An interview with Ellen Matzer and Valery Hughes

Valery Hughes & Ellen Matzer

December 1, 2021, was World AIDS Day and marked 40 years since the then-unnamed virus began to make mainstream headlines.

In 1983, HIV, the virus that causes AIDS would be identified. It would be almost four more years before the first treatment for AIDS, AZT, would become available. By then, thousands had died.

After 40 years, and millions of lost lives, there is still no cure for HIV, and while there are new drugs that allow many people to live with this deadly virus, it is estimated that up to one million people around the world died from AIDS in 2020.

The day before World AIDS Day 2021 I had the great privilege to sit down with Ellen Matzer, RN, CCRN, and Valery Hughes, FNP, RN to talk about their experience being on the front lines of the AIDS epidemic and their poignant book.

Ellen and Valerie, thank you so much for making time to meet with me and thank you for writing such a great book. Coming out and growing up at the advent of the AIDS epidemic. I remember vividly what it was like, the devastation, the fear. It’s obvious what the catalyst for the book was, but at what point did you decide to put your story into a book for others?

ELLEN: We decided to write it in 2017 and The book came out in 2019. It was almost a two-year process. The backstory behind the book is that I have a friend that I’ve known since I’m ten years old, a history professor, and an attorney. We had gotten together with a group of people from my grammar school days back in 2017; we hadn’t seen each other in almost 50 years. As the get-together progressed, we went around and asked what everyone has been up to for the last 15 years? Everybody knew I was a nurse, then I explained how I had worked in HIV and AIDS, and my friend, whose name is Professor lane, said, “You should write a book about that.” And I said, nah, who would want to hear about that kind of thing. He says, no, no, you should write a book. He was insistent.

I just sort of tossed it off for a little while. And then in the summer, I started thinking about it seriously, and I just sat down at the computer and started typing. All these memories I’ve had, and stories just started to come alive. It started off as a solo project for me; then I said, wait a minute, something’s missing. I called up Valerie, and I said, Valerie, we’re writing a book. And she said, okay, what are we writing about? That’s how it got off the ground. It just took off from there.

VALERIE: My strongest memory of prewriting the book was jotting down a bunch of stories, I had all the stuff already written, and you had all this stuff already written. I realized that it could really happen. I do a lot of writing anyway. But this was a completely different kettle of fish. So, it was kind of exciting to do something that I was not used to doing.

Well, it’s wonderfully written and put together brought back a lot of memories as I read through what you were sharing on the pages.

VALERIE: And I hope it has a sense of time and place.

It really does. And it resonates, especially for me having come up in that era and remembering what it was like. I was 14 or 15 years old when news started to come out about this strange virus in the gay community, and nobody knew what was happening.

I’m from Minnesota, and it wasn’t quite the same as where you were in New York seeing it. We weren’t at that point; we were hearing from other places in the country.

When you first started hearing the rumblings, did you think it would be this huge pandemic? Did you think it would have the devastating effect that it did?

VALERIE: Definitely not. We did not have the slightest idea. Maybe that came across a little bit in the book, but we were siloed if you will. We worked in our hospital and didn’t really spend a lot of time talking to nurses at other hospitals. Not that we weren’t friendly with nurses at other hospitals, but you just don’t always discuss your cases when you met up with them. There was also no venue for that; there was no ANAC (Association of Nurses in AIDS Care.)

ELLEN: No cell phones, no social media, no taking pictures, no tick-tock, you know, all this stuff, shared everywhere now. We had nothing back then, nothing. Who thought to document it? It was 30 years later that we started to reflect on all these things and realize how significant it was.

VALERIE: It’s kind of amazing that we didn’t get together with people from other institutions. But the fact of the matter is, there was no precedent for that. There was really nothing back in those days; the nursing organizations were not meant to get together on a local level. In fact, I was one of the founding members of the Association of Nurses in AIDS Care because we saw the need.

I certainly think that we take for granted all the social media and other platforms for sharing information we have today. We didn’t have those, especially in the LGBTQ community. We had our local newspapers, but things weren’t covered in the mainstream press the way they are today.

VALERIE: No, you were looking at Morbidity and Mortality Weekly Review, the only thing that you looked at for any kind of information. Even the New England Journal didn’t have much; sometimes, in the beginning, there were a couple of letters, but it took quite a long time for people to realize this was a big deal.

