Of all the books that I’ve read this year, one of the most important has to be The Great Believers by local author Rebecca Makkai. The book, which comes out next Tuesday, June 19th, centers around Yale Tishman, development director for a university art gallery, his partner and his friends — among them Nico Marcus and Nico’s sister, Fiona — and takes place, alternately, during the height of the AIDS epidemic in 1980s Chicago and 2015 Paris, as Fiona attempts to find her estranged daughter who is now herself an adult. Read on to see what Rebecca had to say about the origins of the book, the book’s structure, the research that went into the book, some parallels that exist between then and now, and much more.
Andrew DeCanniere (AD): To begin with, I have to admit I was a bit curious as to how and when you came up with this story. When did you know that this is a topic that you wanted to pursue and how?
Rebecca Makkai (RM): Actually, it really started off as a story about Nora, the woman who modeled for artists in Paris in the 1920s. I was originally going to have the story be about her interactions with this art guy she was in contact with regarding the work that featured her. It was going to be about her and this kind of back-and-forth about whether he believes her. Then, I realized that if she’d been a model in the twenties, she couldn’t really have lived much past the eighties, and so I decided I needed to set the story in the eighties. I figured that AIDS was going to be a small subplot and it ended up completely taking over both my mind and the book.
AD: It’s also an interesting story in terms of how it is structured, going back-and-forth between Chicago in the 1980s and Paris in 2015.
RM: Yeah. That was something that I think came later for me as well. I wrote about 150 pages just about the eighties, and ultimately I realized that I really wanted it to be a much broader book for several reasons. One was that I did worry about whether I have the ‘right’ to be telling a story entirely about gay men when I’m not a gay man. Originally, I just thought I wanted to try to see if it would help to have another voice in there — a character who is more like me. I also really fell in love with the idea of that timespan of 30 years having elapsed. At first I just wrote about Yale, and then I went back in and sort of wove the Fiona part in there — but of course I had her going back to Paris, because Paris had been a part of the book and I wanted things to come full circle. You know, there was the great aunt who lived there in the twenties, so it’s sort of a pilgrimage for Fiona, even if it is a very fraught one.
AD: And it would seem that there was quite a lot of research that went into the book as well.
RM: Very much. There would be no way to write this without that. I’ve been alarmed reading a few things, after having done my own research. I’ve seen some pretty poorly researched things out there about the AIDS epidemic. I did a lot of reading, although there is not a lot out there in book form at all that is specifically about Chicago and the AIDS crisis. I could research that in a general way, but everything out there is pretty much about New York and San Francisco, which is alarming. There needs to be more about Chicago — and specifically more non-fiction about Chicago and the AIDS crisis which is, of course, not what I’ve written. On top of that, I was able to do some primary source research. For instance, I read back issues of the Windy City Times, which is one of the biggest gay weeklies here in Chicago.
Even more important for me was getting to sit down to meet with people individually who have lived through it, here or elsewhere, who could answer questions for me and tell me their stories. That ended up being hugely valuable. From other people, I was able to get the really specific Chicago stuff like ‘What bars were you going to?’ or ‘What was it like on the AIDS unit at Illinois Masonic Hospital?’ or ‘Where would people go to cruise?’ Things like that. Also, several of those people read the book once it was finished and I made them promise to call me out, not just on factual inaccuracies, but on anything that felt wrong — anything that didn’t quite seem exactly right. It was really important to me that they have that input before the book went out into the world.
AD: I would imagine that it’s always good to have those additional points of reference, people you can turn to like that — especially when you are writing about something that you may have been further removed from than, say, someone who was experiencing it first-hand. Shifting gears a bit, looking at things from the outside, it does seem as though there has been quite a lot of progress in this country — especially in the last 10 or 20 years — and certainly if you compare 1985 to 2015. On the other hand, watching the news lately, I feel like I’m really beginning to question that. I mean, there’s the case that the Supreme Court just ruled on, in which they ruled that a baker has the right to refuse service to a gay couple if he so chooses to do so. Then I was just stumbled upon another story on social media the other day about how, in the wake of the Supreme Court’s decision, there was a hardware store — I think it is in Tennessee — that decided to put up a ‘No Gays Allowed’ sign in their window. So, it seems there is still just such a long way to go and so much more to be done before we, as a society, can say that we have really achieved equality and acceptance.
