I have lived on signs… and impulses…

Many years ago, in 1998/1999 I wrote a book about a group of artists, living in a block of old buildings in Stockholm, Sweden.

They were mostly painters and musicians, born between 1907 – 1930, and they lived there because they wanted to be with like minded people that they could share company with, and they all wanted to continue working.

They practiced on their pianos, they went to their ateliers if they had one, or stayed at home and painted and painted. They had one thing in common as they grew older, and that was that they had very little understanding for their bodies, when it let them down.

I am there now, as I have turned 70. I have a very strong desire to write, but everything goes slower and slower. The Pandemic, and not being able to travel and meet like minded people has not helped at all.

One can say that I have lived on and been inspired by signs and impulses, sometimes from posts in the AIDS Memorial, and from sudden messages.

Some of you, who have read things I have written here before, may remember a piece called ”There was a man called John…” and a piece I called ”Ashes”.

I wrote about John LoCoco, and about a tile I have placed at the Commemorative Wall & Fountain in Most Holy Redeemer Church in San Francisco, in memory of John and everyone I met in San Francisco that have died of AIDS.

 

One of the people I wrote about in ”Ashes” was Charles, a public spokesperson that I met at The AIDS Project of the East Bay in Oakland in 1987.

After his death, in 1989, I got in touch with his mother, and when I asked where he is buried, she told me he wasn´t buried, that she saved his ashes, so they could be buried together.

I recently found out that she has passed away, so I tried to contact the family through the Funeral Home to send my condolences, and ask if they are now buried together, Charles and his mother, after all these years. But I received no answer, and thought that I may never know what happened.

 

But, suddenly, I received two messages at the same time.

A relative of John LoCoco´s had been thinking about him for several days, and in the end she just wrote his name on the Internet, and found my text about him. Not the interview and all, (that is yet to come), only about how we had met in San Francisco and about Most Holy Redeemer.

She was very pleased to find him here, and wrote that John was much loved by the family and that they all miss him. The family was very pleased to hear about our contact, and we will be in touch again.

 

The other mail came from a brother of Charles.

As he was going through his mother´s papers, he found one of my letters. We had lost contact, but I kept on writing, and was in the process of sending her a new letter, when I found out that she had passed away.  It seems like the family had not seen the condolences I had sent through the Funeral Home.

He told me that she passed away in 2020, at 93 years of age, from Covid-19.

I sent him the piece I had written about ”Ashes”, where this photo of Charles is shown. He wrote back and told me that it was taken in 1987 when Charles was visiting, and that their mother always kept that photo displayed in her dining room until she passed away.

And, he could tell me that Charles is now buried beside his mother and father.

It feels peaceful, and I am most grateful for the messages.

 

I have written a lot on impulses, but I will write more in a chronological order from now on, as I have a lot of notes and much to tell.

This is a new beginning, and I hope some people will follow my work.

I have previously written about my work in Sweden, about some tough meetings in New York City, and some about what happened when I arrived in San Francisco. I will start somewhere there.

Let me add something!

When the brother of Charles, contacted me, I was very excited and I contacted a friend in San Francisco. We had been communicating about Charles and the ashes, and the fact that I may never know.

But now I knew, so I was very pleased and wrote to her. But she wrote back that she couldn´t answer, because she was sitting with a friend of hers that had died.

  • I´m sitting here with Irene…

A few days later I found out that it was Irene Smith, that I had once interviewed in San Francisco.

I had seen an article about her in a magazine, in 1986 or 1987.

I have found a (blurry) photo from that time.

She had been a drug addict who had turned her life around, and was one of the few people that touched people with AIDS.  She volunteered at San Francisco General Hospital.

I really wanted to meet her, and Dr Elisabeth Kübler Ross (that I was in contact with after the death of my mother), who was a close friend of Irene arranged for me to see her in San Francisco. We met in her  apartment.

She was dressed in white, and everything around her was white, She offered me water to drink.

The only words I can think about are serene… serenity.

She told me about how she touched the sick and the dying, and how she related to them.

I have moved a lot, and at the moment I can not find her interview, but when I do, I will write more.

