Keith and Gery… the first couple I met.

It was a man at SHANTI, Paul Stern, who sent me to Keith and Gery.

I actually found my way to them, and they welcomed me in to their very cozy home that they shared with 3 or 4 dogs and two cats – they called them their children.

Keith, the younger man was small and thin, with punk hair and a mustache, and Gery was more heavy built, with a beard and large brown eyes. It was hard to tell that they were sick, both of them.

We sat down in their kitchen, and they offered me coffee and a coke.

I was ten minutes late and apologized, but that was no problem. They were used to it. As public spokes persons for SHANTI they had been interviewed a lot.

There had been journalists who said they would come at five, but turned up exhausted at nine, asking them what it felt like to be dying. And then they would disappear out of their lives, and Keith and Gery would never receive articles or anything.

However there had been journalists that had stayed in touch and sent articles. They specifically mentioned Wall Street Journal, that had interviewed Keith, and sent flowers on the day the article about him was published.

They really wanted to quit giving interviews, but they kept on doing it because they wanted to help others, by speaking out.

As I talked to Keith, I realized that there were no barriers! I landed straight in to his medical story, and the information just flowed from him.

  • I was in the hospital with meningitis… and I mean! They told Gery that I was not gonna make it, cause I wasn´t reponding to nothing. I was a veggie, you know.
  • Are you on AZT?
  • My case is too severe. There is too many things going on with me, and they don´t want to put AZT inside me. I tried three times to get it.

Gery added that Keith had been on Interferon therapy for about 7 months, but they had to quit because he couldn´t take it anymore. It had made him violently ill.

  • Like vomiting?
  • That´s all I did! That´s all I do, is sleep, throw up and hallucinate.

During one period he took a lot of Valium, until he almost overdosed, trying to stay doped. He was in a lot of pain.

It was Gery who gave him the injections – I think Keith was referring to the Interferon here – and after three hours Keith would get a lot of headache.

  • There were times when I´d wake up crying, or couldn´t move, because my head would be so sore. And you know I still suffer severe headaches. The headaches are back to the point where they almost make me cry a lot of times, like they used to. I get headaches every day. I wake up with headaches, and I go to bed with headaches, every day.

It was so bad that he could not talk to Gery. He couldn´t even stand being touched by him, because of the pain. And he hated being on drugs. The couple had been on IV drugs before, but had quit four years ago.

And here starts Keith´story.

Keith was 29 years old when we met. He was from Dallas, Texas, and had lived in San Francisco for 9 years.

He came out as gay when he was 17 years old.

  • In Dallas?
  • I came out pretty much in my junior years in high school, and kind of just took my life from then on, (I wondered if he knew what he said there) because my father passed away when I was sixteen.

Both his parents had been alcoholics, but Keith´s father had stopped drinking after having had a heart attack. Keith was closer to his father than to his mother, and when his father died, he just freaked out.

  • He died right in front of me… I couldn´t believe it, cause my dad had stopped drinking for four years, and never… We had the best relationship. And then one day I handed him a glass of orange juice, and his eyes rolled back in his head, and he held his chest, and that was that.

Keith had already started doing drugs at that time, amphetamines, and had been up for three days when it happened. When they were brought this father´s watch and were told he did not make it, Keith said he freaked out, and from that day on he was his own boss, and he eventually left home with two other friends.

He made his way to San Francisco, because of the gay life there, and he made a lot of money, and he was very popular.

  • I lived a pretty active life from the time I got here, until I met Gery. You know it was bars every night, IV druguse, heavy duty druguse, heroin, crystals, cocaine, Demorol – any narcotics we could find, we would do it.It was never abnormal for 20 of us to be in a room and one syringe, and we cleaned it out – what we thought was cleaning it out, we thought a little bit of clean water would take it out, and pass it on.

In the end Keith and Gery had to make a decision, either keep doing drugs and split up, or stop doing drugs and stay together. They chose the latter.

  • So we locked our self up in a room for about four days, almost killed each other. (Keith laughed a little.) But it was coming down off all the drugs. We didn´t go through any professional rehabilitation, we felt that if we want to do it bad enough, we can do it on our own, and we did. We did.

Even so, they separated for a while, but then Keith went back to Gery and all was well for about a year and a half, until Keith took ill.

  • I started just feeling bad, fatigued and everything. Then I came down with Hepatitis B from IV drug use, and just got really sick.

Keith described a lot of symptoms he had that would today be associated with HIV/AIDS, but at the time no one knew what was going on. The term ARC was used then; AIDS-related complex.

