Schizophrenia Diaries

I was raised in Long Island, NY. I was a relatively active kid, and I had difficulty sitting still in school—I was bored and did much better with hands—on learning. When I was in my early teens, I started to hear a voice giving me commands. I was convinced God was talking to me. For example, God told me to go to Florida and start a civil rights movement, so I took my father’s credit card and flew to Florida, where I was arrested for inciting to riot and disturbing the peace.

I had several other episodes and wound up taking a lot of different trips in those years. I once tried to ride my bicycle to Washington, DC, to speak to the President, but I was picked up in Maryland. On a subsequent attempt to visit and speak with the President I was picked up by the New York City Police and refused to tell them my name, because I was told by God if they knew who I was they would kill me. I had not committed any crime and they knew I was delusional so I was sent to Bellevue Hospital. I remained there for 10 days.

At 13, I had auditory hallucinations telling me to kill myself, so I overdosed on pills. At the local hospital it was decided for my safety I should be sent to long-term care. I was committed to a State hospital, where I was kept for 9 months. I was given a diagnosis of schizophrenia and put on several different kinds of medication. I also received electroconvulsive therapy and hydrotherapy. At that time, the medicines of choice were Thorazine, Stellizine, and Mellarile. The side effects of those medications were so horrible that I never stayed on the medications very long. I found the best alternative was “self-medicating” by abusing alcohol and drugs, which I did starting at age 14.

I graduated high school and got a scholarship for art school. Because I wasn’t in a liberal arts curriculum, though, I couldn’t avoid the draft, and nobody in the service believed there was anything wrong with me—they thought I was trying to get out of going to Vietnam. So I went, and finished a 3½-year term of service. I did manage to complete my education, and after that, I moved to Florida, where I’ve lived ever since.

In my adult life, I’ve had about nine serious suicide attempts, and I’ve been hospitalized 15 times (two of which were long-term stays). When I was 35, a doctor from Chicago started coming down in the summers. He rediagnosed me as bipolar with psychotic features. In addition to the other medicines, I started taking lithium, which helped a lot. However, I still couldn’t change my addiction to drugs and alcohol, and the use of these substances only seemed to create havoc in my life.

It wasn’t until the mid-80s that I found really positive treatment after I became involved with a peer support group. I learned a lot from my fellow consumers about medications and therapy that could serve as alternatives to the treatment I’d had. I have been on several of the newer medications and since then my life has taken a turn for the better. Since then, I have devoted myself to psychiatric advocacy and improvement of the mental health delivery system. In 1992, I opened a drop-in center in Naples, FL, which I ran for about 5 years. This experience not only helped me in my recovery and helped me maintain my mental health stability, but it also allowed me to share and hear other ideas about maintaining a normal life.

I want to share my story in hopes of giving others with psychiatric disabilities the knowledge that they are not alone and there is hope for the future. Recovery is possible and there is no shame in having a brain disease.

I remember when I was younger, I always felt like I was different. I did a lot of living in my own head. I didn’t have a lot of friends. I didn’t do sports. I didn’t succeed in school like most of the other kids. I was mostly daydreaming in class and daydreaming, for what seemed like all the time.

When I was 19, that’s the first time I really started having serious delusions. I thought with certainty that everybody in the world was against me. I remember one time walking through K-Mart, and every person that passed by, I thought they were all tracking me and were all going to be sending secret messages to a government agency, who had plans on running illegal, underground tests on me. I always heard voices in the past, but this time, they were very prominent. “Get out of here! Get out of here! Get out of here!”

I remember walking as quick as I could toward the exit and just looking all around me. I was waiting for, any minute, a helicopter to come down from the sky, grab me, and take me away.

That night, when I went home, I started writing a journal about my experience. I still have it to this day. One of the passages reads: “The government is trying to inject my body with a secret serum that will liquify and, allow them to track my every move. They have plans on doing this within the next week. If I’m missing and you find this message, I will be located in an underground labaratory in Washington D.C.”

I didn’t sleep for three days after this. A lot of my time at nights, I spent sitting in my living room, staring out the window. My parents noticed that I was acting peculiar, but I thought that, since I didn’t know whether or not I could trust them, I didn’t say anything to them. I didn’t know whether or not they would protect me.

Later that week, I was in my room and thought I heard a noise coming from downstairs. So, I went downstairs and saw the figure of a man sitting on a couch. I walked over toward it, and the man told me that he was there to protect me, and that if I went to K-Mart tomorrow, the government would call off the secret mission because I would be seen too many times on their cameras, only this time the government planned on sending my brain to space to be reviewed by an alien coalition which believes I have information within my subconscious on the creation of the universe.

Eventually, I tried to kill myself and my parents found me with my wrists slashed. I was sent to the psych unit and diagnosed with schizophrenia. I’ve been working with a counselor ever since and they have me on medication. I’m not cured by any means, but I’m sure as hell a lot better than I was 3 years ago.

It all started after my best friend died in a car wreck involving a drunk driver. I was so crushed, that the anxiety was still prominent a year after he died. In fact, it was getting worse. I started not sleeping, I went almost two weeks with no sleep,and when I did sleep, I was plagued by nightmares of my friend dying. The panic attacks were getting worse and I was beginning to experience visual hallucinations. There were people and things that apparently only I saw, and a nearly continuous whispering in my head. The first time I heard a voice, it was telling me nasty things. This voice has developed into a character called Francis, who tries his hardeest to make me miserable. I was waiting on my ride after a school play and I was crying and going into hysterics. People just stepped over me and kept walking. I didn’t know what was going on.

