Robert Pitman, a Practical Support Volunteer

Robert ”Bob” Pitman, even Bud.

We met through SHANTI, and he was so easy to talk to.

On the short way from the Names Project, where he picked me up, to the restaurant he told me about friends and about San Francisco, about ”circling the wagons”, suicide, and … things I had to return to later in the interview.

Robert was 46 years old, and he came from Cleveland, Ohio.                              He was a child counselor, a playwright and a director. He was a Practical Support Volunteer from SHANTI, and he also volunteered for Project Open Hand, delivering meals to people with AIDS.                                                              He had lived in New York, and when we met in 1987 he had lived in San Francisco for seven years, with his partner, Bob.

I wondered if he had come out at work.

  • Pretty much. In fact the only people I’m not completely totally frank with, is my parents. That’s… and I´m not deceptive, I just don’t force issues. They have stayed in my house, and my lover and I have slept in our bed, and… we have a portrait of ourselves, which makes our relationship very clear, that we don’t take down when my parents come to visit, so there’s no way that my parents can’t know, but… it’s never been articulated.

When it came to AIDS, he had a plan.

  • I’m looking forward to visit in October, after the National demonstration on Washington, I’m gonna stop in Cleveland where my parents live on the way home. And I’m sure the subject will come up, and I’m determined now to be as frank with them as it is possible to be, without being hurtful.

I wondered how Robert came in to AIDS work. And that lead us straight in to his work at the theatre. He was engaged in Theatre Rhinoceros, a local theatre company in San Francisco that do plays with gay, political or social content. (Still active. ”America’s premier and longest-running queer theatre” it says.)

  • During 8 months in 1983, we lost as many members as months went by. It was every other week or so, someone else was dying, someone else was going back in to the hospital, someone else was coming down with something, and… It culminated when our founder and artistic director was in the middle of auditioning the west coast premiere of Bent, choosing actors, and he collapsed, and it was PCP, and… it was… That was like the… the climaxed trauma of that whole winter and spring. And, so when it was all over and we got the show opened, he died…

I was emotionally, just… I don’t know what you say, a basket case. I did a lot of weeping, whether I wanted to or whether it was convenient in my life or not. It was just… I had no control over my grief. And… I … went to SHANTI, feeling like, well, I gotta try and … help out in some way.

Robert said that he found, ”the strange thing about this work”, that it was not about saving the situation, but by doing what you can.

  • By doing what you can, you lose that feeling of powerlessness, that… feeds on grief… and I began to… be able to control my grief – not that I didn’t grieve, but… I choose when to do the grieving, so that it fit the rest of my life, so that I could have a life too. You can’t just break into tears, (he laughed a little) any time you feel like it for very long, and get very far in  this society, so that’s what I’ve gotten from this… this… ability to manage and harvest my grief.

Robert talked about the incredible people he had met through SHANTI; People with AIDS, and people who help People with AIDS.

  • And… seen a lot of examples of… how to go. I mean, I’ve seen some incredibly noble people… and some who were a little more human… but… I learned a little something from all of them, in terms of this process.            You see, I should tell you that, ah… I fully expect to die of AIDS. I don’t have AIDS at the present time, but I have enough other conditions to be declared ARC, (AIDS- related complex), although we haven’t officially done that…

Robert told me he had, or had had a number of illnesses over the last year, which made it pretty clear to him that his immune system was breaking down. There was talk about ARC, that 50% would go on to have an AIDS- diagnosis, but Robert thought it was 100%, but as he said, it was his personal opinion. He was not very optimistic about a solution in his time.

  • So my whole concentration through SHANTI, is to concentrate on right now. Today. Tomorrow.

I´m a practical support volunteer. That means that I do the dishes, and carry out the garbage, wash clothes and cut the grass, and… give them a bath, shave them, what ever they need. That´s practical, is not having to do with their emotional needs.

  • Why did you chose it?
  • Has to do with the kind of person I am. I need a high probability of success, when I go into something. If I was an emotional support person, in a sense when I arrived, I´d be saying: ”Hi! I´m here to make you feel better.” As a practical support person I´d say: ”Hi! I´m here to do the dishes.” I have a much higher potential for success as a practical support person, and the reality is that a lot of emotional support goes on in the practical program.

Robert mentioned a woman that was running the Practical support program, and what she said about the relationship to the client.

