Saturday, 6 September 2014

Keep on turning out and burning out…

And when you’re looking for your freedom
(Nobody seems to care)
And you can’t find the door
(Can’t find it anywhere)
When there’s nothing to believe in
Still you’re coming back, you’re running back
You’re coming back for more

So put me on a highway
And show me a sign
And take it to the limit one more time
– The Eagles: Take it to the limit

I am often told how well I look; or how relaxed I seem… “considering…” – and I take this, as intended, as a grateful compliment: as a willing collusion in the act… – especially considering that most mornings I struggle to wake up; fall out of bed; drag a comb across my head; find my way downstairs; or even drink a cup of consciously necessary espresso (mixed with my day’s first list of necessary potions); before collecting what I laughingly refer to as my brain from the floor, where I left it a few hours earlier, collecting dust; and looking in a mirror to discover that I am Snow White’s diametral antithesis.

This is not a plea for sympathy; nor for people to look further into my baggy, bloodshot eyes to see the continual tribulation that lies behind them; nor for impossible empathy: just to understand that even if my habitual “not bad” or “okay” in response to your habitual “how are you” appears convincing, it is only a performance – part of a repertoire we all have: presenting different faces, facets of ourselves – some true; some edited; some even false – to lubricate the cogs of social interaction. Once I have forced my way through the extended equivalent of the actor’s ‘half’, if I had to admit to myself just how rough I felt, how tough the ‘real’ me found things, then I would not appear on the boards of the outside world at all. It’s all pretence – and I believe that there are few (if any) people on this planet who could survive the death-by-a-thousand-cuts of being truly their raw selves in front of everyone.

For me, though – as I have only this singular perspective; and cannot place myself in others’ well-worn shoes – there are expectations driven by my fake normalcy that I cannot fulfil. And it is this acknowledgment – tacitly will do fine, thank you… – that I wish for.


We all have our limits – of endurance; of tolerance; of independence… – but ascertaining them, and then breaking through them, can be a life’s work. Some people make this – seemingly – into a career: athletes, explorers, even some writers – people who are described frequently as ‘driven’ (and often ‘to succeed’ – but at what – being ‘the best’; or just continually breaking their own personal bests? Perhaps there is little difference…).

For many with disabilities – mental, as well as physical – this has to become their way of life, of living, though. Their minds and/or bodies have given them no option, if they are to survive (never mind bringing ‘meaning’ to their existence).

When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequent question was: What is a hero? My answer was that a hero is someone who commits a courageous action without considering the consequences. Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. They are the real heroes, and so are the families and friends who have stood by them.
– Christopher Reeve: Still Me

This is why I so hate the ‘supercrip’ phenomenon – never mind the feasible technological creation of a race of Übermenschen (instead of using such inventions for equality; or to help improve a body, a life, with a disability) – which, to those who are disabled (and, yes, I include myself) can imply failure, if you don’t also ascend Everest in a wheelchair: a standard that you have to overcome, it feels, if you are to gain rightful access to the Government’s increasingly unattainable and impoverished disability ‘benefits’. But this is taking expugning limits to a ridonkulous – and externally imposed – level.


This is where, of course, in the middle eight, I usually riff on a parallel – as Tysoe’s unofficial genius loci – with the village’s struggle against the threatening world of rapacious development. And today is, of course, no different.

Seeking out a reference for the Sam Pig quote, above, I stumbled on something that appeared completely unrelated. (Proof, of course, that – as I was trying to stress – appearances are simply that: fascias that can be completely deceptive; and why dust-jacket design is such a difficult art.)

As I said to my friend Duke Senior:

To me, [this] sounds like a big capitalist whinge; but it (sort of) encapsulates, I think, the attitude of those we’re up against – and is, therefore, a mindset I struggle to either occupy (empathize) or sympathize with…. Of course, such people would never even deign to try and see our point of view…!

All industries have their associated costs – and limits – some caused (even) by legislation (even if it is incremental in nature). But instead of trying to work within these (or even with those who oppose them), and understand why they are there – or even why people may believe they are “rapacious” (a criticism which may seem rich (ahem) coming from another bastion of the right-wing establishment) – money is spent on lobbying (which sometimes, to my socialist mind, appears to be a disguising synonym of ‘bribing’ or ‘blackmailing’); or buying their way, not to surmount any such obstacles in their path, but to eradicate them. Perhaps an effigy of Eric Pickles should be their mascot?


Surely, though, you ask, shouldn’t I congratulate “such people” on trying to break through the limitations that (they perceive) hold them back? Isn’t this what this post is about?

Aha! I reply (glibly). But there is a huge difference between one’s own body, and the body corporate. I could even digress onto the social aspects of disability; and why trying to derive the cost-benefit of a stair-replacing ramp is a self-defeating exercise. Trying to gain financially, at a cost to others – implying greed – has no parallels with overcoming what used to be (appositely) called a ‘handicap’: even if what you are trying to overcome seems to you to have been deliberately placed in your path (and maybe even out of spite). Most disabled people simply struggle to survive financially, in such a world – without making any gains. Their limits aren’t there for any justifiable reason.


The problem with always pushing, trying to extend your limits, reach beyond your bounds, of course, is that you permanently risk “burning out”: overdoing it one day, at the risk of not being able to do anything the next (or for several days following, in fact). The supposed ‘cure’ for such incorrigible behaviour is ‘pacing’: a way of moving along a median of the energy available to you; keeping everything on an even keel; defined by the National Institute for Health and Care Excellence (NICE) as “energy management, with the aim of maximising cognitive and physical activity, while avoiding setbacks/relapses due to overexertion”.

But, if you have the energy/ability to do the things you desire one day, you want it every day. And, to be honest, the word “pacing” brings back memories of tigers in zoos striding eternally backwards and forwards: wearing a path just behind the fence, bored, captive, desolate. All I wanted to do as a child was let them out. As an adult, all I want to do is break free (God knows I want to break free): and feel as normal, as healthy, as whole, as energetic, as I appear.

You know I’ve always been a dreamer
(Spent my life running ’round)
And it’s so hard to change
(Can’t seem to settle down)
But the dreams I’ve seen lately
Keep on turning out and burning out
And turning out the same

So put me on a highway
And show me a sign
And take it to the limit one more time

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