The Quiet Room (34 page)

Many times I got frustrated by the slow pace. “I want to get out of here now!” I announced to Dr. Doller over and over again. “I'll go live with Steven,” I announced. “I don't care if Mom and Dad are mad. I'll get a job delivering flyers in the city. I'll make it on my own.” But the feeling passed. The clozapine continued its work.

I had no idea how the medication worked. Was it plugging up some hole in my brain that had let all my normal thoughts leak out? Was it going in there like a drill, drilling out some boulder, clearing a path for my real, hidden self to emerge? Was it evaporating the food in my brain that the Voices had lived on? Was it starving the Voices out, leaving nothing but me behind? I didn't know a thing. All I knew was that whatever it was doing, it was helping me feel like a real human being again, a human being who existed in the world with other human beings.

I didn't need to strike out as much anymore. Now, instead of smashing windows, I wrote in my journals a list of the things I found stressful:

pass for a haircut

weekend passes

Dr. Doller on vacation

activities

Dr. Fischer leaving

new therapist?

weight

discharge pending

As much as I hated the slow pace of the discharge, I welcomed it too. As much as I wanted to be discharged, I found the prospect frightening. I knew I was getting better, but I was afraid to test it. I was afraid of being expected to act normal. I was afraid of becoming too stressed out and relapsing.

Still, I stayed with the program. Underneath all the fear I wanted desperately to be better. I wanted desperately to be free. I wanted desperately to begin the life that had been denied to me for so long. There was so much to do before that could happen. For one thing, I needed a therapist. After Dr. Fischer left, people made a number of suggestions. There was a private practitioner in White Plains who might do. There was a doctor Dr. Doller knew. But there was only one person I wanted. When Dr. Doller agreed to be my therapist, I knew I was going to make it.

Next task was to find somewhere to live. Earlier I had rejected a halfway house when my parents and Dr. Doller suggested it. After clozapine it was different. I began to believe that a normal life was possible. And so I agreed to enter a halfway house. In September I had an interview at Search for Change. The last time I had left the hospital I had rejected Search for Change because there was a rumor of a mouse there. This time I wasn't going to let a rodent stop me. This was the place that was going to help me get back into the world again.

Even more than in my last hospitalization, I needed to adjust to doing things on my own. It had been over two years since I last had walked around freely.

Little by little I ventured further and further afield. I walked by myself to the dentist on Mamaroneck Avenue in White Plains. I took another trip into town to get my hair cut. I went with another patient to eat Chinese food. Each trip out caused me anxiety. Just keeping a good hold on myself was an effort. Sometimes I had to take some medication to keep the jittery feelings under control. But each time I went out, I got a little more used to it, and it became a little easier.

I was also coming home regularly, staying with my parents, going shopping with my mom, going out to eat with my dad. I was also getting my things ready for my big move. On one weekend home with my mother, I was going through all my things stored in the attic of our house. Among my old books and papers, my college records and memorabilia, I found my old copy of
Helter Skelter,
the story of Charles Manson's murderous cult. I threw it straight in the wastebasket. His evil eyes would never torture me again.

In the hospital, keys made the sounds of freedom and control. When I was at my sickest, I heard the sound of keys coming down the hall and knew to stop whatever it was I was doing. If I was ripping up dollar bills, I would stop immediately. If I was fiddling with something to use later to hurt myself, I would hide it.

The best key of all was the 9925 key. It was the universal passkey to all the doors on and off the units, to the nursing station, the pantry, the therapeutic activities building—even the Quiet Room. It was the key that Dr. Rockland and Dr. Doller and Dr. Fischer and all the staffers used to come and go from the unit. Patients never touched that key. That key was power. It was the key that opened the locked doors that stood between me and freedom.

Freedom meant loss. In a strange way I had even become fond of this seemingly terrible place. After all, it had been my home for—altogether—nearly four years. I knew the way my bed felt. I knew when the heat came on, and how the place felt in the morning. I knew the times of day when you woke up. I knew when and where to line up for my medication.

