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 counselor´s, 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 in a conference. She said she was living proof, that women can get AIDS.

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, but I don´t have access to them, because Michael Crisp has passed away since.)

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 ccourse!

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. You said: “I´m living proof that a woman can get 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, as death moved closer, you 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 crave my attention but demands it as your “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 was:  I love you Dear one, with all my heart !!!

She signed the letter with the name: Spoken sky

Here is the late 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.

 

 

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 “BAR- Angels”, 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, they 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.

One of the nurses in the film, Alison Moëd, 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-nazis.  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” by Henry Scott Holland (1847-1918), and 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.

 

 

 

 

 

 

Richard Locke – A Swirling Dervish!

Richard Locke – A Swirling Dervish!
I was hoping I could do this work in a chronological order, but things happen, so I will improvise now and then.

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

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

When I interviewed Richard in 1987 – and that was a wild interview that I will write about later – he told me that AIDS was behind him… He had become an activist, trying to smuggle medicines from Mexico. He wanted to fight, he wanted to raise hell, and become a Swirling Dervish!

I looked up Richard on the Internet, and there are ofcourse many photos of him, but also of his grave. See: Find a grave, USA. Richard´s full name was Richard Holt Locke.

Robert Locke has written about his brother. See: A Biographical Fragment of Robert and Richard Locke.
”Robert Locke´s account of his brother Richard Locke´s struggle with AIDS.”

*

Before I went to the US and San Francisco I spoke to a woman at SHANTI.
She told me two things; that she personally knew 12 people with AIDS, that she could help me get in touch with, and, she told me to not get stuck in my original idea – because once I came to San Francisco I would find out that there was so much to take in. That turned out to a be a very good advice.

I went to see her when I came to San Francisco, only to find out that she had quit, and that noone was aware of what she had promised me.

I later found out that there had been and still were big problems at SHANTI, which was why she and others, had quit. At the time I just knew I had to start all over again, and I was eventually given some names. But it took time, because people were tired. They were sick and people from all over the world wanted to interview them.

I was told about one woman, Meredith Miller, that she was broken by all the interviews, so she could not be approached. But, through all sorts of twists and turns, we ran in to each other several times, and she eventually became very important to me and my work.

I think the fact that not everything worked out as planned with SHANTI, forced me to start looking in other directions, and really be open to what came my way; Have you heard about Open Hand? Have you heard about Coming Home Hospice? You should really go to…

I knew I wanted to go to San Francisco General Hospital, (SFGH), to find the nurse, actually Head nurse Alison Moëd, at the AIDS Ward 5 A.
I went there, but I didn´t dare to go in and disturb them, so I stood for a long time in the door way, trying to get a glimpse of her… We eventually got in touch, and I´ll write about that later.

When I was at SHANTI, and listened to a presentation about their volunteer work, I met a man from Church of Sweden, who had read a book I had written about dying patients. It was a pleasant surprise, that he knew about my work.
I ran in to him again, this time at SFGH, where he was to visit the Hospital Chaplain´s office, so he took me with him, and that turned out to be a blessing, and also a natural way in to 5A.
And much more.

Not better than a pimp…

Not better than a pimp…

During the summer of 1987, some drastic things happened to me.
I received a scholarship, so I could go to the US to interview people with AIDS, and that made me contact several organisations in New York and San Francisco, like People With AIDS Coalition in New York and SHANTI in San Francisco.

My mother died suddenly on June 30th, and although expected since childhood because of her substance abuse, it was shocking when it actually happened, and I was quite out of it for a while. But work has always helped me, so I concentrated on the upcoming journey. My mother was a journalist, so I pretended that we now worked together, and I constantly talked to her.

As mentioned before I worked in a graveyard in 1986, so when problems occured with my mother´s ashes, I didn´t hesitate to pick her up at a crematorium (in a forest, that was creepy!) and spread the ashes myself. The wind twisted and turned while I was doing it, so I came away from that experience with ashes actually all over me.

