To really be a witness

My notes continue. I have many through the years, but I want to pick out some that you may find interesting.

It was Peggy Ferro, who told me to come with her to a workshop, ”Care for Caregivers”, lead by Raymond Jacobs from Gay Men’s Health Crisis in New York.

I talked to him, and he said I could take part as an observer.

I have written about this before, when I have written about John LoCoco, but I will mention him again and only a few of the things that we did.

We sat in circles, and Raymond Jacobs asked us to think 5 years ahead, Realistically.

John LoCoco said that he would probably not be here, but that he was hoping for compassion and empathy.

Several of the others had the same thoughts, that they wouldn’t be there.

The next assignment was to think about the relationship to the to AIDS patient.

”There are assholes. They were assholes before, and they will continue to be assholes. But you must find a way to deal with your patient. Always.”

”But how do you do it, when they are so difficult?”

”Be true. Try to find similarities. ”

He talked about love, tolerance and patience, and then he asked about emotions.

”What emotion stands in the way of your work? ”

Fear, was the emotion that was mentioned the most. Having lost a whole  generation of men that were free and full of love, as one man said.

Fear of being inadequate, fear of loving the patients too much, fear of getting too involved, and of suffering.  Fear of having colleagues with AIDS.

Guilt was another word – guilt, when one takes care of oneself.

Later he wanted us to talk about good feelings.

John LoCoco mentioned that he was going to speak to Pope John Paul II, the next day. John was one of the people with AIDS that had been chosen to meet the Pope, and he had a real desire to connect with the Pope. He wanted to tell the him to be ”more Christ like”, and he actually did.

In the last exercise we were asked to imagine a person in in front of us, and we were to tell that person why we volunteer or work with AIDS.

”Your payback, for doing this. What is it?”

I don’t remember who I looked at, but for me the payback was working like this, meeting people, writing and traveling.

This workshop was filmed, but I don’t know who did the filming, but as I looked for it, I found a lot of interesting material -also interviews and programs with Raymond Jacobs and others, at  The New York Public Library, ” AIDS Activist Videotape Collection, 1985-2000 – NYPL Archives”. They say there were films also made in LA and SF for example – but I do not know where.

I met Raymond Jakobs one more time – in Stockholm, probably in connection with the 4th International AIDS Conference in Stockholm, 1988.

He was leading a workshop with volunteers, at Noaks Ark. I think one can say it is equivalent to Gay Men’s Health Crisis,  and I took part as a volunteer this time.

As I mentioned in my previous post, the model Sighsten Herrgård had come out as being  ”a person with AIDS”. He had many friends, and among them royalty, our present King´s sister,  Princess Christina.

They had both talked at an AIDS gala on television, and after that many people had contacted Noaks Ark, wanting to be volunteers. And some of them took part in this training.

When we came to the part when we talked about why we do it and payback, something happened.

Two older women told us they had volunteered because they wanted to save the homosexual men and help them when they died, and there was talk about Jesus.

Raymond Jacobs immediately told them off, and both of them were asked to leave Noaks Ark. It was quite emotional, and dramatic.

Raymond Jacob died in 1983, he was 45 years old.

 

 

 

Dear Friends,
Notes from September 15, 1987, with additional notes from the present.

I had met a man at Amelia’s the day before, and he had advised me to contact a woman called Joy Wallace at the NAMES Project.

She was not there that day, but I sat very content in a corner, cutting out names for three Panels, three men that had died in Sweden.

I needed the last name on one of them, ROAR; and I tried to call his former partner, Sighsten Herrgård in Sweden.

Here is Roar, the first man to get an AIDS Diagnosis in Sweden.

Sighsten Herrgård was a well known model and dress designer who had recently been forced to come out as having AIDS. Someone at the hospital had told a journalist that he was a patient at the AIDS ward, and that journalist threatened him, I guess demanding a scoop – but Sighsten wouldn’t have any of it, so instead he called for a press conference together with the doctors. He was the first famous person in Sweden who talked about it. Unfortunately I could not reach him at the time.

He passed away in 1989, but I know he managed to see the Quilt, or parts of it, probably at the 4th International AIDS Conference in Stockholm. He was very moved by that Roars name was there.

Some time after his death, we were four women who made a Panel for Sighsten.

 

Richard Locke, the porn star and AIDS activist had walked in through the door at the NAMES project, and had said yes when I asked if I could interview him.

However, I did not know how to reach him, so I went to bar where I was told he worked at times. One walked in through heavy black or dark brown leather curtains.

I did not remember the name, but through the helpful people at the AIDS Memorial, and Rita Rockett who knew Richard, I now know it was Castro Station.  I probably came in to a kind of reception.

I did not know if it was place only for men, but I felt oddly out of place, and just left a note with my number for Richard.

( And when we met some time later, it was quite a whirlwind experience! I don’t think anything could have prepared me for that interview! )

But for now I sat with my Panels for ROAR, for MATTI, the first AIDS patient with KS that I met when I worked as an orderly at the AIDS Ward at one of the hospitals in Stockholm, and for PETER C., the first man I knew that had died of AIDS.

Peter C. was a textile designer that had lived in New York for a long time, but had returned to Sweden. I remember he held a party when he came back home, and I was asked to come along by a friend of his. We had never met before, and we never met again, but he suddenly stopped, and locked eyes with me. I never knew why.

I worked at a graveyard in the summer of 1986 – just to be outside for a change – and I was asked to carry a box with ashes to the chapel, when I suddenly saw whose ashes I was carrying, Peter´s.

The ashes were to be placed in the Chapel until the ordinary staff came back from their holidays,and could take care of them, but I knew Peter had to be buried  fast. His partner was very sick, and I wanted him to know that Peter was buried. So I took Peter to the boss and explained the situation, and we buried his ashes early next morning.

MATTI, the young Finnish man who was covered in KS, to my joy his Panel ended up on the NAMES Project poster for 1987. You can see in the middle on the left hand side. I think my old poster is losing some colour.

 

I was forever trying to get ahold of Cleve Jones – but he was so busy! It took some time!

I was staying with two nice women in Berkeley, and when I called them they said that Irene Smith – that I had previously interviewed – had called and said that Elisabeth Kübler Ross wanted me to read the script to her book about AIDS, before I came to her workshop in New England. I could pick it up at Irene´s place.

So much to do! Nice!

If you scroll down here in my blog you’ll find stories about Irene Smith and others and about Richard – not the interview though – it’s coming.

And, you will find his brother, Robert ”Bob” Locke. Actor, author, teacher. I had asked him to take me to Richard´s grave.

Richard’s grave is to the left, then it is their parents, and a sister.

Bob was for some reason testing me – I have realised that I was a rather innocent woman before I came to SF, even though I have ”been around” – but I had met his brother, so I was prepared! Almost.

I don’t know if Bob was waiting for reactions, when he told me that they had had sex when they were young, he and Richard… I remember saying Oh!, or when he showed me a box with Richard’s things and suddenly showed me a close up of Richard’s penis. ( I think. ) It was like he was checking me. But what could I say? Maybe Oh! again

I think I passed the test, because we stayed in touch for years, and he sent me his books. AND – he let me print what he had written about the last days of Richard.  You’ll find it if you scroll down to the first piece about Richard Locke.

Something happened later, you’ll find it in the piece called: ”What can I say? I’m BOB!”, that would really upset me, for days.

But this was September 15, 1987.

 

 

 

 

Dear Friends,

in the beginning of my time in San Francisco, in 1987, I was introduced to an nursing assistant at Kaiser Hospital, Peggy Ferro Guinto. 

Peggy was active in the Union, and she had worked hard for there to be an AIDS Ward at the hospital, and she had succeeded.

She told me she worked with HIV protection at the workplace, syringes for example.

It was Father Thomas Weston who took me to meet with Peggy, and he also introduced me to The AIDS Project in the East Bay, where he had been active.

I had heard about the NAMES Project, a big Quilt they were trying to do with names of people that had died of AIDS, and I had been told I just HAD to go there. When I came to see Peggy she told me that 19 people had died of Aids in the hospital, ( I think she referred to staff), and that their colleagues were now making so called Panels for them, 8 feet long and 2,5 feet wide  – the size of an American grave, with their names on them.

I asked Peggy how come  she got involved, and it had to do with that her friend Tom, that he got sick.

He had asked his friends to come in to his room, one by one, and he told them what he thought about them, and about their lives. Peggy said that they had learned a lot.

Peggy also said that he never leaves them, even though his physical presence is not there anymore. She got to grieve with him all the way, and said it helped her in her daily work with patients.

She told me I could come back to the hospital, and we could do an interview, and also meet up with an anonymous family, who were visiting their son.

That evening I met Peggy and her partner at a café for lesbians, Amelia´s.  They needed someone to  take  care of their bird while they were on holiday, and I was happy to have somewhere to stay.

 

 

 

 

Dear Friends,

If you scroll down in my blog,  you’ll find two men, Gery and Keith. 

They were spokespersons for SHANTI, as people with HIV/AIDS and they, especially Keith, gave me a crash course in gay life in the streets of San Francisco. Little did I know, about sex and drugs!

Keith and Gery met and fell in love in the middle of chaos and managed to break their addictions, and when I met them they lived a very calm life with their cats and dogs, apart from being sick.

Please scroll down, and you’ll meet them.

I was introduced to Gery’s SHANTI counselor, Sarah Finnegan.

She happened to come for a visit when I was making interviews with both  Gery (to the left) and Keith– and we got to talk. We sat in their kitchen.

Sarah was the first Shanti counselor I talked to. And Gery was ok with that.

• He was my first client. We were matched together in July of -85. I met Keith the second or third time Gery and I were together, and right away, there was just a real… We had just the right chemistry the three of us. We like each other, we enjoy each others company, so we spend a lot of time together, not just Shanti counselor time, but social time.

They watched television together, and Gery and Keith would come over for dinner with her children, and Sarah felt like they were family, and had gotten to know each other pretty well.

• It’s a very close relationship. Sometimes it’s a little complicated, because there is the work I do as a SHANTI – counselor, and I try to very clear that I wanna be there for him, in an unconditional way, in a non judgemental way, and just … be there as a witness. Just be available to him in whatever way he needs, without telling him what I think, or telling him what to do, but just be there. And then there is also the part of me that is his friend, that kids around with him, and we joke and laugh and tease each other – and sometimes I have to remember that I am his counselor, and other times that I’m just his friend.
• Are you prepared to lose him?
• People ask me that, and I don’t even know how to answer that, cause I… I think I deliberately don’t think about that very much. I thought about it ”What’s it gonna be like when Gery isn’t here?” And there’s this wall that comes down for me, and I think… Well, I don’t have to think about it. It will be ok.

Sarah talked about the possibility of suicide.

• I mean, it will be ok, in the sense that… I love Gery, and I want what’s right for him, so… If he chooses to end his own life, which is something he and Keith have talked about… I kind of feel that I… I went through this once with someone, and it was very painful, but that’s what that person chose and that’s what that person needed to do.

Whatever they do, however it ends… I wouldn’t have had Gery in my life if I hadn’t volunteered, and so… To have had this relationship with Keith and Gery has been such a treasure, it’s something very special…

Sarah talked about grief, what she would feel if Gery died, and she mentioned the selfish part of her not being able to be together with him and Keith, but she would not grieve for Gery.

• Because he will be in a place that feels good for him… When we talked about it… For Gery, death is a release, it’s a way of going on, it’s a way of going beyond what is here.

Sarah said that she tried to focus on what’s going on today and whatever it is that’s real for Gery right now.

• It feels to me as though he’s in a pretty good place right now.
• He has this tremendous sadness in his eyes.
• He is in a lot of pain, he has a great deal of emotional pain.

Sarah talked the pain Gery had had in his life, but that the other side of that was that he now loved someone, and was loved back, that it made his life complete.

• And we’ve talked about that, and I think that there are some great pleasures for him, just the day to day life with Keith, that’s pleasure for him. Taking care of the plants, and loving their dogs, and we have dinner together and we’re silly, I mean – that’s life!

And for me… sometimes it’s joyful, sometimes it’s sad, but it’s like looking at two sides of a coin, or looking at an object all the way around. You can’t have one without the other, you know, you can’t know joy without knowing grief, and you can’t experience great grief, without having had great joy, and so… And to be gifted with the SHANTI experience… it’s a very special… I read an article where a man said it’s really  a privilege, and I feel that way.

I mean, I do feel that you couldn’t pay me enough money to do this work, I mean no matter how much you paid me, it would seem like it was a privilege to do it, and so to do it for free, and to be able to do it from the heart…

Suddenly a beeper sounded, and she called on Gery. I thought it was a watch, but it was a signal for Gery to take his AZT.

I was late, so we said goodbye, and Sarah took me to my next interview. She told me how she came to Shanti – it was as part of a grief process. She said I could interview her, and that she would ask her other client, Larry, if I could talk to him too.

I had this talk with Sarah in 1987 when I first visited San Francisco. This was in the time when one thought everybody with AIDS would die. There were these enormous amounts of obituaries in Bay Area Reporter.

