A chapter never written – about Janina and her son…

A chapter never written…

In 1987, I was watching films from SHANTI in San Francisco, at a center for People with HIV/AIDS in Stockholm, Noaks Ark. It was different Volunteer Training sessions that were filmed, and they were often very interesting and moving.

I was not alone in the room, there was also an elderly woman dressed in black. We started to talk, and it turned out that we were both grieving; she had lost her son, and I had lost my mother.  Her name was Janina Ludawska, and we became friends.

One thing I need to add here, is that I have been very involved in the fate of a group of Survivors from the Nazi Concentration camps, that came to Sweden in the spring and summer of 1945 for rehabilitation.

Some of them took part in an investigation about their experiences, through questionnaires or interviews, and a book with some of their answers was published in the fall of 1945, ”De dödsdömda vittna”/ ”Those who were sentenced to death testify”.

As a young teenager I was shocked by a picture of a mass grave in the concentration camp Belsen in Germany, and that shock propelled me in to a life long interest in what happened during the Holocaust, and after.

In 1980 I was given that old book, and I immediately started looking for the people in the book, to find out what had happened to them after the war.  It turned out to be a very long search, and yet I did not find all of them – I was looking for 199 persons that were quoted in the book – I found about half of them, all over the world, and some of them were willing to communicate with me.

When I met Janina Ludawska I was already involved in that ”project”, and I had started this.  I knew nothing about her life, how she had come from Poland to Sweden, for example. We were both concentrated on HIV/AIDS when we met.

Some years later I interviewed Janina, and it was one of the most upsetting interviews I have made, because this was when her past came up. It was like walking on broken glass, because everything we talked about was so sensitive.

Janina was Jewish and she was the only survivor of her family. She happened to be in Sweden when World War II started, September 1st, 1939, because she was taking a course here.

Her parents, and other family members were in the Warsaw ghetto, and she managed to stay in touch with them for a while, but then the letters stopped coming. Many Jews in Warsaw, were taken to the extermination camp Treblinka, where they were killed on arrival.

After the war, Janina returned to Poland, to help build up the country. She had a son, Tomek/ Tomas, but when antisemitism flared up again in Poland, 1967- 1968, they left for France, and were later invited to came to Sweden. Tomas eventually went to the US and worked there.  He was a gay man and became infected with the HIV-virus.

Janina and her son were very close, and when he became seriously ill, he wanted to go home to his mother. He left the hospital against the will of the doctors, got on plane to Sweden, and Janina met him at the airport.

I have been told that he was so sick that the ambulance refused to take him, so they took a taxi to the hospital.

Tomas was given a room, he showered and went to bed, and Janina sat beside him, as he was going to eat something. He was home, and Janina said he was smiling, but after a while when he did not respond, she called for a nurse, who could only tell her that her son had passed away.

After his death, what did Janina do? She did the same thing as after the war, she went to Poland, but this time to speak about HIV/AIDS, trying to inform people.

And she volunteered at Noaks Ark.  There was at the time a Guesthouse, where people with HIV/AIDS could come and stay. Maybe they just needed to come away from a city where no one knew they were ill, maybe they were lonely, exhausted, sick, but not sick enough to go to the hospital.  Janina was there, helping, together with the staff.

This one person was stricken by both the Holocaust and HIV/AIDS, and had the strength to continue living. 

There is more to this story.

My work on HIV/AIDS took a long time, and one day Janina asked me to give the interview back to her, and I was very sad and almost shocked about it, but it was her life, her story – of course, what could I say? I sent everything back to her, the tapes and even the transcript – I had nothing left.

During the coming years we ran in to each other, and eventually I found out that Janina had been interviewed by someone else who wanted to write about her, and since they were more friends, I think she wanted to be faithful to him. I could understand that. (Several people have interviewed her since. )

In 2004 my book about the Survivors was published, “Those who were sentenced to death testify – 60 years later”, and in 2008 a new revised version was published.  During this time I met a Polish scholar specializing in the Holocaust, and we talked about having my book translated to Polish. We applied for money to do it, and she contacted a book company in Poland, Czarne.

Suddenly I got a phone call from the scholar, she had a surprise for me – Janina Ludawska had agreed to translate my book about the survivors to Polish. She wanted to translate it in memory of her family. And so she did, at the age of 87.

The book was published in Poland in 2009,  and we went there to talk about it at a Book Fair in Warsaw, and in different cities. We spoke with journalists and took part in several radio programs. The book was also presented on television.

This photo of Professor Tych, from The Jewish Historical Institute in Warsaw, who wrote the foreword to the book, me and Janina is taken in Warsaw when we spoke at a Jewish center.

 

I visited Janina now and then through the years, and I went to her son´s grave for her, because she wanted to know if the roses were still there.

 

This photo was taken the last time I visited Janina in her home.

 

Eventually she moved to a care home, and it was there I met her the last times, in November and December 2019.

I knew she had lived in Russia, so I brought her a book with poems by Boris Pasternak, both in Swedish and Russian, and she smiled and read Russian poems to me.

I also brought her the book I had written on HIV/AIDS, published 2018, and she looked in to it, really interested, because she knew most of the people I had written about.

And then, finally, we talked about the interview. I asked if I could write now, and she said yes.

The last time we met, she had a hard time breathing, she was extremely thin and almost disappearing in to the bed.  She was still smiling, but struggling a bit with the breathing, so I did not stay long.

I opened the window a bit, touched her cheek and left, saying Good night, sleep well. I told the staff about her breathing and called her closest friend, and legal guardian about it.

I know now that Janina was taken to hospital, and that she died the next day, almost 98 years old.

Unfortunately, I never got the interview back, nor the transcript. So this is from my memory – fragments of the chapter that was never written.

A PS.

I just googled Janina, and found something I had never heard before – about her name. From the beginning her name was Janka Chalperson. The last name I knew her by, Ludawska, was an anagram, linking the first two syllables of her parents name Luba and Dawid.

DS

 

 

 

 

 

 

 

 

What Can I Say? I´m BOB.

Some of you may remember that I have written some pieces about Richard Locke, the famous porn star and AIDS activist, who died many years ago.

His brother, Robert “Bob” Locke let me post a link to what he had written about his brother´s final days.

In 2014, Bob took me to his brother´s grave, where their parents are also buried at Benicia City Cemetery, Solano County.

We had a rather fantastic meeting, also a bit challenging, as he told me some rather racy stories about Richard, almost like a test, but he was very funny, and I think I passed the test. We both enjoyed the meeting, and have stayed in touch since.  I saw Richard in the film 5B, and sent Bob a photo of it, on March 15th.

Bob talked about Richard and his last lover. I seem to remember that hey lived in a caravan. Bob told me that they used a lot of drugs, had sex, and fought, and it sounded really dramatic and desperate.

For some reason I started thinking about that on April 18th, I have no idea why, but it came back to me several times, which brought me to think about Robert, that I wondered how he was, being HIV positive in this Pandemic. So I wrote.

