It was a man at SHANTI, Paul Stern, who sent me to Keith and Gery.
I actually found my way to them, and they welcomed me in to their very cozy home that they shared with 3 or 4 dogs and two cats – they called them their children.
Keith, the younger man was small and thin, with punk hair and a mustache, and Gery was more heavy built, with a beard and large brown eyes. It was hard to tell that they were sick, both of them.
We sat down in their kitchen, and they offered me coffee and a coke.
I was ten minutes late and apologized, but that was no problem. They were used to it. As public spokes persons for SHANTI they had been interviewed a lot.
There had been journalists who said they would come at five, but turned up exhausted at nine, asking them what it felt like to be dying. And then they would disappear out of their lives, and Keith and Gery would never receive articles or anything.
However there had been journalists that had stayed in touch and sent articles. They specifically mentioned Wall Street Journal, that had interviewed Keith, and sent flowers on the day the article about him was published.
They really wanted to quit giving interviews, but they kept on doing it because they wanted to help others, by speaking out.
As I talked to Keith, I realized that there were no barriers! I landed straight in to his medical story, and the information just flowed from him.
- I was in the hospital with meningitis… and I mean! They told Gery that I was not gonna make it, cause I wasn´t reponding to nothing. I was a veggie, you know.
- Are you on AZT?
- My case is too severe. There is too many things going on with me, and they don´t want to put AZT inside me. I tried three times to get it.
Gery added that Keith had been on Interferon therapy for about 7 months, but they had to quit because he couldn´t take it anymore. It had made him violently ill.
- Like vomiting?
- That´s all I did! That´s all I do, is sleep, throw up and hallucinate.
During one period he took a lot of Valium, until he almost overdosed, trying to stay doped. He was in a lot of pain.
It was Gery who gave him the injections – I think Keith was referring to the Interferon here – and after three hours Keith would get a lot of headache.
- There were times when I´d wake up crying, or couldn´t move, because my head would be so sore. And you know I still suffer severe headaches. The headaches are back to the point where they almost make me cry a lot of times, like they used to. I get headaches every day. I wake up with headaches, and I go to bed with headaches, every day.
It was so bad that he could not talk to Gery. He couldn´t even stand being touched by him, because of the pain. And he hated being on drugs. The couple had been on IV drugs before, but had quit four years ago.
And here starts Keith´story.
Keith was 29 years old when we met. He was from Dallas, Texas, and had lived in San Francisco for 9 years.
He came out as gay when he was 17 years old.
- In Dallas?
- I came out pretty much in my junior years in high school, and kind of just took my life from then on, (I wondered if he knew what he said there) because my father passed away when I was sixteen.
Both his parents had been alcoholics, but Keith´s father had stopped drinking after having had a heart attack. Keith was closer to his father than to his mother, and when his father died, he just freaked out.
- He died right in front of me… I couldn´t believe it, cause my dad had stopped drinking for four years, and never… We had the best relationship. And then one day I handed him a glass of orange juice, and his eyes rolled back in his head, and he held his chest, and that was that.
Keith had already started doing drugs at that time, amphetamines, and had been up for three days when it happened. When they were brought this father´s watch and were told he did not make it, Keith said he freaked out, and from that day on he was his own boss, and he eventually left home with two other friends.
He made his way to San Francisco, because of the gay life there, and he made a lot of money, and he was very popular.
- I lived a pretty active life from the time I got here, until I met Gery. You know it was bars every night, IV druguse, heavy duty druguse, heroin, crystals, cocaine, Demorol – any narcotics we could find, we would do it.It was never abnormal for 20 of us to be in a room and one syringe, and we cleaned it out – what we thought was cleaning it out, we thought a little bit of clean water would take it out, and pass it on.
In the end Keith and Gery had to make a decision, either keep doing drugs and split up, or stop doing drugs and stay together. They chose the latter.
- So we locked our self up in a room for about four days, almost killed each other. (Keith laughed a little.) But it was coming down off all the drugs. We didn´t go through any professional rehabilitation, we felt that if we want to do it bad enough, we can do it on our own, and we did. We did.
Even so, they separated for a while, but then Keith went back to Gery and all was well for about a year and a half, until Keith took ill.
- I started just feeling bad, fatigued and everything. Then I came down with Hepatitis B from IV drug use, and just got really sick.
