I’m diagnosed with four “serious and persistent” mental illnesses, for some reason all seem to be in remission, including what’s called schizoaffective disorder, which has so many definitions and caveats it strikes me as one of them they made up between rounds on the golf course. Mental Health Net says the label “schizoaffective” is the DSM’s “attempt to describe a disorder characterized by both the psychotic thought problems of schizophrenia, and the mood problems of depression or bipolar disorder.” My nurse said when someone like me presents a lesser blend of both bi-polar and schizophrenia they call it schizoaffective, which everyone agrees has a better prognosis than schizophrenia though it can be seriously disabling.
Whatever, terminology. We all have fun playing with words, but when I call people names they give me anti-spychotics to knock me out. I haven’t totally denied this label, schizophrenia runs in my family, and the more I compare schizoaffective with the other constructs the more sense it makes to me specifically. Which may mean I have more to learn til I reject it altogether, but for today, it listens.
I have known the tormented and raging psychoses, and I’ve known a profoundly creative and stimulating altered mental state linked to the schizoaffective construct. I’ve been convinced that I was time-travelling, that other people are software programs, or that I was stuck inside a movie with people who didn’t realize we were actors. Safety pins become metaphors, that coffee cup is a symbol I am called upon to interpret. Ordinary things can’t hold my attention, I am able to take in new information but the meanings are different and I insist on their significance. I am generous with explanations and accusations about the centrality of all that’s denied, I talk and talk about patterns and connect disparate elements, I blow a gasket because so much urgent material is being overlooked, I animate the inert, make people more, make up words that want to be invented, I believe there is a conspiracy, and am obsessed with bringing it to light, nothing people say makes any sense, I listen to Dylan constantly, channeling his lyrics as explanation for everything.
These relatively mild delusions contain glimmers of insight. Dylan was sending hidden messages. Word salad can contain titanic perception of universal truths that are found only in psychoses, and that’s metaphysics, it’s like a command from God propelling our urgent attempts to describe what others fail to comprehend.
Not many will sit with someone who is experiencing madness, if they lack the supplication required for the privilege of discovery. It takes an open mind and heart. What people discover tends to surprise them.
I may be romanticizing psychosis, but someone has to. It’s not a sweet ride, but we can acknowledge its dangerous gifts and respect them as a matter of fact. If not, how come? You must have your reasons. Darkling, I listen.
Meanwhile, check this Times account of psychosis by a woman living with schizoaffective disorder:
Earlier this year, I dis- covered to my horror that I was personally responsible for the flooding of the banks of the River Danube; they were reporting it in the news.
I first became ill with a long bout of suicidal depression around the age of 7. But as a quiet shy child I kept it very hidden. At 16 I was finally taken to a psychiatrist: I was openly suicidal and it was all too clear that I was acting strangely. I became withdrawn and paranoid that I was being watched and that the neighbour was in league with the Devil. I would meow like a cat; my reasoning being that people tend to take care of cats. It became increasingly difficult for me to eat with my family. Everyone thought I was just being awkward but the noises made by people eating were awfully amplified by my over-acute senses.
I had periods of sky-high elation and vast energy. My sleeping pattern changed drastically: I started sleeping during the day and stayed up all night, or I would stay up for days on end. My weight dropped rapidly as it seemed to me that I didn’t need to eat for I created my own energy. I was continually aware of having committed some horrendous crime. As a result of my first major psychotic episode at the age of 19, I was Sectioned under the Mental Health Act and remained in hospital for just under a year.
During this time schizoaffective disorder was diagnosed in me. My hospital experience was not helpful at all. I was told by my psychiatrist that I needed to grow up and get a boyfriend. My parents were also held to blame for my illness.
The staff members rarely came to talk to me. A nurse who did sit down with me told me as a fellow “Christian” that I was going to Hell because I was a coward for contemplating suicide. My toiletries were taken from me as I might have used a sharp edge to harm myself but my shoes with their long laces were left with me. I was harassed by a male patient on the ward. This was six years ago.
Schizoaffective disorder is a combination of a mood disorder (major depression or manic depression) and thought disorder (schizophrenia) with at least two weeks in which only schizophrenia symptoms occur.
Depression is unreasonable, I have found. The ferocity of the attacks still shocks me. It hurts just to breathe. “Some inexplicable stressure is heavy on my brain. In too much agony to move, in too much agony to stay still. I know a mind taut with pain.” At these times I think of death without pause, without necessarily being suicidal.
Unable to sleep properly, I watch myself feel shattered.
With hypomania, a milder form of mania, the feeling can be magical, fuelling itself with snowballing sleeplessness. “Now I am full of song. I shall lighten your darkness and lighten your load! I am a lightning conductor. I conduct the music of the cosmoscilate.” When I’m up, I’ll be up all day and all the night. I become an exaggeration of everything. I once took home a triangular roadworks sign because I believed it was the Trinity, though I put it back later. Often I have given away large amounts of my savings, for reasons such as I have been Saved, or because I have to conquer world poverty as I am the king of all things. I can also become very irritable, argumentative, intrusive on others and extremely anxious in a high mood, pacing for hours. But, eventually, what goes up must come down again.
