An Emotional Response to the Hearing Voices Network: Anti-Medication ? (ep 46)

Guest:Freddie de Boer

On May 17th, the NY Times Magazine published an article by Daniel Bergner, based on his book The Mind and the Moon. 

The article reports on psychosis , from the point of view of Caroline, who is beset by the hallucinations of psychosis. 

Daniel Bergner explores how to seek a deeper engagement with ourselves and one another—and how to find a better path toward caring for our minds.

Or - does he leave out a huge piece of the picture?

So many comments about the article, which seemed biased toward the Hearing Voices Network. One such response, from Freddie deBoer, has generated over 7,000 YouTube views so far.

Links:

NYTimes article:

https://www.nytimes.com/2022/05/17/magazine/antipsychotic-medications-mental-health.html

Freddie deBoer’s response:

https://youtu.be/yKB6F_VYuZY

https://freddiedeboer.substack.com/p/my-response-to-daniel-bergners-new?s=r

Want us to cover a topic? comment to share?

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Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, “Happier Made Simple”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_01 0:01

Welcome to our podcast, Schizophrenia, Three Moms in the Trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. And welcome to this kind of spontaneous episode 46 of Schizophrenia Three Moms in the Trenches. And this came out of a conversation Mindy and Mimi and I were having after we all saw a New York Times magazine article that was published. It was by David Berkner, who's a journalist, and it's based on his book, The Mind and the Moon. And basically, the article subtitle is A New Movement, which we know as the Hearing Voices Movement, wants to shift mainstream thinking away from medication and toward greater acceptance. And the article reports on a point of view of psychosis through the eyes of a woman named Caroline who has hallucinations and has engaged with the Hearing Voices movement and now refers to them as non-consensus realities. And the concept is that by lifting the pressure of secrecy and diminishing that feeling of deviance, talking about the voices can loosen their hold and make us less isolated, which I'm all for. But underneath all that, it seemed to us that there was, and always has seemed to me with hearing voices movement, that there's a feeling that medication should be stopped. And I don't know if that's true or not, but we all immediately saw an incredible YouTube video by Freddie, who, if you're watching on YouTube, you can see right now. And I'm gonna hand it over to Mimi because you you did the contacting. So okay.

SPEAKER_03 1:54

Well, first, Freddie, how do you pronounce your last name?

SPEAKER_00 1:57

Uh Debor.

SPEAKER_03 1:58

Debore, that's what I'm talking about. Okay, so this is Freddie Debore. Hi, Freddie. Um, you know, this is something that we all have talked about and thought about, and when that article came out, I just looked at it inside and shut my computer because it's just like it's it's so um distressing to see. And um I've wanted to talk about it, and so have my partners, but we have a little bit of difficulty with that because you know, there's this whole nothing for us without us movement, and um, and also, you know, we're three moms, we're not three people experiencing this, and so what we get is oh yeah, you're just the moms, you just want to control everything, you just want you know, there not to be a problem, so you're medicating them, and so we lose a certain amount of credibility. Now, that really, you know, it's certainly not our intent, the three of us, and I've yet to meet a mother whom that's her intent, but it makes it a little tricky, tricky to talk about, and um I think it's important because I think these kind of articles in the movement, the hearing voices movement is doing a terrible disservice to the vast majority of people who are dealing with psychosis disorders. You know, um I I look at their approach and their attitude toward it, and it's like, God bless them, if they can go through this and have auditory hallucinations and psychosis and just deal with it without medication. And we do know people who do that. So, you know, more power to them.

SPEAKER_01 3:39

Yeah, yay.

SPEAKER_03 3:41

Yeah, but again, I mean, our friend David um um David Israelian, who's on the show, he has serious voices and he has learned to deal with it, and he's amazing, but he's the first person to stand up and speak for medication. So, anyway, here you are, and we'd like to hear we, you know, we saw this video that really moved all of us, and I've seen it passed around on social media now. And so here you are, Freddie. Can you tell us a little bit about yourself and what brought you to make that video?

