and booths and stuff like that.
I had to talk to my husband. I was like, "Do you think this will hurt your bar? Will this hurt your business? Will this hurt you? Will this have repercussions against you?"
He said, "You do what you need to. This is about you, not me."
I went, "OK. Then I'm letting you know I'm going to disclose in front of the bar."
He said, "OK. Do what you need to do." So I did.
Did you ever find a support group? Or did you not feel you needed one?
Almost right away, I found a support group. Again, it was someone else that found it for me, who made a phone call to an agency here in Los Angeles. A woman got on the phone. I will tell you her name. Her name is Marilyn and she was my mentor. She took me under her wing. She brought me to my first support group that she facilitated. She was an HIV-positive woman.
No. At Women Alive. She brought me into the fold. That was the first time when I was in a room full of women. I looked around that room and I said, "You all have HIV?"
They responded, "Oh, yes. Yes. Everyone."
They went around the room and each woman said, "I was diagnosed in this year."
"I was diagnosed here."
"This is my life story."
"This is how I found out."
"This is where I am now."
I was amazed. Oh, my gosh. I felt like I was home. I looked around and was amazed. I thought to myself: OK, you're all living! You're all thriving! You're all fighting! You're all dynamic women! You didn't turn into zombies. You don't have purple skin. You're not monsters. You're real, great, vibrant, normal women. Wow. I can do this! I can do this!
I stuck to them like glue. I joined the agency. Marilyn took me to advocacy meetings. She took me to policy focus forums. She took me to political meetings of HIV commissions. She took me around with her to all this advocacy and activism, and just showed me the dynamic, vibrant life of activism, of fighting, of standing up, of speaking out, of being heard, of making a difference, of being alive, of being aware. It saved my life. It saved my life. It showed me that there was life, that I wanted life, that I could have life, and that life could be really fulfilling and worth anything I went through.
What were the particular skills they gave you that made you feel that way? What inspired you so much?
First of all, when I would go into a focus forum or a commission meeting or something and speak up, I saw it made a difference. People listened. They would ask me questions. It might change a policy. It came out in a report, that this was reported, or that that was found. It changed things. It made a difference. I saw that. So I knew I have power. I have a voice. I do matter in life. So that was really influential.
I learned so much by being in this support group. I learned simple things like food safety, how to eat, what was important, if I had a side effect, if I was nauseous, if I was ill, if I had a problem, how could I fix it, how could I identify it, how to talk to my doctor, how to ask questions, how to be proactive, how to meet other women, how to disclose to other women that I had this, how to listen to them and support, how to get support, how to find support -- all those life skills.
How often did you go to the group?
This group was every week, so, I went once a week. And I needed it. In the beginning, for the first several years, I needed it. I was still very sick. I was in the hospital nearly every six months, having surgeries, having more of my body removed. Anything that made me a woman, everything that would allow me to be childbearing; all of that was taken away from me. So, I needed it more than ever. Knowing that it was sex without a condom, knowing that it was sex that put me in this position, even made me question sex.
By this point, were you divorced?
By this point, yes. All of that was falling apart -- you know, the relationship. So everything else was falling away: who I thought I was, my self identity, my self confidence, my marriage, my thoughts on sex, my sexuality, my sensuality -- all of this -- what my body looked like. Could I depend on my body? Could I rely on it? All of this was falling away.
Friends were falling away. My ability to work was falling away. The one thing that was not falling away was the support of the women around me in this agency, and in other agencies, as I reached out to APLA, Being Alive -- which is not a women-centered organization, but it is an of, by and for HIV-positive organization. So it was a member club kind of a thing.
All of this never fell away. I reached out, and they reached out to me. They gave me the nurturing and the strength and the push that I really needed. They kept me going. I realized that I had an entire community that was not going to let me down, that was not going to abandon me, that understood me, that loved me unconditionally, and that I could thrive in. I immersed myself in it, and have ever since.
How many years, in total, did you go to this support group, would you say?
That particular support group, I was in from 1998 through about 2001. There was also a support group for heterosexual men and women in APLA that started in, I believe, January of 1998. I'm still a member of it. I'm one of the original members of that group, and that group is now ten years old. It's one of the very few heterosexual support groups for men and women in Los Angeles.
