Hello and welcome. Thank you for joining the third national conference on advancing early psychosis care in the United States, presented by SMI Advisor. We are pleased to present today's session, Culture of Mental Illness, Sensemaking of Psychosis and Recovery. Hello, my name is Danny Sosa, and I'm a certified peer specialist in the Early Intervention Program for Teens and Young Adults offered by OnTrack New York and Northwell Health. Pretty much as my story kind of unfolded, I kind of wanted to make one of my purposes to combat the fears and stigmas that certain young people get, especially when it's their first time. And I support people by doing groups, talking to them one-on-one, doing activities, answering questions, and kind of helping them in their journey towards recovery. Thank you for having me. Hi, I'm Patrick. I work with Support Education and Employment and as a peer support for Navigate in the counties of Michigan. I've been with them for about eight years. I've worked as a family support partner. I've helped run a small non-profit. I try to do things locally and nationally to build on our rights and advocate and use my lived experience to try to help other people. Thanks for having me. Hi, everyone. My name is Chacku Mathai, and I'm an Indian American that is also someone who's an ex-patient and experienced psychosis as a young adult and a teenager. And the challenges that me and my family had in being engaged by the system and mostly needing to find alternatives over 35 years ago, in my experience, resulted in a lot of advocacy that we needed to do in order to create alternatives. And so I'm fortunate to be part of OnTrack New York Now, which is a kind of model that coordinated specialty care for early psychosis that we wished we would have had. And so this presentation is part of our chance between Patrick Gagne and I to offer our journey of sensemaking in psychosis and our approach to doing that with each other and for ourselves, for our family, and for those we work with. So thank you for having me. Danny Sosa, Patrick Hoffman, and Chacku Mathai have no financial relationships with commercial interests or conflicts of interest to report. All right. Thank you. And so one of the things we, and I personally like to do, is make sure we do a land acknowledgement. We are each likely participating on the ceded or unceded land of an Indigenous people. And so for me, where I used to live and work in New York City, it was the Lenape homeland. Now I'm back in Rochester in Western New York. So I'm also acknowledging the traditional territory of the Haudenosaunee and by honoring the sovereignty of the six nations, the Mohawk, Cayuga, Onondaga, Oneida, Seneca, and Tuscarora. I ask you to join me in acknowledging their people, their elders, both past and present, as well as future generations and any other nations that you may be serving on together and with together. Most of the institutions for which we work must also acknowledge that they were founded upon exclusions and erasures of many Indigenous peoples. So this acknowledgement demonstrates in a small way our commitment to begin the process of working to dismantle the ongoing legacies of settler colonialism. So for our learning objectives, we're going to try to accomplish a lot today. One is the direct relationship between racism, anti-racism, and social determinants of health. So we want to define those features of racism, anti-racism as social determinants of health. We want to help identify one or two, one to two additional social determinants of health that impact racial inequities and health outcomes. We want to be able to identify two to three strategies for engaging a person and family's sensemaking of psychosis and recovery, and identify one to two cultural and social factors that may affect a person or family's choices or levels of engagement in early psychosis programs. The way we'll do this is mostly through an interaction between Patrick, Danny, and I. There are some slides we'll be going through together that will hopefully offer this information and more. So just as a quick backdrop, I mean, in my own personal experience, I connected racism and xenophobia as part of my own experience of psychosis. I think we want to emphasize here that there is a legacy of racial oppression and segregation by psychiatry. For example, Samuel Cartwright, a psychiatrist, with the development or the description of a condition called dripotomania, a disease causing Negroes to run away was the way it was written by Samuel Cartwright. The creation of segregated public psychiatric facilities, rejecting the requirements of the Civil Rights Act of 1964, and a number of other issues, whether it's the limited post-colonial discourse and development of strategies for Asian mental health, deconstructing and decolonizing current mental health practices. The idea that most of the disparities and experiences that we have, have been called upon since 1970, even further. But the dismantling of structural racism was called for in the American Journal of Psychiatry to create new and powerful anti-racism mechanisms that will operate continuously and publicly throughout the country in all aspects of the psychiatric care system. So we have since had decades of struggles to address racial inequities. We've seen an increased use of force and coercion. There have been, you know, since the killing of George Floyd by police this last summer, global protests and demands to end systemic racism. And of course, because of COVID-19, an increasingly disproportionate number of people affected by COVID-19 in their health and mental health per the CDC. So this backdrop calls, you know, us to and compels us to really analyze our experiences, including how we support each other and perceive psychosis and interpret our experiences together with the context of social determinants and racism as a factor. It's not about if racism is a factor, it's about how, and about how these experiences have been affecting people today. So let me stop there and go to our next slide. So one of the ways in which Danny, Patrick, and I are going to talk to all of you about this is by starting with a story. We're going to reflect on this together. I'm hoping you'll join us in this reflection. And this first story is that two fish are swimming along in a river and an older fish swims by. And as he swims by, asks the other two fish, hey, how's the water? One fish says to the other fish, what the heck is water? So I asked this story just because I really want to dive in now and get Patrick and Danny in on this. You heard a little bit of the backdrop, Patrick and Danny. Of course, we've been talking about this for a while. But what the heck does this story have to do with any of what we're talking about? And what does it mean to you? Who wants to start? Danny, you want to give it a shot first? Yeah, sure. For me, I think, I think the one thing that grabs me especially of this is the idea that as time progresses, sometimes we either lose or we even have different viewpoints of what exactly is like this unknowable or invisible stuff to us. I think, yeah, especially like the older fish, it's not that he doesn't understand what it is to be a young fish. It's that I don't think he lives in this world where to him, water is something that everybody knows. And he doesn't understand a world where you couldn't but the younger fish don't have that perspective. They don't, they haven't had that conversation yet or they're going to, but there might have it with different factors or variables or maybe they just, frankly, it doesn't affect them that way, the way it affected the older fish. And to me, it relates to our work because much of my job and my role comes from peers before me or people asking for my role, asking for somebody to have a similar experience, asking for not to feel alone, not to feel powerless and stuff like that. So to me, it shows that the reason why these questions are so hard is not because no one wants to ask them, it's that sometimes we don't, it's not until we put ourselves out there and ask the question, whether it's right or wrong, that we actually get a proper response and a further conversation on the subject. Wow, thanks, Danny. I'm going to have to come back to you for more on that, what you just said. Patrick, how about you? How did the story hit you? This makes me think about how like with so-called psychosis, you know, the person asking the question might already have this set way of thinking. And then the individual may say something like, well, it's H2O, or there's all this stuff around. But beyond that, there's sky and this whole other world. People might say, you know, that's just so far out there, there's no way, you're completely wrong about everything you think and believe, where the fact is that, you know, there are things like water that we might not see, or there might be something beyond the water that we don't see. So it's all based on perspective. And, you know, different things are possible. Yeah, that's well said. You know, for me, I mean, it comes down to how I make meaning out of things. I mean, the culture is meaning making. And so when someone asks me about the water, it's kind of like when they ask me about my culture, I don't know what exactly they want me to tell them, because it's something that I'm completely immersed in. Same thing with my experiences that were extreme, whether it was hearing