I never mentioned Lori to anyone, not even to the professor with whom I was working. Still, people began to associate me with psychology, and psychological issues. Friends started to think of me as someone who could help people with their problems. When a friend's girlfriend started seeming depressed, I was asked to talk to her. I made sure that she didn't have an active suicide plan, by asking her about her plans for the future.
With everything I learned, I thought, I was just one step closer to finding a cure for my sister. And in the meantime, I hoped, I would find out more about myself. For the thought that someday I too might be in Lori's place had never quite gone away.
The winter after I came back from my junior year abroad, I visited Lori several times.
Overall, she seemed far more agitated than when I had left. She had big scabs on her hands from where she had cut herself banging on the window screens. She showed me a big hole she had pounded out of the wall. She talked about losing it, and how many guys it had taken to hold her down. At times, she seemed almost in awe of the impressive numbers. Sometimes we sat on the bed and she would suddenly drift off, seeming to retreat into a world of her own. At those times, I now realized, she was hallucinating, and I waited uncomfortably for those moments to pass.
Sometimes she was very drawn, dragging herself around like a zombie. But on other days, she would seem much better. Sometimes we played pool, or listened to music or just talked. On those days, she often focused on her status.
“I have to get my status up,” she said. It was clear that in the hospital everything that related to your quality of life came from your status.
We seemed much closer than ever before. I had spent my junior semester abroad at the same place she had been six years earlier, so we had that in common. While I was in England, I had taken up smoking, because I thought it was European and cool. I brought her Silk Cut cigarettes that I had bought in London. She liked them, and going to the smoking room gave us something to do together, and something to talk about.
She told me her troubles. Sometimes she pleaded with me to get her out of here.
“I can't do that, Lori,” I said. “You know I can't do that.” I tried to get her to focus instead on what I could do to make her life easier. Could I come visit her more often? Call her from school? Bring her anything from the outside?
My psychology studies gave us something else to talk about. I tried to talk to her about the different symptoms she had, the medications she was using, and the side effects she was experiencing. I looked up every drug she was taking, and talked with her about what they did and how. By observing her shaking hands and the involuntary movements she was making with her tongue, I diagnosed that she had some tardive dyskinesia, one of the side effects of the antipsychotic medication she was taking. I wrote a paper on lithium and, as part of my research, talked with her about what effects it was having on her.
I was convinced we were going to find a cure for her. But then one visit something happened that changed my mind about becoming a psychologist at all.
Lori and I were sitting and talking when, all of a sudden, I heard loud voices down the hall. One of the patients was having an argument with one of the orderlies. The patient was an older dark-haired woman, maybe in her late fifties, very drawn, wearing a man's dress shirt that hung almost to her knees. She was wearing socks, but not shoes. I knew what that meant. Lori had told me that her own shoes used to be removed as a precaution against running away.
The woman patient was screaming and shouting profanities. The orderly was speaking calmly and firmly. He was telling her that if she didn't control herself, she was going to have to be put in the Quiet Room. I looked at Lori. She was turning white.
Then, down the hall, the patient lost control. She lunged at the orderly, flailing and hitting. Other workers saw it, and rushed to his aid. Someone hit the emergency button, and it was pandemonium. The other patients were getting agitated, standing up and pacing jerkily around, or wringing their hands. I could tell by her face that Lori herself was getting more and more upset. I was upset myself. There was running and screaming, and bells ringing all over the place.
Everything seemed in turmoil. Lori began pushing at me.
“Go! Go! Go!” she yelled frantically. “Get out of here! Get out!” And suddenly hands were behind me, I don't know whose, pushing and tugging me toward the door. Then just as suddenly I was no longer on the unit, but outside it, standing on the landing in a stairwell, facing a locked door. From outside, I could still hear the emergency alarm ringing, and the sounds of running and shouting, but now it sounded far away. ’
I was shaking. Lori had told me about this kind of thing before, but I hadn't realized what she had meant until I had seen it myself. Sometimes that kind of thing happened to her too, I realized. All the old fears resurfaced. That commotion I had just seen could have been my sister.
