Caroline Leavitt, WITH OR WITHOUT YOU

Zibby Owens: I had such a nice time talking to Caroline Leavitt. She is a New York Times best-selling author of twelve novels, many of which have been on the best-of-the-year lists. She's also the cofounder of A Mighty Blaze, which is the initiative that helps authors and bookstores, and just was formed during the pandemic. It's been written up in The Boston Globe, The Washington Post, Vox, NPR, and more. Her twelfth book, With or Without You, is just coming out and received a starred review from Kirkus and raves from many other publications. As a screenwriter, Caroline was a Nickelodeon Screenwriting Fellow Finalist, a first-round finalist in the Sundance Screenwriting Lab competition for her script of Is This Tomorrow, and has many, many other prizes from the National Magazine Award and an honorable mention for the Goldenberg Prize for Fiction from the Bellevue Literary Review. She's just amazing. She's appeared on The Today Show and many other TV shows and all the rest. She lives in Hoboken, New Jersey, which she calls New York City's unofficial sixth borough, with her husband and has an acting student son named Max. I should also say she founded A Mighty Blaze with author Jenna Blum.

Welcome, Caroline. Thank you so much for coming on "Moms Don't Have Time to Read Books."

Caroline Leavitt: Thank you for having me. I'm really excited. I love your podcast.

Zibby: I feel like I've been just so in awe of what you've been doing since the pandemic started with A Mighty Blaze and all this stuff, how you're helping out all these authors. I just love watching. I've been trying to help as well. I am so inspired by what you guys are doing.

Caroline: Thank you so much. I grew up being the Pollyanna of my family. Where something was wrong, I was always determined, no, I'm going to fix it. When the pandemic happened, I had a big event. My first event was at this library association in Texas. They canceled it. I remember walking around the house saying, no, nothing is canceled, nothing is canceled. I put the word out to authors that, don't worry, nothing's canceled. I'm going to put all of you on my blog. Just make me a short video. Shout out another writer. Shout out an indie bookstore. All of a sudden, I was inundated. I got more and more inundated. Then The Washington Post called me. I said, "I don't know what I'm doing. I'm just sort of doing it." Then lucky for me, Jenna Blum called me up and said, "Do you want to partner with me on this?" I said, "Yes, thank god. Yes." Then it blew up even more. We have a staff of twenty now, all unpaid.

Zibby: No!

Caroline: Yep. Everybody's unpaid. Everybody's passionate.

Zibby: I said no about the fact that there were twenty people, not about the unpaid. That's also very impressive.

Caroline: Yeah, there's twenty people. We need more. We actually need more. It's just so overwhelming that I feel like -- Jenna and I always say we're just two women writers in yoga pants. We're flying a plane and we have no idea how the plane works. It feels good to do something. It's also really fun to connect with other writers and to help.

Zibby: I get that. That's amazing. Wow. Good for you. Now I have to figure out how to get anybody who helps me to do it free. [laughter]

Caroline: Begging works.

Zibby: Begging, maybe I'll try that next. Mighty Blaze aside, which everybody who's listening should go check out right away and see amazing author conversations all the time and everything you guys are doing, but let's talk about With or Without You, your new book coming out which was so good, oh, my gosh. I've been reading it in my bed night after night on my iPad in the dark with just the light of my screen keeping me company. It's been really great. Now I feel like I'm in this coma-like alternate universe that you're trying to create here.

Caroline: It's the whole alternative universe. That's the thing that's so interesting. When I started to write this book, I just thought, I'm going to write about a coma because, actually, I was in a coma. Unfortunately, when I was in a coma, or fortunately, they had me memory blockers, so I didn't remember anything about what happened at all. Nobody thought I was going to survive, so they thought, that's okay anyway. But I did survive. I did get well. The thing is my brain didn't remember anything, but my body did. I would walk in a supermarket. I'd be with my husband. I'd see a package of soup and I'd break into a cold sweat and get into a panic attack, say, "What is this?" Jeff would say, "That's the only thing you would eat when you came out of the coma." I just didn't remember. The other problem was that anybody who was around me at the time, all my friends and family, when I asked them what happened, nobody wanted to talk about it because they were so traumatized too. I thought, how am I going to get through this?

