POV; Living With AIDS

You You There's just no guarantees I've found.

No guarantees for anybody really. Yeah, I You know, I can't do a lot of things anymore. I feel like an elderly person in a room and Week getting my social security Old people and I have a lot in common At age 16, Todd Coleman left Denver, Colorado to come to San Francisco. At 21, Todd was diagnosed with AIDS. He died the following year. San Francisco has

become a model for compassionate community response to a growing national epidemic. Todd received specialized medical care at San Francisco General Hospital's AIDS clinic. Todd's doctor was Constance Woffsey, a noted AIDS physician. How do you feel as far as the fever is and the sweats and all of that now compared to about three weeks ago when you were feeling really pretty lousy? Much better, at least I would say at least 80 % better at least. So you were down here and now you're sort of up here and it's still like this but at least it doesn't go back down there again. Okay, now what about the nausea and vomiting? How much food are you able to eat? Today I'm being breakfast and a bowl of cereal and a half a can of lobe before I left here and I'm still feeling kind of hungry now. But like I say, that's often on too. Okay, why would I like to do this? Have you get up here? I don't think he needs to do a major exam, but I do want to hear your lungs

and look into your mouth. To learn more about Todd's condition, his lover Bob began to accompany him to the hospital. Bob and Todd had met six months after Todd was diagnosed. Todd told me he had AIDS. I mean, there had been a complete turnaround in my feelings in regards to a person with AIDS that they aren't lepers and you're not going to catch it by touching them. I had never known anybody yet in my life that had AIDS, much less someone that I was attracted to. We started talking about the shoddy home and he started telling me about when he was diagnosed and all this time my paranoia is reducing as I began to understand more about his sickness and the situation he was in. My own fears of getting AIDS were radically reduced

because we were dealing with it rationally than irrationally. Would you call it Kapasis? Kapas? Kapasis sarcoma? No, I see it. It's the ambulance. KS. His immune system destroyed by the AIDS virus. Todd was vulnerable to diseases like Kapasis sarcoma, a rare skin cancer producing internal and external lesions. Although there is no cure for AIDS, Dr. Wafsi can treat the KS with chemotherapy. Let me ask you a hard question. What if you don't get strong? What if somebody could tell you you weren't going to get stronger? Does that change your feeling about wanting to be treated for the Kapasis? Or does it raise any questions in your mind? I don't know if you're going to get stronger or not. I'm not telling you. You're not. You make a lot stronger. You may not. Then I probably do something about it. I mean if this goes on too long without me getting stronger or putting on more weight, then I'll do something because it's obvious it's inside of me.

It's in my mouth and I don't want anything to disrupt. As Harry said, my eating. But it doesn't hurt or anything like that. Right now we've got so much time. I think we've got plenty of time. The lesbian and gay freedom day parade in San Francisco is the world's largest annual gay pride event. Where gay men and lesbians join friends, family and supporters to celebrate their liberation. With the onset of the AIDS epidemic, the parade began to reflect the community's support for people with AIDS. Each day you were doing 1985, one person died of AIDS. Two more were diagnosed. Todd was real proud of the ride shotgun up front with a truck. Being in the parade and all the cheering and the people clapping and

he was happy. And it wasn't very often that I could get him to be happy and know he had AIDS. Because the happy times were the goofy times usually when we would forget about the troubles. And the parade, it was both together. It was happy and it was death. It was the fact that people were riding in the truck that were dying and he was dying. And people were sympathetic and appreciative to him in his situation. Happy, let's be a pride day. During the last few months of Todd's life, he became involved with the AIDS Hospice Home Care Program. Upon entering the hospice program, Todd was assigned a home care team, led by his nurse, Eddie. I met him at a time in his life when he was very exhausted. He was reluctant to ask for help, but

