The constant whispers, mutterings, half-heard insults coming from behind me, but when I try to see who it is, there is no one. The other voice that narrates my life, pointing out my failings and shortcomings, seems to enjoy shouting how slow and useless I am to understand things and catch the whisperer. The last voice continues to be itself, providing a background stream of insults and disparaging observations. Today, it seems to really push how hopeless and useless I am.
Day after day, week after week, they go on with very little respite. Sleep is no longer needed every day – only short naps – because I have to watch and observe everyone; I know they want to harm me. They can see the aura of evil surrounding me like a dark cloud, and they know what I am; they know that I am fundamentally evil, regardless of the good I try to do every day. I know that I am like a demon trying to work against their basic nature by doing good, but my very existence infects everything around me with evil, bringing harm and evil to those close to me. If I didn’t exist, the damage I’d done would be over. I’ll deal with it once I find the source of the Whisperer.
I know where the Whisperer is coming from: my roommates. They do it, and they have hidden little speakers where the Whisperer is coming from. Now it’s time to find the evidence. When I find it, the Whisperer will stop. I know it will. I start looking for the hidden speakers that I know are in the living room. I look under the couch and the chairs, look inside the cushions, tear them open to see. I cut open the back of the couch; maybe they’re hidden there. I use a broom to check the ceiling to see if I can uncover them. I’ll fix the holes later—it doesn’t matter now, finding the Whisperer is all that matters. I smash the wall unit, slam my fist through the four glass panels in a rage. Now my hand doesn’t work because I’ve cut the tendons in my joints. I never find the Whisperer. My roommates come home. They lock me in the house while they wait for the police and the ambulance to arrive. I set off, my plans to end my existence thwarted by the intervention of my roommates.
The above words briefly describe my first major psychotic episode and my first hospitalization. While it was happening, it all seemed perfectly acceptable behavior to me. Tearing apart the living room was a necessary consequence of my search for the speakers that created the whisperer. It all made perfect sense to me. All the racing, spiraling, cascading thoughts—the raw truth of my conclusions became self-evident to me. My schizophrenia became apparent then. The clues had been there for some time. Two of the voices I had been hearing had been occurring fairly regularly for years, but had gradually become more persistent.
This happened 20 years ago. Since that incident, I have had other incidents, some worse. Over the years, I have had multiple hospitalizations, drug after drug, and ECT to break the psychosis. While this experience is unique to me, the pattern is so similar to others with schizophrenia that only the details are different. Fear, confusion, loneliness, frustration, anger, and racing thoughts are a common experience shared by all of us with schizophrenia. For many people with schizophrenia, antipsychotic medications seem to stop the worst of the things I described above. For some, the medications will stop the voices, relieve the paranoia, and relieve the delusions. For others, the relief will be minimal. Perhaps the voices are quieter, the delusions or paranoia may not have the same urgency or level of fear. For a very small minority, the medications do not seem to work at all. Here is where I fall. I am lucky.
I have tried many different medications over the years. Sometimes they seemed promising, but sooner or later my symptoms would flare up and I would get sick again. Another hospital stay would follow. This continued for several years before it was decided that my schizophrenia was resistant to treatment/medication. This doesn’t mean we didn’t try different treatment protocols or interventions. We do them, we just don’t do them as often as we used to. I don’t have any regular medication at the moment, but I’ve managed to stay out of hospital for six years. Because the medication didn’t seem to be working, I had to find ways to manage my symptoms so that I could function and get on with my life. I think the one thing that made a big difference was agreeing to work with a psychologist early on in my illness, and continuing to do so, especially when things started to get out of hand.
Working with a psychologist helped me identify ways to manage my voices. They helped me identify some beliefs that felt right and obvious to me, but weren’t necessarily as right or obvious as I thought. While the beliefs are still there, being able to accept the possibility that they may not be true helps to reduce their impact on me and the paranoia they feed. The things I have learned from various psychologists over the years have made my life easier to manage.
Another thing I have discovered on my journey with schizophrenia is that I can draw. Art has become a big part of my recovery and living with schizophrenia. I use it to express what is going on in my head, to distract myself, and to get away from my voices and other symptoms.
While my life is far from easy and rarely free of schizophrenia symptoms, it is still a pretty good life most of the time. Much better than what I experienced in my early years of trying to live with schizophrenia.