By Bonnie Goldman
How did you find out you were HIV positive? Do you remember where you were?
It was really a coincidence. I was not expecting such a test result. I was still doing my research in anthropology in a rural community in La Paz [Bolivia]. Part of my research was to participate in the coffee harvest with the local people. While doing this, I got an injury on my hand. This injury then became more and more infected. So I went to the lab, because I thought I had a tropical disease, because I was in the tropical part of Bolivia.
My older sister knew I had been -- I am -- a rape survivor. I experienced rape in 1998. She suggested an HIV test, among many others. All of those came back negative that day, except the HIV test.
What year was this?
It was in 2000. It was a total surprise to me, because I didn't expect this test result. All the information I ever had on HIV -- which was not a lot, anyway, in Bolivia -- I never listened to. All the HIV information was referring to the so-called "risky" groups, referring to men who have sex with men, sex workers and drug users. In that context, I thought I didn't have any risk because I was not a member of these groups. I had a partner for nine years. So I thought I was not at risk.
I was also not prepared for the test. I then received a free counseling session. It was a real shock for me.
Who did you first talk to about this?
I talked to my sisters, especially the one who had the idea of doing the test. I blamed her. I said, "This is your fault, because I'd rather not know." But actually, it was really good that she suggested it, because I also was to discover that I [tested] HIV positive maybe three or four years after being infected. This gave me the chance to change my habits and to start treatment early enough; I never got sick, like being in bed. I think I have been HIV positive for nine years now. I never got so ill as to be in the hospital.
Many of my friends in Bolivia discovered they were HIV positive only in the hospital, and only when they were about to die. So my relatively early diagnosis was, at the end, an advantage. But at that moment, I couldn't rationalize; I didn't yet have an understanding of that.
I was very angry, because the information we had been given was that people who had HIV could die in three months. That's really what I thought was going to happen to me. I was so depressed. Even though my older sisters tried to help me and explain it, for three months I was isolated and really ... I didn't know what was going to happen until I decided to talk to my family. I decided that their response was going to determine what I was going to do. If my family ever rejected me, I was going to kill myself. After they responded with a lot of love, I decided to live.
I told them after three months. My father is a pastor in an evangelical church in Bolivia. He's very well known. I knew this was not what the pastor expects to happen to his daughters. We are three sisters. I am sure no father expects this to happen with his children. So I knew this was going to be a very difficult situation for them to understand, but I had to tell them, because I thought I was going to die. I wanted to explain.
Then my parents told me that they didn't care about what happened in the past, and how I got HIV -- they didn't ask me any questions. My parents told me, "You are our daughter, and we love you and we will love you, three months, six years, ten days ... however long you will live, we will be with you." That really changed my mind. Since that moment I decided that it was worth living, even with HIV.
Did you expect them to say anything different?
I thought they were going to be a little disappointed. I thought they were going to exclude me from the house, because, being in the context of an evangelical community, this could be really shameful for a pastor. I thought they were going to at least ask me difficult questions: How did you get HIV? What did you ever do to get HIV? They were so wise; they didn't ask me these questions. At the end, I told them the story, but in that moment, they just showed me love. I was really expecting that they would reject me, or at least confront me with my mistakes. I felt that I may bring shame to the leadership of my father, because he was the pastor. He is currently still the pastor. That was a really difficult time for me, but they were full of love, and that really changed the response. There was no judgment from them, actually.
Do his congregation and other people in the community know that you're positive?
That couldn't happen at that moment, because we all were afraid to do this. What could be the reaction of the congregation if they knew the daughter of the pastor had HIV and AIDS? Or AIDS, as it was only known at the time. We were very afraid that people wouldn't be able to continue trusting the leadership of my father, and there would be many complications. We didn't tell them for three years. We were not planning to tell them at all, but in those three years, I started to become a leader on the Bolivian Network of People Living With HIV and AIDS [RedBoL], and I started to become a public speaker, first on radio and maybe in some meetings, some small meetings.
