August 08, 2007

Interviews with Elyn Saks, author of "The Center Cannot Hold,"

We've had many positive messages from people who were appreciative of this week's story of Elyn Saks who is a professor at the University of Southern California, and has recently published an autobiography on her recovery process from schizophrenia. In fact we're in contact with the publisher and we'll be interviewing Elyn ourselves in the next week or two - and we'd love to get questions from you that you'd like for us to ask her - just post them in the comments section of this page at the bottom and we'll try to get her response.

Following is an excerpt from an excellent interview with Elyn that was broadcast yesterday, and then at the bottom of the page there is a link to the NPR web site where you can listen to the entire interview (which we encourage you do). Also below is another interview that is published in Newsweek magazine.

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August 7, 2007 Tuesday, NPR Fresh Air

Elyn Saks, author of The Center Cannot Hold on living with schizophrenia

"Schizophrenia," Elyn Saks writes, "rolls in like a fog, becoming imperceptibly thicker as time goes on." Saks is a professor of law, psychology and psychiatry and the behavioral sciences, and she's written widely on mental health and the law. But her knowledge of schizophrenia is deep and personal. Though many of her colleagues and students are just now learning it, Saks herself suffers from the disease. It emerged when she was in college and strengthened in graduate school. She suffered serious episodes of delusions and paranoia, at times mumbling to herself in hallways and forgetting to eat and bathe. Remarkably, despite several hospitalizations, Saks managed to graduate as class valedictorian at Vanderbilt and complete studies at Oxford and Yale law school. She's told her story in a new memoir. It's called "The Center Cannot Hold: My Journey Through Madness."

Well, Elyn Saks, welcome to FRESH AIR. Schizophrenia typically presents itself, I guess, in early adulthood, I guess, often a little earlier with men than women.

As you reflect on your childhood...are there moments that you think might have been early manifestations of your illness?

Ms. SAKS: You know, I had a bunch of symptoms when I was growing up. I think a lot of them were within normal limits. You know, I was fearful. I had some phobias. I had some obsessions. I had some kind of intense fears that, in retrospect, might have been a kind of beginning of the almost poking through, but the first real clear sign of it was when I was 15 or 16, and I was sort of walking home from school precipitously. I left, I just suddenly got up and walked home, and I felt as if the houses were sending me messages and getting all weird and frightening, and I was terrified. So that was kind of the first episode, but I brought it to an end fairly quickly, and it didn't come back in that kind of florid form until I went to Oxford as a graduate student.

DAVIES: What did you make of it at the time?

Ms. SAKS: I didn't know what to make of it. It was just something that happened to me. It was weird. I was worried about it. In retrospect, I wish I would have, you know, gotten some good treatment at the time. My parents were very good parents and very kind and caring parents, but I don't think they really understood that I needed treatment for the things that I was experiencing. Who knows if it would have made a difference, but maybe it would have.

DAVIES: You know, the interesting thing, of course, is that one of the problems with schizophrenia is that when people begin to get ill, they don't realize they're getting ill...They think they're understanding reality as it is. ...when in fact it's quite distorted, and I'm wondering if your ability to remember your previous episodes was ever a tool that you could say, `Wait a minute. I recognize.....`this thought pattern. This is what I do when I get sick.'

Ms. SAKS: Oh, absolutely. Absolutely. I mean, you know, a psychosis is not like an on-off button but a kind of a dimmer switch; it ranges in degrees of intensity. And by this time I know my illness fairly well and it's not uncommon for me to have a kind of transient psychotic thought and say, `Oh, that's just my illness acting up.' And one thing that's stood me in good stead is, even when it gets worse, when I am really, really believing the crazy things, I always know that other people will think they're crazy, and I'm motivated to not appear crazy so I'm able to kind of make my way in the world in that way. And then occasions where it's just so intense and so profound, I just know not to be around people. Because I, you know, I don't know what I'll say. So for the most part I can control what I say even though I really can't control what I think.

