The Eye Watches, But Let's Not Say Anything...Shhhh!

Artist Trading Cards and New Picture

Recent art work. all are ATC (Artist trading cards 2.5 by 3.5 inches) except the last.

Love lorn White Donkey pines for the black male, but he only ignores her!
Lovelorn White Donkey on Vermont farm pines for the black male, but he only ignores her!
Birth of Wisdom (Or the Eye is watching you...)
Birth of Wisdom (Or the Eye is watching you…)
Water over the Bridge (a play on the notion that the past should be "water under the bridge.")
Water over the Bridge (a play on the notion that the past should be “water under the bridge.”)
Farmhouse,  where the owners lived, across from where I stayed this summer in Vermont
Farmhouse, where the owners lived, across from where I stayed this summer in Vermont
This is where I stayed last summer, and where I am returning. For a month or two...at least.
This is where I stayed last summer, and where I am returning. For a month or two…at least.
Tidal Wave ATC (Artist Trading Card)
Tidal Wave ATC (Artist Trading Card)
Ghostly Face Trading Card
Ghostly Face Trading Card
The Eye Watches, But Let's Not Say Anything...Shhhh!
The Eye Watches, But Let’s Not Say Anything…Shhhh!

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

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 andernYou 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.)

 

 

“Protection and Advocacy” Agency in Connecticut is a Crock of Shit…

CT PAIMI What a Crock of Shit
CT PAIMI What a Crock of Shit

 

Dear Attorney General George Jepson and DMHAS Commissioner Patricia Rehmer,

I was a client of Mr Wiley Rutledge at the Connecticut Office of Protection and Advocacy, PAIMI, (Protection and Advocacy for Individuals with Mental Illness) for several years, ever since I was held in seclusion and put into four-point restraints as disciplinary measures at the Behavioral Health Unit at Middlesex Hospital in 2010. In July 2014, while he was attempting to get my complete medical records, unsuccessfully despite many attempts, from the Institute of Living at Hartford Hospital for my January-February 2013 stay, as well as records from my Yale New Haven Hospital 1971 stay, which he claimed to have obtained, he dropped out of the picture altogether. I emailed him and called but got no response. Finally I called the P&A office and was told he was “on leave.”
 I was given no explanation, told nothing. Instead, Mr Bruce Garrison, his supervisor, simply sent me all the files that he found in Mr Rutledge’s office, then he summarily dumped me. He has offered no substitute or anyone else to take up my case at CT PAIMI despite all these unresolved issues that are still pending. I wrote him that Mr Rutledge and I had been filing a case in Superior Court against Hospital of Central Connecticut  in New Britain for dragging me into a horrific seclusion cell numerous times when I was never violent or dangerous to self or others, in other words, as retribution and punishment. Also, the male guards forcibly stripped me naked while putting me in seclusion then placed me naked in four-point restraints.
All that said, Mr Garrison, had no response but to drop me from the caseload. Then in addition to the scant files that he sent, without the information from either Yale or the IOL that he promised, he sent me the case files of someone else. I now have the most private information on a certain A— H—- who was psychiatrically evaluated by Centegra on 12/17/02. How this could have happened I do not know but it should not have and I believe that action needs to be taken to see that it never happens again.
I want to know who will be working with me from now on at PAIMI because I cannot afford a lawyer (never did have any legal representation even from CT PAIMI) and why I have been summarily dropped from PAIMI case loads, after working with them so patiently for so many years.
Thank you for your urgent assistance in this matter.
Pamela Spiro Wagner

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

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!)…

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

    Report comment

      • 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

  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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A Poem for My Aging Mother

My poor mother is suffering from dementia at 87 and it is very sad and difficult to watch her decline. I will write more if I can at some later time about it but for now I want just to post a poem I wrote for her years ago and then rewrote completely recently.

 

Over the years we have had some troubled times. Because my father disowned me for some thirty-five years, she had to make a choice between him and me, essentially, and the one she made was obvious. I was out of the house by then and I am not sure it ever really occurred to her to make any other choice, but who knows? I do not. In any event, I bear her no bad feelings for this, I do not think. Though had I been “her son” with schizophrenia i believe the outcome and her choices might well have been very different, as they always were when it came to my brother.

 

But that is water under the bridge. The choice was made and I was sacrificed. That said, perhaps it is a good thing, I dunno. If she had given up her life for me,  I might never have developed any independence at all, or written the poems and books I have.  I might never have discovered my art abilities. Who knows? No one knows, of course, what their “alternate futures” might have  held. We can only work with what we have and the cards we are dealt. We can’t make others choose on our behalf. Much as we might wish them to.