I tried a counselor, who refered me to a psychologist, who refered me to a psychiatrist. At first, they treated me for anxiety, but as time wore on, it became apparent that anxiety was not my only issue. Other characters developed, including Cyanide, my closest friend.

Right now, I am taking 600 mg of Seroquel for Schizophrenia and sleep disorders (we’ve tried Zyprexa and Abilify) 150mg of trazodone for anxiety and sleep disorders, and 10 mg of Lexapro, for depression. Except for the occasion seemingly random outburst during class, and one real scare when I had a hallucination one of my friends being shot in the head, I have gotten pretty good at ignoring Francis.

Now, Cyanide takes over and controls my body occasionally. No one really notices, and if they notice something different, they have no idea what is going on.

No one knows what is going on.

I first met my friend, A___ in high school. She was a fun girl, very attractive, and it seemed to me very outgoing as well. I only knew her casually at first but eventually we grew to be very close friends, probably best friends, and eventually I learned alot about her.

A___ had a very disrupted childhood. I’m sure a lot of people have heard or have lived similar stories, but she had problems coping with reality. What I had taken for rebelliousness was actually an angry disconnect with the world around her. I know it seems I’m speaking for someone else but it was like she was pissed at the world for being the way it was, but also she was pissed because she could never really connect with it, she could never really be apart of the “normal” world because her mind was tearing her apart from it.

I didn’t really know she had Schizophrenia until she had disappeared for a few weeks and then one day I got a call from her. She sounded very weak, as if she had just come through a hell of a beating and was unsure if it was over. She had tried to kill herself because she was tired of the voices that no one else heard. She decided instead of listening to them and hurting other people should would hurt herself instead and make them go away.

by Jenna Ward

Sometimes, late at night, my brother sits in his darkened room watching television without any sound and laughing hysterically. His giggling is punctuated by one-sided, incoherent conversations that he holds with the voices he hears in his head.

Doug is 30 years old, and for the past 10 years, he has suffered from schizophrenia, a fact which he neither acknowledges nor accepts. Whenever I tell someone about him, the person invariably nods, even if he or she has no idea that schizophrenia isn’t “multiple personalities” or the result of bad parenting. Almost always, the first thing they ask me is, “Does he take medication?”

It’s not a bad question. In the past several years, there have been some real breakthroughs in drugs to treat schizophrenia. Scientists have come much closer to pinpointing the ways in which neurotransmitters such as dopamine and serotonin go awry in the brains of schizophrenics, and they are creating better medications to adjust the balance of chemicals.

These drugs, which have names like risperidone and olanzapine and clozapine, are not a cure. Often they have miserable side effects, and they are only partially effective in combating the so-called “negative” symptoms of the disease, things like apathy, social awkwardness and emotional withdrawal.

But the drugs can make it possible to live independently, to work and to interact with people, and to banish the hallucinations and voices. The new drugs are one of the few causes for hope in an otherwise devastating affliction, but there is one problem – if your brain is sick, how is it able to recognize its own illness?

This is not a hypothetical question. Consider that if your stomach hurts, the nerves in your body pass the information on to your brain, and it figures out what to do. But what about when the problem originates in the brain? How can one little piece of the mind hold itself apart, like some island of sanity, in order to make a self-diagnosis?

Doug, like many other people who have schizophrenia, cannot or will not realize that something is wrong, and he refuses to take any medication. So for my family, it all becomes useless, all the groundbreaking research and fancy new drugs, because he will not help himself.

Sometimes I want to just shake him and scream, “Don’t you know? You don’t have to be like this!” He is so lonely, so profoundly isolated from all that exists outside the cacophony in his skull. He has no friends, almost no human connection with anyone at all. He often imagines he smells horrible odors and sees vomit covering the television, his stereo, the carpet, his shoes.

Conversations with him go like this: “Kansas, you know Kansas is actually in Dallas, because there is the road, and then you’re in Texas and that’s why Texas sports teams are so good. Never buy Campbell’s. Chunky soup is really important. Never buy Campbell’s.”

But once upon a time, he was just my big brother who liked to tease me and taught me to water-ski and wanted to be an accountant. Now I barely remember that person.

And there is nothing we can do about it – we have no way to force him to get help. If a person with schizophrenia refuses to take medication, the only recourse is to have him or her involuntarily committed. But you can only do that by proving the person is a danger to him or herself or others.

I think we would have my brother committed if we could, and we watch for symptoms that would make this possible, but so far, he is just plain-old insane, not violent or dangerous. The system can only intervene when something goes terribly wrong, if Doug tries to harm himself or attacks my parents or a stranger. All we can do is wait for the crisis.

“He may have to get worse before he gets better,” Doug’s psychiatrist told my mother. If or when he breaks down completely and lands in an institution, only then will we be able to force medicine into his body, medicine that may have the power to bring back the person we lost 10 years ago.

And hopefully once he starts taking drugs, he’ll recognize he needs them and continue to take them on his own. I imagine it will feel like coming down off a 10 year acid trip.

But my brother has already lost a full decade of his life. Doug is in no position to make rational decisions about his own health care, and there should be some recourse other than acute crisis to allow for intervention.

I believe that another factor in assessing involuntary commitment should be the need for treatment. Doug may not be an immediate danger to himself or others, but he is clearly ill and highly unpredictable. I believe – and the statistics tend to support this – that at some point he will try to hurt himself or someone else. He needs medication now.

What makes it more depressing is the knowledge that, as with so many illnesses, the chances of recovery from schizophrenia improve with early, aggressive treatment. We missed that chance with Doug. Maybe things would have been different if we had been able to intervene when he first got sick.

Some – the same civil libertarians with whom I normally side – would call this a victory, that a person has some right to be insane. I call it cruel and an enormous waste of human potential.