DAVIES: USC professor of law and psychology Elyn Saks. Many of her colleagues will learn more of her illness when she speaks at the American Psychological Association Convention in San Francisco later this month. Her memoir is called "The Center Cannot Hold: My Journey Through Madness."

Listen to the Full Interview:
Elyn Saks Interview

In the Newsweek interview they mention:

Newsweek: It’s clear from your book you not only had good health care but friends and family who were adept at managing and coping with your psychosis. Many people with schizophrenia aren’t as lucky, right?

Elyn Saks:

I say most of my success has been due to luck—to have supportive family and friends, to respond to medication and to have the resources to get proper care. There are a lot of people who have schizophrenia and bipolar disorder who do not have resources and can’t get help. Mine is a story of someone who did well with good treatment. One of the tragedies of our system is that most people don’t get the kind of help they need and if they got treatment, they could be much happier and higher-functioning.


Newsweek Interview with Elyn Saks:
Waking Nightmares

Another Interview:

Interview: Professor Elyn Saks Discusses Memoir, Battle with Schizophrenia

You can order the book on Amazon.com at the following link: The Center Cannot Hold: My Journey Through Madness


Comments

I have a Question....Are you on A low maintenance dose of medication and do you vary it, taking more as needed ... do you have the insight to control your own medication needs.

Posted by: Salty Davis at August 8, 2007 02:29 PM

I think Ms. SAKS was kind of lucky. Her symptoms seem not that serious and inflexible. I want to ask her did she ever try to keep her illness to her friends or colleagues? And did she ever worried about people's attitude more than her illness itself?

Posted by: Hao at August 8, 2007 06:58 PM

Just like Elyn Saks atypical antipsychotics work better for me and I'm intelligent and disciplined and have a high level of functioning for a schizophrenic. Though I am still jobless and she is a law professor.

My question is How did she do this? Maintain a steady job. How does she manage the stresses this brings?
How exactly does the schedule that she depends on look?
And then, I tend to think of relatives and friends more as a burdon. What's makes that she gets so much help and energy from her friends and partner?

freeZotic from the Netherlands

Posted by: freeZotic at August 9, 2007 02:47 AM

All I can say re the comment 'How does she do it?' is it can be done. To all of you fellow schizophrenics out there, don't give up. Take your medication, because when you don't that is like giving up. I am an ex federal officer and was very good at what I did. I had a breakdown and a hospitalization at age 19; at age 32, I was stopping terrorists from coming to the USA. I am on leave from my work right now as a result of my illness last summer when my doctor said it was okay for me to go off my medicine because I was doing so well. I had been with him for twelve years, and even he forgot there was no cure. Exercise lots, eat vitamins, drink lots of water, eat lots of fruits, stay away from illegal drugs and also alchohol and consider Omega-3's. There are schizophrenic professors, schizophrenic football players, schizophrenic cops (at least 1) and in the future maybe schizophrenic soldiers. Think of life as war, as if you were a soldier in the army. Your doctor in the medical service corps tells you to take your medicine, so do it. Even on our medicine, some of us kick ass, right?

Posted by: hmmned at August 10, 2007 10:19 AM

My question is how to handle the stigma that surrounds an illness like this. The passage you wrote about studying with those two kids in I think Law School you made it sound like they were really scared. I would be so ashamed when I came to reality and it would be hard for me to face them? I don't think I could face them. Didn't they do a lot of whispering behind your back when all that happened. How do you handle that and make yourself go on. I don't have the illness to a large degree, relatively minor (so far), and I am just coming to realize and accept that I have an illness but coming to accept that also means coming to accept the social stigma that is out there concerning the illness. I feel like a gay person in the closet is kind of how I feel. Of course I live in the suburbs in the midwest which doesn't help. Thanks!

Posted by: Lola at August 12, 2007 09:29 AM

come out of the closet lola and use your illness as an asset!

Posted by: Brian G at August 12, 2007 04:04 PM

I have a few questions:

As a mentor to persons with mental illness, what advice can you pass on?

