The Schizo-Stroller

When I first went into hospital I was immediately put on Haloperidol. I’ve always called it the hammer blow cure for psychosis as it immediately subdues the patient’s, in this case my, mind. It is one of the medications justifiably called a ‘chemical cosh’. This was temporary while they diagnosed me. But it did calm me down. Good then? Except it nearly killed me.

Haloperidol has a severe side effect that can involve the muscles seizing up, to counter this medication used to treat Parkinson’s disease needs to be taken. I wasn’t given high enough doses of this secondary medication. The first time it happened my leg started to seize up then my head started to be twisted to the side, the nurses gave me an injection and my muscles relaxed. A few days later my leg started to seize up again, I went to the nurses station and informed them. Wait in your room, someone will be there soon, I was told. I remember being made to feel I was wasting people’s time. I limped to my room, and waited. No-one came but when I tried to stand up from my seated position I couldn’t walk. Then my neck started to go.

Fortunately for me my sister came to visit that day. When she came into my room she found me with my head being yanked back by my contracting muscles and I was struggling to breathe. She legged it to the nurses station yelling ‘My brother’s dying’. The next thing I knew I was waking in some nurse’s arms. When I had been injected with the anti-Parkinsons drug I had passed out as my muscles relaxed. But my sister had saved my life. I was soon moved to Sulpiride.

Sulpiride lessened my symptoms drastically but didn’t get rid of them, I was still paranoid, believed I was in telepathic connection with people and heard voices. Accusatory, negative voices. Just not to the extent that I had been. But it was enough to convince me that medication makes a difference. To me anyway. But I did my research, and Sulpiride is not nice either. It too can cause Tardive Dyskenesia (although not to the extent of Haloperidol), this is a side effect that can cause involuntary movements, that, worryingly, may not disappear after the drug is stopped. As I was still in my mid-twenties I had no desire to remain on it too long. I went to my consultant.

As an educated, eloquent youth who had done his research the consultant happily agreed to change. I would like to say it was a negotiation but it was more like this:

ME: I would like to change my medication.

CONSULTANT: Yes, Sulpiride has some terrible side effects.

ME: I would like one of the newer style medications.

CONSULTANT: Yes, of course, they have far fewer side effects.

ME: I have been looking some of them up and…

CONSULTANT: Yes, yes, looking at your notes you should go on Olanzapine.

So I ended up on Olanzapine. It lessened my symptoms as much as Sulpiride had. It had mild anti-depressive effects. I thought I was happier. It made me fat. I went up to 18 1/2 stone, my Cholesterol went up to 6.6.

But I stayed on it for over 7 years. In that time I remained relatively stable. In that time I also started seeing a counsellor. When I saw my counsellor I explained my situation and said I don’t want to talk about my illness, my symptoms, my voices. I want to talk about my life. I want to sort out my life. He agreed, I sorted out my life. I finished a Sociology degree, I started a business, ended it and got on a Masters, in Social Development. I joined a hearing voices group too. Things were going well.

But I started to deteriorate.

Then I got a new consultant. I discussed that I was stable but still not well. I discussed that I was unhealthily overweight. I had tried to join a gym but I had got too many voices and even though I went three times a week I couldn’t shift any weight. He suggested that my body was getting used to the medication. He prescribed me Quetiapine. It didn’t have weight gain as a side effect.

I became very ill. Within days of titrating off Olanzapine I couldn’t leave the house due to telepathic persecutory voices. My sister had to do the shopping. My mother phoned the consultant. A prescription for Olanzapine arrived in the post. Within days I returned to my previous stable condition.

But it was agreed I couldn’t stay on Olanzapine, the weight was a danger to my physical health as well as to my psychological health – I may suffer from psychosis but I still have everyday insecurities as far as my weight is concerned, and this wasn’t a ‘natural’ weight gain (i.e not purely over eating and lack of exercise). And above all else it was not working as well for me.

I ended up on Risperidone. 4mg. I still take it today, at a lesser dose. I improved. I did however change my Masters to Social and Political Thought. As much as I had romantic dreams of helping people help themselves out of poverty in far flung corners of the earth, the thought of having a breakdown like the one I’d just had miles from a hospital if I lost my medication terrified me. My tutor was very understanding he did try gently to persuade me that there were other less drastic forms of aid out there and at home, but my dream was broken. And I had the fear. Besides when I had dropped out of university many years ago, due to my first breakdown (brought on by parental divorce, tragic romantic break up, and heavy substance misuse but not a psychotic breakdown), I had been studying Philosophy and Politics. This was another easily substitutable dream. So he kindly helped me transfer. The Social and Political Thought department were most welcoming, they still are.

