Författare: Pia-Kristina Garde

A couple of weeks ago (November 2019) an American journalist covering the early years of the AIDS epidemic, contacted me about a man I knew, John Lorenzini.

It is possible to search for names of the dead in an online searchable obituary database created by GLBT Historical Society and Bay Area Reporter : obit.glbthistory.org, and it is also possible to leave notes in memory of someone, and that is where she had found me, as I wrote a few words about John there.

Here is his obituary, I don´t know who wrote it.

John had been my teacher at The AIDS Project of the East Bay in Oakland, in 1987, and I had interviewed him, and tried to stay in touch.

I had also seen him in a film about AIDS, so when we met in Oakland, I was pleasantly surprised.

I was happy to write about him, although I hope to write a special chapter here, about him. So I wrote a bit for her, but have not heard from the journalist  since then.

It is nice when what I write land somewhere, not only disappears in to cyber space. She eventually got back to me, so the information landed! But I have no idea what she did with it. I am too helpful at times.

But here goes:

When I arrived in San Francisco…

I went to SHANTI as soon as I could.  I had been in touch with a woman called Marta, even on the phone from Sweden, and she had told me that she personally knew 12 people with AIDS that I could talk to, and that felt very reassuring.

However, when I came to SHANTI, she was no longer working there, so I had to start all over again.

Marta had told me to not get stuck in my original ideas, something I reluctantly listened to, but it turned out to be a very good advice, because there was so much to take in, in San Francisco, and it forced me out in the wild, so to speak. 

It was such a difference to Sweden, where everything was very secretive. In San Francisco so many people were involved, and I eventually learned that many of the volunteers, and sometimes staff were HIV-positive themselves, and that there were situations when a nurse would come to an AIDS Ward and realize that he or she knew every patient on that Ward, and did not know where to start, what room to go to.

It is still very secretive in Sweden. Had all these often young people died of cancer or in car accidents, and not by HIV/AIDS or suicides related to it, we would have heard about them. But they just disappeared. The book I have written is called There are few who talk about them.

I want to tell you about the people I met in San Francisco and in Oakland, and how I met them. Some people I only call by their first name, others if they were official, by both first and last name.

Some of the hospitals I mention have changed names, but I keep them as it was then.

I listened to a presentation about SHANTI and its volunteers, the Practical Support Volunteers and the Emotional Support Volunteers.

We were told that a client could get a volunteer if he or she had about 6 months to live.

The Practical Support Volunteer would help with cleaning, doing laundry, shopping etc. – to save time for the client to do other things, so called quality time.

The Emotional Support Volunteer would be there for a certain amount of time per week, to be there, to listen, and help.

SHANTI also had a counseling program at San Francisco General Hospital, where the counselor became an ”advocate” for the client. It could be that the parents arrived, and they had not known their son was gay, and now he had AIDS. They might be scared, and the counselor was there to explain and help the family. And to show, for example, that it is ok to touch a person with AIDS, by touching the client.

Was there a lot of burnout? Some of the volunteers returned after their client´s death, others didn´t. Since 1984, the speaker said, there had been 3600 cases, and in July of 1987, half of them had passed away.

One thing that happened during the presentation, was that we who were visiting were asked to introduce ourselves, and one man in the audience turned out to be a Swedish man, working for the Swedish church,Sten L.

He also turned out to have read a book I had written 10 years earlier about dying patients in Sweden and at a hospice in England, and that was a pleasant surprise.  He later turned out to be a good help at San Francisco General Hospital. 

But back to SHANTI.

I kept on asking for help, for days, and I was eventually given some names of People with AIDS, and one volunteer. There was a man called Paul Stern that helped me.  He mentioned a woman with AIDS, Meredith Miller, one of the few women that had come out as having AIDS. He was not sure I could meet her though, as she was very tired having been interviewed a lot. It was a no, but Meredith Miller turned up in my life later. (See my previous post.)

The first names were Keith and Gery. They had been together for a very long time.

