One morning, when Elyn R. Saks was in high school, she suddenly decided to leave class and head home. During the three-mile walk, the world around her started “becoming very intense,” and she began to think that the houses were sending her messages: Look closely. You are special. You are especially bad. Look closely and ye shall find. There are many things you must see. See. See.
This was Saks’ first psychotic episode. Her mind quieted for a while and, after high school, she became class valedictorian at Vanderbilt University and received the Marshall scholarship to study philosophy at Oxford. While there, the 21-year-old Saks experienced a complete schizophrenic break. This time around her dark fantasies took a frightening, suicidal cast. She told a doctor that maybe she should douse herself with gasoline and set herself on fire. “That might be best, because I am bad and deserve to suffer.” This episode led to one of two lengthy hospital stays in England. When she completed her master’s degree 1981, she had lost two years to her illness.
At one point, Saks was told that she “would live in a board and care facility and work at a menial job at best.” Today, she is a recipient of the MacArthur “genius” grant, a law professor at the University of Southern California, and a mental health policy expert. Partly inspired by her own experience of being forcibly hospitalized, which she vividly describes in her 2007 memoir, The Center Cannot Hold: My Journey Through Madness, she often advocates for greater patient rights and autonomy.
In Saks’ 2012 TED Talk, she closes by saying that if there were a magic pill that would instantly cure her, she would take it in an instant, but she doesn’t regret the life she could have had nor does she want pity. Says Saks, “… the humanity we all share is more important than the mental illness we may not. What those of us who suffer with mental illness want is what everybody wants: in the words of Sigmund Freud, ‘to work and to love.’”
The humanity we all share is more important than the mental illness we may not.
Here Saks discusses the realities of dealing with schizophrenia, the importance of her husband and friends, and the and the biggest misconceptions about mental illness.
Would you mind describing one of your more powerful psychotic episodes?
It was November, first semester of my first year at Yale law school, and I started slipping. I walked outside on the roof of the Yale law school library, which was flat and safe. Some friends came and I started gesticulating, dancing around, and singing, “Come to the Florida sunshine bush, where there are lemons, where they make demons.” My friends asked if I was on drugs. I said, “No. No drugs at all.”
I had delusional beliefs that I could kill people with my thoughts. And my speech was incoherent. For example, I said “Are you having the same experience I am of words jumping around in our legal cases? Our cases have been infiltrated. We’ve gotta case the joint. I don’t believe in joints, but they do hold your body together.” These are called “loose associations,” where words are loosely associated, but don’t make sense together.
Eventually, we all went home. The next morning, I went to see my professor to ask for an extension and I started behaving the same way. He took me to the Emergency Room, where I was restrained for the first time. It was extremely toxic and traumatic. From there, I ended up hospitalized for five months. That happened around ’82, ’83. I haven’t been in a hospital since then. That is sort of my proudest accomplishment, which is a weird thing to say. You wouldn’t say you were proud of not relapsing from cancer, but I think there are small choices people can make that will lead to better or worse outcomes. Thank God my analysts have all been willing to sit with a certain amount of anxiety about my well being for the sake of respecting my wish not to be hospitalized.
What symptoms of schizophrenia do you still experience?
My husband likes to say that psychosis is not an on-and-off switch but a dimmer. At one end, I’ll have a crazy idea, like I’ll think I’ve killed people with my thoughts, and I’ll recognize it immediately: “Oh, Elyn, that’s just your illness acting up. Pay it no mind.” And then further along the spectrum, say we have house guests. I love my friends but I find it hard to be around people a lot. I may have three or four days when I’m in and out of psychosis. At the far end, I’m crouching in a corner shaking, scared out of my wits. That hasn’t happened in a good decade. I still have some transient symptoms, but nothing really severe or really long lasting.
It’s sort of silly to quantify but, when I was in England, I would say like 70-80 percent of my waking thoughts were psychotic. At Yale, in New Haven, I would say 30 percent. Now we’re talking about three to four percent.
Psychosis is not an on-and-off switch but a dimmer.
How do your husband and friends help monitor your illness?
My husband and my closest friend Steve serve as another set of eyes if I start slipping. I’m very happy to have them involved. Occasionally, one of them will want to call my doctor and I say, “If you want to, that’s fine.” One time Steve called my doctor and said, “Elyn seems really unwell. She’s talking about going to China in advance of your trip to clear out of all the bad people.” To which my doctor responded, “How very considerate of her.”
Do you think having these strong social connections is a big part of dealing with schizophrenia? I imagine it’s very difficult for some people with the illness to maintain those connections.
I’ve been very fortunate. Some of the so-called “negative” symptoms of schizophrenia [meaning behaviors that are absent or diminished compared to people without schizophrenia – ed.] are a lack of relationships, a hard time working, and withdrawal. I’ve been spared those negative symptoms. Having people in my life makes my life much better and gives it meaning and depth. I sometimes have students with the illness. We’ll have lunch and they’ll ask me, “How do you manage to keep your friends? I haven’t been able to.” I don’t really know what to say except that if you are a good friend to people, they’ll be good friends back.
What are some of the biggest misconceptions people have about schizophrenia and those who suffer from it?
First is that we’re violent. In fact, people with mental illness—that’s not just schizophrenia but everything—commit only around two to three percent of violent crime. We’re much likelier to be victimized than be victimizers. I think we need to educate the public that mental illness doesn’t mean dangerousness. The more flamboyant crimes usually do involve mental illness, but those are so rare.
