Living with Schizoaffective Disorder, Part 2
February 4, 2009 at 2:49 pm
Written by Michael Crawford
Be careful when you wrestle with monsters, lest you thereby become one. For, if you stare long enough into the abyss, the abyss also stares into you.
— Friedrich Nietszche
Now I want to tell you about the symptoms that schizoaffective disorder shares with schizophrenia – the disorders in thought.
I find this difficult. It seems I haven’t ever written much, publicly anyway, about what it’s like to be schizoid. I think right now will be the first time I have written about it at any length. I have found it difficult to communicate my experience as compellingly as I had set out to do. It’s taken some time to understand why.
The problem I have is that it is dangerous for me to have the kind of experience that would allow me to write vividly about my illness. I have found in the past that to experience memories of my symptoms with too much clarity causes me to experience the actual symptoms again. It can happen that simply reflecting on my past in a deep way can bring about the insanity. This happened once during a time when I was corresponding regularly with a bipolar friend, and when I told her what it was like to really remember, she very anxiously pleaded with me to stop, let go and forget lest I be drawn into the darkness again.
After some reflection I realize that the danger is in remembering the feelings I have had when I’ve been symptomatic. There is no problem with recalling the events, looking at old photos from the time, or reading what I wrote when I was wigging. What is dangerous is remembering the feelings by actually feeling them again. Remembering that I felt afraid is OK, what is not is to actually feel the same fear I once felt. To write the best I could hope to I would have to recall the actual feelings again, and I think it is best I not do that.
For that reason I have found it necessary to approach this topic with a certain protective detachment that has resulted in the clinical tone my article has so far. I hope you can forgive me for it. I’m finding it a little more difficult to stay so detached as I write about being schizoid. Maybe I will be able to write more effectively here but just between you and me I find the experience more than a little frightening.
For a long time I have found it easy to admit to being manic depressive. I do it casually sometimes, even flippantly. Even before I decided to go public with my illness I was comfortable telling trusted friends that I was manic depressive. But I have always been much more reluctant to own up to actually being schizoaffective. What I said before, that I describe my illness as I do because no one understands schizoaffective disorder, is only part of the truth. The full truth is that even now, after so many years, I still find it hard to face the part of myself that is schizophrenic.
Many manic depressives will tell you that despite the pain it causes that there is something romantic about being manic depressive. As I said manic depressives are known to be intelligent and creative people.
However, despite its extremes, the symptoms of manic depression are mostly familiar human experiences. It is not hard to find completely healthy people who act just like I do when I’m either hypomanic or moderately depressed. It’s just the way they are. Psychotic mania and psychotic depression are not so familiar, but they are different in degree, not in kind.
The schizoid symptoms I experience are just plain… different.
This really gives me a serious case of the creeps.
Yet it is in place to appeal to the fact that madness was accounted no shame nor disgrace by men of old who gave things their names; otherwise they would not have connected that greatest of arts, whereby the future is discerned, with this very word ‘madness’, and named it accordingly.
— Plato Phaedrus
Auditory hallucinations are the key sign of schizophrenia. After the summer I was diagnosed, when I related my experience to a fellow UCSC student who studied psychology, he said that the fact that I heard voices by itself made some psychologists consider me schizophrenic.
Everyone has an inner voice that they talk to themselves with in their thoughts. Hearing voices is not like that. You can tell that your inner voice is your own thinking, that it’s not something you’re actually hearing someone saying. Auditory hallucinations sound like they’re coming from “outside your head”. Until you come to understand what they are, you cannot distinguish them from someone actually talking to you.
I haven’t heard voices very much, but the few times I have is quite enough for me. While I was in the Intensive Care Unit at the Alhambra Community Psychiatric Center that summer of ’85, I heard a woman shout my name – simply “Mike!” It was distant and echoey, so I thought she was shouting my name from down the hall, and I would go look for her and find no one.
Other people hear voices whose words express much more disturbing things. It is common for hallucinations to be harshly critical, to say that one is worthless, or deserves to die. Sometimes their voices keep up a running commentary about what’s going on. Sometimes the voices discuss the inner thoughts of the person who hears them, so they think everyone around can hear their private thoughts discussed aloud.
(One might or might not have a visual hallucination of someone actually doing the speaking – the voices are often disembodied, but for some reason that doesn’t make them any less real to those who hear them. Usually those who hear voices find some way to rationalize why the speech does not have a speaker, for example by believing that the sound is being projected to them over a distance via some kind of radio.)
