Jay and Keith

Keith was the man I had met at San Francisco General Hospital during the press conference for the AIDS Commission.
We met for lunch at a Swedish restaurant.

Keith talked politics with me, local politics that I was not familiar with. He was a bit frightening with his sarcastic and bitter sense of humor.

  • We vote them out of office!

Keith took me to his home, to meet his partner Jay. They lived in a small house, overlooking San Francisco.

Jay spent most of his time at bed, but he got up when I came. He was wearing a pyjamas and a dressing gown, and sat in the sofa during the interview. Beside him was a photo from before HIV. A really good looking athletic man.
He was rather thin, his skin had a yellow tone and his eyes were dim/faint.

Talking was difficult for him, he was panting and spoke almost like in stacccato, with small ah:s in between, like small stations of pain.  Sometimes he forgot a word in a sentence.

Jay was an accountant, 36 years old.  He came from Mount Vernon, Washington, and had moved to San Francisco ten years ago.

  • How come San Francisco?
  • It was the most… beautiful place I´ve ever been to, and I loved it. I really wanted to live in LA. When I saw Los Angeles … ah… I came hurrying back to San Francisco. So… I just happened to come here, found a lover… and that was it.
  • Did you come out at home?
  • Ah… I… came out… ah, away from home… but… since then… my parents have been aware… that I´m gay, and… they accept it totally.
  • Do they know you are sick?
  • Oh yeah! … ah… My mother… has come out… twice, ah…and ah… I´ve gone back there… three times… and, my whole family, ah, accept it totally…and will do anything for me, and are not scared of the disease, will kiss me or hug me.

One of Jay´s brothers has two children, and he did not mind if Jay touched them and hugged them.

  • So that´s what… type of family I´ve got… I´m very proud of them, and they accept… Keith as my… lover… ah, have no… ah qualms about that either, so that´s … quite… ah… ah… Quite proud of them.

When HIV came they were pretty sure that it would not affect them. They had been together for 3 years, and Jay didn´t think he would get it.

  • I pretty much assumed I wasn´t gonna get it… cause… I certainly… wasn´t… ah, you know… going out or anything, so… I felt we were pretty safe.

This was when it was announced that the actor Rock Hudson had AIDS, July 25th, 1985.

  • The very next week that Rock… Hudson got it, I got it… ah, and it came as a… shock, and… ah…ah… And the doctor who diagnosed me, said I had six to nine months to live. And he told me that over the phone, and I thought ah… This is it. (Jay laughed a little.)

I asked about the doctor and Jay said it was his temporary doctor. He had originally gone to see the doctor for other medical problems, like having problems with climbing up stairs, and he wondered what was happening.

  • And I… I… ah, and I also had problem… going up the hill in the Castro, and I didn´t know what was going on, and…

When the doctor heard about the problems, Jay was immediately sent to a hospital and they took x-rays, and Jay was told he had pneumonia. A few days later a bronchoscopy was made, and it was confirmed he had Pneumocystis Pneumonia (PCP).

  • Next thing I knew I was on drugs… ah … very toxic and hard to take, but I… weathered it out here… at home… ah… I was sick for two weeks, and another two weeks tired.

Jay actually went back to work, for a whole year.

I wondered how he felt when he got the diagnosis.

  • Oh well, I took it pretty good, I took it like ah… ah… Well it happened! You know… ah… it was all around, and ah… ah… I just figured Oh Boy! That´s bad luck… ah… ah… I took it pretty good… actually… ah… ah… I wasn´t angry, I wasn´t hostile, ah… I just accepted it… I thought I wasn´t gonna live very long… ah… I got it, so there´s nothing I can do about it.

For a while Jay went in to seclution, he didn´t want to see anybody, and stayed at home. He didn´t have a large group of friends to begin with, because he worked a lot and his free time he wanted to spend with Keith. He had recently started to reach out though.

I wondered if he had lost friends because he has Aids, or had they come closer?

  • Ah… actually… I would say, everybody has come closer… ah… I´ve been shocked at the support of the people. (He laughed a little.) Ah… everybody… my lover, my family, my best friend… all these people I came in contact with.

