New work in progress by pamela spiro wagner, a large collage about 2′ by 3′ made of tiny scraps of torn up reproductions of Gustav Klimt’s artwork and reassembled as my version of The Kiss…
New work in progress by pamela spiro wagner, a large collage about 2′ by 3′ made of tiny scraps of torn up reproductions of Gustav Klimt’s artwork and reassembled as my version of The Kiss…
I do not know where this photo came from originally nor who made it but i obtained it from Sarah Grace Wolfram’s facebook page, so i am crediting her. In any event, what it says means the world to me.
I DID NOT CHANGE…IN FACT, MAYBE I NEVER NEEDED TO CHANGE, I JUST WOKE UP…to the fact that the world i had been living in was wrong.
I don’t know what to do. My skin is thinner than gossamer yet people think i am thick-skinned and hide-bound as a hardbound book packed with information and feeling nothing. They have no idea i feel everything from the words people speak to the experiences they have and they describe. I feel it all in and under my skin down to my marrow, i feel, how to explain the knife-edge sensitivity of my life? When Jesse blithely talked about breaking glass and stepping on it, the shard penetrating his foot, MY FOOT felt the glass pierce my arch and plunge straight up through my entire foot until it broke the skin at the top of my foot, and i had to muffle my scream of pain so i did not embarrass myself…it is always this way.
I do not “like” dogs but i feel them too. I feel them! I know where they need to be scratched under their chins and between their ears…always. And why? Because i myself feel it under my chin and between the ears. I love cats, yes. Dogs and cats both understand that i feel them. All animals know that i feel them. But it is too much for me. To feel everything and all that pain. In medical school i could not draw blood from another student because i was too inexpert at it and i felt the pain i was causing him…and despite my hardened exterior, i feel everyone’s pain and sensations, except perhaps their pleasure….i might be able to feel that too, but i distance myself from that because it feels like an intrusion on their privacy. When teddy lays his head on someone’s shoulder, i can feel that pressure on my shoulder. I do not know whether Teddy feels pleasure or relief, that is to say, viscerally, i could feel it, but i must not enter that feeling because it is too private.
I also know what people are thinking. I read people’s minds. They speak what they think to me, and i hear it out loud because they think too loud, but then i get confused between their thoughts and what only i can hear and i respond to what i heard out loud. Then things go haywire, because they say they never said such a thing, and others agree, and i look “crazy” because they did only think them. But in fact, i did hear them think it and they spoke it to me out loud with their thoughts, and my only crime was not knowing the difference and responding out loud. In such cases, they always have the benefit of plausible deniability, and i have nothing…but the truth of knowing what i know, which is that i know what is really going on.
This exquisite sensitivity is both a gift and a curse. Over the years the brutality of hospitals and “treatment” has forced me to try to ignore what i feel or at least pretend to. But things keep happening between me and others that force me to know more than i would ordinarily — if i did not have this gift/curse — want or have to know.
I was always told, “you are just paranoid” …”this is not happening”. And was made to ignore the reality of what i felt was going on around me, rather than speak about it and explore it. But i knew it was true, it was real, it was happening. You see, i feel people too, the way i feel animals, and i understand them, and i knew that they could not bear the fact that i heard their thoughts and knew what they really thought.
i always knew it was not paranoia, just truth they needed to conceal, due to fear and other difficult emotions. So they labeled me paranoid as a way to escape from admitting that i was able in fact to read their minds….
There is more but enough for now.
All I want to say is that someone connected to me died on Saturday and I have reason to believe it was suicide. This is what I wrote to four people:
“The assistant building manager —– died — i am certain it was suicide — Saturday…i feel to blame, to blame, to blame. It is not that i knew or could have helped her, no, i feel like i caused her to kill herself. I’m shaking in –what? — terror, something! Even the music on Pandora is blaming me. What have i done?”
For hours there was no reply. I located two cigars in the bottom of an old purse, knowing what I had to do…I planned to place this photo:
and let fate determine the consequences, both what eventuated in terms of the voices and what happened after that. All I knew is that even Pandora “radio” is blaming me for the death — suicide as I suspect — and I do not know what to do. I have already been responsible for two suicides of friends. How can I take this again>???
Then my shrink brother wrote me back, after I thought he was long ago in bed and asleep. I quote him in part: “you feel guilty for taking care of yourself. I hope that makes sense. I know it applies to me, so I’m not just saying it. Let it go. You had nothing to do
with her death. It’s sad, if it indeed was suicide, but just leave it at
that. I do think it’s more than symbolic that the person you’re guilty about was the manager of the building you hope to leave for good soon.”
