Elizabeth S.:
My story actually took place in the ’80s when I was the minister in Syracuse, New York. And many of the young men, gay men were dying of AIDS. And there was only one funeral home who would allow the processing of the body and to have a service. And I was called many, many times. I did two gay services in which I knew one of the men was dying of AIDS. And within six months I was doing those services. I went to the hospital to see one of the men and he was in isolation and he was there and he said he was just freezing but his feet were burning up. And I said to his partner, I said, “He needs a knit cap, because it’ll help keep him a little warm.”
And I’ve visited it a couple of times and one time a nurse came in to deliver medications and I swear to you, she looked like she was ready to launch into outer space. She had the gown on, the gloves on, the mask on, the head covered. And she said to me, “Well, you better not touch him.” And I said, “It’s fine to touch him and I’m here as a minister to be with him at this time.” And so I would say we’ve learned a lot since the ’80s about transmission or being able to comfort, to touch, how to care for. But I really want to iterate that a lot because I think there are still some people who think they can’t touch.
I had an aunt who was a lifelong, extremely devout Baptist, contracted AIDS through a transfusion. Her church was going to refuse her funeral until, I’m going to cry. Until her older son went and said, “How dare you? This family has tithed, has been here all her life.” And they did allow a service. But when I was out at doing a service for another aunt, her daughter who had died of AIDS asked if I would say a prayer at the grave site because no one had done that. And so I did, so that’s my story. And I would say, please honor those who have AIDS and please pray at their funerals and their grave sites.
Craig Matheus:
And I guess I wouldn’t say that. What I think is important for me is that it’s always referred to as the gay plague and that implies that everyone is gone. And I’m here to tell you that everyone is not gone. I’m HIV positive and I know I was fortunate enough to get diagnosed later on. And so when I was diagnosed I was given drugs that were not specifically tested by the FDA, but thought would be effective. So they let me have them without the testing and it saved my life. I think that’s a real important thing. It’s not done. It’s not over. It’s a disease and it continues and that there are people that survive it in many ways, so.
Tony Larsen:
And I would just like to mention that as Craig’s husband now, we just called it partner then, but when we first got together and we were aware of the AIDS crisis was beginning and we both, of course, wondered whether might one of us have HIV. We didn’t know. We didn’t actually want to get tested. We figured, at least at the time there was, it seemed like it was a death sentence. So we would rather not know. However, I did have to get an AIDS test and for probably for insurance or something. And I was really pleased that I came out okay. It was negative because I thought of the two of us, given our lifestyles, I would be the more likely to have it. So if I didn’t have it, Craig obviously wouldn’t have it. And I turned out to be wrong. And so it’s, you can’t always assume that if you one person is more promiscuous than another, that may change the odds. But all it takes is one person. Yeah, one person, so that’s what happened. And so I was surprised when Craig got sick and had some-
Craig Matheus:
When I first got sick, it didn’t even enter my mind.
Tony Larsen:
No.
Craig Matheus:
… my mind that that’s what it was. I just thought, well, I didn’t feel well. I was tired and —
Tony Larsen:
Right. You know what though? We were in Europe when you were first coming down with symptoms. And I remember wearing… I had a couple of tee shirts that said, Fight AIDS, et cetera. And I remember a couple of times being on a bus or a train and when you were coughing really a really bad cough and people were looking at us and figuring it out. And I think that they thought that —
Craig Matheus:
Kind of realized before we did.
Tony Larsen:
Yeah, they knew before we did.
Craig Matheus:
I remember we were in some bakery in London or something, and I started this cough and it was a real serious cough. And the woman said, “When you go back to America you need to have a test.” And I just looked and went, “Oh, okay. I guess I will.”
Tony Larsen:
Yeah. But it was not on our radar. Not at all because I knew that I didn’t have it.
Speaker 4:
Yeah. Craig, would you like to say some more about the difference between calling AIDS a plague and calling it whatever you would call it instead? Can you say more about that?
Craig Matheus:
Well, the whole plague issue seems to be like… Well, reminds me of the black death and stories about that.
Tony Larsen:
Right, right.
Craig Matheus:
That it just adds up. I don’t want to say mystery, but it adds up, takes it out for more than just an illness or a disease. And I know it is more than just an illness or a disease, it killed hundreds of thousands of people. But that adds to someone who has it being very uncomfortable naming it that to come out and say, “Oh, by the way, I’m HIV positive too.”
