Interview with Koba ter Neuzen

19-03-11-KN.docx




“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

1

“HIV in My Day” – Victoria Interview 15

March 11, 2019
Interviewee: Koba ter Neuzen (KN); Interviewer: Art Holbrook (AH); Also present: Bruce
Budden (BB)

Art Holbrook: So, how long have you lived in Victoria?

Koba ter Neuzen: Since 1970. Like, in Sidney, but you know, I worked in Victoria.

AH: Okay. So, what kind of changes did you see in the community in that time? Must be a lot.

KN: Well, the highway to Sidney got to be four lanes instead of two. Uh, I worked at the
university to start with, and it got easier to get there over time.

AH: What did you do at the university?

KN: I was a lab instructor in the chemistry department.

AH: Interesting.

KN: For a while. After three years, I changed back to nursing. And I worked at the Eric Martin
Pavilion for decades.

AH: Right. I always liked going by the Eric Martin Pavilion because someone had scribbled on
the sign there, “Escape!”

KN: Oh…

AH: So uh, when did you first hear about HIV and AIDS?

KN: Well, it was ‘83, ’84, thereabouts. You know, it was kind of in the news and it sounded like
something I worried about globally, you know, but not for me. But I considered it quite a threat
to humanity at the time. And of course, there was a lot of hype about it, and I disregarded the
hype and remained focused on the global impacts.

AH: So, you had a sense of the severity of the news about it?

KN: Yeah, yeah.

AH: So, how did you learn about HIV/AIDS more specifically—I mean there was a lot of hype
on the news—but how did you learn more specifically about it?

KN: Well, at the time, I’m not sure that they even called it HIV. I think that the word AIDS was
around… It’s a long time ago.






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

2

AH: Or were there information sources that you could rely on, or places you could go for more
information?

KN: Well, I didn’t really want to look into it. I’m not the one who wants to get into negativity. It
was a concern, and I felt helpless, like all I could do is hope for the best.

AH: So, how did you respond to it personally? Presumably you are infected, so you’ve—

KN: Well, I didn’t know that until late in ‘85, and it’s a very odd way that this came about. I had
been—I was almost forty at the time and I had been going for artificial insemination, and when
there was mention of AIDS, I think—I’m pretty sure—I checked with my doctor to make sure
that it was safe. Uh, I think it was my GP I checked with, I can’t quite remember, and he assured
me that it was safe, so I continued. And I never really had success, although the very first time I
went, I believe that I actually was pregnant, but I miscarried, which gave me hope because I had
one—one faulty tube. So you know, it would be more difficult for me to get pregnant because of
the tube situation, and the fact that it probably had worked gave me hope. But as I was getting
older, and older, it was a bit of a strain on me—emotional, financial—in all kinds of ways, and I
decided that I would quit when I turned forty and—I’m gonna have a cigarette. It so happened
that I had gone less frequently, because I was feeling kind of hopeless about it. But
circumstances sort of came together that I was on my way to Seattle at the right time of the
month, two weeks before my fortieth birthday, so I decided to give it one more try [sound of a
lighter followed by a deep breath]… And I did, not expecting much because my cycles were—
had—had started to be off, and I figured there was something not right. So, I didn’t have much
hope. But it was my last effort, and it turned out that that’s when I was infected. And I didn’t—I
didn’t hear about that ‘til the fall of 1985. I got a letter from the doctor to say that I had been
exposed to a donor who turned out to be HIV positive and I should get tested…. And it wasn’t
clear where I could get tested, turned out I could do it through my GP—like this was
Vancouver’s talking to me and they had me coming to Vancouver to get tested—and I shared it
with one of my female friends and she kind of tried to say, “Well, women seem to be not very
susceptible to this. You’re probably okay,” kind of thing, you know. And then when I checked
on the results, I was positive. And what I asked the doctor is, “What can I do to help myself?” He
patted me on the back and said, “You’ll be okay.” And that’s when I realized that I was on my
own. It was all up to me.

Bruce Budden: Wow.

AH: Yeah, why would a doctor say something like that.

