One day, when she was 16, Elyn Saks abruptly got up from her desk, walked out of her classroom and left school. She headed home, but she could not explain to herself why. As she passed the houses in her neighborhood, the houses spoke to her – insulting, hostile words that reverberated in her brain.
It was Saks’ first experience with psychosis and living with schizophrenia. She continued to experience intense delusions, and during her first semester attending Yale Law School, Saks was hospitalized and restrained to a hospital bed for the first time. A few years later, while at Oxford University, she experienced a complete psychotic breakdown. Another decade would pass until Saks could manage her illness with the proper medication and therapy.
Schizophrenia is a psychotic disorder chiefly characterized by the inability to discern reality from delusions and hallucinations. Less than one percent of people live with schizophrenia, and it is one of the most misunderstood and stigmatized of mental illnesses.
Saks has dedicated her career to advocate for people with severe mental illnesses; she argues that, with the right medical resources and support networks, they can live with increased independence, dignity and happiness.
Saks is now a lawyer and the Orrin B. Evans Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California’s Gould School of Law as well as the founding director of the Saks Institute for Mental Health Law, Policy and Ethics. She also holds positions at the University of California, San Diego, the New Center for Psychoanalysis and the Keck School of Medicine.
Her academic and legal writing focuses on the intersection of law and mental health, but in her memoir, “The Center Cannot Hold: My Journey Through Madness,” she recounts her personal struggle living with schizophrenia and how she learned to live the life she wanted to live. A TED talk she gave in 2012 about living with the illness has been viewed more than 3 million times.
Despite her many academic and scholarly accomplishments, she considers avoiding hospitalization for three decades her proudest accomplishment.
Saks will give the keynote speech at the Oregon Law & Mental Health Conference in Portland, June 16. The conference is a project of the Mental Health Association of Portland, an all-volunteer, nonprofit organization supporting recovery from mental illness and addiction.
Amanda Waldroupe: In your TED talk, you said that the schizophrenic mind is “not split, but shattered.” What do you mean by that?
Elyn Saks: Some people think that people with schizophrenia have different personalities, given the word “schizo,” which means different personalities. They confuse schizophrenia with Multiple Personality Disorder, which is now called Dissociative Identity Disorder. You’re split into different parts or different personas. With schizophrenia, you’re confused and disordered. It’s as if your mind is falling apart.
AW: How can that sense of confusion and disorder manifest itself, day to day?
ES: When one is symptomatic, you would be having typically delusional thoughts, like ‘I’ve killed people with my thoughts,’ or hallucinations. Once, I saw a woman at the foot of my bed. You make word salads – words that are loosely associated with one another. When I was at Yale Law School, I said, “I think someone’s infiltrated my copies of the cases. We’ve got to case the joint. I don’t believe in joints, but they do hold your body together.’”
The best analogy I can give of an active psychotic episode is a waking nightmare, with the confusion and terror. When you have a nightmare, you can sit up in bed and it goes away. There’s no such luck with a psychotic episode.
AW: Many of the symptoms you describe, such as making word salads or having delusional thoughts, must be so confusing and scary. What cumulative effect do these symptoms have on a person living with mental illness over time?
ES: It depends on how compliant you are on medication. Some people stay psychotic for the rest of their life. My husband likes to say that psychosis is not an on-off switch, but a dimmer switch. A lot of the time, I’m able to say to myself, “Oh Elyn, that’s just your illness, pay it no mind.” I might have two or three days going in and out of psychosis. And at the far end (of experiencing severe psychosis), I’ll be crouching in a corner and shaking. There are different degrees in which it manifests itself. But for me, for many years, things have gone in the right direction.
AW: It must have taken an incredible amount of work and dedication to be able to manage the illness, and talk about it, the way that you do.
ES: It doesn’t feel that way. I’ve had the illness a long time. I’ve talked about it. I’ve written a memoir. At this point in my life, it seems pretty easy, something for which I’m enormously grateful.