Tony Larsen:
“I have the plague.”
Craig Matheus:
Oh, you’re a plague victim, that kind of… So that. And when I first found out, that’s how I looked at it. I mean, I thought this was it. We’re done.
Speaker 4:
Yeah, a death sentence.
Craig Matheus:
I thought, well, I’ve got a couple of months maybe and I’m going to be dead.
Tony Larsen:
And I didn’t know this, but he was looking at the garden that he’d put in and thought, “This is the last garden. I’ll never see a garden again, my garden.”
Craig Matheus:
This in interesting, I have not balanced my checkbook. I used to sit down and get my monthly statement and balance my checkbook. I thought, well forget this and I really haven’t. So in 20 some years I have not balanced my checkbook. I don’t know why in my mind, that’s what I thought. But I also remember we went and saw whatever episode of Star Wars and it started, music is starting. I’m sitting there crying and I thought, “What is this about? It’s Star Wars.” And then in my head I remember thinking why I never thought I would see this next episode because that was filmed years in advance. So I thought, well so and I guess that’s kind of the opposite of the plague. I mean I had to continue to think that I could make it and I could live through this. And I still, this is really the first time I have sat down and told-
Tony Larsen:
This public-
Craig Matheus:
This public that I have this illness. I had to consciously make an effort to think, “Am I going to tell this story or I’m going to emphasize gay marriage or something like that?” Which is equally important. But so-
Tony Larsen:
Yeah, but it’s another story.
Speaker 4:
Well, you’re in a unique position to tell this particular story.
Craig Matheus:
Yes, yes. This is interesting, I’m assuming there are a lot of surviving people, but to be real honest, I don’t have relationships with people that are surviving because of… I mean, I don’t belong to an organization of people with HIV, who are HIV positive or anything like that.
Tony Larsen:
Yeah, we just know a few people -e-
Craig Matheus:
We know.
Tony Larsen:
…who we happen to know because they’ve mentioned it. But we’re not actually related in other ways.
Craig Matheus:
Yeah. So think it’s important too that out of all of this incredible sadness, that there are, I was lucky enough I made it through and I think that’s just when I got diagnosed. And also I think the type of virus that I have and how it affected my body. Because the doctor did figure that by the… When I was diagnosed that I had had it a long time and it just was incubating inside of me and didn’t surface, so. And that’s been more than 20 years that I was diagnosed.
And the other interesting thing is I would say your experience with the nurse, I mentioned this before, when I had the x-ray and the day of that, I had the X-ray and the nurse took it and she called the house later on and she said, “I’m not supposed to do this. And I said, “I never have talked to a nurse after an x-ray. And she said, “I think,” she said, “You have pneumocystic fibrosis.” And that, and this is another that, I knew what that was. I knew what that was immediately. And I thought, “Oh well good. Thank you.” I just, you just pushed that all out.
Tony Larsen:
She was giving you a hint.
Craig Matheus:
She was giving me a hint like —
Tony Larsen:
And we didn’t know.
Craig Matheus:
… and she said, “If you’re not, you need to see the doctor really quickly.” I said, “Well, thank you. I’ve seen the doctor.” I had the test because I saw the doctor. But even then I was… When the doctor called later on the next day or something and said that I was positive, it was a shock to me even though obviously what she had said was you probably have it. It was just kind of put that out of your…
Tony Larsen:
Well, the doctor said you were like 97% positive. And I said, “Well, we must be part of the 3% because there’s no way-”
Craig Matheus:
You don’t have it.
Tony Larsen:
… no way you could have it.” And I didn’t. That’s what I thought.
Craig Matheus:
Because we were together quite a long time and I think I just lucked out that my viral load was consistently zero until I had a big flare-up.
Speaker 4:
Thank you.
Craig Matheus:
You’re welcome.
Speaker 4:
Doddie, what would you like to tell us?
Doddie Stone:
Well, my experiences with AIDS go back to the ’80s and San Francisco because I was part of the gay scene in San Francisco. And most frequently was in men’s bars because at that time my husband was gay and he’s since passed on, but not from AIDS. But at that time little by little people were disappearing that were familiar faces in the bar. And I was going to John F. Kennedy University in Orinda, California working on a master’s degree. And as part of that degree you got involved in projects. And so Shanti was just forming in the Bay rea at that time as a service agency. And I went to what was considered to be the first AIDS training at that point when Shanti was moving from being in grief counseling into specifically being grief counseling around AIDS. So in that time that followed, there were a lot of Memorial Services and we always sang Amazing Grace. And I still think of those days at the times that I hear that song.
