Grateful acknowledgment is given to reprint excerpts from the following songs: “Easy” (Lionel Richie) © 1977 Jobete Music Co., Inc./Libren Music.
Reprinted by permission. All rights reserved.
“Winchester Cathedral” (Graham Nash) © Nash Notes. Reprinted by permission. All rights reserved.
“Song for Adam” (Jackson Browne) Reprinted by permission of Atlantic Music Corp./Open Window Music. All rights reserved.
“The Needle and the Damage Done” (Neil Young) © 1971 Broken Fiddle. Reprinted by permission. All rights reserved.
Warner Books Edition
Hachette Book Group
237 Park Avenue
New York, NY 10017
Visit our Web site at www.HachetteBookGroup.com
First eBook Edition: January 1996
Warner Books and the “W” logo are trademarks of Time Warner Inc. or an affiliated company. Used under license by Hachette Book Group, which is not affiliated with Time Warner Inc.
ISBN: 978-0-446-54935-6
Book design by Giorgetta Bell McRee
Cover design by Rachel McClain
Cover photograph by Sally Boon
Contents
Author's Note and Acknowledgments
Foreword
Part I: I Hear Something You Can't Hear
1: Lori Roscoe, New York, August 1976
2: Lori Scarsdale, New York, August 1970” Augyst 1977
3: Lori Tufts University, Medford, Massachusetts, September 1977–June 1981
Part II: I Can Fly
4: Lori Winters New York City, July 1981–March 1982
5: Marvin Schiller Scarsdale, New York, March 1982–June 1982
6: Payne Whitney Clinic, New York City, June 1982
7: Steven Schiller Scarsdale, New York, July 1982
8: Nancy Schiller Payne Whitney Clinic, New York, August 1982–September 1982
9: New York Hospital, Westchester Division, White Plains, New York, September 1982–October 1982
10: Nancy Schiller New York Hospital, White Plains, New York, November 1982–April 1983
Part III: There’ Nothing Wrong with Me
11: Lori Scarsdale, New York, May 1983’August 1983
12: Lori Scarsdale, New York, September 1983–May 1984
13: Marvin Schiller Scarsdale, New York, June 1984-August 1984
14: Lori Scarsdale, New York, September 1984–March 1985
15: Lori Scarsdale, New York, April 1985—October 1985
Part IV: The Quiet Room
16: Lori New York Hospital, White Plains, New York, November 1985—February 1986
17: Steven Schiller Baltimore, Maryland, January 1986-March 1986
18: Lori Futura House, White Plains, New York, April 1986-October 1986
19: Mark Schiller Chicago, November 1986
20: Lori Futura House, White Plains, New York, December 1986–April 1987
Part V: The 9925 Key
21: Lori New York Hospital, White Plains, New York, May 1987-June 1988
22: Lori New York Hospital, White Plains, New York, June 3, 1988-June 9, 1988
23: Lori New York Hospital, White Plains, New York, June 1988-December 1988
24: Lori New York Hospital, White Plains, New York, January 1989
25: New York Hospital, White Plains, New York, January 1989
26: Nancy Schiller Scarsdale, New York, February 1989
27: Lori New York Hospital, White Plains, New York, March 15, 1989-November 6, 1989
Epilogue: Lori Hartsdale, New York, 1994
PRAISE FOR LORI SCHILLER'S THE QUIET ROOM
“Fascinating … informative … Lori Schiller becomes a personable character in her own struggle to find a cure, and we as her audience cannot help but be drawn to her.”
— West Coast Review of Books
“A stunning story of courage, persistence, and hope.”
— Publishers Weekly (starred review)
“The book chronicles her battle with the illness and reveals a woman who, though desperately ill, showed tremendous courage.”
— New York Times
“Harrowing—but ultimately triumphant … a fascinating and hard-fought perspective on a mind under siege.”
— New Age Journal
“This book will fascinate, frighten, and stir our compassion, regardless of personal experience… Written with honesty, courage, openness, and insight … important for all readers interested in the human condition in its many manifestations.”
—Theodore Isaac Rubin, M.D., author of Lisa & David
“One cannot put it down… A terrifying chronicle.”
—Kitty Carlisle Hart
“From the first page, Lori's story touches and holds you… One of the most readable books about the illness.”
— Oakland Press
“A message of courage.”
— Bethesda Gazette
“A dramatic and hopeful chronicle of the horrors of her disease and her escape from it.”
— Harvard Magazine
“Makes frighteningly real the terror of schizophrenia.”
— USA Today
“The story is remarkable.”
— Fort Lauderdale Sun-Sentinel
“Outstandingly written … gripping … a journey that is totally engrossing.”
— Red Rock News (AZ)
“Provides a window into the lost world of those whose minds have betrayed them … contributes insight into the plight of those who inhabit a parallel universe.”
— Gannett Suburban Newspapers
“It's for everyone who wants to know what it's like to have schizophrenia. It's for everyone who can cheer for the parents who never missed a hospital visit, the mental health professionals who never stopped caring, and most of all, the bright and courageous woman who has the guts to tell her story in the hope that even one of the more than 2 million Americans suffering from schizophrenia will benefit.”
— San Diego Union-Tribune
For my
Mom and Dad …
Who never gave up hope.
I thank you …
I admire you …
and I love you.
Author's Note and Acknowledgments
Although this is my life story, I have chosen to tell it not only in my own voice, but also in the voices of others whose lives are interwoven with mine.
The others who speak in this book, from my college roommate, Lori Winters, to my psychiatrist, Dr. Jane Doller, to my parents and two brothers, are among the many people besides me who were affected by my illness. In telling my story, I tried to do the best job I could to show what the experience of schizophrenia is like for the person who is in its grip; in letting the others tell their stories, I want to show what the experience is like for friends and family.
