PLEASE go to the embedded link to finish reading JULIE MAD BLOGGER;s following article, which was succinct and brilliant.
“The following is my commentary on a “fact sheet” from NAMI New York. This is some material from the URL http://www.naminys.org/nys/educational-materials/ Here, what you see in italics is what I have copied verbatim, directly off the NAMI page. Here and there I am replying, as I see fit, with commentary of my own, in non-italics.
Here are some important facts about mental illness and recovery:
Please note: Much of what NAMI tells you ain’t facts!
Mental illnesses are biologically based brain disorders. BTW, the “brain disorder” theory was disproven almost immediately after it was proposed. There is no scientific evidence of any brain disorder in those with the so-called major mental illnesses such as schizophrenia or bipolar. They cannot be overcome through “will power” and are not related to a person’s “character” or intelligence. The implication here is that these so-called “brain diseases” are permanent conditions that will not go away on their own nor can they possibly be transient or outgrown. This is false, as many are indeed temporary, or can be overcome by changing one’s life circumstances, growth, maturity, improved physical health, changing one’s environment, nutritional changes, or improving one’s relationships.
Mental disorders fall along a continuum of severity. Even though mental disorders are widespread in the population, the main burden of illness is concentrated in a much smaller proportion — about 6 percent, or 1 in 17 Americans — who suffer from a serious mental illness. It is estimated that mental illness affects 1 in 5 families in America.
Electroshock, variously known as electroconvulsive therapy, ECT, shock treatment, or simply shock, is the practice of applying 70 to 150 volts of household electric current to the human brain in order to produce a grand mal, or generalized, seizure. A course of ECT usually consists of 8 to 15 shocks, administered every other day, although the number is determined by the individual psychiatrist and many patients receive 20, 30, 40 or more.
Psychiatrists use ECT on persons with a wide range of psychiatric labels, from depression to mania, and have recently begun to use it on persons without psychiatric labels who have medical diseases such as Parkinson’s disease.
A conservative estimate is that at least 100,000 persons receive ECT each year, and by all accounts this number is growing. Two-thirds of those being shocked are women, and more than half of ECT patients are over the age of 65, although it has been given to children as young as three. ECT is not given at all in most state hospitals. It is concentrated in private, for-profit hospitals.
ECT drastically changes behavior and mood, which is construed
as improvement of psychiatric symptoms. However, since psychiatric symptoms usually recur, often after as little as one month, psychiatrists are now promoting “maintenance” ECT—one electrical grand mal seizure every few weeks, given indefinitely or until the patient or family refuses to continue.
THE EVIDENCE FOR ECT BRAIN DAMAGE
There are now five decades of evidence for ECT brain damage and memory loss. The evidence is of four types: animal studies, human autopsy studies, human in vivo studies which use either modern brain-imaging techniques or neuropsychological testing to assess damage, and survivor self-reports or narrative interviews.
Most of the studies of the effects of ECT on animals were done in the 1940s and ’50s. There are at least seven studies documenting brain damage in shocked animals (cited by Friedberg in Morgan, 1991, p. 29). The best known study is that of Hans Hartelius (1952), in which brain damage was consistently found in cats given a relatively short course of ECT. He concluded: “The question of whether or not irreversible damage to the nerve cells may occur in association with ECT must therefore be answered in the affirmative.”
Human autopsy studies were done on persons who died during or shortly after ECT (some died as a result of massive brain damage). There are more than twenty reports of neuropathology in human autopsies, dating from to 1940s to 1978 (Morgan, 1991, p. 30; Breggin, 1985, p.4). Many of these patients had what is called modern or “modified” ECT.
It is necessary to clarify briefly here what is meant by “modified” ECT. News and magazine articles about ECT commonly claim that ECT as it has been given for the past thirty years (that is, using general anesthesia and muscle-paralyzing drugs to prevent bone fractures) is “new and improved”, “safer” (i.e. less brain-damaging) than it was in the 1940s and ’50s.
Although this claim is made for public relations purposes, it is flatly denied by doctors when the media is not listening. For example, Dr. Edward Coffey, head of the ECT department at Duke University Medical Center and a well-known advocate of ECT, tells his students in the training seminar “Practical Advances in ECT: 1991”:
The indication for anesthetic is simply that it reduces the anxiety and the fear and the panic that are associated or that could be associated with the treatment. OK? It doesn’t do anything else beyond that…There are, however, significant disadvantages in
using an anesthetic during ECT…The anesthetic elevates seizure threshold… Very, very critical…
So it is necessary to use more electricity to the brain, not less, with “modified” ECT, hardly making for a safer procedure. In addition, the muscle-paralyzing drugs used in modified ECT amplify the risks. They make the patient unable to breathe independently, and as Coffey points out this means risks of paralysis and prolonged apnea.
Another common claim of shock doctors and publicists, that ECT “saves lives” or somehow prevents suicide, can be quickly disposed of. There is simply no evidence in the literature to support this claim. The one study on ECT and suicide (Avery and Winokur, 1976) shows that ECT has no effect on the suicide rate.
Case studies, neuroanatomical testing, neuropsychological testing, and self-reports that remain strikingly similar over 50 years testify to the devastating effects of ECT on memory, identity, and cognition.
Recent CAT scan studies showing a relationship between ECT and brain atrophy or abnormality include Calloway (1981); Weinberger et al (1979a and 1979b); and Dolan, Calloway et al (1986).
The vast majority of ECT research has focused and continues to focus on the effects of ECT on memory, for good reason. Memory loss is a symptom of brain damage and, as neurologist John Friedberg (quoted in Bielski, 1990) points out, ECT causes more permanent memory loss than any severe closed-head injury with coma or almost any other insult to or disease of the brain.
Reports of catastrophic memory loss date to the very beginning of ECT. The definitive study of ECT’s memory effects remains that of Irving Janis (1950). Janis conducted detailed and exhaustive autobiographical interviews with 19 patients before ECT and then attempted to elicit the same information four weeks afterwards. Controls who did not have ECT were given the same interviews. He found that “Every one of the 19 patients in the study showed at least several life instances of amnesia and in many cases there were from ten to twenty life experiences which the patient could not recall.” Controls’ memories were normal. And when he followed up half of the 19 patients one year after ECT, there had been no return of memory (Janis, 1975).
Studies in the 70s and 80s confirm Janis’ findings. Squire (1974) found that the amnesic effects of ECT can extend to remote memory. In 1973 he documented a 30-year retrograde amnesia following ECT. Freeman and Kendell (1980) report that 74% of patients questioned years after ECT had memory impairment. Taylor et al (1982) found methodological flaws in studies that purport to show no memory loss and documented deficits in autobiographical memory several months after ECT. Fronin-Auch (1982) found impairment of both verbal and nonverbal memory. Squire and Slater (1983) found that three years after shock the majority of survivors report poor memory.
The highest governmental authority on medical matters in the United States, the Food and Drug Administration (FDA), agrees that ECT is not good for your health. It names brain damage and memory loss as two of the risks of ECT. The FDA is responsible for regulating medical devices such as the machines used to administer ECT. Each device is assigned a risk classification: Class I for devices that are basically safe; Class II for devices whose safety can be assured by standardization, labeling, etc.; and Class III for devices which pose “a potential unreasonable risk of injury or illness under all circumstances. As a result of a public hearing in 1979, at which survivors and professionals testified, the ECT machine was assigned to Class III. There it remains today, despite a well-organized lobbying campaign by the American Psychiatric Association. In the files of the FDA in Rockville, Maryland, are at least 1000 letters from survivors testifying to the damage that was done to them by ECT. In 1984 some of these survivors organized as the Committee for Truth in Psychiatry to lobby for informed consent as a way of protecting future patients from permanent brain damage. Their statements challenge the assumption that survivors “recover” from ECT:
Most of my life from 1975-1987 is a fog. I remember some things when reminded by friends, but other reminders remain a mystery. My best friend since high school in the 1960s died recently and with her went a big part of my life because she knew all about me and used to help me out with the parts I couldn’t remember. (Frend, 1990)
I haven’t had a shock for over ten years now but I still feel
sad that I can’t remember most of my late childhood or any of my high school days. I can’t even remember my first intimate experience. What I know of my life is second hand. My family has told me bits and pieces and I have my high school yearbooks. But my family generally remembers the “bad” times, usually how I screwed up the family life and the faces in the yearbook are all total strangers. (Calvert, 1990)
As a result of these “treatments” the years 1966-1969 are almost a total blank in my mind. In addition, the five years preceding 1966 are severely fragmented and blurred. My entire college education
has been wiped out. I have no recollection of ever being at the University of Hartford. I know that I graduated from the institution because of a diploma I have which bears my name, but I do
not remember receiving it. It has been ten years since I received electroshock and my memory is still as blank as it was the day I left the hospital. There is nothing temporary about the nature of memory loss due to electroshock. It is permanent, devastating, and irreparable. (Patel, 1978)
ECT AS TRAUMATIC BRAIN INJURY
Both psychiatrist Peter Breggin (Breggin,, 1991, p. 196) and
ECT survivor Marilyn Rice, founder of the Committee for Truth in Psychiatry, have pointed out that minor head injury as a result of trauma often occurs without loss of consciousness, seizures, disorientation, or confusion, and is thus much less traumatic than a series of electroshocks. A better analogy would be that each individual shock is the equivalent of one moderate to severe head injury. The typical ECT patient, then, receives at least ten head injuries in rapid succession.