Fast forward and at the time I hit the Shanti project, I was a teacher. That was before my minister days and fast forward into the ’90s and I’m now at Starr King and I’ve reached the point where I have to choose what I’m going to do for a chaplaincy. So I went to San Francisco General Hospital and worked on the AIDS ward and there, things had changed a little bit. That was the ’90s by then and people were touching people and although a lot of the patients that we saw had family members that didn’t want to see them, they were still comfortable with us being there. And so that was the big thing that I was doing at that time around AIDS and Shanti, of course continued and still is, it’s doing work in the Bay area, although I’m a long from there.
I think in answer to the question about what to remember is that it’s not over yet. And in Terre Haute, Indiana, where I now live, there’s not too much attention paid to AIDS, although there’s a small group there. But it used to be that you had AIDS Remembrance Day on I believe was December 1st. And now it just kind of goes by and groups don’t gather and candles aren’t lit and it’s just kind of been pushed down under the carpet. And I think that we need to be aware that people-
Craig Matheus:
Well, I want to say thank you for doing what you did at the time. I can only imagine how that would have been thought of and appreciated. And so thank you. And I remember years ago before I had it too, I had visiting friends at San Francisco. I had a good friend and we were at a dinner party. And there were people in the health profession there and we were talking about AIDS and they were leaving the area. And I never, because it was just so difficult. Everyone they touched, all the patients were dying.
And I do remember that and thinking how terrible that is. And with the doctor that I have even in Wisconsin, we haven’t talked a lot about his experience, but that was his primary job, [inaudible 00:17:48] at the hospital I went to. And he did say last couple times I was in there visiting him. How difficult it was losing patients. That everyone would come and then within the year or so they would be gone. And how hard that was for the medical profession even after they realized you could touch and it was okay, right? It was just a really hard time.
Speaker 4:
Yeah. So that leads into my next question for you, Doddie, which is what motivated you to choose San Francisco General and specifically the AIDS ward for your CPE chaplaincy?
Doddie Stone:
Because I had earlier done the work with the Shanti Project, I just felt that was where I wanted to be.
Speaker 4:
And you had something to bring to it too, it sounds like. You knew something that maybe other people didn’t know.
Doddie Stone:
Right. And somewhere along the line. And one of my experiences with a Memorial Service for AIDS, one of the partners of the person who passed, handed me a little tiny box and in it were just a couple little personal objects, a rock and a couple of other things. And I’ve always kept that little box to remember there was a person there once, not just a box.
Craig Matheus:
Another thing that I think that emphasizes is the current need for some sort of universal health care. I mean I was lucky enough that I had a really good job and I had good insurance and my job was understanding, not so much understanding of AIDS, but that I was sick and they let me get time off. Without that insurance, it would have been impossible. I don’t know what I would’ve done. Because even now, when I went through… When I retired and I was checking through Medicare and I needed a supplemental plan and a drug plan, it’s expensive. When I started, I think, when I started, one of my pills was like $800 a month and I take two AIDS-related pills and the other was cheaper but not much, a little bit. And when I retired I thought, how are we going to afford my $1,200 a month on medication? That’s outrageous. And so the whole look for the future is insurance is really, really important and medical care and who’s going to pay for it is really important.
Doddie Stone:
I don’t know if there’s any custom now like there was then of making quilts. But the AIDS quilts carried quite a message. To see them spread out over all areas, they were in Washington, D.C. They were in San Francisco. They traveled many places.
Craig Matheus:
They went to the Parkside, which is a University of Wisconsin at Parkside and they all, they had several of the quilts displayed and it’s just-
Tony Larsen:
It was very moving.
Craig Matheus:
… really moving and really touching and just —
Elizabeth S.:
Yeah. I remember as a colleague when Mark DeWolf announced at our ministers meeting that he was HIV positive and that was probably late ’85. And then following that and then Charles Slab, who was the minister in Schenectady, I was serving churches in the St. Lawrence district and that the congregations made a quilt piece for it. And when it came to Syracuse, I volunteered to be a guide around the quilt. You dressed in white and took your shoes off to wear socks. And one of the first things I did was go to find Mark’s quilt and Charles’ quilt. And that was one of the very first experiences that we ministers had of losing one of our own. And it hit us all very hard. And of course, Mark was very young, which was another piece of it that he was so young. And Charles, I had not known how his family and how members of the congregation surrounded him at the end.
