Interview with Gordon Waselnuk

18-05-01-GX.docx “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 1 “HIV in My Day” – Interview 29 May 1, 2018 [Follow-up Interview on May 10, 2018] Interviewee: anonymous (P); Interviewer: Ben Klassen (BK) Interview anonymized at participant’s request Ben Klassen: Thank you so much for being here and sharing your story with us. Just to get started, how did you first become involved in the gay community or start engaging in gay life? Participant: In gay life? Wow. Well, I knew from a young age that I was attracted to guys, and I had a friend in high school – he was very tough guy and very – he didn’t care. He bleached his hair blonde, people were making all sorts comments and laughing, and he would say, “Go fuck yourself.” When he was seventeen, he ran away from home, he came from an abusive home, ran away to Toronto. In Toronto – there was absolutely nothing in Ottawa – but in Toronto there were a few underground clubs and they basically paid off the police and that was back in the 1960s. He invited me to come to Toronto and when I came to Union Station – I was like seventeen, maybe I was eighteen then – I noticed when I saw him, I hadn’t seen him in several months, I noticed he looked different. He was all tanned, he was wearing tight clothes, tight white jeans on, blonde hair all bleached, and he said, “I have some friends. They are waiting for us in a car. One of them is my roommate, and you are going to stay at my place.” And I said, “Oh great,” and then he looked at me and said, “By the way, they're gay.” And I kind of froze and said, “What do you mean they are gay?” And he started laughing, he said, “Yeah, they’re gay, like you, like me.” I said, “I don’t know,” I had a mixture of fear and excitement. He said, “Get in the car and shut up.” He was like a mentor, he brought me out. That night I went to my first gay club, a mixture of fear and excitement. And then a year later, I moved to Toronto. I moved because I felt – I came from a family of four brothers, my father and my mom. My mom was kind of my protector, she was my protector. My father was, in retrospect, he wanted – he was concerned about me. He thought that I was going down a path that wasn’t healthy, that wasn’t – that I would be unhappy, and all that, all those myths. He tried to talk me into staying in Ottawa, and also, he had a problem with my – I remember when I was really young playing with dolls and occasionally out skipping with my girlfriends in the street, he had a problem with that. One time I couldn’t find… My mother didn’t have a problem with it and they would fight. I had this really, I think it was a Barbie doll, gorgeous blonde hair, you know, and it went missing and I kept asking my mother, “Have you seen my doll?” And I found it a few days later – we had this cellar, it was at the bottom of the cellar steps with its head ripped off. Can you imagine how that felt for somebody? Like, I was probably ten years old, maybe even younger. I couldn’t figure out – I knew something was wrong, but I couldn’t put words to it, and my father never talked to me about it. I could hear my parents occasionally arguing, but I didn’t understand, but I knew something was wrong. Here I was – how am I going to fix this doll? All we had was this black hockey tape, so I had shimmed it up. Can you imagine a Barbie doll with black hockey tape? Like, how Canadian is that? Like wrapped around her neck. That is all I could find. I was picked on in school occasionally. I was afraid in high school, but this friend, he was my protector, and also another guy joined us at our little lunch table and a year later, he also came out, and all three of us were friends. He ended up living in Montreal but we used to go visit him. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 2 It was kind of funny, because in high school we didn’t talk about it, maybe we didn’t know. So, I moved to Toronto, I got out of town, and in some ways it was good. It got me out of the nest at a young age and made me more independent. And those days, there was work, you could find jobs pretty easy, but I didn’t have any real skills. We ended up working for the same company, this friend of mine and I, and he had this older boyfriend, so I lived with them. The older boyfriend liked it, ‘cause I was supposed to be – cause this friend of mine liked to go out partying and clubs and the older guy, who is maybe ten years older, he wanted to stay home, so I was kind of the guardian, so to speak. I don’t know if I did a great job ‘cause we used to go out and occasionally get high and run around – that is what teenagers did – and went to New York. I remember we found this cheap flight to New York, went there the two of us to Stonewall. This was the year of the riots, actually, I remember distinctly. I remember walking in, like, oh my god, they had these juke boxes – they didn’t have a DJ, they had juke boxes. I remember there were two rooms with juke boxes, and there were these black people dancing to Aretha Franklin, like that song “Think,” and they were singing along. That was the first time I had heard Aretha Franklin and it was like, wow, this was like really… They were tough, the riots – the people that were rioting, they were tough – street people, drag queens, those were the people that were frequenting that club and that area. I came back, I got involved, I met this guy – maybe I was about eighteen, nineteen – fell in love. He was a young activist and he was a student at the University of Toronto. He brought me to this homophile society, this meeting, and he told me that this was the first meeting in Canada, this is the first meeting. U of T were more open, other universities weren’t, and so him and a group of people, they started this homophile society and they asked if they could have a dance at Hart House, and that was the first dance at a university in Canada. And so, a group of us – I was kind of just dragged along, because I was with this guy – I always get dragged along. A group of us thought, at other universities, like Waterloo – there was several universities – that there were queer people who came to Toronto, and said, “We would like to have this at our university, but I am the only openly queer person, and nobody will come to the meeting.” And we thought why don’t we go as a core group to Waterloo, and these guys said, “We will put you up.” And went to a regular dance and at a certain time, there was maybe a dozen of us, we just got up and started dancing together. And we had mixed reactions ‘cause we did it at Ryerson, we did it at Waterloo, we did it a Guelph, we did it at four or five different that I remember. We were – sometimes people would laugh, sometimes they would ignore us, sometimes they would get violent, throw us out or even throw rocks at us. There was police entrapment happening, regularly police entrapment. They would come into clubs, turn on the lights, and come in, and everybody would just stand there. They would walk around, occasionally take someone and leave with them. There was also entrapment in washrooms, people would warn us. There was The Body Politic – I was around at the beginning of that. A friend of mine used to work there. But at night, after the clubs, they would be out there with their Body Politic, selling or giving it away on the street, hot off the presses, and they would warn us, avoid this washroom, avoid that washroom. They were usually subway washrooms, so the – it had an edge, it had kind of an underground, sneaking through an alley… There was this excitement, because during the week, you weren’t allowed to express yourself, you had to be closeted. So, let’s say on a Friday or a Saturday night you would go in to this dark alley or nondescript façade, there were a few bars where – there was the St. Charles, that they just took “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 3 over a certain section. There was this excitement – you would go in and it was like, a lot of sexual tension, because it was taboo, you were doing something really kind of underground, like illegal. The police could arrive at any minute. Beginning of the AIDS epidemic had the same feel, us versus them and a lot of sneaking around, a lot of camouflaging, lying, making up stories. It had a lot of polarities – gay liberation and the AIDS movement had a lot of discrimination, fear, people worried about being exposed, people – the same thing, threats. Premiers wanting to quarantine, threatening to go into doctor’s offices and just opening files. Health ministers blaming – can you imagine a health minister, here in BC, Vander Zalm's health minister blaming us and saying it was our fault? And there was an archbishop who had a lot of influence on St. Paul’s – I know from being around at that time – Archbishop Carney, who was a personal friend of Vander Zalm, and Vander Zalm and Archbishop Carney were personal friends with the Pope. Can you imagine? He had a lot of control over the sisters of providence, they were under him. There was a lot at the beginning that went on at St. Paul’s that wasn’t pleasant – homophobia, there was stuff going on. And we had our little allies – social workers, some doctors – that would say this is what is really going on. There was this underground thing happening, like we had our secret allies, they would say, “Don’t ever say that I told you this…” But it had a similarity to the early queer movement. In like, let’s say back then, in the day, in Toronto, if I was walking down Yonge St. and I saw somebody from the club and they saw me, it was common – even though I spoke to them at the club, it was common not to acknowledge them. It was common because there was this fear, especially if one were a little more effeminate. Or if you were with someone – I remember I was with my mother, she was visiting, we were walking down Yonge St. and this more effeminate man said, “Hello,” and I just ignored him and as we walked past. My mother said, “This girl is saying hi to you,” and I felt like saying it’s not a girl mom, it’s not a girl. There was this fear. Same with the AIDS movement. People were losing their homes, their jobs, couldn’t get a mortgage, couldn’t get insurance, getting thrown out of their apartments – it was really, really bad. St. Paul’s – I spoke to a nurse, he was part of our community, HIV community. He worked at St. Paul’s – they formed their own group but when Archbishop Carney found out they had their own meetings – they were given permission by social work to meet – when he found out, he through his influence, they were told there’s no more room, yeah. They ended up meeting at one of the more open churches. There were a few churches that were more open and they found out later that Archbishop Carney – this is what they heard through the grapevine by somebody who worked there, they told them that when he found out, he was angry and he said, “Don’t allow this group to meet. We don’t want the church to look like we support this type of behaviour.” Can you imagine? These are workers. They call themselves a family – yeah, family, if you pray a lot, I guess. They wouldn’t allow people to use the chapel for services, they wouldn’t allow information on condom use, they wouldn’t allow that – can you imagine? They actually – I grew up Catholic, so I have a right to bash them. The Pope at that time went to Africa several times telling people abstinence is the only way, no condom use. He actually created – he was part of the group that actually created a terrible epidemic – it’s pretty disgusting. We had to deal with all of this, threats, and sometimes it was like surreal. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 4 Have you met John Kozachenko? Did he tell them about the time that Bill Vander Zalm was at a fundraiser at the Queen Elizabeth Theatre, and he ran and ended up falling, and Bill Vander Zalm’s wife fell on top of him? And the irony – here is the irony – they went to this fundraiser, they brought in Dionne Warwick, and she sang, “That’s What Friends Are For,” as people were arriving. Do you know that song? It’s a song about loving and caring and helping. Elton John is the one that wrote it. So much irony. I came out very early as part of gay liberation and it had like an edge, it was underground, you didn’t really talk about it. I didn’t talk about it with my family – I guess they didn’t want to hear about it. I had an older brother and my father, they just didn’t want to hear it. They avoided me actually. I had one brother who was more open but another brother who was religious, so – but anyway, basically, told us when I went to elementary Catholic schools, I mean it was like a sickness, you are going to hell, you will never have a happy life, you will never have a healthy relationship. This is what I was listening too. You are mentally ill, I was told that actually and I was even discriminated by some teachers because I was this androgynous… In high school, I started growing my hair longer, I was more pretty – well, you saw that photo. I was threatened, I remember some guy tried to kick me once – he missed, thank god, I was never bashed. I was threatened occasionally, and it scared me. I even had teachers in retrospect, there were some macho teachers that didn’t really – they weren’t caring. I didn’t do well in their classes because they were homophobic. When I look back – and in those days, it was the ‘60s, there wasn’t really any training, no. Teachers were – I remember the gym teacher, he was a sexy guy and had a mustang convertible. He was like a real jock, he would date the senior high school students, the women – can you imagine? My dad would drive around town, or we would go to the cottage, and he would be sitting there with a cigarette and a beer driving to the cottage. As long as it was in a paper bag, the police were okay with it, and we would be handing him beer – he had a case of 24 in the backseat – we would be handing him beer as he was driving off to the cottage. It was back in those days, there wasn’t the – like now, everything – we have all of these rules and regulations. Back then, it was who cares? It was a different time. It was a real different time – actually, you didn’t have seatbelts. All the kids in the backseats, who cares? It was real different time, but it was… The drag queens, they were tough. They – some of them would hustle in the street – they had to be tough and funny. I remember Craig Russel – he was famous, kind of, he would interpret all of these stars. He was really, really good. He made a movie called Outrageous, and in Berlin, he won best actor, at a film festival – it is an old cult queer film. We didn’t have – in those days, you didn’t see any in the media, so when anything came along, like with any queer content, like Boys in the Band, it was so, like oh my god, everybody talked about it and you gotta go see this film. But when you got there, you were worried – who’s… is there anybody around, any straight people? You were paranoid. BK: Thanks for all that. It is a lot of context, it is important as it frames our discussion. How did you end up in Vancouver? P: I dropped out, became a hippie, and four of us, including my friend who left his boyfriend… I was dating this guy who had a van. He wanted to go to Mexico, middle of winter, so four of us – three guys and a woman – we were about nineteen, maybe twenty – drove all the way in the middle of winter from Toronto to the Guatemala border. It was crazy. We had long hair and we “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 5 were worried that they wouldn’t let us in, so we bought these wigs somewhere in Texas and we thought, oh we’ll just wear these wigs, they won’t notice. So, all three of us show up with these – you looked like something from the 1950’s and they were – to keep them on, we had bobby pins. I remember the border guard saying, “Take this off.” We said, “It’s not a wig.” Then he tried to rip it off our heads, and it was ah! – it hurt like you were trying to rip this wig off. So, we ended up paying money to get into Mexico. Back then you bribed people. Yes, we spent a few months in Mexico, living on beaches, living simply. My friend, his mother sent him – or his lover sent him his – we were running out of money, he sent him his tax refund, it was like a cheque. In those days they didn’t have bank machines. Nobody would cash it, this cheque with a big maple leaf on it, so my friend said, “We gotta go to Canada, we gotta go direct to Canada.” We left the group and stopped in LA. They wanted to go back to Toronto, so the two of us ended up in LA – “let’s just see if we can find some work,” and we ended up working in a porn shop. And every hour we had to go out on the street and tell people that the movie was starting – back then, it wasn’t video, it was reel to reel. We had to go out in the street and say, “We have a great film,” and maybe show them a picture. “It is starting in 10 minutes. It’s only two dollars.” Then we were selling all kinds of stuff – dildos, and crap like that. It was very sleazy actually and we lived in a motel off of Sunset Boulevard, all these hustlers on the streets – it was