The Quiet Room (32 page)
During the seminars we learned that one in three people would do better on clozapine than on other antipsychotic drugs. Those people who suffered from the most severe types of side effects of antipsychotics—the stiff and twitching limbs—would also get relief from those symptoms. No one was claiming to us that clozapine was a miracle drug. At the same time, they were emphasizing its dangers: About one in one hundred people who took it risked dying from it.
We hesitated. At first we weren't sure who to offer it to. One obvious case was a woman on our unit who suffered badly from side effects. But I wasn't sure about giving it to Lori. No one was promising that it would definitely help people like her, and I hesitated to risk her life on a bet.
In psychiatry there have over the years been many new drugs that have been touted, but which in the end proved to be not much different from the old ones. So I was always skeptical.
Still, by the time the first person had been on clozapine for about a month, I was convinced that it was worth a try for Lori. We had begun to see dramatic results with this other woman. From a stiff, withdrawn, catatonic person, she had become more open, conversational and insightful. Lori was desperate to start a new medication, any new medication, and I agreed to go along. All we needed to do was get her parents’ consent.
Nancy Schiller Scarsdale, New York, February 1989
The longer Lori was in the hospital, the harder I found it to visit her there.
As soon as our car pulled in through the front gate, I would begin: “I'm not going in, Marvin. I'm going to stay in the car.” Marvin was stolid.
“You're going in,” was all he said. He realized, I think, how badly I needed to vent my anxieties.
“I'm not going in, Marvin. I just can't take it anymore.”
When we pulled into a visitor's parking spot, and Marvin turned the engine off, I would sit crying in the cold, dark car. Over and over I sobbed that I was not going in, that I couldn't go in. Marvin didn't say much. He just kept repeating that I was going in, until finally some of my tensions and fears dissipated. I dried my eyes and reached for the car door.
As I walked from the car to the hospital, I kept repeating to Marvin over and over again that I couldn't go through the door. On the landing I said I wasn't going up another floor. Outside the locked door of her unit, I said I was turning back.
I was so tense that the littlest thing irritated me. The wait outside the door for someone to let us in seemed interminable. When the door finally opened, I resented the routine they put us through. We felt like two dummies standing there while they searched through my purse and the bags we brought looking for dangerous materials.
“I know all this already,” I wanted to shout. I knew not to bring in anything glass, or any plastic bags, or wire hangers, or anything made of sharp metal. Especially when the staff member was new, I just wanted to scream: “I've been doing this for years, don't you understand. Years. I know all this better than you do.”
Once we were inside, the visit itself was so painful for all of us.
Sometimes Lori would seem almost well, and it would be the most eerie and frustrating thing. She could carry on a conversation. She seemed like she was with us. Those days, Marvin and I would leave, half seriously discussing with each other the possibility that she was right, perhaps she did not belong here.
But in some ways, those near-well days were the most frustrating for us. She looked so normal that we kept forgetting she was not. When she told us how she had hit a screen, or knocked over furniture, we would yell at her to express our frustration. When we looked at her hands and realized she had been punching things or destroying things, we would yell at her as we would have yelled at our normal daughter.
“How can you do this to yourself?” I shouted at her, when she told me she had refused her medication again. “You're sabotaging yourself. How can you do this after everything you've been through?” I was furious, and let her know it.
Then the very next time, she would be hallucinating and out of it, and I would be filled with such guilt and sorrow. She looked right through us, listening to some inner cacophony. I would grab her face in my hands and pull her right up to mine.
“Look at me, Lori!” I shouted, “listen to me.” But on her face would be the look, the same look that I had seen on my mother's face—the same look we had been seeing on Lori's face all these many years. Would it never go away?
When she herself became angry and enraged I tried to tell myself that she was ill, that it was her illness talking and not my Lori. But when her fury began to spill out of bounds and we had to leave, it cut to my heart. I had to slink out through the unit, with the screams of my daughter shouting “I hate you! I hate you!” following me out into the stairwell.