Then he suggested that I take an Ativan (for a change?) and go to sleep. I wasn’t going to, I was going to do something that was ordered of me, and which I felt was essential. But I feel a little less alone, and feel as if I can hang on another night. At least he didn’t get angry and tell me I am not his “top priority”…as if I needed that rammed down my throat ever or again.
I may not make it all night, but if I can sleep it would help a lot. I barely slept last night at all and all these songs on the Bruno Mars’ station are getting to me. I am crying because of how bad I feel…
Will I get through the night? Only the future can tell. I will take the Ativan, against my better judgement, and I already took the half that I refused of Geodon, much against my judgement because otherwise I would be blamed for everything that happens from now on. I do not need the Geodon, but I know what the nurse will say if I refuse it. Until I get to Vermont and then I am free to do what I choose, and if that means — well, I won’t go there right now.
Thank you for listening, if anyone out there really is — either there or listening.
This article is an important OPEN LETTER that I just found at BEYOND MEDS:
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
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.
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  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.
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 . 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!
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.
(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:
LONDON ― A novel treatment may help patients with schizophrenia confront and even silence the internal persecutory voices they hear, new research suggests.
Avatar therapy allows patients to choose a digital face (or “avatar”) that best resembles what they picture their phantom voice to look like. Then, after discussing ahead of time the things the voice often says to the patient, a therapist sits in a separate room and “talks” through the animated avatar shown on a computer monitor in a disguised and filtered voice as it interacts with the patient.
In addition, the therapist can also talk by microphone in a normal voice to coach the patient throughout each session.
In a pilot study of 26 patients with treatment-resistant psychosis who reported auditory hallucinations, those who received 6 half-hour sessions of avatar therapy reported a significant reduction in the frequency and volume of the internal voices ― and 3 reported that the voices had disappeared altogether.
“Opening up a dialogue between a patient and the voice they’ve been hearing is powerful. This is a way to talk to it instead of only hearing 1-way conversations,” lead author and creator of the therapy program Julian Leff, MD, FRCPsych, emeritus professor at the Institute of Psychiatry in London, told meeting attendees.
Dr. Julian Leff
“As the therapist, I’m sharing the patient’s experience and can actually hear what the patient hears. But it’s important to remind them that this is something that they created and that they are in a safe space,” Dr. Leff told Medscape Medical Newsafter his presentation.
Two presentations were given here at the International Congress of the Royal College of Psychiatrists (RCPsych) 2014 the day after the study results were released in the print edition of Psychosis.
According to the investigators, 1 in 4 people who hear phantom voices fail to respond to antipsychotic medication.
Dr. Leff explained that this program started a little more than 3 years ago, after he had retired “and could start thinking clearly again.” He had been interested in the phenomenon of phantom voices for more than 40 years.
“Our mind craves meaningful input. That’s its nourishment. And if it’s deprived of nourishment, it pushes out something into the outside world,” he said. “The aim of our therapy is to give the patient’s ego back its mastery over lost provinces of his mental life.”
The researchers used the “off-shelf programs” Facegen for the creation of the avatar faces and Annosoft LIP-SYNC for animating the lips and mouth. They also used a novel real-time voice-morphing program for the voice matching and to let the voice of a therapist to be changed.
In fact, Dr. Leff reported that one option the program provided changed his voice into that of a woman.
After a patient chose a face/avatar from among several options, the investigators could change that face. For example, 1 patient spoke of hearing an angel talk to him but also talked about wanting to live in a world of angels. So the researchers made the avatar very stern and grim so that the patient would be more willing to confront it.
Another patient chose a “red devil” avatar and a low, booming voice to represent the aggressiveness that he had been hearing for 16 years.
For the study, 26 participants between the ages of 14 and 74 years (mean age, 37.7 years; 63% men) were selected and randomly assigned to receive either avatar therapy or treatment as usual with antipsychotic medication.
The length of time for hearing voices ranged from 3.5 years to more than 30 years, and all of the patients had very low self-esteem. Those who heard more than 1 voice were told to choose the one that was most dominant.
Dr. Julian Leff shows examples of faces used in avatar therapy at RCPsych 2014.
During the sessions, the therapist sat in a separate room and played dual roles. He coached the participants on how to confront and talk with the avatars in his own voice, and he also voiced the avatars. All of the sessions were recorded and given to the participants on an MP3 recorder to play back if needed, to remind the patients how to confront and talk to the auditory hallucination if it reappeared.
“We told them: It’s like having a therapist in your pocket. Use it,” said Dr. Leff.
All of the avatars started out appearing very stern; they talked loudly and said horrible things to match what the patients had been reportedly experiencing. But after patients learned to talk back to the faces in more confident tones, the avatars began to “soften up” and discuss issues rationally and even offer advice.
Most of the participants who received avatar therapy went on after the study to be able to start new jobs. In addition, most reported that the voices went down to whispers, and 3 patients reported that the voices stopped completely.