I met many people with HIV in San Francisco and Oakland, and out of the people with HIV that I interviewed, only two are still alive; Cleve Jones – and Gery.

 

 

 

 

 

 

There are unsung heroes in this world.

I have written a book about survivors from the concentration camps, and I have heard several stories about how young people were saved when they came to Auschwitz, often together with their whole family.

There were prisoners in Auschwitz  who were assigned to sorting and collecting the peoples belongings, to big warehouses called Kanada, but that was not all these prisoners did.

Some of them moved fast among the incoming prisoners, asking a girl that was holding a child for example if it was her child, and if the answer was no, a sibling, she was told to pass on the child to the mother or grandmother and come with him. A girl I know refused, and he slapped her face and made her go – and that saved her life.

A boy who arrived with his father, did not want to be separated from him, and he was also slapped by a man and never saw his father again, but he was saved.

The men from Kanada knew they were all going to the gas chambers.

I have never heard that these men were praised, I guess no one knows their names, or how many lives they saved that way.

I am thinking about other unsung heroes.

I have known a lot of people with HIV/AIDS, and all but two of them have passed away.

One man lives in the US,  and one man lives here in Sweden.

I interviewed him several times in the 80s, and he once told me that he had given up the medicines because they made him so sick, and it was not worth it, he said.

He wanted to enjoy his life as long as he could, so he took a chance – even if it meant he would die – but maybe that is what saved him! Until the new medicines came. He now lives a very good life, and I am sure he never expected that he would do that.

But so many others died, and there is something missing – or is it that I have missed it?

I am thinking about all the thousands of people that took part in medical trials, and suffered terrible side effects, and one did not know if it was all the diseases they got or the medicines that hurt them, and sometimes killed them.

And they were subjected to constant tests, they were real human guinea pigs.

A woman that I know was asked by a female doctor if they could make an autopsy on her son for research, and she said no – they had made so many tests on his body, there had been so many needles, they must leave him alone now – and the doctor told her that she should know that they could get access to the body anyway, but the mother insisted and said no! She followed her son’s body to the morgue, and she covered his body with roses and locked the coffin. She still keeps the key.

So many people took part in medical trials, and tried so many things, desperate to survive, and I am thinking about their sufferings and their sacrifices, and many many did not live to see the results.

And I wonder, has anyone officially said:

Thank you! We are so grateful! People can live today, because of you! Thank you!

 

 

 

 

 

(Part of photo by James D, Wilson.)

I started this work in 1986, taking classes to become an AIDS volunteer, but I soon knew I wanted to write about it. Ten years earlier I had published a lay persons book about dying patients in a hospital in Stockholm, and at a hospice in England, and I hoped to do something similar.

In 1988 I bought ”And the Band Played on: Politics, People, and the AIIDS Epidemic”, by Randy Shilts. He was at a big conference on HIV/AIDS in Stockholm, and he signed my book. However it is so well used that it is in pieces, so I can’t find that page. But I know it is somewhere.

I want to write about Randy Shilts, because he’s been such an inspiration to me.

I live in Sweden, and at that time not much was written about HIV/AIDS. I needed information and encouragement, and found it in his book, and I have only had to lay my hand on it, to continue working. And I still do.

Randy Shilt grew up in a conservative, religious middle class town in Aurora, Illinois.

He came out as gay in his 20s and moved to San Francisco, after having studied in Oregon and graduated with a journalism degree in 1975. He eventually started working at The Advocate, ”the world’s leading source of LGBT news” as it says on the Internet.

When Harvey Milk and George Moscone had been murdered in November 1978, he wrote, ”The Mayor of Castro Street: The Life and Times of Harvey Milk ”, that was published in 1982.

In connection with the publication of the book, he was hired by San Francisco Chronicle, as the first openly gay full time journalist in the American press to cover gay life, LGBT issues.                                                              This happened around the time when the first reports had come about a mysterious epidemic that seemed to specifically strike homosexual men.

Randy Shilts followed it all closely, and eventually it resulted in the book ”And the Band Played On: Politics, People and the AIDS Epidemic”, that was published in 1987.

Randy Shilts had taken the HIV test the year before, but did not want to know the answer – he did not want it to affect his writing. But when he had sent in the last page of the manuscript, he asked his doctor for the result, and it turned out to be positive.

A bit into the 1990s, he became very ill, but managed to write his third and final book, ”Conduct Unbecoming: Gays and Lesbians in the US Military”, published in 1993. (Almost 800 pages.) He finished the work on that book while in the hospital with a collapsed lung.

As his other books, it became a great success.

In a page about him I just saw that he held a civil commitment ceremony with his partner Barry Barbieri on Memorial Day, May 29th, 1993.

He died in February 1994, and was hailed as one of the greatest journalist of his time.

However I found out through the late Keith Griffith that the Westboro Baptist Church was planning to picket his funeral. And so they did, they came with signs that said ”Shilts in Hell”, and ”God Hates Fags” etcetera.

I have articles about Randy Shilts in Swedish, and one is from May 1994 in connection with the launching of the film ”And the Band Played On”, with actors who all worked for free, like Richard Gere, Alan Alda, Anjelica Huston, Steve Martin, Phil Collins, Lily Tomlin, Matthew Modine, sir Ian McKellen, Glenne Headly and others.

Randy Shilts is buried at Redwood Memorial Gardens in Guerneville, California.

His motto was: When in doubt, always tell the truth.

 

Dear Friends,

I have been doing so many things since I last wrote, and I have lost several people, old friends, but I am back now, going through my old notes from 1987 and through the years.

There was recently a beautiful post in The AIDS Memorial about Bo Huston, who ”surrounded by family and friends”, ”died at a time of his choosing, to avoid the final debilitating stages of AIDS”.

One of the nurses I spoke to in 1990, in Stockholm, talked about the silent suicides, when men who found out that they had the virus, just killed them selves, without being far gone or marked by diseases, and they left no notes, they just left.

I remember photos in the evening papers, here in Sweden, I can´t remember what year, where one sees a beautiful man – before and after photos – whose face was totally distorted by Kaposis Sarcoma.  I found them!

I have been thinking about those photos. It had to be shown, I am sure, to make people aware of how serious this is, but I also think they did a lot of damage; scaring people who knew they might be carriers of the virus. And of course scaring the public of people who may be sick.

I have written several times about a young man I knew, who commited suicide in 1984.

He was from a very small town, and he sang in the local church, so he was known by some people in the area. He had just finished his education as an actor at the Theatre Academy in Stockholm, the last time I met him. He was very happy that day; he had landed a part in a play on television, and he had gotten a job as an actor at a theatre in the countryside.

He came out as a gay man to his father that summer, (his mother had died a few years prior to this) and all I know is that his father responded to what he said, with silence.

It must have been very difficult to come out as gay during those years, especially in a small place, as it came with a baggage of danger and possible death. Four or five other young men from the same area, had commited suicide, around the same time. Maybe my friend was triggered by their deaths, and one wonders if someone else was triggered by his. Or if it ended there.

But I think one of the reasons may have been fear of what was to come. And loneliness. He lasted a very short time in the city he came to work in. He had never lived alone before.

A partner from his youth, quoted him saying that it was difficult to find love. Sex could be found, but not love. The men he had met,were not interested in love, in having a relationship. I have a feeling that this world was too complex and too hard for him to live in.

I have heard of several suicides in San Francisco, and I remember an article from one of the AIDS-Conferences that said that help to commit suicide was much more common than one had known before.

Being involved when a person commits suicide is very hard to talk about, and not only for legal reasons. There may have been complications; not all people die peacefully.

It may have turned out to be the most terrible day in a person´s life:

I think one of the hardest things to do, is to help the person you love to die when you don´t want the person to leave you, but in the same time you don´t want the loved one to suffer.

It must be the ultimate act of self denial, and desperate love and grief.

Gary came highly recommended.

I had spoken to one of the volunteers at SHANTI before Gary came to see me.  He had such high regard for Gary, for how he cared for his clients and helped them, the incredible intensity of it, the volunteer said.  That man who turned out to be HIV-positive, said to me that if he ever got sick, he would want Gary to be there with him, when he died.

Gary was 48 years old when we met.He was originally from Indiana, and he came to California in 1966…

• It was the the year of the Hippie-thing started in San Francisco, a lot of rock & rolls called it the Summer of Love… and I came from New York where I had been training and working some as an actor in the theater.

Living in California was quite different from living in New York.

• People were smoking Marijuana and taking LSD and listening to different kinds of Rock & Roll, growing their hair long, and… all that stuff was going on, and I did that for a while. And then…

In 1968 he met the woman who became his wife, and they began living together in 1969. They got married in 1970 and have two sons.

Gary went back to school and got a degree in Broadcasting. The family moved to Illinois and there he worked with cable television. After two years they returned to California, and Gary became a freelancer, producing and directing ”mostly business communication television”, and that was what  he did when we met.

• My wife is a nurse, and… much of my life and energies, I think, are really focused on my children and my family. I have a really nice family, a really good support system.

I first got involved in the AIDS-epidemic… when I, of course followed all the early stuff in the papers, and was always very interested, and since I really define myself as a bisexual person… I suppose that… My nightmare was that I would contract the virus, give it to my wife, we both die and abandon our children, that was my nightmare.

At around the same time a friend of Gary and his wife called – he wanted to do some volunteer work and Gary´s wife, who by then had had several AIDS patients, suggested he´d call SHANTI, and so he did.  After he had gone through the SHANTI training the friend called Gary.

• And he said: ”This is wonderful, it has changed my life. You should do this, you´d be very good”, and it was sort of at the same time that I was feeling… a lot of fear, around AIDS, and came to the conclusion, you know, like I had two choices; I could either run away from it, or I could run toward it, and running toward it seemed… more beneficial to me… but I did it sort of a step at the time. I filled out the application, I waited for a while, wrote my essay, I did the interview, I didn´t think too far ahead, I just did it step by step.

I wondered if Gary had taken the antibody test, and he had, right after he had sent in his application to become a volunteer, and it came back negative. To be really sure, he needed to go back for another test 6 months later, but he didn´t do that.

• I really didn´t want to know, I mean, you know… So, so I took the training and I became a volunteer, and in December it will be two years. I have been a volunteer for two years, emotional support.
• So, how was your first client?
• My first client… actually ended up firing me, in a way. It´s a man named Bill, who was about 55  years old. He had had the same lover for sixteen years, but had decided that they would… remain together as room mates.

The couple owned a lot of properties, and were very well off, and Gary said that they had a beautiful apartment that they had shared as lovers for a number of years and as room mates for four or five years, when he met Bill.

• And he was interesting, cause I have never seen anyone prepare for death the way he did. It was like, he had done all the banking, he had done his taxes, taking all the insurance, putting stuff in to his friends name; he had made all of his funeral arrangements.

When I met him he was… supervising having the house painted and the garden redone, cleaning  out his closets – he wanted to be able to die, and noone would have to do anything, make one two phone calls, so he was really well organized in that respect, but not really wanting to talk a whole lot about feelings. And… I met him once, and we had a very nice conversation, and subsequently we must have talked on the phone maybe a half dozen times, and each time long conversations, thirty, fortyfive minutes, but he never wanted to, in all my attempts to make a meeting time with him, he always had some reason, ”I have to do this”, or ” I have to do that”, and… So finally we did make an appointment to meet, and when I arrived there was a note on the gate telling me he couldn´t make it, and when he was ready for me he would call.

Gary wrote him a letter, but the never heard from him again, he didn´t even know if he had died.

• … He just didn´t want to talk… it was something he wanted to do initially, I guess, I don t know.

Gary´s second client was a man who had lost his lover, one of the first people diagnosed with AIDS in the city, and many friends and people he worked with, and he just could not stop grieving.

• So… he became a client of mine… and… I like him a lot and we spent… about four months together, and he finally came out on the other side and felt much better, and felt there was no need to go on. I have talked to him since, and he changed jobs and has a new lover, you know, and so things sort of did fall into place for him.

Gary´s third client was a man called Dwayne. He was 33 years old, and Gary knew him for about five  months.

• He was real central to the whole volunteer experience, and I got really close to him… When I met him, he was 32 or 33 years old, divorced, two children. A third adopted child.

He´d been in the army… He had decided that he… felt all these sort of homosexual feelings and he felt like he needed to explore those. He kind of wanted to say to his wife ”I don´t know who I am and I don´t understand this, and I need to go off somewhere and explore this”… And the minute, of course, he said gay, she freaked out, divorced him, and his family all got nasty and he became an outcast.

During a four year period everything happened to this man, separation, divorce, trying to start a new life, had some really ”rotten kinds of relationships”, said Gary,  and he was forced out of the army because he was gay, and then he got AIDS.

• You know… he had been an abused child, I think his mother was probably an alcoholic.

Here the months and the years were a bit confused, also the diagnoses, because it was so much, but he had been diagnosed with AIDS in August, and Gary met him the following March, probably in 1986.

• He lived in a SHANTI- Residence, he didn´t have any money, that´s where I met him… He had gone to Arizona to visit his children, and became really sick.

He had gone to a VA Hospital where he got his diagnosis, PCP, and after that he came to San Francisco to a SHANTI-place.

