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This Positive Life: An Interview With Robert Cohen

September 15, 2010

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So, fast forward to when you find out you were HIV positive. Did you go to a doctor? Did you get a CD4 count?

Yes, so I tested at the city clinic at 17th and Pond Street, along with thousands of other people. Got my news there. I already had a gay doctor, but I made an appointment to see him and I was just in the middle of some career moves. A corporate relocation was kind of hanging in the balance, while this was going on.

In fact, the day I got my test result, things in that area sort of gelled, and I had to make a decision and on the spur of the moment I said, "Ok, I'll do it." I'll go ahead and move out to the suburbs and take this other job and be away from the city for a couple of years. Maybe that will be good, because this is really a sad place right now.

What I didn't know was that I was going to really need the support that was available to me in the city. There were so many resources, not just doctors, but peer type resources. That wound up being a move where I still spent a great deal of time driving back and forth because I recognized that, this was a pretty traumatic time and I really needed to talk to people and have some help getting through it.


What kind of work did you do?

I was working, actually, for a large company in IT. The job that I took, the relocation was to manage the group I had been part of, the database group. So, the work changed. I had a boss who at some point during these two years, I remember I came down with parasites. I was already worried about being HIV positive and living in this crazy place and trying to take care of myself and then there was this very demanding job.

At some point, this executive who I worked for said to me, "You know if you would worry about the important things here, instead of the little things (meaning the things in your life) then this would all be so much easier." She said this to me fairly early on and I wanted to say to her, "But lady, you have no idea, those are not little, the things I am worried about are not little things."

But I couldn't tell her because even in California, even in San Francisco, there was discrimination. And I just couldn't be open. So I kind of stuck with it. I stuck with it for a couple of years and finally at the end of a couple or so years, I decided that I had to move back to the city. Created a job for myself.

And so what was going on in your personal life at that time?

Well I had fallen in love, I thought. There was a lot of drama.

With a positive man?

No, actually with a negative man. He was very understanding, but I always felt that he truly couldn't reach me. As nice a person as he could be, it didn't seem that he could experience life or really understand what I was going through because he wasn't in the same place. And he hadn't had this news come to him, which at the time, pretty much meant you ought to be thinking about early retirement. You need to be increasing your life insurance policies, which is what I proceeded to do.

I tripled my life insurance, which I was lucky enough to be able to get. I bought a private disability policy, which I kept for years and years and years. I just got rid of it maybe 8 or 10 years ago, when it became clear that there were elite controllers and that I was one.

What was your first CD4 count?

Normal. Probably 1200.

And your viral load?

In those days they didn't have viral load. It wasn't until the '90s until the viral load came out. But clinically, I have never had... I have had one T-cell count that was 391 or something. It was a glitch, an old sample. I have it in my spread sheet. My counts have ranged from 391 or so, to 1800 and something. They average about 1100; you know generally they are sort of 800-900-something, 1100-1200. The same as a person on the street -- nothing unusual.

So back then, when you were going to the doctor each time, were you worried that bad things were going to be found out? Were you worried that they would diagnose something?

Absolutely. Every little spot on my skin, even with plenty of T cells, when they able to do the T cell test. Even with that, I was among the worried well, the very worried well, I think that that's how you could classify me.

"Never had any sort of opportunistic infections. I have been extremely lucky."

You've never had an opportunistic infection?

Never had any sort of opportunistic infections. I have been extremely lucky.

So before we get into this, let's go back to the really bad years. You were worried; people were dying all around you, there were obits in the paper every day, friends of yours were dying. Were you going to their funerals or memorial services or were you avoiding them?

Mostly not.

So you were avoiding them because you thought you were next?

Yeah. I don't think I knew why. But, I just wasn't comfortable with the idea. I didn't want to expose myself in that way, to death.

Because you were just too frightened?

Yeah, and I tried to put into the perspective for the most part these were people I wasn't close with at the time in which they died. They were at best, people I had been close to, some months or years before and our paths didn't cross in those last months or last years or so. That was my rationalization as to why I couldn't go.

Did you take medication or go to therapy to deal with your anxiety?

Oh yes.

Were you on Xanax or something?

Actually, they didn't prescribe anything for the anxiety. At some point it became depression in the early '90s and I actually went on disability for 3 to 4 months. That occurred really when the grief came much closer to home. I had a friend who lived in the neighborhood that I had lived in the city, just around the corner. We just became really good buddies and over the months and years, he got sicker and sicker and sicker.