  • And they were just: God! What is going on! What is wrong with you? So they removed a lymph node out of my neck, and I wouldn´t heal. Then I woke up one morning and I had all these purple spots all over me, and what had started happening was that all my blood vessels had started hemorrhaging – I had nothing clotting my blood. I was the eleventh gay man in the US to have been diagnosed with this disease called ITP (Immune Thrombocy Purpura). Anyway, so they had to remove my spleen in order for my blood to clod.
  • Was AIDS known then?
  • It was just coming out, this was in 1982, and the first case had been seen in 79 or 80, and then in 1981 they defined it as Acquired Immune Deficiency Symptom. But I was ARC for a long time, 1982-85.

Keith showed me incredibly large lymph nodes behind his ears. He had continued to be diagnosed with cancer, and went on chemotherapy for 9 months. He had a number of other problems, like shingles/Herpes Zoster. But it was lymphoma that gave him the AIDS diagnosis.

Many things happened to Keith during the chemotherapy, one of his lungs collapsed but then they took tests, and everything looked fine, so they wanted to close his case.

  • Forty eight hours later I was so sick that I didn´t know where I was at. I had Spinal Meningitis and for days I didn´t know nothing. I had 104 temperature for four days, so they called Gery to start getting everything in order, because they didn´t think I was going to make it.

Gery joined us and said that Keith did not start responding to treatment until the eleventh day.

  • So for the whole ten days they didn´t know if he would live or die. I had to go and see a shrink.
  • Gery lost 30 pounds in a matter of 8 weeks, over just the stress.

Keith couldn´t believe he had AIDS, although, as he said, he had done everything imaginable in what they considered high risk to get it, but still, he could not believe it.

The first encounter with HIV/AIDS that the couple had was with a friend who was very sick, Richard,

  • We moved a friend in. Nobody else would take care of him. The support systems were just starting to build up here in the city, and the day he told me had AIDS, was the day… He more or less died that day, he did not want to live.

Keith said they had all this will power and they tried to make him eat.

  • He had Cryptococcal meningitis, it attacks the brain immediately, and the drug they use is so bad for the system, it eats up your kidney and your liver.

Gery was the only that could touch Richard, especially since Keith had been diagnosed with ARC at the time.  As an old drug addict, Gery could handle injections.

Richard didn´t want any outside help, like a counselor, and he did not want to apply for Social Security. Keith and Gery were totally concentrating on him, and not on them selves.

But Richard was changing. He wrote to his mother that he was locked in, and starved by Keith and Gery. And they were shocked, because they did everything for him, and felt they had to prove that they had not starved him, nor locked him in, to the people that believed what Richard had said.

  • But his brain was out, wasn´t it?
  • His brain was gone, and we didn´t realize that the meningitis was eating his brain the way it was.

Richard eventually moved in with a priest he had fallen in love with, and he died three months later, blind and with Tuberculosis.

  • He didn´t even know who he was, or where he was. He was so sick!

They actually didn´t know Richard very well, but his best friends never helped.  They had offered, but none of them came when asked. Even Keith and Gery´s friends quit coming over.

  • After Richard left there was a lot of stress gone, which was good, but just the stress of me having ARC and everything.

It seemed like Keith was doing well when we met, but he could not get AZT, and it made him angry.

  • My doctor thinks I´m benefiting real well from the chemotherapy and the Interferon that I went under, and he´s real angry because they wont use it any more. The Interferon is supposed to build up your immune system, and that´s what he thinks he´s done with mine. But there´s just so many different things going on with me… that they don´t want to. It´s really hard to sit back and accept that these men on this panel at this pharmaceutical company sit there and play God and say: ”He should get AZT, and he shouldn´t!” What makes me angry, is that they don´t even know me. They don´t know what I deal with every day, or how I feel.

Gery´s health had been good until 6 months before, when the started feeling bad. And he was put on AZT. Keith was upset why he didn´t get it as well.  Gery called from another room: ”So was I!”

  • I´m sorry.
  • Thank´s.

I was wondering about work.  Keith had been working until August 1986.

  • I worked a couple of months under chemotherapy, but the chemotherapy got SO bad that I couldn´t function. I would be up all night throwing up, and I tried to get up and go to work the next morning, and it just… when it got to the point where I couldn´t run a copy machine, I thought… (Keith laughed a little.)

Going to work was very important to Keith, because for so long he had not worked – he´d been up all night doing drugs – so this stable part of his life, getting up every morning and go to work was important. But he lost it, and he now had 580 dollars a month to live on.

