Testimonial of a HIV Positive
The story of one seropositive, from the beginning; I could only give in what happened, my father… Sebastião Afonso de Souza
“Rejected by his mother and stepfather, at age 12 Claudius made the streets his new home. Between cold, hunger and abandonment, it matured rapidly. He knew hell closely and then heaven. It was at Fatima's hands that he came out of the mud. He won some clothes, a pair of shoes, a roof, and, most importantly, a job. Growing up at work, I was taking time off. For Claudius, the AIDS it was a 'others'' problem, it would never happen to him. From 18 to 32, 'ran after injury'; Every day I went out with a girl. As for AIDS, 'catch yourself, catch', he used to say. He got… He lost his job, his house, his friends… But he raised his head and rediscovered the dignity and value of life after becoming an HIV-positive... "
The picture is from 1969 when I was five. I do not know why, but I have the impression that the look of that child could already somehow see, on the horizon, the immense storm that would rise over him someday ...
My story is, I think, very common. The fact is, I know some people who have gone the same way and are out there, touching their lives. I left home as a child, twelve years old, not bearing my father's violence; I went to find my mother, who had run away from home two years earlier, after an adventure. It seemed natural to me to seek her, her refuge, her lap, her affection, her protection… But I remember well that my possible stepfather (executioner) told her that I would not accept the son of a bitch in his house. … None… My mother, always lukewarm in character, accepted this with the submission that was always her own when something suited her and referred me to the streets, where I lived five years, between cold, hunger, crime, discrimination , the abuse of every order…
"You have to love people like there's no tomorrow."
I will not narrate every winter, every day and every hour; each imagine for themselves what life on the street is like.
But, I assure you that no one leaves them without someone else's help. No one escapes from hell alone without help. You may survive indefinitely in hell on your own, but to get out of there you will undoubtedly need help. It's a vicious circle where you can't get the things you need because you don't have them. There is no home because there is no work; there is no work because he does not take a shower he doesn't take a shower because he has no home and so on, like a perpetual motorcycle.
But for me there was this someone. My someone, my angel, was a woman. Of these, the absence of popular wisdom calls it "woman of life" or "woman of easy life" (come and live this life and you will know how easy it is).
There was a nun or a lady of the benevolent society, or a lady of the league spiritist or wife of an evangelical pastor.
He was a prostitute.
This label leave because of you that read and discriminate. I even call her Angel.
It gave me a place to sleep, to take a shower, two pants, three shirts, and a pair of tight shoes (I'll never forget the tightness of those shoes and the joy with which I put them on) that you bought at a used store. And the main thing: He got me a dishwashing job at a nightclub in Sao Paulo - the Louvre - which already closed at least ten years ago.
Was poor - life was cruel to her - my Fatima. Someone, for whatever reason, burned her face with acid. They say revenge.
I don't know what kind of acid, I never minded knowing why. I know the damage has been great, and a person who lives on selling his favors needs to be beautiful, has to be attractive. A black spot covering 50% of her face and part of one breast didn't help much and everything was very difficult for her. Fatima faced difficulties, even an epilepsy that, according to her, was a consequence of the attack she suffered. And faced many humiliations, from customers and fellow employees.
This all did not serve as an obstacle to it. Did what he could, and certainly not what I was able to rebuild the minimum level of human dignity.
This angel came in and out of my life like lightning. Three or four months. He disappeared without saying goodbye and without giving me the opportunity to thank him. He left the laundry bill paid and a month of paid room rates at a hotel in the trash. Thank you here and I hope you will read me, remember and know that I am grateful to you, that I have never forgotten you and that I will never forget you, nor could you. I don't even know if her name was Fatima really or if it was a fictitious name. This has always made my search for her very difficult and without tangible results. I never saw her again.
I have since wondered who my mother really was: the one in whose womb I dwelt and whose milk I drank, or that other… which society has reneged and labeled as it wished, after using as it saw fit…
I could never come to a definitive conclusion about this. But it does not matter. Interested in what she did.
