Stopping the Revolving Door - Eric's Powerful AOT Success Story (Ep. 15)

Guest : Eric Smith is a nationally recognized mental health advocate, public speaker, and consultant on matters of severe mental illness (SMI). He is also a graduate of assisted outpatient treatment (AOT). His story has been told in the documentary Stopping the Revolving Door – A Civil Approach to Treating Severe Mental Illness. He has been written about inBedlam, authored by Peabody Award-winning Kenneth Paul Rosenberg, MD.

Court-Ordered Treatment for Serious Mental Illness saves lives and families. Eric Smith tells his story, and why he advocates for AOT (Assisted Outpatient Treatment) 

• Update: Mimi and Nick on ABC news 
• Issue: Miriam Delphin-Rittmon, Biden's nominee for Asst Secretary for Mental Health and Substance Abuse from Connecticut, is not an advocate for AOT. Connecticut is one of three states without AOT.
• Story: A big step - to admit to “wrestling with symptoms”  

And, with our guest,

• What is AOT (Assisted Outpatient Treatmen) and how can it help with SMI (Serious Mental Illness)?

We ask Eric :

• Please tell us a bit about your story and how AOT played into it.
• As mothers, we're happy to see that your parents have participated with you to help educate professionals. If they were here today, what would they say in support of AOT? 
• Did you appreciate their role in you receiving AOT care at the time? If not, how did you heal over time?
• Which people benefit from AOT and why do you include yourself in that group?
• Please describe what AOT services you received? What helped you the most?
• Where do you believe you'd be now if you hadn't benefited from it?
• Do you see any future hope that patient's rights groups will come to see AOT as targeted to just the very severely ill people and that it helps them? Have you received blow back from them?

Quotes:

“I was difficult, I was rude...I was basically “fired” (as a patient) for all the things I needed treatment  for.” - Eric

“The AOT Team recognized that I was being held hostage by my own mind. And they freed me from all of that through a combined effort: psychiatry, social work, a nurse, even an attorney - and a civil court order. ” - Eric Smith

“The most involuntary and coercive and forceful thing I have ever experienced is: my own untreated, undertreated mind”. - Eric

“Fifteen years of failed medication trial and error. Fifteen years of my parents trying to get me the help I needed. Everything had failed.,,AOT is a lifeline, a miracle.”   - Eric

“I was too sick to engage in voluntary care,  and that’s why I’m advocating for something in addition to what you’re advocating for. You’re right...but I’m also right.” - Eric”

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 Kaye. Welcome to episode 15. Tonight we're going to hear a story. Everything's more powerful with stories. In the past, Mindy and Miriam and I have spoken a lot with our guests about assisted outpatient treatment or AOT. But tonight's story is going to really illustrate that and tell us how it helps and why it helps. We're about the problems, we're about the difficulties of having someone in your family with a serious mental illness. We are also about trying to find solutions and working together. So, hi guys, nice to see you both again. First of all, Miriam, I just want to congratulate you. Tell us a bit about that piece on ABC News and what happened. And if people haven't caught it, how they can see it. Yay, yay!

SPEAKER_02 1:09

Well, it was very exciting. They reached out to me. They were doing a piece on mental illness and the police, which is a hot topic right now. And they wanted the piece to include a profile of the family. And they had seen my book or the article in Huffington Post. And so they reached out and I said, Yeah, I'd certainly do it. I didn't know about Nick. You know, I didn't know how he would feel about it, if he would even want to participate or be capable. And it just turned out to be such an incredible experience for our family. Just first of all, he was so forthcoming and open. And again, thank you, Consapine. Um, a year ago, he would probably have not even showed up, but even if he had, he probably would have just sat there blankly staring. Um, the difference in less than a year is staggering. And I think that Trevor Ault, who's an ABC News reporter, did such a spectacular job. You know, he really did his homework, he really seemed to care. He'd read my book, he asked me questions from the book, and um was so warm and good with Nick that Nick was very relaxed and it was just great.

SPEAKER_01 2:24

I saw a bit of it, and we will put the link to this piece in our description. So, and if you're watching on YouTube, we'll pop it on the screen as well. I was amazed that he talked at all about his illness. My son Ben, still deep into anasygnosia, unlike Mindy's son Jim, who does talk about his illness. My son is the holdout boy right now, and boy, just had his 39th birthday. But he doesn't, although we we had a little breakthrough this week, I think. Uh, could have been a manipulation, we don't know. But to see your Nick sit down and actually talk with a reporter about symptoms, we saw a little bit of it. Is there anything he said that didn't make the cut? That's just amazing.

SPEAKER_03 3:08

He talked with him for 40 minutes.

SPEAKER_02 3:12

And just the fact that he talked to him for 40 minutes, and you know, he just was relaxed talking about mental illness. And at one point, Trevor asked him something about is is he close with his parents and does he feel, you know, does he think he is good parents? And he's oh yeah, yeah. And he's he said something about his dad, and then Trevor said something, and he said, Yeah, my mom takes really good care of me. And you know, it Craig and I were sitting here with really with tears streaming down our faces because it just to see him talk about things like that, what a step forward.

SPEAKER_04 3:54

It's amazing. Yeah, I showed it to um to Jim, our son, and um he really related to your son. He really liked him, and um, we thought, if only they were closer, they would seem like young men who would be friends. I have to say, uh, there was one part in the video, Mimi, where you said that your daughter chastised you for saying your son wasn't there, that he was there, he was still there, but it just wasn't who you expected. And Jim agreed with your daughter. He said, Why does she keep saying he's not there? You know, he's there, I'm here, and uh, you don't say I'm not here, do you, mom? So um interesting to remember uh that kind of thing, which I thought was wonderful part of the program. Your honesty, your daughter's honesty, and then your son being in it too, were just magnificent.

SPEAKER_02 4:45

I've been getting mail, email from all over the country since I've written it, and it's the same thing that I get from the book, too, which is it means so much to see a family just being open and talking about it. It makes such a difference for other people, and that's why I I feel so sanguine about what we're doing here, is because that's all part of it and their message, the ABC piece about the police and about what happens. It's very important for those words and that those ideas to get out there too. So I'm very grateful for the way they put together the whole piece.