  • If I didn´t have my lover, I would have to go in to a residence program, I would have to go to a food bank, I´d have to go to a clothing deposit. Gery makes good money, and he makes sure that we always got food, and he takes me out…

Keith had worked with a law firm, with ”a little bit of everything”. He never got a specific education, but he went to a school and got himself a General Education Diploma, and then he was on his way to San Francisco.

I wondered how he supported him self while on drugs, and he said he was afraid I was going to ask about that, and I said he didn´t have to answer that, but he said it was ok.

  • I was a… I hustled, I worked the streets for about two and half years.
  • Drugs and sex, that´s very common.
  • Oh yeah, definitely.

Keith talked about a special drug that they were hooked on, one that makes you very sexual.

  • No matter what is going on in your life, the drugs make you very promiscuous. Especially the drug that we were doing, I mean that makes you wanna go out all night long and have sex with anything on two legs. That´s how powerful that drug was.

But a lot was changed because of HIV/AIDS.

  • Five years ago you could walk down Castro Street at 5 am, and there would be a lot of men looking for other men, but now you could walk down Castro at 8 pm and it is dead.

There used to be so many bathhouses in the city. They are all closed. They closed the last one about a year ago, and it was because they were practicing unsafe sex there, you know.

But the drugs do pacify a lot of times, when you´re a homosexual, and then, you know, so many kid´s parents were alcoholics and stuff like that.

Keith said that he never turned to alcohol because he turned to drugs.

  • There was nothing better to me than staying up for five och six days at the time without any sleep, and I thought: This is Heaven. This is it!

I wondered if he thought drugs helped people maybe coming from a religious background, to block that out.

  • I think it helps you open up. You can be more forward or more aggressive with people a lot of times, when you are on drugs and stuff. There is an awfully high rate of alcoholism and drug abuse in the gay community, but you got to think about this – we have no children, we pretty much support ourselves individually, a lot of gay´s make a lot of good money, you know. It was just something to do (and here I think Keith referred to pre-hiv-times), and there wasn´t a lot of things going on with diseases and stuff that were affecting the community.
  • Do you think you would have done the same, would have had the same sexual activity if you had not been on drugs?
  • I would probably have been very promiscuous anyway, cause I was experimenting, and for a long time dated girls during the day, and went with guys at night.

For a while Keith and his sister would date the same guy. When she dumped someone, Keith would pick him up. I wondered if she had been tested, but no, she was heterosexual, she didn´t think HIV/AIDS had anything to with her. Keith had once sent her information about HIV and condoms, but was really told off by their mother: He should never do that again! Did she rather see her daughter DIE? wondered Keith.

Keith´s mother was an alcoholic, and had come to them on a terrible visit, but the second time she came, she was OK, and also informed about HIV/AIDS, and very supportive.

  • We were like just in shock!

She didn´t think she could handle it if Keith got sick, but if Gery was ill, she would come and take care of him. Gery´s family did not speak to him, because he was gay, but Keith´s mother loved him. Had adopted him, said Keith.

  • She means more to him than his own mother.

I was wondering how people reacted when AIDS came.

  • Did people believe it, that it was actually happening, that it was dangerous?
  • No, we didn´t think it was that dangerous. We thought some people were just having bad luck, and that they had just worn themselves down so much that they had no immune system. We made up a lot of excuses.

When Keith and Gery took care of Richard they had visited the AIDS Ward 5 B at San Francisco General Hospital.

  • Well, four years ago, when we went there it was just like… There were so many young people dying and on respirators, and we wanted to collapse because it was… It tore our hearts out of our chests, it just grabbed a hold of  us, and we saw all these young kids that couldn´t breath… being shunned from families. And I just thought: My God. This is serious. This is really serious. 

Keith talked about how he tried to talk to people about Safe sex, about how to protect one self and the other person.

Then he suddenly started talking about what had happened when he and Gery decided to change their lives, and stop doing drugs. They ran a small hotel in the Tenderloin, and prostitutes would bring in their customers, sometimes 10-15 per night, and they paid 10 dollars for each customer, or trick.

  • We were making bucks! – and they always used condoms, always used condoms.

Keith and Gery were still using while they had the hotel, and they had just been shooting up when a man was murdered by one of the women´s pimps. They tried to save him, but the towels Keith used were just soaked in blood – he had been slashed 21 times and died the next day. While this was going on, Keith said it was unreal.

  • I was just like… This is not happening! This is NOT happening! I mean these are things you read about, these are things you see in the movies, you know, and it was right under our nose, you know.

