I want to reblog this brilliant post by Anne C. Woodlen and then i will add my own editorial comments if i can in a later post or edit. In the meantime, i think it speaks for itself and says just about what i would want to tell a lot of young people newly diagnosed with bpd or did or add or even bipolar disorder and getting on disability, preparing for a life “in the system” – it sucks and it isn’t worth it unless you are floridly psychotic. And even then, don’t believe what they tell you about antipsychotic drugs. There ain’t no such medication, only sedatives that may or may not quiet things down temporarily. The only way out is through, if you can do it with a wise and caring guide and community. Don’t get stuck as i am, on multiple antipsychotic drugs, addicted to them so that getting off them only means you get more psychotic than ever. Psychosis need not be a lifelong problem, but it certainly will be if you keep taking high doses of the drugs and never explore other options.
My name is Dustin and I live in Michigan. When I was seventeen years old my mother put me in a psychiatric hospital called Forest View. The abuse I felt violated me to the core! I felt like I was being raped having to submit to all the rules, the bullying and the emotional abuse. To have your dignity removed when you are an innocent patient and just want genuine, kind, gentle care, and get unprofessional jerks who you can tell are fake and just care about getting paid is a horrible experience. If anything it only caused me more traumas with the trauma that I already had. I am now twenty-two years old and live on disability while also living my life as a hermit because now I am afraid of people due to the awful treatment I endured. I was diagnosed with Borderline Personality Disorder by a REAL…
As my time here comes to an end, I will miss it and my neighbors terribly., I don’t know what I will do without them, and Lydia my wonderful companion. Returning to Connecticut with its horrible hospitals and indifferent treatment just feels like a disaster waiting to happen. I want to move to Vermont but I don’t know how I can make that happen. I have felt amongst friends everywhere here, but isolated completely for years in CT, despite my lovely dear friends there, I wish I could bring them all up to VT with me!
Connecticut Hospitals Responding to Psychiatric Restraint Numbers
By DAVIS DUNAVIN
“They don’t want you to get out. They pull [restraints] as tight as possible to the sides of the bed.” Pamela Spiro Wagner
Pamela Spiro Wagner’s apartment is full of art she’s made while in psychiatric care. One piece dominates the room. It looks like a painting at first. It shows a threadbare seclusion room and a restraining bed.
“That’s made of Vogue magazines. If you look at it, you’ll see there’s a little label of Prada leather on the leather restraints, which was done on purpose,” Wagner said. She made it while alone in a hospital seclusion room. The magazines were the only art supplies she had.
Wagner has schizophrenia. She’s been in and out of Connecticut hospitals for decades, and she knows what it’s like to be restrained. “They use leather, or rubber, or plastic, or whatever restraints that they wrap around your wrists, usually tight because they don’t want you to get out. They pull them as tight as possible to the sides of the bed,” she said.
Wagner was put in four-point restraints. That means each limb is bolted to the bed, and she said she’s stayed there for nearly a day at a time. “I would just scream from the base of my lungs,” she said, “like the screams that if you had any heart, your heart would break if you heard me scream.”
“Restraint is Pretty Traumatic”
Patricia Rehmer, Commissioner of the Connecticut Department of Mental Health and Addiction Services, said the department has cut down on restraint since receiving a federal grant in 2008. “We know,” she said. “The literature is clear; the clients are clear. Seclusion and restraint is usually a pretty traumatic event. If we had our way, there would be no seclusion and restraint. We’d love to get to zero, but that’s not always possible.”
The Department of Mental Health and Addiction Services oversees state hospitals in Bridgeport, New Haven, Hartford, and Middletown. Rehmer said that because patients stay longer at state hospitals, doctors and nurses have more time to work with them on ways to avoid restraint. “Frankly, there are differences between our hospitals, our hospital beds, and general hospital beds, for example,” she said.
Restraining or secluding patients used to be commonplace in psychiatric facilities, but ten years after a series of deaths nationwide, there’s been a push to lessen the time patients spend restrained. Federal data released earlier this month showed that Connecticut’s rates of restraint are still high compared to most of the country – more than double the national average. The state ranks eleventh nationwide, and third for use of restraints among the elderly.
Connecticut Institutions Adapt
Bridgeport Hospital topped the list statewide. The hospital has a large geriatric unit, and the numbers were high for elderly patients.
“We realized about a year and a half ago that we were really having a problem,” said Ryan O’Connell, Bridgeport Hospital’s vice president of performance and risk management. He pointed out that the numbers only go up to the middle of 2013, and said that the hospital started changing its practices since then. “It was much more common for us to go to some type of restraint,” he said.
O’Connell said the image of the barren room and four leather straps is all wrong at Bridgeport. They’re mostly trying to keep patients with dementia from wandering off and into danger. “I think it’s really important,” he said, “that nobody thinks that we were tying people down [by their] hands and feet.”
Bridgeport is moving toward something called comfort rooms, with colorful wallpaper, toys, games, or comfortable furniture. They’re becoming common alternatives in a lot of institutions, like Connecticut Valley Hospital in Middletown — a state hospital that cut back on using restraints by about 88 percent in the past decade.
In 2002, a patient died after being restrained at CVH. The hospital conducted investigations after the death, but Director Charles Dike said they’d already decided to make a change before it happened. “Our target is to make sure we use it as sparingly as possible, only when it is absolutely necessary, and that we discontinue it as quickly as possible,” he said.
CVH started using comfort rooms years ago. Dike said that instead of putting a patient in restraints, they try to encourage a patient to spend a little time alone doing something relaxing. He said, “If somebody says to me, when I’m not doing so well, I like to go into my room and play music, and that helps me calm down…” He said that nurses will remember, and bring it up if the patient starts to lose control.
Dike doesn’t expect to stop using restraints. He said there will always be outliers — patients who come straight from emergency rooms and prisons.
Ellen Blair is the nurse director at Hartford’s Institute of Living, which is part of the Hartford Hospital system. Figures for 2013 show Hartford Hospital restrains patients at a little over the state average, but she said they’ve cut back since then thanks to new training programs and more comfort rooms.
Blair said that when a patient does go into restraints, they’re looked after. “I personally go and make sure I know that patient,” she said. “We all talk about it at least every couple of hours, because we don’t want to keep it going any longer than we have to.” She said patients aren’t left alone, and that restraint is only used as a last resort when patients are dangerous to themselves or others.
“Every day,” Blair said, “we come here thinking, okay, we’re going to have a good day. We’re going to prevent people from getting agitated and having to go to that level.” Restraint, however, remains a last resort these hospitals said they don’t plan to take off the table entirely.
Pamela Spiro Wagner:
Dear John Dankosky,
Thanks for posting both my earlier comments.
I must tell you that I still think your piece assiduously avoided saying anything that implicated Hartford Healthcare, and ultimately portrayed all the hospitals (NPR sponsors naturally) in a golden light. When Ellen Blair, the IOL nurse manager, stated that “every two hours” the Hartford Hospital Institute of Living nurses discuss any patient in restraints did you really recognize that this means a given patient remains in restraints? NO patient should still be in restraints after two hours, it just isn’t necessary. You should be aware that when a patient is mechanically restrained it also means that he or she has been injected in the buttocks with chemical restraints or emergency medications (though staff will never call the forcibly injected drugs by such a name as a “chemical restraint”). This is a given, but it means that the patient is almost always asleep after two hours or most certainly calm, if they were indeed truly and emergently dangerous in the first place. At the IOL, however, if he or she has not spoken the verbal “Uncle!” that is required, the nurses will not take restraints off. How can you say “I promise to stay calm…” yadda yadda if you are asleep? Nevertheless, the strict CMS guidelines are that restraints must be removed as soon as a patient is calm and no longer a danger to self or others. It should be obvious that once a drug has sedated a patient the patient is not an imminent danger to anyone. (It might be argued that both “emergency medication” and restraints are overkill and that one OR the other should be used, never both.)
“Imminent” is the operative word in the criteria for restraints: a person must pose an “IMMINENT danger to self or others.” In my case I was never really a danger to anyone. I was simply a PIA…and the staff as much as said so. If you have read my other comments below, you will have understood that even the Centers for Medicare and Medicaid (CMS) as well as SAMHSA understand that seclusion and restraints are almost never necessary, despite what the doctors and nurses told your reporter and what you summarily reported as true. As I quoted from the document put out by SAMHSA in my comments, both restraints and seclusion are usually used in retribution or as the result of a power struggle which the institution necessarily “wins” when these methods are chosen…but are rarely used as the result of emergency situations.
I suspected that this was the sort of report that you would do. Yes, you gave me a kind of voice, or at least two sentences worth, about the trauma of restraints, but you never named the institutions that restrained me so viciously, though I did name them over and over in my interview. And you gave a much greater voice to those institutions attempting to whitewash their current practices… You did not actually investigate whether or not they do as they say. Or even whether what they say they do is in fact as benign as it is cracked up to be.
Think, think, think…Ellen Blair casually mentioned ”every two hours a person remains in restraints.” What, for four hours, six hours, 19 hours as she and her cronies kept me in restraints???…WHAT IS SHE THINKING???? NO ONE SHOULD BE IN RESTRAINTS SO LONG unless something brutal is going on. Even at New Britain General I was always taken out of restraints after 2 or 3 hours. Why? Because under the influence of the medications, I got sleepy and did as I was told…Yes, even though they were brutal they never kept me restrained longer than that. As soon as the requisite hours of punishment were up, I was allowed out. Period.
Hartford Hospital’s Institute of Living should be ashamed of itself, restraining and keeping someone in restraints when asleep and then re-injecting them with medication in order to put them BACK to sleep while still in restraints as they did to me time and time again.
You know, I would give you permission to see my entire chart from my 2013 Hartford Hospital stay, if you ever wanted to investigate these charges and find out whether what I say is true. I believe in fact that they do this sort of thing regularly at the IOL Donnelly building. I do not believe I am the only one. That is the problem, you see. This is a practice of theirs. I am NOT unique and was NOT singled out but rather treated brutally because this is how they do things at the Institute of Living and from what I gather from Ellen Blair, they are still doing it.
Whether NPR cares enough to hear or report what is really being said beneath the pretty words, or to find out the truth about what goes on inside these hospitals, I do not know…I tried to inform Davis Dunavin. I do know what happens because I have been inside many times, and it has happened to me. But you did not report even a smidgen of what I told him. So much for reporting the facts or even a portion of the whole truth.
I was restrained at Hartford Hospital’s Institute of Living in January 2013 for 19 hours at a time several times during a mere 3 week stay. And why? They told me repeatedly it was because “You do not follow directions.” The SAMHSA and CMS knows that restraints and seclusion are almost NEVER necessary. I quote from a SAMHSA publication: “Studies suggest that restraints and
seclusion can be harmful and is often re-traumatizing for an individual who has
suffered previous trauma…
“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.
“Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors that staff members are attempting to control or eliminate.”
