Let's talk about the voices - What the heck is schizophrenia ? (Ep. 3)

• What is schizophrenia? - definitions we use/hear - what it is not
• What do you think happens in your son’s head when symptomatic? What does it look like to you and your family? What do you observe?
• What changes when treatment is effective? What doesn’t change?
• Positive and Negative Symptoms of Schizophrenia
• How can we empathize?
• What effect do street drugs have on treatment?

Quotes:

“Schizophrenia is a serious mental disorder in which people interpret reality abnormally. Schizophrenia may result in some combination of hallucinations, delusions, and extremely disordered thinking and behavior that impairs daily functioning, and can be disabling. People with schizophrenia require lifelong treatment.” - MayoClinic

“The fact that he would have this constant loop of negative voices in his head, and I have no ability to fix it or help him...it’s devastating” - Mimi

“And I’ve heard him whisper, under his breath, ‘no, that’s just my mom’ which makes me think ‘what are the voices telling him about me?’”- Randye 

“Sometimes he’ll do a reality check on the ‘voices.’  He’ll say ‘Mom, did you just say you don’t like me?’ And I assure him I would never say that” - Mindy

Transcript

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SPEAKER_00 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. Finally, a place to talk about the truth. Today, as promised, we want to talk about what the heck is schizophrenia. And let's talk about the voices. I've never heard them. I can only talk about my perception of the voices, but I don't know about you guys. I keep getting your son as what? Is that multiple personality disorder? Is that like the three faces of Eve? What do you say to people when they say, tell me about schizophrenia?

SPEAKER_01 0:49

They're always very sorry that they asked. Because I really explain it to them. You know, I explain the way I do it is I explain to them because everybody kind of has an idea of what bipolar is. So I use that as my jumping off point. And I explain to them that bipolar is a mood disorder, and that the moods undulate or you know go up and down and up and down. But that schizophrenia is a thought disorder. So it's a different thing. It doesn't have to do, though, of course, kids are affected, then that's a whole other talk. But that schizophrenia is a thought disorder. And I explained to them about disordered thoughts, and I get pretty technical about it. And I explain about psychosis and all of that because I mean it's not, there's not a simple explanation for what it is, really.

SPEAKER_00 1:37

Well, I've got I've got one in front of me. Yeah. I'll read it because the first one I looked up was like way too many words. So this I think is kind of interesting. Schizophrenia is a serious mental disorder in which people interpret reality abnormally. It may result in some combination of hallucinations, delusions, and extremely disordered thinking and behavior that impairs daily functioning and can be disabling. Let's see, and then you know what I did? I Googled schizophrenia definition simple to see what I came up with.

SPEAKER_02 2:14

Well, what do you say, Mindy, when people ask you to actually the biggest thing that I hate is when I how I get into the topic of schizophrenia is often if somebody says, I felt schizophrenic about that, that is nails on the blackboard for me. When Mimi said they're sorry they asked her, for me, they're sorry they said that. When I was chairing a committee in the Minnesota House of Representatives, I would tell my committee early on my caucus that if they wanted their bills heard, do not say I feel schizophrenic about anything, because that is that's going to re-slow down how often I want to bring your bills up. So the idea of being schizophrenic, of course, is when you people usually mean they can't decide. It could be this, it could be that. And that is definitely a much simpler thing than schizophrenia. But with Jim, he does have a thought disorder. He does hear voices. Often he wants to not acknowledge that he hears voices, he just has intrusive thoughts, he thinks. He thinks that's more socially acceptable. When he has his guard down, he does confess to hearing voices. And the delusions, nobody has to tell uh his family that he has those because then he's off in another planet. So that's what I tell people is just give some stories about Jim, and they have a pretty good idea.

SPEAKER_00 3:43

Yeah, and last week you told a rather harrowing story about how his voices were telling him to kill you. So that kind of brings it home. But from what I gather from your book, Fix What You Can, he seems to be partnering in his own recovery. Like he understands that he hears these intrusive thoughts and he tries to fight them.

SPEAKER_02 4:09

That's true. We're really grateful and we feel very fortunate. We don't feel fortunate that he has skective disorder, but we feel fortunate that he has the insight that he does. I know that so many families deal with people that don't acknowledge their illness because their brain doesn't allow them to. So the fact that Jim knows he has an illness, he takes his meds himself, he orders them from the pharmacy, he deals with all his mental health professionals himself. That is huge in our ability to cope with his mental illness. We have to deal with our relationships, sometimes driving him places, making sure he's eating healthy foods. But his illness, he is able to handle himself. Thank goodness for smartphones. I don't know if he could manage his schedule if he didn't have a smartphone.

