Sandy Allen -- A Kind of Mirraculas Paradise
Hi everyone. This is Dr. Carson welcome to living. Regret free a program that shows you how to live a better and more joyful life as an added bonus. I invite you to listen to an introduction to my mindset matters program which ties into this sub. Well, go to WWW dot SOB mindset dot com. It's free and I know you will enjoy it if you'd like to contact me personally, drop me a line at Gail Carson thirteen at g mail dot com or go to my website, WWW dot spunky old, broad dot com and sign up for my weekly newsletter. My guest today is fantasy Allen, and I have the opportunity this month of dealing with authors from the Miami International book fair. So we're interviewing sandy who is the author of a kind of miraculously paradise and that's spelled m. i. r. r. a. c. u. l. a. s. so I'll have to find out about that from sandy, but she translates her uncle's autobiography by artfully creating a gripping coming of age story while sticking faithfully to the facts as he shared them. She also shares background information on her family to culturally explosive time and place of her uncle's formative years. And the vitally important questions surrounding schizophrenia and mental healthcare in America more broadly. So welcome to our show sandy. Thank you so much for having me. Oh, you're so welcome. I do have to ask you. I what is the significance of spelling? Miraculous? And my r. a. c. u. l. a. s. yet, it's a good question. It's often the first question. Why is the title misspelled? And it's one of those things where when you read the book, it'll quickly become evident but briefly. So my story is based closely on my late uncle autobiography that he wrote when he was a hermit who lived in his home in the desert in northern California and the young person he had been come in had grown up in Berkeley in the sixties, and he was hospitalized according to him at about age, sixteen and subsequently diagnosed with schizophrenia and then went on to live his life. And by the time I was alive, he was a hermit. So I knew very little about what his life actually entailed until one day about approaching ten years ago. Actually, he mailed me his sixty page life story that he had typed on his typewriter in all capital letters, punctuated. Mostly would Coghlan's no paragraphs. So these just walls of text and the pages where yellowed and they smoke like cigarettes and his spellings were often inventive or unique. And so my book tells Bob story faithfully to his facts. I tried to really give his account of his life a very full. Literary presentation. Honestly, kinda reads like a novel, you're, you're reading this coming of age story from his point of view as he's entering the mental health healthcare system and his really focuses on his kind of ten years between that. I, I had no city sixteen and into his mid twenties, really focusing on his life as he's trying to live inside his mind with inside the mental healthcare system was inside the society at large, especially given the diagnosis. He's now received schizophrenic, paranoid, schizophrenic. And so my book and a second font tells the story. I just told you about receiving the document and and so forth. And it's also the space, whereas you looted I'm exploring kind of the greater context in which Bob lived. And so when I'm telling the part of the book that's Bob story, I'm doing it in a font that kind of looks like a typewriter. And occasionally I interrupt my, but I call my cover version of his story in part because he was a rock musician, interrupt my cover version with all capitals. Meaning I'm quoting directly from Bob and sometimes interrupting you know, to use a little phrase that he typed because I really liked the way he spelled it, and I didn't really want to let go of the kind of uniqueness the poetry or the comedy, or honestly, the sometimes he types something that was really offensive and so I didn't wanna have to kind of take it on myself, but I kind of let Bob's original stand in the all caps. So the title of the book is a quote from Bob kind of miraculous paradise. It's actually his line is kind of Rocco's paradise and he's describing this, you know, would happen every summer when. He was a kid where his family would have driven from California all the way to Minnesota where his parents were originally from, and he would arrive at the lake house where all of his extended family would be in his best friend who was his cousin, and he would have the whole summer before him. And you describe that feeling the miraculous paradise of arising at the lake and summer. So that's what the title is referring to. But I think it's an example of the title of the whole is sort of Bob's line, but it's kind of my little twist on it. And I think that's a good representation of the book as a whole. It's kind of authored by Bob and it has his unique, you know, touch, but I'm old timidly. The person whose name is on the cover, and I'm the person who's carrying the project into the greater world. Well, you know, it is it's an interesting format for a book and it. It kind of keeps the reader on track because they can tell what the differences they can tell where you are and where he is and so forth. I was kind of interested in. Knowing the difference with the diagnosis of then with the diagnosis and treatment now of how he handled all of that and how the family handled all of that because you said it was the