schizophrenia Bulletin, Volume 21, No. 3, 1995
First Person Account series
The article that follows is part of the Schizophrenia Bulletin’s ongoing First Person Accounts series. We hope that mental health professionals — the Bulletin’s primary audience — will take this opportunity to learn about the issues and difficulties confronted by consumers of mental health care. In addition, we hope that these accounts will give patients and families a better sense of not being alone in confronting the problems that can be anticipated by persons with serious emotional difficulties. We welcome other contributions from patients, ex-patients, or family members. Our major editorial requirement is that such contributions be clearly written and organized, and that a novel or unique aspect of schizophrenia be described, with special emphasis on points that will be important for professionals. Clinicians who see articulate patients with experiences they believe should be shared, might encourage these patients to submit their articles to First Person Accounts, Division of Clinical and Treatment research, NIMH, 5600 Fishers Lane, Rm. 18C-06, Rockville, MD 20857. — The Editors.
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 Janice 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.
Janice C. Jordan has successfully accomplished work as an Engineering and Technical Documentation Editor for over 20 years and has completed a book of poetry based on her thoughts and experiences. She enjoys spending time with her family and friends.
This article, originally from the Schizophrenia Bulletin, is in the public domain and may be reproduced or copied without requesting the author’s permission.