Did you ever imagine that your careers would intersect with something that would have such social impact as HIV has had,

VALERIE: We thought that we were in our end sub-specialty, which was intensive care; both of us thought was where we would be forever. We didn’t know that we were going to do anything else. It was a specialty that evolved as we grew up in nursing.

ELLEN: There was no HIV specialty. The first one was at Saint Clare’s hospital. I recall, because Val and I had left both left Roosevelt Hospital in the city, which is where the book begins. I was working in a hospital in Queens, and I remember seeing the New York Times advertisement for Saint Clare’s first designated AIDS unit. I’ll never forget the saying it was “Make your contribution to human health when your contribution can be most crucial. There’ was a whole page advertisement, and I remember saying to my former husband at the time, who was also a nurse, I said, we need to go there. And then there I was, I literally started like after the weekend. It was that quick. Saint Clare’s was so desperate for nurses; nobody would work there. Nobody. I was the first registered nurse on one of the units, and my former husband was the second nurse on the other unit because we started two.

VALERIE: Saint Clare’s had a very bad reputation at the time. So that’s why nobody imagined they would be the first AIDS designated unit.

ELLEN: The hospital was being financially salvaged by putting that program in place. Not to mention, it was such a horrendous part of the city to even be working in; Hell’s Kitchen. It was not a good area. The hospital was so rundown. I remember walking in there and going, oh my God!

There was no air conditioning; there were no chairs. We really started units and a clinic with nothing, no furniture, no computers, no chart holders, no chart racks, no doctors. Anybody that walked into the door of Saint Clare’s got hired and trained to do something. Of course, the nurses had to be nurses, but the orderlies, nursing assistants, unit secretaries, they just walked in the, and we would say can you be a unit secretary? Sure. Okay, here you are, sit, answer the phone and then figure out what’s next. It was like that. There was no requirement to be a certified nursing assistant or have any background in secretarial services or hospital terminology, medical terminology. You just walked in, and if you weren’t afraid, you had a job.

VALERIE: That was the thing; if you weren’t afraid, you had a job because so many people were afraid. People were so afraid that they would not come and work with people with HIV. Nurses who had worked for years and years would refuse to go into the rooms.

I don’t know if you saw Pose, but when Billy Porter’s lover was passing away, and he went in and he saw trays outside the door, that was very common. People didn’t get anything to eat because they would leave the tray outside the door. It was insane.

In the book, you talk about how you both experience the ignorance and the fear of the virus and the LGBT community? You shared that somebody was talking about how “they” deserved it. Did you lose relationships over all of the ignorance, attitudes, and indifference?

VALERIE: That’s a good question because I’m not sure I had any kind of decent relationship with people who would have felt that way, to begin with. But there was a lot of that. We always heard stuff like that.

I can remember when my father got sick, and I made sure that he was shaved and that his nails were clean because even though he was sick if he didn’t present a certain level of socio-economic being, they would treat him terribly in the hospital. And I worried that when people got admitted to the hospital, they wouldn’t be treated nicely because they would be treated like GOMER’s, which was this acronym that came from this incredibly stupid book called the House of God. It stands for “get out of my emergency room.”

People were so cynical about their own practice that they felt that there were people who deserved medicine and people who did not deserve treatment in medicine. And that persists to this very day. Just have a look at who’s getting vaccinated and who’s not, given people who are willing. And think about where money is going and where money is not going. And there’s still that very strong level of stigma and prejudice and inequality in AIDS care and in and in healthcare in general.

Our current situation is very reminiscent of what we went through back then. Obviously, there’s a lot of differences, but there are similar threads to that.

ELLEN: There are many parallels and inequality with AIDS and what’s happened all along with the COVID pandemic. Who has access to care, who has access to education, who has access to services? There are so many pangs of familiarity for us.

There are parallels that are really uncanny for me, seeing it now. After reviewing the charts and going through them, I realize how many of these people, people of color, of lower socioeconomic status, and people who did not have the wherewithal to make an informed decision about their health care are languishing in skilled nursing facilities.

Early on in the book, you write, “as history notes, it was an instance for our tendency as a species to exhibit less than proud moments, in times of doubt in fear” There are a lot of similarities; it rings so true.

