All art copyright of Pamela Spiro Wagner
All art copyright of Pamela Spiro Wagner
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.
Patients placed in Seclusion or Restraints are to be debriefed afterwards. To see standards of care, see below this reprint article.
I moved to Brattleboro Vermont on February 4, 2015, leaving my home state of Connecticut where I’ve lived for nearly 60 years. l had to move because of the horrific psychiatric abuses I experienced in Connecticut hospitals and my fear that if ever I were hospitalized again I would be killed.
I feel guilty, however, just getting out without accomplishing something to stop what continues to happen in Connecticut psychiatric units and hospitals.
The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to immobilize a patient to a bed – or being isolated by force in an often freezing seclusion cell is almost universally terrifying. Nevertheless, both cell and/or restraints are routinely 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 restraints multiple times in the spring of 2014, despite a diagnosis of chronic paranoid schizophrenia, as well as PTSD that was triggered by precisely this sort of thing.
Bizarrely, the hospital psychiatrist, Dr Michael E Balkunas, treating me at HOCC challenged my PTSD diagnosis. “Patient misperceives her treatment as traumatic,” he wrote in my chart. Well, maybe so, but I don’t know how I can be accused of misperceiving three entire days callously abandoned alone, tied to the four posts of a metal bedstead at U-Conn’s Dempsey Hospital (for trying to escape the locked unit) as anything but brutality, even if it was in the 1990s. I also think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while tied to a bed 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 misperceived being grabbed and held face-down and nearly suffocated numerous times by staff at Yale Psychiatric Hospital in August 2013, who injected 10-20 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic misperception” on my part? Maybe, and 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, four-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” It also makes several concrete suggestions how better to deal with me when I am upset. Even though I spent many hours on this document, Psychiatric Advance Directives have no legal clout 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 again and again. They took to stripping me “for safety’s sake,” and even though I put up no resistance, they had the male guards spread-eagle my limbs while still naked and put restraint cuffs on without even covering me.
Is it any wonder that what resulted was someone who would wash her hair in her own urine, defecate on the floor of her room and smear feces on the wall? Yet 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. He simply never got the connection between my horrendous decompensation and his 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.
These are the NURSING De-Briefing standards for after restraints and/or seclusion:
DEBRIEFING AFTER RESTRAINTS/SECLUSION
Standard: As soon as possible, following the release from seclusion or restraint, the nurse, the person and others as appropriate should participate in a debriefing.
– See more at: http://www.apna.org/i4a/pages/index.cfm?pageid=3730#Release
Intent: A debriefing is done with persons who have been secluded or placed in restraints to:
NONE of this was EVER done, ANYWHERE, in any hospital I have ever been in. Why? Because they all knew perfectly well what they had done to me and WHY…Not because I was dangerous to anyone, but as punishment…Naturally they did not want me to have a chance to tell anyone.
– See more at: http://www.apna.org/i4a/pages/index.cfm?pageid=3730#Release
NOTE: THIS may be Dr Michael E Balkunas’s forgotten relative, also apparently an MD or he plays one on TV, I dunno! All I know is that the men look amazingly alike! They could be cousins like the twins on that Patty Duke show many many eons ago…What is important to remember is that they DO share a certain number of aberrant genes, and I believe that one of theirs leads to sadism…
(Note that My GOOGLE Review (edited) follows)
In May 2014, Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, angered by my rejection of him because I could not speak (he refused me the use of any writing materials) decided to diagnose me with Borderline Personality Disorder despite having asked for in-put from my family and my outside psychiatrists who all stated that no such BPD or any PD symptoms ever existed. He did this despite my having been admitted with a decades-long Axis 1 diagnosis of paranoid schizophrenia (and with PTSD since 2009 due to hospital brutality and abuses).
I believe he added the PD diagnosis in order to justify the implementation of an inhumane Behavioral Treatment Plan which resulted in four-point mechanical restraints and the use of a horrific and freezing seclusion cell. As my Advance Directive stated clearly, even at the time, none of these modes of “treatment” in the past ever led to anything but disaster.
At HOCC I was repeatedly secluded and even restrained, naked in a spread-eagle position, in 4-point leather cuffs for many hours, yet never was this because of any behavior indicating “imminent danger of causing serious bodily harm to self or others” as the Centers for Medicare and Medicaid require. They did this to me always and only because I was too loud, or because I disrupted the unit “milieu.”
Before I was double-locked into one of W-1’s soundproof isolation cells, the nurses might have the male security guards strip me naked “for safety’s sake.” No matter how compliant I was, they always injected me with three “punishment drugs.” Even when I said I would take them orally or offered my arm, they could choose to push me onto my face on a bare mattress, forcibly hold me down until I couldn’t breathe, and administered them in my buttocks.
I informed the guards about CMS rules regarding appropriate uses of seclusion. To their credit they seemed taken aback, but in the end they were always willing to follow orders and to inflict pain in order to ensure my rapid compliance.
Dr. Balkunas insisted again and again on the diagnosis of BPD yet he never treated me with any modality but antipsychotic drugs and never wrote about my exhibiting any BPD symptoms in his notes. In fact his whole stated rationale for starting commitment procedures to the Connecticut Valley State Hospital was that “antipsychotic drugs take time to work.”
The staff of Nurses and Mental Health Technicians at New Britain General Hospital W-1 and most certainly Dr. Michael Edward Balkunas, Adult Psychiatry Unit Chief, must to be re-educated about the evils of employing punishment or torture in mental health care. They should be given, in addition, many hours of intensive in-service training on trauma-informed treatment. But frankly, as a penalty for the extraordinary and sadistic abuses they long inflicted (knowingly with impunity) upon the mentally ill taken into their care, they deserve nothing less than to summarily lose their jobs and their licenses to practice — for good.
I have been asked, by The Recall Center http://www.recallcenter.com, see also http://www.recallcenter.com/xarelto/side-effects/ to “talk about my medications” so here I am, talking about my “favorite psychotropic drug, NOT..”: Abilify.
Why do I take Abilify?
I take Abilify, well, why do I take Abilify? I was prescribed Abilify because of the diagnosis of schizophrenia many years ago, and I usually take it along with another anti-psychotic drug (Geodon). But frankly the reason that I, I myself, take Abilify for now has nothing to do with psychosis or schizophrenia. I take Abilify simply and only because I have this weird feeling that it helps me write and do art. Ever since I have been taking it, or the two drugs together, I have had no trouble doing art at any time or even writing when I want to. The extra plus is that I can finish longer term projects, ones that I start on one day and have to finish over time. In the past this was a problem, but it seems to not be so difficult for me any more. I do not know for certain whether this is due to the effects of the Abilify/Geodon combination, but it feels like it, since I was never capable of finishing projects so easily and reliably before then. On the other hand, I believe that I can do these things myself now, and that once I get used to living here, in my new state of Vermont, I will choose to sloooowly go off the medications for good.
How do I remember to take my medicine?
In truth, I often forget to take my medications, but for the past thirteen years I had a Visiting Nurse come to remind me. And now that I live in another state, where this service is not available, I have a med tray that is delivered weekly. I hope that I will be able, by seeing this tray openly on display on my table, to remember to take the ones I want. At least for as long as I want to take them.
I have been asked about side effects of this drug, but I would say, 1) all “side effects” of drugs are the effects of the drug, and you cannot tell a person that she is only suffering “side effects” especially if they are serious enough to cause distress. 2) there are very serious and troubling effects possible with Abilify, so my experience is not necessarily typical 3) I used to feel very irritable on Abilify, but no longer 4) usually I add Geodon to help me sleep and calm the anxiety that Abilify can induce
Where do I go for Medical support? I just a few weeks ago moved to Vermont, so I do not yet have a Primary Care Provider, but I do have a psychiatric nurse practitioner who will see me – so far, at any rate – once a month. For medical issues, at this time, I do not know whom I will see, but in Connecticut I used to have an APRN at a doctor’s office. I also was able to get to an Urgent Care center easily, in CT. That is not possible here in rural VT. So in the event of a medical emergency, I do not know exactly what I would do, except call 911 and hope for the best!
Before taking Abilify, or ANY anti-psychotic drug, here are the questions that I think you should ask your doctors: You should ask, first of all, why he or she is prescribing an anti-psychotic medication for you. Does he or she believe you are psychotic? If not, why prescribe such a powerful and possibly devastating drug? And if so, why? Doctors should be willing to answer this openly and honestly and if they will not, then I do not believe that you should listen to their advice, but get a second opinion. You never know who might derive financial gains from prescribing a medication that is not available generically. Also, why is your doctor not being honest with you? I would never feel comfortable in a situation like that…
Ask your doctor what to expect after taking this drug and when to expect the effects, good or bad. What does he or she anticipate you will experience as a benefit and what he or she thinks you might experience on the down side? Ask them to be honest about this and why they feel it is worth the cost/benefit ratio to you.
Abilify is extremely expensive and non-generic until 2015, when a generic form is scheduled to become available. So if you can, I would ask your doctors about why they are prescribing this particular drug and not another. There may be very good reasons for it, such as a low incidence of weight gain, and little sedation, at least at doses below 15mg. Nevertheless, I would want to be certain that there were no financial inducements such as stock holdings in the pharmaceutical company involved etc.
There are ALWAYS risks involved when you take pscho-active medications, or any drug, but anti-psychotic drugs can be especially problematic for some people. Even though Abilify causes fewer problems with massive weight gain, for many people this is not always the case and weight gain as well as Type 2 diabetes, with or without weight increase has been known to occur on Abilify. Over-activation and irritability have been reported frequently, in my experience. And many people I know who have taken Abilify have told me that they have trouble sleeping if they take it at night.
Published research suggests that 30mg of Abilify is no more “effective” than 15mg. From my own experience, I can only say that at 15 mg Abilify is quite activating but at 20-30mg it becomes suddenly sedating and less helpful. This is why so many people refer to Abilify dosing as “Less is more.” They mean in some sense that the lower doses work better than the higher ones, unless the sole goal is sedation, in which case I would say there are better drugs for that purpose and safer ones.
As for drug interactions, I am not aware of any important ones.
Finally, the three main things I wish I knew before taking Abilify are what I wish I’d known before I took ANY anti-psychotic drug many years ago: that if I took what they gave me, and kept taking it, 1) I might be disabled for the rest of my life 2) it might induce chronic/episodic psychosis – i.e. stop the natural process of recovery in its tracks 3) NOT that my brain’s neurochemistry was already “out of balance” but that my brain and its neurochemistry would be changed and destabilized by the drug itself…
That is what I wish I knew before taking Abilify. Before I take any drug from now on, I will find out these things and determine for myself whether the cost/benefit ratio really makes sense.
But on the whole I would say that NO DRUG developed in the last 20 years has been adequately or honestly researched for any pharma company to make a claim about either its efficacy or its safety. NONE. So I would on that basis probably never take a new drug from now on. There is not a drug company out there that I trust to have done ANY new brain research, since it’s all based on junk and garbage theories that arose from “back researching” Thorazine, which was bogus in the first place. So why would I want to take a drug that was developed from research coming out of that cesspit?
I am 62 years old. I am NOT suicidal and I certainly do not want MDs with murder on their brains to euthanize me with their psycho-drugs, or to use me as some guinea pig to determine how much control they can have over people…NO MORE DRUGs, NO MORE DOCTORS, NO MORE HOSPITALS AND HOSPITAL ABUSES.
I may take a couple of drugs today in order to survive the transition from CT to VT, but you must understand that my brain was already damaged from the years of having been given them against my will. So I HAVE AN ALREADY DAMAGED BRAIN, from the medications I’ve already taken.
I do not advise anyone with a more or less intact brain to take an anti-psychotic drug, not ever, not if you can avoid it and certainly not for “the rest of your life.” NEVER take any drug on an ongoing, “forever” basis. ALWAYS re-evaluate your need for it.
And that is all I am going to say about Abilify. If you take Abilify for “depression” you have come to the wrong place. Nevertheless, I have written a blog post just for you. Do a search on “Add Abilify” and you should find it. But you won’t like it any more than this one. Sorry about that.
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…
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 is a larger size painting than I am used to doing. I usually draw and I am scared of painting. When I have painted I have usually restricted myself to tiny sizes or just portraits. This is my first attempt at a real crowd scene or any scene at all. (I am tempted to redo the foreground doctor, to make him less cartoonish and more realistic, but for now, I will keep him as originally done. However, I don’t like the illustration quality of this painting, and want to learn how to be more painterly, so to speak!)
Actually I “deserved” four-point restraints. I was “violent.”
But I want to explain what “deserving” restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut) means in 2014.