SPEAKER_00 4:14

Yeah, um, I'm uh 40 years old, I'm a writer. Um, I have a PhD uh in applied linguistics. Um when I was 20, I had a psychotic uh episode uh and I uh was diagnosed with bipolar mania. I was taken to an ER where I was uh strapped to a gurney and injected with Haldol. I ended up in a uh psychiatric facility for um a long period, uh, which is where I was diagnosed. Um I emerged from there with some prescriptions and follow-up appointments, um, and I lasted less than three months on meds. Uh, and the the sort of following 15 years was a period of a very consistent cycle of um being okay because I have a cyclical disorder, and so there would be periods of time in which I was not ill, um uh and would be which would make it very easy to convince myself I could live without medication. Um, I would gradually become manic, that would lead to um very dangerous and uh unpredictable behaviors. I had very um common patterns of accusing people who were close to me of disloyalty, of becoming extremely paranoid about people um hacking into my bank account or putting things in my food, um, which would eventually lead to legal scenarios in which I would basically have to go back onto medication. Um and when I would go back on medication, the meds would come with a series of problems, but I would become stable uh and then I would go off meds again. Um and that happened, like I said, for 15 years. And um I should say that all this is very common for people with uh managing uh bipolar disorder. It's this is not at all an unusual scenario. And then finally, when uh in 90 in 2017, when I was 36 or so, um, I again the same cycle happened. I ended up threatening um to kill someone uh in a voicemail, which shows you what a criminal genius I was at that point. Um and uh they said um, you know, if you go to the hospital, I still might call the cops, but if you don't go to the hospital, I'll definitely call the cops. And so I went to the hospital, and just for whatever reason, this was the one where it was just like I just, you know, it had become clear that um if I was going to have anything like a normal life, I had to be medicated for good. And I have been medicated now for five years. Um and so yeah, so that's my story. And um, yeah, so I I am someone who, you know, um is well, well aware of all the downsides of the medication. Um, but um, when I am off meds, I ruin my life, and when I'm on meds, I don't. And uh that is, I think, a simple wisdom that seems never to be included in these pieces, which I just feel like some version of this story gets published like every nine months or something. Like it just it just seems like this is a story that the the mainstream media is so desperate to tell without any balance of talking to people like me who um need medication and have had their lives saved by medication.

SPEAKER_01 7:25

Wow. And and I will tell you that just, you know, today, if you're listening, whenever you're listening, today is Sunday in the middle of Memorial Day weekend. And my son, who I call Ben in the book, so I'll might call him Ben for the purposes of this podcast. He is also 40 and his diagnosis is schizophrenia. And just had a bit of a setback because when his life isn't going the way he would like, he turns to pot. And then if he could, he's living in a group home where medication is a requirement, um, but it's by injection. So every month we live with the possibility that he'll say no to the injection. But um he's downstairs right now playing with his nieces and nephews and actually agreed to have his injection three days early and in the car, and he had a job interview also this week. Oh, wow, wonderful, man. I know it's amazing. And yet, when he said, Look, I'm I'm on the meds, and I'll tell you, mom, I don't need them, but I need them to stay in my group home and I need them to see you. So we are never gonna agree that I have an illness, and we are never gonna agree that I have medication that I need medication, but I'll do it for you. And part of me was a little bit like, well, just like, can you just think about every time you go off them, you go in the hospital? And he started to get angry and fine, and you know, and I had to go back to one of my mantras, which is like, it's not my job to convince him he has schizophrenia. It's good enough for me if he takes the meds from me. That's you know, that has to be okay. And so, of course, there's a part of me, and if you're new to our podcast, we are three moms. We each have sons with schizophrenia. We've stood by them, we support them, we advocate for them, we also set boundaries so we take care of ourselves, and we've each written books about it, not as moneymakers, but as hope spreaders. And um, so I know that there's a part of me that says, Oh, I wish he would listen to this podcast. And I know you have bipolar, which is more cyclical, but you have dealt with psychosis and you came to this conclusion. And so that's the frame of mind I'm in today. And I want your YouTube video, which I will put a link to in the show notes, was so emotional. You just turned on your camera and started talking. And can you tell me about the process of seeing that article and what compelled you to turn on your camera and just make this video, which is probably has at least 6,000 views so far?

