PLEASE GO TO THE LINK ABOVE TO OPEN THE SLIDE SHOW THAT I PRESENTED AT THE EIP COMMITTEE…
This is only part of what i have not been able to write about for months. And there is a great deal more. Now that “Mike” is formally being charged with Assault, i feel i can share this much. In the future i will say more. But for now, at least i will share this statement that i wrote for the police, some weeks later, which is only a second statement, as they already had the statement I originally wrote the very day the assault happened.
Alas, I do not have a copy of that statement, which another ER nurse had to transcribe for me as I was not permitted the use of an ink pen at the time. It was also after I had been illegally but forcibly administered IM Haldol, despite the fact that the record itself shows that I was lying on my bed in my room with my headphones on and the lights off. The record also shows that an order for PRN 4-point restraints was entered into my chart at that same time. And this PRN order was kept there for the entire 8 days that I was held captive in that Emergency Room, a matter that the lawyer’s grievance deals with but for which a mere grievance seems hardly adequate.
Let me start at the sort of beginning, which is to say only that I had been hospitalized by force at R— at the State Hospital Unit there — and I will talk about that experience in a whole different post. But after 6 weeks I was discharged to a step down facility largely because I had so alienated the hospital doctor that he wanted to get rid of me…Let’s face it. I told him each time I saw him, “Get lost, I do not want to talk with you, You are useless!” Needless to say, this did not go over well, useless though he may have been. And though I found the Social Worker very helpful and so too many of the nurses and mental Health workers and the Occupational Therapist was wonderful as well, but ONLY THE DOCTOR mattered. At least in his own mind, and so he arranged to discharge me somewhere I would no longer get under his skin or on his nerve i.e. anywhere but in his hospital!
That this step down facility had no medication supervision, beyond opening a safe and having a resident take whatever she or he wanted, this mattered little to the doctor, apparently. Despite his insistence that I needed the medications to such an extent that I have been on a so-called ONH or “order of non-hospitalization” for months now, meaning that wherever I am, I can be hospitalized if I do NOT take the meds, as contradictory and gobbledigoookish as that sounds! SO I was sent off to R–, Vermont, to await a bed first at Alternatives and then a more or less long term placement at MRR in Brattleboro, where I am today. (Though how I got here was not via that route as it turned out.)
But in R, Vermont, I did not last longer than a week at the step-down facility as I failed to take the meds and I suppose this is why I ended up trying to set my hair on fire, after receiving commands from “on high.” That is also why I was at the ER when what I describe below occurred.
I knew when the staff member left me alone in the ER, after she walked away and left me there, that I was sunk, that I was going to end up back in the hospital, and with that realization, my heart plummeted. I did not want this, I did not want it. I decided then and there to do all i could to be compliant with the doctor and the crisis team, even more so than I already had been, which was plenty. I asked if I could take 10mg of Zyprexa. I even suggested it before the Crisis Team could get there. But it did me no good. They took one look at the report from the step-down facility staff member, who told them about how I had waved lit cigarettes near my just-washed hair and singed it, and they decided — in the lingo of Emergency Crisis teams, that I was “a danger to myself” and could not leave and had to be hospitalized against my will. This would not do. I said as much. I said,”I do not want to go to any hospital. I do not do well in hospitals. I want to go back where i was. Please do not make me go to a hospital. I want to leave”. And with that. I got off my gurney, as I recall, and I am sure the hospital chart can correct my memory if faulty for details now, and proceeded to walk slowly towards the door. I walked slowly because I did not want to trigger an assault by the goon squad. And I did not want to scare anyone into thinking I was doing anything besides deliberately and consciously choosing to leave. But as I did so, a man, a nurse, followed me. I walked slowly out the main door, still dressed in hospital pajamas, since where was I going to obtain any clothing? And I took about 10 steps when he yelled at me, “You go any farther and I am calling the police!”
Now I will let my statement take over the account.
“I want to scream to someone that i saw in the eyes of the nurse who attacked me someone who recognized Satan and that was why he started screaming at me so uncontrollably before i did anything as “Pam” to “deserve it.” Do you understand this? This should have been obvious to anyone watching the video, but i do not yet know where we go off camera…i only know these facts: that he told my body that if it took another step away from the hospital (i had already walked slowly out the main hospital doors) he would call the police. I believe i shrugged and said, “Go ahead and call them.” Then i decided, remembering the Springfield VT police brutal tactics not to trust them in R—– and so i turned around maybe fifteen feet from the double doors deciding to return and proceeded, again slowly, back towards the entryway. It was then that this nurse started to scream at me. i was shocked at this, because i had already reconsidered and was returning under my own steam. i objected to his screaming and i asked him, likely also loudly, why he was screaming at me when i was already complying. He continued screaming even louder and then he grabbed me and bear-hugged me in a suffocating restraint hold that set me off big-time. He is a big man, and i could not get away from him. He dragged me into the hospital lobby, where, desperate for release, i kicked backwards at his shins.
This must be what so enraged him that his reaction was to throw me forcefully to the ground and jump on top of me, mashing my face into the carpet in such a frenzy that i feared he was going to kill me. I could not breathe or even scream for several long seconds as he continued to grind my face into the carpet. I was terrified for my life and did not know when or whether he would stop. Finally –i never knew what made him stop – maybe someone came out of the nearby ER and saw him attacking me? Whatever was the case, he hauled me back to my feet. At this point i was breathless and extremely frightened, but i nevertheless screamed at him in fury, “You rapist!” I may even have screamed, “You fucking rapist!” I really don’t know. I only know “rapist” was the worst thing i could think of to call him as he had violated every ethic of nursing and emergency care-giving possible and as far as i was concerned he had raped me just as completely as any man who violated my sexual parts.
Unfortunately for me, this only served to further inflame a man already too out of control for explanation, except as someone who felt face to face with Satan: his reaction was to haul off and slap Pam’s face, to shut her up, grabbing my mouth so i couldn’t scream that word any longer.
Maybe someone came out and helped her at this point but I do not recall, even though it might have happened. The next thing i remember is screaming from inside my room in the Emergency Department for a long while and when the police officer appeared, begging him to listen to what the nurse had done. He clearly did not believe me. All he did was leave a statement form for me to fill out –i repeatedly informed him that the Emergency Department staff did not permit me access to pens — and he told me i would have to somehow transmit my statement, signed and notarized, to the police station on my own.
In the meantime, i overheard the same nurse, who i believe was called Mike, telling falsehoods about how i had run into traffic while heading towards the train station. I objected loudly and vociferously. All i got for this was to be restrained yet again, this time by the same police officer among others, and despite my repeatedly asking what medical emergency justified it, to be forcibly injected with Haldol, a medication that my Advance Directive — which the ED had noted and logged in that very night– explicitly directs is never to be administered. This same drug was given to me against my will and over my strenuous objections, even though i lay on the bed the whole time. I was not overtly agitated by this time. At no time was i was more than tearful and most certainly never out of control.
I later complained of ribs (left ) pain — from how hard Mike had compressed me either in his restraint hold or when jumping on top of me, and knee abrasions (right) the latter from being dragged on the carpet. i told the ED personnel several times that night and over the next few days i spent in the Emergency Department. They never looked at my ribs or my knee to appraise these injuries, not until a few days later when Dr Sandy C—— ordered x-rays.
Because no one would document these injuries i was forced to photograph them myself in the mirror.
In the next few days I will be writing and having a guest post from someone but today I want to write about a frustration that has got my goat bigtime. It has to do with the letter that I wrote to Kathryn Power, “bigwig” at SAMHSA or, for those of you who wonder what the letters stand for, the Substance Abuse Mental Health Services Administration, for Region One, which covers the New England region.
Apparently she took my letter very seriously, which I did not know. This may have been because I never received her reply, if she sent one, having given her the wrong return address ( I did not know the proper one where I was to be living at MRR in Brattleboro.) Or it may be because she failed to copy me on any of the emails she sent to any of the parties she subsequently wrote to, both in the Federal government and at the state level. Whatever the case may be, apparently she wrote to several officials, including the Connecticut Department of Mental Health and Addiction Services and possibly the Department of Protection and Advocacy ( which dumped me completely after assuring Susan Stefan, Atty at law known for her work against seclusion and restraints, that they were working closely with me). I never knew this, nor have I learned the outcome of these contacts. I only just today received faxed records of these initial emails.