Do you plan to have children?

How do you stay attached to friends and family when the illness comes on?

Should I keep my illness a secret?

How has sharing your story changed your life?

Posted by: Sunny G at August 16, 2007 07:54 AM

Elyn's book is well done and detailed. She speaks of her culture and builds on it.

Most people who have this disorder have drifted down in class and live off disability some for the rest of their lifetime.

Posted by: Jeff Dyer at August 21, 2007 01:04 PM

The metaphor of "Life is a War." Is my example of a complete success in this realm of reality.

Let's go kick some booty!

Posted by: J. D. at August 21, 2007 02:02 PM

and even he forgot there was no cure...

There is recovery and there is cure. Recovery will vary by self-definition. For some people, recovery means maintaining a job or a stable relationship. For others, recovery might mean finding a form of medication that works for them or perhaps getting off meds entirely. Recovery has many faces and in some cases, it's apparent that recovery is complete.

... when we talk about subjects who are recovered, we're talking about no medications, no symptoms, being able to work, relating to other people well, living in the community, and behaving in a way that you would never know that they had had a serious psychiatric disorder.

-- Dr. Courtenay Harding

~~~~~~~~

It should be emphasized that recovery varies according to culture, setting, and individual. Many, many people recover including those who were seriously ill and had the worst prognosis.

Dr. Harding’s data are all the more powerful because she was studying the bottom 19% in the functional hierarchy in a large state hospital. Some of the people in her study had regressed to speaking in animal like sounds. Most had been in the institution for 10 or so years, many had been in and out repeatedly. The cohort is the least functional ever studied in world literature on schizophrenia. Nevertheless, of this bottom 19%, 62% to 68% fully recovered or significantly improved.

-- Dr. Edward Knight

Personal accounts such as Elyn Saks are important because they present one of the many faces of recovery and give people hope. Without hope, people give up or give in.

For more information on just how promising the hope of recovery is, try here: Schizophrenia & Hope.

For more personal accounts and stories of recovery, try here: Voices of Recovery

Posted by: spiritual_emergency at August 23, 2007 04:33 AM

My question for Dr. Saks is this: I have written a book about my family history of mental illness with particular focus on my sister's experiences with schizophrenia. She knows I've written the book but she probably can't read it. What are the ethical considerations in terms of publishing her story? I had planned to change the names in the book, but it is still her personal story. I don't want to hurt my sister but I want others to understand this disease and its effect upon the person and his/her family.

Posted by: Julie Klomp at August 24, 2007 09:25 AM

I just heard Professor Saks' presentation at the APA convention in San Francisco last Sunday. She received a long standing ovation from an audience of several hundred psychologists. What a joy it was to have been there to see a person with schizophrenia received with such enthusiasm. I look forward to reading her book.
All the best,
Fred Frese, Ph.D.

Posted by: Fred Frese, Ph.D. at August 27, 2007 05:40 AM

Thank you so much for "The Center Cannot Hold." My son has lived with his tormentors for all of 35 years. I wish he could have had your opportunities for treatment. My only criticism is that so many of our mentally ill have little or no recourse to proper or adequate treatment, certainly not with daily or even weekly visits to a qualified physician who can spend more than ten minutes with them.

Posted by: Jeane Davidson at August 27, 2007 12:23 PM

Recent data suggest that the relapse rate for patients with schizophrenia is lower than previously thought (e.g. see the SOHO study). Do you think the public needs to better understand that schizophrenia can be effectively treated in many cases and that people with schizophrenia should be considered as having the potential to be well functioning, contributing members to society.

Posted by: Tami Mark at August 29, 2007 04:21 PM

I'm struck by Saks' profound devotion to her psychoanalysts, because from her own story it seems obvious that she became fully functional mentally, emotionally, and intellectually thanks to the psychiatrist who insisted she take medication. While I know that talk therapy for any of the mental illnesses is both helpful and necessary, I also can't help but wonder how Saks' life might have gone if she'd had a doctor in her 20's who was able to work on her early fixation on drugs as bad (and her own denial of her illness), and get her on meds. Her description of her years in Oxford--despite the acquisition of a prestigious degree--don't sound like good, healthy, or happy years, and to me weakened her self-esteem and sense of self--this, in spite of Saks' insistence on the helpfulness of being able to be her worst self in front of Mrs. Jones.

