Anita Rao
0:02
My college romance was born from a shared love of deep thought and analysis. I was often overflowing with excitement about something I'd learned in a women's studies class. And he was geeking out about philosophy, psychology, and theory of mind.
He spent two summers working alongside a clinical psychologist recording life narratives of people with schizophrenia. He'd tell me, in a totally HIPAA compliant way, about what happened in the room when people seeking treatment for psychosis were asked open ended questions about their internal worlds. Not, "Do you have the symptoms, yes or no?" But, "What is your life story from the beginning?"
As he continued to do this work, and I continued to do mine, we found a common problem in both of our fields, psychology and journalism. The impulse to search for a resolution, whether that be the end of a story in my case or a specific diagnosis and treatment plan in his, was far too simplistic. There was so much more to learn from lingering in the messiness of reality for as long as we could.
This is Embodied, our show about sex relationships and your health. I'm Anita Rao.
Self narratives of people with schizophrenia spectrum disorders are used as a research tool. There are very few published accounts in which people living with schizophrenia relay their own stories. But I'd like to share one of them with you now.
Esmé Weijun Wang
1:39
I'm still trying to figure out what okay is. Particularly whether there exists a normal version of myself beneath the disorder, in the way of person with cancer is a healthy person first and foremost. In the language of cancer, people describe a thing that invades them so that they can then battle the cancer. No one ever says that a person is cancer, or that they have become cancer, but they do say that a person is manic depressive or schizophrenic once those illnesses have taken hold.
In my peer education courses I was taught to say that I am a person with schizoaffective disorder. Person first language suggests that there is a person in there somewhere, without the delusions and the rambling and the catatonia.
But what if there isn't? What happens if I see my disordered mind as a fundamental part of who I am? It has, in fact, shaped the way I experience life. Should the question be a matter of percentages of my lifetime? I've spent enough of this lifetime with schizoaffective disorder to see it as a dominant force. And if it's true that I think, therefore I am, perhaps the fact that my thoughts have become so heavily modelled with confusion means that those confused thoughts make up the gestalt of myself. This is why I use the word schizophrenic. Other many mental health advocates don't.
Anita Rao
3:15
That's writer Esmé Weijun Wang reading from her book, "The Collected Schizophrenias." When I first came across as Esmé's work, I was struck by that title. "The Collected Schizophrenias."
Schizophrenia, schizoaffective disorder, and schizotypal personality disorder are all names of diagnoses, and they all have symptoms in common. Like hallucinations, delusions, loss of motivation, difficulty expressing emotion, and trouble with memory, concentration, and attention. So you can think about the schizophrenias as a spectrum, or as Esmé describes it, a color wheel. One person might have more of one symptom and less of another, just enough to push them into a certain diagnostic category.
All of this variation is something Esmé has learned both because of a deep curiosity about psychology, and her own lived experience. She was diagnosed with bipolar disorder as a teenager right before she moved across the country to go to college. Her first psychotic symptoms showed up a few years later when she was in her early 20s.
Esmé Weijun Wang
4:20
So when I was at Stanford, I experienced my first hallucination. It was a voice speaking directly into my ear when I was taking a shower and it said, "I hate you."
Anita Rao
4:32
From that moment on, Esmé started experiencing more visual and auditory hallucinations. Her psychiatrist changed her medication, but she didn't get an official diagnosis of schizoaffective disorder until eight years later.
Esmé Weijun Wang
4:45
I think that a big part of that was my psychiatrist's unwillingness to cause me to feel more stigmatized than I did at the time. I think my psychiatrist believed that I was at fairly, quote, unquote, high functioning person, and preferred to have me continue with my old diagnosis, especially because psychiatry, it does diagnose people but it mostly treats in terms of medication, the symptoms, and not a more broad ideological vision of illness.
Anita Rao
5:22
So you've had a variety of diagnoses over the course of your life. And because of this, and because of the variety of kinds of positions that you've occupied in the world, as a student and being someone in working settings and being someone in hospital settings, you've observed this kind of hierarchy in how folks with various mental illnesses are treated. And I'd love for you to talk about this from your perspective, and why you think it's so prevalent both in culture and even within medicine.