RM: Yeah. There are horrifying parallels to what’s going on now — both in terms of a resurgence of people feeling like they have license to express bigotry, and also the stuff that has never stopped in terms of how insurance companies and big medicine are able to treat marginalized people. It changes based on the epidemic, whatever it might be — whether it’s the opioid epidemic or it’s the crack epidemic in the eighties, or whether it’s women’s medicine or it’s health issues for trans folks or it’s something like AIDS. At first, AIDS was seen primarily as a gay disease, and it has very much turned into the disease of poverty, and it inordinately affects communities of color. It’s about the ways the government and the medical community, at it’s worst, can really conspire against entire populations of people to make medications or sick leave or whatever it may be unaffordable. That stuff has never gone away. It changes from time to time, but someone is always getting screwed over by the way we handle healthcare in this country.
AD: It’s unfortunate, and it’s shameful, and it needs to change, but I have to agree. Not that healthcare providers don’t continue to make judgments about people when they shouldn’t make them — at least some healthcare providers continue to do so, certainly not all — but it seems like it was pretty common for healthcare providers to pass judgment on those in the LGBTQ community during this period of time.
RM: Oh, yeah. I say this in the book, but when AZT came on the market, it was the most expensive drug ever sold. That has nothing to do with how much it costs to make it. It was entirely for all of the worst reasons you could think of that it was so expensive. It was greed. It was prejudice. It was just unconscionable that this would be the drug that they would do that with. It makes me angry. ACT UP fought very hard and they successfully got the price of AZT reduced somewhat. I don’t think that I needed to work very hard within the book to lay out details on which people could quite easily see the parallels to what’s still going on today.
AD: Right. They were literally imposing their views on other people. They were literally saying that if you behaved in a way that, based upon their view of the world was ‘wrong’ or ‘immoral’ or what have you, it was okay for them to die. That’s completely unthinkable and unacceptable to me. If you’re passing judgment on people and you’re deciding who should live and who should die, I don’t think you should have a license to practice medicine.
RM: That’s exactly it. I think that sometimes it’s couched in bureaucratic speak, and that makes it sound as if it’s not personal. It was just absolutely disgusting and horrifying. You know, there were people who were coming out and saying that this is ‘the wrath of God.’ I think, mercifully, that kind of language became unacceptable, as it should be — but I do worry about what people once again, in the last couple of years, are starting to feel like they have license to spew.
AD: There do seem to be those who, once again, seem to feel it is acceptable to be unaccepting. I think there are some who might use the term ‘intolerant,’ but I don’t even like to use the term, because I don’t think the goal should be to tolerate someone who is gay, lesbian, bisexual or transgender, or whatever the case may be. I think people need to be accepting of them. To tolerate implies you are willing to put up with them, but you don’t really accept them as they are. So, I’ll say some people do seem to feel free to be unaccepting again.
RM: It’s something that breaks my heart. I will say that a lot has changed from 2013, and as things were changing, it gave me a great sense of purpose and solace to be working on this book. You can feel like it’s all for nothing and you’re alone in your office with your fiction — like I’m just hanging out with my imaginary friends. They’re not really going to be able to change the world. Now, with the book getting out into the open, and being able to talk about it — knowing that people are reading it — at least it feels like something.
AD: I could definitely see how it would get people thinking and really considering both what they themselves are doing and what’s happening around us.
RM: Yeah. I want to say, having spent much of late 2016 and early 2017 — which was kind of the height of my research — really sitting down with people in person, those conversations really got me through the election and the immediate aftermath. Just talking to those people — who, granted, now feel once again completely in danger — but who’ve lived through stuff before and have a bit of a long view on the cruelty of government and on protests and on direct action. So much of what we know about direct action comes from ACT UP. They were wildly successful.
AD: Actually, that’s the perfect word for it: aftermath. At least to my mind, you think of something like a tragedy — a natural disaster or something. So, using that word in relation to the election seems completely appropriate, given how things played out and who got elected. Quite frankly, it does seem like a bit of a disaster.
