TRANSCRIPT Depresh Mode with John Moe Ep. 236: Esmé Weijun Wang’s Mind Convinced Her She Was Dead and In the Afterlife

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John Moe: A note to our listeners: this episode contains mention of suicidality and child sexual abuse.

Grab some extra shoes, perhaps a fleece. Let’s pack a couple sandwiches for the road, because you and I are going on a trip. It’s Depresh Mode. I’m John Moe. I’m glad you’re here!

Transition: Spirited acoustic guitar.

John Moe: Okay, fine. It’s not really a road trip. It’s a trip inside someone’s mind, and it’s a long trip that goes a whooole lot of places. Places in the mind—in a mind—that you probably haven’t been before. Now, major depressive disorder is a real thing. Generalized anxiety disorder is a real thing. Those experiences are very, very common. If you think you don’t know anyone with depression—well, yes you do. Today we’re going to some rarer places—places that are just… you didn’t know humans did that.

We’re gonna talk about one person’s—one very eloquent and descriptive person’s—life with psychosis, with schizoaffective disorder, with Cotard’s Delusion; her life in the most prestigious level of higher education; and how shockingly bad her mental health was handled there. And we’ll talk about the complex post-traumatic stress disorder that she has recently identified as perhaps being a really major contributor to all of it. And sure, you may have depression and not some of these more extreme conditions. You probably do, but I think you’ll find that you can relate. Because all of mental health is on a continuum. It forms a spectrum. We’re all on it somewhere together. And while it can be distressing—of course—it and we are pretty fascinating.

Esmé Weijun Wang is a brilliant writer based in San Francisco. She’s the author of the New York Times bestselling memoir, The Collected Schizophrenias. She’s also a writing instructor offering a program called The Unexpected Shape, helping students write with their challenges or disabilities instead of against them. Esmé has experienced depression in her life and anxiety and schizoaffective disorder. That’s when there are schizophrenic symptoms like hallucinations or delusions, but also mood disorder symptoms like mania or depression. On top of this, Esmé has experienced Cotard’s Delusion, a phenomenon where someone becomes convinced that they are, in fact, dead. I talked with Esmé about her life, her health, and how she’s helping others.

Transition: Spirited acoustic guitar.

John Moe: Esmé Weijun Wang, welcome to Depresh Mode.

Esmé Weijun Wang: Hello! Thank you so much for having me.

John Moe: Thank you for all the work that you’re doing and for the writing that you’ve done about it and shedding so much light. I would love to kind of start back early in your life. When did you begin struggling with mental health issues? How far back does that go for you?

Esmé Weijun Wang: Well, this is really an interesting question. Because when people would ask me this in other interviews back when my second book came out, I would just say, “You know, I was kind of a neurotic kid. I had—”, and then I would describe like the various neuroses that I had starting from when I was about six years old. But then it turned out, and I’ve been learning in the last few years, that a lot of those behaviors were actually trauma responses.

For example, I had issues with compulsive behavior regarding like going to the toilet in the night. And I thought this was like—growing up, I thought this was a kind of obsessive-compulsive disorder or like basic anxiety disorder thing. But then the more I’ve been kind of investigating my history and looking at what was happening in my life at that time, the symptoms and the behaviors I was exhibiting, it seems more like trauma related response. A lot of children when they’re being sexually abused will wet the bed. Like, people know that’s like a really common symptom or behavioral symptom. And for me, it was just having to get up and go to the bathroom over and over again. So— Which makes the original question more interesting, because you’re wondering like when does your mental health journey start?

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And it might not be from that original like kind of diathesis stress model where you’re like, “Oh, this was genetic, and then something triggered it, and then it really kicked off.” It’s more like, “Well, maybe this never would’ve developed for you if you hadn’t had this happen in your life.”

But then, in terms of the more conventional definition of when I started exhibiting problems, it was probably around sixth grade. I was having a lot of insomnia, a lot of depression. Eighth grade I started self-harming. And it wasn’t until I was about 16 years old that I saw my first psychiatrist and my first therapist.

John Moe: And what did they say?

Esmé Weijun Wang: Well, the doctor that I saw—the psychiatrist that I saw—said that I had clinical depression; I had generalized anxiety disorder with panic disorder; and also said— Which is not actually appropriate to say about a 16-year-old, but he also said that I had bipolar—(correcting herself) or not bipolar, sorry. Borderline personality disorder. Which was interesting. Which, again, links back to the child sexual abuse aspect of it. Because those kind of axis issues often have to do with trauma—or at least borderline personality definitely does.

John Moe: Can I ask you about the original trauma?

Esmé Weijun Wang: Yeah. I’m still trying to figure it out. I think I know more than I did like 10 years ago or 15 years ago. It wasn’t like I retrieved memories, really. It was more like I had all these separate rooms that I didn’t go into. So, it wasn’t like I ever forgot these behavioral symptoms. It was more like I tried not to think about them. But then if I thought about them, they were still there. So, without getting too much into it, I would say that when I was around six years old, I experienced child sexual abuse. And it may have lasted from anywhere from I think one to two years.

John Moe: So, then you’re diagnosed with—and I am surprised that borderline personality disorder is mentioned to somebody that young. But then you grow up, you go to Yale. And just to kind of fill out your story—because it’s a significant chapter in your story—what happened when you were there?

