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A defining moment of my childhood, one I can still conjour back the sights, sounds, smells and feelings from was when I was 8 years old. It was the day I discovered I was an athiest. This was a profound realisation for me, and, given the bizzarre reality that is childrens minds, led me to the conclusion that I was to grow up to be a nun.

It started like this. I was spoilering easter on my little brother, informing him with glee that no such entity as the easter bunny actually existed. But santy? he asked. No, no santy either. The tooth fairy. Duh, no tooth fairy. And so it went on. Until he asked a very good question (genius for a four year old, I suppose) WHY do grown-ups tell us all these things that are not true?
So we are good, I said, to make us afraid if we are not good we won't get our presents.
And baby Jesus? He wanted to know. Is baby jesus made up to make us be good as well?
Of course! I replied... and then paused. Wait. There is somethign wrong here. My brain started to churn. Christmas is a few toys stuffed in a  stocking, and clothes and school supplies we need anyway. Easter, a chocolate egg, tooth fairy a 10p under our pillow. But baby jesus? Thats a whole other ball game. Thats something that goes on all the time. Thats a giant building at the end of the street towering over the entire town, thats our parents putting money on the collection plate every sunday that we would only dream of having to spend in the sweet shop. It suddenly didn't make sense. So I took the little ones with me, and we walked up to that monstrous cathederal at the top of our hill, and snuck into the back pew to 'say our prayers'. And, on a non-mass time spring saturday morning I looked around me. A scattering of old ladies praying thier rosary in that otherwise empty cavernous space - none of them with children to be made to behave. And thats when it struck me, baby jesus is grown-ups santa, and we kids just get the fall out.

That was the day I realised, of course baby Jesus is made up - its a very silly story anyway, and couldn't possibly be true, but (and here's the shocker) grown-ups don't know this! And so, following the logic, I guessed that priests and nuns are to ordinary grown ups what grown ups are to kids - the controlers, the ones who tell the stories to make them be good. And if I *knew* the truth, then I too would become a controler. I had enough sense to know that if I went home and stated that I knew baby jesus was a lie I'd have the shit kicked out of me, so I only gave the second half of the revilation. I went up to the church and realised I'm going to grow up and be a nun! It was proably the only time in my entire life I saw aproval in my mothers eyes, mixed with a kind of horror its taken me to adulthood to understand. I continued to insist until adolesence that I was going to be a nun. Quite funny really.

Anyway, there is a point to that story. I realised I was an atheist when I was 8 (or more accuratly, realised that most grown-ups aren't, which was quite shocking to me). This is who I am. I am not a gullible person. Do not tell me a story and expect me to accept it as a tennant of faith, for I will not. I will, however, look at two other acpects, where is the evidence and logic of your story, and why are you telling me, what is your motive. As that funny old methodology lecurer in Trinity used to say 'It could have been otherwise' and in exploring the otherwise, knowledge is found. I suppose in my own way I've been a sociologist from that time.

All that brings me on to my current health crisis. The idiot doctors are suggesting that, because they haven't found clear evidence yet of a cause of my illness, that therefore it does not exist. That it is somehow 'in my mind' instead. They are shoving Freudian psyco-babble down my throat, and I'm playing along and agreeing to go see thier neuro-psyciatrist for now, so I can get access to the physiotherapy I need. Oh, how like a cavernous cathederal it is. Yes, you can send your kids to school, but only if you behave the way we like for our good catholic school (the only one in the town). Yes, you can access supports around your disability, but only if you play the game, and admit that its 'not real' (the only option available to you). And the real definition of madness is to keep on carrying out the same action you always have, magically expecting different results. This is a very mad system.

