January 3, 2011
Welcome to This Positive Life! We have with us Patricia Kelly. In 1985, Patricia, a then-31-year-old IV drug user, learned that she was HIV positive while serving time in a South Carolina women's correctional facility. Convinced that she was going to die because her doctor told her as much, Patricia hid the fact that she was positive and spiraled deeply into her drug use. This mother of three and recovering addict talks to us about her 20-year journey living in and out of the prison system; overcoming the cultural stigma that stopped her from seeking the mental health help that she needed; and the relief and peace that being able to disclose her HIV status has brought her.
When were you diagnosed with HIV?
I was diagnosed in 1985, back in the time when it was the hysteria.
Long-term survivor, you are.
Yes. I'm a conqueror. Yes. It was a difficult time, you know, because when the doctor diagnosed me, he had a mask, gloves and a gown on. And he told me I was going to die. And he told me not to tell anybody that I was positive.
Where was this?
At the Women's Correctional Facility in Columbia, S.C. -- I was incarcerated. At that time, they tested you without you knowing you were being tested. Just the fact that you were an inmate; you were tested. He told me not to tell anybody, because if I told anyone they would not want to be around me. He also told me I was going to die and I believed him.
How long were you incarcerated?
Nine months. But at first, I didn't believe him. I wanted another test. So I got tested again and it still came up positive. Because of the hysteria and everything about it, I kept it to myself for nine years. There wasn't any counseling or anything back then. But, physically, in all these 25 years, I've never had any signs or symptoms. So had I not been tested, I would not have known. But emotionally, I've been to hell and back.
When you first heard the words "HIV," how did you feel? I know you said you didn't believe it, but when you got a second confirmation, saying, "Pat, you have HIV," what did you think?
I thought I was going to die. I thought my life was over. I wasn't married and thought I was never going to get married. I even believed that I couldn't have sex again. I was, like, oh, my whole world has come tumbling down.
Did you realize that you were even at risk? What did you know about HIV? Did you think it was just a gay men's disease?
I knew nothing about HIV really. I had seen it on TV, here and there. But I did think that it was only for gay men. And then later on, after I was tested, they started talking about IV drug users. So that was another facet. I was, like, "Oh, my!"
So when you left jail, what did you do?
I lived my life like I was going to die tomorrow. I took risks at doing crazy and wild things. I really got on a drug spin, and alcohol, and just taking outrageous chances. And I never told anybody. But I continued to be involved in the drug world -- which I knew, even if they knew, they would have accepted me. Because it's what you got that gets you in, you know. But I never said anything. Maybe towards the later years, as I realized I wasn't going to die, I started to share my HIV-stratus with some of my drug friends. They was like, "Well, if you knew this, why did you do that?" You know, that I put them at risk.
And I'm like, "Even if you had known, it wasn't going to make a difference; because when we out there, we out there."
How long had you been addicted to drugs?
I did a life sentence in jail on the installment plan. And back in the day, a life sentence is 20 years. So I did drugs on and off for about 20 years.
Do you remember the first time you did drugs and which drugs were they?
I guess that would be alcohol.
And how old were you?
I was a teenager, and it was right after I watched my first love commit suicide. And so, basically, I started drinking. Then I went away to college, and some people introduced me to marijuana, and cocaine. Then I dropped out of college and started doing drugs a lot. Later on I got focused and went back to college and got my degree. But the year after that, I was incarcerated for writing bad checks-I didn't have any money in the bank.
It was during that stint in jail, [I found] out that I was positive. And before that I had interest in going on to grad school and doing this and that. After that, I was like, "It's over."
While you were doing drugs and you were kind of in and out of jail, what did your family think?
I stayed with my family. I'm originally from New York.
Which part of New York?
The Bronx, but I grew up on the Lower East Side: ABC Town. And a lot of my activities took place away from home. I went to Connecticut to hang out, or I'd do things in South Carolina, so that my family -- or anyone who knew me -- couldn't point and say, "Yeah, I saw your daughter over there." I basically tried to keep it away from my family.
They had thoughts and ideas, but they couldn't say that I was actually a drug addict. They just thought I was out there with men, or, you know, my kids' father -- stuff like that.
So, the drugs and alcohol: Were you doing that to self medicate?
Yes, most definitely.
What were you medicating yourself for?
