AfterWords - Stopping the Revolving Door - Assisted Outpatient Treatment (Ep. 16)

Sometimes the best parts of the conversation happen after we press "stop" - so today we captured what happened after that. Guest is Eric Smith, 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).

AfterWords:

Why does Eric advocate for AOT?

What about AOT for someone who isn’t as “stellar” as Eric?

What’s a real human right? To make your own decision to refuse treatment while your brain is ill, or to receive “ordered” treatment when you’re  not yet aware that you need it?

Treatment, Structure. Purpose, Love - 4 elements of success.

“The least amount of harm and the most amount of good”

When families refuse to be the caretakers -what team can take over if we fight for it?

The pitfalls of the child-parent dynamic

From Serious mental Illness to   Thriving in reality

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 Feltman, Mindy Greiling, and Randy Kaye. Well, after an hour of conversation with Eric, we still had more to say. So in the after we push the stop button party, Mimi and Mindy and Eric and I keep on talking, and we covered some pretty cool stuff. So hope you'll enjoy the next 10 minutes of the afterwards of episode 15.

SPEAKER_00 0:37

I would love to be involved with an event with her, with y'all, whatever it takes. It's not about me trying to get my name out there. I'm just trying to get AOT out there. And it just so happens that uh somehow that usually entails my name being out there as well. I'd be totally happy not being recognized, but folks want to hear me talk about it and I want to talk about it.

SPEAKER_02 1:01

Either they're healthier and all along and never had to have it, and therefore they're against it. Or if they did have to have it, they're not as articulate as you. My son has had it many, many, many times, and he's now for the last um almost two years been on clozapine. So he's doing really, really well. It would be wonderful if he could be doing as well as you, but he's also making a lot of progress. Um, and um AOT saved his life and saved um him being able to even make the progress that he has. So, but since he isn't able to speak about it and advocate for it like you are, I think there's nobody better to advocate than speaking with the opponents than somebody like you who's been through it and has a mental illness and supports it.

SPEAKER_01 1:52

And it's not to say that everybody's going to work their way up to a master's in social work.

SPEAKER_03 1:56

I mean, that doesn't even have to be the goal.

SPEAKER_01 1:59

Right. The goal could just be getting back with your family, like all the other things you mentioned, that you've you've re-established relationships with your family, and it seems like you have a life and you have friends, and at least I hope you do.

SPEAKER_00 2:12

Yes, I do. And there there is that. And you you all just touched on something very quickly that's worth addressing. So, Treatment Advocacy Center in years past, not currently, has gotten pushback from people on both sides who are supportive and not supportive of AOT, saying, Look, Eric's experience is incredible, but not everyone's going to end up, you know, getting some stellar GPA and a master's degree. And I addressed that. Like, I as soon as I heard that, I was like, Look, I'm not saying these things are what AOT will allow for everybody. The value and the testament to the value of AOT is in how it reduced my problematic and dangerous symptoms that owned every part of my life that enabled me to pursue my dreams, which happened to be those things. The value is in how it reduces, or in my case, eliminates dangerous and problematic symptoms. And when that happens in a person's life, sky's the limit. I know it's going to be different for everybody, but those are incredible limitations.

SPEAKER_03 3:07

And if you can't, you know what I think is such a salient point that you made that I that I'm going to use again is the idea that people talk about AOTs restricting your rights, and that the most restrictive thing, the most detrimental thing to your right to a life is your SMI, not the AOT. And I think that that's something we didn't address too much in this conversation. That is an important component of this, is that whole, you know, the whole idea of dying with your rights on, and the whole issue of the people who are against AOT are somehow hiding behind this veil of we're doing it to protect people's human rights, when really SMI in cases like yours and certainly my son's, you know, destroys and degrades a person's humanity far more than a slight restriction from a court order to take your medication. And also the whole component that when you're as ill as somebody in psychosis, you don't have the capacity to understand that you're sick. So how in the world are you going to seek treatment? You know, it's like saying, well, if a guy is unconscious and in a coma and there's a medication that can help him, let's ask him if he wants it. And if he doesn't say yes, we won't give it.

SPEAKER_02 4:28

That's right. That's a really good analogy. But even if everybody doesn't get a master's degree and a BA with Magna Kublati and a 4.0, you know, just to not be in prison or dead, you know, to me that's that's huge progress too.

SPEAKER_00 4:45

It is, it is, and and and very much so I agree with everything that y'all have said. And and I try to approach something, well, life in general, where I try to make choices where whether it's for me helping others, I want to do the least amount of harm and the most amount of good. I I know quite technically AOT, it assisted outpatient treatment. I know that as a technicality, it is involuntary or it is coerced or it is forced treatment, whatever people want to call it. But the least amount of harm and the most amount of good is that AOT order. The most amount of harm and the least amount of good is an absence of an order like that for people like me, because I am just absolutely consumed with uh, you know, not drinking water, not eating food, staying awake for three days, trying to charge into the FBI headquarters. Lucky it wasn't like murder by an FBI agent for me.

