Invisible Existence

Leo Doran suffers from narcolepsy, a sleep disorder which affects the brain’s ability to regulate the normal sleep-wake cycle. She describes her experiences in the workplace and wider society, her rage and her growing sense of strength as she fights back against injustice.

REMEMBER HOW WHEN YOU WERE A KID THERE WERE GOODIES AND BADDIES, the Tories were scum, each story had a moral and everything ended happily ever after? One day you realised that it is the baddies who are rewarded, some people actually support the Tories, nothing has a moral and things can just be shit.

DoranI know this because at the ripe age of 31 I am now disappointed, cynical and exhausted. It was not always like this – yes, like everyone else I was once bright-eyed, hardworking and ‘aspirational’. However, a strangling sense of loss grips me. Why? Because over the past few years I have learned what it means to be disabled. I never wanted to be different. The distinct recognisable symptoms of narcolepsy started to appear in my early teens and I was diagnosed with the dreaded chronic condition at 17. My family told me not to tell people and so, on the whole, I didn’t. Given how rare narcolepsy is, the only time I ever mentioned it was if my hand was forced, for example telling university authorities because I might otherwise be penalised. As my cataplexy (an episode of muscular weakness triggered by strong emotions such as laughter, anger and surprise) became worse and more frequent, I lived in absolute terror because at any time I could collapse completely to the floor – and how would I be able to hide it (actually this did happen and I managed to persuade people I had just fainted)? I would be criticised, disadvantaged, laughed at, mocked, and dismissed – for things that were not my fault. Disciplined for just being the way I am.

So I forced myself to hide it so well that no one would ever guess. Only people close to me would see the price of this charade. I would keep my positive waking hours for the general public and shut myself away when I was unable to keep up the performance. I made sure no one ever saw me sleeping on the toilet floor (something I still have to do more than once daily), anticipated possible risks of episodes and rehearsed my ‘one liners’ to casually cover up when needed. And I became so good at lying. Disabled people were ‘over there’ – in wheelchairs or with guide dogs. They were people to be treated compassionately and kindly but they were not people like me. I could not accept myself. How are you meant to cope with being told at 17 that your life will always be a struggle? It seemed better not to think about it.

dpacetcThen the best and the worse thing happened to me – I no longer could blag it. I would have probably have done anything to be ‘normal’ and to hide my disability. I just couldn’t. It is not just the unavoidable nature of the decline. It is not just the heartbreak and pain of the actual descent. No, far worse is having to smile, wave and pretend that everything is okay – or that this is just a little blip and I will be back on track soon.

Most people rally to a crisis. Everyone loves drama or adversity that is overcome. But it is the chronic and day-to-day element that is at the crux of disability. There is no glamour and melodrama but daily struggle, pain and discrimination in every aspect of our lives. Activities that others may take for granted, like taking a train, going shopping, having a bath or cooking a meal, become dangerous, risky and, at times, impossible. There is no break from it and it never goes away. Watching people watching me – patiently (and then not so patiently) waiting for me to get better, kindly advising me how to manage things with banal healthy lifestyle tips and assuring me, in a gradually more panicked tone, of the rights afforded to everyone, is just soul destroying. It is fear that I see in the world’s eyes because I will never be cured. I literally embody society’s failings and destructive contradictions – as I am a problem capitalism can never really solve.

When I had to declare my condition to my line manager, she looked uncomfortable and then uncertain, asking “but you can take medication to sort it?” Stupidly I reassured her but of course, this is far from the truth. There is no pill to make me ‘normal’. I am different – my life is different. I never really sleep for longer than about four hours (and even then I rarely get the right ‘type’ of sleep) and therefore I am never awake for more than around four hours.

NarcolepsyA daily prescribed cocktail of meds try to artificially remedy this so I can be forced into the 9-5 regime. A large part of the ‘disabling’ of my condition stems from this – society’s total inability to incorporate difference. The violence of trying to force my body to fit into moulds that will never fit, causes exhaustion, isolation, physical pain, fibromyalgia, lowered immune system, infections. My recent bodily decline has been so quick and brutal it feels as though I am ageing ten years for every twelve months.

Misunderstanding and isolation spark a terrible silent scream that makes me feel like I am shouting from behind a sound proofed window, desperate to be comprehended. Even my GP tells me, without apology, that she “knows nothing about narcolepsy” and I am often trapped in a yoyo between her and my specialist (not least about funding my treatment).

Of course, for me there were no ‘reasonable adjustments’. Just because a vague phrase is written in law doesn’t mean it has anything to do with reality. Now, as I am having to give up my job (even though I have already been struggling on a part time wage) and start applying for benefits, I face not only poverty and hardship but bullying, humiliation and disrespect from the very people who are meant to help. As I watch with envy people I know, getting on with their lives, buying their houses, having children, excelling in their careers – a question throbs, ‘what will happen to me?’

I wish I could end these reflections with an inspiring paragraph of hope – but I can’t. I wish I could evoke clichéd optimism, declaring that my disability doesn’t stop me from doing anything – but this is not true. I will not allow you to stick your head in the sand. Disabled people are being persecuted on a large and horrifying scale. The austerity years require far more than reformist delusions trying to bodge contradictions. You must turn to face the harsh reality of our existence, just as I have been forced to.

I will not suffer silently at the margins of society. I will not try to make myself acceptable to your norms. The more I am ignored, the louder I shall scream. The more I am trampled down, the greater my burning rage against injustice. Recently my skin has felt much more comfortable – softened by a sense of belonging in the tradition of disabled warriors who have to love and accept themselves even when no one else can; learn to reinvent themselves as more and more doors are closing; and dare to fight even when the odds are against them. Because I have narcolepsy and I will never apologise for it again. Because I am disabled and, even as my body fails, I have never felt stronger.
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