The patient who confronted the red devil avatar reported that the voice had disappeared after 2 sessions. At the 3-month follow-up, he reported that the voice had returned, although at night only; he was told to go to bed earlier (to fight possible fatigue) and to use the MP3 player immediately beforehand. On all subsequent follow-ups, he reported that the voice was completely gone, and he has since gone on to work abroad.
Another patient who reported past experiences of abuse asked that his avatar be created wearing sunglasses because he could not bear to look at its eyes. During his sessions, Dr. Leff told him through the avatar that what had happened to the patient was not his fault. And at the end of 5 sessions, the phantom voice disappeared altogether.
Although 1 female patient reported that her phantom voice had not gone away, it had gotten much quieter. “When we asked her why, she said, ‘The voice now knows that if it talks to me, I’ll talk back,’ ” said Dr. Leff.
“These people are giving a face to an incredibly destructive force in their mind. Giving them control to create the avatar lets them control the situation and even make friends with it,” he added.
“The moment that a patient says something and the avatar responds differently than before, everything changes.”
In addition, there was a significant reduction in depression scores on the Calgary Depression Scale for Schizophrenia and in suicidal ideation for the avatar participants at the 3-month follow-up assessment.
A bigger study with a proposed sample size of 140 is currently under way and is “about a quarter of the way complete,” Dr. Leff reports. Of these patients, 70 will receive avatar therapy, and 70 will receive supportive counseling.
“In order for others to master this therapy, it is necessary to construct a treatment manual and this has now been completed, in preparation for the replication study,” write the investigators.
“One of its main aims is to determine whether clinicians working in a standard setting can be trained to achieve results comparable to those that emerged from the pilot study,” they add.
“Fascinating” New Therapy
“I think this is really exciting. It’s a fascinating, new form of therapy,” session moderator Sridevi Kalidindi, FRCPsych, consultant psychiatrist and clinical lead in rehabilitation at South London and Maudsley NHS Foundation Trust in the United Kingdom, told Medscape Medical News.
Dr. Sridevi Kalidindi
“I think it is a novel way of approaching these very challenging symptoms that people have. From the early results that have been presented, it provides hope for people that they may actually be able to improve from all of these symptoms. And we may be able to reduce their distress in quite a different way from anything we’ve ever done before.”
Dr. Kalidindi, who is also chair of the Rehabilitation Faculty for the Royal College of Psychiatrists, was not involved with this research.
She added that she will be watching this ongoing program “with great interest.”
“I was very enthused to learn that more research is going on with this particularly complex group,” said Dr. Kalidindi.
“This could be something for people who have perhaps not benefitted from other types of intervention. Overall, it’s fantastic.”
International Congress of the Royal College of Psychiatrists (RCPsych) 2014. Presented in 2 oral sessions on June 26, 2014.
Original Article From MEDSCAPE:
CLICK ON THE PICTURES TO ENLARGE THEM.
There were few rewards for behavior that toed the line at New Britain General Hospital (HOCC). Mostly it was punishment. If I was found with even a stub of a forbidden pencil, I was carried off to the Supermax seclusion cell, stripped naked and left alone.
At that point, being teeth-chatteringly blue with cold, I would swat a nurse in such a way that she would feel assaulted and bring on the goon squad of “I want to hurt someone today” guards to put me in four point restraints.
Why would I induce this? Because then they would at least cover me up afterwards with the mercy of a sheet, for modesty not warmth mind you, and I would beg for a blanket in vain. But at least my body would be protected from head to toe from the blasts of the A/C up full bore, and I could rest after I had had screamed out my lungs and my despair for a lonely twenty minutes or more.
No one cared, no one heard or paid any attention. The doors were double, and the cell was utterly soundproof. NO one ever even knew I was locked in there. When my screaming was too heart-wrenching for the softer ones of the staff down the hall in the room where they had retired to, they simply turned down the monitor and intercom so they didn’t have to listen.
I know, because I heard when the telephone rang, telling the person sitting outside the inner door they could turn it back on now (after I had quieted down). This was brutality of the nth degree. But they always called it treatment for safety, though I mentioned the CMS regs to the security guards one day as they were inflicting their usual pain in order to bring me to the room, and they stopped in their tracks.
“You’re kidding,” one said, “Its true that the only legal reason for seclusion is Imminent Danger to self or others?” (I had been brought there for disturbing the peace…)
I nodded, Look it up. She looked gravely at the others. but proceeded o do what she had been ordered to do anyway. And I proceeded to behave in a wildly immodest and terrified fashion likewise…knowing I would be left alone and freezing for at least two to three hours, no matter how fast I calmed myself.