So I know that Ms Power contacted Mirian Dephin-Rittmon who is the new commissioner of mental health in Connecticut. I would like to think that Ms Dephin-Rittmon responded somehow, but I have no such evidence, and if the response from Patricia Rehmer, her predecessor, is any hint of what I could expect, then the answer will b: NOTHING, nada, zilch, a big fat zero. And why is that? Because in Connecticut the Commissioner of Mental Health and Addiction Services, while she may nominally be serving all citizens with mental health problems, actually has no such mandate. Not at all. She serves in fact ONLY those who are hospitalized in STATE facilities, which are extremely limited, and how lucky for her, and in fact for them, because they get protections that none of the rest of us ever got.
It was not that we were not indigent and also on Medicare and Medicaid, and also on SSDI and possibly on SSI. Most of the patients at general hospital psychiatric units in Connecticut, if they are repeat offenders of any sort, are usually on assistance of this kind. How could they not be? Most have been “disabilified” – that is, disabled and made into disabled-thinking persons — by medications if not by illness and by the systematic undermining of their personhood by the State. (I know, that is an argument that needs to be enlarged, but elsewhere, elsewhere…) But they are not in State facilities, decidedly not. Why is that? Because courtesy of the State Government, most state facilities, especially for adults, have been closed down or turned into prisons.
So if you need a hospital, you must go to a general hospital psychiatric unit where the Commissioner of Mental Health and the Department of Mental Health actually have no jurisdiction or sway. Literally the only way you can get into the safety zone of a State Hospital, that is to say, into the ONLY state hospital that now exists in Connecticut, Connecticut Valley Hospital, is by being thought such a bother to the nursing staff at a general hospital that they want to get rid of you, and they send you off to CVH for “longer term treatment.”
But this, mind you, is a punishment, it is not something that they do out of caring or attempts to render better treatment. Not at all, and I should know. After all, I have been threatened with such “treatment” several times, and the last time was when I was at New Britain Hospital in 2014. There, because I was labeled “a borderline” and therefore dismissed as manipulative and dramatic. Every word I said was disregarded…Nothing I could say was taken seriously. And every act was regarded as willful and deliberate. So they could justify punishment and torture as my just desserts, and they tortured me by dragging me to the seclusion cell for swearing under my breath, and four-pointed me for hitting my head lightly against a wall, after they stripped me naked in the cell and I begged for a blanket they pointblank refused me ….
You see the picture? I was “so impossible to deal with” that they were going to “send me away” as punishment and in revenge.
We all knew this, we all knew that CVH was the last stop, their last resort and final punishment for those of us so obstreperous as to object to their outrageous brutalities and keep objecting rather than bow our heads and submit. In the end, because I was so determined to get out, to escape to Vermont, I did, I gave in and gave up and submitted, and it worked. I played their game and got out of their abysmal unit. I submitted, for which I cannot forgive myself…
My point here though is that it is only when a patient has been deemed such a pain in the ass that she is sent away, sent down the river to CVH that Pat Rehmer or Miriam Delphin-Rittmon ever comes into the matter. Before then, they are not interested or concerned with what happens or happened for that matter. They do not give a damn. Not that they don’t care about torturous seclusion cells or four-point restraints in general, it just ain’t their juris-my-dicktion to care about what happens to patients in city hospitals. Sorry, but it ain’t. So they don’t pay attention. They just can’t and so they don’t. It is, as my friend Josephine says, always as if newly minting the expression, what it is!
That said, there is Capitol Region and the Connecticut Mental Health Center too, but they serve exclusively the uninsured, so that of course was not for me, who have been covered by Medicare and Medicaid for years. So lucky me, I could luckily go to New Britain General Hospital and be tortured by the likes of Michael E Balkunas, with utter impunity because DMHAS has no oversight or jurisdiction over these psychiatric units, NONE WHATSOEVER.
Did Kathryn Power not understand this when she wrote to Miss Miriam? Apparently not. She might have believed that the Commissioner of Mental Health in Connecticut could or would do something to help a mentally ill elderly citizen who had been tortured in a psychiatric unit in Connecticut. Foolish Kathryn! And then maybe she thought that Protection and Advocacy could be called upon to help me as well? Oh, what a sad, sad day for Ms Power when she learned, or did she, that P and A in Connecticut has no interest in helping anyone? Did she really think I had not applied myself to anyone for help before I went to her? Where does she think I have been for the last year? Doing nothing? I have tried and tried and tried and tried. But no one answers and no one does a thing!
Oh, I could laugh if I were not so broken and so sick at heart. But I will not let the fuckers win because then the torture will just continue unabated. No, I will continue to nip and snap and irritate Mikey B. and the nurses at W-1 at HOCC in New Britain until they themselves cry “uncle” and change their ways. I will not stop until they are stopped in their brutality and stop hurting people. I will never cease this campaign until I know that patients at W-1 are safe from harm or W-1 is closed down and I am certain that Dr. Balkunas has lost his license for good.
But the worst thing was that Ms Power finally sent the letter to the Office of Civil Rights (OCR) in Boston which was directed to open a Complaint! Yes! But just whne I had hope for this, bizarrely enough, they closed it on the basis, get this, that my complaint “alleges abuse at MANCHESTER MEMORIAL HOSPITAL IN APRIL OF 2008″ — Say what?????? Huh? !!!!! My letter does no such thing. It never mentions Manchester Hospital at all. Why would it? I had never even been there in 2008 or before 2009. And the first time I was EVER at MMH was in October of 2009, so WTF??? THis is so bizarre and so outrageous and so disgraceful a reason to deny my complaint a basis to go forward that I have had it…To say in the first paragraph that I allege torture at New Britain Hospital in 2014 and then in the fourth or fifth paragraph to somehow segue in this extreme non-sequitor to alleging something in Manchester Hospital in 2008, when I was NEVER THERE…just gets me down completely, because you know, no one in the chain of information who saw this and they did, NO ONE CALLED THE OCR on this or told them to get their act together and fix their mistake,.no they essentially let it go and made me suck it up…
FUCK THE THE ASSHOLES I cannot take this shit any longer. FUCK THE WORLD I WANT TO GET OFF! I have had it. I’ve had it, No one gives a damn about anything…I give up.
Dear Kathryn Power,
In May 2014, mute and psychotic, I was taken to Hospital of Central Connecticut in New Britain’s Emergency Department by ambulance. My visiting nurse, in concurrence with my outside psychiatrist, had called 911, concerned about my safety and my ability to function because I had not spoken for weeks and was not taking adequate care of myself. I was not agitated, instead, I was unable to speak and slowed down rather than anything else.
More than a year has passed since then, so instead of relying on memory, I will paste here what I wrote shortly after my subsequent hospital stay, with edits for clarity and concision. Some has been taken from the secret journal I kept in that hospital, a journal which I was forced to scribble on pieces of torn-up brown paper waste basket liners, surreptitiously mailing them to a friend immediately the moment I finished writing. I had to do it this way because a housekeeping staff member had told me that nurses instructed her to throw out everything in my room, including first class mail, each time they found a reason to seclude me, which was frequently (nearly every day in fact, and sometimes more than once a day.)
More on this follows.
But first let me tell you what happened in the Emergency Department. I came in by ambulance. I did not want to but was given “either the easy way or the hard way” choice by the police who came with the 911 call. I did not resist or fight, nor was I restrained in any way in the ambulance. As I said, I was mute, which had deeply concerned my Visiting Nurse, and mostly passive. I merely handed the EMTs my medication sheet and my detailed but clear Psychiatric Advanced Directive. This is critical as on page one and two are clearly typed vitally important information about my trauma history and how to deal with me in a crisis, including provisions for when I might be mute.
The first page of the ED chart states that availability of my Advance Directive is “unknown.” Nevertheless, the ED triage note states, with apparent disapproval and resentment, that “pt presents with detailed instructions on how to provide her care..” i.e. the psychiatric advance directive. This seems to have been immediately disregarded, as insulting to their knowledge…
ED Nurses note: “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.” [*sun-glasses are “hater-blockers” yes, but they block other people’s hatred. The RN never got my point and I was mute with no way to communicate the distinction…] “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 art book. She just took it. She refused to allow me any other means of communication, except speech. When I was unable to do this, she did not inquire as to why I did not speak nor apparently did she attempt to make inquiries from anyone else 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 appeared to become angry and from then on refused to permit me any mode of communication other than the one she preferred.
I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so.
Beth RN records what happened after a meal was given to me that I did not eat (it was not vegetarian).
“Pt ate nothing,” Beth RN reports, “[but she] wrote messages with ketchup and French fries, [saying] ‘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 got 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 threw 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…”
In point of fact, fact I never attacked or even tried to attack the nurse as you will see.
