Is that why it’s so hot in your flat?
No. Getting too hot doesn’t do us any good either, but we can’t turn down the heating. They were supposed to fit thermostats to the heaters in our block, but they say they can’t get them. My husband and I wanted to fit them ourselves, but they said we weren’t allowed to put our own ones in.
Then I’ll go into the bathroom and take off my long johns, or I’ll be too hot. It’s way below freezing outside.
And here in the flat it’s thirty degrees.We’ve been longing for them to finally get it done for a whole year now.
So that’s Miss Russia’s greatest wish?
Not my greatest. What I’d really like to do is to breast-feed my daughter at least once in my life. But I haven’t produced any milk for ages. I’ve dried out my breasts – using medicine. But at the start I had to express it and pour it down the sink. My husband did that, because I couldn’t bear to. It broke my heart, and I could see Eva was looking for my breast, grabbing it with her little hands and trying to catch it in her mouth, but I had to dodge and push away my own child to make sure she didn’t get a single drop. There’s a great deal of HIV in breast milk. I’ve been bottle-feeding Eva from birth, but I hold her as if she were breast-feeding. Sometimes I undress so she can touch me with her little hands. For me it’s very important, necessary and extremely pleasant. Sheer delight.You know what I mean?
I don’t, but I envy you like mad. Do you sleep together?
She has her own little bed, but in the morning we hold her between us.
And if her dummy falls out during a walk, can you just lick it and put it back in her mouth?
Better not to.
So it’s better not to eat from the same spoon either. Or share an ice cream. But will her father be able to gobble up his daughter’s chicken skins?
Not using her fork, just in case, because Ilya is a carrier too. But we have baths together. We have Eva’s blood tested frequently, and so far everything’s fine. She’s seven months old now. In another seven it’ll be 100 per cent certain whether or not she has inherited the virus from me. If during pregnancy the woman takes the right precautions according to the recommendations, the risk of infecting the child is about 2 per cent. Without that treatment it rises to 25 per cent, and if at the time of conception or during pregnancy there were drugs, alcohol or nicotine involved, or a generally debauched lifestyle, the risk increases to 50 per cent.
You’re very well clued-up on the figures.
It’s my job. I have a diploma in economics, but I’m employed as a social worker at our clinic for people with HIV here in Kazan. I run a women’s support group. In Tatarstan we have over 8000 registered carriers, three-quarters of whom are women, but a total of twenty come to the meetings, except that never more than six or seven girls meet up at a time. None of them has admitted to being HIV-positive within their own environment. They live in isolation, they have retreated into themselves, or into their families, and the ones who come to the meetings sit there huddled up, with their arms wrapped around their knees. Sex, rape and AIDS are taboo subjects – our women are incapable of talking about them, they are introverted, withdrawn, full of fear. That’s why we have separate groups for women and men. To attract them I have employed a professional choreographer. She teaches us to dance and helps us to open our hearts. That gives me a hell of a lot of work to do, and I’m always off on a trip somewhere to teach other people how to set up groups like ours, for men too. I also have a regular programme on the TNT television channel, called ‘HIV Emergency Service’.
Is that since 2005 when you were elected Miss HIV-Positive and became the face for the Russian campaign against AIDS?
Yes, that’s right.And in my spare time I give people haircuts at their homes.
What for?
To make them look nice. And I love it. A group of people gets together at someone’s house, I come along with my little case and I cut their hair. Often it’s a whole family, or friends of friends. I get a lot of joy out of seeing how much they like my work. It’s a very basic, uncomplicated emotion – instant remuneration for my efforts. And we talk a lot while I’m doing it. I reckon I don’t just cut their hair, but also give them psychological help when times are hard. I’ve been doing it all my life. First in my family village, and when I went away to college, I thrived on all the chat while cutting hair. One day I’ll open a hairdressing salon, I’ll set it up the right way so it earns money for me, while I spend my time organizing an emergency service for women and children, which will help them to recover their strength after major catastrophes. Rape, violence, emotional exploitation, and what I went through myself. I’ll be a coach. I’ve got the theory already, and right now I’m gaining the practical experience. The misfortune that happened to me has given me a lot of strength. I am very strong.
But the travelling . . .
Awful. I have lots of meetings with women in the zones . . .
Meaning the prison camps, the penal colonies. In Poland people don’t know that in Russia prisoners aren’t kept in cells, but in wire-fenced camps with huge barracks.
Women too. Thirty per cent of the HIV carriers in our country are former or current prisoners. In the camps almost everyone does drugs. Drugs are several times cheaper in there than on the outside. A single fix costs less than a glass of vodka or a pack of the cheapest cigarettes. It’s their only joy, their only pleasure, so they take it, although they all know they might catch the virus, and indeed they do. A huge barrack for a couple of hundred ‘zeks’ [as Russian prisoners are known], but they have one single needle. I’ve seen things like that with my own eyes.
How can the guards let something like that happen?
