Edward - Interview 10
More about me...
Edward, 59, is a former head teacher who has worked as a shelf stacker in a supermarket since taking early retirement due to ill-health. He was diagnosed with schizophrenia aged 20, and has experienced depression.
Edward describes schizophrenia as a chemical imbalance related to the fight or flight mechanism which affects emotions and perceptions. Edward believes his schizophrenia arose as a result of genetic and environmental factors' Edward's mother had schizophrenia and he was raised by his grandparents. Edward first met his father when he was sent to the UK aged 7. When he was sent to boarding school, Edward felt isolated and like he was being punished.
He returned to Australia aged 20, where he experienced his first episode of psychosis which he believes was triggered by the shock of meeting his mother for the first time combined with the shock of migration. Edward began to doubt his capacity to stay well, leading him to seek help. He voluntarily went into hospital and had electro convulsive therapy which helped, but led to some insignificant memory loss such as his pre-migration farewell party in England. He took medication (Stelazine and Kemadrin) but believes tablets only offer “temporary relief”, unlike talking therapies which move you forward. Edward identifies more with British culture than Australian, and describes finding it difficult to explain his culture to his (Australian) psychiatrist.
Edward took early retirement for health reasons because he was feeling depressed and suicidal. Edward says losing his career and professional identity made him ask “what am I now?” and it has taken him 7 years to re-establish himself. He says his identity was also affected by his migration back to the UK, and this added to his feelings of isolation. Edward has had a very positive experience of mental health services in the UK - feeling understood and believed was crucial. He advises professionals to let people talk and make it clear that they're believed.
Edward urges people to not feel afraid and recommends that they find a psychiatrist they empathise with and can explain things to, listen to their doctors and nurses, exercise, eat a balanced diet, keep in touch with friends, avoid alcohol and perception altering drugs (e.g. cannabis) - Edward does so in order to safeguard his sense of reality. Warning signs for Edward include excessive paranoia, depression, persistent general anxiety, excessive thirst, mixing up words and loss of function. His self-awareness (aided by monitoring his thoughts and progress in a diary) has enabled Edward to avoid another episode of psychosis. However, Edward recognises that when depressed, it's difficult to have enough self-esteem to undertake this “repair job”.
Edward now sees schizophrenia as a kind of gift or “enabling disability” that gives him insight into other people's feelings and situations that others don't have. Although it's taken many years and has been difficult to achieve self-acceptance, Edward is happy and proud to be who he is.
Edward feels people need time to talk and says challenging the patient's delusions may undermine the psychiatrist's authority.
Edward feels people need time to talk and says challenging the patient's delusions may undermine the psychiatrist's authority.
I'd say to the psychiatrists when you're dealing with someone like me, don't argue with the main delusion or the main prevailing delusion talk about something else until the patient has calmed down about that main delusion okay because the people out there in the public, you know, the ones who haven't had the training they'll always confront the main delusion say looks that's not right, you know. Like my son was deluded that you could get online without plugging in the phone and all this sort of thing, you know, because he was looked at the saved images from the, I forget what it's called that file that saves the images of the last website you went to. So you mustn't confront his or mine or anybody else's main delusion, you must steer away from that main delusion and concentrate on other things and let the person talk, okay? That's the first thing I would say and then the second thing is make it clear that you believe what they say, very clearly that you believe what they say because if you show or hint that you don't believe what they say then that's, then you've undermined your own authority in their eyes and therefore that makes the repair process a lot, a lot more difficult and a lot more long term. that's all really.
Edward calls his recovery a "major project"; he says recovery takes a long time but it's worth it.
Edward calls his recovery a "major project"; he says recovery takes a long time but it's worth it.
And I won't say I regret the project, I'm very happy with the outcome but there were times when I wonder whether it would ever end, you know, whether I'd ever get to the fog sort of clearing and the cycle of, you know, okay one week and not so good the next, whether the cycle would ever end and I don't ever sort of get a chance to look at the view. But anyway, I'm looking at the view and it's alright so it was a project and it did last a long time. I wouldn't want, I don't want anyone to think it was easy but then again I don't want anyone to think that it was [intake of breath] too difficult to do. I mean it's a pleasure to do something like that because whoever I, whoever you are, whoever you are. Is that alright?
Yes
Whoever you are you are the beneficiary of your own strategy, you're the beneficiary of your own self help and therefore when you get to the outcome you feel much more edified by it than if it was imposed upon you by your parents or your teachers or somebody else, it's something you've done for yourself and therefore you feel really happy and proud that you've succeeded in well, breaking the code or whatever it is. It's like the enigma code, you know, fiddling around, this way and that way, and yeah it's good I feel glad that I'm able to tell you about it.