And the nurse knows this, because she backtracks in the chart and says so, here” the Public Security was “able to get to pt first” so she knows full well that I never ‘”tried to attack her” and they knew they had no right to restrain me. The chart alone makes it clear that I never did a thing. She would not have phrased it that way if I had attacked her, or even attempted to. No, if I had attacked her, she would said so. In those terms. Not in uncertain, vague terms. She never would have said what amounts to, “Oops, patient attacked me, but the guards got to her first before she, um, tried to attack me, so really she just wanted to attack me, I think, but never really did, so…um, she never did even really try to attack me, I just assume she wanted to, but like, you know, I can’t really be sure, like, that she wanted to attack me she just looked really, really mean and she wasn’t saying a word, so I betcha she did, and I am really, really glad those guards stopped her from trying to attack me just in case she, like, might have wanted to try to attack me, you know?”
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 the chart puts them 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 leapt off the gurney and 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, in fact while they were holding me down (I was mute, mind you, so remember that they thought I was also deaf, or forgot I was not) decided to create this story in order to justify 4-pointing me, because they simply wanted an excuse to do so.
What really happened was that due to my need to communicate, I wrote my needs with ketchup on the paper box the meal came in. Then that too was taken away from me, and Beth came up to me, and instead of speaking to me, handed me a NOTE she had written (the irony of this is beyond belief!) saying, “I will not speak to you or give you anything to write with until you start speaking to me.” At this point, I was livid and also so desperate to write I had no choice but to use whatever I had at hand.
So, yes, I did do as she wrote in the chart: I went to the bathroom and had a bowel movement and took some feces back to my cubicle and I tried to write journal entries about what was happening to me on paper towels with my own fecal material. And no, this did not go over very well with Beth or anyone else. But I never attacked Beth or even tried to assault her. Instead, she snuck up on me and snatched my art book out from under me and raced away with it, holding it up in triumph as she did.
I was so furious that without even a thought as to possible consequences, I raced behind her intending only to grab my book back. That was all. I never assaulted her, I never so much as touched her. I wanted only to only grab the book back that she had not asked to take from me. Period. As she suggests when she says, “public safety was able to get to patient first.” Well, in fact I had never any intentions of “attacking Beth or anyone else and the guards knew it. But the fact is, I never touched or attacked anyone, they grabbed me and attacked me!
That was the point when they dragged me to “Room 42″. The two guards, holding me down, decided they wanted an excuse to four-point me, and though one of them cautioned that they really had no reason to do so, the other one told him not to worry, “we’ll find a reason.” And as I learned shortly thereafter from accusations of my having assaulted a nurse made by Dr. Michael E. Balkunas, they did so.
But just because an accusation is made doesn’t make it factual or true, as we all know, and just because Michael E Balkunas accused me of lying about it, and again when I later informed him about them stripping me and leaving me naked in the hospital seclusion room doesn’t mean he was correct 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” — a “borderline” — essentially a prime-time liar. He had already conceived an intense antipathy towards me, so by the time he finally came by to see me on the W-1 Psych Unit the next day, he had made the decision not to let me communicate by writing. Therefore, his intent right from the start was not to let me tell him what was going on. He decided, from the very first moments, not only not to recognize the desperation and extreme frustration this induced, but to see only violence and willfulness in me. His solution? Punishment and torture. Period.
But I am getting ahead of myself. Michael E. Balkunas, MD, the director of New Britain Hospital’s W-1, claimed to have been there when the ED incident I describe happened, when the guards said that I just shot up off the gurney and spontaneously attacked Beth, the RN, from behind. But the record does not bear this out. In fact, he never saw me at all on the evening of May 12: all the orders were written by other physicians. Dr Balkunas’s name is not even mentioned until the afternoon of May 13 when it states only that he was at my bedside to evaluate me. Even then, from what I recall, I was so sedated after multiple forced medications, use of four-point restraints and seclusions, that I was unable to answer a single question. Since I could not speak, given the fact that Balkunas too refused me any writing implement the interview was as unproductive as could be imagined possible.
I was to be admitted to W-1 on the basis of his judgments from that single brief evaluation, from which he drew the diagnosis that in addition to schizophrenia, I had a probable “borderline personality disorder.” (He spoke to no one in my family nor my longtime nurse or doctor nor my friends…and he did not even hear from me, yet he drew this snap conclusion on what basis???? And yet it hideously affected my treatment at the hospital)
How could he possibly diagnose a personality disorder, seeing me in such traumatic circumstances and for a few minutes only? In point of fact, what likely happened was that he took a disliking to me, and diagnosed me with something that in his mind justified his later egregious treatment of me, and in particular justified his disallowing me to write instead of speak. I cannot otherwise explain his behavior. Nor can I understand his astonishment at my response when I did not react well to these punitive ministrations. Why did he think I would respond positively? Why did he think that coercion would be beneficial? Did he truly think his “treatment” would be restorative? What I think happened is that he decided he did not like me, right from the moment he laid eyes on me — I may even have been naked in restraints, who knows?– and so he opted, as many men do, for savage abuse and punishment.
But there are policies at W-1 that hurt everyone, not just me.
“I want to explain what “deserving” seclusion or restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut on Grand Street in New Britain) means in 2014. I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion or four-point restraints when absolutely essential, when a patient is out of control and extremely violent, and cannot be controlled in any other way.” Trust me, I know. They have said this sort of thing to me in each and every single Connecticut Hospital I have ever stayed in, except for the “old” Hartford Hospital’s CB-2 psychiatric unit in the 1980s-early 1990s, when Sharon Hinton APRN was the head nurse. I do not recall ever hearing about any seclusion and four-point restraint policy. I know for a fact they had NO seclusion cell, and while I spent many admissions starting out in their “secure unit” what we got there was simply more attention, and more care, not more abusive control.
But what you need to know is that they are NOT talking about some 400-pound man hopped up on PCP, waving a machete. For one thing, that person, I believe is largely mythical, or if real now largely confined to correctional and law enforcement settings. The person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I. I am the rule…The person they secluded or restrained almost without exception at hospitals like New Britain and Manchester and Middlesex and the Institute of Living was none other than me.
So let me tell you about me. I will turn 63 years of age in November. I am 5 feet, 3 inches tall, and until I moved to Vermont, I weighed, maybe 108 pounds on a good day, Furthermore, I have been consistently described as “poorly muscled.” Not only has my right shoulder been recently injured by staff encounters at New Britain’s hospital, but I before I was hospitalized at HOCC I was unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the NBGH/HOCC nurses/security guards knew (they stated it out loud) and used to their advantage when subduing me.
I also want you to know that I am a decades-long vegetarian on the principle of non-violence — and have always believed in non-violence to people as well as to animals. I have opposed the death penalty since I was a nine-year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted criminals as we do. Yet in many Connecticut hospitals since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either holding me down by brute force, 2 people to each limb and one to my torso (this was at the only 2 hospitals that did not actually resort to mechanical four-point restraints– compared to the half dozen others that did), they routinely injected me with two to three drugs as chemical restraints (really punishment drugs, as I frequently called them, without anyone correcting my perception) whether they were required or not.
I am the rule, not the exception, I am this supposedly “extremely violent mental patient” who is so O.O.C that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical person they claim they absolutely must have the right to resort to the use of violence, for their own safety and mine.
Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, on W-1 this is what happened.
Michael E Balkunas MD, head of W-1, wrote that “while in patient 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 a bad thing, and then they proceed to disregard every item on it. Not only that but after Balkunas accuses me of behaving with “volition” (whatever this is meant to prove) he never actually adduce any further facts or observations to back up what he means, except that I brought with me the large psychiatric advance directive and a published book of art work I had done.
This book of my art, by the way, was deliberately kept from me the entire time I was on the unit, because, I was told it would be extremely harmful for the other patients to see it. The nurses repeatedly reinforced this message: any glimpse of my art would hurt them. This was emphasized to me: I should feel guilty not only for having brought the book with me, but for having drawn the pictures at all. The RNs seemed to enjoy my feeling bad about this….
Balkunas further claims in the chart that he repeatedly “asked if patient would like to speak to him, please,” but what he fails to note is that he refused to permit me any possible mode of communication. He also peremptorily walked out on me when I could not utter a word. He notes that, yes, I threw my bed-clothes at him, but fails to mention that he would not acknowledge my gestures or try to figure out what I wanted to say. Instead, he stood up in disgust and turned on his heels and left.
