susannah cahalan
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first intro’d to Susannah while watching brain on fire – https://en.wikipedia.org/wiki/Brain_on_Fire_(film)
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revisit here:
TIME (@TIME) tweeted at 6:00 AM – 10 Nov 2019 :
Review: A gripping, insightful read, “The Great Pretender” probes the gaps that medical science has yet to fill when it comes to understanding mental illness https://t.co/YQKnL0bbVj (http://twitter.com/TIME/status/1193513638260293634?s=17)
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adding page while reading: (2019) the great pretender – thanks library
(pages are ebook loc)
notes/quotes:
160
this fear (when you meet others who don’t share your reality) emerges from the sneaking realization that , no matter how sane, healthy, or normal we may believe we are, our reality could be distorted, too..
193
despite the shared uncertainties, psychiatry is different form other medicine in crucial aspects: no other discipline can force treatment, nor hold people against their will..t
204
my illness was not comfortably neurological.. people no longer implied that the trouble was all in my head
215
as traumatic as being diagnosed w melanoma was in my late teens, it did not feel like the disease touched a part of my soul the same way that my experience w psychosis did.. psychosis is the scariest thing that has ever happened to me.. it rocked my sense of self, my way of seeing the world, my comfort in my own skin.. and shook the foundations of who i am.. no amount of fact gathering could arm me against this truth: we are all hanging on be a very thin tread, and some of us won’t survive our fall..
236
she had remained misdiagnosed for 2 yrs.. unlike the single month i had .. she would probably never regain the cognitive abilities she lost.. she was my could-have-been, my mirror image
what does mental illness mean, anyway, and why would one affliction be more ‘real’ than another?
258
(on my quote – i didn’t have a psychotic condition).. this father felt betrayed hearing me utter the same unfair distinction that he so often heard from his son’s drs.. ‘the brain is a physical organ and physical disease occurs w/in the brain. why does that make it a ‘psychiatric condition’ instead of a physical ‘disease’? .. he was right of course.. how had i so wholeheartedly embraced the same unproven dichotomy that could have confined me to a psychiatric ward, or even killed me..
where did the divide lie between brain illness and mental illness, and why do we try to differentiate between them at all?
608
(from rosenhan’s 1973 study/experiment/paper – on being san in insane places) – ‘we now know that we cannot distinguish insanity from sanity’ – 8 people – including rosenhan.. 3 women, 5 men, a grad student, 3 psychologists, 2 drs, a painter, and a housewife.. volunteered to go undercover in 12 institutions in 5 states on the east and west coasts and present the same limited symptoms: they heard voices.. that said ‘thud, empty, hollow’.. all admitted.. the length of hospitalization ranged from 7-52 days.. w an avg of 19 days.. during their hospitalizations, 2100 pills were prescribed and admin’d to these healthy individuals.. (they had learned to cheek or pocket them and spit them out so non ingested).. once inside.. it was up to them to get themselves out.. by convincing staff he was sane.. yet.. from moment of admittance.. clinicians viewed all behaviors thru prism of presumed mental illness.. 30% of fellow patients noticed.. but to staff.. ‘having once been labeled schizo.. there is nothing the pseudopatient can do to overcome the tag..’ rosenhan wrote
641
rosenhan ‘how many people might be ‘sane’ outside the psychiatric hospital but seem insane in it – not because of craziness resides in them.. but because they are responding to a bizarre setting’..
that’s everywhere.. hari rat park law.. and crazywise.. et al.. sane in society today really means insane..
738
(on wanting to know more from rosenhan who died in 2012 – but the silence/ing – part by him.. not wanting to hurt devoted workers in the field) i marveled at how psychiatry could be so defensive, when so many others had acknowledged the problems before rosenhan arrived to document them w hard data. why attack the messenger..