• He had… he practically had a new disease every month.

It was CMV that made him blind on one eye, Microbacterial infections, Tuberculosis infection. Kidney problems. Kaposis Sarcoma, for which he received radiation several times.

• The lesions would get so bad in his mouth that he had a hard time swallowing and eat and stuff. And he had a rampant trush in his throat and mouth, so he had a lot of stuff. The time I knew him he was in and out of hospital a lot, and he died September 8th, so he has been dead just a little over a year.

He had no support system. He had one friend, he had me and one friend… and that was pretty much it. Lots of issues with his family. Dwayne was eventually moved to a SHANTI 24 hour houses, they were like hospices – they don´t exist any longer. It was sort of like a hospice. He was on oxygen 24 hours a day, his lungs were in pretty bad shape, and ultimately contracted a second PCP, and KS lesions went in to his lungs, and… In the last three or four weeks they stopped the medication.

• Where did he die?
• He died at the SHANTI-House, which was like a hospice. It was his choice, he didn´t want to be in a hospital.

I wondered about his family.

• No one ever came to see him. His parents would not let him come to see them, it wouldn´t be the same anymore. They would call and say: ”We love you, we´d do anything for you, but we can´t be around.” They would be ostracized by other people.
  You know he had a brother, his brother wouldn´t come, his brother had a small baby, and he couldn´t be near him, you know. They wanted to love him from a distance.

• And that was in 1986, when people knew!
• Oh, yes! We sent them articles and scientific studies, his doctor called them and told them, but… they wouldn´t come anyway.

So… he and I were alone in the room together when he died. And he died with me, you know, sitting at the bedside, holding on to him, so that had never happened to me before, and the fact that he had no support system, I spent a lot of hours with him.

Here Gary started talking again about how they went in and out of hospitals, but also about different treatments, and it ended with that he was very close to Dwayne.

I wondered how Gary´s family had reacted to what he had been going through with his clients, had they been supportive?

• Oh God, yes!
• You said he was essential, or very important to you, this specific person, and how?
• Well, for one thing. It was probably my first… you know, my first real full experience with a person with AIDS, as a volunteer… and… it was my first experience of knowing what it´s like to … love someone that you might not necessarily like, not necessarily ever met otherwise.

Had Gary met him under other circumstances he would have just walked by him, like he was just another person.

• Well, I met him, and learned what that was like to love him. And to understand…

Gary talked about what he had thought love was, that it had to do with someone who was related to you in a blood line, or was a romantic sexual partner.

• It was the first time that I really felt that sense of this really deep and committed love to someone who was none of those things.

It was hard to hear what Gary said after that, but I did hear him say: ”Oh, I learned so much from him…”.

Here Gary talked about people with AIDS that were between 28 – 35, that he didn´t see them as really adult people.

• You know, you are still trying to pull yourself together, and then you have to deal with dying… And I felt like he wasn´t a complete person, a male mature person, he made a lot of silly foolish mistakes that young people make.

Gary talked about some destructive situations, where Dwayne became a victim.

• Cause he would go into these situations in a not very… not thinking. Not a very mature person, but he definitely went through a process… near the end, where he softened up and he became really giving, and… and grateful to those people who were taking care of him. He let go of so much, you know, was much more forgiving to his family. It was just a process he went through that was… moving for me, and you know, I scattered his ashes, and dealt with his belongings after he died and stuff like that.

Gary and his friend had taken his ashes to Fort Point, under the Golden Gate Bridge, and scattered them.

• So what happened when he died… was he conscious?
• … Well, the day that he… we knew it was getting close, and then someone from the hospice called that it was probably going to happen now, and I went over early that day… and they had given him a little bit of morphine to slow his respiration.

Dwayne was breathing so fast that the breathing was uncomfortable for him. He was turned every two hours, because he could not turn him self, and they kept his mouth moist.

• So he never spoke to me that day… bu the acknowledged me with his eyes. I mean I knew that he knew that I was there.

Dwayne then entered into a condition where his breathing would come and go.

• So when I was there and his friend was there, and we´re both sitting – and here Gary showed me, he stopped breathing, was silent, and started breathing again – like that, and he´d stop and I could feel my adrenaline – he showed me how it rose in the air – He´s dying!

Gary and the friend took turns with Dwayne, and when Gary came back he started to think about the situation.

• My feeling was; if I´m having anxiety and adrenaline when he stops breathing, that means I´m afraid he´s dying, and if I´m afraid, how can I expect him not to be afraid, and how can I be there for him?

It was a process that Gary had to go through, to let go of his own fear, and to let go of Dwayne, to let him go.

• So when his friend left in the afternoon, and I was going to sit for a while… the attendant came in and turned him, and he knew he would´t be there when he came back, so he came in to say goodbye to him, turned him, washed his mouth, and left.

Gary moved to the other side of the bed, and as he sat there he started singing.

• … I sang to him the songs I had sung to my children, and when I finished singing suddenly his breathing changed, and it was like… I knew in a real calm and peaceful way that now he is dying. So I got out of the chair and sat on the side and put my arm around him and held on to him, and I whispered ”I love you”, and he stopped breathing,
• You did…
• So he… it was very quiet, you know, he just stopped.
• What did you sing?
• I don´t remember, except there is a folksong I used to sing, it´s called ”Weep all ye little rains”, some old folksong… Yeah, you know what he taught me about living with AIDS, and what he taught me about dying, subsequently he taught me a lot about grieving.

Here Gary told me about other clients that he had had for a short time, when other volunteers asked him to step in while they went away, for example.  But then he continued with his current client, Ed.

• So… Dwayne died… September the 8th, and five weeks later, on October 16th I met my current client, Ed, he is 35 years old from Montana.

There was a whole lot to tell about Ed, and Gary didn´t know if he had the energy to do that. But he started. Ed had dementia, he was diagnosed with PCP, KS and waisting syndrom.

• So he got lunier and lunier, and at the same time thinner and thinner, and   it´s like… He´s been in hospice now for three months, and we didn´t think he´d live until we got a bed for him at hospice… and, the night before we went, we almost cancelled going because we thought he was going to die.

I don´t think he´s eaten what you would consider one full meal in three months. He drinks fluids, milkshakes, maybe a bit of jelly now and then, because he can´t eat, he doesn´t eat, but the hangs in there! It´s just he is dying very slowly, VERY slowly, r e al slowly.

What I learned from him, was I learned how we all think we live in our minds. If you are not right in your mind, then you don´t really exist. It´s just some kind of attitude about mental illness that I learned a lot about… that   it´s difficult, really hard to watch someones mind slip away.

I asked Gary to tell me about Ed, what he was like. Would he know what time it is, if someone asked?

• It all began when I first knew him… and I didn´t know that he had dementia, but there were things like… It all began with the kind of things that happen to everybody, like you can´t find your check book, you can´t find your keys. Well it happened to him all the time, he would put things down and not remember where he put them, so he was forever not paying bills, not finding his keys, couldn´t find his wallet, couldn´t find his check book, lot of stuff like that.

When I first met him we went to see a movie, it was real obvious to me that he had a hard time following the plot. It was a dumb movie, it was not some that was real complicated or obtruse in a foreign language. You know, so little things like that, like being forgetful, being confused… down to being out on the street, not knowing how to get home, and not remembering someones phone number.

It came all the way to that there were days when he didn´t know who I was. Now he has no sense of time. He couldn´t begin to tell you what happened yesterday.

Ed could start a sentence by saying: ”Could you get me”… but forgot what it was he wanted, and there was a period when he was very demanding. Gary said it was a real struggle ”losing his power”.

• Who was he before?
• Who was he before? Oh, I don´t know. I think he was a very simple kind of person. He grew up in Montana, real close to – and here I had a hard time hearing Gary, I think he said ”his grandmother”, and his grandfather. They had a ranch.

Ed had worked a lot with horses, worked a lot as a child, and didn´t go to school much. He worked in grocery stores and eventually worked him self into a top position.

He had an older brother that moved to Oregon, and he followed, but not to the same city.

• He was out with a friend of his and they went in to a gay bar, and in that gay bar he saw his brother, and it turned out that they were both gay, and they didn´t know.

Gary said that they then lived together in the same city, and double dated and had their lovers. The brother got sick, he had an infection in his heart, and Ed took care of him. Eventually the brother moved to Palm Springs and Ed moved to San Francisco.

Lots of things happened, Ed´s older brother died of AIDS, his mother died, his lover died and two room mates, and then he was diagnosed.  He had ARC for a long time, and was near AIDS.

He didn´t talk a lot about feelings. Gary said he didn´t think Ed had the language for it, to be able to say ”I feel this now”.

• I always felt like he would just go down so far, and then just stop… Maybe there was nothing below that, I don´t know.

But now, in hospice, he would talk a little.

• • He likes to reminisce a lot about his childhood, to think back about the past, and… we did a lot of that, and… he´s very sweet now.
• 

I eventually met Ed too. He is the man with the teddy bears.                                                                                                                                                                                                  Gary talked about different insights he got as a volunteer, as he was sitting there with Ed.

• • • I go there almost every day, and sit there, and… from a volunteers point of view, it’s like: ”Why am I doing this? Of what good is it? He can´t remember. If he can’t remember that I was there yesterday, then what difference does it make if I’m there or not? Am I doing this right? Am I doing it wrong? Does it make any difference? What use is it?” I mean you go through a lot of those kinds of things, trying to figure out what the hell is going on.

I think that I come with the feeling that I’m there to learn something. I am not sure what it is that I’m learning, yet! (Gary laughed a little )… and, watching him… change… it’s like he´s become almost transparent. He’s so so thin, his bones all stick out.

Today he asked me – I scratch him, now he calls it itching – ”Would you itch me?” So, just because his skin is dry, and I have him roll over and slowly scratch his back, and his belly and his shoulders, and it´s alarming you know, but I´m used to it, but it´s still alarming when you put your hand on his body and scratch him, because it´s a skeleton…

It´s like watching him become holy… become transparent, it´s like watching him slowly disappear, you know. I just have this image of him, being transparent, being transformed… and maybe that is what death is.

In some ways it seems to me like… how extraordinary it must be to have the opportunity… to hang in there and to die really slowly, as oppose to being killed in an automobile accident.

Gary talked about the author Steven Levine who had talked about what many American´s say when they die, that their last word when they collide with a truck or something, would be: ”Oh shit!” Gary laughed a little.

• • • Shit! Boom! Dead! So in some ways I think it´s kind of… It´s kind of a privilege. He never complains, he doesn´t have any like raging infections, he has a cough, real bad, but it´s not like he is in a lot of pain. He never complains.
    • Did you ever talk about that he is dying?
    • We did a little bit. He was real reluctant when we told him there was a bed available in the hospice, that he was going to have to give up his apartment. His father came from Montana and his other brother came from down South, and they had to move everything out, emptied the apartment.

So it was like giving up going into this place, and he said to us (Gary and the other attendant, a nurse): ”I´ll live there the rest of my life? ”… And we said yes, and he said: ”But it will be a long time.” And none of us said anything because we didn´t think it would be more than two weeks. Three months later and he´s still there.

I asked about his family. The father had remarried, and didn´t want Ed to come home to live with them, because they couldn´t get good help there. But Gary thought that it was the wife who didn´t want him to come. Ed´s brother had come home to die, and Gary said it had been horrible.

• • • And his younger brother who is 28 years old, and this extraordinary handsome construction worker, you know, and just heterosexual to the core, and homophobic… and he´s just blown away and he can´t understand how he could have two brothers that were dead, it´s really hard for him… And his father can´t even say the word gay. But he´s trying.

The father had been to San Francisco to take care of some business matters and he had called Gary several times.

• • • We talk on the phone a lot. I´ve become one of his support people, mostly because – he said to me one time: ”Well, you know the people here are just cow people”, he said, ”they don´t understand.” So I don´t think he can talk about what goes on for Ed with a lot of people in his own community. And I said to him, when I first met him, ”You know, I´m a parent, and I just couldn´t imagine the level of pain you must have, loosing two boys to this awful…”

And here I had a hard time hearing Gary, only words here and there. Maybe he was moved, I don´t know, but he quoted the father talking about ”a world of pain that you don´t see.”

It helped the father to talk to Gary, because he visited Ed so often. Telephone conversations would be difficult because Ed would just hang up without saying good bye, or he would be so confused that it was impossible to understand what he was talking about.

• • • The only real contact you can have with someone like that, I think, is to sit there and hold his hand. Just to be there, with him. There´s nothing to be achieved from phone conversations, so he´d say ”Would you please tell him I love him” and stuff like that. So… it´s unfortunate… I don´t think he has abandoned Ed, it´s just the circumstances…

I wondered if Ed understood that his father was sending him messages.

• • • He went through a lot of stuff when he was first diagnosed about his father, wanting a lot more attention and affection from his father than he was probably getting, and not getting enough understanding, a whole lot of stuff like that.                                                                                      And then, along the way he´s let go of of all of that. He´s let go of everything, he´s just there. He´s a pure existentalist, you know, it´s like he lives in the here and now. There´s no past and there´s no future, and he´s just here, you know. And he´s in a good mood a lot of times, and he smiles… he´s just there! He let go of everything, it doesn´t exist, doesn’t touch him.