pretty sleazy actually, exciting. Then we took a bus, Greyhound up to Vancouver. We stopped in Portland and Seattle, and ended up in Vancouver, and yeah, with no money. Well, he had his cheque that he could cash finally. We lived on Seymour St. – we called it Seymour slum cause it was a slum, it was a real slum. It was an old house, the floors weren’t level – they had a slant to them – it was a shed. Our apartment was the back of the house, it was basically a shed and we had to keep the stove on to heat the place, there was no heating. We put the stove on and opened the oven – it was a gas stove. And that is where we lived. And I went – in those days they had Manpower – back then, it was the beginning of the 1970s, there was lots of jobs actually and I guess the economy was doing well. I remember going to Manpower and saying, “I don’t have any skills.” I heard that they would maybe give me some training, so my friend and I both went and they put us on a special, I guess EI? They didn’t call it EI then, and we went to hairdressing school. They gave us a choice, so we thought this is where we belonged, hairdressing school. Maybe they suggested it, I can’t remember. Here we were in hairdressing school. This friend of mine, he was very funny, very witty, he was a character, he was very smart actually, but very – came from a rough family. His father used to beat the shit out of him – he was a tough guy, he had to be. I remember him going to school and he would bleach his hair and then a week later he would dye it black and everybody would laugh. Like, he would walk in the door and the teacher would look at him and ask, “What the hell have you done?” And he would say, “I fell in a mud puddle on the way to school. Just give me a break,” like shut up. He was very tough guy, but that was what I needed – I needed somebody like that in my life, he would be just shut up and do it. We lived in a slum, we called it Seymour slum and it was a slum. The bedroom was – like imagine sleeping on a bed, it was just a double bed, we had to sleep together. All we had was a shack, a shed in the back of an old house, has been torn down years ago across from the penthouse. I went to hairdressing school, he did too, but then he ended up making – he went back to Toronto. Him and his old boyfriend ended up getting back together and so just over night, yeah, “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 6 he announced to me, “I’m going back to Toronto. I’m going back and living with my boyfriend.” And that was really hard actually, ‘cause like I said, we were really close, I depended on him. I didn’t realize how much. It was very difficult when he left. I had a mini breakdown, not serious, but I was very depressed. I asked – I told my doctor I was really… I don’t know, I had a hard time being alone. Like, we grew up together – it was almost like a relationship, a love relationship even though we were in contact. It was very very difficult, it happened very fast, so my doctor said, “Maybe you should go see a psychiatrist.” You know, this was back in 1974, maybe ‘73. It was this office in the West End. I walk in and this woman receptionist is there and says, “I want you to fill out this application.” And after she is reading it – it is all about my personal life – she goes like this, “Oh god, you say on your application that you are gay.” I said, “Yeah.” She said, in a psychiatrist office, 1973, she said, “He does have part of his clients are gay boys,” gay boys, “and they always seem to fall in love with him. So, I am warning you, like, please don’t fall in love with him.” I said, “Okay.” I walk in to see him, he is sitting behind a desk looking really pompous smoking a pipe, looking at me and like, “Okay, sit down and tell me your story.” It’s kind of like – I thought this isn’t going to work, it’s not going to work – this guy is a fucking idiot. And I went to another psychiatrist and this guy was crazy but he was also interesting. No, this was actually years later during the AIDS epidemic. He had an atrium, he had an office in a warehouse with a high ceilings and birds flying around – exotic birds. The thing is, I found out if you want to see someone quickly, you end up with the crazy ones. If you want to wait for a long time then maybe you will end up with a more sane… yeah, but this guy was cool. He was saying – he asked me where I lived, and I lived near Stanley Park. He said – I had a lot of anger then. This was at the height of the AIDS epidemic when my lover, partner died – I was really suffering, on an emotional roller coaster. He told me, “Go walking in the park.” This was in the winter – “Well, it’s raining.” He said, “Who cares? Take off your shoes, feel the mud on your feet, just kind of be in nature, feel the ground, feel – and if you are feeling really angry, walk more softly, more gently. If your mind is scattered, really feel your feet.” At the time I thought this is too much out there, but years later I got into yoga and meditation, I realized, wow, this guy was ahead of his time, he was really very kind of alternative but in a good way, in a very good way. ‘Cause I realized that today that really is a pretty good thing to do. That was years later, so I’ve kind of – I found other people who… There were – groups of us went for therapy, groups of us went for acupuncture. They used to have us all lying on the floor, running around sticking needles in us at BCPWA, when it was called BCPWA. They had therapists who offered – I think they got funding, but they offered groups to make it more accessible, more affordable, and if you were really suffering, then they would see you privately, but maybe there was a cost involved and they had to, you know… So, that was after my lover died. I did go to see this woman and she was a very – in retrospect, I realized she was very good. And she worked out of her home, it was on the west side, and she had groups and she did these exercises with us. And I remember one – there was maybe a dozen of us – there was one exercise when she said, “I want you to line up in the order that you think that you are really attractive and sexy.” You know, in the gay community you are more fuckable, and the weird thing was, everybody lined up exactly how I pictured they would except the last two were fighting with each other. They were saying, “I’m not last,” and they would say, “You are, you are last.” It was very interesting – very quickly lined up. It’s almost like people knew “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 7 how attractive they were in the so-called gay community – their attractiveness, it’s kind of interesting. Very – I think people, they just maybe they know, this is where I belong, behind this person, in front of this person. She helped me – I saw her privately. I was – needed help, so I was… I had a lot of anger and that anger was fuel for my volunteer work. Anger has an energy, like when you are really angry… I was really angry. It brought up my lover’s death. We were together fourteen years and we spent a lot of time alone. We lived in Australia, worked there, we lived in Hong Kong together – we were both hairstylists, international hairstylists, and we worked for sometimes the same company or different companies. We did stuff like magazine, TV, occasionally film work, just backstage. You know, worked on these gorgeous models from Christian Dior, Pierre Balmain – they would come from Europe, they do their big shows in Paris, Milan, big runway shows. Then they make them smaller and take them on the road and a big market for designer clothes is Asia. These very wealthy women – you see them around Vancouver now – they have the money and they… So, they would have, say, Singapore, Hong Kong, Japan, and they would have these dinners, in these beautiful hotels and with this show. It was a way of promoting and I would be backstage working on some really sometimes famous models. And they would have trade shows where buyers would come from all over the world, ‘cause Hong Kong is a major – they called it ready to wear. They have all these factories, it’s a little more high-end clothes, like the better stuff, ‘cause the people there are more skilled in doing better quality, and then they would have big trade shows that would go on for four or five days and we would be backstage. Sometimes very big shows – I remember a show where they had a symphony orchestra that had created a special piece for this show. And they brought in some of the top models. You see, what they do is spend a lot of money, they buyers come and they spend a lot of money on this, especially opening night – bring in the best, spend a lot of money, bring in top models, so it makes the clothes. The more money they spend on the orchestra, the models, the whole spectacle, it makes the clothes look more expensive. Meanwhile, I have been in factories in Hong Kong where they are just putting the clothes in one of those things, and it is neon lights and people working on machines, and it’s funny, clothes don’t look so glamorous. And then you get to Europe and you are walking by a store and you see the same dress in Paris or Rome but it is on a beautiful mannequin, with flowers – it is just all about the presentation. We worked, so we were very close. Sometimes we didn’t know anybody. We would get to Australia – there was only the two of us, so we depended on each other. He was my closest friend, my person who I could be more vulnerable with, most vulnerable. Our families were thousands of kilometers away – he was from near Quebec City and I was from Ottawa – and plus they didn’t totally accept, they just – and we kind of complied by just not… They knew we were together but we didn’t make a big announcement out of it, even though when I went to visit, eventually, after so many years visiting his family or he visiting my family, they were friendly. My father wouldn’t say anything – he didn’t want to talk about it but he was friendly and caring, and that was - I guess we just accepted it, that. And occasionally – my lover was more androgynous-looking and occasionally people would yell at us from cars, “Fucking fags.” Actually, yesterday some crazy person, he wasn’t talking with me, but he yelled “Fucking faggot!” It’s still – it’s kind of funny, it’s still out there, it’s still… You wonder, back when my lover and I were together, it was more like occasionally people would yell from cars, they would make comments, not often but occasionally. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 8 So, when he became sick, that was in 1989 and eventually he died. He died in 1990. I didn’t realize it but all this time, all those years that I had just kind of allowed people… Like, even doctors, it was I was kind of – we started out with one doctor and ended up with a dozen specialists, but I was kind of like – for some of these doctors, I was his friend. I would introduce myself as his partner or his lover, but I would be designated as his friend, and eventually I was basically. He was very, very sick and I was the main person – I was the only person – that the doctors would talk to. I was basically running the show, but still I was his friend, even though I noticed that… There was a time I remember, for some reason we had to go to a certain place and there was a mixture of straight men – there were couples, straight couples also – and I noticed the doctors spending more time with the partner – the husband, the wife – talking with them, holding their hand. I thought, I didn’t get that, I didn’t get that. Even some of the gay doctors they didn’t – I guess they were overwhelmed, they were overwhelmed. But at the same time, when he died, it brought up a lot of anger, not just grieving the loss of my closest person in my life, it was grieving, it was anger that I had allowed that and these people had – it was kind of like not valued something that I felt and it was the most valuable thing. So, that anger – I had to go back… I remember one of the first things I did, I started volunteering before he passed away, but it was all about getting information, access whatever we could, but then afterward, I returned as a volunteer because I needed a place to put the anger. It was out of control at times. When I see people mumbling to themselves or talking to themselves sometimes, I think that was me – I used to walk around the seawall mumbling to myself, I noticed people looking at me out of the corner of their eyes. I was, I guess it was lost in anger, in grief, and the main emotion for me was anger and it was out of control. And I thought if anybody – some stupid straight asshole, let’s say – called me a name or something, I would have felt sorry for him because I had so much anger, it was like rage. I probably would have punched the – probably would have half killed them, it was just so strong. Luckily, nobody – that didn’t happen. I needed a place to channel it and I remember speaking to people at BCPWA. I said, “I want to talk to these doctors, just tell them.” Brings back emotion, like how that felt. So, they said why don’t you – they said, “We encourage you to do it. Let’s make it a project and we will even have you go out and speak at different…” They started this – it was the beginning of this, where people went out in the community and volunteered to speak, and I was ready to take it on because I just felt I needed for my own therapy, I need to let it out and I needed to express it. I made appointments with specifically maybe two or three or four, maybe, of these healthcare workers that were part of this team and I told them. And it was very emotional and some of them were very defensive. Some of them – it was funny, it was his lunch hour, and he said, “Don’t worry, just stay here.” He had the receptionist go and get him lunch and he ate it as I spent an hour with him explaining to him how I felt and afterward, he said, “I really learned something.” But there were others who were very defensive and said – they were just very defensive and kind of not open to what I was telling them. I went to different – out to speak to nurses, students, other healthcare students. From there I got involved with going out with people like Dr. Peter, occasionally speaking to groups. And then I was one of the original – I was one of the first – we started a treatment information project. The head of our board, his name was Alex Kowalski – he was a really interesting guy. He got the idea – he saw in New York the Gay Men’s Health Crisis, “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 9 that they had started a treatment information program as a way of – it was kind of empowering, not just passively following the medical community but educating ourselves and empowering ourselves. So, I was the first – there was a group of us. I was the at first meeting, the first group, and I stuck with them for years. It was – it grew. We did – we had some interesting projects. We did a project called ABCs on the Road – we had funding for a community person, an AIDS specialist. We would go on the road all over the province. I didn’t go to every single outing but I went to maybe four or five around the province to Native communities, to schools, to see – we would separate when we would get to a town. We would go up to Fort St. John, the Yukon, fishing communities, and Native reserves and it was like ABCs. The idea was we were trying to keep – more and more people with HIV were coming to Vancouver. We wanted to educate the doctors, the community and try and keep these people in their community. We were trying to – they had a hot line connecting Centre for Excellence. These doctors could pick up the phone – they had doctors on call, not sure 24 hours a day but for a big part of the day – so, these doctors could directly get help on how to treat this patient. And then we would go into the community and try and de-stigmatize, and sometimes little local reporters would be there, sometimes television crew would be there, and it was all about de- stigmatizing, putting a face. That article I showed you… And I had anger, a lot of it and that was – like, every time somebody down at BCPWA… I got kind of known as the person that was interested in being an activist, so they would be like, “Hey, there is a conference coming up and we would like to go,” and we would write and ask for… In the beginning, we wouldn’t allow pharmaceutical companies in the building, then we broke down and thought how are we going to get funding for this? So, we had this thing where we tried to separate ourselves from them even though they were funding stuff and it became kind of PC to have a community person, an actual person with HIV sitting at the table even though we had to fight for it. St. Paul’s didn’t want it – they had this expert advisory committee, an AIDS expert advisory committee, and we wanted to be at that group, and they said no. They allowed Dr. Peter to come because he was part of their family. Eventually he got sick, so somebody came from the treatment information program and then he asked me – ‘cause he was busy, he didn’t want to do it anymore – you had to meet at like 8:00am, so I became part of this