Something else happened. Gery had told Keith that a man would come in with a pistol, a 38. Keith was not to touch it but to hold out a towel for him to put it in, and he did that and Keith put it in under the counter. Two hours later that man was shot in the face in a bar next door.

When all that had happened they felt they had to change.

  • Right there we said, if we didn´t stop, this was gonna happen to us. We were dealing with whores, we were dealing with pimps, we were dealing with guns.

They found an apartment, still in Tenderloin, but it took some turns before they moved together, and they had been together since then. It was not easy with all that was going on in their lives, but the most important thing was to be together. When I asked how it was possible for them to stay together in these surroundings, they both answered love.

  • A real strong love, said Gery.

They did get high at times, but it was nothing but trouble, said Keith. He described what happened to them.

  • When we would get high, Gery and I were completely incomplete. Everything was in the opposite. I mean, I wanted to go out, as soon as I did a hit, a go, all I wanted to do was to have sex.  Gery was content in the hotel. Like when we stayed in our room, Gery would be at one end of the room, and I would be at the other, with our backs turned at each other. We had nothing in common when we´d get high, and that just lead to trouble. But it´s gotten much better, we smoke our pot, that´s the only thing we do.

A lot of people consider it a drug, and it is a drug, but considering what we used to… You know I feel have the… I love to smoke marijuana, and that´s just one of my rights that I exercise. People say it it tears your immune system down. What immune system?! I don´t have an immune system. What the hell are you talking about!

Gery added that if they did not smoke marijuana they would probably never eat, because they had both lost their appetite.

So what did it feel like, to be sick, now that they had finished doing drugs?

Keith : I look back at the things that we´ve done that were real stupid, but they were really justifiable at the time. There´s nothing I can do about the past.

Gery: We never sat down and try to put the blame… on why we got the disease. It could have been the IV drug use, it could have been just the wrong person we went to bed with… We´re really happy about our lives now, other than the fact that we are both sick. As far as saying, you know… we went through all this, that shit, only to end up sick – we don´t do that.

Gery looked away on one of the dogs when he said that. But Keith didn´t agree with him.

Keith: I mean we DID sit back and say; Well, it´s not fair. Look we stopped doing drugs 3-4 years ago, at the time when all this started to happen, and look where it has gotten us!

Gery: Nowhere! But that´s just something I think you deal with, you do. We don´t deal with what we have done in our lives.

Keith: We had a good time when we were high and did drugs. That´s over with now. Gery and I are just about as married as any other heterosexual couple could be married. Heterosexual, homosexual, look around you.

Keith gestured towards their home.

Keith: I mean, it is so typical, everything we got, for a married couple, you know.

Gery: And we don´t drink, we don´t go to bars.

Pia: You don´t date outside of the marriage?

Both: No no no!

Gery; It´s come home every night, eat supper and watch TV, and take care of the children.

Here the couple talked about Gery´s SHANTI volunteer, Sarah, about all the good things she had done.

Keith: She´s been with Gery for two years, which is real unusual, cause the burn-out-rate is so high.

Keith was on his third. One had gone off to school, the second one was a lesbian woman, that he had totally opened up to – Emotional support volunteers are mainly there to listen – but she never came back, and he was really disappointed.

  • And I just thought: That´s it! I´ll never open my self up to anyone again. I don´t need anybody´s help. I don´t need SHANTI.

Keith said he really hated SHANTI at the time, although he knew it was not SHANTI´s fault, but because the Emotional support counselors/volunteers were there to listen, not to judge.

  • They are so non-judgemental, which is so important, because you don´t have to be afraid of what you can say, or what you can do, and tell them.

Here we were interrupted by Sarah who came to visit.

We all said hello, and she went with Keith to the kitchen, while Gery and I went in to speak in another room.

Here starts Gery´s story.

Gery was 37 years old at the time.

He was originally from Iowa, but had moved to Houston, before he came to San Francisco.

He used to be a bartender, but was now an accountant.

  • I work for the Opera.
  • That´s nice.
  • Yeah, it is, it´s real interesting.

When we spoke he had been diagnosed as having ARC, and been put on AZT.

  • At first it was just a weight loss, and then I started getting the night sweats and fatigue, then I got trush, a bad case of trush.

There were also problems with his blood and the doctor decided he would try to get Gery on the AZT-program.

  • I´ve been on AZT almost a month now.
  • What does it do to you?
  • Nothing yet, except for nausea all the time. But it takes a long time for it´s effects to begin. AZT is supposed to suppress the AIDS-virus from doing any more harm then it has already done.