I didn't want to feel. I didn't want to think about dying. In 1991 my brother died from AIDS. That's when it really hit home. He came to South Carolina to live with us. That's when my mother and father got educated about the disease. And even though I had been positive for a number of years just like my brother, we had seen each other and I had gotten some idea, but we never spoke about it.
You know, he was also an IV drug user, and every now and then we used drugs together. And he would be like, "You can't use my work kit." He was more protective in ways later on that wasn't a part of him in the beginning.
Later on, I was incarcerated again and they allowed me to call him when he was in the hospital. I said I was going to be praying for his recovery, and praying for him; and he said he was beyond prayer. That's when I actually knew, without us even having the words. Because I knew that he had the feeling that I had -- that it was going to be all over.
What year was that?
We had that conversation in 1989, but he died in 1991.
I just want to go back just a little bit. You were diagnosed in 1985. You got out of jail, and you kind of went in and out?
What was the year when you left jail and you never went back?
So this is only seven years ago.
So you've been in and out of prison for almost 20 years.
Yes. Life sentence on the installment plan.
And so in between going in and out -- this if fascinating to me -- how did you just manage? You didn't tell anybody you were positive?
Oh, for nine years, I kept it to myself. And then I went into recovery from prison and then I told my counselor. She started speaking to me about going to a support group. I was very reluctant. I didn't want other people in the house to know I was positive. But she told me I wasn't the only one in the house. I started going to the support group. And that support group saved my life. It gave me my life back.
What was it like?
This support group was run by a lady called Miss Elsie Cofield, in New Haven, Conn. -- it's now called AIDS Interfaith Network. This support group had the most loving and caring people that I had ever met.
I met other people that were positive, like me. They would go around and they'd tell: "Hi. My name is such-and-such. I've been living with this for so many years." And you know, just issues that I had; I was able to take them to that support group and they told me how to live.
They told me how to disclose. They told me that if you disclose to somebody and they turn their back on you, they were never your friend to begin with. And with boyfriends -- if they really cared for you, it wouldn't matter. Most importantly, they educated me and gave me so much hope that I finally got it in my mind that: I ain't gonna die. They said I was gonna die and it is nine years later, and I'm still here!
But even that didn't stop me doing drugs. I was getting hope from my support group, but I wasn't where I needed to be in order to recover from drugs.
How did you keep your body from breaking down? Did you have any opportunistic infections?
I've never been sick.
You've never been sick?
I've never had any symptoms that would take me to the doctor, and for the doctor to say, "Maybe we need to test you for HIV."
Even though you'd gotten the support and you were feeling better about yourself, you still weren't in recovery. What got you to the point that made you really commit to recovery and where you went, "I don't want to do drugs?"
I have tried over the years and there had been times in my life, like during my pregnancies with my kids, when I was clean. But I think my last incarceration did it. I had been incarcerated for a lot of years, but I had never been a person to stand down or let the time get to me. I did all the positive things to keep me educated and informed and to build myself up. The last time I went in 2000 -- from a case that stemmed from 1998 -- my sentence was seven-and-a-half after five, suspended after three. So after doing the three years, I was released, but then I violated my probation and I had to go back.
But when I went back in this time, and I started getting disciplined more, and I realized that the new set of the guards were off the chain. They really treated you like you were a dog. The prison system itself was one thing and now this. That's when I said, "I'm tired of this. I can't go back."
Also, while I was incarcerated, I grew spiritually. We had a wonderful reverend. And I started reading my Bible and getting connected, and spending time on a spiritual level. When I came out, I stayed connected.
Let me take a step back. Did you ever start taking medication? You know, when the cocktails came out, or when antiretrovirals came out in '96, were you on -- did you say, "OK, sign me up for treatment?"
No. For many, many years, they tried to get me into treatment, to take medication. Because I watched what the medicine did to my brother, I was adamant about not taking it.
So he was taking AZT.
Right. Well, I don't blame you for feeling that way. I don't blame you for feeling that way.
I mean, he died with dementia, wearing a diaper and, you know, so many things going wrong with him. And just being there, taking care of him, I was in the mindset that they were using people as guinea pigs to test the medicine -- they really didn't know if it would work or not. And then when the cocktails came out, I said, "OK, more guinea pig-ism." But then in 1998, when I got the diagnosis of AIDS, it sort of really hit that maybe now I was finally going to die. And if I lived all this time without the medicine, maybe if I take it, I'll live longer.
So had you ever had a CD4 count done?
Oh, many times. It was always in the 500s.
So you were relatively OK.
