Content Warning: Mental health, self-harm
If you’d like to listen to or watch our interview with Esmé, the episode is available on YouTube, Spotify, and Apple Podcasts.
- Award-winning writer Esmé Weijun Wang discusses her journey with schizoaffective disorder and how that’s shaped her writing work and advocacy.
- Esmé shares her experiences as a Taiwanese-American, queer, and disabled writer, emphasizing the importance of representing marginalized voices in literature.
- She founded the Unexpected Shape Writing Academy, offering accessible resources and classes tailored to individuals with limitations, making writing education more inclusive and accessible.
- Esmé's approach to teaching and mentoring writers reflects her commitment to helping them work with their differences and find their unique voices.
- The interview delves into her book "The Collective Schizophrenias" and how it contributes to a broader conversation about mental health.
Vanessa: Hi and welcome to Brainstorm | Changemakers by Tiimo. In this series, we're talking to experts, activists, and movers who are shaking things up in the neurodivergent space. My name is Vanessa and I'm the head of Brand Communications at Tiimo, a Denmark-based startup that gives neurodivergent people the planning power to take charge of their day and feel validated at work, at home, and in their communities.
Today we're joined by Esmé Weijun Wang, an award-winning writer, speaker, and advocate. Esmé is the author of the bestselling essay collection "The Collected Schizophrenias," for which she received the prestigious Whiting Award for nonfiction. Esmé is also the founder of the Unexpected Shape Writing Academy, a dedicated online space for writers with limitations. Esmé, thank you for joining us here today.
Esmé: Thank you so much for having me. It's so great to be here.
Vanessa: Esmé, you were diagnosed with schizoaffective disorder after a long and complicated journey through the US mental health care system. Could you tell us a bit about that? And also, for those who don't know, explain what it means to have schizoaffective disorder.
Esmé: Yeah, so I'll first explain what schizoaffective disorder is, because I think that's a good kind of starting place. I like to describe it as a combination of schizophrenia and a mood disorder because that's essentially what it is. If somebody has a mood disorder such as depression or bipolar disorder and they experience psychosis—and also, I'll talk about what psychosis is—the psychosis happens in a mood episode. So, for bipolar disorder, in a manic episode or in a depressive episode, or in the case of depression, during a depression. And schizoaffective disorder, though, there are different types. So there's the type with just depression.
I happen to have the one with both mania and depression. So when I'm not in an episode of mania or depression, I will have episodes of psychosis in between instead of during those mood episodes. And psychosis is just very simply described as seeing things or experiencing things through your senses that aren't really there. And that can be anything from things you hear to things you see or things you smell or feel.
So that's my kind of basic explanation of what schizoaffective disorder is. And I call it something under the broader umbrella of the schizophrenias, which are schizophrenia and all of its related forms. So in terms of how I got diagnosed, as you can probably tell, it took a really long time for me to get diagnosed from my very first time visiting a psychiatrist, which was when I was about 16 or 17.
So I was first diagnosed with depression and anxiety. When I was 18, I was diagnosed with bipolar disorder, and then when I was in my late twenties, early thirties, I was diagnosed with schizoaffective disorder, bipolar type. And I think there are a number of reasons it took so long for me to get the diagnosis that finally stuck or has stuck to this point. One reason is simply that bipolar disorder does not typically develop until you're in young adulthood, and the schizophrenias tend to not develop until you're about in your twenties. So it was just purely getting older that caused these different diagnoses to pop up. But for the schizoaffective disorder, I personally knew I had schizoaffective disorder for a significantly long time before I got the formal diagnosis, and I think this was in large part because my psychiatrist didn't want me to feel stigmatized.I think it's a very heavy diagnosis to have. It can cause problems with legal matters if your medical records have to be unsealed or other issues. And so I didn't actually get that diagnosis for quite a while.
Vanessa: And as you just pointed out also in interviews, these kinds of diagnoses like bipolar disorder or schizoaffective disorder first tend to appear the symptoms when you are in your twenties. That's the sort of time when you are beginning your college education and that was the case for you. I wanted to ask you, how did the educational system support or fail to support you?
Esmé: Yeah, so the first college I went to was Yale University, and I have an essay in my book called "Yale Will Not Save You," which is about my experience going to Yale and what happened. Essentially, when I got to Yale, there was no talk about being a disabled student. This was not something I thought was unusual because it was the first time I'd ever gone to college. I didn't know that. But there were essentially no disability services that I knew of or would have known to seek out. Also, when I was hospitalized for the first time in my freshman year, they told me I would either have to leave for a semester or I would have to have my mom come out and live with me or a parent come out and live with me for the semester.