Gery´s father had died in January that year, and he didn´t know Gery was sick, but his mother knew but had not responded at all.

  • But HIS mother is wonderful! She´s kind of adopted me, I´m also her son. So when ever she calls, we talk too.

Gery´s contact with his mother was not at all like that. When he told her she was sick, she asked him to send some information, and so he did, but he had not heard from her since.

She was also supposed to see his sister who worked in San Francisco at the time, and he asked if they could meet for lunch or something, since she would be in town for a week, but he never heard from her. He did not understand why she acted that way.

  • Is that painful for you?
  • … It causes a lot of anger. I guess I am angry because she is that kind of person, that she can´t accept it and be loving, cause I´ve always assumed that a mother accepts anything. And if it were cancer, I´m sure it would be different for her, or if it was Tuberculosis or something that I was dying from. If I´d been in a car accident it would be different for her, but… she just can´t accept it, and I don´t know why. I have a lot of anger about it, but I just try not to think about that much, that´s all.

As mentioned before, Gery had a SHANTI-counselor, and I wondered what it was like for him.

  • It´s wonderful… I started seeing Sarah two years ago, when we were taking care of Richard here in the house. She saw me through all that anger we had over that.

After the Richard-experience Gery only wanted to close him self to anything that had to do with AIDS.

  • Didn´t want to hear anymore about it, I didn´t want to help anybody, I just didn´t. That was it!
  • Because of the way he treated you?
  • Because of the bad experience we had – him telling people that we were starving him and freezing him to death. It was just real bitter.

Sarah also helped him when Keith was diagnosed, in what Gery called a nightmare; fighting with doctor´s, illnesses, hospitalizations and his own fears… of being able to deal with AIDS in the future.

  • Without Sarah there, I don´t know if I´d be here right now. There was a time when I was going through some real suicidal tendencies, right when my father died and Keith was real sick, and I just couldn´t understand why I had to keep giving up things, knowing that in the end it was just going to be for nothing.

Gery was going to lose what was most important to him, and that was Keith, so why go through all this torment.

But Sarah helped him, through anger and depression and periods of grief. She came to the hospital every day, and she would bring them little” care packages”, as Gery called them, with food.

Gery could talk to her about things he could not share with Keith, it could be guilt; like why Keith and not him, and fear for the future.

  • I had a fear of being left behind, and if Keith´s gonna die, I wanna die too. Why do I want to stay here?

Gery felt he could not talk with Keith about that, he had to be strong for him.

  • So I use Sarah for all my weaknesses, (he laughed a little) and my tears, my anger and rage. And… it made an immense difference.

Gery talked about life being a roller coaster, and that the highs and lows were really high when it came to AIDS – that you never knew, from one minute to the next, what was going to happen. A lot was going on with Keith, he had recently seen a neurologist because he was shaking constantly, and he was disoriented and forgetful, and the doctor said he had anxiety attacks, which was sort of a relief, because they could cope with that. But now Keith´s lymph nodes were swelling, and was that dangerous? He could share the thoughts with Sarah.

Everything seemed to be in remission because of the Interferon-treatment, and he doctor´s thought Keith would be OK for the next three years because of the Interferon. But they wanted him to go back on chemo therapy, but he refused

  • What does that mean, when he refuses?
  • It mean that… he´d rather die than… to have to go back through that suffering.
  • Does that mean less than the three years?
  • No, it probably doesn´t, unless… Who knows? They don´t know. Everything is a guessing game. He´ll probably be… somewhat healthy for the next three years.

Gery said that Keith had been ”a little tower if strength through the whole thing”.

  • I don´t think I could have fought as hard as he´s fought, if I get sick, which I hope I don´t.

At the Opera, and they knew the situation, and they were very supportive. Several employees had died of AIDS, and they had had seminars, ”AIDS in the workplace- seminars.”

We talked about money, about medical bills. They both had insurances through their workplaces, but it did not cover everything.

  • You are very lucky that you have one another.
  • Yes we are very happy with each other, and that we have each other.

I wondered if they had discussed what would happen if one of them would die. And they had, it was everything from funeral arrangements to who would take care of the animals. The only thing they had not done yet was writing their wills, which they would do very soon.

  • Yeah, we have discussed in such depths and finality that we don´t think about dying anymore. We concentrate on living now, and try to do things that we enjoy doing.

