I did not know what to do…

I have realised that I have to go back and forth between what happened years ago, and what happens now.

Tomorrow I will speak for a group of HIV positive people at the Posithiva Gruppen/The Posithive Group in Stockholm, and tell them about my work in Sweden and in San Francisco, between 1986 – 2018.

The first time I spoke for that specific group was in 1992. I had been back and forth to San Francisco, following up interviews from 1987, and I was going to tell them about the people that I had interviewed.

But as I stood there, it struck me that most of the people I had spoken to in San Francisco had since then died, and that the men sitting in front of me… I just froze for a while, and then I almost jumped from the subject, and started talking about the Names Project. I had brought fabric and pen´s with me, and suggested that they should do a Panel for their friends that had passed away, and they immediately started. Now that I think about it, they may have frozen too.

They called it Lovers and Friends, Sweden. 

The two men holding the Panels were Tommy and Calle, a couple. Very nice people, a great support.

Tommy, who stands alone, became very depressed at times, and he was saved from several suicide attempts. He became blind, and died in hospital, after a sudden desperate burst of hope, because of DNCB. (The chemical used in the development of colour photographs, that for a while was thought to stop HIV if  you painted it on your body. A Swedish man with HIV, living in San Francisco, came to Sweden to promote it, and he was very convincing, but it did not work, and he passed away.)

Calle was struck with a number of diseases; expressive aphasia, brain damage and paralysis on one side. He only saw two colours, green and red, and the nurse that took care of him, said that he was lonely in his brain.  He died about a year after Tommy.

Calle had specific wishes for his coffin. He wanted to rest on silk sheets, he wanted to be dressed in jeans and a flannel shirt, and he wanted to bring a bottle of whisky, in the coffin.

At this time, in these circles, with so many funerals, I think especially the caretaker Krister Pettersson, that I have mentioned before, let go of a lot of rules, so on this occasion, since the bottle could not go in to the Crematorium, Krister and the nurse poured  whisky all around Calle in the coffin.

When we had made the Panels, they were sent Express, Door-to Door, to Washington, DC, and one of the volunteers found them, so they were part of the display of the AIDS Memorial Quilt.

Tomorrow I will speak for a group of HIV positive people, I don´t know if there are any long time survivors among them, but after all those years, the situation is quite different from when I stood there, not knowing what to do.  I will tell them this story.

 

 

 

 

 

 

 

Some words, while I recover…

I was going to write a piece about my attempts to talk to people in New York in 1987, but I´m sick in a mixture of asthma, allergy and very strong Granchild-germs.

But I want to leave you with some words, that have been on my mind lately.

I think it was in 2014, that my friend, the late Michael Crisp, seen here, took to me the  National Aids Memorial Grove in San Francisco, where names of the dead are engraved in circles.

He showed me a poem by the late Thom Gunn, that is also engraved in the monument:

Walker within this circle pause
Although they all died of one cause
Remember how their lives were dense
With fine compacted difference

 

When Angels smile…

A little bit more about the name of my blog.

When I came to San Francisco in 1987, I got to meet Gary Shepard. He was one of the ”Emotional Support volunteers” at SHANTI.
Before I met him, I spoke to another volunteer, Brad C.  who turned out to be HIV positive, and he really admired Gary because of his commitment to his clients, and said that if he got sick he would like Gary to be there with him, as a volunteer.

I interviewed Gary about his work, and he told me about some of his clients. I want to tell you about one of them, Ed, because even I met him, at Coming Home Hospice, in the Castro District in San Francisco.

Ed had dementia and could no longer speak, but the could do two things; smoke and smile.
He was lying in his bed smoking, skinny arms and legs protruded from the white sheets. He was not to be left alone while smoking, so there was always someone with him when he smoked. Even I, who was a smoker at the time, spent some time with him when I visited Coming Home Hospice.
But that was not the only reason why people entered his room, they came because of his smile. If I should try to liken it to something I would use  words like angelic and Infinite goodness, and you wanted to be smiled at like that, over and over again, it was almost addictive.
When Ed was dying he was given Oxygen, and Gary told me that Ed moved his hand, slowly, back and forth, back and forth, as if he was still smoking. Gary stayed with him until a few hours before his death, but as soon as Gary came home, they called from the hospice and said that Ed had passed away.