Keith described a lot of symptoms he had that would today be associated with HIV/AIDS, but at the time no one knew what was going on. The term ARC was used then; AIDS-related complex.
- And they were just: God! What is going on! What is wrong with you? So they removed a lymph node out of my neck, and I wouldn´t heal. Then I woke up one morning and I had all these purple spots all over me, and what had started happening was that all my blood vessels had started hemorrhaging – I had nothing clotting my blood. I was the eleventh gay man in the US to have been diagnosed with this disease called ITP (Immune Thrombocy Purpura). Anyway, so they had to remove my spleen in order for my blood to clod.
- Was AIDS known then?
- It was just coming out, this was in 1982, and the first case had been seen in 79 or 80, and then in 1981 they defined it as Acquired Immune Deficiency Symptom. But I was ARC for a long time, 1982-85.
Keith showed me incredibly large lymph nodes behind his ears. He had continued to be diagnosed with cancer, and went on chemotherapy for 9 months. He had a number of other problems, like shingles/Herpes Zoster. But it was lymphoma that gave him the AIDS diagnosis.
Many things happened to Keith during the chemotherapy, one of his lungs collapsed but then they took tests, and everything looked fine, so they wanted to close his case.
- Forty eight hours later I was so sick that I didn´t know where I was at. I had Spinal Meningitis and for days I didn´t know nothing. I had 104 temperature for four days, so they called Gery to start getting everything in order, because they didn´t think I was going to make it.
Gery joined us and said that Keith did not start responding to treatment until the eleventh day.
- So for the whole ten days they didn´t know if he would live or die. I had to go and see a shrink.
- Gery lost 30 pounds in a matter of 8 weeks, over just the stress.
Keith couldn´t believe he had AIDS, although, as he said, he had done everything imaginable in what they considered high risk to get it, but still, he could not believe it.
The first encounter with HIV/AIDS that the couple had was with a friend who was very sick, Richard,
- We moved a friend in. Nobody else would take care of him. The support systems were just starting to build up here in the city, and the day he told me had AIDS, was the day… He more or less died that day, he did not want to live.
Keith said they had all this will power and they tried to make him eat.
- He had Cryptococcal meningitis, it attacks the brain immediately, and the drug they use is so bad for the system, it eats up your kidney and your liver.
Gery was the only that could touch Richard, especially since Keith had been diagnosed with ARC at the time. As an old drug addict, Gery could handle injections.
Richard didn´t want any outside help, like a counselor, and he did not want to apply for Social Security. Keith and Gery were totally concentrating on him, and not on them selves.
But Richard was changing. He wrote to his mother that he was locked in, and starved by Keith and Gery. And they were shocked, because they did everything for him, and felt they had to prove that they had not starved him, nor locked him in, to the people that believed what Richard had said.
- But his brain was out, wasn´t it?
- His brain was gone, and we didn´t realize that the meningitis was eating his brain the way it was.
Richard eventually moved in with a priest he had fallen in love with, and he died three months later, blind and with Tuberculosis.
- He didn´t even know who he was, or where he was. He was so sick!
They actually didn´t know Richard very well, but his best friends never helped. They had offered, but none of them came when asked. Even Keith and Gery´s friends quit coming over.
- After Richard left there was a lot of stress gone, which was good, but just the stress of me having ARC and everything.
It seemed like Keith was doing well when we met, but he could not get AZT, and it made him angry.
- My doctor thinks I´m benefiting real well from the chemotherapy and the Interferon that I went under, and he´s real angry because they wont use it any more. The Interferon is supposed to build up your immune system, and that´s what he thinks he´s done with mine. But there´s just so many different things going on with me… that they don´t want to. It´s really hard to sit back and accept that these men on this panel at this pharmaceutical company sit there and play God and say: ”He should get AZT, and he shouldn´t!” What makes me angry, is that they don´t even know me. They don´t know what I deal with every day, or how I feel.
Gery´s health had been good until 6 months before, when the started feeling bad. And he was put on AZT. Keith was upset why he didn´t get it as well. Gery called from another room: ”So was I!”
- I´m sorry.
I was wondering about work. Keith had been working until August 1986.
