Breaking the Silence
By Esti Ahronovitz
Dr. Gideon Hirsch, executive director of the Israel AIDS Task Force, will never forget the look on the face of the young man when he informed him that he had tested positive for HIV. Since the Task Force began to conduct quick tests to detect the virus, Hirsch has taken upon himself the thankless task of breaking the bad news. He waited a minute. He could see that the world of the young man who was sitting across from him in the office came crashing down. "Look at me," Hirsch suddenly lashed out. "Do I look sick?" The young man was too dumbfounded to reply. Hirsch, at 47 an impressive man who looks in the peak of health, stood up. "I have been a carrier for 18 years," he said, and embraced the young man - who burst into tears.
In 1989, Hirsch was one of the few Israeli students who was admitted to Stanford University in California to do a Ph.D. in psychology. But life in the American ivory tower took a steep plunge when he was informed by the campus physician that he was an AIDS carrier. Hirsch remembers vividly the feeling of isolation into which he was plunged at that moment, the abysses, the emptiness. He went to his room, sat down on the bed, frozen, and opened a bottle of vodka.
In that period, just a few years after the lethal virus was first isolated, the disease was synonymous with death. San Francisco’s gay press at the time was full or mourning notices.
"The discovery was paralyzing," Hirsch recalls. "I didn’t know what to do. I sat there on the futon, emotionally drained. I understood that I could expect a few years of healthy life, and then sickness, followed by death. That was the reality back then."
After a few years in San Francisco, during which he was active in organizations engaged in researching and fighting AIDS, Hirsch returned to Israel and immersed himself in medical studies. Today, as executive director of the Israel AIDS Task Force (IATF), he is waging a courageous battle against the stigma that accompanies carriers. As part of that struggle, he reveals himself for the first time as a carrier in an arresting documentary series by Yair Kedar, "Hashaylonim" ("The Questionnaires"), which is being broadcast on the documentary channel of YES satellite television. The series features interviews with people who respond to questions on the subjects of love, sex, death and money. On Tuesday of this week, the episode on death was broadcast, in which Hirsch, both of whose parents committed suicide in recent years, is one of the protagonists.
"In Israel, because of the stigma, very few people are capable of disclosing that they are carriers and telling about their lives, and I am one of the few," he says, explaining why he agreed to exposing himself. "I say today that AIDS does not equal death. I am the proof. I have been a carrier for 18 years. But for many people it is equivalent to social death."
Son and best friend
Hirsch lives in Jaffa, in an old house that has been renovated. His partner for the past year, Ron Ben David, moved in three months ago. On the walls are black-and-white photographs Hirsch took in San Francisco, photos of children from an exhibition he put together, and other pictures from the life of the community. On a low shelf is a picture of his mother, Hanna, who took her life in 1994 in the wake of depression. Eight years later, his father, Shaul, shot himself in the head. Hirsch is on intimate terms with death, engaged in a daily dialogue with the Grim Reaper.
In the kitchen he opens a drawer and fills his hand with pills, swallowing them all in one gulp with water. He takes a cocktail of three drugs that depresses the replication of the virus, plus vitamins. He is an advocate of vitamins and follows an ordinary way of life.
"People today no longer die from AIDS," he says. "The disease is found in people who do not get medical treatment. The word in medical conferences is that the lifespan of AIDS carriers is not that much different from that of regular people. The numbers talk about at least 35 years of life after being infected. Still, despite the optimistic numbers, AIDS is no picnic. I would prefer to live without it. I will live until I decide to die, in the event I find myself dying from cancer or some other disease. And if I have a child, I will also have a goal to grow old for."
Hirsch and a woman friend are currently in the midst of a process to bring a child into the world. AIDS carriers are now able to father a child by means of "sperm washing," referring to insemination with sperm that has been separated from seminal fluid. "I am very excited," he says. "I think this is the right thing. I want to be a father. Men who are carriers can now have children without fear. If the mother is a carrier, the child is liable to be infected during the birth."
