October 12, 2010
Welcome to This Positive Life! We have with us Sharon Gambles. When Sharon was diagnosed with HIV in 1989, like many other people, she thought HIV was a gay white man's disease, thus she knew nothing about the disease. To make matters, during this time, there were very little resources for women living with HIV -- Sharon felt completely alone and lived in denial for years. This recovering addict, mother of three and out lesbian shares talks about her journey to sobriety, coming to terms with being HIV-positive and how she started to love herself again.
Let's start at the very beginning. What year was it? And what happened when you found out you were HIV positive?
It was September of '89, at Highland Hospital. I had just had birthed my daughter. After delivery, they asked me, did I want to take a test? And I was, like, "Yeah, I'll take a test." I didn't know what the test was for, but I took it anyway. About two weeks later, I was called back to Highland. A midwife called me in her room and said, "I want to tell you that your test came back positive." And I was, like, "OK, positive for what?" At that time, it wasn't called HIV. If I'm not mistaken, she said "GRID" or something like that.
So I'm thinking I'm going to get a shot. That's what I thought I was going to do, because I had had STDs before. So I thought I was going to get a shot, and it was going to be over. She was like, "Not only do you have it, but your daughter has it, too." So, again; there was no support. There was no emotional support for me. No one sat down and talked to me, knew exactly how I was feeling. It was just like a bomb dropped on me. I didn't know anything. I had no knowledge about HIV. It didn't apply to me, because I wasn't a gay male. But somehow I had this disease.
They said, "You have to also take your daughter to the Children's Hospital." And so that's what I did. I just disconnected myself from whatever was going on, that I had HIV, and just took my daughter to the hospital. I took her there for 18 months and then one day the doctor told me I didn't have to bring my daughter back anymore. At that moment, I didn't quite grasp why I didn't have to bring my daughter back anymore, because I was still sick.
When you say sick, what kind of symptoms did you have?
At that time, I didn't have any. But I knew there wasn't a cure for it. I did know that much. And so the doctor told me I didn't have to bring my daughter back, so I didn't. I was in denial for a long time. I just did not grasp what they were talking about that I had. I couldn't grasp it. I didn't understand. I just knew I couldn't get rid of it. That's what I did know. They told me there was no cure for it.
Just to make it clear to our audience: 1989 is ancient history in HIV. I mean, there was no outreach. I don't know when GMHC was founded, or any of the big AIDS organizations. But just about then; they were just looking at it. They said no women could get it.
Right. And it didn't apply to me.
They didn't have booklets, you know; and they didn't have phone numbers.
No. They just told me and sent me on my way.
And there was no real treatment.
No treatment. There was nothing at that time. And so I stayed in denial for many years. And I think around '90-something, they came up with AZT, or something like that. I was called in to get a prescription for that medication, which I was taking four times a day. I don't remember what milligrams it was, but I know it had to be pretty high, because I had headaches, real bad headaches. So I completely stopped taking AZT. I just stopped taking it.
How do you think you got infected?
I don't know. I can't pinpoint it, because back in '89, and in the '80s, I was an active drug user.
Yeah. I was shooting drugs and having unprotected sex. There wasn't anybody telling me about using no condoms back then and there. You know? So I was having unprotected sex to get my drugs. You know, I was sharing needles because they wasn't saying anything about that. So I couldn't pinpoint how I got it. I just know I was doing risky things at that time, and that's how I got infected.
What kind of drugs were you using?
Heroin. Yeah. I was using heroin. I was using heroin. I was shooting crank. I was just like a garbage can.
Why were you doing that, do you think?
Um, numb. Didn't want to feel. I couldn't put anything else on that. I just didn't want to deal. I didn't want to feel. And this was something to take me outside of myself. I didn't want to think about what was going on.
Did you have a really rough childhood?
Yeah. Kinda, sorta. Because the addiction was already there. Our parents were already using, were already in their addictions, in their disease.
So both your parents were addicts?
Yeah. My dad was a heroin addict and an alcoholic. My mom was an alcoholic. So I'd seen this. It was dysfunctional from the very start.
Wow. So you didn't really kind of know that you had a choice.
That was the way -- the coping method that you were taught.
Exactly. And for things . . . when you're a child, you know . . . not the wisdom that I have now. Going back, I'm clear today that my mom did the best she could, and my dad did the best he could. I'm not pointing no fingers or anything like that. But I still would want to say, to my acknowledgment, you know: what I seen, I saw. And I don't know about any other kid. But it kind of looked OK. Because my parents were, underneath, my role models. So it's OK. I think that's where everything took off for me.