 

I never wanted my mother to give up her life for me. I felt guilty enough, just for being the way I was. The worst thing in the world would have been for her to make any sacrifice for me at all. For anyone to have done so would have been damaging to me. So I am glad that everyone went on their way, because otherwise I would have had to kill myself in apology.

 

I could say much more but I am sleepy so without further fanfare, the poem:

 

PHONE CALL TO MY MOTHER AT SIXTY

 

I have not thought of you all day.

A March wind rattles the wires,

wishing you a belated happy birthday.

You are sixty, my grandfather ninety,

my younger sister thirty,

but if there is significance in that,

a syzygy, some conjunction in the heavens

I have yet to figure it out.

Your husband answers, my father,

aligned against me north-north,

between us implacable silence.

So we sidestep confidences,

suspecting he is listening in

until in the distance the line clicks

like a playing card in the spokes.

But even so, how carefully we speak,

expelling words of fragile allegiance

each of us pretending not to know

what the other is thinking.

 

Suddenly you confide, you feel old:

the baby is thirty, you don’t like

your new job, you miss teaching,

the exuberant children, their bright

and lazy charm. There is so much to do,

so little time. Before it is too late

 

you want to captain a boat to the Azores,

learn cabinet-making — you have the tools,

a lathe, a power saw, inherited from your deaf father

who never heard you speak

but built you a fabulous dollhouse

and taught you, at ten, to sink the eight ball.

 

Could I ever confide that I, too, feel old? At thirty-five

you had a husband, four children,

a career in the wings. Older by a decade, I rent

a single room and have no prospects

beyond the next day’s waking.

Instead I carefully quote Joseph Campbell’s

advice: follow your bliss.

And I remind you Aquarians always step

to a different drum’s thunder.

You like these clichés,

and laugh, repeating them, then you say

with a sudden spontaneous sincerity

that moves me how good it is to talk with me.

I think of all the times we have not spoken,

how at sixty it would be nice

to have a daughter to talk with

instead of friends wakened in the night,

reaching over husbands or wives,

to answer the phone, “Hello? Hello?”

their wary voices expecting

death or disaster.

 

You are tired, you say now,

you have an early appointment.

We promise each other a date for lunch.

But I will not call for a long time.

Or perhaps I will call the next day.

Before you hang up, you let slip

it’s your wedding anniversary, one

marked by some mundane substance –

stone, carbon, foil, rope.

Should I congratulate you, I wonder,

or console you? Finally, we say good-bye.

Across the wires I think I hear

your voice crack, but it could be the wind

or a bad connection.

#TBT: What is Trauma?

Pamela Spiro Wagner:

These are important points about trauma to remember: how it is experienced by the individual matters more than the nature of the event. I would also like to point out to those who think that doctors and nurses cannot cause PTSD, trauma inflicted by caregivers, as seen above, tends to be the most severe, esp when repeated. So when psychiatric caregivers repeatedly seclude and restrain patients in abusive and brutal fashion, as they do and did me, trauma results inevitably in those who are prone to it…

I had a long talk with my psychiatrist yesterday about my ongoing anger on this issue,and i said to her that it was easier for a Mengele twin to forgive the Nazis than for me to forgive Michael Balkunas, MD because the whole world acknowledged (or most of it) the heinous deeds of Hitler and Mengele, and grieved for the slaughtered millions in WWII…they acknowledge that terrible wrongs were done. But who ever acknowledges that wrongs were done to me, or to other mental patients? NO ONE! Entire nations apologize to the Jews and even the violated catholic children get an apology from Pope Francis but american mental patients just get more forced Haldol shots and silencing! Am I angry, yes! And hurt and my heart races and i get tearful every time i even go to that place where i tHink about Manchester or Middlesex or Hallbrook, or st raphaels or Yale or new Britain General or so many other bad bad places i have been…but i am leaving Connecticut. I have to. i will be moving to Vermont on November first, whether they really want me, destitute or not, because i believe they have a kinder system towards both the people and the environment up there. And finally, as Rainer Maria Rilke’s wonderful poem “The Archaic torso of Apollo” ends, “Du must dein leben andern…” Or you must change your life….and that is what i am doing, in huge style. Changing everything. Ending one life and starting a brand new one in another place i have only once spent 6 weeks…i know no one there except two people i met there this summer. But i can do it. I survived rape and poverty and near murder. I can survive anything.

Originally posted on Dr. Kathleen Young: Treating Trauma in Tucson:

Happy Thursday! Today I want to revisit a foundational post and a good starting place for further exploration of Treating Trauma.

What is Trauma?

What do  therapists mean when we talk about trauma?