Schizophrenia is believed to be a spectrum of disorders of the brain. According to the World Health Organisation, it is one of the ten most debilitating diseases affecting human beings. While there is no cure for schizophrenia, it is a treatable and manageable illness.
However, it is still not known why some of us do not respond as well to medication. Experiences such as hallucinations, delusions, disorganised thinking, speech and behaviour are classed as positive symptoms.
“You’re such a fool, a loser, idiot! They know your every move.” The voices I hear are abusive and critical. They can also be bizarre: “We are stoplights”, “You’re just cheap chocolate”, “Crazy lazy point-blank bicycle”. They produce a running commentary on my day-to-day actions or talk about me to each other. “Slash your wrist!” Worn down by the commands, I do as they say. I wrote in my diary: “It will be important to break the language barrier so all will underwater the manage the message.” I once sewed nine buttons on to my sleeve because someone said “nine or so” in conversation. It seemed terribly important to do so. It is not uncommon for people with schizophrenia like me to make up new words.
It distresses me that my thoughts are broadcast on the radio.
My DNA contains the whole of the Milky Way. I am constantly being pursued by enemies and lovers. I have scissored a mark from my skin, knowing it to be a tracking device planted by the Government. There are no locks, no devices to prevent intruders of the mind. There can be the frightening sensation of insects crawling beneath my skin. My food can suddenly turn into maggots. The round of my skull is the dome of the heavens with the world moving both inside and outside my head.
When my mother handed me an orange, it became a new planet. Someone else lives within my skin like a squatter; at times taking over my movement, throwing out my thoughts or my arm.
However, schizophrenia is not split or multiple personalities. The trouble with schizophrenia is that it turns fiction into reality, and reality into fiction. In jamais-vu experiences, common in schizophrenia, I forget how to use the kettle or how to tell the time. I am a stranger in the landscape called home. “I am the new word. You may refuse to see me but I shall always see you. For I am Love.”
Schizophrenia may not directly cause one’s death but it does take one’s life. There are negative symptoms, which include: being unable to express emotion, deterioration of self-care, lack of motivation, poverty of speech and social isolation. “Apathy is dull and heavy and tedious and empty. I can’t think. My thoughts have fallen through.” Now your eye has a look like the light has blown.
You are here but you’re already gone.
And can you tell a stare from a smile?
And can you feel a cry from a song?
Cognitive symptoms describe problems, such as poor concentration and memory; difficulty following instructions, integrating thoughts and behaviour, and responding to stimuli. Often, my mother-tongue becomes a foreign language; I am temporarily unable to understand what is being said to me.
I have tried drinking large quantities of water to clear my head for water is clear. Sometimes I cannot tell whether it is my breath or the breeze that stirs the trees. It is difficult to distinguish where I end and where the rest of the world begins. This is known as altered sense of self.
I have been on many antipsychotics, mood stabilisers and antidepressants with varied results. Weight gain, drooling, hair loss and tremors in my hands have been some of the side-effects, and the list goes on. I have tried olanzapine, risperidone, clozapine, haloperidol, quetiapine and abilify, carbamazepine, lithium, sodium valproate, nimodipine, Prozac, lofepramine, sertraline and citalopram. On risperidone, I developed Parkinsonian-type symptoms (extreme stiffness and shaking) and vomited everything I ate for a week. The stiffness meant that I could not write with a pen or even reach to put on my own shoes. With clozapine, my white blood-cell count fell dangerously low — a simple cold could have proved fatal. Olanzapine caused me to put on a large amount of weight.
There have been medications that have done nothing for me and some that have stopped working over time. It is a fine balance between benefits and side-effects, and involves a lot of trial and error to find the right combination. To this day, I still haven’t. The voices tell me the medication is government mind-control — but if I stop taking it I know I really will lose control of my mind.
What does schizophrenia look like? It takes the shape of one’s hopes and fears and distorts them to grotesqueness. It convinces me that my family and friends are against me in spite of reassurances to the contrary.
At the moment I live with my parents, unable to leave the house for fear of being shot by the snipers on house rooftops, or being snatched by government spies to be taken to a testing facility. I am being monitored night and day via satellites and aeroplanes. I have few friends and find it hard to concentrate on reading or TV programmes.
On days of energy, I paint pictures. Other times, I get up only to sit staring in a chair, or pace to and fro endlessly. It’s either extreme restlessness, in which I can do nothing but walk in circles, or complete loss of drive, in which I can do nothing. How do I see my future? I don’t. I am forced by unpredictable mood swings and bouts of psychosis to live day to day, sometimes hour to hour. Today, however, is a good day; I live for days like this.
A mind taut with pain
Words and paint by Philippa King
She can be reached at