LIVING WITH AIDS IN GERMANY (Satis Shroff, Freiburg)
“It’s the 1st of November (Allerheiligen) and I ask myself: why do you give the dying company? In all those years I haven’t visited a single grave. I can’t let go of my clients before they die. I just can’t bear to do it after a certain amount of deaths through Aids.” This was what the guy at the local aids assistant center in Freiburg said to yours truly when I paid him a call.
How does a person afflicted with Aids feel and what does he think about himself, his family, the society and what sort of help does he get in Germany? These were the questions that I posed to HIV-positive people living in a kind of commune run by the local Aids-Hilfe in Freiburg (Southern Germany). The Aids-Hilfe is a pan-German institute which helps HIV-infected people.
The clients were in the age group 26 to 46 and some of them were drug-addicts in the past, some were chronic alcoholics, and most of them were from the middle and under-class Germany society with bi-, homo- and heterosexuals tendencies.
Even though it´s possible to protect oneself from contracting the HIV- infection, Aids still marches on. We know that it´s a disease with an unusual latent period and that the full clinical Aids leads to death. And yet we point our finger towards the minorities of the society: homosexual and bisexual men, fixers and prostitutes. In the media there´s a tendency to individualise the risks of HIV-infection, and such a stance doesn´t promote a collective coping behaviour. The infected and the aids-afflicted are still stigmatised and discriminated.
A closer look reveals that every one of us could contract HIV-infection and it has psycho-social connotations. Only a massive campaign in which parents, teachers, lecturers, medical doctors, social workers and trade-unions work together can achieve some degree of success. This campaign should be launched at school and college levels, in the tourism industry and other industrial and administrative sectors, in order to eliminate the half-knowledge and angst, and to motivate self- responsibility, and to avoid the risk of getting infected.
Take Stefan W. 46 for instance, a blond male nurse. Stefan had undergone the Aids-test in 1985 and found out that he was HIV positive. He said, “I was scared then, because I´d read an article about Aids in “Der Spiegel“. After that I decided to do an Aids-test, because I couldn´t bear this fear and indecision. And when I came to know the positive result, I felt miserable and alone in this world.”
I asked him whether his family had supported him.
I had problems with my parents who didn´t show any sympathy towards my homosexuality. I even lost two brothers, because they couldn’t live with my Aids-problem. I was really stigmatised.
How did you come to the Aids-Hilfe and what did you expect?
For a while I had to take care of myself. It was in 1988 that I contacted the Aids-Hilfe. My aim was to get to know other HIV-infected people and to see what they offered in terms of aid. I met a nice female social- worker, who helped me a lot by telling me about dying and death. We talked about what I was to expect when I develop Aids fully, how I could relax and how to behave with my sexual partner. It was here that I received real social -support. I feel good today and I can talk about my HIV- infection openly. I don´t have to hide myself anymore. The aids-help organisation gave me a full-time job and I give advice to others. Some clients want to have a HIV-infected person as a counsellor, because they feel more accepted this way.
Did the Aids-help give you a new insight?
I know today how to react to the signals from my body. One has to create or find an environment where one can relax. I try to avoid people who don’t support me. When you have Aids, you have to go from one extreme to another. I always advise others that it pays to live”.
I met Wolfgang K., 26, a bar-keeper and waiter. He said he knew that he was bisexual since the age of 15. He thinks that he infected himself through a man. He admitted having had one-night stands with different men. He also said he had a junkie-phase and had done needle-sharing a lot of times.
Wolfgang says, “I came to know that I was HIV-positive on December 13,1994. I was in Freiburg at that time and went to the Aids-Hilfe and managed to get a place in this commune. I still have contact with my mother. She lives with another man. Since it was shortly before Christmas, I felt obliged to tell her before Christmas. My mother was in despair and very concerned and understood my situation. She supports me morally as usual, but I know that it´s difficult for her. She maintains her calm outwardly, but she trembles inside. I know it.
What did you expect from the Aids-Hilfe and what did they do for you?
Wolfgang said, “I expected information and personal help from them and I got it, but a bitter taste remains nevertheless. The commune isn’t ideal for me. In the sport- group a lot of people wear masks and pretend to be happy and cheerful. I like riding my bike and go to swim and am relaxed. I´m a Bhagwan-disciple and practice my meditations twice a day. Ever since I started doing my meditations, I haven´t even caught the common cold.
Do you find everything negative here?
