Does it ever feel like things are spiralling out of your control?

“The world is too big”

It’s become a real struggle lately to get through the days. I don’t seem to have the capacity to deal with everything that’s going on. Yesterday my brain got to a point where it decided to pull the covers over its head, shut its eyes and clamp its hands over its ears. I was left in a largely vegetative state; I was in no way anxious or unhappy, I was just numb.

My sister took me for a walk to see if that would help me feel more myself. Although I could look around and focus on the scenery, I couldn’t focus on it in my mind. The same went for my thoughts; I felt empty. There was no articulation going on in my mind except the intrusive loop of song lyrics. I felt like a blank canvas.

Song lyrics have become particularly oppressive recently. They never really bothered me before but now they are bad enough as to drive me to insanity. And they are not alone. The intrusive thoughts and images seem to be getting worse. I put this down to the lower antipsychotic dose I am on now.

CONSTANT VIGILANCE!!              

It feels like an uphill battle at the moment, like I’m straining to survive. It would be so easy to let my guard down and allow the intrusions to rule me. That does worry me quite a lot. What if I start to go along with those thoughts and ideas? I know in theory that they are my thoughts and ideas because they originate from my mind but I have to keep reminding myself of that.

When I’m tired the intrusions are particularly strong and unfortunately tiredness has become a feature of late. This I put down to the meds also. I heard that people with Schizophrenia have to work twice as hard as people not afflicted to deal with their thoughts. It’s no great leap to see how even a 2.5mg reduction of a 20mg dose could make a lot of difference in this respect.

Duvet Day

How do you know if you’re going into relapse? Could it be withdrawal from social situations? Or maybe hearing voices? What about sleeping all day?

I am a member of a karate club. I used to go every Thursday. I’ve been struggling to go since my dose of Olanzapine was dropped. One week I couldn’t face the two hour bus journey. Another, I became unable to contain the new level of excitement I was able to experience as a result of lowering my dose. This has been going on for a while now. Yesterday I couldn’t get on the bus.

I spent the day leading up to the class feeling very excited about going. It was only when I started to walk to the bus stop that I felt funny. I could physically feel myself shutting down as I pushed on. It’s hard to describe what it feels like to do so. However the effect I am able to tell you about.

When I was 17 years old I took an English test. I wasn’t nervous or anxious as I opened my paper. I looked down at the question and realised that I couldn’t read it. I could look at the writing but nothing happened. I remember how odd it felt.

When the bus pulled up I had the same feeling. The bus was there but I didn’t know how to get on to it. I couldn’t imagine doing so. I don’t know why that happened – at least I wasn’t consciously aware of any reason. Somehow I couldn’t access that core part of me that does things. Despite that I felt quite lucid, though only on a surface level.

I had all the hardware but there were no programs running.

Even subconsciously an experience like this would be upsetting. Not understanding why you can’t do something just makes it worse. I spent today unable to get out of bed. I had no motivation to get up. I just felt so tired.

So that’s two off the list; sleeping and social withdrawal. Am I going into relapse? I thought I’d be conscious of some change that would signal so. But what if this is it? I can only hope that these are withdrawal symptoms and that they will disappear as I adjust to the lower dose.

It’s tough right now because I want to do so much more than I am capable of doing. I want to be able to provide for my fiancée. It kills me that I can’t do so. I feel so helpless. 

The New Messiah?

“Are you such a dreamer to put the world to rights?”

They say you’re not a fully paid up member of the Schizo club until you’ve been Jesus. Why on earth do I feel a sense of achievement that I can say I have been? For a long time I believed I were the reincarnation and the second coming.

I did try and argue; for instance I thought “hey, I have no special powers and no angel has come to tell me I am to be crucified to save the souls of man”. But a voice somewhere inside me immediately sprung up; “there’s no evidence Jesus had any powers either, people must have made that up to keep things interesting and as for angels, well, men are living longer nowadays so the angel probably thinks he has time before he need appear to you, right?”

Any way I looked at it there was always a comeback. I should stress that this back and forth was almost subconscious. I was aware of it as I would be a conversation going on at another table in a busy restaurant; sometimes I’d catch a few words but I wouldn’t always be aware that people were talking.

You could blame that particular delusion on my religious upbringing – although it is probably seriously blasphemous to have such a belief. I’ve been hearing a lot recently on how it cannot be psychosis to believe in a creator - and all of the dogma attached - so long as there are many beside you who also believe; safety in numbers.

