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Text: Guillermo Errea
Jesus is not very short when it comes to speaking. And he does it with a natural grace that on numerous occasions makes me laugh out loud. He has short, gray hair, wears beige pants and a white shirt with a Mao collar. Next to him is always Ramón, his dog, whom he adores and considers part of the family.
Although he is very active, he transmits peace. He approaches everything from his work as a peer. He immediately takes the conversation to his own territory: “When a doctor tells a newly infected person that they will be able to lead a normal life, they don’t usually believe it. That’s why it’s very good for him to see a person with HIV and for him to tell him: ‘Look, son, I have sex with my sexual partners and I can do it with peace of mind, without fear of infecting them. If you take the medication properly, the virus becomes undetectable and, therefore, untransmissible. From there, they start to internalize it a little bit. They need practical examples. The doctor is still a doctor, they see him as a doctor, of course”.
The State AIDS Coordinating Committee (Cesida) has launched the Pares Program in 2006 and opened with it a new path in the care of people newly diagnosed with HIV. Under the program, more than 3,000 actions are carried out annually in 20 hospitals and more than 1,500 people are counseled. When Jesús learned that he was HIV-positive, the program had already been in operation for two years.
Video: Julio León.
Jesus’ table of salvation was named Reyes Palacios. “She was wonderful. When he appeared, the first thing he did was to give me some condoms. I burst into tears and told him: ‘But I’m not going to use them anymore in my whole life, no one will want them! Then he looked at me and said with affection: “Look, faggot, in three weeks you’ll be like you were before. I thought, who is this donkey? But she continued: I have HIV and, in all this time, I have been a mother, I have been a grandmother… She told me her personal story and told me that HIV had turned her life upside down. Then, little by little, you start to see the light.”
Perhaps that is the moment that changed Jesús’ life: “Right then and there it was clear to me that, if I could someday, I wanted to dedicate myself to doing the same thing as Reyes,” he recalls. He has been a PAR educator for ten years.
“When Reyes showed up, the first thing he did was to give me some condoms. I burst into tears and told him: ‘But I’m not going to use them anymore in my whole life, nobody will want them! Then he looked at me and said with affection: “Look, faggot, in three weeks you’ll be like you were before. I thought, who is this donkey? But she continued: I have HIV and, in all this time, I’ve been a mother, I’ve been a grandmother…”
Jesús García Carrillo.
Reyes Palacios is an institution in Adhara Sevilla. A woman, HIV positive and mother, she died of cancer a few years ago. She was one of the founders of the NGO along with Yolanda, María and Mili, at the urging of Africa, a psychologist who chaired the Seville Citizens’ Anti-AIDS Committee, and Dr. Pompeyo Viciana, who was the head of infectious diseases at the Virgen del Rocío Hospital. Jesús speaks of them with devotion: “They went there with their car, stood at the door of the hospital and attended to people in a somewhat informal way. The woman, because she is a mother, to protect her children, does not tell her HIV status and suffers in silence. When people talk about HIV, they think of men who have sex with men, not mothers. Many of the women I see say they have never had sex again and they are people who were diagnosed twenty-something years ago. So the fact that I was welcomed by Reyes was doubly important to me.”
Son of Antonio (died in 2007) and Carmina (who is 86 years old), Jesús has four siblings, three girls and one boy. He is the fourth: Antonio, María del Carmen, Salud, Jesús and Inmaculada. Between the oldest and the youngest there is a gap of fourteen years.
The road to today has been long and complex, and that difficulty has been caused mainly by himself. Jesus admits it openly. He knew from a young age that he was homosexual. “I used to ask the Three Wise Men for a bucket with a mop, and they brought it to me. Another year I asked them for a kitchenette, and they brought that too.” So when he said at home, at the age of 17, that he was gay, it was no surprise. He has always had the support of his family. “It was, curiously, before I had my first sexual relationship, when I was 19. My mother’s response was: whoever you get into bed with is of no interest to anyone but you and that person. All I want is for you to be happy”. We are talking about the end of the 80’s?