The second thing is that people cannot live independently, cannot work, cannot have relationships, cannot get married, cannot have kids. It’s just not true. A lot of us can do those things.
I think we need to educate the public that mental illness doesn’t mean dangerousness.
I’ve read that, when it comes to treatment, you’re against force being used, for example: to restrain someone during an episode, or to force them to make a decision they can’t choose to make. How should we help someone is who is having a psychotic episode get treatment?
I’m not totally anti-force. I think there are cases were force is needed. For example, if someone’s imminently dangerous, or if they cannot understand their situation and make a competent choice. If my loved one said, “This anti-psychotic medication has really helped me in the past, but I cannot take it now because I’ve been told it will cause a nuclear explosion,” I would want to step in and say, “Give her the meds.”
I’d also like to say that I think force is not good. It causes humiliation and shame. And it’s a very unstable solution because once you stop administering the force the person has no incentive to go back. We should use it as little as possible. What I propose is studying ways to get people to want treatment, so we don’t have to use force. I think that should be a big research focus of psychiatrists and psychologists.
What are some ways to help people want to get treatment?
Well, I want to do a study that has three arms. One will be someone who’s gotten on medication right away and stayed on it. The other extreme would be someone who has resisted medication for 10 years, tried to get off every couple of months, or stayed off for a year or two. In the middle are people who kind of tip. These people start off noncompliant and not wanting medication, and then something happens that makes them want it. I think by studying those three groups, we can learn some of the things that make people tip. Then we can help other people tip sooner and more completely.
Why do people refuse anti-psychotic medication?
I think people refuse meds for all sorts of reasons. One, they don’t like the side effects. But to me, if the choice is between gaining some weight and being psychotic, I’m going to take gaining weight. I gained about 20 pounds. If I gained 100 pounds, I might feel differently. Second, they feel better and don’t think they need it anymore, similar to the way people stop antibiotics before they’re supposed to. Third, they’re in denial that they have an illness.
To me, the most powerful reason [to refuse anti-psychotic medication] is the narcissistic injury of having a mental illness and needing medication. That’s the thing that most affected me. It’s just very painful. I wanted to get off medication to prove that I really wasn’t mentally ill, that it was all some big mistake. Ironically, once I got on the medication consistently and accepted the illness, it became much less front and center. I’ve found that the more I embrace it, the less it defines me.
I’ve found that the more I embrace [my condition], the less it defines me.
There are ways you can encourage people to take meds. Try to get a sense of their needs, wants, and values, and how meds fit into that. For example, I think you can tell people, “Whether or not you’re ill, this med will help you with the restlessness you’re complaining of or the sleeplessness.” There’s a really good book by Xavier Amador called I’m Not Sick, I Don’t Need Help! that walks families through trying to get their loved ones to agree to meds.
What helped you decide to start taking medication?
I always took it, but I was trying to get off of it for about 10 years. Actually, my doctor kind of coerced me. He said, “Look getting off medication keeps you going in and out of episodes. You want to get on with your life. If you want to keep seeing me, you have to take your meds.” Once I got on the meds consistently, my life got much better. I wouldn’t think about going off of them now, because I just have a much better life than when I was going on and off.
What meds are you currently on?
I’m on Prozac for anxiety and Clozapine for schizophrenia.
How has psychoanalysis helped you cope with schizophrenia?
First, stress is bad for any illness, particularly mental illness. Analysis can help you identify and either avoid or manage your stressors. Second, it fortifies an observing ego, so you can stand back and view what’s going on in your mind and assess it and understand it. Third, it’s a safe place to bring your crazy, violent, and chaotic thoughts, sort of like a steam valve. If you say [these thoughts] in therapy, you don’t have to say them in your outside world. Also, therapy can involve insights. I remember once I was saying violent things and my doctor said, “Elyn I think you’re saying violent things because you’re scared. The violence is your defense against the fear.” That helped make it go away.
Then finally, having a kind, smart, and well-meaning person who accepts you not only for the good but also the bad and ugly is very empowering and helpful. Another way to think about it is that people with schizophrenia have relationship and work issues just like everybody else, and therapy can help with those issues. In the field today, we think not so much in terms of reduction or remission of symptoms, but quality of life. It’s for the person herself to say what that is for her. Therapy can help achieve that.
Do you think that with the right help many other people with schizophrenia could lead similarly high-functioning lives?
I’m doing a study on high-functioning people with schizophrenia with some folks at UCLA and USC. People sometimes say I’m unique, but in fact we fairly quickly got 20 subjects—two MDs, two JDs, Ph.D. candidates, full-time teachers, a CEO of a not-for-profit organization. There are people out there like me. It’s just so stigmatized that they don’t come forward.
There are people out there like me. It’s just so stigmatized that they don’t come forward.
I asked psychiatrist and schizophrenia expert Stephen Marder what percentage of people with schizophrenia he thought were high functioning in our sense, which would be professional, managerial, technical, etc. He said, “I don’t know, Elyn. But the real question is how many could be if we provided proper resources.” I thought that was the right answer. I think it’s a mistake to tell people, to lower their expectations. I think many people can live up to their premorbid potential with enough help and enough support. And it does them a really big disservice to basically tell them to stop trying.