This is an extremely interesting article. Not for everyone, perhaps, but well worth reading.
Category Archives: Mental Illness
“The Scream” plus an update…
- In the midst of re-experiencing trauma, sometimes all you can do is scream, even if it is silently and only in paint…I hope this speaks to some of you who may feel as I do, often or even just once in a while. It took a lot to get this out, but I felt I did convey what I felt.
I am reposting the next one, a very painful if a not very skilled drawing, because I made some changes. I put a very mean smirk on the face of the woman in the front, who is meant to be facing us and pointing over her shoulder, though it was hard to get this in, given how little space I’d left myself… Also, I wanted to change the face of the man kneeling on me, and strength the look of the grip of the hands on me. If you compare the old version to this one, you will also note that I am purely naked here where as in the other, I have underpants on. This is the accurate one, but I didn’t understand that at the time I started the drawing. Alas, or perhaps this is good, I am rapidly recalling things I had not for two years about my experience at Middlesex. At least I remember stuff that happened BEFORE April 28th. For the other two restraints incidents, I still have no recall whatsoever or what I suspect is mostly confabulation drawn from what I read in my chart, though of course I cannot be certain. In any event, what I am remembering is not good at all, and I cry a lot…it is very difficult, and I feel so very very alone, because NO ONE understands and can talk to me, or more to the point can even stand to listen to me talk or cry about it. But it is difficult even to keep it under wraps all the time. If you have survived trauma, I think you know how it is. And that is why I avoid people when I think I cannot be “good enough company.” I don’t want to bring my friends down, but I cannot control the tears and shakes when they start…But the picture forthwith. Although it is disturbing as is, be aware that in the real incident, there was a great deal more violence, and more guards and staff members involved…these are just a paltry few. I simply didn’t know how to draw a crowd or a crowded room yet!
This next picture I did as an attempt to express the guilt and shame I feel over having been traumatized at all. But I do not think I succeeded at all. Why? Because it became too intellectualized, with symbols like the Scarlet A and the guilt-crucifix, and even the hands wringing in shame, rather than pure expression…I want to do it over again if I get inspired to do so.
The next three drawings were just “fun” or for practice ones. The first two are presents for Tim, simply because he likes cars and is so wonderful to me. The third was an exercise in drawing two people together, and was copied from an “old master”, the name of whom I simply cannot recall at the moment. It might have been — nope I don’t dare guess! I would have to get up and search for the book, and I ain’t gonna do that at the moment — too danged lazy. Anyhow, here are 1) two 1973 Volvo Sportswagon ES 1800 2) jaguar XJS and 3) the sketch taken from the old master’s painting.
- 1973 Volvo ES 1800 with British Racing Green “colour” in the background to represent the color of Tim’s car.
- I sketched this detail from an old master’s painting found in an art book. Wanted to capture the two women together, and the angle of their heads (I actually didn’t do a very good job but there you are!)
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NOTE: As I wrote this, “dream” talk, that is to say, nonsensical writings seemed to keep appearing in the middle of what I wrote. I seemed to find myself in another world every few minutes. I would write about that world, then “come to” and start writing about the subject below again as if nothing had happened. But when I reread the paragraph it made no earthly sense whatsoever, being an amalgam of two entirely different trains of thought. So a caveat: if some of what follows devolves into gibberish at any time, forgive me, and be patient. You can email me to alert me, if you wish, that would help. But otherwise, know that I will eventually come back more able to proofread and catch such idiocies…and fix them. For now though, you are on your own. (The reason for these brain blips, I think, may be, but may not, the fact that I took a very small amount of Zyprexa today in order to be able to read and concentrate. 2.5 mg 2X a week should not make me gain weight, according to Dr C, But we thought it might do some good, without doing the usual harm. So I agreed to try it out once more, just at the minimal level as a PRN. Well, I find that I am very sleepy, have been ever since I took the pill, except for when I took a walk and for about 1/2 hour afterwards…and I do think that I slip into dreamworld while awake, and literally dream while writing this. Hence the gibberish.
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I have put the statement I read to the CEO and various administrators etc of Middlesex hospital on Youtube if anyone is interested in hearing it read outloud. Do a search for “Psychiatric restraints and seclusion abuse” and you should be able to find it if this link doesn’t work: http://www.youtube.com/watch?v=vhZybDwMbzA (I realize that I read it without much feeling, but it is hard to do so accurately and also look up at camera, and read without losing my place. Anyhow, it might be worthwhile to check it out.
The newest sorta development in the “case” this week was that a lawyer from the hospital, or someone who told my advocate he was a Middlesex Hospital lawyer, asked Wiley R (who is behind me 100%) “what does Pam want, what can we do to have her drop the complaint or withdraw her complaint to the DOJ and Joint Commission?”
Now everyone I told this to almost to a one, and immediately said this meant, “We are willing to pay handsomely in order to buy a gag order from her” I had trouble digesting such crassness, but to a one, those to whom I related the words of this inquiry told me the lawyer was insinuating something about paying me off. I mean: money. I felt slimed, completely slimed. For a few days this was the sole topic of my conversation, but to make a long story short, after I had decided to ask for several sessions with the hospital psych unit staff, educational sessions with me, to teach them how better to deal with patients, and have them experience forced restraints themselves…and so forth, my brother and I met with WR my advocate from the Protection and Advocacy (for persons with disabilities and mental illness) Office, and he informed us that the lawyer really was offering nothing, not even an official apology. Clearly, if so, then my real desire, to do hands on, face to face work with the staff that had so tortured me, was going to be out of the question, utterly forbidden. So we just decided in practically the same words, to let them “swing” in the wind.
In point of fact, when WR said that the DOJ might bring them up “on charges” if it was warranted, I asked him why I didn’t do that myself. He looked at me, and then narrowed his vision looking at a point beyond me. “Hmm, let me ask around and I’ll see what we can do.” I hastened to assure him that it wasn’t malpractice I was after. I knew that I had no real case, even if the statute of limitations hadn’t just run out a week or a few weeks ago. After all, what lawyer is going to take me on one a contingency basis, and what jury would find for me in any event, seeing as how I did not die in their “care” nor suffer “grievous BODILY injury” which of course is all that counts…as usual. I am not sure what sort of case I would have in any sense of the word now at all…But as I told him, that is in his hands, and certainly is his bailiwick (and if not his than that of my lawyer-friend, Sharon Pope’s. If there are other “cases” to be made of any sort, I am more than game, I am ready and on alert to go and do whatever is needed in the pursuit of justice and reform of the Middlesex Hospital psychiatric system. It was really shameful, and despite the Public Health Department’s so called investigation, it was such a shameful joke, that despite WR’s impassioned plea to investigate MY case, and the psych unit in particular, they did no such thing. All they did was go back to spring 2011 (ie looked at the records of the entire hospital, or one of two representative records from most of the units, except for Psych so far as I could determine…) and do a random case study to look for general evidence of irregularities. Sure, they found some, and one case even involved the ER use of unnecessary or at least excessive use of restraints in a dually diagnosed young man…
But NOTHING was even looked at that had anything to do with what they did to me, or even the psych unit in particular. NOTHING was specific to my complaint, so I don’t know how they expected this evaluation to give them any sort of reasonable results. They may or may not have censured or sanctioned the hospital. I did not read the entire huge file of support the bill got over the years. But I got the drift and the worst punishment meted out for repeated violations seemed to me to be a whipping on the wrist with a flimp ramen. Period.
Yet I was punished by the psych unit staff time and time again.