So you thought, "Hey; I'm doing well." Until they told your disease had progressed to AIDS.
I think what caused my CD4s to drop to 98 was because I was extremely out there, doing drugs. I wasn't taking care of myself at all. And then the stress of being arrested, you know, again and again. It played a part in my immune system coming down.
The doctors were concerned and they talked to me. They told me, "Well, you know with 98 T cells, you can get this; you can get that. And being here in the prison, where you are really open to a lot of things, we really can't protect you." And so I said, "I want to live for my grandkids." I had missed the opportunity with my own kids. So, maybe for my grandkids I'll be there a little longer.
Had you been kind of estranged from your children? Did they come to visit? Or did they kind of just say, "Mom, we can't do this anymore."
Well, my parents raised my kids because I was like in and out of jail and prison. So I really lived at home, but I stayed in another state, you know, to keep everything hidden. I'd come home to rest for like weeks at a time. So I was there, here and there, except for the youngest one.
And so when you got the AIDS diagnosis, you were like, "OK. I'm going to start taking medication." And so how quickly after medication did your T cells start to get higher?
Actually . . .
Or did they? Did they go lower, perhaps?
They didn't go lower. But they haven't actually ever . . . Matter of fact, this past doctor visit, my T cells were 396. I've been in South Carolina since 2003. And last year was the first time my T cells had come up in the 300s.
In over 10 years?
I must be honest and say that I was on a medication regimen but I had my own regimen. So I took the pills like I thought they should be taken. By doing that, I am currently on my third regimen.
You were resistant to some of them?
Yes. And I told them when I started taking medicine that the only way I would take medicine [was] if you would give me something that I will have no more than two pills to take a day. And so they got me on, um . . .
And this was 10 years ago?
Yeah, in '98. It was two pills in the morning and two pills at night. So that was the easiest. Because I'd heard stories about people taking 35, 50 or 60 pills. I wasn't trying to take any of those pills. I don't like swallowing pills. So, two, I could do.
It got to the point where I took two in the morning, and never remembered at night. Or, I'd get up in the morning and get busy, and take them at night, and forget the morning.
So you just had it all . . . not together.
If you could go back and change that, would you have done it differently? Would you have really adhered to your pills the way that the doctor wanted you to?
Yeah, I think I would, knowing what I know now. I mean, because, I was like, I'm feeling good. I'm not sick. It ain't broke. Why fix it?
I think a lot of people feel that way. They feel like, "Oh, I can skip a dose. Oh, I'll be OK." What people don't realize is that, you know, if you keep doing that you're going to grow resistant, and then you have to keep going down the line. And once the line's up it's going to even be harder. But you're still doing well now?
And are you adhering to your medication now?
I'd like to say most of the time.
So you're on treatment. You're feeling better. So this is the first time you say your T cells have been . . .
Coming up. Yeah. Yeah.
So this is the first time they have passed 300 in a long time?
In a long time, right.
So you basically have been living with AIDS for a long time.
A long time. Yes. And I've been undetectable for a number of years. For about three or four years, I've been undetectable.
Let's talk about when you got clean. So you got out of prison in 2003?
And so when you left prison, what did you do? Did you get clean in prison before you left?
Well, of course, I was clean in prison. I came out and I went to a transitional house. And the transitional house had a lot of stipulations like you had to do drug groups. So it was basically forced on me, but I wanted it. And I realized that I had to want it more than life itself, if I wanted to stay clean. In the process of staying clean, God was putting people in my life, and different things were happening. Good things. I started to accept that I deserved those good things, and I wanted more.
So for a while you didn't really feel like you deserved good things?
Because I was the worst of the worst. I had this disease that really is like a death sentence. And so I believed that I was the walking dead. What hope do you have when you're a walking dead? Yeah. I was a zombie in a human body.
And I got that attitude because the doctor gave me that attitude when he first diagnosed me. I believed him. I believed I was going to die, all these years later. I'd like to see him, because I have some words for him. I'd like to tell him that God has the final say.
You're very lucky. The reality is a lot of people did die that were diagnosed in 1985. So you're extraordinarily a very lucky, a lucky person.
I like to say I'm blessed. And I know that it's only through God's blessing, his grace and his mercy. Because I didn't do anything different than [what] some of those people that are dead had done.
When did you start disclosing? Because for so long, you lived in silence.
I started with my kids; I told my son when he was 11 years old. I didn't want to die and have people come, and, "You're mother had that thing, you know." So we had a close relationship, and I was able to tell him.