Edward says life does get better because having a mental health problem is a 'gift' or an 'enabling disability'.
Edward says life does get better because having a mental health problem is a 'gift' or an 'enabling disability'.
So yes it's a gift as well, so it's an enabling disability. I don't know if I said that in my little, I don't know, but I have written to someone about it describing it as an enabling disability. And really the reason I'm here talking to you now is that I'd like other people whose relatives and friends, or they themselves are very anxious and worried about how it's going to pan out, I'd like them to hear me say this and tell them about this story because life does get better and it is an enabling disability. It never leaves you, it's a sort of a perceptual thing that never leaves you. But it is actually a gift if you can learn about it and manage it and get the best out of yourself. I mean it's no different from what anybody else is trying to do is get the best out of ourselves aren't we so, you know, it's pretty good.
Edward had ECT while he was in hospital and says it was very helpful and the effect on his memory was not too bad.
Edward had ECT while he was in hospital and says it was very helpful and the effect on his memory was not too bad.
And from then on in after I'd, after I was an in-patient for three months and I had electro convulsive therapy, or shock treatment, whatever you want to call it. That seemed to help me greatly, I had three, three treatments a week for three weeks, I had nine treatments altogether and that was a, that was a great gift because all that did was it , it calmed down whatever was bothering me and sort of put it to one side. And at the same time all I, all I forgot, because it does affect your memory, it does affect some parts of your memory, all I forgot was my life in England for the final year before I left back to Australia. So I forgot about all the movies I'd seen and I knew I'd seen them but I couldn't remember the plot and I couldn't remember my farewell party or anything like that. So now I'm back in England, it's wonderful, how everything is sort of vaguely familiar, it's, you know, it's new, at the same time it's new, it's a delight, you know. But anyway so the shock treatment or the ECT was very helpful to me and so I spent three months as an in-patient and then about six months as an out-patient where I used to go back and see the psychiatrist every fortnight and he'd have a look at my medication and there'd be a bit of a chat and there might be some group therapy with some of the other patients, other out-patients. And that seemed to work really well.
Edward would like to see more research into the nature of the chemical make up of cells in the brain - although he believes environmental factors are important too.
Edward would like to see more research into the nature of the chemical make up of cells in the brain - although he believes environmental factors are important too.
Well I mean I think that probably what could be researched a little bit better, but of course they're making big advances all the time and so I could be out of date when I'm saying this, is the nature of the chemical, the chemical make up of certain cells in the brain and, and the make up of certain receptors that take the chemicals, the chemicals out of the brain to the various organs, you know, there's receptors, halfway houses, like the adrenal gland and so forth. I think that if those genetic factors in the cells are studied more, I think they are actually, they can identify schizophrenia now by looking at your cellular structure but I'm not sure whether they can. then that would be a big help but, but we must be very careful not to prejudice our behaviour by such an analysis because it is an analysis of measurement and this illness, or whatever it is has a genetic component and environmental component, and there is nothing to say that there will be an outbreak just because of the genetic component, nothing to say and so therefore these tests and investigations need to be done without prejudice when the results are printed there should be that declaimer at the bottom, you know, be careful it's not a one size fits all experiment that's going to solve everything because unfortunately I have difficulty in explaining this to people as to what schizophrenia is and I'm still not quite clear. I mean I know it is, it is a perceptual thing and there are different extremes of feeling in, in the same circumstances as the rest of the population that can be identified as different in me to the rest of the population.
Edward describes his symptoms, including anxiety, shallow breathing, negative thoughts, feeling sad, powerless, empty and not caring for himself.
Edward describes his symptoms, including anxiety, shallow breathing, negative thoughts, feeling sad, powerless, empty and not caring for himself.
There's some other, there's some other physical signs, there's shallow breathing, you know, that shows the anxiety level up there with the thirst, the shallow breathing and the, and the sentence mixing up, those are the three things that stick, that spring to mind as being danger signals, time to do something.
And what are the symptoms of the depression, can you tell me what, how do you know'?
There's a sort of empty feeling, a very sad empty feeling that won't go away and keeps generating negative thoughts about yourself and the things you've done and the things you might have said and you should have said or you couldn't say and all this sort of thing. So it's a kind of, it's a sad feeling, an intensely sad feeling with regret put in there somewhere and with a powerlessness put in there as well, a disempowerment to change anything for the better, those three ingredients, sadness, disempowerment, what was the other thing I said?
'emptiness.
