14:53
TEDGlobal 2012

Elyn Saks: A tale of mental illness -- from the inside

Filmed:

"Is it okay if I totally trash your office?" It's a question Elyn Saks once asked her doctor, and it wasn't a joke. A legal scholar, in 2007 Saks came forward with her own story of schizophrenia, controlled by drugs and therapy but ever-present. In this powerful talk, she asks us to see people with mental illness clearly, honestly and compassionately.

- Mental health law scholar
Elyn Saks asks bold questions about how society treats people with mental illness. Full bio

So I'm a woman with chronic schizophrenia.
00:16
I've spent hundreds of days
00:18
in psychiatric hospitals.
00:20
I might have ended up spending
00:21
most of my life on the back ward of a hospital,
00:23
but that isn't how my life turned out.
00:25
In fact, I've managed to stay clear of hospitals
00:27
for almost three decades,
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perhaps my proudest accomplishment.
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That's not to say that I've remained clear
00:34
of all psychiatric struggles.
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After I graduated from the Yale Law School and
00:38
got my first law job, my New Haven analyst, Dr. White,
00:40
announced to me that he was going to close his practice
00:43
in three months, several years
00:46
before I had planned to leave New Haven.
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White had been enormously helpful to me,
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and the thought of his leaving
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shattered me.
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My best friend Steve,
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sensing that something was terribly wrong,
00:57
flew out to New Haven to be with me.
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Now I'm going to quote from some of my writings:
01:00
"I opened the door to my studio apartment.
01:02
Steve would later tell me that,
01:05
for all the times he had seen me psychotic, nothing
01:07
could have prepared him for what he saw that day.
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For a week or more, I had barely eaten.
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I was gaunt. I walked
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as though my legs were wooden.
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My face looked and felt like a mask.
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I had closed all the curtains in the apartment, so
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in the middle of the day
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the apartment was in near total darkness.
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The air was fetid, the room a shambles.
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Steve, both a lawyer and a psychologist, has treated
01:30
many patients with severe mental illness, and to this day
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he'll say I was as bad as any he had ever seen.
01:37
'Hi,' I said, and then I returned to the couch,
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where I sat in silence for several moments.
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'Thank you for coming, Steve.
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Crumbling world, word, voice.
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Tell the clocks to stop.
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Time is. Time has come.'
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'White is leaving,' Steve said somberly.
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'I'm being pushed into a grave. The situation is grave,' I moan.
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'Gravity is pulling me down.
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I'm scared. Tell them to get away.'"
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As a young woman, I was in a psychiatric hospital
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on three different occasions for lengthy periods.
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My doctors diagnosed me with chronic schizophrenia,
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and gave me a prognosis of "grave."
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That is, at best, I was expected to live in a board and care,
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and work at menial jobs.
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Fortunately, I did not actually
02:21
enact that grave prognosis.
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Instead, I'm a chaired Professor of Law, Psychology
02:25
and Psychiatry at the USC Gould School of Law,
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I have many close friends
02:31
and I have a beloved husband, Will, who's here with us today.
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(Applause) Thank you.
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He's definitely the star of my show.
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I'd like to share with you how that happened, and also
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describe my experience of being psychotic.
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I hasten to add that it's my experience,
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because everyone becomes psychotic in his or her own way.
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Let's start with the definition of schizophrenia.
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Schizophrenia is a brain disease.
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Its defining feature is psychosis, or being
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out of touch with reality.
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Delusions and hallucinations
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are hallmarks of the illness.
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Delusions are fixed and false beliefs that aren't responsive
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to evidence, and hallucinations are false sensory experiences.
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For example, when I'm psychotic I often have
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the delusion that I've killed hundreds of thousands
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of people with my thoughts.
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I sometimes have the idea that