group. There were some people that were part of the treatment information program that were obsessed – like, we were desperately trying to stay alive. I was telling people that I just spoke to a few weeks ago and they asked a few of us to get up and just say a few words. It was kind of the first evening and they thought they would ask a few people who have been around a long time to speak about different aspects and I spoke about the treatment information program, because I was part of it right from the beginning. And I mentioned that way back then it was kind of like, basically you were going to die, and what I told this group was the treatment information – when people went to their doctor and were diagnosed with HIV, they would say, “You have to get your affairs in order.” They would say things like you need to – some doctors were more blunt and would say, “Sorry, there’s nothing.” They just went by facts, but to us they were looking in the rear-view mirror, they were looking at research studies, but they weren’t looking ahead. We were constantly looking ahead – we were desperate to stay alive. We had contacts all over the world. There were some of our members – they were very smart people – lawyers, doctors – and they had contacts and they would say, “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 10 “This is what they are saying in New York,” or “They are about to release this drug in France.” So anyway, we had actually – there were a few people on our team, they knew more, they were obsessed with it, they knew more about that than the local so-called specialists. And they were valuable. So, I invited one of our members who was – this guy was extremely – he wasn’t, he didn’t have a degree in, but he just learned, he just – he was an intelligent person and he was obsessed with staying alive. He had his own business, he had finances, he would fly off places and have people treat him, doctors who decided to go ahead and just say, screw it, even though I am not supposed to be using this drug, or that drug, or using combination therapy, ‘cause it wasn’t sanctioned yet, and… But we were in a hurry. We felt the medical community wasn’t really in much of a hurry but we were, and slowly we changed the way research has been done. It’s a fact, actually – not just us, but other groups around the world changed the way, accelerated it, got things out before, sped up trials or worked on drugs that were more experimental, bringing… I invited this person to come and this guy – I remember doctors, specialists – I can mention their names. People like Julio Montaner – when he talked, Julio, who is so-called famous all over the world, he would be leaning in listening, because he would be saying things that he hadn’t heard because Julio and these doctors, they’re kind of immersed in their little bubble. He was in touch with people, with AIDS activists around the world who were using certain things, trying certain things, using combination therapies, in touch with doctors who were – like, people were threatening to take away their licenses, ‘cause they didn’t care. They had friends, lovers, they were living with HIV, trying, experimenting with different thing. And so, he was telling them in a very scientific way this is what is going on, this is how people are reacting to this drug, this is how people on the street are saying… you know? It’s what they call – it’s not based on strict research but it’s – there’s a certain type of research where so many people say something, this is how something is affecting me, so it is a certain type of research, so that was the type of research that they were talking about. Some of these people are very smart. Part of the reason I stuck with this group is I had access to them, they were giving me advice. And back then, the doctors, they tell the patients – I think the most common thing, the most what they would say was, we can’t – “We don’t have very much to offer you, but you just need to hope for the best, but be prepared for the worst.” That is what they would say, that was the most complimentary thing. Some would say, “I’m sorry, there is nothing I can do, and you need to get your affairs in order, because you will be sick within six months.” They were very blunt. So, they would show up at our office crying, looking for a second opinion, looking for – and I was saying to this group that I was talking to recently that it was a haven of hope in a dark time. We were offering hope and back then, in the early ‘90s, like I said, there was no hope, back then. I remember, I was telling the group just a few weeks ago, this group of people with HIV, I was saying back then there were people on our team that were saying not everyone will die of AIDS which they were also saying some people will survive. Back then, people said – it was like what I would call, what the doctors would call crazy talk – they said, “It’s not healthy to say.” They told their patients, “Don’t listen to them, they don’t have any facts. They – you don’t survive, people can’t live with this.” But here we are. They were right, they were visionaries. Other people were saying, “Don’t say that. You’re crazy. You shouldn’t be telling people this.” These people were visionaries. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 11 And a lot of them are gone now, but a lot of them survived many, many years, and they encouraged me – they were always encouraging me, they were constantly encouraging me, giving me hope, because I feel a doctor, the have a lot of power. They tell a patient, “I am sorry, there isn’t anything I can do. You’re definitely going to be sick,” some people buy into it. I feel that it’s – even my gay doctor – I remember a young gay doctor, I am telling him this, “Some people will survive.” He looked at me just kind of blankly, and said, “I think you are living in a bit of a fantasy world.” Part of me thought, okay. I remember going back to the team and telling people – they were angry. They said, “Don’t listen to that idiot. Not everybody will die. You have got to believe this.” It is like any epidemic – not every single person dies, people do survive. They inspired me, they educated me, they were tough, they had to be – yeah, they were tough people. Marginalized people. We had to deal with all that crap, like I said, people getting fired, people losing their homes, people being thrown out, people leaving their wives, husbands, lovers, ditching them. We had to – these people were strong, they were tough ‘cause they had to deal with that themselves and counsel other people… yeah. BK: Pretty amazing. P: It was amazing, and there was this backlash. You have got the premier saying we are going to quarantine you, you are sick, you are emotionally sick. Even the health minister said it was a self-inflicted wound. We had to deal with AIDS-phobia. It was – that group really helped me, really inspired me and they kept say… See, what happened with me was – we found out years later that there was such a thing as long-term slow progressors, or long-term non-progressors, and I heard that – this is what I heard at the Amsterdam conference, back in early-‘90s. BK: ’92, I think? P: Amsterdam. At these big – I have been a delegate at a couple World AIDS Conferences, one here in ‘96 when they introduced the cocktail. I have seen some of these big stars, you know, met Bill Clinton, talked with him at a conference, at the Toronto Conference. But in Amsterdam, according to – first of all, we were activists, we were on the edge. We started thinking, some of these – you had to jump through hoops to get on medication. Some of our clients wanted to be on medication, but you had to be under 500 T cells but they were 520 and the doctor is saying, “Sorry.” So anyway, we started asking people who were very sick and their friends and their allies and their families to donate, when they die, all the meds, vitamins, anything – donate it to us, so we started stockpiling it. It was illegal but listen to this. We had – people were taking AZT but it was very toxic. Some people came to us and said I want to – by then they also had other drugs – DDI, DDC – but people were taking them also just monotherapy. So, we had people come to us with HIV saying, “This is really toxic. It is making me sick. I wonder if I cut it down and also maybe take it with a few other drugs but take it a third, a third, a third…” Try different things, and I read that that’s how combination therapy started. They started feeling better, the doctors were saying, “You are gaining weight, your blood work is better. Is there anything you are doing?” And finally the patient would say, “Yeah, I have decided to do a combination.” And doctors saying, “Where are you getting your drugs from?” And they say, “I can’t tell you. I am taking a little bit of this, a little bit of that.” And the doctors started talking about it amongst themselves, and I read an article saying that that’s how combination… “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 12 And then at the Amsterdam conference, they have, you know, the big plenary, all these doctors from around the world, and they had this so-called AIDS guru talking. And then they had a Q and A, and this one doctor – and they had hundreds of doctors from around the world, specialists, researchers – one doctor put up his hand. “I have a patient. He was an American doctor and he has been in my practice, he has been HIV for two or three years. Ge’s not following the same pattern – his T cells are falling, but very very slowly, and he’s doing – he’s not on medication. He’s doing physically fine.” So anyway, the guy was saying, I think the head honcho, “Are you sure?” And then another guy put up his hand from, let’s say Canada or England, and said, “I have two patients,” and another doctor put his hand up and said, “I have a patient, too.” And that is how they found out, and all of a sudden, I had this classification, ‘cause my numbers weren’t dropping at the same rate. And so, even though I was taking actually – taking this experimental drug back them before HAART - there were doctors, researchers, experimenting with other forms, other ways of boosting the immune system. So, I started taking – it’s kind of funny, this drug that is on the street now, naloxone, the drug they use to help addicts who have overdosed, it is that drug but taking it in very small amounts. A doctor who had worked with addicts, and they were on that drug to help them to get off of heroin, or to help them to deal with – they put them on this drug to help them with not overdosing and all that. They noticed that their CD4 counts were more stable, so he got private funding – there were people funding private research. He did a small research study, and I was in Toronto and I went to New York and met him – paid, actually, to see him – and I ended up going on this experimental drug. But anyway, my doctor said, “The only way we will know if this drug is helping you or you are just a long-term slow progressor is to take you off the drug.” So, I decided to stay on it and he I was – I had this new classification. Like, you are still going to die, but you are going to die slowly. So, like I said, my head, it went form you are going to die – now, you are going to die but slower – to 1996 when you may not die or we can keep you alive with this HAART. You know, they made this big announcement, and it was very exciting, actually, even though they found out later that these drugs had some pretty toxic side effects, you know. I decided to stay on this experimental drug and not jump on the bandwagon. A lot of people jumped on that bandwagon – they really promoted it, really sold it, you know? They were talking about surviving, about eliminating the virus and all kinds of things. That is another thing – pharmaceutical companies are in business to make money, so the activists have accused them for years of pushing all the benefits and really minimizing the side effects. But I was thinking we live in a marketplace and that is what we are fed – every TV commercial, they don’t talk about – even the commercials for medication, you see, especially in the US showing, “Oh, I feel so great,” and you see in very small print you can’t even read it, “This may cause blindness.” So anyway, they were really pushing it and promoting it and a lot of people jumped on the bandwagon. I decided to wait, and I would say maybe eight years ago – no, maybe ten years ago, I started. I can’t remember the exact time I started on therapy – once a day, it was a new generation of drugs and I did a lot of research and I realized maybe it is time to go on. So, now here I am, sixty-eight years old. It is, funny I tell my doctor – I have a new another doctor, this is my third doctor, actually. They retired or they – or my first doctor had a breakdown, he just couldn’t take it anymore. My second doctor retired eventually and now I am on my third doctor who has got a “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 13 wife and a couple kids. But occasionally I say, “I survived, here I am,” ‘cause he was looking at my bloodwork. “You are doing great. Yeah, go to India, it’s not a problem.” It’s like, wow. AIDS has – in some respects, there’s been gifts. These people from this team, my lover, my friends, their biggest wish for me was just to savour my life, savour my health, so I kind of slowly… After I went through this grieving process, I really saw how my emotions affected me physically too. I went looking for tools and I was lucky I was in a position that I could work more part-time and take more time off. I went back to Asia – it was a place that we both really loved – and I started studying yoga and meditation, mindfulness meditation. I have been studying that since 1993, actually. I kind of – part of me thought I am still so-called healthy so I really want to savour it, I really want to – ‘cause I noticed people, a lot of anger and disappointment, and people dying, and I didn’t want to feel this resentment, anger, thinking if I did get sick I didn’t want to. So, I thought if I really savour, if I really try and expand my health and really enjoy it, then maybe I won’t be as resentful, as angry – that was my kind of theory. So, I really went on a campaign. I stopped drinking alcohol, I stopped – occasionally I would smoke weed or take drugs, I stopped doing that years ago. I was able to go off to Asia and study yoga and study meditation and I slowly started changing careers, where I just decided I wanted to get more into – live more of a meditative life, more of a quieter life, so I started studying massage in Asia. And I kind of specialized in Thai massage, some people call it Thai yoga massage – it is based on Buddhist philosophy, it is based on mindfulness, and it is based on helping yourself and others go deeper into the body, feeling the body. It is kind of like taking Yoga to another level. So, I became interested in that and started going back to Asia, I am lucky, because my partner and I had a condo – I eventually sold it and bought another space and I rent it out. See, part of me thinks knowing I have HIV – I remember one person was saying it is almost – for him it was like having a sword, a very sharp sword, hanging above his head that could drop at any time. ‘Cause actually back then, people – it’s funny, people went from feeling okay overnight to being very, very sick and dying. We regularly – at the office they would say so and so passed away, and we would say, “I just saw him two weeks ago. He looked fine.” That was a regular thing. So anyway, knowing that, knowing that at any moment things could fall apart, it kind of – it is interesting, it has made me value my life. Like, I don’t take my life for granted, even today – like I remember, I tell people regularly I really enjoy being on the planet. And so, what I decided to do is I haven’t been in a relationship. I have dated – like today I have a date, but I haven’t met anyone. Maybe part of the reason, I am older and I am living with HIV, like the pool starts to get more and more narrow, plus a lot of people today living with HIV are dealing with poverty, dealing with mental health issues, dealing with addiction issues. So, it is kind of where do you find…? It gets very small – maybe it is just one or two people running around the city and I haven’t met them yet. I slowly created – I wanted to, like knowing any moment things can change I really wanted not to wait to do the things I wanted to do, so I am lucky that I own the condo, I paid off the mortgage a long time ago, and I rent it and go off to Asia. And I work mostly for myself – I teach massage part-time and I work part time at a spa but I can go away, I can just say I am leaving for a few months and my neighbour and the management company help me, they keep their eye on my space. So, I go off to places like India and Guatemala and Thailand – it is very inexpensive “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 14 and this was – I can make money, like I actually make money. So, I have created this independent life and probably better than – let’s say that I hadn’t been exposed to HIV or AIDS, maybe I enjoy my