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 …
10
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.
“Are you feeling a little hostile, Mrs. Schiller?” Jody Shachnow would say in her schoolteacher voice.
“Hostile?” I was sarcastic. “You might say that.”
Inside, I was even more belligerent. Why shouldn't I be hostile? I thought. You don't know Lori. You don't know what a beautiful, intelligent, charming girl she was. And now she is locked up in your hospital. I don't know what's wrong with her. You don't know what's wrong with her. And now you are treating me like a five-year-old. Wouldn't you be hostile?
Privately, Marvin and I mocked their professionally saccharine voices.
“And how are you tonight?” we would mimic in the car, and then collapse in peals of laughter. It was cruel. They were professionals, they meant well, and they were only doing their job. It was the only laughing we did those days. But at least it was better than crying.
For nowadays, there was no escaping it: Lori was getting worse.
Anyone could see she was hallucinating. Once the doctors at Payne Whitney had told us about it, I began to see it clearly. The staff at New York Hospital was doing what we wanted done. They were trying to take her off as much medicine as possible, to see what her symptoms were like underneath.
Off all medication, her symptoms raged. She was frightened, almost panicked, by what she was hearing inside her head. Sometimes when I would visit, she was able to carry on a conversation. She talked with me about her day, asked me to bring her cigarettes, or batteries for her Walkman. She would be very coherent, and aware of what was going on. Then all of a sudden—boom!—sometimes in the middle of a sentence even, she was gone. Suddenly the disease would take over. She was there, but not there. Her body was still with me, but her mind was far away and lost. She was looking at me, but not seeing or hearing me. She was listening to something else.
Sometimes when we were talking and she would begin to follow the voices in her head, I would grab her by the shoulders.
“Lori!” I would scream at her. “Lori! Pay attention to me. Stay here. Stay with me. Lori! Look me in the eye.”
But when she looked at me, it was always with a secret in her eyes. “I know something you don't know,” her eyes were telling me. It was a knowing, superior look, a look that had in it great distance, and great pity, and at the same time, an enormous amount of suffering. “I can hear something you can't hear,” her eyes were saying.
And then one day, I recognized that look.
When the realization came, it was so sudden and so clear, I wondered why it had taken me so long to realize: I had seen the look in those eyes before. Not on Lori. No, my memories of those vacant eyes were much older than that. I had seen eyes like that—distant, remote, pitying, all-knowing, superior, preoccupied eyes—all the time when I was growing up. I had seen eyes like that on my mother.
My mother!
Suddenly it all made sense. My poor, scattered, bewildered, on-the-edge mother. Looking at my daughter, I saw my mother and suddenly I understood everything that had made no sense when I was a child. Suddenly I understood my mother's strange helplessness. I understood her odd behavior, the behavior no one ever spoke of at home. She was always talking to herself and eating her dinner in strange places. I remember seeing her take her plate into the bathroom to eat before the mirror, studying herself carefully as she took each bite. I saw in a new light the strange spells of false anger that seemed to come from nowhere and be caused by nothing. And her fainting spells that her brothers and sisters said she used to have even as a child— “to get attention” they said—suddenly even those made sense.
Everything fell into place. There were her regular disappearances. Every so often my mother would suddenly leave to visit her “cousin” in Florida—“to rest,” people said. Only I knew what was never spoken about: There was no cousin in Florida. It was a Christian Science healer she was visiting.
Poor people are crazy, they say, and rich people are eccentric. My mother was rich, and so she was allowed to be eccentric. But now, looking at Lori, I realized that my mother hadn't been eccentric. She had been sick. And now I saw that sickness repeated in her granddaughter. For if Lori was schizophrenic, then so was my mother.
With a shock, I remembered the shame I had felt as a child. I remembered my mother meeting my friends, with an odd smile on her face.
“It's so lovely to meet you,” she said in a girlish falsetto, prancing and swirling around like a marionette. Then the sudden fade-outs while she was talking, and the all-knowing, superior grin as she retreated into a world of her own. I watched my friends cover up their snickers, and I wanted to die from embarrassment.
