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A mountain in my mind

The Times. August 7, 2007

Philippa King, who suffers from schizoaffective disorder, captivated Times2 readers last year with the power of her writing. Now, as her book is published, she describes how she fights the stigma of mental illness

Last night, I heard the Holy Spirit screaming. I listen to loud music to give me peace of mind.

Almost a year has passed since my article on my life with schizoaffective disorder was printed in times2. Roughly speaking, the definition of schizoaffective disorder is schizophrenia combined with a mood disorder such as manic depression (bipolar disorder).

The response to the article was staggering. I was encouraged to keep writing. The truth is that I cannot stop writing. This has led to a book (A Mind Taut with Pain) which is soon to be published by Chipmunka. The intention of the book is to help people to understand those with schizophrenia-spectrum disorders and also to give support to people who share my battle. When I am well, I continue to paint. I have a website set up now to display my work

Schizophrenia may be accompanied by an unusual and obsessive preoccupation with religious or spiritual matters. I read that Jesus said, with faith, one could make a hill throw itself into the sea. Later I see on the evening news that several hilltop houses have fallen into the sea as the cliffs beneath them have crumbled. ?Seek and you shall find? ? a person with schizophrenia often spends his whole life searching. Delusions grow like ivy.

I have recently been in e-mail contact with Stuart Baker-Brown, who has high hopes of becoming the first person suffering from schizophrenia to climb Mount Everest Surely if I can move a hill by pure thought, it cannot be so difficult to get a man to a mountain? Unfortunately, getting together the financial support for such an expedition is proving a real challenge. Parties have withdrawn support without explanation. One wonders whether he would have as much of a struggle finding funding if he was a cancer survivor or if he had lost a limb. It appears he has two mountains to conquer.

So what exactly is stigma? In Ancient Greece, people were cut or burnt with stigmata or bodily signs to mark them out as different. Though no longer physically mutilated, people with brain disorders such as schizophrenia are locked outside society by negative attitudes.

Once excluded as different, it is difficult ever to be accepted. People with schizophrenia are often reluctant to tell others that they have the disorder for fear of losing friends, employment or housing opportunities. Schizophrenia is hard to live with and hard to understand.

?I am all sighs today. I have two feet, size six. I have a spring in my step. I like the springtime. There are 12 steps to get downstairs. Everyone stares at me.? Eccentric behaviour, dress-sense, and strange ideas and speech single out schizophrenia sufferers as different from ?normal?. ?I am going through a bad patch. They do make patches to help people give up smoking. There is no smoke without fire, they say. I was alarmed at the ferocity of the last depressive episode I suffered. I don?t like the bright lights of the city. Both my sisters are very bright.?

Many individuals with brain disorders end up homeless and living on the streets. Hardly surprising, since facing stigma in daily life can make even seeking help difficult. It is rare for a person with schizophrenia to commit a violent crime, but when it does happen, it is usually the result of not taking the appropriate medication. Not receiving the right treatment only leads to greater suffering all round. Stigma also leads to a ?why try?? attitude on the part of the stigmatised, therefore hindering a person?s life prospects.

The antipsychotic, antidepressant, antianxiety and mood-stabilising medication I take hold my days together. However, they are far from completely effective at combating the hallucinations, delusional beliefs, mood swings and loss of the ?spark? of life.

?I know the silence will be broken soon by the oncoming voices the way my brain is twitching and jerking upwards. ?Fatso gazpacho. You?re a car crash. You?re corned beef hash. You?re an ashtray.? ? But I have people who care for me and I am at least able to function even if not on a social level. ?I cannot think what it is I am meant to be feeling. I know I am loved but I cannot feel it. I cannot feel anything except that I must be out in deep space for nothing to reach me from home.? Indeed, I could think myself extremely fortunate, were it not that I have bad dreams: the teaching staff of the science department at my old school are poisoning my sleep.

I strike myself in the head with a hammer left on a work surface because my thoughts are jammed. We tapped the stuck hinge of a door and it worked like a dream. The occupants of a low-flying helicopter take control of my movements, causing me to slice open my wrist yet again.

