I´m sitting here with Irene… Irene Smith.

I am spending my New Years Eve 2021, with Irene Smith.

In the post called ”I have lived on signs… and impulses…”,  I mention that I sent a message to my friend Alison, about a man who died in 1989, but was not laid to rest until his mother died in 2020.

She answered that she could not write at the moment, ”I´m sitting here with Irene…”.

I thought it couldn´t be Irene Smith, because I had seen her on Facebook not long ago, so it must be someone else. But it wasn´t, it WAS the Irene Smith we both knew, and she had just died, surrounded by friends, in her home in San Francisco, where I had once interviewed her.

It was an American friend who showed me an article about Irene Smith, in 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 and Hospice of San Francisco, as a Massage therapist.

Her story was so interesting that I sent a letter to the hospital, asking if they could help me get in touch with her.  She eventually wrote and told me to contact her when I came to San Francisco. I was also in touch with Elisabeth Kübler-Ross at the time, and she wrote that Irene was her best friend, and that I should call Elisabeth when I was in Irene´s home.

We met in her  apartment, and she brought me out on her balcony and offered me a glass of water. There was however too much noise, so we went inside.

She was dressed in white, and everything around her was white. Irene was very beautiful, but she seemed cleansed from everything. The only words I can think about are serene… serenity.

I knew she had been an actress, but had turned to drugs, and worked as a dancer and a prostitute to support her habit.  But she had somehow stopped, and was now doing AIDS work.

It was interesting to interview Irene. And a bit scary.

She would sit silent and just look at me, until I looked away. And when asked a question, she became like a computer that was stuck. She looked down on the floor, as if sorting things out in her head, and then she delivered an answer, somehow relieved.

So how  come AIDS work?

  • When do you want me to start?
  • Wherever you want to start.
  • Ok. I was lead to the workshops of Elisabeth Kübler-Ross, and in these workshops Elisabeth talked a lot about the Hospice movement. She talked about dying patients.

Irene had had a Massage license since 1972, but she had never worked with it due to her drug abuse and alcoholism, but after three workshops with Elisabeth she called San Francisco General Hospital and asked if she could become a volunteer massage therapist at the hospital. They had never heard of that, but she was welcome to come and talk to them.

  • So I went and talked with them, and in April of 1982 I started as their first Massage volunteer.

In the summer of 1982, she was asked to see her first AIDS patient. She was not sure what that meant, but was shown how to protect her self, and then she started.

  • After the first… couple of visits with this man, I realized that not only did the touch work ease a lot of his physical pain, but it also seemed to ease a lot of pain of fear and isolation that was experienced with his friends and lovers, and whole support network.

Irene said that fear and isolation in the country in 1982 was so great, so that even if you had a network of friends, you were not touched, and friends did not stay close, because they did not feel safe.

  • So the simple fact that I was massaging him, I was touching and communicating, made things easier. So I decided that that´s where I needed to put my time and energy.

The word spread, and more and more people wanted to take part, because they were not touched, nor loved and nurtured, Irene said.

  • In 1983 when the 5 A unit in San Francisco opened, I asked them if I could go room to room in the 13 bed unit, and offer the service once a week, and they said; ”Well let´s try it.” So I started working up there, it was a Friday night, and I´d go in about 4 in the afternoon, and I´d stay until 11 or 12 o clock at night.  And the therapy was beautifully received, not only by the patients, but also by the Medical  staff, so by the middle of 1984 I was seeing patients at Hospice, I was seeing patients in my home, I was seeing patients in their homes, and I visiting the 5 A unit once a week, seeing patients.

Irene worked 7 days a week on a voluntary basis, and she was eventually given money by the AIDS Emergency fund, SHANTI and the Hospice she was volunteering at, so she could stay in the field, as she said. It was 700 dollars a month.

She was asked to train other volunteers, and it grew and grew, and eventually she created a program called Service Through Touch. Irene was asked to teach and do workshops both in the US  and Canada, and in Europe. I had hoped to go to a training in Copenhagen in 1990, but I was pregnant at the time and got sick and could not go.