Through them I met Sarah Finnegan, who was Gery´s emotional volunteer from SHANTI.  She introduced me to another client she had, Larry, a man who lived with his cat almost as in a hole in the wall, squeezed in between two apartments.

Gary Shepard, an actor and filmmaker, who was an Emotional Support Volunteer for SHANTI.

I was later given other names, of people with HIV/AIDS:

Dave Lawson. We had decided to meet outside SHANTI, and as I walked towards him I saw all his KS lesions, and a very friendly smile.  Dave turned out to be a friend of Meredith Miller, but that was something I found out about later.

Daniel Witt, an actor and a teacher from the UK.

Robert Pittman, a playwright. Apart from being a spokesperson for SHANTI, he was also a volunteer for Open Hand, who delivered food to people who were too sick to go out and buy food or cook, or too scared to show themselves.

Robert got me in touch with Ruth Brinker, who started Open Hand in a church, and he also brought me along to the kitchen in the church, to make sandwiches.

At the AIDS Ward 5 A at San Francisco General Hospital, I met a SHANTI counselor, Ron Henderson, who was there to help the patients and their families to cope, for example showing family members that it was o k to touch a person with AIDS. Ron was also a man with HIV.

I had originally gone to SFGH to try to find Alison Moëd, the Head Nurse at the AIDS Ward 5 A, but it was not easy to just show up at the Ward.

While there I ran in to the man from the Swedish church, Sten L.  He brought me to the Chaplain’s Office at the hospital, and introduced me to Chaplain Connie Hartquist and several of the volunteers, among them Laurie D., who became the first person I interviewed in San Francisco. She eventually brought me naturally in to the AIDS Ward.

While still in Sweden I had met an American Catholic priest, Father Thomas Weston, and he turned out to be very helpful.

He introduced me to Peggy Ferro Guinto, a nurse’s aide at Kaiser hospital in San Francisco, where she had worked actively to start the AIDS Ward.

Peggy introduced me to a nun, Sister Mercedes Reygadas who volunteered at the hospital, and to Judi Stone, a museum photographer who had lost her only child, Michael, when he was 19 years old.

Peggy was also the one who told me about the Names project, the AIDS Memorial Quilt, where every Panel, as big as an American grave, carries the name of a person that has died of HIV/AIDS.

Through the Names project, I got in touch with its founder, Cleve Jones, and I met Joy Wallace who worked as a volunteer at Names project.

While visiting the Names project I suddenly saw the AIDS activist and porn star Richard Locke come in through the door,  and I immediately asked if I could interview him, and he said yes.

Back to Alison Moëd, I really wanted to get in touch with her, but I did not know how to do it.  I stood in the doorway of AIDS Ward 5 A, looking in (not daring to enter, because I had no legitimate reason to be there) trying to get a glimpse of her, and after having been introduced to her, I ended up giving her a letter.

I was advised by her to contact the Press office to arrange a meeting, and when that had been taken care of, I found myself at a press conference in the hospital for the President’s Commission on the HIV Epidemic.

As we waited for the press conference to start, I talked to a man who sat beside me, Jeff Shannon, who was there with a journalist from San Francisco Sentinel.  SHANTI had residences for People with AIDS, and Jeff was living in one of them, but had been asked to leave. He refused to leave and he was instead suing SHANTI. (See my previous post about Jeff Shannon.)

Through Jeff  I was later introduced to two AIDS activists, Dan Turner and Leonard Matlovich.  They were at the time active in A Time to Shine, collecting money to help People with AIDS to go to the Second National March on Washington for Lesbian and Gay Rights, in October. (In the post on Jeff Shannon.)

But, back to the press conference.

I noticed a young man who angrily asked questions to the people on the Commission. I walked up to him afterwards, asking him if he was always that angry, and we started talking. His name was Keith Griffith.

We met for lunch the next day, and he Keith who turned out to be HIV positive, brought me to his home, so I could meet his partner, Jay Rindal, who was very sick.

Keith gave me a whole list of names. It was friends, activists, people in the Sex industry, and more.  I called several of them, but only got one answer, and that was from Brad Cochran, ”one of SHANTI`S grief counselors. Has been with them longer than anyone else.”, wrote Keith.

