Talking to Laurie D.

 

Because of Sam…

Laurie D. gave me the first interview in San Francisco, 1987.

We went out on a terrace at the San Francisco General Hospital, it was towards the end of lunchtime, so it was peaceful around us.

Laurie smiled, a lot. She seemed to belong to an almost extinct kind of women, sort of old school with braids.

Laurie was a Lay assistant Chaplain, at the Episcopal Chaplain´s Office, trained by Connie Hartquist.

  • I am here because my friend Sam died of Aids, and I wanted to do something. I couldn´t do something for Sam after he died, but there was still a lot of grief that I needed to be doing something with.

Laurie lived on the other side of the bridge, in the East Bay, and said that it was such a difference, as if AIDS didn´t exist, other than as something to laugh about.

She mentioned the actor Rock Hudson, who was the first famous person in the US who came out as having AIDS, which made it real to people.

  • I think that says something about United States, that it took a movie star to do that. You know that´s really pathetic in a way, yet, Thank God for Rock Hudson!

She said that people loved him.

  • Whatever that kind of love was, people loved Rock Hudson! And so I really think that turned the tide here in the country.

Laurie worked as an editor at the University of Berkeley, and volunteered at SFGH one day a week.

She said that she always wanted to be out there doing good, but had realised that she was best suited to work with words. But when Sam died, she decided to get involved this way, and she thought it was good for her, because it gave her a balance in life.

So who was Sam?

He was a man she had worked with. His partner Alex had already died of AIDS.

  • Pretty much the whole time I knew Sam, he was grieving for Alex, and he even wanted to die. But when he contracted AIDS, he no longer wanted to die, he wanted to be alive

I was able to be with Sam in his illness, and that was a really profound experience for me to… You know, one of the few things I could do for Sam was to rub his back. He felt bad all the time, sometimes intensely bad, nauseated and awful, but sometimes just low key bad, and he couldn´t eat. I couldn´t make delicious little dishes for him. It just made him feel worse. But rubbing his back made him feel better, and that´s the case with a lot of AIDS patients.

Laurie talked about back rubs and foot rubs, as helpful for AIDS patients.

  • Foot rubs are particularly good in the case of AIDS patients, because sometimes every other part of the body is in too much pain to be touched.

We talked about pain. She said that AIDS is unspeakably painful.

  • It´s not AIDS per se, it is different things that people with AIDS have. I know the last stages of Kaposis Sarcoma can be just the most painful thing in the world, and there is nothing but morphine. You know there´s no inherent value in pain. Often people have profound growing experiences from being in pain, either spiritually and/or physical pain. I think alleviation of pain is/should be, a very high priority for the medical and hospice community too.

There were not always volunteers available, and the chaplains were very busy as they served the whole hospital. Laurie mentioned that there was a lot of burnout, when working with AIDS patients.

  • How much of your work is spiritual?

Laurie laughed a little and said that she thought everything was spiritual. It could be giving a foot rub and not saying anything.

She said that even when people say no, when she introduces her self and offers them a back rub or a talk, is spiritual.

  • And I go OK. Take care, and I walk out – I think that´s a really good spiritual things, to let people know, that to be connected with God doesn´t mean your gonna step on them, or insist on what you want.
  • Do you go from room to room every time?
  • I stop in and see the SHANTI workers, and say: Do you have any referrals for me? and they go: Go see so-and-so, he is really down. Go see so-and-so, he tried to kill him self last week. DON`t go and see so-and-so, he´s just burned out with people. You MIGHT want to go see so- and-so. His mother is here, his mother is really freaking out, I think the mother needs to see you more than he does. Or… So-and-so could really use some massage, but I don´t know if he feels comfortable about it, you could just try.

Laurie said that the cooperation with SHANTI worked well.

  • It´s been an in for me that I do massage, but I think the truth is, that the people who get referred as needing to see a masseuse, are the people who need to see a chaplain too.