Esmé Weijun Wang: Well, you know, as you may have read in my essay collection, I wrote this essay called “Yale Will Not Save You”. And it’s in part about how I used Yale as kind of like a shield in terms of, “I may be crazy, but at least I have this big trophy to hold in front of myself.” But it’s also about how damaging colleges can be and how damaging higher education can be. When I was there, I had just been diagnosed with bipolar disorder when I was at home. But they told me they weren’t going to be putting me on any medications until—they were gonna wait until I had a doctor at Yale. Because you know, if I was gonna be transitioning, they would probably need to be the one overseeing everything. Which makes sense to me, although I do think it was wild that they sent me all the way across the country with no stabilizing medication. (Laughs.) And so—

John Moe: Yeah. Yeah. “You’re Yale’s problem now.”

Esmé Weijun Wang: Yeah, exactly. And Yale does not like to have students who have those kinds of problems, as you may know from reading the very recent Washington Post article that helped take down Yale in some ways. I was hospitalized in my freshman year. It was my first hospitalization, my first inpatient hospitalization. They told me that I couldn’t stay unless my mother—who was working full-time—came out to stay with me in an apartment off-campus. And so, for about a semester, I lived in this weird apartment off-campus with my mother, with whom I had a very bad relationship at the time. I was there, and then the next year I was able to go back into the dorms.

However, in spring break I was hospitalized again. And it was at that point that they said, “Okay, you can be involuntarily kicked out, and it will give you a better— It’ll be a better thing to put on your record.

[00:10:00]

“Or you can resign yourself and say like, ‘I’m leaving.’”

John Moe: “I’m dropping out.”

Esmé Weijun Wang: Yeah, I’m dropping out. “And then that won’t look good on your record.” And they said, “You can try to come back in”—I think it was a semester or a year. I think it was a year. And also, you know, it was during a time when universities were very afraid of liability. A lot of parents— I don’t know if you remember; there was a student at Columbia who had shot another student. There were also many students who were jumping off of Columbia and dying that way. So, they were very afraid of something happening to these kids who were mentally unstable and then having the parents sue them for all they were worth, basically.

John Moe: Wow. There’s the money. Okay. Follow the money.

(She agrees with a chuckle.)

Yeah. Well, I mean, let’s back up a little bit further. Like, how did you end up in the hospital twice? Like, what was going on in your life? What were you presenting? What were you feeling?

Esmé Weijun Wang: Yeah, for sure. So, the first time is kind of a weird situation. So, as I mentioned to you, I had not been given medication for my bipolar disorder before I went to Yale. So, when I got there, I found a doctor right away. You know, I was trying to be good patient—you know, doing the right thing. And she prescribed me a dose of Depakote, or valproic acid, which is a mood stabilizer originally intended for epilepsy, and it still is used for epilepsy. But I found myself having the same symptoms I was having when I was at home. And I was very confused by this, because I was on medication at that point.

And I remember I got this phone call from the lab at Yale, and they said, “You know, we just wanted to check in with you. Do you know that you’ve never been on a therapeutic dose of Depakote ever since you’ve been here?” (Laughs.)

John Moe: What’s a—? What do they—? What’s a—? What does that mean, therapeutic dose?

Esmé Weijun Wang: Yeah, so—okay. So, when you’re on a medication like Depakote, it’s very important to get frequent lab work. Not just to see if you’re on a, quote/unquote, “therapeutic dose”—which I’ll talk about in a little bit—but also just to make sure your liver’s okay. And you know, there are certain—

John Moe: It’s a very heavy drug. Yeah.

Esmé Weijun Wang: Yeah, there are a lot of impacts it can have. But basically, everybody’s metabolism metabolizes these drugs differently. Some people might— You know, it also depends on like how tall you are, or how thin you are, how much you weigh, and things like that. So, they have this kind of mathematical equation or a scientific equation that helps figure out via these blood tests like, “Okay, have you reached the therapeutic dose of like point”—I’m totally making this up—“0.34ml per, you know, liter of blood. Because that’s what we consider the therapeutic dose that will allow you to start seeing the benefits of this drug?”

And I had been going in and getting these tests done, and apparently nobody thought it was important to tell me. I don’t know if they were telling my doctor, but they weren’t telling me that I was not reaching the therapeutic dose in any case the entire time I had been there. At that point, I was already very much on the edge. I was feeling very highly strung. I was having what are called mixed episodes. I was punching trees. I was writing notes in class that didn’t really make any sense; they were just kind of nonsensical notes. I made a list of reasons to kill myself and reasons to not kill myself. And I did go to urgent care, and I essentially like turned myself in and said, “I’m having problems.”

And then they immediately were like, “Okay, we’re gonna put you in the hospital.” So.

John Moe: When you’re on the inside of something like that, when you’re in that rough of shape, is there a—does it feel frantic? Or is there kind of like a “Oh, I understand the world that I’m living in, and I’m living by the rules of a world that makes sense, at least to me, in this place.”

Esmé Weijun Wang: Yeah, this is a very important question that I get a lot about, in particular, my psychotic episodes.

[00:15:00]

So, you know, the most dramatic is an episode of what’s called Cotard’s Delusion that I experienced in around 2014/2013.

Transition: Spirited acoustic guitar.

John Moe: You are going to definitely want to hear about Cotard’s Delusion. It’s an extremely rare psychological condition. You have probably never met anyone who has experienced it. But you will after the break.

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Transition: Gentle acoustic guitar.