And the day after he sent me a letter that immediately had me sitting down. I needed to lean on something.

“A normal question for these covid-19 times, Pia-Kristina, but for me the timing is strange. I was diagnosed with Diffuse Large B-Cell Lymphoma on April Fools Day. I had been sick since November so in fact was akin to glad to find out I had a kind of terminal illness which qualifies me to register in CA for physician-assisted suicide.

That must be strange for you to read. Sorry, if so.

And since that day I have been going through the processes which are nicely in place in Kaiser. I’ve found it extremely interesting and have found the body’s dying processes interesting. I’m weaker daily, picked up a cane early on, and this morning am leaning on it so heavily that I suspect this will be my last day of mobility.
I asked B. (my housemate and best friend from 8th grade) about perhaps installing a hospital bed in the living room. Kaiser Hospice will take care of that and I guess will be visiting me daily from now on.

The ending date (when I take the powder and water) is unsure. I have quietly objected to the 15 day delay that CA requires of the Attending Physician after the first interview. That delay I am sure is for the patient to have time to reconsider, and that’s good and wise, I’m sure. But since it took the End of Life Coordinator until April 10 to sign on an Attending Physician, I’ve already had ten days for reconsideration. I don’t need another 15 days of this kind of deterioration.
And to cap that off, the 25th is a Saturday, probably meaning that it won’t be until the 27th that the Attending Physician will make the prescription to the Pharmacist who is also required to meet with me.

Meanwhile I am a shell of discomfort though not really pain. And I watch the news all day long about all the human lives that are being lost in great pain around the entire planet. It’s a very strange time to be dying myself and making the decision to do it sooner rather than later.

I was just stunned. I have lost so many people, several to suicide, but never this way. I wrote: “Oh what a letter! I can feel my heart beating.”

I wondered if someone would be there for him and hold him, and I begged him to ask someone to tell me when he had passed away.

And Robert asked a dear friend of his, Mary, to contact me. And I am so grateful, because we have been in contact since. She could not go and visit him, because of the Corona virus, and was dependent on information from the friends that were there with Bob. She also asked for me, if I could write about this, and Bob said yes.

I lit a candle for Bob in church, and wished him peace of mind. I wrote that I thought Richard had sent me, because had I waited a week, I would not have known what had happened. Maybe never.

Some days passed, and one could sense a worry as Bob´s health deteriorated. He was in a lot of pain, and it was several days before he could talk to he Physician. Couldn´t they hurry it up!, I wondered, but Mary told me that they had to follow protocol.

The Physician was going to have an online meeting with Bob, write the prescription and then the Pharmacist would bring the drug to Bob. And he had to take it, himself. And that was the worry, maybe he would be so sick that he couldn´t take it.

Then the hospital bed was installed in Bob´s living room and Bob was given a lot of help with his pain – he even played online-bridge with some friends for some hours. And I wondered… maybe with pain relief  he could go on living for a while, but Mary who knew the extent of his cancer, said no.

This afternoon April 24th, Swedish time I wrote to Mary wondering how “our patient” was, and as we wrote to each other, she was told that Bob had passed away, the night before. It had happened very fast. He did not have to commit suicide.

I was so stunned in the beginning, it was absolutely unreal to wait for this suicide, but Mary,  and the thought of writing about the two brothers has helped me.

Here, Bob is standing by his parents grave. To the left is Richard´s grave, and to the right, Bob´s grave to be.

Thank you Bob for letting me post this.  Little did we know…

 

 

5B The AIDS Ward + Extra information

Hello again!

Just a short note, while things are really changing! No San Francisco for me this year. Maybe next? Who knows!

Yesterday I received a gift from the US, the film 5 B, about the AIDS-Ward at San Francisco General Hospital.

 

 

 

 

 

 

 

 

 

I visited the Hospital in 1987, and spent some time there, making interviews with Head nurse Alison Moëd and SHANTI counselors Ed Wolf and Ron Henderson, apart from Laurie D. that I have already written about.

It is a wonderful film, moving, upsetting, surprising!

The former staff, now I think in their 70s, tells about their work with the patients that kept on coming!
Please try to see it!

SOMETHING EXTRA!

In one of my posts I wrote about trying to get an interview with Head nurse Alison Moëd, and that she asked me to contact the Press office and set up a time. While there I was asked if I was going to attend the Press conference, and I was a bit confused, but I said yes. And that was the press conference with the Presidents AIDS commission.

When I was at the AIDS Ward, someone told me that the AIDS commission had been there, but that they had not wanted to shake hands with the patient that had talked with them. I wanted to write about it, but hesitated because it was hearsay. So I didn´t

But now, in the film 5B, it is confirmed, and also that they were all dressed up in white protective clothes, even their heads were covered, before they went in to the AIDS Ward. It can be seen in the film.

Something else.

I have written about Richard Locke, in a previous post.  He joined Rita Rockett in making parties at the AIDS Ward, and he offered massage to the AIDS patients.

I was happy to see Richard in this film. He is not mentioned by name, but he can be seen several times. Here he is, giving massage to a young patient.

I am self isolating, and will try to write as mush as possible during this time. I am not sick, just isolating from my usual routines with travels to archives and services.  Better be safe than sorry.

All the  best to everybody!

Take care!

 

 

 

 

 

 

 

 

i

Jeff Shannon, and friends Dan Turner and Leonard Matlowich

A friend of mine dropped me off at the SHANTI Residence where Jeff Shannon lived, the man I had met at San Francisco General Hospital.

I invited Jeff to breakfast, at a Bagel café.

When we got there, Jeff became very agitated. He came from New York City where they had REAL bagels, and he let the man behind the counter know that. So it took some time for him to complain, return the bagel he got, and then finally decide that he wanted a Croissant. After all that, we could start talking.

Jeff was very well dressed, and his hair was nicely cut. He had glasses and a mustache. Just looking at him, you could not tell that he was sick.

There was only thing that disturbed the picture, so to speak, and that was a terrifying scar on top of his head, after a braintumour operation. You could only see it if he leaned forward for some reason, and the effect was almost shocking.

Jeff was born in Cincinatti, Ohio, and he came to New York in 1974, when he was 19 years old.

He had known he was gay since childhood. He had liked to look at pictures of men with bare chests, that he saw in the corner drugstore.

He made his sexual debut in Ohio, in a Bath house, and that was when he realised that he was not the only one with these feelings.

  • You know, that I wasn´t a freak, or bad or wrong. You know, that there were other people like me. It was very gratifying.

Jeff´s mother passed away when he was young, and his father traveled a lot, so Jeff´s sister was his only safety as they moved around and changed schools.

  • So dominant mother – absent father – theory for my homosexuality, doesn´t really count. Although my father was absent a lot. So my mother was gone by the time I discovered what was going on, and yeah, I told my dad right away.

The relationship with his sister was not good, at the moment, he had asked her to not contact him for a while. He needed to ”clean up the relationships in my life that were causing me distress and pain.” He needed to take care of him self.