Doctor Elisabeth Kübler-Ross talked about 5 stages of grief:  Denial, Anger, Bargaining, Depression, Acceptance, and I wondered where they were at.

  • Keith´s gone through the classic rounds, you know; denial, anger, the whole thing. I don´t know, I think I´m still in denial.

Gery did not only have HIV, he also had Pulmonary Fibrosis. Some of the dope he had been shooting up had been mixed with Talcum powder, and it ended up in his lungs.

  • The Talcum powder crystalizes, and over the years it is constantly lacerating the walls of my lungs, and it heals up with scar tissue. So my lungs are slowly filling up with scar tissue.

The doctor´s had said he would have to have an oxygen tank in a few years, in order to breath, because the capacity of his lungs would be so small that he could not do it himself.

  • So you know, (he laughed), one or the other is gonna get me. It´s kind of a game: Let´s see which!

Gery was angry at what the disease did to people, and what it did to Keith. He had seen him and other´s suffer,

  • Have you lost a lot of friends?
  • Yeah, we have lost a lot of friends, a lot of acquaintances, a lot of people that we know through other people… Yeah, it has really taken a toll on this community, and it is not slowing down at all. Not at all. 119 diagnosed cases last month, you know.

For a while Gery went to a SHANTI support group, and found it very beneficial. But after 6 months, he started to feel the effects of the virus, and it became harder and harder to go to the group meetings. He rather stayed at home.

  • Did it make you more, painfully aware of your sickness.
  • It´s real funny, because there could be nights when I´d walk out of the group meeting, and just go: ”I can´t take it anymore, I don´t want to hear another word about it!” But there were other nights when it would be just so fulfilling, and so relieving to realize that you weren´t the only one feeling these feelings. And this anger, this rage, that it was everywhere, that it kind of made you feel better about it. ” Oh well, I guess I am reacting the same way everybody else is.” So you didn´t feel so isolated, so it just depended…

But there were times when Gery didn´t want to hear about it, nor read about it, he just wanted to escape from it.

  • But you can´t, you know. There´s no escaping it. We could move to to the furthest spot, the most isolated spot in the world, and we ´d still have it, right there with us. Cause we´ve got it, we´re living it. There is no escaping it for us.

When Keith and Gery took the test, they didn´t think they were in danger, they denied the fact that they could have been exposed. They had cleaned up their act, and they thought they had caught them selves in time.

  • But little did we know, that the incubation period could be 8 years… Who could have guessed.

Keith and Gery had had a lot of friends, but some they had weeded out, as they found them to be Fair Weather-friends. They now had about 12 friends, that would be there for them, ”at any given time”, as Gery said, and help them, if Keith got sick, or it was something with the cats and dogs.

  • We have a lot of really good friends that are very supportive of us… I consider that very lucky, that we have that.

I asked again about Gery´s mother. He really would have liked to see her when she was in San Francisco. Didn´t she understand that they had to talk? Couldn´t he make her understand? But Gery did not think she understood.

  • That´s what I asked her, cause I said, ”You may not get a chance to spend anymore afternoons with me. THIS may be our last chance to sit down and share something with each other…” But I guess that´s too hard for her to face.

Gery felt very angry about it, and he wanted to confront her, but he had just resigned him self to the fact that she had so many problems with him being gay, and that he was sick, that she would not be able to overcome them,

  • Nothing I can say will make her change her mind. So, that´s the way it is, and that´s the way it´s gonna be. You know, I imagine she´ll have a lot of guilt once I´m gone, because she didn´t respond to me, but that´s something she´s gonna have to live with, not me.

So what were their plans now?

  • Just to live everyday to its fullest, and get as much happiness out of it as we can, that´s our only plan… That´s our only plan. Each day is important, just to be happy.
  • Has your life become more concentrated since this happened to you?
  • Yeah, we no longer do things for people that we don´t feel we have to. We don´t waste our times on things we don´t enjoy, that we don´t both fully enjoy.

They had done a lot of things to make their daily life much more easy to bear, and they concentrated on the quality of their lives much more now, than they had done before.

Gery wanted to continue work full time, as long as he could, but there were times when he was so tired when he woke up, that he could easily have stayed in bed, but he did not want to get to that point, so that motivated him, and they needed the money. Keith was not working but was taking care of their home, and Gery said it worked out great.

  • Yeah, Keith is at home, and he´s become a very good house keeper, very good cook. I love having him at home.

Keith came in, and I wondered what he would say to someone that had AIDS in Sweden He immediately started talking about setting up support services, because it would be so important for People with AIDS, to have someone to talk to, like a volunteer, someone non-judgemental who would just listen. It could save them, he said, because they are so shunned.