One definition I like states that “psychological trauma is the unique individual experience of an event or enduring conditions in which: “The individual’s ability to integrate his/her emotional experience is overwhelmed or the individual experiences (subjectively) a threat to life, bodily integrity, or sanity.” (Pearlman & Saakvitne, 1995, p. 60)

The important part of this definition in my practice is the emphasis on “unique individual experience”.  You get to define which experiences are traumatic for you, whether or not it would impact others in the same manner.  It’s not the objective facts that determine whether an event is traumatic,  but your own emotional experience of the event.

Put more…

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Lost and Never Found: An Alcoholic’s Unknown Story

Pamela Spiro Wagner:

Here is what I wrote in response to this amazing post on Taking the Mask Off. A difficult post to read but so very worthwhile: Dear CP,

I am crying as I write this, and trying not to wipe away my tears, because other people always hand me kleenex saying, “Don’t cry, don’t cry!” when sometimes the world has sad stories to tell and crying is a good good good way to deal with this and their kleenex is just a way of telling me of THEIR discomfort with my feelings.

But I cry not only out of sadness but because you understood that 12 year old daughter’s undying loyalty and her love for her mother, and you also “got” her drunken abused mother so incredibly well. This has made you, Cortland, such an incredibly empathetic person, I feel honored and a bit safer in the world just knowing you are here in it with me.

Thank you for feeling safe enough to share this story with us. You amaze me, constantly. I was unable to read this for the longest time, as it brought up difficult feelings but I am so very glad I did…It is an astonishing and uplifting story fundamentally, largely because of your attitude and what you learned from it all. AND because of what you insist on teaching us from it.

Right on! and WRITE on, and fight the good fight because that is all any of us can do. And thank you Cortland, for being you. You give me hope beyond hope that there is good in the world.

Love,

Pamela Spiro Wagner

Originally posted on takingthemaskoff:

image

“Did you hear about the rose that grew from a crack in the concrete? Proving nature’s laws wrong, it learned to walk without having feet. Funny, it seems to by keeping it’s dreams; it learned to breathe fresh air. Long live the rose that grew from concrete when no one else even cared. You see you wouldn’t ask why the rose that grew from the concrete had damaged petals. On the contrary, we would all celebrate its tenacity. We would all love it’s will to reach the sun. Well, we are the rose – this is the concrete – and these are my damaged petals.”

 -Tupac Shakur 

 

 Here we are one day in a meeting talking about patients. What I hear is “she just pops them out and then we end up paying for them.” What they are referring to is this patients 7 children that she has. The staff are upset…

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Trauma and Its Sequelae: A Hospital Poem – edited and updated

TRAUMA AND ITS SEQUELAE…

 

Written months after my 4-week admission to the psychiatric unit, W-1, at New Britain General Hospital/ Hospital of Central Connecticut, in 2014 where I was “treated” and abused by Dr. Michael Balkunas, MD

 

Nine days after your worst hospital stay ever

you are still wearing the shades

that protect others from you

though no one else believes they are in danger

Those staff however wrote you up

as “assaultive” and dangerous to self

and others. But they didn’t mean it the way

you do now and their description of your

behavior was neither accurate nor truthful

Often they lied, as liars do,

just for the sake of convenience.

 

Now you are a week away from meeting new “cousins”

who await your vacation in northeastern Vermont,

a place magically named the Kingdom

and the recuperation your mind-body badly needs.

Still unable to let go, you perseverate over

the half-nelson grip of sadistic guards

bent on eliciting pain.

What happened to the nurses’

“healing touch,”

their concern for “the dignity, worth,

and uniqueness of every individual”,

or their “primary commitment

to the patient?”

 

When the guards forcibly stripped

then four-pointed you to an bare mattress

they were just replaying their favorite rape

yanking each limb wide

to expose, degrade, humiliate.

Never mind the nurses’ vow to protect

the vulnerable. The official hands-off policy

protected only their own asses.

 

So how do Truth and Forgiveness Programs proceed

when so many refuse to acknowledge wrong?

The hospital broke every humane rule;

they only stopped short of murder

because you submitted,

nick of time. Yet they had the last word:

stuffing your screams

when they muted the intercom

and slammed the door between you

and the mandatory one-to-one observer.

 

No one ever is there to bear witness, is there?

That point has always been the point,

from Daddy to doctors.

and all the hairdressers and nurses in between.

They’ve made a religion of secrecy

and no one wants to know

what they don’t want to know.

 

Call it “our family’s business,”

call it “a private cut and shampoo,”

or just call it, discreetly, “treatment”–

but they can always do what they want to, to you.                          .

When they break you, they declare

you’re just “one of the family,”

no different from anyone else,

now that they’ve finally fixed you for good.

