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What follows is about 5000 of the hardest words that I've ever written. I think it is a compelling essay, but it really drained me to write it. And this is by no means an exhaustive account of my dealings with mental illness. It would take a long book for that. I'm hoping to get at least a couple of responses to this so we can start a dialogue about this issue. So grab a cup of coffee or a smoke or your favorite bad habit and prepare to take a journey through the mind of a mad man.
I didn’t know that I was insane until I was thirty years old, a full ten years into my illness. When I was hospitalized for being suicidal when I was 30 and finally started to get the treatment I needed my initial reaction was relief followed by grief. I was relieved to know that I was going to be alright, but one day after a couple of days of hospitalization the full realization hit me of what that really meant. I had lost ten years of my life to mental illness. When that thought came to me I broke down and cried.
So let me just say first off that schizoaffective disorder is a hellish disease. I will do my best to relate to you what I’ve been through in hopes that my words will lead to empathy and hope. Whether you are currently suffering from the illness or know somebody who is I hope you come away from my little essay with a better understanding of schizoaffective disorder.
I was born October 4, 1972 a healthy eight and a half pound boy. I was normal in every respect. My formative years went by without a hitch. I changed a little when I got to be about eight years old. I preferred staying inside and listening to music over going out and playing with friends. And because of that I had very few friends growing up. That situation continues to this day. I’m still somewhat reclusive.
Looking back on when my illness may have started, I know I didn’t start having any serious symptoms until I was twenty. But things may have started before that. When I was about seventeen I went from being basically a happy kid to being withdrawn and serious. I never really had many friends, but I started drifting away from the ones that I did have because I found that I didn’t have much in common with them anymore. I started reading about different religions and I would later become obsessed with that. I lost my focus and after graduation I found it difficult to hold down a job.
Although things had changed with me, I was still a healthy individual in my late teens. That changed when I was twenty years old. I remember the day that I knew I wasn’t the same person that I used to be. I had become profoundly depressed and paranoid. I knew something was wrong, but I thought it was something that I could sort out on my own. Little did I know that it would be a decade long struggle that would almost claim my life.
I’ve heard that there are two types of schizoaffective disorder, the depressive type and the manic-depressive type. It was later found that I had the manic-depressive type, but I first experienced severe depression. A couple of days after I became depressed I sat in a chair staring out of a window for a long time. What was outside the window was not really registering in my consciousness. I was totally absorbed in my thoughts. It seemed as if my mind was slowing down. I would dwell on something that someone had said to me thinking that they had actually meant something else that was somehow related to me personally like there was some hidden meaning that I had to discern. That was the beginning of my psychosis. When I was around people after I started thinking that way I always thought they were talking about me in some covert way that I couldn’t pick up on. After an evening spent with a few friends I would think back on it trying to piece together what I thought was the real meaning of everything they said.
In the early days of my illness I was obsessed with reality. I thought that other people were real and that I was not. I later came to realize after I got well that I had been correct in a twisted way. I wasn’t the real me when I was suffering from my symptoms. I was a disease. I tried so hard to be real. It led to a lot of frustration. I came to think of myself as having no true self. That I was just an actor who had picked up on the traits of other people and spent my days acting like a real person. There were times when I would go blank and wouldn’t know what to say when I was having a conversation with somebody and I would take this as evidence that I was just a bad actor posing as a real person.
My family noticed a change in me because I had become hostile and cold toward them. After many years I learned that my sisters were actually afraid of me. They knew something was seriously wrong. But beyond them asking if I was alright every once in a while nobody ever suggested to me that I should seek counseling and that never occurred to me until I had been sick for three years.