The words I heard weren’t disturbing in themselves. For the most part, all my voice ever said was “Mike!” But that was enough – it wasn’t what the voice said, it was the intention that I knew to be behind it. I knew that the woman shouting my name was coming to kill me, and I feared her like nothing I’ve ever feared.
When I was brought to Alhambra CPC, I was on a “72 hour hold”. Basically I was in for three days of observation, to allow myself to be studied by the staff to determine whether lengthier treatment was warranted. I had the understanding that if I just stayed cool for three days I would be out with no questions asked, and so although I was profoundly manic I stayed calm and behaved myself. Mostly I either watched TV with the other patients or tried to soothe myself by pacing up and down the hall.
But when my hold was up and I asked to leave, my psychiatrist came to me to tell me he wanted to stay longer. When I protested that I’d met my obligation, he replied that if I didn’t stay voluntarily he would commit me involuntarily. He said something was seriously wrong with me and we needed to deal with it.
He told me I’d been hallucinating. When I denied it, his response was to ask “Do you ever hear someone call your name, and you turn, and no one is there?” And yes, I realized he was right, and I didn’t want that happening, so I agreed to stay voluntarily.
Hallucinations aren’t always menacing. I understand some people find what they have to say familiar and comforting, even sweet. And in fact another voice I think I heard (I can’t be sure) came when I was hanging out by the nurse’s station in the ICU. I heard one of the nurses ask me an inconsequential question, and I answered her only to be surprised to find her looking down at her desk, ignoring me. I think now she hadn’t addressed me at all, that the question I heard was one of my voices speaking to me.
I became very determined that the voices were going to stop. They really bothered me. I worked hard to determine the difference between real people talking and my voices. After a while I was able to find a difference, although a disturbing one – the voices were more convincing to me than what real people actually said. The concreteness of my hallucinations’ apparent reality always struck me immediately, before I ever heard what they said.
Some of my other experiences are this way too: the conviction of their reality always strikes me before the actual experiences do. People have often told me I should just ignore them, but I haven’t had that choice, by the time I can make the decision to ignore something I have already been frightened by it.
After a while I decided I just wouldn’t listen anymore. And after a short time the voices stopped. It only took a few days. When I reported this to the hospital staff, they seemed quite surprised. They didn’t seem to think I should be able to do that, to just make my hallucinations go away.
Still the voices bothered me enough that for years afterwards it startled me to hear anyone call my name when I didn’t expect it, especially if someone I didn’t know was calling someone else who happened to be named “Mike”. For example, there was someone named Mike who worked on the night shift at the Safeway grocery store in Santa Cruz when I lived there, and it would frighten me when they would call his name on the public address system, asking him to come help at the cash register.
At times, particularly that summer of ’85, I would have the experience that I was not participating in my own life anymore, that I was an detached observer of, rather than a participant in my life.
The experience was like watching a particularly detailed movie with really high-fidelity sound and a wraparound screen. I could see and hear everything going on. I guess I was still in control of my actions in the sense that some guy who everyone else referred to as “Mike” seemed to be speaking and doing stuff from the same point of view as I was watching from – but that person was definitely somebody else. I didn’t have the feeling that the part of me who was called I had anything to do with it.
At times this was frightening, but somehow it was hard to get worked up about it. The person who was feeling and exhibiting the emotions wasn’t the one called I. Instead, I just sat back and passively observed the goings-on of the summer.
There was a philosophical theory that I had long been interested in, that I think I first encountered in a science fiction story I read when I was young. Although I was originally fascinated with it in a conceptual and academic sort of way, solipsism took on a terrible new importance to me that summer – I didn’t believe anything was real.
Solipsism is the notion that you are the only being that exists in the Universe, and that no one else really exists, instead it is a figment of your imagination. A related concept is the idea that history never happened, that one has just this instant sprung into being with one’s lifetime of memories readymade without the events in them ever having actually occurred.
At first I found this interesting to experience. I had always found ideas like this fascinating to discuss and debate with my schoolmates, and now I would talk about it with the other patients. But I found that it was no longer an interesting concept that I held at a distance, that instead I was experiencing it, and I found that reality terrible indeed.
Also related to solipsism is the fear that everything one experiences is a hallucination, that there is some other objective reality that really is happening but which one is not experiencing. Instead one fears that one is living in a fantasy. And in fact that is not far off from what many of the most ill psychiatric patients face. The concern I had is that (despite my experience of actually being in a psychiatric hospital) I wasn’t really free to move around the ward and talk with the doctors and the other patients, but that I was actually strapped in a straightjacket in a padded cell somewhere, screaming incoherently with no idea of where I really was.
There. I told you this was creepy. Don’t say I didn’t warn you.