  • She said ”The best place for us, is a half step behind at the elbow.” And that really sums it up, just slightly behind. So that… If they are in denial, we are in denial, if they are in acceptance, we are in acceptance… It´s not our job to point out what they are experiencing, no, it´s our job to validate it, validate their right to it…

One of the things Robert had talked about before we started the interview, was the relief he had felt when he was diagnosed with the virus.

  • I was saying that after living in fear of coming down with this disease, for years, to finally have something definitive happen, even though it was negative, even though it turned out to be a sign that I´m probably going to get sicker… at least the wondering, the worrying was over. Now I have something concrete and real, something definite to deal with, and that brought with it a kind of relief, a kind of ”at last”, you know.

We went on to talk about his lover.

I wondered about him, how he was doing, and Robert said one of his lovely lines:

  • Peasant stock. Nothing´s gonna kill him.

I wondered if he was also involved with SHANTI, but the wasn´t. But they were both involved with Open Hand, that delivered hot meals and bag lunches to People with AIDS.

  • We do that together. One of us drives, and the other one carries them (the food) up to the place. We started doing this, specifically, because we were looking for something we could do together, make some kind of contribution to the situation, so that´s how we hit on the Open Hand.

Robert said he had more experience with SHANTI, than with Open Hand.

He had gone through a training at SHANTI to be a Practical Support person. It was over a weekend, and during that time some of the participants bonded ”incredibly closely”, so they asked to be in the same support group. It was a small group, six – eight.

  • You meet up every two weeks and just share what ever you´re experiencing – some time you have to get rid of some grief, some time you have some anger, some times you just have some practical problem.

Robert said that there were always more experienced people than less experienced, so they could help and guide.

  • There were times when… I could not, all I could focus on,was to just keep it together til Wednesday night, just hang in there, cause Wednesday – if you need to let it go, you can let it go, because it is a safe place.

Robert said it was a classic example of that concept, a tremendously wide group. There was a 65 year old nurse, a young man studying to become a Catholic priest.

  • Couldn´t believe it… Catholic priest in my group! (he laughed)… Just all kinds.

I wondered if they had stuck together, but as SHANTI grew, new groups had to be created, and people moved in to other groups.

  • I went to several of those,  and it´s kind of a natural organic growth kind of thing.
  • Why did you stop?
  • I did it for two and a half years, and I became sick. When I got better I realized that I was stalling in calling back to get a new client.

He postponed and postponed, and in the end he realized that he didn´t want another client, and he went to SHANTI to talk to them.

  • And SHANTI is very wise, the organisation. They make it very easy to leave, so that it is easy to come back. And they said: ”Hey, you know, you don´ t have to apologize to us. We… wondered when you were going to burn out. You know, you can´t do this for ever! God bless, and if you feel like coming back, let us know.” And that made me feel wonderful, because the truth of the matter is I was feeling a lot of guilt around it.

Robert talked about the beginning of his time as a volunteer, when he couldn´t wait to get a client.

  • Start doing something good… being able to … make a concrete difference in somebody´s life… it is the greatest high in the world.

I commented that people I have met seem to be very content with that hey are doing.

Robert talked about how one quickly learns from people that are facing death how unimportant many things are, superficial stuff.

  • Once you clean that out of your karma, you got a nice life going, you know, so that´s why people seem serene, if they do.

Talking about karma – did Robert have a religion? (He laughed.)

  • A little bit of this, a little bit of that. I was raised in a protestant church in Ohio, and… my memory of it is that the church was like the primary social institution in our lives.

I don´t believe any of the mythology around Christianity, but… I do find that I live my life by certain moral values, absolutely, absolutely consistent with what I was taught and raised as a child. So… I´ve eliminated the… theatre, and I´ve internalized the value system, and it works for me, I have no problems with it.

So, had AIDS changed his life dramatically? Robert laughed a little when I asked that question.

  • My friends have died. Ah… my activities, the way I behave, the things I do. That sort of things… When it comes to gay activities… People talk all the time about the negative things… the negative changes around the AIDS-situation… I think it is more important to talk about the positive things, and the things that are positive, are very very positive.

Prior to this crisis we existed, or were organized – let me put it this way – we, as a group around our pocketbooks and our groins. Our social institutions basically reflected that.

Now we have institutions like SHANTI and the AIDS-Foundation and Emergency AIDS Relief, and Open Hand and this and that and the next thing… on the other side of the crisis.