After Jay stopped working he got in to politics, and became an AIDS-activist.

  • I haven´t encountered too much… AIDS-phobia, at all. Nobody I know is afraid to touch me or hug me or kiss me… of the people I come in contact with… friends, so… It´s (a) pretty strong group of friends I have… and they do a lot for me.

And here I turned to Keith, what was his reaction to all of this?

  • To Jay´s diagnosis?… I was exceptionally angry, and… still am. I guess anger is the one word that could express my reaction… And I see Jay´s illness as… a representative of… of what´s happening to a whole generation of gay men. They´re being killed off by a… form of genocide, and it makes me very angry, and it certainly heightened my anger, when the most important person in the world to me… was diagnosed.

We talked about the HIV-virus, how it was spread during an incubation period of up to ten years, while people were going about their daily life, not realizing that the virus was slowly but surely spreading through their community.

We talked about churches, especially the Catholic Church saying that gay people are ”Intrinsically Evil”, or ”Intrinsically Disordered”, and making a difference between innocent and guilty victims, where children carrying the virus are innocent and gay people are guilty.

  • They are saying that someone like Jay is guilty of something, and therefore he deserves this sentence placed upon him, by this virus. And I think there is an awful lot of people, in a lot of positions of power in this world, who have that view, who feels this is some kind of punishment that gay people deserve. And I think it has definitely colored the respons… that we´ve gotten from society and from government, and from people in general, and … that definitely includes the church.

Keith talked about fundamentalist religious groups that would advocate stoning and death to Gay people.

  • If you believe those kinds of thoughts, and if you also believe that illness comes from some great power named God, you would obviously logically put it together and say that this God has decided to bring his wrath on specific people for their behavior. That´s bull! (Keith laughed a short bitter laugh.)

Jay was brought up as Catholic, but it was agony to go every Sunday, so when he was given the opportunity to leave, he did, when he was about 11 years old.

  • Oh, religion is pretty far removed from… my… mind… I rarely think of it… except when the Catholic Church, the Pope comes out with statements (hard to hear) homosexuality is Intrinsically evil, then… I start to think that this Roman Catholic Church… doesn´ t have its act together yet, and… That´s the extent… ah… ah…

Jay thought religion was good for meditating, and as long as it did some good for people, it was fine, but…

  • If it… spreads… bigotry or guilt trips and all that kind of stuff… then it´s wrong, so… I´m not too proud of … the religions in America, ah…

I wondered about the doctor that gave Jay his diagnosis over the phone.

  • Is that the way they usually treat people here? They just give you a sentence, and that´s it, and then just leave you?
  • Ah… ah… as it happened, this doctor… he had AIDS at the time, and died of AIDS a year ago… I didn´t know that… ah… I found out later.

Keith came with a vitamine drink for Jay. It was 260 calories. He did not have an appetite, and needed to drink it to regain his weight.  He was down at 125 now, about 56 kilos.

  • I´ve gone through a rather difficult period right now… and I hope I can get back on the AZT and… go zooming off again.

Jay suddenly started talking very loud.

  • Oh! I used to be able to walk around and… ah… you know… ah, walking, going out and protest, and… Now I have a very hard time even walking from here to the bedroom.

Keith took over.

  • Jay and I have done an awful lot since his diagnosis… and his energy level has definitely decreased. I mean he and I have traveled an awful lot since his diagnosis. We´ve been arrested together at demonstrations, we´ve gone on trial, we´ve done an awful lot.

Keith and Jay had been demonstrating since, and wanted to continue doing it.

  • Both Jay and I have been radicalized politically by this epidemic. We´ve both seen how the American government is more or less not caring of people. It´s mean spirited… it humiliates you, it does not want to take care of its own. It rather creates bombs to kill people, then to take care of the sick, and… We´ve both learned on a very personal basis how offensive our government is to us, and how negligent it has been with this epidemic, and it´s taken us and molded us in to two, what many people would identify as radicals. (Keith laughed.)
  • What was your life like before then?
  • Oh, I would say we were pretty quiet, complacent, apathetic people.
  • We lived ah… ah very comfortable like.

