Interview with Tony de Jong

18-05-17-TD.docx




“HIV in My Day,” Tony de Jong (May 17, 2018)

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“HIV in My Day” – Interview 30

May 17, 2018
Interviewee: Tony de Jong (TD); Interviewer: Ben Klassen (BK)

Ben Klassen: Thanks so much for being here and sharing your story with us. We are really
looking forward to hearing your story. When did you get involved in the gay community or start
engaging in gay life, so to speak?

Tony de Jong: I think I started in the gay community, at least the social aspect of that, when I
was probably in my twenties. Before that, I didn’t engage in anything – it was in my twenties.

BK: When would that have been roughly?

TD: I think in those days, we are talking almost fifty years ago or forty years ago, I would have
been going to clubs or things of that nature and I had a circle of friends that I hung out with. That
type of thing. That is what my community looked like at that time in the social aspect. I had
another life, but the gay lifestyle at that time was secret, if you want to call it that. I didn’t really
let anybody know until even later in my life, but that is kind of how.

BK: So, it was subterranean, slightly underground.

TD: Yeah, it was your weekend type of thing. You worked during the day, you did your family
type of thing, you did your social aspect with your straight friends if you want to call it that, so
the gay lifestyle was kind of underneath that, so I didn’t want anyone to know for the longest
time. I dated a girl for a while, being gay at the time, and just because the social aspect of that.
So, it was different then, and then I didn’t want to be gay anymore, and I come from a religious
background, so I thought okay, I am going to change. There was an organization called – there
was a Homosexuals Anonymous out of Calgary, so every Tuesday I would drive to Calgary and I
would come back and I would go with someone from Edmonton at the time. And that was a total
disaster, but then I still kept that trying to see how things could go. And I went to the state of
Washington, I went to a university that had this HA kind of thing – it was a big conference. And
there was an individual by the name of Colin Cook, who was the head of this organization, he
formulated the HA, the philosophy, I guess you want to call it that, and he had an office in
Redding, Pennsylvania. So, I went to Redding to do therapy on all that, to change my orientation.
That was a total disaster, that made me – after that, I decided that I was going to come out when I
came back to Alberta, I decided that I was going to come totally out and live my life the way I
thought it should be lived. That is what happened.

BK: It had a different effect.

TD: It had the opposite effect. The thing of it was the therapy at the time was the strangest
therapy I have ever witnessed in my life. It was – as you had the group therapy and then you had
a one-on-one with him once a week, and this was costing me some money, too, to do this. So, he
would – he delved into my life type thing which is normal I guess, and one of the processes of
the therapy was to take your clothes off and as – or take an article of your clothing off and as that





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progressed, and then you would hug him and all this kind of stuff. And if you got an erection or
anything like that, he knew he had to work more on you, but it was more he got an erection, I
never did and that kind of thing. And it just got really weird and I quit and I believe one of the
guys in the group committed suicide over this whole thing and then it got really ugly. And then I
left, went back to Canada and then the whole thing collapsed and, I don’t know, there was an
investigation and all that kind of stuff. Be that as it may, I realized too, I was always told you
could change your orientation and I wanted to do that, so when I realized that, it made me more
committed to be who I was, not who I thought I should be. That is where that aspect kind of
happened, so it was different.

BK: When you came back and decided to come out, when roughly was that?

TD: I believe that was roughly in the mid-80’s, about the mid-80’s.

BK: And was HIV already something being talked about in Edmonton at that time?

TD: No, I really didn’t hear about it until the later part, maybe, and then it came out in a
vengence in the late ‘80s and early ‘90s, I think. I wasn’t practicing that much – it was, I never –
in my whole life up to today, I have had anal sex twice, so it never was an issue for me, and
unfortunately the second time is the time that it happened. So, be that as it may, I never worried
about it or anything. Then one day, I wasn’t sick, one day I decide hey, I am going to get myself
tested. At that time, I had a good relationship with my doctor, and he was a friend and so he said,
“Why don’t you do it?” So, I did it and it came back positive. It really shocked me because I had
no indication and I wasn’t heavily sexually active anyway, so that was weird. That was – and
then in those days, in 1991, when I was diagnosed, I didn’t know what to do. It was a hard thing,
because I knew one thing was that there was not much that could be done. So, I went to, he
referred me to a specialist at the University of Alberta – Dr. Shafran was his name, a great man.
And at that time, they said that the way I already had AIDS according to the levels that they went
by, but there was nothing in those days that they could do. There was AZT they were trying, and
so they tried that for a while, and then they tried interferon and that made me so sick, and I
actually got more sick from the drugs than I did, and nothing really worked. So, the prognosis
was six months to a year. So, at that time I had to tell my family, so I decided I would make
preparations for my death, so I got a burial plot type of thing, tombstone all that kind of stuff, but
I didn’t die.