RM: It’s an ongoing disaster. Maybe one day we will be in the clean up process, but we’re certainly not there yet.
AD: Aside from the judgment and the lack of acceptance by society at large, I think you really see the damage that was done within families, too. The damage done by being disowned for who you are and the lack of a support system that results from that.
RM: The novel starts with the memorial service that is happening at the same time as the funeral mass of a friend who all of these people have lost, and they have not been invited to the funeral mass. As a result, the guy’s own sister is boycotting it and is there with his friends at this other location. It’s a very real thing that absolutely happened. That was a good entry point for me, as a writer, to start thinking about chosen family — which is, in many ways, what the book is about. There are many failed nuclear families in the book — and one pretty successful, large chosen family, this group of friends. Chosen family can’t replace nuclear family, you know? It doesn’t undo that damage that was done to you as a child, and these people are constantly living in the aftermath of pretty extreme rejection, in one way or another. I was really interested in the psychology of that and how that would affect their relationships with each other, their trust levels, and the tendency — when it comes to some of the characters — to self-sabotage. A lot of that psychology, of course, is stuff that I got from talking to other people, but a lot of it was just that writerly act of putting yourself in someone else’s shoes and trying to feel what it would be like to only have your friends, and then your friends start dying.
AD: Right. Fortunately, I feel like I have a good relationship with my mom and my sister, but I also feel as though, in many cases, the family that you choose really can be closer than your own biological family.
RM: Absolutely and I think that, historically, for many straight people, that has been a matter of being able to go and start a new nuclear family. Right? It’s like ‘Now I’m allowed to get married, and now I have my kids with my husband, and that’s my new family, regardless of any relationships with my birth family.’ That’s certainly complicated — especially 30 years ago — for these guys who definitely weren’t allowed to marry, and who certainly wouldn’t have been adopting children back then, for any number of reasons I won’t try to explicate. There was less codified stability within the gay community within that ‘I’m an adult, I’m going to make my own family now.’ It’s really much more about friendship — groups of friends and relationships, but those friendships and those relationships are going to be hugely damaged, not just by death, but by the stress of the epidemic.
AD: I was just about to say that the part that’s a bit unusual is that the people you choose hopefully do not then proceed to die — and certainly not in large numbers, as they did in the gay community.
RM: Right. The only precedents that I can think of for that are times of war. That’s where I end up making parallels in the book with the generations around World War I in Paris. Of course, the title of the book comes from a Fitzgerald quote about the Lost Generation. However, I’m writing it about people of the same generation as the visual artists who got to Paris before World War I and made these chosen families, and then those lives were interrupted by the devastation of World War I as well as the influenza of 1918. That’s something that’s really at the forefront of the book — the relation between those two eras. But that’s really the only other kind of precedent you can find for something like that — at least in the modern era. Times of war. And, in so many ways, the AIDS epidemic here in America was a war.
AD: While I think it’s not necessarily something that people would think of off-hand, I think you can definitely see the parallels.
RM: It was really interesting for me to draw those connection — to have Nora, this character who’s been a part of the previous generation, talking to Yale and really being the only one who could offer him perspective and understanding on what was happening to him and his friends.
AD: And aside from the people who were diagnosed themselves, you also see this profound effect on those who were acting as caregivers of those who had been diagnosed with AIDS. For example, there’s Nico and Fiona. Fiona ends up not only looking after her brother, Nico, but she also ends up in this caretaker role for others who have been diagnosed with the disease. She’s kind of watching all of this play out — all of these people who are also her friends are dying in front of her. So, I think there is this huge impact on her as well.
RM: Right. Late in the book, Yale says to her that she’s been through a war and no one is going to give her a Purple Heart. I think that this was a very real situation. It was really interesting for me to deal with someone like that and then push her, in the modern day — through what’s happening to her in 2015 Paris — to the point where this would be the time when she really had to start dealing with the trauma of her past that she’d been pushing down for the past 30 years.
