Tag Archives: antipsychotic drugs

Abuse, Health, Hospital

My Statement to the Police About July Assault in ER

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Dear Reader,

This is only part of what i have not been able to write about for months. And there is a great deal more. Now that “Mike” is formally being charged with Assault, i feel i can share this much. In the future i will say more. But for now, at least i will share this statement that i wrote for the police, some weeks later, which is only a second statement, as they already had the statement I originally wrote the very day the assault happened.

Alas, I do not have a copy of that statement, which another ER nurse had to transcribe for me as I was not permitted the use of an ink pen at the time. It was also after I had been illegally but forcibly administered IM Haldol, despite the fact that the record itself shows that I was lying on my bed in my room with my headphones on and the lights off. The record also shows that  an order for PRN 4-point restraints was entered into my chart at that same time. And this PRN order was kept there for the entire 8 days that I was held captive in that Emergency Room, a matter that the lawyer’s grievance deals with but for which a mere grievance seems hardly adequate.

Let me start at the sort of beginning, which is to say only that I had been hospitalized by force at R— at the State Hospital Unit there — and I will talk about that experience in a whole different post. But after 6 weeks I was discharged to a step down facility largely because I had so alienated the hospital doctor that he wanted to get rid of me…Let’s face it. I told him each time I saw him, “Get lost, I do not want to talk with you, You are useless!” Needless to say, this did not go over well, useless though he may have been. And though I found the Social Worker very helpful and so too many of the nurses and mental Health workers and the Occupational Therapist was wonderful as well, but ONLY THE DOCTOR mattered. At least in his own mind, and so he arranged to discharge me somewhere I would no longer get under  his skin or on his nerve i.e. anywhere but in his hospital!

That this step down facility had no medication supervision, beyond opening a safe and having a resident take whatever she or he wanted, this mattered little to the doctor, apparently. Despite his insistence that I needed the medications to such an extent that I have been on a so-called ONH or “order of non-hospitalization” for months now, meaning that wherever I am, I can be hospitalized if I do NOT take the meds, as contradictory and gobbledigoookish  as that sounds! SO I was sent off to  R–, Vermont, to await a bed first at Alternatives and then a more or less long term placement at MRR in Brattleboro, where I am today. (Though how I got here was not via that route as it turned out.)

But in R, Vermont, I did not last longer than a week at the step-down facility as I failed to take the meds and I suppose this is why I ended up trying to set my hair on fire, after receiving commands from “on high.” That is also why I was at the ER when what I describe below occurred.

I knew when the staff member left me alone in the ER, after she walked away and left me there, that I was sunk, that I was going to end up back in the hospital, and with that realization, my heart plummeted. I did not want this, I did not want it. I  decided then and there to do all i could to be compliant  with the doctor and the crisis team, even more so than I already had been, which was plenty. I asked if I could take 10mg of Zyprexa. I even suggested it before the Crisis Team could get there. But it did me no good. They took one look at the report from the step-down facility staff member, who told them about how I had waved lit cigarettes near my just-washed hair and singed it, and they decided — in the lingo of Emergency Crisis teams, that I was “a danger to myself” and could not leave and had to be hospitalized against my will. This would not do. I said as much. I said,”I do not want to go to any hospital. I do not do well in hospitals. I want to go back where i was. Please do not make me go to a hospital. I want to leave”. And with that. I got off my gurney, as I recall, and I am sure the hospital chart can correct my memory if faulty for details now, and proceeded to walk slowly towards the door. I walked slowly because I did not want to trigger an assault by the goon squad. And I did not want to scare anyone into thinking I was doing anything besides deliberately and consciously choosing to leave. But as I did so, a man, a nurse, followed me. I walked slowly out the main door, still dressed in hospital pajamas, since where was I going to obtain any clothing? And I took about 10 steps when he yelled at me, “You go any farther and  I am calling the police!”

Now I will let my statement take over the account.

“I want to scream to someone that i saw in the eyes of the nurse who attacked me someone who recognized Satan and that was why he started screaming at me so uncontrollably before i did anything as “Pam” to “deserve it.” Do you understand this? This should have been obvious to anyone watching the video, but i do not yet know where we go off camera…i only know these facts: that he told my body that if it took another step away from the hospital (i had already walked slowly out the main hospital doors) he would call the police. I believe i shrugged and said, “Go ahead and call them.” Then i decided, remembering the Springfield VT police brutal tactics not to trust them in R—– and so i turned around maybe fifteen feet from the double doors deciding to return and proceeded, again slowly, back towards the entryway. It was then that this nurse started to scream at me. i was shocked at this, because i had already reconsidered and was returning under my own steam. i objected to his screaming and i asked him, likely also loudly, why he was screaming at me when i was already complying. He continued screaming even louder and then he grabbed me and bear-hugged me in a suffocating restraint hold that set me off big-time. He is a big man, and i could not get away from him. He dragged me into the hospital lobby, where, desperate for release, i kicked backwards at his shins.

This must be what so enraged him that his reaction was to throw me forcefully to the ground and jump on top of me, mashing my face into the carpet in such a frenzy that i feared he was going to kill me. I could not breathe or even scream for several long seconds as he continued to grind my face into the carpet. I was terrified for my life and did not know when or whether he would stop. Finally –i never knew what made him stop – maybe someone came out of the nearby ER and saw him attacking me? Whatever was the case, he hauled me back to my feet. At this point i was breathless and extremely frightened, but i nevertheless screamed at him in fury, “You rapist!” I may even have screamed, “You fucking rapist!” I really don’t know. I only know “rapist” was the worst thing i could think of to call him as he had violated every ethic of nursing and emergency care-giving possible and as far as i was concerned he had raped me just as completely as any man who violated my sexual parts.

Unfortunately for me, this only served to further inflame a man already too out of control for explanation, except as someone who felt face to face with Satan: his reaction was to haul off and slap Pam’s face, to shut her up, grabbing my mouth so i couldn’t scream that word any longer.

Maybe someone came out and helped her at this point but I do not recall, even though it might have happened. The next thing i remember is screaming from inside my room in the Emergency Department for a long while and when the police officer appeared, begging him to listen to what the nurse had done. He clearly did not believe me. All he did was leave a statement form for me to fill out –i repeatedly informed him that the Emergency Department staff did not permit me access to pens — and he told me i would have to somehow transmit my statement, signed and notarized, to the police station on my own.

In the meantime, i overheard the same nurse, who i believe was called Mike, telling falsehoods about how i had run into traffic while heading towards the train station. I objected loudly and vociferously. All i got for this was to be restrained yet again, this time by the same police officer among others, and despite my repeatedly asking what medical emergency justified it, to be forcibly injected with Haldol, a medication that my Advance Directive — which the ED had noted and logged in that very night– explicitly directs is never to be administered. This same drug was given to me against my will and over my strenuous objections, even though i lay on the bed the whole time. I was not overtly agitated by this time. At no time was i was more than tearful and most certainly never out of control.

I later complained of ribs (left ) pain — from how hard Mike had compressed me either in his restraint hold or when jumping on top of me, and knee abrasions (right) the latter from being dragged on the carpet. i told the ED personnel several times that night and over the next few days i spent in the Emergency Department. They never looked at my ribs or my knee to appraise these injuries, not until a few days later when Dr Sandy C——     ordered x-rays.
Because no one would document these injuries i was forced to photograph them myself in the mirror.