782
met w lee ross – friend of rosenhan’s – worked together at stanford 30 yrs.. also here.. zimbardo – his study was published in 1973, not long after rosenhan’s.. stanford prison experiment made zimbardo a legend tame way on being sane in insane places did for rosenhan
864
rosenhan’s study.. not to challenge psychiatry, nor even a nellie bly inspired curiosity about conditions.. but w a student request in his abnormal psych honors class at swarthmore college in 1969.. students saying the course was too concetpual and abstract.. so i said, ‘ok if you really want to know what mental patients are like, become mental patients’
875
in the face of such inexplicable acts (1969 – bomb threats on unis, manson murders, plane hijackings, nixon prolonging nam, ..) on a global scale, madness no longer seemed to be restricted to teh asylums.. some young men who had low draft numbers exploited the system by pretending to be our of their minds to get out of the war.. why not, after all? everything seemed insane
886
in 69 – madness was no longer shameful; it was for the poets, ,the artists, the thinkers of the world.. it was amore enlightened way to live.. fritz perls’s slogan (popularized by timothy leary): ‘lose your mind and come to your senses’..
and then there were the drugs.. 2m americans had dropped acid by 1970, getting a glimpse of the ‘other side’ and joining the ‘revolution by consciousness’ convince, as joan didion wrote ‘that truth lies on the far side of madness’.. they did not want what society (their schools, their parents, nixon) needed from them.. young people moved to utopian communities in the middle of nowhere.. who is truly sane in a war ravaged world gone mad.. ken kesey’s one flew over the cuckoo’s nest did more than any other book to incite the pubic against psychiatry.. thought the book was intended to critique conformity on a grand scale, the novel will forever be associate w the evils of psychiatry.. the book , as one psychiatrist put it, ‘gave life to a basic distrust of the way in which psychiatry was being used for society’s purposes, rather than the purposes of the people who had mental illness’
920
which was scarier: using psychiatric labels as a tool of oppression, or the possibility that many of these soviet psychiatrists actually believed that someone who didn’t support communism must be crazy?
and yet this exploitation of psychiatry was also happening in america – by the white house in particular.. to discredit daniel ellsberg.. – pentagon papers..
941
r d laing: theorized that insanity was sane response to an insane world.. schizophrenia, laing would write, was a super sanity – a kind of insight only those w truly open minds could achieve.. ‘light began to break thru cracks in our all too closed minds’
higashida autism law et al
952
alongside his rise as a guru.. laing seemed to grow into a caricature of kookiness.. as he flirted w ‘rebirthing’ sessions and other bogus 70s era treatments, along w copious drugs and alcohol..
964
the anti psychiatry movement made not so strange bedfellows w the civil rights movement. both united against a common enemy: the power of ‘the institution’ that decided what was ‘normal’ or ‘acceptable’ in society…
974
at swarthmores.. sit ins et al.. the crisis of 69 – week of canceled classes.. ended when beloved president courtney smith suffered a fatal heart attack in a campus stairwell.. one writer suggested smith died ‘from a broken heart’.. atmosphere on campus that spring was electric.. and these trade winds helped steer a delegation from rosenhan’s abnormal psych seminar to approach him.. a meeting that would set in motion a chain of events that would change the world
985
rosenhan had just arrived on campus the previous semester.. but.. walks.. as a guy who owned the place.. his previous position had been as a lecturer at princeton’s dept of psych.. and a research psychologist at ed testing service.. a group of test makers that helped shape the sat.. did studies to see if born good or bad.. testing how children respond to winning/losing/name-calling et al.. but rosenhan’s real talent was teaching. he had a way w people, a seductive quality
ugh
1412
clinicians had grown so reliant on these objective facts in the form of charts, percentages, and test results that they no longer saw their patients..
1789
his (carl’s) fifth and final hospitalization was the sot important of all- because it never happened.. hospital said – would never happen here.. carl was supposed to go.. but waylaid by flu and rosenhan didn’t replace him.. the result is, in my opinion, the most damning part of the study.. over the next 3 mos, the staff kept an eagle eye out for any pseudo patients… of 193 new patients.. staff members labeled 41 w high certainty as probable pseudo patients; psychiatrists id’d 23.. proved once again that we react to the world by what we are primed to see..
