This is a video that replaces my old post of instructions and photos. Hope it meets with approval from those searching for it…
Well, how did it go yesterday? All in all, I would say it was a very successful meeting. Certainly it went better than I expected, and better than the disastrous meeting a year ago at Middlesex Hospital with Dr Grillo et al. I fear I irritated Dr Mucha a bit at least at first. Why? Because I think he felt defensive and tried to tell me how much he did on my behalf and my mobile facial features (I don’t hide my feelings behind a good psychiatrist poker face) let him know at once that I didn’t believe him. Why should I? One, it was completely self-serving for him to tell me — as if he had been some sort of knight in shining armor behind the scenes — how much good he had done for me, when he let them restrain me day after day for many many hours at a time, and keep me in what he himself acknowledged was on-going seclusion for the majority of the hospital stay. How dare he tell me how much he did for me, and then when I said they “tortured me” actually scoff, “Restraints aren’t torture!”
Ask my brother, Phil, an extremely humane psychiatrist who would disagree, and would rather die than be restrained, but I went one better. I quoted Juan Mendez the Special Rapporteur to the Human Rights Council at the UN who just this past March spoke/wrote specifically about psychiatric patients and how the use of solitary confinement of any duration and any use of restraints, forced medication and forced ECT is torture. He didn’t say tantamount to torture he said that are torture, period. And I would remind Dr Mucha and Mrs. Blair that until you have experienced these things — and I defy you to try any of these modes of your so-called treatment– you have no way of knowing. All you have to do is look at the expression on the face of the woman in the picture I did yesterday.
From the way I was treated, under Dr Mucha’s supposedly magnanimous supervision, at the IOL (depicted in that drawing) anyone could tell that the people “caring for me” did not consider that I was truly human or “felt” their torture in the same way they would have. Because if they had believed that, they never would have done what they did to me, unless they really did deliberately, maliciously want to torture me. I don’t know which it is. Dr Mucha and Mrs Blair say the Donnelly 2 South unit staff are good people who wanted to help me….So which is it? That they didn’t consider me a real person, just a diagnosis and not really human, so they thought I didn’t feel the torture (this despite my exquisitely lucid PAD that spells everything out in detail) they inflicted, or they were actually malevolent and wanted me to suffer? I tremble to have to choose between the two!
Either way, the torture was inflicted and despite numerous calls to Carmen Diaz, the patient advocate, (another name for the Hospital employee who works FOR the hospital not the patient, really) no one, not a soul, came to help me. I called outside sources too, but except for my advocate at the dept of Protection and Advocacy, who is not a lawyer and has little power besides that of complaint, there is not an agency or organization in this entire state of CT that can or would help me. Not a legal aid group or a lawyer besides the court appointed one to fight commitment that would even come in and talk to me about what was happening. I was ALL ALONE, yet Dr Mucha’s knickers got in a twist because I didn’t praise and thank him for all his work behind the scenes on my behalf.
Well, I am sorry, but 1) Dr Mucha is the Director of the IOL and he is IN CHARGE. He did not need to work behind the scenes. He could have spoken to Dr Taylor about her treatment of me at ANY time. If he thought she was not treating me well or using restraints in an unnecessary or wrong-headed way, he ought to have spoken out at once, openly. Period. 2) I needed someone on my side OPENLY. I needed someone to come to me and tell me that they were going to stop this nonsense and get me some real help that no one was going to restrain me again. That they knew my advance directive was meaningful and that things had GONE TOO FAR.
None of that happened. None of that happened. And while plenty apparently did behind my back, I am not responsible for what I was not told and did not know. Though I do appreciate it now that I do know. For instance that Bev, the voodoo princess, who I was terrified of, not because of her voodoo, but because she was dangerous to me as a staff member, having taken an intense dislike to me, indeed such a hatred of me that she was conspiring to kill me…she was removed from D2S unbeknownst to me for as long as I was there. Simply because I had expressed such intense fear of her. That was something I did not know about, but I am very grateful they heard me and did something for me in that regard. Took my fear seriously rather than tortured me with her presence. On the other hand, if only, if ONLY they had told me that she would not be back for the duration, I would have slept better! Why not tell me? For nights I slept fearfully, since I had no way of knowing she would not be on the night shift!
I wish Dr Mucha et al would look into the Open Dialogue method of dealing with psychosis. It will never be implemented in full in this country, and certainly not in hospitals. It is not a hospital-based method in any event. In fact, it is anti hospital and empties hospitals rather quickly. But some parts of it would be eye-opening, such as always including the patient in treatment planning, how that helps bring clarity to even the most disturbed person. How it involves their being NO secrets, nothing hidden, not even disagreements between treaters as to how to proceed. How wonderful it would have been for me to have actually heard Dr Mucha in conference with Dr Amy Taylor et al discussing the use of restraints or seclusion…Do you really think anything would have continued to happen, or that things would have proceeded apace if I had been included in those case conferences about me? I highly doubt it! Oh, if only I had been….I could have told them so much, but of course they didn’t even think to include me when talking about me! How stupid of them, how completely stupid. But I wasn’t a person, just an animal, just a diagnosis.
