Refusing to Disappear: Life with Schizoaffective Disorder with Sarah An Myers | RDID; 209

“If I don’t communicate, I feel like I’m disappearing.” 

This is a bedrock principle that guides Sarah An Myers in her advocacy for schizoaffective disorder, her writing, and her life. She refuses to disappear, she refuses to be silent, she refuses to let others speak for her. Sarah An Myers lives with schizoaffective disorder, a mental illness that combines aspects of a thought disorder (hallucinations, delusions, psychosis) with symptoms of a mood disorder (mood instability, depressive or manic episodes). 

While schizoaffective disorder is an undeniable component of who Sarah is, she is so, so much more than her mental illness. She writes constantly, giving people a window into her unique and nuanced perspectives about mental illness and other topics, she lives independently, she cares for her dog, she takes fencing lessons, she travels around the world. Sarah's life is as bold and vibrant as the striking pink coat she wears in the film we made about her called "Thriving with Schizoaffective Disorder". 

In this episode of Recovery Diaries in Depth, our host, Gabriel Nathan, is joined not just by Sarah An Myers, but by filmmaker Glenn Holsten who directed that film about Sarah's life with schizoaffective disorder. In this vulnerable, intriguing three-way conversation, Gabe, Glenn, and Sarah talk about the creative process of documentary filmmaking, and Recovery Diaries' collaborative approach to creating a piece like "Thriving with Schizoaffective Disorder." Glenn and Sarah really worked as a team, both in pre-production conversations and during the shoot to create moments that felt authentic to Sarah's experience, like a subway shoot to let viewers see and hear what it is like to hallucinate, and an in-studio recording session where actors read aloud some of Sarah's auditory hallucinations.

Sarah speaks openly about what the experience was like, both making the film and then her anxiety upon its release. She also shares some of her very important views about the infantilization of psychiatric patients, the role medication has played in her life and recovery, and the work she is doing now. You won't want to miss this conversation with some extraordinary and creative human beings, doing vital work to de-stigmatize mental illness in new, original ways.

About Sarah:

Sarah An Myers is a writer, mental health advocate, and creative living in New York City. She writes a column on Psychology Today about psychotic disorders, reporting on the latest and cutting-edge research to combat stigma. She has written for human rights, freethinking, psychiatry, and literary publications including Free Inquiry, The Brooklyn Rail, Open Minds Quarterly, Psychiatry at the Margins, and more. She earned her MA in behavioral neuroscience from the University of Missouri-St. Louis and her MFA in creative nonfiction from The New School. She recently finished a literary memoir on living with schizoaffective disorder and is looking for an agent. Find her on social media @sarahanmy. 

Conversations like the ones on this podcast can sometimes be hard, but they’re always necessary. If you or someone you know is struggling, please consider visiting wannatalkaboutit.com. If you or someone you know is considering suicide, please call, text, or chat 988.

https://recoverydiaries.org/

Transcript

Welcome And Mission

Gabe Nathan 0:00

Hello. This is Recovery Diaries in Depth. I'm your host, Gabe Nathan. Thanks so much for joining us. We're very happy to have you here. We are so happy to have on the show today two guests. Our first guest works with me and us here at Recovery Diaries. He's Glenn Holston of Fresh Fly Films, an extremely talented award-winning director who has created, amongst other things, a short film about our other guest, Sarah An Myers. She's a writer, a mental health advocate, and creative living in New York City. She writes a column on psychology today about psychotic disorders, and she has currently finished a memoir on living with schizoaffective disorder. Each week, we'll bring you a recovery diaries contributor, folks who have shared their mental health journey with us through essay or video format. We want to see where they are in their mental health journey since initially being published on our website. Our goal is to continue supporting our diverse community by having conversations here on our podcast to follow up and see what has shifted, what has changed, and what new things have emerged. We're so happy to have you along for this journey. We want to remind you to follow our show for new and back episodes at recoverydiaries.org. There, like the podcast, you'll find stories of mental health, empowerment, and change. You can also sign up for our mailing list there so you never miss a new podcast episode, essay, or film. And you can find this podcast pretty much anywhere you get your podcasts. We appreciate your comments and feedback about our show. It helps us improve, make changes, and grow. And of course, make sure to like, share, and subscribe.

Sarah An Myers 2:12

Thanks for having us.

Gabe Nathan 2:31

And um it's it's an absolutely extraordinary film. And I I want to start with something, Sarah, that you say in the film and that I want you to talk a little bit about. If I don't communicate, I feel like I'm disappearing. If I stay silent, I feel like the world won't hear me. Can you please just uh expand on that a little bit and about uh what it feels like to to potentially disappear and that and your fight against that?

Sarah An Myers 3:05

Yeah, definitely. Um this kind of ties into the general theme of my work uh related to writing, my memoir, and everything I do basically, including down to my fashion sense. Uh I feel like um well, a lot of parts of me are hidden and neglected in general. So I'm half biracial woman, um have Vietnamese, but people can't see that. I have schizoaffective disorder, but people can't see that as well, just from looking at me. Um, I I hear voices, but people can't see that. So unless I don't bring it to the forefront and put it in people's faces, people will not see it. And uh because of that, I feel like my interactions in the world and pe with people have just kind of been not fully present on my end. So I haven't been who I am, and uh it feels a little surprising and out of context when I bring up the fact that I hallucinate or here's this video, there's all this stuff going on in my mind, and people are like, Oh, I have no idea that you went through that, you look completely normal. Um, and I'm like, well, but this is my entire reality. And if I don't say anything about it, yeah, then I'm disappearing because nobody would know otherwise. And that's one layer, but I think in a general sense, if we don't talk about mental health stigma and mental illness as a serious mental health condition that has negative consequences, I think we won't be able to recover and heal from them as a society either.

