Am I opinionated or what? But someone has to SAY these things!!! Peace!
Am I opinionated or what? But someone has to SAY these things!!! Peace!
I did this chair tonight with drawing Vine charcoal I made in the grill. I peeled wild grape vine then roasted the pieces in wired-together tin box pierced with a nail to let out the gases, for an hour..Inside after that was nice black vine charcoal!
The Second piece is my drawing in progress of which I will try to post a few stages..I have not come anywhere near to finishing it! Nor do Have any idea what it will look like when done!
Hi everyone, i hope you will enjoy hearing this show, despite the fact that it was recorded several years ago. I plan to update you all on my progress since then and about M–V— in Brattleboro, where i live now. But it may take some time to get that organized and myself in gear. So in the meantime, i found this older radio broadcast that most of you likely have never heard, being out of the NYC area at that time.
For myself, it has been nice to hear my twin sister’s voice and her sounding so very kind and sweet to me. I have not felt that from her or about her in such a long time…and i dunno whether it is me and just a perception, or a real thing. But i wish i had her back in my life in some way that could work for both of us without either jealousy or anything that threatened either of us. (I mean jealousy on her part, not on mine…)
Anyhow, i hope to write a longer and more uptodate post soon, but thank you all for sticking out my long absence and waiting for my return.
Ps this table below was made from cardboard and fabric and paper and glue….largely because we have only beds in our rooms and i needed somewhere to store some of my things. So the table hides a small storage compartment under its removable top.
NOTE: THIS may be Dr Michael E Balkunas’s forgotten relative, also apparently an MD or he plays one on TV, I dunno! All I know is that the men look amazingly alike! They could be cousins like the twins on that Patty Duke show many many eons ago…What is important to remember is that they DO share a certain number of aberrant genes, and I believe that one of theirs leads to sadism…
(Note that My GOOGLE Review (edited) follows)
In May 2014, Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, angered by my rejection of him because I could not speak (he refused me the use of any writing materials) decided to diagnose me with Borderline Personality Disorder despite having asked for in-put from my family and my outside psychiatrists who all stated that no such BPD or any PD symptoms ever existed. He did this despite my having been admitted with a decades-long Axis 1 diagnosis of paranoid schizophrenia (and with PTSD since 2009 due to hospital brutality and abuses).
I believe he added the PD diagnosis in order to justify the implementation of an inhumane Behavioral Treatment Plan which resulted in four-point mechanical restraints and the use of a horrific and freezing seclusion cell. As my Advance Directive stated clearly, even at the time, none of these modes of “treatment” in the past ever led to anything but disaster.
At HOCC I was repeatedly secluded and even restrained, naked in a spread-eagle position, in 4-point leather cuffs for many hours, yet never was this because of any behavior indicating “imminent danger of causing serious bodily harm to self or others” as the Centers for Medicare and Medicaid require. They did this to me always and only because I was too loud, or because I disrupted the unit “milieu.”
Before I was double-locked into one of W-1’s soundproof isolation cells, the nurses might have the male security guards strip me naked “for safety’s sake.” No matter how compliant I was, they always injected me with three “punishment drugs.” Even when I said I would take them orally or offered my arm, they could choose to push me onto my face on a bare mattress, forcibly hold me down until I couldn’t breathe, and administered them in my buttocks.
I informed the guards about CMS rules regarding appropriate uses of seclusion. To their credit they seemed taken aback, but in the end they were always willing to follow orders and to inflict pain in order to ensure my rapid compliance.
Dr. Balkunas insisted again and again on the diagnosis of BPD yet he never treated me with any modality but antipsychotic drugs and never wrote about my exhibiting any BPD symptoms in his notes. In fact his whole stated rationale for starting commitment procedures to the Connecticut Valley State Hospital was that “antipsychotic drugs take time to work.”
The staff of Nurses and Mental Health Technicians at New Britain General Hospital W-1 and most certainly Dr. Michael Edward Balkunas, Adult Psychiatry Unit Chief, must to be re-educated about the evils of employing punishment or torture in mental health care. They should be given, in addition, many hours of intensive in-service training on trauma-informed treatment. But frankly, as a penalty for the extraordinary and sadistic abuses they long inflicted (knowingly with impunity) upon the mentally ill taken into their care, they deserve nothing less than to summarily lose their jobs and their licenses to practice — for good.
I would put my entire New Britain General Hospital chart online except that i only have access at this time to a small portion of my MAY–JUNE 2014 record as they decided that 1000 pages was too many to send to my psychiatrist the first time around. She requested the entire chart, but lazily they sent the discharge summary and the ED chart. In the meantime we have put in an immediate request for the rest and they said they are sending those ASAP.
Interestingly, the first page of the ED report states that availability of Advance Directive is “unknown.” Nevertheless, the ED triage notes state, with apparent disapproval and resentment, that “pt presents with details instructions [sic] on how to provide her care..” ie the advance directive (which it seems was immediately disregarded as an insult to their knowledge)…
ED Nurses note by “Seneilya… RN Assumed care of patient. Patient arrived via EMS after VNA called for increased anxiety. EMS reports patient refused to speak but wrote down, “Sunglasses block hate. I don’t want to hurt anybody.” On admissions patient refused to speak to this RN. Patient pointed at her head when asked why she was here. Patient nodded “yes” when asked if she was hearing voices but refused to answer other questions. …(next sentence indecipherable)
Report given to Beth RN who assumed care of patient…
At 15:19 Beth RN wrote the following:
“Pt not responding verbally to this nurse, this nurse looked through her art book and placed it back on her stretcher then pt picked it up and slammed it down on the stretcher and pointed her finger at the book. Unable to get pt to communicate. Pt pulled sheets over her head. Pt still in street clothes, will pt [sic] as is until examined by MD.”
What is not said here is that this nurse, “Beth” never asked me whether she might look at my artbook. She simply took it as her right to look at it, and then did so. She refused to allow me any means of communication, however, but demanded that I speak to her. When I was unable to do this, she did not inquire in any fashion as to why I was not speaking nor apparently make any inquiries from anyone else as to why this was so. If she had provided me with means to write I might have been able to tell her what had happened in the previous two weeks at home. Instead, she was so furious at my lack of speech that she belligerently refused to permit any other mode of communication but made assumptions that were extremely detrimental.
I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so.
This is what Beth RN records what happened after I was provided with a meal that I could not eat because it was not vegetarian. Note that before this, I had begged gesturally for a means to communicate and all such implements had been outright refused me. This had led to my slamming the artbook on the stretcher in frustration and pulling the sheets over my eyes, effectively silenced.
Now with my meal, I at last had a means to write.
“Pt ate nothing,” Beth RN reports, “[but she] wrote messages with ketchup and French fries, ‘I need a crayon.” This nurse told pt she needs to speak because she can, pt threw everything on her table on the floor, food juice, etc. Pt then picked up fries from the floor and started eating them and gathered more and putting them in the bed with her and kicked the other food away in the OBS area.”
“Pt went to the BR, seen coming from the BR with paper towels then pt observed writing with her finger on a paper towel with something, first thinking it must be ketchup, then maybe jelly, then this nurse go up to check and pt found to be writing with her own feces, some paper was able to be removed, other paper with large piece of BM pt through at this nurse. Pt moved to room 42 [seclusion] then pt got OOB and snuck around corner and tried to attack this nurse from behind, public safety was able to get to pt first, pt to be medicated and restrained. Pt licking feces off fingers, would not let nurse wash her hands…”
Now I want to tell my side of this story because they invented this story out of whole cloth. Yes, parts of it are true, but out of order and not the way Beth related it. This is important because the way she wrote it makes me seem like I spontaneously attacked her out of the blue, which never happened. However, I was also privy to a conversation by the so called Public Safety officers, AKA Guards, who in front of me decided to create this story in order to justify restraining me, because they simply wanted an excuse.
