Gary Shepard, an Emotional Support Volunteer.

Gary came highly recommended.

I had spoken to one of the volunteers at SHANTI before Gary came to see me.  He had such high regard for Gary, for how he cared for his clients and helped them, the incredible intensity of it, the volunteer said.  That man who turned out to be HIV-positive, said to me that if he ever got sick, he would want Gary to be there with him, when he died.

Gary was 48 years old when we met.He was originally from Indiana, and he came to California in 1966…

  • It was the the year of the Hippie-thing started in San Francisco, a lot of rock & rolls called it the Summer of Love… and I came from New York where I had been training and working some as an actor in the theater.

Living in California was quite different from living in New York.

  • People were smoking Marijuana and taking LSD and listening to different kinds of Rock & Roll, growing their hair long, and… all that stuff was going on, and I did that for a while. And then…

In 1968 he met the woman who became his wife, and they began living together in 1969. They got married in 1970 and have two sons.

Gary went back to school and got a degree in Broadcasting. The family moved to Illinois and there he worked with cable television. After two years they returned to California, and Gary became a freelancer, producing and directing ”mostly business communication television”, and that was what  he did when we met.

  • My wife is a nurse, and… much of my life and energies, I think, are really focused on my children and my family. I have a really nice family, a really good support system.

I first got involved in the AIDS-epidemic… when I, of course followed all the early stuff in the papers, and was always very interested, and since I really define myself as a bisexual person… I suppose that… My nightmare was that I would contract the virus, give it to my wife, we both die and abandon our children, that was my nightmare.

At around the same time a friend of Gary and his wife called – he wanted to do some volunteer work and Gary´s wife, who by then had had several AIDS patients, suggested he´d call SHANTI, and so he did.  After he had gone through the SHANTI training the friend called Gary.

  • And he said: ”This is wonderful, it has changed my life. You should do this, you´d be very good”, and it was sort of at the same time that I was feeling… a lot of fear, around AIDS, and came to the conclusion, you know, like I had two choices; I could either run away from it, or I could run toward it, and running toward it seemed… more beneficial to me… but I did it sort of a step at the time. I filled out the application, I waited for a while, wrote my essay, I did the interview, I didn´t think too far ahead, I just did it step by step.

I wondered if Gary had taken the antibody test, and he had, right after he had sent in his application to become a volunteer, and it came back negative. To be really sure, he needed to go back for another test 6 months later, but he didn´t do that.

  • I really didn´t want to know, I mean, you know… So, so I took the training and I became a volunteer, and in December it will be two years. I have been a volunteer for two years, emotional support.
  • So, how was your first client?
  • My first client… actually ended up firing me, in a way. It´s a man named Bill, who was about 55  years old. He had had the same lover for sixteen years, but had decided that they would… remain together as room mates.

The couple owned a lot of properties, and were very well off, and Gary said that they had a beautiful apartment that they had shared as lovers for a number of years and as room mates for four or five years, when he met Bill.

  • And he was interesting, cause I have never seen anyone prepare for death the way he did. It was like, he had done all the banking, he had done his taxes, taking all the insurance, putting stuff in to his friends name; he had made all of his funeral arrangements.

When I met him he was… supervising having the house painted and the garden redone, cleaning  out his closets – he wanted to be able to die, and noone would have to do anything, make one two phone calls, so he was really well organized in that respect, but not really wanting to talk a whole lot about feelings. And… I met him once, and we had a very nice conversation, and subsequently we must have talked on the phone maybe a half dozen times, and each time long conversations, thirty, fortyfive minutes, but he never wanted to, in all my attempts to make a meeting time with him, he always had some reason, ”I have to do this”, or ” I have to do that”, and… So finally we did make an appointment to meet, and when I arrived there was a note on the gate telling me he couldn´t make it, and when he was ready for me he would call.

Gary wrote him a letter, but the never heard from him again, he didn´t even know if he had died.

  • … He just didn´t want to talk… it was something he wanted to do initially, I guess, I don t know.

