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SE2EP6_Surviving and Thriving: Let's Talk_05-27-2021

Positive Effect47min

James Watson

00:00

Today, you will hear the views and ideas of our pozcast guests. We are eager to showcase their expertise and provide a platform for their views, but they may not always reflect or align with the views of The Positive Effect, or the MAP Center for Urban Health Solutions. Welcome to the pozcast. We are created by and for people living with HIV. On each episode, we explore what it means to be poz. We challenge the status quo and we share stories that matter to us. I'm James Watson and I'm HIV-positive. If you're living with HIV, listen up.

Adrian Betts

00:37

People will often look at their lives and go, Oh, I've been positive, almost as long as I've been negative. And you can say that I've been positive since day one.

Ashley Murphy

00:45

Yeah.

Adrian Betts

00:45

I never had a choice in this issue. I arrived in the world living with it. And you are a long-term survivor and a long term thriver. And you are a role model and you are the bomb.

James Watson

00:58

We have a great show for you. This is pozcast.

James Watson

01:09

Each year, June 5, is set aside to celebrate long-term survivors of HIV and they're heroes to me, I can't put it any other way. And on today's pozcast, we're going to hear about their unique journeys, their challenges, triumphs and lessons learned along the way. And I'm going to do something a little bit different for this episode. I'll introduce and wrap up the show, but I'm not going to take the mic on this one. Instead, I'm going to sit back and listen along with you to a conversation between generations of thriving long-term survivors. They have vastly different journeys and experiences, but lots of similarities. And I want to know more. Adrian Betts, the Executive Director of the AIDS Committee of Durham Region, is in his 50s and has been working in the HIV sector in Ontario since 1989. And Ashley Murphy is an actor and has been an outspoken advocate for HIV and AIDS since the age of 10. At 23 years old, Ashley has been living with HIV since birth. Both long term survivors and both inspirational leaders. Let's listen in.

Adrian Betts

02:15

Hey, Ash, how are you?

Ashley Murphy

02:17

Hey, I am doing pretty well this Monday morning. How are you?

Adrian Betts

02:21

I'm great. This is an exciting opportunity—I'm really looking forward to today.

Ashley Murphy

02:25

It is I feel like we haven't really gotten the chance to because of COVID and everything just sit down and chat even though you know, we're kind of far away. We're still sitting down—we're chatting, we have our coffee.

Adrian Betts

02:36

We do. I'm happy about that. So in James's preamble, he referenced us as heroes, do you think of yourself as a hero?

Ashley Murphy

02:44

I mean, I've kind of struggled with that for a very long time, I want to say, because the first time someone ever called me their hero, and I put that in quotations just because I'm like, that's a big word. That's a really big word. I don't know if I have the shoes to fill it. But the first time someone told me that I was 12, I think, 11 or 12, and I just stopped speaking, I'd gone off on stage, someone came up to me and hugged me, and they're like, Ashley, you are my hero. I was like, what does that mean? What does it mean to be someone's hero, you know what I mean? Because I had just been talking about people who inspired me, like, you know, like my mom, or Martin Luther King, or Gandhi, or all these people I grew up learning about amd loving. I don't think I'd consider myself a hero when I when I think of those kinds of people and what they did—I'm like, I don't even come close. But what about you? What—how do you feel?

Adrian Betts

03:33

It's similar for me. The word hero makes me actually a little uncomfortable. I mean, the fact that I'm still alive doesn't make me a hero. I like to think that I do good in people's lives, but I don't do it for applause or for or for recognition. It's just part of what I do. And I'm glad to be alive. Like I'm so glad to be alive because I was not supposed to be I was supposed to die 10 years ago, and this, I still think it makes me a hero, which is interesting. I appreciate what James was saying in that, acknowledging the fact that people who are long term survivors, you know, we have a story to tell them we have value and we have a narrative that's unique to us in that we've been living so long with HIV. We lived through the dark ages when you know, everyone thought it was an absolute death sentence, and we were social pariahs and today, where it's, you know, a chronic medical condition where you know, things like you exist or not. And so, yeah, I get how our journey can be inspirational, but I never think of myself as a hero. But, you know, it is what it is.

Ashley Murphy

04:41

Yeah, I mean, I guess it kind of comes with being able to speak out and being outspoken about it. Just because there—when you think about it, like there are people who are outspoken, but there are also a lot of people who aren't and can't because of the stigma that they face. And I'd say we're very lucky.

Adrian Betts

04:57

Yeah, I certainly have a big mouth. I've always got mouth open yapping about something. So speaking of this journey, what's it been like? I mean, for me being diagnosed in the early days of the of the pandemic, when it was all about fear and angst and anxiety, where we really were treated differently. I mean, that was not uncommon for me to go to four funerals a week or more. People, my friends, were just dropping left, right and center. It was horrible. And the whole time, people sort of, they blamed us, like, it was our fault that we had done something wrong to deserve our HIV. And it was a time of incredible fear and anxiety. And I'm so happy that I've lived beyond that part of it. But I think that partly made me who I am. I mean, I was an actor, like you, before HIV. And the fact that I'm not shy is what got me into AIDS work. We needed money. And so I said, Well, I'll ask and so I became a fundraiser—just literally asking anybody for money to help support people living with HIV. And back then, I mean, there weren't job descriptions, you weren't like a fundraiser or the executive director or the counsellor, you did all of those things. Everyone did everything all the time. It was a real different time of coming together for community. And I think, without the queer community and hemophiliacs and Haitians—the four H club, right, we were called homos, Haitians, and hemos—coming together to really sort of create the infrastructure that became the AIDS movement. I think, you know, a lot would be different. But your experience is radically different than mine. I mean, you were a baby.

