“I am a woman with chronic schizophrenia. I have spent hundreds of days in psychiatric hospitals. I could have ended up living most of my life on a back ward, but things turned out quite differently”
Elyn Saks, was born in 1956 and grew up in Miami in the 1960s. She was an A-grade student, had a happy childhood although accompanied by episodes of obsessive behaviour and night terrors. Elyn started noticing that something was wrong when she was 16. One day, during the middle of class she got up and without telling anyone, she walked home, which was about five miles away. While walking, she felt that the houses were communicating with her, sending her messages. She thought they were putting thoughts inside her head, things like, ‘Walk, repent, you are special, you are especially bad’, and feelings of intense loathing and fear. That was her first experience of psychosis. Elyn has spent hundreds of days in psychiatric hospitals. She might have ended up spending most of her life on the back ward of a hospital, but this is not how her life turned out. She graduated as class valedictorian, she won a Marshall scholarship to study philosophy at Oxford, and today, Elyn Saks is a respected professor of law, psychology and psychiatry at the University of Southern California Law School.
In her best-selling book The Center Cannot Hold: My Journey Through Madness, Elyn reveals her journey of horrors and demons of schizophrenia through the extraordinary perspective as both expert and sufferer, now controlled by drugs and therapy. “Schizophrenia is a brain disease. Its defining feature is psychosis, or being out of touch with reality. Delusions and hallucinations are hallmarks of the illness. Delusions are fixed and false beliefs that aren’t responsive to evidence, and hallucinations are false sensory experiences. For example, when I’m psychotic I often have the delusion that I’ve killed hundreds of thousands of people with my thoughts. I sometimes have the idea that nuclear explosions are about to be set off in my brain. Occasionally, I have hallucinations, like one time I turned around and saw a man with a raised knife. Imagine having a nightmare while you’re awake. Often, speech and thinking become disorganized to the point of incoherence. Loose associations involve putting together words that may sound a lot alike but don’t make sense, and if the words get jumbled up enough, it’s called a word salad”. During her first year at Oxford, she started exhibiting symptoms indicative of depression and mild paranoia. Eventually, it developed into something more like a thought disorder than a mood disorder.
Elyn had her first hospitalization in America during her first year at Yale Law School. She asked her classmates if they were having the same experience of words jumping around the cases as she was. “I think someone’s infiltrated my copies of the cases”, she said. “We’ve got to case the joint. I don’t believe in joints, but they do hold your body together”. “Eventually I made my way back to my dorm room, and once there, I couldn’t settle down. My head was too full of noise, too full of orange trees and law memos I could not write and mass murders I knew I would be responsible for. Sitting on my bed, I rocked back and forth, moaning in fear and isolation”. The next day, she went to her professor’s office to ask for an extension on the memo assignment and began gibbering unintelligibly. He eventually brought her to the emergency room. “Once there, someone I’ll just call ‘The Doctor’ and his whole team of goons swooped down, lifted me high into the air, and slammed me down on a metal bed with such force that I saw stars. Then they strapped my legs and arms to the metal bed with thick leather straps. A sound came out of my mouth that I’d never heard before: half groan, half scream, barely human and pure terror. Then the sound came again, forced from somewhere deep inside my belly and scraping my throat raw”. This incident resulted in her involuntary hospitalization. She spent five months in a hospital ward, often restrained, up to 20 hours in mechanical restraints, arms and legs tied down with a net tied tightly across her 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. Every week in the United States, it’s been estimated that one to three people die in restraints. They strangle, they aspirate their vomit, they suffocate, they have a heart attack. It’s unclear whether using mechanical restraints is actually saving lives or costing lives”.
For a long time, Elyn lived with her struggle secretly. She shared her mental illness only with her family and closest friends. She did not make her illness public until relatively late in life “because the stigma against mental illness is so powerful that I didn’t feel safe with people knowing”. She was tired of hiding what she was thinking and feeling most of the time and tired of fearing what might happen if people discovered who she really was. So, eventually she began to think about writing her memoir The Center Cannot Hold, making public for the first time her lifelong struggle with schizophrenia, including severe episodes of psychosis as well as experiences with misguided or harmful treatments. The book was on the New York Times best-seller list, was a top ten Non-fiction Book of the year from Time Magazine and won a Books for a Better Life award. She gave a TED talk advocating compassion toward people with schizophrenia, a talk that’s been viewed over 600,000 times. A number of schools, Harvard included, hold courses for which The Center Cannot Hold is assigned. With her book, Elyn encouraged and helped her students pave their way. In 2009, she won a “genius grant” from the MacArthur Foundation for The Center Cannot Hold. With that award, she started her journey that has taken her around the country and beyond to share her experience of living with a psychotic disorder.
