Interviewed May, 1998
My father was stationed at Cutler Ridge just outside of Miami beach which was where I was born. I think my mother had a couple of martinis in her and chicken cacciatorre for dinner. My aunt was with her because my father was in Korea at the time, or stationed elsewhere, but I don’t believe he was around then. My mother’s sister came to stay with her during the end of the pregnancy and that was down in Florida. As I remember it was a story about chicken cacciatorre for dinner and a couple of martinis and “Uh, oh,” it’s time. I guess I was a fairly easy birth.
My father was in the military. He retired when I was starting junior high school. He did some social work for a while before he completely retired. He was in the Air Force, he was in some military programs, or on the GI Bill, [he] did some training as an opthamologist or optometrist but never really pursued that and ended up going back into the service. So [he] ended up, with ROTC, doing about thirty years in the air force. We moved around quite a bit. My mother, I think, worked briefly for a dental assistant while my father was in school, but otherwise pretty much was a housewife.
I’m second generation Polish and Polish‑Russian. My mother did not speak English when she started school. As a child, I remember when they’d argue, at times they’d argue in Polish. I think that their generation was really geared to speak English, so we were not brought up bilingually but they would often just argue in Polish. They married relatively late for that generation. I believe my mother was 29 and my father 30. She was attracted to him, at how he treated his mother, which also became a problem later on. [My grandmother] was something of a religious zealot, and both my parents are alcoholic. My mother’s deceased for ten years now. My father for many years did not drink after recognizing his alcoholism, but he still drinks every once in a while now. I grew up with that alcoholism. Each handled it in their own different way. My mother was fairly reclusive and did not leave the house very much. We were stationed in France for three years and I guess her license expired in that time. She never had her driver’s license renewed and became quite the home body. My mother was fairly intelligent, very well informed for someone who very seldom left the house, and I think even my father [was] too, in his own way. He had a different way of thinking, I want to call it more linear thought. My mother was more the artistic type. That’s sort of the nut shell description. Probably some of my earliest memories are around Bangor and Dow air force base before it became the international airport. I remember sometime about first grade or maybe kindergarten, the teacher was playing some musical themes and one was the air force theme, and I raised my hand and I said, “My dad’s in the air force.” And, the response was something like, “All our dad’s are in the air force.” I had no idea that this was a military school. I thought moving every few years just was what everyone did. The other neighbors would come and go and that’s sort of what I grew up with. I remember, there’s a first time I think maybe when I was eleven or twelve when I met someone who had lived in their house their entire life. I was astonished.
First experience with death, beyond the ducklings and animals, it was probably my mother’s mother, my maternal grandmother‑‑who was the first of my grandparents to die. I think I remember we were here in Maine, she was down in New Jersey. The night before we were to leave to go down for the funeral, my mother’s staying up all night doing the dishes and fussing with stuff and I kind of saw her not necessarily withdrawn, but I guess grieve and mourn in her own way. I remember my mother staying up late and watching my mother do unnecessary things around the house just because she couldn’t sleep and didn’t want to go to sleep and that her thoughts were with her mother. Seeing my first memory of death. I’d say I’d be eleven or twelve.
I think my father every once in a while would try to get us to go to mass, not with great success and my mother was probably very much a‑religious. As I mentioned, my father’s mother was something of a zealot around Catholicism. My mother lived in his family’s, my father’s family’s house for a good part of the time that he was in Korea and she found it very very difficult when I guess grandmother was always slipping her religious crap under the door. So I think my mother became sort of a‑religious. My father, just once in a while, would go through these spells and we went through the catechism, the confirmation, and other than that it wasn’t real regular. After I was diagnosed, my father became, the church became much much more important to him. He turned to it, much more than I ever remember before, and it has since become a very important part of his life. There was no real strong feeling one way or the other around the church. So, I guess I picked up from my mother that it was more of a bother than anything else and I couldn’t feel any real connection, I didn’t sense any real connection. It was almost out of a sense of duty that we went other than any real spiritual need. I didn’t pick up that as a child.
I have a sister who is two years younger than I and a brother who is three years older. I’m the middle child. I think fighting with my brother one day and then close to my sister, and then fighting with my sister and then close to my brother. I think very typical sibling stuff probably. Though I want to say I was maybe a little more close to my sister than I was to my brother. He was a little bit more into sports and guy stuff than I was. I was a little more into the doll stuff so that I think I was probably a little closer to my sister. [Today} it’s very strained between my sister and I. Very very strained. I think it’s polite at this point but I think at times we can [barely] talk about the weather, she’ll get me angry and I’ll get her upset. We used to be ‑ fairly good friends‑‑I want to say in our later teenage years, early adulthood. But, we really look at the world differently and it’s very strained right now. My brother is an active alcoholic, and although he’s pleasant enough and really not a mean or a vicious drunk, it’s hard for me to be around him at times because alcoholism pushes a lot of my buttons. I am more easily, and have been more easily around people who are heroin addicts than I can people who are alcoholics. There’s something about that alcoholic behavior that is very very different for me than someone who is drunk. So, there are times it’s hard for me to be around him, although he means well and he’s a nice enough guy. But still, again, my sister [and I] right now have a very very strained relationship.