The fact is that, having regained dignity, I also regained consciousness. And that made me think. Thinking, I hated my mother with all the strength of my being. To the most sensitive souls who clash with this statement, I offer my five years of darkness, fear, cold and hunger as a parameter of reasoning. Maybe it should be enough. If that is not enough, I offer the punches and kicks I have often exchanged to secure a sandwich.
Hate is a feeling like no other, and to be extinct, or something that requires time to compensate.
Many years passed like this, without my worrying about whether she, my birth mother, lived or not, whether she was good or bad, I didn't care about her fate. It was a matter of reciprocity: her indifference to mine.
It seems fair to me. Very fair.
But this same indifference was buried hatred and hurt, the pain, the fear, the anguish of knowing me without mother, without origins.
At the club, it wasn't long before I made friends. In a year, I was the house soundtrap. In fact, the sonographer's helper (that's what they call DJ today). Many girlfriends, every day a different one, never settle on any.
I certainly think that I was trying to make up for lost time, the absence of affection and affection, the lost years of my adolescence. I rocked into this madness and never stopped. Between 18 and 30 years old, all I did was "go after the injury".
I knew, always knew, the existence of AIDS. I had seen some people die from it, completely excluded from the group to which they belonged. But I thought it was a problem for others and it would never happen to me, but I also had one thing I thought: if you "get it, fuck you". Fuck it!
Well, I ended up just like that, fucked up.
But before dancing, I had fun and I was happy pacas (in a way, I still am!) I changed my girlfriend every day and sometimes more than once a day.
And for those who think I'm counting “blackcurrant”, the guy in the strange colored shirt is me, in a 25-year-old version, when I came to the position of broadcaster, entitled to a press card. In this video, there is a person whom I loved as a father and, in a way, he was that for me, instilling me the bases of the concepts of morals and ethics, responsibility and respect, which I could only truly establish in my life, after diagnosis by HIV.
I walked away from him the day I was absolutely and irretrievably sure that he was ashamed of me for assuming my status as a carrier and HIV, and based on that, much that could have been done to improve this work was not. This is done because he prays for the booklet that teaches that the sick represent failure.
It Hurts guy! It hurts you pretty damn son of a bitch
Some do not even remember her face. Other, keep at least the name. But there were some that marked my life as much as her, my angel, differently, but flawless.
Simone, Flavia, Deborah, Dayse, Cassia, Paula, Ana Claudia, Claudia Vieira, Laura (a case apart), Raquel, Potira (Indian, even from Xingu). I loved each one ardently, and I believe I was loved by them as much as a man who, according to themselves, would never belong to just one woman.
Not all left happy. Some went out of my life at war with me and with life. But life and war have something in common that I can't dissociate…
But there was, in particular, someone named Gabi…
Ah! Gabi… Let others not know your existence. Let it be between us what happened between us.
You, who kidnapped me at a dangerous dawn, made my life a roller coaster full of surprises, joys, upsets, kisses, hugs, lights of all colors and hues, bells of all shades…
You who loved me and left suddenly as in the sonnet. You, whom I loved as I had never loved you before and who taught me that we have no one, just shared moments and that you have always been faithful and loyal to me, as you could have been loyal and faithful, charging nothing, not demanding anything, that were it not understanding, complicity and affection. I was your accomplice, you were my goddess, and we walked for a long time, side by side, with our eyes on the horizon, searching for something we never knew what it was…
I suffered a lot when you left, you know, you remember… but there is that… If I still have your taste, you will surely taste me…
But I played life forward, kept listening to my records, cheering up my dances, kissing my girls, enjoying life with friends, sometimes in the middle of the day, until almost noon. A very crazy life, full of ups and downs, loves and dislikes, affections and disaffections, buildings and ruins. But I became disillusioned with the night, which no longer offered what I was used to expect from it. The night changed, was no longer a romantic thing, but a banal trade in bodies and drugs. It saddened me. Not what I wanted from life. Maybe it wasn't the night that changed. Maybe it was me who changed the way I saw the night.
And along the way, somewhere, with so many blunders, a virus is installed on me silently and began his work. I knew nothing.