What really happened was that due to my needing to communicate, I wrote my needs with ketchup on the paper box the meal came in, but that was taken away from me, and Beth, rather than telling/asking me to speak came up to me with a NOTE she had written to me (the irony of this is beyond belief except that it is true!) saying, “I will not speak to you or give you anything to write with until you start speaking to me…” Oh GOD! It was incredible. At this point, I was livid and also desperate to write so I had no choice but to use my own feces, which didn’t strike me as awful as it might have…What other choices did I have???? None at all.
So I did as she wrote and I tried to write journal entries about what was happening to me on paper towels with my own fecal material. This of course did not go over too well. However, I never snuck up behind Beth and tried to assault her. What happened was what I wrote in the second rap song. She snuck up on me and simply SNATCHED my artwork book out from under me and raced away with it, holding it up in triumph. I was so furious, without even a thought as to any possible consequences, that I raced behind her intending only to snatch it back. That was all. I never assaulted her, I never so much as touched her. I only grabbed for the book that she had not asked for from me. PERIOD.
That was when they dragged me to “Room 42” and when the guards, holding me down, decided they wanted an excuse to restrain me, and though one of them cautioned that they really had no reason to do so, the other told him not to worry, “we’ll find a reason.” And as I learned shortly thereafter from accusations made by Dr Balkunas, they did so.
But an accusation made isn’t necessarily true, as we all know, and just because Dr Balkunas accused me of LYING or of making up a story doesn’t mean that was true either. He never asked me what did happen. He never tried to find out the real events of that evening, he simply designated me as manipulative and “volitional” essentially a prime-time liar…Which meant that this started a snowball of a disaster in the making. Because by the time he finally saw me on the W-1 Psych Unit the next day, he had already made the decision not to let me communicate by writing and therefore he meant not to let me tell him what was going on from the first. He had decided not to recognize the extreme state of desperation and frustration this induced, but to see only violence and willfulness and to deal with this by punishing me with torture. PERIOD.
But I am getting ahead of myself. Michael E Balkunas, MD , the self- proclaimed god of W-1, claimed to have been there when this happened, when the guards said that I just shot up off the gurney and attacked Beth, the nurse, from behind. But the record does not bear this out. In fact, he never saw me at all until the next day and all the orders were written by other physicians. Dr Balkunas’s name is not even mentioned until the afternoon of May 13 when it says only that he was at my bedside to evaluate me. Even then, from what I recall, I was so sedated after multiple forced meds that I was unable to answer any question. I was unable to speak in any event, so given the face that he refused me the tools to write with, this was as unproductive an evaluation as possible.
I was to be admitted to W-1 on the basis of his snap judgments from that evaluation,: from which he drew the diagnosis that I had a probable “borderline personality disorder.”
How could he possibly diagnose a personality disorder, something that takes time to discern in a person, after seeing me after such an extremely traumatic circumstance, for less than three minutes? In point of fact, what likely happened was that he took an immediate disliking to me, and decided to diagnose me with something that in his mind justified his egregious treatment of me as well as his immediately not allowing me to write instead of speaking. I cannot otherwise explain his behavior . Nor can I understand his apparent surprise at mine when I did not respond to him as he expected. Why did he think I would respond positively when he refused to speak to me unless I was verbal? Why did he think that coercion would bring about a positive reaction? Did he truly think this would be helpful and restorative? I doubt it. I think he just didn’t like me and so he opted as most men do to abuse and punishe me out of rage. Because he was fed up, he lost his temper with me from the get-go…
I recall thinking about the rage in his voice and how out of control he sounded as he sent me to “Seclusion! Seclusion! “ He actually screamed this directive to the guards as they deliberately grabbed my torn rotator cuff which they had been told about in the emergency room (so they would use it to their advantage) propelling me headlong down the hallway. “Restraints! Restraints!” he shouted in a shrill and angry voice.This was retributive and nothing else. He was furious and I was going to learn not to fuck with Michael Edward Balkunas, head of the W-I general psychiatry unit in the Hospital of Central Connecticut in New Britain or he would know the reason why!
But don’t let me put words in Dr. Michael Edward Balkunas’s mouth. Here is what he wrote, in his words. He wrote, surprise, surprise that “while in seclusion I would often scream” . Yet he states with apparent resentment that I had brought items with me “such as a large advanced directive” The nursing notes repeat this as if this is an evil thing, and proceed to disregard every item on it with relish. Not only that but Balkunas from the first accuses me of behaving with “volition” although he does not actually adduce any facts or observations to back up this thinking, except that I brought with me the large advance directive and a published book of the art work I had done.
This artbook, by the way, was was kept from me the entire time I was on the unit on the pretext that it would be very harmful for the other patients if they were to see it.I was led to believe that the mere glimpse of my artwork would hurt them. This was emphasized to me so many times that I felt guilty not only for having brought it with me, but for having drawn the pictures at all. The RNs seemed to enjoy my feeling so bad about it….
Balkunas further claims that he “asked if I would like to speak to him, PLEASE” but what he fails to note is that he refused to permit me any mode of communication other than verbally and that he peremptorily walked out on me when I could not utter a word. He notes that, Yes, I did throw my bed-clothes at him, but does not mention that he would not even look at my gestures in response.. Instead, he stood up in disgust and turned on his heels and strode out.
I admit that having already been so abused in the ED I was hideously upset at being unable to make him stay, unable even to make him HEAR me, that I did the only thing I could do to MAKE ANY NOISE at all, WHICH WAS TO THROW THINGS…
Both my brother and my psychiatrist claim that they told him pointblank not to draw baseless and dangerous conclusions from my traumatized behavior, that he would be making a mistake and would injure me badly if he did so. But he was of course the superman that all in-hospital psychiatrists are, the MR RIGHT that can finally fuck* you and get it right. SO he took one look at me and said, THAT IS OBVIOUSLY A CASE OF BPD if ever I saw one… Of course! And NATURALLY Michael E Balkunas is MR RIGHT, The one who fucks* you and you finally thank him for it, OF COURSE!
So THANK YOU Michael E Balkunas, You FUCKED* me OVER royally and you must have enjoyed it, because you fucked* me up the ass too. And I had to thank you in the end, didn’t I? Thanking you for fucking* me was the only I could earn my way to discharge, You forced* me to bend over and beg you to fuck* me up the ass and then Thank you again for abusing me just like any asshole who abuses women. You murdered* me, and halfway through slicing* my throat you made me beg you to fuck* me, and I did because it was the only hope I had that you might let me off with my life…Finally, with my throat half sliced* and my asshole fucked* wide open, you said, OKAY, now you can leave, you are free, you can go home now. I have had my way with you so go away…
So THANK YOU FOR FUCKING* WITH ME MICHAEL EDWARD BALKUNAS MD, GOD, THANK YOU FOR LETTING ME GO….I owe you my life, because you let me go and you didn’t in fact murder my body, I am still alive, though barely, you only tortured me and you only fucked* me and murdered my soul. You killed my spirit but you did leave my body somewhat intact so I could walk out of there and for that I had to pretend to be grateful and to thank you every day for a week, so I mouthed the words, Thank you Michael Balkunas for fucking* me and letting me leave stll alive….