sixties, correct? Yeah, he knows according to him, he was about sixteen so that would make it like nineteen seventy. So okay. Yeah, but there's so much. There's so much change in how people are treated now and some of the the medication, some of the controls. And I think in the seventies the word even in the eighties and of course today it's the same. But I mean more so in the seventies and the eighties, the word schizophrenia was is very, very frightening. Yeah, I think that that you know the the full title is. Book and this was in large part. You know, my publisher was interested that the book have a subtitle, that kind of gives people that are clueless to what it was about. What we landed on was a true story about schizophrenia. A true story is a quote from Bob, and that's what he typed on the cover of his book. This is the true story of a boy coming of age in Berkeley, California who is unable to identify with reality and therefore labeled as I caught it, paranoid schizophrenic for the rest of his life. And so I, I sort of my task as bringing readers into a conversation around the status of this diagnosis. 'cause I think my main observation was well I, there was the experience of just reading Bob's life. I really didn't know anything about this guy. I had a sense of this person, but what did it come from? You know, it came from impressions that I had when I was little when I did interact with him a little bit more phone calls that we've received from him. Mostly, it came from what other people sort of said to me, but often very kind of quiet way he's crazy or and I don't really remember whether I knew schizophrenic was the word for what he, you know, been totally was, you know. When I was younger before I got his his manuscript. But once I had it, I read his story eventually I saw his life as he had seen himself, and there was something that began to happen inside of me, which is I wanted to better understand. Okay. So what was this label that he was given? You know, what does it mean? And that sent me on this many years, long research process, which eventually became more of a reporting process where I was really trying to understand. Yeah. What did this diagnosis mean in nineteen seventy? What was the Saudis of, you know, the treatment? How did the treatment he received reflect that time, but then I became more and more interested, especially, you know, in the last few years that I was working on the project because they worked on it for about eight years. Total before published, I really became interested in has the situation changed and how is what Bob experienced in nineteen seventy different than what happens to someone who's given this diagnosis today and how is. What we as a society that you know what we have on offer for someone in the position of receiving the side notice? Is it in fact better or worse than what happened to pob and just understanding kind of wear his story fit into the bigger picture? I would say in general, what happened to him and what happens to a lot of people now is kind of under the same paradigm. You know, there's a paradigm that's been in power. You know, in our society in terms of the psychiatric culture, which I think influences the larger culture which is diagnose and treat, and I think seeks to you, referred to controls. I do think there's a a system that is rooted in public safety, and there's, you know, there's a large series of very loud debates if you tune into them about the nature of those medications about what they do to people's bodies and minds long term. And the reason that I was aware of these debates was because my uncle Bob was certainly telling his life story in order to weigh in on a lot of these questions, you know, he was. He was seeking to show what had happened to him. During that first hospitalization, for example, which I think was a really traumatic experience unto itself. So he was talking about his experiences and psychiatric care. He was weighing in about, you know, he tipped. He took psychiatric medication, you know, stuff, stuff like first generation antipsychotic can generation. Psychotics atypical anti psychotics, lithium, etc. Pretty much you know, on and off. But for the most part, he took medication from about age sixteen through to win. He died at age sixty. And so a big thrust of his book was critiquing the experiences he's had. And so I had to then as his, you know, sometime biographer. But honestly, as a journalist, I was just very interested to understand like is Bob critiquing kind of does science support what he's saying? Or does science support the other side or where you know, where should the general public, which the general public here about the nature of these debates. And that's one of the topics that hopefully the book itself you know is is helping us at least see the debate, you know? 