HIV Positive and Doing God's Work. 3/8/10

An Interview With Christo Greyling, an HIV-Positive Minister

The Body

The XVII International AIDS Conference (AIDS 2008) is a magnet that attracts thousands upon thousands of HIV-positive people, activists and community leaders from all walks of life and all parts of the globe. We were fortunate enough to meet a few of these people and talk to them about their perspectives and their experiences. In this interview, Bonnie Goldman talks with Christo Greyling, a Dutch Reformed minister living in South Africa, about his journey and his efforts to reconcile HIV with religion.

Wow. So you're a long time survivor. Have you been on treatment since the treatments started?

I was one of those people, I think, in 1990, who was put on AZT [Retrovir, zidovudine] as a monotherapy, and then the CONCORD study came out and I quickly realized that I probably had built up resistance a long time ago. And then I decided that I'm not going to stay on a drug that makes me feel terrible, so I took myself off the drug at that stage, which probably was already long after resistance had already started to develop. I had my first real serious AIDS diagnosis at the end of '97. I had to go on trial drugs from about June 1998; I started on a combination of drugs. I couldn't afford it at that stage. In South Africa, it would have cost me more than a month's salary just to afford the drugs. The only way was to go on antiretroviral trials.

Unfortunately, it was not a good trial. One drug failed very quickly. There were no salvage drugs available. So I started [treatment] again [only] when my viral load started to show that I needed it. In fact, interesting enough, I didn't start to use the drugs because I needed it. My wife and I got married. She married me knowing that I'm HIV positive, in 1988. And of course, we couldn't try for children. Because she was negative, we wanted to keep her negative. Then when research started to appear about how the viral load correlates with transmittability of the virus, we started thinking about having children. So I started on antiretrovirals specifically to have children.

Do you have children now?

Yes.

Oh, congratulations.

We have two, and my wife is still negative. So, yes. I'm very thankful for that.

That's amazing. How old are they now?

Five and three.

So you have your hands full.

Yes.

Tell me about your religious affiliation and how this interacts with living with HIV.

I'm a Dutch Reformed minister. I studied theology and worked in a congregation. I disclosed to my congregation in 1991 that I'm HIV positive. That was very early. At that stage, I was in a congregation in Namibia, and coming from a white Afrikaans background it was extremely rare that anyone from a religious background and from the Afrikaans Dutch Reformed community would come out and say, "I'm HIV positive."

What gave you the courage to do that?

I just knew, from the first days that I heard I was HIV positive, that I believe nothing happened by chance in my life, and that God is in control. It's not his will that anyone suffers. But if something happens, then I know that God is with me in my suffering.

I always knew that somehow there must be a reason God can use this negative thing in a positive way. It took five years before I built up the courage to come out, and I did that because when I've seen how people reacted to HIV, it was always in a judgmental way. People immediately associated HIV in the religious circles with promiscuity, which equals sin; therefore, the people have brought it on themselves. I wanted to break that and say, "But that's rubbish. You cannot make a direct association that everyone who contracted HIV has necessarily done something wrong." That's not important, anyway. We're all broken people, and then we need God's forgiveness, if you come from a faith background.

So I wanted to give information from firsthand experience. I wanted to show that the person who is living with HIV is not somebody who's strange or, in the South African context, only from the colored community -- that it could be anyone. And I wanted to bring a message of hope and say, "We can live with HIV."

Did you do newspaper or TV interviews?

I didn't have a choice. When I disclosed to the congregation, we knew this was going to turn into a media story, because at that stage there was nobody that was open with HIV. In fact, we prepared a few of the media people beforehand so that they would know why I'm doing this, so that they could be there [when I disclosed to my congregation]. We had a press conference afterwards.

It did turn into a media situation, and I'm extremely thankful that it turned into an opportunity to help people to really understand that HIV is a disease that can affect anyone. It became an opportunity to break the stigma and to break the silence about HIV. I had a lot of opportunity to break that kind of stereotyping situation in South Africa.