But I wish you had killed me dead. Instead, you manipulated me into thanking you, for fucking* me over. You didn’t kill me quite. You made me thank you and thank you and thank you…and so now what do I do, you asshole- fucker*, but live with the torture you inflicted and wish you would crawl into your early grave somewhere and explode into a ball of maggotry.
*metaphorically, of course, but in a very real way nonetheless…So I feel it every day and wish I were dead! Note that in every other instance where an * is missing I usually mean my words literally and without any sense of metaphor whatsoever.
NOTE that this is the link to my GOOGLE + review that I posted shortly after my stay at New Britain General Hospital..I think I was rather measured in my appraisal, after all was said and done.
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.
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…
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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:
Superintendent The Saskatchewan Hospital, Weyburn
SECLUSION ROOMS, found in most psychiatric hospitals, too often look as if they were intended as temporary quarters for wild animals, or perhaps as storerooms for dangerous chemicals, rather than as shelters for sick and distressed humans.
Yet, the purpose of seclusion is clear and admirable. It is intended to reduce interaction following a rupture in interpersonal relationships between the patient who is being secluded and other patients, or members of the hospital staff.
Seclusion usually occurs when there has been acting out or a threat of it. While skilled psychiatric nurses can often handle such situations without using seclusion, it is proper that a patient, in an explosive situation, should have an opportunity to withdraw to a suitable spot to be alone for a time or in the company of someone he trusts.
When children quarrel with siblings or parents, they are often sent or asked to go to their room and be alone with toys and playthings. Adults retire to a bedroom, a study or even to the toilet. Although it was once common practice, it is no longer thought admirable to lock a child in a dark cupboard. In his own room, he gets comfort from his toys, just as an adult will soothe himself with a book, a pet animal, possibly with music, or just by being alone.
The mentally ill person, who has had a rupture of interpersonal relationships, likewise needs space under his own control where he can “pick up the bits.” The best place would be a room of his own, with familiar furnishings and his personal possessions easily visible. Wherever his retreat, it should give external stimulation as well as support and comfort.
Bare, Drab Rooms Affect Perception
Seclusion rooms in many hospitals are built to some stereotyped plan, and are poorly-lit, bare, drab rooms of a curious cube-like construction which makes them seem unduly high. There is little or no furniture, often only a mattress. Walls are usually tiled in one color only, and this sometimes white. Windows covered with heavy screening, ceiling lighting often high and remote beyond the patient’s control, heavy imprisoning doors sometimes the same color as the walls, and in the middle of the floor a brass grating over a drain hole―no wonder these rooms are suggestive and frightening. Such rooms strongly resemble the reduced environment described by Hebb* in which even well people can experience major 18 changes in thinking,. perception and mood, larked in certain non-experimental situations, notably brain washing, such environments are deliberately used. to. encourage alterations in perception. Surely then it is un-wise to place psychotic people in a situation which, since it will not afford them even minimal external stimulation, is likely to increase the perceptual disorder which many of them already have.
The need for sufficient stimulation, particularly of a visuo-auditory type, combined with carefully selected tactile and olfactory stimulation, is strongly suggested by Goldfarb’s recent work at the Ittleson Family Center with children. His work indicates that many schizophrenic children tend to inhabit a tactile-olfactory world, rather than the more common and culturally acceptable visuo-auditory one. It seems probable that schizophrenic adults may be in much the same position.
Clearly then we must provide our disturbed patient with an adequate amount of pleasurable visuo-auditory experience while in seclusion, and also let his environment be rich in socially acceptable tactile-olfactory pleasures, lest he seek the only remaining gratification―tactile-olfactory ones from his own body. Specifically, let us imagine a patient, greatly disturbed, shut up in a bare room, with bare walls, little or no clothing, and possibly only a mattress or blanket as furnishings. The visuo-auditory and tactile-olfactory enjoyments to be obtained from such surroundings are very small. Is it surprising, therefore, if his seclusion results in apsophilic (auto-erotic) activity, in the tactile experience of staff members or even in reviving a tactile and olfactory interest in his own body products of urine and feces?
These apsophilic activities, the touching and snuffling on the nursing staff, and the handling of feces and urine are likely to produce great anxiety and great resentment in those who must care for the patient. He will naturally interpret this as dislike and rejection, and a vicious circle is established. He is driven deeper and deeper into his tactile-olfactory experiences, and probably also into full hallucinatory experience. Since we are woefully short of really sophisticated staff, we must make .very vigorous efforts to see that this type of “reduced environment” seclusion is banished from the mental hospital as quickly as possible.
The seclusion room, therefore, must be not merely pleasant, but the very best room on any ward. There are several reasons for this. For one thing, if the room is pleasant, it will take away the idea of punishment―not merely by a verbal gesture, but by a change in the attitude of everyone on the ward, patients and nurses, who will both be far more impressed by the fact that the seclusion room is the best on the ward than if there is simply lip service to the effect that seclusion is not punishment. Money invested in making this room conspicuously better than other rooms “because it is for those who are the most unwell” will indicate to both nurses and patients that the hospital particularly concerns itself with those who are the sickest. The fact that the room is an object of pleasure and satisfaction to all the patients on the ward will exert considerable pressure on the disturbed patient to use this joint possession properly. This pressure will be extremely effective in preserving the room from damage.
Dimensions and Decor Important
What, then, should this “best room in the ward” be like? Particular attention must be given to its size and proportions. A small room of great height is extremely oppressive to most people. and if such a room must be used, perhaps a false ceiling should be built in. The lighting must be good, and must, at least in part, be under the patient’s own control. The walls should be pleasantly painted in bright and reassuring colors. There should be pictures on the wall, and a mirror (a metal or unbreakable mirror is permissible). The bed should be comfortable and the bed cover pleasant. Sheets, pillows and mattress must of course be provided. There should be chairs and a desk, the chairs self-colored and if possible, textured. Patterned material is best avoided, since it may have a disturbing, Rorschach-like effect. (Until we know more about the effect of patterns on patients’ perceptions, we should be cautious about patterned materials.) A carpet or rug, preferably nylon, should be on the floor, which may be of tile or linoleum, but should be light in color. To avoid uncertainty about the passage of time, a clock and a calendar should be clearly displayed. If a toilet cannot be readily available, a modern commode chair may substitute, if it is explained to the patient.
It is important here, as elsewhere in the hospital, for the furniture to be light, strong and elegant, rather than heavy or cumbersome. Heavy furniture quickly becomes a challenge to some patients to see if it can be broken. It encourages all patients to lose one of the most important skills which we all acquire in childhood―the ability to maneuver through complicated mazes of furniture. This ability includes all sorts of skills, especially subliminal psychomotor movement. Mental patients frequently lose this ability through disuse, and all too often the arrangements in the mental hospital give them no opportunity to re-acquire it, or what is even more important, to correct early the tendency to lose it. Experimental work shows that, given the opportunity, people frequently correct perceptual errors on their own. But a bare room, fitted with one massive piece of furniture affords neither encouragement nor motive for correcting an error of any sort.
In the seclusion room, the patient should have diversions from the very start. Games, books, perhaps a slide projector, a television or record player under his control are all possibilities. Cut flowers and potted plants should decorate the room. Writing materials should of course be available, and if the patient has difficulty in writing, as some psychotic people do, he might be provided with chinagraph (grease) pencils and an ample supply of paper. Part of the wall might be processed for drawing. which people sometimes find pleasant when they are upset. Plasticine and paint should be provided. A way might also be devised for the patient to brew his own coffee or tea. A tape recorder could be provided to allow the patient to hear his own voice, and get accustomed to the fact that he really is there, though this should be handled with caution, because some people find it rather a disturbing experience.