"Oftentimes, they were experimental groups and often the topic was, 'How does reducing stress in HIV-positive men change their outcomes and their labs?' That sort of thing and there were a number of those and I really loved them. I really liked the stress reduction exercises; I learned to meditate and so on. They were really useful."

He became a really large part of my life. I and a group of other people wound up taking care of him until he died. And so it was through that experience that I really got close, I allowed myself to experience it fully. And you know in the process, surprise-surprise, I was depressed -- major depression.

Were you in groups with other HIV-positive men?

Yes. From time to time, there were groups that were conducted by different researchers at UCSF. Oftentimes, they were experimental groups and often the topic was, "How does reducing stress in HIV-positive men change their outcomes and their labs?" That sort of thing and there were a number of those and I really loved them. I really liked the stress reduction exercises; I learned to meditate and so on. They were really useful.

So at what point did you find out, or did a doctor let you know, that it looked like you were a "special" person with HIV? I don't know what the percentages are? Two percent, 4 percent?

Less than 1 percent actually. And of that less than 1 percent, there's even a smaller percentage of those who are actually elite controllers. There are controllers that are about 1 percent of people as far as I know. So at what point? It was probably late '90s? Gosh, from what I remember, I was in the study with Jay Levy. A friend of mine, who I had in my one kind of only experience with ACT-UP, was someone who I met in that time. She worked at UCSF and she told me about what Jay Levy was doing and was looking at people who seemed to be surviving by some unknown mechanism.

And I got plugged into him and naturally I tried to steer the conversation -- he is a very personable guy, and very easy to talk to. But naturally, I would try to steer the conversation to be about me.

What did he say?

Well for the longest, he would say, "We don't really know." He was quite honest, he told me what he was seeing, but it wasn't until the years added up that the answer became much more obvious. And actually it was not him who finally answered my question, which was "How am I likely to meet my end?"

That question haunted me through all those years, not knowing. It was actually another researcher who had the courage to tell me, "Look, probably, we don't really know for sure, but I'd be really surprised if you met your end with HIV." He says, "It's probably going to be something else that's going to get you."

And I said, "Really? You really think so?"

What year was this?

Probably sometime after 2000 I think, because I lost my lover in 2000. [Editor's note: Robert later clarified the year was 2005.]

From HIV?

From HIV. And, for nine years between 2000 and now is sort of a dark place for me. The depression really continued and became much worse after I lost him.

How long had you been together?

Let's see, about eight or nine years. It was a huge loss for me; it was one of those really close to home. It was painful, in oh so many ways. There was a lot of drama as it happened and it was very difficult.

So how have you dealt with the survivor guilt?

"I have friends who buy a lottery ticket every Saturday. I usually don't buy one, even though we are walking into the store together and they buy one. My story is that I've already won the lottery. It's not money. It's something much more precious."

Well you know, now that there are lots of studies going on, I have found more and more studies as the years have gone by, especially the past 5 or 10 years or so. I am able to contribute to those studies. I travel a couple of times a year or more, cross country, to contribute to studies, and several studies locally. And I figured that's what I can do.

I have friends who buy a lottery ticket every Saturday. I usually don't buy one, even though we are walking into the store together and they buy one. My story is that I've already won the lottery. It's not money. It's something much more precious.

I try to do what I can, to make sure that researchers have the material that they need, if they need material from people like me, they have what they need.

When you say material, you make it sound so cold, like they are actually biopsying and taking blood and invading.

Absolutely, they are biopsying; they are taking white cells at NIH and in Boston as well. They hook me up to a machine and filter out the white cells -- take a couple bags of those a couple times a year and they use those in their research. Apparently, it's invaluable for them to get the white cells in that way.

It also happens that my cells reproduce, are good reproducers, and so the labs usually want to see more and more of me, because the materials I can give them are so useful to them. So that's what I do.

As it happens, even though I'm in this category of elite controllers, there are some scientists who feel that there is a genetic component to that, and that there are certain genes that they can point to that seem to be associated with this. However, the indicators in me are very different. The gene that I have that they would look at is not one of the typical ones. In fact, it is very rare to find this particular one -- it's called an allele -- in controllers. Usually the people who have the type that I have are fast progressors. In some ways, I throw cold water on whatever it is they are proposing, because I always chime in, "But what about me?"

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