I know, I know! I was loud, I was angry, I was impossible to “handle” — I know this. Partly this was par for the course for a Lyme disease flare up for me. But I think Lyme wasn’t all of it. Why else was I so irascible (aside from them giving me Abilify without the requisite Geodon…) if not in response to perceived and real threats from them? I am not generally irritable and snappy at Natchaug, and never was at Hartford Hospital in the 80s and 90s. ONLY at hospitals where the standards of care are coercion and control and abuse is the name of the game do I react with anger and hostility…I wonder why.
More to tell, more to say, but as I wrote in the first paragraph above, sleep is overwhelming my desire to do just about anything. I will try to get back to this asap.
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.
Poem about My Father and Me
TYRANNOSAURUS REX
by Pamela Spiro Wagner
Tyrant, they called you, emperor, bully,
the first time I was in the psychiatric wing.
You finger-painted, yes, getting down on your knees
to smear pigment with stiff abandon
but afterward, in the hall, when I froze, contorting,
you let the whole world of the ward know
your scorn, imitating me, calling me “crazy.”
I seemed finally better. I came home.
But when I failed you, leaving med school,
an embarrassment and a humiliation
who couldn’t even keep work as a clerk or waitress,
you claimed suddenly “three children” not four.
Between us interposed silence for thirty years
as I learned to live on $3 a day, to write my life
into poems when I had words to share.
Years passed in “the bin” and out “on the farm,”
as I called the hospital and those programs by day
that structured my life. But hospitals shape-shift
after a dozen or more and there are decades
of my life that are lost even to memory,
each melding into another like shadows
on night-lit walls in carbon paper alleys.
One keyhole through which I see the past:
Shock treatment with its drowning anesthetic drops
and stunned awakenings. Then there you are,
standing in the seclusion room door
resuming conversation as if begun just yesterday
not thirty years before, no older, or at least
no grayer than “Daddy” again, shorter, yes,
but kinder. What could I do but respond?
I never dreamed that at eighty-three
you’d lose your fire, habanero, old Nero,
or that I, Rome, would ever stop burning.
———–
The above poem tells a long story in a few words, though necessarily only part of it. I have to leave it there for now, as I lack the energy to flesh the story out further. But in later days, after the memorial service and as the spirit moves me, I will try to write more. Thanks for your patience. As a good friend said, It — grief, tears, feeling alone or lost– comes in waves, but when it hits, it hits hard…
Recovery: A New Definition
My comments on this article will follow it. If I can I may highlight points that I particularly wish to discuss.
New Working Definition of ‘Recovery’ from Mental Disorders and Substance Use Disorders
ScienceDaily (Jan. 5, 2012) — A new working definition of recovery from mental disorders and substance use disorders is being announced by the Substance Abuse and Mental Health Services Administration (SAMHSA). The definition is the product of a year-long effort by SAMHSA and a wide range of partners in the behavioral health care community and other fields to develop a working definition of recovery that captures the essential, common experiences of those recovering from mental disorders and substance use disorders, along with major guiding principles that support the recovery definition. SAMHSA led this effort as part of its Recovery Support Strategic Initiative.
The new working definition of Recovery from Mental Disorders and Substance Use Disorders is as follows: A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.
“Over the years it has become increasingly apparent that a practical, comprehensive working definition of recovery would enable policy makers, providers, and others to better design, deliver, and measure integrated and holistic services to those in need,” said SAMHSA Administrator, Pamela S. Hyde. “By working with all elements of the behavioral health community and others to develop this definition, I believe SAMHSA has achieved a significant milestone in promoting greater public awareness and appreciation for the importance of recovery, and widespread support for the services that can make it a reality for millions of Americans.”
A major step in addressing this need occurred in August 2010 when SAMHSA convened a meeting of behavioral health leaders, consisting of mental health consumers and individuals in addiction recovery. Together these members of the behavioral health care community developed a draft definition and principles of recovery to reflect common elements of the recovery experience for those with mental disorders and/or substance use disorders.
In the months that have followed, SAMHSA worked with the behavioral health care community and other interested parties in reviewing drafts of the working recovery definition and principles with stakeholders at meetings, conferences, and other venues. In August 2011, SAMHSA posted the working definition and principles that resulted from this process on the SAMHSA blog and invited comments from the public via SAMHSA Feedback Forums. The blog post received 259 comments, and the forums had over 1000 participants, nearly 500 ideas, and over 1,200 comments on the ideas. Many of the comments received have been incorporated into the current working definition and principles.
Through the Recovery Support Strategic Initiative, SAMHSA has also delineated four major dimensions that support a life in recovery:
* Health: overcoming or managing one’s disease(s) as well as living in a physically and emotionally healthy way;
* Home: a stable and safe place to live;
* Purpose: meaningful daily activities, such as a job, school, volunteerism, family caretaking, or creative endeavors, and the independence, income and resources to participate in society; and
* Community: relationships and social networks that provide support, friendship, love, and hope.
Guiding Principles of Recovery
Recovery emerges from hope: The belief that recovery is real provides the essential and motivating message of a better future — that people can and do overcome the internal and external challenges, barriers, and obstacles that confront them.
Recovery is person-driven: Self-determination and self-direction are the foundations for recovery as individuals define their own life goals and design their unique path(s).
Recovery occurs via many pathways: Individuals are unique with distinct needs, strengths, preferences, goals, culture, and backgrounds, including trauma experiences that affect and determine their pathway(s) to recovery. Abstinence is the safest approach for those with substance use disorders.
Recovery is holistic: Recovery encompasses an individual’s whole life, including mind, body, spirit, and community. The array of services and supports available should be integrated and coordinated.
Recovery is supported by peers and allies: Mutual support and mutual aid groups, including the sharing of experiential knowledge and skills, as well as social learning, play an invaluable role in recovery.
Recovery is supported through relationship and social networks: An important factor in the recovery process is the presence and involvement of people who believe in the person’s ability to recover; who offer hope, support, and encouragement; and who also suggest strategies and resources for change.
Recovery is culturally-based and influenced: Culture and cultural background in all of its diverse representations, including values, traditions, and beliefs, are keys in determining a person’s journey and unique pathway to recovery.
Recovery is supported by addressing trauma: Services and supports should be trauma-informed to foster safety (physical and emotional) and trust, as well as promote choice, empowerment, and collaboration.
Recovery involves individual, family, and community strengths and responsibility: Individuals, families, and communities have strengths and resources that serve as a foundation for recovery.
Recovery is based on respect: Community, systems, and societal acceptance and appreciation for people affected by mental health and substance use problems — including protecting their rights and eliminating discrimination — are crucial in achieving recovery.
—————————————————————
At first, I admit, I read the basic definition of recovery and was unimpressed, in fact massively under-whelmed. All I could think was: “A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential” pretty much describes how anyone should live life. What is so unique and different, I wondered, that this should say anything about recovery from mental illness or substance abuse or that we should care about it? I almost threw up my hands and neglected to finish the article, which would have been a pity as it was worth reading, even if some of the conclusions were a little “pie in the sky,” given the economy and current attitudes towards “entitlements” and public services.
Health, Home, Purpose, Community. Four essential supports for anyone who is attempting to sustain recovery. But as the red words make obvious, it is hard to have a safe and secure home when you don’t have a job, and it is impossible to find a job when you have never worked before and are only just now entering the workforce years late, even as so many others, vastly more experienced, are being laid off. So without those, independence, income and resources go out the window, and with them often go the hope that things can change. Surely if this is often the case for “normal” people, we should expect it also for those with substance abuse problems or mental illness.
Poverty is draining, mentally, physically and spiritually. And it does not foster recovery. But it is a fact of life for many of those with addiction problems and/or mental illnesses. As so many researchers, sociologists and psychologists know, raising oneself from poverty, even in good times is difficult. In hard times such as these, unless you happen to be lucky enough to have a family with resources (in which case you are not truly poverty-stricken) or to reside in safe subsidized housing with enough foodstamps to live on, you are out of luck. How can anyone expect recovery to blossom in such circumstances as hunger and homelessness, not to mention a lack of medical care and medications…But I agree, if health and home can be obtained, then purpose and community can be sought, and the four are indeed recovery’s under-structure; without any or all of them, a person’s stability is easily undermined.