life more? I appreciate my health and I value it and I regularly go to the gym, regularly go to yoga and people tell me – friends, family, strangers, they are saying, they tell me – people at yoga, they say, it is like I have known you several years, and you don’t seem to be aging the same speed as I am or the other people are. Like, I am sixty-eight and my peers, friends my age say, “I can’t keep up with you, I can’t…” We’ll just go by bike, “I can’t. I’m not going to bike there.” “Why don’t you meet me in Thailand?” “I can’t handle that flight, my legs swell up. I can’t sit there for twelve hours, my knees hurt, I am in pain. I can’t stay in a simple guest house.” This one guy calls it a sweat box, “I need air conditioning.” It is kind of like, the irony – listen to this, I have people that were concerned about me years ago. Now it’s like, “Can you help me? What are you doing? How can you be this energetic and active, look so good? What the hell is going on? Tell me what is going on. Can you help me?” That is the irony, I am healthier than negative people – friends, family, peers at my age – and I feel like I will live to be, if I want, maybe a hundred or more. I had this dream of being on Oprah as being one of the oldest people living with AIDS and she is shaking her head saying, “I don’t believe this.” It is kind of crazy that I went from the dark ages where you are definitely going to die, there is no hope, to now – here I am, a senior citizen getting a pension and running around the city and checking out all these cute guys, doing what I want to do. I was at a yoga ashram in India, I was at this beautiful meditation retreat in Thailand, I am studying Spanish in Guatemala – I am doing really cool stuff. I am inviting couch surfers in the off season, I call it the off season. I have a guy staying with me right now, a really cute guy from Mexico staying with me. Today he took his shirt of and said, “Am I too skinny?” I said, “No, you have a really good body. I am an expert, trust me, I know what a hot body on a guy looks like. I am an expert in that. You got a gorgeous body.” He was kind of laughing, saying, “Really?” “Yes, and maybe put your shirt back on” – whatever, I want to be respectful, I am a human being you know? Stop. Do you have any more questions? BK: I have lots. P: I know, I can go on and on and on. Like I said, I am a witness, I am a survivor, and back then, these people – way back then – they told me… I had fear or doubt, worry, and they were saying like I am saying, they told me over and over, “Not everyone will die, some people will survive.” And I held on to that quietly. I never talked to doctors about it anymore, I just quietly held onto it, ‘cause I knew I wasn’t going to get – from them I wasn’t going to get, they weren’t on the same page. These people were more visionaries, they were looking way ahead, and it’s true. And when I spoke to that group, I said – it was powerful – here we are, here we are. BK: It’s amazing. P: Yeah, here we are. They were right. And a lot of them that were diagnosed way before me – and a lot of them just died a few years ago, and even last year – they lived long, long lives. Some of them did die earlier but they were right. Here I was telling this group, who were, wow. A lot of medical people, they don’t want to acknowledge that, they don’t want to hear it, ‘cause it makes them look stupid. They don’t want to hear that back in 1990 we were saying this and they “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 15 were disagreeing. They don’t want to talk about the homophobia, they don’t want to hear about it. They just want to say things like St. Paul’s were so wonderful, they opened up their hospital to people with AIDS and we want to thank them. They don’t want to hear the dark side. But I am around to remind them of… Even though I am grateful, things have changed dramatically at St. Paul’s, it was because of us fighting, demanding. It was always the activists who led the way, dragging people with them – it was always the activists. Some of these people on my team, they were so smart that researchers at St. Paul’s and UBC asked them, “Would you like to be a co- author?” These people didn’t even have a degree. And there was this one guy especially who was a wonderful person – he just died, he had a lot of issues, he was very smart, but he had a lot of issues. He ended up committing suicide, but years and years later – he lived a long life. He was a recovering addict and he went back. I think probably it was fentanyl. He had a lot of issues, but he was a very smart guy. Listen to this, I guess the word got around that this guy had a lot of contacts – he was flying to lots of places and having people treat him. This cancer specialist heard about this experimental drug – it was a woman at the cancer clinic who was dealing with people with AIDS. A lot of people with AIDS were getting certain types of cancers and she heard about this drug, and she is a specialist working at the cancer institute – she couldn’t get her hands on this drug. They just said, no, it is an experimental drug. So anyway, she called him, called him through the grapevine and told him, “I have a patient who is dying and I really feel this drug could help him but I can’t get a hold of it.” Like yeah, within days he had it shipped to him and gave it to her. And then later she asked him, “I am doing this research. You want to work with me?” That is how smart this guy was, plus occasionally he got in trouble, ‘cause he would stand up to Julio, to these so-called experts. I was there – he would say, “I don’t agree with this. I don’t agree.” Julio didn’t like that at all, someone disagreeing with him in front of his team? They started having secret meetings in between the meetings – they didn’t invite him ‘cause that is how powerful this guy was, they were intimidated by them. That is the type of people I networked with over years. And I would show up at his business sometimes – he had a separate computer at his business just for HIV/AIDS, and he knew people. 1996 conference, he called me and said, “I am planning a special dinner with some of these doctors who are more on the edge, who are willing to work with me, who I fly to here and there, and they treat me in their homes. I even stay in their homes and they treat me because they are interested in what I am doing and want to – they are queer men, their friends are dying, they will do anything.” People were doing a lot of illegal stuff – they had to. He planned this special dinner in Chinatown – we went after, say in the evening, and he invited me. It was amazing, these people – we were all sitting at a table, these people, some of them were famous, they were well-known actually, and some in the AIDS community, you know, and they were sitting around talking and talking. It was really pretty amazing. Eventually the restaurant said, “We are closing. We can’t – we have to leave,” so somebody said, “In Chinatown everything shuts down.” And I remember some people saying we want to keep this conversation going. I said there is one just up the street, it’s just – let’s just go there. We just sat in the dark in a circle and the drunks and addicts were walking around us and we were just sitting there talking. So that was – it was like a second career for me. I was involved with some research studies, I was co-authoring, I was invited, they wanted community at a certain point, more and more community involvement. So, they would ask, “Is there somebody that would like to be part of this study?” “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 16 And I remember being on this panel in Ottawa – it was me and three psychiatrists. I did realize that they were videotaping it, or it was on TV – you know, C-span, they had it on there live. I was staying with my mother, it was in Ottawa, and I decided and I thought I will bike. And then I realized, oh my god, it is taking longer than I thought, so I was biking like crazy down to this hotel in the centre of Ottawa, biking as fast as I could. And I got there just in time and I was running. I show up, I am sweating and I am covered in sweat, and I ran right to the panel. But I saw these bright lights all – it was cameras, TV cameras. So, here I was raced to the front. I said, I am so and so, I am on this panel, and they said okay, sit down. Luckily, I was the first speaker, and I was sweating. People thought this poor guy’s sick, he’s got AIDS and he’s sick. And I was constantly trying to stop sweating before I gave my talk. And the thing is I got up and said, “Look, I am not a psychiatrist, I am just going to talk with you about my own personal experience.” And I was teaching groups of people with AIDS meditation – I got into doing that and going off to conferences, and I had my own group in Vancouver. And then I was teaching people on the Downtown Eastside, people with addiction, so I was talking about that. And it was funny, that was what got the most attention in the group, from the group. I noticed they were asking the most questions to me. Meanwhile, I am sitting with these academics. So anyway, there was some interesting – we went to prisons, I was part of a prison outreach program. We went to recovery homes, we went to Native reserves, different conferences, different cities. And I did my own workshop, I did – worked with the team, we created our own template. We eventually hired someone – she was very good at putting together different programs and templates. We would carry – dealing with different issues like side effects, when to start treatments, all these different issues. And so, it was like a second career for me and here I am, they gave me this award, twenty-five years. I am not sure where the time went. As people got healthier, now, very few people, except addicts, are dying, the funding has been slashed, right across the board – not just us, but many. And so, now we don’t have the funds to do all these programs, so I decided to just continue on. I donate massage and I occasionally give a workshop at a Positive Gathering over the years. At Loon Lake, we do this annual retreat, twice a year – now it is once a year – I give workshops there. They have this thing HIV university where I gave a workshop, so I still have my foot – I am still involved and I am still – but it is more part time. And I feel personally that that need, that real kind of – it’s not we have less people accessing services, it is almost like AIDS isn’t – it’s kind of not really on the radar. But now we are getting into – like here I am, undetectable, so I am dealing with that. Like, this man today, he doesn’t know that I’m undetectable, this is just our second date, he doesn’t know. I go back and forth – what are you supposed to do, make a big announcement? Like, you meet somebody, five minutes later, oh and here is my health history, before I even get to know you. Like, when do you tell people? Part of me thinks if – according to huge studies, thousands of people over years, nobody’s being infected, so should I – do I have to tell somebody at all if I am not infecting anyone? Part of me thinks why should I even tell someone but then how are they going to react if they find out? And there is still part of me from the old days that feels – it is like playing a game of cards, you don’t want to show all your cards right off the bat. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 17 And I had to lie, I had to go through my wallet every time I travelled out of this country, I had to de-gay de-AIDS everything. Because like I said, diagnosed in 1989, it wasn’t until 2010 – that is twenty-one years – I had to sneak into the US, I had to lie, I had to make up stories, I had to – not just the US, other countries also. I started going to India – a friend of mine introduced me – I was going to Asia to study and a friend of mine introduced me to somebody who lived in India. We have become really good friends. I was just there. He is eighty-eight now and he is a real character – this gay man, very grand, lots of… You would love him ‘cause his stories – oh my god. Like, he loved in Calcutta when it was very grand and the British were there and he had this grand gay life sailing off to Singapore on these ships, and they had their own little table in this colonial hotel that they would meet at on a Saturday night – it was really… And then the war and dead bodies on the streets and Ghandi coming and Mother Theresa and poverty and destitute. He has survived all of that and he has all these stories – when he couldn’t leave his apartment for a week because it was too dangerous, and other times it was just so grand and he would pick up all these sailors that would come to town. They would come to town for two weeks from all these – he showed me all these pictures of these Greek sailors, Norwegian sailors. They would wine and dine them and take them to the swimming club and to this hotel and all that sort of thing BK: I just want to let you know we are running out of time. I hope we can talk more, but I am going to stop it in that interest. [End of first interview] May 10, 2018, Follow-up interview BK: Returning for another conversation with [name]. Thanks again for being here and sharing more of your story with us. I guess we can return to near the start of your story to start today. When did you first hear about HIV or AIDS? P: I actually do. I was in Montreal with my lover at Eaton’s and I remember I was looking at magazines and I saw this article about this disease that was affecting, they called it homosexuals in New York, an unknown disease and a gay cancer. And it kind of sent shivers up my spine because I had been to New York two or three times by that time. And so, that was the first – I feel it’s kind of interesting, in my life I feel I have been, as far as here in North America, I have been at the beginning of what you would call the gay liberation movement and the HIV movement. So, I have been able to witness and be part of both of those events, and like I said in the previous interview, I feel like as far as gay liberation movement that – this is in North America, in the western world – this is our renaissance because we have come from… And I’ve been there, literally nothing, persecuted, told you are mentally ill, to the Prime Minister showing up with his family and hundreds and thousands of people celebrating. I mean, think about that arc. People marrying, having kids – it was unheard of, it was unheard of. So, I feel people will be studying this and there is so much art and literature that has been developed during that period, especially during the AIDS epidemic, libraries full of works of art. So, I feel like people will be studying this, like I said it is like the gay renaissance, and this is my life I have been able to be part of it, which is exciting to see. It is surprising, it is exciting. It is like, wow, this is really – I am part of this, it is interesting. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 18 BK: Going back to this information piece, did you – first of all, what an amazing life you have had living through all of this, but I am going back to this early period of the epidemic. Do you remember how you responded to that early information? P: As things progressed, my lover and I, we weren’t in a monogamous relationship, so we started slowly getting more information about unsafe sex and I actually met the doctors and the activist that coined that phrase, safe sex phrase, and the movement. I went to New York… BK: I was going to say, Michael Callen… P: That’s right, Michael Callen and his doctor that I went to see when I was in New York, and they coined the phrase with a lot of resistance from the community. I have seen him perform a few times here, Michael Callen, when he performed here with a group called The Flirtations – they performed at the folk festival and at the Cultch. They recorded too – you can go online, they were very good – queer men’s singing group acapella – very, very good. I have seen them at conferences too and met him. So we started practicing more, what we thought was safe sex, and our doctor – eventually we came back to Vancouver. Our doctor, this was back in the ‘80s, said, “I think you guys, you have been together a long time you aren’t having a lot of anonymous sex. I feel that you’re safe.” At that time there was nothing they could do, it was even before AZT monotherapy, so they said it’s probably better not to be tested. And after, when Vander Zalm came into power and he started threatening people to be quarantined, they said I don’t think you should be tested because there’s nothing – at that time they had monotherapy, but it’s not really that effective, and you are probably not HIV positive and there is a threat for you to be quarantined and a threat that they are going to go into doctor’s offices and private information – they are going to go through the files. That is what they were threatening, so the doctors were saying, “It is probably better not to be tested.” But maybe at that time – who knows – maybe my partner… I’m not sure if he infected me or maybe I infected him – who knows? Most likely he infected me, but who knows? Maybe during that period that happened, or maybe we were – we didn’t know at that time that you could carry the virus for many years, we didn’t know that. There was a lot of unknowns and people started getting sick and it was all – there was a real, I guess you could say, similarity to the early gay liberation days, or pre-liberation and early AIDS. A lot of people were afraid, closeted, there was a lot of discrimination. People being thrown out of apartments and families disowning people, people locking themselves in their apartments and not coming out. They refused to be – they were sick, but they refused to see a doctor, they refused to everything, because they didn’t want to be known or seen. Or they had this thing they called AIDS face. At that time, it was – people were – there was this rapid weight loss, and it was a sign, and also Kaposi’s sarcoma. There were signs and all the signs and people were afraid, people were – it was a dark time, it was a dark time. There were a lot of similarities with early years of being queer at that time. Public reacted in a very kind of fearful, hostile, judgmental – not everybody, but there were people that were reacting that way. There was a lot of unknowns and uncertainty and fear and secrecy and lies and people not disclosing – they were afraid. People going to anonymous clinics, that is where I went to be tested because I didn’t want those records in my doctor’s office – I gave a false name at VGH, they have an STD clinic. I remember I was tested there in 1989 and I got these – I was “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 19 kind of shocked, and even though my lover was already diagnosed I still was kind of shocked. I remember when I went to see my doctor the first – when I told him, he just kind of shook his head and said, “Oh no, how terrible.” That was what he said, that was his reaction. BK: Like a genuine, “that is really terrible.” P: What’s that? BK: He was being genuine. P: Yeah, he was sad, he was saying, “That is terrible.” So, there was – it was – there was a lot of fear. It was unknowns – where do we go from here? What can we do? The early movement, the society, what they used to call BCPWA, it started out at – you know Qmunity? That is where it started, but it was very… I remember going down there – this was before I started volunteering - it was kind of like, it had a very us against them, left wing, kind of activist, just a small group of people willing to actually come out and willing to walk into that centre. Even to disclose your status was a big deal. Like I told you, it was illegal, you could be thrown out of – you couldn’t get insurance, you couldn’t get a mortgage, you could lose your job. People were just afraid, really afraid, so you were really risking a lot actually coming out. So it had a real edge to it – no funding. We did eventually hire – they got some funding to hire one staff person, and then it started to – as this epidemic spread, more money was poured into it, and Vander Zalm left, and more liberal people showed up, and more money was poured in. And so we expanded, we started hiring staff, we started becoming more professional. And there was conflict at times like between the activists who founded the society – it was founded just by three people, I think three main people. Other people came along later but there were three main ones – and ordinary people, just ordinary people. One guy’s part time job was sewing clothes for drag queens, and then he ended up being a spokesperson across Canada, being interviewed by the CBC. It is funny how you can be thrust into a role – you’ve volunteered, you’ve said you are just going to do it – “I am going to go out there and talk about it.” There was sometimes conflict because they felt that the staff – the staff were there to support the members. They were support but slowly sometimes staff wanted to – they wanted to run the show. There was sometimes conflict and people leaving. I guess that is normal – they say that is normal with non-profits, they seem to have more issues around control, you know? It took a while to get things smoothed out. It never – there was always conflict and stuff like that. Anyway, it was – there was a lot of uncertainties – where do we go from here, what is happening? Grasping at things – there was always these new miracle cures, people phoning up saying, “I have something” – snake oil salesmen showing up, people trying different things, sometimes pretty outrageous stuff. My lover got sick, and so it was me caring for my lover, focusing on that and – which was very difficult. Plus, I had other friends that were getting sick, so there was one time I was running from one hospital to the next, from St. Paul’s to VGH. It was just you, just kind of reacting. It was like – it is almost like somebody dropped a bomb you just reacting to, ‘cause things were changing so quickly. And then when my lover got sick, I was really busy. Started out with one doctor, and I counted at the end – we had altogether, people like interacting, and we had maybe a “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 20 dozen people, from speech therapists to neurosurgeons, ‘cause he ended up with lymphoma and it spread through his body and he needed – they were trying all types of treatments including drilling a hole in his head and administrating chemotherapy right into his brain. It was like they were experimenting themselves, trying all types of therapies that – they had sometimes students gathered around, observing. And it was really – and they were calling me – eventually, I was on the phone, I was basically, towards the end, running the show, like ‘cause I was his medical director, directive, financial. It is very interesting, someone is eventually – they don’t have the capacity so you’re – if they choose you, you are the medical, the financial, and so you walk into the bank, show them the paper, and all the accounts, you can withdraw as much money as you want – it is basically you take over. So, I was busy tearing around and trying to support him. At the same time, I was putting my own diagnosis on hold. It was really exhausting at times, exhausting – at the end it is kind of like you are hoping it won’t go on. You are hoping that – you are just hoping that they will be relieved from suffering and relive yourself, because you feel I was going to get sick because it was such a physically, emotionally draining that I was feeling I may get sick form this. It was exhausting and he didn’t want anybody else – eventually we did get some people to come in, but he was very resistant to it. I have heard that from other people too. A lot of tears, but a lot of laughter too. I was afraid the first time I went into palliative care to visit my lover – didn’t want to go to palliative care, he wanted to die at home. That made it harder for me because I had to try to arrange for people to come and doctors to visit. He really didn’t want to – he did die at home, that is what he wanted. Even his parents came out. Being to palliative care to visit friends, and there was… I had a friend – he was very witty and funny, and it was very touching, very beautiful. We would go to – they had a lounge, maybe they still do and they – my friend was, he was very witty, and we would be sitting around laughing. I guess they say laughter is the best medicine – it really, really does, it is kind of relieving a valve. You have all this emotion and when you are laughing – it is funny, when you are in that state, you are feeling really close emotionally, and so the tears and the laughter is like a relief, a momentary relief. And when you are laughing or crying it is even more intense than it would be normally. So, we would be sitting there laughing and he would – he was silly, he was a character actually. He was telling people that this was like a club med – everything is included, all meals. “To be honest with you, it is more like club dead,” he nicknamed it. So anyway, the thing that was really touching, we would be sitting there, a few of us acting silly, and there would be dogs running around – some people brought their dogs. And people would literally – they would hear the laughter. These people were dying, not just from AIDS, but from other – their final stage of disease, cancers, stuff like that. They would literally ask the nurse to help them, or they were in a stage where they could, with their wheel chair, cane, hobble down. They could hear the laughter and they just wanted to be part of it – like the last days of their lives. And it’s kind of like – I found that very touching. It is like you just want to be, even though you are dying, you still want to savour those last moments, you want to be part of that, just last kind of joyful moments, yeah. So, they would literally – people would come down and say, “Could I join you guys? Sounds like you are having a party here.” People – some of them were straight people. [Name], his name was [name], he would be entertaining them all, and people would lose their inhibitions. It is like there is no more pretense, you are on your last legs, you are dying, and it is kind of like you are more real. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 21 And one time, it was my friend’s birthday and it was his last. I think he died two weeks later – he was very, very sick. But we had a party and people came and some people lit sparklers. [Name], my friend, he was lying there, kind of like – I mean, he was like a skeleton, basically. And the fire alarm went off and people said, “Oh no, fuck,” so they ran and told the nurse. “I am sorry” – they could hear the fire alarm and they said, “You don’t have to call the ambulance, the fire department, because it isn’t a fire. We set it off.” And they said, “I know, but they will come. It is part of the protocol. They will come – don’t worry, they will just show up and leave.” And so, anyway, [name] loved firemen, so anyway, people were telling him, “[Name], the firemen are coming.” He was coming in and out of lucidity, his eyes would be closed, and he would open them, and we were saying, “[Name], it’s your birthday and the firemen are coming. How about that? What a surprise.” So, these middle-aged firemen with – some of them actually had beer bellies, or just middle-aged, they showed up. And somebody whispered, “[Name], the firemen are here.” He looked around at them and yelled out and said, “I know they are here but why did they have to send the ugly ones, like middle-aged, ugly firemen on my birthday,” and everybody started laughing, including the firemen. And they were apologizing, like, “I’m sorry, man” – two straight guys with all these gay men. Yeah, this part makes me want to cry because it brings me right back to that day… And looking out at St. Paul’s about an hour later, who comes back but one of the firemen, this straight guy – he comes back with a new calendar with all the hot firemen and gives it to him. He says, “Here, I wanna give this to you as a gift.” I thought it was really touching. Occasionally, you would see that kind of generosity from people you wouldn’t normally expect would do that sort of thing, you know what I mean? Not every straight guy construction worker is – sometimes they will react in a way they surprise you, completely surprise you. Like I said, he came back to a room full of silly gay men, like here I want to give you this gift. It was really touching, something I will remember for the rest of my life. BK: It is a beautiful story. P: It is a beautiful story, it is very touching, but there were moments like that. Like I said, the best of times, the worst of times. There were some wonderful – I had these conversations with my lover, lying in bed with him, just talking about what I would do after he had died, and he was giving me… I would say – we lived in Asia – I said, “Maybe I will go back for two or three weeks.” He would say, “No, I want you to go back, not for two or three weeks – go back for a few months. I want you to enjoy your life and savour it.” Like I said previously, take me with you. Don’t forget me. And he set up his will – we were together fourteen years but he set it up that I would get the bulk of his estate and that is what he wanted. And he wanted me to make sure that I really profited from my life as long as possible, and I had other friends that would say the same thing to me because they knew they wouldn’t be around and they wanted me to just… I guess it was kind of like – maybe they were saying about themselves, maybe I should have profited more. The average age back then of people dying was something like thirty-six, thirty- seven – that is how old my lover was and my friend [name], and other people, and that was the average age – younger and older but that was the average age. They wanted me to take advantage of it – don’t waste it, don’t – it stuck in my brain. And slowly I – I was in a position, I was fortunate to have income and inheritance, I was able to purchase another place and pay off the mortgage, so I was in a position, and it kind of stuck with me. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 22 Like I was saying before, looking back, I realized there were gifts. It forced me to go into therapy, it forced me to find tools. Also, I really wanted to savour, expand as long as I could, feeling healthy, so it set me, it – I went down, slowly, two steps forward, one step back, like a road where I was really exploring health and realizing there was different levels, there is different… And then I had people volunteering, people saying, “Oh, you are looking so good” – I would call them cheerleaders. They would say, “What are you doing? You are looking great.” They were encouraging me – we were all encouraging each other – doctors, nurses, social workers, they were all encouraging, saying keep doing what you are doing. “I am so happy,” I would say, “I just came back, I was in India.” And they would say, “Wow, you are lucky.” Sometimes I would say, “I don’t know if I should go,” and I remember my doctor saying, “Just go. You can do it.” My life became more interesting, actually. And then I was – I learned through therapy, through my yoga, my meditation practice, I learned how to get to know myself. I had a friend – he’s passed away also, not of AIDS, but eventually he passed away. That was the friend I told you about that we were very close and we shared a space here – remember it was called Seymour slum. He told me when I was going through all of this, about a year after, I was talking with him saying that I would really like to meet someone. I remember him saying, “Forget about meeting somebody. Get to know yourself.” He said – I said, “I think I might go back to Asia,” and he said, “Go, and when you are there, get to know yourself and maybe don’t focus on wanting to meet someone so much. And get to know yourself, have a love affair with yourself.” So anyway, it was people encouraging me, and also having the – I was in a position where I was a slow progressor. I was – financially, I could swing things, I could work part time or work for myself, and I ended up slowly changing careers. And in retrospect, I realize, wow, there were a lot of gifts, and because I am living with HIV, it’s funny, I feel like it is like I don’t take things for granted. I realize – because I have seen it over and over, people’s health in a matter of weeks, months, people getting extremely sick and dying, so I realize it is fragile, it can be taken away at any time. So, that makes me really want to savour it, appreciate it more, realize it is impermanent. And through my, I study Buddhist philosophy and meditation, we talk a lot about impermanence and trying to live moment to moment – there is no guarantees – so, it’s really helped me to be more enjoy life, more appreciate it, and realize it’s fleeting. It’s pretty, also, it is nice to be on the planet – I enjoy it, but who knows, maybe they went on to something better – I won’t know that until I die. I am waiting around, I like being on the planet, and here I am, retired, sixty-eight years old, and like I said previously, that was unheard of, so it’s kind of like… And I talk sometimes to other long-term survivors and we are both sometimes – often we will say like, wow, how did we get here? This is like – I remember I told you I spoke to a group of people at a conference and it was unheard of. It was kind of like you are living in a fantasy world, you shouldn’t be saying this about survival, you shouldn’t be telling people this, because you are giving people false hope. But then I was thinking about it – the doctors, if they would also buy into that, then there was more pressure on them. By saying there isn’t – this is a terminal illness – there has been research showing they actually, when you were diagnosed and maybe started showing symptoms, doctors would be less likely to be super proactive, because you were going to die. It was also common – they would emotionally distance themselves from you a little bit, so you would feel that a little. I felt that with my doctor – there was a bit of distance emotionally, kind of