when it came, he was so grateful and so accepting. I remember Todd always saying how fortunate he was. All he talked about was how fortunate he was to have us, to have Bob, to have such a wonderful man to take care of him. He always focused on how lucky he was and what was going well in his life. And he was able to accept care in a way that not many of us are in a way that I probably wouldn't. As one of hundreds of AIDS volunteers in San Francisco, Paul helped Todd with household chores. After taking a two week break when his first patient died, Paul was asked if he was ready to meet his next client. They told me about Todd and asked me whether or not I wanted to be accompanied by either the nurse or the social worker. Because I hadn't done

so with my first patient, I liked to not do so with Todd. I wanted to meet him by myself. Well, I went over to where he was living and he buzzed me in and my first impression was, God, he's young. And we shook hands and he said, how about a hug? And at that point, I knew it was going to be okay that we had a match here. Well, it's going down because I'm doing some sweating right now, but it's going down, but I still feel real weak. Do you want to go up and lay down and put on the oxygen? Yeah, I think I should put on my oxygen. Todd lived in a subsidized apartment for AIDS patients. The residence is managed by the Shanti Project, another organization that provides support for people with AIDS. Members of Todd's hospice team, including his social worker, Kitsi,

visited him at the Shanti apartment. Anyway, about social security. I told him, I said, I have AIDS and I can't make it to the office. I was incredibly impressed with him the first day I met him, especially for his age. He really was managing the whole process of his illness very well. He knew what he needed. He knew his philosophy about it. He was very direct about dying and about wanting to live. You heard from your mother recently? Eddie and I called her, I think last week, and talked with her. Yeah, Eddie said she'd call her again. She cried, of course. There's not a whole lot she can do, and she hates that, you know. But, because she tried coming out here once before, and it just didn't work. She went right back, and I'm glad she did,

because having her just sitting around with me, waiting for me to kill over. Just, it would be no fun at all. Right. Well, I think it's hard for everyone to say a feeling like there's nothing you can do. And it's real hard when you care about somebody. And that's one thing that I've found out about myself. There's only so much I can do. You know, there's only so much I can do. I can try and try and try, but I can only try so hard. So glad to see you, to see you too. How are you feeling today? Oh, kind of out of it a little. Randy, a hospice volunteer, was Todd's masseur. I got to find out about Todd through the volunteer coordinator. And then after that, I got a call, and they said we have somebody new for his name is

Todd. You're really going to like him, and he's going to be around for a while, which means that hopefully he wasn't going to die the next day or the next week. I love that lotion over here, so it is a called space professional massage lotion. Old space. Yeah. That's every one of their father. One of my feet have been drawing out since it's going to be missed our last. Really. I can bring some over for you. I've got some cream. I'm ready for you. Okay. Back. I'm on the stomach first. Face your head this way. Okay. Well, I just stayed there too long ago, so be careful with my tummy. Okay, I won't put my knee back there. Just relax. Okay.

Enjoy. And the person with AIDS, as they get more and more ill, the people around them stop touching them. And we as humans respond very well to touch. It's a daily requirement to be held. And for me, I feel the main thing that we can offer is that touch back, that human contact that they may be losing. My experience as a volunteer has taught me a lot. And one of the big things that taught me is unconditional love. And that's what comes from a person who is sick

and nearing to death, that the barriers that they have put up all their lives to keep themselves from being hurt are down. And what is coming out is this very strong love. And I try to give that back. Our relationship was basically developed on the concept that he was going to die, and that we had only so much life to live with each other. We never really developed what is considered your basic normal relationship. Most of our time was spent going to movies, going to dinner, or laying at his house watching TV, or him napping. Hey, hey, you've had enough. Oh,

meow. As time progressed, though, it became more and more difficult. I took more care of him because he was too tired. He was still thinking of concepts of being healthy. Sometimes he was a burden just to get the frozen food out of the refrigerator and cook it. And rather than do it, he would not eat. Today was really the first day I cried for ages. You know, I started thinking about Bob and afterwards. It just made me real sad to think of how he would be feeling. And it's good for me to cry a little. Because I have it, you know, right? I think it's part of just realizing what's happening and facing it. And thinking about Bob, you know, I love him very much. And that's very hard. You know, I don't want to leave anyone.

