Category Archives: Health Care Reform

OTC hearing aids and lower prices-soon!

this is the fact sheet that I obtained from senator Elizabeth Warren,s website.

The Over-the-Counter Hearing Aid Act of 2017

Approximately 30 million Americans experience age-related hearing loss, including over half of adults between the ages 70-79.1 Yet only a small share of Americans with hearing loss – around 14 percent – use assistive hearing technologies, primarily because they cannot afford to buy costly hearing aids.2 Hearing aids are not covered by Medicare or most private insurance plans, and out-of-pocket costs for a single hearing aid average $2,400 – far out of reach for many consumers.3 As a result, individuals living in poverty are substantially less likely to have access to hearing aids than those with higher incomes.4

Complex hearing aid regulations exacerbate this problem by restricting the availability of hearing aids. In 1977, the FDA imposed a set of special regulations on hearing aids, including a requirement that individuals obtain a medical evaluation or sign a waiver of that evaluation before being allowed to purchase or use a hearing aid. After an extensive review, the National Academies of Sciences, Engineering, and Medicine found “no evidence that the required medical evaluation or waiver of that evaluation provides any clinically meaningful benefit” and recommended “removing this regulation to serve consumers’ best interests.”5

Both the National Academies and the President’s Council of Advisors on Science and Technology (PCAST) have also recommended making some types of hearing aids available over the counter – similar to the way in which basic reading glasses are available without a prescription. PCAST’s analysis of the hearing aid market concluded that “consumers find it difficult to shop for the best value.”6 Hearing aids are typically sold “bundled” with fees charged for evaluation, follow-up, and adjustments to the device, even though many consumers never use these services.7 Allowing hearing aids to be sold over the counter will expand consumer choice, open the market to innovative hearing technologies, and drive down prices so that millions more Americans can access affordable hearing aids.

The Over-the-Counter Hearing Aid Act of 2017

The Over-the-Counter Hearing Aid Act of 2017 implements recommendations from PCAST and the National Academies to help the millions of Americans affected by hearing impairment. The Act:

• Makes certain types of hearing aids – those intended to be used by adults to compensate for perceived mild to moderate hearing impairment – available over the counter.

• Removes an unnecessary and burdensome requirement that consumers obtain a medical evaluation or sign a waiver of that examination in order to obtain an OTC hearing aid.

• Requires the FDA to issue regulations containing safety and labeling requirements for this new category of OTC hearing aids.

• Maintains existing safety, labeling, and manufacturing protections and applies them to OTC devices in order to ensure that OTC hearing aids are held to the same high standards as other medical devices.

• Requires the FDA to update its draft guidance on Personal Sound Amplification Products (PSAPs), consumer electronics products that may use similar technology to hearing aids, but are intended for use by individuals with normal hearing.

————————-

1 Frank R. Lin, John K. Niparko, and Luigi Ferrucci. 2011. “Hearing Loss Prevalence in the United States,” Archives of Internal Medicine 171: 1851-1853 (online at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564588/).
2 National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 183.
3 President’s Council of Advisors on Science and Technology, Aging America and Hearing Loss: Imperative of Improved Hearing Technologies (October 2015) (online at: https://www.whitehouse.gov/sites/default/files/microsites/ostp/PCAST/pcast_hearing_tech_letterreport_final.pdf), p. 1. National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 21-22. Sergei Kochkin. 2007. “MarkeTrak VII: Obstacles to Adult Non-User Adoption of Hearing Aids,” The Hearing Journal 60: 24-50 (online at: http://www.betterhearing.org/sites/default/files/hearingpedia- resources/MarkeTrak%20VII%20Obstacles%20to%20adult%20non- user%20adoption%20of%20hearing%20aids.pdf). Karl E. Strom. 2014. “HR 2013 Hearing Aid Dispenser Survey: Dispensing in the Age of Internet and Big Box Retailers,” The Hearing Review 21 (4): 22-28 (online at: http://www.hearingreview.com/2014/04/hr-2013-hearing-aid-dispenser-survey-dispensing-age-internet-big-box- retailers-comparison-present-past-key-business-indicators-dispensing-offices/).
4 Kathleen E. Bainbridge and Virginia Ramachandran. 2014. “Hearing Aid Use among Older United States Adults: The National Health and Nutrition Examination Survey, 2005-2006 and 2009-2010,” Ear and Hearing 35: 289-294. 5 National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 120-121.
6 President’s Council of Advisors on Science and Technology, Aging America and Hearing Loss: Imperative of Improved Hearing Technologies (October 2015) (online at: https://www.whitehouse.gov/sites/default/files/microsites/ostp/PCAST/pcast_hearing_tech_letterreport_final.pdf), p. 3.
7 Karl E. Strom. 2014. “HR 2013 Hearing Aid Dispenser Survey: Dispensing in the Age of Internet and Big Box Retailers,” The Hearing Review 21 (4): 22-28 (online at: http://www.hearingreview.com/2014/04/hr-2013-hearing- aid-dispenser-survey-dispensing-age-internet-big-box-retailers-comparison-present-past-key-business-indicators- dispensing-offices/). National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 242-243, 258- 259. Consumer Reports, “How to Buy a Hearing Aid” (July 2009) (online at: http://www.consumerreports.org/cro/magazine-archive/july-2009/health/hearing-aids/how-to-buy-a-hearing- aid/hearing-aids-how-to-buy-a-hearing-aid.htm).

 

Open Letter to Kathryn Power of SAMHSA

Dear Kathryn Power,

In May 2014, mute and psychotic, I was taken to Hospital of Central Connecticut in New Britain’s Emergency Department by ambulance. My visiting nurse, in concurrence with my outside psychiatrist, had called 911, concerned about my safety and my ability to function because I had not spoken for weeks and was not taking adequate care of myself. I was not agitated, instead, I was unable to speak and slowed down rather than anything else.

More than a year has passed since then, so instead of relying on memory, I will paste here what I wrote shortly after my subsequent hospital stay, with edits for clarity and concision. Some has been taken from the secret journal I kept in that hospital, a journal which I was forced to scribble on pieces of torn-up brown paper waste basket liners, surreptitiously mailing them to a friend immediately the moment I finished writing. I  had to do it this way because a housekeeping staff member had told me that nurses instructed her to throw out everything in my room, including first class mail, each time they found a reason to seclude me, which was frequently (nearly every day in fact, and sometimes more than once a day.)

More on this follows.

But first let me tell you what happened in the Emergency Department. I came in by ambulance. I did not want to but was given “either the easy way or the hard way” choice by the police who came with the 911 call. I did not resist or fight, nor was I restrained in any way in the ambulance. As I said, I was mute, which had deeply concerned my Visiting Nurse, and mostly passive. I merely handed the EMTs my medication sheet and my detailed but clear Psychiatric Advanced Directive. This is critical as on page one and two are clearly typed vitally important information about my trauma history and how to deal with me in a crisis, including provisions for when I might be mute.

 

The first page of the ED chart states that availability of my Advance Directive is “unknown.” Nevertheless, the ED triage note states, with apparent disapproval and resentment, that “pt presents with detailed instructions on how to provide her care..” i.e. the psychiatric advance directive. This seems to have been immediately disregarded, as insulting to their knowledge…

 

ED Nurses note: “Seneilya… RN Assumed care of patient. Patient arrived via EMS after VNA called for increased anxiety. EMS reports patient refused to speak but wrote down, “Sunglasses block hate. I don’t want to hurt anybody.” [*sun-glasses are “hater-blockers” yes, but they block other people’s hatred. The RN never got my point and I was mute with no way to communicate the distinction…] “On admissions patient refused to speak to this RN. Patient pointed at her head when asked why she was here. Patient nodded “yes” when asked if she was hearing voices but refused to answer other questions. …(next sentence indecipherable)

 

Report given to Beth RN who assumed care of patient…”

 

At 15:19 Beth RN wrote the following:

 

“Pt not responding verbally to this nurse, this nurse looked through her art book and placed it back on her stretcher then pt picked it up and slammed it down on the stretcher and pointed her finger at the book. Unable to get pt to communicate. Pt pulled sheets over her head. Pt still in street clothes, will pt [sic] as is until examined by MD.”

 

What is not said here is that this nurse, “Beth” never asked me whether she might look at my art book. She just took it. She refused to allow me any other means of communication, except  speech. When I was unable to do this, she did not inquire as to why I did not speak nor apparently did she attempt to make inquiries from anyone else why this was so. If she had provided me with means to write I might have been able to tell her what had happened in the previous two weeks at home. Instead, she appeared to become angry and from then on refused to permit me any mode of communication other than the one she preferred.

 

I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so.

 

Beth RN records what happened after a meal was given to me that I did not eat (it was not vegetarian).

 

 

“Pt ate nothing,” Beth RN reports, “[but she] wrote messages with ketchup and French fries, [saying] ‘I need a crayon.” [***] This nurse told pt she needs to speak because she can, pt threw everything on her table on the floor, food juice, etc. Pt then picked up fries from the floor and started eating them and gathered more and putting them in the bed with her and kicked the other food away in the OBS area.”

 

“Pt went to the BR, seen coming from the BR with paper towels then pt observed writing with her finger on a paper towel with something, first thinking it must be ketchup, then maybe jelly, then this nurse got up to check and pt found to be writing with her own feces, some paper was able to be removed, other paper with large piece of BM pt threw at this nurse. Pt moved to room 42 [seclusion] then pt got OOB and snuck around corner and tried to attack this nurse [?***] from behind, [public safety was able to get to pt first,***] pt to be medicated and restrained. Pt licking feces off fingers, would not let nurse wash her hands…”

 

In point of fact, fact I never attacked or even  tried to attack the nurse as you will see.

 

And the nurse knows this, because she backtracks in the chart and says so, here” the Public Security was “able to get to pt first” so she knows full well that I never  ‘”tried to attack her” and they knew they had no right to restrain me. The chart alone makes it clear that I never did a thing. She would not have phrased it that way if I had attacked her, or even attempted to. No, if I had attacked her, she would said so. In those terms. Not in uncertain, vague terms. She never would  have said what amounts to, “Oops, patient attacked me, but the guards got to her first before she, um, tried to attack me, so really she just wanted to attack me, I think, but never really did, so…um, she never did even really try to attack me, I just assume she wanted to, but like, you know, I can’t really be sure, like, that she wanted to attack me she just looked really, really mean and she wasn’t saying a word, so I betcha she did, and I am really, really glad those guards stopped her from trying to attack me just in case she, like, might have wanted to try to attack me, you know?”

 

Now I want to tell my side of this story because they invented this story out of whole cloth. Yes, parts of it are true, but the chart puts them out of order and not the way Beth related it. This is important because the way she wrote it makes me seem like I spontaneously leapt off the gurney and attacked her out of the blue, which never happened. However, I was also privy to a conversation by the so called Public Safety officers, AKA Guards, who in front of me, in fact while they were holding me down (I was mute, mind you, so remember that they thought I was also deaf, or forgot I was not) decided to create this story in order to justify 4-pointing me, because they simply wanted an excuse to do so.

 

What really happened was that due to my need to communicate, I wrote my needs with ketchup on the paper box the meal came in. Then that too was taken away from me, and Beth came up to me, and instead of speaking to me, handed me a NOTE she had written (the irony of this is beyond belief!) saying, “I will not speak to you or give you anything to write with until you start speaking to me.” At this point, I was livid and also so desperate to write I had no choice but to use whatever I had at hand.

 

So, yes, I did do as she wrote in the chart: I went to the bathroom and had a bowel movement and took some feces back to my cubicle and I tried to write journal entries about what was happening to me on paper towels with my own fecal material. And no, this did not go over very well with Beth or anyone else. But I never attacked Beth or even tried to assault her. Instead, she snuck up on me and snatched my art book out from under me and raced away with it, holding it up in triumph as she did.

 

I was so furious that without even a thought as to possible consequences, I raced behind her intending only to grab my book back. That was all. I never assaulted her, I never so much as touched her. I wanted only to only grab the book back that she had not asked to take from me. Period. As she suggests when she says, “public safety was able to get to patient first.” Well, in fact I had never any intentions of “attacking Beth or anyone else and the guards knew it. But the fact is, I never touched or attacked anyone, they grabbed me and attacked me!

 

That was the point when they dragged me to “Room 42″. The two guards, holding me down, decided they wanted an excuse to four-point me, and though one of them cautioned that they really had no reason to do so, the other one told him not to worry, “we’ll find a reason.” And as I learned shortly thereafter from accusations of my having assaulted a nurse made by Dr. Michael E. Balkunas, they did so.

 

But just because an accusation is made doesn’t make it factual or true, as we all know, and just because Michael E Balkunas accused me of lying about it, and again when I later informed him about them stripping me and leaving me naked in the hospital seclusion room doesn’t mean he was correct either. He never asked me what did happen. He never tried to find out the real events of that evening, he simply designated me as manipulative and “volitional”  — a “borderline” — essentially a prime-time liar. He had already conceived an intense antipathy towards me, so by the time he finally came by to see me on the W-1 Psych Unit the next day, he had made the decision not to let me communicate by writing. Therefore, his intent right from the start was not to let me tell him what was going on. He decided, from the very first moments, not only not to recognize the desperation and extreme frustration this induced, but to see only violence and willfulness in me. His solution? Punishment and torture. Period.
But I am getting ahead of myself. Michael E.  Balkunas, MD, the director of New Britain Hospital’s W-1, claimed to have been there when the ED incident I describe happened, when the guards said that I just shot up off the gurney and spontaneously attacked Beth, the RN, from behind. But the record does not bear this out. In fact, he never saw me at all on the evening of May 12: all the orders were written by other physicians. Dr Balkunas’s name is not even mentioned until the afternoon of May 13 when it states only that he was at my bedside to evaluate me. Even then, from what I recall, I was so sedated after multiple forced medications, use of four-point restraints and seclusions, that I was unable to answer a single question. Since I could not speak, given the fact that Balkunas too refused me any writing implement the interview was as unproductive as could be imagined possible.