If we survive it as a subculture, and I don´t know that we will, we will really be important. IF we survive, we will be incredibly strong, and incredibly gentle… if we survive… The question to me, I think… I see… internment.

In a previous post in my blog, about Keith and Jay, Keith feared that people with AIDS would end up in concentration camps. Having interviewed survivors from concentration camps in Poland and Germany, it was difficult to see that something similar would happen to People with AIDS, with mass murder, gas chambers and crematoriums.

But here Robert started talking about something else; the Japanese internment camps in the US during World War II. Maybe that was what Keith had in mind.

  • I think there are many parallells between where the gay community is today, and where the Japanese community was before World War II in the United States. We are both… subcultures in… intact within the greater culture, mysterious to… some degree to the greater culture, and… to large portions of the greater culture, also anathema.
  • What is that?
  • Anathema… we are despicable things, we are despised, hated. Now, in the cases of Japanese it was racial, in the case of us, it´s sexual, but it´s exactly the same dynamic. And there were special groups… that were pleading special causes against the Japanese, because the Japanese were successful.

The gay community is perceived as very successful – I can take you down and show you some of the hotels where we deliver these meals, and defy you to find a successful homosexual. But the public perception is… that we are all white, we all make 80 000 dollars a year and stuff.

My point is that, in many ways… the Japanese Americans, at the beginning of World War II, and the gay community now, are in similar positions,(hard to hear, but I think he says (ir))relevant to the rest of society, and… When the AIDS-crisis finally frightens the heterosexual community enough that they get off their butts and start dealing with it, then we, the homosexual group, are in grave danger, because when the real danger comes, that´s when the backlash comes. Gay bashings already up through the roof, I think…

Robert said that they could find themselves in some kind of internment, possibly quarantine, as he said, there were many ways. But he wondered if they would do as well among them selves, as the Japanese had done, or if they would fall apart.

  • And the key to that really is… how mature… our institutions are when we get there, because the Japanese had centuries of family, they had decades of isolation in this country in which to build up associations which they could then transfer in to the camps and things. I did a lot of reading about this.
  • Would you go freely in to a camp?
  • It would depend, it would depend of a lot of things. If I had a lover in the camp, my lover, without a doubt.
  • You would not fight it? I mean if he was not there, would you not fight it?
  • I would avoid it… at some point I probably would resign my self to it.

Robert talked about what it could be like, with medical attention, no shortage of food, a functioning society where one could live, even make theater etc.

  • I mean, we are in no way looking at… the kind of death camps the German´s meant. I think the model to examine is… The Japanese-Americans, and the foreign nationals in this country.

Robert suddenly said: Holy Cow! Look at this!

He suddenly saw someone that had been in a group as Robert; they had taken care of a man with AIDS.

I asked Robert he could tell me more about some of the people he had been a volunteer to.

  • Some that have meant something special to you.
  • They´ve all meant something to me… See, who will I talk about? I´ll talk about… two really positive experiences, one of which was not a SHANTI experience, and one… sad experience. I won´t say negative, but sad.

Robert started talking about his first client, Tony, a man from Great Britain. The man he had just met, Jim, was part of the team that had helped taking care of Tony, they were friends. Robert thought this was in 1985.

  • Tony went in to the hospital with Pneumocystis in November, got out at the end of November. Did not go back to the hospital over night again, and did not die until June.

We had a practical support volunteer, an emotional support volunteer for Tony, a practical support volunteer and an emotional support volunteer for Tony´s mom. We had volunteers from other agencies, and… for eight months we kept Tony at home, where he maintained his dignity, where he wasn´t deprived of… his own enfranchisement, his own rights, his own powers as a person.

When you are sick, whether its AIDS, or whatever it is , you lose that power, those decisions are taken away from you. You can´t eat what you wanna eat, you eat what you are told to eat and so on and so forth. Well, we avoided that with Tony, we kept him at home.

Robert said that in the midst of all they had wonderful times together, they ate Indian food, went out and ate Indonesian food.

Tony, who was Polish nobility, was an executive of the Bank of America, ”advertising type of person”.

  • Had a little home, nice little car, was… I mean… Just in the process of doing it – the American dream. And he had this house that he was renovating . But then he got Pneumocystis.                                                                                                                                                                                                                                                                 For two weeks Robert took him to the hospital every day so he could get Pentamedine.
  • He would lie and they would flush that stuff through his system for four hours. But he didn´t stay in the hospital, we brought him home.