Emptiness, thank you. Okay, see I can never remember what I said, okay, so emptiness, disempowerment, regret, okay? That's what it's like' Intensely, an intensity too, so that actually it actually gets to the stage where you can't think outside of your head space into the outside world, you know, you can't help anyone else, you can't do anything else, it sort of paralyses you and into lying on the couch all day or shutting the door and not going anywhere all day, and all night and all of the next day. It develops into a paralysis. And a sure sign when someone is getting better is when they start to think about other people and how they're going to fit into the rest of the world and how they're going to help them. another sign of depression from, you know, just looking at people to see that they're feeling depressed is when their self-care skills deteriorate, you know, they don't bother to comb their hair and they don't bothered to shave and the next thing you know they've got a, they've had the same shirt on for a week and all these things suddenly change and deteriorate so their appearance and, and their thought of others, you know, their sense of self in relation to others seems to' Mmm.
Edward had his first experience of psychosis after the "shock" of migrating to Australia and meeting his mother for the first time aged 20.
Edward had his first experience of psychosis after the "shock" of migrating to Australia and meeting his mother for the first time aged 20.
And when I got out there I got to meet my mother didn't I, for the first time, and that was a terrible shock. She wasn't well and we just, there was some kind of toxic communication system where she frightened the living daylights out of me and I frightened the living daylights out of her. Once when she had one of her more lucid moments she said to me, you know, 'What happened to the baby on the boat, I don't even remember, what happened to the baby?' You know, this is on the journey coming out.
I said, 'Look the baby is here, you're talking to the baby, the baby's okay.' You know, but it's just one of those tragic things where she couldn't even remember what was going on. She was conscious of the fact she had a child, that the child had been taken away or whatever, you know, and she'd lost it, so couldn't look after herself or the child. And I, I don't know but the, the, the shock of migration there, because when you're there the first year I didn't understand what people meant when they said what they said, it was a, just because they drive on the left and speak English doesn't mean a thing, you know, it's a huge culture over there to get used to and often people failed to get used to it have to come back here don't they? But of course I had to stay for two years because otherwise I'd have to pay the fare back and I couldn't afford that.
and anyway I had connections there so after a year it was okay but in the first few months after I met my mother that's when I had the first psychosis, after about five months I was not well, just after Christmas, between Christmas and New Year in 1968 I was in, I volunteered, I signed myself in because I know that I wasn't, I was having hallucinations and a terrible anxiety 24/7. I felt anxious the whole time and I didn't know what it was about and I knew that wasn't right. And I'd seen my mother, how sick she was and seen the effect it had on her where you couldn't sort of determine the difference between personality and illness you know so the boundary line was very vague and it was quite scary because I was closely related to her you see and that made me doubt my own capacity to stay well. And as soon as that self doubt seeped into my conscious state of where I was going and where I was headed, where I was headed, I became anxious on the basis of my mother's, you know, outcome.
Edward believes that his mental health problems have a genetic component and an environmental trigger - in his case migration and meeting his mother for the first time.
Edward believes that his mental health problems have a genetic component and an environmental trigger - in his case migration and meeting his mother for the first time.
Yeah I would after seeing my mother, that's, 'til I actually met my mother I wasn't really aware of it at all. I knew that she'd been ill and she'd been, you know, she'd been in a mental hospital but I didn't really, didn't have that sort of , you know, in your face feeling that it gives you when you, when you're related to somebody who's not well. You know, you wonder where the boundaries are going to be and whether you're going to lose your grip straight away, you know, or whether you're going to lose your grip in a week's time or in a year's time. You really do because it's got a genetic component you can see yourself in the other person obviously, if it's your mother or your father you can see yourself in there in their reactions to certain things and thinking oh hang on a minute, you know, I'm sure I've had that, not only that look but the feeling behind the look before now and I didn't realise what it was and I didn't realise how serious it could get, you know. So that's sort of, yeah the genetic component is a very strong governor of the lack of confidence you free about the future that's it.
but the environmental component, I mean I think lots of kids have had a hard time, you know, one way or the other or they've had their parents go to hospital, leave them on their own for longer than they would if they knew about today's findings and, you know, it hasn't caused them to, it hasn't caused them to have schizophrenia so the genetic thing is the main determinant and the environmental things are incidental triggers if you, if you're in that category.
And what have been the environmental triggers for you do you think?
Well I think, I think' the forced migration at an early age, away from the people I considered to be my surrogate parents to people that I'd never met before and not only that it's not just down the road, I could never go back again so I was stuck on another planet, you know. When you're a little child coming to the UK from Australia is like being on Mars and not only that without a friend, without anyone you know. So that environmental trigger was a big one and then after that the migration back to Australia and in meeting your, your mother for the first time. Wow you know that can be, that can go either way can't it? It can be hugs and kisses and tears or it can be, ooh, you know, sort of terribly the opposite, you know, the antithesis of that. And that's what happened in my case so that was a big shock, you know. I'd say environmental factors need to be shocks, they need to be big lifestyle shocks like [intake of breath] losing your job or something, or losing your partner after a long illness or, you know, something like that where you're, it's pretty stressful and, and, and emotionally charging, those would be the sort of typical environmental triggers.