Ed had friends, some did not visit, ( and Gary had issues about that) some did, and some had been helpful, moving furniture and other practical things.

• • • Did he make plans for his funeral?
    • He wanted to be cremated and we talked about that… He doesn´t have a will, but everything is pretty well taken care of … and I´m just… waiting.

Gary laughed a little.

• • • You seem to be in a pretty good mood, although have been working with this.
    • Oh, I am tonight, I guess… Oh, I sat in the car this afternoon and cried, and I cried which is something I never did growing up, or as an adult. I never cried.

Gary talked about the day they were moving Ed out of his apartment and to the Hospice.

• • • And I went into another room and cried, cause I was just so touched by what was happening.

The attendant wondered what was going on, and Gary told him that he was not falling apart, but that he could not do this work without crying.

• • • That´s how I do it, I said, ”You need to do that, I need to do that”… so that´s one of my coping mechanisms. And I talk a lot. My wife, she´s a nurse, she´s in labor and delivery, so I come home and talk about death and she comes home and talk about birth, and there are a lot of similarities. So we´re kind of (a) nice mutual support system.

Gary sometimes had a very personal relationship with his clients, he didn´t encourage them to come to his home and hang out, but they had been to his home and had dinner with the family.  And they had been to candle light marches together for examples, both Dwayne and Ed.

• • • I have a special relationship with them, and it´s separate and different, but it´s not secret or forbidden, so my family knows my clients.

Gary thought that Ed felt that he missed companionship with women, and he had specifically asked for women attendants at the hospice. There was a real mix at Coming Home Hospice, so that was one of the things that Ed liked about being there.

• • • What has this meant to you, for your other work.
    • It certainly has changed my priorities, and I often say that the volunteer work is seductive. I see it suck people in and change their lives. They want to quit their lives and do it all the time. You want to quit your job and do it all the time, you know, and I certainly have been through most stages… I don´t think it has affected my work much, except there was a time when I lived in my work, and now I don´t live in my work. My work is what I do, to live, (Gary laughed a little), so I have a clear sense that Yes this is what I do for a living, and I try to do it as well as I can.

Gary had a very supportive business partner, so he could work his hours the way he wanted to, come in late because he had breakfast with a client, etcetera. She would cover for him.

• • • Let me say one more thing, that… that it consumes, it´s consuming, the work, and… when you are always aware, like I am now; how far am I from the phone? Cause I am waiting for that call, you know, because I have a client who´s real sick, but even if I didn´t, it´s like… I´ve had clients call me, ”I have to go to the hospital”, I´ve been in emergency rooms in the middle of the night, so there´s that kind of thing that´s consuming and has an element of excitement which fills up all the cracks and crannies in your life.

It´s not like ”Well, shall I go to a movie?”, or ”Shall I go out for dinner?”, it is like ”This is something that must be done!”, you know, it puts a channel of challenge, of urgency in the life, that I find fulfilling, so that´s one way in which it´s changed my life. And sometimes I wonder if that… that isn´t the way I´m using, using the work in order to avoid all the other kinds of grey areas and cracks in my life.

But in some odd way… one of the major changes I think it´s had in my life has been my relationship to my children and how very… very dear they are to me, and how I… seem to treasure a lot of moments more than I ever… And I try to stay in the here and now, and in some ways see them as clients… and see a responsibility to be supportive of them and to be non- judgemental, and to listen and reflect and give them power – which are all these kinds of little do´s and don´ts part of the SHANTI-training.

I wondered what it had meant to Gary, being bisexual, and he said that he felt really comfortable with his clients, but most people who are working in and around the epidemic are gay, and that he feels a separation from them.

• • • I can go into a big grop of gay people and start talking to someone and the minute they find out that I´m married and have children – here Gary showed that they disappeared – I´m different. You know, real subtle, but I feel that, and also it´s like gay people have their own culture, and it doesn´t make any difference what your sexual preference is, you know, your sexual preference could be… someone of your own gender, but gay is a culture, it´s a community, it´s not JUST a sexual orientation. But it´s a cultural thing, and most of my life is spent around heterosexual people – where I don´t belong either! (Gary laughed.) So I go through little bits and pieces and things like that.

Gary talked about the extraordinary people he had met, men who he said had more love and commitment to their partners than many straight people.

• • • A lot of extraordinary amount of love and care. And I´ve met a lot of lesbians in the same way, and straight.

He said it was a good feeling to be part of that community of caregivers.

 

We talked about grief.

Gary had lost his father at a young age, and had experienced grief then, although it took some time to realize that his father was never coming home again. But he was suddenly the adult in the family, the man in the house, so he never really dealt with it.

• • • Maybe grief is just is just a painful acknowledgment of loss, you know, and so… For me it´s been better in some ways. There´s a beauty and a tranquility and a joy in a grief that all come together at some point… so that I can be with my 8 year old son and have a nice moment with him, and being filled with joy of being in his presence and grieve at the same time that we are mortal, and will he grow up with me? So this won´t go on forever.

We talked about people that were dying, and Gary talked about learning a lot from them, but not always in a profound way.

• • • Supporting someone living with AIDS, you know, you can go through Suicide-intervention and anger and all sorts of stuff that people go through, you know, going through this process, but when you get to the point where we call them dying, there´s a kind of an extraordinary softness, just this wonderful kind of… The attendants who work in the hospice, what they love most about Ed is his smile… and they love coming in and making him smile… And it makes them feel good. Isn´t that funny, it´s just like being blessed by him. So I think there´s a lot to be learned.

Gary considered it to be an honour, to be with someone who was going through that process.

• • • For that person to let me in and to share that is my privilege, you know… it´s something that… is a gift.

And here Gary started to talk about the old allegory about a tree: If a tree falls in the forest, and there´s nobody to hear it. Did it make a sound?

• • • It´s a philosophical discussion around that, and I often think, if you suffer and I don´t witness? So in some cases I see… my job as a volunteer to be a witness for someone else’s suffering, which for them validates it… and that in a way is an honour.

Those words became very important to me, as I am also ”a witness”, so Gary gave me the title of my work ”To be a witness.”.

When I started my blog, I had to add really, ”To really be a witness”, because there were a lot of links to religious pages, about being a witness who gave a testimony.

I wondered if his work had meant something to him, spiritually?

• • • • Did you have a religious…
      • You mean, did I become more religious? Did I become… No, I don´t think it changed anything for me spiritually, except maybe it heightened it, my spiritual feelings… But I mean, it´s like did I become a born again Christian or better Catholic, or a kind of a Buddhist… No, none of that. And have I become a believer in reincarnation, no none of that, and I don´t even think I could describe my spiritual life to you, except I think I am a very spiritual person… and I feel tuned into other people´s spiritual qualities, but I doubt I could describe it to you.
    • • Did you do the Death visualization?
      • In the training yes. Do you know what it is?
      • I´ve done it.
      • Oh, you´ve done it.
      • Who was there, at your bed?
      • … My children, my children. And my biggest grief was really my children.
    • • Did you chose to go? (And here I meant towards the light in the tunnel. )
      • Yes.
      • And who was on the other side of the tunnel?
    • My father… (Here Gary sighed really deep and stated, as in surprise). That was an extraordinary experience for me. And that visualization was lead by a man with AIDS and he was really good at it… I just, I thought I would cry until my brains would fall out (he started laughing) I just thought I would come apart, I was just, it was an extraordinary experience for me.

The words after that are a bit confused, if he went back to life, or if he stayed on the other side of the tunnel, it is unclear where he saw the light at that time.

• • • When I went towards the light it was ok, it was ok and I could see… I could see my wife and my kids at my graveside crying, mourning, and feeling that that was wrong, something very… (inaudible).

I asked him if he would continue, or if he would be burnt out, and he didn´t think so, as long as there was a need. He didn´t think he could walk away!

• • • How can I know what I know, how can I have seen what I have seen, how can I have felt what I´ve felt and walk away?! It would be harder to walk away, than it would be to stay. But I have a real sense of urgency about the epidemic and a terrible frustration that, you know… There´s a war going on, and I´m part of this little teeny weeny battle over here, so I feel like it… I´m really not burned out.

My burnout doesn´t come emotionally so much from ”Oh God! I can´t take this!”, you know.

There were other things that would get to him, thoughts about why he did the volunteer work, getting to know young men who died, and then meeting another one, who would die, it was more like ”What am I doing here?! ”

But also everything he felt responsible for, the business, his business partner, his spouse, the children, his clients, and the support group, and visiting Ed who was sleeping, go home to have dinner with the children, visiting Ed again, and now talking to me – the day did not have  enough hours.

• • • It´s like there aren´t enough hours of the day to do all the things I want to do. That´s where my burn out comes from, or could come from.
    • Go home!

But then we got to talk some more about grief, about some words by T.S. Eliot that he had written when his daughter died: Grief is like a spiral staircase.

• • • So in that sense it´s something that you think you are going away from, and you round that circle, and there it is again, so it comes back and back.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Robert ”Bob” Pitman, even Bud.

We met through SHANTI, and he was so easy to talk to.

On the short way from the Names Project, where he picked me up, to the restaurant he told me about friends and about San Francisco, about ”circling the wagons”, suicide, and … things I had to return to later in the interview.

Robert was 46 years old, and he came from Cleveland, Ohio.                              He was a child counselor, a playwright and a director. He was a Practical Support Volunteer from SHANTI, and he also volunteered for Project Open Hand, delivering meals to people with AIDS.                                                              He had lived in New York, and when we met in 1987 he had lived in San Francisco for seven years, with his partner, Bob.

I wondered if he had come out at work.

• Pretty much. In fact the only people I’m not completely totally frank with, is my parents. That’s… and I´m not deceptive, I just don’t force issues. They have stayed in my house, and my lover and I have slept in our bed, and… we have a portrait of ourselves, which makes our relationship very clear, that we don’t take down when my parents come to visit, so there’s no way that my parents can’t know, but… it’s never been articulated.
• 

When it came to AIDS, he had a plan.

• I’m looking forward to visit in October, after the National demonstration on Washington, I’m gonna stop in Cleveland where my parents live on the way home. And I’m sure the subject will come up, and I’m determined now to be as frank with them as it is possible to be, without being hurtful.

I wondered how Robert came in to AIDS work. And that lead us straight in to his work at the theatre. He was engaged in Theatre Rhinoceros, a local theatre company in San Francisco that do plays with gay, political or social content. (Still active. ”America’s premier and longest-running queer theatre” it says.)

• During 8 months in 1983, we lost as many members as months went by. It was every other week or so, someone else was dying, someone else was going back in to the hospital, someone else was coming down with something, and… It culminated when our founder and artistic director was in the middle of auditioning the west coast premiere of Bent, choosing actors, and he collapsed, and it was PCP, and… it was… That was like the… the climaxed trauma of that whole winter and spring. And, so when it was all over and we got the show opened, he died…

I was emotionally, just… I don’t know what you say, a basket case. I did a lot of weeping, whether I wanted to or whether it was convenient in my life or not. It was just… I had no control over my grief. And… I … went to SHANTI, feeling like, well, I gotta try and … help out in some way.

Robert said that he found, ”the strange thing about this work”, that it was not about saving the situation, but by doing what you can.

• By doing what you can, you lose that feeling of powerlessness, that… feeds on grief… and I began to… be able to control my grief – not that I didn’t grieve, but… I choose when to do the grieving, so that it fit the rest of my life, so that I could have a life too. You can’t just break into tears, (he laughed a little) any time you feel like it for very long, and get very far in  this society, so that’s what I’ve gotten from this… this… ability to manage and harvest my grief.

Robert talked about the incredible people he had met through SHANTI; People with AIDS, and people who help People with AIDS.

• And… seen a lot of examples of… how to go. I mean, I’ve seen some incredibly noble people… and some who were a little more human… but… I learned a little something from all of them, in terms of this process.            You see, I should tell you that, ah… I fully expect to die of AIDS. I don’t have AIDS at the present time, but I have enough other conditions to be declared ARC, (AIDS- related complex), although we haven’t officially done that…

Robert told me he had, or had had a number of illnesses over the last year, which made it pretty clear to him that his immune system was breaking down. There was talk about ARC, that 50% would go on to have an AIDS- diagnosis, but Robert thought it was 100%, but as he said, it was his personal opinion. He was not very optimistic about a solution in his time.

• So my whole concentration through SHANTI, is to concentrate on right now. Today. Tomorrow.

I´m a practical support volunteer. That means that I do the dishes, and carry out the garbage, wash clothes and cut the grass, and… give them a bath, shave them, what ever they need. That´s practical, is not having to do with their emotional needs.

• Why did you chose it?
• Has to do with the kind of person I am. I need a high probability of success, when I go into something. If I was an emotional support person, in a sense when I arrived, I´d be saying: ”Hi! I´m here to make you feel better.” As a practical support person I´d say: ”Hi! I´m here to do the dishes.” I have a much higher potential for success as a practical support person, and the reality is that a lot of emotional support goes on in the practical program.

