Joe
Age at interview: 23
Age at diagnosis: 21
Brief Outline: Joe experienced psychosis and depression in his second year at university shortly after finding out, over the summer, about the death of four people he cared about. He works full time and has found ways to manage the voices and hallucinations.
Background: Joe works full time in IT and at the time of the interview worked as a Ward Clerk in a Cancer care ward. He is white British.
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When Joe started university, it was the first time he felt happy. Then, during the summer after his first year, two of his friends, his favourite teacher and a relative died in quick succession and he began having anxiety attacks as well as experiencing depression. He worried about people close to him being hurt and began hearing voices, having visual hallucinations and remembering events in the wrong order or having false memories of things that hadn’t happened.
When Joe told the university counsellor that he had started hearing voices, the counsellor referred him to the psychosis clinic. After the referral he was seen by seven different professionals in two weeks, each giving him different explanations for his experiences, before he was finally referred on. He was having a bad episode at the time and, he describes how for him, seeing so many new faces was not helpful: “faces just kind of morph, and go weird and awful and scary”.
Although he graduated with a degree in biology, the psychosis, and the medication and regular outpatient appointments in his second year, made it difficult to study. He was taking on average two days off a week, either for outpatient appointments, or because he was unwell, and this could be unpredictable, so that some weeks he would make it to all his lectures, but other weeks he’d attend none.
Over the course of his treatment he has tried a number of different anti-psychotic medicines which all had unpleasant side effects. The first medicine he was given was olanzapine which gave him bad nosebleeds. He then started taking aripiprazole, but this stopped him sleeping so he was then prescribed quetiapine which made him drowsy. The worst medication for him was risperidone which made him experience very bad dizziness.
Joe no longer takes medication and tries to manage his symptoms in different ways and to approach them logically. His friends have been a big source of support for Joe and he believes he would not be alive without them. He has had group CBT therapy and has found it helpful hearing other people’s experiences. Knowing that others were having similar or worse experiences made it easier for him to cope with his own. Joe notes that it is important to be “adaptive” in the way you manage your condition. Sometimes things that wouldn’t have worked in the past do work now. For example, Joe has now “made peace” with his voices - this is something he doesn’t think he could have done before. Although he gets some visual hallucinations, such as seeing rats in places where they shouldn’t be, he hasn’t had any false memories in a long time.
Joe has not been given a formal diagnosis, which he believes is a positive thing. He thinks that people sometimes “live up to” the their diagnoses and that it can become a “self-fulfilling prophecy”
Joe recognises that stress can trigger his psychosis and finds that mindfulness techniques and meditation can help in certain situations. He also believes that psychosis is a fear response – that hallucinations are the brain’s way of trying to warn you about something and trigger a fight or flight response. When he is having hallucinations, trying to be more aware of what is happening in the moment can help. Joe tries to keep positive and uses the idea of a “misery quota” where you decide how much misery you can deal with in a day. This helps him on a daily basis to focus on the good things and not just be taking on the bad. It’s also important for him to have some background noise around him and he often listens to music or an audio book because “silence feels like it’s full of things that are going to suddenly start shouting”.
Keeping busy is important for Joe to manage his condition. At the time of interview he was working full time as a ward clerk on a cancer ward, and he changed jobs to work in IT within the health sector shortly after the interview. He also has hobbies such as theatre acting and production, a role playing board game (Dungeons and Dragons) and keeping and studying insects. In the future he hopes to do a master’s degree in Theatre.
When Joe told the university counsellor that he had started hearing voices, the counsellor referred him to the psychosis clinic. After the referral he was seen by seven different professionals in two weeks, each giving him different explanations for his experiences, before he was finally referred on. He was having a bad episode at the time and, he describes how for him, seeing so many new faces was not helpful: “faces just kind of morph, and go weird and awful and scary”.
Although he graduated with a degree in biology, the psychosis, and the medication and regular outpatient appointments in his second year, made it difficult to study. He was taking on average two days off a week, either for outpatient appointments, or because he was unwell, and this could be unpredictable, so that some weeks he would make it to all his lectures, but other weeks he’d attend none.