Tony got worse, in to a period of real wasting.

  • And with that came incontinence. And for… close to a month Tony would not let me clean him up, only his mother could clean him up. And then one day… friends had arrived from Great Britain for a visit, he got excited, lost control of his bowels, and… he let me clean him up.

Now… let me back up a little bit… I used to think that if I got AIDS I´d kill my self, just right away! And then I met all these people who are having all this great life, after diagnosis, so I said, Well… that´s not the time to do it… obviously, so then I picked this… next obituary time, when I´m bedridden.

Now, Tony and I would sit in his bed for hours, laughing at Marx brothers films… so I said: Wait a minute, plenty of quality time left after that, so let´s just adjust our calendar a little bit. So then… I decided incontinence, I said I don´t wanna subject that to anybody… But on that day… I have to take a minute here, it´s a very powerful memory for me – and here Robert almost started crying – ah… on that day that he allowed me to clean him up… it was like… the greatest gift that a person could give another person, is to… be that vulnerable with them, to be that dependent… So I decided that… maybe incontinence isn´t gonna be where I check out.

It was very difficult to hear the rest of what Robert said there, but he talked about his right to check out, about personal growth and being smarter through the experience with Tony.  And he continued to talk about him, and there was ”A nice button on the Tony story.”

  • Tony was… opinionated, and… aggressive in his exercising of his estetic, his taste… and the last thing he did before he died… Some workmen arrived to repair a skylight in the kitchen, which was leaking, and he gave them very specific instructions about where they would find the ladder, and where on the roof it was ok for them to walk, and where it was not… and how it was to look when it was done – and he died.

And to me… to me that was great, because… he was in charge, ok? He wasn´t some helpless man strapped to a machine. He was in control of his life, he was making decisions about his home… Given the kind of person he was, and the life he led… no better way to go.

  • And he died there, after he had said that?
  • Within minutes of saying that, yeah. I think that´s wonderful. I think that´s a beautiful story.

Robert wanted to tell me about another person, but I wanted to hear more about Tony´s mother, Joan, first.

They had sold Tony´s house and his car, and they had had a few garage sales, and when all was done she went back home.  Tony had been cremated, and she brought his ashes to Great Britain.

Robert and Joan were still in touch, and he would help her if there were problems with bank accounts and things.

  • Is he buried here?
  • Ah… he was cremated, and she took the ashes back to Great Britain.
  • He didn´t have a lover?
  • No… Tony was a… Have you ever heard the term a-gay?
  • No.                                                                                                                                                Robert laughed a little.
  • Getting a big education here. An a-gay is a person who wears the very best clothes, goes to the very best clubs, has everything… Everything is just so! And… my experience is that people who focus heavily on those kinds of things, don´t bond very well, they don´t join well. And Tony was very much an individual very much complete into him self, as far as I could tell. Certainly in terms of his intellect, in terms of… sense of his own value. At no time did he ever question his own… validity.                                                                                                                                                                                                                                We talked about the different stages, that Elisabeth Kübler -Ross talks about, grief and  bargaining  and so on.
  • Did he accept?
  • I don´t think he ever did, no… No I don´t think he ever did. I don´t know that I´m ready to, I don´t know that it´s necessary. I don´t know that I want to.

And here Robert quoted Dylan Thomas ”Do not go gentle in to that dark night”…

  • I don´t know that it´s necessary.

The next client that Robert told me about was Lwayne. This was a man that Robert knew privately.

  • He was a small black man with perfect taste and a fierce determination to get everything – to have it all.

Lwayne had been sick for a long time, for two years, and during that time they were expecting the news, but it didn´t come. But suddenly it came, and by that time he had developed several illnesses.

  • CMV, that makes you go blind. He also had… KS in his lungs, and several other things.
  • You can get KS inwards?
  • Oh yes, oh yes, it´s not just on the skin. So… shortly after Christmas 1985, twelve of us met in his mini studio  apartment, and he was… it was clear that he was too weak to be left alone. But he… he didn´t want to go in to hospital, and so… the twelve of us, we ran the gamut from leather queens to a-gays, and everything in between, including a heterosexual couple.

And we put together a list of responsibilities, like a calendar, and we broke each day in to three periods, and then we just signed up for a shift, so… For a little of two months… Lwayne was never alone, unless he asked to be.