What are you talking about? They’re the ones who provide it! Everywhere. They deal in drugs. The administration and the governors know all about it. And they make loads of money out of that business. It’s worst of all in Siberia, where one in three prisoners is a carrier. And when he’s released, as a parting shot the medical service worker tells him he’s got tuberculosis, anaemia and HIV. And that poor, ignorant guy from the Siberian provinces is supposed to get himself cured? How the hell’s he going to do that? With honey and herbs?
In Russia there are 450,000 registered HIV carriers, but the authorities estimate that there must be at least twice as many.
In Moscow my husband and I talked to an expert from the federal centre for the fight against AIDS. He admitted that the authorities cover up the true scale of the epidemic.
Why?
Because if they published the real data, there’d be an outburst of panic. According to NGO figures, by 2005 there were already four million carriers. Most of them haven’t the faintest idea they are living with HIV.
So how did you find out?
As a competitive athlete I used to have routine tests. I was in training for ballroom dancing and light athletics. I used to run distances of five and ten kilometres.
Let’s mention by the way that you have the figure of a long-distance runner, rather than a model or a beauty queen.
I’m 1.67 metres tall and I weight 45 kilos. So I come along for my results, and the doctor tells me straight out I’m HIV-positive and I’ve got eight or nine years left to live at most.
That’s total rubbish.
Quite. He was badly educated, but in 2003 I was twenty-two and I didn’t know anything about this illness. I went home, collapsed into bed and didn’t get up for six months. I just lay there, howling, and pouring bottle after bottle of valerian drops down my throat. It was grim, nasty, awful, desperate. I wanted to die. My sister Nadyezhda often came by.
Nadyezhda – meaning hope. A good name in this case.
Yes. She sat with me and shared in my suffering. It was very important – otherwise she couldn’t have helped me, and here in the provinces there was no-one I could talk to about it. What upset me most was that I would never be a mother. Finally I pulled myself together, went to Moscow and saw that people like me can lead normal l
ives. They work, make love and have children. Now I know everyone has a very similar reaction to the news that they are infected. Here in Russia it looks as if each person goes through several major stages, just as you have to go through twelve major steps to treat alcoholism. First comes despair, breakdown and resignation. That is the victim stage.
In your case it lasted for six months . . .
Spent lying in bed.We keep wondering: why me and for what sins? Next comes the first steps stage.You get out of bed and look for information. I went all the way to Moscow. Then comes the final stage for most carriers, the acceptance stage. However, some reach a fourth stage – of increasing their potential, when a person realizes that thanks to the virus he has gained a lot. As I have. I have become stronger and I have come to know myself, I have acquired strength and might. That’s why I’m such a good coach and people believe me when I tell them how to fight against the stigma, the finger-pointing, rejection and discrimination. Because if a doctor refuses to give a carrier medicine, saying drug addicts aren’t entitled to any, we’re dealing with discrimination.
At lots of Russian firms infected people are sacked from their jobs. In my view that’s discrimination too.
Of course it is. At many private banks and insurance companies the employees have to give blood every six months to be tested for HIV, and those found to be carriers are thrown out on the spot.What’s more, that’s against the law. The mindset of the arseholes who do that is quite incredible. I spoke to one of these company presidents. Of course he’s opposed to discrimination, but he knows that in our country carriers are discriminated against, so he prefers to get rid of them, to be sure no-one will say his bank employs HIV carriers.
Pure schizophrenia.
I have experienced very strong stigmatization in my family village whenever I’ve been to see my parents. But I’ve done my best to understand that these are ordinary, simple, ignorant people, and on top of that they’re afraid. So I have to explain it all to them, wisely and with strength, tell them Sveta won’t infect them, and that I’m the same Sveta as five years ago, who still cuts hair, still helps out and laughs just as before.
So you’re a village lass.
Well, from a collective farm. My father is a tractor driver from the village of Shmirsh in the Chuvash Republic. They all know me there, because I used to go round the houses, to the militia station, the little hospital and the local administration cutting people’s hair.
Aren’t you a Russian?
I’m pure Chuvash. It’s a nation that lives west of the Kazan Tatars. I am exactly the same age as the worldwide AIDS epidemic. I was born in 1981, when the first cases of a strange illness were noted in California, and a number of homosexuals died.
That’s why the disease was called ‘the gay plague’.
And then Acquired Immune Deficiency Syndrome, or AIDS. After my birth, no-one gave me the ghost of a chance of surviving, because I was born three-and-a-half months early. My mother had collapsed.
She was drunk.
How do you know?
What’s the usual reason why people keel over in the street in Russia? Right. There’s terrible alcoholism here. I grew up in a world of alcoholics. And in a family of them. My dad drank appallingly. Then there’d be rows, he’d start beating my mum, and I’d get in between them . . . I was the oldest of five siblings. I couldn’t deal with the fact that all my male friends, the boys I used to meet, would be just the same – that they were all future alcoholics or drug addicts, because they’d had that sort of childhood too. I even went to see psychologists about it, and straight after school I got out of there. I started college, had my first great love affair, and then it turned out the boy was . . . Guess what?
A drunk.
