Schizophrenia Diaries

I was diagnosed with paranoid schizophrenia at age twenty-six. After graduating college, I was unable to hold a job.
Everyone seemed to be against me, talking about me, trying to get me fired and ruin me.
Things were not going well as they had before.

No one saw things as I did. No one believed the things I thought were happening to me. The longer this continued, the worse it
became. Before long, I thought my house was being wire-tapped and that my food could possibly be poisened. Now living at home with my parents, I did not want to endanger them so I kept things to myself.

My parents sent me to a psychiatrist. They were worried because I was not working. I graduated from college while working part-time
as well as being involved in college clubs. Now, I was sleeping in until ten or eleven o’clock in the morning and often not working.
The psychiatrist offered to prescribe me an anti-depressant, because I never told him what I thought was really happening to me. If I
talked, things would surely get worse.

Eventually, it became intolerable. I believed my neighbors were plotting against me. I left notes in their mailboxes demanding that
they leave me alone. “Enough is enough,” I wrote. One of the neighbors was an FBI agent. I thought he was behind the wire-tapping. One of the other neighbors caught me, and the next day I was given the choice of going to the Crisis Center or going to jail. I chose the Crisis Center and was hospitalized.

During my stay at the hospital, I was prescribed Risperdal. At that time, it was a new medication and I was told I responded well to
it. I no longer believed people were out to get me. The hospital staff was pleased with me because I showered every day and attended
all the patient activities. I was the only patient that wore street clothes. They said I might be able to hold a job.

After getting out, I was determined to be normal. I found a part-time job as a sales associate in a department store, then worked
full-time for a lumber retail store chain. I did not mind the jobs, but wanted to use my college education. Writing always appealed to
me, so I enrolled in a few classes at a local university and worked as a “stringer” at a weekly newspaper. The position went well, and
I was hired by a daily newspaper.

The job did not last long. I stopped taking the medication because I had a difficult time keeping up. I was also extremely self-
conscious because I was approaching my thirties and was not on my own yet. People at work teased me about things I could do nothing
about. As a result of being off the medication, I turned in articles that made little sense and quoted people as saying things they never said. The managing editor had a meeting with me and told me he was concerned. He said he contacted the editor of the weekly
where I worked as a stringer and and my past professors about my ability to do the job. I denied there was anything wrong and was
soon fired.

After that, I refused to take the medication. I worked through labor temporary services and factories. The longest I held a job
was for nine months. It was on the “grave yard shift” for a a plastics factory. I managed to get my own place, but young people
moved in next door and were having parties every weekend. On my days away from the job, it made it difficult to sleep. I asked them
to stop a few times, and they became angry.

One evening, they did not have a party. Three of them cornered me and swore at me. They would not let me in my place. I was afraid
and confused. No one was that mad at me before. A fight broke out and I could not get away from them. The police broke it up and I
was sent to the hospital with an eye swollen shut and they were sent to jail.

After getting out of the hospital, I did not want to go back to the apartment. I returned to my parents’ house, but they did not want
me back without the medication. After repeated talks and my refusal to take the medication, they locked me out. I would wait on the
porch for them for hours, and they would let me back in. We argued and I was eventually hospitalized again.

Following the hospitalization, I was sent to a halfway house. My days and evenings were spent with other people that had mental
illness. During this time, I had to accept the that I was sick and that my life would be different. There was no where to go and no
one to do things with that did not have a mental illness. I heard many peoples’ experiences and it helped me not to fight or ignore
the fact that I was mentally ill.

For the past four years, I have been working at an agency that houses the homeless and mentally ill. It is the longest I have held
a job since I graduated college almost fifteen years ago. I worked part-time for two years and was then hired into a full-time
position. It was hard not to bounce around when things were not going well or I wished they were different, but it has been very
rewarding. I get to see people come and go rather than leaving and starting over again.

I grew up in a normal family, and I was a bright kid—I.Q. of 140, a straight “A” student. But while I was in college, my concentration began to disappear. I began to hear voices telling me that I was nobody, that I was never going to make it in life. My grades dropped from A’s to C’s. In 1977, I was hospitalized for schizophrenia. I was given electroconvulsive therapy, huge amounts of medication—the whole nine yards. The voices stopped temporarily then, but they weren’t gone for good. After my hospitalization, I tried to find a job and make it on my own. But I couldn’t take it. The voices would be just terrifying. Eventually I moved back in with my mother, and soon after, was sent to another hospital in Jacksonville, Fl.

I was in and out of the hospital and day treatment for a while, as the voices came and went. Sometimes I felt so good that I was in denial about my illness… until symptoms returned. I was so tired of treatment at that point, tired of the stigma I felt from my own mother and even my psychiatrist. He’d told her I’d be disabled for the rest of my life, and she believed it—neither of them thought that a person with a mental illness like schizophrenia could recover.

