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Jorge Rio de JaneiroJorge

I used to think, like many people still think today, that HIV was on the other side of the road, walking by me. But that’s not the case. HIV was inside my house and I did not know it. It was inside of me and I didn’t know.

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My name is Jorge Fernando. I come from Sao Cristovao, in the North Side of Rio. I have been living with HIV for 14 years.

HIV changed the trajectory that I had traced for my life. My dream had been to build a life working, but I couldn’t fulfil that dream because of the many opportunistic diseases I had at the beginning of my infection. I had to stop working, and that’s something I miss to this day.

This changed my life a lot, but it had a good side, which is that I started doing prevention work, a kind of work that I might not have done. I work to raise awareness so that people don’t get infected with HIV.

In the beginning I thought I had an expiration date, that I was being told, “You’re going to die in so many years.” I thought like that. When I started going to self-help groups, people showed me that you can live a long time with HIV, many many years.

When I found out about my infection, my wife at the time was pregnant with my son. My greatest happiness was finding out that she wasn’t a carrier of the virus, and neither was my son. Today I don’t live with her, but we’re friends, and my son is always here with me. He is thirteen years old. He is a strong boy, and plays football in Cabo Frio. Who knows, he might be the next Caca.

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When I found out about my HIV status, I was working as an assistant manager in a company and the director’s brother needed a blood transfusion. We were asked if we would be interested in donating blood. I recruited nine people to go with me. I donated it at the Sao Lucas Hospital in Copacabana. A week later the hospital contacted me asking to collect my results. I was worried because I did not go there to do a blood test. I donated blood, so why were they calling me to collect a result?

I went to the hospital and there was a doctor and a psychologist waiting to see me. I thought, “Something’s wrong.” They asked me a few questions and I replied to them naturally. Then they told me that the results were “HIV-positive serology.”

I said, “This can’t be right. I would like a second test.” I did it and the confirmation came. I was shocked, and shaken, and still it felt like a dream. The very first person I contacted was my manager, and we talked. He was very supportive, he could see how shaken I was. He sent me home to calm down a bit.

When I got home, I explained what happened to my wife. She burst into tears. I felt more upset then because she was three months pregnant. I started to worry whether she was infected as well as the child, and I felt guilty for both. I took sick leave from work the day after and went to her obstetrician for an emergency appointment. When I saw him, he calmed me down by saying that he had previously requested a test during her prenatal exams, and it was all clear.

He said, “Look after yourself now, because there is treatment for it. It is not like it used to be.”

Before, one could physically recognise an HIV-positive person. Nowadays the government assists patients with adequate medication. The government is helping a lot by financing the treatment—this is between brackets though. It is a kind of a compromise on their part, for this is much easier for them than to allow hospitals to be packed with HIV patients, turning it into an epidemic. They would have to spend much more that way.

I do not know for sure how I got infected; I had many risky situations. I needed a blood transfusion for a surgery I had on my leg, and blood was not yet tested for HIV at the time. And I had extramarital sex without protection even though I was aware of the need for prevention at the time.

There is great affection in my family, so without any hesitation I gathered my whole family to tell them about it. When I told them, I asked them to not feel sorry for me. “I just need you to help me, and I don’t want to bear this burden on my own.” I needed their help with positive words because in the beginning I was sure I was stamped with an expiration date. They all supported me, saying, “You are family and we are sorry this happened to you, but it is not because of this that we are going to disrespect you.”

Once on my birthday, a friend said to me, “Jorge your family cares so much for you, it’s really moving.” The trust I placed in my family was the main factor in their trust in me. I wanted to take the risk, and not hide away from anyone. I don’t like when people lie to me or hide things from me either. This care, love and affection is what helps me live.

I am not working anymore. I stopped working in 1997 when I suffered neurotoxoplasmosis, pneumonia, and tuberculosis almost simultaneously. It was a hard time. I was in a coma for five days. The doctor who treated me then—and still treats me to this day, a great doctor—told my wife and my mother, “I will do the best I can. Let’s pray to God that tomorrow he will be right here and not down in the morgue. He is in a very critical situation and we don’t know what will happen in the next hour.”

They both went home and gathered all the family for a prayer. I practice both Catholicism and Umbanda.1 They prayed for me tirelessly and I got better. I thank all of those in my family who prayed for me. It is through my faith I am able to be here today, strong and well.

Due to the neurotoxoplasmosis my left side was paralysed, as if I’d had a stroke. I had physiotherapy and nowadays I walk normally, although you might be able to tell I limp a bit. But I overcame all this.

I’m still friends with my wife. We came to the conclusion that it would be better for both of us if she lived apart from me, but we are forever boyfriend and girlfriend. As the saying goes, God works in mysterious ways. We get together once in a while, we have our dates. She lives in Cabo Frio, an area surrounded by beaches around 200km from Rio. Once a month I visit them and my son also comes to visit and stays with me.

When I moved back to Sao Cristovao, I moved back with my parents. My mom had pulmonary emphysema at the time and needed my help. My father has Alzheimer’s. He is like a child now. I help him to do everything; he does not even let my mother help him. I am the one who bathes him, changes his clothes, puts him to sleep, and feeds him too. My mother is 76 years old. She does not have the patience anymore, whereas I do. The doctor told me, “You’ve got to have all the patience in the world.” And that’s my life.

My sister suggested that I look for local groups of people living with HIV. I thought it would be a lot of sad people, crying, and I did not want that. Then my friend’s mother, who was also HIV-positive, invited me for a meeting and assured me I would enjoy it. I went and I did enjoy it; it really changed my life, my self-esteem. I started to appreciate myself more and I haven’t been sick again, no problems at all—with the exception of a blood infection as a side effects from the medication.

I used to think, like many people still think today, that HIV was on the other side of the road, walking by me. But that’s not the case. HIV was inside my house and I did not know it. It was inside of me and I didn’t know.

That is why I work with prevention, so that people do not get infected, not only with HIV but any STD. I give talks in work places, schools. I work with a group called Viva Voz (Living Voice) where we give people information regarding STDs. My main point is always the same: You might think that AIDS happens to other people, but that is not true. It is happening here and now. So before doing anything, use your head, and live your life.

HIV has brought me good and bad times. The good is that through HIV I’ve met many people, made many friends. It changed the meaning of my life. I had a goal planned for my life, but since I was infected by the virus, my trajectory changed. I had to get rid of my life plans. The message I want to leave for people is live and don’t stop living. Life is beautiful only for those who cultivate life in the best sense, with happiness and good humor. When you love yourself, life is beautiful, life is grandiose, life is loving. So love and let yourself be loved.

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