KN: He was very emotional, you know, like he was almost crying about it. His heart was in the
right place, but he just didn’t have any help available. So you know, those first few years were
really difficult. I felt like I wanted the earth to swallow me up, make me disappear. I didn’t want
people around me, because I was a danger. And I was still working, and here I am working in
psychiatry. And even among my colleagues, there was a lot of ignorance. I believe we had an
HIV positive one time and you know some of the comments from the other nurses showed that
they had no idea about transmission… So, it was just a very hard few years.






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

3

AH: So, did—were you gaining awareness of transmission and what was going on? Were you
exploring the problem?

KN: Well, it dawned on me somewhere along the road or maybe even earlier that obviously it
was through semen, and not through touch or anything like that. That was obvious to me.

AH: So, how did you respond when you discovered this?

KN: Well, like I said, I wanted to crawl into a little hole and disappear. I was very stressed. And
didn’t want to tell anybody. I happened to tell the girlfriend, but only because she happened to be
in my car for a ride when I went to see the doctor. So, of course, she asked how it went and I had
to tell her. And she just took my hand and supported me.

AH: Did aspects of your life change? I mean, you withdrew but…

KN: Yeah, I sure did.

AH: So, your social life changed by just withdrawing. You just didn’t see people or what
happened?

KN: Well, it is a long time ago, but yeah, I didn’t want to be around people. And I certainly
didn’t want to risk any relationships.

AH: Right.

KN: And yeah, and having to disclose, so I put myself in a little box.

AH: Any other aspects of your behaviour that you changed at that point?

KN: I wish I would’ve known you were coming. I would’ve reviewed my notes.

BB: We can stop at any time if you want to take a break as well, or if you want to go review your
notes or anything.

AH: You’re not being graded on this.

KN: I’m beyond being graded… Well, I worked on—oh yes—I worked on pursuing vitamins
and naturopathic options, and I got quite enthused about it, even though I was not very flush
money-wise. It was becoming a bit of a challenge, a good challenge, for me to figure out how to
best combine these vitamins and how to make it as cheap as possible and get the best results.
According to the book I was reading at the time, it was something about immune power. And I
thought, well, I’m on my own, I gotta do something. So, I felt like I had some power to do
something, and I delved into that. And also, I worked on trying to reduce stress in my life, I
figured that was important. So, I lived in Sidney at the time and worked at the Jubilee, and I had
lived in Sidney for almost twenty years, and I thought, well, I should consider moving closer to
work. Oh, at one point—this was in ‘86—I actually rented out my house and moved to an





“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

4

apartment very close to work. And maybe a year later, the people who rented split, and didn’t
pay, and did all kinds of horrible things, so I moved back to my house. But after that, with the
neighbours getting closer to my little private space—like they were building a new house right
next to me that was huge, and the other one moved his house closer to my house—and I was
feeling boxed in, it wasn’t the same place anymore, and I had had a fire in the garage, which
was—well that was back in ’83, so it was a while before—but everything kind of changed and
made me want to get out of there. So, I actually did find a place, and sold my house, and moved.
That was in ‘89, and it was big move because I was—I’m a gardener. I moved the soil, and the
compost, what have you, you know, because I’d worked so hard to create it, I didn’t want to just
give it away. It was a long move. The house I moved to it wasn’t perfect at all, and I was hoping
that I could change it somehow so it would be perfect, or good, and the move was like three
months long, and when I finally got moved with everything all over the place, you know, you
couldn’t move around. And it was Christmas time and I was doing extra shifts and I was feeling
so tired, like sleepy tired. And I thought it was because I had done fifty night shifts—graveyard
shifts—in a row, and then after Christmas, when I was still so tired, I took a few days holidays
and went to a tournament – I play bridge, went to a bridge tournament in Vancouver. But I was
so sleepy I didn’t play all the time, however, I did go to see the doctor in Vancouver, the HIV
doctor.

AH: Who was that?

KN: At St. Paul’s.

AH: Julio Montaner or…?

KN: I can’t remember.

AH: Okay.

KN: Anyway, he did a T-4 test, CD-4 and it had dropped, and he said, “Well, it’s dropped quite
a bit and you qualify for AZT.” And I thought, oh, that’s why I’m so tired. And I instinctively
said no to AZT, and I just wanted to go home and sleep, and worry about things tomorrow.