When restraints and seclusion are used, certainly in my case, as my Psychiatric Advance Directive CLEARLY indicated, my symptoms always get worse, I regress to primitive behaviors and things go from a situation that might have been ameliorated with ease to something that only traumatizes me terribly (I already have PTSD on top of schizophrenia) and should traumatize any nurse who still has a heart.
When I heard via this broadcast Ellen Blair APRN say how much care they take at the IOL to avoid restraints there, I could have laughed. If so, why then would they restrain me for hours day after day for as little as tossing half a graham cracker at the wall in frustration. Indeed, if it took as few as a single nurse to put me, passive and non-resisting, into four point restraints, how could it possibly be “necessary,” except to teach me a lesson or punish me? But in fact, it was punishment most of the time, and nothing more. There was a power struggle that developed between meand Amy Taylor
MD, and she was determined to show me who was in charge. That was the problem. The only way I got out was because she took two days off, and a kindly substitute doctor took me out of restraints and asked me if I wanted to go home. I said yes,PLEASE, and that was that.
I would like to add that the image of the concrete barren seclusion room and leather restraint cuffs rather than being “dead” is alive and well in many CT hospitals. I was at the Hospital of Central Connecticut, the former New Britain General Hospital in May and June of this year, 2014, and their seclusion rooms were worse than a supermax prison cell. Literally. There were NO amenities there as there are in a supermax cell, no toilet, not even a bedpan. Just a concrete bed, with a rubberized mattress. And when they considered me “dangerous” to myself, they stripped me of all my clothing and left me naked, despite my desperate pleas for a blanket for protection against the air-conditioning which was always on full-bore.
Even the doctor, who put me there time after time, told me that “the nurses would never leave you without covering or a blanket.” He did not believe me when I told him that in fact this was their regular practice. Moreover, hospital security guards were the ones to strip me forcibly and then four-pont me still naked to a bare mattress, only covering me with a sheet when I begged for one.
It was the most horrendous experience I have been through since, well, since the Institute of Living in 2013. And they did this on multiple occasions, despite KNOWING from the first that I had come in with PTSD in addition to schizophrenia and that I had an Advanced Directive that gave clear instructions about what helped me calm down and how best to treat me in order to avoid escalating situations. What is worse, the policy at HOCC is that nurses are NOT permitted to touch or lay a finger on any patient,…ONLY security guards do that. And they grab any patient willy nilly, usually with the deliberate intent to inflict pain, as the nurses told me, because if they cause pain the patient will comply. This is, excuse me, crazy! There is something very very wrong with this picture…but the staff at HOCC was so encultured with their way of doing things, that they had lost sight of how wrong it was. It simply didn’t occur to them that guards hurting patients might be not only morally wrong but just plain ineffective if they wanted to help someone get better.
But maybe I am the one who is “nuts” thinking that HOCC staff cared about anyone “getting better” — maybe they just did their “jobs” and didn’t give a hoot in hell whether the guards deliberately injured patients or not, so long as the “job” whatever it was got done…
SECLUSION ROOMS, found in most psychiatric hospitals, too often look as if they were intended as temporary quarters for wild animals, or perhaps as storerooms for dangerous chemicals, rather than as shelters for sick and distressed humans.
Yet, the purpose of seclusion is clear and admirable. It is intended to reduce interaction following a rupture in interpersonal relationships between the patient who is being secluded and other patients, or members of the hospital staff.
Seclusion usually occurs when there has been acting out or a threat of it. While skilled psychiatric nurses can often handle such situations without using seclusion, it is proper that a patient, in an explosive situation, should have an opportunity to withdraw to a suitable spot to be alone for a time or in the company of someone he trusts.
When children quarrel with siblings or parents, they are often sent or asked to go to their room and be alone with toys and playthings. Adults retire to a bedroom, a study or even to the toilet. Although it was once common practice, it is no longer thought admirable to lock a child in a dark cupboard. In his own room, he gets comfort from his toys, just as an adult will soothe himself with a book, a pet animal, possibly with music, or just by being alone.
The mentally ill person, who has had a rupture of interpersonal relationships, likewise needs space under his own control where he can “pick up the bits.” The best place would be a room of his own, with familiar furnishings and his personal possessions easily visible. Wherever his retreat, it should give external stimulation as well as support and comfort.
Bare, Drab Rooms Affect Perception
Seclusion rooms in many hospitals are built to some stereotyped plan, and are poorly-lit, bare, drab rooms of a curious cube-like construction which makes them seem unduly high. There is little or no furniture, often only a mattress. Walls are usually tiled in one color only, and this sometimes white. Windows covered with heavy screening, ceiling lighting often high and remote beyond the patient’s control, heavy imprisoning doors sometimes the same color as the walls, and in the middle of the floor a brass grating over a drain hole―no wonder these rooms are suggestive and frightening. Such rooms strongly resemble the reduced environment described by Hebb* in which even well people can experience major 18 changes in thinking,. perception and mood, larked in certain non-experimental situations, notably brain washing, such environments are deliberately used. to. encourage alterations in perception. Surely then it is un-wise to place psychotic people in a situation which, since it will not afford them even minimal external stimulation, is likely to increase the perceptual disorder which many of them already have.
The need for sufficient stimulation, particularly of a visuo-auditory type, combined with carefully selected tactile and olfactory stimulation, is strongly suggested by Goldfarb’s recent work at the Ittleson Family Center with children. His work indicates that many schizophrenic children tend to inhabit a tactile-olfactory world, rather than the more common and culturally acceptable visuo-auditory one. It seems probable that schizophrenic adults may be in much the same position.
Clearly then we must provide our disturbed patient with an adequate amount of pleasurable visuo-auditory experience while in seclusion, and also let his environment be rich in socially acceptable tactile-olfactory pleasures, lest he seek the only remaining gratification―tactile-olfactory ones from his own body. Specifically, let us imagine a patient, greatly disturbed, shut up in a bare room, with bare walls, little or no clothing, and possibly only a mattress or blanket as furnishings. The visuo-auditory and tactile-olfactory enjoyments to be obtained from such surroundings are very small. Is it surprising, therefore, if his seclusion results in apsophilic (auto-erotic) activity, in the tactile experience of staff members or even in reviving a tactile and olfactory interest in his own body products of urine and feces?
These apsophilic activities, the touching and snuffling on the nursing staff, and the handling of feces and urine are likely to produce great anxiety and great resentment in those who must care for the patient. He will naturally interpret this as dislike and rejection, and a vicious circle is established. He is driven deeper and deeper into his tactile-olfactory experiences, and probably also into full hallucinatory experience. Since we are woefully short of really sophisticated staff, we must make .very vigorous efforts to see that this type of “reduced environment” seclusion is banished from the mental hospital as quickly as possible.
The seclusion room, therefore, must be not merely pleasant, but the very best room on any ward. There are several reasons for this. For one thing, if the room is pleasant, it will take away the idea of punishment―not merely by a verbal gesture, but by a change in the attitude of everyone on the ward, patients and nurses, who will both be far more impressed by the fact that the seclusion room is the best on the ward than if there is simply lip service to the effect that seclusion is not punishment. Money invested in making this room conspicuously better than other rooms “because it is for those who are the most unwell” will indicate to both nurses and patients that the hospital particularly concerns itself with those who are the sickest. The fact that the room is an object of pleasure and satisfaction to all the patients on the ward will exert considerable pressure on the disturbed patient to use this joint possession properly. This pressure will be extremely effective in preserving the room from damage.
Dimensions and Decor Important
What, then, should this “best room in the ward” be like? Particular attention must be given to its size and proportions. A small room of great height is extremely oppressive to most people. and if such a room must be used, perhaps a false ceiling should be built in. The lighting must be good, and must, at least in part, be under the patient’s own control. The walls should be pleasantly painted in bright and reassuring colors. There should be pictures on the wall, and a mirror (a metal or unbreakable mirror is permissible). The bed should be comfortable and the bed cover pleasant. Sheets, pillows and mattress must of course be provided. There should be chairs and a desk, the chairs self-colored and if possible, textured. Patterned material is best avoided, since it may have a disturbing, Rorschach-like effect. (Until we know more about the effect of patterns on patients’ perceptions, we should be cautious about patterned materials.) A carpet or rug, preferably nylon, should be on the floor, which may be of tile or linoleum, but should be light in color. To avoid uncertainty about the passage of time, a clock and a calendar should be clearly displayed. If a toilet cannot be readily available, a modern commode chair may substitute, if it is explained to the patient.
It is important here, as elsewhere in the hospital, for the furniture to be light, strong and elegant, rather than heavy or cumbersome. Heavy furniture quickly becomes a challenge to some patients to see if it can be broken. It encourages all patients to lose one of the most important skills which we all acquire in childhood―the ability to maneuver through complicated mazes of furniture. This ability includes all sorts of skills, especially subliminal psychomotor movement. Mental patients frequently lose this ability through disuse, and all too often the arrangements in the mental hospital give them no opportunity to re-acquire it, or what is even more important, to correct early the tendency to lose it. Experimental work shows that, given the opportunity, people frequently correct perceptual errors on their own. But a bare room, fitted with one massive piece of furniture affords neither encouragement nor motive for correcting an error of any sort.
In the seclusion room, the patient should have diversions from the very start. Games, books, perhaps a slide projector, a television or record player under his control are all possibilities. Cut flowers and potted plants should decorate the room. Writing materials should of course be available, and if the patient has difficulty in writing, as some psychotic people do, he might be provided with chinagraph (grease) pencils and an ample supply of paper. Part of the wall might be processed for drawing. which people sometimes find pleasant when they are upset. Plasticine and paint should be provided. A way might also be devised for the patient to brew his own coffee or tea. A tape recorder could be provided to allow the patient to hear his own voice, and get accustomed to the fact that he really is there, though this should be handled with caution, because some people find it rather a disturbing experience.
All these measures must, of course, be combined with friendly interaction with a member of the hospital staff, one with whom the patient feels comfortable and can speak freely, but who, like the room itself, will keep him as close to reality as possible.
In brief, the seclusion room is ideally a place where the patient, after a rupture in interpersonal relation-ships, can re-assert his adultness and recover his poise, rather than a place of punishment where he is treated like an abandoned child in a dark cupboard or a bear in a pit.
(See link to original article for photo of music therapy session.)
*Dr. Donald Hebb, McGill University, conducted experiments in which the subject was placed on a bed in an air-conditioned box with arms and hands restrained with cardboard sleeves and eyes covered completely with translucent ski goggles. Hallucinations and delusions of various sorts developed, mostly in those who could stay longer than two days. Many subjects left at about twenty-four hours
Go placidly amid the noise and haste, and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery.
But let this not blind you to what virtue there is; many persons strive for high ideals;
and everywhere life is full of heroism.
Especially, do not feign affection.
Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.
Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe, no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive Him to be,
and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy.
“Desiderata” defined means things wanted or needed. A partial version of the poem hangs on the wall of the place where I will be staying for a while and while the piece is well-known, and indeed I have seen it before, the painted version here caught my eye and moved me. For some reason, however, I suspected that this particular version was a quotation only in part, so I looked up the entire poem. What I found struck me to tears.