I understand that you have started, with a friend, a Web site for heterosexuals with HIV, and you have events. Tell me a little bit about that. What's it called?
Yes. It's called Valley Plus. It started because, in Los Angeles proper, there are all the HIV/AIDS organizations. But in the Valley, the San Fernando Valley, there's nothing. Unless you have another issue: if you're coming out of prison, if you speak another language, if you're of another color, if you're dealing with addiction issues, or whatever -- if you have hepatitis. Whatever co-issue, then there's an agency for you. But if your only claim to fame is, I have HIV, period. That's it. That's my issue, is HIV ... I couldn't find anything. So everywhere I went, I kept going, "What about the Valley? What about the Valley? What about the Valley?"
Finally, my friend, Cathy Olufs, and I, we were talking about it, and I said, "We've got to start something here."
You know what? I'm calling it The Valley." So I actually called it Valley+, with a plus sign, like HIV+, that little plus, positive sign. So I was calling it the Valley+ Club. But a friend of mine helped me to create the Web site. She knew more about how to code and things like that. She put the Web site together, and you can't use the "+" sign. Seeing as it's called a "plus sign," she did a domain name, and she wrote "Valley P-L-U-S," Valley Plus.
Basically, it's a network of HIV-positive, heterosexual men and women. I really advocate for HIV-positive heterosexual men as much as possible, because they are the ignored population.
I think sometimes people think that they really don't exist, that there's no such thing as a heterosexual man with HIV, or something. I'm not really sure.
I know you do prevention education in schools. Is that something that you focus on -- heterosexual men and their part in the world of HIV and transmitting HIV, and taking care of themselves?
That's one of my focuses. When I go into schools or at-risk centers for youth, I don't necessarily focus on that, because, more than likely, I'm representing an agency on their speakers bureau. I belong to four different speakers bureaus in Los Angeles, four agencies, including the Los Angeles Unified School District, their HIV/AIDS prevention program and their health department. With them, I just focus on: This is HIV prevention. This is HIV transmission. This is my story. This is what you need to hear. I don't necessarily go off on one group versus another. It's very all encompassing.
But in my group, in my Valley Plus group, or whenever I'm talking to anyone, or whenever I go into a prevention forum as myself, that's my focus.
I have a mailing list for my group of over 300 people just in Southern California, just people that know about that group. Half of them are men. That means there's a minimum of 150 men I can call up right now that are heterosexual men with HIV. How they got it: Personally, I don't care. I don't care how they got it. What I care is: Are they getting education? Are they learning prevention? Are they putting a condom on when they go out with women? That's what I care about. Do they understand who they are? Are they comfortable with who they are?
In your group, you do some prevention. But you also do fun events to get people dating.
Oh, my gosh. We had a big Valentine's weekend in Long Beach, a weekend event at a hotel with lots of activities and lots of fun things to do. We did a reggae cruise, a three-hour reggae cruise around Long Beach Harbor one year. We do picnics at the beach. We do parties. We do dinners. We go out to restaurants.
Then we do other activities, like go bowling, or miniature golf. We just love to party. We always have a minimum of 50 or 60 people that come, and they come from all over. Because everybody wants to meet other people, in the straight world. We want to meet men that are looking at us.
Is that where you find a lot of dates? Or do you date people outside of that world?
I have found dates through the group. A lot of us find someone to date from these events. Yes, absolutely. It's a nice, comfortable environment. What's really nice about what we do is, we do it out in the "normal" world, out in the mainstream. We don't segregate ourselves out and go, We're going to be in the ballroom in this hotel, just for us. We're all going to wear name badges saying we're -- no, no, no, no, no, no. We book a restaurant and we get badges, but we call ourselves a club. Being positive means you're a member of the club. We ask, "What year did you join the club?" We put that on the nametags.
When people meet, we're out in a restaurant, or we're in a bowling alley or something, we just look like a big social club. We have nametags, and it says: "Shelley. I joined in 1997." That means that's when I got diagnosed. Anybody in our group can come up and go, "Hey, you joined the club in '97? I joined it in '97, too."
Is that the HIV club?
