Wagner is an award-winning poet, author and artist who wrote WE MAD CLIMB SHAKY LADDERS, poems about her life with the mental illness, schizophrenia, and co-author, with her sister, a psychiatrist, of DIVIDED MINDS: Twin SIsters and their Journey through Schizophrenia, a memoir, which was a finalist for the Connecticut Book Award and won the NAMI Outstanding Literature Award in 2006. Her work has been published in Tikkun, Midwest Poetry Review, and the New York TImes Sunday Magazine as well as the Hartford Courant and the LA Weekly, among other places. She also won an international poetry competition sponsored by the BBC in 2001/2. Her newest book of poetry, is available for publication.
Her art was on display in Connecticut area libraries in 2011 and 2012 and is always available for sale and donation. She currently lives in Vermont. Her second poetry book including art, LEARNING TO SEE IN THREE DIMENSIONS will soon be published by Green Writers Press and Sundog Poetry.
Recently a friend wrote to me that she was exhausted with worry about whether the future would work out as she wanted it to. She has many concerns and young sons to generate a lot of worries, so i sympathize completely. Nevertheless, this is what i wrote to her and more…
Remember that there are plenty of futures out there and we have absolutely no way of knowing which one will come to us as the present, not until it is the present. So you can spend your time worrying in the present about a future you cannot change by worrying about it (can you?) or you can choose to ENJOY THE FUTURE now by assuming that it will all work out beautifully. That means of course, that freed from worrying about a disastrous outcome, you will enjoy the present, too. Yes, it is possible that what comes will bring disaster, but that pain will be of its time and place alone. You won’t have spent all the weeks and months leading up to it also in pain, dreading what your worry could not possibly change. If disaster does happen, but you spent all that time anticipating the best possible outcome, then guess what? You enjoyed your life, and if disaster happens you can say, well, so this is disaster, but i did not waste my life in fear, worrying myself sick anticipating it. No, no, i enjoyed every minute of a different future that may not have happened, but i lived life to the fullest. Now, life changed but i don’t regret a thing!
I believe that people who can enjoy the best future imaginable also build resilience to the worst future that becomes present in their lives, and in a feedback loop they end up never facing the worst outcome, because in the simple process of facing it, and facing it down, they have already begun to overcome it. But they could not do this without learning the skills of enjoying the best possible future now, instead of worrying. This is how they have become resilient and their resilience feeds back and makes them even stronger when like everyone else, challenges do come their way.
You can do it. You can stop worrying today. You can stop that flow of tormenting thoughts that say xyz is going to happen to ruin everything. How? Not by stopping them but by replacing them with daydreams that are far easier and better. You know how some teachers used to scold the class daydreamer and tell him or her to come back to reality and Stop daydreaming?! Well, i am going to say the opposite: when you are worrying yourself sick, start day dreaming instead, start fantasizing about the dreamiest most glorious future you can give yourself, and then goddam it, give it to yourself! I mean this. Start believing that that future is real and think about you would act and be “if you really knew this” it would change you, wouldn’t it? Well…be that future, enjoy that future as if you know right here and now that it will be on your plate at such and such a time…i promise you, you will enjoy your present so much more than you ever did worrying! And who knows, instead of Not paying the mortgage on time (your worry) you just might end up buying a boat as well as owning your home free and clear (your fantasy)…but even if not, you have not lost anything but your misery. And that, my friend, is a very good thing to lose.
Just want to keep people aware that these things are absolutely continuing to this day. They have not stopped persecuting psychiatic patients just because YOU dont hear about it. Every single thing in this post has happened to me within the last five years, and is still happening to others. Remember, and dont forget it! Your relatives may not talk about it, but it is happening to someone.
“If tomorrow, women woke up and decided they really liked their bodies, just think how many industries would go out of business.” – Dr. Gail Dines
A mother comes home after a stressful day at work with many tiny worries racing through her mind. She pulls in the driveway and opens the garage door to see her 16-year-old daughter hanging from the rooftop, lifeless, dead, from suicide. She was too fat, so she developed an eating disorder, then was too skinny and “sick” and eventually she gives her reason in a note that is summed up with the words, “soon the pain will be gone.”