Robert mentioned a woman that was running the Practical support program, and what she said about the relationship to the client.

• She said ”The best place for us, is a half step behind at the elbow.” And that really sums it up, just slightly behind. So that… If they are in denial, we are in denial, if they are in acceptance, we are in acceptance… It´s not our job to point out what they are experiencing, no, it´s our job to validate it, validate their right to it…

One of the things Robert had talked about before we started the interview, was the relief he had felt when he was diagnosed with the virus.

• I was saying that after living in fear of coming down with this disease, for years, to finally have something definitive happen, even though it was negative, even though it turned out to be a sign that I´m probably going to get sicker… at least the wondering, the worrying was over. Now I have something concrete and real, something definite to deal with, and that brought with it a kind of relief, a kind of ”at last”, you know.

We went on to talk about his lover.

I wondered about him, how he was doing, and Robert said one of his lovely lines:

• Peasant stock. Nothing´s gonna kill him.

I wondered if he was also involved with SHANTI, but the wasn´t. But they were both involved with Open Hand, that delivered hot meals and bag lunches to People with AIDS.

• We do that together. One of us drives, and the other one carries them (the food) up to the place. We started doing this, specifically, because we were looking for something we could do together, make some kind of contribution to the situation, so that´s how we hit on the Open Hand.

Robert said he had more experience with SHANTI, than with Open Hand.

He had gone through a training at SHANTI to be a Practical Support person. It was over a weekend, and during that time some of the participants bonded ”incredibly closely”, so they asked to be in the same support group. It was a small group, six – eight.

• You meet up every two weeks and just share what ever you´re experiencing – some time you have to get rid of some grief, some time you have some anger, some times you just have some practical problem.

Robert said that there were always more experienced people than less experienced, so they could help and guide.

• There were times when… I could not, all I could focus on,was to just keep it together til Wednesday night, just hang in there, cause Wednesday – if you need to let it go, you can let it go, because it is a safe place.

Robert said it was a classic example of that concept, a tremendously wide group. There was a 65 year old nurse, a young man studying to become a Catholic priest.

• Couldn´t believe it… Catholic priest in my group! (he laughed)… Just all kinds.

I wondered if they had stuck together, but as SHANTI grew, new groups had to be created, and people moved in to other groups.

• I went to several of those,  and it´s kind of a natural organic growth kind of thing.
• Why did you stop?
• I did it for two and a half years, and I became sick. When I got better I realized that I was stalling in calling back to get a new client.

He postponed and postponed, and in the end he realized that he didn´t want another client, and he went to SHANTI to talk to them.

• And SHANTI is very wise, the organisation. They make it very easy to leave, so that it is easy to come back. And they said: ”Hey, you know, you don´ t have to apologize to us. We… wondered when you were going to burn out. You know, you can´t do this for ever! God bless, and if you feel like coming back, let us know.” And that made me feel wonderful, because the truth of the matter is I was feeling a lot of guilt around it.

Robert talked about the beginning of his time as a volunteer, when he couldn´t wait to get a client.

• Start doing something good… being able to … make a concrete difference in somebody´s life… it is the greatest high in the world.

I commented that people I have met seem to be very content with that hey are doing.

Robert talked about how one quickly learns from people that are facing death how unimportant many things are, superficial stuff.

• Once you clean that out of your karma, you got a nice life going, you know, so that´s why people seem serene, if they do.

Talking about karma – did Robert have a religion? (He laughed.)

• A little bit of this, a little bit of that. I was raised in a protestant church in Ohio, and… my memory of it is that the church was like the primary social institution in our lives.

I don´t believe any of the mythology around Christianity, but… I do find that I live my life by certain moral values, absolutely, absolutely consistent with what I was taught and raised as a child. So… I´ve eliminated the… theatre, and I´ve internalized the value system, and it works for me, I have no problems with it.

So, had AIDS changed his life dramatically? Robert laughed a little when I asked that question.

• My friends have died. Ah… my activities, the way I behave, the things I do. That sort of things… When it comes to gay activities… People talk all the time about the negative things… the negative changes around the AIDS-situation… I think it is more important to talk about the positive things, and the things that are positive, are very very positive.

Prior to this crisis we existed, or were organized – let me put it this way – we, as a group around our pocketbooks and our groins. Our social institutions basically reflected that.

Now we have institutions like SHANTI and the AIDS-Foundation and Emergency AIDS Relief, and Open Hand and this and that and the next thing… on the other side of the crisis.

If we survive it as a subculture, and I don´t know that we will, we will really be important. IF we survive, we will be incredibly strong, and incredibly gentle… if we survive… The question to me, I think… I see… internment.

In a previous post in my blog, about Keith and Jay, Keith feared that people with AIDS would end up in concentration camps. Having interviewed survivors from concentration camps in Poland and Germany, it was difficult to see that something similar would happen to People with AIDS, with mass murder, gas chambers and crematoriums.

But here Robert started talking about something else; the Japanese internment camps in the US during World War II. Maybe that was what Keith had in mind.

• I think there are many parallells between where the gay community is today, and where the Japanese community was before World War II in the United States. We are both… subcultures in… intact within the greater culture, mysterious to… some degree to the greater culture, and… to large portions of the greater culture, also anathema.
• What is that?
• Anathema… we are despicable things, we are despised, hated. Now, in the cases of Japanese it was racial, in the case of us, it´s sexual, but it´s exactly the same dynamic. And there were special groups… that were pleading special causes against the Japanese, because the Japanese were successful.

The gay community is perceived as very successful – I can take you down and show you some of the hotels where we deliver these meals, and defy you to find a successful homosexual. But the public perception is… that we are all white, we all make 80 000 dollars a year and stuff.

My point is that, in many ways… the Japanese Americans, at the beginning of World War II, and the gay community now, are in similar positions,(hard to hear, but I think he says (ir))relevant to the rest of society, and… When the AIDS-crisis finally frightens the heterosexual community enough that they get off their butts and start dealing with it, then we, the homosexual group, are in grave danger, because when the real danger comes, that´s when the backlash comes. Gay bashings already up through the roof, I think…

Robert said that they could find themselves in some kind of internment, possibly quarantine, as he said, there were many ways. But he wondered if they would do as well among them selves, as the Japanese had done, or if they would fall apart.

• And the key to that really is… how mature… our institutions are when we get there, because the Japanese had centuries of family, they had decades of isolation in this country in which to build up associations which they could then transfer in to the camps and things. I did a lot of reading about this.
• Would you go freely in to a camp?
• It would depend, it would depend of a lot of things. If I had a lover in the camp, my lover, without a doubt.
• You would not fight it? I mean if he was not there, would you not fight it?
• I would avoid it… at some point I probably would resign my self to it.

Robert talked about what it could be like, with medical attention, no shortage of food, a functioning society where one could live, even make theater etc.

• I mean, we are in no way looking at… the kind of death camps the German´s meant. I think the model to examine is… The Japanese-Americans, and the foreign nationals in this country.

Robert suddenly said: Holy Cow! Look at this!

He suddenly saw someone that had been in a group as Robert; they had taken care of a man with AIDS.

I asked Robert he could tell me more about some of the people he had been a volunteer to.

• Some that have meant something special to you.
• They´ve all meant something to me… See, who will I talk about? I´ll talk about… two really positive experiences, one of which was not a SHANTI experience, and one… sad experience. I won´t say negative, but sad.

Robert started talking about his first client, Tony, a man from Great Britain. The man he had just met, Jim, was part of the team that had helped taking care of Tony, they were friends. Robert thought this was in 1985.

• Tony went in to the hospital with Pneumocystis in November, got out at the end of November. Did not go back to the hospital over night again, and did not die until June.

We had a practical support volunteer, an emotional support volunteer for Tony, a practical support volunteer and an emotional support volunteer for Tony´s mom. We had volunteers from other agencies, and… for eight months we kept Tony at home, where he maintained his dignity, where he wasn´t deprived of… his own enfranchisement, his own rights, his own powers as a person.

When you are sick, whether its AIDS, or whatever it is , you lose that power, those decisions are taken away from you. You can´t eat what you wanna eat, you eat what you are told to eat and so on and so forth. Well, we avoided that with Tony, we kept him at home.

Robert said that in the midst of all they had wonderful times together, they ate Indian food, went out and ate Indonesian food.

Tony, who was Polish nobility, was an executive of the Bank of America, ”advertising type of person”.

• Had a little home, nice little car, was… I mean… Just in the process of doing it – the American dream. And he had this house that he was renovating . But then he got Pneumocystis.                                                                                                                                                                                                                                                                 For two weeks Robert took him to the hospital every day so he could get Pentamedine.
• He would lie and they would flush that stuff through his system for four hours. But he didn´t stay in the hospital, we brought him home.

Tony got worse, in to a period of real wasting.

• And with that came incontinence. And for… close to a month Tony would not let me clean him up, only his mother could clean him up. And then one day… friends had arrived from Great Britain for a visit, he got excited, lost control of his bowels, and… he let me clean him up.

Now… let me back up a little bit… I used to think that if I got AIDS I´d kill my self, just right away! And then I met all these people who are having all this great life, after diagnosis, so I said, Well… that´s not the time to do it… obviously, so then I picked this… next obituary time, when I´m bedridden.

Now, Tony and I would sit in his bed for hours, laughing at Marx brothers films… so I said: Wait a minute, plenty of quality time left after that, so let´s just adjust our calendar a little bit. So then… I decided incontinence, I said I don´t wanna subject that to anybody… But on that day… I have to take a minute here, it´s a very powerful memory for me – and here Robert almost started crying – ah… on that day that he allowed me to clean him up… it was like… the greatest gift that a person could give another person, is to… be that vulnerable with them, to be that dependent… So I decided that… maybe incontinence isn´t gonna be where I check out.

It was very difficult to hear the rest of what Robert said there, but he talked about his right to check out, about personal growth and being smarter through the experience with Tony.  And he continued to talk about him, and there was ”A nice button on the Tony story.”

• Tony was… opinionated, and… aggressive in his exercising of his estetic, his taste… and the last thing he did before he died… Some workmen arrived to repair a skylight in the kitchen, which was leaking, and he gave them very specific instructions about where they would find the ladder, and where on the roof it was ok for them to walk, and where it was not… and how it was to look when it was done – and he died.

And to me… to me that was great, because… he was in charge, ok? He wasn´t some helpless man strapped to a machine. He was in control of his life, he was making decisions about his home… Given the kind of person he was, and the life he led… no better way to go.

• And he died there, after he had said that?
• Within minutes of saying that, yeah. I think that´s wonderful. I think that´s a beautiful story.

Robert wanted to tell me about another person, but I wanted to hear more about Tony´s mother, Joan, first.

They had sold Tony´s house and his car, and they had had a few garage sales, and when all was done she went back home.  Tony had been cremated, and she brought his ashes to Great Britain.

Robert and Joan were still in touch, and he would help her if there were problems with bank accounts and things.

• Is he buried here?
• Ah… he was cremated, and she took the ashes back to Great Britain.
• He didn´t have a lover?
• No… Tony was a… Have you ever heard the term a-gay?
• No.                                                                                                                                                Robert laughed a little.
• Getting a big education here. An a-gay is a person who wears the very best clothes, goes to the very best clubs, has everything… Everything is just so! And… my experience is that people who focus heavily on those kinds of things, don´t bond very well, they don´t join well. And Tony was very much an individual very much complete into him self, as far as I could tell. Certainly in terms of his intellect, in terms of… sense of his own value. At no time did he ever question his own… validity.                                                                                                                                                                                                                                We talked about the different stages, that Elisabeth Kübler -Ross talks about, grief and  bargaining  and so on.
• Did he accept?
• I don´t think he ever did, no… No I don´t think he ever did. I don´t know that I´m ready to, I don´t know that it´s necessary. I don´t know that I want to.

And here Robert quoted Dylan Thomas ”Do not go gentle in to that dark night”…

• I don´t know that it´s necessary.

The next client that Robert told me about was Lwayne. This was a man that Robert knew privately.

• He was a small black man with perfect taste and a fierce determination to get everything – to have it all.

Lwayne had been sick for a long time, for two years, and during that time they were expecting the news, but it didn´t come. But suddenly it came, and by that time he had developed several illnesses.

• CMV, that makes you go blind. He also had… KS in his lungs, and several other things.
• You can get KS inwards?
• Oh yes, oh yes, it´s not just on the skin. So… shortly after Christmas 1985, twelve of us met in his mini studio  apartment, and he was… it was clear that he was too weak to be left alone. But he… he didn´t want to go in to hospital, and so… the twelve of us, we ran the gamut from leather queens to a-gays, and everything in between, including a heterosexual couple.

And we put together a list of responsibilities, like a calendar, and we broke each day in to three periods, and then we just signed up for a shift, so… For a little of two months… Lwayne was never alone, unless he asked to be.

So that every single night there was somebody there, sleeping in a sleeping bag on the sofa usually, so that if he woke up and had to go to the bathroom, or needed something, there would be somebody there that he knew… that he trusted. And for two months, we kept it.