Proponents as well as opponents of ECT have long recognized it as a form of head injury.
As a neurologist and electroencephalographer, I have seen many patients after ECT, and I have no doubt that ECT produces effects identical to those of a head injury. After multiple sessions of ECT, a patient has symptoms identical 😮 those of a retired, punch-drunk boxer.. .After a few sessions of ECT, the symptoms are those of moderate cerebral contusion, and further enthusiastic use of ECT may result in the patient functioning at a subhuman level. Electroconvulsive therapy in effect may be defined as a controlled type of brain damage produced by electrical means. (Sament, 1983)
What shock does is throw a blanket over people’s problems. It would be no different than if you were troubled about something in your life and you got into a car accident and had a concussion. For a while you wouldn’t worry about what was bothering you because you would be so disoriented. That’s exactly what shock therapy does. But in a few weeks when the shock wears off, your problems come back. (Coleman, quoted in Bielski, 1990)
We don’t have a treatment. What we do is inflict a closed-head injury on people in spiritual crisis.. .closed-head injury! And we have a vast literature on closed-head injury. My colleagues are not eager to have literature on electroshock closed-head injury; but we have it in every other field. And we have considerably more than people are allowing for here today. It is electrical closed-head injury. (Breggin, 1990)
There has never been any debate about the immediate effects of a shock: it produces an acute organic brain syndrome which becomes more pronounced as shocks continue. Harold Sackeim, the ECT establishment’s premier publicist (anyone who has occasion to write about or refer to ECT, from Ann Landers to a medical columnist, is referred by the APA to Dr. Sackeim) states succinctly:
The ECT-induced seizure, like spontaneous generalized seizures in epileptics and most acute brain injury and head trauma, results in
a variable period of disorientation. Patients may not know their names, their ages, etc. When the disorientation is prolonged, it is generally referred to as an organic brain syndrome. (Sackeim, 1986)
This is so expected and routine on ECT wards that hospital staff become inured to making chart notations like “Marked organicity” or “Pt. extremely organic” without thinking anything of it. A nurse who has worked for years on an ECT ward says:
Some people seem to undergo drastic personality changes.
They come in the hospital as organized, thoughtful people who
have a good sense of what their problems are. Weeks later I see
them wandering around the halls, disorganized and dependent. They
become so scrambled they can’t even have a conversation. Then
they leave the hospital in worse shape than they came in.
(Anonymous psychiatric nurse, quoted in Bielski, 1990)
A standard information sheet for ECT patients calls the period
of most acute organic brain syndrome a “convalescence period” and warns patients not to drive, work, or drink for three weeks (New York Hospital-Cornell Medical Center, undated). Coincidentally, four weeks is the maximum time period for which proponents of ECT can claim alleviation of psychiatric symptoms (Opton, 1985), substantiating the statement made by Breggin (1991, pp. 198-99) and throughout the ECT literature that the organic brain syndrome and the “therapeutic” effect are the same phenomenon.
The information sheet states as well that after each shock the patient “may experience transitory confusion similar to that seen in patients emerging from any type of brief anesthesia.” This misleading characterization is belied by two doctors’ published observations of patients after ECT.(Lowenbach and Stainbrook, 1942). The article begins by stating “A generalized convulsion leaves a human being in a state where all that is called the personality has been extinguished.”
A compliance with simple commands like opening and closing the eyes and the appearance of speech usually coincide. The first utterances are usually incomprehensible, but soon it is possible to recognize first the words and then sentences, although they may have to be guessed at rather than directly understood…
If at this time patients were given a written order to write their name, they would not ordinarily follow the command…if then the request was repeated orally, the patient would take the pencil and write his name. At first the patient produces only scribbling and has to be constantly urged to continue. He may even drop back into sleep. But soon the initial of the first name may be clearly discernible…Usually 20 to 30 minutes after a full-fledged convulsion the writing of the name was again normal…
The return of the talking function goes hand in hand with the writing ability and follows similar lines. The muttered and seemingly senseless words and maybe the silent tongue movements are the equivalent of scribbling.. .But as time goes on it “is possible to establish question and answer sessions.. .From now on, the perplexity of the patient arising from his inability to grasp the situation pervades his statements.
He may ask if this is a jail. ..and if he has committed a crime.. The efforts of the patient to re-establish their orientation almost always follow the same line: “Where am I.”… know you” (pointing to the nurse)… to the question “What is my name?” “I do not know”…
The patient’s behavior when asked to perform a task such as to get up from the bed where he lies demonstrates another aspect of the process of recovery.. .he does not act according to voiced intentions. Sometimes urgent repetition of the command would set off the proper movements; in other cases beckoning had to be initiated by pulling the patient from the sitting position or removing one leg from the bed.. .But the patient then frequently stopped doing things and the next series of actions, putting on his shoes, tying the laces, leaving the room, had each time to be expressly commanded, pointed out, or the situation had to be actively forced. This behavior indicates lack of initiative…
It is possible, indeed likely, that a patient and her family could read the entire information sheet mentioned earlier and have
no idea that ECT involves convulsions. The words “convulsion” or “seizure” appear not at all. The sheet states that the patient will have “generalized muscular contractions of a convulsive nature”.
Recently Dr. Max Fink, the country’s best-known shock doctor, offered to let the media interview a patient right after a course of electroshock… for a fee of $40,000 (Breggin, 1991, p. 188).
It is common for persons who have received ECT to report being “in a fog”, without any of the judgment, affect, or initiative of their former selves, for a period of up to one year post-ECT. Afterwards they may have little or no memory of what happened during this period.
I experienced the explosion in my brain. When I woke up from the blessed unconsciousness I did not know who I was, where I was, nor why. I could not process language. I pretended everything because I was afraid. I did not know what a husband was. I did not know anything. My mind was a vacuum. (Faeder, 1986)
I just completed a series of 11 treatments and am in worse shape than when I started. After about 8 treatments I thought I had improved from my depression.. . I continued and my effects worsened. I began experiencing dizziness and my memory loss increased. Now that I had the 11th my memory and thinking abilities are so bad I wake up in the morning empty-headed. I don’t remember many past events in
my life or doing things with the various people in my family. It is hard to think and I don’t enjoy things. I can’t think about anything else. I can’t understand why everyone told me this procedure was so safe. I want my brain back. (Johnson, 1990)
LONG-TERM EFFECTS OF ECT ON COGNITIVE AND SOCIAL FUNCTIONING
The loss of one’s life history–that is, loss of part of the self–is in itself a devastating handicap; but added to this unique quality of ECT head injury are the cognitive deficits associated with other types of traumatic brain injury.
There is not now nearly enough research on the nature of ECT cognitive deficits, or of the impact of these deficits on social roles, employment, self-esteem, identity, and long-term quality of life for survivors. There is only one study which examines how ECT (negatively) affects family dynamics (Warren, 1988). Warren found that ECT survivors “commonly” forgot the very existence of their husbands and children! For example, one woman who had forgotten she had five children was furious when she found out her husband had lied to her, telling her the children belonged to a neighbor. Husbands frequently used their wives’ amnesia as an opportunity to reconstruct marital and family history, to the husbands’ advantage. Clearly, Warren’s study suggests there is much to explore in this area.