SPEAKER_01 5:03

Nick, it's a lot of that. Nick is just like a little boy when it, you know. I mean, it's like I have to handle everything. And to this day, he still doesn't admit to acknowledge hearing voices or anything like that. So I have, I mean, I know that he does because I've seen it. But what does it look like? It looks like him just being somewhere else and responding to stimulus that isn't there and talking to himself, and you know, all the sort of textbook things you would imagine. And you know, it's this big area of unknowableness for me. And I saw something on the internet once which just was devastating. Uh they did a it was a short video that had been made to uh illustrate what it's like for somebody who hears voices, and they took it from somebody's explanation of what it was like. So they reenacted it. And the thing that I remember is it was a person going into a 7-Eleven and going to buy things, and wherever he would go, you know, he he would hear voices like, Don't get that. Why would you get that? You're fat already, you're disgusting. See that person? They're looking at you, they're looking at you because you're so ugly, nobody would want to be. And you know, I'd read that the voices are negative, but it never had become real to me until I watched that video, and it just was devastating. It just broke my heart. The idea that again, like you were saying last week, my little boy, the idea that, you know, as a when they're kids, all we do is try and get them to a point where they can deal with the negativity and the challenges of life and all of that. And to think that he would have this loop going in his head saying, you're ugly, you're stupid, you're fat, and you can't do anything. And I would have I have no ability to fix it or help him or even know what it is, was overwhelming. I mean, even now when I think about that, it just it may it's devastating.

SPEAKER_00 7:04

Yeah. One of the most powerful things for me as I began to understand schizophrenia was trying to imagine what it's like for Ben, because like Nick, he, I, you know, I'm not I'm not talking to any voices. Mom, you walk around going, where are my car keys? Are you crazy? And we all had that voice inside of us that goes, don't wear those jeans, you're too fat. I mean, we all had these little thoughts, but I think we know how to refute them, or we know once we're aware of them, we know how to refute them. They generally don't interfere with our normal functions.

SPEAKER_01 7:37

But we know that they're thoughts. Right. I don't think our sons know that they're thoughts. I mean, a lot of them.

SPEAKER_00 7:43

Yeah. And that's what I like with my son, I have seen him unmedicated, wandering the neighborhood in a bathrobe or wandering in the house, or wandering the halls of a psychiatric unit, mumbling under his breath, and his eyes just go like this all the time, like off to the side. And it's just kind of there's twitching, and there's, and I've heard him whisper under his breath, no, that's just my mom. No, that's just my mom, which makes me think, what are they telling him about me? There are things that I see, and we are observers, we're not inside their heads. I don't know what it's like for them. Without giving away the details, in family to family, there is an exercise you get to at a certain point in the eight weeks where you get to experience what it might be like to hear voices. And that I burst into tears when I participated in that because I thought this is what he lives with all day long. And on Facebook, there are some family support groups where people with schizophrenia are on there and they describe what their voices are like. And maybe if for my son, if I called them, are you know, are you having loud thoughts today? Or, but he will never, he's very stubborn, he's a Taurus on top of everything else, but he will never admit to having voices, or they've just been so real to him for so long that it doesn't seem abnormal to him. When people ask me to describe what I think it must be like, I think about when I woke up from surgery and the morphine was still in my system. And my husband was trying to ask me a question, and I started to answer it, but I couldn't get to the end of my sentence. By the time I got to the end of the sentence, I forgot what the question was because it's morphine. And I think that when my son is unmedicated, there's a great gap between when I ask a question and when he can answer it. It's almost like he's in a his mind is in a bar with 12 televisions going on at full blast at once. And even with the real things going on in the world, he can't filter out things like we can.

SPEAKER_01 9:58

So they are. Everything's all coming at once. You know, the thing with my son that drives me crazy is sometimes when we're together, he'll just start laughing. And he'll just start laughing to himself. And I'll say, What are you laughing at? And he'll just look at me like you'll never understand and look away. And then I feel like, oh, he and the voices are laughing at me. Great. You know, I feel like it's Nick and the voices making fun of me. Because you don't know.

