Rose Ward, Horsham
Oral history interview with Neal Pearce 8th July 2013, covering time spent in Rose Ward, Horsham, 1996 to the present. Darren Watkins, who spent time in Langley Green Hospital, joins the conversation later in the interview. Darren had been on the fringes of the group at Park Barn for a couple of weeks and displayed quite high anxiety and inability to remain still, but in this case he was very interested in what Neal was saying.
Interview by Jon Potter, with volunteer Nicky Lambie also present.Jon
I am interviewing Neal Pearce, and my name is Jon Potter and we are outside Park Barn in Horsham in the sunshine. One of the loveliest days of the year. And we are going to talk about time spent in Rose Ward in Horsham
Neal
I'm not, are you? You are – you are telling me about when you were there, no, no. Jon, you are going to be okay, look, it's part of your delusional frame, you know, but you'll get over this, please, it's all right.
Jon
You will also have an understanding of the delusional
Neal
Oh yes, the whole spectrum, yes. I understand intimately the topography of madness, and the implications of, and the, um, entire business. Jon we were talking a bit earlier off mike, about the feeling of being encased in a crystal box
Neal
No no no, a quartz crystal cell, a clear quartz crystal cell, actually, that's exactly what it is, yeah. Because really, it's so isolating because very few, not many people can understand where you are coming from really, and actually lets face it doctors are really, in this picture of things, they are merely map readers in an office, as opposed, to the adventurers into the topography of psychosis and madness. I mean it is as simple as that. They have never been there, they are never going to go there and they can only follow the cues and the plot that are on these maps and say ah, this looks like this place, I recognise yes this symptom. They haven't got a clue otherwise, and that's part of the frustration, you know, trying to make them see that actually, it isn't as simple as being a totally nuts or, you know, it's not as simple as that.
Jon
On occasions you have been told that you are not ill at all, that you are being delusional about your own condition.
Neal
Well I often thought that that was the case, that they thought it was some, but then that technically can't, that can't work, that would be a weird loop that couldn't work, because you know, going back now 14 years ago, just when I came out of hospital, I was writing, keeping notes, in a journal and I remember, I have actually got that with me today. It says on it something about me being Baron von Munchhausen, and of course Munchausen syndrome is the thing where you basically, basically you invent some sort of amazingly complex reason for what's wrong with you and actually there is nothing wrong with you at all.
And I started to think that. I thought that could be the only possible reason, because nobody else believed there was something wrong with me, but clearly there is, and there was, and always has been.
You see most people would explode in a very very dangerous way, you know, but for me I just am able to dispel and disperse a lot of that with humour. Again which works against me because people just think he's fine, Neal's fine, no he was fine today what are you talking about, having a laugh, oh no no no. Neal, you are fine, stop this, it's just, I don't know what you are talking about, there's not much wrong with you, get on with it. And I don't know how long, how many years I have been through that, you know. But fortunately, fortunately this year things started changing in terms of getting some proper assessment time from a professional who unfortunately retired, and now basically, I have disappeared completely off the radar again, I don't think anything has been actioned what she said, not a word of it. Not as if anything even existed that I spoke to her about, endless nights driving myself even more ill, writing and forcing myself to stay awake, to write and communicate, and I may as well have not done it, because nobody, this new psychiatrist has said nothing about all this that was written.
Again, it's like being in a huge labyrinth, which is actually a quartz crystal cell really. I see the labyrinth though as much more like the labyrinth of the mind itself but linking in with the, universe. Linking in with the idea of the universe, the outer universe, the inner and outer universe, like the merkaba star, all of this image here I have of the Solomon's seal (points to T-shirt). You know, this sort of, what would you call it, not a metaphor, a visual metaphor, or a, yeah, a symbol, yeah. Of the message on here, says stars within stars within stars, or technically you could have, expanding outwards stars within stars, or stars going in, so you have got stars in either direction, outwards infinitely and inwards infinitesimally.
What were you saying about Rose Ward anyway? (Laughs)
Jon
Just a second, what date, Rose Ward?
Neal
It was March 6, 1999 until June 6, 1999. It was three months, yeah
Jon
Three months, spring time, and did that care effect any change in you?