  • If one person can give a person with AIDS an hour, two, three hours a week of their time, they´ll realize them selves how important that is. That´s why I think so many people here are living with the disease, because of the support we have.

A lot of people with HIV/AIDS moved to San Francisco because of the support services, they had nowhere else to go. It could save them, Keith said, because they were so shunned.

  • Two or three hours a week is all that is required by most people.
  • In caring?
  • In caring, just showing a little bit of caring and hope and love. Emotional support is very important. I think that´s the first program that people should focus in on, that have no programs, because that´s what they need.  A lot of families will turn you away, and when your family turns you away… A lot of times there´s nothing left. But when that person comes in to your life for you to talk to, they can be the most important thing in your life. So support, I think, is most important.

Keith then told me about anxiety attacks he got, things that he thought he had suppressed, combined with all the mostly negative information out there. He had a counselor that he spoke to every week and that helped him a lot, because it just overwhelmed him.

  • That´s my way of cleansing my self, to tell her what is bothering me, or what I see out there that is hurting me.

Out of everything that was going on, I wondered what was most scary to him.

  • Is it your disease, or your death, maybe…?
  • My worst fear is being left alone…

Here Keith became very moved.

  • It scares me to death, and I… sometimes have a real strong sense of that I may lose him first, I mean… Cause he´s everything to me, everything, and…  I´ve had dreams, lots of dreams that I never tell him about… You know, I see the things that he´s going through now, that I went through four years ago, with ARC, and all the side effects from medicines and stuff. I´ve just seen too many people like him, as strong as he, you know… go, and just: That´s it!

But my worst fear is being left alone. He supports me a lot, emotionally and physically, every way, but losing him, is my worst fear.

  • What would you do?
  • I don´t know what I´d do, I really don´t.
  • His worst fear is losing you.
  • Really?

Keith looked really surprised and laughed a little.

Keith had planned everything that had to do with his death, he was to be cremated and he wanted to talk at the end, at the Memorial. He also had cassette tapes ready to be sent out, and some letters.

  • I am a member of the Hemlock Society.
  • What´s that?
  • They believe in self deliverance, euthanasia, suicide, and I just don´t want to ever be put on any machines, and when I feel there´s nothing else that can be done, that´s when I will… do what I have to do, in order to pass on, you know..

Keith again talked about his fear of loosing Gery. He had seen so many, as strong as Gery, suddenly get sick and die.

  • And I´ve seen a lot of people that are real weak, like I am, go through so much and hold on, and… I couldn´t imagine… being with anyone else. I mean… He´s really good, physically, mentally, sexually. We have… it´s kind of a healing process I think for both of us when we feel overwhelmed… with all the bad news, and there´s a lot of times when we just hold each other, you know, and cry together.
  • It is a unique situation. What you have together is rare.
  • It is very rare, we don´t hardly know anyone… that has stayed together and gone through what we´ve gone through, so our relationship is very valuable.

I asked a little about his religious background, and he was brought up in a Catholic family, but not practicing Catholics.

Keith had tried a little bit of everything when it came to religion.

  • I chanted for a while. I got in to Buddhism for a while, and I got tired of them telling me that if you chanted 3 – 4 hours a day you´d get rid of AIDS.

I, Pia-Kristina, had met a friend in New York  who was really involved with chanting and helping other´s, to the point where she lost her own self.

  • I used to have ten-twelve people here sometimes at night.

Keith showed how they all chanted in front of his Gohanza, while Gery was in the next room and almost ”died”, while it that was going on with incense and all.

Keith was told to chant morning and night, and said he was on ”such a guilt trip” when he wouldn´t do it at six o´clock in the morning, before he went to work.

  • But then, after I got to the hospital it was ok to chant once a day. I thought: ”Leave me alone.” I didn´t believe in this anymore.
  • You still have your Gohanza?
  • Yeah, I still have my Gohanza and scroll. (He whispered: It´s in the closet!) I tried a few things. I believe in crystals, healing crystals, like I carry crystals around with me, and that´s enough for me.
  • And you believe in Gery.
  • Oh!

As we left the room Keith thanked me for making him feel ”so comfortable”. He told me that most of the people that came to interview them were very demanding, they wanted tears and close-ups on grief, so that both Keith and Gery felt tired and used afterwards. So what he said felt good.

And then I got to meet Sarah Finnegan, Gery´s counselor.