SPEAKER_00 10:25

No, you don't know. I and again, with my son, he won't admit to anything. All I have are journal entries from when he used to have hypergraphia and write lists of things to do, start my own country in Africa and cause world peace. Get my mom into anger management. That was one of his goals. You know, he would just, there are grand delusions, and it's not just about voices. I mean, one of the most powerful things I learned about was positive and negative symptoms of schizophrenia. Not mean good and bad, they're all bad as far as I'm concerned, but positive meaning things that get added to your loved one's personality, like delusions and hallucinations, and negative being the things that the illness takes away from them. The ability to feel joy, the ability to laugh with your mother instead of at her with your voices, the ability to start an online business and know what that takes.

SPEAKER_01 11:25

And and and even really profound things, like you said, the ability to feel joy, the ability to feel happiness, to feel love, to feel empathy. You know, Nick is on a new medication now, he's on clauzapine and he's improving so much. And one of the first things I noticed was when he calls me up. It used to be he would call me up and it would be just he would launch into whatever the campaign was for the latest thing that he wanted from me. And now I I noticed the first thing I noticed after a few weeks or a month or two was he would call and I would say hello and he would go, Hi mom, how are you? He had this, you know, I mean, that he would even be able to step out of himself enough to consider for a moment what somebody else was feeling. Huge.

SPEAKER_02 12:12

The negative symptoms actually that bother me the most. The positive symptoms are the things that are more apt to be addressed by medication. And Jim is right now is also on clozapine or closeril. And when he did the best early on, until he got allergic to it, he also was on that drug. So I know that medicine can address those symptoms, but the negative symptoms are they're somewhat addressed by clozapine more than the other meds, I'm told. But I still, those are the things I grieve over, what we've lost with Jim, his ability. He was very, as often the case with all of our sons, I think, from reading your books, a talented, uh smart, academically gifted person. And yet now he can't concentrate to read a book. And he used to read a lot, even early in his illness, he read a lot. I mentioned in the last program that he read one of the books I held up that helped me. But now he hasn't read a book uh for years because that is something he can't concentrate on. He can sometimes read a magazine article or a newspaper if he's at a coffee shop somehow. He thinks he can focus better there. But man, I get so much joy out of reading and think that he used to and he can't anymore.

SPEAKER_00 13:36

Yeah.

SPEAKER_02 13:37

He does a lot of money, you know, compared to what he would have had if he was having a career. So he's his ability to gift people in a parallel way with family members, that is something that I think bothers him because he's a very generous person. And then I can see that it bothers him, and then it bothers me. So those kind of things I think are are harder to deal with, even than the overt things. It was very hard when Jim thought he needed to kill me, I must say. But once we got over that hump, some of the other things we can actually laugh about at times. One time Jim and I were driving and he was saying something, and I was answering back. And then he said, By the way, uh, you have light shining out of your fingers, and it looks like you have a halo. That we laughed about. So those kind of things like are easier to deal with than the losses.

SPEAKER_01 14:35

You want to hear a funny one? During the time when Nick was during the time of my book, The 10 Years at My Book Spans, one of the extra added attractions was I got a brain tumor. Oh, yay! I was going through the treatment of getting ready to have surgery for this brain tumor. And then it came time that I was going in to have the surgeries, I had to explain it to Nick. And we're sitting here, I explained to him about the brain tumor, and he, you know, I didn't want to scare him. And he says, Well, but you're gonna be all right, right? And I yeah, you're gonna, yes, I am. So then he was fine with that. So then it was explained to him how I found out the problem. And the problem was something with my spine. And when if I would sit down really hard, or if I would, you know, I'm a painter and some ladders and things, and I jump off the truck. If I would jump off the truck, I would feel like there was electric current coming out of my fingers. And that was this weird thing that happened, and there's actually a technical name for it, and that's how they got on the route to finding out it was a brain tumor. So I was telling him this funny story. This is how they found out is I would jump off the truck and it would be like electricity was coming out of my fingers. Isn't that funny, Nick? And he looked at me and he goes, Oh, that that happens to everyone.

SPEAKER_02 15:49

That sounds exactly like the story I just told about forgot about that story to each other.

SPEAKER_01 15:55

Oh, that that happens to everyone. What are you talking about? That's not a big deal.