'cause I noticed that before Bob semi historians his life, I didn't know anything about this. You know, I didn't care what crazy men I didn't. You know, I might see someone who's. Homeless and seems crazy. I might pass that person on the street and try not to see him like a lot of Americans are accustomed to doing. But other than that level of interaction portrayals of, you know, craziness I might see on TV or in the news, I really didn't know much about these topics. And so Bob by sending me his story, I think prompted me to begin to better understand what I realized was, oh, there is this really intense debate kind of at the highest level about whether this paradigm is the one or in the last few years. You know, drifted in direction as it continued to research report, and I've been really specifically interested in what could the next paradigm be if the one that we've been isn't resulting in very good outcomes for a lot of people, what are better ways that we can deal with people like Bob who clearly struggle. But it's interesting in the book itself. One of the things that I'm looking at is it's very hard to pin down what exactly was going on before that first hospitalizations, you know specific to him, it's very pin. It's. It's difficult to pin down some of these. These very basic questions. So what you see in historians, how nonetheless, once he gets that diagnosis, once he's in the system that really becomes his life. And I think that by the time he wrote his story, he really considered himself a very self sufficient person, and he was an intelligent person. I think he was pretty angry about what had happened to him. And so I was trying to figure out how to kind of take that spirit to check facts and to then talk to the general public in a way that was actually listening to someone who was schizophrenic. You know what? What happens if we do that and when you say that he was unhappy with what had happened to him, what's that the schizophrenia, or was that the way schizophrenia was handled? I would say it's the ladder. You know, I would say that a lot of what he was writing about was really focused on, I think, situations in which he was in in psychiatric care where he was. Receiving involuntary psychiatric psychiatric care. You know if that was an injection of even if that was being confined in a cell, I think situations where he was being made to stay on medication, so he didn't wanna be on those kinds of things. And these are issues that a lot of people who maybe have a severe mental illness diagnosis in their lives are in their media families, or they do a job that interacts with people with severe mental illness. These are familiar issues, right? This is one of the big questions is whether involuntary psychiatric care is even care. You know, can it be care if it's involuntary? There's many activists who feel no, that that absolately can't be care, and then there's people mental health professionals, signatures who feel. Absolutely, yes. The state and a family. We need to have the power to treat people who might be presenting a danger to themselves or others. These are these, are these these sorts of debates that I think I don't know. I just was tuned out of this conversation before Bob sort of prompted me to to begin to look into it. And then over time I've begun to realize these are really big questions, I think, and they have. Checked all. And one of the basic reasons they affect us all is that they're ultimately isn't a lot that is understood about the nature of a diagnosis like schizophrenia biologically. And if anything, the genetic, you know the rise of genetic analysis in the eighties. You know, there would have been this moment there where if there was going to be some big revelation, you know, there hasn't been. Ultimately, these diagnoses are descriptive, and there's a lot of people who feel well does diagnosis of this sort actually helped the patient long-term, especially as you alluded to at the top a word like schizophrenic is itself very stigmatized. So there's been research that shows that people thinking they are schizophrenic, makes them feel more pessimistic about themselves because of preconceived ideas of what that diagnosis means. So is this word helping? I think that's one of the big questions that I'm looking at in the book. I don't think there's a simple answer 'cause this word is part of our culture. It's part of our medical poacher. It's something that doctors are telling people they have, you know. So. You know, a lot of people are married to schizophrenics and when the medication does keep it under control, they achieve very great things and they do have a happy marriage and when they do go off their medication, that's when problems start. So there are always two sides to every story. But I'm curious to hear how you believe he came to live as a hermit in the desert. Well. I want to. One thing which is I, I wanna be glad allow individual stories to be told him be heard because I think a lot of different people have a lot of different points of view on these topics. You know, medication and so on. And as you allude, a lot of people have people in their lives who've received. I like this. There are people who who choose who feel who, who decide to stay on medication and Bob did Bob took medication how he became a hermit. And this story is told in the book, but eventually he hit a point where he, he, he bounces through the course of the story. He bounces between so many living situations and so many jobs, and he's in hostels and he's in prison, and he's, he's not in prison. He's in jail and he's in, you know, he's, he's, he's living on the street. He's all sorts of stuff. He's in the air force. He's older. He's a street preacher. He's adopted by aliens for several days whole shebang. Bob lives a life, but it starts to really. Becomes clear that he's it's being hard. It's become harder and harder for him and eventually makes decision to go into. Ability, which means that he can't work. And as I write in the story, his