I understand that she passed away in the apartment where I met her, surrounded by people that helped her on her way, as she had helped so many others.

Here is her story:

http://www.everflowing.org/irenesmithbio.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The little girl on the cover of Newsweek

I remember this cover from September 1987 so well, and I have always wondered what happened to the little girl.

Now, through The AIDS Memorial page, I have  found out.

The girls name was Boobie, and she passed away a few months after the cover was published.

She became a representative for all the children that were affected, either by being infected them selves and/or becoming orphans. 

Boobie´s mother gave birth to six children, while using drugs.  They lived with their grandmother. Bobbie had a younger brother, Lil Eddie, who also passed away.

The woman who tells the story is one of their cousins, who also lived with the family. She said that Boobie and Lil Eddie were treated like Angels because they were so sick.

They both died at home, and the extended family stayed with other family members or friends during that ordeal.

The children are buried together, but not with their parents.

 

There was a man called John…

I met a man called John LoCoco during a course called Care for Caregivers, in 1987. He was a volunteer at a hospital, but he was also a man with HIV.

As we were doing a little exercise looking at our shoes, and saying something about them, he made a comment that made us understand that he probably would not walk in them so much longer, nor live.

I asked if I could interview him, and he said yes.

John LoCoco  was a devout Catholic, active in Most Holy Redeemer Catholic Church in the Castro. He was one of the people with AIDS that was chosen to meet Pope John Paul II, in 1987. I will write more about him later.

Here is the Commemorative Wall & Fountain at the MHR Church, that was opened April 29, 2013.

I belong to the Anglican Episcopal Church in Stockholm, and last Sunday the priest said the words There was a man called John… It made me want to write this piece, as I am just about to start writing more actively about the people I met in San Francisco. 

In 2014 I had a plate made for John LoCoco, and everyone I had met that had died of AIDS in San Francisco.

 

 

 

 

Who have we lost? Who have we lost?

I am reading a detective story set in the 1940s, during World War II. It is a case about a young man that has gone missing, and the female detective is talking to the man´s mother.

The detective remembers what she had seen on a street: a messenger going from house to house to deliver telegrams, and mothers running out of their houses calling out in desperation: ”Who have we lost? Who have we lost?!

The young men had grown up on that street, everyone knew each other. And now they were soldiers. Who had they lost?!

That scene touched me so, and it reminds me of all the people we have lost, to HIV/AIDS.

Let me tell you about a few of the men in Sweden that we lost.

Here is Lars Rading, an artist. He devoted his life to painting. He passed away in Spain, with his partner by his side.

Here is his partner, Börje. He found it very hard to live without Lars, to motivate himself to go on.  He hoped he would get a stroke or something similar, and that is what happened to him.  He died with his mother and sister beside him.

 

Here is Ron, from South Africa, who lived with a Swedish man, Alf here in Sweden. He died in the hospital, with his partner and close friends beside him. His parents called him, and Alf placed the phone next to his ear.

And here is Alf, his partner, who had survived a serious suicide attempt – he was found after 7 days – and lived to take care of Ron, and become seriously ill after his death. I think there were times when he wished he had not been saved.

But, Alf had another close friend, Egil, who had promised to be with him to the end, and he came from Norway and stayed with him, as he had said, to the end.

 

And here is Torgny, who had such a hard struggle with anxiety and fear of dying. He kept it mostly to him self, but in the end the family in the countryside knew.

I will never forget his room at the hospital.

I came rather late in the evening and the family let me in. It was a big room and there were many relatives, some watched ice hockey, others tended to Torgny, and some ate of the food and bread that friends had brought to them, as they were holding watch with Torgny.  It must have been almost like being at home for him.  He passed away the following morning.

 

And here is Mats.

The last time I saw him, he didn´t realize I was in the room, trying to talk to him.

When he had died, his upset father decided that no homosexuals were allowed to come to the funeral that would be held in a secret place, and no flowers were allowed, that could indicate what he had died from, like from organisations dealing with HIV/AIDS.  Strict orders.

His father died not long after Mats, and his mother some 7 years after that. They are now buried together.