Not everyone's parents can do that, but my mom actually was able to do that. And so she came and we moved into an apartment because again, they wouldn't let me live on campus for a semester. And then that happened again in the next year, in my sophomore year, my second year in college. And so that was the point where they were like, "You have to leave, you're going to leave, and then you can apply to come back." But we may or may not let you come back. So I left and I did all the things that I felt that they told me to do. And then I flew back out to New Haven and I did a day of interviews. I think it was something like 5 to 8 interviews that took all day. And then I waited for weeks and weeks and they finally called and just said, "We can't readmit you." So you can either wait for another semester or you can do something else. And I chose to do something else. So I ended up going to Stanford. But when I asked them what was it about the process that I didn't pass, they said, "That's confidential and we can't tell you." So it was just a very difficult process. I was diagnosed in the summer before college started and I wasn't put on medication until I got to college.
I was being monitored with these blood tests to see if I had enough of the medication in my system to see if it was a therapeutic level. And I was not told until one day they called me and said, "Hi, we're the lab at the clinic. And we just wanted to let you know that, I don't know if you know this, but your levels have never been therapeutic the entire time you've been on this medication." And it was around that time that I was having a really bad episode. And so at that point, I was like, "Something really wrong has happened here." And so it was not a very supportive environment. Before I even was hospitalized, a fellow student told me or gave me the advice, "Never tell them you're thinking of killing yourself, even if you are, because it's not going to be good for you." And I didn't quite take that advice to heart. And that is what led me to become hospitalized, was expressing that I had been thinking about hurting myself in that way.
There have been a lot of changes since then. I wrote about that years ago and I continued to advocate for that. Different policies, at least to have like a universal policy among colleges and universities to help students who are living with mental illness but it wasn't until very, very recently about this year that Yale started actually changing its policies. And they did invite me back to give a talk. So I did that earlier this year, 2023.
Vanessa: So policies meant to support and help. And you probably have never received from Yale an explanation.
Esmé: No, never. It's really funny because people ask me, "So have they ever apologized to you?" And I was like, "No, of course not. They would never. They don't even acknowledge me as a former student, which, you know, I guess that's fine. I went to Stanford. Yeah.
Vanessa: I am amazed that they only started implementing new policies this year.
Esmé: Oh my gosh. Yeah. My graduation year was going to be 05, 2005 and it's 2023. It is eighteen years later and it took this long.
Vanessa: I wanted to ask also whether or what changed for you after your diagnosis of schizoaffective disorder, which you received in 2013? What was the aspect, I mean, you talked about even your psychiatrist being concerned about the stigma surrounding this. How did you cope with that?
Esmé: So by the time I was diagnosed with schizoaffective disorder, I had already gone through the process of getting big diagnoses before, like I said, depression and anxiety when I was 16 or 17 and bipolar disorder.
So by the time I was diagnosed with schizoaffective disorder, it was more of a relief than anything for me. So in the book, my book, "The Collective Schizophrenias," I say something like, "Some people don't like diagnoses, disagreeably calling them labels and ways of putting us in a box. But I like to know that I'm not pioneering an inexplicable experience," and that's really how I feel about it, is it would be so much scarier to me if I were experiencing something that was never experienced by another human being in the world. But to know that the things that I was experiencing had a name and that other people had it and I could learn more about it, was really actually just a relief. Mostly.
And I may, we may, we can talk about this later, but I am actually in the assessment process for an adult Autism assessment, which is very new for me. I didn't know about this or I didn't suspect this, and nobody mentioned it to me when I was writing "The Collective Schizophrenias." So that process is very, very different from being diagnosed with a mental illness like bipolar disorder or schizoaffective disorder. So psychiatry is still a very nascent field, and all of the diagnoses are basically just things made up by humans. They look at a group of people who have approximately the same symptoms and then they put a label on it. And so there is no kind of etiology, there's no blood tests, there's no brain tests, there's no kind of more biological tests that they can do. So what they do is just talk to you and listen to discuss your symptoms, and then they figure out what condition best matches.
That's until they have that, or even up until you have that, they're really treating the symptoms. So even for years before I was formally diagnosed with schizoaffective disorder, they were still treating me with antipsychotic medications. I just didn't have that formal diagnosis.
Vanessa: So you have actually a sort of a clinician or research lab background which feeds into "The Collective Schizophrenias," which was published in 2019, and is this blend of personal experience with rigorous research and cultural observation. When did the idea of this book come to you? Was this a longer process?
Esmé: It started when I wrote my first essay in the book, which was "Perdition Days." It was an essay that found a home in this defunct website called The Toast. I got $50 for it, and it weirdly became a big hit, just went a little bit viral during its time. So I was then interested in writing more about the experiences that I was going through and just researching things that I didn't know about the schizophrenias. And the more essays I accumulated, the more I was interested in putting a book together. Long story short, my agent at the time was not interested in representing me for this book, and she did not think the book was a good idea. I ended up submitting it to a contest called The Gray Wolf Nonfiction Prize, and they selected it. And that's why it's published is because Gray Wolf, which is a small press here in the United States, picked me out of a contest, otherwise it would not have been published. So that was a very, very fortunate thing. And that really was kind of the beginning of the entire book was writing one essay, finding that people found it interesting, and then just kind of going down this rabbit hole of writing more and more essays about the schizophrenias.