Ribcage bruise a week later

Health, Mental Illness, Torture

Tortured and Thrown into the Hole. A nd Why I tell you: DO NOT APPLY FOR SOCIAL SECURITY DISABILITY PAYMENT

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Ankle swollen and discolored from hours in 4-point punitive restraints the night before discharge/escape
Ankle swollen and discolored from hours in 4-point punitive restraints the night before discharge/escape

IMG_0002IMG_0004

The above is are just some bruises of many I received during my month-long course of “psychiatric treatment” at the Hartford Hospital’s Institute of Living, on the unit called Donnelly 2 South in January through Feb 2013. In  Connecticut, the Institute of Living, first known as the Retreat, and once quite famous as a posh sanatarium for the rich and famous though this is no longer true, was first made famous by  Clifford Beers, I believe, who wrote about similiar torture he underwent there just a hundred years ago in the book, A Mind That Found itself.
 (I WANT TO MAKE IT CLEAR THAT THIS WAS FROM 2013)

After burning my face with cigars and cigarettes, in response to command hallucinations, I spent the last month in Connecticut’s well-known Institute of Living (yeah the dangerous 6th month was JANUARY not February but nobody thought to check my math) being beaten up and trussed like a pig in four-point restraints almost daily for many many hours. Why did they deal me this sort of treatment? Why? Because “You do not follow directions”.

I DID NOT FOLLOW DIRECTIONS so they beat me up (despite my policy of non-resistance) and tied me, shackled me with leather and metal cuffs  to a bed for dozens upon dozens of hours.! Time after time I had to defecate in my own clothing, because they would not even give me bathroom breaks.  Get that? I was disobedient, so they shackled me to a bed as an excuse for treatment!

After this experience, I LOST ALL FAITH in the ability of any institution to do anyone any good who has a mental illness or sickness of the mind, or any emotional disorder or whatever you wish to call it. I GIVE UP! I will kill myself if anyone ever tries to send me back to such a cesspit of a place. I do not care if it is appointed like the Taj Mahal. NO ONE who works there is uncontaminated by the evil infecting such places. I may be the devil but I never wanted to be evil while they are ALL EVIL EVERY SINGLE ONE. I have NEVER been to a hospital where the people are kind and well meaning and where the treatment is actually kind and decent. Once in a while a single person, such as the Middlesex Hospital occupational therapist  Christobelle Payne, may stand out in memory as being a rare human being of warmth and dignity and  caring, but otherwise, they all to a one fail the test of being decent human specimens and all fail royally to be even normally humanly responsive to suffering persons. They are in it for the money and a cushy job, and don’t you forget it if you go into a psycho hospital, DO not expect to get well there. Expect deadening dulling drugs that never worked and the research tells so, and directions (ie ORDERS) that you HAVE To follow or ELSE.

Get out of there as quickly as possible, because your life depends on it. I am serious. DO NOT LINGER expecting care and treatment or to feel better no matter how helpful you might want it to be.

Furthermore. if you are a young person, do not listen to the sweet seductive advice that some may give you that you woul do well to go for “disability” and social security payments. THAT Is a load of total crapola and the worst thing anyone could tell anyone under the age of 40. Too many young people are being 1) told as children that they have Oppositional Defiant Disorder or ADHD, both of which are adults’ and psychiatrists’ ways of saying, “You don’t as we tell you to huh? Okay, then, we will label you mentally ill in retaliation!” But that is not the worst because they then “medicate” you young children or adolescents with Ritalin or SSRIs and if those cause the anticipated problems of irritability and anger management problems, and outburts and moodswings (!!!), then “add on” atypical antipsychotic drugs (and who would not think to themselves, in momentary awe and self-pity, “OOOh, I must really be Mentally Ill if I take an ANTI-PSYCHOTIC drug, right???”)

The thing is, they will justify these drugs with another label, a label imposed because you now have an IATROGENIC or doctor-induced, medication-caused illness,  like some version of “bipolar”, or if they really dislike you, the untreatable Borderline Personality Disorder, which only means largely that you are youngish, female and emotional and angry and don’t shut up when they want you do. (Test: Do they want you in DBT classes? Then you have the BPD diagnosis, trust me. Dialectical behavioral therapy is FOR “borderlines” no matter how hard they argue that it is open all…)

NEITHER of these labels reflect your or anyone else’s REALITY, mind you, they are ONLY labels, and neither Bipolar nor borderline have ever ever been shown to be real bona fide physiological illnesses or even (for all the talk) genetic diseases. What is a “real mental illness” anyway? No one agrees on the diagnosis, in any one person, and no one can find any chemical test or neurotransmitter than it out of balance or even an anatomic difference between the ill and the well. They only have the person’s words and the doctors opinions… If you disagree, prove what you what to argue. Do not tell me, well Manic depression “runs in the family” because that is horseshit. Messiness and not making beds can seem to run in a family, you know why? Because NO ONE breaks the cycle and teaches the kids the value of neatness and making beds every morning. It matter where and how and WITH whom you grow up, and the myths you grow up with matter just as much. The notion that  Manic-depression runs in your family is only that. A MYTH. but that doesn’t mean you cannot induce it or see it and make it real in your kids or yourself if you try hard enough.Lord knows teenaged angst these days is frequently dx’d as bipolar so jump on that bandwagon by bringing your child to a psychiatrist and they will be happy to oblige!

But do not think that your label of “Borderline” is something elevated and “nearly psychotic” as if that itself is anything superior to other MIs. Trust me, when someone else calls you Borderline it is shorthand for MANIPULATIVE, DRAMATIC, attention-seeking, devious, lying…if you like those words, go ahead and claim the diagnosis for yourself, but i doubt you will. So why do you vaunt it, and flaunt it? Do you not understand that the hospital and therapists actually hate your guts? Get a hold of your chart and READ IT. it is YOUR right and it might open your eyes to what those people REALLY think of you…It won’t be pretty or nice at all, but it will be instructive, and maybe you won’t want to be Mentally Ill with Borderline Personality Disorder any longer, hey?

Another few words as to young people going for social Security Diabilty: Someone asked me about this and my response is unequivocal. It is the very same trap that Welfare was for young mothers with too many children years ago…It had positives to it, but it ended up trapping many and many generations in poverty of the most extreme sport for, well, generations. Speaking just for myself, IF anyone had had the time to find out where my talents lay, in art and writing, and had been able to provide the community and home supports for me that I truly needed, rather than funding my rent and hospital stays largely, plus a visiting nurses visit to bring me medications. I might have blossomed and never ended up recurrently in the hospital for decades. I mean this from the depths of my broken heart. I was always an extraordinarily talented and intelligent person, and everyone knew it. At the same time, I had very real problems. But no one ever said, LET’S NOT FOCUS ON YOUR PROBLEMS. LET’S SEE HOW FAR YOUR STRENGTHS CAN TAKE YOU!

You know, I still cannot socialize  or be away from home for long, and I cannot tolerate any 4- hour work day, far less an 8-hour work day…I do not have ordinary or “normal” stamina in any fashion. Narcolepsy is partly to blame and probably the mental issues and whatever else is at fault, I cannot say. But an extreme lack of stamina that eating well and exercise daily does nothing to help is a FACT of my existence. Nevertheless, I do not believe that I had to stay on Disability and “relief” all my life and be a leech on society…No, i just had no one from the ADA or any social services (god forbid a family member or friend) looking at my individual needs and assessing what I could do to earn a living and helping me, in deep and truly helpful way.,..I believe that my life might have been very different and more productive had the AMERICAN system not dumped me onto antipsychotic drugs and social security and essentially thrown me away…

But it will do it to you too, and you are assenting to it, if you go for disability at at young age. DO NOT DO IT. You will NEVER get free from those checks. NO ONE EVER DOES, unless they marry or get rich some other way…It is the worse decision you will ever make. I know that some living situations demand a check for rent, but don’t assent to their demands, make a radical decision to take charge of your own life, CHALLENGE the psychiatrist’s diagnosis. How long have they known you for anyhow???? Challenge the pills, or at least the dosage. DO YOU FUNCTION BETTER NOW???? that is the only question that matters. If not, the pills do not help. PERIOD.  NEVER take any pill on  a “For the rest of my life basis!”