Trio of Psychiatric Abuse Collages: encounter, restraint and seclusion

Encounter in Seclusion Room - collage of torn paper
Encounter in Seclusion Room – collage of torn paper
Hospital Seclusion Room
Hospital Seclusion Room

 

Nude Schizophrenic IN restraints While Bored nurse Looks On
Nude Schizophrenic IN restraints While Bored nurse Looks On

 

you get the idea….no violence, just a scornful set of nurses and aides and a security guard willing to do anything he was asked…and chaos broke loose with terrible consequences.

New Art: Moth Whimsy – Butterfly Wolf!

Moth Wing Picture -- Made from wings of moths found each morning in Vermont
Moth Wing Picture — Made from wings of moths found each morning in Vermont

 

Transformation into the Vermont Butterwolf!

Butterfly Wolf or BUTTERWOLF!
Butterfly Wolf or BUTTERWOLF! (I was just having a little fun, digitally with a program called art studio but I really did glue a lot of moth wings to a piece of mat board before I fooled with digital pen and paint.)

 

 

 

 

 

 

 

 

 

Ignorance: The Human Disease

Pamela Spiro Wagner:

Some amazing musings on Borderline Personality “disorder” by taking the mask off. Beautiful post. I will comment later.

Later: one comment i did want to make is this: so far as i know, and despite current claims, RW never claimed to suffer from anything other than depression and drug and alcohol addiction. He never to my knowledge claimed to be “bipolar.” Now, if one of his drugs of choice in self-medicating his depression was cocaine, and i am not saying i know this to be a fact, only supposition, then that RW may have been using also Alcohol to reduce the manic frenetic highs of cocaine, not that he naturally experienced highs and lows. 

But now certain website want to place Williams under their bipolar umbrella.

I frankly find it troubling this push to subsume everyone with depression under t he bipolar blanket.

If it produced fewer people suffering from longterm disability and mental illness as a result, then i would cheer it. But in point of fact, research has shown that even in strictly diagnosed Bipolar 1 in which mania, naturally has occurred, treatment with lithium has not in fact served people as well as they claim. In decades before lithium came on the market, before they claimed to be able to “treat” manic-deproession, sufferers largely were rarely seen in the large state hospitals and usually only on a temporary basis. They were not longterm or chronic patients. Usually they got better and if they occasionally suffered downs again, the manic episodes might never be seen again after the initial one. The point being that bipolar susceptibility was not the chronic and terribly disabling illness that it has suddenly become, and i blame the medications for that development. That and the huge expansion of the diagnosis into BipolarII so that everyone with depression, even bereavement, is now labelled bipolar with several devastating consequences.

 

one is that the person is told they have a chronic, severe incurable mental illness for which they must take meds the rest of their lives, which will end up being a vicious cycle. That mentality produces enormous disability, lifelong. Two is that it ruins lives that might have been productive had the verdict been less dire and the treatment less dire too. Instead of telling someone who is depressed that their occasionally periods of cheer or even anger are appropriate, doctors see them as symptoms of this new entity bipolar II and use new useless drugs on them, including antipsychotics, with terrible side effects and psychological effects that are even worse. I have literally never seen anyone once diagnosed with Bipolar II get better unless they rejected the dx entirely and left the labeling System altogether…how can anyone escape it otherwiThey want you to believe that your moods are an illnesss rather than a healthy way to fight back against depression, as if it is abnormal to feel anything other than sadness! It is, in a word Meshugas of the highest order.

Originally posted on takingthemaskoff:

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“The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift. We will not solve the problems of the world from the same level of thinking we were at when we created them.” -Albert Einstein

Robin Williams didn’t kill himself, stigma killed him. It kills many people like him everyday. Here is how:

STIGMA, that is the reason people do not ask for help. STIGMA is the reason people do not go to the doctor and say I’m depressed, or I’m an addict, or I do not feel things like anyone else. Who wants to say that I feel all these intense emotions? When you know what the result is going to be. What we will do is we will give you medication. We will tell you to change, to just feel…

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Solitary Confinement is Torture and You, Dr Michael Balkunas, Can Go Fork Yourself!

This is from the New York Times today:

To the Editor:

Re “When Cell Door Opens, Tough Tactics and Risk” (“Locked In” series, front page, July 29):

The events leading to Charles Jason Toll’s death highlight the dangers of prison procedures, especially for vulnerable inmates who suffer from mental illness. Particularly concerning is Mr. Toll’s solitary confinement, a disciplinary technique repeatedly identified as ineffective and counterproductive, and even as torture.

The Justice Department has found that solitary confinement of mentally ill people violates their rights under the Eighth Amendment and the Americans With Disabilities Act.

Solitary confinement worsens psychological symptoms and can trigger outbursts tied to the person’s feelings of hopelessness and loss of a sense of self through extreme social isolation and sensory deprivation.