I think around being [a family] in the military, particularly the three years in France, there’s a perspective around the world that it gave me that I think that a lot of people don’t share here. Where some of the places we played in were bomb craters. Close family friends we had who spoke about being trapped in doorways by snipers, and thinking how people here don’t realize the horrors of the war, of how those experiences will have affected generations. I think that shaped me. We used to play around Roman ruins, and some of the houses that were originally farm houses from the thirteen and fourteen hundreds. There’s history. I think that experience really gave me a perspective I might not have had otherwise. I think that also shaped me from having a sense of history. I think that we are fortunate in New England having a little more history than much of the rest of the country.
I ended up becoming quite the loner. When we lived in France we did not live on base and because it was the generation my parents came from, they made no real attempt to learn any French, so I didn’t get that encouragement. When I was out of school and certainly during the summer months there was no one around for me to really play with that I could understand. I would often go off by myself and in the woods nearby, I guess that’s how I learned to cope and survive the alcoholism and the fighting‑‑that’s how I would escape. There weren’t other people who I could think of as any real strong influences, with the moving from here to there, there weren’t any real strong family friends that lasted more than a few years.
I think in my adult years there have probably been several [strong influences] through going to school, through working at OUTRIGHT, community work, through many of the people who have long since died of AIDS, and it’s hard to isolate just a few at this point. I think everyone particularly in my adult years have influenced me or touched me in one way or the other. I was recounting a story this morning … in the Sunday [New York] Times there was an article about a guy who did interviews with people by picking them out of the phone book, and I just found this fascinating. It reminded me of a friend I had, one of the first few people who I met through the people with AIDS coalition in New York, and he had a great gift for listening to people’s stories and just gathering their stories. I think he was genuinely interested in what their lives were like and I also believe that there are some people that god just needs me to know and if I don’t get to meet them/get connected with them the first time god puts them in my path again. So, we were riding up to Connecticut where I was living at the time and then it dawned on me that I had met him ten years prior. I remembered having met him, and we were invited to this fancy schmancy cocktail party at one of the grand country estates and I’m thinking he’s going to be absolutely bored, and I was the one who felt left behind. Because he could go up to anyone and just ask their stories, just ask about them, and then they would spill their stories about childhood fantasies and dreams and wonderful little vacations and I was just in awe. He died a couple of years later. I was devastated, but I always remembered that gift that he had of listening to people. I have to remind myself every once in a while to listen to people, and if I kind of shut off about my own stories, which is not what we’re doing here, and encourage other
people, then it’s really amazing. There are many people throughout my adult life who have given me gifts such as those.
I think I used to have a sort of romantic image of myself as the artist loner and then I thought well wait a minute, I’m really a very social person in many ways and I really rely on my community. And, although I rather value my time alone, I value my privacy and I value my work time (I’m very solitary at work). I really need some of that socializing and that connection with community, and I’ve used the down time to myself to recharge a little bit. I’m doing the Myers‑ Briggs stuff and I think of that description of introvert/extrovert and I’m thinking how they explained it to me is where/how do you really recharge yourself. I think that I enjoy being around people but it also drains me.
I sometimes joke but I think it’s true that I could be the poster boy for the politically apathetic before I was diagnosed. The three hundred fifty year relationship I had while I was in New York, the three and a half years which felt like 350 years, he was very politically involved with local politics around NYC which involves being with movers and shakers. [He] would often have these meetings over at the apartment and these envelope stuffing things, and I would go to the opera or go to a movie because it just bored me, I just was not at all interested. Governor Cuomo came to this fund raiser for him, he was really fairly well connected, and I just didn’t care. It really wasn’t until after I was diagnosed and I really benefited by many people who had gone before me and put themselves out on the line and volunteered, who put themselves out in order to make it a little bit easier for me when it happened to me, and it did make it a little easier. I thought that as I came to grips a little bit with the emotional roller‑coaster that was happening with that initial diagnosis that I’d like to kind of return some of what people had given me, and so I thought I’d help out with meals or answer phones or something and someone said, “You know they’re taking applications for the board of directors.” And, just out on a lark put it in, and two weeks later I’ve gotten elected to the board of directors. Then discovered just by virtue of sharing my particular story that there are all these people there who I thought of as the movers and shakers in the AIDS community in outreach in New York that I began to meet who were listening to me and also I listened a lot. So that’s how I got into, accidentally stumbled into, community work. I think as I was able to do less job type of work that the volunteer work became much more important to me.