Oh, I am so angry and broken at the moment that I cannot speak more. But if I can later on, I will say more to explain. At the moment, I have to attend to too many PHYSICAL bruises and to find a way back to sanity on my own, having  been driven to the brink of near extinction by one of the best known hospitals in this state. At the moment I am both rigid with rage and so confused and broken that I scarcely know how to continue, or whether I even want to. Why bother? Why bother? How can people be such  monsters, and in such monstrously powerful places and ways. I hurt so deeply and feel I will never trust an single person ever again when they say, “Come let us help you. You need our help.”  YOUR help? Like being raped, I need your F—ing help!

GO jump in a lake of snot is what I should say to all of you so called helpers. I’d rather die. Go F— yourself.

Art, Health

New Art: Doctor Threatens Restraints and Shot of Haldol

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Doctor Threatens Restraints and Shot of Haldol - Painting in acrylics c. 18 by 27 inches
Doctor Threatens Restraints and Shot of Haldol – Painting in acrylics c. 18 by 27 inches

This is a larger size painting than I am used to doing. I usually draw and I am scared of painting. When I have painted I have usually restricted myself to tiny sizes or just portraits. This is my first attempt at a real crowd scene or any scene at all. (I am tempted to redo the foreground doctor, to make him less cartoonish and more realistic, but for now, I will keep him as originally done. However, I don’t like the illustration quality of this painting, and want to learn how to be more painterly, so to speak!)

Health, Truth

What to do, What to do, What to do?!

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WARNING: THIS IS A VERY ANGRY POST. It contains angry swearing language and is “not nice”…If you only want to “like” me then click LIKE without reading, as usual. (You know who you are.) If you want to read what I wrote, then go ahead, but be forewarned: you won’t like what you read.

 

I am in the middle of a move to Vermont, the state of my dreams, the state where I was well for six weeks and where I was happy and in a happy state. Was I in a dream state? Am I in a dream state to think that I can make it there, move there in one piece? And make a new life?

 

Du must dein leben andern…You must change your life. That’s the last line of the most important poem I ever read in my life, “The Archaic Torso of Apollo” by Rainer Maria Rilke, which I read at least 30 years ago, and never forgot. Yet I never changed my life until now. Oh, I have tried, in my way, I have tried. I have tried many times to stop taking my so-called anti-psychotic medications and go it alone, but always informed the relevant medical personnel in my life, with disastrous results. I believe it was the informing that caused the disasters however, NOT the stopping of my meds. Belief, and expectation play a huge role in what happens to people, and when EVERYONE around you anticipates the worst and looks for it, when everyone KNOWs you will become psychotic without the drugs, somehow they make it happen. It happens all  the time, so that even if you wouldn’t become psychotic otherwise, they force it on you, or look so hard for symptoms that they see what might not be there. And then the hospital forces the drugs on you and you react with anger and traumatized combativeness and they react with more force and brutality and it just escalates and everyone tells you you MUST take the meds from now on OR ELSE.

 

But it ain’t true, because the meds are bogus as anyone who has ever been drugged up with Haldol would tell you, if they were honest. Haldol, the doctors’ favorite tranquilizer and “anti-psychotic” drug, does diddly-squat for psychosis. It only drugs you out of your gourd so you shut the fuck up about it. But it doesn’t change a thing inside, it just quiets you down so you don’t make the noise you did, and you submit. You submit and no one gives a shit about what is really going on.

 

Except that I didn’t really quiet down on Haldol, because every time Yale held me down for injections in the ass, I retaliated by stripping my clothing off and shitting on the floor of my non-seclusion seclusion room, and smearing it all over the place. That was my retaliation for their punishing me with a torture drug that did nothing for me only against me. And they knew it perfectly well. So I punished them with my SHIT!

 

Fuck them! Let the aides call me “Pig” and “Swine,” I didn’t care. No one believed me when I told them what that aide was doing. But I got back at him by calling him “rapist” every time he grabbed me to keep me in that room. “Darien, the Rapist!” I’d scream, just to call attention to his physically attacking me. “Rapist!” So he got back at me by muttering,”Pig, swine…” under his breath when no one else could hear him, just so it seemed like I was hallucinating. But I wasn’t. I knew what was what, and I knew what he was doing.

 

Haldol is a shit drug, by the way. It does NOTHING to help anyone but punish them and torture them, but the thing is, it is a model for all the other anti-psychotic drugs. Keep that in mind, because none of the other AP drugs works any better than Haldol and you are fooling yourselves if you think they do. You want to believe the drugs help you, and your belief makes the drugs work. That is all. It is the placebo effect, pure and simple. But the drugs also harm you. Why else would you be obese or tremulous or any of the other detrimental things that have happened since you started taking anti-psychotic drugs? Do you think they are harmless? Do you think that diabetes just happened to you out of the blue? No, the drugs not only offer only a placebo treatment that you could get on your own, but they cause obesity and diabetes as well. And a whole host of other problems.

 

But far be it from me to tell you what to do. I just know that I am not going to continue with this garbage. I will NOT be told by anyone hired by the drug companies and instructed by them as well that I should take these drugs for the rest of my SHORTENED life..BULLSHIT!

 

Look, you do what you want. If you want to live 25 years less  than you would have otherwise, fine. FUCK ME! I don’t give a shit what you do, but I will not lie to myself any longer. These drugs do nothing. They  have never kept me sane or cured my psychotic episodes. They do nothing for me, and they only hurt me. If you were honest with yourself you might admit the same thing.

 

WHATEVER!!!!!!

 

Fuck me. I don’t give a shit. Do whatever suits you, I’m outta here, I’m moving to Vermont and getting off this shit and having a better life than this bullshit in Connecticut. I’m moving on and moving out, and CHANGING MY LIFE. Du must dein Leben andern. You people can go on and take your pills and stay sick and play the good patient and pretend that Haldol and all the other derivative drugs “help” you. I don’t give a good goddam. I won’t live that lie any longer. The drugs are bogus and if you bothered to do your homework and read about them, you would know what I know. And If you were honest about your life you would admit that they do nothing for you too.

 

Go ahead, leave my blog, don’t read what I write any more. I don’t care. I’m sick of popularity contests and “LIKES” by people who don’t bother to read what I write. Don’t LIKE me! I don’t care. You haven’t even read this far anyway. Don’t LIKE me! I don’t give a shit. I’m moving to Vermont.  Connecticut and all of you can go blow.

 

 

(Sorry, but I am sick of BS and I had to get this off my chest. I don’t care who dis-likes me after this blog post. You either want me to speak my truth or you don’t…But I won’t lie any longer or be diplomatic either. Take it or leave it.)

 

 

Abuse, Health, Schizophrenia

Does “January” Have Schizophrenia or Is it Her Family That is Disturbed?

