The sickbed diaries VII

Negotiating the world.

A friend just pointed out how what I’m going through is a negotiation, or re-negotiation, with the world … and how right she was.

I published a collection of essays this year entitled Negotiating the Jacobean Printed Book, something of a mouthful of a title, but utterly appropriate. As one of the contributors, the ever-astonishing Randall McCloud, pointed out recently:

Hi, Pete,

I just learned the etymology of “negotiate”. It consists of a negative particle (“neg-”) plus “otium”, the word for “leisure”.

When you were negotiating the book, you were not at leisure. At last, I dig the title.

Hot damn! I wish I’d done it on purpose. He was right, however (he generally is – apart from his glaswegian accent: far too comprehensible), negotiating is anything but leisure. I feel like I am lounging around, doing nothing, relaxing … like I am at leisure. But every day, every hour brings up new problems, new things to work my way around, to decide whether to fight my way through them or circumvent them. Socks. Sausages. Sodding scrubbing. Yes, it’s mainly things beginning with the letter ‘S’. I seem to have Sesame Street sickness. Without the cookies.

I’ve been negotiating for a while, now … since I was diagnosed with PD. PD does the same, it forces you to reconsider continually, stops you from settling into a routine, as what is comfortable and possible shifts continually. PD turns your body and its environment into a Godwin’s Sands: never the same way twice (though you can play cricket at low tide). The negotiation is multifold – a UN-style affair with the big guns of body, mind, disease and drugs poked and prodded, vetoed and filibustered by the odd finger, the throat, someone’s reactions, a news item, an accident. And the council is always sitting.

Now there is a new spectre at the feast. My lack of left arm in any capacity but ballast. It redraws boundaries and rewrites treaties. It has potential, but potential for decline, rather than progress. While it is, I’m sure, getting gradually better – if only because that’s what the body wants to do, get better, just like a plant wants to grow – most of what I can do is to harm it, by knocking it, jolting it (the fear of the sneeze is ever present), or the automatic reach-out when something falls (which happens a lot. The falling, that is).

Naturally, as it gets better, it becomes less and less sore. Less and less noticeable. So the potential for catastrophic failure becomes greater. This we do not like.

This first week has been scary, but eye-opening. I fully expect great frustration to set in over the next week. Which will make it a great time to write, and I’m building up a head of steam.