SPEAKER_01 5:24

Yeah, absolutely. And we will do an episode in the near future on crisis intervention training and and police, and just from the family point of view, because it it's so important. And and I'll just share real quickly before we bring our guest on that so my son Ben is uh has been out of the hospital three months now and had his vaccines, both of them. I'm so excited because he was initially resistant. You never know what his thoughts will tell him about these things. And we were able to actually gather in a park with uh my daughter and her three kids. I haven't seen their uncle in almost a year, and celebrate his birthday, which was which was quite lovely. And I have to say, and if you're listening and you're just at the beginning of this journey, you know, know that it's a long one and there's ups and downs, and there's a revolving door, which we'll talk about in a moment. My son's been hospitalized nine times. Do you guys have a count on your sons? How many times? I'm not sure. Long ago. Lost count. Okay. So, but you know, you can go in and out of the hospital depending on how well the treatment is working, and other it's treatment and structure and purpose and love. So I have to say, Ben is is pretty happy, and and I'm pretty happy with the group home he's in. Uh I miss him on Clauseril, which, if you don't know what that is, that is a a new, newer, atypical antipsychotic that actually works on the negative symptoms, the things that are taken away from you from you by the illness. And um, Ben is on something else, older, and he seems happier. But my daughter said, you know, he's here, and I'm so glad he's here, but the life's not behind his eyes anymore. And so we're gonna work on it. Tomorrow's another day. But the thing I wanted to mention is that, you know, every treatment hits you differently, and we're trying to get Ben's social security disability back. And he said he spoke to his psychiatrist, and for the first time he said to me, Well, what I told the psychiatrist was when I'm not on my meds, I wrestle with symptoms. That's a step. It's a step. He wouldn't, I didn't press, wanted to, didn't press, you know, to ask what the symptoms were. He also said, I shared with the psychiatrist that even on or off my meds, I sometimes have trouble focusing. Now, was he trying to hear? Was he trying to say what he thought Social Security needed to hear? I don't know. Because in the past, he's been like, I don't have a disability, I don't need social security. I'm not sure it was 100% honest, but it's the first time in the 20 years since his diagnosis that I've ever heard him say I wrestle with symptoms. So it was a step. And part of that is the fact that right now he's not in my home. I'm not his nurse, I'm not his social worker, I'm his mother. And I could bake him a key lime pie and celebrate his birthday, which is so much, it's a richer relationship for me. And we don't have AOT here in Connecticut, but he is getting some team care, which I'll take. Mindy, anything to add to this update? Or should we? All right, I'll tell you what. I'm gonna let you uh introduce our guest because you're the one that knows him and brought him in. And Eric, whenever you're ready, you can go ahead and start. There he is, and just unmute. Mindy, go take it.

SPEAKER_04 8:47

All right, thank you, Randy. And I have actually not ever met Eric Smith in person, but I feel like I know him because in this day of COVID and Zoom meetings, I've watched him on and heard him on speaking on webinars and we're on social media. So I feel a great sense of love for him, even never having met him in person and ah, he's a star. We're lucky to have him. And tonight we're talking about assisted outpatient treatment AOT, and he's an expert on that.

SPEAKER_01 9:21

And this is timely because um uh president's an expert, he's a graduate of it.

SPEAKER_04 9:28

Yes, right. He's a lived experienced expert of AOT. Um, but we are especially interested in it because President Biden's recent appointee for the new assistant secretary for mental health and substance abuse comes from Connecticut, one of the three states that Randy's from, as she said, that doesn't have AOT. It's one of the maybe the only state that I know of where the state NAMI president is opposed to AOT compared to the national NAMI that strongly supports AOT. So this is kind of an outlier state, and she has spoken out and was recently reported in uh Pete Early's blog from a couple of years ago that she that she's opposed to AOT. So, you know, we're hoping that she's softening with that now that she's representing the whole country, and we're hoping she'll talk to Eric Smith, who's a star. I could spend a lot of time introducing him, but I will say he is a nationally recognized mental health expert, public speaker, and consultant. His story's been in the documentary Stopping the Revolving Door. He's been written about in Bedlam, that wonderful book that came out recently with by Dr. Ken Rosenberg. And um he's been on NPR, he's been talked to Stanford University, the American Psychiatric Association, and he's also a consultant with the Treatment Advocacy Center, which is a group that I think highly of that because they work on things like AOT. So to begin with, Eric, if you

Eric's Story

SPEAKER_04 11:09

could give us a thumbnail sketch of your life, and we're especially interested in your experience with AOT. And welcome.

SPEAKER_01 11:19

Welcome. And your experience before AOT. So we can set it up as we're trying to give people hope and information here. Go.

SPEAKER_00 11:27

Sure. Thank you so much. Well, first off, I want to thank all of you for giving me an opportunity to be here, uh, to be part of this discussion. I am of the SMI diagnosed population, uh, bipolar disorder to according to doctors who have not seen me while I'm at the state that I am in when hospitalized for psychiatric symptoms. Uh, and for those who have seen me hospitalized with psychiatric symptoms of an inpatient order, that diagnosis is schizoaffective disorder. I don't want to get off on too much of a side story of it, but I recently reconnected with the psychiatrist who saw me in my last two hospitalizations nearly a decade ago. And the way things have unfolded, she's pretty convinced now it's bipolar with psychotic features or bipolar with psychosis. But saw seeing what she saw at that time, uh, she's pretty confident she would have still again said schizoaffective disorder. I bring that up because uh I'm of the understanding that is not uncommon. What mental illness uh looks like at one time may look far more exacerbated or completely different at another time. So that's why I bring that up. So all of y'all listening or watching can understand. Uh, do I have something in common with this person speaking on this podcast right now? And the answer is yes. It's a lot of a lot of gray area that we're doing our best to navigate. That said, prior to being in AOT or assisted outpatient treatment, I had a history of red flags. The types of warning signs that parents and caregivers are told to look for by counselors and educators. My grades took a turn for the worst when I was in middle school. And by the time I reached high school, I was barely passing from one year to the next. I became addicted to drugs, both prescribed and illicit, dropped out of high school in my junior year, got a GED, and then failed out of college in my second semester. All of this was directly related to my serious mental illness diagnosis, which at that time was bipolar disorder. But I had no ability to understand prior to assisted outpatient treatment, that's what was going on. I just couldn't understand I was ill. It wasn't an issue of denial. I was just so ill. And you know, I've never been anyone else in life. I've only been me. And to me, that was what feeling normal was. So I had no idea that I was ill, right? So again, uh, my relationships with my family and friends, those just disintegrated. Delusions, hallucinations, and paranoia, those eventually all became a major part of my life. So much so I was convinced that I was working with the FBI and the CIA. I was positive I had broken codes that gave me information to prevent assassination attempts on world leaders. I remember at the time, I thought then President Obama, I thought he was going to get assassinated. I thought the Queen of Jordan was going to get assassinated, and I thought that that was just going to destabilize the entire world into World War III. And I was convinced that I had broken codes to help me provide information to uh prevent that.

