The Center Cannot Holdby Christina Bruni Patient Expert
Photo by Will Vinet
From the book flap:
Elyn Saks is a success by any measure: She's an endowed professor at the prestigious University of Southern California Gould School of Law. She has managed to achieve this in spite of being diagnosed as schizophrenic and given a "grave" prognosis-and suffering the effects of her illness throughout her life.
Saks was only eight, and living an otherwise idyllic childhood in sunny 1960s Miami, when her first symptoms appeared in the form of obsessions and night terrors. But it was not until she reached Oxford University as a Marshall Scholar that her first full-blown episode, complete with voices in her head and terrifying suicidal fantasies, forced her into a psychiatric hospital.
Saks would later attend Yale Law School where one night, during her first term, she had a breakdown that left her singing on the roof of the law school library at midnight. She was taken to the emergency room, force-fed antipsychotic medication, and tied hand-and-foot to the cold metal of a hospital bed. She spent the next five months in a psychiatric ward.
So began Saks's long war with her own internal demons and the equally powerful forces of stigma. Today she is a chaired professor of law who researches and writes about the rights of the mentally ill. She is married to a wonderful man.
It's a pleasure and honor to talk with Elyn, whose book received a starred review in Publishers Weekly.
CB: First, I'd like to thank you for taking the time to speak with me. Perhaps you could tell us when you officially received your diagnosis and how old you were? You were at Yale Law School at the time, right?
ES: In 1977 I was hospitalized and would've been around 21 or 22. My illness started off looking like depression with some mild paranoid ideation but developed into full-blown psychosis. I received the diagnosis when I was hospitalized in New Haven in 1982.
CB: Your story is inspiring because you refused to believe the doctors who told you to drop out of law school, that as someone with schizophrenia, you should drastically lower your expectations. Yet you kept on going. Describe how you were able to do this. Where did you get that kind of fight?
ES: My brother, who's a year-and-a-half younger, told me as a teenager that I'm the most stubborn person he ever met. And I think that was both an asset and a limitation. A limitation because for a long time I wouldn't accept that I was ill and needed medication. And an asset because I fought people's lower expectations of me and I decided, "I'm going to do it anyway, you can't tell me I can't do this." So that fight, that stubbornness, cut both ways.
CB: What else enabled you to recover?
ES: I was enormously fortunate to have resources other people don't have. Mine is not the story of a lone individual triumphing over adversity. Friends and family and others gave me enormous support and help and guidance and love, and with that I defied what was expected.
CB: To me it's self-evident that honest work, labored at with enthusiasm, and tailored to a person's skills and abilities, boosts one's confidence and self-esteem. What advice can you give someone with this illness who wants to go to school or get a job?
ES: Everybody wants to feel productive, to work and contribute and feel they're doing something useful. You need to know your illness, learn how it unfolds and recognize early warning signs. Secondly, you need to have a good treatment team who can help you reach your goals, and understand what's happening and overcome obstacles. As you try new things, you want to surround yourself with people you trust who know you and can tell when you're getting symptomatic. Also, be professional and do a good job. Myself, I never disclosed until much later. Other people will feel they want to disclose earlier. It varies from person to person. One thing stood me in good stead: a lot of times I may believe that I have a special premium on the truth, but if I recognize that other people won't believe it and think I'm crazy, I'm motivated to not say it. That helped me in the work world as well.
CB: In the book, you repeatedly tapered off the medication, and this resistance to treatment propelled the book forward with dramatic tension. Do you believe you'll ever be able to go completely drug-free?
ES: For me, I resisted mightily for 10 to 15 years the diagnosis and the need for medication, and I tried to get off it over and over. Each time I would falter badly. You'd think an intelligent person would get the message a little sooner but I didn't. Two things convinced me: One, I made the most effort I possibly could with a lot of help from other people, and I couldn't tell myself any more that I just wasn't trying hard enough. Secondly, I got on a new drug that cleared my mind even more. I had the fantasy that everybody had the thoughts I had and that I was just socially maladroit for saying them. When I got on the new drug and started being clearer psychologically and mentally, I realized, "No, other people don't have thoughts that little nuclear devices are being set off in their brain." Ironically, when I accepted the medication and the diagnosis, the illness defined me much less.
CB: You struggled with the diagnosis-not believing you could be a law professor and have schizophrenia-for so long. How and when did it finally click that the two could co-exist?
ES: As I said, when I finally realized I needed the meds and was doing well on them. Also through therapy I challenged the belief about what it meant to be mentally ill and recognized it's like having migraines-sometimes you have down times, other times you're feeling good. Just recognizing that made me feel better.
CB: You've beat on the advocacy drum for patients to have the right to refuse medication. What if someone is psychotic or a danger to herself?
ES: I don't think the right to refuse meds should be absolute. If someone is imminently dangerous, or incapable of deciding because she thinks the drugs are poison or the doctor is trying to kill her, you should have a "benign other" act in your best interest. I think the drugs are helpful and for most people are essential. That's why this is a hard question: a person refusing is not taking advantage of something that could help them. Yet people have a right to make their own choices, even ill-advised ones. As I like to say, I'm very pro-psychiatry but very anti-force.
CB: Could you tell us about one of your current projects? You're studying high functioning individuals with schizophrenia because you're interested in the techniques they've developed to cope with or manage their symptoms. How's that going? What are you finding?
ES: It's going great. We want to have 20 subjects just in Los Angeles. They'll all be people who still have symptoms of schizophrenia and yet are either professionals, or in a managerial or technical position. People tell me, "You're unique," and I'm not. Just in L.A. over a couple of months we've got about 10 subjects so far, including an M.D. and a Ph.D. psychologist, high-level consumer advocates and a full-time student. I'm not alone. Our goal is to find out what people have cobbled together for themselves, things they've learned to do to help them manage their symptoms. What we hope to do is find some commonality so we can create interventions to tell people who aren't doing well, "Why don't you try this?" I'm hopeful about it and think it will be quite useful.
CB: I can imagine that stigma kept you and those others in the closet because you didn't want it to be known.
ES: Absolutely. I went for years before telling people here in L.A., and then only sparingly to my closest friends who I thought could handle it. Again, there's this myth that if you have schizophrenia, you can't work at a high level job, and people do; it's just that the stigma's so great they don't come forward.
CB: Lastly, I want to say how inspiring your story is to me, and will no doubt be to countless others. In a world where it seems that a woman can't have it all and has to juggle multiple demands, you really do seem to have everything you need. What's in your future?
ES: I love what I do and writing about issues around psychiatric illness and the law. And I want to keep at it. In addition to the study, I'm looking at ways we can get people to want treatment instead of forcing them to be treated. I need to investigate first whether or how this is being studied now. I have projects that could last for the next several decades that I'd like to work on.
CB: Thank you again, Elyn, for taking the time to speak with me. It truly was a pleasure.
ES: You're welcome.