In this episode, Nora talks about her illness, what happened when she went into liver failure and her subsequent liver transplant surgery. Speaking to her friend and former colleague Christine Cestaro she talks about why she wanted to start So, Life Wants You Dead, the power of community and what this show is all about.
This is So, Life Wants You Dead, a show that explores the intersection of illness, disability, healing and creativity. Seven years ago, I was told I would need an emergency organ transplant. Before they put me under, I close my eyes and imagine myself writing. Now all these years later, I can say, that was honestly what saved me. Well, in a brand new Liberal, I'm Nora Logan. And this is a podcast on how looking at that helps you live. Today's show is a conversation I had with my friend Christine Cestaro. Christine and I met working together and late night TV, when we were both essentially still children. I asked Christine to interview me so I could share my story in a way that felt dynamic and interesting. Rather than just ranting at a microphone for an hour, we talked about how my illness came about how my community showed up for me during that time, and why I want to make this show. Here's the conversation. Hello, and welcome to the first episode of So, Life Wants You Dead. I'm your host, Nora Logan. And I'm here today with my friend Christine Cestaro who will be interviewing me about my story. I'm a liver transplant recipient who had my transplant in 2015. And I'm starting this show to raise patient voices and to talk about disability, about illness, about the truth of what happens when you are hospitalized when you live with a chronic illness or have a massive surgical intervention. And so I thought what would make the most sense is to have someone who knows me really well, who was there at the time at to ask me some questions about what my story is. So Christine, you have the floor. Welcome. Wow. I've never been given the floor before. So I feel like we should just start at the very beginning. I mean, you touched on it a little bit before. But what caused you to make this like why do you feel like this is an important thing for people who have gone through it. And maybe for people like myself, who completely had no idea what the journey was like, until you went through this? Yeah, I mean, I used to be one of those people, right, I got sick when I was 28 years old, I had never been sick before in my life. And I suddenly was thrown into this hospitalized existence over the course of two years. And I was sick for about three years. And I never really considered what it was like to be in that situation. And at the time, being a young person and having had a liver transplant so young, I felt really alone in it. And I started writing about it as a way to kind of dig myself out of the trauma of it. But also just to make myself laugh and to make myself feel less alone and to find community in the hopes that it would help me find community. And so from that I was really moved to then start thinking about doing a show where I could speak to other people who have lived through similar situations who have been in the hospital who live with chronic illness or who have a disability and learn how they heal. And a really cool side effect that I found through researching people who I want to be on the show is that so many people have this creative practice that they attach to their illness. So me writing my way through it and processing through just getting words down on paper, I found that other people have a beautiful art practice, or they write music, or they write poetry, or they make visual art and videos. And so it was this really cool confluence of things that happened. And I was like, I have to make a show about that. Yeah, and I think something like this is gonna be really informative, because just having known you, I have learned a ton. But I think before we get any further, everyone's gonna be like, Well, how did you get sick? Oh, yeah. And I think we need just to talk about it immediately. Because I think when something traumatic happens, everyone always looks for the why. Usually out of a selfish place. I think when something hap pens, you're just like, well, that couldn't be me. And I think your story is so unique. Because it could be anyone. Yeah, you know, and I think and it's funny you say that I feel like we've had a conversation about this before and I definitely talk about it all the time is like, people ask me what happened in an effort to avoid it themselves. Yeah. Which is insane. Like I, we have to acknowledge that it's insane. Because does it matter? Like whether whatever the reason, first of all, it's none of your business. Yeah. 1,000,000%. But also people are so morbidly curious because they're so scared for themselves. And I know I do it too. You read about something terrible, and you're like, oh, a person was, you know, hurt on the subway and I'm like, I don't take that Subway. Yeah, so I'm fine. You know, we're all just trying to, like, Guess, get another day because of this. We have so much knowledge of all of this news. And I think, you know, from an illness perspective, everyone's looking at it. Like, I feel so bad for you. But also, how did it happen? Because I'm scared. It's gonna happen to me. Yeah. Which isn't fair. No, but it's, I mean, it's human. It's Yes. Like, we want to avoid death as much as we possibly can. The possibility of pain like did you not take a vitamin so I can buy it? And then keep going? Or did you take one? And did they should I not do this ever again? Yeah. Yeah. So basically, at the time, I was working with you at the tonight show as a production assistant. And we have or I no longer work there, you still do. I had a hiatus and I went to Indonesia. And that's like, when everybody's eyes go wide when I tell the story like, Oh, yes. If that makes it make sense. Yeah. I'm never going to Indonesia. So I went to Indonesia, and was visiting some friends and I got sick there. And I just thought that, you know, Bali, Bali, which is where I was I was in Bali, is really common. Getting food poisoning is really common. And the way that it started was that I started throwing up and just feeling completely bone tired. And I had like another maybe week to go of my my trip. And I just got progressively worse. And I also was having insane emotional reactions. Like I couldn't stop crying. At one point, I was with my friend and her kids. And we went to get ice cream. And I just like, sobbed for three hours. It was very strange. And yeah, so I went back, went back to New York, was going back to work, somehow wasn't sick on the plane. And my body was just like, Okay, you're on the plane, just deal with it, and go back to New York and was still poor getting progressively sicker and sicker. Yeah. And you were there. So you remember, and I wasn't taking myself to the hospital. I did take myself to urgent care. Yeah. And I went to urgent care. And on the weekend after I got back, I guess, because I was very much into my job. I loved it. And I was like, I have to be there. Like I need to circle back on this. I mean, we'll talk we have to come back to that because I think it's a way larger point. Yes. But yes, that was definitely integral in the how you felt. Yeah. Yeah. Well, we'll definitely go back. But so I go into Urgent Care in Williamsburg. And the woman is like, there's nothing wrong with you. I think you just have a stomach bug. And she gave me antacids. Like she literally was like, Hey, go, here's some antacids. And I was like, Okay, I feel like I'm dying. But it's important to note that you were fully yellow. Yes, at this point. I mean, non medical professionals would see you and you were yellow. Yeah. And so I just got some really bad advice, basically, from various medical professionals, I then went to a very bougie medical practice that I won't name and, you know, paid the money to be a member at this big medical practice, because I was like, Okay, let me