October 12, 2010
Welcome to This Positive Life! We have with us Archbishop Joyce Turner Keller. Joyce, 60, never thought that HIV would ever happen to her -- she was a "good Christian" woman who devoted her life to her family, community and church. But then everything changed for the Baton Rouge resident when she was raped and later diagnosed with AIDS. This advocate and grandmother of three discusses why giving up was never an option, the dire importance of educating the faith community about the epidemic, and her own nonprofit for young people, Aspirations.
Can you start from the beginning? Can you describe how you found out you were HIV positive?
I got in a car accident en route to a black caucus event in Baton Rouge, Louisiana, in 2001. Leg became infected. Did not have insurance. Could not afford to see a doctor. And October 29, after many nights of aches and pains, I finally went to see someone, after sitting at the Earl K Long hospital, public hospital, after 72 hours, my name was finally called. I was offered an HIV/AIDS test and I was told that my immune system might be compromised. I didn't know what in the world that meant. "Compromised? Immune system? Me? How dare they?" And I was like, "OK, just want to know what's wrong." This was October the 29th, 2001. I turned 52, November the 9th, 2001. And for my birthday, I received a positive diagnosis for HIV, November the 14th, 2001.
What was your reaction? Were you shocked?
Actually, no. I was relieved because I knew something was wrong. Finally, I knew what it is. Since I know what it is, I now know there will be steps that I can take to fix it. The shame of it is that I knew nothing about HIV and AIDS. HIV and AIDS had nothing to do with me. I mean I'm a praying woman. I'm in the ministry and one of the things I've realized [is] that all the prayers didn't protect me against HIV and AIDS and I knew that's when I had to take another step.
So just to be clear: You had gotten in a car accident. And you were having a lot of pains and you weren't feeling well?
Right. I got in a car accident, earlier part of the year. And my right leg was damaged. Because the doctor couldn't see any visible signs of trauma or damage, he assumed that I was trying to rip off the insurance company. I didn't have money for an X-ray, so I was -- the state denied treatment because I went to a private physician. And as a result of that and my pride, the pain got worse and I just dealt with it. I ended up with severe blood clots in April of that year.
On April 24, I'm in the hospital. While I'm in the hospital I was only asked what I did for a living, how old I was -- that was it. I was not given an HIV/AIDS test then, even though we know that blood clotting is a precursor to being diagnosed HIV positive. The doctors assumed that I'm over 50, I'm not really having sex, so why bother? Nobody asked me about my sexual history or anything. I only found out after I became sicker and sicker.
What were some other symptoms that you had?
I was having fever and night sweats. But here I just turned 52, so I'm thinking I'm menopausal. I began to accept the diagnosis. I was tired. I was beginning to lose weight. But all this was attributed to my busy lifestyle. I was a full-time student at Southern University, raising my grandchildren, getting them off to school every morning. I was involved in community activities. I'm a minister. I'm a grandmother. I'm just doing so many things. I just attributed all that to just my being overactive instead of saying I might need to see a doctor.
Let's go back to when you found out you were positive. Was it a letter? Did the doctors call you in to talk to you? Walk us through that point.
I had a doctor's appointment for 4 o'clock on a Wednesday. My doctor said, "You know you're HIV positive?" I said, "No." She said, "Well you are." I said, "OK." And she sat there and I sat there. I guess she was waiting for a reaction and I didn't have one. So I asked if there was anything else I needed to know. She said, "Well, from now on you don't come here anymore. You go to the EIC." I said, "What is EIC?" She said, "The Early Intervention Clinic." I said, "And what is that for?" She just told me I was HIV positive. She said, "It's the AIDS clinic." I was like, "What's the difference between HIV and AIDS?" I didn't ask the question but in my mind I'm pondering it.
And she sits there and says, "Is there anything else you want to know?" I said, "I have a loss of appetite. I'm having problems with my throat. I'd like for you to give me something that'll stimulate my appetite." She says, "I can't do that." I say, "OK." And she sits there waiting for a response. And I looked at my watch and I say, "I'm sorry. But it's about 10 minutes after four. So can you please tell me if there's anything else I need to do because I've got to get home to take care of my grandkids." She was like, "OK."
So about six months later, I finally had a conversation with her. And I ask her, "Why were you sitting there so disconnected from me?" She said, "Because I was waiting for your reaction." And for me, I'm thinking that this woman doesn't care. It's just that she didn't know what to expect from me because she explained to me that oftentimes when she does give someone a diagnosis -- she said, "I've had men fall out. You're sitting there so calm and so serene. I'm thinking you're going to have a breakdown and you're trying to figure out how you're going to go home and take care of your grandkids." And I explained to her it wasn't that I wasn't concerned. It's just that I knew I had to prioritize. I had made a commitment to my grandkids that I had to keep. I promised them they were going to go to church that night to perform.
