A long time ago I realized that, as psychiatrists, we had to have a healthy respect for our own humanness, and our own smallness in the face of what we were dealing with. If a person got better, we could appreciate that we had done a good job, but we also needed to realize that God—or luck—was on our side. If the person got worse and had to go to a state hospital, we had to keep ourselves from feeling that we hadn't done enough. For the truth is, we were powerless in so many of these situations. We did what we could, but sometimes the illness was just bigger than we were.
The feeling at New York Hospital was that because of cloza-pine's dangers, the drug should be given only to hopeless cases. I wanted to do whatever I could to help Lori. But could I face the fact that there really was no other hope left for her?
A lot of people thought Lori was already a hopeless case back when she came to our unit two years ago. I didn't believe it, though. It wasn't that she wasn't desperately ill. She was. In fact, coming to our unit in itself was like being branded a hopeless wreck. Our unit only took the very sickest patients, the problem patients. We took only the patients everyone else had given up hope on.
And we had a fair amount of success with them. I had some former patients who were living on their own, some living in halfway houses, even a couple who were managing to hold down full-time jobs. We hadn't cured them; these were people for whom no cure seemed possible. What we had done was to help them live more comfortably and function more effectively with the illness that they were probably going to have for the rest of their lives.
That's what I hoped to do for Lori.
Her records hadn't looked promising: Several long hospitaliza-tions. Persistent out-of-control behavior. Suicide attempts. Still, her history looked quite similar to those of other patients on our unit: The normal childhood, followed by a break in her teens. The early inability of her family and of Lori herself to accept the fact that she was seriously ill. The early reluctance of doctors to brand Lori with a diagnosis of schizophrenia, preferring instead to suggest that other illnesses like manic-depression might be responsible.
Then came a middle period when her behavior became more erratic and doctors began considering the possibility that Lori might be suffering from a personality disorder. Her behavior— throwing things, breaking things, and running away—was seen as deliberate and manipulative. It was felt that strong discipline and control were the key.
And then finally, as her illness progressed, she arrived at our doorstep clearly in the grip of severe psychosis. There was no longer much doubt in anyone's mind: In addition to her manic-depression, Lori clearly had full-blown schizophrenia: She was openly psychotic, paranoid and hostile. Her thoughts were disordered; her concentration and her mental ability were impaired.
Looking over the chart, I could see how much effort had been expended on her. Everything that anyone had known how to do they had done, from shock treatments to talk therapy. Practically every known drug had been tried. No effort had been spared, and nothing had worked. No wonder people were on the verge of giving up hope.
Her history didn't scare us here on the long-term unit, though. We didn't see patients like Lori as hopeless. We saw them as a challenge. We felt that we were a different unit, we were a special unit. Part of the esprit of our long-term unit was that we could do things nobody else could do. Just because nothing had worked didn't mean nothing could work. We could take people like Lori whom everyone else had given up on and help make them better.
We didn't believe that medicine was the key. Of course we still kept trying everything in our power to find a drug or combination of drugs that would make sense. Drugs could and did alleviate psychotic symptoms in about two thirds of all schizophrenic patients. But most of the patients who came to us had arrived on a long-term unit precisely because medication hadn't worked. Like Lori, these patients had already been subjected to a bewildering variety of drugs, none of which seemed to do much for them in the long run.
Instead, we concentrated our efforts on getting inside the heads of our patients. Many other treatments focused on using medication to alleviate the psychotic symptoms. These treatments were considered a failure if the patient was still hallucinating. We felt otherwise. We felt that, hallucinations or not, there was a person inside there—and that we could reach that person if we tried.
We spent a lot of time on the unit talking about how to reach our patients. It took a talent, a certain chemistry between two people—and it wasn't always the doctors who had it. Sometimes it was the nurses. Sometimes it was someone completely unexpected like a volunteer, or a cook. It was very much our sense that we could create a bond between our patients and someone who could be their bridge from inside their craziness back to the outside world.
My desire to put my beliefs in this kind of treatment into practice was one of the reasons I chose to come to New York Hospital in the first place. It was one of the few hospitals that had a long-term unit that used these kinds of techniques.
I hadn't always wanted to be a psychiatrist. I had come to psychiatry by a roundabout route. In college I had been an artsy type, interested in cinema, literature and poetry. I saw them all as opening windows into the hidden side of people. In college, too, I had been fascinated with the literature of psychosis. One book in particular, called
Two Accounts of a Journey Through Madness,
intrigued me with its description of a patient's attempts to understand her own illness.
It wasn't until my third year of medical school, though, when we began rotating through different specialties, that I noticed a difference between myself and my classmates. They either liked to run around and do research, or treat sick people. What I liked to do was talk to the people I was treating. I wanted to know what they felt like, what their illness was like for them, and what it was like for them to be in the hospital. I also found out then that people responded well to me. They seemed to want to talk to me.
I decided to become a psychiatrist. And when I arrived at New York Hospital, I asked to be assigned to the long-term unit. I liked the idea of being somewhere where patients were given the time to work through and understand their own illnesses.
My emphasis on psychology, though, didn't mean I was going back to the old days of blaming schizophrenia on flawed parenting—the old model of the schizophrenogenic mother. We weren't looking for a psychological cause of the illness. None of us disputed the biological cause of schizophrenia. We were, instead, looking to understand the
experience
of schizophrenia, and to try to help our patients learn to tolerate that experience better.
I felt that it was one thing to talk about impaired dopamine pathways, or atrophied frontal lobes—explanations that make up the scientific underpinnings of what we know or surmise about the causes of schizophrenia. It was quite another to understand just what it was like to live with a broken brain. For that is what the experience of schizophrenia is like. A person is walking calmly through a normal life when suddenly and without warning, something terrible occurs, something she has no words to explain. Something actually does break inside the brain.