I grew out of the belief that I was the Christian son of god, back after 2000 years as Chris de Burgh sung. I like to think that I don’t believe in anything supernatural and I feel comfortable in that Universe.

I based my entire belief system on this lecture above by Lawrence Krauss. Although it mostly went over my head I did make out was that there everything can come from nothing. This changed my whole sense of life overnight. I suddenly discovered a world that I could conceptualise, where morality was essentially evolutionary and where I didn’t need a meaning beyond nature.

Judging by what I have seen, heard and read the vast majority of people don’t have the impulse to desire that knowledge. They are quite happy to get on with their lives, dealing with whatever is thrown their way. That is exactly how nature intended it. Evolution by natural selection takes a long time but unfortunately the evolution of society doesn’t. We live in a modern society and yet have primeval brains.

(For example our brains are designed to deal with scarcity. That is why when food is abundant you have the problem of obesity because the instinct says “eat eat eat, who knows where the next meal will be!”)

And yet I find myself aware of desiring that knowledge. My initial reaction was that there had to be a natural explanation for this. A complicated concoction of genes and environment – maybe even the head injury I had experienced when I was younger had caused lesions in my brain. But then a voice somewhere inside said “hey, what if you are special? What if you are destined to make a difference? What if you are the one who will start a new religion of knowledge and lead the world out of the darkness? What if?

It feels like a very naïve idea when I write it down like that. Of course I watch the news and see the situation in the Middle East and North Korea and the overriding worries of Climate Change. I was told you should never base anything on divine revelation and this certainly has that aroma about it. But what if we stopped valuing and wasting money on material things?

Religion seems to glue communities together but they have a dark side as well. But what is there in place of religion? I see young people leading hedonistic lives and it makes me feel sick inside. Is knowledge the way forward? Will it get better if people are made aware of their place in the Universe and realise that there is nothing beyond nature and causality? There need be nothing else because that in itself is so incredibly humbling.

Imagination

Female genital mutilation

Today I read that in experiments, people with Schizophrenia have less imagination than controls. That doesn’t surprise me judging from personal experience. I would not count myself as very in tune with my creativity. Things with me tend to follow a more logical pathway. I met some artists this weekend just gone at an open studios event and it struck me how much more instinctual they were in their approach to life.

My art is worked very hard whereas to them it seems to come naturally. A while ago I realised that my process was mechanical: I record as much as I can in writing and then I review what I have written; noticing patterns, motifs and symbols. I then mould these things into my art work.

I have always been capable at drawing. I have been doing it all my life and I have very few inhibitions when it comes to putting pen to paper. I have experimented and found my own rhythm so it is now almost second nature to me.

I do not envy these instinctual artists because I am who I am; I didn’t choose to be me so why make excuses or pretend to be something I am not; like men feeling embarrassed in the shower at the gym. When I was younger I would look at different people and I’d think “I will be like them”, as though it is possible to fundamentally change who you are.

There may be some leeway I guess; people do change over time as new connections are formed in the brain. Or there are drastic cases of brain damage when an individual can become a completely different person.

I am a particular collection of thoughts. I feel as though I am a being amid a cloud of thoughts; picking them out consciously but I think that is an illusion. There is no ‘me’, there is only the cloud of thoughts that believes it self to be a person.

What Came Over Me?

 Today I decided to go to my first Hearing Voices Network meeting, but surprise surprise it was by no means straight forward. I managed to go into the Salvation Army church (where it is held on alternate Tuesdays) after first taking some time to compose myself. I ordered a coffee and sat in the nearly empty café while I drank. I had the urge to write something down which led me to describe how I was feeling.

I didn’t feel myself and at first I grappled with trying to describe what had come over me. I felt like I was being held back as though chains were restricting my body. But then I realised that I wasn’t being confined by some external force at all; I had just shut down. Shutting down is a well-practiced technique that I learned a long time ago in order to block out the noise in my head.

I remember when I was younger I was able to discern the voices as they were fewer in number. But over time they amassed until no single words were perceivable above the overwhelming din. And so I quickly learnt to shut down - or perhaps I didn’t learn and it was purely instinctive. Unfortunately in order to target the voices specifically I had to shut down everything else as well.

It wasn’t too long ago that any meetings with councillors or social workers or psychologists consisted mostly of dead silence whilst I scraped together some semblance of a response to the questions they had posed. The weird thing was that I felt removed as though the lake had frozen over and I wasn’t able to break through the surface. I tried as much as I could but it was just too beyond my power.