Gary´s second client was a man who had lost his lover, one of the first people diagnosed with AIDS in the city, and many friends and people he worked with, and he just could not stop grieving.

  • So… he became a client of mine… and… I like him a lot and we spent… about four months together, and he finally came out on the other side and felt much better, and felt there was no need to go on. I have talked to him since, and he changed jobs and has a new lover, you know, and so things sort of did fall into place for him.

Gary´s third client was a man called Dwayne. He was 33 years old, and Gary knew him for about five  months.

  • He was real central to the whole volunteer experience, and I got really close to him… When I met him, he was 32 or 33 years old, divorced, two children. A third adopted child.

He´d been in the army… He had decided that he… felt all these sort of homosexual feelings and he felt like he needed to explore those. He kind of wanted to say to his wife ”I don´t know who I am and I don´t understand this, and I need to go off somewhere and explore this”… And the minute, of course, he said gay, she freaked out, divorced him, and his family all got nasty and he became an outcast.

During a four year period everything happened to this man, separation, divorce, trying to start a new life, had some really ”rotten kinds of relationships”, said Gary,  and he was forced out of the army because he was gay, and then he got AIDS.

  • You know… he had been an abused child, I think his mother was probably an alcoholic.

Here the months and the years were a bit confused, also the diagnoses, because it was so much, but he had been diagnosed with AIDS in August, and Gary met him the following March, probably in 1986.

  • He lived in a SHANTI- Residence, he didn´t have any money, that´s where I met him… He had gone to Arizona to visit his children, and became really sick.

He had gone to a VA Hospital where he got his diagnosis, PCP, and after that he came to San Francisco to a SHANTI-place.

  • He had… he practically had a new disease every month.

It was CMV that made him blind on one eye, Microbacterial infections, Tuberculosis infection. Kidney problems. Kaposis Sarcoma, for which he received radiation several times.

  • The lesions would get so bad in his mouth that he had a hard time swallowing and eat and stuff. And he had a rampant trush in his throat and mouth, so he had a lot of stuff. The time I knew him he was in and out of hospital a lot, and he died September 8th, so he has been dead just a little over a year.

He had no support system. He had one friend, he had me and one friend… and that was pretty much it. Lots of issues with his family. Dwayne was eventually moved to a SHANTI 24 hour houses, they were like hospices – they don´t exist any longer. It was sort of like a hospice. He was on oxygen 24 hours a day, his lungs were in pretty bad shape, and ultimately contracted a second PCP, and KS lesions went in to his lungs, and… In the last three or four weeks they stopped the medication.

  • Where did he die?
  • He died at the SHANTI-House, which was like a hospice. It was his choice, he didn´t want to be in a hospital.

I wondered about his family.

  • No one ever came to see him. His parents would not let him come to see them, it wouldn´t be the same anymore. They would call and say: ”We love you, we´d do anything for you, but we can´t be around.” They would be ostracized by other people.
    You know he had a brother, his brother wouldn´t come, his brother had a small baby, and he couldn´t be near him, you know. They wanted to love him from a distance.
  • And that was in 1986, when people knew!
  • Oh, yes! We sent them articles and scientific studies, his doctor called them and told them, but… they wouldn´t come anyway.

So… he and I were alone in the room together when he died. And he died with me, you know, sitting at the bedside, holding on to him, so that had never happened to me before, and the fact that he had no support system, I spent a lot of hours with him.

Here Gary started talking again about how they went in and out of hospitals, but also about different treatments, and it ended with that he was very close to Dwayne.

I wondered how Gary´s family had reacted to what he had been going through with his clients, had they been supportive?

  • Oh God, yes!
  • You said he was essential, or very important to you, this specific person, and how?
  • Well, for one thing. It was probably my first… you know, my first real full experience with a person with AIDS, as a volunteer… and… it was my first experience of knowing what it´s like to … love someone that you might not necessarily like, not necessarily ever met otherwise.

Had Gary met him under other circumstances he would have just walked by him, like he was just another person.

  • Well, I met him, and learned what that was like to love him. And to understand…

Gary talked about what he had thought love was, that it had to do with someone who was related to you in a blood line, or was a romantic sexual partner.