They didn’t care. it was PROTOCOL…
I haven’t spoken out loud in several weeks
bullied into a frightened by myself silence.
Though what does “speechless” mean
in these days of text-to-speech software,
with its choice of Vikki or Samantha or Victoria voices,
Or when I’m possessed of a blogging platform
and writing fluency enough to speak my mind to my heart’s content?
Still, being mute is not a manner of speaking.
i tell you I could speak, I can talk. Nothing physical impedes
my tongue, or locks my lips,
except my brain’s hallucinated snarls, like Jerry Mahoney
and Charlie McCarthy thrown into surrounding shadows
ordering up this stoppage, blockage, blockade.
Now, like that fire-fangled bird at the end of the mind
feathered unlucky, tarred, locked in golden cage
my voice remains only a memento
of everything that I wanted
to say, but couldn’t get out, I couldn’t get out, I couldn’t get it out…
*In the Greek myth, Philomela is raped and has her tongue cut out by Tereus, the husband of her sister Procne. Rendered mute, Philomela weaves a tapestry detailing the crime to inform her sister, who, enraged, takes revenge on Tereus. At the end of the story, both Procne and Philomela are transformed into birds. Some versions have Philomela become a nightingale, the female of which does not sing. In other versions she becomes a swallow, which is a non-singing bird.
I think it is time to explain the trigger for my being mute these five days now, and what happened to start the voices unloosing their barrage of hatred on me. In order to do so, I take a huge risk, because I may unleash more of what happened rather than less. But at least part of what happened was real, the trigger was at least, and it disturbed me deeply. I need also to say that when I tagged yesterday’s audio file “abuse” as well as “health” I meant it. It is almost always abuse of some sort, verbal, emotional or physical abuse that triggers the voices and self-hatred has in the past triggered muteness.
So let me be up front: It was “Alice’s” comment five days ago in which she said, “I think you are a bit of a bully”…which was the specific trigger for all of this. Now, as I read through it — reposted below — I see that nothing she wrote has any bearing on either the post she commented under (which I didn’t write) or anything else I have had to say. But first let me take it point by point. Note that Alice’s comments, for clarity, are in color.
Alice, you wrote: “I must say there is no consistency in your writings. You say about how well Yale New Haven Psychiatric – Hospital treated you and the next entry indicates the opposite- how awful they were to you.”
I must write about inconsistencies and the facts as they happened, and I am sorry if that discomfits you, Alice. But the first experience in the early spring was very gentle and positive, and the other, as I wrote before, was brutal. Nonetheless that is not an “inconsistency in my writing” just an inconsistency in my treatment. You must be someone who is very unhappy with the world as the world tends to be “inconsistent.” Even the weather has a habit of changing, at least it is famously so in New England and I suspect that nowhere in the US has entirely “consistent weather.” Of course there are those people who need hobgoblins…
Alice continues on the issue of consistency: “You say you don’t like anti-psychotic medications yet you take them (and you also don’t like anti-depressants – yet you take them…”
In my defense,I think mature adults often do things they don’t like, even taking medications they don’t like. Most cancer patients hate chemotherapy but take the pills etc anyway. I don’t think merely disliking a medication is reason by and of itself not to take it. Nor to criticize anyone for being inconsistent. There are plenty of reasons to do things you may not like. Many people don’t like eating vegetables, but they sure as shooting ought to eat them!
On one other hand, I more than dislike antipsychotic drugs, I deeply distrust them. I do not believe they work. I do not believe they were developed on any scientific basis or are necessary on any but the shortest of short term bases, if that.
That said, on the other other hand, I both took and was forced to take antipsychotic drugs for decades, from the oldest Thorazine and Mellaril at doses up to 1500mg, to weekly IM injections of Prolixin, then on to Clozaril, which nearly killed me, transitioning to seizure-inducing Seroquel to catatonia-inducing Risperdal then eventually to 35 mg of Zyprexa, which made me gain 70 pounds. Given this history, I think I can be excused from blame for withdrawal-induced psychosis when I try to stop my present two anti-psychotic meds, a very real and difficult situation that a growing number of researchers and physicians now acknowledge, including Robert Whitaker and Joanna Moncrieff among others.
Alice notes: “for example why would you need your Zoloft reinstated when you had your sudden “depression” after it was taken away. )I thought these pills didn’t work.”
What I said was that SSRI’s do not work as their developers state they do. They do not relieve depression by selectively inhibiting serotonin re-uptake at the pre-synaptic neuron. Yes, they DO selectively inhibit this process, but it isn’t necessary, and it isn’t an anti-depressant mechanism. Why? Because the serotonin levels in depressed people’s brains have been shown NOT to be lower than anyone else’s. If you had read what I wrote, you would have understood that I indicated that SSRIs are not placebos, they are not inactive substances, so they do something. They are psycho-active, after all they alter serotonin levels! So they change something in the brain, and that change — any change – may make a depressed person feel better, temporarily. But I have never met anyone who felt permanently better on a single level dose of an SSRI and no one knows for certain what these drugs are doing. I think this is problematic. But I especially think it is FOUL and dangerous to tell a depressed person that they have a chemical imbalance of serotonin that the drug is regulating. That is just a downright lie.
