Latest / Brain Stories / Episode 19 - Brain Stories Connections: Soteria - A Better Alternative to Psych Wards?

Transcript

Episode 19 - Brain Stories Connections: Soteria - A Better Alternative to Psych Wards? · Brain Stories

• 0:00
  SPEAKER_00: So, someone is having what so many call a psychotic break.
• 0:04
  SPEAKER_00: Imagine a world where we don't respond with that really fearful look in our eyes.
• 0:09
  SPEAKER_00: Instead, we're curious.
• 0:10
  SPEAKER_00: And we ask questions like, what's going on for you right now?
• 0:14
  SPEAKER_00: Now imagine that question being asked by someone who has personal experience in psychosis who brings that experience up in a way that offers connection.
• 0:24
  SPEAKER_00: The good news is that we don't actually have to imagine that world.
• 0:27
  SPEAKER_00: It already exists at a place called Soteria House.
• 0:32
  SPEAKER_00: Soteria was invented in the US in 1971.
• 0:35
  SPEAKER_00: The first program closed a dozen years later when it ran out of funding.
• 0:39
  SPEAKER_00: So a little like another American invention, jazz, if you want to find Soteria now, it's much easier in Europe.
• 0:47
  SPEAKER_00: In fact, when I was in Vermont and I heard there was a Soteria House there, I went, wait, what?
• 0:52
  SPEAKER_00: I thought they went extinct.
• 0:54
  SPEAKER_00: Well, there is one.
• 0:56
  SPEAKER_00: It presents a radically different way of approaching psychosis, starting by not using the word psychosis.
• 1:03
  SPEAKER_00: To hear what it is and how it's so different, we're talking today with Betsy Hoekstra.
• 1:08
  SPEAKER_00: She worked at Soteria House in Vermont.
• 1:11
  SPEAKER_00: She also has her own experience with an extreme state, which is the term you'd hear at Soteria House instead of psychosis.
• 1:18
  SPEAKER_00: Welcome to Brain Stories Connections, a show about how we can all do so much better around mental health and, well, extreme states.
• 1:27
  SPEAKER_00: Here's Betsy.
• 1:28
  SPEAKER_00: Hi, Betsy.
• 1:29
  SPEAKER_00: Welcome to Brain Stories Connections.
• 1:31
  SPEAKER_01: Hi, Frank.
• 1:32
  SPEAKER_01: I'm happy to be here.
• 1:33
  SPEAKER_01: This is so exciting and fun.
• 1:35
  SPEAKER_00: We're happy to have you.
• 1:37
  SPEAKER_00: I want to start with Soteria House.
• 1:40
  SPEAKER_00: It's run by Pathways Vermont, an organization you work for.
• 1:44
  SPEAKER_00: And as of this moment, it's the only one in the country.
• 1:47
  SPEAKER_00: There's another one coming online in New Mexico, but right now I think it's the only one in the country.
• 1:51
  SPEAKER_00: What is Soteria House?
• 1:54
  SPEAKER_01: So Soteria House is a five-bed relationship-based, peer support-based residential program for people experiencing an extreme state, sometimes known as psychosis.
• 2:08
  SPEAKER_01: We say extreme states, and that the interesting part is that sometimes in extreme state, a person might actually not be distressed, but nonetheless, there might be something distressing about what's going on, perhaps for their social network or their family.
• 2:23
  SPEAKER_01: People maybe seeing things, hearing things that other people are not.
• 2:28
  SPEAKER_01: Sometimes there's alterations in like experience of truth.
• 2:32
  SPEAKER_01: Like all of everything that I'm thinking feels like extremely, extremely true, or everything out in the world seems extremely, extremely fake.
• 2:42
  SPEAKER_01: So when someone comes to Soteria, it's at a point where the experience that they're having has gotten big enough that it's become challenging to navigate.
• 2:52
  SPEAKER_00: And how long when somebody does decide to go there, uh, first of all, is it their decision to go there?
• 2:57
  SPEAKER_01: Yes, it is strictly voluntary, our Soteria program.
• 3:00
  SPEAKER_01: So we always want it to be a decision that the person themselves is making.
• 3:09
  SPEAKER_01: Soteria is primarily non-medical, so it's a relational community support environment.
• 3:14
  SPEAKER_01: Um we do have medical, like psychiatric and nursing resources available for people, but those are to be chosen at will as they want to use them rather than built into a structure of services, such as at the hospital.
• 3:29
  SPEAKER_01: You know, maybe you're meeting um daily, every other day, or weekly, you know, with a psychiatrist, a social worker.
• 3:35
  SPEAKER_01: Um, at Zoteria, it's more of like part of a menu of options that you might not maybe you want to see a psychiatrist once a month, um, or not at all.
• 3:44
  SPEAKER_01: Those would be options to people.
• 3:45
  SPEAKER_01: But we don't have any like structured um therapy type groups at Soteria.
• 3:51
  SPEAKER_01: Although we do have some community peer-based groups in the larger profile of pathway services, um, which Soteria residents are invited to join if they want, including like conversations about suicide groups and hearing voices groups.
• 4:06
  SPEAKER_00: And so those are things that are options for them, but they don't have to go.
• 4:10
  SPEAKER_01: Yeah, exactly.
• 4:11
  SPEAKER_01: Yeah.