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I first saw videos of January on Youtube years ago, and I was appalled by the inappropriate nature of taping your supposedly disturbed child. I was also skeptical. I felt deeply that the parents had decided to label and encourage Jani to behave/answer questions in “schizophrenic” ways in order to garner publicity. Sorry, but those were my feelings at the time and they are still my feelings though I have not been able to stomach “keeping up with the story” over the years. Frankly, I would not be surprised if this case did not rise to a matter of Munchausen’s by Proxy, though no one is saying any such thing (of course not!)…

 

This article is an important OPEN LETTER  that I just found at BEYOND MEDS:

https://beyondmeds.com/2009/10/18/an-open-letter-to-oprah-regarding-jani-the-seven-yr-old-schizophrenic/

FROM MAD IN AMERICA dot com – January 21,  2013 (I couldn’t find any sharing buttons that would allow me to reblog this but the direct link can be found below)

The Hearing Voices Movement: In Response to a Father – ‘My Daughter, the Schizophrenic’

Jacqui Dillon

January 21, 2013

There was a heart-breaking and disturbing story in this weekend’s Guardian newspaper entitled ‘My Daughter, the Schizophrenic’, (1) which featured edited extracts from a book written by the father of a child called Jani. He describes how Jani is admitted into a psychiatric hospital when she is 5, diagnosed with schizophrenia when she is 6 and by the time she is 7, she has been put on a potent cocktail of psychotropic medications:

”Jani is on three medications: Clozapine, lithium and Thorazine (known in the UK as Largactil). This combination has been the most successful. Are her hallucinations completely gone? No, but as she will tell us, they are not bothering her. It’s like having the TV on in the background, volume turned down, while you’re doing something, and every so often you look up at the screen to see what 400 the cat and other hallucinations are doing. They remain on Jani’s periphery, but she can still function in our common reality.”(2)

This harrowing description exemplifies the worst excesses of responding to a deeply troubled child’s distress as if it were a pathological illness, with the full psychiatric arsenal. What ensues can only be described as an account of psychiatric, human rights abuse.

If only Jani and her family were offered alternative kinds of help such as that developed by Voice Collective, (3) a London-wide project set up to support children and young people who hear, see and sense things others don’t. Voice Collective works with children, young people & families, and with professionals and organisations offering a whole range of services including peer support groups, so young people can meet with other young people with similar experiences, creative workshops, 1-2-1 support around making sense of voices and finding coping strategies, an online support forum. Voice Collective also offers a range of support services to families as well as supporting schools, social services, child and adolescent mental health services and other youth agencies to work with children & young people who have these experiences.

As one parent who has been supported by Voice Collective said:

‘You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”. – (Mother of a 12 year old)

How different things could be for Jani, her family and countless other children and families around the world if there were greater awareness that such humane and healing alternatives exist; approaches which help without doing more harm. (continued below the break)

——————————

(Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon
Jacqui Dillon’s website: http://www.jacquidillon.org
  1. http://www.guardian.co.uk/society/2013/jan/19/my-daughter-the-schizophrenic
  2. January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her, by Michael Schofield, published on 1 February by Hardie Grant Books.
  3. http://www.voicecollective.co.uk/)
 ———————————

Jani and her family originally appeared on the Oprah show in 2009. Many of us within the Hearing Voices Movement were so saddened and disturbed by Jani’s treatment that we wrote an open letter to Oprah Winfrey. Here is the open letter from INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world, reprinted again.

Dear Oprah,

We are writing in response to your programme about “The 7-Year-Old Schizophrenic”, which concerned Jani, a child who hears voices, which was broadcast on the 6th October 2009. We hope to correct the pessimistic picture offered by the mental health professionals featured in your programme, and in the accompanying article on your website. What upset us most and moved us to write to you, is that parents will have been left with the impression that they are powerless to help their children if they hear voices. We are also concerned that the programme gave the impression that children with voices must be treated with medication. We note that the medications mentioned in your programme all have very serious side effects. (For example, antipsychotics such as Haldol cause neuronal loss, block the dopamine pathways in the brain required to processes rewarding stimuli, and carry a high risk of neurological and metabolic side effects such as Parkinsonianism and diabetes. Their effects on the developing brain are largely unknown and, in our view, they should only be given to children as a treatment as absolutely last resort.)

We have been researching and working with adults and children like Jani for the last twenty years, and our work has led us to very different conclusions from those reached by the mental health professionals on your programme. One of our founding members, Dr. Sandra Escher from the Netherlands, has spent the last fifteen years talking to children who hear voices, and to their parents and carers. This work is the most detailed and thorough investigation of children who hear voices carried out to date [1, 2]. The most important findings from recent research on hearing voices are as follows:

Prevalence of Voice Hearing in Adults and Children

Recent large-scale population (epidemiological) studies have shown that about 4-10 % of the adult population hear voices at some time in their lives [3-5]. Only about a third seek assistance from mental health services. Amongst children, the proportion hearing voices may be even higher [6] and, again, only a minority are referred for treatment. Hence, it is wrong to assume that voice hearing is always a pathological condition requiring treatment.

Psychological Mechanisms

Everyone has an inner voice. Psychologists call this phenomenon ‘inner speech’ and it is an important mechanism that we use to regulate our own behaviour (plan what we want to do, direct our own actions). Child psychologists have long understood that this ability begins to develop at about 2-years of age [7, 8]. Hearing voices seems to reflect some kind of differentiation in the mind’s ability to tell the difference between inner speech and the heard speech of other people [9, 10].

Link to Trauma

A common theme in research with both adults and children is the relationship between hearing voices and traumatic experiences. In adults, around 75% begin to hear voices in relationship to a trauma or situations that make them feel powerless [11-13], for example the death of a loved one, divorce, losing a job, failing an exam, or longer lasting traumas such as physical, emotional or sexual abuse. The role of trauma was identified in 85% of the children we have studied, for example being bullied by peers or teachers, or being unable to perform to the required level at school, or being admitted to a hospital because of a physical illness. In short, our research has shown that hearing voices is usually a reaction to a situation or a problem that the child is struggling to cope with.

Voices have a meaning. A related and equally striking finding is that the voices often refer to the problem that troubles the child, but in an elliptical manner. To take just one example from the children studied by Sandra Escher:

The voices told an 8-year-old boy to blind himself. This frightened his mother. But when we discussed whether there was something in the life of the boy he could not face, she understood the voices’ message. The boy could not cope with his parents’ problematic marriage. He did not want to see it.

We wonder whether anyone has attempted to establish why, in Jani’s case, the rat is called “Wednesday”, why the girl is called “24 Hours”, and why is the cat called “400″? What do these mean for her? Why does Jani want people to call her “Blue-Eyed Tree Frog” and “Jani Firefly”?

Good Outcomes Without Treatment

Recently, Sandra Escher conducted a three-year follow up study of eighty children who heard voices, aged between 8 and 19 [1]. Half received mental health care but the other half were not given any specialist care at all. The children were interviewed four times, at yearly intervals. By the end of the research period 60% of the children reported that their voices had disappeared. Very often, this was because the triggering problems were dealt with or because the child’s situation changed – for example, following a change of schools.

Helping Children Who Hear Voices: Advice to Parents

It is important to appreciate that the desire to make voices disappear, although usually the goal of the mental health care services, is not necessarily in the best interests of children. Some children do not want to lose their voices. If children can find within themselves the resources to cope with their voices, they can begin to lead happier and more balanced lives.

The most important element in this process is support from the family. Unfortunately, we have found that mental health services often fail to have a positive effect on children’s voices, because they foster fear rather than coping. However, we have found that referral to a psychotherapist who is prepared to discuss the meaning of voices is often helpful.