Who is at fault? The parents, counselors, school, bullies at school? Partially, all of the above are to blame. But the greater culprit that allows this to continue is the media and beauty industry.
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.
I thought we were all taught the fundamental moral principles, not to lie, cheat, steal or murder. And that people who do so are wrong, and people who do so on principle are immoral. Well, i am going to go it one stronger and tell it like it is: what Trump is doing to the world, and with the Republicans’ encouragement and cheering, is nothing less than EVIL.
I refuse to blind myself to this any longer. They are so filled with greed and selfishness that they will not even rein in the obvious corruption in Trump’s cabinet, but wink, blink and let everything go that they would have screamed bloody murder about had a hint of the tint of it even slightly shadowed a democratic appointee. But now when they are poised to make a financial and gluttonous killing –LETS GO BACK TO IRAQ AND TAKE THE OIL!– they could not care less. Why? Because republicans HAVE NO MORALS, fundamentally, they do lie, cheat and steal for greed’s sake. All they care about is money and getting more for ME ME ME…THOSE SELFISH GLUTTONOUS BASTARDS. i am so sick of the greed and and selfishness it just makes me want to vomit, watching them slaver over the spoils of the American energy-fest. “Lets rape the environment, lets rape the women, lets rape and eat eat eat!!!” I can hear them snarl in their terrifying cannibalistic glutonny.
Gone is any pretence of beng the Moral majority. They dont give a fucking shit about anything, now that it is a gimme gimme free for all. This is CHRISTMAS FOR SELFISHNESS, AND BIRTHDAYS ALL ROLLED INTO ONE! Gimme gimme gimme, and every republican for himself…dont let anyone into the boat except the rich and glutonnous with their sacks of food! Ŷou see?
The emperor never did have any clothes! He is just another apeman, wanting more meat and meat and meat ,….gimmegimme gimme, that is all the republicans have to say.GIMMe gimme gimme more.
“Fill my trough, first and more and better than everyone else, ” that is all the republicans cry because the brakes are off and they can take and get all that they have ever wanted so they are going to STUFF THEIR FACES TILL THEIR PAUNCHES BURST AND FUCK THE COUNTRY!
This miniature scene from Tuscany was painted on an up-cycled shoe polish tin, with acrylics, and metallic paints. The tin was also lined with velvet cut from a cast off dress I had been saving to use for such things. c 2.5 ” in diameter. (I have really crappy brushes that splay out all the time and with stray hairs, so it is hard to get any details correctly but one of these days I will have the luxury of decent brushes and then watch out!!!)
Southwest Airlines kicks Muslim off a plane for saying ‘inshallah’, meaning ‘God willing’ in Arabic
A Muslim man was told to leave a Southwest Airlines flight after another passenger overheard him speaking Arabic on his mobile phone.
Khairuldeen Makhzoomi, a 26-year-old Berkeley graduate, was removed from the plane at Los Angeles International Airport in April this year.
Once seated, he had made a brief call to his uncle in Baghdad, telling him how excited he was to ask a question to the UN secretary-general, Ban Ki-moon, during a dinner the previous day.
Before hanging up, he said the Islamic phrase in Arabic of “inshallah”, meaning “God willing”.
He noticed a woman staring at him as he hung up the phone. He thought at first she had been irritated by how loud he was speaking.
“One guy came with police officers within two minutes — I can’t believe how fast they were — and told me to get off the plane,” he told CNN.
An agent escorted him outside and asked him why he was speaking in Arabic considering “today’s political climate”.
“You need to be very honest with us with what you said about the martyrs. Tell us everything you know about the martyrs,” the agent said to him.
The political science graduate explained he had only said “God willing”, and the questioning soon ended – but not before dogs were brought in to sniff his luggage, he was searched and his wallet was taken away.
“The US is the land of freedom. People respect the rule of law. How could people be humiliated like this? That was the real shock,” he told The Independent.
“I lived under Saddam Hussein. I know what discrimination feels like,” he added.