• 4:11
  SPEAKER_01: When someone comes to Soteria, our first project is just to be together.
• 4:15
  SPEAKER_01: It's and it's not a project.
• 4:17
  SPEAKER_01: It's just like we we're just getting to know each other, you know, and giving a lot of space to that.
• 4:22
  SPEAKER_01: Um and creating like a space of trust where people can have the room, room to like reflect about what it is that actually they want and like what it is that's happening, like what is the sense that they're making of their experience.
• 4:35
  SPEAKER_01: Our staff are all trained in intentional peer support, which is a way of relationship building that a core feature is being willing to share about our own life experiences mindfully and in ways that can contribute to building connection.
• 4:51
  SPEAKER_01: So that means, you know, right with consent, like, oh, you know, this reminds me of something from my life.
• 4:58
  SPEAKER_01: Would you like, would you like to hear about it?
• 5:00
  SPEAKER_01: And then being willing to share about our own experiences.
• 5:03
  SPEAKER_01: And for some people, that means, you know, they have had experience in the mental health system, maybe with psychosis specifically.
• 5:11
  SPEAKER_01: Um, we've even had people who were residents of Soteria come and work as staff members.
• 5:16
  SPEAKER_01: So, you know, that when you talk about like a peer, you know, how how relatable is the experience?
• 5:22
  SPEAKER_01: I mean, we have people who are like, I've literally been in this very same program.
• 5:26
  SPEAKER_01: That is a general core value of peer support, right?
• 5:30
  SPEAKER_01: Is that like we help each other by being willing to share who we are.
• 5:34
  SPEAKER_01: And that is also a huge difference from the traditional um way that a medical system is set up, right?
• 5:40
  SPEAKER_01: Which is, you know, hierarchical.
• 5:42
  SPEAKER_01: There's a sense of power over or even just expertise, right?
• 5:46
  SPEAKER_01: Peer support is really meant to be leveling with each other.
• 5:49
  SPEAKER_01: Um, I'm the expert on my experience, you're the expert on your experience, and we come together to learn um in a space of uncertainty and not knowing.
• 5:58
  SPEAKER_01: And also we really emphasize like relational mutuality, which means, you know, perhaps you see your experience as a spiritual awakening, um, and your mom sees it as a an illness crisis.
• 6:14
  SPEAKER_01: Um maybe we don't have to figure out which one of those is the truth, but we might be able to focus on, okay, so for you, this is a spiritual awakening.
• 6:24
  SPEAKER_01: And when you are shouting in your house, that your mom, your mom feels afraid, right?
• 6:30
  SPEAKER_01: Like, can we kind of come into those, into that like that place where the contact of the relationship is happening and see how we can like make more space?
• 6:40
  SPEAKER_00: Yeah.
• 6:41
  SPEAKER_00: So you're not telling somebody that spiritual awakening that you're experiencing is actually an illness and you're wrong about that, and your mom is right.
• 6:49
  SPEAKER_01: We don't need to start by negotiating about reality.
• 6:54
  SPEAKER_01: The question of what is really going on, it's actually very secondary at Soteria.
• 6:59
  SPEAKER_01: Um, it's like, how can we connect and be here in this moment?
• 7:02
  SPEAKER_01: You know, and we understand like for family members, it's very different, the experience of seeing your loved one like acting profoundly different, right?
• 7:10
  SPEAKER_01: You there's a stake in having agreement about what is really going on.
• 7:14
  SPEAKER_01: But at Soteria, we come in with a like a common agreement that we're sort of the stake of that is just much, much, much, much lower.
• 7:22
  SPEAKER_01: Um, and it's not, it's not our priority.
• 7:24
  SPEAKER_01: And we can build bridges of connection to common agreements about reality, like in indirect, in indirect ways without making that the focus, which really just brings like a lot more fun um and freedom into the room.
• 7:39
  SPEAKER_00: Fun and freedom.
• 7:40
  SPEAKER_00: Wow, that sounds radically different right there.
• 7:42
  SPEAKER_01: Yeah.
• 7:42
  SPEAKER_00: What?
• 7:43
  SPEAKER_00: So how long?
• 7:44
  SPEAKER_00: So relational stuff takes time.
• 7:46
  SPEAKER_00: It takes time to build relationships.
• 7:47
  SPEAKER_00: How long is someone typically in Soteria once they once they get started?
• 7:52
  SPEAKER_01: Yeah.
• 7:53
  SPEAKER_01: So our stated um average length of stay is three to six months.
• 7:57
  SPEAKER_00: What is a typical overall stay like and how does it end?
• 8:00
  SPEAKER_01: So the first, you know, phase or chapter of someone's stay is just taking the time to settle in, to get comfortable, um, kind of learning for oneself, like what is possible in the space of soteria and building those relationships, connecting with staff members in an undirected way and starting to build trust together on both sides, right?
• 8:23
  SPEAKER_01: Like creating those experiences um together, I would say.
• 8:26
  SPEAKER_01: The second phase is where someone is like, they're like leaning in more, you know, maybe they're having more of those deep conversations.
• 8:34
  SPEAKER_01: For some people, it happens right from the start.
• 8:36
  SPEAKER_01: But um, you know, once that trust is built, right?
• 8:38
  SPEAKER_01: Maybe they really get into making a lot of art about their experience.
