Most of us have never had to live inside our heads as all hell is breaking loose.
We've never faced the terror of falling apart, of totally losing our grip on reality. We've never experienced the horror of hearing strange voices tell us to do terrible things. Most of us, in other words, have never had schizophrenia, one of the most common and most severe forms of mental illness.
Elyn Saks has.
In her gripping new book, "The Center Cannot Hold," an insightful look inside the mind of a person with schizophrenia, she describes her many traumatic experiences.
In one of the earliest episodes, a quarter-century ago, she's in the emergency room of a major academic medical center, in the midst of a breakdown. The doctor "and his whole team of ER goons swoop down, grab me, lift me high out of the chair, and slam me down on a nearby bed with such force I see stars. Then they bind both my legs and both my arms to the metal bed with thick leather straps.
"A sound comes out of me that I've never heard before - half-groan, half-scream, marginally human, and all terror. Then the sound comes out of me again, forced from somewhere deep inside my belly and scraping my throat raw. Moments later, I'm choking and gagging on some kind of bitter liquid that I try to lock my teeth against but cannot. They make me swallow it. They make me . . . I am finally powerless."
You would never suspect, reading that and the other remarkable stories she tells, that Saks graduated first in her class from Vanderbilt University. That she won a Marshall Scholarship to Oxford. That at Yale Law School, she was editor of the law journal. Or that today, at 52, she is happily married, a law professor at the University of Southern California, and an adjunct professor of psychiatry at the University of California in San Diego.
To be sure, Elyn Saks is not typical of most people with schizophrenia, noted Dr. Dost Ongur, director of the schizophrenia and bipolar disorder program at McLean Hospital in Belmont. She is extremely high-functioning, compared to other people with schizophrenia, or, for that matter, the rest of us. It's somewhat of a mystery how she has done so well, but she's certainly benefitted from an increasingly sophisticated array of medications and unending work on herself.
Saks's decision to go public with her inner struggle is another milestone in the battle to destigmatize mental illness, Ongur said. It allows people blessed with comparatively undamaged brains to understand, if only vicariously, what it feels like to live with a brain gone wild.
"Imagine how difficult it would be to be confused and disoriented ... and to live in fear that someone was about to harm you or your family," said Ongur. The hopeful message from Saks's journey is that it shows "that a diagnosis of schizophrenia is not the end of someone's productive life. It's not a death sentence."
Schizophrenia, once thought of as a failure of parenting, is now known to be a brain disease characterized by psychosis (a loss of contact with reality) and thoughts that are delusional, such as the false conviction that one is being persecuted or that one's actions are being controlled by outside forces.
One theory, supported by numerous studies, is that in schizophrenia, there are too few brain cells that produce a chemical called GABA, the brain's chief inhibitory neurotransmitter. Brain scans also show that people with schizophrenia "have slightly less brain tissue" than normal, Ongur said.
An emerging theory is that schizophrenia, which tends to run in families, may also be a failure of myelination, the process by which a fatty, protective sheath is laid down on the wires, called axons, that connect brain cells to each other.
Without proper myelination, the brain of a person with schizophrenia cannot squelch disturbing thoughts, such as the fear of death of oneself or a loved one, said Dr. George Bartzokis, a professor of neurology at the David Geffen School of Medicine at UCLA who does research on schizophrenia. "Your ability to inhibit those thoughts, which has to be faster than the thoughts themselves, isn't there. So the person thinks that these thoughts are not coming from himself "but from God or whatever. It's very disturbed thinking."
Bolstering this theory is the fact that one of the genes associated with schizophrenia is neuregulin, whose job is to help put myelin on the axons of brain cells.
Newer, so-called "atypical" antipsychotic drugs such as Clozaril, Zyprexa, Geodon, Risperdal, Seroquel, and Abilify help many people, including Saks.
Saks also has lots of social support, including a husband who, she said in a telephone interview, can now tell before she can when she is about to "flip" into a psychotic episode.
Saks readily concedes that, despite intensive therapy and medications, she is not cured of schizophrenia. No one is.
To help her cope, she does some academic work every day because that helps keep her oriented toward reality. She schedules ample rest time and has learned to keep stress to a minimum. (Stress has been shown to inhibit myelin production.) And unlike most people with schizophrenia, she believes that psychotherapy - in her case, ongoing psychoanalysis - helps her cope.
Many, perhaps even most, psychiatrists think that the thought processes of people with schizophrenia are too disordered to allow psychoanalysis, a particularly intense form of talk therapy, to be useful. But Saks said that, in her case, anyway, "psychoanalysis has helped me make meaning out of the struggle."
Saks said that the meaning she has drawn is that it's time to stop "marginalizing people who are different. Many people think that those with mental illness are to blame and that it's OK to criticize them."
"I did not overcome great odds by sheer force of will," she said. "A huge number of resources have been and still are invested in me - long-term therapy and medications. We need to put more resources into the system so that other people with schizophrenia can live up to their potential as well."