  • It was the first time that I really felt that sense of this really deep and committed love to someone who was none of those things.

It was hard to hear what Gary said after that, but I did hear him say: ”Oh, I learned so much from him…”.

Here Gary talked about people with AIDS that were between 28 – 35, that he didn´t see them as really adult people.

  • You know, you are still trying to pull yourself together, and then you have to deal with dying… And I felt like he wasn´t a complete person, a male mature person, he made a lot of silly foolish mistakes that young people make.

Gary talked about some destructive situations, where Dwayne became a victim.

  • Cause he would go into these situations in a not very… not thinking. Not a very mature person, but he definitely went through a process… near the end, where he softened up and he became really giving, and… and grateful to those people who were taking care of him. He let go of so much, you know, was much more forgiving to his family. It was just a process he went through that was… moving for me, and you know, I scattered his ashes, and dealt with his belongings after he died and stuff like that.

Gary and his friend had taken his ashes to Fort Point, under the Golden Gate Bridge, and scattered them.

  • So what happened when he died… was he conscious?
  • … Well, the day that he… we knew it was getting close, and then someone from the hospice called that it was probably going to happen now, and I went over early that day… and they had given him a little bit of morphine to slow his respiration.

Dwayne was breathing so fast that the breathing was uncomfortable for him. He was turned every two hours, because he could not turn him self, and they kept his mouth moist.

  • So he never spoke to me that day… bu the acknowledged me with his eyes. I mean I knew that he knew that I was there.

Dwayne then entered into a condition where his breathing would come and go.

  • So when I was there and his friend was there, and we´re both sitting – and here Gary showed me, he stopped breathing, was silent, and started breathing again – like that, and he´d stop and I could feel my adrenaline – he showed me how it rose in the air – He´s dying!

Gary and the friend took turns with Dwayne, and when Gary came back he started to think about the situation.

  • My feeling was; if I´m having anxiety and adrenaline when he stops breathing, that means I´m afraid he´s dying, and if I´m afraid, how can I expect him not to be afraid, and how can I be there for him?

It was a process that Gary had to go through, to let go of his own fear, and to let go of Dwayne, to let him go.

  • So when his friend left in the afternoon, and I was going to sit for a while… the attendant came in and turned him, and he knew he would´t be there when he came back, so he came in to say goodbye to him, turned him, washed his mouth, and left.

Gary moved to the other side of the bed, and as he sat there he started singing.

  • … I sang to him the songs I had sung to my children, and when I finished singing suddenly his breathing changed, and it was like… I knew in a real calm and peaceful way that now he is dying. So I got out of the chair and sat on the side and put my arm around him and held on to him, and I whispered ”I love you”, and he stopped breathing,
  • You did…
  • So he… it was very quiet, you know, he just stopped.
  • What did you sing?
  • I don´t remember, except there is a folksong I used to sing, it´s called ”Weep all ye little rains”, some old folksong… Yeah, you know what he taught me about living with AIDS, and what he taught me about dying, subsequently he taught me a lot about grieving.

Here Gary told me about other clients that he had had for a short time, when other volunteers asked him to step in while they went away, for example.  But then he continued with his current client, Ed.

  • So… Dwayne died… September the 8th, and five weeks later, on October 16th I met my current client, Ed, he is 35 years old from Montana.

There was a whole lot to tell about Ed, and Gary didn´t know if he had the energy to do that. But he started. Ed had dementia, he was diagnosed with PCP, KS and waisting syndrom.

  • So he got lunier and lunier, and at the same time thinner and thinner, and   it´s like… He´s been in hospice now for three months, and we didn´t think he´d live until we got a bed for him at hospice… and, the night before we went, we almost cancelled going because we thought he was going to die.

I don´t think he´s eaten what you would consider one full meal in three months. He drinks fluids, milkshakes, maybe a bit of jelly now and then, because he can´t eat, he doesn´t eat, but the hangs in there! It´s just he is dying very slowly, VERY slowly, r e al slowly.

