When NAMI’s Chief Medical Officer, Dr. Ken Duckworth, talked with Eric Smith, Eric was finishing up a master’s degree in social work and looking forward to a bright future. It hasn’t always been that way. From an early age, Eric heard voices and had symptoms consistent with bipolar disorder. He turned to marijuana for relief and then moved on to more powerful substances. After that came jail time, worsening mental health, psychiatric hospitalization and, ultimately, recovery. He also dealt with anosognosia, a condition where a person is unaware of their psychiatric condition or mental health issue. Eric shares his powerful and moving story.
This conversation was part of Dr. Duckworth’s research for the book, You Are Not Alone: The NAMI Guide to Navigating Mental Health--With Advice from Experts and Wisdom from Real People and Families. Hear more episodes of this and other podcasts at nami.org/podcast.
Ken Duckworth: [0:00] A warning. This episode contains discussion of suicide.
[0:04] [background music]
Ken: [0:04] Welcome to "You Are Not Alone ‑‑ Voices of Recovery." Hi. I'm Dr. Ken Duckworth. I'm a psychiatrist and the chief medical officer for the National Alliance on Mental Illness, or NAMI. I'm the author of NAMI's first book, "You Are Not Alone ‑‑ The NAMI Guide to Navigating Mental Health, With Advice from Experts and Wisdom from Real People and Families."
[0:23] I interviewed over 100 people who used their names for this book. In this podcast, I wanted to share some of these really inspiring conversations that have teachable lessons for us all.
[0:35] When I spoke with Eric Smith, he was finishing up a master's degree in social work. It's a long way from where he was. From a pretty early age, he heard voices. He had symptoms consistent with bipolar disorder. Eric turned to marijuana for relief and then moved on to more powerful substances.
[0:54] After that came jail time, and psychiatric hospitalization, and ultimately, his own recovery. We'll hear all about that process. It's really something to hear. A couple of terms you should know going into this conversation. Eric describes AOT. AOT stands for assisted outpatient treatment.
[1:15] It's a court‑ordered arrangement where a patient receives psychiatric care while continuing to live in public communities. For Eric, this was the system that made his recovery possible. That's AOT. The other term to know is anosognosia.
[1:32] Anosognosia is a medical term for the experience that occurs in some people with severe mental illness where the person has difficulty perceiving that they have an illness process. You also see this in people who develop Alzheimer's disease and strokes. This phenomena of anosognosia was a key experience that Eric had.
Eric Smith: [1:56] For me, it really manifested itself from the very beginning, where I was being told I'm presenting as someone who's bipolar, or I'm presenting as someone who may have possible attention or personality issues.
[2:12] At that time, I heard it. I wouldn't even categorize it as denial. I was like, "Look, I'm fine." I've never been anyone else, so I didn't have a frame of reference to compare it against. I was like, "Look, I've been me my entire life." I was a successful student. I had friends. "What are you saying? Something is wrong with me? There's nothing wrong," so not denial.
Ken: [2:36] Not denial.
Eric: [2:36] Not denial. I just truly could not possibly wrap my head around the concept that everything I felt my entire life can be attributable to manifestations or extensions of severe mental illness.
Ken: [2:47] One of the things that John Nash said in "A Beautiful Mind" is he said, "Why would I doubt that those hallucinations were part of reality? It's the same place the Nobel Prize came from." This is my experience. It sounds like you were having that. This is your experience, right?
Eric: [3:09] Right. I've never been someone without severe mental illness. I only have one frame of reference from which I can experience. That's how I felt and how I've been. I'm me. I'm not anyone else.
Ken: [3:24] Do you recall hearing voices and interpreting that as a normal experience? Do you recall having what were so‑called delusional beliefs and thinking that was a regular experience? How did it manifest for you, Eric?
Eric: [3:39] This is one of those things where there were times when I was hospitalized where there were pervasive, unavoidable voices that I just couldn't get rid of.
[3:49] When I was in my teenage years, it wasn't so much as that, but I do look back and recall having what I felt was a very loud inner conscience, very loud. Everyone talks about having that voice in their head that helps guide what it is that they do and their inner thought process. Maybe that's what it was. It was loud and unavoidable.
[4:11] Still to this very day, I don't know if that's what everyone else experiences when they listen to their inner voice or something beyond that because, again, I've never been anyone else.
[4:23] I will say that as my mid‑teenage years approached, from post‑age 13, 14, there was a fairly drastic shift that did not occur so gradually ‑‑ it was fairly abrupt ‑‑ where I started to feel emotionally overwhelmed, where there was either lots of up energy or mania, or lots of down energy with depression.
[4:49] I, very soon thereafter, right after experiencing that, turned to marijuana because I felt like any meds that I had been prescribed up to that point hadn't done anything to make me feel better.
[5:08] I'm a young teenage kid. I hear, "Drugs make you feel better." I went to marijuana pretty quick. I bring that up because people talk about, is marijuana a gateway drug or not? Is it good for people who have severe mental illness?
[5:23] I say, within about a month of the first time that I started using marijuana, I very quickly turned to other drugs like LSD and ecstasy thereafter. I was like, "Wow, if pot can make me sort of feel less overwhelmed, what can these harder drugs do?"