SPEAKER_00 10:03

Something like that. Um, yeah, I uh I just find it um look, like there are people who have problems with blood pressure who don't have to take statins, right? There's people who are able to manage heart disease with um uh diet and exercise or whatever, and good for them, right? Like I, you know, that's that's great. Um there are people who are able to manage psychotic disorders without medication, and I'm happy for them. Um, what bothers me is that, first of all, this article and articles of this type never attempt to say what percentage of people suffering in this way can actually manage it that way, right? Um it, you know, so like think about like the concept of like living with the voices. To be able to live with the voices means that the part of your brain that can comprehend that you are hearing voices and that they are delusions has to be working normally. In other words, your your disorder can't uh obscure the fact that, in fact, there are no voices being heard, that those are the product of a mental illness. Some people, like the people interviewed in this article, have the ability to do that, where their schizophrenia does not obstruct their conscious mind's ability to understand that the voices are not real. But of course, for many, many people with schizophrenia, that is precisely what their disorder does not allow them to do, right? They can't grasp that the voices aren't real because that that is what their brain is telling them is the truth, right? I mean, you know, one of the tragedies of these psychotic disorders. Um, you know, I have a very paranoia-dominant mania. So I'm it's kind of similar to that, in the sense that, like, the part of you that um is not being believed by the public at large, the doctors you're talking to, whatever, the delusional part of you, right, is the part you want to protect because that's the part your brain is telling you is the higher truth, right? Right. They're out to obscure my reality or whatever. And so a patient who doesn't have the ability to actually separate, okay, some things I hear are real and some are not, is not going to be able to live with the voices in a meaningful sense. I also think that it's um uh unfair and irresponsible to not talk about the fact that um as I understand it, just about half of the people who have schizophrenia or diagnosed with schizophrenia have what they call like negative symptom schizophrenia, meaning that they are extremely withdrawn, they gradually lose engagement with the world, they become nonverbal, they sometimes become catatonic, right? Um, people like that are as big of a picture of schizophrenia as are a violent, paranoid, delusional schizophrenic, just in terms of the population. But what would it mean for those people to live with the voices when the way that their disorder represents itself is they gradually just remove themselves from the world, right? Them just sort of accepting, you know, they are perceived by many people to not be a problem because they're not violent, they're not threats to other people, but their disorder is still severely restricting their ability to live a happy and healthy life.

SPEAKER_03 13:24

And those are the invisible people, and there are so many people with schizophrenia who are like that, and that that it's such a tragedy because um you hit the nail on the head when you said they're they're not a problem to society, and this is sort of how treatment for schizophrenia is driven, is let's just eliminate the part of it that is a problem for the world we don't want to look at or deal with, and it's perfectly okay within the the approach for treatment to call a success a person who is medicated to the point of being in a stupor, to being almost catatonic, and that's a success. And all three of us has half had our sons handed back to us as zombies and said, here we fixed them. And that's not good enough for us, and that's such a huge majority or a huge proportion of the people with schizophrenia, and there's nobody out there speaking for them.

SPEAKER_00 14:25

I mean, and I really appreciate it. Go ahead. Sorry.

SPEAKER_04 14:28

I was gonna say, I really appreciated your video because I felt like you were speaking for them, even though you have bipolar disorder. My son, who's 44, so he's uh just a few years older than you, has schizoaffective disorder bipolar type. So he very much has your illness plus schizophrenia. So we have the cycles and also um some of the other uh voices or or um issues, including voices, but I felt like you were speaking for him. And that video that Mimi sent to us, your your YouTube was just got me so emotional too, because I was so happy that you were speaking out. As Randy said at the beginning, we're three moms, you know. So it your voice is so much more powerful. So I'm pleased that you do it. And a regular podcast, am I right? Did I notice that when I was looking at your YouTube, or is that a regular YouTube?