Father Thomas Weston, and a woman in Berkeley had helped me get in to a program in Oakland, The AIDS Project of the East Bay, and there I met new people.

It was a real surprise to see that the former Mormon John Lorenzini, that I had seen in a documentary on AIDS in San Francisco, was there as a teacher.

There were many speakers in the different classes, and I got in touch with two of them, Charles S. and AJ. Williams, and a man who took the same classes as I did, Ted,  and his mother who was visiting from another part of the US. All three men were HIV positive.

I also got to know Bea Roman from SHANTI. She was there to lead us in a Death visualization, to confront our fears surrounding our own death.  I was still upset about my mother’s death, so I didn’t want to do it, but she talked me into it, and it was an interesting experience. We later met at the SHANTI office.

In San Francisco I visited Coming Home Hospice, and went on a booked tour in the former convent. It seemed impossible to get in touch with someone staying there to interview.

But one day I interviewed a social worker at Pacific Presbyterian Medical Center, Roberta Hanus, and as I was about to leave, I saw a man in a wheelchair coming towards her door.

He was wearing a hat, a white negligee, a trench coat, and he was holding a teddy bear.

He introduced himself as Robert D. Osborne, staying at Coming Home Hospice, and yes, I could come and visit and we could talk.

When I came there I also met his partner, Perry S. Wood, and volunteers Iris P. and Joyce Wallace that I had met at Names Project.  She also volunteered at Coming Home Hospice.

I went to Pacific Presbyterian Medical Center because I wanted to visit a man I had met on a course called Care for caregivers, lead by Raymond Jacobs.

His name was  John LoCoco, he was a devout Catholic, active in Most Holy Redeemer Church across the street from Coming Home Hospice.

John and his former partner were both patients at the hospital, but on this occasion John was there as a volunteer. He helped other people on the AIDS Ward.

I was advised to contact several other people. It was almost like people were brought in my way.

Ray D. a man who took me to the AIDS Ward at SFGH to show me how he touched people and gave massage. I became too involved with one of the patients, Matthias, an upset German man, so Ray asked me to leave as it disturbed his work, but I came back several times for the German man.

Jack Pantaleo, a volunteer who played the Harp. He taught me new ways of thinking.

Catherine Maier,  at San Francisco AIDS Foundation. I met several women together with Catherine, also Meredith Miller.

Through Meredith I got to know two men, Jon Cole, that she spoke together with at a conference,  and eventually her roommate, Michael Crisp.

More names will follow, but this is the beginning.

Had I met the twelve people with AIDS, I probably would never have met these people. I am still in touch with several of them, so many years later.

I was on the AIDS Ward 5 A at San Francisco General Hospital, in the middle of an interview with one of the Shanti counselors, when the door to the office suddenly opened and a woman called out:

What? What?! Cancer? That too???!!!

And then she left.  This was in the fall of 1987.

I later learned that her name was Meredith Miller, (actually Eisberg) and that she was one of the few women who through Shanti went public as a Woman with AIDS.

She was a woman I had been told was exhausted, having been interviewed so much that I could not see her.  But our paths were to cross in several ways.

I ran in to her on several occasions, and I heard her speak at a conference. She said she was living proof, that women can get AIDS.

Here she is talking about her situation:

If I tell you I was diagnosed with a terminal illness, the normal reaction is ’Oh, do you need anything? How are you feeling?’ If I say I have AIDS, the first question is ’How did you get it? What have you been doing?’

Nobody cares that I am sick, that I hurt, that I’m tired all the time, that each movement is painful. They hear AIDS, and they have a preconceived idea of my life-style and my morality.

She talked about her children, a boy and a girl, how she had to give them up, so they would not be stigmatized by her being a Woman with AIDS.

There is a lot to tell about Meredith Miller, that I hope to write about later.  But right now I want to post a text I wrote for SHANTI in 1988, after her death.

The reason is that Alison Moëd, former Head nurse at AIDS Ward 5 A, at San Francisco General Hospital, asked me if I knew Meredith. I wrote that I didn´t know her, but that we had met, and that I knew a lot about her, because I had interviewed her friend and roommate, Michael Crisp.