Nowadays I find I have very little problem blabbing away to the professionals. Have I acclimatised to that particular kind of situation? Or is that a sign or how far along I am in my recovery? I do an awful lot of writing. I like to think that it is the only way I can process things - well, if not the only way it is definitely the most effective. But now I come to think of it, who says you should be able to process things naturally anyway?

I am rarely bothered by the noise these days; it only seems to be when I am tired that it manages to break through my barriers. On those occasions the noise is unbearable; like a thousand nails scraping down a thousand black boards. It is at these times that words and sentences force their way through; they usually try and convince me to kill myself so that I am no longer a burden on the lives of my loved ones.

At times like this I’ve found that all I can do is ride it out; maybe do some mindfulness meditation if it isn’t too bad that I can imagine my way to that option. I know that it is very difficult for the people I love to see me in such a state so I find it is best to prepare for it by telling them that although I may not seem it I am ok; I just need a big hug when the time comes.

There is nothing wrong with you – get over it!

Things began to go pear shaped around the age of fifteen. That was when I started to struggle going to school. I had no idea what was preventing me from doing so at the time so I found myself having to make up fake excuses not to go in. I remember being perplexed because I assumed that my school mates were all having the same difficulties as me but were coping with them just fine. I must be weak.

I am very pleased now to have the diagnosis of Schizophrenia. However I still live in fear that someone is going to come up with a test that determines whether or not you are ill and prove once and for all that there is nothing at all wrong with me and that I AM just weak.

But then I remind myself that I do hear intrusive voices and see intrusive images and I speak in a fractured way and often completely lose the train of what I’m going on about. I have also experienced hallucinations and deluded thinking in the past so I think that there is definitely something going on.

It would be nice not to have Schizophrenia; to be able to work and not get exhausted all the time by being ‘on the go’. However I do perversely find myself becoming very defensive when I imagine being told that there is nothing wrong with me. Surely I’d welcome that evidence. Why on earth do I hold on to my diagnosis so tightly?

What would happen if it was proven once and for all that I was as able as any other person to hold down a job? In the past it has been panic attacks that have prevented me from being able to do so. Now that my antipsychotic dose has been lowered a bit I have found that the anxiety too has lessened.

I used to believe that everyone was against me and that they were all seeing into my head. Classic paranoia I guess. One day a while after starting the medication I realised that I no longer entertained that psychotic idea. Now I was faced with the challenge of living in a world where everyone ISN’T conspiring against me. It probably sounds like this new world should be a lot easier to exist in. It is certainly a lot more comfortable, but it is taking a bit of getting used to.

Apparently only around 12% of Schizophrenics in the UK are in employment. Of course this isn’t surprising as Schizophrenia is associated with poor executive functioning. When I first started dating my now fiancée I told her that I was a lot better than I had been. At that time I assumed that I would continue to improve as time went by. I thought it was a matter of taking small steps such as beginning by doing voluntary work for a couple of hours a week and then gradually increasing it, eventually moving on to paid employment. But as Jack Nicolson puts it, “Is this as good as it gets?” - have I reached the pinnacle? I’d like to think that I can get even better than this.

So far things aren’t looking promising. But maybe I’m just going to have to accept that I will need to tread a different path.

I learned recently that emotional numbness can be a symptom of Schizophrenia. Does this mean that I am damaged goods? Am I not able to love my fiancée as much as another could? Or is it all relative? The first thing I noticed when I had my dose lowered was the heightened emotional range. They say you have to find a happy medium with the medication but maybe that means finding a mid-ground between the emotional numbness of the Schizophrenia and the emotional numbness of the medication.

It’s difficult as me to certify that there is something wrong with me. I have not experienced what it feels like to be someone who doesn’t have Schizophrenia. I am told that this thought is deluded and this is paranoid; that the thoughts are all mine and I don’t have to agree with them. But how can I know that they are deluded or paranoid? The fact is that they occur inside me and are so are very tangible.

Again, what if it was proven that I didn’t have Schizophrenia? What would this mean when it comes to these disturbing thoughts? The fact is that it hasn’t been proven that I have Schizophrenia. I have simply taken the leap of faith of trusting in the doctor’s diagnosis. You have to believe in something after all, don’t you? You can’t just sit on the fence.