I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion and restraints when essential, when a patient is absolutely out of control and extremely violent, and cannot be controlled in any other way.”
Trust me, I know, because they have said this to me.
But what you need to know is that they are NOT talking about some 300 pound man hopped up on PCP, waving a machete. For one thing, that person, whom I believe to be largely mythical at least in ordinary psych units, or if real now largely confined to correctional and law enforcement settings, the person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I.
And let me tell you about me. I will turn 62 years of age in November. I am 5 feet 3 inches tall, weigh, maybe 110 pounds on a good day, and have been consistently described as “poorly muscled.” I am also unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the HOCC nurses/security guards knew and used to their advantage when subduing me. I also want you to know that I am a decades-long vegetarian on the principle of non-violence — to people as well as to animals. I have opposed the death penalty since I was a nine year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted “criminals” the way we do now.
Yet in every single hospital I have been in since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either physically holding me down by brute force, one person to each limb and one to my torso (this was at the only 2 hospitals that did not actually resort to mechanical four-point restraints– compared to the dozen others that did), they would routinely inject me with one to three drugs as chemical restraints.
I am the rule, not the exception to it, of their supposedly “extremely violent mental patient” who is so OOC — out of control — that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical example of the person they claim they absolutely must have the right to resort to violence against, for their own safety and mine.
Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, in the Emergency Department, this is what happened, and I kid you not: I came in by ambulance, involuntarily, in the sense that I did not want to go but was brought in by EMTs and given the “either the easy way or the hard way” choice by police. But I did not resist it or fight. I was not restrained in the ambulance. in fact, I was mute and merely handed them my med sheet and my detailed Advanced Directive, on the first 2 pages of which is the important information about my trauma history and the critical need to know points about how to deal with me.
When I arrived I was quickly shunted to the psychiatric crisis section and into a curtained off cubicle. No one took my cell phone from me, or the single book of my artwork that I had managed to bring with me. So I texted everyone I could for as long as I could. For a while I tried to obtain a crayon to communicate with, eventually and in desperation, writing with ketchup on the outer carton of my dinner container, begging for something to write with. Instead of helping me out, the head ER nurse penned me a note saying that I would not get anything to write with, that either I spoke out loud or she would not listen to me. How very odd and evil that she wrote this to me! She didn’t speak to me, she wrote it, as if I were deaf, even while saying that she knew I could speak and would not talk with me unless I did so… The idiocy of that act just sends sparks of rage through my brain even now. She later spied my art book next to me on the gurney, and suddenly rushed me, snatched it out from under my thigh and raced away with it, holding it triumphantly as if she had won a prize. I was incensed. Why hadn’t she just asked me for it? And how did I know what she was going to do with it? Would she keep it safe and sound? Actually, though, I mostly just reacted instinctively: Someone had stolen the only thing I had of my own in my possession, and she had simply snatched it away from me, without a word or even a polite request. So I did as anyone would do, I think. I raced up behind her and snatched it back! Well, that was a mistake. That was bad, that was bad bad bad. I heard people groan and swear. I was grabbed from behind by two security guards and the book was wrenched from me again.
Remember, I was mute so I couldn’t say anything, but I tried to resist, tried to gesture that the book was mine and she had no right too take it from me. Instead of explaining that she would protect it and take care of my things, people started talking about how I had attacked the nurse, had assaulted her…She told them to put me in seclusion. The guards dragged me, resisting in panic, towards this hidden room, and I heard another nurse warn them of my medical history with a torn left rotator cuff. Hearing this, the guard on my left side, grabbed my shoulder and wrenched it higher until I let out a blood curdling scream, wordless but vocal. “Aha! I thought you could make sounds!” he said in triumph, wrenching me again until I sobbed in agony. Then they dumped me in the seclusion room, with only a hospital johnnie on me, and locked the door behind them.
Even though I had no words to speak my rage and panic, I screamed and screamed. They came through the door with needles, held me down and injected me. Then, when in a rage reaction, I disrobed, they decided to four-point restrain me. I heard a guard say, “we really have no reason to restrain her, you know.” But the other said, “It doesn’t matter, we will find a reason.” So they did . Terrified, I did not resist, because they held me down by the left shoulder causing me so much pain I was afraid they would hurt me permanently. I also hoped upon hope that if I didn’t resist, they would let me out quickly. Believe me, I had been through this routine enough to know what to try to do to minimize the consequences and the damage…
Fast forward to my being sent to the psych unit, about which I no longer had any choice, being labelled violent now and OOC as well as mute and schizophrenic (I hate that word but they used it). When the doctor who admitted me, Dr. Michael Balkunas, came to see me the next day, I was still mute. He asked me how I was and I gestured my need for a writing implement to answer his questions. He coldly told me that he would not speak with me if I would not talk out loud. Then he got up and walked out the door, with nothing more to say. I was by then so upset and outraged that I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder. This was not intentional, not that I recall, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ER on his orders, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal. Enraged, his face beet-red, he bellowed at the nurses to order guards to force me into “Seclusion! Seclusion! Restraints! Restraints!”
Before I could do anything or even assent to walk there, I was bodily dragged down the hall by my injured shoulder, to one of the most horrifying seclusion suites I have ever seen. A set of two cells, each lockable from the outside, completely barren and cold except for a concrete bed set into the concrete wall, with a plastic mattress on it. Nothing else. No commode, no bed pan, nothing but two obvious cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door a room away, so I was thoroughly alone and soundproofed from the rest of the unit, and walked away. I panicked immediately, and urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Not a word. I did not even understand at that time that there was an intercom they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I KNEW what would happen, I knew this because it was SOP. But I was freezing in there, with the A/C on full bore and at 110 pounds and a history of frost bite I cannot tolerate being cold. I also had NO inkling as to how long they would keep me there, one hour or sixteen. All I knew was that I could not tolerate the isolation, one, and I would not survive the freezing temperature, two.
So I took the urine-wet johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it as if to strangle myself. It was useless of course, because I couldn’t keep pulling it without letting go and then I would breathe. And I didn’t want to die, I just wanted it to LOOK as if I were strangling myself so someone would come in and I could explain that I was COLD! Well, finally the intercom crackled to life and someone said, “Pamela, take that away from your neck now.” I gestured something that clearly indicated, “I’m freezing cold!” The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but in clear gestures, “I need something warm to wear!” Well, this was a battle I was destined to lose, of course. And eventually but not so quickly as to indicate that they were seriously concerned about my safety, guards and nurses entered the room, along with a gurney, and they did as they had threatened, injuring me in the process. They grabbed me and hoisted me onto the gurney and locked me into leather restraint cuffs, in a painful and illegal spread-eagle position, despite my groans of pain and protest, then they refused even to cover me with a blanket. Someone threw a small towel over my lower torso and that was all. They they positioned an aide at the door and trooped out. I screamed my lungs out, and gestured my desperate need for water and warmth, but the aide simply ignored me, saying she wasn’t permitted to talk to me, and couldn’t get me what I needed. That was how violent I was. And that is how the most violent patients are treated and why they MUST be restrained, for their own safety and the safety of others…Right? NOT! ALL the other times I was secluded it was because i was disturbing the peace of the unit. I was loud and complaining, or simply “agitated” because i walked the halls too much.
That was it. That is the rule not the exception, and if you read my posts about my incarceration at the Hartford Hospital Institute of Living in the winter of 2013 you will get a similar picture. I am not the 300 pound crazed man on PCP wielding a weapon, no, I am a small, elderly woman who is non-compliant with the unit milieu and wants only to be warm…that is about it. But each and every hospital claimed that I had to be restrained, that they had NO alternative, that I was so violent that they had no choice, even though it often took only one or two people to do so, because I didn’t resist or say a word, just lay there while they pinioned me to the bed. Now you tell me that restraints and seclusion are necessary ‘modalities of treatment” that cannot be done away with because they might be needed in an emergency. Emergency schmergency. I am that emergency and they were and are NEVER needed, EVER.
CLICK ON THE PICTURES TO ENLARGE THEM.
There were few rewards for behavior that toed the line at New Britain General Hospital (HOCC). Mostly it was punishment. If I was found with even a stub of a forbidden pencil, I was carried off to the Supermax seclusion cell, stripped naked and left alone.
At that point, being teeth-chatteringly blue with cold, I would swat a nurse in such a way that she would feel assaulted and bring on the goon squad of “I want to hurt someone today” guards to put me in four point restraints.
Why would I induce this? Because then they would at least cover me up afterwards with the mercy of a sheet, for modesty not warmth mind you, and I would beg for a blanket in vain. But at least my body would be protected from head to toe from the blasts of the A/C up full bore, and I could rest after I had had screamed out my lungs and my despair for a lonely twenty minutes or more.
No one cared, no one heard or paid any attention. The doors were double, and the cell was utterly soundproof. NO one ever even knew I was locked in there. When my screaming was too heart-wrenching for the softer ones of the staff down the hall in the room where they had retired to, they simply turned down the monitor and intercom so they didn’t have to listen.
I know, because I heard when the telephone rang, telling the person sitting outside the inner door they could turn it back on now (after I had quieted down). This was brutality of the nth degree. But they always called it treatment for safety, though I mentioned the CMS regs to the security guards one day as they were inflicting their usual pain in order to bring me to the room, and they stopped in their tracks.
“You’re kidding,” one said, “Its true that the only legal reason for seclusion is Imminent Danger to self or others?” (I had been brought there for disturbing the peace…)
I nodded, Look it up. She looked gravely at the others. but proceeded o do what she had been ordered to do anyway. And I proceeded to behave in a wildly immodest and terrified fashion likewise…knowing I would be left alone and freezing for at least two to three hours, no matter how fast I calmed myself.
They didn’t care. it was PROTOCOL…
1)Intense fear of abandonment, real or imaginary.
I do not fear abandonment. Many friends have passed through my life on their ways to distant ports of call in their lives’s journeys and I have always said, Well that is fine, we will simply continue to be friends on paper. I love letter writing and these days,what with email and skyping it is easier than ever to stay in touch. I still have a friend I met at folk dancing in 1972 who lives in Arizona, and we still talk occasionally and even meet every ten years or so. The thing is, we still consider ourselves friends. When my surrogate mother Lynn Levine died, I admit I cried, it was a very sad day and we had grown closer than ever over the two years of her dying. I was sad that she was gone, but not fearful that she was abandoning me. (Dr Mary B O’Malley, in her insane need to brand me with the BPD diagnosis, before she removed it altogether in a letter to Dr Angela, unbeknownst to me, insisted angrily to me in a session that my tears were symptomatic, right then and there of my “intense fear of abandonment.” Rather than understandable grief than a lovely woman had stood in for my own mother during the years when she, my mother, had largely abandoned me due to my real mental illness of schizophrenia. (About this Dr Mary B O’Malley said nothing, zilch…Why say anything about a real abandonment that i had handled as well as anyone could?)
Having intense relationships with lots of conflict, and seeing the other person as “all-good” or “all bad.”
I have one friend who has dominated me for many years, and she may indeed have borderline personality disorder and suffers from it greatly. She demands that I not have other friends, despite the fact that I have many. And she bad mouths the ones Ido. She wants my narcolepsy drugs because they are stimulants and she believes these drugs are the only things in the world that make her “happy” but in fact NOTHING makes her happy. With all my other friends — my 60 birthday party was filled with 16 good personal friends who came to celebrate, not boyfriends and wives to fill in the space, but just my own friends. And they loved each other, though they had rarely met. I do not have conflict with any of my friends, and they would be appalled to have anyone insist that our relationships were filled with such extremes. They all tell me they love me dearly and that the biggest problem is that I do not love myself.
If the below is true about BPD, count me out. I do not feel empty. I feel too full of ideas of things to do and think about. I feel sad about the environment and the world, which I feel is dying due to humanity;s lack of caring and concern. But I definitely do not feel EMPTY. Hardly. I wake each morning feeling ready to start the day and having much to do and excited to do it.
The behaviors in this next paragraph mean NOTHING to me. I hav never done anything impulsive, except when driven to flinging shit in hospitals, because of their extreme trauma behavior. Engaging in impulsive “pain management” behaviors, such as going on spending sprees, having promiscuous sex, driving recklessly, abusing drugs or alcohol, binge eating, breaking the law, threatening suicide or making attempts, and engaging in self-harm — NONE have ever occurred to me. (When I harm myself it is exclusively in response to voices i hear telling me to do so, or when I hear people telling me to that I mistake for real people instead of understanding they are the voices.
