30 years with HIV

On December 1, World AIDS Day is celebrated. It was established to increase awareness of this disease. However, so far less than 40 % of young people in the world have a complete picture of HIV, which leads to the development of AIDS. The same number of HIV-positive people do not know about their status. Most human rights activists call the main reason the stigmatization of this disease. On the eve of the day of the fight against AIDS, the American coherent samizdat Ulyana Malashenko talked about fear, shame, love and hope with three people who survived the epidemic of this disease in the United States.

I really wanted to live to the age of majority

Nancy Duncan, 60 years old

I was born and raised in New York and still live here. I consider myself an extrovert: I like to spend time with friends and play poker. But sometimes I do not mind being alone. I love cinema, books and walks in the fresh air.

I found HIV in October 1990. I was hospitalized with pneumonia and a test was made in the hospital. Later, I realized that when five years before in the spring I had something like a seasonal flu after unprotected sexual intercourse, this was the moment when my HIV status changed from the negative to the positive. Then it was believed that this disease spreads exclusively in the male gay community, and women did not even demand that they regularly take tests for HIV.

In the early 1990s, my diagnosis was equated with a death sentence, and my first reaction was a fear mixed with a feeling of shame. I was confused, did not know what to do. I was lucky that at the time of receiving tests, my mother was with me. For many years, it remained my main support. She never condemned me, although I am sure that for her all this was a very difficult test. My friends also supported me. No one asked unnecessary questions, no one turned away from me.

I decided not to say anything to my son for the time being. Then he was only ten, and I was afraid that this news could greatly injure him. I just could not force myself to tell him that I, his mother, found this terrible virus in blood, which would soon kill me with a high degree of probability. But I constantly had health problems, and a few years later my son himself asked me what was the matter, and I realized that it was no longer silent. Upon learning of my diagnosis, the son cried. He asked me endless questions, and most of them myself did not know the answer. He was very afraid that I could die soon. Honestly, this conversation with my son is perhaps the most difficult thing I had to do in life.

I was only 33 years old when I found out that I had HIV. I did not have a romantic relationship, and I did not want to start them. It seemed to me that not a single partner could take my diagnosis, and I did not want to put myself as an additional risk of being outcast.

My self -esteem has fallen to the extremely low level. Despite all the support from relatives and friends, I continued to torment myself. I did this with a much more frenzy, what anyone could do from outside.

In the early 1990s, I worked as a postman. I clung to this work in order to continue normal existence, but a few years after I was diagnosed, I could no longer physically cope with my duties. Then I received disability.

My daytime activity was limited to the fact that I took the child to school and took him home when I was not sick. My son was my main motivation to continue to fight for life. I really wanted to live to his age.

I had no idea how to deal with all this. Not only me, but the whole world then did not know much about the human immunodeficiency virus. There was no Internet yet, and I went to the library to learn more about my condition. The existing drugs were toxic and had numerous side effects, and often did not help at all. I just decided to adhere to a healthy lifestyle. But every time I got sick, I almost physically felt how death was hanging over my head.

It was very difficult for me. I had a strong need to talk to someone else who was in a similar situation, but I did not know a single person with a diagnosis of HIV or AIDS. After some time, I found a support group for HIV-positive people. I learned that they all have the same fears as mine, but over time they learned to cope with all this. Our conversations have become a source of inspiration for me. I had friendly relations with the participants of this support group, and it was unbearable to see me to see how they died from complications caused by AIDS. All the time I thought about how terrible this death was, and wondered how soon it would happen to me.

Before new, much more effective drugs appeared, I had AIDS. In 1996, I also found lymphoma cancer. I thought I would definitely die. After six months of chemotherapy, I could hardly function on my own. My mother was already thinking about transferring me to hospice.

I was lucky: I was able to survive the few years that separated my GIV generation of more progressive medicines from the invention.

Despite the new methods of therapy, I could not return to full work. Nevertheless, since 1998, I have been making public lectures about what HIV and AIDS are. This causes a great response from the audience, people begin to share their stories, and I understand that I am engaged in the right things. I also work as a representative of the federal program for affordable family planning. We talk about illness and travel the streets with a van, in which you can take tests for free. We pay special attention to the situation in institutes and prisons.

I am very satisfied with the realization that now I am a part of the decision that will defeat the HIV epidemic. First of all, for this you need to educate people. It is necessary to tell them that only one unprotected intercourse can lead to infection. Many simply do not know that they are at risk, because in fact at risk is all.

