Express 340; Those People: AIDS In the Public Mind

[Narrator]: In 1900 Bubonic Plague was epidemic in the ports of Asia. Its mode of transmission was not understood. When cases surfaced in San Francisco, the Chinese people were held accountable. Chinatown was cordoned off. Homes and businesses were fumigated and destroyed. Plague was termed "an Oriental disease, peculiar to rice eaters" and moves were made to quarantine all of the Chinese. The city health officer also laid smallpox at the feet of what he called, "the unscrupulous, lying, and treacherous Chinamen in their dark and dingy quarters." Leprosy too was considered an inherently Chinese disease transmitted to whites by opium pipes. Fear and prejudice intensified by uncertainty can easily ovewrite sympathy for those affected by such a disease. [Anonymous woman]: Everybody thought I was going to die. And all them doctors and everything was around my bed. I remember the priest giving me last rites. And you know,

I prayed and prayed to, you know, don't take me out right now because I still want to see my family grew up and my grandkids and all that, you know. They came to tell me about going up to the ward where they keep 'those people,' you know. And I don't want to go up there because I was thinking, god, people are going to know. I don't want nobody to know. Because people don't understand about the sickness. They just treat you like you got a plague or something. You cannot be yourself. You cannot let nobody know. You have to live a life, a very secretive life. [Anonymous man]: When I thought I got it from a female, which is what I still think to this day. The lady was a prostitute. Ok? And I felt that I come in contact with it that way, because she did tell me this. You know that she had tested positive. I was whisked away to a very far corner of the jail. I was isolated away from everyone, I was not allowed contact

with anyone, I wasn't allowed to use the phone I had to slip a message out to have someone call American Civil Liberties Union and have an attorney come see me so I could get out of the cell. [Simmons on the phone]: Shanti Project. This is George. Have you ever used Shanti services before? OK. You want to hold on a moment, please? Shanti Project, can you hold, please? [Narrator]: In Hindu scripture, Shanti is a word for celestial peace, sometimes repeated as an incantation. [Simmons on the phone]: Shanti Project, can you hold, please? Thank you for waiting. May I help you? [Narrator]: At the Shanti Project in San Francisco dispensing celestial peace can be nerve racking. The organization is a counseling center for people with AIDS. [Simmons to the camera]: We're averaging around 6000 calls a month and I answer them all. [on the phone]: Shanti Project. This is George. Jenna? Hi, this is an intake, please. He's a little distressed. [To the camera]: Sometimes it's

difficult. You just kind of have to hope that there's a pause so that you can kind of take a deep breath and go on. Because sometimes you hear things that, you know, are a little unsettling. [Herrington]: Yes, thanks. [Narrator]: To the Shanti staff funeral arrangements, emergency places to live, and suicide counseling are every day requests. Callers are often distraught. [Herrington on the phone]: Is your will a simple affair? Another word, sorry. Are we dealing with what is now real basic estate? Yeah. [Narrator]: Many of the diseases that strike people with AIDS, such as Pneumocystis pneumonia, can be grim in their later stages. Shanti counselors do not advocate suicide but will refer people to the Hemlock Society, which provides how to information about voluntary euthanasia. [Herrington]:

Well I just had a call from somebody that I know who it is but he doesn't realize who I am, and he's asking for, well, [inaudible] society and Hemlock Society. [Unnamed counselor]: You want to call him back? [Herrington]: No. The funny part of it is I really feel like I have to treat it as a confidential thing. [Unnamed counselor]: You know the individual socially? [Herrington]: Um-hum. [Unnamed counselor]: You can approach him from a social angle. [Herrington]: I think that's what I'll do. If he's willing to wait for information about the Hemlock Society, he's probably not planning to do anything right away. So... [Unnamed counselor]: Do I know who it is? [Herrington]: Probably. [Unnamed counselor]: I don't want to know. You know many people with a. [Geary to an audience]: The many people that are going through the dying process are obnoxious. And very demanding. [Narrator]: Hundreds of people come to Shanti as volunteers.

