By: Pamela S. Wagner

I live in a closet. Unlike most closets, mine is invisible. No one else can see it or touch it or even come inside to keep me company. Nevertheless, its imprisoning walls and terrifying darkness are very real.  

The "closet" is schizophrenia, a major mental illness or, as some professionals now refer to it, a neurobiological disorder. I have suffered from schizophrenia a good part of my adult life. It is treatable but is, as yet, without a cure.    

 

The first signs of schizophrenia may appear suddenly, but often, as in my case, the onset is insidious and gradual. Although I did not have schizophrenia as a child, I see now that certain aspects of my childhood experience might be seen, in hindsight, as prodromal to the illness itself. For example, a certain anguishing hypersensitivity revealed itself at a very early age, in kindergarden: my fear of touching the "play money", used to teach us about real money, and my distaste for the texture and color of the graham crackers and apple juice we ate at snack time were so intense that I hid in the coat closet in order to avoid them. A few years later, I remember walking the family dog each night and believing a fire hydrant was a miniature nun who spoke to me about St. Sebastian, suggesting to me that I too was to die a martyr. In high school it became harder and harder to conceal my difficulties and although I was a good student and earned my share of A's and B's, I became virtually mute during the school day. Because of this, and my habit of staring straight ahead even when addressed directly, some of the other students took to calling me "the zombie".    

 

College brought even greater stresses and with them a certain paranoia. At first, the experience was mildly pleasurable: I "knew" that everyone was thinking and talking about me, but this seemed relatively benevolent and made me feel real. Later on this changed drastically as I came to believe that a local pharmacist was tormenting me by inserting his thoughts into my head, stealing mine, and inducing me to buy things I had no use for. The only way I could escape the influence of his deadly radiation was to walk a circuit a mile in diameter around his drugstore, and even then I felt convinced I was in terrible danger. Overwhelmed and unable to share my bizarre experiences even with the college social worker, I took an overdose -- a cry for help, not a genuine suicide attempt -- and later was hospitalized for five months.    

 

Despite two hospitalizations, I managed to graduate from Brown University a Phi Beta Kappa and go on to attend University of Connecticut School of Medicine. But after little more than a year, I could not function any longer. By this time the voices had made their appearance and were accusing me of being homosexual and, as they put it, "the whore of Satan." Moreover, touching any patient made me feel that I was being electrocuted; I was certain that the other students were reading my mind and making fun of me to such an extent that attending lectures caused me unbearable anguish.    

 

As my difficulties became more and more evident, the school required me to see a psychiatrist as a condition of remaining a student. But I was so terribly ashamed of my problems that I couldn't confide in my own therapist, fearing I'd be laughed at or contemptuously dismissed. Although I had been raised Unitarian and without most of the usual Jewish or Christian beliefs, I became excessively preoccupied with religion. I began to misinterpret the everyday world, finding enormous and supernatural significance in apparent trifles. I knew I was evil, Satan's spawn, and to this day am not sure that I was not in fact responsible for JFK's assassination as well as other international catastrophes. In fact, I was rehospitalized at the time of the 25th anniversary of JFK's death because of this. Once, the title of a book so precoccupied and disturbed me that I withdrew all my money from the bank and took off for New York City, intending to take a train to Orlando, Florida because I believed the book had told me to do so.    

 

I was, and despite medication at times still am, sensitive to casual remarks. Sometimes even a "hello" or "how are you?" can feel threatening or of cosmic significance. I hear the voices of abusively cruel people talking to me, with a running commentary on my daily activities, even when no one is present. Listening to the radio is impossible because of the personal messages I am sent, either by the DJ or by the selected sequence of music and advertisements. Although the poet Emily Dickinson did not have schizophrenia, some of her poems hint at an intuitive understanding of some aspects of the illness. In one poem, she wrote:

 

"And Something's odd -- within --

"That person that I was --

"And this One -- do not feel the same --"

   

Early on, I was aware that something was terribly wrong with me, that something was "odd within," though I could never have put a name to it or expressed the experience in words. Even when the more florid symptoms of a full-blown psychotic episode are under control, the sense of a strange unreality underpinning everything persists for me: "Reason," as I put it in a poem of my own, "burning and glowing but just beyond reach."    