Why Stigma Persists

Gabe Nathan 4:54

And so it may seem like an obvious question, but why why don't we why don't we talk about because we're here on this podcast talking about it, right? And recovery diaries is every week we're publishing an essay, every month we're putting out a film. It it so it in one sense, it seems like the world is changing, right? That it's more open to conversations and stories and people who are living with mental health challenges, but uh the reality is quite different um day to day. So can you talk about that a little bit?

Sarah An Myers 5:26

Yeah, I do feel like there's a segregation between the effort to bring awareness to the real issue and then people who just outright deny it. Um, I think it I mean, it's mirroring the current political landscape we have too, the polarization. I think that people are bringing to the forefront the realities of certain people and their the marginalized groups and their suffering that we experience. But um, on the other hand, people are backlashing. So, in a way, people like this podcast, we can share the deepest aspects of ourselves all we want, but then at the end of the day, people have their psychological and cognitive uh denials or coping mechanisms that kind of shut out their ability to accept and integrate the information they're receiving. So, in a way, I kind of think that um completely embracing mental health recovery is also polarizing because it's completely within the I don't know what to say, but the um you you can't argue against it basically unless you deny it. So it naturally produces that reaction of, well, like this is so foreign that I'm just gonna discard it completely and I don't even have to put any effort into learning about it. Um or if people do watch the film or read about it, they're like, huh, okay, but it doesn't deeply penetrate because I think most things take a lot of time and maybe generations of people in order for society to change.

Gabe Nathan 7:06

Well, and takes a lot of time, and I mean exactly what you said, but also if it doesn't touch me personally, if it's not in my family, or if it's not my best friend, or if it's not me, I can't I don't care about this, and I can't care about this, and I can't conceive that this could possibly happen to me or someone I love. You know, a lot of the work that I do is in suicide awareness advocacy, and I I find the same thing with suicide. If it doesn't touch you or you believe somehow that you're inoculated against it, or you know, that it's just it's just not going to happen. So that cognitive dissonance piece I think is so, so real. Um, and I'm really glad that you pointed that out. And Glenn, I want to bring you in here and to kind of go back to where we started, which was Sarah's quote about if I don't communicate, I feel like I'm disappearing. If if I stay silent, I feel like the world won't hear me. And I think about the film that you and Sarah made together and the other films that you make for recovery diaries. I just feel like you are uh helping people uh not be silent, and you're helping people who need to be seen and who people need to see um exist in a way that they wouldn't without these films. And I don't know, I'd just love to hear from you about what that what the general experience is like and also this obviously the specific experience of working with Sarah.

Glenn Holsten 8:47

Well, working with Sarah was I think the ideal experience because Sarah is super creative. And Sarah and I met early on with no real agenda, just an interest in working together. Um, and then we just had a series of conversations that sort of revealed I would be listening carefully to what she wanted to show, to share, to say. And then for some reason my brain turns that into scenes in a film. And so then we're able to try out ideas on each other. It was very organic. I think it was really satisfying. And then Sarah's, I think, super brave too, because we came up with these things that neither of us had done before, like for going down the subway platform and having Sarah direct the camera to create her lived experience when she's in crisis and things like that. So and she was all for it. And then while we were doing it, I was thinking, I've never seen anything like this before. And that's a pretty exciting energy as a creator to be experiencing together while you're creating. Um, and then the other idea that the film presents, which I hope everyone can look at and listen to, is Sarah wrote a script for the voices that she hears. And we cast actors to read those lines out out loud. And for me, a really moving moment was when Sarah was directing the actors, and she herself heard these voices that had only been in her world, out in out in our world as well. And that was very sort of moment where documentary captured an experience. Um, so for me to be in partnership with somebody who has a sense of adventure, super creative, and and trust in the process and trust in me is uh is ideal.

Hearing The Voices Aloud

Gabe Nathan 10:34

And I want to talk about that the scene in the recording studio, Sarah, when you you had the the actors uh reading the lines that you had written um to kind of uh uh exemplify and and bring to life, bring to external life those voices that you experience in your head. What was that like for you? I mean, first the writing of it, and then actually hearing these things externally. And the reason I'm asking is because I feel like a lot of people create mythology around creative works either by individuals with mental health challenges or or with them, that oh, there's this assumption that it's like automatically therapeutic and cathartic and and positive. And I I I wonder if that's true for you, if that was true in this experience. Um was that your experience? Was it a little bit traumatic or weird or fucked up? Or I mean, I I want to hear from you.

Vulnerability, Shame, And Freedom

Sarah An Myers 11:36

Oh, for sure the latter. Um I okay, so actually after the video was published, I had to completely take a break and like uh distance myself from looking at it, from imagining all what are people thinking when they look at it, and um just the idea, the fact that I put myself, my real voices out there. Because um, I mean, I watched the beginning of the video and I'm like feeling so cringe. No fault to you, Glenn, but it's like hearing your own insecurities and um your most personal like insecurities in a voice format, it's the weirdest thing ever. People, you're hallucinating. Um, people make fun of people who hallucinate. So I just put that out there, is what I'm thinking. And I'm like, oh my God, people are watching this. And a lot of my creative process does actually begin that way, though, where I'm just in my head. And ideally, I think that if I were in a completely safe space in the world um where everybody was welcoming and warn me, what would I say? And this is what I would say. But the reality is the world is not like that. So when that video was published, I was thinking, like, oh, all these people who have had said negative things about me, what are they gonna think? Are they gonna use this to further uh make fun of me? And then um, it was really anxiety provoking. I was really nervous and distraught a little bit, not gonna lie. Um, and still watching it, actually, it's like, wow, like I really put that out there. I can't believe I did that. Um, because I think there's definitely a shame and stigma of admitting that you hear voices, period, and it makes you like a freak somehow. And there's many, many people on the internet that are for sure uh going to be like ready to make fun of the quote schizophrenic. So um, but I really had to, it was very, it's a growing moment because after I kind of overcame that that realization or that fear that people were gonna make fun of me or use it to even harass me further, I was just like, well, actually, I have a lot of great things about me in general. And um, like I opened myself up and it's out there now, so people can't use it against me. And that's really what I wanted to do is to free myself. And so it was really challenging and painful, but ultimately I'm freer.