Well, let me explain.
There are important lines that are missing in the poem on the wall here (important to me):
“You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.”
Also this stanza is followed by the critical word, “Therefore…be at peace with God…” whereas on the wall, the “therefore” has been taken out. But what a difference it makes to keep it in.
The important thing to me in reading the poem in its entirety is that I do not feel I have a right to be here, do not feel I am in any sense “a child of the universe.” I feel instead that I have ruined the universe, and that if I had not been born the world would have been better off by far. That is one critical thing.
The other salient point the poet makes, which made me weep, was his belief, stated well before anyone thought about global warming, but presumably he would have said the same thing even so, if he truly had the courage of his convictions that “no doubt the universe is unfolding as it should.”
TO the contrary, it feels to me completely tragic that the world should be ending in our geologic time, that we should be living in the end days, not something that was meant to be or unfolding as it should. ( I say “end times” without any religious intention to those words, only the sense that we have brought about the end of the living world upon ourselves by over-consumption and massively pig-headed over-population.) Of course, the “universe” is much bigger than humanity or even generally speaking the living blue planet called earth, but as a human living on it I have no other way to feel or see but from my puny human perspective. To lose Life on earth, all or most of it at any rate, to global warming feels utterly devastating. Who or what gave humans the right to destroy what might have been the tiniest fraction of a chance at existence, life itself, to throw it all away through the over-consumption of fossil fuel (in the brief span of 2 centuries) and making too many babies, and eating too many cows?
It sickens me that I am so much at fault, that I ought not to have existed at all, that much of this could have been avoided by my never having been born. But it also sickens me that as a species, humans have collectively, since my birth, ignored all the consequences of our “eating the earth” and now we have no earth for our children’s children to inherit…
Vis a vis another line in the poem, I cannot “be gentle” with myself. I do not deserve gentleness! That way disaster lies!
“With all its sham, drudgery and broken dreams, it is still a beautiful world.” Maybe… But the world is fast losing its beauty and sometimes i think it is only beautiful to those wealthy enough to be able to willfully blind themselves to all the ugliness and injustice around them: blinding themselves to the dying oceans and all the starving homeless people…to name just two out of many.
Nevertheless, the poem is still a miracle of inspiration and remains so after nearly a century. Though not really new to me, it newly struck a chord, though I am sure that people in the know would call it an “old chestnut” of a poem, nearly hackneyed and familiar as that other O.C., “Invictus”by William Ernest Henley, though I suggest Desiderata has always been far better written than Henley’s “chest-beater” of a poem (for all that it is a favorite of many thousands..).
Yes I actually managed to paint this picture — in gouache, not oils, true, but I did it, I picked up paints and brushes and from start to finish made a complete painting. This is a big step for me. True, I did the running shoes picture a bit earlier but that was really just a sketch. I have been drawing for so long, and so scared of painting that it feels really BIG that I did this, good or bad a picture though it might be. Sooooo, what’ja think? (By the way, it is a self-portrait – not flattering but hey…)
I THOUGHT THIS WAS INCREDIBLY WELL WRITTEN AND IMPORTANT INFORMATION. SEE CREDITS AT THE BOTTOM. Posted on January 12, 2014 by annecwoodlen THINGS YOUR DOCTOR SHOULD TELL YOU ABOUT ANTIDEPRESSANTS September 12, 2012 By Paul W. Andrews, Lyndsey Gott & J. Anderson Thomson, Jr. Antidepressant medication is the most commonly prescribed treatment for people with depression. They are also commonly prescribed for other conditions, including bipolar depression, post-traumatic stress disorder, obsessive-compulsive disorder, chronic pain syndromes, substance abuse and anxiety and eating disorders. According to a 2011 report released by the US Centers for Disease Control and Prevention, about one out of every ten people (11%) over the age of 12 in the US is on antidepressant medications. Between 2005 and 2008, antidepressants were the third most common type of prescription drug taken by people of all ages, and they were the most frequently used medication by people between the ages of 18 and 44. In other words, millions of people are prescribed antidepressants and are affected by them each year. The conventional wisdom is that antidepressant medications are effective and safe. However, the scientific literature shows that the conventional wisdom is flawed. While all prescription medications have side effects, antidepressant medications appear to do more harm than good as treatments for depression. We reviewed this evidence in a recent article published in the journal Frontiers in Psychology (freely available here). The widespread use of antidepressants is a serious public health problem, and it raises a number of ethical and legal issues for prescribers (physicians, nurse practitioners). Here, we summarize some of the most important points that prescribers should ethically tell their patients before they prescribe antidepressant medications. We also discuss the ways that prescribers could be held legally liable for prescribing antidepressants. Finally, we implore practitioners to update the informed consent procedure for antidepressant medication to reflect current research and exercise greater caution in the prescription of antidepressants.
How antidepressant medication works
Most antidepressants are designed to alter mechanisms regulating serotonin, an evolutionarily ancient biochemical found throughout the brain and the rest of the body. In the brain, serotonin acts as a neurotransmitter—a chemical that controls the firing of neurons (brain cells that regulate how we think, feel, and behave). However, serotonin evolved to regulate many other important processes, including neuronal growth and death, digestion, muscle movement, development, blood clotting, and reproductive function. Antidepressants are most commonly taken orally in pill form. After they enter the bloodstream, they travel throughout the body. Most antidepressants, such as the selective serotonin reuptake inhibitors (SSRIs), are intended to bind to a molecule in the brain called the serotonin transporter that regulates levels of serotonin. When they bind to the transporter, they prevent neurons from reabsorbing serotonin, which causes a buildup of serotonin outside of neurons. In other words, antidepressants alter the balance of serotonin in the brain, increasing the concentration outside of neurons. With long-term antidepressant use, the brain pushes back against these drugs and eventually restores the balance of serotonin outside of the neuron with a number of compensatory changes. It is important to realize that the serotonin transporter is not only found in the brain—it is also found at all the major sites in the body where serotonin is produced and transported, including the gut and blood cells called platelets. Since antidepressants travel throughout the body and bind to the serotonin transporter wherever it is found, they can interfere with the important, diverse processes regulated by serotonin throughout the body. While physicians and their patients are typically only interested in the effects of antidepressants on mood, the harmful effects on other processes in the body (digestion, sexual function, abnormal bleeding, etc.) are perfectly expectable when you consider how these drugs work.
Antidepressants are only moderately effective during treatment and relapse is common Since the brain pushes back against the effects of antidepressants, the ability of these drugs to reduce depressive symptoms is limited (see our article for a review). While there is some debate over precisely how much antidepressants reduce depressive symptoms in the first six to eight weeks of treatment, the consistent finding is that the effect is quite modest.
Many people who have suffered from depression report a substantial symptom-reducing benefit while taking antidepressants. The problem is that symptoms are also substantially reduced when people are given a placebo—a sugar pill that lacks the chemical properties of antidepressant medications. In fact, most of the improvement that takes place during antidepressant treatment (approximately 80%) also takes place with a placebo. Of course, antidepressants are slightly more effective than placebo in reducing symptoms, but this difference is relatively small, which is what we mean when we say that antidepressants have a “modest” ability to reduce depressive symptoms. The pushback of the brain increases over months of antidepressant treatment, and depressive symptoms commonly return (frequently resulting in full blown relapse). Often this compels practitioners to increase the dose or switch the patient to a more powerful drug. Prescribers fail to appreciate that the return of symptoms often occurs because the brain is pushing back against the effect of antidepressants. 3. The risk of relapse is increased after antidepressant medication has been discontinued Another effect of the brain pushing back against antidepressants is that the pushback can cause a relapse when you stop taking the drug. This pushback effect is analogous to the action of a spring. Imagine a spring with one end attached to a wall. An antidepressant suppresses the symptoms of depression in a way that is similar to compressing the spring with your hand. When you stop taking the drug (like taking your hand off the spring from its compressed position), there is a surge in the symptoms of depression (like the overshoot of the spring before it returns to its resting position). The three month risk of relapse for people who took a placebo is about 21%. But the three month risk of relapse after you stop taking an SSRI is 43%—twice the risk. For stronger antidepressants, the three month risk is even higher.
Antidepressants have been found to cause neuronal damage and death in rodents, and they can cause involuntary, repetitive movements in humans.
Antidepressants can kill neurons (see our article for a review). Many medical practitioners will be surprised by this fact because it is widely believed in the medical community that antidepressants promote the growth of new neurons. However, this belief is based on flawed evidence—a point that we address in detail in our article. One way antidepressants could kill neurons is by causing structural damage of the sort often found in Parkinson’s disease. This neurological damage might explain why some people taking antidepressant medication can develop Parkinsonian symptoms and tardive dyskinesia, which is characterized by involuntary and repetitive body movements. Many prescribers mistakenly think these syndromes only occur in patients taking antipsychotic medications.
Antidepressants may increase the risks of breast cancer, but may protect against brain cancers .
Recent research indicates that antidepressants may increase the risk of cancer outside of the brain, such as breast cancer. However, the neuron-killing properties of antidepressants may make them potentially useful as treatments for brain cancers, and current research is testing this possibility.
Antidepressants may cause cognitive decline.
