Interview with Al Hungershafer

19-02-19-AH.docx




“HIV in My Day,” Al Hungerschafer (February 19, 2019)

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“HIV in My Day” – Interview 64

February 19, 2019
Interviewee: Al Hungerschafer (AH); Interviewer: Ben Klassen (BK)

Ben Klassen: Sitting down with Al this afternoon. Thanks so much for being here and sharing
your story with us.

Al Hungerschafer: You’re welcome.

BK: We’re looking forward to hearing it. As I said just before we started recording, we’re going
to start by asking you how you first got involved in the gay community or started engaging in
gay life.

AH: And when you asked that, I really had to think back and, oh, how did I actually start in the
gay community? And I think it was in the mid – like 1981 and I was still in high school, but had
– well, actually started going to the clubs downtown and really enjoying just going to the clubs to
dance, and have a good time, meet people. Yeah, so that was kind of how I started.

BK: And that was here in Vancouver?

AH: It was here in Vancouver, so it was mainly the Gandy Dancer and Love Affair and Odyssey,
those were kind of the main ones. There was a few others – Buddy’s, yeah Buddy’s was good –
and couple of other ones that I’m trying to remember the names of now. It was a long time ago,
and it’s kind of sad because most of them aren’t around anymore. Celebrities, a little bit later
actually that I started going there.

BK: What did the community look like in those very early years?

AH: It was kind of the disco era, so it was really fun. It was really about just going out and
dancing and having a good time, and kind of hooking up for a lot of people, maybe not for
everyone. I was still pretty young, and I was pretty cautious at that time, so yeah, because I was
young and most other people were older.

BK: And how did your relationship with that community develop as you became an adult?

AH: Well, it kind of went through phases, right? A lot of it changed because of HIV. So, in ’82, I
was in high school, and I can still remember sitting in the hallway with a group of my friends and
one of my friends said, “Have you heard of this new disease? It’s sexually transmitted, it’s
deadly, and there’s no cure. We’re all going to die.” And that was kind of how I first heard about
it, so you know, being seventeen years old – seventeen, eighteen – it was very scary. And
knowing then that it was really predominately affecting the gay community at that time, I think I
kind of pulled back quite a bit and – yeah, pulled back a lot, actually. Still went to the clubs a
little bit to dance and that, but it was challenging because you’d meet people and you kind of
might want to hook up, but there was a real fear, especially being so young. It’s like, I’ve got so
much to look forward to in life that I don’t want to take any chances, so I put a lot of walls up. It





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was like years before I really got re-engaged with the gay community. It may have been actually
– I’m trying to think if it was after I was diagnosed or not. It’s been so long now. I think it was
before, but I’m trying to remember. Yeah, because then I kind of developed a core group of
friends and we would go out and not just party, but we’d get together and go to restaurants or go
to the beach or do hikes and things.

BK: So, the first information you heard about HIV was from this classmate of yours?

AH: Well, it was actually somebody that I was kind of seeing in high school. It was kind of one
of those where you’re in high school and you’re kind of fooling around with a little bit of
everybody, but this one individual kind of just came in and said that, kind of dropped a bomb on
all of us, and we were just like what’s going to happen now and are we at risk? Because he’d
kind of – he was my first and met him and somebody quite a bit older at the same time as well,
so actually the first time was a threesome. And so, there is a lot more risk, not from being with
him, but more this other individual who was really obviously quite active in the gay community,
and looking back now, a bit of a predator type thing, but at the time, you didn’t really think of it
that way. So, it was a bit scary.

BK: So, that’s really early on, 1982, that you’re hearing about this. What about as a couple years
go on – were you getting any information about HIV and what was happening?

AH: Yeah, a lot through what was happening in the media, and seeing how people were getting
sick and dying very quickly – how scary that was, and really that there wasn’t anything they
could do to stop it at that time. Seeing activism start, and you know, how that was coming about,
but at that time I was still quite young, I wasn’t really affected by it in that way, and I was
working now and really was kind of focused in a different area. Like, I kind of separated myself
basically from the gay community in a way and just kind of worked with my work friends. Hung
out a little bit, but like I said, it was probably about five or six years before I really started getting
involved in the gay community again, joining different groups – like hiking groups, and we
started line dancing, and met some friends that way, and that was a lot of fun.

BK: Most of it was through the mainstream media?

AH: Most of it. Thinking at what point – I’m trying to remember when I reconnected with and
had a group of gay friends and we were talking about it then more so, and that must have been
the late ‘80s, early ‘90s, or even if I had that group before I was diagnosed or if it was after I got
diagnosed that I needed to connect with – honestly, that I can’t remember. I’m trying to think
back and it’s like, okay, when did I really form a group of gay friends, and I think it was before,
but I couldn’t honestly tell you. Oh no, wait a minute, let me think – yeah, it was before. Yup,
now I remember, because actually having to tell some of those people that I was positive was a
challenge, right, so I already made those connections beforehand. It is a long time ago actually.

BK: It is. We’re talking about thirty years ago. That’s a while.

AH: Yeah, so yes, so I had a group of gay friends that I hung out with and did different things
with, and we talked about it, but none of us were positive in my group. And even within my





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group that were still kind of socially connected, a lot of us have drifted away, but I still think that
I’m one of the only ones that’s positive from my core group of about six or seven individuals.

BK: So, I guess a lot of the media coverage was about how people were getting sick and dying.
Were you getting any information about safe sex for instance? Was that out there at all that you
were able to access?

AH: I think that came about, but first and foremost it was a gay disease, so it was almost like
anything related to being homosexual was risky, and so it had probably more stigma back then
than now, but there’s still a lot of stigma around it. But it was just like, oh my gosh, if you were
gay, then really people would take a step away sort of thing. It was just bad to be gay because
you were now potentially at risk of this life-threatening disease no matter – just coming into
contact with you. In the gay community, there was probably better understanding as information
came out and I think the gay community did a great job of actually resourcing information and
communicating it amongst the community and amongst the healthcare professionals, because a
lot of times the people living with the disease were the ones coming in to the doctors saying,
“Hey, I’ve heard about this new medication. What do you know about it or do you know
anything about it?” And having the conversation with their doctors, which I think in a lot of ways
really changed the course of medicine – that hadn’t been done before. Yeah, we were really
advocates for our own health, so it was significant.

BK: I guess the other issue with some of that information around safe sex is that if you weren’t
really going to clubs or the baths or coming into the West End, you might not actually see that
information.

AH: Yes, and I think there was – and again, as things progressed and we learned more about it,
there was more conversation about safe sex, safer sex, wear a condom, use protection, and
definitely by the time I was infected, there was enough knowledge about what you could use for
protection as a means of protection. There was still a lot of misunderstanding and
misconceptions around it, but there was a knowledge of what were really the main risk factors
and what you could do to help reduce the risk of transmission, especially during sexual activity
and drug use.

BK: So, you said that one of the ways that you responded to this early information was to pull a
little bit back from the community…

AH: Yeah, for sure.

BK: … which I can completely understand why that would be the reaction. How else were you
responding to some of that early information? Were there other responses?

AH: You know what, it was a combination of things too, right, because it was also being really
young, really just coming to terms with my sexuality at a time where it went from almost being
acceptable, because it was kind of the disco era, where it was really fun to go clubbing and it
didn’t matter who you were – you could dress up however you wanted and go out dancing, and
you’d just be out on the dancefloor dancing with anyone type of thing – to when the epidemic





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hit, and all of a sudden, the gay community was now a risk. And being very young and going
from, “hey, this is really fun” to “this is really scary and I don’t want…” – you’re vulnerable in
more ways than just being at risk of contracting HIV now, because you’re also a target for
anyone who was homophobic and there was now a reason even more to be a target. So, that was
really scary. And again, it was a different time because there wasn’t – people hooked up in very
different ways than they do now a lot of the time. There was more the bathhouses and more back
rooms, even just public sex and the parks and that, or even just placing ads in the newspaper –
people actually did that, you know? Thinking now, that was a lot more vulnerable to do that, but
people did. And now, I think it’s a lot easier to find ways to connect. I wouldn’t say you’re not as
vulnerable, but in some ways, the ways to hook up were vulnerable and some ways seemed more
fun, too.

BK: Like having sex in the park. [Laughs]

AH: Yeah, not that I can say I really did that often, but there was kind of that risk factor as well,
and the anonymousness – what’s the word I’m looking for?

BK: Yeah, anonymity.

AH: Yes, the anonymity of it, yes, for sure. Yeah, the anonymity – I can’t even say… [laughs]
How do you say it?

BK: I think it’s anonymity, but it’s a mouthful. [Laughs]

AH: I’ll try it again. So, the anonymity of just having sex in the park with somebody you almost
can’t even see sometimes, so there was a bit of excitement with that. Yeah, it’s changed a lot.

BK: It was a crusier time.

AH: For sure, yeah. There’s been a lot of changes, maybe some for the better, some maybe not,
but like you say, for me, I put up a lot of barriers, a lot of walls. And there’s other reasons for
walls being there too, and some of those walls have just become enforced and some have just –
there’s not too many that have come down yet.

BK: You said you started to get more involved, maybe not in the community per se, but you had
a group of gay friends again. How did that re-entry into the community come about?

AH: There’s a couple ways that it did. I think one of them was you could only kind of hold out
on things for so long, then you really just say, hey, this is who I am, and I really just need to be
that person. So, I think there was a gay man’s hiking group that really intrigued me and I
thought, well, I like the outdoors and it would be a good opportunity to meet people that’s really
not just for sex, right, it’s really getting to know people. And what was it called? I think it was
called Out and About, and it was just hiking, there was all sorts of different social activities, and
so I signed up for that and kind of met a group of people through that that became my social
network. And started line dancing as well, and so I met some other friends, and so I had now two
little social networks that came together a little bit. You know, we’d do different activities, or go





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on trips or go hiking or go to the beach. And go to the clubs – there was a lot of times too, there
was a safety factor in going to clubs with a group of people, because you’d go in as a group and
you’d leave as a group, and sometimes people would hook up, and that’s fine, but you were
always able to leave with somebody if you went with a group. And so, there was a bit of a safety
factor with that as well where it’s like you’re not leaving the club on your own. Or nobody was
interested in me, or you know, kind of a defeated aspect of it – there was comfort in knowing
that, hey, okay, let’s go somewhere now, or let’s go get something to eat at one of the restaurants
that’s open or something. And then, if you left after that, that was fine, right, but you weren’t
walking out of the club on your own. That was okay.