Gary talked about his work as a volunteer. He described himself as a witness to the suffering of his clients. If no one saw what they were going through, it would be meaningless. I liked those words, and decided that my work was to be called To be a witness, since I am also, or was, a witness.
Many years passed, and there was and is, a silence around HIV/AIDS, and when my book about what I had seen in Sweden came, I called it Det är få som talar om dem/ There are few who talk about them.

When I had decided to write a blog about what I had seen in San Francisco and Oakland, I searched the Internet for the words To be a witness, but often found religious pages, religious testimonies, so I added the word really, and that worked: To really be a witness. To really see, to really hear.

Gary and Ed are just a few of the people I want to write about. I was lucky enough to meet so many teachers during this time; clients, lovers and family members, volunteers and hospital staff, that I followed, for as long as it was possible.

I want to end by saying that Gary, that we will hear more about in the blog, kept Ed´s ashes in his home for four months, when he, together with a friend of Ed´s, spread his ashes under the Golden Gate Bridge.

In my own family…

I come from a Pentecostal background, and I have always admired and sometimes envied my family  for their very strong belief´s and their trust in the Lord.

But I have met resistance against my work, from some family members, both in Sweden and in the US. That has been surprising for me, because of the families missionary work, in Africa for example.  But the resentment has had to do with homosexuality.
My favorite old aunt called and warned me, not only for the sake of my soul, but also because she was afraid I would hurt the family. The only thing that could save a person, she said, was salvation,

Even my foster mother was against it, so when I refused to quit, she wrote that we should not have contact for a year.
However, two things made her change her mind; the sudden death of my biological mother, and the fact that Sighsten Herrgård, the famous model and designer, came out as having AIDS. He was friends with members of the Royal family, and that helped. One of the princesses, Princess Christina, appeared with him on television.

When I came to San Francisco in 1987, and met some of my family members, it turned out to be very upsetting for some of them that I was there to interview people with HIV/AIDS. Why would I do that?!
I tried to explain, and talk about all the diseases that befell people with HIV and about how ostracized many were, and… But I could not get through to them, and they decided to leave. (There was one exception: One of my cousins cried and held my hand under the table.)

I was not in contact with those family members for about ten years, until one of them apologized, blaming his behavior to lack of knowledge about contagion – his old mother was present at the time, and he stopped me from hugging her, or even shaking her hand when we said goodbye, and I never saw her again. Nor did I see my favorite old aunt again, she wold not let me in to her house on my return to Sweden, and she passed away not long after that.

Many years passed, and Facebook came, and I became friends with the people that had been in the meeting, and several other family members from Canada and the Los Angeles area, like my cousin Billy.

One day Billy asked me why I posted so much about HIV and AIDS on my Facebook page; links to SF AIDS Foundation, SHANTI and Open hand, etcetera. I told him about my work, and then he wrote:

My daughter died of AIDS.

I couldn´t have been more surprised. Someone in our family had died of AIDS… and I had never heard about it. Her name was Shannon. She was 25 years old when she died, in 2002.

Billy had suddenly received a phone call that his daughter was sick, and would be coming on a plane to Los Angeles. She was a travelling sales person, and there were long periods when she did not see Billy and his wife Sharon.
He went to the airport, and saw when she got off the plane that she looked sick, and that she had lost a lot of weight.
Shannon had had some kind of seizures and was taken to hospital, where it was discovered that she was HIV-positive, but also that she had developed AIDS.

Billy have friends that are gay, and they helped him get in touch with an AIDS clinic so that she could start antiretroviral treatment.
Sharon and Billy took care of Shannon, and they tried to help her gain weight and strength, but one day Sharon called Billy at work and said he had to come immediately, because Shannon was having new seizures and the ambulance was on its way.
The ambulance was still there when he arrived, he ran into it and told Shannon that they would be coming right after. She said Daddy, it will be alright, and then the ambulance left.
But on the way to the hospital Shannon had a massive heart attack, and died, so when Billy and Sharon arrived at the hospital, they were just informed of her death and taken to her body. This was three weeks after she had come home.

Billy wants me to talk about this, to make people understand that this can happen to everyone, not only to certain groups. Shannon had no idea that she was HIV- positive, she only thought it looked good that she was losing weight.

Billy took me to her grave in 2014.

Some of the people in the Swedish book…

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:

Benny Henriksson

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.

Kerttu Sturesson

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 diehe 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.

Rolf Veidahl

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.