Did anything bad happen with the publicity?

No. I had my sets of bad experiences. The media itself, we could always help them to get a positive message across. But as a result of that, you had situations where -- my wife and I started with a campaign; working in schools and doing peer education work with young people. And you had situations where the headmaster, after we spoke at the school, would come and say he must confess that he told the head girl of the school not to kiss us, because he was afraid that she might contract it. But after hearing us speak he now realized that he was wrong. So you had that kind of situation.

I was branded as the "AIDS Reverend," and the media would always write it in that way. So we had a task to help people also understand that there's a difference between HIV and AIDS, and being HIV positive doesn't mean you are in the final stage of AIDS. But still, I was labeled as "the Reverend with AIDS."

You had a congregation at that point?

Yeah, up to the point where I made it public that I'm leaving and that I'm HIV positive. The reason why I made it public and said, "I'm going to leave the congregation," was not that they asked me to leave or anything; it was more a situation of, I wanted to do what I said earlier, those three things of living it up positively. But the Church didn't have any vision for a mission, for working on HIV and AIDS.

Before I disclosed my status, I went to speak to the leaders of the Dutch Reformed Church in South Africa to say, "Can we start with an AIDS ministry in the Church?" And they said, "Why? We don't have anyone with AIDS in the Church." And there I was, sitting, and I was still considering: Should I tell them, or shouldn't I?

I think I was somehow lucky, because people knew how I contracted HIV. I didn't say that earlier, but let me bring it up now because it does help to explain some things. I'm a hemophiliac living with HIV, so I contracted it through blood products. At that stage, before I disclosed to the congregation, I shared that. My colleague knew that I'm a hemophiliac, and he also knew that I was positive. But he demanded that I get a letter -- he and the moderator of the Church -- that I get a letter from the hospital that would confirm that I was infected by blood products, and not by sexual involvement.

That was such a hurtful and painful experience, but also an experience of learning how faith communities can be judgmental and very stigmatizing and blaming in the way that they act. Therefore, also, in terms of the congregational response, I was extremely supported. I had a lot of support because people knew how I contracted HIV. People would come to me and say, "We've got sympathy with you, but those people -- they brought it on themselves."

So from that point on, I decided I'm not saying how I contracted HIV. I told you now, but in most cases I just don't tell people that at all, because it's not important.

Do you think that attitude is still prevalent -- that there are the good infectees, and there are the bad infectees? The innocent ones and the guilty ones?

Unfortunately, yes. It's still there. It starts to change, as more HIV-positive church leaders and faith leaders come forward and speak out, to help them to realize you can't make the assumption that everybody who contracted HIV has necessarily done something wrong or sinful. And also to help them understand that, in terms of how I understand it, coming from a Christian background: That's why Jesus came to die. He died for people who are broken. I think things change, but the automatic assumption in people's minds is still sorting people into these groups of innocent and guilty.

What do you say to people who come to you and say that HIV is a punishment from God for sinning? What's the answer?

The answer is no. Christ came once and all to die for every one of us who needed to be punished, but he stood in our place and got the punishment instead of us. It's about how we view God. If you view God as the old man, sitting somewhere up there, only waiting to punish people, then that might be a perception you work with. But then you're living a life that's not really a life of abundance and joy.

I believe that there are certain things that are a consequence. Things happen. You drink and drive and you are in an accident. Your accident is a consequence of your drinking. It's not a punishment from God. And the same thing in terms of HIV. A wife getting infected from a husband who was not faithful to her: It's a consequence. A person who could get infected from using drugs: It's a consequence. It's not a punishment from God. The God I know is a God of compassion and love, and the one who reaches out with grace to us. He is not the one who wants to get ready and punish people.

I guess related to that is this idea of judgment. A lot of people of faith feel that they can judge. What do you say to people who make those kinds of judgments? Is that a religious act, to judge?

