MIKE

MIKE: I am twenty years old. I knew that I had a sickness around June of last year. I was very hyper. I felt I had special powers and I felt I was in another world, a whole different world. I was seeing hallucinations, different types of animals, dragons, and all different types of things. It felt as if there were a plot, demons or evil out to get me. I was hearing voices and just basically worried that something was going to happen to my family. It felt like the government might have been in on it. Like the TV was talking to me. Any show that was on, it was talking to me. If I was watching cartoons, like if Batman was on, Batman and I were joining forces to destroy the evil that was out to get me. My emotions were very high. I was on a natural high, like nothing could take me down. I was unconquerable. I talked more. It was a very happy feeling. Then I felt real sick and I just got real close within myself.

I was at Adelphi University. I wanted to play volleyball, but there was a class in the gym. They asked me to leave, and I wouldn’t leave. From that point on I just started getting withdrawn into myself. I wouldn’t leave the court because I wanted to play my game and I felt people just didn’t want to see me playing my game. After that I was put in handcuffs and taken down to the station. I felt this was all a setup, part of the plot against me. When I got to the station I just completely blocked out from everybody. It was like I wasn’t even in my body. I was unconscious.

That night I ended up at the county hospital, and it was like I was being attacked inside my brain and nobody could help me. It was like I was being closed off from the natural world. So that night they gave me some type of tranquilizer to try to calm me down. I was out of it for a couple of hours and they didn’t know what was wrong. After a while I woke up and I just wasn’t calm. So they gave me another tranquilizer. I was on Ativan, and it helped to keep me calm. It gave me a good feeling.

A few days later I met Dr. Hoffman and Mrs. Miller and went for some visits talking to different doctors. They found out that I had a chemical imbalance. Then I went in for treatment at the hospital. I was tested, different kinds of tests, on computers, blood tests, people asking me questions. The doctors there and the social worker were treating me. I was in Low III for three or four weeks. While I was there it was pretty good. I didn’t feel that I was myself at that time, but after a while things were getting clearer. I was taking medication. I was eating more, which I wasn’t doing before.

After a while I was released and most of my symptoms were gone—seeing things, hearing voices—all those things were gone. But from going through the illness I had a depression, I was very sad. I went through this whole ordeal. I felt as though I wasn’t prepared to go on with life. Like all my dreams were beaten out of me through this illness. Then I went into the aftercare program and the whole staff there helped me learn how to start over. And that’s what you have to do, start over again with your relationships with other people, taking care of yourself hygienewise, making sure you look good, and building up your self-confidence again.

I was in the aftercare program starting over, and I was learning more about my illness, how to cope with it, how to deal with it, not to be in denial. I went to different group sessions. I had group therapy with the social worker. At first I didn’t think that these groups would be able to help me. I didn’t think I was getting anything out of them. But then I found out that there are other people who can relate to what I’ve been through, and I can relate to them too. So that helped me out a lot, being able to have something in common with other people there. Time went on. I got better. My depression level went down. I began to feel like myself, not totally, but almost there.

It’s still pretty difficult. I try to make up different schedules. I try working out to get more energy during the day. I try to discipline myself to get up early, to get things going. I put little reminders up on the wall, things I have to do during the day, any little thing I have to do. I keep trying to let my family know what I want to accomplish so that they can help me out if they see that I’m not doing it.

COPING WITH POSITIVE SYMPTOMS OF PSYCHOSIS

The only effective way to deal with positive symptoms is to take your medication. But it can take time for the medication to work. The following is a list of problems you may encounter while waiting for it to kick in:

• Your hallucinations continue.

• It feels like people are talking about you.

• You think someone is going to hurt you.

• You feel like something is wrong with your body.

• Your thoughts are confused.

• You experience any of the other positive symptoms described in chapter 4.

While you wait for the symptoms to diminish:

• Be very careful to take your medicine as prescribed.

• Be sure to tell your doctor or therapist about any symptoms you experience.

• Check with someone you trust and ask him or her to help you reality test.