VALERIE: Stress affects people in different ways, and we do not always rise to the occasion. I didn’t always rise to the occasion. It’s not like I was perfect. It’s just that I think I had a different view, and I think I’m happy to have been blessed with the ability to see people as human beings and not just as numbers or disease entities. And that’s something that I guess you have to cultivate.

ELLEN: I went back to critical care and the administrative track, and Valerie stayed in research and primary care, but I think not having had that experience back then would have perhaps led me to a different path now. I think it’s so important now that I am a professor for licensed practical nurses.

When COVID happened, nurses walked off their jobs. But looking back at it, when AIDS started ravaging New York City hospitals, health care workers walked off their jobs.

VALERIE: Yes, rather than take care of somebody with HIV, they would walk off the job. This whole comparison between HIV and COVID is one of scale. In 2020, not only did you have nurses fearful for their lives, but they also were working 12-hour shifts for seven days in a row, which is untenable. There was just way too much abuse of the staff that they had.

In the institution where I work, we have roughly 200 ICU beds, and we had to add another 250 ICU beds. That’s all very well and good to add beds, but where do you find skilled nurses to take care of them? Because ICU nursing is not just regular nursing, there are a bunch of other things you need to know. But back in the day, it was in some ways much more shocking because you were talking about people who were willing to give up their good jobs because they didn’t want to take care of one patient. We’re not talking about overloading them with three patients on ventilators. We’re talking about one patient.

If you weren’t willing to take care of patients, they actually met you halfway; they tried to give the assignment to somebody else. And I know because Ellen and I often took the assignments. You do wonder how you go into this kind of profession and not realize that there are sometimes jobs that you’re going to have to do that are less wonderful.

On page 76, after visiting a female patient and Gloria, Ellen, you asked the question, do you think we help? Was that a question that you asked yourself often? And did you ever think about just quitting? Because it’s so emotionally taxing; beyond working in the field of nursing where you’re caring for people who are often physically at their worst, sometimes emotionally and mentally as well. It was at such a large scale; what you were faced with at the time.

ELLEN: Valerie and I talked about this for the duration of writing this book. And when the book first came out, often reflecting on what we did and was there anything we could have done better? Did we actually help anybody? We didn’t save anybody that’s for sure. We didn’t save anybody’s life. I’m not even sure that we really prolonged anybody’s life back then.

This was pre any cocktail, pre-AZT, there was nothing, there was no hope to offer. How do you offer hope in the face of no hope, in the face of hopelessness? I think that we relieved suffering. As I think we pointed out in the book, we walked through the illness with people. We relieved pain; we kept people clean. If they had family that visited, we kept them involved. We tried to come up with different things that we thought patients might eat to gain weight.

I remember we were talking with our dietician friend, and we would come up with all kinds of concoctions. We would buy Carnation Instant Breakfast, the drink. Instead of putting milk in somebody’s cereal, we would mix the Carnation Instant Breakfast in the milk and put it in the cereal, thinking, could we get them a few extra calories to get their nutrition just a little bit better so they could fight off these infections. This is the level at which we were thinking. We had no drugs. We had a little sheet that we came up with the dietician Put mayonnaise on everything, put butter on everything, put syrup on everything.

VALERIE: Use heavy cream instead of milk.

ELLEN: At Lenox Hill, we had a volunteer, and we created a program called Sundays on Tuesdays, and our lovely volunteer went out every Tuesday to the local supermarket and bought ice cream and sprinkles, anything that you could imagine to put on top of ice cream, syrups, and caramels. Anybody that could eat an ice cream sundae had an ice cream sundae that day. Of course, she would offer it to the staff as well, and some of the staff would enjoy the Sundays, too, just to eat alongside the patient so maybe they would eat; because somebody who has no appetite certainly does not want to sit there and eat by themselves. So, the staff would sometimes eat an ice cream sundae just so that the patient would eat the ice cream sundae. But did we actually do anything for anybody?

VALERIE: I think about some of the patients that we had that we thought were getting better, and then they would die. I feel in some ways we were definitely just pushing that rock up the hill. On the other hand, we were very present in everybody’s life, and I think that was the value that we added. People did not die alone. To the degree that we could prevent that, we did, and we had all sorts of ways of doing it, even for the patients that weren’t on 8 East. Ellen’s staff would go visit them, I would go visit them so they would always have somebody see them every day, so they would know they were cared for and were important.