Providing mentally ill people with appropriate and compassionate mental health care, including integration of psychiatric, psychological and psychoanalytically oriented treatments, is crucial in restoring a person’s identity, alleviating feelings of loss and distress and reducing violence.

Mr. Toll’s solitary confinement, suffering and death were avoidable, and again show that the mentally ill are more likely victims of violence, not the perpetrators.

SUSAN McNAMARA
Middletown, Conn., July 30, 2014

The writer is a psychiatrist.

_____________________________

When I was a patient in May and June 2014 at New Britain’s Hospital of Central Connecticut, Dr Michael Balkunas regularly imprisoned me in a horrific seclusion cell, without a single amenity but a concrete built-in bed and rubberized mattress, for nothing more than making too much noise for the approved hospital milieu. In fact, several nurses took it upon themselves, with Dr Balkunas approval, to do the same. This became literally routine. I was NOT, as is required by the Centers for Medicare and Medicaid, in IMMINENT danger of causing severe harm to myself or others. No, I was loud, disruptive and uncooperative, and I was rude. Period.

My first reaction when the double doors locked behind me was immediately to start screaming, at the top of my lungs, from the base of my lungs. But screaming brought no one. Okay, they did soon come in at me with three IM injections, but they came back every time with IM injections anyway, because as I took to calling it, these were part of the drill, they were “punishment injections.” I was pushed onto my stomach and shoved into the mattress so I couldn’t breathe and injected whether I liked it or not. I tried to say, “STOP! I will take the injections, just don’t hold me down.”

But sometimes they didn’t listen to me, and held me down anyway, and I got scared that they would kill me, because it didn’t matter that I didn’t struggle. There were four of them to the one of me, and they expected me to fight and so they forced my face into the mattress and held me tight, hard, and with all their weight….until I felt my breath go out of me. Did they have any idea that I was NOT struggling, that I felt I was going to die? Did they have any idea that they were killing me?

I don’t know. I don’t know. All I know is that I felt in mortal danger when they wouldn’t let me just accept the injections on my own, in my arm, but insisted on giving them to me by force in the buttocks, even when I said I would take them voluntarily.

Then they would leave and lock the double doors. And I would scream, and NO ONE would respond, even though I eventually learned that they could not only hear me through the intercom hidden somewhere in the ceiling, they could also talk to me. They wouldn’t but they could have. When screaming brought no one, I would strip and urinate on the floor, and I would defecate too as much as i could, and smear everything on the walls and floor. I would even eat it and paint it on my body. I didn’t care, I DIDN’T CARE! I just wanted someone to come in and help me.

Several times I washed and colored my hair with urine, thoroughly. But no one came back for hours. The urine, which completely soaked my hair, had time to dry completely. Not that they cared or noticed. If they had, they said nothing. It was nothing to them. Only Barbara RN asked me what was in my hair, and insisted that she wash it out when finally they released me. I went with her to the shower-tub room and allowed her to do so, but only one other person was kind enough to notice and do that. Everyone else just released me and expected me to somehow be reformed and “better” after my hours of punishment.

Of course that wasn’t the case. I got worse, much worse. I started defecating in my bedroom, at any hour,for any reason, any time I was frustrated or angry. They decided I had “borderline personality disorder,” that I was simply manipulating them. They failed to see that they had traumatized and broken me. They failed to see their continuing role in my behaviors…which were getting worse and worse the more they punished me. Every time they secluded me, or four-pointed me, I regressed more.

Dr Balkunas actually decided to commit me to the State Hospital claiming it would help me “get better.” But really he was just in punishment mode. You could tell, because he wasn’t using any of the methods that you are supposed to use for REAL borderline patients….If he really believed I was BPD he wouldn’t have kept at it. But he knew from my brother, a psychiatrist too, and my own psychiatrist, that I do not have BPD, so that was bogus and just an excuse to torture me. He didn’t really think I had BPD. He just needed an excuse to use solitary confinement and he knew that schizophrenia was NOT a good reason. A very BAD reason in fact, so he invented a secondary diagnosis to use. But the thing is, there are other therapies you are supposed to use in BPD, and he never bothered to treat me with anything but punishment and then threw up his hands and said, Well, the antipsychotic drugs take time to work, so you will go to the SH until they do.

Bastard! He gave up on me without even trying to help…so-called saintly doctor. Just a bastard! Because torture doesn’t work to make me better, he decides that I am the one at fault????? Well GO FUCK HIM UP THE ASS WITH A BROKEN GLASS JAR!

HOW TO PREVENT A CHOKING FIT

1. CLOSE YOUR MOUTH AND BREATHE THROUGH YOUR NOSE.

This will make you realize you CAN breathe just fine and immediately stop the panic.

2. WHILE BREATHING THROUGH YOUR NOSE, gently try to push the food item back up into your mouth, or swallow it if you can.