I was hospitalized for the first time when I was twenty-three. I had finally broken down. By this time I had begun to hear voices and at first I thought that they were coming from other people somehow throwing their voices. When I was at work in a machine shop I would constantly be hearing these voices and they were very cruel. They seemed to know personal things about me that I thought only a few people knew. Then they started making a running commentary on my thoughts. This led me to believe that other people could communicate telepathically and that they could see my most private thoughts. That is probably the most horrible symptom that I had. I came home one day from work and I finally started talking to my mom about what had been happening to me. She took me to our family doctor first. I told the doctor that I wanted to kill myself and he instructed my mom to take me to the hospital.
While in the hospital that first time on a psychiatric ward they misdiagnosed me with depression. That was it. I have no idea how they missed my psychosis. I spent three days there and I only left my room to eat and a couple of times for some group therapy. As you can probably imagine I was afraid of people. I just wanted to be left alone all the time.
After that first hospital visit I went to see a psychiatrist. He went by the information that the hospital had sent him and prescribed me an anti-depressant. He did not check for any other symptoms that I was having. When I look back at my first experiences with the psychiatric profession it makes me angry. If they just could have thought to check for psychosis, my struggle would have lasted only three years instead of ten. I took the anti-depressant for a couple of months, but it did not help. I stopped seeing the psychiatrist and stopped using the drug. I quit my job at the machine shop and took up driving trucks.
Truck driving probably saved my life. I could not stand to be around people and trucking offered me a way to make a living with as little personal contact as possible. It’s probably a pretty scary thought that someone as sick as I was drove semi rigs, but I’ve been a very safe driver over the years. I currently have 9 years experience with no moving violations. But as you will see I could not hide from my illness in the cab of a truck. It came to get me despite my best efforts.
My illness got progressively worse as the years went by. I started thinking that people who were talking on the radio were speaking personally to me and speaking in that covert way so that I had to twist around what they were saying so that it would make sense as a message to me. As people passed me on the highways I would here a voice that I thought was coming from the occupant of the vehicle making a comment on what I was thinking about. When I had to stop at a truck stop to fuel up and shower I would keep a song going in my head and try to drown out all other thoughts so people couldn’t make any comments on what I was thinking. This didn’t really work though because sometimes when I had the song going through my head I would hear whistling of the same song as if to mock what I was doing. Those voices I was hearing were very mean and cruel. I only had a couple of instances where the voices were kind and they came around when I was seriously contemplating suicide.
After five years of hearing voices, depression and anxiety I had my first manic episode. It was wonderful at first. All the stuff that I had been experiencing started to go away. I felt energetic and happy for the first time in eight years. There were still voices, but they had dimmed to a whisper and I could not understand what was being said. I bought a house to renovate and I worked on it every day before I would go into work (I now had a trucking job that got me home every night). I would work for six hours doing landscaping, digging up fence posts, painting, and stripping hard wood floors by hand. Then I would go into my job and work for ten hours. I would come home and stay up a while surfing the internet. Then I would get four hours of sleep and start all over again the next day. I thought that I had finally made it out of the darkness that my life had become, but my illness would soon deal me the cruelest blow that I would experience yet.
After a few months of feeling really good I started having delusions of grandeur. I began to think that I was irresistibly good looking and that women were intimidated by me because of this. I also started to think that I had a really nice, muscular body when in reality I was 5’10” 230 pounds of average flesh. I started to think that I had supernatural abilities and even entertained the thought that I was the second coming of Christ. Then one night it all fell through.
A family member had been helping me restore the house that I bought and he would sometimes bring a friend of his over to help out or just to view the progress. The night that my mania ended I became extremely paranoid. I thought that my family member and his friends had been using me as a slave. I was having memories (false ones it turns out) that I had performed sex acts while in another personality. I thought that I had multiple personalities and that this family member could access them because he had conditioned me. I thought that my conditioning was breaking down and I was starting to remember things that my other personalities had done.