Anyhow, at the end of our meeting, which did go well after we got off the torture topic, Dr Mucha asked me if there was anything I wanted to end on. I thought a minute and said, “Well, you know, I want to go back to the subject of restraints and seclusion. You continue to use them because you won’t stop using them. You say it is a slow process, that it takes time. But it isn’t a slow process. You cannot stop using them as long as you allow their use at all. All it takes to stop using restraints and seclusion is to STOP USING THEM. Period. Once you don’t have the notion that, Oh, well, we can always use restraints on that unruly patient, so it’s okay, we don’t have to plan in advance about how to deal with her or him if things get out of hand…once you can’t resort to restraints at all, then you must think imaginatively in advance about how to deal with patients and you will find a way. You always do. Necessity is the mother of invention.”
So that is my challenge to the Institute of Living. Stop dillydallying around and pretending that you are reducing the use of restraints and seclusion. Don’t tell me that you are only using them in the geriatric population to reduce falls, because that is not true and that is not really the sort of thing that I am talking about and you know it. You don’t use seclusion and restraint to reduce falls for “an hour” anyway…THree times a week is not a reduction. Once a year is a reduction! But I want you to NEVER use restraints or seclusion again. I want you to understand that to restrain a patient or to use a show of force is to torture someone. Get this one thing straight, to deliberately frighten a patient with a “show of force” is an act of terrorism and has no place in a hospital. (In a prison, maybe, though I would argue against treating any human being like that even in prisons…) And when you torture someone esp a patient who is already suffering and frightened, you make her or him worse, sicker and likely to be MORE violent and less predictable and traumatized, with the subsequent behavior that is known to result after trauma. NOTHING good comes from treating a patient with violence.
I don’t know if the IOL will listen to me, a nobody, a nothing worth less than the paper I am printed on. Not worth a red cent or a paper nickel. No lawyer gives a sh_ t about me, I am not worth their time or effort because I am not worth a stinking dollar. So why would the venerable IOL pay attention to anything I have to say? (I am not stupid for all that, but genius IQs are a dime a dozen, alas… and Mucha and Blair too are no slouches, even if they persist in the delusion that to treat patients with violence is acceptable, and not torture, really.)
LISTEN to ME, LISTEN TO ME! I know what I am talking about. if you don’t you will continue to cause more harm than good. If you do, you will break new ground and start a revolution that cannot but do good. That’s all I have to say.
So that is all I have to post today as I have too many errands to do before my meeting at the Institute of Living. Wish me luck everyone! I don’t expect much from them, I must say. Not much at all, after all, no one is going to acknowledge any wrong doing, much less apologize or even want to improve the situation. Not as at Natchaug where at least they gave lipservice, though it turned out to be lip service ONLY…to wanting to make Natchaug a better place. (Yeah, it turns out they — THe MFs at Natchaug Hospital who said they wanted me to speak — were just stringing me along, never did have any intentions of having me back to speak to the Medical staff, just mollifying and mollycoddling me as I sort of thought they were…Dr Deborah Weidner, the Natchaug Hospital CMO, is a politician as much as a psychiatrist and has to be, right? NO…but that is another subject altogether. I won’t be going back to Natchaug ever again either , not as a patient, as was understood. They don’t have a doctor who will see me, so why would I care about helping them improve? I did care. I do care about all their other patients and I care about their Mental Health Workers, who were the one group that really did do their jobs…and most of the nurses too…But the problem is the Admin of Natchaug doesn’t care, and the senior nursing staff is burned out and problematic…But I am not going to go there. Because THEY DON’T CARE that I care!)
Anyhow, as I said, I have errands to do and I guess I should maybe wash before I go to the IOL, seeing as how I haven’t done so since my trip to NC…It might be a good idea, though a real drag. I hate it…I hate the very idea of getting under the running water and getting wet is such a hassle. But gotta keep up the appearance for today! After that, who gives a damn…
Okay, so thats it for now. I’m outta here. Thanks for all the FB support, guys. I will let you know how it goes.
Dear Dr Mucha and Ms Blair,
Forgive me if I must read this instead of simply speaking extemporaneously, but while I may seem collected to you, inside I’m shaking. Indeed, every time I recall what I recall, or reread the nursing notes about what was done to me this past winter here at the IOL, I start crying. I need to stay in control in order to retain some credibility and so I have written this out in advance in order to make sure that happen
Thank you for meeting with me today. Ever since I was discharged from the IOL in February, I have felt the need to come back here to speak to someone. Yet because of trauma-induced amnesia, it is only now that I have acquired my records and learned the details of what happened that I’m finally able to do so. But at the same time, I wonder why I bother, since it is not as if I expect you to do anything or say anything that will make a difference. You won’t. You can’t. No one ever does, not even when faced with the reality of the most egregious abuses.
Please understand that I know I was a difficult patient. I was loud and upset and hard for some staff to deal with. That is precisely why my Psychiatric Advance Directive was written out the way it was, and why I made my medical and psychiatric history online so available. When ill, I am frightened and paranoid, which makes me easily roused to irritability and hostility. I know this, from a distance as it were. But knowing this now does not mean i was in control of my behavior. I am by nature neither temperamental nor prone to temper eruptions or throwing things. In addition, I am extremely modest, hardly one to disrobe or urinate in public. My friends and family have at times variously labeled me “stoic” and “peacemaker,” which should tell you a lot. But that I did all these things on Donnelly 2 South both horrifies me and concerns me because these behaviors point to something going on distinct from psychosis: they point to abuse and trauma.