One of my friends who is a psychologist said, "You know what? You can create a memory. You're a writer." It's like hypnosis. If you tell somebody in hypnosis, you're burning up, welts will appear on their skin. The brain doesn't know the difference. He said, "Create somebody and live through them. You'll feel better." I started doing all this research on coma. To my surprise, the most interesting stories were about all these people who actually got better. They became better people out of coma. One woman woke up, and she had never played a note, and suddenly she was playing the violin perfectly. She went on to play concert halls. This other guy woke up speaking fluent Mandarin. He quit his job as a computer specialist. He moved to China and he became a translator. My favorite was this guy who woke up and he thought he was the actor Matthew McConaughey. Nobody could disabuse him of it. They showed him a mirror and said, "Look. Here's you. Here's a picture of Matthew." He said, "They're both me." He kept saying, "When is my agent going to call? Will you call my agent?" It took him six months to finally realize that he wasn't even though part of him still really felt that he was. I thought that that was so fascinating. I thought, I want to write about that, about somebody who totally changes and there's this whole other world and how it impacts her and how it impacts the people around her. That's how the book came about. It did heal me. It did make me feel so much better. I still have some triggers. I'm still really afraid to go to sleep at night. Other than that, other stuff is fine. I was able to get away from that.

Zibby: Let's back up. I know the story because I read your amazing piece in The Daily Beast about what happened to you. Had I not, I would not know what you are talking about. Tell me, go back to what happened and how it was right after you gave birth and the rare blood thing.

Caroline: I had a perfect pregnancy, perfect easy delivery. The day I was supposed to go home, I took a shower in the hospital and I noticed that my stomach was really hard and really big like I was ten months pregnant. The last thing I remember is saying to the doctor, "Look at this. Isn't this weird?" He said, "Well, you had a C-section. It's probably just a blood clot. We'll just do a little operation. You can go home tomorrow." I said, "Fine. That's fine." The next thing I remember is, it was really terrifying. I do remember waking up and I thought I was in a TV show, that reality had changed, because everything was in black and white. I heard a soundtrack and a laugh track. I was in this big tall building. It was all steel. On the wall there was this big, huge photograph of Max, my baby. Underneath in my husband's writing it said, "Get well soon, Mommy. We miss you." I must have tried to get up because all of a sudden everything went black again. The next thing I remembered is I woke up again. The things were in color. Again, I thought it must be a TV show because there were all these doctors and people around me saying the cliché, "Do you know what day it is? Do you know what happened to you? Do you know your name?" I kept saying, "Yeah. What's going on?"

They told me that when they took me down to operate on the clot, they said it was like The Shining, they opened me up and all this blood just poured out and out and out. They didn't know what to do, so they put me in a coma. For two weeks, they kept doing operations to get the blood out. Nobody knew what was going on. They all thought, she's dying and we don't know why. She's just bleeding, bleeding, bleeding. Finally, they had this little German hematologist who was about to retire. She was literally like four feet five, about to retire, seventy-eight years old. She said, "I think I know what it is. It's this really rare thing, but we have to do a test because the treatment for it is so brutal." The hospital, which was NYU, said, "That's a really expensive test. We don't want to do it." My husband said, "I will pay for it. Do the goddamn test." They did the test. Sure enough, it showed this protein. I don't want to scare any pregnant women out there because it’s very rare and they do have treatments for it now. But apparently, once you have your baby, your immune system is getting back together and there can be this very rare glitch where your body produces this protein which stops all your blood from clotting, like everything, your brain, your eye, your hips, your this, your that.

Once they found that out, the way they treated this, they gave me hundreds of transfusions of factor VIII, which is the protein to stop it. When that didn't work, they had to give me this other transfusion of this poisonous thing. They took me down and they had to glue my brain, not my brain, my veins shut so the bleeding would stop. Through all of this, I was on really heavy doses of morphine. While I sort of understood what was going on, I was hallucinating madly. At one time, I thought Madonna was in my room. I kept asking her to leave. Another time, I honestly thought that the hospital was a sex clinic and that they were coming to do stuff. I was screaming at the doctors, "I can't participate. I can't participate. I'm sick. I'm sick." The worst thing was that while I was hallucinating, they didn't want me to move because they were afraid if I moved I would hemorrhage. If I didn't move, then all my muscles would atrophy. It was always this weird thing. I was on the morphine and in the hospital for two months. The coma was two weeks. Hospital was two months, I believe.