John Moe: Back with author Esmé Weijun Wang. She’s told us about experiencing a variety of mental health conditions, which she now believes stemmed from complex PTSD as a result of child sexual abuse. And she says she developed Cotard’s Delusion.

Esmé Weijun Wang: And that is a very rare condition. A lot of people who have this just die, because they stop eating or stop drinking. But it’s essentially the delusion that you are dead. And so, when I talk about my experience with it, what a lot of people ask me is, “Did you know at some level that you were not actually dead?”

And so, this is—I think—kind of similar to a lot of things that have to do with mental health issues is insight. Like, the actual, scientific term for it is insight. Some people have more insight than others. So, when you meet somebody in a psych hospital, and they’re like, “I am Jesus,” and nothing you can possibly do will be able to turn them away from the idea that they’re Jesus—like, they 100% believe it—that is considered low insight.

What I was experiencing more often—although, I did fall into the less insight category at sometimes—is that I would be… To me it was like—with the Cotard’s Delusion—it was like I would be looking outside, and the sky would be green with purple polka dots. And then people would ask me, “What color is the sky?”

And I would say, “It’s green with purple polka dots.”

And they’d say, “It’s not. It’s blue.”

And so, everybody would come up to me, all these different people, and they’d say, “What color is the sky?” I’d say the same thing over and over again. And they’d say, “No, that’s wrong. It’s blue.”

And so, eventually I just learned to go along with what they said. Because I still saw it as green with purple polka dots, but apparently everybody else around me did not. So, it was easier to get along with people if I just went along with what they said, even if I didn’t believe it myself.

John Moe: And is the green sky here an analogy for feeling like you were dead, or are we talking—?

(She confirms.)

Okay, yeah.

Esmé Weijun Wang: Yeha, it’s just like some kind of psychosis. It could have been like spiders are in my brain, which was also one I had. Or like, everyone around me is turned into a robot. That was also a very common one. That one is known more as like Capgras Delusion. But yeah, I think I was able to be conscious enough of what I needed to pretend.

[00:20:00]

And I think that that allowed me to seem more normal than people generally think of psychotic people as being.

John Moe: I’ve been fascinated with Cotard’s Delusion for years. Because I’m trying to envision kind of—I guess the rules of the game a little bit? The rules of the reality that you’re living in when you have that. Is it a thing where you think you are dead, and everybody else is alive, but you’re just a ghost? Or are you living in a world where of the dead, but you’re the only one who knows the truth?

Esmé Weijun Wang: Yeah, I mean— I think that Cotard’s Delusion really varies between people who experience it. Because I was invited to be a part of this short documentary about people with Cotard’s Delusion. They were filming it in—wait, I forgot—Amsterdam. They were filming it in Amsterdam. So, they flew me out, and I was recorded for this. Documentary. But they had basically no other person to interview except for like doctors who had worked with people who had Cotard’s Delusion.

John Moe: Yeah, it’s incredibly rare. Yeah.

Esmé Weijun Wang: It’s incredibly rare. And so, they were really going along with what I had to say. But I think, you know, that’s a little bit disingenuous, because I am not— I’m a very singular case, but I think that all people with Cotard’s Delusion are a very singular case. So, if anybody is interested in this topic in particular, there is an essay in my second book, called “Perdition Days”. And that is all about my experience having Cotard’s Delusion. And it’s especially interesting, I think, because it’s written as the condition is going on. So, I didn’t wait until it was over to write about it. I was writing my way through it.

So, in this case—in my case—I woke up, and I was overwhelmed by the sense that I had died and that I was getting a second chance at life. And I believed that I was in an afterlife where everything looked kind of like my old life had been, but that I was not alive. This was just an illusion, you know? It’s like the idea of like what some people think Heaven is like; you die, and then you get to see your dogs, and you get to see the people you love and all that some such. So, I went into my husband’s room, because we were sleeping apart at that time due to mental health stuff. And I said like, “I am dead, but you are alive.” No, “I’m dead, and you are dead, and Daphne’s dead.” Daphne is our dog. And I was like, “But it’s okay, because I get to do things over again. Like, I’m getting the chance to experience life and to do better this time.”

And so, that’s like the nice way it started out. Spoiler alert, it got much worse. It did not remain in this happy-go-lucky state. But that did last for a little bit. And during that time, I was just like a nicer person. I mean, I generally consider myself to be a fairly nice person, and I think that most people who know me or know my public persona know me as a pretty nice and friendly person. But during that time, I was even nicer. I mean, I would be on the phone with— What are those people called? Like, telecommunications?

John Moe: Telemarketers.

Esmé Weijun Wang: Yeah, telemarketers. I would be so nice to telemarketers, and I wouldn’t be mad at them, I wouldn’t lose my temper, I would answer their questions, I would just say, “Sorry, I’m not interested.” You know, I’d be waiting in line to pick up my medication, and everybody around me would be very grumpy and angry about how long the line was. And I was just like very peacefully, placidly standing there. (Laughs.)

John Moe: Now, in this world, are all those other people in line? And those telemarketers, are they dead people? Or are they simulations for a trial that you’re on for a chance to, I guess, get into heaven?

Esmé Weijun Wang: Yeah, I mean, this is a good question. I don’t know if I can answer it completely, because the logic of being psychotic is not very… (laughs) sensical in those ways.