Coming to visit Lori was hard, but leaving was harder. As Marvin and I walked down to the car we would look up, and there she would be, her white face looking down at us from behind the safety screen. And I would drive down the long drive, crying as I had come, leaving her there locked up behind me.
What was to happen to Lori?
We had grown more and more pessimistic. The roller-coaster ride of dashed hopes over the past few years had been so hard to bear. Every time they tried some new medicine or some new technique, we would see a brief period of improvement. Maybe this was it, we thought. Maybe she's getting better. But every time her body would seem to adapt to the change, and her illness would come crashing back, sometimes even harder than before.
What made it worse was that, unlike earlier in her illness, this time we really felt that Lori was getting the best possible care. Lori was connecting to Dr. Doller and Dr. Fischer as she had never connected with anyone before. What's more, we could see that everyone genuinely cared about her. There seemed to be a real partnership there. When we visited, Rose, one of the mental health workers, would say: “We know how you care about her and we care too.”
“Lori is such an unusual girl,” Sorin would pull me aside to say. “She has such fighting spirit. She is going to get well. We can't let her down.” Yet more and more I felt that we had let her down. She was getting tired and discouraged, I could see that. We were getting tired and discouraged. These days when people we didn't know well asked us about Lori, I was simply evasive. “She's trying to find herself,” I said. “You know how they are at that age.” We weren't trying to hide it anymore, it was just that we couldn't face talking about it more than we had to.
By the time the social worker called Marvin and me in for a joint meeting with Lori and Dr. Doller, we knew that Lori was near the end of the line. We knew they had kept Lori in the hospital longer than they were really supposed to. They had bent rules and cut corners because they were really convinced they could help her.
And they had helped her. She was better, but still not well enough to live alone. We all needed to talk about what she was going to do next. She couldn't come home, that was certain. Dr. Doller and the social worker, both recommended against that. They felt that at home she would drop back into passivity and dependency and never make any further progress toward being her own person.
Marvin and I agreed. What's more, I knew that for my own sake I couldn't have her at home. I remembered the two and a half years she lived at home after her first hospitalization as the most stressful, awful time I have ever lived through. I was always walking on eggshells, always afraid I was going to do something or say something that would set her off. Should we take her out for dinner? Should we let her stay in her room? She was trying so hard to please us, nothing was normal or natural.
I never slept well. I got up every night to see if she was still breathing. I would come home in the evening to find the garage doors closed and I'd be afraid to open them. What would I find inside? I never was sure when it would be for real.
All along the staff at the hospital had been encouraging Lori to enter a halfway house and to join a day program at the hospital. I knew Lori would never do it. She had been there before. She had seen people locked in what seemed to be unending cycles, in and out of hospitals and halfway houses. She didn't want that kind of a life. “I'm not going to keep going through the revolving door,” she said.
So what were our other options?
We could send her to a state hospital, they suggested, adding hopefully that some of them weren't all that bad. Marvin and I just stared. Or we could send her to a nice custodial facility. There was one, a farm in New Hampshire …
So we were supposed to send Lori away to graze like cattle? I remembered the very first doctor we had dealt with, way back at Payne Whitney, who suggested that we put her away immediately. Was this what it had come to after all these years?
They said she had improved. They said she was better. But they hadn't known Lori when she was well. I looked at Lori. She weighed 170 pounds. She was enormous. She was unkempt. Her expression was flat and her eyes were glazed. She bore no resemblance at all to the real Lori. Cousin Sylvia flashed into my mind.
“My God,” I thought. “She'll be sitting on a park bench feeding pigeons.”
It was unthinkable. We had to consider not just where to put Lori, but of how Lori herself would live. For I knew that Lori would not accept for long the bare existence that was her life now, and that these suggestions were offering her.