Neal
Um, no it didn't. No because they really didn't understand the cause of my illness at all. Partly I suppose because I was not really able to properly communicate mainly because I didn't feel that they were connected to understanding, basically. It was a feeling of them and us, you know and they said have some ECT, and I said what, before breakfast? Is that on top of a full stomach, or after, no no… I said yes please, I thought give it a go you know what I mean, I didn't give a shit to be honest with you, and yeah so I had some of that, I'll have some of that, I had some of that, about eight goes or something, I suppose it was a bit like a rollercoaster or something, you put something in the brain, stir things up a bit, a bit primitive I suspect. But it would help some people. All it did for me is really was trigger me more quickly out and into a high, a high animated state
Jon
So what was your diagnosis?
Neal
Well in there, it was psychotic depression, they weren't properly labelling anything
Jon
What do you believe your diagnosis now to be?
Neal
Well, when I was seeing Caroline Chandler, middle of March this year to, till May of this year, she wrote in her report that she was almost 100% certain that it is actually a schizo effective disorder which is a combination of a fusion of sort of bipolar, in me bipolar symptoms with some of the schizophrenic symptoms as well. So… bastard thing is, you see, that I had actually been telling them right from the start, when I was first getting help in 1998, just after I saw my GP, and I started seeing Dr Powell. Almost within, yeah I started communicating and saying look, I'll be honest with you, this is, this is I have had certain schizophrenic symptoms since Christ knows, a long long time. And of course it's you know oh yeah, but very quickly she was on the case and she thought, oh shit, he does actually know what he is talking about here, so then things started moving. The disaster for me in terms of care was that they made an astonishing cock up which they don't do now which is they, she started giving this medication, which was specifically, which was saying it was quite specifically for acute and chronic schizophrenic illness, so of course, without them actually saying Oh Neal, by the way we are following this line, we do suspect this, and they wouldn't tell me a bastard thing, you can imagine what that is doing to my head, having known about these symptoms for, since I was 13 actually, that is like a bomb actually, slow bomb, and that is how I ended up in hospital.
Because I went back to work and I had to come to terms with some things that had led me to being on this medication, which was something that a colleague had said to me, so you see all this is playing on my mind so I ended up in hospital, anyway, so I had three months in Rose Ward, was discharged, fortunately kept writing the journal because had I not kept writing the journal again, they would not even have noticed that there was anything wrong. To be quite frank I was around the day hospital, in the day hospital at the time not a single person had, I had nurses saying, and I had professionals, several professionals, a doctor even said to me you have not got bipolar, you… I mean I felt like I was dying inside. It was horrendous.
Jon
And that's the image of the crystal, not being able to reach
Neal
Yeah, unable to reach out and say listen, for fuck sake, but fortunately I had there, in my hand, several of those journals where I had just, day by day, been recording my thoughts. Now you can't hide from your thoughts, those things are clear and anybody can see if there has been a change in your thought pattern, or ideas, or wild ideas. It's all there, you know, once they saw that then, slowly, they started to question and they would just on the verge of this? Is it bipolar, is it schizoaffective disorder, but it was only in the, I found it eventually in my files a few years later, a tiny little entry, sketched entry, Neal wants a diagnosis, is it bipolar, is it, and that's why it was all lost. Oh I haven't suffered for the medication, useless stuff to be honest with you, dangerous stuff, there are people even, and they are not crackpots, who suggest that in fact it's the medications that are causing a certain degree of brain degeneration and shrinkage, not the illness.
Jon
Recently I know that you have been looking at the importance of diet and nutrition.
Neal
Yeah, I have. I definitely have been doing that, I need to investigate that, but I need to obviously get the services, somebody, nutritionist that we may be able to find who knows a bit about that, but obviously it's not rocket science in in that all of us know that what you put in has got to impact on the, I mean if you sat there just eating sweets and sugar, your brain isn't going to like that, and nor is your body. But if you have a reasonably good balance, you have certain foods that would help to balance the function of, I suspect the function of histamine, and how the levels are fluctuating in the day and interplaying with brain function, histamine has a neurotransmittal function, as well as in the gut, and an allergy, allergic reaction, it's got four receptors in the body for a start, for key receptors, they don't understand it all.
Jon
So your view now is that, that histamine, and control of histamine is more important than any drug that you have been given throughout your history of mental health care?
