00:00:00.300 - 00:00:27.300

Also, just briefly, considering you've signed this, I assume you read it all over and are comfortable with everything. Yeah, yeah yeah. As you can see on the sheet, I'm going to give an introductory statement and then I will just have a few questions to just establish the who, what, where, why. And then we'll get into the meat of the interview. Yeah, Is it okay if I leave my mask off? Okay.

00:00:29.000 - 00:01:09.330

Yeah, awesome. Thank you again so much for being here. I'm really excited. So if you just want to give me the thumbs when you're - Okay, cool. So this is the April 29th, 2021 interview of Craig Lustig by Audrey Barnett for the Humanities Truck Community Archive recorded at American University. So Craig, do I have permission to record this interview? Yes. Awesome. Would you be able to tell me what your name is and spell up for us as well? Craig Lustig. First name is C-R-A-I-G and my last name is spelled L-U-S-T-I-G.

00:01:13.500 - 00:03:59.900

Would you mind telling me just a bit about yourself? So that whoever is watching can have some necessary background. Sure, let's see. So I am 57. I grew up in the suburbs of New York City on eastern Long Island and went to college in upstate New York, in a place called Binghamton. After college I moved to New York City and then in - That was, let's see. So I graduated college in 1986 and I moved to New York City where I lived for about 12 years. During that time, professionally I worked in advertising, and the big life event during that time was that I was diagnosed with cancer. So, there were lots of things going on. After my cancer treatment and experience, if you will, I decided to go back to school with the idea to kind of readjust from my advertising career and think a little bit more about how I might work in the nonprofit sector or in healthcare. And so I went to graduate school in New York City at Columbia and then applied for and was accepted to a fellowship with the federal government. And so I moved to Washington, DC in 1998 to start working at the National Institutes of Health, and I can keep going from there, but that was my move to DC. And so I've now been here for 20 plus years, which is as much of a surprise to me as anything else. I am married and coming up on my 10-year anniversary to my partner Pete. Thank you. Thank you. And we have - And this I'd love to talk about a little bit more around the activism piece because I was pondering this little, and I can tell more of the story. But so we were actually foster parents and then our first and only foster child was a little boy who we have now adopted and he's 10 years old. Oh awesome. Yeah, I agree. I'd love to get more into that, potentially later in the interview. I'd love for the moment to start with the early years. So, when did you first hear about HIV/AIDS?

00:04:04.100 - 00:07:09.020

I think that it's important, at least for me, I kind of think about this in the context of generations, right? And so, to some degree, I was quite fortunate because I was maybe the generation after the community that was - didn't know anything about AIDS, but people were starting to get sick and die. And so when I went to, when I started college in 1982 in fall of 1982, AIDS was out there, but I was going to university in a very sort of isolated part, kind of rural area of upstate New York. I was even at that time still just grappling with my own sexuality. So AIDS was out there but I don't think that it was sort of a dominant issue. Okay. And then I think a couple of years into my college career that I became more aware and accepting of my own sexuality and accompanying that was the need to really understand HIV/AIDS and and it was very, very frightening. I think it was very frightening for my generation in part because we looked at the people who are a little bit older than us and said, What is happening? And sort of a two-fold of, you know, what can we do to help them, and how can we protect ourselves? And so, I do remember, I have this memory of going with a friend of mine. At the time I don't think most universities were particularly prepared to help their students to understand and really engage in, let's say, safe sex practices or testing or things like that. So I remember going for my first HIV test at the health department in downtown Binghamton, and I went with a friend of mine who also wanted to get tested. It was something that I felt compelled to do but also really, it was scary. And at the time you wouldn't get the results back for maybe a week or so. There was also this sense of you went for the test and then you spent the next period of time sort of constantly pondering what's going to happen. What will happen if I test positive? What will I do? And so there were in some sense of maybe because we were at the time also - there really were no therapies and it was really seen as a terminal illness that was - It was not only the, "Okay, what's going to happen to me if I test positive?"