When I get the blues – when I´m depressed – there´s always someone in the house with whom I can talk. For me, the commune is an emergency landing pad. I want to study something else that´s why it´s cheaper for me. If I live here two years I´m entitled to a social apartment in Freiburg. As a HIV-infected person, I can´t carry on my sexual activities. I want to cure myself through my meditation and self-hypnosis. I have a T-helper cell count of 875, which is much better than anyone´s here.
How much rent do you pay here and how many euros do you have to live on?
The rent here is exorbitant. We have to pay 120 euros per person. Then we have to pay 15 euros for the electricity and 100 euros for the advisers. That makes 235 euros without the telephone. We get money from diverse sources: the joblessness-assistance, apartment-aid, food- and social -allowances. I live with only 150 euros a month.
Did the Aids-Hilfe help you to win a new perspective?
Through the Aids-Hilfe I´ve become positive-thinker. My basic fear of Aids has vanished. I find it good that we have personal contacts here and that they take us to seminars for further-training on Aids, so that we can understand and cope with the disease better.
Franz P., 38, is a salesman, heterosexual and came to know that he had Aids a decade ago.
I asked him,” How did your family react? Did they support you?”
Franz: “My mother cried buckets of tears when she learnt that I was infected. My wife, who was then pregnant, ignored it till she got the child. Both mother and child were HIV-negative, by the way. After the birth we used contraceptives when we had sexual intercourse.
You said that you live alone now. Was your disease the reason for the separation from your spouse?
Franz: “Actually my drug-problem was the main reason. I had angst and that´s why I started taking drugs again. My wife´s father died of cancer and my wife didn´t want our son to be confronted with my Aids-problem. We lived in a small village in the Black Forest and I tried to live a normal, social life. In summer 1991 I had an infection of the lungs and came to Freiburg. In autumn 1992, I was invited to a brunch at the Aids-Hilfe and met the social worker and the others and was happy to get an apartment.
How do you find your daily life in the commune?
The social worker handles the financial and other bureaucratic aspects and we have brunch thrice a week, during which we talk about ourselves. We don´t have a structured life here. Everyone does things and is responsible only to himself. Our rooms are private and everyone has to knock on the door and when someone says “No!”, it means no, without reasons. There´s a pecking-order not only in the society outside but also here. On the top of our hierarchy we have the haemophilics, then the gays and at the bottom the junkies. The heteros lie between the haemophilics and the gays. I find that one is accepted when one says one’s HIV-infection was due to constant changes of female partners, than when one says it was caused by an infected-needle.
What did you expect from the Aids-Hilfe and what did you get?
I wanted to have information about Aids and contacts with other HIV-infected people and naturally psycho-social support. The social-worker accompanied me to the hospital, through the jungle of red-tape and helped me in daily life. We are allowed to live in the commune till we are physically and mentally fit and can take care of ourselves and our lives. It can also happen that some of us die here. The death-rate is 15 %.
I find that the Aids-Hilfe does predominantly preventive work. There had been a lot of in-fighting in the organisation, but now it´s all quiet. The social-workers have high ideals but there’s also a commercial aspect to it. I’m looking for another apartment and want to go on living.
What would you advise other people in terms of preventive measures like safer-sex, being faithful to each other, no sex or social expectations?
It sounds good but I find people should be open to themselves and to the others. When they are infected they shouldn’t practice a double moral. They shouldn´t try to ignore the matter. The infected should let themselves be guided by their inner feelings. I think the infection destabilises one´s self-consciousness. In the commune I’ve stabilised my psyche, and this is ignored by modern medicine. I live here with people from different social structures and milieu, and we have one thing in common: the HIV-infection. It’s possible to live out one’s ego, because there´s no community-life. It’s every man for himself and the social-worker for us all.
Bruno K.,27 is a mason and was a drug-addict since the age of 13. He’d taken soft drugs and worked at a construction- site and carried cement-sacks on his back, was tired after the work and needed stronger stuff that hash and alcohol. He got Valeron-N from a doctor (10 bottles at once), because the doctor “was too lazy to look up the Red-List. He can’t cope with with the society and can’t live legally. But he’s glad that he has a substitution-identity card now. He was and searched by the police six times a day, because he was well-known as a junkie. He left his parents’ home at the age of 15.
How did your mother react when she came to know that you were HIV-positive?
Bruno: “That can’t be true!” was how my mother reacted. She didn’t reject me because of the infection but because of my long, unkempt hair. She said that she´d refuse to see me as long as I had my long hair. She circulates in high-society. I find such people false and hypocritical.
When and where did you know that you were infected?
I came to know that I had the HIV-infection when I was in jail. I and my girl-friend wanted to contract Aids wilfully, and we left our injections and needles where we´d used them.