Here Robert almost started crying again

• In that time… in those two months, sleeping over and waking up and making a pot of coffee for the next guy; the a-gays and the leather gays and the attitude gays and the straights, we all… we… we really fused together, we became a team, we… developed trust, we learned each others weaknesses and how to compensate for them, we just became… cohesive…                      And Lwayne… towards the end we had to carry him from his bed to the toilette. He never was very big anyway. I remember once literally carying him like you´d cary a baby, with one arm, and just sort of keeping him balanced. He was just… nothing… ah… after he died.
• He died at home?
• Ah… these are the success stories, to me. We were all there, not when he died actually. We went home… We were there 24 hours practically, we all decided to go home. We left the hospice worker there – a wonderful guy – and he called us the next morning to say that Lwayne was gone.  And we all came back.

They did the things that they had to do, you call the medical examiner and this and that and the next, and then after the body was gone, we just sort of looked at each other and we said: Well… lets empty this apartment, lets get this stuff taken care of, then we don´t have to come back.

They emptied the place in 20 hours, ” I mean, just gone! ”, and a week later they had a party. One of the men in the group had a house in the Berkeley Hills, so they met there and talked, and reminiscend…

• And it was almost as if… we were decompressing as a group as the party progressed, and so we realized at the end that we would never again meet as a group. We still… some individuals still connect with other individuals, but as a group our job was over.

We all felt very very good about what we´ve done, still do, that´s how I want mine to be. I don´t want to be in a hospital. I want it to be… I don´t have to have… you know, people waiting on me hand and foot, but I´d like to have a friendly face…

Here a car drove by so the rest was drowned in sound, but for the last words about that:

• I don´t know if there is a best way to die. (Robert laughed a little) you know… certainly there are worst ways than others, but…I was gonna tell you about Richard. Richard was my last SHANTI client. I wonder if that´s significant,    I´ll have to think about it sometime – the last one was the sad story…

They had been matched through SHANTI, and Richard had just gotten out of hospital, and Robert went to see him.

• And… he came on to me. Really heavy. I had a little trouble with that… On the one hand, you don´t want to… there are rules against responding to that, but… he had no… no real grasp of reality, because if I had… responded to him, there´s nothing he could have done, I mean he was way too sick, but… His old persona required him to come on to me, ok… As a woman I´m sure you are familiar with hat persona. (He laughed a little, and yes I was. )

Robert said that Richard was a real two-fisted drinker, and that SHANTI had problems with his drinking. Richard had an emotional support volunteer that had reported back to SHANTI that Richard was drinking, that they had a substance abuse problem there, and they wanted to confront him about it. They asked if Robert would stand by them when they did that, and Robert said no.

• Cause who am I to tell him he is drinking too much? He may have a week left, and… As a matter of fact he had a couple of months. (He laughed.)

The long and the short was that he told the counselor to stuff it! And he fired his emotional support counselor, but I was a hero, because I wasn´t involved in all of that, so… then anybody who wanted to have anything to do with Richard had to go through me. Suddenly I´m the chief of staff or something. Well, it was wonderful! And, he never, never failed to have something fun to say to me, some little special moment that we would have, until the last.

In the end Richard drank so much that he was unconscious most of the time, and he was put back into the hospital.

• And then I became his only real connection with the outside world, because, despite the fact that he was a native San Franciscan with six or seven brothers and parents who lived 20 miles away, none of them ever came to visit him, or had anything to do with him, except one sister who lived hundred miles away – she came as often as she could. They had been estranged for years… the family.

He had a brother who lived a block and a half from the hospital he died in, and that brother never set foot in the hospital… To me that´s so sad, but on the other hand… it didn´t seem to bother Richard at all. He couldn´t have cared less about whether those people came to see him or not. Whether he connected with them or not, it just wasn´t a problem for Richard – I think that is wonderful, because it´d be a real problem for me.

When Richard died, Robert was not there.

• I … I was there until an hour before he died. I was … I was so hungry (he laughed a little) and… so… I knew he wasn´t gonna make it through the night, and so I said my goodbye´s. He was nowhere near conscious, although I believe that… there´s conscious and there´s conscious, you know, I believe that he knew I was there, that I´m sure of, cause he… found and held my hand, and… I feel that I made my … peace and said my goodbyes. I don´t feel a sense of loss with him, for not having been there. I´m passed that. I don´t need to be there.

After Richard´s death, Robert and the sister cleared his home. Richard was cremated and she brought him with her.

Robert had a photo of a young Richard. He was on the cover of a gay magazine from the 50´s. Very rare. And he looked like James Dean.  He had been 19-20 at the time, a beautiful man. Robert also had a photo of him from his last years, and he reminded Robert of Rock Hudson.

Back to Robert.

I wondered what he was going to say to his parents, when he came to visit. Robert laughed.

• I don´t know. Well, the first thing I´m gonna do is… is clarify the relationship that I have with Bob, and say o k… it needs to be said. I need to see you hear this, o k, and then from there… I´m gonna tell them about my own health status, and… that´s as far as my agenda goes.

Robert thought they might want to say something after that, but he really wanted them to understand.

• I want… I wanna make sure that they understand the exact and specific and deep nature of the relationship that we have. I wanna make sure that they understand that… when I am too sick to make my own decisions, he will make them, not them. It´s not a rejection of them, it´s a reflection of how much more important to my daily life he has been for the last 20 years.

You know, I call em up on the phone, I go home and impersonate the kid that used to live there. I behave like what they expect me to be, not what I am. Whereas with Bob, I am exactly who I am, so he knows who I am, so he is in a much better position to know when I want the plug pulled or whatever, than they would… also… he is… the most important person in my life, not them.

I love them, you know, but if it came to some kind of choice, which I can´t imagine, I mean my parents are just not that way, but… if it came to a choice, he would be the one I would chose, no doubt about it. But it´s not gonna … that is worrying about phantoms that don´t exist.

Robert had a lawyer friend and he was going to sign a Durable Power of Attorney, and a will.

• Not that I have anything. (He laughed. )

I asked about the ”checking out”, had he decided a date? No.

• When it comes, it comes.
• Maybe it´s not gonna be necessary.
• Wouldn´t it be wonderful, (if) something came along…

Robert said he didn´t knock people who believed it would, but the said he would rather live with a ”realistic, if somewhat pessimistic point of view and be… in charge, you know, still in control of my life”.

• I´m a very opinionated person… I have a very strong personality, that´s the gift of my father, and… just like Tony… finished his life by doing what he does, giving orders (we laughed), I wanna finish my life doing what I do, expressing opinions… you know. And I think I will.

 

Robert talked about friends he had lost contact with, for example a friend from New York. He had heard that she had won an award for a poem she had written that he was in, ”Missing friends”, and the last line in that poem is: ”once I thought I saw Bud Pitman…”

• That was the last line… in the poem, and… never been in a poem before.
• That´s nice…
• And that´s because of the crisis, because it´s… I´m looking at… tying things together, and… pulling things back, and… making things whole.
• Is that ”unfinished business”?
• Kind of, yeah. Kind of… and that´s a good thing. We were talking before about the good things that comes from this crisis. That´s a good thing.

Another good thing is that… as a group of people, we are loving and gentle with each other, when we never were before… We´re capable, we´re capable of great caring, great… great pride, great strength.

Robert said that he felt more safe with gay men, than in a group of straight people, safer than he had ever felt in a group of gay men before.

• And it´s because we have this incredible enemy, so we don´t have time to be bitchy with each other, we don´t have have time to… play those games with each other. And that´s why the people that you´ve spoken to… experience no fear of expressing their status, because… they know they are safe.

Before the interview started Robert talked about Circle the Wagons, and I asked him to explain what he meant.

• When the Western States of the US were being settled, large groups of people traveled in covered wagons pulled by oxen, with everything they owned in the wagons. And sometimes, as they were traveling alone, they were attacked by Indians, and… The defensive strategy was to pull at the wagons around in a big circle to create a safe haven inside for the families, and then the wagons could be used like a barricade from which to fight with the Indians and fight them off. And so that´s the origin of the expression, the Americanism ”Circle the Wagons”.

And that´s what we´re doing in San Francisco today; we have the wagons circled.

But he was worried about straight people, who he said didn´t get it, that AIDS could affect them too. Who didn´t think they needed condoms. It scared him.

• And they´re gonna start dying, if they don´t start doing it, and I don´t know how to get that out.

I wanted to know more about Tony´s mother, Joan, that had come over from England to take care of him. She had been around 78 years old then.

• How did she take it?
• Well, she was… very close to a nervous breakdown at the end, because of the work she was doing, and she was working around the clock – she did three loads of laundry a day… and she was pretty shaky. As soon as … as soon as Tony died she came together. She was shaky still, for a day or two, but then it was like – got down to business. Once the pressure of ”when is he going to die”… was over, she got better.

Robert and Joan started taking care of things, and then it was over. There was no funeral.                                                                                                                      –

• Oh no. Tony´s mother had no use for the church, no use for the church. She is vegetarian, I told you, a free thinker!

Robert himself had had bad experiences with funerals and memorials, and he told me he had walked out of several, as what was going on was ”polluting his memory”.

It was often the things that were said during the services that he couldn´t stand, he mentioned one friend who he said was a ”gentle, loving, wonderful guy”, and when the Baptist preacher got up and talked about guilt and sin and redemption, he got up after ten minutes and left, and he found out the day after that half a dozen had followed his example and left.

• So now I don´t go to em, unless I am pretty sure and know what I´m getting in to. (He laughed.)
• What would you do?
• For my service? I don´t know. I´ve started to think about it since I had these bad check ups. Ah… whatever it is, it isn´t gonna be about religion… and whatever it is, it will have a lot of music

He wanted singers and musicians to get together and play, and there were some poetry, that was important to him.

• Mostly, what I´d like to do is have everybody just get together, get stoned, have a good time…

Robert had heard through the grapevine that his mother had bought a plot for him in Ohio, but he had written to her that she should really try to sell it, because he had tried for so many years to get out of Ohio, and he did not want his body returned there when he had died. And he was going to be cremated.

I asked about the ceremony I had heard about, when people go out in a boat and scatter the ashes with rose petals and so on, but that had become so expensive that there had to be five parties on the boat to make it affordable, and every party would get ten minutes at the front of the boat, and then get out of the way for the next party. So… He had mixed feelings about it,he´d rather had his ashes spread from land. He had had some good times at Lake Erie in Ohio, and he thought he would have some of his ashes sent to a brother who could throw them in.

I wondered how I could sheer him up again, we could get a chocolate or something?(We laughed.)

We were one our way to Open Hand in the Trinity Episcopal Church, but we started talking again.

Robert was talking about going to the theatre when one of this shows had closed, and the set for the new show was not up yet.

• And I go in there, and I sit and I look around, and I… think, my God, there was this entire magic world in here yesterday, and now it´s this empty room, and it´s cold and it´s… it´s uncomfortable, and yesterday it was a magic place.

The tape broke, and he picked up again:

• We were talking about how similar the emotional bonding is, between a group of caregivers taking care of a person with AIDS, and a… theatre company, and how…                                                                                                            While you are putting together a show, or taking care of a sick person, you are intimately and intensely involved with these people… to the point that… you forget that there was a time when you were´nt. And then when the show closes, or the person dies… suddenly your… your whole reason is over. Your reason for being together is over.

And here we stopped and Robert took me to Open Hand.

Towards the end of December 1987 I received a letter from Robert. He wrote that he was OK.

”I´ve been taking an egg lipid product called AL721 since early November and I think it´s helping. I´m gaining weight for sure. I think my energy is better, although the last few days I´ve been pretty tired most of the time. ”

Robert and Bob had gone to Washington, DC to the Gay Rights demonstration in October, ”It was wonderful”, and they had also seen the NAMES projects Quilt. He found it very moving.

”The quilt was recently laid out on the floor of Moscone Convention Center here in S.F.  I went determined to look at every single panel. It took me more than three hours.”

He wished me a Happy New Year.

 

 

 

Sometimes something unexpected happens.

In the middle of November 2022 I was contacted by one of John´s relatives, Bill Dunbar.  He wrote:

”Hello, Ms. Garde!

I am one of John’s nephews. He was a father figure to my sisters and me… and all of my cousins! No uncle was ever loved more than Uncle Johnny. He was SO silly… and caring and loving and affectionate and generous and honest. We all miss him terribly and talk about him constantly — even 34 years after he died. His absence is particularly difficult for my mother who could not have been closer to him. They were six years apart and she describes how throughout childhood and into adulthood Johnny would take her hand whenever they walked together… even in a grocery store. I’ve attached a photo from 1965 … you’ll note  they’re holding hands!

Uncle Johnny helped so many young men with AIDS whose families had abandoned them, and he introduced them to ours. It was a tragic but very important time in our lives, particularly since my dad had died suddenly and mom moved in with Johnny. They did everything together… until AIDS struck.

Uncle John touched so many people throughout his life, so it’s no surprise that he made an impression on you. We’re grateful you spent time with him… he was a character!!

I know my mom, my sisters, my cousins, and I would love to see your interview with him… is it available somewhere?