It turns out, that Meredith´s daughter, now a grown woman, had asked Alison for information about her mother. I had wondered what became of Meredith´s children, so I was thrilled, and we are now in contact. Little did I know that my interviews and notes would be helpful to her, 31 years later.

Here is what I wrote about Meredith, printed in a SHANTI Volunteer Memo, in December 1988.

For Meredith Miller

I came to San Francisco from Sweden, in part to see how you were, only to be told that you had died on August 27th. I met you last year when you were giving a speech in Oakland. I had heard so much about you and tried to get an interview but was told that you were very very tired. But there you were, preaching in a loud and harsh voice that women with AIDS like yourself were stigmatized, were called junkies and whores.

And you said, ”Has it ever occurred to any of you that someone with AIDS might actually have loved?”

You told us horror-stories about your former lover´s struggle and death in AIDS, and about your own struggle to survive, and to make sure that your children were provided for. You had had to give them up since you had no chance of taking care of them as they grew older.

You told us that you were preparing one file for each child, with photos and articles and personal notes, to be given to the children when they were old enough to understand, and so they would know who their mother had been.  It was good to hear that Michael, your roommate and friend, had sent those files to your children soon after you died.

You were angry when we met, and I have been told that that was not at all unusual, that you were always angry – since the day she was born – says Michael – and that you fought until the day you died, when you could no longer speak or move by yourself.  I have heard so much about you: that you were badly hurt by life, that you went from one tragedy to another. And once I heard you say that getting AIDS was  just SO typical for your life – if anyone was to get AIDS, it would be you! Of course!

I have been told about your struggle and your pain, about your courage to stand up in front of millions, in front of the world, as a woman with AIDS.

I have been told about how you were trying to keep up the mask, how you held on to your pride and rage, and I have heard about the loyalty and generosity, about your humor ( the laughter and the tears), about your need for silence, and about how you, as death moved closer, more and more rejected the fact that you were actually dying.

Your memorial took place in the Rose Garden in Golden Gate Park, here in San Francisco, where you had found so much support, especially from the gay community.  Dave (Lawson), one of the few people you let near you, said he found it appropriate where the memorial was held because he saw you, symbolically, as a rose with all its thorns poking out.

I was never a friend of yours. We did share cigarettes, but I don´t think I ”passed the test”.  However I am a woman and, even if all your thorns told me to stay away, I DID care about you and I am greatly upset about the silence that surrounds your death. I have a hard time fitting you in among all the numbers of dead people in San Francisco, so many that the population here seems to slowly be getting numbed out.

As I am looking at your face in photographs, I see a face that never tried to flatter me or to beg for mercy, I see a TRUE expression, devoid of all games and manipulations. I see strength and pride and dark dark eyes. I did not see, until Michael showed me, that your face does not ask for my attention but demands it as you were ”living proof!”.  As you started to deteriorate, your features changed and, in some photos, you look like a starving animal.

Michael will soon scatter parts of your white ashes and, according to old Egyptian tradition, break your cups. I hope that you will find peace on the top of Mt. Tamalpais.

I asked your friend Brian Smith why no one had written about you, especially in one of the SHANTI publications, as a ”fallen hero” in the battle against AIDS and he said: ”Can you imagine how many deaths we experience every week?” And then he added ”Merry would have vomited if she was called a hero!”, and he suggested that I write my feelings about you. So here I am, writing about you,  and I hope I have not made you sick. I am from the other side of the world and I hope that you are satisfied to hear that your harsh voice has reached that far.

I asked Brian if I could quote from the letter you sent him, and that he read at your memorial service, and here are parts of it:

”It makes me sad that you want to say good-bye when the time comes. I tell you that all you have to do is think of me, and it will make my star shine a little brighter; I will be laughing, and you know how spontaneous that laughter can be. Do you really think that AIDS can kill my tears and my laughter? Do you think that this love that I carry within can die? My spirit is eternal and flies upon an endless plain. There will be times… an ocean breeze that caresses your face, the scent of a flower, the call of a wild animal and you will hear me, feel me near you and know that I love you. Look for the flight of the hawk, who can watch you from such a great height. I will hear you too and know that I have a friend… forever.