Someone or other is messing with my time frames. ?My head is shattering. It is blowing apart. I cannot bear it.? Often I feel I have fallen out of love with life. The desire for my own death surfaces from time to time: ?I could be locked away for the thoughts I am having.? ?It just does not make any sense. I have everything and everything to look forward to but the death wish is so strong and will not leave me.? Many times, I am forced to wear a hat night and day in an attempt to muffle my shouting thoughts. The voices I hear mock me and say I must be the ?second Shakespeare? because of my excessive drive to write. In fact, the spirit of Shakespeare spoke to me twice: ?Tambourine Cymbeline? and ?The moth shall eat even kingly cloth?. Too true.

Schizophrenia, unlike people, does not discriminate.

Now, I believe my mother is the universe and I am merely a figment of her vast and vivid imagination. My younger sister is expecting her first baby. This caught in my thinking until it seemed quite plain to me that I would shortly die and be reborn as her son or daughter.

Either that or she is carrying the Christ child. ?You?re just mediocre, yellow ochre, yellow-bellied, lily-livered coward of a living thing, hot mustard and ham, damn you, damn you . . .? Another part-time delusion I am aware of suffering is that I am the Devil. I came to this upsetting conclusion after realising I am outside of time ? I have no time. Actually, I am getting younger by the day.

As I have liveD backwards, I must be the Devil. Schizophrenia plays on one?s insecurities and magnifies them out of all proportion. Delusions have an internal logical thread of their own: they make sense within themselves. ?I thought I had broken my back for I could not feel where I was in space.? My insight varies. There are times when I am able to tell that my ideas are not based in reality but even then, it is a hazy area. When I am more acutely ill, I cannot be persuaded that I am wrong. Schizophrenia is really a disease of perception. Nonetheless I continue to take the tablets, for I cannot bear to go back to the old hell. ?A large insect has laid its larvae in my throat whilst I was sleeping. They are feeding on my words!? Lack of insight (ano-sognosia) or the inability to realise that anything is wrong is a problem for many people with schizophrenia. This is another reason why some refuse to seek treatment.

The negative symptoms of schizophrenia are characteristics which should be present but are not. Inability to feel or express emotion, social withdrawal, poor self-care, lack of drive or interest, and poverty of speech are all negative symptoms. ?My feelings are blunted, quiet, cut off. I cannot feel how I used to be. Thoughts come and I do not know them as my own, or they do not come at all and I do not know them.? ?I am suffering a little self-neglect . . .? From your eyes water drops.

You do not see me but still I hold on to your hand, though who can reach you here?

Negative symptoms also create the impression of the person being difficult, lazy or aloof; and set the sufferer apart from normal society. Because of stigma, many sufferers find it even preferable to be labelled as such, rather than be thought of as ?mentally ill?. ?It is as if I am travelling to the moon ? or heading out some way ? the world is getting further away and I am getting smaller and smaller.? Schizophrenia is a biological disorder of the brain. It is neither contagious nor caused by personal weakness. Sufferers are usually afraid of other people and are more likely to be the victims of crime than the perpetrators of it. Why, then, should we be so frightened of each other?

Seen as shamans or shunned; hailed as geniuses or cast out as murderers ? most of us with schizophrenia-spectrum disorders are quite ordinary in person, just with extraordinary experiences. We are in the same place but we see totally different things. Sufferers, such as John Nash the mathematician, who have found fame through great works, have done so in spite of ? and not because of ? this illness.

I wish Stuart Baker-Brown the very best of luck in his ambition.

Perhaps overcoming the barriers of the mind is the biggest mountain we all face.

What is schizoaffective disorder?

Schizoaffective disorder is a mental illness in which mood changes, such as depression, alternate with schizophrenia, where parts of the brain responsible for emotion and sensation stop working properly. The schizophrenic episodes are more pronounced, otherwise it is called manic psychosis.

Symptoms are panic, anger, depression, elation, withdrawal and psychosis (hallucinations/delusions).

It affects 1 in 200 people, usually starting in the late teens and early twenties. High achievers and women are more susceptible. Drug abuse can trigger a first episode.

It can be treated though medication and talking therapies. Posttreatment relapse rates can be 50-60 per cent in stressful family environments; family support can reduce this to below 10 per cent.

Premature death is two to three times as likely: 30-40 per cent attempt suicide, normally when the symptoms are actually beginning to subside ? and about 10 per cent succeed.

For advice: Rethink 020-8974 6814; Mind 0845 766 0163; Sane 0845 767 8000; Young Minds (for children and teenagers) 0800 018 2138
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