Neal
Yeah, I think, I do think, it's not all crackpot stuff, you do get some fringe stuff, you wouldn't be able to find all this information if it wasn't, if there wasn't something to it, you know it's not just somebody saying, and it's not pseudoscience, it's a fact that 35 percent of people who are bipolar, are histadelic, I think that's the low, or dysfunctional histamine level the function is generally on the low side and the same, actually 50%, 35% bipolar sufferers and 50% of people with schizophrenia are having that, they show this in their histamine function.
I'll tell you now my GP, you know I didn't expect him to say oh yes we'll look at that, no, just say no, nuts, nuts again, oh here we go, and he just said to me, he said look, I'll be frank, I have never in 20 years of practice, done any blood test involving histamine or, especially not relating to mental illness. He said we are not going to… I can't do that, it's not part of the practice, I can't. So, we drifted again Jon…
Jon
No we're not, in my view we have covered your time in Rose Ward and in effect I am not going to ask you an awful lot about Rose Ward because actually it's a fairly insignificant episode where not much progress was made or not much happened, in a sense which is very valid for our research.
Neal
The only thing I would say is that, I will say this about Rose Ward is that, it took me a bit of time to, to kind of emerge, I was basically in, they had dormitories really, you had beds and that, I just didn't really do much at all, and then eventually after a time probably after, I think what it must have done, they must have taken me off of the antipsychotic because the thing about antipsychotics is that they keep you docile, and this is what they like, I'm not saying it's like deliberate, it's just that it's convenient for the staff and all that that you are much more docile and not gonna kick off and, you know, I would say that you are in a sense shut down shut up, shut down and shut away. So it's like that, and um, so I had the ECT, I started to I suppose feel positive more much more positive and then I started talking to other patients and interacting more and, yeah it was, I thought it was quite a pleasant place, I always found hospitals very pleasant, I was quite surprised that people would say ah yes but you wouldn't want to be there.
Jon
Did you still feel that there was some spiritual and emotional support?
Neal
Um, I am trying to think.
Jon
Even if that came from other patients
Neal
That's exactly what I was going to say, there is that, eventually, in truth in anything you do in your entire life anybody, if you are actually, you realise that you are putting, by putting something of a spark of yourself out there, spiritual or whatever it is, whatever you want to call it, something is reflected basically. So the more you can find in yourself to get out and to express and that liveliness and whatever it is or, support for somebody else, it comes back to you. It always comes back to you. So in that respect you are going to feel better…
Jon
Did you get any support from staff or doctors
Neal
Right um, not really no, no, no that was strange actually
Jon
How did you come to get out of Rose Ward
Neal
Right, well basically they want you out as soon as you seem to be, yeah, doing all the right which is sensible because it doesn't do you any good to keep staying there if you, because you will end up, being helpful there for God's sake, helping patients, they don't want you doing that, for God's sake what was that all about, we do this, destroy them, no no
Jon
Did you have a role helping others, do you think?
Neal
I'm trying to think who was there… The only person who I know was somebody Tom knows actually and that was Ben Barton. He was there while I was there for a while, who else was there… no I didn't really, I think the transition came the transformation started to occur when I then moved from there to the day hospital I suppose, downstairs, um
Jon
So you are attending Rose Ward as a day, as an outpatient after that
Neal
Right, day hospital yeah, then the key thing part of the transformation process starting was attending Park Haven which is just over the road from us, the end, I think it was about October 99, or November, something like that, I started going there. That's when I started to see that actually my view of everything, people generally, was narrower, in thinking that, like we all do a bit, I suppose, which is that other people, you know who are perhaps not on the same wavelength.
And then you suddenly realise that actually the human mind is so vastly complicated and, it's got so many qualities, people have got so many qualities that again, as long as you are putting something out there, and listening, and there is some level of interaction there will always be um, something beneficial to be gained from talking to anybody or something to be learnt from talking to anybody. And I found that right through, from neighbours of mine that other people would say, you don't want to talk to so and so do you, bloody strange, look, only people with learning difficulties and so on, most incredible minds, incredible minds, stunning detail and observation, amazing, but…
Jon
That's probably your creative artist speaking there
Neal
But prior to that you see, going back some years, I would almost have been saying, yeah I know what you mean, I can't see the point in talking to those people because what could they offer me. And suddenly all that went, I lost all that and realised that the spectrum is so, so different and vast that you can't, nobody who is alive could fail to have some insights and sharpness of degrees of thinking even if they seem to be on a totally another planet, you know.
