This brings to mind a recent report I listened to on NPR about the experiment documented in the book ‘The Three Christs of Ypsilanti’. Most interesting to me was the final part of the report, that told that the main researcher of the project later in life regretted the whole thing.
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Thank you, yes I agree that she would not meet the criteria for sz now. Late last year was a totally different story, we went through the UFOs flying overhead, alien voices, paranoia, people talking to her higher mind, evil ‘debt collectors’ that want her dead, lists of well known politicians who were going to be eliminated if she didn’t contact them immediately to warn them. And so on. She was diagnosed on three separate occasions as sz by three separate psychiatrists because she consistently met the diagnosis criteria for sz. They all told me there was no cure, no hope other than medication and to adjust our lifestyle to accommodate this new behavior. I didn’t want to do that so developed a method to recover from the delusional states and so far it seems to have worked very well, hence why I agree with you.
She has trauma from the past for sure and that is what we are dealing with now. I hadn’t initially considered that the method we created to resolve the delusions would also work for the traumas, but it seems to be working just as well. So yes, now we are not so much dealing with sz as you are, we have moved on to other things that (I believe) the sz grew out of.
Maybe I will regret doing this. Maybe I will regret leaving a six-figure income, comfortable lifestyle and early retirement in order to pursue daydreams. I will definitely regret no longer being part of a team that gets to explore the planets in our solar system, but I won’t regret it as much as if I give in to closed-mindedness. The thing is that I have nothing to lose as I already lost everything when I was fifteen. I died for a bit due to my own actions and was lucky enough to get a second chance. Every day is a bonus from then on. If I don’t follow my heart, no matter how strange the path, I may as well be dead because that is what will happen to us all eventually.
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Interesting - people can listen to it here:
Thank you for the link, very interesting.
I just listened to this - this is truly about using sufferers of schizophrenia as science experiments.
Lately, when my son is very ill, he’s started saying he’s Jesus Christ. He’ll use the initials JHC if he has to initial something, he’ll sign Jesus Christ if he has to sign something, and if someone won’t let him like happened over the weekend, he gets an OCD’ish panic that it has to be fixed.
Like this experiment, he would also come up with more bizarre explanations about why he was Jesus & other people weren’t if he were put in that situation. He’s got an elaborate explanation for everything.
I don’t even try to talk him out of it - I just say that it’s nice he wants to be like Jesus & that means he should only do & think good things. That works sometimes - other times, he’ll talk about he should or will be crucified.
We are not religious people, although we’re not actively against it. When he is well it’s not a topic we discuss too much, and he kind of groups religion in with politicians & the government with the same amount of skepticism and suspicion that a lot of people have. .
The crucification part would be awfully scary:(
I would probably respond the same way you do, I’ve learned it doesn’t do any good to do otherwise with mine. He does respond to the kindness when he is in a good way. That’s my life on his better days when he wants to talk about his delusions. My side of our conversations sounds a lot like the way I would talk to the dementia residents at the skilled nursing facitility my inlaws lived in. Feels quite similar too. “Yes, I did see that news story, yes, you must feel quite upset …”
The confabulation - I always have to look up that word in my notes - the confabulation the scz does, boy does it keep their delusions going. The official definition is (i know you probably know but someone else might not) “the replacement of a gap in a person’s memory by a falsification that they believe to be true”. Basically they can convince themselves of anything and actually believe it even if they need to keep making up new stuff to support it. My son’s scz is happy to provide this service.
Mine is heavy into politics and the delusion that people want to kill him.
I do the same - started treating him as I see people treat dementia patients. It upsets him less than the “I believe you believe it, but I disagree” stance. I only save that for very extreme, dangerous things.
Mine has been into the politics & delusions about being killed too. Early on, he thought that if we left him alone with any doctor they would immediately pull out a gun and shoot him. And, that “they” would bust through our door at home at any minute & kill him.
The paranoia has been a little low recently, but he’s now part of the intensive community treatment program & they like to meet at your home. That is not going over well at all. I knew it wouldn’t & told them. I had actually refused to let them come into the house until he agreed, but let them in this past Friday when he was really, really sick & not responsive - I wanted them to see how sick he could get & how quickly.
Now, he’s all paranoid about the new case manager/therapist who’s trying to build a relationship with him - and he’s not hiding it at all. Since he’s in the hospital right now, it’s good they get to see it, even if it is hard on him.