 

Although I still have symptoms, I have not been hospitalized (except very briefly for a medication reaction) in a year and every day that passes puts me just that much further towards my goal of staying out of the hospital completely. At 44, I think I'm slowly getting better, and getting better at dealing with the difficulties that remain. I feel stronger and more stable now than ever before. Bad days, days when I cannot write or even read a word, are becoming rarer, while good days filled with productive writing hours are more frequent. In addition to my poetry, for which I have won prizes, I have had articles published in the L.A. Weekly and the Hartford Courant, one of which won the Connecticut Mental Health Media Award in 1993, an award limited to "professional journalists." Having struggled for so long, I find it difficult to call myself a professional journalist, but it's true: at last I am getting published, and earning a little money for it to boot. Since my lifelong dream is to be a writer, I couldn't ask for more!

So, if I'm better, what helped? What, besides the passage of time, has made the difference? Well, I can't name one single factor responsible for my recovery because so many things worked together. Medication has surely played a role, though I don't believe that medication alone would have gotten me to where I am today. With the help of my therapist, a nurse-clinician I see at a local clinic, I have found a regimen of medicines that seems to be effective. But simply seeing her once a week has, by itself, been of great assistance in helping me learn to function and cope better day by day.   At one point I also had the helpful support of a case manager but because of the progress I've made over the past few years I recently decided I no longer needed her services. Hartford' s VNA also helped immeasurably by providing me with a visiting nurse who came to my apartment regularly. She was able to more closely monitor my state of mind and how I was doing than someone who only saw me for office visits.    

Medication, therapy, contact with therapist, case manager and visiting nurse -- all have played an important role in my ongoing recovery and in a seemingly synergistic fashion. Time, too -- the simple fact that I've lived for so long with this condition -- must be another factor. I've learned to cope with my symptoms, which have diminished bit by bit over the years, and I am better able to function despite the ones that still trouble me. I'm happier, too, and it's hard to say if that is a matter of cause or effect. In either case, I am living proof that people can find contentment and satisfaction in life even with schizophrenia and that the diagnosis does not necessarily condemn a person to a life of unending misery. We need to have hope, both as patients and as family and friends of patients. In terms of the debate recently before Congress, however, much more needs to be done. Given the prevailing attitude and the resulting stigma against those with neurobiological disorders, I do not expect President Clinton's health care reform to change the present situation in which those of us with such disorders are penalized for our suffering because it is considered somehow not real, not significant, or our own fault.    

If a person is in an accident because of drunken driving, no one refuses to set his or her broken bones or charges enormous copayments. Yet this is precisely the case with neurobiological illness, which is no more the patient's fault than arthritis or diabetes or heart disease and may be just as chronically disabling.    

We need to stop blaming the victims, stop assuming that neurobiological disorders or mental illness is different from other forms of illness, a moral failing, a matter of good and evil instead of a disease like any other. We need to fund more research and provide accessible intervention and treatment so that lives are not wasted, so that those with neuorobiological disorders have a chance to live reasonably happy and productive lives.    

 

Schizophrenia is, for most people, an uncharted and terrifying shadowland that they seek to avoid along with the sufferer whose torments, pain and oddnesses so scare them. In the past, such people were put behind the locked doors of asylums. Today they are simply consigned to the anonymity and powerlessness of poverty, and are forgotten.    

I did not come to live in my closet out of choice or willfulness. Who would? Like other minorities in their own closets, those of us with schizophrenia suffer greatly in the closeted dark. We need the light and fresh air of acceptance just as much as everyone else, and we need to be treated as if we matter.    

We can't find our way alone, not without the help and understanding so often denied us. In spite of the closets imprisoning us, we still live among you, hundreds of thousands of us. Only with support and encouragement will we ever be able to break open the doors.

 

* Please note that parts of this article have been previously

published in a slightly different form in the Hartford Courant and the Schizophrenia Bulletin.