Geoff Matthews began reading in the cot. His mother, at her wit’s end with the constant noise and unceasing activity, would plop him down on the soft mattress with an encyclopaedia full of pictures then quietly slip from the room. His father, ever the pragmatist, declared, that they should, “throw the noisy bugger out of the window.” Happily this event never came to pass (or if it did Geoff bounced well). Growing up, he spent Sunday afternoons on the sofa watching westerns and Bond movies with the self-same parent who had once wished to defenestrate him. When not watching the six-gun heroes or spies being out-acted by their own eyebrows he devoured books like a hungry wolf in the dead of winter. Beginning with Patrick Moore and Arthur C. Clarke he soon moved on to Isaac Asimov. However, one wet afternoon in a book shop in his home town, not far from the standing stones of Avebury, he came across a book by David Eddings – and soon Sci-Fi gave way to Fantasy. Many years later, Geoff finally realised a dream and published his own fantasy novel, The Stone Road, in the hopes that other hungry wolves out there would find a hearty meal. You can follow him on twitter or visit his website.
It seems to me that sometimes, not all the time, but sometimes, we, as ‘able-bodied humans’, develop this strange idea that people with ‘invisible illnesses’ or ‘hidden disabilities’ are somehow doing it for the attention.
Now, that sentence is locked and loaded with caveats, and for good reason. I don’t want to make sweeping statements, stereotype, prejudice or pre-judge. I want merely to reflect an observation, a realisation, of how we act either consciously or sub-consciously. I should also give some context to this view, to try, in my imperfect prose, to explain why I think this happens.
So, context first:
My last article, on SF Signal: Special Needs in Strange Worlds, dealt with reading – how children and teenagers were supported, how those who struggled were helped, how children on the ASD spectrum were assisted, and what they, as teenagers, actually read. In my professional life, I have met, and worked with, people who suffer from invisible illnesses / hidden disabilities. Parents and children with ME, children with mental health issues and parents with the same. The list goes on and on, and the frustration of it all? The struggle the health care system experiences in dealing with, treating and supporting these children and parents.
Secondly, I have two heroes in my Forbidden List trilogy. One appears to get everything he desires, but must then worry about defending it. The other, and the one more related to this article, loses everything and must cope with loss, grief and bereavement. It was in the writing of the scenes where that loss comes to the fore, where it has a physical or mental impact on his senses and actions, that some of my experiences and observations helped.
Last piece of context, I promise. In January 2014, whilst teaching a class of 14 & 15 year olds, I had a TIA (Transient Ischaemic Attack – a mini-stroke, if you will). I lost my eyesight for a time, lost the ability to recall simple words (and funnily enough, upon reflection, it was the nouns I couldn’t find, no matter how much I tried. There was just a blank space in my brain where they used to be – a very strange experience). A day later I was fine (still in hospital, but to my mind fine). I was tired though. Very tired. So tired. A tiredness that lasted a long time. I wasn’t allowed to drive. Fine. I could take the bus or walk. I had to work, I wanted to work, and went back part-time, for a while (and I remain grateful that, upon turning up to work full-time, I was told to stop being stupid and go home.). And I did something I have never done in my four decades of life. I would come home from work in the afternoon and sleep. Not just for an hour or two, but by 4pm I would be asleep and go right through to 7am or 8am the next day. It took a long time for my old sleep pattern to return to a semblance of its previous state. It is still not what it was.
When an illness or disability is invisible, when there is no outward, physical sign that something is not right, it can be easy to overlook. As people, we find it easier to imagine that everyone is fine, everyone is average, and that there are no differences. It makes us comfortable. And it is in this comfort, in our concern and care for people, that we can fall into the trap.
We begin to wonder if, just maybe, despite all the work of the health care system, that really the way they keep raising the same issue again and again is just a case of attention seeking. I mean, come on, everyone else just buckles down, bucks up, picks themselves up and gets on with things without all this complaining and neediness. Come on, people, get over it – everyone has trials, tribulations and difficulties. I saw you yesterday, you were fine, you were smiling and working. You don’t need to keep reminding me you’re ill; by looking tired, by not turning up for work, for needing to go home halfway through the day, complaining about your back, head, stomach, joints, shoulders, feet, legs. Get over it and get on life.
Cobblers (as in ‘bollocks’ – another quaint English word)! An ‘ill’ person might need care, but more than likely they’d prefer to live a life without being ‘cared’ for. They might have to rely on people, but they’d rather rely on themselves. They might be dependent, but rather be independent. They might be smiling, but crying inside. They might be crying, but raging behind the walls of their mind. They might appear courageous and brave, but live a life of fear, of being on edge, of constant worry.
And all those things, we don’t see. We see those people try to get on with life, we see them at their best (generally) for when they are not they are at home, out of sight, resting or in hospital. So, when something happens, something occurs, a time when they need us, that we in our care, our frustration, our misunderstanding, our ignorance, might just think it is all for the attention. After all, this isn’t the first time they have asked us, or needed us, to help. We’ve got our own work to do, our own lives to lead, our own little worries.
We might be thinking, ‘if you’re this ill, you would be in hospital, or at home, or anywhere but here.’ There is the chance that we inflate, in our own minds, the ability of modern medicine to cure, treat, or mitigate, the illnesses and disabilities that people suffer from. And in that thought, we could consider the idea that if a doctor can’t cure it then this person should be in a hospital, for a long time, probably until they find a cure.
Then we might, just for that moment, given the fact that they are not in hospital attached to tubes, machines or with the constant attention of a medical professional, have the idea that all the ‘performance’ will be a cry for attention. A way for them to say, ‘look at me, I’m different’, ‘look at me, I am ill’ or the ‘I need someone to care for me, to pity me.’
Cobblers (as in… well, you know). I think it is a trap we can all fall in to. One we should all try and guard against. And we will fail at times. We are just human after all… all of us.