As for my sudden “depression” when my dose of 75mg of Zoloft was lowered? Who can say what happened? It may have been that the nurse/director who was my protector at the hospital was away for a few days too at the time, and I sensed the difference…All I know is, well, what happened. I only report the events, neither justifying them nor attempting to make the case that Zoloft “works.” In fact, 6 months later at Yale, when I was down to 50 mg of Zoloft, Dr Milstein felt that I should just come off it entirely, which I did without difficulty. I have no wish to start it again
Oh yes, Ritalin you take but that’s for a “physical” problem so that’s Okay.
Yes, in fact that is the case. My question is, why is it any of your business and why do you care?
Alice, you then proceeded out of the blue to write: “I think you are a bit of a bully and I think that you think you are profoundly smart. But I’m not taken in…………”
First I want to say, Alice, that I’m not too concerned about my intelligence…I’m certainly not worried about you think about my intelligence, in any event. But it was here, where you called me a bully, that the voices were triggered. Instantly, specifically, instantaneously. In fact, the minute I read those words, the trouble began. And even though I managed to pen a calm enough response, my heart started beating rapidly and the voices muttering louder and louder in the background even as I wrote. I cannot explain — though of course this whole post is trying to — just what happened. I felt my ears explode with the pressure of deep sea diving and as if a huge bell were clanging in my head.
You called me a bully. Me, a bully? Why? Were you just reaching for the worst name you could call me? Certainly, it incorporates my worst fear in the world and it was as if you just knifed my jugular… I didn’t know how to defend myself. Before I knew it, the first thing that happened was that the voices zeroed in for an attack, snarling, blaming me for everything wrong I’d ever done. Believe me, they remember every detail! And more and worse, they blamed me for everything wrong ANYONE had ever done! Before I knew it, I was Dr Mengele, Heinrich Himmler, and Adolf Hitler rolled into one.
Did you, Alice, know this? Did you intend for this to happen? Did you want this shit to hit the fan and intend for me to feel so terrible? Did you want me to feel in fact God-forsaken? I sensed that you did. I sensed that you wanted me to feel desperate, and desperately alone. I sensed then that you wanted me to HATE myself and perhaps even to KILL myself as a response…After all, you called me a bully! You would only do that if you wanted repercussions to ensue: Bullies make people commit suicide, so wouldn’t the punishment for bullies be to kill themselves in turn? What else can they do to make up for the evil that they have caused? (NOTE: I would never ask anyone else to so punish themselves; only I myself can never be forgiven for the evil I have done. I am unforgivable, nothing I do can ever be forgiven…But you, Alice, who know me so well, knew this, didn’t you?)
You see, Alice, what you unleashed? Do you see?
No, you wouldn’t see. You couldn’t possibly see. You would have no idea, because you don’t know me at all. You don’t know anything about me, not in the way you pretend you do…The person “Pam” you think you know is all in your mind, a fantasy created out of your imagination to suit your own angry needs and purposes.
But the thing is, Alice, you know what? It is not I who am the bully in the end. I understand this now. I may be a lot of things, and I may be Evil, but I am not a bully. You do not know me. You know nothing of me but my writings. Even if lurking incognito on my blog you are actually one of the staff members at Yale or Hartford Hospital, pursuing me, you would still know nothing about me, not really, and would never be qualified to call me a bully. None of my friends have ever called me a bully. No one who has ever met me socially even briefly or just once has ever called me a bully. Why? Because I am nothing even remotely like a bully.
Instead, Alice. you have proved yourself to be an abusive person who lashes out at strangers and who says harmful and hurtful things to vulnerable strangers, regardless of whether you know these things to be true or not. Look in the mirror, Alice. Look yourself square in the face because you are angry and you are bitter, and you, Alice, YOU ARE THE BULLY.
Now, let me tell you something else. You think you can get away with it because you did not use your last name, safely tucked away at several states distance or at least protected by your anonymity.,. That because I don’t know who you are, I can do nothing about it. But ALICE, I have my methods of investigating and I know your last name. I also have two photographs of you — and I will post them and name you publicly right here on my blog if you EVER write anything cruel or abusive like this to or about me or to or about anyone else on my blog again.
I hope I make myself perfectly clear on this.
Now, you know what? I was going to go on to “disprove” the rest of your comment, but suddenly I realized I don’t have anything more to say you. Nothing you wrote holds any value .