Let me make it very clear that I have behaved in such outrageous ways before, yes, but only in response to extreme circumstances – as when i was subjected over and over to restraints and seclusion in a horrific and sadistic fashion at Manchester and Middlesex hospitals in 2009 and 2010. It is too bad that when Amy Taylor took it upon herself to violate my HIPPAA privacy rights and investigate my previous admissions, without asking my permission (which I never would have granted) she failed to make the connection between their abuse, and my subsequent behaviors there…It turns out all she drew as a conclusion was that if those hospitals could use restraints and seclusion ad libitum, well then, so could she. It didn’t seem to matter to her that in 2009 and 2010 those measures not only didn’t work, they made things worse when Dr Taylor followed their examples, the same results ensued, just as my PAD predicted.
I was admitted to Donnelly 2 South, and I came in with the very detailed Psychiatric Advanced Directiveas as I said. I made it very clear that my online electronic medical record was available. It included documents such as my narcolepsy diagnostic consult and special documentation proving my need for a higher than usual dosage of Ritalin, written by my former sleep specialist who was also my psychiatrist from 2000-2009. Included as well was a letter she wrote to my present psychiatrist, Dr Angela Cappiello, explicitly stating her conviction that I do not have a personality disorder, borderline or otherwise, and never did.
According to Dr Sanjay Banerjee he read every page of documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr Cappiello, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, Philip Spiro, MD, himself a psychiatrist brought the same matter to the fore again when in discussion with Laurie Denenberg, but her response was much the same:
“Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such an document. “ If this was so, then how did it come to pass that Amy Taylor wrote on my discharge summary that I have a “long history of Borderline personality disorder” and herself diagnosed “Personality disorder NOS with borderline traits”? I was being treated for four weeks for an active psychotic disorder. She would have no way of knowing whether or not I had any personality disorder, given the axis I diagnosis and you know it. She did too.
Dr Mucha and Ms Blair, you were not there on the unit or in the quiet room with me, so were you even aware of what happened half the time? Did you know for example, that on Februrary 6, I walked away from the quiet room, strolled down the hall, looked out the window and slowly retraced my steps back to the quiet room. But when I arrived I I was confronted by a cohort of staff who proceeded to 4-point me, even though I was quiet and put up no resistance? Not wanting to give them any reason or justification, I passively lay down on the bed and placed my own limbs out for the restraint cuffs, saying, (I quote my journal entry made later that evening): “For shame. You ought to be ashamed of yourselves. I am not and never was a danger to myself or others.” Their response was “ You refuse to follow directions so we do not know what you will do. This is not punishment, Pamela, this is what your behavior brings on every time.”
Were you aware that they always restrained me, spread-eagled, so tightly I couldn
‘t move a muscle? That they never permitted bathroom breaks or even let my hands free to eat? That I would fall asleep rapidly after three injections –whether calm or not, it was a routine punishment needle in the buttocks: Haldol, Ativan and Benadryl —and they would invent reasons to maintain me in restraints even after asleep for hours? Or when I woke, groggy and hardly dangerous to anyone, they would grill me with questions that I could not answer, and they would use my inability to respond as reason not to release me?
Later in the evening on Jan 6th, for the second time that day, they restrained me, for throwing half a graham cracker at the wall. Then, as usual, they left me like that for six hours, even after I fell asleep. In point of fact, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. Of course not, because I hadn’t done anything to earn my way into them in the first place. They always refused to release me, ALWAYS, until I literally cried, “Uncle” when they told me to.
As to those vaunted
“shows of force “ what did you expect? Presented with a cohort of threatening staff personnel I saw one thing: an impending assault. I know they anticipated my panic; it said as much in my chart. Isn’t that the point of a planned “show of Force” – to induce fear and panic? Why else do it? So why should it be any surprise, when I defended myself as they grabbed me? When they stuffed me into a body bag and were trying to tighten the straps, surely you can understand why anyone would bite the hand of an attacker whose digits came near. It was a matter of life and death!
But none of it should have happened. My PAD explained in exquisite detail exactly what to do and what I respond to better than fear tactics and force. in fact, It is beyond me, knowing that one of the admission diagnoses I came in with was PTSD, how you Dr Mucha, could possibly approve in advance, the emergency abrogation of my PAD and a “just in case they are needed” use of restraints and seclusion. Why not counsel the person asking for this advance “right to restrain” to do all in his power NOT to restrain me and to work with the PAD instead?
Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:
“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.
“Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors that staff members are attempting to control or eliminate.
I have been traumatized, and not just by hospitals. I was date-raped three times in my twenties and experienced traumatic domestic abuse by a long-term roommate. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without serious consequences: regression and serious worsening of symptoms. Unfortunately, as soon as the staff saw fit to use physical methods of coercion and control on me, read punishment, from the first time a staff member grabbed me, all bets were off as to how I would behave. I certainly ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate? Violence begets violence….
I tried to get help even when on the unit, at least I tried when I was free to make calls or leave my seclusion, err, forced-voluntary time-out two-week-long stay in the quiet room last winter. I made I do not know how many, but many, calls to the patient advocate office, but the sole time anyone made contact was when Carmen Diaz came to hand me some paperwork – I believe I was actually in 4 point restraints at the time — papers I could not read about the forced medication hearing. I needed her advocacy, but she never responded to my panicked calls in any way that was helpful to me. I wanted her help, but she never came by to ask me what I needed. She was less than useful, the fact that I had to go through her, and her refusal to respond contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr Banerjee tried to force me into ECT.
And where did the ECT discussion come from? My PAD states in no uncertain terms that I would refuse ECT under any and every circumstance. My brother would be my conservator if Banerjee had sought to go down that road, and he would never have made any decision to counter my wishes on that subject. If Banerjee really read my PAD, he would have known that, and you too. Because he implicated you, you know. He told me that “Dr Mucha and I have made the decision to force me to have ECT.” Oh, I know, the chart talks about having “discussed the possibility of ECT with me” but that is not how it went down. I recorded the conversation in my journal directly after it happened and Dr Banerjee presented it as a discussion that you and he had, and a decision that you and he had come to, not one that I was privy to. And he presented it as one that I had no choice in.