And I had to get that done. So about four hours after being diagnosed positive, after the kids performed, I was able to disclose to my girlfriends that I was positive.
And what did they say?
They cracked up.
Cracked up like?
Fell apart. And I'm like, "I'm the one that's positive. What's wrong with you?" So the first lesson that I learned as an HIV/AIDS-positive woman is that you don't tell folks at McDonald's. [Laughs.] You don't tell people at McDonald's that "I just got a positive diagnosis for HIV."
And then I realized that "look at how I have disconnected myself from the community." Because I was thinking, "I'm a minister. I should know about this. I'm someone who's supposed to be saving souls. And I've missed so many opportunities to save lives. I've got to do better."
At what point did you start getting care?
Immediately. As soon as they gave me an appointment to go to EIC, I went to EIC.
And this is in?
Louisiana. Baton Rouge, Louisiana. And I had a freshman, young girl, just out of college who was a social worker. And I think I almost gave her a breakdown. Her was name was Kelly Richner. I'll tell her name anyway. She knows I tell this story often. She's sitting across the table from me and she's trying to be very professional, very strong. And she's empathetic. She says to me, she took all the pertinent information, she says, "Well, how did you become positive?" I said, "I was raped." At that point, she didn't handle it well because she was expecting me to respond differently. And I kept telling her it's OK. But I didn't realize how traumatic it was for her. For her to sit there supposedly to help me and I'm one of her first cases and she's got to deal with the fact that I've been raped. And I'm like, "I can handle it."
So how many years before you were diagnosed had you been raped?
It was over five years.
What happened? You were at home? You were on a date?
Actually, I was going jogging on a Saturday -- Sunday -- It was a Saturday morning in the summer. I was preparing for prayer service. A group of people were coming in from Baton Rouge for a prayer service. We were heading to Gulfport, Mississippi, to do baptizing. There were people coming in from Baton Rouge that I had been ministering to. We were going in to do what we call "trouble the waters."
I decided to go jogging just before the people started to arrive because everybody was coming to my house and then we were going to do like a carpool all the way down to Mississippi from Picayune. That particular morning, I was running, I saw a car coming. The police light on it and everything. And I stopped running, then I saw the car. Because I'm at the stop sign, the car stops and asks what was I doing out at that time of morning. I said, "I'm running like I do every morning." "You're running alone?" I said, "Yeah, I'm safe because you're out here," thinking it's the police, I'm OK. And one of the things he says, "Well, maybe not." And I got this -- this fear came over me. Instead of running my regular, I double backed between the hospital and health clinic to go back home because I'm scared now, only to find that when I get back to my home, there's a tree and a bush right just before I go up on my steps. There was a swing on my porch and two rocking chairs. All I could tell you was that I don't know if I opened the door or he opened it. I attempted to put the key in. All I could tell you is I found myself in the fight for my life. As he raped me, one of the things that he told me was that I had taken a white woman's job. This man knew where I'd come from. He knew where I went to school. He knew that I had a brand new grandbaby. So as a result of that, I didn't know where to turn.
And I'm being raped and assaulted in my own home. The fight started in my living and ended in my dining room. In the fight, he ended up choking me and I passed out. I remember that. I do remember waking up. And when I woke up, I had no underwear. And one of the things that he did tell me, he said, "Well, if you report it. I won't deny I had sex. I will deny that it was rape." I'm a black woman from Baton Rouge that very few people knew. Who are they going to believe? A black woman from Baton Rouge or a white man from Picayune, Mississippi? So I chose to stay silent publicly. But ultimately, I did come out. Immediately, I told that I was raped. I told my prayer partners. But I didn't tell them until after the prayer services. Later that evening, I disclosed to some of my girlfriends that I had been raped. I did see a doctor.
And you had never seen this person before?
No, I did not know him. And to be honest with you, even if I saw him today, I wouldn't even recognize him.
You'd been to the doctor's office. At some point, you went to the doctor's office. Did they ever say, "Maybe you should get tested for HIV?"
No, that was part of the trauma that followed the attack. When I spoke with the doctor and he asked me who did it, and I explained to him what had transpired. He said, "Well do you know who it is?" I said, "No." He said, "Well the best thing to do is just get over it and not talk about it." He told me I didn't have an STD. He never mentioned HIV, never told me to follow up, nothing. I'd just become a flight attendant prior to that. And I was pretty active in my own health. I really wasn't practicing unprotected sex or anything of that nature because I had chosen another path for myself at that time.