I take Topomax, a seizure control drug, for a SEIZURE disorder and NOT for a mood disorder, despite what Michael Balkunas wrote on my discharge summary. I have never taken a seizure drug for mood stabilization. ONLY for temporal lobe epilepsy.
I have indeed been date raped under very unfortunate situations three times in my 20s when I was extremely innocent and did not understand that I had a right to be rescued by the security guards who asked me, and had any right to say No.
I have also been extremely traumatized and abused by caregivers and major people in my life whom I trusted and gave myself into their care. I should not have,. They were therapists and doctors. but I did not know better and suffered greatly. Now, I suffer under the ministrations of abusive doctors like Michael Balkunas who reads my PAD and decides to abrogate every single part of it because he KNOWS ME BETTER THAN I KNOW MYSELF.
To his dismay, I became loud and combative and fought his “help” every step of the way. So to take revenge, he added the BPD to my diagnosis. But it is a lie. He knows nothing about me, no more than any other abusive in hospital doctor who have read what Mary O Malley Md PhD wrote in her discharge summaries when she was playing the nurses’ game at Norwalk Hospital and decided to let them treat me, who did not, even in her opinion, have BPD, with extreme behavioral protocols and seclusion and restraints. and dismissive ignoring of everything I said. Even today it resounds in my care. I feel it, I know it. Nothing is fair because of what she did, but she got a way with it…and I cannot litigate what she did more than a decade ago, lethal or nearly lethal though it was. But some day I will write her a letter and let her know the consequences of her actions.I do not believe she will care. People like her do not have consciences. Not even the Rev Dr Mary B O’Malley. She got away with it, She even wrote Dr Angela a letter denying it. But I have the records, I know she was lying, or trying to color things in a different way.
Thank god I am out of HOCC, and I hope that the blog post about Michael Balkunas has had some success at reaching them on the unit, I hope he and Jessica have had a chance to read it. Dismiss it though they certainly will, I want them to read it! Fuck them, I have something to say and they need to know what that is.
I understand now why Dr. Michael E. Balkunas, the psychiatrist at New Britain General Hospital (Hospital of Central Connecticut) W-1, general psychiatry, gave up on me. He decided, even after eliciting my brother’s opinion both from a professional and a personal standpoint, and Dr Angela’s equally professional opinion that I do not suffer from Borderline Personality Disorder, to diagnosis me secondarily as exhibiting that disorder.
Oh, he knew I had come in with an acute exacerbation of schizophrenia and that I had PTSD. He knew that I had in my electronic medical record documents stating from other psychiatrists that I do not and never did have any personality disorder, despite in-hospital “behaviors.” But I know why Dr Balkunas diagnosed one. He did it for the same reason the other hospitalist psychiatrists have done it in the past: 1) in order to justify the use of a Behavioral “Treatment” Plan that was tantamount to torture and 2) to excuse his liberal use of seclusion and restraints in instances when they went against all CMS regulatory guidelines. And 3) in order to dismiss me and call my behaviors “manipulative and devious” instead of taking me and what I said seriously.
I also suspect, for all the second shift RN Barbara’s telling me that Michael Balkunas MD is a caring man and “never gives up on a patient” that he DID in fact give up on me. In fact I suspect that he never really tried to deal with or treat me at all, that from the first time he resorted to seclusion and restraints, he knew he had opted to terminate any treatment alliance.
But how did I figure this out? Well, it isn’t as if there ever had been any kind of alliance between us. From the first day after he admitted me from the ER, when he came into my room while I was still mute, he just walked away, saying dismissively, “I won’t talk with you unless you speak.” Immediately I understood that this man was willing to jeopardize everything about me and about my treatment in order to assert his power.
The same thing came into play after I began speaking about a week later. Now the issue was that he would not speak to me, would not deal with me at all but would immediately leave the room if I became angry and spoke with anything resembling a raised voice. (Argh, this was so many shades of Amy Taylor MD at the Institute of Living last year! — and Dr Balkunas tortured me in similar ways with predictable ineffectiveness — but powerful people behave in predictable ways, right? It seems I must have threatened their sense of entitlement. Why else take it out on me? Who am I? I’m a big fat nobody! They could have ignored me or just treated and released me, like anyone else. But instead they did their damnedest to crush me and destroy me. Why? Because in the end, I think I must have triggered some underlying feelings of resentment and impotence in these two psychiatrists and you know you do not threaten to unearth the feelings of a psychiatrist, or at least not with Michael Balkunas MD or with Amy Taylor MD …)
I learned very quickly, but not quickly enough, that everything about the Hospital of Central Connecticut W-1 Unit at New Britain was about coercion and control. Not about trauma-informed, patient-centered care. I don’t know how other patients managed to be discharged from there within a few days, but it would never have been possible for me. Mostly because I was simply too out of control to BE controlled by people who used such methods to undermine any possible calm and stability I might have achieved in those early days. They did NOTHING to help me but take away the very coping methods and objects that might have helped me. They used the carrot-and-stick method liberally, but mostly they used sticks. The very fact that the ED staff had seen fit to seclude me, give me IM meds twice and also to four-point restrain me naked to a bed tells you something about the brutality that reigns supreme there.
You know the very first thing I did was give the ER and the W1 staff a Psychiatric Advanced Directive. It was supposed to help them to help me. But instead they seemed to resent my knowing myself, and wanting them to know how to help me. They reacted badly and worked against it in every way possible, instead helping me. It appeared to anger them that I knew myself, and instead of using it, they did everything in their power to abrogate each and every section of it, right up to the section where it asked them to notify my doctor and my brother when and if they used seclusion and/or restraints despite the warnings.
No one ever called anyone in each instance that they chose to restrain or seclude me, even though I begged them to verbally at the time as well, and this document, which was at the front of my chart all along, stated in no uncertain terms that I wanted both people to be notified.
It was the worst hospitalization I have ever had, and I say that having had many serious and difficult stays. I was not just a difficult patient, I was a pain in the ass, but this was a direct result of the trauma I experienced in the ED and immediately following it on the floor. If I had not been traumatized, on the unit and in the ED, I feel certain that my “behavior,” outrageous, “disgusting,” and out of control as it was, would never have been so damaged. But because everyone saw fit to go against everything advised in the PAD, and do everything they could to re-traumatize me– even after I had a conversation with a nurse about my three experiences with date rape, even after that, she decided to seclude me, involving the forcible removal of me from my room by brute guards who bodily threw me into a cell without any mean s of communication with the world — because of this, they got the regression and degeneration and worsening of symptoms that my PAD predicted would happen. What did they expect? That I would simply thank them?!
I realized, though, the Monday morning of the week he discharged me when he came into my room and asked me how I was doing, that Dr Balkunas, who “never gave up on a patient,” had given up on me. Now, my brother had indicated to him that the “kindness” Dr Balkunas was offering to me by means of involuntary commitment to CVH would be devastating and destructive to the max. I think “Balkie” had had to think about the wisdom of actually sending me there. So he also had to think about whether he actually had any tools at all to “fix me” or cure me as he had promised. Indeed he was no miracle worker and had never held out anything, NOTHING AT ALL, by way or therapy or treatment modalities beside commitment to the state hospital to help me…so without that threat he had nothing to offer me.
The man never once sat down and even talked to me calmly and caringly. I say this because when he sallied forth with his usual opening that Monday morning, How are you? (I had decided finally, with my brother’s encouragement to “play the game.”) I answered with the socially acceptable, “fake” answer, my game plan, not expecting any real psychiatrist worth his salt to accept it, but trying to “play the game” anyway, as I was desperate to be discharged. My answer?
“I’m fine, thank you. How are you?”
Balkunas really didn’t bat an eyelash, the completely social answer was good enough for him, because he had given up trying to help me. Indeed, he had never even tried. So he proceeded, “How are you eating?”
“How are you sleeping?”
“Well, if things continue this way and there are no meltdowns I think you can go home on Friday.”
There were indeed meltdowns, even the night before I was discharged I had a meltdown over my supper tray. But Dr B was not on the floor much and didn’t hear of those, and everyone was so sick of me that they didn’t write them up, knowing I was to go home. And I persisted in answering those three magic questions “correctly.” Socially, as I had been taught, against my will, years ago. He never asked me a single other thing, and never talked about anything else at all after that.
The day of discharge came, and the great and caring Dr. Michael Balkunas popped his head into the room. “How are you?”
“I’m fine thank you. How are you?”
“Okay, I will write your discharge papers now.”
The very minute he said that and turned to leave, I put my sunglasses back on, as I saw that taking them off a week prior had served its purpose and it mattered not whether I wore them from that point on or not. I still wear them today, to protect people from my evil…
Dr. Michael Balkunas may talk a great game about helping people but he has very few tools to do so and really it is all pretence. He has medications, which are by and large bogus (though he has been educated by Big Pharma for so long he fails to understand this), and he had commitment proceedings to the state hospital, unless he happens upon a millionaire family willing to spend on their family member. I was not one of those, nor worth it. CVH – for those who are not in the know, CVH—Connecticut Valley Hospital is the last state hospital and the only long term facility for adults on Medicaid in Connecticut – being sent there would have killed me and he and my brother both knew it.
The difference was that my bother was decent enough to care while Balkunas honestly thought it would be good for me to lose my life there. And that was his treatment? Bullshit. He was a bad doctor and despite the cant, he gave up on me to boot. Well, thank god he did.
But you know, I do not forgive his accepting my social “I am fine thank you. How are you” so easily. That was insulting. He was sick of me, and considered me willfully manipulative and devious, otherwise he would not have diagnosed me with the damning BPD diagnosis, which in his hospital means just that you are a PIA, no less and no more. But he might have at least pretended to be a psychiatrist and not just a social buddy. How are you? Fine thank you, How are you? What sort of answer is that? ON the other hand, if he had asked me, what could I have said? We both know I had to get out of there and there was nowhere to go but home. He was not interested in finding out how I was, in talking to me. Not from the first. All he wanted was to medicate me. Which he did. So fuck me. How are you, I am fine thank you how are you? And it wouldn’t have made a rat’s ass worth of difference if I had not been okay, which I wasn’t, so long as I said I was fine, thank you, how are you’
Like I said, it was a game. That was the name of it, Play the Game…
So fuck Michael Balkunas. He is worthless to me, and his add-on personality disorder diagnosis means less than a fig to me. He knew I had schizophrenia and PTSD. He knew the hospital was abusing me. He knows nothing about me, never spent more than 3 minutes with me on any given day. He knows nothing. And I don’t give a flying femtogram about HOCC (the former New Britain General Hospital) except insofar as they ought to ask me back to educate them and improve the situation vis a vis their abusive use of seclusion and restraints, not trauma-informed patient-centered care at all. However since even supposedly trained Nurse Manager Jessica came around to not objecting, and approving their use, I can see that it might be hopeless to do so. Willing though I would be.
Barbara, RN on the second shift. You alone were a lifesaver and a light in a dark tunnel. I wrote in the scraps of paper I called a journal of your kindnesses again and again, and I forgive your being blind to the cruelty of seclusion and restraints, because you have lived with that culture too long, You just need to be re-educated. But you saved my life. Had you not been on duty that weekend before I was discharged, I might not have calmed enough to say to Dr. Balkunas the socially acceptable “I-am-fine-thank-you-how-are- you” mantra that was the magic ticket out of there.
I know no one on W-1 remembers me with anything but relief that I am gone and a great deal of disgust and anger. Ditto for me. I still wake screaming from nightmares about the place and a great deal of anger that I don’t want to let go of. I want to hold onto it long enough to fix the situation of W1, before I forgive anyone. Then we will see.
But for now I am off to Vermont for six weeks to stay with relatives. I hope to heal. I hope I can heal…
Take care of yourself Barbara. You would do well to find a kinder and better place to work and train. I thank YOU for everything. I mean it when I say you saved my life and sanity.
Blessings on you alone, Barbara, the rest of you can FYandGTH.
April 16, 2014
Dear Harold Schwartz, Director of the Institute of Living at Hartford Hospital
I believe that I was profoundly harmed by the treatment I received in 2013 on Donnelly 2 South at the Institute of Living at Hartford Hospital, and that what the staff did to me was not only unethical and cruel but that it crossed the line into illegality from the very first. Psychiatric patient abuse is a pattern in Connecticut hospitals, but it was most egregious at the Institute of Living because the staff told me that they knew what they were doing was wrong but that they would get away with it anyway.
