Foster Child (M), 16
On the exposure of his diagnosis
About my appearance on television.
There were times when, to help secure sponsorship, we gave interviews. About different subjects - including talking about the virus. They came and shot in the house, in the yard with my brothers...
They said that we had had HIV for some years; that we lived in a children’s home, and that I had a period of time when I was in a worse condition - much worse - and I stayed for six months in hospital. I was in such a bad way that nobody thought I would recover. But I got myself well.
Now I don’t like to appear on TV because - each time they came to film us we accepted, believing we did something good for ourselves, and for others, by accepting to be interviewed.
But it was both good and bad because - not everybody understands. Some of our neighbours accept us and others do not…
…One day in the park, where the town council built swings, we were playing with some girls when one of them said - “You know, this one has got AIDS. He shouldn’t play with us any more.” We [didn’t mind so much] because they were little - 5-6 years old - but even the older ones reject us.
I like that most of my close friends have remained the same, even if they know.
We once appeared in Libertatea when they celebrated the 10th anniversary of M----- Hospital - the hospital I go to. It was a disaster: TV cameras, press, Libertatea – considered the most important newspaper – Antena 1, Pro TV. If these two are present, everybody will see.
My friends, who read the newspaper, told me. I did not know I was in the newspaper. Next day, first hour, there I was. I asked the friend who told me he had seen me - what did they write? That I had had the disease, for ten years…
But they treated me well. Another friend of mine, trying to encourage me, said - “They wrote good things”. He didn’t tell me what exactly. I asked a younger friend: “What did they write?” I swore a little - we allow ourselves such liberty. He said: “They wrote that you were sick, and that you don’t really want to talk to your parents.”
A lady from our place bought the newspaper and we read it too. It wasn’t… there was a photo, I was there a little - our eyes had been covered, but our friends recognised us. And it was written that I had been ill for ten years and that I didn’t want to talk to my parents.
I feel, somehow rejected by my friends… not by all of them.
On his adoptive family
What can I say about my family? If you’ll allow me - with quotation marks. I feel myself very lucky to have gotten here, thanks to some good hearted people. And God’s help first of all - who gave the desire to those people, to take us into these homes.
I can consider it a normal family, because we have a dog, and a budgie. We used to have a cat, too - but as everybody knows, even if you give special cat food to them they keep eating rubbish, and as a consequence they may die. And so it happened to our tomcat.
I get along pretty well with the children - from time to time we might quarrel a little, or have a small fight – a kick in the butt. We listen to music, we watch TV – I usually prefer action movies… …documentary movies about planes, about the way the race cars and the latest 21st century planes are being made… documentary films about ancient history, about the Egyptians. I like spending a lot of time with my adoptive father - talking to him, watching TV, discussing all kinds of things… We might repair something in the car. We make things together. I like this very much - spending time with him. I guess that is all.
Could you tell us about your first day at state school?
My first day in a normal, state school - I say that because until last year I had never learned in such a school - I’d just passed by it. I’d visited other children during winter celebrations, seen the children - but I didn’t know what it meant to be by yourself there... …I can say I felt a little emotional and a little afraid. It seemed new to me - I knew nobody...
…It happened I was with my sister, and another friend. Despite this we were still a bit frightened. When we went into the schoolyard, we were with our adoptive father, and we didn’t know the way. There was a big line. Because it was the first day nobody knew the way – actually, most of us were in that school for the first time…
…When we entered the classroom, we saw the children who would be our classmates, and the lady who was to be our form teacher. We were asked about our parents and I got scared a little - we were given a paper to fill in, and of course I gave normal - not false – information. That was my mother’s name; I didn’t know my father’s, I just wrote a name - we froze when we were told that nobody knew we were from a children’s home…
…The form teacher was informed (about us), and she said - “What have you done? You were supposed to write the truth, you shouldn’t have said that X and Y were your brother and sister…”
…We quietly began to talk with our new colleagues. Of course, we have this disease, and we are going to have it, all the time until we die. But the problem is - we discuss all possible subjects, and sometimes we feel the need to talk about the disease with our mates. But we are afraid to say, and I am fearful - “Lord, may I not slip a word!” Because they don’t know my situation.
When there is discussion at school about this virus, I notice that those with the virus do not have a good image. Even if the others don’t pay attention to it, they are still afraid of those who have it, and might mock them. And we are afraid to tell them - especially after that incident in our neighbourhood, with our classmates, because…
Which incident?
About the virus. We appeared on TV, and they began to be afraid - that it might be contagious and they might become ill. Even though our mates never knew we had the virus – it’s not something conspicuous – it can’t be noticed, especially as long as you take your treatment. It doesn’t show symptoms as long as it has an equal adversary, from what I heard…
What can you tell us about your treatment?
When I was younger - in the eighties, when I was born - the medicines were not so good. There was great poverty, conditions were not sanitary and people were not nourished.
But after the 1989 revolution, which Romanians definitely can’t forget, stronger and better medicines – like there were in other countries – began to appear in Romania too. Those medicines appeared in countries like Great Britain or the USA ten years before they appeared in Romania.