The public in general is fearful of people with AIDS and that fear is often compounded by a lack of sympathy springing from the fact that the virus is spread mainly among homosexuals and drug addicts. Most of these volunteers however know someone who has AIDS or someone who has died or have themselves tested positive for the virus. They are training to help patients and their families through the emotional turmoil of the disease. [Geary to an audience]: It's also very difficult when you prepare yourself for your loved one to die. And then they don't die. You know when the respiration starts to slow down you think, oh god you know, it's going to happen maybe in 40 hours, the next day it's even worse. You think, well maybe it's going to happen then you totally give them that last amount of your energy. And then suddenly the next morning they rally, they're feeling good. And you think, oh my god. [laughter] What am I going to do for another two

months? You know and that's hard stuff to talk about. [Narrator]: At these training sessions one of the instructors is Bobby Reynolds, native San Franciscan. His parents are dead and his only close relative is a sister. In 1982 his doctor diagnosed him with Kaposi sarcoma a skin cancer, one of the primary diseases that strike people with AIDS. [Reynolds to the camera]: I expected that he would tell me everything was fine over the phone when in fact he said, I'm sorry it's positive. So I went into shock. [To an audience]: Living with AIDS these past four years has been an incredible experience. I treasure the lessons that I have learned... [Narrator]: Today, Bobby Reynolds is a rarity. Life expectancy of a person with AIDS is about 18 months but chemotherapy successfully controlled his cancer. He has become a prominent advocate for the rights of people with AIDS, all the while mindful that with his immune system damaged by the virus

his body is defenseless against any disease that may come along. [Reynolds to the camera]: What is right now is I'm doing pretty good. And what's possible is a lot. There's a lot of possibles. [To an audience]: When I was first diagnosed people gave me, you wouldn't believe some of the stuff. Coffee enemas. [Laughter] [To the camera]: They need someone to hang their hope on, they need to have somebody to be a role model for them. And I think I have been able to do that [To an audience]: And so beyond dealing with your decision about how you want to be you'll end up having to deal with all this other stuff that's out there. [Susan Reclus]: I told my brother before I got pregnant That I wasn't sure how things would be between us because I didn't want

to take any chances with my kids. Every doctor I talked to said that I shouldn't have any contact with my brother because they just don't know. [Rodney Reclus]: It was the kind of thing, well if nobody can tell us what's going on then you know, what are you supposed to do? [Narrator]: Although they live just a few miles apart, Bobby and Susan have scarcely seen each other in the two and a half years since her twin boys were born. [Susan]: I told him that I would try and keep in touch with him on the phone, which I did and every week it would be like he'd get a little cooler. And we finally just more or less cut off communications. He told me that it was like I had rejected him and he just couldn't deal with it right now. And I couldn't do much about it because I figured, hey you know, I'm pregnant I'm not going to get pregnant again. I can't take any chances. I don't want anything to happen to my baby. [Reynolds

to the camera]: Hundreds if not thousands of people have heard me speak and were able to look at AIDS through different eyes. And I have touched men in support group and I have touched their families and I have been able to help them find some ways of dealing. And you know, she's my sister. [Rodney]: He likes Sue to be able to just jump and go but - [Susan]: But with three kids and Rod I can't. [Rodney]: It's just not possible. I mean it's family first and unfortunately he's family too. But it's immediate family and then it's the rest of the family. [Susan]: I realized that they say casual contact, you probably wouldn't get AIDS. But they can't guarantee it. You know, as much as my mind says, hey, it's okay. My heart says, well it may be okay but I still don't know. [Reynolds]: You know, I've never told my sister that she was

wrong for being afraid but some of her fears are irrational. And if she's going to continue being afraid, there's some day that I may die and she will never have been able to cope with those fears. [Narrator]: This woman was diagnosed with AIDS last year. She is addicted to heroin and believes she can track the disease through shared needles. She would not allow her name or voice to be used on the air. But these are her words. [Woman]: Well it hurts, you know, because you're carrying around a burden. And you know what's going on and you can't let anyone know about it. Because you know if they know then you're going to be an outcast. Well, they're very hateful about it and, "oh you got AIDS, don't get around me." Oh, I got in-laws that I wouldn't even think of letting them know, you know. And they're not stupid people. They're not street people either. They're