There is currently no research which addresses the question of how best to meet the rehabilitative and vocational needs of ECT survivors. One such study, proposed but not implemented in the 1960s, is described in Morgan (1991, pp. 14-19). Its hopeful conclusion that “with enough data, it may some day be possible to deal therapeutically with ECT-damaged patients, perhaps with some radically new approach to psychotherapy, or direct re-education or modification of behavior” has, a generation later, not come to pass. Funding sources such as the National Institute on Disability and Rehabilitation Research must be encouraged to sponsor such research.
The research which exists shows that sensitive psychometric testing always reveals cognitive deficits in ECT survivors. Even given the differences in available testing methods, the nature of these deficits has remained stable over 50 years. Scherer (1951) gave tests of memory function, abstraction, and concept formation to a group of survivors who had received an average of 20 shocks (using brief-pulse or square wave current, the type that is standard today) and to a control group of patients who did not receive ECT. He found that “lack of improvement as between pre- and post-shock results may indicate that shock has injured the patient to the extent that he is unable to achieve his premorbid intellectual potentialities, even though he can shake off the intellectually debilitating effects of the psychosis.” He concluded that “harmful organic results in areas of intellectual function.. .may nullify the partial benefits of the treatment.”
Templer, Ruff and Armstrong (1973) found that performance on
the Bender Gestalt test was significantly worse for persons who had received ECT than for carefully matched controls who had not.
Freeman, Weeks and Kendell (1980) matched a group of 26 ECT survivors with controls on a battery of 19 cognitive tests; all of the survivors were found to be significantly cognitively impaired. The researchers attempted to attribute the impairment to drugs or mental illness, but could not do so. They concluded that “our results are compatible” with the statement that ECT causes permanent mental impairment. The interviews with survivors revealed almost identical deficits:
Forgetful of names, gets easily sidetracked and forgets what he was going to do.
Forgets where she puts things, can’t remember names.
Memory poor and gets confused, to such an extent that he loses jobs.
Difficult to remember messages. Gets mixed up when people tell her things.
Said she was known in her bridge club as the “computer because of her good memory. Now has to write things down, and misplaces keys and jewelry.
Can’t retain things, has to make lists.
Templer and Veleber (1982) found permanent irreversible cognitive deficits in ECT survivors given neuropsychological testing. Taylor, Kuhlengel and Dean (1985) found significant cognitive impairment after only five shocks. “Since cognitive impairment is such an important side effect of bilateral ECT, it seems important to define as carefully as possible which aspects of the treatment are responsible for the deficit,” they concluded. Although they did not prove their hypothesis about the role of an elevation in blood pressure, “It is important to continue to search for the cause or causes of this impairment. If this important side effect could be eliminated or even modified, it could only be a service to patients…” But there is no separating the so-called therapeutic effects from the disabling cognitive effects.
A study-in-progress designed and implemented by members of the National Head Injury Foundation (SUNY Stony Brook, unpublished thesis project) with the same size sample as the Freeman et al study uses a simple self-scoring questionnaire to evaluate cognitive deficits in both the acute and chronic organic brain syndrome stages. The study also elicits information about coping strategies (self-rehabilitation) and about the amount of time it takes to accommodate to deficits.
All respondents in the study indicated they suffered from common symptoms of head injury both during the year after ECT and many,
many years afterwards. The average number of years since ECT for
the respondents was twenty-three. 80% had never heard of cognitive rehabilitation.
Only one-fourth felt they had been able to adjust to or compensate for their deficits by their own efforts. Most indicated they were still struggling with this process. Of those few who felt they had adjusted or compensated, the average number of years to reach this stage was fifteen. When those who had adjusted or compensated were asked how they did it, the most frequently cited answer was “hard work on my own.”
Respondents were asked if they would have liked acknowledgment of or help with their cognitive problems during the year after ECT, and whether they would still like help regardless of how long ago they had been shocked. All but one of the respondents said they would have wanted help in the post-ECT year, and 90% said they still wanted help.
In the last several years with the increased availability of neuropsychological testing, increasing numbers of ECT survivors have taken the initiative where researchers have failed, and have had testing done. In every known case, testing has shown unmistakable brain dysfunction.
Patients’ accounts of cognitive deficits from diverse sources
and across continents remain constant from the 1940s to the 1990s. If these people are imagining their deficits, as some shock doctors like to claim, it is unthinkable that patients over five decades should all imagine exactly the same deficits. One cannot read these accounts without calling to mind the description of minor head injury in the National Head Injury Foundation brochure “The Unseen Injury: Minor Head Trauma”:
Memory problems are common.. .You may be more forgetful of names, where you put things, appointments, etc. It may be harder to learn new information or routines. Your attention may be shorter, you may be easily distracted, or forget things or lose your place when you have to shift back and forth between two things. You may find it harder to concentrate for long periods of time, and become mentally confused, e.g. when reading. You may find it harder to find the right word or express exactly what you are thinking. You may think and respond more slowly, and it may take more effort to do the things you used to do automatically. You may not have the same insights or spontaneous ideas as you did before.. .You may find it more difficult to make plans, get organized, and set and carry out realistic goals…
I have trouble remembering what I did earlier this week. When I talk, my mind wanders. Sometimes I can’t remember the right word to say, or a co-worker’s name, or I forget what I wanted to say. I have been to movies that I can’t remember going to. (Frend, 1990)
I was an organized, methodical person. I knew where everything was. I’m different now. I often can’t find things. I’ve become very scattered and forgetful. (Bennett, quoted in Bielski, 1990)
These words eerily echo those of the ECT survivors described by Dr. M.B. Brody in 1944:
(18 months after 4 shocks) One day three things were missing, the poker, the paper, and something else I cannot remember. I found the poker in the dustbin; I must have put it there without remembering. We never found the paper and I am always very careful of the paper. I want to go and do things and find I have already done it. I have to think about what I am doing so that I know I have done it.. .it is uncanny when you do things and find you cannot remember them.
(One year after 7 shocks) The following are some of the things I forget: the names of people and places. When the title of a book is mentioned I may have a vague idea that I have read it, but cannot remember what it is about. The same applies to films. My family tells me the outlines and I am able to remember other things at the same time.
I forget to post letters and to buy small things, such as mending and toothpaste. I put things away in such safe places that when they are needed it takes hours to find them. It did seem that after the electric treatment there was only the present, and the past had to be recalled a little at a time.
All of Brody’s survivors had incidents of not recognizing familiar people:
(One year after 14 shocks) There are many faces I see that I
know I should know quite a lot about, but only in a few cases can I recall incidents connected with them. I find I can adjust myself to these circumstances by being very careful in making strong denials, as fresh personal incidents constantly crop up.
38 years later, a woman who had 7 shocks wrote:
I was shopping in a department store when a woman came over to me, said hello and asked me how I was. I had no idea who she was or how she knew me.. .1 couldn’t help feeling embarrassed and helpless, as if I were no longer in control of my faculties. This experience was to be the first of many encounters in which I would be unable to recall people’s names and the context in which I knew them. (Heim, 1986)
The deficits in storing and retrieving new information associated with ECT may severely and permanently impair learning ability. And, just as the NHIF brochure states, “Often these problems are not encountered until a person returns to the demands or work, school, or home.” Attempting to go or return to school especially overwhelms and commonly defeats ECT survivors:
When I returned to classes I found I couldn’t remember material I had learned earlier, and that I was totally unable to concentrate… My only choice was to withdraw from university. If there was one area in which I had always excelled, it was in school. I now felt like a complete failure and that I’d never be able to return to university. (Heim, 1986)
Some of the things I tried to study was like trying to read a book written in Russian—no matter how hard I tried I could not get the sense of what the words and diagrams meant. I forced myself to concentrate but it continued to appear gibberish. (Calvert, 1990)
In addition to destruction of entire blocks of pre-ECT memories I have continued to have considerable difficulty in memory with regard to academic pursuits. To date, of embarrassing necessity I have been forced to tape-record all education materials that require memorization. This has included basic classes in accounting and word-processing materials. I was forced to retake accounting in 1983. Now, I am again forced to retake a basic one-semester course in computerized word processing. Currently, I am finding it extremely embarrassing and hurtful when fellow classmates (however innocently) refer to my struggles in grasping my study materials, thusly: “You are an AIR-BRAIN!” How can I explain that my struggles are due to ECT? (Winter, 1988)
I started school full time and found I did much better than
I could imagine remembering information on field placement and classes—but I couldn’t understand what I read or put ideas together—analyze, draw conclusions, make comparisons. It was a shock. I was at last taking courses on theory.. .and ideas just didn’t remain with me. I finally accepted the fact that it was just going to be too much torture for me to continue so I quit my field placement, two courses, and attended only one discussion course until the end of the semester when I withdrew. (Maccabee, 1989)
It is often the case that the ECT survivor is disabled from
her or his previous work. Whether or not a survivor returns to work depends on the type of work previously done and the demands it makes on intellectual functioning. The statistics on employment of ECT survivors would seem to be just as dismal as statistics on employment of head-injured persons in general. In the SUNY survey, two-thirds of the respondents were unemployed. Most indicated that they had been employed prior to ECT and unemployed since. One elaborated:
At the age of 23 my life was changed because after ECT I experienced disabling difficulty understanding, recalling, organizing and applying new information and also problems with distractibility and concentration. I had ECT while I was teaching and because my level of functioning had changed so dramatically I quit my job. My abilities have never returned to pre-ECT quality. Pre-ECT I’d been able to function in a totally individualized sixth-grade classroom where I designed and wrote much of the curriculum myself. Due to the problems I had after ECT I never returned to teaching. (Maccabee, 1990)
A nurse writes of a friend at one year post-ECT:
A friend of mine had 12 ECT treatments in September-October 1989. As a result, he has retrograde and anterograde amnesia and is unable to perform his work as a master plumber, cannot remember his childhood and cannot remember how to get around the city where he has lived all his life. You can imagine his anger and frustration.