I could already feel how frantic she was becoming watching her life slip away from her. The reminders were everywhere. I felt them myself. Every time I saw an announcement of one of her classmates’ weddings, I felt sad for what she was missing: Why had this happened to Lori? I thought. When her university held its reunions and annual alumni dinners, I answered for her. “She won't be able to attend. She's out of the country,” I lied. From time to time one of the men she had dated during her first time out of the hospital would call looking for her. “She's not here,” I simply said, and wondered when or if she ever would be.
When we talked about it with her when she was home on leave, she seemed depressed and pessimistic. “I don't have a job. I don't have a boyfriend. I don't have any friends,” she said. Every so often when she was out on leave she would hear about one of her friends from the hospital, or from the halfway house who had killed herself. I knew she was thinking about herself.
When Dr. Doller and the social worker explained the possibility of trying the new medicine clozapine on Lori, they seemed pessimistic. They said it had dangerous side effects. They told us it could kill her. They gave us reprints from scientific journals. Marvin looked them over. It appeared that it was the very sickest patients who got the most benefit from clozapine. There were examples given of near catatonic patients who had responded to the drug.
How many times over the past few years had I wondered why we had fought so hard to keep Lori alive. She was so miserable. She was so unhappy. She was only staying alive to please us. When she ran away and came home, I took her back.
“Why did you run, Lori?” I asked.
“Because there is no hope,” she said.
I took her back. I told her there was hope. But in my heart, I thought there was none. I considered our options. I didn't want Lori to have to live her life the way she was. Was this girl who was so achieving and bright and creative to be doomed to just existing? That was death already.
“You've tried everything else known to man and nothing has worked,” I told them.
“You've got no choice but to try this drug, ” Marvin chimed in. “If it kills her—well, maybe she's better off dead ”
When I heard what we had said, I was horrified. How could any parents say that about their child? But I thought about it and realized we meant it. If this drug didn't work, then maybe she really was better off dead.
Lori New York Hospital, White Plains, New York, March 15, 1989-November 6, 1989
The first day I took clozapine, I felt like I was stoned. An obscure feeling entered my body.
I had been waiting for this for so long. This was my last hope. Was this it? Was this the cure I had been waiting for? Anxiously I watched myself. Puzzling sensations were surging through me.
I started out on a very low dose, 25 milligrams in one small yellow tablet at bedtime. As the days went by, gradually, very gradually, the dosage was increased. Twenty-five milligrams. Fifty milligrams. Two pills at bedtime. Then one in the morning and two at night. Up and up I went, 100 milligrams, 150, 200, 250 ... all the way up to 700 milligrams.
I could barely bring myself to acknowledge any changes that might be occurring. My own emotions were warring within me. I wanted desperately for this medicine to work. I was almost willing it to do its job and free me from my tormenting Voices. Yet I was terrified at the same time. For all I knew, these pills were placebos, and the effects I was feeling were only the product of my own fierce desire to be well.
What's more, I wasn't actually sure I was feeling better. Different, maybe, but not altogether better. In fact, in a lot of ways I felt much, much worse. One of the patients who was supposed to get clozapine before me had been taken off all his other medications, and had flipped out. Dr. Doller didn't want that to happen to me, and so she got permission to start me on clozapine before I had stopped taking the Prolixin I was on. So at the same time as I was increasing my clozapine dose, I was decreasing the Prolixin. The two medications dueled in my body and gave me strange, unpleasant feelings. My chest and throat were tight. I felt like I was smothering.
My emotions too were unchained. In preparation for the clozapine, Dr. Doller had taken me off lithium, my mood stabilizer. Without its help in blunting the swings of my feelings, I plunged into a deeper depression than I had felt in a long time. I felt tearful and weepy, out of sorts and remote.
Something about my depression, my anticipation, my anxiety, my hope, my anguished fears for the future combined to overload all the restraints that Dr. Doller, Dr. Fischer and I had so painstakingly built over the years.