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.

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.

At the age of 14, I started having serious hallucinations and blackouts. I’m half African American and half Native American, and I didn’t try to get help because, in both communities, they called that “going to the white man.” But I became an outcast, because my symptoms got so bad that none of my friends wanted to have anything to do with me.

Instead, I lived with these symptoms for four years. My mental illness got so bad that I couldn’t cope with school and they asked me to leave. I went to Miami to live with my father, but he threw me out; and from the age of 15 until I was 18 I lived on the streets of Miami, with constant hallucinations and delusions.

At 19, I joined the military. But I was still sick and, after basic training, they gave me an honorable discharge and directed me to get mental health treatment, so I did. After taking medication and seeing therapists, I went back to work two years later, as a cook. Four years after that, I got an associate’s degree from the Restaurant School of Philadelphia and became a chef.

I worked as a chef for about 15 years. But there was a lot of stigma around mental illness in the restaurant business. Every restaurant I worked at, I saw other people disclose about themselves and they wound up being badly harassed and losing their jobs. So I hid my illness.

In 1995 I started working part time for the Chester City Consumer Center . After attending the Center for six months, I had asked the director if there were openings and she said she had wanted to hire me for the last six months. I’m still at the Center, now as its director, and it will be 10 years in November. Working with the Mental Health Association of Southeastern Pennsylvania, which is out there advocating for consumers, has helped me. Until I started working here, I felt like no one really cared.

Lamar Harris

Schizophrenia – Floating In An Anchorless Reality
by Janet Jordan
Schizophrenia Bulletin, Volume 21, No. 3, 1995
First Person Account series

The schizophrenic experience can be a terrifying journey through a world of madness no one can understand, particularly the person traveling through it. It is a journey through a world that is deranged, empty, and devoid of anchors to reality. You feel very much alone. You find it easier to withdraw than cope with a reality that is incongruent with your fantasy world. You feel tormented by distorted perceptions. You cannot distinguish what is real from what is unreal. Schizophrenia affects all aspects of your life. Your thoughts race and you feel fragmented and so very alone with your “craziness.”

My name is Janet Jordan. I am a person with schizophrenia. I am also a college graduate with 27 hours toward a master’s degree. I have published three articles in national journals and hold a full-time position as a technical editor for a major engineering/technical documentation corporation.

I have suffered from this serious mental illness for over 25 years. In fact, I can’t think of a time when I wasn’t plagued with hallucinations, delusions, and paranoia. At times, I feel like the operator in my brain just doesn’t get the message to the right people. It can be very confusing to have to deal with different people in my head. When I become fragmented in my thinking, I start to have my worst problems. I have been hospitalized because of this illness many times, sometimes for as long as 2 to 4 months.

I guess the moment I started recovering was when I asked for help in coping with the schizophrenia. For so long, I refused to accept that I had a serious mental illness. During my adolescence, I thought I was just strange. I was afraid all the time. I had my own fantasy world and spent many days lost in it.

I had one particular friend. I called him the “Controller.” He was my secret friend. He took on all of my bad feelings. He was the sum total of my negative feelings and my paranoia. I could see him and hear him, but no one else could.

The problems were compounded when I went off to college. Suddenly, the Controller started demanding all my time and energy. He would punish me if I did something he didn’t like. He spent a lot of time yelling at me and making me feel wicked. I didn’t know how to stop him from screaming at me and ruling my existence.

It got to the point where I couldn’t decipher reality from what the Controller was screaming. So I withdrew from society and reality. I couldn’t tell anyone what was happening because I was so afraid of being labeled as “crazy.” I didn’t understand what was going on in my head. I really thought that other “normal” people had Controllers too.

While the Controller was his most evident, I was desperately trying to make it in society and through college to earn my degree. The Controller was preventing me from coping with even everyday events. I tried to hide this illness from everyone, particularly my family. How could I tell my family that I had this person inside my head, telling me what to do, think, and say?

However, my secret was slowly killing me. It was becoming more and more difficult to attend classes and understand the subject matter. I spent most of my time listening to the Controller and his demands. I really don’t know how I made it through college, much less how I graduated cum laude. I think I made it on a wing and a prayer. Then, as I started graduate school, my thinking became more and more fragmented. One of my psychology professors insisted that I see a counselor at the college. Well, it appeared that I was more than he could handle, so I quit seeing him.

Since my degree is in education, I got a job teaching third grade. That lasted about 3 months, and then I ended up in a psychiatric hospital for 4 months. I just wasn’t functioning in the outside world. I was very delusional and paranoid, and I spent much of my time engrossed with my fantasy world and the Controller.

My first therapist tried to get me to open up, but I have to admit that I didn’t trust her and couldn’t tell her about the Controller. I was still so afraid of being labeled “crazy.” I really thought that I had done something evil in my life and that was why I had this craziness in my head. I was deathly afraid that I would end up like my three paternal uncles, all of whom had committed suicide. I didn’t trust anyone. I thought perhaps I had a special calling in life, something beyond normal. Even though the Controller spent most of the time yelling his demands, I think I felt blessed in some strange way.