It is also important to overcome the stigmatization of this disease. Medicine has already done a lot for this: if an HIV-positive person taking new drugs has negative tests for six months, this means that he cannot convey the virus.

I would like to say to those who have only recently been diagnosed that now this is no longer a sentence. Most of you will be able to return to work, start a romantic relationship and even have children. You can live a normal life if you clearly follow the recommendations of doctors, give up cigarettes and will not use drugs.

You can not get used to the diagnosis of HIV/AIDS, but it can be accepted. And I learned this. A little less than three decades after they made this diagnosis, from a psychological point of view, I feel much more comfortable. I no longer feel shame. I have a beloved man with whom we have been together for many years. He has no HIV. My son is now 37 years old, and I am grateful to God for the fact that I am still here. I tell my story in the hope that it will help someone too.

I never managed to get used to my diagnosis

Sheri Lews, 63 years old

I will identify myself as a heterosexual Jewish woman. I am a singer and publicist. With a positive HIV status, I have been living for the past thirty-two years.

When I was diagnosed, I felt absolutely healthy. I lived in New York and worked in show business, but I was already ready to get along, get married and make children. I came to take tests three months before the wedding. The results have become a real shock for me. The doctor said: “It is unlikely that during the time that you have left, an effective medicine will be invented. I'm really sorry".

Then, in the late 1980s, the HIV epidemic was in New York, and I knew that one friend of my friend died of AIDS, although her relatives preferred to call the official cause of death, fearing public censure. It was so much in those years that people tried their best to hide their diagnosis in order not to lose their jobs and not lose their usual circle of communication.

I did not want to scare my parents, who really did not know anything about HIV. I told them: “Yes, I have positive tests, but you don’t need to inflate all this. I'm fine". I did not particularly discuss my diagnosis with anyone else.

HIV infection turned my life over. She took my dream career and destroyed her relationship with her husband. After him, I met another HIV-positive man, but at that time medicine did not allow me to give birth to a healthy child, and adoption with such a diagnosis was impossible. As a result, I could not have the children I wanted so much. All this is a very traumatic experience.

No specialized consultants for HIV-positive people then existed. I could have been forgotten with alcohol and drugs, but instead I began to attend a support group for addicts. There I received an unconditional support that I needed so much. Thanks to these people, I remained alive.

It seems to me that over time my parents began to guess about what HIV is and what it threatens for me. We never discussed this topic in detail, but when my father was dying for several years later (he was only 65 years old), he said: “I beg you, just don’t get sick, please. But if this happens, an empty grave next to me in the cemetery, and I want you to know that it is for you. ” Mom, however, preferred to remain in the darkness of ignorance. She never met my doctors, never asked me about therapy. She, in general, still does not.

I never managed to get used to my diagnosis - I always just tried to be as busy as possible. Instead of constantly thinking about when I lose my vision, I will get cancer and when my dementia begins, I decided to help people like me.

HIV infection turned my life over. She took my dream career and destroyed her relationship with her husband

I moved to Boston and received a grant from Harvard University to study HIV/AIDS. Then I first began to perform at institutes with public lectures. You know, I was lucky. The audience in Boston is very educated and greedy before knowledge. Listeners actively absorbed new information without any signs of conviction.

I became a consultant for HIV-positive people. I remembered too well in what form my doctor told me about this diagnosis, and became the person who talks about positive test results differently. I want to believe that I do well that people look at me and think: “It seems that this lady is quite well preserved. Maybe I have a chance? ”

Now I am leading my podcast and I am writing to the magazines for HIV-positive people. Soon I have planned the production of a new autobiographical cabaret show in which I will sing. I'm really waiting for the premiere. I like that this production, on the one hand, satisfies my need for creativity, and on the other, it is a way to convey to the general public what I want to say: "There is no need to despair!"

Here, in America, we almost stopped using the word “AIDS”, because AIDS is a consequence of HIV, and modern therapy allows it to prevent it, and this is good news. On the other hand, I get the impression that most officials and ordinary Americans just stopped thinking about it. When in the late 1980s people like me for the first time publicly spoke about HIV/AIDS, it was news, and all this was discussed, and now the topic seemed to have disappeared from the agenda.

What is happening now in Russia is like what was happening in the United States before I was diagnosed. The state is at the stage of denying the problem, but this is not a solution. Unfortunately, as a result of this approach, many people think that they are not threatened with HIV. You know, at first it was customary to think that only drug addicts can become infected with this. Then they began to say that this is an exclusively disease of a male gay community. In fact, everything is wrong. HIV is not interested in whether you are Russian or American, rich or poor, you are heterosekudial or not. HIV is a disease before which everyone is equal.