Ashley Murphy

06:38

I mean, I can't even imagine like growing up, obviously, I was aware of, you know, the 80s pandemic epidemic, and all that stuff that happened. And growing up as a kid with HIV, it truly scared me. But it also made me realize at a young age, how thankful I was. It's kind of weird to say thankful that it happened, but at the same time, it's kind of weird, because I wasn't there—at all. The only thing I know is things that I've seen in either like documentaries, history books, textbooks, like stuff like that, because I was born at the end of the 90s in 1998, at a time where the first antiretroviral had become accessible in Canada in 1996. I'm very lucky to have been born at the time I was because although there wasn't a lot of access to medication, there's still some that when the doctors did find out that I had HIV, you know, they were able to give me medication, right from the get go. And so I was always ensured, knowing that I was always gonna have medication. Even as a baby. I obviously didn't know how important that was, but then I obviously learned growing up like how important these medications really are.

Adrian Betts

07:43

Yes. So I tell you over the years, there have been some rotten ones.

Unknown Speaker

07:47

I'd like to hear about some of your journeys, like what what have been some of the medications that have been just god awful because we all have those.

Adrian Betts

07:55

Yeah, Kaletra would be the one that did me in the most. It was a bright orange capsule that literally, was basically, all it did was give you diarrhea, like explosive, nasty, horrible diarrhea. And I was, at this point where I was taking Kaletra, I was living in Port Perry, working in Hamilton at the AIDS network there. And the drive was more than two hours on the 407 and so I knew where every single toilet was, which between my house and my office, I literally I had to pull over on the side of the road a couple of times, it was mortifyingly embarrassing, but it was just one of the side effects. And then other things, of course, you know, some meds, even today, some of the meds I take, I can't eat first thing in the morning. If I do, then I'll want to puke or feel nauseous. And because I live with HIV for a long time, and I didn't go on meds immediately because I was resistant to it because most of my friends who went on meds had died. So I resisted going on meds as long as I could. And so I have a bunch of comorbidities, so I take other meds for that, too. So back in the early days, you were taking 16 pills a day, four times a day for HIV. But now here I am 54 and I'm taking 16 pills a day, four times a day, for HIV, and for diabetes, and for HAS and for all the different comorbidities I'm living with. There are parallels between that and now for me about medications. Ultimately, I'm grateful. I mean, they all saved my life. And I'm aware of that. I'm aware that I waited too long to go on meds and that's why I have so many comorbidities that I have today. Because I just didn't trust the meds soon enough, which is kind of fascinating in hindsight because now I spend all my time connecting other people to meds to making sure they're in the care system and that they're getting treatment. So it's kind of funny. What was your worst meds? Do you remember any?

Ashley Murphy

09:46

I mean, there's definitely stories that my mom told me about Ritonavir. I took it when I was a baby and it was given to me in a bottle. And my mom was telling me that every time I drank it, tears would just be running down my face. When she says hot she said like, one time she tried like a little like dab of it, she was just like, because she saw me crying. She was like, Why she crying? Like why is it that bad. And then she like dabbed a finger, she tasted it and she said it tasted like kerosene. I mean, I don't remember this medication at all. But maybe that's why I don't like really hot food now. I'm really just any time anything spicy touches the tip of my tongue, I'm outie, like I cannot do it. But I'd say the hardest medication I've been on—I don't even remember what it was called at this point—but when I was little, when I was five I want to say, I only weighed 23 pounds. I've always been so small, so underweight, but especially as a child. And I couldn't swallow my pills orally, like I didn't have it in me, I just couldn't. They were disgusting. I had a hard time, you know, and I was a child, most children don't know how to take medication anyway, I just had to learn the hard way. And so at five, the doctors gave me what was called like a gastric tube, and so every single night before I went to bed, my medicine was spread through this tube. But also throughout the day, I'd get nourishments, like Ensures and stuff like that, also put down there in order to you know, build me up, you know, get some get some meat on my bones. And so I had that g tube from ages five to nine. And when I say like, I would say my pain tolerance is quite low. And that's probably the reason why like every single month with this tube, it had to be changed every month, or else it might explode. And then that would cause me even more. Yeah, there's like a little balloon inside...And so every single month, I had to get it removed, and a new one put back in. But the thing was living in Ajax and being so far from Toronto, we couldn't just make that trip all the time. But we're already going so much for doctor's appointments and everything, it just would have been more. So every single month—I know this is going to sound kind of gross: a little warning—but my mom, she would lay me out on the on the counter and she would remove the tube with her hands and a towel. And this was like right before school, too. So like she's like packing lunches, doing all that stuff. And like beforehand, like before you leave to go to like kindergarten, Ashley, let me fix your tube. But when I say like this is probably the worst pain I've ever experienced—because she would just take she would just take it out. I mean, obviously there's no other way to do it. But I was always swarming—it was very painful. And as soon as I actually got it taken out—we got taken out the doctors, and it was like a three, two, one, out. And then I looked at my mom and I was like we could have done this for five years. I was like I didn't have to—I was kicking and screaming on the counter for minutes on end because of that. But I'd say like, that's probably the worst, like the worst thing that's happened, just because of the pain. The pain was really bad. But I mean, as soon as I got that to about I've been able to take medication perfectly.