There are so many people whose lives have been permanently affected by the trauma of AIDS who are walking around. Yet, there are people with whom I will discuss what I’ve been working on, and they’ll give me this look like they’re remembering some obscure band from the eighties or something. They’ll say things like ‘Oh, gosh. I remember that time,’ as if it was just a little blip on the radar. It’s odd, because when I was young, I didn’t know anyone personally at the time who was affected by AIDS — though I know plenty of people now — but, as a kid, it felt like the biggest thing that happened in the history of the world. Of course, it was a kid’s perspective, but it never went off of my radar for half a second. It’s amazing to me how very quickly it seems like we, as a society, pushed this aside and that we aren’t constantly still talking about it, because it is absolutely still affecting so many more lives than you would think — not just the people who are still living with HIV. The other side of it has been for me that, in talking about this book — if, for instance, I’m doing a library event — three or four people will come running up afterwards to talk to me about their brother, or about how they were in the dance community in Chicago back then and lost all of their friends, or they were a nurse. Often, they are women. And they are very anxious to talk about it. So, that’s been fascinating to me, too.
AD: It seems like it’s really connecting with people. I don’t know about you, but I don’t think you can really stay away from politics when talking about this subject. It’s inherently political, and it seems to me that Ronald Reagan and George H.W. Bush, in particular, are culpable. They are, like it or not, in many ways responsible for how things played out during their time in office. They both played a significant role in terms of the response or, more accurately, the lack thereof.
RM: Very much. There actually was some debate about when Reagan first said the word ‘AIDS’ in public. It depends on what you count as public. Depending on which incident you’re counting, he either didn’t say it until 1985 or 1987. That’s horrifying. There were tens of thousands of dead gay men by the time he deigned to say the word ‘AIDS’ in public. It was not a funding priority for that administration — or, really, any that followed. Even Bill Clinton had to be pushed hard on it early on. Other countries had much better responses. If you look at what happened in England, it was a combination of the government being much quicker to deal with it and of a lot less stigma, because there wasn’t that puritanical stigma to the same extent against being gay. There wasn’t that feeling that it was the wrath of God. So, people were much more likely to talk about it, people were much more likely to get tested, and they were much more likely to admit when they were sick. They did not have nearly, proportionally, the problem we had here. The same with Paris. It was absolutely murder by neglect that was happening here.
AD: As horrifying as it is to think about how badly mishandled the entire thing was here, from those at the very top on down, I am glad to hear that they took a much more enlightened approach to it in some other places. At least it sounds like it.
RM: We’re a much more puritanical country than we would like to admit we are, right? There was a hard time getting past that for a lot of people. That shame and that silence played a big part in the spread of the disease. The early ACT UP logo, ‘Silence Equals Death,’ was really the message there. You know, our ignorance or refusal to talk about this is a big part of what was killing people.
AD: Right. I think that, by and large, society has become much more accepting — not to say everyone is. You watch television and pop culture would have us believe that so much has changed, and to a certain extent it has, but even today, there still does seem to be this segment of the population that is still bigoted, still prejudiced. Again, I refer you to the Supreme Court’s recent ruling I mentioned or that hardware store I referred to earlier.
RM: Very much. And it’s hard to get past that, but a whole lot of it was religious leaders and politicians coming out and saying the things that someone might have feared in their heart of hearts. When you are sick, the thing you need to be told is ‘It’s not your fault,’ because there’s a part of you — no matter what you’re diagnosed with — that is going ‘It’s my fault. I did something wrong.’ So, for people to then come out and scream about it in peoples’ faces, when what they needed to hear is that it’s not their fault — as we all do if we fall ill — is the exact opposite. What does that do to their psychology? What does that do to the psychology of an entire community in terms of their willingness to get tested? What does it do in terms of their willingness to talk about it? It was a massive national failure.
AD: I agree completely. There really is no other way to put it and there definitely was no excuse for it. Speaking of all of this, it does seem there is a sort of parallel between healthcare — or lack thereof — during the height of the AIDS crisis and today, particularly with the Trump administration’s disbanding of the HIV/AIDS Advisory Council. From my point of view, it’s pretty worrisome in terms of where this administration’s priorities are.