BK: Do you remember, for lack of a better phrase, when you were re-entering the community,
did you see HIV a lot? Was HIV something that was prevalent and visible at the time?

AH: Yes, because this was like late ‘80s, early ‘90s, and so there was. Even with some of my
friends, there were people who they knew who had or who had passed away or were very sick,
and even probably some of our outer circle, every once in a while, you’d go, okay, they’re not
doing so well, or whatever. And at that time, people tended to get sick and die fairly quickly,
right, so they would just kind of drop off the scene, and depending how close you were, you
either maintained that connection and would go and spend more time with them, either in their
home or in the hospital, and other times, it was just somebody that was kind of on the outskirts,
and you’d see them and then you’d not see them anymore. And then you’d hear, oh yeah, they
passed away. It kind of sounds awful to say, but in a way, you just kind of built up a wall to that
or a callous to that where it really hurts at the start and then it’s almost like unless it’s somebody
you’re really, really close to, it’s like, okay yeah, somebody else. Because it was so – it wasn’t
like once every three or four months, it was a couple a month that you would hear about. It’s
like, okay. And that was scary too because then it’s like, okay, when am I next or, you know,
will I be next?

BK: That sounds terrifying.

AH: It kind of was, yeah. And again, you’d think – at that time, I was probably twenty-four,
twenty-five, so still very young, right? You know, I was working, but at that point I hadn’t really
decided what I wanted to do as a career, kind of working toward that but not really sure, and
working in a job where I made okay money at the time, so I was okay to be able to do things and
I wasn’t struggling. Yeah.

BK: How does your diagnosis fit into the story? I guess that’s maybe where we could go next.

AH: Okay, sure. So, that kind of all plays into life, right, because where I was working at the
time, I kind of met someone who was working at a restaurant near where I worked, and I’d go
for dinner and kind of got to know this person, then started dating the person. And we’d, you
know, gone out on a few dates, and then we decided to go away for the weekend, and… This
story is always a little bit harder for me, it’s always a bit more raw, because we’d gone away for
the weekend, gone clubbing and then gone back to the hotel. We were drinking a little bit, but
I’m not a big, big drinker, and we’d cracked a bottle of wine, and I kind of blacked out and kind
of came to every once in a while. And at one point, he was having anal sex with me, and I





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remember him in my ear saying that he was going to cum inside of me – it’s like, at that point,
there’s not a lot I can do, and it was what it was. I kind of don’t remember a lot after that. I
remember waking up in the morning and kind of “what exactly happened?” sort of thing. And I
think the thing that really bothered me most, because we’d been pretty safe prior to that – I’m
going to be straight forward, I honestly think that he intended to do what he did. And it was in
part because we’d had conversations about, oh, what would you do if you were infected and that,
and he at one point said, “Oh, I’d see how many people I could infect,” which was like, why
would you do that, right? Again, we were both twenty-five, and you look back and you think, oh
that was really stupid. Why would I be with someone like that? But it was kind of one of the first
relationships I was really in other than in high school, and it ended right after that.

So, there was a few other things that came up, because I remember when we first started –
because this all happened in about a month and a half, so it was short, kind of compact – I
remember him getting a phone call that just seemed really odd, and it was kind of like he really
wouldn’t say too much, but was like, “Okay, thanks. Thanks for the info,” and hung up. And it’s
like, in looking back, I was thinking, to me, it just seemed like either one of his previous partners
had just informed him of something – because that’s what I did with him. When I found out, I
phoned him up and I said, “Just so you know, I’m positive, and I’m pretty sure that it came from
you because there’s nobody else that it could have come from. And that’s it. I don’t ever want to
see you again.” And that ended there. Literally kicked him out, because at that point we were
kind of living in the same place, and that was the last I saw of him. But that was – I honestly
haven’t told too many people that story because it still is really tough because it’s kind of one of
those – you can see the signs after the fact, but when you’re in it, it’s like, how could I have been
so stupid to miss this, you know? And it wasn’t all bad either, so the relationship was kind of fun
at the time and it was great, but I was being really, really cautious and not proceeding too fast,
and I think that was an opportunity to go further than I was ready to go at the time.

And it wasn’t long after that – it was like a month after that that I came down with what I
thought was just a really bad flu, slept for two days straight and just went, oh no, something’s not
right here. I know enough about what HIV is, because at the time we knew enough about what
the symptoms were, and I went to the doctor and I said, “Hey, I think I’d like to get tested for
HIV.” And he started asking me all these questions, like why do you want to get tested? But he
was saying, okay, why do you want to get tested – that’s how it came across to me – and what
did you do? And to me it was like I didn’t want to answer the questions, I was scared, I was
embarrassed, I just kept saying, “I just want to get tested. I’d just like to get tested.” So, he gave
me the req form and I got my test done and it came back negative. I was diagnosed with mono,
so that was a relief, but then it was like, okay, but you have to come back for a retest in six
months, because in 1990 they thought the window period was six months. I can keep going with
the story…

BK: Sure.

AH: … Because that’s – so basically, after that, it was kind of like, okay, I’d given the guy the
boot, just kind of went to work, did my thing, went out with some of my friends, but wasn’t
really thinking too much about it, because it’s like, okay, it was mono, that’s great – huge relief.
But then, this was in August, and then in November I have what I call my hell week where I





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pretty much couldn’t sleep at night, I had the night sweats so bad that my sheets were just
drenched, and I knew in my gut that I was positive. So, when I got the call to go in for the
follow-up test results, I knew I was positive. I was actually calmer than the doctor was, ‘cause he
was a relatively new doctor, and this was at the clinic that I’d gone to. I didn’t go to the doctor
that I’d gone to before, because I’d gone to one closer to work. Like I said, he was a relatively
new doctor, he’d never had to give anyone an HIV positive result before, so he was really
nervous, but he did a really good job. He basically talked to me more, explained to me more
what HIV was, how it worked, and he took some time. He asked me what my spiritual beliefs
were, what kind of support system I had, and before I left, he said, “You’re going need to do
three things.” He said, you’re going to need to find a doctor who specializes in treatment,
because he wasn’t able to do that, that I was going to have to start medications, and that I was
going to have to find a good support system outside of family and friends, because family and
friends really didn’t know how to deal with that kind of information at that time. And I always
like to say I took his advice and it worked out pretty well because I’m still here, but it sure
wasn’t an easy go.


The first thing I did was find a doctor who specialized in treatment, and he right away put me on
AZT, which we all know how wonderful that was. You know, it was really toxic, a lot of side
effects with it, and it really didn’t work that well. And you had to take it every eight hours –
sometimes people say six hours, but whatever – you just had to take it, everybody with their
alarms or beepers or whatever. And when you’re working and you’re trying to take medications
without people knowing what’s going on, and medications that have these awful side effects… I
can still remember, I’d take my pills in the morning before I’d go to work, and by the time I’d go
down to my car, I’d have to turn and go to the garbage before I’d go to the car, because I’d throw
up all this white foamy stuff, and it was just awful. And I’d always have something to rinse my
mouth out with, and go to work and do your job, and midway through the day, you’d take your
next round and try not to let people know what’s going on. That was really tough, you know,
because I worked in a grocery store, but I worked in a photo lab in a grocery store, and we were
one of the busiest photo labs in North America. We did one-hour photo, and we had lineups of
people all the time, so it was like non-stop, go go go, having to be polite with people all day
long, and working with your coworkers, which like anywhere you work, there’s different
personalities, and some you got along with great, and some you didn’t. And trying to hide this
illness that you knew if you said to people, you don’t know what reaction they would give you,
so that was really, really tough. That was probably a couple years that I was doing that.

And you’d have to go every three months for your bloodwork, and I remember one day going in,
got my bloodwork done, went to the doctor, and the doctor’s looking over my charts. And he
looked at me and he said, “You know, things aren’t really going well, and at this point, I really
don’t know what else to do with you.” And I think I don’t really remember much after that other
than I left the office and I was walking down the street and thinking, well, what exactly did he
mean? Like, does it mean that that’s it, like get your affairs in order, and you don’t have long? Or
does it mean he just doesn’t know what else to do? And I kind of took it that way. I thought,
okay, he doesn’t know what else to do, I’m going to find someone who does. And I got a list of
doctors, and I kind of interviewed a couple, and the one that I chose was the one that when I
went into his office and sat down, he looked at me and said, “Okay, tell me about yourself. What





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do you like to do?” He got to know me a little bit, right, and we had a few laughs. And then he
said, “Okay, if you were my patient, this is what I’d do. I’d put you on these medications and
we’d see where it goes from there.” I went, “Okay.” I didn’t make a decision right then, I thought
I’m going to think about it for a couple days. I left the office – I’d pretty much made the decision
in my mind, but I thought I’m not going to rush into this. Two days later, I phoned the office up
and said, “If he’s still taking patients, I’d like to be his patient.” And they said, yup. Started with
the doctor and it’s probably the best decision I made in my life, because I truly believe that if I
hadn’t done that, I would not be alive today.