Adrian Betts

12:58

Wow. I gotta say this is a competition you were in that was that's a crazy story. And to be that young and to have that—such an invasive form of medication. I mean...wow.

Ashley Murphy

13:08

I always hated it. Sometimes it was either like my older sibling, like my older brother or my older sister, they'd hold my hand because I was like screaming. But they'd have to, like look away, too. They're like, Oh, you're okay, Ashley, you know, but like, they didn't actually want to look at like my stomach or anything, just because it was weird. I mean, I understand. I feel like I would have been the same in their shoes.

Adrian Betts

13:29

So when did you understand that you knew you were positive what that meant? Or like, I mean, you had all these things happening and you were five, I mean, did you know you had HIV at five?

Ashley Murphy

13:40

I mean, I think no. Which is funny, because I didn't even realize why this was really going on. I just kind of knew that I had medications to take and that I'd go to doctor's appointments every couple of months. And I thought that was normal. I thought that you know, every single kid in my class went to the doctor's every couple of months. But also going to the doctor was a luxury for me because I got to miss school. So I didn't really honestly I didn't really mind as a kid. So I didn't really think about it. I just knew that like, Okay, I'm going to go to the doctors and getting my blood taken. I'm going to talk to some doctors and then I'm going to go get Burger King.

Adrian Betts

14:14

Sweet.

Ashley Murphy

14:15

Yeah, I mean as a kid, that's all that's all you really look forward to, right? Go into Sick Kids was such a journey for me driving downtown was fun.

Adrian Betts

14:23

Cool. So but when when did you understand your diagnosis? How old were you?

Ashley Murphy

14:28

I was seven. That's when my parents sat me down. They're like, you know, the reason why you go to all these doctor's appointments. The reason why I take all these medications is because we have a virus called HIV. And again, being so little, being seven, not understanding what HIV is at all. I just brushed it off. I was like, okay, what's for dinner mom? It just completely went over my head. And I mean, I was short so it's easy for that to happen. I didn't realize but then that led to me asking a lot of questions. I became very inquisitive very quickly, you know, a plus b like what's, what's the outcome? Like, what happens? And not really knowing too much, which is, that's why I asked because I didn't know anything.

Adrian Betts

15:15

You have to understand, for someone like me, that's a real trip just to imagine. And I was working in HIV, and then seroconverted while working in HIV. So I knew everything. I knew how to protect myself, I knew how to manage the disease, and what the right things to do were. But still, when I was diagnosed, my partner at the time was really, really sick. And the docs didn't know what was wrong. And it was pretty clear to me that, you know, he had very clear indications that he might be HIV positive. And so we did the tests. And we found that our status, and it was it was sort of the whole bottom of my stomach dropped out. I think anyone who's had that diagnosis back then knows that feelings like oh, my God, how much time do I have? And so, the idea of of tackling that at such a young age, even though you say, you don't really understand the idea of being faced with that impactful statement that you have this disease, it's tough to imagine. I think I understand now, maybe people call you a hero, and that you've sort of just got off—got on with your life. As you know, this is just another part of me...

Ashley Murphy

16:26

Yeah, I really don't know, like, a lot of people have asked me where that comes from. I don't even know if it really came from me so much my parents, because they always—I grew up with a family, you know, you've met a bunch of my siblings—second youngest of 10 kids—I was exposed to a lot as a kid. But I was exposed to a lot of different atmospheres and environments, like all of my siblings have either some sort of physical or mental disability, that, you know, prohibits them from living like a completely 100% prosperous life. Like my brother's in a wheelchair and will always be in a wheelchair, but despite that, he is one of the funniest guys I've ever met. Like my brother, Patrick, I always like to say to people—and they are so surprised when I say that they're like, how can he be that funny. Like, because like the doctors, you know, when he was first born, too, was the same thing, like, didn't have very much to live, didn't think he was going to have a prosperous life. But here he is. And I feel like I—because I was one of the youngest in my family for a very long time, I grew up with my siblings, and seeing them kind of overcome their battles, which are completely different from mine, mind you, but still kind of like seeing that and seeing like, where they get their strength from. I don't know if that was something inherent within me. But just seeing my siblings kind of, you know, going through their own struggles and coming out on the other side, it definitely was empowering to kind of be like, you know, maybe it wouldn't be so difficult to speak. But it wasn't something that ever just kind of like, oh, maybe one day I'd love to speak a talk. But, you know, like you said, you got your start out in acting, and I from the age of four, I want to be an actress. So maybe it was that innate need to want to be able to, like you said, like you were really good with speaking to people. I didn't realize that at a young age until I started speaking on a panel and I was speaking with a whole bunch of other youth. And then people would come up to me and they'd say, you did an amazing job. And at 10 years old, that doesn't really mean too much, because I'm like, really, like all I was doing was sharing my story. And that's it. Like it goes back to that hero thing that we're talking about.

