Talking to Laurie D.

 

Because of Sam…

Laurie D. gave me the first interview in San Francisco, 1987.

We went out on a terrace at the San Francisco General Hospital, it was towards the end of lunchtime, so it was peaceful around us.

Laurie smiled, a lot. She seemed to belong to an almost extinct kind of women, sort of old school with braids.

Laurie was a Lay assistant Chaplain, at the Episcopal Chaplain´s Office, trained by Connie Hartquist.

  • I am here because my friend Sam died of Aids, and I wanted to do something. I couldn´t do something for Sam after he died, but there was still a lot of grief that I needed to be doing something with.

Laurie lived on the other side of the bridge, in the East Bay, and said that it was such a difference, as if AIDS didn´t exist, other than as something to laugh about.

She mentioned the actor Rock Hudson, who was the first famous person in the US who came out as having AIDS, which made it real to people.

  • I think that says something about United States, that it took a movie star to do that. You know that´s really pathetic in a way, yet, Thank God for Rock Hudson!

She said that people loved him.

  • Whatever that kind of love was, people loved Rock Hudson! And so I really think that turned the tide here in the country.

Laurie worked as an editor at the University of Berkeley, and volunteered at SFGH one day a week.

She said that she always wanted to be out there doing good, but had realised that she was best suited to work with words. But when Sam died, she decided to get involved this way, and she thought it was good for her, because it gave her a balance in life.

So who was Sam?

He was a man she had worked with. His partner Alex had already died of AIDS.

  • Pretty much the whole time I knew Sam, he was grieving for Alex, and he even wanted to die. But when he contracted AIDS, he no longer wanted to die, he wanted to be alive

I was able to be with Sam in his illness, and that was a really profound experience for me to… You know, one of the few things I could do for Sam was to rub his back. He felt bad all the time, sometimes intensely bad, nauseated and awful, but sometimes just low key bad, and he couldn´t eat. I couldn´t make delicious little dishes for him. It just made him feel worse. But rubbing his back made him feel better, and that´s the case with a lot of AIDS patients.

Laurie talked about back rubs and foot rubs, as helpful for AIDS patients.

  • Foot rubs are particularly good in the case of AIDS patients, because sometimes every other part of the body is in too much pain to be touched.

We talked about pain. She said that AIDS is unspeakably painful.

  • It´s not AIDS per se, it is different things that people with AIDS have. I know the last stages of Kaposis Sarcoma can be just the most painful thing in the world, and there is nothing but morphine. You know there´s no inherent value in pain. Often people have profound growing experiences from being in pain, either spiritually and/or physical pain. I think alleviation of pain is/should be, a very high priority for the medical and hospice community too.

There were not always volunteers available, and the chaplains were very busy as they served the whole hospital. Laurie mentioned that there was a lot of burnout, when working with AIDS patients.

  • How much of your work is spiritual?

Laurie laughed a little and said that she thought everything was spiritual. It could be giving a foot rub and not saying anything.

She said that even when people say no, when she introduces her self and offers them a back rub or a talk, is spiritual.

  • And I go OK. Take care, and I walk out – I think that´s a really good spiritual things, to let people know, that to be connected with God doesn´t mean your gonna step on them, or insist on what you want.
  • Do you go from room to room every time?
  • I stop in and see the SHANTI workers, and say: Do you have any referrals for me? and they go: Go see so-and-so, he is really down. Go see so-and-so, he tried to kill him self last week. DON`t go and see so-and-so, he´s just burned out with people. You MIGHT want to go see so- and-so. His mother is here, his mother is really freaking out, I think the mother needs to see you more than he does. Or… So-and-so could really use some massage, but I don´t know if he feels comfortable about it, you could just try.

Laurie said that the cooperation with SHANTI worked well.

  • It´s been an in for me that I do massage, but I think the truth is, that the people who get referred as needing to see a masseuse, are the people who need to see a chaplain too.

Sometimes the people at SHANTI will say: This person could really use some masssage, or they could use comfort at any level. And I always take my cues from the person, him or herself. If they want to talk, I´m there to listen.

One thing that´s impressed me is that patients really DO give a lot – they give clues.  If they don´t want to talk, they don´t talk. They want you to go away, they say: Well, thank you for coming. So it´s not hard to read what the patients want from you.

  • What about different religions?
  • Well, people are often… both Christians, and people that aren´t Christians, whether that´s Jews or Buddhists or Nondenominational, they have a lot of reservations about Christianity, and I understand that. I´ve certainly met more than my share of Christians that I wouldn´t want to have anything to do with, and I´ve certainly been burned by the established church, and I think anyone on the AIDS Ward, by definition, has been given a bad deal by the church, just in terms of what Big Name Preachers have told them.
  • How do you mean?
  • Oh… Jerry Falwell and others saying that AIDS was just as much as they deserved. He is a TV-evangelist. It is nothing weird, it is something very fundamental and well established.

I told Laurie that I had heard the day before that some people thought they were the people of God, so they would never get AIDS.