And we started a relationship in that I went in, seeing him, got my medications, and then he kind
of said, “Hey, there’s some new medications coming out. They’re doing studies for them. We
don’t know how good they’re going to be, we don’t know if they’re going to work, we don’t
know what the side effects are going to be, and they could be anything from the normal ones –
nausea, diarrhea and that – to death, because they’re studying them. But at this point, you know,
you’re CD4 counts are going down, the AZT isn’t really doing a lot, so you don’t have a lot of
other options.” And it was kind of a try or die decision, and my feeling was I don’t want to die,
so I’m going to try. And I went on any study that I qualified for and was able to go on, and it was
a lot of different medications that caused a lot of different side effects. And again, thinking AZT
was hard to take, because you had to take AZT every six or eight hours on the dot, try taking five
or six different medications three times a day, all at different times, because some you took with
food, so that was easy – you’d take a meal, take your pills. But then, some you had to take on an
empty stomach, and with those ones, you sometimes had to take them at different times from the
other ones, so some you would have to take before you ate and some you’d take after you ate,
and there was always about a three-hour period around when you ate where you couldn’t take
your pills. So, three times a day, there’s this three-hour block that you can’t take your pills with,
except for the ones that you take with food, and you had to time this out every day without fail.

And it was extremely challenging, but I did really well with it, because I can honestly say that in
all the years that I’ve been taking my medications, I’ve probably missed maybe a dozen times,
and a lot of that’s been travelling – like, if I’m travelling, it’s like, different time zone, we start
now. Occasionally, it’s because you’re too sick that you can’t take it or you just forgot, but I
rarely forgot. It was just like, nope, it’s time for my pills. And my friends were great, too. They
were like, okay, when do you need to take your pills? When do you need to eat? Same with my
family. It’s like, okay, what time do you need to eat? And when I think back, it’s like, wow, they
were great, they were really understanding that you need to do this, and I think in part, it’s
because I needed to do it. So, it wasn’t like I said, oh, it doesn’t matter, don’t worry about it. It’s
like, no, I need to take my pills at this time, so they’re like where do you want to eat? When do
we eat? And that was great, but it’s like holy smack, you think back and you think we’ve come
so far, right? And I often say that the fact that I made it through that period is amazing, and I
wouldn’t be here today if I hadn’t taken that journey – I truly don’t believe it because I know that
I wasn’t doing well. And even my doctor a few years later, we were reviewing my charts, he
kind of said, “Look back on this date right here. Your CD4 count was eighteen. I gave you two
or three months. Look where we are now.” And that was surreal – it was scary.

But I also, from my perspective, I always thought I don’t want to die, so I’m going to do
everything I can to be healthy, so that was eating a fairly healthy diet – like, I’m not crazy. I like





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food too much to really miss out, but I wasn’t eating a lot of bad food. I’ve never really been into
drugs, I drink but really in moderation, but at that time I didn’t drink a lot because it was really
too hard on the system on top of the pills. Exercise, I’m a pretty active person, so when I had an
opportunity to get out and do stuff, I did, but I was also exhausted most of the time, and so there
was a lot of times where it was just like you’d be lying on the couch, it would be a beautiful day,
and it’s like, I want to go out, I want to go on a hike – I can’t move, I have no energy to do
anything. It was so hard to deal with that aspect of it, because when I stopped working, there was
like a six-month period where I was like that. That was probably the worst that I was at, where I
really just didn’t have energy to do anything, and that was kind of, again, that was a compilation
of a whole lot of things going on at one time – kind of finding the medications that worked, and
there was a whole journey with that as well. What medications are working, what studies am I on
right now? Is this pill working for me? And do you complete the study or if there’s too much of a
side effect, do you drop out of the study? And if you drop out of the study, how does that affect
your ability to go on another study or get on a medication?

And the side effects were awful – like, they were just horrendous. Most common side effects,
people will tell you, was nausea and diarrhea, which was brutal, and there’s stories – and I’m the
same way – people would plan their journeys where they knew they could access washrooms if
they needed to. I know for myself, and I’ve only recently gotten past this is I always used to
carry an extra pair of underwear with me just in case, and it’s still hard to break that habit
because even though they say, oh, things are better now and it’s great, there’s still times my
system reacts really weird, and it’s like, okay, well is it the medications or is it something else?
But it’s still too familiar. So, when people say, oh, it’s great nowadays and you take one or two
pills a day – which is true, I take two pills a day in the morning with my meals, and it’s so much
better. But I still think sometimes that my system – you know, we’ve been putting so much crap
in our bodies for so long that I think there’s times when it just doesn’t want to play the game.
And it’s like okay, today your stomach doesn’t like this, and deal with it. Yeah, I can continue
with other side effects that I was affected by.

BK: Sure. Yeah, let’s do that. That’s a good idea.

AH: So, those were the most common ones, but there were other ones that came with the
medications. And not everybody got these side effects. Those who did, sometimes it was just a
small group of people. For me, one medication caused ingrown toenails, and it was so painful,
and I was actually playing in a competitive tennis league, the Vancouver tennis league, the gay
men’s tennis league at the time, because I was trying to keep active. I wasn’t working but I was
trying when I had energy to go out and do things. I was trying to be as active as I could, so that
was one thing, and I enjoyed that. But playing tennis with ingrown toenails was awful, and I had
to have five procedures done to remove ingrown toenails before we could switch to a medication
that actually worked better and didn’t cause that side effect, so I was really glad when we
switched from that. The worst part about it though was the procedure to have the toenails
removed was not covered by MSP, even though it was a direct side effect of the medications I
was on, so I had to pay for those procedures out of my own money on a disability income, and it
was like, this doesn’t make any sense at all. It’s not anything I have any control over and it’s a
direct side effect of the medication, so why do I have to pay for this? But that was that one.






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One of the side effects – I had a bad bought of pancreatitis, which I didn’t realize that I was
suffering. I was on a little holiday in Europe at the time and I just thought I got food poisoning
and I got sick from that. But I got back, and my doctor was looking at my results, and all of a
sudden it’s like, “You’ve got pancreatitis. You could die. We need to switch these medications
right now.” It’s like, oh, okay, I just thought I had food poisoning. [Laughs] So again, that was
one. And then lipodystrophy is the other side effect that for me has probably been the most
challenging thing I’ve had to deal with being HIV positive. Like, overall, my health has been
pretty good, but this – and lipodystrophy is the fat displacement. So, the medications have kind
of caused the liver to not process fat properly and it doesn’t know where to store it in the body
anymore. So, what’s happened for me is I’ve lost a lot of the fat in my face, in my legs, and I’ve
accumulated a lot of fat in my neck area. Not everybody got this side effect, but people who did,
some people got very big stomachs – they called it crixi belly – and then some people got fat in
the neck – it was called a buffalo hump – and that’s what I got. And it’s been the most
challenging thing.

First, again, I’m pretty active, and when I stopped working and started getting enough energy
again, which as I said was about six months after I stopped working, I started finding I have little
bit more energy – what am I going to do to keep myself healthy? I got back into the sport that I
competed in all through high school which was the sport of springboard platform diving. So,
here I am in a sport where you wear a teeny-tiny bathing suit, stand on the end of a diving board,
and pretty much say judge me, and I had this really noticeable fat mass. But I always felt that if
this is the worst thing that I have to deal with, it wasn’t going to stop me from doing something I
really enjoy doing and was keeping me healthy. And I’ve actually gone on and competed in two
World Master’s Games and I medalled in both. I volunteer a lot for the sport, so I’m an official, I
train our officials, so I’m the head provincial official, and I volunteer coach, so it’s one of the
ways I keep myself active and I diversify how I keep myself active, and there’s a little reason
behind that as well. But going back to the lipodystrophy, for me, every day it’s an issue. I can
leave the house and feel pretty good about myself and think, hey, you look pretty good today. I’ll
be walking down the street, and almost every day somebody will walk by and just stare, and it’s
kind of like a punch in the gut, because I go from feeling pretty good about myself to all of a
sudden thinking, okay, either they know what this is and they know I’m positive or they don’t
know what it is and they’re just trying to figure out what is going on there, that’s really kind of
weird. And I go from feeling pretty good, I drop my head and just keep going.

It’s kind of a bit of body dysmorphic disorder because I go from feeling pretty good to feeling
like the Hunchback of Notre Dame, like I’ve got this big weight on my shoulders. And it is
probably the biggest challenge that I’ve had to deal with, and when I look at pictures, I always
have a hard time in photos because what I used to look like – and I know we all age, but this has
done a number. Like, I don’t have cheeks anymore and I have a really big neck. I’ve had two
operations to remove a lot of the fat, I have two big scars at the back of my head on either side
where they removed big pockets of fat from either side and they did liposuction all through the
back. What is there now has actually come back quite a bit, and diet and exercise really don’t
play an effect on it. I’m kind of suffering a bit with headaches again, so I’m getting kind of
tension headaches and was actually just last month talking to the doctor about the possibility of
maybe having another surgery, but I’m not excited about that. So again, it’s one of those things
where I say, hey, I’m still alive and I’m still able to do a whole lot, but it’s a big challenge. Like,





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this is just devastating in a lot of ways. But again, had I not gone on the journey of the
medications, I wouldn’t be here today. And I also say that was a real change in the course of
HIV, so had people not been brave enough to go on those studies, we may not be in the same
position we’re in now either. Yeah.

BK: Absolutely. At the time, did you see that as a way of contributing to the community? First
and foremost, it was a way for yourself to…

AH: Really that was what it was about. It was just like, okay, there’s an option that I might be
able to take medications that might help me out, and I can still have a life. At this point I’ll do
anything. It wasn’t – no, there wasn’t really a thought that this would be great for the community
or not, it was really self-preservation, and that’s just the way it was. You know, looking back
now, it’s like, hey, I played a role in that and that’s kind of cool, but I just wanted to live.

BK: Did you want to say anything else about medication and side effects?