 

And here is Per-Göran, a long time survivor.

Per-Göran had another diagnosis, some mental problems, so the family never knew he had HIV. Being at the hospital was normal.

He was a good friend and supporter, and seemed so healthy that one could hardly understand that he was sick. Always on the go, many friends, very active, especially during the summers.

His death came suddenly. He may not even have known he was dying.  He was reading a paper…

 

And here is Leif, the nurse who took care of so many patients with HIV, and worked tirelessly to create a hospice for AIDS patients. He did not tell anyone, but his partner and a friend, that he had HIV himself. His death was sudden  – there was no time to bring him to the hospice  – and it was a total surprise to most  of us.

 

And finally, here I stand with Calle, holding my panel To Be a Witness.

 

Calle and his partner Tommy made their own panel with many names called Lovers and friends, Sweden.

 

Calle survived Tommy. In one of my last conversations with him, he almost crushed my heart by asking me to read a poem at Tommy´s funeral, “if you have time“… Ofcourse, ofcourse! …and during the last conversation he answered a hesitant “…yes…” to everything. I found out later, that he had had expressive aphasia.

Calle wanted to lie on black silk sheets, dressed in jeans and a flannel shirt in the coffin. He also wanted a bottle of Whisky in the coffin. That did not work, as he was to be cremated, so the undertaker, then totally liberated after all the funerals he had had with creative young gay men, poured whisky all around Calle in the coffin.

Tommy and Calle are buried together.

 

There you are,  some of the men we lost here in Sweden.

 

 

 

 

 

Matti, and the lesions…

I saw a new post on the AIDS Memorial Page, that inspired me to write about two men I knew in Sweden, Matti and Michael.

It was Mark Mitchinson, who wrote about his friend, James Harning, and posted many photos of him, also one photo where you see many Kaposis´s Sarcoma lesions on Mr Harning´s face. I was very grateful for that, because it is possible that people don´t know what it looks like.

I met Matti and Michael for the first time on December 21, 1986. I was working extra as an orderly at the same Ward that they were in, but I was not working with Matti. However I knocked on the door, and asked if I could come in and say hello, and they said yes, and I told them that I hoped to write about HIV/AIDS.

Matti was very sick, and covered in dark KS lesions, especially on his face. He was the first person I met with KS.

During the following days when I worked on that Ward I would look in, if possible. One day I handed Matti a little book with poems and tales by a French poet Marie Noël.

There were some words that I liked in a poem called Grandmother´s lullaby. It talks about going to sleep, about setting ones soul free… from all the thoughts, and all the noise.

”I see a sunbeam on the threshold of the door, just big enough to take one step…”

New Years Eve came and I wondered if Matti was alive, and he was, but on January 21st 1987, I saw his death notice.

When I interviewed Michael some time later he told me about their relationship.

They had fallen in love, and moved in together very fast. But not long after that they saw that Matti had a dark spot – I think on one of his hips – that they had not seen before, and he went to the doctor. She could not tell what it was, but when he returned to her she asked him about his personal life, and when she found out he was homosexual, she referred him to a certain hospital in Stockholm. Eventually they found out that he had HIV and that he had already developed AIDS. Michael was not HIV-positive.

Michael said that Matti was not as alarmed as he was – for some reason Matti had always thought he would die young.

This happened in the middle of their infatuation, and everything changed of course. They had to adapt to a whole new situation with hospital visits and tests and things like that.

When I met them Matti was, as I have mentioned, covered with lesions. Michael told me about one situation when the lesions even covered his eyes so he could not see. One would think that the lesions would stop, because there were eyes, but the cancer just continued, onto the eyelids.

It was necessary to give him radiation therapy, but that would not be possible to do without hurting his eyes, so what they had to do was to make incisions to insert a plate – I think of copper – between the eyes and the lesions, and when that happened – Michael fainted.

Matti passed away in the hospital, with Michael by his side. His coffin was sent to Finland, where he was buried beside his grandmother, as was his wish. It was in the middle of the winter, and for Michael it was a good experience. People were very friendly towards him.