That I know I was a difficult patient never justified staff behavior towards me. I was loud and upset and hard for them to deal with, yes. That is precisely why my Psychiatric Advance Directive (PAD) was written out the way it was, and why I made my medical and psychiatric history online so available. When ill, I am frightened and paranoid, which makes me easily roused to irritability and hostility. I know this, from a distance as it were. But knowing this now does not mean I was in control of my emotions. I am by nature neither temperamental nor prone to temper eruptions or throwing things. In addition, I am extremely modest, hardly one to disrobe or urinate in public. My friends and family have at times variously labeled me “stoic” and “peacemaker,” which should tell you a lot. But that I disrobed and urinated on the floor on Donnelly 2 South both horrifies me and concerns me because these behaviors point to something going on distinct from my psychosis: they point to my having been subject to abuse and trauma at the hospital itself.
Let me make it very clear that if I have behaved in such ways before it was only in response to similar extreme circumstances – as when i was subjected over and over to restraints and seclusion in a horrific and sadistic fashion at Manchester Hospital in 2009 and similarly at Middlesex Hospital in 2010. It is too bad that when Sanjay Banerjee MD and Amy Taylor MD took it upon themselves to violate my HIPAA privacy rights and investigate my previous admissions, without my permission (which I expressly refused to grant) they failed to make the connection between the abuse, and my subsequent behaviors…It turns out all they drew as a conclusion was that if those hospitals could use restraints and seclusion ad libitum, so could they. It didn’t seem to matter to Dr Taylor in particular that in 2009 and 2010 measures such as seclusion and restraints not only didn’t work, they made things worse. Not surprisingly, when Dr Taylor followed these examples I regressed completely, just as my PAD predicted.
I was admitted to Donnelly 2 South, and I came in with a very detailed Psychiatric Advanced Directive as I said. I made it very clear that my online electronic medical record was also available. It included documents such as my narcolepsy diagnostic consult and special documentation assessing my need for a higher than usual dosage of Ritalin, written by my former sleep specialist, Mary B O’Malley, MD PHD who was also my psychiatrist from 2000-2009. Included as well was a letter she wrote to my present psychiatrist, Dr Angela Cappiello, explicitly stating her conviction that I do not have a personality disorder, NOS, borderline traits, or otherwise.
According to Dr. Sanjay Banerjee he read every page of these documents. That is what he told me. He even praised me, saying he wished every patient would come so prepared. Moreover, when he spoke with Dr. Cappiello, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, Philip Spiro, MD, himself a psychiatrist, brought up the same matter when in discussion with Laurie Denenberg, LCSW, but her response was much the same: “Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such a document.”
If this was so, then how did it come to pass that Amy Taylor, MD wrote on my history and discharge summary that I have a “long history of Borderline personality disorder” and herself diagnosed “Personality disorder NOS with borderline traits”? I was being treated for four weeks for an active psychotic disorder Axis 1. In any event, she could have no way of knowing whether or not I had a personality disorder, given an active an Axis I diagnosis.
On or around February 4, 2013, I walked in frustration away from the quiet room where I had been held captive for nearly three weeks, strolled down the hall, looked out the window and slowly retraced my steps back to the quiet room, which I had been expressly told was NOT a seclusion room (the definition at Hartford Hospital’s Institute of Living of a seclusion room is a “room to which the door is locked.”) But when I arrived I was confronted by a cohort of staff who proceeded to 4-point restrain me to the bed, even though I was quiet and put up no resistance. Not wanting to give them any reason or justification, I passively lay down on the bed and placed my own limbs out for the restraint cuffs, saying, (I quote my journal entry made later that evening): “For shame. You ought to be ashamed of yourselves. I am not and never was a danger to myself or others.” Their response was “ You refuse to follow directions so we do not know what you will do. This is not punishment, Pamela, this is what your behavior brings on every time.”
From that point on, the threshold for restraints was extremely low. They always restrained me, spread-eagled, so tightly I couldn’t move a muscle. They never permitted bathroom breaks or even used a bedpan, instead they made me defecate in my clothing. They never even let my hands free to eat. I would fall asleep rapidly after three routine punishment needles in the buttocks: Haldol, Ativan and Benadryl—whether I just had my regular meds or not, and they would invent reasons to maintain me in restraints even after I had been asleep for hours. When I woke, groggy and hardly dangerous to anyone, they would grill me with questions that I could not answer. They would then use my inability to respond as reason not to let me out, even when I asked, as the chart recorded, in a “soft sedated voice” for release. They would re-inject me, to put me back to sleep instead.
In the evening on Jan 5th, for the second time that day, they brutally restrained me for throwing half a graham cracker at the wall. Then, as usual, they left me like that for six hours, even after I fell asleep. But in point of fact, though, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. I had never done anything to earn my way into them in the first place. I was never violent until they threatened me. They refused to release me until I literally cried, “Uncle” when they told me to.
As to those vaunted “shows of force” what did they expect? Presented with a cohort of threatening staff personnel I saw one thing: an impending assault. I know they anticipated my panic; they said as much in my chart. Isn’t that the point of a planned “show of force” – to induce fear and panic? Why else do it? So why should it be any surprise, when I defended myself when they forcibly, physically grabbed me? When they stuffed me into a body bag and were trying to tighten the straps, surely you can understand why anyone would bite the hand of an attacker whose digits came near the face. I had done nothing but refuse to enter the body bag willingly. I simply was passive. I did not fight or resist until they grabbed my body and assaulted me.
But none of it should have happened. My Advanced Directive explained in exquisite detail exactly what to do and what I respond to better than fear tactics and force. In fact, It is beyond me, knowing that one of the admission diagnoses I came in with was PTSD, how anyone could possibly approve in advance, permission to use restraints and seclusion “just in case they are needed”. Why not counsel the person asking for this advance “right to restrain” to do all in his power not to restrain me and to work with the PAD instead?
Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:
“Studies suggest that restraints and seclusion can be harmful and is often re-traumatizing for an individual who has suffered previous trauma…
“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.
“Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors that staff members are attempting to control or eliminate.
I have been traumatized, and not just by hospitals. I was date-raped three times in my twenties and experienced traumatic domestic abuse by a long-term roommate. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without serious consequences: regression and serious worsening of symptoms. Unfortunately, as soon as the staff saw fit to use physical methods of coercion and control on me from the first time a staff member grabbed me and pushed me with his lower torso, I ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate?
Staff violence begets violence….
I tried to get help even when on the unit, at least I tried when I was free to, to make calls or leave my seclusion… that is to say, forced three -week-long stay in the quiet room last winter. I made many calls to the hospital’s patient advocate office, but the sole time anyone made contact was when the advocate came to hand me some paperwork – I believe I was actually in 4-point restraints at the time — papers I could not read about the forced medication hearing. I needed her advocacy, but she never responded to my panicked calls in any way that was helpful to me. I wanted her help, but she never came by to ask me what I needed. She was less than useful, the fact that I had to go through her, essentially a hospital employee, and her refusal to respond, contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr. Sanjay Banerjee attempted to force ECT on me, without any prior discussion of it with me whatsoever.
And where did the ECT discussion come from? My PAD states in no uncertain terms that I will refuse ECT under any and every circumstance. My brother would be my conservator if Banerjee had sought to go down that road, and he would never have made any decision to counter my wishes on that subject. If Banerjee really read my PAD, he would have known that. I have already had FORCED ECT and it traumatized me terribly. Also it failed to work.
Banerjee had stopped my 75mg of the antidepressant Zoloft during the first or second week I was there. “Do you really need that?” he had asked, “You don’t seem depressed to me.” Obedient, and in any event glad to get off any medication at any time, I shook my head, assenting to the change. A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal of the anti-seizure medication, Lamictal, a drug I had not taken in 6 months. Now he was applying to force me to take ECT, something I was terrified of, and to have calculated brain damageIt was this threat, and the brutality with which the decision was handed down, that started the downhill course of my IOL stay.
The very next weekday, all hell broke loose. When I entered the conference room, I pushed some important notes across the table that I wanted Dr Banerjee and Laurie Dennenberg to read. They refused, claiming that I threw the papers at them. Instead, Dr Banerjee proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.”
I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.
It could have ended there. I could have been left alone, to cool down and calm myself. But, no, Dr Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, i.e. physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was not hurting anyone or even threatening anyone or myself with harm. All that I had done, in terms of physical threats, was to throw a lightweight chair at the wall. And that, it was clear to everyone, was intended not as a threat to anyone. Furthermore, it was done and over with. I had left that area and gone to my room. I had then come back and now sat on the chair by the phone, speaking to my interlocutor on the other end. There was no need to pick a fight or encourage a struggle. A wait-and-see policy could have successfully guided the situation to a better resolution not only for the situation at hand but for the entire hospital stay. As the poem by Dylan Thomas goes: “After the first death, there is other.” Once they decided to use four—point restraints, there was no going back. The first time broke everything, So they used them again, and again, and more and more freely and without justification but for convenience and punishment.
Back to Feb 5 or 6, after sleeping for six hours, I was taken out of restraints conveniently just in time for a visit from Dr. Angela Cappiello, my outside psychiatrist. Observed by my 1:1 monitor, I only dared whisper and dared not tell the doctor the full extent of the abuse that had been happening. Nevertheless, she took one look at Amy Taylor MD’s behavioral treatment plan posted on my wall, and told me that it would be impossible for anyone, even someone who was well, to follow it properly. She was so worried about me, and about my ability to complete the treatment plan’s requirements, even for the required “24 hours,” that she intervened. The next day, the single day that Dr. Taylor planned to be out of town, Dr. Cappiello asked Dr. Mehendru to evaluate me for discharge, telling her that she feared a power struggle had been set up that I could never win.
When Dr. Mehendru came to see me, at first I was angry, as the chart indicates, thinking she was just another Taylor flunky, preparing to use more restraints and seclusion, But when she asked if I would like to go home, I took one look at her, saw sincerity in her eyes, and burst into a smile, ready to say yes to anything. Miraculously “cured,” I left the IOL that very same day, less than 12 hours after being released from 4-point restraints and not 4 hours out of seclusion.
However, I was not well. Within two weeks time, I was back in the hospital, this time admitted to Yale New Haven Psychiatric Hospital, via their emergency room. Over the next 3 weeks I experienced an entirely different kind of care. At Yale I did not find a staff ready to fight or try to seclude or restrain me.
I was still the same person with the same problems, loud and angry at times, even “violent” to property in my frustration, and still psychotic, yet they never responded with a show of force. Why would they? At Yale it would be absolutely anathema to deliberately frighten a patient. What would be the purpose in that, they would think. They also never pushed me into a seclusion room or strapped me down in punitive 4-point restraints, or any of the other ill-advised responses that my PAD explains are the worst things to do to anyone who is struggling, scared and paranoid. In point of fact, Yale Psychiatric Hospital’s Washington Square unit does not have a seclusion room. They also have a “restraints-free” policy, so they didn’t use those at all either.
The Institute of Living on the other hand with its “We only use restraints and seclusion if we have to” policy, restrained me countless times, and for many more hours than was even legal. When I woke up that last morning, the room opposite me was occupied by yet another person in 4-point restraints! That is because once you allow staff to use restraints a little, it only takes a little to use them a lot. And once you sanction the use of restraints and seclusion at all, it is only time before someone abuses them and abuse becomes the norm.
I would like your response to this letter, I have sent it to many people within the state government and outside of it, But you may have the first response. Also you may be interested in the youtube video of my artwork which can be found at this site:
Prior to when you allowed the staff to body bag and restrain me, when I had done nothing wrong but leave the non seclusion quiet room, and you refused to come to my assistance, you had asked to see my artwork. Instead you left me to be tortured. Well, here is some of the art you might have seen had you rescued me from my abusers.:
Pamela Spiro Wagner
The final one you never saw in featured in the post below this one.
I spent more than three weeks at Yale’s psychiatric hospital in August being tortured, if not by seclusion and mechanical restraints (my PAD restricted the use of those and at least at Yale they listened) then being held down by armed security guards (only their guns removed) and injected innumerable times with a multi-injection cocktail of drugs: Haldol 10mg, Ativan 2mg, and Benadryl 50mg, despite my objections that I have a paradoxical reaction to the last one. They said I could not refuse because I would have side effects to the Haldol without it. Understand this please: They deliberately injected me with a large enough dose of Haldol (without any basis to know I needed any more than the usual 5mg or even 2mg) as to knowingly cause side effects, side effects they knew in advance would be so distressing as to not allow me to refuse medication for them before they even happened!