like occasionally it was like, they would all say almost anything… “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 23 They would say, “Well you know, you are immune compromised. You know if you had a rash or a fever, it may take you a little longer – you are immune compromised.” And it is funny now with these new therapies, they have proven that people aren’t immune compromised, and so activists have had to educate their doctors when their doctors say that they have to – say, “I am not immune compromised. Maybe I was but now I am not.” We had to deal with that. It was hard on the doctors too – some of them had breakdowns, some turned to cocaine, some turned to… It’s kind of interesting – maybe I shouldn’t be talking about it on camera, but I was talking to a social worker at a conference from Toronto, and he was saying that there has been an uprising in people with HIV and friends talking, telling him that they are having – there has been… He said, “I had to send out – I had to talk to two or three doctors about inappropriate behaviour with patients.” And the thing that is interesting, there was a rise – and the thing that was interesting is that we were discussing it. It was something – he didn’t want to mention names, he would warn people, but “Eventually if this keeps going on, I am going to report you.” Anyway, the thing that is interesting is that you are under such stress, you are dealing with literally life and death, you have got patients basically pleading with you, and when a cute guy, a healthy cute guy – it is like the mind is craving a distraction and sex and especially getting off, it is the ultimate refuge. You are dealing with so much that you kind of – it’s like drug-like, you are looking for something to release. There was an up-rise according to this social worker who worked in that field. He was telling me at a conference, that he had to personally – had to talk to physicians, but at the same time you don’t want to make it too public because we desperately needed them – they had huge HIV practices and they were… Some doctors didn’t want that – they tried to not have a lot of HIV people in their practice because it was very labour intensive. Spectrum Health went to the government and said, “Look, we are spending half an hour, forty-five minutes. We are losing money.” And they created a new system – it has a new system that they created. The doctors aren’t paid piece meal, they are on a completely different system that they created and the doctors, they own the space – well, a few of them are the major owners, and I think the others have a piece in it. They created a new system so now it is focusing on HIV actually. That is my little story – I don’t know if you have any more questions. BK: Oh, I still have other ones. One thing that stood out to me in the story you just told is all of the different emotions that go on when you are involved in caregiving – the sense of relief when somebody moves on, passes, the sense of loss, obviously – the intensity of all these emotions. P: Yes, yes. BK: It is hard to explain how all these different pieces fit together but it is just very intense. P: Very intense, very intense. And like they feel actually that – they say people coming back from battle, they have the acronym PTS, they have this post-traumatic stress disorder. They feel people living with AIDS, it is common, that syndrome, that it is common. And maybe I am suffering from it too – maybe I am not even… I haven’t really explored it in detail but there have been articles about it, because it was like a war zone, but things like that bring people closer together. There is a woman, she is beautiful, her name is May. She is kind of like – she is ninety- two and she has been with our society – May Mcquaid? People have mentioned her? I have known her for years actually – we have gone out to prisons together. She said, “Don’t worry, no “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 24 one will touch you,” ‘cause they all love her in the prison, she is like a mother. She said, “If you are with me, don’t worry, no one is going to attack you.” I worked on some interesting projects in prisons. One of them was training young prisoners in palliative care to look after older prisoners who were sick with HIV and Hep C and a whole group went in at different times – doctors, nurses, social workers. And I was teaching them meditation and talking about my own personal journey and they were being trained to be healthcare aids, getting certified. But I thought, when you think about it, they are hardened criminals, maybe a lot of them feel a lot of shame and they have ruined their lives. These are long-term prisoners and to be able to turn that around where they are learning these skills and nurturing, caring, and working with people in a very – it’s like redemption. It’s like you slowly – you realize I am doing something with my life, I am giving back. May told me – I was asking her what was the best time in her life, the best period, and she said, she remembers she was a little girl and remembers the Depression, and she said that was the best time. People were so – there was a lot of caring, a lot of community coming together. People sharing, people being altruistic, and it was the same. There were people that were terrible and judgemental and discriminating but then there was the other side. There were people donating time, money, all kinds of things. Teams, they formed different teams to go out to people’s homes. There was a lot of volunteerism and people coming together, so it was a very beautiful time, actually, very beautiful. But at the same time we had to deal with the other side, the discrimination. It is like you are forced into another closet, whether you could not – I kept saying you are going to be unfortunately targeted – it’s like a gay man in the 1960’s being openly gay. Your chance of getting a well-paying job in the government is going to be pretty slim, or with any organization. It was the same with HIV. I knew people that were thrown out of their apartments and lost their jobs and barred for life from entering the US because some border guard, just this macho border guard didn’t like their appearance, went through all their stuff, and then he had the – just him – the capability of barring them for life. It is like you are a criminal. When I was travelling, I had to be very careful. In India it was illegal for me to enter the country and if they would have caught me, they would have put me in jail and then they would have – ‘cause I know someone who had that happen to them. It wasn’t for HIV, it was for something else but they were put in jail, it happened in Thailand too. And you have to pay or get someone to pay to fly you out of there or else you just stay in this awful scary jail – fly you out and they escort you in handcuffs into the airport on the plane like a criminal, ‘cause they are worried you might escape and they wait until they close the doors, right? They wait around, watch the flight take off. There are good reasons to not be public about your HIV status. It was very discriminatory. They had to bring in laws, we had to fight. Same with the early gay liberation movement, we had to fight. It was Trudeau, Pierre Trudeau, he helped – he was a personal friend of Arthur Erickson. BK: Didn’t he design SFU? P: Yes, he was a gay man – he designed Trudeau’s office in parliament and I think his home in Montreal. They were really good friends. He was the first person who said you can’t – they passed a law, there was still discrimination going on but at least we had something. It was kind of interesting – now his son has taken up the banner. It’s kind of interesting, eh? They say Pierre “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 25 Trudeau was maybe bisexual, maybe his son is too. He is so kind of out there with the clothes – he’s a bit of a drama queen. BK: I am sure a lot of gay men would like it if that were the case. P: That is true. Did you know that my nephew – and here we go, I will just say very briefly, lived in Whistler in a house with a bunch of guys and one of them was Justin Trudeau. He was just Justin, they didn’t know he was Justin Trudeau – he wasn’t famous then, he was just this young kid. And I guess him – or maybe his family didn’t want him to lose touch with the common people. When you think about it, you are twenty years old, he was studying to be a snowboard instructor, that was one of his first jobs, and he lived in this house with a bunch of guys, and with my nephew, and he became a snowboard instructor. And then he became a drama teacher – anyway nobody knew that he was – that his father was Pierre Trudeau. Let’s say you are twenty years old, do you want to live in isolation in some beautiful kind of chalet or do you want to live with just a bunch of guys, a bunch of young people your age just hanging out and have an ordinary life? That is interesting that that was what he, maybe his family encouraged him to just live a normal life. Don’t – even though they were wealthy, you don’t have to do that, it is interesting. Are there any other questions? BK: I still have other questions. I am mostly asking questions in relation to your story. You mentioned in the fireman story – to me that seems to suggest that maybe in some respects perspectives in the community were changing over the course of the epidemic. Did the epidemic contribute to the community gaining more acceptance? P: Yes, definitely. See, what helped a lot was Dr. Peter, who treated me as a doctor and we actually went out together and did talks together. He started – that helped a lot because he was a physician, he was very articulate, he was very good on camera. They started the Dr. Peter’s diary – it was on weeknights just for ten- or fifteen-minute thing, I used to watch it. That helped a lot, putting a face, and then people – there was compassion, people felt the suffering, people started coming forward. It did – it really advanced laws, you know, these laws to protect us, it pushed them, accelerated them actually. Because like I said, things – I guess the public wasn’t really aware of all the discrimination that was going on but then they became aware of what was going on, so that actually really helped. Plus, in those days, in the early days, it was most of the people infected were gay men, a lot of them were middle class, upper class, working class, but there were some very influential gay men who were very connected who really helped us. Men like – and they really, really helped us and they were good and some of them were wealthy and some of them hosted big fundraising events and invited all their straight friends, then some of them were lawyers and or worked with the city. Here in Vancouver, gay men have really shaped the city. Arthur Erickson, he was – he did a lot of work as far as planning. I remember years ago listening to him, hearing him speak in person or watching him on TV talking about his ideas, but they have come to fruition. He talked about increasing density in the city and how that would make the streets more safe and alive, and that has actually happened. Major planners, people like Gordon Price, people – other people also – two or three other people, planners, head planners, they were gay men that had, they helped shape the city. The had influence and they had other people federally and provincially, so yeah there was acceleration, slowly, acceleration. “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 26 And also activists demanding – tying themselves up and locking – we had protests here in front of this building, at conferences. ACT UP came about and we had chapters here – John Kozachenko, he’s a character. The police all knew him, actually. He would – I guess maybe he told you, he loved being pushed around by the cops, he actually liked it, so that would really bug them when he would be, “Hit me again, push me around, you’re cute.” Sometimes they would just pass them by and they would just drive by – they didn’t want to entice him. There was a lot of – they say actually, you probably heard this, but through the gay liberation movement we were organized, we were angry, we didn’t want to go back in the closet. That is what we thought they were trying to do. It really accelerated all these laws that came in – marriage, adoption – they feel like the AIDS movement accelerated those, passage of those laws. There is still stigma – I don’t know, it is unfortunate because you think by this time we would be over it or just educated. If you go through these – actually the personals have been taken out of Craigslist but if you go through the chat lines and different places people go to look for sex, it is so common – they are asking, you know, negative, clean, disease-free – wanna see just been tested. It is kind of – me reading that is kind of… And then there is this debate – do you know that, unfortunately – well, you are probably aware of this. In Canada, the laws – it’s kind of I have to disclose. I can be, when you think about it, easily blackmailed – I could tell someone and they could turn around and say they didn’t tell me and even though I am not – I am very, probably safer to be with than being with someone who is so- called negative who may have been tested a year ago. I am safer because I know that I am undetectable and I know that I am not what they call virulent, I am not spreading the virus. I know that. I mean there have been long-term research studies over years, with huge cohorts. And so, at the same time, people, they get – there are some people, they are like, it’s kind of, yes, you need to tell people. I feel like I am some sort of – it is kind of like damaged goods, like you know, it just makes me feel like still it’s kind of a bit anxious for how this person is going to react, even though it’s – it shouldn’t be. I feel they need a really big campaign but maybe they just don’t have the funding to really educate people on what’s happening today. BK: The policy needs to reflect the science. The policy doesn’t reflect the science. P: Yes, and I am surprised because I thought Canada was more advanced, or more… Other countries, yeah, like in Britain, it’s like if you infect someone then yes, you are going to be charged, but if you don’t, you aren’t going to be charged – or knowingly infect somebody. It’s – but here, it’s ridiculous, it doesn’t – it needs to be changed. They are working on it, but we have lost a lot of funding, so I am not sure how much time that people can spend on it, but it’s – I don’t… It’s funny, I feel I am a little bit in the closet – here I am talking to you on camera, but I – yeah, I don’t meet my neighbours, I don’t talk to my neighbours about it, and I even have – people I know that aren’t super close, I don’t tell them. There was – I had a friend I have known for years that lives in Portland. He comes up annually and stays with me, but it is funny, I was afraid to tell him because he is very – I noticed he is a very nice person but he is very – he has had falling outs with people. He is very emotional when it comes to personal relationships. There was a time when I wasn’t communicating with him and he got really upset and he sent me an email that said, “I haven’t heard from you and it really bothers me, and I am feeling that maybe we should just end this friendship. I am really upset about this.” So anyway, I was afraid to tell him ‘cause I thought back before 2010, I thought he could just pick up the phone anytime and “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 27 call the – whatever, immigration services or – and just say this person is living with HIV and traveling and I could be arrested, I could be… So anyway, I was afraid to tell him, so I guess we’re not super close, but I just never did. I didn’t know how he would react. I have had people get angry with me for not telling them. Family even, I kept it from my family because I thought, I didn’t know how they would react. I am not close to some of my brothers so – but one brother, he found out ‘cause I am saying I was doing this, coming to Ottawa, coming to Montreal, coming to Toronto, to be part of conferences. He was wondering, “It’s interesting, you are presenting this at a conference,” and then he did some – I think he went online and noticed some article that I wrote, so we went out for lunch and he kind of got angry, confronted me, said “Why are you keeping this from me? I am your brother. I am your family.” So, I told him I wasn’t – I was kind of – my mother, she tends to worry about everything and I have an older brother who is very – he’s a nice guy but he is kind of into, interested in my will. And when I was going to die – and it’s kind of maybe… let’s say you had a brother who owned his own home that was going way up in value and he announced to you he was dying – maybe that would be in the back of your mind, “I wonder if he is going to leave me something in his will.” It is kind of human nature maybe, it’s kind of… So anyway, yes, I still feel today, 2018, that still – like I work part-time. I don’t think it would be a good idea for me to be really open about that, not