Mr Makhzoomi came to the US in 2010 as a legal refugee with his older sister.
He was not allowed to reboard the Oakland-bound plane, and was given a full refund. He booked another flight with Delta.
Southwest Airlines spokeswoman Brandy King said in a statement that staff had decided to investigate “potentially threatening comments” made by the passenger.
“Since that time, we have researched the event internally and also reached out to the customer.
“The internal review determined that it was the content of the conversation, not the language used, that prompted the report leading to the investigation. Our crew responded by following protocol, as required by federal law, to investigate any potential threat. We regret any less than positive experience a customer has on Southwest. Southwest neither condones nor tolerates discrimination of any kind.”
The student said he was left feeling “shaken” and could not sleep for days afterwards. He has called on the airline to apologise since they have failed to do so since 6 April.
The Council on American-Islamic Relations (CAIR) has filed a complaint with the US Department of Transportation Office of Aviation Enforcement and Proceedings against Southwest Airlines for “racial and religious profiling of a Muslim passenger”.
“We don’t want this to become ‘normal’,” said Saba Maher, civil rights coordinator of the local CAIR chapter.
“We are looking for a federal investigation and for the Department of Transportation to hold Southwest Airlines accountable.”
Mr Makhzoomi said he is applying for his masters and is grateful that the US has provided him with “the best education, and so many opportunities”.
“This our home. We don’t have another home. The experience [in April] was just unpleasant,” he said.
More about: CAIRBerkeleyCaliforniaAnti-MuslimSouthwest Airlines
Now, in this same light, due to recent incidents directed against Muslim women, acts of violence or vitriolic speech just because they happened to wear a hijab, or the religious headscarf that marked them as Muslim, i have started a Facebook group and page of similar name called WEAR A HEADSCARF ON JANUARY 20th…IN SOLIDARITY WITH OUR MUSLIM SISTERS.
Please do not accuse me of supporting ” a religion that oppresses women” by these acts. I do not know that true Islam oppresses women any more than christianity has the face of the likes of soon to be Vice president Pence . I would venture however that his brand of Christianity is just as women-oppressive as any radical Islamic woman-hating sect. The thing is, this is not about someone’s beliefs about women. This is about the freedom of any person, whoever they are, to believe what they want to and dress accordingly, and to not be attacked either physically or verbally because of their beliefs.
i know what it is like to be abused because of things i said and believed that others felt were “unacceptable” to them…and they had more power than i did, the power to physically hurt me and force me to comply with their norms. But now that i am a freed citizen i will never let someone else suffer as i did without standing up for their rights to wear what they want to and believe whatever they want to, so long as it does not hurt others. And you know, so far as i can tell, Absolutely nothing in Islam is innately more harmful to me or to anyone than christianity is at the present time.
So please join me and WEAR A HEADSCARF ON JANUARY 20th, stand up against bigotry and stand up in solidarity against the forces of Hatred in Trump’s government and cabinet. Dont let hate trump the forces of love and generosity. Stand up and wear a headscarf for all the kindness and generosity and compassion that we have always stood for. Stand up and be counted!
Just for starters, here is a photo of me, “brazenly covered” by my January 20th inauguaration headscarf:
Sorry these photos below are so terrible (I got the better ones above and inserted them later) but I had to photograph the computer screen to show you what these sneaks are “like” before you click the link to take you there…Pretty cool, eh? All the products in my Zazzle store are designed by me, from my own artworks. I don’t know how long I will keep anything up for sale there though, because it is grotesquely consumeristic, so if you happen to want a pair of Wild Artist Sneakers, I would purchase a pair now, while I still offer this design.
All i can say is everything in this picture was as deliberate as i know how to make it, without planning it at all, and it contains symbolism both public and private. With reference to my signature quotation, (see below) it makes use of what the negative spaces offered me without leaving any in the end. “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 (for those who are not familiar with WWII, over the gates over Auschwitz, the notorious concentration camp where Jews and many other despised groups were taken to be tortured and killed, were emblazoned the words: ARBEIT MACHT FREI, or “work will set you free,” which was of course a lie and a horrible joke, because it was only meant to kill you at what was not a labor camp but just a death camp. ) PSYCHIATRIE MACHT FREI?