SPEAKER_01 14:27

So you were on no medication or treatment at that time, right?

SPEAKER_00 14:32

That's another long story in and of itself. So I I had I had without getting into that long story, so my then most recent psychiatrist had uh, for lack of a better term, fired me as a patient. And this this isn't to fault that individual, but you know, they didn't like what I was bringing to the table. I was difficult, I was rude, I was uh I was basically fired for all of the things I needed treatment for. But they again, like I, if if I was a psychiatrist, would I have done the same thing? I don't know. I I I'm not that person, but I want to believe that they were operating from a way that they thought they were making the right decision. I I don't want to think that they had any sort of ill intent by getting rid of me as a patient. Um, so yeah, that that's what it happened. So I still had prescriptions from that psychiatrist, but they just weren't working. I mean, you can make a case that they weren't working for a long time, but it really got to a point where it went from not working to uh is this a sugar pill? Because like it, I it may have it may have just may have well been because my symptoms were worse than ever. The fact that, you know, insomnia and increased delusions and hallucinations. I if I I'm not a medical expert, but my brain chemistry just had to be all kinds of changing at that time because I was acting in a way that I had never had in years prior. And um yeah, so I I don't want to get too wrapped up in that point. We can circle back to that if you'd like once we get through all the AOT stuff, but uh it it yeah, it gets murky right around that time.

SPEAKER_01 16:05

So anyhow, but that was your that was your complete reality and as real to you as this conversation is to us right now.

SPEAKER_00 16:14

More real, more real. Because I like I I felt like I was being, you know, blessed with this sense of what you know, was it a was it God, was it a higher power, was it uh something that humanity doesn't understand that I was being blessed with this insight to prevent atrocities in the world, and that that at the time felt so real, but looking back on that, the only thing real about it was it was real insanity, right? So uh that's what that was. So and and it wasn't just that I thought I had that insight, I quite literally once sat awake in I don't want to give the hotel's name, but it's a well-known hotel chain. I I wasn't even a guest there, but I I used their business center for three nights in a row, uh, trying to solve more clues that I could then provide our elected leaders with. So after the third night of this, it it was just about sunrise, and I drove to our local FBI headquarters where they did let me in and uh I delivered a psychotic rant to several of them there. Uh they uh they asked that if I was on psychmeds, they asked if I was seeing a psychiatrist. The answer to that was yes. They suggested that I uh get better help because I I, you know, they didn't believe what I had to say, and why should they? It was all quite crazy, right? Um soon thereafter, I was arrested for the nonviolent offensive trespassing. Uh, that event was a product of my unstable and deteriorated psychiatric state, as we're hearing about it right now. After being jailed for about a month without treatment of any kind, without care of any kind for my mental illness, I was transferred to the San Antonio State Hospital, which is where I was first diagnosed with schizoaffective disorder. From that point on, I had decompensated two more times over a very few short years, each of those times followed by an AOT order, which, as we're listening to this, again is assisted outpatient treatment. My third and final AOT order ended about eight years ago. And since that time, I have renewed relationships with my family and myself. It's thanks to my AOT treatment team and the existence of AOT in my area that I got back on track for a healthy life. And my treatment team, my AOT treatment team, they recognized I was being held hostage by my own mind. And they, through AOT, freed me from all of that through their combined efforts of psychiatry, social work, and a civil court order. Uh, I'm not a legal expert. And for those of you who are listening, uh, to make that clear, that is not a criminal court, this is a civil court order. And it wasn't a judge banging a gavel saying, I know all about medical care and I know all about counseling and social work. No, it was a judge who, through their authority in the existence of AOT in my area, my geographic area, which empowered us like Texas? Yes. So I'm in Bear County, which is the uh county in which San Antonio is located.

SPEAKER_01 19:11

Okay.

SPEAKER_00 19:11

So uh through this civil court order, it give gave the power to a psychiatrist, a social worker, a nurse, even an attorney to make sure my rights aren't being violated. Everyone you would want involved in a complex circumstance, as is serious mental illness, it's more so some uh more so difficult for some than others because things are on a spectrum, right? There's very high functioning bipolar people that may never ever be hospitalized. Uh, I was not one of those, and there are plenty of others who aren't. That's who the AOT is for. When you hear arguments of people saying we just need to invest money into ways people can voluntarily get into treatment because people are happy when they're you know voluntarily seeking it versus not. That's fantastic. If you can get someone voluntarily into treatment and they get it, wonderful. Also, if there's people who don't voluntarily want treatment, but they're high functioning enough that they're not a danger to themselves or others. And I know that's a watered-down phrase, and people, a lot of people hate it, but let me explain it from my perspective. I know that's anecdotal, but it will help you understand. I thought water was poisoned, so I didn't drink it for a long period of time leading up to my hospitalization. I thought all food was poisoned, so the only thing I ate was butter for several days. Um, so yeah, when I'm not drinking the liquid that's required for people to survive, and I'm not eating food, I'm putting myself at serious risk. And the fact that there was a presence of massive hallucinations and delusions and insomnia and paranoia, that quite literally could have translated into danger for others as well. But I was quite literally a danger to myself, not drinking water. Okay, so circling back to um so so this AOT, this civil, this non-criminal order, it's for people like me. Like I was I could have quite literally ended up dead. I didn't want to drink water or eat food. So this social worker, the psychiatrist, the judge is part of the order, the the nurse, everyone was involved to collaborate to get me to a place where I could realize, oh my gosh, the most involuntary thing I've ever experienced in my life isn't this AOT order or the hospitalization, it's the torture that my mind's been able to conjure up at any given moment all the way up to this point. That is the most involuntary and coercive and forceful thing I have ever experienced. My own untreated, undertreated uh mind.