SPEAKER_01 5:35

For my son, right now, and I I am speaking for him, which I recognize isn't necessarily my right, but it's my perspective of what he's going through now. I I do wish his medical treatment were different and he would accept the medication that helps him more, but that may or may not happen. But I will say, and and I in the years, uh in the successful years, I would go around talking about recovery and saying that it's treatment, whatever that means to you, structure, purpose, and love. And love can come from your family, it can come from your community, like all of those things matter to all of us, and it's part of mental illness treatment. And even though there's no AOT for my son, he is currently, and we just held out. We we we we just said you can't release him. He was in the hospital five and a half months recently, and we just said no, he can't come home. And that forced them to find something for him, and he is in a group home with a lovely staff, with people to take a walk with, with people to go have some coffee with. He's not unhappy, he is not asking to come home, and that's huge. He also has a team, I he it seems to me like he feels like he has a team. He has a psychiatrist that sees once a month for 15 minutes, but still, you know, he has a therapist. Like he's not being asked to choose and find these people. This was a team given to him and a visiting nurse that brings his meds and someone to help him shop, and someone to they took him bowling for his birthday. Like those little things. It's a smaller life than he had a year ago before COVID when he was working full time and had some friends to hang out with. But we all know the shoots and ladders of this recovery. But even though it's not officially AOT, it is sort of forced upon him by my refusal to totally take over his life anymore. And I believe he's benefiting from feeling like there's a team on his side that works with him. And I hope it felt that way to you too, Eric, a little bit when you had the successful run with AOT.

SPEAKER_00 7:46

Sounds like 100% felt that way. Like I when I when I found myself in my AOT hearings, you know, how are you feeling on your meds? And even that instance where I talked about where he, you know, sets me up to talk with uh the social worker to go down to the campus. Like, I remember thinking, like, you know, what did I do to deserve this? Because like this feels like everyone's really on my side, and like, you know, not like anything I say goes, but it's like, you know, I if I can have goals, like there's a team of people quite literally here to help me accomplish that, or at least set me up where I'll be best positioned to, you know, fly on my own and learn to accomplish stuff like that. And um, yeah, and it isn't because that my parents were incompetent as individuals to be able to not teach me those things. Uh, I was just super ill. It took, it took the AOT order of a judge and the psychiatrist and the social worker because my parents might be experienced at being parents, but they didn't, I wasn't born with a handbook on how to deal with, you know, here, mom and dad, when I hit my late teens and in my 20s, you're gonna need this, read it up because you know, I've got some massive SMI stuff coming.

SPEAKER_03 8:46

I'd gotten that book. Yeah, I would have bought it.

SPEAKER_00 8:50

A best seller. Yeah, yeah, exactly. Right to the number one non-stop. So, yeah, I wasn't born with a handbook, and I know no kid is, but SMI is an especially complex set of circumstances that even the most brilliant of parents uh aren't aren't ready for ever.

SPEAKER_01 9:05

And even if we are, we're still your parents. I mean, there's still that dynamic of my mommy told me I have to, um, you know, I believe for my son, if we tell him to do something, he he feels less than a man.

SPEAKER_00 9:17

I I felt that too. I felt there was there were times I felt emasculated by the whole process, but I um I mean, I just that's I just couldn't be further from that right now. And it has nothing to do with the school stuff that I'm doing, it's really mostly tied to uh thriving in reality where I got to a point to do that where I could help others do the same. You know, I I'm valuing the school experience, and it's totally an awesome you know, bonus to help in that. But uh yeah, what what when my when I want to think about something that's gonna make me smile, the A's aren't the thing that I first think about. It's the fact that, like, my parents, my brother, people who know me can just like exhale for once and realize they don't have to wake up every day or throughout the day, like, oh my god, I wonder what Eric is getting into. That is what makes me happiest. Again, the A's are a bonus, but uh, I mean, my parents and my brother, they just held their breath for like a decade and a half.

SPEAKER_01 10:15

I really am gonna stop recording me up with Eric. Thank you so much. I wish you so much love and the best of everything.

SPEAKER_00 10:23

Thank you all so much, Randy, Mindy, and or Miriam.

SPEAKER_03 10:25

Yeah, Mimi's fine. It's just because of the book they keep telling me to say Miriam because it relates to the book. But people, everybody calls Miami.

SPEAKER_00 10:33

Got it. But have a good one. Thank you again.

SPEAKER_01 10:35

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