Since neurons are required for proper brain functioning, the neuron-killing effects of antidepressants can be expected to have negative effects on cognition. In rodents, experiments have found that prolonged antidepressant use impairs the ability to learn a variety of tasks. Similar problems may exist in humans. Numerous studies have found that antidepressants impair driving performance, and they may increase the risk of car accidents. Recent research on older women also indicates that prolonged antidepressant use is associated with a 70% increase in the risk of mild cognitive impairment and an increase in the risk of probable dementia. 7.Antidepressants are associated with impaired gastrointestinal functioning The action of antidepressants results in elevated levels of serotonin in the intestinal lining, which is associated with irritable bowel syndrome. Indeed, antidepressants have been found to cause the same symptoms as irritable bowel syndrome—pain, diarrhea, constipation, indigestion, bloating and headache. In a recent study, 14-23% of people taking antidepressants suffered these side effects. 8. Antidepressants cause sexual dysfunction and have adverse effects on sperm quality. Depression commonly causes problems in sexual functioning. However, many antidepressants make the problem worse, impairing sexual desire, arousal, and orgasm. The most widely studied and commonly prescribed antidepressants—Celexa, Effexor, Paxil, Prozac, and Zoloft—have been found to increase the risk of sexual dysfunction by six times or more. Evidence from case studies suggests that antidepressants may also interfere with attachment and romantic love. Some antidepressants have been found to negatively impact sperm structure, volume, and mobility. 9. Antidepressant use is associated with developmental problems Antidepressant medication is frequently prescribed to pregnant and lactating mothers. Since SSRIs can pass through the placental barrier and maternal milk, they can affect fetal and neonatal development. Generally, if SSRIs are taken during pregnancy, there is an increased risk of preterm delivery and low birth weight. Exposure during the first trimester can increase the risk of congenital defects and developing an autism spectrum disorder, such as Asperger’s Syndrome. Third trimester SSRI exposure is associated with an increased risk of persistent pulmonary hypertension in the newborn (10% mortality rate) and medication withdrawal symptoms such as crying, irritability, and convulsions. Prenatal exposure to SSRIs is also associated with an increased risk of respiratory distress, which is the leading cause of death of premature infants. 11\\10. Antidepressant use is associated with an increased risk of abnormal bleeding and stroke Serotonin is crucial to platelet function and promotes blood clotting, which is important when one has a bleeding injury. Patients taking SSRIs and other antidepressants are more likely to have abnormal bleeding problems (for a review see our article). They are more likely to have a hemorrhagic stroke (caused by a ruptured blood vessel in the brain) and be hospitalized for an upper gastrointestinal bleed. The bleeding risks are likely to increase when SSRIs are taken with other medications that reduce clotting, such as aspirin, ibuprofen, or Coumadin . 11. Antidepressants are associated with an increased risk of death in older people. Depression itself is associated with an increased risk of death in older people—primarily due to cardiovascular problems. However, antidepressants make the problem worse. Five recent studies have shown that antidepressant use is associated with an increased risk of death in older people (50 years and older), over and above the risk associated with depression. Four of the studies were published in reputable medical journals—The British Journal of Psychiatry, Archives of Internal Medicine, Plos One, and the British Medical Journal—by different research groups. The fifth study was presented this year at the American Thoracic Society conference in San Francisco. In these studies, the estimated risk of death was substantial. For instance, in the Women’s Health Initiative study, antidepressant drugs were estimated to cause about five deaths out of a 1000 people over a year’s time. This is the same study that previously identified the dangers of hormonal replacement therapy for postmenopausal women. In the study published in the British Medical Journal, antidepressants were estimated to cause 10 to 44 deaths out of a 1000 people over a year, depending on the type of antidepressant. In comparison, the painkiller Vioxx was taken off the market in the face of evidence that it caused 7 cardiac events out of 1000 people over a year. Since cardiac events are not necessarily fatal, the number of deaths estimated to be caused by antidepressants is arguably of much greater concern. An important caveat is that these studies were not placebo-controlled experiments in which depressed participants were randomly assigned to placebo or antidepressant treatment. For this reason, one potential problem is that perhaps the people who were taking antidepressants were more likely to die because they had more severe depression. However, the paper published in the British Medical Journal was able to rule out that possibility because they controlled for the pre-medication level of depressive symptoms. In other words, even among people who had similar levels of depression without medication, the subsequent use of antidepressant medications was associated with a higher risk of death. These studies were limited to older men and women. But many people start taking antidepressants in adolescence or young adulthood. Moreover, since the risk of a relapse is often increased when one attempts to go off an antidepressant (see point 3 above), people may remain on medication for years or decades. Unfortunately, we have no idea how the cumulative impact of taking antidepressants for such a long time affects the expected lifespan. In principle, long-term antidepressant use could shave off years of life. It is commonly argued that antidepressants are needed to prevent depressed patients from committing suicide. Yet there is a well-known controversy over whether antidepressants promote suicidal behavior. Consequently, it is not possible to reach any firm conclusions about how antidepressants affect the risk of suicidal behavior. However, most deaths attributed to antidepressants are not suicides. In other words, antidepressants appear to increase the risk of death regardless of their effects on suicidal behavior. We suggest that antidepressants increase the risk of death by degrading the overall functioning of the body. This is suggested by the fact that antidepressants have adverse effects on every major process in the body regulated by serotonin. 12. Antidepressants have many negative effects on older people Most of the research on the adverse health effects of antidepressants has been conducted on older patients. Consequently, our conclusions are strongest for this age group. In addition to cognitive decline, stroke and death, antidepressant use in older people is associated with an increased risk of falling and bone fracture. Older people taking SSRIs are also at an increased risk of developing hyponatremia (low sodium in the blood plasma). This condition is characterized by nausea, headache, lethargy, muscle cramps and disorientation. In severe cases, hyponatremia can cause seizures, coma, respiratory arrest and death. The fact that most research has been conducted on older people does not mean that antidepressants do not have harmful effects on the young. As previously discussed, antidepressants can have harmful effects on development. Moreover, many people start taking these drugs when they are young and remain on them for years or decades. In principle, the negative effects of these drugs could be substantial over such long periods of time. Altogether, the evidence leads us to conclude that antidepressants generally do more harm than good as treatments for depression. On the benefit side, the drugs have a limited ability to reduce symptoms. On the cost side, there is a significant and unappreciated list of negative health effects because these drugs affect all the processes regulated by serotonin throughout the body. While the negative effects are unintended by the physician and the patient, they are perfectly expectable once you understand how these drugs work. Taken together, the evidence suggests that these drugs degrade the overall functioning of the body. It is difficult to argue that a drug that increases the risk of death is generally helping people. There may be conditions other than depression where antidepressants are generally beneficial (e.g., as treatments for brain tumors and facilitating recovery after a stroke), but further research in these areas is needed (see our article). Ethical and Legal Issues Physicians and other medical practitioners have an ethical obligation to avoid causing greater harm to their patients. The Latin phrase primum non nocere (“first, do no harm”) that all medical students are taught means that it may be better to do nothing than to risk causing a greater harm to a patient. Although all prescription medications have adverse side effects that can cause harm, practitioners have an ethical obligation to not prescribe medications that do more harm than good. The evidence we have reviewed suggests practitioners should exercise much greater caution in the prescription of antidepressants and to reconsider their use as a first line of treatment for depression. Additionally, we suggest that physicians and other medical practitioners should consider their potential legal liability. Legal liability for prescribing antidepressants Medical practitioners can be sued for prescribing antidepressant medications if doing so violates their state’s standard of care laws. In most states, the standard of care is what a “reasonably prudent” practitioner in the same or similar field would do. The standard of practice is not defined by what the majority of physicians do because it is possible for an entire field to be negligent. Since studies on the health risks associated with antidepressant use (e.g., stroke, death) have been published in well-respected medical journals, medical practitioners could possibly be vulnerable to malpractice lawsuits. For instance, it seems likely that a reasonably prudent physician should be aware of the medical literature and avoid prescribing medications that could increase the risk of stroke and death. Prescribers can also be held liable for not discussing information about medical risks so that patients can give informed consent for medical treatments and procedures. Prescribers have a duty to discuss the benefits and risks of any recommended treatment. Consequently, medical practitioners should discuss with their patients that antidepressant medication is only modestly more effective than placebo and could increase the risk of neurological damage, attentional impairments, gastrointestinal problems, sexual difficulties, abnormal bleeding, cognitive impairment, dementia, stroke, death, and the risk of relapse after discontinuation. Antidepressants must cause harm to create liability A medical malpractice lawsuit can only succeed if the antidepressant caused harm to the patient. It is important to realize that the antidepressant does not need to be the only cause of the harm—it only needs to contribute to or exacerbate the harm. As we have argued, antidepressants play a causal role in many adverse health outcomes because they disrupt serotonin, which regulates so many important processes throughout the body. This may make it particularly difficult for a medical practitioner to defend against a medical malpractice suit from a patient who experiences any of a number of adverse health effects while taking an antidepressant. For instance, if a patient has a stroke while taking an antidepressant, the evidence that antidepressants increase the risk of stroke suggests that the antidepressant may have contributed to the patient’s stroke, even if it was not the only cause. Conclusion The evidence now indicates that antidepressants are less effective and more toxic than commonly believed. From ethical, health, and legal perspectives, it seems prudent for individual practitioners and professional medical organizations to revise informed consent guidelines and reconsider the status of antidepressants in standards of care for many diagnoses and as the front line treatment for depression. With older people, for instance, the current data suggest informed consent must include a discussion of the increased risk of hemorrhagic stroke and even early death. We suspect that if prescribers realized they were placing themselves at legal risk for failing to discuss the adverse health effects of antidepressants with their patients, not only would they be more likely to discuss such information, they would be less likely to recommend these drugs in the first place. Paul W. Andrews is an assistant professor in the Department of Psychology, Neuroscience & Behaviour at McMaster University in Canada. He has a PhD in Biology from the University of New Mexico and a law degree from the University of Illinois at Urbana-Champaign. His work on the evolution of depression with J. Anderson Thomson, Jr. has been featured in the New York Times Sunday Magazine and Scientific American Mind. Taken with respect and gratitude. directly from ANNECWOODLEN’s Blog BEHIND THE LOCKED DOORS OF INPATIENTS PSYCHIATRY. http://behindthelockeddoors.wordpress.com/2014/01/12/you-and-your-antidepressant-2/
No music or sound, sorry. Best viewed in small screen as the conversion to Quick-time made the files smaller and hence less crisp when seen on a large screen…I’m sorry but this doesn’t seem to be viewable on an ipad..Dunno about android devices. At least I notice that the controls are unavailable on my ipad at any rate…Will try to find another format that will work and re do it…SO SORRY!
This is a photo of my large drawing of a place in Tuscany named Palazzo Podere or as translated, “Castle Farm.” I only uploaded a small file…Sorry… the details are fuzzy but them’s the breaks.
Things have been up and down, but the last two days were better than before. Largely because of an art therapy session that I found amazingly cathartic. It involved my being asked to make a “three dimensional sculpture” from a sheet of paper, a pair of scissors and some clear tape. I had no idea what to make, nor what would come from it. In fact, I dithered for a while, stymied, rolling a bit of the blue construction paper into a little tube and taping it, desultorily, waiting for inspiration. Nothing. Then suddenly it slammed me. YES! I was making, YES! a bullet for, YES, my very own Glock 9 semi-automatic handgun.
I proceeded to craft a crude gun with a bullet or two and a clip of ammo until I was finally satisfied that I had what I wanted. When I was through, Margaret, the therapist, handed me a sheet of paper on which she had written, “I am” five times. She asked me to look at my paper gun and ammo clip, at any angle I wanted to, and complete the five sentences as I wished. Well, I won’t tell you in great detail, because my answers were were rather gross and violent, what I wrote, except to assure you that when I was through, and it took a while, she asked me, How do you feel?
I had been somewhat tearful as we talked and earlier in the week had been extremely upset and angry, but I now looked at Margaret and with a little surprised smile said, well, you know, I feel…better!
And I did. In fact, when I saw Dr Angela the next day, she noticed the difference immediately. Whereas before I had been nearly screaming, and not looking at her, now I could smile and make eye contact for the first time in months.
Progress on the medication front: Am off all Abilify. Now am dropping the Geodon, slowly. Down 40mg from 160mg. Will be dropping 40mg every 2 weeks. I think. Unless that feels too fast. If I run into trouble , I will slow it down, but Geodon never seemed to do much of anything for me…Maybe I am wrong, it could be I’m unaware of what it does. But in my experience it did little positive for me, and so it should not be too hard to get off it. I just need to be careful not to stop anything too quickly, no matter how eager I am to be off all meds.