Let me back up a little bit. So you had never received any counseling?
No counseling. Nothing.
You had kind of just told your friends and you tried to move on.
I just want to go back to when you started going to the doctor. You went to see the doctor. What was your CD4 count at that point?
So you had AIDS.
Yes, AIDS diagnosis.
Did you even understand when they told you?
I just knew that I was going to have to take better care of me. I was told -- and this is the disheartening thing -- I hate plastic plates and paper plates and paper cups. I detest that. I don't even like them in my home. But to be told, you need to get you some paper cups and paper plates, whatever. Let your grandchildren go back. Let your daughter take care of her children. And in my mind, this is 2001, and I'm thinking, "There's got to be a better solution. If I've got to distance myself from the people that I love, my support system, I need them to need me. I need a reason to keep on going. To say that I have to give that up, something's wrong with this picture."
Also, that's not correct information.
It wasn't. But that's the information I received. And I was upset about that. And I'll never forget. I was having trouble. I had diarrhea. I remember sitting in the dietitian's office and there were just these huge boxes, shelves of Ensure. I asked for some of that and she said, "Oh, you don't need that." And it turns out I was one of the people she should have been giving it to. You know, it was just misinformation, things you don't know. Then I realized then, "This is going to be an uphill battle. I'm going to have to fight, but I'm not going to fight alone."
Were you afraid you were going to die when they told you you had AIDS?
No. It never crossed my mind. All I knew is, "Here's an opportunity for me to learn something about something. Somebody else besides me has to be living with this disease." But what had happened? One of the reasons I didn't see death was because in the fall of 2000, my uncle's baby son, his youngest son, was dying from AIDS, needed to be baptized. I baptized him in his mother's bathtub because no other ministers would touch him. So the compassion right there began to grow. My compassion for people living with AIDS. Little did I know I was where he was. Spring of 2001, we funeralized him. And I just dismissed it from my life at that point because it had nothing to do with me. I had done my duty. I had baptized my cousin. I read his obituary. And I stood by his family. In the fall of 2001, here I am. Then I knew that if I hadn't known, I'm not the only who does not know. I knew that I had to be the face of and the voice of women living with HIV and AIDS.
How did you get to that point? A lot of people like to live -- There's so much stigma. Let's just be honest. You live in Louisiana. Stigma, sexual. A lot of misinformation. Louisiana. New Orleans and Baton Rouge. Did you have friends that were just like, "Joyce, don't do this. Don't go public"?
What did your daughter say when you disclosed to her?
She was angry, extremely angry. My mother didn't understand, the day I had went to her home to tell her that I had been diagnosed positive. My mother saw death. I saw the fear in her face. That, "Here is my oldest child dealing with something that I don't know what it is." I think I saw hopelessness and helplessness in her face. She didn't know what to do. There was nothing she could do to help me. One of my sisters became very angry and said to me, "Why you? I don't understand. You're the one that God has always used. You're the one that does this, does that and gets everything done. You're taking care of everybody." And I looked at her and said, "Could you do what I'm doing?" She said, "No." "Can you handle being where I am?" She said, "No." I said, "Did you ever stop to think that God is using me because I'm prepared for it?" And there was a lot of anger surrounding my being positive as opposed to somebody else. And I said to them, "If not me, then who?"
Were they ever afraid? Were they afraid for you to be in their home?
Yes, I dealt with that rejection. One of my sisters even told her grandkids, "You can't go over to her house anymore." But then there were others who embraced me.
How did that make you feel?
I say empowered because I knew then how necessary it was for me to step up because after I'd read the literature and began to do the research about this disease, I realized that ignorance and silence was what was really killing us. And I knew then I couldn't be silent. I knew then I had to become an educator. I knew then I had to become an advocate. I received my diagnosis in November. I attended my first conference in December. I knew what I had to do.
So now you're on medication.
How are you doing?
Absolutely wonderful. Overworking myself but I'm wonderful.
Great. And how often do you go to the doctor?
Every three months and whenever it's necessary. [Laughs].
Can you please walk us through the very first time you disclosed at church and also what is your role at church? I know you're an archbishop but at the church you disclosed, were you just a member?
I was a member, leader, prayer leader, just involved.
You're like the church lady.
