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Diary of a High-Functioning Person with Schizophrenia

Legal scholar Elyn Saks talks about her struggles with, and surprising triumphs over, mental illness


Elyn Saks is a law professor at the University of Southern California, a Marshall scholar, and a graduate of Yale Law School. She also suffers from schizophrenia -- an illness that many would assume makes her impressive resume an impossibility. In 2007, she published an acclaimed memoir of her struggle with the disease, “The Center Cannot Hold.” Her book is a frank and moving portrait of the experience of schizophrenia, but also a call for higher expectations -- a plea that we allow people with schizophrenia to find their own limits. If anything, she says, her work as a scholar has helped her to cope with the disease. In September, she was awarded a MacArthur Foundation “genius” grant. She chatted with Mind Matters editor Gareth Cook.

COOK: Can you describe your first experience with schizophrenia, I think you said that you were just 8 years old?

SAKS: I don’t think I would have been diagnosed as someone with childhood schizophrenia, but there were perhaps some early warning signs. For instance, I had periods of disorganization, where it felt like my mind was falling apart: there was no center to take things in, put them together, and make them make sense. Hence, following Yeats, I call my book “The Center Cannot Hold.”

The first frank episode of psychosis happened when I was around 16, and I suddenly started walking home from school in the middle of the day. I began to feel the houses were getting weird; they were sending me messages: “You are special. You are especially bad. Now walk. Cries and whispers.” There were also some warning signs in college but I didn’t really “officially” break down until graduate school at Oxford.

COOK:  Can you sum up the subjective experience of breakdown, so that people might understand what a person with schizophrenia is going through?

SAKS: Subjectively, the best comparison I can make is to a waking nightmare. You have all the terror and confusion and the bizarre images and thoughts that you have in a nightmare. And then with the nightmare you sit bolt upright in bed in utter terror. Only with a nightmare you then wake up, while with psychosis you can’t just open your eyes and make it all go away.

That’s subjectively. Objectively, I have delusions (irrational beliefs like that I have killed hundreds of thousands of people with my thoughts); infrequent hallucinations (like watching a huge spider walk up my wall); and disorganized and confused thinking (e.g. what are called “loose associations,” like “my copies of the cases have been infiltrated. We have to case the joint. I don’t believe in joints but they do hold your body together”). These are called “positive symptoms” of schizophrenia. Except for my first two years at Oxford, I have been spared the so-called “negative symptoms”: apathy, withdrawal, inability to work or make friends.

COOK: Do you experience symptoms every day or week? What are they?

SAKS: As my husband likes to say, psychosis is not like an on-off switch but like a dimmer. At one end of the spectrum, I will have transient crazy thoughts (e.g. I have killed people) which I immediately identify as symptoms of my illness and not real. A little further along the spectrum, I may have three or four days of being dominated by crazy thoughts that I can’t push away. And at the far end I am crouching in a corner shaking and moaning.

The transient psychotic thoughts I might have several times a day. The several-day episodes are usually a response to stress and may happen three or four times a year. The experience of crouching in the corner hasn’t happened for years.

COOK: When did you first sense that your academic work helped you deal with your condition?

SAKS: Except for my first two years at Oxford, and intermittently when in a serious episode, I have always been able to work. Indeed, work is, for me, the last thing to go. I think I have always sensed that keeping active intellectually is a big support and a big source of wellbeing. Indeed, I really noticed how important work is to my stability when it became clear that the worst part of each day was always the evening—the time I didn’t have the structure of work to contain me and help keep my thoughts organized.

COOK: How does it help you today? Do you ever say to yourself -- I think I need to do some work now, because I feel like I am slipping? Conversely, are there times when the stress of work aggravates your schizophrenia?

SAKS: Even when I am feeling symptoms, when I am working they usually recede—they become sideline rather than front-and-center. Work focuses my mind and provides a sense of self-esteem.

On the other hand, some parts of my job are stressful—e.g. classroom teaching. I am fortunate to work at a law school willing to accommodate me around teaching. Also traveling and giving talks is stressful for me; I usually decompensate the evening after I have given a talk, remaining in the land of psychosis for several hours. That’s the main reason I have largely stopped accepting invitations to speak. For the most part, though, my job involves thinking and writing, and those, for me, are enormously gratifying.

COOK: Have you ever been treated against your will, and, if so, can you explain the circumstances and the effect this had on you?

SAKS: I have been subjected to the use of force on numerous occasions. In the first instance, I was hospitalized against my will. I was said to be dangerous to myself and dangerous to others. I was also said to be “gravely disabled,” and the reason given was I couldn’t do my Yale Law School homework!

I was also forcibly medicated at times, though I usually realized I actually had no choice about whether to take the medication or not.

The most traumatic experience was of being mechanically restrained. My first few days in the hospital I was restrained probably twenty hours a day. Then for three weeks I was restrained maybe four to fifteen hours a day. I then transferred to another hospital, and even though my behavior hadn’t changed, I stopped being restrained. These restraint episodes were extremely traumatic. It is frightening to be put and kept in restraints, causes feelings of degradation and helplessness, and over, say, ten hours is extremely painful.. This was the worst trauma I have ever been subjected to. I had nightmares about it for years and years.

In addition to my experiences of force, I also experienced losing any privacy. For instance, in the beginning I sometimes was watched when I showered and went to the bathroom. For a five or six week period in one hospital I was given no privacy in conversations—staff was present at every conversation I had, including with my parents.