Edward describes his own individual spirituality which helped him to overcome suicidal feelings.
Edward describes his own individual spirituality which helped him to overcome suicidal feelings.
And is that, that's what it does for you then, it's your point of letting go?
It is, it is, it has to be, it has to be, otherwise I'd feel disempowered about the things I couldn't change. It's a, it's a trap if I can't learn to let go and whatever the method I use, is a spiritual method.
And do you have a particular religion that you believe in?
No I haven't been able to do that, I haven't been able to do that. Look I've spent quite a lot of time [four second pause] as an attender at Quaker meetings, I've been to two or three or their enquiries weekends, they've got a special sort of what do you call it a retreat for people who are enquiring about Quakerism, they conduct those in, up in Oxfordshire, I've been to three of those. last one was in 2001 and, 2002 I think and I've been to various Meeting Houses to try and find out which group suits me, I haven't found one. I haven't found one so now I'm not going to bother with that any more because it. They don't quite suit my belief system, I'm just a little bit, most of what they, most of, most of their the Friends they call themselves appeals to me, the way they go about things but there's, there's also that little bit of tribalism in there and that group joining and one group doesn't talk to the other and so
Edward describes the things that help him cope' keeping a diary, avoiding drugs and alcohol, and recognising warning signs.
Edward describes the things that help him cope' keeping a diary, avoiding drugs and alcohol, and recognising warning signs.
So after that I decided okay I spoke to the psychiatrist and he said, 'Well look if you don't have another, a relapse before the age of 25 or so, 24 or 25 you'll be okay because history tell us these psychoses affect people between 16 and 24 mostly. So I was quite confident once I reached, you know, in fact I was waiting for that, you know, day to come and then I thought well okay I'll be alright now. And I just carried on making sure that I didn't take any tablets of any kind or any perception altering drugs like cannabis sativa okay? And there were friends who liked that sort of thing but I kind of shied away from it because I didn't want to lose my sense of reality. It's very important, you know, when you're having these delusions that when you get better you guard your sense of reality as strongly as you can.
Well that's the way that I see it anyway. So, you know, I didn't drink too much alcohol either because when you can, even though I didn't have a relapse as such the illness would, or the condition would tend to result in sort of mild depression and so forth. And I had all the signals, I had all the signals to be avoided in a list, I hadn't written the list down and the signals, the warning signs that I was looking for in myself were excessive paranoia, depression' anxiety state that goes on for too long, non-specific anxiety state. Obviously if you're anxious about an oncoming bus and you're stuck in the middle of a pedestrian crossing that's understandable but, you know, any kind of anxiety state that doesn't have a, an obvious explanation. And the physical things are excessive thirst and mixing up words at the end of sentences and having to repeat them, that's very embarrassing. That's the most demeaning symptom that I can think of, especially being a professional communicator, you know, the thought of going in front of a class and just not being able to say anything properly, you know, but feel that they notice everything. Well they do, but they don't notice it as much as I feel they did, you see. So that was something, so those are the excessive thirst, anxiety state, paranoia and delusions.
(The following section is written only)
And so the diary has helped me calm down in so far as if I've had, say last year I had on 29th June I summarised the previous seven and said, 'Look I've had four bad, four bad days in a row this year.' I go to the diary, look at the same time the previous year and read it and hey, I had five bad days in a row last year at this time of year and it's worked like that all along the line so that I'm able to monitor, prove to myself that life gets better and it does. I know it does because I've just got to read my diary if I'm in any doubt it gets better. And somehow we have to, all of us, it doesn't matter whether we've been ill or not have to try and get this perceptual integrity about living in the present, you know. And hopefully I've at least mastered that by now, you know, or some days perhaps not but, you know, most of the time.
Now I once said to my shrink in Australia, I said, 'Look [my psychiatrist], I know the difference between delusions and reality.' And he said, 'Oh do you,' he said 'what's that?' I said, 'Hindsight' [Laughs] so' [laughs]. I tend to wait for a lot of hindsight to make sure that these delusions are in fact what they are. So I go to a lot more trouble than most people do to examine their delusions, okay? And that takes up quite a lot of time and effort. I keep a diary every day and I have done since, oh 1991, I think when I first separated, before divorce. I keep a diary every day and it's a page to an opening A4 and in it, when I've got the time I usually fill it in you know it's pretty full by the end of the year because even if there are gaps I can come back to the gaps and fill them in with an