I felt above normal. I think I had the most difficulty accepting the fact that the Controller was only in my world and not in everyone else’s world. I honestly thought that everyone could see and hear him. It progressed to where I thought the world could read my mind and that everything I imagined was being broadcast to the entire world. I would walk around paralyzed with fear that the hallucinations were real and the paranoia was evident to everyone.

My psychosis was present at all times. At one point, I would look at my coworkers and their faces would become distorted. Their teeth looked like fangs ready to devour me. Most of the time I couldn’t trust myself to look at anyone for fear of being swallowed. I had no respite from the illness. Even when I tried to sleep, the demons would keep me awake, and at times I would roam the house searching for them.

I was being consumed on all sides whether I was awake or asleep. I felt like I was being consumed by the demons. I couldn’t understand what was happening to me. How could I convince the world that I wasn’t ill, wasn’t crazy? I couldn’t even convince myself. I knew something was wrong, and I blamed myself. None of my siblings have this illness, so I believed I was the wicked one.

I felt like I was running around in circles, not going anywhere but down into the abyss of “craziness.” I couldn’t understand why I had been plagued with this illness. Why would God do this to me? Everyone around me was looking to blame someone or something. I blamed myself. I was sure it was my fault because I just knew I was wicked. I could see no other possibilities.

In the hospital, every test known to man was run on me. When the psychiatrist said I had paranoid schizophrenia, I didn’t believe him. What did he know? He didn’t know me. He was just guessing. I was certain he was trying to trick me into believing those lies. Nevertheless, he did start me on an antipsychotic medicine and that was the first of many drugs I have been given over the years.

This first medicine was Thorazine, the granddaddy of all psychoactive medicines. I have also, at one time or another, tried Mellaril, Stelazine, Haldol, Loxitane, Prolixm, and Serentil, to name a few. These medicines seemed to work for a while, but the symptoms always came back and the side effects were not pleasant. Many times, though, I began to think my medicine was poisoning me, and I would quit taking it. Then, the “craziness” would return in full force.

I would usually end up in the hospital and, with more medication, doctors would stabilize the psychosis. I tried to commit suicide twice during these periods. I wanted to punish myself for having this devastating illness. The Controller was trying to ruin my life. He was making me miserable. Yet, I clung to him like a sinking ship, even though I felt like I was drowning, slowly but surely.

I was truly blessed when I started seeing my present therapist. I have been seeing him for the past 19 years. He has been the buoy in the raging waters of my mind. I was blessed again when I became the patient of my present psychiatrist. He has been taking care of me for over 16 years. They both have been my saviors. They have not hesitated to try new medicines and new approaches. No matter how bad things have been, they have always been there for me, pulling me back into the realm of sanity. They have saved my life more than once.

In fact, it was through them that I started taking Clozaril, a true miracle drug. It doesn’t have half the side effects that the other neuroleptics have, and I have done remarkably well on this medication. The only problem with this medicine is its extremely high cost, which is why most people with schizophrenia are not taking it. Fortunately, my medical insurance covers the high cost of this drug. In fact, my medical insurance has paid for all of my hospitalizations and treatment. Sometimes I get scared that they will drop me, but I choose not to dwell on this fear.

I do know that I could not have made it as far as I have today without the love and support of my family, my therapists, and my friends. It was their faith in my ability to overcome this potentially devastating illness that carried me through this journey. There are so many people with serious mental illnesses. We need to know that we, too, can be active participants in society. We do have something to contribute to this world, if we are only given the opportunity.

So many wonderful medications are now on the market, medications that allow us to be “normal.” It is up to us, people with schizophrenia, to be patient and to be trusting. We must believe that tomorrow is another day, perhaps one day closer to fully understanding schizophrenia, to knowing its cause, and to finding a cure.

Thank you very much for listening to me. It is my hope that I have been one more voice in the darkness – a darkness with a candle glimmering faintly, yet undying.

Part I – The trip:

When a movie was presented to me by my parents, I often thought it contained a hidden message. I watched attentively throughout the movie Gattaca waiting for the message to appear. I stared in wonder at the lengths Ethan Hawk would go through to become of the elite. I sat patiently hooked to my screen while Hawk and his brother took a swim across the lake. I waited and waited until we reached the very end of the movie. Than the message my parents were trying to get across was clear: I was going on a trip.

I didn’t think much of this hidden message; I just shaved, showered and brushed my teeth like I did every night. I went to bed expecting nothing but sleep. But something wasn’t quite right… Startling white images awoke me in the middle of the night. My eyes widened… I had just been flashed with an image which resulted in me gasping for air. A giant spider had been hanging from the ceiling in front of me. The best metaphor to be used is this: every flash felt like I was bungee jumping in ice cold water while being in full darkness. There was a feeling of zero gravity mixed with coldness. This element of abnormality really shook me to the core and it remains the worst feeling I have ever felt. I was physically having problems breathing. My body started to shiver uncontrollably and forced me into a small ball. After the 4th flash, I started desperately whispering “please stop” and began repeating my friend’s name over and over. The flashes stopped and I remained in a panicked death grip throughout the night; a deer in the headlights, completely frozen.