RM: I don’t think we need to worry. I think we know. I mean, what’s there to worry about? It’s bad. One of the first things Trump did was to dismantle the remaining HIV/AIDS Commission and pull out of the international Aid for Africa, where a million people are still dying of AIDS every year. That’s no accident. He is appealing to his base, who don’t want to spend money on those they perceive to be HIV patients. It’s completely horrifying and fortunately we’re past the crest of the epidemic. That’s a helpful thing. He would’ve done more damage if he’d taken office in, say, 1992, in terms of the impact on HIV and AIDS. One of the lessons of this epidemic is that you don’t know when something is going to happen. You don’t know when things are going to come back, and it’s typically going to be vulnerable and marginalized communities that are hit by whatever crises we have. So, it’s scary not just for what this says about people living with HIV right now, but about the way that any health crisis — any marginalized people and their healthcare — would be treated by this administration or, honestly, by the party as a whole.
AD: It really is frightening that we have a man in office who is so indifferent to the plight of so many. It feels as though he doesn’t really think about the people or how spending — or, again, a lack thereof — is going to impact others.
RM: Right. And, honestly, spending on helping certain people probably doesn’t seem as expensive to him as it does to help certain other people.
AD: Right. It seems as though he doesn’t see any value to spending money in certain ways — or, rather, on certain populations.
RM: And I think the base of that party doesn’t, either. That’s the issue.
AD: Last but not least, switching gears a bit, I always find it interesting to know what an author, whose work I enjoy, has been reading. What have you been reading lately or what might you recommend?
RM: There’s a book that’s going to be out in September called The Caregiver by an author named Samuel Park. He actually passed away very young — a couple of years ago — and it was the book he finished right before he died. He was a Chicago author who taught at Columbia College. He himself was dying of stomach cancer when he wrote the book and it is, in part, about a woman dying of stomach cancer. It’s also about a lot of other things. It’s about Brazil and all kinds of other things, but there is a lot of interesting stuff in there about death and dying and I think it’s a really fascinating read. It’s a beautiful book and I really want to recommend that to everybody.
Rebecca Makkai is the author of The Borrower, The Hundred-Year House, and Music for Wartime. Her work has appeared in The Best American Short Stories, Harper’s, and Tin House, among others. She lives in Chicago and Vermont with her husband and two daughters.
You can find out more about Rebecca, her novels, her short stories and upcoming events — as well as her forthcoming novel, The Great Believers, which will be available from Viking in hardcover, as an e-book and as an audiobook, on Tuesday, June 19, 2018 — by visiting her website. You can also find Rebecca on Facebook, Twitter and Instagram.
Additionally, you can find my 2014 interview with Rebecca regarding her novel, The Hundred-Year House, by clicking here and my 2015 interview with her regarding her short story collection, Music for Wartime, by clicking here.
About the #TheGreatBelieversDonate Campaign:
#TheGreatBelieversDonate campaign is a campaign that aims to give back to the community that inspired the novel. If you post a photo of your book to Instagram, Twitter or the author’s Facebook page between June 19th and September 19th using the hashtag #TheGreatBelieversDonate, the author has pledged to donate $1 per post (up to $5,000) to the Heartland Alliance’s Vital Bridges, a food pantry for those with HIV/AIDS in Chicago.
For more information on the #TheGreatBelieversDonate campaign, as well as a list of other organizations that could use your support, please click here.
As of press time, upcoming events in the Chicagoland area include the following:
June 26, 2018 at 7:00 PM
Women & Children First Bookstore
5233 N. Clark St.
Chicago, IL 60640
September 11, 2018 at 6:30 PM
The Book Stall
811 Elm St.
Winnetka, IL 60093
September 12, 2018 at 7:00 PM
The Book Cellar
4736 – 38 N. Lincoln Ave.
Chicago, IL 60625
September 18, 2018 at 7:00 PM
The Book Table @ The BeerShop (Oak Park)
1026 North Blvd.
Oak Park, IL 60302
Bookstore Telephone: 708-386-9800
Bookstore Website: www.booktable.net
September 20, 2018 at 6:30 PM
Lake Forest Bookstore @ The North Shore Distillery
13990 Rockland Rd.
Green Oaks, IL 60048
Bookstore Telephone: 847-234-4420
Bookstore Website: www.lakeforestbookstore.com
For a complete listing of events, including events taking place outside of the Chicagoland area, please click here.