And then when I got the disease, the diagnosis, what other way to do it than just not feel it, just numb myself? I continued to do that for a long time.
So you continued using after your diagnosis?
Oh, yeah. I continued to do things that I'm not proud of after my diagnosis.
You mean, you shared needles?
Oh, yeah. I don't think I was there. I know I didn't think like that, because I didn't know if people contracted the disease or how they contracted it. So, yeah. I'm sure I didn't think like that until later on; I found out that contaminated needles and this blood transmitted on me. Then I get to go into my head. It was a time where I was getting information. I hooked up with WORLD back in '90-something. And I was getting information. It was women, you know, so I really didn't feel alone then. I was going there all the time. But I still was using. But still, WORLD came into jails to see me. They came into prisons to see me. And so that helped. That really helped me.
Could you talk a little about why you were in jails and prisons?
Yeah. Bad choices. The substance that I used, you know . . . I didn't . . . I couldn't afford it, first of all. And so I did things outside myself. I sold my body. I stole at stores. I stole from my parents. I sold drugs. I did things way outside myself.
And why do you think you did that?
One, to protect my habit and two, because, again, I was in denial and I didn't want to deal with what was going on. I just didn't want to deal. I was a coward. I wasn't going to take no gun and kill myself, you know, because I had a child. So I wasn't going to do that. But I was like slowly committing suicide. I didn't want to just kill myself. So I slowly committed suicide by using drugs.
I think, you know, for whatever reason; I think I had got to a point where it had to be something better for me than what I was doing for myself. I just really, really had that gut feeling: This is not what Sharon's supposed to be doing. And for whatever reason, I made a choice after I got out of prison in 2001 that I didn't want to go back to prison. I knew how to go to prison. What I didn't know how to do was stay out of prison.
And so I had to listen. I had to get some help. I had to find out how to get back on track. And so I did. I got hooked up with a women's organization, which was Lyon-Martin, in San Francisco. And I got a case manager. This was an HIV-based clinic, too, for women. And I got in a program.
I got tired of using. I got tired of, you know -- I got tired of people coming out looking for me because I was missing doctors appointments. So people were actually coming out in the city, looking for me, to take me to go see my doctor.
So the messaging was -- you weren't looking at them as, like, parental figures that were bothering you?
No. I kind of looked at them as like my little angels. You know what I mean? Because they came in the pits of hell to get me so I can go see my doctors. So I can get my labs done. So I can at least try to get on some medication. This is not one, two or three times; this is like all the time.
So they were the heroes of your life.
Yeah. They seen something in me that I couldn't see in myself. And they continued to love me until I could love myself. They got me into the program and got me into medical detox first, so I could detox from my substance. After that, they got me in an HIV program for women, which was a year program. So my life took off after that.
The year program, does that still exist?
Yes. It's called Lodestar. It's on Treasure Island.
Do you live there?
No, not no more. You live there for a year; it's a year program.
Yeah. It's a year program. It's for women that are positive.
Who have a history of substance abuse?
Yes. Substance abuse.
So it's trying to get them off the street, not to know their friends anymore, just sort of start anew. Clean slate.
Right. Right. It's actually about self care. They really embed that in you, to put you first, to take care of you. And some good workshops, some good groups to empower women on how to love themselves. Because I didn't like me when I got here -- I didn't love me.
So what year are we in? You were diagnosed in 1989. And when did this happen?
So it's a long, long time.
But you were really, really lucky.
Yes. You know, I'm not the one that says I should have been dead, because I shouldn't have been dead. I really think that my higher power had a plan for me. This was his plan for me. It was for me to give back, you know, what was given to me.
And I do love to give women hope, to let them know that I've walked the same walk you walk. And just try to empower them on that tip: We still can become who we are. We're just women who can empower and get their children back out of CPS, who can get a job, who can pay bills and be a responsible, productive member of society. I know, because I've walked that walk. So I try to encourage women, regardless of what's going on right now, today. Storms come and go, but they pass. That's something I do know about storms, is that they pass. And you can rebuild. You have the opportunity to rebuild around here.
How many years in the end were you incarcerated?
Three. But before then, I did a lot of County time, a lot of Santa Rita time. Before they even built the new Santa Rita; I was in the old Santa Rita.