voices or seeing things that other people couldn't see, or experiencing or sensing things that other people couldn't sense. It was in the water, but I couldn't quite articulate it, first of all. It wasn't the kind of thing I could articulate in words a lot of times. And even in my own sensemaking, there wasn't anybody really like this older fish, who was even bothering to ask me, they were just making their own interpretations about what the water was for me. The water is bad, the water is good, the water is too warm over here, the water is too, don't swim over there, swim over here, stay here, stay, don't do that, don't do this. Even teachers, there was just, people didn't know how to ask me questions. And the whole idea was me coming up with ways to figure out what the heck they were talking about, without really understanding that everything that I was experiencing, I could also reflect on and somehow make meaning out of. And that's why it's so interesting to talk about water, because it is so immersive. And like you said, Danny, the fish don't even necessarily know what they're swimming in, because it's just been part of what they have, they haven't articulated it as water, yet the older fish has. I mean, say more about that, where were you going with that in terms of the, or where do you go in terms of this distinction between the older fish and the younger fish and their meaning making of water? I think also as, for me, as time goes on, what we take for granted, I think changes as well, like the opinions we have, because I feel like, I feel one day the older fish maybe remembers, or it might be possible that there is a moment where the older fish doesn't know what water is either. And the person that was teaching him was either an older fish or a similar fish, or it's just very hard as time goes on for you not to be affected by, like you said, your culture, as time goes on, your experiences become memories, and those memories become your judgment, they become like, you think of a certain situation because you had something similar happen to you before. And I think the difference between an old fish and a young fish in this case is that sometimes no one has asked the question on the young fish, no one has asked the question of somebody like, how are you feeling today? How are you really feeling? Not just, I'm feeling good and stuff like that, but are you feeling bad? Like, is there anything we can do to help and stuff like that? And I think, as time goes on, it usually does get better. But I think the work is in asking the question and the work is in, you know, going deep into what exactly is water, not with the goal to figure out exactly what water is, like, whether it's H2O, or whether it's like, the air we breathe, where we get our nutrients and stuff like that, but more with the purpose of together, everybody sharing an opinion, and hopefully getting to the truth of the matter. And maybe if we're lucky, we get to the H2O answer, but sometimes putting the word does sometimes work enough, and hopefully the future generation can build upon that. So for you, there's a kind of a co-construction of what's understood and what things mean. It's happening with people, it's not something that happens on your own or independently. It requires people to talk with each other about it. Yeah, because I feel as I become older, the more I know the people that inspire me are inspirational, because even though sometimes they're so much better equipped to answer certain questions or have a skill set that works perfectly with what they want to do. I have not found a single situation when somebody has done it alone. You know, I haven't found a single one member of society that has done everything by themselves, apart from, like, an extraordinary genius that, like, just for some reason was almost made for that, you know, discovery or symphony or whatever have you. But I think most of it is through communication, even. I think one of the things that I always am impressed by is reading old letters, you know, reading correspondence between two people. And sometimes they're like-minded, and sometimes they're different-minded. But I think even that itself, you know, it's kind of like this question, like, you know, read any correspondence between any, like, society that has writing, and you'll see these questions, you know, what is the meaning of life? What, you know, how do you feel? Like, this situation happened and affect me deeply, and I'm sorrowful. And you'll hear these emotions that just bleed on the page. And I think highlighting that, I think it's important, because there could be a world where we don't even get to ask that question, you know, we won't even get to, we'll take it for granted, you know, we'll become the old fish. And we think, like, oh, yeah, that's been solved. No one's going to ask that. And I think that would lead to us overlooking something that should be asked. And, you know, and sometimes I think that leads to skipping over an opinion, you know, skipping over somebody that is like, this is not water, this is air. And, you know, sometimes it is looked at as an uncommon belief, but it is sometimes worthy of discussion, or at least bringing it up just to see where is this person coming from? Why do they have this idea that this is not water? And do I think it always leads to perfect solutions? No, but I think the conversation is very important. Wow, that's interesting. Patrick, how about you? Anything else you wanted to add to this conversation? You're on mute still. Thanks. Pretty much what you guys are already saying, but I'm just thinking about how you know, there's, you can kind of make your own culture of how you interpret things. And, you know, sometimes you might even want to think of something new that people aren't going to believe, because you just want something bigger to happen. And, you know, I just think that that freedom is important that we can perceive things how we like without being told how they really are. You know, I was going through a thing around this older fish, you know, as you know, Danny, you were talking, my reaction is that I was hoping that the older fish was doing something more like trying to raise consciousness among his other fellow fish about what, you know, his kind of experience has been. Is that, in other words, hey, did you know there's stuff, you know, called water affecting us here, you know, and, and, and the fish didn't call it that yet. Maybe they had their own ways in which to describe it. But what, you know, what the third fish in this older fish was really doing was saying, hey, did you know, like, did you know that there was this, there's this factor and I felt like, until someone did that for me. So for me, I think of there, there was a man, a man diagnosed with schizophrenia named Lionel Aldridge, who was a Green Bay Packer, you know, NFL championship football team, first man diagnosed with schizophrenia that came out as a football player to, to be diagnosed with a psychotic disorder, you know, and I got to see him speak. And he, you know, and one of the things I wanted to ask him about was that when he talked, he talked as though he was free, you know, in many ways from a lot of what I was struggling with. And one of the things I was struggling with was this belief that I would always go through the same thing over and over and over again. The cyclical nature of the illness is what I was taught at the time. And so I asked him about that. Is this, is this really true? Is this a cycle? You know, in this way that, that I'm being told that I'm always, you know, going to keep going through this two steps forward, two steps back, or three steps back and that sort of thing. And he said, no, man, that's not, you know, how we grow. We, we, we grow out and in, and he kind of started describing this sphere, you know, the way these cycles were more of these, every cycle was different. He said, yeah, it looks like the same thing to other people who are going through it. But if you're going through it, you know, that what you're going through is completely different this time around, because it can't be the same because it's based on all the experiences you just had up to this point. How could it be the same experience you had last year? Because you didn't have the experiences you had this year to inform it, you know? And so it, it forced me to rethink how I was accepting other people's descriptions of what I was going through and starting to come up with my own critical analysis and consciousness about it. So let me stop there, but if there was anything else, I didn't want to close it off, Patrick or Danny from, from this story. I wanted to move to our next step when you're ready. Yeah, I think we can move on. I did just want to add that, like, I did have a similar experience. For me, it was being with, in a group of other people going through a similar experience and, yeah, and we, yeah, we kind of bonded over a painting and the painting was, I think it was, it was on the wall. I think it was black and white. So I guess just ink and a little bit and a little bit abstract. And it was just pretty much like a regular day in New York City. And there was like a cab or a car that looks like a cab and a bunch of lines kind of like intersecting. And it's very, to me, I still remember it. Like it made definitely an impression on me. And for me, it was like, when I looked at it, it perfectly