• 8:43
  SPEAKER_01: Um, also, this is a time where maybe we're having like family, we call them network meetings, you know, maybe someone's someone wants their family to be, to be more involved and in touch and on a weekly basis, you know, they come and we all kind of talk together about like what's going on and what the person is wanting.
• 9:00
  SPEAKER_01: And then as we're getting towards the end of the stay, you know, like month four, um, four and a half, five months, we're starting to think about like what's coming next in that person's life and where are you going to live after this?
• 9:13
  SPEAKER_01: You know, what kind of like a job do you want to do?
• 9:16
  SPEAKER_01: Are you trying to go back to school or something?
• 9:19
  SPEAKER_01: These are things that we talk about throughout the whole stay, if the person brings it up, but we'll give a little bit more of a nudge about those things as it gets towards the end, um, just to make sure that they're like set up to be able to transition into back into their life.
• 9:34
  SPEAKER_01: And then we have a transition program um where we try to have it be gentle because this is a community, you know, these are like our relationships and our everyday.
• 9:42
  SPEAKER_01: So it's a big deal to move out of the house.
• 9:46
  SPEAKER_01: So we have community dinners um two days a week where any past resident can come to those.
• 9:53
  SPEAKER_01: Um, and someone in the transition program could arrange to come to like a community dinner.
• 9:57
  SPEAKER_00: And who decides um when it's time to leave?
• 10:01
  SPEAKER_01: The ideal form is maybe a person, they have their own sense, like, oh, it's time to leave.
• 10:05
  SPEAKER_01: And we kind of feel the same.
• 10:07
  SPEAKER_01: Like, oh, it feels like, you know, something has shifted.
• 10:10
  SPEAKER_01: It's not defined in terms of like symptoms.
• 10:13
  SPEAKER_01: It's not like, oh, you know, when you started you were hearing voices and now you're not, so now it's time to leave.
• 10:18
  SPEAKER_01: For someone who really is feeling like ready to go, usually there has been some kind of more significant shift that's happening for them.
• 10:27
  SPEAKER_00: Yeah, that's interesting.
• 10:28
  SPEAKER_00: So that it's collaborative.
• 10:29
  SPEAKER_00: I mean, that's uh that alone is just so different.
• 10:32
  SPEAKER_00: I want to just briefly talk about how somebody gets in.
• 10:36
  SPEAKER_00: I mean, I think there's it starts with an application process, is that right?
• 10:40
  SPEAKER_01: So, Tyria has a target audience, right?
• 10:43
  SPEAKER_01: Which is people who are having their first experience of psychosis.
• 10:47
  SPEAKER_01: So what we're looking for is like that what they're experiencing is relatively new, like in the past year, two years, but maybe even less.
• 10:57
  SPEAKER_01: We're hoping to find people before they are receiving a lot of treatment.
• 11:01
  SPEAKER_01: So, like if we can reach someone before they're hospitalized, that's really amazing.
• 11:05
  SPEAKER_01: Doesn't always happen.
• 11:06
  SPEAKER_01: We're also really looking for people whose like primary concern is this um reality crisis, like extreme state around like what is happening, you know, maybe seeing or hearing things that others are not.
• 11:18
  SPEAKER_01: But we're kind of looking for like, how can we reach people who would otherwise be treated a very certain way for psychosis?
• 11:26
  SPEAKER_00: Yeah.
• 11:26
  SPEAKER_00: I mean, I did, I I was really curious too when I said I I heard there was an application process.
• 11:30
  SPEAKER_00: And so I went online and filled out enough information of the basic information to find to get to like what are the questions that are asked?
• 11:36
  SPEAKER_00: Yeah.
• 11:37
  SPEAKER_00: And I was actually really amazed by them.
• 11:39
  SPEAKER_00: So I want to just take a minute to read exactly what they are and hear what your reaction is to them.
• 11:45
  SPEAKER_00: They were, how did you become aware of Soteria?
• 11:48
  SPEAKER_00: What current challenges are you experiencing?
• 11:51
  SPEAKER_00: What strength or skills have you developed and are important to you?
• 11:54
  SPEAKER_00: How do you feel Soteria can serve you?
• 11:57
  SPEAKER_00: And the last one, please describe your experience with mental health services, if any.
• 12:01
  SPEAKER_00: And we're gonna get into this in a minute, but you've had experience yourself with a psychiatric hospital.
• 12:05
  SPEAKER_00: How do these questions and this process of admission compare to that?
• 12:09
  SPEAKER_01: It's person-centered, is the first thing I'm hearing, right?
• 12:12
  SPEAKER_01: These are all questions that can be answered by the person themselves, not a secondary figure.
• 12:17
  SPEAKER_01: You know, it's not uh an application to be filled out by a provider.
• 12:21
  SPEAKER_01: Um, it's not using clinical language.
• 12:23
  SPEAKER_01: Um, it's not asking about, you know, what are your symptoms?
• 12:26
  SPEAKER_01: It doesn't ask what is your diagnosis.
• 12:29
  SPEAKER_01: It's open, it's open-ended.
• 12:30
  SPEAKER_01: I do love the, you know, how do you feel Soteria can serve you because it really is so flexible what we're able to offer to people.
