Long-term survivors are people who contracted the virus during first years of the epidemic but made it to the introduction of treatment and have survived to the present day. In the West, they are a rightful part of the public context built around the HIV/AIDS problem.
Their personal stories are an integral part of national memory. Quite a respectable part, apparently. In contrast, such stories are consigned to oblivion in Russia, where the beginning of the epidemic overlapped the heroin wave of the 1990s. They remain a kind of "apocrypha" available only to a small circle of their central characters and very few witnesses of those dramatic events.
The subject of this interview is one of them. The last generation of Soviet schoolchildren was thrown by a hurricane of sudden changes into the open sea of the market economy. Having learnt its basics, they would often find themselves defenceless in the face of the new beautiful world in which they had to survive, just like millions of their fellow citizens.
Residential districts of the country's largest metropolis were rapidly turning into "gangster neighbourhoods" – the first raves, easy money, heroin use and uncontrolled freedom that no one had ever experienced. Not everyone survived.
AIDS.CENTER publishes the second part of a big interview about the first Russian HIV-generation. An interview about drugs, the deadly virus, and the rocky road back.
— ...You don't get cravings for opiates immediately. Not after the first dose. It takes time. And it all depends on what drug the person takes. However, it doesn't take much time.
— How long does it take to get addicted to heroin?
— For a mild withdrawal, a month of daily use is enough. Well, even three weeks is enough for withdrawal symptoms to show.
— So it happens to you for the first time, and then…
— And then everything keeps repeating. One dosage, then another, and another ... You asked me about my first experience with intravenous intake. My situation was quite common. For some time over several years, I was only snorting. The next stage is shooting up. It's a hell pit. There were drug addicts in my circle who took heroin intravenously. In fact, I actually bought drugs from them.
However, looking at them made me realise that if I kept doing it, I would become like them. They would wear torn plastic trainers in winter. You can now buy similar trainers labelled "Rock-Bottom Prices" in shops, where you will find New Balance shoes for 1500 roubles. So those guys were wearing such trainers with their soles partially ripped off and hanging loose. Their shabby jackets had burnt holes in them.
By the time I had my first craving, I had already been using intravenous drugs. It's a wake-up call, you know, when your inner voice says "You're in big trouble, buddy, you're screwed". But instead of trying to get out of this trouble, I let myself go, thus only aggravating things. There are always two ways after all: the right one and the simple one.
— What's the right one?
— The right one is to stop and to start changing your life in some way. The simple one is to keep doing it. Of course, being a coward, I chose the simple way out.
However, I tried to do something about that. First – the clinics, where I stayed for detox treatment and which cost 250 dollars per day. I had a private room where there was a button to call for a nurse, a game console right in my ward, and an ashtray on my bedside table. Premium-class service.
Later, I had to undergo rehabilitation in state-funded facilities, because I had run out of money. They usually simply took me to the nuthouse to wait out the withdrawal syndrome.
— Can you tell us what happened next?
— I lost my job. When you do drugs, sooner or later, you lose it anyway. At a certain point, you begin spending every penny you earn on drugs. You also start to feel critically short of money all the time.
Until a certain moment, everything was going along the right track. Well, at least it seemed so. I had a fulfilling life that was all about nightclubs, wavey garms, and fun. At first, I even kept going to work. However, at some point, my boss just suspended me and put me out of business. I would oversleep and be late for work, steal cash from the register and some merchandise.
After they deprived me of money and the ability to earn it, I found myself on the street again. Although this time, I didn't have a penny in my pocket and had a bad craving. So I started pilfering.
— What do you mean?
— Well, you need to somehow raise money to buy drugs.
— So what did you do exactly?
— The easiest way is to steal from home. Sooner or later, any drug addict starts to rob their own family because of the addiction. They start pilfering, as they don't have any spirit left for doing something else.
I started by stealing my mother's gold jewellery. Then I started hooking out appliances and everything that I could sell. At some point, my mother would give stuff to our neighbours for safekeeping, as there was absolutely nothing left at our place.
I would get up at night, sneak into her room while she was asleep, slip my hand into her bag, pull her last money out of it, and immediately get away for a new dose. It's no joke.
Drugs are actually a monstrous thing. With them, you lose everything inherent in a human being. You turn into an anguished and cornered beast who is making himself and everyone around him suffer.
— What about friends?
— At some stage, they also turn their back on you. It got to the point where they were now afraid to invite me to their places and didn't allow me in their houses. If I dropped in on someone, we would talk on the sidewalk.
At first, my friends believed me. They helped me and tried to rescue me. I would repeatedly swear that it was the last time, and that I was going to quit the next day. I just wanted to get money from them. A drug addict equals a liar. If you cheat a person once, twice, then three, four and five times, the sixth time, he will just tell you: "Sorry, pal, I'm not doing it."