intelligent, college people. That's the reason I don't want to come on the media. I don't want to get nothing that will hurt my family. [Saxxon]: For the majority of the clients I work with will not have any kind of media presentation done on them at all and I don't blame them. I understand perfectly well with the Russian initiative pending, with that mentality floating around America, the potential quarantine, the potential lock up mentality. I certainly understand wanting to be secretive with their diagnosis. [Anonymous man]: Not only family and friends have concern for me, but they're concerned and worried for themselves, you know, and are very selfish attitudes, or, and I hope you see this. [O'Neil]: That's one great thing I must say about having AIDS is that you can really get away with saying anything. [Woman]: Is that right? [O'Neill]: Yeah. Like an old person or a child. [Narrator]: Sean O'Neil is a writer and a lecturer on

dance. He has also performed professionally. Last summer he made an appearance with the dance troupe in Sapporo, Japan. [O'Neil]: After about a week I started feeling, not feeling right, and having mainly just difficulty breathing. Thinking back on it now I cannot believe that I kept dancing and kept working. It was a matinee. It was an afternoon. And I knew that I couldn't do the performance because in rehearsal I couldn't finish the ballet on my own breath. so I didn't know what to do. And one of the girls in the company whose dad was a doctor got us an oxygen tank. [Classical music plays] As the music's beginning and [inaudible] is beginning I hear them pull the plug on the oxygen and in the first movement I danced with four different women, four different times. And so I did have a

couple of exits on the first movement where I would just run off stage and immediately go into the oxygen and try to get my breath back before I went back out. Because I would be under the tank and I would see all of these little Japanese girls with their, you know, all wide-eyed just staring at me like, you know, this is how Americans get through through a performance? So I just moved very numb and in a daze and just kind of, you know, kind of floated my way through it. On the flight home, there were Newsweek and Times articles about AIDS and I read this case history of a guy who have had pneumonia and everything symptom that he had I had. I went straight to my doctor and he diagnosed me with having pneumonia, AIDS, virtually there in his office on the spot. [Carolyn O'Neil]: I didn't know that much about AIDS. Of course, I had heard about it and he was very

very ill. The first time he was hospitalized for two weeks and looked for a while like he might not make it. So all we were concerned about at that point was to get him over the pneumonia and worry about the battle against AIDS later. [Narrator]: Sean's family took turns staying with him. Friends have helped pay his rent. Unlike most people with AIDS he's free to concentrate on his own thoughts and feelings. [O'Neil]: The reactions that I got from my friends essentially saved me. When you feel like you're close to dying, you just, it's the most unbelievable feeling You just don't have any time for it alone. I really started reading it an awful lot, listenting to tapes and meditating, and all of that. It makes you really look into your life, at yourself, and

your priorities and what you value. It's nice. It's really nice to be liberated from a lot of that stuff, a lot of that day-to-day, you know, things you think are important but aren't. [Anonymous woman]: Nobody really knows where that sickness came from. Oh, you know, they're just learning about it. But you know naturally they have to blame it on something so they want to say, oh, you know if you're gay you get it. You know I'm no more gay than flying to the moon. And I got it, you know. [Reynolds]: The beasties, the beasties all of us to some degree have the beasties. You wake up in the middle of the night and, how am I going to make my mortgage payment? What am I going to say to my boss tomorrow? I really would like a raise and I don't know what to say. For me it's fear. When am I going to die? Last Friday I started noticing difficulty swallowing. And

it got progressively worse over the weekend to the point where I didn't want to eat and then it became sort of painful all the time, so tomorrow morning I have to go in for an endoscopy where they're going to insert a tube down my throat into my esophagus and stomach to see what might be going on. [Narrator]: Lynn Eubanks is a pediatric nurse. She also volunteers for the Shanti Project. She took her training from Bobby Reynolds and is now assigned to him as an emotional support counselor. She went to see him when he was waiting to find out the cause of his sudden pains. [Eubanks to the camera]: I was real scared. I didn't, I didn't want it to be the start of a decline, which Bobby has gone without for four years. And I know that day will probably come, but I didn't want it to be now, I won't want it to