[5:43] It was not something that I gave second thought to. That began a long period of time of spiral down with drug usage that I was trying to use to self‑medicate and battle what were becoming increasingly overwhelming thoughts and emotions that I was trying to battle with an increased, harsher and more frequent use of drugs. That was a tug‑of‑war game that I was the only one that stood to lose from. I lost.
Ken: [6:10] How old were you when you started marijuana and then quickly accelerated to the other substances?
Eric: [6:17] I don't remember the exact date that I started to use marijuana. It was either late in my age of 14 or some time early on in my age 15. I didn't keep a calendar of these things, but it was right around that timeframe.
Ken: [6:31] Very young.
Eric: [6:32] Very young.
Ken: [6:34] How long did that journey last for you?
Eric: [6:38] That is something I can put a date to. I don't remember the exact first date, like I said, where I started using marijuana and things went downhill with harder drugs very soon thereafter. I was using fairly heavily numerous different types of drugs right up until I voluntarily entered drug rehab. That was in '06, which I remember fondly.
[7:02] I had spent thousands of dollars procuring Austin City Limits tickets. I bought some for me and my friends. We had a bunch of plans. It unfolded as such where things got bad. I realized that I probably won't be able to go to ACL. I have got to go to rehab with an unlikelihood that if I continued as is that I will even live to see ACL.
Ken: [7:26] You had the awareness, though. We talked about anosognosia earlier. You had the awareness that I'm in trouble and I'm going to pass up this amazing concert.
Eric: [7:36] I want to be very careful with how I describe this. I wouldn't describe it as the type of meaningful insight that you may be thinking that this is. The final culminating event...This is a very unflattering story. I'll try to keep it short.
[7:53] To give you what shifted my thoughts on this is I was using Xanax heavily at the time, not prescribed. I was just acquiring it and inhaling it at the time. In the few days leading up to my stint in rehab, I remember I went to a music store, an electronics store with a friend.
[8:15] She had just got a brand‑new sports car. She drove me and her there so we could look at some new albums, CDs at the time, for the younger folks who may be reading.
Ken: [8:24] [laughs]
Eric: [8:24] That's an actual, physical copy of the music.
Ken: [8:27] Back in the day.
Eric: [8:30] Back in the day. We were there. I'm on probably somewhere between 30 and 40 milligrams of Xanax at this time. This is a super extremely high dose.
Ken: [8:41] Extremely high dose.
Eric: [8:44] I know the amount that I took because, within the day that I acquired about 70 milligrams worth of pills, I had in one 24‑hour period hit right around 60 milligrams, which I met with pleasure. Here's where this story comes to a head of uh‑oh for me. We're there in the electronics store. All of a sudden, I'm feeling rumbles and grumbles in my guts.
[9:11] I want to not romanticize drugs in any way and keep it as real as possible. I'm going to tell it how it happened. I felt rumbles and grumbles. I remember thinking, "I'm not going to make it to the bathroom." Before I could finish that thought, diarrhea right in the middle of the store right where I'm looking at the albums.
[9:30] I'm running to the bathroom. There's mess everywhere. I remember sitting there half fading in and out of consciousness. I don't remember what happened from the time I left the restroom to the time I got back into my friend's car. She was very concerned about me. I remember fading in and out of consciousness as she drove me back to my apartment.
[9:57] I know she needed to get her car very deep cleaned after that. It was covered in excrement at the time that she was driving me back. I woke up cleaned and in my bed hours later. I assume either she showered me or helped clean me up. She was gone by that point, though, so I don't really know.
[10:14] I remember just feeling like, people describe rock bottom, and I had to hit what I thought was rock bottom a few times, but having diarrhea in the middle of an electronic store because I took enough Xanax to kill a person, it was like, "Look, I don't know what's up necessarily with mental illness, but I do see the substance issue as being problematic."
[10:34] I wasn't at a point where I was like, "This isn't anosognosia. I have a mental illness." I was only at a point where I was like, "I have a..." I don't know. It's an unavoidable recognition that I have a very serious problem with substances. At that point in time, I was never like, "This must be related to bipolar or perhaps..."
Eric: [10:57] This was just looking at as just a substance issue with that. I wanted to tell that story to explain, how did I get to rehab without still fully believing that I had mental illness?
Ken: [11:07] The idea that awareness comes at different times for different people on different issues. That's a beautiful illustration of it. You understood you would put your life at risk around substances. That's separate and apart from your thinking about the mental health aspect.
Eric: [11:24] Which at that time, I had already had, my count may be off, but I definitely had one, two, at least four psychiatrists by that point.
[11:37] There were psychiatrists who were trying to convince me and there were psychiatrists who would prescribe me medication that I would take off and on because it was like, "Is this going to work? No, it's not working. I'm only getting bad side effects, so I'm not going to keep taking it. If the meds aren't fixing what it is they're designed to treat, I must not have mental illness."
[11:55] It was actually being fairly logical about it for someone who was fairly insane. I was looking at data objectively and saying, "Look, there's all these meds, all of these psychiatrists that I've been before, all the meds they prescribed me are not changing in any meaningfully positive way, so I must not have what it is they think I have and what it is these meds are designed to treat."
