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 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.
"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.