I once read somewhere that solipsism had been disproved. The book that claimed this didn’t provide the proof though, so I didn’t know what it was, and this bothered me tremendously. So I explained what solipsism was to my therapist and told him that I was upset to be experiencing it and asked him to prove to me that it was false. I was hoping he might give me a proof of reality in much the same way as we worked proofs in Calculus class at Caltech.
I was appalled at his response. He simply refused. He wasn’t going to give me a proof at all. He didn’t even try to argue with me that I was wrong.
Now that scared me.
I had to find my own way out. But how, when I knew that I could not trust the things I heard, saw, thought or felt? When in fact my hallucinations and delusions felt much more real to me than the things that I believe now were really happening?
It took me quite a while to figure it out. I spent a lot of time thinking really hard about what to do. It was like being lost in a maze of twisty passages all alike, only where the walls were invisible and presented a barrier only to me, not to other people. There on the ward we all lived in the same place, and (for the most part) saw and experienced the same things, but I was trapped in a world I could find no escape from, that despite its invisibility was a prison as confining as Alcatraz Island.
Here is what I discovered. I’m not sure how I realized it, it must have been by accident, and as I came across it accidentally a few times the lesson began to stick.
The things I felt, not with my emotions, but by touching them, by feeling them with my fingers, were convincingly real to me. I could offer no objective proof that they were any more real than the things I saw and heard, but they felt real to me. I had confidence in what I touched.
And so I would go around touching things, everything in the ward. I would suspend judgement on things that I saw or heard until I could touch them with my own hands. After a few weeks the feeling that I was just watching a movie without acting in it, and the concern that I might be the only being in the Universe subsided and the everyday world took on a concrete experience of reality that I had not felt for some time.
I wasn’t able to think my way out of my prison. Thinking was what kept me imprisoned. What saved me was that I found a chink in the wall. What saved me was not thought but feeling. The simple feeling that there was one small experience left in my world that I could trust.
For years afterwards I had the habit of dragging my fingers along walls as I would walk down halls, or rapping my knuckles on signposts as I passed them on the street. Even now the way I shop for clothes is to run my fingers over the racks in the store, searching by touch for material that feels particularly inviting. I prefer coarse, robust and warm material, rough cotton and wool, dressing in long-sleeve shirts even when it is hot out.
If left to my own devices I would (and used to) buy clothes without any regard to their appearance. If my wife didn’t help choose my clothes they would always be hopelessly mismatched. Fortunately my wife appreciates my need for tactilely appealing clothes and buys me clothes that I find pleasant to wear and that she finds pleasant to look at.
The importance of touch comes out even in my art. A friend of mine remarked once about my pencil drawing – pencil is my favorite medium – that I “have a love of texture”.
It is typical of schizoid thought that a simple but disturbing philosophical idea can overwhelm one. No wonder Nietzsche went mad! But I will explain later how studying philosophy can be comforting too. I will tell you how I found salvation in the ideas of Immanuel Kant.
Just because you’re paranoid it doesn’t mean they’re not out to get you.
Paranoia is the one of my schizoid symptoms that bothers me the most. While I’ve only heard voices a few times, if I weren’t taking an antipsychotic drug called Risperdal the paranoia would happen frequently. As I’m sure you could imagine, being paranoid is distressing and so I’m very careful to always take my Risperdal. Visual hallucinations happen quite a bit too (when I’m not taking my medicine anyway) but except for startling me they happen suddenly, I don’t find them as upsetting.
Paranoia is commonly thought to be the delusion that others are plotting against oneself, but it is a little more complicated than that. And you may be surprised to hear that even if one is self-aware enough to know that one is experiencing paranoia, to understand clearly that what one thinks is a delusion, it doesn’t make the delusions go away.
The paranoid are commonly thought to be deadly dangerous. While there have been cases of the paranoid attacking those they thought had it in for them, most paranoids are perfectly safe to be around and in fact are commonly found living among you in society where they lead more or less normal lives. You don’t have to be schizophrenic to be paranoid – it can arise as a neurosis, for example in response to early child abuse, and exist in a pure form without other schizoid symptoms like hallucinations.
I was interviewed in the March 30, 2000 edition of the Metro San Jose, in an article called Friends in High Places. I answered an ad seeking bipolar Silicon Valley engineers for anonymous interviews, but I told them they could feel free to use my name and even my photo. If you click the link, down towards the bottom of the page you will see me sitting on the driveway of the house I used to live in in Santa Cruz.