I’m tired, and it has been a long devastating night. I am going to bed…We will see what the day brings. Whether it will bring back speech or more devastating voices I do not want to say. I can only hope things improve…If not, at the very least you know where I stand.
I know this audio file may be difficult to understand, but this is what happens when the voices go haywire…I can’t speak. And I cannot even tell you what triggered it, but something did. I tried to go to a Voice Hearers workshop on Tuesday about Taboo and Dangerous voices, but i could scarcely enter the building. I had to “get permission” just to open the door, and when I did, I could not stay…Just could not stay. Forget it. I’m worthless.
I am assembling my own private, so to speak, “treatment team” for recovery. This is because it turns out that to go to any facility for real no-drug no medication recovery, somewhere like Windhorse in Northampton, Massachusetts, or Cooper-Riis in NorthCarolina, you have essentially to be filthy rich. Neither place so much as returned my application email (supplication) once they knew I “only” had about — well, let’s just say that I could not afford their fees of up to $20,000 per month, and certainly not for the requisite six month program just to start with! So essentially, you have to be wealthy as Croesus in this country to get any help whatsoever to recover, or you are on your own.
Luckily a little family assistance does permit me to hire a few people to help me — which I know some people are not fortunate enough to do. So I did — I hired an art therapist this past week and I meet with her next thursday! This is something I really look forward to. While I do art daily, I do not usually express my feelings easily or spontaneously doing art. I have to think things through doing art. But i want to do it quickly and find out things or learn to let go and feel my way doing art. And I have never done art therapy, at all so I dunno even what it can offer, except that I cannot believe it won’t be helpful, esp now that I am done to 5mg Abilify as of Saturday. And no abilify at all by the following Saturday, if it turns out that I can tolerate the drop to nothing.
Now, I do take Geodon as well, so I think it will be fine. But we will see. So far so good. But I did say that I would take it more slowly if I ran into problems. Once the Abilify is out of my system, I will wait a little while, then start reducing the Geodon. No sense in waiting too long. If I have no difficulties apparent from the loss of Abilify, why wait? THEY thought i decompensated almost immediately at Yale New Haven Hospital from having “nothing on board.” My contention is that I decompensated due to the abuse I suffered at their hands, and as a result of their megadosing me with IM Haldol, torture for anyone.
That’s about all the news I have for now. And it is getting late so I’d better go to bed.
Oh, by the way, if the pictures look a bit different, it is because they are done with markers, copic markers for the most part, and not with colored pencils….So you are noticing my use of a different medium.
I just was released from the Yale New Haven Psychiatric Hospital and i regret to say that it was far from the kind and gentle “soft place to land” in a crisis that i remembered. Partly this was my fault, for wanting to not take the meds that i already knew would be forced on me, quite despite Dr Milstein’s assurance to my outside psychiatrist that he would never force meds or Zyprexa on me as “it doesnt work.”
No, I did not know that meds would be FORCED on me…Not until Robert Ostroff MD took over my care and made it clear he did not give a damn how I felt. He decided to punish me with massive doses of Haldol when I refused Zyprexa, and I know he is of an age to understand what he was doing. One, he is a Yale Physician, so he knew of the hearings in Congress back in the 70s where the Russian dissidents were complaining of TORTURE by Haldol injection, and where Congress actually decreed that the drug was in fact an instrument of torture when use on Russian citizens…He KNEW what he was doing to me, PUNISHING me. He just had the power to do it and could. So he did. He NEVER saw me to talk to me, NOT once. No, he just oversaw torture, and while Robert Milstein, MD (basically a good guy, if deluded into believing that psych meds are good for people) was supposedly on vacation, he too was available and did nothing to stop this. For that I do not forgive him…Or, I forgive him, but will never trust him to treat me again. No, I will never go back there.
In fact, I’m here to say that no hospital psychiatrist can be trusted when they promise not to force you to take drugs…that is what they are paid to do and are largely paid to believe in. It did me little good to try NOT to sound like i was ranting and raving esp when attempting to persuade either doctor or social worker in hospital to read Robert Whitaker’s ANATOMY OF AN EPIDEMIC or even borrow my copy of his MAD IN AMERICA, both books i find life and mind changing in a major way, even a year after i started reading them for the first time.
I dunno what to do though, in terms of meds. I function fine in between times in hospital, mostly. And so are the Abilify and Geodon helping or simply not Not preventing a relapse when it comes? There is reason to think that Geodon may be damaging my heart, slowly but surely. My EKG said something Dr Milstein refused to explain about a “probable infarct” but was that me, my heart or some general info on the EKG sheet? I wasnt allowed to look at it long enough and NO ONE answered my questions about it. Probably fearing i would stop taking the offending medication, which was true and i did anyway so they ought to have talked to me honestly.