described what I was going to. And I think that to me, like, is sometimes what words do and what conversation does and what, you know, relationships and society, like, and culture, all do to somebody is like, there is something about, you know, living life that gives you that understanding of what you're going through. And you can finally be like, oh, this is why this happened. Or, or at least I feel that because this gave me happiness, I can now have purpose and this can move on and improve myself as a person. And I think that's what, that to me, that's why like, I'm always happy to like go into these like theories and intangibles is that going through them, like, kind of like what Patrick was saying, like, it does give you meaning, like, because there are some people that are going to come at it with an angle that you've never even seen before. And I think those things like are really helpful and it gives me hope, you know, this is what the work I do. I wanna go to the person that doesn't, it's not that they don't believe in water, but has a different word for it or has a different experience for it. Yeah, that's great. Thanks, Danny. How about you, Patrick? I think you saw that. All right. All right, well, let's move to the next. I think this is a great setup for our next part of the conversation. I think, you know, what we both, you know, all three of us wanna offer you today is this, you know, a glimpse, you know, it's really difficult to offer, you know, any full experience of our personal experiences, especially in this journey of sense-making around, you know, what's described as psychosis and especially what's described as recovery. So, I mean, I'll start, I'll take a turn and then I'll, you know, pass it on to Patrick and Danny to take a turn as well and talk about our personal experiences in this journey, specifically of sense-making in psychosis and recovery. For me, I like to talk about it from the perspective of outrage and injustice because I felt like in the water was the rejection and loss of belonging that I felt as my family immigrated from India and Kuwait. I was born in Kuwait and we were South Indian family. We came to New York City and then went upstate to Rochester, New York in the 70s. And that was at the time right on the heels of the Civil Rights Act and the Housing Rights Act and Kodak was not hiring people of color yet, but they just started to after all this advocacy by people of color in the city. And any people of color who had moved into Rochester at that point, and I'm talking about 1972, 73 here, were perceived as taking, you know, white people's jobs away, taking white people's homes and moving into their neighborhoods. And there was a lot of resentment about this at the time. And so as a young person, I was just a toddler, but I felt this, I mean, I really experienced this at a visceral level and I feel like, you know, I have memories of my father trying to keep me safe from people who are making fun of us and kind of squeezing my hand to walk faster as we walk down the street or even crossing the street to avoid people. And I would turn around and see who these people were that were making fun of us or acting, you know, in a hostile way towards us. And I saw, I would watch people even get mad at my mom for not being able to say her name in a way that they could understand, you know? And I watched that over and over and over and over again. And I would just see other people blame us for their frustration about just us being who we were. And that, I just could not get outside of me. And it started in school. I saw young people, you know, saying things about me, telling me to go back where I came from. Their parents would say that, go back where we came from. I wasn't safe in my hallways, in the bathroom, in the coat room, in the sidewalk, at the bus stop. I had my guard up all the time. So racism and these kinds of social determinants, which are including the sense of security that I felt in my own home or in my own neighborhood or in my own school, even teachers telling me to speak English as opposed to my primary language of Malayalam, when I would explain just even one word, this is velum, you know, in my language, they would, you know, really harsh tone say, you're an American now, that's water, you know? And so these were messages in the water, speaking of water, right? That made me realize that I wasn't safe. And so I don't know when exactly, but I started to interpret even my parents starting to judge me and not want me around and be frustrated with me. Pretty soon, I thought my mom was watching me eat because she was waiting to see when the poison would take effect, because she was poisoning my food and trying to kill me. The loss of trust and safety in my own family, even the voices, the sound of their voices speaking my primary language of Malayalam used to be soothing. Then it started sounding like they were plotting against me, I would start to see shadows in my bedroom and bouncing around and pretty soon, one of them was trying to get inside my body. So each of them, I mean, it just goes on and on. I have so many of these experiences that were so hard for me. I started to hear what other people were thinking as I was walking through the halls in school and I would have to go outside of the school, go all the way around. I started using drugs to make myself feel better and even that stopped working. So I guess for me, I start there because a lot of these factors are very much about my story of sensemaking in the world. I interpreted the world in this way and I can't separate what I went through from a psychosis perspective. And I'm not questioning that these were experiences that were problematic, they certainly were for me, but there was also experiences within them that were very helpful to me. There was one quiet voice. She would always tell me when it was time to leave a room or watch out for somebody or take care of myself or she was the voice that would tell me about my mom at times. And she eventually became the voice that told me that it was okay to eat my mom's food. You know what I mean? So there were some helpful scenarios in my life. So it got confusing because what everybody else was saying would have been a problem, I was actually finding was my truth detector or my lie detector or my sense of safety detector in the world. So let me stop there and kind of see if you all wanna, Danny or Patrick, who wants to take a turn and go next? Yeah, for me, I guess the journey kind of started before I had the experience with voices and unusual beliefs and all that. I got into punk rock in high school partly because I just felt excluded from everything and struggled with mental health, depression and that sort of thing. So I kind of got this idea of like thinking outside of the box and started pushing for human rights and believing in something bigger than the system that was there before us. And it wasn't until a couple of years later that I started having experiences where I would hear voices and start believing things that didn't make sense to everyone else. And at that point, it was actually, it got pretty bad. It was a negative experience a lot of the time, but I still think of it as part of my evolution. Like maybe even in the beginning before that happened, my process was to learn more, to learn about unusual thinking and how that can help people. So yeah, I think that was all part of my journey. And at the point I'm at now, I can use that experience to help other people. My thinking that's different is also thinking that it comes up with new ideas that other people wouldn't come up with. So, I mean, ultimately it's a positive experience. It was a struggle to have voices intruding and taking over my mind. But over time, as I dealt with those things, they became friendly and I could cope with them and even they entertain me now. So yeah, that's my journey. Thanks, Patrick. Danny? So for me, it's a little bit similar like that. I have a shorter time since my extreme kind of experience. When I was younger, I was very isolated. Like I am very introverted person. So I'm very comfortable with my own thoughts for a long time in my life. And it wasn't until I was around 24, I had a traumatic experience. And kind of when you're looking at that sign of desperation and kind of despair, I didn't make it out on the other side. It kind of injured me a little bit. And my kind of response to that was to believe that I could find a bigger purpose than what I was now. At least the point where I just kind of wanted to be someone that was proud of my life, be someone that was active, be someone that looked out for my family, tried to support them in any way I could. And while this was going on, I kind of had a similar experience with chocolate where the people that comforted me, my family and friends were slowly becoming my enemy and I couldn't pinpoint why. But to me, it seemed that that was almost like a warning sign, something's going wrong because this is counter to what I know and counter to what I believe in. And as time went on, I kind of, I just beyond like my experiences, I do remember one thing that they kind of brought me out of that kind of cycle or spin, which is that I noticed the differences between my family. My family is Mexican. They mostly speak Spanish. A world, the older generation, the younger generation is thankfully bilingual. So they're a little easier to adapt. And there