All i can say is everything in this picture was as deliberate as i know how to make it, without planning it at all, and it contains symbolism both public and private. With reference to my signature quotation, (see below) it makes use of what the negative spaces offered me without leaving any in the end.
“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
(for those who are not familiar with WWII, over the gates over Auschwitz, the notorious concentration camp where Jews and many other despised groups were taken to be tortured and killed, were emblazoned the words: ARBEIT MACHT FREI, or “work will set you free,” which was of course a lie and a horrible joke, because it was only meant to kill you at what was not a labor camp but just a death camp. )
PSYCHIATRIE MACHT FREI?
Psychiatrie Macht Frei? Mixed media anti-psychiatry picture, 24″by 19″
I know the basic science, but the problem (so they tell us) is that the products are NOT safe and are not given at safe ages. Hepatitis B at birth?! Why? (That might be a good question) But not all vaccines are even efficacious. (How would we know that?) Plus we are making trivial diseases more dangerous. (We are?) You wonder why there are so many allergies and so much asthma in children? (Yes I do) And okay, why is autism astronomically increasing? WHY is it??? Watch this movie and then, yes, take a look further at the new film VAXXED.
(I did and I was taken, and taken in..and still am perplexed as to what the F is going on…Who is right and who is in the gd dark??? All i know is I have always believed in the science of vaccines, ever since I read about Jenner and cow pox as a child; way before Big Pharma had anything to do with anything. So I do not blame Jenner for anything…
Watch this movie but DO NOT CHECK YOUR REASON AT THE DOOR…Okay? Think, think think and question everything, then do your own research. Remember you are biassed even when you believe you are not. Do not take anything at face value or for granted…And question everything told to you as dogma. Especially when presented as DOGMATIC TRUTH but not backed by any proof. Remember: correlations are not causes.
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.
Dear Dr Joseph Lasek, as a recent Alyssum guest, i loved your testimonial on the Alyssum website. Your compassionate writing painted an entirely different picture of the man who just a year ago signed an order refusing to release me, a woman who had not been able to speak aloud for days, (indeed i have a history of having been completely mute for months at a time) from 5- point restraints until i spoke out loud.
Yes, the nurse Annette Brennan wrote that order, and informed you not only that i could speak but that i “refused to” and so you, yourself told me in no uncertain terms, that i would remain in restraints until i obeyed your orders.Despite lying quietly and complying with the restraints, triggering an assessment every 15 minutes, your staff refused to ask me the necessary questions to remove even one restraint and left me alone in that room, time after time, motionless and mute, all because they and you had decided to force speech out of me.
Why? Did you believe you had the right to do this? What had i done to you to make you so angry with me? Why didn’t i have a right to communicate however i chose to or needed? I understand that you believed that i *obstinately* refused to speak to you…and you may continue to choose to hold that belief. I cannot change how you think and i refuse to defend my muteness in the face of your ignorant assumptions.
What i will assert is that the use of restraints has never been or should never be about the power you hold over one of your patients, and it should never be about your power to force a patient in restraints to do something you want her to do. In most parts of the world, and in most people’s minds, for you to force me, by means of physical coercion, to speak out loud would be called torture. What else is it?
What did it matter really why i did not speak? So what if i was obstinate, or unable to form words…neither reason matters a fig. Your only justification in keeping me restrained was if you knew or had determined by communicating with me that i was a danger to myself or others. But time and again, you did not even try to find that out, no.
You assumed things, yes, you assumed that if i kicked the nurse, whose groin inappropriately pressed against my bare feet, a sexual maneuver on her part, that i was aggressive. But you refused to ask me what happened or how i felt or what was going on. You used none of your apparently great capacity for empathy when it came to finding out from me what was going on and how to end the situation as quickly as possible (as you claimed was your desire).
If you really wanted me out of restraints asap, why did you refuse to let me communicate in any fashion except speech. You would not even phrase your sentences in such a fashion that i could answer them with a shake or nod of my head.