In that time I realised that medication did have a significant effect on me. However during that period I got to know the psychologist who ran the hearing voices group, he introduced me to the work of Romme and Escher. I realised that there was a life for me outside one maintained by chemicals. That the counselling had done wonders, my counsellor, to whom I am forever grateful (my only regret is that I didn’t deal with my boarding school experiences with him, I refused to, a pity as he doesn’t practice anymore and he was an expert in the area. But I wasn’t in the right place at the time and to his credit he recognised that and didn’t push me) helped me sort out all the day to day problems that aren’t covered by my treatment for psychosis and by medication, and I was able to rebuild my life. Granted the medication kept the crap off my back whilst I was doing it but it was living a life that has improved things to the point where now I am married with a child and about to start a PhD that has been the most important part of my recovery.

I realised that hearing voices is not that abnormal. It is not ‘wrong’ as the biological, geneticist, behaviourists and what have you would have you believe, but it is an expression of what has happened to me and it is how my mind has learnt to cope. That the delusions are a form of trying to understand what has happened to me and why I find it so hard to relate to a world that refused to relate to me. That I need to understand what has happened to me.

It is for this reason I have decided, for myself, that what happened to me was a crisis of being-in-the-world. A true existential crisis if you will. I don’t mean some  student worrying about the meaning of life reading Sartre or Heidegger in Starbucks. This was a crisis that had a psychotic manifestation. There is of course a continuum from that student and everyone else to what happened to me. But this was a break, a fracture with meaning as it related to the world outside. But it was still about my being. And my being cannot be wrong. No-one’s can.

As I said in an earlier post I will be writing about my visit to the First World Hearing Voices Congress and this is actually my first post on it. Whilst at the Congress I heard first person accounts from many voice hearers, many who have had far worse experiences than me and many who have stopped taking medication. All have recovered.

One of the common themes was that although medication can help alleviate symptoms it also cuts one off from one’s emotions. To be in touch with your emotions is what is required to recover. Expecially if the reason you became ill, had a crisis, was to do with how you related to them in the first place. If you are now chemically cut off from them how can you recover.

I went to a workshop by a guy called Wilton Hall who runs a project called the Icarus Project. He presented a workshop called Coming Off Medication: A Harm Reduction Approach. The harm reduction approach is not pro or anti medication it is supposed to help people make informed decisions. As I have written above there are benefits to medication, at least there have been for me. At the very least they have allowed me to get to the place where I can consider coming off them. As paradoxical as this may sound it is a paradox created by the current orthodoxy. When I had my breakdown I was suffering, the most humane thing seemed to be to stop that suffering, and so I was prescribed medication. And for me it worked. But when this is treated as the only course of treatment one gets trapped in a chemical diagram. As it happens I paid for my counselling myself. And  was lucky to have a good CPN who got me into a hearing voices group run by a progressive psychologist who is one of only two in the whole trust willing to work with psychosis on this level.

Medication keeps me stable, it doesn’t cure me, it never will and it doesn’t help me recover. I have to do that. I would like some help but otherwise I’ll do it myself. But support is good. Everyone needs support. It would be nice if there was more in the NHS system.

The Harm Reduction approach to coming off medication means reviewing the costs of continuing medication and the costs off continuing crisis. As it stands right now, I would like to one day come off, I am not going to go cold turkey, that is idiotic and I know of no responsible movement that would advocate it. But I would like to feel again. I want to complete my recovery.

Thankyou medication, but your side effects are too many. I also know your effects may not last forever, I have to do other things to recover. I cannot remain in a permanent chemical limbo. You have helped me get to where I am now but now we must enter our long goodbye.

I am no longer with a psychiatrist, my GP administers my medication now and as it happens he reduced it to 3mg a while ago. I plan to discuss this with him, reviewing this over the many years (that’s right it will take years, or that’s how I feel right now). I also plan to access as much support as possible. It is out there. You just have to find it. Not always easy for someone whose life skills have been destroyed, but I have rebuilt mine.

For anyone who’s interested by this there is this book:

Coming Off Psychiatric Drugs

and Mind have this advice.

You can download the Creative Commons Licensed Icarus Project’s Harm Reduction guide to Coming off Psychiatrict Drugs here

I have just returned from the First World Hearing Voices Congress. I plan to post on it over the next week or two, however I have to take my laptop in to be repaired so this will wait until my computer’s own recovery.

However topics I will be discussing will be John Read’s argument that there is now no longer a likelihood that a genetic cause for schizophrenia will be found. Is this really the end of the bio- bio- bio- model?

What it means that the cause of most forms of psychosis are experiential.

The end of schizophrenia as label and illness and it’s implications.

Simon Reynolds conducts a brief history of the use of theory in music writing and concludes it gets you high.