So, where is the evidence, and where is the logic? The evidence, first of all, clearly points to physical disease. My reflexes are wonky, the doctors can clearly see whats not working right. They just can't explain why because I don't have MS  or brain cancer. Woptdedo. I'm supposed to be delighted by this? I'm slowly dying here while a black beast eats me alive from the inside out. Just because you cannot name it, does not mean it is not there. The base line physical evidence is actually very simple.
Where is the logic? Is it logic to say - we have ruled out physical, therefore we jump to the dichotomy of that and lable it mental? No, that is not logic, for that is based on aintent, totally outdated cartesian philosophy shoved through a filter of freudian psycoanalysis.
Becasue, on the most simple level, it is NOT logical to suggest that the mind and body are a duality. If that were so, getting drunk would not be possible.  But we know that drugs (physical) alter mental states, that the brain is a physical organ, and there is no seperate 'mind' - not in any real logical sense. The body is not a machine seperate from the mind, but equally the mind is not a floating mysterious object seperate from the body. They are one. There is no duality, and that is why an explaination that insists that there IS a duality is doomed to failure. So far, this looks a little like I'm advocating that the mind can have control over the body, and therefore arguing for the doctors diagnosis... but when you look into it a bit further, it gets more complicated than that. Because whats actually true is that, since the mind and body are one, they have profound effects on eachother. Get the flu and you will feel miserable (body affects mind), get stressed and you are more susceptable to heart-attacks (mind affects body). But thats precisely why 'its all in your mind' is not an answer to any illness. IBS is a totally psycosomatic illness, it is nowadays suggested. It still gets medical treatment. Droping dead of a heart attack is the ultimate life-style and stress induced physical event. If heart-attacks were treated by neuro-psycs then they would stand over the rappidly dying almost-corpse and say 'we are not going to do anything about this because its caused by your mental state, and therefore you can just stop it'.

Cartesian philospophy as a route of understanding medicine has been utterly discreditied. That the mind and body are not seperate dualites but in reality one and the same entitiy has long been established, but the idea of a 'conversion disorder' goes further than this, because it also posits not only a mind link, but also an 'unconsious' mind link. I, for one, am fully aware of all my consiousness, and percieve no rationality to the idea that this is 'another' me under the surface that I know nothing about. And this is where we fall far further into tennants of faith. How the hell can anyone prove that someone has an 'unconsious' mind that fakes illness? It is an inherently closed system of belief that is neither provable nor disprovable. It is identical to religion. Argue with a religious believer long enough, and even if they tolerate your logic and evidence for a while, they will resourt to 'you don't have the gift of faith' or 'you just have to accept these things, they are miricals' or my mothers favourite 'it's not supposed to make sense' or some such closed loop defensive thinking after a while. 'Conversion disorders' are an identical closed-loop belief system. You could never, ever prove that someone has one, for the simple reason that you can never, ever prove that someone doesn't have one. Give me a totally healthy person, and I'll find some tiny tick somewhere that I'll then show you la belle indifference towards. You can only accept it on faith. And until the theory can be made either falsifiable or verifiable, then it has no place in a thinking persons repotoire of possible answers. It is no different from religion.

But, as said earlier, the researcher has not finished until they have asked 'why is it this way, and not otherwise?' Where is the gain that the doctors or patients get from diagnosing so called 'conversion disorders'? From what I've seen so far its really very simple. It doesn't help the patient in any way. The 'cure' rate for conversion disorders from the journals I've read so far is considerably lower than even a placebo effect should produce.  You have some chance of Cognitive behaviour therapy helping if A) you have had symptoms of only a short duration, b) had symptoms that started suddenly c) have no neurological signs whatsoever (the US clinic that churned out this batch of journal articles would not accept me as a patient because of my reflexes giving positive nurological signs of illness) and d) are less well educated (easier to brain wash). And thats a tiny proportion of all patients. The vast majority stay sick and get worse. So, if 'therapy' doesn't work, why are all patients sent that way? Because it controls help-seeking behaviour, I'm guessing from what I've observed so far, and frees up neurologists offices of the patients they can't explain, leaving it free for those they can, making them feel less impotent and powerless. I know from my own experience that, following the horrendouse episode of three years ago I've not only not gone to the doctor until now, but activly hidden my neurological problems from doctors when there with unrelated problems so as not to open that can of worms. It took a huge worsening before I was willing to reconsider, and after this, well... I'd want to bloody well stop breathing altogether or something before I'd be willing to subject myslef to such hell in the future. And the medical profession wins. Glorying in thier own potency and power. There sits the 'otherwise'.



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I don't know if I will get better or not. That is indeed the big question. And its the one consuming me right now. I need to battle, scream, yell and fling myslef at this illness until I beat it, but there are two ways it could go. I could spontaniously get better soon, go into remission as it were, or this could be it, this could be my new level, and I have to adapt, learn to cope, figure out how to deal  with this amount of physical strength I have now.
I hope to return to better than I am, but hope is a funny thing. It can only exist in the presence of fear. If I wasn't afraid of the bad outcome, I wouldn't need to hope for the good one, I'd simply know. And the hope-and-fear are atrophying me. I don't see a clear path through the dangerous swamp ahead because I don't know which of the paths I see ahead of me will be the real one.

