Life, unrestrained

One doesn’t have to listen to Elyn Saks, JD, PhD long before realizing that she has one of the most interesting brains on the planet—shaped not only by an innate brilliance, but also by the schizophrenia that she has learned to live with most of her adult life.

Elyn, who today is a professor of law, psychology, and psychiatry and the behavioral sciences at the University of Southern California’s Gould Law School, opened with a brief recollection of her early experience with schizophrenia. Her prognosis was described as “very poor” and “grave.” She, the professionals predicted, would never be able to live on her own, let alone hold a job.

“Yet here I am,” she said. “I have not only a great job but also wonderful friends and a most beloved husband, Will Vinet.”

But her journey to recovery, marriage, and career wasn’t easy. In fact, the two biggest obstacles she would face in her personal quest for recovery and a meaningful life were posed by the treatment process itself.

“Gravely disabled”

The first—the stigma associated with mental illness—struck Elyn the first time she was put into the second—the physical restraints that signified involuntary treatment.

“The stigma of mental illness is the belief that there is a fundamental difference between mental and physical illness, between a mental disability and a physical disability. This belief is that mental illness makes one less than a whole person,” she explained.

At the time mental illness struck, she was in law school, experiencing a range of disabling symptoms that slowed the progress of her work. She decided to take responsibility for the situation by asking one of her professors for an extension on some classwork, an experience she recalls in her memoir, The Center Cannot Hold: My Journey Through Madness:

“I went to my professor’s office to ask for an extension, and began gibbering unintelligibly as I had the night before. He eventually brought me to the ER.

“Someone I will call just ‘The Doctor,’ and his whole team of goons, swooped down, grabbed me, lifted me out of the chair, and slammed me down on a nearby bed with such force that I saw stars. They bound both 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, scraping my throat raw.”

Elyn was involuntarily hospitalized. The reason given for holding her against her will was that she was “gravely disabled.” The principal supporting evidence for the claim, as she sees it, ”was that I couldn’t finish my Yale Law School homework,” a remark that drew laughs and caused her to wonder aloud,

”What would this mean for the rest of the world?”

‘Nothing benign’ about restraints

Of the next 12 months, Elyn would spend five in psychiatric hospitals on the East Coast. She recalls spending up to 20 hours per day in restraints—hands tied, hands and feet tied, or hands and feet tied with a net across her chest. Not once, though, did she ever threaten, strike, or attempt to hurt anyone. The experience was seared into her memory.

“If you have never been restrained yourself, you may have a benign image of what happens when a patient is placed in mechanical restraints. There is nothing benign about it,” she recalled, noting that “every week in the United States, several people die in restraints: they aspirate vomit, they strangle, they die of heart attacks.” To her, it is unclear whether restraints “save lives or cost lives.”

Like many who struggle to overcome a mental illness, Elyn resisted long-term use of medication, making many efforts to get off of it. She now views this resistance as evidence of the idea that “the experience of involuntary treatment sets us up to internalize the stigma that separates us from others.”

“As I think back, it seems clear to me that I had internalized the stigma against mental illness that is so pervasive in our society.” At a time when “my analyst was urging me to stay on meds and just get on with my life,” Elyn decided “I would give getting off meds one last try.”

After two weeks of cutting back, feeling that she must “complete the mission” of breaking free from meds, Elyn stubbornly resisted her worsening symptoms, as well as the opinion of her trusted psychiatrist, who suggested that he should “get you into UCLA [Medical Center] right now,” even promising to “keep the whole thing very discreet.”

“Note the double message there, the stigma,” Elyn said. “The message was, ‘you need medical care but it needs to be hidden.’” Elyn realized that her own, internalized sense of stigma was causing her to pay a heavy price.

“Eventually, I broke down in front of friends and acceded to everyone’s demand that I take more meds. I am now on meds consistently and my life is much better,” she said, adding that she came to realize, “My illness no longer defines me. It is no longer my essence.”

Three essentials for recovery

“Everything about this illness says that I shouldn’t be here in front of you today. But I am. And I am, I think, for three reasons. First, I’ve had excellent treatment. Intensive psychoanalytic psychotherapy—four to five days a week for many years, and continuing—has been combined with excellent psychopharmacology. Second, I have many close friends, family members, and colleagues who know me and who know my illness. They have given my life a richness and meaning and they help me navigate life in the face of my symptoms. Third, I have a wonderful work environment. My law school is an enormously supportive setting and it not only accommodates but embraces my needs. It is also very challenging intellectually, and using my mind is one of my most potent weapons against my mental illness.”

To those of us who have an understanding of the recovery experience, either firsthand, through our work, or both, Elyn’s three points were music to our ears— appropriate treatment, a human support system, and interesting work. These are the tenets on which our theories are based and our programs are built. To have her validate our efforts this way was very rewarding.    

Moving beyond stigma

Like many of us, Elyn did not make her illness public until later in her life due to stigma which causes us to not feel safe with people knowing.

“Telling stories is hard and it’s risky. A number of well-known people with mental illness have ‘come out’ within the last decade or so, including Kay Jamison, Marsha Linehan, and myself. Dr. Jamison has bipolar disorder and Dr. Linehan has borderline personality disorder. We all waited until we were very far along in our professional careers to tell our stories.  

“This is of course neither a coincidence nor an accident. Coming out as a person with a severe mental illness carried substantial professional and personal risks. And it will remain that way until people with these illnesses feel that coming forward and telling their stories is safe.”

We have probably all known people who are dismissed once it becomes known that their personal or professional struggles involved a mental illness. Their medical concerns are dismissed as symptoms of mental illness instead of legitimate physical problems. In her case, this manifestation of stigma nearly cost Elyn her life: “My friends found me in my apartment in total disarray. I had no short-term memory and I kept asking the same question over and over again. They took me to the ER. And then a predictable disaster occurred—the ER doctors found my psychiatric records. They decided I was just having a psychotic episode, even though my friends were jumping up and down, saying this was not how I acted when I became psychotic.

“The ER docs sent me home. A few days later, at the insistence of my internist, I returned to the ER. A spinal tap revealed a subarachnoid hemorrhage. My brain was bleeding. This condition kills 50 percent of the people who get it. But, after my psychiatric records came to light, I was a mental patient and I was just having a psychotic episode.”

Elyn points out the destructive nature of stigma in yet another example that brings the pain of restraint together with the pain of stigma:

“While I was preparing to write an article on the use of restraints, I commented to a preeminent law school faculty member who was also a psychiatrist that he surely would agree that being restrained is degrading, painful, and frightening.

“He looked at me knowingly, then replied, ‘You don’t really understand, Elyn. These people are psychotic. They are different from you and me. Restraints don’t affect them the way they would affect us.”

“I didn’t have the courage to tell him in that moment that we aren’t any different. That we don’t like to be strapped down to a bed and left there to struggle for many hours anymore than he would. In fact, until very recently—and I’m sure it still exists—there has been a view among practitioners that restraints help psychiatric patients feel ‘safe.’

“I have never met a psychiatric patient who agrees with that view,” she concluded.