Over the course of his treatment he has tried a number of different anti-psychotic medicines which all had unpleasant side effects. The first medicine he was given was olanzapine which gave him bad nosebleeds. He then started taking aripiprazole, but this stopped him sleeping so he was then prescribed quetiapine which made him drowsy. The worst medication for him was risperidone which made him experience very bad dizziness.
Joe no longer takes medication and tries to manage his symptoms in different ways and to approach them logically. His friends have been a big source of support for Joe and he believes he would not be alive without them. He has had group CBT therapy and has found it helpful hearing other people’s experiences. Knowing that others were having similar or worse experiences made it easier for him to cope with his own. Joe notes that it is important to be “adaptive” in the way you manage your condition. Sometimes things that wouldn’t have worked in the past do work now. For example, Joe has now “made peace” with his voices - this is something he doesn’t think he could have done before. Although he gets some visual hallucinations, such as seeing rats in places where they shouldn’t be, he hasn’t had any false memories in a long time.
Joe has not been given a formal diagnosis, which he believes is a positive thing. He thinks that people sometimes “live up to” the their diagnoses and that it can become a “self-fulfilling prophecy”
Joe recognises that stress can trigger his psychosis and finds that mindfulness techniques and meditation can help in certain situations. He also believes that psychosis is a fear response – that hallucinations are the brain’s way of trying to warn you about something and trigger a fight or flight response. When he is having hallucinations, trying to be more aware of what is happening in the moment can help. Joe tries to keep positive and uses the idea of a “misery quota” where you decide how much misery you can deal with in a day. This helps him on a daily basis to focus on the good things and not just be taking on the bad. It’s also important for him to have some background noise around him and he often listens to music or an audio book because “silence feels like it’s full of things that are going to suddenly start shouting”.
Keeping busy is important for Joe to manage his condition. At the time of interview he was working full time as a ward clerk on a cancer ward, and he changed jobs to work in IT within the health sector shortly after the interview. He also has hobbies such as theatre acting and production, a role playing board game (Dungeons and Dragons) and keeping and studying insects. In the future he hopes to do a master’s degree in Theatre.
Joe doesn’t remember being happy before he started university. Growing up he was expected to “man up”.
Joe doesn’t remember being happy before he started university. Growing up he was expected to “man up”.
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Either about three months before, or about five years before, depending on what you define as depression. Because I don't really remember being happy before my first year of uni. The first year of uni, best year of my life. I got into theatre. I wasn't living with my parents any more, I didn't have to see my family. I was, with all my friends, people I genuinely cared about. And then everything just started deconstructing, from the summer onwards.
Okay. And had you had any sort of help with the depression beforehand?
No. I – [sigh]
Just that second year of uni?
Yeah. It was - it was almost like when I got to uni, after my friends died I had a reason to go and seek help. But growing up it was always, you know, stiff upper lip, bite the bullet. You know you, just - you know - man up. Which was a bit crap [laugh].
Yeah.
But, yeah.
And do you think - Well we'll talk about that a bit later, about sort of other support around -
Yeah
And so when you went and sought help for the depression, was that something you initiated?
Mostly. I thought I should really go and see someone. But I was having anxiety attacks at the same time. And like three times I walked up the steps towards the, the - I forget - what's it called - Student services building. And then just left again. And then I texted someone in my group, I said [to my friend] ", can you take me there, because I know I won't go myself?" And, yeah.
Joe’s first psychotic experience happened when he heard his grandfather’s voice, criticising him, over his right shoulder.
Joe’s first psychotic experience happened when he heard his grandfather’s voice, criticising him, over his right shoulder.
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It was two years before the word ‘schizophrenia’ was mentioned to Joe and he thinks that that was right for him. He thinks labels can be a “self-fulfilling prophecy”.
It was two years before the word ‘schizophrenia’ was mentioned to Joe and he thinks that that was right for him. He thinks labels can be a “self-fulfilling prophecy”.