Right. The HIV club, exactly. That's our little code word. We go right out in the mainstream. We're where everyone is. I think it helps us to feel like we're still a part of society. We're not different, or weird or deformed. We're not odd. We're exactly who we were.
What's been your experience with discrimination, or stigma?
I was seeing a dentist for five years before I found out my diagnosis. We had a great relationship. Five years of dentistry. Then, like I said, I started getting sick. It was several years where I was just way too ill to go to the dentist. Finally, after a few years into my diagnosis, I went back.
He said, "Where have you been?"
I said, "Well, I've been ill, and in fact, I want to tell you that I was diagnosed with AIDS. But I'm okay now. I'm on a medical regimen. I'm stable. I'm healthy. And I'm okay."
He was like, "Oh, all right."
I said, "I was a little nervous because I didn't know if you would treat me."
He says, "Oh, yes. Of course. We'll treat you."
Then he stuck me in a room. Two of his hygienists come in, and they are in gowns, gloves and masks. Now, they're not touching me at all, but they are in gowns, gloves and masks. They went around that little exam room, and they emptied it -- every bottle, every jar, every instrument, every magazine, every material that could be picked up and put away or removed, was.
They were ignorant about HIV transmission.
They thought you could breathe on it and it could get infected.
Yes. Spewing this HIV blood all over the walls, like Carrie or something. I don't know what they thought.
Did you ask them anything? You just sat there silently?
I just sat there.
You were stunned, I imagine.
Watching them. In my head, at first, I was like, well, I guess they just are afraid of me. It's my fault. I'm the one with HIV. Then I was like well, wait a minute. No. What do they think I'm going to do? Then it hit me. The whole five years that I was with them I had HIV. I just didn't know it. They didn't know it. They treated me perfectly normally, like anybody else. I never infected them. I never bled on their walls. I never dripped on their instruments. Nothing happened.
In any case, they are supposed to use universal precautions, with everybody.
Right. But all of a sudden, I was different. The room was cleared. I was horrified. When it was empty and sterile, then the doctor came in. He had two coats on: a coat going backwards, and then another coat going forward. He had two sets of gloves on, both of them over the cuffs of his coats, so that it was a complete seal. He had not only the mask on his face, but he had the clear visor over his forehead. He looked like the doctor out of The Andromeda Strain. You could even hear the breathing whhoooh, whoooh.
Did you say anything?
No. I was stunned. I didn't say a word. I just looked at him. He needed to pull a tooth. That's what it was; I was there to pull a tooth. So the visor, the plastic visor, kept hitting me in the forehead.
He'd go, "Oh, I'm sorry. Am I hitting you in the forehead?"
I was like, "Yeah." But he didn't move it. He didn't stop. He just apologized, and then kept hitting me in the forehead, so I had this red mark. Then he pulled the tooth and it went, pop. That was it. It popped. It came out. No blood, no blood. I didn't bleed ... nothing. Nothing. Just, pop, out comes the tooth.
Then he got up and he walked out. That was it. I sat there, going, that's it? All of this and out comes the tooth and I didn't bleed. I just got up and I paid and I left and I never went back. But the problem was, that so traumatized me that I did not see a dentist for two and a half years after that. My teeth are rotting in my head; I'm not going to a dentist.
Until you found out about HIV-friendly services.
Yes. And AIDS agencies, like APLA; there are AIDS agencies that have dentistry. I think Northeast Valley Health Center. There are other agencies. So I'm sure that any woman in most -- most -- any metropolitan area will be able to find a service organization that offers some kind of dentistry if they can't find someone to take care of them.
Unfortunately, I have heard other stories about this rather recently. I don't know if dentists are very knowledgeable about HIV transmission, even though their professional guidelines tell them to use universal precautions and to assume every single person that walks into their office is HIV infected. They disregard those guidelines and some of them treat people badly. It is a minefield for women, and for everyone with HIV.
What a horrendous thing to go through.