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nuclear explosions are about to be set off in my brain.
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Occasionally, I have hallucinations,
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like one time I turned around and saw a man
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with a raised knife.
03:30
Imagine having a nightmare while you're awake.
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Often, speech and thinking become disorganized
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to the point of incoherence.
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Loose associations involves putting together words
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that may sound a lot alike but don't make sense,
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and if the words get jumbled up enough, it's called "word salad."
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Contrary to what many people think, schizophrenia is not
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the same as multiple personality disorder or split personality.
03:51
The schizophrenic mind is not split, but shattered.
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Everyone has seen a street person,
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unkempt, probably ill-fed,
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standing outside of an office building muttering
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to himself or shouting.
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This person is likely to have some form of schizophrenia.
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But schizophrenia presents itself across a wide array
04:10
of socioeconomic status, and there are people
04:12
with the illness who are full-time professionals
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with major responsibilities.
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Several years ago, I decided
04:20
to write down my experiences and my personal journey,
04:21
and I want to share some more of that story with you today
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to convey the inside view.
04:27
So the following episode happened the seventh week
04:28
of my first semester of my first year at Yale Law School.
04:31
Quoting from my writings:
04:34
"My two classmates, Rebel and Val, and I had made the date
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to meet in the law school library on Friday night
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to work on our memo assignment together.
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But we didn't get far before I was talking in ways
04:45
that made no sense.
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'Memos are visitations,' I informed them.
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'They make certain points. The point is on your head.
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Pat used to say that. Have you killed you anyone?'
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Rebel and Val looked at me
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as if they or I had been
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splashed in the face with cold water.
05:00
'What are you talking about, Elyn?'
05:02
'Oh, you know, the usual. Who's what, what's who,
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heaven and hell. Let's go out on the roof.
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It's a flat surface. It's safe.'
05:08
Rebel and Val followed
05:10
and they asked what had gotten into me.
05:12
'This is the real me,' I announced,
05:13
waving my arms above my head.
05:15
And then, late on a Friday night, on the roof
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of the Yale Law School,
05:19
I began to sing, and not quietly either.
05:20
'Come to the Florida sunshine bush.
05:23
Do you want to dance?'
05:26
'Are you on drugs?' one asked. 'Are you high?'
05:27
'High? Me? No way, no drugs.
05:30
Come to the Florida sunshine bush,
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where there are lemons, where they make demons.'
05:35
'You're frightening me,' one of them said, and Rebel and Val
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headed back into the library.
05:41
I shrugged and followed them.
05:42
Back inside, I asked my classmates if they were
05:44
having the same experience of words jumping around
05:48
our cases as I was.
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'I think someone's infiltrated my copies of the cases,' I said.
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'We've got to case the joint.
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I don't believe in joints, but
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they do hold your body together.'" --
05:59
It's an example of loose associations. --
06:00
"Eventually I made my way back to my dorm room,
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and once there, I couldn't settle down.
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My head was too full of noise,
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too full of orange trees and law memos I could not write
06:09
and mass murders I knew I would be responsible for.
06:13
Sitting on my bed, I rocked back and forth,
06:15
moaning in fear and isolation."
06:19
This episode led to my first hospitalization in America.
06:21
I had two earlier in England.
06:24
Continuing with the writings:
06:26
"The next morning I went to my professor's office to ask
06:28
for an extension on the memo assignment,
06:30
and I began gibbering unintelligably
06:32
as I had the night before,
06:34
and he eventually brought me to the emergency room.
06:35
Once there, someone I'll just call 'The Doctor'
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and his whole team of goons swooped down,
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lifted me high into the air,
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and slammed me down on a metal bed
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with such force that I saw stars.
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Then they strapped my legs and arms to the metal bed
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with thick leather straps.
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A sound came out of my mouth that I'd never heard before:
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half groan, half scream,