The psychiatrists have been insisting that his problem is not ECT-related but is a side effect of his depression. I have yet
to see a severely depressed person fight so hard to regain their ability to think clearly and be able to go back to work again. (Gordon, 1990)
She has stated clearly the impossible situation of ECT survivors. There can be no help for them until there is recognition of the traumatic brain injury they have sustained and its disabling effects.
ECT survivors have the same needs for understanding, support,
and rehabilitation as other head injury survivors. If anything, it could be said that their needs may be greater, since the massive retrograde amnesia unique to ECT can precipitate an even greater crisis of identity than occurs with other head injuries.
Neuropsychologist Thomas Kay, in his paper Minor Head Injury: An Introduction for Professionals, identifies four necessary elements in successful treatment of head injury: identification of the problem, family/social support, neuropsychological rehabilitation, and accommodation; Identification of the problem, he says, is the most crucial element since it must precede the others. Tragically at this time it is the rule rather than the exception that for ECT survivors none of these elements come into play.
This is not to say that ECT survivors never successfully build a new self and a new life. Many courageous and hardworking survivors have—but they have until now always had to do it alone, without any help, and it has taken a sizable chunk of their lifetimes to do it.
As time goes on, I have made a great effort to regain the maximum use of my brain by forcing it to concentrate and to try to remember what I hear and read. It has been a struggle… I feel like I have been able to maximize the undamaged parts of my brain.. .I still mourn the loss of a life that I didn’t have. (Calvert, 1990)
Survivors are beginning to share their hard-won strategies with other survivors, professionals who would help them would do well to listen to those whose daily business, even decades after ECT, is surviving.
I tried a course in general psychology, which I’d had As on in college. I quickly discovered that I couldn’t remember anything if I just read the text.. .even if I read it several times (like four or five). So I programmed my materials by writing out questions for each sentence and writing the answers on the back of the cards. I then quizzed myself until the material was memorized. I have all the cards from two courses. What a stack… I memorized the book, practically… and worked five to six hours a day on weekends and three or four during the work week… It was quite different from when I was in college. Then, I read things and remembered them. (Maccabee, 1989)
She also describes her own cognitive retraining exercise:
The main exercise consists primarily of counting from 1-10 while visualizing, as steadily as possible, some image (object, person, etc.) I thought of this exercise because I wanted to see if I could practice using the right and left sides of my brain. Since I began this I think I read that that isn’t what I was doing. But, it seemed to work. When I first started the exercise I could hardly hold an image in mind, much less count at the same time. But I have become quite good at it and I relate it to an improved ability to deal with distractions and interruptions.
Similar exercises, in fact, are practiced in formal cognitive rehabilitation programs.
Often self-rehabilitation is a desperate, trial-and-error process that takes many lonely, frustrating years. A woman describes how she taught herself to read again after ECT, at age 50:
I could process language only with difficulty. I knew the words, how they sounded, but I had no comprehension.
I did not literally start at “scratch”, as a preschooler, because I had some memory, some understanding of letters and sounds—words—but I had no comprehension.
I used TV for newscasts, the same item in the newspaper, and tried to match these together to make sense. Only one item, one line. Try to write it in a sentence. Over and over, again and again.
After about six months (this was daily for hours), I tried Reader’s Digest. It took me a very long time to conquer this–no pictures, new concepts, no voice telling me the news item. Extremely frustrating, hard, hard, hard. Then magazine articles. I did it! I went on to “For Whom the Bell Tolls” because I vaguely remembered I had read it in college and had seen the movie. But it had many difficult words and my vocabulary was not yet at the college level, so I probably spent two years on it. It was 1975 when I felt I had reached the college level in reading.(I started in 1970.) (Faeder, 1986)
One survivor for whom the slow process of rehabilitation has taken two decades expresses the hope of many others that the process might be made easier for those being shocked in the ’90s:
I might never have thought that rehabilitation was something that ECT patients could benefit from until I was examined in 1987, at my request, at a local psychogeriatric center because I worried that perhaps I had Alzheimer’s disease because my intellectual functioning still caused me problems. During the psychological testing, which extended over a period of two months due to scheduling problems, I observed that my concentration improved and I functioned better at work. I reasoned that the “time-encapsulated” efforts to concentrate and focus my attention carried over. The tests were not meant to be rehabilitative, but they somewhat served this purpose—and convinced me that sequential retraining or practicing of cognitive skills could be beneficial to ECT patients. Of course, this was almost 20 years after ECT…
I hold a responsible, though poorly paying, job as an administrative assistant for a professional organization—performing at tasks that I never thought I would be able to do again. I might have been able to do them earlier if I’d had rehabilitation training. At this time I am concerned about the plight of ECT patients who are still struggling. While these ECT “complainers” are at risk of becoming increasingly depressed—and perhaps suicidal—because
of their disabilities, professionals continue to argue about whether or not ECT causes brain damage using insufficient and in some cases outdated data.
I wish that some brain trauma research and rehabilitation
center would accept a few ECT patients and at least see if practicing or “reprogramming” of cognitive skills could result
in improved performance. (Maccabee, 1990)
In 1990, three ECT survivors were treated in the cognitive rehabilitation program of a New York City hospital. Slowly, attitudes and preconceived ideas are changing.
ECT IN THE ’90s
ECT has gone in and out of fashion during its 53-year history; now on the wane, now making a comeback. Whatever happens in this decade (ironically designated by President Bush the Decade of the Brain), ECT survivors cannot afford to wait until a favorable political climate allows them the help they need. They need it now.
There are some hopeful signs. The 1980s saw an unprecedented boom in ECT (medical malpractice) lawsuits citing brain damage and memory loss, to the point where settlements are steadily increasing for those with the stamina and resources to pursue legal redress. The ECT machine remains in Class III at the FDA. ECT survivors are joining head injury support groups and organizations in record numbers.
State legislatures are toughening ECT laws, and city councils
are taking courageous stands against ECT. On February 21, 1991, after well-publicized hearings at which survivors and professionals testified, the Board of supervisors of the City of San Francisco adopted a resolution opposing the use of ECT. A bill pending in the New York State Assembly (AB6455) would require the state to keep statistics on how much ECT is done, but its accompanying strongly worded memorandum opens the door for stricter measures in the future. In July 1991 the Madison, Wisconsin city council proposed a resolution to recommend a ban on the use of ECT. (Shock was banned in Berkeley, California in 1982 until the local psychiatrists’ organization overturned the ban on a technicality.) The council’s Public Health Committee unanimously agreed that accurate information about the effects of ECT on memory must be presented to patients, and they are writing a resolution to contain full and accurate information. And in August 1991 ECT survivors testified, and a manuscript containing accounts of memory loss by 100 survivors was presented, at hearings in Austin, Texas, before the Texas Department of Mental Health. Subsequently the Department’s regulations were revised to contain a stronger warning about permanent mental dysfunction.