Sometimes the people at SHANTI will say: This person could really use some masssage, or they could use comfort at any level. And I always take my cues from the person, him or herself. If they want to talk, I´m there to listen.

One thing that´s impressed me is that patients really DO give a lot – they give clues.  If they don´t want to talk, they don´t talk. They want you to go away, they say: Well, thank you for coming. So it´s not hard to read what the patients want from you.

  • What about different religions?
  • Well, people are often… both Christians, and people that aren´t Christians, whether that´s Jews or Buddhists or Nondenominational, they have a lot of reservations about Christianity, and I understand that. I´ve certainly met more than my share of Christians that I wouldn´t want to have anything to do with, and I´ve certainly been burned by the established church, and I think anyone on the AIDS Ward, by definition, has been given a bad deal by the church, just in terms of what Big Name Preachers have told them.
  • How do you mean?
  • Oh… Jerry Falwell and others saying that AIDS was just as much as they deserved. He is a TV-evangelist. It is nothing weird, it is something very fundamental and well established.

I told Laurie that I had heard the day before that some people thought they were the people of God, so they would never get AIDS.

  • See, that´s more of They have nothing to do with me. I would never get AIDS. No one I loved would ever get AIDS. No one I have ever seen will ever get AIDS. And it is just a lie! It is just a lie. But that´s how human beings work. If you have never loved someone with AIDS, maybe it just doesn´t touch you. But, you know, the thing is that they probably DO love someone with AIDS or a gay person that is not in the position to be able to admit it, or have it admitted to them.

I wondered what church Laurie went to.

  • At this point I don´t go to church. In a sense the chaplaincy is my church, because… I have been too hurt by the church, and I can hardly stand to walk in a church right now.
  • Before this, or during this?
  • Oh, before this, and certainly the AIDS-crisis has been part of my disappointment with the established church.

Laurie had a background with The Plymouth Brethren.[1]

  • They pay a lot of attention to the Bible, and they don´t believe in clergy, so in a sense I still share some theological perspectives with them. Like you say: Where do you go to church? But my view is that I am the church, the other chaplains are the church, the patients are the church, so…
  • Do you hear a lot of doubts about God, and disappointment about what has happened to their lives?
  • Well, you´d be thinking so, but more than that, I hear: God is punishing me and I deserve it. I always try to suggest that that´s not the case, that it is not a punishment, that God isn´t getting any satisfaction out of their suffering.

It´s not so much that I tell people, it´s that I try to hear them out to what they are thinking and feeling, and then to suggest other ideas. Maybe they can see it in a different way, you know, that God doesn´t hate them, that God is not mean, that God in fact loves them and is really sad and sorry that they´re in pain.

  • Don´t they ask why he doesn´t do anything to relieve them?
  • Yeah, and there is sort of no answer to that. It´s real clear to me that I don´t have answers in that respect.

I asked if Laurie could tell me about some people she remembered

  • Well, a man named Alex, touched me very deeply. I came to his room, and he had just been admitted. He had a Mohawk haircut, you know, with a streak of chartreuse in it. I asked him if he would like massage, and I massaged him and he just talked nonstop for hours. And every now and then when we would be talking, he would say: You know, I don´t usually talk to people like this, or, You know, I´m not a nice person! I don t talk like this. And he talked a lot about his past, about what he wanted to do, and at one point I said – and I am kind of shocked when I think that I said it – I said Are your parents alcoholics? And his eyes got wide and he said: How did you know?, and I said: Mine were too, and you sound just like me in some ways.

Laurie visited him again a few days later, and told him that it had been profoundly comforting for her to be with him, and he said that it had been that for him too.

  • One thing I really remember, was that he asked me something that AIDS patients will often say: Why are you here? What are you doing here?, and I said it, and it sounded strange to me, because I hadn´t said that many times. I said: My friend Sam died, and he said I´m sorry.

And you know, to have someone say, really caringly, I´m sorry, is a really profoundly healing comforting thing, and I mean… That´s not at all rare that I come away felling much like… Wow! If they are half as ministered to, as I am, they are really lucky, you know.