  • He was my first client. We were matched together in July of – 85. I met Keith the second or third time Gery and I were together, and right away there was just a real… We had just the right chemistry the three of us.

Ordinarily a volunteer spend a few hours with the client each week, but this relationship turned in to something else, much more personal. Sarah was allowed to talk to me about Gery and Keith.

  • We spend a lot of time together, not just SHANTI-counselor time, but social time. We like to sit around and eat, watch television, go for walks. They come over for dinner, they know my children, and we´re all family together. And so … we´ve gotten to know each other pretty well. It´s a pretty intimate relationship, that Gery and I have.
  • He said some very good things about it.
  • It´s a very close relationship, sometimes it´s a bit complicated because  there´s the work I do as SHANTI-counselor, and I try to be very clear that I wanna be there for him in an unconditional way, in an un-judgemental way, and just… be there as a witness.  And then there is also the part of me that is his friend, that kids around with him, and we joke and laugh and tease each other, and sometimes I have to remember that I am his counselor, when I am with him, and other times I´m just his friend.

We talked some more about Gery, what it would be like to lose him. And she said that she did not want to think about it. It was like a wall that came down for her. But she wanted what was right for him.

  • I love Gery, and I want what is right for him, and so… If he chooses to end his own life, which is something he and Keith have talked about… I kind of feel… I went through this once with someone, and it was very painful, but that´s what that person chose, and that´s what that person needed to do. Whatever they do, however it ends…

She would not have had Gery and Keith in her life, had she not volunteered, and she talked about their relationship as a treasure. She would grieve, that they could not be together anymore.

  • But for Gery I won´t grieve, because he will be in a place that will feel good for him. I think we talked about it – for Gery death is a release. It´s a way of going on, it´s a way of going beyond what´s here…

Sarah tried to focus on what was going on that day for Gery, and whatever it was that was real for him.

  • He has this tremendous sadness in his eyes.
  • He is in a lot of pain, he has had this enormous pain in his life, but you see the other side of it is that he loves someone, and he is loved by someone, and when you have that in your life… I mean, I think that for him, that´s just real important, and real special to be able to love someone completely, and know that the other person loves you back….It´s kind of one of those things that make life complete. And we talked about that, and I think that there are also some great pleasures for him; taking care of the plants and loving the dogs, have their babies, and we have dinner together and we´re silly, I mean, that´s life!

Sarah talked about the ”SHANTI-experience”, that it is really special, and she referred to a man who had talked about it being a privilige, and that was how she looked upon it too.

  • I mean, I do feel that you couldn´t pay me enough money to do this work, I mean no matter how much you paid me, it would seem like it was a privilege to do it, and so to do it for free, and to be able to kind of do it from the heart.

There was suddenly a beep, and Sarah called out to Gery – It was time for him to take his AZT.

I was late for my next interview with Irene Smith, so we said goodbye, and Sarah drove me there.

I asked how come she had gotten involved with SHANTI, and it had started while she was going through a long grieving process. She told me I could interview her, and she would ask her other client, Larry, if I could talk to him.

This is the end of the Keith, Gery and Sarah-part, for now. We stayed in touch and I will return to them.

We met again in 1988, and there were letters and  mails exchanged.

 

 

 

 

 

 

 

 

 

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 at Hospice of San Francisco, as a Massage therapist.

Her story was so interesting that I sent a letter to the SFGH, 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.

My mother had died suddenly in June that year. I had before that written to Dr Elisabeth Kübler-Ross, just trying to get in touch with her, and now I wrote again ”Furthermore, my mother just died”, and told her about my plans to go to San Francisco, to visit SHANTI and see Irene Smith. She never received my first letter, but answered to the second:

”All I know is that your mother died suddenly and that you are welcome and have made the arrangements to see Irene Smith and the SHANTI people in San Francisco and those were probably the most important news anyway.” (-)
”My SHANTI friends, especially my best friend, Irene, will take good care of you and will show you what you need to see.
I wish you a good journey and make sure that when you are with Irene that you give me  call. She has my number.
My love and blessings,
Elisabeth.”

I met Irene Smith 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 moved inside.

She was dressed in white, and everything around her was white. Irene was very beautiful, and 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 is 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 use 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 also 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.

I eventually made contact with the family, and was told that the parents did not have money for the burial, so it was given to them by Social services or something similar – and here is what drugs do to people  – the parents used the money to drugs.

In the end, a woman who had lost her son in an accident, offered the family space for the children in that grave.

 

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. (I think it must have been Ahna Stern (1932 – 2015.)

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.