At some point I knew I had to confront the issue of speaking publicly about my HIV. I had started speaking on TV, because I was already a leader. We had a family meeting, and we decided that we were going to tell the congregation in 2003. If they didn't react as we expected, we were going to say that they were not real Christians, because a real Christian would not reject. If you follow the example of Jesus, there is no space for rejection, but only for love. We told them, and the response of the congregation was so amazing, something we never expected. The congregation, from that moment on, became the main support of my family and me; they were amazing and they really showed us the love of God.
Did they want to know how you got infected?
I told them in the beginning. I didn't try to keep any secrets. I didn't want to lie. I think for me it was more complicated to have some people who knew I was positive and other people who didn't know, and maybe some people who knew how I got HIV. That was more stressful for me. So I decided I would tell everyone how I got HIV, and I would start telling them that I did get HIV through sexual intercourse -- as 90 percent of the HIV-positive people in the world did -- and if they then wanted to go away, or they wanted to stop being my friends, or they would reject me from their community, then it's their problem.
I decided to do that, and people reacted very well, because when you bring the truth, there is also life. They couldn't deny their own risk, the congregation. Everyone that I talked to afterwards didn't have anything to judge against me, because they were also in those situations of risk; but they were lucky enough not to get HIV. So instead of judging me, people started to support me so much. So I became more and more well known in the media in Bolivia, and internationally, after that.
When you did tell the congregation, did you just stand up in front of the congregation? How did you do this?
I did, after the main message in the service. We talked to the person who was going to offer the message, the meditation, that day; we asked him to prepare a portion on how Jesus treated a woman that was found in sin. [In the story], everyone wanted to stone her, and Jesus said, "Who of you that wants to kill this woman are free of guilt?" Then everyone ... nobody would [stone] her anymore.
We asked him to prepare a portion on this, and after his preaching, I just stood up in the front of the church and I told them, "I have something to tell you." I told them how I came to be in this place. I told them I was living with HIV already three years. I told them that I considered that God, if I had made any mistakes, He did forgive me. I told that I needed their support. If I was bringing shame to the congregation by saying publicly that I am HIV positive, I told them to forgive me, but that is something I had to do. There was no information, and people were dying in Bolivia who didn't have medication. To help these people, I had to be public about living with HIV. I told them that as soon as I started to work with other people living with HIV, I realized how much this could be a mission that God gave me, based on my mistakes, mainly, based on lack of information and ignorance. It was a mission that I was bringing good outcomes from. The congregation said, "Will you forgive us? We were so indifferent with your needs. We didn't ask about your health. We are not working on HIV with our congregation. We have to repent, not you." That was very, very surprising for me and my family.
Wow! What a moving story! How big is the congregation?
It has about 200 members. It has similar congregations in different neighborhoods in the city. So at the end, all the congregations in the other neighborhoods also knew because we sent them my testimony. They all read this and they all were aware of this, and all of them reacted with love.
Wow. Do you think this caused many people to get tested for HIV?
I don't know, because people are still, in Bolivia, thinking that maybe this "won't happen to me," and there is so much denial, even in the government. No. You don't listen to anyone speaking about HIV, except us -- those who are already living with HIV. Our president, our leaders, ignore the issue of HIV and how important it is. We are in a total denial right now in Bolivia. We have started to challenge that with our congregations. Some of them decided to have a special workshop on HIV and AIDS. They said they needed to learn about this. Other people wanted to work on HIV prevention, and others are working with people who have HIV.
Surely they cannot be the same after listening to my story, because I was a daughter of the pastor. Since I was born, the congregation was in my backyard. If anybody had reasons to disobey God's voice, if you want to call it that, it was not me. That's how God's grace operates: He precisely is able to forgive us everything. That's why my testimony is called "Grace for Grace" -- how I did receive grace from God, and I only understood what his grace was about when I got my HIV-positive test result.