I admit that having already been secluded, 4-point-restrained and forcibly sedated in the ED, and then called a liar by the doctor who was supposed to care for me, I was very upset at being unable to make him stay, to make him listen or attend to me. So I did the only thing I could do to make noise of any sort. I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder.
This was not intentional. I scarcely recall doing it, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ED, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal.
Enraged, his face beet-red, he bellowed at the nurses to order guards to take me immediately to the seclusion cell.
“Seclusion! Seclusion! Restraints! Restraints!” he screamed. Before I could do anything or even consent to walk there, I was bodily dragged down the hall by my injured shoulder to one of the most horrifying seclusion cells I have ever seen. There were two cells, actually, each lockable from the outside, completely barren and cold except for a concrete slab of a bench set into the wall, with a plastic mattress on it. Nothing else. No commode, no bedpan, nothing but two cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door across the other room, so I was thoroughly alone and soundproofed from the rest of the unit, and then turned their backs and walked away.
I panicked immediately. I urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Nada. Zilch. Not a word. I did not even understand at that time that there was an intercom somewhere that they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I knew, yes, I knew, what would happen, I knew this because it was SOP. It was what always happened to me in Connecticut’s torture-chamber hospitals. But I was freezing in there with the A/C on full bore and at 108 pounds and a history of frostbite I could not tolerate being cold. Furthermore, with neither a watch nor any clock on the wall, I had no inkling as to how long they would keep me there. It might be two hours or twenty, or it might be three days. All I knew was that I could not tolerate the isolation, one, and two, I could not survive the freezing temperature.
So I took the flimsy johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it, as if to strangle myself. This was a futile endeavor of course, because I couldn’t keep pulling on it without eventually letting go and then I’d breathe again. I didn’t want to die. I just wanted it to look outwardly as if I were strangling myself so someone would come in to check on me. Then finally I thought I would be able to explain that I was freezing cold and just please please please would someone give me a blanket?
Well, would that anyone were so reasonable! But no such luck…
Oh, yes, the intercom did crackle to life eventually and someone interrupted. “Pamela, take that away from your neck. Now.” I gestured to indicate I was freezing. The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but clearly, “I need something for warmth!” No doubt you can guess that this was a battle I was destined to lose…as it was designed to be.
Eventually, but not so quickly as to show that they had any truly serious concerns about my safety, guards and nurses entered the room, along with a gurney. Grabbing me, injuring my right shoulder as well as my left in the process, they hoisted me onto the gurney. Without even covering my nude body, they locked me into leather restraint cuffs, wresting me into a painful and illegal spread-eagle position, despite my groans of pain and protest. Then to cap it off, they refused me a blanket. Someone tossed a small towel over my private parts and that was all. I was summarily injected with three punishment drugs and an aide was positioned at the door. Then the goon squad trooped out.
I screamed in rage for at least ten minutes. The aide just looked away, pointedly ignoring me. When I finally quieted, I tried to signal my desperate need for water and for warmth, but the aide pretended she did not understand me. But she did understand me and when she finally acknowledged my requests, which I mimed with difficulty from the restraints, she refused, stating that a blanket was unsafe, a pillow unnecessary and that it was my own screaming that had made me thirsty.
The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to shackle a patient to a bed – or being isolated by force in a freezing seclusion cell has to be universally terrifying and traumatizing. Nevertheless, both cell and/or four-point restraints are quickly employed to curb loudness and “undesirable behaviors” at the Hospital of Central Connecticut on Grand Street in New Britain. I know this because I was subjected to both seclusion and 4-point restraints multiple times in May and June of 2014, despite being admitted with a previous diagnosis of chronic paranoid schizophrenia, and documented PTSD, triggered by precisely these methods of “behavioral control.”
Bizarrely, Dr. Michael E. Balkunas wrote on my chart, “Patient mis-perceives her treatment as traumatic.” Well, maybe so, but I think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while shackled to a bed for 19 hours nearly daily, which is what they did at Hartford Hospital’s Institute of Living in the winter of 2013. This was after I was told to lie down and place my own limbs in the leather cuffs (“as a consequence but not a punishment”) for walking away from the very same “Side Room” that I had just been assured was “not a seclusion room unless you call it a seclusion room.”
Again, maybe I mis-perceived being grabbed and held face-down and nearly suffocated numerous times by staff at Yale New Haven Psychiatric Hospital in August 2013, where they would twice or three times a day forcibly inject into my buttocks 10 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic mis-perception” on my part? Maybe—and then again, maybe not.
Nevertheless, the fact remains that in the ED of New Britain’s HOCC, a security guard in May 2014, grabbed me by my left shoulder immediately after he was warned by the nurse that it was my left shoulder that had a rotator cuff tear.
My New Britain chart records that I was admitted to that hospital, (and to the IOL and others) with a detailed Psychiatric Advance Directive, the first page of which states that seclusion, 4-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” My PAD also makes several concrete suggestions how better to deal with me when I am upset and in crisis. Even though I spent many hours on this document, Psychiatric Advance Directives are virtually worthless in Connecticut and doctors can and do ignore them freely.
Perhaps because of this, HOCC staff literally forced me (“escorted me”) to seclusion and/or restrained me multiple times. They even had male guards strip me naked “for safety’s sake,” and even though I put up no resistance, they had the same male guards four- point me, separating my limbs into a spread-eagle position – a visual rape they clearly enjoyed — while still naked and shackled me into leather restraint cuffs without even covering me first.
Is it any wonder that what resulted was someone who would wash her hair with her own urine, defecate on the floor of her 24-hour-videotaped bedroom and smear feces on the wall? Yet the esteemed Dr. Balkunas, the director of W-1, the general psychiatry unit at HOCC claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic, so he contends. He simply never got the connection between my later horrendous decompensation and this so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either.
I moved to Vermont shortly after being released from New Britain Hospital. No hospital in Vermont has felt the need to seclude or restrain me in any such fashion. In fact they do not diagnose me as having any personality disorder either. I have now moved from the Central Vermont Medical Center to Meadowview Recovery Residence in Brattleboro, where they offer residential and unmistakably kind, non-coercive treatment for both schizophrenia, and for the PTSD that resulted from this horrific treatment.
My grave concern however is that there are people still being tortured in HOCC’s W-1 unit for General Psychiatry, on Grand Street in New Britain. I did not leave Connecticut just to forget about this. Justice must be served in order for change to happen.
I tried to file a complaint through the ADA with the Department of Justice about HOCC’s ED and their refusal to provide me a means to communicate but I never heard back from them, although it is just possible they called my cell phone which has ceased to function…
I beg of you to respond to this email. Please help, and please do something to change New Britain’s HOCC use of torture, and the situation at W-1 in particular. Although I am somewhat constrained in Vermont at present, I would assist in any fashion I possibly can.
Pamela Spiro Wagner
After burning my face with cigars and cigarettes, in response to command hallucinations, I spent the last month in Connecticut’s well-known Institute of Living (yeah the dangerous 6th month was JANUARY not February but nobody thought to check my math) being beaten up and trussed like a pig in four-point restraints almost daily for many many hours. Why did they deal me this sort of treatment? Why? Because “You do not follow directions”.
I DID NOT FOLLOW DIRECTIONS so they beat me up (despite my policy of non-resistance) and tied me, shackled me with leather and metal cuffs to a bed for dozens upon dozens of hours.! Time after time I had to defecate in my own clothing, because they would not even give me bathroom breaks. Get that? I was disobedient, so they shackled me to a bed as an excuse for treatment!
After this experience, I LOST ALL FAITH in the ability of any institution to do anyone any good who has a mental illness or sickness of the mind, or any emotional disorder or whatever you wish to call it. I GIVE UP! I will kill myself if anyone ever tries to send me back to such a cesspit of a place. I do not care if it is appointed like the Taj Mahal. NO ONE who works there is uncontaminated by the evil infecting such places. I may be the devil but I never wanted to be evil while they are ALL EVIL EVERY SINGLE ONE. I have NEVER been to a hospital where the people are kind and well meaning and where the treatment is actually kind and decent. Once in a while a single person, such as the Middlesex Hospital occupational therapist Christobelle Payne, may stand out in memory as being a rare human being of warmth and dignity and caring, but otherwise, they all to a one fail the test of being decent human specimens and all fail royally to be even normally humanly responsive to suffering persons. They are in it for the money and a cushy job, and don’t you forget it if you go into a psycho hospital, DO not expect to get well there. Expect deadening dulling drugs that never worked and the research tells so, and directions (ie ORDERS) that you HAVE To follow or ELSE.