So then what happened is that it was a suggestion of the social worker that was associated with
the doctor that I, to deal with the trauma of dying and all that that, I go to the AIDS Network in
Edmonton, and which I did and I soon became – I sat in the room with a bunch of people I didn’t
know. Actually, there was one guy there that I knew, but I found myself being involved with an
organization that I didn’t 100% agree with. I was – bless their hearts, they were trying to help
folks. I came from a Christian background and I knew there had to be more to this than just
talking about dying all the time and about dealing with your feelings and making pictures and
drawings, and like it just seemed so hopeless – there was a lot of hopelessness. I do understand
people that do not have an understanding that this was their support system and I understood that
but for me, when I became HIV, I decided to come and tell everybody that this is my life, right?
And so, it was a learning curve for my family, at that time – do we throw away the cup when we





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eat, and all that kind of stuff, and I don’t know, right? But there was a lot of – what do you call it
– naivete about the whole thing. That was the frustrating part, a growing experience for me and
my family. I started going with the AIDS Network, I was always going to these celebrations of
life things, and it was – it got so depressing that… And then what I noticed too, was that I was
alienated from my friends and family and now the AIDS network became my main body of thing
and that really bothered me that I was leaning toward that. So, I made a conscious decision to
quit and never attend another one of those things again, and I never did. I just said okay, I am
just going to live my life as I always lived.

And then I met someone who I didn’t know him when I met him but I met someone who is HIV
and at the time I didn’t know but he was in the last couple years of his life and so we became
friends and we ended up living together. And as he got sicker, I decided to just take care of him
and so that is what I did, and his family didn’t want to see that part of him, so I would always
make sure he was the best he could be whenever they came over to visit. I ended up having to
feed him and clean him when he soiled himself and bathe him, and that was very difficult. It was
good at first, as a friend and partner I felt it was my obligation to help him, but it was very, very
difficult. And then eventually, some women from my church community decided to come and
help and that was a real godsend and – I just want to back up a little bit because something just
came to mind on this whole thing. I found out who I got HIV from and I went to visit him one
day and I wasn’t angry with him but I wanted to tell him that it was okay, right? And I went to
see him and he lived in a small condo and I was heartbroken by the fact that he was all alone and
he came from a heavy religious background himself and they’ve kind of abandoned him, and so
that was hard. And I remember when he was in the hospital in the palliative care, I think his
sister came a couple times but I – that is when I realized that there was in my own community, in
my own Christian community, that there was such love, that people in my Christian community
would come and spend the night with him, all night and hold his hand and stuff like that. And
when he died , he couldn’t be – the funeral couldn’t be in his church because of his condition and
what he died from and so it was at a funeral home and the only people that really showed up
were the caregivers from my church, that is how I knew that I had a good support system.

Fast forward back to my partner, it was the same thing that my church really took an interest in
seeing that, they wanted to show what love was about – taking care of someone, even with
AIDS. When he passed away, I – my life kind of… I was retired, I was living in Edmonton, I
was doing things, but I don’t think I have ever resolved the gay issue and the HIV issue 100%.
And so, in about fifteen years ago I became addicted to crack cocaine and that just ruined my
life, that just – crack cocaine is worse than having HIV. And that brought me to the Lower
Mainland and I became involved in a community here, and I have been clean for twelve years. It
brought me to a different place of, where my health has improved drastically to the point where
there is no fear anymore, when I came – because I was on crack cocaine, of course I wasn’t
taking medication or anything of that nature, so my health had deteriorated drastically when I
came to the Lower Mainland, but since all of this, it has improved quite drastically. It is not
maybe politically correct to say this, but I feel that my lifestyle, even though I consider myself a
gay man, I am not a practicing one, in the sense that the sexual aspect of it isn’t there, but that is
okay for me, I am an older guy. Do I still love men? Yeah, I still love men, but it is in a different
– it is maybe hard for someone to understand, but it is different from what I experienced when I
was younger. And I believe my Christian faith is a large part of that, and so to tell you the truth, I





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am actually one of the happiest guys around today than I was before. That is kind of it in a
nutshell.