He was only sad that Matti had been placed in a black plastic bag in the coffin, he would have wanted to open up the coffin and wrap a white sheet around him, but it wasn´t possible.

Michael´s life changed through this experience. He started working as a counselor with AIDS-patients and did that for many years – but few knew he had personal experiences. On one occasion he found it hard, it was when he had a client from Finland that looked very much like Matti, and was treated at the same hospital, and at the same Ward. That was when the past and the present collided.

He met a man a year after the death of Matti, and they have lived together ever since.

I don´t have a photo of Matti and Michael, but when I was in San Francisco in 1987, and visited the NAMESPROJECT, I made a Panel for Matti.

That Panel turned out to be on their first poster.  You can see it on the left hand side.

 

 

Your mother is coming…

I am one of the people that often write something at the AIDS Memorial Page on Facebok, when there is a photo and a story about someone that was lost to HIV/AIDS. It is just amazing that the photos and stories keep coming.

Yesterday there was a man, David Burress, who published a lovely post where he thanked all mothers and fathers that had shared their children´s stories on the AIDS Memorial Page. He wrote about them as being a blessing, and expressed his love for them, saying “you will always be a parent to us“.

I have read so many obituaries in the Bay Area Reporter from 1987 when I came to San Francisco for the first time, and until today. Often, very often, the deceased had extended families; there were friends, lovers, (cats and dogs), sometimes siblings, and now and then a mother and/or father that was grieving.

This made me think about a woman I heard speaking in one of the sessions in the Volunteer Training Program I took at The AIDS Project of the East Bay, in 1987.

She was a counselor working with People with AIDS in a hospital. She told us a story about a young man who was very sick.

He was nearing death, and was calling for his mother. The staff at the hospital managed to find her and told her that her son was dying, and could she come? She told them that he could go to hell, and hung up on them.

This was something they obviously could not tell him, so the counselor told him that his mother was on her way.  He didn´t have to worry, she was on her way.

In the end the counselor held him and stroked him as he was dying, saying ”Mommy is here, mommy is here”, and he died in her arms.

I have never forgotten this, and I have always wondered what happened to the mother, once she realized what she had done, and that it could never be undone.

 

 

Ashes

I came to San Francisco in September of 1987, after the death of my mother. I was still grieving and counting hours and days from when I had been told about her death.

One of the first persons I interviewed in San Francisco was Judi Stone, a woman who had lost her son, Michael. He was 19 years old.

We talked a little bit before we started the interview, and hearing about my grief, she wondered if I should not have waited with this work for a while, but I knew it was my way to handle it. Having experienced real grief, became almost a key for me to this work.

Before I went to the US, I had read about new ways of celebrating the memory of loved ones. I read that family and friends went out in boats and sprinkled ashes and rose petals on the water.

It was so unusual for me, that had gone to many ordinary funerals. It encouraged me, and made me strong.

There were problems surrounding my mother´s ashes, as her last husband disregarded her wish to be spread close to the love of her life, that she had lost many years ago. So, I decided to ”steal” my mother´s ashes, and fulfill that wish.

I traveled outside Stockholm and picked up her ashes at a crematorium in a forest – still a troubling memory – ordered a taxi and went to the cemetery she wanted to be in, and spread her ashes on the top of a hill immediately, like a sower, before anyone could stop me. There was only one problem – the wind twisted and turned and some of the ashes came back to me, on me.

The Second March on Washington for Lesbian and Gay rights, in October 1987 was coming up, and I heard there were aids activists who had died, who wanted their ashes to be thrown at the White House on that occasion, as a protest against president Reagan, who did not seem to care at all about all the people that died of HIV/AIDS.

It was this photo of a woman who wanted her friends ashes to be used as a protest, that inspired me to write this text, although it happened some years later.

Her name is Rebecca Hensler, and her friends name was Colin Blakeney. He was a S.F.  AIDS Activist and ACT UP member. The protest against Gov. Wilson, took place at the State Capitol in Sacramento, in October 1993.