I really liked the guiding principles of recovery, though. Hope is the sine qua non of recovery. If you do not believe that you can get better, do something, feel better, then you will never get there. It once helped me, I thought, that others had hope for me, kept hope alive when i had no hope. And perhaps it did. Because it kept me alive, at a minimum. But it did not help me recover. It was only when I started to feel some hope of my own that recovery began to be possible. In fact, I believe it was only when I began to take up art, teach myself something new, and discovered a brand new interest, talent and passion, that suddenly something opened up in me, in my brain and heart and soul, and hope sprang forth. I had a purpose. I had a purpose, for the first time in decades. I had always had writing, but somehow this was different. For a long time I wasn’t sure why. Then it occurred to me: even if I was only drawing at a table, it was physically active, which meant that it woke me up rather than being dependent on my being sedentary and staying alert. That was the first joyous thing about art: it stimulated me, it kept me awake rather than by its sedentary nature putting me to sleep. I loved writing, never get me wrong on that, I used to love reading when I could attend to books, but because of narcolepsy it was so terribly discouraging that whenever I sat down to write or read I had to battle daily the demon of drowsiness. No matter what I did. Nothing ever helped for long, not even Ritalin. Not, exercise, not diet, not sleeping at night, not, well, nothing. I found Zyprexa such a miracle drug, one that helped me attend and read, but that, that was so sedating in and of itself, that without mega doses of Ritalin, I could barely stay awake to read a few pages.
Somehow, though, art found me, and with it hope was roused. Simple as that.
Or maybe not so simple. First of all, I had to give myself permission to do art. I had to say, it is okay if I don’t write all the time, art is “just as good” as writing, even if my father looks down on it. Many people think art is even better than writing! And I do not have to live to please my father, god knows, though his capacity for devastating judgment is ever mauling my shoulders like a great lion. But what he likes and values, are not absolutes, they are opinions not morals. He is not god, God knows, and I do not need to listen to or absorb what he tries to get me to take in, subliminally or explicitly.
As the next Recovery Principle implies, recovery comes from within, is person-driven, so I had to tell myself that no one could tell me how to do my life but me, and if art kept me alive and awake, so be it. Maybe it wouldn’t be his choice, but so what. It wasn’t his life either, was it?
Recovery cannot be coerced or compelled, only determined by the individual. I would add that treatment too ought to be person-driven, person-determined. That treatment, in-hospital or out-patient should NEVER be coercive but person-centered and self-determined. Why? For the same reason in both cases: It works best that way. Coercion never works; it may appear to but it only breeds trauma and ill will and resentment. It doesn’t foster either health or recovery. Period
However, that Recovery is holistic? While I agree, I had to laugh at the following: “The array of services and supports available should be integrated and coordinated.” I dunno about the “array of services and supports” in your state, but around here there ain’t no such thing…I mean, there are very basic services, like Foodshare and the Food Pantry and hospital inpatient units. But aside from that, and the visiting nurse service that provides/assures medication administration and that grows more precarious every month, I dunno about anything that counts as an “array of services and supports” in this state. I do for myself because sure as shooting the state isn’t going to provide it. Array of services and supports, my eye! You get an appointment for medication every 3 months, in a clinic, and that’s it. And as for integrated and coordinated? What a joke. Who is going to do that? That is like the Centers for Medicare and Medicaid setting new strict regs for seclusion and restraints, and making accreditation of hospitals dependent upon their proper use, and then when it comes time for their yearly review, the psychiatry service isn’t counted or even looked at. Anyhow, I am digressing more and more as I go, I apologize.
Finally, as you know if you have followed my blog, I have had many words to say about traumatic experiences, so I am appreciative of these principles taking the role of trauma into account. If I may read between the lives, since they are talking about “services and supports” being “trauma-informed” perhaps they do mean to speak to the seclusion and restraint issue, as well as the fact that many people have been traumatized and should not be coerced or re-traumatized by treatment. The final passage about respect, however, says it all. No one would have to say a word to anyone providing services and supports about being trauma-informed, if only those needing treatment for substance issues or mental illness had always been treated with respect and dignity.
My apologies for the ineloquence of my writing today. I am coming down with a cold and am not writing up to par. Perhaps the next time I will be back to my usual self.
Shock Treatment (ECT) in 2004
(Edited in 3/2012 . Note that all names have been changed back to their originals except for names of the people involved. Although in Divided Minds, we were forced by the publishers to disguise everyone, including the hospitals, here descriptions of people once changed to “protect them” have been undisguised. I write nothing but the truth as I remember it — I wrote a fair amount in my journals at the time and I referred back to my notes there in writing this — and I intend no libel in any event. In fact, I want to be as fair as possible and to bend over backwards in giving as much credit where it is due as possible.
Note, because many may have read this before, I want to
I hope this will be a chapter in BLACKLIGHT, my second memoir and a possible sequel as it were to DIVIDED MINDS.
The Ogre Has ECT: 2004
I am delivered like a piece of mail to the Hospital of St Raphael’s, on a stretcher, bound up in brown wool blankets like a padded envelope. It’s the only way the ambulance will transfer me between Norwalk Hospital and this one. The attendants disgorge me into a single room where de-cocooned, I climb down and sit on the bed. All my bags have been left at the nurses’ station for searching; this is standard procedure but I hope they don’t confiscate too much. An aide follows me in to take my BP and pulse, and bustles out, telling me someone will be back shortly. I sit quietly for a half an hour, listening to the constant complaint of the voices, which never leave me, sometimes entertaining me, most of the time ranting and carping and demanding. A thin, 30-something woman with curly blonde hair, residual acne scars that give her a kind of “I’ve suffered too” look of understanding, and rimless glasses knocks on the door-frame..
“May I come in?” she asks politely.
“I can’t stop you.” My usual. Don’t want to seem too obliging or cooperative at first.
“Well, I do need to take a history, but I can come back when you’re feeling more disposed…”
“Nah, might as well get it over with.” Then, nicer, I explain, “I was just being ornery on principle.”
“What principle is that?”
“If you’re ornery they won’t see you sweat.”
“Aah…”
“And they won’t expect you to be medication-compliant right off the bat.” I shrug my shoulders but grin, I want to think, devilishly.
“I see you have a sense of humor.”
“You should see me…”
“I’m sure we all will. A sense of humor is very healthy. But it worries me that you already plan not to take your meds.”
“I’ll only refuse the antipsychotic. Look at the blimp it’s turned me into.” I haul my extra-large tee-shirt away from my chest to demonstrate. Fatso, Lardass! Someone snipes. She doesn’t know it but you really believe you’re thin. Ha ha, you’re a house! Look at yourself! LOOK at yourself! Ha ha ha ha! The voices are telling the truth: I know the number of pounds I weigh is high, outrageously high for me, having been thin all my life, but I haven’t lost my self-image as a skinny shrimp, so I can’t get used to being what others see. The voices love to remind me how fat I really am. Only the mirror, or better, a photograph, reminds me of the honest to god truth, and I avoid those. I avert my eyes, or search the concrete for fossils, when approaching a glass door. Anything not to be shocked by what I’ve become. Pig! Glutton! It seems they don’t want to stop tonight…
I realize suddenly that I’ve lost track of the conversation.
“I don’t think they’ll allow you to do that for long.”
“Do what?”
“Don’t you remember what we were talking about? Were your voices distracting you?”
“Just thoughts, you know, plus some added insults.”
