GUY RAZ, HOST:
So what if you're not in that gray area? What if feeling crazy isn't something fleeting but the biggest part of who you are? Just ask Elyn Saks. She was diagnosed the equivalent of a life sentence at age 22.
(SOUNDBITE OF ELYN SAKS TED TALK)
ELYN SAKS: As the young woman I was in a psychiatric hospital on three different occasions for lengthy periods. At best I was expected to live in a board and care and work at menial jobs.
RAZ: Stay with us, it's the TED radio hour from NPR. I'm Guy Raz.
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RAZ: Hello Elyn.
SAKS: Is that Guy?
RAZ: Yeah, it's Guy here with the TED radio. How are you?
SAKS: Hey, great to meet you Guy. Well, thanks, how about you?
RAZ: I'm okay.
SAKS: How is it there, really cold or not too bad?
RAZ: You know what, it's freezing today. Today is the first freezing day.
RAZ: So this is Elyn Saks, she's a law professor at USC. And a few years ago she decided to do something, well, kind of crazy. She wrote a book about herself, and almost no one who knew her knew any of the things she went on to reveal in that book because she's successful and distinguished and accomplished, and she also has schizophrenia.
(SOUNDBITE OF PIANO MUSIC)
RAZ: Here's how she described it in her TED talk.
SAKS: As young woman I was in a psychiatric hospital on three different occasions for lengthy periods. My doctors diagnosed me with chronic schizophrenia and gave me a prognosis of quote, grave. That is, at best I was expected to live in a board and care and work at menial jobs. Fortunately, I did not actually enact that grave prognosis. Instead, I'm a Chair Professor of Law Psychology and Psychiatry at the USC's School of Law. I have many close friends and I have a beloved husband, Will, who's here with us today.
(APPLAUSE)
SAKS: Thank you.
(APPLAUSE)
SAKS: He's definitely the star of my show. I'd like to share with you how that happened and also describe my experience of being psychotic.
SAKS: I'd like to say actually that an episode of schizophrenia is like a waking nightmare where you have all the bizarre images, frightening things happening. That's what it feels like, the terror, the confusion, impossible bizarre happenings that don't happen in real life but seem to be happening — happening right now. Only with a nightmare you sit up in bed and open up your eyes and it goes away. And you can't just open your eyes and make a psychotic episode go away.
RAZ: Can you describe one of your psychotic episodes?
SAKS: Yeah, you know, it started off looking like --
RAZ: So a bit of background here. Elyn had just graduated from Yale Law school — this was the early 1980's — and her therapist who basically helped her get through her psychotic episodes, Elyn calls him Dr. White in her talk, he decided to shut down his practice.
SAKS: I expected to leave New Haven in about two and a half years and he suddenly announced that he was closing his practice in three months. I had made it through Yale Law school and had my first law job as a result of working with him, and I was very attached and very dependent and I just fell apart.
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SAKS: And my closest friend Steve flew out to be with me in this difficult time.
STEVE BENHKE: So I got a call and I decided that I would go back to New Haven immediately.
RAZ: That's Steve, Steve Benhke.
BENHKE: And at that time Elyn was living in an apartment close to the Yale campus, and I remember just getting out of my car and walking in the building and wondering what I would see when Elyn opened the door. And I had been on the back wards of, at that point, a number of psychiatric hospitals and nothing had prepared me for how badly Elyn was doing at that time.
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RAZ: What did she look like?
BENHKE: Elyn looked exhausted, gaunt.
SAKS: I stopped leaving my apartment.
BENHKE: The room was pitch black.
SAKS: Shades were all drawn.
BENHKE: She could barely speak.
SAKS: Wasn't bathing.
BENHKE: It smelled.
SAKS: Had a lot of thoughts, delusions, and hallucinations that I killed hundreds of thousands of people with my thoughts or a nuclear explosion was being set off in my brain.
