In truth, if you came here to find out how not to live a regulated life, by which I mean one not bound by routines and self-made Rules with a capital R, I may disappoint in what follows. Why? Because while I trust that my life, lacking as it is in almost all “regulated structure”, has a “mind of its own” and in that sense as much purpose as any other, I confess that this free-spirit eschewing of everything and anything routine is less by choice than by temperament.
Not that I have not tried, mightily, to instill in myself the values of routine, attempting to establish even one single habit that might tame a few of these impulses to spontaneity that don’t in fact help me. Okay, phoebe, be specific, name one! Well, in point of fact, i do not eat, sleep or even brush my teeth on any routine or scheduled or regulated basis….This is not troubling to me in terms of the first two: i live alone and have no intimate relationship, so when and where I sleep or eat is really nobody else’s concern. But my mouth is full of dental work that cost a mint, so the fact that I do not brush my teeth…period, let alone on a regular or scheduled basis could be seen as a problem. If it were not for frequent dental visits and a family who at least saw to it that my teeth were taken care of, I might be lacking them altogether.
But if my title above enticed you, you did not come here to read about my lack of dental hygiene or the drawbacks to living as I do, free of routines. One might see me as either free-spirited or run-amock, depending on how you perceive my life-style of spontaneously going with the flow and hoping for or anticipating the best outcome. As I said, this is not entirely by choice, as I seem to thrive (mostly) on doing things on a “what do I feel like doing now?” basis, rather than according to any schedule. Temperament? Most likely…though I can say that I was not always this way, or so comfortable with being and living the spontaneous life. As a child I was known as the Neatnik, the one whose room was meticulous all the time, and who knew where everything was placed or kept, down to the toothpicks in my antiqued-in-6th-grade-secretary-desk, lower left hand drawer, upper right quadrant, in a handmade box, next to the pen nibs in another box…(you see what I mean?)
if i used to be neat to an extreme and thrived on order, what the heck happened? I shake my head, wondering about the transformation myself…it may be that I was wrongly “typed” as the stoic, neatnik child, when my true nature was much more free wheeling. I know my parents had to pigeonhole each of us, their children, in order to “make sense of us” but did so on the basis of what they wanted to see not on what was there by nature. But maybe, too, there was a change as I grew up, either temperamentally or as a kind of rebellion, and assertion of who I really am.
Most or many people I know could not live as I do, and would neither want to or find it comfortable. I cannot seem to live any other way. But I will also say that if you are comfortable with routines and schedules, go for it. Find out who you really are and not who your parents decided you were, way back when. You can’t do more than survive, which is to say, you can only THRIVE when you know and are true to yourself and to what your needs and feelings are.
Sometime I will write about Nonviolent Communication and how it changed my life. Talk about not being spontaneous! This is a system and a tool for resolving interpersonal conflicts as well as developing a better self-rapport, and while you can learn to use it spontaneously , at first it feels rigid and constricting and even artificial. (But so what? I mean, baking bread is artificial, and so is using any electricity or a boat to ferry you across a river…what isn’t?). But those skilled in NVC are also some of the most accepting, tolerant and loving people I have ever met…so even if I do it on more or less spontaneous basis, i aim for such a state of being.
Actually I “deserved” four-point restraints. I was “violent.”
But I want to explain what “deserving” restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut) means in 2014.
I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion and restraints when essential, when a patient is absolutely out of control and extremely violent, and cannot be controlled in any other way.”
Trust me, I know, because they have said this to me.
But what you need to know is that they are NOT talking about some 300 pound man hopped up on PCP, waving a machete. For one thing, that person, whom I believe to be largely mythical at least in ordinary psych units, or if real now largely confined to correctional and law enforcement settings, the person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I.
And let me tell you about me. I will turn 62 years of age in November. I am 5 feet 3 inches tall, weigh, maybe 110 pounds on a good day, and have been consistently described as “poorly muscled.” I am also unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the HOCC nurses/security guards knew and used to their advantage when subduing me. I also want you to know that I am a decades-long vegetarian on the principle of non-violence — to people as well as to animals. I have opposed the death penalty since I was a nine year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted “criminals” the way we do now.