just, like get the best care, because clearly, there's something really wrong. And they were very lackadaisical in their approach to my care. They, they were like, Okay, well, you're gonna do a bunch of tests. They did a bunch of tests, like every test that they could do when I'm presenting as someone who has a liver condition, with the yellow skin and the vomiting and the lack of appetite, etc. And then none of the tests came back that I had anything not so insane. Yeah, everything was negative. I went to the gym before a blood test once and they sent me to get a sonogram of my liver or whatever. Like, immediately. Yeah, like Your Liver. Liver levels are off. Yeah. Yeah. So like, very strange failure, like this was a consistent failure. Yes. And the thing that they did show is that my liver enzymes were elevated, but they couldn't diagnose me because I didn't have I didn't have hepatitis A, B, or C, I didn't have any of those things that they usually test you for. And all the while, I was still going into work. And I was like, what's going on? And I was asking everyone like, what's happening? I don't Get it don't give awards for, like chillest person in liver failure. But you would have nailed it. Yes. Nailed it. Yeah, I was I was just like, I just don't know what it is as if it was like a full coat like a bad cold. Yeah, I was just coast playing like a normal person. I was like, Yeah, I'm cool. I'm good. No. Yeah. And, and then finally, they did send me to go for an ultrasound at Beth Israel, in Union Square. And I remember I went and had my mother meet me there who hadn't seen me like I wasn't my, my family hadn't seen me. And this timeframe is like two weeks, like, I'm back in New York at this point, two weeks, and I go to the sonogram, or the ultrasound rather. And my mother meets me there, and she's like, You are fucked. What is wrong with you? And I get the I get the ultrasound, and they're like, oh, it's gonna be 48 hours until you, you get the results. And I was like, I don't know if I have 48 hours to wait. And meanwhile, the people at the boozy medical practice are like, Oh, we're just gonna wait until you get the Hepatitis E results back. And I say this often. But if I had waited for that, I would be dead right now. And at that point went on is like, this is bullshit. We get in a cab, we go up to Cornell, Weill Cornell, New York Presbyterian and I admitted to the ER, and that's when they were like, you're dying. The doctor, the first doctor who sent me it was like, You're, you're dying. You're an acute liver failure. And that was that was basically the origin story of my opposite of injuries. Exactly. The concept of time, then, was crazy. Because now you're looking back on it. And you're like, Yeah, we had to it seemed like every day was so important. Things were only getting worse. And it all happened so fast. Yeah, it from the moment I got sick to my transplant, I think was less I can't remember, I think it was it was like, just over three weeks or something crazy. Do you think like, aside from the medical implications, that like ripping this band aid of going from like the Nora, as you knew it to a person who's now going to have to deal with this for the rest of their life, like having this be so fast? How do you think that reflected on you? Like, how did you manage that? Do you think that this was something that I mean, you can never say one is better than the other, but like the whiplash of going from like this young 20 something, you know, your whole life ahead of you as you saw it, and then having to say goodbye to all of those things. And then, you know, reimagine the next 85 years, you know, yeah, I actually my social work at one point when I was like, circling the drain for like, the fourth time, because I had so many setbacks. She was like, I know, you're gonna live until you're at least 80. And I was like, that sounds like really old. I don't know if I can make it. I don't know, as we get older, though, we're like, doesn't seem that I'm gonna be in a band when I know exactly, exactly. But yeah, I mean, I think the whiplash of it was real. Like, at the very beginning, I exhibited every symptom of PTSD. I don't really identify with that diagnosis anymore, just because of all the self work that I've done. And I don't feel like I have those symptoms as much. But of course, it's like an ever evolving thing. And I just wasn't prepared in the slightest. That's, I mean, but the way that transplant usually works is that people I guess that's my point. Yeah, like a lot of people, you know, unfortunately, spend a lot of time on that list. And here you are going from someone who walks into the hospital as if you're going to go home and answering emails on your phone, and then that starts a whole new life for ya. Like you didn't have six months to kind of wrap your brain around this in a slow media healthier way. I don't know. But yeah, no, it happened overnight. Yeah. And that's the thing like I'm never gonna know because it's just the way that it happened to me, right. Like, I don't know if I would have been felt better about it if I had had a year to prepare and, and been given all the things that they usually give you for transplant because I literally went in through the back door and it was like, I was trying to stay alive. Like I was, like, trying to do rituals to keep myself alive. And, you know, getting people to pray over me and all this stuff, like trying to reverse it up until the moment that I had the transplant. on. So I was like, really in denial. But I had such such little time to prepare that. The denial was like, Wait a second, I was in my friend's backyard last week drinking a beer. What the fuck? Yeah. I don't even know if you can say denial because right everyone around you was, you know, why would you ever go to that jump to that? And then also Yeah, you were hearing, you know, like, we'll figure it out. Yeah, yeah, exactly. Not your entire life is gonna change. No. And it was sort of, you know, just bad luck really, of people telling me like, yeah, just wait to go to the emergency room, your your, you'll be fine. It's fine. It's fine. It's fine, it's fine. And then it suddenly isn't fine. And I'm on death's door. And I'm, and I am completely bewildered. So I think there's nothing that can prepare you for that sort of dramatic thing that happened. And also, I'm, I'm kind of grateful that it happened in that way. Because it's my, it's just the way that it happened. So there's nothing I can change. For a long time. I didn't feel that way. For a long time, I felt really hard done by and like, my life had been taken away from me. Yeah. Do you want to talk about the grieving process of like saying goodbye to your old self, and now welcoming in this new life? And like, I think about it in terms of like, you know, smaller thing, the death of a loved one, or on a smaller scale, like a breakup, you know, you grieve the future that you thought that you were going to have, but with a disability with like long term illness? How do you put a time limit on that? You know, because this is forever? Yeah. I mean, and that's why is there not? I mean, who's to say there should be a time limit on that, but you know, you obviously have to come to terms with it. And how did that work for you? We're kind of jumping around. But that's okay. I mean, I think we should say also that I never got a diagnosis. So and that's the thing that really freaks people out is that I never was diagnosed, I just got went into acute liver failure, which is actually more common than people think. And so the grieving part was like twofold, really, because I did have to say goodbye to my old life, and that person, and also, I didn't have an explanation for what was happening. So I couldn't like put it in a neat box that we really love to have, as humans, you know, we really like to have that explanation. The doctors hated that there was no explanation, every single department in the hospital came in to look at me to try to figure