It was bad. It was bad. I'm not used to stigma in my life, so it came as a surprise. But it was also an experience that made me realize what other people go through far more regularly in their lives. Other people have stigma, discrimination and feel disenfranchised, underrepresented, or feel put upon, or feel misunderstood or feel discriminated against, in their daily lives. I got a taste of that, and it was very humbling. It really made me realize the struggles that many people go through in life. You know, it also helped me. It solidified my belief in activism. If you know that some people might not be able to be heard, or stand up against wrongs, and you are a person who can -- either you just have the ability or the wherewithal, or you're mad enough, or whatever -- do it. If you can make a stand, whether it's for yourself, for your community, or for someone you know, do it and be heard. Because not everyone has the same skill set or the ability, or the opportunity, to do it. So, if you can, you have to.
What gives you the strength and the ability to do this kind of speaking out on a constant basis? I know you have been on TV, on CNN, and you have been to international AIDS conferences, and lots of public places where you've spoken. What gives you the courage to stand up in front of there and say, "Yes, I have HIV and this is my story," without worrying that someone is going to discriminate against you, or not like you, or judge you? Were you always so fearless when you were younger?
Yes. My parents were activists back in the '60s and '70s. Growing up in New York State, we didn't eat grapes. We didn't eat lettuce. When everybody else in my neighborhood was going, "What are you talking about? Why aren't you eating grapes?"
It was like, "There's this guy named César Chavez out in California. He's a migrant worker, and he says that we're supposed to boycott grapes. So I'm not eating grapes." My friends didn't know what I was talking about. I was a little girl, marching for the ERA [Equal Rights Amendment], with my mom, marching for civil rights. We had the Vietnam War on the news on our TV screen every day.
My mother would cry and scream, "Our boys! Our boys! I can't stand it!" So we would march against the war. I was raised an activist. I was raised to raise my fists and shout out, "This is injustice. This is wrong. This is injustice. This is not American. This is not in the Constitution. This is not civil liberties. This is wrong." I'm a member of Amnesty International. I've been a card-carrying member of the ACLU [American Civil Liberties Union] since I was in college. It's just in my nature to stand up when injustice is exposed, to stand up and say, "We can do better."
That's what it is. It's not just going around, going, "Oh, that's wrong. That's bad." It's saying, "No! We can do better. We can improve this. We can change it. We have to make it right." It's not enough to just bitch and say things are wrong. You've got to stand up for how you can make it right. That's the key. So that's what I do.
I've heard from other activists that it's exhausting, living with HIV and being an HIV/AIDS activist, because then it's HIV, all the time. Do you ever need a break? You know, stay with Amnesty International for a while and do activism there? So that it's not so close to the bone -- not so close to you?
In the past, I have thought about it. Like, oh, I just want to stop all this and be quote-unquote normal, or whatever. But you know what? HIV is everywhere. HIV is in politics. HIV is in economics. HIV is in sex. Sex is the media. Sex is marketing. So HIV should be in marketing. You name it: schools, education, religion, church. HIV touches every aspect of humanity. Anyone who thinks it's only about a certain population, or a certain activity, or a certain way of life is way misinformed, and hopefully not going to be hit in the face with a big surprise.
When I see sex in the media and how it's used to sell everything from a television show to a sandal to a book to a clothing line, I want to go: If the world of adults, who own the corporations, who make the media, if we are so willing to inundate our society and our children and our young people with sex, sex, sex, then we darn well better be just as willing and just as forceful in messages of safety. If we're going to make it that sex is the hottest thing there is, then by gosh, it's our responsibility to make it the safest thing we can, and not just give them: "Oh, sex is so hot ... but don't do it!" You just sold me every item in my house by showing me how sexy it is. The word "hot" and the word "sexy" is everywhere. But now suddenly you're going, "Oh, but don't do it"?
If everyone else is going to tell you how hot sex is, I'm going to go out and tell you to use condoms. I'm going to go out there and tell you that if you want to be sexy, then learn sexy safety. Learn how to put the condom on. Learn to be responsible, if you're going to be responsible. Because you can't turn sex off. You cannot tell people, "Oh, just ignore it."
That's why I have switched my emphasis. The emphasis of my real activism is youth prevention. Because I think it's an immoral injustice to not give the youth of this world the facts, the real truth. If we expect them to act as adults, well, adults expect information. They expect the right to choose with informed choice. I know for a fact that abstinence is the absolute, 100% factual best way to never, ever get infected. Great. But what about the rest of the world? Do I care about them, too? Or do I only care about the people who are willing to follow me without question? No, I care about the rest of the world, too. So if you're not going to heed that absolute fact, then here's something almost as good. Let me tell you the next best thing to know. That is how else to prevent it.