What drugs do you take?
I take Methadon, Flanitrazepan and Testosteron, because I’ve become very lethargic due to the substitution therapy. I can sleep sixteen hours a day. When I´m so tired through the substitution-therapy, I find it difficult to get in contact with women. He points his index-finger at his big TV-set and says,” In that box they show Aids-ads in every channel and the people have become tolerant due to the TV-spots.
What do you think of therapy?
I haven’t done a therapy. It’s all useless. The judges give you a jail-sentence instead of a therapy these days. I was in the drug-scene previously and have made my experience with 3.6 grams of heroin. I oscillated between life and death. I realised that I wasn’t ready to die. Now I have nothing to do with drugs. I smoke hash now and then.
Are you trying to reintegrate yourself socially, and trying to get a clear picture about your own situation?
I hate nothing more than this society. I believe in God, but I hate the church. I was born in the wrong century. I wait and contemplate that there are at least 100 ways of killing myself. But I’m alive. As soon as the Aids-symptoms get bad and I can’t take care of my own interests, I’ll take the necessary measures and end my life.
Did you get good tips from the Aids-Hilfe?
I didn´t get any advice from them. I got good and useful advice from the social-worker. When it comes to a quarrel, the social-worker always has the last word. I have a generation- conflict with the social-worker, because I love wearing old, torn jeans with slits, and she sounds like my mother. My long hair and torn-jeans are a form of protest against the mainstream.
What plans do you have for the future?
I’m satisfied as long as I can live, can move about and decide for myself. I can be blind through Aids. In that case I’d prefer suicide (Freitod). I can’t bear the artificial, insincere compassion and sympathy of the others when I have pain, and when I can’t fight back. I’d rather shoot myself before that happens. Despite all that I find life worth living and we can only bring changes as long as we live. The chance that a wonder-drug will be discovered is slim. I have no angst as far as death is concerned. It’s the pain that I’m scared of, and the fear that I might be helpless…
Eberhard N.,36, is an electro-specialist heterosexual from Stuttgart. He knew he had the HIV eight years, and he lives in Freiburg since half a year and was nine months at the Aids-Hospice in Oberhammersbach.
Do you know how you infected yourself?
I had a girl-friend named Petra and she was also HIV-positive. She didn´t care less. I was behind bars for 18 months because the police caught me with drugs. I´m a dry alcoholic. At that time, I didn’t have anything to drink. A junkie friend offered us heroin and we used the same needle. The bloke was positive and gave us his needle.
How did your family react?
They shoved me off. In 1993 I landed in the Hospice and my family visited me there. I telephone my mother every week. She wanted to visit me in December 1994 and now it’s August 1995, and she hasn’t showed up as yet. I have liver-cirrosis and it would mean my death if I’d drink.
How did you come to Freiburg from Stuttgart? Who helped you?
I’m a well-known alcoholic in Stuttgart. I got in touch with the Aids-Hilfe through the Hospice. I got an apartment and received help from Freiburg. On Christmas I even received a financial shot from a girls’ school. I bought a stereo-set with the money, because I can’t live without music.I like Neil Young.
Do you take medicines? What are your future plans?
I take only Hepaloges N ( a plant-based liver-remedy). I find that a healthy psyche is the best medicine against disease. One ought to keep one’s hands away from medicines. I live for now and today. What´s the use of making great plans? How do I know what it’s going to be like in a year? I live intensively though. My thoughts are good. I smoke a joint or a pipe now and then. I don’t drink. I haven’t given up as yet. One should keep on fighting. One can die fast—in a matter of days. When I was at the Hospice, I thought I was lost. I’m a Pink Floyd fan too and went all the way to Strassbourg (France) to attend the concert on the 9th of September 1994. One has to gave a goal. I want to live here, because after two years I can get a new apartment. And I want to have a girl-friend…
“There’s a lot of stress involved in working with Aids-patients because one is confronted with difficult situations. You have to make quick decisions and ask yourself later: was it necessary or not “, says the guy of the Aids-Hilfe Freiburg. It´s a life- and work-situation. The social workers have to give hope to the infected clients and then see with their own eyes how they deteriorate physically and mentally. How does a social worker react to the deaths?
He shrugged his shoulders and raised his hands up and said, “It’s the 1st of November (Allerheiligen) and I ask myself: why do you give the dying company? In all those years I haven’t visited a single grave. I can’t let go of my clients before they die. I just can’t bear to do it after a certain amount of deaths through Aids…”