Ask the author
What inspired you to write a book about your sister's mental illness and its impact on your family?
When Rachel died— she was 59— I felt a sudden, pressing need to tell her story. My older sister was a strong, courageous woman, who endured decades in a psychiatric system that couldn’t help her. Although she survived, she became an outcast from society. I wanted people to understand she was part of a family that loved her, even though we couldn’t care for her. This urge to honor her life was unlike anything I had felt before. I couldn’t ignore it.
What was it like for you to revisit and recount the experiences and emotions surrounding your sister's mental illness while writing the book? Was it cathartic?
It was very painful and required a lot of support from my therapist. I began to remember how hopeless and despairing I felt when Rachel became so ill.
But in writing the book, I was able to let go of the shame and guilt that had burdened me for so long. So yes, that was cathartic. My feelings of depression lifted. And I had a powerful feeling that I was back with Rachel again, writing with her. The book joined us together again and that was so important to me.
How did your sister's mental illness shape your own personal journey?
I needed stability and married early. Rachel’s illness influenced my career choice as well. I wanted to write, but I needed to be “not-Rachel.” So I veered toward the logical and analytical, not the poetic. Part of me felt that creative writing was connected to her illness: Could something similar happen to me if I wrote from my heart? I had to overcome that irrational fear in order to write a memoir.
What specific moments stood out to you during Rachel’s struggle with mental illness and how did they influence your understanding of the condition?
I was flabbergasted when Rachel told me she was being followed from New York to San Francisco. I realized than what my parents had been telling me was true: something was wrong with her that required intervention. But even so, it took me a while to accept her illness. Most people associate schizophrenia with its “positive” symptoms such as hearing voices. Rachel mainly exhibited “negative” symptoms—lethargy, absence of affect, lack of motivation and hygiene.
What role did research play in your writing process? Can you tell us about any valuable insights or discoveries you made?
I loved researching my family’s history. My parents saved every letter from all four of their children. I retrieved hundreds, along with legal documents and correspondence. It took me years, but I went through them all. I also obtained hospital records to gain a timeline of Rachel's journey in and out of hospitals, boarding houses and homeless enclaves. At the bottom of one heavy box of hospital records I found letters Rachel wrote applying for a work program to transition out of the state system. I was overjoyed to talk to the social worker who finally got her out. He gave me great insights into her strengths. To keep up with current developments I attended conferences and NAMI workshops; I read books and articles by professionals, advocates and family members. I took a course on mental health and the law and discovered the big divide between psychological and social approaches on one side and medical and pharmaceutical ones on the other. The biggest opportunities for recovery, I learned, lie with interventions that involve some combination of family, peers and community support. Medication can be part of the solution, but not the whole thing. Thomas Insell, former head of National Institute for Mental Health, argues that we have proven answers to the mental health crisis, but we’re failing to use them. He says we don’t need to wait for a new medical or scientific breakthrough to solve today’s mental health crisis.
In a section called "Epigenetics," you wrote about Rachel's earliest years before you were born. Why did you go back that far?
The term "epigenetics" refers to the impact of the environment on the expression of DNA, as opposed to the actual genetic code itself. Through genetic markers, social, psychological, and environmental factors can influence brain development—whether and when specific traits get switched on. Rachel was born during World War II in a stressful family situation, and, as I suggest in the book, may have set the stage for the difficulties she faced later in life.
Are there any specific misconceptions or stereotypes about mental illness that you want to challenge or dispel based on your research and experience?
There are no simple answers or magic bullets for serious mental illness. From my experience as a family member, I believe that what’s most needed is emphasis on recovery and rehab programs—socialization, housing, and job coaching.It’s obvious to everyone that deinstitutionalization in this country has failed to achieve its goals. Tragically, government funding that was meant to flow into the community as part of de-institutionalization was instead diverted to general operating funds or cut entirely from state budgets. Some people say we should bring back psychiatric hospitals. That’s too simplistic. We do need more safe places for people in crisis but I’m troubled by the idea of lowering legal safeguards against coerced, involuntary treatment. I know from everything Rachel went through that long-term hospitalization is a brutal, inhumane solution.
Your memoir places a lot of importance on the political atmosphere of your childhood. Why was that important to you?
My parents, who raised four children during the Cold War were so left-wing that they attracted the attention of the FBI. Imagine having two agents knock on your front door while you’re watching Khrushchev address the United Nations on television. I think Rachel took our family’s vulnerability to heart, and the impact of FBI surveillance on the family had an impact on her.
Would things turn out differently for Rachel if she became ill today?
Today, she probably wouldn’t deteriorate so quickly or so badly. There’s an emphasis now on rapid treatment after the first episode of psychosis, and on careful follow-up, including family support and education, such as Family-to-Family workshops provided by NAMI. The Open Dialogue approach, an international movement for supporting those who experience psychosis, does so in a voluntary and non-hierarchical way. The Hearing Voices Network also provides one of the growing number of alternatives to the standard medical model of treatment. Antipsychotic medications, which took such a serious toll on Rachel at the onset of her illness, have improved since then, even though they still don’t work for some, and have side effects that are intolerable for many more. Other bright spots: Some NAMI chapters are now training families in a way of communicating that encourages a person with a serious mental illness to accept treatment—it’s called L.E.A.P. (Listen, Empathize, Agree, Partner). Community mental health agencies, while sparse and woefully underfunded, deliver programs to meet long-term needs for outpatient treatment. The Fountain House approach, for example, has been quite successful as a national model for community-centered recovery services.