My dissatisfaction with everything made me want to change my life, wanted an alternative and could not find it.
At 30, I met Simone. She, a woman from another world, got up at six in the morning and worked all day. It was the sun and the moon, I was the moon… It was interesting to wake her at six in the morning with a thousand jokes and jokes, causing her to smile early and leave excitedly for work until six in the afternoon when I would meet her and we would walk until it was time for me to go to work.
At this time, she emburrava and said: "Claudius, this does not give future. You must change your life. "
It was she who introduced me to this entity, the computer, and I spent the first rudiments of the art of using it even without understanding. It was the beginning of change, it would be gradual, painful, difficult, but I would do for love. However, she did not have the patience to wait this transformation and left me on a Saturday night without explanation.
All that was left was the memory of a fast, torrid, crazy, hot romance… It struck me deeply. I believe I loved this woman and when I lost her I became very sick with depression.
At first diagnosed influenza. I tried as influenza during 28 days. It was a viral meningitis. Entry Dei Hospital Bandeirantes between life and death and remained hospitalized a good time there. The doctor, I can not remember the name, asked me permission to do the HIV test. In that state, I authorize anything and when I awoke on November 13 1995 at 15h43 me the result I expected:
The world collapsed for me. I discovered, in seconds, that all was lost, that in a few days I would dry like a plant in a vase without water and die.
I was scared, panicked, and terrified. He knew nothing about the disease. Just that it was fatal, it would kill in a few months. I had never cared about the news about AIDS; in fact, I knew nothing, it was a problem of others. I cried and thought about killing myself, but I thought the least that could be expected of me was to bear with courage whatever was to come.
So, as you see, do not kill me. I decided to wait and endure the consequences of my irresponsibility of my carelessness. It was the least to do: stand with decency the consequences of my carelessness.
I remembered that just before, I had a girlfriend, who had never used a condom (Simone). I thought you killed her, that was my fault and mine alone. It did not occur to me that it could have been her who transmitted the disease to me. It was a palpable hypothesis, but I didn't see it. He knew he had to talk to her, warn her, give her the opportunity to know and prepare as best he could. It was very close to Christmas and I decided to wait for the year to end. It was a tough bar to wait so long. This one made sure to drag on. I knew that I had an obligation, a moral duty, to warn her to have the same opportunities as me to treat herself and fight for her life. But there was the fear of her reaction, of what I would hear from her, such a dear person, so loved. After these holidays, I didn't have the courage to speak. Each day I invented a new excuse for myself and stalled for tomorrow. A friend, a dear friend, did it for me, at my request. He told me that he regretted the very second he revealed to her what was happening to me, that it was difficult to calm her down and keep her on the axis. But he did the tests and gave negative results over and over again.
It was a great relief to know that I didn't give her the virus. I don't think I could have endured this guilt. She disappeared, preferred to ignore me and forget. All he has done since then has been to write me a letter in which he said that he would cherish forever the days and nights we had spent together ... Patience. He also mentioned the intention to donate a staple basket every month to the support home where I lived. To hell with her and the staple basket. That hurt a lot, but today is over, everything passes to indifference.
By failing to maintain a stable relationship ever, I found myself alone, no friends, no one to support me by not having anyone who really loved me and I loved not know. I hid in fear and shame.
I lost my job, I lost my house… In fact, a hotel room on Aurora Street. I was abandoned by the supposed friends I had. That's life. Not sure if I can trust people. They are like pinwheels and change over time. And this is unpredictable.
I live in safe houses, streets, and knocked his head a lot out there. But time passed and I did not die. Not dried up like a plant in a vase without water. I discovered that life was possible even with HIV, and that porting it did not mean a death sentence. So I decided to fight for my life, for my dignity as a human being.
During this period, among many things, but my self-judgment, in which a judge was ruthless, a tenacious prosecutor and a weak defender, I considered myself responsible for many things and, in the process, I took my mother to the court of my conscience, bound and gagged, looked at her, I was filled with pity and decided to forgive her for.