Get out of there as quickly as possible, because your life depends on it. I am serious. DO NOT LINGER expecting care and treatment or to feel better no matter how helpful you might want it to be.
Furthermore. if you are a young person, do not listen to the sweet seductive advice that some may give you that you woul do well to go for “disability” and social security payments. THAT Is a load of total crapola and the worst thing anyone could tell anyone under the age of 40. Too many young people are being 1) told as children that they have Oppositional Defiant Disorder or ADHD, both of which are adults’ and psychiatrists’ ways of saying, “You don’t as we tell you to huh? Okay, then, we will label you mentally ill in retaliation!” But that is not the worst because they then “medicate” you young children or adolescents with Ritalin or SSRIs and if those cause the anticipated problems of irritability and anger management problems, and outburts and moodswings (!!!), then “add on” atypical antipsychotic drugs (and who would not think to themselves, in momentary awe and self-pity, “OOOh, I must really be Mentally Ill if I take an ANTI-PSYCHOTIC drug, right???”)
The thing is, they will justify these drugs with another label, a label imposed because you now have an IATROGENIC or doctor-induced, medication-caused illness, like some version of “bipolar”, or if they really dislike you, the untreatable Borderline Personality Disorder, which only means largely that you are youngish, female and emotional and angry and don’t shut up when they want you do. (Test: Do they want you in DBT classes? Then you have the BPD diagnosis, trust me. Dialectical behavioral therapy is FOR “borderlines” no matter how hard they argue that it is open all…)
NEITHER of these labels reflect your or anyone else’s REALITY, mind you, they are ONLY labels, and neither Bipolar nor borderline have ever ever been shown to be real bona fide physiological illnesses or even (for all the talk) genetic diseases. What is a “real mental illness” anyway? No one agrees on the diagnosis, in any one person, and no one can find any chemical test or neurotransmitter than it out of balance or even an anatomic difference between the ill and the well. They only have the person’s words and the doctors opinions… If you disagree, prove what you what to argue. Do not tell me, well Manic depression “runs in the family” because that is horseshit. Messiness and not making beds can seem to run in a family, you know why? Because NO ONE breaks the cycle and teaches the kids the value of neatness and making beds every morning. It matter where and how and WITH whom you grow up, and the myths you grow up with matter just as much. The notion that Manic-depression runs in your family is only that. A MYTH. but that doesn’t mean you cannot induce it or see it and make it real in your kids or yourself if you try hard enough.Lord knows teenaged angst these days is frequently dx’d as bipolar so jump on that bandwagon by bringing your child to a psychiatrist and they will be happy to oblige!
But do not think that your label of “Borderline” is something elevated and “nearly psychotic” as if that itself is anything superior to other MIs. Trust me, when someone else calls you Borderline it is shorthand for MANIPULATIVE, DRAMATIC, attention-seeking, devious, lying…if you like those words, go ahead and claim the diagnosis for yourself, but i doubt you will. So why do you vaunt it, and flaunt it? Do you not understand that the hospital and therapists actually hate your guts? Get a hold of your chart and READ IT. it is YOUR right and it might open your eyes to what those people REALLY think of you…It won’t be pretty or nice at all, but it will be instructive, and maybe you won’t want to be Mentally Ill with Borderline Personality Disorder any longer, hey?
Another few words as to young people going for social Security Diabilty: Someone asked me about this and my response is unequivocal. It is the very same trap that Welfare was for young mothers with too many children years ago…It had positives to it, but it ended up trapping many and many generations in poverty of the most extreme sport for, well, generations. Speaking just for myself, IF anyone had had the time to find out where my talents lay, in art and writing, and had been able to provide the community and home supports for me that I truly needed, rather than funding my rent and hospital stays largely, plus a visiting nurses visit to bring me medications. I might have blossomed and never ended up recurrently in the hospital for decades. I mean this from the depths of my broken heart. I was always an extraordinarily talented and intelligent person, and everyone knew it. At the same time, I had very real problems. But no one ever said, LET’S NOT FOCUS ON YOUR PROBLEMS. LET’S SEE HOW FAR YOUR STRENGTHS CAN TAKE YOU!
You know, I still cannot socialize or be away from home for long, and I cannot tolerate any 4- hour work day, far less an 8-hour work day…I do not have ordinary or “normal” stamina in any fashion. Narcolepsy is partly to blame and probably the mental issues and whatever else is at fault, I cannot say. But an extreme lack of stamina that eating well and exercise daily does nothing to help is a FACT of my existence. Nevertheless, I do not believe that I had to stay on Disability and “relief” all my life and be a leech on society…No, i just had no one from the ADA or any social services (god forbid a family member or friend) looking at my individual needs and assessing what I could do to earn a living and helping me, in deep and truly helpful way.,..I believe that my life might have been very different and more productive had the AMERICAN system not dumped me onto antipsychotic drugs and social security and essentially thrown me away…
But it will do it to you too, and you are assenting to it, if you go for disability at at young age. DO NOT DO IT. You will NEVER get free from those checks. NO ONE EVER DOES, unless they marry or get rich some other way…It is the worse decision you will ever make. I know that some living situations demand a check for rent, but don’t assent to their demands, make a radical decision to take charge of your own life, CHALLENGE the psychiatrist’s diagnosis. How long have they known you for anyhow???? Challenge the pills, or at least the dosage. DO YOU FUNCTION BETTER NOW???? that is the only question that matters. If not, the pills do not help. PERIOD. NEVER take any pill on a “For the rest of my life basis!”
Oh, I am so angry and broken at the moment that I cannot speak more. But if I can later on, I will say more to explain. At the moment, I have to attend to too many PHYSICAL bruises and to find a way back to sanity on my own, having been driven to the brink of near extinction by one of the best known hospitals in this state. At the moment I am both rigid with rage and so confused and broken that I scarcely know how to continue, or whether I even want to. Why bother? Why bother? How can people be such monsters, and in such monstrously powerful places and ways. I hurt so deeply and feel I will never trust an single person ever again when they say, “Come let us help you. You need our help.” YOUR help? Like being raped, I need your F—ing help!
GO jump in a lake of snot is what I should say to all of you so called helpers. I’d rather die. Go F— yourself.
THE POEM THAT CAN FORGET BUT NOT FORGIVE
This poem is afraid
because I am afraid.
This poem is always cold,
and shivering, making my teeth clatter
like cheap tin tableware
on a bare plate.
This poem wants to die,
and be rescued too late
to regret it.
This poem has been all its life scared,
and still is: scared, trembling
on the brink, trembling,
knowing the truth that lies
beyond the lies
told over and over,
though it has never been taken in.
This poem has a voice
small, smoke-rasped, hungry,
and it has much to say
about what really happened
when no one else was there
to stand to protest.
This time it wants to be heard.
This poem wants to be heard!
It will spit and curse and claw
out bejesus if it has to,
this poem means to be heard!
This poem will tattle-tale
sit back and smile smugly.
This poem will wring satisfaction’s neck
and revenge will taste like chocolate.
This poem is sad as water, poor as sand.
This poem wants to live well,
but it doesn’t know how.
© Pamela Spiro Wagner, 2009 (from WE MAD CLIMB SHAKY LADDERS, CavanKerry Press, Fort Lee, NJ)
I may have posted this before but it is especially relevant at the moment because i have been mute for more than 6 weeks now and do not know why it has lasted or what to do about it…
Okay so here is another rap lyric. I suggest that you try to play it on an apple or iphone/ipad device as people have said that these won’t play with Internet Explorer. Perhaps because they are created through Garage Band and with ITunes? Anyhow good luck! (This is a TRUE STORY about what happened in the New Britain General Hospital in May 2014, Hospital of Central Connecticut…NOTHING IS IMAGINED OR MADE UP IN fact things were much worse even than this song describes….) If these end up being popular enough, I will redo them with a good microphone and perhaps a video…
DR. MICHAEL E. BALKUNAS, SHRUNKEN-HEAD MUTHAFUCKA RAP
Doctor Balkunas, you think you can fuck with me?
Doctor Balkunas, you think you can punish me?
Doctor Balkunas you head shrunken mofucker
G’wan, have another headfucking think on it, mofo…
They brought me by ambulance, silent and broken
Terrified, mute, and on an “involuntary”
Not even speaking and mentally ill
I could make no choices, every word unspoken.