All these measures must, of course, be combined with friendly interaction with a member of the hospital staff, one with whom the patient feels comfortable and can speak freely, but who, like the room itself, will keep him as close to reality as possible.
In brief, the seclusion room is ideally a place where the patient, after a rupture in interpersonal relation-ships, can re-assert his adultness and recover his poise, rather than a place of punishment where he is treated like an abandoned child in a dark cupboard or a bear in a pit.
(See link to original article for photo of music therapy session.)
*Dr. Donald Hebb, McGill University, conducted experiments in which the subject was placed on a bed in an air-conditioned box with arms and hands restrained with cardboard sleeves and eyes covered completely with translucent ski goggles. Hallucinations and delusions of various sorts developed, mostly in those who could stay longer than two days. Many subjects left at about twenty-four hours
CLick to enlarge
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…
HOLY SHITE AND URINE TEAM
Her cool wordless RN face expresses nothing
as she scoops the ice cream turd and quickly disinfects.
But I think for her, thinking, knowing this:
“Asshole, shithead, you think
your shit don’t stink…” While I have no working sense of smell,
I know I’m an unofficial pain in the ass here
because no one can be officially PIA
on a psychiatric ward, not even I, the wild shit smearer
who knows no disgust first hand
for not smelling it.
What I know well and sadly is
the consequences of disgusting others,
the distancing, the shunning,
how killing the ultimate loneliness is, double-locked away
in a soundproof seclusion cell.
Shackled naked into leather 4-point restraints, I shriek my soul away,
from the bottom of my lungs for 20 minutes straight.
The illegally silenced intercom remains dumb.
Even the 1:1 monitor positioned behind the door.
peering lazily through the judas-eye of a small plexi-port-hole,
doesn’t really pay attention. Why bother, the shit smearer
gets what she deserves.
Oh, I know I disgust them, what with my out of control turd throwing
and my illegible scribbling with my feces on the wall
but they refuse me so much as a marker and board,
and they won’t sit down to listen when I speak.
Mute for 16 days, I will be heard now, one way or another.
But this is no way to think, and i think without thinking, just do with do do, mindlessly, enraged by trauma.
I foul myself because no one cares,
because their disgust is threaded, even so heat-felted with hatred
they have long forgotten I’m just another patient
with problems bigger than the shit I fling.
Instead, cucumber skinned nurses sneer their disgust,
Bad dog! Bad, bad dog!
But I know dog is just God spelled backwards.
And God created the living world
from dust and mud and excrement.
I am no god, I am Live backwards to Evil:
I create chaos from utter chaos within.
There are always turds to form and fling.
And in the end all they can do is kill me.
Fuck me! Do me a favor you turds, kill me!
But first, you have to silence the hate on your faces,
clean the smeared walls,
and pretend I am nothing to you.
When you came in to take me down,
restrain me for any excuse, even for just wanting a blanket.
you had to breath in my shit, that fear,
and knew what it could do to you.
You’d heard the stories, deadly E-coli, C diff.
Something in me might kill you,
I don’t know what scared you more, my wildyelling
or my excrement.
That was always the struggle. Shit stinks. I stank.
You hated me for my smell. You feared me for what I did.
I know your fear. It was: what would happen if you
lost control of yourself.
Would you, control freaks,
too dance naked in dung?
I understand now why Dr. Michael E. Balkunas, the psychiatrist at New Britain General Hospital (Hospital of Central Connecticut) W-1, general psychiatry, gave up on me. He decided, even after eliciting my brother’s opinion both from a professional and a personal standpoint, and Dr Angela’s equally professional opinion that I do not suffer from Borderline Personality Disorder, to diagnosis me secondarily as exhibiting that disorder.
Oh, he knew I had come in with an acute exacerbation of schizophrenia and that I had PTSD. He knew that I had in my electronic medical record documents stating from other psychiatrists that I do not and never did have any personality disorder, despite in-hospital “behaviors.” But I know why Dr Balkunas diagnosed one. He did it for the same reason the other hospitalist psychiatrists have done it in the past: 1) in order to justify the use of a Behavioral “Treatment” Plan that was tantamount to torture and 2) to excuse his liberal use of seclusion and restraints in instances when they went against all CMS regulatory guidelines. And 3) in order to dismiss me and call my behaviors “manipulative and devious” instead of taking me and what I said seriously.
I also suspect, for all the second shift RN Barbara’s telling me that Michael Balkunas MD is a caring man and “never gives up on a patient” that he DID in fact give up on me. In fact I suspect that he never really tried to deal with or treat me at all, that from the first time he resorted to seclusion and restraints, he knew he had opted to terminate any treatment alliance.
But how did I figure this out? Well, it isn’t as if there ever had been any kind of alliance between us. From the first day after he admitted me from the ER, when he came into my room while I was still mute, he just walked away, saying dismissively, “I won’t talk with you unless you speak.” Immediately I understood that this man was willing to jeopardize everything about me and about my treatment in order to assert his power.
The same thing came into play after I began speaking about a week later. Now the issue was that he would not speak to me, would not deal with me at all but would immediately leave the room if I became angry and spoke with anything resembling a raised voice. (Argh, this was so many shades of Amy Taylor MD at the Institute of Living last year! — and Dr Balkunas tortured me in similar ways with predictable ineffectiveness — but powerful people behave in predictable ways, right? It seems I must have threatened their sense of entitlement. Why else take it out on me? Who am I? I’m a big fat nobody! They could have ignored me or just treated and released me, like anyone else. But instead they did their damnedest to crush me and destroy me. Why? Because in the end, I think I must have triggered some underlying feelings of resentment and impotence in these two psychiatrists and you know you do not threaten to unearth the feelings of a psychiatrist, or at least not with Michael Balkunas MD or with Amy Taylor MD …)
I learned very quickly, but not quickly enough, that everything about the Hospital of Central Connecticut W-1 Unit at New Britain was about coercion and control. Not about trauma-informed, patient-centered care. I don’t know how other patients managed to be discharged from there within a few days, but it would never have been possible for me. Mostly because I was simply too out of control to BE controlled by people who used such methods to undermine any possible calm and stability I might have achieved in those early days. They did NOTHING to help me but take away the very coping methods and objects that might have helped me. They used the carrot-and-stick method liberally, but mostly they used sticks. The very fact that the ED staff had seen fit to seclude me, give me IM meds twice and also to four-point restrain me naked to a bed tells you something about the brutality that reigns supreme there.
You know the very first thing I did was give the ER and the W1 staff a Psychiatric Advanced Directive. It was supposed to help them to help me. But instead they seemed to resent my knowing myself, and wanting them to know how to help me. They reacted badly and worked against it in every way possible, instead helping me. It appeared to anger them that I knew myself, and instead of using it, they did everything in their power to abrogate each and every section of it, right up to the section where it asked them to notify my doctor and my brother when and if they used seclusion and/or restraints despite the warnings.
No one ever called anyone in each instance that they chose to restrain or seclude me, even though I begged them to verbally at the time as well, and this document, which was at the front of my chart all along, stated in no uncertain terms that I wanted both people to be notified.