SPEAKER_01 21:35

So wow, that's so powerful.

SPEAKER_00 21:39

Thank you.

SPEAKER_04 21:40

Very much you are so articulate, you express that better than anyone I've ever heard talk about why you needed it and the help that you got. And I think that's why you're why you're a national speaker on this topic. Um, we're all mothers, and I'm interested because we've also tried to help our sons, we actually all have. Sons too. What role did your parents play to help you get AOT or didn't they? Was it more the professionals that did that? And if your parents were involved, how did you feel about that?

SPEAKER_00 22:11

Well, thank you so much for the question. And uh like a lot of parents, they they were involved, but you know, they're grasping for straws to keep them afloat in an ocean with zero flotation devices for people trying to navigate the system that's there or the system that's not there as a better term in some areas, uh, you know, areas without assisted outpatient treatment, and they were involved. So leading up to this arrest that I that I talked about briefly earlier, my parents called my then most recent psychiatrist, that same one who had, quote unquote, for lack of a better term, fired me as a patient and said, Hey, I know he, I know my son isn't your client or patient anymore. Here's what's going on. It's the worst it's ever been. We're really concerned. We don't know who else to call. What can we do? And to that psychiatrist's credit, despite the fact that I was no longer a client or patient of his, said, the way things are in San Antonio in this area right now, your son's best bet is if you can somehow find a way to get him arrested for a low-level offense. So hopefully he might be able to get transferred into a uh state hospital before he's released from jail with time sort for whatever the offense was. That insane advice actually paid off. So I showed up at my parents' house one evening and the police showed up. You know, I was making all kinds of weird claims. The police told me I had to go, and that if I came back, that they would have to arrest me for trespassing. They said, Don't come back here, we'll arrest you for trespassing. I was like, whatever. I worked for the CIA or the FBI. If I come back, like I'm in charge, right? And I'm lucky that didn't unfold in such a way where I'm on the news for all the wrong reasons. But I did come back, and my parents were like, I we gotta call, we gotta call the police. So they said, We're gonna call the cops, the police officers, and I said, Fine, I'm gonna go sit on the porch because when they show up, you know, I'll be like, Hey, like I'm in charge here. If they I'm gonna tell y'all to go, and that's how it's gonna be.

SPEAKER_01 24:10

So they showed up right.

SPEAKER_00 24:12

So, so surprise, surprise, they showed up and did not listen to any orders I had to say at that time, put me in cuffs and arrested me, right? Like home alone face, like big surprise that that's what happened. So, seriously, though, um, I did get taken to jail. And on the I I this sounds like I'm just uh a fan of theatrics by saying this, but this is actually how it happened if you were to talk to my mom and dad. My mom and dad were on the phone with the jail repeatedly while I was there throughout that month. And when my parents knew I was just about to be released, I mean, like day of type stuff. They they asked the jail, what's he supposed to do? You're about to let him go. He's you know, quite seriously a danger to himself. This is the worst he's ever been. And the jail was like, Well, the officers on the phone said, Well, uh, when he gets out, he can panhandle and use that money to buy his meds and cover a bridge. And I don't think we have time to unpack everything wrong with that statement. It's morally wrong. Like, what am I gonna do? I'm gonna walk into a psychiatrist with a bunch of quarters and pennies and dollar bills and say, Hey, I need to see an appointment and get me some meds. I look, and also, secondly, panhandling is not even legal where I live. I can tell you I have seen police officers pick people up who are panhandling and confiscate their money because it's not legal. So that's the advice that my parents were given. But luckily, that didn't become a thing. That philosophy did not prevail. The stars aligned, and by some miracle, if you're an atheist, believe it was just Adams aligning in a wonderful way. If you believe in God or some version of it, believe that's what it was. Because right as I was about to be released, the uh judge did order through a court liaison who had seen me and heard about my case, did order me transferred to the state hospital where I got involuntary inpatient care, which then led to my first outpatient care. So my parents were involved, doing everything they could. And it was a lot of work on their end, a lot of begging on their end, but it was probably more than anything, uh, stars aligning. Because if I were to roll the dice and say that's how it would have to unfold, that's the one way it would unfold in my area where I could get the treatment I needed. I could, you know, you could roll the dice a hundred times and it would never ever unfold like that. So I am very grateful that that's how it did unfold.

SPEAKER_01 26:25

Wow, we've we've all done our share of begging and pleading. I mean, I'm currently begging and pleading with many people, with his psychiatrist to understand his history, with his uh with social security deciders to determine yes, he still does have a disability right now, not able to work. There's a lot of begging and pleading that parents do, and uh we all love it when the stars align.

SPEAKER_04 26:53

My son was really mad at me, Eric. And that's what I wonder if you felt about your uh parents. My son said I ruined his life, and um and he just didn't want anything to do with me. And once he got on good medication and got healthy, then he thanked me and he thought I saved his life. But for that what seemed like a very long time when he was so mad at me, I just was the lowest point I've been in my life. Did you have that kind of anger with your parents? And how did you get over it?