Gideon Hirsch was born in February 1960; his mother always said it was the happiest day of her life. She was descended from the well-known Haskin family, which was one of the founders of Kfar Bilu, a farming community south of Rehovot, in 1932. His father, who was born in the Sudetenland, on the Czech-German border, immigrated on his own to Kibbutz Merhavia at the age of 16, after his family managed to escape the Nazi death machine. In the 1960s, his parents lived in Ramat Chen, in Ramat Gan, and were state employees. His mother, who studied law, was a police officer and became the first woman to receive the rank of police major general; his father worked in the State Comptroller’s Office. The atmosphere at home was one of Zionism and social democracy, a spirit of contributing to others, modesty and doing one’s duty, along with an affinity for Hebrew literature.
In 1973, the family - the parents, Hirsch and his younger brother, Arnon - moved to Jerusalem, where he attended the prestigious Hebrew University Secondary School. "The basis for my education lies there. It was a school that recognized the importance of a general education, and that was the mold into which the other sources of my knowledge were poured."
Hirsch says he had a happy childhood, but looking back with the perspective of years, and after lengthy psychological treatment, he understands now the anger that had accumulated inside him in regard to his mother. In February 1994, at the age of 61, she wrapped her head in a plastic bag and swallowed a large dose of tranquilizers. A few days before committing suicide, she spoke with her first-born son, who was then in San Francisco. They had said he would postpone his visit to Israel until Passover, but she said she could not wait. "I was angry at her for not waiting," her son says. "Today I understand that if people want to commit suicide, the only thing that interests them is dying."
In the documentary series, you say that by the act of suicide she behaved generously to you and your father. That is a hard statement.
Hirsch: "We had a difficult relationship. She was a hard woman. My mother always told us about the best cow in the shed, the one that gave the best milk with the highest fat content, but when the pail was full she defecated into it. That was my mother. She gave her all, and in the end did something that left a bad taste in the mouth. During my childhood we were very close. When she was in periods of depression, and didn’t want to see anyone, I was the only one able to talk to her. In those years she burdened me with things that were out of place, but I only understood that in retrospect."
Such as what?
"She turned her first-born son into her best friend, and that was not right. She talked to me about things one doesn’t talk about with a child, such as her doubts about staying with my father. A year before her death she came to visit me in San Francisco. I didn’t want the visit. She absolutely forced me to receive her. She was right: It was an important visit. It started badly, but we drew closer, and that is what I remember from the last time with her. At the end of the visit, I told her, ’I was wrong. Forgive me. I am happy you came.’"
The crisis
The crisis in Hirsch’s relationship with his mother occurred when he discovered that he was gay. "I am not one of those who know from childhood that they are homosexual. In the 1970s there was no Internet and there were no gays on television. I didn’t know what it was called, but I knew it existed. In the spring of 1976, a local newspaper published an article about Independence Park in Jerusalem, where men meet men. After reading the article, I went there. I was drawn there like a moth to the light. I remember it as though it were today. It was in the morning, and someone picked me up. I was a beautiful boy of 16. He took me to the student dorms and asked me to choose a record. I chose the soundtrack of Fellini’s ’Amarcord.’ What happened there was not fun. It was a harsh experience, traumatic - my first experience of sex with a male. I remember going home and staying under the shower for about an hour, because I felt unclean. I had dirtied myself. In 1976, gays were not accepted."
Despite the feeling of being sullied, "I decided that I wanted to do it again. I remember that I would set myself a few times within a given period to go to the park. Later, I met someone who was in school with me, and I fell in love. My first great love was for an Israeli guy of Dutch extraction, and because of him I came out of the closet. He went back to Holland and I was torn apart by longing, and my mother saw it. She saw that I was always waiting for letters. She understood. I remember when she asked me and I told her. I remember that we cried in each other’s arms."