We need people like you, because you're going to change the world. You're going to make HIV an acceptable disease, like it's just like any other disease. People need to get over their stigmatizing of this disease. We need people like you everywhere, in every town of America, in every place in the world. Because the only way it will change is if everyone is exposed to it, and understands.
And understands, exactly.
It's just a disease, and it can't be transmitted casually.
Here's another one of my little pet peeves. Have you ever seen the commercial on TV for herpes and Valtrex, I guess it is? Where there's a man and a woman -- young, in their twenties. They are sitting there in front of the TV camera. This is national network TV, a primetime commercial, national primetime. He says, "I have herpes."
She says, "And I don't."
Together they say, "And we're trying to keep it that way."
I'm like, OK, fine. That's good. You'll never, ever see an HIV commercial on national network primetime TV saying that.
Then the voiceover says, "It's been proven that herpes can be spread even without an actual outbreak." I'm thinking, OK. That could be like HIV. HIV can be spread even without signs or symptoms.
Then he says, "So I take my medicine because I'm trying to reduce the risk of transmission, and treat myself." I'm thinking, okay. That's an HIV message, too: Take your meds.
Then the voiceover, again, says, "However, herpes can be transmitted even without an outbreak. But if you have an outbreak, we recommend that you practice safer sex." Verbally, audibly, on this national commercial, the voice says, "We recommend that you practice safer sex." Then the kicker: A little subscript print on the bottom of the screen says -- and what they mean is, the Valtrex, but they say -- "Proven in heterosexual couples only." Only.
I'm thinking, oh, that's what it is. Herpes is a heterosexual STD. Heterosexual STDs are, first of all, absolutely acceptable. Quite normal. No big whoop. Stick it on a TV commercial. Put it during the Super Bowl. Nobody cares. Because it's a straight disease. It's a heterosexual disease ... according to them. Heterosexual couples in society are expected, and allowed, to have sex. Therefore, use a condom, because condoms will work. They will work. We will say that on TV: "Use a condom. It will work."
But HIV ... oh, that's a gay disease. We don't want gays to have sex. So we will, first of all, never have an HIV commercial, right? Because oh, my God. Now we're promoting homosexuality. We have to tell people that condoms don't work. Condoms are unreliable. Just say no until you get married, because HIV, homosexuality -- amoral, can't do it, against religion, bad, bad, bad.
Then I thought, well, how can you have something that is proven to work in heterosexual couples only? Does that mean that herpes knows if it's coming out a gay man, versus if it's coming out of a straight man? Or does that mean that the condom knows that it's inside a vagina versus inside of an anus? Or does that mean that Valtrex works in the DNA of heterosexual people differently than inside of a homosexual?
In other words, how can you prove that something works for heterosexuals only as a couple?
It speaks very loudly about our society, and it's pretty tragic, given that there have been no commercials about HIV.
No, of course not. You'll never see: "I have HIV."
"And I don't."
"And we're trying to keep it that way. So I take Combivir [AZT/3TC] and we practice safe sex. Proven in all couples only." We'll never, ever see that on national TV.
I think that, universally, no matter what color, no matter what sexuality preference, no matter what lifestyle, no matter where you live, or anything else in your life, the unifying factor is self esteem: believing in yourself, knowing that you love yourself and can protect yourself, knowing that anyone who doesn't believe that with you is not worth your time. Anyone who says, "I won't use a condom with you. I will force you to have sex, even if you say no. I won't give you all the facts. I will tell you one half but not the other," is not really interested in you as a whole person in the world. When people can understand that they really have to love themselves and look out for themselves and protect themselves -- and through that, they can protect others, and through that, they can love others, and through others, we can all, as a society, be whole again -- that's where my message is. That's what I'm looking at.
Well, Shelley, that was a great way to end this. Thank you so much for giving us your time and your story. It's been amazingly inspirational.
Thank you very much. I appreciate that. I hope that people in the Valley area will fill out the form at the valleyplus.org Web site, so that I can get in touch with them and tell them about all our social events, our parties, our networking.
Shelley Singer can be reached via e-mail at email@example.com.
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