And I kept thinking that I was very pleased and thankful for the Unitarian Universalist community. And the ministers who gathered around and affirmed those of us who just went to the hospitals, conducted the Memorial Services and tried to help people understand that they were dying and they needed love. They needed care and that you could touch and that they needed-
Craig Matheus:
And walk in the same room.
Elizabeth S.:
… Yeah, be in the same room and touch them. And we did. I think we did that well as colleagues. And then we needed to comfort each other. We had just lost very dear colleagues. And so the next year after Mark had died when the ministers gathering, we had a Memorial Service, we had small group. I mean, we realized that we needed to comfort one another for our loss, for both of those ministers. And we did, we did. And that tested the inherent dignity and worth of every person belief as Universalists and Unitarians, Universalists that we lived it. We really did live it. And we did honor the integrity, the worth, the dignity of those who were dying of AIDS.
Speaker 4:
It’s different too when it’s close to home, like your colleague, in your professional role, you do Memorial Services for people in your congregation or people in the community who die. But when it’s a colleague, it somehow puts a different slant on it.
Elizabeth S.:
It does. Or a member of your congregation.
Craig Matheus:
Well, I remember when I was teaching, I would, every once in a while during family life we had a good AIDS unit and every once in a while some child would say, “Oh yeah, that’s what my uncle died of or that’s what so and so died of.” And so that would come up that way with the children. Then I would turn to the blackboard, take a deep breath and turn back. We’d have a little discussion. I also remember being really, really pissed off. I was really mad. Do you remember that? I was, I mean, really sad, but I was mad.
Speaker 4:
That you had AIDS?
Craig Matheus:
Yeah, that I, what is this? Why did I get this? Just that whole really mad.
Tony Larsen:
Well, to be honest, I felt guilty because I thought of the two of us, I was the one who should’ve gotten it. That’s what I felt.
Craig Matheus:
I mean, he lived in San Francisco area.
Tony Larsen:
So yeah, I’d grown up there, but also I certainly —
Craig Matheus:
Go back home.
Tony Larsen:
Yeah. When I’d go back for visits and things. So, yeah.
Doddie Stone:
And one of the things that was hard in burying folks was that when I was doing my internship in Louisville, Kentucky and one of the men died, the parents didn’t want it mentioned that he was gay, much less that he had died of AIDS. And so for the partner, this was a very incomplete service, except for those who immediately knew that were around. But they did not want it mentioned either that he was gay or that he had AIDS.
Tony Larsen:
Speaking —
Speaker 4:
I wonder, go ahead.
Tony Larsen:
Well, speaking of which, there was one couple that I met and one of them was dying of AIDS. And when he did die, his partner of course wanted to have a service and we were going to plan it. The person who died, his mother had disowned him and hadn’t spoken to him for probably a dozen years. And, but she came back in and said she would be in charge of the service and because marriage wasn’t… There was no gay marriage then he, there was nothing he could do. He was allowed to go to the service. But she had a minister that she liked do the service.
So we had a separate thing at his home and we memorialized his partner, but it was very clear to me then, and this is where it talk about intersectionality, where different issues cut across. Gay marriage and AIDS are two different things. But in this particular case, it would have made a difference if he could have been legally married, that he would’ve had the right to do. And he should’ve had the right. That was just wrong that that could be done. Especially given that the mother had disowned him for being gay. So how does she come in and get to be in charge? I still, I think that’s different-
Craig Matheus:
Well, I never told my parents. My mother died a while ago, but my dad came and lived with us and then we moved him from Milwaukee to Racine, he came to live with us. So we never had, I never told him. He knew I was gay and he was at our wedding, but he was also 96 when he died so he was in his late 90s and I thought, well I-
Tony Larsen:
And I also thought it —
Craig Matheus:
I’m just not going to do it.
Tony Larsen:
… Wouldn’t do him any good.
Craig Matheus:
It wouldn’t do me any good. It would just make him —
Tony Larsen:
It would just make him —
Craig Matheus:
He would’ve worried,
Tony Larsen:
He would have just worried.