it out. And they couldn't. And they even did a biopsy on my old liver. And they couldn't, they didn't get anything from it, although there was only three cells of my old liver left at the time. So didn't you tell me though, that there's like a large majority of people who go into liver failure that have the same exact outcome as you they don't know why? I think we're trained. It was an alcohol. That's what we see on TV, like an alcoholic that damaged their liver over whatever, you know, however many years, and you know, regulating whether, like, yeah, with alcohol, yeah, yeah. And your liver fails, but like this, they just don't know. So everyone kind of, I'm sure, there's got to be some sort of assumption because there's so little, like knowledge, I think, especially people our age. Exactly. And it does happen to people our age, more than one might think, I don't know the statistics on it, but I know that it happens, it's a common thing. And people see it, doctor see it all the time, and that people are transplanted in that way. So it's not completely out of the ordinary, it just felt like it was because I didn't have any idea about it. And no one else in my life had any idea about it, you know, the grieving they say that it takes five years, did you know that? They are psychologists and I really identify with that, like if for me, it took five years to like, I would wake up for the first couple of years and forget that it happened and feel like I was when I woke up but it was a nightmare. And then I would like pinch myself and I'd be like, Oh, I'm actually in so this is actually happening and then the grief of having to like literally build myself up from nothing on a physical level. But then also my identity had to shift completely. I you know, I was on this path. I really wanted to be a TV producer I really wanted to write for TV. I really wanted to that was my dream and I was like trying to happen I was there I was in it. And I had to kind of let go of that. And I held on for dear life. Like I went back we can go we can go back to this but I went back to work six months after my transplant. And I was I look at pictures of myself now. I And I was emaciated. I looked so unhealthy. And I had it. This is a side note, but like I had gone with my friends to get my eyebrows dyed, like in February of 2016. Right before I went back to work, and I just looked like so unwell. And then I had these like really thick tattooed eyebrows. So weird. And anyway, that's besides the point, but I really wanted to make it work. And then I got sick again, going back to work. But I think it's also important to say, there's no roadmap. No, you know, this was such uncharted territory that it was kind of like, well, I got to pick myself back up and run back to where I was. Because otherwise, you know, what am I doing? Yeah. And you probably felt that urge, because like, if you kind of stepped back and let go of that, then that kind of opens another door. Yeah, and I don't think you were ready to do that. No, I was definitely not ready. I really wanted none of us were day the same? Yeah. Everyone's like, Oh, you're coming back to work. Great. Let's go. And let's hang on. Cool. Yeah, let's just like pretend that didn't happen. Five months ago, whatever it was. And you know, I'll be completely honest, part of the reason I went back so soon after was because of the fucked up insurance situation in this country. Because I was deathly afraid that if that I would lose my amazing insurance that I had through NBC. And I felt pressure to do that. And in retrospect, I probably could have waited another couple of months. And who knows? I mean, yeah, the health care system and the pressure it puts on a person who's already struggling, just to live. Yeah. is absurd. Yeah. I mean, so there, we don't have 17 hours? No, we don't have to, we have to go deeply into that. But, but the stress to the show, and you'll you'll hear more about the fact that health care system in America, but yeah, just the pressure in general that I had around, not only wanting to stay the same, be the same person have the same things keep the same dreams, but also just the pressure, I felt around having healthcare and not having an option if I didn't have gainful employment. Other thing I'll say is, I really liked to drink, you know, like, I loved to party in my teenage and 20 something years. And I had to suddenly become sober. And that was really painful. And, you know, I come from a family of addiction. And it's a big part of my story. And it's something I hope to talk about on the show, and I am going to talk about on the show, and having to let go of that quote unquote, party girl, even though it sounds silly, because it's like, you're alive, like you don't have to have got so it sounds silly, though. Because these are all versions of you. Like you had to say at the time. You were saying goodbye to your career, even though I mean, we know that that's not the case now, but in hindsight, like in hindsight, but at the time, it was the death of a career, it was the death of your social life. It was the death of you know, the timeline that women of our age feel because if you don't meet someone, and then have the year with them, and then be able to vacation, right before you have kids, what are you gonna do? Like, all of those things are kind of converging on it's just collapsing on itself. So even though it's like silly, like, Yeah, I can't have champagne at a wedding. Like, it's, it's not the champagne, it's way beyond that. It's what it represents. It's the community. It's the social life. It's all of that stuff. And also like, yeah, you might like, if someone told me I couldn't have coffee for the rest of my life. Yeah, you know, I was pissed off. But yeah, I think there's like its own, you know, 12 steps, like the anger, the denial, all of that comes with so many things like this one diagnosis has this web of things that you were forced to say goodbye to, or change with no warning, and that's really traumatic. Yeah. And the grief of that, like really stayed with me for a long time. And it's still there. Sometimes it just looks different now, you know, and like I said, five years, I started to feel more like myself, I I was surprised that parts of me came back that I thought were gone forever. And I even had to do like some intention. Like intentional. It sounds crazy, but like I spent a summer in 2019 Thank God, it wasn't I wasn't trying to do this in 2020. But I was like, I need to have fun and remember how I'm allowed to have fun, right? And it's not all sadness and be I mean, when you live in it, it's really hard to break out of it and remind yourself like I can have joy. Yes, exactly. And like just be kind of reckless like to not reckless to the point of risking my life, but just be reckless and let go of some of that constriction that I felt for so long of like, I'm a sick person, I am never going to be able to be out in the world again, I have to just hide and the judgment that comes along with it like, you're sick, but you're doing X, Y, and Z, like all of those stuff. It's magnified when you have a disability or an illness. It's just like, I don't know, if you feel like people have extra eyes on your actions when you were so young. When this happened. It's like, yeah, I still had a couple of nights, where I didn't want to remember what happened. Like I had those in me that are now taken away. And I feel like I need to, you know, do whatever it is. But do you feel like there's a judgement like, you know, the lung cancer patient who was a smoker, or or the liver, you know, person loses their liver, that's an alcoholic, like the judgment that comes with you doing? Whatever it is? Yeah, absolutely. I'm at the beginning at the very beginning, and it really pissed me off. And I probably told you about it. People would say to me, oh, but you really liked the party. Did you like did suggesting that I did this to myself? And, scientifically, the rate at which my liver