This is where my community is. I told you earlier I was feeling in a little funk today. I came in early sat at Coffee By Design, and it was almost like the reception line of people coming through and it seemed like every three minutes someone would go by and say, “Hi Tom how ya doing?” And all the people I have to get up and give a hug to and I’m thinking this is where my community is.
I really did love, love living in New York. There are times I miss it, there are things about it I don’t miss. I was there for about 8 or 9 years, and through that time it was the right place for me to be. And so called home for many years New York as well which I think I survived by being able to come back to Maine for parts of a summer or get a little down time here and there‑‑that introvert thing, getting a little recharged. Once in a while I’ll do the reverse, I’ll go down to New York to recharge in another way.
I don’t think that I was really in any one social circle or clique in high school. I might have been closer to some of the drug using cliques than others but there were some kids in the intellectual, nerdy circles that I was close to there … some of the girls and more cheerleading type of circles I was a little close to, never in the jock core, or shop. I think that part of it was to get whatever social needs I could have met without revealing too much of myself, without that fear of being discovered as being gay. I hung on to hope that maybe this is one of the longest phases that anyone’s ever gone through, that I was not doing something right, that the heterosexual thing hasn’t kicked in yet; and being from a small town in Maine I was very much afraid of people who guessed and taunted me because of that. I dated in high school, not terribly successfully but I did. One or two women I really genuinely liked and they liked me but I guess it wasn’t quite enough. I tried to stretch that out and play that for what it was worth. I think it was really more around gender issues. Gender roles. Because I remember that I wanted the Barbie‑doll but they weren’t quite gonna do that, so they got me the Ken‑doll. I remember playing with Ken‑doll behind the chair or whatever in the living room and we were going shopping or something and my dad was driving and he said, “Come along,” and I said. “Well, I gotta get you know,” and he said, “No, no you can’t take that with you people will think you’re a girl.” And just right then realizing that there were very defined roles of what little boys could do and play with and what little girls could do and play with, and some of it was okay if I kept it at home but don’t do it in front of neighbors, keep it a secret. I liked girls but there was something more about the guys that seemed again slightly forbidden because I never heard anyone talk about feelings about guys. Okay, I thought, this is sort of like the doll thing, I have to keep it a secret. So I think at an early age I had a sense of that difference and even though I didn’t quite know how to put issues about sexuality around it. I was more curious to see other boys naked than I was seeing other girls naked.
Ronald Spencer, Ronnie Spencer … he was my best friend but I had always hoped there would be something more. As I think he grew to be more and more heterosexual he also became kind of hurtful around issues of homosexuality. We played around, we did the overnights every once in a while, and I think that I always knew that meant more to me than it did to him. I remember him talking about trying to brush his hands up against women’s butts and I’m thinking, ‘Okay, this is something I don’t have any interest in.” And really sensing that’s the direction he was going in and then him making these hurtful comments about homosexuality and guessing that’s where I was going to go. In retrospect realizing how hurtful they were.
I would say a mixed student‑‑that there were some things I did fairly well with and some things that I didn’t. Maths and sciences I didn’t do real well in, not algebra, geometry I did really well in because I could draw pictures, because I could get it, I could understand, I could see the pictures and I actually did very well in geometry. With the very abstract things like algebra I just could not get. I was thinking last year about one of the science teachers who I seemed always to get a hard time from but it wasn’t necessarily that I didn’t always get it. In retrospect realizing that it was probably out of homophobia that he was really harassing me. I just could not understand why did I get all this crap around the way I kept my notebook or having something inlaid or having the topics I chose for a science report being mocked and I just couldn’t figure it out until some years recently. I think some of the times my not doing well was out of boredom. Because … one of the English teachers said, “I’m going to pull together this special class that would be optional, people will have to stay after school but we’ll get through an accelerated program.” And, I was surprised by some of the students he chose to be in it because there were a couple of students who I thought were the traditionally slower students. We went into this accelerated class of going through the material at least twice as fast as the other class and every one of us just blossomed with it. It was interesting, we were challenged, it was a smaller class. I probably still maintain that I’m above average, not the top of the class but I wasn’t right in the middle either, I was in the above average grade point but I think a lot of that got pulled down because some of the classes that I just didn’t have much of an interest in. One little story comes to mind‑‑when I was attending high school, they made their first attempt of having a guy’s home economics class. There were probably eight of us in this class, and during that class because it was home economics, we had the opportunity to take the test for the Betty Crocker homemakers scholarship. We took the test and about six weeks later over the intercom, “Tom Antonik was the winner of the Betty Crocker homemaker award.” And I’m going, “Oh my god.” And I did, I won the scholarship award, got my little pin and there were home economics women who were pissed off at me because this was a traditionally girls role. I’m thinking, “Oh, they had to announce it over the intercom. Every shop guy is going to hear, ‘Oh yeah Tom got the homemaker award.”‘ That’s funny how that memory comes up every once in a while.
