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.
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
P
SYCHIATRIC
C
ASE
H
ISTORY
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
The 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
… patient stated she hears two male voices, can't identify them. These two voices tell her to jump out the window, that she would be able to fly, and also that she should leave the hospital. Patient feels the voices in her head are coming from a “radio inside my head.” Patient also stated she deserves to die because she is no good. Patient feels that dying would end her problem and would make things better for her.
10/15/82 Nursing Note, 3– 11 p.m.
Status: Constant Observation
Patient had a visit from brother this evening. She appeared to be very pleased with the visit. She talked a little bit about still feeling suicidal and wanting to know why, since it was her life why couldn't she end it. She feels she has lived her life already and there isn't anything else to live for. Patient spacey at times. She also talked about her memory loss and [wondered] if it will ever return completely …
10/20/82 Nursing Note, 10p.m.
Status: Constant Observation
Patient stated the voices are constant and tell her to hurt herself at times, other times she states she feels she should hurt herself as well without listening to the voices. Patient also mentioned that she feels she can fly because she feels she flew before. Patient stated she flew 2 years ago when she was in college. Patient stated she went sky-diving. The first time she used a parachute, then second time, the patient stated she went sky-diving without a parachute and landed on her feet. Patient feels that this is not anything magical …
Nancy Schiller New York Hospital, White Plains, New York, November 1982–April 1983
It's funny but I had never really noticed before that there was a hospital back there.
I had never given the long, elegant, tree-lined drive more than a passing glance—even though the big brick entrance gates into the hospital loomed over several big department stores I had visited for years. Saks, Bloomingdale's, Neiman-Marcus—forever, it seemed, I had been shopping, visiting, lunching and enjoying myself all in the shadow of a large, famous psychiatric hospital. It was New York Hospital—Cornell Medical Center, Westchester Division, on Bloomingdale Road in White Plains, and it was there that, on September 24, 1982, Lori was moved by ambulance.
Under other circumstances I suppose I would have been grateful that it was here my daughter had been moved. It was obvious that this was as good as it got. Payne Whitney in Manhattan and New York Hospital in White Plains were both part of the same overall medical center, but even in appearance the two hospitals were completely different.
Payne Whitney was a city hospital, dingy and grimy and overlooking the red-striped smokestacks of Queens, and the roar of twenty-four-hour traffic from the FDR Drive. New York Hospital, Westchester Division, on the other hand, was adjacent to some of New York's wealthiest suburbs, and surrounded by acres and acres of well-kept lawns, graceful old trees and formal gardens. Compared to New York Hospital in Westchester, Payne Whitney was gloomy and badly maintained, with scuffed walls and old motel-type furniture. The public areas of the Westchester hospital were filled with lovely old upholstered chairs, glass-front armoires and grandfather clocks. The patients’ areas were furnished in a light, cheerful Scandinavian style.
The doctors at Payne Whitney wore white lab coats, which made the hospital feel remote and institutional. At New York Hospital, they wore street clothes. And while they were both teaching hospitals associated with Cornell University, here on Bloomingdale Road we somehow felt more in the hands of professionals who were trying to help us than as cases for students to practice on.
Still, we weren't grateful. We were angry. In the last weeks of her stay at Payne Whitney, our anguish at her harsh diagnosis and prognosis turned to rage at the messengers.
When I become angry, everyone knows it. I am mercurial, and my anger, like my happiness, is right out there for everyone to see: What had the hospital been thinking of, I raged, to put us in the hands of doctors as young and inexperienced as the ones we had been seeing? Maybe there were grown-ups working behind the scenes, making sure these youngsters didn't make mistakes— but why couldn't any of them have talked to us?
That young man, who turned out to be a resident in psychiatry, had told us to “face facts” in the same tone of voice he might have used to tell us he was breaking a dinner date with us. Did he know he was talking about our child, our child's future, our child's life, our child's fate? Did he know how parents felt when they heard news like that about their child?
They didn't care about Lori as a person, I concluded. They didn't care about us as a family. Payne Whitney was a hospital filled with a bunch of inexperienced students, and we were their guinea pigs.
Marvin, for his part, became even cooler, even more acerbic—and more demanding. The doctors told us to give up hope. We would not give up hope. They told us they couldn't get her well quickly. We wanted her well quickly. If Payne Whitney couldn't do it, then New York Hospital, Westchester Division, could. Even though New York Hospital offered long-term care, we wanted her out of there as fast as possible.
We took our anger from Payne Whitney, and dropped it right on the staff at New York Hospital.
We had plenty of opportunity to do so.
We had, as much as possible, avoided dealing with the social workers on the staff of Payne Whitney. They always wanted us to talk about our feelings, and the last thing we wanted to do was share our feelings with strangers.
Still, much more even than at Payne Whitney, the staff at New York Hospital focused on Marvin and me. Right from the start, the social worker assigned to our case, a middle-aged woman named Jody Shachnow, began suggesting that we get more involved in Lori's treatment. She suggested family meetings. One-on-one meetings. Meetings together with Lori. Meetings with our sons. Telephone consultations.
I dreaded answering the phone. More often than not it was Jody Shachnow or another of the hospital's social workers on the other end of the line.
It was a new experience for us. We had never had to deal with social workers before. Why should we have? Social workers were nice, well-intentioned people who counseled people whose families were in trouble. They didn't have anything to do with families like ours. But with Lori's illness came a change in our family status. Now we too were a family in trouble, and in need of their help. I cringed when I answered the phone and heard the professionally concerned voice of Mrs. Shachnow on the other end.
The message “face facts” must have followed us from Payne Whitney. Or maybe Mrs. Shachnow had arrived at that conclusion on her own. In any case, we didn't want to hear her message to us: that we weren't “accepting” Lori's illness. By pressuring Lori to get better, she told us with professional kindness, we were denying the reality of her disease. Everyone would be better off, she said, when we came to “accept” that Lori was profoundly ill.
We knew Lori was very sick. But we—Marvin especially—couldn't accept that she was permanently sick, that she would not get better. I could see Marvin's back stiffen at the suggestion. And then he would adopt a professional, detached air, and begin to question the questioners: Had they tried this drug, or that treatment, or consulted this or that person? When he began to act like a therapist himself, the room bristled with tension.
We both seethed at their hints that we stop putting pressure on Lori. Lori worshipped us in a way that wasn't healthy, Mrs. Shachnow said, ever so gently. But inside, she continued, there was anger Lori was repressing, anger that was fueling her symptoms.
She wasn't telling us anything that we hadn't berated ourselves for a million times over. But in a perverse way, the social workers pushed our backs to the wall. As much as we tortured ourselves in the darkness of our own room, we didn't want strangers shoving it in our faces.
When it came right down to it, we just didn't want to talk about it with them. When Marvin was home, we talked late into the night. What had we done with Lori? What could we do about Lori? We wanted information, and medical advice, and insight into her problem. We didn't want to replay it over and over.
So we played little games with the social workers. When Mrs. Shachnow tried to set appointments, we put her off.
“We'll be out of town then,” I said, no matter when the appointment was scheduled for.
We made dates and didn't keep them. When we did show up, we would get lectured about keeping appointments. Then we would be even ruder. I tapped my feet, and Marvin pulled out business correspondence. They asked questions and we gave clipped answers. It was our little revenge. We don't want to be here, we were saying. If you force us to be here, here's what you'll get. We were like petulant children, sitting there with our arms folded, refusing to speak.