I invite you to join me in playing out a metaphor. It will require your imaginative participation. Metaphors can be useful when explanations in ordinary language aren’t sufficient. Here is the metaphor: ‘you’ are required to find a bag of heroin during the span of one night downtown in your city; your life depends on it. You will likely doubt that you can do this, but remember that your life depends on it! That’s what getting out of schizophrenia is like: there are no clues, no map, no road signs like ‘wrong way,’ ‘turn here,’ ‘detour,’ ‘straight on.’ And it’s dark, lonely, and very frightening. You want nothing to do with it, but your return to sanity is at stake. That’s schizophrenia.
Here is a related conundrum: are you in control of your own thoughts? It sounds like a very odd question, but it’s at the core of the experience of schizophrenia.
A dying person who is normal, even a person in front of a firing squad, has choices.
A psychotic person is less, even minimally, in control of his thoughts. (We all remember the horrifying video that the Virginia Tech killer made of himself, raging in paranoia, before he began his rampage.) Not being in control of one’s thoughts is a terrifying experience.
When I am psychotic, I feel as though my awareness is happening to me. It’s a passive experience. I’m at the mercy of ‘my’ thoughts and ‘my’ perceptions of people. When I am psychotic, I am almost always paranoid. I perceive the universe itself as hating me. No one is on my side, so I have to hide how I feel from all others lest they harm me. I always feel that everyone else thinks I’m making it up because I am a bad person.
In schizophrenia, there is other people’s reality, and there is my reality. When I become severely psychotic, I lose awareness that other people’s reality exists. At those times I think my psychotic reality is all there is. I have lost track of the real world and my schizophrenic brain exists in isolation.
Schizophrenia is a disease of self-absorption. When I am self-absorbed, my head is ‘swarming’ with thoughts or ‘flooding.’ When I am psychotic, I become overwhelmed by all the thinking going on inside my head. It sometimes manifests itself as incredible noise. That manifestation always seems to me, in retrospect, to have its origin in some event in standard reality. A few years ago, eg, I was hospitalized for treatment of breast cancer and had not been given my Abilify and Mellaril for several days because I was nauseated from anesthesia. I experienced extraordinarily loud fighter jets landing and taking off in my hospital room! I realized later that the source of the noise was all the TVs in the hospital being on because of Hurricane Katrina (which I didn’t know about) and the fighting in Iraq. My brain was giving the noise a drama, or story, of its own. Similarly, my brain created disc jockeys in the air vents of the hospital room playing Beatles’ songs. I realized only later that I had been able to recreate the songs’ words because they are part of the culture of my generation.
Psychosis is exhausting because it is so unremittingly intense.
When I am psychotic, I feel like I have been pressed deep within myself. Everything I ‘can’ grasp refers to ‘me,’ even the tone of every voice I hear, or the people I see talking in the distance. I live in an apartment building, and when I am sick I ‘know’ there are people gathered in the hall talking about me. It feels like the universe is zoned in on me; and, since I invariably get paranoid, it feels like the whole universe hates me.
Schizophrenia is also exhausting because strong emotions get grouped together that have nothing to do with each other. The worst, and most common, case for me is the combination of terror and anger. Sometimes I feel each one separately and sometimes they end up merging as paranoia.
Some emotions, though, I have felt ‘less’ intensely than normal, especially the troubles and deaths of others. This superficiality of feeling happens because I am so absorbed in myself. It happens even when I understand intellectually and morally that this lack of feeling is inappropriate.
Looking back on my psychosis, I feel that my mind is in such disarray that it is forced to develop its own cosmic structures on which to append my reality. Thus, I have ‘experienced’ the universes of Alien Beings and Evil Ones taking over the world through thought insertion; and the Rules that they gave me, including that I ‘must’ keep silent about them, ‘must’ go completely mad, ‘must’ die.
In the months proceeding, the second time I was hospitalized for schizophrenia, I went through a period of walking in my nightgown through the dark alleys behind South Broadway, a seedy, dangerous area in Denver, at 2 or 3 o’clock in the morning. I wasn’t aware at the time that doing this was a suicide wish. I believed it was happening ‘to’ me: the Aliens Beings were commanding me to set myself up to be killed. I can see now that my mind was clothing its death wish in my psychotic belief system.
Like bizarre delusions, paranoia is based on not owning your own thoughts and feelings, especially self-hatred. Thus, when I am paranoid, my brain is projecting my own self-hatred onto other people and even the cosmos, always with me as the focal point.
People with schizophrenia often cannot see that they’re psychotic.
For many years, my mind denied it was psychotic by convincing me, cruelly, that I was making up my symptoms and my having this disease. In other words, that I was a phony. That caused even more self-hatred. It was very painful.
The biggest mental achievement of my life took place as I was recovering after my second hospitalization, when I was about 40. It is hard to imagine in retrospect, but it took me months to formulate this thought: ‘If everyone thought you were making it all up, would the doctors be giving you all this medication?’ That probably looks ludicrously obvious to you. But I had to write it down and tape it on my bathroom mirror so I would be reminded of it whenever I managed to ‘come to the surface’ from all that swarming in my brain. This thought was incredibly important to me: it was the point at which I began to realize that something really was wrong inside my head and that my doctors weren’t just playing along with a deception on my part. And that, in turn, meant that my doctors could help me get well.