father, his family has money. Enough that they buy him a little shack in the desert. And so here's this is the mountain eating moved there. Plan of this house and other expenses, and he lived on his own starting then through to when he died a few years ago. And so he took care of himself. He took care of his dogs. That's interesting because as a young person, he's kicked up fit in a and I do think that's one of these kind of broader points about people who end up with diagnosis like schizophrenia. Even autism often use people who I think are, you know, quote, non normal when it comes to how they relate to others. And that's one of the first things that I can start make a person begin to isolate from others and maybe seek friendship inside or seek an interior world or seek another world to live in. If the one that they're in, for example, is traumatizing, or has you know violence in it or has sexual abuse Senate, you know, very little is understood about schizophrenia, the biological construct. But in terms of people who, for example, here voices because by some estimates, five percent of people hear voices at some point in their lives. But people who have distressing voice here. During one of the only kind of correlations that has been found by researchers looking at what might cause voice hearing is sexual abuse and early childhood. And so there is something there that I think is interesting to think about which is so right now our system, if someone is diagnosed with schizophrenia, they're isolated from the community, maybe they're putting her celebrate himselves and Bob case that's happened. He's putting cell by himself. He's injected with sourcing medication. That's, you know, intended to slow him down, make it harder for him to kind of be in being the world, feel like he's in his own head. And so on hits social connection. Further, he's been putting on an adult ward. So he's a sixteen year old, but he's around these adults who are, you know, a lot of whom have been in the hospital a long time and so on. So all of this, I think, has to be part of our bigger conversation. When we think about this construct of the schizophrenic, you know, because ultimately people don't really exist outside of the experience they receive, they receive a diagnosis like this, which is not to say. Again that he wasn't someone who needed help. But if we listen more to what his experience was, how could that inform or how you know if we listened more people who are in the experience of receiving the diagnosis more, what would happen if we had a system that was actually thinking about how to help people who are being isolated from others. And so often, you know, mental illness and isolation from others and loneliness are really going hand in hand. And this is a, you know, a broader movement kind of away from strict biological approach to mental illness and toward more of a social understanding of mental illness, and therefore what mental health can come from. And I think Bob stories full of lessons about what helped him and what didn't. And one of the very basic ones is he seemed to kind of do better if he had people who were watching out for him. If he had friends, if he had a girl, you know if he had a job, if he has purpose, if he was living somewhere where people were kind of understanding and non judgmental, and he could. Spend a lot of time outside. He did better, and that was one of those things that that I over the years of reading historian just started to kind of feel. But then as they shifted more into reporting and really talking with people out in the world and doing a lot of lot of lot of reading, I saw that, oh, these are big trends. And this is happening internationally that there is a shift toward a paradigm of care that might be more rooted in listening to those with lived experience sh. Well, now he, he died at a fairly young age, right? He died. What at what did you say died at sixty? Which for someone diagnosed with schizophrenia and today in America is about what we would expect. People diagnosed with schizophrenia in America. Today are dying fifteen to twenty five years earlier than people who aren't diagnosed with schizophrenia and people who are diagnosis. Schizophrenia are overwhelmingly maintained on psychiatric medication. Often in combination off and a high doses. Very little research has been done about the effect on term of these kinds of medications on people's bodies. But there's definitely a body of research and there's a lot of activists and journalists. I think the most important journalist here is Bob Whitaker, who wrote a book called Madden America, but you know, they're looking at the correlation between maintenance medication and this declining life span, which is also attributable to a lot of other things right. Right now in our society. If you've got schizophrenia diagnosis, your chances of being in jail or prison, or higher your chances of being homeless or higher your chances of being killed by police are higher. So you've got a population of people's very socially vulnerable and you know, that's one of the things that will to mentally I realized Bob was a lucky person in a lot of senses, you know, not the least of which was he had a family that had the the support, the financial support of, you know, the care that he received as a young person and also the house that he eventually lived in and how that really does change his whole life when