It could have been me.
I didn't stop shaking until I got home. And somewhere along the way I realized that if this was the reality, I still couldn't face it. If someone was going to find a cure for Lori, it wasn't going to be me.
18
Lori Futura House, White Plains, New York, April 1986-October 1986
The more wild and out of control I became, the more the doctors and nurses and social workers reached for their trump card: the state hospital.
Time and again my doctor sat me down. “We can't keep you here forever, you know,” the psychiatrist warned. “You don't want to have to go to a state hospital, do you? ”
I was terrified of state hospitals. I had never seen one, but I had heard all about them. They were grim and depressing. They were where people went forever. Every time they threatened me, I made an effort to control myself. But sooner or later the pressure built, the anger of the Voices rose, and off I would go again.
For another two months the cycle continued. Crises. Quiet Room. Threats. Calm. Then another explosion, more time in the Quiet Room, more wet-packing, more talks with the psychiatrist, more threats of the state hospital.
Finally, their patience wore thin when, just after one state hospital threat, I punched out a window during a fire drill. That was it, they said. They could do no more for me. I was going to be discharged immediately.
For months and months, all through my hospital stay, I had been agitating for this. Now, suddenly, with their ultimatum, I panicked. Leave the hospital? What was I going to do? How was I going to exist? Suddenly I realized that, while I hated being in the hospital, at least I was safe there from hurting other people or hurting myself.
Give me a little more time, I begged them. Just a little more time to get used to going outside, to make some plans, to find somewhere to go. I was resentful, fearful, almost panicked at the thought of being pushed out of the hospital. But somewhere, deep inside me there was born the tiny, flickering germ of some insight. Perhaps I was sick after all. Perhaps I did need some help.
I tried to clean up my act as quickly and as completely as possible. I tried to obey all the rules, to attend every community meeting, to take my medication without protest. And I tried to endure silently the fear that accompanied the raging Voices. It was my will against theirs: I held firm and refused to heed their commands, refused to become lost in their screaming, refused the relief of screaming myself.
Slowly, I began earning off-unit privileges. I walked one day, alone, to the dental clinic to have my wisdom teeth extracted. Back again, without incident. I began attending therapeutic activities with the other patients, and participating in a cooking group. I started going for walks with other patients and a mental health worker and then on my own. Then came passes off the grounds. I went with another patient into White Plains to see a movie. The very next day I went shopping. Then a weekend home with my parents.
Meanwhile, we were all discussing where I should go. All along I had refused halfway houses, or day hospital programs. Now, however, I went along with their ideas. My dim new self-awareness told me that I c
ouldn't survive otherwise. I couldn't go back home and take care of myself. I couldn't face a day without structure. For the first time since the Voices leaped into my life so long ago, I was beginning to realize vaguely that I needed help.
A day hospital program would give me somewhere to go during the day, as well as therapy and guidance. My hospital treatment team, Dr. Rockland and I all agreed that the day program at St. Vincent's Hospital in Harrison was best for me. The halfway house I chose, Futura House, laid down ground rules: I had to be out of the hospital for two months, and on my best behavior for that time, before they would permit me to enter. My reputation had preceded me, and they didn't want any troublemakers. When I was discharged on March 21, 1986, I set myself a challenge: to get into Futura House early. With that goal in mind, I was a model of good behavior. So five weeks later, in late April, I moved into Futura House.
My doctor on the unit and the social worker congratulated themselves. Their plan had worked. My bad behavior had turned out to be just that—bad behavior. Their threats and entreaties had pushed me into getting “better.”