“You’ll have to take all your meds eventually.”
“Then they’ll have to switch me to a different pill, even if it’s less effective.”
She sucks the top of her pen and looked down at her clipboard. “So,” she starts the formal intake. “What brings you here to St Raphael’s?”
The voices break in there, again, confusing me. When I can get my bearings I tell her what made me transfer from Norwalk Hospital and why I opted for shock treatments. She takes a closer look at the mark of Cain I’ve burned into my forehead, writes something, then corrects me.
“We like to refer to them as ECT here. ‘Shock treatments’ brings to mind the terrible procedures of the past. These days you feel nothing, you just go to sleep and wake up gently. I know. I assist at the ECT clinic.
“Oh, I know, I know. I’ve had ECT before. I know what it’s like and it’s a snap. I asked for this transfer because I hope it will help again.”
We talk some more about why I’m here and what I’ve been through and the voices keep to a minimum so there’s not too much interference. She says she’s going to be my primary nurse and that she thinks we’ll work well together. I nod, thinking she’s pretty okay, for a nurse.
I’ve arrived after lunch, which is served at 11:30am so someone brings me a tray and I pick at it in my room. People come in and out of my room but only speak to me a second or two before they leave, a doctor does a cursory physical, someone takes me down the hall to weigh and measure me. I return to my room, too scared to do otherwise, constrained by the Rules of the voices. The first break in the afternoon is medications in the late afternoon, when someone tells me to line up in front of a little window near the nurse’s station. When it’s my turn, I look at the pills in my cup. Ugh, 20mg of Zyprexa, an increase, plus a host of other pills I can’t remember the names of. I hand the pill back to the med nurse. I’m not taking this, it makes me fat, I say. Give me Geodon. at least I don’t put on weight with Geodon.
“Sorry, Dr Corner has ordered this one. We can’t just go around changing doctor’s orders. You either take it or you refuse.”
I was in a quandary. I hadn’t even met the doctor and already I was fighting with her? Should I take it and argue with her later? But then I’ll eat my whole dinner tray and more. Better to start off with my principles intact, so she knows what I’ll take and what I won’t take. I hand the pill back. ”Sorry, I won’t take it.”
“If you decompensate further we will have to give you a shot, you know that, don’t you?”
“I’ll be fine.” I do a little dance step.
“Yeah, and look what you’ve done to your face. Come closer.”
Wondering what she wants, I lean in gingerly, fearing her touch, but she only takes a tongue depressor and smears some ointment on the big oozing sore.
“You’re done.Go eat some supper.”
At 4:30? That’s pretty early. I can’t cross the threshold of the dining room, the Rules the voices make forbid it. I cannot enter the milling crowd, suffering little electric shocks every time my body makes contact with another’s. Instead I retreat to my room. Sitting on the edge of my bed again, I wonder what to do. How can I get supper, or any meal, if the voices won’t let me go into the dining room?
Just then, the thin blonde nurse with the glasses, what’s her name, leans into my room. “Aren’t you hungry? There’s a tray for you waiting outside the dining room.”
“They made a rule I can’t eat with other people, and I can’t get in the dining room…So I can’t eat.” I read her name tag. “Prisca.”
She smiles and glances down at the tag on her chest. ”Oh, just call me Prissy, everyone else does. I hate it, but what can you do? What are you talking about? There’s no such rule. For now, I guess I’ll let you eat in your room, but that is against the rules and we’ll have to get you into the dining room eventually, whatever the voices tell you.
She brings in the tray: white bread with two slices of bologna and a slice of cheese tossed on top, a packet of mayonnaise, a small green salad in a separate bowl, with a plastic slip of French dressing, and a packaged Hostess brownie for dessert. I didn’t eat lunch, though they brought it in, so even this impoverished repast looks good to me and I eat everything, despite not having taking the hated Zyprexa. I curse myself for it, of course, and do some leg lifts and crunches for exercise afterwards. Ever since I’ve been refusing the drug, I have lost weight. Now I am down to 155 lbs from 170 the last time I weighed myself and I intend to get much thinner, since I started at 95 before medications over the years slowly put weight on me.
After supper the voices start in again, louder and louder, telling me how fat I am, how disgusting and terrible I am. I notice the clock hanging on the wall, which ticks audibly punctuating each sentence. The voices were carping, now they are threatening, and demanding…Finally, their all too familiar sequence segues into telling me I’m the most evil thing, and they don’t say person, on the planet. I’m the Ogre that ate Manhattan, I’m Satan, I’m a mass murderer, I killed Kennedy and deserve to die, die, die!
I’m wearing a heavy pair of clogs with wooden soles and almost before I can think about it, I know what to do. I heave one up at the clock, hitting it dead center. It crashes to the floor. Scrambling to grab a shard of the clear plastic cover before the staff comes running in, I lunge towards where I saw the largest piece fall, one with a long jagged point. I have my hand closed around it when someone tackles me from behind. He’s not very big and I can feel him struggling to keep me pinned. I almost succeed in stabbing myself, but he manages to engulf my hand with his two and press them closed against the flat sides of the shard.
Other people crowd into the room now and they pry the shard from me and grab my arms and legs so I’m completely immobilized. Then at a word murmured by one of the male aides who have materialized out of nowhere, they swing me up onto the bed, like pitching a sand bag onto a levee. I scream but they ignore me and strap my ankles and wrists into leather cuffs which have been rapidly attached to the bed frame: four point restraints.
I continue to scream and scream, but nobody pays attention. A nurse comes at me with a needle, saying it is Haldol and Ativan and proceeds to inject me. Although I am still crying that I want to die, that I’m Satan, the Ogre that ate Manhattan, that I killed Kennedy, I’m the evil one, the room then empties, except for a heavy-set café-au-lait sitter, who hollers louder than I do that her name is Caledonia. She pulls up a chair in the doorway, pulls out a cosmetics bag and proceeds to do her nails in spite of me.
I am told by Prissy that I scream most of the evening and keep the whole unit awake until given a sleeping pill and another shot. All I remember is restless twilight sleep coming at last, broken when a short sandy-haired woman, dressed in a sweater set and skirt, comes in and takes my pulse. I’m groggy with medication but she speaks to me nonetheless.
“I’m , Dr Corner, your doctor. You’ve had a bad night I see. Well, perhaps tomorrow we’ll get a chance to talk.”
“Get me out of these things!” I mumble angrily. I can’t sleep like this!”
“”Not yet. You’re not ready. But try your best to sleep now. We’ll re-evaluate things in the morning.”
Then she turns and is gone.
As I get to know her, I will like Dr Corner for her kindness, toughness and honesty, but I will hate her too for opposite reasons and it will be a long time before I know whether the liking or the hating or something else entirely wins out.
The first thing that makes me know ECT is going to be different at St Raphael’s than the to the ECT suite in wheelchairs, the way I’ve known since childhood all hospital patients must travel. We walk there, all of us, down interminable corridors, around several corners, through doors to more of the same. In short by the time we get there I have no idea where we are. I said it was a snap when I had it before, but now I feel like a prisoner going to the hangman, a “dead man walking.” Something about our going there in a group, under our own steam, makes it feel like punishment, like having to cut your own switch, not a medical procedure at all. This sets my nerves on edge. Then, when we finally get to the rooms clearly marked “ECT Suite,” instead of the doctor being ready for us so there’s no time to anticipate or fear what is ahead, we have to wait and wait and wait: we’re told the outpatients have to be “finished up” first. My apprehension grows. I’m used to getting to the ECT rooms and immediately climbing up on the table and getting it over with. Waiting and having time to think about it brings me close to tears.