It was the worst hospitalization I have ever had, and I say that having had many serious and difficult stays. I was not just a difficult patient, I was a pain in the ass, but this was a direct result of the trauma I experienced in the ED and immediately following it on the floor. If I had not been traumatized, on the unit and in the ED, I feel certain that my “behavior,” outrageous, “disgusting,” and out of control as it was, would never have been so damaged. But because everyone saw fit to go against everything advised in the PAD, and do everything they could to re-traumatize me– even after I had a conversation with a nurse about my three experiences with date rape, even after that, she decided to seclude me, involving the forcible removal of me from my room by brute guards who bodily threw me into a cell without any mean s of communication with the world — because of this, they got the regression and degeneration and worsening of symptoms that my PAD predicted would happen. What did they expect? That I would simply thank them?!
I realized, though, the Monday morning of the week he discharged me when he came into my room and asked me how I was doing, that Dr Balkunas, who “never gave up on a patient,” had given up on me. Now, my brother had indicated to him that the “kindness” Dr Balkunas was offering to me by means of involuntary commitment to CVH would be devastating and destructive to the max. I think “Balkie” had had to think about the wisdom of actually sending me there. So he also had to think about whether he actually had any tools at all to “fix me” or cure me as he had promised. Indeed he was no miracle worker and had never held out anything, NOTHING AT ALL, by way or therapy or treatment modalities beside commitment to the state hospital to help me…so without that threat he had nothing to offer me.
The man never once sat down and even talked to me calmly and caringly. I say this because when he sallied forth with his usual opening that Monday morning, How are you? (I had decided finally, with my brother’s encouragement to “play the game.”) I answered with the socially acceptable, “fake” answer, my game plan, not expecting any real psychiatrist worth his salt to accept it, but trying to “play the game” anyway, as I was desperate to be discharged. My answer?
“I’m fine, thank you. How are you?”
Balkunas really didn’t bat an eyelash, the completely social answer was good enough for him, because he had given up trying to help me. Indeed, he had never even tried. So he proceeded, “How are you eating?”
“How are you sleeping?”
“Well, if things continue this way and there are no meltdowns I think you can go home on Friday.”
There were indeed meltdowns, even the night before I was discharged I had a meltdown over my supper tray. But Dr B was not on the floor much and didn’t hear of those, and everyone was so sick of me that they didn’t write them up, knowing I was to go home. And I persisted in answering those three magic questions “correctly.” Socially, as I had been taught, against my will, years ago. He never asked me a single other thing, and never talked about anything else at all after that.
The day of discharge came, and the great and caring Dr. Michael Balkunas popped his head into the room. “How are you?”
“I’m fine thank you. How are you?”
“Okay, I will write your discharge papers now.”
The very minute he said that and turned to leave, I put my sunglasses back on, as I saw that taking them off a week prior had served its purpose and it mattered not whether I wore them from that point on or not. I still wear them today, to protect people from my evil…
Dr. Michael Balkunas may talk a great game about helping people but he has very few tools to do so and really it is all pretence. He has medications, which are by and large bogus (though he has been educated by Big Pharma for so long he fails to understand this), and he had commitment proceedings to the state hospital, unless he happens upon a millionaire family willing to spend on their family member. I was not one of those, nor worth it. CVH – for those who are not in the know, CVH—Connecticut Valley Hospital is the last state hospital and the only long term facility for adults on Medicaid in Connecticut – being sent there would have killed me and he and my brother both knew it.
The difference was that my bother was decent enough to care while Balkunas honestly thought it would be good for me to lose my life there. And that was his treatment? Bullshit. He was a bad doctor and despite the cant, he gave up on me to boot. Well, thank god he did.
But you know, I do not forgive his accepting my social “I am fine thank you. How are you” so easily. That was insulting. He was sick of me, and considered me willfully manipulative and devious, otherwise he would not have diagnosed me with the damning BPD diagnosis, which in his hospital means just that you are a PIA, no less and no more. But he might have at least pretended to be a psychiatrist and not just a social buddy. How are you? Fine thank you, How are you? What sort of answer is that? ON the other hand, if he had asked me, what could I have said? We both know I had to get out of there and there was nowhere to go but home. He was not interested in finding out how I was, in talking to me. Not from the first. All he wanted was to medicate me. Which he did. So fuck me. How are you, I am fine thank you how are you? And it wouldn’t have made a rat’s ass worth of difference if I had not been okay, which I wasn’t, so long as I said I was fine, thank you, how are you’
Like I said, it was a game. That was the name of it, Play the Game…
So fuck Michael Balkunas. He is worthless to me, and his add-on personality disorder diagnosis means less than a fig to me. He knew I had schizophrenia and PTSD. He knew the hospital was abusing me. He knows nothing about me, never spent more than 3 minutes with me on any given day. He knows nothing. And I don’t give a flying femtogram about HOCC (the former New Britain General Hospital) except insofar as they ought to ask me back to educate them and improve the situation vis a vis their abusive use of seclusion and restraints, not trauma-informed patient-centered care at all. However since even supposedly trained Nurse Manager Jessica came around to not objecting, and approving their use, I can see that it might be hopeless to do so. Willing though I would be.
Barbara, RN on the second shift. You alone were a lifesaver and a light in a dark tunnel. I wrote in the scraps of paper I called a journal of your kindnesses again and again, and I forgive your being blind to the cruelty of seclusion and restraints, because you have lived with that culture too long, You just need to be re-educated. But you saved my life. Had you not been on duty that weekend before I was discharged, I might not have calmed enough to say to Dr. Balkunas the socially acceptable “I-am-fine-thank-you-how-are- you” mantra that was the magic ticket out of there.
I know no one on W-1 remembers me with anything but relief that I am gone and a great deal of disgust and anger. Ditto for me. I still wake screaming from nightmares about the place and a great deal of anger that I don’t want to let go of. I want to hold onto it long enough to fix the situation of W1, before I forgive anyone. Then we will see.
But for now I am off to Vermont for six weeks to stay with relatives. I hope to heal. I hope I can heal…
Take care of yourself Barbara. You would do well to find a kinder and better place to work and train. I thank YOU for everything. I mean it when I say you saved my life and sanity.
Blessings on you alone, Barbara, the rest of you can FYandGTH.
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 THOUGHT THIS WAS INCREDIBLY WELL WRITTEN AND IMPORTANT INFORMATION. SEE CREDITS AT THE BOTTOM. Posted on January 12, 2014 by annecwoodlen THINGS YOUR DOCTOR SHOULD TELL YOU ABOUT ANTIDEPRESSANTS September 12, 2012 By Paul W. Andrews, Lyndsey Gott & J. Anderson Thomson, Jr. Antidepressant medication is the most commonly prescribed treatment for people with depression. They are also commonly prescribed for other conditions, including bipolar depression, post-traumatic stress disorder, obsessive-compulsive disorder, chronic pain syndromes, substance abuse and anxiety and eating disorders. According to a 2011 report released by the US Centers for Disease Control and Prevention, about one out of every ten people (11%) over the age of 12 in the US is on antidepressant medications. Between 2005 and 2008, antidepressants were the third most common type of prescription drug taken by people of all ages, and they were the most frequently used medication by people between the ages of 18 and 44. In other words, millions of people are prescribed antidepressants and are affected by them each year. The conventional wisdom is that antidepressant medications are effective and safe. However, the scientific literature shows that the conventional wisdom is flawed. While all prescription medications have side effects, antidepressant medications appear to do more harm than good as treatments for depression. We reviewed this evidence in a recent article published in the journal Frontiers in Psychology (freely available here). The widespread use of antidepressants is a serious public health problem, and it raises a number of ethical and legal issues for prescribers (physicians, nurse practitioners). Here, we summarize some of the most important points that prescribers should ethically tell their patients before they prescribe antidepressant medications. We also discuss the ways that prescribers could be held legally liable for prescribing antidepressants. Finally, we implore practitioners to update the informed consent procedure for antidepressant medication to reflect current research and exercise greater caution in the prescription of antidepressants.