1809
(then article comes out) – august 1972 – summarizing his findings as follows: ‘the article presents experimental data on our inability to distinguish sane from insane people in psychiatric institutions. it also briefly describes the experience of psychiatric hospitalization as observed by pseudo patients’..
1830
everyone wanted a piece of him, because he had proven what everyone already suspected was true..
1841
the study smashed thru the one way mirror separating the layperson from psychiatric jargon and its judgment..
1929
we were mastering the great mysteries of the world, – conquering space, cancer, and infertility. but we still couldn’t properly answer this question: wha tis a mental illness? or better yet, what isn’t?
tweet while reading:
Mad In America (@Mad_In_America) tweeted at 5:47 AM – 12 Nov 2019 :
Refugees and Immigrants Experience Increased Medical Coercion
#Refugees and first-generation #immigrants of African descent are at greater risk of experiencing medical #coercion.
#psychiatry #mentalhealth
https://t.co/Qb6rZbqorl (http://twitter.com/Mad_In_America/status/1194235239893229568?s=17)
2261
even though mainstream psychiatry ignored it, a series of ‘med free sanctuaries’ spurted up around california.. the most prominent person to take on the mantel of ward 11 was loren mosher, head of nimh’s center for studies of schizo who saw an opp to take ward 11 to next level… he recruited ward 11’s cast of characters – including alma menn and voyce hendrix (related to jimi) to start soteria house.. an experiment in communal living located in a 12 room victorian house in downtown san hose.. here a group of 6 people who would have ended up in an asylum lived together outside of it.. the avg stat was 42 days..
one of the board members who helped mod soteria house – and here it all comes full circle – was david rosenhan.. in the midst of the success of his groundbreaking study whose theories questioned the powers of traditional psychiatry and its hospitals
soteria house
easy to dismiss soteria house, as man do (and as i did at first) but its mission captured something essential missing from the institutional model: focusing on the patient, not the illness
the soteria model continues in places like alaska , sweden, finland, and germany.. belgium..
2303
(on the crawler.. being normal when not crawling) bill: ‘for a lot of people who are labeled psychotic, if you keep them out of the area that their psychosis is focused on, they can see normal’ ..this observation would become the linchpin of rosenhan’s work – that crazy people didn’t act crazy all the time; that there was a continuum of behavior that ran from ‘normal’ to ‘abnormal’ w/in all of us.. we all slide around it at various times in our lives, and context often shapes the way we interpret these behaviors..
2385
the uproar that followed the publication of ‘on being sane in insane places’ left america w the urgent question: what to do about it.. those rosenhan and his study likely did more to cement public opinion against psychiatric hospitals than any other academic study, the process to close these institutions had started decades earlier – most significantly w the brith of john f kennedy’s sister.. rosemary
2395
rosemary kennedy’s first hours on earth were unimaginable.. the dr was late when her mother’s water broke. to slow the delivery until he arrived, the nurse told rose kennedy to hold her legs together, and when that wouldn’t stop the birth, the nurse pushed the baby’s head back into rose’s birth canal, restricting oxygen to he newborn’s brain..
patriarch joe kennedy did his best to keep rosemary’s condition – the official label was ‘mentally retarded’ out of the public eye.. in a family as ambitious as the kennedys, this made rosemary a liability.. as her behavior grew more unmanageable, joe sr looked for options outside the convent..