Well, it's absolutely the reverse of that. If I speak as a Christian, from a biblical perspective, then God says, "If you do away with the pointing finger and, rather, reach out on behalf of the hungry and the oppressed, then you will become like a well-watered garden." In fact, to judge people is constantly -- I think that Jesus, and God through his prophets, were saying, "Don't do that. You're not the one to judge. I am." And God's judgment is so much different than ours. You do that with grace and compassion, and not with blame.

So, no. We're not the ones to judge at all. I think that's the good thing about HIV-positive people who are coming from a faith tradition, that they can say, "We are living with faith and we are living with HIV, and we know that we experience God's grace." And each one of us, as Christians, say that we are saved by grace. Then we must look at where we came from ourselves, and celebrate that, and realize that we also need God's forgiveness in our lives. We're no different from anyone else. We're not the ones to judge.

You're a founder of an organization, right? A new organization comprised of HIV-positive people who are of faith, and faith leaders who hope to change the world and make it more friendly for people living with HIV. It's more than 25 years into the pandemic. How come it's taken so long?

Yeah. The Church is not known for always [being] on time on things. Sometimes we must confess that we are a bit slow in reacting, especially on issues which link to human sexuality in general. We are perhaps a bit slow to catch up on things. But I can see that when the Churches do get involved that they are the ones that can do amazing stuff, and that can really, if their hearts change, reach out with compassion. I've seen that across the world.

I work professionally for World Vision in building, helping the Church to respond to HIV and AIDS. And I've seen across the world that, yeah, the Church might have been slow. They might have been very damaging and hurting. I'm the first person to confess on behalf of the Church that they've hurt people with HIV. But I've also seen, if they change, they can be the ones who embrace, who can ask for forgiveness, and who can really create an area where people living with HIV can experience acceptance and love and support without judgment. And what we want to do with INERELA+ [an international network of HIV-positive and HIV-affected religious leaders], as we've seen it happen in INERELA+, is that the Church can provide that. We've seen in Africa and a number of countries, with the same places where 65 to 85 percent of church leaders said that AIDS is a punishment from God; that was the same group that, a year later, has started to reach out in care programs for orphans and vulnerable children, support groups for HIV-positive people. So I've seen that the Church can do the opposite of the painful, hurtful things. They can be agents of change.

I guess you're still hopeful after all these years.

I am. I am, because I can see that people can change. People are not necessarily stuck in their ways. If they learn to change, and change their language and move away from stigma and judgment, then they can become a haven for people living with HIV.

How do you keep this sort of optimistic spirit after all of what you have gone through? It's many years you've been positive, and many years you've probably suffered stigma and discrimination. How do you, right now, say, "Well, we're going to change it now," after all these years? How do you keep the courage and the optimism going?

It starts with the support that I had. The first day I heard I was positive, I shared that with my friends and with my girlfriend at the time, who is now my wife after 20 years; and I've experienced amazing support from them. They were my close network of people who embraced me and gave me the courage to continue. But today, even though you get still disappointed very often [when looking at] the bigger picture, it is the small things -- the small step by step, the change that you see in one person's heart and the way he reacts and changes from a judgmental attitude into a supportive person -- those small victories are the things that keep you alive.

It is also the change that you see in people living with HIV -- from people who were self-stigmatizing, blaming themselves, closed, living a life where they didn't allow themselves to grow -- to a point where they start dreaming again and start to live life to the full. And it's in those small victories that you start to say this is worth it. It's gone.

What a great story. I wish you the best of luck.

Thank you.

An HIV-Positive Pastor Tells His Story

Reverend Christo Greyling is one of the founding members of an international network of positive people of faith called INERELA+ and off course, also of CABSA. In this inspiring video from the 2008 International AIDS Conference in Mexico, Christo discusses his life and his take on AIDS 2008.