Ken: [12:15] And it's logical. Can't deny that. [laughs] It is logical. I'm talking to your parents, it sounded like, at some point, they got you involved with the AOT process in San Antonio. You go to rehab, you realize you're going to work on the substance side, how many years transpire before your parents engage you with the criminal justice AOT angle?
Eric: [12:50] We're talking ACL '06, is when I'm in...?
Ken: [12:53] Yeah.
Eric: [12:53] Then it was either 2009 or 2010 that I was arrested for the trespassing, transferred to an inpatient hospitalization, stabilized for three months, and then immediately placed on AOT.
Ken: [13:06] The trespassing was where?
Eric: [13:08] At their house.
Ken: [13:10] Their house. That's what I understood from them. They made a decision to use leverage.
Eric: [13:19] kind of. They're the ones who did it, but that was an informed decision from my then‑most recent psychiatrist. Because my parents realizing I was in the worst state that I had ever been in mentally ‑‑ we can talk about, "What does that look like?" but I want to answer your question ‑‑ they're very concerned about me.
[13:42] They realize I am barely involved in reality. Just barely involved in it. It's like I'm living in an alternate dimension and whatever's going on in my head had no basis within the consensus of reality that everyone else can see and live in.
[13:58] They call up my then most recent psychiatrists, which I want to be clear had fairly recently before then fired me as a patient for a number of reasons. I was rude to his staff, I was rude to him. Just my moods were out of control.
[14:18] As I look back on remembering some of the things I said to his staff and some of the things I said to him and in session with my family, with parents, it is terrible to think that I was saying the things that I said.
[14:31] It was just ruthless and beyond insensitive. It was purposefully meant to bring emotional harm. I am not a violent person. Looking back on that, I do see how just out of it that I wanted to just emotionally attack whoever was around me.
[14:49] Anyhow, my parents call him up, and you could probably get the conversation exactly how it unfolded better from them, but here's what happened. They spoke with him and they said, "Look, our son is just the worst he's been. I know that you're not his doctor anymore but you're the one who's seen him the most recently. What can we do?"
[15:07] He said, "The way things are set up now, the best bet for him to get the care and treatment that he needs is to hopefully have him arrested for a low‑level offense so that that way it cannot turn into this big felony deal where the courts are staying involved and [inaudible] ."
[15:24] It was like, "Hopefully he can get arrested for some low‑level offense, and hopefully, before he's released from jail, he can be transferred to the state hospital and he could get the stabilization and care that he needs there."
[15:40] I just want to underscore for the time how crazy it is that a psychiatrist who had had decades of experience, this was not a young psychiatrist, he had had decades of experience. He was towards the tail end of his career.
[15:54] To have to tell parents saying, "My loved one is in crisis," [inaudible] for the advice to have to be, the best bet is for him to get arrested and then hopefully he can get transferred to a hospital?
[16:07] I will consider my life worth having been lived if no one in the United States by the time that I'm gone is told by anyone in this system, "Yeah, your loved one needs mental health care for mental illness. Hopefully, he'll get arrested and then he'll get the care he needs." Lunacy.
Ken: [16:26] That's lunacy.
Eric: [16:29] I know that I kind of ranted on that fair question but...
Ken: [16:34] That's an appropriate rant. I fully endorse this [inaudible] .
Eric: [16:38] Thank you. I'm going to circle back to where the AOT comes into it then because that was the remainder of that question. I'm arrested for trespassing, just the whole jail experience.
[16:52] We could talk about that for hours but let's just say that, at times, I interacted with compassionate and empathetic police officers. At times, I interacted with officers who threatened harm against me. It was always just like, "Look..." I want to be very clear here that none of that is totally their fault so much as they're being tasked to do things that are far outside of their domains.
[17:22] If you task a police officer, and there are some who do it well, but if you task, just in general, police in a jail with handling people going through a severe mental illness crisis, don't expect that to look like how it would look like with a psychiatrist and a social worker...
Ken: [17:35] That's right.
Eric: [17:36] usually interacting with people. This is less of a fault of the officers who are rude and threatening harm against me and more of an indictment against the way society handles...
Ken: [17:45] The whole thing.
Eric: [17:47] putting people with severe mental illness in the criminal justice system.
Ken: [17:49] Exactly.
Eric: [17:52] Fast‑forward, I'm there in jail for a month. No treatment for my mental illness whatsoever, no medicine, no counseling. My delusions, hallucinations, and paranoia, as bad as they were when I got arrested, by the time I was released from jail and put into the inpatient care in a psych hospital, in San Antonio State Hospital, it was beyond anything I ever experienced.
[18:20] I compare it against when I took lots and lots of LSD, which made that look tame compared to what I was feeling and experiencing by the time I was at the tail end of jail. It was an experience that I wouldn't wish upon anyone. It was torturous. I was fearful at all hours of the day.
[18:39] I was worried that people were trying to poison me or hurt me. It was not a good place to be at all. The judge, Judge Oscar Kazen, here in the San Antonio area, he's the one who oversaw my inpatient order as well as my outpatient orders. He sends a court liaison to speak with me.
[18:59] This is largely a result of my parents working as hard as they can to call the jail, speak with people who are listening, "Please don't let our son out of the jail. He needs care for his illness. He's very, very ill. If you release him, what is he supposed to do?"