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barely human and pure terror.
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Then the sound came again,
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forced from somewhere deep inside my belly
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and scraping my throat raw."
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This incident resulted in my involuntary hospitalization.
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One of the reasons the doctors gave for hospitalizing me
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against my will was that I was
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"gravely disabled."
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To support this view, they wrote in my chart that I was unable
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to do my Yale Law School homework.
07:20
I wondered what that meant about much of the rest of New Haven.
07:22
(Laughter)
07:25
During the next year, I would
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spend five months in a psychiatric hospital.
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At times, I spent up to 20 hours in mechanical restraints,
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arms tied, arms and legs tied down,
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arms and legs tied down with a net tied
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tightly across my chest.
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I never struck anyone.
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I never harmed anyone. I never made any direct threats.
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If you've never been restrained yourself, you may have
07:47
a benign image of the experience.
07:50
There's nothing benign about it.
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Every week in the United States,
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it's been estimated that one to three people die in restraints.
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They strangle, they aspirate their vomit,
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they suffocate, they have a heart attack.
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It's unclear whether using mechanical restraints
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is actually saving lives or costing lives.
08:07
While I was preparing to write my student note
08:09
for the Yale Law Journal on mechanical restraints,
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I consulted an eminent law professor who was also
08:14
a psychiatrist,
08:17
and said surely he would agree
08:18
that restraints must be degrading,
08:19
painful and frightening.
08:22
He looked at me in a knowing way, and said,
08:23
"Elyn, you don't really understand:
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These people are psychotic.
08:28
They're different from me and you.
08:29
They wouldn't experience restraints as we would."
08:31
I didn't have the courage to tell him in that moment that,
08:34
no, we're not that different from him.
08:36
We don't like to be strapped down to a bed
08:38
and left to suffer for hours any more than he would.
08:41
In fact, until very recently,
08:43
and I'm sure some people still hold it as a view,
08:45
that restraints help psychiatric patients feel safe.
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I've never met a psychiatric patient
08:50
who agreed with that view.
08:53
Today, I'd like to say I'm very pro-psychiatry
08:54
but very anti-force.
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I don't think force is effective as treatment, and I think
08:58
using force is a terrible thing to do to another person
09:01
with a terrible illness.
09:04
Eventually, I came to Los Angeles
09:05
to teach at the University of Southern California Law School.
09:08
For years, I had resisted medication,
09:11
making many, many efforts to get off.
09:13
I felt that if I could manage without medication,
09:15
I could prove that, after all,
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I wasn't really mentally ill, it was some terrible mistake.
09:20
My motto was the less medicine, the less defective.
09:22
My L.A. analyst, Dr. Kaplan, was urging me
09:26
just to stay on medication and get on with my life,
09:29
but I decided I wanted to make one last college try to get off.
09:31
Quoting from the text:
09:35
"I started the reduction of my meds, and within a short time
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I began feeling the effects.
09:40
After returning from a trip to Oxford, I marched into
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Kaplan's office, headed straight for the corner, crouched down,
09:45
covered my face, and began shaking.
09:48
All around me I sensed evil beings poised with daggers.
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They'd slice me up in thin slices
09:54
or make me swallow hot coals.
09:56
Kaplan would later describe me as 'writhing in agony.'
09:57
Even in this state, what he accurately described as
10:01
acutely and forwardly psychotic,
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I refused to take more medication.
10:06
The mission is not yet complete.
10:08
Immediately after the appointment with Kaplan,
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I went to see Dr. Marder, a schizophrenia expert
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who was following me for medication side effects.
10:15
He was under the impression that I had a mild psychotic illness.
10:18
Once in his office, I sat on his couch, folded over,
10:21
and began muttering.
10:24
'Head explosions and people trying to kill.
10:26
Is it okay if I totally trash your office?'
10:28
'You need to leave if you think you're going to do that,'
10:30
said Marder.
10:33
'Okay. Small. Fire on ice. Tell them not to kill me.
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Tell them not to kill me. What have I done wrong?
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Hundreds of thousands with thoughts, interdiction.'
10:39
'Elyn, do you feel like you're
10:41
dangerous to yourself or others?
10:43
I think you need to be in the hospital.
10:45
I could get you admitted right away, and the whole thing
10:47
could be very discrete.'
10:49
'Ha, ha, ha.
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You're offering to put me in hospitals?
10:52
Hospitals are bad, they're mad, they're sad.
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One must stay away. I'm God, or I used to be.'"
10:57
At that point in the text,
