Interview with Darren Lauscher

17-10-23-DL.docx 1 “HIV in My Day,” Darren Lauscher (October 23, 2017) “HIV in My Day” – Interview 4 October 23, 2017 Interviewee: Darren Lauscher (DL); Interviewer: Jackie Haywood (JH) Jackie Haywood: Alright, well thank you for coming today. When did you first get involved in the gay community? When was that? Darren Lauscher: Oh, goodness… When I – well… JH: Or the gay life? DL: Well, it actually started in college, back over on the Island – Vancouver Island. I was attending college and had recognized that I was gay. And in that big picture, you know, exploring sexuality and all of those bits and pieces of recognizing, “Oh, you have these interesting urges that need to be scratched and itched,” so to speak. So, during college I was working over the summer at a friend’s – a colleague from college family’s restaurant up-island and was introduced to a couple guys, and it was the summer of love. So, that was the first real experience of sort of more gay culture because they were connected to guys here in Vancouver, there were some weekend trips and things. And seeing Vancouver in 1980, 1979, and then moving here in the spring of ‘80. So yeah, it was… JH: How was that settling in into the new community – a gay community as opposed to more rural? DL: Oh, you know moving from small town to big city – even though if you talked to a Torontonian or New Yorker they would scoff at Vancouver being a big city. But moving from the Island to Vancouver, that was huge. So, I moved over with a roommate, a straight friend from college. We both got jobs in the hospitality industry. We were both hired from college to start immediately – we graduated Friday and started Monday morning. So, mid-May 1980, I moved to the Vancouver and I wasn’t out to him, so that was interesting. We were in twin beds in a one-bedroom apartment and having – knowing you’re gay and wanting to meet friends and hookups and all those things that come with being a twenty-year-old. It was interesting. JH: Were you able to connect with the gay community then? DL: Oh god, yeah. God, yeah, that part wasn’t difficult. It was keeping that piece private because I wasn’t “out.” In the gay community I was out but in the straight community I was certainly not out. Certainly, some of the workers knew. Bosses were gay so it wasn’t a big issue – you know, hospitality. But, in that broader sense, I wasn’t out to family yet, so I had all those fears and phobias – that proverbial rulebook that sits on everyone’s shoulders, that everybody has but nobody can actually produce. JH: What was the community like then before AIDS. 2 “HIV in My Day,” Darren Lauscher (October 23, 2017) DL: Pre-AIDS it was – you know, it’s really hard to use words to describe it without a paintbrush in the sense that people from the moral right would call it hedonistic, all of those things, but it wasn’t that. It was really about embracing who you were as a person and allowing yourself to go, “You know what? The law says I can be a gay person. The law says I can have the shit kicked out of me as well in many ways. So, I have to walk this fine line of finding out who I am as a gay person and standing up for my rights, but also being well-aware that the police at that time were not really our friends in the bigger picture.” And there was a large side that disapproved and vehemently hated us. But as a gay man, when you were in the gay world it was huge family – huge family because there weren’t enough of us to go off in the paths that we have been able to go off to as the city of Vancouver has grown. We had to party together in many ways. And yes, the boys split off to go into a back room and have fun and whatnot, but we were a lot more connected. I went to New West pride this year and I said to some friends I was with, “This is Vancouver in the early ‘80s. This is what pride was like in the ‘80s – small town, limited dollars, everyone coming together, playing together in the same sandbox.” No saying, “Oh you forgot this or that.” There was none of that bitching. It was about coming together and we knew that we had challenges and we knew we weren’t doing everything we could possibly do, but a lot of that had to do with capacity and dollars. We wanted to have big dance parties but big dance parties cost big bucks, because you want to bring in DJ’s from other parts of the world and you want to have all the lights and bells and whistles and glitz and glam. But that costs money, that’s corporate structure. So, it was interesting. Did we lose our sense of nativity as we grew as a community? Yes. We also had the darker side rear its head in the bigger picture. We do have challenges, we do discriminate within community, we do have stigma within community – we have all the things that normal society has. Just because we are gay doesn’t change that. We had all those issues. JH: When did you first learn about AIDS – you and your group and your experience? DL: That would be in the early-‘80s when it started to show up in the news, and it was just sort of those big headlines of unknown gay disease. There is no name for it in the beginning it was just showing up in young guys. It was all these diseases that old people would have that are now showing up in twenty-year-olds. The death count was being posted. And I remember having a conversation with my mom in the backyard and she goes, “Well, that gay cancer” – it had come up at that point, and that would have been ’82, so early years. And she said, “I’m concerned you’re one of those, and so as a mother I don’t want to have that happen to you.” So, I was like, “Oh mom, that’s in San Francisco! I have never been there, so how would I get it?” – you know, naive young twenty-something. JH: What was the reaction among your circle? DL: The circle of friends? It was on our radar, certainly, and then the community started to respond in the sense of community outreach – how to use a condom. JH: Could you flesh it out a little bit? 3 “HIV in My Day,” Darren Lauscher (October 23, 2017) DL: Yeah, there were different community agencies. Public health was like, “Oh, we don’t know what the hell this is. We are aware of something happening, so as a community we need to respond.” So, that was the beginning of the safer sex messaging. So, it was like, “Okay, gay boys. You haven’t worn condoms, really, in the early years” – because why would we? We were not going to get pregnant. And yes, STI’s were out there but that was every six months you made your appointment to the clinic to get tested, and you just built that in. It was like an acceptance of going grocery shopping – you knew there would be a cash register at the end of the line that you would have to pay. JH: Did you recognize the severity of it or was it something, like you said, in San Francisco? DL: Not in the beginning, but then as the tidal wave came to the shores of Vancouver, yes. Yes, the boatload of fear that came with that – and still recognizing you’re sexual, so how do you… it was that disconnect. That was happening. Because we were still hooking up, but there was a disconnect because – and then the stereotyping comes. It became, “Well, you look okay. I look okay. We don’t know…” Because we don’t have testing in the ‘80s – that didn’t come until a little later. So, unless you’re looking dead, it was, “Hey, we have chemistry. Let’s go do it.” And yes, condoms came in and having to negotiate on how to use them – and not liking this, or they come off or don’t come off in the bigger picture. JH: How did people work around that and still connect with each other in that time? DL: It was interesting in that time because there was a lot of fear and phobia of the unknown and then of what you will do sexually or not do. I remember a couple guys would say, “I have to triple bag it.” And I would say, “But I haven’t even touched it.” And they would say, “That’s okay. For my peace of mind, I’m going to triple bag me, then I will feel okay, and then I will only take head but I won’t give head. I won’t fuck, I won’t receive” – all of those bits and pieces. “I will only do frottage.” So, it was like navigating all of those different – all of a sudden, it was like being at a restaurant buffet line and you were like, “Wow, I am not at the part of the buffet that I might like but I have to go through this buffet to get there,” if one can use that analogy or metaphor. It was challenging – it was challenging. JH: Did it put a halt to relationships or closeness in the community? What was the effect on community? DL: It was an ice age for me. It was an ice age because as soon as you knew somebody [who had