SPEAKER_00 16:00

Wow. You know, it's funny when for me, there were so many. We talked last week about wild goose chases, and a lot of them went on in my own head. I thought, what kind what drug is he on? What do you mean, what's a psychic vampire? I mean, my son was homeless wandering around Idaho for five months with me thinking he'll hit bottom and he'll come home. It was a real turning point for me when I kept going to different psychiatrists until somebody could explain it when he said, if he's got a mental illness and he hits bottom, he's just gonna go. It's pretty nice down here. Get him home if you can. But my son would call me every week and talk about psychic vampires. And I, you know, I just like, what drug is he on? I didn't know anything about schizophrenia. And as I began to learn the symptoms, light bulbs, it wasn't like energy coming out of my fingers. It was like a light bulb's going on in my head, go, oh, that's what that was. He came home from Montana and Idaho with like staying up all night talking to bushes and being so excited because he told me God gave him the secret of the universe through the bush. And I once paid him $10 to talk about the weather. I said, okay, listen. I'm just like, for this meal, can you just make small talk? Like, please don't solve the universe for me, you know, just make small talk. But I know one time, even medicated, even I don't like that word, even in treatment with medication to balance his brain as best it can. My perception is that the voices are damped down and somewhat in his control. But I think they're still there until recently and until COVID hit, he had worked his way off of disability and on to the point where he was working full-time as a restaurant server. And I do not know how he managed five tables. He was the best waiter in the restaurant. He would train the new people. And I think it was just the job gave him that structure and focus to quiet the voices. But then he would come home. And I think any parent that had a kid with ADD, they had the same thing. If they, you know, the Adderall works during the day and then they come home and they crash. I think the voices that were just trying to talk to him the whole time he was at work would just get really, really loud when he came home. There was one time he needed a minor surgery and he refused to do it for a year and a half, and finally he did. And it was an outpatient walk away. And as I was walking across the bridge to get to my car and he was downstairs smoking a cigarette, and I could see him through the window. And this was on medication, in treatment. He was like gesturing and talking to his voices, leading me to believe that for at least a year the voices were saying, don't do that surgery, don't do that surgery. And it's almost like he was going, see, it wasn't a big deal. They're there. And I don't know how anybody with schizophrenia lives with that. Maybe some of our listeners can write to us and let us know what it's like for them. Maybe we'll talk to you. I would love to know. Jim gives you insight, Mindy. My son says he never hears anything, and yet I have burn marks on the ceiling of his old room. He won't tell me what they are. He will not cut his hair. Does he have a Samsung complex? I realize now that he's been in the hospital five months since COVID hit, that he never ate anything I cooked. Did the voices tell him I was trying to poison him? Like he's not very forthcoming, and he's they've been with him for so long that it's real to him. It's got to be as real as a dream feels when you're in the middle of it.

SPEAKER_02 19:46

That is something that a lot of people have told me who are dealing with mental illness and who have someone in their family with schizophrenia, that they appreciate reading my books so they can hear Jim talking about his voices and what he does about them. Some passages in the book, including the prologue, where there's exact dialogue that Jim shared with me about what the voices were telling him when they're telling him to crash into a car. And he's saying, No, I don't want to. It's my car, you know, I need my wheels. So he he talks about what the voices say. He does at other times say, I don't hear voices. He wanted me not to call them voices in the book. We had a whole runaround about that for several weeks. But he likes to say he has uh thoughts or he hears things that sound like people's voices, but they're just thoughts. And so I still think it's he knows it's socially unacceptable. But he is now on clozapine or clauseril, and that allows him to have much fewer voices. But he does reality check. He's learned to do that through working with various psychologists. And so if he thinks he heard something, he will do a reality check. So he'll say, Mom, did you just say something? And I'll say, No, I didn't. Did you hear something? And he said, Well, I thought I did, but I guess I didn't. Or he will say, Did you just say you don't like me? I'll say, Of course not. If you ever think I said that, you know for sure that's a voice because you know I wouldn't say that. And he says, Um, I know you wouldn't. And then he goes on. But when he's really doing well on medication, he feels such a sense of relief because he doesn't have to hear so many voices and he doesn't have to sort out what's real and what is not real.

SPEAKER_01 21:43

That is what that must be like. What a burden. Yes. You know, I found out something just recently. Nick always has fans going in his house, even when it's cold, he has these fans. I'm always freezing in there. And I said to him recently, I said, Nick, it's a Of winter, it's really cold. Why do you have these fans on all the time? Are you hot? And he said, No, he said, I like the noise, it drowns, and then he stopped himself. But he was starting to say something, and then I asked his doctor, and his doctor said, It's not uncommon that people with schizophrenia want to have something like a fan or something like that because it's like white noise and it drowns out the voices or earphones and listening to music.