And so, my dearest gentle giant, don´t be sad, if perchance, this existence should be cut short without the formal farewells… it will be a new beginning. Here is a dream for you: When we were in the mountain, lying in the quiet embrace of the granddaddy pines, I thought in my heart that if you could have held me there and I could have let my spirit free, then, surely I would have been in heaven.

A sentimental letter, but save it for when I am no longer in the physical and you will see what I mean…”

The final words of that letter were:  I love you Dear one, with all my heart !!!

She signed the letter with the name: Spoken sky

Here is Michael Crisp, walking in the National AIDS Memorial Grove in San Francisco, where names of people who died of HIV/AIDS are engraved, in ever widening circles.

And now Meredith´s name is there. Placed there by friends.

A PS.

Since I wrote this, even Meredith´s son has found me, and he and his sister are now in contact, after all those years! And a younger sibling also turned up. 

David ”Dave” Lawson, died of AIDS, January 4th, 1989.

Brian Smith, died of AIDS, April 20th, 1991.

As Meredith would say: My Heart!

DS

Living with Bay Area Reporter, BAR.

I started collecting obituaries in BAR in 1987, when I came to San Francisco for the first time. I eventually had a whole stack of them, with hundreds and hundreds of names and photos. In between my visits, a friend of mine that I got to know at BAR, Ann Soucy, sometimes helped me collect obituaries and send them to me.

One must remember that there were people that died that no one wrote about, and, that there were people who did not want to be a BAR- Angel, as someone said to me.

But I have obituaries until the end of 1993. Not all of them, but many. I show them, when I occasionally speak about my work in churches and libraries – to make people understand what it was like in San Francisco, and in other places in the world.

My work with HIV/AIDS has been going on for many years, and during all those, often very lonely years, the obituaries have kept me going.  I have only had to look at the photos, and it all starts again.  As right now, it is in the middle of the night, and I am not tired.

I have wondered what they did in life and what their interests were. How was their death portrayed, who was there when they died, what did their often extended families look like, including cats and dogs, and what charities did they choose?

Obituaries became less poetic over the years,  and just said that the person died, or passed away, or passed away peacefully, often after a valiant battle with AIDS. In 1993 (maybe also before that) BAR changed its policy regarding obituaries:

I thought I would pick out passages from some of the obituaries that were a bit different.  There are so many, but… I begin with a quote by Jean Paul Richter (1763-1825), that was printed in an obituary for

Ralph J. MacNeil Jr. 

”Each departed friend is a magnet that attracts us to the next world.”

Chef Timothy Levens 

Bratsy Patsy packed her bags, kissed her lover of 16 years, Kenyon Marsh, goodbye, slipped from the bondage of this life, and caught an express elevator to the stars.

I wrote this in 2019, and found out, now in 2021, that Timothy Leven´s sister, Theresa Grant had tried to contact me a long time ago. But we found each other and she sent me this Christmas card from Timothy (left) and Kenyon.

William C. Morgan

On the morning of Friday July 21, Will´s free and independent spirit passed quietly into God´s hands.

He was buried in the family plot in Buffalo, Texas ”overlooking rolling hills with trees and open pasture where stallions run free…as free as his soul.”

Gary Lee Brown 

After a long fight with AIDS, Gary Lee passed to a beautiful world full of shining colors with very much love and admiration.

Fred MacKissic 

During the final 22 months of his life, Fred calmly and courageously struggled with AIDS while continuing to help and support those around him. Refusing medication at the last, he died happy and peaceful.

Dennis McCool 

Dennis´ journey here ended as a new door opened for him and he peacefully crossed the threshold. His positive and healthy attitude, mixed with just the right dash of stubbornness, helped him fight strongly against tremendous obstacles presented him by AIDS.

James W. McClure

On February 6 at 6 p.m., as a full moon was rising into a clear winter sky, our dear Jim rose gently into the light.