are some other generation that speak bilingual as well. They speak English as well. But I did notice a disparity. I did notice the frustration of my mom trying to help me, even though I thought sometimes she was my enemy. There is this sense that I had that when my mom spoke Spanish, I almost had a wish right then and there that I could grant her the ability to speak English because it would be perfect if she speak English. And I would feel that if she just spoke another language as easily as I did, that she could solve all my problems. That's how much I adore her and have, you know, how much I love her, how much emotion I share with my mother. And I think that's what kind of brought me into the realization that I can kind of use my experiences and use what I'm going through to kind of not only help myself, but help somebody else in a similar position. Because I, whenever I see somebody that starting their journey, I see those, that look of, you know, it's just one thing that's missing. It's not even like, you know, that the problem is hard. That's not the problem. The problem is that it's one word, one phrase, one situation, one tiny thing that is missing. And I think that's what hope is. You know, it's just a tiny piece and it kind of, that's what started my journey. That's why I, you know, I accepted, you know, going to therapy and talking about my feelings, even though I'm a little bit conservative and a little bit kind of attached to my own personal beliefs. I realized that sharing that with somebody else, sharing, you know, how vulnerable I can be can help both of us, can help both the person I'm talking to and myself, whether they're helping me or I'm helping them. And I think that's what gave me meaning was that I saw the inequities between somebody that only spoke one language and somebody that spoke more than one and was able to communicate their frustrations and stuff like that. Because I think, I don't think I want to solve that, but I do want to solve this idea that that's only one thing. Because I think if it's only one thing, we can all work together to kind of fix it. Yeah, thanks, Danny. Yeah, so I hear both of you talking about, you know, the kinds of things we're going to be doing with others as well. Let's stay with our own stories for a little bit longer though. If you don't mind, I want to ask you a couple more questions about that. I mean, so both of you referred to losses on one level or another. Can you say a little bit more about the losses of, you know, whether they're social connections or meaningful roles that, you know, that you were going through, the role of family and the role of culture, Danny, you talked about that a little bit as well in this journey of sense-making. How have those losses and social connections, meaningful roles, as well as those experiences with your family affected this process? For me, the early experience of losing friends, I guess I was already sort of different in my own way. That maybe that's related to the fact that I was eventually diagnosed, but just kind of falling out with people, that was difficult. And I don't know, I'm not sure if I can connect the stress that led to having difficult feelings with my mental health. I mean, that's likely. And then with my family, it was kind of hard for me when I was first diagnosed that they had no idea what it was. They had no frame of reference. It was just, you know, we hear what we hear from media and that's all we know. And, you know, they had no idea what to do. And so that was kind of a weight on me to see them go through that. And so I don't know, that kind of thing made things worse. Yeah, now were you going through a similar challenge or did you feel like you already understood what was happening to you and they just didn't catch up or were you and your family going through this complicated interpretation of your experience? Well, we were going through it differently because to me, I had everything figured out, which now I definitely know I didn't. I thought my thinking was perfect. I thought I was right on and everybody else were the ones that had the problems. So my parents were going through it like just totally confused. And I was going through it thinking I knew what was what. So it was a different experience for each of us. Got it. Now, Danny, I don't want to ask you or feel like you have to talk about your trauma but it sounded like you were connecting your traumatic experience with your journey as well. I mean, so how did your traumatic experience inform your sense-making and some of the things that were happening around your psychosis? Well, I think I look at it because right now it's a little bit far removed to who I am now as a person. I don't think it's completely healed but I am very different. I would have a different response to that situation. But to me, I do remember one thing vividly and it is that I did become very religious while I was going through the traumatic experience. And that to me, it wasn't bad but it was very much another flag, another kind of warning system to me that I wasn't religious before and not as I didn't believe, but more as I wasn't always looking for a specific reason to do something. But back then I was. So like everything had purpose, every sound, every conversation, every look, every not look, every breath, it had a meaning, it had a purpose. And as time went on, when I had more ability to kind of reflect on what was going on in my experiences, I kind of finally allowed myself to see my parents and my family less as their roles and more as who they were as people. I was able to tell people that I was mad. I didn't do that before. I would keep all my emotions, all my thoughts to myself. And like I said, I'm an introvert. So that's very easy for me. But slowly as I was progressing through all the kind of tools that you use in order to kind of combat, all the thoughts that you don't want to be able to concentrate, to meditate. I learned that I kind of, how do I put this? I kind of wanted to be more in contact with the people that express their emotions. Like I wanted to be part of the birthday parties. Like birthday parties became meaningful to me. Like I actually look forward to them. I make more contact. I care more about what people are saying and how they say it and what their dreams are. And I think before I used to believe it used to be like a power dynamic, of if you give me two pieces of information, I give you two pieces back or I give you one and now you owe me one and stuff like that. And I think as I not only grow older, but also I go through my experiences, I now am more willing to not share more, but be more open to the idea of sharing, be open to the idea of looking as to my mother or my father as individuals of a certain age that have gone through certain experiences and have certain problems that are different than mine. But we both shared this common theme of wanting to help each other. And I think that's kind of like what helped me. But in the beginning, it was nothing at all like that. It was more of, they don't understand me. And it was very hard for me to picture a world where they could because I tried to put everything in what I believe would be its perfect place. So, my mother was doing this because she wanted me to do this. And the reason I won't do this is because I shouldn't be doing what she wants or I should be doing what I want. And it was always a tug of war kind of thing. Yeah, thanks Danny. Wow, this is great. So let's move to the next slide where we can talk about some of the kinds of things that supported us as well as how we're supporting others and each other in this journey of sense-making. And I think the notion that there ought to be some process for how we support each other in the sense-making process is really awesome to me. I mean, I'm just excited about that we're articulating that. I mean, it's just the three of us. There's so many more people to do this with, right? I mean, just as three cisgendered men, it's kind of a very narrow way of looking at things. And even within ourselves, the intersectional realities here that contribute to the water and how we grow and how we experience ourselves is something that I think we ought to be. And hopefully this conference and these types of presentations will be more of a factor, right? And more of a presence in this process. So let's start there though. I mean, so for us, we've been doing a number of things. You talked about some of the things that were helpful to you. Let's articulate them a little bit more explicitly now. Let me go to Patrick. What were the things that moved you forward on that journey in your opinion? For me, it was the culture. I felt like I had this foundation that helped me make sense of things, define things. Believe in things. Really the power behind the culture of the kids I hung out with led me through believing in my personal rights and choosing to express myself the way I wanted to. It didn't always work in my favor, but ultimately those were the things that mattered. So, and I kind of think of culture as we wrote here, discovering culture as the antidote that culture can address the whole psychosis idea that, for example, the Hearing Voices Network culture says that if I hear voices, it doesn't have to be that there's something wrong with me, things like that. And I also think that culture can change the restricting viewpoints of the world that, you know, by