[00:25:00]

So, I think at the time, I experienced it as “everybody around me is fake. I am real, but I’m also dead.” And so, that’s how I would experience it. Not long after that, I became really attached to the idea of perdition. And this had to do with Marilynne Robinson’s work as a literary author, because I really love her work. And she’s a Calvinist, and she focuses very strongly on perdition—the idea of perdition. And one of the tough things about Calvinism, if I interpret it correctly, is that you are predestined. So, you know, no matter what you do, you are predestined to—maybe to perdition. You know, which is essentially their kind of hell.

So, I went from being this happy-go-lucky person who was like, “Oh my god, I get to do this life over again. I get to like be nicer to telemarketers.” (Laughs.) And it went from being that to being like, “Oh my god. I am in hell. I’m in perdition. Like, this is what has happened. Like, I am dead, and everybody around me is dead. And I’m just stuck here. And I can’t get out.” And it was so awful. I think it was during this time that I’ve experienced some of the worst psychological and psychic torment was being in this state where I was like, “I can’t get out.”

Because like, you know, I think one example to help people grasp what this was like was I never even thought of killing myself. Because I was dead already! If you’re dead already, you’re not gonna think about killing yourself, because you’re already dead.

John Moe: Yeah, it’s impossible.

Esmé Weijun Wang: Yeah. So, it doesn’t even like cross your mind. So, it was a really, really hard time.

John Moe: How long did it last?

Esmé Weijun Wang: It lasted for a few months, and it did not end with any fanfare. Nothing dramatic happened. I didn’t like pray the memorare or whatever. And then like, I’m not Catholic, but I still am interested in Catholic culture. (Chuckles.) Nothing particularly happened. It just lifted one day, and then it was gone.

John Moe: Did it feel, when you were in that period— Like, it just reminds me of dreams that I have where there’s a final coming up for my college history class, and I haven’t been going all semester. And you know, it makes no sense, because I’ve completed college many decades ago! (Chuckles.)

Esmé Weijun Wang: I also have this anxiety dream. (Chuckles.)

John Moe: Yeah, yeah! But like, you know, it doesn’t stand up to any kind of scrutiny, ’cause I know how old I am, and I know that I have—you know, I finished college. But in that internal reality— I mean, it’s almost like fiction writing or like, you know, acting in a play. Like, you are in this reality that doesn’t hold up to scrutiny, but it still feels really real. Did it remind you of being in a dream? Of one of those dreams you mentioned?

Esmé Weijun Wang: No, because it felt so real. It didn’t feel like a dream. Maybe it felt like a dream in that when you’re in a really bad nightmare, you don’t realize you’re in a dream. And then when you wake up, you’re like, “Oh, thank goodness.” And you have that kind of exhale of relief. But in the dream, you don’t have that exhale at all. You’re like actually being stabbed by, you know, people with like bayonets; and you know, you’re in this worldwide, terrible war zone.

The initial reason I said no to your question was that, when I think of dream, I think of the word dreamlike—which seems kind of like easy and floaty and—you know. But it was a dream in that it was a nightmare.

John Moe: (Sympathetically.) Yeah. Yeah.

As far as you know, is it an extension of some other mental health issue that was already there?

(She confirms decisively.)

I know you’ve been diagnosed with schizoaffective disorder. Did it feel like an extreme of that or an extreme of depression or—?

Esmé Weijun Wang: Well, to me it’s actually quite clear, because I had experienced Capgras Delusion many times.

John Moe: And recap what that is again?

Esmé Weijun Wang: Yes. I’ll— (Chuckling.) Don’t worry! I’ll explain it!

It’s a Capgras Delusion. And so, when I was first starting to have psychosis, it was largely hallucinations. So, it was like, “Oh, I’m looking at that car, and there’s a dead corpse in the car, and there are maggots coming out of its eyes,” and like all that stuff.

[00:30:00]

So, it was mostly that to begin with. Then I kind of went more into delusions. And there is this kind of much more well-known delusion called Capgras Delusion, and this is the kind of like “everyone around me is—” It’s a very—in like very sensationalistic writing about this delusion, they call it the Invasion of the Body Snatchers delusion, because it is like everybody around you is not who they are saying they are. And to put it in the most simplistic, scientific way, it’s because there’s something wrong with your brain. Something is going on with your brain where your emotional connection to the people you are seeing is broken somehow. But you’re still seeing them. So, then your brain goes like, “Wait a minute, this isn’t Bob”—or whoever—”Like, I don’t feel anything for this person who says they’re Bob, even though they really look like Bob. I mean, I could be convinced. Or I could be deluded into thinking this is Bob, but clearly it’s not Bob. Because when I see this person, I don’t feel any warmth or any”—you know, whatever. So, that’s what Capgras Delusion is.

John Moe:

Esmé Weijun Wang: Yeah. So, you might— Common versions of Capgras are like everybody is replaced by doubles, or everybody is replaced by robots. Those are the two most common, I believe. And so, I experienced both of those at various times. And Capgras Delusion—yeah, it just kind of came and went. It was very present in my life for many years. And Cotard’s Delusion is actually quite related to Capgras Delusion, except it’s more like… me seeing my face in the mirror or me seeing these people around me or me seeing the world around me is fake. All of this is fake. And then your brain goes, “So, why might that be?” And then it becomes, “Well, it’s because you’re dead!” (Chuckles dryly.)

And so, the a really sad thing with a lot of people with Cotard’s Delusion—and one of the reasons this filmmaker was not able to find many people to be in the documentary—is that they often starve themselves to death. And they— You know, they just believe there’s nothing inside them. And people have even brought them to get x-rays. They show them “this is the x-ray of your insides; you really are alive.”