AW: In another interview you said, “everyone becomes psychotic in his or her own way.” What do you mean by that? And how does the individualistic nature of these illnesses impact the ability to provide good medical care?
ES: To diagnose, you have to have certain kinds of symptoms. They vary. People have delusions, some people have hallucinations. Some people become apathetic and stop working or interacting with people. There are people who become catatonic. That doesn’t happen with the drugs that we have now.
AW: You think people with severe mental illness like schizophrenia can live with more independence than many already do. So much of treatment, though, is focused on things like medication and hospitalizations. Is it individual enough?
ES: Some people think that I’m unique. They say there aren’t people like me who are as high functioning. That’s not true. It’s just that the stigma is so great that people (with illness) don’t come forward. I think it’s a mistake when doctors tell patients with schizophrenia to lower their expectations. I was told to get a job as cashier at a store. I thought to myself, I’m a student. I’m good at it. I like it. If I’m down for a few days, I can make (the work) up. What was more stressful to me is the idea of a constant line of people asking for change.
AW: How can it help for a doctor, who is supposed to provide medical care so that you get better, discourage you from doing something that you enjoy and are good at?
ES: Prejudice drives it. I think back to my law school journal article on mechanical restraints. I was talking with my professor, who was also a psychiatrist. I was telling him that restraints are so painful and humiliating. He said, “Elyn, you don’t understand, these people are psychotic.” They don’t expect someone with psychosis to be as high-functioning. And I say, “No, we are not different from you.”
If you make someone an “other,” you can do things to them that you would not do to yourself or your family member or whomever. My closest friend and I had a client in Connecticut Valley Hospital and she stopped speaking. She didn’t think that people wanted to talk to her, she wouldn’t talk to staff or patients. Totally mute. But we talked to her every month on the phone. We knew she could speak. One day, she was overheard talking about her legal rights by the medical staff, who thought that she was talking with imaginary lawyers.
AW: The doctors never even considered the possibility that she could be talking to real people.
ES: I had an experience like that when I was going to do a radio interview. I was wearing headphones and there was a microphone in front of me. They said, “say a sentence, Elyn, so we can get your voice.” And I told them, “I’m hearing other people on these headphones.” They said, “We don’t hear anyone.” They thought I was hallucinating.
AW: In any other situation, they would have thought there was some sort of problem with the audio equipment.
ES: Right, exactly.
AW: So what do you think needs to happen in medical environments to reduce that stigma?
ES: It needs to happen in society generally. People coming to see mental health disorders as brain disorders doesn’t reduce stigma, but putting a human face on it does. People coming forward is what is going to reduce stigma. More people are doing that. The (Americans with Disabilities Act) helps. You may know that the person in the office next to you is getting accommodations, and you may see that they’re like you. They value the things you value. They want friends. They want romantic relationships. And so on.
AW: When you talked about sharing stories, I immediately thought of the media. How can journalism better report on stories related to mental illness and break down some of those preconceptions?
ES: Media is an incredibly powerful way to do that. And not just journalism, but TV and movies. That’s where people get most of their information. The information can be portrayed in a careful, sympathetic, and accurate manner. Or it can be sensationalized by focusing on violent crime, when the reality is that people with mental health disorders are not more likely to commit crimes.
One question that I get a lot is how did I manage to do well given such a grave prognosis. I want to list the things in the hope that other people can take advantage. One is excellent treatment, both pharmacological and intensive psychotherapy. (When it comes to therapy), I’m a lifer. I don’t want to risk ending it. Second, I have wonderfully supportive friends and family. That gives my life a sense of depth. And I also have a great work environment that is intellectually stimulating and accommodating. When I’m writing an argument or counter-argument, the psychotic thoughts recede to the sideline. I’ve come to think that my mind is my best friend and my worst enemy. It gives me abilities and motivations and pleasure from using those abilities.
Courtesy of Street Roots / INSP.ngo