celebrating who we are and celebrating diversity, that there's always a change happening that we recreate the world around us. Wow, that's great. Thanks, Patrick. Danny, how about you? To me, I think, to put it in like concrete terms, I think it was the ability to kind of share kind of like what I went through, but also at that time, my current thoughts, you know, kind of going through the motion of putting words to like, I felt angry yesterday, and the reason why I felt angry was this, and I'm trying meditation, and it's not working, or it is working. I tried to draw one time, I tried to journal it, I tried to talk to somebody about it. I remember the first time I told somebody that wasn't my family member about my experience, my traumatic experience, I got nothing by support. So I was one of the lucky ones, you know, I was one of the lucky people that, you know, I'm batting 100 right now. And I don't know much about sports, but I have 100% record with two people that I've told, and they've supported me, and you know, they're still close to me. And I have nothing but positive feedback when I share kind of like my experience. But I am aware of the world of people that don't have that. And I think that to me, became more apparent, the more, you know, the more nervous, I became, you know, I haven't shared it with a third person. But you know, and I don't think I'm destined to fail, but I'm very much aware that the words I use and what I share is will also affect, you know, my outlook in life, you know, sometimes, you know, when you start trying to explain so much, you sometimes lose the value of what you have, you know, trying to define it so hard sometimes kind of doesn't diminish it, but it does sometimes, you know, obstruct the real meaning of it. And I think, I think, as I, like I said, as time goes on, I kind of, I kind of am becoming more aware of that. And I kind of want to not only give myself more tools to combat that feeling of stigma, but kind of give other people those tools. And those kinds of like concrete, you know, when you're going to share it with somebody or when even when you're going to do a hobby, you know, we're gonna share about, you know, your love of comic books or something. I think, I think those kinds of ideas, the important part is that you're sharing them, it's not really, you know, what it is, you know, I watch movies on a regular basis, but I don't really care about how good the movie is, I care about, are my friends having fun? You know, where are we going to go eat out later? What are we going to talk about? We're going to talk about the movie, we're going to talk about something else. Are we going to have a memory of that night, you know, that two o'clock in the morning, we're going to get some pizza, it's a dollar pizza, and it's the most amazing pizza we've ever tasted. You know, kind of those, those are the things that keep me going. Those are the things that we reference every time. And, and I think all of us have that, you know, no matter our gender, our experience or in our problems, I think we all have the ability to have an amazing community that supports us and believes in us because we're individuals and, you know, we are free. Wow. Yeah, that's great. You know, yeah, I mean, I feel like for me, there's so many different parts of the process. So first, it was my outrage at what was how I was being perceived by people in the community. A lot of times, you know, I got connected to a peer support community, which made a big difference for me, I, you know, as a another group of teens, that, you know, a father, actually, my father ran into another father at a church, and he just was, I was in the hospital. And he's, he goes to this man and says, you know, took a risk himself, he normally wouldn't tell other people what was happening. But he said, Look, I don't know what to do. My son's in the hospital, he's on drugs, he's in the streets, he's, you know, he doesn't trust us. He, you know, you know, and he just tried to kill himself, you know, I don't know what's what to do. And this father, other father said me to his son was also going through a similar thing. Just just recently to that he had just taken a leave of absence from his work to help renovate this old horse barn that was across from a high school. And then the parents and you know, some young people, they've renovated it, threw some couches in it and a pool table and a ping pong table and gave it to the kids to work, work it out, like to actually be a teen center for themselves. And he said, Maybe your son will go there. And so that's where my father took me. It was the first place he took me out of the hospital was that place. And I met, actually, it's funny you say punk rock, Patrick, I met some, some people who are like the exact opposite to me, they were punk rockers. I had long hair, I was, you know, I got introduced to punk rock by them. And I started to like some of it. But I, I didn't think I would connect with with these young people. Because I thought no one could relate to me. No one would, you know, my guard would, I didn't think my guard would ever drop, but it wanted to drop so badly that the first kind word out of this one young man's mouth, you know, today, why don't you come over here and play some pool? You know, just I walked over like a magnet to him, you know, and I just remember feeling so surprised as I was walking over. And I know my father was too, he couldn't believe it. And then I was there evenings, weekends, every day after school, I wasn't even in school yet at that point. But you know, they were all coming in and out after school. And it was just, it became a community for me where I could discover myself a little bit more. And then from there, people would tell me about, you know, peer support meetings they were doing or going to and somebody asked me to run one at another facility at a children's unit. So I was, I couldn't believe they were asking me to do something like that at 16 years old, you know. And so I went and tried it and I did a good job. And I thought, oh, well, maybe, like you were saying, maybe this is something I can do, you know, maybe I can, maybe I have something to offer the world, you know. I was good with dogs. I hated, I didn't like interacting with people much. So I did some animal control kind of, you know, at the local shelter. I did some volunteering and started to feel better about myself that way. I started to discover spirituality. My father supported that. I mean, I think you mentioning, Danny, your parents' support for you, and I think, Patrick, you've referred to that too. That was a big factor for me, even though I didn't trust my parents. We struggled with trusting each other a great deal, but the desire to be a collective unit, to be a family in one way or another, I didn't know how it was going to happen. The fact that they supported me, even decisions that I, I mean, I quit school. I didn't go to the treatment programs they wanted me to go to. I didn't go to the therapist they want. I didn't go to the churches they wanted me to go. You know, so it just was a constant conflict, but it meant so much that they were hanging in there, you know, that they didn't stop asking for me, you know, and stop visiting me or wherever I was, you know. Anyway, so there's a lot more to say about this. I wanted to ask you both, and we have a good amount of time here. So I wanted to ask, you know, we've talked about rewriting our narratives or, you know, and especially rethinking our illness narratives. You know, Patrick, you talked about the Hearing Voices Network helping you shift how you saw even your experiences of hearing voices. That was my experience too. Were there other ways in which you rewrote your story around what you were going through and how you're perceiving what you were going through? Well, the Hearing Voices Network didn't really come into play until later in my life. I think I still found a voice before that. I had this belief that my thoughts were still relevant, even though a lot of people dismissed them. I would have conversations with people that had not necessarily the same experience, but were outside of the box thinkers, and they would still listen to what I had to say, even if sometimes they're like, that's too far out. So that was important, having people I could talk to, and I really didn't want to discount my way of thinking. I didn't want to just be done with it. Although, as time went on, I got this idea in my head that, because I was in recovery eventually, when I was in recovery, I thought, well, if I'm in recovery, it means I don't have symptoms anymore, so all that is over. I had been in situations where I was on a court order, and I was always having this threat of being hospitalized hanging over my head, so I was afraid of that. So I convinced myself that I didn't have any of those experiences anymore, but then when I did hear about Hearing Voices Network, and they said, you can still hear voices and be in recovery. It's not always a bad thing. I was like, actually, I do hear voices, and I have been. I just didn't think I was, because I was hiding it for myself, and I just think how helpful this information would have been sooner if I wasn't... Because if I'm... When I was struggling with all that, for me to acknowledge that there was something wrong would have been so overwhelming that I didn't want to have a diagnosis. But if I had known I