What I learned from him, was I learned how we all think we live in our minds. If you are not right in your mind, then you don´t really exist. It´s just some kind of attitude about mental illness that I learned a lot about… that   it´s difficult, really hard to watch someones mind slip away.

I asked Gary to tell me about Ed, what he was like. Would he know what time it is, if someone asked?

  • It all began when I first knew him… and I didn´t know that he had dementia, but there were things like… It all began with the kind of things that happen to everybody, like you can´t find your check book, you can´t find your keys. Well it happened to him all the time, he would put things down and not remember where he put them, so he was forever not paying bills, not finding his keys, couldn´t find his wallet, couldn´t find his check book, lot of stuff like that.

When I first met him we went to see a movie, it was real obvious to me that he had a hard time following the plot. It was a dumb movie, it was not some that was real complicated or obtruse in a foreign language. You know, so little things like that, like being forgetful, being confused… down to being out on the street, not knowing how to get home, and not remembering someones phone number.

It came all the way to that there were days when he didn´t know who I was. Now he has no sense of time. He couldn´t begin to tell you what happened yesterday.

Ed could start a sentence by saying: ”Could you get me”… but forgot what it was he wanted, and there was a period when he was very demanding. Gary said it was a real struggle ”losing his power”.

  • Who was he before?
  • Who was he before? Oh, I don´t know. I think he was a very simple kind of person. He grew up in Montana, real close to – and here I had a hard time hearing Gary, I think he said ”his grandmother”, and his grandfather. They had a ranch.

Ed had worked a lot with horses, worked a lot as a child, and didn´t go to school much. He worked in grocery stores and eventually worked him self into a top position.

He had an older brother that moved to Oregon, and he followed, but not to the same city.

  • He was out with a friend of his and they went in to a gay bar, and in that gay bar he saw his brother, and it turned out that they were both gay, and they didn´t know.

Gary said that they then lived together in the same city, and double dated and had their lovers. The brother got sick, he had an infection in his heart, and Ed took care of him. Eventually the brother moved to Palm Springs and Ed moved to San Francisco.

Lots of things happened, Ed´s older brother died of AIDS, his mother died, his lover died and two room mates, and then he was diagnosed.  He had ARC for a long time, and was near AIDS.

He didn´t talk a lot about feelings. Gary said he didn´t think Ed had the language for it, to be able to say ”I feel this now”.

  • I always felt like he would just go down so far, and then just stop… Maybe there was nothing below that, I don´t know.

But now, in hospice, he would talk a little.

    • He likes to reminisce a lot about his childhood, to think back about the past, and… we did a lot of that, and… he´s very sweet now.

I eventually met Ed too. He is the man with the teddy bears.                                                                                                                                                                                                  Gary talked about different insights he got as a volunteer, as he was sitting there with Ed.

      • I go there almost every day, and sit there, and… from a volunteers point of view, it’s like: ”Why am I doing this? Of what good is it? He can´t remember. If he can’t remember that I was there yesterday, then what difference does it make if I’m there or not? Am I doing this right? Am I doing it wrong? Does it make any difference? What use is it?” I mean you go through a lot of those kinds of things, trying to figure out what the hell is going on.

I think that I come with the feeling that I’m there to learn something. I am not sure what it is that I’m learning, yet! (Gary laughed a little )… and, watching him… change… it’s like he´s become almost transparent. He’s so so thin, his bones all stick out.

Today he asked me – I scratch him, now he calls it itching – ”Would you itch me?” So, just because his skin is dry, and I have him roll over and slowly scratch his back, and his belly and his shoulders, and it´s alarming you know, but I´m used to it, but it´s still alarming when you put your hand on his body and scratch him, because it´s a skeleton…

It´s like watching him become holy… become transparent, it´s like watching him slowly disappear, you know. I just have this image of him, being transparent, being transformed… and maybe that is what death is.

In some ways it seems to me like… how extraordinary it must be to have the opportunity… to hang in there and to die really slowly, as oppose to being killed in an automobile accident.