What sort of dastardly drug is this that it hurts as much as it “helps”? Ah, yes, let me remind you, lest you have forgotten, that Haldol is the medication political dissidents in the 1970s were given in the Soviet Union to subdue them after they were diagnosed conveniently with “sluggish schizophrenia,” an illness “everyone” in the West “knew” didn’t exist except in the Soviet political playbook, designed solely for the dissidents. The American Congress, Democrats and Republicans alike objected then vehemently to Soviet treatment measures, calling Haldol injections the dissidents were given nothing less than “torture.” None of the members of congress ever mentioned the widespread use of Haldol in American mental hospitals, though, for that wasn’t torture, was it? “Those people” – American “schizophrenics” need Haldol, they were told by establishment psychiatry, “they aren’t like you or me and don’t feel the same way when they take it…”
Now, I ask you, how can a drug torture one group of human beings but be a decent and humane treatment for another group? Answer: It cannot. Haldol IS torture, pure and simple, for nearly everyone who takes it. Just ask people! You cannot label one group tortured by a drug and the other “humanely treated” who endure the exact same effects. In truth the only group of humans who like Haldol are hospital personnel, who no doubt appreciate the fact that it in fact it does subdue patients into docility…usually. This means they have less work to do and thus they consider it an effective “treatment.” (Alas, in my case, I confess I was more likely to respond to forcible Haldol injections by stripping naked, defecating on the floor and smearing feces on the wall as by becoming more pliant or compliant. Why they managed not to see the resultant worsening of my symptoms and do something about it I do not know but they persisted in “treating me” and made things worse and worse…Indeed, I screamed more each day than not, for most of the three weeks-plus that I was at Yale New Haven Psychiatric Hospital this past August. So how good a “treatment” was Haldol? Aside from causing me exquisite mental and physical torture, I mean? In point of fact, despite megadoses, no injection made me more compliant, made me into a “nicer,” better patient, and easier to handle. The Haldol, even when probated and regularly forced upon me, didn’t work to their purposes…I was an impossible patient for most of the three-plus weeks I was there, Haldol notwithstanding. So what was the point? And why couldn’t ANYONE see that they were making things worse?
However, that is over with, and what I want now is to tell you that things are going to change, and change radically. I may not have your support in all of it, or any of it, perhaps, but I an attaching the video below as a link because the book it is related to was deeply influential both on what I wanted and did not get at Yale, and on what and why I am doing what I am doing now. The book, as I have mentioned before is Anatomy of an Epidemic, and the video gives a good hour long summary of it. It is a good place to start if you have difficulty reading a whole book on the subject or simply would like an idea of what you are getting into.
But first of all, the video doesn’t tell you this, “Mad In America” does — Robert Whitaker’s earlier book on the treatment abuses of the mentally ill in America — the foxes are guarding the chicken house. What I mean by this is: the Big doctors, by and large the influential ones who affect how our doctors treat us, are in cahoots with the Big Pharma drug companies in developing and promoting drugs that never worked and basically never had a chance to “work” because they were pushed into production and sales before any real research was done.
Maybe you don’t know this but listen: Thorazine was never a real “anti-psychotic” drug. It was a tranquilizer, a major tranquilizer. That’s what they used to more honestly call it. It calmed and tranquilized patients so they were more amenable to hospital treatment or the lack thereof. This was good for all, because the fact that patients were quieter meant that the nurses and aides got to show their kinder, nicer, nursier nursing sides to these “sick” patients, and the “drugged up” patients stopped fighting and finally appreciated being taken care of. It seemed a better situation for all, all ‘round, at least in the big state hospitals where megadoses of Thorazine were routinely handed out to “chill” patient populations into complacency. Less violent/resistant patients meant that the nursing staff could act a bit more like their job descriptors.
But now, suddenly, because someone was calling Thorazine an “anti-psychotic” drug as a marketing ploy, as if it treated the actual psychosis itself, they began to believe that it did something “anti-psychotic,” which in fact it never did. Not really. Not if you asked anyone who was treated with it. It never really helped anyone’s core symptoms. It just dulled you so profoundly you didn’t give a damn, or worse, it made you so mad with akathisia that you forgot how crazy the voices could make you feel, because you were literally wild with internal restlessness and other “antipsychotic” side effects and you had to pace all day or rock in your chair or do other “really crazy-looking shit” the doctors told you was just a part of your illness. Once Thorazine was thought of as a treatment drug, rather than as a behavioral modification drug, it changed the game altogether. It changed everyone’s thinking about schizophrenia (and by extension all mental illnesses) in a way that seems to have altered the course of American history itself. Certainly it changed American psycho-active drug-manufacturing for good, though I can only wonder at those involved with the actual design of drugs and how they can do what they do, surely being aware on some level that what they do has no foundation in science whatsoever. Let alone in honest research…
What am I talking about? Well, if Thorazine, which was originally used for anesthesia, was really just a behavioral modification drug, really, honestly and truly, and did not, if truth be told, treat or remediate any so-called schizophrenia symptom, then what the hell was all this dopamine hypothesis and research all about in the first and the last place? Because any supposed honest research started with Thorazine’s mode of action on the neuron’s dopamine 2 receptors. Supposedly, said those brilliant researchers, looking to explain how chlorpromazine/Thorazine “treated” schizophrenia symptoms so effectively, the drug works by blocking D2 receptors on the post synaptic neuron (Don’t worry if you don’t know what I am talking about…just keep reading).
The point is, Thorazine and dopamine have been inextricably linked for and to the next four decades of schizophrenia research, and all subsequent drug development stemmed from that link. Once that connection had been made, ridiculous and wrong as it was (schizophrenia and dopamine being related, or even correlated, simply was never shown), the stage was set for the “revolution” in brain illness research that has brought us such travesties as “bipolar infants” as young as 2 years old, and the H-Bomb-mushrooming of ADHD cases that threaten themselves to cluster-bomb into more bipolar disability cases than the country can conceive enough SSDI for…And thence to such further travesties as doctors using a brutally potent “atypical” “antipsychotic” (which is in truth no more “antipsychotic” in action than thorazine) like Zyprexa for “off-label” uses like anxiety disorders. Why? For fear of using benzodiazepines, perhaps, but just as often in conjunction with those drugs from hell. Drugs like Ativan and Xanax and Klonopin that are prescribed for people with “major mental illnesses” and the walking wounded as well, both like water, prescriptions that cause devastation in their wake and much more anxiety than they resolve.
It seems to me that for every MD who knows never to prescribe a benzo for anything but occasional use and refuses to, there are 40 who say, “take this three times a day and don’t call me unless you have problems”…expecting no calls.
But I am side-tracked a bit. Or have never quite gotten to my subject, which as you know is me, my own “illness” and my own future. I do not know frankly what was done to me in the past vis a vis these drugs, that is, what was caused by what. As my good friend Josephine says everyone now says, It is what it is and you can’t change it…So I am me, with whatever I am or have. But at the same time, i cannot continue to accept the premise that medications are the only and best way to treat me.
After all, I take meds every day and you all know that I have ended up in brutalizing hospitals regularly, quite despite this. I was hospitalized just this past August, in fact and this past winter too…So what good has been my taking meds, including 2, not just one but two atypical antipsychotic drugs, if they do not work to keep me out of the hospital? Not much, I venture to say. Not much…
Well, but…If they have enabled me to do art and write poetry (when I did that) then they were very good drugs for me indeed. For that is my fear: That I can only do art or write, even if just in my journal, when I take these medications. If so, those would be two very good reasons for me to feel it necessary to keep taking them. I cannot live without something worthwhile to do, and I have no family, no children, no purpose, no career, nothing else but art and writing to live for…
That said, what is the proof that my medications are what make me ME? That they make me write and do art? Essentially and absolutely? None at all. And there is much suspicion that the meds can do harm both in the short and long-term. Nothing at all is known about what happens when people take these drugs for decades. I am not sure I want or need to be that particular guinea pig. Now, “Dr Angela” is, as you may or may not know, a psychoanalyst as well as a psychiatrist, so I told her that I wanted essentially what Joanne Greenberg’s “Hannah Green” got from “Dr Fried” (in reality it was Frieda Fromm-Reichmann, the renowned psychoanalyst who successfully treated Greenberg’s schizophrenia) in I Never Promised You A Rose Garden…No promises, perhaps, no rose gardens, but at least the opportunity for cure, recovery, and an end to treatment. And NO MORE MEDICATIONS, WHICH WOULD TIE ME TO HER PERMANENTLY more or less.
I am off the first drug, Zoloft, and have been for more than a month. But it is not easy. I am bone-weary and feel like crying every day. Feel like I have never NOT been tired, never not fought off hopelessness and the feeling that if I were told I had leukemia I would cheer, “Finally! Thank god it’s over!”. That’s the truth, people. I sit in my chair, the same one I sleep in, and I sit in it virtually all day long. And though I am not addicted and do not need to (most of you know how easily I quit smoking when I need or want to) I occasionally smoke a cigarette just to ease the pain…which is physical as much as it is mental and emotional. I may not seem depressed to those of you when you see me, because I rarely “let them see me sweat” and would never burden you with me if I can help myself. But there is also the fact that if and when I see you, just that fact cheers me, lifts my spirits, thank god, and is a rescue and a blessing, so thank you for that much! The nights are hard, but sometimes the days are harder…Nevertheless, Dr Angela has agreed NOT to speak to me of going back to the Zoloft, not unless I ask for it, because she understands that I want to tough it out, and that i believe that antidepressant drugs cause more depression than they cure. I believe if this is a relapse it is solely or largely because I started taking Zoloft again in 2007, when forced to at Mt Sinai, even though I told them I was grieving Lynn L’s death and because of Joe C’s illness and they ought to let me grieve! If I had been taken off it promptly, or never put on it, maybe I would not be such an easy prey to despondency now.
Nevertheless I am going to go on the record of the past predicting the future, and NOT take Zoloft (as of now) and “get through this somehow…” because despite everything, I haven’t died yet, not of despair, and while i have done a lot of damage to my body, I have managed NOT to kill myself so far…Chances are, then, that I will not. Of course the future is unknown, but all I can say is that I do not want Zoloft or any AD drug at this moment, and can take the pain.
I have cut down on the Topamax, to 200mg but because of recurrent migraines need to keep that where it is for now. The next drug to go will be Abilify. I would rather we stop the Geodon next, but I do not think I can tolerate taking Abilify sans Geodon — not without being incredibly irritable — whereas Geodon without Abilify basically does nothing for me. A steady reduction, not too slow, but not so rapid I cannot tolerate any symptoms that develop. The whole point, in the end, is that should I develop symptoms (and that is not a certainty) we are supposed to be able to deal with them in therapy and not go running to the hospital or back to some drug.
(Okay, this is the point in the argument where even I start getting nervous. But I am determined to do this…I want it, I want it, and I need to try it ONCE in my life before I die. I need to know what I know, what I can know about what I need and do not need in terms of psychoactive medication, if that is even possible… Some much depends on placebo effects you know, and on influences of that sort that I wonder if any of it can be sorted out, and how much is going to be sheer determination?)
Oy, it is getting late, or I would continue. But I need to sleep and so do you. I am certain there is much more I ought to have said or explained and did not. Feel free to ask questions or query me about your own concerns if you have them…I am open to any thing, except anger.
Thank you all for your love and concern and if for nothing else than for simply being there to listen and read this.
Robert Whitaker’s Anatomy of an Epidemic video:
First I need to say that the article below was lifted from the site bpdcentral.com and i suggest that anyone who desires information about this bogus diagnosis, believing that it exists, can go there to get whatever they want to… I believe that it is PURELY AND ONLY contrived and name-calling and a name calling that follows patients that mostly are those whom doctors do not like, period.
I have posted the checklist below mainly as a springboard for my own discussion, which will follow tomorrow or in the next few days. At the moment, i want only to explain that it was just such a list that i brought to my old doctor, Mary B O Malley (indeed, in order to prove her WRONG) because she had told me back in 2003 that the Norwalk Hospital (Connecticut) nursing staff wanted her to add bpd to my schizophrenia diagnosis, and that she had acquiesced. Even though it was never true, as she later openly admitted to my psychiatrist in 2011, by the way, at this time she said “they” wanted this diagnosis so they could use “certain other measures” in my treatment. This resulted in the use of behavior modification, extreme use of restraints and seclusion, and contemptuous denial of the reality of my feelings…Frequently, Dr O’Malley colluded with them by restraining me for much longer than 24 hours and calling it “treatment.” That this led to unbelievable trauma is beyond doubt, yet she had the gall to persist in denying that I was ever affected negatively… More on this later.
My suggestion when reading the checklist etc below? Read it a second time but substitute the word HUMAN every time they write Borderline, and see how it now reads….You might experience the entire piece very differently this time around! See why I call BPD just “name calling”? It does not exist except in the minds of the doctors who want to insult and label the patients whom they choose not to like or treat like “real human beings”!