Grateful for all the Blessings

By Thuli Hlatshwayo

(This article first appeared in the PACSA Newsletter and is used with gratitude)

Sometimes I have felt so blessed to have this HI Virus in my body that has managed to kill so many people and I have survived so far. Sometimes it’s so easy to talk about the success stories of HIV/AIDS and to see so many people getting onto the Government ARV programme. The first thing we are grateful for is a second chance in life. It will always be easy to talk about what has been good in our journeys with HIV. Do we ever talk about the pain involved? I will tell you why we do not talk about the pain that we experience. It is because if my body has not gone thinner and I don’t experience any sores there cannot be another type of pain that I feel.

In all its forms we expect pain to be physical. What about emotional or psychological pain? Even spiritual pain is underrated. I have been struggling for some time now with emotional pain, and with my limited resources how do I deal with it? My dilemma came with me being positive and understanding that God has called me to a different kind of ministry. That because of my strength and my ability to cope with my HIV status, it meant I would be able to help others with similar problems. So as you can see my calling was cut and dried as much as I wanted to run away from it. I couldn’t because I kept reaching the same conclusion; I have to do something about this.

So I went on my way revealed my status and people came to me and revealed their status as well. We were now forming a community of our own. A community that would be able to deal with the struggles of HIV. We had learned how to cope and that was the best. I thought we were untouchable. This was the highest point of my life. If God had decided to take me then I would have gone straight to heaven. My work was done. I was able to pull people up from their deathbeds and they realized that there was life after HIV diagnosis. Then if all this was as good as I say it was, why was I feeling so much pain? I have so much pain that I cannot explain.

It is only a few weeks ago that I realized that I was not honest with myself. I was showing the world what they wanted to see. A beautiful shining face that knows no pain. Yet inside me I was torn apart with pain, and the tears that I cry at night are countless. I would hide my pain so perfectly until it manifested itself in some form of sickness within my body, and then I would understand. Still I wouldn’t allow myself to deal with the pain, as I did not want to show any signs of weakness. I am strong and people depend on me. They look up to me. There was no way I could say I didn’t know how to help. It was expected of me to offer support.

Maybe its time I deal with the pain. The pain that I have been struggling with is the loss of the small community that we had built for ourselves. The community that was coping with HIV is dying slowly one by one. I want to know where I have gone wrong. I want an answer to what it was that I was supposed to do that I have failed to do. Why suddenly the people I have been accompanying for so long have started dying one by one.

All along I had been bringing “false” hope to people telling them that God is there for them. Was I building false hopes? Could people trust me again when I say things will be okay? I have not given myself time to grieve for the lost souls. I always feel that I need to be strong for those who are still alive. I always feel that if I show my weaknesses and I fall into pieces no one will be there to hold me. Does it mean I had betrayed God by letting His people succumb to AIDS? Would I in any way have been able to stop the processes of life? What did God actually want from me? I do not understand. Why me, why was I given such a calling if I was meant to fail anyway? Why me?

As much as I am struggling with the number of dying friends and relatives, as well as questions that I cannot answer, I am also struggling with personal problems. My desires for intimacy have just sky rocketed and I don’t know what I should do. I made a vow with myself that whoever wanted a relationship with me had to know first what they were getting themselves into. So disclosing my status was my priority. Ever since I started this I have seen men going in and out of my life as if I was watching a movie. None of them wanted to stay after I told them I was HIV positive. Why was that? Others would stick around until they had tasted the forbidden fruit (in a protected manner of course) then disappear. Does my honesty about my status mean that I am ‘ungodly’ and ‘dirty’ to have a normal relationship? I truly do not understand. It is time that I can happily say you know I do not have a clue how this works. There is just limited intimacy that parents and family can offer. There is also another level of intimacy that one needs that is no longer available any more.

This has been the toughest journey that I ever embarked on. Instead of getting easier and getting some clarity about such issues I just sink deeper and deeper into depression. Then I resort to dreaming about a knight in shining amour that will come and accept me as I am and take me away. Maybe I haven’t been listening to what God is saying to me. Maybe I am not ready for celibacy right now because my body keeps screaming for attention. Maybe I have lost it, I was supposed to stop being a sexual being as soon as I found out I was positive. How does one silence the bodies’ desire? If your body is screaming to you how do you scream back and say sorry I just cannot have what you are asking for.