Memories of last night’s movie stayed in my head; maybe my parents were telling me I needed to take this trip again. The next day I woke up filled with purpose. Even though I failed the trip – I told them to stop – I was determined to do whatever it took. I believed I would die in the process but would be reborn. I said to myself that I wasn’t ready for the trip, I didn’t know what to expect therefore this time I can prepare and do better. How do you prepare for death? I figured if people wanted me dead it was for a good cause and that it would somehow grant me a life of privilege or respect in the next. I didn’t mention it to my family because I thought they hinted I had failed. I played a heavy dose of Burnout 3 for the xbox that day. The speed and the music always calmed my nerves.

The following night I was in panic mode. I prepared numerous candles and incense. But most importantly I prepared a playlist of the most peaceful music I had in my collection. I figured these preparations would give me the edge I needed. The method of waking up really frightened me, I figured I would wake up like Neo in the Matrix or wake up a long hallway. The hallway would have a point of light at the end and would be filled with aliens from all planets. I didn’t sleep all night; I was still in shock. I became convinced that in order for this to occur (or start), I had to be asleep. And I really wanted to get it over with. But days became weeks and weeks became months. I would be up to sometimes six in the morning, wide awake, listening to my carefully chosen playlist. Exhaustion set in and eventually forced me to sleep every night. Nothing happened. I was confused by this situation and wondered if I had missed my one chance. The long anxiety filled days really burned me out. I became obsessed with that one horrible night. Eventually I broke down and came to my mother telling her I did not want to go on this trip. She brought me to the hospital.

Part II -The secret society:

My hospital stay gave me quite a bit of time for thinking. Boredom controlled me and my paranoid thoughts gave birth. This boredom (sitting looking at a wall all day) became a method of slow torture. I was determined to get out of the hospital at any cost. Therefore, while my delusions were getting worse, I was denying them to everyone. I became much more introverted and started to depend only on myself.

Because of the insane amount of time I had on my hands, my delusions grew. I started looking for clues about the trip and why I failed it. I began to think people spoke in riddles. They weren’t allowed to tell me the truth but they could hint at it. That was the law. For you see this group had laws. This opened up more ideas, the thought that an organization lived. I searched for theses hidden messages in every word and phrase. Hoping to find answers to all these questions I had. I would twist words around and around and find new meanings. I became convinced these people were not real doctors or nurses.

I started hearing voices. The voices were misinterpretations of what people were saying. In the hospital there is a lot of noise in the background. The voices I heard varied from every subject, but most importantly it mirrored what I was thinking. For example if I was pondering about death someone would say “you’re going to hell”. This gave birth to the idea of mind reading.

Mind reading crippled me. I became very paranoid of everyone, thinking they judged everything I thought or did. And getting judged by every comment can get very frustrating and angering. Because of the intense attention through my delusions, I began to feel really burnout.

I thought this organization had big plans for me since I was getting so much feedback. I began to think they weren’t just an organization but a secret society. And I was going through initiation period.

Eventually, I was released from the hospital with anti-psychotic medications… They did nothing for me other than provide me with panic attacks when I took them.

Part III – Mr Regina

Being released in the outside world really helped to calm my nerves. Having access to good food, music, video games and television really eradicated what I was trying to escape from: boredom. My delusions did not subside however, they became worse.

I thought the TV would often lecture me with some hidden agenda. A commercial with a little girl would mean I was acting like a little girl. A big man would mean I was acting like a big man. A luxury car would mean that I was on the right track. I would debate something in my head and flip the channels till I heard an answer. The answer would often be a metaphor.

I would sit at work looking at the cars. Each color would comment on my thinking. If I saw a blue car it would mean I was thinking sadly. If I saw a green car it would mean I was showing signs of growth. If I saw red car it would mean stop, white would mean we bring you peace.

I started to see signs everywhere. Traffic lights, stop signs, cars, movie previews, the color of the sky, advertising was a big one. A welldone truck would mean that I was doing some great thinking. A star on a bus would mean I was a star. Radio one would signify people were talking about me. This is why I began to think I was “Mr Regina”. I was the kid with great potential everyone put there time into.

I became so convinced that people knew me I would sit with strangers at coffee houses. I would randomly sit with a group of people and start listening, introducing myself, “yes I am the Greg, please to meet you”. I remember would old lady actually called me star, this just fuelled my delusions.

Groups began to scare me. So much judging, I had to constantly had to put on a nice imagine all the time. Never being rude in your mind is very difficult. I did my best to hide my rude comments and had blamed myself, my education, my society. I was constantly in defense mode. If I wanted to get into this secret society I had to be strong, polite and focused.

Months past and the attention drove me on the edge of insanity. I was tiered of being so stressed. I ended up watching TV one day hyperventilating while holding my mom’s hand. I remember the words on the tv so clearly, “your almost a legend”. My mom begged me to go to the hospital again, after half-hour of debate I told her this would be the last time.

After my sixth prescript on pills I finally found the right one. I started to doubt things, first mind reading, than everything sorta melted away.

There was a lot going on, and it’s difficult to grasp this all. The best I can explain it is severe culture shock, being jolted to the streets of China all alone.