When he came home, we talked endlessly. He blamed himself, and I didn't argue.
I was thinking the same thing. He had been too demanding. He had been too hard on her. While she was growing up, he had been away from home too much. He had been insensitive to her needs. When she had been under pressure, wanted to switch schools, why hadn't he let her?
Through long, sleepless nights, he tortured himself. “It's all my fault,” he said.
And I didn't say no.
Unlike Marvin, though, I didn't blame myself.
I thought I was a wonderful mother. I was working now, and doing very well, selling advertising space for a fashion magazine. But when the kids were growing up, I was home and always there for them. I was the mother with the PTA, and the milk and cookies and the carpool. I had so much time for my children when they were growing up, and I loved them so much.
No. What I tortured myself with were questions. If I had loved her so much, why hadn't I seen this coming? How could I have been so blind?
I combed through my memories of her childhood. Everything had seemed so normal to me, but now in the cold light of this illness, I wondered. Lori had always been moody, especially as she got into her teens. Sometimes she would say she was depressed and fat and had no friends. But then I would talk to my own friends, and they would say their daughters said the same thing. We all chalked it up to hormones. I was often pretty mercurial myself. If Lori was moody too, at the time it seemed normal. But was it? Or was it a sign of what was to come that I had missed? All along, I now realized, I had never really worried about Lori. She so clearly had it all. It was always Mark who worried me. Mark, our middle child, had been shy and awkward. When we moved to Scarsdale, both Lori and little Steven were intrepid. Off they went into their new schools without a hint of self-consciousness. Mark, though, had trouble adjusting.
In high school, Lori was a good student, involved in all kinds of activities, surrounded by friends, and by and large cheerful. Mark, on the other hand, was always depressed, moping around, getting teary-eyed, listening to acid rock and writing poems about death and suicide. It was he, growing up, who kept me awake at night, not Lori. Now suddenly everything was reversed. Mark had blossomed in college, was talking about going on to business school, and was showing every sign of being happy and well adjusted. And Lori was in a mental institution. Where had things changed? What signs had I missed seeing?
And when I finally realized she was sick, was I too passive? Could I have done more to help? In particular, I berated myself for letting Lori be treated by that Dr. Kline. I never met the man, but I hated him. I thought he was awful. I didn't think he was helping these kids. All he seemed to do with Lori was give her more and more pills.
I could see the effects in her eyes. Just a few weeks after she began seeing him, her eyes became glassy and vacant, and she began to move like she was sleepwalking. She put on nearly twenty pounds. Her beautiful complexion began to break out, and her chestnut hair turned gray almost overnight.
Still, I didn't know how bad she was until one day in late spring. I came into the city to visit her often, and on that day I was on my way to meet her. I walked down a street in midtown, heading toward the corner where Lori and I had agreed to meet. As I walked, I passed a street person, a woman laden down with heavy shopping bags. Although it was late spring and very hot, she was wearing an overcoat, hat and boots.
Something about the woman made me look back. When I did, I was horrified. It was Lori.
Why hadn't I stepped in even then? Why hadn't I insisted she go to a hospital right away? I knew something was terribly wrong, but I had been unable to grasp it, helpless to act. Was there anything I could have done back then that could have saved her from the terrible fate she was suffering now?
So all through the summer, I walked that lonely route, up from the subway, past the ice cream store, past the flower cart, past the other sad-eyed parents who looked like me, into the bleak colorlessness of Lori's room. As fall approached I bought her hot pretzels from stands on the street, and pretty sweat suits from Bloomingdale's. Her weight had ballooned up so much, she couldn't fit into her own clothes anymore.
Sometimes she was so sick she kept to her room, huddled up and uncommunicative. Sometimes she was well enough to join the other patients in some activities, like painting and crafts. Crafts! I could scarcely believe it. My straight-A Lori, who had gone to Tufts, nearly gotten into Harvard, and succeeded at everything she did. And here we were feeling grateful that she was well enough to paint designs on plates.
What was wrong with her? We still didn't know. No one was telling us. Did they know? We didn't know that either. All we knew was that they kept trying all the drugs they knew of, and nothing seemed to help. The names of the drugs rang in our heads: They tried lithium for her mood swings. They tried Thorazine and Haldol for psychiatric symptoms. They kept boosting the doses higher and higher. They gave her enough medicine to fell a cow. But nothing was working.
The hospital seemed to be getting irritated with Lori. Why wasn't she responding? And we were getting more and more irritated with Payne Whitney. For one thing, it seemed they were always changing doctors on us. Payne Whitney was a teaching hospital, an offshoot of New York Hospital—Cornell Medical Center, and we kept being seen by earnest young students doing their rotation through a psychiatric clinic.
First there was a young man. Then a tiny young woman. Then another man. Then another woman. Every time they changed, we had to start all over from the beginning: Yes, Lori had seemed normal through most of her childhood. Yes, sometimes she seemed depressed. No, she had never had trouble functioning. Look at her college record! Yes, her troubles seemed to have begun in late college. If we were being put through this agony, we thought, what about Lori? And what were they doing to help her?