Being a borderline feels like eternal hell. Nothing less. Pain, anger, confusion, never knowing how I’m gonna feel from one minute to the next. Hurting because I hurt those whom I love. Feeling misunderstood. Nothing gives me pleasure. Wanting to die but not being able to kill myself because I’d feel too much guilt for those I’d hurt, and then feeling angry about that so I cut myself or take an overdose to make all the feelings go away.
Intense fear of abandonment, real or imaginary.
I have BPD. One night I called my girlfriend and she said she would call me back because she was watching TV. She didn’t call for two and a half hours. It hurt so bad because the day before, I had started to believe that she really loved me. By the time the phone rang I had decided to get rid of her before she could get rid of me. It turns out she had still been watching a movie. I felt so ridiculous, but the pain, the fear, and the gut-wrenching poker in my gut were very real.
Having intense relationships with lots of conflict, and seeing the other person as “all-good” or “all bad.”
When we first began dating, my borderline girlfriend told me I was the very first guy who really loved her for what she was. Everything was fantastic. After a few months, she started criticizing me and everything I did was wrong. She would break up with me and then want to get back together—sometimes in the same day.
Feeling unsure about one’s identity; a lack of “personhood” or non-existence. Feeling empty, like one has a black put inside them that can never fill up.
Like a lot of people with BPD, I have a chameleon-like ability to take on the coloring of the individual I am with. But the act is done more to fool me than to fool them. The process isn’t even really conscious. I feel unreal—like a phony. When other people aren’t around me I feel invisible.
Engaging in impulsive “pain management” behaviors, such as going on spending sprees, having promiscuous sex, driving recklessly, abusing drugs or alcohol, binge eating, breaking the law, threatening suicide or making attempts, and engaging in self-harm.
Parenting my borderline daughter with is a twenty-four-hour-a-day job. She comes in my bedroom at midnight, crying and bleeding from self-inflicted cuts. She has sex with men she barely knows and doesn’t use birth control. Her current boyfriend sells drugs, and I think she is using them too.
Being emotional unstable: frequent and fast mood changes; uncontrolled, intense anger and rage; and intense sadness and irritability.
When in a rage, it seemed like my BP partner was channeling an evil spirit. Her eyes had no life in them: just a blankness. She didn’t see who I was or how she was hurting me. There was no way to negotiate, no way to reason or argue. She did not understand rational arguments.
Her voice would become more rapid, accusatory, demeaning, patronizing, irrational, and paranoid. Her tone was very fast—rat-a-tat-tat—like she was firing at me. She would pace and become very menacing, growing closer and closer as I became more and more afraid.
Paranoia in very stressful situations; episodes of numbness or “zoning out” or “dissociation” (feeling numb or “zoned out”).
After we separated, my borderline wife and I sorted out a time when she wouldn’t be home when I would come to pick up my belongings. At the agree-upon time, she went into some kind of real panic and told me she thought I was coming there to rape her.
When you’re interacting with someone with BPD, it’s crucial to understand that their unconscious assumptions may be very different from yours.
Their assumptions may include:
Keep in mind that these do not reflect the thinking of every person with BPD. You must judge what is pertinent in your individual circumstances.
Well, how did it go yesterday? All in all, I would say it was a very successful meeting. Certainly it went better than I expected, and better than the disastrous meeting a year ago at Middlesex Hospital with Dr Grillo et al. I fear I irritated Dr Mucha a bit at least at first. Why? Because I think he felt defensive and tried to tell me how much he did on my behalf and my mobile facial features (I don’t hide my feelings behind a good psychiatrist poker face) let him know at once that I didn’t believe him. Why should I? One, it was completely self-serving for him to tell me — as if he had been some sort of knight in shining armor behind the scenes — how much good he had done for me, when he let them restrain me day after day for many many hours at a time, and keep me in what he himself acknowledged was on-going seclusion for the majority of the hospital stay. How dare he tell me how much he did for me, and then when I said they “tortured me” actually scoff, “Restraints aren’t torture!”
Ask my brother, Phil, an extremely humane psychiatrist who would disagree, and would rather die than be restrained, but I went one better. I quoted Juan Mendez the Special Rapporteur to the Human Rights Council at the UN who just this past March spoke/wrote specifically about psychiatric patients and how the use of solitary confinement of any duration and any use of restraints, forced medication and forced ECT is torture. He didn’t say tantamount to torture he said that are torture, period. And I would remind Dr Mucha and Mrs. Blair that until you have experienced these things — and I defy you to try any of these modes of your so-called treatment– you have no way of knowing. All you have to do is look at the expression on the face of the woman in the picture I did yesterday.
From the way I was treated, under Dr Mucha’s supposedly magnanimous supervision, at the IOL (depicted in that drawing) anyone could tell that the people “caring for me” did not consider that I was truly human or “felt” their torture in the same way they would have. Because if they had believed that, they never would have done what they did to me, unless they really did deliberately, maliciously want to torture me. I don’t know which it is. Dr Mucha and Mrs Blair say the Donnelly 2 South unit staff are good people who wanted to help me….So which is it? That they didn’t consider me a real person, just a diagnosis and not really human, so they thought I didn’t feel the torture (this despite my exquisitely lucid PAD that spells everything out in detail) they inflicted, or they were actually malevolent and wanted me to suffer? I tremble to have to choose between the two!
Either way, the torture was inflicted and despite numerous calls to Carmen Diaz, the patient advocate, (another name for the Hospital employee who works FOR the hospital not the patient, really) no one, not a soul, came to help me. I called outside sources too, but except for my advocate at the dept of Protection and Advocacy, who is not a lawyer and has little power besides that of complaint, there is not an agency or organization in this entire state of CT that can or would help me. Not a legal aid group or a lawyer besides the court appointed one to fight commitment that would even come in and talk to me about what was happening. I was ALL ALONE, yet Dr Mucha’s knickers got in a twist because I didn’t praise and thank him for all his work behind the scenes on my behalf.
Well, I am sorry, but 1) Dr Mucha is the Director of the IOL and he is IN CHARGE. He did not need to work behind the scenes. He could have spoken to Dr Taylor about her treatment of me at ANY time. If he thought she was not treating me well or using restraints in an unnecessary or wrong-headed way, he ought to have spoken out at once, openly. Period. 2) I needed someone on my side OPENLY. I needed someone to come to me and tell me that they were going to stop this nonsense and get me some real help that no one was going to restrain me again. That they knew my advance directive was meaningful and that things had GONE TOO FAR.
None of that happened. None of that happened. And while plenty apparently did behind my back, I am not responsible for what I was not told and did not know. Though I do appreciate it now that I do know. For instance that Bev, the voodoo princess, who I was terrified of, not because of her voodoo, but because she was dangerous to me as a staff member, having taken an intense dislike to me, indeed such a hatred of me that she was conspiring to kill me…she was removed from D2S unbeknownst to me for as long as I was there. Simply because I had expressed such intense fear of her. That was something I did not know about, but I am very grateful they heard me and did something for me in that regard. Took my fear seriously rather than tortured me with her presence. On the other hand, if only, if ONLY they had told me that she would not be back for the duration, I would have slept better! Why not tell me? For nights I slept fearfully, since I had no way of knowing she would not be on the night shift!
I wish Dr Mucha et al would look into the Open Dialogue method of dealing with psychosis. It will never be implemented in full in this country, and certainly not in hospitals. It is not a hospital-based method in any event. In fact, it is anti hospital and empties hospitals rather quickly. But some parts of it would be eye-opening, such as always including the patient in treatment planning, how that helps bring clarity to even the most disturbed person. How it involves their being NO secrets, nothing hidden, not even disagreements between treaters as to how to proceed. How wonderful it would have been for me to have actually heard Dr Mucha in conference with Dr Amy Taylor et al discussing the use of restraints or seclusion…Do you really think anything would have continued to happen, or that things would have proceeded apace if I had been included in those case conferences about me? I highly doubt it! Oh, if only I had been….I could have told them so much, but of course they didn’t even think to include me when talking about me! How stupid of them, how completely stupid. But I wasn’t a person, just an animal, just a diagnosis.
Anyhow, at the end of our meeting, which did go well after we got off the torture topic, Dr Mucha asked me if there was anything I wanted to end on. I thought a minute and said, “Well, you know, I want to go back to the subject of restraints and seclusion. You continue to use them because you won’t stop using them. You say it is a slow process, that it takes time. But it isn’t a slow process. You cannot stop using them as long as you allow their use at all. All it takes to stop using restraints and seclusion is to STOP USING THEM. Period. Once you don’t have the notion that, Oh, well, we can always use restraints on that unruly patient, so it’s okay, we don’t have to plan in advance about how to deal with her or him if things get out of hand…once you can’t resort to restraints at all, then you must think imaginatively in advance about how to deal with patients and you will find a way. You always do. Necessity is the mother of invention.”
So that is my challenge to the Institute of Living. Stop dillydallying around and pretending that you are reducing the use of restraints and seclusion. Don’t tell me that you are only using them in the geriatric population to reduce falls, because that is not true and that is not really the sort of thing that I am talking about and you know it. You don’t use seclusion and restraint to reduce falls for “an hour” anyway…THree times a week is not a reduction. Once a year is a reduction! But I want you to NEVER use restraints or seclusion again. I want you to understand that to restrain a patient or to use a show of force is to torture someone. Get this one thing straight, to deliberately frighten a patient with a “show of force” is an act of terrorism and has no place in a hospital. (In a prison, maybe, though I would argue against treating any human being like that even in prisons…) And when you torture someone esp a patient who is already suffering and frightened, you make her or him worse, sicker and likely to be MORE violent and less predictable and traumatized, with the subsequent behavior that is known to result after trauma. NOTHING good comes from treating a patient with violence.
I don’t know if the IOL will listen to me, a nobody, a nothing worth less than the paper I am printed on. Not worth a red cent or a paper nickel. No lawyer gives a sh_ t about me, I am not worth their time or effort because I am not worth a stinking dollar. So why would the venerable IOL pay attention to anything I have to say? (I am not stupid for all that, but genius IQs are a dime a dozen, alas… and Mucha and Blair too are no slouches, even if they persist in the delusion that to treat patients with violence is acceptable, and not torture, really.)
LISTEN to ME, LISTEN TO ME! I know what I am talking about. if you don’t you will continue to cause more harm than good. If you do, you will break new ground and start a revolution that cannot but do good. That’s all I have to say.
Dear Dr Mucha and Ms Blair,
Forgive me if I must read this instead of simply speaking extemporaneously, but while I may seem collected to you, inside I’m shaking. Indeed, every time I recall what I recall, or reread the nursing notes about what was done to me this past winter here at the IOL, I start crying. I need to stay in control in order to retain some credibility and so I have written this out in advance in order to make sure that happen
Thank you for meeting with me today. Ever since I was discharged from the IOL in February, I have felt the need to come back here to speak to someone. Yet because of trauma-induced amnesia, it is only now that I have acquired my records and learned the details of what happened that I’m finally able to do so. But at the same time, I wonder why I bother, since it is not as if I expect you to do anything or say anything that will make a difference. You won’t. You can’t. No one ever does, not even when faced with the reality of the most egregious abuses.
Please understand that I know I was a difficult patient. I was loud and upset and hard for some staff to deal with. That is precisely why my Psychiatric Advance Directive was written out the way it was, and why I made my medical and psychiatric history online so available. When ill, I am frightened and paranoid, which makes me easily roused to irritability and hostility. I know this, from a distance as it were. But knowing this now does not mean i was in control of my behavior. I am by nature neither temperamental nor prone to temper eruptions or throwing things. In addition, I am extremely modest, hardly one to disrobe or urinate in public. My friends and family have at times variously labeled me “stoic” and “peacemaker,” which should tell you a lot. But that I did all these things on Donnelly 2 South both horrifies me and concerns me because these behaviors point to something going on distinct from psychosis: they point to abuse and trauma.
Let me make it very clear that I have behaved in such outrageous ways before, yes, but only in response to extreme circumstances – as when i was subjected over and over to restraints and seclusion in a horrific and sadistic fashion at Manchester and Middlesex hospitals in 2009 and 2010. It is too bad that when Amy Taylor took it upon herself to violate my HIPPAA privacy rights and investigate my previous admissions, without asking my permission (which I never would have granted) she failed to make the connection between their abuse, and my subsequent behaviors there…It turns out all she drew as a conclusion was that if those hospitals could use restraints and seclusion ad libitum, well then, so could she. It didn’t seem to matter to her that in 2009 and 2010 those measures not only didn’t work, they made things worse when Dr Taylor followed their examples, the same results ensued, just as my PAD predicted.