- I worked a couple of months under chemotherapy, but the chemotherapy got SO bad that I couldn´t function. I would be up all night throwing up, and I tried to get up and go to work the next morning, and it just… when it got to the point where I couldn´t run a copy machine, I thought… (Keith laughed a little.)
Going to work was very important to Keith, because for so long he had not worked – he´d been up all night doing drugs – so this stable part of his life, getting up every morning and go to work was important. But he lost it, and he now had 580 dollars a month to live on.
- If I didn´t have my lover, I would have to go in to a residence program, I would have to go to a food bank, I´d have to go to a clothing deposit. Gery makes good money, and he makes sure that we always got food, and he takes me out…
Keith had worked with a law firm, with ”a little bit of everything”. He never got a specific education, but he went to a school and got himself a General Education Diploma, and then he was on his way to San Francisco.
I wondered how he supported him self while on drugs, and he said he was afraid I was going to ask about that, and I said he didn´t have to answer that, but he said it was ok.
- I was a… I hustled, I worked the streets for about two and half years.
- Drugs and sex, that´s very common.
- Oh yeah, definitely.
Keith talked about a special drug that they were hooked on, one that makes you very sexual.
- No matter what is going on in your life, the drugs make you very promiscuous. Especially the drug that we were doing, I mean that makes you wanna go out all night long and have sex with anything on two legs. That´s how powerful that drug was.
But a lot was changed because of HIV/AIDS.
- Five years ago you could walk down Castro Street at 5 am, and there would be a lot of men looking for other men, but now you could walk down Castro at 8 pm and it is dead.
There used to be so many bathhouses in the city. They are all closed. They closed the last one about a year ago, and it was because they were practicing unsafe sex there, you know.
But the drugs do pacify a lot of times, when you´re a homosexual, and then, you know, so many kid´s parents were alcoholics and stuff like that.
Keith said that he never turned to alcohol because he turned to drugs.
- There was nothing better to me than staying up for five och six days at the time without any sleep, and I thought: This is Heaven. This is it!
I wondered if he thought drugs helped people maybe coming from a religious background, to block that out.
- I think it helps you open up. You can be more forward or more aggressive with people a lot of times, when you are on drugs and stuff. There is an awfully high rate of alcoholism and drug abuse in the gay community, but you got to think about this – we have no children, we pretty much support ourselves individually, a lot of gay´s make a lot of good money, you know. It was just something to do (and here I think Keith referred to pre-hiv-times), and there wasn´t a lot of things going on with diseases and stuff that were affecting the community.
- Do you think you would have done the same, would have had the same sexual activity if you had not been on drugs?
- I would probably have been very promiscuous anyway, cause I was experimenting, and for a long time dated girls during the day, and went with guys at night.
For a while Keith and his sister would date the same guy. When she dumped someone, Keith would pick him up. I wondered if she had been tested, but no, she was heterosexual, she didn´t think HIV/AIDS had anything to with her. Keith had once sent her information about HIV and condoms, but was really told off by their mother: He should never do that again! Did she rather see her daughter DIE? wondered Keith.
Keith´s mother was an alcoholic, and had come to them on a terrible visit, but the second time she came, she was OK, and also informed about HIV/AIDS, and very supportive.
- We were like just in shock!
She didn´t think she could handle it if Keith got sick, but if Gery was ill, she would come and take care of him. Gery´s family did not speak to him, because he was gay, but Keith´s mother loved him. Had adopted him, said Keith.
- She means more to him than his own mother.
I was wondering how people reacted when AIDS came.
- Did people believe it, that it was actually happening, that it was dangerous?
- No, we didn´t think it was that dangerous. We thought some people were just having bad luck, and that they had just worn themselves down so much that they had no immune system. We made up a lot of excuses.
When Keith and Gery took care of Richard they had visited the AIDS Ward 5 B at San Francisco General Hospital.
- Well, four years ago, when we went there it was just like… There were so many young people dying and on respirators, and we wanted to collapse because it was… It tore our hearts out of our chests, it just grabbed a hold of us, and we saw all these young kids that couldn´t breath… being shunned from families. And I just thought: My God. This is serious. This is really serious.
Keith talked about how he tried to talk to people about Safe sex, about how to protect one self and the other person.
Then he suddenly started talking about what had happened when he and Gery decided to change their lives, and stop doing drugs. They ran a small hotel in the Tenderloin, and prostitutes would bring in their customers, sometimes 10-15 per night, and they paid 10 dollars for each customer, or trick.