So that every single night there was somebody there, sleeping in a sleeping bag on the sofa usually, so that if he woke up and had to go to the bathroom, or needed something, there would be somebody there that he knew… that he trusted. And for two months, we kept it.

Here Robert almost started crying again

  • In that time… in those two months, sleeping over and waking up and making a pot of coffee for the next guy; the a-gays and the leather gays and the attitude gays and the straights, we all… we… we really fused together, we became a team, we… developed trust, we learned each others weaknesses and how to compensate for them, we just became… cohesive…                      And Lwayne… towards the end we had to carry him from his bed to the toilette. He never was very big anyway. I remember once literally carying him like you´d cary a baby, with one arm, and just sort of keeping him balanced. He was just… nothing… ah… after he died.
  • He died at home?
  • Ah… these are the success stories, to me. We were all there, not when he died actually. We went home… We were there 24 hours practically, we all decided to go home. We left the hospice worker there – a wonderful guy – and he called us the next morning to say that Lwayne was gone.  And we all came back.

They did the things that they had to do, you call the medical examiner and this and that and the next, and then after the body was gone, we just sort of looked at each other and we said: Well… lets empty this apartment, lets get this stuff taken care of, then we don´t have to come back.

They emptied the place in 20 hours, ” I mean, just gone! ”, and a week later they had a party. One of the men in the group had a house in the Berkeley Hills, so they met there and talked, and reminiscend…

  • And it was almost as if… we were decompressing as a group as the party progressed, and so we realized at the end that we would never again meet as a group. We still… some individuals still connect with other individuals, but as a group our job was over.

We all felt very very good about what we´ve done, still do, that´s how I want mine to be. I don´t want to be in a hospital. I want it to be… I don´t have to have… you know, people waiting on me hand and foot, but I´d like to have a friendly face…

Here a car drove by so the rest was drowned in sound, but for the last words about that:

  • I don´t know if there is a best way to die. (Robert laughed a little) you know… certainly there are worst ways than others, but…I was gonna tell you about Richard. Richard was my last SHANTI client. I wonder if that´s significant,    I´ll have to think about it sometime – the last one was the sad story…

They had been matched through SHANTI, and Richard had just gotten out of hospital, and Robert went to see him.

  • And… he came on to me. Really heavy. I had a little trouble with that… On the one hand, you don´t want to… there are rules against responding to that, but… he had no… no real grasp of reality, because if I had… responded to him, there´s nothing he could have done, I mean he was way too sick, but… His old persona required him to come on to me, ok… As a woman I´m sure you are familiar with hat persona. (He laughed a little, and yes I was. )

Robert said that Richard was a real two-fisted drinker, and that SHANTI had problems with his drinking. Richard had an emotional support volunteer that had reported back to SHANTI that Richard was drinking, that they had a substance abuse problem there, and they wanted to confront him about it. They asked if Robert would stand by them when they did that, and Robert said no.

  • Cause who am I to tell him he is drinking too much? He may have a week left, and… As a matter of fact he had a couple of months. (He laughed.)

The long and the short was that he told the counselor to stuff it! And he fired his emotional support counselor, but I was a hero, because I wasn´t involved in all of that, so… then anybody who wanted to have anything to do with Richard had to go through me. Suddenly I´m the chief of staff or something. Well, it was wonderful! And, he never, never failed to have something fun to say to me, some little special moment that we would have, until the last.

In the end Richard drank so much that he was unconscious most of the time, and he was put back into the hospital.

  • And then I became his only real connection with the outside world, because, despite the fact that he was a native San Franciscan with six or seven brothers and parents who lived 20 miles away, none of them ever came to visit him, or had anything to do with him, except one sister who lived hundred miles away – she came as often as she could. They had been estranged for years… the family.

He had a brother who lived a block and a half from the hospital he died in, and that brother never set foot in the hospital… To me that´s so sad, but on the other hand… it didn´t seem to bother Richard at all. He couldn´t have cared less about whether those people came to see him or not. Whether he connected with them or not, it just wasn´t a problem for Richard – I think that is wonderful, because it´d be a real problem for me.

When Richard died, Robert was not there.

