My picture NOT WAVING BUT DROWNING will be in this show. Click on link to see full color information
My picture NOT WAVING BUT DROWNING will be in this show. Click on link to see full color information
Please listen to this. You will find Cortland Pfeffers intro fascinating, and of course pamela as usual has much to say!
Here is a little new art to entice, just a small drawing i did while at fhe hostel in Boston during the Hearing Voices Congress. I hope to post that power point soon.
Just want to keep people aware that these things are absolutely continuing to this day. They have not stopped persecuting psychiatic patients just because YOU dont hear about it. Every single thing in this post has happened to me within the last five years, and is still happening to others. Remember, and dont forget it! Your relatives may not talk about it, but it is happening to someone.
Report prepared for the National Head Injury Foundation
September 1991 by Linda Andre
Electroshock, variously known as electroconvulsive therapy, ECT, shock treatment, or simply shock, is the practice of applying 70 to 150 volts of household electric current to the human brain in order to produce a grand mal, or generalized, seizure. A course of ECT usually consists of 8 to 15 shocks, administered every other day, although the number is determined by the individual psychiatrist and many patients receive 20, 30, 40 or more.
Psychiatrists use ECT on persons with a wide range of psychiatric labels, from depression to mania, and have recently begun to use it on persons without psychiatric labels who have medical diseases such as Parkinson’s disease.
A conservative estimate is that at least 100,000 persons receive ECT each year, and by all accounts this number is growing. Two-thirds of those being shocked are women, and more than half of ECT patients are over the age of 65, although it has been given to children as young as three. ECT is not given at all in most state hospitals. It is concentrated in private, for-profit hospitals.
ECT drastically changes behavior and mood, which is construed
as improvement of psychiatric symptoms. However, since psychiatric symptoms usually recur, often after as little as one month, psychiatrists are now promoting “maintenance” ECT—one electrical grand mal seizure every few weeks, given indefinitely or until the patient or family refuses to continue.
THE EVIDENCE FOR ECT BRAIN DAMAGE
There are now five decades of evidence for ECT brain damage and memory loss. The evidence is of four types: animal studies, human autopsy studies, human in vivo studies which use either modern brain-imaging techniques or neuropsychological testing to assess damage, and survivor self-reports or narrative interviews.
Most of the studies of the effects of ECT on animals were done in the 1940s and ’50s. There are at least seven studies documenting brain damage in shocked animals (cited by Friedberg in Morgan, 1991, p. 29). The best known study is that of Hans Hartelius (1952), in which brain damage was consistently found in cats given a relatively short course of ECT. He concluded: “The question of whether or not irreversible damage to the nerve cells may occur in association with ECT must therefore be answered in the affirmative.”
Human autopsy studies were done on persons who died during or shortly after ECT (some died as a result of massive brain damage). There are more than twenty reports of neuropathology in human autopsies, dating from to 1940s to 1978 (Morgan, 1991, p. 30; Breggin, 1985, p.4). Many of these patients had what is called modern or “modified” ECT.
It is necessary to clarify briefly here what is meant by “modified” ECT. News and magazine articles about ECT commonly claim that ECT as it has been given for the past thirty years (that is, using general anesthesia and muscle-paralyzing drugs to prevent bone fractures) is “new and improved”, “safer” (i.e. less brain-damaging) than it was in the 1940s and ’50s.
Although this claim is made for public relations purposes, it is flatly denied by doctors when the media is not listening. For example, Dr. Edward Coffey, head of the ECT department at Duke University Medical Center and a well-known advocate of ECT, tells his students in the training seminar “Practical Advances in ECT: 1991”:
The indication for anesthetic is simply that it reduces the anxiety and the fear and the panic that are associated or that could be associated with the treatment. OK? It doesn’t do anything else beyond that…There are, however, significant disadvantages in
using an anesthetic during ECT…The anesthetic elevates seizure threshold… Very, very critical…
So it is necessary to use more electricity to the brain, not less, with “modified” ECT, hardly making for a safer procedure. In addition, the muscle-paralyzing drugs used in modified ECT amplify the risks. They make the patient unable to breathe independently, and as Coffey points out this means risks of paralysis and prolonged apnea.
Another common claim of shock doctors and publicists, that ECT “saves lives” or somehow prevents suicide, can be quickly disposed of. There is simply no evidence in the literature to support this claim. The one study on ECT and suicide (Avery and Winokur, 1976) shows that ECT has no effect on the suicide rate.
Case studies, neuroanatomical testing, neuropsychological testing, and self-reports that remain strikingly similar over 50 years testify to the devastating effects of ECT on memory, identity, and cognition.
Recent CAT scan studies showing a relationship between ECT and brain atrophy or abnormality include Calloway (1981); Weinberger et al (1979a and 1979b); and Dolan, Calloway et al (1986).
The vast majority of ECT research has focused and continues to focus on the effects of ECT on memory, for good reason. Memory loss is a symptom of brain damage and, as neurologist John Friedberg (quoted in Bielski, 1990) points out, ECT causes more permanent memory loss than any severe closed-head injury with coma or almost any other insult to or disease of the brain.
Reports of catastrophic memory loss date to the very beginning of ECT. The definitive study of ECT’s memory effects remains that of Irving Janis (1950). Janis conducted detailed and exhaustive autobiographical interviews with 19 patients before ECT and then attempted to elicit the same information four weeks afterwards. Controls who did not have ECT were given the same interviews. He found that “Every one of the 19 patients in the study showed at least several life instances of amnesia and in many cases there were from ten to twenty life experiences which the patient could not recall.” Controls’ memories were normal. And when he followed up half of the 19 patients one year after ECT, there had been no return of memory (Janis, 1975).
Studies in the 70s and 80s confirm Janis’ findings. Squire (1974) found that the amnesic effects of ECT can extend to remote memory. In 1973 he documented a 30-year retrograde amnesia following ECT. Freeman and Kendell (1980) report that 74% of patients questioned years after ECT had memory impairment. Taylor et al (1982) found methodological flaws in studies that purport to show no memory loss and documented deficits in autobiographical memory several months after ECT. Fronin-Auch (1982) found impairment of both verbal and nonverbal memory. Squire and Slater (1983) found that three years after shock the majority of survivors report poor memory.
The highest governmental authority on medical matters in the United States, the Food and Drug Administration (FDA), agrees that ECT is not good for your health. It names brain damage and memory loss as two of the risks of ECT. The FDA is responsible for regulating medical devices such as the machines used to administer ECT. Each device is assigned a risk classification: Class I for devices that are basically safe; Class II for devices whose safety can be assured by standardization, labeling, etc.; and Class III for devices which pose “a potential unreasonable risk of injury or illness under all circumstances. As a result of a public hearing in 1979, at which survivors and professionals testified, the ECT machine was assigned to Class III. There it remains today, despite a well-organized lobbying campaign by the American Psychiatric Association. In the files of the FDA in Rockville, Maryland, are at least 1000 letters from survivors testifying to the damage that was done to them by ECT. In 1984 some of these survivors organized as the Committee for Truth in Psychiatry to lobby for informed consent as a way of protecting future patients from permanent brain damage. Their statements challenge the assumption that survivors “recover” from ECT:
Most of my life from 1975-1987 is a fog. I remember some things when reminded by friends, but other reminders remain a mystery. My best friend since high school in the 1960s died recently and with her went a big part of my life because she knew all about me and used to help me out with the parts I couldn’t remember. (Frend, 1990)
I haven’t had a shock for over ten years now but I still feel
sad that I can’t remember most of my late childhood or any of my high school days. I can’t even remember my first intimate experience. What I know of my life is second hand. My family has told me bits and pieces and I have my high school yearbooks. But my family generally remembers the “bad” times, usually how I screwed up the family life and the faces in the yearbook are all total strangers. (Calvert, 1990)
As a result of these “treatments” the years 1966-1969 are almost a total blank in my mind. In addition, the five years preceding 1966 are severely fragmented and blurred. My entire college education
has been wiped out. I have no recollection of ever being at the University of Hartford. I know that I graduated from the institution because of a diploma I have which bears my name, but I do
not remember receiving it. It has been ten years since I received electroshock and my memory is still as blank as it was the day I left the hospital. There is nothing temporary about the nature of memory loss due to electroshock. It is permanent, devastating, and irreparable. (Patel, 1978)
ECT AS TRAUMATIC BRAIN INJURY
Both psychiatrist Peter Breggin (Breggin,, 1991, p. 196) and
ECT survivor Marilyn Rice, founder of the Committee for Truth in Psychiatry, have pointed out that minor head injury as a result of trauma often occurs without loss of consciousness, seizures, disorientation, or confusion, and is thus much less traumatic than a series of electroshocks. A better analogy would be that each individual shock is the equivalent of one moderate to severe head injury. The typical ECT patient, then, receives at least ten head injuries in rapid succession.
Proponents as well as opponents of ECT have long recognized it as a form of head injury.
As a neurologist and electroencephalographer, I have seen many patients after ECT, and I have no doubt that ECT produces effects identical to those of a head injury. After multiple sessions of ECT, a patient has symptoms identical 😮 those of a retired, punch-drunk boxer.. .After a few sessions of ECT, the symptoms are those of moderate cerebral contusion, and further enthusiastic use of ECT may result in the patient functioning at a subhuman level. Electroconvulsive therapy in effect may be defined as a controlled type of brain damage produced by electrical means. (Sament, 1983)
What shock does is throw a blanket over people’s problems. It would be no different than if you were troubled about something in your life and you got into a car accident and had a concussion. For a while you wouldn’t worry about what was bothering you because you would be so disoriented. That’s exactly what shock therapy does. But in a few weeks when the shock wears off, your problems come back. (Coleman, quoted in Bielski, 1990)
We don’t have a treatment. What we do is inflict a closed-head injury on people in spiritual crisis.. .closed-head injury! And we have a vast literature on closed-head injury. My colleagues are not eager to have literature on electroshock closed-head injury; but we have it in every other field. And we have considerably more than people are allowing for here today. It is electrical closed-head injury. (Breggin, 1990)
There has never been any debate about the immediate effects of a shock: it produces an acute organic brain syndrome which becomes more pronounced as shocks continue. Harold Sackeim, the ECT establishment’s premier publicist (anyone who has occasion to write about or refer to ECT, from Ann Landers to a medical columnist, is referred by the APA to Dr. Sackeim) states succinctly:
The ECT-induced seizure, like spontaneous generalized seizures in epileptics and most acute brain injury and head trauma, results in
a variable period of disorientation. Patients may not know their names, their ages, etc. When the disorientation is prolonged, it is generally referred to as an organic brain syndrome. (Sackeim, 1986)
This is so expected and routine on ECT wards that hospital staff become inured to making chart notations like “Marked organicity” or “Pt. extremely organic” without thinking anything of it. A nurse who has worked for years on an ECT ward says:
Some people seem to undergo drastic personality changes.
They come in the hospital as organized, thoughtful people who
have a good sense of what their problems are. Weeks later I see
them wandering around the halls, disorganized and dependent. They
become so scrambled they can’t even have a conversation. Then
they leave the hospital in worse shape than they came in.
(Anonymous psychiatric nurse, quoted in Bielski, 1990)
A standard information sheet for ECT patients calls the period
of most acute organic brain syndrome a “convalescence period” and warns patients not to drive, work, or drink for three weeks (New York Hospital-Cornell Medical Center, undated). Coincidentally, four weeks is the maximum time period for which proponents of ECT can claim alleviation of psychiatric symptoms (Opton, 1985), substantiating the statement made by Breggin (1991, pp. 198-99) and throughout the ECT literature that the organic brain syndrome and the “therapeutic” effect are the same phenomenon.
The information sheet states as well that after each shock the patient “may experience transitory confusion similar to that seen in patients emerging from any type of brief anesthesia.” This misleading characterization is belied by two doctors’ published observations of patients after ECT.(Lowenbach and Stainbrook, 1942). The article begins by stating “A generalized convulsion leaves a human being in a state where all that is called the personality has been extinguished.”
A compliance with simple commands like opening and closing the eyes and the appearance of speech usually coincide. The first utterances are usually incomprehensible, but soon it is possible to recognize first the words and then sentences, although they may have to be guessed at rather than directly understood…
If at this time patients were given a written order to write their name, they would not ordinarily follow the command…if then the request was repeated orally, the patient would take the pencil and write his name. At first the patient produces only scribbling and has to be constantly urged to continue. He may even drop back into sleep. But soon the initial of the first name may be clearly discernible…Usually 20 to 30 minutes after a full-fledged convulsion the writing of the name was again normal…
The return of the talking function goes hand in hand with the writing ability and follows similar lines. The muttered and seemingly senseless words and maybe the silent tongue movements are the equivalent of scribbling.. .But as time goes on it “is possible to establish question and answer sessions.. .From now on, the perplexity of the patient arising from his inability to grasp the situation pervades his statements.
He may ask if this is a jail. ..and if he has committed a crime.. The efforts of the patient to re-establish their orientation almost always follow the same line: “Where am I.”… know you” (pointing to the nurse)… to the question “What is my name?” “I do not know”…
The patient’s behavior when asked to perform a task such as to get up from the bed where he lies demonstrates another aspect of the process of recovery.. .he does not act according to voiced intentions. Sometimes urgent repetition of the command would set off the proper movements; in other cases beckoning had to be initiated by pulling the patient from the sitting position or removing one leg from the bed.. .But the patient then frequently stopped doing things and the next series of actions, putting on his shoes, tying the laces, leaving the room, had each time to be expressly commanded, pointed out, or the situation had to be actively forced. This behavior indicates lack of initiative…
It is possible, indeed likely, that a patient and her family could read the entire information sheet mentioned earlier and have
no idea that ECT involves convulsions. The words “convulsion” or “seizure” appear not at all. The sheet states that the patient will have “generalized muscular contractions of a convulsive nature”.
Recently Dr. Max Fink, the country’s best-known shock doctor, offered to let the media interview a patient right after a course of electroshock… for a fee of $40,000 (Breggin, 1991, p. 188).
It is common for persons who have received ECT to report being “in a fog”, without any of the judgment, affect, or initiative of their former selves, for a period of up to one year post-ECT. Afterwards they may have little or no memory of what happened during this period.