BK: Thank you for sharing all of that, and I think that that thread of your faith and Christianity, I
think it is a little bit different than a lot of the stories we have heard and that is really valuable for
us to hear. And I thought it was really interesting that so much of your support network was
through your religion, your Christian community, not through, say, an AIDS service
organization.

TD: To go back to the AIDS organization, there is a lot of good people, a lot of well-intentioned
stuff, but I felt that it, the – for me there had to be more than just waiting to die and drawing
pictures, and bless their hearts, whatever they did. And I am sure it is all good, but for me in my
mind there has to be more than this. I can’t just sit here and wait for the inevitable to happen, and
so because there is so much more to life, right? Some guys I know got their inheritance right
away or took a payout on their retirement and partied, and that wasn’t me. And I said I can’t do
that, I have no interest in doing that, I would just as soon wake up in the morning and start my
day or start my work or do whatever I can until I can’t physically do this anymore. To sit around
– and what happened was that some of my gay friends who aren’t HIV, as a group what we
found and what they told me was that they felt that they were alienated by people who had HIV.
We were all friends, what stopped that? Why did it stop? And it was because in those days you
would rather hang out with guys that had HIV in case you wanted to have sex or something, it
didn’t matter. Little did we know that it did matter, you shouldn’t be reinfecting yourself. But the
thing of it was is that that social aspect of it became weird, it just – and so I didn’t want to
alienate my friends that I had that were not HIV and I think that has now really changed. But in
the beginning of that whole AIDS thing in the ‘80s and ‘90s, that was a paramount thing. It was
segregation of men living with PWAs or whatever, it was that they were segregated and they had
their own little club, and they had their own little thing, and I don’t think that happens today. I
think it is more integrated back into the real society, but in those days it was very segregated, and
that I had trouble with and that is why I left.

BK: Was part of that polarization – was there fear around HIV positive people or stigma?

TD: I think it was easier for men with HIV to stick together because you had some kind of
confidence. In those days, there was a fear, my own family had fear, never mind people from the
street. In fact, I am a leader at a recovery home called [name] here and so I was telling my story
the other day and one guy stood up and said, “I heard you had AIDS and you shouldn’t be…”
So, there is still a stigma for a lot of people and I became aware of that the other day when I told
the guys my story the other day as one of their leaders. For the most part, it isn’t anymore but
there is still the odd one that has the stigma attached to it that feel differently – “You are lesser
than some of us,” right? So I think in the ‘80s and ‘90s it was really bad, so you didn’t really
want anybody to know ‘cause there was a stigma attached, but once I made that decision, that it
didn’t matter to me, then it was a lot easier to handle and I didn’t have to hide it anymore. And I
think with people in those AIDS organizations, in a group setting you didn’t have any fear of that
‘cause you were all the same, and so I understood that, but on the other hand I didn’t want to
admit in my own mind sometimes that I was one of them – that also I had to struggle with. Yeah,
it was difficult trying to weave through that whole time in my life.





“HIV in My Day,” Tony de Jong (May 17, 2018)

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BK: It sounds like it. You said the organization was the Edmonton AIDS Network. Were they
doing anything other than the support groups that you were aware of?