Esmé Weijun Wang
5:50
I think of two main things when you ask me this question, and the first one is actually being in a psychiatric hospital. I think that in an inpatient setting, when you're living with a lot of people with lots of different mental health diagnoses, there is this hierarchy that comes out where you realize that people who are most, quote, unquote, normal, for example, diagnosed with depression, or some kind of very severe anxiety are considered at the top. And people who have the schizophrenias is are considered at the bottom because of the break from reality that happens with psychosis. This is also something that you see, for example, in a Facebook meme that I saw a few years ago. It was some kind of diagram of the pros and cons of illness, mental illness in particular. And I did notice, even before I scroll to the bottom of the meme, there were not going to be any pros in the column for the schizophrenias because it's thought of as a horrible illness with no positive aspects to it. So I think that in that setting, where you're looking at a Facebook meme, and it's social media, it's a very widespread belief.
Anita Rao
7:10
As you have navigated your symptoms over this long period of time, you've reflected that sometimes you can't hide what you're experiencing from people even if you're really self aware of it. It's obvious in your physical movement, in how you're acting. I'd love for you to share how you manage that in your social and romantic relationships.
Esmé Weijun Wang
7:30
The people who are closest to me know what I'm experiencing, when I'm experiencing it. And I also tried to be fairly open about what's happening. I went through a phase where I was doing a lot of ducking and dodging and jumping because of things that I was hallucinating flying at my head or opening up in front of me, such as a huge abyss. And this caused me to have to tell people in my life what was happening, because, obviously, there was no huge abyss. There were no shadowy figures flying at my head. But my body was having such a natural reaction to those things and would instinctively duck and dodge. And so the people in my life knew what was happening.
And I particularly remember this one evening, when a friend of mine and my then partner now husband were walking down a sidewalk and something flew at my head, it was not really there. I ducked very dramatically and they just watched it happen and we just kept walking and talking as though nothing had happened. And I remember just feeling such gratitude for the loved ones that were with me on that walk because they didn't make a big deal out of it. We just kept going.
Anita Rao
8:52
Friends and family who take psychotic symptoms in stride are a big departure from what we've seen in many western popular culture portrayals of schizophrenia. The disorder has been the subject of horror films and sensationalist newspaper headlines, creating fear and stigma. But alongside Esmé, other folks with schizophrenia spectrum diagnoses are challenging some of our long held assumptions. Take for example, this story on TikTok.
Christopher Grant
9:25
It took me years to realize that voices were a lot like billboards on a highway. Just because a voice suggests something to me, doesn't mean I have to listen to it and mindlessly enact it. Like, if I see an ad for subway, I don't have to go eat there. When I started treating the faces and voices in this way, it shifted the whole dynamic of how they behave. Instead of allowing them to control me, I was instead working with it. It was hard work at first because of the initial paranoia darker voices can give you, ut as I slowly worked through it the task became easier. I didn't want to shut them out entirely because I can't. But I didn't want to be a catatonic puppet to them either. And it took a lot of introspection, difficult nights of facing my reality, and finally accepting, "Hey, I hear voices. So what."
Anita Rao
10:18
The creator of that video is xoradmagical, also known as artist and animator Christopher Grant. You'll find the link to that video in our show notes. His bold black and white animation style is amazing. Chris is in his mid 20s, he started experiencing symptoms of schizoaffective disorder in his late teens while he was in art school.
Chris Grant
10:40
I started having these experiences, where I started hearing things suddenly scuffling or like leaves scattering, or like things scratching or clicking. And I didn't know where these noises were coming from. And as time went on, I started to hear whispering in the vents at my apartment and university.
And it got so overwhelming that I had to leave my university. I dropped out. And I kind of from there went on the road. And I wasn't like in school anymore. I didn't live at a house, I was just on the road sleeping under bridges and drawing the whole time. And it was only until the fall of 2017 when I had an ex girlfriend who got me from out of that kind of experience and back home, that I was able to go see a doctor, go to the psychiatric unit. And then I was diagnosed with schizoaffective disorder. So that was how my journey started.
Anita Rao
11:41
I know that you have a twin brother and I believe that y'all were living together at the time that your symptoms first started. I'd love to know how much you shared with him about what was going on and what that was like for your relationship?