I experienced the explosion in my brain. When I woke up from the blessed unconsciousness I did not know who I was, where I was, nor why. I could not process language. I pretended everything because I was afraid. I did not know what a husband was. I did not know anything. My mind was a vacuum. (Faeder, 1986)
I just completed a series of 11 treatments and am in worse shape than when I started. After about 8 treatments I thought I had improved from my depression.. . I continued and my effects worsened. I began experiencing dizziness and my memory loss increased. Now that I had the 11th my memory and thinking abilities are so bad I wake up in the morning empty-headed. I don’t remember many past events in
my life or doing things with the various people in my family. It is hard to think and I don’t enjoy things. I can’t think about anything else. I can’t understand why everyone told me this procedure was so safe. I want my brain back. (Johnson, 1990)
LONG-TERM EFFECTS OF ECT ON COGNITIVE AND SOCIAL FUNCTIONING
The loss of one’s life history–that is, loss of part of the self–is in itself a devastating handicap; but added to this unique quality of ECT head injury are the cognitive deficits associated with other types of traumatic brain injury.
There is not now nearly enough research on the nature of ECT cognitive deficits, or of the impact of these deficits on social roles, employment, self-esteem, identity, and long-term quality of life for survivors. There is only one study which examines how ECT (negatively) affects family dynamics (Warren, 1988). Warren found that ECT survivors “commonly” forgot the very existence of their husbands and children! For example, one woman who had forgotten she had five children was furious when she found out her husband had lied to her, telling her the children belonged to a neighbor. Husbands frequently used their wives’ amnesia as an opportunity to reconstruct marital and family history, to the husbands’ advantage. Clearly, Warren’s study suggests there is much to explore in this area.
There is currently no research which addresses the question of how best to meet the rehabilitative and vocational needs of ECT survivors. One such study, proposed but not implemented in the 1960s, is described in Morgan (1991, pp. 14-19). Its hopeful conclusion that “with enough data, it may some day be possible to deal therapeutically with ECT-damaged patients, perhaps with some radically new approach to psychotherapy, or direct re-education or modification of behavior” has, a generation later, not come to pass. Funding sources such as the National Institute on Disability and Rehabilitation Research must be encouraged to sponsor such research.
The research which exists shows that sensitive psychometric testing always reveals cognitive deficits in ECT survivors. Even given the differences in available testing methods, the nature of these deficits has remained stable over 50 years. Scherer (1951) gave tests of memory function, abstraction, and concept formation to a group of survivors who had received an average of 20 shocks (using brief-pulse or square wave current, the type that is standard today) and to a control group of patients who did not receive ECT. He found that “lack of improvement as between pre- and post-shock results may indicate that shock has injured the patient to the extent that he is unable to achieve his premorbid intellectual potentialities, even though he can shake off the intellectually debilitating effects of the psychosis.” He concluded that “harmful organic results in areas of intellectual function.. .may nullify the partial benefits of the treatment.”
Templer, Ruff and Armstrong (1973) found that performance on
the Bender Gestalt test was significantly worse for persons who had received ECT than for carefully matched controls who had not.
Freeman, Weeks and Kendell (1980) matched a group of 26 ECT survivors with controls on a battery of 19 cognitive tests; all of the survivors were found to be significantly cognitively impaired. The researchers attempted to attribute the impairment to drugs or mental illness, but could not do so. They concluded that “our results are compatible” with the statement that ECT causes permanent mental impairment. The interviews with survivors revealed almost identical deficits:
Forgetful of names, gets easily sidetracked and forgets what he was going to do.
Forgets where she puts things, can’t remember names.
Memory poor and gets confused, to such an extent that he loses jobs.
Difficult to remember messages. Gets mixed up when people tell her things.
Said she was known in her bridge club as the “computer because of her good memory. Now has to write things down, and misplaces keys and jewelry.
Can’t retain things, has to make lists.
Templer and Veleber (1982) found permanent irreversible cognitive deficits in ECT survivors given neuropsychological testing. Taylor, Kuhlengel and Dean (1985) found significant cognitive impairment after only five shocks. “Since cognitive impairment is such an important side effect of bilateral ECT, it seems important to define as carefully as possible which aspects of the treatment are responsible for the deficit,” they concluded. Although they did not prove their hypothesis about the role of an elevation in blood pressure, “It is important to continue to search for the cause or causes of this impairment. If this important side effect could be eliminated or even modified, it could only be a service to patients…” But there is no separating the so-called therapeutic effects from the disabling cognitive effects.
A study-in-progress designed and implemented by members of the National Head Injury Foundation (SUNY Stony Brook, unpublished thesis project) with the same size sample as the Freeman et al study uses a simple self-scoring questionnaire to evaluate cognitive deficits in both the acute and chronic organic brain syndrome stages. The study also elicits information about coping strategies (self-rehabilitation) and about the amount of time it takes to accommodate to deficits.
All respondents in the study indicated they suffered from common symptoms of head injury both during the year after ECT and many,
many years afterwards. The average number of years since ECT for
the respondents was twenty-three. 80% had never heard of cognitive rehabilitation.
Only one-fourth felt they had been able to adjust to or compensate for their deficits by their own efforts. Most indicated they were still struggling with this process. Of those few who felt they had adjusted or compensated, the average number of years to reach this stage was fifteen. When those who had adjusted or compensated were asked how they did it, the most frequently cited answer was “hard work on my own.”
Respondents were asked if they would have liked acknowledgment of or help with their cognitive problems during the year after ECT, and whether they would still like help regardless of how long ago they had been shocked. All but one of the respondents said they would have wanted help in the post-ECT year, and 90% said they still wanted help.
In the last several years with the increased availability of neuropsychological testing, increasing numbers of ECT survivors have taken the initiative where researchers have failed, and have had testing done. In every known case, testing has shown unmistakable brain dysfunction.
Patients’ accounts of cognitive deficits from diverse sources
and across continents remain constant from the 1940s to the 1990s. If these people are imagining their deficits, as some shock doctors like to claim, it is unthinkable that patients over five decades should all imagine exactly the same deficits. One cannot read these accounts without calling to mind the description of minor head injury in the National Head Injury Foundation brochure “The Unseen Injury: Minor Head Trauma”:
Memory problems are common.. .You may be more forgetful of names, where you put things, appointments, etc. It may be harder to learn new information or routines. Your attention may be shorter, you may be easily distracted, or forget things or lose your place when you have to shift back and forth between two things. You may find it harder to concentrate for long periods of time, and become mentally confused, e.g. when reading. You may find it harder to find the right word or express exactly what you are thinking. You may think and respond more slowly, and it may take more effort to do the things you used to do automatically. You may not have the same insights or spontaneous ideas as you did before.. .You may find it more difficult to make plans, get organized, and set and carry out realistic goals…
I have trouble remembering what I did earlier this week. When I talk, my mind wanders. Sometimes I can’t remember the right word to say, or a co-worker’s name, or I forget what I wanted to say. I have been to movies that I can’t remember going to. (Frend, 1990)
I was an organized, methodical person. I knew where everything was. I’m different now. I often can’t find things. I’ve become very scattered and forgetful. (Bennett, quoted in Bielski, 1990)
These words eerily echo those of the ECT survivors described by Dr. M.B. Brody in 1944:
(18 months after 4 shocks) One day three things were missing, the poker, the paper, and something else I cannot remember. I found the poker in the dustbin; I must have put it there without remembering. We never found the paper and I am always very careful of the paper. I want to go and do things and find I have already done it. I have to think about what I am doing so that I know I have done it.. .it is uncanny when you do things and find you cannot remember them.
(One year after 7 shocks) The following are some of the things I forget: the names of people and places. When the title of a book is mentioned I may have a vague idea that I have read it, but cannot remember what it is about. The same applies to films. My family tells me the outlines and I am able to remember other things at the same time.
I forget to post letters and to buy small things, such as mending and toothpaste. I put things away in such safe places that when they are needed it takes hours to find them. It did seem that after the electric treatment there was only the present, and the past had to be recalled a little at a time.
All of Brody’s survivors had incidents of not recognizing familiar people:
(One year after 14 shocks) There are many faces I see that I
know I should know quite a lot about, but only in a few cases can I recall incidents connected with them. I find I can adjust myself to these circumstances by being very careful in making strong denials, as fresh personal incidents constantly crop up.
38 years later, a woman who had 7 shocks wrote:
I was shopping in a department store when a woman came over to me, said hello and asked me how I was. I had no idea who she was or how she knew me.. .1 couldn’t help feeling embarrassed and helpless, as if I were no longer in control of my faculties. This experience was to be the first of many encounters in which I would be unable to recall people’s names and the context in which I knew them. (Heim, 1986)
The deficits in storing and retrieving new information associated with ECT may severely and permanently impair learning ability. And, just as the NHIF brochure states, “Often these problems are not encountered until a person returns to the demands or work, school, or home.” Attempting to go or return to school especially overwhelms and commonly defeats ECT survivors:
When I returned to classes I found I couldn’t remember material I had learned earlier, and that I was totally unable to concentrate… My only choice was to withdraw from university. If there was one area in which I had always excelled, it was in school. I now felt like a complete failure and that I’d never be able to return to university. (Heim, 1986)
Some of the things I tried to study was like trying to read a book written in Russian—no matter how hard I tried I could not get the sense of what the words and diagrams meant. I forced myself to concentrate but it continued to appear gibberish. (Calvert, 1990)
In addition to destruction of entire blocks of pre-ECT memories I have continued to have considerable difficulty in memory with regard to academic pursuits. To date, of embarrassing necessity I have been forced to tape-record all education materials that require memorization. This has included basic classes in accounting and word-processing materials. I was forced to retake accounting in 1983. Now, I am again forced to retake a basic one-semester course in computerized word processing. Currently, I am finding it extremely embarrassing and hurtful when fellow classmates (however innocently) refer to my struggles in grasping my study materials, thusly: “You are an AIR-BRAIN!” How can I explain that my struggles are due to ECT? (Winter, 1988)
I started school full time and found I did much better than
I could imagine remembering information on field placement and classes—but I couldn’t understand what I read or put ideas together—analyze, draw conclusions, make comparisons. It was a shock. I was at last taking courses on theory.. .and ideas just didn’t remain with me. I finally accepted the fact that it was just going to be too much torture for me to continue so I quit my field placement, two courses, and attended only one discussion course until the end of the semester when I withdrew. (Maccabee, 1989)
It is often the case that the ECT survivor is disabled from
her or his previous work. Whether or not a survivor returns to work depends on the type of work previously done and the demands it makes on intellectual functioning. The statistics on employment of ECT survivors would seem to be just as dismal as statistics on employment of head-injured persons in general. In the SUNY survey, two-thirds of the respondents were unemployed. Most indicated that they had been employed prior to ECT and unemployed since. One elaborated:
At the age of 23 my life was changed because after ECT I experienced disabling difficulty understanding, recalling, organizing and applying new information and also problems with distractibility and concentration. I had ECT while I was teaching and because my level of functioning had changed so dramatically I quit my job. My abilities have never returned to pre-ECT quality. Pre-ECT I’d been able to function in a totally individualized sixth-grade classroom where I designed and wrote much of the curriculum myself. Due to the problems I had after ECT I never returned to teaching. (Maccabee, 1990)
A nurse writes of a friend at one year post-ECT:
A friend of mine had 12 ECT treatments in September-October 1989. As a result, he has retrograde and anterograde amnesia and is unable to perform his work as a master plumber, cannot remember his childhood and cannot remember how to get around the city where he has lived all his life. You can imagine his anger and frustration.
The psychiatrists have been insisting that his problem is not ECT-related but is a side effect of his depression. I have yet
to see a severely depressed person fight so hard to regain their ability to think clearly and be able to go back to work again. (Gordon, 1990)
She has stated clearly the impossible situation of ECT survivors. There can be no help for them until there is recognition of the traumatic brain injury they have sustained and its disabling effects.
ECT survivors have the same needs for understanding, support,
and rehabilitation as other head injury survivors. If anything, it could be said that their needs may be greater, since the massive retrograde amnesia unique to ECT can precipitate an even greater crisis of identity than occurs with other head injuries.
Neuropsychologist Thomas Kay, in his paper Minor Head Injury: An Introduction for Professionals, identifies four necessary elements in successful treatment of head injury: identification of the problem, family/social support, neuropsychological rehabilitation, and accommodation; Identification of the problem, he says, is the most crucial element since it must precede the others. Tragically at this time it is the rule rather than the exception that for ECT survivors none of these elements come into play.
This is not to say that ECT survivors never successfully build a new self and a new life. Many courageous and hardworking survivors have—but they have until now always had to do it alone, without any help, and it has taken a sizable chunk of their lifetimes to do it.
As time goes on, I have made a great effort to regain the maximum use of my brain by forcing it to concentrate and to try to remember what I hear and read. It has been a struggle… I feel like I have been able to maximize the undamaged parts of my brain.. .I still mourn the loss of a life that I didn’t have. (Calvert, 1990)
Survivors are beginning to share their hard-won strategies with other survivors, professionals who would help them would do well to listen to those whose daily business, even decades after ECT, is surviving.
I tried a course in general psychology, which I’d had As on in college. I quickly discovered that I couldn’t remember anything if I just read the text.. .even if I read it several times (like four or five). So I programmed my materials by writing out questions for each sentence and writing the answers on the back of the cards. I then quizzed myself until the material was memorized. I have all the cards from two courses. What a stack… I memorized the book, practically… and worked five to six hours a day on weekends and three or four during the work week… It was quite different from when I was in college. Then, I read things and remembered them. (Maccabee, 1989)
She also describes her own cognitive retraining exercise:
The main exercise consists primarily of counting from 1-10 while visualizing, as steadily as possible, some image (object, person, etc.) I thought of this exercise because I wanted to see if I could practice using the right and left sides of my brain. Since I began this I think I read that that isn’t what I was doing. But, it seemed to work. When I first started the exercise I could hardly hold an image in mind, much less count at the same time. But I have become quite good at it and I relate it to an improved ability to deal with distractions and interruptions.
Similar exercises, in fact, are practiced in formal cognitive rehabilitation programs.
Often self-rehabilitation is a desperate, trial-and-error process that takes many lonely, frustrating years. A woman describes how she taught herself to read again after ECT, at age 50:
I could process language only with difficulty. I knew the words, how they sounded, but I had no comprehension.