Jeff thought that she had never accepted that he was gay, but couldn´t say it, so it was always something else that she was angry about. Until he got AIDS, and she HAD to accept that he was gay, and that there was a possibility that he might die.

She did not have children, and he thought that ”in the back of her mind she always believed that maybe one day I would somehow… get God and get a wife, you know, and somehow give her little nieces and nephews”, but by now she probably understood that that was not going to happen.

It was his sister who persuaded him to tell his father that he had AIDS, she thought it was his responsibility.

They had never had a good relationship, Jeff and his father, but decided to stay in touch through letters and on the phone, but it died out.  But Jeff had a good relationship with an aunt and uncle, that had come to San Francisco, specifically to see him. He said they were very warm and loving, and almost like surrogate parents to him. They had even helped him financially.

But back to his youth.

It was filled with alcohol and drugs and it escalated when he came to New York and started working in restaurants. He was finally in such a bad shape that he would start his mornings by drinking vodka straight from the bottle.

That is when he joined Alcoholic Anonymous.

He got himself out of the restaurant world, because that is where he drank to handle the stress, and started working in offices, and eventually advanced so that he could start working at Wall Street. But he wasn´t happy. He understood that he was just trying to impress his father, who was working in the construction business. He thought his father was impressed by men in suits, who had gone to college and worked at Wall Street.

What he wanted to do was to work in the film industry, as a Film Stills Photographer.

But just as he was starting to take classes, and doing his thing, his breathing changed, and he became very tired, and was eventually diagnosed with pneumonia.

In the article he says that he was working as a photographer, but I don´t think he ever made it to the Film Industry, it may just have been a wish of his that he put out there, or maybe he had just started when he got sick.

I wondered if he had a partner, but he had never had one. He talked about his childhood, and his many years of substance abuse, and said that he had closed off his heart. That he had been ”completely incapable of reaching out to anybody else.” AIDS had taught him, he said, a whole lot about his heart.

Jeff said he was learning to love him self and others.

  • What I realised about three months ago was that I had closed down my genitals completely, and opened up my heart, and my genitals weren´t getting any fun either, so the last three months I have been working on achieving a balance between my heart and my genitals.

Jeff had never had a long term relationship. He didn´t think he was emotionally equipped for it. But maybe now, after three years of therapy, a lot of self examination, personal growth – and a diagnosis.

  • I´m finally really beginning to emerge as my own full fledged adult human being, without anybody else´s approval. My approval is all that counts
  • So can I ask you, how did you live, apart from your work?
  • I went out. During the drinking and drugging age, I went to the bath´s a lot – at least once a week. I was dancing at the disco every weekend. I was spending my weekends at the beach in the summer, and on the streets of New York in the winter, going to coffee houses, and… I had a fun time. I had a great time! I enjoyed it very much. It wasn´t until 1979, that all the drinking and the drugging began to catch up with me.  So I only had a period of about three years where it was really horrible, you know.

Jeff used anything he could get his hands on, during his active years as a drug abuser.

  • I did cocaine, LSD, I never did IV drugs, you know, but I did any kind of powders, pills and gases that I could find to ingest, mostly on the dance floor or during sex.
  • Poppers?
  • I did Poppers, I did … stuff that I don´t even know what it was. But you know, just chemicals that make you high.
  • Do you think it had anything to do with you being gay? That it helped you being gay?
  • No. As far as low self esteem is concerned … I had plenty of reasons to feel bad about my self, outside of my sexuality.

Jeff talked about not being loved, what he called ”therapy crap”, but about being homosexual – he  had understood it so early, ”it seemed to be such a deep part of me, that I never felt bad about my self being gay.”

Jeff did not have a religious upbringing, but had joined the Episcopal Church when he was in seventh or eight grade, and said that it had provided him with a lot of comfort for many years. He had not left the church, but carried his own spiritual relationship with him.

  • That´s been very helpful during the last year or so.

I wondered about AA and the Twelve-step program. Jeff had gone to Gay AA-meetings in New York.

  • Did you find the program good?
  • Saved my life! Saved my ass! I mean I´m here because of it. So yeah, very good.

Jeff was diagnosed in June of 1986, and he came to San Francisco in September.  He had known for some time that he was carrying the virus.

I wondered what made him take the test the first time.

  • Oh, well, I´m a gay man, you know, I was 30 years old, I was living in New York City, and my friends around me (were) dropping like flies. I hate that image though, ít´s not a very good one, but they were dying all around me.

The doctor had told him to not take the test, because he was not sure about confidentiality, but in February 1986 he thought it was ok.

I wondered what it was like before and Jeff told me about 1981, when everybody started to talk about the Gay plague or about GRID.

  • We didn´t know that it was caused by a virus, we didn´t know how it was transmitted, although they believed it might have been sexually transmitted, but I certainly wasn´t going to stop going to the baths, you know… I didn´t want to give THAT up … And over time it just became larger and larger and more frightening and overwhelming… I can remember back in the days when – this was in 1982 – 83, when there was a 1000 dead, and people thought THAT was tragic, and now we are dealing with 25 000 human beings killed by this epidemic. So obviously it´s been a real frightening process… There is a virus out there that kills people in their prime, and many of them are friends, and many of them have been sexual partners of mine, so… I will say that the diagnosis did not come as much of a surprise to me. I still get a little depressed about it, but I´m sitting smack dab in the risk group, you know, so it wasn´t much of a shock, that´s the truth.

Jeff started having fewer sex partners, from a couple a week, until spring of 1986 when he had one partner, and then he got his HIV diagnosis and stopped completely. It wasn´t until now, that he had learnt how to have Safe sex.

Jeff said he had given up. He laughed and said he was ”a gonner”.

  • You know, I thought I was a ”dead duck”, and I´m not! I´m still very much alive. And I´m still a responsible red blooded American male, you know, who wants to go out and express affection and joy… and feel those things with other people.

We talked about Safe Sex, and Jeff said he had been to one of the clubs in New York where men masturbated together, as a way to have Safe sex and not expose each other to the virus. A friend of mine, a doctor, said they were called JO´s place, (JO as in Jerk off).

Jeff who described him self as a prim and proper Republican at the time, was shocked when he saw a well known AIDS activist, David Summers there. He had tried to cover his KS lesions with stripes of leather, and masturbated with the other men, and Jeff had been absolutely shocked and stunned.  He thought it was SO irresponsible, but no one touched the semen. If there was physical contact, it was only skin contact, I was told by my doctor friend.

I had read about these clubs before, when I read about David Summers and his partner Sal Licata, that I have mentioned before. He was one of the men that helped me in the beginning.

Here I put in another cassette in the tape recorder, and when doing so I heard my mother´s voice, as she was making an interview with a famous Swedish actor – I used all her old tapes at the time – and when I told him he freaked out and actually screamed:

  • I can´t believe you are doing this?! I can´t believe you are doing this!
  • It´s not Katherine Hepburn!

He looked absolutely terrified, and I repeated that it was NOT Katherine Hepburn.

