What are/were the most significant barriers to your recovery from “mental illness”?

The biggest barrier to my recovery from what had always been diagnosed as schizophrenia or schizoaffective disorder was, I regret to say, the mental health system and psychiatry itself. Yes, for many decades I had been told I was ill and needed interventions like medications and the hospital for my “brittle psychosis”. I was told even that obvious brutalities, like 5-point restraints and seclusion in locked freezing cold cells, devoid of anything but a slab in the wall and a grate in the floor for drainage, were helpful treatments for my condition and not the torture and punishment that I felt them to be. No one or very few people treated me with kindness or any understanding or with the idea that there was hope for recovery, even though I had a genius level IQ and had shown some significant talents in many areas, and still did even when sick. They seemed bent on only one thing: coercion and control, and to prove that they were able to dominate me, and the other patients. If you dared to question their superiority or their information you would either be dismissed as delusional or worse, treated with more abuse.

 

Needless to say, I lived up to these expectations for many years, and i did not get better or even come near to recovering. In fact, before I took the drastic step of giving almost all I owned away and leaving my home, the state where I had lived for all my life and moving to another 100 miles away, by myself, knowing no one and nothing about it, I ended up again in the hospital and almost did not make it out. Not only did the guards there attempt to strangle me, but the doctor was convinced that I should be committed to the state’s one public facility that provided long term treatment…from which I might not leave for a long time.

Instead, I managed to play the game this sadistic doctor insisted on, and was finally discharged from a city hospital that had spent weeks doing nothing but torturing me, daily throwing me into their seclusion cell or shackling me in restraints …for no better reason than that I “disturbed the unit milieu”.

But discharged I was, with newly acquired PTSD from my treatment there, and within a week I was two states away, safe for the first time from these ministration that had inflicted on me nothing but damage.

It was here, in this northern state that I finally began to heal, with the help not of the mental health system but of a non-licensed therapist (she has a psychotherapist license from the UK) who taught me Marshall Rosenberg’s non-violent communication or NVC, and is the first person I felt sees me for who I really am, not “just another schizophrenic.” Even though I still take medications, I am slowly tapering off of them and doing well after decades on the massive doses I was told I absolutely could not survive without. Why? Because I’m proof of the fact that you can recover from life-long “mental illness” when given enough unconditional acceptance and understanding. When someone sees you and understands you and does not dismiss you, crazy as you might have been told you are, a lot of the craziness just falls away and you become another human being, no more and no less.

There is no normal, there is no abnormal. We are all just human beings trying to get along in society and often society is sicker than “we are” in its demands that we conform to some impossible standard. Maybe my experiences — hearing voices, thinking things that might be called delusions, etcetera — are not common but they are not outside the realm of human experience either. We should rejoice in our differences as in our similarities and look for common cause between us, not find reasons to fear what is Other in each other. Love really is what it’s all about. Maybe that sounds squishy and sentimental, but have you ever met someone diagnosed with schizophrenia who says they both love themselves and feel that they are adequately loved in the world by others?

Institute of Living, 2013, Torture and Illegal Confinement Part 2

Restrained at the Institute of Living 2013

Continued from previous post:

Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:

“Studies suggest that restraints and seclusion can be harmful and is often re-traumatizing for an individual who has suffered previous trauma…

“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.

“Moreover, some studies indicate that seclusion and restraint use lead 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. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without severe 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, that is to say, 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 so-called side room” last winter. I do not know how many times I called  the patient advocate office, but the sole time anyone made contact was when she came to hand me some paperwork – I believe I was actually in 4 point restraints at the time – some papers I could not read about a forced medication hearing they would be holding. I needed her advocacy, but she never responded to my panicked called. 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 (about which my feelings of horror and revulsion were stated clearly in my PAD).

And where did the ECT discussion come from at all? My PAD states 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. He told me that “Dr Mucha and I have made the decision to force you to have ECT.” I recorded the conversation in my journal immediately  after it happened and Dr. Banerjee presented it as a two-man decision only, one that I had no choice in.