It was the middle of the night and I was in bed. Then I started hearing things in the house. It sounded as if someone else was there. It was a two story house and I was upstairs. The sounds were coming from downstairs. I got up and threw on some clothes. Then I thought I heard footsteps coming up the stairs. I rushed to the bathroom and locked myself in. There was a closet in there leading up to an attic where I had a rifle. I got the rifle, loaded it, and began to listen. I could hear some voices whispering and I thought they were coming through the vent. It was like someone was talking in another room and I could hear them through the duct work. The voices were saying that I had finally figured it out and they were wondering what they were going to do. I started yelling. I told the voices that I had a gun and that I was going to put a bullet in the first person I saw. I then rushed out of the bathroom like a green beret, ran down the steps, tossed the rifle aside and sped off in my truck. I didn’t stop until eighty miles later.
I rented a hotel room, but could not sleep. All through the night I kept thinking that my family member and his friends had followed me to the hotel and had somehow gained access to my room and were trying to erase the memories that I was having. I saw shadows moving across the walls and thought that this was a faint memory of them being there. When morning broke I called my mom. Thank God she was there because I don’t know what I would have done if she wasn’t. I gave her a really hard time on the phone even screaming into the receiver at one point. I thought that she knew I was being abused and did not care. I thought that she also wanted to use me, but was not able due to the other family member already having control of me. She talked me into coming home, though. Once there I gave her a hard time for about another hour. She didn’t understand what was going on, but I thought that was just a ploy so she wouldn’t have to admit that I was being abused. She started crying and I told her that I thought she was faking it. It seemed fake to me, like a bad actor trying to well up some tears. I thought it was all a game. Finally, I told her that I had been raped and she said that I should go to the hospital. Given the state that I was in I don’t know why I listened to her, but I did.
When I got to the hospital I had them check me for signs of rape. I felt physically and emotionally as if I had been raped. They say that people can have hallucinations of touch and I can certainly attest that can really happen. The doctor said that everything was normal physically. After some questioning by a couple of doctors, they realized that I was psychotic and gave me an anti-psychotic and a tranquilizer. I was then shipped off to a different hospital that had a psychiatric ward and that’s when my recovery began.
With the introduction of an anti-psychotic I improved almost immediately. After five days of hospitalization I was almost completely sane for the first time in ten years. Some people look back on their hospitalizations for mental illness as horrible times. That was not the case for me. I felt wonderful and enlightened. It was as if I had finally reached the state of eternal bliss that I had read about in so many books about eastern philosophy and it was a hospital ward. Things would not stay that way, though.
When I was released from the hospital, I moved back in with my parents and went back to work at my truck driving job. I still worked on the house that I had bought, but I was unable to do so for very long periods of time because I no longer had the energy that I once did. With the stress of the real world and my job my psychotic symptoms started to return. Not to the level that they had been before. I was just a little paranoid. It was affecting the way I interacted with people. I thought that they were saying things that were deeper than they really were and I had a hard time understanding people. I consulted with my psychiatrist about that and he upped the dosage of the anti-psychotic which took care of the paranoia but had some serious side affects. I found that I could not function well on the higher dose. I was tired all the time. I was sleeping at least twelve hours a day. I told my psychiatrist about that and he prescribed an anti-depressant that didn’t work. I lived like that for about six months before I made a big mistake. Instead of demanding that I get a different anti-psychotic I went off of the medication totally and stopped seeing the psychiatrist. I rationalized that move by telling myself that I had just had a breakdown before from working too hard. But I thought that the paranoia might come back and I told myself that I would just see it for what it is this time. Here is my journal entry from my first day off of the medication:
It’s the first day that I’ve gone off the medication. I feel a little better already.
I’ve decided, now that I know what the illness is, that I’m going to try to control
it without the drugs. If paranoia or depression starts to creep into my
consciousness, I’ll know why and, hopefully, be able to control it on my own.
Five months later I would relapse and come the closest I’ve ever come to committing suicide. I was not able to realize it when my symptoms started coming back. I have a total lack of insight into my illness when I am sick. I don’t know that I’m crazy when I’m experiencing my symptoms.
