“Is it possible that you are feeling angry with me?” she would say. And slowly, gradually, I would begin to be able to realize that I had been angry because she had been late to session, or jealous because I had seen her talking to another patient.
If I couldn't make the Voices go away, then at least I could get to the powerful emotions that were underneath, Dr. Fischer and Dr. Doller said. So I practiced letting out that anger in different ways, hoping to funnel off some of the fuel that fed the Voices. With the two doctors tutoring me, I tried to learn to identify my anger and express it in words before it turned into a full-blown crisis of Voices.
Sometimes that had led to some strange triumphs. I wrote in my journal:
I made progress today. I called Dr. Doller an asshole behind her back and not in the Voices’ words. In other words, I got angry on my own.
As time went on, I tried hard not only to understand, but to make myself understood. I tried to explain as clearly as possible to Dr. Doller about the compartments in my brain. When all the individual compartments were closed, I was safe. When one or more compartment drawers were open even slightly, evil would seep out of one of them and villainous thoughts out of another. Pretty soon my mind would be a mess, everything scrambled together like broken sunny-side up eggs. The chaos of the evil seeping from the compartments would be just too overwhelming for me to bear.
I also made up a system to help Dr. Doller judge the strength of the Voices tormenting me. It was so hard for the doctors to tap into my brain and understand how bad I was feeling. So I came up with a 0 to 3 rating scale. Three was so consumed by Voices that I was overwhelmed. Zero—which hardly ever happened— meant no Voices at all.
Dr. Doller and I would be sitting down on one of the halls on the unit and she would ask me how the Voices were.
“Well, Doc, I'd give it a one.” That meant I was feeling relatively okay. When, later in the day, I would report to her that the Voices were climbing into the 2 plus range, and I was beginning to panic and feel suicidal, she would remind me that only a few hours earlier I had been feeling much better, and that I would feel better again.
I even mastered the Quiet Room.
The last time I was in the hospital the Quiet Room had been such a frightening, terrifying place. Every time I had been sent there it had seemed like punishment for misbehaving. This time everyone talked to me over and over again. The Quiet Room isn't a place for punishment, they said, and it isn't the enemy. If you can go there on your own you can calm yourself down.
How could I believe them? I had seldom gone there without being carried. Often I had been in there out of control and screaming until I was dragged out into a cold wet pack. Go to the Quiet Room voluntarily? Now who was crazy?
But still, they persisted with their almost monotonous chant. Come for help before you are out of control. Ask for medication. Use the Quiet Room. Work with us, they said. Work with us. Gradually I became able to listen to them.
The first time I tried walking into the Quiet Room on my own, I was trembling. This was it. This was what I had been taught to do. I could feel the rage and pain building up inside me. “Don't go! Don't go!” the Voices screamed. “You'll die there! You'll die there!” they cried. I paused. Was I going to listen to the staff or the Voices?
Suddenly, I decided. Fuck the Voices. I was going in. At first it seemed like a whirlwind. There was so much stimulation in my brain all at once, it seemed I was breaking apart in all different directions. There were Voices, sights, thoughts, feelings. I wanted to scream but nothing came out. My heart was out of control in my body and my hands were shaking. I couldn't swallow. I couldn't breathe. Too much was happening.
Finally out of mental exhaustion I collapsed. But I relaxed. The more times I marched myself into the Quiet Room the easier it was. The Quiet Room became a place to chill out and deescalate, rather than to be punished. Finally, the Quiet Room really became quiet.
Nearly everyone agreed I had made real progress. But progress at what cost? Simply keeping the symptoms in check was sapping all my energy and exhausting me. And the Voices were still always with me. Their pummeling talk of hellfire and punishment was my constant companion. In addition, their crazy crooning had taken on a sensual, voluptuous quality: “Talk to us, darling little cunt,” they whispered. “Talk to us.”
Sounds echoed through my head like thunder. There was a hailstorm in my brain, with tornado winds knocking down telephone poles and trees. I heard bomber planes overhead and braced myself against their destructive roar. I was overwhelmed by every sound I heard around me. I couldn't tune out any noise; each one pounded my brain with equal intensity. Traffic. The wind. Water flowing down a sink's drain. Birds. Windows opening or closing. They all rattled in my head like artillery fire.
But the worst torment these days was not the things I heard, but rather the things I saw. I saw fire, lightning, colored bolts of light. I saw people hanging in the window, and body parts hanging from the trees. I saw fire around people and walls and faces. Sometimes I felt I had projector eyeballs, shooting things and shapes and colors straight ahead of me. Sometimes I saw things as if they were movies floating before my eyes. Sometimes I saw things that looked as real as my bed or my lamp or my tennis shoes.
I couldn't sleep at night because of the creatures in my bed. I sat at my desk writing in my journal one night because I was afraid to go near my bed. “There are four of them sitting on the bed,” I wrote.
Usually I saw creatures with faces that were like the scariest Halloween mask ever made or creatures with big blubbery, hairy, slippery green faces. But sometimes I saw people I recognized. I saw the face of my parents’ friend Dr. Arnie Maerov melt into a caricature. Why him? Was it simply because he was a psychiatrist, or because he was a friend of my parents? I saw my seventh-grade science teacher, Fred Zaltas. I had had a crush on him when I was thirteen, but I hadn't thought of him in ten years.
