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.
New York Hospital, White Plains, 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.
In thinking about that she began—as many people do—turning her feelings into fantasies of horrible disasters. And because she was fantasizing disaster, she began to believe she was creating it. It's a very primitive fear, this fear of the power of our own thoughts. It's one of the reasons many cultures have superstitious prohibitions against saying things out loud. Locked away in her own world, Lori just didn't have any way of putting her thoughts and emotions in perspective. This was something I could help her with.
“Of course you're worried,” I said. “It's a bad night, and you love your father and you want him to get home safely. You are worried about him, but you are also angry with him.”
“I'm not angry with him,” she retorted.
“Sure you are,” I said. “You have to remember that it's normal to feel angry, but that your thoughts can't harm anyone. Your worry and your anger aren't going to make the plane crash. You don't have that power. But you do have the power to influence the direction of your thoughts. You are saying that you are worried, but it is your own thoughts taking you in the direction of thinking about plane crashes. You can take your thoughts in some other direction if you want.”
Then I took her out of the room, out onto the unit, and pulled one of the nurses aside and told her what I had told Lori, so that she could reinforce the message. “Can you spend some time with her, talk to her a little bit for a while.”
That was the kind of incident that might have escalated. If I hadn't been walking by, she would have eventually become so tormented inside she would have thrown something or broken something. But it was also something that was pretty easily defused.
As for Lori, she was immensely relieved. I hadn't done much at all, but what I had done had taken away a tremendous amount of suffering from her. She felt like I had done something magical. Simply being able to name and to recognize her feelings had helped her immensely. Something like that happening early on really helped our relationship. She began to believe that I could help her. What's more, I believed I could help her too.
Over the two years she had been with us, I believed we had helped her. I thought over what we had accomplished. She had significantly more insight, and considerably more control over herself. I felt I had developed a relationship with her that was in itself a good thing. It was healthy and sustaining and supportive. I was proud of that, proud of what my own efforts had accomplished.
None of us on the unit wanted to give up on her. We all felt she was someone worth fighting for. When the craziness cleared, she was such an engaging and likable person, witty, thoughtful and fun. And she worked so hard on her own behalf. I had seldom seen someone work as hard as Lori did. She was driven to get well, and used her energy to put into practice every technique we all suggested for her.
But I was constantly faced with the fact that what I was doing wasn't enough. It was all well and good that Lori trusted me, but she was still having psychotic episodes and destructive impulses. She took up a lot of staff time, with meeting after meeting after meeting to discuss what we were going to do with Lori. It was also hard to ignore the fact that she was still in great pain.