• Remember that you have control over what you do. You do not have to do what voices tell you to do.

• Change what you are doing when you begin to experience symptoms. For example, go for a walk, listen to music, or talk to someone.

• Tell yourself, “This is a symptom of a biological illness. It will get better.”

• Remind yourself that the medicine takes time to work.

• If you feel you are losing control, contact your doctor immediately.

• If you cannot reach your doctor within a short amount of time, go to the nearest hospital emergency room or call 911.

The Fading out of Delusions: A Two-Part Gradual Process

While your brain chemicals were not functioning correctly, you most likely had many unusual thoughts. Maybe you believed people were watching you. Naturally you began to be extra-vigilant: you checked the windows an awful lot, looked around rooms for cameras or hidden microphones, suspected the phone line was tapped, and listened to every little noise. This is a good example of positive symptoms that may take time to diminish.

The way we think about things can be described as a “cognitive map.” A cognitive map connects our life experiences together and helps us make decisions in the future. For example, you get stung by several bees when you sit under a tree in a park. Your brain probably stores away the connection between bees and parks so that the next time someone asks you to go on a picnic or to sit under a tree, you are reluctant. Your automatic answer is “No way.” Similarly, if you are afraid people are watching you—even if it is only because of the chemical imbalance that’s sending you the wrong messages—your brain stores away that automatic thought.

Once you have an “automatic thought” it is very hard to get rid of. In fact, it may lie deeply hidden in the brain’s memory. As you get better with medication your thinking becomes clearer. You naturally—or sometimes with help from others—begin to question psychotic thoughts. And that is very good.

If you believed people were watching you during your psychotic period, the medication will help restore your powers to reality test so that gradually your unusual thoughts will decrease. You will stop checking out the windows, looking for cameras, listening to every sound. But do not get frightened if you find once in a while you automatically go back to your old ways—especially during moments of stress. Automatic thinking takes time and work to change.

JAMES: I did a lot of ignoring when I came out of the hospital. Most of the time when the symptoms came, it was when I wasn’t taking the medicine like I should have been, every day. At first I was boldly going up to people because I thought they were talking about me, but you can’t do that with everybody, so I just ignored it. When I get home from work I try to keep a hobby going, like working out or building a remote-control car.

BUDDY: Know you have to take a pill every single day. It becomes part of your life, so it becomes annoying, but I know in order to stay well and healthy I have to take it. When I stopped the Prolixin my job became stressful, and it felt like everybody was after me. It’s hard coping with all these potential side effects and weight gain from the medication. Also, if the medication doesn’t work, try a new medication until they find one that does the job.

JOSEPH: First thing was to realize that everything that happened was in my head, that there was no FBI following me, no video cameras in my house. The medicine played a tremendous role in helping me, but it took time, like two or three weeks, before I started to actually feel a change. Actually, at first I revolted. I thought, if I’m in here and I’m giving up marijuana, then why am I going to replace one drug with another? I said, “I’m not taking it.” They told me, “If you don’t take your medicine, you won’t leave the hospital.” That did it. I said okay.

Do not cloud your mind with marijuana. It doesn’t have any effect besides clouding your mind, your goals, your judgment, dreams, and aspirations. It just wipes them out. I don’t want to sound like a commercial, but it’s the truth.

It took a lot of time; everything didn’t happen overnight.

LAURIE: When I am quiet and I am by myself and am having bad thoughts, I tell myself to please make this thought go away. Sometimes it works and it goes away. Sometimes I hide in my room, and sometimes that helps but sometimes it doesn’t. My social worker helps me. I just tell her my problems and I get feedback. Talking to my family also helps me put my fear into words. It gives me a better understanding of things.

MARCUS: Try to get out, try not to be alone, try to do something active, and, if that doesn’t work, try to talk it out with your family and your doctors. I used to like to take walks, do push-ups, just to keep my mind off the problem.

AUDREY: Keep regular sleep patterns, stay away from drugs, take medicine, see your doctor, check with family members to see how they think you are doing, and be aware of your symptoms.