I thought about leaving behind all this security. The rules and procedures that had been so foreign to me so many years ago when I had first entered the hospital were second-nature to me now. I was used to community meetings, used to the system of asking for passes. I knew what food was served in the dining room, and how to get seconds and find secret hiding places for the things I liked best.

I knew I was going to miss the staff. Some of them had followed me through all three of my hospitalizations. I thought about the staff who had stood by me, encouraging me. I thought about J.J. and Margo and Jean, who had been with me through the worst. I thought about Rose, who had been my pal. I thought about Barbara, who had given me poems and notes urging me not to give up. Most of all, I thought about Sorin. How was I going to make it without Sorin there behind me? I had a fleeting moment of fear. It passed. I would make it. I would make them all proud of me. I would show them all what I had learned. I would show them all I could make it.

On my last day I was quiet, withdrawn. All the feelings inside me were so hard to control. Quietly and without much comment, I said goodbye to each one, giving each a little gift to remember me by. And then they gave me a gift too. They handed me the 9925 key.

On November 6, 1989, I opened the door to the outside world all by myself, and left the hospital forever.

Epilogue

Lori Hartsdale, New York, 1994

Today when I walk through the doors of New York Hospital, I do so not as a patient but as a teacher. When I walk through the entrance, I might be wearing a stylish linen jacket, slacks, boots and hoop earrings—not baggy warmup suits.

On weekends I work part-time in a gift shop. This isn't a hospital gift shop selling newspapers, candy, gum and flowers for patients. It's a funky place called What's What, selling everything from stuffed animals to designer handbags to mirrors that laugh when you look at them. I enjoy helping people pick out gifts and making neat corners when wrapping packages. I've even worked full-time as a counselor in a halfway house—the same kind of place I lived myself just a few short years ago.

These days I don't live in a bare room with the furniture removed, or even in a community residence anymore. I remember well the day just over a year ago when I moved into my own apartment. After my friends from the halfway house had lugged up the last box and left me alone in my new home, I sat down on the parquet floors. I just looked around me in dazed happiness. I couldn't quite believe I was here at last.

The apartment I live in today is a beautiful place, filled with furniture I picked out by myself, and with food I like in the refrigerator. All kinds of little things about my new life please me. My desk. My floor lamp from South Africa. My fax machine. The fancy tea kettle I keep ready for company. The shower curtain covered with bright-colored fishes. My limited edition animated cartoon art. It's all mine. If I break a mug, it's my mug. I can keep everything neat and clean just as I want it. I can walk around the house in my underwear if I want. The message on my answering machine is my own.

And of course, there's the door. A regular, ordinary front door that opens and closes with a key I keep in my purse. Anytime I want to leave, I do. Anytime I want to go someplace, I drive myself there. I don't need to ask anyone's permission, I don't need to sign out. At last, my life is my own.

I teach three classes at New York Hospital each month. One is for patients and their families on what it feels like to experience schizophrenia. The other is about clozapine. The third is on how to stay well after discharge.

Who would better know than I? For today, four plus years after I left the hospital for the last time, it is I who am in control of my illness and not the other way around.

It's been a long road here.

I spent three and a half years in a halfway house called Search for Change. I had a lot to change. I had a lot of learning to do. After a total of three and a half years in the hospital, I had learned well how to be a patient. I had to learn to be a functioning person out in the real world. Every day I went back to New York Hospital to the day program, which was designed to help former patients make the transition between the hospital and real life. We showed up there as if to a regular job, signed in, took a lunch break and went home at the end of the day. Attendance was mandatory. We had three personal days off and two weeks’ vacation.

We used one another and our counselors to practice behaving normally. At times these groups were so intense that people stormed out in tears. I sometimes was so confused and threatened that I came across as hostile. Gradually, I began taking account of the feedback people were giving me, and started modifying my behavior.

