My name is Ana, I live in Tijuca, Rio de Janeiro. I am 40 years old. I have lived with HIV for 20 years.
I am a happy person, but it hasn’t always been like this. I was rebellious. I didn’t want to take the medication. I was sick with AIDS, bedridden, in a wheelchair. I almost died but didn’t thanks to my will to live, the Brazilian Unified Health Care System, and to the medications. I have trouble with speech and memory loss. What bothers me the most is to have forgotten things from my past. It’s not easy to live like this.
The most difficult moment of my life was to discover that I was pregnant and I had HIV. I suffered for months. I even tried to have an abortion, but the doctor said there was no need, that I was very sick and the baby wouldn’t survive. To my surprise and the surprise of all, the baby was born. He was sick, but in time I found he was negative. My greatest joy was when I opened the result of my son’s exam and there it was, negative. I cried, I laughed. I ran and told my friends, and everyone cried, laughed. It was the greatest emotion I have felt in all my life.
I want to take this opportunity to pay homage to my friends who battled, who put up a fight and couldn’t get here. Many people I knew died, the majority before 1995. I remember their faces, their smiles, their struggle, and us lying together on Paulista Avenue, in the sun, in the street campaigns. I would like to leave a message to these warrior friends: I love you, thank you for helping me get here today.
I got HIV from a person very close to me, a family member, my father’s only brother—my uncle. My father was crazy about him. He was in the circus, and the family would go along with him. Everything I’ve learned, I have learned from him. I was a big admirer of his.
He used to travel a lot, and once in 1984 he came back earlier than expected and caught his wife in bed with another man. That was too much for him. He shot himself in the head. He had a lot of blood transfusions in the hospital. He nearly died.
After a few months in the hospital, he came to live with us. He was deformed, my brothers were scared of him, but I had promised I would look after him and that I would never let any other woman go near him. As soon as he was fully recovered, he rented a house, and I was always with him. My family thought it was natural.
We ended up sexually involved.
In the beginning it was a secret, but my father eventually found out. He was desperate. He loved his brother, and loved me also. He looked at us and said, “I can’t be mad at my brother, at my daughter. I love you both. But I cannot accept this relationship. So you can go on with your lives and leave me alone with my sorrows and my memories.” Many years went by without me talking to my dad.
My uncle never recovered fully, and had constant health problems, and so did I. But I never thought about HIV. We treated our ailments and got on with our lives.
At one point in 1992, I had decided to get away from my uncle. I wasn’t a teenager anymore; I was a grown woman. That situation was not right. Society did not accept it. So I left and went travelling around the Northeast of the country. While there I met a young guy, and we had a love affair. I was not aware I was HIV-positive. I had sex without a condom and got pregnant. I didn’t know about the pregnancy or the HIV.
I would call my mother once in a while, since my father did not talk to me anymore. I phoned her and she told me my uncle was very ill, and that perhaps he was missing me terribly, since we had never been apart before. I was still in love with my uncle. I was worried and went back to see him. He had a high temperature, the bed sheets were soaking wet. He had lost a lot of weight, and he was visibly showing the symptoms of AIDS.
I looked at him and said, “Do you have AIDS? If you do, so do I.”
He asked me, “Have you met anyone on this trip of yours?”
“Yes, I have.”
“Did you use condoms?”
“No, I didn’t.”
“Then you might be pregnant.”
I went to a clinic and asked for a pregnancy test and an HIV test. The doctor looked at me and said, “Such a young lady, and married. Why the test?” I said I needed it. I got the results and the doctor broke the news to me, “Double positive. Positive for HIV and for the pregnancy.”
That was the saddest moment in my whole life.
I was prescribed a lot of AZT, also Bactrim. Since I was feeling okay, I gave the medication to my uncle, who was ill but did not want to have any tests done. He recovered a bit, and because he was happy to have me back, he got better. We got on with our lives, with our work. Our work was fun and we travelled a lot to all sorts of events—parties, rodeos. We made a lot of money, had a comfortable life.