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And I think it's probably a good thing that that is the policy, to not say anything. Because I think people - people are fluid, they fill the shape of whatever container they're in.
Okay. So for you, a kind of general discussion around your symptoms, let's say.
Yeah. Yeah.
Rather than giving you a label, was a good thing.
Yeah. I think genuinely a lot better. Because mental illness is so weird and vast and different for everyone anyway, that it can't be helpful to put people in this box with this specific set of labels.
Joe, who had studied biology, said his voices come from different places in and around his body and he associated them with colours. He wonders if different voices come from different parts of the brain.
Joe, who had studied biology, said his voices come from different places in and around his body and he associated them with colours. He wonders if different voices come from different parts of the brain.
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Joe’s first visual hallucination was very upsetting. When it finished he believed he had hurt people he cared about. Afterwards he discovered none of it had happened but to him it felt as though two realities had happened at the same time.
Joe’s first visual hallucination was very upsetting. When it finished he believed he had hurt people he cared about. Afterwards he discovered none of it had happened but to him it felt as though two realities had happened at the same time.
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Joe had memories that “weren’t real” or remembered things happening in the wrong order.
Joe had memories that “weren’t real” or remembered things happening in the wrong order.
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And then did you realise at the time? Or was there a point at which you realised that, that you were not remembering things in the right order, or?
Yeah. Honestly, there was one particular one which was, just around the August, so about two months before the first time I heard a voice. Me and my then girlfriend broke up. For completely unrelated reasons. And then I kept meeting her at parties, and she kept just calling me a freak, and saying awful things. And like yelling at me. And then I was like 'why is she being such a bitch, why are we arguing like this, why has she changed so much?' And then, like - I think at a party I actually confronted her about it. And she said, "But that didn't happen. None of this is - We haven't spoken in four months." And I was like 'okay, actually - that does make a real kind of sense'. Because that, yeah.
So it was a visual - it was visual hallucinations then, and things?
I don't even know if they were - They were different from the other visual hallucinations I had. Because it wasn't 'I can see this happening now', it's 'I remember this happening', but.
Right. So it's a memory, rather than -
Yeah.
Yeah. Okay. A memory that felt real.
Yeah.
Joe’s voices make him feel “blasts of emotion”. He uses mindfulness and meditation to make his brain “calm” so that the voices become calmer.
Joe’s voices make him feel “blasts of emotion”. He uses mindfulness and meditation to make his brain “calm” so that the voices become calmer.
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So in terms of sort of managing it day to day now, and drawing on those things that you've learned –
I don't ever get them less frequently. Throughout the whole process, I've never got voices less frequently than I used to. But it depends what they do as to how much it affects my life. And nowadays it might just be - I got, I got - some of them - Well, all of them would sometimes communicate. Not even with words, just with sort of making me feel blasts of emotion. Like seeing, I don’t know, a person walk past the window, and I just got tremendously angry all of a sudden. Because that voice had access to that bit of my brain that could make me feel furious. But nowadays I might get a very brief flash of understanding and emotion but I don't really get that any more. I think because I am calmer about it in general, and they are parts of my brain which is calmer, they themselves are less stressed about - yeah. Well, you say - They, they perceive danger on a sort of heightened scale. So my voices, if they see something that is 2 out of 10 dangerous, would say 6 out of 10 dangerous. If they see something that's 4 out of 10 dangerous, they'd see a 10. But if I'm like a minus 2 anyway, they'd probably only see it as a 2 and it wouldn't be a problem.
So, how do you get your brain to minus 2? [Laugh].
Practice [laugh].
Yeah.
Honestly, just - I do a lot of mindfulness and meditation stuff. And actively try and make myself not worry. I think one of the things I've discovered is you, you can't change things. I - Because my job is quite stressful and awful sometimes, but the only way I'm going to ever cope in that job is at four o'clock when I leave, just leave it behind.
Because you can't – If you, if you hold all of the stress you could have at one point with you at any one time, it'll burn you up. You've got to sort of compartmentalise and get it to be - I can deal with it.