Then I decided to stage my own death

Mark Olmsted, 59 years old

Photo: Michael van Essen

I realized that gay, quite early-at sixteen, and the next few years of university life drowned in the carefree fun of the Manhattan LGBT community. I was young and loving.

In the early 1980s, I made a camming out in front of my brother. It turned out that he was also gay. A few years later, each of us passed the HIV test, and both of us found a human immunodeficiency virus.

The disease hit my brother first, and I had to move to Los Angeles to take care of him. I was on all his affairs, including finances.

In 1991, my brother died. He still had incredible debts on credit cards for treatment, but I was able to pay everything.

I did not inform the banks about my brother's death. It’s hard for me to say why I did not do this. Probably just a panic. My brother faded in just three years, and it seemed to me that the same thing would happen to me.

My brother was a doctor. He had a high earnings and excellent credit history. I could still pay my bills myself, but I realized that this would not last long. Access to my brother’s credit cards was my insurance. I decided that in the worst situation, they would allow me not only to make ends meet and continue to pay for the apartment in which we used to live together, but also to travel and have fun.

When my brother’s driver’s license expired, I decided to update them. The civil servant did not even look at the old photo. I was automatically sent to the queue for photographing and handling fingerprints. When a new plastic card came to me by mail, I became the owner of a document on which was the name of my brother and my image. It sincerely seemed to me that there was nothing wrong with all this. The theft of personal data of the late brother seemed to me a crime in which there were no victims.

Meanwhile, the state of my health also began to deteriorate: I already had AIDS, and, as often happens in such cases, I got pneumonia. I could no longer work at a full rate. I had to get disability and ask my mother.

I was preparing for the worst, and before being on the deathbed, I wanted to have time to enjoy life a little more. I began to travel. I drove all over America and Canada, flew twice to Europe. I wanted to forget. I constantly hung in the bars and once tried methamphetamine.

I continued to earn extra money by Bartender from time to time, but with my lifestyle, this was clearly not enough to continue to regularly pay my own debts. Then I began to use my brother's credit cards. When I exhausted all the limits, I decided to use insurance payments - and received a check for 100 thousand dollars. At that time, two people with a diagnosed disease in the terminal stage could have one policy for two, and there was nothing illegal in this operation itself. It was as if I borrowed money from my deceased brother, and then I gave it to it. Moreover, I closed almost all of his credit cards. I still decided to leave one, just in case.

All this happened within the first 18 months after the death of his brother. During this time, six of our common friends died from AIDS. I was sure that I would become the seventh. Gradually, methamphetamine became the only thing that was able to distract me from thoughts of death. I began to use drugs daily.

Do not understand me wrong: I have never been an drug addict, incapable of functioning in society. When new medicines for HIV-infected people appeared, I stopped living one day and tried to return to a normal life. I began to work as an assistant editor of a large LGBT magazine and significantly reduced the use of methamphetamine. In professionally, it was the work of a dream, and I kept holding on to it. However, like any other work of the dream, mine did not bring significant income, and this was clear from the very beginning. So I took up new frauds with documents: I made a working contact in the name of my brother, but continued to receive disabilities in my name.

I also worked on one cinematic price. I really counted on this fee and sought to get into the world of cinema, but when I finished writing this script, the director of the film died of lung cancer. Then they appointed another director. But soon he died - from AIDS. My script was not interested in anyone else.

Then there was a sale of a LGBT journal in which I worked. The new owners transferred all the offices from Los Angeles to New York, and so I lost any work at all. I was absolutely crushed. When, in addition to all this, my boyfriend went to jail, I literally flew off the coils. Now I not only used methamphetamine, but also sold it.

As in any other small business, there are standard rules: work on increasing customer loyalty, offer to try product samples and guarantee its quality. I followed these rules, and my business developed rapidly.

Полиции я не боялся — опасался лишь того, что кто-нибудь из моих родственников или близких друзей узнает, чем я занимаюсь, и отвернётся от меня. Поэтому я работал на опережение: прервал контакты с семьёй и прекратил общение с близкими друзьями. Вокруг меня становилось всё меньше и меньше людей, а список моих клиентов продолжал увеличиваться.

Через год один из них сказал мне: «У тебя осталось не более 18 месяцев в этом бизнесе. Начались рейды, каждый день кого-нибудь накрывают».