Yeah, I'm one of those people. And what happened was it was coming up to National HIV Testing Day, and I'm looking around the church looking at all these beautiful women, girls talking about getting married. Teenagers that I had watched from children began to blossom and I knew those hormones were raging. So after communion one Sunday, the pastor asked, "Does anyone else have anything to say?" And I raised my hand. He said, "Bishop?" I said, "Thank you." And I looked around the church and I said, "This is June. We have a National HIV Testing Day coming up. And I think it's important that everybody in the church get tested because as a woman living with AIDS, I don't want anybody walking in my shoes." Oh, I can tell you it was quiet in the congregation. A lot of those other sisters that had been hugging me, after service, went to the right and children came from the left. And I knew then I could not bend the trees, but guess what, I could bend the branches. It was so amazing. I thought I'm just going to be hosting this little event. News media shows up. I find myself on TV. And everybody in Baton Rouge finds out that day that I have AIDS because they had a story.
So were they calling your house?
Yes. I got the thing with, "Joyce, I think I saw you on TV." I'm like, "What was I wearing?" They were like, "A white suit." "That was me." "But I think I didn't hear that right because I thought I heard you say you have AIDS." I'm like, "Yeah, I do." And my next question was, "Have you been tested? Because if it happened to me, it can happen to anybody." [Laughs.]
After you did the interview, as time goes on, what did the church, what did the congregation think? Did they not want you to come to church?
I am too vocal for that. They were not that bad. No, no. My pastor ended up on my website. I hosted the first Women and Girls HIV/AIDS Awareness Day in Baton Rouge. It received a proclamation from the mayor. I was embraced. I've got to give it to my pastor. He was very supportive. My doctor started helping me get to HIV/AIDS conferences. He supported me financially to get there. I had a good support system after that. My youngest sister stepped up and she just loved me unconditionally. And my children embraced me. My grandbabies were the wind under my sail and my purpose for succeeding, knowing that I could live with this disease. So death never entered my mind, even though it did some others.
I was talking to my mom and I'll never forget her asking me -- I was in the hospital, sick. I had to have a blood transfusion. And then she said to me, "Well, where do you want to be buried at?" I was like, "I got to be not listening to this call." I'm like, "Nowhere." I'm like, "What did you say?" She said, "Where do you want to be buried?" I said, "Nowhere. Because dying ain't nowhere near my heart." I said, "What I want you to understand is that I'm going to go back to the scripture. The God that you introduced me to, I'm hanging out with me. I want you to understand that I was told as a child that I would receive two reports, one from God and one from man. And I was asked a question. 'Whose report would I believe?' I believe the report of the Lord. I'm going to live and not die." And she said, "But you're not going to get any better." I said, "Wait and see." And the rest is history.
So once you got diagnosed, you were so adamant about speaking out and being in public. You even decided to do AIDS work and start your own organization.
I didn't decide to do AIDS work. I was forced to. And the reason I say I was forced, when I went to ask for help, I was treated with disrespect and not much dignity. And I knew then we had to bring dignity back to the word AIDS. That's why Aspirations was started. I was a different kind of client. I was professional. I was intelligent. I was knowledgeable. I wasn't what typically we were labeled as, as HIV-positive women. Usually, they want to say you have to be white, gay and I was none of those things, a drug user, sexually permissive. That wasn't me. I didn't fit the bill. But I didn't like the way I was treated when I asked for a hand-up instead of a handout.
And just the attitudes of some of the people who worked in this field toward people like me because I didn't come in with my head down. I went in professionally dressed, demanding answers to questions I was asking, I was denied the opportunity to go to a retreat for HIV-positive women because I didn't sell raffle tickets. That's not what I do. And my thing is AIDS qualified me to be a part of the program. HIV qualified me as a part of this program. I'm not selling any tickets. So when I was told I couldn't go and I was being discussed and another client came back and told me about that discussion.
I decided we're going to have to change this. So I started an HIV agency off of my social security check, borrowed 96 dollars to file my corporation papers. Took me six months to get my 501 (c)3, but guess what? We did it. And we're still at it. We're doing what we need to do.
So what's the kind of work that you do? Tell us the full name of your organization.
It's Aspirations Holistic Tutorial Services.
It's in Baton Rouge, Louisiana. Can you talk about the work that you do?
Basically, what we do, my god, we're all over the place. We started out as an HIV/AIDS agency to do testing and counseling and the regular HIV/AIDS services, inclusive of children, teaching and serving. But Aspirations has grown into an HIV/AIDS education agency and we focus on the fight against hepatitis, other chronic illnesses. We're basically youth-focused. Our focus is the youth because this is where we got to start, from the ground up. To save the next generation, we need to empower the next generation. We have a teen pregnancy prevention program, self-esteem building. Since 2000, we've had all of our students who have stayed with Aspirations, are not sexually active, and, no, we do not teach abstinence only. We educate our young kids. We empower. We mobilize. We encourage our young people to be the best that they can be. Our young people are certified in AIDS 101, group facilitation, cultural competency, outreach, recruitment and retention, conflict resolution. We're teaching our young people how to become responsible teens.