Nicky
When you were, in hospital apart from being given ECT and medication what did you do with yourself there, things that could occupy you, was there any therapy or did you just sit there and talk and not do a lot?
Neal
Well I did start to do some drawing I decided to do some sort of caricature type things of some of the patients and things. Trying to think what else I was doing, I had tried, I had tried reading a book and… I found it much more beneficial to talk, to try and sort of communicate with other patients and, I don't think there was a lot of therapeutic activity…
Darren
I think it's a brilliant opportunity to interact, it is, you are sitting there, you haven't got nothing to do, in hospital that is, and it gives people more, and I think when people go into hospital all guards are dropped, inhibitions are gone, people are more likely, literally seven or 8 out of 10, you know, more likely to open up because there is nothing else left you know, it's like inhibitions are gone, so relationships can start really quickly, as in friendships, start quite quickly, you only need to be social
Jon
Do you think that might be because people are quite close to the bottom, quite low
Darren
Yeah yeah, they are quite close to the bottom which makes them lose the inhibition. I haven't got nothing else left so so I'm going to, it's a brilliant combination, you have got nothing else left, like you said the bottom, and I'm bored, you know.
Jon
And maybe you are discovering things that are new
Darren
I don't exactly know what them things are
Jon
Well sometimes people say that they make discoveries when they, transitions at the point when they are at their lowest
Darren
Yet in weakness there is strength, yeah because you have always got to be honest with yourself, admit a problem, that's the one way, the only way you open a gate to a problem. Be honest, so what he was saying, definitely art and occupational therapy is definitely a positive creative outlet and I think it's quite, it's a good thing because like you were saying you don't want to bury yourself in a book do you.
You have got stuff going on, regardless of what it is, you are in there for a significant reason, the majority of people, I am not going to slag off everybody, but the majority of people find them quite hard, so you just put pen to paper and the magic just happens honestly, so relating back to what, the caricatures, you could find a transformation within your art and discovery, or if it is a good enough hospital you could find a transformation within a new activity or skill like badminton, table tennis. I rediscovered my skill at Badminton, and I happened to be the best in the whole hospital, I worked my way up over the course of months but I had then generated it and I happened to be absolutely amazing now.
Jon
And what hospital was that?
Darren
Langley Green, 2008
Neal
Yeah, you touched on something there about the weak strong thing, now this is the critical thing that people don't appreciate which is that in fact um, the strongest things are only strong because they have an inbuilt part which is weaker, and strong is only strong, like a tree for instance, or bones, I mean look at the holes in bones, this is why they are strong you see, and also, and especially something like water, you think how you get a drop of water, how weak that is, just like there's nothing there, you put all that together, the strength, the power in water,
Darren
Brilliant analogy
Neal
It's awesome, and all that stuff comes from a book written 2 and a half, no 4000 years ago, in China, you know that's all in books, Tao teaching, there is an incredible piece of poetry, spiritual writing, which is not heavy.
Jon
And one thing I have noticed when talking to people is how destructive fear can be and I just think that maybe when you get to the low points or when you get ill it's very wrapped up with fear which can bring weakness. I wonder if you could talk a little bit about fear and overcoming fear.
Neal
Ah fear, it's a difficult one for me I tell you. Shall I tell you why? Because I become almost completely fearless of everything. I have never, I have no fear of death, I have no fear of, nothing. I feel almost, it's not even superhuman, it's so, invulnerable. Of course I know that in terms of my terrestrial presence, my being is very vulnerable obviously, but the power of believing in my strengths of the higher spirit of my being… I'm not, I am indestructible in that sense
Jon
You are not affected by fear
Neal
No, so what that means is, I used the pseudonym, not pseudonym really, label: Invictas Vir , which is the unbeaten one in Latin, because actually that empowers me as well, what it means is that I just keep that flexing, I get to the point where I want to explode or break or smash and then I just keep somehow moving back from that say like the thing that will not break, the reed in the wind that will not break.
Jon
As a last question, looking forward, what do you see?
Darren
It sounds like there's a lot of hope, he's got a lot of hope
Neal
That's a… I wish I knew the answer to that one, well what do I see as hope, there must be some hope.
Darren
There definitely sounds like there is a lot
Jon
I know that we have talked about a very exciting, exciting possibilities around nutrition and histamine, possibly something that might positively affect your chemical make up
Neal
Yes exactly, yes taking charge of that as you said, basically taking charge of your care in terms of, you know, and sadly the services are much more concerned with, focusing attention on those who are wilfully working against their treatment.