AH: There’s lots of things I can talk – medications, oh my god. A couple things, now even just
taking them every day, they are a reminder every day – you can’t get away from it, right? The
idea of taking a shot once a month, I don’t know if that would work as well for me, and there
was a point where I kind of thought why did this work so well for me? Why was I able to, for
twenty-five years now or whatever – however long I’ve been taking these medications, I’m
twenty-seven years positive… Yeah, I guess I started right away, so twenty-seven years – how
did I go so long with really not missing that many doses, and I think back and I attribute it to two
reasons. One, being an athlete and being very disciplined because I was a competitive athlete
when I was growing up, so that was instilled. But I really think it goes back to when I was
young, like really young, I was allergic to almost everything – well, I say almost everything, I
was allergic to a lot, and I would get sick just from brushing my teeth because I was allergic to
toothpaste and that sort of stuff. So, in grade three, four, five, I used to have to get shots, and it
started out, I had to get shots three times a week, and so after school, I’d get on the bus, go to the
doctor, get a shot, come back home, and then play with my friends. And so it started for the first
year it was three times a week, and then it was twice a week, and then it was once a week, and
then I stopped getting shots, and then I also didn’t have the reaction to the things that I was
allergic to nearly as much. I still have kind of hay fever and pets will give me itchy eyes and that,
but nowhere near to what it was like, and so going through that process and knowing – and also,
when I missed going to the doctor’s office, I’d get in trouble – I think that really instilled that
kind of work ethic, that this is what you need to do for success and you can’t miss any. And if
you do it, then you’ll have good results. And so, that may be where, for me, with the other HIV
medications, it just followed the same course. It’s like, if I do this, I will have good results. So,
that’s what I kind of attribute it to.

BK: Certainly, if you have anything else come up along the lines of medication and side effects,
we can talk about it later. It’s an important part of your story, obviously. One of the other things
that the doctor said when you were diagnosed is that you needed to find some support, so what
did that part of your journey look like?






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AH: Interesting, and again, this is where everybody’s journey is different, right? I had my
friends, and I told friends before I told family, and some of the friends were pretty good about it.
They were saying okay – I mean, it was hard, there were tears, and blah blah blah, and then
“we’re here for you.” I actually remember one friend was almost too helpful and it was like, oh,
very caring, very emotional, and in the same day that I told him this, he said to me, “And if you
get to the stage where you can’t go on anymore, I’m happy to help you end your life.” And I just
– it actually ended the friendship, because A) I just thought, I’m sorry, I’m not going to get there,
and B) I didn’t ask you for that and I don’t really want you to do that. And so, it really
dramatically changed the friendship where it was just like, no, I’m sorry, no. It was too much and
too raw and almost too personal that I thought, yeah, I’m sorry, I don’t think I want this person in
my life. And it was very empowering in a sense, it was very easy for me to just turn somebody
off in a friendship and say nope, that’s not somebody I need in my life right now. Other than that,
support-wise, friends were great.

And when I stopped working – and that was a journey on its own. You know, basically, for the
first probably two and a half, three years of being diagnosed – maybe a little bit longer – I went
to work, did my job, and I’d do other stuff with my friends after and that. And then it got to the
point where all I could do is go to work and then go home and crash. And I went to my doctor
and I said, look, this is what’s going on now and I really don’t have any energy to do anything.
And we had a good conversation. My CD4 counts were still going down, and he said, look, it’s
kind of quality of life, and why don’t you take a break? Or he said, “You don’t need to work
anymore,” and I said, “Well, I don’t know if I’m ready for that yet,” so why don’t I take a break
and go back in a couple months and see if I just need a rest, which is what I did, took a couple
months off, went back to work. And then I lasted a couple more months, and then it was like
nope, can’t do this, and had to stop working. And that was odd, because I worked with this group
of people for ten years and all of a sudden, I’m not going to be working anymore. Well, why? I
can’t work anymore.

And I think they knew enough that they weren’t asking the questions, but it was still really hard
because it was, “Well, are you coming back?” “I don’t know.” So, there was never a, oh, you’re
leaving, the kind of send-off where somebody leaves, because it was really unknown. And so, I
have not gone back. There’s some of the people that I worked with that are really good friends
that I see, but a lot of the other ones I just don’t, and it’s almost too weird to go back in now.
Because I still technically work there, but I haven’t worked with these people for twenty-
something years, and so there’s a lot of, “Well, why aren’t you working? You look pretty good.”
It’s like, yeah, but I know for me, I get run down really quick, so I wouldn’t last more than a few
months at work. I can always tell, because if I start doing too much, I start getting cankers in my
mouth, and that’s the first sign that you’re overdoing it. And even going on a holiday for two
weeks, if it’s a holiday where I’m doing a lot, by the end of it, I’m not rested, and I come back
and I’m sick, and I usually get really sick after that. So, it’s like, if I were to start working full-
time, I don’t think I’d last very long. So, that was a challenge.

But when I stopped working, it was like, okay, well what are you going to do with yourself now?
First thing was I wanted to be as healthy as I could be, so I found a way to be physically active,
and then it’s like, well what else can I do to keep myself stimulated so I don’t go crazy? And it
was suggested – I think my doctor said, well why don’t you go volunteer with PWA at the time –





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so Vancouver Persons with AIDS Society. So, I went and I volunteered there, and I applied for a
volunteer position, and I started doing the front desk I think it was, and it was great because I
was kind of meeting some people and getting a connection with the community, because I don’t
live downtown, I live in Richmond, so I’m not really part of the downtown gay community. So,
even in that, and interestingly enough, all my friends who are gay, we live in the suburbs, so we
meet downtown and kind of get together, it wasn’t like we’re all the downtown people – that’s a
little side note. So, I started volunteering, and there was also some programs that were offered to
people that were volunteers, so some training sessions and things. So, I think I signed up for a
support session or something, and in that, there was probably about fifteen people in the session,
but I connected with somebody in that group really well, and we became really good friends. He
was straight and positive, and he was diagnosed around the same time I was, so we would meet
every Tuesday and we’d either meet at a coffee shop or at the beach, and we’d play games –
we’d either play backgammon or Mastermind or we’d play Frisbee, and we’d just hang out and
chat, and it was kind of our weekly support. He was great because I think he was a great support
for a lot of people, but that was kind of our day – Tuesday afternoon we met almost every week.

I was doing the volunteer work and I can still remember, I was probably there about six months,
and it was – you’d go in and every week there was, oh, someone’s not coming in today, and then
they’re in the hospital, they passed away. And it was like, again, every week. Oh, so-and-so
passed away yesterday, and so-and-so’s not coming in. And I remember in my head thinking I
can’t be in this environment, it’s not good for me. It’s not good to be around where people are
always dying, and again, it was self-preservation. It was like, I know a lot of the people there,
they were very helpful and they would be very supportive of other people and that, but for me, it
was like, that’s not me, I can’t do that. I need to find something else that will work for me that’s
not going to be mentally too stressful. So, I actually stopped volunteering in that capacity but
really got involved in sport, and it was a huge direction change, but it has worked really well for
me. And I came back to volunteering for the community when I was ready, and I’ve been able to
find places that really work well for me as a volunteer. So, I do HIV education in the high
schools – I go and I share my lived experience and then do the HIV presentations, sometimes on
my own and sometimes with a co-presenter.

And then I’ve found other programs that I’ve been able to volunteer with through Positive Living
and UBC. So, there’s the health mentors program, which is an amazing program, and it’s not just
specific to HIV, it’s anyone with chronic long-term health conditions, so that – in that, you get to
know a lot about different ailments and how similar a lot are and how different they are as well. I
presented to the UBC school of nursing for seven years, and there’s a couple other programs I
can’t remember the exact names of. So, for me, it’s been an amazing opportunity, and I often talk
about – oh, I’ll finish my thought first. So, other opportunities, even last year, I was one of the
team leaders for the Loon Lake retreat with Positive Living, so again, that was another amazing
opportunity presented to myself. I did the PLDI training, which is the Positive Leadership
Development Institute, put on by PAN or Pacific AIDS Network, so I completed that training
session, and that actually was what started me in the speaking, because part of one of the
modules is communications, and so they encourage public speaking, and it really was a catalyst
to me speaking in the schools, which just opened up the door to being able to have the
confidence to get out there and speak, and that was a really scary thing to take on. And if we
have a chance, I’ll talk about that as well.





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14


Yeah, so I know we started with support, but it all kind of – I mean, that really is my sense of
support in that because it is being part of the community, being able to contribute to the
community in a capacity that for me works really well. There’s times where I still feel kind of
isolated because I don’t work in an environment where I’m with the same people every day. I
often fly under the radar because often times people don’t know what I’m doing. There’s a few
lead people that may know, oh yeah, he’s working on this or he’s presenting for this or we’ve
asked him if he can help out with this, but even now, some of the stuff through UBC is more
UBC asks if I can help them with something, and then I’ll inform Positive Living I’ve been
asked to do this so that they’re aware of where else I’m being of use, because that reflects well
on them as well.

BK: So, when did you start moving back into the HIV world?

AH: Oh gosh, well – it’s probably been about ten years now, and it probably started with one of
the retreats, the Loon Lake retreats. And I think the first Loon Lake retreat I went on, I was really
isolated, and that was scary, because again it was being amongst a lot of people that were very
diverse, and I’m a pretty shy person actually. People probably don’t think that, but I am – like,
I’m comfortable with the people I know, but I’m not really comfortable around people that I
don’t know well, and I’m not usually the person who’s the instigator to go up and say, hey, how
are you doing, sort of thing. Getting better at it and you kind of learn that sometimes you just
have to, and I often say it’s more of a performance until you get comfortable with it, then it
comes more naturally. But yeah, I think that might have been the start of it, and then just really
coming to a point where I was able to say “I’m HIV positive” to people other than my family and
friends and then start to be more comfortable in saying, okay, if there’s something I can do to
help educate people about what it’s like living with the disease and how you can be better-
educated around the disease, then I want to be part of that.