deteriorated? And how old I was, that would not have been a path for us. You know, like, that's not ignorant. Yeah. But a lot of people suggested it. And it really bothered me at the time. And now I don't care because it's like, you can think whatever you want, but I would still throw a truck at someone. But ya know, it's, it's wild. And also, yeah, just experiencing judgment of like, how I'm choosing to live, like, if I'm choosing to travel more, or just how I'm choosing to spend my energy, I find that people do have judgments around it just because I'm supposed to be resting. But I'm also supposed to be living. Yeah. You know, like that's can spend the rest of your life like on a fainting couch. Yeah, exactly. And I, you know, I spend a lot of time on a fainting couch. You do. It's by choice, though, and that's important. I think that's probably an important thing to speak to, is that judgment? Because I'm sure a lot of people that are listening, feel that way. Yeah. Yeah. And also, I think that's the whole reason I want to make so life once you that is, I want to experience I want to be the full spectrum of my humanity and like my humaneness. And I also want other people who live with illness, or who are in and out of hospital to exhibit the full spectrum of their humanity, because we are still people, we're still, we still have personalities. And I think sometimes it gets lost in the shuffle of like, oh, you're just a sick person now and like you don't have hopes and dreams and aspirations. And you don't have a full emotional life. You know, you don't have a sense of humor anymore. Because you're sick. Right? That's, that's a reflection that I felt. And I think it's bullshit. Yeah, I mean, I think especially with our relationship, that was the one way we were still able to connect. I mean, because you all due respect, were a shell. Yeah, you know, but yeah, I'm sure. Just heart like, you are dealing with so many things to find the person like to find Nora and all of that was very hard. But the only way that we could, you know, see a tiny little speck of light for us at least was like the everyday bullshit like the ramblings the joking. The I think that was our like, our lifeline, where it was just like, okay, like, she's in there. You don't have to be gentle with her. Like, you don't have to be gentle with words. Like we can still talk. Even if there were days when you couldn't speak there were days when you couldn't, most days you couldn't type like we were just talking on voice notes and stuff like that. But that was really important. And I think for even for me, too. Yeah, your instinct is like, you want to whisper in your ears are like you just like everything. Like automatically comes down here. Yeah. And you just are like, it's another beautiful day. Yeah, you know, and it's like that therapy voice. Yeah, don't shake anything. Don't make any sudden noises. Yeah, I think and I, the people I appreciated the most. I mean, I had an amazing community of people around me from my work people, from my colleagues, to my friends to my family. It was unbelievable how people rallied around me, but you know, everyone was having their own experience of my illness and it brought up a lot for people. Yeah, I mean, it was scary. Yes. Like it was very scary. Yeah. Yeah. And but the thing I appreciate it The most. And I, especially with you, you never treated me differently, and you kept bringing the jokes, which I really appreciate it because I, the only way that I could survive within it was seeing the humor and the day to day, because it was the other option it was. So it was so dark. But actually, I'm curious how how it was for you? Because we've never actually spoken about it. Right? I know, we haven't, we had so many other things to talk about. I think we were just so young. So I think the magnitude of something like this did not like even when it was really, really, really bad. It was so confusing, because you never had someone go through that before. So that was obviously really hard to like, see your friend go through something that's hard and something that you did not know how to navigate at all. And I think, you know, your immediate instinct is, like we said, it's just to be like, really gentle. And I think you have to be really conscious to not do that. Because you're like, This person is so fragile. I'm gonna mess it up. And it was so that time was just so weird. I mean, we can talk about, like millennials and their jobs. And do you think that we are the last generation? Or do you hope? We're the last generation that has it programmed into our brains to not literally go into work while we're dying? Like, I think in the reason also, it took so long is because we were just like, but you go to work, you get up and you go to work. It sounds like we are like going to war. Yeah, it's absurd. No, and I should say that I was the office PA, and my responsibilities, were sending out a weekly email about pizza. And let's not downplay the importance of the pizza, though. I mean, I love that everyone loves the pizza, we still do. And ordering patents, like basically, I mean, I did other things, I won't completely dominate myself, but you weren't doing important things. But let's I wasn't at the basis of it. It was like very to the functioning of the show. Like I wasn't like, the show would go on without me, type thing. And I just was so blind to taking care of myself, that I refuse to stop for a minute and be like, No, this is bigger than me. This is bigger than my job, I need to take myself to the hospital. I just refuse to do it. And I think it was also going back to that grief, I was like slowly accepting that I was going to be in this insane group on some level grief for a long time. So I didn't want to let go of it. But in that, in the period of time since that happened, which was now coming up on seven years ago, I've seen so much change in regards to the cultural conversation around work and how people are taking more rest. And they are setting boundaries. And especially in the pandemic, we've seen it so much with the great resignation of people realizing that they can't keep living like this, because everybody's burned out. And it adversely affects health. And it's not a way to live. And I and I hope that we're the last generation that is programmed in that way. But I still see it all the time in my own impulses and the people around me. So it's hard. It's hard that conditioning is deep. And it's patriarchal. It's 1000s of years old, and we're not going to just shake it off anytime soon, I don't think. But I'm hoping that things start to shift in a more restful direction. As we get more and more information, and honestly, the sad thing is that more and more people get sick, you know, from stress and from working themselves to the ground. So I don't know, I hope so. But I know that next time in the next lifetime when I'm dying, I won't go to work. You won't be like, Oh, hang on. There's not enough paper on the coffee room. Exactly. I must go. I mean, it did say that, you know, you were conscious of like not having you know this long term illness be your personality or people seeing you like that. I think for a lot of us work was our personality. I mean, I'm a little different now I got a dog so having a dogs my personality, but you know, that was so central. Yeah, and it still is, you know, like having a job or whatever it was or climbing the ladder because you're on this, you know time a Uh, I think that became such a huge part like that was our personality that it was hard to break out of it and hard to see yourself beyond it. So if like, that's your whole world had you put yourself above it? Yeah, to go to the doctor. Yeah. And you are in service to this greater goal. And I think especially because, you know, I was 28. Now I'm 35. In your 20s, you're like, really working towards something. And then they say your, your 30s are for building but who knows? I was working towards something that I like, felt needed