2417
lobotomies were not intended for someone w rosemary’s impairment, but that was no impediment.. lobotomies were used to treat everything from homosexuality to nymphomania (uncontrollable/excessive sexual desire in a woman) to drug addiction, all of madness lumped together and treated w one simple surgery.. 60-80% of lobotomies conducted on women.. even when women made up smaller segment of psychiatric population in state hospitals.. she regressed into an infant-like state.. mumbling a few words, sitting for hours staring at the walls, only traces left of the young woman she had been.. this was a vivacious high spirited young woman who loved dancing and could charm almost anyone.. her mom so disturbed.. possible she didn’t visit her for 20 yrs
2438
rosemary and the ‘care’ she received at one of the most esteemed hospitals in our country made a deep impression on her brother jack, the future president. in feb 1963, 8 mos before he was assassinated in dallas, pres kennedy announced: ‘i have sent to the congress today a series of proposals to help fight mental illness and mental retardation.. .. long neglected.. cause more individual/family suffering than any other condition in american life.. it has been tolerated too long.. it has trouble our national conscience, but only as a problem unpleasant to mention, easy to postpone, and despairing of solution.. ‘
2459
jfk signed into law the 1963 community mental health act.. on of the first steps in the phasing out of psychiatric hospitals
lyndon johnson followed jfk’s measure by signing a bill that led to the creation of medicare and medicaid in 1965 – fed health care ins for poor/elderly.. and assigning the fed govt the role of ‘payer, insurer, and regulator’ of mental health services..
2481
in response.. hospitals didn’t revamp and update.. they closed.. from jfk death 63 to rosenhan’s study 73.. resident population in state/county psychiatric hospitals dropped by almost 50%.. from 504,600 to 255, 000.. ten yrs later.. drop another 50% to 132,164.. today 90% of beds available when jfk made speech have closed as country’ population has nearly doubled.. most opportunistically, shuttering these institutions would save some serious cash.. making everyone along the political spectrum happy.. the ‘mental illness treatment system had been essentially beheaded’ wrote psychiatrist e fuller torrey.. dreams of community care were never actualized because the funds never materialized.. the money was intended to follow the patients.. it didn’t.. at best provided nominal care to least impaired.. those w most severe forms were ignored..
2491
the govt policies that closed these institutions did not embed people more deeply into the community – they pushed them further outside onto our streets and into our homeless shelters, even as we’ll see, into our prisons..
crazywise et al
2754
what else then.. was misrepresented in rosenhan’s study? (exaggerated his symptoms.. and some portrayals of his care).. i’d only begun getting to the truth after my convo w bill – and critique of spitzer.. now i understood that the other 6 pseudo patients were the only ones who could fill out the real story
2789
while spitzer’s critique on rosenhan his best paper.. rosenhan’s findings helped spitzer with solution he’d been working toward – set the groundwork for spitzers’ dsm-iii.. it ushered psychiatry back into the good graces of mainstream med.. not strict boundaries in place that kept psychiatrists form drawing outside the lines if they wanted reimbursement from ins co’s.. the goal was to make diagnosis standardized in such a way that someone in maine .. would be diagnosed same as arizona.. shared language.. reliability..
dsm iii – like the bible/constitution… turned madness into diff types of disorders that each responded to specific drug treatments.. creating ‘rich pickings for the pharma industry’.. and it didn’t stop w psychiatrists, extending to psychologists, social workers, and lawyers.. .. criminal to custody.. courtroom s to allocation of special needs in schools..
one of pitzers’ pet projects was to define mental disorder.. a pursuit he had been fixated on since the homosexuality debacle (he got it taken out)
2822
the manual used the term disorder – which implied a stronger bio connection (ie: not overbearing mothers or weak fathers).. and threw away reaction, a relic of the psychodynamic era..
2833
no matter how little proof was there, psychiatry fully embraced the illness model – physical.. – instead of repressed egos and ids or frigid mothers, you had screwed up brain chemicals or faulty (but not our fault)wiring.. patients who ‘no longer must carry the burden of blame and guilt because they have become ill’ and the world should ‘behave towards patient just as they would if he had cancer or heart disease’
spitzer while writing manual often asking self – would rosenhan and his pseudo patients get past this one?.. spitzer was determined to make sure that the publicity nightmare that rosenhan and his 7 pseudos generated would never happen again..