I saw my childhood Jerry Mahoney doll. Jerry was like my pal. I played with him, acted out fantasy conversations with him as if we were really friends. We entertained people as I had back in another life so many years ago. We made people laugh. And then he too melted like syrupy wax into a gruesome ghastly figurine, almost like a three-dimensional mind puddle.
And then I saw Charles Manson, staring at me from the walls of my room just as he had once stared at me from the front page of the newspaper back in California when I was a child. He penetrated my entire mind and body with his fierce and frenzied eyes. Patients in the hospital mocked other patients who seemed to have a psychotic stare. But no patient that I had ever met had about him the look.that Charles Manson did. His eyes were stilettos piercing through my soul. I couldn't escape his gaze. Every time I tried to look away he commanded my eyes to stay fixed on his. I was unable to break his psychotic stare.
I screamed in terror. The staff on the unit came running to my rescue. I couldn't do this alone. My fists had already begun pummeling against the wall. I heard sick laughter coming from everywhere, and realized it was me. The nurse in charge gave me a pill to swallow. I was out of control. I knocked the cup to the floor. Time meant nothing. Suddenly I was being held down on the Quiet Room mattress and given an injection to make the faces go away. I drifted into sleep and when I awoke Charles Manson was gone.
I had come to believe that my Voices were just a part of me. But I still had a terrible time distinguishing them from reality.
On one freezing night in January, I heard a baby crying outside in the courtyard. It was sobbing away, and wouldn't be still. The more I heard it, the more upset I became. I went to the nursing station.
“There's a baby outside,” I said frantically. “We've got to go save it.”
The nurse on duty was sympathetic. We went to the window where I heard the sounds.
“I don't hear anything, Lori. I don't see anything out there either. You're hearing things, Lori. It's not real.”
I got more and more agitated. “It's a baby out there. I
can hear it. Why can't you hear it?” I demanded to be taken outdoors to look, but the staff refused. It was too dark and cold out there, they said.
Too cold? Couldn't they understand? That was just the point. It was ten degrees outside. How could they leave a crying baby out there in the snow? I decided to take matters into my own hands. There were pay phones on the units that patients could use to call home or their friends. I called the police instead. I insisted they come and investigate the crying baby.
When he heard where I was calling from, the officer on the phone grew skeptical.
“Are you staff or are you a patient?” he asked.
“I'm a patient,” I said. “But I'm not one of the crazy patients. I'm completely sane, and I hear a baby crying, and you'd better get down here before it's too late.”
He asked to speak to the nurse in charge, who explained that I was hallucinating. When she hung up, she turned to me.
“Lori, there's no baby out there, but if it will make you feel better, we'll get hospital security to come and check around for you.”
Of course no one found anything out of the ordinary.
Despite all the progress I had made, how could I go out and live in the world when I couldn't tell what was real from what was not real? How could I face the world locked in a mind that had a life of its own?
What's more, even my body was not my own. For under the influence of the medications I had gone from porky to really obese. At five foot three, I weighed nearly 170 pounds. I felt like a beached whale when my weight had swelled to 130 pounds from my customary 115. At 150 pounds I looked like one. At 170 pounds I refused to peer into the mirror for fear that this blob would look back at me.
I tried to lose weight by starving myself. I didn't eat solid food, and kept myself full by chugging down Diet Cokes. Every Wednesday morning, weigh-in day, I dressed in the lightest clothes I could find and presented myself without shoes on.
But somehow I never lost weight. When I zipped up my jeans, I broke the zipper. My blouses gapped. The sweat suits my mother brought me to wear in lieu of real clothes were great in the winter, but in summer I sweated to death in them. In a family—and a world—that valued thinness and saw fat as a failure of will, how could I explain that the medications had taken over my body the way the Voices had taken over my brain? How could I walk around with this sign of my illness stamped on every line of my body?
How could I go out and live in the world when I had no life?
I knew that in conferences they were talking about halfway houses for me, ones like Futura House, where I could live under supervision. But increasingly I heard talk of a state hospital. I knew New York Hospital wouldn't keep me forever. My worst fears looked like they were about to come true. The state hospital that everyone had threatened me with when I was “bad” was now looking more and more like a possibility, even though I had done my best to be good.
I couldn't live in a state hospital. I knew if that was my only alternative that sooner or later I would kill myself. For real this time. Others seemed to sense it too. One evening, when I was talking to Sorin about killing myself, he grew very serious.
“If you decide you have to kill yourself,” he said, “in the last second before you act, picture my face. Listen to me giving you one last plea not to do it. And know that someone really cares.”
1-21-89, Sat., 8:25 P.M.—I can't tell from which direction the sounds are coming from. It's eerie, real spooked out, and scary—threatening. I've got to get better already. I need new medication or something. I've got to come up with a prayer for me so I, too, can have a miracle.
There was only slight hope left.
It was a new medication. I had heard buzzing about it in the hospital for months. It had been used in Europe, but it wasn't yet available in the United States. Two patients in New York Hospital were being offered the drug on an experimental basis. I wanted it too.