AH: So, what year is this by the time this happens?

KN: Uh, January 1990.

AH: ‘90, we’re up to ‘90 now.

KN: Yeah, it was end of ‘89 when I started getting so fatigued, you know, to the point that I
couldn’t function. I had actually called in sick to work because I couldn’t function. I’d never
done that in my life. So, that’s when everything changed really, for the better, believe it or not.

AH: And how was that?






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

5

KN: I was so fatigued that all I could do was play with ideas, with thoughts… I decided that
there was only so much room in your head, and it would be good to only let in positive things
and just block out anything negative for coming in and for going out. And meanwhile, I was
aware of my mortality, but it didn’t really concern me, it kind of excited me that I was thinking
about dying, and how—how could that be a helpful experience for other people? You know, how
could I make that into something positive?

AH: So, is this the—the nurse and the psychiatric worker in you that was coming out, when
you’re having those thoughts?

KN: No, it was my huge big self that was coming out, that probably steered me into psychiatric
nursing in the first place.

BB: That part would be the part that has the concern for the whole world, the global aspect of it.

KN: Yeah… Um, so I don’t know, I went to see the naturopath the next day, and almost the first
thing he was something like, “Feed the spirit.” I thought, right on. And I still didn’t want to take
any meds, and uh, it’s really hard to describe the kind of stuff that happened to me. A friend of
mine had mentioned what she called a magnetic healer, and I thought, well, I’ll try anything, so I
got in touch with this person and he would come over and put his hands on my body as I was
laying in bed. And one time when he put his hands on my head, with my eyes closed I saw blue,
and I told him and he said, “That’s the colour of your illness.” I thought, oh, that’s nice. But
then, I began to get flashing sensation in front of my eyes when I was just going about my
business, all kinds of colours. And I—I thought that was interesting, but I had no idea what that
was all about.

AH: Were you still working at that time?

KN: No, uhm… After I had seen the Vancouver doctor, I went to my GP and I told him that I
was so terribly tired and could I be off work for awhile, and he actually had me off work
indefinitely. And that was a bit of a relief that I didn’t have to deal with that, you know, that I
could focus on myself, and I didn’t have to worry about the red tape of working in the hospital. I
could be free in my thinking. And it was like… there were many doors inside me, and I just
fearlessly went through all those doors trusting that whatever was on the other side was good.
And it, as it turned out, that was kind of the beginning of a mystical period in my life where I
became able to communicate with whatever you call that’s up there, and get information, and get
support, and get love, and I became… kind of one with the universe and with everything in it. I
was part of the rocks and the water and everything, there was no distinction between me and it, it
was all one – it was a wonderful feeling. And the feeling of love that came out of nowhere was
just amazing, and you know, when I closed my eyes it felt like I was walking with death in
heaven, and it felt wonderful, it was a friend. And it wasn’t just for a week or so, it was like for
two years that this happened. And it was the best experience of my life, really. Here I had gone
to get a baby and I ended up with HIV. Well, maybe HIV is my baby.

And in fact, I started thinking of HIV—oh yeah, that’s an important thing that happened—that
was in the end of, I think it was the end of 1990, could’ve been ‘91, no I think it was 1990—and





“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

6

I was on my way to a rehearsal, a choir rehearsal where I had disclosed that I was HIV positive,
and thought, well, these people are going to be worried about this blood. So, on the way there, I
stopped by emergency and had myself taken care of. And then when I got home, I just couldn’t
help myself—I had this spontaneous chat with my blood, and I said something like, “You know,
other people may not like you, but I like you just fine. You are fine where you are. I don’t want
to get rid of you, just stay where you are. We are one in the same, we are together. We are one.”
And I really felt it—that HIV and me, we’re one. And there was love there, I mean how crazy is
that—to love a virus right? But that’s how I felt, and I felt it very strongly, and I even named
HIV Hivan… And every year, I celebrated Hivan’s anniversary by taking a friend out for lunch,
and Hivan was the guest of honour at this lunch, and we were honouring Hivan having come to
be with me. So, I mean that’s a little weird, but that’s how it was.

BB: Did the people that you were taking out for lunch, did you tell them why you were taking
them out for lunch?