“Who you get into bed with is of no interest to anyone but you and that person. All I want is for you to be happy.”
Carmina Carrillo, mother of Jesus.
With her father it was a little different, but she also speaks of him with respect and admiration. He died just before Jesus contracted HIV. “It is also very important to educate children towards their parents; in other words, I educated my father on the subject of gay visibility. There came a time when, for example, at the wedding of one of my sisters, I went with a couple and my father was presenting them to the people of the town with pride, without complexes”. And with his siblings, the same. His sister Mari Carmen corroborates this: “When he told us that he was homosexual, the truth is that there was no problem. Affection and respect for my brother always took precedence over anything else. Even my father, who was born in 1924 and was an old-fashioned man. My mother made him see that he was still her son”.
Mari Carmen drops her brother out of her mouth: “My relationship with him is fantastic. Already when we were children (he is seven years older) I became responsible for him, I took him and another neighbor boy by the hand to the San Joaquin day care center. He was always my protégé, I loved him very much, really, very much. Besides, he is such a good person, so empathetic…”. This relationship is not exclusive between the two. All the siblings have a special chemistry between them, to which they have been joined by brothers-in-law and nephews and nieces, who meet -as many as possible- once a week with their mother, Carmina.
AN OBSESSIVE DISORDER
Despite all his surroundings, Jesus could not avoid falling into a very dark pit. “I had a sexual relationship in which I did not use a condom, I was the insertive subject. And, from there, an obsession arose in my head.” He was 19 years old and an obsessive-compulsive disorder ensued. “I took the HIV test running. It was tremendous. It was influenced by the fact that the testing protocol was very different. The tests were not safe at all. In fact, the test I took was called ‘simple net’, like the music group, with very low reliability. It had to be repeated at three and twelve months to confirm results.” During that time, he developed a permanent feeling of hypochondria. At all times he thought he had acquired the virus. “My glands were swollen, I had a fever. I am a person capable of somatizing fever. Psychologists say it is very rare, but I did it. I started to develop symptoms that did not correspond to anything. And I would do the tests again, and so on permanently”.
Jesús continues his story: “My brothers did not know how to help me. Apart from putting me with a psychologist, the same one who is still treating me today”. Mari Carmen remembers it the same way. “I suppose that when he started having sex, the fear of contracting HIV also arose. At that time, there were sad days. There were days when Jesus would go into the house and start crying. It was hard. We watched him suffer, we didn’t know what to do because, what do you say to him?” They did what they did best: “We continued to give him all our love.”
“I guess when he started having relationships the fear of getting HIV would also come up. At that time, there were sad days. There were days when Jesus would go in the house and start crying. It was hard. We would watch him suffer, we didn’t know what to do because, what do you say to him?”
Mari Carmen, sister of Jesús.
The whole family unit had to be involved so that they would not favor obsessive behaviors such as refusing to check if he had swollen glands. “All the medical books in the house had to be thrown out. If I did the test, I would go to the medical school to find out about it and, of course, I would make a mess of things: I would look at the degree of reliability of the test, its sensitivity, its specificity, and I would come to the conclusion that it was a piece of shit. And then I would do another test, and another, and another…”, explains Jesús. He came to take a test every month or every two months, even without having sex. His obsession with contracting the virus prevented him from enjoying them. With his characteristic sarcasm, he says today: “My psychologist used to tell me: what you have to do is have good sex (…) and you will see how the obsession will go away”.
As time went by, he got a little better: “I had sporadic relations, but I was still very afraid of the subject”. To get out of the hole, and by medical prescription, Jesús stopped having tests. The situation was reversed almost immediately. “The doctors’ ban was good for me, it was the perfect excuse not to take tests because, if not, I would fall back into the loop and the anxiety would return. I don’t know, you have to lose the fear of tests. Everything happens by accepting that sexual health has a component of care and responsibility, but without fear, because the important thing is to diagnose early, not to diagnose late and wrongly”.