When I am psychotic, I am paranoid, have bizarre delusions and am swallowed up by my own ‘reality.’
The paranoia’s the hardest to get out of. When I am paranoid about real human beings, I’m totally convinced that they wish to harm me. It simply doesn’t occur to me that I am being paranoid. And, untreated, the strength of the paranoia doesn’t lessen with time. It often takes a personal intervention by someone (usually met with rejection on my part, at least at first) and always requires an increased dose of my medication to get over it.
With absurd delusions I am more fortunate because I eventually—usually—have some insight. When I reach that point, I dare to ask myself, ‘Am I now psychotic?’ That insight—that moment when I have an ‘inkling’ that something is wrong with my thinking or that I am in a ‘different reality’—is the crucial healing moment, in my experience. It is followed by the moment when I can see that some of the thoughts in my head are not really my own but were created by psychosis. That is the moment I can start separating the real me from the psychosis.
How to get well? Medication and risking reaching out (calling my psychiatrist; taking another into my confidence about what I’m going through; even just getting out of the house). I call each of these a ‘North Star risk,’ or a healthy risk. Conversely, choosing to act on fear is the worst thing I can do in almost any case.
It may not look like it from the outside, but from the inside, the difference between normal reality and psychosis feels extraordinarily subtle. It can, in its subtlety, encroach on me without my even noticing and then there I am, again lost in the dangerous night of an ill mind, lost like the person searching for the bag of heroin and a way out. That’s why, today, I have a healthy respect for the cunningness of psychosis.
I once read, many years ago, that ‘psychosis is a potentially deeply enriching experience.’ I believed this and lectured on it for more than a decade. But now I have to ask whether this statement is really an extraordinary unkindness rather than an inspiring truth.
Let me approach that question from an indirect angle. My mind, when it is ill, represents disorder. It is an exception to the rules. Yet my mind also has a lot to teach you about diversity and variations. It has a lot to teach you about compassion for the exceptions. It challenges you to create and participate in an inclusive society in which everyone, every single person, is cared for, respected, valued, and useful.
The people who meet this challenge can help me and others as we make our ways out of our ‘night’ and back into civilization/normalcy.
The turning point, when I become reachable, is the insight (and it may have to occur many times for it to ‘stick’) when I realize that ‘those’ thoughts are not real, when I can say, ‘I don’t own those thoughts.’ My favorite personal example of this is my daring to say the Rules out loud to my psychiatrist, 1 of the 8 Rules each week, thus removing their power over me. That my psychiatrist respectfully witnessed that, thereby facilitating it, was an extraordinarily spiritual act. Witnessing and compassion combined with respect can help heal us.
How do I know I’m on the road back? I realize that my awareness of ‘thisness,’ the ‘this’ I am feeling now, is what aliveness is. I felt it also when I had cancer.
‘Thisness’ is the opposite of the self-absorption of schizophrenia. It lets me see beyond the self-absorption to get an inkling of where I am going as I claw out from inside my brain. But, as in the late-night search for heroin, it brings home again that no therapeutic roadmap is yet, to my knowledge, available for those trying to get out from inside the schizophrenia.
At that moment of ‘thisness’ I can see what is real and what is merely schizophrenia among my thoughts. In my experience, to be able to make that distinction is an extraordinary gift, and a necessity for recovering from an episode, however long or short it is.
This transformation is by its very nature repetitive. Each time I have a schizophrenic episode, I must retrace the journey through the night and my ‘dark city.’ I often resented that, especially when I was younger. Yet repetitive transformation is present everywhere in human experience: anniversaries, religious and patriotic celebrations, and so forth.
There is a question that, it seems to me, must always be raised when talking about schizophrenia. What about the people with this disease who never experience this turning point, this miraculous insight? Those people who spend their lives staring furiously at nothing? I am reminded of people who truly cannot bear their pain a second longer, like Mike, my dear friend at the first hospital where I was treated—Mike killed himself with a gun just after I left the room. I return to the notion that ‘psychosis is a deeply enriching experience.’ I disagree with it each time that I think of all those people who are immobilized or destroyed by psychic pain and terror. For them, psychosis is definitely not ‘deeply enriching.’ Here is my hope. I have a much better life than anyone would have thought possible 45 years ago when I first became sick. I hope that people now suffering from schizophrenia, in particular adolescents and young people, will have their own, genuine futures ahead of them no matter how ill they become even though they may not feel confident about that right now. You who are researchers are hard at work making this happen. You who are students will have all of this in your hands. Everyone can make inclusive room in their own lives and hearts for all people with schizophrenia.
Acknowledgments
Roberta Payne has had 2 fairly long hospitalizations, 1 in 1968 and 1 in 1989. Since her first hospitalization, her schizophrenia has expressed itself in episodes of psychosis of varying lengths preceded by longer prodromal periods, which now occur 2 or 3 times a year. She has spoken to classes of medical students at the University of Colorado each year for about 20 years and is on the Board of the Mental Health Center of Denver. She has undergraduate and advanced degrees from Stanford (BA, Classics), University of California Los Angeles (MA, Italian), Harvard (MA, Romance Languages), and the University of Denver (PhD, Comparative Literature). Her professional work includes 19 years of teaching Latin at the University of Denver; and Latin, Italian, English, and Biblical Greek privately. Creativity is important to her: she has published 5 books of translations from medieval and modern Italian as well as her own short stories, and she is an active ‘outsider’ artist.