Adrian Betts

18:29

But that's just it, sharing your story is one of the most empowering things you can do as a person with HIV. Because it's not just sharing your story, it's owning your truth and coming out publicly as someone living with HIV, where you're no longer in control of that of that knowledge. Like, it's out there on the internet, or it's out there in a newspaper or wherever, right? It requires a degree of bravery and a degree of trust in yourself that you know, whatever happens, you can handle it. I mean, I think what you said about about your siblings and how it basically is like everyone has a challenge in life, and this is mine. And I love that that point blank point of view. I'm one of eight in an Irish family. My family it's a, you know, eat fast or you don't get seconds. Like there's no, there's no Molly God. Yeah. And so I think it's, it's, it's the similar thing, in that I just get on with it. Right. Get on with it. So you, you mentioned that you started speaking at age four. Tell us a little bit about the expertise. You've been an international spokesperson at this point around HIV issues, right?

Ashley Murphy

19:32

Well, I said that, like at age four, I wanted to definitely pursue something in the arts. I knew that I wanted to be in front of people no matter like what that look like. But at four years old, I didn't think that in six years I'd be on stage speaking to people. Like I did not think that was going to be the route I was going. It really just started happening and I again, like I just gained all my strength. I don't know if it like it was from the inside because I don't remember doing a lot of internal reflection as a kid. But again, you're a kid, you don't really think about it. It was mostly from the kids that I had grown up with, not only my siblings, but the year I found out I was HIV positive, I started going to a camp for kids with—who are either infected or affected by HIV. And so I went to this camp from ages seven to 15. And at this camp, you learned that in being HIV positive was—it was normal there. You know what, it wasn't a secret. I mean, obviously, there were some people who didn't want to share and didn't say anything. But it really just takes that—and I feel like you've seen this at different conferences we've been at, it really just takes one conversation, one person to start speaking and then the ball rolls. Because there was just so many times when we just like, talked about being kids, but then there were times and you know, we had a small conversation about medicine, or like one person would, and it would just kind of trickle and then we'd share stories. And then that's when I realized the importance and the power in like sharing your story.

Adrian Betts

20:56

It's cool. I gotta ask you, when you're in a room full of only HIV positive people, how does that make you feel? Because for me, when I'm in a room full of PHAs I know that everybody in that room understands me. And they understand some of that weird stuff that we go through as people living with HIV, some of the stigma, the stuff around disclosure, the stuff around anxiety, around health issues, around dealing with nasty medications—all those different things. And so when I'm with a roomful of PHAs, it's a place where I truly feel I can just relax.

Ashley Murphy

21:29

I feel at home, I feel at home. Yeah. Which like, kind of sounds weird, but again, from a very young age, as soon as I found out, I was basically exposed to this whole world. And I learned about a lot of different people, a lot of different stories and where they came from. And I just met a lot of people who, you know, when it came down to it, they were too scared to really talk about it on a grand level. Because the thing was, when I when I started speaking, I only started speaking, because the older kids in the clinic did. And I tagged along, it's kind of like they're, they're like younger sister, I was always one of the younger ones. And so I was just like, you know, doing what the big kids that I don't really, like see it as much. But then as the year started to progress, and the doctors want us to kind of like seek more and at different things, not just you know, in front of doctors and nurses, they wanted like, Hey, can we get your photo? Can we get your name? Can we get like this and that? Not like they just kept like the request just kept coming in. And kids just like prospectively declined, because you know, like, I can share my story, but just don't put my name out there, anywhere. And it's because of the stigma, it's because of the fear that it's going to get back to them, and that they have to live in fear for who they are. But for me, I just always was like, yeah, you can put my name, you can put my face, you can do anything. Like I just didn't care. And I don't know why I just didn't care, I just didn't. I was okay with my truth, I guess. Even at a really young age, just because I, again, I just wanted to speak, I just wanted to be in front of people. And it really just happened that way. Because I mean, at that time I was—at 11 years old—because I still keep in touch with my birth family. I was performing in bars with my birth father, singing like Beatles tunes. But when I wasn't doing that I was, you know, talking and giving conference, like speeches and conferences and stuff. So it's very, it was two different worlds, but still trying to remain a kid all at once, which was like, very different from your experience, because you found out as an adult. How was that?