Nevertheless, let me ask you this: regarding ECT and my so-called depression, were you fully cognizant that Banerjee had stopped my 75mg of the antidepressant Zoloft during the first or second week I was there? “Do you really need that?” he had asked, “You don’t seem depressed to me.” Obedient, and in any event glad to get off any medication at any time, I shook my head, assenting to the change. I remembered having trouble getting down even to 50mg quickly at Natchaug the summer before, I dared not mention this and frankly believed it had been a fluke, the opposite of the placebo effect in a sense…So I went along with Banerjee’s decision to summarily cut the Zoloft and hoped for the best. At least, I thought, if things go haywire, it will not be due to self-fulfilling prophecy, a doctor looking for symptoms he expects to find and conveniently finding them. And at least he will know the reason.
A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal of Lamictal, a drug I had not taken in months. Now he was applying to force me to take ECT, something I was terrified of, and to have calculated brain damage.
It was this threat, and the brutality with which the decision was handed down, that started the downhill course of my IOL stay.
The very next day, all hell broke loose. When I entered the conference room, I pushed some important notes I needed Dr B and Laurie to read across the table in front of them. They refused, claiming that I threw the papers at them. Instead, Dr B proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.” I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.
It could have ended there. I could have been left alone, to cool down and calm myself. But no, Dr Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, ie physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was NOT hurting anyone or even threatening anyone or myself with harm. ALL that I had done, in terms of physical threats, was to throw a lightweight chair at the wall. And that, it was clear to everyone, was intended not as a threat to anyone. Furthermore, it was done and over with. I had left that area and gone to my room. I had then come back and now sat on the chair by the phone, speaking to my interlocutor on the other end. There was no need to pick a fight or encourage a struggle. A wait-and-see policy could have successfully guided the situation to a better resolution not only for the situation at hand but for the entire hospital stay. As the poem by Dylan Thomas goes: “After the first death, there is other.” Once they decided to use restraints, there was no going back. The first time broke everything, So they used them again, and again and more and more freely and without justification but for convenience and punishment.
Back to Feb 6, after sleeping for six hours, I was taken out of restraints just in time for a visit from Dr Cappiello. Observed by my 1:1 staff member, I could barely whisper and dared not tell my outside psychiatrist the full extent of the abuse that had been happening. Nevertheless, she took one look at Dr Taylor’s behavioral treatment plan posted on my wall, and told me that it would be impossible for anyone, even someone who was well, to follow it to the T. She was so worried about me, and about my ability to complete the requirements, even for a “mere 24 hours,” that she intervened. The next day was the single day that Dr Taylor planned to be out of town, so Dr Cappiello asked Dr Mehendru to evaluate me for discharge, telling her that she feared a power struggle had been set up that I could never win.
When Dr Mehendru came to see me, at first I was angry, as the chart indicates, thinking she was just another Taylor flunky, preparing to use more restraints and seclusion, But when she asked if I would like to go home, I took one look at her, saw sincerity in her eyes, and burst into a smile, ready to say yes to anything. Miraculously “cured,” I left the IOL that very same day, less than 12 hours after being released from 4-point restraints and not 4 hours out of seclusion.
However, I was not well. And within two weeks time, I was back in the hospital, this time to be admitted to Yale New Haven Psychiatric Hospital, via their emergency room. Over the next 3 weeks I experienced an entirely different kind of care. At Yale I did not find a staff ready to fight or try to seclude or restrain me. This staff did not need their day to be hassle-free with drugged and cowed patients. Instead, they were trained to remain tolerant, calm and compassionate in the face of sometimes very trying circumstances. It worked. Even when I screamed and yelled and swore, they countered with compassion, and lo, I calmed, no brutality needed, not even IM medication. They had no need or use for cruelty at YNHPH. I felt they sincerely wanted only to understand and help me heal.
Appreciating the shock and trauma of my IOL stay, each staff member I dealt with did everything in his or her power to prove that hospitals do not have to be brutal or abusive. At the IOL they pretend to use “best practices” but in truth it consists only of coercion and control. Treatment at Yale was in fact the “best practice” possible, and it consisted mostly of being consistent. Consistent in being patient-centered, trauma-informed care, consistent in being not cruel and uncaring, consistent in being humane to each and every patient, consistent in extending a compassionate hand and heart to every patient and reacting in a different and more constructive fashion than did the staff at the IOL (or at Middlesex or Manchester etc).
And you know, though I was still the same person with the same problems, loud and angry at times, even “violent” to property in my frustration, and still psychotic, they never responded with a show of force. Why would they? At Yale it would be absolutely anathema to deliberately frighten a patient. What would be the purpose in that, they would think…. They also never showed up at my door with forced medication or pushed me into a seclusion room or strapped me down in punitive 4-point restraints, or any of the other ill-advised responses that my PAD explains are the worst things to do to anyone who is struggling, scared and paranoid. In point of fact, Yale Psychiatric Hospital’s Washington Square unit does not have a seclusion room. They also have a “restraints-free” policy, so they didn’t use those at all either.