Regarding ECT and my so-called “depression,” Sanjay Banerjee MD 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 nodded my head, assenting to the change. 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 to take Lamictal, a drug I had not taken in 6-9 months. Now he was applying to force me to have ECT, something I was terrified of, convinced it caused deliberate brain damage.

It was this threat, and the brutality with which the decision was made, 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 Banerjay and Laurie to read across the table in front of them. They refused, claiming that I threw the papers at them. Instead, Dr Banerjay proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.” I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.

It could have ended there. I could have been left alone, to cool down and calm myself. But no, Dr. Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, i.e. physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was not hurting anyone. I did not threaten anyone or myself with harm. ALL that I had done, in terms of physical threats was yell at the phone and refuse to take a pill. 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 things to a better resolution not only for the situation at hand but for my entire hospital stay. As a famous poem by Dylan Thomas ends: “After the first death, there is other.” Once the IOL staff decided to use restraints, there was no going back. The first time broke everything. So, they used them again, and again, and each time more freely and without justification but for convenience and punishment.

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.

At no point in my stay was anyone ever in immediate physical danger except me, from the staff who were assaulting me…They may have claimed that I bit and fought and resisted, but this was always in response to their manhandling me first. Always. In fact, my medical records show they had restraints re-evaluated and approved while I was sleeping. They even discharged me from the hospital directly from restraints and seclusion, on a day when the usual attending physician happened to be out of town.

(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 the IOL allowed staff to abuse me and seclude me because I was loud and made people uncomfortable…I was surely not the first person to be so treated and brutalized. It remains traumatizing to this day, and I know it is still happening to patients at the IOL even now, because no one can stop them if they don’t know it is happening. Due to this sort of brutal treatment, my PTSD escalated. I think about what happened there and I can’t stop trembling. I have nightmares every night that literally keep me from sleeping.

“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 another hospital, I was told by one of their mental health workers that she had wanted to experience the process of being four-pointed so she could identify with patients. She was told no, because as the aide informed me, hospital administrators feared it would be too traumatizing.

Restraints are traumatizing, let’s face it, in order to restrain me the manifold times I have been brutally restrained, putting up no resistance whatsoever, even the most jaded and brutal should have felt a twinge of conscience and questioned why he or she was doing. Unless they had become so inured to cruelty that they no longer considered it degrading and obscene to spread-eagle a naked woman, shackling her legs to the bed posts, so hardened to sadism that they did not consider tying her wrists to the underside of the bed as torture, only a mild form of discipline,  meted out in order to teach her the lesson they had decided to teach her…

I hope you manage to read this letter and look at the supporting materials. You could learn a lot. You have more power than I do in this world, and could change things, if you know they are happening and are wrong. I beg you to think about what I have written to you. The IOL is not an isolated case. Brutality happens in nearly every psychiatric ward and hospital in Connecticut, and I believe this is the reason: As long as seclusion and restraints are permitted in any fashion, brutality and abuse will continue and at rates that are higher than where they are eschewed.

The problem is not that there may remain some exceptional cases who, it is claimed, will need to be restrained, but that someone somewhere will start finding such exceptions and boom, we’ll be right back where we started, with abuse and mistreatment of the most vulnerable. I believe the only way to stop the abuse of seclusion and restraints is to simply stop using them, period. Killing in self-defense is a good defense in law, and every decision to use restraints should be evaluated with similar strict thinking. Say No, we don’t go there, first, and then if done, know that it was a violation of the law and harmed the patient above all else, but under some conditions, this is the lesser evil compared to what might have eventuated without their use.

Now hospital workers are allowed to use restraints and seclusion as legitimate forms of “treatment. But when you permit staff to use violence against even one patient, it imbues their culture with an acceptance of violence as a treatment modality rather than something criminal. Restraints help no one. They are always retaliatory. Always discipline and punishment. Oh, in the short run the unit may seem quieter and easier to manage, but in the subsequent days, when the prisoner in restraints re-enters the community more chaos than ever may ensue.