00:07:09.020 - 00:09:12.000

But even once I got back my negative test, it had this sort of shadow on your whole existence. What is college if not about finding yourself, beginning to find yourself as an adult and really explore yourself? Having this context of this disease overlaying all of that was, I guess you could say in hindsight maybe a good thing, because if I was a little bit scared at me, maybe it helped me to be a little bit safer, right? But at the same time, it didn't allow me the freedom that in theory, you know, being at a university, supposed to give you. I'm curious. Because you mentioned getting tested and thing. What was the reasoning behind getting that test? Was it of your own volition or - It was. I had - So, the big activity for me in college was that I was part of an acapella singing group I and I was actually one of the founders. But I had this friend who was part of the group and he and I quickly realized that we were both gay and we would hang out socially and we would go to the one of the - you know, again, upstate New York, not a whole lot going on, but we would go together with a couple of other friends regularly to the to the bar or the club or that sort of thing. But you know, we started talking about when testing became something that was more available and we said, We really should go do this. We wanted to know, we really wanted to know, because - and I think I felt compelled to know because this was going to help, if you will, set the trajectory of my life going forward, right? So I needed to have that baseline. And so, nobody said, You should go do this. I think it was something I learned about and felt that it was really important.

00:09:12.000 - 00:10:38.300

And it took us some time to get to the cars and go do it because again, even going out to the Department of Health and saying, "I'm here for an HIV test" was at the time, revealing yourself in a way that could put you in danger. And so there were a lot of crosscurrents. It was, I feel the need to do this, I can't be comfortable being a gay man until I know my status. But at the same time, like so many other things where you have to be careful, this was another one. And you went with then a group of friends from acapella? I went with this one friend of mine. He and I went together and we went down to the health department and they were very pleasant about it. I think, in that sense, the harder part was getting there, you know, and getting over the fear, I have to walk in the door there, and once we were there it was fine. Yeah. So I'm also curious on whether there was a story that had an impact on you, whether a newspaper article or a story that had come via word of mouth of HIV/AIDS that was maybe a first story or one of the first stories that had an impact on you.

00:10:39.200 - 00:12:29.780

You know, I think you have to put this in the context of the fact that being gay and gay culture still was very underground in many respects and particularly when you're not in a big city, let's say. So our exposure to HIV/AIDS was largely within the media, whether it was learning about Magic Johnson or other folks like that. So you would hear about a celebrity or somebody on the news and there was a lot of discussion about it. But it was largely through those public channels, right? Whatever the mass media was telling you about this. There were certainly the beginnings of things where people were looking for education. But it was before the internet of course, so there was no such thing as saying, Hey I'm going to go on the web and just look this up and learn more for myself in a private way where I can start to be better educated and better prepared. Of course media then has certain narratives that they're propagating. So I'm curious then also, who was a person you knew personally? Like one of the first people maybe that you knew who had HIV/AIDS. Well I don't know if this was the first person I knew, but this was somebody who - After college I moved to New York and I had a boyfriend and he had a really good friend. They were buddies from back home and then after school, they had both moved to New York. And he was HIV-positive.

00:12:36.400 - 00:15:04.900

I remember thinking about him a lot and thinking about, How is he caring for himself? How is he doing today? It was again, certainly, a sense of hope that there would be the investments in research that we needed and there would be therapy. So that at the point that he started to really get sick that there would be things for him. But there was a great concern for him. He was - I didn't know the story of how he became infected. but this was just a friend of a friend and somebody that I spent a lot of time with because of that. Knowing that he was HIV-positive was something that I don't think I talked about with him a lot. That's because I don't think he wanted to talk about it a lot. Even in my current job thinking about cancer and cancer patients, everyone's an individual and how you are affected by some sort of significant life-changing event is going to be unique to you. So, I thought about him a lot and he was sweet and kind person and I thought, Gosh, what a tremendous burden for him to have. Was this something that you and your boyfriend talked about a lot? / Was this a person who spent a lot of time with? Were you there to witness like the progression or the emotions that accompany that? Yeah, I think it was - Because this was a childhood friend of my boyfriend. I think that we talked about it from the perspective of how it impacted him. It was a tremendous emotional burden for him, knowing that somebody who had been his life for as long as he could remember, potentially was going to get very sick and maybe was going to die. For many years he was fine. And so this was a great relief, but it was certainly something we talked about in the context of how he was feeling about it, what we could do to be helpful.