to happen yesterday. So if I missed any time out of that, then the whole thing would fall down. And the joke of the whole thing is that it fell down anyway, it did. Yeah. And I was ejected out of the whole thing. So how do you continue your relationships when you're a different person? Yeah. I don't know how I did it. And actually, I'm sure it didn't, in terms of like, having space for other people. I think for I disagree. I had a lot of space. I mean, the the year of everything happening is kind of a blur. Yeah. So I only kind of think about, you know, us after when it comes to stuff like that. But I thought that you were always really good at that. And I was always just like, how do you have the patience? Yeah, it's something that other people have told me and I, I guess it's true. But my relationships had to completely change. And a lot of my friendships went through some really painful periods. Because the magnitude of my experience was so big, huge that like it, there wasn't much space for anything else for a long time. And then things come down. And it was like, whoa, I'm just here by myself. How do I deal with that? And then I went through this whole other iteration of it. And I don't know, I've always been someone that people have come to me with their issues, and they've come to me for help, and or just to listen, or advice or whatever. Well, because if you reflect back on like the last three conversations that you had with a friend, what are you doing your complaint? Yes. Which like, I'm working on. But you're complaining, you're taking very small things. A guy on the train looked at you weird. Yeah, you almost tripped. Yeah, someone was rude. And you're sharing all of those? Hopefully, with, you know, some sort of, yes, yeah. But that's what it is. So then all of a sudden, you have this person that's gone through like the realest stuff that you can possibly imagine. It's got to be tough. And I imagine a lot of people listening who are dealing with these kinds of things. Maybe they're just going through it. How do you kind of navigate these new relationships? Like, did you address it? It depends on the person, right? Like I had had, and have a lot of close friendships. And I'm lucky to have those. And with some people, we were like in it and talking about it the whole time and dialoguing about it the whole time. And then with other people, it happened two years later. And it was it was a case of having to rehash stuff that I had already worked through, but they had their own experience of my illness and needed to be heard in that. And I get that. And I don't think that there's a roadmap, you know, there's not a roadmap for any of this. But the thing is, you aren't alone in it, like people who are going through serious health stuff. Odds are, there's someone else who has gone through the same thing. Everybody around me at least went a little bit crazy. And you know, in different ways, like my parents had a really intense experience. My mother, really like she put herself in the hospital, she was so stressed, like we were in it's an another story for another day. But we were in side by side hospital beds at one point. So yeah. For each relationship in my life, it's been different. And it's been a journey, for lack of a better word, it really has had to like go through lots of peaks and troughs, and some people did leave my life. And I've had to mourn that, like some people just fully are not in my life anymore. And it's not necessarily down to my transplant, but that's part of it, for sure. And just like the changes in my lifestyle, and I mean, it's interesting that, you know, we've been talking for a while now and it's not even about the liver. You know, it is this like ripple effect that you know, touches so many areas, which I think you know, what you just said reminded me, I think we have to talk about the vulnerability in all of us. I I think it's really hard being this very strong, independent, you know, whether you want it to be or not, you know, that's what we were. And that was, you know, that was part of our personality. You know, I have my job. I'm supporting myself. I'm having fun. I'm like the New York City millennial dream, and then, boom, you have no choice. But to go back to you know, being a kid and relying on your parents relying on your friends for some really vulnerable stuff. Oh, my God. Yeah, nightmare. It's a nightmare. It was a nightmare. I was living in Greenpoint with a roommate I did whatever the fuck I wanted. Anytime answered to no one I like and I was extremely I'm an only child and I was independent my whole life. And it was the most humbling thing I've ever been through. I one of my best friends who is an occupational therapist, she was there with me in the hospital a lot. And at one point, she had to shower me like I was fully naked, swollen, I had become been open. Yeah, open wounds. Black and blue all over my body. And I didn't shower for like the first. I didn't know that I could shower for a really long time in hospital like, My butt's gonna fall off. Yeah, like they did like, you know, bed showers. I'm forgetting the name. But you know what I mean? Like, Spot Cleaning, or whatever it is. I'll tell you what, it's definitely not spot cleaning. They brought out the Dyson and didn't want to over and it was fine. Yeah, they've had some tide on me. A Swiffer Wet Jet once a week. And I was good. But yeah, there came a point where I really needed to shower It was after my transplant. And my friend stood there with me, showering me I was sitting in a chair. And it was a situation that I had never been in and have not been in since. And I had to rely on her for her kindness and generosity to to show up for me in that way. And that must have been scary for her to to see me like that and also have to essentially clean me like I was a baby. And I have so many other stories like that, of having to rely on my parents who don't like to cook, who did not expect their 20 year old to suddenly be back at home having all these dietary restrictions and needing to eat 90 grams of protein a day and having like all the it's a full time job for everyone involved. Yes, it's so much work. And I was someone who really didn't like help. I didn't like getting help, I could do everything myself, like you said, willfully independent, and I just had to surrender to it. I had to surrender to the help. And And luckily, I had a ton of it. And I'm fully aware still that that's not always the story. I had so much help. And not only for my family. But you know, work showed up for me in a big way. I got so many amazing food deliveries to the hospital from my place of work. And it's a huge lesson and leaning on community. And it's something we've seen in COVID, to have like really needing to be there for each other in this interdependent way. But it taught me how to lean on other people and accept that and be vulnerable in that and allow for that to feed me rather than feeling guilt. What kind of friendship is like, Hey, we're cool. As long as everything goes perfectly. Yeah, no, exactly. And as long as like I'm doing something for you, you have to do something. No one's keeping score. One is keeping score. So let's go back to going to the hospital. Okay, let's just talk about that. Because I feel like that's its own, like being a patient. You were you didn't just like go to the hospital that was like your Marriott like you. You were a full time resident. Yes. And that's really hard. I mean, you talked about the food deliveries, like there are so many small things that you don't think of that are probably very overwhelming for people. So can you talk about just like getting their post surgery and just realizing that this is now your room and board for the foreseeable future? Yeah, I mean, the whole time at first at least. I was trying to get out of there and they you were frequently trying to break out. Yeah, I well. I did break out once. That was the second time the second time around. Yeah, I broke out to