It is difficult, even in so many pages, to paint a full picture of the suffering of ECT survivors and the devastation experienced not only by the survivors but by their families and friends. And so the last words, chosen because they echo the words of so many others over the years, belong to a former nurse estranged from her husband and living on Social Security Disability, fighting in the legal system for redress and working with an advocacy group.
What they took from me was my “self”. When they can put a dollar value on theft of self and theft of a mother I would like
to know what the figure is. Had they just killed me instantly the kids would at least have had the memory of their mother as she
had been most of their lives. I feel it has been more cruel, to
my children as well as myself, to allow what they have left to breathe, walk, and talk.. .now the memory my kids will have is of this “someone else” who looks (but not really) like their mother. I haven’t been able to live with this “someone else” and the life I’ve lived for the past two years has not been a life by any stretch of the imagination. It has been a hell in the truest sense of the word.
I want my words said, even if they fall on deaf ears. It’s not likely, but perhaps when they are said, someone may hear them and at least try to prevent this from happening again. (Cody, 1985)
Avery, D. and Winokur, G. (1976). Mortality in depressed patients treated with electroconvulsive therapy and antidepressants. Archives of General Psychiatry, 33, 1029-1037.
Bennett, Fancher. Quoted in Bielski (1990).
Bielski, Vince (1990). Electroshock’s Quiet Comeback. The San Francisco Bay Guardian, April 18, 1990.
Breggin, Peter (1985). Neuropathology and Cognitive Dysfunction from ECT. Paper with accompanying bibliography presented at the National Institutes of Health Consensus Development Conference on ECT, Bethesda, MD., June 10.
Breggin, Peter (1990). Testimony before the Board of Supervisors of the City of San Francisco, November 27.
Breggin, Peter (1991). Toxic Psychiatry. New York: St. Martins Press.
Brody, M.B. (1944). Prolonged memory deficits following electrotherapy. Journal of Mental Science, 90 (July), 777-779.
“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.
Aside from the fact that it is really stupid and cruel to say this to a student taking your course on creativity, and I was stupid enough to listen to him without objecting…Aside from all that, when Robert Fritz says artists can’t use art to work out their problems, I say, Balderdash! SAYS WHO? SAYS WHO?!!!
Can you imagine what the world would be like without artists who did NOT work out their problems in and through their art? A world without the likes of, and I am just selecting a few very famous examples from all over the art world:
Edvard Munck’s numerous depictions…
Just in case you doubt that he was rendering his emotional turmoil in pastel and paint, he wrote these sentences on the frame of one of the four known original versions of what the world now knows as
I was walking along the road with two friends – the sun was setting – suddenly the sky turned blood red – I paused, feeling exhausted, and leaned on the fence – there was blood and tongues of fire above the blue-black fjord and the city – my friends walked on, and I stood there trembling with anxiety – and I sensed an infinite scream passing through nature.
And where would the world of poetry be without Sylvia Plath. Surely it would be a milder and less rich place without her magnificent and moving poem, “Daddy”, which I will quote only in part below:
“You do not do, you do not do
Any more, black shoe
In which I have lived like a foot
For thirty years, poor and white,
Barely daring to breathe or Achoo.
Daddy, I have had to kill you.
You died before I had time——
Marble-heavy, a bag full of God,
Ghastly statue with one gray toe
Big as a Frisco seal
And a head in the freakish Atlantic
Where it pours bean green over blue
In the waters off beautiful Nauset.
I used to pray to recover you.
The poem continues for several more stanzas which are well worth reading before ending with the incredible punch of:
“…So daddy, I’m finally through.
The black telephone’s off at the root,
The voices just can’t worm through.
If I’ve killed one man, I’ve killed two——
The vampire who said he was you
And drank my blood for a year,
Seven years, if you want to know.
Daddy, you can lie back now.
There’s a stake in your fat black heart
And the villagers never liked you.
They are dancing and stamping on you.
They always knew it was you.
Daddy, daddy, you bastard, I’m through.“
A contemporary poet who has for many years mined her life and traumas for art, is undeniably Sharon Olds. But one poet who made art out of exquisite spiritual agonies was the British Jesuit convert,
Gerard Manley Hopkins in the mid-1800s, who wrote what are now called The Terrible Sonnets, terrible because they portray with astonishing depth the suffering and spiritual anguish he experienced as a parish priest going through the dark night of the soul. I do not know of any poet, then or now, who has done it better.
This is one of my all-time favorites of Hopkins. But you really need to read it aloud…
Not, I’ll not, carrion comfort, Despair, not feast on thee;
Not untwist — slack they may be — these last strands of man
In me ór, most weary, cry I can no more. I can;
Can something, hope, wish day come, not choose not to be.
But ah, but O thou terrible, why wouldst thou rude on me
Thy wring-world right foot rock? lay a lionlimb against me? scan
With darksome devouring eyes my bruisèd bones? and fan,
O in turns of tempest, me heaped there; me frantic to avoid thee and flee?
Why? That my chaff might fly; my grain lie, sheer and clear.
Nay in all that toil, that coil, since (seems) I kissed the rod,
Hand rather, my heart lo! lapped strength, stole joy, would laugh, chéer.
Me? or me that fought him? O which one? is it each one? That night, that year
Of now done darkness I wretch lay wrestling with (my God!) my God.
Speaking of artists, does anyone else perhaps believe that Francisco Goya might have been working out something in this painting?
Francisco Goya Saturn Devouring Son
But as Robert Fritz said to me in class, and I stupidly took to heart, “ARTISTS CAN’T USE ART TO WORK OUT PROBLEMS”…
Geee, they can’t? How dumb of me to think they can and do it, all the time.
Remember Franz Kafka? Why do I think he too might have been dealing with his authoritarian father in such books as THE TRIAL, THE CASTLE, THE PENAL COLONY or a story like “The Hunger Artist”…No, that is impossible, right? After all, artists cannot and do not do such things, not real artists…Not according to Robert Fritz, who is the arbiter of all things art!
Songwriters are notorious for displaying their hearts on their sleeves, as most of us know. But VIc Chesnutt, who later committed suicide, did this in spades, with his song, “Coward.” This song is far too raw and painful to me to place it here as a sound file. But I will give you the lyrics and tell you to look for a version of Vic singing it, as no one can do it better.
The courage of the coward Is greater than all others A scaredy-cat’ll scratch ‘im If you back ‘im in a corner But I ,I ,I, I am a coward I, I, I am a coward Courage born of despair and impotence Submissive dogs can Lash out in fear and be Very, very dangerous But I ,I ,I, I am a coward I, I, I am a coward
Anyhow, I think I have made a case for stating that art — which can be used for a great many purposes, in fact can be used in whatever fashion and for whatever use you want to employ it, because truly there are no rules — most certainly one can work out one’s problems in and through using art. What better way to do so in fact? Better than taking a load of guns and shooting up the nearest _________! (fill in the blank with the most recent mass shooting locale.)
I welcome my readers to send me examples of artists who expressed themselves or used their problems to make art. I will add them to the list, especially if you provide a link to an example of their work.
Much love to all,
Pamela Spiro Wagner
Oh, I plum forgot! Here is my own example of using art to deal with problems:
Please note that i am reposting this frorm a week ago as it got accidentally deleted, but i cannot repost the comments. Anyone who wishes to recomment is welcome to.
It all started when i bodily “escorted” the nurse,KJ out of my bathroom, where I had situated my mattress, and had her leave my lunch on the table outside. I had been vocalizing loudly and softly virtually only the three words, “oswall wistofi matootam” for days uncontrollably, and over the past hour i had screamed at the top of my lungs from my room, which the nurse had to have heard but made no response. When she simply left my lunch at the table, i felt utterly ignored and abandoned, and in a rage of certainty that she was plotting against me, picked up the cup of coffee and threw it straight at her. With unusual accuracy, it found its target in her center. My next lob hit only the wall.
In certainty of repercussion, i slammed my door and waited. Soon the usual code was called, but instead of burly men bursting in the door, i heard them packing up the sitting area for quite some time, and it knew it took them some several minutes to prepare an injection of my medications. But my terror only increased, so i grabbed a chair to defend my self. Finally they opened the door. KJ in an oh so nice voice said, “pam, i have medication for you.” And they quickly grabbed the chair and four men upended me and laid me on the floor near the bed frame, which was covered in my artwork and books. It took quite some time for the staff to methodically pack up all items they feared, apparently, might go flying at them afterwards ( though if proper protocol had been followed from tHe first, nothing would have).