  • I … I was there until an hour before he died. I was … I was so hungry (he laughed a little) and… so… I knew he wasn´t gonna make it through the night, and so I said my goodbye´s. He was nowhere near conscious, although I believe that… there´s conscious and there´s conscious, you know, I believe that he knew I was there, that I´m sure of, cause he… found and held my hand, and… I feel that I made my … peace and said my goodbyes. I don´t feel a sense of loss with him, for not having been there. I´m passed that. I don´t need to be there.

After Richard´s death, Robert and the sister cleared his home. Richard was cremated and she brought him with her.

Robert had a photo of a young Richard. He was on the cover of a gay magazine from the 50´s. Very rare. And he looked like James Dean.  He had been 19-20 at the time, a beautiful man. Robert also had a photo of him from his last years, and he reminded Robert of Rock Hudson.

Back to Robert.

I wondered what he was going to say to his parents, when he came to visit. Robert laughed.

  • I don´t know. Well, the first thing I´m gonna do is… is clarify the relationship that I have with Bob, and say o k… it needs to be said. I need to see you hear this, o k, and then from there… I´m gonna tell them about my own health status, and… that´s as far as my agenda goes.

Robert thought they might want to say something after that, but he really wanted them to understand.

  • I want… I wanna make sure that they understand the exact and specific and deep nature of the relationship that we have. I wanna make sure that they understand that… when I am too sick to make my own decisions, he will make them, not them. It´s not a rejection of them, it´s a reflection of how much more important to my daily life he has been for the last 20 years.

You know, I call em up on the phone, I go home and impersonate the kid that used to live there. I behave like what they expect me to be, not what I am. Whereas with Bob, I am exactly who I am, so he knows who I am, so he is in a much better position to know when I want the plug pulled or whatever, than they would… also… he is… the most important person in my life, not them.

I love them, you know, but if it came to some kind of choice, which I can´t imagine, I mean my parents are just not that way, but… if it came to a choice, he would be the one I would chose, no doubt about it. But it´s not gonna … that is worrying about phantoms that don´t exist.

Robert had a lawyer friend and he was going to sign a Durable Power of Attorney, and a will.

  • Not that I have anything. (He laughed. )

I asked about the ”checking out”, had he decided a date? No.

  • When it comes, it comes.
  • Maybe it´s not gonna be necessary.
  • Wouldn´t it be wonderful, (if) something came along…

Robert said he didn´t knock people who believed it would, but the said he would rather live with a ”realistic, if somewhat pessimistic point of view and be… in charge, you know, still in control of my life”.

  • I´m a very opinionated person… I have a very strong personality, that´s the gift of my father, and… just like Tony… finished his life by doing what he does, giving orders (we laughed), I wanna finish my life doing what I do, expressing opinions… you know. And I think I will.

 

Robert talked about friends he had lost contact with, for example a friend from New York. He had heard that she had won an award for a poem she had written that he was in, ”Missing friends”, and the last line in that poem is: ”once I thought I saw Bud Pitman…”

  • That was the last line… in the poem, and… never been in a poem before.
  • That´s nice…
  • And that´s because of the crisis, because it´s… I´m looking at… tying things together, and… pulling things back, and… making things whole.
  • Is that ”unfinished business”?
  • Kind of, yeah. Kind of… and that´s a good thing. We were talking before about the good things that comes from this crisis. That´s a good thing.

Another good thing is that… as a group of people, we are loving and gentle with each other, when we never were before… We´re capable, we´re capable of great caring, great… great pride, great strength.

Robert said that he felt more safe with gay men, than in a group of straight people, safer than he had ever felt in a group of gay men before.

  • And it´s because we have this incredible enemy, so we don´t have time to be bitchy with each other, we don´t have have time to… play those games with each other. And that´s why the people that you´ve spoken to… experience no fear of expressing their status, because… they know they are safe.

Before the interview started Robert talked about Circle the Wagons, and I asked him to explain what he meant.

  • When the Western States of the US were being settled, large groups of people traveled in covered wagons pulled by oxen, with everything they owned in the wagons. And sometimes, as they were traveling alone, they were attacked by Indians, and… The defensive strategy was to pull at the wagons around in a big circle to create a safe haven inside for the families, and then the wagons could be used like a barricade from which to fight with the Indians and fight them off. And so that´s the origin of the expression, the Americanism ”Circle the Wagons”.

And that´s what we´re doing in San Francisco today; we have the wagons circled.