But to forgive mentally was not enough, it was necessary to bring this forgiveness to her in one way or another. It was necessary to find her, to find her, to embrace her and to leave her past buried in the all-consuming sands…
It was a long and diligent search. I am skilled at finding supposedly lost things and people. (The only flaw was not finding Fatima, but I believe she doesn't want to be found, missing without a trace.) Something I learned at night, on the streets, in life…
The Reunion with Mother
When I found my mother, three years ago, I met an aged woman, tortured by time and remorse, clinging to a God she does not know, torn by a cancer she did not treat and took the symbols of her motherhood (…). (Justice is done, whether we like it or not, and it is always done at the exact point where we fail, pointing to the exact failure of our character. Just look at ourselves and we will know where we are going wrong.)
We talked a lot. I realized she was losing what little was left of his sanity, clinging to ghosts, illusions and regrets later, but high amounts.
I never saw myself as someone pitied. And not even know where my hatred of other years may have generated bad energies that have hurt so intensely.
But pity is not love. And also delayed regret is not. And it is love that drives the ship.
One way or another the bond of love that unites us has been broken and, I think, will never be resumed…
Especially because there is more time.
The cancer that tore her apart and she made a point of not treating why the Lord would heal her (He heals but does not dispense with the efforts of doctors and the sacrifice of chemotherapy) has spread and is consuming what is left of her life, if it is. that is not over with everything.
The last time I saw her was evil and indifferent to me. I did not try to know anything else. It is the concept of reciprocity coupled with the awareness that I have to suffice myself.
From the positive diagnosis, I felt a huge contempt for myself and the life I had lived until then. I decided to start over. I tried to learn a little more about computer science in order to make a living (I owe it to Simone). I learned enough to be able to assemble the machines I use and occasionally do some maintenance and get some change. Today I already do some sites… Not much, but I'm taking it. I have bigger projects, but I lack resources.
While living in the house support, thought I would go crazy for the lack of life perspective, the lack of a horizon, the lack of hope. The support homes meet a particular social role, but that was not what I was looking for. I did not want a place to wait for death to come, wanted to fight for my life, I understand the magnitude of how life.
Suddenly everything changed, almost casually. There was a new patient in home support, Waldir, very weak, he needed to go to the Day Hospital daily. There was no one to accompany me and asked if I would do that.
I said yes. After all, it was an opportunity to be helpful and more than a chance to get out, see the world, people, lighten my thoughts.
It was a relatively simple routine: in the morning I would give him a bath, clean his bedsores (I had to learn a lot about human frailty and recognize that it could be me in his place someday…), do the bandages as the nurse had taught me and forwarding him, step by step, to the ambulance, known as "pope all", an irony without limits ...
Arriving at the hospital, he would put him in a wheelchair and take him to the third floor, where he would be placed on a bed and given intravenous medication. It was there like that all day.
I didn't know what he had, but it was terrible, because he barely supported himself on his legs. Need support to go to the bathroom, to eat, for everything ... Even a glass of water he could not hold. Still, I found time to meet the other patients on that floor, and I went as far as possible to make friends, to know those people, their stories, to make them my family. I even gained the trust of the doctors and nurses who came to see me as a helper, someone else to collaborate with.
Sought wheelchair, pushing gurneys, did everything he could to help.
Brought water to a patient, nurses warned about the serum that had the vein that was lost, I learned a lot about the routine of a hospital and I owe it to each of the people who had the privilege of serving.
But it was during this period that I learned to appreciate not only their lives, but the world itself. The world gained sound Dolby Surround and color Technicolor. Every person I saw, even a stranger, seemed too important to me to ignore him. A shrieking bird was a sign that I was alive and could hear it. Life has become sacred to me, too important to be wasted. Each day, each second has gained a major importance in the way I perceive things. It was being reborn, a different birth, in which a young adult comes out of an old adult, like a butterfly that leaps from a cocoon with Herculean effort, seeking the warmth of the Sun to spread its wings and lift its proper flights. . Much of what I relearned from my life, I did it inside a hospital, where you struggled for life every moment and you couldn't always win. To love, not for fear of death, but for the importance of life, which is the most sacred thing we have, the gift of life, which always finds an alternative if you give it an opportunity. So I decided to give every possible chance to life, and it has given me all the returns I am able to receive.