TD: I remember they had sessions when you got together and you talked. There was always,
when somebody died – in those days, somebody was dying every week so there was always
these memorials every Tuesday or Thursday – I can’t remember what day it was – that you got
together, you sat in a circle, and you honoured the ones that passed, and things of that nature.
And they had social activities. I think I went to one social and then I stopped. They did a lot of
social things, potlucks or whatever it was. I became – one thing I did do is I became involved
with a hospice that, I think it was called Pilgrims, and it was in Edmonton and it had people who
were dying of HIV there so I decided to volunteer and spend a little time there. There again, I
just, a lot of guys died alone, their life was hidden from their families, and when their families
found out that not only were they gay, they were HIV, a lot of them were abandoned. That
happened a lot in those days. I don’t think that happens too much now but in those days it
happened a lot. And I saw a lot of hurt there, but even though I was HIV, I was healthy and my
thought was, is to bring some joy to the last part of their lives, right? And I think a lot of these
guys lacked love. I think – and I can speak for myself, my whole life is trying to find love in all
the wrong places and never finding it. It was always a sexual thing, and so when you get to the
end of your life or when you know that you are dying, you don’t crave the sexual thing anymore,
used to crave the love thing, and I have noticed that in so many of the guys I met, and that was a
hurtful thing. That was sad to see. I was more sad than anything else. If I could bring a little of
that into it, I decided to do that and I did that for quite a while, and I lived outside of the box. I
lived outside of the organization of the AIDS thing ‘cause for me it was – I didn’t want to be pin
holed into whatever they had going ‘cause when I quit going to their stuff, then I knew that
maybe I would just have to do things on my own. For me that worked and for others it might not.

BK: It is amazing to step into what sounds like a caregiving role, not in the sense of feeding
someone, but in terms of providing emotional support, it is pretty amazing taking all of that on
when you were dealing with your own diagnosis and your own health concerns. Did you ever
have to balance those things, caregiving and your own health?

TD: It was a time – there was a doctor at the time that was my partner’s doctor, and I didn’t
realize what was happening but she did. She actually did a house call and told me that I had to
start getting somebody to take a day off and go somewhere else and do something else and
somebody else had to take care of him because I was burning out. I was getting angry and my
partner had developed dementia and started hallucinating, and it was very difficult. And it was a
learning curve for me, ‘cause if he said that there was somebody underneath the bed, and I said
there is nobody under the bed, we would get into this argument. And then I had to learn, the
doctor told me to never fight, just agree and go along with it and then I remember pretending to
take the person who was underneath the bed and throwing them out the door and then he was
good, instead of fighting him and saying there is nobody there. Once I started to do that, it
became a little bit easier, but I found myself burning out, and so I started to do that and again I
asked the ladies from my church and they came and sat with him and they baby sat him and
helped so I could take some time off.






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BK: That is what you did to avoid burning out. Did you stay involved – when you left that ASO,
did you still stay involved in the gay community?

TD: Yeah, I did.

BK: What did that involvement look like at the time?

TD: When I say gay community, it was still the night life with my friends – we would go out and
I would drink alcohol, and I stayed in connection with that. I was never one to go to many – I
think in those days there was a lot more gay social events and I had some trouble with that and
not always but at times ‘cause it turned into something I didn’t agree with. I still kept involved in
the gay community, and to some degree I kept in touch with the AIDS network too, just to keep
tabs on how things were going, and I think it kind of disbanded after a while especially after
people started getting well, and there was no need for this anymore. I noticed that the stigma
attached to it wasn’t as prominent anymore. I met some nice people at the AIDS network, some
of the girls that worked there were wonderful, the guys too – everybody had a heart of gold, they
all wanted to help, but it was so thrown together so fast that it kind of evolved as time was going
on. And that was when I was involved, that was what was going on, changing all the time and I
think they just kind of did things as it happened, this isn’t going to work, and this is going to
work ‘cause it was so fast put together.

BK: Because it was such a crisis, because it was a reaction to this crisis. You talked about cutlery
at your family’s house. As the epidemic moved from the ‘80s to the ‘90s was there more
information about what HIV was and how it was transmitted available to you and I guess
generally?