I often thank patients, and often patients will be really surprised, like… Oh, did I give something?

And I think that is really good for someone who is sick and in pain and anxious and locked up in a hospital, stuck in a hospital. It is so terrible to be sick, and then it is even worse when you are in a hospital and people are going in and out of your room and they are doing things to you and they are hurting you, and you don´t know if they are telling you the truth.

And maybe your friends are not taking care of you as much as you wish they would, and there´s just so much happening and you feel really helpless – To be able to give someone something is probably really helpful for a patient.    I mean, it´s like you lose the line between giving and receiving.

 

Laurie mentioned another man, Ron, that she had talked to. She said she could tell that he was trying to figure out if she was going to hit him with the Bible, or lay down the Law. But he slowly relaxed in her company.

  • After a while I left, and then a nurse came and got me in the hall and said: The doctors have just been talking to Ron, and have told him what his condition is, and he has chosen not to be given any extra life support measures.

The nurse had asked him if he wanted to see a chaplain, and when he heard that Laurie was on the Ward he had said: Oh, the one with the braids? She´s cool, send her in.

  • And I went in, and we just… We talked about his death, cause that was what was at issue right then. I asked him what he wanted to do before he died, and we talked about that.

Ron stayed at the Ward for a long time, and then he was transferred to another hospital for AIDS patients for long term care, Garden Sullivan.

  • I said, I´ll think about you, and he cried and said: That really matters to me, you know, I don´t want to be forgotten. And I think that does matter a lot when you are thinking about your own death.

 

I wondered if Laurie saw much of parents, lovers or friends of the patients, but she didn´t.

  • Privacy is so important to me personally, that it is very hard for me to walk in when someone is with friends. But also, I´ve been with patients who really wanted me to come, to be a buffer between them and their parents.

You know, sometimes a parent will disown a child who has come down with AIDS, and sometimes a parent will come, and won´t go away. And even if the AIDS patient is really grateful for his mom to be there, sometimes it´s just… It can be too much to have a parent there day and night.

And AIDS patients… I mean my experience with AIDS patients has been that they are super conscious of the trouble that they are putting their parents through, and their lovers. That´s one of the hardest things, is that they are feeling bad about what they are putting their loved ones through.

I remember my friend Sam saying, in a moment of terrible grief: You know, I feel like I´ve ruined my parents lives. And I don´t think he did. For one thing, he went home to die, to help them get through his death.

But I see that with a lot of AIDS patients, tremendous concern for the people they are leaving behind. A lot of patients have been left behind by their lovers, so they know how hard it is, and often they do a lot to help whoever is left behind.

I wondered if Laurie had ever been scared of being infected with the virus, and she said no, but told me about one time when she had given massage to several people, and then she scratched one of her eyes and got an infection. Since then she wears disposable gloves.

  • I think when a patient has fungus, I will wear gloves. And it´s hard cause you don´t want to hurt anyone´s feelings. But it´s not that AIDS is communicable, it is that AIDS patients gets things, from chickenpox to herpes to fungus, that healthcare workers DO need to be careful about.

I wondered what this has meant to Laurie, to her thoughts about her own death.

  • Well, I guess I go ahead and be frank. I´ve never worried about my own death. In fact I´ve spent probably most of my life thinking it might be nice to be dead, and I never more wanted to be alive, then now

It´s not so much that being with AIDS patients has helped me prepare for my own death, but it is really helping me cope with pain in my life, and I mean in a way – this sounds corny, but there is just so much… I see so much forgiveness, and so much… compassion, and so much… let me think about the word… so much gracious acceptance of really terrible, terrible things, that it´s… I don´t know if you´d say… it´s inspiring, or it´s instructive, but it´s really helpful to me.

Laurie spoke about patients being abandoned by family and friends, on top of them being sick and in pain and facing death.

