I HAVE NARCOLEPSY* AND I AM ALWAYS TIRED.
Usually when I say this, people often say ‘yeah I get tired too or I need loads of sleep’. No offence but it is really annoying. What I mean is – there is never a time when I don’t want to sleep on some level. That I have NEVER been able to stay awake during a class, talk, lecture, play, film, concert, car journey, soak in the bath or whilst reading a book for longer than about 20 minutes. That is without medication. And when I say exhaustion – I mean being so tired that you can hardly speak or walk or know where you are. Or falling asleep during a conversation or whilst eating. Or waking up lying in a shop window or splayed at the bottom of some stairs without any memory of how you got there.
Since adolescence there have been the constant letters home from school for missing classes or sleeping during exams. The teasing and laughing at my so called philistinism. The discipline of social expectations. The presumption that I am drunk or lazy. The embarrassment and frustration. I tried and tried to explain – ‘yes I sleep enough – in fact I went to sleep – no crashed – at 7pm last night’ or ‘I just cant’ seem to help it’ but was told everyone gets tired and we just must learn to control our bodies. As my mum used to say ‘Just stop it! You are making us look bad’. When sleep paralysis and cateplexy* to started appear, I just kept it to myself along the abject terror and horror of hallucinations and nightmares during the night. I am not sure if this is because I thought that everyone must experience them or that I thought no one would listen but I do remember that I often felt very isolated, scared and alone.
Then thanks to a straight-talking-no-nonsense-maths-teacher – who took me aside and asked if I was a) pregnant b) on drugs and then c) if non of the previous that I go to the doctor – my predicament changed at the age of 17. I was diagnosed with Narcolepsy – which low and behold means that my brain is lacking in hypocretin (also called orexin) a chemical that activates and regulates sleep. The relief of a label – finally a framework in order to understand my experience. I was not lazy, uninterested or crazy. No longer was I a circle being forced in to a square mould…
Actually the reality of a label is that it is as much of a curse as the cure to ignorance. Telling some-one that you are narcoleptic very often doesn’t really help them respond to you as an individual. It isn’t that people don’t know what it is but that they kind of know what it is but aren’t bothered to actually have a proper understanding. I guess everyone on some level just presumes that everyone experiences life as they do. To think otherwise is difficult and thus we desperately keep difference at arms length and laugh. We have all enjoyed the fabulously hilarious BBC narcolepsy documentary painstakingly filming an old granny falling asleep into her spuds or the incredibly productive meeting of sleeping narcoleptics. Please don’t get me wrong, I completely understand that it is absolutely genius to televise a dozy pensioner awaking with cooling boiled vegetables smeared across her wrinkled sleep filled face. I do have a sense of humour you know!
Ultimately however this displacement just avoids the fact the people are actually incredibly uncomfortable about what society calls ‘disability’ and what I call ‘difference’. We are unbelievably frightened of it. When some-one is unable to conform to what is, in fact, quite a narrow mode of experience the first thing that happens is that they are bullied and pressured to conform. They are made to feel a failure just in case this will spur them to get their act together against the odds. When it is clear that they just cannot do what is being asked of them, then they are labelled and categorised away either out of sight or objectified as a spectacle – both infantilised and yet actually – invariably – not properly cared for. I was struck by what a sufferer of dyslexia once told me – that first they were the victim of the presumption that they saw and digested the text in exactly the same way as the teacher and then once it was recognised that this was not the case, the teachers just wrote him off or gave up. He had to bear the stigma of a label without receiving much flexibility. Discarded or put aside like a ‘faulty’ machine.
The irony is that for those of us who feel we can work, ugly discrimination blocks our path. I am disabled. I want to be a teacher. In order to do so I have to prove that I can do the job in the same way as everyone else. However, my brain is physically different which means I cannot do the job accordingly. This is a scientific fact. If I cannot change, it is obvious to me that therefore the job has to change. On the other hand, we have to jump through demeaning hoops to claim benefits. Thus the torturous contradiction of the ‘disabled’ experience is laid before capitalism. It is too difficult and expensive to change work structures to suit it individuals, it is too costly to have people on benefits. As the Tories attack disability benefit further whilst employment rights remain fairly weak, what are people – like me – who just can’t fit the mode meant to do? Well either make enormous sacrifices to try to blag it (as I do) or I guess be forced to be reliant on a partner or family member. Probably in most cases combinations of both.
Yet, it seems completely illogical that we would all operate in the same way. Not just because everyone is physically unique but that we are the sum total of our socialised experiences which are also unique and in turn influence the materiality of our existence. The possibilities are infinite and yet the structures of society thwarts this potential – instead attempting to reduce workers and citizens into a fairly one dimensional template. For all the talk about individualism, capitalism is completely unable to cope with our wondrous and exciting individuality. The truth is NO ONE can really fit into the mould that is created for them but with the right amount of force most people will be more or less pliable. Disability is the label given to people like me – who no matter how much pressure is applied, just cannot be productive in this ridiculously narrow or ‘normal’ mode. We come in all shapes and sizes. Some of us were born this way and some made this way. But we all have something in common – we are the so – called unproductive citizens. We are difference. And, as such, we are terrifying. Of course the binary of abled / disabled or different / normal is actually nonesense. The labels are important as they define a certain social experience but the reality is that we are all so different it actually makes us the same.
Would I want to be cured of my so called ‘disability’? If I could change my brain would I do it? It is the million dollar question. Contrary to what may appear to be my self-indulgent wallowing, I couldn’t really say where the narcolepsy stops and I begin. It is integral to my personality. There is actually quite a lot about narcolepsy I would miss – in particular the blurring between conscious and unconscious states and even cataplexy feels kind of cool sometimes. Maybe I would, maybe I wouldn’t but what I do know is that most of the ‘disabling’ that comes from my condition is not a fault in me but about how society operates. That in a different sort of society, yeah I might collapse and feel tired – but I could just get up again or have a nap when needed and that none of this would prevent me from being the fantastic multi-faceted human being I know, if given a chance, we all could be.
*Narcolepsy is a chronic neurological disorder or defficiency in the orexin/hypocretin system which determines whether an animal should be asleep or awake and active . Narcolepsy affects about 1 in 2,000 people. Main symptoms are: – Cataplexy (loss of muscle control)A sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing or crying. – Hallucinations Vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening. – Sleep paralysis Being unable to move or talk at the beginning or end of sleep. – Microsleep A very brief sleep episode during which you continue to function (talk, put things away, etc.), and then awaken with no memory of the activities. – Nighttime wakefulness. Periods of wakefulness at night, with hot flashes, elevated heart rate, and sometimes intense alertness. – Rapid entry into REM sleep. Narcoleptics have unique sleep cycles. They enter the REM or dream phase of sleep right after falling asleep, whereas most people take about 90 minutes to enter REM.For more information about narcolepsy:
http://www.narcolepsy.org.uk – www.sleepsociety.org.uk – julieflygare.com * Image was created by Celine Romaine Pillay 2013