- We were making bucks! – and they always used condoms, always used condoms.
Keith and Gery were still using while they had the hotel, and they had just been shooting up when a man was murdered by one of the women´s pimps. They tried to save him, but the towels Keith used were just soaked in blood – he had been slashed 21 times and died the next day. While this was going on, Keith said it was unreal.
- I was just like… This is not happening! This is NOT happening! I mean these are things you read about, these are things you see in the movies, you know, and it was right under our nose, you know.
Something else happened. Gery had told Keith that a man would come in with a pistol, a 38. Keith was not to touch it but to hold out a towel for him to put it in, and he did that and Keith put it in under the counter. Two hours later that man was shot in the face in a bar next door.
When all that had happened they felt they had to change.
- Right there we said, if we didn´t stop, this was gonna happen to us. We were dealing with whores, we were dealing with pimps, we were dealing with guns.
They found an apartment, still in Tenderloin, but it took some turns before they moved together, and they had been together since then. It was not easy with all that was going on in their lives, but the most important thing was to be together. When I asked how it was possible for them to stay together in these surroundings, they both answered love.
- A real strong love, said Gery.
They did get high at times, but it was nothing but trouble, said Keith. He described what happened to them.
- When we would get high, Gery and I were completely incomplete. Everything was in the opposite. I mean, I wanted to go out, as soon as I did a hit, a go, all I wanted to do was to have sex. Gery was content in the hotel. Like when we stayed in our room, Gery would be at one end of the room, and I would be at the other, with our backs turned at each other. We had nothing in common when we´d get high, and that just lead to trouble. But it´s gotten much better, we smoke our pot, that´s the only thing we do.
A lot of people consider it a drug, and it is a drug, but considering what we used to… You know I feel have the… I love to smoke marijuana, and that´s just one of my rights that I exercise. People say it it tears your immune system down. What immune system?! I don´t have an immune system. What the hell are you talking about!
Gery added that if they did not smoke marijuana they would probably never eat, because they had both lost their appetite.
So what did it feel like, to be sick, now that they had finished doing drugs?
Keith : I look back at the things that we´ve done that were real stupid, but they were really justifiable at the time. There´s nothing I can do about the past.
Gery: We never sat down and try to put the blame… on why we got the disease. It could have been the IV drug use, it could have been just the wrong person we went to bed with… We´re really happy about our lives now, other than the fact that we are both sick. As far as saying, you know… we went through all this, that shit, only to end up sick – we don´t do that.
Gery looked away on one of the dogs when he said that. But Keith didn´t agree with him.
Keith: I mean we DID sit back and say; Well, it´s not fair. Look we stopped doing drugs 3-4 years ago, at the time when all this started to happen, and look where it has gotten us!
Gery: Nowhere! But that´s just something I think you deal with, you do. We don´t deal with what we have done in our lives.
Keith: We had a good time when we were high and did drugs. That´s over with now. Gery and I are just about as married as any other heterosexual couple could be married. Heterosexual, homosexual, look around you.
Keith gestured towards their home.
Keith: I mean, it is so typical, everything we got, for a married couple, you know.
Gery: And we don´t drink, we don´t go to bars.
Pia: You don´t date outside of the marriage?
Both: No no no!
Gery; It´s come home every night, eat supper and watch TV, and take care of the children.
Here the couple talked about Gery´s SHANTI volunteer, Sarah, about all the good things she had done.
Keith: She´s been with Gery for two years, which is real unusual, cause the burn-out-rate is so high.
Keith was on his third. One had gone off to school, the second one was a lesbian woman, that he had totally opened up to – Emotional support volunteers are mainly there to listen – but she never came back, and he was really disappointed.
- And I just thought: That´s it! I´ll never open my self up to anyone again. I don´t need anybody´s help. I don´t need SHANTI.
Keith said he really hated SHANTI at the time, although he knew it was not SHANTI´s fault, but because the Emotional support counselors/volunteers were there to listen, not to judge.
- They are so non-judgemental, which is so important, because you don´t have to be afraid of what you can say, or what you can do, and tell them.
Here we were interrupted by Sarah who came to visit.
We all said hello, and she went with Keith to the kitchen, while Gery and I went in to speak in another room.