Again, it really came about because – okay, I never finished the story about my friend who was
my support, because we were, like I said – I often say he was my rock and he ended up passing
away – he committed suicide because he started to suffer from really bad sinus headaches that
they couldn’t resolve, and they were basically crippling for him. And he’d gotten better and then
they started coming back and he basically felt that he couldn’t deal with it anymore. And that to
me was a real blow, because I didn’t really have a lot of connections with the HIV community or
with the gay community other than my friends, and even then, as you grow older, your
friendships kind of change and drift apart, and there’s a few that I stay really connected with and
then there’s some where we’ve just gone our own ways, and that’s okay. But when I lost him,
that was huge, and it took me a while to kind of deal with that, but he always encouraged me to
do a few things, and one was there was a support group in Richmond that he said, “You really
should go to this. You should check it out.” And he took me to a couple dinners and that, but I
wasn’t ready. And a couple of years after he passed, my situation changed where they had their
support meetings on Tuesday nights and I was always coaching on Tuesday nights, but that
changed, and then it was a different night, so I was able to go to the support meetings.

So, I started going and it just turned out that it was a good group of people that were fun to be
around, and the outreach worker was amazing, and when I did the interview when I signed up –





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when I started going to the organization again, I had to re-sign up because it had been a long time
since I’d been, and they asked if there was anything I was interested in doing for volunteer work,
and for some reason I said public speaking. I’m like, I don’t know why, because it scares me to
death – even today, it still scares me death, but I said it, and they were like, oh great, we’re going
to use you for that. They were just encouraging. So, the outreach worker was doing the education
programs and she’d said, well, I’m doing these. Would you mind coming in and if you’re
comfortable, maybe you can talk to the students for a few minutes. And I said, well, okay. So, we
kind of worked a little bit, I got to know what the presentation was like before I actually went in,
and I worked on a five-minute speech, talked to the students. So, the first day I went in with her,
after she’d done her presentation, she said, well, would you want to talk to the students? And I
went, okay. So, I got up, I was terrified, but I spoke to them for about five minutes, and then after
I was done, I kind of walked off to the side and sat down, and I remember the teacher coming up
to me, and he said, “So, you’ve never done that before?” And I went, “Nope.” And he goes,
“You were really good. They, the students,” he said, “I’ve never seen them so engaged in
somebody speaking. They couldn’t take their eyes off of you.” And it was like, oh okay, maybe I
can to do this.

And it was two-fold, because it was like, I say now, it’s probably the thing that I’m most proud
of that I do in my life, because I know it makes a difference. I know I go into the schools and talk
to high school students about something that’s normally pretty uncomfortable. When we’ve seen
the reviews after, and they always – probably eighty to ninety percent of them say they really
liked the presenter, they like the way the information is presented – I just have a way of talking
that’s very comfortable and non-judgmental, it works. But for me, when I started doing it, I
thought I’m speaking to people in the community that I live in, I’m speaking to high school
students that there’s a really good chance that I’m going to see them out in the community, and
how are they going to react? Are they going to go, “There’s the AIDS guy.” That was always
what I had feared. I also feared that they’d ask questions to get a laugh or try to embarrass us. I
learned really fast that they ask questions that are really good questions because they need and
they want the information. So, that was an eye-opener because in the years that I’ve been doing
this, there’s been one time that they asked a question that was like, okay, and it was when they
had to write down the questions, so they weren’t accountable for it. And in hindsight, it was kind
of a question that myself and the other presenter didn’t even know the answer to, so were they
wondering what this really was or were they trying to be funny? We just presented it as, hey, you
know what, we’re not sure about this either. They asked what is a dirty sanchez, and it’s like, it
sounds like a drink to us but we don’t really know. It turns out that yeah, it is a drink, but it also
means basically rimming, so kind of along the lines of that, so it’s like, okay, we didn’t know,
we don’t know if they knew what it meant or not or if they were just trying to get a laugh. But
that’s the only time it ever happened. And we kind of had the same attitude, well, they may want
to know what it is, they may want to ask it, right?

With regards to the response I get in public, it’s always been really good. Like, when I run into a
student outside of the classroom, and I’ve run into them shopping, and I’ll be at the counter
going to buy something – like, I was at the Gap or Banana Republic, and the cashier, he kind of
looked up, and goes, “Hey, you presented at our school.” And then there’s a pause where it’s like
I’m not going to say what the presentation was because there was a lot of people around, which
is really cool. But they’re like, “Thank you, that was really, really good.” And it’s happened





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probably at least a dozen times where that moment of, “Oh, you presented at our school, and
thank you, that was great.” So, the response has been encouraging, and even in the classrooms,
you know that they want this information, and they need it presented in a way that’s just here it is
– we’re not being preachy, we’re not being judgmental, we’re just telling you information. I
always say, look, this information that we’re giving you, we’re giving it to you because it’s
going to help you make better decisions regarding your own personal health. It’s also going to
allow you to have better conversations with your partner or partners, so that you can decide
whether or not an activity is something you want to engage in or not, and if you do, what kind of
precautions you’re going to take. And also, will help you if you’ve engaged in an activity that
you think may be risky, help you navigate your way as to what to do. You know, if you think
that you may need to get testing or even if you’re not sure what your partner’s status is, so it’s
really just empowering you guys with information. So, that’s what we’re here for.

And I think it works in a way that the students take it that way – we’re not being “you shouldn’t
do this” or “you should…” It’s like, hey, we’re human, and sometimes we do things that we
know we probably shouldn’t have, but we’re human, so now how do you deal with this? It's
okay, and a lot of these activities are okay to do, don’t be afraid of them. Just know if you are
going to participate in them, what are the risks and what are the precautions you need to take?
Like I say, for me, it’s probably the thing that I am most proud of. You know, speaking in other
areas is great, but knowing that potentially with youth you can make an impact that’s positive for
them… And I come in as kind of this old guy, but I think that when I do talk to them, I always
start off with, hey, I first learned about this when I was in grade twelve sitting in the hallway of a
school just like yours, and usually it’s like the school just down the street from you guys, so it’s
not that different.

BK: That’s great. That’s a fantastic role to be in.

AH: It kind of is, and it’s something that – how are you doing for time? [Laughs]

BK: I’m good, I’m just making sure that we’re running still. Don’t worry about that.

AH: Okay. So, one of the things I often say is we need to do talks about the positives of being
positive, because I know so many people that through their journey with HIV have gone from
situations that really were not the best, to now, they’re able to help other individuals who maybe
were in similar situations, navigate their way to a better life or better situations regarding their
health, or even emotional and physical situations. People that are now speaking on the world
stage representing us who are living with HIV that you would have never expected that that’s
where their journey was going to take them when you look at how they got involved. And so, for
a lot of people, their HIV diagnosis in some ways has opened doors to opportunities that would
never have been possible had they not been diagnosed with HIV, and in a lot of cases, it’s
probably saved people’s lives as well. So, it’s funny when you think about something that has a
lot of negative associations around it – like HIV is a horrible, scary disease, and yet, the people
who are living with it, how we’ve been able to transform our lives is pretty amazing.






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BK: Absolutely. You were talking about the challenge of taking up a public-facing role as
somebody who’s HIV positive. I imagine that even when you first got involved with PWA, just
walking into the building must have been a challenge.

AH: Yeah, and gosh, that was a long time ago, because again, there’s a recognition that comes
with it. It’s like, okay, I have to acknowledge that this is who I am and this is what I’m dealing
with, and it’s not – it sounds awful but somebody who is coming out as gay and is going to the
club for the first time, it’s a scary feeling, right, but it’s also an exciting feeling because it’s
usually something that you know is going to be fun and you’re going to be happy and it’s usually
going to be a pretty good experience. When you walk into something like Positive Living, or at
the time PWA or any of the other ASOs or AIDS service organizations, it’s scarier, because
you’re coming at it through a different lens. Like, this is not, oh, I’m going in here because this is
going to be a happy place and it’s going to be fun. This is my life and I need help, or I need
something that is very vulnerable right now, and you don’t know who is going to greet you on
the other side and how you’re going to be greeted. And that is very, very scary. Like,
everybody’s journey is different. For me, I came from kind of average working person, like I had
a job working in retail, I came from a sports background – you know, it maybe wasn’t the
average person that maybe I was envisioning using these facilities. In my mind, I was thinking it
may be a lot of homeless people or people who had drug addictions, and how do I fit into this
community, right? Like, how do I go in to access these services where this is a very foreign
world to me. And it was scary, but then when I went in, it’s like I realize that there were a lot of
people that were very similar to me as well, but you know, you have to put yourself out there and
be vulnerable to find that information out. And when you’re dealing with so many other things,
it’s not easy. I’m good.

BK: Kind of along the same lines of that getting over the fear of entering an HIV positive space,
what did the stigma look like at the time when you were diagnosed back in the ‘90s? Did you
experience a lot of that?

AH: Um… Well, the beauty of it in a sense is you could hide it, right? If you could hide it, then
you could avoid a lot of it. Again, I went to work, I did my job. Not too many people asked
questions, and I’d always find ways to take my medications where most of the time nobody
knew what I was doing, so in that aspect, not so much. Friends and that, you know, we were all
kind of in the same boat, knowing it could be any one of us that would have to deal with it, so
there wasn’t too much stigma in that aspect. I’m trying to think back if there were any times that
I really suffered any major stigma – if I did, I just kind of walked away. If somebody didn’t want
to deal with me because of it, why am I going to waste my time? I’d just – okay, fine. Well
actually, there you go, right there. [Laughs] So, thank you for reminding me.

It was probably within a year after being diagnosed, I got a call from my dentist’s office that, oh,
you have to come in for your cleaning. And I was like, okay. And I said well just so you know –
and again, really new being diagnosed, not really given any guidance how to handle situations
like this, not really knowing what I should do – on the phone, I’m talking to my hygienist who
I’d been going to for years – “Well, just to let you know, I’m HIV positive.” And it’s like, “Oh,
okay, well I’m going to talk to the doctor, and we’ll get back to you.” And within fifteen minutes
or so, my doctor, dentist, whatever, who I’d been seeing since I was seven said they couldn’t see





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me anymore. And I’m like thinking this is 1991, ’92 now, we know enough about HIV that we
know if you properly sterilize your equipment and that, there’s not a risk – you should be
following these procedures anyways, it’s actually illegal for you to not treat me. Why are you
saying this, right? But in my head, I was just saying, you know what, if you don’t want me there,
I don’t want to be there. I’ll find another dentist. So, I went to my doctor, said what happened,
and he said, okay, “Well, I do have a list of some dentists that are comfortable treating people
with HIV, so we’ll send you to one of those,” which is what I did. Again, could I have stood up
more? I probably could have, but did I want to? Not really. I had enough that I was dealing with
at the time that I didn’t want to deal with it, you know. So, it was kind of pick your battles sort of
thing. Like really, what point would have been made if I said, no, you have to treat me? Well,
how would they have treated me? And I didn’t know enough to be that confident to say that.
That was the first real, okay, this is what it’s like. Other than that, I don’t know that I can
pinpoint many other times that it was that obvious.

