Tag Archives: Memory

THANK YOU DOC, ECT SAVED MY LIFE…Ooops! Maybe not…?

Terrified Patient Having Shock Treatments
Terrified Patient Having Shock Treatments

ELECTROSHOCK AS HEAD INJURY

http://ECT.org/effects/headinjury.html

Report prepared for the National Head Injury Foundation

September 1991 by Linda Andre

Committee for Truth in Psychiatry

 

INTRODUCTION

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.

REHABILITATION

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.

A CONCLUSION

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)

 

 

 

REFERENCES

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.

 

SPACE, MATTER, LOVE

   
Birth of Wisdom symbolized by the Eye in an Egg
Birth of Wisdom symbolized by the Eye in an Egg
               “The world is charged with the grandeur of God.” Gerard Manley Hopkins

As an older adult with severe double vision, no depth perception, and “convergence insufficiency,” I saw a special Vision Therapy trained optometrist for about a year. The experience I write about below happened just before I ended treatment. 

Early one morning, well before day lightened behind the fence of trees to the east, I went to move my snowed-in car to make way for the plows. As the automatic door opened, letting me out into the cold, I could see that falling snow against the street lamps made sparkles and sparks. I headed towards the car, thinking of nothing but the cold. Then, brain clicked, like the flip of a switch, and something in my vision changed. Instead of seeing the snow fall in a sheet, curtain-like, in front of me as I always had before, I now walked inside it, as if in a snow globe, separate flakes plummeting around me, each on a different plane, riding a separate moving point in space as it fell.

Startled, I blinked my eyes, thinking the curtain would close in again. Nothing. I looked down at a snow-covered bush next to me on the sidewalk. The ends of its bare twigs were lightly mounded, contrasts heightened, the whiteness of the snow and twigs gently vibrating with laser-etched clarity and precision of detail. I can only describe what came over me then as a feeling of connectedness, of affection for the universe. I smiled as I stood there, realizing that I was seeing depth, I was seeing space, and the spaces between things, for the first time. At least for the first time that I could remember, for the first time since who knows how long. That was all, and it was everything.

I had a dream once that I never forgot, a dream in which I actually ate chocolate. I tasted it and I swallowed it, and in which I stroked a cat and was able even in the dream to feel the soft silkiness of its warm fur. Both of these acts, though in reality mental, not physical, took enormous effort, even courage. I felt, while sleeping, that if I were to break the spell of whatever made these experiences “forbidden,” neurologically speaking, something would happen. It was not clear to me at the time of this dream whether it would be catastrophic or miraculous, and as a result, while I managed to push through those barriers, even in sleep, my apprehension, indeed my terror, was immense.

This experience in the snow felt very similar. Space, I saw with sudden breath-taking enlightenment, is not negative. The “negative space” artists speak so passionately of doesn’t exist. Space is a real, solid kind of stuff that gives definition and substance to matter. In fact, if space, the medium that surrounds everything, changed the ordinary boxwood in the snow before me into a burning bush of miracles, what couldn’t it do?

Now, I must admit that contemplation of snow-covered shrubbery and buried cars and yellow street lamps, among other things, in sub-freezing temperatures has never been my favorite way to spend an early morning, yet it was a long time before I went indoors. When finally, rubbing my hands to warm them, I made my way to my computer to jot down some notes, I put my fingers out and, was immediately taken by the fact that my hands went outwards into space! The very sight of the keyboard elevation made my heart ache. What could be lovelier than the fact that keys themselves protruded above the keyboard? The words were palpable and delicious, not just with possibility but with reality: outwards, protrude, elevate, above. My typing fingers — they hovered in a tangible space over the keys, and I could see that there was a space between my fingers and the keyboard. Indeed it was a small miracle the way space gave form to those small squares, indented just slightly to fit the pads of my fingertips! All this was too much for me and alone in my room I found myself laughing aloud. Suddenly, the entire world was friendly.

I went around my apartment. Look at this! Look at that! I couldn’t pry my eyes from things. Dish towels announced themselves, as their threads stood up, cupped and rounded by space, each one loved into being by the fact of the empty air that surrounded it. Folds struck me as the most beautiful objects I had ever seen. Folds in terrycloth fabric differed utterly from folds in other fabrics. Even paper bent around an angle, embracing a fold, allowed sculpted space on each side to nearly bring tears to my eyes. Who would have thought that material, bent, could become a form of such magnificence?

And on it went. Doorknobs yearned, reaching out from doors into space. Bookshelves provided welcoming recesses, intimate and implicit with corners, as if saying, Come in, we will protect you. There were delicious concavities in every spoon! My circuit of the room over and over would have been ridiculous, had not everything been so lovely, and so thoroughly devastating.

Snow-covered bushes computer keyboard, a hand extended into the air — I understood in an instant that it was space, this lovely positive space, that sculpts the entire world, just as a sculptor carves stone. I knew then that it is only because most people get so used to depth perception all their lives that they lose all ability to perceive the beauty of space, to see how much space quite literally embodies.

Later the vision faded and as my eyes relaxed, my ability to see “3-D” was lost. But I still remember, towards the end of the experience, how as I looked into an empty wastebasket I was bowled over to understand that it had a rounded interior. The sheer “interiority” of it, the fact that the space inside it implied roundedness so matter-of-factly that I did not have to feel it to know this– why hadn’t I understood any of this before? It struck me as a terrible failure and yet the most transcendent discovery of my life. I knew then that if the world was charged with the grandeur of anything, it must be a positive, optimistic Shaper of things and that this Shaper is the world’s, the universe’s, Creator, which we instead call, as if it were nothing, “empty space.”

Could it be possible that most people will never have an opportunity to experience such overwhelming love for spoons and doorknobs and computer keys or even for hands above the paper or every possible human nose that sticks out into space? If so, it might even be the reason we humans have let ourselves destroy our environment, the most precious matter in the Creative Space around us.

Because we did not understand how space is our Creator, we have destroyed it and ourselves in the process. How could we have done otherwise? We did not know because we could not see. And if we could not see, how could we know the truth: that Space is Love that creates the world and makes us and all matter beautiful.

Art in Progress

I did this chair tonight with drawing  Vine charcoal I made in the grill. I peeled wild grape vine  then roasted the pieces in wired-together tin box pierced with a nail to let out the gases, for an hour..Inside after that was nice black vine charcoal!

Chair drawn with Homemade Vine Charcoal

 

 

 

 

 

 

 

 

 

 

 

 

 

The Second piece is my drawing in progress of which I will try to post a few stages..I have not come anywhere near to finishing it! Nor do Have any idea what it will look like when done!

#1 in Progress Art

In progress #2

Drawing in Progress#3

 

 

 

 

 

You Can’t Really Change Your LIfe, After All, Can You?

You Spew Poison into the World
You Spew Poison into the World

 

Of course you can’t change your life. Your “giants go with you wherever you go,” as Ralph Waldo Emerson wrote many many years ago, and it is still sadly true.

 

I left Connecticut, thinking I could escape, at least the hospital torture, but I cannot escape the voices that hate me and the demons that I carry with me, the fact that I burden the world, poison it when I exist in it, and that wherever I go I leave a slime of pollution and hatred..I cannot help that. It is a genetic flaw, no matter what good I try to do, the generosity I practice, the kindnesses I have done and preached, it all goes for naught in the end, when the poison leaches from my marrow and through my skin and permeates the world. People feel it then and run away, screaming…

 

I know this and feel it. and I cannot take it any longer. I have had it. Lord knows I have tried and tried to obviate it, to deny it, to remove the stain or fix it, but it has never worked. I am done. I can’t do it any more. It is over. I cannot deal with the voices and the evil that I am and cause any longer. It is so clear to me that others want this end from me too, because although they talk a good game about help and programs to assist me, they actually refuse to make them available to me, and deliberately– DELIBERATELY —  turn a deaf ear when I overtly say, I NEED HELP NOW…How much more obvious and clear spoken can I be?

I will NOT beg for my life or my skin. No. I do not deserve that. And if not one wants me alive or intact, then there is a reason for it…and I know what it is, as I have stated. So if I get the message that “this is it” today, at my appointment again, that We HAVE NOTHING FOR YOU, that YOU ARE ON YOUR OWN, that “we do not really care what happens”. then it is OVER…I cannot care for myself, the devil, and I know what must be done…

I have done all I can, I really have. Do not try to tell me I haven’t tried for 62 years as bravely and carried on ALONE as I could possibly do it and be. But I cannot do it any longer, I am sorry, But this is it. Either PROVE to me that YOU CARE THAT I EXIST AND DO NOT WANT ME TO DO…whatever.

 

No , in fact YOU cannot do anything, any of you out there. Frankly. This is strictly between me and the folks here tasked with making sure I am safe and it is clear that I have poisoned all of them already, I have used up my quota of caring and assistance and that is that. It’s gone. It’s over. I’m gone. GET LOST. YOU BAD RUBBISH. We have had it with you. You are worthless shit.

 

Goodbye.  I don’t know what will happen to me. But I can’t do this any longer.

Poem about Radical Forgiveness

 

Forgiveness or anger? Its your choice....
Forgiveness or anger? Its your choice….

TO FORGIVE IS…

To begin and there is so much to forgive

for one, your parents, one and two,

out of whose dim haphazard coupling

you sprang forth roaring, indignantly alive.

For this, whatever else followed,

innocent and guilty, forgive them.