Finally four in-patients are to be taken. I think the nurse calling us in senses I am too anxious to wait any longer, for she makes sure I’m with the first group. I clamber up on the table, and see Dr Corner looking down at me, smiling. I notice how white her teeth are and the little gap in her shirt across her chest as she bends over me, strapping something over my forehead as Prissy puts a needle into the heplock already in my arm. I feel my arms and legs quickly cuffed down by others in the team, a mask clamps down over my face and I’m told to breathe, breathe in deeply and I breathe and breathe and a chasm in hell opens and the demons reach out and scream as I plummet past into a terrible inky blackness…
I wake up a second later and immediately vomit into a kidney basin hastily held out by a nurse. “Why didn’t you do it?” I cry out, confused. “Why didn’t you do it, why did you made me wait? I can’t go through this again!”
Strangely, Dr Corner has disappeared, and so have Prissy and the nurses that had surrounded me just an instant before. Instead a plump, baby-faced older nurse smiles as she takes away the kidney basin and says, kindly, “You’ve been sleeping soundly for an hour. They did the treatment already and you’re waking up. How about trying to sit up now?” Slowly, I push myself to a sitting position and swing my legs over the edge of the table. No dizziness, no more nausea. I feel okay, except for a slight headache. So I slide off the table and ask where to go. Surely they won’t make me stay a long while this time. The nurse leads me to a wheelchair and asks an aide to take me back to the unit. Ah, a chair at last. At least I’m not expected to walk on my own after that ordeal.
ECT Takes place on Monday, Wednesday and Friday each week and though I vomit many times upon waking up, that is the least of it. What I dread most is the anesthesia, how I plunge from perfect alertness into the dark pit and feel like I wake a second later, sick and confused. I grow more and more afraid until, at the end of a series of 8 sessions, I refuse to go on to a second, even though my symptoms are still severe and Caledonia comes to sit with me one to one more often than not. Dr Corner tries to persuade me, but I am adamant, No more ECT. Then she threatens to have the next series court-ordered and to add insult to injury, she says she will force me to take Zyprexa as well, the drug I so hate. I explode.
“What! You f—ing can’t do that! I’m a free citizen, I’m not a danger to myself or anyone else.”
“In fact, I can do it, and I am going to do it, whether you like it or not. You need more ECT and unfortunately you refuse the only drug that is effective for you. Pam, look, how can you say you’re not a danger to yourself? Look at your forehead! That’s not the mark of I it’s just self-mutilation. Look at where you carved that mark into your hand when we weren’t watching you carefully enough. Isn’t that danger enough?”
“But I’m NOT going to kill myself. I don’t want to die. I just want to be disfigured so no one will want to be around me and they’ll stay safe and uncontaminated.”
Dr Corner’s eyes suddenly glitter and she has to blink a couple of times. “Well, I’m not going to let you continue to do what you want. Period.”
She was standing at the foot of my bed, one foot on a lower rung, casually holding a clipboard. But she moves closer to me, standing to one side, the clipboard clasped business-like across her chest. Gazing intently at me, she shakes her head in what appears to be sadness. I’m not sad, I know what I have to do. I don’t understand why she feels this is so terrible, but I know enough to remain quiet. Finally, she turns and quietly slips out of the room.
This alarms me; it shocks me. I know she means what she says. Dr Corner never lies. Worst of all, Dr O’Hayley, my outpatient psychiatrist, has signed off on it well, agreeing it is the only thing left to do, that already I’ve been in the hospital two months and little has changed, that the situation is desperate. The problem is that to get a court order I have to have a conservator who will agree to it. They appoint my twin sister and they discuss with her whether or not she’ll agree to forcing more ECT on me, in addition to Zyprexa. Despite fearing that I’ll hate her, she too is convinced there are no other options.
So Dr Corner wins and I endure eight more ECT sessions. Finally I’m discharged, much improved, so everyone says, a month later, promising, as a condition of my release, that I’ll continue to take Zyprexa. I do promise, even though my history clearly suggests that I will not. I’m also supposed to return once every two weeks for maintenance ECT treatments and Dr Corner threatens me with a police escort if I don’t comply. But this time I thumb my nose at her. So, she’s going to get both the Hartford and the New Haven police involved? She thinks they are going to bother to arrest me just to drive me down to the hospital for ECT, something they themselves probably consider barbaric? J’en doute fort. I doubt that big time! In fact, after a call to the Legal Rights Project, I learn that any conservatorship was dissolved the moment I was discharged from St Raphaels and that the doctor has no power over me at all now, zilch. So I write Dr Corner a nice apologetic letter, but sorry, doc, no more ECT for me. Ever.
Several months later I pour lighter fluid over my left leg and set it on fire. So much for the restorative powers of electroshock treatments.
Photos from “Reflections on a Psychiatric Seclusion Room”
NOTE: this is a link to the finished collage, sans border of which I have no photo: https://wagblog.wordpress.com/2011/11/13/reflection-on-room-101-in-ward-d/
I now call this Reflections on Room 101 in The Ministry of Love, as a reference to Room 101 in the book “1984” by George Orwell. The place where recalcitrant prisoners faced torture with the things they feared most in the world.
I want to post today some photos from the progress I have made on my large collage of the restraint room (seclusion room) in a psychiatric unit. I must say that it gives me the shakes whenever I work on it, or at least whenever I look at it afterwards, and certainly when I photograph it. But I think that the fear and heart-racing palpitations are slightly diminished compared to this time a month ago. Possibly. That is what I am hoping for at any rate. The process of doing this is my attempt at “exposure therapy” I suppose, because I cannot live with what feels like PTSD any longer. (I know, I know, according to the New Rules, you cannot, by definition, have PTSD unless your life was mortally threatened; unless you experienced a tsunami or earthquake, mass murderer, or Hurricane Katrina, it does not count as “real trauma,” so say the doctors, and they should know, right? After all, they are the ones who defined the illness, and keep redefining it, and who made it up! Well, since they have the initials MD after their names, standing for Missed Diagnoses, I dunno if we can trust them on anything as important as deciding for us what it is that counts as traumatic. It seems to me that WE ought to be the ones telling THEM, no?) Be that as it may, let me change paragraphs and resume the discussion I left off so abruptly above.
Whatever the case, I do suffer with heart-racing fear and sweats and tremors that make it difficult even to take a clear photo of the collage after working on it but whether it is PTSD, I care not. All I care about is 1) communicating the experience, or at least what the rooms look like, and 2) purging myself of the residual fear.
I don’t want to go on any further with that. It truly does cause me great anxiety. And I prefer to work on the collage and on forgiving the specific people who did those things to me. It is likely that they had grown to hate me, forgetting that I was a troubled and profoundly ill person because I was also loud and frustrating and violent…(treated with violence didn’t make me any more docile, I might add). So things only escalated and escalated, when from the start their goal was to have a quiet unit that ran smoothly and had everyone get discharged in a matter of days, no questions asked. They did this by helping no one, by talking to no one, and by questioning no one. All they cared about was making sure that everyone stayed “safe” for as long as they were in their clutches. And that they would say so until they left. BUT I said I was working on forgiving them, and trying to see them as tired human beings, flawed but human. It does me no good to get all riled up again.
so I will leave it here, with the photos of the art. I will add only that I plan to redo the curtains, since as it is the blue competes with the sky. Also there will be a curtain rod, and such…But as you can see, it is still a work in progress!
From Memoir Sequel — A Little Bit to Entice?
You should know that what follows is just a tiny scribble of what I have written, and it might not even make the final cut once I finish writing the book. But I put it here as a little enticement for readers, a tempting snack to “grow the appetite for more” when it comes out. That said, I must warn that in addition to alerting you that the passage below might end up on the cutting floor, if it does not, it still may not start the book. But here I am hemming and hawing and making excuses. Nothing wrong with posting what I have for now, for the nonce, even though I may remove it later on. Comments on subtitle would be greatly appreciated. If you have suggestions for improving it — the subtitle, i mean — so much the better.