11:01
where I said "I'm God, or I used to be," my husband
11:02
made a marginal note.
11:04
He said, "Did you quit or were you fired?"
11:05
(Laughter)
11:07
"'I give life and I take it away.
11:09
Forgive me, for I know not what I do.'
11:13
Eventually, I broke down in front of friends, and
11:14
everybody convinced me to take more medication.
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I could no longer deny the truth,
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and I could not change it.
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The wall that kept me, Elyn, Professor Saks,
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separate from that insane woman hospitalized years past,
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lay smashed and in ruins."
11:30
Everything about this illness says I shouldn't be here,
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but I am. And I am, I think, for three reasons:
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First, I've had excellent treatment.
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Four- to five-day-a-week psychoanalytic psychotherapy
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for decades and continuing, and excellent psychopharmacology.
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Second, I have many close family members and friends who know me
11:45
and know my illness.
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These relationships have given my life a meaning
11:51
and a depth, and they also helped me navigate
11:53
my life in the face of symptoms.
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Third, I work at an enormously supportive workplace
11:57
at USC Law School.
12:00
This is a place that not only accommodates my needs
12:02
but actually embraces them.
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It's also a very intellectually stimulating place,
12:06
and occupying my mind with complex problems
12:09
has been my best and most powerful and most reliable
12:12
defense against my mental illness.
12:15
Even with all that — excellent treatment, wonderful family and
12:17
friends, supportive work environment —
12:20
I did not make my illness public
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until relatively late in life,
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and that's because the stigma against mental illness
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is so powerful that I didn't feel safe with people knowing.
12:29
If you hear nothing else today,
12:31
please hear this: There are not "schizophrenics."
12:34
There are people with schizophrenia, and these people
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may be your spouse, they may be your child,
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they may be your neighbor, they may be your friend,
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they may be your coworker.
12:45
So let me share some final thoughts.
12:46
We need to invest more resources into research and treatment
12:49
of mental illness.
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The better we understand these illnesses, the better
12:54
the treatments we can provide, and the better the treatments
12:56
we can provide, the more we can offer people care,
12:58
and not have to use force.
13:00
Also, we must stop criminalizing mental illness.
13:02
It's a national tragedy and scandal that the L.A. County Jail
13:05
is the biggest psychiatric facility in the United States.
13:09
American prisons and jails are filled with people who suffer
13:12
from severe mental illness, and many of them are there
13:15
because they never received adequate treatment.
13:18
I could have easily ended up there or on the streets myself.
13:20
A message to the entertainment industry and to the press:
13:23
On the whole, you've done a wonderful job fighting stigma
13:27
and prejudice of many kinds.
13:31
Please, continue to let us see characters in your movies,
13:32
your plays, your columns,
13:35
who suffer with severe mental illness.
13:38
Portray them sympathetically,
13:39
and portray them in all the richness and depth
13:41
of their experience as people and not as diagnoses.
13:44
Recently, a friend posed a question:
13:47
If there were a pill I could take
13:50
that would instantly cure me, would I take it?
13:51
The poet Rainer Maria Rilke
13:53
was offered psychoanalysis.
13:56
He declined, saying, "Don't take my devils away,
13:57
because my angels may flee too."
14:00
My psychosis, on the other hand,
14:01
is a waking nightmare in which my devils are so terrifying
14:04
that all my angels have already fled.
14:06
So would I take the pill? In an instant.
14:08
That said, I don't wish to be seen as regretting
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the life I could have had if I'd not been mentally ill,
14:15
nor am I asking anyone for their pity.
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What I rather wish to say is that the humanity we all share
14:20
is more important than the mental illness we may not.
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What those of us who suffer with mental illness want
14:25
is what everybody wants:
14:28
in the words of Sigmund Freud, "to work and to love."
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Thank you. (Applause)
14:32
(Applause)
14:35
Thank you. Thank you. You're very kind. (Applause)
14:35
Thank you. (Applause)
14:40
Translated by Morton Bast
Reviewed by Thu-Huong Ha

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About the Speaker:

Elyn Saks - Mental health law scholar
Elyn Saks asks bold questions about how society treats people with mental illness.

Why you should listen

As a law scholar and writer,  Elyn Saks speaks for the rights of mentally ill people. It's a gray area: Too often, society's first impulse is to make decisions on their behalf. But it's a slippery slope from in loco parentis to a denial of basic human rights. Saks has brilliantly argued for more autonomy -- and in many cases for a restoration of basic human dignity.

In 2007, deep into her career, she dropped a bombshell -- her autobiography, The Center Cannot Hold. In it, she reveals the depth of her own schizophrenia, now controlled by drugs and therapy. Clear-eyed and honest about her own condition, the book lent her new ammunition in the quest to protect the rights and dignity of the mentally ill.

In 2009, she was selected as a MacArthur Fellow. 

Read more on io9.com: I’m Elyn Saks and this is what it’s like to live with schizophrenia »

More profile about the speaker
Elyn Saks | Speaker | TED.com