Jay had worked a lot, and was often away from home, so he really treasured the time he and Keith had together. They had lead a very comfortable life, ”not a care in the world”. There had been problems in the relationship, but when he got AIDS it just solidified the relationship.

  • I was in love with Keith, but… nowhere near the kind of love I am (feeling) now. It´s much deeper, and I think it goes along with jeopardy. The longer you´re with somebody that you… love, the deeper it becomes. I think that´s true with any relationship.

Then I turned to Keith, wondering what it was like for him – to be HIV-positive.

  • Well… it´s such a part of your life, this epidemic, it´s such a part of my life, that I don´t look upon it as unusual anymore, to be 28 years old and feel that I probably wont live to be 30 or 35… But there´s always that possibility that   I´m not gonna be one of those people who comes down with AIDS… and so I have not given up that possibility by any means.

But… because of Jay´s illness I have learned to appreciate life and relationships and friendships much more than… I would have ever probably been able to say I did, as a 28 year old, and I live and love with a gusto now, with great earnest appreciation… I very much appreciate… the gift of life, and relationships I have with other people, and there´s just no time for – pardon the word – bullshit. There´s just no time.

There´s too many things, too many people are hurting, and… there´s too much suffering… to waste time.

Keith talked about love.

  • I would definitely say, that the love I feel for Jay is something that I… never, would have even imagined… two people could have. Any two people. I just didn´t know those types of feelings existed… and that has been… a real reward, to be able to find that with him… It´s unfortunate that it had to come with this kind of prize.

I turned to Jay.

  • So… what is the best for you?
  • I would say… I am happiest ah… when I, in bed, with my arms around Keith, or Keith´s arms around me, I think that´s… when I´m happiest of all, and… I think that´s… one of my greatest… ah, pleasures in life.

Jay and Keith had lived a very good life prior to HIV, they had traveled, gone on Caribbean cruises, been to Europe, going to Tahoe to sunbathe.

  • We were living like, you know, ”We´ll live forever”. And I owned this house and things were… going well, and we were happy you know ah… and that´s ah… ah, my life, and then, ah… It wasn´t like I was poor or anything… ah… I had no bills when I got AIDS, cause I had always paid everything off. But slowly… the money went, you know, on drugs… illegal drugs that the U.S. wouldn´t license, and… it´s all gone now…

At this time Jay lived on Social security that paid 742 dollars a month.

This lead to a discussion about medical costs, for example AZT was 1000 dollars a month at the time, but there were also other medical expenses, costs for tests and all.  Jay paid 200 dollars in medical care, and Medical, a Welfare Program he said, picked up the rest.

  • AIDS really does ah… make you poverty stricken, ah… This government ah… and the Reagan administration in general, is probably the worst in… this century. He is a very uncaring president, probably one of the most least knowledgeable about human conditions, that I´ve ever seen… and … It´s a real pride in this country that we are so rich and can spend so much on military ah… when we don´t have national health. It´s… ah national shame ah… that this country doesn´t offer national health… Most of Europe does, and so… ah, it´s one of the things that have to change.

When I was visiting San Francisco in 1987, there was talk about that people with AIDS would be put in Concentration Camps. (In Sweden, where I come from, there was a doctor who suggested that HIV-positive people should be tattoed, visibly, so that people could watch out for them. She also suggested that HIV-positive people should live in certain restricted areas, and that the staff taking care of them, should be their relatives.)

Keith did not trust the AIDS-Commission at all. Nor the President. He was convinced that the President would not be interested in the AIDS-Commissions report.

  • About two years ago, one of the first things Reagan ever did around AIDS, was to ask his Surgeon General – who is the highest level doctor in this country – to issue a report on AIDS. And Surgeon General Koop issued a report on the Presidents request, and the report was exemplary. It did not call for these harsh reactionary meassures that will violate people´s civil rights, it called for compassion and education, and it called for some major changes in the structure of this government. So the president did not get from his Surgeon General what it was he wanted…

Keith also mentioned the National Academy of Science that had put together, what he remembered was a 400 pages document, that urged the Federal Government to spend 2 billion dollars a year, on AIDS, but the president did not accept that either, ”because it´s not his agenda”, said Keith.