One of the men I interviewed, Keith Griffith, wanted the White House to stand in a cloud of ashes from dead men, including the ashes of his late partner Jay, who had really wanted that to happen. I thought it was a fantastic idea, the ultimate protest. But I remember warning Keith about the ashes and the winds.

I don´t know if it happened with others– but it did not happen with Jay´s ashes, as his parents wanted to split his ashes between them. Keith kept some of it.

I went to Volunteer training in Oakland at The AIDS Project of the East Bay, and there we listened to People with AIDS, parents, friends and people who had lost loved ones.

One of the men that had AIDS, was called Charles. He was a tall man who spoke softly to us, he reminded me of the elves in The Lord of the Rings.

 

I later came to visit him for an interview, but on that day he had such anxiety, and such fear of dying that we had to give it up.  We took a walk instead, and then we said goodbye, as I was going back to Sweden.

Eventually I found out that he had died, and I got in touch with his mother. She talked lovingly about her firstborn, and told me that he was not buried. No, she kept his ashes, and would be buried together with him.

We stayed in touch for many years, a letter now and then, but since she does not answer letters anymore, I don´t know if she is still alive, she was near 90 the last time we were in contact. If she has passed away, I hope they are now buried together.

Another couple that I met in San Francisco, Keith and Gery, had decided that when one of them died, the other would commit suicide. However that did not happen, and Gery is still with us, and has quite a remarkable story that I hope to write about later. He still keeps Keith´s ashes with him on the cabinet beside his bed.

There are so many ways to deal with grief. I set my mother´s ashes free… and worked and worked, and still work.

Judi, that I mentioned in the beginning of this post – buried Michael´s ashes in the garden, so he never really left.

Judi and her husband Ralph Stone have created a wonderful garden, and they can always be together with him.

 

About Charles.

After I wrote about this, I decided to contact his mother. I wrote a letter, but wrote something wrong on the envelope. But just as I was going to write on another one, I decided to write his mother´s name and place of living on Google – and there she was, her Obituary. She passed away in the end of May this year, 2020.

I have written to both the family and the Funeral Home, asking about his ashes.  But I never heard from them.

I have his mother´s letters and will write about them in a while.

 

 

 

 

 

 

 

 

 

Just a few words…

Tim Greene

One of the first people I spoke to at San Francisco General Hospital in 1987, was an Assistant Chaplain at the Episcopal Chaplain´s Office, Tim Greene.

I ran into his name in Bay Area Reporter many years later, and contacted him. It was easy for me to remember him, but I was of course one of many people that had passed through their office.

I wrote to Tim Greene because I had seen an obituary in BAR, that touched me, maybe more than other obituaries.

It was about a man who had decided to drive out in a desert to commit suicide. He had left instructions about where he could be found – but they couldn´t find him.

I read that obituary many years later – I have saved many pages from BAR – and saw that Tim Greene was the contact person.

I wanted to know if the man had finally been found, so I wrote, referring to our meeting many years ago, but there was no answer. This was of course none of my business, but… I just hoped that the man had been found.

 

I have earlier in this blog, written about a Lay Assistant Chaplain that I have lost contact with, Laurie D., so I turned to retired Chaplain Connie Hartquist Jacobs, to ask if she is in touch with Laurie, but she isn´t.

But maybe Tim Greene was in contact, I suggested, and she informed me that unfortunately he had passed away some years ago.

I came to think about Tim Greene today, as I came upon the notes I took after talking to him briefly in the Chaplain´s Office, on September 3rd, 1987. He mentioned AIDS Ward 5 A:

I spoke to an Assistant Chaplain. His friend is dying of AIDS. He had had to stop working at 5 A to get a perspective on everything, on all the people that were dying.

  • Do you have time to mourn in between deaths?
  • That´s the problem. We are living in constant shock, as in constant combat. Everybody is dying. It is terrible.

 

 

 

 

 

A chapter never written – about Janina Ludawska 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”.

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. 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. Just a few hours after his arrival.

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 close friends, I think she wanted to be faithful to him. I can 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, and I called it “Mina föräldrars kärlek”/The Love of my Parents”.  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 Halperson. 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.

Richard and Robert.

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 (2020), 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 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…