In some ways my relapse was less dramatic than the incident I described to you that led me to hospitalization the second time. But inside my head it was even crueler than the first time. I thought that when I had finally become well that it had been a trick that the doctors and my folks were in on to keep me in my place as some kind of slave to them. The multiple personality delusion came back. I began to think that one of my personalities was saying things that I would never imagine saying. He would say the vilest sexual things to women and pick fights with men. I came up to the guard shack where I deliver my freight one night and the guard was visibly shaking and when he talked to me he stammered as if he was afraid of me. Whether that was real or a hallucination I do not know, but it only furthered the idea that one of my personalities was being mean to people. In reality I never said anything to the guy except “hello” and “thank you.” It never crossed my mind that if I was really being mean to people that I would be fired. There was a guy who was fired from our company not long before that time for calling a customer an expletive.
It all culminated one night when I had a false memory of somebody pulling a knife on me because I had called him a bad name and gotten into an argument with him. This time I had gone too far and I thought that someone had tried to kill me. I spoke of kind voices earlier. This is one of the few times that I heard a kind voice. I was sitting in my truck after work in a catatonic state. Just staring off into nowhere so absorbed in my thoughts and what I thought had happened. I probably sat there like that for an hour. Then I heard a kind voice say that I was really in trouble this time; that I had people wanting to kill me and that I even wanted to kill myself. It said that I needed help. After hearing that, I finally moved from my stupor and went home.
I thought all night about what had been going on with me. I thought about the voices, the multiple personalities, the manic delusions of grandeur followed by severe depression. I came to the conclusion that nobody could help me. I thought that I was a victim of mind control and my only purpose in this world was to be used for someone else’s entertainment. I came to the conclusion that there was only one way out.
The next day was an off day for me and my family and they were throwing a party for my little niece’s first birthday. They had it out in the back yard. We lived in a two story house and I holed up in the basement trying to avoid having contact with anybody. I sat there and thought about how I was going to end my life. I had a baseball game on the TV but I was so absorbed in myself that I wasn’t registering what was going on in it. After a little while a few of my cousins came down to chat with me. I thought it was all a game so I played along with them. Then after a while I told them that I was not feeling well and that’s why I wasn’t joining them in the party. They then left me to myself.
I thought there might be one last hope. I got on the computer and looked up mind control on the internet. The only thing I saw was a person out west somewhere who claimed to treat victims of mind control. I sat for a while contemplating packing up my things and heading out west. Then I thought that it was probably some kind of ruse and started thinking about looking for my dad’s hand gun. But it was too late for that. Everybody was gone now and my parents were back in the house settled in for the evening.
My mom was sitting in the living room and I went in there and sat down. I started staring at her and she asked me what I was up to. I told her that she knew. I had heard her and my brother-in-law’s voices while I was on the computer and they were saying how foolish I was for looking up mind control. I felt like I was confronting a person who had committed a crime against me and I was now the one who was in control. The world had taken on a feeling of what I like to call “more realism.” Things seemed to have a weight to them, a gravitation that I had not noticed until then. Everything seemed more meaningful like there was a message to be discerned from each piece of furniture, the lighting fixtures and the carpet. Then I told my mom that I wanted to blow my head off. She immediately got up and said that she was taking me to the hospital. I started laughing.
I really put my mom through the wringer when I was ill. I don’t doubt that there are other people who have been hurt by a sick loved one. The thing you have to know if you are a person whose family member is ill is that when they do things like that it is not the real person who is saying those things. It is the sickness that is saying those things. When I am well I am a nice guy. I wouldn’t dream of saying some of the things that I said to my mother when I was ill. You may be dealing with someone who has changed radically over the years. Know that with proper treatment people with schizoaffective disorder can be restored to who they once were with maybe a few changes. You don’t go through the trauma of an illness like that without it changing you in some way. That’s probably why doctors recommend that people with mental illnesses also see a psychologist instead of just prescribing drugs for them.