 

I figured this out while living alone. I would panic when I felt myself choking. It works like a miracle, because it is usually a spasm in the upper throat, near your mouth, and not a closed off pharynx that causes coking sensationss. You just have to understand that you CAN still breathe through your nose and that will end the panic. Once the panicky feelings are over, everything is easier to deal with and you can usually spit out the food or even find a way to swallow it. But at least you realize that you are not imminently going to die, which is a good thing to know.

 

Hope this advice helps someone. If it does, I would love some feedback. I have offered it to friends, and they have loved it, found it useful too, so I know it works.

 

Best wishes to all,

 

Pam

Nude Schizophrenic in Restraints While Bored Nurse Looks On

Actually I “deserved” four-point restraints. I was “violent.”

Nude Schizophrenic IN restraints While Bored nurse Looks On
Nude Schizophrenic patient in 4-point restraints 

But I want to explain what “deserving” restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut) means in 2014. I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion and restraints when essential, when a patient is absolutely out of control and extremely violent, and cannot be controlled in any other way.” Trust me, I know, because they have said this to me.   But what you need to know is that they are NOT talking about some 300 pound man hopped up on PCP, waving a machete. For one thing, that person, whom I believe to be largely mythical at least in ordinary psych units, or if real now largely confined to correctional and law enforcement settings, the person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I. And let me tell you about me. I will turn 62 years of age in November. I am 5 feet  3 inches tall, weigh, maybe 110 pounds on a good day, and have been consistently described as “poorly muscled.” I am also unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the HOCC nurses/security guards knew and used to their advantage when subduing me.   I also want you to know that I am a decades-long vegetarian on the principle of non-violence — to people as well as to animals. I have opposed the death penalty since I was a nine year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted “criminals” the way we do now.   Yet in every single hospital I have been in since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either physically holding me down by brute force, two people to each limb and one to my torso (this was at the only 2 hospitals  that did not actually resort to mechanical four-point restraints– compared to the dozen others that did), they would routinely inject me with one to three drugs as chemical restraints.   I am the rule, not the exception to it, of their supposedly “extremely violent mental patient” who is so OOC that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical example of the person they claim they absolutely must have the right to resort to violence against, for their own safety and mine.   Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, in the Emergency Department, this is what happened, and I kid you not: I came in by ambulance, involuntarily, in the sense that I did not want to go but was brought in by EMTs and given the “either the easy way or the hard way” choice by police. But I did not resist it or fight. I was not restrained in the ambulance. in fact, I was mute and merely handed them my med sheet and my detailed Advanced Directive, on the first 2 pages of which is the important information about my trauma history and the critical need to know points about how to deal with me.   When I arrived I was quickly shunted to the psych crisis section and into a curtained off cubicle. No one took my cell phone from me, or the single book of my artwork that I had managed to bring with me. So I texted everyone I could for as long as I could. For a while I tried to obtain a crayon to communicate with, eventually and in desperation, writing with ketchup on the outer carton of my dinner container, begging for something to write with. Instead of helping me out, the head ER nurse penned me a note saying that I would not get anything to write with, that either I spoke out loud or she would not listen to me. How very odd and evil that she wrote this to me! She didn’t speak to me, she wrote it, as if I were deaf, even while saying that she knew I could speak and would not talk with me unless I did so… The idiocy of that act just sends sparks of rage through my brain even now.   She later spied my art book next to me on the gurney, and suddenly rushed me, snatched it out from under my thigh and raced away with it, holding it triumphantly as if she had won a prize. I was incensed. Why hadn’t she just asked me for it? And how did I know what she was going to do with it? Would she keep it safe and sound? Actually, though, I mostly just reacted instinctively: Someone had stolen the only thing I had of my own in my possession, and she had simply snatched it away from me, without a word or even a polite request. So I did as anyone would do, I think. I  raced up behind her and snatched it back!   Well, that was a mistake. That was bad, that was bad bad bad. I heard people groan and swear. I was grabbed from behind by two security guards and the book was wrenched from me again. Remember, I was mute so I couldn’t say anything, but I tried to resist, tried to gesture that the book was mine and she had no right too take it from me. Instead of explaining that she would protect  it and take care of my things, people started talking about how I had attacked the nurse, had assaulted her…She told them to put me in seclusion. The guards dragged me, resisting in panic, towards this hidden room, and I heard another nurse warn them of my medical history with a torn left rotator cuff. Hearing this, the guard on my left side, grabbed my shoulder and wrenched it higher until I let out  a blood curdling scream, wordless but vocal. “Aha! I thought you could make sounds!” he said in triumph, wrenching me again until I sobbed in agony. Then they dumped me in the seclusion room, with only a hospital johnnie on me, and locked the door behind them.   