Good video on youtube

I found this video to be very moving and inspiring. I hope others might enjoy it too. It's by a young man who has recovered from sz - sharing his experience.

I really appreciate this video, costello! I'm going to my first competent psychologist on Monday. So good luck to me!!

Good luck, Shay! Has it only been incompetent psychologists up til now?

Glad you liked the video. I thought it was pretty cool. Wish more people who've recovered from sz would share their stories. I realize it's hard to stand up and say you've had these experiences, but if we don't hear from them it's too easy to start believing the official story that people don't recover.

i used to have a channel on youtube about my experiences for 5 straight years. i had probably about 500 daily returning subscribers and a million views overall. given this this in the early days of youtube 2005-2010. so that was a lot then. people watched me grow up on camera from 15 years old til 20 yrs old. such a long time, 5 years, that my subscribers could even tell when i was slipping.

but one day...i just deleted it out of the blue. everything. every video, the channel, everything...in a paranoid episode.

when i was 20 is when the severe paranoia started hitting me.

costello: Yes! Granted I've only ever had one full visit, with many interspersed mini-encounters... He diagnosed me first visit with OCPD & told me that five months of vivid/unrelenting psychosis was a very typical response to stress. *facepalm*
But yeah, I totally agree... I read this AMAZING book called "the Center Cannot Hold" by this woman Elyn Saks. She was a psychoanalyst & lawyer for years. But very few people know about her long struggle with sz. And even today it affects her, but you'd never know with how well established/stable she is. Reading that book was probably the main thing to motivate me into speeding up the therapy process to intervene early...
Well, that & an increase of my delusions to turn towards injurious lately. Lol

newtus: That's really brave to have been able to keep such a personal channel going for years! Even though you deleted it out of an increase in paranoia, it still says a lot about you.

I love Elyn Saks. She's brilliant. I've read The Center Cannot Hold. I've also sent her emails about my son a couple of times. And she actually responded!

She wrote a book about forced treatment (medication) which my law library owns. She advocates kind of an interesting approach. She says that medication should be forced only at the first psychotic episode (or if the person is a danger to self or others, of course).

Her view seems to be that until the person has experienced medication they can't know what it's like - and they're not thinking clearly enough to make a good decision. After they have tried them, they can decide for themselves if they wish to accept or reject them.

I can see problems with that approach. (What if the medication tried first isn't good for the person in question, for example? Also, medications which are forced on people tend to have different effects than ones that are taken willingly.) Still it's an interesting idea. As a person who has agonized over forcing medication on a loved one who desperately doesn't want to take them, I'm just excited that anyone is trying to think outside the box.

that was interesting, thanks

thank you that means a lot for me to hear that from anyone

Costello: Could you possibly PM me that e-mail address? I've tried using google but none of her information was public. I'd like to ask her something should my appointment backfire! But yeah, I really like the way she views things. She is VERY in touch with what is best for the patient... I had a really huge freakout upon reading her book, though. Her initial experiences almost mimic what I have been going through for the past year! :/

Newtus: It's no problem!

I have sort of a different idea on the forced medication thing.

I think we should essentially 'bribe' non-compliant people with schizophrenia to take their medication. Basically, there should be a program that provides certain financial incentives (like an apartment, free job training or school tuition, and a small stipend for living expenses) in exchange for the person agreeing to take a medication (the choice of medication would be mutually agreed upon by both the patient and the psychiatrist). The terms of the agreement would also involve the patient attending weekly psychiatry, individual counselling, and group counseling appointments. If the patient's symptoms were adequately controlled, the patient would also need to either work (the program would set up the job) or attend job training or schooling. And last stipulation -- the patient would need to volunteer his or her time with organizations that help other people with schizophrenia or psychosis (peer-to-peer mentoring). Participation in the program would be up to the patient, of course.

Obviously, you would need to carefully select applicants for the program, and the program would require a ton of energy and effort from everyone involved, but it could be done. I wonder if something like this exists anywhere?