If it is day, forgive the sun its white radiance

blinding the eye;

forgive also the moon for dragging the tides,

for her secrets, her half heart of darkness;

whatever the season, forgive it its various assaults

— floods, gales, storms of ice —

and forgive its changing; for its vanishing act,

stealing what you love and what you hate,

indifferent, forgive time;

and likewise forgive its fickle consort, memory

which fades the photographs of all you can’t remember;

forgive forgetting, which is chaste and kinder

than you know; forgive your age and the age you were when happiness was afire in your blood

and joy sang hymns in the trees;

forgive, too, those trees, which have died;

and forgive death for taking them, inexorable  as God; then forgive God His terrible grandeur, His unspeakable Name

forgive, too, the poor devil for a celestial falll no worse than your own.

When you have forgiven whatever is of earth, of sky, of water, whatever is named, whatever remains nameless

 

forgive, finally, your own sorry self, clothed in temporary flesh,

the breath and blood of you already dying.

Dying, forgiven, now you begin.

 

by Pamela Spiro Wagner in “We Mad Climb Shaky Ladders” (Cavakerry Press 2009) also featured in “Divided Minds: twin sisters and their Journey through  schizophrenia.”

Beyond Recovery: Stage Five

I want to reblog this brilliant post by Anne C. Woodlen and then i will add my own editorial comments if i can in a later post or edit. In the meantime, i think it speaks for itself and says just about what i would want to tell a lot of young people newly diagnosed with bpd or did or add or even bipolar disorder and getting on disability, preparing for a life “in the system” – it sucks and it isn’t worth it unless you are floridly psychotic. And even then, don’t believe what they tell you about antipsychotic drugs. There ain’t no such medication, only sedatives that may or may not quiet things down temporarily. The only way out is through, if you can do it with a wise and caring guide and community. Don’t get stuck as i am, on multiple antipsychotic drugs, addicted to them so that getting off them only means you get more psychotic than ever. Psychosis need not be a lifelong problem, but it certainly will be if you keep taking high doses of the drugs and never explore other options.

Behind the Locked Doors of Inpatient Psychiatry

Hello,

My name is Dustin and I live in Michigan. When I was seventeen years old my mother put me in a psychiatric hospital called Forest View. The abuse I felt violated me to the core! I felt like I was being raped having to submit to all the rules, the bullying and the emotional abuse. To have your dignity removed when you are an innocent patient and just want genuine, kind, gentle care, and get unprofessional jerks who you can tell are fake and just care about getting paid is a horrible experience.   If anything it only caused me more traumas with the trauma that I already had. I am now twenty-two years old and live on disability while also living my life as a hermit because now I am afraid of people due to the awful treatment I endured.  I was diagnosed with Borderline Personality Disorder by a REAL…

View original post 856 more words

Poem of Grief: When I Lose You

WHEN I LOSE YOU

 

When I lose you,

will you remember the leaves

of my brown name?

 

Not like an oak, which clings

snow after snow

 

but like the poplar

spilling her yellow dress

to the insistent fingertips of fall

 

The mother of grief

is a kind forgetting

 

and I tell you now

that I will forget everything

I will forget even you, beloved

 

Remembering light

like a leaf stilled in limestone

 

who would have thought

we could weigh so little?

Dreamrly’s COLLECTIVE Dream Art Magazine Has Launched

Kelli in Fractured Colors
Kelli being Drawn by Artist, in Fractured Colors – a blind contour study filled with color

I received the announcement below from Kayla Bowen today and thought I would pass it on. Dreamrly’s COLLECTIVE magazine is available either in print on demand or in a digital format. While I am one of the featured artists / poets, that is not the only reason I publicize the launch. I believe that dreams speak volumes, both to us and about our selves, and if we learned to listen to them, we might learn a great deal…

COLLECTIVE 2014 Launch Edition is Now Available

Launch edition 2014 features 108 full color pages, including:

  • Submissions from 40 contributors from all over the world
  • Three distinct galleries of visual art work
  • Interview with archetypal dreamwork analyst Laura Smith
  • Collaborative dreamwork feature with blogger Rita Kowats
  • An excerpt from Painted Over White, a novel by Katie Abrams
  • An excerpt from The Magic Pattern screenplay by Maria Isabel Pita and Dr. James Kroll
  • A complete section of poetry

Head over to www.collectivedreamartsmag.com to check it out!

You’re Invited! COLLECTIVE Launch Event

If you are in the Nashville, Tennessee area, consider coming out to join us Sunday, April 6 from 2 – 4 pm at Art & Soul on 12th Avenue.

 Copies of the magazine and launch poster will be available for purchase. We’ll have snacks, networking with other dream and creative arts enthusiasts, two interactive dream art stations, and an opportunity to see the cover art installation and meet cover artist Wayne Brezinka in person.

Do you have questions about the event or need more information? Email editor@collectivedreamartsmag.com.

Also a new Dreamrly/COLLECTIVEARTS contest:

“Fall Awake” Poster Series Campaign

COLLECTIVE is launching a poster series to raise funds for the magazine and to raise awareness about dream work and the visual arts.

The launch poster is available now on the web site.

COLLECTIVE is also hosting a poster design contest to select three additional poster designs to complete the series. Winners will receive $50 and 5 poster prints of their design.

Are you interested in submitting your design for the series?  Learn more.

About Sacrifice and a Poem : Making Things Holy

MOSAIC

 Mosaic: a word that means from the muses, from Moses and a work of art created from broken fragments of pottery, stone or glass.
 

Even the first time, surrender was not hard,

though the grownups and mothers

with their drinks and swizzle sticks

undoubtedly thought it so when you volunteered

your only present that 10th Christmas

to a younger child who wouldn’t understand

being giftless at the tail end of a line to Santa,

nor your inherent sin in being born.

Such generosity should have stayed

between your concept-of-God and you,

but grownup admiration (you could not hope

to make your act unpublic) sullied the soap

of any generosity’s power to cleanse you.

Other atonements followed, only one

almost perfect, being perfectly anonymous

spoiled by an accomplice’s later telling.

Perfection? You never made that grade,

your terrible love for God demanding all life

from your life. No one told you, “Live a lot,”

not in words that made it matter, though

they doubtless counseled, “Live a little.”

You were always in school to be perfect,

never knowing that life is a classroom

where one learns to love flaws

by throwing bad pots, to shatter

them with careful hammer,

assembling beauty from broken things.

I do not believe I posted this poem here before. I may have but I doubt it as I was going to publish it in a print journal. Instead, I never sent it out. So instead I choose to “sacrifice” it here. (meaning: If i publish it online here I cannot do so in a print journal…so this is for you, folks!)

I am going to tell you about the child I was when I was very small, as small as I can remember. The first thing I remember about myself as a self, was…well, what do I remember? This is hard. For one thing, while I am down to only 5mg of Abilify, I still take 160mg of Geodon, but more important I still take 200mg of Topamax, an anticonvulsant that has known adverse effects on memory and cognition. Whether it actually interferes with what I can recall from childhood or not, I could not say…Perhaps ECT did that, 16 plus 5 sessions of ECT could have done a number on my brain, especially as I had active neurological Lyme disease at the time. The Lyme-literate neurologist advised strongly against ECT, but the hospital psychiatrist forced me, at least through the last 8, after I refused to go back, by getting a court order and drugging me on so much Thorazine I had no will.

Ah, but “They,” the faceless They of Authority, They say that ECT affects  only short-term memory. Well, then, I guess just being 60 years old and having gone through trauma after trauma in the present decade alone surely could have wiped out memories from a half century ago and before. Whatever is the case, I must now scour my brain to recall what I thought I could recall easily.

Marjorie M, an old friend of my father’s, related a significant story recently — about me at age 6. Given our bedroom when she stayed with our family to recuperate from surgery, while my twin sister and I camped out somewhere else in the house, Marjorie was relaxing in my twin bed, alone, when she was surprised by my little face in the doorway. “Hi, Mrs M,” she tells me I said. “Why, hello, Pammy. How are you?”  I looked at her with concern. “Are you all right, Mrs M? Are you lonely? Do you need anything?” (or something to that effect..) I am astonished that even at age 6 I knew I needed to “do this,” although I think that my mother, who disliked Marjorie intensely, was probably ignoring her and I suspect knew it even then. But Marjorie says she fell in love with me at that moment. She certainly never forgot the incident. Bless her heart…

I forgot it, likely I never knew or understood its impact. Given that I was six, I had already made the decision the year before, when Martha was born and I was five years old, that since I would never have the older sister of my own dreams, I would instead have to be the older sister I dreamed about for Martha. I made myself the promise to Martha, the day she was brought home from the hospital, that I would do everything in my power to be in Martha’s older sister the OS I would have wanted.

In all our childhood photos, until the year I turned 14 and stopped permitting photos to be taken, you see two things: I am almost always featured next to Martha, with my arms around her or somehow touching her, protective of her, and my twin sister is with the dog or otherwise occupied. Always. You might not be able to tell which twin is which from our facial features, but you can tell us apart from that. One of us is with Martha, and you know I am that twin for certain.

It is the greatest loss to me, the worst thing, the — I can only say this: I am not a quitter, but I was unable to complete that most important of assignments because of what happened to me in high school, whatever you want to call it. I either became ill, or troubled or had too many problems…whatever it was, I simply could not function well enough to do all that I promised myself (and Martha) I would do for her. I could not BE the person I needed to be, the functioning adequate teenager, in a good enough way to be a good enough older sister to her.