I did not literally start at “scratch”, as a preschooler, because I had some memory, some understanding of letters and sounds—words—but I had no comprehension.
I used TV for newscasts, the same item in the newspaper, and tried to match these together to make sense. Only one item, one line. Try to write it in a sentence. Over and over, again and again.
After about six months (this was daily for hours), I tried Reader’s Digest. It took me a very long time to conquer this–no pictures, new concepts, no voice telling me the news item. Extremely frustrating, hard, hard, hard. Then magazine articles. I did it! I went on to “For Whom the Bell Tolls” because I vaguely remembered I had read it in college and had seen the movie. But it had many difficult words and my vocabulary was not yet at the college level, so I probably spent two years on it. It was 1975 when I felt I had reached the college level in reading.(I started in 1970.) (Faeder, 1986)
One survivor for whom the slow process of rehabilitation has taken two decades expresses the hope of many others that the process might be made easier for those being shocked in the ’90s:
I might never have thought that rehabilitation was something that ECT patients could benefit from until I was examined in 1987, at my request, at a local psychogeriatric center because I worried that perhaps I had Alzheimer’s disease because my intellectual functioning still caused me problems. During the psychological testing, which extended over a period of two months due to scheduling problems, I observed that my concentration improved and I functioned better at work. I reasoned that the “time-encapsulated” efforts to concentrate and focus my attention carried over. The tests were not meant to be rehabilitative, but they somewhat served this purpose—and convinced me that sequential retraining or practicing of cognitive skills could be beneficial to ECT patients. Of course, this was almost 20 years after ECT…
I hold a responsible, though poorly paying, job as an administrative assistant for a professional organization—performing at tasks that I never thought I would be able to do again. I might have been able to do them earlier if I’d had rehabilitation training. At this time I am concerned about the plight of ECT patients who are still struggling. While these ECT “complainers” are at risk of becoming increasingly depressed—and perhaps suicidal—because
of their disabilities, professionals continue to argue about whether or not ECT causes brain damage using insufficient and in some cases outdated data.
I wish that some brain trauma research and rehabilitation
center would accept a few ECT patients and at least see if practicing or “reprogramming” of cognitive skills could result
in improved performance. (Maccabee, 1990)
In 1990, three ECT survivors were treated in the cognitive rehabilitation program of a New York City hospital. Slowly, attitudes and preconceived ideas are changing.
ECT IN THE ’90s
ECT has gone in and out of fashion during its 53-year history; now on the wane, now making a comeback. Whatever happens in this decade (ironically designated by President Bush the Decade of the Brain), ECT survivors cannot afford to wait until a favorable political climate allows them the help they need. They need it now.
There are some hopeful signs. The 1980s saw an unprecedented boom in ECT (medical malpractice) lawsuits citing brain damage and memory loss, to the point where settlements are steadily increasing for those with the stamina and resources to pursue legal redress. The ECT machine remains in Class III at the FDA. ECT survivors are joining head injury support groups and organizations in record numbers.
State legislatures are toughening ECT laws, and city councils
are taking courageous stands against ECT. On February 21, 1991, after well-publicized hearings at which survivors and professionals testified, the Board of supervisors of the City of San Francisco adopted a resolution opposing the use of ECT. A bill pending in the New York State Assembly (AB6455) would require the state to keep statistics on how much ECT is done, but its accompanying strongly worded memorandum opens the door for stricter measures in the future. In July 1991 the Madison, Wisconsin city council proposed a resolution to recommend a ban on the use of ECT. (Shock was banned in Berkeley, California in 1982 until the local psychiatrists’ organization overturned the ban on a technicality.) The council’s Public Health Committee unanimously agreed that accurate information about the effects of ECT on memory must be presented to patients, and they are writing a resolution to contain full and accurate information. And in August 1991 ECT survivors testified, and a manuscript containing accounts of memory loss by 100 survivors was presented, at hearings in Austin, Texas, before the Texas Department of Mental Health. Subsequently the Department’s regulations were revised to contain a stronger warning about permanent mental dysfunction.
It is difficult, even in so many pages, to paint a full picture of the suffering of ECT survivors and the devastation experienced not only by the survivors but by their families and friends. And so the last words, chosen because they echo the words of so many others over the years, belong to a former nurse estranged from her husband and living on Social Security Disability, fighting in the legal system for redress and working with an advocacy group.
What they took from me was my “self”. When they can put a dollar value on theft of self and theft of a mother I would like
to know what the figure is. Had they just killed me instantly the kids would at least have had the memory of their mother as she
had been most of their lives. I feel it has been more cruel, to
my children as well as myself, to allow what they have left to breathe, walk, and talk.. .now the memory my kids will have is of this “someone else” who looks (but not really) like their mother. I haven’t been able to live with this “someone else” and the life I’ve lived for the past two years has not been a life by any stretch of the imagination. It has been a hell in the truest sense of the word.
I want my words said, even if they fall on deaf ears. It’s not likely, but perhaps when they are said, someone may hear them and at least try to prevent this from happening again. (Cody, 1985)
Avery, D. and Winokur, G. (1976). Mortality in depressed patients treated with electroconvulsive therapy and antidepressants. Archives of General Psychiatry, 33, 1029-1037.
Bennett, Fancher. Quoted in Bielski (1990).
Bielski, Vince (1990). Electroshock’s Quiet Comeback. The San Francisco Bay Guardian, April 18, 1990.
Breggin, Peter (1985). Neuropathology and Cognitive Dysfunction from ECT. Paper with accompanying bibliography presented at the National Institutes of Health Consensus Development Conference on ECT, Bethesda, MD., June 10.
Breggin, Peter (1990). Testimony before the Board of Supervisors of the City of San Francisco, November 27.
Breggin, Peter (1991). Toxic Psychiatry. New York: St. Martins Press.
Brody, M.B. (1944). Prolonged memory deficits following electrotherapy. Journal of Mental Science, 90 (July), 777-779.
Calloway, S.P., Dolan, R.J., Jacoby, R.J., Levy, R.(1981). ECT and cerebral atrophy: a computed tomographic study. Acta Psychiatric Scandinavia, 64, 442-445.
Calvert, Nancy (1990). Letter of August 1.
Cody, Barbara (1985). Journal entry, July 5.
Coleman, Lee. Quoted in Bielski (1990).
Details of Electrotherapy (undated). New York Hospital/Cornell Medical Center.
Dolan, R.J., Calloway, S.P., Thacker, P.F., Mann, A.H.(1986). The cerebral cortical appearance in depressed subjects. Psychological Medicine,16, 775-779.
Faeder, Marjorie (1986). Letter of February 12.
Fink, Max (1978). Efficacy and safety of induced seizures (EST) in man. Comprehensive Psychiatry, 19 (January/February), 1-18.
Freeman, C.P.L., and Kendell, R.E. (1980). ECT I: Patients’ experiences and attitudes. British Journal of Psychiatry, 137, 8-16.
Freeman, C.P.L., Weeks, D., Kendell, R.E. (1980). ECT II: Patients who complain. British Journal of Psychiatry, 137, 17-25.
Friedberg, John. Shock Treatment II: Resistance in the 70s. In Morgan (1991) pp. 27-37.
Frend, Lucinda (1990). Letter of August 4.
Fromm-Auch, D. (1982). Comparison of unilateral and bilateral ECT: evidence for selective memory impairment. British Journal of Psychiatry, 141, 608-613.
Gordon, Carol (1990). Letter of December 2.
Hartelius, Hans (1952). Cerebral changes following electrically induced convulsions. Acta Psychiatrica et Neurologica Scandinavica, Supplement 77.
Heim, Sharon (1986). Unpublished manuscript.
Janis, Irving (1950). Psychologic effects of electric convulsive treatments (I. Post-treatment amnesias). Journal of Nervous and Mental Disease, III, 359-381.
Johnson, Mary (1990). Letter of December 17.
Lowenbach, H. and Stainbrook, E.J. (1942). Observations of mental patients after electroshock. American Journal of Psychiatry, 98, 828-833.
Maccabee, Pam (1989). Letter of May 11.
Maccabee, Pam (1990). Letter to Rusk Institute of Rehabilitation Medicine, February 27.
Morgan, Robert, ed. (1991). Electroshock: The Case Against. Toronto: IPI Publishing Ltd.
Opton, Edward (1985). Letter to the members of the panel, NIH Consensus Development Conference on Electroconvulsive Therapy, June 4.
Patel, Jeanne (1978). Affidavit of July 20.
Rice, Marilyn (1975). Personal communication with Irving Janis, Ph.D., May 29.
Sackeim, H.A. (l986). Acute cognitive side effects of ECT. Psychopharmacology Bulletin, 22, 482-484.
Sament, Sidney (1983). Letter. Clinical Psychiatry News, March, p. 11.
Scherer, Isidore (1951). The effect of brief stimulus electroconvulsive therapy upon psychological test performances. Journal of Consulting Psychology, 15, 430-435.
Squire, Larry (1973). A thirty year retrograde amnesia following electroconvulsive therapy in depressed patients. Presented at the third annual meeting of the Society for Neuroscience, San Diego, CA.
Squire, Larry (1974). Amnesia for remote events following electroconvulsive therapy. Behavioral Biology, 12(1), 119-125.
Squire, Larry and Slater, Pamela (1983). Electroconvulsive therapy and complaints of memory dysfunction: a prospective three-year follow-up study. British Journal of Psychiatry, 142, 1-8.
SUNY (State University of New York) at Stony Brook (1990- ) Dept. of Social Work. Unpublished masters’ thesis project.
Taylor, John, Tompkins, Rachel, Demers, Renee, Anderson, Dale (1982). Electroconvulsive therapy and memory dysfunction: is there evidence for prolonged deficits? Biological Psychiatry, 17 (October), 1169-1189.
Taylor, John, Kuhlengel, Barbara, and Dean, Raymond (1985). ECT, blood pressure changes and neuropsychological deficit. British Journal of Psychiatry, 147, 36-38.
Templer, D.I., Veleber, D.M. (1982). Can ECT permanently harm the brain? Clinical Neuropsychology, 4, 61-66.
Templer, D.I., Ruff, C., Armstrong, G. (1973). Cognitive functioning and degree in psychosis in schizophrenics given many electroconvulsive treatments. British Journal of Psychiatry, 123, 441-443.
Warren, Carol A.B. (1988). Electroconvulsive therapy, the family, and the self. Research in the Sociology of Health Care, 7, 283-300.
Weinberger, D., Torrey, E.F., Neophytides, A., Wyatt, R.J. (1979a). Lateral cerebral ventricular enlargement in chronic schizophrenia. Archives of General Psychiatry, 36, 735-739.
Weinberger, D., Torrey, E.F., Neopyhtides, A., Wyatt, R.J. (1979b). Structural abnormalities in the cerebral cortex of chronic schizophrenic patients. Archives of General Psychiatry, 36, 935-939.
Winter, Felicia McCarty (1988). Letter to the Food and Drug Administration, May 23.
For copyright information, contact Linda Andre, (212) NO-JOLTS.
In the next few days I will be writing and having a guest post from someone but today I want to write about a frustration that has got my goat bigtime. It has to do with the letter that I wrote to Kathryn Power, “bigwig” at SAMHSA or, for those of you who wonder what the letters stand for, the Substance Abuse Mental Health Services Administration, for Region One, which covers the New England region.
Apparently she took my letter very seriously, which I did not know. This may have been because I never received her reply, if she sent one, having given her the wrong return address ( I did not know the proper one where I was to be living at MRR in Brattleboro.) Or it may be because she failed to copy me on any of the emails she sent to any of the parties she subsequently wrote to, both in the Federal government and at the state level. Whatever the case may be, apparently she wrote to several officials, including the Connecticut Department of Mental Health and Addiction Services and possibly the Department of Protection and Advocacy ( which dumped me completely after assuring Susan Stefan, Atty at law known for her work against seclusion and restraints, that they were working closely with me). I never knew this, nor have I learned the outcome of these contacts. I only just today received faxed records of these initial emails.
So I know that Ms Power contacted Mirian Dephin-Rittmon who is the new commissioner of mental health in Connecticut. I would like to think that Ms Dephin-Rittmon responded somehow, but I have no such evidence, and if the response from Patricia Rehmer, her predecessor, is any hint of what I could expect, then the answer will b: NOTHING, nada, zilch, a big fat zero. And why is that? Because in Connecticut the Commissioner of Mental Health and Addiction Services, while she may nominally be serving all citizens with mental health problems, actually has no such mandate. Not at all. She serves in fact ONLY those who are hospitalized in STATE facilities, which are extremely limited, and how lucky for her, and in fact for them, because they get protections that none of the rest of us ever got.
It was not that we were not indigent and also on Medicare and Medicaid, and also on SSDI and possibly on SSI. Most of the patients at general hospital psychiatric units in Connecticut, if they are repeat offenders of any sort, are usually on assistance of this kind. How could they not be? Most have been “disabilified” – that is, disabled and made into disabled-thinking persons — by medications if not by illness and by the systematic undermining of their personhood by the State. (I know, that is an argument that needs to be enlarged, but elsewhere, elsewhere…) But they are not in State facilities, decidedly not. Why is that? Because courtesy of the State Government, most state facilities, especially for adults, have been closed down or turned into prisons.
So if you need a hospital, you must go to a general hospital psychiatric unit where the Commissioner of Mental Health and the Department of Mental Health actually have no jurisdiction or sway. Literally the only way you can get into the safety zone of a State Hospital, that is to say, into the ONLY state hospital that now exists in Connecticut, Connecticut Valley Hospital, is by being thought such a bother to the nursing staff at a general hospital that they want to get rid of you, and they send you off to CVH for “longer term treatment.”
But this, mind you, is a punishment, it is not something that they do out of caring or attempts to render better treatment. Not at all, and I should know. After all, I have been threatened with such “treatment” several times, and the last time was when I was at New Britain Hospital in 2014. There, because I was labeled “a borderline” and therefore dismissed as manipulative and dramatic. Every word I said was disregarded…Nothing I could say was taken seriously. And every act was regarded as willful and deliberate. So they could justify punishment and torture as my just desserts, and they tortured me by dragging me to the seclusion cell for swearing under my breath, and four-pointed me for hitting my head lightly against a wall, after they stripped me naked in the cell and I begged for a blanket they pointblank refused me ….