Uh-huh. So let's turn to your daughter. Tell me the story of what happened after the hospital, the time she was in the hospital.
So, yes. They told me I'd have to bring her back to Children's after 18 months. I heard it . . . but I didn't really hear it. So, three years, four years . . . by the time she turned five I had lost her to my mom. My mom took her. And I was concerned. I wasn't for sure. And I was always telling my mom, "Watch Karesha." That's my daughter's name -- Karesha. "Watch Karesha."
One time, I got clean enough to go back to Ann Petru, and I asked her what was going on with my baby. I said, "Ann, I wasn't clear. When you told me I had to bring my daughter back, what did you mean that I had to bring my daughter back?" She was like, "Sharon, your daughter is negative." Yeah. She came out my birth canal, which made her positive. But what happened. She thinks what happened between her being born and her, you know: she grew her own antibodies.
So, the fact is that 25 percent of children born to HIV-positive women [who are not on treatment] will be positive; so it's a small percentage. And all children born to HIV-positive women will test positive after they are born. But they can give them another test, or wait a year for the immune system of the child to be his or her own immune system.
That's what happened with my daughter. And so she's 20 years old; she's in college right now. And she's my best friend. I call her my miracle baby. Yeah. I got her back when she was 11. And I got my oldest son back when he was 13; and I got my little baby back when he was 5. So I got all three of my kids back in my life when I got clean. I've been working ever since I've been clean.
How many years is that, now?
Eight. I've been clean eight years, going on nine. And I've been working ever since I've been clean, with my kids. I'm a grandmother. And I have got my own place. I have my own car now. I have my own bank account. I'm in love with my kids. I'm an outgoing parent. You know, we bowl and we play, and stuff like that. Yeah. I'm just -- I'm grateful, I'm really grateful.
I still have rocks in the road. And I think I need to make that clear. I'm not 100 percent adherent to my medication. I tell my girls that. So I don't force you to take something. I've been taking medications for a long time, and I have my moments where I'm, like, not today. And it has nothing to do with me thinking I don't want to live, or anything like that. It's just that I have my moments.
And I tell my doctor if I miss a dose. I don't miss a whole dose. I usually miss an evening dose, but I don't miss the whole day without taking my medication. That's not good, either; don't get me wrong. But I have my moments. So I don't push adherence on clients, if I'm not adherent. I don't push anything on my ladies that I'm not doing.
So you've learned a lot of techniques about how to deal with stress, and how to deal with adversity.
Yes. Yes. Yes. And I have to put myself on the front line at all times. You know, I have to take care of me first. There's no way I can do anything else unless I take care of Sharon first. And I am really clear on that. And I really do a real good job of taking care of me, even when things are going up and down, in relationships, or with the children at school, or whatever.
I always take a minute and I breathe. You know, I always do that. Because I don't want to go outside of myself and do something outside myself. That's serious. Just get to the solution, Sharon: what to do; make some phone calls; use your support system; make a phone call; see your therapist; you know, talk to somebody.
When you first found out you were HIV positive, did you tell your mother?
I told my immediate family. I thought it was really important for me to tell my immediate family. And no one else needed to know. And it's funny, because they didn't even know what it was. They didn't, either. They were like, "What? What are you saying?" "I don't know what I'm saying. I'm just telling you that they told me I had something." "OK." And so, what I did, again, through WORLD and Rebecca, back in '90-something, when I educated myself.
Yes. I went and educated myself at WORLD. And I was able to go home and tell my mom stuff like, "You can't get it from a fork. You can't get it from me sitting on the toilet. You can't get it from my teardrops. You can't get it from my hug." And they was like, "OK."
They didn't think that you could get it that way, anyway.
No. You know? So that was the best thing that happened for me: I did not get rejected, where other people did. You know what I mean? My family continued to treat me the same way. They continued to love me the same way. They wouldn't spray no disinfect or anything like that.
How many people in your immediate family, or extended family, have HIV?
Just me. Just me.
Wow. So even though many of them were at high risk.
Yes. Yes. And I continue to educate my family. You know, I continue to tell my kid. You know, I'm a grandmother. And my son, he's been with the same person for a long time. I continue to still tell them to take tests. I continue to tell my daughter who has no kids, and [is] in college, to "Always protect yourself. You come first. You know what I mean? No sex ever without your condom, unless you're ready for a baby or ready for an STD. For real." I'm just keeping it real with her.