Joseph Holloway

Early in the morning of July 22, 1993, Joseph Holloway´s life was stolen from him. An insidious plague of homophobia and government inaction stripped him of his dreams and forever ended his tomorrows.

A virus only destroys if it is left unchecked. A decade of presidents not only left the virus unchecked, but fanned a conflagration of ignorance, hate and ineptitude. In 1993 Joseph Holloway did not die from AIDS, he was murdered by it.

Randall James Whittaker

Rand took his leave of this world and flew with his angels early St. Patrick´s Day. He fulfilled his wish to depart through his lover´s arms.

After many years, on August 13, 1998, the front page of BAR said: No Obituaries

This post was posted on February 8th, 2021.

In a few days the film 5B about the first AIDS Ward at San Francisco General Hospital, will open. It has already been shown at the film festival in Cannes.

Alison Moëd, in the film, was one of the first people I interviewed at San Francisco General Hospital, in 1987.

A relative of mine just sent me this article about the AIDS-Ward.

https://www.huffpost.com/entry/5b-aids-documentary-dan-krauss_n_5d024856e4b0985c4198e844?guccounter=1

Please check it  out!

I was hoping I could do this work in a chronological order, but things happen, so I will improvise now and then.

Since I wrote one of my previous post, I got in touch with Richard Locke´s brother, Robert ”Bob” Locke, who is an actor and an author. We had met in 2014, when he told me about Richard and took me to his grave.

When I interviewed Richard in 1987 – and that was a wild interview that I will write about later – he told me that AIDS was behind him… He had become an activist, trying to smuggle medicines from Mexico. He wanted to fight, he wanted to raise hell, and become a Swirling Dervish!

Robert Locke has written an interesting and moving text about his brother, and sent me this photo.

A Biographical Fragment of Robert and Richard Locke.”Robert Locke´s account of his brother Richard Locke´s struggle with AIDS.”:

http://webpages.csus.edu/~boblocke/extext/living.html

.

I had reason to contact Robert Locke some time later, about him self.

During the summer of 1987, some drastic things happened to me.
I received a scholarship, so I could go to the US to interview people with AIDS, and that made me contact several organisations in New York and San Francisco, like People With AIDS Coalition in New York and SHANTI in San Francisco.

My mother died suddenly on June 30th, and although expected since childhood because of her substance abuse, it was shocking when it actually happened, and I was quite out of it for a while. But work has always helped me, so I concentrated on the upcoming journey.

I had, as I have written before, worked in a graveyard in 1986,  so when problems occurred with my mother´s ashes, I didn´t hesitate to pick her up at a crematorium (in a forest – that was unpleasant!) and spread the ashes myself. The wind twisted and turned while I was doing it, so I came away from that experience with ashes actually all over me.

I came to the US with a Letter of Recommendation from RFSL, the gay movement in Sweden, and names of people I had been told to contact.
I had already made contact with Missionaries of Charity that had a hospice in Greenwich Village for people with AIDS, Gift of Love, and Bailey House that helped people with AIDS on low income – they still do. I had also contacted Hale House in Harlem, because I really wanted to meet Mother Hale, who took in babies with AIDS.

Visiting New York turned out to be rather overwhelming. I was not prepared for what was to happen. What I will write about, took place during two or three days.

Meeting Mother Hale, or Clara McBride Hale, was very nice. She was rather old then, born 1905, and she did not say much, but I was happy to have met this good person, who took in more than 1000 children until her health declined. Unwanted children, crack babies, children with HIV/AIDS. When praised, even by President Reagan, she said that she just loved children.
I was shown the day care center, and she told me that they did not test the children for HIV, they just assumed they had the virus, because their parents were either sick or dead.
She introduced me to her daughter, Dr. Lorraine Hale who was a co founder of Hale House, and also worked there. She really surprised me, when I told her about my work, and what I wanted to do, by asking, as in disbelief: Do you touch them?!
To this day I wonder, if it was so dangerous, how could she let her mother do the work she did?