Most antidepressants are designed to alter mechanisms regulating serotonin, an evolutionarily ancient biochemical found throughout the brain and the rest of the body. In the brain, serotonin acts as a neurotransmitter—a chemical that controls the firing of neurons (brain cells that regulate how we think, feel, and behave). However, serotonin evolved to regulate many other important processes, including neuronal growth and death, digestion, muscle movement, development, blood clotting, and reproductive function. Antidepressants are most commonly taken orally in pill form. After they enter the bloodstream, they travel throughout the body. Most antidepressants, such as the selective serotonin reuptake inhibitors (SSRIs), are intended to bind to a molecule in the brain called the serotonin transporter that regulates levels of serotonin. When they bind to the transporter, they prevent neurons from reabsorbing serotonin, which causes a buildup of serotonin outside of neurons. In other words, antidepressants alter the balance of serotonin in the brain, increasing the concentration outside of neurons. With long-term antidepressant use, the brain pushes back against these drugs and eventually restores the balance of serotonin outside of the neuron with a number of compensatory changes. It is important to realize that the serotonin transporter is not only found in the brain—it is also found at all the major sites in the body where serotonin is produced and transported, including the gut and blood cells called platelets. Since antidepressants travel throughout the body and bind to the serotonin transporter wherever it is found, they can interfere with the important, diverse processes regulated by serotonin throughout the body. While physicians and their patients are typically only interested in the effects of antidepressants on mood, the harmful effects on other processes in the body (digestion, sexual function, abnormal bleeding, etc.) are perfectly expectable when you consider how these drugs work.
Many people who have suffered from depression report a substantial symptom-reducing benefit while taking antidepressants. The problem is that symptoms are also substantially reduced when people are given a placebo—a sugar pill that lacks the chemical properties of antidepressant medications. In fact, most of the improvement that takes place during antidepressant treatment (approximately 80%) also takes place with a placebo. Of course, antidepressants are slightly more effective than placebo in reducing symptoms, but this difference is relatively small, which is what we mean when we say that antidepressants have a “modest” ability to reduce depressive symptoms. The pushback of the brain increases over months of antidepressant treatment, and depressive symptoms commonly return (frequently resulting in full blown relapse). Often this compels practitioners to increase the dose or switch the patient to a more powerful drug. Prescribers fail to appreciate that the return of symptoms often occurs because the brain is pushing back against the effect of antidepressants. 3. The risk of relapse is increased after antidepressant medication has been discontinued Another effect of the brain pushing back against antidepressants is that the pushback can cause a relapse when you stop taking the drug. This pushback effect is analogous to the action of a spring. Imagine a spring with one end attached to a wall. An antidepressant suppresses the symptoms of depression in a way that is similar to compressing the spring with your hand. When you stop taking the drug (like taking your hand off the spring from its compressed position), there is a surge in the symptoms of depression (like the overshoot of the spring before it returns to its resting position). The three month risk of relapse for people who took a placebo is about 21%. But the three month risk of relapse after you stop taking an SSRI is 43%—twice the risk. For stronger antidepressants, the three month risk is even higher.
Antidepressants can kill neurons (see our article for a review). Many medical practitioners will be surprised by this fact because it is widely believed in the medical community that antidepressants promote the growth of new neurons. However, this belief is based on flawed evidence—a point that we address in detail in our article. One way antidepressants could kill neurons is by causing structural damage of the sort often found in Parkinson’s disease. This neurological damage might explain why some people taking antidepressant medication can develop Parkinsonian symptoms and tardive dyskinesia, which is characterized by involuntary and repetitive body movements. Many prescribers mistakenly think these syndromes only occur in patients taking antipsychotic medications.
Recent research indicates that antidepressants may increase the risk of cancer outside of the brain, such as breast cancer. However, the neuron-killing properties of antidepressants may make them potentially useful as treatments for brain cancers, and current research is testing this possibility.
Since neurons are required for proper brain functioning, the neuron-killing effects of antidepressants can be expected to have negative effects on cognition. In rodents, experiments have found that prolonged antidepressant use impairs the ability to learn a variety of tasks. Similar problems may exist in humans. Numerous studies have found that antidepressants impair driving performance, and they may increase the risk of car accidents. Recent research on older women also indicates that prolonged antidepressant use is associated with a 70% increase in the risk of mild cognitive impairment and an increase in the risk of probable dementia. 7.Antidepressants are associated with impaired gastrointestinal functioning The action of antidepressants results in elevated levels of serotonin in the intestinal lining, which is associated with irritable bowel syndrome. Indeed, antidepressants have been found to cause the same symptoms as irritable bowel syndrome—pain, diarrhea, constipation, indigestion, bloating and headache. In a recent study, 14-23% of people taking antidepressants suffered these side effects. 8. Antidepressants cause sexual dysfunction and have adverse effects on sperm quality. Depression commonly causes problems in sexual functioning. However, many antidepressants make the problem worse, impairing sexual desire, arousal, and orgasm. The most widely studied and commonly prescribed antidepressants—Celexa, Effexor, Paxil, Prozac, and Zoloft—have been found to increase the risk of sexual dysfunction by six times or more. Evidence from case studies suggests that antidepressants may also interfere with attachment and romantic love. Some antidepressants have been found to negatively impact sperm structure, volume, and mobility. 9. Antidepressant use is associated with developmental problems Antidepressant medication is frequently prescribed to pregnant and lactating mothers. Since SSRIs can pass through the placental barrier and maternal milk, they can affect fetal and neonatal development. Generally, if SSRIs are taken during pregnancy, there is an increased risk of preterm delivery and low birth weight. Exposure during the first trimester can increase the risk of congenital defects and developing an autism spectrum disorder, such as Asperger’s Syndrome. Third trimester SSRI exposure is associated with an increased risk of persistent pulmonary hypertension in the newborn (10% mortality rate) and medication withdrawal symptoms such as crying, irritability, and convulsions. Prenatal exposure to SSRIs is also associated with an increased risk of respiratory distress, which is the leading cause of death of premature infants. 11\\10. Antidepressant use is associated with an increased risk of abnormal bleeding and stroke Serotonin is crucial to platelet function and promotes blood clotting, which is important when one has a bleeding injury. Patients taking SSRIs and other antidepressants are more likely to have abnormal bleeding problems (for a review see our article). They are more likely to have a hemorrhagic stroke (caused by a ruptured blood vessel in the brain) and be hospitalized for an upper gastrointestinal bleed. The bleeding risks are likely to increase when SSRIs are taken with other medications that reduce clotting, such as aspirin, ibuprofen, or Coumadin . 