Do you think it's easier or harder to find love when you're HIV positive? What's been your experience?
My experience is that I am a very romantic, compassionate person. And I feel I deserve the same for me. I love me. And so I know how to love someone else. And so my search: I'm in a good relationship. Every relationship has little bumps and stuff like that, because you're trying to get to know an individual. But I also know that once I let someone into my life I have to remember that I'm carrying on somebody else's feelings, as well. So, me, when I'm in a relationship, what I do is, one, disclose.
If I feel the relationship is going to get intimate, I definitely do it probably the second or third date. Because I'll know if it's going to get intimate by that time. And I give that person a choice. You know, for me, it's not about the rejection; it's about that I give the other individual the choice to be with me. And I have been with negative people. And after our separation, they go get tested, and their tests come back negative. I'm a peer advocate. You want it to come back negative. You know what I mean? And so I know how to protect myself. I know how to protect my partner. My relationship has been good.
So you haven't had problems finding people.
No, I haven't had problems finding women.
Is it because you don't sit at home and feel sorry for yourself? I mean, so many people find that it's such a big challenge, they just can't talk; they can't bear to talk to other people about it.
Right. And I could not pinpoint on why is that. I mean, I'm still beautiful, inside and outside. I'm still a human being. I still need to be loved. Yeah, I know there are good vibrations, and stuff like that. But I want to be touched on. You know, hugs. I get hugs from my kids, my friends, and stuff like that. But a romantic, intimate hug is an entirely different type of feeling. So I want that. I've been that type of person ever since I can remember. And so I search for that, you know -- regardless if it's a romantic fantasy or not, I still want to be hugged by my partner. I still want to be kissed by my partner. I still want my partner to tell me, "I love you." I need those things. You know what I mean? It helps me.
I still need to laugh and get with my partner. We still need to have our funniest moments. You know? Where we can laugh and just think about them, and look at each other and laugh. You know what I mean?
Have you experienced a lot of rejection?
No, I haven't.
Do you think there's a lot of confusion about lesbian women and HIV?
There shouldn't be.
I guess the confusion is based on the fact that it's very, very hard, almost impossible, for one woman to give HIV to another. I mean, there used to be some stat -- like, two documented cases in the United States.
Well, actually, the ladies that I have been encountered with, we usually just sit down and talk. It's really important. We cannot educate anybody overnight; it's just not going to happen like that. It's just not going to happen like that. So I never tend to think something's going to happen because we're laying down next to each other and being intimate. I just don't think it's going to happen. But talking really helped educate, and showing facts. Knowing what you know really helps.
Do you find that a lot of people aren't aware of all this stuff, even today?
Yeah. Because if I wouldn't have told people that I was positive, they probably wouldn't have wanted to get with me, anyway. I'm clear on that, too. You know what I mean? And so, yeah.
But do you think that the women's world needs to be educated about HIV?
I always -- yeah, regardless of the lower risk, I still think so. Yeah. Regardless of the lower risk. Because we don't know. We can get erotic sometimes. We can be a little aggressive sometimes, you know what I mean? And things can happen, being a little aggressive. Everybody's not just real humble with sex. Some people are like rough with sex. And, yeah; I think it's really important, especially if one is positive and the other one is not.
Is there outreach going on?
Yourself. No. Not to my knowledge. Not to my knowledge. But it should be.
So it's all on you.
Oh, yeah. Yeah. And it's like, you know, I see -- you know, disclosure's big, too. I don't have a problem disclosing all over San Francisco. I've been on posters. So, you know, people see me, like, "You're the lady that was on the poster, huh?" I'm like, "Yeah. What do you want to know about HIV?" You know, it's not about . . . you know, all the other stuff. I don't want to go here thinking, "Oh, they're smashing me about my AIDS. They're stigmatizing me." You know what I mean? Don't even go there no more.
What tip would you give to someone who just found out they had HIV?
I would definitely try to get on the Internet and find some information around women, or find a women's organization, try to find and see what they know. Because what I do realize is that one agency might know something and connect you to another agency that might have more information.
The reason why I say that: because I had case managers. I had like five case managers just to be on my journey getting clean. And they all had different information. And they all helped me. You know, I got this information from this case manager, but this case manager knew how to get me housing; this case manager knew how to get me on SSI; and this case manager knew how to get me in therapy. You know? So I would definitely use the aggressive system and try to find women who have some information to help me.