In many ways too these people serve as my memory. My illness and, I believe, some of the treatments I went through have wiped out big chunks of my recollections of some periods of my life. I have turned the telling of those periods over to people whose memories are clearer than mine.
As I get better, my ability to remember accurately and to distinguish fact from fantasy improves. In writing this book Amanda Bennett and I have done the best job we could to make sure that we rendered events as accurately as possible. All the people, places and events in this book are real, and are portrayed exactly as I recall them. With a few minor exceptions all names in the book are real too. Because of their deep involvement with cocaine, however, I have changed the names and other identifying details of Raymond and Nicole. I also changed the names and descriptions of Robin, Carla and Claire to protect their privacy as fellow psychiatric patients.
In the interests of accuracy, we tried to interview as many people involved with my life,
my illness and my treatment as possible. We tried to take their perspectives into account in the telling of this book. Ultimately, however, the final viewpoint is mine.
The only place where my memory still conflicts in any substantial way with external evidence is in my recollections of the events at Lincoln Farm, in the early months of my illness. Chapter 1, therefore, was written from a combination of my best possible recollection of those events; records from Lincoln Farm; and the memories of several fellow camp counselors, my parents and friends of the family. We would like to thank fellow counselor Jackie Pashkes for her special help in enabling us to unearth camp records; Mrs. Beatrice Loren, owner of the former Lincoln Farm, for making them available to us; and Amy Potozkin, another fellow counselor who shared her memories.
A number of people helped us fill in my recollections of the years before my hospitalizations. These include: Lori Winters Samuels, Michele Crames, Dr. Richard Dolins, Janey and Louis Klein, Dr. Philip Moscowitz, Bonnie Smith, Barbara A. Kobre, Tara Sonenshine Friend and Bradford A. Winters. I would especially like to thank Gail Kobre Lazarus for her help and for her friendship, then and now.
Amanda and I would like to thank New York Hospital—Cornell Medical Center, Payne Whitney Clinic, and New York Hospital—Cornell Medical Center, Westchester Division, for making my medical records available to us. Those records helped me to pinpoint dates of events, medications and procedures. They also gave me insight into how other people perceived the events I was experiencing.
We would also like to thank Dr. Otto Kernberg, medical director of New York Hospital Cornell Medical Center, Westchester Division, for making his busy staff available to us for interviews.
Many people contributed their recollections either to this book or earlier during the reporting for the October 14, 1992, Wall Street Journal article that launched this project. For help in remembering the periods of my earliest hospitalization, I would like to thank Dr. Eugenia Kotsis. At New York Hospital, I would like to thank Jody Shachnow, Dr. Richard Munich, Dr. Michael Selzer, Dr. Kenneth Turkelson, Kay Dinoff, and Ronald Inskeep.
For memories of other periods in my life, I would like to thank Eddie Mae Barnes and Rochelle Forehand.
Many people read this book's manuscript and offered valuable suggestions. They include: Lisa Ames, Janet Bennett, Nancy Ehle, Deborah Gobble, Betsy Julien, Shelly Benerofe and Sidney Rittenberg. My kindest thanks go to Anne Schiff, who not only read my earliest manuscript versions, but also painstakingly transcribed them.
For technical assistance and professional help, Amanda and I would also like to thank Mark Berman; Dr. Frederick Goodwin, director of the National Institute of Mental Health; Dr. John Kane, chairman of the department of psychiatry at Long Island Jewish Medical Center; Dr. Carmela Perri; Dr. Daniel Weinberger of the National Institutes of Health; and Dr. Richard Weiner, associate professor of psychiatry at Duke University Medical Center.
At The Wall Street Journal , we thank managing editor Paul Steiger and editors Jane Berentson, Roger Ricklefs and David Sanford.
Our thanks too to our agent, Michael Cohn, and to our wonderful editor, Jamie Raab.
I would like to offer my thanks to the doctors, nurses, social workers and friends who made my recovery possible: Janet Levkoff; Nancy, Carol and Glady; Penny and Michael Horgan, Phyllis Mossberg, Kathleen McDermott, Ron Kavanaugh, Andrew and Susan Sklarz; Nathaniel Goldberg; Maria Tivey; Myrt Armstrong; Julie Alkaitis Hall Houston; a special thank-you to Jacquie Aamodt for helping me out of the quicksand while I was sinking; Debbie, Jeannine, and Rosemary from Sandoz, Deanna at Futura House; Michael Rustin at the Mamaroneck unit of Search for Change and all of his staff; Beth Harris and Luba Spikula from New York Hospital Patient Education, who taught me how to give hope to others through teaching; the special members of the nursing staff at New York Hospital, including J.J., Gladys, Danny, Jean, Margo, Barbara, Cathy, Debbie, Rose, Peter, John, Glen, and especially Sorin Weiss, who kept on believing in me even when I didn't.
Dr. Diane Fischer will always have a very special place in my heart. She opened avenues that I didn't even know were around the corner. Her help in putting together this book—and my life— will always be appreciated.
And to Dr. Jane Doller, of course, my thanks to one of the most wonderful, dedicated, genuine, tuned-in and helpful psychiatrists I have ever worked with. You've taught me the meaning of partnership. Whatever we do, we do together.
I owe a special thanks to Dr. Lawrence Rockland, for the five years of dedication and the care and attention he gave me. If it weren't for him, I probably wouldn't be alive today. We also owe Dr. Rockland an enormous debt for the hours of time he gave in the preparation of this book.
And we would like to thank our families. Our thanks to Amanda's husband Terence Bryan Foley and son Terence Bennett Foley for their patience and understanding.
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
Foreword
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 ar
e 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.