SPEAKER_00 27:29

Well, first, thank you for sharing that because that's the kind of stuff that it's painful to relive when talking about. It is for me, as I'm sure it is for you. Like you told the story enough, and I told the story enough where you can talk about it sort of distance from it, but I purposefully try not to distance myself too much from it because remaining sort of connected with that irrational, you know, anger I had towards my parents, towards others, basically towards anyone who thought that I was, you know, had an illness of any kind that needed to be treated. That was real. In the documentary you referenced at the beginning, I had a uh chance encounter with my dad in a parking lot prior to just very soon leading up to the arrest and first hospitalization. And like I recall, like, like I was never physically violent, but I recall threatening quite verbally. Like I said, I don't know how you found me here. It was just it was just a fluke. My dad was going to a sports store to, you know, he has hobbies, but I was there in that parking lot and I threatened that I was gonna break his face if I ever saw him again. And I said it just like that. Um that's absolutely like I that I mean, that's one of the you know, it's that one of the worst things that you could say, like not even just to someone you know, but like a parent, a family member, that they're trying to do what they can to help you, and it's just met with uh, you know, just a rational rage of sorts. For me, it's verbal, for others, it's physical. And I unfortunately am able to recall quite a bit that I experienced when I have my psychotic episodes. My my psychiatrists all say that that's more of a rarity than the rule. There's a lot of folks who don't remember that. I do remember it. I remember calling sometimes my parents from when I was in the hospital, like, like, how could you turn your back on me like this? Like, you don't know what they're doing to me here. And it was lots of calls where I'm like, you know, this is all your fault type stuff, the kind of thing that you're, you know, might not share overlap with what you're uh describing. There was lots of blame, lots of anger. Sometimes I call them six of the morning, right in the morning, right before breakfast. So the first thing my mom and dad ever heard in the morning was me yelling at them for what they quote unquote I thought had done to me, but really uh they they were doing everything they could to save me. And uh it's not until I get to this point of being able to look back, like I said earlier, like I've never been anyone else, I've only been me. But as soon as I first finally was able to become me, where I recognized I was ill by comparison, because I was so much

Insane? Crazy? PC words?

SPEAKER_00 29:50

so much more relatively healthy and in a normal state where I could process how insane or crazy I was, I say those words hoping that they don't trigger folks. Because I know that some folks they don't like the words insane or crazy, but I I I'm using it hopefully that it gets a rise out of you. Like I'm purposefully saying it as someone of the population, don't try to use words that are watering down what it actually is. There's insanity. I lived it, it needed to be dealt with. There's insanity, others are living it, it needs to be dealt with by individuals and families. So that was a roundabout way, I guess, of saying, yeah, my uh my parents lived some of what you were talking about, Mindy.

SPEAKER_02 30:33

Okay, Eric, I think that that is so important what you just said. You know, I get so much flack for my language. And my feeling is I refuse to tippy toe around this. I'm gonna call it what it is, and I've earned that by being the mother of a son dealing with this for 20 years. And I'm not gonna apologize for using the words, and I think that we need to call it what it is and not come up with safe sort of vanilla phrases that make it seem nicer. You know, I'm noticing on the TV now for this ridiculous capilta, well, you know, that new drug, the new schizophrenia drug. And the ads say if you're a person who's affected by schizophrenia, affected by schizophrenia, as though it's just sort of a little thing that might, you know, make you moody once in a while, you that's not doing anyone any good. Um, I'd like to ask you to do one thing though, because I think for our listeners, I don't know that everybody really understands exactly what AOT is. Could you sort of lay it out there in real clear terms so people know what we're talking about here?

SPEAKER_00 31:43

Sure, absolutely. And thank you so much. Before I go into that, I there's a 30-second caveat I needed to add to my last statement. If an individual, uh, because I I'm a graduate student of social work, if if an individual who's of the diagnosed population, they hear the word and like it's like detrimental to their health. And it's like I'm all for it. Like, no, that's not an that's not a proper thing to do. But as a society, as we talk about legislation and advocacy, and we're tiptoeing around words that are making us more comfortable with the status quo because we're finding pleasant euphemisms instead of calling this what they are. For that, I say, get uncomfortable because that's what it is. Don't be comfortable about this. There's nothing comfortable about this. So stop trying to make yourself that way. So, anyhow, that said, thank you.

SPEAKER_01 32:27

So, so very good 30 seconds that was.

SPEAKER_00 32:30

Thank you so

What is AOT? and polarized politics

SPEAKER_00 32:31

much. So, yeah, that said, AOT is this rare bird where we're living in, and I know people say this perhaps in every generation, in every decade, we are living in one of the most politically polarized and divisive times our country has ever seen. We see that by like razor-thin votes, one way or another, in a lot of areas, uh, and also in other instances. I don't want it to turn into a political argument, but here's why I bring that up. I bring that up because assisted outpatient treatment, some version of that law is on the books in almost every single state in the United States. I can count on one hand, I'm not saying that as a figure of speech. I can literally count on one hand the number of states that have chosen not to enact assisted outpatient treatment. That is a testament to its value and worth and success when it's responsibly and appropriately used, as it is in many areas, including the one I was in. Point to anything else right now, in current events, in contemporary history, where we have all but a like three or four states in agreement that some version of a law should be on the books. Uh, that that's you know, it it might have some change from one state to the next. But as polarizing an issue as everything is, as polarizing an issue as uh you know what what's called forced or coerced treatment uh on the inpatient or outpatient side of things, as polarizing as that is, we've got nearly every state in our the country bought into that. That said, what it is is a lifeline. It's a miracle for people like me who, well, let's call it evidence-based. Miracles aren't necessarily evidence-based. So let's call it it's an evidence-based practice in law where people like me who are pose either danger to themselves or others for me, like I didn't want to drink water. We already talked about all that stuff without needing to rehash it. I was brought in and under a civil court order, I was seen by a psychiatrist, by a social worker, by a judge, by a nurse, by an attorney, making sure my rights aren't being violated as they you know appear uh to the letter of the law. And folks might say, Well, psychiatrists exist, social workers exist, nurses exist. What's what's the magic sauce about this? Because all of these things you're saying already exist. Fair point. They do exist, but I'll say it like this I have I came across you know a judge, and I've been before a judge prior to that. I'd been before doctors prior to that. I've had encounters with social workers before that, uh, nurses. What I hadn't had is a civil court order that brought all of them together to meet my very specific needs based on their expertise that's greater than the sum of its parts. And I know that models like this can exist absent a civil court order, but again, we've talked about that. If people who need care can get it voluntarily, this isn't for you. If people like me who are refusing to drink water, eat food, bathe, staying awake for three days, going down to the FBI headquarters and thinking they're in charge of the world with secret codes gifted from God, you might need a little bit of help with that. I needed help with that. So, what AOT did was resolve all of that. And I'm lucky beyond that, because in my area, I then got to step down from the inpatient care to the AOT order to when I was ready to be on that AOT order. I was put in a group home with other individuals who, when they needed meds, there was someone on site to give it to them, as directed by a medical expert. There was food, breakfast, lunch, and dinner was made for us there. Uh, we earned our trust freedom there, uh you know, quickly. Like when I first got there, I wasn't allowed after a certain hour. Uh, and you know, as things progressed, I was able to be out. Some might call that, you know, rewarding sanity and punishing insanity. I'm saying, look, there are never easy, perfect answers for things, but this that I went through, I absolutely needed. Everything up to that point had failed me. 15 years of failed medication trial and error, 15 years of uh just my parents trying to find a way to get me the help I needed. Everything had failed. And I'm lucky that I lived long enough through the system that wants me to fail just long enough, where okay, we'll get him that involuntary care because he lived long enough and failed long enough that he can get it. Stop that. Let the judges and the medical experts and the social workers do what they're trained to do. And AOT gives them the power to do that. And it's a shared power. I was just as much an active part of my team as the rest of my team was. When I was sane, they would listen to my feedback. And if I was like, Oh, I'm having a massive upset stomach, like 100% of the time, I'm feeling lethargic, all of that, they listened to that and they would change my meds. But if I went to them and I was like, hey, these pills are allowing the government to listen to my thoughts, they'd be like, meds aren't working, and we're not going to listen to that as realistic feedback to represent anything other than the fact that he is slipping again.