Costello-- are you familiar with Gail Hornstein's work? the vid above sounds interesting. i will watch it tommorrow. you are right about more people reporting thier experiences of recovery. this will aid in ultimately changing the public perceptions of madness. (specifically schizophrenia)
I still remember the very first time i heard voices. it was over 30years ago.
got a question though ... why doesn't the profession acknowledge recovery when it occurs. They always compare it to diabetes and a lifelong regiment of medication. i hate that.

Anges's Jacket? Yes. She has, I think, two interviews with Will Hall on Madness Radio that I've listened to. I started to read Agnes's Jacket a year or so ago but didn't make it very far. I have so little time to sit with a book that I've taken to using mostly audio books. Unfortunately that limits my "reading" material to what's available at the libraries I frequent, since I can't afford audio books - even used.

I hope you're right. Most people don't seem to think much about sz at all. It's too far beyond their ability to understand. And most people who have sz in their world seem to believe that you just don't recover. I've heard it over and over again... if you "recover" then you must have been misdiagnosed. Or you're really old by the time you recover - like John Nash.

It's the clinician's illusion. If you google it, you'll find lots of info on it. It's common with addictions too.

Here's one blog post on it:

http://www.psychologytoday.com/blog/...utcomes-part-i

http://www.psychologytoday.com/blog/...tcomes-part-ii

I love her story, but if you read her legal scholarship it's astounding. She advocates some of the most restrictive and archaic mental health laws of any legal scholar I've read - so I can't admire her. Like, if you've been through all those experiences yourself, why would you try to make up laws that make your fellow crazies more easily incarcerable?!

I was offered something similar (in the UK) - officially I am still a "non-compliant schizophrenic", even after five years of life success away from psychiatry.

Funny thing is, the minute I stopped taking their drugs, I went from drooling, incompetent schizophrenic to extremely competent interpreter/translator - and within two years I had a law degree from an extremely prestigious university. Psychiatrists in three countries had told me I would never study or work again because of my "illness". They still won't acknowledge my recovery, and I still have social workers coming around to my house to check up on the "non-compliant schizophrenic".

I would agree with you in theory, except the (altogether too many - 15? 20?) psychiatrists I've seen failed to do anything other than find creative ways to forcibly drug me or otherwise pressure me into drugging myself.

Has anybody else seen this series on the New York Times?

http://www.nytimes.com/interactive/s...ed-series.html

The NYT actually does a lot of really great mental health journalism, if I can think of the others I'll post them here also.

I don't have that impression of her. Or maybe the laws are more oppressive here than in the U.K., so she seems less oppressive by comparison? I watched a video with her and Fred Frese - among others. Fred Frese is so much in favor of forced treatment (i.e., medication) that she looks mild sitting next to him. At any rate she's definitely more in favor of choice than he is. He says he's been restrained and forcibly medicated many times and each time, when he came to his senses, he thought, "Thank God someone cared enough!"

Have you read The Center Cannot Hold? This lady tried valiantly to get off meds for years. And she had the money and resources to do it. Her family's well off. In fact that's one criticism I might have of her. She's never had to deal with the mental health system as it exists for most people in this country, because she has the money to avoid the worst of it and select her own doctors.

She also lived in the U.K. for four years, so she experienced both systems. In fact it was when she'd been returned to the U.S. and was in her first year of law school at Yale that she experienced being forcibly hospitalized, restrained, and medicated. She's definitely not in favor of that. She found the experience horrifying.

An interesting, but IMO troubling, part of her story is how her parents responded to a minor experimentation with drugs when she was a teen. They put her in an extremely authoritarian program for hard core drug addicts. I actually found the descriptions of that program to be pretty awful, but she doesn't seem to question it much.

What I do know is the lady is very smart, she wanted very much to be medication free, she had the financial resources to hire the best doctors, and as of 2007 when her autobiography was published she was taking 40 mg of Zyprexa daily which is a huge dose in my view - twice the recommended dose.

When my son was in the state hospital a bit over a year ago, where he'd checked in "voluntarily" (under pressure from the mental health center, largely because he had no where to live at that point - he was extremely psychotic and out of touch with reality), I emailed her because he wanted to check himself out, and neither he nor I could convince them to just let him go. I found her to be sympathetic and understanding. She definitely didn't push the idea that he continue to be hospitalized against his will.