can have these experiences and still be a normal person, still be part of society, it's not even an issue, then that was a whole different story. Yeah, that's intense. Thanks. How about you, Danny? Yeah, for me, I think the one time I actually understood what was going on with me was a little bit down the line in my journey. I got more comfortable sharing as time went on, but I do remember in the beginning, most of my family is supportive, but it was very hard to explain to them, especially at that time, what was going on with me. And I tried very different ways, analogies, or how I was feeling at that moment, how I'm going to feel tomorrow, uncertainty as time goes on, reactions to certain news and stuff like that. But I think the one thing that did help me was my dad, my father. So my parents are divorced, but in that moment, my mom found my father while I was in trouble and bought a ticket and brought him over to visit me. And one of the things that always impressed me was that I never got the sense that he wasn't on my side. His help was very pure. And from that moment on, most of my peer work, most of who I am as a peer mentor or specialist or what have you, is modeled after him. This idea that my job is not to always agree with somebody, but to give this sense that we're on the same team. And we're on the same team, not because not only I want you to succeed, but there is a little bit of myself in you, because we're both human. We're both people going through this, not the same experience, but the same planet. We both have our ups and downs. We have our heartbreaks, our joyous occasions. And I think it's important to not feel isolated. And I think that's what helped me. And besides that, my family in general imprinted a little bit in me the sense of responsibility. Being responsible for myself, I think, was very helpful. Because in the beginning, I would have a chaperone. My grandfather would take me with my friend's house, so my father would tag along, and we would go to the movies together with my friends and stuff like that. But that dissolved away. Those were training wheels. But later on, they were like, okay, you have to go to the doctor X amount of times. Every week, make all the appointments. You have to wake up, make your bed, take a shower, brush your teeth. And even those little tiny responsibilities that sometimes, even now, I take for granted, those all help build responsibility in myself. And I started taking care of myself, starting caring about, like I said, being more open and expressive. So both of those things would be the kind of things that helped me rewrite my mental health narrative. Wow. That's powerful. Both of you are reminding me of so many stories that I personally can relate to as well, whether it was the role of... I mean, my father followed me around in a car for a while. I remember my family would be like, is that your dad behind us? I'm like, oh my gosh, it is. I can't believe this. So there were just times where... And I had to reinterpret that at some point as support, one way or another. It was his way of doing it. And it was awful feeling to feel like I wasn't trusted still on one level. But at the same time, even one of those friends said to me, I was like, well, at least he cares enough to see what you're up to. So this taking personal responsibility for where we are, taking it to another level, whether it's living on our own or... We're bringing that into OnTrack and Navigate. We're all part of Coordinated Specialty Care models here. What's one of the things that you're doing in the model of Coordinated Specialty Care to help young people with their sense making or on their journey of recovery at this point? What would you say are some of the things that you prioritize? I enjoy working with families. My experience with my family was that they didn't know what was going on with me. They couldn't help me. I was resistant to help. And they just went on to sort of work on what I call their recovery. So they got involved with NAMI. They started trying to help other families and help them with their kids, help them help their kids. And eventually that caught on. I was interested like, what is this recovery you're talking about? And I kind of ventured into finding out more, which led me down my path. So working with families, I think, can be helpful. Encouraging them to be involved, to believe that things can turn out. Another experience I had in my family was when I felt like I was dragging them down. And that was worse than the feeling I was already having, feeling like I was dragging them down. And when they finally kind of let go, that allowed me to feel like, okay, now I'm on my own. Now I can figure it out. I can do the next thing for myself. So like sharing those experiences with families in the context of someone with lived experience, I think is one thing that can be helpful. That's great. Thanks, Patrick. Danny? For me, it's kind of the kind of work I do is I'm very happy with the way we run groups. I think the dream of my team and most of the people is to have a community that is apart from my job. I kind of want to walk into a conversation and I want them to support each other because I think that's a good stepping stone on going on with your life. Because like I said, it's very hard to find somebody that does it all by themselves. I don't think it's impossible, but I just think it's just so hard to find because there's strength in numbers. There's strength in saying, I am not good at X, Y, Z. I am not good at talking to people. I don't like singing or I don't like scheduling myself in a certain mode and stuff like that. And I think having a culture, a community, a society kind of helps you understand certain things better and also helps you discuss things. One day, eventually, you want to have a certain job or profession or a hobby or something that you really want to do and somebody might have that one thing that you're missing. Like I said, they might have if you want to meditate, somebody might have the perfect words for you to understand what it is and what's about and how you can go at it and what works, what doesn't. And I think that's what we try to do. Well, what I try to do and what I want to get is that I want to have everybody that sees me and talks to me, this understanding that I want them to be able to what they're telling me to be able to tell not a total stranger, but somebody else and to build upon that and to bring more people in. And some of it is going to hurt. Some of it are going to be rejected and some are just they're not going to be understood. But I think if you practice at it and if you go at it with an open mind, you're going to bring more people in and you're going to and also if you ask for help, if you want to say like, I want to start a group together and I want to start a rock band together. And I think I want to give the person that's asking that question as many tools as possible to start that because everything else can build from that. You can rent someplace in order to bring all your friends together to play music. You can have a record label or stuff like that or play a night at a club and have a gig that you do once a week and stuff like that. It doesn't have to be exactly this way, but you can have a purpose in your life that can span a couple of months, a couple of weeks or even years and that can have a profound and healthy effect on your life. Wow, that's powerful. Both of you have said so many important things. I mean, I think when we think about what just using our own coordinated specialty care models of OnTrackNY and Navigate, the focus on school and being able to stay in school or get back to school or work or have meaningful relationships, that hopefulness, I mean, I personally bring this up because I don't think for me and my family that was what was offered. We weren't offered that vision. It was more of like, just be happy he's not trying to kill himself or anyone else. I know he's going to be in this program for a long time. I'm not sure when he's going to go back to school. You know, they didn't have the answers that said, no, actually, your son can do better and he will do better. And these are the kinds of things we know can make a difference in his life and reconnecting him with those goals of his and that vision for himself and that understanding of who he is will make a difference. Culture, your culture is an antidote for his recovery. That was validated by Patrick, not invalidated as it was in my experience, you know, where my culture was a barrier to my recovery as far as the treatment program that I was kind of caught up in at the time was concerned. There was no rethinking of an illness narrative or whatever it is that society was telling us about ourselves. That was what they said, you know. So we had to be advocates. I mean, so for me, advocacy community and, you know, I've heard Patrick, you talking about that too, and Danny as well, just was a part of our experience of elevating a change, right, in what we were going through, and I know it was for me. So some of these aspects, honoring multiple worldviews, whether it's the Hearing Voices Network or even OnTrack New York and Navigate, really not pushing a worldview onto somebody, but really helping people examine what their worldviews are and what their explanatory models are, and ultimately honoring the fact that people can be seen and heard for who they are, in