HIV], you had that flight piece happening, and then it was like how do you deal with your own internal thinkings of, “Who have I slept with? Who have they slept with? Are we connected? Will it be me next? And if I am seen with them, what will my friends say? What will society say?” And so, all of those pieces became really challenging. JH: What did you experience that your friends would say if you were seen? DL: I was in a car – it would be ’87, 1987 – and I was with friends, but also they were business colleagues. And somebody was walking down the street and someone would say, “Oh, he has AIDS,” and there rest of the people in the car would be like “[Gasp], oh my god! He’s got to 4 “HIV in My Day,” Darren Lauscher (October 23, 2017) come out of my rolladex. Oh, I’ve got to tell so-and-so.” It’s like, “Oh, we hugged at a party once!” It was all of that fear and they were dismissing this person. And I was thinking, “Wow, these are my friends and that’s also a friend walking down the street I don’t know well but I know of. Oh, I’ve got to rethink this. This is really harsh because what if I am positive? What will they do to me? What will they say about me, because they are my employer?” So, all of those types of things are going through my head. And that person walking down the street – yes, they are positive and guess what? They are still alive today and they have aged very well. JH: What did the government response look like to you or feel like at that time? DL: Well, federally, it was there because they’re now coming from a public health perspective, so they don’t really care about the individual – they don’t want this disease to spread across the country. So, that was reaction at a federal level. At a provincial level, we had Bill Vander Zalm, and his solution was we will just take one of our costal islands and ship them all there and we can ship the lesbians there to look after them. So, basically his idea was a World War Two internment camp, and if they live so be it – and let’s just hope they don’t. JH: How did the community react to that? DL: We weren’t very happy. And some amazing members stood up and said, “Fuck you,” and did lots of public six o’clock news type events to raise the profile that, “Yes, AIDS is here. AIDS is deadly but we can’t allow people in power to isolate and disregard people and Canadians with universal health care. We have rights just like everyone else.” JH: Do you think that was effective? DL: Some of it was, in the way that it got the population talking about it, good and bad. Because if you don’t talk about it and it’s not there, it’s forgotten about. JH: So, what was your experience of how the public reacted to those types of things? DL: Well, in the early days before legislations started happening, you could be fired from your job, you could have your mortgage pulled – you could lose your job, you could lose your home, you could lose your rent, you wouldn’t be rented to. So yeah, lots of things – disowned from family, disowned from church, refused service in restaurants, and refused service in hotels. JH: Did you experience any of those things? DL: A couple pieces of those. But fear of work and fear of rent – because I rent – and so, luckily enough that the people that were the property managers, they moved on and got some much more enlightened property managers who realized that gay guys are actually good tenants and improve the value of the building, because they are great at decorating – stereotyping here – and usually you didn’t have problems with gay guys. They weren’t transient in that sense. So yeah, I think just the overall societal fear was very palpable. And as a young gay guy seeing that and seeing the devastation it did to families in the bigger picture – but devastation to the individual… it’s heart-breaking. 5 “HIV in My Day,” Darren Lauscher (October 23, 2017) One of the guys with roommates lived on the eighteenth floor and one of them was disowned by his family and there was a family reunion. And on his father’s birthday he phoned and said, “Can I come?” And his father said, “I don’t have a son,” and his mom is in the background saying, “I have to support your father.” And he said, “Okay.” This was early that evening at ten o’clock – they [the roommates] had some words and talked. “How was your day?” – that sort of thing. And he said, “Oh, I can’t go to the family thing this weekend.” And he said, “Oh, that sucks,” and he went to bed. An hour or so later, banging on the door – it’s the police. He had gone over the rail. So that wasn’t the only suicide, but that’s the devastation. So, to those parents: thank you. I hope you’re proud. JH: Did you want to take a break? We can take a time out. DL: No, this has to happen. This is part of the process – it’s part of our history. This is one of the dark parts of our history. JH: So, we talked about the government and a bit about families. How did the medical community react? What was their response? DL: Again, it’s sort of all over the map. Some rose to the occasion and were amazing, and some – my god. It was hell. I have an amazing family GP who I got in the very early ‘80s, and he said, “You know, we are going to go through this together, whatever that together is. And as a young gay guy we are going to walk this journey together.” JH: So, did you experience your friends having the same type of experience? Do you think this was common in Vancouver? DL: Certainly not common. I think there was a small percentage of great doctors and great nurses – great receptionist, great interns, hospitalists who, as I say, rose to the occasion. And there were some that the fear – I can remember going for lab work and having the person who was going to draw the blood come out in the common area to call my name in full hazmat. JH: Could you describe what that felt like? DL: Well, it’s interesting to have a room full of people waiting to have their number called then to have the staff that normally comes out in a gown, or white coat, and then have someone comes out in full hazmat and calls your name. You want to feel like a pariah in a room real quick? It was an interesting experience. Those were the early days. JH: How did gay men that survived the epidemic – how did they survive? What were the ways and tools? How did they make it? DL: I think you are drawing on your close social circles. You were also being drawn into the drama of death, of attending funerals. Like those early – until the later-‘80s, early-‘90s, I attended a lot of funerals. And for the most part you would come away frustrated and angry because the families were white-washing, that their son had died of a brain cancer or a liver 6 “HIV in My Day,” Darren Lauscher (October 23, 2017) cancer, or some cancer. That was much more acceptable than to say, “My son was a young gay man, proud man, who we fully supported, who died of AIDS.” We didn’t hear that very often. So, we would attend these funerals and you would have the family – the grieving family. Then you would have the friends of the family, and then you would have this back wall rows of “Who are all those guys?” and some woman in that picture. But it was the gay friends and the family. It was like a wedding - the bride’s side and the groom’s side, but in this sense it was the family side and the gay side. JH: So, did that tend to draw the community together? DL: You know, it drew us together in many ways. It made some of it fragmented, because there was those folks who were saying, you know, “We are there to show support. We are there to honor the person who has passed. And we don’t call the family out in their moment of grief.” And others are like, “Fuck that. They need to know that their son is gay, because they know that their son is gay and they are ashamed. They have not dealt with it and they are ashamed of what their family and friends will say if they find out their son has died of AIDS. We get that, but it’s not going to get better until we start dealing with those types of things,” because it was ugly. We grew together to support one another but to support, in the case, the partners of the partner, to go back to their home to find that their home is now a black plastic bag of some things in it on the door step, to find out the parents have swooped in, changed the locks because they could. The law was on their side. JH: Did that happen often? DL: In the early days it happened quite often. It was amazing: you had a successful son who you disowned – who you wouldn’t call, who you couldn’t admit had AIDS and died, but you sure as hell could arrive on the doorstep with a locksmith and the sheriff in tow to take possession of their condo or possession of their apartment to clean it out of contents that have value and dismiss and scorn and threaten with legal action their son’s partner. JH: How did gay men cope, here in the city? How did all the barriers and pain – how did we cope here in Vancouver? DL: We also tried to party, in the sense of with all the death and dying and the grief, we still had to laugh – we still had to live. And so, there were some amazing parties in the ‘80s and ‘90s that rand their course, but at the time they were the bees knees. They were just amazing, and as I get older it’s interesting to watch every generation that have those events that make them think “Wow, they invented it.” It was like now I understand where my parents come from in a sense, where you had collective moments to bring community together and you celebrate. JH: Could you name some of those events or parties? DL: Gay Games, 1990. That was a pivotal moment for North America, especially, but for the rest of the world – the gay world that travels to big events. Vancouver was sort of this holistic healing moment in the AIDS crisis. San Francisco, L.A. had the games – it was devastating, the loss, because you could see the loss, because faces from the athletic community weren’t there. 