CONTRACTING HIV AND COPING WITH IT
In her case, this was not the case. After a short time, she noticed stains all over her body. “It looked like a flamenco dress from the spots I had. I went to the primary care doctor, who had been my doctor since I was 14 years old, and he told me: ‘But how can you have that? I went more than five times to the doctor, who prescribed me corticoids, which lower my defenses, which was terrible because HIV eliminates your defenses, so the problem was getting worse. The spots would go away and four days later they would come back. Until I went to the Virgen del Rocío Hospital and they told me: take the test and, if it is not, that’s it, don’t worry. With that test I found out”. But he clarifies: “Catching HIV forced me to face the situation. I rested. I said to myself: now it’s really true”. His sister thinks so too: “Well, yes, that’s how it was. My brother is a hypochondriac, you talk about something and he is already looking to see if he has it or has had it. So when he found out, it was a liberation for him. Not only that, he found meaning in his life.”
It can therefore be said that Jesus had a late diagnosis, with the infection already advanced. In Spain, there are 13% of patients who do not even know they are infected with HIV.. We are talking about 20,000 of the 146,000 people living with the virus. Moreover, in our country a late diagnosis is made in almost half (48%) of the new cases, according to available data.
“My brother is a hypochondriac, you talk about one thing and he is already looking to see if he has it or has had it. So when he found out, it was a liberation for him. Not only that, he found meaning in his life.”
Maricarmen, sister of Jesus.
Jesús was directly given definitive sick leave. “Eighteen months after the temporary leave, a court must decide whether or not to retire you. But at 18 months I was already in a very bad way. The treatments weren’t doing anything for me.” Then, when the medication started working, he recovered. “But what couldn’t be is that I was receiving a salary from the State just like that, I had to give that back somehow, I couldn’t receive it in exchange for nothing.”
The Jesus of today has nothing to do with the one he was, he says. “This apprenticeship has served me well for everything and for my whole life: to face family misfortunes or whatever, although hypochondria will always live with me.” Mari Carmen also observes this change. “I think she has matured a lot. In addition to his age, which gives you that aftereffect, HIV has made him mature. It’s not that he has changed as a person, he is still the same, but now he is more reflective, more settled in life. As I was saying, he found meaning in his life by helping others.
THE WORK AS A PEER
That ‘new’ attitude is what Jesus conveys as a peer, a work that he considers fundamental in the HIV process. “We have to look for excellence in care because care reduced to the medical part in HIV does not work. If a person locks himself in his house, with his stigma, with all his mental construction of what it is to have HIV, we don’t solve anything. The only way to put an end to that is through other support. In the ten minutes he has to see you, the doctor can’t get those ideas out of your head”.
Video: Julio León.
Jesús, who is a computer technician and studied teaching, explains his current work at the hospital, where he has an office next to that of the specialist doctor. “The doctor comes out, introduces me to the patient and says, ‘Look, this person is going to help you. The first thing I do is accompany him through the whole medical process: X-rays, blood tests… In the meantime, we talk to each other. Then, we sit in the office and continue. We use the counseling technique, asking questions so that the person can choose his or her own path. If a person tells me “I would commit suicide right now”, I answer: “Well, we already have an option, the option that now, when you get out of here, you commit suicide; but can we leave this option for next week and try to do something else this week?
“When I went to see Jesus, who was my PAR, for the first time I feel and live that I speak as an equal. And he puts the words, the situations, on the table with normality. He says to me, “Hey, look, I’ve been in that situation and in other circumstances, eh?”
Rafa, person with HIV who had Jesus as a PAR educator.