They wanted to keep me in the hospital longer, but insurance refused. By then, my bills were over a million. Insurance said, "No, we can't pay for that. You can go home and we'll pay for a private nurse." I came home, had to stay in bed. Had a private nurse. Still was under so much medication that time was so fluid. I didn't know if I was in the present or if I was in the hospital. Everything was setting me off. It took me about a year to get physically better where I could walk and hold my baby and all this other stuff. Then I started getting all the post-traumatic stuff. All the triggers started coming. I didn't know why. Nobody would talk to me about it. The message was always, you know what, be glad you're alive. Everything is fine. This is never going to happen to you again. I still had to go to doctors. I had to go back to the hematologist every day for five years.

Zibby: Oh, my gosh, every day for five years?

Caroline: The thing is with hematology, those are really sick, sick people. I would walk in and I would feel like, well, I'm walking. Here all these people. They looked really, really sick. I finally said to the hematologist, "I can't do this anymore." He said, "You have to. You were so, so sick." I made a decision that I was not going to go back, and so I never went back. [laughs] My husband was not happy about that. The hematologist obviously was not happy about that. I kept saying, "Look, it's been five years. I'm fine. Nothing's happened. I know what it feels like to be sick. If anything happens, I will come back." He finally called me and said, "Okay. Look, the only reason I'm saying okay is because --" they actually found a new cure for it. Well, not a cure, but a new treatment. They can rid get of it really quickly. That was like ten years ago. I've never been back. I never will go back. I never want to go to a hematologist ever, ever again. I'm fine now, but I do know that I do have this thing that still lives in my body. The only way it can ever come back is if I get repeated bouts of the flu or a cancer. I'm a little worried about COVID, but I've been okay for so long that I just feel I'm going to be okay. I'm going to be okay. It's not a problem. That was what happened. It's called a factor VIII inhibitor. It was really, really rare, but I got through it.

Zibby: How was it to also be a new mom at that time?

Caroline: It was terrible. It was terrible because when I was in the hospital, they would not bring the baby in. I finally told them, "If you don't bring the baby in, I'm not going to let you take blood. I'm not going to take transfusions. I'm going to refuse all treatment and I'm going to scream." I was near hysterical. They finally said, "All right, all right." They brought the baby in. It was so strange because he was this tiny little stranger. He didn't know me. He didn't know who I was. He was very upset. He was looking for his dad. Jeff said, "Don't worry. Don't worry." Jeff took videos of the baby. He brought them in for me. The nurses, who were just amazing, gave up their breakroom for us. They said, "You can watch the movies in here." All the nurses gathered around me and Jeff to watch these movies of my baby. It was his first bath and all his other first things. I sat there crying just saying, "Thank you. Thank you. Thank you." When I got home, I was not allowed to pick him up because they were afraid that there would be another bleed. They would bring the baby in to me every day so we could get to know each other. It was very hard for me because it took a really long time for him to bond with me. He was always looking for his dad and always looking for the baby nurse.

Then finally one day, it was like six months in -- I can't believe I'm really emotional about this. Six months in, he was laying beside me. He just looked at me. He put his little hand on my face. I thought, okay. Then we bonded after that. He's twenty-three now. We began this intense, intense bond and love affair, and everything was fine. Before that, it was really, really hard because I kept feeling like, what happened? I had read every single book about parenting, what you're supposed to do the first three months and all this stuff. Every day, I was carrying him. I used to sing to him and talk to him. That was hard. That part was really, really hard. The other part that was hard too was that I actually looked like a totally different person because I was on high doses of steroid. I really looked like I was way, way overweight. My skin turned gray, literally gray. I lost all my hair. I didn't want to go out of the house. My husband just lost his job because they said, "You're spending too much time taking care of your wife and your baby." Our money was dwindling. I thought, I have to get a job. I was doing fashion copywriting then. I called all my friends and said, "Please, if you have any work." One of my friends who worked at Victoria Secret said, "I will give you a fashion book to write. Ten thousand dollars, you can do it in your sleep. Just come in and pick it up." I said, "Please don't make me come and pick it up. Can you just send it to me? I look really different and it's going to be terrible for me." She said, "Oh, no, don't be silly. Don't be ridiculous. Nobody cares."