The article quotes me as saying “I can work effectively even when I’m wigging, even when I’m hallucinating, even when I’m severely depressed.” And by wigging, I meant that I could develop software while severely paranoid. I’ve spent a lot of productive hours at the office, laboring at my computer, while trying to avoid thinking of the fact that a Nazi armoured division was holding maneuvers in the parking lot.
The article goes on to say:
“Programming is more tolerant of eccentric activity,” Crawford says. “Even though I might have been weird, I was a good worker.”
The essence of paranoia is that one’s interpretation of events is deluded, not the perception of the events themselves. In the absence of hallucinations, everything a paranoid experiences is really happening. What the paranoid is mistaken about is why they’re happening. Even inconsequential events take on a significance that is personally threatening. This makes it hard to know what is real. Although one can test one’s sensory perceptions by, for example, asking other people, it is much harder to objectively test one’s beliefs about why something is happening, especially when you don’t feel you can trust what other people say.
For example, a stylishly dressed, attractive young woman approached me on the street one day in downtown Santa Cruz and bluntly said “it’s all been a plot”. It seems that there had been a conspiracy to rob her of her money. She explained it at some length while I listened in awestruck fascination:
She had a book checked out of the library, and meant to return it on time, but a diversion created by the conspirators delayed her. When she finally returned the book, she was assessed a fine. As evidence of the plot she cited the helicopter that flew overhead, spying on her as the left the library.
Anyone can have an unexpected delay and be charged a fine when they return a library book late. Helicopters fly over Santa Cruz all the time – I have no doubt that she really saw a helicopter. But what was special in her circumstances was why she was delayed: she did tell me what happened (I’m sorry I don’t remember) but was convinced that the delay had been caused by those who plotted against her. Many people see helicopters fly overhead; what was special for her is the reason she felt the helicopter to be there.
I don’t actually have such a hard time distinguishing most of my paranoid delusions from reality. It’s because they’re all so ridiculous – I really have spent a lot of time worried about the military coming to attack me. It’s not that I hallucinate my attackers. If I look I can see they’re not there. But when I turn away I feel their presence again. I know very well I experience paranoia and I try to tell myself it’s not real, but I’m afraid that simply knowing it’s a delusion is no comfort at all.
As I said I often feel the fear from my experiences before I have the experiences themselves. People try to tell me to ignore the paranoia but that doesn’t help – first I feel panic, and only then do I think the men with guns are out there waiting for me.
The only comfort I can find is to face my fear. If a Nazi Panzer division is tearing up my front yard, the only recourse I have is to steel my courage and go outside to look for them until I’m satisfied they’re not there (I have to search carefully – perhaps they’re hiding in the bushes). Only then does the paranoia subside.
Walking around Pasadena late in the evening I was discharged from Alhambra CPC, I came across a large white stone, about three feet across and fairly round. There were some wrinkles in its surface. It looked just like an ordinary stone, but I knew it wasn’t – it was someone waiting for me, crouching on the ground, and I feared him. It didn’t look like a real person at all – it looked like someone wearing a very clever stone-like disguise.
I stood there paralyzed for some minutes, unsure of what to do, until I summoned all the courage I could muster – and kicked the stone as hard as I could. After that, it was just a stone.
Now about the little joke with which I introduced this section. Everyone, even perfectly sane people, have challenges they struggle against. You don’t have to be paranoid to have enemies. Perfectly sane people get robbed, beaten and even murdered all the time. Probably the worst part of all about being paranoid is when the paranoid has a real enemy, and that enemy uses the paranoid’s illness against them. You might beg others for help, but the person who is trying to hurt you is easily able to convince them that your complaints are just delusions, and so your pleas fall on deaf ears.
There is a very real stigma against mental illness in our society. Stigma can kill – I once received word from the wife of a European diplomat that his doctors refused to treat his heart condition because he was manic. He died in the hospital of a very real, unimagined heart attack.
There are people who harbour a deep seated hatred for the mentally ill for the simple fact that we are different. And these people do grievous harm to those who suffer, in large part by using the symptoms we exhibit to convince others not to support our cause, to convince them that the hatred we sense from them is all in our heads.
I have been at the receiving end of some of the worst of this stigma. That is why I write web pages such as this, to promote understanding in our society so that in a hopeful future day the stigma will be gone and we can live among you as ordinary members of society.
One evening as I was walking across a parking lot at the California Institute of Technology, I looked up to see a Yin-Yang symbol in the sky stretching from horizon to horizon. Shimmers of energy radiated from Mt. Wilson to the North. I felt a deep chord resonating through my body, the vibration of the Universe penetrating deep into my bones. I was as tall as giant striding across that parking lot that evening.