Gary talked about the author Steven Levine who had talked about what many American´s say when they die, that their last word when they collide with a truck or something, would be: ”Oh shit!” Gary laughed a little.

      • Shit! Boom! Dead! So in some ways I think it´s kind of… It´s kind of a privilege. He never complains, he doesn´t have any like raging infections, he has a cough, real bad, but it´s not like he is in a lot of pain. He never complains.
      • Did you ever talk about that he is dying?
      • We did a little bit. He was real reluctant when we told him there was a bed available in the hospice, that he was going to have to give up his apartment. His father came from Montana and his other brother came from down South, and they had to move everything out, emptied the apartment.

So it was like giving up going into this place, and he said to us (Gary and the other attendant, a nurse): ”I´ll live there the rest of my life? ”… And we said yes, and he said: ”But it will be a long time.” And none of us said anything because we didn´t think it would be more than two weeks. Three months later and he´s still there.

I asked about his family. The father had remarried, and didn´t want Ed to come home to live with them, because they couldn´t get good help there. But Gary thought that it was the wife who didn´t want him to come. Ed´s brother had come home to die, and Gary said it had been horrible.

      • And his younger brother who is 28 years old, and this extraordinary handsome construction worker, you know, and just heterosexual to the core, and homophobic… and he´s just blown away and he can´t understand how he could have two brothers that were dead, it´s really hard for him… And his father can´t even say the word gay. But he´s trying.

The father had been to San Francisco to take care of some business matters and he had called Gary several times.

      • We talk on the phone a lot. I´ve become one of his support people, mostly because – he said to me one time: ”Well, you know the people here are just cow people”, he said, ”they don´t understand.” So I don´t think he can talk about what goes on for Ed with a lot of people in his own community. And I said to him, when I first met him, ”You know, I´m a parent, and I just couldn´t imagine the level of pain you must have, loosing two boys to this awful…”

And here I had a hard time hearing Gary, only words here and there. Maybe he was moved, I don´t know, but he quoted the father talking about ”a world of pain that you don´t see.”

It helped the father to talk to Gary, because he visited Ed so often. Telephone conversations would be difficult because Ed would just hang up without saying good bye, or he would be so confused that it was impossible to understand what he was talking about.

      • The only real contact you can have with someone like that, I think, is to sit there and hold his hand. Just to be there, with him. There´s nothing to be achieved from phone conversations, so he´d say ”Would you please tell him I love him” and stuff like that. So… it´s unfortunate… I don´t think he has abandoned Ed, it´s just the circumstances…

I wondered if Ed understood that his father was sending him messages.

      • He went through a lot of stuff when he was first diagnosed about his father, wanting a lot more attention and affection from his father than he was probably getting, and not getting enough understanding, a whole lot of stuff like that.                                                                                      And then, along the way he´s let go of of all of that. He´s let go of everything, he´s just there. He´s a pure existentalist, you know, it´s like he lives in the here and now. There´s no past and there´s no future, and he´s just here, you know. And he´s in a good mood a lot of times, and he smiles… he´s just there! He let go of everything, it doesn´t exist, doesn’t touch him.

Ed had friends, some did not visit, ( and Gary had issues about that) some did, and some had been helpful, moving furniture and other practical things.

      • Did he make plans for his funeral?
      • He wanted to be cremated and we talked about that… He doesn´t have a will, but everything is pretty well taken care of … and I´m just… waiting.

Gary laughed a little.

      • You seem to be in a pretty good mood, although have been working with this.
      • Oh, I am tonight, I guess… Oh, I sat in the car this afternoon and cried, and I cried which is something I never did growing up, or as an adult. I never cried.

Gary talked about the day they were moving Ed out of his apartment and to the Hospice.

      • And I went into another room and cried, cause I was just so touched by what was happening.

The attendant wondered what was going on, and Gary told him that he was not falling apart, but that he could not do this work without crying.

      • That´s how I do it, I said, ”You need to do that, I need to do that”… so that´s one of my coping mechanisms. And I talk a lot. My wife, she´s a nurse, she´s in labor and delivery, so I come home and talk about death and she comes home and talk about birth, and there are a lot of similarities. So we´re kind of (a) nice mutual support system.