Even though I had no words to speak my rage and panic, I screamed and screamed. They came through the door with needles, held me down and injected me. Then, when in a rage reaction, I disrobed, they decided to four-point restrain me. I heard a guard say, “we really have no reason to restrain her, you know.” But the other said, “It doesn’t matter, we will find a reason.” So they did . Terrified, I did not resist, because they held me down by the left shoulder causing me so much pain I was afraid they would hurt me permanently. I also hoped upon hope that if I didn’t resist, they would let me out quickly.   Believe me, I had been through this routine enough to know what to try to do to minimize the consequences and the damage…   Fast forward to my being sent to the psych unit, about which I no longer had any choice, being labelled violent now and OOC as well as mute and schizophrenic (I hate that word but they used it).   When the doctor who admitted me, Dr. Michael Balkunas, came to see me the next day, I was still mute. He asked me how I was and I gestured my need for a writing implement to answer his questions. He coldly told me that he would not speak with me if I would not talk out loud. Then he got up and walked out the door, with nothing more to say. I was by then so upset and outraged that I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder. This was not intentional, not that I recall, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ER on his orders, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could.   Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal.  Enraged, his face beet-red, he bellowed at the nurses to order guards to force me into “Seclusion! Seclusion! Restraints! Restraints!” Before I could do anything or even assent to walk there, I was bodily dragged down the hall by my injured shoulder, to one of the most horrifying seclusion suites I have ever seen. A set of two cells, each lockable from the outside, completely barren and cold except for a concrete bed set into the concrete wall, with a plastic mattress on it. Nothing else. No commode, no bed pan, nothing but two obvious cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door a room away, so I was thoroughly alone and soundproofed from the rest of the unit, and walked away.   I panicked immediately, and urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Not a word. I did not even understand at that time that there was an intercom they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I KNEW what would happen, I knew this because it was SOP. But I was freezing in there, with the A/C on full bore and at 110 pounds and a history of frost bite I cannot tolerate being cold. I also had NO inkling as to how long they would keep me there, one hour or sixteen. All I knew was that I could not tolerate the isolation, one, and I would not survive the freezing temperature, two.   So I took the urine-wet johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it as if to strangle myself. It was useless of course, because I couldn’t keep pulling it without letting go and then I would breathe. And I didn’t want to die, I just wanted it to LOOK as if I were strangling myself so someone would come in and I could explain that I was COLD!   Well, finally the intercom crackled to life and someone said, “Pamela, take that away from your neck now.” I gestured something that clearly indicated, “I’m freezing cold!” The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but in clear gestures, “I need something warm to wear!”   Well, this was a battle I was destined to lose, of course. And eventually but not so quickly as to indicate that they were seriously concerned about my safety, guards and nurses entered the room, along with a gurney, and they did as they had threatened,  injuring me in the process. They grabbed me and hoisted me onto the gurney and locked me into leather restraint cuffs, in a painful and illegal spread-eagle position, despite my groans of pain and protest, then they refused even to cover me with a blanket. Someone threw a small towel over my lower torso and that was all. They they positioned an aide at the door and trooped out.  I screamed my lungs out, and gestured my desperate need for water and warmth, but the aide simply ignored me, saying she wasn’t permitted to talk to me, and couldn’t get me what I needed.   That was how violent I was. And that is how the most violent patients are treated and why they MUST be restrained, for their own safety and the safety of others…Right? NOT!   ALL the other times I was secluded it was because i was disturbing the peace of the unit. I was loud and complaining, or simply “agitated” because i walked the halls too much. That was it. That is the rule not the exception, and if you read my posts about my incarceration at the Hartford Hospital Institute of Living in the winter of 2013 you will get a similar picture. I am not the 300 pound crazed man on PCP wielding a weapon, no, I am a small, elderly woman who is non-compliant with the unit milieu and wants only to be warm…that is about it. But each and every hospital claimed that I had to be restrained, that they had NO alternative, that I was so violent that they had no choice, even though it often took only one or two people to do so, because I didn’t  resist or  say a word, just lay there while they pinioned me to the bed.   Now you tell me that restraints and seclusion are necessary ‘modalities of treatment” that cannot be done away with because they might be needed in an emergency. Emergency schmergency. I am that emergency and they were and are NEVER needed, EVER.

Poem about Radical Forgiveness

 

Forgiveness or anger? Its your choice....
Forgiveness or anger? Its your choice….

TO FORGIVE IS…

To begin and there is so much to forgive

for one, your parents, one and two,

out of whose dim haphazard coupling

you sprang forth roaring, indignantly alive.

For this, whatever else followed,

innocent and guilty, forgive them.