that I am ashamed of it, it’s just that unfortunately… I remember somebody saying, see, with HIV there’s AIDS/HIV, it’s a lot of fears around it and the main ones that are fear of death, fear of disease, and fear of difference. Those are big fears for a lot of people, so I mean those words are loaded with thirty years. We need to change the terminology, we need to stop calling it HIV and AIDS ‘cause it is loaded, and people, when they hear that, they – it brings up this – it’s like I’m saying, a lot of fear, a lot of people react. And sometimes I have had people say – I am not exposing anyone and they just say, “I don’t know if you can say that. I don’t totally believe that.” And anyway, we need to – I actually – there have been a few people that have been talking about changing the terminology and giving… Actually [name] created a workshop that was an interesting workshop. One of them was, he had a list of chronic diseases – heart disease, high blood pressure, diabetes, HIV – and he was saying, “Which one of these would you not like to have?” And almost which one is the – you definitely would not – and almost 80 % of the people said HIV. He said, “This is the least of…” BK: Manageable condition. P: Yeah, yeah, today. BK: Today, yes. P: So, it is interesting how we are conditioned, and it takes maybe years and a lot of effort and campaigning and maybe media, And even the media, they talk about these – they use certain words. There’s been people who have been arrested for having sex with people talking about their – with multiple people – and they talk about these terrible criminal people that – the media, the fear mongering at times. So we need a lot more, a campaign, a lot of education, because “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 28 people are still fearful and it’s not – it shouldn’t be. I feel like I am in partially in a bit of a closet just for my own self-protection. BK: Yeah, the stigma, I don’t think it is the same as it was in the ‘80s but it is still there. P: That’s right. BK: You wonder if undetectability, using that as a category of identity, maybe that is one way of dealing with some of the stigma. P: That’s right. It is slowly, there are some sex ads where the guy is saying negative or undetectable – there are a few, not a lot, but there’s a few. You notice if you go online looking at different sites, gay sites, or they are on PrEP and so some people are, and then I have seen ads where somebody says, “I am undetectable which means this.” I even wrote a few people thanking them for saying that. “Thank you for putting that online and putting it in the sex ad.” Because gay sex, queer sex – because people need to hear that, they need to see it more and more and so. It is the way it is. Then you see ads where people want to be gang banged and you realize that they’re – not everybody is undetectable and not everybody cares or knows. You have to be – I have sent, wrote them saying – trying to educate them. And I read an article by this activist in New York who was writing people, or putting – posting things online saying this is unsafe, and people would write him back, “Go fuck off and get off of this site, you idiot,” and “We don’t want to listen to this crap.” He is saying you shouldn’t have ten people, like an orgy with nobody practicing safe sex – you know, there are limits and so people don’t want to hear that either. BK: Maybe there is a bit of a generational divide. If you are my age and you are growing up in an era where HIV doesn’t mean the same thing that it used to, maybe there is a gap in the communication between the guys who have gone through it and the guys who are just coming out. P: What about people your age? Let’s say some guy comes along and says, “I am living with HIV.” How do you feel – like, how do you feel? Do you feel a little bit afraid or worried or concerned, fearful? BK: I don’t but I don’t know if that is reflective of other people my age. Certainly, with undetectability, it wouldn’t concern me at all. P: Okay, that is good. BK: But I don’t know if I am an accurate reflection. It probably varies a lot. In any case, I think stigma still needs to be worked on. P: Oh yeah, it does. It is much better but we still have to keep working on it. I don’t know. Maybe it is a process. We are lucky – it is kind of interesting, I realized I came from nothing, like from when I was a kid and it was kind of scary at school and I was occasionally targeted by bullies. I wasn’t beat up but I was pushed around – luckily, I wasn’t bashed. You know, I was afraid at times, there were certain years that – certain schools, certain teachers – I even had “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 29 teachers that were homophobic when I look back. Even my family – like I told you my dad and mom fighting. My father ignoring me, my mother at one point saying she thought I maybe had a mental illness. I had a lot of self-esteem issues from that and from teachers – some teachers who were really open and very nurturing, I did very well, and other teachers who were homophobic and not very friendly, I didn’t do well at all. And back then, like way back then, there were – homophobia was more – there weren’t laws, like you know. I distinctly remember especially when I first met my partner, my lover, you know, there were a few – not often, there were a few times when it was so blatant. I remember going to San Francisco and I remember this customs guy at the border really saying, “Who are you and why…?” Just looking at us like we were criminals. You know, “What are you doing, where are you going, who are you, what is your relationship?” The one time we took a train across Canada, and we had a little compartment, and I remember the conductor saying, “Two men can’t stay in this compartment. It is too small.” And I said, “It is for couples.” “You can’t stay here.” I just said – I said, “Well, we paid for this and we are a couple,” and he just looked at us like we were – he was a real fucking asshole, so I just kind of slammed the door in his face and locked it. And I thought he eventually – they have this run to Winnipeg and then they change crew, and I thought we are going to be with this asshole, so we stayed in our room – we just didn’t want to go out. We brought food with us actually, so stuff like… I remember travelling in Europe, we went to this little guest house and we just said we would like a double room and the woman was like um, looking, and she was saying, “Yes, we have this room but it only has this one bed.” And we said we were ok with that and I could see that – I guess it was the husband, he was staring at us, and then he came over and just said, “We are full, we don’t have any room.” And I said, “Your wife said you do.” And he’s like, “Just go. We don’t have room, get out of here.” Occasionally it would happen – not often but occasionally it was blatant. Even today you have to kind of – I wonder sometimes how far – how open can someone be, like it’s kind of like testing the waters. I remember I was at the gym at the aquatic centre just a few years ago and there was a guy doing yoga, a really attractive guy, but I was appreciating the beauty of it. He was hot too, but I was more – I was kind of working out and the same time I was enjoying watching him. But later I was in the sauna and this guy – I think he looked Middle Eastern – I am not saying all Middle Eastern people, no, I’m not but he had a heavy accent. But he was kind of looking at me in a real angry way, so finally I said, “What are you… what’s going on?” And he said, “You look too much. Stop looking at people.” I said, “I can look as much as I want.” Anyway, a few days later I saw him, he was at the gym, and I just walked right up to him and he had a look on his face of like fear. So, I said, “If I had been looking at a beautiful woman doing yoga, would that have bothered you? Would that have really bugged you?” And he said, “Get away from me. You are crazy – you are fucking crazy.” I said, “I am not crazy” – I said, “I am not crazy, just…” So, occasionally stuff like that – so then I am reminded, wow, how… It’s kind of like there’s certain, maybe – you have to be a little mindful maybe, you never know. Another time I was at another gym – I go to the gym regularly but this – there was some really hot guys – it’s a nice treat. Part of me – because I realized because of my HIV status and because years ago even there would be – you really have to not be sexual, not be – you are going to spread the virus, you are “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 30 going to infect people. So now it’s kind of interesting. And also my whole history of when I was a kid feeling ashamed, feeling afraid, feeling… See, now I want to be – it’s kind of like – it’s almost like I survived and it’s like the ultimate – I wouldn’t… maybe you could say revenge is to really enjoy my life and just love and admire these beautiful men and have these nice encounters with them at the gym or at yoga. And also be sexual, be openly to a point, just enjoying and admiring and savouring all of that because I went through years, grew up in Catholic schools, lived in the period where it was illegal, so now it is kind of like I want to celebrate it, I want to… It’s like – and I’ve told people, occasionally I have people over at my place and I am trained, I have a massage practice, I have done quite a bit of training in tantric and erotic massages, so occasionally I have people come over in the afternoon and I am giving them this erotic massage and both of us end up climaxing and it is like really enjoyable and to me it kind of like… Yeah, it’s even – I say here we are, middle of the afternoon, we are both sober and we are just having this great erotic experience with each other, and it is wonderful, healthy – it’s like no shame, no guilt. It is like the ultimate – like I survived and here I am years later and they tried really hard at times to take away my love of men but they didn’t succeed, they didn’t succeed. But at the same time I realized that I have to be – I was at another gym – I will just say it very quickly and I was looking around and there was some really beautiful men and I was fantasizing about me maybe seducing them and sucking their dicks and how nice that would be… and do you ever have those fantasies? BK: Well, of course. P: Well anyway, listen to this – real muscle guys. Well, they got into a stupid fight over I guess using equipment, some guy saying, “I am on that,” the other guy saying – they ended up, one guy just saying, “Fuck off, get out of my face, asshole,” the other guy… They start to get away from each other but they are yelling, “You are a fucking asshole,” and one guy was right next to me. Here I was admiring these beautiful men, this one guy saying to the other guy – it is probably the most degrading thing he could think of, and he was saying, “Fuck of, you faggot,” and he was grabbing his dick and saying, “Why don’t you suck my cock, you faggot,” but in a really and angry and degrading the other person. And I am thinking, here it is, to him this is the most degrading things he can say to someone – like you are a fucking faggot and a cock sucker – and I’m thinking, wow, there are some people out there that that is how they see it and I have to be a little bit careful because they are still there. And this was in Mount Pleasant. I want to sometimes be pushing boundaries, like how – it’s like slow process – you have to be a little mindful, push, be a little more mindful of – ‘cause I don’t want to get my head kicked in, I don’t want to go there. That would really fuck me up, that wold really – that would be really devastating. BK: I guess there are still elements of homophobia certainly lingering. P: Fear. BK: Different than it was. P: It is different, but it’s still a process and there is still, unfortunately, people who are really – they are not as open or knowledgeable, or tolerant – tolerant. But things are so much – it’s “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 31 amazing actually. And I thought, speaking of all of that, maybe there is a reason I live – I moved to a much more liberal city, I live in a really liberal – I live in Mount Pleasant. BK: It’s a nice area. P: It’s very nice, I like it. I live near Main St., on [number] avenue near Main. I am lucky, I have a large loft – it’s called live-work, it’s a commercial residential space, and I live in a really liberal building with artists and neighbours who comment when I am walking with some cute guy. They will say, “Hey, this guy’s cute.” Like so, but I am thinking subconsciously, I probably planned that because I want to just have an open liberal life and it meant me leaving at a young age, leaving my city, moving to a bigger city and eventually moving to Vancouver. But it was – at the same time, there was this loss – my family are all in Ottawa, the suburbs of Ottawa, I have missed out on seeing my nieces and nephews grow. Occasionally I would be there but then only for a week and then you are gone. It is very hard to keep up with them. And they don’t seem to come out to Vancouver – it just isn’t on their radar. I prefer to be here, I prefer to be here. BK: I don’t blame you. You mention ACT UP. Do you remember what they were up to? Were you involved at all? P: I was doing my own activism with the treatment information program. They were more – they were acting up, they were going to demonstrations, they were very vocal, they were using theatre, they were using drama. And in the States, people were donating their bodies and people were carrying coffins down the street and going to Washington and taking dead bodies and shoving them on the White House lawn saying, here, this is what you are doing, your policies. Here there was a chapter with John Kozachenko – he was one of the founding members of this chapter. It was like a small – there wasn’t a huge amount of people – New York, San Francisco, they had much larger chapters and they were more, like I’m saying, in your face, almost scary in a very – you know being arrested. And I think part of me, I didn’t want to – I am more of a soft spoken – I feel maybe for me it would be better just going, like almost… Because I did go out and talk with people and do talks and go all over the place, but I felt like for me maybe it was better to walk in and, look, I could be your uncle, I could be your friend – just like a normal person. And I thought maybe that would win me more, bring – people would be more receptive, ‘cause some people were turned off, even the gay community were turned off, some people in the AIDS community were turned off. I think at the time though, at the height of the AIDS epidemic, they really did a lot to help accelerate research, and there were some, especially in the US, they were very – they had some very influential people that were part of it. And I wasn’t part of ACT UP, I wasn’t. They used to have – I remember there was infighting unfortunately with a group like that. There was – not everybody, there was some real radical infighting. There was infighting at our society too but that was more like screaming matches. I just – maybe part of me didn’t want to be part of it, you know, but that’s. But I do distinctly remember in 1996, I was a delegate at this conference – it was the largest conference ever held in Vancouver. They had both stadiums and the convention centre, and they had shuttles going back and forth. Delegates from all over the world and ACT UP were there. They had demonstrations on the street, and I was walking – a whole group of us joined them. You know, there was – so it was – and that is when they announced the “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 32 new cocktail. It was very kind of dramatic and I knew people that were literally on their death bed that came back – that was pretty amazing, it was unbelievable actually. I was – this woman, I often bring it up when I see her, saying, “I remember we had to carry you,” we went to this retreat and “We had to carry you and I thought this is it, we won’t be seeing you. You are…” and she survived. I bring it up and she is still around – it’s amazing. But anyway, that was – it was interesting to see delegates from Africa, from Asia, from all over the world, and they had a special HIV area, like just for people with HIV. It was like – with food and with people, massage services, and very soft lighting, and kind of a place you could relax, and it was kind of like they brought in nice little lounges, and kind of like Ikea heaven. And so, there was a lot going on and it was very interesting. A lot of people came to our – it used to be 1107 Seymour – it isn’t 1107 now, it is another number, but a lot of people came. We had open houses, a lot of people came and we signed up a lot of people to our newsletter and that – yeah, we had delegates from all over the world. It was really pretty amazing, and it’s kind of funny, I met this beautiful Brazilian journalist who was living with HIV, he was at the conference and he was next to me. That night, the delegates were invited to go to the art gallery, Elizabeth Taylor was there, and