BK: And within the medical field, you didn’t encounter much of that outside of the dentist.

AH: You know what, I would say – and I do say this often – I say I was very, very fortunate.
And I tell this story when I’m talking to the students, with the medical disciplines at UBC, is that
I have been very fortunate that when I’ve gone to the hospital for care, and it’s only been two or
three times that I’ve gone for an emergency – one, the first time I went is when I had a really bad
flu, like I was really sick. So, we went to the emergency and you do the check-in and they ask,
“Is there anything we need to know?” or whatever. As soon as I say I’m HIV positive – it’s like,
that’s really hard to say because you think I have to say this but how are they going to react to it?
And I’ve been really fortunate that when I have said it, it’s like, “Okay, what medications are
you on?” It’s never been a big deal. But in this situation, it was like okay, what kind of
medications are you on, and then I remember him clearly saying, “Okay, we are going to get you
a bed right away because you are positive and you have a flu, we don’t want to take any chances.
We want to get you into care as soon as possible.” And it was like, okay, thank you. It was
almost like I got put to the front of the line sort of thing, which was almost opposite to what I
expected, and it was a nice feeling. And the other times that I’ve gone in, it’s kind of been the
same thing. “Do you have any pre-existing conditions or anything?” And as soon as I say I’m
HIV positive, it’s like, what kinds of medications are on? It’s like wow, but that’s how it should
be, right? And the other thing I say is why are you going to treat somebody who says they’re
HIV positive any different than somebody who doesn’t say they’re HIV positive? Isn’t it better
you know what somebody’s status is than not know, because if they don’t know they’re positive,
you don’t know they’re positive, why are you going to be less cautious? It just doesn’t make
sense to me. Like, if you know what somebody’s status is, okay, that’s great – you be aware of it,
but you follow the same precautions.

Got another story for you – I’ve got lots of stories. So, a few years ago – it’s probably closer to
six or eight years ago now – a friend and I went for a trip down to Mexico, and we went and did
a ziplining adventure, which was really fun – it was kind of cool. One of the things on the
adventure we had to do is we had to climb up this rope ladder that was like fifty feet in air, and
the platform was like five by four. So, this tiny little platform that they hook up to the next thing
you zip across. So, as I’m climbing up the ladder, my friend thought it would be really funny to
shake the ladder on me, and it kind of was, because I was like ah! Well, when I got to the top and





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I got on the platform, the guy looked at me and said, “Oh, you’ve cut yourself. You’re bleeding.
Your leg is bleeding.” And I look down, there’s blood running down my leg. He goes, “Let me
bandage that up for you.” And I’m like, okay, what do I say to him? I’m thinking, do I tell him
I’m positive? I’m in another country, I don’t know this person, I don’t know what their rules are
or what their beliefs are or what their education is – all these things are going through my mind
and I’m thinking is he going to push me off the platform? All these things – how is going to deal
with this? Is going to freak out? And all I said was, “Okay, you’re going to follow proper first
aid procedures, right?” And he said, “Yup, I always do. I’ll put my gloves on, I’ll sterilize the
area, bandage you up, and you’ll be good to go.” And that was all that was said and it kind of
was all that needed to be said. It wasn’t a big deal, he didn’t ask, well, why? Is there anything I
should be aware of? It was like, nope, I’m just going to follow – what is it, standard care
procedure? There’s a term for it, I can’t remember what it is right now. And it was fine. It was a
really eye-opening experience because I thought, oh, see, you never know when you might have
to disclose what your status is, and you have no idea how somebody’s going to react. I was
really, really lucky. In most cases, I’ve been very fortunate, because I’ve heard stories that
haven’t been as good. I’ve heard stories from people who have had very negative experiences, so
I look at my situation and I think, boy, you know, you’ve been very lucky – you’ve been really,
really fortunate that you haven’t had to deal with these really negative aspects of it.

BK: Do you have any recollections about how the government was responding in the early days?
And if not, that’s totally fine.

AH: Well, in the early days, I couldn’t honestly say as much. I know there was a lot of – and not
just with our government, it was, you know, North America. It really was that we had to fight,
and I say we as a collective group had to fight for survival – as simple as that, right? I think that
had the individuals and the groups not come out the way they did, it would be a very, very
different story about where the epidemic is today. For me, again, I’ve overall been pretty lucky,
pretty fortunate. Where some of the challenges have come into place is like, you know, not
having the procedures for my toenails covered. Also, just the battle of having to get the coverage
for the surgery for the removal of the fat in the neck. That was the doctor writing a lot of letters
explaining why I was having a lot of negative health effects – I mean, mobility in my neck,
headaches, and it was really challenging. There’s a cosmetic aspect to it, but when it comes
down to it, how is it really causing a challenge with the physical health? The cosmetic part is –
well, we haven’t even talked about how this whole thing has affected the mental health aspect of
it, and that’s a whole other gamut. But again, and I guess I kind of always try to look at things
from both sides, and you understand that the government doesn’t want to be putting out money
for every little request, but there’s also a line between, hey, this is not anything I have any
control over, it’s a direct side effect of the medications I’m on. And so, why can you not do
something that is going to make life a little easier, a little better?

Those kind of things where you hear – and it’s not just myself, other people that have to deal
with this and the challenges and the hoops that they have to jump through. And again, a lot of us
are on very limited incomes, and so having to pay for anything extra out of pocket is almost
impossible, and especially now even more so than even ten years ago. Like, I know now every
day is like, well, gosh, I’m not making any more money and I don’t have the opportunity to
make any more money – that’s a challenge in that I always consider myself very fortunate that I





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worked for a company that I’m fortunate enough to have the healthcare that I do. That being
said, I don’t have the opportunity to make any more money outside of that that can make life a
little easier, so there’s advantages and definite disadvantages to it.

BK: Clearly, the cost of living has changed a little bit in the last twenty-five years.

AH: Yes, and I’m very fortunate, I was lucky enough to get a place when they were affordable in
the ‘80s, but I can’t afford to move, so I’m basically locked in where I am, because the cost of
moving is too expensive, the cost of buying and selling is too expensive, so even if I were to sell,
I couldn’t buy something for what I have now. I’m lucky enough that I don’t have a mortgage,
but that being said, not having a mortgage, I still don’t really have enough money to get by with
all the expenses that I have and living, so what do you do? It’s a challenge. Yeah.

BK: I’m just looking through other questions here, but certainly if there’s other aspects of your
story that you want to share, then…

AH: Well, I’ll talk about the mental health one too, but I always have a harder time with that.

BK: Do you want to talk about that now?

AH: Well, we can, sure. Like, I kind of have a way of putting it in a nutshell that doesn’t really –
like it’s a disservice but it really, we all have days where you think oh god, I don’t want to play
this game anymore. And even thoughts of suicide are very realistic for everyone – there’s time
where it’s like I don’t want to play this game. But where you have the real, real thoughts of I
can’t deal with this anymore, for people who are living with long-term chronic health conditions,
that’s far more realistic. It’s like, oh my god, another day of this. I have to take pills again or I
have to do more pills, or I have to – I don’t want to play this game anymore. It’s challenging.
You see people, your friends, that have passed away, and it’s like, am I going to be next, you
know? How long can I play this game, sort of thing. But for myself, and there have been some
really tough times, I’ve always kind of said to myself, you know what, tomorrow is another day.
It may be a good day, it may be a bad day, but it’s a new day. And when I look back at what I’ve
been able to do in the last twenty-seven years, I really wouldn’t have wanted to miss any of it.
That being said, there are days when it’s like, oh my god, no. But it’s not ever been an ongoing
stretch where it’s like this is really bad and I don’t know if I can see my way out of this. So yeah,
I think that like I say, for me it’s always been just telling myself, hey, tomorrow’s another day,
and if I can get out of bed today, it’s a good day. If I can get out of bed and if I get out of the
house, it’s an even better day.

And again, I’m very fortunate that I have some good friends that I do a lot of stuff with. I love
kayaking, so if we can get out on the water, that is my happy place. I coach, so doing that twice a
week, I love doing it. It’s a challenge getting there, but once I’m there, I have so much fun and
the group has so much fun. So, those kind of things are – like I’m glad I have this going on in my
life. I always say I coach in an environment where everybody else is coaching, they get paid for
it. I don’t because I can’t, so I do it as a volunteer, I do it because it’s keeping me healthy, it’s
keeping me sane. Any time I can do speaking engagements or something like that, I get nervous,
but it’s also very exciting, it’s very rewarding. And I do not only with HIV, I do training where I





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train our officials, I train our beginner coaches, I just did a clinic on the weekend with another
one of our facilitators, and it was really great because it’s like, hey, I made it through a weekend
doing this. I’m exhausted, I can start to feel the cankers already, but it’s like, you need a couple
days of rest, you’ll be okay. But those are the kinds of things for me that keep me going. If I
didn’t have those things, if I didn’t have something to keep me going, then that would be really,
really challenging, because it is, it can be very, very isolating as well. Facebook is very
misleading. People are like, oh, you’re out kayaking every day. It’s like, no I’m not every day –
once or twice a month we get out kayaking, and that’s awesome, and that’s more than a lot of
people do, but it’s not every day. And so, you don’t see the days when I’m lying on the couch
and watching TV because I have no energy to do anything else, and that’s more often than not
what the case is, right? And I’m pretty good, if I need to do something I can get up and go, but
there’s a point where it’s like, oh no, I’ve done too much and now it doesn’t matter what I’m
supposed to be doing tomorrow. I can’t do anything, right, and that’s hard. I have a hard time
because I look at my friends who are able to do so much more and I think, yeah, I wish I could
do that much, but I can’t. And I find that very frustrating, because I used to be able to.