You see the picture? I was “so impossible to deal with” that they were going to “send me away” as punishment and in revenge.
We all knew this, we all knew that CVH was the last stop, their last resort and final punishment for those of us so obstreperous as to object to their outrageous brutalities and keep objecting rather than bow our heads and submit. In the end, because I was so determined to get out, to escape to Vermont, I did, I gave in and gave up and submitted, and it worked. I played their game and got out of their abysmal unit. I submitted, for which I cannot forgive myself…
My point here though is that it is only when a patient has been deemed such a pain in the ass that she is sent away, sent down the river to CVH that Pat Rehmer or Miriam Delphin-Rittmon ever comes into the matter. Before then, they are not interested or concerned with what happens or happened for that matter. They do not give a damn. Not that they don’t care about torturous seclusion cells or four-point restraints in general, it just ain’t their juris-my-dicktion to care about what happens to patients in city hospitals. Sorry, but it ain’t. So they don’t pay attention. They just can’t and so they don’t. It is, as my friend Josephine says, always as if newly minting the expression, what it is!
That said, there is Capitol Region and the Connecticut Mental Health Center too, but they serve exclusively the uninsured, so that of course was not for me, who have been covered by Medicare and Medicaid for years. So lucky me, I could luckily go to New Britain General Hospital and be tortured by the likes of Michael E Balkunas, with utter impunity because DMHAS has no oversight or jurisdiction over these psychiatric units, NONE WHATSOEVER.
Did Kathryn Power not understand this when she wrote to Miss Miriam? Apparently not. She might have believed that the Commissioner of Mental Health in Connecticut could or would do something to help a mentally ill elderly citizen who had been tortured in a psychiatric unit in Connecticut. Foolish Kathryn! And then maybe she thought that Protection and Advocacy could be called upon to help me as well? Oh, what a sad, sad day for Ms Power when she learned, or did she, that P and A in Connecticut has no interest in helping anyone? Did she really think I had not applied myself to anyone for help before I went to her? Where does she think I have been for the last year? Doing nothing? I have tried and tried and tried and tried. But no one answers and no one does a thing!
Oh, I could laugh if I were not so broken and so sick at heart. But I will not let the fuckers win because then the torture will just continue unabated. No, I will continue to nip and snap and irritate Mikey B. and the nurses at W-1 at HOCC in New Britain until they themselves cry “uncle” and change their ways. I will not stop until they are stopped in their brutality and stop hurting people. I will never cease this campaign until I know that patients at W-1 are safe from harm or W-1 is closed down and I am certain that Dr. Balkunas has lost his license for good.
But the worst thing was that Ms Power finally sent the letter to the Office of Civil Rights (OCR) in Boston which was directed to open a Complaint! Yes! But just whne I had hope for this, bizarrely enough, they closed it on the basis, get this, that my complaint “alleges abuse at MANCHESTER MEMORIAL HOSPITAL IN APRIL OF 2008″ — Say what?????? Huh? !!!!! My letter does no such thing. It never mentions Manchester Hospital at all. Why would it? I had never even been there in 2008 or before 2009. And the first time I was EVER at MMH was in October of 2009, so WTF??? THis is so bizarre and so outrageous and so disgraceful a reason to deny my complaint a basis to go forward that I have had it…To say in the first paragraph that I allege torture at New Britain Hospital in 2014 and then in the fourth or fifth paragraph to somehow segue in this extreme non-sequitor to alleging something in Manchester Hospital in 2008, when I was NEVER THERE…just gets me down completely, because you know, no one in the chain of information who saw this and they did, NO ONE CALLED THE OCR on this or told them to get their act together and fix their mistake,.no they essentially let it go and made me suck it up…
FUCK THE THE ASSHOLES I cannot take this shit any longer. FUCK THE WORLD I WANT TO GET OFF! I have had it. I’ve had it, No one gives a damn about anything…I give up.
Dear Kathryn Power,
In May 2014, mute and psychotic, I was taken to Hospital of Central Connecticut in New Britain’s Emergency Department by ambulance. My visiting nurse, in concurrence with my outside psychiatrist, had called 911, concerned about my safety and my ability to function because I had not spoken for weeks and was not taking adequate care of myself. I was not agitated, instead, I was unable to speak and slowed down rather than anything else.
More than a year has passed since then, so instead of relying on memory, I will paste here what I wrote shortly after my subsequent hospital stay, with edits for clarity and concision. Some has been taken from the secret journal I kept in that hospital, a journal which I was forced to scribble on pieces of torn-up brown paper waste basket liners, surreptitiously mailing them to a friend immediately the moment I finished writing. I had to do it this way because a housekeeping staff member had told me that nurses instructed her to throw out everything in my room, including first class mail, each time they found a reason to seclude me, which was frequently (nearly every day in fact, and sometimes more than once a day.)
More on this follows.
But first let me tell you what happened in the Emergency Department. I came in by ambulance. I did not want to but was given “either the easy way or the hard way” choice by the police who came with the 911 call. I did not resist or fight, nor was I restrained in any way in the ambulance. As I said, I was mute, which had deeply concerned my Visiting Nurse, and mostly passive. I merely handed the EMTs my medication sheet and my detailed but clear Psychiatric Advanced Directive. This is critical as on page one and two are clearly typed vitally important information about my trauma history and how to deal with me in a crisis, including provisions for when I might be mute.
The first page of the ED chart states that availability of my Advance Directive is “unknown.” Nevertheless, the ED triage note states, with apparent disapproval and resentment, that “pt presents with detailed instructions on how to provide her care..” i.e. the psychiatric advance directive. This seems to have been immediately disregarded, as insulting to their knowledge…
ED Nurses note: “Seneilya… RN Assumed care of patient. Patient arrived via EMS after VNA called for increased anxiety. EMS reports patient refused to speak but wrote down, “Sunglasses block hate. I don’t want to hurt anybody.” [*sun-glasses are “hater-blockers” yes, but they block other people’s hatred. The RN never got my point and I was mute with no way to communicate the distinction…] “On admissions patient refused to speak to this RN. Patient pointed at her head when asked why she was here. Patient nodded “yes” when asked if she was hearing voices but refused to answer other questions. …(next sentence indecipherable)
Report given to Beth RN who assumed care of patient…”
At 15:19 Beth RN wrote the following:
“Pt not responding verbally to this nurse, this nurse looked through her art book and placed it back on her stretcher then pt picked it up and slammed it down on the stretcher and pointed her finger at the book. Unable to get pt to communicate. Pt pulled sheets over her head. Pt still in street clothes, will pt [sic] as is until examined by MD.”
What is not said here is that this nurse, “Beth” never asked me whether she might look at my art book. She just took it. She refused to allow me any other means of communication, except speech. When I was unable to do this, she did not inquire as to why I did not speak nor apparently did she attempt to make inquiries from anyone else why this was so. If she had provided me with means to write I might have been able to tell her what had happened in the previous two weeks at home. Instead, she appeared to become angry and from then on refused to permit me any mode of communication other than the one she preferred.
I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so.
Beth RN records what happened after a meal was given to me that I did not eat (it was not vegetarian).
“Pt ate nothing,” Beth RN reports, “[but she] wrote messages with ketchup and French fries, [saying] ‘I need a crayon.” [***] This nurse told pt she needs to speak because she can, pt threw everything on her table on the floor, food juice, etc. Pt then picked up fries from the floor and started eating them and gathered more and putting them in the bed with her and kicked the other food away in the OBS area.”
“Pt went to the BR, seen coming from the BR with paper towels then pt observed writing with her finger on a paper towel with something, first thinking it must be ketchup, then maybe jelly, then this nurse got up to check and pt found to be writing with her own feces, some paper was able to be removed, other paper with large piece of BM pt threw at this nurse. Pt moved to room 42 [seclusion] then pt got OOB and snuck around corner and tried to attack this nurse [?***] from behind, [public safety was able to get to pt first,***] pt to be medicated and restrained. Pt licking feces off fingers, would not let nurse wash her hands…”
In point of fact, fact I never attacked or even tried to attack the nurse as you will see.
And the nurse knows this, because she backtracks in the chart and says so, here” the Public Security was “able to get to pt first” so she knows full well that I never ‘”tried to attack her” and they knew they had no right to restrain me. The chart alone makes it clear that I never did a thing. She would not have phrased it that way if I had attacked her, or even attempted to. No, if I had attacked her, she would said so. In those terms. Not in uncertain, vague terms. She never would have said what amounts to, “Oops, patient attacked me, but the guards got to her first before she, um, tried to attack me, so really she just wanted to attack me, I think, but never really did, so…um, she never did even really try to attack me, I just assume she wanted to, but like, you know, I can’t really be sure, like, that she wanted to attack me she just looked really, really mean and she wasn’t saying a word, so I betcha she did, and I am really, really glad those guards stopped her from trying to attack me just in case she, like, might have wanted to try to attack me, you know?”
Now I want to tell my side of this story because they invented this story out of whole cloth. Yes, parts of it are true, but the chart puts them out of order and not the way Beth related it. This is important because the way she wrote it makes me seem like I spontaneously leapt off the gurney and attacked her out of the blue, which never happened. However, I was also privy to a conversation by the so called Public Safety officers, AKA Guards, who in front of me, in fact while they were holding me down (I was mute, mind you, so remember that they thought I was also deaf, or forgot I was not) decided to create this story in order to justify 4-pointing me, because they simply wanted an excuse to do so.
What really happened was that due to my need to communicate, I wrote my needs with ketchup on the paper box the meal came in. Then that too was taken away from me, and Beth came up to me, and instead of speaking to me, handed me a NOTE she had written (the irony of this is beyond belief!) saying, “I will not speak to you or give you anything to write with until you start speaking to me.” At this point, I was livid and also so desperate to write I had no choice but to use whatever I had at hand.
So, yes, I did do as she wrote in the chart: I went to the bathroom and had a bowel movement and took some feces back to my cubicle and I tried to write journal entries about what was happening to me on paper towels with my own fecal material. And no, this did not go over very well with Beth or anyone else. But I never attacked Beth or even tried to assault her. Instead, she snuck up on me and snatched my art book out from under me and raced away with it, holding it up in triumph as she did.
I was so furious that without even a thought as to possible consequences, I raced behind her intending only to grab my book back. That was all. I never assaulted her, I never so much as touched her. I wanted only to only grab the book back that she had not asked to take from me. Period. As she suggests when she says, “public safety was able to get to patient first.” Well, in fact I had never any intentions of “attacking Beth or anyone else and the guards knew it. But the fact is, I never touched or attacked anyone, they grabbed me and attacked me!
That was the point when they dragged me to “Room 42″. The two guards, holding me down, decided they wanted an excuse to four-point me, and though one of them cautioned that they really had no reason to do so, the other one told him not to worry, “we’ll find a reason.” And as I learned shortly thereafter from accusations of my having assaulted a nurse made by Dr. Michael E. Balkunas, they did so.
But just because an accusation is made doesn’t make it factual or true, as we all know, and just because Michael E Balkunas accused me of lying about it, and again when I later informed him about them stripping me and leaving me naked in the hospital seclusion room doesn’t mean he was correct either. He never asked me what did happen. He never tried to find out the real events of that evening, he simply designated me as manipulative and “volitional” — a “borderline” — essentially a prime-time liar. He had already conceived an intense antipathy towards me, so by the time he finally came by to see me on the W-1 Psych Unit the next day, he had made the decision not to let me communicate by writing. Therefore, his intent right from the start was not to let me tell him what was going on. He decided, from the very first moments, not only not to recognize the desperation and extreme frustration this induced, but to see only violence and willfulness in me. His solution? Punishment and torture. Period.
But I am getting ahead of myself. Michael E. Balkunas, MD, the director of New Britain Hospital’s W-1, claimed to have been there when the ED incident I describe happened, when the guards said that I just shot up off the gurney and spontaneously attacked Beth, the RN, from behind. But the record does not bear this out. In fact, he never saw me at all on the evening of May 12: all the orders were written by other physicians. Dr Balkunas’s name is not even mentioned until the afternoon of May 13 when it states only that he was at my bedside to evaluate me. Even then, from what I recall, I was so sedated after multiple forced medications, use of four-point restraints and seclusions, that I was unable to answer a single question. Since I could not speak, given the fact that Balkunas too refused me any writing implement the interview was as unproductive as could be imagined possible.
I was to be admitted to W-1 on the basis of his judgments from that single brief evaluation, from which he drew the diagnosis that in addition to schizophrenia, I had a probable “borderline personality disorder.” (He spoke to no one in my family nor my longtime nurse or doctor nor my friends…and he did not even hear from me, yet he drew this snap conclusion on what basis???? And yet it hideously affected my treatment at the hospital)
How could he possibly diagnose a personality disorder, seeing me in such traumatic circumstances and for a few minutes only? In point of fact, what likely happened was that he took a disliking to me, and diagnosed me with something that in his mind justified his later egregious treatment of me, and in particular justified his disallowing me to write instead of speak. I cannot otherwise explain his behavior. Nor can I understand his astonishment at my response when I did not react well to these punitive ministrations. Why did he think I would respond positively? Why did he think that coercion would be beneficial? Did he truly think his “treatment” would be restorative? What I think happened is that he decided he did not like me, right from the moment he laid eyes on me — I may even have been naked in restraints, who knows?– and so he opted, as many men do, for savage abuse and punishment.
But there are policies at W-1 that hurt everyone, not just me.
“I want to explain what “deserving” seclusion or restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut on Grand Street in New Britain) means in 2014. I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion or four-point restraints when absolutely essential, when a patient is out of control and extremely violent, and cannot be controlled in any other way.” Trust me, I know. They have said this sort of thing to me in each and every single Connecticut Hospital I have ever stayed in, except for the “old” Hartford Hospital’s CB-2 psychiatric unit in the 1980s-early 1990s, when Sharon Hinton APRN was the head nurse. I do not recall ever hearing about any seclusion and four-point restraint policy. I know for a fact they had NO seclusion cell, and while I spent many admissions starting out in their “secure unit” what we got there was simply more attention, and more care, not more abusive control.