Before I left, I watched two documentaries on AIDS in San Francisco, and I specifically noticed three people; a former Mormon, a pornstar and a nurse at San Francisco General Hospital.

I came to the US with a Letter of Recommendation from RFSL, the gay movement in Sweden, and names of people I had been told to contact.
I had already made contact with Missionaries of Charity that had a hospice in Greenwich Village for people with AIDS, Gift of Love, and Bailey House that helped people with AIDS in low income – they still do. I hade also contacted Hale House in Harlem, because I really wanted to meet Mother Hale, who took in babies with AIDS.
Visiting New York turned out to be rather overwhelming. I was not prepared for what was to happen.
What I will write about took place during two or three days.

Meeting Mother Hale, or Clara McBride Hale, was very nice. She was rather old then, born 1905, and she did not say much, but I was happy to have met this good person, who took in more than 1000 children until her health declined. Unwanted children, crack babies, children with HIV/AIDS. When praised, even by President Reagan, she said that she just loved children.
I was shown the day care center, and she told me that they did not test the children for HIV, they just assumed that they had the virus, because their parents were either sick or dead.
She introduced me to her daughter, Dr. Lorraine Hale who was a cofounder of Hale House, and also worked there. She really surprised me, when I told her about my work, and what I wanted to do, by asking, as in disbelief: Do you touch them?!
To this day I wonder, if it was so dangerous, how she could let her mother do the work she did?

(There is a lot to tell about Dr Hale and what happened after the death of Mother Hale in 1992, but this is not the place. One can Google about it. )

I had been in contact with Mother Superior at Gift of Love in Greenwich Village, and I was invited to visit, but when I came there I was stopped just inside the door, by a very angry nun. Who was I? What did I want?
Mother Superior was out of town, and I could not prove we had been in contact, so I just had to leave.

Sal Licata, a well known AIDS activist in New York told me about Gift of Love. He said it was actually an alternative prison for people with AIDS. They lived and died there.

I should write something about the people I write about. So many of them have died, and some people that reads this probably knows that Sal Licata died many years ago, but I would forever have to write the late Sal Licata, the late … so I have decided not do that, their deaths will come up eventually.

A more positive visit was at the office of People With AIDS Coalition. They had a little house in a garden, and I spent some hours there, helping out by folding papers and putting them into envelopes, and then I watched a makeup artist teach a man with AIDS how to cover the Kaposis Sarcoma lesions he had on this face.

I was invited to visit a hospital in the Bronx, where they treated children with AIDS. The nurse that had invited me was very serious when I came. I had to leave all my belongings in her locker, and she searched me, to make sure I did not bring a camera with me.

I was to meet a child with AIDS, and she brought me in to a rather dark room, where a little black boy sat alone in a crib. I do not know if that was where he slept, or if he was placed there for me to see him.
The suspicion against me was palpable, that I had a camera stashed away somewhere on me, but I didn´t. It is only for my inner eye, that I still see this little boy, alone in the crib.
I don´t remember if I touched him, I really hope I did, I just remember him standing up in the crib, wanting to have contact. It was the saddest moment.

The nurse told me that the children in the ward had never lived anywhere else. One good thing had happened, and that was that they had been given a van, so they could take the children out on trips.

My final meeting in New York, was at Bailey House in Greenwich Village. I was told that they took in people with AIDS on low income.

I had booked a meeting with a man called Dave.
I introduced my self and my idea and asked if he could help me meet someone with AIDS, to interview. But, his reaction to what I said was dramatic.
No, he told me. Nothing I said was true. He angrily told me that I was a user, and that he would not be better than a pimp, if he helped me, and I better be on my way. Trying to reason with him, was impossible.
I somehow managed to get out of that office, in tears, and after all this, I knew I was not going to be able to do any work in New York.

But why did all this happen?
The press had obviously been trying aggressively to get glimpses of people with AIDS, even children with AIDS.
Sal Licata told me that People Magazine had lured a woman with AIDS, at Bailey House, and had taken photos of her in the bath etcetera. And there had probably been other things happening.