Vanessa: It had an incredible reception. The book, you didn't expect that I assume.
Esmé: No, not at all. It was a New York Times bestseller. When they told me that, I was like, "What? Are you sure?" Cuz this was published by a really small press, like, really small compared to the Big Five or, I don't even know if they're called Big Five anymore, but since there was a merger. Yeah, but with Penguin, Random House, I believe, HarperCollins, it was a small press and I was so surprised. It was a bestseller and it stayed on the list for a few weeks and that was very exciting to me.
Vanessa: And ignited a huge discussion. And for our listeners and viewers, it would be lovely if you could read an excerpt from "The Collective Schizophrenias."
Esmé: So I'm just going to read a tiny, tiny bit from the first essay, which is called "Diagnosis."
Schizophrenia terrifies. It is the archetypal disorder of lunacy. Craziness scares us because we are creatures who long for structure and sense; we divide the interminable days into years, months and weeks. We hope for ways to corral and control bad fortune, illness, unhappiness, discomfort and death – all inevitable outcomes that we pretend are anything but. And still, the fight against entropy seems wildly futile in the face of schizophrenia, which shirks reality in favor of its own internal logic.
People speak of schizophrenics as though they were dead without being dead, gone in the eyes of those around them. Schizophrenics are victims of the Russian word гибель (gibel), which is synonymous with “doom” and “catastrophe” – not necessarily death nor suicide, but a ruinous cessation of existence; we deteriorate in a way that is painful for others. Psychoanalyst Christopher Bollas defines “schizophrenic presence” as the psychodynamic experience of being with a schizophrenic “who has seemingly crossed over from the human world to the non-human environment”, because other human catastrophes can bear the weight of human narrative – war, kidnapping, death – but schizophrenia’s built-in chaos resists sense. Both gibel and “schizophrenic presence” address the suffering of those who are adjacent to the one who is suffering in the first place.
Because the schizophrenic does suffer. I have been psychically lost in a pitch-dark room. There is the ground, which may be nowhere other than immediately below my own numbed feet. Those foot-shaped anchors are the only trustworthy landmarks. If I make a wrong move, I’ll have to face the gruesome consequence. In this bleak abyss the key is not to be afraid, because fear, though inevitable, only compounds the awful feeling of being lost.
That's just a little bit from the very beginning of the book.
Vanessa: Thank you so much. You touch on this also in your essay. But there is this myth perhaps, especially regarding writers, that mental illness can fuel creativity, can heighten perception, and in this sense that your mental illness is a gift in a way inseparable from your talents. What is your take on this?
Esmé: I personally do not like this narrative. I think it takes away from me as a person and what I have done to become the writer that I am. It also, I think, takes away from the incredible amount of suffering that happens with these mental illnesses. Often a major symptom that has to be there for these to be diagnosed is some kind of impairment to your life or some sensation of suffering. And so schizoaffective disorder has caused a great deal of suffering in my life. And I do not think that for the most part, experiencing that suffering is a good way to be a writer. Like I find that when I'm in the worst of it, I cannot write anything. I did manage to write "Prediction Days" when I was going through it, but I didn't write the whole thing. It was kind of bare bones and it was really a way for myself to get through the experience.
But for the most part, I feel it's more of a hindrance than a bonus. What I will say is that I do think I have received some interesting experiences from having schizoaffective disorder and my various other neurodivergences, but they are not useful in the moment. They're usually only useful if I look back on them and try to make those into some kind of art.
Vanessa: And you said something interesting and I think something rather unique. And I quote, "I believe that living with limitations is something that can exist alongside an ambitious life." I think this is a wonderful quote. And I wanted to ask if this is something you always held, that belief, or is this something that was really hard won in that journey that you went through?
Esmé: Yeah. I mean, this is, yeah, it's a lifelong process. I think I came to that realization when I went through my life because I was first a very ambitious child. I was raised with high expectations, I was raised with high expectations for myself. And so when I was diagnosed with these things and was going through really hard times with my mental health, I didn't know what to do with that ambition that I had because it didn't go away just because I was very sick. So I tried to find ways to live with schizoaffective disorder and the other kind of mental conditions that I have and physical conditions that I have because I have a whole variety of them. Interestingly, I don't like to think of myself as overcoming them because that's something that a lot of places will say if they're writing about me, they'll be like, the headline is, "Esmé Weijun Wang Overcomes Limitations" or something like that.
And I don't think it's really overcoming the limitations. It's more like you're living inside of the limitations. And that's what my business, the Unexpected Shape, is all about. It's all about the unexpected shapes that we encounter in our lives, the boundaries that we have in our lives, and what we make inside of those unexpected shapes.
Vanessa: And given these unexpected shapes. So what does that unexpected shape look like for you? How do you define success when you are chronically ill?
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