SPEAKER_00 15:23

So I have a newsletter and I occasionally post videos. Um, it's there's no rhyme and reason to like what I sort of think is video worthy with this. I just was just so I just I was so emotional. I just wanted to get it on there. I I want to say real quick though, and I think this is important, um, this idea of that the only people who can speak on a subject are the people who themselves, you know, have so the only people who can speak on schizophrenia are people with schizophrenia, that sort of idea. Number one, I think that that is, you know, that sometimes is called standpoint theory in academia. And I think that that's just a very debatable notion in general, right? Because like the idea that the best people to speak on a subject are the people who are most implicated seems directly wrong in certain circumstances, right? Because um, if you look at, for example, battered wives are notoriously have a difficult time recognizing their reality as battered wives because they are in it, right? So I wouldn't want battered wives to be the only voices, right? So that's one thing. But the other thing is that you guys are speaking from a point of being in it. You are speaking of your lived experiences as the parents of people with schizophrenia. And that is just as valid and just as important to the conversation for every one schizophrenic person. There's a whole constellation of family members who have to live with that person and manage their problem, right? Um, you know, my commitment to treatment, if it was just about me, if I was truly alone in the world, there's no doubt in my mind that I would remain unmedicated and I'd be in and out of institutions and I'd be unemployed, right? The thing that compelled me to finally get my act together and to really stick with medication was my family. And, you know, my my younger brother had to come down, had to come up to New York from Washington, DC and go to an institution, you know, and negotiate with my insurance company. And, you know, I'm just I'm there, I'm like, I'm 36 years old, and my younger brother has to come rescue me again. And it was that that sort of compelled me to get back into treatment for good. And so the notion that like the family members of people with schizophrenia have less inherent ability to speak is just not correct, right? Because they're bearing the brunt as much as the person themselves are.

SPEAKER_04 17:40

So thank you. Yeah, thank you for that. Powerful, just like your video.

unknown 17:46

Thanks.

SPEAKER_04 17:46

Um, one thing I wanted to you mentioned, you know, we're talking about the journalists, and um my my daughter is is actually a journalist, and so believe you me, I'm gonna be discussing this with her this weekend. I'm gonna see her for where I'm going to Washington, D.C. for my granddaughter's high school graduation. And so I'll be discussing this. But I think there are, you know, obviously some really tuned-in um editors and journalists on this topic, and I think she is definitely one of them. I have to say, I was shocked that the New York Times magazine would publish such a one-sided piece that they did not take the time to talk to anyone from other major mental health groups, other people like you, who are very articulate on the other side. I mean, the person, the woman, this was a Caroline, you said, Randy, um, she did not have any of the appearances of the sort of illness that you were talking about, Freddie and Mimi, with the other half of people with schizophrenia, who may not be violent or doing anything else, but they're living marginal lives, or really, one might say, not much of a life at all. And if they were having active um delusions, when my son is in that state, he's terrified, he's miserable, he wants to die. So the idea that he people like him weren't represented in that article by the New York Times, I thought was abhorrent and shocking.

SPEAKER_03 19:22

Freddie, did you get reaction from your from the video? And what was it like?

SPEAKER_00 19:27

Yeah, I got a lot of positive reaction. Um, I heard from a number of patients themselves who don't feel represented in, you know. I mean, I um I I think one part of this is there's nothing sexy about saying, go to your psychiatrist, do your therapy, and take your meds, right? That's not counterintuitive. It's not, it's it's not groundbreaking, it's not going to sound interesting or exciting to anybody. And the media loves narratives that are counterintuitive and that are different, right? Um, but like, you know, if anyone asks me their their advice for handling a psychotic disorder, go to your psychiatrist, do your therapy, take your meds, right? But I mean, that's all you can do. Um, but I heard from a lot of people who said, like, look, like, you know, number one, that they were like me, were in and out of treatment for a long time. And the what held them back for a long time was their perception when they were psychotic, that you know, their psychosis was some sort of like a deeper, more meaningful, more real way to live, right? That like the enemy of treatment for them was the perception that you know it was a bet being unmedicated is a better way to be. And here you have the New York Times telling people, oh, this is this is the real you when you're not medicated, which is so irresponsible, I can't even believe it.

