thus we never see the true state of our condition till it is illustrated to us by its contraries, nor know how to value what we enjoy, but by the want of it.
robinson crusoe, daniel defoe
this watery drowning place is one of those chronic illness states which seems like it must have been intentionally designed to undermine and gradually crush the human spirit. that is true of all the symptoms which drive us sick disabled people further than ever from the rest of the world and the rest of you human creatures. i have a number of urgent communications i need to get over to the not-ill population across the water on the other island. these messages in bottles are crucial – we who are ill need you who are well to understand a number of fundamental features of our experience. if we cannot get these points across, we risk our islands drifting too far apart.
the most important thing we need you to know is that, contrary to popular opinion, we did not come here on purpose. we did not come here on purpose. whatever the reason we are over here and you are over there has nothing to do with personality traits; chronically ill people don’t have more or less strength of character or force of will.
perhaps the most straightforward way to explain it is this. imagine you are you. you, with all your character traits and strengths and weaknesses and fears and hopes. you who live in the house you live in with the people you live with and do the job you do. and one day you get a bad virus, it might even be flu. (i meant to say, one day you get a bad virus again. like everyone, you’ve had them before). so you take a few days off work and drink lots of fluids and don’t bother your gp because the best thing to do for a bad cold or even flu is to keep warm, drink lots of fluids, and not pass it around. sit it out.
the sitting it out takes longer than you expected or are accustomed to. it turns out you do need to bother your gp for a sick note after all. and two weeks on you still feel terrible. weak, and so tired that you have to support your head with your hands when you sit up at the table. the truth you keep to yourself is that you are exhausted deep in your bones and muscles in a way you’ve never before experienced. but two of your colleagues who had the same nasty virus are already back at work, your initial symptoms are gone, and if you don’t go back to work it will look bad. and you feel guilty, guilty and ashamed. which is why you haven’t said out loud to anyone else that you are iller than you were a fortnight ago. we push through. that’s what we do, isn’t it? everyone says so. they say take some multivitamins, maybe some echinacea, drink plenty of fluids, and keep on going. don’t give in, never give in. they say giving in is weak and pathetic.
so you return to work. but then you notice that in addition to that strange aching exhaustion deep inside your muscles and bones, your brain also doesn’t seem to be working properly. you are conscientious and have never messed up at work before. but, horror, you realise that the project your boss trusted you with – and let’s face it, it was a fun project, organising a group outing for some of your favourite clients – you totally forgot about it. you will have to arrange a pared down version of the outing extra fast and hope no one notices you only just remembered about it at the last minute.
then you cycle home as usual. but it’s weird, your bike is kind of swerving about, and your awareness feels much higher up and further away from the road than you’re used to, as if you are floating, or dreaming, but not in a pleasant way. it crosses your mind that you might not be safe to be cycling in this state. but whatever this state is seems so unfamiliar and confusing that you can’t be sure. somehow you make it back in one piece and once home sit at the table, holding your head in your hands. you had thought you were going to make a cup of tea, but that seemed to skip your mind. and an hour later you are still sat at the table. but now your head is flat on the table – you don’t recall when that happened – and you are trying to remember something, anything, about your day at work. you know you got there and back, despite the fact that both journeys have kind of slipped through your fingers, or your mind, or something. you have a hazy sense of a recollection of that odd part of the ride when you were looking down on yourself from far above, although now you think about it you have no idea which part of town you were in when that happened.
some time later one of the people you live with comes into the kitchen and you remark that you’ve never felt so profoundly horribly exhausted in your life and they laugh and say they know what you mean.
and you go back to work again the next morning, never imagining this will be the last day you ever do that. the last day you will ever do anything so beautifully, wonderfully ordinary. you are you, with the life you’ve always lived, and the job you love. the job which fills your heart on a regular basis. but some way through that morning which will turn out to be your last ever at work you find you
this won’t do. this will not do. it cannot be. you are at work and have a job to do. this is unthinkable. impossible. all the same,
and now, one year, two years, ten, twenty-seven years later, you don’t recall how that day you somehow managed to tell your boss that you needed to go home again, hadn’t quite shaken the flu off yet, couldn’t exactly
and you don’t know whether that fun outing ever happened.
and you know when they said, life is like being a pubic hair on a toilet seat – sooner or later you get pissed off?
and you laughed.
and when they said shit happens, you thought yeah but it happens to people who are a little bit shit or crap or rubbish…
but you sort of laughed.
and now you might just be starting to realise – oh wow, that didn’t happen to my sister or my friend because she is useless. it happened to her by random bad luck. which means, oh no, it could happen to any of us. and if it could happen to my brother or sister, it could happen to me – or, dread of dread, my child.
do you see what i mean?
i see you. i see you trying to pretend you can’t see us, the burning ones. the ones in flames.
so next time you don’t look at me, or someone in a similar boat to me, remember that i could be you. and once you recognise the reality that anyone can get sick, that shit can happen to anyone anywhen, it makes a lot more sense that you feel hostile towards me; you turn away rather than look me in the eye because in a parallel universe you are me, and i am you, and you are the one in the wheelchair. whoops.
do you see what i mean?