Elyn Saks still remembers one of her earliest schizophrenic episodes, though she didn’t realize what it was.
“One day in the middle of school, (I) just got up and started walking five miles home, and I felt like the houses were sending me messages. ‘You are special. You are especially bad. Repent. Walk,’” she remembered. “I felt like entities were putting thoughts in my head, and it was upsetting and scary.”
She was 16 years old, and with time, those kinds of thoughts became increasingly disturbing and intrusive.
“I frequently had the delusion that I killed hundreds of thousands of people with my thoughts,” she said. “I had occasional hallucinations — a man standing with a knife raised above my head.”
Saks is one of an estimated 2.4 million Americans who have schizophrenia, a chronic and severe brain disorder that causes people to “lose touch” with reality.
Symptoms include hallucinations and hearing voices, paranoia, jumbled thoughts and catatonia (being unable to respond to others). The effects can be so devastating that many with schizophrenia have been told by doctors — as Saks once was — that they may never lead independent lives, find partners or hold down stable jobs.
By that kind of conventional psychiatric thinking, the story of Elyn Saks — a woman who studied as a Marshall scholar at Oxford University, graduated from Yale Law School, wrote a best-selling book and was awarded a MacArthur “genius” grant — is nearly impossible. But as she works to prove, schizophrenia isn’t quite what it’s been made out to be.
A painful discovery
Saks’ illness crept up as she pursued her education. At first, it looked like severe depression with mild paranoia, she said. Her 5-foot-10-inch body shed weight until she was under 100 pounds. But then her symptoms began to reflect more a disorder of thought than of mood.
“I didn’t think I should talk because I thought speaking would spread my evil around,” she said. “So I was very quiet.”
It all came to a head in law school. She remembers turning to one of her classmates one day and asking: “Are your copies of the legal cases being infiltrated like mine are? We’ve gotta case the joint. I don’t believe in joints, but they do hold your body together.”
The words made no sense.
“It’s like a waking nightmare with all the odd, bizarre, scary things happening,” Saks explained. “Only with a nightmare, you sit up in bed and open your eyes and it goes away. No such luck with a psychotic episode.”
After she said other scary and dangerous things, one of her professors brought her to the emergency room. When she refused to give over her belt to an attendant, they called security.
“They came in and they lifted me high off the ground and slammed me down in a bed, and tied my wrists and my ankles with a net across my chest to the bed,” she recounted. “I just screamed at the top of my lungs. It would never occur to me that someone would do that kind of thing to a person.”
She was kept in restraints for hours every day, an experience that she described as incredibly painful, terrifying and degrading. Saks is now an outspoken advocate against the use of physical restraints, hoping others can be spared what she calls “the most traumatic thing that’s ever happened to me.”
Then she received her schizophrenia diagnosis. “It felt like a sentence to a bleak and painful life,” she said.
But when a Yale psychiatrist suggested she not return to school and take a job as a cashier, something inside her rebelled.
“I thought to myself, ‘I’ve been a student all my life. I’m good at it. I like it. The hours are flexible,’” she said. “How much more stressful would it be to have a line of people (at the cash register) demanding change?”
Saks refused to drop out. Instead, she found ways to cope.
A friend in need
Saks noticed that “the crazy stuff recedes to the sidelines” when she focused on writing an argument. Structure and a full schedule reduced the frequency of her episodes.
“Having an open day, day after day, week after week, where you don’t have any plans or you don’t have any goals, or you don’t have any structures, is very debilitating and painful,” she explained.
Support networks were also key. Shortly after her diagnosis, Saks became friends with fellow law student Steve Behnke. He recognized that she would get scared of her own psychotic thoughts and that giving her company helped.
“There were times when I’d simply get out a book and sit with Elyn and I would read,” he said. “And she would sit. And being with someone, I think, Elyn found helpful. And those psychotic periods would pass. And that was for me the real object. Stay with Elyn until they pass.”
More than 30 years later, Saks and Behnke, now a psychologist, still talk almost every day. She turns to him as a sounding board when she becomes psychotic; he helps her figure out what’s real and what’s not.
“I can’t imagine life without friends,” she said. “I just can’t, really. (It) must be just so painful and desolate.”
Though Saks found ways to help manage her schizophrenia, she still struggled, like many people with the disorder, to come to terms with her medication. She repeatedly tried to get off it.
“One of her mottos was ‘The less medication, the less defective,’” Behnke said. “I think that much of Elyn’s life was fighting the idea that she had an illness.”
It took years for her to finally accept the fact that the medication reduced her symptoms, and that she liked it. The drugs, she said, have changed her life.
“It really wasn’t until I got consistently on medication and my mind cleared that I realized that everybody else’s minds didn’t contain the chaos and violence and fear that mine did,” she said.
In the end, it came down to accepting her illness.
“When I was really fighting it all the time, it was front and center in my life,” she said. “And when I kind of let go and accepted it, it sort of receded to the sidelines.”
With her symptoms under control, Saks was able to focus on other areas of her life. Over an 18-year stretch, she went on a couple of dates in the middle, she said. But for almost that entire time, internal demons shut off the possibility of romance or love.
Then she met Will Vinet, who worked at the law library at the University of Southern California, where she was a professor.
“She would occasionally come down and ask me for help with one thing or another,” Vinet recalled. “Later she told me she was trying to flirt with me, which I told her had not been terribly effective.”
He soon asked her to lunch, and the relationship took off from there.
“I really fell in love,” Saks said. “I never thought it would happen. It’s like the best thing that’s ever happened to me to have him in my life.”
Vinet admits he was “a bit naive about the implications” of her illness, but said he was never put off by it. “By and large, I’m quite happy to provide her the support she needs to structure her life and to function in it.”
Saks kept her schizophrenia a secret from most people. But over time, she felt that the secrecy contributed to the stigmas and myths associated with the disorder. So in 2007, she published a book about her struggles and experience.
“The Center Cannot Hold: My Journey With Madness” quickly became a best seller, and Saks, along with Behnke, is working to educate others about the misconceptions surrounding schizophrenia.
“I get a lot of email,” she said. “It falls in different categories. ‘Thank you for giving us hope.’ ‘How can we get our family member to take medication?’ ‘Here’s a new remedy. Stand on a table, turn around three times and take vitamin E.’ ‘I’m praying for you.’”
In 2009, Saks won a MacArthur grant for her work helping people understand her illness. In 2012, she delivered a TED Talk that has been watched more than 1.7 million times.
A long way to go
Saks and Behnke don’t go around saying that anyone with schizophrenia can accomplish the same exact things she has. Rather, they want to show that with the right treatment, supportive environment and resources, a person with the illness “can really meet their full potential.”
They are also very aware that not everyone has that support network.
“I think if you take a look and you walk down a street in any major city, you’re going to see a lot of folks with mental illness wandering around,” Behnke said. “No place to sleep. They’re looking through the garbage can.”
Americans with schizophrenia are eight times more likely than others to belong to the lowest socioeconomic group. It’s not that low-income people are more likely to develop the disorder, but rather that those with schizophrenia are more likely to struggle with school, jobs and stability.
But people from low-income homes are also less likely to be diagnosed early, potentially exacerbating the disorder and pushing them deeper into poverty.
“We as a society have not gone as far as we can in ensuring that folks like that have good treatment, have good support systems,” Behnke said. “The U.S. has a long way to go.”