KN: Oh yeah, and they were on board

BB: That’s remarkable.

KN: At least they said they were. Yeah, I explained it all to them, you know that, you know we
are together and this is me. I mean Hivan is me, and I am Hivan. We are inseparable. And then I
start well it’s in a way, it’s maybe like a baby in a pregnancy that you know you are one but
you’re somehow separate, but there’s a huge big one-ness. Of course, I’ve never been very
pregnant, so I don’t really know, but you know, I played with the thoughts. And they were
nourishing. And it was kind of fun, to come up with new thoughts.

AH: Well, that’s quite fascinating.

KN: And having no censorship, and everything was possible.

AH: That’s impressive. There’s a series of questions here, sort of shifting gears to how the rest
of the world responded, and your perception of it. What was the governmental response like?
You’re back in the Vander Zalm years there, I think.

KN: The which years?

AH: Vander Zalm, the Premier?

KN: Oh. Ohhhh I don’t—I wasn’t paying much attention to politics I was just too—too
preoccupied with my little world.

AH: Right.

KN: Yeah, the world got so small, it was me and the garden and the house. You know, that was
all that was important, the rest didn’t matter. Well, it did, but, you know, I wasn’t living in that
world, I was living in this other world tha—that world.





“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

7


AH: So, were you seeing doctors at the time, or were you depending on your health remedies
that you were seeking out?

KN: Yeah, I was seeing—I was still seeing the naturopath once in awhile. Oh, I went to see
my—went back to my doctor-oh when, after I had become, let’s call it ill, he got me off of work
and he said, “Oh yeah, you have AIDS and you have three years at most.” And I thought, maybe
yes, maybe no, but he’s not in charge of this, and I actually went back to him and told him that I
was in charge, not him [laughter]. Yeah, that was good. I had to do that.

AH: How did he react to that?

KN: Uh, kind of sheepishly. Yeah, was not something he expected, but he didn’t object.

AH: So, you withdrew in many ways, but did you observe the public reaction to—

KN: Well, after I got sick, we’ll call it getting sick, I started to become public. I started having
interviews with magazines and newspapers and called a board meeting, and disclosed to my
colleagues what the problem was, never telling them how I got it, because I wanted to protect the
gay guys, ‘cause you know I’m no more innocent than they are. Um, so that felt like it was a
healing experience to not hide anymore, to just assume that everybody knew, and let people
know. That felt healing.

AH: And how did they respond?

KN: Um, my only recollections are of positive responses. Yeah, I don’t remember anybody
withdrawing or being negative about it.

AH: So, didn’t experience any stigma, or anything like that?

KN: No.

AH: Hm, that’s good. Did it affect your work relationships—I mean you’re dealing with
patients?

KN: Well, I was not working by then. After I got sick, I never worked again.

AH: Okay. So, you disclosed as you were leaving or…?

KN: After the doctor had me off indefinitely, that’s when I disclosed to my colleagues. And to
anybody who wanted to know. You know, I had these articles. I was in Chatelaine, and a
women’s magazine in Victoria, and Times Colonist had a half a page about me, and stuff like
that. And I never told anybody how I got it.






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

8

AH: Interesting. So, you were pretty much—pretty much to yourself, so I don’t know if the next
question is relevant to you. How did the community respond? Did you have anything to do with
the HIV community?

KN: Uh, yeah, after I got sick—can’t quite remember, maybe even before that, probably before
that—I contacted the very long ago PWA, which was a two-man outfit. I mean, that’s a long time
ago, right? And initially, I didn’t get much of a response that satisfied me, so I kinda let it go, but
then after some time, this person called me back and told me about another woman who was HIV
positive, and did I want to meet her. I said, sure, yes. So that’s when I got involved with not only
that woman but also the PWA organization, AIDS Vancouver Island, we set up a women’s
group. And I attended the general support group. I mean AVI was just beginning to blossom at
the time, and I became very involved with all the PWAs in the group. I went to all the meetings,
the support meetings, you know? And that’s after I had become ill and felt that I had something
positive to share with other people. That I wanted to give.

AH: May I ask who that other woman was? Was it [name]?

KN: No.

AH: No, not [name], okay. I knew [name] very well.