Since I have been writing this piece I have been reflecting on my journey with the virus for the past 8 years. The only thing I have found is that I have not changed. I am still the same person I was before.

My guilt trip about HIV positive people dying has to come to an end. One of my colleagues told me that as long as I was there for the person up until they died then I have fulfilled my calling. God did not say to me, you will be an exception and no one who comes through your hands will be spared. But what God is saying is that I have given you time to journey with this person so that you may be reminded of the many blessings I have given you and be grateful. God alone understands when people have suffered enough and he calls them to rest. We can never stop that process. All we can do is delay it for some time.

Although my guilt is subsiding I still feel that I could have done more. I feel as though I have failed my calling. How does one begin to bring healing to people? I am talking about spiritual healing. We need to know that we are alive and that God still loves us as we are. We still believe that we are the salt and light of the world. Perhaps if people can let us be, maybe we can forget that we are positive and carry on living. I have a beautiful reminder every time I take my ARV’s that I am living positively with this virus. So please do not remind me, for I already know. Just let me be a servant to you.

Medicine: Trial and Error

By Thuli Hlatshwayo  (This article first appeared in the PACSA Newsletter and is used with gratitude)

This Is Me and This Is My Challenge To The Church.

(Patty Thomas, living with HIV and AIDS, challenges the church in her own words)

I believe that my past is not my future. Both my child and me had been tested HIV positive seven years ago. HIV was taking full control of my life. My biggest enemy was fear of rejection. What will people say? What will the church, my friends, my family and

society say?

I was victimized by this virus, and I was convinced that if I walk down the street that everybody will be able to see my status as a sufferer from the virus and that they will mark me as monstrous and disastrous. I became very self destructive towards my body

and myself. I had a false belief that that I’m unhealthy, and not a very welcome person to be around with.

Today I realize that most of my fears, doubts, uncertainties and also my ignorance were because of my own internal fears, and these fears were supported by the stigma towards this virus. I also realized that the only way to heal myself from all my anger, bitterness

and false guilt was to toss away with all my panicking thoughts. It was to accept this virus and acknowledge my wrong doings and mistakes. I needed to look deep inside myself,

my heart, and make peace with this virus. I have come to one realization that no one can challenge your fears for you – only you can do it… that no one can make me feel inferior, ashamed or rejected, unless I allow them to. Despite the fact that I’m HIV positive, that I do have the right to live a life of peace. That I do have the ability to transforms my ways of thinking and being, to become a productive member of humanity… that I do have the power to change! And for me, the bravest thing that I could do, when I wasn’t brave, was to be brave, and act accordingly.

Living with HIV can cause you sometimes to become a very demanding person. You desire more of people and friendship, which is sometimes humanly possible. No matter how many friends I have, nobody could do for me what I must have done for myself.

I also feel that the church must stop and think, before it can implement workable programmes. It first needs to define its belief systems built on the acceptance and forgiveness of God. For the church to understand the roll she needs to play, she must

stop asking “How did you get it?”, and start asking “How can we help? What can we do?”

History is full of examples of church programmes that became great institutions built on the Judeo-Christian principle of charity. In recent times the church has forsaken this calling and engaged itself in theological debates. There needs to be a revival of a

practical church with practical solutions. The same Jesus that opened the blinded eyes also fed the hungry. There needs to be a balance in our world view. IT is also okay to have theological debates, but then we need to apply it practically.

Practical steps:

1 Start to train and educate people about HIV and AIDS

2 Consciously treat people living with HIV and AIDS as part of the church, and not as victims, by trusting them with responsibilities.

3 People living with HIV and AIDS need a support structure to help us deal with the emotional challenges we face.

Regards,

Patty Thomas.

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