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by A Former Patient
I am a catatonic schizophrenic. I am also a wife, a mother, and a social
worker. All of which essentially means I am a person like other people,
but one who happens to suffer from a disease called "schizophrenia."
What does it mean to be schizophrenic? In many ways, that is difficult
to say. What each individual experiences is somehow unique. Perhaps what
we all experience are feelings of fear, loneliness, and despair. I believe
we all can truthfully say, "I am a stranger and afraid, lost in a world
I never made."
Schizophrenia crept up on me unexpectedly. Like everyone else, I had
grown up with all the stereotypes of what it meant to be "crazy." When
everything went wrong, I had periods when I felt I was "losing my mind."
None of these prepared me for the reality. I did not "go out of my mind."
In fact, if anything, I very much went into my mind.
It started one summer when the breezes were warm and the skies were blue.
I was 21 that summer, a time when life should be opening up. But without
my knowing, my mind was closing down.
It started with such a little thing: I began to laugh when something
went wrong. Why did I laugh? I don't really know, unless it was because
everything was going wrong, and it all seemed so ironic. The other side
of that coin was fear-fear of the world and fear of myself. It was a fear
greater than fear; it was sheer terror. There was fear involved in everything
I attempted, but the terror had not reached out to engulf the world. Not
yet.
I began to feel very visible and vulnerable, so withdrew from the world
as I did not want to be seen. My terror only grew. And then my mind betrayed
me. No longer did my thoughts accompany my behavior as I went about my
tasks. Instead, somehow I had become an unwilling onlooker while my thoughts
traveled new pathways to a world I did not know. It is strange to lose
control of one's thoughts for they are the very essence of one's self.
How do a person's thoughts betray him or her? In my case it took various
forms. There were times when in the midst of a thought, it vanished completely,
leaving nothing but a great blankness in my mind. Other times, I was unable
to frame a thought of my own, so my mind eagerly grasped what anyone said
and repeated it over and over to fill the terrible blankness that was
there.
At the other extreme, there would be such a multitude of thoughts, that
I scarcely knew which one to focus on. At these times, if someone were
to speak to me, his of her words would take on a multitude of meanings.
A host of responses would leap into my mind.
The result was I was either too overwhelmed to reply or-in self-defense-I
would choose the response with the most basic meaning. Perhaps the most
disturbing were those times when, again in the midst of a thought, a whole
different line of thought would appear, an alien thought with no connection
to me. My mind spoke in rhythms, and I was compelled to follow the rhythm
of my mind in my speech.
My thoughts became so loud I feared everyone could hear them. They were
ever-present, no longer willing to fade into the background as I went
about my daily life. As though they followed the pattern of my mind, the
voices took over, softly at first, then louder until they screamed through
my brain leaving jagged bursts of pain behind. I would bang my head in
an attempt to escape from the pain of them.
Communication became difficult, for no longer were my experiences in
common with the rest of the world. This, then, for me was the beginning
of the long loneliness.
Muteness became a way of life for me, for how could one speak out of
the blankness and the chaos going through one's mind? And my body began
to sense things it never had before. I became aware, with new senses,
that if I spoke, the air around me, the very universe would shatter. My
eyes still carried to me the message of the world. The grass, trees, buildings,
and people still were there. But my feelings belied the message of my
eyes. It was to these new sensations that I now paid heed.
Loudness became a word with new meaning. A page in a book being turned
in another room brought an agony of sound. Cats stomped noisily across
the floor. The ticking of a clock was more than I could bear. My other
senses were heightened to such an extent that the clothes on my body became
a weight I could not tolerate. My eyes were bombarded by the colors all
around.
The terror grew. My body would melt, dissolving into the rain. I found
it hard to hold on to pieces of myself, as frantically as I tried. My
world was falling apart around me as I fought a losing battle.
People did not reach out to me, for how could they know the journey I
was on? And even if they had, could they have reached me across the abyss
that separated my world from theirs? I was drowning before their eyes,
but they didn't know how to swim to me. The energy drained from my body.
I spent my days curled up within myself, locked within my mind.
I felt I was an alien, an intruder in the world. I shrank from contact
with people, feeling they shrank from contact with me. Somewhere along
the way, the world, the very air about me, took on a foreign quality.
Danger was there that I couldn't define. Around me everything looked the
same. People carried on their lives as they always had, oblivious to the
threat of impending disaster that permeated the world. I looked for clues
that would tell me what it was I must fear.
The words of people, the TV, and the radio carried messages to me hidden
cleverly in mundane words. I no longer knew what I could trust-which one
was leading me into danger I could sense everywhere about me. I tried
to define the terror I felt.
And so, I became aware of "the gods." I sensed their very presence and
knew they would take my fear and turn it into disaster for all humanity.
So I began to scramble my thoughts to keep them from reading my fear.
Terror permeated my world. I no longer knew which action of mine would
bring disaster on us all. Indecision became my hallmark, until it was
so great I could no longer will myself to move. I had become catatonic.
It was not a simple journey I took. And how could one reach me to bring
me back? For me, it was many people and the many things they did. The
journey back started in a hospital.
There was a nurse who brought me her sweater one time when I had run
away without mine. There was a doctor into whose office I was led each
week. He sat there beside me in a silence that matched my own. Before
words were exchanged between us, he would take my hands in his and try
to get me to move. What patience he must have had.
How can I name everything that was done for me, the hands that reached
out to me. But the barrier remained to shut me off from the people of
the world.
They did not give up on me. Finally, I began to respond to them. I began
to talk. I began to move. I ate. I laughed. I did everything that people
did, but inside me, I knew I lied. Inside of me remained the fear.
I went over this same path many times: leaving the hospital and returning
when in response to it all, I would once again become catatonic. My goal
became to remain out of the hospital for a year. During the "good" times,
I worked and went to college. I tried to understand what was happening
to me.
Each one who helped me must have, at times, felt they had no impact,
that all they had done was swallowed up in the deep gulf wherein I dwelt.
However, step by step, I traveled the journey back. Each built on what
had been done before. Each time I became ill again much was lost, but
never did I return to the depths in which I had been before. Rather, it
was like a mountain climb, retreating only to climb a bit higher again.
Pine Rest was the last place to which I retreated. Once again, the terror
engulfed me. Once again, my thoughts deceived. The hospital became a haven
for me, my therapist a refuge I clung to-often in desperation. I began
learning to face the terror and to discover what it was composed of. How
strange to see it shrink to human size-the terror that once comprised
the universe.
In many ways there are fears in reaching out to another person greater
than those fears experienced in my illness, but assurance is there that
I will not have to face it alone. What courage I have comes from this.
I cannot tell in just a few words what it means to suffer from schizophrenia.
It is a way of life. It reaches to your deepest self and changes the very
essence of your being. It makes activities you once enjoyed nothing. It
makes those closest to you people from whom you must retreat. Terror permeates
your world.
The journey back can take a lifetime, and it is one that you never can
say is completed. Some never make it back. But with the help of God, my
therapist, my husband, and friends, I am on my way.
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