Entry 21: Wandering through Night time...

The other night I could not sleep, which I absolutely hate – I can't move, so I end up just lying there staring at the ceiling trying really hard not to think about things that will end up with me crying. When you're lying on your back and tears are flooding out, they trickle down into your ears and of course I can't move my hands to be able to dry them out. I think, therefore, I've become a master of controlling what I think of. Letting yourself dwell on the negative stuff means you will only get more negativity surrounding your body, heart and soul. And then this will lead to the inevitable Tears in the Ears Tickler. Or even worse – the Super Snot Syndrome… I've mentioned in another blog about the perils of needing to blow one's nose and having to rely on another person to hold the tissue. When it's 2 AM it is not a good time to be dealing with this.

So, instead I ended up thinking about what we're made of. Not body – but the soul, the person, be it the spirit or just chemical synapses in the brain or what have you. Whatever you believe makes up The Person.
This train of thought came about from reading the responses of a number of people, also disabled, who have been told that they are "so inspirational". It was a mixed bag from being completely cheesed off and feeling completely condescended upon, to those who find it reassuring that the Able Bodied out there truly are amazed at the courage and strength it takes just to get up every day and live in this body that we are left with. 

Just what is it that enables those who feel they've had everything taken from them get up each day and carry on?

I suppose it depends on what you're made of. Some days I feel that my Person is made of steel – I am strong, I'll bash down those who stand in my way, I will fight and I will not give in until the battle is won. And then there are days I am made out of Wensleydale cheese, the kind that comes with bits of fruit in it. I will crumble at the slightest pressure, I can be squished and melted down how you want me, but I'll let you and smile in the process (hence the fruity bits).

There are days when I know I am brittle; I will fall into a million pieces. I cannot think, I cannot make a decision, I cannot form a sentence even. Some days I can be like glass shattered, and yes, if you try to help pick me up again I will cut you.

Escapism is one of the major tricks of the trade. Or at least, for me it is. But I will add as a precursor to what I'm about to say that I have used escapism ever since I was a child, disappearing into books and stories and imaginative play, so using escapism to cope with day-to-day life is something I would have done anyway regardless of my injuries. Escapism can take many forms of course. For some it is in the bottom of a bottle of booze, for others it is reading a book, or watching endless episodes of a favourite program. It can be playing a computer game, or even burying one's head in work. Lying there in the middle of the night, in the dark, unable to move, there is no escaping your thoughts. Unless of course you have become a master of them, something I have managed to do over many a year. Being able to take a complete time-out somehow restores the "I will cope today" batteries.

There is a film or TV programme or book out there somewhere (and it will be 50 house points to Gryffindor to whoever can tell me where I got this quote from), where somebody is unable to begin to think how they're going to live the rest of their life, and some wise person tells them that they "Start just by breathing in and out."
I think this is very good advice. It is good advice for anyone who feels they have reached the end of the road and can no longer continue with facing daily life however they are, whatever their situation. I know that I have held onto this very thought. Of course it's a lot more tricky when my asthma flares up, and I am in hospital with a chest full of phlegm, but that's when all my friends have kept me strong – by being strong for me.
Remembering that "Death is so final, whereas life is full of possibilities," (yes, I do believe I'm quoting Tyrion Lannister again from Game of Thrones…). It might be hard to see the possibilities – as one person said "What is there to actually do? Being stuck in a wheelchair can sometimes feel as though you're sat on the couch watching all this amazing stuff on TV." [Paraphrased] The point being that it's all well and good sitting on the sofa watching motocross, or 'Kirsty's home-made Christmas', but you're not actually racing and you're not actually making home-made crafts with your bare hands – you're just sat there watching someone else do it. Well in my experience, where there is a will there is a way. The human spirit is not so easily defeated unless you let it be. if racing is your thing, you can go racing. The trick is working out how. Now, I will never again hold a needle and thread (not that I ever did before!) But what I do know is that if I've got an idea of how I would like something to be e.g. a cushion or the layout of a room, then I can let my inner Tigress out, and become quite The Boss. There's no point holding back any more – if you want something done and you can't do it yourself, then describe and ask someone else politely, and slowly become louder and more aggressive if you're not being heard.

so what is it that I am rambling on about? The human spirit – it will only be defeated if you let it. There are many, many things that can wear it down but it is up to you to find your own personal charger for your "I will cope today" batteries. And if you feed it, nurture that spirit, treat it gently and encourage it – you will be surprised at what you can accomplish. Even when you can't move a muscle.