I still take some small amounts of Ritalin and Xyrem for narcolepsy, though hugely reduced now that I am not so sedated on antipsychotics and antidepressants and only take 200mg of Topamax. I dunno about that last. I may try to stop it too. But it depends on the olfactory hallucinations and whether or not my migraines are under control.
IN the meantime, I have been busy hiring people to stay with me 24/7 come January, in the event of a crisis, which I have to assume will happen since it always has…So long as I know people will come in and prevent a hospitalization I feel okay about it. Otherwise I would be panicking, thinking that I would ever have to go through such torture. NEVER would I let them do what they did to me at Yale or the IOL again. I will kill myself before they get their hands on me another time. But it won’t happen, because i have aides/nurses/various people hired to help me out now in my own apartment, and they will take care of things so no hospital will be waiting in the wings to torture me. The only thing I need to be sure of is that who ever it is that is going to be with me, they MUST be on board with the NO MEDS thing. NO ONE is going to force meds on me in my own apartment — I don’t care who they are. If they don’t agree with that, if they have a pro-medication agenda, then they are not going to be part of my plan…
I also finished a good drawing of a house in Tuscany, Italy and a painting of a child I started a long time ago, which I will post here. (The house drawing is at the framers, where it is being matted because it is too large for a precut mat. I am sorry that I have posted the painting with little faked watermarks on it, but I do not like the fact that people can simply print out my pictures otherwise and not have to pay me for the prints or the paintings…)
As for the rest, I am coping, that is all I can say. I try to “fake it till I will be able to make it” — meaning that I do not tell people how difficult it is, most of the time, because that only makes it harder. If I can try to ignore as much as possible what is going on that is all for the best. And when I cannot, I stay by myself and try to deal with it. Or i see someone, my therapist or a person I have hired to stay with me. Or I simply tough it out as best I can. Things could be worse. After all, I am not in the hospital and I have to keep telling myself that! 8)
In the meantime, I don’t have a lot to say. Doing art takes all my time and energy, and the rest is spent simply dealing with things and coping. Forgive me. I will be back. I just wanted to post this to allay anyone’s fear that I was back in the bin.
And now for something really different. Cartoons that tell you about my life these days.
Hope you can make out the text okay…It is a little difficult,. granted. But I tried to photograph the pages clearly as possible.
Gargantua is the name of a book, and a character in the book. In it someone says, Appetite comes with eating. It helps me to think about that when I find i cannot find a way to put food enough in my mouth to keep going…I need to eat on schedule if only to keep my strength up.
Meanwhile I am not in a good state at all. Bill wanted to talk about an email I sent him saying as much as the above, but I am much too shaky to be able to deal with it. I just cannot use him to talk TO alone…I have friends with whom we have shared equally all along, and so I do not feel a burden now when I am in trouble. But Bill has ceased talking about himself a long while ago, and I am to blame for letting him withdraw. I felt slighted but felt that perhaps he was reserved and saved his intimate moments for his girlfriend…But no more. I cannot be using HIM as a pair of ears and feel that he shares nothing back. THen I feel guilty and a selfish user! That isn’t fair to me let alone to him…It won’t happen. It won’t be. Not any longer. Hear that, Bill? YOU are an important part of our friendship, as a person,. and if you don’t want to be a person, I do not want a NON-person as a friend.
Enough. I feel like I am going to die. And now even the doc doesn’t want to suggest that I take even a sliver of Abilify now that I am off it…So I am really up a creek..Up a creek because I dunno how long I can tolerate this. I smell rot rising inside me, smell it for real., Like my body is rotting from within…Where is it coming from? I brush my teeth several times a day (unusual for me!) but still the rot smell persists!
I am not a praying person, but I know many of you are. I am in such deep shit. I will be going to art therapy today, perhaps that will bring some relief. in the meantime, if you feel prayer can help, pray for me…?
Thank you , all of you, for hanging in with me. I am NOT a quitter, I am not a quitter!
To explain the picture/letters above, I was practicing some lettering, briefly, and did not know what I was writing until later…which makes what I wrote all the more interesting a message from my subconscious. Clearly I agree with almost everyone else I have ever heard from: Haldol is the drug from hell! About the rest of it, well, Psychiatrie macht frie derives from the sign that was posted above Auschwitz and other concentration camps during WWII, Arbeit macht frei, or Work makes (you) free. So this transposition is meant to suggest (sardonically) that psychiatry will free you in just the same way… NOT!
What particularly sickens me personally is the damage the fiction called the Dopamine Hypothesis — how an excess of dopamine causes schizophrenia — may have done to the millions of people like me who have taken antipsychotic drugs for decades, unknowingly buying into the medical model and this notion that we somehow had too much dopamine coursing around in our brains.
Life is ALL about dopamine, LIFE has always been about dopamine. Here are some of the human functions to which dopamine is essential
behavior and cognition
inhibition of prolactin production
Why on earth would anyone deprive another human being of the one neurotransmitter that allows us to feel good about things? It would seem to be a diabolical plot, if anyone actually did such a thing, right? And yet, for decades right on through today, that is what doctors want us to do, block the transmission of dopamine to the brains of those of us diagnosed with schizophrenia. They know, of course, that it is impossible, that the brain up-regulates the flow of dopamine in such a way as to thwart at least in part the antipsychotic receptor blockade. Homeostasis will be re-established eventually, even if at abnormal levels due to the drug’s presence.*
No one can live without dopamine, after all. But to understand the necessity of dopamine, and that they have known for years that an imbalance of dopamine metabolism is NOT implicated in schizophrenia, and finally to “grok” that they have nonetheless perpetuated the lie that is the “dopamine hypothesis” just boggles the mind with its enormity. How can we believe anything they tell us about negative symptoms, now, when as one website informs us:
“Low D2 receptor-binding is found in people with social anxiety or social phobia. Some features of negative schizophrenia (social withdrawal, apathy, anhedonia) are thought to be related to a low dopaminergic state in certain areas of the brain.”
The atypical AP drugs induce a D2 receptor blockade as a matter of course. After all, if you don’t feel any reward-sense from your life and living, your normal dopamine being in an antipsychotic blockade, why would you want to change your clothes, or take care of yourself, much less bother to go to work or even think? But we have been led to believe that such negative symptoms are part of schizophrenia and NOT part of the drug treatments for it! No one told us they were taking away all our incentive to do anything, to even move or think. They told us they were helping us, not hurting us, not destroying our lives!
Even more diabolical, to my way of thinking is the idea that some doctors actually add an atypical antipsychotic onto the treatment of mere depression. Can you imagine how you would feel if you were taking an SSRI (which is ineffective) and which already deprived you of sexual satisfaction or any sexual feelings at all, and then you are given an adjunctive antipsychotic that subsequently deprives you of dopamine? It might add twenty to forty pounds or even more in no time, up your cholesterol and blood sugar, and then deprive you of any feelings of reward or pleasure…Ah but it will boost your antidepressant’s antidepressant activity? J’en doute fortement… I doubt it highly!
What do the doctors care? Either they bought into the drug company’s literature and haven’t read anything independently since med school…or they are on the take themselves from Big Pharma in some fashion and don’t give a damn.
We need to be on the look out for ourselves, because god knows the doctors are not on our sides, most of them. They cannot be. This is their bread and butter, folks esp the psychiatrists and if they cannot prescribe pills, what will they do? They won’t be “real doctors” any more and their prestige will plummet yet again…OH NO! The fact is, they need to learn to do psychotherapy again, or get out of medicine because they cannot prescribe pills that do not work, and there are none that do! None that do reliably and well or better than placebo. In fact, except for the occasional use of a benzodiazepine, and the judicious use of cognitive enhancers for the proper people, and meds for sleep, I am convinced that precious few drugs in the psychoactive armamentarium are worthy of anything but the dustbin.
I think most are ONLY placebos, if they do anything at all. Frankly. And I say this despite having once written testimonials in praise of Zyprexa and other drugs…I dunno, I dunno. How could Zyprexa be anything except a placebo? It is a dirty drug that hits nearly every known neurotransmitter of importance…And yet we do not know how it does what it does…and it has horrendous side effects. That much we know. Since we do not have any reason to think it is the action on dopamine or serotonin that is the “antipsychotic” activity, in essence we cannot say why or if it does anything at all. ALL the AAPs drugs work on the neurotransmitters in a more or less dirty fashion. In fact the OLDER drugs were less dirty, being more specific to just dopamine!
I reiterate, there is no “chemical imbalance” in schizophrenia, or bipolar “illness’ or in depression. No one has ever proven or shown any such animal ever. Only after patients have taken a drug to “treat” such conditions is there ever an “imbalance” and this imbalance is a direct result of having taken the drug. PLEASE remember this and question your doctors next time they warn you that if you stop your meds your “chemical imbalance” will reassert itself and make you sick again. Ask, “What chemical imbalance and where did it come from? What chemicals and what is the normal level I should have?” I know I know, the doctor will say, dopamine, if you “have” schizophrenia, or “serotonin” if you “have” depression. Lord knows what she will claim if you “have” bipolar tendencies of one sort or another, as so many millions upon millions of Americans these days have been told they now do…But it isn’t true. Not even if they claim it is. There has never been any proof of altered neurotransmitter levels and in fact it is the opposite: drug-naive people with schizophrenia and depression, that is to say, those who have never taken any medication, have been shown to have the exact same dopamine and serotonin levels as anyone else!
As for those who suffer from the condition called “bipolar” — You know, it used to be a very rare condition, manic-depression. Now, you see “bipolars” coming out of the woodwork everywhere. One used to have to have been crazy-manic at least once, to the extent of having been hospitalized to qualify for the diagnosis, and this made sense as it was restrictive and not a broad umbrella. Given that the illness was considered a very serious one, no one wanted to bring too many within the definition. Now, with so many drugs used to “treat” (ha ha ha) the condition, and with the help of DSM IV and 5 to bring patients to the drug companies’ financial assistance, you need only complain of a garden variety “depression” to be counted as bipolar…
But remember: 1) the drug companies treating bipolar etc only want to make money, 2) the drugs treat something — a neurotransmitter imbalance that doesn’t exist 3) bipolarity is a fiction that keeps lengthening, like Pinocchio’s nose, with every newly expanded definition…
Think about malaria, a real illness. It doesn’t make more people ill just because it gets redefined. Malaria is caused by a protozoan (injected through the bite of a mosquito), and it sickens people who are vulnerable to the ravages of that organism inside the body…in the same way each time. You don’t “get” malaria more because a financially- interconnected organization of doctors/drug companies decides to change the definition of what constitutes malaria. No, you get malaria the way people always gotten malaria, largely through not using mosquito nets and other preventive measures…i.e. via a mosquito bite.
Ay, this is NUTS! It should not be so fricking easy to fit everyone into a diagnostic category of mental illness. Emotions are NOT illnesses by definition, they are normal and necessary, even excessive emotional reactions are quite normal; they happen every day to everyday normal people. Some cultures define themselves by their emotionality! It behooves us to remember this and not pathologize it.