As in every good family of yekkes (Jews of German descent), his parents sent him to a psychologist. "After a while I understood that there was nothing wrong with me, and that was the start of a process of self-acceptance. There was no active hiding in the closet. The family knew. It was important to keep it secret from Grandma. My father took it in stride, and that was one of the causes of the tension between him and my mother. My mother always claimed that he took it with equanimity. During the army I had a boyfriend, my first partner, and for my mother the fact that I had a boyfriend meant that my homosexuality was not just a passing episode. She told me she didn’t want him in the house. I told her that if that was the case, then I wouldn’t come home, either. And I didn’t."
’Still an outsider’
Hirsch made it into the pilots’ course in the army but left and served in an antiaircraft unit. After his service he studied philosophy at Tel Aviv University and then went on to psychology. After graduating summa cum laude he was accepted by Stanford, where he applied in the wake of a relationship he had with an American man. "About a year after we stopped being a couple," Hirsch explains, "he called and asked to meet, and he told me he was infected with HIV. At that time in the United States, people were dying of AIDS, a lot of people. It was frightening." Hirsch did a test and was diagnosed as a carrier. "I chose to stay in touch with him and never accused him. Both of us were responsible."
A day or two after getting the results of the test, Hirsch told his brother. "It’s strange, because we weren’t close. I just had to tell someone. He took it harder than I did. He couldn’t bear the burden and told my father. The two of them decided not to tell my mother, and I went along with that. But she felt it. In one of our phone calls, about a month later, she asked me: ’Doni, is something wrong? Did you get infected with AIDS?’ I told her. ’Oy,’ she said. ’I knew it, I knew it.’ Those were her very words: ’I knew it.’ After that conversation our relationship was not very good. When I visited Israel it always ended in tears. Hers."
After the results and the state of shock, he decided to leave the university but to stay in northern California. He explains: "I understood that I had a few years left to live and that I was not going to waste them in an academic country club, so I moved to San Francisco."
Why didn’t you come back to Israel?
"The discovery of AIDS in the reality of San Francisco made it easier to cope, because there were already a great many like me there. Awareness of AIDS in Israel was very minimal then. In San Francisco, many people had AIDS and the support they received was incredible. There was even one organization that had volunteers to help AIDS patients with their pets - they brought food and took the dogs out. It was amazing. The whole community pitched in, and I became part of that reality and felt that I was doing something, too."
Hirsch rented an apartment, started to study photography, and became a volunteer in two leading organizations, Act Up and Project Inform. "There were no medicines then, apart from AZT. In Act Up we started to research the effectiveness of the drug. I refused to take it, and that saved my life. In Project Inform I underwent training and did volunteer work on a hotline."
As time passed, he discovered two things. "First, despite my involvement in American society, I was still an outsider; and second, the deeper I went in terms of information about the disease, the more knowledge I lacked. During the visit to Israel when I saw my mother for the last time, I enrolled in medical school at Tel Aviv University."
A logical decision
Hirsch, the first medical student in Israel who was an AIDS carrier, did not tell the faculty about this in his first year. It was only when the practical studies began, and he started making the rounds of hospital departments, that he imparted his secret. The university responded by setting up a committee to deal with the connection between Hirsch and the directors of the departments. Concurrently, for the first time, a Health Ministry committee was established to set policy with regard to students who were carriers. "The committees decided, as is the case everywhere, that the only restriction on physicians and students who carried diseases transmitted in the blood - and not only AIDS - was that they would not take part in surgical procedures. That seemed logical and I accepted it."
Did you not have a dilemma about whether to tell your patients?
"My only risk as a physician is mine, because when you are in a hospital and have HIV you are liable to contract many infections. If there is a risk of being injected with a needle, the risk is that I will be injected with someone else’s needle. The risk that I will be pricked with a needle and afterward the same needle will be used on someone else is negligible."