7 “HIV in My Day,” Darren Lauscher (October 23, 2017) And everybody was reeling from that – that sense of greater communal loss, and Vancouver – somehow, we pulled this off as a community. We came together to support – monies came out over everywhere to support. City hall got on-side, the province got on-side, the feds got on-side – not in the ways they could have but they understood the greenback, the dollar. And so, when city hall and the hotel association – when our hotels are full all the way to Hope, shut the fuck up and get on board. We have not seen this for a very, very long time. They are dumping, the week they are here, millions into the provincial coffers – get on side. But from the gay community perspective it was, “What I can do to help? What can I volunteer at? What can I do to make our world guests welcome?” And it was this amazing outpouring of love and welcome and, “We are not going to put up with shit from society.” And there were occurrences that happened from people who did not believe gay people should be allowed to exist – tagged and graffitied buildings. And the next day people came out with scrub brushes and went, “Nope, this is not acceptable. Not acceptable.” There was an attempt by a guy on Davie St. where an incident occurred. He got lippy and took a swing at a guy, not realizing the guy he took a swing at was a wrestler, who put him on the ground real quickly. And the community was like, “You’re not going anywhere buddy. You’re going to jail. You have assaulted someone – you have assaulted someone in our city.” That made me really proud to be a Vancouverite. But it was that underlining holistic piece that the world left Vancouver going, “Wow, we feel better about ourselves. We’ve gone through some dark days, but Vancouver gave us its light.” That there is light, and that we can move forward. And yes, there will be more death, we will lose more people, but we can still celebrate life. JH: Was there a cloud around AIDS or HIV during the gay games? DL: Oh goodness yes, there were a few pastors who were predicting the end of the world, and that hellfire and brimstone would rain down on Vancouver. And the sun came out and there was a double rainbow. But they turned to the sky and said even god loves us, because he gave us a double rainbow. Lots of history in that sense. “That’s the lord shining upon us.” JH: Could you talk a little bit about the drag community and their involvement? DL: Huge. The drag community, the Sisters of Perpetual Indulgence – you would name an event and they would pick up the phone and say, “Can you help?” “What time do I need to be there and could you push it back a little bit? I need a bit more time for my make-up.” But they were always there passing the hat to raise money for whatever the cause was for HIV and AIS. And by this time, in the later-80s, it had a name. It wasn’t gay cancer or GRID, it wasn’t AIDS anymore. It’s still AIDS in the public’s greater mind but it’s HIV. JH: So, having a greater handle on what it is and what it isn’t, how did that effect the community? DL: Well, the community was still in the grips of fear of testing. “Do you want to know or don’t want to know?” Because we aren’t at ‘96 yet. The court system hasn’t criminalized yet. But it’s about understanding, “If I know this, what will that do to me? What will that do to me physically?” I can know – I can kind of understand the projection of how the disease progresses, 8 “HIV in My Day,” Darren Lauscher (October 23, 2017) so I have all that fear and phobia to work though. But then knowing – how is that going to affect my social life. How is that going to affect my status in society? Will I lose my job? Will my benefits be cut off? All of those pieces that you start to think about. And then, “Oh, I have to be an adult here and maybe write a will. How do I protect myself from them? How do I protect my friends and my partner so they get something? How do I make it legal in the mine field that that was?” Law was interesting then – law wasn’t on our side. JH: Were there people to consult with? Organizations that could help? DL: Yup, by this point we had many AIDS service organizations that had begun. So, fundraisers and things, but again it was that societal fear if you’re seen crossing their door step – that could be your social death now, even though you’re healthy, you’re not positive, you’re a negative person. So, you had to go through that process – what did that mean to you? Are you able to surmount that barrier of societal pressure or are you one of the shining white knights to go like, “Fuck society, I need to do this, because it’s the right thing to do. It’s not the easy thing.” JH: Did you belong to any of those groups? DL: During the early days I did not, because of societal pressures on my shoulder. You know, you I look back on that and think, “Wow, I wasn’t a brave person.” It took a journey, my own journey, to step through those doors. Could I put money in the basket in the bar? Yup, but could I set foot in one of those organization to help? Nope. Do I regret that? Yes, but that was the choice I made at that time and I have to live with that. Do I darken their doorsteps these days? Yes, I do to a great extent. JH: Where you an activist or a grassroots person? Did you experience any of that or was it known to you? DL: I knew that those pieces were there, but I didn’t have the balls to be on the 6 o’clock news. You know, I look to those people who did the things and they were amazing men and women who paved the path of general society to understand there was a disease out there killing people and we couldn’t just brush it under the rug. JH: Do you remember any of those events or things taking place? DL: Here in Vancouver one of our warriors – I’ll use the name warrior in that sense – sprawled across the premier’s limo as they were attending a theatrical event and smearing red ketchup across the windshield and the limo hood. “Oh my god! The world is coming to an end.” The premier being outraged and the societal moms and political hacks being outraged. And then being carted off by the police who were trying to put on their rubber gloves as fast as possible. But that’s activism – that’s democracy at its best. Some people don’t agree, but that is democracy at its best. JH: Outside of the gay community, who else played a role in the activism? What types of people? 