by Elisa Hurley, PhD, Education Director
Elyn R. Saks’ 2007 memoir, The Center Cannot Hold: My Journey Through Madness is not an easy book to read. In it, Saks, a distinguished law professor at the University of Southern California, paints a vivid, terrifying, and very human portrait of a life lived with schizophrenia.
Saks tells the story of her unfolding mental illness in almost novelistic terms. Her account begins at age eight when she starts to develop obsessive fears and terrifying hallucinations, signs of the devastating illness incubating within her. The subsequent chapters tell the story of Saks’s adolescent, college, law school, and early professional years, introducing us along the way to a cast of friends, mentors, therapists, and medical professionals who will play significant roles, for better and worse, in her journey into and through full-blown schizophrenia.
Saks’ narrative style is very matter-of-fact; even when she describes her most frightening and disorienting hallucinations, she does so without dramatic editorializing, instead letting the vivid descriptions of her experiences speak for themselves. The effect is gut-wrenching—though we cannot know exactly what it feels like to have “faceless, nameless beings. . . controlling [our] thoughts,” we nevertheless share in her disorientation, helplessness, denial, and rage both at what is happening to her and at the failure of so many to understand it.
Given that Saks is now a successful and well-published academic, it will not spoil things to reveal that she has found ways to manage her mental illness. Indeed, one of the most remarkable features of Saks’s story is how, even while she is struggling through her most serious psychotic episodes, she finds solace, calm, and lucidity in her work. And though her education is at points interrupted by hospitalizations, she manages to not only complete but excel in programs of study at Vanderbilt, Oxford, and Yale Law School.
Saks is explicit about how her ability to thrive, not only professionally, but personally—she forms incredibly close friendships and also finds a loving and supportive spouse—influenced her decision to write her memoir. Not surprisingly, perhaps, this fact has also shaped her work in mental health law, much of which focuses on the dignity, autonomy, and rights of the mentally ill, for instance, the right to refuse treatment. One of Saks’ most important contributions to legal scholarship is to remind us that mental illness is not equivalent to decisional incapacity, and that, regarding the question of whether a person should be permitted to make his or her significant life decisions, it is the latter, not the former, that is relevant.
During her keynote address at this year’s Advancing Ethical Research (AER) Conference, Saks will bring this distinction between mental illness and decisional incapacity to bear on the context of research participation. As a schizophrenic and current research subject herself, her remarks promise to shed important, perhaps disconcerting, new light on the little-discussed domain of research with the mentally ill, just as her book does on the personal experience of psychosis.