On September 2, 1985, my wife, Rose, and I picked up her eighteen-year-old sister, Lynn, at LaGuardia Airport. Lynn had been one of the best-liked, highest-performing students in her Wisconsin high school. She was attending community college and living at home with her lovable, babushka-wearing, Hungarian-immigrant mom, a hard-working, church-going widow who cleaned houses to support herself and Lynn. But recently their relationship soured. They started having bitter fights. One day, in an unprovoked, psychotic rage, Lynn slapped the mom she loved. She was hospitalized for “being mental,” then came home, and after several weeks, when her medications wore off, she repeated the behavior.

My wife and I thought the problem was due to an American teen living with an old-world mom and that moving Lynn to New York City to live with us aging hippies would solve all her problems. We were that stupid.

At first, Lynn was the perfect New Yorker, taking long walks in Central Park, people-watching in our Chelsea neighborhood, and shopping in the East Village. But slowly, as the weeks went by, her concentration became scattered and her speech became rushed, breathless, and pressured. Delusional thoughts would come cascading out of her mouth in an uncontrollable barrage of disconnected ideas that made no sense, even to her. She started becoming paranoid, convinced that conversations taking place across the street involved plots to kill her.

One afternoon, after she spent hours screaming at the voices in her head, we took her to the emergency room. She was admitted, diagnosed, medicated, and provided rehabilitative therapy. But to “protect her privacy,” her doctor wouldn't tell us her diagnosis, what medications he'd given Lynn, or what would happen when her hospitalization ended. Lynn returned home to us and stopped taking the antipsychotic medications we didn't even know she'd been prescribed. She deteriorated again, started screaming at voices only she could hear, and engaged in pitched arguments with herself about Jesus, God, and the devil.

We tried to get her to go back to the hospital, but she refused. She didn't think the problem was with her; she knew it was with us. She “knew” we were plotting to kill her. Her illness told her so. “I know you're trying to poison me. I'm going to kill you first,” she said more than once. We called the police, hoping they could get her to the hospital, but when they arrived, Lynn went mute, so they didn't see evidence of her being a “danger to self or others.” “We can only help after she becomes violent, not before,” the displeased officer informed us.

Eventually, she slipped into catatonia, was rehospitalized, and the pattern repeated: hospitalize, stabilize on medications, go off medication, rehospitalize. After Lynn underwent several ins and outs, a nurse remarked, “Well, people with schizophrenia often feel that…” “Schizophrenia? Is that what she has?” my wife asked. “Didn't your doctor discuss that with you?” the nurse innocently inquired. Nope. Never did.

I started researching schizophrenia and was astounded by the depth of my ignorance. I thought schizophrenia meant a split personality. That it was psychological, not medical, and people with it were just plain “nuts.”

It's a real physical disorder, but because it affects the brain, people who suffer from it sometimes don't even know they are ill and therefore can't regulate their thoughts or behavior. They become victims of their hallucinations and delusions and often can't think straight.

The next time the hospital released Lynn, we got her into a day treatment program that was supposed to offer the structure people with schizophrenia often find comforting and help her reintegrate and regain skills she had lost. But a few weeks later, the program director called and said he didn't want Lynn in the program anymore because she wouldn't attend group therapy. We asked Lynn why, and she told us that in group therapy everyone talked about suicide and she found it depressing and against her Catholic religion, which proscribes suicide. In other words, she had two very good reasons for not attending group therapy, and because of that, they were going to end her treatment. That was the moment when I realized how dysfunctional and disconnected the mental health system had become from the needs of the seriously mentally ill.

I started raising money for the New York City chapter of the National Alliance on Mental Illness (NAMI) and eventually joined the board. The NAMI chapter was staffed by exceedingly dedicated volunteers, primarily aging mothers of persons with serious mental illness. These heroic moms answered helpline calls from other moms and gave out fact sheets. The most frequent calls were what one would expect: How do I find the right doctor? How do I find the right medicine? Is there a housing program for my relative? How do I plan my estate?

But one common call was “My seriously mentally ill son/daughter/mother/father/sister/brother is locked in his room. He ‘knows’ the FBI planted a transmitter in his head and won't come out. He won't eat because he ‘knows’ the food is poisoned, won't shower because he doesn't want to wash away his protective field, and can't sleep for fear of attack. What can I do?” There was no answer to this question, no fact sheet we could write. The law prevents parents from helping psychotic or delusional loved ones who refuse treatment until after they become a danger. As ludicrous as it sounds, rather than preventing violence, the law requires it.

That realization led me on a thirty-year journey to try to find out what is wrong with the mental health system and what can be done to fix it. This book is the product of that search.