Do you know what it means when I say I was mute,
when I could not speak and words did not work
and the world was too loud and my head was too full
and there was no bridge and no hand to pull
me out from that in-between. Even security
wasn’t there to protect me, only nurses and from me
and even the first nurse who coldly appraised me
grabbed my one book and then took my phone and fled
as if she were plotting to fuck with my head
because she had only to ask me and take it politely,
and promise to take care of things, and do it nicely.
Such fierce flames of outrage surged in me, and anger!
So not even thinking, I went running after her
wanting just to reach her and grab my book back from her
Little did I know the reaction if I touched her.
Mike Balkunas, you thought you could fuck with me?
Mike Balkunas, you thought you could punish me?
Mike Balkunas, you thought you could shit on me?
Mikey, you mofo, have a new headshrinking think on it.
Quicker than quicker everyone was sicked on me,
from the aides to the orderlies, even the nurses.
Burly armed guards went piling up hard on me,
and the worst of the worst was patients made versus me
a 100-pound 60-year old lady of five foot three
upset that my two last possessions were snatched from me
without any reason or rhyme in the world really
by the usual criminal in the ER, the head RN
who knew I was powerless alone in that warren
of ER rooms, so she had me dragged me to seclusion.
where I had to bare-knuckle the dark in confusion
battling anguish and fear, with the voices’ profusion.
So to get someone to come in and hear my screaming
I pulled all my clothing off, for clothes had no meaning.
Mike Balkunas, you think you can fuck with me?
Mike Balkunas, you think you punish with impunity?
Mike Balkunas, you really think you can shit on me?
G’wan, Mofo, Have another headshrinking think, now, Mikey…
I screamed from the base of my lungs for an hour
but was utterly ignored by all who had power
to relent or release me. I hadn’t a notion
of what else to do, to get help or attention
or have them return to the room, but to start
hitting my head and even tearing apart
things I could throw, chair, clothes and chart.
Then came the goon squad of six beefy men
who easily brought me facedown on the floor again
I screamed and I struggled but it did me no good,
if you fight them they justify all that they would.
Much better to lie still and let them abuse you
and get discharged and hope against hope you can sue.
The ER in peril from the dangers I posed
such a monster as me, poorly muscled, unclothed,
they wanted me, mute, completely shut up.
so they rammed three injectables into my butt.
Mike Balkunas, honey, you thought you could fuck with me?
Mike Balkunas, sweetie, you believed you could punish me?
Mike Balkunas, sweetheart, you thought you could shit on me?
Aw, little boy, Balkie, do your headshrinking mofo thing with it…
Mikey? Mikey? Mofo…I’ll bet you won’t forget me for a lo-o-o-ooong time, will you?
Ha ha ha!
I wish to god I could forget you. You mofo. You mother fucker. Let this rap song be a lesson to you, not to fuck with poets and writers or you’ll get written into a history you might rather be forgotten.
Doctor Michael Balkunas, dare you fuck with me now?
Doctor Michael Balkunas, dare you punish me now?
Doctor Michael Balkunas, you head shrunken muthafucka
Mofo, Mikey go fuck another headshrinker and think on it.
This article is an important OPEN LETTER that I just found at BEYOND MEDS:
The Hearing Voices Movement: In Response to a Father – ‘My Daughter, the Schizophrenic’
January 21, 2013
There was a heart-breaking and disturbing story in this weekend’s Guardian newspaper entitled ‘My Daughter, the Schizophrenic’, (1) which featured edited extracts from a book written by the father of a child called Jani. He describes how Jani is admitted into a psychiatric hospital when she is 5, diagnosed with schizophrenia when she is 6 and by the time she is 7, she has been put on a potent cocktail of psychotropic medications:
”Jani is on three medications: Clozapine, lithium and Thorazine (known in the UK as Largactil). This combination has been the most successful. Are her hallucinations completely gone? No, but as she will tell us, they are not bothering her. It’s like having the TV on in the background, volume turned down, while you’re doing something, and every so often you look up at the screen to see what 400 the cat and other hallucinations are doing. They remain on Jani’s periphery, but she can still function in our common reality.”(2)
This harrowing description exemplifies the worst excesses of responding to a deeply troubled child’s distress as if it were a pathological illness, with the full psychiatric arsenal. What ensues can only be described as an account of psychiatric, human rights abuse.
If only Jani and her family were offered alternative kinds of help such as that developed by Voice Collective, (3) a London-wide project set up to support children and young people who hear, see and sense things others don’t. Voice Collective works with children, young people & families, and with professionals and organisations offering a whole range of services including peer support groups, so young people can meet with other young people with similar experiences, creative workshops, 1-2-1 support around making sense of voices and finding coping strategies, an online support forum. Voice Collective also offers a range of support services to families as well as supporting schools, social services, child and adolescent mental health services and other youth agencies to work with children & young people who have these experiences.
As one parent who has been supported by Voice Collective said:
‘You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”. – (Mother of a 12 year old)
How different things could be for Jani, her family and countless other children and families around the world if there were greater awareness that such humane and healing alternatives exist; approaches which help without doing more harm. (continued below the break)
——————————(Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon Jacqui Dillon’s website: http://www.jacquidillon.org
- January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her, by Michael Schofield, published on 1 February by Hardie Grant Books.
Jani and her family originally appeared on the Oprah show in 2009. Many of us within the Hearing Voices Movement were so saddened and disturbed by Jani’s treatment that we wrote an open letter to Oprah Winfrey. Here is the open letter from INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world, reprinted again.
We are writing in response to your programme about “The 7-Year-Old Schizophrenic”, which concerned Jani, a child who hears voices, which was broadcast on the 6th October 2009. We hope to correct the pessimistic picture offered by the mental health professionals featured in your programme, and in the accompanying article on your website. What upset us most and moved us to write to you, is that parents will have been left with the impression that they are powerless to help their children if they hear voices. We are also concerned that the programme gave the impression that children with voices must be treated with medication. We note that the medications mentioned in your programme all have very serious side effects. (For example, antipsychotics such as Haldol cause neuronal loss, block the dopamine pathways in the brain required to processes rewarding stimuli, and carry a high risk of neurological and metabolic side effects such as Parkinsonianism and diabetes. Their effects on the developing brain are largely unknown and, in our view, they should only be given to children as a treatment as absolutely last resort.)
We have been researching and working with adults and children like Jani for the last twenty years, and our work has led us to very different conclusions from those reached by the mental health professionals on your programme. One of our founding members, Dr. Sandra Escher from the Netherlands, has spent the last fifteen years talking to children who hear voices, and to their parents and carers. This work is the most detailed and thorough investigation of children who hear voices carried out to date [1, 2]. The most important findings from recent research on hearing voices are as follows:
Prevalence of Voice Hearing in Adults and Children
Recent large-scale population (epidemiological) studies have shown that about 4-10 % of the adult population hear voices at some time in their lives [3-5]. Only about a third seek assistance from mental health services. Amongst children, the proportion hearing voices may be even higher  and, again, only a minority are referred for treatment. Hence, it is wrong to assume that voice hearing is always a pathological condition requiring treatment.
Everyone has an inner voice. Psychologists call this phenomenon ‘inner speech’ and it is an important mechanism that we use to regulate our own behaviour (plan what we want to do, direct our own actions). Child psychologists have long understood that this ability begins to develop at about 2-years of age [7, 8]. Hearing voices seems to reflect some kind of differentiation in the mind’s ability to tell the difference between inner speech and the heard speech of other people [9, 10].
Link to Trauma
A common theme in research with both adults and children is the relationship between hearing voices and traumatic experiences. In adults, around 75% begin to hear voices in relationship to a trauma or situations that make them feel powerless [11-13], for example the death of a loved one, divorce, losing a job, failing an exam, or longer lasting traumas such as physical, emotional or sexual abuse. The role of trauma was identified in 85% of the children we have studied, for example being bullied by peers or teachers, or being unable to perform to the required level at school, or being admitted to a hospital because of a physical illness. In short, our research has shown that hearing voices is usually a reaction to a situation or a problem that the child is struggling to cope with.
Voices have a meaning. A related and equally striking finding is that the voices often refer to the problem that troubles the child, but in an elliptical manner. To take just one example from the children studied by Sandra Escher:
The voices told an 8-year-old boy to blind himself. This frightened his mother. But when we discussed whether there was something in the life of the boy he could not face, she understood the voices’ message. The boy could not cope with his parents’ problematic marriage. He did not want to see it.
We wonder whether anyone has attempted to establish why, in Jani’s case, the rat is called “Wednesday”, why the girl is called “24 Hours”, and why is the cat called “400″? What do these mean for her? Why does Jani want people to call her “Blue-Eyed Tree Frog” and “Jani Firefly”?