[19:19] There were people at the jail, at least one call, who told my parents that when I get out, I can panhandle. I can use that money to buy my meds and sleep under a bridge. There's all kinds of reasons why logistically that wouldn't work. First and foremost, perhaps, panhandling is not legal where I live, was given advice to say, "Hey, something illegal." I don't know.
[19:46] I think I might have said this to you on our initial call, where I was like, how is this going to work? I walk into a psychiatrist, and I'm like, "Here's a bunch of nickels, pennies, and dollar bills. I need to see a psychiatrist. I need my meds." Then I walk into a Walgreens, and I'm like, "Here's several thousand pennies and quarters. I need meds."
[20:04] Even if panhandling were legal, there's all kinds of reasons that that's not a realistic solution, on top of the fact that, as I'm sure you're aware, people like me, we need wraparound and continuous services at least until we're out of a crisis state that I'm in.
[20:23] Let's assume that I was able to pay for my psychiatrist in nickels, quarters, and dollars, and then I was able to buy my meds like that, that still doesn't address the issue of me coming in and out of the revolving door that I would have been in.
Ken: [20:36] That's one of the worst plans I've ever heard.
Eric: [20:39] Plan is giving it...
Ken: [20:41] No. In quotation marks. Understood. It's a discharge strategy, which is no strategy or a plan.
Eric: [20:50] Right. Again, we were chalking this up to if I'm a member of the police who are in the jail, and I don't have mental health training, and all I know is mental illness is real, and all I know is there's medications, and all I know is doctors can be seen. I don't really have any meaningful training beyond that because I'm an officer of the criminal justice system, a police officer.
[21:15] It may sound reasonable for me to give the advice of, "Hey, when they get out, there's options." It doesn't address the scope of what's required to me [inaudible] . I want to give them not necessarily a pass for how I was treated all of the time, but a pass in so far as that's not their expertise. To them...
Ken: [21:29] That's right.
Eric: [21:30] solution.
Ken: [21:33] You're asking a house painter to fix your car.
Eric: [21:35] Yeah, exactly.
Ken: [21:36] It's not their training here.
Eric: [21:37] Exactly. My parents were on the phone with them, saying I need all the treatment. This is one of those stories that they'll be able to color in much better because they're the ones directly involved. I was just benefiting from their advocacy. A court liaison from the state hospital eventually shows up in the jail.
[22:00] By that point, I'm already in...I wouldn't call it solitary confinement as one would picture in movies, where it's just a giant black cell, no window. I was in my own cell because I was quite literally making other cellmates and other officers nervous. The things I was saying were out of control, so they put me in my own cell.
[22:24] That's where the court liaison came to talk with me. I remember her saying something to the effect of, "I'm here from the state hospital. I'm here to find out if you'd be a good fit for inpatient care, possibly a good fit for outpatient care thereafter." She really wanted to get to know me. She had some questions for me.
[22:44] I don't know how in touch with reality my answers were at the time, given the state of mind that I was in, but I remember her conveying very positive energy where she's like, "We really want to help you. We know that jail isn't a place for someone like you who needs help and care."
[23:00] Despite how just deteriorated my psychiatric state was, there was like a glimpse of hope where I was finally interacting with someone who at least on some basic fundamental level, I could recognize was seeing the agony and the pain that I was in and how jail is not a place that I should have been right then.
[23:20] I needed to get the care right. I get to the state hospital. I don't believe I slept for the first three or four days I was there despite being pumped full of meds by that point to try to put me down because I was in a super manic state.
[23:37] According to the psychiatrist that I remember from that time, they were above redlining certain milligrams of stuff that I needed to be given because what they were working with was the amount of exhaustion and mania I was in. They just needed me to go from a million miles an hour to bring it down.
[23:53] I remember that they had injected me with some stuff. I don't know what it was, but to try to bring me down. They hadn't given me pills, all of that. Finally, on either late the third day or early the fourth day, I finally ended up going to sleep. I was there for about three months.
[24:12] I don't want to like fast forward through the hospital because you may have questions about it. Getting to the AOT, which, again, was like the last question you asked. I got there thanks to a psychiatrist saying, "Hey, Eric's mom and dad, he needs to, hopefully, be arrested for a low‑level offense." Which I was.
[24:31] Transferred to an inpatient hospital care for stabilization, which I was. Then, transferred to an AOT order when I was stabilized enough to be back in society, which I was.
[24:45] The stars aligned, and I want to put an asterisk on this story, which I'm sure you'll have follow‑up questions to because I also had over the next two and a half‑ish years, I had two more psych hospitalizations each followed by AOT orders.
[24:57] Then I'm cut from my very last AOT order mid to late 2012, and I've had no relapse since then. I am on the only psych med that I require, which is the second asterisk because for most times, I was on five to eight meds at any given time, none of which were working just a lot of bad side effects. Now, I'm on a sub‑therapeutic dose of clozapine, and it's keeping everything in check.
Ken: [25:27] Let's talk a little bit about the psychiatrist who got you on clozapine. I remembered that story from when we chatted on the phone. I think that's important.