The Back Cover, In Memory of… and Words of Gratitude.

The Back Cover – I can´t get a good photo of it, so I present it like this instead.

I was present at the first display of The Quilt, in Washington 1987, and the photo is taken by me.

I had made three Panels, two of them were present, but not yet sewn on to the Quilt.

The one for Matti however, was in the Quilt and in the poster for THE NAMESPROJECT : A National AIDS Memorial. ( The poster has lost some of it´s colour through the years.) You find the Panel in the middle, to the left.

Matti was the first person I met with Kaposis Sarcoma. He was absolutely covered by it, especially his face. He was a young man from Finland, living in Sweden with his partner Mikael.

The other Panels were for Peter C. – the man whose ashes I helped bury – and for Roar, a Norwegian man living in Sweden, and as far as I know, the first man who died of AIDS in Sweden. I knew him and his former partner Sighsten Herrgård – who was a well known model and designer – and the first famous person in Sweden to come out as having AIDS, in 1987.

We later made a Panel for him as well.

The text on the Back Cover says it was a senseless time, when so many died, often after long suffering.
The antiretroviral medicines came in 1996, and changed people´s lives dramatically, but they unfortunately came too late for most of the HIV positive people in my work.

I am not sure people know what it was like during those difficult years. I certainly did not know how totally wasted a body can be that has a very low or no immune system. One seldom hears about this now, and one seldom hears about the people that died.

In Memory of…

It starts with Jan-Olof ”Nola” Morfeldt.
A much loved man, one of the founders of Noaks Ark, that unexpectedly died of cancer.

In Memory of all the people that took part in Medical trials, but never lived to see the arrival of the antiretrovirals.

In Memory of the people that couldn´t live with it, but killed themselves.

In Memory of the lonely and abandoned, that no one wanted to be with when they died.

In memory of the people that were murdered because of their sexual orientation.

 

Words of Gratitude.

I write about the gratitude I feel for the people in the book, for letting me follow them, and I thank their relatives, lovers and friends for all of their help with the book.
I also thank some other people, especially the late doctor Elisabeth Kübler-Ross and Peter Månehall, Ombudsman for HIV-Sweden, who both encouraged my work.

I am very grateful for the work of the late Randy Shilts, (I am aware of the Patient Zero controversy) whose book I have read several times. During all those years, in times of doubt, I have only had to put my hand on, And The Band Played On, to continue.

Another help – as strange as that may sound – has been the many many obituaries in Bay Area Reporter, often sent to me by my friend, Ann Soucy, who worked there at the time.
I have read them over and over again, looking for information about the men; their lives and interests; who was with them when they died; how was their passing described, and what charities were people asked to donate to, in memory of them.

I want to end this blog post by quoting one of the obituaries, from January 21st 1993, about a man called David.

Didn´t like charity.
In his memory,
make a friend, share a drink
adopt a stray.
We love you Davey.
FUCK AIDS

Let me tell you about my Swedish book, and about Lars and Börje…

The book I published in October 2018 is called, There are few who talk about them.  I will tell you about some of the people in the book.

Let me start with the Front cover.

It is a self portrait from 1991 by the late artist  Lars Rading.

 

I met Lars in Greece, 1981. We were both on scholarships, he as an artist, and I as a new writer.

Lars went to New York that year, I don´t know when, but he may  already have been HIV-positive when we met, or was just about to be. He thought he was exposed to the virus in a bathhouse, in New York, but he wasn´t sure.

Lars became a public spokesperson. He was often interviewed, there were television programs made about him, and he painted, cried and painted, to keep him self from breaking down.

At one point, as his health was declining, he said he was very tired of being the Positive HIV-positive, because that was often how he was portrayed; It is possible to live a good life and be creative even if you are HIV-positive, and so on.

During the last years of his life he met a man who was also HIV-positive, Börje, och they moved in together, and seemed very happy. During the last months of his life, Lars planned for an auction of his art, together with his old partner Terje, so he could create an HIV-Culture Fund in his own name.

I followed Lars for several years, off and on, just until he was leaving for Spain, where he and Börje were going for a holiday. The auction had just taken place, and had brought in much more money than expected.

Lars was very worried about that journey. He was afraid something would happen, and called a number of friends the night before. He was by this time so weak that he had to sit down to brush his teeth, or to dry him self after a shower. But they left.