The IOL on the other hand with its “We only use restraints and seclusion if we have to
“ policy, restrained me countless times, and for many more hours than was even legal. When I woke up that last morning I spent there, the room opposite me was occupied by yet another person in restraints! That is because, you know, once you allow a staff to use restraints a little, it only takes a little to use them a lot. And once you sanction the use of restraints and seclusion at all, it is only time before someone abuses them and abuse becomes the norm.
Some final points:
CMS regulations on use of Restraint and Seclusion
Restraint or seclusion may only be imposed to ensure the immediate physical safety of the patient, a staff member, or others and must be discontinued at the earliest possible time.
(ii) Seclusion is the involuntary confinement of a patient alone in a room or area from which the patient is physically prevented from leaving. Seclusion may only be used for the management of violent or self- destructive behavior. This means that IOL’s definition of seclusion as being “kept alone in a room to which the door is locked” is wrong. I protested that I had been secluded all along, for a good two weeks before they instituted formal seclusion. I was not violent or self-destructive, and certainly not imminently dangerous to self or others…NEVER was anyone in immediate physical danger.) Yet you allowed them to abuse me and seclude me because I was loud and made people uncomfortable…Instead of dealing with me, you let them torture and punish me. WHY? WHY? Why? I want an answer to this question.
“The highest price of all is the price paid by the people who are restrained: their recovery is stalled by a practice that can disempower them, break their spirit, and reignite a sense of helplessness and hopelessness…” from Recovery Innovations
Worst of all, using restraints doesn’t work to make either the patient calmer and safer or the unit a calmer safer environment to work in for staff. In truth, things only go from bad to worse once you restrain an unruly patient…Violence only begets more violence…Moreover, when I was at Natchaug Hospital, i was told by one of their mental health workers that she had wanted to experience the process of being four-pointed herself so she could identify with patients. She was told no, because as the aide informed me, hospital administrators feared it would be too traumatizing.
Where do we go from here? Well, I will never return to the IOL; inflexible IOL policies have no safeguards in place to properly protect patients. I came prepared, Dr Banerjee said so. And yet it did me no good, because all the preparations and advance directives in the world do me no good when staff is given carte blanche by their own director to ignore them.
So where we go from here is largely up to you. You can simply ignore what I have written, tear these sheets up, justify all staff behaviors and throw away my complaint as meaningless information. After all, Dr Mucha, you are retiring in a few days, so you can leave all this behind without a care in the world. Ms Blair, even you don’t need to believe my words, you can simply trust the superficial, documented words on the chart, and if necessary, the lies of staff as to what happened. What you don’t know won’t hurt you. But lies they are, and lies they always were, even as they told me what they were going to write in order to get away with restraining me as punishment. The problem is that not everyone was so clever as to cover her footprints, so once or twice the truth was written down and not corrected later. I will show you those pages if you wish to see the evidence I have.
The problem for you is not that I am going to sue you for malpractice, No lawyer is going to take my case on a contingency basis. No one in this country or anywhere in the world cares about a mental patient who was tortured in an abusive hospital situation but didn’t die. I would be worth money dead, yes, but not alive…Your staff knew this and that is why they knew they could get away with it…No, the problem for you is strictly moral, one of conscience. But if you can live with it, then I cannot change a thing.
The IOL could change, it could adopt a philosophy of patient-centered, trauma-informed care, as Yale has done, but that would require changes that would involve every aspect the unit. I doubt IOL administration has the ethical or moral fiber or the political will to do it. I think you choose to remain a brutal, backwards and controlling institution because it feels easier and you believe it is cheaper, though both notions are mistaken. Sometimes it just feels easier to think mistaken thoughts than to challenge them and learn to think in new ways, absorb new paradigms. This is unfortunate because in the end the IOL would save money and patients would heal with less trauma, if you implemented changes that actually worked rather than resorting to the old ways of cruelty, coercion and abuse.
That is all I have the time and energy to say, for now.
This is the most recent piece of house art that I have done. It is an imaginative rendering of a house on the Broad Street Green in Wethersfield. I wonder if the owners would recognize their antique white farm house now? Anyhow, I thought the house come out okay, but I am not skilled at drawing a veritable forest of towering trees , not yet at any rate!
Okay, so maybe I only found ten instead of 11, I am not certain any more. Frankly it takes me a good hour to discover and vet each site so I give up. I cannot take this any longer, so I am going to simply have to leave the requirements for the award as it is, and say, I did my best. I really did. And you will have to accept that. So here are my ten or eleven nomines for the on-going Liebster Award. They are in absolutely no order of preference except for my computer’s having a mind of its own and ordering them the way it chose by its lonesome.
http://claireahriana.com for her brand new site Cooking as Medicine (nothing much there yet, but it sounds so promising…And the phrase “food is medicine” just clicks because it has enormous significance to me, coming out of my own past)
http://chadpotts.wordpress.com My Rollercoaster Life with bipolar illness
http://milerunner.me run a mile day and you will feel on top of the world…Exercise has its perks and peak experiences!
http://todadwithlove.wordpress.com Vera Poh’s lovely literary blog
http://uneasyawakening.com Bipolar Musings
http://greenwake.wordpress.com a sustainable experiment with living as green and economically with the earth as possible. Go for it!
http://blueowltreats.wordpress.com outdoorsy 24 year old post-grad living in beautiful Vancouver, BC recently started this blog to share her love for baking and crafting
http://thevegangreen.com amazing no sugar raw brownie recipe, among others.
http://carlynnforst.wordpress.com “the fancies of a working artist”
http://mindwithoutahome.com a poet with alcoholism and history of schizophrenia, with a memoir coming out in August
And here are the questions these bloggers need to answer:
- What is your name and what name would you choose if you could have given yourself your dream name, and why?