Yet in every single hospital I have been in since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either physically holding me down by brute force, one person to each limb and one to my torso (this was at the only 2 hospitals that did not actually resort to mechanical four-point restraints– compared to the dozen others that did), they would routinely inject me with one to three drugs as chemical restraints.
I am the rule, not the exception to it, of their supposedly “extremely violent mental patient” who is so OOC — out of control — that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical example of the person they claim they absolutely must have the right to resort to violence against, for their own safety and mine.
Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, in the Emergency Department, this is what happened, and I kid you not: I came in by ambulance, involuntarily, in the sense that I did not want to go but was brought in by EMTs and given the “either the easy way or the hard way” choice by police. But I did not resist it or fight. I was not restrained in the ambulance. in fact, I was mute and merely handed them my med sheet and my detailed Advanced Directive, on the first 2 pages of which is the important information about my trauma history and the critical need to know points about how to deal with me.
When I arrived I was quickly shunted to the psychiatric crisis section and into a curtained off cubicle. No one took my cell phone from me, or the single book of my artwork that I had managed to bring with me. So I texted everyone I could for as long as I could. For a while I tried to obtain a crayon to communicate with, eventually and in desperation, writing with ketchup on the outer carton of my dinner container, begging for something to write with. Instead of helping me out, the head ER nurse penned me a note saying that I would not get anything to write with, that either I spoke out loud or she would not listen to me. How very odd and evil that she wrote this to me! She didn’t speak to me, she wrote it, as if I were deaf, even while saying that she knew I could speak and would not talk with me unless I did so… The idiocy of that act just sends sparks of rage through my brain even now. She later spied my art book next to me on the gurney, and suddenly rushed me, snatched it out from under my thigh and raced away with it, holding it triumphantly as if she had won a prize. I was incensed. Why hadn’t she just asked me for it? And how did I know what she was going to do with it? Would she keep it safe and sound? Actually, though, I mostly just reacted instinctively: Someone had stolen the only thing I had of my own in my possession, and she had simply snatched it away from me, without a word or even a polite request. So I did as anyone would do, I think. I raced up behind her and snatched it back! Well, that was a mistake. That was bad, that was bad bad bad. I heard people groan and swear. I was grabbed from behind by two security guards and the book was wrenched from me again.
Remember, I was mute so I couldn’t say anything, but I tried to resist, tried to gesture that the book was mine and she had no right too take it from me. Instead of explaining that she would protect it and take care of my things, people started talking about how I had attacked the nurse, had assaulted her…She told them to put me in seclusion. The guards dragged me, resisting in panic, towards this hidden room, and I heard another nurse warn them of my medical history with a torn left rotator cuff. Hearing this, the guard on my left side, grabbed my shoulder and wrenched it higher until I let out a blood curdling scream, wordless but vocal. “Aha! I thought you could make sounds!” he said in triumph, wrenching me again until I sobbed in agony. Then they dumped me in the seclusion room, with only a hospital johnnie on me, and locked the door behind them.
Even though I had no words to speak my rage and panic, I screamed and screamed. They came through the door with needles, held me down and injected me. Then, when in a rage reaction, I disrobed, they decided to four-point restrain me. I heard a guard say, “we really have no reason to restrain her, you know.” But the other said, “It doesn’t matter, we will find a reason.” So they did . Terrified, I did not resist, because they held me down by the left shoulder causing me so much pain I was afraid they would hurt me permanently. I also hoped upon hope that if I didn’t resist, they would let me out quickly. Believe me, I had been through this routine enough to know what to try to do to minimize the consequences and the damage…
Fast forward to my being sent to the psych unit, about which I no longer had any choice, being labelled violent now and OOC as well as mute and schizophrenic (I hate that word but they used it). When the doctor who admitted me, Dr. Michael Balkunas, came to see me the next day, I was still mute. He asked me how I was and I gestured my need for a writing implement to answer his questions. He coldly told me that he would not speak with me if I would not talk out loud. Then he got up and walked out the door, with nothing more to say. I was by then so upset and outraged that I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder. This was not intentional, not that I recall, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ER on his orders, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal. Enraged, his face beet-red, he bellowed at the nurses to order guards to force me into “Seclusion! Seclusion! Restraints! Restraints!”