  • One way or another, people get left alone, and that´s terribly painful, and you know, I see anger and hurt and bitterness, but I also see tremendous graciousness and acceptance.

I wondered why Laurie had chosen to be an Assistant chaplain, and not chose to volunteer for SHANTI.

  • Well, I am a Christian, even though a lot of Christians, like Jerry Falwell, probably wouldn´t think I am. SHANTI is sort of… Well, they care about spiritual dimensions, but they are not specifically Christians, and I am. I sort of know the name of my God, if you so will, so that´s one of the main differences.
  • Have you lost many patients?
  • Well, once someone is diagnosed with AIDS, they´ll be in the hospital two, three, four times. People will more often be discharged than die, but I have lost patients. I know what it is to come in and to open the Notebook, and to think: Did he die? Did he die? Oh!… He is ok. And also to not even be expecting it and come in and have someone say: John died, and just think: God damn it! But you know, sometimes you go: Oh… that´s a relief. You know, some deaths are like that.

I was with a man, I guess it was my only real deathbed-experience. They had expected him to die anytime, for days. His mom was there, and she was standing near him, stroking his head, and just saying: Let go Honey, it´s ok, just let go. I´ll be ok, and you´ll be ok, but just let go

And I was there for a long time, just stroking his hand, talking to him, but he… Who knows, people have their own reasons for holding on, and sometimes only they know…

  • Did you lose him?
  • Yeah, he went. You know, at this point of the AIDS-epidemic there are a lot of deaths, cause the people are coming in for the fifth or sixth time in the hospital, and the disease is really far advanced. There are a lot of deaths, a lot of dementia, and when dementia comes, you know, death… is really a relief.
  • What is dementia?
  • The brain goes, you know, the body functions, and when someone is that far gone, death is a relief to everyone.

Before I interviewed Laurie, I found out that she was just about to get married, and I wondered what he thought about her volunteering at the AIDS Ward.

  • I think it was the first night I met him. I said: You know, I work with AIDS patients, and I touch them, a lot! What do you think about that? If that threatens you I don´t want anything to do with you, and you might as well go right now. That´s really funny that I did that, looking back on it. But he thought it was great.

Laurie said he was really supportive and prepared to listen to all she had to say, because she really needed to share things with him when she came home, including really gruesome horrible stuff that no one else in the world wants to hear about.

  • And he´s willing to… you know, go with me, so… He´s a good man.

I thanked Laurie for talking to me, and then we went to the AIDS Ward. She washed her hands when she came there and she washed them when she left – a ritual I soon adopted – and then she showed me around the Ward.

The Nurses station was in the middle of the Ward, and around it all the rooms.  At the back of the Ward was the Elizabeth Taylor Lounge, where the patients had their own kitchen, sofas, a large television screen, a piano, fruit, candy and a lot of flowers.

Laurie introduced me to Alison Moëd, I finally got to say hello to her!, and to Ed Wolf, a counselor from SHANTI.

Ed Wolf told me that he often gave Laurie difficult challenges, and that she could handle them. This day he had a very special challenge for her: A young AIDS patient had just been told that his mother had passed away in New York. He needed someone to talk to and Ed thought that Laurie was the right person to talk to him.

So we said goodbye, and Laurie promised to send me an article that she had written about her work at SFGH. I will return to that later.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] An evangelical Christian movement, that started in Ireland 1929.

The Trust Me Baby-days are over!

A couple of weeks ago 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 ACTUALLY GOT BACK TO ME, just as I had published this, so the information landed! It did not disappear. I am happy about that.