Eric: [25:35] That was the third hospitalization psychiatrist because I don't get to clozapine until my third hospitalization in my third AOT order. Are you talking about that time, or are you talking about the time...?
Ken: [25:47] No, conflated them in my mind. I didn't recall that there were three separate hospitalizations and orders. This judge also provided continuity of leverage for you, right? Is that true?
Eric: [26:02] Yes. You are latching onto what I consider to be one of the more valuable aspects of AOT as a civil non‑criminal court order because there are a number of folks who either don't understand it or don't see the value of it for people like me who are of the population that just absolutely need AOT.
[26:21] That judge, as part of the AOT order, is able to leverage his authority as a judge, not to threaten punishment against me of any kind for any reason because he never did that, but to make sure that through that civil court order, that the entire AOT treatment scene is accountable to each other and accountable to me, and that I am also accountable to them.
[26:42] The absence of that judicial/civil legal mechanism there, is what we're hoping is a communicative and collaborative team effort. There are psychiatrists who obviously like, "Well, I'm a psychiatrist. Like I don't need a social worker telling you what to do." I need a social worker saying, "I'm a social worker. I don't need a psychiatrist telling you what to do."
[27:05] And so on and so on with things like that. With the AOT treatment team, we're involving all of the people.
[27:11] If you asked me just like on paper, put a checkbox next to people I would think could be involved in complex cases of SMI like those who are seen by AOT, I would say, "Well you got to have a psychiatrist, med management, things like that. Got to have a social worker because there's got to be that connection with appropriate services and resources." That's the social worker's job.
[27:34] You got to involve a nurse because if there's med management involved, the psychiatrist is going to probably need to have support. For me, the way it was set up, she would take my blood, check my level of [inaudible] , work on making sure everyone was getting the right scripts and everyone was getting it on time.
[27:53] Look, this team effort here is less about one member from one profession or discipline telling someone else what to do so much as engaging in a collaborative effort and saying, "Look, here's what I've seen. I'm going to report to you as a psychiatrist. You can do what you feel like is appropriate."
[28:10] My psychiatrist saying, "Here's what I've seen in session." "As a social worker, here's the recommendations I might make." Then everyone getting together on the team and not telling each other what to do so much as collaborating for the common and more desirable outcomes for the person being served.
[28:28] I do want to mention here that this isn't fluff. I want to give a very specific example one time of where this was a matter of me going insane, again, or nut. [laughs]
[28:39] My parents might also tell you the story because this was a very stressful time for them as well. That is when I was released on the AOT for the first time, and living in a group home with all others who also were just recently released [inaudible] .
[28:56] I was there under the agreement that I would take meds as prescribed, and I did that. I would line up for meds time. I happened to notice one day that I was not called for meds time, and I thought something seems off. Because I have to take the meds as required, and that's something I agreed to, and I didn't want to be accused of not taking my meds.
[29:19] I went and I talked to the person dispensing the meds at this little home, and I said, "I'm pretty sure I'm supposed to take meds. Was my regimen changed?" They said "No, we just ran out of your meds. We're just going to hang tight. Maybe tomorrow or the following day, we'll hope to have more for you."
[29:38] I freaked out because I did not want to go back to the hospital. At that point, I had realized how insane I was because I got to a point where I could live in the community but in a group home where I didn't require inpatient care. I called my parents immediately and I told them this.
[29:54] Somehow, they routed around the house and they were able to find some meds that I believe I had been prescribed but they had hung on to but it had been a long time. I needed it from them. They drove down, I don't know if it was 9 or 10 o'clock at night, came in. They have lives too. Their job wasn't 100 percent to hear me. My dad had a job, mom was working, all of that.
[30:17] They're freaked out. The judge learns about this and tightens everything up. I believe he was ordering more reports to indeed confirm that my meds and everyone else's meds, that that would never happen again. This is what accountability looks like through an AOT order.
[30:37] Because right then, that could have easily happened again. The judge was like, "No, never again." "What can we do?" "I'm going to talk to the psychiatrist [inaudible] to make sure this doesn't happen again."
Ken: [30:47] Let's talk about your testimony in Massachusetts, though, a place that's unwelcome to AOT. I have been impressed at how intransigent Massachusetts is on this. You just testified in Massachusetts between when we last chatted. What was your experience of that? How do they treat you? Were people willing to learn?
Eric: [31:10] I believe that people who are the lawmakers, the lawmakers who were present, were willing to learn. There was a very open‑mindedness. Not just a politician doublespeak where it sounds like [inaudible] , but very substantive, and meaningful, and thoughtful statements and questions [inaudible].
[31:32] I want to be thoughtful and mindful to differentiate that there were people from the lived experience population who were speaking just vehemently against it.
[31:45] I was listening to them, and the way that I hear, whenever it's opposition, whether people are angry, or they feel strongly about it, one way or another, I listen and I am never, ever reaching a point in my mind, where I'm like, "Wow, these people don't know what they're talking about. They're bad people." I want to listen thoughtfully.
[32:04] What I heard was confusion and misunderstanding. A lot of the opposition, even from professionals, but highly from the lived experience populace, they said, "I don't want to be forced to take medication, and I've got mental illness. I don't think others should be forced to take medication." I'm listening to that, and AOT in no area can forcefully require someone to take medication.