But it doesn’t do anything, because there’s always these loops that you can do of logic where you’re like, “Well, how do I know you didn’t just make that x-ray and tell me that?” Like, it’s very difficult. Yeah.

John Moe: Trying to tell someone “no one is out to get you” just casts you as part of the conspiracy of people out to get them.

Esmé Weijun Wang: Yeah, exactly. Just because you’re paranoid don’t mean they’re not after you!

John Moe: “—they’re not after you.” Thank you, Kurt Cobain.

(She agrees with a laugh.)

Are these delusions born out of the schizoaffective disorder that you have?

Esmé Weijun Wang: Yes. So, schizoaffective disorder, to explain it really quickly, is— So, in bipolar disorder, which was also previously known as manic depressive disorder, you’ll have these manias or hypomanias, and then you will have these depressions. And sometimes, depending on what kind of bipolar you have—bipolar one or bipolar two—people with bipolar one are able to have psychosis during one mood state or the other. So, you might have a depression that is psychotic. So, then you start to believe that like the world is rotting, and you can see everybody around you as like—you know, the colors are duller. Like, literally the colors are and all these things.

But with schizoaffective disorder, you still have these mood disorder states. Like, I recently just whiplashed between like three of them very recently. You’ll have a mood state, then you’re done with that mood state, and then you’ll have a psychotic episode that is unrelated to either mood state. So, that’s the biggest difference is that the psychosis is not linked to the mood state.

John Moe: And explain, if you could, the difference between schizoaffective disorder and schizophrenia.

Esmé Weijun Wang: Yeah, so the biggest difference is this kind of like very dramatic change in mood.

[00:35:00]

People who have been diagnosed with schizophrenia often have like mood lability. So, this very in unstable mood. But it’s not quite the same as schizoaffective disorder, which is more of a clear cut like “this is a manic state.” You’re like buying 10,000 pairs of shoes, and you’re climbing to the roof of your house, because you want the aliens to come pick you up. Like, that’s a more concrete state. Whereas a lot of people with schizophrenia do have that more labile condition where— You know, I think a lot of us have seen this. You know, you’re waiting to catch the bus, and there’s someone who’s just like shouting and shouting things that don’t really make any sense. But they’re very clearly feeling some kind of mood, like some kind of intense mood.

So, that is more what schizophrenia is. Schizophrenia is also much more about like a lack of motivation. There’s a lot more— It’s associated with a lot more difficulties with hygiene. Yeah, schizophrenia is actually quite different from schizoaffective disorder. But because of that psychotic element, people do tend to think of them in the same— I mean, I call them the schizophrenias. Which is this kind of spectrum.

Transition: Spirited acoustic guitar.

John Moe: This is back to the point I mentioned earlier. We’re all on that spectrum somewhere. More about life with schizoaffective disorder and how Esmé is helping people with obstacles after the break.

 

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Transition: Gentle acoustic guitar.

John Moe: Back with Esmé Weijun Wang.

How long have you been affected by schizoaffective disorder, and when did it get diagnosed?

Esmé Weijun Wang: I think I first began to exhibit signs when I was… I think in like 2006, but I wasn’t actually diagnosed until 2013. And because I was a psychology student, and because I had been working in multiple research labs that had to do with mood disorders, I kind of knew what was going on. Like, my psychiatrist was very reluctant to call things by what they were at the time. I think she was worried that I would panic if I knew that I had like a schizoaffective disorder. So, she would say things like, “So, how are your sensory disturbances?” Instead of saying like, “So, how are your hallucinations?”

And I also think she really knew that I was dealing with schizoaffective disorder. Because I was having these psychotic episodes between these mood episodes. And that’s like a very clear-cut (chuckles) way to discern. And I knew that, and she probably knew that I knew that. But you know, we just all pretended that it was still bipolar disorder.

[00:40:00]

John Moe: And didn’t she mention like, you know, in an email or something, “We think what you’re going through is psychotic episodes, and also here’s a book you might like to read,” as a way of kind of tethering you to an everyday reality of some sort?

Esmé Weijun Wang: Ohhh. No, that was more of when this doc—the psychiatrist that I really loved—sent me an email and said, “Okay, well I think at this point we can say that you have schizoaffective disorder with—like, schizoaffective disorder with bipolar type.” Because you can also have schizoaffective disorder with just depression or just mania. And she said— And I was very upset, because she— Not so much because of the diagnosis, but because then we had an in-person session, and she said, “We think that you have a very low chance of ever being back at like 96/97 degrees of capability.”

And I also knew all the research that people with schizoaffective disorder and schizophrenia have a very low likelihood of being able to live anything like a normal life. And so, I was crying, and my therapist was also on the speaker phone. And I talked to the doctor, and I asked her like, “What can be done?”

And she said, :Well, there’s a CBT program for psychosis.” And having—

John Moe: Cognitive behavioral therapy.

Esmé Weijun Wang: (Laughs.) Yeah. Having done this podcast, I am sure your listeners are very familiar with CBT. I personally don’t love CBT even though I love homework, so I should really like CBT.

(John chuckles.)

But I, in fact, found this to be a ridiculous response to what I was dealing with. I felt like being told to do CBT when I was in this like Cotard’s Delusion frame of mind was like telling someone to sit and meditate in the middle of a burning building. Like, it just really did not feel appropriate. And so, it was at that point that we began to look into ECT. So.