But here goes:

John was SUCH a good speaker –  I still remember, not going back to notes or anything – 32 years later.
He was fast, charismatic, funny, “The Trust Me Baby-days are over!”, he would say, when talking about sex. 
And he was considerate.
I took classes for him in Oakland, at the East Bay AIDS Project, and all of us who were there, be it PWA:s, prison staff, people in the sex industry, volunteers, everyone were told to learn about sexual activities and words. Much unknown to some of us. 
It could be the C word, F-word, etc. but that was just peanuts, they taught us all sorts of words, and the meaning of them, Beaver ( I forgot what that was), Fisting, Golden showers, you name it. And we were supposed to say the words out loud.
I remember the turn came to an older black woman, and you could tell she was struggling, and John came to her rescue, smiling friendly at her and letting her pass. He was such a friendly soul. 
I think he and the others really enjoyed them self, as they talked about men refusing to wear condoms, because they were TOO BIG. They did so, as they were putting on condoms slowly on their forearm, without them breaking, until they reached the elbows.  
John also talked about fear, and AIDS. And he said that the largest sexual organ, is the brain. 
It was hard to believe that he was sick, he was like one of those batteries. SUCH energy!
I wish you had had a chance to meet him.
I´ll write more about John Lorenzini later.

 

 

 

The People I met at SHANTI, Coming Home Hospice, San Francisco General Hospital…

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 two SHANTI counselors, who were there to help the patients and their families to cope, showing family members that it was ok to touch a person with AIDS.

They were Ron Henderson, who was also a man with HIV, and Ed Wolf, now well known from the film We were here and what he is writing about this time.

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 leaving 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 angrily asking 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.

Remembering Meredith…

I was on the AIDS Ward 5 A at San Francisco General Hospital, in the middle of an interview with Ed Wolf, 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, and that she was one of the few women who through SHANTI went public as a Woman with AIDS.

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.

Hey, nobody told me about AIDS! What is my crime? That I loved somebody too much?” — by Meredith Miller, a mother of two, who died of AIDS in August 27, 1988. Meredith was 33 years old.

🎥 CBS News Special: AIDS Hits Home (1986)
📖 Fee, Elizabeth, and Daniel M. Fox, editors
AIDS: The Making of a Chronic Disease. Berkeley: University of California Press, c1992.

https://instagram.com/p/B4f_HUOFWrm/“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.Hey, nobody told me about AIDS! What is my crime? That I loved somebody too much?" — by Meredith Miller, a mother of two, who died of AIDS in August 27, 1988. Meredith was 33 years old.🎥 CBS News Special: AIDS Hits Home (1986)📖 Fee, Elizabeth, and Daniel M. Fox, editorsAIDS: The Making of a Chronic Disease. Berkeley: University of California Press, c1992.#whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids

Slået op af The AIDS Memorial i Tirsdag den 5. november 2019

 

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, the former Head nurse at the AIDS Ward 5 A, 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.  (I mention photos in the text, one of them is the photo at the top of this text.)

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 off 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.

I know that Meredith´s name is there now. Friends of hers added it.

A PS.

Since I wrote this, Meredith´s son has found me, and he and his sister are now in contact, after all those years!

As Meredith would say: My Heart!

DS

 

Living with Bay Area Reporter

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.

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.

On August 13, 1998, the front page of BAR said: No Obituaries

The first AIDS Ward and more…

I have just moved house to be close to my little grandchild, so I have not written anything. But I will.

Before I do – 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 it:

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

I hope you can open it.

Tomorrow I am off to Gothenburg, to speak in a church on Sunday. Pride finishes in Gothenburg tomorrow, Saturday.

I will speak about my book, and the work I have done, but I will also talk about a similar service that took place in Stockholm, in 1990, in Storkyrkan.

Pride in Stockholm always ends in that church, with a service called Kärlekens Mässa / A service of Love, with communion and all. The church is usually packed with people.

Before the service, we who were to participate, gathered in the vestry.  While there we were told that a gay man had been stabbed to death in Gothenburg. It gave the service a new and very serious and chilling dimension.

It turned out that this man had been provoked by two men outside a gay club, and he didn´t back off, but went after them and that sealed his fate. He was cornered, and then stabbed, 40 or 50 times.

Both men turned out to be very young, 19 and 22, and Neo-Nazi´s.  They went to jail for this, but not for long. One of them has killed another gay man since. He thinks it is his right. If he is alive, he must be 55 years old or so, these days.