But honesty is not a general policy in brutal psychiatric units where they restrain you, holding you down and bruise you to give you injections of Stat meds that are really ordered only because someone with the power to order them got angry and resentful…
I cannot sugarcoat my own demeanor during this stay. I was not a pleasant patient to anyone most of the time. And at the worst times i was likely considered horrendous. I screamed daily at the top of my lungs, i resisted their treatments physically and violently, i defecated on the floor of my room and even put handsful of shit across the walls, and apparently i even threw a cup of coffee at someone…though i do not remember doing this and the report may have been distorted by second hand information about me, coming back to me. But i was a horrible patient and one aide even called me, every chance he got, a dog, a pig, a swine….in covert secret ways, audible and openly but when no one else was around to hear him except the other aide who would back up his story that it never happened.
On the other hand, there were a few kind and compassionate understanding people who did not throw my smearing shit in my face or even take my calling them horrible names (bestowed on my vocabulary by a former friend who called me them) personally.
I need to enlist just such people for private duty help for the next relapse, if it should happen…but how? Ads on hospital cafeteria walls? How to vet the sign-uppers, so i do not get attendants that will abuse me in my own home? How to trust, and when, what they or references tell me? So many references are positive and therefore lies that they are tantamount to useless unless secretly negative!
Decisions decisions….must be made well before anyone is needed to help me at home….one to one, constant observation-plus!
Well, i am still recuperating, and worried about deep hip pain though seemingly improving is scary, reminding me of the avascular necrosis bout i had about five years ago. Was it meds induced? possibly because it healed magically in a month post radiographic dx, with a stay in psych hospital and change in those meds. But if i dont withdraw abruptly from, say, topamax or geodon, but slowly, will the hip pain continue, or evolve into worse than just, say, pain, but real bone destruction ans disability? Can i take any risks at all at age 60 with drugs that have no proven track record research wise, and seem to help me but may only being doing harm?
Today I have a guest poster, someone who has been contributing a lot of comments to my blog and who wrote one that I thought deserved a post of its own. Without a lot of introduction, since she tells it pretty much as it is, I offer the following: one brave woman’s unique and amazing recovery story.
From “LADY QUIXOTE”:
I believe it is a normal part of grief to have moments of hearing and seeing those close to us who have died. This is true of our pets, as well as the people in our lives, who have recently passed on. I’ve experienced it, as have many people I know, most of whom have never been diagnosed with any kind of mental illness.
What I don’t know, of course, is whether these experiences are “real,” meaning do they exist independently of our own grieving mind? I believe that at least some of these ghostly grief visitations may be real. The reason I think this, is because on two separate occasions, with two different deceased loved ones, my paranormal experience was witnessed and experienced simultaneously by other people who were with me at the time.
Life is a mystery. Death, even more so.
When I feel that someone who has recently died may be trying to communicate with me in some way, I tell them that I appreciate their caring enough to contact me, and that I miss them and hope they are in a wonderful place where I will join them someday – but to please refrain from contacting me again, because it is a “trigger” for the schizophrenia I was diagnosed with in 1967. I have not been bothered with continual voices since 1969, and I don’t ever want to go back to that miserable real-life-nightmare, again.
In most cases, when I make this request, the “visitation” immediately and permanently stops. On the rare occasion when it has not stopped, I prayed to my Creator for help and protection, and I also studiously ignore the voice or vision, and in every case it soon stopped.
My voices started when I was 14, shortly after my paternal grandfather died. His spirit seemed to visit me twice, the first time immediately after his death, when I was sitting at my desk in school and had no idea that my grandfather was about to die. Suddenly, I “knew” he was dead. It was so real, that I started to cry, right there in the classroom. When I got home from school that day, my mother met me at the door and said, “I have some bad news…” I stopped her and said, “I already know what it is, my Grandfather ‘R’ died today.” She asked me how I knew, and I said I “just did.”
A few months later a friend of mine introduced me to her Ouija Board. She said it was a tool for contacting the spirits of the dead. I had never heard of such a thing and was eager to try to contact my grandfather through her Ouija Board. We seemed to have success in contacting some kind of spirit, but whatever it was, it wasn’t my loving grandfather
My friend who owned the Ouija Board then decided to hold seances with me and some of our other friends, but nothing much came out of those, except that one girl starting screaming at the top of her lungs during one of the seances, saying that she saw a horrible vision. But no one else could see whatever it was that had her so terrified.
Around that time another school friend told me he had heard about the seances I was involved in, and he loaned me a book which he said gave excellent instructions on how to contact the dead. I don’t remember the name of that book, but it should have been entitled “Spiritism for Dummies,” or better yet: “How To Become A Schizophrenic in 5 Easy Steps!”