TD: I think so. I don’t think you have to be a rocket scientist to figure out where this came from,
because of my behavior at the time, and not taking precaution or thinking it will never happen to
you. And then in the ‘80s it was – there was this small pocket of people, whether it was
prostitutes or whether it was the street people, but I didn’t belong to that group – do you see what
I am saying? In my head, that is what I was saying – I don’t belong to that group, so I didn’t
worry about contracting it. When I was actually diagnosed, it was a complete shock. It wasn’t –
yeah, I fooled around a lot every day, and had multiple sex partners and stuff like that, never
thought that that was, I wasn’t that type of guy, so I never worried about it. And so, that is why I
knew who it was right away when I was diagnosed, I pretty well figured it out pretty quick. The
information, I think everybody had information pretty quick and everybody knew what was
going on. I don’t think – I think that the big push for safe sex was, that finally happened, right,
and that was a big push for that to happen. But even today people, it is just like, it isn’t an issue,
it’s people still make a decision not to be safe and stuff like that and it is still rampant, it is not
going away that is for sure. But now and there is no stigma – you get it, well so what, you get
drugs and you can manage it now, but even that itself, I would just as soon, I wish it had never,
never happened to me, ‘cause now you have a lifelong drug use issue, to manage it and to keep
you healthy. And even the drugs, I don’t know what effect they are going to have on your life
either, so I take every day as a good day, I take every day as a blessing and I make the best of it.






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BK: Do you remember when safe or safer sex was being discussed in the gay community? Was
that something you were hearing about?

TD: I wasn’t hearing much about safe sex prior, I heard a lot of it after and the early ‘90s, even
after I got diagnosed, that is when it started to really come out. It was, there wasn’t many guys
that I knew that had HIV before I was even diagnosed. I knew one, and that individual was quite
a promiscuous individual, and I didn’t think nothing of it, and it kind of snuck up on people, and
then once a lot of people were contracting, dying quite rapidly, I think the safer sex part came
out. That is my recollection of it in the early years.

BK: Within that community, was it something that was becoming quite visible throughout the
80’s still prior to your diagnosis, were you still seeing lots of people or hearing about lots of
people that had HIV?

TD: No, it was more the people, I knew of a couple guys that had HIV or you hear, you can
physically see somebody and he’s looking different because it had such a… It is funny because
the individual that I got it from, you would never tell in a hundred years until a few months later
when I was diagnosed and it was six months later, so when I did actually go to his home to talk
to him, I saw that he was on the couch and was physically very ill and so it was very rapid, and
then he passed away. A lot of the guys that had it, I noticed they became – they died alone or
they died, they all of a sudden left the community especially if you were very sick and you left
the community and you went somewhere else to die, whether it was family or a hospital. You
were all of a sudden removed from the scene, and that I did notice.

BK: It must have taken a really big toll on the community in terms of vibrancy.

TD: That is right, that is one thing you noticed. One day they were there and one day they
weren’t. That I did notice.

BK: Thinking about the early medical response, any observations about what that looked like in
Edmonton to the epidemic?

TD: Dr. Shafran was one of the leading doctors in Edmonton and he had a clinic at the
university. He – very, very nice man and he – there was not much he could do at the early stages,
it was just let’s try this, let’s try that. And I was doing interferon, and I did that for a couple
weeks – I was so sick, and not from AIDS, not from HIV but from the drugs, and I told him I
would rather die than take this stuff, this is stupid. My health deteriorated from the drugs and I
went on more studies that I care to try but I understood that it was all new, they had to do
something. So, they said, okay, this isn’t working, let’s try this. And I said this isn’t working,
let’s try that, and you do all this crazy stuff. And all of a sudden in the mid ‘90s or so all of a
sudden we are going to do a combo of these things, we are going to try that, and all of a sudden
my numbers improved and that was the beginning of that, but before that it was crazy. And I
don’t fault anyone, it was – that was the time, right? You either tried all this stuff… I mean my
partner even had, he tried some really – he tried some lady that he would take blood out of his
arm and put it in the sun and there was so much crazy stuff, and then they reinjected it in him.
And oh my goodness, we tried horrible stuff and some of it not legal I think and I took him to his





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– I don’t know what she was, some health lady or whatever and man, it was just crazy, but it was
all grasping at, trying to… And I, the only thing I did – I didn’t do any of that, I did the medical
end of it and it was torture, it wasn’t pleasant by a long shot, but hey, out of all of that something
clicked in the medical field and they found these things.

BK: A lot of that had to be done in order to reach where we are now with the treatment.

TD: I can tell you that I am personally on the same drugs I have been on for almost twenty years,
I have never had to move from – these were the beginning of it and I have never had to switch.
My body has always been really, really good with it and it is minimal at best. I take three pills a
day so like I have been HIV now for – you do the math – for twenty-some odd years, twenty-
seven, whatever, and I – yeah, it has been good. I have had two heart attacks in-between, one of
them was caused by a drug and they eliminated that one right away, so yeah, it has been good.