Only I knew the cost of my newfound appearance of health. I felt caught in a crazy bind. On the one hand, after many long years of therapy I was beginning to understand the importance of expressing my feelings and thoughts. On the other, expressing the way I really felt to a psychiatric team meant being locked up in a loony bin forever. I couldn't act on anything that was really in my brain. If I dared to, I'd be threatened with a state hospital. Either way, I would lose.
Everything they did to me in the hospital was a form of control. Medicine helped contain me, but not my thoughts. Sodium amytal helped mellow my behavior, but did not tame my brain. Cold wet packs restrained my impulsive and explosive behaviors, but did not muffle all the clamor and upheaval going on inside.
And as for my newfound “cure,” that was all a matter of control too. Everyone needs to breathe, but people can still hold their breath underwater. If you practice, you can hold your breath for much longer than you ever believed possible. That's what holding my Voices inside was like. Sure, I could hold it for a few seconds longer. But the explosive rage was building inside all the more for not being allowed to be expressed.
If you go underwater, and take a big breath and hold it in longer than you think you should, when you come up for air you will be gasping for breath, and more desperate for air than if you had come up sooner.
Futura House was actually two apartments in a building in White Plains. One apartment was for men, the other for women. There were nine of us women in our house, three in a triple room, and six divided up into doubles.
Despite our formal cleanup schedule—we each had our own tasks to perform, from vacuuming to scrubbing bathrooms—the place definitely looked lived in. It was kind of tattered and messy all the time.
We shared cooking duties too, and all ate together at one long table, family style. I didn't really like helping to make dinner, so when it was my turn, I'd pop a couple of packages of frozen fish sticks in the oven and serve it with a side order of warmed-up Tater Tots.
My biggest problem was learning how to fill my days. My hospital days had been filled with aimless pacing. My real-world days had to be more structured than that.
Every day I made a fifteen-minute drive over to North Street in Harrison to the day hospital. I left the halfway house every morning at 8:45 to be there by 9:00. The morning was filled with nonsense. We had art therapy, assertiveness training, group therapy, and classes in leather, wood and jewelry working as well as grocery shopping and cooking. I felt they treated us like morons. I'd sit for forty-five minutes sanding a piece of wood. Then a staff member would give me the okay to sand another piece of wood.
I had lunch there every day—every day an ice cream sandwich—and by 1:45 it was over. Then my problems began. How could I spend the rest of the day? Because Futura House wanted us to find meaningful things to do with our days, the house was closed and locked between 9:00 A.M. and 4:00 P.M. SO what was I to do with my time?
While I was in the hospital, I had insisted I would return to work at Rye Psychiatric. After I was released, though, I decided not to even try. There were too many staffers from New York Hospital who moonlighted there. I didn't want to keep bumping into people from my patient days. What's more, after I had been hospitalized for a while, Eddie Mae Barnes had, with my permission, announced to the staff where I was. They sent me flowers, which I appreciated. But now I felt uneasy going back knowing that they knew. So that left me with nowhere to go, and nothing to do.
I tried to do something fun, like getting my hair done. My mom promised to pay for my appointment if I wanted to improve my appearance. But I couldn't get my hair done every day. And besides, somehow the hairdresser managed to let me know, subtly, but nonetheless clearly, that in my porked-out state I was never going to look like a movie star no matter how many perms he gave me.
Mostly, though, I just went home. I'd get in my car at the day program, drive to Scarsdale, climb right into my old bed in my old room, and stay there until Futura House opened up again in the late afternoon. My dad and mom were both working. My dad never came home early enough to find me. And on the few occasions my mother did pop in, I tried to charm her. I complained about the rules that had locked me out until late afternoon, and the fact that I had nowhere to go.
“I didn't think you'd mind if I came here.”
Surprisingly, she didn't seem to.
But before too long Deanna, my social worker, got wind of what I was doing, and she did mind, a lot. After that I was forbidden to go home, except on weekends.