That book gave point by point instructions for things like “autonomic” (spirit) handwriting, and also on how to become a medium, so that spirits could use your body and your mouth to speak through. Good grief, what was I thinking when I went ahead and followed those instructions? I really must not have been very bright, when I was 14.
So, naive me, I carefully followed the book’s instructions and put myself into a trance, then I called forth the spirits, and – lo and behold – suddenly my hand was writing words all by itself, and the next thing I knew, I had a head full of loud voices that would not shut up even for a second. My only escape from the nonstop circus in my head, happened when I was asleep. During my waking hours, every moment was a real-life NIGHTMARE.
I begged the voices to PLEASE go away, go back to where they had come from. But they just laughed, cursed, and mocked me. Sometimes they told me to kill myself if I didn’t like my life anymore. They even told me to pray to Satan, since praying to God didn’t seem to help. Truly, I was in a living hell!
In desperation I went to my mother and told her about the Ouija Board, the seances, the How-to-be-a-Medium book, my “success” with autonomic spirit handwriting, and the visions and the voices that would not leave me alone. I desperately wanted help to get rid of those maddening voices, because I couldn’t even go to the bathroom without a crowd watching, mocking, and commenting! I couldn’t have a private thought without a multitude listening to it, and commenting and mocking me for the silly 14-year-old things I thought about! I asked my mother if she knew what I could do to make the horrible spirits go away?
My mother responded by making ME go away. Although I had never tried nor threatened to harm anyone, myself included, she immediately put me into a mental institution. The year was 1967, during that era when the answer to mental illness was to drug you up, lock you up, and throw away the key. My mother assured me that I would only be in the institution for a few weeks, until they made me well. But right after taking me there, as I later learned, she went home and took every item I owned to the town dump. I was never supposed to come out of the insane asylum, you see, because the schizophrenia I had been diagnosed with was “incurable.”
One of the other young teenagers involved in our seances, also ended up hearing voices, seeing visions, diagnosed schizophrenic, and committed to the same insane asylum. He had been trying to contact his mother, who died when he was six.
After nearly 2 years in the asylum, a social worker who saw me periodically because of my young age, asked me why I was there, when I always “seemed” so normal? (I was asked that question a lot, because I was not one of those who went around behaving oddly. I never talked aloud to my voices; I had no need to, since they could hear my thoughts, anyway.)
I told the social worker that I heard voices, and she asked me how the voices had gotten started. So I told her all about the Ouija Board, the seances, and the book on spiritism that had taught me step-by-step how to put myself into an hypnotic trance and contact the dead.
Then this brilliant social worker said, “Well, it seems to me that all you did was hypnotize yourself into hearing voices! You’ve seen hypnotists on TV, haven’t you? How they can hypnotize a person into believing something ridiculous, such as that they are a dog, and the next thing you know that person is barking and behaving like a dog? Then the hypnotist gives them the suggestion that they are no longer a dog, that they are themselves again, and they instantly revert to their normal human behavior. Why don’t you try hypnotizing yourself once more, and while you are under hypnosis, tell yourself that the voices are not real, and that when you wake up, you will not hear those voices, ever again.”
I went back to the ward, got into my bed, and did what she said. I highly doubted it would work, because the voices seemed as real to me as anything – how could I make myself believe via hypnosis that they were not real, when I “knew” better? But, I went ahead and tried the self-hypnosis-reverse-suggestion like my social worker had advised me to do, and…. IT WORKED! When I woke myself out of my self-hypnotic trance, the voices were GONE! There were only a few, very distant, occasional “echoes” of “little voices” now and then, for a brief period of time, but they were so quiet and intermittent that they were very easy for me to ignore, and soon even that stopped.
In this manner I have been free of voices, 99% of the time, since 1969 when I was 16 years old. I have also not taken any anti-psychotic medication since that time. The only exception to my not hearing voices is, like I said at the beginning of this long-winded post, when someone close to me dies. But in every case, I handle it by telling them to please leave me alone, with a brief explanation of why I need for them to leave me, and most do so immediately. Those that do not comply with my request, quickly go away after I pray to the Lord for help, and then I tell the voices to “get behind me,” and after that I ignore them until they get bored enough, I suppose, to go bother someone else. 😉
Today, my residual “mental problems” have to do with my chronic PTSD, general anxiety, and an occasional dark depression. I am in therapy for those things, and I also take a low dose of an antidepressant and an anti-anxiety medication. But I have no schizophrenia, and no psychosis of any kind, not in over 40 years, YAY!
I shared my story here in the hopes that it may help you in some way. You are someone I feel very privileged to call a friend, and I feel sad when you are having a rough time.
“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~
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A book of essays, as published on Medscape.com
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“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~