John Moe: And did you do ECT? Electroconvulsive therapy?

Esmé Weijun Wang: I did not, because I had to go to a consult before we looked further into it. So, first of all, the wait list was quite long. Second of all, I think the doc— So, they made me read a book before I went to the consult. It was just a book about ECT. Honestly, I don’t know if they make everyone read this book, because it’s actually kind of a complicated book. (Chuckles.) So, I don’t really know if they were just like, “Oh, this person used to work in a research lab.”

John Moe: Maybe they just heard “Yale and Stanford,” and just gave you some homework.

Esmé Weijun Wang: Yeah, yeah. And so— But one thing I really grasped from that book was that ECT is actually not that useful when it comes to delusions. It’s much— It’s very, very good at treating intractable depression—like, treatment resistant depression. It’s okay at treating hallucinations, but it does not have a very good track record when it comes to delusions. And that was why I was there. So, especially given all the information about ECT— Like, I am not against ECT. I know there are a lot of mental health advocates—or people who talk about mental health issues in public—who are very much against ECT. They like are— You know, they really want to protect the general public from having to go through this experience of ECT.

I am not one of those people. I think if I were in bad enough shape, I would definitely go for ECT. But it would have to be… it would have to meet the criteria for being in pretty bad shape. And—uh, what was I just talking about? So— So, I did not do the ECT, because when I took the pros and the cons— So, the pros were gonna be: maybe you could get some relief from your delusions, however it’s not very likely, because ECT doesn’t work well with delusions. Or the negative side would be that I could lose huge chunks of my memory, which is an enormous part of ECT side effects.

John Moe: You mentioned earlier, the PTSD—Complex PTSD, from what you went through as a kid—as you get that information, and you start making the connection to that—

[00:45:00]

How does that connect, or does it connect, with the schizoaffective disorder, the Cotard’s, all these other things? Like, is there—(sighs). I know it’s with mental health, we often look for a root cause, and I think we sometimes do that at our own peril, because we’re trying to oversimplify something that doesn’t want to be oversimplified. But how much at the root of all this is that Complex PTSD?

Esmé Weijun Wang: Well, I think it’s not— There is a danger of oversimplifying everything and saying like, “Well, you know, you were knocked over when your cousin tried to grab at the puppy. And that is the core of all of your mental health problems.” (Laughs.) But at the same time, I think that— You know, my therapist has mentioned that the schizoaffective disorder and the mood issues and all of those things can also have stemmed from the Complex PTSD. Because Complex PTSD really deals with—and this is where I get into issues. Like, I have 14 clinical illness—like, chronic illness diagnoses. And so, you could look at that as like either I’m a very unlucky person and somehow I just had all of these diagnoses.

John Moe: (Chuckling.) Stumbled into it 14 times.

Esmé Weijun Wang: Yeah, exactly. I just, you know, walked into the same brick walls over and over again. But I think that it’s also useful to think about like— Okay, so if a kid is exposed to a stressor—like, a very intense stressor—over and over again, and they can’t escape it, and then—

John Moe: And they can’t process it.

Esmé Weijun Wang: Yeah. And their autonomic nervous system is not able to stabilize, because you’re constantly in flight mode or freeze mode or—you know, whatever your particular brand of traumatized state tends to be, then you live your whole life with the button stuck on “on.” And so, as that’s happening, your autonomic nervous system is degrading; your body is degrading, because you cannot put a body through like this intense— It would be like running a marathon every single day, you know?

John Moe: Or it’s like having a compromised immune system.

(She agrees.)

Like, you can’t fight off infections.

Esmé Weijun Wang: Yeah, exactly. And so, many people do find themselves diagnosed with autoimmune things, who are in this situation. And I eventually—when all other paths were looked at, all other stones were overturned, I was sent to the Stanford Autonomic Disorders Clinic. And they did give me a diagnosis, which is Hyper Adrenergic Postural Orthostatic Tachycardia Syndrome. (Laughs.) Which is a long and fancy way—

John Moe: (Jokingly.) Easy for you to say!

Esmé Weijun Wang: Yeah. Which is a long and fancy way of saying that your body has a problem where adrenaline is like being shot through your body over and over and over in a way that can’t be controlled. Like, it’s not because you’re doing anything. It’s not because even necessarily like stressful things are happening in your life. It’s just that your body has gotten so used to having this happen that it’s like stuck. Again, stuck on that “on” mode.

(John affirms.)

Yeah. And then that affects what the— The acronym is POTS. But like, so the way that POTS works is that your heart has to work much harder to do things that people without POTS find easy. So, for example, if I’m lying down, my heart is at a normal rate. If I sit up, it immediately skyrockets. If I stand up, then it’s like even higher. So, people with POTS get tired very easily, because it takes so much effort to have to like be in these different positions that people consider normal.

John Moe: I wanna ask about the Unexpected Shape Writing Academy.

Esmé Weijun Wang: Yeah! Ask away!

John Moe: Yeah. I just think it’s a— I would love to have you explain what that is and how that idea came to you.

Esmé Weijun Wang: I think I was kind of entering my emerging writer status when I first became really physically ill, and I was starting to get all of these 14 diagnoses of chronic illness and all that. And so, I was really scared.

[00:50:00]

Because I had written my first book when I was in graduate school, largely. And I was still largely physically healthy—or at least, my body was running on so much adrenaline that I thought it was healthy, ’cause it was able to keep me going.

John Moe: Yeah, you’re grinding.