At that instant I Knew. I knew my Purpose.
I had been walking to my weekly appointment with my therapist in downtown Pasadena. I hurried on to our meeting, and when I arrived I excitedly explained my revelation to her.
“Mike,” she replied, “you’re not making any sense”.
For a while after I cracked up at Caltech, and every now and then after that, I would see things like Yin-Yang symbols in the clouds. I would see other things too, like the energy waves from Mt. Wilson, which at the time was a powerful symbol for me. Sometimes the Yin-Yang symbols were animated, and would spin. The might be recursive, with smaller Yin-Yangs in each of the spots, and so on ad infinitum. I found that I could see them if I stared into the snow on a television set that wasn’t tuned to a station.
After I dropped out of Caltech, I started pursuing various artistic endeavours. I learned to draw from Betty Edwards’ Drawing on the Right Side of the Brain, and would construct crystalline latticeworks from painted wooden dowels.
I started to teach myself to play piano. I had a friend show me a few basic chords, and then I would just bang on the keyboard randomly until something that sounded like music came out. All the pieces I can play now I composed myself through improvisation – I still can’t read music. Much later in Santa Cruz I took lessons from a wonderful teacher named Velzoe Brown, and learned to play quite a bit better, but still find interpreting musical notation difficult and tedious.
And I first got into photography in a serious way that Fall at Caltech. A housemate lent me a nice SLR camera, a Canon A-1, and I would walk around campus and Pasadena taking pictures. My sense of sight was vivid in those days and I found that photography came naturally. The expensive Canon could accurately meter a 30-second night exposure, so a great deal of my photos were ghostly shots in the dark. I still enjoy night photography.
I would photograph my hallucinations too. I would try to anyway, only to be disappointed that they didn’t turn out when I got the prints back from the developer. However I can see even now where the seeds of my visions lay in the photographs. For example I would commonly see Yin-Yang symbols graphically floating in the sky, but in the photographs now I can see the hint of shapes in the clouds where one could easily imagine a real Yin-Yang.
Imagining what they see in clouds is a common game among children. But I would take it an extra step, as the shape would take on a stark reality that didn’t look like a cloud at all.
Eventually the visions in the sky went away, but for much longer I was bothered by illusions that I would see out of the corner of my eye. Lots of people catch glances of things that aren’t really there, that go away when you look straight on. But in my case they were rather more distinct than I think most people experience.
My illusions also are based on real objects. The most common (and bothersome) illusion I have is to see flashing police car lights where a real car has a luggage or ski rack. This would combine with my paranoia to give me the urge to dive into the bushes when such cars would drive by.
Risperdal is effective for me at eliminating the hallucinations. I found it very helpful in bringing me back down to Earth during my graduate school manic episode, but it is expensive and I resented taking it at the time, so I stopped for a few months. I finally decided to go back on Risperdal and take it faithfully one night while dining in a restaurant with a friend, only to be bothered by flashing blue police car lights and billowing red flames out the window to my left. Each time I turned to look, I would see only the headlights of cars driving up the street towards the restaurant.
In many ways I miss the visions. Not the squad car lights, but the many beautiful and inspiring things I saw. While living without visions is certainly more placid, it’s not nearly so interesting.
The psychologist who did my intake at Dominican Hospital in 1994 told me that in many more traditional cultures, the schizoaffective people are the shamans. If you wonder why there are no more miracles as in the Biblical days, it’s because we lock our prophets up in mental hospitals.
And my purpose? Very simple: my purpose is to unify Art and Science. In high school I had been active in the theater and the chorus, and also enjoyed literature and writing, but stopped all my artistic pursuits at Caltech because I had to study so hard. I felt the need to restore balance to my life, and I felt the need to bring that balance to Caltech itself, where I felt the lack of right-brain stimulation was damaging and depressing to both the students and the faculty.
I don’t know why that didn’t make sense to my therapist. It made perfect sense to a different therapist I saw a half a year later, just as I was about to get myself in a position to be diagnosed. I don’t think it’s such a bad thing to want to be a well-rounded person, or to want to restore balance to a society suffering from a fetishistic obsession with technology.
In the end, I don’t think it’s such a bad thing at all that I changed my major to literature.
Next: How To Deal with Mental Illness
In Part III, I will discuss what to do if you think you might be mentally ill: the importance of getting treatment as well as an accurate diagnosis, what else might be causing mental and emotional disturbances, seeking psychotherapy and how to build a livable new world for yourself.
I will explain why I am so bold as to write such things in such a public way, and finally I will cite some websites and books you can read to learn in greater depth what mental illness is and how to recover from it.