I think the real head over heals one was someone who I saw walk through the door at the Phoenix when the Phoenix was still here and he was the most attractive young man I’d ever seen in my life and just absolutely smitten by him. I think he was living in Texas at the time so he was only passing through, but then a couple of months later he was back again and I guess was kind of dating a mutual friend, with whom I probably shattered every piece of self‑restraint and personal moral codes and ended up sleeping with him in the same bed as this friend who was pretending to be drunk and asleep. But it was a really strong attraction and a few weeks later he went back to Texas and it really became this very intense long distance relationship. I remember that stupid giddiness that, I had a therapist who really described it well‑‑he called being in love a mood disorder, and I had it, badly, a very bad mood disorder. Which I thought was of course the most wonderful thing in the world. But I moved to New York, I started school, and I think I actually paid for the ticket for him to come out. As we actually started spending some time together it was in a pretty awful apartment situation and I had a small windowless room in a very not good section of New York in a very sub‑standard building with I want to say a sub‑standard roommate, whose apartment it really was. Brian ended up staying in the apartment all the time and I realized that he was an active alcoholic. And, so eventually the dreams of being together and all the fantasies and all the mood disorder stuff very quickly but surely slipped away and that was hard, and after about a month or so he found someone to pay for his ticket to go back and returned. He was probably the only one I felt the most head over heals with. I still drink once in a while and every once in a while had more than a few but not that much any more partly because I physically can’t tolerate it. I think I’ve always had my fears around alcoholism, I’ve always kind of been … watched myself about that. I think when I started doing a little bit of binge drinking after I was diagnosed I went to one AA meeting and I realized that this really isn’t where I’m at. I think I need to watch myself but this isn’t where I’m at. I think that perhaps I had that danger of being there but don’t feel that I’ve ever been there. But I still once in a while enjoy my drinks, but not too often.
First long‑term relationship he was an alcoholic but he was not active and I never knew this until after we broke up. My very best friend in New York he was an active alcoholic and he was probably the only active alcoholic that I could really tolerate being around. He was also at times a heroin addict, and I could, as I said earlier, more easily deal with the heroin addiction than I could with the alcohol except with him. I think it was because of his personality‑‑he could be just as obnoxious sober as he was drunk. I think there wasn’t that whole very distinct personality change when he drank. He knew that he was. He’d wake up to his vodka and tonics and drink them throughout the day, but I think that was just so much of who he was that once in a great while when he was really drunk it was hard for me to be around him.
Oh, let’s see, going back to that Myers‑Briggs stuff, last time I did it I was INFP, so that I think there is very little analytical part of my brain that functions but in the description it said logic is an option. It doesn’t mean that I can’t use it or I can’t draw upon it when necessary but it’s usually one of the last options that I’ll actually draw on. As far as making decisions I rely a lot on gut, a lot on intuition, a lot on trying to get as much information as I can from other people and often about their feelings around things. I’m not a real quick decisive person around major decisions. I really try to leave things as open as I can until I absolutely need to make that decision. I really rely a lot on my feelings and intuition when I make choices.
The biggest life decisions I have probably have made have been around my diagnosis and how to deal with that. There are certain realities about that I can’t deny‑‑around my energy levels, medical decisions, things that I don’t have a whole lot of say over how I’ve dealt with those. I don’t think I’ve had a fair amount of say, I think I’ve kind of been forced into making decisions that I think still I try to exercise as much control around as possible.
I believe it was in 1987 1 was diagnosed with an AIDS diagnosis and the year before that I knew I was HIV positive. [11 suspect that I showed some symptoms as early as 1982, my physician noticing swollen glands and just noting it and mentioning it and jotting it down on the chart. I remember him observing that. A funny little story, I saw him, my doctor, on his very first day of practice. He wanted a fairly quiet practice in allergies and immunology. I think it was his very first day of practice in 1982 that I made my appointment for my physical. His life changed dramatically in the next few years. I think every once in a while about getting in touch to say, “Hi, still alive.”