I have a problem with the bribing thing, because I don't see a difference between that and what the mhc here does - which is essentially say, "We'll only provide you with services like housing and talk therapy if you take the meds." It feels like coercion.

There's a homeless guy in my town with sz who's arrested over and over and over. Periodically they do a piece about him in the paper. They always say, "He refuses all offers of help." Well, what he's refusing in reality is the medication. That seems to end all discussion. Don't take the meds, don't get housing. He's just cussed, stubborn.

The city has actually made a couple of laws aimed specifically at him. The latest was something about not sitting on the sidewalk downtown. They just can't make him do what they want him to do. Everyone says he's brilliant, but he's a thorn in the side of people who want him off the street. They just don't know what to do about him.

http://www2.ljworld.com/news/2010/ma...s-jail-system/
http://www2.ljworld.com/videos/2010/may/09/30514/
http://www2.ljworld.com/news/2012/ma...alk-ordinance/

I wish this were my son's story. Every time he stops his meds, he become psychotic again eventually.

Very sad.

I don't know what the laws in the US/California (where she is a legal academic IIRC) are like. Maybe she has changed her stance since I read her scholarship, but the papers and book of hers I read wanted stronger powers for psychiatrists to compel treatment at first psychotic episode.

Yes, I have read it. I'm well impressed by her life story and admire her courage somewhat, I just don't like her legal scholarship. I also agree with you that she is a bit blind to the resources she has had to help her get through this - most of us are not so lucky that we can choose doctors and treatments.

I think she and I have had reasonably similar experiences - psychosis, lots of different drugs, traumatic compulsory treatment in many different countries (for me - US, UK, Canada), even law degrees . It's why I'm surprised and disappointed her legal scholarship advocates for compulsory treatment quite as strongly as it does.
I remember reading in The Centre Cannot Hold about how badly she was traumatised by the restraints; but she still takes medication. And you know, it's weird, but I can see that showing in her legal writing too. She's rather liberal about when meds should be forceable on people, but adamantly opposed to restraints. I'm the opposite - I'm certainly not keen on being physically tied down, but to me it's far better than being chemically restrained the way some of the prescriptions do.
I know it's fanatically hard not to let personal biasses show through when writing about this kind of thing, though.

[QUOTE=costello;2341855]I have a problem with the bribing thing, because I don't see a difference between that and what the mhc here does - which is essentially say, "We'll only provide you with services like housing and talk therapy if you take the meds." It feels like coercion.

The scheme I was in offered treats - things like museum trips, meals out at the pub, gym passes, etc. It was really patronising -- kind of like getting gold stars at school -- and I don't think it was a huge incentive even for people without the kind of resources to afford those things in their own right.

Bejeebers. I never want to believe that it gets that bad; but I know it does.

I am highly psychotic most of the time, I just deal with it without using the meds/services. I know it's not for everyone. And of course I hope your son can find his own way to recovery.

Yes, that was my understanding. The first episode. Her reasoning seems to be that after trying the meds, the person will know whether they want them or not. As I said above, that theory troubles me because, at least in my son's case, he's a different person during an episode. He doesn't seem rational.

I have to admit that I skimmed lots of her book on forced treatment, because she seems to accept the biomedical model completely. I have a huge problem with presenting that hypothesis as fact. It's interesting to me that she takes that view, because she was studying to be a psychoanalyst last time I heard. That confuses me, but maybe I just don't understand psychoanalysis. Maybe talking can cure a medical problem? I really don't understand.

Anyway her first episode proposal is a huge improvement over what we have now. When my son was in his third episode, I kept saying to the mhc, "He doesn't want medication." Their response was that he's not thinking clearly enough to make that decision. To which I responded that he told me during periods when he was thinking clearly, and he doesn't want medication. This falls on deaf ears. They literally talk right over you. They're extremely controlling. The entire mhc is disfunctional in my view.

Then I point out that to keep him on meds, someone will have to stand over him for life and make sure he keeps taking them. Invariably as soon as he's in a situation where he can choose, he quickly stops taking the meds. Are they going to provide that service? Are they going to monitor his med daily.