Then one day in early July, we met with a young woman. Lori's case was a difficult one to diagnose, she told us. Because of Lori's cycles of racing energy followed by deep despair, the doctors were considering that she had a bipolar disorder, which was another way of saying manic-depression. That made sense to me. I myself have pretty abrupt mood swings, from elation to gloom, although nothing that had ever been debilitating.
But then the doctor dropped a bombshell. Lori, she said, was hallucinating.
Hallucinating? I began to cry.
“I don't understand it,” I said. “I don't understand what's going on with her, and I'm afraid.”
Marvin was calmer. He didn't believe it. He didn't want to believe it. I think he felt Lori was letting her imagination run away with her, and that with a little encouragement, she could control it.
Still, we were both devastated by the news, and by the doctors’ apparent inability to either figure out her symptoms or control them. So when the doctors proposed giving her electroshock treatments Marvin and I went along. We were willing to try anything. And electroshock, they assured us, was nothing like the horror that had been portrayed in the movies. It was a very mild current. Sometimes it provided enough stimulus to the brain to jolt it out of whatever was causing these wild swings. They brought us the papers. We signed them.
They wouldn't let us be there during the shock treatments themselves, so I never knew what happened or what they were actually like. But when I saw Lori in the evenings, she seemed much more subdued. Maybe she was just tired and out of it. But the evenings when she had been treated she always seemed so far away. After six treatments she seemed to be getting better, and she was allowed to do without the full-time nurse. One night we were even allowed a pass to take her out to dinner. But very quickly she relapsed. They shocked her six more times. Then six more after that. It went on and on, July, August and then into September. Altogether she had twenty treatments. Except for the lethargy on the days she had the treatment, we saw no lasting effects.
Payne Whitney, it seemed, was running out of tricks. It was a short-term facility. At first we had taken that as a hopeful sign. She was going to check in, get t
reated and get out. We never thought of the alternative: That she would not get better. That psychotherapy would not work. That drugs would not work. That electroshock would not work. That she would not return home. That she would be moved someplace, to a longer-term facility, where the truly sick patients are sent.
Suddenly that alternative was thrust upon us. One day in early fall, we got a message that the doctors wanted to see us—together. Marvin and I met in an open area outside two offices. It wasn't in an office itself, but more like a waiting room, or rest area, a place where the physicians might relax between rounds. We were both tense. Marvin in particular seemed stiff, standoffish, defensive. There were two people facing us. One was a young woman, the doctor most recently responsible for treating Lori. The other was a young man. I had seen him around before, and he had from time to time been a part of our discussions about Lori's treatment. But there had been so many people, I wasn't clear what his real role was. Maybe he was a doctor. Maybe he was a social worker. Maybe he was a researcher. All I knew was that he was very young, and a stiff, scholarly type who seemed ill at ease.
The doctor began. “Lori has been here for over two months,” she said. “We think we have some better idea of what her problems are now.”
“What's wrong with her?” Marvin and I spoke almost together.
“Because of the combination of her severe mood swings and her hallucinations we think that Lori has something we call schizo-affective disorder.”
“Schizo-affective disorder?” Marvin sounded incredulous. “What's that?”
“It's a combination of things. She's got some symptoms of manic-depression, and some symptoms of schizophrenia.”
“So doesn't this diagnosis just mean you don't really know what's wrong with her?” Marvin sounded harsh. I think he was just shocked. It was the very first time we had ever heard the word “schizophrenia” applied to Lori. Even though they had told us before that she was hallucinating they had said that they themselves felt that could just be a symptom of her manic-ness.
The doctor shrugged her shoulders. “What we do know for sure is that Lori is a very sick girl. This hospital specializes in short-term treatments. Lori doesn't have a short-term problem. We'd like to recommend that she be transferred to another hospital in Westchester. It's also part of New York Hospital, but they do medium-and longer-term treatment there. It's also closer to your home.”
Marvin was immovable. “I find this diagnosis very difficult to accept,” he said in what sounded even to me like a very cool, professional voice. “All along we've been led to believe that she would be getting better very soon.”
“I'm sure you know that her symptoms have continued to be very serious …” the young woman began.
“But just what are her symptoms? I'm not sure anymore what her symptoms are, and what was caused by the electroshock, and what by the medicine. Don't you think that we should take her off all the medications and see what she's like then?”
The doctor was dubious. Lori's problems have more to do with her condition than with her medication, she said. And in any case, since Lori had required so much supervision in the past, any experiments without medication would have to be done in some kind of hospital setting.
“But couldn't we take her home? You know that I am a psychologist. If she needs professional supervision, I could take time off and watch her myself…”
While Marvin and the doctor had been debating, the young man and I had sat silently. Just at that moment, though, he broke in.
“Schizophrenia is a very serious illness,” he said. “It may be a very long time—if ever—before she will get better. She will probably never be able to live on her own again. It would be better for both of you if you faced facts.”
I was in shock. This young man, a person I barely knew, had just told us there was no hope. No hope for Lori. The hospital was giving up on her, and we should too. My stomach was tied up in knots. I glanced over at Marvin, who sat there looking stiff and angry.