But let's get back to the people. Among those I met there was a girl named Mercia who reportedly had reached the terminal stage of the disease and had managed to return (…). It was the effects of combination therapy that were beginning to save some lives.
Mercia contracted her husband's HIV and was taken aback by a positive diagnosis of HIV due to a host of opportunistic infections that attacked and killed her husband within five months. She wasn't cool either.
I always wonder how a person starts to get sick from this or that and no one bothers to take a closer look; I also wonder how one does not realize that something is wrong and lets it go all the way to the "god-giving" ... It must be the fear of knowing, but not being aware does not mean that the problem does not exist. And if there is a difficulty, it is best to face it head on, preferably in your territory.
But when I met Mercia, she was better, she was back on her feet like a hatching duck. I always said that to her, who smiled ... And was full of hope, thinking of a fresh start.
But he had to be there every day and receive intravenous medication. The bites the tortured, there was no vein could be found without a search 30, 50 minutes. And she wept at the sight of the needle. I think that the situation worsened further in his veins. I always passed through there at eight thirty in the morning to try to help. Embraced it and was talking nonsense in her ear. He spent sung in hairy girl 37 years, and she laughed like a child. At least if distracted, and damned needle entered, taking life, improvising survival.
That lasted about two months, and she was discharged.
Meanwhile, the Waldir was getting worse every day. But I do not remember having seen or heard a single complaint, one tear of pain, nothing. An unspeakable dignity, courage, to me, completely unknown.
After all that work with Waldir, won a weekend like this. Could revise some people whom I still love, pledging to return on Monday. I admit that was a relief. I was tired of pain, suffering, distress and feeling helpless. It was a weekend when I should have relaxed. But I could not. Waldir thought of all the time.
Does are feeding? Will give it a bath? Is he cared? Did he thinks I abandoned him?
It was a sea of questions and, on Monday, collapsed at home support, looking for him.
A cynical smile from another patient and notification:
“Waldir is in the last. We've even shared their stuff. Here is like that…".
I fired at the hospital, fourth floor, practically forcibly entered. I wanted to see him, to say a few words, to hug him, to apologize for any mistake he had made… A handshake, anything that might seal our friendship at the moment of his departure.
The picture I saw was horrifying and I immediately understood why try to stop me from seeing him.
Waldir didn't recognize anything anymore, didn't see me. He looked around himself as if seeing other people, other things… Within the new context that approached him, I meant nothing.
I left the room in silence, eyes moist, hardened heart, hurt myself and with life. I aspired to elevate it to a better level, which could enjoy more and better the gift of life. He considered that my "off" killed him.
I sat in the waiting room and waited notification. It took more than 19 hours before it was over and he could finally stand.
I called the management of the home support who asked me to look after (sic) funeral.
I had never dealt with death so closely. Papers, documents, certificates, autopsies.
Miliary TB (spread throughout the body), as explained to me. It killed Waldir.
After three days, his body was released in a cardboard casket, painted black, fragile as life itself, from those very cheap, and we, the driver, Waldir and I, went to Vila Formosa, where he would be left. I remember the expression on his face was serenity as I saw him well before closing the coffin…
There was no one to help me carry the coffin to the grave. The driver refused. After much begging, I got three people who were attending another funeral, aid in completing this me, that was my last service to Waldir.
I couldn't, because I didn't have a penny, to plant a flower in that grave, I don't even know where it is…
Back to the Streets
I went back to the support house and cried. That's all I had left.
I definitely felt that this was not my place, I could not fit myself inside such a place. I looked for another support house and again did not adapt. I preferred the streets, where everything is more difficult, but at least it could determine the directions of my life. I went to pick up cans, cardboard, bottles and make some money. It was a war. I worked as a street vendor, sold virtual pets, sodas, anything and everything. Often having to defend my right to work on the basis of punches and kicks, just for a change… I redo my life slowly…
Sometimes, the money I earned made me a choice: eat or sleep?