00:15:06.200 - 00:18:14.350

And I think that there was, again within the context of being respectful of him, but for my boyfriend and other friends who knew of this person's status, a sense that we - I'm not going to suggest that we had a plan, but that we all agreed that we were going to be there for him whatever happened. And that was just sort of a shared agreement. Yeah. Would you mind clarifying the timeline, like around what year this occurred? And then if it coincided at all with your own cancer diagnosis? So, I graduated from college in 1986, moved to New York City. And so this was within the next, let's say, two or three years, so about, you know, 1989-1990. And then I was diagnosed with cancer in 1992. So there started to be this intersection of - And I was still with the same boyfriend. So he's dealing with his friend who, we don't know what's going to happen. All of a sudden I get diagnosed with cancer and there were so many different emotional waves. And again, back to this idea that when you are dealing with a life-threatening illness, you are unique in how you're going to think about that, imagine all those things, is unique to you. And so maybe this was sort of a transition point for me. And it was interesting in that I think it is really important to acknowledge how HIV/AIDS or for that matter, any sort of life-threatening illness, how it impacts relationships, right? Okay. So we're unique, every relationship is unique. And what happened to us as a couple was that I was diagnosed with a brain tumor. And so there were real, you know, questions about what was going to happen to me: whether I would survive this, and if so, for how long. And I think that my boyfriend's perspective was to become this sort of uber caregiver, which worked okay for a while, but what happens is that your relationship with that person gets really out of kilter, I think that's the way to put it.

00:18:14.350 - 00:20:44.360

As I over the next couple of years, through my series of treatments, started to get better, it was very hard for us to readjust the relationship. That was really a struggle. And of course, there were lots of ebbs and flows in there. There were lots of moments where I was - Being a young adult diagnosed with cancer was something that was unique. Just in terms of absolute numbers, you're not talking about that many people. But at the same time, even today, there's much more in the same with how we think about individuals with HIV/AIDS, again any life-threatening illness, the way we thought of people, we have very different philosophy, right? And as somebody who works in the cancer community, now I think I can kind of understand that and I've witnessed that and how we think and talk about and really engage patients in a way that is much more respectful and - But at the time it was, I am 27 and my family is just panicked don't and overwhelmed. My partner is doing his best to keep me moving through a variety of pretty awful treatments that I had, and it was very, very stressful. Maybe thinking about an interesting turn that all of this took to me in thinking about this idea of caregiving, even while I was going for my monthly outpatient chemotherapy, it sort of awakened me to become more active in the HIV/AIDS movement. Yeah, I could see that connection. Yeah. And so I began volunteering with an organization in New York City called The Gay Men's Health Crisis.

00:20:45.100 - 00:23:17.800

Yeah I'm familiar with that. And so the way that it was structured at the time is that if somebody called up their hotline and said, I need psychological support, I need food assistance, whatever it is they said they needed, before they could get any services at all they needed to go through a process called intake, which was an interview and done by somebody called an intake clinician. All the intake clinicians were volunteers. So I became an intake clinician. I think that experience while I was also going through my cancer treatment was - I wouldn't have characterized it this way at the time, of course, but it was incredibly fulfilling for me at that time. Where at a point in my life, where I felt very, very- I did not have control of my life. And I was basically told to follow this or that order by this or that physician or nurse, or technician, or whoever. And the fact that I could find a way to help other people in a health crisis was incredibly valuable for me. It was very therapeutic. At the same time I felt fulfilled by the idea that I could have a conversation in what, at least for me, felt like a very authentic way with that person in front of me who was HIV-positive. I could say to them, "Look, I'm going through my own health crisis here. I was diagnosed with a pretty awful cancer. I'm going through treatment, I'm being very open and honest with you." And we would sit and sometimes you would have a half an hour conversation and talk about their needs. Sometimes you would sit and talk for two hours and you would come out of that experience where maybe they came in saying, I need housing support and at the end of it, they would come out and you'd find out what they really need is psychological services. They need therapy.