be whenever it is. [To Reynolds]: Hi! Look at you! You're getting ready for the party! [Reynolds]: I am! [Narrator]: The initial test results were a surprise and a relief. The pains appear to stem from an ulcer. [Eubanks]: Great. [Reynolds]: It's all I've been doing, actually since I got over the shock of it, was laughing. When I called people to tell me that all the test results were negative and that they treated me for an ulcer, they said they all say, oh great it's only an ulcer! [Laughter] [Reynolds]: So. [Carolyn]: We're done. [Narrator]: At about the same time Bobby Reynolds became sick this summer Sean O'Neil contracted pneumocystis pneumonia for the second time. His mother Carolyn flew to San Francisco from the East Coast for the three week duration of his treatments. [Carolyn to the camera]: He was doing quite well until he had the sinus operation which kind of knocked him down and put him wide open for

the pneumonia to get in but we'll get through this one too. [To O'Neil]: I'll see you upstairs. Good luck. [O'Neil]: Keep a fist? [Nurse]: Yeah. [Carolyn]: To wake up every morning you know you have to go in there, and the veins are getting more and more sore. They're starting to roll, and they can't get it with the first try and it's just terrifying. Last night he was extremely upset thinking about two more weeks of this. So I want to ask you, is there any possibility of shortening the treatment or is that out of the question? [Mehalko]: I would not recommend it. Because if we do shorten treatment there is a very high possibility that we'll get a relapse. [Narrator]: Dr. Steven Mehalko treats both Bobby Reynolds and Sean O'Neil. [Mehalko]: So if we want to really treat this and try to

keep it at bay for a while, then we really should finish up a standard course of treatment and not cut any corners. [Carolyn]: He's so good about this that you can't be any less than he is, you can't be a whimpering fool, and you have to get your own pain and your own fear and help him deal with his, because he's the one who's sick. [O'Neil]: Do what you have to do to get through it. The intravenus treatments were, they're horrible. [Carolyn]:

The first time we just thought, well we're different. We're going to live this thing. The other patients seemed so tired, and there was a resigned look in their eyes that just said, well this isn't going to be that smooth. And now, as time goes on, you just have to understand how difficult it is to live with this thing month after month. And Sean said he can understand now, why anyone just doesn't want to fight it anymore. [Narrator]: While treating Sean O'Neil for pneumonia, Dr. Mehalko was running further tests on Bobby Reynolds. His ulcers were not as benign as they appeared. [Dr. Mehalko]: Well actually it did turn out to be herpes. We got a culture report back yesterday and started him on anti herpes medicine in an oral form. It can be serious and it can spread to other areas but the main part of this is it's associated usually with an incredible amount of pain and people

are not able sometimes to even swallow their own saliva. [Reynolds]: So here it is now like a week and a half after that started, and they're healing pretty good but I'm still having fevers at night and I'm starting to have night sweats. [Narrator]: Until last year Bobby counted on his lover Mark to see him through the bouts of sickness and the fear of dying from AIDS. They had been together for eight years but Mark died last fall. [Reynolds]: Mark Mark Mark. He had its good points and bad points as we all do. He's a little arrogant. He was very strong willed about certain things. But we had fun. [Narrator]: When Bobby was diagnosed in 1982, Mark was apparently healthy but in April of 85 he too was diagnosed, struck by cancer, and a debilitating paralysis. The disease progressed quickly in Mark. [Mark]: And I,

I truthfully admit that I missed being able to go to restaurants and go to a movie. I mean I'm just not mobile enough to do that and those things are still important. I want to work. You know, I want to go in my kitchen and Cook. I want to be able to help him work in the backyard and - [Reynolds]: Well I tried to prepare myself as much as possible because I knew his death was inevitable. But you really can't. He went into respiratory failure. And he had done that twice before so I called to [inaudible] for the ambulance, the paramedics. But he was gone. He was the most important person in my life for a long time. And I think that says it all for anybody no matter what your sexual preference is, to you have somebody in your life that's the most important person and that's who he was. Is.

