When I came to San Francisco, somebody taught me the words:
How to do AIDS.
People really ”did AIDS” in different ways. I know of people who almost immediately arranged for their funerals, whereas others totally ignored the virus, and concentrated on something else. I was told about a man in San Francisco, who had bought one of the Victorian houses. His last phone call in life was about a specific detail in the houses´s wood.
Here are some people in Sweden, that did it in different ways:
A man I knew, sociologist Benny Henriksson, kept on working at the hospital, in his room. He actually got his Ph.D, in the hospital bed, about a week before he died, and he continued to work on an article he wanted to complete. In his obituary the author´s wrote that the hospital staff patiently climbed over wires to his computers and printer. And what did he write about? Other people with HIV. His doctoral thesis was called: Risk factor love: homosexuality, sexual interaction and HIV prevention.
I have interviewed an assistant nurse, Kerttu Sturesson, who from the start completely gave her life to work with people with HIV/AIDS and was really praised for it. Kerttu said that the worst day of her life, was the day she had to retire.
One of the stories she told me, was about a man who had just been told he had HIV by someone else in the hospital. He stopped for a moment in her doorway, and said: I am going to kill myself, he then walked away in a haste. She got up, ran after him, stopped him, brought him back to her room, talked to him, and that man is still alive today.
Leif Larsson and Krister Pettersson
Leif Larsson, a nurse, working specifically with HIV/AIDS, told me about the many silent suicides that took place, where gay men with HIV just removed themselves from the face of the earth, leaving no letters, no explanations, nothing.
Leif got involved with funerals, together with Krister Pettersson, an undertaker, because no one had thought about informing the undertakers about HIV/AIDS – and they were very scared.
And not only them, but the whole chain of people that were involved with Death; from the people picking up the body from the home or the hospital, to the autopsy technicians, that out of fear of being infected with HIV by the needles, would not sew the bodies together after autopsy – so the bodies were just placed in a black Body Bags – to the undertakers that did not want to open those Body Bags to dress the bodies, or to let the families see… The list goes on and on.
Leif and Krister gathered most of the Funeral homes to a meeting, to inform them about HIV/AIDS. Some refused to come.
One of the stories in the book is about a young man called Pontus. His brain would swell up and press against his skull and he was in a lot of pain, so he sometimes had to call for an ambulance. Since he was so young, the ambulance team would become suspicious, and ask him, in a very sarcastic way, if he had AIDS too.
When Pontus had died at home, his family had arranged his body and placed flowers in his hands, but when the men came to take him away, they just let him fall down on the stretcher, like a sack of potatoes, so his arms and legs fell out on the sides. Pontus´s mother, told me crying about this final humiliation of a young man who had just turned 25.
Krister Pettersson, became very much involved with HIV/AIDS and together with many of the young men, that knew that they were going to die, he created wonderful funerals. He said they taught him a lot because they were often very creative people.
For example, he worked with one of the young men in the hospital, visiting him on the AIDS ward and they had put together a program of wonderful music and Krister thought that they should listen to it, almost like a dress rehearsal. But the young man died, before they could do it.
Leif Larsson established a hospice outside of the center of Stockholm; Maria Regina Hospice, and put a lot of effort into it. Unexpectedly, I found out that he had died – he had told very few people that he had the virus. He died at home, in the presence of his mother, his partner and a Catholic priest. The person that took his body away, was Krister Pettersson.
Ulla Britt Persson
I often saw a woman in one of the hospitals, Roslagstull. She had black hair, make-up, jewelry, she wore a black leather jacket, high heeled shoes and a clerical collar, as she was a priest in the Church of Sweden.
I did not know anything about Ulla Britt, but I found her to not be like other priests – she was just so different.
Ulla Britt´s son, Johan, died of AIDS in that hospital. On her visits to Johan, she met many men with AIDS. Ulla Britt would go around in the evenings and visit, and pray with them if they wanted to. She conducted the burials of many of these men.
Ulla Britt´s son Johan had been studying Theology, and he had been seeing a priest, the priest that would later bury him.