Joe has had multi-sensory hallucinations that involve him hurting others. Even though they only happened in his head he feels he needs to treat them as though they were real and tries to ‘forgive’ himself for what happened during the hallucination.
Joe has had multi-sensory hallucinations that involve him hurting others. Even though they only happened in his head he feels he needs to treat them as though they were real and tries to ‘forgive’ himself for what happened during the hallucination.
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And then I walked back to the house. Because - Because at that point, I - That had actually happened for me.
Yeah.
I was basically going back to see if I could do anything to help. And then I got to the house, and they both opened the door, and it was completely fine. And my world just kind of melted together. Because it was two completely conflicting, but both completely real things happening in tandem. And, yeah. And, yeah. That was the first time I had a visual hallucination, or one that involved other senses. And that's what I mean about things being - whether you can if things are real. Because both those things, according to my sort of linear perspective on life - both of them happened around the same time. And both were exactly as real as each other. The only difference is, I'm living in a world with the results of one of those. But I could quite easily be living the other world, with the results of the other.
Yeah.
But that's something I sort of took quite a while to come to terms with. And I think it was somehow easier to – it, it was easier to accept that it happened, and try to forgive myself for it, than it was to try and say it didn't happen. Because -
It was easier to forget that happened? Than it was -
It was easier to forgive myself for it happening, even though I know I didn't do it. If that makes sense.
Okay.
Because the - If I denied that it happened, I have to deny every experience I've ever had, because it involved the same information.
If I play by these rules in this world - so like if I pick up that cup, it's going to be heavy, that's the same rules that world uses. So I have to - I don't know if any of this makes sense outside of my head.
Yeah. No, it does. You've kind of got to treat it as though it happened. So, this is real –
Yeah. Because otherwise you have - Otherwise you can't treat anything like anything happens. And then you're just sort of a nihilist, and. Yeah.
Joe’s school counsellor quickly referred him to EIP when he said he was hearing voices. But he then had two weeks seeing lots of different people before he started getting help.
Joe’s school counsellor quickly referred him to EIP when he said he was hearing voices. But he then had two weeks seeing lots of different people before he started getting help.
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Okay.
But I [sigh]. I went and said, "I'm hearing voices and seeing things." And it is amazing how quickly a university guidance counsellor who was a bit crap will switch from not really caring, to be being very, very efficient, when you say "I'm hearing voices telling me to kill people." [Laugh] Yeah.
Within like five minutes I was on the phone to the psychosis service, and they were saying "Okay, we'll set up a meeting. You should come here and we'll do this - we'll, we’ll, you know, we'll talk through it a bit, and you can come here." And that was sort of - [sigh]. I think I saw about seven different people in two weeks. Which I wouldn't do again. Because I - All, all of them said "Okay, I think - I think you have this, and this is why this is." And I got nine different answers from seven different people, in two weeks. And when I actually settled into one place and was dealt with by this person, that was fine. But seeing this sort of bizarre array of faces. Faces are another weird thing for me, because if I'm sort of having a bad episode, faces just kind of morph, and go weird and awful, and scary.
Right.
But that - Especially new ones. So like if you were locked in a room with somebody who just looks a bit scary [laugh]. Yeah.
Joe thinks his hallucinations are his brain’s way of showing fear. Taking medication is like stopping his “fight or flight” response and isn’t going to help.
Joe thinks his hallucinations are his brain’s way of showing fear. Taking medication is like stopping his “fight or flight” response and isn’t going to help.
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And it - So, hallucination is probably a bit of your brain that doesn't speak the same language you do, warning you about something. So, she said, it's like sitting on the sofa watching TV with one of your friends, and an enormous poisonous spider climbs up, and you say "Watch out for that." And medication in that scenario is someone getting a big - that person getting a big awful dirty sofa cushion, and just pressing it on your head so you can't say anything. And I think both I and my voices really agree with that, because it's [sigh].
Yeah.
At the end of the day, all your voices are still a part of your brain, they still have your bests interests at heart, even if they don't know how to tell you. And I think making peace with them that way. So instead of just putting a shield wall up and saying 'nah', saying 'okay, I understand why you think that, but I'm fine', has been a lot better for me in the long run.