KN: I don’t know. Did I know [name]? But anyway, this one was…

AH: You don’t need to answer that, specifically, I was just curious about [name].

BB: I wanted to ask your reason for not telling people how you got it, was that to the end of—
kind of not leaving like, because some part of you knew that anyone could get it from sex, that it
wasn’t just gay—

KN: Right. Yeah, I wanted to make it clear to everybody that anybody can—if I can get it,
anybody can get it, right?

BB: But if you said that you got it from IVF, then people could still point the finger at gay men
and say…

KN: Yeah, yeah. I wanted to be on their page and help them.

BB: Wow.

AH: So, as things developed with AVI and PWA, you became more involved, did they become
smarter about it, for lack of a better word? You’d said when you first went, they weren’t too
responsive?

KN: Yeah, I think PWA was first when it was just this two-person organization and then
somehow I kind of got away from PWA and got more involved with AVI when they had some
steam going, you know? And they were right across from my bridge tournament, where I played





“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

9

bridge, it was very convenient. It was like my second home. And yeah, and you know, I went—I
organized potlucks for PWAs once a month, in people’s home and it was really important to
keep in touch. Of course, we had a lot of memorial services as well. Unfortunately, that was a
nice time to meet your friends.

AH: Did any of your family become involved?

KN: I don’t have family—here.

AH: Oh, okay. Why is that, if I may ask an intrusive question?

KN: Yeah, well, I emigrated to Canada on my own, so my mother died when I was twelve, my
father wasn’t a very good father, and he was glad that I disappeared. He had two other children
who are much older than I am from a different mother. So, when I was a child, my brother—he
was twenty-three when I was born, so I hardly even know him. He happened to be in Canada, but
we had no connect. Uh, my sister was fifteen when I was born and she was more like the
substitute mother, but she wasn’t very good at it either.

AH: Where were you from?

KN: Holland.

AH: Holland, okay. So, not family, but other loved ones, any of your personal network get
involved?

KN: Not really. You know, I was basically on my own.

AH: Okay, so you found the community in the AIDS community.

KN: Yeah, yeah.

AH: Okay. Were you involved in any—did that thing?

BB: It’s okay it’s just telling us the battery is low.

AH: Oh boy.

BB: It’s good we’re at twenty percent.

AH: Oh, okay. Were you involved in any activism, on any of the act-out kind of thing? You
were a member of…

KN: No, I don’t do that, that’s not my style.

BB: More the education side of things.






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

10

KN: Oh, I did go out to – you know, I was a speaker at many events, so that was my contribution
you know, to show a face to AIDS.

BB: It’s activism in a way.

KN: Yes, but it’s not the other kind of activism.

AH: Did you provide care for people who were living with HIV or AIDS?

KN: No, I thought it was more important to take care of myself. And this woman friend of mine,
she did clean people’s houses and stuff like that, and I thought she shouldn’t do that she should
look after herself. And in fact, she died.

AH: Hm. Yeah. So, looking around the HIV community, how did people handle the grief? The
burden of care, and the grief of losing people? You were involved with AVI and PWA, so you
were seeing people around you die, and you went to the memorials. How did people handle that?

KN: Well, it was kind of – well, this is the way it is, kind of thing, you know. Like my female
friend said, “It’s like London during the war.” Mind you, she wasn’t even born then, but her idea
of London during the war was, okay, that block got hit, we are lucky. Maybe the next hit will be
on us, kind of thing, you know?

BB: It just became normalized.

KN: Yeah, yeah.

AH: Uh, looking around the HIV community, has it been changed by the epidemic? Does that
question make any sense?

KN: I don’t know.

AH: Has it—well a more specific question, has it made the community stronger or weaker?

KN: I really can’t answer it. I mean, I was very involved for a period, and then I started to
withdraw, and I am not very much in touch with the AIDS community anymore.

AH: So, was there any reason why you withdrew or you just find it was time to take care of
yourself?

KN: Uhh… Can’t really remember. It’s like, you know, oh, all the important HIV people had
died. And AVI was changing – it wasn’t as friendly anymore.

AH: So, your own associates, the people that you did form some form of bond with were dying?

KN: Mhm.