But this was the final straw for me, and I left for San Francisco, thinking it might be different there.
I was hoping to meet the former Mormon, John Lorenzini, the pornstar Richard Locke who created parties at the AIDS Ward in San Francisco General Hospital, (together with a woman called Rita Rockett), and the nurse, Alison Moëd and others. And I did.

I did not know what to do…

I have realised that I have to go back and forth between what happened years ago, and what happens now.

Tomorrow I will speak for a group of HIV positive people at the Posithiva Gruppen/The Posithive Group in Stockholm, and tell them about my work in Sweden and in San Francisco, between 1986 – 2018.

The first time I spoke for that specific group was in 1992. I had been back and forth to San Francisco, following up interviews from 1987, and I was going to tell them about the people that I had interviewed. But as I stood there, it struck me that most of the people I had spoken to had since died, and that the men sitting in front of me… I just froze for a while, and then I almost jumped! from the subject, and started talking about the Names Project. I had brought fabric and pen´s with me, and suggested that they should do a Panel for their friends that had passed away, and they immediatly started.

They called it Lovers and Friends, Sweden. 

I did one too,  called To Be a Witness – a Book to be. 

The two men holding the Panels were Tommy and Calle, a couple. Very nice people, a great support.

Tommy, who stands alone, became very depressed at times, and he was saved from several suicide attempts. He became blind, and died in hospital, after a sudden desperate burst of hope, because of DNCB.

Calle was struck with a number of diseases; expressive aphasia, brain damage and paralysis on one side. He only saw two colours, green and red, and the nurse that took care of him, said that he was “lonely in his brain”.  He died about a year after Tommy.

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

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

 

When we had made the Panels, they were sent Express, Door-to Door, to Washington, DC, and one of the volunteers found them, so they were part of the display of the AIDS Memorial Quilt.

Tomorrow I will speak for a group of HIV positive people, I don´t know if there are any long time survivors among them, but after all those years, the situation is quite different from when I stood there, not knowing what to do.  I will tell them this story.

 

 

 

 

 

 

 

Some words, while I recover…

I was going to write a piece about my attempts to talk to people in New York in 1987, but I´m sick in a mixture of asthma, allergy and very strong Granchild-germs.

But I want to leave you with some words, that have been on my mind lately.

I think it was in 2014, that my friend, the late Michael Crisp, took to me the  National Aids Memorial Grove in San Francisco, where names of the dead are engraved in circles.

He showed me a poem by Thom Gunn (1929 -2004), that is also engraved in the monument:

Walker within this circle pause
Although they all died of one cause
Remember how their lives were dense
With fine compacted difference

 

When Angels smile…

A little bit more about the name of my blog.

When I came to San Francisco in 1987, I got to meet the late Gary Shepard. He was one of the ”Emotional volunteers” at SHANTI.
Before I met him, I spoke to another volunteer, Brad, who turned out to be HIV positive, and he really admired Gary because of his commitment to his clients, and said that if he got sick he would like Gary to be there with him, as a volunteer.

I interviewed Gary about his work, and he told me about some of his clients. I want to tell you about one of them, because even I met him, at Coming Home Hospice, in the Castro District in San Francisco.

Ed hade dementia and could no longer speak, but the could do two things; smoke and smile.
He was lying in his bed smoking, skinny arms and legs protruded from the white sheets. He was not to be left alone while smoking, so there was always someone with him when he smoked. Even I, who was a smoker at the time, spent some time with him when I visited Coming Home Hospice.
But that was not the only reason why people entered his room, they came because of his smile. If I should try to liken it to something, I would use the words angelic and Infinite goodness, and you wanted to be smiled at like that, over and over again, it was almost addictive.
When Ed was dying he was given Oxygen, and Gary told me that Ed moved his hand, slowly, back and forth, back and forth, as as if he was still smoking. Gary stayed with him until a few hours before his death, but as soon as Gary had come home, they called from the hospice and said that Ed had passed away.