9 “HIV in My Day,” Darren Lauscher (October 23, 2017) DL: You know, obviously, just from a pure economic standpoint, you have to look at the areas that were impacted. So, Hollywood – the actors, actresses. It impacted Hollywood huge, it impacted the hospitality industry hugely, it impacted the services around, hair stylists, interior design community. It even touched into the athletic professional world – NBA, Magic Johnson – horrifying for middle America. But then, “Oh, he’s just one of those black guys anyways.” JH: Here in this city around care and support, outside of the doctors and nurses was there a group or were there people that helped? DL: Yes, there were some amazing philanthropic families, some big families with big dollars behind their names who stepped up and made it their mission to take on the cause. Leslie and Gordon Diamond, the Belzbergs, the Coens – big, big names, social economic generator families. It affected them in the sense that they lost hair dressers or interior designers – these are people who touched their lives. And yes, it’s stereotyping and all that, but they are still people who were affected by this disease. JH: Do you think that people migrated to Vancouver for the safety and security and that? DL: Oh totally! First you look at any country in the world and you look to their big cities. Oh, funny: their gay population is bigger than in rural areas. Of course, we migrate because we want to be with our new family. That’s the nature of humanity – we migrate to be with like. And the big cities was where it was happening in Canada: Vancouver, Toronto, Montreal. Now you throw the disease into the picture and you look at what province has health care systems, even though we have universal health care. BC was the leader that said, “Oh, if we are going to get a handle on this disease we need to make sure that people get the drugs in a timely matter and that they are covered, that the cost is not a barrier.” So, BC is at the forefront. Every province has some type of a mechanism to get drugs to people but a lot of them are very convoluted and very challenging. BC said, no. There is no co-pay, must be poverty stricken, must be whatever, whatever. Everybody, regardless of your socioeconomic status, you get the drugs for free, done out of the Centre for Excellence at St. Paul’s hospital here in Vancouver. Vancouver got it right. Vancouver has some - had some – some have retired – amazing people in the health care system who recognized if we are going to fight this disease, then we have to make it as easy as possible for those effected by the disease to get help. JH: So, with the new drugs in 1996, how did that shift community behavior, relationship with each other? DL: You know, it was interesting in the late-80s, early-90s as conversations I have had over the years with doctors about, “You know, we are trying anything and everything on the shelves. All of the drugs we have for other diseases we have pulled off the shelves and if you would be a willing guinea pig, we can test to identify seroconversion, positive versus negative. You know, we are offering you these drugs hoping for a miracle.” So, the one drug that comes to mind is AZT – lovely AZT. You know, it has its role to this day. It still has a role to be used in a manner that’s appropriate. But in those early days we threw the rulebook out the window and said, “Well, if one pill does this, what will one hundred pills do or ten pills?” And so, we killed a few people along the way. The community recognized that to be a guinea pig you ran the risk of not 10 “HIV in My Day,” Darren Lauscher (October 23, 2017) only dying from the disease, but you ran the risk of dying from whatever drugs are going to be tossed at you. But when you sat across from the doctor and he said, “You’re going to die and you’re going to die soon. What’s your decision? Do you try this or you don’t try this? This might prolong your life, but I don’t know how long, but it will give you some more time. This we know will kill you soon. I can’t give you a date but it’s not looking good, because, you know, your blood results are coming back and your CD4 counts are falling and falling, and now you’re showing opportunistic infections.” JH: Was there people that wouldn’t do it? DL: Yup, I was one of them. JH: What was the conversation like with your friends? DL: You know, I didn’t have the conversation with my friends, because none of them were positive. My close social circle weren’t positive, they were negative, and so trying to educate them – and not realizing that that’s what you were doing at that time – was a lot of work. It was a huge amount of work, because it’s hard to describe fear of the unknown and make it tangible so that they can understand it, and how it would affect their life. It’s really, really hard to have that conversation to get that message across without hitting them upside the head with a two by four to go, “There’s pain.” So, it was with my doctor. We had long discussions, more than the five minutes of billing time they are allowed, but I am thankful for that. But we did come to an agreement where he said there will come a time where I will tell you to piss or get off the pot. And that’s been our relationship which I am thankful for, because sugar-coating your death is not going to make your death any less a death, so being able to navigate those conversations is really important for me at least. JH: Do you think people went underground? Do you think people stayed away from doctors, had blinders on? DL: Oh yeah, there is a number of guys I can think of who stopped dating, stopped going to their doc, isolated – isolated from friends, family. And for some of them that was really unfortunate because they died alone, they died in fear, or at least to me that’s what happened. For some, they made a decision to exit – to step off the balcony, the extra sleeping pill with that martini in hand in the bathtub – “Oh, he drowned. Hit his head on the bathtub and drowned.” Oh, interesting. What was the drug in his system and what was the martini glass on the floor? That’s a pretty good indicator. Do I fault them? No. JH: How should we remember this as a community, this experience? DL: I think it’s important that we don’t sugar-coat it. I think we need to show all the warts of it. In the mid-‘90s, later-‘90s when the drugs were past sort of the first poisons, we had light at the end of the tunnel. The side effects were pretty disgusting. But there was still guys choosing to go off their medications and accept that they would die, and knowing a number of them and having conversations with them and other friends, and other friends just being horrified. “How can you do that?” And going, “Well, right now this is all that we know going forward, so if my body, 11 “HIV in My Day,” Darren Lauscher (October 23, 2017) every time I take this handful of pills, makes me throw up, shit myself, have sweats – all of those things, is that living? No. Not for me it’s not. So, I choose to stop. I choose to live out my days in whatever way shape and form they happen. And if you don’t choose to be with me, that’s fine, I can accept that. And there might come a day where I don’t want to see you anymore because I don’t want you to see me waste away, and please accept that.” So, I think that those people were extremely brave and gave me a new respect to the whole process of death and dying, and understanding it better. JH: Are there conversations today among gay men about death and dying? DL: It’s different now, it’s shifted. It’s shifted in the sense that you know the drugs have improved. Over that span, from the ‘80s where there was nothing, to the mid-‘90s where there was glimmers, to now where there is normalcy – as you sifted through the pill regimes where the regimes failed and that hell. “This new pill gives us another year, or two years or five years.” “These, people, will give you near normalcy – this pill is normalcy.” So, it’s like oh, as a twenty- year-old – if I had that now as a twenty-year-old, you don’t quit your job, you continue on with life. It’s just like getting diabetes – it’s not, but that’s how it’s being messaged out there. Versus, as someone who has lived with the disease since ’85, I have written a few wills, I have thought of what songs I have wanted to play at my funeral – those have changed over the years, it’s part of the process – planning a quilt in my mind, because we for a decade had the AIDS quilts, which were huge for coming together to express loss. JH: Can you talk about that a little bit – the quilts? DL: I forget – they came out of the US, but here in the city when the quilts came to Vancouver it was big. It was ’91 that they came, at the art gallery – it was the main exhibit. They hung some in the atrium in the mall. Yeah, it’s just amazing. JH: Because it was a visual? DL: Oh yeah, it was in-your-face. You know, you would have to be a cold-hearted bastard with no feelings not to be moved when you saw them and you recognized that that was a somebody. That person – that’s a person, but they may be a baby, mother, daughter, a son, or father – it was just somebody. And that people came together to honor their memories – that’s huge. And yet, as somebody living with the disease, you were like, “Wow, will my friends and family do this for me?” It was healing and yet it wasn’t, because if you didn’t have good relationships, would you be remembered? Would you mean something to anybody to take the time to make a quilt? So, it was beautiful and yet that fear of did you mean anything to anybody? Would