BK: Even some of those early cocktail treatments were very hard on some people’s bodies.
There was not really any sense of stigma within the medical that you encountered?

TD: I found none, absolutely none.

BK: Wonderful. Any thoughts on, thinking back to the ‘80s and ‘90s, governmental responses,
or how the government was coping with the unfolding of the epidemic in Alberta or Edmonton?

TD: No, I don’t, I – again, I would say that everybody wanted more money for another program
right, and that is par for the course. I don’t, I never got involved in the political end of things, and
I had insurance an everything from the company that I worked with, so that, and there was no
stigma attached to that. But I think the government, to tell you the truth, was pretty on board in
trying to help as much as they can to eliminate or to fix this situation, so that it wouldn’t continue
on. So, I was never – I think it was okay to tell you the truth. I didn’t notice any stigma or
anything attached to government-wise, I think they did the best they could. I think the
government was as much in the dark – maybe they were slow, governments are slow, but they
did come around. I know the social worker in – Dr. Shafran’s worker, I never knew why I had to
see a social worker, but she always looked after our, are you okay financially? Are you of – how
is your community and stuff like that, more so than the doctor would be, so he had a team around
him that did kind of help if you needed some help in those areas, and sometimes I didn’t, and he
would say go talk to her anyway, and it was helpful.

BK: And that was like another form of support if you needed it. When you were diagnosed, were
you immediately set up with a social worker? Was there support for the actual diagnosis?

TD: This was really weird, when I was diagnosed. I was diagnosed at a family physician and he
told me and then he left the room and he had other patients and stuff like this and so the nurse
came in and said you are done, so I left and he phoned me at home that night and he apologized.
He said that, “You know, I should have talked to you more because this is traumatic,” because it
was the death sentence, right? And I remember going back to my office and I was crying in my
office and I was beside myself, and now what? And I told one of my, the ladies that worked for
me, she and I were good friends, I told her and it was just bizarre. I went home and how do I deal





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with all of this, I had no idea. And that actually happened for a couple weeks until I got to see, he
referred me to Dr. Shafran at the U of A, and so it wasn’t until that I got into that medical end of
things that things started to flatten out. Then he got me involved with the social worker and stuff
like that but we met rarely but he had a good team and we spent some time together. And then it
seemed to kind of smooth itself out, but the initial was really weird, like that was weird. And I
have never – I recall that day so vividly, when I was diagnosed and I just sat there and nobody
talked to me, nothing, and he left the room and the nurse said, “You can go home now,” yes, that
was weird.

BK: It sounds awful.

TD: No, it was not pleasant, but through it all too, I can’t remember what I did. I think I probably
had a lot to drink that night, but I just remember that it was different, and the doctor did
apologize, he had the sense to call and apologize for his actions. It is all good.

BK: How was the community responding to the epidemic? I guess there was the formation of the
AIDS organizations but were there other types of responses that you saw?

TD: No, I think that I just saw the AIDS network trying their best, trying to help the guys that
were infected and I noticed that AIDS had no boundaries as far as who was infected. I met a lot
of people from all walks of life and to tell you the truth there was probably a lot of people that
had HIV that didn’t want to be stigmatized with the label and didn’t go to the AIDS network
meetings. And I too went with the idea that maybe this could be a social aspect of my life but I
can only take so much talk about dying and death, and every week I was reminded where I was
going to be and I couldn’t deal with that anymore. And so, I think of those organizations, that if
something else ever comes up, that they would learn a hard lesson from that. It is almost
traumatic to always be reinforced that you are going to be a goner and instead of trying to see
what, how we can make your life easier, how can you make your life better, whatever time you
have left. And for me it was maybe re-establishing with my family, it was being well-grounded
in my church community and whatever. So, I needed – I didn’t need the support of – I was
craving more the support from my other community, and being that said I had to learn to
distinguish between being gay and being sick and so…