There is a lot to tell about Dr Hale and what happened after the death of Mother Hale in 1992, but this is not the place. One can Google about it. 

I had been in contact with Mother Superior at Gift of Love, and I was invited to visit, but when I came there I was stopped just inside the door, by a very angry nun, Sister S. Who was I?! What did I want?!
Mother Superior was out of town, and I could not prove we had been in contact, so I just had to leave.

Sal Licata, a well known AIDS activist in New York who helped me a lot, told me about Gift of Love. He said it was actually an alternative prison for people with AIDS. They lived and died there.

A more positive visit was at the office of People With AIDS Coalition.

They had a little house in a garden, and I spent some hours there, helping out by folding papers and putting them into envelopes, and then I watched a makeup artist teach a man with AIDS how to cover the Kaposis Sarcoma lesions on this face.

I was invited to visit a hospital in the Bronx, The Albert Einstein Medical Center, where they treated children with AIDS. The nurse that had invited me was very serious when I came. I had to leave all my belongings in her locker, and she searched me, to make sure I did not bring a camera with me.

I was to meet a child with AIDS, and she brought me in to a rather dark room, where a little black boy sat alone in a crib. I do not know if that was where he slept, or if he was placed there for me to see him.
The suspicion that I had a camera stashed away somewhere on me, was palpable, but I had no camera with me.

For my inner eye I still see this little boy, alone in the crib, reaching up, wanting to have contact. 
I don´t remember if I touched him, I really hope I did, but I know she held him.  It was the saddest moment.

The nurse told me that the children in the ward had never lived anywhere else. One good thing had happened, and that was that they had been given a van, so they could take the children out on trips.

My final meeting in New York, was at Bailey House in Greenwich Village. I was told that they took in people with AIDS on low income.

I had booked a meeting with a man called Dave.
I introduced my self and my idea and asked if he could help me meet someone with AIDS, to interview. But, his reaction to what I said was dramatic.
No, he told me. Nothing I said was true. He angrily told me that I was a user, and that he would not be better than a pimp, if he helped me. Trying to reason with him, was impossible.

I somehow managed to get out of that office, in tears, and after all this, I knew I would not be able to do any work in New York.

But why did all this happen?

Sal Licata told me that the press had been trying aggressively to get glimpses of people with AIDS, even children with AIDS. People Magazine had lured a woman with AIDS, at Bailey House, and had taken photos of her in the bath etc. And there had probably been other things happening.

I left for San Francisco, thinking it might be different there. And it was, like night and day.

Before I left for the US, I had seen two documentaries about AIDS in San Francisco. I had especially noticed three people that I hoped to meet: It was the former Mormon, John Lorenzini, the Head nurse at the AIDS Ward Alison Moëd, and the porn star Richard Locke who created parties at the AIDS Ward together with a woman called Rita Rockett.

And I did. I met them.

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 moment, 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 Ek and Calle Andersson, a couple. Very nice people, and a great support. (The less organized Panel is mine, and it includes both Swedish and American names. )

Tommy, who stands alone, became very depressed at times, and he was saved from several suicide attempts. He was really very depressed, also losing his sight so he could not paint, but suddenly he had a desperate burst of hope, because of DNCB; A chemical used in the development of color photographs, that for a while was thought to stop HIV if  you painted it on your body. A Swedish man with HIV, Mats Ernmark, living in San Francisco, came to Sweden to promote it, and he was very convincing.

The idea was that this easy way to cure HIV had been silenced by the big Pharmaceutical companies, because it was so cheap and they would lose money. 

I think hope made it work for a while, but in the end both Mats and Tommy passed away, both in 1994.

Calle was later struck with a number of diseases; expressive aphasia, brain damage and paralysis on one side. He only saw two colors, 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, in 1995.

Something extra about Calle. He wanted to bring a bottle of whisky with him in the coffin, but as he was to be cremated it did not work. However, the undertaker that I have mentioned in another piece, was now totally relieved of all ”it is not possible”, and poured out whisky in the coffin.

But back to the Panel making:

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, in 1992.

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.

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 Grandchild-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 to 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

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.