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BLACKLIGHT: a memoir of one woman’s fight to recover from schizophrenia
Blacksoup, tarstew, coffeecombs – submerged in the darkness of things I cannot face by light, inky, skeletal, reaching-out things that pinch and grasp and touch, I fight to swim away, even though away means into a blinding headache. I am sucked down again and then again, until through pounding surf, someone calls my name, almost too faint to hear. Desperate, I thrash upward, cracking the surface of the day and open my eyes. It’s well after dawn yet all the lamps in the room burn brightly.
“Pam, wake up. Unlock the door. I’m here,” someone shouts. The door thunders on.
What time is it? What day is it? I must have plunged into sleep the night before without awareness, for all I know is that I break into daylight like a common mole nosing into what feels like leaf litter and detritus, the remains of an old picnic. Popcorn is strewn across my lap and chair in a white rash. Resting on its side halfway off the night table, a cup of coffee, now empty, its contents on the carpet. I hoist myself off the recliner with a groan, trying to shake off my shoulders the gargoyles of nightmare. I sleep in my clothes but I never go barefoot –too liable to be bitten by the inanimate fang of a tack or discarded fork– so it takes me a minute before I can home in on my flip-flops.
“Sorry, sorry, sorry,” Wrenching the deadbolt, I yank the door open. “I didn’t hear you. You’re early today.”
“It’s 8:30. No earlier than usual.” Elissa, her dark hair pulled back from her face, carries her big nursing bag and tablet computer. She wears slim, tight jeans and a ruched tee shirt that make her look thirty-five at most, not the forty-something she rarely admits to. She assesses me quickly before coming in and asking, “How did you sleep? And did you eat last night?”
Almost every morning begins this way, not with the bleep, blurt or blare of an alarm, on which I can mash the snooze button. Not even with the sweet sun-rising tones of my favorites song on iTunes, no, my morning begins with this won’t-take-no-for-an-answer Thor at the door. It’s not Elissa’s fault. Sometimes I leave my door unlocked before I cliff-fall into sleep so she can come in on her own the next morning and gently wake me. But not always, and then what can she do but hammer at the doorway of Oneiros, because nothing else will rouse me.
Elissa has been my primary visiting nurse for more than 10 years and she is the one who checks on me every morning, rain or shine, snow or hailstorm. She can read me by now the way a farmer reads the sky, and just one look or something in the tone of my voice tells her when things are copacetic and when they are not. She has seen me well and she’s seen me precariously ill and she’s the first to recognize when I’m somewhere in-between, headed in the wrong direction. Her main job is to keep track of and make sure I take my medications, but when paranoid, I have yelled at her or been snappy and high strung and irritable. She has never taken it personally. I no doubt have driven her nearly to distraction but she flicks all away as no big deal. I must say though that even though I wouldn’t admit it at the time, she has in more than one instance saved my life.
She keeps returning with a smile nevertheless and now instead of telling her how glad I am to see her, I turn away, mumbling that I had a lousy night. It’s true, but I feel like a lout for saying so. Or at least for saying so first thing.
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Argh, now all I can see are the faults, but I will leave it as is, and not panic or take it down at once. I have learned that there is no terrible tragedy is letting people see rough drafts or the work-in-progress, though it be only that, a rough draft, not the polished version. If nothing else, it proves that I too am a human being who must write and make mistakes before editing and rewriting my copy. In fact, I rewrite a zillion times before I am happy with what I have written. Each poem takes at least 20 rewrites, at a minimum, and most take at least 50 while some over 100. As for prose, well, I cannot even begin to estimate how often I rewrite or revise each passage. but needless to say it is well over 50-100!
Not only is there no shame in revision, I take great pride in how much rewriting and revision I do. It is a point of honor with me that I take this much time with my writing and do not hurry it — ever. People who believe that the first words that come out of their pen or mouth or computer are sacrosanct are likely to not be real writers, only dilettantes who play at writing, but never take it seriously. Who want to write, but who never really do so, except for in the pages of a journal or doggerel between friends and family.
Do not get me wrong, I do not disparage this sort of writing. In a sense ALL writing counts as writing. And all writing is good for a person. But not all writing is publishable or suitable for the public consumption, and that is what I mean by writing done by a “real writer.” Someone for whom writing is what life is all about. Someone for whom life would not be worth while if she could not continue to write. Someone who knows the value of editing and revising and rewriting and who knows that a good editor can a writer’s best friend.
Poems about Schizophrenic Symptoms: Word Salad and Delusions of Grandeur
Poems can express many ideas and experiences. In my first book of poems, We Mad Climb Shaky Ladders, part of CavanKerry Press’ Laurel Books literature of illness series, I tried to express how I felt both during psychosis and afterwards. I also often tried to put myself into the experience of others who experienced symptoms that I might not, but which I could imagine.
One thing I know, having had this illness for so long, is that misinterpretation is rife. I mean things when I do things, just as anyone else does. But people simply make assumptions about my behavior and forget that they might need to ask why I do what I do. I have often asked others why they did whatever strange or seemingly outrageous thing they did, and lo and behold there has always been an understandable rationale behind it. For instance, when I stripped naked in that freezing seclusion room, I was neither “acting out” nor totally around the bend, no, my reasoning was that if I were naked they would have to give me something to cover myself with, i.e. a blanket, which is what I had been begging for all along. But they never asked me why I had taken off my clothing — a flimsy tee shirt and lightweight jeans. They just assumed — whatever they assumed. Ditto for almost every other interaction I had with them, and the same almost uniformly went for other people when they behaved in a way that was somehow contrary to expectations. The meaning of their actions was reasonable, given the context.
I tell you this because in my poem, Word Salad, even though it appears to be, well, “word salady” and incomprehensible, in truth there is “method” to it, and in fact if you read it with a mind towards understanding the links, you would appreciate them. But you might have to “surrender” to getting it, and let it in without trying to rationally, intellectually understand. Only afterwards could you perhaps try to figure out what precisely is being done and said in the poem. One clue you might need, if you have not been subjected to this directly is that often, at least in the past, “patients” of a certain kind were asked to interpret proverbs. “Can you tell me what, ‘A rolling stone gathers no moss’ means?” or “What does ‘People in glass houses shouldn’t throw stones’ mean?”
As for Grandiose, the same thing holds. Read it aloud and try to get the sense of it, how it reads. Then you may in fact understand what is going on “in one blow,” so to speak. It is full of double entendres, on purpose. Remember that “live” can be pronounced in two ways. Both of these hold.
WORD SALAD
“Word salad,” a term used for the completely disjointed, incomprehensible language sometimes seen in schizophrenia
Unpinned, words scatter, moths in the night. The sense of things loses hold, demurs. Everything means. Numbers soldier with colors and directions, four by four in a pinwheel: this is the secret wisdom. I inscribe it on sacred sheets of paper. The Oxford Dictionary holds not a candle. The self reduced to a cipher, a scribble, the Eye is all, with a Freemason’s lash, and 26 runic hieroglyphs to share how a stitch in time saved the cat and if a messy rock gathers no stones, clams must surely be lifted higher by the same rising boats. Why, why not throw glass tomes at grass huts? It is a question of propriety: grass is too dignified to lie down before gloss. Whirligig! How to pull the center back into the world? It would take all the OED to recapture the moths, all Harcourt’s English Grammar to pin them again. GRANDIOSE He says: I was always more important than you though with your cutting me down to size quarrel about just who I thought I was. I thought I was with my long dark hair and beard and rough working clothes John the Baptist, prophet of God wild man of the wilderness and would have to preach the word of a savior I didn’t quite believe in. I mentioned my conviction to a friend who told me to make friends with a mirror, discover which John I really re-incarnated. Lo, I looked and saw the more famous than Jesus John staring with his small important eyes behind his too small eye-glasses at me staring into the mirror at myself, yes, I wrote the songs you grew up on: Yesterday, Give Peace A Chance, Eleanor Rigby— yes, I was the one you swooned over and screamed for, yet now you only shriek at me, taking me down from a peg on the wall. Why do you yell, Get lost, baby? Imagine all the people who would rejoice to see me live once more.