Gabe Nathan 14:11

I'm not only freer, but what you have done through this film, through your writing, and not just on our site, your writing all the time. Um, you are normalizing something that is in people's minds aberrant, weird, strange, mysterious, scary, you know, whatever it is. There's a line in in, I think it's in the second Harry Potter film where Harry hears um, I don't even know if it's Voldemort's voice or something, but Hermione has this line. It's like, you know, Harry, even in the wizarding world, hearing voices is not a good thing. And it's like I heard them like, Jesus Christ. Like it's it just comes from everywhere. It comes from every possible angle. Um, this reinforcement of the idea that this is scary. And, you know, these are people that you should steer clear of and and you are normalizing that experience. Um and saying, hey, I'm a human being and I have a life and I have emotions and I have hobbies and I have interests, and I and this is a a piece of who I am. Uh, and I just think that's that's so, so important. Um, and without your writing and without the film, you know, there would be one fewer person out there saying, hey, this is my experience, and it's okay. But yeah, at the same, at the same time, there's a there's a cost to that. Um and you know, how do you how do you navigate that cost?

Sarah An Myers 15:54

Um, well, I also want to point out that actually there was a study or a survey or something. I don't know the exact statistic, but a lot more people hear voices of what people have thought. So um the the experience of hearing voices, whether it's one voice like one time or like multiple voices over a period of time, is actually much more common than people admit. And uh I'm sorry, what was your question, uh original?

Gabe Nathan 16:23

The qu the question, and that's I'm glad you brought that up though, because that's that's very valid. Um and I I I will say just for myself, there was a time in my life several years ago where I was not sleeping um and I was having auditory hallucinations. Um, so it can happen for a variety of reasons. And I think if people were honest, um the numbers would be way, way higher. Um so anyway, just to just to throw that out there. But the question was the navigating the cost of being open and out there. Um, and and whatever the cost is, you know, for you, sometimes it's worrying about what are people gonna say? Are people gonna use this as ammunition against you, are people gonna think you're a freak, or you're gonna lose friendships or or whatever it is, um, or even just the pressure and stress of putting something creative out there. Um how do you how do you navigate that personal cost against the benefit, which is, I think, more external? It's more something you're doing for others.

Normalizing Voice Hearing

Balancing Cost And Courage

Sarah An Myers 17:32

Yeah. Um, well, in a way, I'm almost pigeonholed by circumstance to kind of do this work because um I'm not able to work a full-time job. So I cannot work a nine to five just because um I'm not a consistent person. So my disorder kind of leaves me not sleeping many nights and then I like am having an episode many days, so I can't like come to work often. So the fact that I don't have these avenues of these options of functioning in society in a way that's traditional to most people kind of like I said, pigeonholes me. So my personality is more like, well, I have to do something if I'm not just gonna sit around and and and just do nothing with my life. I'm the type of person that has to be seen and um doing something important and doing something worthwhile. So uh really uh I have to suffer anxiety, is what it is. Um, and because this is, I guess, like you said, Glenn, it's kind of some of the first work or visuals or stuff that we're creating that is um really embracing this idea of a publicly uh psychotic person. Um and that is kind of a lonely journey. Um not many people are willing to do that. And then if I talk to other people with schizophrenia, we don't share the same views on engaging in the same process. So even though I share the disorder with many people, we have different attitudes about it, and then the way I present myself is also very different. And I, if I admit this, I I don't like I'm suddenly known as different than in other groups and circles of mine. So um, like, yeah, I uh I have to also suffer social stigma because if I go back into a workplace or go back into the mainstream world and I just say, here's this video, and then people are just like, whoa, and then they don't know what to say. And then the conversation when it was first going really well, they're like, Oh, so you're different. And they're not saying that out loud, but that's the thought that happens in their mind. So I have to, I mean, it's lonely, it's like anxious, anxiety provoking, and um yeah, but ultimately I know that it's worthwhile because I can create the change. And I think that's what I always wanted to inspire in other people is that people should be uh empowered to create that change, because if one person can start, then everybody can start, and then it'll actually be normalized. Because if everybody who's heard voices spoke up, and and really the thing is you just be unashamed, like it's a it's it's a simple step, it requires a lot of cognitive debasing and like readjustment and reframing. But really, if we all just spoke like, yeah, I heard voices last night because I couldn't sleep, like it could just be a passing thought, and eventually that's what I wanted to get it to because it's really just a symptom. Look at me, I'm not like I'm not a freak. There's no freaks, honestly, in my opinion, because we just haven't normalized the vast array of mental symptoms, and um, yeah, so that's I just have my goal and my vision in mind, and I'm focused on that. And I know it's relieving uh generally in the first place, so that's what I just focus on.

Gabe Nathan 21:12

Yeah, and I think in terms of normalizing, obviously we still have a long way to go, but that is how it starts. It starts with one person making a decision to say, fuck this. I'm just gonna talk. I'm just gonna be open and you know, just say, Yeah, I I I hear voices, and that's just that's part of who I am. And it's I think it's very similar to how we go about normalizing help seeking behaviors. Oh, uh yeah, I can't, I have to leave work early. Oh, you know, why? Uh I I have something to do. No, I have therapy. You know, what what the fuck are we so ashamed about? What are we hiding and why? Yeah, um go ahead.