11. Antidepressants are associated with an increased risk of death in older people. Depression itself is associated with an increased risk of death in older people—primarily due to cardiovascular problems. However, antidepressants make the problem worse. Five recent studies have shown that antidepressant use is associated with an increased risk of death in older people (50 years and older), over and above the risk associated with depression. Four of the studies were published in reputable medical journals—The British Journal of Psychiatry, Archives of Internal Medicine, Plos One, and the British Medical Journal—by different research groups. The fifth study was presented this year at the American Thoracic Society conference in San Francisco. In these studies, the estimated risk of death was substantial. For instance, in the Women’s Health Initiative study, antidepressant drugs were estimated to cause about five deaths out of a 1000 people over a year’s time. This is the same study that previously identified the dangers of hormonal replacement therapy for postmenopausal women. In the study published in the British Medical Journal, antidepressants were estimated to cause 10 to 44 deaths out of a 1000 people over a year, depending on the type of antidepressant. In comparison, the painkiller Vioxx was taken off the market in the face of evidence that it caused 7 cardiac events out of 1000 people over a year. Since cardiac events are not necessarily fatal, the number of deaths estimated to be caused by antidepressants is arguably of much greater concern. An important caveat is that these studies were not placebo-controlled experiments in which depressed participants were randomly assigned to placebo or antidepressant treatment. For this reason, one potential problem is that perhaps the people who were taking antidepressants were more likely to die because they had more severe depression. However, the paper published in the British Medical Journal was able to rule out that possibility because they controlled for the pre-medication level of depressive symptoms. In other words, even among people who had similar levels of depression without medication, the subsequent use of antidepressant medications was associated with a higher risk of death. These studies were limited to older men and women. But many people start taking antidepressants in adolescence or young adulthood. Moreover, since the risk of a relapse is often increased when one attempts to go off an antidepressant (see point 3 above), people may remain on medication for years or decades. Unfortunately, we have no idea how the cumulative impact of taking antidepressants for such a long time affects the expected lifespan. In principle, long-term antidepressant use could shave off years of life. It is commonly argued that antidepressants are needed to prevent depressed patients from committing suicide. Yet there is a well-known controversy over whether antidepressants promote suicidal behavior. Consequently, it is not possible to reach any firm conclusions about how antidepressants affect the risk of suicidal behavior. However, most deaths attributed to antidepressants are not suicides. In other words, antidepressants appear to increase the risk of death regardless of their effects on suicidal behavior. We suggest that antidepressants increase the risk of death by degrading the overall functioning of the body. This is suggested by the fact that antidepressants have adverse effects on every major process in the body regulated by serotonin. 12. Antidepressants have many negative effects on older people Most of the research on the adverse health effects of antidepressants has been conducted on older patients. Consequently, our conclusions are strongest for this age group. In addition to cognitive decline, stroke and death, antidepressant use in older people is associated with an increased risk of falling and bone fracture. Older people taking SSRIs are also at an increased risk of developing hyponatremia (low sodium in the blood plasma). This condition is characterized by nausea, headache, lethargy, muscle cramps and disorientation. In severe cases, hyponatremia can cause seizures, coma, respiratory arrest and death. The fact that most research has been conducted on older people does not mean that antidepressants do not have harmful effects on the young. As previously discussed, antidepressants can have harmful effects on development. Moreover, many people start taking these drugs when they are young and remain on them for years or decades. In principle, the negative effects of these drugs could be substantial over such long periods of time. Altogether, the evidence leads us to conclude that antidepressants generally do more harm than good as treatments for depression. On the benefit side, the drugs have a limited ability to reduce symptoms. On the cost side, there is a significant and unappreciated list of negative health effects because these drugs affect all the processes regulated by serotonin throughout the body. While the negative effects are unintended by the physician and the patient, they are perfectly expectable once you understand how these drugs work. Taken together, the evidence suggests that these drugs degrade the overall functioning of the body. It is difficult to argue that a drug that increases the risk of death is generally helping people. There may be conditions other than depression where antidepressants are generally beneficial (e.g., as treatments for brain tumors and facilitating recovery after a stroke), but further research in these areas is needed (see our article). Ethical and Legal Issues Physicians and other medical practitioners have an ethical obligation to avoid causing greater harm to their patients. The Latin phrase primum non nocere (“first, do no harm”) that all medical students are taught means that it may be better to do nothing than to risk causing a greater harm to a patient. Although all prescription medications have adverse side effects that can cause harm, practitioners have an ethical obligation to not prescribe medications that do more harm than good. The evidence we have reviewed suggests practitioners should exercise much greater caution in the prescription of antidepressants and to reconsider their use as a first line of treatment for depression. Additionally, we suggest that physicians and other medical practitioners should consider their potential legal liability. Legal liability for prescribing antidepressants Medical practitioners can be sued for prescribing antidepressant medications if doing so violates their state’s standard of care laws. In most states, the standard of care is what a “reasonably prudent” practitioner in the same or similar field would do. The standard of practice is not defined by what the majority of physicians do because it is possible for an entire field to be negligent. Since studies on the health risks associated with antidepressant use (e.g., stroke, death) have been published in well-respected medical journals, medical practitioners could possibly be vulnerable to malpractice lawsuits. For instance, it seems likely that a reasonably prudent physician should be aware of the medical literature and avoid prescribing medications that could increase the risk of stroke and death. Prescribers can also be held liable for not discussing information about medical risks so that patients can give informed consent for medical treatments and procedures. Prescribers have a duty to discuss the benefits and risks of any recommended treatment. Consequently, medical practitioners should discuss with their patients that antidepressant medication is only modestly more effective than placebo and could increase the risk of neurological damage, attentional impairments, gastrointestinal problems, sexual difficulties, abnormal bleeding, cognitive impairment, dementia, stroke, death, and the risk of relapse after discontinuation. Antidepressants must cause harm to create liability A medical malpractice lawsuit can only succeed if the antidepressant caused harm to the patient. It is important to realize that the antidepressant does not need to be the only cause of the harm—it only needs to contribute to or exacerbate the harm. As we have argued, antidepressants play a causal role in many adverse health outcomes because they disrupt serotonin, which regulates so many important processes throughout the body. This may make it particularly difficult for a medical practitioner to defend against a medical malpractice suit from a patient who experiences any of a number of adverse health effects while taking an antidepressant. For instance, if a patient has a stroke while taking an antidepressant, the evidence that antidepressants increase the risk of stroke suggests that the antidepressant may have contributed to the patient’s stroke, even if it was not the only cause. Conclusion The evidence now indicates that antidepressants are less effective and more toxic than commonly believed. From ethical, health, and legal perspectives, it seems prudent for individual practitioners and professional medical organizations to revise informed consent guidelines and reconsider the status of antidepressants in standards of care for many diagnoses and as the front line treatment for depression. With older people, for instance, the current data suggest informed consent must include a discussion of the increased risk of hemorrhagic stroke and even early death. We suspect that if prescribers realized they were placing themselves at legal risk for failing to discuss the adverse health effects of antidepressants with their patients, not only would they be more likely to discuss such information, they would be less likely to recommend these drugs in the first place. Paul W. Andrews is an assistant professor in the Department of Psychology, Neuroscience & Behaviour at McMaster University in Canada. He has a PhD in Biology from the University of New Mexico and a law degree from the University of Illinois at Urbana-Champaign. His work on the evolution of depression with J. Anderson Thomson, Jr. has been featured in the New York Times Sunday Magazine and Scientific American Mind. Taken with respect and gratitude. directly from ANNECWOODLEN’s Blog BEHIND THE LOCKED DOORS OF INPATIENTS PSYCHIATRY. http://behindthelockeddoors.wordpress.com/2014/01/12/you-and-your-antidepressant-2/
Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the “anti-psychotic” pills you take (or I’ll add in for good measure, god help us all, the “anti-depressant” pills) are doing what we were always told they were supposed to do. Or if you don’t work or care for a family, if not, do you at least live a fulfilling single’s life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who’s to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen…most of them not drug related at all. One simply cannot worry about a “what if” future, when the present is so bright.