So this went on for hours, my frustration and anxiety growing since i was told you refused me even 1/2 mg of Ativan for sleep, for mercy sake. Finally nurse Manusukhani asked me the safety questions at 5:00 am and i answered them all, still mute, but satisfactorily. But the restraints were not removed. No, i was left alone for another hour. When the nurses returned they wanted me to write an essay with a safety plan with one hand, upping the humiliation and degradation till i could not take it any more. I simply shut down and refused.
You won, then. You broke me. I have suffered from that torture every day since that night, a year ago. i did not speak aloud that night, and the next shift took me out of the restraints even though it contravened your orders, because they understood it was an illegal order.
How did you feel about that, feel thwarted, angry? Probably, since you had not been able to successfully break me, break my back and force me to speak…sorry, sorry sorry,
The thing is, my speaking had nothing ever to do with you nor my refusal to speak, that was always only your interpretation. Alway only yours and the nurses interpretation. No one ever asked me why i did not speak, they just made assumptions and always they had negative connotations,,,
Why did they always think the worst about me? They knew nothing at all about me. Dr Malloy had never taken any history, and never talked to me, except to talk at me and dictate to me what he would do if i did not obey his orders. What did i do to deserve this? I had an advance directive before i came into VPCH. Did you ever see it before or during the time i was in restraints? It advises to never use restraints or seclusion as i will only get worse and be further traumatized, but it also provided multiple suggestions for what nursing staff can do instead of restraints or seclusion, none were tried in the minutes before Brennan brought that restraints bed into the room.
I think, from your Alyssum testimonial, that you are probably a very nice guy. I liked very much what you wrote there, and i think alyssum is a wonderful wonderful place. I will never go back to a hospital so long as alyssum, is available to me in any fashion. hospitals only and always torture me. People like you misunderstand and hate and torture me, and seem to get pleasure doing so. I do not understand why…
Now i have to tell you, if you have gotten this far, that i have filed a formal complaint against you with the board of medical practice. If i had been been permitted to speak with you and nurse Brennan and the others face to face and use non violent communication techniques to resolve what happened between us, maybe i would not have had to do so. But the psychologist Elliott Benay would not get people to talk with me, as i proposed and instead told me to do what i had to do.
So complaints were filed and the hospital has already been cited for violation of my rights. What will happen will happen. It wont be bad for you, as you can imagine, nothing bad ever happens to doctors, who always walk away from their misdeeds with a slap on the wrist with a wet noodle; their patients suffer the agonies of hell or iatrogenic illness,you know this or you ought to. I dunno what else to say, you are likely preparing a mental defense of yourself and your actions even as you read this, rather than seeing that perhaps i write the truth, and preparing an apology that might go a long way towards healing the suffering you caused me.
Do you think psychiatrists ever apologize for anything? No, i think it is something they cannot bring themselves to do, not to a patient, it would cost them too much pride and suffering, they would rather the patient suffered…
Nevertheless, I forgive you.
Sadly, forgiveness does not seem to heal or help my suffering, or not yet, possibly because i do not believe you will read this letter. Much less respond. Of course you will not respond, who am i but a stupid mental patient?
no, i will tell you who i am. I am a three-time author, one book of mine was a best selling memoir from St Martins Press for many years. I am also an artist and poet, who, if you will forgive me a tiny bit of pride, will one day be more famous than you ever will. Mark my words. *You* may never hear from me again personally, but someday you will see and hear my name often, just wait.
Sincerely, from the 63 year old woman you kept in 5-point restraints last November, because she could not speak.
Pamela Spiro Wagner
so i went to the commissioners hearing to appeal the APS unsubstantiated decision about Annette brennans part in the above, you can find my account of these events elsewhere in my blog if you do a search on VPFH…anyhow, she took umbrage at my asking her not to call me Pam but Miss Wagner, and rubberstamped the Aps results despite my lawyer arguing on my behalf and my presenting a half hour case…here is her decision, which says nothing about the hearing,
“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.
#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.