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I’d have never thought it possible that somebody could say completely false things with total conviction that they are real and no ability to comprehend the difference, and then keep adding to the pile in order to fill in the blanks as required to maintain the story. This is entirely why I got a video camera, some of the things she was saying could have put me in jail for a long time if the police had believed her and it was only my word against hers. I got the word confabulation from the Dr Amador book, he explained things very well I thought.
While my wife wasn’t exactly Jesus, she was some sort of angel or all-knowing godlike figure able to communicate with higher beings with her mind for a while. Or maybe that is what she was in a previous life, I can’t remember exactly now.
Could it be the success you have had is because she had not lost all insight? We have been dealing with this illness for almost 15 years, with a diagnosis for 8…and there have been times early on where we had progress similar to yours. Lately however, no amount of talking works because he has lost all insight that he is ill.
In our family there is a significant history of mental illness and had a great aunt who was probably sz. My son’s father (deceased) was most likely bi polar and my son’s early childhood chaotic. He was also a preemie. He dabbled in drugs in his teens. My point is maybe these were precursors of the illness, maybe not. And maybe depending on the precursor, the treatment methods which work might be different. I would not try to put sz in a box, because it seems to morph into different directions over the course of time. However, I do hope you may have opened a new door of treatment options and wish you all the best.
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I have never seen her have any insight except in the last few weeks where she has started talking in terms of mental illness while in her calm state. I don’t think she would accept that she has/had sz yet but she does now accept that some of her behaviors are due to her childhood trauma. This is a big step forward. Her explanation is still that she met some things which we can’t explain (the debt collectors) and uses religion as an example of things we cannot explain. Obviously those people don’t have mi so therefore neither does she etc.
We spent this morning talking and playing like children in the nearby park. I think she needs to relearn what it is to be a child again. Perhaps we all need that. No shouting and just a couple of small fear responses that lasted only a few seconds which is the best I have ever seen her in the time I have known her. I tested a few of the triggers and got nothing other than a few seconds of her not saying anything. She can now actively reason with and not get caught up in the emotional fear responses which is very exciting.
Another thing I noticed last night is that she didn’t go to the toilet once. Normally three or four times as an automated response. She doesn’t actually need to go, it is usually some sort of dream that scares her. This has been the bane of our holidays, it has always been a dash-between-the-toilets adventure. Hopefully she can get in full control of this basic function soon as we let go more of the fear responses.
Yes, it is definitely a complicated thing. In terms of understanding it, I have modelled it as I would an engineer. When there is no single obvious cause to something we put it as an effect, which means anything could be the cause. Think about a car wreck, pretty much any single-vehicle accident will have a smashed front bumper but the cause could be anything from a flat tire to a drunk driver to somebody asleep at the wheel. None of the causes are related yet they all result in the same thing.
In our case I recognised a connection between her upbringing and the sz behaviors and saw that the concept of control, or more importantly incorrectly transitioned control was likely a part of it. I developed scenarios around how a child would naturally transition control from the parents to the child around age 3-5 and made a plan to try and dismantle what was set up in her subconscious and hopefully rebuild it as a more analytical process. I know that I can’t passively change things so had to take an active approach which led to a few months of being shouted at as the processes set up in her subconscious by her parents ran their course and exhausted themselves. Slowly over time she has managed to resolve those incorrectly handled processes that caused all the emotional responses to run and now she is a much calmer person as a result. I’m not very good at explaining this so sorry if that sounds like gibberish.
I’d expect the concept of incorrectly transitioned control is present in quite a number of sz cases, but nowhere near all of them. It is just one thing of many. A typical scenario might be a dominant controlling mother who helicopter parents her child and never allows the natural progression where the child naturally learns to be confident and in control of his/her self. It isn’t about saying bad parenting, it is about recognising that this is potentially one reason that powers sz and making a plan to deal with it. All parents do the best with what they have, we just don’t understand yet how these complex time-shifted scenarios affect each other.
Interesting point about the concept of incorrectly transitioned control. I recently spoke with my son about the subject of control. He feels as if he has no control over his life and that his delusions/paranoia are because of this lack of control; not that the delusions/paranoia cause the lack of control. Not sure I completely agree, but it is worth exploring because of late we just can’t seem to get the right combo of meds and life has been a wild rollercoaster ride. And your wife is lucky to have you.