Christopher Grant
11:54
Well, the thing that's so weird about it is that when it starts you want to tell a lot of people, at least I did. Because the experience is so jarring and sudden, you want to compare. You want to be like, "Did anybody else experience this?" And so I wouldn't mention exactly what I experienced to my brother, but I would be like, "Hey, you know, isn't it kind of a weird vibe in the house?" And he'd be like, "What do you mean?"
And so I just started to talk more in that language, like, "It's a weird vibe in here," or "Something feels uncanny or off." And, you know, throughout the experience, though, of leaving university and going through— on the road and all that I actually got closer with my brother and my sister, because anytime they got a chance to see me it was like all love, so. [Laughs]
Anita Rao
12:05
You were going through, obviously, so much transition both very logistically, you know, leaving college, experiencing houselessness, trying to work through these symptoms. And in this period you began to turn to art as a tool for processing. You obviously already were an artist, you were in art school. But art and drawing became a kind of release for you. Something you'd turn to in a really immediate way. Even if you were, like, driving to the beach and you started to experience some symptoms, you would pull over and start drawing. Talk to me more about the role that it plays for you in the moments when you're experiencing symptoms.
Christopher Grant
13:20
Drawing and art has given me an outlet that is unbelievable for me in kind of, like, maintaining my health and my day to day. Because I'm a true believer in self expression. I think that you can't just keep everything caked up inside because it's going to eat you alive. And I find with schizophrenia, the stakes are raised a little bit with intensities. And so I really have to watch myself.
And so to have an outlet, whether it's a drawing or playing music or putting it film together, having that outlet has saved me so many times. Especially if I'm driving and I get a moment where it's like, "Oh, things are getting weird, I need to pull over." I will pull over and my first instinct is to just doodle or draw or scribble because it starts to get that energy out through my hand and onto the paper. And so it's a transfer. And when I transfer that energy, and then there's an art piece out of it, it's kind of like a little reward because it's like, "Look what you you did out of that energy."
Anita Rao
14:31
I'd love to ask you Esmé about this transfer of energy piece. I know that you wrote a few chapters of your book in phases where you were experiencing a lot of really intense symptoms. How does writing and creativity work in that role for you, or does it?
Esmé Weijun Wang
14:46
It was so interesting to listen to Chris talk about the experience of having psychosis because as I was listening to him, I was thinking, "Oh my gosh, this sounds so ordinary. It sounds so as normal." And so anyway, for my experience, I think that that's something that's important for me as well, is to take these really amorphous experiences, these sometimes bizarre and amorphous experiences, and fixing them into words and language, which is a concrete thing. So you end up with a drawing, or you end up with a piece of writing. And those are much more concrete than the kind of sometimes frightening, very unusual experiences that we can have.
Anita Rao
15:32
I want to pick up on what you just said about the sometimes frightening and not always, because Chris, that's something that you talk about. You have auditory hallucinations, often they're speaking in glossolalia, which are essentially sounds that aren't quite words. And you've said that there's a huge emotional range that you experience. Sometimes it's really intense and dark, and sometimes it's lighter and more playful. Can you talk to us a bit about that range for you?
Christopher Grant
15:57
I live with bipolar schizophrenia. So the bipolar part is always like, "Yes, no, yes, no black, white, black, white." And so I had to find a way to balance that within my own mental temperament. And so there's hallucinations that come out that are very like, "Hello (In a goofy tone)." Like, they're all excited and, like, talking at me and saying, "Draw us, draw us, draw us." And so I do. I draw them because I don't feel a threat or psychological threat from this apparition or this hallucination. Because I know that it's an extension of me, perhaps, and it's just mirroring back to myself. And so even if something is frightening, or makes me nervous, I look— I kind of, like, sit and breathe, look within myself, and I go, "Oh, okay. It's not me, in a sense that I'm not evil, but it is a part of me. And so I have to integrate it." And so it's a lot about integrating the stuff that scares you.
And so hallucinations used to be taunting and, like, chase me around and, like, "Oh your friends are gonna hate you." And over time, they just became these like, "Draw us, keep drawing, draw us." And I think it has to do with choices I've made mixed with the schizophrenia and self expression. So my experiences, though uncanny to some people and scary to some people, if you live with schizophrenia, and you know what I'm talking about with, like, voices, hallucinations, some of them can be comforting, and some people don't like to hear that. But it's an honest truth about the lived experience, at least for me.