he finally has somewhere to go where he can just be himself and in the desert, play guitar and read the bible and, and so on. You know, he was a pretty content person. That was one of the real surprises for me when I first read to the end of story with realizing that he considered his life a success that a lot of people when they hear what my book is about, oh, it's about or. Uncle schizophrenia, how sad? How tragic. I can always tell if someone hasn't read my book if that's what they think, because I don't really think that that is the sense of Bob, how does himself. And I don't think that that's the sense that I'm communicating with my story. I do think that there should be more hope in this conversation right now, there's a lot of hopelessness and I don't think it's warranted medically, even, you know, I think there's a lot of people overseas, especially who feel that the attitude toward people who are diagnosis. Schizophrenia is part of the problem is this sense that, well, if this one route, you know if medication doesn't work for you. Well, then we got nothing. You know, that doesn't really. That doesn't actually respect a lot of the research that has been done about what can help people. And one thing that can help people a lot is stable housing. You know, an example of fairy a very common sense thing that can make a huge difference to someone who's in a position. Like the one that Bob was in, what do you? Why do you think he sent the manuscript to you? Question people ask me that a lot and I don't know. I have guesses. One of my guests is that he wanted help with his writing and that I was the writer the he knew I was entering I was I had just gotten to Iowa and was starting an MFA nonfiction writing. When he sent me his, you know, typewritten original life story. I learned later that he had mailed photocopies of the same manuscript to other relatives before he had sent me the original, which kind of I dunno surprise me. I think one of the reasons I didn't like to to be honest, when I first got the envelope, I was like, what is this? I would have thrown it out, you know it was just so like it smelled off whole. It looked awful. You know, I was just like, I don't wanna get involved with whatever this is, but I didn't throw it out because it seemed like it was an original and. I kind of had this sense that he had taken a lot of time and care in typing it out even if it was riddled with misspellings and so on. It was very clearly unconventional, but it was also very clearly something cared about. So I was kind of intrigued even if I had this reaction of like, I don't wanna hear whatever this is. I don't wanna get into this. You know that way you're trained to just kind of walk down the street passing one. You know, I just I didn't want to get involved. I was really afraid of this. Bob had nasty opinions about others in the family. I did wanna be, you know, a perceived by others seemed to side with him against them or stuff like that. I lived two thousand miles away from my family, like I was very fine with keeping it that way. Don't you don't really interesting. We only have about minute and a half left so that that he could even get photocopies me. I mean that that in itself is amazing because you know, he was out not closed copy places, and so he lived in the desert, but he he could go into town. He will go into. Town when it was early in the morning and do things like grocery shop. So he did not interact with a lot of people. He had his system, but I think you're right that doing something like photocopying and mailing media, regional. For example, these are big tasks for him, and I think one of the reasons doing them with he cared deeply that people hear what his life had really been like. I think it really bothered him that they saw him as schizophrenic and nothing else, and he wanted people to know that he was more than that label and that was his way of trying to, you know, he was trying to get me interested. So I think I would do something exactly like this. One of the things that came up in the course of reporting the story out was other people in the family who knew him better because he talked on the phone with a lot of relatives. They were like, oh yeah, Bob new Bob knew you were going to do this. And I was like, I didn't even know I was going to be this, you know. But I think he has face and he was a very faithful person, and that was the big part of how he got through life and his life was tough one. You know, in a lot of cash. Yeah. Well, for those of you out there who have either known people with schizophrenia or have people in your family with schizophrenia. This is a great read and you should get the book. It's called a kind of miraculous paradise, a true story about schizophrenia, and it's written by Sandra, Allen, and I, I know we don't have much time left, but she will be at the Miami book fair. So look for the schedule. If you are going to be in the area, look for the schedule when Sandra will be there, it should be posted, and thank thank you so much for being with us today. Sandra, thank you so much for having really appreciate thanks for listening and I hope you enjoy today's show. I choose my guests carefully. So if you have someone you'd like me to interview, please drop me a line at Gail Carson thirteen at Jamal dot com. In the meantime, checkout, my Indro program mindset matters at WWW dot SOB mindset dot com. See you next week.