May 11, 2023

Voices of Recovery: Episode 7

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.  
 

 

Episode:

 


Episode Transcript:

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…"

[10:57] [crosstalk]

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.

[13:16] [crosstalk]

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.

[21:30] [crosstalk]

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 mo…

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