 

I was to be admitted to W-1 on the basis of his judgments from that single brief evaluation, from which he drew the diagnosis that in addition to schizophrenia, I had a probable “borderline personality disorder.”  (He spoke to no one in my family nor my longtime nurse or doctor nor my friends…and he did not even hear from me, yet he drew this snap conclusion on what basis???? And yet it hideously affected my treatment at the hospital)

 

How could he possibly diagnose a personality disorder, seeing me in such traumatic circumstances and for a few minutes only? In point of fact, what likely happened was that he took a disliking to me, and diagnosed me with something that in his mind justified his later egregious treatment of me, and in particular   justified his disallowing me to write instead of speak. I cannot otherwise explain his behavior. Nor can I understand his astonishment at my response when I did not react well to these punitive ministrations. Why did he think I would respond positively? Why did he think that coercion would be beneficial? Did he truly think his “treatment” would be restorative? What I think happened is that he decided he did not like me, right from the moment he laid eyes on me — I may even have been naked in restraints, who knows?– and so he opted, as many men do, for  savage abuse and punishment.

 

But there are policies at W-1 that hurt everyone, not just me.

“I want to explain what “deserving” seclusion or restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut on Grand Street in New Britain) means in 2014. I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion or four-point restraints when absolutely essential, when a patient is out of control and extremely violent, and cannot be controlled in any other way.” Trust me, I know. They have said this sort of thing to me in each and every single Connecticut Hospital I have ever stayed in, except for the “old” Hartford Hospital’s CB-2 psychiatric unit in the 1980s-early 1990s, when Sharon Hinton APRN was the head nurse. I do not recall ever hearing about any seclusion and four-point restraint policy. I know for a fact they had NO seclusion cell, and while I spent many admissions starting out in their “secure unit” what we got there was simply more attention, and more care, not more abusive control.

But what you need to know is that they are NOT talking about some 400-pound man hopped up on PCP, waving a machete. For one thing, that person, I believe is largely mythical, or if real now largely confined to correctional and law enforcement settings. The person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I. I am the rule…The person they secluded or restrained almost without exception at hospitals like New Britain and Manchester and Middlesex and the Institute of Living was none other than me.

So let me tell you about me. I will turn 63 years of age in November. I am 5 feet, 3 inches tall, and until I moved to Vermont, I weighed, maybe 108 pounds on a good day, Furthermore, I have been consistently described as “poorly muscled.” Not only has my right shoulder been recently injured by staff encounters at New Britain’s hospital, but I before I was hospitalized at HOCC I was unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the NBGH/HOCC nurses/security guards knew (they stated it out loud) and used to their advantage when subduing me.

I also want you to know that I am a decades-long vegetarian on the principle of non-violence — and have always believed in non-violence to people as well as to animals. I have opposed the death penalty since I was a nine-year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted criminals as we do. Yet in many Connecticut  hospitals since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either holding me down by brute force, 2 people to each limb and one to my torso (this was at the only 2 hospitals  that did not actually resort to mechanical four-point restraints– compared to the half dozen others that did), they routinely injected me with two to three drugs as chemical restraints (really punishment drugs, as I frequently called them, without anyone correcting my perception) whether they were required or not.

I am the rule, not the exception, I am this supposedly “extremely violent mental patient” who is so O.O.C that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical person they claim they absolutely must have the right to resort to the use of violence, for their own safety and mine.

Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, on W-1 this is what happened.

 

Michael E Balkunas MD, head of W-1, wrote that “while in patient would often scream.” Yet he states with apparent resentment that I had brought items with me “such as a large advanced directive.” The nursing notes repeat this as if this is a bad thing, and then they proceed to disregard every item on it. Not only that but after Balkunas accuses me of behaving with “volition” (whatever this is meant to prove) he never actually adduce any further facts or observations to back up what he means, except that I brought with me the large psychiatric advance directive and a published book of art work I had done.

 

This book of my art, by the way, was deliberately kept from me the entire time I was on the unit, because, I was told it would be extremely harmful for the other patients to see it. The nurses repeatedly reinforced this message: any glimpse of my art would hurt them. This was emphasized to me: I should feel guilty not only for having brought the book with me, but for having drawn the pictures at all. The RNs seemed to enjoy my feeling bad about this….

 

Balkunas further claims in the chart that he repeatedly “asked if patient would like to speak to him, please,” but what he fails to note is that he refused to permit me any possible mode of communication. He also peremptorily walked out on me when I could not utter a word. He notes that, yes, I threw my bed-clothes at him, but fails to mention that he would not acknowledge my gestures or try to figure out what I wanted to say. Instead, he stood up in disgust and turned on his heels and left.

 

I admit that having already been secluded, 4-point-restrained and forcibly sedated in the ED, and then called a liar by the doctor who was supposed to care for me, I was very upset at being unable to make him stay, to make him listen or attend to me. So I did the only thing I could do to make noise of any sort. I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder.

 

This was not intentional. I scarcely recall doing it, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ED, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal.

 

Enraged, his face beet-red, he bellowed at the nurses to order guards to take me immediately to the seclusion cell.

 

“Seclusion! Seclusion! Restraints! Restraints!” he screamed. Before I could do anything or even consent to walk there, I was bodily dragged down the hall by my injured shoulder to one of the most horrifying seclusion cells I have ever seen. There were two cells, actually, each lockable from the outside, completely barren and cold except for a concrete slab of a bench set into the wall, with a plastic mattress on it. Nothing else. No commode, no bedpan, nothing but two cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door across the other room, so I was thoroughly alone and soundproofed from the rest of the unit, and then turned their backs and walked away.

 

I panicked immediately. I urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Nada. Zilch. Not a word. I did not even understand at that time that there was an intercom somewhere that they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I knew, yes, I knew, what would happen, I knew this because it was SOP. It was what always happened to me in Connecticut’s torture-chamber hospitals. But I was freezing in there with the A/C on full bore and at 108 pounds and a history of frostbite I could not tolerate being cold. Furthermore, with neither a watch nor any clock on the wall, I had no inkling as to how long they would keep me there. It might be two hours or twenty, or it might be three days. All I knew was that I could not tolerate the isolation, one, and two, I could not survive the freezing temperature.

 

So I took the flimsy johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it, as if to strangle myself. This was a futile endeavor of course, because I couldn’t keep pulling on it without eventually letting go and then I’d breathe again. I didn’t want to die. I just wanted it to look outwardly as if I were strangling myself so someone would come in to check on me. Then finally I thought I would be able to explain that I was freezing cold and just please please please would someone give me a blanket?

Well, would that anyone were so reasonable! But no such luck…

Oh, yes, the intercom did crackle to life eventually and someone interrupted. “Pamela, take that away from your neck. Now.” I gestured to indicate I was freezing. The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but clearly, “I need something for warmth!”   No doubt you can guess that this was a battle I was destined to lose…as it was designed to be.

 

Eventually, but not so quickly as to show that they had any truly serious concerns about my safety, guards and nurses entered the room, along with a gurney. Grabbing me, injuring my right shoulder as well as my left in the process, they hoisted me onto the gurney. Without even covering my nude body, they locked me into leather restraint cuffs, wresting me into a painful and illegal spread-eagle position, despite my groans of pain and protest. Then to cap it off, they refused me a blanket. Someone tossed a small towel over my private parts and that was all. I was summarily injected with three punishment drugs and an aide was positioned at the door. Then the goon squad trooped out.

 

I screamed in rage for at least ten minutes. The aide just looked away, pointedly ignoring me. When I finally quieted, I tried to signal my desperate need for water and for warmth, but the aide pretended she did not understand me. But she did understand me and when she finally acknowledged my requests, which I mimed with difficulty from the restraints, she refused, stating that a blanket was unsafe, a pillow unnecessary and that it was my own screaming that had made me thirsty.

 

The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to shackle a patient to a bed – or being isolated by force in a freezing seclusion cell has to be universally terrifying and traumatizing. Nevertheless, both cell and/or four-point restraints are quickly employed to curb loudness and “undesirable behaviors” at the Hospital of Central Connecticut on Grand Street in New Britain. I know this because I was subjected to both seclusion and 4-point restraints multiple times in May and June of 2014, despite being admitted with a previous diagnosis of chronic paranoid schizophrenia, and documented PTSD, triggered by precisely these methods of “behavioral control.”

 

Bizarrely, Dr. Michael E. Balkunas wrote on my chart, “Patient mis-perceives her treatment as traumatic.” Well, maybe so, but I think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while shackled to a bed for 19 hours nearly daily, which is what they did at Hartford Hospital’s Institute of Living in the winter of 2013. This was after I was told to lie down and place my own limbs in the leather cuffs (“as a consequence but not a punishment”) for walking away from the very same “Side Room” that I had just been assured was “not a seclusion room unless you call it a seclusion room.”

 

Again, maybe I mis-perceived being grabbed and held face-down and nearly suffocated numerous times by staff at Yale New Haven Psychiatric Hospital in August 2013, where they would twice or three times a day forcibly inject into my buttocks 10 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic mis-perception” on my part? Maybeand then again, maybe not.

 

Nevertheless, the fact remains that in the ED of New Britain’s HOCC, a security guard in May 2014, grabbed me by my left shoulder immediately after he was warned by the nurse that it was my left shoulder that had a rotator cuff tear.

My New Britain chart records that I was admitted to that hospital, (and to the IOL and others) with a detailed Psychiatric Advance Directive, the first page of which states that seclusion, 4-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” My PAD also makes several concrete suggestions how better to deal with me when I am upset and in crisis. Even though I spent many hours on this document, Psychiatric Advance Directives are virtually worthless in Connecticut and doctors can and do ignore them freely.

 

Perhaps because of this, HOCC staff literally forced me (“escorted me”) to seclusion and/or restrained me multiple times. They even had male guards strip me naked “for safety’s sake,” and even though I put up no resistance, they had the same male guards four- point me, separating my limbs into a spread-eagle position – a visual rape they clearly enjoyed — while still naked and shackled me into leather restraint cuffs without even covering me first.

 

Is it any wonder that what resulted was someone who would wash her hair with her own urine, defecate on the floor of her 24-hour-videotaped bedroom and smear feces on the wall? Yet the esteemed Dr. Balkunas, the director of W-1, the general psychiatry unit at HOCC claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic, so he contends. He simply never got the connection between my later horrendous decompensation and this so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either.

 

I moved to Vermont shortly after being released from New Britain Hospital. No hospital in Vermont has felt the need to seclude or restrain me in any such fashion. In fact they do not diagnose me as having any personality disorder either. I have now moved from the Central Vermont Medical Center to Meadowview Recovery Residence in Brattleboro, where they offer residential and unmistakably kind, non-coercive treatment for both schizophrenia, and for the PTSD that resulted from this horrific treatment.

 

My grave concern however is that there are people still being tortured in HOCC’s W-1 unit for General Psychiatry, on Grand Street in New Britain. I did not leave Connecticut just to forget about this. Justice must be served in order for change to happen.

 

I tried to file a complaint through the ADA with the Department of Justice about HOCC’s ED and their refusal to provide me a means to communicate but I never heard back from them, although it is just possible they called my cell phone which has ceased to function…

 

I beg of you to respond to this email. Please help, and please do something to change New Britain’s HOCC use of torture, and the situation at W-1 in particular. Although I am somewhat constrained in Vermont at present, I would assist in any fashion I possibly can.

Thank you,

 

Pamela Spiro Wagner

UNFIT FOR WORK? Or simply Forced to be Disabled?

NPR’S “UNFIT FOR WORK”

The startling rise of disability in America

By Chana Joffe-Walt

http://www.thisamericanlife.org/radio-archives/episode/490/trends-with-benefits

In One Alabama County, Nearly 1 In 4 Working-Age Adults Is On Disability (click below to play audio)

https://wagblog.files.wordpress.com/2013/05/20130322_atc_05.mp3

In One Alabama County, Nearly 1 In 4 Working-Age Adults Is On Disability

 

Expanded Definition Of Disability Created Million Dollar Opportunity For Lawyers

Moving People From Welfare To Disability Rolls Is A Profitable, Full-Time Job

Kids May Stay On Disability If Their Parents Rely On The Check

Americans On Disability Play An Increasingly Important Role In The Economy

Thanks to Donna for pointing out this story at NPR. You can get the written story by Chana Joffe-Walt if you prefer to read it at: http://apps.npr.org/unfit-for-work/

If anyone feels moved to comment on this story or add to the discussion that I started yesterday under the video of Reshma’s recovery from schizophrenia,  and Donna added to with her comments, please feel more than welcome to do so. If I get enough, I will create a new post out of them.

NOTA BENE: if you are a regular or even intermittent follower of Wagblog, and think that you have something to add here, and would like to contribute a post regularly or simply once in a while, please contact me. I am in the process of inviting contributors to Wagblog, but do not know everyone who might be interested in doing so. So if you are a human, and interested, let me know who you are. Send an introduction with your best writing as I cannot accept contributions I will have to edit to the point of rewriting…and umm, we have certain standards here, ahem, ahem, ahem. 8)   

My Psychiatric Advanced Directive — IGNORED at the Institute of Living at my Expense

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.

Pg 2.

HOW TO INTERVENE IN A CRISIS:

DE-ESCALATION IS ESSENTIAL

  1. 1.    PLEASE REMEMBER: I can calm down if YOU follow these steps and do not threaten me, order me around, or approach me in anger or in fear.
  2. I need one person to talk to. I should be approached calmly, by someone who will speak in a kind and respectful manner, understanding that above all:
  3. I AM SCARED and my anger masks fear. I am not dangerous. I WILL ONLY FIGHT IF YOU ATTACK ME. Please remember that any show of force and people ganging up on me to administer forced medication will be felt as an attack.
  4. I can be persuaded to take oral medication, usually, if this is negotiated with dignity and kindness and not by means of threats.
  5. DO NOT ISSUE ULTIMATUMS you won’t back down from…That will push me into a corner and you too, and will serve nothing but to escalate the crisis.
  6. A calm unthreatening and unthreatened person should ask me calmly and patiently if I can speak in a lower tone of voice, so she can hear me better. Ask me if I can take a deep breath and try breathing techniques that will have flown my head in the moment of crisis.
  7. Should you have a COMFORT room available, you can guide me gently to it but do not close me alone. Make sure I am warm…
  8. ABOVE ALL YOU NEED TO BE PREPARED TO LISTEN TO ME. This is not just a matter of forcing medication. Medication may not even be needed if you hear what is going on and what the problem is.
  9. If you take these simple steps, it is virtually guaranteed that the situation will resolve calmly and without any need to resort to the sorts of violence that would permanently damage and re-traumatize me (or produce secondarily negative behaviors afterwards): seclusion, forcible injections, or mechanical restraints or physical holds.

p 3

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.