Your story really tells, I guess, the story of someone who can still find a new life, even after all that darkness.
Yes. Change is reachable. It's scary. It's scary, because it's like walking into the unknown. Because when you get comfortable, when you live in a certain way, that's just where you is -- when you don't know how to live another way.
And then, when I crossed the fence, I saw. I understand now. I understand. You can vote when you're 18; I didn't start voting till I was 37 years old. You know what I mean? I'm a productive woman, because I can file for taxes now. You know? Wow. All these things. I can finally see how San Francisco looked. Because I was always looking down. I never knew that building was right there and it's been there all this time. Because now, my head is up. I got some self-esteem again. I got some integrity about myself. I got some respect about myself. So things have changed.
I don't look down on people, because I've been there. I know what it's like to be there. And so, yeah. Change is always scary. It's like walking into the unknown.
So what's your current treatment regimen?
And how did you choose it?
I didn't. My doctor did. Because I was on some other medication before then. And what happened for me was that she did a genotype test, and realized that something wasn't working. I was resistant to something. And she did her homework and came up and gave me the option. You know, she said, "Sharon, I did my homework around this medication. And I want you to know that's not working. That's why ain't nothing working. Your T cells are not going up; your viral load is staying where it is." My viral load had never been over 5,000. But it didn't go nowhere. It just stayed there for like a year. So I was still on the same medication and it didn't do anything. She did a genotype, and did her homework on the medication, which was Kaletra. And so she put me on Kaletra. She said, "It's your choice. I'm not telling you that you have to do it." At this time I was clean, so I did have choices. And I've been on the same cocktail for eight years. I've been undetectable for like eight years.
And what year did you start treatment?
When AZT came out.
Oh. So you were on AZT for all those years until the new drugs came out?
No. I was on AZT for like probably a year, and I stopped taking it. Because they didn't know what they was doing.
And so when you went back into care, what was your CD4 count?
My CD4 count was still kind of high, like seven-hundred something. And my percentage was like 32. I remember that.
How did you learn about HIV treatment?
Well, this is how I learned about it. I did a lot of workshops, right? I was going to a lot of workshops. I was going to a lot of trainings. And so every time we'd sit in a workshop, or something, a pharmaceutical would come in and he'd tell us about new stuff.
Those are definitely good places to learn. I just asked questions. "Will I have any long-term side effects? Do you know anything about those?" And nobody can ever give them to me because their research study was only two or three years, and then they put it on the market. You know what I mean? And so later on is when they start seeing stuff.
So I kind of educated myself. So I was like, "Well, I don't want to take Crixivan. I don't think I'm ready for Crixivan," you know? This was for me. And so, for a period there, I wasn't on any medication.
What happened? What happened to your CD4 count?
In that year. And your CD4 count just went a little bit down?
Yes. Just a little bit.
Wow. So you have a pretty good immune system.
Yeah. And for whatever reason, I don't know. I still say I don't know anything about this virus or how it's working in me. I just know that I've had it a long time. I just know I've really had it a long time. I done had it longer than most. And I'm just really grateful that things haven't happened. And I'm grateful for the medications, that I can live approximately another 47 years, you know -- and another 47 years. You know what I mean?
Do you have to do a lot of work to get women to trust the system, kind of? That the drugs do work and that you will help them? Is that part of what you do?
Yeah. That's not easy. That's not easy because I'm not the one to make the decision for them. I'm not a doctor, you know, or anything like that. What worked for me worked for me. What works for you is going to work for you. And I am not the one to tell you what's going to work for you. But I'm very clear on: What works for you, works for you. You know, my regimen might not work for you. You know what I mean? So I'm not the one to tell them that: "Do this and do that; take your medication."
Because that's the important thing. In taking treatment, you have to trust that it's going to work.
Right. And also, women have to trust us, too. I'm like, "Don't listen. Don't believe the hype." You know, "Don't believe it." You know what I mean? We can come in here and find out what's real, and what's not. So, yeah. I definitely come on through my ladies. It's hard to trust people. You know what I mean? I'm not a doctor. I'm not saying your doctor knows everything. Your doctor don't know how your body feels. Your doctor went to school for certain things. Your body talks to you; so listen to your body.
Great. Well, thank you so much for talking with me.
This transcript was lightly edited and features bonus material that is not in the video.