Personal Accounts: Hope Lost and Found

My name is Nigel; I was born in 1964; and I have schizophrenia. I was suddenly stricken with severe schizophrenic symptoms in the summer of 1984. It really has only been since late fall of 1991 that I have fortunately experienced a dramatic decrease in the negative symptoms of my illness. I believe this change has been primarily due to my taking fluoxetine in combination with loxapine and benztropine. I had been taking the latter two drugs for approximately three years before the addition of fluoxetine, and they have helped control many of my so-called positive symptoms.

Before I took fluoxetine, the degree of terror in my life, due to my symptoms, was frequently so severe that I literally felt I was about to die. I often believed that if I couldn't somehow deal with my horrifying, disabling delusions, and lessen their power to terrorize me, they would, simply put, kill me. I believed over several years that the delusions were so powerful that they could shatter and thoroughly destroy the physiological operations in my mind and body that enabled me to remain alive.

This idea of my whole existence crumbling apart was especially powerful and immediate during the time the "breathing fixation," as I call it, preoccupied my mind. I have had to deal with a vast array of intrusive thoughts throughout my illness, but none was quite as debilitating, and persistent, as the breathing fixation.

During the period this delusion was a powerful presence in my mind, I believed that everybody (or in some instances just a few people) had stopped breathing but managed, nonetheless, to stay alive. Every time thoughts of this bizarre nature pounced on me, usually initiated by the twisted psychotic manner in which I perceived and interpreted events happening around me, I felt I was about to die. I believed it would happen because God had not, for whatever reason, placed within me the capacity to adapt to the "change."

It was due to my inability to reason effectively, over long stretches of time, that such bizarre and horrifying ideas entered and planted themselves firmly in my mind. They were so strong and persistent that even when the people who knew about my illness and my bizarre delusions tried methodically and persistently to reason with me, and to explain the obvious flaws in my reasoning, they were generally not effective in helping me discard the delusions that could so often, figuratively speaking, smother me with anxiety.

If you have experienced having something lodged in your throat and the feeling that you may not be able to dislodge it, or have dived into water so deep that as you struggle to reach the surface you are not certain you can hold your breath long enough, then you have an idea of the level of fright that occurred when the breathing delusion took over my mind. Imagine experiencing that level of fear over a period of several hours. That was what I had to deal with. The breathing fixation became imbedded in my psyche to such an extent that it had the capacity to stay on the surface of my mind not just for a few hours, or days, or weeks, or even months; in fact, it terrorized me consistently for several years.

The nature and character of my illness can be described as usually consisting of one or two powerful delusions that could,with the greatest of ease, appear on the surface of my mind. It seemed that as one delusional idea was resolved in some manner and was being submerged into the depths of my mind, there was always another delusional idea fully prepared to take its place.

Almost all of my most debilitating delusions dealt with the idea that certain functions of the human mind and body were changing and that everybody, myself excluded, was being given signs and easily decipherable instructions by God about how they should go about responding to these changes. I was always, as I perceived it, the one left out, and thus I lacked the knowledge essential to allow me to safely cope with the changes.

My delusions were so bizarre that, for example, I believed for an extensive period of time that God was telling people that killing was an acceptable form of behavior. I don't mean killing just animals, but people. I also believed for a long time that I could be possessed by a "force" that would have the ability to take over and control my physical movements. I believed that this force would make me walk directly into traffic and be run over. I also held the belief that the force would make me stare directly at the sun and would destroy my sight.

To put it bluntly, if it were not for my strong religious beliefs, I might have committed suicide during the frequent times when things seemed hopeless and beyond repair. But because I believe in the Eastern ideas of karma and reincarnation, I feel death is not a means of escape. I believe that one begins one's next life where the last ends. In other words, I believe that death does not provide an escape from one's problems. If the problems are not resolved in one life, they will follow you into the next.

Returning to my medications, I think, after discussing this issue with my psychiatrist, that the fluoxetine has been effective in several ways. First, I think I was depressed after the onset of my illness, and the medication helped with that. Second, I have always been an obsessional person by nature, and I think the fluoxetine eased some of the debilitating obsessional symptoms I had. Third, the fluoxetine, probably in conjunction with the loxapine, helped with my negative symptoms.

At the beginning of my treatment with medications, I took chlorpromazine, which I continued to take for approximately three years. Now, in retrospect, it is obvious to me that this medication was only slightly effective in helping me deal with my psychotic symptoms. Its effectiveness was perceptible only over, comparatively speaking, short periods of time.

The small measure of relief that chlorpromazine provided was possible only because of its ability to place within my mind a feeling of "full-headedness," which consequently allowed me to experience a moderate reduction in my severe episodes of agitation. I was literally doped. I was able to gain some relief by not permitting any thoughts to enter my mind, whether they were psychotic, delusional thoughts or any other type of thoughts.

Life for me during this time was almost completely devoid of any thoughts of an inspirational, creative, or illuminating nature. When my head was not "full" from the chlorpromazine, and thus essentially empty of thought, I was prone to experience an incredibly weak, vulnerable state of mind—one that left me with no capacity or resources to combat psychotic, frightening thoughts.

My psychiatrist, as well as members of my immediate family, have told me that during much of this phase of my illness, I frequently behaved in a zombie-like manner. Due to chlorpromazine's obvious inability to improve my condition very much, my psychiatrist decided that it was appropriate to try to achieve greater improvement by prescribing loxapine. To put it bluntly, my condition during the early stages of taking this new medication was horrifying, primarily because I very quickly developed a severe speech impediment. This impediment created a massive obstacle, it was truly humiliating, and I did not know of any strategy that might enable me to overcome it.

The speech impediment made my illness especially difficult to deal with because the act of "reality checking" with the people I was closest to, those who had some knowledge of the character of my illness, was frequently almost impossible to do orally. In my quest to discard whatever intense delusion was occupying my mind at the time, I sometimes had to write down the questions I needed to have answered. I frequently felt trapped, feeble, and incredibly vulnerable. The process of seeking relief from deeply frightening thoughts proved to be a horrendously impossible course. Fortunately, my speech improved dramatically after I had been on loxapine for about five months.

I feel that in a certain respect I have been fortunate. I have had undiminished support and comfort from both my parents and my psychiatrist throughout every twist and turn my illness has put me through. I am fully aware that many families reject the member who has schizophrenia. Therefore, the individual with schizophrenia may end up living on the streets, obviously distanced from any apparatus that might be able to help with the illness.

I am fully aware that my psychiatrist, due to his great care and concern, has played an incredibly important role in helping me deal with my frequent, horrifying episodes of psychotic anxiety in the past. Presently, and throughout the time I have been taking fluoxetine and have been on a path of gradual recovery, he has provided a great deal of guidance and support to enable me to become a greater and greater participant in, and productive member of, society.

Mr. Shindler's address is 190 Woolner Avenue, Apartment 506, Toronto, Ontario, Canada M6N 1Y3. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.