Please help me. Do something about it today.

 

Institute of Living, Hartford CT, torture and illegal confinement in 2013

Part One

4-point restrained at the Institute of Living 2013 routinely for 19 hours or more.

Let me introduce myself. My name is Pamela S. Wagner, and I was for most of my 65 years a resident of Connecticut. I have a long history diagnosed with serious mental illness and have been on disability for many years because of it. Five years ago,  I was admitted to the Hartford Hospital’s Institute of Living on a 14-day PEC. I would like to tell you about some of the grotesque brutalities that transpired there and the egregious “treatment” that passes for care in that hospital.

Ever since I was discharged from the Institute of Living in February 2013, to which facility I had been committed as an involuntary patient under an order known as a Physicians Emergency Certificate. I have felt too terrified even to read the partial chart which the Connecticut Office of Protection and Advocacy obtained for me. Indeed, every time I recall what I am able to, or reread the brief nursing notes about what was done to me that winter at the IOL, my heart races unbearably, my body sweats and shakes and I start crying. Even so, because of trauma-induced amnesia, I remember the month I spent there only vaguely and in “snapshot” or flashbulb-like moments” of clarity. It is only now that I have acquired these few records, and learned some of the details of what happened that I’m finally able to put some of the pieces together.

Before I say anything further, I want to say that I believe that I was grievously injured by the “treatment” I received on Donnelly 2 South, and that what the staff did to me was not only unethical and cruel but that it crossed the line into illegality more than once.

I was admitted to Donnelly 2 South, and right from the first I made it clear that I wanted to witness their searching my knapsack. I wanted to know what they confiscated from me. They assured me that, Yes, of course, that is our policy, Don’t worry, Pam, you will have ample opportunity to watch us search your bags… I calmed a bit and followed a nurse to a closed room to do an intake interview. When she released me to the Day Area, I was shown to my room, where I found on my bed, my already searched knapsack and bags. Needless to say, this upset me greatly and I made my feelings known, which did not endear me to anyone. I let the charge nurse know that I felt violated and that she had openly broken a promise and my rights, posted prominently on the hospital wall.

As the Donnelly 2 staff learned, I had arrived prepared with a detailed Psychiatric Advanced Directive and I made it very clear that my online electronic medical record was accessible from any computer. I made the Read-Only access code available to the doctor and nurses. That 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 (also my psychiatrist from 2000-2009.) Included as well was a letter she wrote to my present psychiatrist, Dr.  C, explicitly stating her conviction that I do not, and never did have a personality disorder, borderline or otherwise, a conviction that Dr C also held.

According to Dr. Sanjay Banerjee, the doctor who first took over my care, he read every page of these and all the other documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr. C, my outside psychiatrist, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, P, himself a psychiatrist, brought the same matter to the fore again when in discussion with Laurie Denenberg, LCSW. Again, her response was much the same: “Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such a document.”

Nevertheless, Amy Taylor, MD, the doctor who took over my care after Jan 27th decided to summarize my psychiatric history from this stay in words such as these: “long psychiatric history of schizophrenia, paranoid type, PTSD, and personality disorder NOS with borderline traits.” I was treated for four weeks for an active psychotic disorder. No one could know – especially with the significant additional diagnosis of PTSD, whether or not I had any personality disorder, given the two Axis I diagnoses already present. I believe she decided to use this diagnosis as a way to “justify” the brutality that she had ordered to be used to punish me during the hospitalization I write about.