• 12:38
  SPEAKER_00: And you you've had your own experience with it, I believe it was an involuntary medical experience, right?
• 12:43
  SPEAKER_01: Yes.
• 12:43
  SPEAKER_00: How did how did that start?
• 12:45
  SPEAKER_00: Tell me about that insofar as you want to say.
• 12:48
  SPEAKER_01: It started when I went to a kundalini meditation with a friend, which is kind of a specific modality with a long spiritual lineage I was unaware of.
• 12:57
  SPEAKER_01: It was kind of represented in a more secular manner to me.
• 13:00
  SPEAKER_01: But yeah, I went to this meditation and I um began having some really intense um experiences, a deep, deep spiritual experience.
• 13:10
  SPEAKER_01: Um I kind of was like catapulted out of my body a bit um for a a long, a long stretch of uh a couple of weeks and where sleeping became more difficult.
• 13:23
  SPEAKER_01: I was having a lot of like religious and spiritual thoughts and talking about those things where that was part of my background growing up, but it wasn't something that was like a primary topic of conversation before this.
• 13:35
  SPEAKER_01: Um, and a lot of those things were really meaningful conversations I had.
• 13:39
  SPEAKER_01: But as it went on without sleeping, it became, it just started, I like to, you know, on a graph rate, it just started to kind of go off, veer off track into a place where like I was having strong convictions about things that were like clearly not real to other people, maybe thinking like cancer was about to be imminently cured.
• 13:59
  SPEAKER_01: And then I was, it happened to be near Christmas and went home for Christmas break, and my mom was really worried.
• 14:05
  SPEAKER_01: She was like, What uh, you know, what's going on with you?
• 14:07
  SPEAKER_01: And she didn't know what to do, so she called 911 because she to her, you know, it it seemed like I was having a crisis and acting really weird.
• 14:16
  SPEAKER_01: And she was worried um that she couldn't keep me safe.
• 14:21
  SPEAKER_01: So she called 911 and that initiated a whole, you know, the whole nine yards.
• 14:26
  SPEAKER_01: I mean, there's like police officers and handcuffs and the ambulance and straight jacket.
• 14:30
  SPEAKER_00: Like it's You were handcuffed.
• 14:32
  SPEAKER_01: I was handcuffed, yeah.
• 14:33
  SPEAKER_01: Yeah, I was loaded into an ambulance um without my mom or my phone or any of my stuff, and brought downtown to a hospital emergency room and wheeled in the back so you know it's bad.
• 14:52
  SPEAKER_01: You know, you know it must be serious when they're not, you know, they take you in the back door and they've get you treated right away.
• 14:58
  SPEAKER_01: Uh they cut my nose ring out and sedated me.
• 15:04
  SPEAKER_01: Like they they it forcibly injected me um and held me down, and they transferred me to an inpatient uh psychiatric unit at another at another facility in a straitjacket.
• 15:18
  SPEAKER_01: In the middle of the night.
• 15:19
  SPEAKER_00: In a straitjacket.
• 15:20
  SPEAKER_01: Yeah.
• 15:21
  SPEAKER_00: In the middle of the night.
• 15:22
  SPEAKER_00: Wow.
• 15:22
  SPEAKER_00: That sounds um that sounds potentially traumatizing, was it?
• 15:26
  SPEAKER_01: Yes.
• 15:28
  SPEAKER_01: Yes, it was.
• 15:29
  SPEAKER_01: It was very traumatizing.
• 15:31
  SPEAKER_01: It was very it was radicalizing.
• 15:35
  SPEAKER_00: How so?
• 15:36
  SPEAKER_01: Pardon my French, it's funny.
• 15:38
  SPEAKER_01: It it's so absolutely insane to me that this is how we treat people in extreme states.
• 15:42
  SPEAKER_01: It's just a reflection of how little understanding and how little compassion that there is for the human experience of psychosis.
• 15:52
  SPEAKER_01: Yeah, there's just really not no recognition.
• 15:55
  SPEAKER_01: Uh, I I remember like a I have the strong image, you know, of being surrounded by medical professionals in this emergency room.
• 16:04
  SPEAKER_01: There must have been like eight people in the room, you know, and maybe three of them were holding me down, and all the rest of them were just kind of standing there and staring at me with blank expressions.
• 16:12
  SPEAKER_01: And there was like one guy who I think was holding my hand and looking at me with a look of like kind of pity, but also kind of compassion.
• 16:20
  SPEAKER_01: And that was like the one, you know.
• 16:22
  SPEAKER_01: And I felt like this this one person was imagining what it would be like to be me, I guess.
• 16:29
  SPEAKER_01: And to everybody else, I was kind of a more of a case study.
• 16:32
  SPEAKER_00: What is your what was your reaction?
• 16:34
  SPEAKER_00: Were you feeling horrified, alienated?
• 16:36
  SPEAKER_00: Was it blowing up what was going inside your head?
• 16:38
  SPEAKER_00: What what was your reaction?
• 16:40
  SPEAKER_01: Having all those same events occur, but as me in this consciousness right now would be traumatizing in a different way, like a lot scarier, like a horror movie.
• 16:50
  SPEAKER_01: I think that in some ways the like the depth and transcendence of the state I was in, in some ways kind of shielded me from how horrific that experience actually was.