It is important that parents do not assume that hearing voices is a terrible disaster but instead regard it as a signal that something is troubling their child. If parents assume that voices are a symptom of an illness, and are afraid of them, the child will naturally pick up on this feeling. This can lead to a self-defeating cycle in which the child becomes fearful and obsessed by the voices.

We would like to offer this 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices:

1. Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.

2. Accept the reality of the voice experience for your child; ask about the voices, how long the child has been hearing them, who or what they are, whether they have names, what they say, etc.

3. Let your child know that many other children hear voices and that usually they go away after a while.

4. Even if the voices do not disappear your child may learn to live in harmony with them.

5. It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.

6. Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on fixing those problems. Think back to when the voices first started. What was happening to your child at the time? Was there anything unusual or stressful occurring?

7. If you think you need outside help, find a therapist who is prepared to accept your child’s experiences and work systematically with him or her to understand and cope better with the voices.

8. Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.

9. Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.

10. Most children who live well with their voices have supportive families who accept the experience as part of who their child is. You can do this too!

Conclusion

In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems. Indeed, the opposite is most probable: children treated in this way will simply become more powerless. Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the treatment Jani receives is the only method available. We fear that this may cause some children to be subjected to an unnecessary lifetime in psychiatric care. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology.

We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his experiences and to discuss with the child, parents and therapists how this was achieved? If there is any way we could help make this happen, please contact us.

We look forward to hearing from you on the issues raised in our letter.

Yours sincerely,

Paul Baker

INTERVOICE coordinator

(Letter re-edited with the kind assistance of Professor Richard Bentall)

For the Selected bibliography please see original piece at Mad In America.  http://www.madinamerica.com/2013/01/the-hearing-voices-movement-in-response-to-a-father-my-daughter-the-schizophrenic/

Here are the first several comments that followed:

  1. Thanks for posting Jacqui.

    The Guardian article and story about the little girl pathologised by psychiatry and her father was harrowing to read and think about. I remember it being promoted before. Like a circus act in bygone days but more sinister and scary. Subjecting a child to these strong psychiatric drugs it’s a wonder she can function at all.

    It’s encouraging to hear of the Hearing Voices movement’s work, Chrys

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    • Thanks Chrys.

      This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.

      To counter-balance such a disturbing story I felt it was crucial to highlight the work of the Hearing Voices Movement which offers such a humane and hopeful approach and a viable alternative for Jani and other children like her, who are suffering because of scary voices and visions. There is always hope.

      Jacqui

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  2. While reading “Blue-Eyed Tree Frog”, thing in the left side of my head said “cognitive dissonance”.

    I’ve never heard of cognitive dissonance so I had to look it up to see if it exists. It does.

    I cannot claim “cognitive dissonance” as my own thought. It distinctly is NOT my own. How’s that for a real-time example of mental hearing?

    I don’t know if cognitive dissonance is “professionally” observed in Jani. I think it would benefit her greatly, and she would do remarkably well, to prescribe the treatment of: study linguistics. The greater her vocabulary becomes, the better she will be able to know and understand her own mind, and effectively communicate what she experiences to others.

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    • Interesting how those words came to you – from the collective unconscious perhaps?! – but I wonder who is actually suffering from cognitive dissonance. Is it 8 year old Jani who seems to be able to articulate and communicate about her frightening experiences so clearly, or is it the adults around her? How do they fail to see and hear the meaning in her experiences, rendering them a symptom of schizophrenia instead? I wonder if it is they who need study further…

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      • I love Jani. I’m fascinated by her. I wish I could meet her and talk with her.

        I believe in my heart that she really was born exactly as she is. I think her mind / psyche very much IS a real issue. I don’t know if I’d call her “schizophrenic” but I would call her Psychic (psychic, meaning – her psyche is distinct and remarkable and very active, obviously). Psyche is NOT a disease but that doesn’t mean it is always easy to live with. It can be outright brutal and even Hellish (such is life). There are various states of Psyche. An active one is *psychic*. It shouldn’t be so complicated.

        If she is renaming herself, it seems that “cognitive dissonance” could be an accurate description of what she’s doing. I read that she HATES her name “January” – which I think is really significant and needs to be understood. SOMETHING is motivating her to find a new name for herself. That’s a big deal.

        I don’t blame her family (or the rest of the world) for calling her schizophrenic. As of right now, people don’t know any different. Who could honestly deny the fact that she IS how she is? I can’t.

        To be real honest, I resent the fact that people are trying to spin the “abuse” angle, suggesting that abuse or neglect is what is causing her condition. That is BS. There very well may be some of those issues, but the girl IS born as she is. I think she DOES have something “genetic”. I think she IS a genuine psyche-active person. I don’t see her as “sick” but I do see her as somebody who needs a LOT of support to know and understand what she “has” and how and why she has it. I see her as 100% GENUINE: whatever it may be, she’s BORN that way.

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        • I am not sure that people are trying to ‘spin’ anything, just reflecting on what comes up for them when reading and hearing about Jani and her treatment and providing factual information that has previously been in the public domain.

          I appreciate your wish to not blame but seek to try and understand. However I don’t believe in schizophrenia. I think it is a damaging concept and that so called symptoms are reactions, often to traumatic or overwhelming experiences. I also feel deeply troubled by what is really going on here although ultimately, all we can all do, is speculate, muse, discuss…

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          • Let’s take a closer look:

            http://www.thefreedictionary.com/schizophrenia

            Do you see where it says

            “2. behaviour that appears to be motivated by contradictory or conflicting principles”

            ?

            Now let’s take that and pair it up with “cognitive dissonance”

            http://www.thefreedictionary.com/cognitive+dissonance

            A condition of conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions

            It seems to me (with my very basic, uneducated intelligence) that “behaviour that appears to be motivated by contradictory or conflicting principles” and “conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions” are PRACTICALLY THE SAME THING.

            For the record, I state and declare that I DID hear “cognitive dissonance” inside of my mind and did NOT previously know that term in ANY way, not even “unconsciously” or “subconsciously”. I simply have NEVER heard of “cognitive dissonance” ever before except FROM RIGHT INSIDE OF MY OWN HEAD, LIVE, AS I WAS READING. I was “brave” and “courageous” enough to actually type (publicly) exactly what I experienced (heard) inside of my “psycho”, “schizo” head.

            Hallucinations CAN’T BE CORRECT. About anything. And if they are, it isn’t a hallucination.

            Let the professionals look for “cognitive dissonance” in Jani. If they can confirm that, to support their schizophrenia diagnosis … hold on.

            Is anyone truly interested in actually helping the child? Is anyone truly interested in UNDERSTANDING HER?

            Let’s take it a step further:

            What is her INNER CONFLICT? Here’s a clue: she HATES her name. She is RENAMING herself.

            Why?.

            The inner-world is a REAL place. Lots and lots of activity (on the inside). One more time: psyche is NOT a disease.

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          • In reply to mjk: “2. behaviour that appears to be motivated by contradictory or conflicting principles”. It “appears”. To any unengaged observer, like an mh professional for instance. It may also “appear” so to a parent whose need to himself appear as the perfect parent isn’t met by a child who reacts to the parent reflecting the parent’s imperfection. A psychiatric “symptom” is a reaction to life that is taken out of its context with life. Thus the cognitive dissonance doesn’t happen in the person who’s labeled with “mental illness” on the grounds of psychiatric “symptoms”, but in those who label.

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  3. This story is all over You-Tube, too and it made me so sad I couldn’t watch the whole thing. I remember seeing this letter to Oprah a few years ago and thinking that this list of suggestions was great. So glad to see it re-posted here.