But what you need to know is that they are NOT talking about some 400-pound man hopped up on PCP, waving a machete. For one thing, that person, I believe is largely mythical, or if real now largely confined to correctional and law enforcement settings. The person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I. I am the rule…The person they secluded or restrained almost without exception at hospitals like New Britain and Manchester and Middlesex and the Institute of Living was none other than me.
So let me tell you about me. I will turn 63 years of age in November. I am 5 feet, 3 inches tall, and until I moved to Vermont, I weighed, maybe 108 pounds on a good day, Furthermore, I have been consistently described as “poorly muscled.” Not only has my right shoulder been recently injured by staff encounters at New Britain’s hospital, but I before I was hospitalized at HOCC I was unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the NBGH/HOCC nurses/security guards knew (they stated it out loud) and used to their advantage when subduing me.
I also want you to know that I am a decades-long vegetarian on the principle of non-violence — and have always believed in non-violence to people as well as to animals. I have opposed the death penalty since I was a nine-year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted criminals as we do. Yet in many Connecticut hospitals since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either holding me down by brute force, 2 people to each limb and one to my torso (this was at the only 2 hospitals that did not actually resort to mechanical four-point restraints– compared to the half dozen others that did), they routinely injected me with two to three drugs as chemical restraints (really punishment drugs, as I frequently called them, without anyone correcting my perception) whether they were required or not.
I am the rule, not the exception, I am this supposedly “extremely violent mental patient” who is so O.O.C that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical person they claim they absolutely must have the right to resort to the use of violence, for their own safety and mine.
Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, on W-1 this is what happened.
Michael E Balkunas MD, head of W-1, wrote that “while in patient would often scream.” Yet he states with apparent resentment that I had brought items with me “such as a large advanced directive.” The nursing notes repeat this as if this is a bad thing, and then they proceed to disregard every item on it. Not only that but after Balkunas accuses me of behaving with “volition” (whatever this is meant to prove) he never actually adduce any further facts or observations to back up what he means, except that I brought with me the large psychiatric advance directive and a published book of art work I had done.
This book of my art, by the way, was deliberately kept from me the entire time I was on the unit, because, I was told it would be extremely harmful for the other patients to see it. The nurses repeatedly reinforced this message: any glimpse of my art would hurt them. This was emphasized to me: I should feel guilty not only for having brought the book with me, but for having drawn the pictures at all. The RNs seemed to enjoy my feeling bad about this….
Balkunas further claims in the chart that he repeatedly “asked if patient would like to speak to him, please,” but what he fails to note is that he refused to permit me any possible mode of communication. He also peremptorily walked out on me when I could not utter a word. He notes that, yes, I threw my bed-clothes at him, but fails to mention that he would not acknowledge my gestures or try to figure out what I wanted to say. Instead, he stood up in disgust and turned on his heels and left.
I admit that having already been secluded, 4-point-restrained and forcibly sedated in the ED, and then called a liar by the doctor who was supposed to care for me, I was very upset at being unable to make him stay, to make him listen or attend to me. So I did the only thing I could do to make noise of any sort. I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder.
This was not intentional. I scarcely recall doing it, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ED, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal.
Enraged, his face beet-red, he bellowed at the nurses to order guards to take me immediately to the seclusion cell.
“Seclusion! Seclusion! Restraints! Restraints!” he screamed. Before I could do anything or even consent to walk there, I was bodily dragged down the hall by my injured shoulder to one of the most horrifying seclusion cells I have ever seen. There were two cells, actually, each lockable from the outside, completely barren and cold except for a concrete slab of a bench set into the wall, with a plastic mattress on it. Nothing else. No commode, no bedpan, nothing but two cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door across the other room, so I was thoroughly alone and soundproofed from the rest of the unit, and then turned their backs and walked away.
I panicked immediately. I urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Nada. Zilch. Not a word. I did not even understand at that time that there was an intercom somewhere that they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I knew, yes, I knew, what would happen, I knew this because it was SOP. It was what always happened to me in Connecticut’s torture-chamber hospitals. But I was freezing in there with the A/C on full bore and at 108 pounds and a history of frostbite I could not tolerate being cold. Furthermore, with neither a watch nor any clock on the wall, I had no inkling as to how long they would keep me there. It might be two hours or twenty, or it might be three days. All I knew was that I could not tolerate the isolation, one, and two, I could not survive the freezing temperature.
So I took the flimsy johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it, as if to strangle myself. This was a futile endeavor of course, because I couldn’t keep pulling on it without eventually letting go and then I’d breathe again. I didn’t want to die. I just wanted it to look outwardly as if I were strangling myself so someone would come in to check on me. Then finally I thought I would be able to explain that I was freezing cold and just please please please would someone give me a blanket?
Well, would that anyone were so reasonable! But no such luck…
Oh, yes, the intercom did crackle to life eventually and someone interrupted. “Pamela, take that away from your neck. Now.” I gestured to indicate I was freezing. The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but clearly, “I need something for warmth!” No doubt you can guess that this was a battle I was destined to lose…as it was designed to be.
Eventually, but not so quickly as to show that they had any truly serious concerns about my safety, guards and nurses entered the room, along with a gurney. Grabbing me, injuring my right shoulder as well as my left in the process, they hoisted me onto the gurney. Without even covering my nude body, they locked me into leather restraint cuffs, wresting me into a painful and illegal spread-eagle position, despite my groans of pain and protest. Then to cap it off, they refused me a blanket. Someone tossed a small towel over my private parts and that was all. I was summarily injected with three punishment drugs and an aide was positioned at the door. Then the goon squad trooped out.
I screamed in rage for at least ten minutes. The aide just looked away, pointedly ignoring me. When I finally quieted, I tried to signal my desperate need for water and for warmth, but the aide pretended she did not understand me. But she did understand me and when she finally acknowledged my requests, which I mimed with difficulty from the restraints, she refused, stating that a blanket was unsafe, a pillow unnecessary and that it was my own screaming that had made me thirsty.
The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to shackle a patient to a bed – or being isolated by force in a freezing seclusion cell has to be universally terrifying and traumatizing. Nevertheless, both cell and/or four-point restraints are quickly employed to curb loudness and “undesirable behaviors” at the Hospital of Central Connecticut on Grand Street in New Britain. I know this because I was subjected to both seclusion and 4-point restraints multiple times in May and June of 2014, despite being admitted with a previous diagnosis of chronic paranoid schizophrenia, and documented PTSD, triggered by precisely these methods of “behavioral control.”
Bizarrely, Dr. Michael E. Balkunas wrote on my chart, “Patient mis-perceives her treatment as traumatic.” Well, maybe so, but I think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while shackled to a bed for 19 hours nearly daily, which is what they did at Hartford Hospital’s Institute of Living in the winter of 2013. This was after I was told to lie down and place my own limbs in the leather cuffs (“as a consequence but not a punishment”) for walking away from the very same “Side Room” that I had just been assured was “not a seclusion room unless you call it a seclusion room.”
Again, maybe I mis-perceived being grabbed and held face-down and nearly suffocated numerous times by staff at Yale New Haven Psychiatric Hospital in August 2013, where they would twice or three times a day forcibly inject into my buttocks 10 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic mis-perception” on my part? Maybe—and then again, maybe not.
Nevertheless, the fact remains that in the ED of New Britain’s HOCC, a security guard in May 2014, grabbed me by my left shoulder immediately after he was warned by the nurse that it was my left shoulder that had a rotator cuff tear.
My New Britain chart records that I was admitted to that hospital, (and to the IOL and others) with a detailed Psychiatric Advance Directive, the first page of which states that seclusion, 4-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” My PAD also makes several concrete suggestions how better to deal with me when I am upset and in crisis. Even though I spent many hours on this document, Psychiatric Advance Directives are virtually worthless in Connecticut and doctors can and do ignore them freely.
Perhaps because of this, HOCC staff literally forced me (“escorted me”) to seclusion and/or restrained me multiple times. They even had male guards strip me naked “for safety’s sake,” and even though I put up no resistance, they had the same male guards four- point me, separating my limbs into a spread-eagle position – a visual rape they clearly enjoyed — while still naked and shackled me into leather restraint cuffs without even covering me first.
Is it any wonder that what resulted was someone who would wash her hair with her own urine, defecate on the floor of her 24-hour-videotaped bedroom and smear feces on the wall? Yet the esteemed Dr. Balkunas, the director of W-1, the general psychiatry unit at HOCC claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic, so he contends. He simply never got the connection between my later horrendous decompensation and this so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either.
I moved to Vermont shortly after being released from New Britain Hospital. No hospital in Vermont has felt the need to seclude or restrain me in any such fashion. In fact they do not diagnose me as having any personality disorder either. I have now moved from the Central Vermont Medical Center to Meadowview Recovery Residence in Brattleboro, where they offer residential and unmistakably kind, non-coercive treatment for both schizophrenia, and for the PTSD that resulted from this horrific treatment.
My grave concern however is that there are people still being tortured in HOCC’s W-1 unit for General Psychiatry, on Grand Street in New Britain. I did not leave Connecticut just to forget about this. Justice must be served in order for change to happen.
I tried to file a complaint through the ADA with the Department of Justice about HOCC’s ED and their refusal to provide me a means to communicate but I never heard back from them, although it is just possible they called my cell phone which has ceased to function…
I beg of you to respond to this email. Please help, and please do something to change New Britain’s HOCC use of torture, and the situation at W-1 in particular. Although I am somewhat constrained in Vermont at present, I would assist in any fashion I possibly can.
Pamela Spiro Wagner
From KEVINMD.COM and Steve Balt’s WONDERFUL ThoughtBroadcast.com
Why I’m not sure that psychiatric medications work
I have a confession to make. I don’t think what I do each day makes any sense.
Perhaps I should explain myself. Six months ago, I started my own private psychiatry practice. I made this decision after working for several years in various community clinics, county mental health systems, and three academic institutions. I figured that an independent practice would permit me to be a more effective psychiatrist, as I wouldn’t be encumbered by the restrictions and regulations of most of today’s practice settings.
My experience has strengthened my long-held belief that people are far more complicated than diagnoses or “chemical imbalances”—something I’ve written about on this blog and with which most psychiatrists would agree. But I’ve also made an observation that seems incompatible with one of the central dogmas of psychiatry. To put it bluntly, I’m not sure that psychiatric medications work.
Before you jump to the conclusion that I’m just another disgruntled, anti-medication psychiatrist who thinks we’ve all been bought and misled by the pharmaceutical industry, please wait. The issue here is, to me, a deeper one than saying that we drug people who request a pill for every ill. In fact, it might even be a stretch to say that medications never work. I’ve seen antidepressants, antipsychotics, mood stabilizers, and even interventions like ECT give results that are actually quite miraculous.
But here’s my concern: For the vast majority of my patients, when a medication “works,” there are numerous other potential explanations, and a simple discussion may reveal multiple other hypotheses for the clinical response. And when you consider the fact that no two people “benefit” in quite the same way from the same drug, it becomes even harder to say what’s really going on. There’s nothing scientific about this process whatsoever.
And then, of course, there are the patients who just don’t respond at all. This happens so frequently I sometimes wonder whether I’m practicing psychiatry wrong, or whether my patients are playing a joke on me. But no, as far as I can tell, I’m doing things right: I prescribe appropriately, I use proper doses, and I wait long enough to see a response. My training is up-to-date; I’ve even been invited to lecture at national conferences about psychiatric meds. I can’t be that bad at psychiatry, can I?
Probably not. So if I assume that I’m not a complete nitwit, and that I’m using my tools correctly, I’m left to ask a question I never thought I’d ask: Is psychopharmacology just one big charade?
Maybe I feel this way because I’m not necessarily looking for medications to have an effect in the first place. I want my patients to get better, no matter what that entails. I believe that treatment is a process, one in which the patient (not just his or her chemistry) is central. When drugs “work,” several factors might explain why, and by the same token, when drugs don’t work, it might mean that something else needs to be treated instead—rather than simply switching to a different drug or changing the dose. Indeed, over the course of several sessions with a patient, many details inevitably emerge: persistent anxiety, secretive substance abuse, a history of trauma, an ongoing conflict with a spouse, or a medical illness. These often deserve just as much attention as the initial concern, if not more.
Although our understanding of the pathophysiology of mental illness is pure conjecture, prescribing a medication (at least at present) is an acceptable intervention. What happens next is much more important. I believe that prescribers should continue to collect evidence and adjust their hypotheses accordingly. Unfortunately, most psychopharmacologists rarely take the time to discuss issues that can’t be explained by neurochemistry (even worse, they often try to explain all issues in terms of unproven neurochemistry), and dwindling appointment times mean that those who actually want to explore other causes don’t have the chance to do so.
So what’s a solution? This may sound extreme, but maybe psychiatry should reject the “biochemical model” until it’s truly “biochemical”—i.e., until we have ways of diagnosing, treating, and following illnesses as we do in most of the rest of medicine. In psychiatry, the use of medications and other “somatic” treatments is based on interview, gut feeling, and guesswork—not biology. That doesn’t mean we can’t treat people, but we shouldn’t profess to offer a biological solution when we don’t know the nature of the problem. We should admit our ignorance.
It would also help to allow (if not require) more time with psychiatric patients. This is important. If I only have 15-20 minutes with a patient, I don’t have time to ask about her persistent back pain, her intrusive brother-in-law, or her cocaine habit. Instead, I must restrict my questions to those that pertain to the drug(s) I prescribed at the last visit. This, of course, creates the perfect opportunity for confirmation bias—where I see what I expect to see.
We should also make an effort to educate doctors and patients alike about how little we actually know. The subjects in trials to obtain FDA approval do NOT resemble real-world patients and are not evaluated or treated like real-world patients (and this is unlikely to change anytime soon because it works so well for the drug companies). Patients should know this. They should also know that the reliability of psychiatric diagnosis is poor in the first place, and that psychiatric illnesses have no established biochemical basis with which to guide treatment.
Finally, I should say that even though I call myself a psychiatrist and I prescribe drugs, I do not believe I’m taking advantage of my patients by doing so. All of my patients are suffering, and they deserve treatment. For some, drugs may play a key role in their care. But when I see my entire profession move towards a biochemical approach—without any good evidence for such a strategy, and without a fair assessment of alternative explanations for behavior—and see, in my own practice, how medications provide no real benefit (or, frequently, harm) compared with other treatments, I have to wonder whether we’ve gone WAY beyond what psychopharmacology can truly offer, and whether there’s any way to put some logic back into what we call psychiatric treatment.