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

11

AH: Yeah, well that makes sense, to move on at that point. So, how has your perspective on
HIV/AIDS changed over time? You’re still in touch with Hivan?

KN: Just in the last few years, I decided that he is so grown up now that we don’t need to
celebrate his birthday anymore. But you know, I’ve done that until he was well into his thirties.
And then it donned on me, not long ago, that he has really grown up. And you know, oh you
know, one thing that may be of interest is that I was involved in a court case about my—the
circumstances of my infection. And I kind of dreaded that and—

AH: Who did you—did you sue the organization that—

KN: The doctor.

AH: The doctor that gave the artificial insemination?

KN: Yeah.

AH: Right.

KN: And I only did it, not out of anger or anything like that, but as a practical thing. I don’t
know what’s down the road, I may need some financial help… so um, and you know, one of my
friends when I talked to her about it she said, “Well, people have sued for less,” I’m not the suing
kind. So, as we approached this court date, I was still totally involved with up there, I’ll call it,
you know, I was not on this earth. And my hope was that we would both win, we would both
gain from the experience, that there were no losers, whatever the outcome. That we would all
come away with something good. But I was dreading the fact that I had to go public now, with
how I got it. And I tried my best to, again, downplay my so-called innocence and advocate the
plight of the other not so innocent ones. And I think, even though it was really hard because I
was just totally not angry with anybody, I had come to the realization that I had put myself in the
wrong place at the wrong time, which was probably the right place at the right time, for me.
There are no coincidences. No accidents. I’m in charge of what happens to me, and I made
myself do this to me, for a reason, even though it was unconscious. So, there’s no anger.

AH: So, what was the—how did the case come out?

KN: Well, the initial outcome is that the jury found in my favour, and awarded me a million or
something, but of course, there was an immediate appeal. And I didn’t receive money pending
the appeal, and then my lawyer had to—I left it all to my lawyer—I mean, I didn’t want to get
involved in all this. It was for them to figure it all out. I was just going along for the ride, really,
and hoping to have something good come out of it, for everybody including the doctor. And that
lawyer of his who was trying to make mincemeat out of me, I would think, well, he’s got a
mother who thinks he’s wonderful, so there must be something really nice about him.

AH: So, did it ever get resolved finally?






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

12

KN: Oh, it took years and years and years and in the end I lost. It was overturned. Or, you know,
my lawyer had gone to the Supreme Court in Ottawa, I can’t remember the name, and they
ordered a new trial. And they had a new trial, and she couldn’t talk about this and she couldn’t
talk about that, you know she was really restricted in what she was allowed to argue. And in the
end, I lost. And so, that’s how the cookie crumbled, but you know, and that was years later when
I was no longer in that dream-state. I was more back on earth by then.

AH: So, how did you feel about that when you lost the case?

BB: What was the good that came of it in your perception?

KN: Well, I ended up with this house. And you know, that’s a very complicated thing to explain,
but if it hadn’t been for the court case initially I wouldn’t have found this house, and for me, this
house has been my salvation. It has been paradise for me.

AH: Well it is lovely with the view out over the gorge.

BB: I had a little walk down there. It’s quite lovely.

KN: Yeah, and you know, I was born a gardener, I can’t do it anymore because of my current
health, but this has been the perfect place with privacy, serenity, peace and quiet. It’s just been
my ideal house.

AH: Well, that’s good.

KN: And when I—I had a cat at the time, who has since died. When I moved that cat from my
house in Sidney to the next one, she got onto my bed and she shook there, for days. Like she
didn’t like it. When I brought this cat, the same cat to this house, she went hopped onto a chair—
I was living upstairs then—she hopped onto a chair, didn’t even bother looking around, went to
sleep. Like she’d always lived here. You know, it was just perfect. It was meant to be, somehow
it was meant to be. Now, I did get ill later on, don’t know if you want to know about that?

AH: Yes, go ahead please.