So I had to go in there. The only thing I could fit into was this muumuu. It was this red muumuu dress. I put it on and I thought, what am going to do about my head? I put this schmatter on my hair. I tried to put on makeup. With gray skin, I looked ghastly. I got on the subway. This was Manhattan. There were these teenager girls there. They were snickering at me. I thought, oh, my god. I felt like, this is okay, I can do this. I got to Victoria's Secret. Of course, everybody working there was young and beautiful and thin and wearing gorgeous clothes. Here I come in a muumuu and a schmatter on my head. They looked at me. They said, "We'll go get Katherine." Katherine came out, and I saw her face change. I saw her face literally go from [facial expression] to [facial expression]. She came to over me and she said, "Oh, I'm so sorry. I should've told you the project was canceled. I can't give you the work."

Zibby: No!

Caroline: Yeah, she did. She said, "The project was canceled." I said, "That's okay." I was really polite. Then I went home and I just cried and cried and cried. In a way, it was a good thing because it made me realize that, you know what, I am never ever going to, not that I did, but I'm never ever, ever, ever going to make anybody feel weird about their appearance ever again. I'm always going to compliment people. I actually started this thing afterwards where every day I would say something nice to someone on the street, especially if it looked like somebody who didn't get many compliments. It was a really old lady, I would say, "Oh, my god, your hat is so cool," or "Where'd you get those shoes?" or whatever just to feel like I'm erasing that memory and supplanting it with good memory. It was actually an interesting thing because it took me about another year to get back where I looked like I had. I lost a lot of all my obsessions about, I don't have the right lipstick or my hair looked stupid. I was just so glad to have hair coming back in and to be able to fit in my clothes that it changed me. That's what I wanted to write about. You can have these incredible changes in your life. They may seem terrible and tragic at the time, but actually, they create goodness. These really profound, amazing things can happen and change you for the better. I feel like that's what happened to me. That's what I wanted to give my characters.

Zibby: Oh, my gosh, what a story.

Caroline: [laughs] I know. I've got tissues.

Zibby: Thank you for sharing it. I can't believe you had to go through that and that you can sit here and talk about it twenty-some-odd years later and it still is just as raw. It's just awful. The body is so weird.

Caroline: Yes, the body is very weird.

Zibby: Unless something goes wrong, you don't think about it that much. Then as soon as things go off course, that's it. I know that's such an obvious thing to say, but it blows my mind to hear stories like yours. My heart goes out to you. I can feel the pain from that time. Oh, my god, I'm so sorry.

Caroline: Yeah, but tragedy lives besides comedy and happiness. That's the weird thing. I'm a really, really happy person. Outside of what's going on with the world and the pandemic and all that stuff, there isn't a day that I don't wake up and think, oh, my god, I'm so incredibly lucky. I'm so grateful. I'm really happy. I think part of why I can be happy is that I put a lot of the tragedy in my books, so it sort of leaches out of there. I have a very positive worldview. I think that's how you get through these terrible things.

Zibby: You're absolutely right. When you're writing, does all the emotion -- are you crying? Are you in it? Are you just feeling all the feelings as you're typing? Does it all just come out and then you shut down the computer and you can walk away and be okay? What is that like?

Caroline: It is like that. It's exactly like that. There's some scenes when I had to write I knew, oh, my god, I don't want to write this, I don't want to write this. I did not want to write Stella in the coma because it felt a little too close. That took me a few weeks to get into that. Then once I did, I go into the zone where my husband could shout out, "The house is on fire. We have to leave," and I wouldn't hear. I was very, very deeply in the zone. Then as soon as I stopped, I felt a little better. Usually, what I have to do when I stop writing something like that is I go online and I look at ten celebrities who had bad plastic surgery or something like that just to get me in the right frame of mind. Then I'm fine for the day. Then I'm like, good, that part's done. Now I can move on.

