My most important thank-you is to my mother and father and brothers. They all lived beside me for years while my world was infested by hell. Thank you to Steven and to Mark; and now to their wives, Ann and Sally, for their friendship; and also to my three nephews, Mason, Jake and Austin. To Mom and Dad—just plain thank you. You're incredibly special. Love and many hugs.
—Lori Schiller and Amanda Bennett
March 1, 1994
I first met Lori Schiller when she was a patient and I was a staff psychiatrist at New York Hospital. I was her case administrator while she was in the throes of the worst of her illness. I followed her through her depths into recovery. Today I am her therapist.
Even knowing Lori as well as I do, I was both surprised and moved by her account of her battle with schizophrenia. For, in this very personal book, Lori Schiller becomes our eyes and ears into a strange and terrifying world. Hers is one of the most compelling looks inside that world we have ever been able to take.
Back in the early parts of the century, such personal accounts of mental illness were more common in medical literature. Back when psychiatrists knew little about the workings of the brain or about the causes of mental illness, they pored over case studies looking for clues. Back then the anguished accounts of mental patients were an important window—if only for medical professionals—into what the subjective experience of mental illness was like.
Today, the whole psychiatric field has become much more scientific. Our focus has shifted to the study of the biological causes of mental illnesses like schizophrenia. Our treatments today turn increasingly to medications. Our hope for the future of many mentally ill patients lies largely in a whole range of new drugs now under development.
These new drugs have already changed the lives of hundreds of thousands—if not millions—of people who suffer from mental illness. Lori herself received her final, major push back into the real world from a then-experimental drug, clozapine. In the years since Lori first took the drug, we have learned that the dangers we had at first feared are much more controllable than we had understood. The benefits of clozapine can thus be made available to a much wider range of patients than we had initially expected. Other, newer drugs will expand that range even further.
Physicians, families, friends and the mentally ill themselves can only be grateful for these enormous medical developments. But Lori Schiller's story helps remind us of something we may have lost in our rush to embrace science: Mental illness is not just about drugs and biology. It is about people. It is clozapine that made Lori's final recovery possible. What made her recovery so successful is Lori herself.
I believe that the turning point for Lori occurred long before clozapine came on the scene. It happened during the early months of her final hospitalization when she finally began to face the illness head-on, when she finally became able to say: “I'm very sick. I need help.” It was only then that she was able to take the risk of becoming truly involved in her treatment, of opening up to others about what she was feeling, and of beginning to connect with other people.
Lori's experiences with schizophrenia are at the same time very typical and very unusual. The course the illness took was extremely typical: The onset in late adolescence after an apparently normal childhood; the initial difficulty in finding a correct diagnosis; her own denial, and that of her parents, and their refusal at first to recognize her illness for what it was. The initial failure of treatment is also, unfortunately, fairly typical. The average young person with schizophrenia has, as did Lori, repeated hospitalizations, numerous medication trials and several separate courses of treatment with several different doctors before the illness is finally correctly identified and treated appropriately. Like Lori, many of these people turn in the meantime to illicit drug use in an effort to manage the frightening symptoms.
Her story is unusual, however, in the enormous personal courage she brought to her illness. She didn't fall victim to the prison of repeated substance abuse. Instead, she was able to recognize her problem, and then to stop it. When she finally was able to recognize that she was sick, she let nothing stand in the way of getting well.
She had a lot of support—loving parents, good hospital care, the best possible treatments available. But she would never have been able to return to the kind of life she is living now if it had not been for her own willpower and determination. In a very real way she herself helped conquer her own illness.
Lori's story offers important messages for all of us. For psychiatrists and medical professionals, it is a look at the inner world of a psychiatric patient, a world that we sometimes forget to take into account. It is a reminder that our traditional therapies that aim to reach past the illness to the person inside should not be thrown out even in this era of high-tech medication. In my own experience a connection with another person is a powerful tool for healing in a curing arsenal that also includes drugs.
For the mentally ill themselves, Lori's story offers a glimpse at the possibility that this medication or some other can offer them the same chance at a new life that Lori has had and that they too have a chance of overcoming their illnesses as she did.
For all the rest of us, Lori's story is a moving account of a very personal journey. It is a story not just of mental illness, but of a human being. It is a story of personal determination, courage and hope.
—Jane Doller, M.D.
Clinical Assistant Professor of Psychiatry
Cornell University Medical College
New York Hospital, Westchester Division
I Hear Something You Can't Hear
Lori Roscoe, New York, August 1976
It was a hot night in August 1976, the summer of my seventeenth year, when, uninvited and unannounced, the Voices took over my life.
I was going into my senior year in high school, so this was to be my last time at summer camp. College, a job, adulthood, responsibility—they were all just around the corner. But for the moment I wasn't prepared for anything more than a summer of fun. I certainly wasn't prepared to have my life change forever.
I had been coming to Lincoln Farm for several years, first as a camper, later as a counselor. By day, I shepherded the nine- and ten-year-olds through sailing, canoeing and archery.
At night after the little kids were safely in bed, the counselors would hang out together in the long, low wooden bungalows we called “motels,” playing cards, eating cookies and drinking a Kool-Aid type of concoction we called bug juice. Some nights the older counselors drove us into town to the Roscoe diner. We laughed, told jokes and fooled around.
It was just an ordinary summer, and I was just an ordinary girl. Except that sometime during that summer things began to change.
At first, the change was pleasant. Somehow, without my quite knowing why, everything seemed much nicer than it had been before. The lake seemed more blue, the paddlewheels bigger and the sailboats more graceful than ever before. The trees of the Catskill Mountains that ringed our camp took on a deeper green than I remembered, and all at once the whole camp seemed to be the most wonderful place in the world.
