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.