 Respectfully,

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.

Florida to execute paranoid schizophrenic tonight absent intervention from Supreme Court

Florida to execute paranoid schizophrenic tonight absent intervention from Supreme Court.

 

Thanks to the excellent blog, Dispatches from the Underclass, we have the post above. It is disgusting but true that in some – too many states! – “we” are still executing the most severely mentally ill…

Psych Meds: Are We Crazy to Take Them?

We are broken in so many ways. Here I am naked in the seclusion room in the left lens, and the right lens is broken over the biohazard sign, a symbol that stands for so many dangers…© All rights to this picture are reserved. Please contact me if you want to use it for any reason.

On Medscape yesterday they ran an article/video by a Dr Jeffrey Leiberman, lamenting the failure of three psychotropic drugs –one for the treatment of schizophrenia, and the others  for Alzheimer’s — to pass beyond either phase 3 or phase 2 clinical trials. This is part of what Leiberman had to say (please note that the emphasis is decidedly mine…)

 

“The brain is an organ that is orders of magnitude more complex than any other organ in the body. The brain has 100 billion cells. Each of the areas of the brain is organized cytoarchitecturally differently, and the cells connect via over 30 trillion synapses. Compare this to the heart, the liver, the gastrointestinal system, or the lungs, and there is no comparison in terms of complexity and intricacy. In addition, given the fact that we are developing treatments for brain disorders that affect mental function and behavior, the animal models that are an essential component of biomedical research and drug development are limited, because how can lower species like rodents model the complexity of human behaviors and mental disorders that we are trying to correct pharmacologically?

 

“In addition, the biomarkers we use to signal the effect of the treatment or prove the target engagement of a molecule at the desired location in the brain or protein in the brain are still in development and not fully validated. Thus, the complexity of the brain and the limitations of existing tools make the prospects of certainty in drug development [for brain disorders] more questionable than in other organ systems and disease areas. “Certainly the research community and the National Institutes of Health (NIH) understand the importance of redoubling our efforts to develop treatments for this important group of disorders. The NIH has recently established a new Institute, NCATS, or National Center for Advancing Translational Science, which has as part of its core mission drug discovery and development. In addition, various other Institutes have put out RFAs [request for applications]; this includes the National Institute of Mental Health, which has initiated a series of what are called the “fast programs” to identify drugs that exist within the pharmaceutical industry and may no longer be under development, but can be repurposed for study for specific disorders. A quick, rigorous study using a fast-fail strategy can determine whether these agents have the potential for further development.

 

“New efforts are coming from the biomedical research community as well as the NIH to spur drug development. I hope this will act as a catalyst for the pharmaceutical and biotech industries to not despair or back away from the risk of developing drugs in these areas, but rather to find the resources to support drug-development programs for these disorders.

 

 

“What is the benefit? Anyone who works with psychiatric patients knows that there are tremendous unmet clinical needs, whether in schizophrenia, depression, bipolar disorder, autism, or Alzheimer disease. With these needs come tremendous market potential, so for those who stay the course and persevere, there will be very lucrative rewards .To me, this seems like a great opportunity, and I think our partners in the private sector should appreciate this. I look forward to partnering with them to try and work in a way that uses their precious resources most efficiently but still serves our scientific goals and the needs of our patients. Thank you for listening.”

 

 

Yes, I noted the last statement, that he wants to serve science and his patients, but i could not help but feel great dismay at the other statements, including the first, that largely states what I already suspected: using animals to prove anything about human brain disorders or states of mind is downright ridiculous. All you can say about a rat’s “schizophrenia” is that it appears to  “behave” in some fashion that looks similar to someone who is psychotic…but how would you know if a rat is psychotic, or hallucinating or thinking in a delusional fashion?

 

Come on? How would you know if a rat had negative symptoms of schizophrenia, or was depressed, or simply felt lethargic because  it was hungry or drugged or sleepy or some other physiological reason. Well, you likely could not! Using animals that can not communicate with us to model human mental functioning is downright silly, and yet it seems to have only just occurred to Dr Leiberman, perhaps in his own disappointment with the glutamate-dampening anti-schizophrenia drug that just went bust…I dunno.

 

 

Once again, having read about how they are using Ketamine to treat 6-12 years olds with bipolar illness (mind you, I am not convinced that the children are actually Bipolar, only that more and more kids are being diagnosed because conveniently shrinks are allowed to drug them with Abilify and Seroquel and other adult antipsychotics and the drug companies push it on them, pay them for using it etc)

 

 

I believe that the use of psychoactive drugs and the rampant use of them is more often inappropriate than not. Truly.   The very idea that Abilify and Seroquel are prescribed willy nilly for everything from insomnia to mild anxiety is just plain SCARY. Has anyone out there taking these drugs even bothered to read the side effects, or do they no longer care what they are taking? Obesity no longer scares anyone, but what about diabetes and high blood pressure, nope, I guess not, since those are epidemic too.

 

 

It truly astounds me how both  those drugs, not to mention a whole host of other powerful drugs are being pushed on the American public, but we are a public that LOVES to take drugs rather than deal with problems by, well, looking at ourselves and thinking about what our responsibilites are and how we might change things…and doing some hard work and hard thinking about things…No, god forbid, why not just take a pill and forget about everything else, and if the pill doesn’t do anything, well, then, probably we are incurably ill and need to take those useless pills for the rest of our lives, because if we didn’t take them we might might might be even worse than we are taking them, right?

 

 

Not! Why do we take drugs that don’t help us, or that we do not notice any benefit from (though the shrinks are always willing to point out to us how much better “you are feeling”), drugs that might even make us feel worse in other ways.

 

 

Some people who are depressed lose all sexual enjoyment and functioning from their antidepressants, but refuse to stop the drugs because they are afraid…even though the drugs themselves make little difference in their mood, but their lack of sexual pleasure and responsiveness surely has…in a negative way. Why do they continue taking the pills? Hope? Obedience? Uncertainty? Perhaps all three…They may hope that if they take the antidepressant just a little longer, the side effects will “go away” as their doctor likely assured them, and they naturally want to be an aobedient and good patient, so they keep complying. And of course, depressed as they still are, uncertainty about the future plays a huge role, since how do they know that things wouldn’t get even worse, should they cease taking these pills that the doctor says not only will help them but somehow noticeably is helping them, whether they feel it or not.

 

 

Argh. I am reading a book, Rethinking Madness, by Paris Williams,  PhD. and it is a very interesting take on psychosis and the treatment of it. He suggests that it is NOT always a lifelong condition, or that one breakdown means that one needs to be on medication for life, or in fact that even with repeated psychotic episodes, one can be on intermittent medication and at low doses. I have difficulty reading, myself, so I have not read far along, but the first case study discussed a man who became psychotic suddenly in the late 60s or early 70s when he was threatened with the draft. After that he was ill for a long period of time, in and out of madness until he met the “right doctor” at age 28 or so. I believe it was then that he made the slow transition off all medication and since he was 35 or so has been off meds altogether. And has been well. Recovered, in every sense that matters, completely.

 

 

Everything about his history would today dictate that he never be taken off meds, and would mitigate against his ever dreaming of working in the mental health system, let alone as a worker in a state hospital. Yet this is where he has been employed for many years…(I may misremember some details, but that is the gist of it.) I could scarcely wrap my mind around such an outcome…it seemed that amazing.

 

 

Yet, I cannot be envious, because I know how often I tried to get off my medications, and because I did not know how, I likely induced a recrudescence of psychosis without even understanding that was what was happening. And naturally, they put me back on the drugs again…It was not my fault, just how it was in those days. I didn’t know, and they still don’t! Even now, though, I do not know if I could get off the meds.

 

 

But in my case, I am not sure I want to, largely because I function so well on them. I write, I do art, I sleep well, I am not obese, I have no chronic physical health problems because of them…So I have no pressing need to get off the antipsychotics, nor the anti-seizure meds, which I may need due to temporal lobe epilepsy anyhow. I would like to get off the sertraline, yes, and we are working on that. But why fix what ain’t broke at this particular time? I mean, I only got out of the danged hospital a month ago, and it would seem a little, er, crazy to fiddle with things this soon, much as I wish I could. On the other hand, I don’t mind taking these meds, because by and large, I believe, frankly, that my body has re-established some kind of homeostasis and has adapted to the lowered dopamine…so it has ramped up production to a different balance, meaning that I am fine where I am, but would risk a massive overload should I stop cold turkey.

 

 

OTOH, I do not yet understand the absolutely immediate improvement in all my mental capabilities when I take Zyprexa. Yes, I eat and eat and eat. But I can read and pay attention to people telling me things to movies and the TV and just “intake” in a way that I cannot now and have not in years…And it is literally within 2 doses. That cannot be a matter of homeostasis so what is it? Can Zyprexa be the ONLY drug that actually has some beneficial effects? I doubt it. So what is it?   Anyhow, any comments on these points would be appreciated. I don’t mind if you want to argue to the contrary, if you feel it strongly. I am here to hear different points of view as well. Though you know of course that I may “argue” with you back! All in friendship and good cheer.

A Mental Health Meeting of the Minds: Natchaug Hospital Administrators Get Gold Stars

This is the front entrance to Natchaug Hospital, a photo I cribbed from their Facebook page. I am trying to paint it, but that will take a while so for now, this will have to do…Hope I am not infringing a copyright. However, as this post is all about Natchaug it is good publicity too!

After I wrote my early September post “Open Letter to Deborah Weidner MD”https://wagblog.wordpress.com/2012/09/02/open-letter-to…chaug-hospital/  ‎about my stay at Natchaug Hospital in August, I received a phone message  one Saturday afternoon not long afterwards from none other than Dr Weidner herself. She left her cell phone number and asked me to call her back. Her voice was neither angry nor upset, quite the contrary, she sounded very pleasant. So, despite my heart’s clangor in my ears at the same time as it drove nearly into my esophagus with its nervous pounding, I sat down and decided to make the call “without further ado.”

“May I speak to Deborah Weidner?” I asked the voice who answered, intentionally using her first name, so she would not think I was calling on unequal terms, i.e. as a patient.

She responded, and addressed me as “Ms Wagner,” which made me feel better at once. Then, before I said a word, and believe you me, I was not going to be the first to speak in any event, she said (and I quote from a less than perfect memory here, so this is not verbatim), “I read your blog post. You are such a gifted writer. It was really a wonderful piece…” Or words to that effect.

I was both stunned and amazed. Certainly I was amazed this was the self-same “head honcho” who had essentially, so I’d felt in August, been against me at the hospital along with so many others in charge, the MD who had – I felt – given up on me, called me “a borderline”*** and gotten rid of me at the earliest possible opportunity. She could, back in August, so easily have tried to help, tried to find out what had gone wrong and make things better. But it seemed to me at the time that she had simply gone along with the general ill-will towards me and dumped me, no matter how troubled I still was.

Note that when I say, “general ill will” I mean exclusively “the management” — the doctors and social workers and APRNs…those who did the diagnosing and disposing. From the nurses and mental health workers I felt nothing but great support and goodwill, almost to a one (minus, of course, my abusers). Even of the nursing supervisors I found only that single really awful one…at least to my face.

But as for Dr Weidner, I’d felt that she too had decided to “blame the victim” instead of taking responsibility for the very real traumas, which certain “bad egg” hospital staff had inflicted on me…

However, be that as it may, it is all water that has sluiced beneath the bridge, and so as I said, I was stunned to receive Weidner’s phone call. I was even more astonished to perceive such humanity and even warmth from this woman against whom I had conceived such animosity and from whom I had felt the same.

Here she was not only praising my writing skills but speaking approvingly of a blog post that concerned my very negative month-long stay in “her” hospital.

We talked for a while. She may not have known it but I was trembling, both with anger and with anxiety. It took me some time to calm myself, to feel safe enough to answer any of her questions. Finally, she said what she evidently had called about to begin with. “I wonder if you would consider coming back to talk with me and a few other interested people here at Natchaug.  I would really love to speak with you.”

I was dumbfounded for a minute. But only for a minute. Then I found my voice, and as soon as I did, I responded with enthusiasm. “Yes, absolutely. I would love to do that. Thank you. I would be more than happy to speak to you and anyone else who would listen to me.”

“Thank you, Ms Wagner. We really want your input, we want to make Natchaug a better place and I think your insights can help us to do that.”

After we hung up, I was beaming. I felt so filled with light that my smile must have been big and bright as a beneficent Halloween pumpkin. I immediately went downstairs to the 7th floor to share the news with my friend of 30 years, a friend who had been appalled when I came home in August in such terrible shape.

_________________________________________________

Well, that meeting took place yeseterday, Friday, at 9am. Brityn, my case manager drove me out to Natchaug, and I brought with me the oil pastel painting I’d done while there, the view of the nurses station from my room. I am donating it to the adult unit mental health workers’ breakroom, after Brian, the patient relations advocate, who is both intelligent and caring and an extraordinary listener, displays it somewhere publicly for a time.

When we got there, we were met by the director of nursing, John O, APRN. Shortly thereafter Dr Kline came along and we went into a little room off the lobby. I was a  taken aback at first when, while waiting for Dr W,  John and Dr Kline started talking with Brityn, as if she were the only person in the room, as if, “professional to professional,” they could ignore me, a mere patient once again.

This was unconscionable. I was the person with whom they ought to have been concerned, and instead they directed themselves wholly to Brityn. It also felt infantilizing. Why didn’t they even greet me or ask how I was doing since I’d left Natchaug? They could have at the very least made small talk with me. Instead, they chatted with Brityn, someone who is not only my junior by about 30 years, but with whom they’d had no prior interactions whatsoever and whom they didn’t even know. It was insulting.

I dunno. Maybe I was too sensitive. Maybe they just wanted to include Brityn…But it didn’t feel that way to me. It felt like they were talking to her as a way to avoid talking to me, a way to simply bypass chatting with me.