  • Let me ask you something else. How much were you in contact with the gay movement, like the political part of the gay movement.
  • I was never a political person at all. I was a Republican, I was a Wall Streeter – that´s how I identified my self for many years. I was in the closet when I was working on Wall Street, at least to my employers… cause I didn´t want to jeopardize my position. I mean, I was… receiving all the benefits of The White Male Dominated Society. I had an expense account and I could fly around the country, and I had a great salary, great looking suits and women working for me and the whole bit. I was a beneficiarer of that whole power structure, and I liked it, you know, and I´m not apologetic for it, and I´m not ashamed of it. To tell you the truth, even when David was doing his political work in New York, I kind of  looked down my nose at it.  I thought it was just a little too distasteful, you know.

It was not until David Summers died, that Jeff understood that there was no one there with David´s voice any longer, he said. So David became a source of inspiration to Jeff, and he had now asked Sal Licata if he would walk with him in the front row in The March on Washington.

David Summers had used to march at Sal´s side, with banners, so Jeff thought it would fitting if he walked there beside Sal, in spite of him being a neophyte in political life.

  • And he said yes, so we have a sort of a date.

I asked about his old friends in New York, and he mentioned many that were sick. He hoped to visit some of them in New York after Washington.

At the moment he was active in trying to raise money for People with AIDS, that wanted to go to Washington, through A Time to Shine. But also trying to get money for his own journey to DC.

When Jeff came to San Francisco, he first stayed in a hotel, then tried to share an apartment with a woman and her young child, but that did not work out well, and after three months he got in to the SHANTI Residence Program.

He also had a few volunteers from SHANTI, Emotional support volunteers, but the was not impressed with that part of SHANTI. They were not trained, he said, to provide emotional support.

I wondered if Jeff would be prepared to let anyone in to his life, and he laughed and said yes – he was going to get married.

  • To?!
  • Any man that will have me, he said and laughed.

I wondered if he was too strong for SHANTI, not needy enough, and he said that it was exactly that! As long as you were weak, helpless and grateful, and did not ask any questions about the money they received from the city, more than a million dollars, then it was ok.

  • As long as you are dying, it´s ok.

Jeff said he tried to talk to them, but they saw him as a trouble maker, and would not take his calls, so he only communicated with them through his lawyer.

I wondered about the house he was staying in.  There were four rooms – he had the smallest one – and a living room and a kitchen.

As his room was very small, he spent time in the living room, but he was tired in the evenings so he would go to bed at 23-23.30.  He had had his night life in New York.  So he would watch the news, Johnny Carson´s The Tonight Show, and watch a film, maybe, and go to sleep.

Instead he got up early in the mornings, and twice a week he was on an AIDS Hotline, answering questions, it gave him a structure to life. Sometimes he would tell a caller that he had AIDS, and it helped them to hear, he said, that there are people who are actually surviving AIDS.

  • Cause the picture is that everybody is skinny and dried up and wasting away in the hospital and weighs 28 pounds, you know, and it´s just not so.  

I asked what illnesses Jeff had, and what had given him his AIDS diagnosis, and that was the pneumonia. Now he had a parasite in his digestive system called Crypto Sperodium. He was on 4 medications a day, and did not experience any symptoms.  It was AZT and he got it for free from his clinic.

  • I am working out in the gym, I´m doing very well, you know. I have a lot energy, I have a great sense of well being. I really think that my disease is in remission.
  • What is that?
  • Remission means… you are not cured, but it is not getting any worse. You´ve managed to stabilize the balance of the body, and you can survive that way.

We went back to the process and the threat of him being evicted.  Jeff said that SHANTI didn´t like the way he acted with their people.

  • And how do you act with their people?
  • I´m very demanding. I ask a lot of questions. I want to know. I feel that they have a responsibility to the people that they serve, meaning the people with AIDS. They´ve managed to create a large powerful end expensive bureaucracy around MY suffering. They´ve used MY suffering to make big jobs for them selves… and, so I wanna make sure that they are allocating the money based on my interest, and not in their interest. 
  • What would you want them to do?
  • I´d like them to spend less money on computers, less money on new offices, less money on new staffing and buy a new van, so that they can take us to hospital and get medicine.

He thought SHANTI handled maintenance problems good, like if the Ice machine didn´t work or if something was broken, then someone would come.

Jeff did most of his personal things by him self, like laundry. He had had a volunteer helping him with practical things, but it made him feel more helpless, and he thought it was good to continue doing these things by him self.

  • I think that I am defeating this disease through sheer… crankiness, you know what I mean?

Jeff seemed to have a lot of self esteem, and he said he had worked on that very hard with his therapist, every Tuesday at 11. On the dot.

  • Never miss it. That´s the one hour of my life that is completely mine, belongs to no one else. One relationship in my life that is inviolate.

Then I asked a question that genuinely seemed to surprise him. I asked what his future looked like.

  • What is my future!

Jeff had plans. He wanted to work in Washington.

  • Right now, what I´d like to do is work for a year in Washington, on one of the AIDS commissions, either the White House Commission or the Congressional Commission which is being put together. I´ve been sending letters to people in Washington, asking for a job.

Jeff wanted to work for a year or 18 months on developing public policy about AIDS, and beyond that he wanted to send manuscripts to Los Angeles, and be involved in the Film community, but he was not so sure he had the stamina to do it at the moment.

If he was evicted, which he doubted, because he and his lawyer thought they had a solid case, he would do what he had to do, move to a cheap hotel in the Tenderloin, or something like that. He would have to go back to work, if he could find one without stress, and start getting an income again, and ”start becoming a contributing member of society”.

I wondered if there were others that were as strong as he was.

  • I can name half a dozen people right now who are long time survivors, who are as eager and energetic as I am. Probably couldn´t name them, but I have pictures, mental pictures about half a dozen of them. Look at Leonard, Leonard Matlowich, Dan Turner, another friend you know. Dan Turner has been five and a half years diagnosed with this diesease. Doing very well. He looks beautiful. I´m in love with him, I think he´s great.
  • Does he know?
  • I don´t know, I told him I think he´s pretty special. Oh, I don´t know that I´m in love with him, but… I do think he´s pretty special.

Jeff thought that I should really talk to Leonard Matlowich, a decorated war hero who was fired from the U.S. Air Force for being gay. He was also one of the organizers of A Time to Shine, together with Dan Turner

  • He is a very courageous man, and now he has AIDS.

 

Had Jeff made any friends in the house? It didn´t seem so. Two had visitors, two others didn´t. Jeff said they stayed in their rooms, alone. One of them lied still in his bed with his hand folded on this chest.

  • Like he´s already been laid out. (In a coffin.) Oh yeah, he spends his whole day layed back in the bed like this.
  • Can anyone talk to him?
  • You can talk to him, but his mind´s about gone. There is nothing left, it´s like oatmeal.
  • Does he say something?
  • Yeah, but he talks like a child.

It was not clear who took care of this man. Jeff had tried to send him to hospital, because he didn´t understand how sick he was, but he was sent back, and he was angry at Jeff for sending him there.