COPING WITH NEGATIVE SYMPTOMS

PATRICK: When I was about twenty-eight, I used to work for UPS. I was fired. From that point on my mother saw a change. I was talking to myself. If you’ve never been fired before, it’s like a shock. I kept very much to myself, with no friends, and I never talked about my problems. Once in a while I would get angry with my parents.

They first put me on Low III, where they said clozapine would be the answer. My mother was reading in the paper that it was a good medication and helps most of the patients. So they started me on 75 milligrams and went up to 150. I stayed on Low III for three weeks. Other people’s problems seemed worse, people screaming, yelling. It was a little rough, disturbing to see a lot of people walking around yelling and screaming. I felt out of place. My parents would come and I would ask them to get me out.

After three weeks I went over to day hospital. That’s where I met one of my friends. I stayed there maybe six months. Then I went to my counselor and she told me about Micrographics. At Micrographics they put me in production, and later they gave me a test to see if I was up to working in the files. Then after that they got me a job.

My energy level is still low. I try to go out and exercise a little, like bike ride or walk. I met a friend, and that’s helped me. I try to be more in the conversation when friends and relatives come over. I try to be talking, not to be left out. My mind gets scattered. I try to concentrate more on the subject. If you have a lot of things on your mind, try to keep an open part of your mind to deal with reality. Think about the subject so your mind doesn’t wander. I have a problem with talking to myself; when my parents tell me, I try to stop it.

Accepting help from other people, especially my parents, is important.

Coping with the idea that I have this illness is also hard. When I go to group, I think mine is not so bad. It makes me think more positively about myself. Some people are doing better, but you have to be able to accept it. What else helps? Stick to your goals.

The following are some of the negative symptoms with which people often struggle and suggestions about how you can deal with them:

1. You Do Not Feel Like Doing Anything.

Having no motivation, low energy, and little enjoyment in activities is very difficult to overcome. The less you do, the less you will feel like doing. For this reason, you must work on breaking the cycle of inactivity.

• Make a list of five activities you can do when you have free time. Put the list in a noticeable place, such as on the refrigerator door. Then, when you are sitting around doing nothing, walk over to the list and choose one activity. Some sample activities we have used are walking the dog, going for a bike ride, making follow-up calls for a volunteer job, exercising for ten minutes, writing a poem, playing the guitar, and calling a specific friend.

• Build structure into your day. If you are not doing anything, take a course; find a job; volunteer; participate in a day program, a rehabilitation program, a drop-in center, or a clubhouse.

• Make plans for at least one pleasurable activity every weekend.

• Plan for daily exercise. Begin with ten minutes a day to get your motor started.

2. Your Family Says You Do Not Look Good.

Sometimes when people are not feeling well, they don’t dress well or take care of their hygiene the way they did before becoming ill. This causes a problem because if you do not look well, people think there is something wrong with you. Here is a list of hints to keep you looking good.

• Shower daily.

• Use deodorant.

• Keep your hair clean.

• Stay clean-shaven (for males).

• Brush your teeth daily.

• Wear clean clothing.

• Take off your coat whenever you are in a heated room.

3. It’s So Hard to Look at People.

For many people with schizophrenia, it is very hard to make eye contact. Some people say they feel uncomfortable. Sometimes this is due to paranoid symptoms or the worry that other people will be able to read their minds. Other times it is a habit that started long before the illness. When you are ready, begin to work on making eye contact.

Eye contact is part of how we communicate. It is almost as important as the words we speak. It lets people know we are interested in what they are saying. It builds trust. These are very important elements in socializing and working.

• Talk with your group or counselor about what it is that bothers you when you look at someone.

• Practice looking at people when you talk.

• Ask your family or friends to point out when you are not making eye contact.

• Work with your treatment group to make you aware of lapses in eye contact.

4. You Feel Tired All the Time.

Feeling tired may be a negative symptom, or it may be caused by your medicine. (See chapter 11 for a discussion of coping with side effects.) Unfortunately, there is no easy way to fill yourself with energy.