• 17:00
  SPEAKER_01: Um, because I was perceiving it just like in a totally different frame and and context.
• 17:06
  SPEAKER_01: But of course, uh when I got out, you know, like as I came back to more of my like usual, you know, bandwidth of what it's like to be me, I just do feel like a compassion for myself and a real rage that anyone else in that vulnerable state like would ever be treated that way.
• 17:25
  SPEAKER_01: It's just really so damaging and in inhumane.
• 17:28
  SPEAKER_01: Um and it's not necessary.
• 17:30
  SPEAKER_01: It's just not necessary.
• 17:32
  SPEAKER_00: What happened just really briefly?
• 17:35
  SPEAKER_01: Yeah.
• 17:35
  SPEAKER_01: I was there for I was there for two weeks, including Christmas.
• 17:39
  SPEAKER_01: Um, I was not psychotic at Christmas, but the doctor was on vacation.
• 17:43
  SPEAKER_01: So my experience, right?
• 17:46
  SPEAKER_01: The sum of those two and a half weeks prior up to the hospitalization, right?
• 17:51
  SPEAKER_01: From the meditation to the hospitalization, was like a profound curiosity for me.
• 17:58
  SPEAKER_01: That was like, how in the world did this happen?
• 18:00
  SPEAKER_01: Like, what the heck just happened to me?
• 18:03
  SPEAKER_01: And being in the hospital, it was like, well, what just happened to you is that, you know, you have a predisposition to mental illness.
• 18:10
  SPEAKER_01: And now we know that you're sick and like you should take antipsychotics for the rest of your life to ensure that this never happens again.
• 18:18
  SPEAKER_01: Um, and for me, that was not a satisfying explanation because the depth of what happened for me, right?
• 18:26
  SPEAKER_01: I didn't explain, I didn't speak a lot of detail here with you.
• 18:30
  SPEAKER_01: But like within the context of my psychosis, there were some openings and rearrangements of deep parts of myself that were points of suffering.
• 18:42
  SPEAKER_01: I don't know if anyone's ever had a feeling of like they were carrying some deep existential tension, you know, but I certainly was.
• 18:51
  SPEAKER_01: And in my experience of psychosis and spiritual emergency is another name, maybe for what I went through.
• 18:59
  SPEAKER_01: I found that that core tension that I have thought would be a lifelong companion was actually like untied and released from me.
• 19:09
  SPEAKER_01: So I had the experience that like this thing that was scary and threatening and labeled as an illness by other people was actually healing for me.
• 19:19
  SPEAKER_01: And it also just like provided me with a fundamentally big difference.
• 19:23
  SPEAKER_01: Yeah.
• 19:24
  SPEAKER_01: And it provided me with a fundamentally different way of orienting myself to life.
• 19:28
  SPEAKER_01: It's again, it's just very hard to communicate this to other people.
• 19:31
  SPEAKER_01: But like even the way that I go about my projects, my work, like the way that I approach a task with my mind is different now than it was before that psychosis.
• 19:42
  SPEAKER_01: Like uh sometimes I call it like an operating system upgrade, right?
• 19:46
  SPEAKER_01: It's like something has really been changed under the hood.
• 19:50
  SPEAKER_01: And maybe the user interface has a little bit of changes, but really it's a lot is happening under the surface.
• 19:55
  SPEAKER_01: And like who knows what that is.
• 19:57
  SPEAKER_01: But it's an upgrade, you know, like the system is running more efficiently.
• 20:01
  SPEAKER_00: Wow for me.
• 20:02
  SPEAKER_00: Because yeah, I think uh first of all, when anyone hears the word psychosis, our response is fear, um, typically.
• 20:08
  SPEAKER_00: And um and we don't imagine it as anything positive, but I think people might have some scary images, but not something really specific.
• 20:18
  SPEAKER_00: What is psychosis?
• 20:20
  SPEAKER_01: Psychosis is a clinical term, right?
• 20:23
  SPEAKER_01: So it's a label and and it right, it's a it's of clinical concern because it's distressing to people.
• 20:29
  SPEAKER_01: It's distressing to a number of people.
• 20:31
  SPEAKER_01: It's distressing to many of the people who are having the experience, though not all of them.
• 20:36
  SPEAKER_01: It's pretty much distressing to all of the people who are in that person's like social network and caring about them, you know, family members, employers, spouses, right, significant others.
• 20:46
  SPEAKER_01: So it's, you know, it's an object of medical concern, shall we say, you know, and labels that get lumped in, right?
• 20:52
  SPEAKER_01: Like schizophrenia, schizoaffective disorder, um, people with like bipolar disorder and depression, um, labels, you know, diagnostic labels can also have like psychotic features, they'll say.
• 21:03
  SPEAKER_01: But having a label for something does not tell us what is going on, right?
• 21:10
  SPEAKER_01: Like it identifies that something is going on.
• 21:14
  SPEAKER_01: So we see the archetype, you know.
• 21:16
  SPEAKER_01: We see, oh, it sometimes happens to some people that they see and hear things that aren't there, that they feel like paranoid and not trusting of people that they used to feel comfortable around.
• 21:28
  SPEAKER_01: They might have really strong fixed beliefs about things that are like easily proven false, um, or maybe not so easily proven false, which is more challenging.
• 21:37
  SPEAKER_01: What has been really underinvested in is phenomenological research about psychosis.