I want to move on to the later part of the interview, when she spoke in a more private way about her life. Today I find some of my questions insensitive, but she answered, and I am grateful for that.

Irene was extremely busy when I met her, she was doing  workshops, had emotional support groups for volunteers both at Hospice and at the AIDS Ward. She also gave massages her self to make a living.

And here I started asking questions about Irene, and later wrote on the side: The big silence. The interview with the long pauses.

I wondered about her time as an actress, how long had she been active?

  • I don´t  really look at years of being an actress. I was a drug user and an alcoholic for 15 years, and a prostitute for 9 years, and in the… I really lose track of time there…Oh, probably not more than two  years.

I wondered if she had memory blocks from those years, and she repeated my question and sort of froze, and her eyes penetrated some memory,and then she continued:

  • I don´t necessarily have memory blocks. I´m very lucky to be alive! I was extremely stoned, I was extremely drunk, and the Los Angeles years are very very vague to me, which is, you know, ok…

Irene talked about the theater – and film business, about being young and vulnerable and beautiful, and people not necessarily being interested in her ability on stage.

  • How do live apart from giving massages?
  • What do you mean, how do I live?
  • It´s a private question. How do you live? Do you live alone?
  • … Yeah I  live alone with my cats… when I´m not working or doing a workshop, or… I prefer to spend my time alone…and for me a social life is taking a very long walk in the park, going to look at nature… or taking a long hot bath, or doing the sweat-treatment, or…sitting in the sun… those things which connect me back to nature, so that´s how I live. I live very simple.

Here started my insensitive questions, where I asked if she had a lover, and asked a Why, when she said no.  Some part of my brain did not connect with the fact that she had spent 9 years as a prostitute, and had probably seen the worst side of humanity in many shapes, and been used and abused.

Irene told me that she chose to not have a lover. She could not see how a lover would fit in to her lifestyle, nor where she would  put one on her schedule.

  • There are times when I feel that I could certainly use to be held, or… loved and nurtured in some way…but I seem to… have those moments very rarely, maybe once every couple of years… Yeah, that´s it.

And then there was silence.

  • I get as silent as you do between questions…But, if you give a lot, do you get as much back as you give?
  • Yes…I think this life, for me, is about… learning to love and accept my self… and it is about… raising my self esteem… and those points are fulfilled in my work… I don´t really have a division between personal life and work… Am I answering your question?
  • Yes!

Here I started laughing because she was so peculiar, every word seemed to be so incredibly measured and weighed and a sentence was not delivered until it was really ready.

I said that her work with Elisabeth Kübler-Ross must have changed her life. Irene talked about her life with abuse and prostitution.

  • When I went to  working with Hospice, I really didn´t come from a standpoint of ”I want to do service for these people” – I wasn’t coming from that concept. I was coming from the point of having been very opened in several workshops over a period of a year with Elisabeth, and reached a point where I was very confused.

The lifestyle I was living did not fit the personality that was coming up in me. It did not fit the vulnerable child that I seemed to be, at that period…and I didn´t know any other way to support my self, plus I really didn´t know how to go out and be part of the society.

I didn´t know anything but drugs and alcohol and prostitution, so… Elisabeth had talked about dying people being… very loving, very accepting, very open, and not concerned with cars, clothes, the latest theatrical presentation, or the most modern of conveniences. They were on a different path, and so I thought: That is the group of people I need to socialize with,  it´s dying people.

So Irene started working, silently touching the sick and the dying.

  • So what I did the first years of being with dying people, was reinstate… my…sense of…I came back to life with dying people. Ok?

Irene said it was a perfect setting for her, she could  be her self, she didn´t have to talk about things she didn´t know about, because, as she said, she had always been in the whore house on drugs. And she laughed a little.

  • As a matter of fact, the first two years of my volunteer work, I continued to support my self through prostitution. I´d do my volunteer work, you know,  in the day time, and late in the afternoon I´d go work in the House.

Here Irene laughed a bit, and I laughed a bit, not at her, but at the absurdity of the situation.

