To really be a witness

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.