Written months after my 4-week admission to the psychiatric unit, W-1, at New Britain General Hospital/ Hospital of Central Connecticut, in 2014 where I was “treated” and abused by Dr. Michael Edward Balkunas, MD
Nine days after your worst hospital stay ever
you are still wearing the shades
that protect others from you
though no one else believes they are in danger
Those staff however wrote you up
as “assaultive” and dangerous to self
and others. But they didn’t mean it the way
you do now and their description of your
behavior was neither accurate nor truthful
Often they lied, as liars do,
just for the sake of convenience.
Now you are a week away from meeting new “cousins”
who await your vacation in northeastern Vermont,
a place magically named the Kingdom
and the recuperation your mind-body badly needs.
Still unable to let go, you perseverate over
the half-nelson grip of sadistic guards
bent on eliciting pain.
What happened to the nurses’
their concern for “the dignity, worth,
and uniqueness of every individual”,
or their “primary commitment
to the patient?”
When the guards forcibly stripped
then four-pointed you to an bare mattress
they were just replaying their favorite rape
yanking each limb wide
to expose, degrade, humiliate.
Never mind the nurses’ vow to protect
the vulnerable. The official hands-off policy
protected only their own asses.
So how do Truth and Forgiveness Programs proceed
when so many refuse to acknowledge wrong?
The hospital broke every humane rule;
they only stopped short of murder
because you submitted,
nick of time. Yet they had the last word:
stuffing your screams
when they muted the intercom
and slammed the door between you
and the mandatory one-to-one observer.
No one ever is there to bear witness, is there?
That point has always been the point,
from Daddy to doctors.
and all the hairdressers and nurses in between.
They’ve made a religion of secrecy
and no one wants to know
what they don’t want to know.
Call it “our family’s business,”
call it “a private cut and shampoo,”
or just call it, discreetly, “treatment”–
but they can always do what they want to, to you. .
When they break you, they declare
you’re just “one of the family,”
no different from anyone else,
now that they’ve finally fixed you for good.
This is from the New York Times today:
To the Editor:
Re “When Cell Door Opens, Tough Tactics and Risk” (“Locked In” series, front page, July 29):
The events leading to Charles Jason Toll’s death highlight the dangers of prison procedures, especially for vulnerable inmates who suffer from mental illness. Particularly concerning is Mr. Toll’s solitary confinement, a disciplinary technique repeatedly identified as ineffective and counterproductive, and even as torture.
The Justice Department has found that solitary confinement of mentally ill people violates their rights under the Eighth Amendment and the Americans With Disabilities Act.
Solitary confinement worsens psychological symptoms and can trigger outbursts tied to the person’s feelings of hopelessness and loss of a sense of self through extreme social isolation and sensory deprivation.
Providing mentally ill people with appropriate and compassionate mental health care, including integration of psychiatric, psychological and psychoanalytically oriented treatments, is crucial in restoring a person’s identity, alleviating feelings of loss and distress and reducing violence.
Mr. Toll’s solitary confinement, suffering and death were avoidable, and again show that the mentally ill are more likely victims of violence, not the perpetrators.
Middletown, Conn., July 30, 2014
The writer is a psychiatrist.
When I was a patient in May and June 2014 at New Britain’s Hospital of Central Connecticut, Dr Michael Edward Balkunas regularly imprisoned me in a horrific seclusion cell, without a single amenity but a concrete built-in bed and rubberized mattress, for nothing more than making too much noise for the approved hospital milieu. In fact, several nurses took it upon themselves, with Dr Balkunas approval, to do the same. This became literally routine. I was NOT, as is required by the Centers for Medicare and Medicaid, in IMMINENT danger of causing severe harm to myself or others. No, I was loud, disruptive and uncooperative, and I was rude. Period.
My first reaction when the double doors locked behind me was immediately to start screaming, at the top of my lungs, from the base of my lungs. But screaming brought no one. Okay, they did soon come in at me with three IM injections, but they came back every time with IM injections anyway, because as I took to calling it, these were part of the drill, they were “punishment injections.” I was pushed onto my stomach and shoved into the mattress so I couldn’t breathe and injected whether I liked it or not. I tried to say, “STOP! I will take the injections, just don’t hold me down.”
But sometimes they didn’t listen to me, and held me down anyway, and I got scared that they would kill me, because it didn’t matter that I didn’t struggle. There were four of them to the one of me, and they expected me to fight and so they forced my face into the mattress and held me tight, hard, and with all their weight….until I felt my breath go out of me. Did they have any idea that I was NOT struggling, that I felt I was going to die? Did they have any idea that they were killing me?
I don’t know. I don’t know. All I know is that I felt in mortal danger when they wouldn’t let me just accept the injections on my own, in my arm, but insisted on giving them to me by force in the buttocks, even when I said I would take them voluntarily.
Then they would leave and lock the double doors. And I would scream, and NO ONE would respond, even though I eventually learned that they could not only hear me through the intercom hidden somewhere in the ceiling, they could also talk to me. They wouldn’t but they could have. When screaming brought no one, I would strip and urinate on the floor, and I would defecate too as much as i could, and smear everything on the walls and floor. I would even eat it and paint it on my body. I didn’t care, I DIDN’T CARE! I just wanted someone to come in and help me.
Several times I washed and colored my hair with urine, thoroughly. But no one came back for hours. The urine, which completely soaked my hair, had time to dry completely. Not that they cared or noticed. If they had, they said nothing. It was nothing to them. Only Barbara RN asked me what was in my hair, and insisted that she wash it out when finally they released me. I went with her to the shower-tub room and allowed her to do so, but only one other person was kind enough to notice and do that. Everyone else just released me and expected me to somehow be reformed and “better” after my hours of punishment.
Of course that wasn’t the case. I got worse, much worse. I started defecating in my bedroom, at any hour,for any reason, any time I was frustrated or angry. They decided I had “borderline personality disorder,” that I was simply manipulating them. They failed to see that they had traumatized and broken me. They failed to see their continuing role in my behaviors…which were getting worse and worse the more they punished me. Every time they secluded me, or four-pointed me, I regressed more.
Dr Balkunas actually decided to commit me to the State Hospital claiming it would help me “get better.” But really he was just in punishment mode. You could tell, because he wasn’t using any of the methods that you are supposed to use for REAL borderline patients….If he really believed I was BPD he wouldn’t have kept at it. But he knew from my brother, a psychiatrist too, and my own psychiatrist, that I do not have BPD, so that was bogus and just an excuse to torture me. He didn’t really think I had BPD. He just needed an excuse to use solitary confinement and he knew that schizophrenia was NOT a good reason. A very BAD reason in fact, so he invented a secondary diagnosis to use. But the thing is, there are other therapies you are supposed to use in BPD, and he never bothered to treat me with anything but punishment and then threw up his hands and said, Well, the antipsychotic drugs take time to work, so you will go to the SH until they do.
Bastard! He gave up on me without even trying to help…so-called saintly doctor. Just a bastard! Because torture doesn’t work to make me better, he decides that I am the one at fault????? Well GO FUCK HIM UP THE ASS WITH A BROKEN GLASS JAR!
Large picture I did at Yale Psychiatric Hospital, the second one.
The pictures below are actually only 2.5 by 3.5 inches and are artist trading cards. I drew many of them, especially when I did not feel like working on my larger drawings at the hospital.
In mid-February, after a week out of the hospital (and you can read about my hospitalization by scrolling down to the previous post, but, in brief, this had been at Hartford Hospital’s Institute of Living, during which I was kept in seclusion for the larger part of a four week stay and put multiple times, sometimes twice a day for many hours in 4-point restraints. Why? Why? Although I ONCE threw a chair, they told me it was for “not following directions.” To add insult to injury, every incident in which they restrained me was accompanied by three injections in the buttocks of Haldol, Ativan and Benadryl, despite my policy of passive, completely non-violent non-resistance.)
In any event, in mid-February, after I had spent just a week at home, I became acutely psychotic again, and in consultation with the only doctor I trust, a friend drove me to Yale New Haven Hospital’s emergency department. There, after a very long and arduous wait — alas, I cannot say much that is good about Yale’s ED. It felt like the psych/alcohol patients – and there were no discriminations made between the drunks and anyone else — were lined up on their beds in the hallway like buses at a terminal for what felt like “miles.” In fact at one point there was probably a line 15 gurneys long snaking around the corner until I could not see the end.
I was there for two and a half days, maybe longer, I do not recall. In fact, I remember nothing about my ED stay after I was finally “admitted” to the actual psych portion of the ED, as opposed to the hallway. I believe I was finally given medications, but also that I was no longer permitted access to my artist crayons, which meant that I only wanted to sleep and likely did until I was admitted to the Yale Psychiatric Hospital, a street or two away.
To say that my experience at YPH was an order of magnitude better than it had been at the IOL or even at Natchaug Hospital is truly not to give YPH enough credit. I scarcely want to mention the other two hospitals in the same sentence, that is how different Yale is and I say that even though I once considered Natchaug my “gold standard.” No longer, no longer. I think Natchaug was decent once, but only because of the civilizing and humanizing effects that the director of nursing, Sharon Hinton, APRN, had on the hospital. Once she left, the whole place went to pot, as evidenced by my experience during the last two stays, which went progressively from bad to terrible without her there…literally without her protection I was brutalized by a dehumanizing medical staff that had been left to do whatever it wanted to on its own, to hell with the consequences to the patients.
Be that as it may, and we know that the Institute was never humane, Yale took me completely by surprise. I was hard to surprise, and hard to convince that they were for real in their gentleness and kindness, let alone in their determination to treat me and everyone there with respect and dignity. I was certain that they would prove me right, that SOMEONE would be put into restraints, that someone would be violent enough to push their buttons and get 4-pointed. But it never happened, not in the entire three weeks I was there. Not even when a patient threw a punch or a push. Not even when a patient screamed bloody murder or used foul language. Nothing that earned me or anyone else seclusion or restraints elsewhere even came close to pushing the staff’s anger buttons at Yale. Instead, they persisted in using persuasion and gentleness and kindness…and if anyone lost it, if anyone became angry and could not keep it together, so far as I could tell, that staff member took themselves away from the situation to cool down, and did not take it out on the patient.
The most amazing things happened. No one forced me to do anything. Not even to take medication. I agreed to take it, after some discussion with the doctor and social worker…but when I evinced some doubt about the side effects, instead of pooh-poohing them as the doctor had at the Institute, Dr Milstein agreed with me, saying that the Zyprexa definitely increased appetite, and that it was not imaginary or something that was in my control, the way Dr Banerjee did at IOL. Instead, he and the other team members not only agreed to help me control what I ate, but went out of their way – I believe they actually went “Stop and Shopping” – to provide me with my own private supply of raw vegetable snacks in the staff refrigerator to eat at any time of the day…just so I wouldn’t have to be tempted by the hospital snacks of Doritos etc.
Dr Milstein asked me not to worry about what they did or did not do “extra” for me, and I tried not to. But when two large bottles of brand name Diet Coke kept appearing for me every day, and when the resident was sent to buy me batteries for my personal pencil sharpener (with a grinder not a blade), just so I could continue to do my artwork and not rely on the staff to sharpen my pencils in the back, well, I knew 1) they were truly watching out for me and treating me with TLC, or what certainly felt like extraordinary care, and 2) they were in fact spending “extra” money, if not indeed their own money just to supply these special needs…All of which – or NONE of which would have mattered at any other hospital or to any other staff. If I had no pencil sharpener, who would care? If I had to eat hospital food, who gave a damn? Dr Banerjee basically said it was MY fault and only my fault if I gained weight on Zyprexa, that none of his other patients, the good ones, ever did. But at Yale, all these matters were important to me, and so they were important to Dr Milstein to to Chris Simpson the social worker and to the other team members. Not just as a matter of words, but to be taken care of so I could both take the Zyprexa and do art.
Just as important, Dr Milstein took at least a half hour every single day, and I think sometimes it was more than that, simply to talk with me and listen to what I had to say. Even if it was only to rant about how badly I had been treated at the IOL. He repeatedly told me that he just wanted me to learn to trust again, to believe that not everyone was against me or would hurt me…And if I did not learn that precisely, I did eventually come to believe that the staff at Yale were trustworthy and kind and meant what they said about their NO restraints and NO seclusion policy, for everyone. I may had still had frissons whenever someone screamed or threw a fit, panicking, believing that 4-point restraints were finally going to be resorted to. PTSD is not that easily overcome after all. But I grew more trusting, and by the time of discharge, I was able to thank them all for everything, to know that they had gone out of their way for me, and not feel too guilty.
I did a fair amount of art while I was at Yale Psychiatric Hospital. I will post more in the coming days.
One of the terrible consequences of the APA’s DSM is the Multiple Personality Mayhem that resulted from that fad diagnosis of the late 80s and 90s. I was hospitalized many times in those years, and I was appalled even then at how this once extraordinarily rare diagnosis was suddenly “popping out of the woodworks.” Somehow, multiples, with their putative history of extreme childhood sexual torture, were everywhere. At any time on a psychiatric unit of 18-20 beds, you might see 4 people supposedly suffering from MPD. It was absurd, but try and point that out to the professionals! No, they were much too busy creating very sick individuals out of the whole cloth of their own — the psychiatrists’– minds!
Even at the time I felt very frightened by what was happening, as I understood how difficult it was going to be, when it was all over, for such patients to come to grips with the fact that their disorders were invented for them by the doctors who wanted to have their time in the limelight. Now that the fad is over, where have all the multiples gone? Have all of them been converted to DID — that is, are they still being lied to? or has anyone decided to be honest with them and admit that the Dx was bogus all along, that they never did have MPD or any other such disorder. That their so called multiple personalities were suggested to them by the therapists and invented for them ditto.
It was a horrendous situation, and one that I do not believe anyone has dealt with completely honestly or fully to this day…Of course not. When did you ever meet a doctor, much less a psychiatrist willing to admit he or she made a terrible mistake, or say, I am sorry, I will make amends. Hah. That’ll be the day.