That's what drug addiction is about. You're always on the outside. Outside the law, outside society, outside friendship and outside love. You're nowhere. Just out of the picture. A persona non grata. That's because they're afraid of you. You're a threat. And that's true. You do pose a threat.
Besides, I lived in a rough neighbourhood. And unwritten rule says that a person using intravenous drugs is no person at all. It's a strict taboo. So just go and say thanks for not being beaten up. It's just the way it works.
— How did you come to know that you were HIV-positive?
— I was undergoing another detox. I can barely call it a rehabilitation. It was a regular madhouse, where those on parole who had committed mostly sexual crimes, as well as alcoholics and drug addicts, stayed. A good example of Russian free healthcare.
By the way, it wasn't my first time there. I had no money, no drugs, and I was freaking out from withdrawal. My mother would just come and drop me there. All I could do was bite the iron backrest of my bed, as the hospital didn't give us any medicines to ease the withdrawal. The only option was to suffer through it. Nowhere to run. What else could I do?
It was all about suffering, enduring, and wheedling Clozapine out of nurses to be able to fall asleep at least for a day and not feel that horrible twisting pain that seemed to make your body fracture. I can't even remember how old I was at the time. Twenty-five, I think.
All addicts were tested for HIV. So they also took my blood sample. Some time after I came back home, I got a notice from the regional drug dispensary. It was nothing specific. But I immediately realised what it was all about. I mean, nothing else even crossed my mind.
So I went there. I vividly remember that it was summer. I finally got there. The dispensary was housed in a dilapidated mansion on the city's outskirts. A Soviet-like building, somewhat reminding you of the 1930s films starring Lyubov Orlova. Ragged walls with cracked plaster. You enter the building, and it makes you wanna die already. Even if you don't have HIV.
The very atmosphere and interior of the place seem to be telling you that you've enetered the house of grief and despair.
Then there was a woman in a white coat who said in a dry voice, "You are HIV-positive." I ask her, "What, how come?" But all she replied was: "That's what it is. Just go."
— What did she mean? "Go" where?
— Wherever you want. I remember asking her how much time I had left. She replied, "Two years." That's what she said, looking right into my eyes.
— But you were only 25.
— Exactly. Well, it later turned out that she had been wrong. But in the 1990s, there was no information. We knew nothing at all. A video was broadcast on TV saying, "AIDS is the plague of the 20th century." It showed the Grim Reaper in the fog, rolling balls just like in bowling. But instead of pins, there were people. That nurse just didn't know what to say, and so she said the first thing that she could think of.
You're outside the law, outside society, outside friendship and outside love. You're nowhere. You're just out of the picture.
I remember also asking, "So what's next?" She replied, "Take care of yourself like a delicate vase." And she closed the door. Like, you're welcome for the cheer-up.
When you're a 25-year-old drug addict and you hear that you have only two more years to live... I came out of the building, sat down on the kerb next to the dispensary, lit a cigarette and started to think. It's quite an interesting feeling when you "have two more years to live", because you begin to understand you have a set deadline. You start thinking about how to spend this time.
The first idea was that it was time for me to quit and change my life. But the second thought was, "Why the hell do I need all this?" If you only have two years left, you should go off the rails. You're like a berserker.
— You mean, if you're going to die anyway, you become immortal in some sense, right? There's nothing to be afraid of.
– Yes. You can do anything you want.
— So what did you do?
— I plunged into heavy use. I was trying to pack my mind to the gills, didn't matter whether it was with drugs, alcohol, or something else. I needed to be in a total haze, so that my mind wouldn't even let me think about my HIV.
That's how I waited for my death for three years. Then I started to have thoughts about suicide. They wouldn't leave me. I would wake up in the morning or some other time, look at the chandelier and think, "I need to hang myself. I just need to do it."
Meanwhile, I was never educated about living with HIV during those years. I found myself in total isolation. I believed some crazy things. For example, I thought HIV could be transmitted through a handshake. I was also afraid of drinking from the same bottle with somebody. And this was a common thing for an HIV-positive person in the 1990s who expected to die any day and therefore didn't want to do anything with their life.
— So how did you get off the hook?
— I just got sick of waiting to die.
— What do you mean?
— You just get tired of waiting for death to come for you. I got past the two years' deadline that my doctor had given me. And I just got fed up with it. So I tried to live a somewhat sober life. During periods of sobriety and clear thinking, I would make attempts to do something, to get a job and to start working, but then, I would relapse again. So basically, it was all quite a bumpy road.
Even before I learned about my status, I completed a 12-step recovery programme with Narcotics Anonymous. It was my very first time to come across drug addicts who didn't use drugs. In fact, oddly enough, it was the beginning of my "recovery". I got registered with an AIDS centre. However, it was only many years later that I received therapy.