Adrian Betts

23:26

Like I said, I've been working in HIV, so I had more knowledge than most people. So it wasn't as jarring as that. What was hard was then telling people, disclosure is always tricky. But when you're first diagnosed—when I was first diagnosed, the idea of having to tell our families was just awful, because the single biggest anxiety for us as young gay menat that time, was that we might be at risk for HIV. So letting them know that Yeah, you know, we got it, it was a double whammy, because it's not just outing yourself, it's now shoving them back into a closet. They have to now deal with their feelings and anxiety and stress. You know, you're gonna have to put on this sort of coat of armor to protect yourself because you're going to need to support them, and walk them through that whole thing about understanding how the virus works and how treatment works and how you're gonna live your life and so forth. So it was a very sort of surreal experience. For the longest time I didn't deal with my diagnosis because my partner was sick. And then coming out to our families. That was awful. I told my sister first—I always told my eldest sister Caroline everything first. I came out to her first. I told her about my HIV status; she's the first one who knew. And I don't know why burden her with my crap, but I do. But she's, I think she's like the test subject. She's the person who always stood up for me as a kid. She used to stand up to the kids who tried to beat me up at school. She'd be the one that like, Keep away from my kid brother or I'll kick your ass. And so I think I go to her as a place of safety. And so testing that with Caroline first and then telling my family was just—it's hard, it was really, really hard. Because there was a sense of disappointment, like I done something, I disappointed them or let them down or now I had caused them to worry about me because of something I done. But then I was realizing that it took me a little while to actually finally process my own feelings about being diagnosed—about what that meant for me. And ironically, it gave me agency, I was like, do not get stuck in this place of grief and worry. It's a fact, it's happened, get on with your life, and you have stuff to do and don't let this beat you. And I haven't—I mean, ultimately, still here still kicking, right. And I've had a good life, a fun life. But lots of crazy things. I've traveled the world, I've raised horses for a while, I did things that I was told I wouldn't be able to do. And well, not every day has been great. I've been sick several times with some pretty serious issues. I had an embolism, that was horrible. But you know, the trade off has been worth it. I often think now, who would I be if I wasn't HIV positive? Would I still be an actor? I don't know. Would I know who I am or would I have the same confidence I have today? Because it's been really clear to me that—I might get a bit weird on you, I apologize—but I'm a person of a degree of faith in that I identify as a Quaker and I believe that that living your best life is by through serving others, right. And so, my diagnosis gave me a clear path into how to serve other people and how to help other people. And so that's been a big part of why I do what I do. And I have a big mouth, like I said, and have no—I'm not shy and have don't have stage fright, so I just get up there and just wing it. And so I became a very vocal proponent. You know, it was funny, I've been arrested a couple times for AIDS demonstrations, and yeah, it's it's been a wacky, wacky time. But it was it was definitely an adjustment learning my status and then coming to terms with it, and then embracing it. So that's it. So I want to ask, before we get too lost in this conversation, I want to ask you the big question.

Ashley Murphy

27:14

Yes.

Adrian Betts

27:15

Dating, I want to talk about dating.

Ashley Murphy

27:18

Dating is a big question. I honestly, I found that in a lot of cases, the most open people about their status are the most like, weary in the relationship life. And I mean, I don't know if that's my own personal experience. People could see me as the most like, outspoken, you know, confident person, which like, I can be, we all can be that. But at the same time, as soon as it comes to telling a boy, forget about it. I shrivel up, and I turn into a very like insecure little girl, which I don't know, I guess like, you know, that's just something I have to work on. I mean, it used to be worse in high school, it definitely used to be worse. Like, there are definitely some times when like, I'd want to disclose to someone and then I'd just run off. I'd be like, Oh my boss is here. And I would do stuff like that. And honestly thinking back to it, like my 14-year-old self, I can't even imagine doing stuff like that now. Because anyone, anytime anyone asks me, I'm just like, Yeah, and? Like, I really don't care. It could be in person. It could be through text. Even if I don't like the outcome, or if I don't think I'm going to like the outcome, I'm going to say it anyway. Because what's the point in lying to them? Because the one time that I did lie to someone, I lied about my status in grade nine. Because there was one time I was—it was after drama practice, obviously, I was just hanging out with some of my friends, and then this one girl from our drama cohort, she comes up to me and she randomly—in front of people—just goes, do you have HIV? And I still don't know why, to this day, she just randomly came out and asked it, but I guess she was curious. And I said no. And then after that, I walked away and I cried. I felt really like beaten down that day. And I was like, I can't believe I did that. And then I went home that day and I told my mom that I had like told someone that I wasn't HIV positive, even though obviously, that's bullshit. She talked to me and she was like, tomorrow or sometime in the next week, you're going to go up to that girl, you're going to talk to her and you're going to tell her the truth. And I did. And it was as simple as that. I mean, it was really hard. And I'm glad that my mom pushed me to do that. Because had I not I don't think I would have been able to like kind of overcome that. But in doing that, you know, she she apologized to me and we had a good rapport from the rest of high school. So, you know, nothing bad came from it, but it was the initial you know, being worried. You know, either even like telling friends, telling people you're interested, it's definitely hard and it comes with a lot of weight. But I mean, like you said, it's just you as long as you're comfortable in yourself.

Adrian Betts

29:57

I got news for you, at 54 it doesn't get any easier.

Ashley Murphy

30:00

I bet it doesn't.