go work on a shoot and had like an IV hanging out of my arm. It was the most insane thing and it was from basically in retrospect, I had steroids and ends use mania. So I was like, I'm breaking out of the hospital and this is normal. Yeah, and everybody cosign because everyone was like, okay. But yeah, from the very start I was trying to get out and I they did let me go home and then I got sick again and I had to go back in. And I dubbed the the hospital club Cornell because it was like, my club quarters. Yeah. Um, you know, it was the intricacies of being a patient in the hospital and you're there day in day out. It's like, I mean, that's how you got here. Yeah, yeah. It's the four. It's like those walls come in on you. And that's just where you have to live out your day, you will, I would just watch the clock, and wait for people to come in and out, in and out. And really knowing too, that the world goes on. I think that's like a hard part. You know, people are going getting on with their lives. And then they're you are feeling like literally and spiritually static. Yeah. Yeah. And I had no, like, you have nowhere else to go, you have your room. And even even when at least this is my experience, when you want to take a stroll around the nurse's station, everybody has tabs on you. So like, Oh, what are you doing? You're taking a stroll around the nurse's station? And I'm like, yeah, what does it look like I'm doing so it sort of this constant monitoring. And even if you're gone for I didn't leave the hospital. By the way, the my hospital room, although I was moved all around the hospital, I didn't leave for 35 days or something I didn't like even go outside to breathe fresh air. So it's really your world become so tiny. And yet, for me that first time round. It was where I was like the most light the most. I felt like I was experiencing this spiritual awakening in a way. And then of course, I came back down to earth. And also it was the painkillers. But But like, yeah, that connection was so important. But also like, yeah, you're looking around and seeing the world continue to turn. Like how did you like did that make you feel angry? Did that make you like, how did you kind of shake that? It took me much longer than my hospitalisations to shake that because I felt like everybody was moving on with their lives and becoming more successful again, with the obsession with success. And, and and my job and the rest of it arguably surviving. Yeah, exactly. You know, I would have to put that at the top. But also being in relationships and getting married and having kids and all the rest of it the things that we're very conditioned to think that we really need in order to be successful. And I was seeing that, you know, the tail end of your 20s. That's what's happening and into your 30s. And I felt very stuck still, like there was no movement. And there wasn't really any movement, at least for three years, in the period that I was extremely sick. And the way that I dealt with it was through grieving through feeling really hard done by by feeling really sad by writing about it by trying to make light of it by trying to see why I thought I was so left behind, you know, what is this conditioning that's telling me that I'm a failure, because I just managed to escape that. You know, right? Society is sad for me, because I'm not married yet. Right? And my grandmother is asking me why I'm still single, right? You know, so I'm still single. I'm, for me putting this into like my own lens. I lost someone really close to me when I was like 19. And no one around me had been through that experience on like, such a big level. And I felt so angry that I was going out into the world. And nobody cared every day, that nobody was just like, feeling these insane emotions that they were just like other 19 year old kids going about their life. And I was so mad that the world just kept going around. Yeah, yeah, I remember one specific instance, like I was really angry for a long time. And sometimes, but I went out to a concert of a friend of mine. And everyone was there in their lives, like a few of my friends. And I was still it's probably only like, four or five months, maybe maybe I don't remember maybe six months, something around there when I got back to work. And I was just so pissed off that everyone was like having a good time. And they were cool. And they like, in their jobs and in their lives. And hadn't weren't catering to how completely messed up I felt in my body in my mind. And I acted like a complete asshole that night. To the point where my friend was like, Are you mad at me? And I like yeah, kind of. Even though I wasn't mad at her. I was just angry. And I needed the world to know it. I mean, I had a lot of anger. I like shouted at people in the street. And that's not particularly my I, my thoughts aren't really your brand. No. But in New York less weird. Yeah. Do you want to talk about how things change for you on your outlook? Like, you know, did you have? If people don't know, now they're gonna eventually know you are very spiritual? Yeah, you are the person who would like go into one of those retreats where they don't speak? Have you been to one of those retreats where they don't speak? I feel like if you haven't, you will be Yeah, I'm planning on it. I have been silent. Yes, I have. What's that like? I have been. Yeah, there have been times in my life where I've been silent. So I think that that's important to know, to get it out. Like that's a huge part of who you are. Yes. And, you know, do you find that? That was a really important thing? Did that carry you through? Did that change? Or just general outlook? Did this whole experience kind of just kind of spin you around and put you in a different direction? Yeah, I'm it absolutely did. I was pretty spiritual, I guess before just because my family. They're kind of weird. And they started doing yoga, in like, 1982, whereas everyone else started doing it, like 2005. So I was always familiar with meditation, and they, they have a pretty rich spiritual life, lives themselves. Although we're not particularly religious. And then in my illness, I just kind of lost touch with anything like I was, I've always been really into astrology. And at one point, I remember being like, that's complete bullshit. I'm dying, like, I don't want to think about the planets, like I would get emails through. And I'm like, No, this is not real. Although I've done a 180 on that, again, because I'm really into astrology. But it's funny because I lost touch with it. And then I like really feel so connected to a power greater than myself and feel like a real sense of purpose and a real sense of being held by something that I don't know what that is. But because I still don't, I sort of see it in nature I, I have lots of different ways that I connect to my own spirituality. And then in the really dark moments as like, nothing, none of this matters. And then I'd come back to it. So there's like a real ebb and flow. And I think it's natural to feel that way when you're faced with death, multiple times, and also just the physical trials of being constantly prodded and having multiple procedures and you're just your body feeling so at the, at the mercy of the medical system. So you know, it's it's been a journey, for sure. And now I feel like my spiritual life is is richer than ever, and I have a real solid practice, I practice meditation every day, I teach meditation. I teach breathwork. It's very much weaved into my life in a way that I don't see it going away anytime soon. And I lean on it for support and guidance. And you know, people would give me those that Viktor Frankl book Man's Search for Meaning. And I think like three separate people gave it to me. And if you're not familiar with that book, it's written by a Holocaust survivor. And he writes about this, like, where how can you find meaning within something so dark, you know, what he went through. And there were times where I really didn't find