6th January 04, Graham Ward, Homerton Hospital, Hackney, London E9 6SR


Hello folks, this is Steve, typing with one left finger and double vision, in 16 point Arial (‘cos I can see it).

First, the List of Credits: Big thanks to everyone who’s come to see me, brought stuff, sent letters, cards and wishes. (Pause: I typed that little lot before Christmas and it was all I could manage before my shoulder began to hurt. Now it’s the…er…29th and we’ll see how it goes. Last week I got flu and became the epitome of bloke-with-a-cold; I regressed to a mute, immobile larval stage, shivering under a blanket). So I won’t start listing people ‘cos there are too many of you, but special thanks to Thea for, well, everything and my parents for being more relaxed than before. And Tig and Ali for Stuff; Val and Dave for providing this laptop and John for carrying the bastard, it weighs a ton.

Oh…it was the 30th, missed a day. Last night Tig phoned the desk to see if ten people could come in tonight (New Year’s Eve); apparently it was OK but I had to say no. I need all the sleep I can get and I’d rather those people went and had fun somewhere else. I’m not really capable of enjoying myself in any real way so I may as well do it vicariously. Take pictures.

Right, so, news; as I’ve said to pretty much everyone it’s very hard for me to be objective. Last night, however, I had a chat with my former speech therapist (the German one, Ali) who expressed her delight at my improvement. Fair enough; last time she saw me, a few months ago, I “spoke” by spelling out words with my left big toe and could only move my legs and head. So there you go.
Unfortunately I’ve entered a mindset in which the things I can’t do are more apparent than any new achievements. Here’s a list of stuff I can’t do:
- Walk without supervision and a fuck-off four-legged stick that an old Mafioso might use
- See well (shut up at the back); although my vision is mainly single it bounces around whatever I’m trying to focus on
- Change CDs or put on headphones
- Eat solids; although I can chew my mouth isn’t flexible enough to control the position of anything. Food is puree, a French word which translates as “mush”. Distinguishable by colour, today’s lunch was brown, green and spud. This is related to…
…speak comprehensibly, or indeed at all if I’m even slightly emotional. No phone calls yet
- Shit. Lying in bed and sitting in a wheelchair makes you totally constipated (Phil called it “Bum Disorder”); I’ve lost count of the number of enemas I’ve had. I’m sure you wanted to know that.
- Drink fluids.This is a bastard. Actually I can polish off one of those little airline containers of juice in…ooh, ten minutes (with a straw) and only choke twice
- Keep my nose clean. Or my arse...

Well, that’s enough of that. Britta the speech therapist found me in the corridor with my feet up on a table, watching The Leonard Show. Leonard is an irascible old git; “Come on, nurse, ‘urry up, I’m doin’ it in me trahsis !”. He was more entertaining when Shouting Robert was here:
“Evil. Evil. Evil ! Evil, evil, evil ! Aaaaargh!”
“SHUT UP ! Bloody nutcase.”
... It’s better than telly.

I was going to go into detail about a trip to the toilet, just to make a point, but I won’t. However, I will provide one last REALLY DISGUSTING BIT: Some of you may have seen the tube that disappears into my stomach a couple of inches above my navel. The other week I found I could slide it in and out. Minimal sensation but a truly unpleasant sight. I did it once, felt no desire to do it again and won’t give anyone a demo. So don’t ask.

Now it’s 2004 (if I were given to using cliches I’d write “The future !”). A sizeable chunk of the threatened horde arrived last night. It was good to see you all and I hear you had an agreeable if slightly damp New Year. A few people wished me a Happy New Year this morning; I didn’t tell them to fuck off but I can guarantee it’ll be several months before I’ll be able to call myself happy. Plop ! What’s that sound? It’s me fishing for sympathy. I have a goal; to get rid of my wheelchair before my main physio leaves at the end of January. Hopefully that’ll feature in my next update.

It’s the 4th now, time to wrap this up. The truth is, I can’t-or rather won’t-convey how utterly, unspeakably awful my life is now. I don’t want to be here; I don’t want to be like this. But I am, with no guarantees. I’ll just have to wait and see what happens.