and of itself can be a way to move forward. So I'm gonna, if you don't mind, stick around for a little bit longer, I wanna get some of these other thoughts around our next slide forward as well. Patrick, you talked about the Hearing Voices Network. So for those of you who haven't checked it out, please check that out. But these are some important freedoms that we refer to, whether it's interpreting our experiences in any way, not just an illness framework, but it's certainly not anti-illness framework either. So I just wanna emphasize that so that those of you who might be worried about that know that actually many people who come to Hearing Voices Network, understand and take medications and have a variety of different ways in which they proceed in their recovery. The idea is that you can be free to accept and understand other ways and other all kinds of ways in which you might wanna move about in the world. Let's keep going though to one more slide on recovery. This definition of recovery was developed by those of us in mental health and addiction recovery when SAMHSA was predicting kind of a healthcare reform environment where we would need to better explain the concept of recovery to healthcare, right? And that mental health and addiction had separate recovery definitions. So they threw us in a room, I was actually one of the people, for two to three days, and we came up with this definition and a few other principles that supported it. Recovery is a process of change through which individuals improve their health and wellbeing, live a self-directed life and strive to achieve their full potential. I think I wanted to ask you and Danny and Patrick about your reflections about this. A recovery orientation is a key factor in the model that's in the models that we work in and supporting early psychosis. Can you say a little bit around what pops out at you around this and what you find yourself emphasizing with people about it? Go ahead. Do you want me to go ahead? Go ahead, go ahead, yeah. Yeah, for me, I think I use a little bit about kind of what was told to me, which is I really like to highlight kind of the progress that people make and what they have actually have accomplished, no matter how big or small it is. Because I think a lot of people think that once you get done with the little things, you can move on to the big things, but sometimes doing the little things, you're actually tackling the big picture, the big goals, buying a house, having a family, being happy throughout life and stuff like that. It can start with very small responsibilities. It could be even signing up to a class. That could be just enough just to push you closer to the step of where you want to go. And also kind of always trying to, for now, the stage I'm at is highlighting how aware you are of your surroundings. Who is supporting you? Who has been there since day one? Who got convinced to help you? Who is attracted to you? Like you said, with magnetism. I have also been attracted to people that are very charismatic and I don't think I'm gonna become forever friends with them, but at that moment, they are singing a song that I have nothing but all the time in the world to listen to. And I think those kinds of ideas and people have to be highlighted and thanked. Those people are very hard to come by because I did have a moment in my life where I didn't think I would ever meet a person like that. I would never meet a person that accepted who I was. I would never meet a person that almost perfectly understood what I was saying. And I think that is very valuable and it should be highlighted. And I think everybody can be that for somebody. Everybody, and like I said, I try to emulate my father and I can only hope whoever takes over my position has the same kind of mentality of, I want to help a person be helping the next person that we can all together cause a chain reaction to help each other. Right on. Thanks, Danny. Patrick? Well, I definitely think about the self-directed life. Sometimes the system is encouraging that and sometimes the system gets in the way of that. So as a peer, just encouraging people that it's all about them. It's about what language they choose to use. It's about personal freedom, advocacy within the system. And I love the full potential part. I always want to know what people's vision statement is. Like if you can achieve anything, what is it? And how do you get one step closer to that today? Those are the things that inspire me about recovery. Wow, that's great. I bet you get some incredible answers. And I wish I had you two to ask me those questions sometimes. Yeah, that's awesome. All right, so let's move to the next slide. There's a couple more things I wanted to think about. And we talked about social determinants of health but I didn't define it for you. And so when we first think about this, and this comes from some of the work that the federal government did at their healthypeople.gov website, you'll see social determinants of health are defined there as the kinds of things, the conditions where we live, learn, work, and play, and even where we're born, right? And the conditions with which we're born affect our lives. And so health starts in those places. So whether it's healthcare access and quality, educational access and quality, social and community context, economic stability, the neighborhoods we live in, the built environments around us. And again, I wanna emphasize healthcare. I mean, Patrick, you said it right then and there when you were just talking about that sometimes even our own services, our systems can get in the way of a self-directed life. So those are factors that need to be understood. Let's move to the next slide just to understand this a little bit further. And also recognizing racism itself as a social determinant of health and that unpacking that with people will be important because it's gonna be in the water essentially, right? It's one of those ways. And we're trying to explore that in OnTrack New York, for example, of how to be an anti-racist model that actually doesn't accept inequities. And we can move to the next slide as well to address this is that the recognition of social determinants and the interaction between social determinants and our health conditions, it isn't just about treating a health condition of an individual. There's an interaction there that needs to be understood. There's a process that people are going through and including those early adverse childhood experiences, for example, as the ACE study might have implied. And those understandings of the trauma that comes from loss and abuse and neglect and household dysfunction or socioeconomic status. These are factors that will impact either existing conditions or even create them. Let's move to one more slide. And so having a process that moves towards health equity and racial equity is both the outcome as well as recognizing that there's a process. So racial equity in and of itself means that two or more racialized groups have that full potential capacity, right? That are experiencing those outcomes on a level playing field. That also means that there needs to be social conditions and processes that everyone is getting a chance to experience. And so for many people, that's gonna be a different experience. So I guess I'm bringing these up to you, Patrick and Danny, and I wanna go to one more slide, Georgina, about this issue is that sometimes people think of equity as equality, which means everybody gets the same thing. And that isn't quite what we meant by equity. What we were talking about is that how do we make it possible for different people with different experiences, maybe even the same diagnoses, right? As we know that there's a great amount of heterogeneity in our experiences, even if we have the same diagnostic condition, how do we ensure that people get that equitable process and outcome, especially from a racial equity perspective? Patrick, Danny, can you both speak to that a little bit in terms of what you do in your work and life to make that possible? Well, the first thing I think of is celebrating people's culture. So one person might tend to have an easier time in the system because it's shaped by the white society. And if someone can celebrate different cultures and understand each different value and where those things come into play with a person's mental health, then there's so much more that can happen. Yeah, definitely. Thank you, Patrick. Danny, how about you? I think for me, especially because I can speak the language of Spanish, is trying to get the resources to have them like try to understand what the program is offering and also what are gonna be the differences because there is gonna be a culture clash, you know? The same word doesn't mean the same thing because society is built different, you know, sadly based on region and also based on, like you said, economic status and also race and racism. And I think highlighting that and trying to offer the best explanation for it, not the exact explanation to me is a little bit key because there are a lot of different values that different people hold even in the same society because there are different outcomes. What my mother wanted for me is different than what my father wanted for me. But they both use the same tool of Spanish. My father spoke a little bit more English but they both came from the same place but it's better to discuss between them