SPEAKER_04 37:33

Eric, if you hadn't had a court order for the AOT, if you had just been voluntary when you left the hospital, would you have stuck with it? Or was it the AOT that helped you to keep going with getting the help you needed?

SPEAKER_00 37:47

Well, thank you so much, Mini. That's one of those million-dollar

15 years of failure...before

SPEAKER_00 37:50

hindsight retrospective retrospective questions that I uh I look back on and I think of like this. After 15 years of psychiatry failing me and counseling failing me, none of the meds worked in a lasting fashion. And then I finally got to a point where I was thinking, look, if I took 15 years of worth of medications and they didn't do what they're designed to do, like they did, then I must not have what they're designed to treat. Like there are other people out there who are on these meds and it's it's managing their symptoms. Maybe I have some sort of character defect, some sort of character flaw. It's not the meds. But after 15 years of it, no, absolutely not. Because after failing for 15 years, I felt like I gave the whole concept of psychiatry and medicine a fair shot. Now, the irony here is had AOT existed after, let's say, a year or two years of failed medicine failed medicine and that team and a team was brought together, would I have addressed that voluntarily? Probably, because I was still with a freshman, like, uh, maybe something's wrong with me. I don't know. But the problem is there's so many people, uh, especially of the SMI population, where they're being failed for so long by policy and practice. And sometimes it's, you know, sometimes it's psychiatrists with their hands uh tied together by the bureaucracy of their given retrospective geographic area, because you know, what a 5150 looks like in California, we might find different standards in different states or areas saying, Well, this person does it, this person doesn't meet, you know, what we would give an involuntary order for. And then sometimes someone can just look good enough that the response that I know here's in some areas in Texas is, well, yeah, they're the the professionals show up on site and they're like, Well, this person doesn't appear to be sane, but it's not legal, it's not illegal to be insane. We'd have to find that we're seeing you know some sort of eminent danger they're posing to themselves or others. Right now, they're just not appearing in reality, and that's not good enough. Bye.

SPEAKER_01 39:48

Yeah, we have go ahead. I'm sorry, finish your sentence.

SPEAKER_00 39:51

Please, please go ahead.

SPEAKER_01 39:52

Yeah, so we um we are right here with you. We have done some shows. I don't know if you've listened to our podcast. Uh, it doesn't, you know, we you're here and that's all that matters. We have done shows where we did speak to someone from Massachusetts, one of the handful of states that doesn't have AOT, about these issues. She talks a lot about people dying with their rights on. They have their rights, but they don't have the right to treatment. They don't have the treatment that they need. And obviously, we're all, all four of us fans of of AOT. We did a show a couple of weeks ago with a judge in Connecticut, and I think we actually convinced her that AOT was a good idea. So she was amazing. So you so we these issues are absolutely here. I'm gonna bring this back to me as a mom right now. I'm sitting here wishing you could talk to my son. I'm also sitting here wishing he was in a state of mind to hear what you have to say. I want to give him all credit where credit is due. Maybe he would be at some point, but I, you know, I don't know. And I'm not, you know, gonna give you his number, don't worry. But if you were ready, I might call you. But I would like to know, bringing it back to your story, a little thing and then a bigger thing. You I think mentioned that you had three AOTs before it finally took. Is that correct?

SPEAKER_00 41:11

Yes, is the answer to that, but I know you have more of a question, so I won't go into the explanation yet.

SPEAKER_01 41:16

Okay, so you know, sometimes it takes time, and we can circle back to that a bit if if we want. I would like to know it sounds like you've accomplished a lot since that teamwork, including you, really took. So I want to hear a bit about that, but I also want to know if there hadn't been any AOT. If you hadn't had that civil judgment, where might you be right now in your life?

SPEAKER_00 41:47

Well, the easy answer, the easier answer of those two questions is the latter, and that's dead or in prison. Uh there's there's no better explanation for that. If if I remained untreated, my shelf life on this earth as a living being was probably numbered if I was lucky in months, but more realistically in days. Uh, we didn't get into it today, but I I had luckily in my last encounter with the FBI at their at their headquarters here in San Antonio, where you know, I I I walked, you know, not walked up, but I was in my car trying to enter their secure parking lot. And the guard came out and I said, Hey, I need to talk to this, uh, an agent about uh, you know, all of this stuff that I know. He's like, he's like, No, I no, right. Uh, but it was one of the agents I had seen before, so I knew a name. So the the guard was like, Well, that person's not here right now, but if you'd like to wait, you know, maybe maybe they'll be back and you could get in and see them. So, not in a clear thinking state. I didn't floor it. I was in my car, but I did press the gas and my car went forward. And if you can picture one of those like secure lots where it has one of those things that opens, so my car made contact with that because I figured, look, someone on the inside is gonna let me in, someone's gonna let me in. That's how crazy

before AOT - breaking into the FBI

SPEAKER_00 43:00

I was at that time. Like, this is I like I look back like and I'm like, how did I not get a bullet put in me for all of this stuff, all of these things that I did? Because look, you you could see that on the news where someone's trying to gain access in a vehicle to a secure lot at the FBI, and then they were shot by the guard. The the the public would be like, Yeah, well, yeah, he was trying to gain access to a secure lot at the FBI, and it would be a sad thing that it was related to mental illness, but that would be a potential news story people would see.