  • See, that´s more of They have nothing to do with me. I would never get AIDS. No one I loved would ever get AIDS. No one I have ever seen will ever get AIDS. And it is just a lie! It is just a lie. But that´s how human beings work. If you have never loved someone with AIDS, maybe it just doesn´t touch you. But, you know, the thing is that they probably DO love someone with AIDS or a gay person that is not in the position to be able to admit it, or have it admitted to them.

I wondered what church Laurie went to.

  • At this point I don´t go to church. In a sense the chaplaincy is my church, because… I have been too hurt by the church, and I can hardly stand to walk in a church right now.
  • Before this, or during this?
  • Oh, before this, and certainly the AIDS-crisis has been part of my disappointment with the established church.

Laurie had a background with The Plymouth Brethren.[1]

  • They pay a lot of attention to the Bible, and they don´t believe in clergy, so in a sense I still share some theological perspectives with them. Like you say: Where do you go to church? But my view is that I am the church, the other chaplains are the church, the patients are the church, so…
  • Do you hear a lot of doubts about God, and disappointment about what has happened to their lives?
  • Well, you´d be thinking so, but more than that, I hear: God is punishing me and I deserve it. I always try to suggest that that´s not the case, that it is not a punishment, that God isn´t getting any satisfaction out of their suffering.

It´s not so much that I tell people, it´s that I try to hear them out to what they are thinking and feeling, and then to suggest other ideas. Maybe they can see it in a different way, you know, that God doesn´t hate them, that God is not mean, that God in fact loves them and is really sad and sorry that they´re in pain.

  • Don´t they ask why he doesn´t do anything to relieve them?
  • Yeah, and there is sort of no answer to that. It´s real clear to me that I don´t have answers in that respect.

I asked if Laurie could tell me about some people she remembered

  • Well, a man named Alex, touched me very deeply. I came to his room, and he had just been admitted. He had a Mohawk haircut, you know, with a streak of chartreuse in it. I asked him if he would like massage, and I massaged him and he just talked nonstop for hours. And every now and then when we would be talking, he would say: You know, I don´t usually talk to people like this, or, You know, I´m not a nice person! I don t talk like this. And he talked a lot about his past, about what he wanted to do, and at one point I said – and I am kind of shocked when I think that I said it – I said Are your parents alcoholics? And his eyes got wide and he said: How did you know?, and I said: Mine were too, and you sound just like me in some ways.

Laurie visited him again a few days later, and told him that it had been profoundly comforting for her to be with him, and he said that it had been that for him too.

  • One thing I really remember, was that he asked me something that AIDS patients will often say: Why are you here? What are you doing here?, and I said it, and it sounded strange to me, because I hadn´t said that many times. I said: My friend Sam died, and he said I´m sorry.

And you know, to have someone say, really caringly, I´m sorry, is a really profoundly healing comforting thing, and I mean… That´s not at all rare that I come away felling much like… Wow! If they are half as ministered to, as I am, they are really lucky, you know.

I often thank patients, and often patients will be really surprised, like… Oh, did I give something?

And I think that is really good for someone who is sick and in pain and anxious and locked up in a hospital, stuck in a hospital. It is so terrible to be sick, and then it is even worse when you are in a hospital and people are going in and out of your room and they are doing things to you and they are hurting you, and you don´t know if they are telling you the truth.

And maybe your friends are not taking care of you as much as you wish they would, and there´s just so much happening and you feel really helpless – To be able to give someone something is probably really helpful for a patient.    I mean, it´s like you lose the line between giving and receiving.

 

Laurie mentioned another man, Ron, that she had talked to. She said she could tell that he was trying to figure out if she was going to hit him with the Bible, or lay down the Law. But he slowly relaxed in her company.

  • After a while I left, and then a nurse came and got me in the hall and said: The doctors have just been talking to Ron, and have told him what his condition is, and he has chosen not to be given any extra life support measures.

The nurse had asked him if he wanted to see a chaplain, and when he heard that Laurie was on the Ward he had said: Oh, the one with the braids? She´s cool, send her in.

  • And I went in, and we just… We talked about his death, cause that was what was at issue right then. I asked him what he wanted to do before he died, and we talked about that.

Ron stayed at the Ward for a long time, and then he was transferred to another hospital for AIDS patients for long term care, Garden Sullivan.

  • I said, I´ll think about you, and he cried and said: That really matters to me, you know, I don´t want to be forgotten. And I think that does matter a lot when you are thinking about your own death.

 

I wondered if Laurie saw much of parents, lovers or friends of the patients, but she didn´t.

  • Privacy is so important to me personally, that it is very hard for me to walk in when someone is with friends. But also, I´ve been with patients who really wanted me to come, to be a buffer between them and their parents.

You know, sometimes a parent will disown a child who has come down with AIDS, and sometimes a parent will come, and won´t go away. And even if the AIDS patient is really grateful for his mom to be there, sometimes it´s just… It can be too much to have a parent there day and night.

And AIDS patients… I mean my experience with AIDS patients has been that they are super conscious of the trouble that they are putting their parents through, and their lovers. That´s one of the hardest things, is that they are feeling bad about what they are putting their loved ones through.