Joe found someone online who had “spookily similar” experiences to him. She suggested things that helped her and he found they helped him too.
Joe found someone online who had “spookily similar” experiences to him. She suggested things that helped her and he found they helped him too.
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Yeah.
But I guess that's - One thing I have considered is, maybe eventually you could categorise all types of mental illness, because maybe some people's brains just - that particular chemical trips off that reaction in the same way.
Okay.
Or you could at least classify these bits. But it was - What basically, just yeah. Found
So, what's similar about it? The actual images, or when it happened, or?
Yeah. The hallucinations. The background. The specific experiences. Even the specific - it was like someone who'd had an abusive family member who became one of their voices, who was the worst voice. And then they had another voice that sounded like them. And then one voice that helped them. And it was like - ironically, a more paranoid man than me would think someone had written this about me [laugh].
Ah, wow. So, just totally - yeah.
Yeah.
And what did that mean to you, when you - I mean, you said it kind of had a big - you know, really had a [inaudible]
It was basically someone who's further along than I was. And had said, "This helped me." And I thought 'well, if all that's the same, I might as well give that a go'. And yeah, and it did work, so.
Joe has made new friends since he started experiencing psychosis. His friends are really important and he says he’d be dead without them.
Joe has made new friends since he started experiencing psychosis. His friends are really important and he says he’d be dead without them.
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Yeah.
Yeah. But. Yeah.
Okay. And how important has that support from friends been?
I would be dead if I didn't have them.
Wow.
Just as a fact, as an objective fact.
Okay. So, knowing that they're there.
Yeah.
Joe told someone at work who he liked that he hears voices, and they made sure support was available while he was on his shifts in a cancer care unit. He thinks it’s good to be “brutally honest” rather than letting them find out some other way.
Joe told someone at work who he liked that he hears voices, and they made sure support was available while he was on his shifts in a cancer care unit. He thinks it’s good to be “brutally honest” rather than letting them find out some other way.
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Just told them.
So, verbally?
Yeah. I just
At the beginning, or?
Yeah, I went and spoke to someone, because - Again, it's - If [sigh]. And this – I, and I realise the irony of this word, this does sound a bit paranoid. Saying if you - if you go into a job and say "I hear voices sometimes, I might have to take a day off with it occasionally,"
Right.
People are going to probably have a lot less of a problem with it, than if like someone finds out from something you've put on the internet –
Okay.
And say - and the rumour goes round the office and everyone says [whispering – “Did you hear about [so and so]?”]. Yeah. And, which I think possibly people are - might do, so.
Yeah. Although, yeah, they say - well, a lot of people hear voices [laugh].
Yeah.
But, yeah.
But you know, people hate - people hate about other people the things they see in themselves, so.
Right, okay. So, did you tell HR then, or? I mean, did you do it in a formal kind of way?
No, I just did it - went and told someone.
A manager or someone?
Yeah, someone I actually liked and trusted. And said "Okay, well -." And the same thing happened with the current job. I told someone, and they said "Okay, well these people need to know, because there need to be these people on the shift at one time." Yeah.
Yeah. Okay. Cool. So is that something you'd advise to other people? That it's worth letting your work know, and?
I think if you can deal with the fact that people know. I think one of the biggest problems with this is people somehow feel ashamed. I think it's with every medical condition, not just mental stuff. People think they're going to be - people think people [sigh] - People think other people are going to think they're weaker for it. When literally everyone on earth has something. And – If, if you, if you can get to a place in your own head where you can deal with people knowing, honesty is the best policy I think. Because if you are - like me - quite aggressively brutally honest about it, then people are not going to think it's as weird as TV would have them believe.
When Joe had no energy or no time to prepare food he would spend more money to buy something ready made.
When Joe had no energy or no time to prepare food he would spend more money to buy something ready made.
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Wow.