Sometimes parents don't want their children involved with HIV. "They're talking about sex? They're talking about HIV?" So how did you get parents to consent to saying, "We want our kids to know this information. We want them to be involved in what you're doing.?"
Because we started a summer program where we were bringing kids in, providing tutoring and then you give somebody something free. Kids stay with me all day during the summer. They sign consent forms saying their kids can be taught and these are the things your kids may be involved in. As long as you're doing it free from 6 o'clock in the morning to 6 o'clock in the evening and they're free? You got that. You get permission.
I want to talk about your work in black churches with HIV. There's been a lot of talk about AIDS ministries, how they're popping up everywhere, having faith communities ramping up HIV. How true do you think that is?
In Baton Rouge, I can't say that it's very true. They'll do it when it's funding attached to it, but the stigma is still there. I'm speaking very boldly because there is a coalition of ministers in Baton Rouge who ended up inviting me to an event, a meeting. I met the lead pastor who's leading this charge, but when I said I wanted to talk about HIV, he said, "You can come to the meeting, but you really have to be quiet." So it's being subtly done. They're not addressing HIV/AIDS openly.
They're doing it through health fairs. They disguise it in something else to slip a test in. But to openly really address it on the basis and the realm that they need to, they're not doing it. And I say they're not doing it, and hopefully they'll disagree with me by calling me out and doing it. Now there are a couple of churches who will allow you to do HIV/AIDS events, but those are few and far between. It is not on the scale that we need it to be, based on the number of people that are infected and living with this disease in our churches. I made the reference yesterday. We were on the panel. The reference of HIV and I alluded to what's not being done in our community by the ministers, who need to be getting it done, based on the platform that they have and the other people that they have on Sunday. Well someone in the audience made a statement about the white man who helped the churches on TV. And then I came back, "Well, we've got Eddie Long. We've got T.D. Jakes. And we have Fred Price." I started naming off ministers that I know, African American ministers that are on TV.
They are powerful.
They are powerful men on TV with people, millions of viewers every Sunday. But I have never seen one of them stand up and say, "Let's take up a collection for HIV-positive research. Let's provide some HIV/AIDS housing." I haven't heard that on TV, but I heard them say, "This is what we're offering. Send this much and this is what you're going to get for your dollars.
How has HIV changed you?
It just made me stronger, more determined, more focused. HIV has changed me in the way that I knew I had faith before, and now it's just given me this "I can" attitude. I don't believe HIV has changed me in a way that I don't continue to procrastinate. I know that there are things that need to get done and I don't expect anyone else to do it. AIDS has changed me in a way that it has caused me to look at myself in a different light, to just be honest with what I see in the mirror and just put that face forward.
One last question. What advice would you give someone who has just found out they're positive? When you come across women who are newly diagnosed, what advice do you give them?
To find a good support system. Be careful as to who they disclose to if they aren't ready for the world to know. I would tell someone who's newly diagnosed, "You don't have to tell anybody you don't want to know. It is not open for public knowledge." I would tell someone that you don't have to disclose. What I do and the way I do it is not the way everybody should do it and I would tell them to think long and hard about to whom they're disclosing and when they choose to disclose because if you disclose and you have a partner, your partner may not be able to handle it. You disclose to children -- If you disclose in families, sometimes children suffer the brunt of whatever it is you're dealing with, based on the stigma and discrimination that they're going to face on the playgrounds or what they hear from other people. I would just tell them to weigh every option and know that this is not just about them, but everyone around them is living with this disease that they're attached to.
But you're not scaring them from disclosing. For you disclosing was huge.
You felt that that was --
It was necessary. Because of the calling that's on my life. Like I said, I was in the business of saving souls. My god, I'm not saving a soul if I can't save a life. I needed to save lives before I could save souls.
What is some other advice you would give to newly diagnosed?
Get into treatment. Get into treatment. Don't be afraid to talk to your doctor. Become very proactive in your own health care. Make sure that doctor understands where you're coming from. Don't allow anybody or anyone to dismiss you and say that what you're feeling is not what you're feeling and that it isn't real. You be very proactive in your own health care. Make sure, make sure you know what it is, what medicines you're on, keep track of any side effects, write everything down. Just get into a good support group. Become educated. Go attend conferences, attend conferences. Get into different training. Just because you're HIV positive, you don't have to become an activist like me, but be aware that you're going to become a teacher and educator sooner or later.
And with that, we have to bring this interview to a close. It's been such a pleasure.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.