Better version of the above photo of my art piece is below this post (I managed to capture the entire picture finally and didn’t cut off most of the sky…)
I have just given a speech that I want either to record for putting up here, once I upgrade to Pro, or if it gets published as an Op-ed somewhere I will point you to it. But for now, let it only be a hint of things to come…
Otherwise, exhausted, I don’t have a great deal to say today except to point people to an article that I found in Science Daily, an article that I found both obvious in the extreme, and yet which I believe most people desperately need to read. If it isn’t time now to stop incarcerating people of color, for NO reason other than the color of their skin, then I dunno what time will be right for it.
ScienceDaily (Nov. 11, 2012) — Mental health experts from Meharry Medical College School of Medicine have released the first comprehensive report on the correlation between the incarceration of African American males and substance abuse and other health problems in the United States. Published in Frontiers in Psychology on the 12th of November, the report looks at decades of data concerning the African American population rates of incarceration and subsequent health issues. The authors conclude that the moral and economic costs of current racial disparities in the judicial system are fundamentally avoidable, especially if more resources are spent on education and treatment.
Money would be better spent on treatment than on incarceration
The study highlights the fact that with regard to African American males in the prison system, individual States are paying more to lock up non-violent offenders than they are for education, since 60% of incarcerations are due to non-violent, illicit drug-related crimes. The authors also point to a previous study from 2,000 showing that the total cost of substance abuse–be it incarceration, crime or treatment–is over $500 billion per year for the US.
These and other statistics have led the authors–scientific experts often called upon to testify in court–to conclude in the paper that: “Spending money on prevention and intervention of substance abuse treatment programs will yield better results than spending on correctional facilities.”
Need more teachers of color
Even though crime rates have dropped across the country over the past two decades, incarceration rates have continued to skyrocket–with black people accounting for a largely disproportionate 38% of inmates. More alarmingly, incarceration rates for African American males jumped 500% between 1986 and 2004. And while substance abuse increases the chances of individuals’ ending up in prison, those without any previous history of substance abuse have a higher risk of substance abuse once they leave the prison system, and could more easily fall back into the judicial system instead of getting a solid job or education.
According to Richie, much of this disparity is due to a fundamental problem of perception on both sides. For example, negative reinforcement of disruptive behavior is prevalent already in preschool–young children of color are often treated more harshly for behavior similar to their white peers.
“One step in the right direction, would be to have more black teachers during the early stages of development” says Dr. Richie. “From a behavioral scientific perspective, having teachers that look like the students and the parents of students from an early age could go a long way in changing perceptions of authority for black youth.”
Getting more African American teachers means increasing the number of African Americans in the higher education system and getting them out of the incarceration system. In the end, the authors conclude, effective treatment of substance use disorders and alternatives to prison would cost the United States much less and improve the lives of African American males, their families, and the entire country.
The Original Science Daily article can be accessed here: http://www.sciencedaily.com/releases/2012/11/121112090734.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29
And PDF of the original paper (fairly short) can be found at this site:
I was admitted last Tuesday night, the 17th of July I believe it was, to the Institute of Living, the psychiatric division of Hartford Hospital in central Connecticut. I do not remember this. The fact that I have amnesia for it and for most of the Wednesday following only occurred to me on Thursday, a day and a half later, when I wondered — the train of thought must have had to do with the seclusion episode that took place Wednesday evening and which I described in yesterday’s blog post — why they had been so violent with me, why they had so quickly secluded and threatened me with restraints in a situation that didn’t come within miles of “requiring” them. Surely, I thought, the staff member who admitted me, whoever that had been, had asked me a critical question, which is on every admissions questionnaire upon entering a psych unit or hospital these days: have you ever experienced trauma or sexual assault? (or words to that effect). I could not, and still cannot, for the life of my body or soul remember anything asked or answered at that time. There’s little left in my memory beyond a vague “snapshot” of being wheeled into The Institute of Living (hence forward to be called by its nickname The Toot or by its initials, The IOL) and my understanding that I had been transferred out of the ER. Then the memory goes blank until many hours later. Understanding only as late as Thursday that I had this gap, and pained by the violence dealt me the night before, I went up to my “contact person” and asked about my admission. Could I find out whether this question was ever asked me, and what my answers were? At first, naturally and as a matter of course, she refused. That was SOP. Refuse, refuse, and refuse. So as I stood there, earnest in my request, she seemed about to summarily dismiss it as just another bothersome demand from a too-demanding patient already much disliked by all. What did I expect, cooperation? But to my surprise, her misgivings and the flicker of irritation that had crossed her face at first changed to a flattened look of resignation. She agreed to read my answers to the questions to me. But that was all she would do, so don’t go expecting more than that.
As she read from the top, a few memories stirred and woke, but only temporarily. I fear they soon faded again into the all-white-out of oblivion. Only the trauma memories remain, for they apparently are stronger than thieving Ativan. Can I push myself to remember what her reading my answers back to me recalled to mind? She told me…what? She said that I told the admitting staff member, whom I do not remember a thing about, do not even recall if that person was male or female, doctor or nurse or what…I told that person I was not homicidal, not suicidal, not hearing voices, and that I didn’t need to be in the hospital. Three answers were true, or true enough by then. After having been nearly killed in the ER the people in my head/outside of it, who tell me to do things to myself were not so relentlessly horrible in their demands…so I was indeed no longer suicidal, homicidal or in need of hospitalization. I just wanted to get out of there and go on my upcoming writing-retreat vacation.
As I recall the little I recall now, this nurse, my “contact person” read to herself a lot of the paperwork and relatively little aloud, despite her promises. I kept asking what she had read, and prompting her to read out loud, but she let forth only a few phrases. I still do not know why… though I can guess that pretty bad things are written there about me. That would not surprise me one iota. I do not really care. They will largely be lies or descriptions of that awful scene in the ER from one very biassed point of view. No one will tell MY side of the story, that’s for damn sure. Whatever is said there will be based on what the ER personnel and the guard-thugs did to me, but if my contact person believed them reading them, and never bothered to find out the half of it, then who knows what they all thought about me, or believed…Anyhow, I do not care, because they too were thuggish, professionally and psychologically.
But the big question was yet unanswered. Had I ever in fact been asked about past experience of trauma or sexual assault? Contact Person, whom I won’t name as she was at least marginally decent to me, now seemed interested in this too, having paged through the lengthy document and not found it. She seemed puzzled, said she knew it was a standard question. She started perusing the thing again from the beginning. A minute or two later, she poked a page.
“Ah, here it is. And your answer is blank.”
“So the person just skipped over it. They just skipped it!”
“It appears so. Do you want to answer it now?” She took out her pen.
“Yes, and yes. I have experienced sexual assault three times. And severe trauma due to seclusion and restraints in many hospitals.” I looked at her. She was writing. “Tell me what you wrote.
“Experienced sexual assault. Has issues with seclusion and restraint.”
“NO! I said, it was severe trauma. I have PTSD, ask my doctor. Ask, I dunno, give me a test. I cry just talking about it. My heart rate goes up just thinking about it, even though it happened more than two years ago. It was trauma, and you cannot do it to me again!” She wrote something on the paper but didn’t read it to me. She just clicked her pen off and stood.
“Now you have your answer. I have things to do. Let’s go.” With that, and no discussion of what had taken place on Wednesday night, let alone in the ER, she hurried me out of the side office so she could go back to the nursing station to do some “real work.”
I suppose there must have been some incidents of relative kindness at the Toot. There must have been exceptions to the Hartford Hospital IOL “coal dust standard.” But only Albert, a tech, stands out. Because they injected me with too much Ativan on Wednesday pm and I was discharged Friday noon, I had very little time between the ER’s monster dose and D3South’s equally large dose of Ativan-it-Away to retain much of anything but what stood out enough to stick, and really stick tight. Their puny kindnesses mostly did not, except for Albert.
On the other hand, the sheer meanness of the staff was astounding. I had a semi-meaningful interaction — though unpleasant – in all that time with only one individual who was not programmed to speak with me. And even that started out with nastiness, though I admit it was sparked by something that was “my fault,” as you will see.
Friday morning I needed migraine meds and my 8am pills. I went to desk at 7:55 and asked for them. A nurse or tech or someone –I never knew and no one ever bothered to tell me who or what they were — lingering at the desk said that the med nurse somewhere in the back would get them. I wandered off, figuring it would take some time and she would bring them to me, which is what they did at every single place I have ever been. But no, by the time I thought about it again, realizing that she had never brought them, it was 8:45 and people were lined up for their 9:00am meds already. I signaled above them to the nurse at the med window that I had not gotten mine for 8:00am yet. She told me that of course not: I left the med station; why should she go after me? Then she indicated that I should get in line to be next…even though that meant stepping in front of someone else. Okay, so I got in line, and – oh, I do not remember all that happened except that I became angrier and angrier with her, resenting her attitude. As a consequence, I did everything I could do to irritate her. She poured the meds at the computer, where I couldn’t see them, saying their names softly to herself so I asked to see the packaging. I didn’t trust her not to withhold or add something I didn’t want. Because I had asked for Imitex an hour before I sensed she would not include it. Well, lo and behold: No Imitrex! So I took the pills, but asked her for the Imitrex as well.
Ah, revenge time! “I will get the Imitrex at 9:00 am sharp, when it is due. That is 10 minutes from now. You can come back and wait in line then.” I just stood there, not budging. I would never stoop so low as to impugn a person’s person, but I probably let loose a few curses and most certainly raised my already angry voice a few decibels. Finally, speaking in a calm, respectful voice, a man whose name I learned was Albert came up to me asking in such a polite manner that I even looked him in the eye, to “please just lower your voice” so he could hear me tell him what the problem was.” Well, treated in such a fashion I understood he would wait for me to calm and not get angry back so I was able to take a few breaths and then make him understand what she was doing…He said, with the med nurse standing well within earshot, though I do not think he intended any manipulation, “It’s okay, don’t worry. It’s nearly nine, and I’m sure the med nurse will get your medication for you.” (I was sure of quite the opposite but harrumph! Well, what could that SOB, excuse me, DOS — daughter of a stud (med-nurse) do but give me the Imitrex now?) I might have crowed, but instead, thanks to Albert and in respect for him, I took it without a fuss and thanked him again.
This sort of treatment gives the lie to what so many providers – both individuals and insitutions — say about the goal of “empowering patients.” What bloviated BS! What they really want are not empowered patients but cowering patients, people too scared and drugged up to object or make trouble in the first place and then who continue to cower before the establishment MD’s power structures all the way to the last place.
My butt hurts from sitting slouched on a bed all day. I need a break. So I am going to post this and go outside in the cooling darkness of the Litchfield hills and drink the air. Since I have nothing I have to do here but write, I will post tomorrow about that single meaningful encounter I had while imprisoned at The Institute of Living. If I still feel it is worth writing about, which as I think about it, it may not be.
Oh, what the heck: Basically, it concerned an encounter with this female tech, a woman who in passing me in the hallway, the first time she had spoken to me so far as I knew, accused me of moral turpitude (not in those words), made a statement shaming me for my behavior on Friday morning at the medication window. What had I done? By talking too loudly, I had made “the poor man behind [me]” cover his ears and point at his skull to communicate his displeasure. PLUS, I had made everyone wait a good 30 minutes…I knew the 30 minutes was an exaggeration, so I didn’t even touch that, but the shaming tactic got to me. I went back a few minutes later and said I wanted to speak with her. We went to a couple of lounge chairs in the hall and sat down.
“What precisely did I do that was morally wrong this morning?”
“Do you know you talked so loudly this morning that the poor little man behind you was covering his ears and pointing at his head?”
“So I should have talked more softly, but I do not have eyes in the back of my head to see him. I could not know he was communicating by pointing at his head. It is not morally wrong not to have eyes in the back of your head, nor is it morally wrong to speak in a loud voice.”
She reiterated the case of “the poor little man behind you pointing at his head.” But I continued to press her on what was morally wrong because I didn’t have eyes to see behind me. Finally she granted that I could not help not seeing him and that it wasn’t actually a morally wrong thing to do, to yell or talk too loudly. At this point I said to her, nearly in tears because just having a calm conversation had taken such effort on my part, “Be careful what you say to someone on this unit you know nothing about. Words have power and you should use that power with care. You have NO idea how those words you spoke affected me, no possible idea…”
She gave me an intent look, almost a fearful one, as if afraid that — well, no, I don’t think she gave a damn whether or not she caused me any emotional harm. She no doubt despised me along with the rest of the nursing staff. But perhaps she suddenly appreciated how even her words were important and powerful, and carried weight and could do some good but could also do just as much psychological damage and maybe more sometimes than the loud voice that damaged mostly ear drums.
(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.
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.
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.
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
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
“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.
Most of what follows below is a cut and paste from past blog posts, plus the latest update, but I wanted to do so in order that newer readers would understand where all this comes from. And also understand why I am so adamantly opposed to the coercion of the Involuntary Outpatient Commitment bill.Although I am writing this on Sunday, April 1, I may update it further as the days go on…You might want check back in a while to see if there are other developments, though anything big will get its own post.
As I mention in the post below, I wanted to bring the incidents I describe to the attention of the office of Protection and Advocacy for Persons with Psychiatric Disabilities (Or Mental Illness). I did so, about 6 months ago, and after an investigation, they found that the hospital was wrong and abusive in their repeated use of seclusion and restraints. What is more, they referred my case to the Department of Public Health recommending sanction of the hospital and immediate amelioration of the conditions that produced such abuses. Alas, I believe this means essentially just a slap on the wrist and not enough monitoring or chart reading to really keep up with them or stop them from hiding the same abuses that have gone on there for years. After all, patients have known about it for years, but no one has said anything because they have not known what to say or known that they had the right to better treatment. Or something!
I do not think that merely sanctioning the hospital or telling them to “do better” will change anything in that culture of embedded violence. So I went to the local TV station’s investigative team to ask for an investigation, and I went back to the O of P&A with more information about how I was treated by the very same security guard during my ER visit this past February, when he grabbed and pinned my arms behind my back, without provocation and without cause. He had no right to so much as touch me and should never be touching psychiatric patients so liberally. Especially when no one was in ANY danger! WR who has been dealing with my case told me he is not going to drop it, is going to the supervisors and higher-ups and see what more can be done. I myself will keep at it. This will not rest. I do not want revenge but I do need to know that they will not keep doing what they are doing to others...I need to know that patients are physically and emotionally safe there and that the one security officer who is so abusive there is taken off the psychiatric service as a danger to everyone
On my “On Psychiatry and Authority” post, especially about what they did to me at “Middlesex Hospital, I can now write with more accuracy. 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
“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.