Gary talked about his work as a volunteer. He described himself as a witness to the suffering of his clients. If no one saw what they were going through, it would be meaningless. I liked those words, and decided that my work was to be called To be a witness, since I am a witness.
Many years passed, and there was and is, a silence around hiv/aids, and when my book about what I had seen in Sweden came, I called it Det är få som talar om dem/ There are few who talk about them.

When I had decided to write a blog about what I had seen in San Francisco, I searched the Internet for the words To be a witness, but often found religious pages, religious testimonies, so I added the word really, and that worked: To really be a witness. To really see, and really hear.

Gary and Ed are just a few of the people I want to write about. I was lucky enough to meet so many ”teachers” in San Francisco, clients, lovers and familymembers, volunteers and hospital staff, that I followed, for as long as it was possible.

I want to end by saying that Gary, that we will hear more about in the blog, kept Ed´s ashes in his home for four months, when he, together with a friend of Ed´s, spread his ashes under the Golden Gate Bridge.

In my own family…

I come from a Pentecostal background, and I have always admired and somtimes envied my family,  for their very strong belief´s and their trust in the Lord.

But I have met resistance against my work, from some familymembers, both in Sweden and in the US. That has been surprising for me, because of the families missionary work, in Africa for example.  But the resentment has had to do with homosexuality.
My favorite old aunt called and warned me, not only for the sake of my soul, but also because she was afraid I would hurt the family. The only thing that could save a person, she said, was salvation,

Even my fostermother was against it, so when I refused to quit, she wrote that we were not to have contact for a year.
However, two things made her change her mind; the sudden death of my biological mother, and the fact that Sighsten Herrgård, a famous model and designer, came out as having AIDS. He was friends with members of the Royal family, and that helped. One of the princesses, Princess Christina, appeared with him on television.

When I came to San Francisco in 1987, and met some of my familymembers, it turned out to be very upsetting for some of them, that I was there to interview people with AIDS. Why would I do that?!
I tried to explain, and talk about all the diseases that befell people with hiv, how ostracised many were, and… But I could not get through, and they decided to leave. (There was one exception: One of my cousins, held my hand under the table.)

I was not in contact with those familymembers for about ten years, until one of them apologized, blaming his behaviour to lack of knowledge about contagion – his old mother had been present, and he had stopped me from hugging her, or even shaking her hand when we said goodbye, and I never saw her again. Nor did I see my favorite old aunt again, she wold not let me in to her house on my return to Sweden, and she passed away not long after that.

Many years passed, and Facebook came, and I became friends with the people that had been in the meeting, and several other family members from Canada and the Los Angeles area, like my cousin Billy.

One day Billy asked me why I posted so much about HIV and AIDS on my Facebook page; links to SF AIDS Foundation, SHANTI and Open hand, etcetera. I told him about my work, and then he wrote:

My daughter died of AIDS.

I couldn´t have been more surprised. Someone in our famiily had died of AIDS… and I had never heard about it. Her name was Shannon. She was 25 years old when she died, in 2002.

Billy had suddenly received a phone call that his daughter was sick, and would be coming on a plane to Los Angeles. She was a travelling sales person, and there were long periods when she did not see Billy and his wife Sharon.
He went to the airport, and saw when she got off the plane that she looked sick, and that she had lost a lot of weight.
Shannon had had some kind of seizures and was taken to hospital, where it was discovered that she was HIV-positive, but also that she had developed AIDS.

Billy have friends that are gay, and they helped him get in touch with an AIDS clinic so that she could start antiretroviral treatment.
Sharon and Billy took care of Shannon, and they tried to help her gain weight and strength, but one day Sharon called Billy at work and said he had to come immediatly, because Shannon was having new seizures and the ambulance was on its way.
The ambulance was still there when he arrived, he ran into it and told Shannon that they would be coming right after. She said ”Daddy, it will be alright,”, and then the ambulance left.
But on the way to the hospital Shannon had a massive heart attack, and died, so when Billy and Sharon arrived at the hospital, they were just informed of her death and taken to her body. This was three weeks after she had come home.