  • I don´t know how to handle him. I am not equipped around dealing with people who are dying. SHANTI is, I give them that credit. They are very equipped to handle people who are dying, they´ve had a lot of experience with it, (but) they don´t know how to handle people who are living, and surviving, they don´t know how to handle that.

Back to Jeff, and the possibility that he would come down with Kaposis Sarcoma or something else. Did he have a plan for how to handle that? Jeff said he would handle it like he did with AA, One Day at the Time.

After he got his diagnosis, he stayed in his bed for about 6 months, until he started picking up his life again.

It was a television program. He saw a long time survivor on television who said that it was possible to survive AIDS. He was 4 years in to his diagnosis, but through love, medicine and miracles he had succeeded in creating health and success in his life.

  • I wanted to just jump through the television screen and stand next to him and say: I believe that too!

From that moment he returned to life. He got out of bed, called people, and changed his diet to almost completely vegetarian, and started going to the gym.

He also listened to tapes by Louise Hay, where she talks about loving your self, changing your attitudes etcetera. He listened to them before he went to sleep. He also used the Serenity Prayer, as he had done before, when he became sober, and stopped smoking.

Finally, I asked what he wanted to do, more than going to Washington.

  • If I could make up my own reality? I DO have the power to create my own reality

He talked about walking in to a movie set and start taking pictures. That was the quick and easy answer, he said.

He also talked about meting someone, allowing that to happen to him.  He had done some work with him self, and he pointed at his head and his heart.

  • I´m starting to reap the benefits of that, and it´s very exciting.

Then he started talking about being a spokes person again.

  • We need a good effective national spokesman for people with AIDS. We need someone who is bright and articulate, and well spoken and well read.

He couldn´t see that there was such a person, who could also speak without anger, so he wanted to fill that role.

Here he asked me to turn off the tape recorder. It seemed like he wanted to take the place of Leonard and Dan, but he didn´t speak openly about it.

  • I will never be cured of alcoholism, that´s for sure. I may never be cured of AIDS, but by amending my lifestyle, and about the spiritual work that I do, I may be able to place this disease of AIDS in remission as well.
  • It sounds like you have come to very good conclusions in your life through…
  • Exactly! I couldn´t put it more perfectly my self. AIDS has been an opportunity for me to take a real close look at who I am, what I am doing and what´s important for me.

Cause you know, if you´re faced with dying in the next couple of years, a lot of things that were important in the past suddenly become unimportant, just doesn´t matter… Life does become a richer experience when faced with death.

  • Your life would have gone on pretty much the same…
  • I don´t know. I was ready to make changes in my life, I know that, even before I was diagnosed, but it was AIDS that sort of gave me the kick in the pants.

Jeff didn´t see him self as dying.

  • I see my self as living, surviving, and doing it healthy and with passion.
  • That´s nice!
  • Rather than to learn how to die with dignity, I am learning how to live with passion.

We went to Jeff´s home, in the SHANTI Residence.

On the way there he talked about going to the gym and dating. He seemed extremely healthy and he was absolutely convinced that his disease was arrested.

In the entrance sat a man with dark KS lesions all over his face and arms, he was painting a chair blue.

I had to sneak in, because visitors were usually not allowed, out of respect for the other residents privacy and anonymity.

Jeff´s room was immediately to the left. It was very small, and most of it occupied by a big bed with a Scottish plaid bedspread. There was a desk and a chair, dark green walls with photographs of his family. Large books about photo.  A stylish home, really a world of its own.

While Jeff talked, or rather screamed at someone on the phone, who turned out to be Leonard Matlowich, I looked around as I was waiting for him outside his door.  Several of the men were resting, watching television or doing something in the kitchen. Some of them were very thin, and marked by KS lesions. There was actually a big difference between Jeff and them, as he looked so healthy.

Jeff gave me an invitation to a benefit for A time to shine, where I would eventually meet his friends Dan and Leonard.

My notes are there, as you can see.

I met Jeff that evening, but he was ”courting” an important politician, so I just walked around by my self. There was not a lot of people there.… I sat in the kitchen and talked to people. There had been so many benefits, so many deaths, and whole circles of friends had died. There was no meaning in falling in love, because everybody was HIV positive and died.

I met a woman called Eileen Hansen, that I would run in to later. She talked a lot about the NAMES project, and said I HAD to go there, and I will.

I talked to Leonard Matlowich and we checked our calendars, and realised that we could not meet. It was a very friendly meeting.  Just as Jeff, he looked so healthy that I had high hopes that there would be other chances to meet. But that was not to be.

I tried to talk to Dan Turner, but it did not work either, not until the next year. I ran into him on a bus, and we decided to meet.

 

But that evening, at the benefit, that was the last time I saw Jeff Shannon. I wrote to him, but there were no answers.

I eventually contacted the journalist that had written about him, Charles Linebarger, and he informed me of his death, in March 1988. About six months after we had met, in September 1987.

I contacted Dan Bacon, who was Jeff´s lawyer, and he got me in touch with Jeff´s sister.

I had been told by a man at SHANTI that Jeff had died ”a terrible death”, but I don´t know how he could know that, because I don´t know if anyone was there with Jeff. I wrote to the hospital where he died, to find out, but they could not help me with that information.

Dan Bacon sent me the Certificate of Death.

Cause of Death: Cardiopulmonary Arrest, Hypotension, Sepsis, Aquired Immune Deficiency Syndrom

Other Significant Conditions – Contributing to Death but not related to cause given:

Pancytopenia, Disseminated Intravascular Coagulation.

In the Certificate of Death the physician that cared for Jeff wrote, ”I attended Decedent since 3-20-88” , ”I last saw Decedent alive 3-25-88”. Jeff passed away at 17:25.

At that hour, one can hope that someone was there.

Jeff was cremated on March the 30th, 1988.  And his ashes were sent to his sister.

 

Dan Bacon, about Jeff Shannon.

I looked him up when I returned to San Francisco 1988.

Dan Bacon and Jeff had met in the spring of 1987. Dan was active in a group called the Golden Gate Business Association, that would take out men with AIDS to the movies or to dinner.

They had turned their attention to SHANTI Residences in San Francisco, but it did not work out so well with SHANTI.

Dan didn´t want to work politically, but rather by providing social activities. He had previously worked with other residents that were going to be evicted by SHANTI, that had contacted him because he was an attorney, but he was told by SHANTI to not interfere.

He mentioned a case where a man had been given 5 days to move. He had tried to help by talking to SHANTI, but they refused to talk to him, so he decided to get out – it was a difficult situation because of his position within GGBA, but he withdrew, and that same year 1986, the social activities stopped altogether, because someone at SHANTI had complained.

Jeff had found Dan´s name on on the wall in the SHANTI Residence he stayed in, and he called and asked him if they could go to Baseball match together, and Dan said yes.

At that time Dan was under a lot of stress, building his Law office, so Jeff was, as he said, a breath of fresh air and they went to several matches together. And Jeff revealed more and more about his disease. That is how their relationship started.