I couldn’t stand the stigma, so I moved out. My plan was to find a job, but I ended up homeless on the streets in Florida. I had no food, no medicine, and a job working a concession stand. For a while, I was living in someone’s garage, and in exchange for the living space, I had to do all kinds of work. When my symptoms became more severe, I was taken to a crisis unit.

This is where my story turns around. For the first time in my life, I was connected with a social worker who helped me get case management, Social Security, clothes, food, and shelter in an assisted living facility. My insecurities about living alone started to go away, and I felt motivated. This was the beginning of my recovery.

I was prescribed newer, more effective medicines, and a drug called Respidol finally made the voices disappear for good. I was able to live on my own in a regular apartment for the first time. I learned basic coping skills from my case managers and friends, as well as from consumer advocates who had experience in the mental health system. They taught me how to advocate for myself. Their help was so important in my recovery process, it made me want to give something back. I started telling my own story to consumers. Amazingly, I found that doing this not only inspired others, but helped my own recovery. The momentum kept building, like an upward spiral.

After 20 years, I finally went back to college. There were case managers who doubted me, who said I shouldn’t apply for student loans because I might not be able to get the necessary grades. But in the 1990s, I got my bachelor’s and subsequent master’s degree in social work and consistently achieved straight A’s. At this point I was completely independent. I was off Social Security, off Medicare and Medicaid, off subsidized housing. I now own a condo through a rent-to-own program I created, and that’s where I live… with my wife. Did I forget to mention I got married?

Now, I’m the coordinator for the Office of Consumer Affairs in Florida, an office funded by the Florida Department of Children and Families. I supervise peer specialists who are sharing their stories the way I shared mine. When my organization conducts focus groups with consumers, they usually say that it’s a little bit of everything that helped them the most. Not just medicine, not just therapy, not just financial stability, etc. It’s all important to work on, and it’s different for every consumer. Recovery is an individual thing. No one can tell you how to do it—the important thing is to know you can. You have the power and ability to make recovery a reality.

William McDaniels

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.

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.

It started when I was young. When I was young I would imagine schizophrenia things. Like I would think I was the most important person in the world, television cameras would follow me around, or people would be following me around when I was with my dad travelling, or people could hear my thoughts when I was in a buffet eating, that that caused me to self-importanfy myself a lot and talk to myself in my brain a lot or write diaries that were quite useless In class.

When I reached middle school I was starting a new life in Taiwan with my dad. This was hard because I didn’t know that language that well and everything was in Chinese. I got depression, and started to have delusions about my classmates and my teacher. I would think things like I could think of a jiggly African man and my classmates would laugh, those people are special like me, those teachers are weird they seem special, or my teacher is the best person in the world. She is like qui-gon in star wars and makes it seem like she cares about me imaginary a lot or is really interested in me. When I went to camps in America or school in America as I later realized, It seemed like she was in other people looking or interacting at me.

When I started high school, things were ok the first year. There was only a girl by the name Lisa that I thought was my teacher. The rest of the kids some were just special like they were like Kim possible on the Disney movies or had a secret code since they were special with the teacher. The second year I discovered I was in Lisa’s class like three of them, and I was excited because she seemed like a teacher. Then when I moved out of those classes I only had two. Because in the beginning we were placed into the same groups and the behind each other. I was excitable, but as I switched classes because of math, I discovered I wanted to be with her. So I started to hear voices of her and her new found psychologist kid friend and another Asians very capable friend in another class while I was in my class away from them. This started it all, and before I knew it I was hearing voices, laughing in front of others for no reason, talking to myself at times when was with Lisa and her friends.
My teacher caught this and you guys know the rest of the story.

I went to a psychologist she caught on sent me to a psychiatrist who told me to eat medicine but I refuse since I didn’t believe I have a problem. Later I was having really bad fights with my mother, so once before a meeting with a real psychologist I kicked the window of my mother’s car and it broke. The police came for me and spent me to the psy hospital. I was under 18 then so it was better a youth psychiatric hospital. I spent two weeks there the most you can spend unless you had a really bad problem. But I also had the worst psychotic episode of my life that set the basics for today. I discovered people were trying to get me out, there were angels, my teacher, my two friends Brian and Amy, and my dad who sneakily went around in people making me guess and then I was wrong and right etc, people commenting on my every move and thought, nurses not being who they were, one nurse not as they should in real life I once, looking back and forth at the nurses station making me feel like
as If they were helping me, or there were real people whatever that meant, and people in movies and radios etc. I was totally out of it at the hospital but I didn’t tell anyone for fear that if I told my symptoms would get worse , and plus I could handle it.

Two more school years had pass since my hospitalization. The other time I was hospitalized was for no reason just a argument with my mother. I just passed my time and got out of it. But school went on, and my life became weirder as the people I imagine were in other people. I once imagine them, kissing in front of me, in real people who were kissing!! That was really stupid and embarrassing. Even to today it is still like this. There are people in other people anywhere I go following me, and living with me day to day, etc.