Always they offer "the shot." Like it's some kind of magic cure. And they always couch it as help for people who "forget" to take their meds. I don't think he's forgetting. He may claim he's forgetting, but I think he's deciding not to take the medication. He doesn't like it, and he doesn't think he needs it.

Aside from the fact that the meds that are available in shot form don't work for him, I'm not willing to force my son to get a shot he doesn't want. Plus that he can opt not to take the shot too. He just wouldn't show up for the appointment.

I talked and talked with the mhc, begging them to provide some kind of treatment which would acknowledge the reality that my son isn't going to stay on meds. He needs to learn to cope without the meds. Right now he's taking the medication, because he's living with me and I insist on it because he punched me in January 2011. It's a safety issue. But it's likely he won't live with me forever. And it's likely he'll outlive me. What happens then? They don't care. They have one trick, and they push it vigorously. Their strategy seems to be to beat his spirit down and force him to accept their view of him.

Here's that program Elyn Saks was in with Fred Frese, btw: http://mindsontheedge.org/watch/fullprogram/ It's kind of long - an hour - and I doubt it covers anything you haven't thought about in detail. I think these are the only two panelists who have experienced psychosis (and forced treatment) themselves. Frese seems to come down hard on the side of forced treatment - citing his own experience. Saks takes a softer approach.

I have the added "problem" of not having had these experiences myself - either the psychosis or the treatment. I've seen it from the outside only. When I see my son in psychosis, it's hard for me to understand why he rejects the meds - which at least give him back some control over his mind. (During his first episode I remember thinking that if he were in his right mind, he would be so embarrassed by the way he was acting. And all of his friends saw him falling apart. He was calling people repeatedly telling them to tell him the truth and asking if they'd seen the videos, etc., etc., etc. People finally started telling him point blank that he sounded "crazy." I wanted so badly to protect him from that.) I've been at this long enough, though, and talked to enough smart people who don't want the meds that I have to accept that there's something here I don't understand.

Sadly my son's biggest fear is that he'll end up like this guy. He said that one day he was downtown, and Simon was yelling, "Does anyone who can hear my voice have a cell phone I can borrow?" over and over. People were standing around watching him. Some people were videotaping him. No one approached him to speak to him.

I suspect my son's psychosis is different from yours. He has less of the hallucinations and more of the confused, delusional, and paranoid thinking.

He doesn't think clearly. People prey on him. He's often confused. He says people have actually told him that they assumed he was retarded when they first met him; eventually it becomes clear he has normal intelligence. And that's what it's like to talk to him. At one moment he's totally not following an extremely simple conversation. The next moment he's saying something so incisive and insightful it just cuts to the heart of the issue under discussion. It's weird. I told him last night I wish I could just open his skull and see if I can reconnect the wires. It's frustrating. Why can't he be sharp all the time?

my mom makes fun of me. says im gonna end up like that.

and your son is a lot like me then.
the psychdocs concentrated on voices with my homididal intent more though. idk why.

That can't be helpful.

Yep. You're similar. An interesting difference is that I don't think he would ever, ever, ever talk to people on a forum like this.

Talking about homicide and suicide really freaks people out. Voices seem to also. It's interesting to me that if a therapist or pdoc can get rid of the hallucinations but leave the patient in profound depression or apathy, they seem to count that as a success.

would he talk to therapists then? and im assuming he talks to you. anyone else?

i cant talk to therapists or psychdocs. reason why i get into hospital. its easier behind this glass screen with a board of typewriter-like letters. dont count on me talk to therapists or psychdocs.

He talks to me and his therapist and his pdoc. He likes talking to me - usually.

He does like his therapist, and some weeks he really looks forward to seeing her. Other weeks he doesn't want to go - says he has nothing to say to her. The coolest thing about his therapist is she's very experienced with psychotic patients, so she understands him. Sometimes he complains bitterly that I don't understand him as well as she does.

His pdoc he sees but doesn't really like. He thinks he's condescending. I went to a lot of effort to find this guy, though. He's a pdoc who's not all about meds and is willing to work with you and try alternatives.