For instance, just take the older sister/younger sister Q and A that ought to have taken place but never did after I was 14. My own menstual periods took me by brutal surprise. In addition, I never did learn “the facts of life”  (ie sex) as we called it in those days, not for real, not so I understood them, until after college. I vaguely knew the “birds and the bees” but not really, not so I understood the fundamental mechanics of sex at a time when most teens were experimenting with relationships for real. (Not me… I went to an all-girls high school and even though it was not necessarily true for the other students, for me, sex was never on my mind, I never understood the urge or the drive, not then and frankly not ever…) Given those facts, you can see that the OS/YS tête-a-têtes about sex and dating etc just were not going to happen. I didn’t know enough, one, and two, even if I had, I was unprepared to talk about anything so intimate with anyone.

As it turned out, though, Martha had plenty of friends and soon clearly found people to talk to when I could not. Thank heavens, because if the roles had been reversed, she could have taught me plenty! Only they could not be reversed, because I was the OS and she was the YS and things had to stay that way… I think to this day, though she doesn’t say it in so many words, she misses, if not resents, losing the OS, the me she once had…She misses surely the OS promise she knew I made to her from the outset.

Oh, Martha knows it wasn’t my fault. Life is life and shit happens. But she misses me, the Pam that never quite panned out because of everything that “happened” after I turned 14, 15, 16 and then it went on and on and on…She reminded me recently that even before I was taking any medication I told her that life was a minute by minute, hour by hour, day by day struggle just to survive…and I was only 24 or 26 or…This horrified her. To this day she can scarcely bare to recall my telling her.  Or of seeing me catatonic in the State Hospital. She left crying and I think could not bear to visit again for years…

We create our reality, people tell me. Our thoughts are very powerful…If so, I created from a very young age, a very harsh reality, one where in cahoots with a punitive God, I had learned over the years I had to be selfless to the point of self-obliteration, as well as nearly mute. But not so mute as to be noticeable…because if you were noticed then you were not completely self-less. (I told you it was a harsh world…) I had to speak just enough so as to NOT be noticed, but never about me or my concerns. ONLY about others…and then listen to their problems ONLY. I had to be a pair of ears pinioned to the wall. Wear drab no-color colors, unnoticeable. Fade into the woodwork, but only in a way that was unremarkable…As soon as someone noticed that I was fading, it was evil! and I had to add just enough color to fade into the crowd anonymously yet again, self-lessly.

No wonder my handwriting almost disappeared into invisibility. (I would have willed my fingerprints away if I had been able to!) Can you imagine my mortification, and the self-mortification I had to practice when bank tellers noticed the minuscularity of my signature and made me sign checks a second time? They NOTICED my attempts to disappear, and in doing so, made me appear loud and big…which was bad. So the voices took it out on me, making demands that had to be answered and hidden in turn.

Why am I writing about these things? Because despite the pain it has caused me, I still believe in self-denial. I believe in self-lessly doing things for others, and in NOT being the center of our own universes ALL the time. I think a good bit of doing for and thinking about others in THEIR universes is good for the soul, so long as they do not abuse you. And I do not believe that others need to know everything good that we do. I do not think we need to broadcast every good deed on Facebook or to our friends so they know what good people we are! So what if it remains anonymous, or between God and you? Maybe even God doesn’t need to know it if you do something for someone else…and that someone else doesn’t need to know who did it either.

Live with  the anonymity. You can do it. You can be self-less once in a while and not die. Your self is strong enough tolerate not telling the world everything you do for others…Trust me. You do not need kudos, confirmations or smiles for everything you do. You just need to know that someone else is better off because you did something or gave away something you could have used, but decided to give it to someone else instead. You sacrificed something. Not that you gave it away because you could not use it but because someone else needed it more than you did.

Try it, a little sacrificing especially in the United States is a good thing to learn. But make it real, don’t do it falsely. Giving up time or giving away something you don’t use or have any need for is no sacrifice. Sacrifice: from the Latin, sacer, “holy” plus facio, facere, “to make.” Something is only a sacrifice, something is only made holy, if it is a real loss and a real gift at the same time.

Trauma and Connection: You Need Not Be Alone

When Monica Cassani posted this video (see below) on her wonderful blog, BEYOND MEDS.com today, I was not sure I would watch it, mostly because I often do not have the patience to watch videos, no matter who recommends them. (Sorry about yesterday’s recommendation, an hourlong one no less, but it is vitally important to me and my topic…I still highly recommend it, if you cannot read Anatomy of an Epidemic…). Nevertheless, something about a video on treating trauma, perhaps the face of McElheran on Youtube, perhaps just my mood at the beginning of this day, impelled me to click on the little triangle that started it playing. I was pulled in almost at once. In fact, I was soon in tears, because McElheran may speak to us all, but most importantly she spoke to me…her words on trauma included me, personally, for once.

That she did so, moved me beyond words, because at that moment she validated my own manifold experiences of trauma, which were mostly NOT of potentially mortal events, even if I may have believed them to be so (when paranoid or psychotic). I will embed the video here, so you can watch it now, and come back to my blog post afterwards if you so choose. Or watch it whenever you like. It is — truly! — only 16 minutes long, and very compelling, so do not worry that it will take a lot of time.

Something about what she talks about reminds me that “Nothing human is alien to me…” We are all capable of everything, and anything, given the proper circumstances. Her compassion for human behavior is astonishing and moving beyond words.

I need to say this because no one who “knows me” thinks I am “capable” of things like calling people such vile names as those I called the aides and nurses regularly at YNHPH, or of stripping and defecating and smearing feces without even thinking or considering the consequences… But those are important words: “without thinking” and “without considering the consequences” because they indicate that I was behaving wildly impulsively, as indeed I was. Think about the situation: Six to eight people, some of them security guards (self-professed former police officers) had just violently and brutally assaulted me, thrown me onto a bed, held me down (causing physical pain to the point that I screamed in reaction) and pulled down my pants, giving me three intramuscular injections into the buttocks, then holding me down some more until they felt “safe” to let go…(One of them actually telling me they would press charges for my kicking her in the stomach while she was restraining my knees!)

Once i was freed, I made a dash to get out of the room, wanting to “do laps” around the “square” hallway that gave the Washington Square 2 unit its name. No deal. They physically prevented me from leaving the small single room, that had nothing in it but a hospital bed and tray table. I recoiled, enraged and manically in need of doing something, anything! Suddenly, I felt my bowels engage, roil, want “to go.” But the bathroom was down the hall…No matter, what the F—! Who gives a shit, in fact.

Without thinking a second thought about it, I simply pulled down my pants, squatted, and unloaded on the floor, to not so silent on-lookers astonishment and incredibility. Then I removed my clothing altogether. But another WTF moment seized me, then. The steaming pile of sh-t was there, and suddenly I “knew” what to do with it…and I did not give a sh-t that this meant using my hands or getting it all over me or anything. I just didn’t give a flying femtogram. I do not know why. I didn’t even smell anything. I just picked up handsful of the feces and smeared it across the walls. But not blindly and wildly, no, I was writing something, I remember now, I wrote something on the walls with it, though I do not know what any longer. And I do not think anyone took the time to read it. I do not believe anyone bothered to notice that I was not merely smearing but writing in shit...

The point is, I did this as a response to trauma, small as you might say it was. I felt traumatized. I felt brutalized. And I felt and was out of control as a result. This is not to say that my impulsive behavior served any purpose other than venting rage and sheer revenge at my abusers. It certainly won me no friends and no compassionate understanding from anyone. It could have, someone might have understood it for what it was, and seen that what they were doing to me was in fact brutality and  traumatizing…They had after all diagnosed me with PTSD, so WTF did they think they were doing?

It doesn’t help, frankly, that “Dr Angela” believes that they were “on my side” and “doing their best” and “actually helping me” all along. I do not agree. I do not believe that. I think they were hidebound in their determination to break me, and if they could not see that they were perpetuating harm, they should have.

Okay, okay, okay Pam. Calm down. Calm down. Remember you are practicing forgiveness, not worrying the sore into an infected mess! 8)

This is hard. It is so difficult to forgive and let go of harm that no one admits to having done, one, and two, claims was actually for my own good. To help me!

Bull feathers! I still have exquisite backside piriformis muscle pain when I move in certain ways or even sit down on my right hip. And if I take off a T-shirt with the usual crossed arm movement, it causes agony in my deltoid muscles from the injections they gave me there too.

But forgive and move on, forgive and move on…I need to take a deep breath. Think about other things. Get ready to go out for coffee as I have made a date with an old friend of mine I haven’t seen since that debacle at the Institute of Living last winter. We always have great talks. It will be good to see her!

 

Yes, I will leave this on that note. The fact that I do not isolate myself, but that I have lots of friends and do things to keep myself busy and fulfilled and purposeful in life. Trauma and memories and flashbacks of trauma may still get me, and they get me in the gut a lot, but they haven’t got me completely over a barrel the way they might have. There was a time when I was more isolative and friendless but not any more. Not anymore.

Too Many Anniversaries and Too Many Memories

Eemie on Bed

One of the anniversaries is my little Eemie’s death last year, at age 17. She was only about 14 in this picture, maybe a bit younger. But she never looked much different from this. Even the day she was “put to sleep” the vet thought she was a very sick 5 year old and not the elderly kitty she really was…She was my all time favorite cat, but i won’t try to replace her, or get another. I cannot do it, and will not try…

Pam and Joe 06 at Lahey

This  photo is of Joe Cornelio and me in 2006, just after he was diagnosed with ALS,  Lou Gehrig’s Disease, which would finally kill him, or complications thereof, two years ago today. I stil miss him dearly.