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BENHKE: So Elyn opened the door. She said hi, and she turned around and began a very slow walk back to her couch, which was maybe 10 feet away. And I just followed her into the room and sat on the couch with her in silence for a very long time.
SAKS: Time, time, time.
BENHKE: Elyn kept repeating those words.
SAKS: I started saying things about time, word, clock, voices. Time is, time has come. Time is, time has come. Tell the clocks to stop. Time is, time has come. Time is, time has come. Tell clocks to stop.
RAZ: And then, Steve?
BENHKE: I said something like, White is leaving. Dr. White is leaving.
SAKS: At that point he said...
BENHKE: And then there was another very long silence.
RAZ: Silence, for hours. They just sat there in silence. And then they took a walk, a little walk around New Haven just some fresh air, and eventually the psychotic episode it was over.
SAKS: And things got better.
RAZ: And a few days later, Elyn's therapist, Dr. White, he changed his mind, he would stay. But the psychotic episodes also stayed and Elyn would go on to spend days, sometimes hundreds of days, in mental hospitals mostly against her will. Now, it took many, many years before she was able to get it under control with almost daily therapy and heavy medication. But what makes Elyn's story so amazing is who she became despite what she lives with. I mean Steve — you knew — I know who Elyn was. I mean, she'd been a marshal scholar and a gifted law student and yet she had this debilitating illness. Did you think that she would make it? Did you think that, you know, 30 plus years on we would be sitting here talking to one of the most distinguished law professors at USC?
SAKS: Thank you. That's actually an interesting question. What's the answer, Steve?
BENHKE: I never had a moment's doubt, Elyn, that you were going to make it.
SAKS: Really?
BENHKE: Never.
SAKS: How come?
BENHKE: Well, you have a life force about you that I just watched, and you would get feedback from professors that you were brilliant. So, it was always very clear to me that you had the intelligence to do anything that you wanted to do, and I knew that you had the will...
SAKS: Yeah.
BENHKE: ...as well. And I think the combination of the two has made a wonderful life for you.
SAKS: Yeah.
RAZ: Elyn, in your TED talk you describe the medication that you're on and also how you resisted taking them for a long time.
SAKS: Yeah, you know, people resist for various reasons. One being they don't like the side effect. They feel like they're not themselves. For me, and I think for a lot of people, the problem was, the quote what we call in the business, the narcissistic injury of having a mental illness. I didn't want to believe that was true. The way I could prove that it wasn't true was getting off medication and doing well. I used to say, I don't want to use a crutch. I now say, if my foot were broken, I'd use a crutch. Aren't my neurotransmitters entitled to as gentle treatment as a broken foot? So I've kind of reframed, you know, what medication is and does for me. I think it makes me, it restores me back to my normal, true, authentic self instead of changing me into something I'm not.
RAZ: Do you still have psychotic thoughts?
SAKS: Occasionally, yeah. Will, my husband, likes to say psychosis is not like an on-off switch but like a dimmer. So at the far end I'll have a transient thought. Down toward the middle, you know, say we'll have houseguests, which I love but is also hard for me, and I may have two or three days where I'm in and out of psychotic thinking. And then at the far end, you know, I'm crouching in a corner shaking for weeks, which hasn't happened in more than a decade. So I do have symptoms but they're farther apart, they're less intense, and they're less long-lasting than they used to be. Which is to say for the most part, I'm pretty clear and I love it how I feel. And I recognize that other people are like this and that I was really just confused about reality.
RAZ: It's amazing because we celebrate and venerate athletes and other public figures who overcome cancer and other diseases.
SAKS: Right, right.
RAZ: But we don't really talk about people who overcome mental illness.
BENHKE: Yeah. Well, and I think much of what surrounds mental illness is keeping it a secret from people.
RAZ: Yeah, yeah.
BENHKE: And it is a terrible burden on top of a terrible burden.?
SAKS: Keeping a secret kind of puts a wedge between you and new people. I have to say though, that the response I've gotten has been overwhelmingly positive and supportive.