in their native language because that's what they can understand and they can discuss and they discussed it with me. My family discussed it with me and I think giving the people the proper tools to tackle the goal like kind of the picture shows is the best way to kind of go about it. Yeah, that's very helpful. I mean, so, I mean, that's deep. Linguistic as an example, you know, just offering the same language in and of itself is not going to be what creates the equity. It's what information you're getting because you're speaking the same language about what matters to each person. It's gonna be different. What mattered to your father, what mattered to your mom and to you are all three different things in order to move forward in your journeys together, right? You're not gonna be able to do that. And Patrick, I mean, just seeing culture as an antidote, as a first priority and as the strength in and of itself is such a beautiful way to just extend into this first step of equity. All right, let's go into the next slide. So here we are talking about culture and how it impacts every aspect of everything we just talked about, the journey of sense-making to how we identify mental health conditions, how we seek help, how we experience our symptoms, how we define recovery, right? How we experience all of these steps in the process. Let's keep going to one more slide. And it shapes, finally, how we explain our health, what concerns us most about it and what matters most to us in our recovery. And of course, that's gonna define then and influence what supports we would find helpful. All three of us can say we've been through the same program, for example, yet different supports within that program were what made a difference in our lives, maybe. Or we could say we've been through a similar process, but each of us found different supports to really make a difference for us in that process. Before I move on, is there anything about these last few slides that either of you wanted to emphasize? I just didn't wanna highlight that. There are also some things that sometimes it's not intentional but sometimes one thing is very anti to what a person wants. So like say, for instance, there are some people that definitely do not want to get a job or definitely don't wanna go back to school. And I think it is sometimes very important to highlight that resistance to it and actually that negation of it. That negation of it. Like there are some people that if ever, they just don't want to integrate themselves with that part of society. And I think having the conversation about it is important because like I said a little earlier in the presentation, if you overlook it, sometimes it'll be very hard to open that door again because the conversation has been had and we have to wait until the next time somebody brings it up. Yeah, that's deep. So, I mean, basically you're saying you have to understand what matters to the person, right? If what you're offering only is because of it, it's what matters to your program or to your service, which is school, work and relationships. And it's not framed in a way that actually someone would receive as mattering to them. Of course, they're not gonna say yes to something that isn't about them, right? I think what I heard you say, Danny, though, that is that if you miss that opportunity to really explore that with someone from a place of curiosity and understanding, you may not get that back for a while again, right? Because they're gonna shut that down as you just trying to convince them of something. Is that what you were trying to get at there? Yeah, just because, I mean, I think we all have the same. When I started learning about all this, I always had questions, but some of those questions are gonna be lost just because certain answers were given to me and that kind of shut off an avenue. I have a diagnosis, I've had medication and the experience of not having medication to me is technically closed off. It's not that I'll never not be on medication, but the experience of not being on medication for like five years or six years or trying various different types of medication, none of them working and having a negative experience, that whole section of life, it's kind of closed off for me for the time being until the next time when I have the discussion with my therapist or one day I decide just to deny all kinds of therapeutic and medical help. Interesting, yeah, so this is very helpful. And I think this is where I'd like to land with some final remarks from each of us about this journey of sensemaking, the culture. I mean, we've talked about the title of this presentation was the culture of mental illness. We're talking about the culture of our journeys in many ways and how culture itself was an antidote. I'm gonna keep resonating with that, Patrick, as you've brought that in. What are some final recommendations or thoughts that you wanna offer as part of this presentation? Closing remarks. Well, I'll start while you're thinking about it and unless you had something you want. Patrick, did you have something on your mind? Ready, okay. So, I mean, I'll just say that I'm so grateful for those of you who are listening and paying attention to this presentation. For me, starting with the recognition of people, those of us who have experienced hearing voices, seeing things that other people don't hear, sensing things that other people don't hear, sensing things that other people don't sense, this acknowledgement of multiple worldviews of psychosis and explanatory models was so important to my family in our journey because as we've already said, many of us, each of us in our family had a different way of interpreting what was happening. And we needed to be able to have our journey honored and experienced and I needed a process where my journey was really empowered from an autonomy perspective, from a sense of belonging perspective and from a sense of like competence. I needed to be able to feel like I could do things and had a contribution to the world and a sense of purpose. All of that was just, I felt like a fish out of water. I had no idea how I was gonna have that. I felt like all of that slipped away from me for a period of time. And to feel like pieces of that were coming back slowly and what was really coming back was me discovering how I could be in the world and start to be free to be me in the world was how I started to feel healthy. So discovering that meant standing with me, not necessarily telling me what I was going through or telling me what was wrong with me or telling me what happened to me, but really asking and really staying with me. And so I wanna thank all of you who've stayed with me and Patrick, especially you and Danny as well. So back to you. You made me think, Chacku, about how we influence the world. So we have our experience, we have our struggle and we also have our way of thinking that can impact the world around us. There was a guy telling me once that there's businesses that actually seek out people with similar diagnosis to us because they're wanting someone who thinks differently. And given that and things we've survived and sometimes a deep level of compassion, I just think there's a lot we have to impact the world with. Wow, that's awesome. Thanks, Patrick. Okay, Danny. Yeah, I definitely kind of wanna highlight this idea that conversations like we had just now happen all the time. And especially for the job, like as a peer, I like when they happen earlier, just because it gets the ideas flowing and hopefully kind of illuminates kind of like the pathway of what a good peer is. But also as a person, the dream for me is that all these conversations lay a foundation for conversation like this to happen, non-peer role oriented, a conversation between a father and a son, father and daughter, parent and child, a teacher and student, all these things, a friend and a friend, all these things are important because I always very much try to emphasize that there are voices out there that are silent. And sometimes it's because they've had a bad experience and they don't wanna touch that bad experience again, that they're derailed. But sometimes it's because they haven't had that opportunity to speak up. And I think hopefully this gives somebody a good framework of what a good conversation looks like. So thank you for having me. All right, well said. And so for those of you who are looking for ways in which to have a journey of sensemaking be a part of your treatment process, please go forward and try that out, start sharing it with each other. We look forward to hearing from you about that. Maybe we'll have a presentation this time next year about your experiences in that process. I would like to see, for example, people contribute or see the journey of sensemaking just as much a part of the disrupting that duration of untreated psychosis, like they would medication or any other aspect of coordinated specialty care. It is just as essential to that process to really engage what matters to us and what we would find helpful. So great work. Thanks everybody. And I think we'll end here. Thank you, Patrick and Danny. Thank you.

Culture of Mental Illness

Sensemaking of Psychosis

Recovery

Danny Sosa

Patrick Hoffman

Chacku Mathai

Open communication

Stigma surrounding mental illness

Social determinants of health

Racism and discrimination

Anti-racism mechanisms in psychiatric care

Cultural identity