— Tell us about the programme.
The 12-step programme is a very useful tool that allows you to live without paying a penny. The basic principle is that everything is simple and difficult at the same time. The first step is to admit one's own powerlessness.
That's a fundamental point. It is considered the most important stage. And it's the most difficult. Every drug addict or alcoholic knows how to stop drinking or using drugs, but they don't know how to resist starting again. I can enroll in a detox program, go to the hospital, to prison, or to the madhouse. But when I get out of there, the question arises: How do I prevent a relapse? And that is a mystery, a puzzle. The programme gives knowledge about how to prevent relapses.
— What do you need to do?
— You need to change your lifestyle dramatically. That is, from your social circle to your world views. It is comprehensive work.
— You have to cut ties with all the drug addicts you know, don't you?
— Yes, to change your environment. Every drug addict or alcoholic has their social circle. People in this circle are just like him or her. They're drug addicts or alcoholics. These people keep pulling you down. The only way out is to sever all contact with them. Completely. It is difficult, but if you want to live, you will do that.
And it doesn't mean just dropping off the radar. Very often, you have to say it to the person's face: "Buddy, piss off. And don't come again."
— That's the same things you were told at some point, right?
– Yes. It's tough. But when it comes to drug or alcohol addiction, the buffet system doesn't work, that is, you don't have much of a choice. There are some things that drag you to death, and you just need to cut them off. End of story.
— And what about your world views?
— The main difficulty with drug or alcohol addiction is that it is not so much a physical illness as a mental one. Therefore, simply dealing with the physical aspects is not enough. If you have a craving, they can put you on a drip, give you some medication, and you'll get over it. You will take several vitamins, and will be fit as a fiddle in three days. But your mindset won't change over these three days. It'll remain the same.
Changing your mindset means giving up the patterns and way of thinking that you're used to. First, you have to stop wallowing in self-pity. Self-pity is like a horse that keeps dragging you down.
— "I'm so poor and unhappy. I'm the most unfortunate person in the whole history of humanity".
— What else? "Learning to enjoy things without drugs"? But what if I'm doing drugs because I feel lousy without them, and not for pleasure?
– This is a beautiful manipulation of a drug addict. If you offer me something interesting, I might consider following you. What you've just described defines a drug addict's mindset. That's the hardest thing to deal with.
Starting from some point, I shot up with young guys, about 15 years younger than me, because all my peers had died. Yet, even from among those young ones, only two or three are still alive, I guess.
It is absolutely deceptive. There is not a single grain of truth in that. Well, the only truth is that drug addicts do really suffer. They feel terrible.
The only option is sobriety, which can be fifty times harder than living with drugs. But this life has its own pleasures. I can't say that my life is easy. Now that it's drug-free. Quite often, it's all about survival. It might happen, for example, that they turn my job offer to work as a cashier in a regular supermarket down. Still, I remain sober, because each day is precious to me just the way it is.
So what is good about sobriety? It's basically the fact that I don't expect or need much from life now. If people who have pulled through such terrifying diseases with God's help are smart enough and have learnt how to think positively, they need little effort to backtrack to comfort, happiness, and enjoying life.
— So you've been saved by Narcotics Anonymous.
No. Nobody has to save anyone. It's sink or swim. You can't save someone who doesn't want to be saved. If a person says they don't need help, there's nothing you can do about it.
If there is no motivation, you can do nothing, nothing at all. You can't put a good head on someone else's shoulders. Any action is useless here. It's both hard and impossible.
— By the way, how is a group therapy session conducted? "Hi, my name is Dima". What's next? What do you talk about?
— Anything. Therapy is first aimed at ensuring that you won't snap and go back to alcohol or drug abuse. A newcomer is the most valuable participant in the group. When someone comes to the meeting for the first time, the whole group's focus is on them. The group explains to them how to handle cravings, what other steps there are, and many other things.
But most of the talks are not much different from those one may have with friends. Work, household routine, social life. Plans, fears, ups and downs, daily life.
— How many drug addicts did you know during the 1990s? How many drug addicts did you know at all?
— A hundred people, maybe even more. Around one hundred fifty, probably.
— And how many of them are still alive?
— All my peers are dead.
— You mean, there is no one at all?
— Not a single one. Starting from some point, I shot up with young guys, about 15 years younger than me, because all my peers had died. Yet, even from among those young ones, only two or three are still alive, I guess.
— How old are they now?
— I am 44, so they should be about 30.
— Have these three of whom you speak quit drugs? What are they doing now?
— They are still alive only because they also got help from Narcotics Anonymous at some point. As far as I know, all of them have been sober for several years now. What are they doing now? Family, kids, work... Taxes, God damn them... Just life. That's the story.
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