In the summer of 1987 Dan received a frantic call from Jeff that he had problems with SHANTI. Could Dan help?

Dan didn´t want to worry Jeff by telling him about his previous contacts with SHANTI, but eventually Jeff found out that Dan had suffered because of previous problems with SHANTI, and that made him even more determined to push forward with the process against SHANTI, and that is how Dan become involved in the case.

Jeff could be very intense and argumentative, and that was one of the reasons why SHANTI wanted to evict him. He was also accused of coming on sexually to other tenants. Dan never talked to Jeff about that – he didn´t even know if it was true. Dan himself thought it was unlikely, as the other men living there were all very sick.

He had interrogated one of the responsible people for the SHANTI Residences, but nothing was said then, only that Jeff ”could get in your face” and be argumentative.

One of the things Jeff had asked about was how SHANTI could place people that smoked near a person that had had Pneumocystis for example. You are not allowed to smoke in hospitals, so why there? He questioned their procedures, their policies. And Dan said that that was when they began to make sure he had roommates near to him that were smokers.

He also asked about their finances, where SHANTI got their money from, and how they spent it, and who were the people working there?

  • Jeff was very bright, in my opinion, and when he began to poke around on that – that´s where I think that SHANTI decided they wanted him out.

All this seemed to have happened around the time when there were a lot of questions about SHANTI, and many complaints from volunteers and staff, also about the boss Jim Geary, that had recently resigned.

Dan tried to help Jeff, and asked questions about previous evictions, but he got no answer, he said they stonewalled it.

I wondered about their personal contact, and Dan told me that he invited Jeff to dinner in his home several times, and that Jeff spent a lot of time in his office, but he had stomach problems and could suddenly become so weak that he just had to lie down on the floor.  Dan felt sorry for him.

Dan talked about how the USA that could spend a lot of money on wars, but not on educating people about HIV/AIDS, even though thousands of people died. He put his trust in Surgeon General Coop that had turned out to be a man who cared.

Dan had lost a lot of friends and employees, and two loved ones to AIDS. He also said the government was not spending money on ”why some of us are healthy”.

  • I have been in the San Francisco Gay Men´s Health study for several years, which is funded by National Institute of Health. Apparently my blood is healthy, apparently they´ve tried to infect a sample of my blood with the virus… Why is it that our blood does not react the AIDS virus?

Dan talked about research that should be done, why people who could have been exposed to the virus did not become infected. They were healthy, and they tested negative to the HIV-virus. There was a lot of research to be done, also about this.

When I met Jeff, in the fall of 1987, he had started training and things, and I wondered about that.

– He was dating people, and he wanted to have a lover. He said he was just learning to love, and I don´t know if he ever made it. Do you know?

– We talked about that. He mentioned how he was working at the gym and trying… to get his health back in shape, and then his health began to deteriorate, and kind of upset that issue.

Dan told me that Jeff had a very negative outlook on life, and that he was very conservative, and possibly even racist. He didn´t believe in welfare, his view was that people used the system, especially black women with many kids. But after discussions with Dan, about his own need for help by the society, and as his health deteriorated, he started to change.

He had also been very rude to Dan, and didn´t understand why Dan was still willing to help him, and Dan, who is also a pastor, told him that he looked upon him as a person who could not help him self. As a helpless person.

Jeff tried to work, but could not work a full day, as he would lose energy.

  • Lo and behold, at the end Jeff began to to say… ”I guess there are times where our society should take care of its sick.” and he basically said that because he had to agree, that his taking money was proper.

I wondered if he met someone and if he made friends, and he had. If I understood Dan right, he had not wanted to talk to me, because other People with AIDS that had known Jeff, had contacted him. Even from Washington, and he couldn´t take them on.

He did send a letter back to a man in DC, also telling him that Jeff had passed away. He received a letter from this mans mother, who told him that her son had appreciated to be told, but now he had also passed away.

  • He met a lot of people I think in his last months that did have AIDS, and…    It´s a horrifying Holocaust out there, and I… I think America, I think the whole world needs to experience that Holocaust.

Dan also mentioned the Presidents AIDS Commission, and said that the President had rejected his own commissions suggestions.

Jeff could not pay for his own defence, and Dan and he had agreed on how it would be handled once he won his case. But the case was postponed and postponed, and Dan said, with a smile, that they were waiting for him to die, but in the end they received a settlement.

– What was his condition when it actually happened?

– He was in the hospital.

– So he was not present, in person?

– No, I called him from the Judges chambers, and he was coughing and coughing, couldn´t quit coughing. And he said: ”Why Do I have to settle this? Why?! Let´s take them to court!” I said: ”Jeff, I´d love to take them to court, I´d love to win, but how the heck ”– and here Dan whispered – ”can I do that when you are dying?!”

And you know, I had another associate with me there at this settlement conference, that listened, and we were both in the conversation, and we put the phone away as he was coughing an coughing, and he goes: ”Ok, ok. I guess I have no choice, do I?” And I said: ”No.”

But I said: ”Jeff, you will not be on the street, just try to get out of the hospital.”  ”I will, I will.” That´s the last time I ever spoke to Jeff.

Jeff died three days later, in the hospital.

Mr Bacon sent me a photo of Jeff that he had taken.

After Jeff ´s death, Dan took care of everything. Jeff´s mail was forwarded to him, and he told the creditors that there was no money. He sent the urn to the sister in Ohio.

Jeff and his sister had had a bad last conversation towards the end, and Jeff had screamed at her, and she felt very guilty for not coming to SF.

Dan said he was grateful that he had made Jeff sign some papers about his wishes, cremation etcetera, so things were taken care of in the end. Jeff had tried to stall signing the papers, like the Power of Attorney for example, but Dan said: ”I am not asking you, I am telling you!”

Jeff had a number of books on photo, and a lot of proofs, that he wanted to be destroyed, and that was done.

He also had tapes with Louise Haye, on love and acceptance.

  • So I was glad that he had tried to… you know, look somewhere in that area towards improving him self in those areas, in being at peace with him self. And I know going to the gym and other things was very much a part of that.

Here I asked if Jeff ever found someone to love, and Dan laughed a little, and mentioned a letter. I turned off the tape, so he could talk about it. There was some kind of contact with someone.

Dan talked about their private conversations, and Dan had moaned and complained about some problems he had, when Jeff had said: ”You know… it ain´t so bad from where I see you. You have a nice car, you have a nice apartment, and you have a nice office… and you know, you don´t have this plague afflicting you” and… It was kind of reminding me, you know, I have a lot to be grateful for.

Dan said that he could have been affected by HIV/AIDS.

  • I try to look at other people as though that could very easily be me, sick and all, and I think, as Christians, as I am, I think you are commanded to be charitable to those who are sick.

Jeff had from the beginning been like: ”I´m not my brother´s keeper, why should I? ”But he changed later.

I wondered who had gone to Jeff´s memorial, and here Dan sighed deeply. He had not been there. He didn´t remember why. A man from the office went.