Sarah An Myers 21:56

Yeah, and it's like, you know, like uh millennial. Women, Gen Z women, too, we're always talking about like, oh, like my therapist, this, and we're therapy culture on the internet. And I'm just like, well, if all of us are going to therapy, why can't we talk about the serious mental health symptoms that we're experiencing? It's just like butt jokes and and like like stuff that's not really actually related to the deep uh issue of mental illness. So we're not we're talking about it. So back to your original question at the beginning of this conversation, we're we're talking about it, but not in this substantial way to make like to mature ourselves and to address the real issues.

Gabe Nathan 22:38

Yeah, and like I like I keep saying, this is a long road ahead. Um, but you know, I'm just grateful to you for being part of that and for dipping your toe in the water and encouraging other people um to say, hey, it's not that deep, it's not that cold, you you can come in here and it's okay. Um, and of course, not everyone has to write an essay and publish it, not everyone has to make a film. There are also people who can read and who can watch and be comforted and feel seen um by that work, and that is, I think, just as important too. And um I want to uh move to Glenn for a second to to ask you before you met Sarah, did you have any uh like preconceived notions about schizoaffective disorder or like any kind of thoughts about what uh what it was gonna be like when you met Sarah? Or did she after meeting her, did it change your perspectives on anything? Uh what was that experience like for you?

Crafting Trust On Set

Glenn Holsten 23:50

What this film does is it is that it educates for people like me that don't have a lived experience. It was completely an educational experience. Um, even to the detail of when Sarah was working with this fantastic sound mixer and designer Pete Rydberg about how to layer the voices for the effect that she lived with. That was a revelatory moment for me as well. Because you, for someone who doesn't have the experience, you don't have any idea of what the intensity of that experience, that lived experience is. So um I try not to assume anything about anybody. That's what this work has taught me. You know, when you walk down the street, you're in you're in company with anybody who could be having any kind of lived experience at that moment. Um, so I try to go as as much an open mind, but I also have exciting ideas and to find a partner to sort of take those steps together is is what I get out of it. In addition to being a storyteller of content and and I I also love crafting of films. I love I love when Sarah showed up walking her dog in that beautiful pink coat. I loved the close-up work while she's fencing uh with the extreme close-up lens, and you can see her face through the grid of the mask that you wear when you're in the fencing. So there's uh the joys and craft of filmmaking with incredibly interesting storytelling. And I think film is a wonderful, the language of film is a really good translator for a lived experience.

Gabe Nathan 25:17

Um this may seem like a silly question, but why why was it important for you? Why were details like the pink coat and walking Sarah's dog and the fencing? Um why were those important? Because this is a short film, right? And you know, I think some filmmakers might say, well, shit, I have a lot to cover here. And you know, the focus of this film is is mental health and mental health recovery. But again, you you've been doing this for so long and have such a such a creative and expansive eye. Um, why was it important for you to get all of those other things in this film?

Film Details That Humanize

Glenn Holsten 26:03

I don't think I go out seeking the other things. I just show up with a a kind of a rough plan. We know we wanted to walk to the park, we know we wanted to sit and talk, we knew we wanted to check in with her dad. Um, but all those things sort of that's what the beauty of documentary filmmaking is a lot of those things reveal themselves to you when you're in the moment. Uh and then, of course, in editing, you sit and you say, Well, that close-up of that dog is adorable. Let's put that in. You know, the idea is to create these entry points into a story. So someone who feels connected to Sarah's lived experience will have that as an entry point. Someone who likes animals will have the dog as an entry point. Someone who has a relationship with their dad that they're fond of will will listen to that sweet phone call and say, well, all right, that's something I have in common with this person. Let me take the next step on this story with them. Um, so yeah, I mean, I early, early on, I tried doing fiction work. The real world was always so much more interesting to me. So that's what I try to embrace when I'm out working on a project is what the real world gives you while you're executing the plan that you've designed uh to be as prepared as possible. And that plan includes the right equipment and the right lighting and the right microphones and the right lenses and the right portable stuff. So you can walk down a street or park in a park and permits and stuff like that. So that's it's not an uncomplicated world, but it's certainly rewarding one.

Gabe Nathan 27:21

And I I think the other element that's so important in documentary storytelling, particularly about something that can be sensitive, like mental health, is comfort. And, you know, your comfort level, and of course, the the film subject's comfort level. And the whole crew. The whole crew. And everyone, everyone, everyone in this space. And I I remember when we were making our films um in Cape May about the the international writers who came from all different corners of the world, and and we were documenting their stories. Um I remember one of them was so, so anxious about being on film. And I assured her we were right outside the room that she was about to go in with you and the crew. And I said, You're gonna be taken care of in such a lovely and warm way um by the human beings in that room. You're you're not gonna have anything to worry about. It's just gonna melt away. Um, and when she was done, she told me that that was that experience. And I mean, this is this is a question for both of you. Like Sarah, I don't know if this was your first time on film in this way. Um I wondered if you had any kind of trepidations about being exposed on film like this um and being vulnerable like that. I think you're you're very used to doing it in writing, but this is a kind of different medium. And how did you navigate that? And um, you know, what was that like?