BK: I think that’s an important thing for us to capture, because we know that after 1996, it’s not
like all these problems are solved. There are still ongoing issues for long-term survivors.

AH: Yeah, and I think that sometimes gets lost, you know, because there is this message that it’s
a livable disease now, which is great. And if you were diagnosed later on and you can now just
take one or two pills a day, it’s a livable disease, you’re not going to die most likely if you’re
taking your medications, but it has a huge impact on your life. And that bothers me when I hear
that message and I’m like, yes, it’s livable, but it’s not easy, and don’t mistake the two. And I
think we do that too often. It’s like, yes, it’s livable, but it is not easy. And it’s easier than it was
but it’s still not easy. And for every individual, that’s their life, that’s their world that they’re
dealing with, so whatever’s going on with their world makes it even more challenging, or it
makes it better depending on what they have going on. But we can’t compare one person to
another person and say, oh well, all you have to do is do this now and it will be great. Yeah, it
may work for you that way, but it may not work for somebody else that way. It may be harder for
them – they may be able to do a lot still but they can’t do the same. I feel sometimes really
guilty, myself, that I’m able to do so much but I’m also not able to do a lot, and I get frustrated
with that, and I get frustrated when I think people think that I can do more than I can.

BK: How has your perspective on HIV changed over the years? Going back to 1982 and being
told we’re going to die from this to diagnosis and now to the present, how has this all changed
over time?

AH: Um, interesting. Well, here’s the thing. So, when I was first diagnosed, and for many years
after that, I really couldn’t look very far down the road. It was three months down the road. I
always say I was looking three months down the road and it wasn’t what I’d be doing, it was
would I be alive, and that was really, really scary. I say three months and then it kind of dawned
on me why I say three months is because every three months you went in for bloodwork, and it’s
like, okay, what are you going to find out this time? How long do you have now? And so, it was
really hard to plan anything, because, oh yeah – hey, next summer, do you want to go down to
California or do you want to do – it’s like sure… Well, actually great example, because it was





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probably in ’94, ’95 that I started diving again, and the adults that I was diving with were saying,
“Hey, 1998, World Master Games are in Portland. Do you want to compete?” And everybody,
“Oh yeah, let’s train for that. That will be awesome. Are you going? Do you want to do it?” And
I’m like, sure, yeah, and in my head, I’m thinking I’m not going to be alive. There was no way
that I thought I would make it to 1998 – no way. And I did, and I dove in the competition and I
got medals in the competition, and it was like, wow, that was pretty big. But I still couldn’t look
– I still have a hard time looking more than a year down the road. You know, I can look much
easier a few months down the road, but a year or anything further is still really, really hard. I
don’t know why, but it still just seems like there’s so much that can happen in a year, right? And
things are going pretty well, but I always think, I never know. What happens if my body all of a
sudden starts rejecting these things? You’ve been on these pills for how long?

I actually last year had to switch my medications that I’ve been taking for ten years or
something, and it’s like, that’s really scary. If you’re really comfortable with something, and I
get that people are still taking five or six pills a day twice a day, because hey, this works, why do
I want to change, right? But I was having some issues that, you know, where it’s almost like
kidney stones and gall stones and that – I’m trying to remember if it was the medications that
were crystallizing, so you get the feeling that’s almost like kidney stones, and apparently that
wasn’t uncommon with the medications. It’s like, you can switch to this one and you won’t have
that issue anymore. And the first time that option I had to do that, it was like, no, let’s just see if
it’s okay, and went for a year or so without having the issue come up and then it came up. It’s
like, okay, it’s time to change. But it’s just scary because you think what if I change medications
and this one doesn’t work well? What do I do, because now I may not be able to go back to that
one even though it’s causing some problems. So, there’s that whole factor of getting past that,
and yeah. I don’t know where I was going with this. [Laughs]

BK: So, it sounds like it doesn’t sound like a death sentence anymore but there’s still a lot of
uncertainty.

AH: Oh gosh, yeah. It’s not a death sentence in the same way, because now people say you’re
not going to die from HIV, you’ll die from something else, which… I’m almost afraid to say this
but it’s almost like that would be – not disappointing but it’s like, oh my god, I’ve been living
with this for so long that – and I’m just saying this in my head right now. It’s like, if I die from
something else, then what happened, right? [Laughs] I don’t know – that thought, I hadn’t really
processed it before. Yeah, I guess I’ve kind of always been prepared to die from that unless it
was something like a plane crash or something.

BK: Old age.

AH: Yeah.

BK: A real possibility for a lot of folks…

AH: It is, yeah. But again, when you talk to long-term survivors, it’s like, yes, but are we at an
accelerating rate because we’re dealing with certain things that seem to be coming up earlier, and
there was a time where – and I say a time – there was a period where there was a lot of people





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that I knew, and I’d say probably half a dozen people, that died within a year and a half of heart
attacks – they just dropped dead of heart attacks. These were people that were very active in the
community, and it was kind of like, wow, it is just a reality of what’s going to happen that
because our bodies have been dealing with so much for so long, what the medications have done,
that I’ll just keel over from a heart attack. Maybe, but what do you do about it? I mean, just be as
healthy as you can, but it was very sobering because it was just like a cluster. I haven’t heard too
much about it lately, but it was – it hit a nerve.

BK: Another large-scale question, how do you think the epidemic changed the gay community?

AH: Well… In a nutshell, it probably made the gay community stronger. It gave them a voice
that was not there before, and I think there was a different kind of respect that was earned from
it. Yeah, because we now were fighting for something that was bigger than just the gay
community, it was everyone. It’s like, everyone that could and can be affected by this needs help
and we are a voice for those people, because they a lot of times had even more stigma around it
in that if they weren’t gay, they were kind of identified as being gay in some way, because they
had HIV. Even though it may have had nothing to do with it, it was just total misunderstanding
and just labelling, and fear – and fear. I say to people a lot of the times, I think for the generation
that didn’t live through the epidemic, the best comparison I can give you is a couple years ago
when we had the Ebola scare and how people reacted to that, because when you look at North
America and how anyone who all of a sudden had flu symptoms was automatically – there was a
fear that they had Ebola. And healthcare workers didn’t know how to respond – did they have to
wear, you know, full protective gear? Were these people needing to be quarantined? And there
was almost the assumption before any reasoning was there that everybody was infected, and that
went on for a couple months. And there was some very prominent people that lost their jobs
because they basically said, hey, I just have the flu, I don’t have Ebola, I don’t need to be
quarantined, but because they didn’t abide by the rule that they needed to be quarantined, they
lost their jobs. It was ridiculous, but it was all out of fear, and that lasted maybe six months and
then it kind of righted itself and calmed down. The HIV epidemic went on for over a decade like
that, and so you think about what that was like and how it was like living through that period for
so long for everyone – it was exhausting. I forget what the question was.

BK: I momentarily do as well.

AH: Because I have thought about a few other things now and I’m trying to figure out what they
were.

BK: You were talking about how the gay community stood up for not just the gay community,
but for anybody who had HIV.

AH: Yeah, and then I kind of went on that comparison. Again, because they needed a voice, they
needed somebody to stand up and say, hey, we need help and we need you to look past all your
fears and your discriminations and just look at this as a disease and not the individuals, right?
And basically help everybody and not be afraid in the same way, because I think so much of it –
and in fairness, I would be the same way, like I was the same. You’re concerned about your own
personal safety, so because somebody is afraid for their life and they don’t want to put





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themselves at an unknown risk, why are we judging them? When you’re able to give them the
education and they still stand behind their fears, that’s when you have the problem. It’s kind of
the world we live in right now – yeah.

BK: Do you remember activism happening in Vancouver at all?

AH: Yes and no, actually. You ask these questions and I kind of forget and then it’s like, oh
yeah, because there was the AIDS Walk, which used to be a huge thing. And I remember
walking in it for the first ten years or so, maybe, and that was a big event, and then it kind of has
lost its way a bit. And even for myself, it’s funny how it ended up out of, not planning or
anything, but I was away for quite a few of them, and then coming back, they weren’t the same,
so it was kind of like, well, I have other things that I can or should be doing that weekend. Do I
do that? Why do I want to do that when there’s not that many people there and I need to be doing
something else? And so, I feel guilty that I’m not participating in the way I used to. It’s not the
same – I’m not the only one. But then part of me is like, so if that’s the case, what do we do to
change it so that we can do something that is going to have the same effect, or does it need to
have the same effect? It’s hard to say because we’ve come so far, how do you address this in the
same capacity when there’s not the same needs, right? I don’t know. I’m just throwing it out
there, because things change. And so, we’ve changed for the better in a lot of ways and we need
to recognize that, but there’s still so much that needs to be done and can be done, and if you start
to lose the means to do that, then the people that need that help end up falling back into the same
place they were before, and it’s not good.

BK: Kind of along those lines, what advice do you have as a long-term survivor for younger
generations out there who didn’t live through this?

AH: Oh my. [Long pause] Good question, because – can I touch on…? The other thing I was
going to say, I know for myself, I think I talked earlier about some of the walls that have been
put up and those walls have been really hard to take down. I mean, they’re there for different
reasons, but I know in talking to other people, I know for myself, even being in a relationship
with somebody again is very, very challenging, right? And I’ve talked to other people that are in
the same position as myself. There’s some people who it’s never bothered them – yeah, they’re
HIV positive but they’re able to still either be in relationships or even just hook up with other
people, and it’s not a challenge, it’s not an issue. And yet, there’s a group – well, I shouldn’t say
group, but there are individuals like myself who it’s been very, very challenging. And when I’ve
talked to people about it, it’s like even the thought of navigating our way through this is almost
too daunting. It’s like there’s comfort in being in where we are now and thinking, well, do I need
to change my life that much? Do I need to be in a relationship? It would be nice, but I know a lot
of people who aren’t positive, who aren’t gay, who aren’t in relationships and they’re in the same
position, so am I any different? Maybe not, and is that bad? No, it just means everybody’s a little
different, right? We all kind of deal with what we need, what works best for us. But I know that
there have been big walls put up over that, and when they’re so strong, it’s really hard to take
them down – maybe one day.