Hirsch told his clinical group about the virus, but more students and staff quickly found out, too. "I discovered that it’s the same for AIDS as for homosexuality: The attitude people have toward you depends on your attitude toward yourself. I don’t know what people said behind my back, but to my face I received a great deal of respect. I also came with knowledge and baggage, because I was the first person - with six years of AIDS - who was studying medicine. It was like holding the bull by the horns."
Weren’t you nervous about the reactions?
"My goal in studying was to accumulate knowledge. I thought it was my obligation to do everything I could to help people around me live, and also preserve my life. I never thought for a minute that I would make a career out of it or that I would live to 40. In those days I didn’t do any long-term planning. AIDS was still a disease you died from."
What is your opinion of the senior heart surgeon in Ichilov Hospital who was found recently to be a carrier and is going to start performing surgery again?
"On the one hand, as the director of the IATF, I don’t think discrimination is right, and today we know that the chances of infecting others in medical treatments are very low. On the other hand, I have a problem with the case and with the judgment of that surgeon, who did not bother checking himself over a long period of time, as to whether the disease came from a needle or via some other way. As a physician, he should have demonstrated responsibility and been checked immediately."
Obsolete stigma
After completing his medical studies three years ago, Hirsch began to specialize in psychiatry. But then he did another turnabout and decided to drop the psychiatric studies and to devote himself to the IATF, which was on the verge of shutting down, with a deficit of more than NIS 300,000: "I left psychiatry because I knew this was my mission. This was why I had studied medicine, and here was the opportunity to engage in the macro of medicine, not the micro."
He found a shattered, nonfunctioning organization, and threw himself into the job. He channeled all the knowledge he had accumulated over the years, both as a physician and as an activist, into his new goal. His office, which today consists of 12 activists, has become a place of "pilgrimage": Every question, whether medical or personal, gets a reply, and his ongoing participation in conferences on the subject helps him update his colleagues through studies he sums up and makes available.
Initially, he worked without a salary. With the help of PR man Rani Rahav, who for years held fundraising events for IATF in his home, the group was able to organize a major event sponsored by Bank Hapoalim. The million shekels that were raised that evening helped the organization revive itself. "The IATF would have collapsed without Rani Rahav. It’s important for me to praise him. In the United States there is a gallery of people, from Elizabeth Taylor to Elton John, who and raise funds. That doesn’t exist here. Here we have Rani Rahav."
A Friends of IATF organization is currently being set up, in which one of the leading activists is the dancer Ido Tadmor.
In his first year as executive director, Hirsch organized a Web site (www.aidsisrael.org.il; Hebrew only) and launched information campaigns. "The State of Israel is not taking responsibility for prevention. The state has not given funding toward the cause; nothing was done here. Whereas in the West governments invest more than a dollar per person on information efforts, here the investment is less than 10 cents." Hirsch organized eight campaigns and hammered home the slogan, "If you weren’t infected, maybe you infected someone?" The idea was to heighten awareness of personal responsibility and the need to be examined.
One of the humanitarian efforts of the IATF is to distribute medicines to foreign workers - "in roundabout ways," Hirsch says. "In the past two years, the number of foreign workers who receive lifesaving drugs from the IATF has doubled. The state does not look after them. I can tell you about a 38-year-old woman who came to us because she had AIDS. Two years ago she gave birth to a son. Under the law, the children receive treatment from the state, but she came here and looked ill - her legs were trembling and she was frighteningly thin. When she came into my office I saw in my mind’s eye how we were going to raise an orphan. Israel gives life to the son, but abandons his mother to die. We at IATF give her drugs and save her life."
Another important initiative of the IATF was to bring in kits to run quick tests for AIDS. The IATF provides an answer within half an hour, rather than days or even weeks elsewhere. The tests are done anonymously, with professional advisors, and those who need psychological support get that, too. Hirsch is conducting a constant battle to get innovative medicines brought into the country. "I just wrote to the head of the pharmaceutics department about a medicine that was authorized by the U.S. Food and Drug Administration a year ago, but for some reason had not yet been confirmed for use here."