His time progressed to got more and more difficult for him. And he felt a great deal of guilt for me because I am healthy. And to go six months without sex is a long time. And it was really a devastating term that he had lost this power of sexuality. But in turn, we were moving into a new phase of love and caring that Todd really didn't quite understand yet. I don't think he didn't really understand loving someone beyond a sexual point. I think that's why he had many failures in his previous relationships that he had learned to sexually love but not love for love, sake, alone. Never in one place have

so many people stood up for themselves and taking care of each other in the way that it's going on here. And things could change even more if people can see this, see this part of AIDS and not just see this horrible disease. People talk about this horrible disease. But see the people who are getting it and see what they're doing for themselves and see what they're doing for each other. Todd's volunteer Paul is a lawyer. You know, he goes downtown in a three -piece suit and then comes and washes Todd's laundry when that's what he needs to be done. And I don't think that's happening anywhere else. And these were total strangers before. Both of the people that I dealt with knew that they were terminal. They still were more concerned for me was it can be for me to come over. If it wasn't too much problem, could I go shopping? They were always very solicitous. It's things of that nature that

make me a better person. Help me become the person I've always wanted to be because I see it in action. With people that are facing the ultimate crisis. And do it with a concern for those who will be living with AIDS once they've died. Todd's dealing with death was one of my greatest attractions to him. As more but as that may sound, it was because a man had an enormous courage that he was never afraid to die in that respect. His only two fears were the capacies and the loss of his mental facilities. And he definitely had a very strong spiritual feeling that he did not want to be maintained. But it was always he had the courage to make the decisions when the legal, the paperwork had to be drawn up as far as what he wanted done after he was dead, what he wanted

done with his possessions. All these were subjects that we discussed and talked about. And as that's all we had was our talking time. The choir, see the trees we're talking about. See it right here in San Francisco, right? Yeah. Okay, we'll shoot almost straight across east into Yosemite. We would go to Yosemite that weekend that he went to the hospital. And he said, well, 20 days, the patatamine treatments will be over. And then we'll go to Yosemite. And we'll go on our trip because he says, don't worry, don't worry, I'll be well. I'll get well. And we'll go to Yosemite. Five days after entering the hospital, Todd went into a coma. He never recovered. I was not in the room when Todd stopped breathing. They were doing a medical procedure and Todd stopped breathing. And they came and got me instantly and I came in there. And all I could... I guess my sympathy for myself was going to

hit later. I'm going to feel sorry for myself because of my loss. But all I could feel then was how relieved it was for him because he was breathing so hard. Every breath, every breath he took was just a tremendous drain. And how hard he was fighting. And I could see the capricees, the lesions growing in the week he was in the hospital and he hated that so much. And all I could think was thank God that he's dead now instead of later when it would have been more frightening for him and more difficult for him to cope with. One thing about his death, it's hard for me to say exactly how the death affects me because people are dying so fast that it's like what I imagine being in a world would be like. That you can't process it fast enough.

Todd's death is the ninth one that I've experienced as a volunteer since last November. My time with Todd was relatively short that each death is rough. And each time you have to let go and move on. And Todd's was like that. Each year at AIDS memorials, thousands of new deaths are mourned. Just don't turn away from a song because a lot of kids, a lot of men need help. And that help is appreciated. And we need as much of it as we can get because it's killing too many of us. It's just killing too

many of us off. I don't want to see any other 22 -year -old go through this. I really don't. And if they do go through it, I only hope that there is fortunate as I am. And I really hope that there is fortunate as I am.

And I really hope that there is fortunate as I am. And I really hope that there is fortunate as I am. And I really hope that there is fortunate as I am. Thank you.