any meaning. And I was like, This is too much for anyone to be able to hold them bear. Again, my social worker, she had such a massive impact on my life. There were moments where I had nothing left in the tank for trying to believe that things will be okay when I was, you know, on my fifth setback, and with C diff, and other viruses and having to just deal with all these things that I didn't expect to happen. And she said to me, you know, I know you don't believe it right now, but I'm going to believe it for you. And I'm going to believe it for you until it comes true. And that really helped me and then I really needed people who could sit with me and in the pain and feel like shit and be like, This is terrible. What's happened to you is not fair. And you are allowed to feel like it's not fair because the toxic positivity thing can be really detrimental. I had someone say to me like, why are you crying? Someone in the hospital? Why are you crying? Your tears should be joyful. Your tears should be you should be grateful. And so that's where the line is because often I think we tell people know you just need to be grateful for what you have. You need to be okay with this situation and always be worse like there's always someone worse off bla bla bla and especially when it comes to specifically transplant because, and so much gratitude to my donor, someone has to die for you to be able to live. And that's a lot to grapple with. But it doesn't mean that you have to be grateful to the point of not well, it goes back to what you were saying before that like, what are you going to live your entire life and you know, nuns costume because exactly this happened, yeah, are locked away. You know, we can talk about immunosuppression, and I will on on the show, but I really thought that I would like never be able to take the subway again. And I did it for two years. And I didn't think that it could be in a crowded place. I mean, it's kind of funny to talk about your stuff with COVID. But it was radical. It was totally radical. I was ahead of my time. But yeah, it's a fine line. And I think it's something that we need to have more conversations around, when it comes to the patient experience. Because sure your life can be saved. And that's great. But to tell people that they need to blindly be happy for it doesn't make any sense, because it doesn't line up with what the intricacies of trauma actually is in the body. You know, it really doesn't always feel like that. Yeah, I think it's, it's a matter of something. It's not black and white. It just lives in the gray. Yeah, and I think also just, it helps to make light of your situation. And just power through, right, like, it helps to just laugh about the horrible things that can happen to you in the hospital. But it also, really, you really need to cry about it. Because it's it's too much sometimes for too much too soon. And people are told, I know from my own experience, and from other people's experience, people are told when they're crying in the hospital, they should stop, or they get a psych consult called on them. And it makes no sense. So yeah, it's complicated. There's no one straightforward answer to it. So did you feel like a burden of like, having to carry that when you're not fine yourself? I think it depends on the person to depend on. Yeah, what what it was, I think sometimes, like, my mother had a lot of emotions that I had no time for. And it's complicated because mothers and daughters are complicated. And she's the closest to you. Yes. And the closest to the situation. Yes. And she had to witness it on a level that no one else did beyond what you did, like, you know, you'll never see her perspective at so like the end, we don't see eye to eye. Again, that's a different podcast. But you know, you she experienced things that I mean, we talked about it before, like her own trauma associated with seeing those staples seeing you when you didn't even see yourself. Yeah. And also the waiting, you know, it was like a 10 hour surgery having to sit and wait for everyone. I know that people were like, on the edge of their seat, wondering if I was going to drop. So yeah, I definitely felt annoyed. I think the word would be annoyed sometimes that people felt like their emotion was important when it just wasn't. And it felt like a burden to me. But people were mostly respectful. Like I would have people come in and visit me I had lots of visitors, which is great. And I could often see like, how intense it was for them. Like how was it for you? When you would come visit me? Terrible? Yeah, it's terrible. I mean, also because we talked about this it happened in an instant Yeah, like this was not some like prolonged illness. You get used to someone it was like, you went from dropping 50 pounds to being like a skeleton to then being you had so much water. Your body was like ripping open. The biggest staples I've ever seen in my entire life. Yeah, because I absurd. Yeah. And that's great. And again, for someone who's insanely emotional. It was terrible. Yeah, but what but what I remember, for the most part was that I could kind of see people holding in. I remember one time my friend Bettina came to see me. And she had just come from the airport. She came straight from the airport to see me with her suitcase. And she was like wearing this really cute little outfit. With like little shorts. She's like such a pocket rocket, and she comes into the room. And speaking of spirituality, I had my shaman who I used to work for you had everyone I feel like I'm important had everyone we had, like, literally, if you thought that you spoke to God, come on in. Oh, my God, you are welcome. I had every sect, every person, I had every type of healer come in and try to help me. And they did. And so he was there. And he was because he was just coming to see me. He wasn't necessarily doing any sort of healing. But he had just come to see me. He was my friend. I used to work for him. And she comes in, and I get up to say hello. And at that time, I had tubes coming out of both sides of me and filling up these bags of blood basically. Yeah, yeah. So it was pretty shocking to see anyway. But they hadn't come to change the bags for a while. So I get up to say hello to Bettina. Oh, no. And Itzhak is his name, he was standing there. And he also didn't really, it's not like he was that familiar with this situation, either. So he had a look of shock on his face, too, when I stand up, and one of the bags bursts. And there's blood all over me all over the floor. Luckily, my other friend Karina was there and she was she's, she's the occupational therapist, and she like, jumped to and so did my mother. And everybody helped me clean it up, but Bettina is there in her like, cute little outfit with a suitcase just from like, I don't know, she's somewhere in Europe. And she's the first time she's seen me look of shock on her face. It's x like, look of shock on his face. And I'm just standing there, like, nice to see you. This is our reality. Yeah. And they're holding it in, you know, and I, I There are lots of times where I think people didn't expect necessarily for it to look so shocking or be so shocking, and didn't burn it burden me with their emotions. And then sometimes they did and, and it just, it did feel like a burden. But it was also such a ridiculous situation that how people are just going to act the way they're gonna act. But there were some dramatic moments for sure. With I mean, if people I think this podcast is so important, because it kind of reminds me of like, you don't know any of this stuff. You don't know what it takes to have a baby until your friend has a baby and is like, telling you all the details that you would never talk about. Yeah. And it reminds me of just like, coming to your hospital room with no contact me again, we were so young, with no concept, it was just kind of like, here's fuzzy pajamas. And just like stuff that at that point, like you could fit into fuzzy pajamas, like you