Safety And Care In Production

Sarah An Myers 29:00

Well, I've actually been on film before, but not a documentary about myself. So I in St. Louis I was very involved with uh the local music scene, and I was in some music videos, so I did a lot of video work in music, and I guess, and I was like a you know, like a character, I guess, that was like like me, but not like me. So I was representing like a theme or like like sensuality or womanhood or stuff like that, but um, this is the first time that maybe it was focused on my internal life, and um, I think that happens a lot with people who are posted as like a cover girl or like not that I I have now no scale to that, but that's what I'm saying. Like I first started out as somebody who didn't have a story, and then I was doing work and art stuff that wasn't my own. I was I was performing for other people and and um doing photography, modeling, doing other stuff. Um, not that I'm professional about any of this, but um I uh yeah, so this was the first thing about me, and this goes along with my writing because I wanted to share my story, and I think that a lot of people who work in the arts want to do that where they're um, if they're interpretive artists, they want to come out with their story. And um yeah, it was it was a little nerve-wracking, but to me, like I've been through so much stuff that uh has required a lot of plowing through the nerves that I was kind of used to it. Um I put myself out there through writing, yes, um, but in a way that is people read that silently to themselves, but in a film, like there's proof that I went through it. So like when I'm when I'm watching the film, that's when I get the most uncomfortable because I'm like, oh, I put this out there and there's evidence to show it. I can hear it and I can see it. Um but with writing, if I just I can just look at the page and I can be like, oh, well, there's still this safe space in my mind that I've carved out that allowed me to to write this. But um, yeah, similar, but it wasn't it wasn't incredibly difficult. But I think for a lot of people it could be.

Glenn Holsten 31:18

We check in during the process, we check in with each other a lot about how we were feeling and if we needed space and if we needed to to slow it down. I mean, there is a lot going on because there's a crew and there's Sarah's thinking about what she wants to say and how she wants to present, but there's also these technology around her. So there's a lot. It could be, I always feel like it's a little bit like being in a spaceship for a bit of a time. So um have to take it, you have to make us a day that has uh just a functional pace to it. So that we all don't feel overwhelmed.

Sarah An Myers 31:52

And I think too, it matters who you're working with, most importantly. I think that the the the crew and everybody was so helpful and made it very comfortable. I did not feel unsafe whatsoever. And I think that's the key to making any kind of creative work is that you have to feel safe to let out your true soul and your heart.

Reading: Autonomy And Treatment

Gabe Nathan 32:11

Yeah. Yep. And that's, you know, that's how I know that we're we're working with the right people, with the right motivation, the right intention. Um, because it's it's so much about caretaking. Um, and I feel that when we're editing essays too, we're we're not here like being pet ants looking at semicolons and obsessing about m-dashes. Um, like there's that stuff too. But we're we're caretakers of authors and stories, and that's very, very important to us. Um I I I don't want to take that for granted for a moment that there's precious cargo here. You know, we're not transporting boxes filled with widgets. These are these are human beings, um with something very vulnerable to give, and it's very like, you know, they're handing it to us. Um, and we want to take that uh seriously. Um so I'm glad that you that you had that experience. Um you know, you mentioned uh the writing and that like okay, if someone takes this, you know, they're reading it silently and they they have it on their own time. And um and your your writing is so uh powerful and and thoughtful and introspective. Um and you were lucky enough to have two pieces of yours on our site. Um and one of the things we like to do here uh on Recovery Diaries in Depth is have authors read their pieces aloud. Um I read everything aloud uh once it's published on the site for accessibility reasons, um, you know, just so people can have something if they consume media uh, you know, auditorially, if that's the way they like to get it. We want to give them that option. But I think it's always best to have people read in their own voices. Um and you have this lovely piece, How Modern Schizophrenia Treatment Steals Our Autonomy. And I would love to hear you read it if you would.