I remember my friend Sam saying, in a moment of terrible grief: You know, I feel like I´ve ruined my parents lives. And I don´t think he did. For one thing, he went home to die, to help them get through his death.

But I see that with a lot of AIDS patients, tremendous concern for the people they are leaving behind. A lot of patients have been left behind by their lovers, so they know how hard it is, and often they do a lot to help whoever is left behind.

I wondered if Laurie had ever been scared of being infected with the virus, and she said no, but told me about one time when she had given massage to several people, and then she scratched one of her eyes and got an infection. Since then she wears disposable gloves.

  • I think when a patient has fungus, I will wear gloves. And it´s hard cause you don´t want to hurt anyone´s feelings. But it´s not that AIDS is communicable, it is that AIDS patients gets things, from chickenpox to herpes to fungus, that healthcare workers DO need to be careful about.

I wondered what this has meant to Laurie, to her thoughts about her own death.

  • Well, I guess I go ahead and be frank. I´ve never worried about my own death. In fact I´ve spent probably most of my life thinking it might be nice to be dead, and I never more wanted to be alive, then now

It´s not so much that being with AIDS patients has helped me prepare for my own death, but it is really helping me cope with pain in my life, and I mean in a way – this sounds corny, but there is just so much… I see so much forgiveness, and so much… compassion, and so much… let me think about the word… so much gracious acceptance of really terrible, terrible things, that it´s… I don´t know if you´d say… it´s inspiring, or it´s instructive, but it´s really helpful to me.

Laurie spoke about patients being abandoned by family and friends, on top of them being sick and in pain and facing death.

  • One way or another, people get left alone, and that´s terribly painful, and you know, I see anger and hurt and bitterness, but I also see tremendous graciousness and acceptance.

I wondered why Laurie had chosen to be an Assistant chaplain, and not chose to volunteer for SHANTI.

  • Well, I am a Christian, even though a lot of Christians, like Jerry Falwell, probably wouldn´t think I am. SHANTI is sort of… Well, they care about spiritual dimensions, but they are not specifically Christians, and I am. I sort of know the name of my God, if you so will, so that´s one of the main differences.
  • Have you lost many patients?
  • Well, once someone is diagnosed with AIDS, they´ll be in the hospital two, three, four times. People will more often be discharged than die, but I have lost patients. I know what it is to come in and to open the Notebook, and to think: Did he die? Did he die? Oh!… He is ok. And also to not even be expecting it and come in and have someone say: John died, and just think: God damn it! But you know, sometimes you go: Oh… that´s a relief. You know, some deaths are like that.

I was with a man, I guess it was my only real deathbed-experience. They had expected him to die anytime, for days. His mom was there, and she was standing near him, stroking his head, and just saying: Let go Honey, it´s ok, just let go. I´ll be ok, and you´ll be ok, but just let go

And I was there for a long time, just stroking his hand, talking to him, but he… Who knows, people have their own reasons for holding on, and sometimes only they know…

  • Did you lose him?
  • Yeah, he went. You know, at this point of the AIDS-epidemic there are a lot of deaths, cause the people are coming in for the fifth or sixth time in the hospital, and the disease is really far advanced. There are a lot of deaths, a lot of dementia, and when dementia comes, you know, death… is really a relief.
  • What is dementia?
  • The brain goes, you know, the body functions, and when someone is that far gone, death is a relief to everyone.

Before I interviewed Laurie, I found out that she was just about to get married, and I wondered what he thought about her volunteering at the AIDS Ward.

  • I think it was the first night I met him. I said: You know, I work with AIDS patients, and I touch them, a lot! What do you think about that? If that threatens you I don´t want anything to do with you, and you might as well go right now. That´s really funny that I did that, looking back on it. But he thought it was great.

Laurie said he was really supportive and prepared to listen to all she had to say, because she really needed to share things with him when she came home, including really gruesome horrible stuff that no one else in the world wants to hear about.

  • And he´s willing to… you know, go with me, so… He´s a good man.

I thanked Laurie for talking to me, and then we went to the AIDS Ward. She washed her hands when she came there and she washed them when she left – a ritual I soon adopted – and then she showed me around the Ward.

The Nurses station was in the middle of the Ward, and around it all the rooms.  At the back of the Ward was the Elizabeth Taylor Lounge, where the patients had their own kitchen, sofas, a large television screen, a piano, fruit, candy and a lot of flowers.

Laurie introduced me to Alison Moëd, I finally got to say hello to her!, and to Ed Wolf, a counselor from SHANTI.

Ed Wolf told me that he often gave Laurie difficult challenges, and that she could handle them. This day he had a very special challenge for her: A young AIDS patient had just been told that his mother had passed away in New York. He needed someone to talk to and Ed thought that Laurie was the right person to talk to him.

So we said goodbye, and Laurie promised to send me an article that she had written about her work at SFGH. I will return to that later.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] An evangelical Christian movement, that started in Ireland 1929.

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).