During the flight Lars became very sick and had to be carried off the plane. Börje carried him in to the apartment and sat and held Lars up, so he could breathe. After a while he propped him up with pillows. Lars was now actively dying as his lungs were filling up, but he did not understand it. He kept on talking about a friend of theirs that needed support of some sort.

Börje later told me that he afterwards understood  that Lars was trying to hang on to the light. Börje kept on turning off the light, so they could sleep, and Lars kept turning it on.  But suddenly, half asleep, Börje realised that it was silent, and that Lars had died.

Börje walked to the nearest hotel and said What do I do? It was in the middle of the night, but the man behind the desk said it was no problem – many tourists died there – so  within an hour a doctor arrived, and some time later, Lars was taken away.  It all happened very fast, and way too fast for Börje. The coffin arrived in Sweden two weeks later.

Lars left his art, and the money he had to The Lars Rading HIV-Culture Fund, which was run by Noaks Ark, and his close friend Terje. It worked for many years, but is no longer there. Lars´s paintings were often sad, dark, and often about death, and it became impossible to sell them, as the focus around HIV/AIDS changed and became more about living, than dying.

Börje passed away, a little bit more than two years later, in 1995. A tall gentle man, struggling to learn to live without Lars.  Hoping to meet him again.

 

About Kenneth… The lovely, charismatic dancer.

Sometimes I have to refer to the past and my private life, and here is some of that.

My mother´s family emigrated to the US and Canada around 1950. My mother did not go with them, because she had gotten married and was expecting me.

From an early age I wanted to be an actress, and I got in to Drama school when I was 17, and spent 3 years there. But I was really out of place, so in 1975, at the age of 24, I decided to leave the theatre and follow in my relatives footsteps, and go to the US, to California.

On my last evening in Stockholm, I ran in to two dancers that I had  not seen for several years, and one of them was Kenneth.

I met Kenneth when I was a teenager, taking classes at Balettakademin/the Ballet Academy in Stockholm. He was a very charismatic man with a cheeky smile, that I think was attractive to both men and women. I did not see him for many years, but I heard that he lived in Israel, and danced for a ballet company there.  I also heard that he had had an accident, where he fell off the stage.

When I started preparing this work, here in Sweden, I sent out letters to people with HIV, and to volunteers, through two different organisations working with HIV/AIDS, RFSL, a LGBT organisation, and Noaks Ark.

One day I received a phonecall. It was Kenneth, and I was really surprised, because he had never called me before.  He was very upset, and told me in a stern teacher´s voice to stop this at once. What kind of nonsense was this! What did I think I was doing!

I don´t remember what I answered, I was kind of dazed. By this time I knew he was gay, and I thought it might be at least interesting to him.

Some years passed, and then I was told he had AIDS, but that he, even though he was a patient in an AIDS Ward, refused to acknowledge that he had the virus. He refused almost all visits, he only accepted a male friend and a female dancer. His old mentor from Israel had to leave. He would not let her in, and when she sent flowers to him, he sent them straight back. It was probably because she had said that he didn´t have to be ashamed about having AIDS.

In 1990 I gave birth to my son, and on his first birthday I went to the hospital to show the staff that he was ok – he had been born two month early.  I was very close to the AIDS Ward, and decided to dare to visit Kenneth, and show him my son.  He actually let us come in, and I sat on a chair with my son in my arms.

Kenneth then told me he had AIDS, (I did not ask about it,  he volunteered that information), and that he had probably contracted the virus from a blood transfusion after his accident, or maybe it was something he ate, or… it could be anything, but he didn´t mention sex.

He seemed to be hiding a bit under his sheet, looking at us with big eyes, and suddenly he started singing an old fashioned song, about a little sick girl in a hospital bed, wasting away from something that was wrong in her chest.

We said goodbye, and not long after that I heard that he had died. His two friends that had gone home over night,  were called to his bed in the morning, but then they were stopped because he had just died. So they took their time and ate breakfast.

When they arrived he was still warm, and his friend said that it was the last warmth they received from him, and that they loved him.

Kenneth didn´t want a funeral, no obituary, nothing.

The dancer brought his ashes to Tel Aviv, and early one morning she walked out in the water, and spread his ashes. It was very still, she said, but suddenly a wave came and took the ashes away.

I found the note about my last evening in Stockholm, tonight, and I thought I would start with Kenneth, the talented charismatic dancer, even though he didn´t think I should do this.