SPEAKER_01 43:27

Right.

SPEAKER_00 43:27

Luckily, um, look, I'm not privy to what they talk about there or or or how they run things, but that guard never even drew his weapon. He just kind of kind of came out and like looked at me, and he was just like, Like, please, like, you could just could you just draw like super calm about it. And he was like, could you know, you could feel free to wait in your car over there, as if I hadn't just tried to like get through a secure area under their Lut. So, you know, I I just I just look back on that and I'm like, How did I survive things like that? So, yeah. Dead or dead or in prison.

SPEAKER_01 44:01

That would just be handling for quarters to pay for an invisible psychiatrist, right?

SPEAKER_00 44:06

So most definitely. So that that was the answer to your the latter question. The first question, I want to make sure that I'm addressing exactly what you're asking. So could I get you to please uh yes.

SPEAKER_01 44:16

So uh the little one you said you'd circle back to why it took three AOTs. And I'm not even sure that's that important. The the last one took for some reason, but you you've mentioned so many, and I see in your bio, so much success. So what have you done with your life in the last it's eight years since the

Eric's success since AOT

SPEAKER_01 44:40

AOT?

SPEAKER_00 44:41

Yeah, uh I got out, I got out on AOT the last time the order expired towards the end of 2012.

SPEAKER_01 44:46

So uh what how has your life been? What what have you done instead of being dead or in prison?

SPEAKER_00 44:52

Instead of being dead or in prison, I uh got a four-year degree, I got a BA in psychology, graduated Magna cum laudi with a four-o GPA in every single class from the beginning of my sophomore year through now as a graduate student. I'm currently a master of social work student, and I graduate in December. Um and I'm still maintaining that four-o GPA, and that happens with thanks to AOT. I I want to do do get in the importance of why I was on three OT AOT orders because that is important. It actually further underscores the value of it. So when I was released from the first AOT order after my first hospitalization, I was stable enough to no longer need hospitalization or an AOT order. That's why I was released from the order. Uh, after a while, my uh meds stopped keeping me sane. So uh my parents, instead of calling the needing to call the police to have me arrested for trespassing at this time, the judge and everybody was already all aware of me because I was known to the AOT program in my area. So the judge granted another involuntary inpatient stay for me because I needed it. And after you know, about three months of that, I was released again on the outpatient side of things. But very quickly I decompensated this time. Like it was like my meds were working well enough where like I could be released from the hospital, and after a few weeks, it was almost as if I wasn't taking any meds at all. It was back to that kind of state, so but you were taking them, I was taking them exactly as prescribed, so it just wasn't the right treatment. Well, I mean, in fairness, I'm not I'm not a medical expert or neurologist, but the chaos that was going on in my mind at that time, like I whatever was going on in my brain from one day to the next, had I remained like so the relatively the similar brain chemistry, it probably would have been fine. But I was probably undergoing some pretty rapid shifts from my normal brain chemistry, according to doctors. Again, I'm not the expert, but that's what I've heard as their theories. So I bring this up because the ease with which I was able to be put right back on an inpatient order when I need it and on an outpatient order when I needed it thereafter is a testament to the value of AOT. Because in the absence of that, what happens? We know what happens. We we know what happens. Your listeners know what happened too, just by logic and reason. 911 gets called, or I get taken to an ER who knows nothing about me. They pump me full of something like Haldol, which by the way is one of the meds that just doesn't work for me. It would have been a waste of their time, their money, their resources. Maybe I get into another altercation that doesn't end so well with me and the FBI or the police. Look, it could have unfolded a million different ways. But the value of AOT is that I was a known person to the program. I was able to be put back on an inpatient order by the judge and the psychiatrist familiar with me. That cannot be overstated as valuable because we look, you don't want to start back at square one with someone who's going through a like a medical crisis and a medical emergency. Time is money. And if you can't get someone back to reality or like slow their brain down from going a million miles an hour, that's we know that that continues to cause damage the longer that goes on. What AOT does is it enables a mechanism to get people treatment that they need, and people like myself who've already gotten treatment that didn't work without starting back at square one. And you've probably talked to a lot of parents, a lot of parents and family members who have said, I wish my loved one could have gotten treatment and care at an earlier time. AOT is one of the things that helps make that happen. That's a fact.

SPEAKER_01 48:37

Okay. We uh oh, we're we're this is probably gonna be an hour-long show, but even with that said, we only have about five minutes left. So five, 10 minutes top. So um, but I it's too important to cut your story off at half an hour. So we're either gonna make it a really long podcast, which we can do or split it into two parts. However, it is, people will want to hear both parts. So, Mindy, you had a question and then you I have a question, and I'll try to make it short.

SPEAKER_04 49:04

Maybe Mimi has another one because she's only had, I think, one question. But my question is have you had any interaction with patients' rights groups? I have a little bit, maybe all of us have when we've written books and talked about helping our family members get care when they needed it. And they you addressed this a little bit with talking about it's not for everybody, it's not for probably most people

What about Patients' rights?

SPEAKER_04 49:30

in patients' rights groups or anybody in there if they're taking the tact that involuntary care isn't helpful for for some people. Have you made any progress with any of them, or do they just kind of ignore you? How is that going?