When Johan passed away, Ulla Britt was approached by a doctor who wanted to do an autopsy on him for science and she said no: He has been used enough. The doctor replied, You know we can do it without your consent? She still said no.
Ulla Britt knew what would happen, so she traveled with her son´s body together with Krister Pettersson, the undertaker, to the morgue. She covered her sons body with roses, locked the coffin, and kept the key, and to this day she still has it.
Ulla Britt knew that Johan had gotten the virus from the priest that buried him, and it was a difficult situation. The priest eventually became very sick, and he kept calling Ulla Britt in the evenings. His mind was going and he asked her to sing for him, over and over again.
One day Ulla Britt was approached by a friend of the priest, who said that he couldn´t die – he needed her to forgive him, he needed absolution. She said she would think about it, but he suddenly died, before she could visit him.
After my book was published, she told me this story:
Before he was buried, she went to the morgue. She said he was so small and thin, and looked so cold in the coffin – she wished she had brought him a blanket. She forgave him when she was standing there.
The priest had no family and is buried next to the church that he worked in, together with his cat that died some time before him.
I finally want to tell you about Rolf Veidahl, a Norwegian man, living in Sweden. He was a warm teddy bear of a man, who totally baffled me by telling me that he had really struggled to get AIDS.
Rolf had a very self-destructive side to him. It had to do with sexual humiliation, with emphasis on humiliation. He strove to be infected with the virus, over and over again, and he exposed him self to many difficult things, dangerous encounters with men for example.
I was stunned, and did not know what to do with this information. In the end, I sent him the interview, writing that I felt that our interview was part of the humiliation that he exposed him self to, and that I had no idea how to use the interview. He wrote back that he understood.
Sometime after that, I saw Rolf in one of the hospitals when I was visiting another man. After that visit I saw Rolf and we talked for hours. He had become aware of what he had done to himself, how extremely self- destructive it was, and I saw an opportunity for us to talk again and he agreed. We set up several meetings, but he cancelled or did not show up and then I lost contact with him.
I had by this time changed my own life pretty dramatically. I was working full time in a Museum Library, I was taking care of my son, was working on several books, and kept in touch with the people I had met in San Francisco.
One day I was visiting an art gallery and a friend of mine said that Rolf was there, but I could not see him. She had to point him out to me, and I just stood there… looking at him.
I had heard that Rolf had started psychoanalysis. He was always good looking, but in front of me stood one of the most beautiful men I had ever seen. He had lost a lot of weight, his beard was gone, and I just couldn´t believe it was him. There he was, an extremely good looking, long time, survivor.
But, things were to happen. One day we spoke briefly on the phone, and Rolf told me that he had been diagnosed with Pancreatic cancer, and had one to three months to live. I really hoped there would be time to talk, but again, I lost contact with him. He moved to another part of Sweden.
One day I saw his death notice in the paper. I just stared at it, I couldn´t take it in, but there could only be one Rolf Veidahl.
Rolf had not died as the doctors had predicted, it seems like the antiretrovirals had an effect on the cancer, so he lived until 2013 and even celebrated his 60th birthday with his friends. Rolf was at that time, rather weak and lost one ability after the other.
Rolf´s friends invited him to Mallorca. His best friend and husband, Niklas, told me that they helped him out in the water – he was very thin at the time, walking with crutches. Niklas remembered Rolf looking out over the water and the landscape, taking it all in, for the last time.
Niklas told me that Rolf changed a lot during the last years. His sexuality, that had really driven him was calmer. It didn´t eat him, as Niklas put it. The psychoanalysis had helped him a lot, and one of the last things Rolf asked Niklas to do, was to call the analyst and tell him how much he had meant to Rolf.
In the end, Rolf welcomed death. He was in severe pain because of the Pancreatic cancer. He was prescribed a lot of Morphine, so he slowly, slowly moved into death with his sister and Niklas by his side.
The next time I write a post, it will be about how HIV/ AIDS has affected my own family.