2844
w/o rosenhan’s study, allen frances told me, ‘spitzer could never have done what he did w the dsm iii
3040
‘the greatest obstacle to discovering is not ignorance – it is the illusion of knowledge.’ – daniel boorstin
3463
describing jails as psych hospitals that inspired rosenhan’s study.. alisa roth in her book insane: ‘it’s true hospitals have mostly disappeared.. but none of the rest of it has gone away, not the cruelty filth bad food or brutality.. nor most importantly hast he large population of people w mental illness who are kept largely out of sight .. only real diff.. now happens in jails/prisons’
3485
‘people have documented histories of mental illness.. they get to prison and suddenly they’re not mentally ill, they’re just a bad person’ david fathi director of aclu’s national prison project..
3496
dr torrey.. who wanted me that it’s worse today than it was during rosehan’s time.. does have some solutions.. adding more beds.. in state hospitals which would reduce wait times and get people out of jails..
3806
on rosenhan being a fraud – to almost everyone i spoke with, his abandonment of the study that made his career was the most concerning, even damning, evidence that something was seriously amiss..
‘look at their focus of study and you can count on it that that’s what they have problem with.. that’s why they study that particular area’ psychologists share one common trait
rosenhan does not seem to be the man i’d believed in
marshmallow study questioned.. milgram’s shock tests questioned.. among hardest hit – zimbardo’s prison study..
3894
psychologist peter gray, who had removed zimbardo from his psychology textbook in 1991.. to d me that he sees this as a ‘prime ie of a study that fits our biases.. there is a kind of desire to expose the problems of society, but in the process cut corners or even make up data’.. he said this is happening more often now because there are greater numbers of postdoctorates competing for fewer jobs and grant resources.. ‘there is an epidemic of fraud’..
not limited to social psych.. ie: parkinsons, dentistry.. stem cell.. elizabeth holmes..
3917
i noticed fraud everywhere now.. and this fraud, played out every day in our academic journals and our newspapers.. social media feeds.. breeds an anti science backlash born of distrust.. ie: measles outbreak.. how many times can we be told that this or that was ‘proven’ in studies – only to be warned the next day – before we start to doubt all of it..
the lay public today is fully aware of he deep connections between big pharma and psychiatry.. cemented during creation of dsm iii
sicko et al..
3939
author and journalist robert whitaker, who has created a powerful arena for challenging tradition al psychiatry on his blog, mad in america, based on his 2001 book of same name sums up the outrage: ‘for the past 25 yrs they psych estab has told us a false story.. that schizo, depression, and bipolar illness are knowns to be brain diseases.. that psych meds fix chemical imbalances in the rain, even though decades of research failed to find this to be so.. told us that prozac and other 2nd gen meds were much better/safer than 1st gen drugs, even thought clinical studies had shown no such thing.. most important.. the psych estab failed to tell us that the drugs worsen long term outcomes’
3998
for every miracle like me, there are a hundred like my mirror image; a thousand rotting way in jails or abandoned on the streets for the sin of being mentally ill; a million told that it’s all in their heads..
belinda lennox: i think we should be honest about – acknowledge how limited our understanding is.. that’s the only way we’ll do better’
if solutions seem too good to be true, too categorical, too concrete, they usually are..
4007
rosehan’s study thought only a sliver of the pie, fed into our worst instincts: for psychiatry, it bred embarrassment, which forced the embattled field to double down on certainty where none existed, misdirecting years of research, treatment and care. for the rest of us, it gave us a narrative that sounded good, but had appalling effects on the day to day lives of people living w serious mental illness..
rosenhan did not create these outcomes, but his study enabled them.. and now psychiatry is overdue for a reassessment of the terms we deploy, the new techs on the horizon, the way we treat the sickest
perhaps by realizing they are the least insane.. crazywise and higashida autism law.. et al..