I was overwhelmed by what life had to offer. It seemed that I could not run fast enough, could not swim far enough, could not stay up late enough into the night to take in everything I wanted to experience. I was energetic and active, happy and bubbly, a friend to everyone. Everything around me was bright, clean and clear. And as for me, it seemed that I too was a part of this beauty. I was strong and attractive, powerful and exciting. It seemed that everyone around me had only to look at me to love me the way I loved them.
What's more, my memories became more vivid than ever before. It had been here at Lincoln Farm two years earlier that I had fallen in love. As I thought back to that summer, it too seemed wild and bright and wonderful. I had been in love as no one had been in love before. And the man I fell for was like no one I had ever met before.
He had been an exchange student that year, the summer I was fifteen. He was gorgeous, a real hunk, blond and lanky with bright blue eyes, and a cute little accent. Since I was short and dark, he seemed especially exotic. I really liked him, and could scarcely take my eyes off him. What's more, at twenty-three years old, he was my first older man. I admired him for his courage to come all the way over here alone for a summer, and I was charmed by his sense of humor.
We really enjoyed each other's company. My memories of those evenings became sweetly sad as I recalled talking about being in love, and how terrible it was going to be when he finally had to return home. We even made up an absurd little song to the tune of the Beatles’ “Ticket to Ride”:
He's got a ticket for home
He's got a ticket for home.
He's got a ticket for home,
And won't be back
…
But several weeks later, after camp was over and I had returned home to Scarsdale, he showed up at my house—with a pretty woman whom he introduced to my parents as his fiancée.
As the days went by, I found myself obsessing on that moment two years ago. Gradually, my mood began to shift, and the brightness of the world began to darken. As I remembered the past, the feelings began to blur the present. Then came the dreadful thoughts. Why had he left me that summer? Why hadn't I been good enough? Maybe it was because I really wasn't beautiful, exquisite and passionate. Maybe I was really ugly. Maybe more than ugly. Maybe I was fat and disgusting, an object not of romance but of ridicule. Yes, that was it. Maybe everyone around me, far from loving me, was instead laughing at me, mocking me to my face.
My mood began to turn black. A dark haze settled around me. The beautiful camp turned foul, a thing of evil, not of beauty. All around me were shadows, and I was wrapped in a dark haze.
My memories became so vivid that at night as I lay in my bunk wracked by unhappy thoughts and unable to sleep, it seemed as if I really were back in that summer. In my memory we were again down by the huge, dark, romantic lake. Over to the dockside we could hear the water lapping up against the sailboats and giant waterwheels the kids played on during the day. Late at night, the fireflies were gone, but we could still hear frogs croaking along the banks. The sky was heavy with stars I felt I had never seen before. We sat in the thick grass that ran right down to the water's edge and laughed and talked together.
In my memory, we snuggled and kissed. And then he became more insistent. We lay down together on the top of one of the picnic tables that ringed the lake. His hands began to roam, under my T-shirt, into my shorts. I was excited and worried, terrified and thrilled all at the same time. I wanted more, and I wanted him to stop. We were pushing the limits of my experience and I didn't know how to handle it. In my mind I was back there, rolling and caressing in the darkness, and I was washed over with complicated feelings from past and present—love, embarrassment, rejection, fear.
Then, in the middle of this chaos, a huge Voice boomed out through the darkness.
“You must die!” Other Voices joined in. “You must die! You will die!”
At first I didn't realize where I was. Was I at the lake? Was I asleep? Was I awake? Then I snapped back to the present. I was here at camp, alone. My summertime fling was long gone, two years gone. That long-ago scene was being played out in my mind, and in my mind alone. But as soon as I realized that I was in my bunk, and awake— and that my roommate was still sleeping peacefully—I knew I had to run. I had to get away from these terrible, evil Voices.
I leaped from my bed and ran barefoot out into the grass. I had to find someplace to hide. I thought if I ran fast enough and far enough, I could outrun the Voices. “You must die!” they chanted “You will die.”
Frantically, I ran out to the wide, open center lawn. The grass was wet under my feet. I raced for the huge trampoline where the kids practiced backflips and somersaults.
I climbed on. My head was filled with wild, strange thoughts. If I could jump fast enough and high enough, I thought, perhaps I could jump the Voices away. So I jumped and I jumped, all the while hearing the tormenting Voices ringing in my ears. “You must die. You will die.” I jumped for hours, till I began to see the sun peeking over the hills. I jumped until I was out of breath, exhausted. I jumped until I really was ready to die.
Yet still they continued, commanding me, pounding into my head. They began to curse and revile me: “You whore bitch who isn't worth a piece of crap!” they yelled at me. I tried to answer them, to make them stop.
“It's not true,” I pleaded. “Leave me alone. It's not true.” Eventually, both I and the Voices collapsed in exhaustion.
In the nights that followed this torture continued. In the morning, I was exhausted, drawn and white from fear and lack of sleep. In the dead of night I jumped, pursued by the vicious Voices. Night after night I jumped, unable to sleep, either because of the screaming Voices, or my fear they would return.
As best I could during the day, I kept a calm but distant front. I spent as much time as I could in my bunk. But gradually people began to notice that something was wrong. My cheerful banter vanished, and I could sense that increasingly people were beginning to wonder what was the matter with me.
Finally at 9:30
A.M.
on August 12 the camp owner, worried about my health, instructed a staff member to drive me home to Scarsdale.
Since that time, I have never been completely free of those Voices. At the beginning of that summer, I felt well, a happy healthy girl—I thought—with a normal head and heart. By summer's end, I was sick, without any clear idea of what was happening to me or why. And as the Voices evolved into a full-scale illness, one that I only later learned was called schizophrenia, it snatched from me my tranquillity, sometimes my self-possession, and very nearly my life.