ERICA Screen that Joe sees

At the height of Joe’s illness, when he was completely paralyzed except for his eyes, and could not speak or move, he was able to use an eye gaze computer known as ERICA to speak with. ERICA registered the glint in his eye and allowed him to spell out each word by looking at the letters of the alphabet, which you can see on the screen in the photo, and then he could ask the computer to speak what he spelled by looking at the “speak” function. It was laborious, yes, but it worked well enough that we could actually have skpye converations by phone when I could not get in to see him in person, and I would set up my computer by my paintings and do some artwork by “videophone” so that he could watch me work while we talked.

Joe using ERIKA

This is  Joe — weird how I never saw the changes in him in life but always saw him as “my old Joe” except in these photos — using the ERICA.

Pam and Joe in HFSC smiling

Pam and Joe, smiling at one another…

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The other anniversary of this month is that three years ago, I was sadistically restrained (the first of several such incidents) on April 24th at Middlesex Hospital, absolutely traumatized by it and have not forgotten it yet. I tried to get redress, and we had JCAHO go in to investigate, but it did no good, because the Joint Commission largely doesn’t care about how often general hospitals use restraints and seclusion on patients in psychiatric units and doesn’t even track their usage. Try and find out about it. It is impossible. They track use of R and S in psychiatric hospitals, pure and simple, that is to say, State Hospitals, and private psychiatric hospitals, but not in general hospital units. So what good is that, I ask you? Most people who have severe psychiatric illnesses (chronic) are not hospitalized in this day and age in private hospitals but on psychiatric units in general hospitals, where the treatment can be tantamount, as I know all too well, to what the UN in March called torture.

Finally I was going to upload a bunch of photos of my tiny apartment but in one fell swoop I erased everything in my iPhoto library, including all the new photos. and, well, that was that! All I have left is whatever was saved in the ipad Photostream, which was precious little when it comes down to it. Stupid me!!

So today is the anniversary of Joe’s terrible death and I am trying not to think about that and all the other anniversaries coming up…It looks like it is going to be a bright sunny day here in Connecticut so I will try to take a walk and maybe do some artwork if I can get up the energy to do so…

Art Trading Cards at Yale Psychiatric Hospital…plus

These are the trading cards I made at YNHPH…each is only 2.5 by 3.5 inches. I think most need little explanation. I originally offered them for sale, though I usually just give them away, until i read about the new tradition (started in 1996) of artists actually trading these cards and never selling them. So if anyone would like to send me a card they made, in the proper proportions, 2.5 by 3.5 inches, i will send you one back. No requests for any specific cards please, as many are already spoken for or given away. You can ask for a specific subject but no guarantees. B)   That is an emoticon for me in  glasses with a smile!

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I also wanted to repost these two pictures for staff members who wanted to see them…finished. The first has been renamed and is now bound with light brown origami paper on the edges so it is finished and no longer rough.

Reflection on Room 101 in the Ministry of Love, it is approximately 5 feet by 4 feet.

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The other used to be called In Her Hands, and still is, but is also clearly a version of the well-known tradition of Black Madonnas as I ought to have recognized all along. but was too dense in doing my own thing to see…

2.5′ by 3′ approximately, with built on papier mache frame (work is made of papier mache, collage, painting and the kitchen sink…)

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BLACK MADONNA

At Yale Psychiatric Hospital: Respect, Dignity and Kindness

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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.

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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.

Art created at the Torture Chamber called the Institute of Living at Hartford Hospital

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I was a prisoner at Hartford Hospital’s Institute of Living’s Donnelly 2 South from January 10th until February 7th, 2013, the day before the east coast blizzard, and I only “escaped” because the torturing doctor went on a four day vacation and the substitute decided that I was not actually psychotic any longer and did not need seclusion or restraints after all…and opted to let me go the very day I was freed from both.

 

Good thing too, because it was a Thursday and all travel stopped the very next day and for several days after that. The picture above is one that Shedana, RN liked very much. She said it captured her “physique” and while the flooring is imaginary, the unit was structured much as it is pictured. At least while I had a bed on the unit, with my door facing the med room and another bedroom opposite. Shedana was a “good egg” but of course it didn’t help when they decided to attack me in force and secluded me for two weeks and worse…But more on that later.

 

The first doctor I had merely convinced me to take, semi-voluntarily, a fairly stiff dose of Zyprexa. which I tried to do with regularity. I soon found, however, that far from being the miracle drug it had once been, mixed with Abilify and Geodon it induced a state of apathy and boredom. As if the Intake and Feeding drug, the drug on which I used to feel enthusiasm to learn and read, Zyprexa, simply mixed very badly with the Output drugs of Geodon and Abilify, such that I neither could read and learn, nor do art or write. In any event, this abysmal lethargy pushed me out of desperation to paint this, in oil pastels.

 

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After that, I simply started refusing to take the Zyprexa, and refusing a lot of other things…A great deal of abuse happened. But I did this picture before all my art supplies were confiscated for no reason other than punishment (you cannot damage yourself or others with soft oil pastels)

 

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Before I tell you some of what happened, without naming names, lest a legal case be made against them, as there might possibly be a chance to do, let me show you most of the rest of the art I did there, though one of them is unfinished and may never end up being finished, since it was hospital art and may stay that way.

 

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This one is an oil pastel, me with a dung beetle pushing a ball of shit around on my cheek…Says enough just that, doesn’t it.

 

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This one can be turned any which way to see all sorts of things buried in the picture. It was the one I started first and never did get to finish. What I can point you towards is the central object at the very bottom, which you can trace up to the blue figure and see what is happening. It should tell you something…The hand on the upper left is pointing at this process. Also, the exploding biohazard ball is part of it all, representing me, the all-polluting biohazard…But you have to look at the picture carefully. There is a Boat To Nowhere, and there are a couple of turtles, why, I don’t know…yadda yadda.

 

Finally, the very last time I had access to any art supplies, and I do not recall whether it was my last morning or some other time, I painted this one with oil pastels. I believe it speaks for itself.

 

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What happened was that they were routinely, literally routinely restraining me “for not following directions” as they would quite openly state. Four-point restraints, in a tight no movement position, for many many hours at a time, with absolutely no indication of how, just how, I might “earn” my freedom. Of course they wouldn’t tell me what I could do to “be good” because I hadn’t done anything to ‘deserve” restraints to begin with as they knew perfectly well. For example,. and this was typical, but it was one of the few opportunities I managed to document because they ha removed all my writing materials, illegally, but I forgot that I had a right to a crayon and paper until Feb 6th. That afternoon, I simply walked away from my seclusion room. I had had enough of them saying it was “merely a side room” not a seclusion room, then preventing me bodily from leaving it. So when I could do so without someone actually wanting to fight me, I walked away, and proceeded to enter the unit and walk down the hall to the end and look out the window, I took a deep breath, heard THEM behind me, and sauntered back to the proper end of the hall, the “lost end” where they kept anyone from seeing me or knowing what they were doing to me. Once I got there, they descended on me, the horde of the goon squad, some staff I knew, but most I did not. I did not bother to look at who was doing what to me. I simply lay passively on the bed, and put my arms out so they could do what I knew they would do. Tightly, they shackled my wrists out past my hips so there was no play in the restraints and I could not turn on my side or do anything but lie stiffly on my back. At the same time, others jerked my feet apart and just as tightly shackled my ankles to the lower corners of bed. Then came the coup de grace. They pinioned me on my side somehow, pulled down my pants, and injected me with three drugs: Haldol 5mg, Ativan 2mg, and Benadryl 50mg. Why, except as punishment I do not know. because I had, just a half hour before, been doped up on involuntary Zyprexa 10mg.

 

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

 

No, I did not. I didn’t threaten or harm anyone. I merely walked the length of the hall and looked out the window and then went back to my solitary confinement. But it was enough to trigger their retaliation, and that started at 1pm. I was not released, not even to use the bathroom or eat supper, no never even was a single hand freed to permit me to eat supper — until 7pm.

 

THEN, at 8:30pm, I became upset and frustrated because — well, I do not know now why, but I “threw a half a graham cracker at the wall” as I recorded later. And the goon squad descended on this dangerous patient again, not only with the strait jacket of four point restraints, but with the same 3 drug IM-in-the-ass cocktail.

 

This time, however, passive as I was as they trussed me up — and I said only, “For shame, for shame. You ought to be ashamed of yourselves, doing this to me…” — passive as I was, allowing them to seize my limbs and tightly shackle me yet again in truth I dared not resist, as that would only have justified their violence, and i already had my share of bruises. Bur I had come to my limit of the abuse i would silently tolerate. They could restrain and seclude me but they had up till now only silenced me in restraints because iu wanted to earn my way free quickly. THis time I didn’t give a damn. It was nearly nine o clock and no one knew what they had done to me. Everyone was getting their bedtime meds and going to bed without any understanding of what was going on. I was a stranger to most people on the unit, who had no idea I even existed. THAT was a situation that had to change. NOW.

 

After they trooped out of the room, stationing a 1:1 sitter at the door as usual, I stopped my merely silent and passive resistance and started to scream. I wanted to be heard. I wanted to scare people. I wanted them to wonder, Who is that person,. and what in god’s name are they doing to her? Are they torturing her? And I wanted them to ask questions of the staff that the staff could not answer. I screamed and I screams in desolation and despair, feeling like my life was at an end. The plan they had set up for me was impossible for me to live up to. In nearly 10 days I had not even earned my way to a pencil and my journal. Only to restraints and more restraints. I saw no way out of the hospital. So I screamed, long blood-curdling, heart-wrenching screams that I assume did the job of scaring all, as eventually they closed my door, much to the disgruntlement of the sitter who was forced to come inside with me and was no longer free to socialize. But not for a while. I kept on screaming until my voice gave out and I felt asleep.