BENHKE: You know, Elyn, that's wonderful, but also remember that response came after people knew what you had accomplished.
SAKS: That's good point. That's a good point.
BENHKE: But, you know, it's the adage, that truth shall set you free, right? And you have nothing to hide.
SAKS: Yeah.
BENHKE: It must feel pretty good.
SAKS: It feels great. I will say I have some things still to hide.
(LAUGHTER)
SAKS: Everybody has something to hide.
(SOUNDBITE OF ELYN SAKS TED TALK)
SAKS: At times I spent up to 20 hours in mechanical restraints. Arms tied. Arms and legs tied down. Arms and legs tied down with a net tied tightly across my chest. I never struck anyone. I never harmed anyone. I never made any direct threats. If you've never been restrained yourself, you may have a benign image of the experience. There's nothing benign about it. While I was preparing to write my student note for the Yale Law journal on mechanical restraints, I consulted an eminent law professor was also a psychiatrist and said surely he would agree that restraints must be degrading, painful, and frightening.
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SAKS: He looked at me in a knowing way and said, Elyn you don't really understand. These people are psychotic. They're different from me and you, they wouldn't experience restraints as we would. I didn't have the courage to tell him in that moment that no we're not that different from him. We don't like to be strapped down to a bed and left to suffer for hours anymore than he would. In fact, until very recently, and I'm sure some people still hold it as a view that restraints help psychiatric patients feel safe. I have never met a psychiatric patient who agreed with that view.
Today, I'd like to say, I'm very pro-psychiatry but very anti-force. I don't think force is effective as treatment and I think using force is a terrible thing to do to another person with a terrible illness. Everything about this illness says I shouldn't be here. But I am, and I am I think for three reasons.
First, I've had excellent treatment, four to five-day a week psychoanalytic-psychotherapy for decades and continuing in excellent psychopharmacology.
Second, I work at an enormously supportively work place at USC Law school. This is a place that not only accommodates my needs, but actually embraces them. It's also a very intellectually stimulating place and occupying my mind with complex problems has been my best and most powerful and most reliable defense against my mental illness.
Third, I have many close family members and friends who know me and know my illness. These relationships have given my life a meaning and a depth, and they also help me navigate my life in the face of symptoms. Even with all that, excellent treatment, wonderful family and friends, supported work environment, I did not make my illness public until relatively late in life. And that is because the stigma against mental illness is so powerful that I didn't feel safe with people knowing.
If you hear nothing else today, please hear this. There are not schizophrenics. There are people with schizophrenia and these people may be your spouse, they may be your child, they may be your neighbor, they may be your friend, they may be your coworker.
Recently, a friend posed a question. If there were a pill I could take that would instantly cure me, would I take it? The poet Rainer Maria Rilke was offered psychoanalysis. He declines it saying, don't take my devils away because my angels may flee too. My psychosis, on the other hand, is a waking nightmare in which my devils are so terrifying that all my angels have already fled. So would I take the pill? In an instant. That said, I don't wish to be seen as regretting the life I could have had if I'd not been mentally ill, nor am I asking anyone for their pity. What I rather wish to say is that the humanity we all share is more important than the mental illness we may not. What those of us who suffer with mental illness want is what everybody wants. In the words of Sigmund Freud, "to work and to love." Thank you.
(APPLAUSE)
RAZ: Elyn Saks, she's written a book about living with her illness. It's called, "The Center Cannot Hold." Her husband helped her proofread the chapters.
(SOUNDBITE OF ELYN SAKS TED TALK)
SAKS: There's another thing I said when I was trying to get off medication my last time, I said, you know, you're trying to put me in the hospital, ha ha ha — ha ha ha. Hospitals are bad, they're mad, they're sad. One must stay away. I'm God or I used to be. At that point in the text when I said, I'm God or I used to be, my husband made a marginal note. He said, Did you quit or were you fired?
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