So too, think of this: depression frequently is just sadness, folks. We used to know the truth of the saying, “This too will pass…” There are problems in living that are just problems in living, and I think that some people for whatever reason are simply miserable, without having a mental illness. They would not do better being labeled with an illness or being treated for one. In fact, I have seen people in states of abject misery do a great deal worse under the burden of a label…
I have had it. I do not trust a drug company or a prescription at all, none of them. The foxes are in charge of the chickens and they are up to no good, no good at all. So this weekend I am OFF all Abilify. HURRAY! After that I start cutting out the Geodon…(I have already halved the Ritalin simultaneously with the decrease of Abilify. I had to, I simply don’t need the Ritalin as much, as I am not as sleepy. After Geodon, there is only the Topamax, which I take for seizures and migraines.. Have to decide about that one. I want to be off it, I really do. But can i?**
*Note that although some of these conclusions are my own, I drew most of the research I have based them on from my readings in Robert Whitaker’s fine books MAD IN AMERICA and ANATOMY OF AN EPIDEMIC. I highly recommend reading both of them, which can be accessed through the link I provide at the top of the page in my blogroll. The link goes directly to ANATOMY but MAD can be found easily through there. Good reading! And please do let me know what you think at any time. (Adding this note at a later time, very much the same information can be found in Dr Joanne Moncrieff’s books — a British psychiatrist who came to similar conclusions as Whitaker. Her book on antipsyhcotics is THE BITTEREST PILLS, and her book on psychtherapeutic drugs in general is THE MYTH OF THE CHEMICAL CURE.
**writing in Dec 2017 i have never been able to get off the Geodon or the Abilify, nor the other drugs, though i have cut the Geodon in half somewhat successfully. (I am unable to speak at present, but i do not believe the two are linked, as i dropped the Geodon/ziprasidone dose more than a month ago and the muteness started less than a week ago). That said, i still do not believe they help me. I just maintain that once you have been on these drugs for literally decades as i have been, more or less by force, then your brain changes in response and ends up “imbalanced” and in that sense alone does need the drugs.
Mosaic: a word that means from the muses, from Moses and a work of art created from broken fragments of pottery, stone or glass.
Even the first time, surrender was not hard,
though the grownups and mothers
with their drinks and swizzle sticks
undoubtedly thought it so when you volunteered
your only present that 10th Christmas
to a younger child who wouldn’t understand
being giftless at the tail end of a line to Santa,
nor your inherent sin in being born.
Such generosity should have stayed
between your concept-of-God and you,
but grownupadmiration (you could not hope
to make your act unpublic) sullied the soap
of any generosity’s power to cleanse you.
Other atonements followed, only one
almost perfect, being perfectly anonymous
spoiled by an accomplice’s later telling.
Perfection? You never made that grade,
your terrible love for God demanding all life
from your life. No one told you, “Live a lot,”
not in words that made it matter, though
they doubtless counseled, “Live a little.”
You were always in school to be perfect,
never knowing that life is a classroom
where one learns to love flaws
by throwing bad pots, to shatter
them with careful hammer,
assembling beauty from broken things.
I do not believe I posted this poem here before. I may have but I doubt it as I was going to publish it in a print journal. Instead, I never sent it out. So instead I choose to “sacrifice” it here. (meaning: If i publish it online here I cannot do so in a print journal…so this is for you, folks!)
I am going to tell you about the child I was when I was very small, as small as I can remember. The first thing I remember about myself as a self, was…well, what do I remember? This is hard. For one thing, while I am down to only 5mg of Abilify, I still take 160mg of Geodon, but more important I still take 200mg of Topamax, an anticonvulsant that has known adverse effects on memory and cognition. Whether it actually interferes with what I can recall from childhood or not, I could not say…Perhaps ECT did that, 16 plus 5 sessions of ECT could have done a number on my brain, especially as I had active neurological Lyme disease at the time. The Lyme-literate neurologist advised strongly against ECT, but the hospital psychiatrist forced me, at least through the last 8, after I refused to go back, by getting a court order and drugging me on so much Thorazine I had no will.
Ah, but “They,” the faceless They of Authority, They say that ECT affects only short-term memory. Well, then, I guess just being 60 years old and having gone through trauma after trauma in the present decade alone surely could have wiped out memories from a half century ago and before. Whatever is the case, I must now scour my brain to recall what I thought I could recall easily.
Marjorie M, an old friend of my father’s, related a significant story recently — about me at age 6. Given our bedroom when she stayed with our family to recuperate from surgery, while my twin sister and I camped out somewhere else in the house, Marjorie was relaxing in my twin bed, alone, when she was surprised by my little face in the doorway. “Hi, Mrs M,” she tells me I said. “Why, hello, Pammy. How are you?” I looked at her with concern. “Are you all right, Mrs M? Are you lonely? Do you need anything?” (or something to that effect..) I am astonished that even at age 6 I knew I needed to “do this,” although I think that my mother, who disliked Marjorie intensely, was probably ignoring her and I suspect knew it even then. But Marjorie says she fell in love with me at that moment. She certainly never forgot the incident. Bless her heart…
I forgot it, likely I never knew or understood its impact. Given that I was six, I had already made the decision the year before, when Martha was born and I was five years old, that since I would never have the older sister of my own dreams, I would instead have to be the older sister I dreamed about for Martha. I made myself the promise to Martha, the day she was brought home from the hospital, that I would do everything in my power to be in Martha’s older sister the OS I would have wanted.
In all our childhood photos, until the year I turned 14 and stopped permitting photos to be taken, you see two things: I am almost always featured next to Martha, with my arms around her or somehow touching her, protective of her, and my twin sister is with the dog or otherwise occupied. Always. You might not be able to tell which twin is which from our facial features, but you can tell us apart from that. One of us is with Martha, and you know I am that twin for certain.
It is the greatest loss to me, the worst thing, the — I can only say this: I am not a quitter, but I was unable to complete that most important of assignments because of what happened to me in high school, whatever you want to call it. I either became ill, or troubled or had too many problems…whatever it was, I simply could not function well enough to do all that I promised myself (and Martha) I would do for her. I could not BE the person I needed to be, the functioning adequate teenager, in a good enough way to be a good enough older sister to her.
For instance, just take the older sister/younger sister Q and A that ought to have taken place but never did after I was 14. My own menstual periods took me by brutal surprise. In addition, I never did learn “the facts of life” (ie sex) as we called it in those days, not for real, not so I understood them, until after college. I vaguely knew the “birds and the bees” but not really, not so I understood the fundamental mechanics of sex at a time when most teens were experimenting with relationships for real. (Not me… I went to an all-girls high school and even though it was not necessarily true for the other students, for me, sex was never on my mind, I never understood the urge or the drive, not then and frankly not ever…) Given those facts, you can see that the OS/YS tête-a-têtes about sex and dating etc just were not going to happen. I didn’t know enough, one, and two, even if I had, I was unprepared to talk about anything so intimate with anyone.
As it turned out, though, Martha had plenty of friends and soon clearly found people to talk to when I could not. Thank heavens, because if the roles had been reversed, she could have taught me plenty! Only they could not be reversed, because I was the OS and she was the YS and things had to stay that way… I think to this day, though she doesn’t say it in so many words, she misses, if not resents, losing the OS, the me she once had…She misses surely the OS promise she knew I made to her from the outset.
Oh, Martha knows it wasn’t my fault. Life is life and shit happens. But she misses me, the Pam that never quite panned out because of everything that “happened” after I turned 14, 15, 16 and then it went on and on and on…She reminded me recently that even before I was taking any medication I told her that life was a minute by minute, hour by hour, day by day struggle just to survive…and I was only 24 or 26 or…This horrified her. To this day she can scarcely bare to recall my telling her. Or of seeing me catatonic in the State Hospital. She left crying and I think could not bear to visit again for years…
We create our reality, people tell me. Our thoughts are very powerful…If so, I created from a very young age, a very harsh reality, one where in cahoots with a punitive God, I had learned over the years I had to be selfless to the point of self-obliteration, as well as nearly mute. But not so mute as to be noticeable…because if you were noticed then you were not completely self-less. (I told you it was a harsh world…) I had to speak just enough so as to NOT be noticed, but never about me or my concerns. ONLY about others…and then listen to their problems ONLY. I had to be a pair of ears pinioned to the wall. Wear drab no-color colors, unnoticeable. Fade into the woodwork, but only in a way that was unremarkable…As soon as someone noticed that I was fading, it was evil! and I had to add just enough color to fade into the crowd anonymously yet again, self-lessly.
No wonder my handwriting almost disappeared into invisibility. (I would have willed my fingerprints away if I had been able to!) Can you imagine my mortification, and the self-mortification I had to practice when bank tellers noticed the minuscularity of my signature and made me sign checks a second time? They NOTICED my attempts to disappear, and in doing so, made me appear loud and big…which was bad. So the voices took it out on me, making demands that had to be answered and hidden in turn.
Why am I writing about these things? Because despite the pain it has caused me, I still believe in self-denial. I believe in self-lessly doing things for others, and in NOT being the center of our own universes ALL the time. I think a good bit of doing for and thinking about others in THEIR universes is good for the soul, so long as they do not abuse you. And I do not believe that others need to know everything good that we do. I do not think we need to broadcast every good deed on Facebook or to our friends so they know what good people we are! So what if it remains anonymous, or between God and you? Maybe even God doesn’t need to know it if you do something for someone else…and that someone else doesn’t need to know who did it either.
Live with the anonymity. You can do it. You can be self-less once in a while and not die. Your self is strong enough tolerate not telling the world everything you do for others…Trust me. You do not need kudos, confirmations or smiles for everything you do. You just need to know that someone else is better off because you did something or gave away something you could have used, but decided to give it to someone else instead. You sacrificed something. Not that you gave it away because you could not use it but because someone else needed it more than you did.
Try it, a little sacrificing especially in the United States is a good thing to learn. But make it real, don’t do it falsely. Giving up time or giving away something you don’t use or have any need for is no sacrifice. Sacrifice: from the Latin, sacer, “holy” plus facio, facere, “to make.” Something is only a sacrifice, something is only made holy, if it is a real loss and a real gift at the same time.
When Monica Cassani posted this video (see below) on her wonderful blog, BEYOND MEDS.com today, I was not sure I would watch it, mostly because I often do not have the patience to watch videos, no matter who recommends them. (Sorry about yesterday’s recommendation, an hourlong one no less, but it is vitally important to me and my topic…I still highly recommend it, if you cannot read Anatomy of an Epidemic…). Nevertheless, something about a video on treating trauma, perhaps the face of McElheran on Youtube, perhaps just my mood at the beginning of this day, impelled me to click on the little triangle that started it playing. I was pulled in almost at once. In fact, I was soon in tears, because McElheran may speak to us all, but most importantly she spoke to me…her words on trauma included me, personally, for once.