You know it’s odd I can’t remember the exact date, or sometimes I’ve had to fish around for the exact year. I used to think … I thought I would never ever forget. I would remember odd things about the weather. I remember finding out I was HIV positive. It was scattered clouds, just that hint of summer happening so when the sun would go by it would be warm and when the clouds go by it would be cool again, but I sort of knew that summer was on it’s way. Some things I don’t even think I remember well about the office I was told in. I was participating in a research project with Columbia University that was surveying the psychological, emotional, and sociological effects of AIDS on quote end quote healthy gay men. Along the way they decided to call for blood work as a leg of the study if I so chose to participate, and I so chose, but I decided not to find out my results. Much of the standard results could be forwarded to my doctor, but the HIV information I had to go get myself, [they] actually handled [it] very very much the way that anonymous testing is done today. When I decided I wanted to find out my results, partly because I was getting in a new relationship after that 350 year one, and I really thought that I’d find out I was negative and that I’d have to do all the things that everyone else needed to do to keep ourselves safe. I think at first my physician discouraged me. I think I’d gone in for a standard check up and talked about wanting to find out those results and he said, “Tom if you find out that you know you’re negative you have to be careful that you don’t become infected, and if you found out you’re positive you still have to be careful so that you don’t give it to someone, either way all you find is that the test results make people crazy.” And [it was] in a joking sort of way, but I think in a real sense because at that time there was no AZT, absolutely no treatments whatsoever. So, finding out one’s own test results was almost like this waiting game for death results or a sentence of death. He kind of discouraged me about getting the test results. When I went in to collect them and when he said yes, “The test results are positive,” that I was positive HIV, I was shocked, I was not expecting that. I think I was beginning to suspect it when he was trying to give me that last chance of not finding out. He did all the right things, he gave me some time to let it sink in, asked about my support system, offered me information about where there were support groups. I was living in rural Connecticut at the time, and I would go back and forth to New York as needed. There was no support in rural Connecticut, and I just sort of sat there and I don’t think I had a whole lot to say.
I remember I was joining some friends for dinner that evening, Howard Cruse and his partner Eddie Sederbaum. Howard cartoonist, illustrator, author, fairly well known in the gay community. I think some time ago said that I might be a little distracted because I get my HIV results that day, but of course that had kind of slipped their minds. I remember leaving that place what the weather was like, I don’t remember what I did to kill time between what was a late afternoon appointment till going out to Howie and Eddie’s in the early evening. Of course just staying very very distracted, going through all the social pleasantries and having a nice dinner and visit together and they had completely forgot that I had made that appointment. I was just about to leave and I dropped it on them, which they were not pleased about. I think part of me was tempted to be nonchalant about it. Of course my mind was elsewhere that entire evening and still very much in shock. I think it was very cruel of me to, as I was getting my coat and leaving, say, “By the way I tested positive.” Of course they were tremendously supportive, but I was still stunned by it. Even before I made the appointment I thought, “Okay, I’ll test negative and then I’ll go do something and have dinner with Howie and Eddie.”
I decided as many people still do to keep it very much a secret. You know, most everyone did not know what my status was because I was afraid of how people would react. I was afraid of losing my job, I was afraid of discrimination in my face, and I also remember when I went back to my regular doctor, he said, “Be very mindful of who you tell because you can’t untell someone.” I thought that was a very important piece of advice that I really thought about a lot. I had no support as far as where I was living. No one around me where I was living knew, the person I was living and working with had lost his partner to AIDS which was how I ended up working with him and my it was my choice not to tell him. I sort of sensed there was still quite a bit of fear unnecessarily around contagion and HIV. Things didn’t feel differently, I didn’t feel different, so there was no reason to tell anyone else. So I did keep that very much secret. A couple of times later on that relationship became sexual. I really made sure that I was doing what I felt was safe. But still I didn’t tell him and I felt very awkward about that because it came back to haunt me. I allowed us to become to sexual from time to time and did not tell him, even though I felt that whatever we did was safe and he did get re‑tested and tested negative.
After I was diagnosed he became scarcer. I was originally supposed to move into a little guest quarter on the house but I ended up living in the main house, and really became his major domo. I think was in some ways a kind of paid companion, but I had my own little room and I had the run of the estate in Connecticut and there was a townhouse in New York that I had access to whenever I needed it. When I was diagnosed and I finally did tell him, all of sudden there were these trips to the West Coast and to Europe and all of a sudden he was hardly home anymore. There are also small examples of fear and prejudice. He suggested that I use the guest quarters on the fourth floor of the townhouse in New York and that way I’d have my own bathroom and tried to insinuate it was for my own comfort. Usually I’d use his room if he wasn’t in town. He had a king sized bed, even if he was there we could still sleep and not sleep together. There was never a problem before.
The one thing that really got me is there was this guest house on the property in Connecticut, and there was this couple that used it fairly regularly. They had a small child and Mary was pregnant with her second child at the time I was diagnosed, and shortly afterwards she gave birth and a few weeks later they had come back to use the house again. So, I pulled up the driveway once and I saw that the car was in the drive of the guest house so I pulled in and knocked and I said, “I’d like to see the baby.” And, [the dad] said, “The baby’s sleeping right now.” Meanwhile the vacuum cleaner’s going on in the background and my looking at the baby’s not going to wake the baby. The next day back in New York Michael, whose property it was, said, “Tom we’re not so sure about baby’s immune systems right now so why don’t you stay away from the baby right now.” He bought right into the fears and I think that was when I knew I’ve got to find a way to get myself out of this situation. If he had pulled me aside quietly and privately, I might not have liked it but I could have understood it. I visited maybe once or twice after I moved out. He, at one point, said, “I hope you understand or know where I’m coming from or why I did some of the things that I did,” and I said I think that I did, and I do. But, it still hurt, and I think since then I’ve never really been back down to visit. I was given a nice place to live but I did work for my meager salary.