This proper protocol, by the way, had been developed by another nurse and i after much discussion of my detailed advanced directive and my intense horror of locked seclusion and mechanical restraints, both of which i have experienced in abundance and usually for discipline or convenience, almost never for any truly emergent reason. That said, i believe the first nurse, KJ had lost her temper with me, and decided not to follow this protocol on the unit because she wanted to punish me, as will be demonstrated by what followed.
Having brought the two IM medications with her, which the protocol for agitation we had worked out calls for, she eventually called for the men to deposit me on the bed frame so she could inject them, one in each leg. She did so. Then, instead of having them keep me in a protective hold for as long as i needed to calm myself and potentially fall asleep, which usually took little more than 10-15 minutes, she said, she was having everyone leave and locking me alone in my emptied room. I screamed aloud at this. “I have an advanced directive! You cannot do that!” I pleaded but they forced the door closed against me and locked it.
I screamed to no avail and then started hitting my head in terror against the door in an effort to get them to open it. This worked in a short time, and three aides were sent in. We sat on the bed frame and they actually held my limbs, i thought in such a way as to comfort me. Little did i understand the truth, because even as i very quickly calmed down, soon through the door, the same angry nurse pushed a big prison-issue restraint chair. She yelled at me, “now you are going to have to sit in this!!!
I yelled back, “No!!! No restraints. My advance directive says so!”
I want to interrupt here to quote the government’s own research. SAMHSA’s issue brief #1 March 2010 on promoting alternatives to the use of seclusion and restraints says:
“…the use of seclusion and restraint has often been perceived as therapeutic to consumers. This misconception has been challenged and refuted. Increasing research has identifed the role of trauma in mental and addiction disorders. Research into trauma and trauma-informed care identify common themes about the impact of trauma and how traumatic life experiences can impede an individual’s ability to manage his or her own behaviors or engage in appropriate behaviors in the community.
“Also, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable . Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors staff members are attempting to control or eliminate.”
But they grabbed me and forced me into that chair and despite my struggles and terrified screams of protest they forced nine straps around my body, yes, 9-point restraints because K— J—-, RN, was still angry with me and refused to utilise our calming no-restraints, no seclusion protocol. This protocol had not only helped me but had also since then, so i was told, been used to calm and help other agitated patients without seclusion cells or mechanical restraints after i insisted that the unit staff start doing their “best to avoid restraints” with everyone, not just for me because my A.D insists on it.
Once strapped in to that horrendous chair, i screamed at the nurse, “You are just punishing me!” And calmly, she answered back, “Well, you threw hot coffee at me, what do you expect but punishment!?”
Then she walked out of the room, leaving two aides in the room to tighten the straps so tight that i could not move and felt the circulation in one hand go dead.
In horror, i shrieked for help. I pleaded for anyone to help me, for god’s sake. What the hell were they doing to me?!? Please just help me, someone!!? It upset the other patients to hear this just outside my room. I even begged them to put me in regular 4-point restraints on a bed where at least i could relax and fall asleep. Why hadn’t the nurse not brought me to the seclusion room to begin with, where the walls and door were all were padded if she was not going to follow the protocol?
In the end, it took two hours and two episodes in that terrible chair before they freed me.
That evening, as a response to the trauma, i defecated on the rug in the dining area, and painted with feces on the wall.
Surely this is no way to treat an animal, let alone a troubled psychiatric patient, especially not when there is already a calming,non-violent protocol set up to deal with her when she is agitated?
I say, chairs like this need to be trashed. Once a hospital orders one — and where do they get them? From prison suppliers!) they will use it. They say they use it for emergencies only, but as i have shown, once they have such a chair, it will be used abusively–always, always, always.
The only way to end seclusion and restraints is to stop it now and. For good. The more hospitals dilly-dally saying, soon, we will when we can, they will never stop. There will always been someone to say, no, what about this or that. But abuse is abuse and restraints are abusive by definition. Stop the use of a restraint chair and bed and all use of mechanical restraints by stopping. And then you will find a way to deal with problems arising that work better.
The painting i did below depicts the chair they held me in, minus the waist strap but with the toe restraints.
“There is no negative space, only the shapely void. Hold your hands out, cup the air. To see the emptiness you hold is to know that space loves the world.” P. Wagner
Pamela Spiro Wagner
rutland regional medical center
Rutland vt 05701
(Sorry but my last post about their use of the restraint chair was very unexpectedly deleted…i still have the draft and can find the emailed comments, but i dunno that i have the heart to repost it unless someone requests it…)
I was left alone like this, offered neither food nor water and given only an apple when I begged for one, for three days and two night at John Dempsey Hospital in the 1980s at University of Connecticut Health Center, in Farmington Connecticut. If anyone remembers having been through this, Please get in touch with me! ( If anyone know whether Jim or Don Steadman, the aides, are still alive, please let me know…or have them get in touch too. I believe they would remember attending to me while the doctor kept me trussed up like this…)
I do not know where this photo came from originally nor who made it but i obtained it from Sarah Grace Wolfram’s facebook page, so i am crediting her. In any event, what it says means the world to me.
I DID NOT CHANGE…IN FACT, MAYBE I NEVER NEEDED TO CHANGE, I JUST WOKE UP…to the fact that the world i had been living in was wrong.
I don’t know what to do. My skin is thinner than gossamer yet people think i am thick-skinned and hide-bound as a hardbound book packed with information and feeling nothing. They have no idea i feel everything from the words people speak to the experiences they have and they describe. I feel it all in and under my skin down to my marrow, i feel, how to explain the knife-edge sensitivity of my life? When Jesse blithely talked about breaking glass and stepping on it, the shard penetrating his foot, MY FOOT felt the glass pierce my arch and plunge straight up through my entire foot until it broke the skin at the top of my foot, and i had to muffle my scream of pain so i did not embarrass myself…it is always this way.
I do not “like” dogs but i feel them too. I feel them! I know where they need to be scratched under their chins and between their ears…always. And why? Because i myself feel it under my chin and between the ears. I love cats, yes. Dogs and cats both understand that i feel them. All animals know that i feel them. But it is too much for me. To feel everything and all that pain. In medical school i could not draw blood from another student because i was too inexpert at it and i felt the pain i was causing him…and despite my hardened exterior, i feel everyone’s pain and sensations, except perhaps their pleasure….i might be able to feel that too, but i distance myself from that because it feels like an intrusion on their privacy. When teddy lays his head on someone’s shoulder, i can feel that pressure on my shoulder. I do not know whether Teddy feels pleasure or relief, that is to say, viscerally, i could feel it, but i must not enter that feeling because it is too private.
I also know what people are thinking. I read people’s minds. They speak what they think to me, and i hear it out loud because they think too loud, but then i get confused between their thoughts and what only i can hear and i respond to what i heard out loud. Then things go haywire, because they say they never said such a thing, and others agree, and i look “crazy” because they did only think them. But in fact, i did hear them think it and they spoke it to me out loud with their thoughts, and my only crime was not knowing the difference and responding out loud. In such cases, they always have the benefit of plausible deniability, and i have nothing…but the truth of knowing what i know, which is that i know what is really going on.
This exquisite sensitivity is both a gift and a curse. Over the years the brutality of hospitals and “treatment” has forced me to try to ignore what i feel or at least pretend to. But things keep happening between me and others that force me to know more than i would ordinarily — if i did not have this gift/curse — want or have to know.
I was always told, “you are just paranoid” …”this is not happening”. And was made to ignore the reality of what i felt was going on around me, rather than speak about it and explore it. But i knew it was true, it was real, it was happening. You see, i feel people too, the way i feel animals, and i understand them, and i knew that they could not bear the fact that i heard their thoughts and knew what they really thought.
i always knew it was not paranoia, just truth they needed to conceal, due to fear and other difficult emotions. So they labeled me paranoid as a way to escape from admitting that i was able in fact to read their minds….
The first picture is of Danielle a staff member who was the first person to meet me when I was transferred to the state hospital from Central Vermont Medical Center. The black and white drawing is of Erin, who also spent much time with me, as I was on 1:1 and 2:1 the entire time I was there. The last picture is of a potato beetle I found in a national geographic magazine on the unit.