Adrian Betts

30:02

Like you, I'm comfortable in my skin and I will tell anyone I'm poz. It's challenging when you meet someone and you think, I like you. And then you have to do that dance, you have to navigate, Do they know my status already? If they don't, when do I tell them? Do I tell them on the first date? Before we go on a date? Do I tell them, you know, after when we're about to get intimate? Like when's the right time? And so for me, I'm a chickenshit. And so what I do is I, I generally put it out there and my public profile. So if I'm on a dating app, it says, you know, plus sign after my name. You know, what does a plus mean? It means I'm HIV positive. My Facebook page, you can tell I'm positive and my Instagram, you know, I work at the AIDS Committee and I mention being positive. And so if you connect with me through any sort of platform, you know. The problem is when it's real life, when you meet someone at a party, or on the street or at a bar, anywhere, and then it's like, I like that guy, or he likes me and I have to have the conversation. And the worst part is, is that even though I'm a confident, arrogant, you know, sure-of-myself guy, that rejection still hurts, right? Sometimes when someone looks at you and goes, You know, I get it, I understand, but I'm just not ready to or not able to, or whatever. And you're like, well, your loss, because the irony, of course, today is that when it comes to sexual partners that we cannot pass the virus along, if we're undetectable. It cracks me up that people would rather have sex with people who don't know their status than people who do and are undetectable. I think that's wack.

Ashley Murphy

31:36

Because if anything, it's safer, right? It's like we know what's going on, we're in control of what's going on.

Adrian Betts

31:42

Yeah, exactly. And before U=U, I used to serosort, which means I would only date people who are positive, just to make it easier. That way wouldn't have to deal with rejection either. So I had lots of different tools over the years to try and navigate...

Ashley Murphy

31:52

See that's a very interesting like point that you put out there because I, for me, I also was in that for a little bit. Like as a as a teenager, I thought it would just be easier to date people who were HIV positive. But then I realized I don't want to date in the community, on a date outside of the community. You know, I have my HIV, I have all that, but I have like, I don't want to say like some normalcy, but something that's not HIV related. And I mean, the way, my now boyfriend found out, he found out through a joke, because I was making a joke. And he thought that, you know, you're just making a joke. I don't even remember what the joke was at this point. But it was just a bunch of us, this was pre COVID. I set it in front of like, 15 other people, because they all knew all of them knew. But my boyfriend at the time, that was the first day we'd ever met. And this was out of McDonald's, just out of McDonald's. And I just, like set something out loud. And then you know, people heard it, whatever. Some some people laugh, some people go, like, that's weird, whatever. But it was really just such a weird place. But he was so open about the idea. And he researched a lot about HIV and AIDS. Like he obviously he asked me questions, but he did a lot of research on his own time, which education in a man, that's hot, especially if you know, it's in relation to you, you know what I mean? And then it shows that they care.

Adrian Betts

33:09

Yeah, my last boyfriend was negative and we dated for about a year and a half. And he took it upon himself to educate himself, find out about PrEP, and find out about U=U and all that stuff. And I thought, this was the first time where I wasn't the one helping someone along the journey, they were helping themselves. And I was impressed by that. And grateful for that. Because it was like, okay, so you're looking after yourself, that's cool.

Ashley Murphy

33:33

No, exactly. It's so great to see people that like, they're taking this information, and they're taking into account but they're also they're using this because not only is it going to like help us, but it's going to help them. And it just makes it better in any circumstance. Because like, I feel like you might find this, it's like you don't always want to do the educating.

Adrian Betts

33:50

No. God, I get paid to do that. Every day.

Ashley Murphy

33:56

Same thing with me, I get I get paid to speak. But it's like I'm not you know, I'm not gonna sit here and talk to my boyfriend and learn—like teach him about all this stuff. When he had questions and everything, I answered. But also at the same time, I was like, the internet is a very great place.

Adrian Betts

34:12

Sometimes it's a little crazy, though.

Ashley Murphy

34:14

A little bit, but I mean, especially if there are specific, like niche questions that people have, I'd say like, either you talk to a doctor or talk to someone with HIV. Because I feel like if we try and go out to the interwebs to look for those like really like specific things, you're just gonna get false information.

Adrian Betts

34:33

Agreed. So this is a difficult question. If you don't want to answer it, then don't. I wonder if you could share a low experience. I would go first so you know what I'm talking about. I'm an activist. I am an executive director of an AIDS organization and I have a goddamn medal from the Queen of England, which is lovely. However, I had an issue— health issue—and I was sent to see a specialist and I went to this man's place that I was told to strip naked and put all of his paper gowns, which I did. And then the doctor came in wearing double mask, double gloves—completely head to toe cover with a visor over his face. And he stood on the other side of the room and then got one of those big long wooden q tip things, and poke me from about three feet away, and then said, I'm sorry, I can't help you, we don't we don't, I don't work with people like you. And in that moment, I wasn't an activist, I wasn't executive director, I wasn't...I was just this naked, scared guy with a health issue, who felt completely awful. They made me feel less than nothing. It was the probably the lowest I'd felt in a long, long time about anything about my HIV. And it wasn't until I was getting dressed, where I found my agency or I started getting mad. By the time I was fully dressed, I was in that waiting room I started screaming and yelling at the doctor and yelling at the receptionist, and they had to call security to throw me out. It was terrible. But I found my agency. But in that moment, in that moment, he took me from who I was and just crushed me. It didn't last long. It happened. Has anything similar to that ever happened to you? Where you've been going along your life, everything's fine, but then someone does something around your HIV that reduces you momentarily, or at all?