Worse. A drug addict. Only later, thanks to HIV, did I start going out into the world, to Moscow, meeting open-minded people, therapists, former addicts and alcoholics who explained to me what addiction and co-dependency are. I realized that I was a co-dependent alcoholic, and HIV-positive too. I realized that all my relationships were a pathological, frenzied search for the love my drunken family hadn’t been able to give me. Because there’s no love there, the mothers never hug their children, they don’t kiss them or talk to them, they just scream at them and order them about. I realized that in men I had been looking for what I hadn’t got from my mother and father as a child. Finally it got through to me that I shouldn’t get involved with anyone until I had recovered and become an independent person, free from the searching, free from the sense of emptiness, or of something missing.
Maybe then you’d meet . . .
A good man. In my family both my grandfathers drank, so did my parents . . . There’s a sort of drinking tradition that’s typical on our collective farms, and in Russia in general. It’s a terrible epidemic, a plague of drinking. And after it comes crime and prison. I travel about the camps to visit the girls and I see they are all just like me. From the same sort of families, and they went out looking for love, got into drugs, contracted the virus, and if there are drugs around, sooner or later there’ll be prison. Then they fail to give love to their children because they’ve never experienced it. And it all starts over again.
Do your parents know you’re HIV-positive?
My dad never knew. He died in 2003.The worst year of my life. Just after he died I found out I was a carrier. Then my youngest little brother was born. He has infantile paralysis. He can’t walk, and as a result of it all my mother drinks even more. My other little brother, aged eight, is still with her too. I brought them to the city, because I fooled myself into thinking that Mum would stop drinking here. She doesn’t drink when I go and see them, but as soon as I leave she starts again. The boys have an awful time with her.
How do people live with AIDS?
On pills for the rest of their lives.
I know some people who refuse to take them.
Because they have to let their liver heal, for instance, which that medicine destroys. Lots of infected people have big liver problems because they used to drink or do drugs, or they have hepatitis B. Hepatitis devastates the liver. Three-quarters of Russian carriers were or are drug addicts, and that’s why the AIDS and hepatitis epidemics spread so very quickly and freely in this country, via shared use of needles and syringes. The research shows that 83 per cent of drug addicts have done it on a daily basis. Of course thousands of them live for several years, more than ten sometimes without knowing they are carriers, but without medicine the big bad illness is 100 per cent sure to hit them, all the more since anything that weakens the immunity brings that moment closer.
They can fall sick at any moment?
If you drink, do drugs, smoke supposedly innocent marijuana or even cigarettes, then yes. My Ilya smokes, but I only allow him one pack every three days. You have to feed yourself well, get enough sleep, not change your temperature abruptly, avoid stress and people who are sneezing or have runny noses. It’s very important. I never sunbathe and I have had to give up sport. I can do some just for fun, gently, but no marathons for sure. I’ve switched to yoga. And for the rest of my life I’ll never be parted from this wretched pill box.
Bloody hell! I thought it was one of Eva’s toys, or a Frisbee.
It opens, and inside there are thirty-one compartments for each day of the month. Each one is split into two halves, for morning and evening. I take three pills each morning and one in the evening, but not everyone gets the same.
How long can you live with the virus?
Apparently until your natural death. I know Kola Pinchenko from Saint Petersburg who has lived with it for twenty-seven years now. All my life. He contracted it in 1981 from an infected needle. He was a drug addict, but he gave it up, and he doesn’t drink or smoke. He is sixty.
What was the contest for the most beautiful immune deficiency virus carrier, Miss HIV-Positive like?
The contest was advertised by a magazine called Shaga [‘Step’] and a website for carriers. A few dozen girls sent in
their pictures anonymously, and the public voted. Thousands of people voted over the Internet. They chose three winners, but eventually it turned out I was the only one who was prepared to reveal my full identity, first name and surname. I was awarded the ‘Miss Positive’ title in Moscow on 1 December 2005, World AIDS Day. I thought it would be a quiet, small-scale event attended by no-one but carriers, but they made it as big a ceremony as the Oscars. Lights, cameras, a theatre full of people, and then a press conference. I was terrified. From morning to evening they kept showing me on the news on all the television channels. During a break in the event a man came up to me from the audience and said: ‘Such a little thing and so brave.’ That was Ilya, who is now my husband.
No more contests have ever been organized since, so you’re the only Miss HIV.
Yes. Twelve days later I defended my dissertation for my diploma in economics. I walk in, and I can see they all know me and are treating me like a star. That was nice, but it meant I had to go back to Moscow again. Ilya was working there at the time, he knows the city well, so he helped me with everything. I thought it wouldn’t be such a bad thing to have someone like him to help me on a regular basis. For life even, because I didn’t have the strength to be strong any more. I had had enough of being on my own. I fell in love with him in a single day. He was on his own too, because the girl he had been living with had dropped him when she found out he was a carrier. He was very upset.
Because she dropped him, or because he was infected?
Both, I should think.
And had he infected her?
No.
In two years together? That’s a miracle. The risk of infection during intercourse with a seropositive partner is much greater for a woman than for a man. I had it written down somewhere . . . Oh, here it is. For a woman it’s one in 600, for a man it’s one in 2000. Well, it’s a real miracle that she managed to avoid it.
White Fever Page 10