00:23:19.300 - 00:25:59.520

And it was something I sort of tripped into, but it became an incredibly valuable experience for me. And again, on those multiple levels of fulfillment that I was hopefully making some sort of a contribution and being active in addressing the HIV/AIDS crisis, and at the same time doing something for myself in that cancer context. I would like to backtrack for just a moment, just to contextualize it a little bit. How did you find out about your diagnosis? And then also what emotions accompanied that discovery? But I'm also excited to continue talking about that intersection because it's a really fascinating one. But yeah, just to contextualize it a bit. So it's a little bit of a peculiar story. So over the course of about two weeks in early 1992, call it February, I started to have this experience where I would be thirsty and I would drink. And then I would very rapidly need to go to the bathroom, right? I'd have to urinate. And this became this cycle that just accelerated and accelerated. So I would drink more and I would urinate more. And so the point that I was up, 24/7 doing this. So I go to my doctor. And he said, "It sounds like there's something wrong with your pituitary gland." That's the one that's kind of right behind your eyes and it controls a bunch of different things in the body by producing various hormones, one of which is a hormone that controls how your body controls water coming in fluids. I was sent to a lab and I stayed overnight in the lab and they basically said, We're going to measure your output and maybe your pituitary glad will kick in, it will start functioning and it will produce this this really vital hormone or it won't. And so I did that. And at the point then I became dehydrated enough that literally, I kind of blacked out and they said, Okay it's not working. They quickly gave me an injection of this hormone and it was miraculous, so I recovered. And they said, Okay, well, this is good, but we know now there's something going on with your pituitary.

00:25:59.520 - 00:28:30.280

Of course, this is before the time where MRI machines were coming on board and they were really being used a lot. But at the same time, it wasn't the kind of thing where you would very immediately be sent to do this. But now they're saying there's something going on with your pituitary, we need to understand it. I was sent for an MRI, and it was then determined that I had a tumor pressing on the pituitary, basically causing it to cease functioning. So it wasn't making any of these four hormones that it makes and then went further back. And so very quickly after that they said, You're going to need surgery, we will not be able to remove both of these tumors, but we need to relieve the pressure that's happening, because of course, you have your optic nerves and things like that. So I had surgery early May of that year and then there were discussions about what next and there were basically two choices. So, brain tumors are rare by definition and there are many different kinds, and this one is exceedingly rare, I think it's about three or four hundred patients a year in the US who are diagnosed with this. And they said, Well, we can keep you here at this hospital. We can irradiate your brain and it'll probably get rid of the tumors, but we're irradiating your brain, and that could leave you with a lot of deficits, right? Or they said, You can - There is a clinical trial and it happens to be be happening at the hospital down, - You know, I was very fortunate to be living in New York City at the time, which was the one hospital with the only trial in the whole United States. I tried to spend every day with a little bit of gratitude about lots of things. So, I went into this trial, which was focused on reducing the use of radiation and instead using chemotherapy. I went through then about another six or seven months of treatment. The study failed, everyone who was in the study had a relapse, and then we went on to modifying the treatment and that eventually was successful.

00:28:35.000 - 00:30:30.100

Were there a lot of hoops that you had to jump through? It seems like your condition was pretty rare. I'm really curious what the bureaucracy of figuring all of that was like, if it was accessible or not. The tumor I had was - This is maybe in my own mind a little bit of an interesting parallel to the way we thought about HIV/AIDS, which was originally was like, Oh, this is just a gay men disease, then we found out that it was injection drug users, or lots of - basically anybody can get HIV/AIDS. So, the oncology world is divided into adults and kids, there's no in the middle. There's no, there's no such thing as - Well, now, there's a little bit of it, but there was no such thing as a young adult oncology. And so I was treated in pediatric oncology. I went for my treatments, my chemotherapy, my radiation, all of that by and large with, you know, 12 year-olds and infants and occasionally, occasionally, somebody else who was in their 20s. What was that like, or how did that feel? There was - Maybe a little bit going back to my experience as a volunteer with the Gay Men's Health Crisis in working with each patient is that I felt very - I had so little control in part because the position of most of the healthcare providers working in pediatric oncology, which is treat you as if you were a child and -