Billy wants me to talk about this, to make people understand that this can happen to everyone, not only to certain groups. Shannon had no idea that she was HIV- positive, she only thought it looked good that she was losing weight.

Billy took me to her grave in 2014.

Some of the people in my book…

When I was in San Francisco in 1987, somebody taught me the words ”How to do AIDS”.
People really ”did AIDS” in different ways. I know of people who almost immediately arranged for their funerals, whereas others totally ignored the virus, and concentrated on something else.
I was told about a man in San Francisco, who had bought one of the Victorian houses. His last phone call in life was about a specific detail in the houses´s wood.

Benny Henriksson

A man I knew, sociologist Benny Henriksson, worked at the hospital, in his room. He actually got his Ph.D, in the hospital bed, about a week before he died and he continued to work on an article he wanted to complete. In his obituary the author´s wrote that the hospital staff patiently climbed over wires to his computers and printer. And what did he write about? Other people with HIV. His doctoral thesis was called: Risk factor love: homosexuality, sexual interaction and HIV prevention.

Kerttu Sturesson

I have interviewed an assistant nurse, Kerttu Sturesson, who from the start completely gave her life to work with people with AIDS and was really praised for it. Kertu said that the worst day of her life, was the day she had to retire.
One of the stories she told me, was about a man who had just been told he had HIV by someone else in the hospital. He stopped for a moment in her doorway, and said:”I am going to kill myself“, he then walked away in a haste. She got up, ran after him, stopped him, brought him back to her room, talked to him, and that man is still alive today.

Leif Larsson and Krister Pettersson

Leif Larsson, a nurse, working specifically with HIV/AIDS, told me about the many silent suicides that took place, where gay men with HIV just removed themselves from the face of the earth, leaving no letters, no explanations, nothing.
Leif got involved with funerals, together with Krister Pettersson, an undertaker, because no one had thought about informing the undertakers about HIV/AIDS – and they were very scared.
Not only them, but the whole chain of people that were involved with Death; from the people picking up the body from the home or the hospital, to the autopsy technicians, that out of fear of being infected with HIV by the needles, would not sew the bodies together after autopsy – so the bodies were just put in a black bodybags – to the undertakers that did not want to open those bodybags to dress the bodies, or to let the families see… The list goes on and on.

Leif and Krister gathered all the Funeral homes to inform them about HIV/AIDS.

One of the stories in the book is about a young man called Pontus. His brain would swell up and press against his skull and he was in a lot of pain, so he sometimes had to call for an ambulance. Since he was so young, the ambulance team would become suspicious, and ask him, in a very sarcastic way, if he had AIDS too.
When Pontus had died, in his home, his family had arranged his body and placed a flower in his hands, but when the men came to take him away, they just let him fall down on the stretcher, like a sack of potatoes, so his arms and legs fell out to the sides. Pontus´s mother, crying, told me about this final humiliation of a young man who had just turned 25.

Krister Pettersson, became very much involved with HIV/AIDS and together with many of the young men, that knew that they were going to die, created wonderful funerals. He said they taught him a lot because they were often very creative people.
For example, he worked with one of the young men in the hospital, visiting him on the AIDS ward and they had put together a program of wonderful music and Krister thought that they should listen to it, almost like a dressrehearsal. The young man however, died.

Leif Larsson established a hospice outside of the center of Stockholm; Maria Regina Hospice, and put a lot of effort into it. Unexpectantly,I found out he had died – he had told very few people that he had the virus. He died at home, in the presence of his mother, his partner and a Catholic priest. The person that took his body away, was Krister Pettersson.

Ulla Britt Persson

I often saw a woman in one of the hospitals, Roslagstull. She had black hair, make-up, jewellery, she wore a black leatherjacket, high heeled shoes and a clerical collar, as she was a priest in the Church of Sweden.
I did not know anything about Ulla Britt, but I found her to not be like other priests, she was just so unusual.
Ulla Britt´s son, Johan, had died of aids in the hospital I had seen her in. On her visits to Johan, she met many men with aids. Ulla Britt would go around in the evenings and visit, and pray with them if they wanted to. She conducted the burials of many of these men.