you be remembered? Interesting piece. And yet, standing in the art gallery, a lady friend who was older than me had come along someone we knew’s name and quilt, and we started balling and talking about the new wonderful doses. And they came along with a box of Kleenex, and they didn’t say anything, they just put it into our hands, and that was it. It was just a quiet cathartic moment. Interspersed with sobs echoing through the halls. Beautiful yet sad. JH: How can we express some of that history to the younger generation of gay men? 12 “HIV in My Day,” Darren Lauscher (October 23, 2017) DL: Well, that’s interesting because I actually am fortunate enough to do volunteer work at UBC talking to classes of future healthcare providers. I will be talking to a cohort of students tomorrow night and one of the ways I try to explain that history is – and it’s difficult because a lot of them were born when things were better, they don’t have that experience. So, how do you make something, really, that it is a part of history tangible here and now? So, what I do is stand up to the guys: “I am going to tell you my experience of being through those dark times.” So, I will ask someone to stand up, and the class will go, “Oh, he’s going to tell them he has AIDS.” Then I go, “These are all your friends and they are all dead. You have buried them in the last two years. And just so you know, this social circle of your friends you have buried three times over. You have attended their funerals, you have held their hand as they died. And the two of you, you will be negative and you will stay negative. You will seroconvert, however you will live because of the medication, and the advent and changes in the medications. That’s my life.” [Laughs] It’s pretty hard, it’s kind of harsh. A few of them will end up in tears because they get it. Some will be on their phones and that’s just where we are at with technology. But I know I have sent a message to the greater room that they can kind of understand, because when you visually give them forty classmates and thirty-eight have been told they’re dead – in that bigger picture now, think of all your acquaintances and think of that’s two times over that you buried and that you have to make new friend over, and that’s you social circle. It’s kind of hard. I said, “But you’re also going to be future healthcare providers and that is also your clients. Your clients will die on you. Your patients will die on you. That’s part of humanity. That’s part of the circle of life. Whether die of AIDS or different cancers or car accidents or child birth – it happens. JH: As a community, a gay community, have we done a good job of remembering? DL: I think we can do better – in many ways, we could do better. We could have done a lot worse. Like in the sense, you know, we have the wall – the AIDS memorial wall. That’s lovely. The controversy around it – whether or not we do something or not something and whose names go on it and all the legal finagling surrounding that. Around Spring we have the AIDS vigil. It’s not very well-attended – I admit I don’t attend very often. For me, it’s very traumatizing in many ways. It’s wonderful but it is traumatizing at the same time. Yeah, we do some interesting things. AIDS Vancouver had their thirtieth anniversary a while back. It was amazing, and to go I knew everybody in every vignette I was at. That community conversation. That I knew “patient zero,” even though it’s a fallacy. I remember the conversation in the room. JH: Was he blamed in the early days? Can you talk about the reaction to him? DL: He was blamed. He was a pariah, but I think in many ways, society – we lose common sense. And you go like, “How can one person be, you know… How can they be the sole vector? That doesn’t make sense.” And common sense finally rears its head and goes, “Hello! No, that’s an impossibility. There are many vectors that happened.” JH: Did the public buy it? DL: No, we love to tar brush somebody. That’s human nature – make somebody else responsible for this. “I don’t have to own it, I can blame somebody else.” And it’s easy to make your theories for the press, create those great headlines, whether you work in HIV or are anti-HIV. Some of 13 “HIV in My Day,” Darren Lauscher (October 23, 2017) the wonderful pastors in this world from the Christian right or any other religion for that matter certainly loved to use those to generate headlines and blame. “Hell and brim fire will rain down upon us. See, they caused this.” JH: What would be your advice for medical professionals in dealing with a wave similar to this, thinking back? DL: Thinking back… Well, SARS – SARS is a good example: world phenomena, it’s transmitted – oh, it’s airborne. “Oh, Jesus, we have to do some very major preventative…” HIV is actually really hard to get – you have to actively do something to acquire it. SARS not so much. JH: About getting it: treatment as prevention – what are your comments about that? DL: At first you go like, [sigh]. And then you realize, you stop and think, you take the second sobering thought, you think, “Of course that makes sense.” If you want to treat a disease – if you get a headache, you don’t say, “I am going to suck it up and fight through this.” You go for an aspirin, you go for a Tylenol. Same idea, same idea. Yes, there is more things to think about with it – this is not as simple as an aspirin. HIV treatment, this is basically chemotherapy on a daily basis, especially in those early days, with the side effects. Now, not so much. Yes, there will be side effects but there are side effects from getting your flu shot – you got a sore arm and are shaky, achy, but it’s your body’s immune system kicking in. So yeah, treatment as prevention at a societal level – making me undetectable. Undetectable equals untransmittable. I don’t have enough virus in me circulating, so if we go on and have full-on great hopping sex, I can’t transmit. That’s the science – that’s the proven science. JH: Is the younger gay community tapping into that, or do they have faith in that? DL: I think it’s messaging that we need to pound into the general society’s collective brain in a better way. We are not getting the messaging out there. Even the healthcare field isn’t as accepting as they should be. When I talk to folks within the healthcare field, some of them are like, “Oh, I don’t know.” You know, it’s fears, phobias coming up – fears and phobias. We had thirty-five years of great death marketing around this disease. It’s hard to flip the switch overnight and say, “Everything is sunshine and roses. Get back to fucking how you want.” It’s not quite that easy. We are very good at fear in messaging – fear and blaming. But we need to get the message out. If we are going to normalize society and understand that this disease is just another disease – we have treatments for it. One day we will have a cure for it, one day we will have a vaccine for it, but right now we have a treatment and prevention regime that can keep the population safe from transmission. JH: If younger people are becoming HIV positive, where are we missing? DL: We are missing the boat in the education field. Provincial government, education ministers have to pick up and own – they are not budgeting appropriately to their school boards. They are not having these good conversations. And having talked to the ministry-level and listen to them pass the buck, it’s really quite appalling. I don’t care what religious background you come from, 14 “HIV in My Day,” Darren Lauscher (October 23, 2017) but you need to understand the facts and you need to get those facts out to the generation of students coming out and becoming sexually active. They need that information. Maybe if we started holding officials liable for seroconversions and deaths, maybe we would have some changes. It doesn’t help when we have a legislative body at a federal level who won’t get off their collective thumbs and tell the supreme court to stop prosecuting and criminalizing HIV. We have no HIV criminalizing laws in this country – we use a whole girth of other law to cover HIV. What it doesn’t take into account is this amazing science progression. We are still using archaic law around potential transmission and so we are using law that doesn’t fit, and our legislative body is not doing anything about that. That’s a crime. And we don’t prosecute any other fricken disease in this country. Even when public health has to chase down tourists with TB – active TB – and then immunize planeloads of people, we do nothing there. We do nothing about the anti- vax parents whose kids get