I hadn't had much luck with medication so far. I had been on nearly every antipsychotic medication and nearly every antide-pressant and nothing seemed to work.
I took pills for psychotic symptoms, pills for mood swings and pills for anxiety. Because nothing had ever really given me long-term relief, the doctors were constantly trying me on something new. I went from one antipsychotic medication to another. Na-vane. Stelazine. Mellaril. Moban. Haldol. Nothing. Nothing. Nothing.
The same went for the antidepressants. When lithium didn't seem to be effective enough against my depression and my manic highs, the doctors tried attacking the depression alone. They tried MAO inhibitors. When the MAO inhibitors didn't work they tried tricyclic antidepressants. When the tricyclic antidepressants didn't work, they went back to lithium and tried increasing the doses.
Was the problem the dosage? Raise the dose. Lower the dose. Was it the combination of drugs? Try Prolixin with lithium. Try Thorazine with one of the MAO inhibitors. Maybe one combination or one dose would do the trick. Try Mellaril for psychosis and Xanax for anxiety.
And then there were the minor tranquilizers, dispensed as needed to blunt the anxiety attacks that caused my throat to close, my chest to cave in and my heart to pound so that I couldn't hear myself think. Valium, Xanax, Ativan, Klonopin … they all took the edge off, but they were addictive, and so had to be changed all the time.
I knew these medications mainly by their side effects. Some antipsychotic medications made me drowsy. Some blurred my vision. When I took Thorazine I felt like a zombie. My face looked like the frozen mask of someone who had been dead for weeks. I shuffled down the halls and my mind was a shadowy cloud. I was constipated and had terrible trouble with urinary retention. It gave me an appetite like a lumberjack and caused me to gain weight like crazy. My mouth was so dry that my lips would get stuck on my gums. Haldol didn't help the symptoms, and the side effects were horrible and scary. The intense, uncontrollable backward muscle tightening made me feel like my head was being screwed off—like Popeye when Bluto socked him.
Lithium, a mood stabilizer, mellowed out my highs and woke me up out of my depression. It also enlarged my thyroid gland, made me feel thirsty and nauseated and gave me diarrhea. Because lithium was potentially toxic, my blood was drawn as often as three times a week in the hospital to make sure I wasn't being given too much.
The horrible and frustrating thing was that each time my medication was changed, I did feel some relief. For a few days, sometimes even for weeks or months, the Voices would begin to abate. I would begin to feel calmer. My sessions with Dr. Doller and Dr. Fischer would be more productive, and my ability to relate to them would improve. My journal notations would change character too, and optimistic feelings would creep into my private screams of despair. For a short time I would believe Dr. Doller's messages of hope.
And then it would all come crashing down on me again. Had the drug worked briefly before my body got used to it? Had I simply wanted so badly for some medication to relieve my pain that I had willed it to be so?
I didn't know the answer. All I knew was that each time it happened my despair intensified. I felt I was getting worse and worse with each trial of new medication. I felt like a tree being cut down. The more the doctors and medications hacked away at me, the closer I was to falling.
This new medication sounded different. I heard talk that it was helping people that no other medicine had helped before. Some of the things I heard sounded scary too. Some people had died taking it. Here in New York Hospital, one patient had flipped out big-time while preparing to go on this new drug. As part of the preparation, he had had to be taken off all medication for two weeks. Without his usual medication, his psychoses had run wild and he had spent days and days in the Quiet Room.
I didn't care. I had tried everything else. Nothing had worked. If there was a new drug, and someone was being given it, I wanted to be given it too. I didn't see what I had to lose.
I told Dr. Doller I wanted to be started on clozapine.
25
New York Hospital, White Plai
ns, New York, January 1989
When Lori asked to be started on clozapine, I had to think about it really carefully. I wasn't sure that it was a good idea. The drug was just becoming available to us on an experimental basis. It was possible that it could offer Lori some relief from the voices and other hallucinations that were tormenting her. It was also possible that it could kill her.
Was the drug worth the risk? I thought back over our work together. When Lori first arrived on the unit two years earlier, I was young. I was single. I loved my work. So I was often on the unit late into the night, chatting with my patients or simply hanging around the nursing station.
One winter evening I was just walking out after a long day, when I passed the unit dining room. Mealtime was long over, and the room should have been empty. But there was Lori, all by herself, pacing around and looking uncomfortable. Some instinct made me stop.
“What's wrong, Lori?” I asked.
“My father's out of town. He's in Chicago,” Lori answered.
I waited. That fact in itself didn't seem particularly upsetting to me.
“It's snowing,” she continued. It was, indeed, a very bad day, all stormy and blowing. “I'm worried about him.”
“Maybe his plane will be delayed,” I suggested.
She began to cry. “His plane is going to crash. It's going to happen because I am going to make it happen. I am going to make it happen because I want it to happen.”
It was heartwrenching. She was suffering so. Here was something I could relate to easily. There was nothing bizarre about what she was feeling. She was worried about her father. What's more, she was angry with him, angry because he was away, angry because he wasn't there to visit her, angry because she was worried about him.