Here starts Gery´s story.
Gery was 37 years old at the time.
He was originally from Iowa, but had moved to Houston, before he came to San Francisco.
He used to be a bartender, but was now an accountant.
- I work for the Opera.
- That´s nice.
- Yeah, it is, it´s real interesting.
When we spoke he had been diagnosed as having ARC, and been put on AZT.
- At first it was just a weight loss, and then I started getting the night sweats and fatigue, then I got trush, a bad case of trush.
There were also problems with his blood and the doctor decided he would try to get Gery on the AZT-program.
- I´ve been on AZT almost a month now.
- What does it do to you?
- Nothing yet, except for nausea all the time. But it takes a long time for it´s effects to begin. AZT is supposed to suppress the AIDS-virus from doing any more harm then it has already done.
Gery´s father had died in January that year, and he didn´t know Gery was sick, but his mother knew but had not responded at all.
- But HIS mother is wonderful! She´s kind of adopted me, I´m also her son. So when ever she calls, we talk too.
Gery´s contact with his mother was not at all like that. When he told her she was sick, she asked him to send some information, and so he did, but he had not heard from her since.
She was also supposed to see his sister who worked in San Francisco at the time, and he asked if they could meet for lunch or something, since she would be in town for a week, but he never heard from her. He did not understand why she acted that way.
- Is that painful for you?
- … It causes a lot of anger. I guess I am angry because she is that kind of person, that she can´t accept it and be loving, cause I´ve always assumed that a mother accepts anything. And if it were cancer, I´m sure it would be different for her, or if it was Tuberculosis or something that I was dying from. If I´d been in a car accident it would be different for her, but… she just can´t accept it, and I don´t know why. I have a lot of anger about it, but I just try not to think about that much, that´s all.
As mentioned before, Gery had a SHANTI-counselor, and I wondered what it was like for him.
- It´s wonderful… I started seeing Sarah two years ago, when we were taking care of Richard here in the house. She saw me through all that anger we had over that.
After the Richard-experience Gery only wanted to close him self to anything that had to do with AIDS.
- Didn´t want to hear anymore about it, I didn´t want to help anybody, I just didn´t. That was it!
- Because of the way he treated you?
- Because of the bad experience we had – him telling people that we were starving him and freezing him to death. It was just real bitter.
Sarah also helped him when Keith was diagnosed, in what Gery called a nightmare; fighting with doctor´s, illnesses, hospitalizations and his own fears… of being able to deal with AIDS in the future.
- Without Sarah there, I don´t know if I´d be here right now. There was a time when I was going through some real suicidal tendencies, right when my father died and Keith was real sick, and I just couldn´t understand why I had to keep giving up things, knowing that in the end it was just going to be for nothing.
Gery was going to lose what was most important to him, and that was Keith, so why go through all this torment.
But Sarah helped him, through anger and depression and periods of grief. She came to the hospital every day, and she would bring them little” care packages”, as Gery called them, with food.
Gery could talk to her about things he could not share with Keith, it could be guilt; like why Keith and not him, and fear for the future.
- I had a fear of being left behind, and if Keith´s gonna die, I wanna die too. Why do I want to stay here?
Gery felt he could not talk with Keith about that, he had to be strong for him.
- So I use Sarah for all my weaknesses, (he laughed a little) and my tears, my anger and rage. And… it made an immense difference.
Gery talked about life being a roller coaster, and that the highs and lows were really high when it came to AIDS – that you never knew, from one minute to the next, what was going to happen. A lot was going on with Keith, he had recently seen a neurologist because he was shaking constantly, and he was disoriented and forgetful, and the doctor said he had anxiety attacks, which was sort of a relief, because they could cope with that. But now Keith´s lymph nodes were swelling, and was that dangerous? He could share the thoughts with Sarah.
Everything seemed to be in remission because of the Interferon-treatment, and he doctor´s thought Keith would be OK for the next three years because of the Interferon. But they wanted him to go back on chemo therapy, but he refused
- What does that mean, when he refuses?
- It mean that… he´d rather die than… to have to go back through that suffering.
- Does that mean less than the three years?
- No, it probably doesn´t, unless… Who knows? They don´t know. Everything is a guessing game. He´ll probably be… somewhat healthy for the next three years.
