When I arrived in San Francisco…
I went to SHANTI as soon as I could. I had been in touch with a woman there, M. , 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 there – she had suddenly quit, and she had not passed my name on to anyone, so I had to start all over again.
On the phone, M. had told me to not get stuck in my original idea, but I did not want to listen to that, at the time, but it turned out to be a very good advice, especially in combination with that she was not there, which forced me out in the wild, so to speak.
It was such a difference to Sweden, where everything was so 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 realise that he or she knew every patient on that Ward, and didn´t know where to start.
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.
The Emotional Support Volunteer would be there for a certain amount of time per week, to help the client.
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.
He said he had 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. Sten L. later turned out to be a good help at San Francisco General Hospital, SFGH.
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. If I remember it correctly it was Paul Stern who helped me. And later Chris Sandoval. I met him in connection with an AIDS conference in Sweden, some years later, and he kindly updated me on how people were.
The first names were Keith and Gery. They had been together for a very long time, and had decided that if one of them died, the other one would follow.
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 teacher from the UK.
Robert Pittman, a playright. 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, who was there to help the patients and their families to cope, showing family members that it was ok to touch a person with AIDS.
His name was Ron Henderson, who 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 trough the door, and I immediately asked if I could interview him, and he said yes. I have already written about him in this blog. Richard Locke – The Swirling Dervish, A Whirling Dervish, but not about the interview.
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 adviced by her to contact the Press office to arrange a meeting, and when that had been taken care of, I found my self 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 different houses 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.
Through Jeff Shannon 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.
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 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 a SHANTI volunteer, Brad Cochran.
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.
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 in to 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 wheel chair coming towards her door.
He was wearing a hat, a white negligee, a trench coat, and he was holding a teddy bear.
He introduced him self 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 volunteered even 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.
The Pope was coming to San Francisco, and John had been chosen to meet the Pope, as a Person with AIDS, together with a group of people from the church.
John and his 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 adviced to contact several other people.
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, 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, a women´s specialist 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.