There’s something to be said for care and comfort for people who find themselves in what you describe as hopeless situations.

Was there a fear in the back of your head sometimes that it could happen to me? I could be exposed; I could be infected? You knew what to do; you describe that in the book, I’m a professional, I know what I’m supposed to be doing. But did you ever wonder?

ELLEN: For me, never. Never once did I think that I would get AIDS. My mentor, who was the director of the program, Thomas always said, “If it were that easy to get AIDS, we’d all be sitting around comparing symptoms.”

I had two pregnancies while I was working with people with AIDS. My first son was born in 1988, and my daughter was born in 1990. People would say to me; you’re pregnant? Aren’t you worried about the baby? And I would say, “I’m not having sex with any of my patients, and I’m not sharing any needles with them,” so what’s the problem? I can’t tell you how many times I was interviewed about being pregnant. I’m having prenatal care, and I am not exposing myself to somebody else’s blood. It never occurred to me to be fearful at all.

You also talk about a practical approach to caring for patients and the waste of things like double gloving and gowning. Obviously, PPE wasn’t a thing back then,

VALERIE: PPE became a thing because of HIV. There was no such thing before it.

ELLEN: At Lenox Hill, I actually let people go on staff that were wearing gloves unnecessarily. I said to one of my staff if you’re not comfortable bringing the tray into the patient or holding their hand, and there’s no exposure of bodily fluids, holding somebody’s hand, bringing in a tray, watching television with them, playing cards, etc. I said you can’t work here. And that was it. I actually did ask two staff members to leave because they thought they should be wearing gloves all the time. And I said that’s not acceptable here.

Now we have to wear gloves, no matter what room we’re in, because of all of the resistant infections and germs that have occurred over the decades of using antibiotics. Everybody’s on a contact precaution, so you don’t go into any room without a pair of gloves anymore. But back then, we didn’t want to add any more stigma.

I recall so vividly how the LGBTQ community came together in a way I don’t think we’ve ever seen before. Even with the beginning of the gay rights movement. There was this kind of activism. I remember seeing things on the news, especially in large cities like New York, where the community stood up and demanded something be done. Were you surprised by that?

VALERIE: Yeah, The first research job I had was with a community-based organization called Community Research Initiative, and they were co-housed with ACT UP in Chelsea. So I was very much part of witnessing ACT UP although I didn’t do demonstrations because I was busy doing research. It actually didn’t surprise me too much. I was just really glad to see it because it was time that somebody said to the powers that be we are worth your effort and attention, and you cannot blow us off anymore.

As a result, there have been huge changes for all patients who interact with the medical system. As you may know, if you’ve ever engaged with any medical care, the medical system is very unfriendly to patients. It was very common for doctors to not actually give you a diagnosis or tell you what was going on, or explain what kind of options there were. You just had to do what the doctor wanted and you didn’t have any say in the matter. When you got admitted to the hospital, you had to endure enormous amounts of bullshit and stigma from staff members who would say mean things to you.

I’m not necessarily saying nurses, but all staff members. You had to put up with having yourself discussed in extremely pejorative terms during rounds that were cloaked as being strictly medical, but really, there was a lot of bullshit being tossed around in rounds in those days. And God help you if you were gay, black, a sex worker, or got anything that was not middle class and white. It was just really a hard time for people.

Finally, gay men just stood up and said, fuck no, we’re not putting up with this anymore, and we will keep yelling until we get it. And they got it. And the thing that they got, amongst other things, was a complete change to the patient bill of rights, which may not seem like a big deal to you, but it’s really a huge deal. It gives you actual rights to confront people who may not be treating you properly or giving you the information that you deserve.

Now, if you belong to a clinic, or something like that, where they write notes in an electronic format, you’re actually allowed to see what the doctor writes about you, not just lab results, which happened a couple of years ago. Now you can see your progress notes. And so, people have to really give some thought to some of the crap that they write in progress notes that is really prejudicial to the person who might read it, which is going to be the next doctor taking care of you. In many ways, they said you have to stop treating people like trash and treat us like human beings. Personally, I got down on my knees and said, thank God, because that was a tremendous move forward for all patients.

ELLEN: I don’t know if you’ve read the book that just came out by Peter Staley called; Never Silent? I just finished it, and wow! It’s his memoir; he’s one of the founding members of ACT UP in New York. I just finished the book.