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I only began looking at the control aspect after observing a friend’s three year old. She was going through the ‘terrible twos’ age where every attempt to get her to do something resulted in a temper tantrum. From what little I know about children, I believe this is a very normal phase and will pass with time if there is no adverse environment to fix the child’s mind at that time period. In the case of my wife she didn’t make that natural progression due to adverse factors and has been stuck partly in child survival mode ever since.
The other thing I noticed in my friend’s child is the ability to make up stories about things. Very detailed and entertaining stories. Again, a perfectly normal child activity but apply that to an adult who cannot stop making up stories- confabulation and delusion come to mind. So I began to consider that what we were facing is a child stuck back in the past and all we had to do was resolve the things that kept the child active (incorrectly transitioned) and we’d solve the more urgent aspects. So far it seems to have worked, whether it would work for another person I don’t know.
The test phrases I use are (me saying to her) “say I can be controlled”, “say I can be interfered with” etc. If she is unable to unemotionally repeat the words then there is an issue and we delve deeper. Often just me asking is enough to start an hour of shouting. Any words a person can’t unemotionally repeat back indicate something that is stuck in the past it seems. The other one is “do you love me”? Unemotional yes or affirmation means she is in adult mode, angry response or negative means child mode. I tried the first test with a psychiatrist once, she choked, looked embarrassed and quickly changed the topic. Unhandled issues there for sure, even by her own admission.
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Why should ANYONE ever feel comfortable with the phrase, ‘I can be interfered with’? It sounds very controlling of you to expect her to put aside emotions and repeat whatever you tell her to.
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Dr Amador was the first I heard of confabulation. People with mental illness actually believe these thoughts, that’s what makes them mentally ill. As Amador says, you can’t talk people with scz out of a delusion and you can’t make the delusions worse by letting them talk about their delusions.
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I used the “agree to disagree” thing once. When I first read Amador and realized that all my attempts at rationalization were the issue that had made him shut me out. I reopened the subject of whether or not the things he heard were real and told him that since I didn’t really know what the truth was, we should agree to disagree. He was pleased. After that he began talking to me again.
If I used the entire LEAP sequence each time he spoke to me, boy, he would catch on. Listening and repeating back and empathizing is usually as far as we get - when we do talk.
I use the turned body, keeping a distance and not looking into his eyes stuff, all the time.
Did the team see how sick he was on the Friday visit?
Mine just gets the most paranoid about people who are in regularly in close quarters with him. Either living near him or at work. So far he hasn’t mentioned anything paranoid about the new therapist. I have noticed that he rarely gets paranoid around attractive women.
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As soon as I try the I don’t know what the truth is, he shuts me down with, that just means you don’t believe me.
And, sometimes, he’ll ask me to just say I believe him sometimes, even if I don’t, so he can feel better about it.
He catches on to the full LEAP thing too.
It’s easier to just treat it more like the dementia patients while trying not to do anything that makes it worse.
My son used to rarely make eye contact,so now he’s specifically trying to work on that - and he’s doing a great job. So I can’t do that. And, sometimes he gets too close & he doesn’t seem to mind if I’m too close. I don’t think that applies to him.
The team did see how sick he was last Friday. Or, his case manager/therapist did. And, he came to the hospital on Tuesday to see him. However, both visits set off my son’s paranoia (he’s only known this case manager about a month) and now he reminds me to not talk to him, not let him in the house, etc. However, I knew that was going to happen & warned him. He’s still thinking he can bring my son around, and I guess he has lots of experience doing it, so we’ll see. My son can be incredibly stubborn and that has nothing to do with his MI.
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But that is precisely the point of doing this, I’m not asking her to put aside emotion, I’m testing whether there is one attached to the concept or not. She doesn’t have to do anything but her mind will automatically make her do things if it has predetermined connections to the concept. The subconscious can’t tell the difference that I’m not actually controlling her, I’m just asking her to repeat certain words. She doesn’t have to do anything at all and I’m not forcing or controlling her in order to get compliance, it is merely a test to find out whether we need more work on that particular area or not.
The point is that the subconscious can’t tell the difference, it goes automatically into full defense mode on any terms that are predetermined by her past and so we resolve them until there is no automated response. I’d suggest we all have this type of reaction for any concepts that were stressful to us as children, I certainly do, just not this particular one as my parents weren’t the controlling types.
Expecting her to play ‘repeat after me’ and then ‘assessing’ her based on that is controlling.
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ok, sure, thanks for your opinion. I’ll take whatever works.