00:30:30.100 - 00:33:34.500

As a 27 year-old, I'm sure that was strange, right? Right. So it was strange because I'm a working person going in my suit to the clinic where they have a game room to go get my chemo, and so that was strange. And there was something that I finally was able to put into words, which was not only the sense of losing control, but actually a sense of violation. I remember over time I became - Maybe this was the balance of doing this volunteer work almost, was even more vital for my own survival and the sense that it was therapeutic. Because I remember at one point the chemo I was getting was just devastating my immune system. And what do you have there? An immediate parallel with somebody who has HIV/AIDS. I'll mention one more in a minute. So they admitted me to the hospital, and I distinctly remember this experience where some resident comes and they want to put an IV in my arm. And I've had all this chemotherapy, and my veins are no good and he's doing this, you know, he's jabbing at me and he's not getting it. I said, finally - And this is not usually who I am, but I finally said, "Get the hell away from me." Get somebody who knows what they're doing and then they can come and put this IV in my arm. And so, again, it was this sense of - Because I was being treated more like I was child or a minor, many of these health care providers, they didn't think that the first person in the room that they should talk to is me and that the decision making was mine. If my mother was there, "Oh hey Mom let's talk to you." That wasn't always the case. There were some of these docs, in particular the surgeon I had was extraordinary, but this notion that I should be treated and given the focus as the only person in the room who really matters was a life lesson that I tried to carry forward in anything I've done professionally. We always need to put the person who's experienced the disease in that central focus, but I didn't feel that way. And it took me a long time to come back from that, if you will. I think maybe in that - Back to this sort of cross section of what was happening in HIV/AIDS and my own cancer experience. So I'm 27, I have a bunch of other 27 year old friends, right? You know we're -

00:33:34.500 - 00:35:50.600

So I'm curious whether a lot of people in your circle at the time were HIV positive, or what did your circle of people look like at that point in time? Most of them weren't. So as I said, we had this random sort of generational benefit which is that we saw what was happening to folks just a little bit older than us and it it frightened most of us so much that it had this impact, right? But for me at least as somebody who now lost my hair, looked really awful, was going through this pretty long-term and just very, very painful treatment, that I think - So, my group of friends at least, and I wouldn't just count this as my gay friends, but friends in general, and I think you hear about this, when people who have significant diseases sort of did a division. There were some people I think, who just just couldn't deal with it. It took me a long time to understand that it wasn't about me, it was about them. And they didn't talk to me, they didn't offer help. And then there were other people who, who maybe new me less well, who I did not count as very, very close friends, who just came over there all the time and supporting me in so many different ways. Maybe part of that lesson for me was that you do have to give back, you do have to pay it forward. That was really important and so my version of activism if you will in the HIV/AIDS community was, you know, yeah, sure. I went to the occasional, ACT UP rally or something like that. But what I really wanted to do was be there with individuals and I wanted to say to them, I'm walking in here with a different but a life-threatening disease, and I think - I can, I want to be here for you. I want to hear your story. I want to listen. I want to help you get to where you need to be.

00:35:51.000 - 00:37:41.620

Was there any person who did that for you? That then informed the way that you interacted with patients? Or was it more so that bad care informed? No, I mean, I had a friend who was not a particularly close friend. When I started my series of monthly outpatient chemotherapy visits, my parents lived far enough away that it was a little bit of a haul for them to get into the hospital or come pick me up and take me to the hospital would be there at 8:30 in the morning. And so I had this friend who was again, not a close friend, but he would come, he would come every morning. And he would bring me some coffee, or some breakfast or something, and then we would get together in a cab and we would go to the hospital and he would sit with me until one of my parents arrived or somebody else who was going to be there for with me through the duration, and then he'd go to work. I didn't ask him to do that. He just started doing it and it was this incredible expression of humanity that he saw this need. He could have said, I don't know Craig very well. But he just, he just did it. And it was such a gift. I'm also curious how you first started volunteering with the Gay Men's Health Crisis. Did that occur - because it seems as though that occurred at the same time that you were still being treated, and how did the two coincide?