During the trial, one of the older female Nazis was there to support the young men. She was interviewed about it, and she said: We don´t see Homosexuals as people. We regard this as cleansing!

My part in the service was to read, and I read a poem called  Death is nothing at all,  and I finished by mentioning all the men I had known, or known of, that had passed away in hiv/aids. They were so many that I forgot some of them.

Death is nothing at all

I have only slipped away into the next room

I am I and you are you

Whatever we were to each other

That we are still

Call me by my own familiar name

Speak to me in the easy way you always used

Put no difference into your tone

Wear no forced air of solemnity or sorrow

Laugh as we always laughed

At the little jokes we always enjoyed together

Play, smile, think of me, pray for me

Let my name be ever the household word that it always was

Let it be spoken without effort

Without the ghost of a shadow in it

Life means all that it ever was

There is absolute unbroken continuity

What is death but a negligible accident?

Why should I be out of mind

Because I am out of sight?

I am waiting for you for an interval

Somewhere very near

Just around the corner

All is well.

Henry Scott Holland (1847-1918),

 

 

 

 

Richard Locke – A Swirling Dervish! A Whirling Dervish!

Richard Locke – A Swirling Dervish!
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 my previous post, I got in touch with Richard Locke´s brother, Robert Locke, who is an actor and an author.
We met in 2014, and he told me about Richard, and took me to his grave.

I asked Robert to correct me if something was wrong, and he pointed out that it is called Whirling Dervish, but he wrote: “But I rather prefer “Swirling Dervish” because that is so like what Richard might have said.”, so I don´t change it.

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:

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

.

Not better than a pimp…

Not better than a pimp…

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. My mother was a journalist, so I pretended that we now worked together, and I constantly talked to her.

I 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 creepy!) 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 that 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 she could 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 in Greenwich Village, and I was invited to visit, but when I came there I was stopped just inside the door, by a very angry nun. 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 told me about Gift of Love. He said it was actually an alternative prison for people with AIDS. They lived and died there.

I should write something about the people I write about. So many of them have died, and I would forever be writing the late Sal Licata, the late … so I have decided not do that, their passing will come up eventually.

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 didn´t.

It is only for my inner eye, that I still see this little boy, alone in the crib.
I don´t remember if I touched him, I really hope I did, I just remember him standing up in the crib, wanting to have contact. 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, and I better be on my way. 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?
The press had been trying aggressively to get glimpses of people with AIDS, even children with AIDS.
Sal Licata told me that People Magazine had lured a woman with AIDS, at Bailey House, and had taken photos of her in the bath etcetera. And there had probably been other things happening.

But this was the final straw for me, and I left for San Francisco, thinking it might be different there.

Before I left for the US, I had seen two documentaries about AIDS in San Francisco. I had specifically noticed three people that I hoped to meet:
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 did not know what to do…

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 while, 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 and Calle, a couple. Very nice people, a great support.

Tommy, who stands alone, became very depressed at times, and he was saved from several suicide attempts. He became blind, and died in hospital, after a sudden desperate burst of hope, because of DNCB. (The chemical used in the development of colour photographs, that for a while was thought to stop HIV if  you painted it on your body. A Swedish man with HIV, living in San Francisco, came to Sweden to promote it, and he was very convincing, but it did not work, and he passed away.)

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

Calle had specific wishes for his coffin. He wanted to rest on silk sheets, he wanted to be dressed in jeans and a flannel shirt, and he wanted to bring a bottle of whisky, in the coffin.

At this time, in these circles, with so many funerals, I think especially the caretaker Krister Pettersson, that I have mentioned before, let go of a lot of rules, so on this occasion, since the bottle could not go in to the Crematorium, Krister and the nurse poured  whisky all around Calle in the coffin.

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.

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.

 

 

 

 

 

 

 

Some words, while I recover…

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 Granchild-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 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