So, that was a big decision to say, “I’ve gotta get out of here.” I moved into the apartment of my best friend which was a walk‑up on the lower east side with a shared toilet, and I was so glad to be there. It really was a cockroach infested little hole of a place and that’s where I needed to be. When I decided I needed to stop teaching and get out of New York that was probably the other biggest and most difficult decision that really changed everything around how I was living and what my future plan had been and was developing to be. So, I went away and said New York kind of got the best of me and that was hard because in many ways it’s one of the greatest places in the world. It also can be one of the most awful places in the whole world.
I was diagnosed with Kaposi’s …. the lesion was discovered by my dentist. There was a spot removed from my mouth and again this was out in rural Connecticut. I knew that I was HIV positive, I chose not to tell the dentist because god knows what I would face, so he says, “I don’t really like the looks of this spot.” And I’m sort of beginning to sense there’s something he doesn’t like about this, something he’s not saying. I’m not saying that I’m HIV positive, so I’m not saying anything like, “Are you thinking what I’m not wanting to tell you?” Just a whole lot of not saying and not thinking or not saying stuff around this particular thought. So I go back into my regular physician, this guy whose now allergies and immunologies practice has turned into something that he never expected it would and of course he knew my HIV status. He looked at it and he said, “Yeah, this looks like it could be Kaposi’s,” and scheduled me for a biopsy to a dermatologist for the following day. So, the dermatologist removes the lesion to send off for the biopsy and says, “The results are going to take about a week to ten days.” And I said, “God, a week to ten days, do you think we could put a rush on this, I’m a little anxious about finding out these results?” She says, “I guess we can.” She writes RUSH on the lab report and I’m thinking maybe it will be two, three maybe four days. My best friend happened to be in Thailand at the time, so it was great when it was two in the morning here on the East coast it was two in the afternoon in Bangkok and I could call David in Bangkok and explain to him what was going on. I’m waiting, I’m worried, and I get some support, and I thought, “Okay, if this test does come back positive meaning I have this kind of cancer and I have AIDS, I’m going to go visit David and stop in Tahiti on the way there and back and I’m gonna go down first class and gonna run up the credit cards like I’ve not seen before.” While I had these days I sat around by myself mulling over what I am going to do if it comes back like this. It ended up taking almost two weeks for the results to come back in and that time was real hell for me. I remember a couple of times there were a couple of shots of Jack Daniels at eleven in the morning before I picked up the phone to call the dermatologist’s office. The first time I called I said, “Well, you know we’re waiting for these test results to get in,” and they said, “Dr. So and So isn’t in today,” and I said, “I know she’s not in today she said she wouldn’t be but are the test results in?” “Well, Dr. So and So isn’t in today.” Really insensitive people. So I called up my primary physicians nurse receptionist and she said, “Tom where are you I’ll call you back in ten minutes.” In that time she called the lab and when she got back to me, explained what a frozen section was and really honored what my fears and concerns were about that. I really appreciate that she did that. It still took way too long. But I remember when I did sit in the office and she came in and said, “I’m sorry to say that it’s Kaposi’s,” I like to put a little [Gary] Larsen cartoon in‑‑”What dogs really hear and what cats really hear…’Blah, blah, blah, Tom, blah, blah, blah, blah.”‘ I knew what it meant but I also sat there thinking, “The pulse is there, and I’m tiring a little more easily.” And, for whatever reasons, it dawned on me that I was living with AIDS and that there may well come a point that I was dying from it. I think it took me a while to figure out there were issues around why I didn’t run up the credit cards, which sometimes I regret, but I think that would have been panicking preparing to die and I don’t think that I was ready to do that. I don’t have any idea why that kicked in at that moment, no idea why it kicked in then, but it did.