I wasn’t a member of ACT UP; I wasn’t out there demonstrating and getting arrested, Because Val and I were too busy on the inside, taking care of the people, which is where the title comes from. There were plenty of people that were willing to go protest and get arrested and have their voices heard. But we had to stay where we were, taking care of the people.

VALERIE: start the IVs, draw the blood, clean up the poop, do all the stuff that needed to get done that not everybody can do.

ELLEN: Right. If you read the book; Never Silent, by Peter Staley, it will give you the entire history of ACT UP, chapter and verse; all the interactions between him, Fauci, Larry Kramer, and all those people; most of whom have passed on, but some are long term survivors, including Peter Staley.

People assume that because we were taking care of people, we were not activists. I mean, we were activists in regard to taking care of our one-to-one patients or one to two or one to three patients. We were activists for them, advocating for their health and safety as much as we could, but we weren’t out there holding protests.

It’s interesting because the people who got the most press were those that were outside holding protest signs. When Peter Staley had a giant condom put on Jesse Helms’s home, you know, that attracted more attention than Valerie and I by the bedside cleaning up somebody who had pooped themselves. What’s important is that we brought to light what we all were doing when everybody else was out there, getting arrested and getting on the news.

It all came together to form this movement, if you will, that forwarded research and then the agenda of people who were infected or affected by HIV.

And activism takes all kinds of forms, right? It doesn’t mean one is less than the other because they’re all needed and play an integral part.

Do you feel like there was a turning point in that pandemic where you said we can control it, even if we can’t cure it?

VALERIE: For me, it was 1995 when 3TC and saquinavir became the first cocktail, basically. And when we saw the results of that, all of a sudden, I had hope that this was going to be controllable. I didn’t think about cure versus treatment in those days because I was up to my neck in it. In 1995 I had hundreds of patients in the clinic; nobody was getting any better. I was going to five funerals a week, and it was just an impossible situation. And then, all of a sudden, people stopped being so sick.

And then other drugs came out, and all of a sudden, the drugs started rolling in, and by 1998, I got the impression that we might be able to cure this. That’s one of the reasons why I left primary care and went to research entirely because I wanted to be part of the team that found the cure. I left in 1999 and went to Cornell, and that’s what I’ve been doing ever since. We haven’t found a cure yet. But I think we’re so close.

I would agree with that. I think that even COVID is getting us closer in terms of research where we can really look at how we treat viruses and respond to them.

After decades of fighting HIV and AIDS, we’ve made significant advances people can now live with HIV; they can be undetectable. But I often wonder, for those who didn’t come up through the beginning of HIV and AIDS, is there a complacency around it? Because even though there are treatments, that doesn’t mean that there are no complications, right? It’s not an easy path for somebody to live with HIV even today?

VALERIE: I have to say that I straddle that line between wanting to do as much for prevention as possible and also not rip away somebody’s hope when they do in fact get infected because that still does happen. One and a half million people got infected in 2020; what’s going to happen with them? We can’t leave them behind. The prevention methods have been getting much better. Treatment as prevention is one of the biggest ones of course. Treatment as prevention cannot be undervalued because it is such a huge impact on transmission.

As you know, most people who transmit HIV don’t even know they have it themselves. And so part of the problem is what I’m going to hark back to again and again; it is educating people in general. Children learn all sorts of crap about Columbus discovering America, but they never learn a thing about the thing that is most precious to them, which is their own body. They never learn anything about anatomy and physiology, about sexual health. They don’t ever learn about medications and the consequences of drug use. They just don’t ever learn any of that, so there’s no way for them to think critically about it when they get to be old enough to interact with those systems that might want them to have sex unsafely or to use substances for which they just don’t have any idea what’s even in them.

I just go back to education. I think that we could all do better if we would educate all our children about these things so that when they grow up, they can think critically. But there will always be groups of people who are lesser educated. And that’s who’s getting HIV now, people who are lesser educated, who are poor, people of color, both young men and young women who just don’t understand how to make a critical decision about anything. They don’t know about money. They don’t know about education. They don’t know about sex. They don’t know about health. And so, how can we expect them to protect themselves?

The disadvantaged segments of society are so often overlooked and underrepresented. I think they suffer the most. If you’ve got money and have the means, you can get the best drugs and the best treatment. And if you don’t, you won’t.