  • Hey! I continued to support my self that way until the community gave me funding, and then I was able to quit, because I knew I was on the right path.

Irene continued, saying that she had NOT supported her self through prostitution since the latter part of  1983, but there had also been other changes, because she had gone through another transition.

  • It took me from 1983 and til 1985 to get comfortable with living people. And starting about… the middle of 1985 I started being comfortable enough to NOT fill my days with being in the rooms of the dying, but have been able to orient my self more in to being with groups of living people that have an interest in the work. And it´s still very scary for me… but that´s the way I´ve reoriented myself back in to society.

Irene talked about how her work has changed. When I met her in 1987, she was working more with newly diagnosed people or people that were doing well on alternative therapies, she said, it was more helping them live with a quality to their lives, rather than helping them accept death.

  • See, when I first started I literary went from room to room of dying people, not just advanced stages-people, not just sick people, but last few months-people, or last few days-people, and after a few years of that… It used to be, if you didn´t have AIDS, and if you were not dying, I couldn´t possibly see you. Because… dying grabs our heart, you know, somebody dying sort of rips our hearts open, and I really needed… something that GOT my attention, and that really RIPPED my heart…                                                            The bird drinking water out of the fountain – if you really sit there and watch it, it will very much open your heart, and sometimes to the point of tears, because of its gentleness. But is has taken many years of extreme conditions of life, before I´ve been able to see the gentleness and openness in a bird, if that makes sense to you.. Yeah, so the work is changing. She laughed a little.
  • Will you be able to be only with people who are not sick and dying?
  • That´s a very broad question, because we are all sick and dying.
  • Ok.
  • I am finally being able to see, thank God, I am finally being able to see pain, without it being… pain of someone covered with lesions, gasping for their last breath.

Here Irene stopped her self, but said that she would continue her work with people with AIDS.

I asked again about her personal life, if she would be able to let someone in to her life, to live with, and she thought that was possible, but as she said, it was not her focus, and she had so many people in her life.

  • I need at this time to do what I need to do… I am definitely healing those places in my self that need to be healed… and I think that I´m on schedule, if there is such a thing, with my healing… I don´t know, but I think that for my ultimate healing in this life, I will need to have a… personal relationship, at this particular period in my life, one with my self, is…very needed.

We moved over to the massage, and I will not write so much about this here, only a few things.

  • We give massage, primarily for  relaxation and pleasure. The patient may be under a high level of stress, due to fear, pain and  anxiety on physical and spiritual levels. Slow, gentle, loving touch, is used in order to offer the patient a time of peace and quiet.

Irene talked about being able to feel compassion and love for our selves, then we can communicate that to another person, by touching them, stroking them.

  • With loving them with our hands, if you will…

Irene mentioned different situations, just touching someone with a slow caring attitude.

  • Just the way that someone walks in to a patients room and says: Hello, and maybe that person connects with that persons eyes, and really looks at them, and  maybe the person is coming to the room, stops and takes a breath and breathes with that person – that´s a massage, that can be the most beautiful part of someones day.

For me, touch is not just a hand, touch is the eyes, touch is the breath, touch is the voice, touch is the body movements, and last, but not least, touch is the hand. But touch incorporates everything about our presence.

Here Irene talked about our own pain, how we need to address it, and work with it, if we are to help other people.

  • And that is whats needed with people with life threatening illnesses. It´s the eyes, it´s the breath, it´s the voice, it´s the rhythm – none of which we can connect  with, or use to connect with another human being, if we are all blocked up with our pain. The only thing you can do is heal your self to the point that your presence is healing to be in. You can only heal your own pain, to the point that you can sit with someone else who is in pain, and its bearable for you to be there.

Later we called Elisabeth Kübler Ross, and I was invited to come to a workshop on Death &  Dying, in New England.

I took some photos of Irene. It was too dark, but she is there, with a little scratch on the film:

I stayed in touch with Irene Smith, for a while, but we unfortunately never met again.

But to my joy I found that she was in the film about the AIDS Ward at San Francisco General Hospital, ”5B.”