I was admitted to Donnelly 2 South, and I came in with the very detailed Psychiatric Advanced Directiveas as I said. I made it very clear that my online electronic medical record was available. It included documents such as my narcolepsy diagnostic consult and special documentation proving my need for a higher than usual dosage of Ritalin, written by my former sleep specialist who was also my psychiatrist from 2000-2009. Included as well was a letter she wrote to my present psychiatrist, Dr Angela Cappiello, explicitly stating her conviction that I do not have a personality disorder, borderline or otherwise, and never did.
According to Dr Sanjay Banerjee he read every page of documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr Cappiello, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, Philip Spiro, MD, himself a psychiatrist brought the same matter to the fore again when in discussion with Laurie Denenberg, but her response was much the same:
“Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such an document. “ If this was so, then how did it come to pass that Amy Taylor wrote on my discharge summary that I have a “long history of Borderline personality disorder” and herself diagnosed “Personality disorder NOS with borderline traits”? I was being treated for four weeks for an active psychotic disorder. She would have no way of knowing whether or not I had any personality disorder, given the axis I diagnosis and you know it. She did too.
Dr Mucha and Ms Blair, you were not there on the unit or in the quiet room with me, so were you even aware of what happened half the time? Did you know for example, that on Februrary 6, I walked away from the quiet room, strolled down the hall, looked out the window and slowly retraced my steps back to the quiet room. But when I arrived I I was confronted by a cohort of staff who proceeded to 4-point me, even though I was quiet and put up no resistance? Not wanting to give them any reason or justification, I passively lay down on the bed and placed my own limbs out for the restraint cuffs, saying, (I quote my journal entry made later that evening): “For shame. You ought to be ashamed of yourselves. I am not and never was a danger to myself or others.” Their response was “ You refuse to follow directions so we do not know what you will do. This is not punishment, Pamela, this is what your behavior brings on every time.”
Were you aware that they always restrained me, spread-eagled, so tightly I couldn
‘t move a muscle? That they never permitted bathroom breaks or even let my hands free to eat? That I would fall asleep rapidly after three injections –whether calm or not, it was a routine punishment needle in the buttocks: Haldol, Ativan and Benadryl —and they would invent reasons to maintain me in restraints even after asleep for hours? Or when I woke, groggy and hardly dangerous to anyone, they would grill me with questions that I could not answer, and they would use my inability to respond as reason not to release me?
Later in the evening on Jan 6th, for the second time that day, they restrained me, for throwing half a graham cracker at the wall. Then, as usual, they left me like that for six hours, even after I fell asleep. In point of fact, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. Of course not, because I hadn’t done anything to earn my way into them in the first place. They always refused to release me, ALWAYS, until I literally cried, “Uncle” when they told me to.
As to those vaunted
“shows of force “ what did you expect? Presented with a cohort of threatening staff personnel I saw one thing: an impending assault. I know they anticipated my panic; it said as much in my chart. Isn’t that the point of a planned “show of Force” – to induce fear and panic? Why else do it? So why should it be any surprise, when I defended myself as they grabbed me? When they stuffed me into a body bag and were trying to tighten the straps, surely you can understand why anyone would bite the hand of an attacker whose digits came near. It was a matter of life and death!
But none of it should have happened. My PAD explained in exquisite detail exactly what to do and what I respond to better than fear tactics and force. in fact, It is beyond me, knowing that one of the admission diagnoses I came in with was PTSD, how you Dr Mucha, could possibly approve in advance, the emergency abrogation of my PAD and a “just in case they are needed” use of restraints and seclusion. Why not counsel the person asking for this advance “right to restrain” to do all in his power NOT to restrain me and to work with the PAD instead?
Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:
“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.
“Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors that staff members are attempting to control or eliminate.
I have been traumatized, and not just by hospitals. I was date-raped three times in my twenties and experienced traumatic domestic abuse by a long-term roommate. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without serious consequences: regression and serious worsening of symptoms. Unfortunately, as soon as the staff saw fit to use physical methods of coercion and control on me, read punishment, from the first time a staff member grabbed me, all bets were off as to how I would behave. I certainly ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate? Violence begets violence….
I tried to get help even when on the unit, at least I tried when I was free to make calls or leave my seclusion, err, forced-voluntary time-out two-week-long stay in the quiet room last winter. I made I do not know how many, but many, calls to the patient advocate office, but the sole time anyone made contact was when Carmen Diaz came to hand me some paperwork – I believe I was actually in 4 point restraints at the time — papers I could not read about the forced medication hearing. I needed her advocacy, but she never responded to my panicked calls in any way that was helpful to me. I wanted her help, but she never came by to ask me what I needed. She was less than useful, the fact that I had to go through her, and her refusal to respond contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr Banerjee tried to force me into ECT.
And where did the ECT discussion come from? My PAD states in no uncertain terms that I would refuse ECT under any and every circumstance. My brother would be my conservator if Banerjee had sought to go down that road, and he would never have made any decision to counter my wishes on that subject. If Banerjee really read my PAD, he would have known that, and you too. Because he implicated you, you know. He told me that “Dr Mucha and I have made the decision to force me to have ECT.” Oh, I know, the chart talks about having “discussed the possibility of ECT with me” but that is not how it went down. I recorded the conversation in my journal directly after it happened and Dr Banerjee presented it as a discussion that you and he had, and a decision that you and he had come to, not one that I was privy to. And he presented it as one that I had no choice in.
Nevertheless, let me ask you this: regarding ECT and my so-called depression, were you fully cognizant that Banerjee had stopped my 75mg of the antidepressant Zoloft during the first or second week I was there? “Do you really need that?” he had asked, “You don’t seem depressed to me.” Obedient, and in any event glad to get off any medication at any time, I shook my head, assenting to the change. I remembered having trouble getting down even to 50mg quickly at Natchaug the summer before, I dared not mention this and frankly believed it had been a fluke, the opposite of the placebo effect in a sense…So I went along with Banerjee’s decision to summarily cut the Zoloft and hoped for the best. At least, I thought, if things go haywire, it will not be due to self-fulfilling prophecy, a doctor looking for symptoms he expects to find and conveniently finding them. And at least he will know the reason.
A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal of Lamictal, a drug I had not taken in months. Now he was applying to force me to take ECT, something I was terrified of, and to have calculated brain damage.
It was this threat, and the brutality with which the decision was handed down, that started the downhill course of my IOL stay.
The very next day, all hell broke loose. When I entered the conference room, I pushed some important notes I needed Dr B and Laurie to read across the table in front of them. They refused, claiming that I threw the papers at them. Instead, Dr B proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.” I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.
It could have ended there. I could have been left alone, to cool down and calm myself. But no, Dr Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, ie physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was NOT hurting anyone or even threatening anyone or myself with harm. ALL that I had done, in terms of physical threats, was to throw a lightweight chair at the wall. And that, it was clear to everyone, was intended not as a threat to anyone. Furthermore, it was done and over with. I had left that area and gone to my room. I had then come back and now sat on the chair by the phone, speaking to my interlocutor on the other end. There was no need to pick a fight or encourage a struggle. A wait-and-see policy could have successfully guided the situation to a better resolution not only for the situation at hand but for the entire hospital stay. As the poem by Dylan Thomas goes: “After the first death, there is other.” Once they decided to use restraints, there was no going back. The first time broke everything, So they used them again, and again and more and more freely and without justification but for convenience and punishment.
Back to Feb 6, after sleeping for six hours, I was taken out of restraints just in time for a visit from Dr Cappiello. Observed by my 1:1 staff member, I could barely whisper and dared not tell my outside psychiatrist the full extent of the abuse that had been happening. Nevertheless, she took one look at Dr Taylor’s behavioral treatment plan posted on my wall, and told me that it would be impossible for anyone, even someone who was well, to follow it to the T. She was so worried about me, and about my ability to complete the requirements, even for a “mere 24 hours,” that she intervened. The next day was the single day that Dr Taylor planned to be out of town, so Dr Cappiello asked Dr Mehendru to evaluate me for discharge, telling her that she feared a power struggle had been set up that I could never win.
When Dr Mehendru came to see me, at first I was angry, as the chart indicates, thinking she was just another Taylor flunky, preparing to use more restraints and seclusion, But when she asked if I would like to go home, I took one look at her, saw sincerity in her eyes, and burst into a smile, ready to say yes to anything. Miraculously “cured,” I left the IOL that very same day, less than 12 hours after being released from 4-point restraints and not 4 hours out of seclusion.
However, I was not well. And within two weeks time, I was back in the hospital, this time to be admitted to Yale New Haven Psychiatric Hospital, via their emergency room. Over the next 3 weeks I experienced an entirely different kind of care. At Yale I did not find a staff ready to fight or try to seclude or restrain me. This staff did not need their day to be hassle-free with drugged and cowed patients. Instead, they were trained to remain tolerant, calm and compassionate in the face of sometimes very trying circumstances. It worked. Even when I screamed and yelled and swore, they countered with compassion, and lo, I calmed, no brutality needed, not even IM medication. They had no need or use for cruelty at YNHPH. I felt they sincerely wanted only to understand and help me heal.
Appreciating the shock and trauma of my IOL stay, each staff member I dealt with did everything in his or her power to prove that hospitals do not have to be brutal or abusive. At the IOL they pretend to use “best practices” but in truth it consists only of coercion and control. Treatment at Yale was in fact the “best practice” possible, and it consisted mostly of being consistent. Consistent in being patient-centered, trauma-informed care, consistent in being not cruel and uncaring, consistent in being humane to each and every patient, consistent in extending a compassionate hand and heart to every patient and reacting in a different and more constructive fashion than did the staff at the IOL (or at Middlesex or Manchester etc).
And you know, though I was still the same person with the same problems, loud and angry at times, even “violent” to property in my frustration, and still psychotic, they never responded with a show of force. Why would they? At Yale it would be absolutely anathema to deliberately frighten a patient. What would be the purpose in that, they would think…. They also never showed up at my door with forced medication or pushed me into a seclusion room or strapped me down in punitive 4-point restraints, or any of the other ill-advised responses that my PAD explains are the worst things to do to anyone who is struggling, scared and paranoid. In point of fact, Yale Psychiatric Hospital’s Washington Square unit does not have a seclusion room. They also have a “restraints-free” policy, so they didn’t use those at all either.
The IOL on the other hand with its “We only use restraints and seclusion if we have to
“ policy, restrained me countless times, and for many more hours than was even legal. When I woke up that last morning I spent there, the room opposite me was occupied by yet another person in restraints! That is because, you know, once you allow a staff to use restraints a little, it only takes a little to use them a lot. And once you sanction the use of restraints and seclusion at all, it is only time before someone abuses them and abuse becomes the norm.
Some final points:
CMS regulations on use of Restraint and Seclusion
Restraint or seclusion may only be imposed to ensure the immediate physical safety of the patient, a staff member, or others and must be discontinued at the earliest possible time.
(ii) Seclusion is the involuntary confinement of a patient alone in a room or area from which the patient is physically prevented from leaving. Seclusion may only be used for the management of violent or self- destructive behavior. This means that IOL’s definition of seclusion as being “kept alone in a room to which the door is locked” is wrong. I protested that I had been secluded all along, for a good two weeks before they instituted formal seclusion. I was not violent or self-destructive, and certainly not imminently dangerous to self or others…NEVER was anyone in immediate physical danger.) Yet you allowed them to abuse me and seclude me because I was loud and made people uncomfortable…Instead of dealing with me, you let them torture and punish me. WHY? WHY? Why? I want an answer to this question.
“The highest price of all is the price paid by the people who are restrained: their recovery is stalled by a practice that can disempower them, break their spirit, and reignite a sense of helplessness and hopelessness…” from Recovery Innovations
Worst of all, using restraints doesn’t work to make either the patient calmer and safer or the unit a calmer safer environment to work in for staff. In truth, things only go from bad to worse once you restrain an unruly patient…Violence only begets more violence…Moreover, when I was at Natchaug Hospital, i was told by one of their mental health workers that she had wanted to experience the process of being four-pointed herself so she could identify with patients. She was told no, because as the aide informed me, hospital administrators feared it would be too traumatizing.
Where do we go from here? Well, I will never return to the IOL; inflexible IOL policies have no safeguards in place to properly protect patients. I came prepared, Dr Banerjee said so. And yet it did me no good, because all the preparations and advance directives in the world do me no good when staff is given carte blanche by their own director to ignore them.
