Schizophrenia is perhaps the most painful and least understood of all mental illnesses, although there is increasing reason to be hopeful for those with this disease. I describe it as painful because it often strikes, without warning, young adults just at the point where their lives look full of promise; and its exact nature, cause, and treatment remain the subject of great disagreement.
When I worked in a storefront clinic Dave walked in one day, a new face. Dressed in an expensive overcoat, obviously bright and well educated, Dave was about 22, living in a flophouse and eating at the Salvation Army. All he would say was that he wanted someone to talk to; I saw him for a few weeks while he rambled in a vague, abstract way about wanting to make friends and find a career. He seemed very anxious. He avoided all my questions about how he got to his present state, what he was doing to take care of himself, in fact anything that would give me a clue about him as a person. Still he seemed desperate for contact and someone to trust. He refused to see our psychiatrist when I suggested some medication might help him relax.
After a weekend Dave came in in a different state, laughing and excited. I didn’t have to worry about him anymore, he said, because he’d heard from his father. His father couldn’t let his presence be known directly because he was an important figure in the CIA. But there were signs encoded in the graffiti in our neighborhood that Dave felt were messages from his father, reassuring Dave that he was being watched over.
I had seen Dave change from what is known as the residual phase of schizophrenia, characterized by negative symptoms – social impairment, poverty of thought – to the acute phase. In the acute phase, patients experience the symptoms that are popularly thought to be characteristic of the disease. These are delusions, or false beliefs, a distorted interpretation of reality; inappropriate affect, or an emotional state that is obviously not justified by objective reality; and hallucinations, or false perceptions, typically hearing a voice or voices. Dave was not hallucinating yet, though later he did believe that he heard the voice of God.
There are often thought to be two typical courses for schizophrenia. In one, a young person appears socially, emotionally, and intellectually normal until there is a sudden, acute episode (a “break”). Once the acute symptoms are brought under control, and medication can help greatly with this, the patient is left with the negative symptoms of the residual phase, which are more difficult to treat. Usually the person is left at a deteriorated level of functioning and may stay there for the remainder of his or her adult life. The other course has an even more pessimistic outlook. Some of the negative symptoms develop in childhood or adolescence, so the young person is experienced as “odd” by others. There is a gradual deterioration in functioning. Once an acute stage is reached, medication may again be helpful with the active symptoms but the prognosis is very guarded, partly because the patient had never made a good social adjustment to begin with.
I had not seen Dave’s first break but his fifth or sixth. It came out that he had been hospitalized first at age 19 and had been in and out of hospitals and community residences ever since. His father was dead and he had no family left in Chicago. The best I could do for him was to get him on a plane for his sister in California, who was caring and concerned and willing to get him the best care she could out there.
A few months ago I had the immense pleasure of hearing from a young woman who showed me what kind of progress has been made with the Daves of the world in the last few years. Like Dave, she had had a sudden and dramatic break and was in an acute psychotic state for some time. Her family got her into an active treatment program that first of all taught her that she had a disease that she was going to have to learn to live with. They taught her to monitor her own medication to help control the acute symptoms. They emphasized social skills, work, exercise, and cognitive control of feelings and behavior to counteract the negative symptoms. This young woman was speaking to a committee of state representatives considering cuts in the mental health budget. She spoke clearly and coherently, with great emotion which was, however, perfectly appropriate to the situation. No one would have suspected her condition if she had not chosen to reveal it.
I couldn’t help thinking of Dave. The prognosis is much better today for the young person in the early stages of schizophrenia. Unfortunately there are not nearly enough good treatment programs around, nor do most physicians or the general public know how to find one when it’s needed. The Mental Health Association or the state Department of Mental Health are the best places to start looking.