I've been thinking about it, and one thing I particularly fear is that, if anything, I've been misleading the doctors. I keep talking of 'massive attacks' where my symptoms get suddenly worse, followed by improvments and steadying out. But I bought myslef my first disability aid yesterday (more on that later) and it really set me thinking. I've been so busy telling doctors about the worse times and the better times, but what I'm really telling them about is not the underlying illness but my coping skills and ability to adapt.

When this illness first hit I fell apart, and played up to it, and say 'I can't' a lot. The doctors on exam would ask me to squees thier fingers and I'd go 'uhh' and do something pathetic and not try becasue I was terrified by this sudden loss of mussle strength and needed them to see how bad it was, and they saw my lack of effort and wrote me off as a fraud. but it only took the first 6 weeks or so before I decided, fuck, I'm going to beat this thing, and began to find ways of being strong again. But I was already not seeing the doctors any more.
This time around in the hospital I didn't do that. When they said 'squeese my fingers' I'd enjoy the chance to cause some minor discomfort to the doctors in return for all the discomfort they caused me, and from that they were able to see the illness more accuratly - a mussle weakness that is profound in my upper arms and legs but does not affect my lower arms and legs when I'm lying in a position that my sholders or hips are supported. I've been telling them this ALL ALONG, I can knit but not reach something down from a shelf, ever. But of course nothing I tell them has any validity until they can see it for themselves. And then still not.

And so, the question becomes, did I get over the loss of strength the first time not because I spontaniouly 'got better' but because I learned not to put items I need often on high shelves, and not to reach up, but to stand on a stool to get it down? And so my illness stopped being visible. Because if I'm not trying to do something I can't then there is no visible illness. Normal adjusts to what I can do, and then my life becomes 'normal', I don't have to see myslef as a sick person, and all importantly, others don't have to see me as a sick person.

I think in particular about the first year I lived here in England. That was the key time that I felt 'in remission', that I talked about (wrote here in my journal about) being OK, all the neuro stuff dying down. But as I think about it, I can think about a million adaptions I have made. What was significant in that year was that, on moving country I had no choice but to re-write my life, and did so based on my capabilities, and so created a life without physical strain.  I took a consious decision when I moved over that I may be living in the heart of London, but I would not try to go and see any art gallaries or museums, because thats the kind of walking that triggers the weakness fastest. I met friends in hiking dykes, but laughted when asked to join. I leared to shop on the internet as I can't do supermarkets. I bought all kinds of different gadgets for the kitchen to accomodate the things I cannot do. And slowly, insidiously, almost beyond my notice, the tremor spread from my right to my left, the weakness from my hips to my sholders, and all this migration where the illness colonised new areas has happened NOT when I've been in a 'massive attack' but during the coping times, where I've adapted at the same speed and not let it interfere with daily life, and not gone running to doctors saying 'its getting worse, its getting worse'.

But now the illness has hit a critical mass point. I cnnot walk without walking aids. I cannot do simple things like shower or cook food without massive difficulty, and its been time to take my head out of the sand and yell for help - a help that has not been forthcomming. But even in yelling for help I've been going out of my way to tell the doctors 'because this has happened before, I know its only temporary, simptoms will not go away, but they will lesson off again'. But what if they don't? What if the only change in the past has been me coping, and the only change in the future will be me coping?

And so, yesterday, with fear and horror and disbelief at what I was doing, I ordered a 'perching stool' over the internet - a tall stool with a sloping seat for people who are 'less able to stand' to lean on when doing kitchen work and so still carry out tasks at a sink or counter. And I can't help but wonder - will this be the new remission? Crutches and wheelchairs and perching stools? Because up till now my mantra has been I'm not disabled, just a little differently abled. And what of the future - do I move house, install grab bars by my shower and toilet (ever tried to wipe yourslef when your legs won't lift you the inch you need from the toilet seat? I really need a grab bar for beside the toilet right now) And so, I think of coping strategies, but they all involve major changes I can't aford, like moving house, or items like grab bars that are unambiguously disability aids.  And I'm not a happy camper right now.

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April 2011

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