Psychiatry and Authority: Restraints Update
I want to update my “On Psychiatry and Authority” post, especially about what they did to me at “MIddlesex Hospital, which I can now do with more accurate data. I gleaned a lot of the following directly from my records, meaning both the nursing and progress notes and the “event” notes, which should have been written after each and every incident in which they felt obliged to use measures against me involving involuntary seclusion or restraints, including such things as: physical/bodily/painful holds, physical/bodily/forced escorts, physically preventing me from leaving a “time-out” room, i.e. a seclusion room, as well as a locked door seclusion or the dreaded four-point restraints . I have also used my own journal writings here as counterpoint, some entries of which were penned as soon after these things happened as possible — that is, when I could obtain a writing implement.
The first time I wrote about the particular incident I focus on here, I did not understand why I was naked. Having read my entire medical record from the stay, I now understand more about what happened, so I will start this account where it really began, somewhat earlier in the day. Also, and this is important, while they perpetrated a criminal act on me in this incident, there were others later ones as well. During those, I am described in words that make me sound as if I have gone something near berserk…though not in those words of course. Now, there is no context given, nothing is said, not a word, of what the staff is doing TO me or with me at the time that I am going so wild, but nevertheless, the chart describes me as biting and kicking and screaming and peeing on the floor and smearing urine all over the walls…and then there are repeated use of restraints and locked seclusion where neither were “necessary” and were always destructive and traumatizing. Well, unfortunately I have no journal entries after that first time. Why? Perhaps because by then they had drugged me up on Keppra (having decided I could not take the 2 separate ones I came in on though they worked fine and without side effects ) an anti-seizure med that made me so dizzy I literally could not walk, and my vision so blurry that I could not write even if they had not prohibited the use of all writing equipment. So I can recount here only the most egregious incident, the one that I believe triggered for all the others that followed, the one after which “all bets were off” as to any future “behavior” on my part, and from which I emerged so traumatized that I didn’t give a hoot what they did to me after that…
Before I get to it though, I want to briefly recap where I am in my struggle to recover from the trauma that this stay at Middlesex Hospital occasioned, which only increased the trauma already inflicted 6 months before at Manchester hospital. Up until the night before last, as you know, my state of terrible upset had been growing worse and worse, so that I’d gotten to the point where I could scarcely think about my 6 week stay at Middlesex without becoming nearly hysterical with trembling and anger and anxiety and terror all mixed up together. I felt as if death impended, my heart pounding wildly, fear screeching like a car swerving at high speed until it nearly hit a bridge abutment. Every night, every day it comes back even now (new edits 3/2012) as if happening again. Then one night, I wrote the blog entry about Trauma and Acceptance, and I began to try to think about things differently. I realized that I could parcel out thinking about Middlesex little by little so the trauma of it didn’t have to eat me alive. I realized that I might be able to save my sanity, and spare my life from total destruction at the same time, if I decided to accept what I could not change, the first step of the Serenity Prayer.
Wonder of wonders, after two days of not letting the trauma appear on my radar screen, except insofar as I gave a talk about it for the Farmington, CT, NAMI book club last night, which included reading the Acceptance blog entry as its conclusion, I have made an astonishing discovery. Up till now I had had almost complete amnesia for the Middlesex hospitalization. However, it seems that as I remain or try to remain calmer, certain episodes are coming back to me. Not fresh, not by themselves, no, but when I read in my journal or even in the records something that I did not recall on my own nor even believe was true it feels, well, possibly real, and I can just begin to “get” a sense that indeed it feels familiar, that perhaps I did do that, did say that, that it did happen, even if I would not have remembered it without the journal jogging my memory. I am wary of induced false memories, but in this case since I have records of the bare bones of what did in fact happen, I have to try to trust that at least some of what I am retrieving is not pure confabulation woven from only my imagination.
I cannot bring my mind any further down that memory path yet. But I suspect now that I formed some memories after all, that they are simply buried for some reason, and that perhaps the trauma and fear have kept them from me. Now that I can relax a bit and not feel so angry and terrorized by my amnesia and by the one clear memory I have, perhaps some, if not all, will slowly return. Since I prize my memories — they are all I have and without them I have had no life, — I want them back, as many as possible bad as well as good.
Now let me continue on to the account of Middlesex hospital in late April, 2010 and the first time they put me in 4-point restraints.
During the MD visit the morning before, Dr N wrote: “Patient later ..(?) ..to me that she didn’t trust anyone, that no one wants to help her and she is being punished by staff. I repeatedly said that she is not being punished and she is projecting….Patient escalating tension with staff. Rigid. Wants to die. Wants to sign 3-day paper to leave.” (It is not clear what he means by “later” — did he write this after the episode of restraints, when I did in fact tell him that they punished me? It seems likely. IN which case he did not listen to anything I said…)
RN note 1:30 PM: “Alteration in thought: Patient continues on constant observation. Continues negative, irritable, testing limits. Refused initially to shower, then changed mind and agreed to, then wanted to walk out of shower into dayroom naked. Agreed to dress after informed security called to unit…”
About these notes: one, what was I projecting in thinking they wanted to punish me? What? And it is typical that Dr N blamed me for “escalating tension” with staff. I wonder if he ever saw how they worked, saw in action the mechanism by which they’d cause an escalation. 2) Most likely, in this case, I was threatened that if I did not shower I would not get off 1:1, so I “changed my mind.” And it seems to me that if someone “wanted” to get out of shower and walk into dayroom naked, it is a matter that the nurses could handle and ought to. I weighed all of maybe 98 pounds then. And if they had closed the door and made me dress, they could have. Why call security unless they wanted to threaten me, terrify me? That was neither compassionate nor caring. Methinks it was, aha, punishment.)
Moving right along…
All the details that follow are “accurate” insofar as they are derived from official documents or my journal. Accurate in that sense. But remember that in the records, NO context is ever given, the behavior of the staff is rarely described, or only in the briefest and most self-serving ways. NO context is even given to MY behavior.
The nurse who wrote up the night’s notes says that I was angry the entire evening and demanded continuously that she call the on-call doc to discontinue my 1:1 status. For some reason she writes that I was “unable to follow directions” when she tried to assess me for, I presume, safety, perhaps so I can get off 1:1. I don’t know what she is talking about here, but it is typical that the nurses cared only about a patient’s taking orders and following directions.