And that was very important to me because if you – people will stay away even if you are sick,
they will stay away because you are gay or they will have a pre-conceived idea, especially in the
religious world, if you are gay then you are different kind of a human being. And so, I wanted to
be accepted for who I am and I realized that what happened is that some people couldn’t accept
me for what I was but they wanted to, and it kind of held them from dealing with what I had. It
was a cause and effect type of thing, you caused this because of your lifestyle and I think that
now I had to circumvent that kind of an attitude on my own in those early years and so I always
understood that this is… God created me as Tony, as a human being, I have a purpose on this
earth, and whatever comes of that, I have to in my own mind decide what is right for me, and
how the blessings come from that. And what I realized is that, in the early years in – that my
family, or not so much my family but the community as a whole, my church community, they
put the differences aside and said okay, we have got to help, we are going to help Tony, we are
going to do whatever needs to be done. I think in this world, in my own, we would have no need





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for AIDS networks if everybody took that philosophy, and said we are just going to help the
needy or help the individuals that are hurting, and put that other stuff aside ‘cause if that comes
into play then nothing gets done. That is why the government needs to pick up the pieces, right?
That is kind of where I was coming from, so I got a lot of support from that.

BK: So, they were able to look past the lifestyle and just help you as a human being. Did that
require you to distance yourself from that label of being gay or that identity?

TD: No, not really. I think that gay or straight or whatever, I am who I am, and it is just like, I
don’t think the god that I worship really cares, that is not the question he is going to ask me in
front of the pearly gates. He is going to ask me if I loved somebody, he is going to ask me if I
showed kindness to somebody, he is going to ask me, did you have some self-control in your life,
were you good, were you a good person, did you show goodness to someone? And that for me,
that is going to be the important part. And I think I lived in a community that – and as hard as it
was, ‘cause not everybody feels the same way, but I lived in a community – even my own sister,
I will never forget, she was always cold to me after I was diagnosed, she had a lot of trouble with
my lifestyle, if you want to call it that. But she came around, she experienced stuff in their own
personal life, in her own family’s life and she realized that life was too short to be angry with me
for being who I am, so that has worked out.

BK: Sounds like an amazing gift that your community was able to love you and support you. We
have heard other stories, their experience with their religion wasn’t very positive, so it is good to
have a more positive story. I guess looking on a longer duration, how do you think the epidemic
shaped or shifted the way the gay community looks or looked in Edmonton?

TD: I think it brought more awareness, the community became more aware of the health risks,
and it became more aware of what to do if you had contracted HIV, because I don’t think a lot of
people knew what to do. I didn’t know what to do, and if it weren’t for a friend who told me
about the AIDS network, it was a resource at the time when there weren’t any resources at the
time. How they dealt with it I maybe didn’t agree with, but how they brought information to
people who had no other resources was good. How did it change the gay community? I find that
I don’t know how it really did. I think it just – they put a bowl of condoms out at the bars and
that never had that happen before, stuff like that. Other than that I didn’t see much of a change.

BK: That is a bit of an obtuse question, but I am just curious about any large-scale things you
may have noticed. It seems to have in some sense changed your relationship to the community.

TD: It did, I won’t lie about that, it did. I think I distanced myself a little bit from the gay
community and I surrounded myself with people that… I’m going to say this, that I think the gay
community is judgemental, and I may even be judgemental saying that, but they are judgemental,
and it is just like… And so even in the early days you didn’t want anybody to know because you
were ostracized, and I think the individuals in the HIV network or AIDS network, that that is
why they flocked to that ‘cause at least you had a sense of community. Whereas in the early days
there was a lot of that: “I think he has got AIDS. I heard he has AIDS.” That sort of thing, right,
but that is damaging to the individuals who suffer from and because they are not accepted, so I





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separated myself other than some social aspect, but I separated myself from the gay community
in those early years. But that is okay, I had to live my life.

BK: I have to ask about this because of the nature of this study, but did you see anything that
was going on in BC or Vancouver at the time? Did you visit at all during this period and I guess
see anything related to your story?