• 21:43
  SPEAKER_01: It's a big word for saying what is it like to be on the inside, right?
• 21:48
  SPEAKER_01: What is it like to be having that experience?
• 21:51
  SPEAKER_01: So, what I'm interested in is exploring that, right?
• 21:54
  SPEAKER_01: Like the what is it like?
• 21:55
  SPEAKER_01: And in that way, soteria is a very phenomenological.
• 22:00
  SPEAKER_01: Oriented space, right?
• 22:01
  SPEAKER_01: It's a space where like our primary interest is what is it like for you right now?
• 22:08
  SPEAKER_01: And also I'll share with you what is it like for me to be with you in this moment?
• 22:13
  SPEAKER_01: And like we will learn something together.
• 22:16
  SPEAKER_01: I just think that there's so much to be f gained from engaging like with the firsthand lived experience of psychosis, giving people supportive space to explore their experiences and to become more curious about them as a culture, not in a sense of trying to find a definition to stop the experience, um, but trying to understand what it is that psychosis is trying to say.
• 22:40
  SPEAKER_00: Would you say that your reaction is common, frequent, a majority of how people feel who are going through an experience like that?
• 22:49
  SPEAKER_01: I will say that, you know, in working at Soteria, I have encountered other people who are similarly curious and engaged with their experiences.
• 22:58
  SPEAKER_01: But there are also a lot of people who are afraid.
• 23:00
  SPEAKER_01: But it seems like there's a large subset of people for whom their fear is originating like outside of themselves.
• 23:09
  SPEAKER_01: Their fear is a reflection of the fear that is they're seeing in like their eyes of their parents, in the eyes of their providers.
• 23:16
  SPEAKER_01: Their fear is a reaction to the narratives they're being told about what is happening to them, that it's a progressive brain disease, that they're gonna need to be on medication the rest of their life, that maybe they're not gonna have a good life or they're gonna die early.
• 23:29
  SPEAKER_01: And there are also people for whom the experience they're having is very frightening, that they're hearing voices that are persecutory, right?
• 23:35
  SPEAKER_01: Like maybe they're hearing a voice that says, like, you're so ugly and fat, you should kill yourself.
• 23:40
  SPEAKER_01: Um, or even like worse, maybe a voice saying that they've done some very horrible, horrible deed that would get them kicked out of society and everybody's gonna know about it.
• 23:50
  SPEAKER_01: That I mean, that's a really scary experience to have.
• 23:52
  SPEAKER_01: Um, but psychosis is a spectrum, a spectrum, and there's just like within that spectrum that's all getting the same label, there's like so many different ways that it can be for people.
• 24:03
  SPEAKER_00: That's absolutely fascinating.
• 24:04
  SPEAKER_00: And I was thinking about, yeah, here, you know, someone who hears voices, um, how it could be that could be the voices themselves can be scary.
• 24:11
  SPEAKER_00: But also I've heard many times people say, yeah, I didn't want anyone to know I was hearing voices.
• 24:16
  SPEAKER_00: And I just thought if I anyone finds out they're just gonna force me into hospitalization and I don't they'll think or they'll think I'm crazy.
• 24:21
  SPEAKER_00: I hear that over and over again.
• 24:23
  SPEAKER_00: So there's that both those aspects, what's happening outside and what's happening inside.
• 24:28
  SPEAKER_01: Yeah, and that question, like, am I going crazy?
• 24:31
  SPEAKER_01: But also like even that as a question that's really seeded within us from a culture that has a stake in us like living and experiencing ourselves in a certain kind of controlled manner.
• 24:43
  SPEAKER_00: Yeah.
• 24:43
  SPEAKER_00: I think most of us when we experience something like that, we don't go like, hey, I might be getting an operational upgrade, as you just put it.
• 24:50
  SPEAKER_00: So what happened when you got you spent two weeks in in the hospital?
• 24:53
  SPEAKER_00: What happened when you got out?
• 24:54
  SPEAKER_00: Tell me what tell me where you went after that.
• 24:56
  SPEAKER_01: Yeah, I was just looking for like, okay, am I crazy, right?
• 25:00
  SPEAKER_01: Bringing the question comes back, you know, am I crazy?
• 25:03
  SPEAKER_01: Or are there other people who are also thinking the same thing who aren't satisfied with these explanations?
• 25:10
  SPEAKER_01: And so I was looking for another frame that might more readily welcome like the truth of the experience that I had.
• 25:18
  SPEAKER_01: That's when I found Mad in America, which is like a news, a news source.
• 25:22
  SPEAKER_01: There's kind of opinion pieces and editorials about like alternative mental health interventions, um, sometimes expressed as like critical psychiatry lens, also people, you know, sharing lived experience of harms within mental health treatment as usual.
• 25:39
  SPEAKER_01: So I found some stories there that were validating that like that I related to, um, feeling like what had happened to me was wrong and unnecessary.
• 25:48
  SPEAKER_01: There was nothing like Soteria available for me.
• 25:51
  SPEAKER_01: There was no peer support respite.
• 25:53
  SPEAKER_01: And it's just unfortunate that there was not any other options.
• 25:56
  SPEAKER_00: How'd you first learn about Soteria?
• 25:58
  SPEAKER_01: Yeah, like I honestly don't even know.