Before I could do anything or even assent to walk there, I was bodily dragged down the hall by my injured shoulder, to one of the most horrifying seclusion suites I have ever seen. A set of two cells, each lockable from the outside, completely barren and cold except for a concrete bed set into the concrete wall, with a plastic mattress on it. Nothing else. No commode, no bed pan, nothing but two obvious cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door a room away, so I was thoroughly alone and soundproofed from the rest of the unit, and walked away. I panicked immediately, and urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Not a word. I did not even understand at that time that there was an intercom they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I KNEW what would happen, I knew this because it was SOP. But I was freezing in there, with the A/C on full bore and at 110 pounds and a history of frost bite I cannot tolerate being cold. I also had NO inkling as to how long they would keep me there, one hour or sixteen. All I knew was that I could not tolerate the isolation, one, and I would not survive the freezing temperature, two.
So I took the urine-wet johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it as if to strangle myself. It was useless of course, because I couldn’t keep pulling it without letting go and then I would breathe. And I didn’t want to die, I just wanted it to LOOK as if I were strangling myself so someone would come in and I could explain that I was COLD! Well, finally the intercom crackled to life and someone said, “Pamela, take that away from your neck now.” I gestured something that clearly indicated, “I’m freezing cold!” The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but in clear gestures, “I need something warm to wear!” Well, this was a battle I was destined to lose, of course. And eventually but not so quickly as to indicate that they were seriously concerned about my safety, guards and nurses entered the room, along with a gurney, and they did as they had threatened, injuring me in the process. They grabbed me and hoisted me onto the gurney and locked me into leather restraint cuffs, in a painful and illegal spread-eagle position, despite my groans of pain and protest, then they refused even to cover me with a blanket. Someone threw a small towel over my lower torso and that was all. They they positioned an aide at the door and trooped out. I screamed my lungs out, and gestured my desperate need for water and warmth, but the aide simply ignored me, saying she wasn’t permitted to talk to me, and couldn’t get me what I needed. That was how violent I was. And that is how the most violent patients are treated and why they MUST be restrained, for their own safety and the safety of others…Right? NOT! ALL the other times I was secluded it was because i was disturbing the peace of the unit. I was loud and complaining, or simply “agitated” because i walked the halls too much.
That was it. That is the rule not the exception, and if you read my posts about my incarceration at the Hartford Hospital Institute of Living in the winter of 2013 you will get a similar picture. I am not the 300 pound crazed man on PCP wielding a weapon, no, I am a small, elderly woman who is non-compliant with the unit milieu and wants only to be warm…that is about it. But each and every hospital claimed that I had to be restrained, that they had NO alternative, that I was so violent that they had no choice, even though it often took only one or two people to do so, because I didn’t resist or say a word, just lay there while they pinioned me to the bed. Now you tell me that restraints and seclusion are necessary ‘modalities of treatment” that cannot be done away with because they might be needed in an emergency. Emergency schmergency. I am that emergency and they were and are NEVER needed, EVER.
When I was at New Britain General Hospital in the spring of 2014, the security guards stripped me naked and left me in the freezing and barren seclusion room…This is a depiction of a younger woman largely because no one gives a damn about what happens to a 61 year old woman anywhere..but the seclusion room is pretty danged accurate.
I just was released from the Yale New Haven Psychiatric Hospital and i regret to say that it was far from the kind and gentle “soft place to land” in a crisis that i remembered. Partly this was my fault, for wanting to not take the meds that i already knew would be forced on me, quite despite Dr Milstein’s assurance to my outside psychiatrist that he would never force meds or Zyprexa on me as “it doesnt work.”
No, I did not know that meds would be FORCED on me…Not until Robert Ostroff MD took over my care and made it clear he did not give a damn how I felt. He decided to punish me with massive doses of Haldol when I refused Zyprexa, and I know he is of an age to understand what he was doing. One, he is a Yale Physician, so he knew of the hearings in Congress back in the 70s where the Russian dissidents were complaining of TORTURE by Haldol injection, and where Congress actually decreed that the drug was in fact an instrument of torture when use on Russian citizens…He KNEW what he was doing to me, PUNISHING me. He just had the power to do it and could. So he did. He NEVER saw me to talk to me, NOT once. No, he just oversaw torture, and while Robert Milstein, MD (basically a good guy, if deluded into believing that psych meds are good for people) was supposedly on vacation, he too was available and did nothing to stop this. For that I do not forgive him…Or, I forgive him, but will never trust him to treat me again. No, I will never go back there.
