The people who live with schizophrenia and other illnesses with psychosis are our heroes. What they have to deal with is terrifying and beyond imagination.
The following is “David’s Story,” an excerpt from Private Terror/Public Life by James M. Glass.
It’s like all my cells are exploded over the universe, and I live in each of those millions and millions of nuclei shooting in every direction. In the midst of all this, how could I possibly deal with the concrete, even tie my shoelaces, much less find my shoes?
I convinced myself several things were happening: Unrecognizable voices invaded my ears; transmitters had been planted in the ceiling; everyone on the Hall spoke about me; my behavior was watched and discussed by staff; nursing reports, patients’ journals, were filled with hundreds of pages describing my appearance and movements; spies were sent into the Hall exclusively to keep track of me and to report any suspicious behavior to the hospital administration; therapists ignored their own patients and spent hours in endless discussion, looking at the ramifications of my case; TV cameras, hook into the walls taped my facial expressions; every morning, around 3 a.m., three thousand spotlights aimed directly into my eyes; staff prepared elaborate strategies to humiliate me, to expose me and leave me naked in the front Hall; killers hid behind closed doors and waited until night to sneak into my room; food poisoned my insides and rotted out my intestines. Lying down, my body became so brittle I felt it cracking into a thousand pieces; at night, my roommate fed on my blood. Not exactly sane thoughts. In my frame of mind, if I were to stay alive, I had to be attuned to every movement on the Hall.
I hear this voice sometimes. I call it the “maelstrom of manufactured criticism” because it tears at me, rips my identity into shreds, and slices away at everything I am. The verbal abuse never lets up. It goes on and on for hours. Nothing outside touches me when it’s here: I refuse to talk to anyone; I sit, stare, smoke cigarettes until the voice leaves.
Nothing really stops the madness. I rarely change clothes; hygiene and meals become too much. And I have more important things to do than be bothered with my nutrition or cleanliness. Contact with people seems closed off. I lose interest in what happens on the Hall. I forget what day it is. Something as simple as selecting a shirt paralyzes me. That’s what begins my psychotic episodes, little things, nothing more dramatic than trying to find a shirt. It’s like this huge problem overtakes you: moving towards the closet, opening the door, searching through the rack. Each step of the process is like climbing Mount Everest, so you say to yourself, “Why bother, let it be, stay with the one on your back. Little things are magnified a thousand times, and what happens inside your mind takes on much greater importance than your own hygiene or appearance.”
The NAMI Family-to-Family class teaches the importance of patience and understanding in supporting a family member with this illness. They are taught how the brain works and malfunctions. They come to understand that no one is to blame for this illness or its effects. They are given information about how to work with the psychiatrist and are given hope in light of the new medications that can help their family member maintain their mental equilibrium. THERE IS HOPE.
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