 

The next day the substitute doctor freed me, I dunno why or how, but she did. and I thank my lucky stars as the staff doctor was a sadist and never would have. I have a lot more to say, but for now I am hoping to hear from a sympathetic lawyer who will take on my case for some reason for some purpose…Unlikely to happen. despite my bruised body and joints that are so out of whack I cannot sit indian fashion or cross my legs. Why won’t they help me or respond? I didn’t die, so they won’t earn a lot of money from my case, nobody gives a damn about mental patient abuse…

 

You really know when you are a third class citizen when you only MIGHT be worth more to them dead than alive.

 

 

Body Bagged, 4-pointed, Secluded and Tortured — All in the name of Treatment?

 

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The above is are just some bruises of many I received during my month-long course of “psychiatric treatment” at the Hartford Hospital’s Institute of Living, on the unit called Donnelly 2 South. In  Connecticut, the Institute of Living, first known as the Retreat, and once quite famous as a posh sanatarium for the rich and famous though this is no longer true, was first made famous by  Clifford Beers, I believe, who wrote about similiar torture he underwent there just a hundred years ago in the book, A Mind That Found itself.
 

After burning my face with cigars and cigarettes, I spent the last month in Connecticut’s well-known Institute of Living (yeah the dangerous 6th month was JANUARY not February but nobody thought to check my math) being beaten up and trussed like a pig in four-point restraints almost daily for many many hours. Why did they deal me this sort of treatment? Why? Because “You do not follow directions”.

 

I DID NOT FOLLOW DIRECTIONS so they beat me up and tied me, shackled me with leather and metal cuffs  to a bed for dozens upon dozens of hours.! Get that? I was disobedient, so they shackled me to a bed as an excuse for treatment!

 

After this experience, I LOST ALL FAITH in the ability of any institution to do anyone any good who has a mental illness or sickness of the mind, or any emotional disorder or whatever you wish to call it. I GIVE UP! I will kill myself if anyone ever tries to send me back to such a cesspit of a place. I do not care if it is appointed like the Taj Mahal. NO ONE who works there is uncontaminated by the evil infecting such places and they are ALL EVIL EVERY SINGLE ONE. I have NEVER been to a hospital where the people are kind and well meaning and where the treatment is actually kind and decent. Once in a  while a single person, such as the Middlesex Hospital occupational therapist  Christobelle Payne, may stand out in memory as being a rare human being of warmth and dignity and  caring, but otherwise, they all to a one fail the test of being decent human specimens and all fail royally to be even normally humanly responsive to suffering persons. They are in it for the money and a cushy job, and don’t you forget it if you go into a psycho hospital, DO not expect to get well there. Expect PILLS, and directions (ie ORDERS) that you HAVE To follow or ELSE.

 

Get out of there as quickly as possible, because your life depends on it. I am serious. DO NOT LINGER expecting care and treatment or to feel better no matter how helpful it might want to seem.

 

Furthermore. if you are a young person, do not listen to the sweet seductive advice that some may give you that you woul do well to go for “disability” and social security payments. THAT Is a load of total crapola and the worst thing anyone could tell anyone under the age of 50. I am so angry and broken at the moment that I cannot speak more. But if I can later on, I will say more to explain. At the moment, I have to attend to too many PHYSICAL bruises and to find a way back to sanity on my own, havin been driven to the brink of near extinction by one of the best known hospitals in this state. At the moment I am both rigid with rage and so confused and broken that I scarcely know how to continue, or whether I even want to. Why bother? Why bother? How can people be such  monsters, and in such monstrously powerful places and ways. I hurt so deeply and feel I will never trust an single person ever again when they say, Come let us help you. You need our help.  YOUR help? Like being raped, I need your F—ing help!

 

GO jump in a lake of snot is what I should say to all of you so called helpers. I’d rather die. Go F— yourself.

Am I Crazy? Hallucinations, Delusions or Consensual Reality

What is real? Is anything true and factual? Or are we all just deluded and mad as hatters? This is a serious question.

What I recall and what was written down in my chart about a certain four days in July 2012 are so different it is difficult to figure out whether my experience was fact in any sense of the word or, as “they”claimed, simply paranoid and delusional. Of course there is some truth in paranoia and delusion, since even a paranoid’s beliefs are based in feelings that arise honestly and from a foundation, I firmly believe, in true things sensed but unacknowledged. Feelings always have their own veracity. But whatever the philosophers may say about the fiction of facts, still there is, there must be, something more to the consensual world of what happens than mere perception.

I mean, either that security guard in the Emergency Department last July deliberately attempted to strangle me, or he did not. Either it happened or in some fashion I imagined it. It is that simple, isn’t it? Yes or no, red or green, one or zero. Like a digital configuration, there’s nothing vague about it: either it happened or it didn’t.

There are records. I know what the ones they wrote say, as far as they go. But how to interpret them since so little was written down, and unless my memory is so completely at odds with reality as to have confabulated the entire episode – which by the way, is what they claimed all along – how to explain the discrepancies when so much is not even mentioned. That they whisked my gurney into a seclusion room and assaulted me en masse is my version. In theirs, the room change is noted only in passing, and of the IM medication all that is said is that it was given “NOW”. Nothing else of the incident I recorded in great detail in my journal some days later, and raged about from the first day I was admitted to the day I left. In fact, I’m still outraged, months later.

I wanted to go home, they wanted me to stay. That I was abjectly terrified of being kept there meant to them that I was “paranoid.” I claimed I had no problems and had never been diagnosed with a psychiatric disorder. That was a problem for they had more power than I did as well as my lengthy psychiatric history on their side to prove I must be crazy to make such a claim. Worse, I was loud, demanding, and in my increasing panic, getting angry. They saw my screaming as a threat. Even though I was blind to what was going on, any onlooker could have seen that I could not win and in the end of course I lost mightily.

But let me go back towards the beginning.

It didn’t help that I had arrived at the ED by ambulance and immediately refused to have my “vitals” taken, asserting that I was “fine!” I then accused the nurse of just wanting to get paid for taking them. In short order I was whisked to the so-called “purple pod” where the psych patients were buried for hours until the on-call psychiatrist deigned to come down to see them.

“Here,” someone said, thrusting a hospital johnnie and a pair of pajama pants at me. “Undress and put these on.”

I looked down and saw that I was already wearing pj pants from another hospital. No one ever knew the real nature of what I wore — they simply passed for scrubs — and they were so comfortable that I kept them on day and night. “I’m already wearing pajama pants. I only need to change my shirt,” I said.

“No, you are wearing very nice blue slacks. Now, put on the pajamas, or do you want a couple of strong men to put them on for you?”

“Actually,” I sniped, “they are hospital pajama pants. I pilfered them from –“ and I named the hospital. But I made a show of undoing the snaps so they would see that I was going to comply. The last thing I wanted was anyone touching me or “helping” me undress.

Soon an APRN, came by and I thought, Wow, they are quick here, maybe it isn’t so bad being taken to a big hospital. Maybe I can get discharged from here in no time. Unfortunately, she was there only to do a 15 second “physical exam” that consisted of looking in my mouth and listening to my back with her stethoscope. Period. Pronouncing me cleared for a psychiatric interview, she rushed off to clear someone else. Then I sat on the gurney in my cubicle and waited. And waited.

I remember being cooperative for what felt like a long time. I tried to sleep, and I listened patiently to what was going on around me. I swore that I would simply hold my breath and bide my time until someone saw me, so that, calm, I could present my case and they would see I was safe and sane enough to be sent back home, not admitted or sent to some hospital against my will. But it was taking so long, it was taking hours for someone to see me, and I knew they were doing it to me on purpose. Did they think I, too, was drunk or on drugs just like the others here? I started to complain that I had waited long enough and needed to see someone. I was NOT drunk, did not need to dry out. Where was the doctor? There was nothing wrong with me, I did not need to be here. I wanted to go home!

Things started happening then. Memory fails me however and even the chart, which I just obtained a couple of days ago leaves out way too much. All it says is that I was uncooperative, then irritable, screaming and combative. Meds were “offered”.

I remember this: When I refused to take soul-deadening Haldol by mouth, they descended on me, wheeled my gurney into a solitary room and jumped on me, intending to inject me by brute force. In the struggle, a guard gripped my neck and compressed the arteries, strangling me. I tried to get the nurse’s attention, burbling through forcibly compressed lips that I could not breathe. But her response, attending only to her needles and not even looking at me, was an impatient, “You’re all right!” In a pulse of panic, I jerked away as she started to shove the first needle into my arm.

“Damn!” she cried as a rush of blood spattered us and the needle danced away from my skin. “Hold still!”

I’d hoped to get some respite from strangulation but instead of letting go of me, the guard reasserted his grip on my neck and pressed down harder. I felt the light go black as blood failed to reach my brain. Darkness descended. Sounds grew confused and dim. Suddenly I knew that I could die, that this was how patients had been “accidentally” killed during notorious restraint episodes in Connecticut. I did the only thing I could: I went limp, hoping the nurse would get the injections over with quickly and that the guard would not kill me before she was through.