Hirsch’s primary goal: to effect social change. "The stigma in Israel is lagging behind the medical treatment by more than 10 years. People in Israel are afraid of AIDS, even though in medical practice AIDS no longer equals death. Today, the main focus of the IATF is on the battle against the stigma, which is greasing the wheels of the epidemic. People don’t get checked because of the stigma. It’s surprising how little talk there is about this: AIDS has not yet become part of the public discourse, not in the society at large and not among gays."
Hirsch says he was surprised to discover that only 10 percent of the schools he approached agreed to make use of the educational workshop he developed especially for youth on avoiding AIDS and sexual diseases. The IATF is about to make a new effort to market the workshop for the next school year.
Next month the organization plans to hold a conference calling for an end to the silence within the local Ethiopian community about the disease. "About 50 percent of the carriers in Israel are in the Ethiopian population, but it is difficult for us to reach that group. It has to do with the stigma. The entire community is fighting the external stigma, but there is also a harsh internal stigma. The community ostracizes those who are marked as being ill with the disease."
The gross ignorance exists in all strata of society, he explains: "An employee in a large corporation who was fired because he is a carrier came to see me. We are helping him. Someone like that doesn’t know whether he should go public and wage a struggle. I can tell you about an Ethiopian man of 34, with a family, who was told that the condition for him to continue in a professional course was to tell all the students and teachers that he is a carrier. He was shattered, he wouldn’t do it. He came to us and we filed a suit on his behalf. Not only did he get financial compensation, he was also accepted to the course. There are some carriers who don’t even tell their parents. I know one carrier who did not go for treatment or follow-up checks because he was afraid someone might see him enter an AIDS clinic. He was ready to take the risk of being sick in order to protect his anonymity."
Not long ago, a physician who is HIV positive shared with Hirsch his qualms about whether he should specialize in pediatrics. The response? "I advised him not to. In private practice, if parents find out he is a carrier, they simply will not go to him."
The death option
In January 2002, a year before Hirsch completed his studies, his father committed suicide. He, too, did not wait for his son. In the documentary, Hirsch tells how upset he was that his father, who was 73 at the time of his death, did not wait until he graduated.
"My father refused to be a sick man," he relates, "but old age started to leave its mark. He had a quiet heart attack and he became a cardiac patient. He couldn’t bear it. He turned pale as soon as he entered a hospital. He couldn’t stand the sight of blood. He said that he would kill himself if he became sick, only he was a lot less sick than he thought, and I feel a bit to blame. Somewhere along the line, I was very hard on him. He didn’t take his medicines, and I would say: ’Not to take medicine is like committing suicide.’ I used those words, talking to him. At the end of January five years ago, he got up on a Sunday morning and shot himself in the head."
Are you capable of accepting someone’s wish to put an end to his life?
"We sanctify free choice in everything. People can choose to ride a motorcycle and endanger themselves, people can choose to drink alcohol, but when it comes to choosing death we find this unjustified. I think the principle of the sanctity of life - and I say this also as a physician - is exaggerated. I don’t want to say that life has no sanctity at all, but someone who has gone through most of his life, done what he did and reached a stage where he can no longer expect happiness and pleasure - based on insight relating to a serious, chronic illness or a serious loss at an advanced age - has the right to put an end to his life. I think that people who want to end their life should be helped to do so."
How does that sit with the Hippocratic oath?
"In the period of Hippocrates, people lived until 30-40, on average. There is a problem in prolonging lives, as it is done in our day. There are people who terminate their lives after being hospitalized humiliatingly in some internal ward, where they lose their remaining dignity. Would they want to be kept alive in this way? A person has to be allowed to decide. Our problem as physicians is that we are not allowed to assist people to terminate their suffering."
How will you die?
"I would be happy to leave the world in a room filled with friends, to part from them with an embrace, take some medicine or drug, and go. I am not afraid of death; I do not see death as such a big deal. The question is how much we reject death and what quality of life we have until death. Yes, I want to choose the day of my death."
Haaretz.com