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Mara Rio de JaneiroMara

What I would like to tell people is that life is worth living, it’s worth waiting, and it’s worth fighting for.

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My name is Mara Moreira, I am 35 years old. I live in Itaguai, Rio de Janeiro.

I was infected with HIV in 1994, during my first relationship at the age of 18. I thought that I was outside the risk group, that AIDS was only among homosexuals, drug users and gays. I thought that I, married as a virgin and an evangelical Christian, was outside of this epidemic.

I found out I was HIV-positive about fifteen years ago, when my husband fell ill. Three months after my wedding he got very sick with pneumonia and discovered that he was HIV-positive. He died a year and four months after, and there I was, 19, a widow, without much information of what AIDS was. I looked for information through the group Pela Vida, where I was able to meet other people who also lived with AIDS and I was able to understand that life continues after HIV.

It’s not easy really to live with AIDS, so I hope people become aware of the importance of condom use. It is only by using a condom will we be able to control this epidemic, which doesn’t have a face anymore. Those who see a face can’t see AIDS.

I think each person has to continue living, to make an effort to live with this reality, even with so many difficulties, so many side effects from the medication. Three years ago I got married. I’m married now, and my husband is negative. What I would like to tell people is that life is worth living, it’s worth waiting, and it’s worth fighting for.

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My first husband suspected that he might be HIV-positive. He had already had relations with other people before me. I was 18, and he was 21 and sexually active. We had other STD tests done before our wedding, but we were not asked to have an HIV test. I never for a split second thought my husband could be HIV-positive. As contraceptive, I used only the pill, not condoms—it should have been both.

He fell ill and when he was tested for HIV, it was positive. When I found out about my husband’s status I started to think what my life would be like from then on, what it would be like to introduce condoms into our relationship. That would be our reality from then on. He was very ill and frail, but still, we had relations with condoms.

It took three months for me to receive the test results, and mine was also positive. I wasn’t afraid, because I have no fear of dying—I am an evangelic. My reaction wasn’t the usual one. I understood that because I did not protect myself, that would be my reality from then on: I had AIDS.

My husband’s condition got worse. He started taking AZT, but his body was too weak and did not react to the medication. He developed neurotoxoplasmosis and died a year and four moths after he found out about his HIV status.

I was widowed at nineteen, and moved back to my parents’ house. I did not know whether I could use the same plates or glasses as my younger brothers, or if it was okay to wash all our clothes together in the washing machine. That was when I looked for Pela Vida, where I have worked as a volunteer for nine years now. That was where I learned how to look after the people I live with, so that they don’t get infected with HIV.

I met someone three years ago over the phone. He is not HIV-positive and after five dates I gathered enough courage to tell him I am HIV-positive, widowed, and that my husband died because of HIV. He understood, and said that he would help me pull through this. We have been married for three years. He already had a daughter. We don’t want to have kids because my viral load is too high. I am trying out a new drug at the moment.

I have taken anti-retroviral medication for the past 14 years. Some have horrible side-effects, which I have experienced, like diarrhoea, nausea, and increasing triglycerides. Not to mention the lipodystrophy, which inhibits the distribution of fat on the body, on the arms and legs, and causes you to lose the fat on your face. In Brazil one can also have a methacrylate filling in the face—I have that—so the HIV does not show, at least not in the face. You can’t tell by looking at someone’s face if they’re positive.

We know that AIDS has no face, but there is the stigma still. Before, our friends died three months, six months after the diagnosis. Nowadays people go on living for twenty years, even with the side effects. There are pros and cons to the medication, but it’s all worth it.

My husband understands it all; he had no prejudice and volunteers at Pela Vida also. He is straight and has no problem working with transvestites or homosexuals, thank God for that. My parents also give me full support, everyone in my city and at the church knows about it.

In Brazil there are many churches that offer no support to people with HIV. Some preachers demand that their followers stop taking the medication, tell them that God alone will heal them. These people then stop taking the medication and die, because of the ignorance of these preachers.

I believe that yes, God can heal us, but through medicine. If He has given this wisdom to doctors, these doctors will assist others to heal. It is not only about taking the medication if you do not believe they will heal you, if you don’t have the will to live. It’s been proven that body and soul work together. If I believe, and if I take the medication at the right time and do my bit, God will do His bit through the medication. That was the kind of psychological and emotional support I received from my church. Their unconditional support over the last 15 years has been extremely important to me.

Through this project I focused on cherishing everything: the view from where I live, the sunset, our pets, the people around us. I have documented many happy moments—especially between me and my little sister, Mayara. I am the eldest and Mayara is the youngest. She lives next door with my parents. She considers me her second mother; our bond is very strong. She knows all about the HIV. She understands, and helps me to take my medication. I am 32 and she is 7.

People with HIV cherish every minute, and they see life in a different, precious way. If I were not HIV-positive, my life would be different. I would not cherish it as much as I do today.

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