Gery said that Keith had been ”a little tower if strength through the whole thing”.
- I don´t think I could have fought as hard as he´s fought, if I get sick, which I hope I don´t.
At the Opera, and they knew the situation, and they were very supportive. Several employees had died of AIDS, and they had had seminars, ”AIDS in the workplace- seminars.”
We talked about money, about medical bills. They both had insurances through their workplaces, but it did not cover everything.
- You are very lucky that you have one another.
- Yes we are very happy with each other, and that we have each other.
I wondered if they had discussed what would happen if one of them would die. And they had, it was everything from funeral arrangements to who would take care of the animals. The only thing they had not done yet was writing their wills, which they would do very soon.
- Yeah, we have discussed in such depths and finality that we don´t think about dying anymore. We concentrate on living now, and try to do things that we enjoy doing.
Doctor Elisabeth Kübler-Ross talked about 5 stages of grief: Denial, Anger, Bargaining, Depression, Acceptance, and I wondered where they were at.
- Keith´s gone through the classic rounds, you know; denial, anger, the whole thing. I don´t know, I think I´m still in denial.
Gery did not only have HIV, he also had Pulmonary Fibrosis. Some of the dope he had been shooting up had been mixed with Talcum powder, and it ended up in his lungs.
- The Talcum powder crystalizes, and over the years it is constantly lacerating the walls of my lungs, and it heals up with scar tissue. So my lungs are slowly filling up with scar tissue.
The doctor´s had said he would have to have an oxygen tank in a few years, in order to breath, because the capacity of his lungs would be so small that he could not do it himself.
- So you know, (he laughed), one or the other is gonna get me. It´s kind of a game: Let´s see which!
Gery was angry at what the disease did to people, and what it did to Keith. He had seen him and other´s suffer,
- Have you lost a lot of friends?
- Yeah, we have lost a lot of friends, a lot of acquaintances, a lot of people that we know through other people… Yeah, it has really taken a toll on this community, and it is not slowing down at all. Not at all. 119 diagnosed cases last month, you know.
For a while Gery went to a SHANTI support group, and found it very beneficial. But after 6 months, he started to feel the effects of the virus, and it became harder and harder to go to the group meetings. He rather stayed at home.
- Did it make you more, painfully aware of your sickness.
- It´s real funny, because there could be nights when I´d walk out of the group meeting, and just go: ”I can´t take it anymore, I don´t want to hear another word about it!” But there were other nights when it would be just so fulfilling, and so relieving to realize that you weren´t the only one feeling these feelings. And this anger, this rage, that it was everywhere, that it kind of made you feel better about it. ” Oh well, I guess I am reacting the same way everybody else is.” So you didn´t feel so isolated, so it just depended…
But there were times when Gery didn´t want to hear about it, nor read about it, he just wanted to escape from it.
- But you can´t, you know. There´s no escaping it. We could move to to the furthest spot, the most isolated spot in the world, and we ´d still have it, right there with us. Cause we´ve got it, we´re living it. There is no escaping it for us.
When Keith and Gery took the test, they didn´t think they were in danger, they denied the fact that they could have been exposed. They had cleaned up their act, and they thought they had caught them selves in time.
- But little did we know, that the incubation period could be 8 years… Who could have guessed.
Keith and Gery had had a lot of friends, but some they had weeded out, as they found them to be Fair Weather-friends. They now had about 12 friends, that would be there for them, ”at any given time”, as Gery said, and help them, if Keith got sick, or it was something with the cats and dogs.
- We have a lot of really good friends that are very supportive of us… I consider that very lucky, that we have that.
I asked again about Gery´s mother. He really would have liked to see her when she was in San Francisco. Didn´t she understand that they had to talk? Couldn´t he make her understand? But Gery did not think she understood.
- That´s what I asked her, cause I said, ”You may not get a chance to spend anymore afternoons with me. THIS may be our last chance to sit down and share something with each other…” But I guess that´s too hard for her to face.
Gery felt very angry about it, and he wanted to confront her, but he had just resigned him self to the fact that she had so many problems with him being gay, and that he was sick, that she would not be able to overcome them,
- Nothing I can say will make her change her mind. So, that´s the way it is, and that´s the way it´s gonna be. You know, I imagine she´ll have a lot of guilt once I´m gone, because she didn´t respond to me, but that´s something she´s gonna have to live with, not me.