Zibby: I read somewhere that when you wanted to write With or Without You, because you had already written a book involving someone in a coma, your agent had told you, "Not another coma book." Is that true?

Caroline: Yes, she did. My agent is Gail Hochman, who's wonderful. She's very blunt. She's wonderful and helpful. She will say things like, "Really? You think people want to read about that?" [laughs] When I told her about this book, she said, "Really? Another coma?" I said, "Gail, this is different. This is really different." It was different because the first coma book was right after the coma. It was very close to a woman who didn't remember anything. It was more about her and her husband. When I wrote it, I felt a little bit better, but obviously I didn't feel healed because I still was thinking about it and thinking about -- I'm sort of a quantum physics junkie. I love the whole idea that there is no time, that it's manmade, that everything sort of exists in the same period. Maybe you can access it and maybe you can't. I kept thinking, that's interesting. I'm going to try to access this coma and do it again and see how it makes me feel and how it makes my character feel.

I just got immersed in it. I just found it so completely fascinating. I wanted to put the spin on it about that people could get better. The first book was mostly about, no, it's a terrible thing and thank god it's over. This book was more about the wonder that the brain is very fluid. I have this friend, Joe Clark, who's at the University of Cincinnati who does research on comas and neurology. We talked for hours. He's just so brilliant. I would ask him all these questions like, "Could somebody go in a coma and come out and would they have the ability to heal?" He would say, "They might." I thought, wow, that's so great. I want to know more about that. His whole thing was that the brain is very weird and we don't understand everything about it. You can literally become a different person if the neurons are firing in a certain way. I wanted this book to have a sense of wonder. I really did. I wanted it to be more like, wow, this is amazing, whereas the first coma back was more like, oh, what a tragedy. I prefer the wonder to the tragedy.

Zibby: Stella's not the only character who changed. Her partner changed so much. Watching his trajectory while she was in the coma, even, was really significant with how he started realizing what was important and all the rest, making all these career changes and everything.

Caroline: The funny thing was that took me by surprise. I really didn't think that I was going to be writing about fame and what it means and this and that. I was thinking a lot about it. What does it mean? In the writing community, it means so many different things. I don't know if you knew my publishing story, but it's very weird. My first novel, I was a sensation. I was flavor of the month. I was really young. I was twenty years old. I thought, oh, it's always going to be this way. Of course, it wasn't. My second book, my publisher went out of business. Third book, publisher went out of business. Fourth book, went to a big publisher. They did no publicity, so the book died. Next publisher had a three-book. Again, no publicity. Then I wrote this book. It was my ninth book. It was on contract. My then publisher said, "We're not going to publish it. It's just not special." I said, "What? Can I make it special?" She said, "No, we all here don't think that you can." I said, "Will you look at another book?" There was a silence. She said, "No, I don't think we want to."

I hung up the phone. I called my agent sobbing saying, "This is my nineth book. Nobody knows who I am." Nobody knew who I was. I had terrible sales. When I got reviews, the reviews were great, but I would get two reviews, maybe. I said, "What publisher is going to want to take a chance on me?" She said, "Don't worry. We'll figure it out." I happened to have a friend who was at Algonquin. She said, "I love my editor. I bet she would love your book. Can I show it to her?" I said, "Yeah, but nothing's going to happen." This editor called me up. She said, "I really loved your book." I felt like I had to be honest. I said, "I have to tell you, I don't sell books. Nobody knows who I am." She laughed. She said, "They're going to know who you are now. You're going to sell books. We want to buy it." They bought the book for a small amount of money. I was thrilled. They took that non-special book and they got it in six printings before it was published, made The New York Times best-seller list its second week out, became a Costco Pennies Pick. All of a sudden, all the people who had never returned my emails or my calls were calling me, including the editor who had said it was not special who wanted to know if I wanted to come back.