I don’t need drugs anymore because I have my friend sweet psychosis but I don’t mind getting intoxicated on a bit of theory.

On 8th October upstairs at the Open House on Springfield Road, Brighton from 7.30pm, Dominic Fox will be reading from his book Cold World: The Aesthetics Of Dejection and the Politics of Militant Dysphoria.

£4 on the door.

The next airing of The Contemporary Arts Show on Radio Reverb will involve an interview with Dominic Fox, author of Cold World: The Aesthetics of Dejection and the Politics of Militant Dysphoria and writer of the blog Poetix

If you are in Brighton you can catch it on 97.2fm or otherwise on www.radioreverb.com on Sunday 20th September at 1pm GMT or Wednesday 23rd September at 7am.

As well as the interview there will be the Brighton contemporary arts listings and music by Lukas Ligeti, Spiral Jacobs, Xasthur and Vitamin B12.

It just dawned on me.

Why I particularly enjoyed this summer…

There was no brain dead, follow my leader, populist major international sports competition.

No outward nationalistic fervour underlying the liberal veneer

Didn’t it seem so nice and peaceful!

Reading this article from The Impostume on Trainspotting I can’t help thinking I’m supposed to be Renton, but then a) the intentions of the film makers are that one does so, but then this is Impostume’s argument as to whom the film is supposed to appeal to, and b) having a conversation with a friend a while ago I discovered that the reason he could still listen to a lot of angry old american hardcore and I had to stop was that he identified with the singer and aimed the hate at the others, I on the other hand always wondered if I was justified in doing so as whatever fault the singer was finding in others, whatever song he/ she was singing could be aimed at me – forever the anti-hypocrite.

But from a personal point of view, as a middle class, public school educated boy who delved into the underclass of drugs and low-rent housing I should be Renton, except I never got the Blairite dream, I didn’t choose life, I wondered what it was and never quite got out. Something went wrong.

There’s a certain determinism in the idea that one is always a member of the class one is born into. A facet of both Conservative and Marxist thinking. As another Social and Political Thought alumni suggested to me when he found out I was working as a taxi driver, I would never be working class, I just can’t walk the walk or talk that talk and vice versa, the working class, supposedly, find it so hard to get it at Oxbridge. Somehow I feel like Bertolt Brecht. Never escaping the bourgeoisie even after over 15 years on disability benefits, I write as an outsider. To everything.

However there is also the meritocratic liberal belief that if only you try, try, try, you work hard enough, you’ll surely make it. And in shows from Dragon’s Den to the Apprentice we see this belief. But the dark side of this meritocracy is that if you do struggle, claw your way up and shit on your friends, you will have earnt it on your merit. That the success of capitalism’s anyone can do it, look some people do, myth relies on so many others failing and not quite making it. Capitalism is built on failure not success. So if you have made it on your merit you are better than everyone, or supposedly you are. So comes middle class guilt. Gazing at the poor to understand why you have done so well and they haven’t. That’s the meaning of a meritocracy. If you merit it you’re better than those who don’t.

There’s the side of Secret Millionaire and How The Other Half Live, allowing us to sort whether some of the poor are undeserving whilst others are deserving and might just make it with a little help. That’s the good old middle England, British way.

Then for the rebellious youth, there’s the repackaged American Dream as The Impostume points out. Capitalism doesn’t get its cultural innovation invigorated off the backs of the working class and underclass, sucking it up like a giant vampire, no it is the source and justification of the very ethos, again there are deserving and undeserving, the deserving are those who know life is tough and sometimes we have to shit on others. But don’t forget anyone else would do the same, we are after all purely self interested, a positive view of human nature is deluded and you’d better remember that. The deserving are those who knowing this take their chances where they can, and make the most of it. Do to others as you have had done to you, all your life, forget camaraderie, friendship, family, that’s what has dragged you down. Once you’ve made it you’ll have a chance of creating an ideal view of those, well family anyway that you can impose on others as a morality.

If a junkie can get out then so can I. If I’ve already got out then I can look back and say “oh, yes, just after university I was on the dole, smoking dope. I didn’t want to work but then I got my act together and now look at me I earn 100 grand a year, I have all the cultural capital that allows me to state I know what it’s all about. The underclass are just lazy and feckless, they just don’t want to work. I know I’ve been there.”

Then there’s Plunkett and Macleane… if you don’t want to play the game we can always live the life, if only to rob the fuckers, and when we get found out run off to America, heroes.

You can only be sold freedom if you’ve had it taken away from you in the first place, you can only be sold choice if you don’t have it in the first place. If you have to choose life you haven’t fucking lived.