  • His agenda is to violate people´s civil rights, not to take care of people.

Keith said the President had created the AIDS Commission so that he could appoint certain people that would agree with him.

  • The reason I object to San Francisco General Hospital… participating in helping this Commission gather information, is because I don´t think this Commission intends to use the information, that a legitimate concerned organisation like SFGH, will give it. I am concerned that the City and County is being used by the Commission, to legitimize it, to add credibility.

People come here from all over the world to see how the City and County is coping with the epidemic, because San Francisco rightfully deserves to be a model… for the rest of the world on how to handle this epidemic.  And by allowing the Commission to be seen at the same table with some of the most responsible people in this epidemic, you are making it look like we are condoning their actions…

When Keith and I had lunch , he said that he felt  like a Jew, and  he also mentioned a War Zone.

  • I said… that I can understand, I think… what it must have felt like to be a Jew living in Poland or Germany, in the twenties or thirties. I feel increasingly like… we are heading in that direction of a very similar fascistic society, where certain people are going to decide that large groups of people will need to be eliminated.

People with tremendous power in this country – and they have a great deal of respect – are calling for quarantine, and eventually when the numbers of cases begin popping up increasingly in the heterosexual population, then…  I´m quite sure that the call for quarantine will become a much more legitimate call for a lot of people… they will see it as the appropriate measure to take, and… What will happen is that they will set up Concentration Camps – they won´t call it (that), but that´s exactly what will happen, and… That´s already started happening, in California…

Prisoners, if they are antibody positive, or if they have AIDS, are put into an isolation ward, where they can´t do anything. They can´t go visit their family, they can´t go to the library, they see a doctor maybe once a week, they get no access to any drugs… That is a Concentration Camp. (He laughed his bitter laugh.)

At least people are being violated… That is just an example of what is yet to come, I´m afraid, so yes… I don´t feel like a Jew, but I feel like I can understand what it must have felt like, to be… Jewish living in Germany or Poland at the time.

We changed subject, and talked about their daily life.

Keith was still working – but the tried to be at home as much as possible, when he was not at political meetings. There had been many. Resistance and preparation for what was to come; quarantining for example, or massive violation of civil rights.

  • When that comes, when that day comes, we´re not gonna walk silently to our death´s.

I wondered if he had always been like this. Was he an angry young man?

  • Well, I think you can definitely say that I have become, as a result of this epidemic, a very angry person… I feel betrayed, I feel bitter… I feel all those feelings for… my family. I feel them towards my country.

Keith and Jay had opinions about Keith´s family.

  • Their love seems very conditional, and… they… barely could handle my being gay, but Jay having AIDS, has made it unbearable for them.

Keith did not want to speak about his biological family, he rather spoke about his chosen family.

  • I have a wonderful family in San Francisco. They are not my blood family, but they are better to me than my own family, and that family is some people in the gay community who are supposedly unfeeling and uncaring… and that´s not true! I´m a witness to that!

We talked a bit about the future. Where Keith would live if Jay passed away for example.

  • What about that trip to Paris!
  • Ha! That´s true… Jay and I have made a deal that he´s gonna get better. I´ve never been to Paris and it´s his favorite city, so… and he´s gonna show me Paris, and that´s our big plan.
  • You know motorized wheel chair.

The plan was to travel in the winter, and especially to the Opera. They both loved opera, so it would be in season.

  • Will you go to Versailles?
  • Oh! Definitely! I´ve been there (Paris) four times, and… never made it to Versailles, but I´m going to make it this time if I go. I´m getting better already, just thinking about it!

We laughed.

Keith had talked to me about the Catholic Church, that does not allow the use of condoms for example. Pope John Paul II was coming to San Francisco, and a big demonstration was being planned.