Ashley Murphy

36:23

Well, I'm thankful that some of these experiences—that they haven't happened in person. I can't even imagine. Like, your bravery in that situation, being able to stand up against that, because that—I can't stand the people that just make you feel so less than human, for being exactly who you are. And I mean, I have gotten that, but a lot of that's online. Because I guess I definitely grew up in the generation where now technology is more prevalent. For anyone that doesn't know already, HIV is plastered all over my bios, everywhere. And you could easily look me up and it said, like, it would be like Ashley Murphy, HIV activist. And I just don't shy away from it. But there have been times when people have kinda like, tried to use it to bring me down. Like, when I was, I'd say I was about 15 or 16, I was doing this radio interview. I was in Vancouver at the time, but these this person was stationed in America. And you know, we're just having a good chat, a very open dialogue about HIV, everything was going very well. But then after, as soon as I got off the radio show, I was like looking at my phone just to see you know, that anyone live Tweet, was anyone talking about it. And then I just opened my phone to see, you know, a couple nice comments, met with a couple of nasty ones. And I was looking at these people's profiles who were sending hate, and I just remember seeing like this one mom with her children. And I remember feeling so upset, obviously, like for myself for a second, because, you know, obviously it hurt, but I was like this, this woman is spewing absolute garbage and hate to me while she is raising three young kids. And I was just thinking, I pray to God that these kids don't grow up and learn these values, and treat people like their mom did. And that was the first thing that came across my mind. But then the other person who was messaging me was saying rude things not only about me, but my birth mother. And my birth mother, she passed away when I was 12. And so I definitely took more offense to that just because, you know, like, my mom didn't pass away from HIV. But also HIV wasn't something that defined either her or I. And they just said, you know, the reason like, because your mom had HIV, she was a disgusting human, and you're disgusting. And you don't deserve good things in life and all this stuff, just horrible things. And I was just sitting in my hotel room in Vancouver, like crying to my mom about this. But at the same time, I was like, why am I letting this bother me? Because at the end of the day, these were like, older people who should have educated themselves. But they're using this opportunity to take time out of their day to write something to a 15-16 year old who they don't even know. How pathetic is that? And then I was just like, why am I upset over this? I'm like, I really shouldn't be I was like what they said about my mom, that wasn't cool. That wasn't cool at all. But I was just like, you know what, I'm just gonna, like, use this negativity and speak and make those people feel sorry. Even though they weren't gonna see me speak because they're in the States and I was in Canada. But it was just like the feeling of the power that I had over them in that moment. It went from a moment of like, being really shattered to empowering. I was able to flip that switch really quickly, which I know a lot of people can't. But I have always tried, as hard as it is to find the positive in all the negativity.

Adrian Betts

39:41

Yeah. So then what's the best thing that HIV has done for your life? Because I wouldn't have my career without HIV.

Ashley Murphy

39:48

And I mean, yeah, I wouldn't have so much without my HIV status. And that's, that's the crazy thing. The first time someone ever asked me that question, you know, like, I'm sure you've been asked, too. If you could go back in time and not have your HIV status, would you?

Adrian Betts

40:02

No.

Ashley Murphy

40:02

No. And people think it's so weird that I can just so easily just be like, no. And I've said no, since I was a little kid. And the reason why is just like, I don't think I would have been, you know, as understanding of a person, as empathetic. Like I said, that growing up in the family that I did, I learned from a young age, you know, people have their issues, but also it's their differences is what makes them unique. And you shouldn't feel bad about any of that kind of stuff. And so like, I just kind of didn't, but I'd say the best thing, probably my family.

Adrian Betts

40:35

I would say the same thing, but not just my biological family, my chosen family. HIV gave me a whole second family of people I work with and play with, who I adore, and you're one of those people. I adore you.

Ashley Murphy

40:51

The feeling is mutual, don't worry.

Adrian Betts

40:53

Thanks. I can't imagine my life without people like you in it. You know, I my whole life has been enriched by the by the relationships I've made. Through my work in HIV.

Ashley Murphy

41:04

We've now known each other for like, 12 years, I think?

Adrian Betts

41:07

12 years.

Ashley Murphy

41:07

That's crazy when you think about it. I was just doing the math in my head. And I was like, Wow, it really has been a long time since we've both been doing it. But it's such like different spectrums, and just different stages. Because there was for so long—when I was younger, when I first heard about this long term survivor thing, though, the way I saw it was that I wasn't a part of that group. Or that people that people didn't see me as part of that group either. But then when I realized that, you know, people didn't really like, see the worth and young people who were speaking. It did kind of piss me off, because I was like, I am a long term survivor. But 15-16 years, like, that's a long time. But it doesn't seem like a long time, when you first think about it. Because like, you look at a 15 year old, you're like, oh, they're so young. You know what I mean? But it's like, when you think about someone living with HIV for 15 years, you're like, That's such a long time. And then you compare the two and you're like, Wait a second, you know what I mean? But you know, however you slice it, 15 years, 20 years, 25. That's a long time.

Adrian Betts

41:08

And add to that the fact that people will often look at their lives and go, Oh, I've been positive almost as long as I've been negative. And you can't really say that you said I've been positive since day one.

Ashley Murphy

42:15

Yeah.