A couple of times I tried using my key to sneak into my room at Futura House, popping out after 4:00 P.M. when it was safe. But mostly I just wandered about aimlessly. Usually I wound up in the park across from Futura's apartment building, sitting on the benches talking to the bums, the crazy people, the bag ladies and druggies. We talked mostly nonsense. But still they fascinated me, especially Isaiah, a tall man who wore white robes.
When in a burst of candor I described my new friends to Deanna, she hit the roof again. The park was off-limits too, she said. Together she and I worked out a new plan. I was to remain at St. Vincent's Hospital until 3:00 P.M., and then spend one hour in the library before coming home.
My new day just underscored the meaninglessness of my whole life. At St. Vincent's I watched the end of a soap opera, knowing nothing about the plot or the characters, and caring even less. Then I watched a half hour of Tom and Jerry cartoons. Then to the White Plains library, where I took out books on anatomy and physiology and hid them in the shelves, pulling them out when I arrived, and poring intently over them a page at a time until my hour was up.
And then sometimes I would stop at a bakery in White Plains. There I would sit, eating a bagel with cream cheese and lox. I looked out the window, and wondered why I got sick. I felt so alone. Life just didn't seem worth it. All by myself in a world of billions of people.
The more I began to realize I was really sick, the more I became aware of the vast gulf separating me from everyone else, and the lonelier I became.
My old college friends Lori Winters and Tara were still off doing their own thing. Gail was caught up in her home and her husband. My brother Mark was in Chicago for his new job, and Steven was at college. I was even feeling distant from Mom and Dad. They didn't come very often to visit me at Futura House. I felt they were ashamed of me, their freak daughter. I went to visit them at home, often hanging out all weekend with no particular purpose. But I wouldn't go to the country club with them to be scrutinized by all their cronies the way I was the last time I came out of the hospital.
I resumed seeing Dr. Rockland. But nothing in our sessions did anything to overcome my loneliness. Despite meeting three times a week, I didn't feel that we were getting anywhere. I felt he cared about me. I felt he wanted me to get well. But somehow we just weren't clicking together. We continued to have long silences punctuated by discussions
about medication.
As for my fellow residents at Futura House, I just couldn't relate to them. My roommate was as involved in music as I was, but her tastes were unbelievably old-fashioned and nerdy. She was mostly hooked on Broadway musicals, which she played over and over and over again. I felt she was torturing me.
I mean, how many times can you listen to “The Impossible Dream”? “Oklahoma”? “If I Were a Rich Man”? The King and I? West Side Story? And Annie. By the end of the day, I wanted to smack that twerp Annie.
When I got my turn, I put on the most intense songs I could think of, like Pink Floyd's “The Wall,” fierce music about rebellion, pain, suicide and death. I played them loud, until she finally left the room with her Pollyanna music and gave me more quality time with my own wild strange brand of tunes.
Many of the other women were quite talented. One was a superb artist, her work hanging in local galleries. One woman played the piano. One knew how to cook. One had been out of the hospital and holding down the same job for years. They all seemed more adept at relating to other people than I did. I envied the free and easy way they had of talking with the staff people.
I didn't seem to be able to relate normally to anyone. Instead, I engaged them in a continual game of “Can you top this?” What else did I have to offer or make intelligent conversation about? I saw my psychiatrist three times a week, more than any of them did. So I offered that as conversation. We swapped stories of the times we were sickest. I talked about cold-wet-packing. Someone else talked about eloping to Boston. I talked about liquid Thora-zine burning holes in my tongue, someone else would talk about cheeking her medicine for a week.
In the end, I just couldn't deal with them. I plopped myself down on the couch in front of the TV. The Voices were shouting at me so that all I could do to try to muffle them was turn the TV volume up loud and giggle uncontrollably. I sat on the sofa and laughed and laughed and laughed to myself until my fellow residents rebelled. They didn't understand my pain at all. They just wanted some peace and quiet. So I felt all alone, with no friends, no one to talk to, no one to help distract me.