So what were their plans now?
- Just to live everyday to its fullest, and get as much happiness out of it as we can, that´s our only plan… That´s our only plan. Each day is important, just to be happy.
- Has your life become more concentrated since this happened to you?
- Yeah, we no longer do things for people that we don´t feel we have to. We don´t waste our times on things we don´t enjoy, that we don´t both fully enjoy.
They had done a lot of things to make their daily life much more easy to bear, and they concentrated on the quality of their lives much more now, than they had done before.
Gery wanted to continue work full time, as long as he could, but there were times when he was so tired when he woke up, that he could easily have stayed in bed, but he did not want to get to that point, so that motivated him, and they needed the money. Keith was not working but was taking care of their home, and Gery said it worked out great.
- Yeah, Keith is at home, and he´s become a very good house keeper, very good cook. I love having him at home.
Keith came in, and I wondered what he would say to someone that had AIDS in Sweden He immediately started talking about setting up support services, because it would be so important for People with AIDS, to have someone to talk to, like a volunteer, someone non-judgemental who would just listen. It could save them, he said, because they are so shunned.
- If one person can give a person with AIDS an hour, two, three hours a week of their time, they´ll realize them selves how important that is. That´s why I think so many people here are living with the disease, because of the support we have.
A lot of people with HIV/AIDS moved to San Francisco because of the support services, they had nowhere else to go. It could save them, Keith said, because they were so shunned.
- Two or three hours a week is all that is required by most people.
- In caring?
- In caring, just showing a little bit of caring and hope and love. Emotional support is very important. I think that´s the first program that people should focus in on, that have no programs, because that´s what they need. A lot of families will turn you away, and when your family turns you away… A lot of times there´s nothing left. But when that person comes in to your life for you to talk to, they can be the most important thing in your life. So support, I think, is most important.
Keith then told me about anxiety attacks he got, things that he thought he had suppressed, combined with all the mostly negative information out there. He had a counselor that he spoke to every week and that helped him a lot, because it just overwhelmed him.
- That´s my way of cleansing my self, to tell her what is bothering me, or what I see out there that is hurting me.
Out of everything that was going on, I wondered what was most scary to him.
- Is it your disease, or your death, maybe…?
- My worst fear is being left alone…
Here Keith became very moved.
- It scares me to death, and I… sometimes have a real strong sense of that I may lose him first, I mean… Cause he´s everything to me, everything, and… I´ve had dreams, lots of dreams that I never tell him about… You know, I see the things that he´s going through now, that I went through four years ago, with ARC, and all the side effects from medicines and stuff. I´ve just seen too many people like him, as strong as he, you know… go, and just: That´s it!
But my worst fear is being left alone. He supports me a lot, emotionally and physically, every way, but losing him, is my worst fear.
- What would you do?
- I don´t know what I´d do, I really don´t.
- His worst fear is losing you.
Keith looked really surprised and laughed a little.
Keith had planned everything that had to do with his death, he was to be cremated and he wanted to talk at the end, at the Memorial. He also had cassette tapes ready to be sent out, and some letters.
- I am a member of the Hemlock Society.
- What´s that?
- They believe in self deliverance, euthanasia, suicide, and I just don´t want to ever be put on any machines, and when I feel there´s nothing else that can be done, that´s when I will… do what I have to do, in order to pass on, you know..
Keith again talked about his fear of loosing Gery. He had seen so many, as strong as Gery, suddenly get sick and die.
- And I´ve seen a lot of people that are real weak, like I am, go through so much and hold on, and… I couldn´t imagine… being with anyone else. I mean… He´s really good, physically, mentally, sexually. We have… it´s kind of a healing process I think for both of us when we feel overwhelmed… with all the bad news, and there´s a lot of times when we just hold each other, you know, and cry together.
- It is a unique situation. What you have together is rare.
- It is very rare, we don´t hardly know anyone… that has stayed together and gone through what we´ve gone through, so our relationship is very valuable.
I asked a little about his religious background, and he was brought up in a Catholic family, but not practicing Catholics.
Keith had tried a little bit of everything when it came to religion.
- I chanted for a while. I got in to Buddhism for a while, and I got tired of them telling me that if you chanted 3 – 4 hours a day you´d get rid of AIDS.