To their credit, however, when I mentioned it – “You know, I am here and I am a person too. You could at least include me in the conversation…” — they apologized. But even now I do not believe they understood the problem. They thought it was perfectly acceptable — since Brityn had driven me (I wonder how they would have behaved had I simply been able to drive myself!) — to treat me as merely a patient, a “charge,” and to treat Brityn as their equal, the other professional, the only one on equal standing with them. Well fork them…It cost me a lot to go up there, not even to talk about what they did to me. Do they really think I am OVER it? They ought to be ashamed of themselves.

But I will let that go as well.

Soooo, down to tin tacks, which turned out to be the golden glue of the meeting itself.

Dr Weidner, small and blond and –somehow I want to call her “open-faced” — she seemed not to hide a lot, had what looked like a genuinely interested and caring face, though naturally psychiatrists are trained to achieve this appearance. Nevertheless, I did trust her sincerity.

This time I cannot recall if she called me Pam, or nothing at all. I do not think she called me Ms Wagner, though.  I pointed out that since I understood that the post I’d written, the “Open Letter” had essentially “gone viral” in terms of the Natchaug Hospital staff itself, I didn’t feel I needed to talk much about what had happened in August. I had written all about it in detail. Or most of it…Mostly what I thought I should talk about was “How to make Natchaug a better place.”

I did that, and in fairly great detail. I will write a separate blog about all those suggested changes, and changes which would apply in spades to other hospitals. But for now, I just want to report on the meeting itself.

Dr Weidner seemed to take careful notes  and when I had finished I was simply “blown away” when she said, “Pam you have so much to tell us, and are such a good teacher, but there are only the three of us here today. How would you feel about coming back and talking to the entire medical staff? Your experience as a patient and your ability to articulate it would be just invaluable for many more of us to hear.”

Well, I almost laughed in sheer belief and pleasure. “Of course. I would love to. I do public speaking and would have no problem with that. Anything at all that I could do to make Natchaug a better place would be fine with me.”

Dr Weidner also wanted to know what they could have done to make my own stay less traumatic “from the start,” especially how they could have relieved or prevented my becoming mute for so long.

I told her that from the instant that the first episode started, when that nurse or whomever said to me, “Take your hands out from under the blankets!” I felt so betrayed, felt indeed that I was back at Hallbrooke being tortured by those two abusive staff members (who were actually reprimanded for their behavior) that I became mute at that very instant.

Would I have taken Ativan despite my psychiatric advance directive’s proscription against its use? Yes, had someone gently explained its use and suggested I take it to help my mutism, just a small dose, I would have at least considered it.

But no one presented  Ativan as an option…I do not believe anyone even knew about it. Except of course to force it on  me against my will during the Seclusion event I described in the earlier post. Not until Dr Cappiello insisted that I ask Dr Pentz to prescribe it, and that was only after I had been unable to talk for 8 days.

As for the mutism itself? They — Dr Pentz and some of the other docs and APRNs — insisted that I deliberately chose not to speak, that I could have if I wanted to. But in point of fact, I could not get myself to speak, I woke every morning with no “inclination” to speak and no felt ability to break that barrier…and therefore I truly could not speak at all. In fact, it took hours, and maybe two doses of Ativan before I was able to speak at all even when I did take it.

After a few more words of conversation, the meeting broke up and Brityn and I headed towards the car, with the expectation that we would come back again so I could speak to a larger group of Natchaug personnel.

So that was my reconciliation with Natchaug and I left feeling like a million dollars. Even Brityn told me it was the best appointment she had taken anyone to that week.

You know, my sole worry — and I felt a frisson even as we talked about it and my worries were not immediately allayed — was when I asked if I could ever be readmitted, ie as a patient. I know, I know, why would I even want to? Dr Weidner said she didn’t think I’d ever want to come back. According to her, that’s what I’d written in my blog post. But in  fact, what I said was that I didn’t think I would ever be taken back. I was considered such a PITA, why would they want me? And also because I could not see anyone for a doctor but Dr Andrei, and it seems dubious that she would see me. Why I do not know. But so be it. I liked her, never had any problems with her. But I must have done something wrong. This is twice that they have refused to assign me to her.

In truth though, 1) I have NO WHERE ELSE TO GO, no where else I could possibly begin to trust or feel safe, nowhere do I have even a history of feeling and being safe and 2) say that they do change, where else would I want to go?

In any event, since I can work with neithe Pentz nor the other doctor on the unit, because of “conflicts of interest” (i.e. he still has “feelings for me” from our days in med school together) that leaves only Dr Andrei, and I dunno if she would accept me onto her service. So, even if theoretically they would take me back – which didn’t seem at all certain, not from the vibes I got from Dr Weidner — I don’t have any idea who could see me if I were admitted.

(What the fork!  I would be stuck in a snake pit like Hartford Hospital’s Institute of Living only to be brutalized again. When push comes to shove and I might need or want to be re-admitted, frankly I wouldn’t expect the admitting MD Natchaug to give a damn, no matter how many times I’d spoken to people there and how much I might have taught them. As soon as I need their help as a patient,  frankly, I expect I’d simply to be abandoned to my fate somewhere else.)

Well, of course I will still help Natchaug,. How could I not want to help them? I want to help EVERY hospital in the state become as good as Natchaug and even better. But it sucks all the same.

———————————————————————————

*** Finally I want to make a brief comment about the specific words “a borderline” used early in this post, because every time I hear this phrase it makes my blood sizzle. Not only is very insulting, it stigmaties. I may not have borderline personality disorder, but I know what is meant when someone calls a person “a borderline,” and it is invariably  takes the place of PITA, Pain in The Ass.

There is a difference, a huge difference between understanding the very real travails that a person with such a personality disorder undergoes daily, the emotional suffering that afflicts that person, and simply calling them names because you find them troublesome.

Empathy goes a long way, especially with someone who suffers from BPD. The idea of calling someone “a borderline” is tantamount to saying, “I suffer from YOU.” A disgusting statement if ever I heard one, one most often made by mental health professionals. Doctors who use the words, “a borderline” need 1) re-education in language and its nuances, but 2) and much more important, a re-education in COMPASSION.

Of course, that’s just IMHO…and who am I?

I’m Nobody! Who are you?

by Emily Dickinson

I'm Nobody! Who are you?
Are you – Nobody – too?
Then there's a pair of us!
Don't tell! they'd advertise – you know!

How dreary – to be – Somebody!
How public – like a Frog –  
To tell one's name – the livelong June –  
To an admiring Bog!

Open Letter to Deborah Weidner, MD, Chief Medical Officer, of Natchaug Hospital

It has been a week since my discharge from the Adult Unit at Natchaug Hospital. After a week of recuperation and stabilization at home I feel compelled to write you via the open forum of a letter on this blog. It may or may not get your attention directly but I feel certain it will be read by someone on the Natchaug staff. Perhaps that way it will eventually reach your eyes. If not, so be it.

Our encounter on Monday the 27th of August was extremely brief and not particularly noteworthy. While I have much to say that never got said then, I owe you nothing, and by the same token, expect nothing from you either. That said, to any of my readers who want to understand the intent: I write partly in my defense against what I feel were gross misunderstandings (leading to unnecessary trauma), and partly to record publicly – on record as it were – what really happened over the last 4-6 weeks.

Please, Dr Weidner, or any other reader: Do not dismiss this letter out of hand as the peevish complaints of a disgruntled but troublesome patient. I understand how you might be tempted to do so, especially because you — or at least Dr Pentz and Lisa H. APRN – claimed in their infinite wisdom to be able to detect signs of an Axis II Borderline Personality disorder (despite the concomitant presence of an Axis I psychosis ). I know that labelling me “borderline” was always just another way to dismiss me and my concerns as “mere,” that is to say as meaningless or manipulative, the “mere” attention-seeking of a manipulative PITA*.

Nevertheless, it ought to have been obvious, it ought to have been needless to say — but clearly was not — that no one could possibly know what my baseline personality was like from the past four weeks at Natchaug nor in fact from any of my past four stays there. What was clear to many early on, including me, was that this hospital stay at Natchaug abounded not in norms but in extremes, from start to finish, extremes I might add both on my part and on the part of hospital staff as well.

My friends and family know that I am not generally someone who has screaming fits or throws things or strips naked and parades around in public, all modesty thrown to the wind. So too, Natchaug staff: So far as I knew or had seen since 2010, they rarely became physical with patients  and not once in all the times I had been there had physical contact devolved into anything even resembling a fight or violence. Instead, kindness, compassion and empathy were the primary tools. The best staff were as slow to lose their tempers or act on negative emotions as a live gecko was to do a cancan under the noonday desert sun.

I knew those things, and until August I believed it automatically made Natchaug a superior place, a sanctuary immune to the sorts of failings I’d found in so many other hospitals.  That was why I insisted on coming back to Natchaug this time even though it meant waiting two and a half days at Windham Hospital Emergency Room, never moving off the gurney in the barren cubicle I was placed in, monitored by a camera not so subtly hidden in the large TV screen. I knew of no other hospital where I could be safe, both from myself under the influence of command hallucinations, and just as important, from any staff impulses towards the use of violence to achieve control or discipline.

How could I have known that from the first morning after I arrived, staff behavior was to be stunningly “un-Natchaug-like,” as erratic and extreme as my own would turn out to be. My entire stay was in fact characterized by physical assaults by staff, punishment and trauma that began the moment I woke up that first morning.  I responded poorly to this, as anyone might, by regressing into more and more primitive behaviors. But how did “you,” that is to say, the Natchaug staff, respond to me? Not by taking a step back and seeing how things could change for the better. No, instead, you, they decided to blame the victim, to say, “She’s misbehaving, she’s ‘doing these things on purpose,’ she is volatile, unpleasant and emotionally unstable…” Et Voila! There I was, diagnosed, improperly but officially with “Borderline Personality Disorder!”

As many of my readers know, I have written extensively here, at wordpress.com, Wagblog, about psychiatric units and hospitals and have until now always held Natchaug in the highest esteem. Natchaug was always the gold standard, the touchstone against which all other Connecticut hospitals were measured. I believed that Natchaug had the right ideas, the right philosophy about patient care, hired the right people and trained them properly. I trusted that the hospital understood the critical importance of trauma-informed treatment. Ever since my 1st hospitalization at Natchaug in December 2010 -January 2011, when Sharon Hinton was director of nursing, I felt I’d found a truly safe place, an asylum in the best sense of the word, where troubled patients would never be brutalized by staff more bent on coercion and a lust for power than compassionate care.

I have been hospitalized at Natchaug four times now. The first three times bore out these high expectations, but this last time was unmitigated disaster, revealing how much things have changed, and how, under the auspices of the wrong leaders even Natchaug has been willing to permit a few “bad eggs” to damage patients with impunity, rather than take an honest look at burned out employees – including those at the highest levels, RNs and psychiatrists included –keeping them tenured out of a misplaced loyalty, refusing either to re-educate them or to remove them from direct patient contact.

There were three separate instances of physical violence to which I was subjected  between July 31 and August 27th . The very first morning after I had been admitted and placed on one to one for safety, I remember I sleepily turned over in bed and scrunched down again to catch a little more sleep when the person sitting with me suddenly insisted that I place my hands outside the covers where she could see them. This was a strange request, since they had been under the covers all night, right up until that second. Dumbfounded, and freezing cold, I resisted and ignored her, fairly certain that she would not make a federal case of the request once I fell asleep. Instead, she repeated herself, louder and louder. She actually approached the bed and tried to bully me verbally into putting my hands above the bedclothes, telling me that being on constant observation required that my hands be visible at all times. This was news to me. Never in my experience at Natchaug had anyone required such a thing. I continued to resist, though any impulse to sleep had left me by then. By this point, it was strictly on principle.

Well, she was intent on winning the battle and instead of negotiating a solution called in reinforcements in the persons of two male mental health workers. Unable to verbally force me to uncover myself, they initiated physical contact, attempting to pry my blanketed fingers away from the blanket in which I had wrapped myself. The female stood aside, but continued to threaten to deprive me of all coverings if I did not comply with her order. The tussle went on. I vehemently kicked at them whenever they laid hands on me, though I spoke not a word the entire time. At last, they gave in and left me alone. I never found out why. Perhaps they saw the brutality they were inflicting on me. Or perhaps they were called off. I do not know. All I know is that that particular rule was never again inflicted on me.

After they left, and a new sitter arrived, I lay in bed, breathing hard and feeling bitterly betrayed. What the F just happened? Dismayed and disappointed, I could scarcely believe I was really at Natchaug and not at the torture chamber in the south eastern part of the state again. The consequences of this betrayal left me physically and psychologically speechless. What had happened to “my” Natchaug? Try though I might to let myself talk, I remained mute for 8 days.

I won’t go into the long and involved story of the second assault, except to say  that it involved  poor judgment on the part of my social worker and evening nurse. OTOH, an assertion of power by another nurse assigned to me nearly twenty four hours later was overkill and an act of punishment and revenge. She can deny it left, right and silly, and maybe her RN superiors believe it, especially because they have a stake in it. But I know contempt and the smile of sweet revenge when I see it, and I knew the enjoyment in her smile that Wednesday. Assault #2, which involved a rather violent physical altercation and restraint, nevertheless had a bearing on assault #3. What follows is the story of that third assault on my person. In places I quote almost verbatim from my journal entries, which I wrote at the time. When I am not quoting, I assure you that the account is very similar to the journal’s “horse’s mouth” and merely states the same things I wrote there, but with better words and fewer punctuation marks.

I do not remember how it started. I suspect I had been screaming or yelling about something. All I know is that the RN Supervisor for the afternoon, a woman I will called Dee came into my room after my upset and just stood there. At one point in her obdurate silence, she accused me of an unprovoked attack on it the nurse, Kay, who had taken revenge on me the day before. She called Kay one of her “ best nurses.” Incensed at this I assured her she didn’t know the whole situation. When she said she knew enough, I told her to leave my room.

“I’m staying right here,” she said giving me a baleful look. I pointed out that I already had a 1: 1 and did not need a 2nd person in the room. She only continued glaring at me.

“Get out,” I screamed, “get out of here!”

No response. No reaction, except for a slight recoil from the loudness of my voice.

I threatened her then. I admit it and I am not proud of it. I threatened her. I took up a box of crayons and looked as if to hit her. Everyone cried out, “No, no, Pam!” And I put it down. But I continued to cry out, “Leave! Leave! Leave me alone!” She only stood her ground and stared.