Anyhow, at around 7:30, she wrote that I “walked into the dayroom” and according to the RN notes, without any provocation (which is highly doubtful) began shoving and turning over chairs and then picked up the patient trash can and put it over my head. Although at that point the staff told me to “walk with them to the “time out room” I refused and “went to bed instead.” (That was written in the chart: I WENT TO BED INSTEAD.) Now, you would think that this would be fine, after all, would not they want me to go to bed and calm down? But no, I had not “followed directions” and so of course “security was called and patient required security to carry her to time-out room as she refused to move or walk.” Remember that this “time-out room” is exactly the same thing as the “seclusion room” — it is the same room, with the same “withouts” — without heat, without windows, without anyone to talk to, without blankets, without a toilet, without anything to make one comfortable…just a thin mat on the linoleum floor, unless they have taken it out. So they barged into my room where I had gone to calm myself down, and picked me up bodily and carried me to the seclusion room. That means by definition that they physically restrained me and physically, forcibly escorted me to the seclusion room where they prevented me from leaving, all of which are NOT permitted except in the case of “severe and imminent danger to self or others”…(so an event note should have been written up and a physician’s orders should have been gotten). There I took their Ativan and was told that I had to stay in the room for 30 minutes. Why not in my own room for 30 minutes? Because time spent in the time-out room is a punishment. Parents make children stay in a time-out room (usually their bedrooms!) when they don’t obey. Why? Because that’s their punishment. But staff doesn’t punish. No, they don’t punish…
Now this is how I remembered it the next morning in my journal: “I had been told to go to the time-out room, which I did voluntarily…” (apparently I did not remember that I had been physically carried there, but there is some confusion in the records too, because I went and then left and then was carried back…). “But it was cold and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back into that cold and sterile room, 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 it this way: “Patient refused to stay in time-out room, 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 agree that I stripped off all my clothing. But the official records state only that fact, and that I “was changed into hospital garb” but in my journal I write something entirely different and rather revealing: Left alone in that cold and sterile room, I decide “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 got up and tried to push through the woman barring the unlocked door. She called for reinforcements and they came en masse. (Note: I spelled this “unmasse” — a dyslexic spelling of the first order. This is a symptom of my acute neuro-Lyme disease, since I was always a first-rate speller and would never have had difficulty with “en masse” had I not been in the middle of a flare up… as they knew full well).
“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. The security guard seemed taken aback. All these personnel hours wasted when all I wanted was one 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.”
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 and got me onto the hard floor, my cheek on the dirty linoleum and breathing dust. At first I struggled but then I realized that the less I did so, the less they applied pressure (there must have been six people or more holding me face down on the floor, one of them practically sitting on me…).
Finally I stopped resisting and they let me sit up, finally giving me a blanket or sheet to cover myself with. The room cleared as everyone left except for one nurse, who was on one to one with me. She apparently was now allowed to talk with me and we conversed calmly. The door to the seclusion room was also now open.
However, there was some soft talking outside the door and I heard someone walking down the hall and opening a cabinet. I had a bad feeling about it and asked the 1:1 nurse what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.” This gave me a very bad feeling, and I suddenly 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 calm. You know that.” I said that again loudly, loud enough so whoever was down the hall could hear me. I began to tremble, but forced myself to remain as composed as I could. Another staff member then came into the room and asked me to come down the hall. Did I need an escort or could I do so myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm and it is illegal.” Nevertheless, I followed her to the empty room — I felt like “dead man walking” when I saw indeed that they had fastened restraints on the bed. The room was filled with staff members and security 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 said anything except to reiterate that they would assist me if I did not lie down on the bed myself. I was so terrified that they would assault me and hurt me, terrified of the fear itself, that I simply got it over with, lay down on the bed, naked, and let them do what they wanted to do, gritting my teeth when they removed the blanket that was covering me. Well, here is what I did not remember, the account after that from my journal:
“Well, you know that despite my complete lack of resistance, they shackled me 4 points (badly as their restraints did not actually fit the bed — restraints are supposed to keep the arms at your sides not below the level of the bed, and your legs are not supposed to be spread-eagled! I protested this fact but not so loud as to disturb others [when they released me] my back hurt so badly I could barely walk and once more my scapula muscles felt as if they had been separated.”
“I plan to sue you for doing this to me.” I said calmly to all as I left the room. Nobody reacted…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.”
Nursing notes were rather different, and I think were written after the fact, and hastily, perhaps not exactly ‘fact-checked” for accuracy after all. [Did a family practice doctor really see me? I do not believe so…why else would I not tell anyone about the pain, which she reports as non-existent.) But here is what she writes about the “scuffle” in the seclusion room:
“Patient was changed into hospital garb which she also stripped off. she demanded a blanket which was not given due to concerns about her tying it around her neck. [Note that I was ALWAYS under one to one surveillance!] She was encouraged to put the johnny back on and she refused. After staff left the seclusion room, patient placed mattress over herself where no staff including her 1:1 could visualize her. When staff entered room and removed mattress, patient again darted toward staff and attempted to flee. Pushed at staff, then kicked at staff, and attempted to trip staff wrapping her legs around RN’s leg. During the scuffle patient ripped bandage off her leg and yelled, “I have AIDS. I didn’t tell anyone that before!” She refused to remain in locked seclusion without attempting to harm others. Patient covered with sheet and walked to empty patient room where 4 point restraints were applied. Patient continued agitated initially then was quiet lying still.” [Patient can come out of restraints when able to refrain from aggressive behavior towards staff and property and can follow directions.]
Now you get the picture. I was put into restraints as punishment, but as an excuse for it, they made up a reason, which is is how I can get out of them: stop being aggressive towards, 1) staff ( remember who dragged me into seclusion room? I had gone to my room and they dragged me out of it just to teach me a lesson in the punishment room! 2) property – I was a danger to property… I do not think somehow that danger to property is one of the reasons a person can be put in restraints in this state or this country. And the danger was that I had put a wastebasket over my head! 3) following directions, well I won’t even go there. Just look at those “justifications” for keeping me in restraints and you will see just why I know they “had it in for me” that particular episode, but in fact were trying to get me most of the time I was there.
Be that as it may, I have contacted the Commissioner of Mental Health, and hope to contact the Office of Protection and Advocacy, which oversees the private hospitals in the state as opposed to the state hospitals, though I do not see why the commissioner is not involved in any hospital that takes state money, as all the private ones do…And seeing as I am a Medicaid patient when hospitalized, I would be a state patient were it not for the private hospitals being forced to take such patients in this economy, whereas years ago they could pick and choose, and did.
Finally, the MD’s “event note” observes upon exam in the restraint room that the patient is “generally agitated, very verbal, lying in bed with the help of staff and security to calm her down…” I beg your pardon? Calm her down?! I was being restrained, one, and two, I was being tied to the bed with my arms over the edges of the bed, below the level of the mattress, and my legs were spread-eagled –I was naked, remember? and all of them knew it.
So that is all I have to write tonight. I am appalled. What sort of people could do that to anyone? Who were they once, and how did they become so jaded and cruel? Surely, as nurses, they must have once been idealistic and good-hearted and compassionate. Most people who go into nursing are and I doubt that many go into it for the money or for any other reason than that they care about people. I simply have never met any young nurse who was not idealistic and caring, but I suppose there might be one or two. So what happened to this group? Could it be their own “society” is not supportive, is backbiting and so lacking in cohesiveness that they take out their own frustrations and lack of positive feedback on those patients who least please them?
I dunno, I have been told that this mechanism is sometimes at work on units where staff behavior is out of control in such a way. But what made them in fact so much into control and coercion at all? Why were they not themselves empowered by compassion and kindness, which would have fed them better as it fed the patients better as well? How did it come about that they learned the wrong lessons? I don’t know, and probably will never know. But I did catch a sense of these strengths in one or two of the nurses, just buried in fatigue or long ago burned out…
Too many were too personally invested in the patients liking them or in behaving for them in such a way that made their jobs easy! That was stupid and nonsensical. Why should the patients have to be or do anything for the nurses? The patients cannot control their illnesses and staff forgot that in their own need to be in control and to have their own need met by their patients. I think that is what it comes down to: at Middlesex, the staff’s needs were not being met by each other, or by the supervisors and colleagues, so they looked outward, and who did they expect to meet their needs but their patients, who could not, and could never do so. So they tried to make them, force them to. Or at least to toe the line and make each day quiet and easy to get through. What a farce. What a lousy place to be sick in, what a sick place to try to get well in…
That’s enough for tonight.
WAGblog: Dum Spiro Spero 