That she did so, moved me beyond words, because at that moment she validated my own manifold experiences of trauma, which were mostly NOT of potentially mortal events, even if I may have believed them to be so (when paranoid or psychotic). I will embed the video here, so you can watch it now, and come back to my blog post afterwards if you so choose. Or watch it whenever you like. It is — truly! — only 16 minutes long, and very compelling, so do not worry that it will take a lot of time.
Something about what she talks about reminds me that “Nothing human is alien to me…” We are all capable of everything, and anything, given the proper circumstances. Her compassion for human behavior is astonishing and moving beyond words.
I need to say this because no one who “knows me” thinks I am “capable” of things like calling people such vile names as those I called the aides and nurses regularly at YNHPH, or of stripping and defecating and smearing feces without even thinking or considering the consequences… But those are important words: “without thinking” and “without considering the consequences” because they indicate that I was behaving wildly impulsively, as indeed I was. Think about the situation: Six to eight people, some of them security guards (self-professed former police officers) had just violently and brutally assaulted me, thrown me onto a bed, held me down (causing physical pain to the point that I screamed in reaction) and pulled down my pants, giving me three intramuscular injections into the buttocks, then holding me down some more until they felt “safe” to let go…(One of them actually telling me they would press charges for my kicking her in the stomach while she was restraining my knees!)
Once i was freed, I made a dash to get out of the room, wanting to “do laps” around the “square” hallway that gave the Washington Square 2 unit its name. No deal. They physically prevented me from leaving the small single room, that had nothing in it but a hospital bed and tray table. I recoiled, enraged and manically in need of doing something, anything! Suddenly, I felt my bowels engage, roil, want “to go.” But the bathroom was down the hall…No matter, what the F—! Who gives a shit, in fact.
Without thinking a second thought about it, I simply pulled down my pants, squatted, and unloaded on the floor, to not so silent on-lookers astonishment and incredibility. Then I removed my clothing altogether. But another WTF moment seized me, then. The steaming pile of sh-t was there, and suddenly I “knew” what to do with it…and I did not give a sh-t that this meant using my hands or getting it all over me or anything. I just didn’t give a flying femtogram. I do not know why. I didn’t even smell anything. I just picked up handsful of the feces and smeared it across the walls. But not blindly and wildly, no, I was writing something, I remember now, I wrote something on the walls with it, though I do not know what any longer. And I do not think anyone took the time to read it. I do not believe anyone bothered to notice that I was not merely smearing but writing in shit...
The point is, I did this as a response to trauma, small as you might say it was. I felt traumatized. I felt brutalized. And I felt and was out of control as a result. This is not to say that my impulsive behavior served any purpose other than venting rage and sheer revenge at my abusers. It certainly won me no friends and no compassionate understanding from anyone. It could have, someone might have understood it for what it was, and seen that what they were doing to me was in fact brutality and traumatizing…They had after all diagnosed me with PTSD, so WTF did they think they were doing?
It doesn’t help, frankly, that “Dr Angela” believes that they were “on my side” and “doing their best” and “actually helping me” all along. I do not agree. I do not believe that. I think they were hidebound in their determination to break me, and if they could not see that they were perpetuating harm, they should have.
Okay, okay, okay Pam. Calm down. Calm down. Remember you are practicing forgiveness, not worrying the sore into an infected mess! 8)
This is hard. It is so difficult to forgive and let go of harm that no one admits to having done, one, and two, claims was actually for my own good. To help me!
Bull feathers! I still have exquisite backside piriformis muscle pain when I move in certain ways or even sit down on my right hip. And if I take off a T-shirt with the usual crossed arm movement, it causes agony in my deltoid muscles from the injections they gave me there too.
But forgive and move on, forgive and move on…I need to take a deep breath. Think about other things. Get ready to go out for coffee as I have made a date with an old friend of mine I haven’t seen since that debacle at the Institute of Living last winter. We always have great talks. It will be good to see her!
Yes, I will leave this on that note. The fact that I do not isolate myself, but that I have lots of friends and do things to keep myself busy and fulfilled and purposeful in life. Trauma and memories and flashbacks of trauma may still get me, and they get me in the gut a lot, but they haven’t got me completely over a barrel the way they might have. There was a time when I was more isolative and friendless but not any more. Not anymore.
I spent more than three weeks at Yale’s psychiatric hospital in August being tortured, if not by seclusion and mechanical restraints (my PAD restricted the use of those and at least at Yale they listened) then being held down by armed security guards (only their guns removed) and injected innumerable times with a multi-injection cocktail of drugs: Haldol 10mg, Ativan 2mg, and Benadryl 50mg, despite my objections that I have a paradoxical reaction to the last one. They said I could not refuse because I would have side effects to the Haldol without it. Understand this please: They deliberately injected me with a large enough dose of Haldol (without any basis to know I needed any more than the usual 5mg or even 2mg) as to knowingly cause side effects, side effects they knew in advance would be so distressing as to not allow me to refuse medication for them before they even happened!
What sort of dastardly drug is this that it hurts as much as it “helps”? Ah, yes, let me remind you, lest you have forgotten, that Haldol is the medication political dissidents in the 1970s were given in the Soviet Union to subdue them after they were diagnosed conveniently with “sluggish schizophrenia,” an illness “everyone” in the West “knew” didn’t exist except in the Soviet political playbook, designed solely for the dissidents. The American Congress, Democrats and Republicans alike objected then vehemently to Soviet treatment measures, calling Haldol injections the dissidents were given nothing less than “torture.” None of the members of congress ever mentioned the widespread use of Haldol in American mental hospitals, though, for that wasn’t torture, was it? “Those people” – American “schizophrenics” need Haldol, they were told by establishment psychiatry, “they aren’t like you or me and don’t feel the same way when they take it…”
Now, I ask you, how can a drug torture one group of human beings but be a decent and humane treatment for another group? Answer: It cannot. Haldol IS torture, pure and simple, for nearly everyone who takes it. Just ask people! You cannot label one group tortured by a drug and the other “humanely treated” who endure the exact same effects. In truth the only group of humans who like Haldol are hospital personnel, who no doubt appreciate the fact that it in fact it does subdue patients into docility…usually. This means they have less work to do and thus they consider it an effective “treatment.” (Alas, in my case, I confess I was more likely to respond to forcible Haldol injections by stripping naked, defecating on the floor and smearing feces on the wall as by becoming more pliant or compliant. Why they managed not to see the resultant worsening of my symptoms and do something about it I do not know but they persisted in “treating me” and made things worse and worse…Indeed, I screamed more each day than not, for most of the three weeks-plus that I was at Yale New Haven Psychiatric Hospital this past August. So how good a “treatment” was Haldol? Aside from causing me exquisite mental and physical torture, I mean? In point of fact, despite megadoses, no injection made me more compliant, made me into a “nicer,” better patient, and easier to handle. The Haldol, even when probated and regularly forced upon me, didn’t work to their purposes…I was an impossible patient for most of the three-plus weeks I was there, Haldol notwithstanding. So what was the point? And why couldn’t ANYONE see that they were making things worse?
However, that is over with, and what I want now is to tell you that things are going to change, and change radically. I may not have your support in all of it, or any of it, perhaps, but I an attaching the video below as a link because the book it is related to was deeply influential both on what I wanted and did not get at Yale, and on what and why I am doing what I am doing now. The book, as I have mentioned before is Anatomy of an Epidemic, and the video gives a good hour long summary of it. It is a good place to start if you have difficulty reading a whole book on the subject or simply would like an idea of what you are getting into.
But first of all, the video doesn’t tell you this, “Mad In America” does — Robert Whitaker’s earlier book on the treatment abuses of the mentally ill in America — the foxes are guarding the chicken house. What I mean by this is: the Big doctors, by and large the influential ones who affect how our doctors treat us, are in cahoots with the Big Pharma drug companies in developing and promoting drugs that never worked and basically never had a chance to “work” because they were pushed into production and sales before any real research was done.
Maybe you don’t know this but listen: Thorazine was never a real “anti-psychotic” drug. It was a tranquilizer, a major tranquilizer. That’s what they used to more honestly call it. It calmed and tranquilized patients so they were more amenable to hospital treatment or the lack thereof. This was good for all, because the fact that patients were quieter meant that the nurses and aides got to show their kinder, nicer, nursier nursing sides to these “sick” patients, and the “drugged up” patients stopped fighting and finally appreciated being taken care of. It seemed a better situation for all, all ‘round, at least in the big state hospitals where megadoses of Thorazine were routinely handed out to “chill” patient populations into complacency. Less violent/resistant patients meant that the nursing staff could act a bit more like their job descriptors.
But now, suddenly, because someone was calling Thorazine an “anti-psychotic” drug as a marketing ploy, as if it treated the actual psychosis itself, they began to believe that it did something “anti-psychotic,” which in fact it never did. Not really. Not if you asked anyone who was treated with it. It never really helped anyone’s core symptoms. It just dulled you so profoundly you didn’t give a damn, or worse, it made you so mad with akathisia that you forgot how crazy the voices could make you feel, because you were literally wild with internal restlessness and other “antipsychotic” side effects and you had to pace all day or rock in your chair or do other “really crazy-looking shit” the doctors told you was just a part of your illness. Once Thorazine was thought of as a treatment drug, rather than as a behavioral modification drug, it changed the game altogether. It changed everyone’s thinking about schizophrenia (and by extension all mental illnesses) in a way that seems to have altered the course of American history itself. Certainly it changed American psycho-active drug-manufacturing for good, though I can only wonder at those involved with the actual design of drugs and how they can do what they do, surely being aware on some level that what they do has no foundation in science whatsoever. Let alone in honest research…
What am I talking about? Well, if Thorazine, which was originally used for anesthesia, was really just a behavioral modification drug, really, honestly and truly, and did not, if truth be told, treat or remediate any so-called schizophrenia symptom, then what the hell was all this dopamine hypothesis and research all about in the first and the last place? Because any supposed honest research started with Thorazine’s mode of action on the neuron’s dopamine 2 receptors. Supposedly, said those brilliant researchers, looking to explain how chlorpromazine/Thorazine “treated” schizophrenia symptoms so effectively, the drug works by blocking D2 receptors on the post synaptic neuron (Don’t worry if you don’t know what I am talking about…just keep reading).
The point is, Thorazine and dopamine have been inextricably linked for and to the next four decades of schizophrenia research, and all subsequent drug development stemmed from that link. Once that connection had been made, ridiculous and wrong as it was (schizophrenia and dopamine being related, or even correlated, simply was never shown), the stage was set for the “revolution” in brain illness research that has brought us such travesties as “bipolar infants” as young as 2 years old, and the H-Bomb-mushrooming of ADHD cases that threaten themselves to cluster-bomb into more bipolar disability cases than the country can conceive enough SSDI for…And thence to such further travesties as doctors using a brutally potent “atypical” “antipsychotic” (which is in truth no more “antipsychotic” in action than thorazine) like Zyprexa for “off-label” uses like anxiety disorders. Why? For fear of using benzodiazepines, perhaps, but just as often in conjunction with those drugs from hell. Drugs like Ativan and Xanax and Klonopin that are prescribed for people with “major mental illnesses” and the walking wounded as well, both like water, prescriptions that cause devastation in their wake and much more anxiety than they resolve.