whatever – measles, mumps, whatever – and transmitting, children do die. We don’t prosecute there. So, why are we prosecuting HIV when a person can be on anti- virals and be fully supressed and not have enough disease in their body to transmit? We are still very good about this. So, parliament get off your collective thumbs and actually do something. JH: Thinking back on what we touched on in this so far today, is there anything you would like to talk about that comes to mind that you would like to tell us about or expand on? DL: As a gay person – just as a gay person, I think, you know, we have done some amazing things here in Vancouver. Gay marriage – it took us awhile, but we got on board. We were one of the first countries to get on board. The world kept going, nobody died. Of course, divorce still happens, so that’s lovely. We have moved on to the idea that having two fathers or two mothers doesn’t make the kid gay. They grow up in a loving home and they are wanted – that’s pretty amazing. Our ability to deal with seniors and the whole idea of aging and senior population, there is some work to do in that area – we certainly have some work to do in that area. You know, seniors’ homes are slowly adapting, but that’s a big hard push. You know, it’s not that the home itself – the staff might not be homophobic, but the patrons might be homophobic and it’s kind of hard to change generational thinking. And by the time you get to an old age home, you don’t have a lot of time to work with. So, we need to do a lot more work in that area to value our seniors, our gay seniors, because we have amazing gay language and gay humour that unfortunately our society doesn’t always understand. It’s a shame we are shoving them back in the closet. We have gay banter – I am sure there is lesbian banter in that big picture. You know it’s terrifying to think we will have to go back in the closet because we are gay, or going back in the closet being gay and HIV+, and that I might be still sexual, and how we navigate all that. So that’s an area that we can certainly do better. I think we have a huge area around stigma. We need to work on discrimination, understanding humanity as a whole, our different ethnicity, our cultural pieces. We need to stop pointing fingers. We need to start collectively thinking, “How can we move this forward in good ways as society as a whole?” – understanding that we can’t be blaming segments of society for something that happened three hundred years ago. That yes, we recognized those things happened, but if we keep going back to, “You did this, you did that” – well actually, I didn’t do that. My forefathers did that. But how can we address the crap that came with that, to move us collectively forward in a good way, and why do we stop there? Why only paintbrush that group when we know humanity as a whole is pretty discriminating in the big picture. Humans have done some pretty 15 “HIV in My Day,” Darren Lauscher (October 23, 2017) nasty things to one another, and we need to own the bigger picture to move us forward. That’s a tough one, but conversations are beginning. Will it happen in my lifetime? No. I would be foolish to think that we would resolve some of these major issues in my lifetime. I am just happy they have new drugs. JH: So, we didn’t think that we would age – gay men in the ‘80s and ‘90s never thought about getting old. Was there any conversation? Did people stop saving money? DL: Oh, for sure! Life stopped like that. You got your diagnosis in the ‘80s, you’re going to be dead next year – that’s the reality, that’s what the science showed. There were no medications. So, “Oh, I think I need to top up my RRSP this year.” I don’t think so. JH: When did that start to shift? DL: Until the later-‘90s, early-2000s, it started to normalize. You could see there was light at the end of the tunnel. But in the late-‘80s, early-‘90s, no. I remember working and that conversation was going around the office: “How much are you going to put away this year for your RSP?” “Oh, I have to think. I know the deadlines are coming.” Everyone in the office knew how much everybody was doing. And you would go, “I don’t know if I will be here this time next year, if I will be alive, and how do I tell them? How do I have that conversation with myself? And then to have that conversation with my co-workers…” You didn’t, you just sort of sucked it up and laughed and said, “Oh, I will have to think about it,” with the reality of I probably wouldn’t be alive. JH: And now you’re sitting here and talking about senior homes. DL: Yes, I am alive. I have no RSPs – I left the work force. I cashed the RSPs in to do that holiday you do as a senior, only I did it at thirty-five. I sat on a beach for eight weeks in South East Asia, naval gazing and using it up. “Well, I have no kids. I am sure as hell am not going to leave it to my family – I mean, I love them but no. I want to use this.” But you need to understand in all this is that every time you saw your doctor in that bigger picture it was about “If we can just keep your CD4 at this level, we keep you alive another month or two. If you take the drugs religiously and fight through the side effects – yes, I know they are horrific but they will keep you alive a few more months, another year. There is something else in the pipeline that’s this – you know, we can get you there. If we can get you there when that comes into the market, we will have more hope. You gotta hang on.” It’s really hard to take fifteen years of death and dying messaging of just hanging on until the next pill comes along – it does something to you. You don’t flip that switch going, “I’m going to live.” No, you’re too busy running to the bathroom before you shit yourself again. It’s those pieces that you need to understand. I was running with friends – I used to run for many years, and I was running with a friend I had not seen in a bit who lived in Whistler. She was asking how things were going and I just burst into tears and she said, “What? What’s going on?” I said, “My regime is failing.” And she says, “Oh well, there’s more out there for you.” “We only have a salvage therapy.” And she asked, “What does that mean?” So, I explained it. I will go to the doctor’s office and they will hand me this pill, and I’ll have take it. But I have to wait in the hallway for three hours to see if I actually 16 “HIV in My Day,” Darren Lauscher (October 23, 2017) live, because five to seven percent of people who take this pill will die, because they have a side effect that’s deadly. It’s shitty – I have a disease – it’s killing me – and I have a drug that will potentially kill me too. It’s a mind fuck. How do you go through that? And yes, we have great agencies with support but it’s peer support – it’s lovely but there are so many complicated pieces of this. There are many queers and psychologists who make careers of us – you know, using dark humour here but that’s a reality. There is just so much baggage. JH: Dark humour seems to have lifted the community when they needed it. DL: Oh god, if we didn’t have that, we would have slit our wrists a long time ago, so those who were of that era get it, and when it comes out we have a giggle. Younger generations look at you horrified that you said what you said, but they don’t have a context to understand why it was said, and then you have a moment to educate, and that’s pretty cool too. That’s part of aging as well. It’s a weird double-edged sword. As you age you recognize those epiphanies of life. You go, “Oh, that’s why my parents said that,” as if sex had never happened before until I came along. Or those bigger pieces – university education. How can you possibly know this? I just came out of university and I am full of knowledge and you are old so get out of my way. You couldn’t possibly know, even though you have worked in this industry for thirty years. You know nothing! I knew everything. Those are the moments we get to educate and mentor. JH: Are there good groups for aging positive men? Are there resources in this city? DL: They are scant – they are scant on the ground. I’m working doing some research on this area right now. There is not a lot. There has not been a lot in many years, but it’s a conversation we have been having since the mid-‘90s, and people would be asking, “Why we would ever think about that? We are just happy we are alive today. We are not looking at next week. We are just looking at this week.” Sort of in that picture of funding and programming, and in the reality, what were we doing in those days? We were bringing in legal experts to help you write your