Some memories are returning. Not a great many but this one was triggered by something I heard briefly on television the other day, simply the mention in some other context, of the words “restraint chair” and in an instant I flashed back (and I use those two words advisedly, since I do not actually know what is meant by a “flashback”) on something that happened when I was a priso…excuse me, patient, albeit involuntary, at Manchester Hospital in the fall of 2009.
This had been an extremely brutal stay up till then. When I was admitted the psychiatrist I was assigned to Dr BZ — I have written of this elsewhere so I won’t recap the whole thing, as memory is fickle and I may have misremembered it by now — stopped most or all of my meds, saying that if I was there, clearly they didn’t work. Then he swore I would take the one drug I refused to take: Zyprexa, and he scheduled a forced medication hearing, which naturally I would lose, having no power and only my word against his as to whether or not I needed it. Well, I did lose it, but inexplicably, and sadistically, instead of forcing on me a drug that by all accounts helped me, he changed this to TRILAFON, an old drug that did nothing for me and only made me completely miserable.
The upshot was that every time they came to me with medications, I flatly refused to take the Trilafon, even under the threat of a Haldol injection, The goon squad was called, and since I refused to quietly accept my punishment, they assaulted me, stripped me, and forcibly injected me. This got to the point that they started four point restraining me to the bed, just to inject me…And it because such a routine that to avoid the “tiresome process” of getting out the restraints they simply left them attached to my bed. I know this not because i remember it but because my friend Josephine told me she saw them.
Me? I was so snowed by Haldol most of the time, that I could never even find my room, and had a sign in large letters taped to the door so I would simply recognize it when and if I managed to find it. Also, I was so dazed that I had to wear red slipper socks as a fall risk…but no one ever decided that maybe this was due to the drugs they were giving me!
Anyhow, one day, one day…and here is where memory kicked in after hearing those awful words on TV: one day the nurse who was most in charge of the daily torment, came to the door with another nurse pushing this large chair, and i recognized what it was at once. I had seen them before, having reviewed a book a long time before for the LA Weekly on the treatment of the mentally ill both in hospitals and prisons, a book, moreover decrying “barbaric treatments” of the past.
“You aren’t going to put me in that, are you? I’m not coming anywhere near it!” I shrank away from them and ran to the other side of my bed.
“We won’t restrain you, not if you behave. But we want you to sit in it for today. There are no restraints on it now. It is just a comfortable chair. Come, sit down. The student nurse will be with you all day today.”
Then they essentially forced me to sit down and stay in the chair. Or else…I was terrified. and the student nurse knew it. Luckily, she would turn out to be a kind and wonderful young woman (her experience at Manchester almost drove her away from psych nursing, but as it turned out she discovered Natchaug Hospital, and became one of their most beloved nurses). As she told me later — because memory mostly fails me here, but for her reminders — she did Reiki with me, the practice of nearly touching a person but not quite, and moving her hands along my body, not sure how it works or worked, but she later told me, at Natchaug, that I responded well to it, and stayed calm all day. I even as she said, took my meds. Which means I actually swallowed the Trilafon, probably because I couldn’t bear to have another fight in front of her.
Whatever was the case, if Reiki is as I described it, no wonder I responded well, as it was a NON-physical therapeutic way of dealing with me, non-assaultive, gentle, non-trespassing and non-brutal. Why the rest of them could not have followed suit or come up with some other way to treat me as she did, I will never know. Clearly they learned nothing from her; she left and likely they are back to treating others as they did me.
I believe they would indeed have used that chair as a restraint chair on me. I do not think they brought it in just as a comfortable chair, I believe it was to intimidate me, to cow me, but I think too that they were in fact prepared to use it. I do not have the slightest doubt. I would put nothing past those people who so brutalized me as to put me in four point restraints over and over during more than 8 days. For all I know it might have been more than eight days. I simply do NOT know, as amnesia has sealed up much more than memory preserved.
Enough for now. I need to write tomorrow about the Versatile Blogger Award that DogKisses gave to me. I am shamefully late in thanking her. And I do not know how to place the badge on my site, but she was such a lovely blogger to do so, that I do owe her her own post of thanks and appreciation.
(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.
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.”
“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.”
“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.
I started the post below as a response to a very kind email from “Mary” but it eventually got so long and involved that it became more of an essay than a letter. I hope she will understand why I put it here, rather than sending it to her alone!
First, here is her letter to me:
Thanks, Pam. I learned from your very well written account, “On Psychiatry and Authority.” I felt like I was in the room with you, it was so descriptive. I recently had a call from a man who is bipolar. He said while off his meds, he was in an encounter with his girlfriend and was arrested on domestic violence or disturbing the peace charges. He told the officers he was a psychiatric patient, but of course, jails have become America’s answer to mental illness. The police threw him into a cell after booking him, then released a police dog on him in the isolated cell rather than simply locking the door. He said the dog ravaged his leg, exposing bone, and he was taken to the hospital. There may have been a time when only black mental patients were treated this badly, but the caller was white. I wrote about more murders and abuses against mentally challenged people in my blog – Letter to Mary Neal’s Terrorists – http://freespeakblog.blogspot.com/2010/10/letter-to-mary-neals-terrorists.html
I am still undergoing much censorship, Pam, likely because my advocacy to decriminalize mental illness is a threat to the private prison industry. Over half the inmates in America are mentally ill. If they are released to community care under AOT programs or treated as hospital inpatients rather than prison inmates, depending on their offenses and functionality, it would not be more expensive for taxpayers, but it would negatively impact prison profits.
As I read about your brutal treatment in the hospital, I was so sad. Here I am advocating hospitals rather than prison, and you were treated that way by psychiatric professionals. The only way I can continue after learning what happened to you and others who were in abusive hospital environments is by thinking about people like my caller who was not only tossed in an isolated cell naked, but a vicious dog was sent in to attack him after that. I also think about my brother Larry who was murdered under secret arrest because police were fed up with being his psychiatric caretakers. Although hospital care is only marginally more humane than incarceration in some cases, there are fewer permanent physical injuries and murders among hospitalized patients.
Thanks for sharing your experiences.
Assistance to the Incarcerated Mentally Ill
And my response:
Thanks so much for your email and sympathetic understanding of the traumatic aspects of my so-called “treatment” at Muddlesax Hospital last April. Such treatment was, at other hospitals especially in the 80s and 90s and even in the early 2000s, so much worse — I mean in terms of real physical violence perpetrated against me while being literally, bodily, forced into restraints — that I was almost reluctant to write about such a relatively mild incident. But the humiliation of having to put myself into restraints was almost more unbearable than the, in some sense, honorable freedom to resist! It just riles me completely…How dare they put me in such an untenable position? Then again, I suspect it was intentional.
Nevertheless, I am very much aware that in Connecticut hospitals way too many people have died while they were in restraints, and this in the not so distant past. In fact it was investigative reporters at the Hartford Courant back in the late 90s —and their article entitled, I believe, Deadly Restraint — that served as a national catalyst in getting hospitals to stop the wholesale use of seclusion and restraints. At the very least it started a national discussion about the use and abuses of force in psychiatric hospitals and (I think) juvenile detention centers. (God forbid anyone at all should care about jails and prisons however…Those people obviously deserve it, they are criminals after all… Right?)
But even though most hospitals in Connecticut claim to have reduced the use of force to the most extreme cases, (they will force medication though, through the use of forced medication hearings) I do not believe that can be so. Because I cannot believe that I alone “deserve” seclusion and restraints and yet I have been subjected to such abuse time and time again. Until 2005, I was put in S + R at least once almost every time I was hospitalized and quite often multiple times, for many long hours. After 2005, I would say the incidence was reduced by about half. That means that half the hospitals still indulged in this abuse, one of them, as I wrote earlier in this blog, employing them almost every day for a week and a half!
Of the hospitals that did not physically restrain me, most were still abusive, but more subtle about it…For instance, they would put me on Constant Observation, but then tell the “sitter” not to speak to me. Or they would institute the common but for all the commonness of it, still abusive policy, of making the one-to-one person being ignored sleep with her hands and head completely uncovered. Now, all hospitals are freezing these days, I do not know why. But it was well known that you had to bring a sweater or sweatshirt everywhere, because the air-conditioning would be out of control and everyone was too cold no matter the season. So to have to keep your hands exposed all night was cruel. But the reason that they insisted on it clearly had nothing to do with it being “safer” for the patient. No, it was punishment. That is ALL. The whole purpose of one-o-one in those places was punishment. You could not talk to the sitter, one, and the sitter had to follow you even into the toilet. And all the while deliberately ignoring you if you spoke to her..So what was the point, if they kept the close eye on you they were supposed to, they knew you could not hurt yourself. So the point was simply to humiliate and torment the patient so they would beg for “freedom” and pretend or at least mouth the words “I am safe.” Those magic three words were all that were needed, but you had to say them so that the nurses could hear.
For many years, I believed that this was a hospitals-wide, state-wide, business as usual policy, the no-talking, hands exposed rules, and that it was reasonable. Until I went to Natchaug and Sharon told me that Natchaug didn’t believe that one-to-one should be “punitive” in any way. And by the way, she said that word, “punitive,” not I. Nevertheless, at Natchaug, no one made me sleep with my hands outside of the covers and the sitters freely spoke with me. In fact, once they understood that I needed them not to share their own lives with me, because then I would feel the need to take care of them, something that would not be helpful to me, they wanted to find out specifically how they could help me.
But back to the use of restraints. I am only 5’ 3” and from 2005 until 2010, I weighed between 92-105 pounds. Surely I could not have been that great a threat to anyone. In fact, at one hospital, one I will not name, fearing them so much I wouldn’t put it past them to take revenge, they had a somewhat better policy of dealing with agitated patients. At a Code Orange, staff members from every unit converged on the “victim” (sorry but that is how it felt) and “held” her until she could calm herself. Now, this “holding” often consisted of pinning her bodily to the floor, which itself could be anxiety provoking. And at least once, in my case, a male nurse who openly detested me, tried to pin me to the floor on my stomach, which I had read was something to be avoided as people had died when held down prone, as opposed to supine (on the back)! But in general the technique worked, if the victim was held down long enough. Basically, if he fought, there were enough people holding him down to allow him to exhaust himself without doing anyone harm. And then, when exhausted, he would calm down and either take PRN medication, or assure the head nurse that he would be okay now. It worked, though, no matter what I thought about it, or of the people doing it. And it did avoid all use of restraints, though of course by itself it is already a form of restraining people, it just avoided the use of mechanical restraints. That though, still makes a big difference…
Forgive me if I segue again into another digressive subject for a minute or two, but the subject of 2010, which recently turned the decade corner into 2011, brought to mind the fact that having taken Zyprexa (most of the time) since then has caused me to gain a fair amount of weight, another subject that is near if not dear to my heart. Oh, the damage that psychoactive drugs do! How dare doctors blame us, the people with schizophrenia, for it? Don’t we have enough trouble without being blamed for the side effects of the very medications that they prescribe? Do you know that for decades, and sanctified as Truth in psychiatry textbooks, they insisted, without any reason and making less sense, that schizophrenia itself was the cause for so many of us to be obese? That was utter nonsense to my way of thinking. Every single memoir about sz that I ever read revealed that the author had been thin UNTIL she or he was treated with antipsychotic drugs, and then, blammo, food becomes the enemy. Yet the shrinks actually insisted, against all the evidence, that it was the illness and not the drugs that was behind the huge % of patients exhibiting this “signal obesity”.
Well, all along I thought they were full of shit, pardon my french. No, I didn’t just think it, I KNEW it. I had not a doubt in the world. And you know what? I was right. The latest research has borne out precisely what I’d asserted all along: when investigators looked at a population of people with schizophrenia that for one reason or another had never taken antipsychotic drugs, they discovered that this neuroleptic-naive group was thinner than average, and that it was in fact the drugs that had made us obese, sometimes massively so, rather than schizophrenia. And it just infuriates me, not just the obesity, it is not just the weight gain the drugs cause, it is the fact that we patients have been blamed for something that they, the doctors and nurses and their GD drugs, inflicted on us. Maybe it is especially difficult for me, with my history of anorexia and my intense wish simply to disappear, but what about those who will die from drug-induced heart disease or diabetes?
I know, I know, Mary, you may be on the other side of this argument, or it might appear that way, because you want more treatment to be available, not less. I do in general agree with you: Prisons are overflowing with the mentally ill, who should never have been there in the first place. In fact, I think the prisons are overflowing with an awful lot of people, especially those of a certain darker-hued skin, for little reason more than the very color of their skin! I mean, tell me why Robert Downey Jr and Lindsey Lohan, aside from their celebrity status, get caught again and again with drugs and cocaine etc, yet are sent off to posh rehab centers, with a smile. But should you happen to be an unknown, POOR, god forbid mentally ill person of a darker hued skin (and let’s face it, a light/white South African immigrant would not be treated the same way as a dark-skinned someone with Nigerian roots!) if you are that person and you offend in some way just 3 times, well, then, you are sent away to one of California’s really “posh” ha ha ha penitentiaries FOR LIFE! Things like that just make my blood BOIL. And don’t get me started on the insanity of our drug laws!
But forgive me for going so far astray. It is just that the whole subject of prisons and what we do to people in them is a really sore point with me, and not just how we treat the mentally ill there, though that is about as atrocious as it can get…Need I even mention the “extra beds” in unused supermax prisons being used to house “unruly” MI prisoners? It makes me want to scream and throw up at the same time.
Well, no doubt this “essay” is both incoherent, in the sense that it doesn’t cohere properly, and just plain incoherent! I admit to a bit of laziness, as it is late at night, and i need to take my MEDS and go to bed. So, at the moment, I am not going to polish and fix it. I am going to pretend that since this is “only” a blog I can get away with shoddy ill-organized writing, and call it a night. Which is what I am doing forthwith…Good night, and thanks, Mary N, thanks a million again.
“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~
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