Agency Versus Infantilization

Sarah An Myers 34:19

Yeah, I can definitely do that. In the final semester of college, while I was off of my medications, I would introduce myself with a fun fact. I've hallucinated since I was five years old, I claimed. This is partially true, for I had visual and auditory experiences so intense that they gave me nightmares as a child and later transformed into fancy colors and cats. At the age of 15, I read books that call these hallucinations. I began speaking in word salads, claiming that I was the second coming of Christ to anyone who would listen and spent hours engorging books about past lives, prolonging any break I have from reality. For many people with schizophrenia, drugs are our only line of treatment. It is the first suggestions we are met with upon entrance to the mental health industry. However, side effects, an excessively limited healthcare team, and poor attitudes from the psychiatric industry take a toll on the lives of people with schizophrenia, much to the cost of restoring our sense of agency. During my fourth stay at an inpatient psychiatric hospital, I was newly diagnosed with schizoaffective disorder. People began treating me differently than the past three times when my diagnosis was just depression. Nursing staff told me in the third, spoke to me in the third person. Cameras were always monitoring me, and I was told to stay in front of them. And when I was hospitalized in the emergency room for allergic reactions, a similar story unfolded. The visit started with delighted, easy-going EMTs wheeling me in a gurney from a restaurant to the ambulance, where they loaded me up with saline water. The trip ended with me hallucinating, growing angrier at the staff with a loud voice demanding to know what it is that they'd just done to incur these hallucinations. Give me a warm blanket, I would demand. Why don't you people fucking know how to calm people down? Who is to blame? Are hospital staff prepared for psychotic symptoms upon the insertion of their needles and quick demands? Nurse threatened to admit me into the psychiatric unit if I could not calm down and explain myself. By the time we meet a medical professional, we may have progressed so deep into the illness that hope may be almost lost, and the attempt to correct assumptions is futile. Treatment plans are created to manage exacerbated symptoms. The ER staff viewed me as an incapable psychotic, and it wasn't until five hours later that my father finally got me discharged. During a psychiatric inpatient stay, I would ask for hobby items to pass the time, like access to philosophy articles or books to read. Each time I was met with screening and hesitation. And my emergency medicine physician cousin has told me plenty of stories how hot people in the throes of psychosis would violently be strapped down in hospital beds while raging and screaming. While physical restraint may be typical for people with schizophrenia, living to write and fuck about it is not. The illness sometimes limits patients to making ends meet rather than trying to thrive. The erosion of the self continues the further one falls into the medical world for treatment. For the large number of afflicted individuals with a psychotic disorder, one can count the number of writings reflecting on living with it on one hand. Developments for schizophrenia therapies through psychotherapeutic or biological merits that restore the schizophrenic's autonomy and reflective insights have been few. As of now, there exists more than 20 different antipsychotics on the market that essentially fulfill only one purpose to sedate psychotic symptoms at the hands of gatekeeping authority. All of them include these severe, life-threatening, and even socially detrimental side effects. And when we're inpatient, all staff can do for a psychotic is state sedate us with medications until we calm down for observation. But I wondered, why is there a stagnation for treatment of schizophrenia? Why must I be treated so dimly as if my individuality behind my illness does not exist? Although I'm not taught how to manage my symptoms aside from medications, I am so aware of my disorder that I can employ cognitive behavioral therapy, skepticism, and logical deduction to back myself out of delusional thought. There is a culture in the medical field that besieges doctors and patients alike, which assumes people with schizophrenia are incapable of gaining insight into their disorder. This is referred to as anosungnosia, which does plague much of the population afflicted with schizophrenia. Anosygnosia is seen as a fixed trait. It is not seen as a trait that can disappear or get better with gradual conversation. When I first entered psychiatric treatment, physicians would dance around the topic of my condition so much that I was unaware that I was experiencing psychosis. As a result, I was put on an antipsychotic without being told why. In the process of attaching anosynagnosia to patients, opportunities to grow awareness in a person are missed completely given the prospective case of hopelessness that is attached to those with us with the diagnosis. One of the key moments of my recovery was having a direct conversation with one of my psychiatrists about how exactly psychosis was affecting me and the fact that I was indeed psychotic. While some cases are more abysmal than others, other cases disregard the simple possibility that self-aware people with schizoaffective disorder or schizophrenia exist. Those of us privy to self-awareness have a perspective that is unique to voice hearers alike. We can speak to our experiences and serve as a bridge to neurotypical professionals and afflicted people that would otherwise be lost without proper cultivation as a trade-off between pure drug treatments and cognitive behavioral methods. Individuals with schizophrenia need structural care in the form of housing, financial support, regular meetings with physicians, nurses, caseworkers, counselors, and more. I have brought my issues with my medications up with my psychiatrist, fully lucid and aware. I was on a full second to highest dose of the drug when upon hearing of my side effects, he told me to cut out almost half of my dosage, cold turkey, and start a new regimen. This psychiatrist, while hard of hearing, hard of understanding, and hard of retention in my monthly answers to his repetitive questions was also impossible to reach. I was unable to contact my psychiatrist directly. Instead, I had to wait for 10 to 30 minutes while I went through the menu keypad, minutes of being on hold before I could even speak to a receptionist. These barriers do not promote a culture of confidence or independence in mentally ill patients. What helped me gain independence was a hybrid model of intensive and outpatient care, which was the assertive community treatment plan. I was equipped with a mental health care staff of six people that I saw weekly, which included a psychiatrist, a counselor, a social worker, a nurse, a case manager, and a vocational specialist. The staff was enthusiastic, and by working together, they were able to accommodate the intense needs of each individual patient. And ultimately, a psychiatrist who told me head on that I was acting psychotic proved to be the breakthrough that I needed to take ownership of my recovery so that I could rehabilitate to a more functioning person. After a tick I developed from my antipsychotic, I considered another medication change. But this time I wanted day-to-day monitoring. My only option was to admit myself into a psychiatric hospital. And for me, that is a dismal option. I've been told that the criteria for admittance to psych hospitals is the presence of suicidal or homicidal desires. Considering my caliber of functioning, I met this option with snooty distaste. I'm currently in a graduate program. While others may need restrictions in their environment due to the suicidal tendencies that occur with self-harm, the typical psychiatric unit is somewhat of an insult to those of us who are hospitalized and not immediately suicidal. Intensive psychiatric care needs to cater to a middle ground of people needing intensive psychotherapeutic care without knobless sinks and dorless bathrooms, smocks as my uniform and coloring books as my entertainment. However, I have difficulty with this concept of schizophrenia hierarchy. The medical intervention of babying schizophrenics is a controversy that begs exploring. How much help is truly needed for each case? And is it fair to say that some of us require different needs than others? If patients were treated with more autonomy and respect, maybe it could help even the hierarchy, since many people with schizophrenia believe they have remarkably low self-esteem and do not think they were deserving of this autonomy. While some may need close monitoring, some others may need it without overbearing control. It hurts both the people who do not need close monitoring as well as those who do by creating a type of monitoring that speaks about control rather than cooperation with patients. Instead of allowing for the patient to gain a sense of agency that works with one's disorder, the responsibility is thrust onto the physician to simply make the symptoms go away. In this process, we risk traumatizing patients and reducing their connection to their sense of individual self and autonomy by treating them as a standard threat, by strapping them down violently, sedating them, creating side effects that are sometimes incurable, and ridding of the remaining bit of innocence that our insanity has spared. As a result, there exists exactly. One graduate school textbook on cognitive behavioral therapy for psychosis versus the 20 to 30 different drugs and antipsychotics that medical staff thrust upon patients. The spectrum is wide, but is similar to existing disorders for which we have less stigma. Some children with autism may need physical limitations so that they do not smear feces on the wall, while some can successfully get by with A's in school simply be with the inability to make eye contact with their friends. But the approach to subtracting a person's agency is unproductive at best. While I was once far gone in one of my more debilitating cases, complete with monologues about communicating with aliens and CIA torture memories, starving myself out of the fear of food and being unable to distinguish fact from fiction, my request for a close monitoring came at the result of my own development meditative deduction and logic. Unfortunately, the past 10 years have left me with the impression that the mental health industry doesn't believe people like me exist. People who, aside from a medication they take, can pass off in the public as a completely neurotypical individual once confronted with the realities of their illness through the use of self-regulated coping skills. A term common in the treatment of most mental health illnesses except schizophrenia. Some people have some element of moderation of their psychotic symptoms in the way anxiety can be moderated by self-talk. We have a sense of agency over the symptoms through our own self-talk and regulation strategies, which ultimately earns us the title as high functioning mentally ill people. While the distinction of this class of disordered patients is somewhat met with criticism, the distinction is important to make, and similarly to NOCnosia, high functioning should not be seen as a fixed trait. The truth is that you can have psychosis and not be crazy. The truth is you can still experience hallucinations and still be able to hold a logical conversation. The truth is that there is a very insurmountable industry gap with which refuses to address high-functioning schizophrenics by developing alternative psychotherapeutic treatments. Both awareness and levels of functioning are fluid and change over time, but hopefully grow with commitment to their nurturing. At least that's my hope. And what the experimentation of my own life has to offer.