Then we were robbed, one of many, in Sao Paulo at a traffic light. It was a young boy, fourteen, fifteen years old, armed with a gun. I thought it was a toy. I gave my uncle a sign to step on the accelerator, and the boy shot at us. One of the bullets hit my uncle. He stayed ten days in hospital, and then he died. He told me before he died that when he wanted to die he couldn’t, and when he was happy, he was dying.
During my pregnancy I did not have prenatal accompaniment, and had many difficulties. I went to a few clinics, and when I said I was HIV-positive the doctors would say, “It’s not the right time yet.” But it was, so I decided I would not tell them I was HIV-positive. My son was born, a natural birth. I was aware that the birth could get him infected, but there was nothing I could do.
The nurse brought him over to be breast-fed. Now that he was born, I could finally tell them. I told her I could not breast-feed him, and she asked me why. I said I was HIV-positive. And she said, “Yeah? Would you rather your son die of hunger or AIDS?”
I said, “Of hunger.”
The other mothers who were near me were so moved by this, and asked if they could feed my son. But I was shocked and asked them, “Has anyone here used condoms?” Of course not, they were all mothers.
“Has any of you done an HIV test?” No. It was 1993. “How can I give you my child when you have not been tested yourselves?” I knew I would not be able to breast-feed him.
In his bag, I had brought a milk bottle, and at lunch they brought me a cup of tea. I poured the tea into the milk bottle and gave it to him to drink. He fell asleep. Then the night nurse, a different one, very sweet, took him and gave him milk. She calmed me down, and looked after my son and me.
I thought my son was positive because he was born very weak. He had to stay in the hospital until they found out he was allergic to milk. He had to drink soymilk, but since they found out about that, he has never been sick again.
When I opened my son’s test, it was negative. It was the greatest joy I have ever had in my whole life. I would not be able to stand the burden of having contaminated an innocent boy. It was a gift from heaven. He’s been very lucky.
In 1995, they often showed images of people dying of AIDS. The organization of which I was part decided to start a campaign to fight the prejudice. I was one of the protagonists of a very powerful campaign: Quem ve cara, nao ve AIDS (Those who see a face, don’t see AIDS). I put my face in the media. At the time, my family was proud to see me, but some neighbours had sprayed graffiti on my family’s wall, “House of AIDS.” The wall was painted again, and I went on to take part in other campaigns against prejudice.
My son was then a baby, but now he is a teenager and recently has suffered prejudice at school. In recent years I have suffered some serious prejudice. Since 1998 I have been hiding myself. I could not protest without showing my face, so I went quiet. It is so annoying to have to hide.
My message to my son, as I take part in this project, is that I don’t want AIDS to cause such discomfort in people. I want my son to live in a better world. The people I know did not look for AIDS; AIDS showed up in their lives. I have heard of people who were killed for having AIDS, for being gay. We cannot go on in a world like this.
My uncle was an atheist, and he taught me a lot about philosophy. For me it was hard to believe in the existence of God. One of the things that marked me the most during those last minutes of his life, was that he said to me, “My darling, forget everything I have taught you. I haven’t got much longer, but you do. Seek. Seek for something, because there is.”
Those were his last words. I am still searching.
In 1998, when I was ill, a retired nurse introduced me to Saint Expeditus, and she told me I could ask him anything. I was bedridden in a hospital; I had nothing to lose. I prayed for health, and the amazing thing is that I was granted health. I became devoted to this saint, and pray all the time.
During this time when I was ill, my dad started to look after me again, to love me again, carry me in his arms, feed me. That was a very important moment in my life. I do not know if I can heal the pain I caused him, but I know that he still loves me. He tells me wonderful stories, and he is so like my uncle—I had never noticed how much. I love my father, in a very special way, and I wish I had noticed that sooner.
I am very happy. I have managed to live to mend a few mistakes. I do not regret anything I have done. My uncle is my idol, and he changed my life. I do not blame him for getting HIV from him and I am very grateful for the very rich life that I have. HIV demands that you live intensely. It leaves us so sensitive. You start to see life in a special way. I love my life, and
I can honestly tell you that I am a person transformed by HIV—I am a better person now.