But he was worried about straight people, who he said didn´t get it, that AIDS could affect them too. Who didn´t think they needed condoms. It scared him.

  • And they´re gonna start dying, if they don´t start doing it, and I don´t know how to get that out.

I wanted to know more about Tony´s mother, Joan, that had come over from England to take care of him. She had been around 78 years old then.

  • How did she take it?
  • Well, she was… very close to a nervous breakdown at the end, because of the work she was doing, and she was working around the clock – she did three loads of laundry a day… and she was pretty shaky. As soon as … as soon as Tony died she came together. She was shaky still, for a day or two, but then it was like – got down to business. Once the pressure of ”when is he going to die”… was over, she got better.

Robert and Joan started taking care of things, and then it was over. There was no funeral.                                                                                                                      –

  • Oh no. Tony´s mother had no use for the church, no use for the church. She is vegetarian, I told you, a free thinker!

Robert himself had had bad experiences with funerals and memorials, and he told me he had walked out of several, as what was going on was ”polluting his memory”.

It was often the things that were said during the services that he couldn´t stand, he mentioned one friend who he said was a ”gentle, loving, wonderful guy”, and when the Baptist preacher got up and talked about guilt and sin and redemption, he got up after ten minutes and left, and he found out the day after that half a dozen had followed his example and left.

  • So now I don´t go to em, unless I am pretty sure and know what I´m getting in to. (He laughed.)
  • What would you do?
  • For my service? I don´t know. I´ve started to think about it since I had these bad check ups. Ah… whatever it is, it isn´t gonna be about religion… and whatever it is, it will have a lot of music

He wanted singers and musicians to get together and play, and there were some poetry, that was important to him.

  • Mostly, what I´d like to do is have everybody just get together, get stoned, have a good time…

Robert had heard through the grapevine that his mother had bought a plot for him in Ohio, but he had written to her that she should really try to sell it, because he had tried for so many years to get out of Ohio, and he did not want his body returned there when he had died. And he was going to be cremated.

I asked about the ceremony I had heard about, when people go out in a boat and scatter the ashes with rose petals and so on, but that had become so expensive that there had to be five parties on the boat to make it affordable, and every party would get ten minutes at the front of the boat, and then get out of the way for the next party. So… He had mixed feelings about it,he´d rather had his ashes spread from land. He had had some good times at Lake Erie in Ohio, and he thought he would have some of his ashes sent to a brother who could throw them in.

I wondered how I could sheer him up again, we could get a chocolate or something?(We laughed.)

We were one our way to Open Hand in the Trinity Episcopal Church, but we started talking again.

Robert was talking about going to the theatre when one of this shows had closed, and the set for the new show was not up yet.

  • And I go in there, and I sit and I look around, and I… think, my God, there was this entire magic world in here yesterday, and now it´s this empty room, and it´s cold and it´s… it´s uncomfortable, and yesterday it was a magic place.

The tape broke, and he picked up again:

  • We were talking about how similar the emotional bonding is, between a group of caregivers taking care of a person with AIDS, and a… theatre company, and how…                                                                                                            While you are putting together a show, or taking care of a sick person, you are intimately and intensely involved with these people… to the point that… you forget that there was a time when you were´nt. And then when the show closes, or the person dies… suddenly your… your whole reason is over. Your reason for being together is over.

And here we stopped and Robert took me to Open Hand.

Towards the end of December 1987 I received a letter from Robert. He wrote that he was OK.

”I´ve been taking an egg lipid product called AL721 since early November and I think it´s helping. I´m gaining weight for sure. I think my energy is better, although the last few days I´ve been pretty tired most of the time. ”

Robert and Bob had gone to Washington, DC to the Gay Rights demonstration in October, ”It was wonderful”, and they had also seen the NAMES projects Quilt. He found it very moving.

”The quilt was recently laid out on the floor of Moscone Convention Center here in S.F.  I went determined to look at every single panel. It took me more than three hours.”

He wished me a Happy New Year.

 

 

 

Författare: Pia-Kristina Garde

Born 1951, in Stockholm. Actress, author and libraryassistent. Retired from all, but Writing. In 1977 I published two books, one of them was a lay persons book on dying patients at a hospital in Stockholm, and at S:t Christopher´s Hospice, outside London. I have since then written one book about survivors from the concentration camps that came to Sweden in 1945, and several books about a Swedish author, Karin Boye (1900-1941).