SPEAKER_01 20:49

I know. And have you heard from the oh, when you're done, I want to know if you heard from the Times at all.

SPEAKER_00 20:54

Um, I heard I got an email from Daniel Bertner, which uh was private, and so I won't share it, but he did reach out. Um, but I heard from just a ton of people who said, you know, my younger brother struggled for 15 years and then killed himself. And when he was medicated, it was okay, and when he wasn't, it wasn't okay. Or my dad uh, you know, struggled with schizo-affective disorder until he died in a drunk driving accident. And we just always wanted him to take his meds, and we begged him to take his meds, and he wouldn't, and then that's why he died, right? Like there's just all these um these narratives from people who um have borne the brunt of people's decisions on how to take medication. Um, you know, I did my dissertation on uh educational testing, um, and I write out a lot about education, education policy. My first book was a lot about education policy. And um in that world, I often talk about the concept of like selection bias, which is um things can look good because of the kind of students that go into those programs. Than the programs themselves. So a really common thing that will happen is you know, there'll be like in a month Montessori school in town, and a bunch of parents will send their kids to Montessori and they'll have a great uh outcome, and they'll really the students will will flourish and everyone will feel good about it. And then you have a parent whose kid keeps struggling and just can't get it together. They say, Well, I've heard so much, so many good things about this Montessori school. I'm going to send him there, and then he doesn't do well, right? Because the kids who went to the school were a big part of this of this successful success solution. It's the exact same thing with this, right? Like I have no doubt that hearing voices is helping some people and I am happy for them, right? But I also have no doubt that I myself have been in institutions with people where I would be very, very frightened if they were put into a context in which they were constantly being told that they just have to learn to live with their psychosis. And for the record, one thing that I will note um I have had a psychotic disorder for 20 years. I've never heard voices. I think you know it's hearing voices for some people is very literal and real in the sense that they literally hear it. But there's a lot of psychotic psychotic patients, both uh schizophrenic and bipolar, for whom hearing voices is a uh like a metaphor, right? Right. Um I'm I no one is whispering into my ear that my ex-girlfriend is putting glass in my food when I'm when I'm psychotic, right? It's just something I believe for no reason. I and I do think like um I tell people often like don't go too hard, don't fixate too much on hearing voices, as like in terms of actual auditory hallucinations, because that is not the how it works for everybody, right? Like there are schizophrenic patients who have delusions, right? But it is not the product of like literally they hear a voice. And I sometimes I think that it gets over-emphasized in a way that might alienate people. Uh groups, yeah. So I I do um uh National Alliance of Mental Illness um support group every week, uh, online support group on Zoom. Um uh they uh my my girlfriend is involved with them as a volunteer, and uh you know, they provide a lot of free uh opportunities for people to um do support groups, which uh are very valuable for me, uh, but you know, directing people to treatment, helping people to sort of find doctors, things like that. So, you know, I'm I'm a fan of like recognizing medical problems as medical problems. Um I I mentioned in a piece recently that uh what we used to say was, you know, you wouldn't stigmatize someone with diabetes. So why would you stigmatize someone with uh schizophrenia or bipolar disorder, right? Um that I feel like that basic wisdom of that has kind of been lost for some reason. But um, these are medical disorders, and so they should be treated by doctors with the advances of medical science, right? And so people who, and I guess this is another thing for me. It's like I if people find that they are deriving real benefit from the model that's presented by groups like Hearing Voices, then that's fine by me. As long as they're getting the support, I don't care. But for me personally, I think there's a weird sort of philosophical element to this that I just don't vibe with. I have a problem that's a medical problem, and I want it to be treated by doctors and taken seriously as a medical problem, rather than seeing it as some sort of broader philosophy of life issue uh to discuss. And uh and again, I think so. You know, what I got a couple of emails from people like sort of talking about their time in 12 step programs, like Alcoholics Anonymous in that world, and how much they were helped and how their lives were saved by those programs. And one of the things that was mentioned several times is that um the core to the 12-step philosophy is not that everything about you is fine, right? It's that they don't say, oh, your alcoholic self is your true self. They don't say, oh, everything with you is fine, and so you shouldn't feel stigma. They say you have a problem and you need to change your life, right? And you need to surrender to the fact that you have this problem and you need to do the work to change. And so um obviously there's differences between mental illnesses and and addictions, but I do think that like there's this strange insistence that anything that we as part of our identity is something that we have to uh recognize as like, oh, it's part of me, so it's beautiful. And I don't feel that way at all about my bipolar disorder. I don't see anything beautiful about it. It has come very close to ruining my life on many occasions. And uh I just don't I just don't believe in the philosophy that it's something I should see as beautiful.