Despite her struggles related to her mental illness, Elyn has built a remarkable career. She is the Orrin B. Evans Professor of Law, Psychology and Psychiatry and the Behavioural Sciences at the University of Southern California Law School, nationally recognized scholar in mental health law and important advocate for the rights of mentally ill people, asking for the protection of the rights and dignity of the patient, developing solutions in the field of mental illness and changing the way society addresses issues of mental health, such as ethical dimensions of psychiatric research, use of mechanical restraints in psychiatric hospitals, the right to refuse treatment and the criminalization of mental illness, urging to stop criminalizing mental illness. “It’s a national tragedy and scandal that the L.A. County Jail is the biggest psychiatric facility in the United States. American prisons and jails are filled with people who suffer from severe mental illness, and many of them are there because they never received adequate treatment. I could have easily ended up there or on the streets myself”. There are many misconceptions about this disorder, especially what can be done to improve the quality of life for those who suffer from it. Too often, society’s first impulse is to make decisions on their behalf, denying basic human rights and dignity. “What makes life wonderful – good friends, a satisfying job, loving relationships – is just valuable for those of us who struggle with schizophrenia as for anyone else”. “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 neighbour, they may be your friend, they may be your co-worker. We need to invest more resources into research and treatment of mental illness. The better we understand these illnesses, the better the treatments we can provide, the more we can offer people care, and not have to use force”.
Moreover, she created the Saks Institute for Mental Health Law, Policy, and Ethics at the USC law school which brings together students from multiple disciplines to research and write on mental illness, where every year they choose a different theme for the Institute conferences. In 2004, she was awarded USC´s Associate´s Award for Creativity in Research, the highest honour the university bestows for scholarship. In the same year, her Refusing Care was honoured with a USC Phi Kappa Phi Faculty Recognition Award. No one has never won these two awards in a year. She served as USC Gould’s associate dean for research from 2005-2010 and also teaches at the Keck School of Medicine. She was also awarded an Honorary Doctor of Laws degree from Pepperdine University and she is an elected member of the American Law Institute.
Furthermore, she came up with many other projects such as focusing on individuals with schizophrenia who have achieved considerable professional success, a largely unexamined area. Elyn is convinced that there are more “high functioning” people with schizophrenia than is typically assumed. Although many health professionals say that people with a professional degree and a demanding job cannot have schizophrenia because people with schizophrenia cannot really do those kinds of things, Elyn Saks is the proof that they can. Indeed, she wants to dispel the myths held by many mental -health professionals that people with a significant thought disorder cannot live independently, work at challenging jobs, have true friendships, be in love relationships, lead lives of intellectual, spiritual, or emotional richness. By showing that each day doctors, lawyers, professors, and medical professionals with schizophrenia get up and go to work, she wants to give people hope.
Along with medication, psychoanalysis and plenty of solitary time, she is happily married and credits strong personal relationships and an active professional life with enabling her to keep her schizophrenia in check. More than once a day, she still experiences psychotic thoughts “but I’m usually able to say, Oh, that’s my illness and distract myself”. She notes: “Everything about this illness says I shouldn’t be here. But I am.” Her journey since writing The Center Cannot Hold has been rewarding abut also challenging, especially for the stress caused by travelling that makes her symptoms bubble up. Besides this, someone refused to have contact with her by knowing she had schizophrenia and an alumnus chided the university for hiring a mentally ill law professor.
Although conventional wisdom says psychoanalytic treatment should not work for people with psychosis, she is convinced it is helping. Since stress is particularly bad for psychiatric illnesses, Elyn has been taught to identify her stressors and avoid them. Or cope with them at the very least. She has also learned to bolster her “observing ego” — that part of her brain which allows her to step back and observe her mind, feelings, and thoughts in order to understand them and not get swept up. “Outside of medications and drugs, it’s people who can make the greatest impact. It’s so important to have a benign, smart, caring, non-judgmental person that accepts you — not only for the good — but for also the bad and the ugly. That is incredibly empowering”.
By Chiara Paganelli, WAVE Intern
Elyn Saks, The Center Cannot Hold: My Journey Through Madness, Hyperion 2008