• 26:00
  SPEAKER_01: I think it was just somehow through Madden America.
• 26:02
  SPEAKER_01: Like I went down a rabbit hole after I found Madden America, and then I found something about the original Soteria, which was in a in a bite size, right?
• 26:12
  SPEAKER_01: It was a research study designed to answer the question can a person with psychosis fare as well or better in a minimally medicated community-based environment as they would with treatment as usual with pharmaceuticals in an inpatient setting?
• 26:28
  SPEAKER_01: And this was a randomized controlled trial happening in San Jose, California in the 70s.
• 26:33
  SPEAKER_01: Um, and the results were good.
• 26:35
  SPEAKER_01: The results found that indeed they fared as well or better as their um, you know, matched companions in the hospital.
• 26:43
  SPEAKER_01: And that resonated with my experience.
• 26:46
  SPEAKER_01: Um, and then I found out that there was one operating right here in Vermont.
• 26:50
  SPEAKER_01: So I moved to Vermont to work there, and the rest is history.
• 26:55
  SPEAKER_00: Do you do you remember the first time you found out there was one in existence?
• 27:00
  SPEAKER_01: The first time I found out about Soteria, I did not find out there was one currently existing.
• 27:04
  SPEAKER_01: And I was like, man, it would be really great if that was still a thing.
• 27:08
  SPEAKER_01: And then sometime later I was like looking for an internship and I looked, started researching about Soteria again, and I was like, oh my gosh, there's one in Vermont.
• 27:17
  SPEAKER_01: Yeah, I sent them an email and they were real quick to get back to me.
• 27:20
  SPEAKER_01: And they were like, we can give you an internship, but also we could just give you a job if you want to work here full time.
• 27:25
  SPEAKER_01: So I moved to Vermont, sight unseen.
• 27:29
  SPEAKER_01: Yeah.
• 27:31
  SPEAKER_00: Wow, that's that strikes me as pretty, pretty courageous.
• 27:35
  SPEAKER_01: Yeah, it just felt like the right next move.
• 27:39
  SPEAKER_01: I was like, had that youthful, like, well, I could do anything, you know.
• 27:44
  SPEAKER_01: I could go be a I'll go be a philosopher.
• 27:46
  SPEAKER_01: I'm gonna go get a PhD or whatever.
• 27:48
  SPEAKER_01: And then what happened to me is that I was hospitalized against my will, and I was like, this is so wrong.
• 27:55
  SPEAKER_01: And I had this profound experience.
• 27:57
  SPEAKER_01: I was like, this is so interesting.
• 27:59
  SPEAKER_01: Why is nobody talking about this?
• 28:00
  SPEAKER_01: And why are we doing this to people?
• 28:02
  SPEAKER_01: And then I found out, oh, there are people who are talking about this.
• 28:05
  SPEAKER_01: It's just not really in the mainstream, but like it's a long lineage.
• 28:09
  SPEAKER_01: I'm in good company having these ideas.
• 28:12
  SPEAKER_01: It's healing, right?
• 28:14
  SPEAKER_01: When you ask great, is was it traumatizing?
• 28:16
  SPEAKER_01: Yes, it was deeply traumatic to be on the receiving end of the violence, you know, state-sanctioned violence that is psychiatric incarceration.
• 28:25
  SPEAKER_01: I know that's an extreme way of saying it, but it it really is, you know, you have no choice.
• 28:30
  SPEAKER_01: You know, you're injected with things that changed your experience of yourself and it's forced.
• 28:34
  SPEAKER_01: I mean, it's messed up.
• 28:36
  SPEAKER_01: It's it's deeply disturbing to receive that experience.
• 28:40
  SPEAKER_01: Um, and to be part of a community of people who are creating an option so that maybe somebody else's mom can call us instead of calling number one.
• 28:50
  SPEAKER_00: Soteria House in Burlington, Vermont is the only one uh actually in the United States right now.
• 28:56
  SPEAKER_00: How many do you feel like in an ideal world there would be?
• 29:00
  SPEAKER_01: They would be in every community.
• 29:02
  SPEAKER_01: So there would be like a thousand.
• 29:05
  SPEAKER_01: You know, there'd be like as many Soterias, maybe like half as many Soterias as there are McDonald's.
• 29:15
  SPEAKER_00: Uh I'd like a Big Mac in three months in Soteria House, please.
• 29:18
  SPEAKER_00: That that kind of how she rolls.
• 29:21
  SPEAKER_01: Yeah.
• 29:21
  SPEAKER_01: Also, you know, you imagine, right?
• 29:23
  SPEAKER_01: Like, okay, so then if there's half as many Soterias as McDonald's, then there's like however many teams of 15 people are operating those Soterias.
• 29:32
  SPEAKER_01: I mean, at that point, right, if we transport it to that reality, there would be like an army of people who are seeing what we've been seeing, which is like you can relate to people in such a fundamentally different way.
• 29:46
  SPEAKER_01: And it really helps and heals everyone.
• 29:48
  SPEAKER_01: And I'm not trying to be, you know, utopian and say, like, oh, you know, people come into Zoteria and like all their problems are solved or like they never have, you know, psychosis symptoms again.
• 29:58
  SPEAKER_01: It's not so cut and dry like this.