SPEAKER_03 26:52

You know, your analogy seminar with um um Ellen Sachs. Are you familiar with her? Yeah, with Ellen and um this woman named Esme Wang, who wrote the collected uh schizophrenia, it came out a couple of years ago, and she's also has schizophrenia. And somebody from the Hearing Voices movement raised their hand and you know, presented this whole thing about it being special and wonderful, and they're superheroes and it's a beautiful thing, and she doesn't understand why everybody's trying to change it. And both Ellen, who's my age, she's in it, she's 66, and um, you know, she's been dealing with this for a good half a century, and Esme, who's young, both said, you know what, if I could hand back schizophrenia and not have it, of course I would do that. There's nothing beautiful about this. And um I just found that interesting that they were so unequivocal about it. This woman was presenting it as though it was a way, I mean, it's very much in the zeitgeist, it's very much in our culture. Love yourself and love everything about you, and you're okay, and everything's fine. And I think that we have to remember that everything isn't fine. I mean, when you have stage four cancer, there's nothing to love about that.

SPEAKER_01 28:09

There's a wonderful there, there's there's so much in what you're saying, and I keep muting my microphone because outside is my son playing with his nieces and nephew, and it's very loud and beautiful. To me, that's beautiful, and yes, that's my perception. My son's staying up all night because he talked to a bush and God gave him the secret of life that may have felt beautiful to him and his psychosis. But in terms of getting along in the real world, I don't even think he wants to live his life that way. He is trying to get a job in a toy store right now, and you know, so it's um, and he has a shot at it. So we'll we'll see. But when you say there's there's no stigma with with diabetes, I think there is an element of society that says that doesn't understand type one um diabetes versus type two, and you know, it says we'll cure it with diet and exercise, or even with cancer, the people that are like, well, I think you attracted that with your energy. So there's always this element of society that wants to go there, maybe because they want everything to be okay. But anyway, enough about us. Um just back to we want to continue to let you tell your story. And I know that in your YouTube, you and I are both from Connecticut. So hello. Um uh you you mentioned about something that happened when uh somebody you knew or witnessed was let out of the hospital too soon. And do you want to say a little bit about that? Or should I just lead people to your YouTube video?