Anita Rao
17:44
Chris makes sense of what's going on in his brain through drawing and animation, Esmé through words. Her book contains a series of essays about various moments in her life with schizoaffective disorder. Including one called "Perdition Days," where she describes a period in which she believed she was dead. This is actually a symptom of some mood and psychotic disorders called Cotard's delusion, or Cotard's syndrome. She writes, 'During the perdition days, which had no rhythm to them, I could not summon the motivation to do anything. I would not eat, I often would not move.' Just recently, Esmé was approached by a documentarian who was exploring this particular delusion, and they flew her to Amsterdam to talk more.
Esmé Weijun Wang
18:33
So I went to Amsterdam, and I met with the documentarian and a choreographer that they were working with who was helping to collect movements. And so I did this interview with the choreographer where she asked me several questions like, "What does it look like in your body when you are experiencing this kind of psychosis? How do you move your feet? How do you wake up? How do you get up from sitting to standing?" And we did this long interview, I went away back to the hotel, and then when I came back I had a private performance for just myself—
Anita Rao
19:11
Wow.
Esmé Weijun Wang
19:12
and the documentarian. And yeah, the dancer did a performance that was completely made up of my movements, and it was incredibly moving. I had never seen anything reflected back to me like that before.
Anita Rao
19:26
Chris, I'm curious about kind of a similar question to you, but more through your social media. You obviously tell a lot of your story on TikTok and chronicle moments when you're experiencing symptoms, when you aren't. What has it been like for you to kind of look back and see yourself express your experience with schizophrenia at different moments of your journey now that you've chronicled so much of it so publicly?
Christopher Grant
19:51
Well, for one thing, I'm very proud of myself just for saying something because I was the kind of person that was really shy to, like, talk about it. As I started to post more and more and more, I started getting emails from people all over the world saying, either, "Thank you," or "Can you help me with this?" And that made me feel very much like I'm doing a purpose. And the purpose is to live by example and show that, you know, "Hey, I have schizophrenia, it gets a little weird sometimes, but I'm breathing. I'm here. I'm eating pizza. It's okay. And so it's mirrored back in so many different ways that it's just, it's got a life of its own.
Anita Rao
20:32
I would love to close reflecting with you both on uncertainty. I know that you have been asked the question, you know, "How do you know if you'll have another psychotic episode?" And you don't know. And you're really open with people and with yourself about that. How does this uncertainty shape how you plan for your day to day life? Chris, I'd love to hear from you.
Christopher Grant
20:54
Well, the uncertainty of it is very haunting, I will give you that. Because it's happened to me about three times that I've gotten in a spiral of psychosis that I would say I completely lost it. Three times it's happened to me, and every time it happens to me, either I lose friends or family gets afraid of me or I have to restart from like a ground zero point, you know? And so, nowadays, whenever I live my life, I live a very simple life, a very just, like, "Do I have my cigarettes? Do I have my coffee in the morning? I'm gonna go for a drive. I have to work today." And I try to keep it at that balance of just day to day real life, like, you know, reality, as best as I can. But whenever it's the off hours, and I'm just drawing, and I'm alone, I let a little bit of that out. And I'm able to be both worlds. I can be responsible Chris for my family, and people need me. But then I can have moments where I'm just alone in my house, and I can be me or whatever you want to call that, like, crazy, or. But for me, it's just pure expression.
Anita Rao
22:09
Esmé, you've talked a bit about how you navigate the day to day in terms of writing and work and balancing your time. But you got some insight into this kind of bigger picture uncertainty question during your husband's cancer journey. When a lot of people were kind of giving advice about like, "Should you live every day like it's your last?" And you all were really navigating these questions. What did you learn about kind of making the most of the moment when you're living in so much unknown?
Esmé Weijun Wang
22:35
Yeah, I think that the thing that you were just referring to, should I live every day as if it were my last, I reached out to a friend who also is living with cancer, a very similar cancer to my husband. And I was just asking, "How should we be moving forward? How do we live day to day? Should we be living every day as if it were our last?" In his case because cancer is often fatal. And for me, because I don't know when I'll have another episode of psychosis or some other element of my mental illness.