Gary sometimes had a very personal relationship with his clients, he didn´t encourage them to come to his home and hang out, but they had been to his home and had dinner with the family.  And they had been to candle light marches together for examples, both Dwayne and Ed.

      • I have a special relationship with them, and it´s separate and different, but it´s not secret or forbidden, so my family knows my clients.

Gary thought that Ed felt that he missed companionship with women, and he had specifically asked for women attendants at the hospice. There was a real mix at Coming Home Hospice, so that was one of the things that Ed liked about being there.

      • What has this meant to you, for your other work.
      • It certainly has changed my priorities, and I often say that the volunteer work is seductive. I see it suck people in and change their lives. They want to quit their lives and do it all the time. You want to quit your job and do it all the time, you know, and I certainly have been through most stages… I don´t think it has affected my work much, except there was a time when I lived in my work, and now I don´t live in my work. My work is what I do, to live, (Gary laughed a little), so I have a clear sense that Yes this is what I do for a living, and I try to do it as well as I can.

Gary had a very supportive business partner, so he could work his hours the way he wanted to, come in late because he had breakfast with a client, etcetera. She would cover for him.

      • Let me say one more thing, that… that it consumes, it´s consuming, the work, and… when you are always aware, like I am now; how far am I from the phone? Cause I am waiting for that call, you know, because I have a client who´s real sick, but even if I didn´t, it´s like… I´ve had clients call me, ”I have to go to the hospital”, I´ve been in emergency rooms in the middle of the night, so there´s that kind of thing that´s consuming and has an element of excitement which fills up all the cracks and crannies in your life.

It´s not like ”Well, shall I go to a movie?”, or ”Shall I go out for dinner?”, it is like ”This is something that must be done!”, you know, it puts a channel of challenge, of urgency in the life, that I find fulfilling, so that´s one way in which it´s changed my life. And sometimes I wonder if that… that isn´t the way I´m using, using the work in order to avoid all the other kinds of grey areas and cracks in my life.

But in some odd way… one of the major changes I think it´s had in my life has been my relationship to my children and how very… very dear they are to me, and how I… seem to treasure a lot of moments more than I ever… And I try to stay in the here and now, and in some ways see them as clients… and see a responsibility to be supportive of them and to be non- judgemental, and to listen and reflect and give them power – which are all these kinds of little do´s and don´ts part of the SHANTI-training.

I wondered what it had meant to Gary, being bisexual, and he said that he felt really comfortable with his clients, but most people who are working in and around the epidemic are gay, and that he feels a separation from them.

      • I can go into a big grop of gay people and start talking to someone and the minute they find out that I´m married and have children – here Gary showed that they disappeared – I´m different. You know, real subtle, but I feel that, and also it´s like gay people have their own culture, and it doesn´t make any difference what your sexual preference is, you know, your sexual preference could be… someone of your own gender, but gay is a culture, it´s a community, it´s not JUST a sexual orientation. But it´s a cultural thing, and most of my life is spent around heterosexual people – where I don´t belong either! (Gary laughed.) So I go through little bits and pieces and things like that.

Gary talked about the extraordinary people he had met, men who he said had more love and commitment to their partners than many straight people.

      • A lot of extraordinary amount of love and care. And I´ve met a lot of lesbians in the same way, and straight.

He said it was a good feeling to be part of that community of caregivers.

 

We talked about grief.

Gary had lost his father at a young age, and had experienced grief then, although it took some time to realize that his father was never coming home again. But he was suddenly the adult in the family, the man in the house, so he never really dealt with it.

      • Maybe grief is just is just a painful acknowledgment of loss, you know, and so… For me it´s been better in some ways. There´s a beauty and a tranquility and a joy in a grief that all come together at some point… so that I can be with my 8 year old son and have a nice moment with him, and being filled with joy of being in his presence and grieve at the same time that we are mortal, and will he grow up with me? So this won´t go on forever.