There were tears in his eyes. But I, who had spent the summer sobbing, couldn't squeeze out a drop.
Schizophrenia? What did that word mean? I didn't understand it. I didn't believe it. All along they had been talking about manic-depression. When they said schizophrenia I didn't know what they were talking about. What did they mean when they said she was hallucinating? And what did schizophrenia have to do with it?
Schizophrenia meant split personality, didn't it? I had heard about schizophrenia, and I had seen some movies about it. To me, schizophrenia was The Three Faces of Eve , the film starring Joanne Woodward about a woman who had three different personalities that came and went without warning.
How many personalities did they think Lori had? Was the girl who told us she could fly a different personality from the personality of the Lori we knew and loved? Where had this other person come from and how could we make her go away and get our Lori back?
I didn't think to ask those questions. And the doctors just seemed to assume we would understand what they were talking about, or at least accept it without understanding.
Who could I turn to? Marvin was still locked inside himself, and wouldn't talk to anyone. So he couldn't solve problems the way he usually did, by calling around to his friends and colleagues and seeking the best possible advice and information. He was a psychologist. Surely he understood what schizophrenia was. But he was too tormented to explain it to me clearly. Or perhaps he was shielding me from the truth. Once again I felt alone and confused.
I went to the Doubleday bookstore at lunchtime and bought three books on mental illness. To me, mental illness was tragic and upsetting, but the kinds of mental illness I was imagining for Lori had still been rather commonplace. Marvin and I had been devastated by Lori's breakdown, but that's all we had thought it was—a breakdown. People like Lori had nervous breakdowns. She had been under too much stress. She had been depressed. She had been unhappy. Even saying she could fly—it was awful, but if we thought about it as mental confusion caused by stress, we could still understand it. When the stress went away, and her symptoms were treated by drugs, the confusion would go away.
But schizophrenia? The word itself was horrifying.
I started skimming the books while I was standing in line, read as much as I could before I went back to the office, and the rest on the train on the way home.
All my ideas had been wrong. Schizophrenia wasn't a split personality. It was a brain disease, a chemical imbalance. People with schizophrenia did hallucinate. They heard voices commanding them to do things. They heard voices talking about them. Sometimes they had delusions, like that they were the Prophet Elijah, or Moses. People with schizophrenia were very sick. Mostly the disease started in people who were very young, just starting their lives. Sometimes drugs helped get their hallucinations under control. Sometimes drugs didn't help at all. Very often people with schizophrenia didn't get better. Some of them spent their whole lives in institutions.
Suddenly I seemed to understand why they would want to transfer her out of Payne Whitney, to turn her over to some other hospital. All my suspicions were correct. They were telling us there was no hope.
9
New York Hospital, Westchester Division, White Plains, New York, September 1982–October 1982
HOSPITAL RECORDS
Schiller, Miss Lori
Admitted: September 24, 1982
Unit: 3 North
PSYCHIATRIC CASE HISTORY
IDENTIFYING DATA
Date of Birth: 4/26/59
Age: 23
Sex: Female
Race: White
Religion: Jewish
Marital Status: Single
Cultural Background: White, upper middle class, Jewish
Current Living Situation: Alone in apartment in Manhattan
Usual Employment: Insurance Salesperson
INFORMANTS
Patient, unreliable. Parents, reliable.
PRESENTING PROBLEMS
T
he patient was transferred from New York Hospital—Payne Whitney Clinic for long-term hospital treatment of depression, agitation, auditory hallucinations and confusion. Patient's complaint is that she is very confused, which she attributes to Electro-Convulsive Therapy that she received at the Payne Whitney Clinic and that she is hearing voices that tell her to hurt herself and criticize her.
DESCRIPTION OF PATIENT AND MENTAL STATUS
Upon admission, the patient's appearance seemed very normal. Her dress was appropriate. She seemed a little confused throughout the interview … She reported having hallucinations … She appeared to have no formal thought disorder, flight of ideas or circumstantiality. Cognition was difficult to evaluate because of her confusion … Her memory was poor, especially long-term memory. Her short-term memory was a little better.
RECOMMENDATIONS PROGNOSIS AND TREATMENT
Initially it would be important to clarify the patient's diagnosis. Historically she has been diagnosed as a bipolar disorder, but there are conflicting signs that would indicate a schizophrenic illness …
9/27/82 Nursing Note, 10:30 p.m.
Status: Constant Supervision
Lori is having frequent auditory hallucinations, including voices screaming at her, command hallucinations telling her to go out the window and “fly.” She appears in much distress, often covering her ears. She walks near windows but can be easily encouraged to move away. She looks depressed and voices discouragement and anger over her lack of progress. She refused 9 p.m. medications for this reason, “they don't help take away the voices.” Lori did look cheerful when parents visited.
10/1/82 Nursing Note, 11:45 p.m.
Status: Constant Supervision
While opening front door for another patient Lori tried to run out … Lori was caught before she got outside the door. Staff decided to take patient's shoes away and make her wear hospital pajamas.
10/3/82 Nursing Note, 3– 11 p.m.
Status: Constant Supervision
The Quiet Room Page 8