In fact, I’m here to say that no hospital psychiatrist can be trusted when they promise not to force you to take drugs…that is what they are paid to do and are largely paid to believe in. It did me little good to try NOT to sound like i was ranting and raving esp when attempting to persuade either doctor or social worker in hospital to read Robert Whitaker’s ANATOMY OF AN EPIDEMIC or even borrow my copy of his MAD IN AMERICA, both books i find life and mind changing in a major way, even a year after i started reading them for the first time.
I dunno what to do though, in terms of meds. I function fine in between times in hospital, mostly. And so are the Abilify and Geodon helping or simply not Not preventing a relapse when it comes? There is reason to think that Geodon may be damaging my heart, slowly but surely. My EKG said something Dr Milstein refused to explain about a “probable infarct” but was that me, my heart or some general info on the EKG sheet? I wasnt allowed to look at it long enough and NO ONE answered my questions about it. Probably fearing i would stop taking the offending medication, which was true and i did anyway so they ought to have talked to me honestly.
But honesty is not a general policy in brutal psychiatric units where they restrain you, holding you down and bruise you to give you injections of Stat meds that are really ordered only because someone with the power to order them got angry and resentful…
I cannot sugarcoat my own demeanor during this stay. I was not a pleasant patient to anyone most of the time. And at the worst times i was likely considered horrendous. I screamed daily at the top of my lungs, i resisted their treatments physically and violently, i defecated on the floor of my room and even put handsful of shit across the walls, and apparently i even threw a cup of coffee at someone…though i do not remember doing this and the report may have been distorted by second hand information about me, coming back to me. But i was a horrible patient and one aide even called me, every chance he got, a dog, a pig, a swine….in covert secret ways, audible and openly but when no one else was around to hear him except the other aide who would back up his story that it never happened.
On the other hand, there were a few kind and compassionate understanding people who did not throw my smearing shit in my face or even take my calling them horrible names (bestowed on my vocabulary by a former friend who called me them) personally.
I need to enlist just such people for private duty help for the next relapse, if it should happen…but how? Ads on hospital cafeteria walls? How to vet the sign-uppers, so i do not get attendants that will abuse me in my own home? How to trust, and when, what they or references tell me? So many references are positive and therefore lies that they are tantamount to useless unless secretly negative!
Decisions decisions….must be made well before anyone is needed to help me at home….one to one, constant observation-plus!
Well, i am still recuperating, and worried about deep hip pain though seemingly improving is scary, reminding me of the avascular necrosis bout i had about five years ago. Was it meds induced? possibly because it healed magically in a month post radiographic dx, with a stay in psych hospital and change in those meds. But if i dont withdraw abruptly from, say, topamax or geodon, but slowly, will the hip pain continue, or evolve into worse than just, say, pain, but real bone destruction ans disability? Can i take any risks at all at age 60 with drugs that have no proven track record research wise, and seem to help me but may only being doing harm?
As may be obvious from the brown paper at the sides, this collage is very much unfinished, both as to content and as to medium. What I mean is, this is a kind of painting with paper, so I am so far dissatisfied with, say, the blue curtain with yellow lining, because it still looks rough and is not clearly a curtain blowing in the air coming through the open window. Ditto, the open window, which is not clearly even a window, except by virtue of my titling it such. But when I finish with it, I hope all these mysteries will be clearer, including the surreal placement of a hand mirror outside an upper story window! (I said it was surreal, didn’t I?) But what I cannot help is whether or not the viewer recognizes what it is that is on the bed. Some people simply do not know what restraints look like, and have variously interpreted them as guitars or snakes or what have you. To me, it is obvious. But I guess most people have not been in such a situation, and have no conception of what they might be looking at. Perhaps a more suggestive title would help?
