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This Positive Life: An Interview With Joyce Turner Keller

October 12, 2010

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Were you afraid you were going to die when they told you you had AIDS?

"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.'"

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"?

Yes.

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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?

Empowered.

OK, explain.

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.

Yes.

"Rejection from others has 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."

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.

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