And so my friend replied, "I try not to live every day as though it were my last but to live it as though every day we're a new beginning." And so to approach the world with a sense of wonder is a more healthy way, I think, of living with these illnesses. It's hard to live every day as though you have to cram everything in because the next day won't be there for you. It's different to live a day as though you are a newborn who has come into the world and is so awed and amazed by life and everything around you. So yeah, I think that the kind of latter approach has been more helpful for us.
Anita Rao
24:06
In the work we do on the show researching so called taboo topics, the Internet can be an intimidating place. It's often an echo chamber of negativity or criticism, dis and misinformation. But if you keep digging, you can also find a lot of gems. People like Esmé and Chris, who are boldly sharing their life stories and all of their complexity. We had that same feeling when we came across the blog, Overcoming Schizophrenia, run by Ashley Smith.
Ashley Smith
24:36
It's always been therapeutic to me just to express myself, get my thoughts out of my head and to get a sense of clarity and self expression. I was actually blogging anomalously, and I just felt comfortable and confident in my space, learning about my diagnosis, doing research about it and sharing my story. And the thing is I got so comfortable with my recovery experience that I actually decided to share my name and attach it to my blog.
Anita Rao
25:10
Ashley is now a peer counselor and mental health advocate. And she's generous with advice and encouragement on her blog. She started the site in 2008, just one year after getting a diagnosis of schizoaffective disorder. She was 20 at the time and wrote about everything from her early journey with medication and therapy, to big questions like, "Why do I deny my illness?" Five years later, she started writing about another big life transition she was going through, becoming a parent.
Ashley Smith
25:40
I've learned so much on this journey of being a mom, and I'm enjoying it. My son is now 11 years old. I'm still working on making sure that he's aware of what schizophrenia is and what it's not. And I just want him to have a better understanding unlike the general public. Because there's so much misinformation out there, I want to make sure that he feels comfortable and knowledgeable with what I'm dealing with, and what we're overcoming together.
Anita Rao
26:11
I would love to know a bit more about when you first started talking to him about mental health. Do you remember any of those early conversations?
Ashley Smith
26:19
A little bit, yes. We have this rule. So whenever he's talking, he's like, "Is it okay if I use the C word?"And the rule is, of course, don't use the word crazy at home. And so that's just some little conversations that we've had. And I want to make it clear to him what my diagnosis is. So I tell him, "It's when I'm, you know, not acting like myself." Or I may say, like, when it comes to medication, "I take my medication to continue to stay well." And so I just feed him bits and pieces of what's going on with me. And it's so strange and wonderful at the same time that kids are like sponges literally. And so he sometimes catches me before I catch me. He's like "Mom, like you, okay? You look tired." So he'll say things like that. I'm like, "Oh, wow. Okay. He's in tune with me." And so that conversation is more than a conversation. It's our connection. It's our bond. It's trust. It's understanding. It's love.
Anita Rao
27:17
You mentioned his ability to almost point out what he's seeing in you before you may be aware of it yourself. And there was a specific moment that happened, I think, when your son was four years old, where he mentioned something about your diagnosis and it caught you a bit off guard. Could you tell us that story? And what happened?
Speaker 4
27:37
Yes, oh my goodness. I was going through depression at that time and I was stuck in bed. And he would lay beside my bed and play with his toys and his cars and everything. And he said, "Take your medication and go to sleep mommy." And that was so hurtful to me. I almost forgot about that incident. But it was an eye opener. I was like, "Oh my gosh, I need to continue to stay on top of this because I don't ever want him to tell me something like that again." And it just speaks volumes to how kids are so aware, unconsciously and consciously, of what's going on around them. Especially with family members and their parents and siblings, things like that.
Anita Rao
28:21
You've had a number of hospitalizations since your son was born. And I'd love to know a bit about how you communicated with him about those when he was younger, and he maybe didn't have as much clarity about what was going on. What did you tell him? And how did you strike that balance of giving him information and making him feel safe?