As I said, I was on the Donnelly 2 unit for almost a month. But I was admitted on January 10, 2013, right into to seclusion because of putative “blepharitis.” They called it “infection precautions” but never took a culture of my swollen eyelids to determine if there truly was any infection present. They simply said it had to be blepharitis – as if saying so meant that it was so (but the fact is that blepharitis generally speaking is a benign non-infectious condition, and one that doesn’t produce massive swelling in the entire facial region). There were other factors however that accounted for my swollen face: prime among them the self -inflicted second degree burn on my forehead the size of a half dollar. Knowing this, the fact that my face had swelled to 1½ its size should not have surprised anyone. Blepharitis? The doctor was looking for zebras instead of seeing the common nag right in front of her…

I know I was a difficult patient. I was loud and paranoid and hard for some staff to deal with. That is precisely why I wrote out my Psychiatric Advance Directive the way I did, with explicit and detailed instructions for how best to deal with me when I was upset… When ill, I am frightened, paranoid, and hostile, which makes me easily roused to irritability. I know this, from a distance as it were. But knowing this now does not mean I was in full control of my behavior at the time.

On Feb 5th, I was being held incommunicado in the so-called “side room”, which, when I called it seclusion, the staff insisted it was not so. That afternoon, I simply walked away from it. I had had enough of them saying it was not seclusion, then preventing me bodily from leaving it. So, when I could do so without someone actually wanting to fight me, I walked away.

I proceeded to enter the unit and walk down the hall to the end and looked out the window. I took a deep breath, heard  staff behind me, and sauntered back to the proper end of the hall, the “lost end” where they kept anyone from seeing me or knowing what they were doing to me. Once I got there, they descended upon me, some staff I knew, but most I did not. I did not bother to look at who was doing what to me. I simply lay passively on the bed and put my arms where they could do what I knew they would do. Tightly, they shackled my wrists out past my hips so there was no play in the restraints and I could not turn on my side or do anything but lie stiffly on my back. At the same time, others jerked my feet apart and just as tightly shackled my ankles to the lower corners of bed. Then came the coup de grace. They twisted me over onto my side somehow, pulled down my pants, and injected me with three drugs: Haldol 5mg, Ativan 2mg, and Benadryl 50mg. Why, except as punishment I do not know. I had, just a half hour before, been doped up on involuntary Zyprexa 10mg. Then they walked out, leaving someone just outside the door for the usual monitor, and did not release me for 19 hours, despite the fact that I was sleeping much of that time.

Of course, this was punishment. The very fact that they told me it was “not punishment” only “what your behavior brings on every time, Pamela,” proves my point. At first and usually they only said, it was because I “didn’t follow directions” so if they were not punishing me, what were they doing? They most certainly were not following Centers for Medicare and Medicaid regulations for the use of Restraints and Seclusion only in cases where a person is in imminent danger of harming her self or others. Indeed, the best they could do, when I protested, passively, saying just those words, was to respond, “You are not safe” as if that proved somehow that I was in danger or posed any imminent threat to the safety of anyone.

They always restrained me in an X, spread-eagled so tightly I couldn’t move a muscle. They never permitted bathroom breaks or even let my hands free to eat, so several times I had to pee and even defecate in my clothing. I would fall asleep rapidly after those three injections–whether I was restrained while calm or not, it was routine: punishment needles in the buttocks of Haldol 10mg, Ativan (up to 5mg at one time) and Benadryl 50mg—and then they would invent reasons to maintain me in restraints even after I was asleep for hours. When I woke, hardly dangerous to anyone, they would grill me with questions that I was too groggy to answer, and they would use my inability to respond as reason not to release me.

Later in the evening on Jan 5 or 6thth, for the second time that day, they restrained me, this time for throwing half a graham cracker at the wall. Then they left me like that for 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 “deserve” them in the first place. They always refused to release me,  always, until I cried, “Uncle” when they told me to.

As to those vaunted “shows of force” what does anyone expect? Presented with a cohort of threatening staff personnel I saw only 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? (which when you think about it is grotesque…What sort of person wants to induce fear and more panic in someone who is by definition already terrified?) But 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 survival instinct…

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 comprehension, knowing that one of the admission diagnoses I came in with was PTSD, how the director of patient care at the time pre-approved on paper the emergency abrogation of my PAD and a “just in case they are needed” use of restraints and seclusion. Why didn’t he counsel the person asking for this advance “right to restrain” to do instead all in his power not to restrain me and to work with the PAD instead?

TO BE CONTINUED… SEE NEXT ENTRY.