SPEAKER_00 29:40

I mean, you can watch the YouTube video. I, you know, um one of the one of the narratives that is almost impossible to avoid is the idea that um uh we have this problem where the mental health system keeps grabbing people and pulling it into it and they can't get out. And the doctors always want to keep people in, and you know, they still, you know, everyone is over is over institutionalized. Um, I think that that that narrative is not correct. Um, certainly I think it can be the case that individual people can find themselves in places where they don't have advocates and where they are being uh where their rights are being trampled on. Of course, individuals can have it happen to them, but in general, mental health is like any other part of healthcare, which is we have a problem with inadequate access, right? I mean, I I you know, I I I think this is a a little a little tidbit that I offer to people all the time. Um you still you can be forced into a psychiatric hospital and still have to pay for it, right? I think that a lot of people don't understand this. Um, you can have insurance and you can be involuntarily committed to a psychiatric institution, and the insurance company company can still decide that that is not covered, right? And this is there, there are many documented cases of this happening. So people will go in, the judge will say they have to go in or whoever, uh, and they will be in for a couple weeks and they'll come out with a $30,000 bill, and the insurance company will say, Nope, sorry, we're not paying for that, right? Um, it's hard to get treatment. Getting into therapy is a real pain in the neck. Okay. So um I can tell you, I look, I live in New York City, where there's probably more uh therapists per capita than anywhere, right? But um it is such a pain to get into therapy because um you have to find people on your insurance, um, you have to find people on your insurance or even after the insurance payment, the the copay is not too high because I've been quoted $150 a session on top of insurance. You have to find people who are accepting new patients, you have to find people who are accepting new patients who can uh have a schedule that works for you. So back when I had a nine to five job, um, I uh was told I, you know, I went into to try to get into therapy. And after going through the whole process in a rigmarole, they're like, okay, your appointment is every Monday from 1.30 to 2.30 p.m. And I said, I have a job. I, you know, it's an hour for me to get here and an hour to go back. I can't just disappear from my job for three hours every Monday. And they said, we can't help you. Um, but the other thing is, um, many therapists will just decline to take patients with psychotic uh conditions. I know because I've that's happened to me many times. I will go, I will do the intake appointment, they'll charge my insurance, obviously. And then they'll say, Oh, we think you need to find someone who better fits your needs.

SPEAKER_04 32:28

Because they're the easy people that go through hear the hearing voices movement.

SPEAKER_00 32:32

Right. And look, I I, you know, I understand that if a therapist feels, oh, I I don't want to have I'm not equipped to treat a psychotic patient, I get it, but it's hard, right? It's hard to find treatment. And so the idea that, like, um, the problem is that everybody is over-treated is simply not the case. You know, I have a friend who used to be a social worker in San Diego, and she spent so much of her time trying to find homeless people who had serious mental illnesses treatment and was just stonewalled over and over again in terms of finding them treatment. Yeah. So then so the specific story for me is that um when I was quite young, um, so I'm from Middletown, Connecticut, where Connecticut Valley Hospital is, and that is the only major psychiatric uh state state psychiatric facility in the state. Um, most of the other ones are devoted to addiction uh treatment, and that has the big maximum security uh uh for violent patients wings still to this day. But when I was eight, um a patient got uh somehow accidentally let off the ward, uh, who had twice before stabbed people due to his uh schizophrenic uh psychotic illusions. And he was released. Uh he wandered down to uh Main Street, uh and we were having our annual sidewalk sale, which was this big community festival, and he stabbed a little girl to death in front of hundreds of people. And um, you know, uh there's a lot of stories if you if you dig around about people who were clearly not ready to go back into the real world, but there was no one to pay their freight. And again, like, you know, I think many people don't understand, you know. So the last major law that John F. Kennedy signed into law was the big omnibus mental health bill. And it was the start of the uh institutionalization. And the critique was that, you know, we have these institutions and they're awful, and people get thrown into them and they're there for their whole lives, and nobody takes care of the people. Um, and there were definitely many things wrong back in those days with those institutions. So, what they did is they closed a bunch of the institutions, and the idea was they were going to open uh a bunch of community mental health centers. And basically what happened was they closed the institutions and never opened community mental health centers.

SPEAKER_02 34:46

Right.

SPEAKER_00 34:47

So people got a ton of people basically got shifted from the institutions to the street or from the institutions to the prisons, right? Um, and uh if you talk to people, many people just sort of assume they'll say, Oh, go get help, right? Oh, you you have a site, you have a mental illness, go get help, right? And they think there is some place where you can just arrive and say, I have a mental illness, help me out, and they'll just take you in and pay your way, right? But um, because you know, most facilities, even there are even state facilities which are still charging you for the record. But and anyway, you know, a lot of the state institutions were closed down. And so now you have private uh uh mental health institutions where someone has to pay that freight, someone has to pay that bill. And if you don't have insurance, if you don't get prior authorization from your insurance company, which you almost certainly haven't if you're having a psychotic episode, then you can end up with just um life-ruining medical debt because you have a psychotic disorder. So I just think that the narrative of over-treatment is just not real, frankly.