That’s when I lost it. I picked up a chair and threatened to throw it at her. This is what she’d been waiting for. She could’ve laughed or made a calming gesture or simply backed away and let the mental health workers gently disarm me and all would’ve been well. But no, Dee liked to escalate rather than de-escalate, so she yelled out, “Escort her to the quiet room!” Before I could offer to walk there myself, Brad and someone else picked me up by the armpits not even allowing me to walk and dragged me.  Because they didn’t even ask me if I would walk freely, under my own steam, I fought them, twining my legs around  theirs as if to try and trip them.  Then to add insult to injury they dragged the blue therapy chair out of the room instead of leaving it there for me to rock in and calm myself. Now, inside the tiny, now empty windowless cell, despite the bright mural painted on the walls, panic rose in me. I looked around, remembering how Sharon had assured me that no one would ever leave me alone in there unless I wanted them too. I begged Dee for someone to stay in there with me. Sarah the mental health worker saw the panic and offered to, but Dee was furious and ordered her out.

“No, she is to stay in here alone!” She made everyone leave, and following them out, she slammed the door shut behind her.

I was horrified. All the memories of locked seclusion returned to me in an avalanche of terror. In my mind, memory told me it would make no difference if I went to the door to beg to be let out, or for a blanket or someone to talk to. Experience, all my long experience had taught me: there was to be no mercy no help nothing would change no one would respond no help nothing no matter what I did. I was and would be abandoned to my punishment until–well–until I had no idea how long it would last. No one told me a thing. Utterly terrified, instead of banging on the door and begging for release, I backed into the farthest corner. I wanted to meld with the wall, shrink back into the wall board as far away from the room as I could get. A howl climbed my throat. I tried to hold it back but I could not. When I screamed, I screamed not to anyone or for anyone but out of sheer mortal terror, the sort of terror that any animal must feels when its leg is smashed in a trap and knows his life is coming to an end. Screaming brought no relief though. Screaming brought nothing, it certainly brought no one into the room to help me. There was only thing I could think of that would that bring relief and that was to relieve myself. So I did, in the only way I could: I stripped off all my clothing and peed a huge puddle of urine on the floor. I had to. I do not know why. Removing my underwear I found inside the crotch a forbidden pencil. I’d not been allowed writing utensils for eight long days and just that afternoon I had used this pencil to sketch my first portrait since I’d been there. I wrapped the pencil in my clothing, knowing that if someone saw it they would confiscate it again.

Too late. A commotion behind the door and they were upon me, all of them, wrestling my naked body to the floor and prying the wad of clothing from me, smashing my glasses in the process so that one lens came out of the frame.  In the melee, someone grabbed my medical bracelet right off my flailing wrist. They pinned me down. I knew what they had in mind. IM meds. But no one had offered me oral medication. “I want oral meds. I’ll take oral meds you can’t inject me, you haven’t even offered me oral meds.” I asked for Zyprexa. Not Haldol or Ativan but Zyprexa, the PRN I had on order.

They refused to get Dr. T, who signed off on the seclusion without ever seeing me, to change the emergency meds — which I didn’t really need but which were going to be ordered anyway, as a mater of course — to Zyprexa despite my psychiatric advance directive distinctly requesting no benzodiazepines of any sort. However, fearing any further confrontation, I swallowed the pills. Everyone got up and left except for the nurse supervisor. I stood up and surveyed the room. Urine ran everywhere.

“How can I stay here?” I asked her. “There’s pee all over the place.”

She surveyed the wet pads and floor. “Deal with it,” she said, and walked out, locking the door behind her again.

I was spent. There was nothing left in me to fight or scream or object. I simply lay down on the mat, amid the puddles of urine and curled up in a fetal position. Sleep never came; it was too cold for that. I just lay there, eyes open, my naked back to the window. 10 minutes passed. 15 minutes. I heard the mental health worker at the window ask the supervisor if she could let me out. “She is lying there calmly, I think she’s sleeping.”

“Give her another 10 minutes,” was the reply.

Another ten minutes went by and another.

The mental health worker kept asking if she could let me out. Finally, about an hour later, the door opened and Sara entered.  I didn’t bother to turn over or look at her. I scarcely raised my head.

“Pam?”

In a dull voice, I answered the requisite questionnaire, as if that were adequate debriefing. Then two other staff members attempted to clothe me in hospital issue johnnies, one over my front, one to cover the back. I allowed them to do this but as soon as they let me go and I was free to proceed out of the erstwhile “Comfort,” now Terror Room, I ripped off the johnnie coat covering my naked backside, and walked half-exposed to my room, deliberate and uncaring. Who gave a fork? What could they do to me now? What could anyone do to me? Fork everyone! They were dead to me. I was dead to them. It was over. It was over. I was dead meat. Just meat. I didn’t give a fork about anything.

More than any other incident, this one was the last straw. Whatever repercussions I deserved for threatening the RN supervisor that evening, however evil I felt for being the devil, there remained in me enough human pride to resist such treatment, enough to say that even I did not deserve to be treated as harshly as Dee had treated me. Not only did she deliberately test me, she lost her temper and I was her victim. I have reason to believe that most of the staff members who witnessed what happened that night believed she went too far. Some would actually say so in as many words to me, though others were cagey and feared repercussions should it get back to her.

All I knew was that I’d been treated like an animal. What did that supervisor or anyone else expect in response? Did she really think I would become docile and obedient, chastened, a meek and compliant patient?  Violence begets violence. It always does. From then on I was not the same. I was not better either, no. I grew markedly worse, and worst of all, no one could predict anything about my behavior. No one knew what would happen next, what I would do, when I would lash out or scream or throw things or push someone or even hurt myself…None of those behaviors were “me” or even close to my usual, or baseline, but I reiterate: what do you expect: treat a person like an animal, and you can pretty much count on getting animal behavior as a result.

Dr. Weidner you do not know me. Paul Pentz, for all his discharge summaries and “progress” notes (the pages of writing are all boilerplate, meaningless, and/or second or third hand information for the most part), he doesn’t know a damned thing about me. I tried to let Lisa H, APRN, know a little, but by the time she was involved in my treatment, you were all so intent on seeing in me this mythical borderline personality, instead of a person who had been acutely and brutally traumatized at your hospital, that it was useless for me to expect anything.  For all Lisa’s pretence of understanding, she had made up her mind about me before she met me. She was largely deaf and blind to everything I said that did not fit the tidy diagnostic picture: schizo-affective, with a concomitant borderline personality disorder. How convenient that you could chalk all the unit troubles up to my problem, rather than seeing it as something your hospital staff created! Blame the victim, why’ncha, instead of taking responsibility for a number of incredibly poor judgment calls on your own or your staff’s part?

Of course as many people have asked me, why do I care what you or Paul Pentz or Lisa Harrison think? Well, I do not, in fact, give a flying femptogram… Mostly I care about the decent people there — the mental health workers and the nurses who did like me and made it obvious and treated me very well and made it clear they would welcome me back (though I can never return, not now.) About Pentz and Harrison and the others I could give a ratzass.  But I do, or did care about Natchaug itself, once the gold standard, for me at any rate. It was the one place where I could tell other people, “Go to Natchaug – I know people will take care of you there, people will care about you there, that’s where people will treat you well.”

The even bigger tragedy is that if no one is safe from the hospital staff at Natchaug, then the likelihood is that no one is safe in any psychiatric unit or hospital in Connecticut. Let’s face it. Not much progress, perhaps none at all, has been made since the Hartford Courant’s series of articles in 1998 called “Deadly Restraints.” My sense is, in fact, that since Mnanaged Care took over medicine, things are actually a great deal worse…Oh, sure, I was not four-pointed during the past stay at Natchaug, no they managed not to become that brutal, so far… but I was physically restrained and manhandled during all three incidents and I have been four-pointed at nearly every other hospital in the state up till 2010. So I would hardly say that that practice has gone by the wayside. In fact, in the Hartford Hospital Emergency Room back in July of this year, they threatened to four-point me just for making a nuisance of myself and being noisy…

So much for not using restraints. As for not using them as punishment? I believe that in every single case when I was subjected to four-point restraints from 1980-2010, they were used as punishment, as a convenience or in revenge… I state this categorically: that not in a single instance were four-point restraints ever truly necessary to keep me safe. They were only used because they were available and the culture on the unit permitted the employment of torture to control and discipline patients. Period.

Seclusion? This practice has only increased in usage so far as I can see. The difference is only that staffs are careful to call such barren quarters the Time-out Room, and are rarely apprised as to the legal definition of either seclusion or restraint. (BTW Time-out is a disciplinary measure used to train children to behave properly…since when did psychiatry decide that patients in adult units ought to be treated like misbehaving children and sent to time-out rooms? If you want to talk about empowering patients and not infantilizing them, you do not in the next sentence tell someone to go to the “time-out room” and stay “until I say you can leave.”).

What you, Dr Weidner et al, think about me in the end is of little consequence. I know I do not have BPD and so do the people around me that matter to me. If I care about anything having to do with Natchaug it is not your opinion of me nor your judgment or your diagnosis, I care about Natchaug because while it could and should be, it is no longer a place I trust, a place where I can direct other people for safety and compassionate treatment. Because if I am not safe from myself at Natchaug, if I am not safe from the staff at Natchaug, and I mean by staff, the doctors and nurse supervisors as well as any “rogue” RN  or MHW, then no one is safe at Natchaug and no one with mental illness is safe in any psychiatric hospital or unit in Connecticut.

That, Dr Weidner, is by far the worst tragedy of all .

___________

*PITA = Pain In The Ass

Useless Psychiatric Mediation and a Poem

(Before I write this blog entry, I want to send this message:To certain people from Middlesex Hospital who read this and are following developments in my case against you please be aware that I know who you are and I am watching you. You do not and will not get away with what you did nor with what you are doing now.)

That said, let me tell all the others of you out there what happened at the mediation- meeting-that- wasn’t, this morning at Middlesex Hospital.

As you know, I have been wanting this meeting for a long time, but when I got there not only did I discover that they were playing the game of “Oh, I had no idea that you wanted a mediation meeting, I didn’t know what this meeting was about at all…” but that the CEO had actually cancelled on last Friday the people that he had arranged to meet with me.  So in fact the only people who came were administrators, not anyone who had treated or dealt with me on the unit itself, except the doctor who saw me for the last 11 days of my 6 week stay. He may have been the director of the unit, but he was hardly the main doctor I saw, despite what he claimed.

Anyhow, the meeting was extremely  — well, first of all, it was largely a waste of time, because NOTHING was said of interest to me. Except that Dr Grillo, the unit director, after I read what follows, actually had the gall to claim that restraints were  entirely appropriate…He said nothing whatsoever about what they did to me. OTOH, I can understand why. After all, he had already been told that we were writing the Department of Justice and the Joint Commission regarding his unit, so he must have felt supremely threatened. Naturally he could not have admitted wrong- doing. Not that any god, excuse me, doctor that I have ever met has ever admitted doing anything wrong or ever apologized. God forbid, a doctor apologize! No, that would be too hard and too demeaning for them to ever do.  Better that they go along and permit torture and abuse than that they admit that there was wrong done to a patient on their watch, much less that they personally even made so small a thing as a leetle eensy meestake…

Well, I know what they did to me and I know it was abusive and wrong, and so far, except for Dr Grillo and that lot, NO ONE I have ever met outside of Middlesex Hospital has ever ever agreed with him and said, Yes, in fact the use of restraints was proper and necessary, and they were right to do what they did to you.

So take that, you watchers from MH. I hope you tremble in your boots for torturing me so. Because you never apologized, and wouldn’t’ meet with me to talk about it, it serves you right whatever happens now. I came down there today , and it took all the courage I   could summon up to do so. I came down there, after two nights without sleep, just to meet with you and talk about what happened on April 28, 2012. But you couldn’t be bothered to deal with me, and so now you will deal with the DOJ and JCAHO. And too bad for you if that means that heads roll and some of you lose your gd jobs. I do not care any more. I tried, I tried to reconcile and talk with you about it, but you didn’t have the courage to do so, you wouldn’t deal with me, and so now you can deal with the powerful ones, and not me. Now I don’t give a damn what happens to you.

Meanwhile, this is what I was going to read to all of you, and what I did read to the hospital CEO and the administrative personnel, and what the advocates are sending along with the letter to the DOJ and JCAHO.

STATEMENT TO N-7 TREATMENT TEAM & CEO OF MIDDLESEX HOSPITAL et al.

Although I have a longer statement, I first want to read you a poem that I wrote about my experience here. It is only half a page long, but like any decent poem, it says a great deal in few words. The expression “Long pig” means a human being intended for eating.

TO MY PROTECTORS

I came to you fractured,

splintered to syllables,

all-fired to incinerate

the house of my body

where the devil lived.

But I was not nice,

not nice, not nice, no,

I was not nice enough

for balm and kindness,

or to win back my art

or my writing supplies,

so I upended a trashcan

on top of my head

and uniforms nailed

me, naked X, to a bed.

It gouged my brain.

Freight train. Tank.

Two years: still blank.

Nurses, doctors,

thieves: you knew, you

knew. You made of me

pulled pork, long pig

X-posed and pinioned,

not quite a specimen

for your knew the subject

and your objective  :

your satisfaction showed

as you struggled to hide

your smiles.

I was admitted to North-7 in extremis: confused, psychotic, and traumatized. Exquisitely vulnerable, my sole comforts were doing art and writing. These were also my strengths. Yet instead of using these to help me, you consistently employed them against me–withholding supplies as punishment when you felt I was not behaving nicely and worse, using loss of them as a stick when they were most needed. The first time this happened was on April 9th, nine days after I had been admitted. I had been using glue sticks freely to make a large collage for several days. Angry at me for yelling at her, one of the senior nurses whom I won’t name, decided to withhold them. She would no longer give them to me until, as she put it, “the team puts them on your treatment plan.” This frankly felt like such gratuitous punishment, and so unnecessary, not to mention counterproductive, that I could see nothing in it but petty revenge. Nevertheless, not myself and not in control, I screamed, “Fuck you!” and ran to my room. Luckily, Christobelle from OT, the one person who consistently treated me not only with understanding and kindness but with respect and dignity as well, came in shortly thereafter carrying two gluesticks. I do not know whether she knew of these new restrictions or not, but I was grateful.