    It’s sad to think how many creatives, spiritualists, or entrepreneurs in our society are being snuffed out by this stuff. I’ve had to do some grief work around this off and on. What’s helped lately is a Bible verse from Jeremiah about “He will restore what the locusts have eaten.” [No offense meant to Non-christians] Much of what I’ve lost to psychiatry has now been restored in my life. Hopefully we can build a way to do this more often for our brothers and sisters and step-children like this in bondage.

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  4. I’ve been following Jani’s case for a while and think her treatment with a mega drug cocktail and her exploitation by the media and her parents is unconscionable. The work with children who hear voices, on the other hand, is inspiring.

    Jacqui, Did they ever receive a response from Oprah? And have you considered sending this letter to the author of the book (Jani’s dad) via his publisher? I do believe he wants to help his child — who I see as creative and gifted as well as disturbed — perhaps, perhaps he would listen.

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    • I agree that the exploitation of Jani is unconscionable. It is also heartbreaking that her creative attempts to survive, i.e. the voices and visions that she experiences, have been so comprehensively misunderstood.

      Fortunately, healing alternatives do exist and the fantastic work of the Voice Collective project in London is a brilliant example of this, an approach that I sincerely hope will become more widely available to children like Jani and their families.

      We never received a response from Oprah but as you suggest, it might be worth trying to send this letter directly to Jani’s father. Perhaps he would listen…

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  5. Here is the family’s Facebook page: https://www.facebook.com/janifoundation?ref=ts&fref=ts

    I resisted medicating my son for three years. Along with the voices, he had painful tactile hallucinations and frightening visual hallucinations. An array of therapists did not help. He is on meds now, which makes me very sad. However, he is no longer tormented by seeing demons cutting off people’s heads, for example. I’m hoping that the new therapist will be able to help him resolve this stuff. My guess is that Jani’s family is simply beside themselves, as am I. My heart goes out to them.

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    • I am sorry to hear about the awful time you and your son have been having. I have met and worked with many families who have been beside themselves with worry about their kids. As a parent I can entirely empathise. That is why I posted the 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices: from our experiences, the less alarmed parents feel, the better the outcomes for their children.

      I hope that your son is able to get the support from his therapist to make sense of the tormenting experiences that he was having. Wishing you both all the best.

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  6. Prior to her being subjected to the abuse of coercive-medical psychiatry, Jani was severely abused in her home.

    A few years back, Jani’s father was surprisingly forthright, in writing about this, online; yet, some time ago, he began scrubbing his tracks.

    For example, he removed the following two paragraphs from his own blog,http://www.januaryfirst.org (and then took that blog offline):

    “We tried everything. Positive reinforcement. Negative reinforcement. Hitting her back (I won’t tell you how many people told us that all she needed was a good beating). We took all her toys away. We gave her toys away. We tried starving her. We did EVERYTHING we could to try and break her. Nothing worked.

    “The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage.
    We got a referral to a psychiatrist. Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times. Today, Jani is no longer a brat. Today, Jani is schizophrenic.”

    Source:

    http://bipolar-stanscroniclesandnarritive.blogspot.com/2009/07/los-angeles-times-reporter-defends.html?showComment=1314932254631

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      • Jacqui,

        If the exact nature of Jani’s current ‘treatment’ can’t be discovered by reading her father’s new book (which I have never read, but which I know is now being featured in the Guardian), I believe we can, nonetheless, reasonably surmise, that Jani is a young person whose parents are – with the help of psychiatrists – drugging her behaviors continually; for, in the course of their seeking help for her, years ago, Jani’s parents came to developing a ‘mental health’ lobbying platform, vis–à–vis Jani’s mom (Susan) hosting her own weekly radio show called, “Bipolar Nation,” and by way of Jani’s dad (Michael) often co-hosting…

        Both parents are outspoken, in their opinions, on that show (as, of course, most radio show hosts will be); sadly (for their kids), not infrequently, they are inclined to broadcast their children’s ‘mental health’ issues on that show. (That said, now, hesitantly, I mention the link to their free podcasts):

        http://www.latalkradio.com/Bipolar.php

        In your comment, above, at January 22, 2013 at 7:50 am, to Chrys, you say:

        “This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.”

        I share your sense of horror. (Indeed, *never* do I cease to be troubled, by the latest example of parents publicizing their kids’ ‘mental health’ issues; personally, I struggle, wondering: is it OK even to discuss the most trivial matters pertaining to my child’s life, online? Hypothetically speaking: can I even mention what I may consider a disappointing report card, in good conscience? I think not. (But, of course, mentioning ones child’s doings, from a position of relative anonymity, might not be so bad. I’m uncomfortable with it, when people do it; but, the anonymous approach may be somewhat more acceptable.) Certainly, I’d not want to be one to attach *any* kid’… read more

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  7. First of all, sorry I did not know about the possiblity to sign the paper. In my daily work I meet far too often children and young people coming to our place with psychiatric diagnosis and prescriptions of drugs. Fortunately I am often part of a change, I have the joy to work with people who believe in other things, people who believe in the importance of being present and participating in a relationship to try to find out how come it is like this. And there are answers, always! Not necessarily easily found, not necessarily comfortable, sometimes very painful issues to discover, sometimes with a lot of guilt and sleepless nights. So it is important to be there together with the child and his / her family (if possible). There are no other way. It can never ever be acceptable to define a child or a young person having a psychaitric illness without taking into account the context, life conditions, family, society, etc… And sad to say, but have also very many times met children and young people getting worse in a “professional” context with its manuals, methods, and different criterias. I have a dream about a different approach, about a knowledge which include many people, also the professional “helper”, a knowledge which has to do with trust, hope, taking a responsibilty and to find ways to collaborate.

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    • I agree Carina that there are ALWAYS answers, even if they lead to some very painful, uncomfortable issues. No experience, nor person is utterly incomprehesible, if we are simply willing to be with people, relate to them and really hear what they have to say. Sadly many ‘treatments’ actually make matters so much worse which is a travesty. Fortunately, there are a growing number of us who are expressing our outrage at such misguided attempts to help and who also have the knowledge and experience to advocate ways of working collaboratively that really do help.

      Looking forward to collaborating with you and others in Sweden in April, to help spread the word about what works!

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      • Yes it will be great to see you, and to listen to you of course!
        This morning on my way to work I met a mother and her four years old daughter on their way to day care (or how to call it in English). In the beginning of last autumn a colleauge Hanna and I met the girl and her parents who at that time were in a chock since a psychologist after meeting the girl ONE time had told them that the girl has a very severe autism and has to start medicating and go through psychological tests. They were also told that the girl will never be able to live “a normal” life. Well, to make a long story very short, we have seen the parents during some months and listened to their story over the last ten years and how different things have happenened in their life, and not to say that everything is totally ok by now, but they again trust their own feelings and experiences towards the daughter and have decide not to go back to child psychiatry. Welcome to Gothenburg!!!

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        • This is an all too common experience, in many parts of the world it seems Carina. It just makes me more determined to continue to raise awareness of the harm caused by those who are supposed to help, and of the many excellent alternatives that are developing across the world. This web site is a fantastic way of spreading awareness of both of these crucial issues. Pleased to ‘meet’ you here – very much look forward to meeting you in Gothenburg in the Spring!

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  8. Jacqui,

    This family has received a great deal of publicity in recent years, and it is difficult to avoid the conclusion that the parents have encouraged the child’s dysfunctionality for their own gain. As long as all the criteria for these so-called illnesses are behavioral, this kind of thing is almost inevitable. Most commonly, this takes the form of parents coaching the child with a view to obtaining disability income. But more exotic versions can and do occur.