SPEAKER_01 35:52

You make you make so many good points, and we have just about five minutes left. So I want to make sure that you have the floor and you get to say you have this platform, we've got over 40,000 listeners, and so we just want to give you a chance to are there any more messages we haven't asked you about? Anything else you would like to say to our listeners, many of whom are family members of people with serious mental illness, but we also have a fair amount of listeners who have serious mental illness. So this is your soapbox, this is your platform. What else would you like to, what other messages would you like to get out there?

SPEAKER_00 36:29

Yeah, I saw a few things. The first thing is that a majority of people who are uh prescribed antipsychotic medication eventually improve and recover to the point in which they no longer have to take their antipsychotic medication. I've been on uh antipsychotics now for five straight years, and before that was I was on and off and on for a long time. Maybe someday in my future there's a time when I don't have to be. And there are people like me who are on them forever, uh, well, for a long time. But um, a majority of people go off their go off the medication when they it's appropriate for them to do so. A majority of people who suffer from mental illness uh in this country receive appropriate treatment and go on to live perfectly healthy, normal lives, just the same as somebody who breaks their leg, gets treatment, and then moves on. Okay. There will always be chronic patients, and there's and mental illness is tends to be uh something that reoccurs uh throughout life for many people, but many, many people go and they have periods of mental illness in which they are treated and they recover. And that's that's success in medical science. And that that those people are another example of a population that's just not adequately talked about in the media, where people get the appropriate treatment and then they recover. That's how it's supposed to work, right? And so you need to understand that going in to get medical mental health care is not uh consigning yourself to a life defined as a mentally ill patient. The other thing is that um, you know, I would say to everybody who is potentially struggling in this way, um, you don't have to be clever. Like you don't have to find a way to beat the system. You don't have to find some special way that you're gonna you're gonna navigate it and you're gonna prove everybody wrong. Okay. Part of my problem was that I was always convinced that I was smarter than the doctors, that I was clever enough to figure out how to handle the disorder on my own, that I was too special to do the normal thing. And it ended up being after 15 years of not getting it together, what I needed to do was to work the program that was being put in front of me.

SPEAKER_04 38:37

I'm smiling because that sounds so familiar with what goes on in our house.

SPEAKER_00 38:41

Yeah. If if I had been uh more receptive and open to the idea that I'm just like everybody else with a mental illness, and if I had just done what the doctors had told me to do 20 years ago, I would have saved myself and my family and people around me a lot of heartache. And the thing that I think these younger people don't understand, I mean, there's so many young people now who want to identify with their mental illness and they plaster it all over their dating profile, and they, you know, they think that it makes them so interesting. You you there are things you can't take back, you know. And the the thing that um I know as a 40-year-old man that I didn't know was a 20-year-old is that um you lose people uh for good. And the thing is, is like looking back at my behavior, it was correct for the people who cut me out of their lives to do so because I was unstable and I was dangerous. And you can't get those people back. You can never take that back. So my advice to everyone is don't be clever and don't think that you're too smart for the system, and don't think that you can somehow rise above all this because you're so interesting. Work the program, right? Go to your psychiatrist, do your therapy, and take your meds. That's my advice to everyone.

SPEAKER_01 39:54

Freddie, thank you so much and for sharing your story with us today. We really appreciate it. Would is there um anything you've written that you'd like us to point people toward, or just I'll I'll put we'll put the link, obviously, to your videos on there. Um anything else?

SPEAKER_00 40:10

Yeah, just so my my Substack is my newsletter is FreddieDebor.substack.com. If you Google my name, it's the first thing that pops up. And I've been writing a lot about mental illness lately. Um and just trying to sort of um present you know an alternate point of view uh that maybe isn't getting as much uh uh audience as it needs from the mainstream media. So uh feel free to check that out.

SPEAKER_01 40:32

Thank you.

SPEAKER_04 40:32

And check it out and it gives you a chance. Other people should too. You've got a lot of really good topics.

SPEAKER_00 40:38

Thanks so much, guys.

SPEAKER_01 40:39

Thank you so much. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com