KN: See, I had refused AZT, and then later on, some of these pills came around. And
instinctively, I didn’t want to do any pills. It felt like the cure—oh, oh, the other thing that was
part of all this creative thinking was that HIV, I put it into the garden, what’s HIV in the garden?
Well, it’s like aphids. And there’s room in the garden for aphids, they’re part of what belongs in
the garden. They should be there, they just shouldn’t get out of control. So, you remedy that by
companion planting, and keeping the rest of the garden healthy and all that, you know. So that’s
how I viewed HIV in the garden of my body. So, I didn’t want to have the RAID come out. And
then [lighter igniting] in 2004, I had a bit of a lump in my neck and I was—I’d been fired by one
of my doctors, so I was kind of without a GP. And this doctor I was seeing would only take one
thing at a time in a visit, it was really hard to get to stuff, and I didn’t know what was important,
so it tried to give him a list so he could prioritize. It was very frustrating, it didn’t work very
well. But anyway, he did send me to a specialist and I had uh… I had just arranged for a trip to





“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

13

Europe. And that was the first time thirty years. And I was going back to Holland, and—and
other places that were important. And the specialist said, oh, I should get a biopsy and I
shouldn’t go anywhere, and I thought, ha-ha-ha, I’m going. I mean if this is serious, I’m going
now before I fall over. So, I went, and then had the biopsy done as soon as I came back. Well,
turned out that I had lymphoma from HIV. And it was a really difficult road because the
oncologist I initially had treated me like a six-year-old and did not communicate well, did not tell
me recommended treatment, didn’t tell me prognosis—just took my history and sent me home.
And then I would get a call for a test that she had never discussed. So, meanwhile I am trying to
look on the internet to find out more about this lymphoma business, and it seemed that the
recommended treatment was chemotherapy. But imagine the thought that I had about my body
being an organic garden, and here they’re talking about chemotherapy. That’s the RAID ten
times over. Can’t have that. Anyway, I couldn’t handle this doctor. I went to my GP and I said,
“I need a new oncologist,” and I went to the oncologist and I said, “Would you please refer me to
somebody else?” And my GP said, “You fired your oncologist?” I said, “Yep.”

And I got another one who was more forthcoming, and she said, “Well, the best treatment is
chemotherapy, but we have to get your viral load down first.” Apparently, it had gone up. So,
now I had to make it okay in my head to take the pills to get the viral load down, and I had to
make it okay to take chemotherapy. This was a huge, big challenge for me. So, first the HIV
meds, of course it took awhile because I had to be referred to my immunologist, and then he had
to do the paperwork for St. Paul’s, and it took forever and ever and ever. But the way I made it
okay is to see the pills as birth control, not as something that destroys the virus. Birth control,
which is okay. I mean, we do birth control, so why not HIV. Birth control for HIV is okay.
That’s how I made it okay. But then I still had the big problem of chemo, how to make that okay
in the garden. Realizing that if I didn’t make it okay, it wasn’t going to work, you know. And
something a friend of mine said kind of made me think. He said something like, “Not every
garden is ideal.” And that made me think, oh, I didn’t put cancer in the garden. HIV is there—the
little buggers are there—but I didn’t put the cancer there. And what would that be in the garden?
And I came up with those morning glories that have those fleshy roots, that go all over the place,
and the morning glories, they strangle everything. I thought, oh, that seems like appropriate now.
How do I fix that morning glory in the garden, without killing the garden? And then it came to
me—a forest fire. You know, kill the morning glory and have new growth. Rejuvenate the
garden. And I was excited about this stuff – rather than dreading chemo, I was thinking, oh, here
comes my forest fire, you know? I was excited about it.

But before I got there, I got really, really sick and I had liver failure, and I wasn’t expected to
make it through the day even. And the doctor had me admitted, and then the other doctor who
works only in the hospital, she came in the morning, she said, “You’re a very sick woman.” Oh
yeah, tell me more, that’s what I was thinking. Well, she wasn’t saying anything, and I thought
how am I going to make her tell me how bad it is? You know? And I said, “Well, could I die
today?” And she said, “Yes, would you like me to get clergy for you?” And I said, “No thanks.
Thank you.” And I went back to rest. Meanwhile, she was talking to my friend and telling my
friend, “Your friend may not come home from the hospital.” And uh, I think my T-cells were at
about one, point-zero-one or something, and even my immunologist didn’t really tell me how
bad it was. But I was comfortable, and I thought well, what will be will be. I’m okay, you know,
whatever happens. If I die, I die. I mean I know up there, I’ve been there, it’s pretty nice. Uh, just





“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

14

sorry that I have to leave a mess for my friends. So, I felt peaceful, and the next day I started
chemotherapy, and the first IV fluid I got was red, and I said, “Ah, my forest fire, here it is.” And
then I—the nurse was there, I said, “I gotta tell you a story, sit down.” And I told her all about
my forest fire, and I figured that articulating it makes it stronger, gives it power. You know.