Esmé Weijun Wang: Yeah, exactly. (Chuckles.) Your body has to collapse at some point, so. But I hadn’t reached that point yet. So, once I did have the big collapse, and I was unable to get out of bed for months at a time— Like, I’d go to the bathroom, but that was about it. So, for years, I very rarely left the house. I could have like one activity a day. So, that could be like a phone call, or like lunch with a friend, or like going on one walk around the block. But other than that, it was not possible. And so, I had to find ways to adapt what I loved to do and still wanted to do, which was write. So, for example, my second book—The Collected Schizophrenias—was almost entirely written on my side, in bed, on my iPhone or on my iPad Mini. I have to say, this was not a particularly—what’s the word? Effective? (Chuckles.) This was not a particularly easy way to write a book. But—

John Moe: It’s not known for being a great word processor, the iPhone.

Esmé Weijun Wang: No. Like, I was lying in bed and like literally— ‘Cause I still type this way on my phone. I don’t use two thumbs, ’cause I’m an elder millennial. And so, I was like tapping on the keys like a chicken—just like a chicken pecking, you know? And so— But I did manage to write the book that way, and I did manage to get that book published, and then it achieved the success that it did. And so, having that, I began to think of like, “Okay, what about the other people like me who are dealing with various limitations?” Like, it doesn’t have to be a chronic illness. It could be a disability. It could be that you have kids that are running around screaming all the time. Just like, how many writers out there or would-be writers are out there who have limitations and yet, just don’t know how to approach it? Because they’ve been told by Stephen King that you have to sit at your desk for four to six hours every day—

John Moe: Every single day. Even Christmas.

Esmé Weijun Wang: Or you’re not a serious writer. (Laughs.) I hate that book, because he said that and— Anyway. Stephen King, don’t be my enemy, but also I’m kind of your enemy.

John Moe: (Laughing.) From what I know of Stephen King’s work, you probably don’t want to be his enemy.

(They giggle.)

But I don’t think you’ll make it into the same classification that some of the more severe enemies are.

Esmé Weijun Wang: Yeah. No, there are plenty of people to be really bad enemies toward. Anyway. So, then I began to teach classes—not specifically for writers, but more just for like people who live with limitations and like, “How can you meet your goals? How can you make adaptations to your life that would make it easier to meet your goals?”

And then people started approaching me after The Collected Schizophrenias came out and saying like, “Will you teach our MFA program?” Or like, “Will you teach this workshop if we fly you out here?”

So, I began to teach online classes. And this was also during 2020, so everybody was like into online education due to the beginning of the pandemic. And so, that was when I really started the Unexpected Shape Writing Academy. And can I explain what the unexpected shape refers to?

John Moe: Yes, please!

Esmé Weijun Wang: Okay. So, I wish I could cite the book properly, but I do not remember the name of the book or the author. So, my friend’s father wrote a book, and he’s very into baseball. So, a big element of this book was talking about how baseball can be a metaphor for life. And so, I really liked this metaphor, and I ended up kind of taking it and making it my own, where the idea is: So, you have this baseball diamond, and it’s a game, and there are rules. So, you have to like go from home to first, and then first to second, you know. Like, you might want to, because it would get the game over faster and you could win more easily—like, you might want to run from like home base to like third. But that’s not how the game is.

So, the way I think about it is like life is kind of like a game that is shaped in a certain way with certain limitations. You may want to sit and write for four to six hours at your computer, but that’s not the shape of your life. And that’s another— That’s kind of where the name, the unexpected shape, came from is that like we don’t expect that these things are gonna happen in our lives.

[00:55:00]

Like, we don’t expect we’ll get in a car accident, and you’ll have a TBI. Or like, you know, you’ll get suddenly very ill (laughing) with 14 chronic illnesses. But you know, once you have that unexpected shape, you can learn to work within the shape.

John Moe: So, you’re dealing with the Complex PTSD; you’ve been dealing with the schizoaffective disorder, all these multiple diagnoses, like you mentioned. You seem to be living a successful life, both in terms of professional success and, you know, functioning in the world. What is your life like living with the cards that you’ve been dealt?

Esmé Weijun Wang: It’s always so interesting to me when people tell me— Okay, so I have it coming from both ends. Sometimes I have people telling me, “I can’t— You know, you’re living such an amazing life. You’re getting so much done. You fly all over the place to give talks. Like, you’re running a business; you’re writing books, blah, blah, blah.”

And then I’m like, “Hmm. Well, like I never feel like I’m doing enough, and I always feel like I’m failing at however much I’m supposed to be doing, because I always think I should be doing more.”

Then on the other side, I have people like my therapist. And I tell my therapist like all the things that happened in that week, and she’s always like—not always, but she’s often like, “Wow. Uh, that’s a lot. I can’t believe you’re still standing.”

(They chuckle.)

I mean, I think a lot of this also came up because I have a lot of chronic illnesses, and my husband was diagnosed with blood cancer in 2023.

John Moe: Oh, I’m so sorry.

Esmé Weijun Wang: So, yeah. It’s really changed our lives a lot. (Laughs.) There’s a constant medical emergency happening, either with him or with me. So, it’s just— But yeah, I am very grateful for what I am able to do. My caveat for that is that I never feel like I’m doing enough, but I think that that’s just a symptom of people like myself, who were raised to be overachievers. And at the same time, I’m constantly trying to remind myself like, “Don’t burn yourself out, because that’s what caused a lot of the problems in the first place.”

