The Back Cover… 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 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 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 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) 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 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 Lars and Börje… and the cover of my book

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 beside Lars and held him 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 understood 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 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 write about something that has come before me, and so it is with this story about the dancer. I found a note about meeting Kenneth.

At times 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 theater 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 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, although I was not aware of things like that, as I was still a child.

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 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.

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, 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 she had said that he didn´t have to be ashamed about having AIDS. Which he denied he had.

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 o k – 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 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 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.

An extra note about that.

Lia Schubert, who had lived many years in Stockholm, let me take classes for free in her school, when I was a child.

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 am grateful I was strong enough to not listen to any of these strong personalities. I wrote my book about the Holocaust and the Survivors, and it was also published in Poland. My papers are at the US Holocaust Memorial Museum in Washington, DC.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

There are few who talk about them…

Dear friends,

as a writer, and a lay person I have interviewed and followed a number of people with HIV, both in Sweden and in San Francisco, and I have also followed partners, family members, volunteers and staff at hospitals, and places like Coming Home Hospice, Names Project and SHANTI in San Francisco. 

The title To be a witness comes from an interview I made with a volunteer in San Francisco, Gary Shepard. He said he was there to witness the suffering of his client, because if no one saw it, it was meaningless.

I had to add the word really, To really be a witness, to avoid songs and Christian links with testimonies of faith on the Internet, but I don´t mind; To really be a witness is good, to really see, to really hear. 

I have published a book in Swedish, called There are few who talk about them, meaning the people that died of AIDS related illnesses, or sometimes trough suicide, during those years. It was a very silent epidemic in Sweden, and now one rarely hears about the people that passed away. 

This work started at a graveyard in Stockholm, in 1986, and I will write a bit about what happened in Sweden, but this blog is mainly about what I saw and heard in San Francisco, and Oakland, from 1987 until today. 

You are welcome to follow me on my journey, as I look back. 

Pia-Kristina Garde