BK: That’s still something that you’re obviously currently finding challenging, but do you think
that’s gotten a little bit easier now that HIV is a little bit less scary?





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AH: Well, you know what, that’s the truth. Is it easier? No. Is HIV the issue? Probably not. It’s a
factor and in some ways it can be an excuse to keep the walls up when there’s other things that
are really the challenges that have to be addressed. And I think that’s where – like, I know I’m
not the only one that’s in that position. I think that’s sometimes where it’s like, okay, so what
kinds of resources are there for individuals that find themselves in that position and want to
navigate a way around it? We’ve had some kind of programs to help people who are positive
connect with others and re-engage in being sexually active or intimate, but there’s not really
anything that’s either ongoing – or maybe there is and I don’t know about it. [Laughs]

BK: I can’t think of anything off the top of my head along those lines.

AH: No, and I think in some ways, I almost think it was something that needed to be available
earlier, because now it seems like everybody’s like, yeah, it’s a livable disease. You know, so
there’s not any people who are like that – well, no, there are a lot of people that are still – there’s
a lot of people that are living with HIV that we don’t even know. They’re just living their lives
and not connected or engaged into any community of any sort, and that’s okay. Do they need to
be? I don’t know. It’s nice that it’s there if they do need it, but it’s just life.

BK: It is interesting to think about somebody who’s diagnosed today and whether they feel like
they need those types of resources, because they can just go onto really effective medication
right away and become undetectable – a lot of them at least.

AH: Or even taking PrEP or something. It’s like, hey, I don’t have to worry about it anymore.
Yeah, it’s different. So, your question again was…?

BK: For younger generations, if you have any advice for them as a long-term survivor. And if
that’s too obtuse, if you have any advice for people who are newly diagnosed?

AH: For somebody who’s newly diagnosed… [Long pause] Wow. It’s a different world now
than it was, and so we were just saying, if somebody is newly diagnosed, it almost doesn’t have
that much impact on their lives, right? But emotionally, it can be very challenging. And it is just
every day, you take it every day, and there’s a point where it’s not necessarily at the forefront of
your life. I mean, even with myself, there’s moments like this where it’s definitely right at the
front, and there’s times where it can be right at the front and totally within my control, but more
often than not, it’s not the primary focus in my everyday life, and that’s great, because it doesn’t
need to be. You know, we’ve come so far and we have a ways to go. There’s always progress
being made, right, but when we look back to what we started with and how bad it was, you
know, the reality of where we are today is amazing. And the fact that if you’re fortunate enough
to be able to access the treatment and support, your life isn’t really going to be impacted that
much by it is pretty fantastic, because again, we’re so fortunate that we live where we live and
we have access to the medication and the treatment and the care and the support that we have
here, because there’s so many people that don’t. And so, their journeys are very, very different,
and their challenges are so much more. But again, they’re their challenges, it’s not your
challenge or my challenge.






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26

But yeah, I said it before, I’ll say it again, there are positives to being positive, and you have to
look at what those are as well. There’s so much in my life that’s pretty cool and pretty amazing
because of this and I wouldn’t be where I am today if I wasn’t positive. It would be interesting if
I could see a parallel universe where I would have been. But I often say, you know, some of the
careers that I wanted to go into is that I wanted to be a travel agent, I wanted to be a teacher, and
I wanted to architect. Well, architect, not really, but I’ve travelled all over the world, which is
amazing, and I, in some ways, am a teacher. I go into classrooms and I talk to students about
HIV, so I’m educating, and that would have never been possible – I probably would have never
gone down that road if it hadn’t been for this. In a funny way, it’s given me opportunities that I
was aiming for anyways.

BK: I think that’s kind of it for my formal questions, but we always like to leave you some space
at the end just to add anything that we might not have asked about or expand on anything that
you wanted to talk about. So, you’re welcome to take a moment to think about that.

AH: Okay, I think I’ve expanded on… [Laughs]

BK: I think we’ve done pretty well.

AH: Off the top of my head… Well, here’s a thing – okay, so as we talked about that individual
that infected me, because long and short, it was hard to say that, but that’s a reality because I
know exactly who it was. At this point, I don’t know whatever happened to him, and there’s
times where I kind of wonder and kind of care, and then there’s other times where I don’t,
because for me it was really hard to know that my belief was that this person knew exactly what
they were doing and there was an intent there. Again, it’s like, why? Where were you at? And
learning even more about it is probably where I feel that they were pretty newly infected as well,
because it hit me really hard really fast and it kind of stands to reason that if they were fairly
newly infected and not getting treatment, then they may have had a really high viral load, and it
would have just been an easier transmission. But that’s just kind of looking at the logistics of it.
The emotional aspect of it was devastating, and it was also where the walls went up even harder,
because it was really at a point where I was kind of starting to put the walls down a little bit, and
then wham. It’s like, okay, I’m not going to put myself in that position again because – here’s
another aspect that always drives me crazy is that there’s fear of somebody who’s HIV positive
that, oh, they’re going to infect somebody, they’re going to pass the virus onto somebody else.
And for the person being HIV positive, myself, my fear is what can I get from somebody else
that’s going to throw my whole system out of whack. And so, that’s part of the reason why I’m
very protective, because I don’t want to take the risk that I’m also now going to have to fight off
something that I don’t know how hard it’s going to affect me, and I don’t like being sick so I
don’t want to take that risk, right? That was kind of rambling. [Laughs] I don’t know if I started
with something, but I’ve lost my train of thought again, but there you go. Oh yeah, I think I
covered what I needed to. [Laughs]

BK: The other thing that obviously gets lost in a lot of those conversations around disclosure is
that people who are positive and on treatment, if you’re undetectable you’re not going to pass
virus on anyways at all.






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27

AH: No, but again, when I do the presentations in school, I always say that I’m very fortunate –
I’m on treatment, I’m undetectable, which means my risk of passing the virus on to somebody
else is pretty much non-existent. But that doesn’t mean that I don’t share my status with
somebody I’m going to be engaged with sexually, be intimate with, in part because it’s sort of
that, you know what, at this stage in the game, if I’m going to be that intimate with somebody,
why am I not talking about that at least? And it says, hey, this is what we know, and if you don’t
want to be engaged with me in those activities, that’s fine. I’m not going to – I would rather have
that conversation beforehand than have to do anything after the fact when there may be some
repercussions to it. As much as undetectable, you know, U=U, undetectable means
untransmittable, sounds great, it’s just a slogan in a way too, because there’s so much more that
is affected by being positive and not engaging in those conversations if you’re with somebody. If
you’re with somebody who really understands and knows it, then it’s maybe not as much of an
issue as if you’re with someone who doesn’t. I always look at – I don’t even think
untransmittable is a real word, so I wonder about the logistics. [Laughs]

BK: It is now.

AH: Well, we kind of made it a word, but it doesn’t come up in spell-check as right, so I
wondered about that one day. I was like, is this real? Is this even really a word and is it real? I
think it’s intransmittable.

BK: But not in that coined phrase.

AH: Exactly. It’s kind of like, we’re going to make this work for us, and that’s great, because it
is – you know what, if nothing else, it gets the message out there where it can open up a dialogue
again. So again, so any way that you can kind of take away some of the fear behind HIV is great.
To be able to say, hey, I’m on treatment and basically the virus is suppressed so much that I can’t
pass it on to anybody, so there’s not a lot of risk on that thing.

BK: It helps to combat some of the stigma around it.

AH: It does, but you know what, and this is what I say to people too, it’s kind of the same thing
as what they tell you about learning a language or learning anything, really – it’s not going to
always happen the first time you hear something, right? You’re going to have to hear it or do it
or try it fifteen, twenty, thirty times before it actually sinks in, and then it’s like, oh okay, now I
get it, now this works. So, the first time somebody says I’m untransmittable, that may mean
nothing to the person across from them. But it may when they hear it from somebody else and
then they hear it from somebody else, but the first time, if they’re not familiar with what that
means, it’s not going to mean anything to them. And you have to understand and respect that.
You’ve just given a whole new information that still is a lot to process. Like, I still don’t
understand what you mean by your virus is suppressed – you still have it, right? How do you
explain that, yeah, but you’re not a risk.

BK: They are complicated medical phenomena, which makes it challenging to have
conversations with everyday people.






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AH: For sure, and the thing is, again, allow it to open up the conversation. “Okay, and when
were you last tested?” Because if I say I’m undetectable but I wasn’t tested for six, eight months,
well then how valid is that if I haven’t been taking my medications, or if I’ve been really sick for
the last three months or whatever? What other factors go into it? So, I don’t want to be the face
of the person who’s bashing the U=U thing, because that’s not my intent, because I think it’s
great, but I think there’s a reality of just because you say it doesn’t mean people are going to
accept it. And you have to allow for that as well. It’s like what I just said, it may take somebody
to hear it thirty times before they really get it and go, okay, now I’m okay with this. And don’t
beat them up because they didn’t say that the first time you told them.

BK: Anything else?

AH: I don’t think so. [Laughs]

BK: We’ve covered a lot of ground.

AH: How long did we go?

BK: It’s been a couple hours, which is great. But if you don’t have anything else to add…

AH: I don’t think so.

BK: … I’ll just say thank you again.

AH: Oh, it’s been a pleasure.

BK: We’re really grateful that you took the time to share all of this with us. And otherwise, I’m
just going to stop the recording.

AH: Sure.