So where we go from here is largely up to you. You can simply ignore what I have written, tear these sheets up, justify all staff behaviors and throw away my complaint as meaningless information. After all, Dr Mucha, you are retiring in a few days, so you can leave all this behind without a care in the world. Ms Blair, even you don’t need to believe my words, you can simply trust the superficial, documented words on the chart, and if necessary, the lies of staff as to what happened. What you don’t know won’t hurt you. But lies they are, and lies they always were, even as they told me what they were going to write in order to get away with restraining me as punishment. The problem is that not everyone was so clever as to cover her footprints, so once or twice the truth was written down and not corrected later. I will show you those pages if you wish to see the evidence I have.
The problem for you is not that I am going to sue you for malpractice, No lawyer is going to take my case on a contingency basis. No one in this country or anywhere in the world cares about a mental patient who was tortured in an abusive hospital situation but didn’t die. I would be worth money dead, yes, but not alive…Your staff knew this and that is why they knew they could get away with it…No, the problem for you is strictly moral, one of conscience. But if you can live with it, then I cannot change a thing.
The IOL could change, it could adopt a philosophy of patient-centered, trauma-informed care, as Yale has done, but that would require changes that would involve every aspect the unit. I doubt IOL administration has the ethical or moral fiber or the political will to do it. I think you choose to remain a brutal, backwards and controlling institution because it feels easier and you believe it is cheaper, though both notions are mistaken. Sometimes it just feels easier to think mistaken thoughts than to challenge them and learn to think in new ways, absorb new paradigms. This is unfortunate because in the end the IOL would save money and patients would heal with less trauma, if you implemented changes that actually worked rather than resorting to the old ways of cruelty, coercion and abuse.
That is all I have the time and energy to say, for now.
Large picture I did at Yale Psychiatric Hospital, the second one.
The pictures below are actually only 2.5 by 3.5 inches and are artist trading cards. I drew many of them, especially when I did not feel like working on my larger drawings at the hospital.
In mid-February, after a week out of the hospital (and you can read about my hospitalization by scrolling down to the previous post, but, in brief, this had been at Hartford Hospital’s Institute of Living, during which I was kept in seclusion for the larger part of a four week stay and put multiple times, sometimes twice a day for many hours in 4-point restraints. Why? Why? Although I ONCE threw a chair, they told me it was for “not following directions.” To add insult to injury, every incident in which they restrained me was accompanied by three injections in the buttocks of Haldol, Ativan and Benadryl, despite my policy of passive, completely non-violent non-resistance.)
In any event, in mid-February, after I had spent just a week at home, I became acutely psychotic again, and in consultation with the only doctor I trust, a friend drove me to Yale New Haven Hospital’s emergency department. There, after a very long and arduous wait — alas, I cannot say much that is good about Yale’s ED. It felt like the psych/alcohol patients – and there were no discriminations made between the drunks and anyone else — were lined up on their beds in the hallway like buses at a terminal for what felt like “miles.” In fact at one point there was probably a line 15 gurneys long snaking around the corner until I could not see the end.
I was there for two and a half days, maybe longer, I do not recall. In fact, I remember nothing about my ED stay after I was finally “admitted” to the actual psych portion of the ED, as opposed to the hallway. I believe I was finally given medications, but also that I was no longer permitted access to my artist crayons, which meant that I only wanted to sleep and likely did until I was admitted to the Yale Psychiatric Hospital, a street or two away.
To say that my experience at YPH was an order of magnitude better than it had been at the IOL or even at Natchaug Hospital is truly not to give YPH enough credit. I scarcely want to mention the other two hospitals in the same sentence, that is how different Yale is and I say that even though I once considered Natchaug my “gold standard.” No longer, no longer. I think Natchaug was decent once, but only because of the civilizing and humanizing effects that the director of nursing, Sharon Hinton, APRN, had on the hospital. Once she left, the whole place went to pot, as evidenced by my experience during the last two stays, which went progressively from bad to terrible without her there…literally without her protection I was brutalized by a dehumanizing medical staff that had been left to do whatever it wanted to on its own, to hell with the consequences to the patients.
Be that as it may, and we know that the Institute was never humane, Yale took me completely by surprise. I was hard to surprise, and hard to convince that they were for real in their gentleness and kindness, let alone in their determination to treat me and everyone there with respect and dignity. I was certain that they would prove me right, that SOMEONE would be put into restraints, that someone would be violent enough to push their buttons and get 4-pointed. But it never happened, not in the entire three weeks I was there. Not even when a patient threw a punch or a push. Not even when a patient screamed bloody murder or used foul language. Nothing that earned me or anyone else seclusion or restraints elsewhere even came close to pushing the staff’s anger buttons at Yale. Instead, they persisted in using persuasion and gentleness and kindness…and if anyone lost it, if anyone became angry and could not keep it together, so far as I could tell, that staff member took themselves away from the situation to cool down, and did not take it out on the patient.
The most amazing things happened. No one forced me to do anything. Not even to take medication. I agreed to take it, after some discussion with the doctor and social worker…but when I evinced some doubt about the side effects, instead of pooh-poohing them as the doctor had at the Institute, Dr Milstein agreed with me, saying that the Zyprexa definitely increased appetite, and that it was not imaginary or something that was in my control, the way Dr Banerjee did at IOL. Instead, he and the other team members not only agreed to help me control what I ate, but went out of their way – I believe they actually went “Stop and Shopping” – to provide me with my own private supply of raw vegetable snacks in the staff refrigerator to eat at any time of the day…just so I wouldn’t have to be tempted by the hospital snacks of Doritos etc.
Dr Milstein asked me not to worry about what they did or did not do “extra” for me, and I tried not to. But when two large bottles of brand name Diet Coke kept appearing for me every day, and when the resident was sent to buy me batteries for my personal pencil sharpener (with a grinder not a blade), just so I could continue to do my artwork and not rely on the staff to sharpen my pencils in the back, well, I knew 1) they were truly watching out for me and treating me with TLC, or what certainly felt like extraordinary care, and 2) they were in fact spending “extra” money, if not indeed their own money just to supply these special needs…All of which – or NONE of which would have mattered at any other hospital or to any other staff. If I had no pencil sharpener, who would care? If I had to eat hospital food, who gave a damn? Dr Banerjee basically said it was MY fault and only my fault if I gained weight on Zyprexa, that none of his other patients, the good ones, ever did. But at Yale, all these matters were important to me, and so they were important to Dr Milstein to to Chris Simpson the social worker and to the other team members. Not just as a matter of words, but to be taken care of so I could both take the Zyprexa and do art.
Just as important, Dr Milstein took at least a half hour every single day, and I think sometimes it was more than that, simply to talk with me and listen to what I had to say. Even if it was only to rant about how badly I had been treated at the IOL. He repeatedly told me that he just wanted me to learn to trust again, to believe that not everyone was against me or would hurt me…And if I did not learn that precisely, I did eventually come to believe that the staff at Yale were trustworthy and kind and meant what they said about their NO restraints and NO seclusion policy, for everyone. I may had still had frissons whenever someone screamed or threw a fit, panicking, believing that 4-point restraints were finally going to be resorted to. PTSD is not that easily overcome after all. But I grew more trusting, and by the time of discharge, I was able to thank them all for everything, to know that they had gone out of their way for me, and not feel too guilty.
I did a fair amount of art while I was at Yale Psychiatric Hospital. I will post more in the coming days.
This is the drawing I finally finished that I did at the horrible torture chamber of the Institute of Living. There are all sorts of hidden things in it that you must rotate it to see fully…
Hi Everyone, Sorry to worry Lady Quixote and anyone else. I was in Yale New Haven Psychiatric Hospital for last several weeks. A much better stay by far of which I have much to say. But I am recuperating for the next few days as I just got home a couple of days ago. Forgive me for being so out of touch, but even making a long distance phone call was nearly impossible from there…Luckily, the staff and doctor treated me and everyone with immense kindness, gentleness and dignity and respect, so I got what I needed, which was some weeks of healing. Praise whatever force of the universe you believe in for that! More to come as soon as I am able to write more and many thanks for all your concern and your patience.
These are the first two pages, including a note from the cover page, of my very very detailed Psychiatric Advanced Directive, and I think you will see why what happened at the Institute of Living, the psychiatric section of Connecticut’s Hartford Hospital, NEVER should have happened. Not only did I bring a hard copy of this PAD, but I wore a medical bracelet with a code for a very complete online medical record, with uploaded documented evidence, both of narcolepsy diagnosis and need for medication, proof from longtime outside mental health providers that I do NOT have “borderline personality disorder,” and other such assistive documents…ALL were soon ignored completely in the effort to discipline and punish me “for not following directions” i.e. not getting better fast enough and speaking my mind to the psychiatrist.
Prominent NOTE on cover page:
Miss Wagner has experienced multiple episodes of severe psychological and physical trauma. She must NOT be subjected to either physical or mechanical restraints or involuntary seclusion at ANY time. The use of either imposes a serious risk of re-traumatizing and injury, leading to regression and severe worsening of symptoms.
HOW TO INTERVENE IN A CRISIS:
DE-ESCALATION IS ESSENTIAL
STATEMENT TO CAREGIVERS
It is vitally important that you understand that despite a few previous in-hospital assessments, I do not have a personality disorder, borderline or otherwise (you can confirm this with any of my longtime outpatient providers) and that if my behavior seems out of control, it is because I am out of control: I literally do not at the time know what I am doing or why. I am not manipulative or attempting to achieve secondary gain. The fact is I have had tertiary CNS Lyme disease and after positive PCR and Western Blot tests during treatment, I was informed the condition is likely incurable. (Dr ******* of ****** NY, will confirm this.) During the initial illness, my brain developed multiple lesions, visible on MRI, which may predispose me to temporary emotional and behavioral extremes and abnormalities but these are NOT my norm. Anyone who knows me well would confirm this, if you asked them.
You need to understand that I am not always able to communicate the extreme fear I feel, the global paranoia that I experience, but because I feel so threatened and unable to communicate clearly about it I may become very angry at the hospital situation. I am not an angry person. I do have trauma issues, as many people do, which may be exacerbated by being in the hospital.
Please be aware in advance that my “memory in the p.m. for what happened in the a.m.” is often faulty. That is just how it is. When in crisis, I have little ability to recall from moment to moment what happens. This is why it is essential that I be able to write things down. I have lost many years to this amnesia and if I suffer additional trauma it will only make it worse.
I beg of you, do not make assumptions about me. Do not make assumptions about my state of mind. Do not “put two and two together” in your mind without asking me if the conclusion you have drawn is the correct one. You do not know what is inside my head without asking me.
Ascertain whether the information you have at hand is correct. Too many records and hospital charts have been drawn up (because “patient is not communicating”) on faulty information from earlier charts or information gleaned from others but not from me, and the consequences to my treatment have been devastating. PLEASE CHECK MY INTERACTIVE HEALTH RECORD ONLINE at www. — .com Use code ***** to get access.
I have been traumatized by abuse, sexual assault and by brutal treatment in hospitals, from being deliberately choked and given forced ECT to being kept in four-point restraints for several days at a time. So if I experience seclusion or restraints or even that euphemistic obscenity called a “therapeutic hold” it will be devastating and counterproductive. Such treatment invariably leads to increased anger, regression and worsening of symptoms, and my behavior becomes unpredictable afterwards. This is a response to trauma NOT because of any inborn temperamental disorder. I have already outlined a better way to deal with me and help me on page 2.
I KNOW YOU MAY NOT APPROVE OF POLYPHARMACY. But you need to understand that I must take the antipsychotic drug combination: Abilify 15mg with Geodon 160mg, a TWO-Drug regimen. Monotherapy does not work. I have tried many solo drugs over the course of 4 decades – Thorazine, Mellaril, Haldol, Prolixin, Clozaril, Risperdal, Seroquel, Zyprexa and others – ALL monotherapy has failed.
I will not take any drug that induces weight gain. If you force the issue, know that it will be a useless endeavor because I will stop taking it immediately upon leaving the hospital.
Finally, understand that if I am here in the hospital it is for a reason, and I want only one thing: to get better and be out of here as soon as possible. You can traumatize me and worsen my symptoms and keep me here too long, or you can work with me to achieve my goal, which should be the same as yours. I don’t see any other alternative.
Pamela S. Wagner
Now, I think that is about as crystal clear as it can be, no? And indeed, Dr Banerjee, my first psychiatrist LOVED it. Said so, and raved about how complete both were, both the PAD and the online medical history which he downloaded, printed out and brought with him to our first consultation. So what happened? YOU tell me! I will write more about what I think happened later. I am still trying to figure it all out.
But still worth reading.
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