One, two, and then, astonishingly a third needle punctured my arm. She wiped my deltoid muscle with an alcohol wipe then removed herself from the gurney. “All done,” she said, removing her gloves with a smack and she nodded, indicating the door.

With a cruel leisure, the guard let go of my neck, but he leaned down as he did so and muttered in my right ear: “That’ll teach you a lesson about bringing a JCAHO case against M— Hospital…” Then he and all the others strode out of the room, leaving me alone in what I had already been warned was a soundproof room where you can “scream all you want, but no one will hear you.”

In other circumstances, I would have screamed, soundproof or not, as the door was left open. But nothing was ordinary anymore. A guard –  thuggish bully, no doubt a reject from the police academy — paid to protect people, had just partially strangled me in revenge for – what? What had I done to him? My case against that other hospital should have meant nothing to him. But what was clear to me, trying to get a breath and calm myself, was that I was not only not protected in the this ED, I was in mortal danger. I could not scream or rage in outrage, I could not even complain or demand to see a patient advocate. My life was imperiled. Still panting, trembling, in shock, I lay in the semi-dark of that single room and prayed — not to any god, mind you, but simply for my life, prayed to get out of that ED alive. I promised myself that I would not say or do anything “wrong,” would comply with everything they asked from then on in order to survive the night. But it was a long night ahead of me and I had no idea whether or not the guard would come back and finish the job. I was so terrified my teeth chattered. I felt a hollow coldness inside me of unutterable fear. And there was nothing I could do but lie there and hope he did not return.

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I did not name the hospitals in the piece above, though I usually do, and I refrained from doing so because I do not know whether what I am going to write now is indeed true or not. But if it is not, then I do not want certain people being alerted to this blog post and reading it and taunting me with “Yehaw, we got away with it!” Read on, and you will see what I am talking about further on.

So as I said, I am in possession of my chart, the entire thing, 60 pp for a mere four day stay in the hospital about which I speak, including an approximately 10 hour stay in the ED.  In it, there is absolutely no evidence that anyone ever took me or what I had to say seriously at any time. Everything I said was dismissed as paranoid and delusional, grandiose, disorganized or confabulating. (BTW Confabulate does not mean lying, it means to unintentionally “fabricate imaginary experiences as compensation for loss of memory.” But whatever they thought I was confabulating I have not the faintest idea. Or memory. Alas, the chart says nothing of what I spoke about.)

What has completely upset the applecart is my own statement, written in my journal and elsewhere: “Why on earth would that guard care whether or not JCAHO was involved in that other hospital?” On that thought rests everything, because of course, he had to have cared mightily to have wanted to strangle me for it. Or did he? Did he care, and  in fact did he try to strangle me, and did he even say those words in my ear? I am serious.

 

You have to understand something: Once, years ago, I heard, or hallucinated, hospital nurses announce over the public address system in nearly the same words how they were going to “teach me a lesson” about — whatever it was I had done…and I knew I had heard it, knew I was hearing it at the time, except for the fact that I was on the phone with my sister at that time.  I held out the phone in the air so she could hear it too, but she told me she heard nothing, assured me that I was hallucinating. What I described was not only unlikely but so beyond the realm of the likely that she was certain  it could never have happened. “Its just your voices, Pammy,” she said, “you have to trust me, you are hallucinating.”

So remembering this, it gives me pause. For why would that guard care about JCAHO and that other hospital in the first or even the last place? What could it possibly mean to him? Security guards are usually hired from outside agencies so his over-involved concern with another hospital’s accreditation suddenly seems to me absurd.  And if he did not care, why would he have tried to strangle me? Oh, maybe he did hold me down too hard, and I felt that, yes. But if I could speak, then I know I could breathe, so I was not actually being strangled either.

Perhaps I was simply frightened? And could it be that in fact he never said anything at all? That I “imagined” those words, hallucinated them, and then continued to believe that I heard him say them and that he wanted to kill me, all the time since then? Could it possibly be that some of what the hospital personnel said was true — NOT all of it, but some part of it. That I was in fact hallucinating and delusional? It doesn’t make their behavior right. It doesn’t justify throwing me into seclusion and injecting me with IM meds when I was not a danger to myself or others. It doesn’t even make admitting me to the hospital the proper thing to do in the first place. But, but, but…if I have heard people say things, visible people say things that they simply have not said, when they have not said anything at all, and I know this has been the case, then it is, I admit, just possible that what happened at the ED this summer might be another instance of the same…It pains me to think this. It frightens me to think that I could have been so mistaken for so long.

But what’s more, I worry that I am wrong to believe I might be wrong!  That the guard DID say what I think he said, did intend to strangle me, and that I am giving him what he wanted: I am letting him drive me into believing I was/am crazy!

I do not know what to think. And I may never know for certain what happened. Not about this. However, one fact that I can corroborate in the record I am painfully aware I “knew” for months: I was given 3 IM drugs during that episode. Yet you only have to read my chart to see that I was given only 2: Geodon and Ativan. The third drug, Haldol, was canceled immediately after it was ordered. The records clearly state that only the Geodon and Ativan were ever administered. This is so striking an error of memory  that it too makes me think again about trusting what I was certain I heard in that terrifying room where they held me down and injected me.

 

I don’t know what to do with this…I don’t know how to handle it or deal with it. It doesn’t feel good, or give me any sense of relief. I dunno how I feel. Just shocked, I guess. And perturbed, because I don’t know what else I have experienced that never “really” happened.

A Mental Health Meeting of the Minds: Natchaug Hospital Administrators Get Gold Stars

This is the front entrance to Natchaug Hospital, a photo I cribbed from their Facebook page. I am trying to paint it, but that will take a while so for now, this will have to do…Hope I am not infringing a copyright. However, as this post is all about Natchaug it is good publicity too!

After I wrote my early September post “Open Letter to Deborah Weidner MD”https://wagblog.wordpress.com/2012/09/02/open-letter-to…chaug-hospital/  ‎about my stay at Natchaug Hospital in August, I received a phone message  one Saturday afternoon not long afterwards from none other than Dr Weidner herself. She left her cell phone number and asked me to call her back. Her voice was neither angry nor upset, quite the contrary, she sounded very pleasant. So, despite my heart’s clangor in my ears at the same time as it drove nearly into my esophagus with its nervous pounding, I sat down and decided to make the call “without further ado.”

“May I speak to Deborah Weidner?” I asked the voice who answered, intentionally using her first name, so she would not think I was calling on unequal terms, i.e. as a patient.

She responded, and addressed me as “Ms Wagner,” which made me feel better at once. Then, before I said a word, and believe you me, I was not going to be the first to speak in any event, she said (and I quote from a less than perfect memory here, so this is not verbatim), “I read your blog post. You are such a gifted writer. It was really a wonderful piece…” Or words to that effect.

I was both stunned and amazed. Certainly I was amazed this was the self-same “head honcho” who had essentially, so I’d felt in August, been against me at the hospital along with so many others in charge, the MD who had – I felt – given up on me, called me “a borderline”*** and gotten rid of me at the earliest possible opportunity. She could, back in August, so easily have tried to help, tried to find out what had gone wrong and make things better. But it seemed to me at the time that she had simply gone along with the general ill-will towards me and dumped me, no matter how troubled I still was.

Note that when I say, “general ill will” I mean exclusively “the management” — the doctors and social workers and APRNs…those who did the diagnosing and disposing. From the nurses and mental health workers I felt nothing but great support and goodwill, almost to a one (minus, of course, my abusers). Even of the nursing supervisors I found only that single really awful one…at least to my face.

But as for Dr Weidner, I’d felt that she too had decided to “blame the victim” instead of taking responsibility for the very real traumas, which certain “bad egg” hospital staff had inflicted on me…

However, be that as it may, it is all water that has sluiced beneath the bridge, and so as I said, I was stunned to receive Weidner’s phone call. I was even more astonished to perceive such humanity and even warmth from this woman against whom I had conceived such animosity and from whom I had felt the same.

Here she was not only praising my writing skills but speaking approvingly of a blog post that concerned my very negative month-long stay in “her” hospital.

We talked for a while. She may not have known it but I was trembling, both with anger and with anxiety. It took me some time to calm myself, to feel safe enough to answer any of her questions. Finally, she said what she evidently had called about to begin with. “I wonder if you would consider coming back to talk with me and a few other interested people here at Natchaug.  I would really love to speak with you.”

I was dumbfounded for a minute. But only for a minute. Then I found my voice, and as soon as I did, I responded with enthusiasm. “Yes, absolutely. I would love to do that. Thank you. I would be more than happy to speak to you and anyone else who would listen to me.”

“Thank you, Ms Wagner. We really want your input, we want to make Natchaug a better place and I think your insights can help us to do that.”

After we hung up, I was beaming. I felt so filled with light that my smile must have been big and bright as a beneficent Halloween pumpkin. I immediately went downstairs to the 7th floor to share the news with my friend of 30 years, a friend who had been appalled when I came home in August in such terrible shape.

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Well, that meeting took place yeseterday, Friday, at 9am. Brityn, my case manager drove me out to Natchaug, and I brought with me the oil pastel painting I’d done while there, the view of the nurses station from my room. I am donating it to the adult unit mental health workers’ breakroom, after Brian, the patient relations advocate, who is both intelligent and caring and an extraordinary listener, displays it somewhere publicly for a time.

When we got there, we were met by the director of nursing, John O, APRN. Shortly thereafter Dr Kline came along and we went into a little room off the lobby. I was a  taken aback at first when, while waiting for Dr W,  John and Dr Kline started talking with Brityn, as if she were the only person in the room, as if, “professional to professional,” they could ignore me, a mere patient once again.