What is there in any human being's experience to prepare him or her to cope with a broken brain? Who can understand what a catastrophe this break is for the human soul? For the thing that has broken is the person's ability to relate to another person. The thing that breaks is whatever it is that connects people to their environment, that allows them to recognize another person as someone outside of themselves.
It is hard for any of us who have not experienced it to understand the internal desolation such a break must cause. It must be worse than the worst experience of solitary confinement. People with schizophrenia are locked out of the outside world, and locked inside their heads with nothing but these wild, out-of-control thoughts banging about inside. For what has also broken is the brain's ability to process emotion and thoughts. In people with schizophrenia the normal emotions—that we all every day categorize, process and either accept into our consciousness or push back into the recesses of our minds—run amok. Emotions that would normally be comfortably catalogued as unacceptable take on a life of their own as voices that seem more real than the real world outside.
We felt that by trying to understand what patients were feeling, we could help them to understand too. And by helping them to understand, we could help them feel less overpowered and less terrified by their symptoms. We could help them understand what had happened to them, and we could help them learn to manage their condition.
Take Lori's out-of-control behavior. Her record suggested that earlier doctors had believed she was breaking things, smashing walls and running away on purpose. They believed her behavior was under her control. They believed she was manipulative, attention-getting, and locked in a power struggle with staff that could be handled only through strict discipline.
I chose to believe otherwise. I saw her behavior as an understandable—if troublesome—response to her scary inner world. As I observed her, I could see how she would get. If we were around as she was accelerating into an out-of-control incident, we could see it happening. As she spiraled out of control, we could talk to her. We could say, “Lori, get away from that window.” But she couldn't hear. I could see the look of terror, the trembling. This woman wasn't playing mind games. This woman was in genuine distress.
And how would she have any idea how to handle that distress without being taught?
I saw the job of the long-term unit as teaching her to recognize her symptoms as phenomena, and to seek help immediately from those around her before they became too much for her to bear.
First though, we had to help her develop relationships with people around her.
People with schizophrenia are filled with an essential longing. They have a longing to explain what is happening to themselves. And they have a longing for a connection, for some relationship that will give them a pathway back toward the world they have lost.
It is precisely this kind of relationship, though, that Lori, and people like her, found most scary and difficult to accept. Because they have difficulty distinguishing what is “me” from what is “not me,” anyone who comes too close threatens the very core of their beings. They run from the love and care of their family; they distance themselves from the rest of the world. It isn't unusual to find people with schizophrenia who have almost no romantic or sexual experience. If your ego is a fragile thing, and you are afraid of being disrupted, or being invaded, then the idea of an intimate relationship is very frightening.
That's why Diane Fischer's relationship with Lori was so stormy. As Lori's therapist, it was Diane's job to get into the deepest recesses of her mind—which was a place Lori was afraid for her to go. Lori knew that Diane was trying to get inside her head, to probe her darkest, most secret feelings. That terrified her. She was constantly running away from Diane, or firing her, leaving messages in her box that she didn't want her to be her therapist anymore. Behind her flight were her own fears that Diane would reject her first.
My relationship with Lori, on the other hand, could be far more relaxed. I handled her medications, her passes, her statuses. Our interactions could be much more casual and informal. I was always available to chat.
What I did with Lori wasn't therapy. The therapist's job wasn't to say, “Oh, everyone feels that way.” The therapist's job was to say: “What does this mean to you? What do you feel about it?” But by saying to Lori, “Don't worry about it, we're going to make everything all right,” I was also building a therapeutic relationship.
Because her relationship with me was so concrete, we could break through her reluctance to let anyone know what was going on in her mind. She could say to me, “I'm afraid to tell you, I'm afraid to tell you,” and I would say, “Oh Lori, how bad could it be?” Each time she broke through the reluctance it got a little easier, and a sense of trust began to grow.
Eventually, she began to show me some of her journal entries. When it came to the one about the voices wanting to kill me, I was worried. I wasn't worried because I was afraid Lori was actually going to kill me. I was worried because I could tell from her voices’ comments that Lori herself was really beginning to believe in me. She thought I was powerful enough to get rid of the voices, and she was using the voices to let me know that.
I was worried because I was afraid I was going to let her down. I knew I could help her, but I knew that relief and control were all that my help could offer her—not an end to the voices. I could teach her to live with the voices, but I couldn't make them go away. I didn't think there was anything that could do that. That needed stronger medicine than I was able to offer. I didn't think there was a medicine in the universe that could do that.
And then came clozapine.
By early 1989, clozapine had become a big deal on our unit. Clozapine was the first entirely new antipsychotic drug to be introduced since Thorazine in the 1950s. We knew that the drug helped people who hadn't been helped before by medications. We just didn't know which people it would help, or why.
What we did know was that clozapine was a dangerous drug. While it had been used in Europe and experimentally in the United States for years, it hadn't yet been approved for general use here. We had just gotten access to clozapine under a compassionate-use protocol. It wasn't as rigorous as a research program, but the drug's use had to be carefully monitored. Sandoz, the manufacturer of the drug, was collecting data to present to the Food and Drug Administration as part of its application to market the drug in the United States.
The protocol we were to use in dispensing the drug on an experimental basis was complex and a little bit scary. That's because a number of patients in Europe had died from complications caused by the drug. In some cases, clozapine caused a condition called agranulocytosis, a suppression of the white blood cells that was potentially fatal. Before we picked the patients to start on clozapine, we all went to seminars to discuss the drug, the paperwork that would have to be done, the consent forms and who would have to sign them, the rigorous blood testing and monitoring that would be required, and the process of stopping the patient's existing medications and switching them to clozapine.