Ashley Smith
28:39
Yes. Since I was diagnosed in 2007 I've had three hospitalizations. My last hospitalization was earlier this year of 2023, unfortunately. Though, with these hospitalizations I learn a little bit more about myself, and how to manage and get through and just take it day by day. When he was younger, I explained to him about my hospitalization as just getting well, I didn't talk about it negatively. And I'm very fortunate to have had my family nearby so that he can be taken care of when I was in the hospital.
Anita Rao
29:19
You've been cautious about how much you share about your diagnosis and about your hospitalizations with his school and his teachers. And there was a hospitalization at one point where he missed some school and you needed to get those absences excused, but you didn't want to give the school all of the information about your diagnosis. Could you talk a bit about that and what that process was like for you?
Ashley Smith
29:42
Yes. Going through hospitalization, it takes a toll on the whole family. Including him with his schooling, with the tardiness and absences and things of that sort. And so to validate and to get them excused, I had to show proof. But because of the stigma attached to schizophrenia, I did not want administrators and teachers having pity for him or making assumptions or thinking that he was not well taken care of, or just singling him out. And so I did show proof of my hospitalization but I had to literally mark everything up in black marker and just cross everything out. It was a- another reminder. It's another reminder that I have a condition. It's another reminder that most people do not understand. Yes, we've come a long way, but we have much more to go.
Anita Rao
30:34
So you mentioned that you have had experiences with hospitalizations, and one earlier this year. But you've also been able to find respite and times that you need it when you maybe know that you need to be able to manage your stress and you need some time away. And there are these respite centers in Georgia that have been a really important resource for you. Can you talk a bit about these and how they help you take care of yourself in moments when you're having a lot of symptoms?
Ashley Smith
31:01
Yes, Georgia does have respite centers and it's a great place, a great way to manage when we need some extra care. It's kind of like the place away from home, but not quite the hospital. They're a center that's welcomed to adults who have mental health concerns. And so we go there for our groups, we go there for our support, we go there for our different activities. But some of us can also stay overnight, to regroup to get some more me time, and then go back home. And so I've utilized these respite centers before. And I'm so grateful that we have them. I've stayed in them a couple of times. And I encourage other people in other states to practice the same thing with having these respite centers, as a way for people to regroup.
Anita Rao
31:49
As your son continues to grow up and your conversations about mental illness evolve, is there a particular tool that you hope that he has to talk about schizophrenia as he comes up against assumptions or stigma in his life or in conversations?
Ashley Smith
32:05
When my son gets older, I hope that he would share the facts, the truths about living with schizophrenia. That we can still live quality lives. That we can still live fulfilling lives. I want him to keep that— that fire burning that I have in me. That passion and understanding that, "Yeah, I have a severe health condition. But it's not the end of the world."
I've gone through a lot. I've hit some walls due to stigma, as far as my education, housing, but I'm still here. Everyone has some type of stigma attached or assumption or stereotype. But at the end of the day, it's manageable. It's doable. We're still here. We have much more to accomplish, much more to do. Don't let that word schizophrenia scare you, don't let it limit you.
Even though I'm still developing and growing in who I want to be and who I am, I'm still that same Ashley with the goals, with the heart, with the drive. I'm still that same Ashley. I'm just going through something that's a little bit different compared to most of society. But at the same time, I'm still that same woman. I'm still a same girl that had those hopes, dreams, and I'm still trying to accomplish them. And as long as I'm here I'm gonna keep trying to accomplish my goals and dreams.
Anita Rao
33:38
Embodied is a production of North Carolina Public Radio-WUNC, a listener supported station. If you want to lend your support to this podcast, please consider contribution at wunc.org now.
You can find more about all the guests we talked to today in the show notes of this episode. You'll also find links to essays from Esmé's book "The Collected Schizophrenia," Ashley's blog and books, and Christopher's TikTok account. Fair warning, it's going to be hard for you to stop scrolling.
This episode was produced by Kaia Findlay and edited by Amanda Magnus. Paige Miranda and Gabriella Glueck also produce for our show. Skylar Chadwick is our intern and Jenni Lawson is our sound engineer. Quilla wrote our theme music.
Thank you so much for listening to Embodied, and if you liked the show, tell one friend about it. Word of mouth recommendations are the best way to support our podcast.
Until next time, I'm Anita Rao taking on the taboo with you.