Another important feature of the “painting” is the frosted glass window, with the mysterious something going on behind it, again left up to the interpretation of the viewer. If you understand that this is a restraints bed, and that the window is open…what could be going on outside the seclusion room? And why is the window open? Should the bed be empty? If you could see this very large collage – 5 feet by 5 feet — up close, you would see that the mirror overhangs a very detailed garden, with all the trappings of well designed backyard floribundance, so to speak. There is a little table and benches and other accoutrements, but also a path leading up to — a garden gate, which opens onto a field and freedom.
As I worked on this collage, I was in a state of acute anxiety — with tremors and shaking and palpitations I did not understand. And every night I would weep with bodily but not conscious memories of the recent brutalities I experienced at Manchester and Middlesex Hospitals. At Natchaug they understood how degrading and traumatizing such treatment had been, and indeed how re-traumatizing. Because indeed, I had already been traumatized many times before in the 80s and 90s and early to mid 2000’s by what I thought was SOP use of such measures. Instead, when those recent hospitals used them, cruelly and inappropriately, at a time when I knew their use was frowned upon and had been severely curtailed, it not only re-awakened the original trauma, but in a very real sense put me in emotional touch with it, the pain, the terror, the horrendous humiliation for the very first time.
I am not by any means over it. As I work on my memoir sequel, BLACKLIGHT, I am also slowly going over my hospital records with Dr Angela, aka Dr C, and it is a gut-wrenching task that leaves me drained and tremulous. But if it succeeds in returning my memories to me, all of them, I shall consider it worthwhile.
Finally I have finished the collage here with the background completed and the candy foil earring (I saved foil from innumerable chocolates…and they have no come in handy as I know eventually they would. What do they say? Everything can be an art supply, looked at with a creative spirit. Who says that? Well, I dunno, I guess I do! 8D
I call her Christabel, who was one of the occupational therapists in the hospital this past April and May (all of the OTs were great.) She was a wonderful woman who was the one person who consistently treated me like a human being at a place where I was often not treated much better than an animal or a bad child. Consequently, I never once, as I recall, had occasion nor impulse to scream at her in rage or frustration. Lkewise she never felt it incumbent upon her to withhold from me such ridiculous items as gluesticks or magazines, the sort of carrots with which the nurses attempted to “tame” me. That is, negatively, by taking them away from me until I ‘behaved’ according to their rigid standards. Never once did they acknowledge what I had begged them to understand from the moment I walked in there, which was that I suffered from Lyme disease-induced schizophrenia, and that both the rage episodes and my impulsivity were uncontrollable, (i.e. literally OUT of my control, and “not me” — as the weekend doc herself, Faye H., who knew me well from treating me for years in the past, noted several times in dismay).
Be that as it may, when the nurses, or one of them, the one who really hated me, refused to grant me permission to use a gluestick one afternoon in order to work on this collage, it was Christabel who came to my rescue, by bringing some from the OT office, without so much as a word or caveat to “not tell the nurses.” She simply handed them to me, along with a handful of new magazines to tear colored scraps from, so I could continue work on my face, which I had only just begun.
Everyone asked me, as it was coming together, if I was modeling it on anyone. But the truth is, though I call it Christabel, it is more in honor of her, than intended to be a true likeness. True, she is African American, and has very close cropped hair, but that is as far as the similarities go. In fact, the face is pretty much imaginary and generic. I took the features from, well, my mind, mostly, though I used various faces from magzines to give me an idea of how the light would fall and create shadows, and how the various contours of the features would look. Also to give me a better idea of proportions. The nice thing about these kinds of collages is that paper is very forgiving, so if I made a huge mistake, and made the nose too big or put the lips too close to the nostrils or, as I did, make the eyes too small and close together, all I needed to do was paper them over and start again. In fact, the more layers I used, the stiffer the underlying “post-it note” kind of thin paper foundation became, which proved a good thing when it came to finishing off the edges and finding a way to hang it. I cannot f rame it, as it is 46 inches by 32inches, approximately, and formally framing it would cost a mint. but I polyurethaned it, one, so it would not distintegrate, and bound the edges neatly, and think I will attach a dowel or piece of thin wood at the top to which I can affix a wire and hang it by that. The person, the woman who runs the solo shows every month at DHMAS in Hartford, said that though everything was supposed to be framed, basically as long as it can be hung by a wire, my plans sound fine.
Well enough of this. I think the new photo shows how I finished the face better. Though I could not get the bound edges into the photo alas.