will, how to securely wrap up your mortgages so your partner would inherit, setting up funds and trust funds – all of the bits and pieces if you had money or property in that big picture. It wasn’t about, “We need to put you in RSPs and education funds and protect this and do this tax diversion.” It was about the here and now of dying. That long-term – long-term in the early days was somebody diagnosed in the early-‘80s. So, if you were ten years, “Wow, that’s something. Holy crap. When are you dying?” JH: How might people who are considered long-term survivors now feel? Are there mixed feelings about still being here? DL: Yes, there’s that. There’s huge segments – think of it as pie. There are so many wedges within that pie. But as one person says it, “Funny, you’re asking me now about what I need as an old person? You forgot I’ve been here since day one. I founded that organization and you kicked me out halfway through that many years ago because I was in the way. And now you have come back to me? Interesting…” I get that anger, that sense of how dare we in the growth of our organizations push out our founding members because they were in the way of the next wave of people who were infected, in the sense of in the early days it was the gay men – it was predominately how our agencies were founded. Then the next wave of women, and the wave of 17 “HIV in My Day,” Darren Lauscher (October 23, 2017) drug users, the immigrant wave. And so, agencies – and totally understandable – and agencies only have so much capacity and then a funder comes along and says you need to focus here but I am not funding you over there any longer. And those people had programing they could attend and now that’s gone. But I don’t qualify for that programming because I am not that, that, or that. So, there is no space for me in my organization, so I am forced out. Where do I go? Now we are coming full circle back to those founding members to say, “Hey, we have been missing you. Where did you go? We need you because the funders are dangling monies for old people.” Interesting, shocking, despicable - so many things, so many things, and yet, do we throw the baby out with the bath water, and be like, “Screw that. We won’t deal with you people because you’re just nasty old farts who are grumpy.” Or yeah, we need to own that and let’s move on and provide some hot damn service that addresses this population that’s still kicking and have needs that are in many ways beyond our scopes as agencies. How do you deal with housing? How do you deal with comorbidities? Oh, and a chunk of that population has no money because they should have been dead, so there was no savings to draw upon, so what do we do? Provincial disability plans? Sixty-five. JH: Aging in a vibrant gay community of younger people… DL: Is tough. It’s tough, and you think of social circles of your friends, whether they be gay or straight, who are negative, who have – as you did – entered the corporate world as twenty-odd- years-old. And then you have to leave it, because you got sick and they kept climbing the ladder. Their social economic status has changed, it’s shifted upwards. So, you live through your friends vicariously as they travel the world now. You plan and budget for one good meal out with them a year, because you can’t afford to drop one $100 plus on a Friday night for din-dins. You don’t go and attend the $20 theater movie to see the latest blockbuster because you have to figure out, “If I spend that $20 there, what am I not going to have next week to eat?” Those are the realities of living on a disability. JH: Has that become a stigma? DL: Oh god, whether it’s an internalized stigma or an externalized stigma, no matter how you slice or dice it, because they want you to participate but they also want to understand your financial situation, so then they’re no longer communicating invitations to you for you to refuse because they don’t want to put you in that position because they feel bad. And then they also know you have pride, and yes, they can invite you to some things that they can pick up a tab for and its very convoluted. That’s one thing I have noticed as you grow old – if you don’t have a big bucket of money, it’s difficult. Christmas, festivities, let’s go for holiday drinks, at $15 or $20 a glass for whatever we could go to the swanky hotel lounge. Yowza, you can’t do it, you can’t participate. You can participate in other ways. Let’s walk around the neighbourhood looking at X-mas lights and bring a thermos of hot chocolate or coffee or whatever and lace it with scotch. Yes, that’s easier done. But still, if you’re the one picking up the bottle of scotch, you might have had to plan for a couple of months to save the pennies to buy the scotch because you don’t have the $20 to $40 required. Because you gotta think about it - gotta pay the rent, hydro, other bills, food, and momma needs a new pair of shoes. Underwear wears out, socks wear out. It’s nice to be semi-current in the same decade as fashion, but it’s tough. You walk through those fancy stores, and go, “Oof, sticker price shock. No, I am just looking but thank 18 “HIV in My Day,” Darren Lauscher (October 23, 2017) you! I’ll call if I need you.” Trying to stay current. Then you go off to your Walmarts, your Winners, your Value Villages and Sally-Anns and going, “This is kind of what’s in fashion right now. What’s on these racks that I might be able to afford or utilize?” It will keep me semi- current, but I am still participating or at least feel like I am participating in society. Because I am not eccentric enough to pull off a look from the Eighties or Fifties or whatever generation you choose to become representative of. You don’t think about that, but that’s certainly part of my reality. Am I ashamed? No. I said to my brother-in-law’s mom, who has since passed – one day I was at her place gardening for her, and she said, “I don’t understand why you gave up work.” And I said, “I gave up work to live. Work was killing me, the stress of what I was doing.” And she said, “But you could change jobs.” And I said, “Yes, but you know I was thirty-odd at that time.” And I said, “But what do I do? Do I become a barista? That’s minimum wage. I am not making minimum wage. I can’t live on minimum wage. It has to be something that has some dollars behind it, which means re- educating yourself. Where do those dollars come from? Those are not offered at community college for twenty dollars a month, they are offered for thousands of dollars. Where do I get that money and will that decision to do that keep me alive, make it joyful? Will that decision be joyful enough for me, to want to do day-in and day-out, because having joy in your life is part of being healthy. So, when you’re struggling in a job you hate, it’s not so good for your health. There are side effects with that. So, I choose to be poor, I choose to look after my health in the best way I know how.” She said, “Okay.” And then she got sick with cancer and before she died she was talking to some friends and I was part of the conversation and she said, “You know, I understand where Darren’s coming from. It took me many years, but I get it. You’re focused on staying alive and enjoying every day. That’s a lot of work. You can’t do that when you’re doing something you hate, because it will kill you.” So, a profound little lesson in life. JH: Quite a few. Is there… DL: Well there is other pieces. I think that it’s really important that Vancouver stands out. For one, in the early-‘80s – ’82, ’83 – a group of doctors recognized this disease is hitting the world – didn’t understand it or what it was, but realized they should do something in terms of research. One thousand gay men enrolled. Very important. JH: What was that called? DL: I want to say the Vita study. I forget the name of it – I have it at home. My memory is not quite as good. But they immediately started testing and doing massive blood draws every eight weeks, and they started off with a two-sided form questionnaire that became a binder as the years went by. It was a long study, and it was supposed to be anonymous but about a decade in I said to my doctor, “This is really bizarre. You assign me a code and we write it in but when I go over to St Paul’s they don’t. Everything is by my name and attached to my name. And I am freaked out because I have friends that work in the lab and I worry because I have friends who work in the lab who are going to see my name attached to HIV related lab work.” It was in the early days, so it was freaking me out. He said, “While there is confidentiality of healthcare