[32:30] It can be part of the civil order and treatment plan of which it is all the time that I'm aware of, but there is no legal recourse for someone not taking their meds. The way that it works, and you're a medical doctor, correct? You're aware of this.
Ken: [11:03] Yes. I'm a psychiatrist, yeah.
Eric: [17:32] Psychiatrist. If someone's an inpatient, they can get all kinds of court‑ordered forcefully administered medicines, where it's prescribed by injection, pills, or anything, and it's like that person has got to take it and if they don't, they're getting a shot. That's not how AOT works.
[33:02] Then the follow‑up question that I get is, "If someone isn't forced to take meds, why on earth would something like AOT work for someone who's just like, 'I don't want to do this. I'm out of here'?"
[33:16] For the vast majority of cases where there's data on AOT, the simple truth is, people get to a point where they realize, "Wow, I didn't know that I was that far gone and I didn't realize that I was so insane.
"[33:29] I get to a point now where I can pursue friendships and employment, make money, live on my own, live in the community. I am not having these constant interactions with police or being hospitalized a whole bunch. That I have a life." They see this, and I saw that, and I didn't want to stop taking my meds. There wasn't a threat of punishment.
[33:49] It was never, "You're going to take your meds or else." It was, "Take your meds. If you don't, you're aware of what happens to you. [inaudible] you ended up in jail, you ended up in a hospital. These are not places you want to be. While I can't force you to take the meds, we know that taking them will prevent you from being places you don't want to be."
[34:11] There is no forcefully administered medication. It's not like someone's holding up one of those hypnosis things and saying, [eerily] "You will take your medication." I'm not being hypnotized into believing this is something I need to do because someone else believes so.
[34:27] I get to this point of insight where I'm like, "Wait a second. I can live a life. I don't have to be hospitalized. I don't have to be in jail. Yeah, I'm going to keep taking them." I don't want to generalize that to 100 percent of people because, of course, there's going to be some people who are like, "Nah."
[34:44] Either they don't reach a point of insight, or they stopped taking their meds for a whole other reasons, but the data is there that it works for the majority. The vast majority of the people who take it.
[34:55] According to the Treatment Advocacy Center's recently released recently published research of the people who completed AOT ‑‑ and this is not just in one area, this was respondents from around the country ‑‑ north of 90 percent of the respondents who were participants in the program like myself, were satisfied or very satisfied with the services they received, and their level of happiness with their life.
[35:17] This concept of misunderstanding that drives opposition to AOT, where it's like, "This is forceful and coercive [inaudible] meds," it is just objectively not true. It is verifiably false. Secondly, the fact that there's this vast misconception that people don't want to be in this.
[35:35] The numbers gathered from people in the programs, that also is not true. My third point, which is personal and not to data, but something I really hope people understand. I said this to the folks in [inaudible] . Is they're concerned about forceful and coercive treatment being bad and that people shouldn't be forced or coerced to any.
[35:58] My response to that is the most forceful and coercive thing that I have ever experienced is not impatient hospitalization. It is not being jailed. It is not assisted outpatient treatment. The most forceful and coercive thing I have ever experienced is my own severe mental illness when untreated or undertreated.
[36:19] To become clear, it is AOT that helped free me from that coercive and forceful cycle. That's what I want people to understand about it.
Ken: [36:30] Let's shift gears a little bit. What would you say your current understanding is of your diagnosis, knowing the diagnosis has its own challenges? Is it bipolar disorder, schizoaffective disorder, substance plus those, schizophrenia?
[36:41] How do you understand it, knowing that we don't have a lot of great lines in this line of work? I fully accept that. I'm not asking you to do more than the field can do itself. What's your current understanding of that?
Eric: [37:00] My current understanding of my diagnosis, which I don't think is the actual question you're asking, but I think it's important to mention, is that, short of a cure being developed for bipolar disorder, which is what I'm diagnosed with by psychiatrists who have never seen me hospitalized, and the fact that there's no cure for schizoaffective disorder, which is what psychiatrists who have seen me as a psych inpatient have diagnosed me with.
[37:32] I am at a point, largely thanks to AOT and the combined efforts of a treatment team, where my recognition is aligned with what's known. That is, short of a cure or cures being developed, this is a treatment that I will have to adhere to lifelong.
[37:49] This is not something where I will reach either 15 or 20 years of stability, and somehow, that's a threshold at which I no longer require treatment. I'm at peace with the fact that, short of a cure, this is something I will need to be engaged in lifelong.
Ken: [38:08] You're saying you've accepted something along the lines of bipolar versus schizoaffective disorder. That's enough for me. I'm just trying to understand. Some docs think it's a. Some docs think it's b. Either way, you're at peace with it, correct?
Eric: [38:23] I'm at peace with it. Yes. To be totally honest with you, there are professionals...I have exceptionally close relationships with a number of my professors from undergrad and also graduate.
[38:35] One of my former professors, who's an accomplished clinical and experimental psychologist, is saying, "Look, you're on such a low dose of the meds you're on now. You're on such a low dose of one medicine. You've been stable for such a long time.