When I was three, I began taking treatments - which were not exactly fantastic. It was AZT, which is still administered to HIV patients. We blamed a child who was in the same situation as us. He also came to the organisation from the hospital, and we blamed him - “We began taking medicines because of you, before you came we took no pills.”
I understood later that it was not his fault. There had been a great medicine and food crisis. And the doctors usually bore the guilt for our infection...
…Over time, stronger medicines and more effective medical devices appeared. We began to go and have photos taken of our lungs. We used to get into an iron device which was able to make a picture of us, but it wasn’t like in other countries… But the more time that passed, the more technology began to develop in Romania…
As time went on, I could say I was among the first children who tested, so to speak, some medicines. At the beginning, there were tests on people who had offered voluntarily, and those people were indeed helped by the medicines, and their health situation was somehow balanced. Later they began to administer them to us - the patients from M----- and Colentina Hospitals - and our bodies suffered or coped with that treatment, because some were weaker and others stronger.
In my case, my body was more resistant to that medicine and could fight - I mean I was able to get used to the new medicines I was taking. I remember the oldest medicine I took was AZT - which is still being administered now. Later there was a red pill. My urine used to be red – ‘scuse me for saying this – I guess because of that pill. I am sorry, I can’t tell you the name of that medicine - for the time being I cannot remember it. But the most recent medicine I took was Clixivian, which is still being administered to HIV patients. There is another one, Rivex, or something like this, and the latest one - in the last two three years a new medicine has appeared - the newest one, Amprenavir, which is the source - the bodyguard of our body to prevent the virus from developing.
This doesn’t mean it can make it diminish, because it isn’t strong enough… but I guess the scientists were satisfied that the medicine was pretty good.
…Now, I recently heard that in Great Britain or USA - I can’t tell you precisely 100% - the scientists are working on a new medicine, a kind of vaccine. And they said that the virus will be immobilised in the human being, as though in a box... …This is what I got from my personal doctor, who has been taking care of me giving me pills for years - I mean Dr S----. I guess he knows every inch of my body - each particle, each blood vessel, body part. I was among his first patients.
So, he tried to make me understand - drawing on a piece of paper - that the virus is in a cell, which it wants to destroy if it can - but how does it get to that particle? It is a kind of circle - and that circle is cut, it has some cuts, and those cuts allow the virus to enter, destroy that cell and create new viruses.
But those vaccines will make those cracks close themselves, destroy the virus inside, and not allow it to produce more virus here.
Only this I can say about this new medicine - because I want to return to this Amprenavir - no, not to Amprenavir, to Clixivian. And that is because it gave me a second chance to live. I say this because I felt very bad at one time - I felt very bad for six months. I lay in bed, and I was looked after by this doctor and his boss. And I had the luck that in Great Britain - the chief of the organisation told me she had a medicine which might do me good, and help me recover.
They brought it to Romania, and the doctor spoke into my ear, as I could not see but only hear - that he has new medicine, which might do well for me. That was the Clixivian - and he asked me if I accepted it, and I said yes.
And as you can see, it seems to have worked.
Can you speak about when you first learned about the virus?
…I learned about this virus when I was at kindergarten, or towards school time. We began to read little by little - by syllables - and when we used to go to the hospital, we could read by syllables A-I-D-S. …We didn’t understand, we knew nothing at that time, we only knew we were taking pills and could read AIDS, HIV, and there were drawings too. There was a picture with a man, a woman, and their child. We didn’t know what it was.
Later, when we grew and we could read the words and texts, there was a sudden curiosity in me - that people should tell me what my disease was. Do I have this one? Or this one? That’s why I take this pill? These were my questions.
My parents were in a kind of panic, because they didn’t know whether to tell me or not. They were concerned not to scare me. At a certain moment, I don’t remember exactly when, I said: “I know I have this disease!” I didn’t call it HIV or AIDS.
…“But who told you?” my adoptive mother asked me. “Who told you? Did Dr M----- tell you?” …We were angry that things were kept away from us - we began thinking about this virus in a more curious and intelligent way...
And I said I do have this virus. I don’t know but this is what I think. We began reading about our diagnosis, secretly. I once talked with my adoptive father about the virus and he told me - if I wanted to find out about this to ask Dr S-----. I told him, it’s clear, we have the virus. He was hiding.
But before he told us - I remember once when I was in hospital, and a nurse took some blood from a child. And some time later she came with a sad face, and told the diagnosis to the boy’s mother. The mother heard, and began crying. She was told something like: “Your child has HIV.” She told her he had had HIV for ten years. And I said to myself, “for ten years - well we are ten, that means since I was born”. I realised 100% that I had that disease, and I began crying - I didn’t have my mother, so why do I have this disease?
And later I asked Dr S---- about my disease, to clarify it.
He organised a kind of meeting with me and my friends who have this virus, to inform us - how it can be taken, the way we should protect, why must we take the medicines…
…I was interested, I was curious. I didn’t react, “But why me? Why…?” I go to some classes, and there a colleague found out that she too has this diagnosis. [I talked with her], we talked about diagnosis, and she told me that when she discovered her positive diagnosis she began crying and worrying. She asked her mother, she got panicked, she didn’t know what to do - she was somehow delicate and fearful. Whereas I… …did not react like this. My only problem was why it was hidden from me.
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