Memories, long buried, came flooding back. Troubling, frightening memories that I had long ago tried to push aside. Memories that horrified me when they came bubbling to the surface. For my mother had not been the only one in our family who was sick, I now realized. Far from it.
I began to think back. Cousin Sylvia. How long had it been since I had thought of Sylvia? Sylvia had been a constant source of fear and embarrassment to me. Sylvia was “crazy as a loon” everyone said when I was growing up. She was fat and slovenly and always wore shoes with holes cut out around her bunions and calluses. She had flyaway gray hair and a triple chin. When she smiled you could see the spaces where teeth were missing.
As a child, I was frightened of this woman. She came every day and sat in the shoe department of my father's store, screaming and screaming.
“They're going to come and take your feet away,” she screamed one day when I came in and put my feet in the X-ray machine to look at my feet in my shoes. I turned to my father, terrified.
“Don't pay any attention to her,” he said. “She's a fat, old crazy cow.”
My mind raced back to Lori. When I had seen Lori on the streets of New York, disheveled and out of control, what had I been thinking? Oh, please, I was thinking when I looked at Lori in the late spring heat wearing her long winter coat and snow boots, and carrying shopping bags, please don't let anyone see her like this. Please don't let them be repelled, point, fear. Don't let them laugh at my daughter. Don't let them laugh at me.
Looking back on that moment, I was aghast. With all my might I had been trying to keep from seeing what was right in front of my face. I had looked at Lori and seen my worst fears. I had seen a childhood full of embarrassment and humiliation. When I looked at Lori, I had seen Cousin Sylvia. I had seen my mother, and my friends laughing at her all over again. I had seen my past. It was something I couldn't bear to see again.
And then came an even more frightening thought. Suppose I was seeing not just my past, but my sons’ futures? Schizophrenia, I had read, ran in families. Clearly it ran in mine. Suppose Lori was not the only child of mine to be afflicted?
As much as I could, I tried to act normally. With Mark, it was easy. He was away at Tulane, and, it seemed, really happy for the first time in his life. He had shaken off the adolescent depression that had so troubled him and begun to blossom as a man. He was doing well in his studies. He had plenty of friends. He was dating a lot. It was apparent he was having a ball, and I was so happy to see that.
Steven was at home and in his senior year in high school. I knew he was devastated by Lori's illness. We all were. Nonetheless, Steven seemed happy to me. He was really funny, and could always make me laugh.
Things couldn't help but change. Up until I had gone to work, and Lori had gotten sick, Steven had been the child to whom I had been closest. The other two had left the house, and Steven and I had spent an inordinate amount of time together. He was my baby, and my life had revolved around him as a mother. Now with nearly every waking minute focused on Lori, there just wasn't as much time to spend with him as before.
Still, as best I could, I tried
to keep up the things we had always enjoyed doing together. We went to museums together, played golf together, and talked about school and life.
I never mentioned my suspicions to my sons. I didn't want them to worry about themselves. They knew that my mother was strange. But I never told them my newly awakened suspicions about her. As for our other relatives, we had never had much contact with them, so the boys were barely aware they existed. In silence, I worried. Mark was twenty-one, and, I thought, more likely to be out of danger from an illness that seemed to strike in the late teens. But Steven had just turned seventeen. Was he going to be next?
We saw what we wanted to see, and believed what we wanted to believe. With enough time, and enough medication, Lori began to grow calmer, and we took it as a sign she was getting better. And we began to push for her release.
Actually, it was Marvin who pushed. My feelings were mixed. Her behavior was certainly improving. Her rages were beginning to diminish under the medicine, and her pacing was abating. She began to appear more relaxed and started to attend some of the hospital activities. By Christmas and New Year's she had calmed down enough to receive passes to walk with us on the grounds of the hospital. In February for the first time since she entered the hospital she dressed in street clothes, instead of the sweat suits she had been habitually wearing. After a time, she appeared well enough to go out to dinner with us, and to spend a weekend or two at home.
What she needed now, Marvin argued, was activity, a job, friends, a social life. She needed things to anchor her to reality, he argued, not to spend her days in a mental hospital surrounded by sick people. Being at home in a familiar setting with both of us there to help her would be the best thing for her, he argued.