What's next? So I'll live it and I'll breathe it and I'll eat it for so long and then I'll say, break time. You know. Let's go blow bubbles, let's go read a murder mystery. Let's just unplug the phone and forget about it. Luckily I can do that. [Narrator]: Most people with aids don't have the help and support counted on by people like Bobby Reynolds and Sean O'Neill. This man is a construction worker with ARC or AIDS related conditions. He was diagnosed while serving a prison term last year. [Anonymous man]: Well, their reaction was medieval. The deputies coming by my cell, peering into the window, calling me a disease carrier and, you know, like I said they're just, their whole overall attitude is very medieval. You know it's like a witch or something. What the hell. [Narrator]: When he arrived in

San Francisco, this man went to the AIDS Foundation which assigned social worker Larry Saxxon to the case. Saxxon's job was to help people with AIDS and ARC get out of the worst of situations. [Saxxon]: They may have been AIDS or ARC diagnosis and they also are suffering from alcoholism and drug addiction. It's the most unpopular population you can possibly imagine and a lot of those guys are also racial minorities. [Narrator]: The AIDS Foundation rents apartments at undisclosed locations to house destitute people with AIDS while they try to arrange for Social Security, MediCal, and a place to live. [Saxxon]: Their lovers throw them out, landlords throw them out, friends, roommates decide they can't live with them anymore because they're afraid they're going to come down with AIDS, because of sleeping under the same roof with them, which is insane but people cater to that psychology of fear. They tend to go a little crazy. [Unidentified resident]: DeMille, I'm ready for my close-up, DeMille. Yes, yes. [Saxxon]: They're all very independent, extremely independent. Most of them have not

been in welfare before. [Unidentified resident]: Don't worry about it. If it don't kill you, it will make you fat. [Unidentified guest]: We eat well here at the Mill Valley Rotary Club. [Host]: Today we're honored to have you with us as our speaker Dr. Mary Reddick, who is the executive director of the Marin AIDS Support Network. Would you please welcome with me - [Narrator]: As AIDS spreads beyond the commonly known risk groups, gay men and intravenous drug users, all segments of society have a stake in learning about the disease. The fact that the AIDS virus is only transmitted sexually or through the blood is not always reassuring news. [Reddick]: One of the things that I learned in doing AIDS work was that I learned that there is no such thing as a close sexual boundary. About half of the gay men in the United States sleep with a woman at least once a year. We run the hotline at the Marin AIDS Support Network and we know the kind of the level of fear. [Unidentified woman]: I

was in the hospital, I'll never forget this. The nurse was taking me out. I didn't have that sickness then. Walking me down saying mean things about homosexuals and how they got the sickness and, you know, how God's punishing them. And I said to myself, damn, and she goes, when I go and take care of these patients, but she has no feeling for them. And I thought, what if she was at my bedside when I was dying and didn't have no compassion and thought I should be punished, where I'd been dead, you know. [Narrator]: The epidemic has become a political phenomenon. Candlelight memorials in San Francisco and elsewhere have turned into rallies against discrimination. [Attendee]: Clay, let me get a light. I think they're going to start. [Narrator]: AIDS is a frightening disease, but to those who have it public opinion is frightening and threatening as well. [Reynolds to the camera]: People's fears are real but they may

not understand what my lifestyle is like but they understand that I'm a person. That I'm hurting. So that they don't send me off to hell just because I'm a gay man or just because I have AIDS. [To the crowd]: Together, the citizens of San Francisco will continue making a difference. Together. Together my friends, together. For we are a family. And we are not alone. Keep looking for the rainbows. Thank you. [applause] [Narrator]: The AIDS virus has already claimed more than a 1,000 San Franciscans. Thousands more will join the willing ranks of those people, before there's even hope for a cure. [Speaker to the crowd]: ... for joining with us in this moment of healing. You may say the names of those who have died or those who are now living for whom your heart hurts. Let us begin first

with the names of the three men who began this candlelight march three years ago. Bobbi Campbell. [Crowd]: We open our hearts. [Speaker]: Gary Walsh. [Crowd]: We open our hearts. [Speaker]: Bobby Reynolds. [Crowd]: We open our hearts. We open our hearts. [Crowd chatter] We open our hearts. We open our hearts. [Crowd chatter] We open our hearts. [Silence] [Silence]