I kind of stumbled across the Quakers quite accidentally through doing public speaking about living with HIV and AIDS. A close friend of mine, the woman who I took to the high school prom, had become very involved with Quakers over the last number of years and we’ve maintained a friendship over the last number of years as well. And, she invited me to speak to their youth group about living with HIV and AIDS, so I did. I took up the invitation and there were probably only about three young people there and my friend Colleen, and I think it went well and then afterwards she said, “You know you’re welcome to stay on for the meeting.” Which she explained a little bit of how it was set up. This particular Portland Friends meeting is an unprogrammed meeting, meaning there’s no minister or pastor. We sit in silence until, unless someone … and very often someone or several people throughout the course of the meeting get up and feel they need to share something, but otherwise it’s sitting around in prayer or meditation. She explained a little bit about what that was and I said, “Sure, why not.” When I got into the room, I looked about and I thought “Oh, I know this person and I know that person and I know this one’s doing good work in that area and this one’s very involved with the social services with the city…” My prejudices against many organized religions was that I felt many people would go to church on Sundays talk about how wonderful they are and then during the rest of the week living not quite that way. This was the exact opposite. I’m looking around seeing people who are living lives of being in service, and not talking about it on Sundays, [but] sitting in silence. From that point I started attending quite regularly and have been attending now for many years. It did surprise me that I found myself so comfortable there because I’ve gone to other places of worship like the Unitarian church which I think is wonderful and very welcoming and affirming, and I think it still carried that vestige of Catholicism and the ritual that just didn’t sit right with me. Even though there are many many wonderful people who are part of those communities and I’ll still go to service once in a while, it just never felt particularly spiritually nurturing to me.
Over this last year or so I have become more involved in attending other meetings other than meeting for worship and meeting for business as I contemplate taking membership there. Right now I’m attender, but not an official member. One of the things that just happened very recently, this last week, was that I had my first clearness committee meeting. A clearness committee is a Quaker tradition. When one is making an important decision in their lives, and usually it’s around taking membership, or marriage, or divorce or some other life crisis, the meeting will offer to set up clearness committee‑‑meaning that several people get to sit with you and help you find your clearness around that particular issue or decision. So, about six months ago, I should say it also seems to be another frustrating Quaker tradition that things take forever. About six months ago, I was wanting to approach them about doing a project with photography. I was thinking that I’d like to do this project of photographing the people in meeting, perhaps getting a little bit of their histories. One Sunday I was very just quite moved at that point to say, “Okay this is it, I’m just going to ask them. I’m going to see if I can get this on the agenda.” I hadn’t planned that morning when I left for meeting to stay for business meeting or put this on the agenda. So, I did. When I spoke a little bit about the project I had in mind, one of the co‑ clerks said that, “I think this might be more appropriate for the ministry and council.” I didn’t quite understand why but I thought, ‘I’m not quite all that versed with the ways of Quakers,” and, “ministry and council’s meeting, oh, a week and a half later.” They invited me to bring some of my work and talk about what I had presented there. I brought in my work, and I spread all these portraits all around the room including some of the OUTRIGHT youth, and talked a little bit about my own history as an artist and a photographer, and the co‑clerk, Harold Burnham, who had suggested I go to ministry and council, I think he got it better than I did. He said, “Now this is something much more than a project that might benefit the meeting or might benefit Tom or might benefit both, this is Tom’s calling, how can we help him with it?” And, 1, I went “Wow” too, and so they offered to set up for me a clearness committee about where to take this. There were a couple of people I would have liked to have been on it and there was one other photographer there that I thought would be a good idea to have on the committee. He was asked to chair it, and it just kept failing through the cracks, failing through the cracks, failing through the cracks. Finally someone else on ministry and council just barely a couple of weeks ago said, “Tom I’m just, I’m going to make this happen.” So, she called up a bunch of people and asked someone to convene and oversee the actual process of the clearness committee and we met the first time this last Wednesday. It was really quite extraordinary. We have a diverse group of people, I think there are five of us, not including myself, so six all together. The way the clearness committee works is that we sit in silence, or prayer, or meditation for however long I choose or feel the need to do that, and then I get to speak my mind about whatever it is that I want to bring up before this committee. It’s their job to just listen very very carefully and when I feel that I’ve finished saying what I’ve needed to say, then they might offer their input, their experience, questions that might help them understand better what I’m asking. I found it an extraordinary experience. 1, for this first meeting, was really struggling, what were the questions I needed to ask this committee? We have some clear projects out of this so far and still looking into the bigger issue which I think was hit upon around the concept of bearing witness. I think that the problem/the issue I need to find my clearness about is, “How do I find a way to live as an artist that is spiritually connected and also have that work be supported, and have it be financially rewarded in an appropriate way that values not only my materials and time, but also my experience and my particular vision?” That’s the hard part for me, the business aspect. So I think this is going to be very helpful.
I think traditionally teachers, social workers, people who really feel in their hearts this is good work they’re doing and they need to do this work, often don’t place that monetary value on it and let themselves be undervalued. I think that it’s especially true of artists. I think a big part of [acknowledging photography as my life’s work] happened because of my diagnosis and because of not having to do something merely for the financial remuneration. I got more involved with AIDS work, I thought I would do this until I died as so many of my friends did. Then I kept on living and I kept on living, and I kept on living and became kind of confused. Now what? I know that the work that I did was important and that I needed to do it for myself as much as for the larger community, but there came a time when that was no longer as satisfying to me. I think it was a way of dealing with my anger around being diagnosed, of other people being diagnosed, the whole epidemic. After a while I started wanting to get back to my art. It was when, I think, I saw my friend June look at my photos and turn pale because so many of those people had died, it’s when I saw the comments in the comment books after exhibiting them, getting the feedback, that I really trusted in my heart of the effect art can have and how it can move and change people. I think I also began to really feel, rather than think and understand, my need of doing this. When I was painting, I remember hearing other artists saying how they really needed to do that and I think I pretended I really needed to do that, because that’s the way it’s supposed to be if you’re a true artist. That began to happen with the photography. I really needed to do it, and I would do it, and have done it, without being paid for it because of my love and my passion around it. I think that is where I began to understand that, at this point this is what I need to do. If I never made another penny from it that would be fine for me, I manage to live, I squeak by and I think that’s how I know for myself this is my calling.