• 30:00
  SPEAKER_01: I, you know, but like for me, it's like it's easy to emphasize the positive because I s I come oriented from thinking about like the harms that are not happening, right?
• 30:09
  SPEAKER_01: Like the the things that otherwise these people would be exposed to that are like removed from the equation when you come to Soteria.
• 30:16
  SPEAKER_01: How can we just like give people like a a small, you know, a small like place a place to rest and and and be really like received, you know, with authenticity and gentleness.
• 30:28
  SPEAKER_01: It can't change everything, but it can give an experience of like hope and connection that really can stay with you like forever.
• 30:35
  SPEAKER_01: And these people that I've worked with in Soteria, right?
• 30:38
  SPEAKER_01: Like that I've built relationships with both my colleagues and the residents, like right, who I'm there to be with.
• 30:42
  SPEAKER_01: Like it's like they're like, you know, they're like with me, like they've they've changed me.
• 30:48
  SPEAKER_00: If we're gonna get to uh as many, half as many Soterias as there are McDonald's, what do you see as a next step?
• 30:54
  SPEAKER_01: Realistically, in the United States, if we want to have as many Soterias, half as many Soterias as there are McDonald's, then Soteria would need to be classified as an evidence-based intervention.
• 31:04
  SPEAKER_01: For us, we consider it an evidence-based intervention because there are research studies about it in both the historical studies from the 70s and 80s of the original Soteria, which operated for 12 years before it ran out of grant funding.
• 31:18
  SPEAKER_01: Um, and also there are Soteria programs abroad, which are also being researched.
• 31:22
  SPEAKER_01: So, like we believe that there is the evidence is there, and in our experience, there's the evidence.
• 31:28
  SPEAKER_01: However, it does not meet the standard of that SAMHSA is looking for.
• 31:32
  SPEAKER_01: So there needs to be more comprehensive research studies about Soteria in order to create the designations that get funding.
• 31:39
  SPEAKER_00: Aaron Ross Powell And there's there's a community of people that are often talked about are people who, and to use clinical terms again, have low insight.
• 31:46
  SPEAKER_00: Sometimes the term anosynnosi is used.
• 31:48
  SPEAKER_00: Do you find that people have a difficult time of recognizing they're in distress?
• 31:52
  SPEAKER_00: And does that mean that they're not they wouldn't be such a great fit for Soteria?
• 31:55
  SPEAKER_01: Aaron Powell It really doesn't matter.
• 31:57
  SPEAKER_01: It doesn't actually matter what they think is going on for them to come to Soteria, frankly speaking.
• 32:04
  SPEAKER_01: In fact, one of my colleagues likes to say, like, the ideal candidate for Soteria is someone who in our first meeting says something like, This is all just a big misunderstanding.
• 32:15
  SPEAKER_01: Right.
• 32:16
  SPEAKER_01: Which I think to a clinician might be like, that's like textbook and nos and nos, yeah.
• 32:21
  SPEAKER_01: You know, it's like, yeah, it doesn't matter what you think is going on to come to Soteria.
• 32:26
  SPEAKER_01: And in fact, if you think something other than illness is going on, like all the better, because like we can just talk about it together.
• 32:34
  SPEAKER_00: Last question.
• 32:35
  SPEAKER_00: If someone wants to find out more about Soteria House, where would you send them?
• 32:39
  SPEAKER_01: Yeah, I mean, you can go to the Pathways Vermont website to see like our Soteria Vermont.
• 32:44
  SPEAKER_01: I will say that white page doesn't have the most information.
• 32:47
  SPEAKER_01: If you really want to learn more about Soteria, I recommend this book, Soteria Through Madness to Deliverance, which is like um part memoir, part, you know, research report um about it's it's written by the the people who are involved in the original Soteria project in the 70s.
• 33:04
  SPEAKER_01: Includes like lots of interviews and super cool book.
• 33:08
  SPEAKER_01: Um also, if you're just interested in like alternatives in general and wanting to get connected with people, um I recommend both the Mad in America website and also the um ISPS, which is the International Society for Psychological and Social Approaches to Psychosis.
• 33:26
  SPEAKER_01: There's a lot of folks into Soteria in that network, and they offer great webinars and everything all the time.
• 33:34
  SPEAKER_01: And if you or somebody that you love is going through something like that makes you think, oh, maybe my loved one, you know, would be great for Soteria.
• 33:41
  SPEAKER_01: Um, another cool resource is the Hearing Voices Network, which is an international group of people with voice hearing experience that's dedicated to providing resources for navigating that experience to others.
• 33:54
  SPEAKER_01: And they have support groups virtually and all over the place.
• 33:57
  SPEAKER_01: So, you know, if you don't have a Soteria near you, um you still might be able to get linked up with a Hearing Voices group.
• 34:02
  SPEAKER_00: Betsy, thank you so much for coming on Brainstories Connections today.
• 34:06
  SPEAKER_01: Yeah, thank you for having me.
• 34:08
  SPEAKER_01: It's been delightful uh to talk about all of this with you.
• 34:11
  SPEAKER_01: It's just, yeah, I love it.
• 34:13
  SPEAKER_01: So thank you so much for having me and for the attention of the listeners.
• 34:19
  SPEAKER_00: Thank you.
• 34:20
  SPEAKER_00: It was so so illuminating.