Zibby: No!

Caroline: Yes. I have this very weird view about fame now. You know what? It's nice when it happens. It's wonderful when people respond. When it doesn't, it doesn't necessarily mean anything because all of those other books that did nothing, I still think they're good books. I just think the timing was wrong, whatever was wrong. I'm doing okay now, but who knows? Maybe this book won't sell or the next book won't sell or it'll take me four more books to do it. I don't think about that anymore. I think more about the pleasure of getting to write. I just feel it's much more important to have that kind of relationship where one person celebrates you for real than, say, a hundred thousand people celebrating you and wanting to know you because they think you're famous. I wanted to give that to Simon who, he needed to grow up. He needed to figure out that, what's more important, being loved by a hundred thousand adoring fans or being loved by one person? I wanted him to make the right choice. That's why I did that.

Zibby: It's almost like you took all your life experience and it's like an egg that you cracked on the side and the eggshells inhabited a little bit of every character until it was all this one big soup of your splattered eggshells or something. [laughs]

Caroline: It is. That's why I told you you could ask me anything. I never set out to write a personal book. I never really do. Then it always becomes about me. That's why I laugh when people say, "Are all your books autobiographical?" It's like, well, yeah. I cut open a vein, and there they are. I don't really intend to, but that's what it is. It's all my feelings and obsessions.  John Irving said that your obsessions never leave you. That's why he always writes about loss and people he loves dying or bears or whatever. He said because it's always there. It always comes out whether you want it to or not. I think that's true. It does. It just sort of comes out. In a way, it's very healing because now I feel like I most definitely am never going to write about coma again. I'm done with that. I have no idea what is going to come next in my obsession, but I'll find out as I'm writing. That's what happens.

Zibby: Wow. You just gave so much amazing life advice and writing advice even in just how to keep it all into perspective. Do you have any other parting advice for aspiring authors?

Caroline: Yes. Do not give up. Never, never, ever give up. It's persistence that counts. Also, you are only seeing the tip of the iceberg when you're looking at the literary community. You're seeing the people posting about their great reviews or their great major book deals or their movie deals or whatever. You're not seeing underneath that maybe that person who got a movie deal has had eighteen thousand rejections before that. You're not seeing the eighteen thousand writers who are still struggling and they're not sure what they're going to do next. They're very talented and they still haven't hit their niche yet. Also, no does not necessarily mean no. When someone tells you no and rejects you, it could be because they're having a bad day. Could be because they're worried about their job. Could be that this particular book or essay or whatever is just not for them. Don't give up.

The other thing, my best piece of advice was given to me by Carolyn See, the writer and the book critic. She told me at a party where I met her that the best thing I could do, I was a young writer then, was every week write a nice letter, a handwritten letter, to an author you admire. Don't ask for anything. Just write to them and tell how much a book of theirs meant to you. She said, "They will love it. They will appreciate it. They will write back to you." That's how you build community. It's a good karmic thing to do. I thought, that's ridiculous, never going to happen. I did it. I actually wrote to John Irving. I tracked him down. I got a handwritten letter back from him. The first paragraph was, "You know, I read your letter twice because I kept looking for the ask. There was no ask. There was just this beautiful letter about what my work meant to me, and so I had to write you back." We made a connection. I've been doing that ever since. I just write to editors and I write to people. It's a wonderful thing to do. It puts kindness out in the world. People don't get enough of it. All you have to do is just say, "I wanted to tell you how much I love your work. Thank you." That's it. You can do it by email and it has the same thing. Mostly, never give up. Never give up.

Zibby: Thank you. That was such a powerful conversation. Thank you so much. It was so great to talk to you and hear your stories and your perspective on the world and your unique point of view. Oh, my gosh, thank you. Now I see why With or Without You was so good and where it came from. Then it makes it so much more meaningful for me as a reader. Thank you.

Caroline: Thank you so much, Zibby. This was so much fun. Of course, anything you ever need from me or from The Blaze, you know you just ask.

Zibby: Thank you. Me too.

Caroline: Bye.

Zibby: Bye, Caroline.