Gabe Nathan 46:28

Thank you for reading that and for revisiting that and for sharing that um on the show. I just want to ask you I have a lot of things going on in my head after listening to that, but what was it like for you to revisit that?

Sarah An Myers 46:46

Wow. Um my first thought is my critique of my writing. Um I uh yeah, I did an MFA in creative writing, and I'm just like, wow, uh, this is very wordy and very academic. Um uh, but I uh I touched on a lot of points, and I was also I have a lot of questions about myself. Like, wow, there was a lot going on in my brain at the time. Um but uh I think the theme of autonomy is so important, and this is apparent in every single industry, like philosophy of psychology, psychology itself, neuroscience, psychiatry, patient care. Autonomy and agency of a person is so commonly like a crucial factor to determining whether or not somebody is ill or mentor like stable. And if you have agency and control over your care, then you are more likely to uh have you know have feel a sense of control. So I think that there is a lot here. Um, but yeah, I I guess I'll let you ask questions.

Avoiding Rehospitalization

Gabe Nathan 48:03

I well, so one of the things that really hit me about this, and and like if we're talking about inpatient psych hospitalization, which you talk about in here, which I experienced on the other side of the glass as staff, there is no autonomy and there is no agency, and there is infantilization and there is homogenization. Everybody is treated the same. Uh, everybody has the same shitty room and the same shitty bathroom and the same shitty care and I mean and care in quotes. Um, and that that hierarchy that you're talking about or differentiation, it's it's just not there. Um and you know, I went to a master's of education program, and and one of the things I learned about teaching is this idea of differentiating instruction, that different people learn in different ways, and that you can't just give a 64 question test to everyone. And you know, that a better teacher who's more aware might say, okay, for those who are really great test takers, here's your test with bubble sheets. For those uh who have better writing skills, why don't you write me an essay? Um, because you're gonna be the the point is to let me know that you know the material. So let me know in a way that works best for you. But in inpatient psych, there's nothing like that. Um there is no um, okay, what does this person need versus what does this person need? It's all cookie cutter and it's all like a conveyor belt um methodology. And one of the things I I that I remember so clearly is when someone was admitted, if they were psychotic or or had um a diagnosis like schizophrenia, you know, there was this skeletal team that was assigned to everyone psychiatrist, caseworker, nurse. Um but there were also psychologists on staff. But people with a thought disorder would not be assigned a psychologist because why would they? That's a waste of resources, that's a waste of the psychologist's time. They're they're delusional, they're hearing voices, they can't benefit from a psychologist. And it was it's heartbreaking to think about now. Um because why were these individuals treated differently? Why were they automatically written off as not being able to benefit from someone who could do CBT with them, um, who could just sit in a room and and talk and try to communicate. And that's part of that infantalization. They're not they're not going to benefit from that. Why try to teach algebra to a raccoon? Um, and it's it's just your essay uh evoked a real feeling of shame in me um uh remembering being a part of that uh system, um which I can't imagine is very different than when I left. Um and uh I'm curious, I mean, I said a lot, but I I'm also curious to know if you're still with the ACT team. Um, because I think anything that could be done, it to keep people out of facilities like that and to keep people living independently and have that support in the community is so, so important. Um so I would love to hear about that and also just about how you keep yourself healthy enough to not have to go back into a place like that.

Sarah An Myers 51:48

Yeah, I will say that that is all I spend my time doing, which is to make sure I don't go back into the mental hospital, because I think I wrote that essay right after the last time I got out of the psychiatric inpatient hospital, and that last time scarred me so much. I think that I felt like it it reversed like several years of my recovery that um I had done a lot of work on. Um I am not with the ACT team. Um, that was in St. Louis, that was only done for a few months or so. Um, but that's what I needed at the time. I think I I used that because I wanted to say I I wanted that as a replacement for inpatient instead of um staying in a hospital because I wasn't yes, I was suicidal, but I think there's also a grade and degree andor spectrum of suicidality too.

Gabe Nathan 52:48

Of course.