Craig Matheus:
His last years would have been worried about me. But on the other hand, there’s, this is maybe part of why I think why did I get so pissed off. My mother died of cancer. We talked about that all the time, “Oh, mother, how’s mom doing or whatever?” And that was totally acceptable. And here, I have a major illness too. And it’s just sort of like just be quiet, don’t say anything about this. So that whole societal about being quiet. And on the other hand that I played into it, it’s not like when I was diagnosed, I didn’t start a group on my own.
Speaker 4:
And there was a time when people didn’t talk about cancer, either. It was very hush, hush. And now we’re talking about AIDS in a different way than we did 20 or 30 years ago.
Craig Matheus:
Maybe that’s something to —
Speaker 4:
So there’s some progress,
Craig Matheus:
A future thing you’re saying for what to know for the future. It’s a disease, it’s an illness. Talk about it. It’s not, you do feel like it’s your fault. I figured, “Oh, did I go home with someone who was a real trashy or?” And you start to like, “Whose fault is this?” Well, you got a disease, you were sick.
Speaker 4:
Thinking about Liz’s aunt, And how she contracted AIDS through a blood transfusion and was still shunned.
Elizabeth S.:
Yes. And what we learned almost 20 years later, her children never told the rest of us. They suffered that all by themselves until it was my other aunt who died, then they told us that Aunt Edith had died of AIDS. And we just cried because we would have been there for her and for all of our cousins and it still hurts. It still hurts. But again, they were not screening blood. Do you know the movie, And the Band Played On? That was the reality that if you got AIDS, you had done something wrong, something bad and you deserved it. Or I mean the theology in the Baptist church was just hurtful, painful, mean on. And for me who firmly believes in a transformative power of love, that’s God. What kind of God would they think would do that? You know? And so my Universalism got really tested during that whole time. Really challenged because if you do believe in the inherent dignity and worth of every person, you can’t behave that way. You can’t hurt people that way. You just can’t.
Craig Matheus:
And the other thing, it’s interesting how it all plays together. Marriage equality and people getting married now and acceptance of the relationship. It’s all together to me because that… You are having a partner was incredible, was wonderful, he could take care of me when I got sick. You weren’t by yourself because you felt like you were kind of by yourself anyways and I couldn’t help it. It just felt like kind of unclean or I did something wrong. You know, this is like, Oh but there’s someone else going, “No, no, no that’s okay.” And that’s there because people can now get married and support each other. It just seems to be, it’s all the connectedness of everything. It’s incredible.
Elizabeth S.:
I kept thinking, you got to get a HIPAA. You got to let the doctors know who they can talk to because they won’t talk to anybody that’s not on that HIPAA form.
Craig Matheus:
Well that was my experience at the pharmacy the first time I went to fill my prescription for AZT, which did not work. I was sitting at the pharmacy and I, in my head, it still is like the pharmacy had 150 people in it and I’m sure there were like six of us. And the pharmacy worker came to the counter, “Who’s here for the AZT?” I thought everyone in the world was looking at me going… And we both looked at each other and went, “Oh my God.” You didn’t want to get up and get your pills. And so that was pretty bad.
Elizabeth S.:
And that was part of the advice you needed to give when you did services of Holy Union. Because again, they had no legal standing when something like this happened. And so that, but the durable power of attorney, there are things but yes, that’s one of the things I’m glad it’s changing. And with legal marriage, a lot of that is not, you still need the HIPAA even though you’re married. I mean my children, I have to list who a doctor could talk to if I go end over teakettle down the stairs. They won’t call unless the name is on that list.
Speaker 4:
Right, so we need to wrap this up, but I’m wondering before we end, if any of you has any sort of final thing that you’d like to say to the people who are going to be watching this video?
Doddie Stone:
There’s a lot of work still to be done, not only in this country but in other countries, particularly, I’m thinking of Africa now. Where we still don’t have all the answers or we still have a lot of work to do on attitude change. The stories of your aunts, just to remember that AIDS has nothing to do with who you are, AIDS is a disease.
Elizabeth S.:
And I would say keep yourself very grounded in Unitarian Universalism because our theology and our practices will help you considerably as a minister, as a patient, as a partner, in any of it.
Craig Matheus:
And I think education is really important. I fear when I see current political things where people that I look at who are educated or scientists or doctors who studied something, are then looked suspect just because they’re finding out information that maybe everyone doesn’t want to hear or whatever. It’s really important to, I mean, I think of Africa, the Ebola stuff where there’s all these misconceptions and fantasies about an illness. And just the education’s really, really, important and to believe those that are educated or that have done their research.
Tony Larsen:
Right. Right.