Thank you for your time. Please let me know if there’s anything I can do for you.

I try to do my work in a chronological order, from when I came to San Francisco in August 1987, but decided to write about John now, because his family contacted me. But it took a while, because I suddenly got pneumonia. Meanwhile we made friends on Facebook.

Suddenly Bill wrote on FB that his mother, Josephine ” Jo”, Dunbar Snow, had passed away,  at 96 years old.

When I came to San Francisco in August of 1987, HIV/AIDS had been going on for years, and I met John LoCoco at a workshop for hospital staff and volunteers, ”Care for Caregivers”, where I was allowed to be an observer.  It was lead by Drama therapist Raymond Jacobs from New York.

It was a moving and interesting workshop, mostly about grief.

Some caregivers were stuck in grief, and could not cry – they had seen so many patients and friends die. Some of the participants were HIV-positive them selves, and could clearly see what was to come. Some knew so many in the AIDS Ward they were working in, that they did not know which room to go to first.

I was allowed to take part in some of the exercises, and it was during one of them that I noticed John.

We were sitting in a circle and we were asked to talk about our shoes; what they said about us. I don´t remember what I said, but I remember what John said; he did not know if he would walk in them so much longer, as he was sick.

We also talked about ”five years ahead”, and John said he didn´t know if he would be around in five years. During one of the breaks I asked if we could talk, and he said yes.

John was going to meet Pope John Paul II, the very next day, as the Pope was visiting San Francisco. John had been invited to meet the Pop together with a number of people, and he was invited as a Catholic person with AIDS.

We met a week later at the Pacific Presbyterian Medical Center where John had been a patient, and where he was now active as a volunteer. He showed me around the hospital, and took me to the Planetree unit, where he had been treated, and then we sat down in a small room to talk.

When I met John he had survived 3 bouts of Pneumocystis, Tuberculosis and Kaposi´s sarcoma in the lymph nodes. (John did not mention which pneumonia he had had.)

One of the episodes with Pneumocystis was specifically serious, it happened in March 1987.

• I was at the hospital for almost 6 weeks and I was not supposed to pull through. My family came and said goodbye. I was down to maybe two or three days to live, and something in my system was shutting down. And then something happened.

John had showed me the room he had been in at the Planetree unit.

• This Planetree is quite unusual. It´s holistic, and they believe in vitamins and hugging, and you know, with all that care they pulled me through.

John thought that if he pulled through this time, he was going to do more for others, so he got involved in the volunteer program and went through the training.

• So, that´s what I´m doing. I´m volunteering working with patients that are newly diagnosed.

When John showed me around the unit, he handed out a paper to the patients.  It was a restaurant that offered free gourmet lunches to the patients; sandwiches, hamburgers, pasta. And Chocolate Mousse.

• What you saw this morning was primarily getting the meal thing out, but then we go back again, and we sit down, if they want to sit and chat – see what we can do in regards to family, or… anything they need, letter writing or wills, or, anything that they need… It´s very rewarding.

John also did similar work with Most Holy Redeemer, the Catholic parish he associated with in San Francisco, that had an outreach program for People with AIDS at home, with emotional and physical support.

• And… We have drop-in-sessions for parents who need help. I find that the most… rewarding. Not only working with the patients, but when they are lucky enough to have a parent that´s interested in them, in their well being, working with that parent… We have quite a few of the young people here, their parents reject them, they don´t want to be part of their suffering, and it´s embarrassing to them, and so… They just leave the child or they ship them to San Francisco, and they want no part of it, and that´s not uncommon. We are lucky in San Francisco to be the prototype.

John had worked with the media during the last two weeks, because of his upcoming meeting with the Pope, and he found that people were very impressed with the work that was going on in San Francisco, and people came to San Francisco from other places in the US to get help.

• We have people from New York. I visited two last week who came from New York to San Francisco for their care and their support, cause they felt it was more sensitive here… So we´re lucky. I´m very proud of the city

John had worked in real estate, and before that he was a counselor for about 12 years.

• I counseled young people with emotional problems, young married couples, people who were heavy in (to) narcotics, their families. I worked through the Arch Dioceses in Orange County, which is between Los Angeles and San Diego.

John had never had any problems with him being gay in the Catholic church. The Arch bishop, later Cardinal Timothy Manning, knew his partner, and it wasn´t a problem. He had appointed John as one of the first lay people to distribute communion, about 15 years ago.

• You know working with young people, some were gay, others were´nt, and that wasn´t important. The main thing was what we did for the young people, so I´ve never had any difficulty. I never worded out  I´m gay, and I´m working with young teenagers, or whatever, I never entered in to that picture.
• They didn´t bother you about it, anyway?
• No, very supportive. And the interesting thing now that they know that I have AIDS… and I´m back in San Francisco, the communications have just been wonderful.

Some of the young people that were 16 and 18 when he met them were now in their thirties, and would come to visit, and Cardinal Manning had written to John a couple of times.

John had had a partner for 22 years, but that changed when he suddenly came down with AIDS. He had thought the relationship was monogamous, but…

• I really fought the fact that I had it, cause there was no way I could have gotten AIDS, cause I was only with one individual for that many years, and my blood test had come out negative, not positive. Then they said I had pneumocystis, and I still couldn´t understand it.

Four months into his diagnosis he had reason to look into his partners dresser to get something, and there he found a ID card for Club Baths, a chain of gay bathhouses in the US and Canada.  He confronted his partner about it.

• And he, through business he had to go out of town a lot, and he said it was just when he was out of town, and it was no big deal. Well to me it was, because… I ended up with AIDS, and found out he was a carrier. He has AIDS now himself, but he was a carrier

They broke up for a year and a half, because John was very bitter.

• When I was dying… I was still very bitter regarding him, and when I got well, this girl I know said that God didn´t want me, because I was dying with this hatred, and that was foreign to my system.

Here John joked about it – a friend of his had said: ”Don´t change! Keep on hating him, cause then God won´t take you!” John laughed.

• But after I got out of the hospital, and all the Planetree nurses talked to me about it, you know the once you met today (here he mentioned two, Carol and Becky) you know, if God is forgiving, why should I not be… more understanding,

John rented a little cabin and went and did his own retreat for about a week, analysing the whole thing, and when he came back he called his partner and he moved back in.

• And is it ok now?
• I still have a little… I don´t talk to him about it, but I still have a little… 10 %… you know a little resentment, but he´s having a difficult time… His AIDS has affected the back of his brain, so he.. will become incoherent, he´ll need custodial care, pretty soon.
• Does he have dementia?
• A little bit, yeah. He has different days, some days are really good, and then – it´s affected his lower extremities, sometimes he can´t walk too well, but he´s …

We agreed on that it was good that they could be together, considering that they knew each other so well.

• So how was it to start working with other patients?
• Sometimes… it´s very rewarding, sometimes it´s very rough – you know you get attached to some of the young people here.

One who was really young, 25, was Eric… He had KS and quite a few lesions on his face, and it´s gotten to his eyes. And when you´d first go in, he would sort of turn the other way, not to look at you. We became very good friends, and from then on when I´d go in to his room, he´d just brighten up in a big big smile.

He had checked out of the hospital to go home, and I saw him at Short-stay on Friday when I was having a transfusion, and the following Monday he is dead.  And… it really gets to you. And there´s maybe four or five in the last… month, that we´ve lost… that´s hard. It´s not that you´re just going through it your self, but it´s going to happen to you too, it´s just that…

John compared it to a battlefield, to be fighting a war, and you´d hear about people dying, and that the man next to you, on the left or right hand died, and that it was going on, constantly.

• It´s nothing else but a war, and this particular enemy doesn´t take any prisoners, you know, so you have to fight, you have to keep your weapons… ready to fight. And that´s what we do here, is trying to… give that … support to people, not to give up, cause people can die from a cold if you just give in to it, but they need constant support.

When you greet the patients, they are very receptive, they are very reaching out to you, more so than if you were an orderly or an intern or even a nurse, because you are going through it with them and they can relate to you when you are there, running around the hospital and they see you there, and that gives them a good… feeling, you know. If this guy went through it, and here he is trying to help us – so that´s a good feeling. There has to be more volunteers, within our own ranks.

I asked John about the five years we had been talking about at Care for Caregivers. He had said he didn´t know if he would be around.

• Do you plan for not being around, I mean how do you…
• I don´t really feel I´ll be here five years from now, unless something… really a miracle happens… I really do live from day to day, and you know people can say they do, but I really do. I catch my self from planning things six months from now, like I used to. I was the kind that would sit down and write things out for the next eighteen months, I don´t do that, no…

John had two nieces that had been pregnant, and around Christmas he had thought to him self that he hoped he would be there ” I wish I´m here when the babies are born”, and he was, they were both born.

• I don´t know… and I´m not being dramatic, is that none of us know when you go in to a war zone what´s gonna happen. I… I thought… You know they said you are going to last between six and eighteen months. Well, I´ve passed my eighteenth month… I don´t know, I really don´t know. I hope like the rest of us we´ll be here for a long time, but I don´t see how. I´m sort of wearing down, you know, my self, physically. I have like more night sweats, I have to go for a MRI, which is a brain scan.

Many things had happened to John and he had often thought ”Well, this is it!”, and then it wasn´t.

• So my luggage has been packed a few times, but the porter didn´t show up, you know, so… I feel that each week, by the end of the week if I know that I was able to touch somebody´s life… if I can do that each week…

Those parents, you know, that we met today… (it was a couple who talked to John briefly) who are just… reaching out, without saying it, but just saying: ”Help me, help me, I knew my son was gay, but I didn´t even know he was sick!” And here is this kid that´s had ARC for… it looks like he has full blown AIDS now, and if you can just… They might not know who you are, you know six month´s from now, but at the time, when they are so… vulnerable and they need help, if you can just touch them, I think it´s worth it. And that´s why I´m here a lot…

I have a loveaffair with half of the nurses around here, because I know what they give. They are such an intricate part of a patient´s pulling through, you know, not treating them like cattle. The nurses here are outstanding.

 

We talked about the worry that AIDS would be turned into big business, and here he mentioned SHANTI as an example, (where there had been problems), and as I write that I remember that there were demonstrations about this – but I don´t remember what year – ”Take back AIDS” from the people that used AIDS to make money, and careers.

We also talked about compassion, that it must be constant, even though there were now so many that were sick.

• Yeah, there is… two years ago… when I almost, when I was diagnosed, it was: ”OH! He has AIDS!” And now we have to watch when there have been thousands of others, when you hear of a new person getting AIDS, on September 24, 1987, you get ”Oh, there´s another one! That´s too bad… ” You have to show the same compassion.

John talked about the thrill when a child is born.

• You never get tired of new babies coming on earth… that same compassion has to be there when a person is diagnosed and he´s dying, or that he has AIDS or whatever… Sometimes we come here like today, Thank God there were´nt many, but two weeks ago there were 18 patients, and two or three volunteers. We all said, ”Well there´s 18, so we´re gonna work a little harder, everyone needs our attention”, you know… It´s just… it has to be consistent and constant, because any person going through this, it´s a shock when you find out, you know, here in the US or in Sweden or in Italy or where ever, it´s a shock, and that person needs a lot of understanding.

I wondered about John´s family.

• My father passed away, my mom is alive, and she´s quite elderly, but I have my brother´s and sister´s who I´m very close to, and they are going along with all this with me. And my nieces and nephews, who are in their late twenties or early thirties now… are so much a part of my life, every single one of them, from Seattle down to Southern California.

When I was ill last, they were all here. They were hugging and saying ” You are not going, uncle John, don’t go, we need you! ”

And they follow up, and even with their children now… I have become like their patriarch, and they are very understanding about all this, and very supportive and very loving.  So I´m lucky…

So I hear of kids that don´t have that, I really have empathy for them, you know, I really… You know when your loved ones turn you down… So that´s why I´m given so much love, that I have to get rid of it, cause I don´t have room for more. So, I´m giving it to the strangers… and that´s been very rewarding.

We had come to the Pope, John Paul II.  John had been asked to see him by one of the priests in Most Holy Redeemer church, Father/Reverend McGuire.

• I didn´t want to do it, cause I don´t really politically go along with what´s coming out of the Pope, out of Rome. And… my pastor said: ”You know John… you might help ONE person with all this, because of the exposure. And I thought about it, and I did it, and… It came to pass right away. I was interviewed at CNN., which is a cable national network, you know it´s a quite a lengthy interview, and about four days later they called and asked if I would accept a call from a lady in New York, and I said yes.

She called to let me know her son was dying of AIDS in a hospital in New York, and he had refused to see a priest, and then he saw my little segment and told his mother to call a priest.  And then, a week later she called to say that he had died, and the day before he died he told her to get back to me, to let me know that the church had embraced him, so that was worth it… You know, that was worth it.

John said he was extremely thrilled, knowing that he represented gay men and women throughout the world.

• And then also those of us who have AIDS. So that was the pride, the thrill…

John gave 33 interviews during this time, also together with others.

• So I thought we were able to express ourselves… People realise that there are different facets of heterosexual life… There are extreme people, there are quiet people, there are working people, politicians, whatever, you know married people, and all different how they lead their lives, different type.