On another later occasion, I had been using my soft felt-tipped markers, which my old treatment plan permitted me until 10pm. That treatment plan had been changed, however, and the new, more relaxed one said nothing about markers, so it seemed to me that I was now allowed markers in my room just like anyone else. However, around 10pm, someone called Bob came in demanding them. He threatened that if he had to ask, quote, “a 3rd time you’re in for trouble.” My pulse ratcheted upward. Uh, oh, uh oh. Why was he doing this? Was he deliberately baiting me, trying to pick a fight? He could so easily have discussed my understanding of the new plan. It wouldn’t have been so hard to figure out a compromise. After all, they were just Crayolas, not carbon steel knives. I was sick of the power plays, and sick of the way staff just wanted to control me instead of talk to me and of how they insisted on domination at all costs. Well, this time I was not going to give up without a fight, and it seemed that a fight was what Bob was itching for. Instead of negotiation and attempting to find a compromise, Bob reached out to grab me, which I construed as an assault. I screeched, “Don’t touch me!” Someone else grabbed me from behind. I kicked and punched. Someone told me later it was Ruth I kicked. In my journal I wrote this: “she was furious enough to lie and scream that I caused an uproar ‘every single night and I’m sick to death of it!’…”

I fought them then, clawing and screaming, trying in vain to resist, my body flailing as the chart itself notes, my heart hammering. Why were they doing this to me over a few markers?! I wanted to scream. Why were they being such bullies? They were hurting me! But of course there were several of them against the one of me and they were much stronger than I at 102 pounds so naturally they overpowered me. They literally dragged me to the so-called time-out room and dumped me on the floor, ordering me to calm down. Then they closed the door. No they didn’t lock it, but they kept me from leaving by leaning against the door.

You know, I don’t know why you bothered calling it a time-out room. No one could use it at will. And when you put me there, I didn’t ask to go – I was forcibly dragged there — and I didn’t want to stay: you kept me there by force so it was the same thing as seclusion, literally and legally. Time-outs have to be voluntary, you have to be able to come and go if and when you want to. When it is forced, it is by definition a seclusion. Period. That cold barren room was not a time-out room. Who did you think you were you kidding?

And listen, did it never occur to you that it was always your treatment of me that generated my behavior, yes, the negative behaviors as well as when I was in control? You could have found out what was going on by talking with me. Instead, you decided to dismiss everything I said and did as manipulative and acting out so you didn’t need to listen to me. Perhaps you thought this disregard was kept secret from me, but I knew it   at the time and it caused me enormous anguish. All I wanted was to be treated like a human being. All I wanted was to talk to someone and be listened to. But all you did was make assumptions. You never checked them out with me to find out if they were true and they almost never were. Assume makes an ass out of U and me…But mostly it does terrible damage when the assumptions are wrong. I was so afraid, I was so terribly afraid, but you never knew the half of it. All you did was to dehumanize me, ignore my pain and order me to shut up and be quiet. I know I was difficult for you to quote unquote “handle.” Hell, I was difficult for ME to handle. But I do not have a personality disorder. Ask anyone who knows me. Ask my family. Ask the psychiatrist who saw me from 2000 until 2009, ask the psychiatrist I see now. But you decided that you could detect borderline traits (somehow transmogrified into the full-blown disorder upon discharge…) despite the presence of an active psychosis. By decreeing that I had such a disorder, you put me in an utterly untenable position, because then you had a justification, so you thought, for taking nothing I said at face value. To me it felt like nothing less than soul murder and I will tell you that this particular form of soul murder makes a person want to die. It makes a person want to bash their brains out in public just to get someone to acknowledge them and take them seriously.

April 28.. April 28, 2010. You wrote in my chart your interpretations of my behavior that day and of what happened. Yes, your nursing and physician notes were supposed to be objective but dispassionate as they may have attempted to sound, all observation is but interpretation. I repeat: All observation is interpretation. Now I want you to know what happened from my point of view. (I know that some of you have been snooping around, reading my blog just as you did during my hospital stay, but you will have to sit through this anyway…)

At around 7:30pm, so the evening nurse reported in my chart, I “walked into the dayroom” and if one can believe this, without any provocation I “began shoving and turning over chairs. I then, quote, “picked up the patient trash can and put it over my head.” Staff ordered me to what they called the “time-out room.” Nursing notes report that I refused and, I quote, “went to bed instead.” Because I had not followed her direct order, the nurse wrote that “security was called and patient required security to carry her to time-out room as she refused to move or walk.” No, I simply lay on my bed, mute, trembling with terror when the phalanx of guards roared in.

Despite my lack of resistance, the guards physically took hold of me – unconcerned apparently with my known history of rape and of recent trauma — and took me from my bed where I was calming myself in the least restrictive environment. They physically carried me to the seclusion room and together with staff they forcibly prevented me from leaving.

This is what I wrote in my journal: “It was (freezing in that room) and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back… this time strong-arming me and forcing me to a seated position on the mattress before quickly leaving but not locking the door.”

The nurse wrote this: “Patient refused to stay in time-out room… Patient attempted to shove staff, kicked at staff to get out of room. Patient was instructed several times to sit on mattress and stop pushing at and kicking staff. Patient refused. Seclusion door locked at 7:55pm.”

At this point both records state that I stripped off all my clothing. But the official records record only that fact, and that I then “was changed into hospital garb” and that I immediately stripped these off too. In my journal I wrote something else in addition that is rather revealing: Left alone in that room, I decided, and I quote, “they’d have to give me a blanket if I was [naked] so I quickly undressed and just hid under the mattress for warmth. This caused a stir for some reason and I was forced to put on hospital pj’s and lie down on the mattress. This would not do, not without a blanket which they continued to refuse me.” So once again I took them off and got up and tried to push through the woman barring the [temporarily] unlocked door. She called for reinforcements and they came. In fact, they came en masse.

“At this point” my journal continues, “they again subdued me and told/asked me why I was fighting. I said [it was] because I needed someone to talk to. That was all I wanted, just someone to talk to. One guard seemed taken aback. All these personnel hours wasted when all I wanted was a half hour of one person’s time? It seemed to strike him as ludicrous as it did me….

“Why don’t you just ask to use this room when you feel anxious or upset?” he then asked me.

“I do, I have!” I replied

“Well?

“They always say it has to be reserved for an emergency.”

He seemed completely flummoxed by that reasoning but there was no arguing with Policy so he fell quiet. Finally they decided to leave, telling me to be quiet and lie down.

I did. I did. But I was cold and I begged for a blanket.

“Sorry, it is too dangerous. You will have to sleep without one.””

Why was it so dangerous when I was on one to one and had an observer at all times? It made no sense. And why wouldn’t they just give me a sweatshirt and socks then? Or turn up the heat. How did they expect me to sleep, I was too cold!”

But this last categorical refusal was just too much. No, no blanket, no nothing. Just shut up and freeze. “That was it, I’d had enough! I dashed at them head-first and they parted, only to grab my arms and try to stop me. Someone twisted my right arm and held it behind my back, but I knew how to get him to stop it, so I tried to bite him and he briefly loosened his grip. I twisted my own arm back to me and my left pinky, held, closed tightly onto something, hooked so tightly it wouldn’t budge. My legs, the right one, grabbed the thin leg of a woman behind me, making her lean back off-balance and lose her grip on me. Then I switched to holding both my legs in a death grip around the legs in front of me. It didn’t matter one iota that [I had taken off my clothes again to get a blanket and] was naked…Anyhow, they eventually overpowered me.”

As one guard shoved me onto my stomach on the hard floor, his knee in my back, he muttered in my ear, “You bite me, I’ll teach you a lesson you won’t forget!” Then he mashed my cheek hard against the dirty linoleum till I was breathing dust.

I knew he was capable of hurting me, they all were. I also knew that people can die during prone restraint as the Hartford Courant and others have documented. Adrenalin flooded me, my pulse threatened to rocket out of control but I knew I had to calm down. Very deliberately, I forced myself to lie still, barely breathing.

Fortunately, when I stopped resisting, they released me and let me sit up. Someone gave me a sheet to cover me. The room cleared, except for a tech who was on 1:1 with me. She apparently was now allowed to talk with me, and for this I was supremely grateful. We conversed calmly. The door to the seclusion room had been left open, a big relief.

However, people were still talking in low voices outside the door. I heard someone trot down the hall, heard the open-and-shut of a cabinet door. I asked my 1:1 what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”

“A bed?” I said. That gave me a bad feeling…Then I understood what was going on.  “Uh, uh. They can’t put me in restraints, I am calm and it is illegal to restrain someone who is not a danger to self or others. You know that.” I repeated it loudly, loud enough so the other staff could hear me. I began to tremble, but forced myself to remain as composed as I could, mustering all the arguments I could against the use of restraints. A nurse entered the room then and asked me to come down the hall. Did I need an escort or could I walk there by myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm.” I was barely able to speak. I felt dizzy and short of breath but I tried desperately not to show it because I was afraid that if she knew how terrified and upset I was that it would actually give them justification. Nevertheless, I followed her to the empty room — my heart went cold, I could feel urine leak — I felt like “dead man walking” when I saw that in fact they had fastened four-point restraints to the bed.

I entered the room filled with staff members and guards. I told them over and over that I was calm and willing to take PRN meds. I said I knew they were punishing me and that they knew it too. No one contradicted me. The nurse in charge ordered me to lie down on the bed. I protested. She threatened that if I didn’t “they would assist me.” I was terrified of another assault. In fact I was so terrified just of the physiological consequences of fear itself – the flood of adrenalin and painful tachycardia — that I made myself get it over with. I lay down on the bed. Gritting my teeth, I said nothing even when they pushed aside most of the sheet that covered me.

I meant to remain silent. I meant to remain completely still in order to shame them. But when they pulled my wrists right over the edges of the bed, shackling them painfully below the level of the mattress, and spread- eagled my ankles to the corners of the bed, I broke that silence and objected — vociferously. I was appalled at their barbarity but my protests did nothing. I fell silent and let them do what they wanted. Finally satisfied, they trooped out, some of them actually smiling, leaving me alone in the room. I fell asleep quickly, a narcoleptic stress reaction. Nevertheless, no one returned for an hour. They extracted a pledge of obedience from me before taking off the shackles.

“When they released me,” I wrote in my journal, “my back hurt so badly I could barely walk and…my scapula muscles felt as if they had been separated. ‘I plan to sue you for doing this to me.’ I said as calmly as I could as I left the room. Nobody reacted.”  As I wrote in my journal the next morning, “I woke in severe pain, the muscles in my chest felt torn from those that connect it to the shoulder… the pain went clear through to the scapula.”

That was not the end of it. Once you treat a human being in such a fashion, all bets are off as to how she behaves from then on. I no longer cared what you did to me after that. When you threatened me with restraints a few days later, I dared you to do it. I egged you on and so you did. My capitulation showed subsequently when I stripped naked multiple times, even voided on the seclusion room floor and smeared urine on the walls. You reduced me to an animal. I hope you were pleased with the results.

From what I witnessed, many of you — on the nursing staff at any rate– took no pleasure in your jobs. You apparently didn’t want to work in psychiatry, and wanted nothing more than peace and quiet and an easy day’s work. When one of you actually screamed at me, after that staff assault occasioned because I didn’t hand in my crayons on time, that you were “sick and tired” of listening to me every night, that was stupid and nonsensical. How can any hospitalized psychiatric patient be expected to worry about what makes a nurse comfortable?  By rights it should be the other way around.

I think what it comes down to at the North-7 secure unit is that you expected patients to meet your needs and make you happy and you tried to force us to. In my case, and in at least one other patient’s that I witnessed, you even tried to physically assault us into doing so. But what a farce. Patients in the outer unit warned me to get out of there; they told my friends they were worried staff would hurt me. They were right. By the time I was discharged, I had almost no memory of what had happened over the previous 6 weeks. It is only in the last couple of months that anything has returned to me. Yet every single day since my discharge, when I least expect it, something triggers a thought or bodily memory of my stay here and instantaneously my heart starts hammering, I get dizzy because I can’t breathe, and I tremble and cry just thinking about it because I’m right back in that seclusion room and April 28th is happening all over again…

Now, I don’t expect to recognize any of you. How could I? I still don’t remember much except those episodes I wrote about, and some little snippets here and there. I am told that some of you will be nursing staff on N-7 and some my so-called treatment team. Well, if you were my treatment team and you just turned a blind eye to what went on, for that you are just as guilty as if you accomplished the acts yourselves. Of course, the worst of it mostly took place in the evenings, in relative secrecy and when few were around. But if you knew it was happening nonetheless and If you approved, well, then, I have nothing to say except shame on all of you.

I felt helpless and utterly alone. Frightened beyond belief. No one defended me, no one helped me or came to my rescue. No one except Christobelle Payne. Christobelle treated me with compassion and kindness. She always made sure that I had gluestix and magazines for my artwork, even when your every impulse was to withhold them as punishment. I cannot tell her how grateful I was and how grateful I remain to her for treating me so humanely. I have never forgotten the oasis of kindness she provided in your North-7 desert.

Apparently no one else on the unit understood how to behave humanely or to treat patients with respect, or no one else gave a damn.

Punishment is the nature of what you did to me. You lost your tempers and you punished me.  The result was that you permanently damaged and traumatized me. I believe you did what you did absolutely on purpose and I believe you did not care what the consequences would be to me.

Some of you deserve to lose your jobs because of it and because of what I’d venture to guess you have been doing for a long time to other patients.  Perhaps you will. You all need to be thoroughly retrained, if that is even possible. Certainly the secure side of the unit needs to be completely reorganized and re-staffed. But that is not my job. You’ll find out what will happen after the Department of Justice and the Joint Commission do their thing.

I hope you remember me and what you did to me for a very long time. Unfortunately, I know I may never be able to forget you. I wish I could, believe me, I wish I could.


Involuntary Outpatient Commitment or Assisted Outpatient Treatment: Kendra’s Law

Please note that this post, while distinctly against such excuses for treatment as Involuntary Outpatient Commitment, AOT or anything like it, it intends no disrespect for unfortunate victims of crime like Kendra and others for whom these eponymous laws have been named.