Johann HariAuthor of ‘Chasing The Scream: The First and Last Days of the War on Drugs’
FROM THE HUFFINGTON POST:
The Likely Cause of Addiction Has Been Discovered, and It Is Not What You Think
By Johann Hari
It is now one hundred years since drugs were first banned — and all through this long century of waging war on drugs, we have been told a story about addiction by our teachers and by our governments. This story is so deeply ingrained in our minds that we take it for granted. It seems obvious. It seems manifestly true. Until I set off three and a half years ago on a 30,000-mile journey for my new book, Chasing The Scream: The First And Last Days of the War on Drugs, to figure out what is really driving the drug war, I believed it too. But what I learned on the road is that almost everything we have been told about addiction is wrong — and there is a very different story waiting for us, if only we are ready to hear it.
If we truly absorb this new story, we will have to change a lot more than the drug war. We will have to change ourselves.
I learned it from an extraordinary mixture of people I met on my travels. From the surviving friends of Billie Holiday, who helped me to learn how the founder of the war on drugs stalked and helped to kill her. From a Jewish doctor who was smuggled out of the Budapest ghetto as a baby, only to unlock the secrets of addiction as a grown man. From a transsexual crack dealer in Brooklyn who was conceived when his mother, a crack-addict, was raped by his father, an NYPD officer. From a man who was kept at the bottom of a well for two years by a torturing dictatorship, only to emerge to be elected President of Uruguay and to begin the last days of the war on drugs.
I had a quite personal reason to set out for these answers. One of my earliest memories as a kid is trying to wake up one of my relatives, and not being able to. Ever since then, I have been turning over the essential mystery of addiction in my mind — what causes some people to become fixated on a drug or a behavior until they can’t stop? How do we help those people to come back to us? As I got older, another of my close relatives developed a cocaine addiction, and I fell into a relationship with a heroin addict. I guess addiction felt like home to me.
If you had asked me what causes drug addiction at the start, I would have looked at you as if you were an idiot, and said: “Drugs. Duh.” It’s not difficult to grasp. I thought I had seen it in my own life. We can all explain it. Imagine if you and I and the next twenty people to pass us on the street take a really potent drug for twenty days. There are strong chemical hooks in these drugs, so if we stopped on day twenty-one, our bodies would need the chemical. We would have a ferocious craving. We would be addicted. That’s what addiction means.
One of the ways this theory was first established is through rat experiments — ones that were injected into the American psyche in the 1980s, in a famous advert by the Partnership for a Drug-Free America. You may remember it. The experiment is simple. Put a rat in a cage, alone, with two water bottles. One is just water. The other is water laced with heroin or cocaine. Almost every time you run this experiment, the rat will become obsessed with the drugged water, and keep coming back for more and more, until it kills itself.
The advert explains: “Only one drug is so addictive, nine out of ten laboratory rats will use it. And use it. And use it. Until dead. It’s called cocaine. And it can do the same thing to you.”
But in the 1970s, a professor of Psychology in Vancouver called Bruce Alexandernoticed something odd about this experiment. The rat is put in the cage all alone. It has nothing to do but take the drugs. What would happen, he wondered, if we tried this differently? So Professor Alexander built Rat Park. It is a lush cage where the rats would have colored balls and the best rat-food and tunnels to scamper down and plenty of friends: everything a rat about town could want. What, Alexander wanted to know, will happen then?
In Rat Park, all the rats obviously tried both water bottles, because they didn’t know what was in them. But what happened next was startling.
The rats with good lives didn’t like the drugged water. They mostly shunned it, consuming less than a quarter of the drugs the isolated rats used. None of them died. While all the rats who were alone and unhappy became heavy users, none of the rats who had a happy environment did.
At first, I thought this was merely a quirk of rats, until I discovered that there was — at the same time as the Rat Park experiment — a helpful human equivalent taking place. It was called the Vietnam War. Time magazine reported using heroin was “as common as chewing gum” among U.S. soldiers, and there is solid evidence to back this up: some 20 percent of U.S. soldiers had become addicted to heroin there, according to a study published in the Archives of General Psychiatry. Many people were understandably terrified; they believed a huge number of addicts were about to head home when the war ended.
But in fact some 95 percent of the addicted soldiers — according to the same study — simply stopped. Very few had rehab. They shifted from a terrifying cage back to a pleasant one, so didn’t want the drug any more.
Professor Alexander argues this discovery is a profound challenge both to the right-wing view that addiction is a moral failing caused by too much hedonistic partying, and the liberal view that addiction is a disease taking place in a chemically hijacked brain. In fact, he argues, addiction is an adaptation. It’s not you. It’s your cage.
After the first phase of Rat Park, Professor Alexander then took this test further. He reran the early experiments, where the rats were left alone, and became compulsive users of the drug. He let them use for fifty-seven days — if anything can hook you, it’s that. Then he took them out of isolation, and placed them in Rat Park. He wanted to know, if you fall into that state of addiction, is your brain hijacked, so you can’t recover? Do the drugs take you over? What happened is — again — striking. The rats seemed to have a few twitches of withdrawal, but they soon stopped their heavy use, and went back to having a normal life. The good cage saved them. (The full references to all the studies I am discussing are in the book.)
When I first learned about this, I was puzzled. How can this be? This new theory is such a radical assault on what we have been told that it felt like it could not be true. But the more scientists I interviewed, and the more I looked at their studies, the more I discovered things that don’t seem to make sense — unless you take account of this new approach.
Here’s one example of an experiment that is happening all around you, and may well happen to you one day. If you get run over today and you break your hip, you will probably be given diamorphine, the medical name for heroin. In the hospital around you, there will be plenty of people also given heroin for long periods, for pain relief. The heroin you will get from the doctor will have a much higher purity and potency than the heroin being used by street-addicts, who have to buy from criminals who adulterate it. So if the old theory of addiction is right — it’s the drugs that cause it; they make your body need them — then it’s obvious what should happen. Loads of people should leave the hospital and try to score smack on the streets to meet their habit.
But here’s the strange thing: It virtually never happens. As the Canadian doctor Gabor Mate was the first to explain to me, medical users just stop, despite months of use. The same drug, used for the same length of time, turns street-users into desperate addicts and leaves medical patients unaffected.
If you still believe — as I used to — that addiction is caused by chemical hooks, this makes no sense. But if you believe Bruce Alexander’s theory, the picture falls into place. The street-addict is like the rats in the first cage, isolated, alone, with only one source of solace to turn to. The medical patient is like the rats in the second cage. She is going home to a life where she is surrounded by the people she loves. The drug is the same, but the environment is different.
This gives us an insight that goes much deeper than the need to understand addicts. Professor Peter Cohen argues that human beings have a deep need to bond and form connections. It’s how we get our satisfaction. If we can’t connect with each other, we will connect with anything we can find — the whirr of a roulette wheel or the prick of a syringe. He says we should stop talking about ‘addiction’ altogether, and instead call it ‘bonding.’ A heroin addict has bonded with heroin because she couldn’t bond as fully with anything else.
So the opposite of addiction is not sobriety. It is human connection.
When I learned all this, I found it slowly persuading me, but I still couldn’t shake off a nagging doubt. Are these scientists saying chemical hooks make no difference? It was explained to me — you can become addicted to gambling, and nobody thinks you inject a pack of cards into your veins. You can have all the addiction, and none of the chemical hooks. I went to a Gamblers’ Anonymous meeting in Las Vegas (with the permission of everyone present, who knew I was there to observe) and they were as plainly addicted as the cocaine and heroin addicts I have known in my life. Yet there are no chemical hooks on a craps table.
But still, surely, I asked, there is some role for the chemicals? It turns out there is an experiment which gives us the answer to this in quite precise terms, which I learned about in Richard DeGrandpre’s book The Cult of Pharmacology.
Everyone agrees cigarette smoking is one of the most addictive processes around. The chemical hooks in tobacco come from a drug inside it called nicotine. So when nicotine patches were developed in the early 1990s, there was a huge surge of optimism — cigarette smokers could get all of their chemical hooks, without the other filthy (and deadly) effects of cigarette smoking. They would be freed.