But the average person thinks of homosexuality as one lump, we don´t have different facets, we are all extreme homosexuals.

So what this did was to allow us to show the public that we are… your doctors and your nurses, and your teachers and nuns and your missionaries, and your politicians and judges and your grocery clerk, and whatever, AND by the way, they happen to be gay.

They know that in San Francisco, and they know that in New York, but they don´t know that in Idaho or Georgia. And all this Pope-attention allowed it.

John had certain things he wanted to tell the Pope, about things he had learned in school, as he grew up in San Francisco.

• I was not taught to fear Christ, I was taught to love Christ and to follow him, because he fed the hungry, he took care of the sick, he clothed the naked, his best friends were prostitutes, he embraced the lepers, and he attended the dying – and that´s being Christlike.

So when I was able to talk to the Pope, I told him that I prayed that he would be more Christlike… and he lifted his hand and touched my cheek, that he would pray for me too.

There were things that John was disappointed with, for example that the Pope´s speeches were written back in Rome, before he came to San Francisco.

• But I feel that he had to see… what love and compassion is here, and then when he gets back home, he´ll have to register and digest some of it, and I think he will. It´s done an awful lot of good for the church within the United States, because of what we were able to show him.
• You said it was very moving.
• Mm, it really was… He has a lot of charisma, he really does… He reminds me of a stirring parent, well, like my father was from the old country, Italy. My mother and father are from Italy, from Sicily, and they had rules: This was it!  He had all the love, he would kiss me every night and tuck me in bed, even when I was 20 years old – still tuck me in bed.

But he had his rules, so there could be some things that I knew he wouldn´t like, so I wouldn´t tell him, and I´d use my own thought.

John lead his own life, without letting his father know that he was breaking the rules, his father´s rules.

• Well, the Pope is that way. He has some of his old world rules, but he hasn´t caught up with 1987, you know with birth control and women´s rights, and women being a part of the clergy, you now, he hasn´t caught up with that yet, so… I found him to be rigid, but compassionate, you know.

John talked about that the Pope came from Poland, and that he was very conservative, and he then referred to a previous Pope.

• I think if we had a Pope John XXIII now, things would be different, there´d be more compassion and more… love coming out.

When the Pope was in the church, and had met the AIDS-patients, among them a five year old boy that he held, they wanted him to go to Coming Home Hospice, and the Pope wanted to go, but the police and the security said no.

I wondered what John would say to people who were working with AIDS.

• You have a lot of love and compassion… to be doing that kind of work… and you might get burnt out, so you´d get away from it when you have to, recharge your batteries and go back.

But if you have the ability to embrace and to love more people, it´s such a rewarding… and giving life, cause that´s what you are doing – you are constantly embracing those who are suffering. It´s almost as if you were – you don´t have to be super religious, but if you were… a nun, or a monk or a brother or something, that you are dedicating your self to this.

It´s not normal, it´s not a normal life, you know, you walk away from it, but it´s still on your mind when you go home and go to bed, wondering about that person.

John wanted to put all the people he knew who were helping people with AIDS, in to a xerox machine, so they could get more and more of them. Not only young people, but older men and women.

• I met five or six mothers who´ve lost their sons with AIDS, and they´re out volunteering, helping others, and even if… it´s not a mother who lost a child, I think there´s a great need for older women to volunteer, to be that mother image for these kids, to hug them and embrace them. I just think it… you know, it can´t just be young people or super sharp guys or whatever, it´s gotta be all kind. But when you see an older man and an older woman volunteering, who are heterosexual, that really grabs me, I just think that´s marvelous. You know they… bake cakes and write letters and hug, you know all that good, but… you know it´s rough.

John talked about reactions from partners who are not involved and who don´t understand that you  give so much attention to strangers, and not to them.

• So I think there´s a lot of hardships that are involved. We need, more seminars, we need getting together, we need more conferences to share… But if you are a volunteer and it becomes routine… then you should get out of it.

We had come to the end of the interview, and I wondered about Unfinished business.  Had he taken care of things? And John had, indeed! Everything was arranged.

• I took care of that sort of in the beginning, so I wouldn´t have to worry about it anymore.

John had already paid for his funeral arrangements.

• What are you going to do? Will you be cremated?
• I´m having a Memorial mass at Most Holy Redeemer, and … I have the program already done… I had it printed. My niece has it.
• Where will your ashes go?
• San Francisco Bay, near the Golden Gate Bridge.

John said he had a whole bunch of nieces, but it was one of them who was going to spread his ashes. He said she was very loving, unpretentious, always there, he didn´t give me her name, but she was his buddy.

John was going on a visit. He had a nephew who had named a child after him, so there was now a new John LoCoco, three weeks old.

• And that´s quite a thrill.

I said to John that he was blessed, and he agreed.

• I am, I really am.

I wondered if there was anything else he wanted to say, and he said that it was wonderful that I was there, absorbing all of this.

• Love and emotion… and knowing that we´re trying to share it with you, and then you´re gonna bring that back home to your people. I think that´s very rewarding.

Before I left for Sweden, I found out that John was ill and back in the hospital, so I went for a short visit, and right then his partner Don was there, and we said hello.

I wrote to John, but I did not hear from him. Eventually I called him, on June 21st, 1988, and found out that his letter to me had been returned.

I have been stalked by a mentally sick person, and I had told the post office that my address was not to be revealed, should anyone ask. That message was understood to mean that no mail was to be delivered to my address, and it was through John I found that out.

When I spoke to John he sounded very sad. He had had his sixth pneumonia.

• I don´t know why God wants me to go through this.

John did not live with his partner any longer.

John said that he was taken care of by Most Holy Redeemer and by his loving family; nieces and nephews, that would come to him.

• You are a loving friend to call. God bless you.

Those were actually the last words spoken to me by John.

I never knew the full name of John´s partner, until now through Bill, and I found his obituary among the Bay Area Reporter´s obituaries. He passed away August 8th, 1988.

 

I returned to San Francisco in October 1988, and immediately started to contact people.

I follow my notes here, from October 17th, that turned out to be a very important and dramatic day.

There is a short note: ”John LoCoco, where are you? No one knows. ”

”I looked for John LoCoco in vain, and found out through Most Holy Redeemer that he was back in the hospital, and that they did not think he would make it this time. ”

I was staying with Jan Baer again, in Bernal Heights, and did not know how to make it really fast down to town, finding a bus, trying to explain where I wanted to go, it was hopeless – so I stopped a car, explained the situation and asked the driver, who happened to be a neighbour, if he would take me to the hospital, and he said yes. I was so upset, that he told me I had to calm down if I wanted him to take me there. I did, and he actually drove me to entrance of the Presbytarian, and I thanked him so much!

”I cried in the elevator, scared I had come too late, and I almost ran passed the rooms, but I couldn´t find John. However when I asked about him, I was shown in to one of the rooms I had passed by, and I did not recognize him.  He was half his size, on oxygen, and he looked totally different.

His family was there, nieces and nephews, talking to uncle John that he has meant everything to them. They said that he has been like a father to them, more than anyone else, that he has been so helpful to everyone, and traveled to them if there had been problems; he has always been there for the family. ”

The family left the room for a while, but he had a sister there, and it took me some time to realise that she was not his sister, but a nun, Sister Cleta Herold dressed in private clothes. It was Sister Cleta that made John aware of that I was there. He was lying on his left side, and I sat in front of him. His eyes were almost closed.

”She said that he such a strong heart that does not want to give up. She told me that he has ordered his Memorial service to be on Saturday, and has arranged everything, as if he knows he´ll be dead by then.

John had a volunteer. ( Or maybe he was one of the volunteers at the hospital who took care of many patients, like John had done.) He seemed to be in a hurry and said to me that John had been given a lot of Morphine and Valium, but that he hears what one says, so I could talk to him. Then he leaned over and talked to John and said that he was going for lunch, and then he said: ”Let go, just let go… Go to the Light John! Go to the Light!”, and vanished.

I talked to John, I said I was glad to be there, and I gave him a picture of the Madonna that I use to carry around in my wallet, that sister Cleta put up on the wall. She said: ”Pia has brought a picture of our Blessed Mother”. She wanted to raise up his bed, and she said: ”You are flying now, right into the arms of Jesus, that´s what you are doing now John, you are flying right into the arms of Jesus.”

I had an interview to do, so I had to leave. I ate something downstairs and then went up to John´s room again to say goodbye. We were alone in the room then.

I held his hand, and leaned on the side to look in to his eyes, but I could only see one, as he was laying on the side. He seemed to look straight at me, and he looked very sad.

I patted him and did not know what to say. I did not want to repeat the words ”Go to the Light!”, so I said ” If we don´t see each other again here, we´ll see each other Saturday. ”

I was told that John just wanted to die now, he had done all he could. He did not want any life-sustaining treatment, he just really wanted to die. All he got was some water.

I made the interview with one of the volunteers from SHANTI, and went home to Jan Baer, who I was staying with. I was very very nervous, and did not understand why.

”I called the hospital to ask how John was doing, and the woman who answered sounded really surprised at my question, and after a few moments of silence, she said that John had died five minutes ago. Then she said: ´Less then that, three minutes ago. It just happened.´

The family had been with him, so I asked her to send them a greeting. Maybe someone could call me?”

”Amy, one of John´s nieces called. She said John´s death had been easy, he just stopped breathing. He did not have to gasp for breath or anything like that, he just stopped breathing. And they were all there with him. ”

She invited me to the Memorial Mass at Most Holy Redeemer.

I was just stunned, that it had all happened in a few hours.

Had I not called Most Holy Redeemer…

 

The Memorial Mass took place the following Saturday, and it was very moving. Many of John´s relatives took part, among them Bill Dunbar, who contacted me recently.

The Celebrant was Rev. Anthony McGuire, and I think he was the man who talked first about John. ( I recorded the service, but did not comment.)

He had been new to the congregation, and he had had a sense of darkness coming over the Parish – he did not specify what it was all about, maybe it had to do with HIV/AIDS –  but he did not know what to do.

One day he saw a note on the board about an event with Gay Italian Alliance. There were all sorts of Catholic groups, but what was this?! He decided to go there, and he was nervous, stepping in to the dark, he thought.

”And who met me at the door, but John. Big apron on, and he welcomed me and thanked me for coming, and he introduced me to everyone there. He showed me what was going on in the pots and  pans, and he told me how happy he was that I was there, and how happy he was to be (hard to hear) Founder of the Gay Italian Alliance and a member of the Roman Catholic Church.

When I left that evening I felt like light had come in to my life, and I felt that I had been given a much clearer direction, as how to deal with the people in my Parish – was the way that John had dealt with me. With great respect, great friendliness, great hospitality and… with an insistence that as a gay man he was also Italian, also Catholic and proud of all of those. ´There was a man sent from God, whose name was John. He came as a witness, to bear witness about the light, that all might believe through him´.”

He continued to tell stories about John, and one of them was how he had held two banquets at a hotel, one for family and friends, and one for the staff at the Planetree unit at the Presbyterian Hospital, for doctors, nurses, hospital workers, ”who were astoundly wonderful to him”. ”

”A beautiful example of a person celebrating life, as life, as physical life diminished, the life of the spirit expanded and grew and drew us all in to the celebration.”

 

After the Memorial Mass, John invited us all to a pasta brunch, arranged by GIA, Gay Italian Alliance.  A joyous occasion.

My contact with John LoCoco became very personal, and I could feel his ”presence”, especially in church, for a long time, and especially around Christmas, when one could hear the words: ”There was a man sent from God, whose name was John. He came as a witness, to bear witness about the light, that all might believe through him.”

 

For a long time I wondered where John was buried, until a suddenly remembered he had said he wanted his ashes to be in the Bay, near Golden Gate Bridge, so when I returned to San Francisco in 2014, I threw white roses in to the water, not far away from the bridge.

Here is John´s Panel in the NAMES Project AIDS Memorial Quilt, where you also see the photo of John and Pope John Paul II.

 

I also became friends with Sister Cleta Herold, and followed her as far as I could. She was the one who sent me the photo of John and the Pope.

Sister Cleta stayed in an apartment at Most Holy Redeemer, as she had been a Pastor Associate there, much involved in the AIDS epidemic. I visited her there many years later. She gave me this photo.

She was becoming forgetful, she said, and was planning her funeral. She belonged to Sisters of the Presentation, and she eventually moved back to the Motherhouse in San Francisco, and I visited her there in 2014, when she was quite forgetful.

Sister Cleta Herold PBVM (religious name Sister Mary Cletus) passed away on September 26, 2016.

As John´s Memorial Mass took place in his church, Most Holy Redeemer Catholic church, I ordered a tile in memory of John and everyone I had met that had died of AIDS, at the Commemorative Wall and Fountain in the Church Garden.

It was dedicated to former pastor Fr. Tony McGuire, Sr. Cleta Herold, and in memory of former pastor Fr. Zachery Shore, on April 29, 2013. Sister Cleta was there at the time, as well as Fr. Tony McGuire and others; parishioners and neighbors.