    Philip Hickey, PhD
    http://behaviorismandmentalhealth.com/

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    • Parents coaching children in order to obtain disability income isn’t something I know much about but I can imagine it happens. As to whether so-called illnesses arebehavioral is open to debate. It seems to me that troubling behaviours are the manifestation and consequence of overwhelming emotions, reactions to the environment, impact of significant relationships etc. Simply switching the frame from illness to behaviour isn’t the answer for me. A focus on it may be part of what helps makes sense of the whole person and their experience…

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  9. I so appreciate this, Jacqui.

    I have been suicidally depressed many times, but I have never heard voices. I have talked with voice-hearers in the hospital very matter-of-factly, but I never thought about this approach until I heard of HVN, just a few weeks ago.

    Your post is enlightening. I am a peer specialist, and I am so grateful for the information I get at MIA. I am in your debt.

    Pam

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  10. I wrote about Jani as an exams project and did a lot of research as her father has used her to promote his blog and later the book based on his blog – and to beg for money. It is one of the most tragic public exploitations of a child I have ever been a witness to. He has been investigated for sexual abuse of jani but never convicted. He has himself written about the violence he and Janis’s mother exposed Jani to before he found out that that was not a smart thing to do on the net. He becomes infuriated if he is criticized on his blog and no form of critique is tolerated so no dialog is ever entered into unless it is basically praising especially him. There are clips when Jani is just weeks old and he is talking about her hallucinating! I concluded after reading, watching video clips and listening to their radio program that we have here a case of what could go under the heading of Munchausen by proxy syndrome. The interview with Oprah btw shows clearly (my opinion) that Oprah is out of her depth and that she believes Jani is ill and addresses her as such.

    However what is also dreadful is we have a psychiatric system prepared to drug Jani to the gills and ignore the family life which in Jani’s case is plastered all over the internet, though now-a-days it is carefully planned and orchestrated. There are clips where it is so obvious Jani is trying to please mom and dad (and the camera) by waving a plastic knife around so that the staff can say she needs to be admitted as violent(!)

    Thanks Jacqui for bringing the plight of this poor child to our attention again, and who knows maybe one day she will read and hear that another truth also exists…

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Health, Medication

THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work…

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FOur Different Atypical Antipsychotic drugs
 FOur Different Atypical Antipsychotic drugs
and they really work for you, then don’t listen to me, keep taking them and the more power to you.

Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the “anti-psychotic” pills you take (or I’ll add in for good measure, god help us all, the “anti-depressant” pills) are doing what we were always told they were supposed to do. Or if you don’t work or care for a family, if not, do you at least live a fulfilling single’s life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who’s to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if  research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen…most of them not drug related at all. One simply cannot worry about a “what if” future, when the present is so bright.

So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don’t need me, and you won’t want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.

But this is a SHOUT OUT to you, there, who don’t like your drugs and don’t want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do,  forewarned is forearmed…This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told.  (I likely won’t have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants…You could turn to MAD IN AMERICA by Robert Whitaker for a take on those — just check out his chapter on Prozac for a taste…) It isn’t that AP drugs do nothing at all. They do attack the brain’s neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven’t even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.

Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that’s because it is as old as the hills and as tiring. You don’t have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.

Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would “work” against schizophrenia. Because the theory was, both in ECT and insulin coma,  as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them “better” and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving…at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!

Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic (“brain seizing”) drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..

But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. “Schizophrenia is an illness just like diabetes.” That was the canard I was told in 1980 — we are still being handed the same disgusting lie! — when I was first officially diagnosed with the condition, or told the name to my face at any rate. “You’ll never recover, and you will likely have relapses, but you won’t be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn’t a death sentence these days but it IS a life sentence…” So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn’t know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn’t read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist…which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart…You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for “schizophrenics.” It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning’s dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.

Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses…until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.

MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn’t. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system’s poverty and being sick. And once in a while that person’s husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn’t fall into the trap of SSDI  after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again…

But alas, that didn’t happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two…

But I digress, I digress, so let me tell me my own story, if I have the time and energy.

I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren’t mind, my sister has control of them! And I can’t sleep, I can’t sleep!

Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I “needed” in the throes of my illness?

I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia…The rest, well, if it isn’t everyone’s history, it is a version of it. And  it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good…I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them…

So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough,  you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don’t respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation…So they did that, and they kept me in seclusion for weeks at a time…until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there….I had a life, yes, but it wasn’t much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn’t know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn’t even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.

It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis… I don’t have a bed, only a recliner I should not sleep in…I am a mess, and  I am also NOT going to continue to take my Abilify and Geodon much longer…I cannot. I cannot. I do not know what will  happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.

More later, or on another day. Sorry this was so impassioned.

Art, Health

Why I am Opposed to Involuntary Outpatient Commitment or IOC

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Takedown on N-7

 

I have been diagnosed with schizophrenia for nearly forty years and was forcibly medicated and involuntarily hospitalized many times over those decades. Ordering me to take an “anti-psychotic” medication and then physically compelling me to submit to IM injections never got me to a point where I saw the “error of my ways” much less helped me to recover. How can that be? Take my 3-week stay at Yale New Haven Psychiatric Hospital in the summer of 2013. Because I refused the prescribed Zyprexa, I was repeatedly held down and forcibly injected with IM Haldol, a so-called first-generation “anti-psychotic.” Call Haldol an antipsychotic if you will or be honest and  just call it a behavioral management drug, it subdued me, yes, it did indeed. It stupefied me. And in the end I cried “Uncle.” But before I surrendered and submitted to their demands, I only got worse, regressing to a degree so pathetic I find it hard to believe it now. But that this happened was a connection the doctors and staff never made,, not even when after I was forcibly injected, I would strip, defecate and write on the wall with my feces.

 

It seems obvious, at least from my experiences, long and manifold, that involuntary treatment does not work, at least not the way people think it will or should. Over the short run, you can indeed make a person take medication (which is what this is all about in the end, drugs, not something like psychotherapy being forced on anyone…). You can threaten a person with hospitalization “or else,” and frighten her into swallowing pills. And if she does refuse, you can hospitalize someone for refusing and medicate her against will just as you do now to certain in-patients.

 

You can, if coercion is your game, put certain involuntary in-patients into 4-point restraints, pretending that her very resistance makes her a danger to others, punishing her for fighting the team that holds her down. You can even inject her with so-called “depot” drugs that once in the system continue to work for as long as a month.

 

Clearly, people break, faced with threats and coercion and many eventually come to accept treatment “voluntarily,” at least for a time. They may even appear to “get better”. Nevertheless this sort of improvement is often shaky at best.

 

Involuntary — forced — treatment is the worst possible thing you can do to a person with a serious psychiatric condition, especially schizophrenia. Symptom improvement will likely be temporary, even with medication “on board.” I have yet to meet anyone who actually gained that magical “insight” via coerced medication… And given the side effects of all the known drugs, very few people who are not voluntarily in the system consent to take them for long — for good reason.

 

Moreover, as recent research has shown, there is every reason to suspect that psychoactive drugs, especially the so-called antipsychotic drugs, are far less efficacious in promoting real and permanent recovery than we have been told. However, the effects of trauma and the aftermath of involuntary treatment can be disabling, even permanent. I know; I have been there. As a result of my experiences with forced treatment I now suffer from PTSD in addition to the diagnosis of schizophrenia.