Now, my daughter, who was, like, 16 at the time: I didn't tell her till she was grown, because she's a drama queen. And my youngest son: I don't think we ever had the conversation. It's just that I was, and, you know . . .
Right and in 2003, when I moved from Connecticut to South Carolina, I started getting involved in things. I became the consumer advocate for the state, and I did presentations. I started speaking out. But I was aware that my daughter was in high school, so I tried to be mindful of what she would think.
I did a presentation one time, and somebody put it in the newspaper. I had no idea that it was going to be in the newspaper. I was just talking about my brother's death, and how that affected me, and how many years I had been living with it. The reporter never asked for my permission, and nobody told me that it was going to be in the paper. So I had a whole lot of mixed feelings about that. But then, as I look at it now, that was my stepping stone to where I am now. So I stay in the newspaper now.
How do you disclose to people around you? Do you date?
I'm married. I got married in 2000. My husband and I dated for like seven years, with me in and out of prison. When I came out in 1994, I hadn't even disclosed to him. So, in 1994, when I went to the support group, I had got my own place in New Haven. And he was there, and I was talking about us moving in, and stuff, together. But before I could do that, I had to disclose to him.
The support group helped me. And I disclosed. It was a very dreadful night. He said, "Well, I'm going to get my stuff. I'll be back." I moved into the place. I had no phone, no contact. The next morning, when I got ready to go to work, he hadn't come back. And I was, like, "He's gone." But he couldn't get to me or tell me that he would be coming later that afternoon.
Oh, so you just thought he just left.
But later on that afternoon, when he came back, I was like, "Aahhhh." I started to breathe. And with him knowing and me knowing, we talked about it a lot. And I continued to do my support groups. I asked him to come, but he never did go with me. He was also a person in recovery -- we met on the street. He's been in recovery longer than me because I flip-flopped for a while. And he's always been encouraging.
Something I thought would never happen did: I got married. And, wow, it's 10 years. Yeah. He lives in Connecticut. And we've had our ins and outs, our separations. But emotionally we are one. So he's just waiting to retire to come to South Carolina and be with me.
Let's talk about the kind of work that you do. Do you work in HIV?
Yes. I founded A Family Affair. It's an HIV/AIDS ministry at my church, Victory Tabernacle. We started out as a support group -- a support group that was different, in that it was for persons affected and persons infected. So we had a lot of people who had family members who had died and had no place to go, or no one to talk to them because so many of the agencies are for persons living with.
It's been good. We're into our fifth year, and we've grown. We do community outreach, we have a speakers' bureau, pass out condoms and speak wherever they want us to speak. Recently, we've gotten involved with the National Association of People With AIDS (NAPWA), and Common Threads, a women's group of South Carolina. We help with testing on awareness days. We just do a gamut of things.
And so you started this on your own?
Because I knew that idle time is the devil's playground, and I didn't want to go backwards. They already had the Minority AIDS Council in the church. And once I hooked up with Miss James, I started talking about things that I needed for myself. I knew other people, positive people, in South Carolina could use it.
In the beginning, a whole lot of people that came to the support group were people that were not originally from South Carolina. You know, they came back to South Carolina from New York, Virginia and other different places. Even now, it's still hard to get people in South Carolina, who are born and raised in South Carolina, to come out to different things, because of the stigma. But we're working on it.
So you're involved in the church, and you're living with HIV; and at some point, you had AIDS. How did people respond to you? You know, the Church isn't always necessarily the most welcoming to these kinds of issues.
My pastor has always been welcoming of HIV. He allowed the Minority AIDS Council to have a spot in the church, without paying. And now we have the USC/Claflin EXPORT project in there that focuses on HPV and HIV. He was the open one.
But I can tell you: The congregation and the family of the church people are still not open. And if you ask them about the HIV/AIDS ministry, they know they have one, but not too many of them volunteer or come by. But it's getting better. You know, we're starting to get younger people involved and wanting to do things with the HIV/AIDS ministry. We've had students come from the college. Because we have two historical black colleges in Orangeburg: Claflin University and South Carolina State. So I have student interns come and volunteer, and do things with the ministry.
The faith community has a blind eye when it comes to HIV and AIDS. But I try to get to as many churches as I can, being a part of Project Faith on the South Carolina HIV/AIDS Crisis Task Force.
How does this work make you feel? Because you've come a long way.
Yes, I have.
And so how does this make you feel about yourself?