Daily Pressure And Survival

Sarah An Myers 52:49

Um, so I'm I have a lot of dark humor. I talk about suicide a lot. Um but uh basically at different points in my recovery, I've needed different things, and none of them have defined who I am as a person. Um, just because I needed an act team, like doesn't mean that I was so severe, but just because I was an inpatient, like I don't know. I think that I fell into these uh treatment plans by accident, or I've had to recreate some things with my dad and my support team. A lot of it has been like experimenting and creating, but it's been 150% like my runoff of my survival instinct. Um, because I've had to rush for like 10 years to figure out like what is the next appropriate thing for me, like how do I prevent myself from heading into a psychotic episode so that I don't like incur like these next 10 chain of events. Because once you're uh I have such a fear. If once you're psychotic, like floridly psychotic in public, and you hand that trust over to somebody, they will make decisions for you on your behalf that you have no control over. And before you know it, you are traumatized. So I was never a patient that was strapped down physically in a hospital, but that has happened most all of the times that I've been in the hospital. Um a psychotic patient is coming in and they're kind of flailing around, acting screamy things, and then they're injected with some kind of uh like sedation drug. And so all of this around me, I grew up growing up too. Um I knew this was in I would say culture of my illness, um, that this is just the way that people treat people with psychosis, and I basically just live in fear in this little cage that um, you know, I'm I'm really careful not to step out of this cookie cutter uh thing that has been defined for me, um, which I guess ties into the whole work in general, because I'm keeping so much inside. The uh video is a little snippet in release, it's very therapeutic, but like it because all of this is so segregated, um there's no other place for you to share that you have voices except for like an inpatient or mental like hospital setting or a mental health podcast. Like it's not in the general speech. And uh, you know, like day to day, uh I mean, I'm literally just cooking dinner, cooking breakfast, walking a dog, getting dressed, brushing my teeth, and that's like I have to do this, or else I will relapse and go back into the mental hospital. Um and I don't think people realize that. I don't talk about that often because it's just so it's uh it's uh definitely a trauma response. Um it's a survival instinct for sure. But I guess after you hearing you say that I realize how much stress I I am under every single day to make sure that I don't fall into the hands of the mental health industry.

Gabe Nathan 56:12

That's a lot of weight to be carrying around all the time. All the time I understand it.

Sarah An Myers 56:18

And and you know, like I was just telling my friend, so I I was talking with my longtime friend, I hadn't talked to her for years on the phone, and we were talking, we ended up talking for five hours, and then for the second like two hours, for the last two hours, I was just rambling and I was like, wow, I didn't realize I was holding all of this in. And I was telling her, it's like, you know, like I just get up at like 11 a.m. every day and just like try to stare at the wall, and I can't like do much, and I don't know. And I know I said I was doing good at the beginning of the conversation, but that's what it's just what I tell people, and that's only I just mean that in really in comparison to what I was in the past. So yeah, um I'm lucky enough to have time and support to allow me to explore this process, but it's it's incredibly difficult and um yeah, very stressful.

Gabe Nathan 57:12

Yeah. Uh I I mean, it's almost like driving a car and all you can do is obsess about all the things you have to do to not bump up against another car. Like if that's that's all you're thinking about all the time, every second. Not where do I have to go or how fast am I going or how long is it going to take me to get there, but literally just what do I have to do to not have this outcome? That's that's a lot. I'm I'm sorry that that's what you have to carry around with you. Um, but I really appreciate you sharing that because I like you said, I don't think people know or understand that. I don't think people can have a conception of what that's like without hearing it. Um which is why the writing is so important and why the film is important. Um I we we have to come to a close. Um, but I want to uh ask Glenn, like I don't know, it's it's been a while since you and Sarah were together in a creative space, and I just want to hear your your reaction to her essay or anything that she said and anything you want to say to her before we part ways.

Glenn Holsten 58:30

Oh gosh, yeah, Sarah, I hope you know how much I loved working with you. It was a it was uh we had you know the shoot itself was you know, when you're not filming, you're chatting, you were getting uh lunch at this great restaurant down the street from our apartment. We're spending time chase uh dodging uh airplanes in the park together because the sound, we're trying to find a place where we can have a quiet peace. But all of it was really enjoyable. Um, and I appreciated your trust. That's the overall thing. And I love I think I loved well, I think your dad loved it, right?

Sarah An Myers 59:05

Yes. Everybody loved it. They were like, wow.

Glenn Holsten 59:11

Yeah, that part makes me super happy because your dad is such a strong, uh strong human being. That as I've just observed from you, your storytelling about him. And I just wanted to make something that he felt good about. I also shared, gave, you know, we my task is to share the rough cuts with the people we work with. And so people get I get feedback. Nobody sees anything, we don't launch anything without people having 100% um support of it. So I also love that moment after Sarah saw the rough cut. Some strong constructive criticism, and we made tweaks and fixes to make it make it work. But I I also loved getting her blessing before we shared it with the world. That that part is is really important to me. So thank you, Sarah.

Sarah An Myers 59:55

Yeah, I love working with you, Glenn. The whole crew is really amazing and great, and and you made me feel really comfortable. I love the video, I love the editing and the touches, the whole technology, the voice acting, everything. That was really cool. And thank you, Gabe, for bringing us together.

Gabe Nathan 1:00:12

Yeah. It's it's my pleasure, and that's that's no, that's why I love doing what I do, because it kind of makes a little sparkly magic that we really, really, really need. Um, so my thanks to both of you and Sarah, I just want you to know that I I appreciate you so much in what you do to step forward. Um, and I think it really, really does move the needle. Um, so thank you. Thanks for spending some time with us today.

Sarah An Myers 1:00:45

Thank you.

Closing And Community Resources

Gabe Nathan 1:00:46

Yep, thank you. Thank you again for joining us in conversation today. It's beautiful to see the progression of our contributors. I'm so very grateful to both of our guests today. My colleague, Glenn Holston, award-winning director and creator of short subject documentary films for recovery diaries, and Sarah An Myers, a writer, mental health advocate, and creative living in New York City. She's a writer with Psychology Today, writing articles about psychotic disorders, and she just finished a memoir on her life with schizoaffective disorder. You can find her on social media at Sarah A N M Y. Before we leave you, we want to remind you to check out our website, recoverydiaries.org. There, like this podcast, you'll find additional stories, videos, and content about mental health, empowerment, and change. We look forward to continuing to grow our community. Thank you so much for being a part of it. We wouldn't be here without you. Be sure to join our mailing list so you never miss a podcast episode, essay, or film. I'm Gabe Nathan. Until next time, take good care.