So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don’t need me, and you won’t want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.
But this is a SHOUT OUT to you, there, who don’t like your drugs and don’t want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do, forewarned is forearmed…This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told. (I likely won’t have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants…You could turn to MAD IN AMERICA by Robert Whitaker for a take on those — just check out his chapter on Prozac for a taste…) It isn’t that AP drugs do nothing at all. They do attack the brain’s neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven’t even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.
Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that’s because it is as old as the hills and as tiring. You don’t have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.
Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would “work” against schizophrenia. Because the theory was, both in ECT and insulin coma, as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them “better” and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving…at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!
Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic (“brain seizing”) drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..
But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. “Schizophrenia is an illness just like diabetes.” That was the canard I was told in 1980 — we are still being handed the same disgusting lie! — when I was first officially diagnosed with the condition, or told the name to my face at any rate. “You’ll never recover, and you will likely have relapses, but you won’t be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn’t a death sentence these days but it IS a life sentence…” So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn’t know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn’t read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist…which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart…You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for “schizophrenics.” It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning’s dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.
Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses…until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.
MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn’t. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system’s poverty and being sick. And once in a while that person’s husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn’t fall into the trap of SSDI after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again…
But alas, that didn’t happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two…
But I digress, I digress, so let me tell me my own story, if I have the time and energy.
I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren’t mind, my sister has control of them! And I can’t sleep, I can’t sleep!
Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I “needed” in the throes of my illness?
I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia…The rest, well, if it isn’t everyone’s history, it is a version of it. And it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good…I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them…
So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough, you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don’t respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation…So they did that, and they kept me in seclusion for weeks at a time…until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there….I had a life, yes, but it wasn’t much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn’t know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn’t even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.
It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis… I don’t have a bed, only a recliner I should not sleep in…I am a mess, and I am also NOT going to continue to take my Abilify and Geodon much longer…I cannot. I cannot. I do not know what will happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.
More later, or on another day. Sorry this was so impassioned.
TAKE THESE BROKEN WINGS…
This is an incredible video, which, though long, is well worth watching. For anyone who believes that recovery without medications is impossible or not likely, you should watch this with at least half an open mind. And for anyone who has given up hope, this should give you a lot of hope. I usually cannot watch entire videos half this long, but I watched this one all the way through, even though I admit I had to take breaks because (Yes, I take meds myself) my attention span is short…But it was worth it to learn that one of the women featured not only recovered from her severe schizophrenia without taking psychiatric medication, she remained absolutely psychosis free and became a psychiatric nurse for 30 years. What I would give to speak to her about the sorts of treatment, or abuse that passes for treatment here in CT! But be that as it may, do watch this if you can. It is absolutely astonishing. And beautiful too.
I swore that after I left Hartford Hospital’s Institute of Living last January, 2013, having spent the better part of a month in seclusion and many many hours brutally and punitively four-point restrained, I swore I would never go anywhere that would treat me like such an animal again. But then, having twice been treated at Yale New Haven Psychiatric Hospital once in early 2013 and finally later on that same year, discharged with piriformis syndrome from having been forcibly held down and injected in the buttocks over and over with 3 different drugs, Haldol, Ativan and Benadryl, I said that I would NEVER again permit such torture in the name of treatment anywhere, no matter what they called it. No not even at Yale.
Given the massive traumas I have experienced these past five to ten years in Connecticut mental hospitals, abusive practices that have only increased since my first hospital stays in the 70s, I decided last August, post Yale: never again. Never again would I go to ANY hospital whatsoever.
To that end, my family, my family of origin, since I never married and have no money of my own, has taken it upon themselves to hire for me (or let me arrange for myself the hiring of) several personal staff members to “come on board” for me in my apartment 24/7 starting in late December and if necessary work through January, if there is a crisis. I haven’t gotten through any January without a hospital stay in several years, so it is a good thing to be prepared, on the one hand. But the very fact that I need not fear the hospital now might also mean I can avert the worst of any crisis! Who can tell? All I know is that we are all talking about how to help me primarily stay safe from what the voices command me to do, and how to do so without panicking or calling 911.
One thing I insisted upon was NOT using any agency, because while they serve a function, I suppose, they also pay their workers shit. And someone who is paid $8 an hour is not going to want to do the same quality of job for me, while sitting with me in my tiny apartment as someone who is getting the entire $20/hour, if you get my drift. And why would they? I need people who are committed to keeping me safe from myself at the height of any craziness that might assert itself, and if the voices command me to grab a pencil and suddenly stab myself with it, as they frequently have, I NEED to know that the person I have hired will be right there with me, ready to grab it from me, not in the other room reading a book, or cooking, or yammering on the phone to a friend. For $20/hour I think it might not be too much to ask. At $8/hour it might be.
For $20 an hour, a person can stay awake all night and not need to work another job immediately upon going home, so I will know that if I wake up in my recliner and hear command hallucinations to set myself on fire, she or he will be right there to stop me. Because that is how it happens, has in fact happened just like that.
It is the only way to do it. Unless $20 somehow is not enough to cut it, pay wise, (and I cannot afford to pay more, over all) (the people I hired are also already not working other jobs either…) I think it is not a bad wage, is it? Honestly now, tell me. I am not asking for much else but for someone to sit with me, talk with me IF i feel like it, and watch me to make sure I stay safe. The worst thing would be boredom I imagine. But I don’t usually bore people even when ill. THat is not often their problem. The problems are other things, for me at any rate, and those are that the people that sit with me in hospitals have NOT done their jobs properly at all, and have ignored all the warning signs, even my open pleas to please please “do your jobs. I am on “one to one” for a reason!
No, in the hospital, the aides just turn their backs and stand in the doorway, facing outward, away from the room i am in, and gab with the other aides, completely ignoring the person they are supposed to keep their eyes on at all times. It is crazy. I remember a woman named Jennifer deliberately turned her back to me no matter where I stood in the room, and if I went in to the bathroom, she left the outer room entirely…which was such a rule breaker. She knew what was happening, I think she was playing a game to see if I was truly dangerous to myself or not…Or really just didn’t give a damn.
Is it any wonder that at one point at one hospital, I asked to get off that status. It was simple: I just told them I was safe and they were so glad to reduce their workload they stopped the one-to- one immediately. The next thing I knew the voices had me begging to use my makeup compact. the one with a small glass mirror in it.
“Sure, you can. Just make sure you bring it back to the nurses station in five minutes,” said the Nurses Secretary, handing me the little black plastic thing.
Well it took all of three seconds for me to stamp on it with a hard soled shoe, break the mirror and slice up my left wrist bad…
Of course, they punished me for that. Or they would have, I know. But I remember, I wrapped a huge wad of paper towels around all the blood and told no one for hours, so when I realized that I needed stitches and had to admit to what I had done, it was too late for them to respond with the punishment of 4-point restraints…
The point is, the aides weren’t evil. Not all of them, or at least their lackadaisical attitude was borne out of a lack of caring which itself was spawned by being paid little to nothing. Why should they care? It was just a job to most of them, and little better paid that flipping burgers at a restaurant. Worse than that, because they had no perks and no tips.
So when I hire someone to sit with me, talk with me, keep me safe both from myself and hospital abuse, I pay them $20 per hour (and even $30 per hour over time during snow storms etc), I expect them to be responsive and not lackadaisical. I do not think that is too much to ask or demand. My life and health and bodily integrity depend on it.
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