Dan had been to so many memorials, and he mentioned friends that had recently passed away.

  • Did Jeff have any kind of religious or spiritual experience at all, or was he only interested in winning this case? I had a feeling that this kept him up, and when he settled he just…

Dan had mixed answers to this, he said. He had told Jeff to not worry about SHANTI, to let Dan handle his housing and dealings with SHANTI, and to concentrate on Washington, on being a spokesperson for People with AIDS.

  • I told Jeff to do that, but unfortunately it seems as though this lawsuit… really kind of bogged him down.

I wondered about Jeff´s last time in life.

  • What was he like? Did he panic? Did he understand that he was dying?

Dan sighed.

– He understood that he was dying, but he… lived day to day, believe it or not, as though he was gonna live forever, it seemed, because he kept concentrating on getting this case ready for trial.

Jeff became more and more occupied with his case. He would come to the office and be very demanding, in his New York style, as if it was the one and only case the law firm had to deal with, and it escalated the more sick he got, and exhausted both Dan Bacon and other members of the staff.

  • I kept saying: ”Jeff… you may not live this trial”, and he said: ”Well, make sure you do this! Ask for this record and Ask this question”, and X Y C, and I´d say: ”Jeff, just do me one favor: Concentrate on living! Concentrate on your health! I don´t know what you can do, but damn it, do it!!!”

Dan talked about moments when he hugged Jeff and he was crying, and how Dan had to go away, because he knew he would lose Jeff, that he had gotten to know very well during a short time.

  • But… as far as the issue of recognizing he was dying… He never really wanted to talk about dying, and when I would bring it up, he would say… ”Oh no! I´m not DYING with AIDS ”- here Dan laughed a little – ”I´m LIVING with AIDS! You ought to read the literature on it!”, he´d say!

My contact with Dan Bacon continued, I tried to find out if anyone was with Jeff when he passed away, but in December 1990 he wrote back that he did not know. He was at an airport, when Jeff died, and was paged at the airport.

He had suffered on his own. His long time friend had passed away in September that same year.

 

In the fall of 1988 I met Dan Turner.

We drank tea, and while curled up in scarfs because of a cold, he read to me from his notes, when he was not coughing. Sometimes he would talk really fast, so he could finish saying something, before he started to cough again.

Dan had found out about Jeff´s death on April 24th.

  • So, when I look at May 15th, which is a Sunday, and at 1 PM was Jeff Shannon´s Memorial. It says: I go to 125 Alpine Terrace to the home of Terry Freese… introduce my self to… Let´s see here. He serves Strawberry cake, I have a lemonade. I met a woman who calls her self Gloria Swanson, a woman Jeff partied with on Fire Island, who said he was ”well endowed”.

Fire Island is Gay Resort, and this woman had a house there and Jeff had stayed with her, and there was a lot of partying and a lot of sex.

Dan continued to cough and cough.

  • I don´t see anything more here. Oh wait! Here´s some more. It says: I look at the view from Terry´s apartment with binoculars. It´s a beautiful day with a clear blue sky. (Couldn´t hear the rest because of the coughing.) It says: Jeff had a flare-up of CMV. He lost his mind the last week, and was seeing cartoon characters, like a rabbit and Mickey Mouse.

Dan explained to me about CMV, that it is a virus that compromises the immune system and can be dangerous for people with AIDS, make people blind and affect the brain, and more.

I asked about Jeff´s plans for his political work, and he had worked hard on it, Dan said, and had set up a press conference before the March on Washington. He was on television speaking from the steps of the Capital building, about the needs of People with AIDS, and he had set up appointments with congress people, and more. Dan Turner had also talked at that time, but by then the cameras were switched off.

Dan told me about a discussion he and Jeff had had over lunch. Dan could not understand how Jeff could continue being a republican, knowing that the Republicans did nothing for people with AIDS.

  • But Jeff´s allegiance was to the Republican party, so we got in to a fight about that… and then I realised how republican Jeff was. Up til that time I had not realised.

Dan thought Jeff was angry, because he was caught between hos old belief´s and the reality of the new situation.

  • Which was that they had done virtually nothing, and had been, I think… you know… they had been irresponsible to the point of criminality.

Here, Dan talked about the Republican Party and what they had not done, and about his friends that had died, at least a hundred had passed away. The more he talked, the more he coughed, because he became more and more upset, not the least about president Reagan and his response to the AIDS commissions report.

  • They told him what to do, he refused.

Dan talked about a little girl that had fallen in to a well, Jessica, and how it became a big splash of publicity all over the US: Save little Jessica! Save little Jessica! At that time thousands of gay men had died, and no one said anything about it.

  • I was sorry the little girl fell in to the well, and I mean I was glad that she was rescued, but the entire country was glued to the television set: Will they save her? Will they save her? And then when she was saved – and here he slammed his cup on the table – Reagan, the president gives medals to the people that saved her, you know, and goes on television and says: Oh! Isn´t this wonderful? This shows what the Americans can do. That they have such good hearts!

Here Dan just walked away, for some reason, and took the microphone with him, but the came back.

  • I was furious! I was just furious that all this attention was payed, and no attention had been payed to gay men that have died of AIDS! Normally, when there is a disaster in the country, the… president will go to the place where the disaster is… if there´s flood, if there´s a tornado or an earthquake, the president will go to the scene of the disaster, you know, and money will be allocated, and the president will say: Isn´t it too bad, and We have to help these people. In, you know, six years, seven years time, the president has never, NEVER done that with gay men who have AIDS, and who have been dying, every year. Not gone to the hospital, not, you know… nothing! He´s a criminal! He is a criminal, as far as I´m concerned.

Here Dan talked about the government, not specifically on AIDS, many other things, but in the end he sighed and said it was depressing.

  • I hope all got in there.
  • Yes.

Dan laughed, and his cat purred in the microphone.

Dan talked about about Washington, that he had been one of the readers of names, when the AIDS Memorial Quilt was layed out for the first time.  He also talked about the Supreme Court and demonstrations.

Dan didn´t think that Jeff had taken part in any of the demonstrations, because he wanted to get on the Presidents commission. He didn´t think Jeff wanted to demonstrate and get arrested, because that would probably have prevented him from being on the AIDS commission. Dan didn´t think he became a part of that, but that he had applied.

I have tried to find out about it, but have failed to get an answer.

He said that Jeff had worked hard around fundraising.

  • He worked a lot harder than me. I worked with him, and… he was tireless… It seemed at that time that it was good for him, for his health.

Dan meant that it was the people that kept busy and were doing things that lived the longest.  He himself was one of the longest survivors in San Francisco.

We talked until late, about Dan´s health, about the NAMES project, and about Leonard Matlowich. He told me that it was Leonard Matlowich that had put the politician Harvey Milk´s ashes in the ground at the Congressional Cemetery in Washington, DC, 1987.

Harvey Milk was murdered on November 27th, 1978 in San Francisco.

  • Why did it take so long?
  • They kept them here. His lover kept them here, all those years, and then they decided to bury them, the weekend of the March. They put his ashes not far from where Leonard is buried.