- If you were a multi-billionaire, like Bill Gates or Warren Buffett, what do you think you would do with your money? (Dream big!)
- Apple or pumpkin pie at Thanksgiving? Or do you abstain?
- If you work, what do you do and would you rather be doing something else?
- If you do not work, what are you doing instead, and if you would prefer to be working, what is your dream job?
- Everyone has stolen something in their lives…For instance, I stole sand from Mrs Pappas’s beach at Wequaket lake when I was about five. Six red plastic pails full in fact, and she had a fit and almost called the police but her sand was so very white and soft and ours was nasty and full of seaweed. Luckily, my father was not impressed and just laughed at her…Anyhow, what did you steal and why and what happened?
- What was your most powerful learning experience. Was it in school or on your own, outside of school. What did you learn and has it served you well to learn it?
- Have you ever experienced an amazing coincidence, met an angel, had a miracle or something along those lines? Many people have and are happy to talk about it, If you are one of them, I would love to hear your story.
Alternate to 8, if the answer to above is No:
8a. Why blog? I mean this. Why does anyone blog when there are apparently more than 4 billion blogs out there competing for attention. I would like to know..
9. What is more important, Truth or Kindness. Yes, I know you can be truthful and also kind, but this is my Leibster Award and I get to ask the question. So you have to choose one or the other and tell me why you chose the one you did. Truth OR Kindness
10.What are your core values in life
11. If you could make everyone in the world do one thing, change one behavior or exchange one material good for another, what would it be, and why.
Finally here is a recap of the rules for the Liebster Award in general, so the Nominees can be sure they know what to do.
The Liebster Award is given to up and coming bloggers who have less than 200 followers. So, what is a Liebster? The meaning: Liebster is German and means sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome. Isn’t that sweet? Blogging is about building a community and it’s a great way to connect with other bloggers and help spread the word about newer bloggers/blogs.
Here are the rules for receiving this award:
1. Each person must post 11 things about themselves.
2. Answer the questions that the tagger set for you plus create 11 questions for the people you’ve tagged to answer.
3. Choose 11 people and link them in your post.
4. Go to their page and tell them.
5. No tag backs!
Wow, I finally did it, I finished the Liebster Award requirements. I thought I never would. Apologies to any of my own nominees upon whom this places too big a burden. You need not accept the crown! Now, to find that blasted Icon and see if I can get it to paste onto my front page. I do not think I can get the image widget to work, it has never worked properly alas, so I don’t think it will now. But I can try. It would be nice if the Leibster Award Badge would post after I went to all the trouble of finishing the award requirements! If not, well, so be it but what a shame.
A lot is going on now, ever since I’ve been back in town after my vacation in North Carolina visiting my brother. I will write more later.
I feel like screaming, I am a human being, you effers, treat me like one! But of course, that is what I would say only to one group of people, the hospital personnel who so tortured me, and not everyone does that. Though I get this sense that a lot of people treat me like I am my diagnosis and not a real HB…if you know what I mean. As soon as they know you carry some sort of MI Dx, and I do not blab about that, but they find out, esp if they know the meds I take, then they suddenly do not trust me any longer, trust that I live a life that even remotely resembles theirs. Suddenly they seem to believe that I am not like them in anything that they could possibly begin to believe in. Or worse that they cannot “get into my mind” and therefore they assume that I live in some world that they cannot possibly comprehend either…
Weirdly enough, I live assuming the precise opposite, that our worlds are pretty much the same, that what I think, they pretty much think. I assume that whatever differences there may be, they are very small when it comes right down to it, and that they are miniscule in the larger plan. So it hauls me up short when I realize that they believe they cannot understand me. And are afraid of me and do not want to try to get to know me, because of that fear. And it makes me feel VERY MUCH ALONE.
You who are married or have relationships or have had them in the past, you do not know how lucky you are. I never have. I have never loved anyone, nor felt that I was safe with someone and not going to be abused or taken advantage or or simply that I was with a person I loved and was loved by and was their first priority. Not someone who was my peer. Yes, for 7 years I was, I think, my father’s priority, maybe his first priority, I dunno. I felt cared about and loved. But he was my father and he owed that to me. I ought to have felt that way all my life. All children should feel loved and cared for by their parents…no matter what.
I feel so alone, so alone. I do not know who to turn to or who to talk to. I do not know what to do or how to stop this juggernaut from sliding down into the abyss, taking me with it . It started with the headache all week, which went away yesterday but came back with a vengeance again today! I feel like no one in my family cares about me or even likes me except perhaps my brother, and he may do so on sufferance, I dunno. I do not trust anyone…
How can I? I have been so broken by people who said they cared about me and wanted to help me and then tortured me (hospitals) or abandoned me (my father) that I have no reason to trust or love…I do love my family, mind you. I even like them all. But it doesn’t even matter to them whether I love or like them, my like and love are meaningless to them, worse they are burdensome to them.
I sense that this is often the case, and it is why I have never bestowed my love on anyone: people do not want my love, not my real undying love. They would fear it and hate it. It would be a huge burden on them. So I haven’t burdened anyone in the world with my love ever. Because I would never do anything so evil to anyone, not even my worst enemy…though I do try to practice love thy enemy, as I have said, and I try to make my enemies my best friends. Nevertheless, I would not in fact give my enemy the worst burden of all, the loathsomeness of my heart. Who could stand it, who could tolerate it? I would rather die than think that I had so oppressed any person with something so intolerable.