"[38:55] Would you consider talking with your psychiatrist and kicking around the idea of, maybe just one year at a time, even going down from 75 to 50 milligrams, 50 to 25 and seeing what happens?"
[39:05] I'm like, "I don't want to risk it." He said, "There are long‑term risks associated with psychotropics. They're extremely powerful. Even though you're on a low dose, still, it's a powerful medicine. It is what it is."
[39:24] I was like, "Look, after everything that my family, after everything I went through, everything I put society through for the better part of a decade and a half of failed meds, failed counseling, and failed treatment, that's not a roll of the dice I'm willing to take."
[39:43] I'm telling this person, I'm like ‑‑ and I think I mentioned some of this to you ‑‑ "The FBI got involved. I went down to their headquarters. The FBI went to my house, talked to my parents. The Secret Service got involved. They came to visit me. I was calling the CIA. I was calling various embassies around the world and in the US. They just got crazy."
[40:04] I don't think it would ever be reasonable or responsible for me to be like, "Let's see if this is a flip and destabilize it."
Ken: [40:18] Let's roll the dice.
Eric: [40:18] It's just not there. I want to be very sensitive and mindful to those who may be reading your book who do take meds or have loved ones who are taking meds. They are seeing or personally experiencing incredibly intolerable side effects. I experienced some of that.
[40:33] I told you there was a time, for several years, my head would not stop turning to the left. It's very painful. I was considering ending my life, not because I was depressed but because it was so painful. I did not want to live the rest of my life out like that.
[40:48] I am very sensitive and relate to the fact there can be untoward side effects people would want to end their life over. I am not currently experiencing any of those things, though I don't think it's reasonable or fair for me to be like, let's see what happens. Let's see if I end up hospitalized. That's not in the cards. Is it possible? Maybe.
[41:09] I am enjoying and appreciating sanity and connecting with other people, connecting with you, connecting with...reconnecting with myself, making friends, building a life for myself. To be like, hey, let's see if I don't need these meds.
Ken: [41:24] Right. So much to lose and you're not having a lot of side effects at all now. How is the social work school with your experience? Is that something you're transparent about?
Eric: [41:35] They know everything. Whenever I do something new, like I was a guest on Dr. Drew's podcast, and I was a guest on his live show, when I was quoted in the "New York Daily News" recently, I send updates to all of them. They actually occasionally, they post to their official Facebook and Twitter pages.
[42:00] They're like, here is MSW, master of social work, student, Eric Smith. Here's what he's doing. Here's what he's up to. That's awesome. They're totally behind it. It would be...
Ken: [42:10] 100 percent behind it.
Eric: [42:11] 100 percent. They are so great. In fact, one of my professors, fantastically intelligent person, and she's my professor. About a year and a half ago, I started in her class. She and I, much like a lot of my other professors, as I mentioned, remain in consistent contact with one another about a number of things.
[42:36] She asked if I would be willing to come in and speak with two of the classes that she teaches, because one of the things she teaches as part of her class is disability classes. She thinks that this is a great issue to talk about, AOT specifically, because not everything is clean cut as like, is this a violation of rights versus are we saving people's lives and protecting [inaudible] ?
[43:01] She invited to speak with two of her classes. She graciously gave me like an hour, hour and a half, to speak and answer questions to her class. This is just one example of professors...Another more quickly explained example is another professor in one of the later semesters saw all the treatment advocacy center posts that I had made writing about AOT.
[43:28] She allowed me to submit those as my final project for her class, and she asked me...But she asked on the condition [inaudible] to the class, because this is the kind of thing I would hope students eventually get to the point where they're passionate, it's [inaudible] . It's evoking a sense of something needs to be done. Call into...
Ken: [43:50] Call into action.
Eric: [43:52] Exactly.
Ken: [43:52] Eric, you realize how big a change this is in our society, because a decade ago, you would not be celebrated and welcomed for this.
Eric: [44:01] It's very much so. One of the deans, not the dean of the university but one of the associate [inaudible] , is someone who I also speak with regularly. This individual was telling me that there was a time where these things that I'm doing right now would have probably prevented me...Like it was [inaudible] from maybe getting let into a program.
Ken: [44:30] Correct.
Eric: [44:31] Viewed in a way where I...Instead of being viewed as the dedicated and beautiful student that I am, what I would be seen as is, this person's bipolar. I'm just waiting [inaudible] . I don't want them in my class. They're violent. There is a bunch of misconceptions.
[44:52] I feel like, whether anyone reading this is either not religious, or religious, or spiritual, or none of the above, it does feel almost miraculous to read about how things weren't at times past for me, times that you experienced.
Ken: [45:13] Yes.
Eric: [45:13] You're slightly older than I am, right? What are you like 30...
Ken: [45:17] [laughs] That's hilarious.
Ken: [45:19] You're old enough to be my son. I would have had you early in life. I'm 62 years old. When I wrote that my dad had very bad bipolar in my essay to become a psychiatrist, I was either ignored or ridiculed except for one person who said, "This is fantastic."
[45:40] That's the reason I moved to Boston and I'm still on staff at that place. It was one person out of probably 40 people I interviewed with. This gives you some insight. This was simply my family experience. This wasn't commenting on myself. This w as just my true experience.