Adrian Betts

42:16

I never had a choice in this issue. I was—I arrived in the world living with HIV. And you are a long term survivor, and a long term thriver. And you're a role model. And you are the bomb.

Ashley Murphy

42:27

We both are, I actually want to ask you a question. Because I had someone ask me this a few weeks ago, like someone within the HIV community. They're not HIV positive, but their family is. And they reached out to me, and they're like, how did you start in all of this? Like, where did you find the courage to start speaking? Because I had the moment of like, I don't know, it was just something that like happened. You don't really think about, you know, this is gonna lead me to here in this amount of years, you don't really think about that. When you think about, like, where you are now and where you were, where did you get that strength to be able to speak—to be like, I'm okay with it.

Adrian Betts

43:07

For me, if you see injustice being done and you do nothing, then your sin is greater, in my opinion. And so I cannot sit by and watch people be abused or mistreated. And, or I have the agency or the ability to change that. So it's never been about me—initially, it's been about other people and helping other people is how I found my voice and my agency and was able to then, you know, speak up for myself. It's much easier. And we see this actually in our youth program. If you have a doctor is not listening to you, sometimes your best friend will be the best person to speak to that doctor, not you, right? Because sometimes you're better at speaking for others than you are for yourself. And I think that's where it began for me, in that helping other people came first. And then through that, I learned how to help myself. As you said, I wouldn't change anything, I wouldn't change my status. It's definitely made me who I am today. Because maybe a better person less selfish than I was. I'm still pretty selfish, as far as I'm concerned, but ultimately, I think wouldn't trade thing.

Ashley Murphy

44:15

You just want to help people. Initially, I don't know where that even like came from like, I've always volunteered since I was like three. Like I think the first AIDS Walk I ever went to I was three years old, but I didn't realize it was an AIDS Walk. I just remember that the shirt fit me like a dress. But I just been doing this stuff for so long. And I guess once I finally realized what I was doing it for, it all just kind of made sense. I don't know just that. One thing just kind of led to another, which just kind of led to another. So being able to kind of like go chronologically and be like how did all this happen? I don't really know. The first thing just kind of started with having HIV.

Adrian Betts

44:53

Yeah, it just happened. I sort of followed it and away we went.

James Watson

44:56

Wow. You guys are so—I hate to interrupt. But this was so much fun and so engaging, and I can't thank you enough.

Adrian Betts

45:08

James, thank you. I really enjoyed this.

James Watson

45:09

You obviously have much love for each other, which I appreciate. So I would like to ask you, before we close, each of you five rapid fire questions. And I will, maybe ask you, Adrian, first, and then we'll close off with Ashley. These are just yes or nos. That's all you get yes or no. Or you have to choose one or the other—either or I guess. So a month without a car or a month without internet, Adrian?

Adrian Betts

45:36

A month without a car.

James Watson

45:37

Be loved or respected?

Adrian Betts

45:40

Loved.

James Watson

45:41

Loose guidelines or clear directions?

Adrian Betts

45:44

Loose guidelines, every time.

James Watson

45:47

Ability to pause time or rewind time?

Adrian Betts

45:50

Probably pause. Deliver that moment would be awesome.

James Watson

45:54

A pet pig or a pet goat?

Adrian Betts

45:58

Both.

James Watson

46:01

You can't give me one or the other. All right.

Adrian Betts

46:03

I had a farm, dude.

James Watson

46:04

Oh, that's right. Both. Why not? Okay. Ashley to you, a month without a car or a month without internet?

Ashley Murphy

46:11

Oh, a month without a car. I don't even drive.

James Watson

46:15

Too easy. All right. Be Loved or respected?

Ashley Murphy

46:19

I'd say loved.

James Watson

46:20

Loose guidelines or clear directions?

Ashley Murphy

46:24

Clear.

James Watson

46:25

Ability to pause time or rewind time?

Ashley Murphy

46:29

Pause time.

James Watson

46:30

A pet pig or a pet goat?

Ashley Murphy

46:33

See, I want to say both, too, but I can't. So I'm going to go with a goat.

James Watson

46:38

Goat.

Adrian Betts

46:38

You can say both, break the rules.

James Watson

46:40

Break the rules.

Ashley Murphy

46:41

See, I don't even eat bacon, so I don't really see a need. I mean, pigs are cute. But I mean goats are cute, too.

James Watson

46:47

Goats are cute. Well, thank you so much, both of you. I really appreciate the time you took with us today.

Ashley Murphy

46:52

This has been awesome. Thank you so much, James. Thank you, Adrian for talking.

Adrian Betts

46:56

It's been a blast. And Ashley, always a pleasure.

Ashley Murphy

46:59

Talk my ear off any day. Please.

James Watson

47:03

That's it for us this month. Thanks for tuning in. We hope you'll join us next time on pozcast. And if you have any comments or questions or ideas for new episodes, send me an email at pozcasts4u@gmail.com. That's the number four and the letter U. Pozcast is produced by The Positive Effect, which is brought to you by REACH Nexus at the MAP Center for Urban Health Solutions. The Positive Effect is a facts-based lived experience movement powered by people living with HIV and can be visited online at positiveeffect.org. Technical production is provided by David Grein of the Acme podcasting company in Toronto.

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