23 августа 2003 года копы вышибли дверь моей квартиры.

Вы думаете, что это драматическая развязка?! Нет, это ещё только начало.

Я понимаю, насколько странно это может звучать, но лично мне тюрьма помогла

Под арестом я провёл два дня, в тюрьме у меня отобрали все мои препараты для носителей СПИДа, и на суде по мере пресечения я откровенно неважно выглядел. В то время мой диагноз всё ещё рассматривался в правовом поле как смертный приговор, и это помогло моему адвокату добиться самого мягкого наказания: 300 часов исправительных работу, 2200 долларов штрафа и три года условного срока.

Я был готов выйти из бизнеса, даже перераспределил клиентов между своими сотрудниками. Вот только сотрудники с новыми обязанностями не справились, и очень скоро все мои старые клиенты вернулись ко мне.

Тогда я решил инсценировать собственную смерть. Я отсканировал подлинный сертификат о смерти брата и с помощью фотошопа вставил туда своё имя. Я поменял место и дату смерти. Я изготовил подходящую печать.

Я был очень внимателен к мелочам. Я оставил домашний телефон на автоответчиках похоронных контор. Я даже оплатил собственный некролог.

Затем я отправил письмо полицейскому, курирующему мой условный срок. Представившись Люком, я сообщил ему, что только что приехал из Сиэтла с похорон Марка, чтобы закончить его дела. От имени своего брата я писал о том, каким ударом стал для меня приговор, и просил сохранить его в тайне от «нашей бедной матери». «Нужно ли мне встречаться с вами лично или вы сможете отправить мне все необходимые документы по почте?» — таким вопросом я завершил это письмо.

The trick worked. Полицейский отправил «Люку» письмо с соболезнованиями от лица штата Калифорния, и моё уголовное дело было закрыто.

Наверное, человеку, только что инсценировавшему свою смерть, стоит переехать в другое место или хотя бы на другую улицу. Но у меня была хорошая двухкомнатная квартира в Западном Голливуде, за которую в 2004 году я платил всего 625 долларов, и я не хотел ничего менять.

Бизнес тоже продолжал развиваться, и три месяца спустя я снова услышал громкий стук в дверь. На этот раз я поспешил открыть копам, прежде чем они её выломают.

Когда я встретился с полицейским, курировавшим мой условный срок, он был поражён. «За все годы своей работы я ничего подобного не видел! — воскликнул он, и, пожав мне руку, продолжил: — Я рад, что в итоге ты оказался жив. Ты чем-то нравишься мне. Правда, теперь тебя придётся отправить за решётку».

Мне дали шестнадцать месяцев, но ровно девять с половиной месяцев спустя я вышел по УДО.

Ничего хорошего в реальном сроке, конечно, нет. Но тюрьма была далеко не худшим, что случилось со мной в жизни. Я бы отсидел десять таких сроков, если бы это могло вернуть моего брата.

Мой статус ВИЧ-инфицированного гея парадоксальным образом давал мне особые права. Уровень гомофобии в тюрьмах тогда был очень высок, а по поводу ВИЧ и СПИДа тогда было много предрассудков. Всё это привело к тому, что первые два месяца со мной вообще никто не вступал в контакт: все просто боялись. Но потом общение стало налаживаться. Я относился ко всем с одинаковым уважением и со всеми был честен. Я даже завёл друзей. Я отказывался ввязываться в конфликты на расовой почве с другими заключёнными. Я открыто выступал против насилия. И то и другое при любых иных обстоятельствах было бы сигналом к тому, чтобы меня избили. Но вместо этого под конец срока я был едва ли не тюремной суперзвездой.

Я понимаю, насколько странно это может звучать, но лично мне тюрьма помогла. Она вернула мне связь с реальностью. Я получал необходимый медицинский уход. Я прекратил употреблять наркотики и снова стал общаться с матерью и сёстрами.

Тем не менее, после выхода из тюрьмы я понял, что это только начало возвращения к нормальной жизни. Несколько лет спустя я смог придумать название всему тому, что я ощущал. Я называю это дезориентацией выжившего. Когда слишком много лет ты готовишься к катастрофе, то отвыкаешь мыслить в категориях нормальной жизни. Мне пришло потратить на это ещё несколько лет. В конце концов я решил написать книгу о своей жизни, и совсем недавно она была опубликована. Если бы что-то в моей жизни было иначе, вряд ли я стал бы писателем.