I feel great. One of the things that I realize is that when I serve, when I help, when I do something for others, I'm doing it for myself. It's so rewarding that it's all I want to do.
I run the HIV/AIDS ministry in my church; but there's no salary. I'm just volunteering, doing this, because it's part of my life, what keeps me going.
I think it's amazing. You work with young people, older people. What's that like?
Well, recently I've started working with the seniors, and doing condom demonstrations.
And when you mean older, what do you mean?
Oh, I'm talking about 65 years old all the way up to 90. I do these demonstrations in the town of Bowman, S.C.. They have the senior center where the seniors come in for lunch. And so I've had an opportunity to educate them on HIV during those times. And that's the town that my parents are originally from. So I disclose to them, and I talk about HIV and how members in their family may be positive, but because of the way you treat them or the way you talk about the disease, they would never tell you. The condom demonstration for the lunch group was fantastic.
Did they get it?
After the condom demonstration, I had one man demonstrate to the people that came in late. And he was fantastic. I was, like, these seniors got this better than the kids. They got it. They got it. And I told them that the importance of me teaching you, is that some of you may say you don't need this, and so on and so forth. But our youth will come to you before they'll go to their parents. And if you know how to do it correctly, you can show them, and they will listen to you. You know, because they see you as the elder. So it's been real rewarding. The town is still talking about it.
And so this was just to educate them to teach younger people, but also educate them for themselves. And what kinds of questions did they ask?
They wanted the condoms and female condoms. They asked some personal questions and I realized that in South Carolina, when people ask you how you got HIV, they really want to know who gave it to you, so they can say such-and-such-and-such. You know. But they do ask, "Well, how'd you get it?" And I usually like to answer that by, "It's not important how I got it if you know the modes of transmission," and then I go through that. And then I say, "What's important is what I'm doing with it now, how I'm living my life." I make sure to tell them about how destructive my life was when I first found out. I had to get a positive attitude to live a positive life. They also ask questions about where they can get these condoms, and where they can get tested. And I like to give them all that information.
How has HIV changed your life?
Well, it's changed my life in many ways. It's shown me how to deal with grief and despair, hopelessness. It's shown me that I need to embrace my mental issues. It's given me a purpose. And it's given me love and compassion for my human man.
Have you been to counseling?
Oh, yes. I have many years of mental health and medication. Even before I got my HIV -diagnosis I had attempted suicide at age 16. I was dealing with a lot of emotional stuff, but in the African-American culture, you don't get help for those things. You better get over yourself.
You better pray.
You better get over it. You better get it together. You're not supposed to be crying. You're Superwoman. This is what black women do.
Yes. Yes. So at the age of 16, I attempted suicide. I had no knowledge or anything about HIV, which came 20-or-some-odd years later. But that's when I knew, you know, the sad moments and the depression. And then soon after that I watched my first love commit suicide. So I stayed depressed for a number of years.
Going completely undiagnosed?
Yes. And it wasn't until I started to deal with HIV that I started to go and get mental health counseling. Yeah.
Well, I think that's incredible. I know a lot of people that there's like the stigma on AIDS, the stigma on HIV, the stigma on mental issues, the stigma around you seeing a counselor. There's even stigma around going to a support group. "Why you need a support group?"
Yeah. Yeah. And when I moved to Connecticut, I had some really good therapists and everything. They helped me work through some things. But when I came to South Carolina, in two years, I had five therapists. And I was like, you know what? If I wasn't secure in myself that would have made me more insecure.
Thinking like you're really crazy, or something?
Yeah. You know: what's going on that I can't keep anybody? Or: why I got to start my life story all over again with a new person? That gets really tiring, you know? And it makes me feel as though I really didn't matter. But because of that situation, I basically weaned myself off my [antidepressants]. I started to rely more on Jesus and my faith. And I feel as though the service that I do helps my mental status.
What advice would you give to people who just found out that they were positive?
Well, first I would say, "Look at me."
Twenty-five years living with this, and I am not dying. I ain't going' nowhere. You can live. It's not a death sentence. You need to take care of yourself and do what you need to do for you. And I'm not even going to say do what the doctor tells you to do. Sometimes the doctor doesn't know what this body here is feeling. You know, you've got to be able to advocate for yourself, and get what you need done for you. But please, please, please: stay around positive people. Because negativity will kill you.
So with that, we have to bring this interview to a close. It's been such a pleasure, Pat. Thank you for stopping by. And have a great day.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.