The malignant melanoma of our world

It’s very morbid but they say death is a natural part of life. I don’t see anything wrong with contemplating one’s own mortality. I learnt recently that getting sunburnt even once before your mid-teens can double your chances of developing skin cancer. Most of our holidays to Spain during my childhood generally followed the same pattern; we’d get horribly sunburnt on the first day and then spend the remainder of the holiday inside in a rather large amount of pain so god only knows what my chances are of developing skin cancer!

Of course you could die at any time but you don’t think that way do you? Even when confronted by Damien Hirst’s shark preserved in formaldehyde all I saw was a freak show. I then learnt its actual title was ‘The Physical Impossibility of Death in the Mind of Someone Living’, not a bad title.

One of my chief thoughts when I’m writing things down (which I do often and it seems to keep me sane) is, following my death, what would my fiancée think when she reads the many journals and iPhone notes I am continuingly compiling? I’d like to add that I don’t foresee my death any time soon.

When I was younger and I was making drawings I used to be surrounded by a cloud of voices. They would often praise me, which was nice but as my disability developed they became more hostile and distressing until I finally shut down my thinking all together in order to avoid them.

Now, though, I am beginning to access my thinking more and more. Could it be the medication I am taking that enables me to do so? I don’t know.

But back to the topic; say I do develop malignant melanoma and it’s so aggressive that there is nothing that I can do and I am dead within weeks. What would be left? I don’t believe in an afterlife in any shape or form; I’m not sure I even believe in me; instead I see myself as a collection of thoughts which themselves are merely electricity passing through an organic machine.

I heard the word ‘Legacy’ yesterday whilst watching a film called Sinister and it certainly struck a chord. It reminded me of how Henri Matisse professed his love of art over that of his wife. I am an artist and have often mused upon this topic.

What it comes down to is that I am an animal (not in the sexually provocative sense of course). I am a part of nature not separate from it. What matters fundamentally is the reproduction of my genes. This doesn’t mean I can’t love my fiancée but what it does mean is that love is an evolutionary function that has come about in order to produce this effect.

I look into her eyes and it makes me feel all warm and fluffy inside. Why is this? Is “because you’re in love” enough of an explanation? I feel that way so why question it? Why do you need a deeper meaning?

One day we hope to have children of our own. That, Sinister vocalised for me, is my legacy. My fiancée tells me to focus on my own life and not worry about the lives of others so much. I can understand how that is a very natural way to be. We evolved to live in small groups and now we live in a world populated by over 6 billion people. I am told that this change happened so fast that our primeval brains weren’t able to keep up.

But that is the reality we live in. I have this idea that the world is broken – or rather it is like a lie that has grown out of control by continual propagation over the ages. Am I right? I sit here in my living room listening to Radio 3 and looking out of the double glazed windows at a manicured lawn and what I see is suffering.

Do I want my legacy to be selfishness at standing by while people suffer? “You can’t change it so don’t bother”, “Why not go and work in Africa building wells then?” I am asked. Maybe I am being selfish by not taking action personally. I tell myself “you are doing what you can, don’t kick yourself, you have schizophrenia”.

Wouldn’t it be perverse if it was my schizophrenia that has given me the ability to take the necessary steps back from the big picture and question why there is so much suffering?

How would I feel if I had to forego certain luxuries in my life so that people around the globe could have more of them?

I meet artists who are so consumed with expression and capturing beauty that they don’t seem to notice the world around them. As I say I think that this is the natural way to be (or perhaps I am being presumptuous and they are actually doing everything in their power to help put an end to suffering).

‘During the war, it was suggested to (Winston Churchill) that funding (for the arts) should be cut in order to pay for munitions. “Then what are we fighting for?” he replied’ – exert from a newspaper article (I can’t remember which).

You call this civilised? What kind of civilisation allows such suffering?

I know that I am being naïve. People can’t just click their fingers and change the world. I do wonder if religion has a big hand in the problem though. I have a feeling that if the religious amongst us (and bearing in mind that celebrity and art and money amongst other things can be religions) were to realise that they are animals - genetically designed and environmentally moulded animals - then the world would be a better place.

This isn’t an excuse for them to sub cede to their natural instincts of greed and violence. It would reframe the question of what it means to be human being in a lot of people’s minds though. Morality is inbuilt through various mechanisms into our biology.

Maybe punishing someone because of their actions isn’t justified as nobody has any choice in the past that has shaped the decisions that they make and instead people should be punished when they go against their natural moral mechanisms.

The world looks pretty fucked up from where I’m standing. But maybe people just need the opportunity to understand.