  • The Catholic Church is not dealing with reality, they deal with dogma, and their dogma is endangering the lives of a lot of people. I find it extraordinary hypocritical for the Catholic Church to talk about compassion, and… I´m really incensed that the Pope is coming to San Francisco next week and meet a handful of picked, well picked… people who have AIDS. He´s gonna meet with these people and somehow send the message to the rest of the world that the Catholic Church is compassionate and caring for these people.

But the real message is: The Catholic Church will take care of you when    you´re dying, but they won´t do anything to help you not die… and that is so hypocritical.

Keith continued to talk about the Catholic Church historically, and the bitterness he felt against the church.

  • They are guilty of murder by refusing to allow the education of people about safe sex. They are just as guilty of murder as anyone who is intentionally spreading the disease, by practising unsafe sex.

We talked about the upcoming demonstration. Keith did not think it would be hostile as in other cities, like in Amsterdam, but he anticipated some civil disobedience.

  • What are you planning to do?
  • What am I planning to do? I am planning to go, and I´m planning to let my voice be heard, and maybe… take a few condoms and pass them out. ( He laughed.)

I returned to them, to Jay and Keith.

  • I asked Jay before about what is the best for him, and now I ask you: What is good in the situation?
  • The good times for me, are those moments when Jay´s health seems to be not as big a problem, and he seems to be happy. I rarely see him smile or laugh anymore, and when I see that, that´s the best moments for me, because it seems like a real… rare moment.

Jay smiled, and started talking.

  • Lately, today, I´ve been in a good mood, but ah… lately, I mean emotionally, I focus on every little problem I have.

Here Jay talked so low that I can´t make out all he said, but it had to do with meditation.

  • To take my mind off… all the ills of AIDS, ah, that wears me down mentally. But I´m forcing my self to… ah, not think about these problems, and just get on with life, so… that´s what it´s taught me about… ah… I focus too much on this ear ache or this eye problem or ah… this disease, that disease… I got to learn to, ah, throw it out of my mind, and just ah… be glad for what I´ve got, not for… ah, what I don´t have.

Keith was not satisfied with that attitude, he wanted Jay to be not satisfied, Jay needed to figure out a way to make the quality of his life, the best quality it could be, as other terminally ill patients did.

  • For me it´s been very frustrating, because… I see you living in sheer agony and pain, and I don´t see any reason for you to live the way you´ve been living, and that´s why when I see you laugh, or when I see you smile I think maybe somethings changing and you´re getting back that… desire to improve your quality of life. And I know that if you get back that, you won´t be leaving me, and that´s the bottom line…

And here Keith started crying, and for a while I could not make out what he was saying. But after a while he spoke to me.

  • Some day Jay is gonna leave, and I´m gonna be left alone, and… I would like to extend our time together as long as possible, and I´m gonna be very selfish about that.  I´m not at all gonna be politically correct and say: ”If you chose to die, you can die. I´ll be supportive”. I´m not gonna do that at all.        I´m  gonna be very selfish. (Keith laughed.) I´m gonna say: ”Jay! I don´t want you to die! I can´t make it without you! Please get better!”

Keith had talked about his fear about being left alone.

  • Well, its certainly a big concern of mine… If I were to be diagnosed with AIDS in the future, who´s gonna… do for me, what I hope Jay thinks I´ve done for him.

Who´s gonna be able to help me… get through this emotionally? Who´s gonna… hold me at night, and who´s gonna take me to the doctor… I have some really good friends, but none of them… are in any way remotely close to me, the way Jay is, and so… I don´t know how to deal with it, and that´s the one thing that frightens me more than anything else – is that I´m gonna be diagnosed with AIDS, and Jay´s not gonna be here to help me.

Jay seemed to have faith in the drugs that were being tested, that would halt the virus, and that Keith would not be coming down with AIDS.

  • The longer he… doesn´t have ah AIDS, the more likely he´ll ah… survive. I myself ah… worry tremendously if he should ever become sick, because I personally ah… don´t want to see the memory of our relationship ah… lost, and as long as Keith is alive, and in good health, I will live forever in him… so… ah… That´s ah, why you´ve got to be healthy and ah… I… don´t ever want this ah… love to ever be forgotten… to be a little dramatic… (Jay laughed) … which I can be… quite often.

They laughed.