If it is day, forgive the sun its white radiance

blinding the eye;

forgive also the moon for dragging the tides,

for her secrets, her half heart of darkness;

whatever the season, forgive it its various assaults

– floods, gales, storms of ice –

and forgive its changing; for its vanishing act,

stealing what you love and what you hate,

indifferent, forgive time;

and likewise forgive its fickle consort, memory

which fades the photographs of all you can’t remember;

forgive forgetting, which is chaste and kinder

than you know; forgive your age and the age you were when happiness was afire in your blood

and joy sang hymns in the trees;

forgive, too, those trees, which have died;

and forgive death for taking them, inexorable  as God; then forgive God His terrible grandeur, His unspeakable Name

forgive, too, the poor devil for a celestial falll no worse than your own.

When you have forgiven whatever is of earth, of sky, of water, whatever is named, whatever remains nameless

 

forgive, finally, your own sorry self, clothed in temporary flesh,

the breath and blood of you already dying.

Dying, forgiven, now you begin.

 

by Pamela Spiro Wagner in “We Mad Climb Shaky Ladders” (Cavakerry Press 2009) also featured in “Divided Minds: twin sisters and their Journey through  schizophrenia.”

Hospital Seclusion Room…plus

Hospital Seclusion Room
Hospital Seclusion Room

 

When I was at New Britain General Hospital in the spring of 2014, the security guards stripped me naked and left me in the freezing and barren seclusion room…This is a depiction of a younger woman largely because no one gives a damn about what happens to a 61 year old woman anywhere..but the seclusion room is pretty danged accurate.

 

Old Movie Star in conte crayon and charcoal
Old Movie Star in conte crayon and charcoal
Dr Geuss: Papier Mache Goose, made in Vermont for the Human services dept. of the North East Kingdom

New Art: Papier Mache Goose and Turtle Painting

Dr Geuss:  Papier Mache Goose  made for the Northeast Kingdom of Vermont's Human Services
Dr Geuss: Life-size Papier Mache Goose made for Vermont Northeast Kingdom’s Human Services

 

Dr Geuss: Papier Mache goose made for Vermont's North East Kingdom's Human Services
Dr Geuss: Papier Mache life-size goose made for Vermont’s North East Kingdom’s Human Services
Sea Turtle in Turquoise and Blues...Water soluble oil pastel  c. 7 inches by 6 inches
Sea Turtle in Turquoise and Blues…Water soluble oil pastel c. 7 inches by 6 inches

New Poem: On Not Speaking

ON NOT SPEAKING

 

When I went temporarily mute at age sixty,

it sparked no visual wonders.

After decades schooled by dictionaries,

vocabulary categorized the world:

“precipice,” “acrid,” “blanch;”

words even defined my senses.

But one can fall into

speechlessness for reasons

beyond pathology

though these may not seem reasonable

to people who believe that only talking things out

or about them makes sense.

Speaking or not, I knew

when silence was less insane

than trying to be heard

by those who would rather hurt me

than pay attention.

But if, as they say, silence is so eloquent,

why couldn’t anyone hear

what I so desperately didn’t say?

 

 

Beyond Recovery: Stage Five

Pamela Spiro Wagner:

I want to reblog this brilliant post by Anne C. Woodlen and then i will add my own editorial comments if i can in a later post or edit. In the meantime, i think it speaks for itself and says just about what i would want to tell a lot of young people newly diagnosed with bpd or did or add or even bipolar disorder and getting on disability, preparing for a life “in the system” – it sucks and it isn’t worth it unless you are floridly psychotic. And even then, don’t believe what they tell you about antipsychotic drugs. There ain’t no such medication, only sedatives that may or may not quiet things down temporarily. The only way out is through, if you can do it with a wise and caring guide and community. Don’t get stuck as i am, on multiple antipsychotic drugs, addicted to them so that getting off them only means you get more psychotic than ever. Psychosis need not be a lifelong problem, but it certainly will be if you keep taking high doses of the drugs and never explore other options.

Originally posted on Behind the Locked Doors of Inpatient Psychiatry:

Hello,

My name is Dustin and I live in Michigan. When I was seventeen years old my mother put me in a psychiatric hospital called Forest View. The abuse I felt violated me to the core! I felt like I was being raped having to submit to all the rules, the bullying and the emotional abuse. To have your dignity removed when you are an innocent patient and just want genuine, kind, gentle care, and get unprofessional jerks who you can tell are fake and just care about getting paid is a horrible experience.   If anything it only caused me more traumas with the trauma that I already had. I am now twenty-two years old and live on disability while also living my life as a hermit because now I am afraid of people due to the awful treatment I endured.  I was diagnosed with Borderline Personality Disorder by a REAL…

View original 856 more words

WAGblog: While I breathe, I hope": Surviving Schizophrenia

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