____________________________________

This afternoon, I testified against a bill raised in the Connecticut judiciary committee, which proposed Involuntary Outpatient Commitment. The provisions of this bill were so egregious, so outrageously discriminatory against those of us with psychiatric illnesses, and carried such potential to cause more harm and trauma than treatment, that despite my grief and exhaustion, I felt I had to write something for the judiciary members to read, and then to cut it down to a 3 minute oral presentation to read before them today…

First of all, let me recap the worse provisions of the bill, rather than making you read the whole thing (Though it is actually a revision of a bill, and so is not long, a paraphrase is always easier on the eyes, so to speak.) First of all, instead of the two psychiatrists needed to commit a person to the inpatient stay of 15 days observation — a PEC or physician’s emergency certificate, which is the first step of any inpatient stay — an outpatient commitment requires only a single psychiatric opinion, and the doctor need have one year’s post medical school experience to be considered competent enough to evaluate any patient for such purposes. Not only that, but he or she can evaluate a patient at much at 10 days before the hearing and that would suffice as valid, even though everyone knows much can change in 10 days. After all, people are admitted to hospitals inpatient these days and are expected to be discharged within 2-5 days on average, at least in Connecticut. Then, the next outrage against a psychiatric patient’s civil rights is that the treatment providers will be permitted to speak to ANY family member or anyone who knows the patient well, about the patient’s issues and treatment history. No matter that the provider may not know anything about this family or these friends, nor what their relationship with the patient is like!

Worst of all, get this: Once a conservator is assigned, and forced medication is arranged, the police or ambulance may be called and the patient transported to a location where he or she will be forcibly medicated against their will, i.e. restrained if necessary and injected in the buttocks (“dignity preserved” hah!) most likely with some depot drug like Prolixin or depot Risperdal that, no matter how horrible the side effects are, will remain in the patient for a long time.

Despite this, the provision remains that this can remain in effect at most 120 days. Go figger. You can forcibly medicate a person for 4 months, and presumably (I doubt it) get them well for that long by brutalizing them. But after that, they can do as they wish, which likely will be to NOT take the humiliating injections or the medication by mouth either. So what was the point? Usually, a person will take a drug that makes them feel better, barring painful side effects. So if the drug is rejected, 75% of the time it has been shown to be because of intolerable side effects or simply because the drug doesn’t work….So what good is IOC then?

So, in response to this proposed — well it is outrageous, ill-conceived, unjust, and just plain stupid… I wrote the next 2 pieces. The first is my oral testimony, which I cut out and edited from the second, my longer written testimony, which I had to leave with the judiciary committee as it went on much longer than the 3 minutes oral testimony time each person was allotted. Also, when I wrote the written testimony, I had not been aware that there was actually a proposal to physically restrain and inject an outpatient. So there are those differences between the oral and the written forms of testimony. Both were extraordinarily difficult to write and to read as you will see, and will no doubt understand why, especially if you are a long time reader and remember all that I have written about the traumas I have experienced at two hospitals in CT that begin with M…

________________________________________________________

Oral Testimony before the judiciary committee

March 29, 2012

Opposing sb No. 452

an act concerning the care and treatment of persons with psychiatric disabilities

Good  Afternoon, members of the Judiciary Committee.  My name is Pamela Spiro Wagner. I am a lifelong resident of Connecticut, currently living in a suburb of Hartford. As a Brown University graduate, elected to Phi Beta Kappa in 1975, I  attended ____ Medical School until psychiatric difficulties, later diagnosed at schizophrenia, forced me to leave. In 2005, I co-authored  the memoir, Divided Minds: Twin Sisters and their Journey through Schizophrenia, which was a finalist for the CT book award. I also wrote a book of poems, published in 2009.  As a visual artist, my work has been exhibited in Norwich, Hartford, Wethersfield and on the internet. I am here today to oppose SB 452, an act concerning the care and treatment of persons with psychiatric disabilities. This bill  proposes to introduce involuntary outpatient commitment to CT.

Involuntary treatment doesn’t work, period; it usually causes more harm than good.

In 2009,  deemed psychotic and dangerous to self, I was hospitalized against my will at Manchester Hospital.  Instead of my usual medications, I was given  Zyprexa, which has severe side effects. I refused it and decompensated. The psychiatrist decided a judge would force me to take Trilafon, a drug that made me miserable. If I refused I would get  an injection of Haldol in the buttocks.

Nonetheless, I refused. I also refused to take down my pants for a needle full of Haldol, so I fought them when they approached. After a few such encounters they started calling a code — “Dr Strong” — to bring in the security team of men and women who invariably assaulted, subdued, then stripped my clothing off, restrained and injected me, despite my terrified screaming and fighting. These confrontations along with liberal use of 4-point restraints to shackle me to the bed, or solitary confinement in a locked and freezing seclusion room without even a mat on the floor, happened so often that I literally lost track of time. As a result of these traumas I now suffer from PTSD.

This is what involuntary treatment leads to. According to SB 452 , police could be called to transport a patient to a location where she could be restrained and forcibly injected. That is inhumane. Involuntary Outpatient Commitment is just coercion and brutality masquerading as help.  This is not how Connecticut should be delivering its mental health care.

Thank you for your time and attention.  I would be more than happy to answer questions.

__________________________________________________

Note: I wrote this before I learned that the SB 452 bill actually proposes to permit the involuntary transportation and forcible restraint and injection of an OUTpatient…

Written Testimony before the judiciary committee

March 29, 2012

Opposing sb No. 452

an act concerning the care and treatment of persons with psychiatric disabilities

Good morning members of the Judiciary Committee. My name is Pamela Spiro Wagner. I am a lifelong resident of Connecticut, currently living in a suburb of Hartford . As a Brown University graduate, elected to Phi Beta Kappa in 1975, I  attended  _____Medical School until psychiatric difficulties, later diagnosed at schizophrenia, forced me to leave. In 2005, I co-authored  the memoir, Divided Minds: Twin Sisters and their Journey through Schizophrenia, which was a finalist for the Connecticut book award. I also wrote a book of poems, published in 2009.  As a visual artist, my work has been exhibited in Norwich, Hartford, Wethersfield and on the internet. I am here today to oppose SB 452, an act concerning the care and treatment of persons with psychiatric disabilities. This bill  proposes to introduce involuntary outpatient commitment to CT.

Involuntary treatment does not work.  Over the short run, you can make a person take medication (which is what this is all about). You can threaten to hospitalize her “or else” and frighten her into swallowing a pill for a while. And you can medicate her forcibly if she ends up in an inpatient setting.  You can do so despite the horrendous side effects she may experience – from intolerable sedation or enormous weight gain and diabetes to the agonizing restlessness known as akathisia, the potential development of a disfiguring movement disorder like tardive dyskinesia, or just seemingly minor problems such as increased dental caries resulting from a chronically dry mouth. Not to mention a score of other severe side effects I haven’t even mentioned.  It may be that in the short run, the patient will break down in the face of such measures and begin to accept treatment “voluntarily” – or seem to. Perhaps she may even seem to “get better.” But I am here to tell you that despite appearances of success, involuntary treatment is the worst possible thing you can do to a person with a chronic psychiatric condition. Symptom improvement is usually temporary.  For any number of reasons, as soon as you cease forcing a person to take pills, she is more than likely to stop taking them, especially if side effects are objectionable or coercion a major factor in her decision to take them in the first place. If she has been treated against her will, either as an in-patient or in an outpatient setting, the effects of the trauma involved  may be permanent. I know, because I have been there.

Although I am in outpatient therapy, I have not always been and am not now always compliant with medications, especially those that make me feel deadened or bad, even when they seem to alleviate the worst of my symptoms. If a medication makes me feel horrible or worse, makes me feel nothing inside, I usually refuse to take it. I tend to agree with those who say that sometimes the treatment can be worse than the disease. Still, while in-patient, I have  often been subjected to “forced medication hearings,” which I lost, the deck being inevitably stacked against me. In 2004, at the Hospital of St Raphael’s in New Haven, I was not only forced to take Zyprexa, a drug that induces severe obesity, high cholesterol and diabetes, but in addition, the probate judge, on the instigation of the in-patient psychiatrist, ordered that I undergo involuntary ECT, otherwise known as electro-shock treatments. All of this was in the name of  “helping me.” No matter that I did not want it, nor that my neurologist was completely against it, fearing brain damage. Nothing mattered but the wishes of that one psychiatrist. That single psychiatrist, whose word and opinions counted far more than anyone’s though she had known me all of 3 weeks.

One of my most recent experiences with involuntary treatment was at Manchester Hospital. This was so horrendous that in combination with an even more brutal experience, 6 months later, at Middlesex Hospital in Middletown, I developed PTSD, posttraumatic stress disorder. Because Middlesex Hospital has already been investigated and cited by the Office of Protection and Advocacy and the Department of Public Health for improper use of restraints and seclusion because of what they did to me, I would like to tell you about the Manchester Hospital experience, as I believe it will give you a better “taste” of where Involuntary Outpatient Commitment, when taken to its logical conclusion, can and must lead.

I was  hospitalized against my will at Manchester Hospital in 2009 on a 15-day physicians emergency certificate (PEC).  In the first few days there, I was summarily taken off the two-antipsychotic drug combination, plus the anti-seizure meds and an anti-depressant I came in on. This  “cocktail” had worked for me since 2007 without side effects so it was one that I was willing to take. I also felt it helped me function better than I had in years. The psychiatrist at this hospital decided, however, that “since you are here, your current meds aren’t working, so I am going to put you on something else.” Did it matter to him that I had already been tried on nearly every other antipsychotic drug on the market, old and new, and none worked as well and with as few side effects as the two I had been taking? No, he was the doctor and he knew better than I what was what. Moreover, whatever he said became law.

So the “offending meds” were removed and I was again told I had to take Zyprexa, a drug that I hated because of the severe side effects. Over the next few days, I continued to refuse it, and naturally, I decompensated further, especially since by then I was taking no antipsychotics at all. A hearing with the judge was scheduled and the psychiatrist decided at the very last minute that they would force me to take one of the oldest neuroleptics in the PDR, Trilafon, a medication he had no reason to believe worked for me. Had he asked I would have readily explained to him it made me exquisitely miserable, even at the lowest dose. Instead, he said only that if I refused it, I would be given an IM injection of Haldol in the buttocks –as punishment. Or so I felt.

It may seem that I am making unfounded statements about this psychiatrist’s intentions, but think about it: when one is told that the “consequences” of refusing to take a pill will be an injection of another awful drug, how else is one to “read” it but as a threat of punishment? How would YOU read it?

Well, I was not going to take Trilafon, not when I knew how horrible the side effects were that I would suffer as a result. So I refused the pills. I also refused to lower my pants for a needle full of Haldol, so I fought them when they approached. After a few such encounters they started calling a code — “Dr Strong” — to bring in the security team of men and women who invariably assaulted, subdued, then stripped my clothing off, restrained and injected me, despite my terrified screaming and fighting. These confrontations along with liberal use of 4-point restraints to shackle me to the bed, or solitary confinement in a locked and freezing seclusion room without so much as a mat on the floor, happened so often that I literally lost track of time. As a result of these traumas I now suffer from PTSD.

Why do I tell you this? Because this is what forced medication and involuntary treatment can lead to much more often than you want to believe. If sb 452 passes and Involuntary Outpatient Commitment is instituted, how do you propose to treat someone who does not want outpatient treatment? You cannot assault an outpatient and brutally medicate them using 4-point restraints and IM injections. All you can do is bully and threaten. Involuntary Outpatient Commitment only serves to re- traumatize those with psychiatric disorders.  In my opinion it is just coercion and cruelty masquerading as treatment. But it won’t help anyone.  It will only drive the would-be consumer as far away from so-called  “treatment” as they can get. This is not how Connecticut should be delivering its mental health care.

Thank you for your time and attention to this matter.

Schizophrenia and Traumatic Treatment: Continued Use of Restraints and Seclusion

Please note: For my final take on what happened at Middlesex, please jump to this link: https://wagblog.wordpress.com/2012/05/15/useless-psychiatric-mediation-and-a-poem/   (added in September 2012)

First, before I start my post today, I wanted to share my newest artwork, which is a colored pencil “painting” of a woman who lives in my building, whom I will call Rose. She did not ask me to paint her; she was simply someone who sits quietly for many hours in the community room, and so was a good subject for a portrait, and a photo. I also happen to find her a very agreeable person, one of the nicer ones here (most are gossips and backbiters, or if not most, then the most vociferous and visible of the residents). I think she will be quite pleased with how it turned out, so long as she does not expect anything but a portrait that is faithful to life, rather than an idealized one. I believe, however, that Rose is very down to earth and knows what she looks like, and will appreciate what I have painted.

Rose, intent on her needlework
Rose intent on rugmaking
Rose comparison of painting with photo

_______________________________________________________

Now I want to discuss, yet again, the use of restraints in Connecticut psychiatric units, particularly as it pertains to my treatment there. As I recall, I have not gone into much detail about the last hospital stay, back in April and May, largely I think because it again was so traumatic and in many ways similar to the previous one, that I could not bear to contemplate it.

However, as very little as I recall, I do remember more of the stay than the complete amnesia I still experience for the stay in Manchester, back in October or November of 2009. When I say I have a loss of memory with regards to this other hospital stay in the spring of 2010– in Middletown — I meant it more for the specifics of certain episodes. And for any of the people there who staffed the unit. (Except for Christabel the OT).  With regard to much that occurred I believe a lot could be brought back to me, under the right circumstances. I do, for instance, continue to have an overall memory of what the place looks like and where my room was and some details about what happened. What I do not, and did not remember, not even the next day, was most of what precipitated the use of restraints and seclusion during this stay. Or at least, of the two or three incidents of S and R two are jumbled together, so that it takes some mental probing for me to straighten out any of it. but one incident remains too clear in my mind for comfort though even at the time, or immediately afterward, as well as now, I have no idea what was the actual precipitant.

Anyhow, what I recall of  that episode is this: I had been taken off Geodon, which I took regularly with my  Abilify up till then, both in order to boost its antipsychotic properties as well as to temper any Abilify-induced irritability. The irritability was physical as much as mental — and with the resultant tendency to get into verbal fights and arguments with anyone who, as my mother used to put it, looked at me crosswise. I have no idea why they did this, took me off Geodon, given that I know I explained the rationale for the use of two antipsychotics. But many MDs seem to find this objectionable, however effective. Perhaps they considered the 20mg Zyprexa, which they had talked me into taking on an acute basis, would be an adequate substitute for the calming effect of the Geodon. They had wanted to stop the Abilify, too, using Metformin, a diabetes drug, for weight control, but I had insisted on taking it both in an effort to combat Zyprexa’s tendency to cause weight gain, but also because I believe that it is the Abilify that has so massively enhanced my creativity.