Darren
I think it has got to a sad state of affairs where they are trying to all look out for themselves in a legal term, the ones that don't want it, I think they could be liable
Neal
The ones that don't want it, they will throw everything at those people to get…correct them, they will get every last piece of help and service, everything. Anybody who dares to say I am not getting help, I need some help I am trying to help other people you are not helping me to help other people, and serve other people, what are you talking about, you know no sorry we are not helping you with that.
Darren
And when you do get that treatment, its few and far between, but I can tell you, you look just from presentation, you look quite compassionate and patient, like a quiet and compassionate man, and that's essential because half of them are doing it for their own self worth, their image they don't want to commit and they don't want to put empathy into the role, you know, and the ones that do are pretty few and far between.
Neal
It's not entirely their fault because the resources are crap from central government aren't they, it's all been closed, virtually shutting down, as far as…
Darren
It's almost like if you are willing to ask for it that's kind of a mark that you are at least 10% okay. You know, you have got to be rock bottom. It does come to resources, I am talking about one particular point, and it is not a completely sacked off industry, they are trying their best but besides the point
Neal
Inevitably with anybody who is having to struggle with low resources and money, inevitably they are going to be, you know, getting jaded and pissed off, when people start going in and complaining and shouting and all of this. They are going to close a bit aren't they.
Darren
They have already started closing, they have got a lockdown on the door.
Neal
Yeah I know, at the entrance to New Park House here, there is a coded, and a camera, you have to report in before you can get in, they won't open the doors for you basically until
Jon
And that's for an outpatient's appointment
Neal
Yeah. Which is not all that helpful if somebody is really paranoid or something, it's like, hang on a minute, do you need my iris recognition or my fingerprint you know, it's a bit disturbing
Darren
And half the time most mental health patients won't want to admit they are experiencing symptoms because they think it's a mark
Neal
They'll just stick them in hospital or something, or they're going to say you are violent, or say stop raising your voice, keep it down, it's crazy
Darren
In the journey to recovery most patients will think, will feel they are weighed down with their problem, they think it's a mark, they are put in a different bracket, you know so they desperately attempt to make themselves normal and in that desperate attempt their problems become normality, and when they are experiencing normality problems, for a couple of months, it will quite happily get buried under the carpet, and then when it's time to explain it, in my opinion, the psychologist is part of the, to gain trust and to ask technique questions to get him to open up without even knowing it. You know so my mate, one of my friends has been poorly treated because he didn't want to explain his symptoms because he didn't feel comfortable and literally if you don't explain your symptoms you haven't got no problem. And they are experiencing real problems in the community
Neal
But, what they are not taking into account is that the function of his brain may not be allowing him to either feel or fully express that. That's what's not taken into account by these people unfortunately who don't understand that because they are not experiencing that as a, they have not experienced that themselves. They don't understand it.
Jon
I'm going to bring it to a close here, many thanks both of you, any very last thoughts?
Darren
Last thoughts, the definition, in my opinion of psychologists and doctors, whoever should automatically gain the respect, trust of the client and they should use techniques to get, to get him to envour what they are really feeling and then make the interpretation
Neal
You have got to have trust and if you don't have trust… I have been, I won't go on but I have been, for instance, I think it was a couple of years ago, I was in a state, I went to see a duty CPN, again somebody who didn't know me from Adam, usual problem, he sat there, he asked me the daftest, normal sort of questions like are you sleeping, are you eating, na, na, all that bollocks. Anyway, old textbook, useless to anybody and I said look I've got got this I said look I have written something I've got it typed here, gave it to him, he quickly read it and handed it back and he said okay, yeah. I said have you actually read that? He said yes of course I have, I just read it, I said are you not going to ask me any questions about it then? He said no no no, I've assessed you. I said you've assessed me? And then I started swearing, not badly, I said what the fuck are you talking about and he said ah, I have to warn you he said we do have a dignity at work policy here. He said yes, unfortunately if you do continue I must warn you that I will terminate this assessment. I said you fucking what, no he said I'm sorry that's it. Now some people would have attacked him and put him to the ground, to be honest with you, after that, because I was not well at all and the bloody idiot was actually dismissing me without asking me any questions
Darren
And automatically the person that helps is against you
Jon
Many thanks for your contributions. Thanks.