Chose to sleep in a day and eat the other, if luck was better. But I've been capitalizing on growing redoing me without panics, but with some uncertainty.
Months after leaving home support, I entered the CRTA to take care of myself and came down the stairs eight floors. I went to the top of the building, because I wanted to have the opportunity to find the largest possible number of people you know. Going through all the rooms, just rediscovering Mercia, who was dozing, eyes open, very depressed, so depressed that I was scared. She also was startled by the sudden arrival of a person and agreed.
There was not much to say. I could see clearly that it was the end, I had already learned to identify the ongoing death. And she told me this:
- Claudio, I'm tired. Do not want to live. I no longer take any more all this.
Even without hope, chid her and said she lived, who fought, who do not give in now that he was so close (to what?), Who followed only one more day, she lived one day at a time.
She told me that she had been living one day at a time for a long time, and after that she lived one hour at a time, now counting the minutes…
I stayed with her as long as I could, but I had to leave. It was a Friday, and life was calling me out, demanding obligations and commitments…
When I said I was leaving, she hugged me and thanked:
- Thank you for everything, Claudio
I cried, as I cry now, and I had no word ... It was the last time I saw her in life on Earth. He died at home with his own, who were somewhat relieved (…).
I was scraping by as best I could, working as was possible, knowing the close of prejudice and feeling like your blade is sharp and cruel, insidious and treacherous.
Employment? Not a chance. Nobody employs a person who is absent once a month. I'll turning.
I married a girl, adored by me, who didn't have the virus and doesn't have it to this day. Whenever we have sex, we use condoms. We know that our lives are more important than the absence of latex, we seek to respect and love each other.
In order to stay alive and healthy, I strictly follow my medication prescriptions regularly every few hours every day. It is a bar. Difficult to control, but essential. I use a calendar, a computer, and friends, as well as my beloved wife, so as not to miss schedules. I am administering the drugs like oxygen in a sunken submarine.
Today I keep my website (Www.soropositivo.org), while waiting for a cure or something else, whatever it is, even a sponsorship. I have goals, I want to help change this situation of discrimination and, if you can not do it alone, at least I can lay the foundations for a more decent living for people with HIV.
I'm gathering people around me. Not me, but my ideas, it will spread slowly and constantly, until a wave is uncontrollable.
Maybe I don't live to see it. But it does not matter this point.
The most important thing is that like me, other people have a story like mine and are alive. I'm not a miracle, I am not an exception.
Life is always possible, even with HIV.
It is necessary that people become aware of it.
We are alive and we want to stay alive.
We are heads of household, breadwinners of families, responsible for our destinies.
We have the same obligations as all other people. It is quite consistent that we have the same opportunities. It's not fair that we be excluded from life just by being sick and in terms of dealing periodically.
We are worthy of respect as human beings we are.
We are worthy of love as anyone else.
And above all, we are worthy of life.
Solidarize not me. Sympathize with the world that is yours.
Claudio SS - Webmaster, 38 years old - A positive since the 30anos - Piracicaba / SP
PS The person to whom I referred to as my beloved wife, whose name I have not engraved before and not now, was a kind of private demon I had who came to the supreme point of saying, “What a sickness of shit you have” !
I know that after the book was published I had a look at any post that I didn't put her name on the book (vanity of vanities, it's all vanity0 and some time later, no longer enduring her bad mood, Saturday morning I I woke up and wished her good morning twice and she answered me like this:
"How can I have a good day if the first person I see is you?"
I seized the opportunity as the squirrel grabs the hazelnut:
Do not worry then because in a little over a week I will have left this house…
and, Go away? Will not wait or Christmas.
I said that my illness and I could not stand to see her face, in a regime of reciprocity in which the most urgent was to undo the couple and that was how, a week later, I was already settled, badly and poorly, in São Paulo… the rest is life that runs and you'll only know when my book comes out, memories of a man of the night
Here I found something to add. A Queen song called Spread Your Wings. It was my first effort to translate something, and looking at it now, here in 2016, it seems that I unknowingly translated my own prophecy…
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