VALERIE: Right! Will some people who even have the advantages sometimes acquire HIV? The answer’s yes. I’ve been doing a prep study Since 2017, and although we had over 70 people enrolled at our site, we’ve only had two people who actually converted. But why did those two people convert? What happened there? I don’t know. But it was a huge shock, and of course, it was very upsetting for everybody involved, because that was our whole goal, to make sure that nobody got infected.

You can only do what you can do, but if you could get rid of the 1.5 million who were never in a prep program, or who never got any education about how to take care of themselves, or to make decent decisions, then that would certainly pave the way for eliminating aids by 2030, which is supposedly the world’s public health goal.

Tomorrow is World AIDS Day, if you could speak to every young person in the world, and they could hear your message, what would you share with them having gone through this experience,

ELLEN: As far as globally, I would say; as Valerie pointed out so vehemently, we have to educate everybody. Everybody needs to know what’s happening with their own bodies. The other thing that we have to give people options, we have to give them healthcare options. We have to steer them in the right direction.

I’m going to go two ways here. Number one is that we cannot forget what happened in the late 70s and early 80s. They say those who forget or don’t know history are doomed to repeat it. I think that people who are now coming into health care and now consider themselves AIDS/HIV healthcare providers and activists have to know whose shoulders they’ve been standing on for four decades. I think that we have to be aware; it’s like people denying the Holocaust ever existed. There deniers. If you didn’t walk in our shoes, you could not have known what it was like to be there.

Part of the reason why I’m so thankful that the book is out there and being read, and hopefully, being read more and in generations to come, is that we have a certain number of deniers. Just like we have certain politicians that are anti-Vax, and anti-mask, and basically anti-living for people, we don’t want to have the same thing happen with HIV. I don’t want it ever denied again that people shouldn’t have access to education care.

The two things that I would say is, let’s not forget the unfinished lives, those lives that were well lived but unfinished. We have to stop this. The old adage of everything that is important to me I learned in kindergarten: let’s share, let’s take naps, let’s be kind to one another. Those are the basic building blocks of humanity. What we learned when we were little kids; share your toys, wash your hands, and be kind to one another. And that’s the message that I would leave with anybody that I get an opportunity to talk to.

VALERIE: I have a slightly different answer than that because mine would definitely depend on who my audience was. Children are different, the same way that adults are different. And they hear messages in different ways. If there’s any way to encourage people to stay in school and learn about their bodies, learn about what makes systems work so that they can make decent decisions, learn about critical thinking.

That’s not something that is ever in a curriculum; critical thinking, you need to take a philosophy class. I think that we need to be involved with education as parents are; I’m not a parent, I never had any children, but I’m deeply interested in what our children are being taught because they’re going to inherit all of this. So, they have to learn how to deal with it.

And the last thing that I want to say is about the issue of control over our own bodies, that’s something that’s a very big deal. I know it’s a big deal in your state. On the one hand, you have these people who will say; I want sovereignty over my own body. I don’t want to have to wear a mask, and I don’t want to have to take an injection if I don’t want to; but if you get pregnant, I want a say over what happens to that baby. I want a say over what happens to you and your family. I think that pointing out to people their ability to hold to completely incongruent ideas; that kind of crap might be reduced somewhat if we were to teach children critical thinking.

I would agree.

I want to say how appreciative I was in reading the book and that you shared not only your professional experience, going through this and caring for patients, but that you shared pieces of yourself as well. We get a glimpse into your own lives at the time, and I think that’s so valuable. As a reader, I connected with you in ways outside of HIV and AIDS, and you became real people in the same way your patients were. I want to commend you for that because I think it’s always risky to put ourselves out there where people can judge us. That’s very powerful. Thank you.

I think it’s an important story. I believe every young person needs to know, to your point, who shoulders they stand on, so if we can’t eliminate this virus, we can continue to drive it down to the point where it’s affecting fewer and fewer people.

V&E We thank you for engaging with us too. And thank you for reading our book. Thank you, Anthony.

To connect with Ellen and Valerie, and learn more about their book and story, visit their website

Copies of Ellen and Valerie’s book, NURSES ON THE INSIDE, STORIES OF THE HIV/AIDS EPIDEMIC IN NYC can be purchased on Amazon.


This text version of the interview has been edited and formatted for ease of reading and will differ slightly from other versions.

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