Good Outcomes Without Treatment
Recently, Sandra Escher conducted a three-year follow up study of eighty children who heard voices, aged between 8 and 19 . Half received mental health care but the other half were not given any specialist care at all. The children were interviewed four times, at yearly intervals. By the end of the research period 60% of the children reported that their voices had disappeared. Very often, this was because the triggering problems were dealt with or because the child’s situation changed – for example, following a change of schools.
Helping Children Who Hear Voices: Advice to Parents
It is important to appreciate that the desire to make voices disappear, although usually the goal of the mental health care services, is not necessarily in the best interests of children. Some children do not want to lose their voices. If children can find within themselves the resources to cope with their voices, they can begin to lead happier and more balanced lives.
The most important element in this process is support from the family. Unfortunately, we have found that mental health services often fail to have a positive effect on children’s voices, because they foster fear rather than coping. However, we have found that referral to a psychotherapist who is prepared to discuss the meaning of voices is often helpful.
It is important that parents do not assume that hearing voices is a terrible disaster but instead regard it as a signal that something is troubling their child. If parents assume that voices are a symptom of an illness, and are afraid of them, the child will naturally pick up on this feeling. This can lead to a self-defeating cycle in which the child becomes fearful and obsessed by the voices.
We would like to offer this 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices:
1. Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.
2. Accept the reality of the voice experience for your child; ask about the voices, how long the child has been hearing them, who or what they are, whether they have names, what they say, etc.
3. Let your child know that many other children hear voices and that usually they go away after a while.
4. Even if the voices do not disappear your child may learn to live in harmony with them.
5. It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.
6. Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on fixing those problems. Think back to when the voices first started. What was happening to your child at the time? Was there anything unusual or stressful occurring?
7. If you think you need outside help, find a therapist who is prepared to accept your child’s experiences and work systematically with him or her to understand and cope better with the voices.
8. Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.
9. Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.
10. Most children who live well with their voices have supportive families who accept the experience as part of who their child is. You can do this too!
In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems. Indeed, the opposite is most probable: children treated in this way will simply become more powerless. Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the treatment Jani receives is the only method available. We fear that this may cause some children to be subjected to an unnecessary lifetime in psychiatric care. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology.
We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his experiences and to discuss with the child, parents and therapists how this was achieved? If there is any way we could help make this happen, please contact us.
We look forward to hearing from you on the issues raised in our letter.
(Letter re-edited with the kind assistance of Professor Richard Bentall)
For the Selected bibliography please see original piece at Mad In America. http://www.madinamerica.com/2013/01/the-hearing-voices-movement-in-response-to-a-father-my-daughter-the-schizophrenic/
Here are the first several comments that followed:
ON NOT SPEAKING
When I went temporarily mute at age sixty,
it sparked no visual wonders.
After decades schooled by dictionaries,
vocabulary categorized the world:
“precipice,” “acrid,” “blanch;”
words even defined my senses.
But one can fall into
speechlessness for reasons
though these may not seem reasonable
to people who believe that only talking things out
or about them makes sense.
Speaking or not, I knew
when silence was less insane
than trying to be heard
by those who would rather hurt me
than pay attention.
But if, as they say, silence is so eloquent,
why couldn’t anyone hear
what I so desperately didn’t say?
This video is pretty sickening and difficult to watch. However it is brief and necessary, if you care about what the police are doing tp everyday citizens in this country… (Need I mention that Eric happens to be African American, which I believe was significant in his treatment, just as a mental illness would have been or other supposedly extraneous factors…
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.
This time you should be able to view this on an Iphone or Ipad.
I am assembling my own private, so to speak, “treatment team” for recovery. This is because it turns out that to go to any facility for real no-drug no medication recovery, somewhere like Windhorse in Northampton, Massachusetts, or Cooper-Riis in NorthCarolina, you have essentially to be filthy rich. Neither place so much as returned my application email (supplication) once they knew I “only” had about — well, let’s just say that I could not afford their fees of up to $20,000 per month, and certainly not for the requisite six month program just to start with! So essentially, you have to be wealthy as Croesus in this country to get any help whatsoever to recover, or you are on your own.
Luckily a little family assistance does permit me to hire a few people to help me — which I know some people are not fortunate enough to do. So I did — I hired an art therapist this past week and I meet with her next thursday! This is something I really look forward to. While I do art daily, I do not usually express my feelings easily or spontaneously doing art. I have to think things through doing art. But i want to do it quickly and find out things or learn to let go and feel my way doing art. And I have never done art therapy, at all so I dunno even what it can offer, except that I cannot believe it won’t be helpful, esp now that I am done to 5mg Abilify as of Saturday. And no abilify at all by the following Saturday, if it turns out that I can tolerate the drop to nothing.
Now, I do take Geodon as well, so I think it will be fine. But we will see. So far so good. But I did say that I would take it more slowly if I ran into problems. Once the Abilify is out of my system, I will wait a little while, then start reducing the Geodon. No sense in waiting too long. If I have no difficulties apparent from the loss of Abilify, why wait? THEY thought i decompensated almost immediately at Yale New Haven Hospital from having “nothing on board.” My contention is that I decompensated due to the abuse I suffered at their hands, and as a result of their megadosing me with IM Haldol, torture for anyone.
That’s about all the news I have for now. And it is getting late so I’d better go to bed.
Oh, by the way, if the pictures look a bit different, it is because they are done with markers, copic markers for the most part, and not with colored pencils….So you are noticing my use of a different medium.
I just was released from the Yale New Haven Psychiatric Hospital and i regret to say that it was far from the kind and gentle “soft place to land” in a crisis that i remembered. Partly this was my fault, for wanting to not take the meds that i already knew would be forced on me, quite despite Dr Milstein’s assurance to my outside psychiatrist that he would never force meds or Zyprexa on me as “it doesnt work.”
No, I did not know that meds would be FORCED on me…Not until Robert Ostroff MD took over my care and made it clear he did not give a damn how I felt. He decided to punish me with massive doses of Haldol when I refused Zyprexa, and I know he is of an age to understand what he was doing. One, he is a Yale Physician, so he knew of the hearings in Congress back in the 70s where the Russian dissidents were complaining of TORTURE by Haldol injection, and where Congress actually decreed that the drug was in fact an instrument of torture when use on Russian citizens…He KNEW what he was doing to me, PUNISHING me. He just had the power to do it and could. So he did. He NEVER saw me to talk to me, NOT once. No, he just oversaw torture, and while Robert Milstein, MD (basically a good guy, if deluded into believing that psych meds are good for people) was supposedly on vacation, he too was available and did nothing to stop this. For that I do not forgive him…Or, I forgive him, but will never trust him to treat me again. No, I will never go back there.
In fact, I’m here to say that no hospital psychiatrist can be trusted when they promise not to force you to take drugs…that is what they are paid to do and are largely paid to believe in. It did me little good to try NOT to sound like i was ranting and raving esp when attempting to persuade either doctor or social worker in hospital to read Robert Whitaker’s ANATOMY OF AN EPIDEMIC or even borrow my copy of his MAD IN AMERICA, both books i find life and mind changing in a major way, even a year after i started reading them for the first time.
I dunno what to do though, in terms of meds. I function fine in between times in hospital, mostly. And so are the Abilify and Geodon helping or simply not Not preventing a relapse when it comes? There is reason to think that Geodon may be damaging my heart, slowly but surely. My EKG said something Dr Milstein refused to explain about a “probable infarct” but was that me, my heart or some general info on the EKG sheet? I wasnt allowed to look at it long enough and NO ONE answered my questions about it. Probably fearing i would stop taking the offending medication, which was true and i did anyway so they ought to have talked to me honestly.
But honesty is not a general policy in brutal psychiatric units where they restrain you, holding you down and bruise you to give you injections of Stat meds that are really ordered only because someone with the power to order them got angry and resentful…
I cannot sugarcoat my own demeanor during this stay. I was not a pleasant patient to anyone most of the time. And at the worst times i was likely considered horrendous. I screamed daily at the top of my lungs, i resisted their treatments physically and violently, i defecated on the floor of my room and even put handsful of shit across the walls, and apparently i even threw a cup of coffee at someone…though i do not remember doing this and the report may have been distorted by second hand information about me, coming back to me. But i was a horrible patient and one aide even called me, every chance he got, a dog, a pig, a swine….in covert secret ways, audible and openly but when no one else was around to hear him except the other aide who would back up his story that it never happened.