So there I was, on Abilify untempered by Geodon, and taking Zyprexa, which induces its own “upsetness” when my weight invariably increases…I assume that I must have been hostile, loud, and disruptive, for I do not know why else they would have made me go into the seclusion room. I do remember that I could not calm down, and that in the flimsy johnnies they had clothed me in, I was freezing, so that even when the nurse doing constant observation told me to lie down and rest, I was unable to do so for all my shivering. I begged for a blanket, but no deal. I pulled the entire bare mattress over me as a covering. Well, this was apparently seen as a self-destructive act, or something, as immediately they pulled it off me and dragged the mattress itself from the room. Now I had nothing for warmth, except my own anger at having been treated  in such a fashion.

I remember that I was yelling a lot, and that I wouldn’t lie down on the cold linoleum and “calm myself.” No, I wanted to talk, and begged the nurse to do so. Instead, she only turned away and told me again to lie down on the floor. Well, this enraged me, and I went to the door to complain again. She said nothing, only stood in front of the open door so that I could not leave. Finally, getting no response, and still anxious and “het up” I suppose you could say, or over-activated by the Abilify, I tried to push my way through her into the opening. Immediately two “guards” pushed me back into the room. I yelled at them, and pushed back. One of them asked me what was wrong with me, why I didn’t just ask to talk with the nurses instead of resisting physically…I looked at him and said that I did ask to talk, and she refused. He seemed somewhat surprised by that. Nevertheless, he ordered me to go back into the room and lie down.

I was having none of this dictatorial behavior on their part, and as I recall, at one point — no, I do not remember what happened. I only know that suddenly the guards were on top of me, and one had pinned my arms behind my back and was pushing my face into the linoleum floor. It was as if I were a recalcitrant inmate of a prison and this was a cell “take-down.” I was hurt and I was furious.

When they let me up (and why they had pinned me to the ground I have no recollection, only that when they let me up, I was finally allowed to talk to the nurse nad stand out in the hall with her. I heard some talking behind my back and a commotion, followed by feet going down the hall away from us. I had a bad feeling about it, and asked the nurse, “What are they doing?” She responded, ominously, “They are preparing a bed for you.” “a bed? what sort of bed? She remained silent and I understood that they were putting restraints on my bed…”You can’t restrain me, I am out here calmly talking to you. You haven’t even offered me a PRN and I will tell you now that I would be more than willing to take one. But I am NOT a danger to myself or others, and you cannot legally put me in restraints.” The nurse continued to remain silent. My heart began to race. I called down the hall, “I will not let you use restraints on me, I am calm and this is not allowed.”

Some of the staff approached me and told me to come down to my bed room with them. I complied, because I knew that if I didn’t they would have some reason to say I “deserved” to be restrained. When I got to the room,   I found I had been correct: there on my bed were the straps and shackles of four-point restraints, attached to the bed frame.

“I am calm and I am not a danger to myself or others,” I carefully declared. I will take medication and I do not need restraints.”

“Lie down on the bed, Pamela” someone told me. I refused, saying that this was punishment pure and simple and that they had no cause to do this nor any legal right. “I will ask you one more time to lie down on the bed, Pam, or the security team will help you do so.”

At this point, I understood that they were going to use this form of discipline on me no matter what I did. That they were out to get revenge and that they would use any excuse to excuse such measures. So if I “made” them force me into the restraints, that would by itself prove that I “deserved” them. So, more humiliated than I believe I have ever been in my life, I sat down on the bed, then lay down on my back and said out loud, “I am now placing my limbs into four-point restraints, and I want a record of the fact that I am calm and not resisting and that I have asked for a PRN instead.”

It was no use, though, as they went ahead and shackled me, then left me alone in the room, except for a staff member monitoring me through the door, left partially ajar. My heart was racing with rage, and I could feel the pain of such profound humiliation surging through me. But I did and said nothing, I think, because I was going to prove to them that the drastic measures and punishment they had inflicted on me was WRONG. After about an hour and a half someone came back and let me out. I was neither compliant now, nor placated and as soon as I was free and out of that room, I let it be known, loudly  that I intended to file a complaint. But no one said a thing, no even spoke to me the rest of the night…

THAT is what I remain so traumatized by, at least with respect to  this time: the utter humiliation of what you might call “cutting my own switch,” along with the clear understanding — even mutual acknowledgment — that they were punishing me.

This continues to preoccupy me, that is when I allow myself to think about it, or when I continue to try to read the records of that stay, which records I only a week ago obtained (having sent for them many weeks ago…). I cannot help but re-experience the same brutality and the same extreme and exquisite humiliation, and once again it hurts beyond belief. The worst thing perhaps is that when I told my family about what the staff had done to me they didn’t come to my support, they didn’t unconditionally defend me. They didn’t even  seem to care, or to believe, that I had done nothing to “deserve” four-point restraints (as if anyone deserves them). Another family would have automatically come to their member’s defense and declare that NO one deserves such brutality, and that as their family member I should never have been treated that way. Another family would have done  –oh forget it!  No, my family is always so eager to please the staff and to believe that I am in the ‘wrong” at these hospitals, to believe that I am at fault, (this is the story of my life!) that they simply told me I must have caused their use of such brutal methods of control by my own behavior, I surely deserved it, and besides “what else could they do?” Shackling me, calm and rational, me to a bed was clearly the only option and entirely justified…So much for MY family’s loyalty and compassionate support, huh?

Well, bitterness solves nothing, so I won’t dwell on the last subject, but I will say that if I can, I intend to file an unoffical complaint, or barring that, an official one. The problem with the latter is that I will not then be able to confront my persecutors. whereas if I did so unofficially, it might yet be possible, if only to avoid a messy public affair. After all, I could easily write something…No, I won’t go there. For now, I only wanted to describe what continues to occur at Connecticut psychiatric units, despite the regulations and general disavowal of the use of cruelty in the treatment of those with mental illness. It still goes on, it just happens behind the closed doors of the hospital and the continued use pf seclusion and restraints as discipline and as a salve for frustration, depends on the assumption that no patient will bother, after the fact of discharge, to do anything about it, except try to forget.

Things are better than this, but do not feel it!
Note the linoleum and bare mattress. I have never seen a windowed seclusion room!

The Mentally Ill in Prison and Out-patient Commitment Laws

Dear Pam,

Thank you for the link to the Dr. Manny Show. There are indeed many faces of mental illness. Some people have mild cases and are able to work and function at the same level as anyone else.

Congress passed mental health legislation in 2008 providing for workers who have psychiatric dysfunctions to be covered under their employers’ health insurance at the same rate as employees with physical illness (certain exclusions apply). That was a positive step. However, acute mental patients do not benefit by that law, because severe mental illness is often too debilitating for victims to work, especially without the psychiatric treatment they need. In fact, people with acute schizophrenia, bipolar disorder, PTSD, and other conditions frequently resist treatment even when it is available to them.

Unfortunately, 1.25 million mentally ill Americans are currently imprisoned for offenses ranging from simple vandalism or disturbing the peace to murders. Last January, Rep. Eddie Johnson (D-TX 30) introduced H.R. 619, a congressional bill to resume Medicaid coverage for inpatient psychiatric care for patients in crisis and for people who require long-term containment in a secure treatment environment (such as patients who have done violence).

H.R. 619 is an important bill that deserves our support. It was largely the removal of Medicaid funding several decades ago that led to criminalizing mental illness. That in turn led to many other problems, such as overcrowded prisons and a burdensome prison budget. Hundreds of thousands of acute patients were “de-institutionalized” in the 60’s and 70’s only to become homeless and/or prisoners. Thousands of acute mental patients continue to be dismissed from mental hospitals and prisons without subsistence assistance and provisions for continuous monitoring and treatment under programs like Kendra’s Law.

Assisted Outpatient Programs like Kendra’s Law have been proved to reduce homelessness, arrests, hospitalizations, and incarcerations by up to 85% (among New York participants, compared to their circumstances three years before becoming program participants). The impressive rate of reduced arrests and incarcerations also indicates that community safety was improved significantly as less crime was done, and it also follows that the prison budget was lessened by helping patients with living arrangements and mandating continuous psychiatric care for ex-offenders and former inpatients who often lack the wherewithal to make wise treatment choices and avoid psychiatric crises.

Assistance to the Incarcerated Mentally Ill (AIMI) supports Rep. Johnson’s bill, H.R. 619, as well as NAMI, Treatment Advocacy Center, and many other mental health advocates who believe resuming funding for inpatient treatment is best for patients and for America. In fact, 100% of police officers I polled agree that prison is not the place for severe mental patients, where they comprise 60% of the inmates kept naked in solitary confinement cells.

I solute Congresswoman Johnson, a former psychiatric nurse, for introducing H.R. 619, and I hope everyone who is concerned about human and civil rights will support the bill and end the discriminatory practice of punishing Americans for being sick. I pray for another bill to be introduced to address the second cause of mental illness having been criminalized in America – the lack of continuous care and subsistence assistance for released prisoners and former inpatients. Kendra’s Law should be applied nationwide so that acute mental patients will be treated, not punished, for having a common, treatable health condition that requires monitoring and care just as diabetics and heart patients receive.

Inpatient hospitalization was not included under the national health care plan, so it is very important to pass H.R.619 as a separate bill. Please write an email to your representatives tomorrow and ask them to co-sponsor the resumption of Medicaid for psychiatric hospitalization and to institute Assisted Outpatient Treatment progams, which would not only be more fair and humane to sick people and their families, but would also save taxpayers billions each year as our prison rolls decrease.

Thank you, Pam, for this forum and for the useful information that WagBlog always has. I will share the link to the Dr. Manny Show with many people at my Care2 Sharebook and at FreeSpeakBlog, where we often publish mental health news as well as other matters that have to do with promoting human rights for prisoners.

Mary Neal
Assistance to the Incarcerated Mentally Ill
http://www.Care2.com/c2c/group/AIMI

PS Please VOTE for H.R.619 to replace prisons w/ hospitals for acute mental patients. The link below will take you to OpenCongress.org where you can use your voice to say to our elected officials, “We care about the least of these, His brethren: naked, sick prisoners.” (Matt.25:36) http://www.opencongress.org/bill/111-h619/show

While many Americans celebrate the health care reform bill’s victory, please agree that millions of citizens should not be left imprisoned or live under the threat of prison because their health care needs were omitted. Put the “NATIONAL” into health care reform by supporting H.R.619: Medicaid funding for psychiatric hospitals instead of prison cells for mentally challenged people – a change that will save money and restore lives!

Thanks in advance for voting. Please invite others!

___________________________________________________

Dear Mary

I think you know that I was quite ill until starting in 1996 when Zyprexa came out, but not truly until 2005,  when a complete transformation occurred. However, when I relapse, I “relapse good” — as my medical record from the October hospitalization attests, with nearly constant locked seclusion or restraints for 6-8 days etc. Nevertheless, I am with you, though reluctantly, as I also know how terrible the side effects are of some of the older medications are as well as the newer ones, and the horrible state of affairs when a harried or burned out psychiatrist simply rams them down your throat without consultation at least after the acute psychosis resolves and you are able to discuss such things.

When I was in Manchester Hospital, I begged to be put back on my anti-convulsants and the Abilify/Geodon combination that had served me well for many months, believing, with reason, that I was suffering from a flare-up of my neurological Lyme disease, an illness that had always and invariably produced severe psychiatric symptoms. I needed, I knew, an increase of those drugs rather than a wholesale change to the “old drug” Trilafon. But did the doctor listen to me? No, he did not, despite my  ability to say as much to him, my psychosis consisting not of incoherence but of paranoia and command hallucinations to  harm myself in order to atone for being the Devil…I could and did argue with him, vehemently, and steadfastly, refusing to take the Trilafon, until he instituted a standing restraints order for every time I was non-compliant.

These are the sorts of things that trouble me about  forced treatment and/or outpatient commitment laws. It is not that I think people suffering from severe psychiatric illness do not need or deserve treatment, only that the treatments available are not always effective or tolerable. And until they are, I am not sure that the only way to go is only to force medication on everyone willy-nilly, not, at least against their protestations of extreme discomfort. At the very least every effort must be made to find a medication or medication combo that keep the psychosis at bay while making the person as comfortable as is humanely possible…which is difficult when a psychiatrist is saddled with a hundred patients to see in a week. It took Dr O and me six years or more to find  the right combination of drugs, and to titrate them precisely enough to treat my symptoms,  reducing them significantly while keeping unpleasant side effects to a minimum.

There is much about the treatment of the mentally ill that is so disgusting I cannot begin to cover them all here, though your comment is very thorough, which is why I have put it up  as a regular post. I appreciate your links to sites that do so as well. You did not mention one horrific situation: where under-utilized supermax prisons now house “uncooperative mentally ill prisoners” whose lack of compliance or cooperation is due solely to their illness. Though it is well-known that such brutal conditions drive “normal” or reasonably sane prisoners to insanity, can you imagine the brutality of forcing a psychotic individual to reside in such isolation? (Note however that in years past, as you know, isolation and seclusion of disruptive patients in hospitals was also the norm, since “overstimulation” from the outside world was considered to cause their agitation…I have been in hospitals where, in bare seclusion rooms, I was not permitted access to letters or phone calls, visitors or even reading material. As for restraints, they too were inhumane as I was shackled SPREAD- EAGLE, to the four corners of the bed and not, as even then was considered proper, with my legs straight and my arms in position by my side. This treatment moreover was considered normative for agitated psychotic patients rather than cruel in the extreme  as recently as the 1980s in some municipal hospitals in Connecticut.

I  recommend the book, THE DAY THE VOICES STOPPED, by the late Ken Steele, who wrote of his experience as a 14 year old with the savage isolation policies in NY hospitals in the 60s and 70s,  treatment that today seems literally incredible.

Well, I thank you for your contribution to my blog, Mary. You are welcome here at any time. I will post as many of your comments as I can.

Sincerely,

Pam W