workers, but we are dealing with humans. Humans open their mouths and say the wrong things at the wrong times without realizing.” In those days, lives could be destroyed financially, renting, etc. 19 “HIV in My Day,” Darren Lauscher (October 23, 2017) So, I made a decision to leave that project about fifteen-odd years into it. But the amazing part of it was, I got tested in ’89 and found out September 13th on the telephone which was my way of doing it. My doctor wasn’t happy with that choice, but hell, I could deal with the consequences – at least I thought I could. I said, “Thanks. Fuck,” slammed the phone down, had a few tears, got up, washed my face, and went off to work. At that time, I was in retail managing a men’s store on Robson street and put on my happy retail face for the day. That was quite the rollercoaster. But going back to the study, my HIV specialist was Dr. Julio Montaner. We have had a great relationship over the years – I have driven him crazy, he has driven me crazy, but it has been a great relationship. And the first time I met him was in 2000 and he said, “Oh, Mr. L. I’m sorry, we just – we – it’s really hard to create a drug regime for you because we don’t know when you seroconverted. We don’t think you seroconverted in ’89, we think it was earlier, but we don’t know, and it’s really difficult to figure out what regime to put you on.” Because genotyping was just coming into being. I said to him, “I was part of this crazy study.” And he said, “Oh? Tell me more.” I said, “There was a number of doctors here, it started in ’83, and I always wondered if they saved blood samples or slides so that when they had the tests they could go back and retest.” And he said, “Yes, they did. Let me make a phone call. We will know in two minutes.” And sure enough, the phone range in two minutes and, “Yes, late spring, early summer of ‘85.” Then he looked at me and said, “Stop thinking. Stop thinking about where you were, what you were doing, who you were with.” And I said, “No, I am not thinking about that. I realized very quickly when diagnosed in ‘89 that you can never blame anybody, that if you are going to blame anybody it would be yourself, because you had to own your actions. And I chose to have sex as a human being. Does that make me a bad person? I don’t think so – it makes me a human.” And he laughed and said, “Yes.” Research is a really key piece of Vancouver, and I think as a population we don’t understand that or know that. Because it also shaped ethics, because at that point in time a research project didn’t have to share information out when they learned something, to the participants. When ethics realized after the fact with that project, that created quite a shift in the ethical world about how research is done, who’s participating. When research finds out something they have access to that the patient might not, they need to share that knowledge to give opportunity for new drugs or whatever. So, it changed research and how research was conducted. That’s an amazing piece of work. The other piece was the HIV/AIDS movement changed how hospitals functioned. Hospitals had visiting hours from 10am to 8pm – when you hear the chime please leave. You will be asked to leave, you will be escorted by security if you need to leave. HIV broke those rules. We said, “Screw it.” Our family, our friends, our loved ones were not going to die alone at 3am with no one at their bedside. Many have fought with hospitals, but we changed the rules. We get to die with dignity with somebody holding our hand, if we so choose. Yeah, that type of care, that shift, that’s monumental. I don’t think society as a whole truly understands that, I don’t think. That’s on the people who lived and died of HIV in the healthcare setting. We broke the rules so now you can sit with mom or dad or whoever as they die at 3am and be there with them. JH: Makes me proud. DL: Yup, it’s our gift – it’s our gift to society. We changed and broke hard-fast rules to make society better – to make society better. That’s important. So, yeah… 20 “HIV in My Day,” Darren Lauscher (October 23, 2017) JH: Thank you. DL: What other. I know our time is going along… JH: We have fifteen minutes. DL: …and I am sniffling – excuse me. Sorry, transcriber. As I said earlier, I was a runner in ’89. After diagnosis, I said, “Doc, I want to run a marathon again.” He said, “Okay, you’re healthy, your counts are all normal.” He said, “Go for it.” So, I did a couple more marathons and then went back and said, “Doc, this race director came and talked about this crazy race on the North Shore called the Knee Knacker. I want to do that.” And he said, “Oh, I don’t know about that.” And I asked why, and he goes, “Well, it’s not as if there’s a 7/11 on every corner where you can just phone an ambulance.” I said, “Well yeah, but as a kid I loved cross country.” And he said, “Yeah, but this is a whole new ball of wax. This is…” “But I am already marathoning.” He said, “How about I make some phone calls and I will see you in a week. I gotta talk to the big girls and boys about this. I don’t know what to tell you.” So, a week later I go back and I said, “So, what did they say?” And they said, “Well, first, they don’t know anybody like you that wants to do that, and so the recommendation is no, because their fear is – you have to understand the science of the disease and the disease causes inflammation. So, your body is already in a hyper state of inflation and because you’re not on any drugs, we don’t know what the disease will do. You’re going to elevate an already inflamed system to whole new level that we have no science on, so all of those endorphins could kill you.” And I said, “Oh, okay, Doc. If it kills me, I’ll be doing something that I want to be doing. It would suck for my friends that I’m with because, all of a sudden, I will be yacking away and keel over dead maybe off the cliff side, but I will be doing something I enjoy as opposed to sitting on my couch waiting to die. I’ll have a story for my funeral. Instead of, oh, he withered away and died on his couch. Or, he was on the mountain side careening down it, and dropped dead, but he knew that and was doing something he enjoyed. I think I will go with that one.” So, fast forward to meeting Dr. M in 2000. He said, “You’re that patient – you’re that crazy person, you’re that ultra-marathon runner. We’re following you. We don’t know how the hell you’re still alive because you have broken all the rules about how this disease works within the human body. And what you’re doing to it when you’re running on those mountains – you’re in the medical books.” And I said, “Wow, does this mean you’re going to come to my races and take blood samples?” And he goes, “No, because there is only you. Actually, there is now three of you that we know about. You’re not a big enough cohort for us to research on, but we are following you, because we don’t understand.” And so, being a teaching hospital where his office is, we have Doctors coming from around the world, and I have always been introduced as, “This is that crazy patient who runs, who’s breaking the rules.” And they look at you and go, “Wow. What races have you done? What type of mileage are you doing?” So, this past month, Germany released some research around some ultra runners and they proved that it doesn’t affect the body in any significant way that they can tell after following them for a decade or however long it was. I was thinking, “Oh hell, we knew this back in the ‘90s.” So, when I see Dr. M next, I will have to take the clipping and say, “See we could have done this!” JH: That’s a great story. 21 “HIV in My Day,” Darren Lauscher (October 23, 2017) DL: Sometimes you just break the rules. You do what you do to stay alive and be happy, and give back when you can. JH: That has been your journey. DL: That has been my journey. I do a crap load of volunteering. I think it’s important to move – to mentor the next generations, to walk in the halls of government – to remind them of their duties that we are still here, we are still living, we are not all dead, that you can’t ignore us, that when you choose to put healthcare dollars over there and ignore populations, ramifications happen. Saskatchewan is a good example and their horror story that they are living right now with an epidemic that makes the third world look first world. It’s important that we keep rattling those cages and getting the message out that there is change, and there is good change. “U=U” [Undetectable = Untransmittable] is good change. So yeah. JH: Thank you. Thanks so much. DL: You’re welcome. That was good.