let’s focus on health for 8b.. ie: cure ios city via 2 convers as infra
‘the tradition of drawing these sharp lines when patients are diagnosed probably doesn’t follow the reality..’ ben neale.. the hardline differences among the terms we use do not have scientific validity
not to mention.. we have no legit alternative.. so unethical in the first place.. ie: costello screen/service law
let’s try daily curiosity as only label
via tech s it could be.. listening to every voice everyday
4051
an interest in the connection between the gut and the brain has led to some fascinating research..
gut ness
4072
(on all the crazy new techs to collect data): data alone will not give us the answer to eh question: if sanity and insanity exist, how shall we know them? but it might help
not about gathering data.. it’s about gathering the right data.. ie: self-talk as data.. and then using that data for the right thing.. ie: augmenting interconnectedness.. makes talk of sanity/insanity irrelevant
krishnamurti measure law et al
4094
in other words.. fresh eyes may just ope up a new path.. and as it turns out, the advances in pharma con’t even need to be new.. another exciting path happens to have been paved long ago.. ie: lsd and psilocybin as treatment for everything form depression to ptsd.. talk therapy.. et al
that’s not the deeper issue.. let’s get to the roots of healing .. via maté basic needs
4137
these impossible questions have plagued us forever – the physical vs mental, brain vs mind – and they have profound, life or death consequences.. we consider some illnesses to be worthier of our compassion than others.. and this has to change
again.. instead.. let’s work on well being for 8b.. today we can leap to that.. for (blank)’s sake.. a nother way
the change doesn’t just require adding beds somewhere and letting people languish, it means taking a broader look at the infra of each person’s life .. and the myriad ways environ shapes both sickness and health
indeed.. let’s go for this infra: 2 convers as infra
4149
living in cities linked to higher rates of schizo.. many have posited that urban environs are missing one element found in smaller, more tight knit areas: support and community.. a key part of the healing element found on ward 11 and in harry lando’s hospitalization
actually.. go deeper: maté basic needs.. which today.. we can facilitate for 8b people.. wherever they are
4159
one popular therapy that takes these cultural judgments in to account is open dialogue therapy.. which is meant to create an immersive community support system .. ie: soteria house et al
2 convers as infra – has to be deep enough convos.. and every person.. every day..
4181
you can even augment the effects of a placebo w a caring supportive environ..
deeper – money (any form of measuring/accounting) as the planned obsolescence ie: ubi as temp placebo..
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tedxamsterdam 2013 – [https://www.youtube.com/watch?v=oqrzvYnrI9A]
8 min – the clock test – i drew all numbers on right hand side of clock – i was neglecting that left side.. proof i didn’t have a psychiatric condition.. brain is on fire..
217th person in the world to be diagnosed w this – body’s immune system targets/attacks receptors of brain (hippocampus/limbic systems)
12 min – i think about all the people who are mis diagnosed.. how lucky i was to meet a man who thought outside the box… i want everyone to be as lucky as i was (wrote book)
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2019 – 1 min video – meet author susannah cahalan [https://www.youtube.com/watch?v=vQPBvz9nZFU]
about our quest – what is mental illness.. if sanity/insanity exist.. how will we know them
goes into 3 meanings to pretender
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ᗪᗩᐯᕮ SᑎOᗯᗪᕮᑎ (@snowded) tweeted at 0:15 AM on Mon, Dec 09, 2019:
My family have been overwealmed by the social media response to news of my illness. Sat I had two small holes drilled in my head the dried blood was flushed out and holes replugged. I’d suffered 30% compression in the left hemisphere. Discharge today fully restored! Will blog
(https://twitter.com/snowded/status/1203936223775080448?s=03)
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find/follow Susannah:
https://www.susannahcahalan.com/
Susannah Cahalan (born 1985) is an American journalist and author, known for writing the memoir Brain on Fire, about her hospitalization with a rare auto-immune disease, anti-NMDA receptor encephalitis. She has worked for the New York Post.
A feature film based on her memoir was released in June 2018 on Netflix. Chloë Grace Moretz played the role of Cahalan
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be you. 