This was unconscionable. I was the person with whom they ought to have been concerned, and instead they directed themselves wholly to Brityn. It also felt infantilizing. Why didn’t they even greet me or ask how I was doing since I’d left Natchaug? They could have at the very least made small talk with me. Instead, they chatted with Brityn, someone who is not only my junior by about 30 years, but with whom they’d had no prior interactions whatsoever and whom they didn’t even know. It was insulting.

I dunno. Maybe I was too sensitive. Maybe they just wanted to include Brityn…But it didn’t feel that way to me. It felt like they were talking to her as a way to avoid talking to me, a way to simply bypass chatting with me.

To their credit, however, when I mentioned it – “You know, I am here and I am a person too. You could at least include me in the conversation…” — they apologized. But even now I do not believe they understood the problem. They thought it was perfectly acceptable — since Brityn had driven me (I wonder how they would have behaved had I simply been able to drive myself!) — to treat me as merely a patient, a “charge,” and to treat Brityn as their equal, the other professional, the only one on equal standing with them. Well fork them…It cost me a lot to go up there, not even to talk about what they did to me. Do they really think I am OVER it? They ought to be ashamed of themselves.

But I will let that go as well.

Soooo, down to tin tacks, which turned out to be the golden glue of the meeting itself.

Dr Weidner, small and blond and –somehow I want to call her “open-faced” — she seemed not to hide a lot, had what looked like a genuinely interested and caring face, though naturally psychiatrists are trained to achieve this appearance. Nevertheless, I did trust her sincerity.

This time I cannot recall if she called me Pam, or nothing at all. I do not think she called me Ms Wagner, though.  I pointed out that since I understood that the post I’d written, the “Open Letter” had essentially “gone viral” in terms of the Natchaug Hospital staff itself, I didn’t feel I needed to talk much about what had happened in August. I had written all about it in detail. Or most of it…Mostly what I thought I should talk about was “How to make Natchaug a better place.”

I did that, and in fairly great detail. I will write a separate blog about all those suggested changes, and changes which would apply in spades to other hospitals. But for now, I just want to report on the meeting itself.

Dr Weidner seemed to take careful notes  and when I had finished I was simply “blown away” when she said, “Pam you have so much to tell us, and are such a good teacher, but there are only the three of us here today. How would you feel about coming back and talking to the entire medical staff? Your experience as a patient and your ability to articulate it would be just invaluable for many more of us to hear.”

Well, I almost laughed in sheer belief and pleasure. “Of course. I would love to. I do public speaking and would have no problem with that. Anything at all that I could do to make Natchaug a better place would be fine with me.”

Dr Weidner also wanted to know what they could have done to make my own stay less traumatic “from the start,” especially how they could have relieved or prevented my becoming mute for so long.

I told her that from the instant that the first episode started, when that nurse or whomever said to me, “Take your hands out from under the blankets!” I felt so betrayed, felt indeed that I was back at Hallbrooke being tortured by those two abusive staff members (who were actually reprimanded for their behavior) that I became mute at that very instant.

Would I have taken Ativan despite my psychiatric advance directive’s proscription against its use? Yes, had someone gently explained its use and suggested I take it to help my mutism, just a small dose, I would have at least considered it.

But no one presented  Ativan as an option…I do not believe anyone even knew about it. Except of course to force it on  me against my will during the Seclusion event I described in the earlier post. Not until Dr Cappiello insisted that I ask Dr Pentz to prescribe it, and that was only after I had been unable to talk for 8 days.

As for the mutism itself? They — Dr Pentz and some of the other docs and APRNs — insisted that I deliberately chose not to speak, that I could have if I wanted to. But in point of fact, I could not get myself to speak, I woke every morning with no “inclination” to speak and no felt ability to break that barrier…and therefore I truly could not speak at all. In fact, it took hours, and maybe two doses of Ativan before I was able to speak at all even when I did take it.

After a few more words of conversation, the meeting broke up and Brityn and I headed towards the car, with the expectation that we would come back again so I could speak to a larger group of Natchaug personnel.

So that was my reconciliation with Natchaug and I left feeling like a million dollars. Even Brityn told me it was the best appointment she had taken anyone to that week.

You know, my sole worry — and I felt a frisson even as we talked about it and my worries were not immediately allayed — was when I asked if I could ever be readmitted, ie as a patient. I know, I know, why would I even want to? Dr Weidner said she didn’t think I’d ever want to come back. According to her, that’s what I’d written in my blog post. But in  fact, what I said was that I didn’t think I would ever be taken back. I was considered such a PITA, why would they want me? And also because I could not see anyone for a doctor but Dr Andrei, and it seems dubious that she would see me. Why I do not know. But so be it. I liked her, never had any problems with her. But I must have done something wrong. This is twice that they have refused to assign me to her.

In truth though, 1) I have NO WHERE ELSE TO GO, no where else I could possibly begin to trust or feel safe, nowhere do I have even a history of feeling and being safe and 2) say that they do change, where else would I want to go?

In any event, since I can work with neithe Pentz nor the other doctor on the unit, because of “conflicts of interest” (i.e. he still has “feelings for me” from our days in med school together) that leaves only Dr Andrei, and I dunno if she would accept me onto her service. So, even if theoretically they would take me back – which didn’t seem at all certain, not from the vibes I got from Dr Weidner — I don’t have any idea who could see me if I were admitted.

(What the fork!  I would be stuck in a snake pit like Hartford Hospital’s Institute of Living only to be brutalized again. When push comes to shove and I might need or want to be re-admitted, frankly I wouldn’t expect the admitting MD Natchaug to give a damn, no matter how many times I’d spoken to people there and how much I might have taught them. As soon as I need their help as a patient,  frankly, I expect I’d simply to be abandoned to my fate somewhere else.)

Well, of course I will still help Natchaug,. How could I not want to help them? I want to help EVERY hospital in the state become as good as Natchaug and even better. But it sucks all the same.

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*** Finally I want to make a brief comment about the specific words “a borderline” used early in this post, because every time I hear this phrase it makes my blood sizzle. Not only is very insulting, it stigmaties. I may not have borderline personality disorder, but I know what is meant when someone calls a person “a borderline,” and it is invariably  takes the place of PITA, Pain in The Ass.

There is a difference, a huge difference between understanding the very real travails that a person with such a personality disorder undergoes daily, the emotional suffering that afflicts that person, and simply calling them names because you find them troublesome.

Empathy goes a long way, especially with someone who suffers from BPD. The idea of calling someone “a borderline” is tantamount to saying, “I suffer from YOU.” A disgusting statement if ever I heard one, one most often made by mental health professionals. Doctors who use the words, “a borderline” need 1) re-education in language and its nuances, but 2) and much more important, a re-education in COMPASSION.

Of course, that’s just IMHO…and who am I?

I’m Nobody! Who are you?

by Emily Dickinson

I'm Nobody! Who are you?
Are you – Nobody – too?
Then there's a pair of us!
Don't tell! they'd advertise – you know!

How dreary – to be – Somebody!
How public – like a Frog –  
To tell one's name – the livelong June –  
To an admiring Bog!

Memory is Fiction and Fiction, Memory

Where is Memory?

Memory is fiction. I  wrote that in 2005, believing I read it in the New Yorker somewhere. Memory is fiction. It’s not that we make our memories out of whole cloth; we believe we remember things clearly, but the mind is a funny thing and what we recall happened, and what “really” did are two different things. Of course, in the end, there is little way of knowing what is correct, unless the event was a public one and well-documented. Unless? Hah. Just think of one of the most public and most highly documented events of the 20th century, the assassination of John Fitzgerald Kennedy and try to come to some conclusion from the “evidence, the facts, about what “really” happened. The truth is, no one can tell you what really happened  because everyone’s memory is different, and in that sense even though the objective evidence supposedly remains the same, each witness interprets it differently, through a different viewpoint and a different political and sociological lens. So where lie the facts of “true memory” and where is the bosh of “mere fiction” in that public event, those historically documented facts? Answer that and I am certain there must be a big prize out there somewhere for you.

But I suspect the truth is that this notion of “really happened”  is just a big brainwash by those in power who have cornered the market on their own version of it. In truth (and these words all get so sticky here), if I believe something happened one way, and this belief has informed my life and behavior, isn’t that the most important thing about the event, more important than any theoretical “facts” of the matter? Given than no agreement has been reached about something so public that it ought to be obvious, Who killed President Kennedy? how can anyone tell me that an XYZ in my own little life that I remember clearly, happened rather in the fashion that they recall and not as I do? What gives their memories more weight than my own?

You can indeed turn it around and say Fiction is memory, and be just as correct, meaning that in all the stories we make up about the world reside parts of ourselves and our lives, that nothing is ever truly “made up” or completely foreign to our experience, however outlandish the characters or strange the events described . There is a truth behind the settings and deeds that derives from one’s center, making fiction a personal memory of the deepest sort.

People have asked how I could recall with such clarity events that happened 20, 30 or 40 years ago, even down to dialogue, the way I’ve written it in DIVIDED MINDS or prospectively in BLACKLIGHT, and all I can say is — aside from the fact that out of 40 years I remember very little all told, even though what I do recall, I recall with great vividness — that I feel I remember every event I recount as clearly as if it happened yesterday. There is no guarantee, mind you, if indeed memory is fiction, that I recall anything with factual accuracy, whatever that is! I can only claim to capture what memory remains of those years, to capture my memories, no matter how time has embellished or hardened them, or in fact hardened the embellishments.