On the other hand, there were a few kind and compassionate understanding people who did not throw my smearing shit in my face or even take my calling them horrible names (bestowed on my vocabulary by a former friend who called me them) personally.
I need to enlist just such people for private duty help for the next relapse, if it should happen…but how? Ads on hospital cafeteria walls? How to vet the sign-uppers, so i do not get attendants that will abuse me in my own home? How to trust, and when, what they or references tell me? So many references are positive and therefore lies that they are tantamount to useless unless secretly negative!
Decisions decisions….must be made well before anyone is needed to help me at home….one to one, constant observation-plus!
Well, i am still recuperating, and worried about deep hip pain though seemingly improving is scary, reminding me of the avascular necrosis bout i had about five years ago. Was it meds induced? possibly because it healed magically in a month post radiographic dx, with a stay in psych hospital and change in those meds. But if i dont withdraw abruptly from, say, topamax or geodon, but slowly, will the hip pain continue, or evolve into worse than just, say, pain, but real bone destruction ans disability? Can i take any risks at all at age 60 with drugs that have no proven track record research wise, and seem to help me but may only being doing harm?
|New art is at bottom, way below.
Okay, first of all, below is much more like the checklist that I brought to Dr Mary B O’Malley, and we debated it line by line. Which I will do again, revealing her “proof” of my postiive diagnosis, just to show you how tortuous was her forcing me onto that Procrustean bed of such an absurd diagnosis. If she didn’t have to chop off my feet to make me fit, she would have had to stretch me on the rack to lengthen me! But read below and after I will give you a taste of her “reasoning” as well as the story about what happened subsequently. As my dear friend Tim says, “it ain’t pretty…” The checklist so to speak is in the second paragraph.
“The essential feature of Borderline Personality Disorder is a pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity that begins by early adulthood and is present in a variety of contexts. Individuals with Borderline Personality Disorder make frantic efforts to avoid real or imagined abandonment (Criterion 1). The perception of impending separation or rejection, or the loss of external structure, can lead to profound changes in self-image, affect, cognition, and behavior. These individuals are very sensitive to environmental circumstances. They experience intense abandonment fears and inappropriate anger even when faced with a realistic time-limited separation or when there are unavoidable changes in plans (e.g., sudden despair in reaction to a clinician’s announcing the end of the hour; panic or fury when someone important to them is just a few minutes late or must cancel an appointment). They may believe that this “abandonment” implies they are “bad.” These abandonment fears are related to an intolerance of being alone and a need to have other people with them. Their frantic efforts to avoid abandonment may include impulsive actions such as self-mutilating or suicidal behaviors, which are described separately in Criterion 5.
BPD is manifested by a pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
You got it? Okay, so as I understand it, I am supposed to #1, primarily and first of all, to FEAR ABANDONMENT and try by hook or by crook to avoid it. Everything I do is supposed to be aimed at not letting people abandon me or to mitigate the chances of it happening or of my feeling the pain of it, right? That’s what Dr Mary Burroughs O’Malley tried to get me to believe was true about me when she pointed out that I actually cried, omg, when my friend of 25 years was dying…that I “feared abandonment”. ( Yeah, you better believe I am stating her name right out loud, and Dr Amy Taylor at Donelly 2 South at Hartford Hospital’s Institute of Living as well, as she is the latest in a long list of deliberate torturers…)
Holy shit, you fucker, you dare to tell me that my shedding tears at the thought of losing a longtime friend, a friend who was my surrogate mother when my own parents were not in the picture for 30 years, is a symptom of a a personality disorder? You miserable little piece of pond scum…But you did. You insisted that my tears of simple grief were fears of abandonment.
Never the less, that was not proof of anything, because it never showed that I ever in any fashion behaved in such a fashion as to “avoid real or imagined abandonment.” And you know why you could not adduce any proof of that, Dr O? Because you could not find any. There was none. I simply never tried to avoid abandonment. I was abandoned, yes, by my father, one, for 35 years, but I never protested or tried by any extraordinary means, except letters, to ask for him to come back…And I was abandoned by unprofessional psychiatrists…But I took that in stride, frankly. Since I recognized that if they behaved that way then I would not want to be their patients any longer in any event.
Did I ever try to keep a session going longer than the set time? Never. I was punctual about getting up, immediately at the end of the “hour” and you know it. It would have horrified me to overstay into someone else’s hour! And I feel like such a burden on the world that the notion of overstaying or needing anyone simply horrifies me completely. So why would I want to keep anyone, or place any unnecessary demands on anyone? YOU were the one with the short temper and the curt voice…You were the one who would tell me to call you on your cell phone and then be unpredictable about it. YOU were the one who would tell me I had an appointment and then sometimes not even be there when I came…and I took it in stride.
YOU abused me. And I took it in stride, as if I deserved it. And Felt that I did. Because you taught me that I did and I knew nothing better. You continued to treat me like an subhuman less- than-adult right up until the day I left you…
But let me go on to criterion number 2. Splitting. Extremes of Valuation and devaluation. I am on the fence about this, because I believe that NO BODY can tell me that we do not ALL do this to some extent when we get angry with a person. The point is to know how a person feels and thinks when she calms down. Knowing how a person acts and thinks in a hospital is NO WAY to judge how a personality is in “real life” and it is simply silly and Dangerous to judge on a legal medical record something a fundamental as a personality disorder by behavior seen in a hospital setting. MOST ESPECIALLY in someone being treated, as I always was, for a psychotic disorder. YOU KNEW This is frowned on. It is considered unethical and actually regarded as improper and impossible, to diagnosis a personality disorder in a person with an axis I diagnosis….SO WHY DID YOU DO IT? WHY????
I know why, because you were a coward and could not stand up to nurses that you wanted to have like you. You could not simply telll them to treat me decently and with respect and dignity,. to understand that I was not myself and that I was not in control of myself…NO instead you threw me to the wolves and colluded with them in treating me as if I were wholly in control and able to make rational decisions about how I behaved, when you knew absolutely and without a doubt that this was NEVER the case. You knew it, because we discussed it many times, and you knew me outside of the hospital to be an entirely different person.
I have one intense and upsetting relationship, with an intense and very possessive borderline friend, who I needed to get rid of then and for a long time. SHE is borderline, not me. ALL my other friends have been friends for a long time. MAny are long distance friends — so much for the fear of abandonment…I don’t care how far away they move. They are still my friends and we stay in touch!
Dr Mary B O’Malley didn’t want to discuss identity, she jumped on the criterion on impulsivity and actually seized on the one about, you got it, self-mutilation. She seemed gleeful as she pounced. Smiling. I looked at her. Shook my head, but said nothing. She knew perfectly well that I didn’t fit their clinical picture, not for BPD, since I only self mutilate because of command hallucinations and when psychotic, and never in order to compel others to do something…But she was so triumphant when she made her point that I understood who had the power of the pen and diagnosis and that she evidently had forgotten what she had told me back in 2003 (this was in 2006): ie that the staff had asked her to add to the schizophrenia diagnosis for their convenience, not because she had suggested it or even felt it was true.
Apparently cognitive dissonance, if I use the term correctly, her behaving towards me as if I had BPD, and restraining me and telling others that I had BPD, had so affected her that now she had to make her thoughts correspond with her actions…and she was doing so, and dotting even i and crossing every T in the effort. But that didn’t make it true, that never made it less of a lie. It simply made it crazy making and infuriating.
It was then that I realized, though it took me a few more years to do it, that I had to leave her. If I had this conversation with her in 2006 or 2007, we put together the poetry book in 2007 and it was published in 2009, by which time I was already gone from her practice, and she had left the area as well (the week after I announced that I was leaving her, she announced that she was leaving me….NOW WHO HAS ABANDONMENT ISSUES???)
The other “criteria” for BPD here I will ignore, as they fit PTSD acute, as well, and frankly are absurdly vague. Anyone who has been restrained repeatedly in the hospital and kept in seclusion for a good three weeks, can be excused for exhibiting erratic moods and behavior!
Anyhow, I want to continue with how Dr May B O’Malley’s change in my diagnosis in 2003 affected my treatment in other hospitals. (You can likely guess, but there are details I would like to share, with names and other identifying tidbits added) but it is late and I needs must do it another day. Thanks for your patience in listening to this. My heart is —- Hmmm. Thanks to Inderal, a beta blocker that I now take for migraine prevention, I think my heart is NOT racing, that the panic I feel is a subjective feeling not a true palpitating reality after all…Interesting!