Posted by: M. Samuelson at August 31, 2007 01:38 PM

Thanks to Professor Saks for her memoir. It's interesting and helpful. I wonder what she would advise family and friends on how to relate to a person with schizophrenia. I note the professionals were able to give perfectly sane replies to whatever bizarre thoughts were expressed. How can a family member or a friend maintain sufficient detachment to relate consistently in a calm and sane way when some of the things being verbalized are experienced as hatred and abuse.

Posted by: Numa at September 21, 2007 03:34 AM

Hi, I'm 41 years old and came to the realization of being label paranoid schifrenia when I was 32. As you all know, I had people saying bad things to me
like a New Yorker would for no reason. I also felt weird in my body and was confused. People in my office told me they were going to kill me. I fired them all and quit myself. I heard them harrassng me over the radio speakers, in the
house, on the phone, and even outside walking or swimming or biking. I tried to get the harrassers on tape and cleverly hid my recorder in my bible.

I then took it a friend who was a sound engineer and they couldn't make heads
or tails of it. It was like I alone could understand it. Very sad for me.

I thought I was being doped by people pouring ecstasy into my open bottles at
home. If I drank from a sealed lid, I'd be fine, but if the lid was open, i felt ectesay. This is horrible for a law abiding citizen who is running a consulting branch for a reputible firm. It took a while but in my dazed and confused actions, I eventually fired every one thinking they were the culprit.

I then rad to Utah and climbed mountains but could still hear the harrassers.

It was horrible. I was soo frighted. I begged the to let me live to 33 so I could die the same as jesus. Yes i'm a jesus nut. This was my first encouter
with schizophrenia.

Things died down while i was taking 3 mg of risperdol. and after some time came
down to 1 mg of risperdal. I still was failing at jobs as I very slow to do anything, and anything took extra effort, more than a normal body should take.

I kicked in my tenacity and hoped for the best, but 5 layoffs later and I was beginning to see the picture. I decided to start up and insurance job and met a great young man. We started dating and I told him I was a schizophrenic and
he seemed ok with it. He did have a lot walls up though that I had to bash thorugh. Because of me and because his divorce hurt him a lot. We went scuba divinhg in the Carribean and all seemed to go well. we dated for 3 years and than I asked him to marry me! He was happily surprised and said yes. I was on clous nine, during the engagement and marriage I was not being harrassed so that coupled with the best thing in my life to happen, I was on cloud nine.
We have been married for 1.8 years and it has been bumpy. I guess you can pick how you want to be harrassed. Maybe there way saving face. "Well she picked one:LIke we had a choice. I picked pain as pleasure always got me into trouble. Through the pain I was diagnosed with fibroid Malaysia, Thank God. My family respected me once again. I really kept inside and teated them well even through tough talks and ommitting things to our 10 and 12 year old girls. But
once I could say my fibroid myalsia is acting up I have to sit down. The girls pitched in more and my die hard husband saw me in a new light. I was not a woose anymore. Yeah. Since February of this year my full time job I have had for 3 years was reduced to keep me on because of all the pain, headaches, mental anguish, and physical maladays they place upon us. Everymorning I wake up, pull myself out bed even though it feels like it still needs more healing and limp around a while with a stomache ache, head ache, fibrois malaysia acting up or whatever. And finally get ready to go to work. I make it there and