 

Although at present I choose to attend outpatient treatment, I do not always comply with taking medication, especially when it make me feel bad. I won’t even take meds that others claim alleviate my symptoms. If a drug makes me feel horrible inside, I assert the right to refuse it.  Sometimes treatment can be worse than the disease. Alas, because of this, I have, while in-patient, all too frequently been subjected to forced medication hearings, hearings which I believe I was pre-determined to lose, the deck being stacked against me.

 

At the former Hospital of St Raphael’s in New Haven in 2004, I was not only forced to take the atypical antipsychotic drug Zyprexa, despite the fact that the medication had caused me to gain 60 pounds, elevated my cholesterol and triglycerides sky-high, and made me pre-diabetic. The probate judge, on the instigation of my in-patient psychiatrist, also ordered that I undergo involuntary ECT otherwise known as electro-shock treatments. I was so terrified of the side effects and the real brain damage ECT was inflicting on me, that I literally awoke,mornings, with excrement in my underwear.

 

In the more recent past, my experience at Manchester Memorial Hospital ECHN in Manchester, CT was just as horrendous. This, along with an equally brutal experience, at Middlesex Hospital in Middletown, Connecticut 6 months later combined to such trauma that I was diagnosed with the additional problem of PTSD. As recently as the winter of 2013, at Hartford Hospital’s Institute of Living, I was threatened with forced ECT, kept in seclusion for three weeks and restrained for nearly twenty hours multiple times. Why? Because as the record states, I was unpredictable and “did not follow directions.”

 

I would like to tell you about the Manchester Hospital experience in a little detail, as I believe it will give you a “taste” of where IOC, when taken to its logical conclusion, can and  will lead.

 

I was admitted there on a 15-day physician’s emergency certificate (PEC), and the attending,  a certain Dr Benjamin Zigun,  summarily took me off the two-antipsychotic drug combination, plus an anti-seizure medication and the anti-depressant I had come in on. This drug  “cocktail” had worked for me since 2007 without  distressing side effects. I was not only willing to take it but I felt it helped me function better than I had in years. But the psychiatrist at Manchester Hospital decided, and I quote, “since you are here, by definition your current meds aren’t working. I will put you on something else.” Did it matter to him that I had already been tried on nearly every other drug on the market, old and new, and none worked as well and with as few side effects as the Abilify/Geodon combination I was then taking? No, he was the doctor and the doctor’s decree was law.

 

As a result of his ministrations, the “offending meds” were removed  and I was again  ordered to take Zyprexa, despite its known and severe side effects. Over the next few days, I continued to refuse it. Naturally, having been abruptly withdrawn from all my usual medications, I began to decompensate further, having nothing in my system.  A forced medication hearing was held. For some reason, Dr Zigun decided I would not be given Zyprexa after all, but one of the oldest neuroleptics in the PDR, Trilafon. When I objected, he said only that if I refused even a single dose, I would be injected in the buttocks with 5mg Haldol.

 

All too familiar with Trilafon’s side effects — from akathisia’s maddening restlessness to a constant fine tremor in my fingers, I refused to swallow the pills. But neither would I willingly lie down to take a needle full of “vitamin H,” Haldol being a drug just as awful as Trilafon if not worse. So I resisted, physically, when it came to the nursing staff grabbing me and pinning me to the floor. I fought them when they so much as approached me with the punishment hypodermic.

 

At first, they just overpowered me, injected me and walked away. But after a few such tussles they started calling “a code” to bring in the goon squad.  I do not know how many times this happened but the goon squad consisted of several people including uniformed security guards . Without a pause, they would barge into the room, assault, restrain and inject me, despite my terrified screams.

 

This sort of violent encounter happened so many times, along with predictable and regular use of 4-point restraints and/or solitary confinement, where I would be locked in their dark, cold seclusion room, that I literally lost track of time. Indeed, but for whatever I managed to record in my journal after each episode, and from their single-viewpoint one-sided hospital chart, I would have no idea what happened during most of that entire three week period at Manchester Hospital, though from my bodily reaction when thinking about it, I know something very bad happened.

 

Why do I tell you this? Because this sort of aggression, even torture is what forced medication and involuntary treatment lead to much more often than you may want to believe.

 

If H.R. 4302 passes in the Senate and expanded IOC is instituted in the states where it is now allowed, how precisely do people intend to treat a person with a “mental illness” who does not to want treatment? If a person refuses to leave her apartment to be hospitalized, and is able bodied and physically strong, do they propose to assault, even Taser her, though innocent of a crime? Once she is unconscious and no longer able to resist, do they then intend to hospitalize her against her will so that she can be forcibly medicated, with the threat of  4-point restraints as a back-up if she continues to resist. Or perhaps they expect that trauma itself to scare any individual into compliance?

 

I am not against all psychiatric treatment. I am definitely not against all psychiatric residential treatment facilities ( including hospital psych units…) But we have curtailed the availability of in-patient beds at present to our detriment, even as we have allowed drug company research scientists and providers to focus almost to the point of tunnel vision on the medical model. This has brought us right to this notion that if we institute IOC, and can force a given individual to take medication, we will be working on a problem that has a real and objectively verified solution. In point of fact, however, there is absolutely no proof that antipsychotic drugs lower violence on the streets or have any effect at all on the incidence of violent crime.  That said, if a national IOC law mandated forced treatment, and hospitalization, where are the psychiatric beds to follow through on that mandate? Downsized, in most states to ghosts of their former abundance.

 

If this is what supporters of H.R, 4302 anticipate and believe in: IM injections, four-point restraints and all, then  I must ask: When will you learn that you cannot treat anyone with violence and expect the outcome to be a desirable one?  What you propose to do is to subject persons with psychiatric disorders to more trauma and violence than ever. You want to expose them to a“treatment” that is just euphemism for brutality.

 

I fought back, tooth and nail, biting and clawing the goon squads that descended upon me and attacked me, intending to shackle me by the wrists and ankles to a bed, because as they told me, “ I didn’t follow directions.  Yes, I resisted. Who would not have? I was terrified. What did they expect me to do, politely thank them?

 

This sort of coercion and cruelty masquerading as care doesn’t help anyone get better, it only chases them the heck out of Dodge and as far away from “treatment” as they can get. Oddly enough, little do “Escapees” from treatment such as these know that they might be the lucky ones. As longitudinal studies of treated and untreated individuals with schizophrenia are coming to light, it has become apparent –even Thomas Insel, head of the NIMH admitted this on his blog — that treating – medicating — schizophrenia long-term has had unintended consequences, one of which has been to inhibit complete recovery. By contrast, those persons who walked out or were forced out of treatment, “back wards patients,” seemingly hopeless — it turns out that these people to a much greater degree than those who stayed in the system, recovered on their own, without help, largely by stopping their medications.

A majority of these “lost souls” found themselves only after they ceased taking medication and ceased consuming mental health services. Because they became wage-earning, productive citizens and not mental health service users, many are now “lost” to the mental health system. To experience so few symptoms as to be unknown the to  provider community despite past illness, surely this must be accounted the best of all possible outcomes.

 

IOC works — or doesn’t work — according to a medical model that imposes medication on the unwilling, with no end point, insisting that mental illness is no different from diabetes. But as Dr Insel has admitted, this is not true and apparently never was. New models are needed. Violence is no solution, nor does it cure anyone to impose treatments of dubious value and great harm on those who are different from some mythical “norm. ”

 

 

(I sent a version of this to Connecticut’s Senator Blumenthal and several other people, including the New York Times, without response, so I am posting it here for public consumption and comment.)