But the Office of the Surgeon General has found that just 17.7 percent of cigarette smokers are able to stop using nicotine patches. That’s not nothing. If the chemicals drive 17.7 percent of addiction, as this shows, that’s still millions of lives ruined globally. But what it reveals again is that the story we have been taught about The Cause of Addiction lying with chemical hooks is, in fact, real, but only a minor part of a much bigger picture.
This has huge implications for the one-hundred-year-old war on drugs. This massive war — which, as I saw, kills people from the malls of Mexico to the streets of Liverpool — is based on the claim that we need to physically eradicate a whole array of chemicals because they hijack people’s brains and cause addiction. But if drugs aren’t the driver of addiction — if, in fact, it is disconnection that drives addiction — then this makes no sense.
Ironically, the war on drugs actually increases all those larger drivers of addiction. For example, I went to a prison in Arizona — ‘Tent City’ — where inmates are detained in tiny stone isolation cages (‘The Hole’) for weeks and weeks on end to punish them for drug use. It is as close to a human recreation of the cages that guaranteed deadly addiction in rats as I can imagine. And when those prisoners get out, they will be unemployable because of their criminal record — guaranteeing they with be cut off even more. I watched this playing out in the human stories I met across the world.
There is an alternative. You can build a system that is designed to help drug addicts to reconnect with the world — and so leave behind their addictions.
This isn’t theoretical. It is happening. I have seen it. Nearly fifteen years ago, Portugal had one of the worst drug problems in Europe, with 1 percent of the population addicted to heroin. They had tried a drug war, and the problem just kept getting worse. So they decided to do something radically different. They resolved to decriminalize all drugs, and transfer all the money they used to spend on arresting and jailing drug addicts, and spend it instead on reconnecting them — to their own feelings, and to the wider society. The most crucial step is to get them secure housing, and subsidized jobs so they have a purpose in life, and something to get out of bed for. I watched as they are helped, in warm and welcoming clinics, to learn how to reconnect with their feelings, after years of trauma and stunning them into silence with drugs.
One example I learned about was a group of addicts who were given a loan to set up a removals firm. Suddenly, they were a group, all bonded to each other, and to the society, and responsible for each other’s care.
The results of all this are now in. An independent study by the British Journal of Criminology found that since total decriminalization, addiction has fallen, and injecting drug use is down by 50 percent. I’ll repeat that: injecting drug use is down by 50 percent. Decriminalization has been such a manifest success that very few people in Portugal want to go back to the old system. The main campaigner against the decriminalization back in 2000 was Joao Figueira, the country’s top drug cop. He offered all the dire warnings that we would expect from the Daily Mail or Fox News. But when we sat together in Lisbon, he told me that everything he predicted had not come to pass — and he now hopes the whole world will follow Portugal’s example.
This isn’t only relevant to the addicts I love. It is relevant to all of us, because it forces us to think differently about ourselves. Human beings are bonding animals. We need to connect and love. The wisest sentence of the twentieth century was E.M. Forster’s — “only connect.” But we have created an environment and a culture that cut us off from connection, or offer only the parody of it offered by the Internet. The rise of addiction is a symptom of a deeper sickness in the way we live — constantly directing our gaze towards the next shiny object we should buy, rather than the human beings all around us.
The writer George Monbiot has called this “the age of loneliness.” We have created human societies where it is easier for people to become cut off from all human connections than ever before. Bruce Alexander — the creator of Rat Park — told me that for too long, we have talked exclusively about individual recovery from addiction. We need now to talk about social recovery — how we all recover, together, from the sickness of isolation that is sinking on us like a thick fog.
But this new evidence isn’t just a challenge to us politically. It doesn’t just force us to change our minds. It forces us to change our hearts.
Loving an addict is really hard. When I looked at the addicts I love, it was always tempting to follow the tough love advice doled out by reality shows like Intervention — tell the addict to shape up, or cut them off. Their message is that an addict who won’t stop should be shunned. It’s the logic of the drug war, imported into our private lives. But in fact, I learned, that will only deepen their addiction — and you may lose them altogether. I came home determined to tie the addicts in my life closer to me than ever — to let them know I love them unconditionally, whether they stop, or whether they can’t.
When I returned from my long journey, I looked at my ex-boyfriend, in withdrawal, trembling on my spare bed, and I thought about him differently. For a century now, we have been singing war songs about addicts. It occurred to me as I wiped his brow, we should have been singing love songs to them all along.
The full story of Johann Hari’s journey — told through the stories of the people he met — can be read in Chasing The Scream: The First and Last Days of the War on Drugs, published by Bloomsbury. The book has been praised by everyone from Elton John to Glenn Greenwald to Naomi Klein. You can buy it at all good bookstores and read more at www.chasingthescream.com.
Johann Hari will be talking about his book at 7pm at Politics and Prose in Washington DC on the 29th of January, at lunchtime at the 92nd Street Y in New York City on the 30th January, and in the evening at Red Emma’s in Baltimore on the 4th February.
The full references and sources for all the information cited in this article can be found in the book’s extensive end-notes.
I suggested Women on 20s add Lyda Conley, about whom this much is known:
Eliza Burton “Lyda” Conley (ca. 1869 – 1946) was an American lawyer of Native American and European descent, the first woman admitted to the Kansas bar. She was notable for her campaign to prevent the sale and development of the Huron Cemetery in Kansas City, now known as the Wyandot National Burying Ground. She challenged the government in court, and in 1909 she was the first Native American woman admitted to argue a case before the Supreme Court of the United States.
Barbara said she would add Lyda to the “Hall of Fame” once the campaign steadies, then I asked if I might post her response. She edited and said, “Yes.” So this was her response and I think it is important to read and understand where she, et al, were coming from in the original Women on 20s campaign to get a woman’s image on the 20 dollar bill:
Thank you so much for your blog post. I just wanted to take a moment to clarify some things so that our campaign is best understood.
Actually, we never said we were unable to find Native American or Latinas. And it wasn’t just two women that developed the “slate” With so many women to chose from, we needed a way to evaluate the over 100 possible candidates. We came up with a method that scored candidates on a scale of 1-10 based on two criteria. The first criteria was the candidates’ impact on society which was weighted more heavily than the second criteria , obstacles they had to overcome to achieve their goals or if they were a pioneer in their field. We had a “caucus” of approximately 100 historians and professionals weigh our candidates along these lines We did not arbitrarily select anyone specifically for their ethnicity, sexual orientation, preference or race. The only factor was that they be an American woman, which we realized in the process had to be deceased for at least two years. This is explained on the website page:http://www.womenon20s.org/the_process and a list of 15 runner ups can also be found there.
We certainly did want to have Latina and Native American Women on our slate.
Gloria Anzaldúa, died a few years ago, very beloved and influential feminist. Luisa Capetillo, a lesser known socialist Puerto Rican feminist from early 20th century. Cristina Mena was not quite a feminist, but early 20th century Mexican American woman writer. Other earlier figures include Jovita Idar and Maria Ruiz de Burton. All of these women were great, but none of them really met the base criteria. Had we had a criteria that said that we must have a Latina for just the reason she is a Latina, we would have jeopardized the entire campaign for what would be seen as tokenism. As a Cuban American woman, I did want a Latina badly to be on our list. For me, I am taking great pride in many Latinas that are leading the way and are still serving our nation and will surely be remembered for all their efforts to help create a more equal and fair nation, dozens including Sonia Sotomayer, Martha Cotera, Dolores Huerta and am so happy that they are leading the way today still.
As for Native Americans,Wilma Mankiller emerged from the dozens to the top 30. Her impact was huge to a smaller group, albeit a key constituency and one which this very campaign hopes to heal in some way with the removal of a person responsible for the death and suffering of tens of thousands, indeed an entire people. Sacagawea, also was named two years ago on the list to be considered, but did not make it through, not because she was on a coin, as that is but another form of tokenism , but because her impact was not as significant as the contributions of others.
We can have just so many women on our list. If you find a glaring omission, please let me know
We are hoping that all this dialog can insure that we are equal sisters, in every wayl. This is not a beauty competition, nor any competition at all. We are also hoping that we can have a place on our site as a Hall of Fame for all sisters.
Yes, many are left out, because we have just so many we can nominate. Thank you
Barbara Ortiz Howard
Stay in touch and get out the vote so that at least we can have our voice heard !
#ActuallyAutistic - An Aspie obsessed with writing. This site is intend to inspire through sharing stories & experiences. The opinions of the writers are their own. I am just an Autistic woman - NOT a medical professional.