were in a gown with tubes. And you know, it's that sort of thing where people are just so uneducated, about, I mean, how to be a patient for one like the, what you're talking about, and then also how to kind of just like go through it from the outside of just what that person is going through, like your Starbucks gift card doesn't go. So what what do people need? And how do they need you to shop for them? And what, what does the patient experience actually look like? And that's exactly why I'm doing this show, because I think it's different for everyone too, right? Like going back to that humanity. Everybody has their own experience, and they're human. So they're gonna have a different experience from me to the next person to the next person. But the important thing is to talk about it and have these conversations so people feel less alone, because I felt really alone. Even though I had so much community around me, I felt so singular and terminally unique. And I'm absolutely not. There's so many people out there who have had similar experiences and continue to, by the way, I, you and some other people at the tonight show gave me a forever 21 sweater that I still wear to this day. So that was that sounds like talking about it now. We were like, what does she need a forever 21 sweater. So why don't why don't we talk about? I mean, the biggest takeaway here, which is the donor list? Yeah. I think that neither of us, you know, put stock into until this whole thing happened. What do we need to know about it? Why is it so important? I mean, obviously, why don't we talk about that? Yeah, I mean, there Are the my number might be different. So I may correct myself, but I pretty sure that there are 112,000 people on the waiting list right now, for organs in the US. It's a huge problem 17 People die every day from not receiving organs that could save their lives. It could be fixed, basically tomorrow. But of course, we know that that's not how things work. Because right now it's an opt in system. So people have to sign up for it and give consent in order to be an organ donor. If it was an opt out system, it would be a much better situation, they switched to that in the UK, and the organ donor list went way down. Of course, you need, you need to notify your family members, because if for whatever reason your family members aren't notified of it at the time of your death, they'll be able to basically have the final say, it's it an issue that isn't really talked about because I think transplant kind of freaks some people out. They think it's kind of science fiction fictiony. It's like someone else's organism in your body. Like also to come to terms with it. You're dead. Yeah. And that's scary. And you're now thinking, you know, a young person is saying, like, Gee, I hope I don't die. But I guess you can have these if I'm exactly. So you have to think about your own death. So it feels scary. But the cool thing is that it's so easy, you just put it on your license. So it's really it's very cool. It looks great. I would not be alive. If I didn't have an organ donor. It I was so lucky to receive the organ that I did at the time that I did. It's actually a complete miracle, because organs don't come up that easily, especially livers. And successfully. Yeah, exactly. Because my liver wasn't a perfect match. And it could have been that's part of why I had so many setbacks, but it's a huge gift that you can give people and it's so easy, and you can't take it with you. And it's a flawed system right now. So if you have the information around it, and you're able to take some action and just sign up, you're saving a life you can save up to eight lives with you know, they use your eyes as well. So I think that for a while there was that like rumor going around that they're not going to try to save you. Oh, yeah. You know, yeah, just know, they take an oath, they have to try to save your life. It's like their whole deal. Yeah, it's they have to try to save your life. Don't worry, they will still save your life photos important. So that's, that's good. Good. Because people will think like, Oh, I'm just being harvested for organs. Apparently that's a rumor. What can people expect from the future? Like who what kind of people you're going to talk about? Talk to? What are the topics that you hope to touch upon? And what do you kind of hope that people get out of this, about you about the topic, just like in general? Yeah. So this season, I'm speaking to some really cool people. I am interviewing a poet who has lupus, I'm speaking to a mother of two, whose son had cancer as a baby and went into remission. And then she was recently diagnosed with breast cancer. And she's a writer. And she writes really beautifully about her experience. I'm speaking to another writer who started a fashion magazine who has M E. And each person that I'm speaking to has either a chronic illness or a disability has had a serious surgical intervention, but they have a creative practice that they channel that experience into, and it shows the full spectrum of their humanity, I'm so excited about the people I'm speaking to, because they really don't hold back in terms of seeing that they have this certain experience of being sick of having a disability and not allowing it to detract from their humanity and putting it into their work. And it's really cool and really inspiring. And the whole goal of this show is to show that that's a possibility. But you don't have to do anything in order to show the full spectrum of your humanity when you're sick. You don't have to necessarily be creating, but it's just interesting that so many people are moved to so that's what we're doing this season. And I hope to have many, many conversations with lots of different types of people all over the world. And thanks to COVID It's really possible that I can just speak to people everywhere. Also what's really important and something that you know, we're trained as an at an early age to stay away from it's just feeling uncomfortable, whether you're the patient, whether you're the friend, sitting in uncomfortableness is the worst. But it is integral to this whole process, whether you're hearing about the transplant itself, like the medical things that you went through having to be so vulnerable, or just listening to like the ripple effect. And how terrible that was just sitting with that I think can be hard. But I also think it's really important. Yeah. And it's 100% of what I'm trying to do is like, what is it that makes you feel so uncomfortable? And let's talk about it because odds are, another person feels the same way. So thank you for bringing that in. Okay, well, thank you to Christine Cestaro, for being my interview guest for asking me about all the ins and outs of my liver transplant and I will see you next time. That was our show, So, Life Wants You Dead. Thank you so much for listening. Special thanks to Christine Cestaro, who took time out of her busy life to make the treacherous journey from Long Island to Brooklyn. She's one of the most talented people I know and always share so generously of myself. Since this particular episode is about me. I'd also like to thank my friends, family and colleagues, as well as the medical professionals who helped me through that particular time in my life that wanted me dead, and for everything in between. This episode was made in collaboration with support from Soho House. Many thanks to Jamila Brown, Min Shrimpton, Olivier Geraghty, Sagal Mohammed, Erica Bonet and Teo Van den Broeke. Our editing is by the amazing Olive Olin. Our illustrations are by the extremely talented Ronae Fagon. And if you like what you hear, please subscribe. Leave us a review or rate us on Apple podcast Spotify, or wherever you listen, if you don't have anything nice to say, go have a snack instead. As the old saying goes, rating us and subscribing really makes a difference. You can find us on Instagram at So, Life Wants You Dead. Thanks so much and see you next time.