Månad: mars 2019

A little bit about the name of my blog.

When I came to San Francisco in 1987, I met Gary Shepard. He was one of the ”Emotional Support Volunteers” at SHANTI.
Before I met him, I spoke to another volunteer  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.

Ed in his bed.

In the photo under this there is man in the bed – I saw him having extreme hallucinations. He was a nurse at San Francisco General Hospital.

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.

I come from a Pentecostal background in Sweden, and I have always admired and sometimes envied my family for their very strong faith 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 surprised me because of the families missionary work, in Africa and China 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 name. The only thing that could save a person, she said, was salvation.  (I have since then changed my last name, but for other reasons.)

Even my old foster mother was against it, so when I refused to quit, she did not want to have any contact with me 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 certainly 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 how sick people were 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 young relative 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 how HIV was transferred. His old mother was present at the time, and he had 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 in Sweden again, she wold not let me in to her house after my return to Sweden, and she passed away a few years after that.

Many years passed, and Facebook came, and I became friends again with two of the people that had been in that difficult meeting, and with several other family members from Canada and the US, the most in California, 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 actually developed AIDS.

Shannon Georgi.  My second cousin.

 

Billy have friends that are gay, and they helped him get in touch with an AIDS clinic so that she could start Antiretroviral treatment. But it was probably too late.
Sharon and Billy took care of her, 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.

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, some were People with AIDS, others worked with People with AIDS:

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, and 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 Larsson.

Leif became involved with funerals, together with Krister Pettersson, an undertaker, because people were treated badly. 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 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 representatives from 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, cried when she told me 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. I suddenly 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 where there was an AIDS Ward, Roslagstull. She had black hair, make-up, jewelry, and 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 she was so different from other priests.

Ulla Britt Persson

Ulla Britt´s son, Johan, died of AIDS in that hospital. On her visits to Johan, she met many men with AIDS.  She would go around in the evenings and visit, and pray with them if they wanted to. She conducted the funerals 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 his cat that had died some time before him. He had buried the cat in the plot he knew he would soon be buried in. They rest next to the church that he worked in.

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, and I asked him if we could talk, 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 obituary 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. But Rolf was at that time rather weak and he 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 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 color 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.

Some of the people in this blog come back in other posts, like Matti, in the post Matti… and the lesions. 

The other Panels were for Peter C. – the man whose ashes I helped bury – and for Roar, a Norwegian man living in Sweden, and the second man to die 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.

The text on the Back Cover says it was a senseless time, when so many died, often after long suffering. The Antiretroviral drugs 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 today 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.

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, and hope that we, together, do good by publishing the book.

Inside the book I thank some 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 (mostly) 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 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

The book I published in October 2018 is called, There are few who talk about them/Det är få som talar om dem.

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

 

I met Lars in Greece, 1980. We were both on scholarships, he as an artist, and I as a writer.

Lars went to New York the year after, and 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 a fundraising auction of his art, together with his old partner Terje, so he could create a 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 he 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 beside Lars and held him up so he could breathe. 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 who needed their support .

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.

He panicked for a while, and then 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 active. Lars´s paintings were often sad, dark, and 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.

 

Sometimes I write about something that has just come before me, and so it is with this story about a dancer – I found a note about meeting Kenneth.

At times I have to refer to my private life, and here is some of that.

I have, or I must now say had a big part of my family in the US. Most of them emigrated when my mother was expecting me in 1950, but in 1975, after some dramatic years in the theater world, I decided to follow in the family foot steps 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 him when I was a young teenager, taking classes at 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/AIDS and to volunteers, through two different organisations, RFSL – a LGBT organisation, and Noaks Ark, that educates about HIV/AIDS, and at the time trained volunteers.

One day I received a phone call. 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, but…

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, that I happened to know,  and a female dancer.

His old mentor from Israel, Lia Schubert, 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 I think she wrote a card to him saying that he didn´t have to be ashamed of having AIDS. Which he denied he had.

In 1990 I gave birth to my son, and on his first birthday I went to the Neonatal Ward in the hospital to show the staff that he was o k – he had been born two month early.  It was very close to the AIDS Ward, and decided to dare to visit Kenneth, and show him my son.  He actually let us 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 the accident when he fell off the stage, or maybe it was something he ate, or… It could be anything, but he did not mention having 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 who had gone home over night,  were called to the hospital 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 meeting Kenneth, tonight, so I thought I would start my work by writing about him, even though he didn´t think I should do this.

An extra note about that.

Kenneth´s mentor Lia Schubert (1926-1999), originally from Vienna in Austria, let me take classes for free in her ballet school in Stockholm when I was a child. I knew nothing about her background at the time. She eventually moved to Israel.

Many years later when she heard that I was working on a book about Survivors from the Concentration Camps, she had the exact same reaction as Kenneth had to my work on HIV/AIDS.

I wrote my book about the Holocaust and the Survivors that came to Sweden in 1945, and it was also published in Poland. My archive with papers, photos and letters about this is at the US Holocaust Memorial Museum in Washington, DC.

I am grateful I was strong enough to not listen to either of these strong personalities.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

As a writer, and a lay person I have interviewed and followed a number of people with HIV/AIDS, both in Sweden and in San Francisco.

I have also followed some partners, family members, volunteers and staff at San Francisco General Hospital, and Kaiser Hospital, and in places like Shanti, Coming Home Hospice and Names Project and at the AIDS Project of the East Bay. 

This work started at a graveyard in Stockholm, in 1986, and I write about how it happened in : About. 

In 2018 I published a book in Sweden called  There are few who talk about them. It is a diary from 1985 until 2018, where I present notes and interviews with people with HIV/AIDS, and family members, partners, and also people working with AIDS, nurses, a priest who lost her son to AIDS, and an undertaker.  

I have realised that people do not talk about people that have died of AIDS.  Had they died in a car or a plane crash it would have been different. The undertaker I mention above told me about the struggle he had with parents when it came to obituaries; it could be about the cause of Death, and the partners name, and even the partners presence at the funeral. 

Hence the title: There are few who talk about them.