Leonard Matlowich, passed away in June of 1988.

His headstone does not carry his name, but it says:

A Gay Vietnam Veteran

When I was in the military they gave me a medal for killing two men

And a discharge for loving one.

There is a lot to be seen about Leonard Matlowich on the Internet, but his speech in connection with Harvey Milk´s ashes can be seen on Youtube.

Look for: 1987 Harvey Milk Memorial Dedication – Leonard Matlovich.

 

This was the last time I saw Dan Turner.

He passed away at Coming Home Hospice in May 1990.

 

I had written to Jeff´s sister, Lynne, and she wrote to me in the spring of 1990, after having given birth to a little girl.

She wrote that she had loved her brother, but wasn´t sure he had known how much she cared for him. She had gone to San Francisco to see him a month before he died, and was shocked at his deteriorated condition. She had not realised how sick he was.

Jeff´s father did not come to see him. But he had also not seen her in ten years.

She wrote that what Jeff always wanted and didn´t seem to find, was love.

”I think that now that he is with our mother in heaven, he has found it… that is something that I truly believe…”

There had been a Memorial for him, and she wrote that it was very nice.

”He wanted to be buried near our mother – he is with her now and is in the family burial plot with our mother and grandfather … our grandmother will also be buried there…”

Talking to Laurie D.

 

Because of Sam…

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

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

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

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

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

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

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

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

She said that people loved him.

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

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

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

So who was Sam?

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

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

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

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

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

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

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

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

  • How much of your work is spiritual?

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

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

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

Laurie said that the cooperation with SHANTI worked well.

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

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

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

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

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

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

I wondered what church Laurie went to.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

The Trust Me Baby-days are over!

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

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

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

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

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

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

It is nice when what I write land somewhere, not only disappears in to cyber space. SHE ACTUALLY GOT BACK TO ME, just as I had published this, so the information landed! It did not disappear. I am happy about that.

But here goes:

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

 

 

 

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

When I arrived in San Francisco…

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

However, when I came to SHANTI, she was no longer there – she had suddenly quit, and she had not passed my name on to anyone, so I had to start all over again.

On the phone, M. had told me to not get stuck in my original idea, but I did not want to listen to that, at the time, but it turned out to be a very good advice, especially in combination with that she was not there,  which forced me out in the wild, so to speak.

It was such a difference to Sweden, where everything was so very secretive. In San Francisco so many people were involved, and I eventually learned that many of the volunteers, and sometimes staff were HIV – positive themselves, and that there were situations when a nurse would come to an AIDS Ward and realise that he or she knew every patient on that Ward, and didn´t know where to start.

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

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

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

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

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

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

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

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

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

But back to SHANTI. I kept on asking for help, for days, and I was eventually given some names of People with AIDS, and one volunteer. If I remember it correctly it was Paul Stern who helped me. And later Chris Sandoval. I met him in connection with an AIDS conference in Sweden, some years later, and he kindly updated me on how people were.

The first names were Keith and Gery. They had been together for a very long time, and had decided that if one of them died, the other one would follow.

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

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

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

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

Daniel Witt, an actor and teacher from the UK.

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

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

 

At the AIDS Ward 5 A at San Francisco General Hospital, I met two SHANTI counselors, who were there to help the patients and their families to cope, showing family members that it was ok to touch a person with AIDS.

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

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

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

 

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

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

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

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

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

While visiting the Names project I suddenly saw the AIDS activist and porn star Richard Locke come trough the door,  and I immediately asked if I could interview him, and he said yes. I have already written about him in this blog. Richard Locke – The Swirling Dervish, A Whirling Dervish, but not about the interview.

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

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

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

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

But, back to the press conference.

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

We met for lunch the next day, and he gave me a whole list of names. It was friends, activists, people in the Sex industry, and more.  I called several of them, but only got one answer, and that was from a SHANTI volunteer, Brad Cochran.

Keith who turned out to be HIV positive, brought me to his home, so I could meet his partner, Jay Rindal, who was very sick.

 

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

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

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

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

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

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

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

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

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

 

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

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

The Pope was coming to San Francisco, and John had been chosen to meet the Pope, as a Person with AIDS, together with a group of people from the church.

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

 

I was adviced to contact several other people.

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

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

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

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

More names will follow, but this is the beginning.

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

Remembering Meredith…

I was on the AIDS Ward 5 A at San Francisco General Hospital, in the middle of an interview with Ed Wolf, one of the SHANTI counselors, when the door to the office suddenly opened and a woman called out : What? What?! Cancer? That too???!!! And then she left.  This was in the fall of 1987.

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

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

Here she is talking about her situation:

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

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

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

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

https://instagram.com/p/B4f_HUOFWrm/“If I tell you I was diagnosed with a terminal illness, the normal reaction is 'Oh, do you need anything? How are you feeling?' If I say I have AIDS, the first question is 'How did you get it? What have you been doing?'Nobody cares that I am sick, that I hurt, that I'm tired all the time, that each movement is painful. They hear AIDS, and they have a preconceived idea of my life-style and my morality.Hey, nobody told me about AIDS! What is my crime? That I loved somebody too much?" — by Meredith Miller, a mother of two, who died of AIDS in August 27, 1988. Meredith was 33 years old.🎥 CBS News Special: AIDS Hits Home (1986)📖 Fee, Elizabeth, and Daniel M. Fox, editorsAIDS: The Making of a Chronic Disease. Berkeley: University of California Press, c1992.#whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids

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

 

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

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

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

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

Here is what I wrote about Meredith, printed in a SHANTI Volunteer Memo, in December 1988.  (I mention photos in the text, one of them is the photo at the top of this text.)

For Meredith Miller

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She signed the letter with the name: Spoken sky

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

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

A PS.

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

As Meredith would say: My Heart!

DS

 

Living with Bay Area Reporter

Living with Bay Area Reporter, BAR.

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

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

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

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

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

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

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

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

Chef Timothy Levens 

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

William C. Morgan

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

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

Gary Lee Brown 

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

Fred MacKissic 

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

Dennis McCool 

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

James W. McClure

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

Joseph Holloway

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

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

Randall James Whittaker

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

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

The first AIDS Ward and more…

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

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

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

A relative of mine just sent me this article about it:

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

I hope you can open it.

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

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

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

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

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

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

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

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

Death is nothing at all

I have only slipped away into the next room

I am I and you are you

Whatever we were to each other

That we are still

Call me by my own familiar name

Speak to me in the easy way you always used

Put no difference into your tone

Wear no forced air of solemnity or sorrow

Laugh as we always laughed

At the little jokes we always enjoyed together

Play, smile, think of me, pray for me

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

Let it be spoken without effort

Without the ghost of a shadow in it

Life means all that it ever was

There is absolute unbroken continuity

What is death but a negligible accident?

Why should I be out of mind

Because I am out of sight?

I am waiting for you for an interval

Somewhere very near

Just around the corner

All is well.

Henry Scott Holland (1847-1918),