My mom took me to the hospital for my third hospitalization for mental illness. She dropped me by the emergency room door and I refused to move until she left. Then I went in and the doctor took me right away. He asked me several questions and then escorted me to a small room that had a security guard outside of it. I had told the doctor that I wanted to hurt myself. An orderly came in and swapped my clothes for a hospital gown. He then took my blood pressure, pulse and temperature and left. After a little while he came back and took a blood and urine sample. After that I laid there on a bed for a while. They would not close the door to the room despite my requests. There was a kid who kept walking back and forth and looking into my room. I thought he was making fun of me with the security guard. Then after a while a doctor came in and started asking me questions about mental illness. I could not concentrate on what she was saying. I kept looking out of the door and losing track of what she or I was saying. She managed to get out of me that I had been hospitalized before and that they had prescribed an anti-psychotic, a mood stabilizer and an anti-depressant to me. I told her that I had stopped taking the drugs five months before. She asked me about symptoms but wasn’t able to get much out of me as I thought she wasn’t really a doctor. I thought she was a janitor posing as a doctor and that me being there was all a big joke to everyone in the hospital. I thought there were cameras and microphones hidden in the room and that the doctor/janitor’s little show was being broadcast throughout the hospital. Everybody was having a good laugh on me. Then the doctor left.
Some time later a nurse came in with some pills and some water. I noticed one of the pills as the anti-psychotic that I had been taking before. Then there were two little cone shaped pills that I didn’t recognize. I asked the nurse what they were for and she said to make me feel better. They turned out to be tranquilizers that knocked me out. The next thing I know I’m at a different hospital on a psychiatric ward. I don’t remember the paramedics coming to get me. I don’t know how they got me loaded onto the gurney and into the ambulance. I don’t remember the ambulance ride over to the other hospital. I woke up in front of the nurse’s desk on the psychiatric ward on the paramedic’s gurney with two nurses and the paramedics standing around me. I had probably one of the last hallucinations that I’ve had then. The paramedics’ eyes looked like they had marbles in their eye sockets. One’s were a solid blue and the other’s were a solid brown. I could not see the whites of their eyes. I got up off of the gurney, almost fell down because my legs buckled and then went to a nearby chair and sat down. A nurse came over and sat next to me and began asking questions. I don’t remember what any of them were. She then escorted me to a room where I immediately went to sleep.
That stay in the hospital went somewhat similarly to the one before it. I had the same psychiatrist in there as the time before and he was not pleased to see me back in the hospital. I told him why I stopped taking my meds and he became more sympathetic. He said that I should have said something to my other doctor so that he could change my prescription. Then it was my turn to be upset. I told him that all he had done when I complained about being tired all the time was prescribe an anti-depressant and that hadn’t worked. I didn’t think I had any other options. If you are suffering from a mental illness be sure you know your rights as a patient. There are many different drugs out there that can be prescribed for you. If one isn’t working well or is giving you a lot of side affects ask your doctor to change your prescription.
After a few days I was almost back to my sane self. I again felt as if I were experiencing enlightenment. All that stuff that had been going through my mind seemed like a bad dream and I was only now waking up. After seven days I was sent on my way with two new prescriptions. I have been on those two drugs ever since then, about three years, and they have been working well for me. I don’t plan on going off my medication for the rest of my life. Unfortunately, you have to look at schizoaffective disorder as a life long illness. But with treatment many people with the illness can lead normal lives.
I currently own a house. I’ve got a good job driving trucks still and they are sympathetic about my illness. I’ve missed five weeks total due to my illness in the last five and a half years and they always held my position for me for when I would come back. I’m still single and I plan on staying that way. I’ve got a few friends and I visit often with my relatives. I spend my free time reading, writing and surfing the internet. I’m looking to start leading a healthier lifestyle and I’m thinking of taking up walking and learning how to cook new foods. I’ve been well for three years and after writing this I don’t plan on looking back again.
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