As to DIVIDED MINDS, I remembered a great deal more than what I wrote, until the book project was finished, at which point I pretty much lost it all. Once it set the years down as “my story” I feel as if I mentally deleted all other remembered events as less important, therefore forgettable…I wish this hadn’t happened as there was much I used to and wished to recall. Perhaps I have earlier versions of my book without such deletions, on my hard drive to jog my memory, but it is as Annie Dillard, author of Pilgrim at Tinker Creek wrote, (I paraphrase) If you prize your memories, don’t write them down (because that solidifies them forever in a form that freezes out all others).

Nevertheless, not a word I have written either in DIVIDED MINDS or in BLACKLIGHT has been deliberately fictionalized. I remember each and everything that I have written about, though whether my memory be factually accurate or not is anyone’s guess.

 

As an aside, I know all too well how false memories may be unconsciously confabulated. When I lived at the Transitional Living Facility in Hartford in the 90s, the staff there and at the nearby hospitals were so intent on ferreting out “multiples,” the newest fad diagnosis, short for persons with Multiple Personality Disorder, that I am absolutely convinced they induced many if not most of the residents there to “remember” early childhood sexual traumas, incidents which they might never have “remembered” and which likely never happened. For instance, my friend Joe latched onto the “fact” that his father “molested” him — but the only evidence he ever gave for that was that he put his hand on his knee once while driving…Now, I never bought it, since it seemed a fatherly thing to do, a father putting his hand on the knee of a young boy! And Joe never once said that anything else ever happened between them. In fact, he always said that his father was a womanizer, if anything. Be that as it may, the residents were made to confabulate these false memories and this was a necessary prerequisite for the psychologists there to proceed to “uncover” the desired dissociative disorders, i.e. closet multiple personalities. I am telling you, it was a huge fad, and MPDs were coming out of the woodworks. I am convinced that many so-called multiples today, most of them, are residual from that terrible decade of the 90s, and they have not been able to let go of that diagnosis. Furthermore, no one, no doctor or therapist has been brave enough to deal with the lie that they were induced, even forced to buy into, and so the “fiction” is being perpetuated and their lives and no doubt others connected to them destroyed.

 

Forgive that tangent, but it is one aspect of memory — induced false memory — that does upset me, because it has destroyed so many lives, continues to, and no one is held accountable.

 

Nevertheless, for most and in most lives, those not deliberately ruined by multiple-personality-mad psychiatrists and/or overzealous psychologists, the “facts” whatever they may be don’t matter as much as  one’s memories, as I’ve pointed out. Certainly for me, I’ve lived my life through my memories, and the memories have been what has influenced me, affected me, changed me and made me into the person I am today, for good or ill.

 

I have some other thoughts on this, but it is getting very late so I must quit for now and go to bed…TTFN (ta ta for now).

In-Patient Psychiatric Abuse Can Be Subtle (and not so)

I will be rewriting this for my new memoir, but wanted to try out the episode here, in part, though I have not yet rewritten it…I have been rereading my many journals that I have retrieved from storage in preparation for really seriously writing this thing, and it was one of the first events recorded that I happened to dip into. It is in a relatively recent journal, but I was reading randomly and I just happened upon it. It very much upset me, as just as I read it, I remembered it very clearly. I had no amnesia, it was only that I have been in so many hospitals in the past 3 decades that I cannot separate out one from another, nor tell what happened where or when.

Subtle abuse? In fact, I don’t know that the episode I relate here is an example of subtle anything. I can only say that at the time I had no idea that it was abusive. I felt that perhaps I deserved it.  I had no idea that it should have been reported, that someone should have defended me, that anyone…Well, you will get the drift upon reading the following brief description of one incident, among the way-too-many that have happened to me over the past 5-10 years in Connecticut hospitals. All I can be sure of is that if hospital staff do these things to me, I am fairly certain that they must do them to others…In which case, that Hartford Courant article in 1998, “Deadly Restraints” which was supposed to have changed everything both in Connecticut and around the country in terms of in-patient treatment of the mentally ill, that article did little to nothing. I would say, in fact, that treatment has gotten markedly worse over the decade. Compared to my treatment in the two decades before this past one, I was never abused as much in the 80s and 90s as I have been since Y2K and 2000.

For once, what I write of here does not involve restraints per se, at least not immediately, but as you will see it involves abuse, physical abuse, just the same. I have transcribed this from my journal from a few years ago. I have edited it, but most of the edits I made were for clarity or to convert partial sentences to full ones, though in a couple of places I had to flesh things out more. But here ’tis, what happened to me at a general hospital I spent a fair amount of time in, in Fairfield County, where my twin lives:

“After a run-in with Karen again, I apologized and we had a decent talk. I took off my coat for once, went to Wendy’s communication group and did okay. Then I was sitting in the alcove talking with Mark about my dread at every anniversary of JFK’s assassination when a hullabaloo started near room 306 at the other end of the hall. It seems a woman was having a heart attack. I immediately felt the floor fall beneath me: I was to blame, my inattentiveness, my raucous, hyena laughter, my evil had killed her!

I knew that I needed to take my 4 o’clock medication for what little it would do, but no one called to announce them or for me to take them. My ears rang, booming! The air was full of blaming and criticizing voices, so maybe I didn’t hear, but I think they just didn’t call me. I rang the intercom buzzer at 6:45 and was told that Jamie, the medication nurse that night, would be back from supper around 7 o’clock. I rang back at 7:05 but he was still gone, so I waited another 15 minutes since no one told me that he had returned.Finally at 7:20 I pushed the intercom button to ask if I was supposed to skip all my 4 o’clock and 6 o’clock medications. They now said Jamie was waiting for me. But why hadn’t he called to let me know he’d gotten back from dinner? Slowly I managed to shuffle up to the medication door again, zipped to the mouth in my coat and balaclava hood, verging on stuckness, only to find there was no Geodon in my cup.

“So I don’t get my 4 PM medications,” I whispered in stunned panic, too afraid to simply ask for it.

“Nope” was Jamie’s only answer.

I was flabbergasted, completely stunned. My second prescribed dose of BID Geodon was what I’d been waiting patiently for ever since the patient in room 306 had her heart attack. After Jamie ignored me, giving me no explanation, I just turned, took my 6pm Ritalin, then dropped the DIxie cup of water and all the other pills on the carpet. In a daze, it took everything in me to start making my way down the hall towards my room again.

Then I heard footsteps pounding up behind me and suddenly Jamie was in front of me, blocking my way. “You’ll go back there and clean up the mess you made right this instant!” he bellowed and pushed me towards the med station. I stared through him, tried to walk away, but he blocked me again and again pushed me backwards until finally I gave in, relaxed and let myself succumb to his pushing. I didn’t walk though, I merely fell backwards to the floor, saved from injury only because he grabbed the front of my coat as I fell, and lowered me to the floor. I curled up in a ball like a porcupine, hoping not to be killed. Well, he was in a rage and forced my hands down, away from my shoulders, and unzipped my coat. Then he ordered me to get up and clean up the mess again — what mess really? A few pills on the floor, and a little water that would dry? I refused. I curled up on my side and closed my eyes, responding to nothing. He threatened me with restraints. At that, I gave up resisting, knowing resistance would give him the excuse he wanted. I let him pull my coat off my limp body. And I remained limp as he carried me to my bedroom where he dumped me coatless on the bed and thundered away. I was triumphant, however. No restraints! I’d figured it out. If you refuse to resist, if you don’t fight back against their power plays, they have no excuse to justify putting you in restraints. They cannot put someone who is completely silent and limp into 4-point restraints. What would be the point?

Nevertheless,  I was cold and felt exposed in only my T-shirt and jeans, and with no coat to protect me, nor others from me. So I got up and grabbed a sweater and started bundling myself into hat and  hooded scarf. Suddenly Jamie barged in again. I backed away and fell onto the bed behind me. In a fury that was unbelievable to me, he leapt onto the bed and pinned me down, knelt so his knees trapped me and I couldn’t move. Then he unbuttoned my sweater and tore it off me, ripped off my hat and scarf, then without a word proceeded to empty the room of any clothing that could possibly cover me, including my shoes.

This was too much to bear. But I said and did nothing in protest. How could I? I had no words, no sense that I had rights of any sort. All I did was huddle against the wall under a blanket and whimper, “I didn’t mean to kill her. I didn’t mean to cause a problem.” Jamie, who had left with all my things, stormed back in and angrily lectured me on how I was guilty of  “just wanting attention!” I wept silently. All I’d wanted that entire afternoon had been my 4:00 pm medication, and to be left alone to deal with repercussions of having killed the  patient in 306. I was too stunned to respond and could only whimper over and over, “didn’t mean to kill her, didn’t mean to cause a problem.” Still furious, but getting nothing from me and spent, Jamie finally left for good.  After a while, I looked around at the nearly empty room, and there on the night table was the pen Lynnie had left behind that afternoon. Jamie had overlooked it in his rampage. I had no energy to get off the floor, and no paper to write on, so I did the only thing I could, and  I began writing on the wall. “I didn’t mean to kill her, didn’t mean to cause a problem,”  I wrote and wrote. I wrote until I physically could not write any longer, I wrote until my hand gave out.

That was not the end of the evening, but it was the end of the interchange with Jamie, RN and it’s all I wanted to go into for tonight as it is getting late, very late and I needs must go to sleep.