I think it was always there and I kind of denied it. I painted very realistically, would use photography as a reference a lot. I think I always also thought, “Well, there is painting and sculpture at the top of the pyramid of the great art forms and then there’s maybe photography under that and then there’s crafts, ceramics and basket weaving.” I call that my internalized photographobia. I think it took me a long time to move from knowing in my head that photography is as valid an art form as painting and sculpture to knowing in my heart and trusting that. I think there’s a number of reasons why it became so important to me. One is because of my diagnosis. One of the things I grieved about myself was that I wanted to see where I would develop as an artist when I was 50, when I was 60, when I was 70, and that didn’t seem like I was going to have that opportunity. I felt I could get a lot more work done as a photographer than as a painter. As a photographer, I could develop my vision and I could take literally thousands of photographs over a couple of years and see where that vision changes rather than making half a dozen good paintings every year. So, that was a piece. Another piece is around my grieving and my losses, having taken photographs of people who have since died, I often feel more bereft if there is someone who had died who I didn’t take a photograph for myself. That’s my way of keeping a piece of them, keeping a piece of them alive, helping to share their stories. So, it’s a big part about dealing with my own personal grief.
I’ve been here for eleven years now since the diagnosis. I think at the time, for my age group, for my particular T‑cell count, my particular diagnosis, I think that the mean average was 18.5 months, and I’ve kind of exceeded that (laughter). As better medications come along, I’m doing well, I’m not doing well, and then I’m doing well, and it’s still up in the air. At this point, and probably any given point, I can kind of trust in maybe a couple of years ahead of me. There have been times when I couldn’t even trust in that. So, it’s hard for me to trust in anything more than a couple of years away, and yet I’ve had these eleven years behind me that confuses me. Where do I juggle that balance of trusting a future of more than a couple of years and also being ready in case something starts going badly? A lot can happen in a couple of years, and if it’s cut short I’m still tremendously grateful for the opportunities that I’ve had, and life that I’ve led so far. I think that I have tried to live my life since my diagnosis in seeking out what’s fulfilling and nurturing to my heart and my soul. And, not not‑positively. How can one maintain that intensity for so many years, but I think it has probably given me a perspective that many people don’t reach until their later years. So there are all sorts of exciting things for the future, some of which I can trust in, some of which I can dream or fantasize about, but there are some practical pieces I think I can get done, particularly around my work.
Very, very early in my diagnosis I went to all sorts of different workshops and seminars including Elizabeth Kubler‑Ross workshops. I think the most helpful piece of that was to discover that those steps do not necessarily come in order, that they can come back once you’ve been through those steps, that they can get jumbled around, and I think that’s very much happened with me. I think I still go through my share of bargaining, my share of denial, my share of depression, and my anger, and even at times acceptance. In the Elizabeth Kubler‑Ross workshops that were set up, there were three major experiential exercises that were offered. One was beating the shit out of telephone books, and I think that this was all called mat work because you’d be lying on or sifting on or kneeling on mats, and that was by far the most popular. There’d be wails that would come out of people that were from the depths of their souls. I tried that a little bit it just didn’t work for me. Another exercise was to either cuddle or hold very tenderly a pillow or teddybear and address someone with a great deal of tenderness. Again, for some people it would bring out tears and just amazing stuff, it didn’t do all that much for me. But there’s another piece where you would lie on your back and wrap up a towel that would be above you and then start tugging on this towel. That’s when I felt my wail and really crying out. I think what that was is, because of having had so much taken away from me, so many people, my sense of future, that I was holding on to everything that I considered mine including my grief, including my sadness, including my anger, because it was mine and I didn’t want to give up. I found that a very very enlightening piece of that work, and I think still think about what it is I hold onto, what are the pieces that are actually healthy for me, and where are the pieces that I can let go of, and where are the pieces I can’t?
I started going down to the Fenway health center because we’re still working on new combinations. Viral‑load has been rising but I’m also more confident about advances and more confident about puffing myself in the hands of a really terrific clinic and program down there. I feel all right. The cancer’s been under control, but I know things can change. We’re doing the best we can, for the moment doing okay, keeping things in check.