I, Pia-Kristina, had met a friend in New York who was really involved with chanting and helping other´s, to the point where she lost her own self.
- I used to have ten-twelve people here sometimes at night.
Keith showed how they all chanted in front of his Gohanza, while Gery was in the next room and almost ”died”, while it that was going on with incense and all.
Keith was told to chant morning and night, and said he was on ”such a guilt trip” when he wouldn´t do it at six o´clock in the morning, before he went to work.
- But then, after I got to the hospital it was ok to chant once a day. I thought: ”Leave me alone.” I didn´t believe in this anymore.
- You still have your Gohanza?
- Yeah, I still have my Gohanza and scroll. (He whispered: It´s in the closet!) I tried a few things. I believe in crystals, healing crystals, like I carry crystals around with me, and that´s enough for me.
- And you believe in Gery.
As we left the room Keith thanked me for making him feel ”so comfortable”. He told me that most of the people that came to interview them were very demanding, they wanted tears and close-ups on grief, so that both Keith and Gery felt tired and used afterwards. So what he said felt good.
And then I got to meet Sarah Finnegan, Gery´s counselor.
- He was my first client. We were matched together in July of – 85. I met Keith the second or third time Gery and I were together, and right away there was just a real… We had just the right chemistry the three of us.
Ordinarily a volunteer spend a few hours with the client each week, but this relationship turned in to something else, much more personal. Sarah was allowed to talk to me about Gery and Keith.
- We spend a lot of time together, not just SHANTI-counselor time, but social time. We like to sit around and eat, watch television, go for walks. They come over for dinner, they know my children, and we´re all family together. And so … we´ve gotten to know each other pretty well. It´s a pretty intimate relationship, that Gery and I have.
- He said some very good things about it.
- It´s a very close relationship, sometimes it´s a bit complicated because there´s the work I do as SHANTI-counselor, and I try to be very clear that I wanna be there for him in an unconditional way, in an un-judgemental way, and just… be there as a witness. And then there is also the part of me that is his friend, that kids around with him, and we joke and laugh and tease each other, and sometimes I have to remember that I am his counselor, when I am with him, and other times I´m just his friend.
We talked some more about Gery, what it would be like to lose him. And she said that she did not want to think about it. It was like a wall that came down for her. But she wanted what was right for him.
- I love Gery, and I want what is right for him, and so… If he chooses to end his own life, which is something he and Keith have talked about… I kind of feel… I went through this once with someone, and it was very painful, but that´s what that person chose, and that´s what that person needed to do. Whatever they do, however it ends…
She would not have had Gery and Keith in her life, had she not volunteered, and she talked about their relationship as a treasure. She would grieve, that they could not be together anymore.
- But for Gery I won´t grieve, because he will be in a place that will feel good for him. I think we talked about it – for Gery death is a release. It´s a way of going on, it´s a way of going beyond what´s here…
Sarah tried to focus on what was going on that day for Gery, and whatever it was that was real for him.
- He has this tremendous sadness in his eyes.
- He is in a lot of pain, he has had this enormous pain in his life, but you see the other side of it is that he loves someone, and he is loved by someone, and when you have that in your life… I mean, I think that for him, that´s just real important, and real special to be able to love someone completely, and know that the other person loves you back….It´s kind of one of those things that make life complete. And we talked about that, and I think that there are also some great pleasures for him; taking care of the plants and loving the dogs, have their babies, and we have dinner together and we´re silly, I mean, that´s life!
Sarah talked about the ”SHANTI-experience”, that it is really special, and she referred to a man who had talked about it being a privilige, and that was how she looked upon it too.
- I mean, I do feel that you couldn´t pay me enough money to do this work, I mean no matter how much you paid me, it would seem like it was a privilege to do it, and so to do it for free, and to be able to kind of do it from the heart.
There was suddenly a beep, and Sarah called out to Gery – It was time for him to take his AZT.
I was late for my next interview with Irene Smith, so we said goodbye, and Sarah drove me there.
I asked how come she had gotten involved with SHANTI, and it had started while she was going through a long grieving process. She told me I could interview her, and she would ask her other client, Larry, if I could talk to him.
This is the end of the Keith, Gery and Sarah-part, for now. We stayed in touch and I will return to them.
We met again in 1988, and there were letters and mails exchanged.