AH: Were you taking HIV meds at that time?

KN: Yeah, I had taken them just for a few weeks to get the viral load down.

AH: But before that, you weren’t taking them?

KN: No, that’s twenty years after I got infected and that’s when I first started taking them, a few
weeks before the chemo.

AH: Ah okay. Do you take any now?

KN: Yeah.

AH: Do you take PrEP or some of these things that are the new drugs now?

KN: Oh I’ve been on the same ones for years. Efavirenz and Sustiva, I think.

AH: Mmhm. Well you obviously came through the lymphoma, here you are sitting here, fifteen
years later?

KN: Yeah.

AH: So that came out well.


KN: Yeah.

BB: The forest fire worked.

KN: Yeah, well that was a big thing for me. Whatever happened. It wasn’t my aim to live at any
cost, I was totally fine with dying. But I was playing with these thoughts and these ideas.

AH: Right. So, any advice from health professionals from your—you have a rather interesting
perspective on all these things—any advice for health professionals?

KN: Yeah, like creative thinking is very powerful. And uhm, well people call it positive thinking
but I don’t think that’s the right terminology. Like my magnetic healer explained something to
me once and he called it ‘againstness.’ He was talking about okay there’s a forest and there are
people who want to build houses in the forest, and then there are people who are against it, and
the people who are against it make it stronger. Like, it’s better to be for something than to be





“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

15

against something. And that’s the difference between positive thinking and positive thinking, you
know.

BB: Focus on what you do want, not on what you don’t want.

KN: Yeah. Give power to the thing that is good, rather than power against the thing that is bad.
And thoughts do count, I mean I have had all these weird thoughts and they have been very
powerful, and you know here I am thirty-some years later and for some reason I’m still kicking.
And all my friends with negativity, they’re six feet under.

AH: You mentioned a moment ago that you got one of your doctors fired, who was that—err,
not who was that but what were the circumstances of that happening?

KN: Uhm, I wanted to be in charge of my health and my medication and I had found from one of
the PWA books, written by PWA’s, long time ago about things that may work, that might be of
benefit. And there were some that stood out to me as intuitively correct, and I wanted to go with
my intuition. One of these was low-dose Naltrexone. And I tried to get it and there was no doctor
who would prescribe it, plus it has be compounded because it comes in fifty milligram pills and
you only take four milligrams. So I—I had actually, on of my trips through the States I had found
a doctor who was willing to prescribe it, but then I couldn’t find a pharmacy that was willing to
process it, because it was a US doctor. And at one point, I can’t quite remember how it went but
it was about this Naltrexone, and I had told my doctor my current GP that I wanted to take this,
and she had actually referred me to someone she thought might prescribe it. And he didn’t, or
wouldn’t, or whatever. And at one point I had gone to a walk-in clinic and got a small supply,
and when she found that out she fired me. Even though I had been totally open with it.

AH: Hmm. So is there anything else that we haven’t talked about that you’d like to say?

KN: Uhm...

AH: You’re not required to find something.

BB: If you do think of other things, we can always come back as well, we’re willing to do that.

KN: Ahhh... I have always wanted to write a book about my unusual experience, but it hasn’t
gone anywhere, I haven’t gotten anywhere with it. And so you know if you have any connections
who might be interested, or help, that would be awesome.

BB: Yeah, we’ll pass that along. I don’t have anyone.

AH: Well.

BB: Well the battery is almost dead.

AH: Well I guess we’re at the point where we should say thank you very much. And uh—






“HIV in My Day,” Koba ter Neuzen (March 11, 2019)

16

BB: Yes thank you, that was a remarkable story.

KN: Surely it was different than most.

AH: Yes it certainly was.