They showed me around the house, and then we went out on the balcony, so I could take some pictures, and then I said goodbye to Jay.  We decided to stay in touch.

Keith gave me a list with names, it was people I could contact, and out of them all two answered my call; a feminist and AIDS- activist called Eileen Hansen, ”a good source for (a) lesbian perspective of the epidemic” as he wrote, and a SHANTI grief counselor called Brad C.

He then drove me to Artemis, a café. Keith talked about touch, that Jay experienced it as a miracle that someone touched him; ”He touched me!” She touched me!”, to be treated like a human being.

I met Keith at a ”A Time to Shine”- meeting, and at the demonstration against the Pope. I was also in touch with Jay on the phone, he was then on AZT.

During the coming weeks I continued making interviews, with Brad C. for example, and I went to the Speakers Training at The AIDS-Project of the East Bay during the weekends.

I did not have money to stay in hotels, so I slept on sofas and actually on a floor at one time, at friends of friends places – I just needed a roof over my head, and to feel safe.

About three weeks after the interview I called Brad, and he told me that Jay wasn´t doing very well. When I came home to the woman I was staying with, there was a shocking note saying that Jay´s Memorial was to take place that same evening, in their house. I don´t know how I made it, but I got there in time.

One of the things that was said during the Memorial was that Jay wanted his ashes to be thrown at the White House. And Keith wanted the White House to stand in a cloud of ashes from dead men, that had died of AIDS.

On a private note:
When my mother died in June the same year, 1987, I knew where she wanted to her ashes to be – where the love of her life is buried. There were some problems, so in the end I picked up her ashes at a Crematorium in a forest, and spread her ashes my self where she wanted to be. Something unexpected happened while I was doing it – the wind was blowing in different directions, so some of my mother´s ashes ended up on me.

I was about to leave San Francisco, and I remember writing a card from the airport and trying to call Keith, telling him that it was a fantastic idea, but that he should be aware of which direction the wind was blowing.
In the end it did not happen. Jay´s parents wanted to share the ashes, and Keith kept a little to him self.

 

I stayed in touch with Keith, and he kept me informed about Brad C. But then he left San Francisco,  and I lost contact with him. I was not the only one, even Eileen lost contact.

Letter after letter came back, with no forwarding adress.

Keith had moved to another state, and when I finally found him, it was through a cruising site for men, that he had created.

If Keith had had an ordinary mail, I am sure we would have stayed friends until he passed away, but he didn´t, and that is what changed everything. If I wanted to get in touch with him, it had to be through that site, where there were a lot of sexual activities.  At times I did not have access to my own computer, and had to ask permission at two libraries, one in Stockholm and one in San Francisco, to visit the site.

It didn´t bother me, until 9/11, when it really upset me that I could only get in touch with him through that site. Most of the world was upset about what had happened, but it was business as usual on that site. Keith could be very sarcastic, but he never forgave me for being sarcastic about that. I tried to reconnect with him several times through the years, but no.

However, he did not block me from visiting the site, and I went in now and then to see if he was still active, meaning if he was still alive.

To my surprise there was a short film with him talking to people visiting the site. He spoke like a friendly uncle, about being careful, and giving advice about how to live. I so wish I could quote him correctly.

Then one day I just Googled his name, and found out that he had passed away, in September 2012.
There was a text written about him, and in that text was a woman´s name. I managed to get in touch with her and found out that they had been very good friends, and that he had lived a good life. He died of cancer.

Keith had previously lived in New Orleans, and he had one wish and that was to have his ashes spread in the Mississippi River in New Orleans, during Mardi Gras.

So, she took him there, dressed as a fairy with a wand, and she marched behind the musicians with his ashes in her backpack, and eventually spread the ashes in the river.  She wrote: It was his last wish.

I have wondered about what I should do with Jay and Keith, should I write or should I not. And Jay has given me the answer; he didn´t want their love for each other to be forgotten.

I have not written more about Keith, and I think and hope he would agree to that I write about him and Jay.

  • I… don´t ever want this ah… love to ever be forgotten… to be a little dramatic… which I can be… quite often.