We talked about people that were dying, and Gary talked about learning a lot from them, but not always in a profound way.

      • Supporting someone living with AIDS, you know, you can go through Suicide-intervention and anger and all sorts of stuff that people go through, you know, going through this process, but when you get to the point where we call them dying, there´s a kind of an extraordinary softness, just this wonderful kind of… The attendants who work in the hospice, what they love most about Ed is his smile… and they love coming in and making him smile… And it makes them feel good. Isn´t that funny, it´s just like being blessed by him. So I think there´s a lot to be learned.

Gary considered it to be an honour, to be with someone who was going through that process.

      • For that person to let me in and to share that is my privilege, you know… it´s something that… is a gift.

And here Gary started to talk about the old allegory about a tree: If a tree falls in the forest, and there´s nobody to hear it. Did it make a sound?

      • It´s a philosophical discussion around that, and I often think, if you suffer and I don´t witness? So in some cases I see… my job as a volunteer to be a witness for someone else’s suffering, which for them validates it… and that in a way is an honour.

Those words became very important to me, as I am also ”a witness”, so Gary gave me the title of my work ”To be a witness.”.

When I started my blog, I had to add really, ”To really be a witness”, because there were a lot of links to religious pages, about being a witness who gave a testimony.

I wondered if his work had meant something to him, spiritually?

        • Did you have a religious…
        • You mean, did I become more religious? Did I become… No, I don´t think it changed anything for me spiritually, except maybe it heightened it, my spiritual feelings… But I mean, it´s like did I become a born again Christian or better Catholic, or a kind of a Buddhist… No, none of that. And have I become a believer in reincarnation, no none of that, and I don´t even think I could describe my spiritual life to you, except I think I am a very spiritual person… and I feel tuned into other people´s spiritual qualities, but I doubt I could describe it to you.
        • Did you do the Death visualization?
        • In the training yes. Do you know what it is?
        • I´ve done it.
        • Oh, you´ve done it.
        • Who was there, at your bed?
        • … My children, my children. And my biggest grief was really my children.
        • Did you chose to go? (And here I meant towards the light in the tunnel. )
        • Yes.
        • And who was on the other side of the tunnel?
      • My father… (Here Gary sighed really deep and stated, as in surprise). That was an extraordinary experience for me. And that visualization was lead by a man with AIDS and he was really good at it… I just, I thought I would cry until my brains would fall out (he started laughing) I just thought I would come apart, I was just, it was an extraordinary experience for me.

The words after that are a bit confused, if he went back to life, or if he stayed on the other side of the tunnel, it is unclear where he saw the light at that time.

      • When I went towards the light it was ok, it was ok and I could see… I could see my wife and my kids at my graveside crying, mourning, and feeling that that was wrong, something very… (inaudible).

I asked him if he would continue, or if he would be burnt out, and he didn´t think so, as long as there was a need. He didn´t think he could walk away!

      • How can I know what I know, how can I have seen what I have seen, how can I have felt what I´ve felt and walk away?! It would be harder to walk away, than it would be to stay. But I have a real sense of urgency about the epidemic and a terrible frustration that, you know… There´s a war going on, and I´m part of this little teeny weeny battle over here, so I feel like it… I´m really not burned out.

My burnout doesn´t come emotionally so much from ”Oh God! I can´t take this!”, you know.

There were other things that would get to him, thoughts about why he did the volunteer work, getting to know young men who died, and then meeting another one, who would die, it was more like ”What am I doing here?! ”

But also everything he felt responsible for, the business, his business partner, his spouse, the children, his clients, and the support group, and visiting Ed who was sleeping, go home to have dinner with the children, visiting Ed again, and now talking to me – the day did not have  enough hours.

      • It´s like there aren´t enough hours of the day to do all the things I want to do. That´s where my burn out comes from, or could come from.
      • Go home!

But then we got to talk some more about grief, about some words by T.S. Eliot that he had written when his daughter died: Grief is like a spiral staircase.

      • So in that sense it´s something that you think you are going away from, and you round that circle, and there it is again, so it comes back and back.