Pretty soon I began to get more used to life on the outside. Following the rules at Search for Change wasn't so difficult. It wasn't such a big deal to make my bed every day before I went out. Doing my chores twice a week became routine. Cooking for nine residents and two or three counselors became a fun challenge. And at day hospital I began to learn one important lesson: how to live without the Voices.

For as the Voices began to recede, something startling happened within me. After years of begging them to go, to leave me in peace with my own thoughts, when they finally did leave, I found to my surprise that I missed them. They had, over time, dissipated into a kind of background static, only occasionally coming back with their full-force chants. I should have been happy. Instead, I felt like there was a neon vacancy sign flashing. My head felt so empty. Without them, I felt lonely.

I began to reminisce about them, to think about them wistfully as one might an old friend who has died. Now that they were mostly gone, I wanted them back. So I brought them back: I willed them back into my life. I turned my mind inward, searching in its dark recesses to find where the Voices lurked and imagined their presence. Hiding among the static I found them. By focusing my attention on them I was able to coax them out. I welcomed them like lost friends. They were horrible, cruel and profane, but at least they were familiar.

This went on for a long time before I realized what I was doing. I wanted to get well. I wanted to live normally. I wanted to relate to normal people as an equal. Yet here I was walking backward, down the road to sickness and madness again. I was choosing my sick Voices over a healthy reality. I must really be crazy!

After that, I began to turn outward more. Part of the problem was that, once the Voices left, there was nothing in my head to think about. The Voices had dominated my brain for so long that they had left no room for any other thoughts. What brain space I had left over all those years was devoted to fighting off the Voices’ overpowering attacks. What's more, as a full-time patient on a locked ward, even if I had had more space to think, I had nothing much to think about. The dreary sameness of my daily life gave no foothold for thoughts to grow and take root.

Obviously what I needed was a life.

So I began to devote my energy to building one. I used every tool they offered me at day hospital. I met with a counselor, usually every week, and together we worked on an elaborate goal sheet.

I had trouble articulating myself verbally in sessions with the other patients and counselors so I practiced giving one piece of feedback per session, and kept up with my writing, which was a helpful form of self-expression. If I overloaded myself with activities and became too stressed, then I set specific hours for each activity and worked on not obsessively exceeding those limits. If I heard the Voices lurking in the background or if the temptation, to follow them back into their world became too strong, I fought them any way I could. I would listen to my Walkman, talk to my friends, take a shower, take a walk, ask for help.

I had been isolated for so long I had to work hard at reconnecting. I was still paranoid, fearful of people, down on myself for my perceived failures. I set myself the goal of deliberately thinking good thoughts about myself, and of checking with other people if I thought they were angry with me.

I had been out of the world for so long that I had no network of friends to fall back on. So onto my goal sheet it went: I will initiate two telephone calls each week to someone outside my family. I also joined the other patients in a social group, going out to eat, going to the movies, going to the beach. I had to practice all over again what it meant to go out and have fun.

For years someone else had taken the responsibility for managing my life. My medications were doled out four times a day. My meals were ready at regular hours. The only money I was responsible for was the pocket money my father gave me. If I was going to make it on my own, I had to relearn how to do things on my own. I got the job as meal planner at the halfway house. I learned how to plan meals and shop. I learned how to put aluminum foil in the bottom of a pan when cooking steak or chicken to make cleaning up easier. I learned how to budget, and to plan how I was going to spend my money. I relearned how to balance a checkbook, something that had once been easy for me. I began to learn how to structure my time myself, without depending on the hospital's routine of medication times and meetings to rule my life. When I arrived at day hospital I was given a pocket calender and began to write down all my appointments and obligations. I even began to take responsibility for my medications for myself. Starting with one day's medications, and gradually working up by adding a day at a time, I learned at Search for Change how to count-out the doses into a multi-compartment box the size of a fat paperback I carry, and to remember to take them religiously four times a day.