But oh, how I cry to think that I am so loathsome, and why is it? Who and what am I that I am so disgusting? Why did I turn out this way? I always tried to do good, and to do it secretly so no one would be embarrassed or have to thank me…and now what am I but a disgusting turd who only oppresses the world with her presence. Whose love and heart would only horrify the person to whom she gave it…Not that I would dare do so, but that is because I understand the horror of such a gift-curse.
How did this happen? What happened? It will never change, I know that. It is a fact of my existence, of Existence itself. My father cared about me, but he also know how burdensome I was…He was glad to die and leave me, I think. Or perhaps he could handle my loathsomeness because he didn’t have to deal with me much…Who knows. All I know is that I am alone, alone, alone…and I will never be anything but alone. How can I go on, knowing that? Oh, I will. I will go on. But how do you? Faking it, always, pretending to people that all is fine and dandy, because no one wants to know how awful things are, NO ONE. If they did, it would only be another intolerable burden…
So you fake it and smile and go on…That is all anyone can do, right? Stiff lower lip and square your shoulders and pretend it is okay. Because you have to have people like you, or smile at you…or you will die. And unless you want to die and you do not, you need those fake smiles back at you for food to relieve the loneliness that nothing and no one will ever fill.
Sorry about this post, but i had to write it. I had to get it off my chest or I would have cried all evening. I promise I am working on the Liebster Aware, slowly but surely. I still need to get all the 11 blogs in order, and the questions written, but I plan to do that on the train to NC on Wed. Perhaps I will have it all done by the time i am back on the 17th. My apologies for the self-pity in this post. I try not to sit there, but I cannot always keep my head above water, or my arse off that pot. I’ll try to do better. But if I cannot be honest here, then I won’t continue to write. It isn’t worth it to lie here and have to lie about how I feel everywhere else as well. Okay?
Thank you for listening, if you did. Thank you from the bottom of my impoverished, dried up, lonely old heart.
I wanted to add certain comments that were particularly to the point. Here is one or two from Lady Quixote:Dear Pam,
I liked this post, although I hate that you are in such pain, I like the honesty, I applaud the bravery, very very much. And oh yes I do understand, I relate with all my being, to virtually every word you wrote in this post, and in these your comments, too. Both comments.
As I’ve told you, I am writing a memoir about my similar history. I’ve changed the working title on my book a few times: From Here To Insanity, Healing From Broken, Growing Up Crazy, and some others. The working title I have now is my favorite. I’m now calling my book GOING CRAZY, a memoir of horror, hope, and healing.
The pain, the loneliness, the “shame” and isolation of having a been labeled Mentally Ill…. the label is a curse that hurts as much, if not more, than the disorder itself.
Here are the words I have on the cover of my memoir-in-progress, words that echo this post to the marrow of my bones. I have this on the front cover:
Mental illness seems to run in my family. (So does Protestantism and the tendency to vote Republican.) What causes mental illness: nature, nurture, or a combination of things? After a series of traumatic events, I had a “breakdown” at age 14 and was put in an insane asylum for 2 years. For the past 4 decades I have tried to forget my allegedly schizophrenic episode. But when I learned—in the midst of a family crises—that my first great-grandchild was on the way, I embarked on a Madness Marathon in search of answers.
And this is on my back cover:
Was I Cured of Schizophrenia? Do I Have “Complex” Post-Traumatic Stress Disorder?
MY MIND WAS BROKEN—DOES THE “LABEL” MATTER?
The extreme childhood trauma that caused my mind to shatter was painful. Being diagnosed with schizophrenia at age fourteen and placed in a state insane asylum for almost two years was even more painful.
But my most damaging experience by far has been the shame and isolation I’ve lived with for over forty years, caused by the demoralizing stigma of having been labeled “mentally ill.”
For most of my life I’ve tried to hide my history. Now I’m telling my story to help transform the hurtful prejudice borne of ignorance, into the healing mindset of understanding and compassion. Having recently become a great-grandmother, I feel compelled to write my memoir as a legacy of truth and enlightenment for my adult children and grandchildren, who have suffered so unfairly as a result of my emotional wounds. I am also sharing my story for anyone with a background similar to mine, to let you know you’re not alone.
I’m sending you love and hugs and compassion in my heart and mind right now. I hear you. Loud and clear. I have stopped communicating with a sister who refused to honor my request to please stop passing messages on the me from our mother, particularly the “tell Lynda I love her” messages. NO, my mother does not love me. Her actions have proven it over and over and over again. I told my youngest sister: “I’m not asking you to agree with me or believe me, I’m not asking you to take sides. We can agree to disagree about whether or not our mother loves me, that’s OK with me. All I ask is that you please stop telling me that she does.” My sister said nothing, no response of any kind to my request. Then a few weeks later she posted right on my Facebook wall, on Christmas Eve of 2012: “Merry Christmas Big Sis, and Mom says to tell you how much she loves you.” I deleted that message off my wall, and my sister then deleted her account… so I deleted my account, for over a year, only coming back to FB a couple of months ago to keep up with my grandchildren.