Ulla Britt´s son Johan had been studying Theology, and he had been seeing a priest, the priest that would later bury him.

When Johan passed away, Ulla Britt was approached by a doctor who wanted to do an autopsy on him for science and she said no. He has been used enough. The doctor replied, You know we can do it without your consent? She still said no.

Ulla Britt knew what would happen, so she travelled with her son´s body together with Krister Pettersson, the undertaker, to the morgue. She covered her sons body with roses, locked the coffin, and kept the key and to this day she still has it.

Ulla Britt knew that Johan had gotten the virus from the priest, and that this was a difficult situation. The priest eventually became very sick. One day Ulla Britt was approached by a friend of the priest, who said that he couldn´t die – he needed her to forgive him, he needed absolution. She said she would think about it, but he suddenly died, before she could visit him.

After my book was published, she told me this story:
Before he was buried, she went to the morgue. She said he was so small and thin, and looked so cold in the coffin – she wished she had brought him a blanket. She forgave him when she was standing there.

The priest had no family and is buried next to the church that he worked in, together with his cat that had died some time before him.

Rolf Veidahl

I finally want to tell you about Rolf Veidahl, a Norwegian man, living in Sweden. He was a warm teddy bear of a man, who totally baffled me by telling me that he had really struggled to get AIDS.

Rolf had a very selfdestructive side to him. It had to do with sexual humiliation, with emphasis on humiliation. He strived to be infected with the virus over and over again, and he exposed him self to many difficult things, dangerous encounters with men for example.

I was stunned, and did not know what to do with this information. In the end, I sent him the interview, writing that I felt that our interview was part of the humiliation that he exposed him self to and that I had no idea how to use the interview. He wrote back that he understood.

Sometime after that, I saw Rolf in one of the hospitals where I was visiting another man. After that I saw Rolf and we talked for hours. He had become aware of what he had done to himself, how extremely self destructive it was and I saw an opportunity for us to talk again and he agreed. We set up several meetings, but he cancelled or did not show up and I lost contact with him.

I had by this time changed my own life pretty dramatically. I was working full time in a Museum Library, I was taking care of my son, was working on several books, and keeping in touch with the people I had met in San Francisco.

One day I was visiting an art gallery and a friend of mine said that Rolf was there, but I could not see him. She had to point him out to me, and I just stood there… looking at him.
I had heard that Rolf had started psychoanalysis. He was always good looking, but in front of me stood one of the most beautiful men I had ever seen. He had lost a lot of weight, his beard was gone, and I just couldn´t believe it was him. There he was, an extremely good looking, long time, survivor.

But, things were to happen. One day we spoke briefly on the phone, and Rolf told me he had been diagnosed with Pancreatic cancer, and had one to three months to live. I really hoped there would be time to talk, but again, I lost contact with him.
One day I saw his death notice in the paper. I just stared at it, I couldn´t take it in, but there could only be one Rolf Veidahl.

Rolf had not died, as the doctors had predicted, it seems like the antiretrovirals had an effect on the cancer, so he lived until 2013 and even celebrated his 60th birthday with his friends. Rolf was at that time, rather weak and lost one ability after the other.

Rolf´s friends invited him to Mallorca. His best friend and husband, Niklas, told me that they helped him out in the water – he was very thin at the time, walking with crutches. Niklas remembered Rolf looking out over the water and the landscape, taking it all in, for the last time.

Niklas told me that Rolf changed a lot during the last years. His sexuality, that had really driven him, was calmer, it didn´t eat him, as Niklas put it. The psychoanalysis had helped him alot, and one of the last things Rolf asked Niklas to do, was to call the analyst and tell him how much he had meant to Rolf.

In the end, Rolf welcomed death. He was in severe pain because of the Pancreatic cancer. He was prescribed a lot of Morphine, so he slowly, slowly moved into death with his sister and Niklas by his side.

 

The next time I write a post, it will be about how HIV/ AIDS has affected my own family.