Rafa knows Jesus because he was his peer. However, Rafa does not respond to the most common user profile because he lived his diagnosis in a quiet way. He looked for and went to different associations in Spain, since he travels a lot for work reasons and his residence was not in Seville. As he was going to move to the Andalusian capital, he finally landed at Adhara, which assigned Jesús as a peer. “Contracting HIV has not meant any mortgage for me,” Rafa assures. “The only obsession I’ve had has been to protect the people around me, but above all my parents. They know perfectly well what my situation is, so I don’t care about the rest of the world as long as I protect them.
So he came to his encounter with Jesus without drama. However, he admits that he had some doubts. “I’m not a robot, of course. And I meet Jesus. Apart from personal management, what he conveys to me is absolute normality. He gives me a logical scenario of what is happening and organizes the situation, what I have to do. I am not referring so much to the medical-health level, which is also true, as to the emotional, psychic level. It gives me a series of guidelines of what I could do depending on the state I am in”.
Rafa continues, “For the first time, because I think it’s the first time, I feel and live that I’m talking as an equal. And he puts the words on the table, the situations, with normality. He says to me, “Hey, look, I’ve been in that situation and also in other circumstances, eh?” He emphasizes Jesus’ empathy, “that tact, that feeling that you have reached a place where you are comfortable, you can expose everything that worries you, without feeling judged at all. For me, that is Jesus. Maybe I’m a different kind of person and I don’t connect as much. In fact, the two maintain their relationship. “He stopped being my peer right away and became a person I hang out with from time to time. Because of his sense of humor, because of the way he is. We talk very little because I’m busy at work and I travel a lot, but we usually meet up”.
PAR’s work is a 24-hour service, 365 days a year, not only with users, but also with their families. But Jesús recognizes that it’s such a rewarding thing that it’s worth it. “I know that today we have it easier because all the messages are positive: undetectable equals untransmittable. Life expectancy is about the same as someone who doesn’t have HIV. It was not the same as when I was seen by Reyes. The first thing they said to Reyes was: you have to solve the problem that you have two children and make arrangements to leave them to your sister before you die. That is why I recognize so much the work of the old peers, because many of them accompanied the death and in solitude”.
“He has a vocation. I have known him for over thirteen years and he has always had time when someone needed him. His phone is at the service of users at any time.”
Victor Baceiredo, PAR educator.
Victor Beceiredo is also a peer and companion of Jesus at Adhara. For Victor, Jesus is a man committed to helping others, “dedicated and involved with people.” “He has a vocation. I have known him for more than thirteen years and he has always had time when someone needed him. His phone is at the service of users at any time, he helps by example,” he emphasizes. But she does not stop at defining him as a peer. “He is a magnificent partner, a friend and a very good president of Adhara. He is an activist and his life is a pure example of how to transform something that seems like an insurmountable obstacle into something with which you can grow and become greater as a person,” he concludes.
To be a peer educator (a peer), it takes more than just being an empathetic person. It is not just sitting and chatting with another person. It is essential to receive training. Jesus analyzes the current situation and discusses the new challenges ahead. He talks, for example, about aging. “It’s a reality that was unimaginable before. For them, the important thing is quality of life. Because HIV causes deterioration, cognitive and otherwise. Today, we find that there are old people’s homes that will not admit you because you have HIV. This is a reality, even if there is a pact for non-discrimination. He also sees himself as a patient: “All those vulnerabilities that we people with HIV have as we grow older need to be treated as they should be treated. In that, there has been a lot of improvement, but it is very important to take care of the relationship between doctor and patient, we have to talk to solve the problems”.
Video: Julio León.
Jesus has been president of Adhara and a peer educator for years now, but he looks to the future realistically. He always imagines himself doing something in the social field. “It doesn’t have to be working in HIV; I think there needs to be a generational changeover. There will come a time when I will no longer be a reference point because I am too old and the person who is in the hospital must have gone through situations that I have not experienced, such as chemsex. I will pass into the background.
And then he blurts out another one of his, out of the blue. She makes me laugh until tears come to my eyes: “Now I lead a quieter sex life and the young people are in a different mood. I don’t have so much sex anymore because they don’t let me, not because of anything else, not because I don’t want to”.