John Moe: Yeah. That’s a hard duality to live with. Because I think that’s— I mean, it’s certainly exacerbated by some families or some certain upbringings, but it’s just living in a capitalist society anyway, where you feel like you need to outdo somebody else. Like, somebody needs to be defeated in order for you to get a win. And then also, this knowledge that that constant grind is going to erode your mental health. How do you walk that tightrope?

Esmé Weijun Wang: I mean, down to the very definition of what progress is or success is for people living with schizophrenia or with the schizophrenias is: can that person hold a job? Like, if you are looking at research studies about how can people with schizophrenia do well in society, their definition—their main definition—is going to be “can they hold down a job?” So even— You know, it’s not like, “Is this person a good aunt to their right nieces? Is this person, you know, living a joyful existence? Is this person, you know, smelling the flowers?” No. It’s “can they hold a job?”

John Moe: Yeah. What are you producing for the rest of us?

Esmé Weijun Wang: Exactly. And I think— So, it gets really right down to that. You were talking about our capitalistic society, (chuckling) and I think it really comes right down to that when it comes to like “are you doing okay, as a person with schizophrenia?” And I think that’s also in part why I— I mean, it’s linked to the “Yale Will Not Save You” essay, where I’m trying to say, “Hey, I may have this really intense diagnosis, but I did graduate from Stanford with a 3.99 GPA.” Like, I’m trying to prove myself as a human being via accomplishment, which I do not think is a good way to try to earn your way into being able to exist, essentially.

John Moe: Well, I think you’re a good human being.

Esmé Weijun Wang: (Laughs.) Thank you!

John Moe: Esmé Weijun Wang, thank you so much for joining us today.

[01:00:00]

Esmé Weijun Wang: Thank you so much. I really appreciate it.

Music: “Building Wings” by Rhett Miller, an up-tempo acoustic guitar song. The music continues quietly under the dialogue.

John Moe: Esmé Weijun Wang’s works include a novel, The Border of Paradise, and the memoir The Collected Schizophrenias. More about her work and her classes at EsmeWang.com.

I continue to marvel, over the course of making this show, about the capacity of the human mind—of this incredibly powerful engine that we have in our skulls. I mean, even the whole running the body thing that it does is pretty amazing. Imagination is amazing. But the ways it just fucks with us! Also, incredible! The way it makes all sorts of problems—incredibly creative, ornate, complex problems. Granted, those problems are awful to experience. We wish our minds would not do that to us. But the range! The mind has so much range. To me, it helps to stay interested in that. It helps me manage my mind to think about all that minds can do.

Our show exists because people support it. Thank you for funding our show. Thank you for funding the idea of talking about what minds can do, and hopefully it can help unlock some things for you and for other people. We exist, as I said, because people support that. People want that in the world. So, if you’re already donating to the show, you are making it happen. It wouldn’t happen without you. It just would not; we couldn’t. And if you haven’t supported it yet, please do so, It’s really easy to do, and we do need every dollar. Just go to MaximumFun.org/join. Find a level that works for you. Maybe it’s 10 bucks a month, whatever it is. And then just select Depresh Mode from the list of shows, and you will be one of the people supporting it! And the show sounds different when you’re one of those people. It sounds better. Sounds richer.

Be sure to hit subscribe. Give us five stars. Write rave reviews. That gets the show out in the world as well.

The 988 Suicide and Crisis Lifeline can be reached in the US and Canada by calling or texting 988. It’s free. It’s available 24/7.

We’re on BlueSky at @DepreshMode. Our Instagram is at @DepreshPod. Our newsletter’s on Substack. I write that every week, and it’s free to subscribe. So, just search up Depresh Mode or John Moe on Substack. You’ll find it. I’m on BlueSky and Instagram at @JohnMoe. Join our Preshies group on Facebook. Just search up the word Preshies. It’s a great group of people talking about the show sometimes, talking about mental health, supporting each other, a lot about dogs. And I’m over there too. So, let’s go hang out on Facebook. Just search up Preshies. Our electric mail address is DepreshMode@MaximumFun.org.

Hi, credits listeners. I’ve recently been teaching writing classes, and I discovered something about that. See, before I did podcasting or radio, I was an actor. And when I started doing radio and felt unsure about myself, I simply acted like a radio guy. You know, a newscaster. And no one knew the difference, because there was none. And now I act like a teacher, and it’s working. It’s a surprisingly effective lifehack!

Depresh Mode is made possible by your contributions. Our production team includes Raghu Manavalan, Kevin Ferguson, and me. We get booking help from Mara Davis. Rhett Miller wrote and performed our theme song, “Building Wings”. If you ever have a chance to see Rhett Miller play live, do it. Because your life will be better. Depresh Mode is a production of Maximum Fun and Poputchik. I’m John Moe. Bye, now!

 

Music:

I’m always falling off of cliffs, now

Building wings on the way down

I am figuring things out

Building wings, building wings, building wings

 

No one knows the reason

Maybe there’s no reason

I just keep believing

No one knows the answer

Maybe there’s no answer

I just keep on dancing

(Music fades out.)

 

Daryl: Hi, I’m Daryl from Scotland, and you are not alone in this.

Transition: Cheerful ukulele chord.

Speaker 1: Maximum Fun.

Speaker 2: A worker-owned network.

Speaker 3: Of artist owned shows.

Speaker 4: Supported—

Speaker 5: —directly—

Speaker 6: —by you!

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