One thing force may do—and did to me in one respect—is to deter people from seeking treatment again. There have been times since my last hospitalization when it would probably have been in my best interests to be hospitalized, but I can’t imagine ever agreeing to that given my memories. I was fortunate that my analysts were all willing to take a risk for me and help me manage on my own, outside the hospital.

My bottom line? I like to say that I am very pro-psychiatry but very anti-force.

COOK: Can you please say more about your position on the rights of people with mental illness?

SAKS: I am very focused on patient autonomy. Maybe I am just very shame-prone, but, as I noted, the experiences I have had where force was used were very traumatic and shaming. At the same time, I believe that sometimes people lack the capacity to make their own decisions (much of my research has focused on how to understand and measure such capacity). In that event, a benign other should decide for them.

Where I depart from this standard account is allowing something I call “one-free-shot,” which I apply to civil commitment, outpatient commitment, and forcible medication. Basically, I would relax the criteria for imposing these the first time someone becomes acutely psychotic. As an example, I wouldn’t require dangerousness to hospitalize someone the first time if they are seriously psychotic. My rationale for this is that many people are grateful for forced treatment, and we should count that as a good outcome if they are. Once they have been treated under “one-free-shot,” they should be encouraged to sign an advance directive describing how they would like to be treated should they have another episode. At that point they will have experienced both the ravages of the illness and the possible benefits of the treatment and are in the best position to decide what they would like for the future.

I would also more strongly regulate the use of mechanical restraints, again in deference, in part, to people’s autonomy interests.

COOK: Can you give some examples of the ways your academic work and interests have been shaped by your illness?

SAKS: My area is law and psychiatry, which I obviously have had a lot of personal experience with. I initially focused on multiple personality disorder (now called dissociative identity disorder), because I wanted to study something that would not be so close to home, and I thought the philosophical issues raised by the disorder were fascinating. .

Over time I started to write about things that were closer to my heart, like forced treatment. My third book (“Refusing Care: Forced Treatment and the Rights of the Mentally Ill”) looks at issues like civil commitment and the right to refuse treatment. I suppose that my own trauma around the use of force really motivated me to study this.

I hope my experiences help my scholarship be better. I have been on all sides of the medication counter, so to speak: a patient, a lawyer for patients, a teacher about patients, a writer about patients, and a therapist for patients (I did some clinical work in connection with my studies for a Ph.D. in psychoanalysis). The positions I take are often things that wouldn’t have helped me but I think would be helpful to many people with mental illness.

There’s actually a funny story that underscores how I try to take into account all perspectives. My book, “Refusing Care,” takes positions both less and more paternalistic than current law (although my personal perspective is to value less paternalism and more autonomy). The book was reviewed in the Times Literary Supplement, and the author, a Maudsley psychiatrist, ended the review by saying words to the effect of “this is a scholarly and erudite book, but the author would do well to pay greater heed to the perspectives of those who would be on the receiving end of her paternalism”!

COOK: Do you feel like your experience, both a patient and a scientist, might offer insights into what is happening in the brain of a schizophrenic?

SAKS: I am actually part of a study being conducted by investigators at both UCSD and USC. The study will compare me to ten others, half healthy controls and half controls with schizophrenia (and similar demographics to my own). We are looking at three things: psychiatric evaluation; neuropsychological testing; and brain imaging (e.g. fMRIs and EEGs). We are trying to see if we can learn anything about what makes an individual with schizophrenia “high-functioning,” that is, able to hold a job and live an organized life. We are hopeful that in studying this question, which will entail looking at my own data, we can find helpful interventions.

Also, as someone with schizophrenia I can try to give a window into the mind of someone acutely suffering psychosis—that’s what I try to do in my book—so others can appreciate it and understand it more. I have gotten many emails, both from family members and from mental health professionals, thanking me for helping them understand what their family member/patient might be experiencing. Those emails are very precious to me.

COOK: What do you wish the public knew about schizophrenia?

SAKS: I think there are a lot of myths about schizophrenia. What I most wish the public knew is that, at bottom, we are really just like you: we want, in the words of Sigmund Freud, “to love and to work.” There are myths out there that we can’t do this, but they are just that: myths. Mental health professionals should stop immediately telling patient to drastically lower their expectations. With proper resources and proper care, people can live up to their potential. Finally, it is a myth that people with schizophrenia are more dangerous than the general public. The people really to fear are substance abusers, a diagnosis far more highly correlated with violence than mental illness.

COOK: Can you explain how you reacted to your diagnosis, and how your thinking has changed since?

SAKS: I was pretty devastated when I heard it. I had a sense of what it meant—it felt like a sentence to a bleak and painful life. I was also given a “grave” prognosis. That is, I was expected to be unable to live independently, let alone work. That obviously hasn’t turned out to be my life. In addition to having a great job I have a great husband and great friends.

It’s interesting, though, that my life actually got much better once I stopped fighting the diagnosis and trying to prove—by managing successfully without medication---that I wasn’t ill. I always undertook such efforts with great gusto and always failed miserably. Once I accepted the illness and the need for therapy and medication, my life got much better. My illness actually came to define me less—it became accident, so to speak, and not essence.

Are you a scientist? Have you recently read a peer-reviewed paper that you want to write about? Then contact Mind Matters co-editor Gareth Cook, a Pulitzer prize-winning journalist at the Boston Globe, where he edits the Sunday Ideas section. He can be reached at garethideas AT gmail.com.

 

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