it starts again, tummy ached to the point i'm keeled over at my desk in agony. I must wait for the feelig to pass or become easier to handle so I can get to my computer and do my job. I have a notebookd with a play by play on my physical anguish should I need it if I'm fired and need to go ont social security. /but the way I feel, they've been doing this to me 17. something years and it's time to stop. Argument 1, what if there is no god, then I missed out on half of my life.//? Growing up is really hard but no ones fault, but would you want to go back? Not me ever pleae. Then there is College. I was being harrassed in college but did not know and did have some fun. They made me carve under my arms in college. I though that was the end but when I turned 26 it got worse. They had key notes or phrases I could hear best through television and radio which would make me very offended and I would have to get up and leave my date and run outside usually crying. Awful Awful Awful. I lost him by the way. Good guy too. When I left him i promised myself I would change and never do that again. (It is a trick on how to live with yourself when you've
done something in your eyes that was unforgivable) -- Since then I though I was growing and I met this really cool sound engineer in chicago and we started datingk, We were serious fast and got engaged fast. But then I woulod hear things he said on the phone which would lead me to believe all sorts of things about him that were untrue. I had not learned zen yet or give someone the benefit of the doubt yet. So I ran out on him. my second fiancee came to live with me in Skokie Illinois for a time. I was having pressure from work where people were saying they were going to kill me and spiking drinks with ectasy.
I had to leave. John and I split up and I joined the army. Things seemed to
get better but i still had voices i could hear that no one else could. I got
through basic training and qualified for Officer Training school. After some
months I decided hear voices was probably not sane and i should get them checked out. They were very nice at the clinic and diagnosed my paranoid schizophrenic. When I got out, thinjgs seemed to die down for me for a few years. During this time I was taking meds for the disease and not doing well at
work becaue my motory functions and brain power were effected. I lost 5 jobs until I found PDS in Bloomington. I have a great boss who knows everythig and that i'm honest with. I was able to go full time fo 2.5 years ish but now part time as this time they're after me with a vengence.I'm a very devout christian who tries to walk in Jesus footsteps to the best of my ability no matter what happens, but that keeps you on your toes depending what the harrassers do or say. Recently I decided I do not have to be 10o% jesus. That I'm human and need to relate to the harrassers on their level.This latest attack has been going on since feb-2007 til today sept 2007. I am asking benevolent beings to monitor those who do this and if asked by the rate to be put to slip instead of hearing and feeling the pain by these ETs to just do it. Kill me in bed I have been begging of somoen. I don't want to see it coming, but I can not live another moment know tomorrow I have to climb up the mountain of glass to find the cheese I nheed to support my family, clothes my family, and retire.
I hope this helps. Good luck to all of you. If you are near me I'd love to talkj
A]

Posted by: Brenda Troth at September 24, 2007 09:08 PM

Hello Elyn:

I absolutely love your book. It has inspired me in ways that you can only imagine. I am professional who works at a Community Mental Health Board in Michigan who is currently developing a Recovery Center of Excellence for our State. I would be honored if you would be willing to speak at our first conference to be held next year. We would work it around your schedule. Your story will inspire all individuals who are in the process of recovery from mental illness, and those who provide support. You offer Hope, such a rare commodity these days. Thank you.

Posted by: Carol Wallace at September 30, 2007 07:41 AM

I haven't read the book of dr. E. Saks, translated already in dutch language (I'm dutch, born in '52, but living in Italy since '72). I like to read the norwegian story of complete recovery of Arnhild Lauveng, already translated in Holland and Poland. I myself have been a paranoid schizofrenic with a very great delirium from '95 until 1999. Since 3-4 days after my placing in hospital I didn't hear the voices any more and since already 5 1/2 years I don't take psychofarmaca ANY MORE. I followed a personal spoken psychotherapy for several years and my personal recover story will be published in Italy an Holland within 2008.
My question is: how can Dr. Saks deal/work like a psychologist while she's not completely recovered and didn't - it seems so - clear for herself what where the reasons of her being a paranoid schizofrenic person???

Posted by: Lia at November 7, 2007 09:18 AM

dear Brenda Troth, please don't give up, my wife has had schizophrenia for 18 years and we are hanging in there so please keep MOVING FORWARD, you are in my prayers, love gary

Posted by: gary green at February 10, 2008 02:10 AM

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