• Let your doctor know you are tired. Sometimes the doctor can add to or adjust your medications to help this problem.

• Force yourself out of bed. Place your alarm clock away from your bed so you will need to get out of bed to turn it off. Use a second clock if necessary.

• Don’t get back into the bed once you are out of it.

• Exercise! Any kind of activity that gets your body moving will increase your energy.

5. It’s Hard to Keep a Conversation Going.

To increase your ability to communicate, work on building your skills one step at a time. At first it will seem strange, but gradually it will come more naturally.

Step 1: Practice listening to people.

Step 2: Repeat back to them what you hear them say. Example: The person next to you says, “I am bored by my life.” You say: “I heard you say you are bored.”

Step 3: Add a follow-up question based on something that person said. Example: “So, why are you bored?”

Step 4: When you find yourself not knowing what to ask, remember who, what, when, where, why, and how. These are six words that will help you in most situations when you don’t know what to say. Choose one to ask your question.

Make a special effort to be curious about people and things. Be a detective when you are with people. This will increase your interaction and show your interest. Practice each step for at least a week before going on to the next one. In just a few months you are likely to find it easier and fun to interact with family, friends, and new acquaintances.

Keys to Conversation

Be curious about people. Be like a reporter asking who, what, when, where,

why, and how questions to keep conversations going.

AMBER: For negative symptoms, I recommend finding something you like to do, like listening to music, reading, exercising, dancing, or even watching TV. I occupy my time with things I like to do. I read magazines, dance, and exercise a few times a week. I like hanging out with friends. As for the poor concentration, I think time has helped me. When I first got sick, my concentration was not as good as it used to be. I had a hard time reading. As time went by I started reading newspapers and magazines every day. My concentration is back to normal now.

LUCINDA: The only symptom I had was tiredness. I’ve learned to cope with that by going to bed earlier and using three alarm clocks to wake me up in the morning.

MARK: A very important thing is mental activity. The biggest thing for me was when I couldn’t think. I had a difficult time reading or playing music. But I kept trying. I think it is so important to have mental activity. If you don’t use your brain, it’s not going to happen. An object that is in motion has a tendency to stay in motion. That’s the way I think it is in rehabilitation. It does sometimes feel like you’re pushing against a wall. With enough resistance, that wall seems to move. Mental activity was the way to recovery for me, to think about something, read a book and feel something. Even to enjoy a friend you need mental activity. It can be music, art; but you need to use your cognitive mind.

THOMAS: I do things to try to take my mind off the problem, like watching TV, talking to my family. I read, listen to music, go shopping. There’s not too much I can do with my tiredness. I try not to go to bed too late so I can get enough rest.

Take your medicine. Stay away from things like drugs and alcohol. Talk to the doctors. Talk to your friends and people you care about.

RICHIE: I pray. You have to push yourself to do it. If you were working out, push yourself to do that again. You just have to make yourself do it. With time, it went away for me. I remember I felt so down I didn’t even want to put on my shoes. I just forced myself, and eventually I did it.

MARCUS: Don’t blame yourself—that’s number one. Talk to your doctors and try to get the right medication that works. Try to stay active. Try to go to school or get a job so you don’t dwell on your problem. Take your medication. Try to socialize with your friends at least one day a week. Talk it out with your family or doctors.

MARK: At the beginning I was so distraught that I was having side effects or symptoms that made me feel numb. I thought, “Life isn’t worth living. I’ll go off the medication and go crazy.” So even if you are feeling the biggest despair or self-pity, give it a little time. Complain. Try to switch your medication.

Additional resources:

Me, Myself, and Them: A Firsthand Account of One Young Person’s Experience with Schizophrenia, by Kurt Snyder, Raquel E. Gur, and Linda Wasmer Andrews (Oxford University Press, 2007).

Getting Your Life Back Together When You Have Schizophrenia, by Roberta Temes (New Harbinger, 2002).

Schizophrenia for Dummies, by Jerome Levine and Irene S. Levine (Wiley, 2009).