There is so much more to read on her own page.

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

Here is an obituary, Irene Smith passed away on April 4th, 2021.

https://www.ebar.com/news/news//304349

I posted this, and then it was 2022.

 

 

 

 

 

 

 

 

 

 

 

 

The Death of a Young Man…

The Silent Suicides… The Secret Suicides…

I am really grateful to The AIDS Memorial, because it shows that it is not too late to write. I mean now, often after many years, people write about the death of their loved ones; partners, children, parents, friends – it is like the NAMES Project, not with Panels, but with photos and words.

I recently realized that I have written about the sudden death of my mother many times on Facebook – as if my relatives and friends have never heard about it before. It was quite embarrassing, but I know I did it because her death affected me so much.

But I don´t think I have written about a friend´s suicide, quite as often, although it was something that also affected me strongly.

Here is Per-Erik.

When someone very happy and positive suddenly commits suicide, it is very upsetting, because there is no warning. If people are depressed a lot, at least one can understand, but…

At the time of my friend´s death I connected his suicide with grief. He had suddenly lost his mother a few years before he died.

She went upstairs to have a rest after Christmas dinner, while the other family members took a walk with the dog, and they found her dead when they returned home. I don´t think my friend ever recovered from that shock. He was very close to his mother.

He was a young man from the countryside, and in 1984 he had just graduated from a Theater school in Stockholm, he had been hired at a Theater, and had landed a role on Swedish television. Everything was wonderful, and when I met him the last time he was almost glowing. We hugged and said goodbye.

I think one can postpone disaster.

If I understand it right, he kept him self very busy after the death of his mother. He rented a room in the home of an older actress, he studied, he kept him self very busy in the evenings, and was never really alone.

He went home that summer, and came out as gay to his father. According to one of his sisters it was met with silence. Coming out as gay during the first years of HIV/AIDS, can not have been easy.

The family eventually helped him move to the new city, and for a short while he shared the apartment with another actor, until that actor found his own place – and then my friend was alone for the first time in several years – and that is when he died.

He had hung him self in a closet. His former flatmate found him, after he had failed to come to rehearsals.

He had left some small messages on a table, but no suicide letter.

 

After my friend´s funeral, I happened to meet a man that was working in the church, in the parking lot, and we started talking.

He told me that my friend was the fourth or fifth young man, from that area, that had committed suicide around the same time.

And that was really … Was it a suicide pact? One can assume that they knew each other as they were from this little city, so did they trigger each other for some reason?

At that time I did not connect any of this to HIV/AIDS.

 

Many years went by, and after my retirement I moved to a city not far away from where my friend was raised.

I had hoped to finally meet my friend´s father, but he was very sick, and passed away not long after I had tried to get in touch with him.

And I started to think about the other young men, it left me no peace.

I started to ask around. Did people know about these young men? Was my friend the last one, or did others follow him?

I eventually found out that several of the young men were homosexual, maybe all of them. And it made me wonder if they killed them self to spare their families, protect them against the shame in that little city – if they were all homosexual, maybe they were also affected by this new disease that struck homosexuals? Or the suspicion about it. Maybe it had nothing at all to do with that. But nevertheless several young men had died in that city.

I was thinking about their parents, their siblings. Had they known about the other suicides, or was it kept a secret.

I interviewed a nurse in Sweden, Leif Larsson, who worked with HIV/AIDS-patients for many years, and he talked about ”the Silent Suicides”, where people just killed them selves, they didn´t say anything, they did not leave a letter, they just removed them self from this Earth. I think one can add my friends suicide to that group, even if he just feared he was infected.

I went to the church in that city and suggested that it should be addressed. Maybe it would help the surviving family members, if there was a church service about suicide – then it could come up naturally.

There was a service, but it did not take place in the big church as I had hoped, but in a very small church, outside the city. And not much was advertised about it.

I was supposed to speak, but just before the service began the priest asked me to speak after the service when coffee was served, but I refused – my friend´s family members had arrived, and I wanted to acknowledge him, and the other young men, in the service, in the church.