TD: I visited Vancouver quite often – this was my, quotation, party town if you want to call it.
And I never visited any bathhouses in my life – I was not into that. I noticed the – I think that
when you are with a combination of alcohol and party and stuff like that, inhibitions go by the
wayside and there was a responsibility, I think that even for me I had to catch myself by not
participating in stuff that I knew was going to lead to something that is going to be harmful to
someone else, or myself. And so, I think in the Vancouver area I saw a change in that behaviour,
I think I saw – in fact I know there was a change in that behaviour. In the early part there was a
shift – it may be hard to describe – there was a shift in the gay community to be more aware of
our actions in the social sphere, so in the sexual end of things, in the gay community, I did
notice. And I think there was some bar closures and all that kind of stuff and that type of thing
and maybe that all helped. It might have gone underground, I am not too sure, so… And I think
in the early years, people were more aware of the devastation that HIV can cause in your life, not
only death but the whole whatever. And today I just notice there is no fear of it anymore, there is
none, and the last stats I saw is that more young people are infected with it than anybody else.
And so it is just a cavalier attitude toward it where that wasn’t the same in the ‘80s or ‘90s. It
was strong, it was, I noticed here in Vancouver there was signs, there was caution was the thing
that was paramount. That isn’t the case today. It is and it isn’t.

BK: I suppose that is the flipside of HIV being a treatable chronic condition, that people aren’t as
concerned. Based on your very brief thoughts on Vancouver, I guess it was a little more visible
here?

TD: Yes, I noticed it was more visible here. It was also – I think the AIDS Vancouver, PWA I
think they called it here, it had bigger network here because of the gay community here, it was so
much larger, so it had a bigger impact on this community than it did in smaller communities.
And Edmonton wasn’t that small but I did notice a bigger impact here than in Edmonton.

BK: I just want to make sure that I have ticked some of these questions off. Do you remember
when it was that you realized that this wasn’t a death sentence anymore, that you realized you
might live with, ‘cause you were talking about the early years at the AIDS service organization
and the thing that kept being drilled into your head. When was it that you realized, hey, I think I
am going to survive?

TD: About ten years ago, I realized – my doctor is Dr. Cowling and we had a discussion and he
says, “You are not going to die from HIV anymore. You are probably going to die from a heart
attack or old age, one of the two.” I kind of laugh at that – I am not consumed by HIV anymore
as I was in the past. It was always a thought that never left my mind and now I rarely think about
it, usually just when I go to the doctor or when I take my pills in the morning – yeah, here we go
again, but it is part of my routine, my life routine, and life goes on, that’s all. When I realized





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that it’s not a death sentence anymore, for me I am reminded – and this is going to sound weird –
I am reminded of all the guys that I knew that did die, some of them after I contracted it. They
contracted it after me and they died, and that – and I think why am I still here, why didn’t I die
from it? And as weird as that might sound, I am haunted by that a little and I don’t know why but
I think that there is a purpose in my life and I am going to do the best I can to fulfill that. And
maybe that is why, not saying that they didn’t have purpose. I just find it difficult at times, in my
own psyche.

BK: In being able to tell you story I hope that there is an element of being able to tell a story that
other people can’t share because they are not here, a kind of testimony of coming through this.
But yeah, I can imagine the sense of loss.

TD: Yeah, and that is the whole thing, it is just, wow. And I never think about it – you think of
those, oh man, so many people that died. Good people, all of them.

BK: Young people.

TD: Yeah.

BK: I guess looking toward the present, do you have any advice for younger people, younger
generations or people who are newly diagnosed as somebody who is a long-term survivor?

TD: My advice for them is to live your life to the fullest, go to school, be who you always
wanted to be, don’t let it drag you down, don’t let it consume your life, and… ‘cause the minute
you do that ,you are dead anyway. And so, you need to live your life to the fullest and be the
person you were meant to be, and I think that is very important.

BK: Anything that we have touched on that you would like to expand on or anything that we
haven’t touched on that you would like to?

TD: I will probably think of a lot of things when I go home. That pretty well covers it in a
nutshell. I have been blessed in my life beyond measure – I can’t tell you how blessed I feel and
I thank the lord every day for giving me life, and he wants… I just, I am so thankful to tell my
story, I am so thankful to be a witness to what it can be to lead a good life, a happy life and not to
be, don’t let your friends take you down this road, don’t let your HIV or don’t let that dictate
who you are, ‘cause that is not who you are. I had to learn the hard way.

BK: Unless you have anything else to add, and feel free to take a moment to think about this, I
will stop this.

TD: Thank you.

BK: Yes, thank you so much for sharing your story with us.