00:37:42.900 - 00:40:46.120

I had surgery and then I had immediately after that six months of chemotherapy. This is all within about a one-year period. Then I stopped because in theory, at that point I would be monitored. But at this point, there was no more treatment I was going to get. And I think that's probably about when I decided I needed to do something to get out of my head, get out of this space, to do something that would be more restorative, almost, for me. And so I started doing this volunteer work and I remember in particular - So most of the meetings you would have with clients who were going to be getting services from the Gay Men's Health Crisis, you would meet them in the offices of the of the organization usually in the evening, "We'll meet around six o'clock and we will sit there in the quiet space and we'll talk for however long you want to talk, and we'll go through your needs and come up with a plan together. But then there were occasions, where some of our clients really weren't well enough to come to the office. So, I did special volunteer work which was hard, but again, had this incredible therapeutic value for me, where I would occasionally go to people's apartments and meet them there and spend time. Then I actually started going to the AIDS Ward at Bellevue which was the big place in York City where they had a designated place for the AIDS patients. I would go and sit by their hospital bed and we'd talk about what was going on and we'd have a conversation about their needs. And again, it was always with the same ultimate outcome which was to identify what this organization was going to do for them. What services were we going to give you? But a lot of folks weren't comfortable doing that, you know, the other intake clinicians. That was a very hard thing to do. And I guess for me, in some sense, because I spent so much time at that point in hospitals, without sounding particularly morose, I think I had - Even at that age, I very rapidly just developed this sense of my own kind of mortality. I thought to myself like, it doesn't matter. I'm not going to go in there and get AIDS from this person, I understand that very, very clearly.

00:40:46.120 - 00:44:56.500

Maybe because I had seen so much of the the the awful kind of visual side of of disease treatment, I had spent a lot of time in cancer wards next to kids in bed who were puking and crying, that I was totally comfortable doing that. It was, it was a peculiar thing in some respects, but it was at the same time something I felt completely comfortable doing, and it was something that was a service to the organization because they needed people who would volunteer for these extra things. And then again, it made me feel like I was hopefully leaving that individual with - I wasn't providing the service, I was going to be doing food deliveries to their home or whatever might be, but at the same time I was able to share some sense of compassion, and care. It'd be great if you could expand a little bit more on the ways in which this service was restorative for you after having spent about a year in the hospital. Or you said, six months in the hospital. Okay, I had my surgery in May. I had six months of chemotherapy from June to December. I stopped. And then 10 months later in the following October, that's when I had my relapse. And so, I remember when my cancer recurred, we don't say I recurred; the cancer recurred. That was a moment, and maybe informed by some of the volunteer work I had done where I learned about this. So I gone back to work, I was on a business trip for a couple of days in South Carolina and I have this call with my oncologist and he says, "You're going to go need to go back into treatment, its back." And so, the cancer experience and maybe spending time with these people who had HIV/AIDS, it just taught me a lot in a short period of time. And so I went home, I spent some quiet time myself, just pondering what I wanted, I do remember thinking. And I then sat down with my family and said - They didn't know because I asked my doctor or said, "I'm going to take a little time before sharing any of this with them." We sat down and I said, "You need to understand, the cancer's back. I haven't determined what I'm going to do and I need you to understand that." And I think the words that I used were, "There may be come a point where I say, I can't do more, I'm done." And that I'm sure was incredibly painful for my parents, for my family to hear, but I needed to say that and sort of take back for myself that sense of being empowered, to direct things going forward.

00:44:56.500 - 00:46:57.900

So maybe part 1 of my cancer story was just listening and following instructions from the doctors. And part 2, my cancer story was more of a conversational like, okay, this is back. I had the opportunity because I had a good friend who was not an oncologist, but who was a physician and was doing all sort of research for me, because again, there was no internet to do that. But he was looking at all the the - going to the medical library, doing a lot of work for me, and he identified some other oncology experts in another part of the country. We went and visited them and said, This is what the hospital where I'm being treated in New York is is telling us, what do you think? And I needed to go through that process of information gathering and making that informed decision. Kind of sounds like the patient empowerment you were speaking on earlier? Would you say that was the first time you felt empowered as a patient, or what allowed for that transition to occur between the first time and the second time? The obtaining of information, or - I think part of it is like that cancer or HIV/AIDS or whatever it might be, when you're thrown into something like that. I think the immediate reaction is that you find the experts and you listen to what they're telling you and then you do what you're told. But what you also, at least for me, maybe in part as a young adult, was that I didn't have that sense of - I was still sort of coming into my own, I'm coming into my own as somebody who's now 30. I'm coming into my own as someone who's gay.