I talked about them, while the priest stood very very near me – she seemed to be worried that I would say something inappropriate.

At the coffee there was a woman who talked on behalf of Suicide Zero about the death of her son – and all that was well – but it had little to do with what had happened in and around 1984, in that area.

I am quite sure I know the reasons why it all became so strange – it had to do with protecting the man that had once spoken to me in the parking lot. He had not mentioned any names, but he had talked about the young men, and I think it is called that he broke protocol.

But it must also have had to do with guarding the memory of the young men.  And their families. So it was impossible, it really couldn´t be addressed. But they were at least mentioned in that service, to a handful of people.

I know there were many suicides in connection with HIV/AIDS in the US, I have read articles about that, and I have become aware of several suicides there that can never be talked about. Silent, secret suicides.

However, I did write about a suicide last year, or actually a suicide-to-be, in a piece in this blog about Robert Locke, called:

What can I say, I´m BOB. Please scroll down.

The death of my friend… He died before there was a real HIV- tests. I have found out that he was worried, because he had had a few relationships, but who knows… I just think it was too hard for him. He had said to a former partner that he thought it was hard to find love. Sex yes, but not love.

I want to finish this piece with a story that the former partner told me about him. The way he was.

He had decided to kill him self by jumping down from a high place in Stockholm, and he started climbing over, but a man that was passing by caught him and saved him from falling. But that man was so upset about what had just happened, that my friend comforted him, instead of dying.

He is now resting with his parents in a little graveyard, surrounded by fields.

 

 

 

 

 

 

 

You either lose it completely…

In 1941 a book called ”Escape from Paris” was published in Sweden.

It was written by Lo Håkansson, a Swedish journalist.

For some time I have wanted to quote a piece in her book, about something she experienced during World War II, it was the bombing of a train station in Tours, France, with many casualties.

”When it was all over, I sat down at the same place where I had been standing all the time.

I was terrified over my self. How could one become so apathetic so one could calmly look at the shambles, calmly look at how the dead and wounded were carried away.

I did not understand my self any longer. I thought I knew my self rather well, and although I was sort of prepared for experiences, such as the ones I had just lived through, I had expected that some kind of reaction would appear.

That there didn´t seem to be any reaction at all, I assumed depended on a lack of feelings and compassion.

It wasn´t until much later that it dawned on me, that this was the way I reacted. You either lose it completely in sight of all these insane war experiences, or you become like a stone.”

I had a similar reaction, when it came to HIV/AIDS.

So many people died. It was funeral after funeral. And after a while I didn´t feel anything. It was time for me to go.

And still the experiences I had were limited in comparison to what the hospital staff and volunteers experienced in San Francisco, with so many people dying. I was allowed to be an observer at a Care for Caregivers workshop in San Francisco in 1987, and saw people there that were stuck in grief, overwhelmed by all the death, unable to cry.

In the end, after my son was born in 1990 – having interviewed and followed sick and dying people all through my pregnancy – I decided to not get to know any new people with HIV/AIDS, just keep on following the people I already knew.

Eventually I started to feel again, remembering certain things that moved me, like…

Ron making a final grand gesture, because it can´t be over, booking tickets to New York on the cruise ship Queen Elizabeth.

Torgny having decided to make it home by him self, hardly being able to lift his foot on to the pavement.

Carl asking me to read a poem at his partners funeral… ”If you have time”.

And Lars, whose self portrait covers my Swedish book, I can picture him sitting down, trying to dry him self after a shower, a little area at the time, having no strength.

Lars trying to strike up a conversation with an old neighbor over the fence, but the woman continues to walk…

Lars talking in the night, not understanding he is dying, not understanding his lungs are filling up, talking and talking, worried about someone else… until his partner realizes that he has died.

Memories, lines, reaching my heart.

I took these photos of Lars in Greece, 1980, about a year before his journey to New York, where he thought he got infected with the virus.

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, Alison. 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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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? Some of the men we have lost in Sweden.

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.

Please see what I wrote in the piece: I have lived on signs and impulses…

There is more there about Charles and his mother.