[45:56] I've talked to a few other people who are in social work school. You are changing the world because all of the people that you're exposing to for who you are, they're seeing it differently than they were trained to see it. I think it's a beautiful thing. I think the word miraculous is appropriate.
[46:16] It hasn't been hard for me to find people who want to use their names and tell their stories. One of the publishers said to me, "I don't think you'll be able to find people to use their names."
[46:28] I said, "That was true a decade ago. I think it's different now. People want to help other people and continue to change the equation." I want to salute you for everything you're doing to change the world. Really, I feel that. Your contribution to this book will be a piece of that.
[46:43] I hope to sell more than one copy. My wife will buy one copy. I'm certain of that. Last question for you, Eric. What is your definition of recovery?
Eric: [46:50] This is going to sound super cliché.
Ken: [46:53] Let's go, though. None of what you've said has been clichéd so far. Not one word.
Eric: [47:03] I'll throw out the cliché and then try to break it down as something...I don't believe...I've not been trained by any of my professors or any of the materials that I've read. Recovery is not an endpoint. Recovery is eternal.
[47:16] In addition to that, recovery can look different to a lot of people because I don't want to provide a false sense of hope to families and people out there who, for years...We're going on 50 and 60 hospitalizations with incarceration. If anything, those are getting worse and not better. I know that that's the case for some people.
[47:42] My response to that, because I have had interactions with families that reached out to me individually saying, "That's great you've reached this point where you can help people see a need for change in this world. Mental health reform, [inaudible] reform is relates to [inaudible] ."
[47:58] The alternative to living with hope is without hope. If anyone is hopeless, even if it seems like an earned sense of hopelessness with the 40 and 50 hospitalizations and incarcerations, hopelessness...It might be earned, but that doesn't ever allow for the earn of events that occurred for me and so many others.
[48:31] Keep in mind, to keep everything defined accurately here, I was very close to considering ending my life because of the pain associated with it. Short of the clozapine, nothing else had worked. I had been incarcerated. I had interactions with the FBI that luckily didn't result in any tragic experience for me.
[48:51] I had interactions with the Secret Service. Police, FBI, embassy. It was all this stuff. There wasn't a massive tragedy that unfolded. I didn't end up dead under an overpass.
[49:04] All of these things are things that could have happened. I was not far away from. I wasn't far away at all. The fact that I could form a coherent sentence after being on all of these high doses of anti‑psychotics prior to that. My parents didn't know if I was ever going to be able to form sentences again or just live a life.
[49:30] I was there, so for people who are going to read this and for people who are part of conversations saying, "I'm hopeless for good reason because here's what happened." I was hopeless for good reason because a bunch of stuff happened [inaudible] .
[49:46] Don't ever give up the hope. It showed up in my life that I believed...I fully believed ending my life was the only best option because of the pain, because there was no good outcomes that could have come, because all the meds I had failed. I'm not a good student. I couldn't hold a job. Psychiatrists didn't want me as a patient. My relationships and friends completely disintegrated. My life was worthless.
[50:09] Like that, everything turned around as soon as AOT was introduced into my life. I know I didn't speak a ton about the value of AOT. I see we have two minutes left. With 30 seconds, I want to add to the importance here of circling back to AOT and my team did not do the order with blinders, forced blinders on saying, "Here's where the order begins. Here's where it ends. That's that."
[50:39] They were actively involved with understanding the history leading up to this part and understanding that with their assistance, my life would continue when the order was gone. They made sure that before the order was terminated, right here in this area, that there were wheels in motion for my continued success.
[50:57] That meant the judge providing the social worker time to drive me to, at that time, community college because my goal...chemical dependency counselor at that time and provide me with a meeting of how to get student disability accommodations with that school's disability advisor.
[51:13] It was important for that AOT team to say, "This order, which means the beginning and the end here, that's not you as a person. This is you. We're trying to set you up for a positive, successful, happy, healthy life thereafter."
[51:26] Prior to AOT, all of the unconditional love, which was a lot from my family, was not enough to make that happen. All of the interactions I had had with the multiple psychiatrists who got rid of me as a patient, that wasn't enough. All of the meds I took, that wasn't enough.
[51:45] But, AOT then comes along and we know the trajectory I was on, what that looks like. It wouldn't have stopped until I was six feet under or became incarcerated because that's what happens to people like me.
[51:56] [background music]
Eric: [51:56] AOT comes along as this safety net and this team who are from various different professions. They are greater than the sum of their parts when [inaudible] to collaborate for the common good. That's what they did for me, what they can do for others.
[52:10] If we want to stop people from SMI falling through the cracks, people like me absolutely need it. It saves us and helps us free us. It doesn't confine us. It doesn't force or coerce us to do anything. It frees us to live happy and healthy lives.
Ken: [52:24] This has been "You Are Not Alone ‑‑ Voice of Recovery." For more episodes of this and other NAMI podcasts, visit nami.org/podcasts or check wherever you get your podcasts.
[52:41] For more information on the book You Are Not Alone, visit nami.org/youarenotalonebook. It's a pretty good book. This podcast was produced by John Moe and Jordan Miller for the National Alliance on Mental Illness. We get engineering help from John Miller. I'm Ken Duckworth and thank you for listening.
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