I think we know when we are not loved, when we are not wanted, considered an embarrassment and a burden. I have grown nieces who do not know me, but they would post rude things on Facebook about me because I was locked up in an institution and diagnosed with schizophrenia 46 years ago. I was released from that place 44 years ago. I have had numerous doctors and therapists over the years tell me that I was misdiagnosed, I had PTSD or something else. But in my family of origin’s eyes, all but a couple of my relatives still treat me like the embarrassing crazy lady…. it HURTS. Yes it does. It EFFING HURTS. Worse than the pain and horror of “going crazy” in the first place. You SEE it in their eyes, you HEAR it in their words, their tone of voice, you DISCERN it in their body language, that “jumpiness” that 99% of the people get when you tell them, or they otherwise find out, about your MI Dx. It’s like a mask comes down over their face…. and you feel that ARCTIC CHILL, the deep-freeze of being frozen out.
Also, Pam, in a marriage the loneliness and the judgments, the raised eyebrows, the rolled eyes, the heavy sighs, the thoughtless comments, such as my now EX husband made to the intake nurse at Johns Hopkins University Hospital Psychiatric unit, where I had gone voluntarily hoping for HELP with my then-intractable depression. In describing the harrowing traffic in the streets of Baltimore as he had driven me to the hospital that day, my now EX quipped: “The traffic was so bad, I thought *I* was going to go crazy, HAHAHA.”
NOW I am lucky, NOW I am married to a man with severe chronic PTSD from Vietnam combat, a man who has spent time as a patient on a psych ward, so he UNDERSTANDS and does not hold himself above me or apart from me.
I’ve said it before, I’ll say it again and again and again until I die: The CURE for all types of mental illness labels must begin with CARE: Compassion, Acceptance, Respect, and Encouragement. Everything that is the opposite of the shunning, the subtle cold shoulder, the jumpiness that we can SEE and FEEL and HEAR because, yes, dammit, we may have a screw loose here or there, but we are not stupid, deaf, or blind.
Oh no, I just went back and reread my comment, and it’s full of typos. So sorry, I was writing in my emotional part of my brain, not in the editing part. Also I put that the message that made me go off FB for over a year was posted Christmas Eve of 2012. Obviously that’s wrong, it was 2011.
Brenda, I wanted to tell you that I appreciate the things you wrote, too, particularly the part about our need to be kind and loving to ourselves. So true. It’s also very true, what you said about hospitals being an unnatural setting, and that we cannot read minds, and there may be times when we are mistaken in thinking that certain people do not really like or love us. I do believe that is also true. However, that jumpy feeling you so honestly said you feel when you discover that someone has an MI Dx,,,, thank you for being so honest, and yes, that is an all-too-typical response, and it is THAT RESPONSE, that involuntary attitude of the general public toward people with certain mental illness diagnosis, that jumpy reaction is very easy to discern. And it may be involuntary and unintentional and even understandable, thanks in large part to how the media portrays people with serious MI labels, BUT.IT.HURTS, when YOU are the one being looked at and talked to like you are a freak, the boogie man, a strange and unpredictable creature from another dimension.
I am lucky to finally have my “certifiable” husband, whom I did not meet and marry until we were both in our 50s, and our sweet fur-baby Cattle Dog, who doesn’t know a thing about Mental Illnesses and couldn’t care less, so long as we feed and water and walk her and give her lots of back rubs. I worry about you, Pam, feeling so alone. Loneliness is a soul killer. I know, for I have spent the vast majority of my life feelings just as alone as you describe in this post, yes, even when I was married. In my experience, there is nothing more lonely than being married to someone who talks down to you and treats you like the worst of the personnel in the psych hospitals treated you. I don’t know why a man who looks down on the mentally ill would even want to marry me in the first place, when I had not ever hidden that part of my history from a potential husband. I can only surmise, based on how I was treated, that a man like that is looking for a woman he can control and verbally and even sometimes physically abuse, cheat on her and do whatever the heck he wants when he wants, and feel all justified about it and superior to her because, after all, his wife is “crazy.” I would rather live all alone under a bridge and eat out of garbage cans, to ever be in a marriage like that again!
Note to Lynda from pam: i looked and looked but just could not find any typos to correct for you…sorry. The date part i let you correct in your note, but the spelling typos just do not exist so far as i know or even that spellcheck can see. I know that there could be homonyms that were misspelled, but i did not detect any of those either. So there! 8) thanks for your brilliant addendum!
Sorry…I do get some breaks with Imitrex, but not complete and not for long. Then the pain returns in full and I cannot take another for 24 hours. Or at least 12 hours if I get desperate. I try to wait 24 hours though because I do not want to get a rebound headache.
Anyhow, I am still slowly trying to gather 11 blogs for the rest of the Liebster Award, so I haven’t forgotten that obligation. It is still in the offing, along with everything else in my life that gets put in abeyance when I get a monster migraine. Okay. It’s back to lying down and being still. Thanks for your support everyone. I’ll be back soon.
in the midst of a heat wave, with a broken air conditioner, which is why I haven’t finished the Liebster Award or anything else. All in due time, all in due time. Sorry but that is how it goes. The best I can do is post an unfinished painting of mine, which has nothing to do with anything but might partly express a migraine: a black widow spider gripping a brain (though there is no expression of pain on this face). Note that of course the Black Widow has a Biohazard sign on her back or belly instead of the usual hourglass. I was going somewhere with that, but the black paint took so long to dry that I got distracted and finally wiped it off and now it is sitting a shadow of its former self on my easel wondering what I am going to do with it now!
In this godforsaken heat I have made myself a cup of coffee thinking maybe that would help my head, but now I cannot get myself to drink it. So I sit, without airconditioning, in the heat, with this terrible headache, feeling like crap and I really shouldn’t write any more lest I write things I will regret later. So, I will only bid you a pained TTFN (Ta ta for now).