Writing about his new book, Cold World, Dominic at Poetix wrote about an anecdotal  experience of his in which, after a relationship goes wrong, an older friend suggests he imagine himself in the frame with his former lover, then when she departs to consider what place he has in the frame. Dominic states that he couldn’t imagine himself in the frame, he exited it himself.

This anecdote was in response to the statement he made: “The cold world is, in one sense, the world in which there’s nothing left to sell, in which the promise of future satisfaction is evacuated of meaning. The image has no potency, and the system of values organised around representations collapses.” With reference to the anecdote Dominic states: “Whatever image I had had of myself before was no longer tenable. There was nothing left that could be done with it. Walk, just walk away.”

Dominic asks if this is a familiar experience. The humiliating loss of a lover, to put it bluntly, is, but I wonder if this response, is. It must be to some but thinking on my experience at the end of the relationship with my first love, again at university, with respect to the analogy of the frame I realised my response was far different. Rather than leave the frame I proceeded to destroy the frame.

As well as humiliating the experience for me was humbling and soul destroying (if the latter does not always include the former). Perhaps spurred on by the realisation that I only had myself to blame I decided to destroy all access to reason. My consumption of dodgy E’s, amphetamines and acid increased to such an extent that I reportedly turned to one friend (who fortunately still remains a friend) and said “I just need to take one more massive trip to put everything right. If I can just lose complete control then everything will return to normal.”

Lose control I would, but it would take me another three or so years.

Sometimes when all we have left is access to a cold world the realisation drives us to destroy that access. And that access is language. And boy did it return on me.

Perhaps to put this all down to the end of a relationship is glib. There was a lot more going on for me at the time. However it was the end of my romance with idealism.

As Hannah Arendt points out all action is irreversible.

Not just when destroying a frame but also when building a new one.

Only the second time we always have something to go on.

I’m trying to write this as the memory is fading but that perhaps is proper. Perhaps too, it is proper that this event occurred more than two weeks ago, so in the decaying reaches of summer before the August bank holiday that for most 9-5ers strikes the last bell of that season before the yearly drudge returns.

So here goes

My wife and I took our son to Shoreham beach one sunday, at the end of summer whilst the sun could still bake it’s pebbles. We had with us a barbeque, some lunch – a gilt-headed bream, some chicken kebabs, falafels and salad – with some water and a thermos of coffee as well as swim gear. We were slightly delayed getting there as the Shoreham airport airshow was on, however this meant that the beach was relatively free. We found a spot and set up the barbeque, and took a swim in the sea before returning to cook lunch.

The sun was hot, something that had been lacking that summer. Or seemed to be lacking, at least in the regular sense that a British summer so often has, such that a remembered hot summer, 1976 and 1990 come to mind for me, remains a rarity, the exception to the rule, so that these few become a half-remembered desire that is rarely met.

Whilst we had been barbequing, a helicopter had occasionally flying over head, the beach had been slowly filling up. Out to sea various boats and yachts were floating ready to watch the airshow. I looked to the east and saw that a building had caught fire in Brighton, smoke billowing over the city. And then the air show started, an old vulcan shot across the sky.

For those who have not been to Shoreham beach before I should perhaps describe it to better set the scene. Shoreham has a port, a small one but it still seems to be commercially viable, being the closest to London, with a small fishing fleet. There is the old town inland, but then coming out like a spit around the estuary and entrance to the port, attaching itself in a way to Lancing rather than Shoreham is the beach. Primarily consisting of shingle, and although there is a church dating back to 1913, most of the building here dates from the 1920s on, much of it from the 1970s. Primarily residential, the most prized are the beachfront houses, all idiosyncratic yet never failing to have broad vista windows to take in the beach views. Most are hard brutish and squarecut, yet very beautiful in that english south coast way.

Sitting on the shingle beach, barbeque smoking, soft moist white fish with a slightly charred skin in my fingers, I heard the boom of the new Eurofighter, followed by the whir of an old spitfire. I looked up the beach at the fellow sunworshippers, the young teenagers with their sea kayak, the lone woman bathing topless, secure in the parochial congeniality, the elderly group of friends coming up the beach from their dip in the sea. I looked out to the sea, small little fishing boats and expensive yachts bobbing about, anchored for a private view of the show. I looked west away from the air show to the smoke framing Brighton like it had just been bombed. There was my 18 month old son falafel in hand, sitting in my wife’s lap, smiling at the aircraft. The helicopter, evidently now not part of the air show but monitoring the beach clattered past again. Up the beach were weather-beaten but expensive homes for the beach set. It struck me how surreal the whole thing was.

Realising his obsession with the dark heart of suburbia, seaside leisure complexes and aircraft, the experience became for me an homage to J G Ballard. Nothing outside his writing had quite matched this moment but here it was encapsulated in a sunday afternoon.