So if I am feeling crappy and don't have the energy to make lunch in the morning, I either have to - Well, I'll have to buy lunch at work. Which costs money. But if I spend time and energy making food, I won't have to spend as much money. It's about balancing those three. Which I'm trying to get better at [laugh].
Mmm. Sounds amazing [laugh].
[sigh] Christ [laugh]. No [laugh]. NHS doesn't pay as well as you’d like.
Yeah.
[sigh] But yeah, I've been trying to - Basically I'm trying to save up to do a Masters in theatre. Which will be a long way off.
Okay.
Because, yeah. It's another reason why I'm trying to look for a better job, because I need money [sigh]. It's also. Yeah. I think with any kind of pressure you have, it will increase the burden or the load on energy or time.
Joe has found it’s important to limit the amount of negative things he is exposed to in a day.
Joe has found it’s important to limit the amount of negative things he is exposed to in a day.
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Oh, I love that idea. That's brilliant [laugh].
Yeah, it's - Yeah, it is really good.
Yeah.
I'm glad I found out. Because at some point, you've just got to say 'I'm not dealing with this'. Like there was a TV show that one of my housemates really likes, which is - I don't know - am I allowed talking about names of TV shows?
Yeah, yeah - that's fine.
One of my housemates really likes The Walking Dead.
Okay.
And there was a particular episode this season, this year, that happened, where awful things happened to people. And I got about two and a half minutes into that episode, and my misery quote was just 'nah, I'm going'. And I just went and like - I think I just went and played Tetris on the internet or something. I thought I'm not, I'm not watching this, I don't, I don’t need this much awful in my life, I can just go and do fun stuff. And I think that is - that rule is a big part of how I'm, how I manage to cope. Yeah.
I love it. I love that, misery quota.
Yeah. Because once your quote is full - it’s like - Because I did a biology degree, a lot of stuff about fish stocks. Yeah, if you over-fish, eventually you're going to be left with lots of deep angry waters full of no calm fish. But at some point you just have to switch off. And that's how I deal with life.
Cool. That's awesome. And you mentioned meditation and mindfulness. What does that kind of look like? Or what would you tell people about that?
I tell them it works. Because it took a really long time for me to find something that actually worked.
After four people he cared about died over one summer Joe started having hallucinations in which people he cares about are going to be hurt. He thinks there’s a part of his brain that can’t say “I’m worried” that is producing the voices and hallucinations
After four people he cared about died over one summer Joe started having hallucinations in which people he cares about are going to be hurt. He thinks there’s a part of his brain that can’t say “I’m worried” that is producing the voices and hallucinations
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So, yeah. I think most of my hallucinations, at least when they get bad, when they're violent - which I haven't had them in quite a while now revolve around people I care about being hurt. And I think that's probably- As a root of that, that's the bit of my brain that worries about this happening to other people doesn't really know how to communicate that I - doesn't know how to say the words "I'm worried. " And so it just says, "This is what's going to happen, you should deal with that so it doesn't happen."
Joe wants to do a Masters degree in theatre and says the only thing holding him back is the cost of funding the course. Although his experiences of psychosis will “always be there” he isn’t going to let it deter him.
Joe wants to do a Masters degree in theatre and says the only thing holding him back is the cost of funding the course. Although his experiences of psychosis will “always be there” he isn’t going to let it deter him.
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Yeah. Well, Masters or any theatre school that will take me at all [laugh].
Yeah. So you're feeling sort of confident about that, and about managing -
I think, I think I'm good enough and I think I'm sane enough. I just don't know if I'm rich enough. Genuinely. I think the cheapest one I've found is like thirty one grand.
Right. Not per year, hopefully?
No, just total for a two year thing. But I'm - I do not have that many pennies. And I do not have a big fraction of that many pennies. So I need to find a job that pays more.
Yeah. But you don't - It sounds like you don't see the experiences that you've had as kind of holding you back in any way?
I think they're a part of me. They're always going to be there, and I'm always going to have the memories of them, and I'm always going to have the active effects of them at any one time. But Anthony Hopkins was schizophrenic. You know, Hannibal Lecter. He's a good actor.