It seems to me that for every MD who knows never to prescribe a benzo for anything but occasional use and refuses to, there are 40 who say, “take this three times a day and don’t call me unless you have problems”…expecting no calls.
But I am side-tracked a bit. Or have never quite gotten to my subject, which as you know is me, my own “illness” and my own future. I do not know frankly what was done to me in the past vis a vis these drugs, that is, what was caused by what. As my good friend Josephine says everyone now says, It is what it is and you can’t change it…So I am me, with whatever I am or have. But at the same time, i cannot continue to accept the premise that medications are the only and best way to treat me.
After all, I take meds every day and you all know that I have ended up in brutalizing hospitals regularly, quite despite this. I was hospitalized just this past August, in fact and this past winter too…So what good has been my taking meds, including 2, not just one but two atypical antipsychotic drugs, if they do not work to keep me out of the hospital? Not much, I venture to say. Not much…
Well, but…If they have enabled me to do art and write poetry (when I did that) then they were very good drugs for me indeed. For that is my fear: That I can only do art or write, even if just in my journal, when I take these medications. If so, those would be two very good reasons for me to feel it necessary to keep taking them. I cannot live without something worthwhile to do, and I have no family, no children, no purpose, no career, nothing else but art and writing to live for…
That said, what is the proof that my medications are what make me ME? That they make me write and do art? Essentially and absolutely? None at all. And there is much suspicion that the meds can do harm both in the short and long-term. Nothing at all is known about what happens when people take these drugs for decades. I am not sure I want or need to be that particular guinea pig. Now, “Dr Angela” is, as you may or may not know, a psychoanalyst as well as a psychiatrist, so I told her that I wanted essentially what Joanne Greenberg’s “Hannah Green” got from “Dr Fried” (in reality it was Frieda Fromm-Reichmann, the renowned psychoanalyst who successfully treated Greenberg’s schizophrenia) in I Never Promised You A Rose Garden…No promises, perhaps, no rose gardens, but at least the opportunity for cure, recovery, and an end to treatment. And NO MORE MEDICATIONS, WHICH WOULD TIE ME TO HER PERMANENTLY more or less.
I am off the first drug, Zoloft, and have been for more than a month. But it is not easy. I am bone-weary and feel like crying every day. Feel like I have never NOT been tired, never not fought off hopelessness and the feeling that if I were told I had leukemia I would cheer, “Finally! Thank god it’s over!”. That’s the truth, people. I sit in my chair, the same one I sleep in, and I sit in it virtually all day long. And though I am not addicted and do not need to (most of you know how easily I quit smoking when I need or want to) I occasionally smoke a cigarette just to ease the pain…which is physical as much as it is mental and emotional. I may not seem depressed to those of you when you see me, because I rarely “let them see me sweat” and would never burden you with me if I can help myself. But there is also the fact that if and when I see you, just that fact cheers me, lifts my spirits, thank god, and is a rescue and a blessing, so thank you for that much! The nights are hard, but sometimes the days are harder…Nevertheless, Dr Angela has agreed NOT to speak to me of going back to the Zoloft, not unless I ask for it, because she understands that I want to tough it out, and that i believe that antidepressant drugs cause more depression than they cure. I believe if this is a relapse it is solely or largely because I started taking Zoloft again in 2007, when forced to at Mt Sinai, even though I told them I was grieving Lynn L’s death and because of Joe C’s illness and they ought to let me grieve! If I had been taken off it promptly, or never put on it, maybe I would not be such an easy prey to despondency now.
Nevertheless I am going to go on the record of the past predicting the future, and NOT take Zoloft (as of now) and “get through this somehow…” because despite everything, I haven’t died yet, not of despair, and while i have done a lot of damage to my body, I have managed NOT to kill myself so far…Chances are, then, that I will not. Of course the future is unknown, but all I can say is that I do not want Zoloft or any AD drug at this moment, and can take the pain.
I have cut down on the Topamax, to 200mg but because of recurrent migraines need to keep that where it is for now. The next drug to go will be Abilify. I would rather we stop the Geodon next, but I do not think I can tolerate taking Abilify sans Geodon — not without being incredibly irritable — whereas Geodon without Abilify basically does nothing for me. A steady reduction, not too slow, but not so rapid I cannot tolerate any symptoms that develop. The whole point, in the end, is that should I develop symptoms (and that is not a certainty) we are supposed to be able to deal with them in therapy and not go running to the hospital or back to some drug.
(Okay, this is the point in the argument where even I start getting nervous. But I am determined to do this…I want it, I want it, and I need to try it ONCE in my life before I die. I need to know what I know, what I can know about what I need and do not need in terms of psychoactive medication, if that is even possible… Some much depends on placebo effects you know, and on influences of that sort that I wonder if any of it can be sorted out, and how much is going to be sheer determination?)
Oy, it is getting late, or I would continue. But I need to sleep and so do you. I am certain there is much more I ought to have said or explained and did not. Feel free to ask questions or query me about your own concerns if you have them…I am open to any thing, except anger.
Thank you all for your love and concern and if for nothing else than for simply being there to listen and read this.
Large picture I did at Yale Psychiatric Hospital, the second one.
The pictures below are actually only 2.5 by 3.5 inches and are artist trading cards. I drew many of them, especially when I did not feel like working on my larger drawings at the hospital.
In mid-February, after a week out of the hospital (and you can read about my hospitalization by scrolling down to the previous post, but, in brief, this had been at Hartford Hospital’s Institute of Living, during which I was kept in seclusion for the larger part of a four week stay and put multiple times, sometimes twice a day for many hours in 4-point restraints. Why? Why? Although I ONCE threw a chair, they told me it was for “not following directions.” To add insult to injury, every incident in which they restrained me was accompanied by three injections in the buttocks of Haldol, Ativan and Benadryl, despite my policy of passive, completely non-violent non-resistance.)
In any event, in mid-February, after I had spent just a week at home, I became acutely psychotic again, and in consultation with the only doctor I trust, a friend drove me to Yale New Haven Hospital’s emergency department. There, after a very long and arduous wait — alas, I cannot say much that is good about Yale’s ED. It felt like the psych/alcohol patients – and there were no discriminations made between the drunks and anyone else — were lined up on their beds in the hallway like buses at a terminal for what felt like “miles.” In fact at one point there was probably a line 15 gurneys long snaking around the corner until I could not see the end.
I was there for two and a half days, maybe longer, I do not recall. In fact, I remember nothing about my ED stay after I was finally “admitted” to the actual psych portion of the ED, as opposed to the hallway. I believe I was finally given medications, but also that I was no longer permitted access to my artist crayons, which meant that I only wanted to sleep and likely did until I was admitted to the Yale Psychiatric Hospital, a street or two away.
To say that my experience at YPH was an order of magnitude better than it had been at the IOL or even at Natchaug Hospital is truly not to give YPH enough credit. I scarcely want to mention the other two hospitals in the same sentence, that is how different Yale is and I say that even though I once considered Natchaug my “gold standard.” No longer, no longer. I think Natchaug was decent once, but only because of the civilizing and humanizing effects that the director of nursing, Sharon Hinton, APRN, had on the hospital. Once she left, the whole place went to pot, as evidenced by my experience during the last two stays, which went progressively from bad to terrible without her there…literally without her protection I was brutalized by a dehumanizing medical staff that had been left to do whatever it wanted to on its own, to hell with the consequences to the patients.
Be that as it may, and we know that the Institute was never humane, Yale took me completely by surprise. I was hard to surprise, and hard to convince that they were for real in their gentleness and kindness, let alone in their determination to treat me and everyone there with respect and dignity. I was certain that they would prove me right, that SOMEONE would be put into restraints, that someone would be violent enough to push their buttons and get 4-pointed. But it never happened, not in the entire three weeks I was there. Not even when a patient threw a punch or a push. Not even when a patient screamed bloody murder or used foul language. Nothing that earned me or anyone else seclusion or restraints elsewhere even came close to pushing the staff’s anger buttons at Yale. Instead, they persisted in using persuasion and gentleness and kindness…and if anyone lost it, if anyone became angry and could not keep it together, so far as I could tell, that staff member took themselves away from the situation to cool down, and did not take it out on the patient.
The most amazing things happened. No one forced me to do anything. Not even to take medication. I agreed to take it, after some discussion with the doctor and social worker…but when I evinced some doubt about the side effects, instead of pooh-poohing them as the doctor had at the Institute, Dr Milstein agreed with me, saying that the Zyprexa definitely increased appetite, and that it was not imaginary or something that was in my control, the way Dr Banerjee did at IOL. Instead, he and the other team members not only agreed to help me control what I ate, but went out of their way – I believe they actually went “Stop and Shopping” – to provide me with my own private supply of raw vegetable snacks in the staff refrigerator to eat at any time of the day…just so I wouldn’t have to be tempted by the hospital snacks of Doritos etc.
Dr Milstein asked me not to worry about what they did or did not do “extra” for me, and I tried not to. But when two large bottles of brand name Diet Coke kept appearing for me every day, and when the resident was sent to buy me batteries for my personal pencil sharpener (with a grinder not a blade), just so I could continue to do my artwork and not rely on the staff to sharpen my pencils in the back, well, I knew 1) they were truly watching out for me and treating me with TLC, or what certainly felt like extraordinary care, and 2) they were in fact spending “extra” money, if not indeed their own money just to supply these special needs…All of which – or NONE of which would have mattered at any other hospital or to any other staff. If I had no pencil sharpener, who would care? If I had to eat hospital food, who gave a damn? Dr Banerjee basically said it was MY fault and only my fault if I gained weight on Zyprexa, that none of his other patients, the good ones, ever did. But at Yale, all these matters were important to me, and so they were important to Dr Milstein to to Chris Simpson the social worker and to the other team members. Not just as a matter of words, but to be taken care of so I could both take the Zyprexa and do art.
Just as important, Dr Milstein took at least a half hour every single day, and I think sometimes it was more than that, simply to talk with me and listen to what I had to say. Even if it was only to rant about how badly I had been treated at the IOL. He repeatedly told me that he just wanted me to learn to trust again, to believe that not everyone was against me or would hurt me…And if I did not learn that precisely, I did eventually come to believe that the staff at Yale were trustworthy and kind and meant what they said about their NO restraints and NO seclusion policy, for everyone. I may had still had frissons whenever someone screamed or threw a fit, panicking, believing that 4-point restraints were finally going to be resorted to. PTSD is not that easily overcome after all. But I grew more trusting, and by the time of discharge, I was able to thank them all for everything, to know that they had gone out of their way for me, and not feel too guilty.
I did a fair amount of art while I was at Yale Psychiatric Hospital. I will post more in the coming days.
“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~