SPEAKER_00 22:32

Yeah. Very loudly. My son used to, I would like, why is the radio up so loud? He would come in my car before he, well, he may have to do that again since he's lost his cars, but you know, he'd turn it up so loud. And I think it was an attempt, although he won't. I'm a little jealous. I got to admit it, Mindy. I'm so just jealous that Jim like gets it. I don't know that my son ever will. You know, he is this close to being discharged from the hospital. I am amazed that he is he's never been hospitalized for nearly five months before. And we're trying to get housing in COVID era right now. And they've kept him in, which is unbelievable, as you know. And it's an easier time for me. He is safe, he's being taken care of. I'm terrified what will happen when he gets out. But at any rate, just you know, it the the voices and what he must be going through, and will he ever admit it? I just don't know. But the loudness of the music, the attempt to drown it out, I keep thinking of the final scene in Beautiful Mind, which was a beautiful but poetic interpretation of schizophrenia where John Nash admits kind of under his breath that he's taking medication. Like they don't really talk about that, but that he does sort of get control of the voices. But um yeah.

SPEAKER_02 23:59

Well, I'll tell you when Jim does break with reality, and then we don't feel so lucky, and this could maybe be another program. We don't need to go into it tonight. But when Jim is using um street drugs, that just destroys his medications ability to work. And that's when we see a side of him that I don't think you would be jealous of the Grylings to see, because Jim, when he's on drugs and his medications aren't working, uh, becomes a whole different person and he becomes very mean. He says mean things and he tries to be mean because he somehow that destroys. We can see how his meds are doing so much good because when he's using street drugs, they stop. He's been sober for over a year, so we're fortunate he's a wonderful person again. But there were several years when he was using crack cocaine and marijuana and other things, and then his meds didn't work. And we saw, you know, what we could be dealing with when his meds didn't work. He still took them, but they just didn't didn't do it.

SPEAKER_00 25:06

Wow. So that's yeah, that's another dual diagnosis, could be definitely another another topic. And uh if you're listening right now or watching this on YouTube, if you have things you want us to address, we'd be happy to do it. So believe it or not, we only have about two minutes left. So, you know, we've shared our experiences with schizophrenia. It definitely is a thought disorder where your thoughts are disordered. They do not disorder, they don't perceive reality the way we do most of the time. Definitely, in our experience, treatment helps, whatever that looks like to you. But uh for my son, medication is a huge part of that. The positive symptoms are the hallucinations and delusions that are added to the personality. The negative symptoms are things that sadly the illness takes away, the ability to empathize, the ability to feel joy. They may not want to be touched. Planning a constructive day is very difficult for them. Sort of there's something called blunt affect where I just feel like there's no life in my son's eyes like there used to be. And that's really hard. We have those rare moments when the clouds break and we share a joke, or I have a video that I just sent his psychiatrist at the hospital so they can see who they're saving. When he made a he could focus, he made a speech at his sister's wedding, or waited on a table and made a joke and always brought colored pens so the kids at the table could write with them. So let's just end with some rays of hope, and then we'll talk about episode four. Just watch this spot to see what we talk about. So for me, I look for those moments when the clouds are parting, and I see my son. It's much easier for those clouds to part and the sun to shine through when he's on the right medication. Mindy?

SPEAKER_02 27:01

You know, for me, and right now Jim is on the right medication. He's sober. And today he said, just today, Mom, I think I need a better job so I can work more hours than the one that I have. I have more energy than I've had, and I need to earn more money.

SPEAKER_00 27:23

Excellent. Mimi, any rays of hope?

SPEAKER_01 27:26

Well, you know, um, Nick isn't as functional as what you guys are describing. But for me, you know, the worst thing about this was standing and looking at your son and feeling like he was gone and yet there right in front of you. You know, there's almost a cruel joke aspect to this. I mean, honestly, there are times when I thought I would rather he just had died, because at least then I would know and be able to grieve rather than see him right in front of me all in one piece, as handsome and wonderful as he ever was, all there, but not him anymore. So for me, the moments are, and they're more and more now, when there's just that glint or that moment when he's a lot of times when he's with his sisters and they'll reminisce about something, or he'll make a joke, or he'll smile at something that you say, and it's that connection and that's that affirmation that he's still in there, he's still there, it's still him.

SPEAKER_00 28:26

Yeah. It's when you go, oh, there you are. Yeah. There you are. And we live for these moments, and we're fierce moms doing everything we can so they have more of those moments. So we are a schizophrenia three moms in the trenches. Hang on to hope. 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 Miriamfeldman.com, mindygryling.com, or randyk.com.