My name is Leonardo Magno Toron. I live in the center of Rio de Janeiro. I have been HIV-positive for 21 years.
I knew that I got infected in 1988 from my long-term partner, and we went on having sex without condoms. At that time, a lot of my friends were dying. I thought to myself, “I will not have the test done, because if I have it, I will be dead in six months, one year’s time. I will let the bomb drop.”
I eventually moved to Germany, and graduated from the Circus school, as an acrobat, and went on to work as a performer. I worked over there for four years, and completely forgot about the whole HIV thing.
Around 1998, I got very ill. I remember that before I went into a coma a doctor asked me, while I lay on a stretcher, whether I would like to have an HIV test done. When the results finally came, I was worried about my partner, and that was my sole concern. I myself was somewhat aware that I might have the virus anyway.
I see now how important it is to get tested because I could have died. In my case, I had a break in my life, a cut, of 5 years until I regained my health. Because of advancements in medicine, if you get tested as soon as possible you can have better results. I believe that that is today’s issue.
What got me out of this really bad state of the disease was the support I had from my family, from my friends. Also, having a very rule-bound life, eating well, practicing meditation. I think it is very important for HIV-positive people to not just take their medication, but to be surrounded by a whole support network: friends, family, and a life that has meaning, some kind of goal. Today I have this goal through working with HIV-positive people to lift their spirits, and to make them see that there is hope, a light at the end of the tunnel.
I have been taking the same medication for ten years. My viral load, which was four million back then, today is zero, undetectable, which means that the exams are very good. Not that today I’m free from suffering, from problems—that is part of being human. It’s obvious that life is not only about HIV, it’s not just one problem. Life as a whole has its difficulties with or without HIV.
When I started to photograph my apartment, looking within and without, I realised how I turned my surroundings into some sort of cave. It is a psychological side effect, where you isolate yourself from the world. I can tell myself consciously that I do not find any problem in HIV but the truth is that there are many social barriers as to whom and where I can say that I am HIV-positive and how much I can say about it. Since I work with HIV-positive people, I often see the difficulties from prejudice, stigma—all the many doors that are closed to HIV-positive people despite perfect health.
When I nearly died, people found out about it. I did not have the choice of telling them or not. All my work options were taken away from me. Today, after many workshops, I’ve started telling friends that did not know about it, one by one, as an attempt to exit this cave and to bring some light into my surroundings and eventually to my subconscious.
Our minds work in complicated ways. The reality is that I knew my first partner had infected me. But in 1993 I went to Germany and my life changed into a new direction. In 1995 I had a new partner with whom I lived, and the whole HIV thing was not in my conscious mind anymore. Until I had neurotoxoplasmosis, which causes lapses in memory—for instance, I would not be able to remember whether I had locked the house door. Because I was an acrobat, I had a very strong physique, and the deterioration of my body happened slowly. Eventually, I could not ejaculate anymore. My partner thought I was seeing other people, and he asked me to have relations without condoms, to increase the pleasure, the intensity of it. I would initiate it but then avoid the situation.
If I had been tested earlier, I wouldn’t have fallen ill. That is why I campaign for people to get tested before it’s too late. But I was in a different country, a different reality. All that day-to-day contact with AIDS had disappeared—the friends who nursed other friends through their illness. Once in I was in Germany, away from that reality, I ended up forgetting about it all. It was perhaps a conscious denial, or fate. Who knows?
If I had still been living in Brazil, I would have had the tests done. The doctors in Brazil are very caring. Over in Germany I went to various specialists and no one could tell what was wrong. They told me I was okay, nothing was wrong. That was four months before I got ill. Later I was told that the toxoplasmosis developed in my brain throughout a period of two years.
There are positive and negative aspects on both sides. In Europe, where the population is better informed and educated, the epidemic is under control, and perhaps the government pays no mind to the issue. The technological resources over there are better but the doctors make a lot of mistakes.
In Brazil we do not have the resources or appropriate medication—it is a lie if anyone says we do. We only have access to antiretroviral medication. There is great pressure from the AIDS NGOs in Brazil for this matter to be sorted out. Many people do not have access to the proper treatment. I personally have a private health plan, and I only get the medication from the public health centre—the antiretroviral medications which are free for everyone. But if I need any other type of medication I have to pay for it with my own money. Meanwhile in Europe this medication is widely available for an affordable price.
In Brazil, it is convenient to invest in antiretroviral medication, as it keeps people away from the hospitals, which have no infrastructure to provide them support. Also there are more and more young people with HIV in Brazil, and it is very important within a capitalist system for these young people stay productive. In Germany people are professionally rehabilitated, not for the purpose of generating wealth, but to increase their self esteem.
In Brazil, people have access to expensive medications but have no money to eat properly. It is rather complicated to be in a situation where you have the treatment but no protein or vitamins to sustain your body through the treatment.
The campaign promoted by the Brazilian government is renowned worldwide, but for us, who know the reality of it, that is not really the case. There are inequalities in every district. There might be medication but there is no infrastructure in hospitals, both in the private and public health system. I am terrified of ending up in a hospital, even having a private health plan. I have friends who have passed away in private hospitals due to medical error, or inappropriate treatment and diagnosis.
I used to work at an organization assisting people who had just found out their results and came over looking for a doctor. Basically, they were given the results but there was no doctor available to treat them, everywhere was full. There was no continuity to the treatment. They did not have a clue of what was going on. They quit their jobs because they believed they were going to die. It was exasperating.
The reality of it is much harder than they let on. The whole health situation in Brazil is precarious—it’s very bad. It is a lie to say that Brazil is a success story regarding the issue of AIDS.