SPEAKER_00 49:47

I would say progress has been made. Um I don't want to put a blanket over everyone, but I'll give a concrete example. So an uh an attorney, actually, one of the senior attorneys with Baslon out of New York, they're they're uh I I'm not talking bad about them, that's their stance that they they are against AOT is my understanding. I recently took part in a panel with uh the Greenberger Center for Social and Criminal Justice. They're based out of New York, New York, in the Manhattan area. And I was part of that panel. And the attorney who is part of that panel as well made a small pivot, but I'll call it progress, where instead of saying, you know, we we have a I have a hardline stance against it, it turned into him saying, I can see the value of AOT. I would want to be involved in future talks about AOT legislation because I can see how, in some instances, it could be valuable. And that might sound like a very small thing, but it is not a very small thing after decades of a hardline stance uh against the AOT and things like it. There's that. There are also other instances, there's something in the works. Uh, I'm actually going to be speaking it uh the in Sacramento, California. I've not announced this yet, so it's being announced right now. Uh the leaders of the city in Sacramento are going to hold an event specifically about AOT, and members uh of their community will be there for QA, and other stated members who I've seen in email will be there, decision makers basically in Sacramento. A public defender will be talking as a public defender about AOT. I will be speaking for 20 minutes in favor of it, and then I do know a person by name in the organization who will be speaking 20 minutes against it. I view this event as pivotal because what happens in Sacramento could have a major effect, a spillover effect in other counties. You may or may not know that in California, each county sort of gets to decide how it implements. Um, I view this and every event really as having the capacity to really shift the narrative and understanding. So I'm approaching this, fully respecting the individual and the organization who will be speaking against it by saying, Look, I advocate for the same thing that your disability rights or civil rights organization is lobbying for. Look, if you can get people voluntary care, fantastic. Sign me up to help you lobby for that. I also want the people listening to understand not everyone can get that. I was too sick to engage in voluntary care. And that's why I'm advocating for something in addition to what you're advocating for. I don't see their side saying, hey, you know what, we're right and you're right. I'm saying you're right, but I'm also right. Let you, yes, we need the voluntary care. We also need the care I got. Uh sign me up to advocate for both.

SPEAKER_04 52:40

Thank you for your progress in that area. That's huge. That's huge.

SPEAKER_00 52:44

Thank you.

SPEAKER_02 52:45

No, I don't have anything in particular. I think we've covered a lot. I just like to sit and listen to Eric talk because he's so eloquent and articulate. The only thing I long for is I forgot who said it. Was it you who said, I would just like you to talk to my son? That's what I feel like too. It's like if I could just put Nick in a room with Eric for an hour, that just the interaction that would happen would be so beneficial because I don't think that people who are like where our sons are at understand that there is a bridge. You know what I mean? That there is. Today Nick and I had a conversation. We were talking about movies, and he was telling me about the Halloween movies. And I guess the the protagonist or antagonist is a guy who's supposedly mentally ill in a hospital and then gets out and starts killing people. And we actually had a conversation where I said to him, Don't you think that's really offensive? That you know, they've used mental illness as saying, you know, you're gonna be this mad person out killing people. And we actually had a conversation about that. And I just think to be able to just talk about these issues and these ideas and talk to somebody like Eric who has moved through it to a different place, it's so helpful for people like our sons, but for everybody.

SPEAKER_01 54:04

And and I loved what you said. Thank you, Mimi. It's so those moments are golden. They're golden. And I haven't really had those conversations with Ben per se yet. But again, it's little, I don't think the light bulb goes off. It's definitely a dimmer switch that kind of is going like this. He has at some point, he actually did three days worth of work last week. And this is um, Eric, you don't know my son's background, but he was on a medication called Clausereal, which I'm sure you're familiar with. For him, that was the thing that enabled him to get off Social Security, lease a Lexis, and work 40 hours a week as a restaurant server with 20, 30 tips. He was that good because it brought back his charm. What he's on right now happens to be Haldall, and it's he's control, I would call him controlled, but not back. And but he swears he feels better. And what I like what you said about AOT is it's not, I think a lot of people think it's a team of people controlling your life. And the way you described it, it's a team of continuous care, and you are part of it. Your input is valued, your feedback is valued, and that's so important. Right now, for my son, he's like, I just like the Helldoll better. So that's his feedback matters, and it's it's a team of which you still have rights, you're a part of the team, but everybody needs varying degrees of structure.

SPEAKER_00 55:31

So Matt, please play one other thing about that. Please do. So we're talking, we were talking about what I've done with my life since then and the value of AOT. And I will explain succinctly and clearly why that couldn't have happened without AOT. When I was feeling well enough towards the end of my last AOT order, where the judge said, uh, all right, Eric, you know, you're about to get off the order. What is it you want to do with your life? Like, what do you want to do? You know, like goals. We were talking about that. It's important the social workers there set me up for success. And I said, Well, at the time it was, I want to go back to community college and I want to get a two-year degree so I could become a chemical dependency counselor. And that wasn't just a fluff conversation. I'll tell you what happened. The judge set aside time for the social worker and their schedule to drive me down to the community college and sit in with their disability advisor at that college to talk about how I could get student disability accommodations to set me up to be a successful student the best way I could possibly be. If the judge in that AOT order doesn't ask Eric, what do you want to do? What are your goals? And then does it like actually follow through if they can help me with that? That never happens. So the so the one small act of asking me that through this AOT order and the social worker actually driving me down there and having a great productive conversation with that school's disability advisor, that snowballed into a Bachelor of Arts in Psychology. It'll be a master's in social work in December. And I am doing everything I can to honor that by not only advocating for the thing that saved my life and enabled that, which is AOT, but also helping everyone else who would benefit by an AOT order. People like me, not everyone with some form of SMI diagnosis, but people similar to me who needed it. And I will never stop advocating against the one thing that turned my life around.

SPEAKER_01 57:20

I think on that note, this is a perfect place to end this episode of Schizophrenia, Three Moms in the Trenches with our guest, Eric Smith. Again, the documentary, which you can see on YouTube, is uh Stopping the Revolving Door, a civil approach to treating severe mental illness. You've also been written about in the book Bedlam. And that's uh by Kenneth Paul Rosenberg, Dr. Rosenberg, and it was a Peabody Award winner. And you are doing so much good work for so many people, and thank you so much for joining us today.

SPEAKER_00 57:56

Thank you.

SPEAKER_01 57:57

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