she was going to give a talk. She became very big in the AIDS world and I was excited about that and I met this Brazilian guy and he said, “Do you want to go somewhere for a drink?” And I was like, “Yeah, definitely.” I completely forgot about Elizabeth Taylor and a few days later I was telling one of my colleagues, about the conference and I met this really hot guy. We ended up seeing each other after the conference – he was here for maybe a week – yeah, he was very sexy actually. So, I said, “I completely forgot about Elizabeth Taylor,” and he said, “You completely forgot about Elizabeth Taylor?” He said, “No hot guy takes the place of the Diva like Elizabeth Taylor. No hot guy – this is Elizabeth Taylor.” And I said, “I know, I kind of regret it,” maybe I just didn’t get to see Elizabeth Taylor. And he was saying, shaking his head, “No hot guy replaces a Diva like Elizabeth Taylor.” I saw Katherine Hepburn in person and Audrey Hepburn – yeah, I know. BK: She is pretty iconic. P: I know she is, do you watch her old movies? BK: Maybe a couple. P: She was beautiful, she was very, I would say New York. I was at my lover – my lover loved art and jewelry and he wanted to go to this jewelry store, Bulgari – it is a famous Italian jewelry store in this luxury hotel, we were just looking in the window and out of the corner of my eye I saw this woman walk by, and she kind of looked at us, and she had a little smile on her face, and I thought, that is Audrey Hepburn. Snd then I read the next day that she was in New York with her friend Valentino – he was opening this new boutique and she was kind of a spokesperson for his clothes, you know, and I thought that was up-close. And I saw Katherine Hepburn in a play in Toronto years and years ago, and then I saw, ‘cause I go way back, I saw Ginger Rogers, I saw her on the street actually. She was speaking at the – they give these talks after they retire, some of them go on the road and they talk at theatres, they show clips of their own films then they go on stage and they talk and people ask questions, they do like… Somebody I know saw, years ago, it was in London, England, it was – what’s her name? She is a very famous gay icon, she “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 33 has that voice, her and Joan Crawford had done work together. Anyway, she was very famous and he saw her in London and all these gay people were screaming and carrying on and it was Betty Davis. Have you heard of Betty Davis? You are kidding. You haven’t heard of Betty Davis? She is a gay icon. BK: I am not sure if I am familiar with her. P: Anyway, she was a big gay icon back in the day, like Judy Garland, kind of like on the same level. BK: Friends of Dorothy. P: Yeah, yeah, friends of Dorothy. BK: No, I just wanted to ask about ACT UP, because we talked a lot about the PWA society, and there were a lot of community responses, and they all kind of fit together some way. P: That’s it, and some had different ideas about how to deal with it. We were trying to be part – like sit at the table so to speak of, be part of this, have a community member sitting at every important table, so we wanted to be less radical, to be accepted in that circle and also be very well-educated. There were some people in ACT UP that were talking about very radical forms of therapy, not trusting the medical community - you know, they were trying to kill us – not all of them but some of them. We wanted to be, to have the respect and confidence of the medical and pharmaceutical community, so we were – like I am saying, some of our members, they educated themselves, they were… Some of these team members – I learned a lot myself about science but some of these guys, they could talk to virologists and they were invited to work on research studies with them and be – they would have doctors calling them around. Some of them had contacts in different parts of the world and doctors saw them like colleagues even though they weren’t doctors. They were learning from each other, it wasn’t a one-way street, so it was – we wanted to be – we wanted to have influence, we wanted to be part of the – we knew that, we wanted to be part of these expert advisories because we knew that this was where we could make change and accelerate. But ACT UP played the role of shaming, scaring, so they did play a role that was important. And occasionally it was a little misguided – like all of us, it wasn’t always perfect. So that’s my memories of ACT UP. And Michael Callen and his doctor who I went to see, and I can’t remember his name off hand, they coined that phrase safe sex. And all the famous people – Dr. David Ho and Fauci – and I got to see all of them, all the big superstars. BK: Some of them came out here as well, right? AIDS Vancouver flew one of the big docs early on in the epidemic to give a talk. P: I brought a doctor out from New York, Dr. Bernard Bihari – our society helped fund him, then he went to Victoria. We shared the cost and I shepherded him around, and he spoke at St. Paul’s to the doctors, but I came along, and then we had a public thing for the community. And so it was – we had more funding then and it was more on the radar. Now, it seems – I feel like I have to reinvent myself a little bit ‘cause I feel like this was like a career, it was like – now it seems like it is really not as – it has shrunk and it is just not – we just don’t have – it’s not, I don’t know, not on the radar as much. People are using technology a lot for information, they trust “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 34 their doctors more. There is still a need but now a lot of our community, people like who go to Positive Living, they are really dealing with multiple diagnoses, dealing with extreme poverty, addiction, so those are the basic things that they are focusing on, you know. So things – there aren’t the activists, as many activists ‘cause they are either passed away or they have gone on with their lives, and it is just more people like with – who are dealing with just extreme addiction and poverty, and people trying to look after their needs. There are still some small groups – they created this group for more middle-class gay men. They have created some groups that do stuff – dinners and hikes and stuff like that, but the… I have come to the conclusion, maybe I will be spending the rest of my life alone and maybe that is okay ‘cause I realize, here I am living with HIV, undetectable, but it scares a lot of people. And it’s – the dating pool has really shrunk and I can still meet guys and everything, but part of me is very content being on my own. I have an interesting life and I don’t just want somebody around ‘cause I am feeling a little lonely. And then part of me – there is this part that thinks, okay, I am at this age – I am thinking of this more and more. I am sixty-eight, the average person dies in their seventies, so it is kind of like, hey, I have to be very careful about like, you know… I want to really just enjoy, savour the rest of my life and so I am more reluctant taking on things that are just – I want it to be kind of, I have to think about it more. Hormones aren’t raging as much as they were in my twenties. I mean they are raging, but not as much as in my twenties, okay? BK: I’ll end on one final question which is just to bring this full circle, but as someone who has been living with HIV for almost thirty years now, which is incredible, do you have any advice for newly diagnosed or younger generations of gay men based on your experience? P: Well, I feel that – I tell people that I talk to, newly diagnosed – I am actually, in August I am going to be at Loon Lake – I am part of a team and we invite newly diagnosed youth, like especially younger people that – they have really kind of really focused on inviting them. And I feel they are in a position now where they’ve got a really big advances in medications, so my advice is really you are in a really great position to really have a great life and kind of work on things that are barriers – could be problems with addiction, it could be – be creative. You see, I have noticed now there’s – especially with young people, it is a trend, not just in Vancouver but in other parts of the world too, where there is this gap between the haves and the have-nots. And I meet young people – occasionally I have young people couch surfing with me and I have a couple coming this month. And they are from places – you know, like some are Canadian, some are from different parts of the world, and they are younger, they don’t have a lot of finances, and they can’t afford – like it is hard for them to even live in Vancouver. But what I tell them is, from my own experience, my own travels, what I am noticing is that there are young people who may not be able to buy a home or get a great job. I met these young guys from Spain – that things are turning around a little but there are just shit jobs, even though some of them have university degrees. But you see, what they did is they created this idea, it is a fundraising idea – they are working with a charity in Nepal that is a children’s school. And what they are doing is they are biking from Vancouver to Mexico as a way to raise money, and like a project – I was telling them maybe you couldn’t get a decent job, they don’t exist now in Spain for your age group, but so what? What you have done is instead of bemoaning that you have created something, you are getting more creative and you have the “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 35 time. In Guatemala – I have been to Guatemala three times in the last four years. There are little communities of foreigners that are living there that are doing work with NGO’s, they aren’t making a lot of money. Guatemala is one of those places that isn’t that difficult to stay, and I was studying Spanish there, and I lived in this place called yoga house – it was all these young people that have left Canada, left the US, but doing really creative – some of them, really creative stuff and doing little part time work. They can live very cheaply and so they are having more creative lives. So, I am telling people, you can – you just need to be creative, you need to think outside the box, you need to – there are… You know, I meet people in India too, and I tell people you don’t need a lot of money to do this. I explain to them, you can just – this is what you can do and you can live very – I tell them you can rent a little room. I was living in two rooms with my own bathroom for $120 US a month and they are like what? I am saying yeah, that’s – and you can, there are people who have been the five years, seven years, twelve years. They have just created a whole new lifestyle for themselves, so that is what I say to youth – be creative, think outside the box, because things are hard. It’s not – it’s tough out there for a lot of young people, and the ones we see at places like Loon Lake, they are slightly more marginalized, and they are – that is kind of what I have been talking about recently and listening and being encouraging and telling them, talking a bit about my life. They have this circle, it is very touching – what they do is they line up – at the opening ceremonies, they line up people in order of when they were diagnosed and then the facilitator – there are people who are two weeks, three weeks, three months, and then there is me, and people even beyond me. And the facilitator says, “Look around,: and she looks at the newly diagnosed and she said, “This is hope.” And she looks at us, people like myself, “And this is courage, and I want you to communicate with each other, see each other, realize there is hope. There is people with years of experience here.” And they have one of these people – they have these small groups that meet every morning and afternoon, with one person who is a long-term person meets with these newly diagnosed people in little small groups. So, they have – they are trying to help people, offer them services, offer them advice, and they have different people come in. And they have these challenges that they do and different rock-climbing things, canoeing, adventures – different things. I’d say that advice – be creative, think outside the box, get to know yourself, be grateful, find tools that you can use. I mean, myself, mediation and yoga have helped me in a huge way, so that is what I do, and makes me feel – I realize I have a lot, I am very fortunate. And then like I am saying, I am having this young guy from Vietnam coming to stay with me for four days and then these three young people from Mexico coming up to work in the orchards, so they are going to come and stay with me for two to three nights, and I guess it is my way of… I recognize that things are changing, things have changed. Years ago, real estate wasn’t such a big – it wasn’t on the radar and now I realize it’s – there are people that are really sleeping on couches and you are probably more aware of it, your age group. BK: Yes. P: It’s – I feel things are – it’s, yeah, it’s kind of tougher out there in general for – especially for younger people. And so anyway, they come to Vancouver, they come to BC looking to work. It is incredible, I was talking with a young guy from Mexico, he was staying with me a few weeks ago, he was saying somebody with no education – they are making, it is hard to believe, but 8 US dollars a day. Somebody with a good education, let’s say a teacher, they will make maybe 10 “HIV in My Day,” Anonymous (May 1 and May 10, 2018) 36 dollars an hour, and that is minimum wage here, so when they come here, they see that, so they can make more money picking fruit, they can make minimum wage, like 12 or 14 dollars an hour. They sleep in tents, they don’t pay anything in accommodation and they can make more money and then use that to do some travelling and stuff like that, so it is nice to be able to help them out a little bit, ‘cause things are – people are paying $35, $40 a night in a hostel, like a better hostel, so it’s… I feel they bring a nice young vibe with them and I get to practice Spanish sometimes, and it is nice for me – it is almost like my nephews and nieces don’t come out, this is almost like my surrogate nephews and nieces. Sometimes they stay in touch. It’s kinda cool. I meet young people travelling sometimes and we hang out, they come and visit me and sometimes I have stayed in touch over years. It is nice. Some I open up to about my sexuality, and some I don’t – I guess where I am at and how I feel, and sometimes I am a bit reluctant, a little fearful. or vulnerable. It is kind of interesting, sometimes it is right off the bat, I’ll just say, this is what is going on, sometimes no, sometimes how I am feeling at the moment. I feel grateful and healthy. I am – I have got health, that is so important – it gives you the freedom to – it opens up, so there’s – you can get – there is so many things you can do. It gives you a sense of freedom, more because you can start a new career, work, travel – you are not limited. And the irony, like I was saying before, I have really focused on wellness and talked to experts in the field over years I have had access to the best nutritionists, dietitians, like world experts, and I go home and I am doing all this research and I have time to kind of do that and go to the gym, so it is the irony. Here I am, years later – they told me there was no way you are going to survive – to feeling really great and being really active and people saying, “What are you doing? How do you do this?” And it is the best revenge. And so, being sexually active, still going out on dates with nice men – and it’s liberating, it’s… There is part of me that would have felt – I don’t know it is bad enough being persecuted as being gay and then dying at a young age with all the stigma and that would have been really hard, just to feel it is almost like punishment or you deserve this. You feel like maybe I shouldn’t have come out, maybe this is like – it would have been extremely hard on my feeling of self-worth, and it was for other people, yeah. So, it was – anyway, I wanted to survive, I wanted to beat the odds, and kind of, it is almost like become poster boy. It is like, hey you know you can – guess what? I am still around and I am still active and enjoying life and it’s kind of like the best revenge. Like I said, maybe when I am eighty-something, Oprah will be calling me, she will be crying and I will be telling her all about my life and she will be shaking her head – “I don’t believe this.” That is the fantasy, right? I am on all these talk shows for the moment, saying this is an incredible story, like you are kind of famous for fifteen minutes, maybe that is where I am headed. BK: Sorry, I am not Oprah, but I really appreciate hearing your story, and it is an incredible story. P: Thank you for being interested. It is nice to see somebody, this young guy who is really interested in history and interested in hearing these stories, and I think this is really cool. And where are you going in your career, like where are you headed? BK: I might just turn that off, if you are… P: Turn it off.