Complications and the Spirit of Cripmas

So, am back from my op, and guess what? I had complications. Like bone spurs, which have now been removed. Another reason I haven't been able to do any kneeling poses in yoga. Or use my knee joint. Much. I thought was having keyhole surgery, and instead I have incisions and keyhole scars galore. Get a pen and I'm a wheeling noughts and crosses board.

On a slightly surreal note, pantomime season has arrived early in Fangworld. I saw my horrible ex-rhematologist getting told off by her husband in John Lewis. ("For goodness sake! I've told you before! Can't you make up your mind?!" "Yes I can!" "NO, you can't!!!" ).

It's official folks - I have been visited by the true spirit of Cripmas!

Auto email responses for crips - Part II

Or...

"It's operation time again, hooray! From (date) to (date) I will be selflessly submitting my bod for a little more medical experimentation. This means I won't be replying to your message for a few weeks but don't think it's because I don't care... although to be honest, I won't care until the painkillers have worn off. I'll be sitting in my living room with my feet up, comfort eating and watching The Clangers and The Hair Bear Bunch on DVD. Hope you're having a nice time at work. Will write soon...
XXX"

Auto email responses for crips - Part I

You know how it is when you tell people you're going to have an operation when you're disabled - they think you might be going to snuff it (hopefully not) or get all over-concerned. I'm not fond of people fussing so I want to write an informal auto response for my incoming email messages. I have a 'proper formal' one for some work contacts, but have a lot of friends who are also colleagues, who may appreciate a little crip-related humour. It needs to be something a bit tongue-in-cheek to diffuse any anxious reactions. This is what I've thought of so far...

"I will be on medical leave from (date) to (date). Occasionally I may limp pitifully to the computer in my dressing gown to reply to any undemanding e-mails. If you have sent a demanding e-mail that requires some thought, I may just go back to bed without replying. Please don't be offended if I don't reply, you wouldn't have got much sense out of me anyway. Body and mind will be operating at somewhat near normal capacity from (date) November."

Whaddya think? I expect I'll post up a few more until I have to leave for the hospital. Somehow it's easier seeing them written up somewhere. Argh, etc.

Pinning it down...

I'm in my final stages of preparation to go into hospital this week for an operation. Just mulling over what’s in store for me over the next few weeks based on previous experience. S'not a biggie this time though - just keyhole surgery in my knee joint to (and these are not technical terms as far as I know) wash 'debris' out of the joint, and somehow, with radio waves if I remember correctly, debride (or smooth) the internal surfaces of the joint. Oh, and I'm having a pin removed from my shin too. Well, I say pin...

This I didn't know for the past 8 years or so. I'd had some mega-constructive surgery 9 years ago and part of this surgery involved taking a bone graft from the front of my tibia and pinning it at the top to make a more stable knee joint. According to my hospital bill at the time (courtesy of Mr F's company I was able to go private) the guy also remodelled my femur - although according to the latest surgeon, the femur still looked suspiciously odd. I dunno if maybe it just grew back into it's freaky-shaped self over time, but whatever, the latest set of x-rays showed it distinctly unmodelled - and I know I've rambled a bit here, but I was coming back to it, honest - the other things the x-rays showed was the pin.

Now I'd been told this was a teeny-weeny ickle pin holding an itsy bitsy bit of bone on top of the tibia - but it wasn't. It was actually a dirty great fuckin' nail. Yes, a nail! With a rounded head. If you do any DIY at all, you'll know that round headed items tend not to fit smoothly on to flat surfaces, which explains why I haven't been able to do any kneeling poses in yoga for the past few years.

I'm kinda in that position many crips despair of, when you submit yourself to more surgery and more 'opinion' from someone who doesn't live with your body on a day-to-day basis. But I gotta give this guy some credit, he knows the practical implications of my bone structure and can explain back to me exactly what trouble I have with the way my joints move. So if he can look at an x-ray and explain my experiences from walking to age 37 (one of his little sound bites - 'your tibia and femur are like two ice cubes sitting on top of one another and your patella has drifted miles away' - cute, eh?) then I'm happy to give it a chance. Also, music to my ears, he doesn't want to go in and chop everything up again and be a big experimental hero and 'fix' me once and for all.

(Beware, if any doctor starts saying those kinds of things to you, wheel or run or hop like hell away to somebody else and get a second opinion before submitting to a 'fixer'. He hasn't given me any of that 'cure' bullshit. Just that he'll take look and have a think and nothing else until we've talked about it, because he wants to be 'conservative' about things).

That leaves me free to worry about mundane stuff that is incredibly important for my peace of mind over the next few weeks. Like, do I have any decent big 'hospital supersize' knickers? Should I buy more mature looking pyjamas that don't have pictures of Eyore or Little Miss Naughty on them? Should I shave my legs (less pain but short term result) or epilate them? (more pain but smoother for longer). Don't wanna be stubbly in physiotherapy. Does my swimming costume still fit? How am I gonna spend my time during recovery? I'm sick of playing Tetris on my old Gameboy colour and I finished Pokemon years ago. Reading? Are there any books in the house I haven't read? Is there enough comfort food in the house? How do I get all the dog fur off my dressing gown?

It's all-important stuff. And you may laugh but after a fair few operations, my way of not feeling like total shite is to plan to have something nice (i.e., sans Disney characters) to wear, to not be stuck in bed looking at a pair of hairy legs for weeks, to have something to do to pass the time, and maybe manage to look like I haven't just lost my lunch when people come to see me. And ban all cameras. Seriously.

This last bit is pure vanity, but the requirement for visitors to check their cameras at the bedroom door comes from a family ritual I was regularly subjected to in childhood. Hospital became a regular feature in my life from the age of 12 onwards. Maybe to cheer me up, with the best of intentions, Dad insisted on documenting the whole thing each time. Maybe he was trying to make me feel 'special' in the nicest sense of the word, but the trouble with being in hospital is you're usually looking far from your best. The last thing you want even, if you're a tomboy-ish sort of child, is a picture of yourself looking up in misery from the sick bowl. On one occasion I'm sure a photograph of me on the ward was circulated in the family Christmas letter. Oh yes. My Dad loved photography - and there's boxes full of incriminating scrapbooks of my nerdy crippy childhood to prove it in the loft.

Another fetching shot shows what to expect if you've been in plaster for a long period of time. Not even a supermodel could make this look photogenic - the muscles of your plastered limb waste away, while comically in contrast the other limbs stay the right size. In summer if you've tanned, chances are they'll be a very different colour as well. At the time I was just old enough to need to start shaving my legs. I looked on in disbelief as the plaster cast came off to show a horror of a white, wasted leg looking like it belonged to an underfed werewolf, covered in long dark hairs. 'Blimey, look at that' said Dad, in his element, snapping away - managing to capture both my mother and the doctors smirking in the background at the horrified look on my face...

So. Dignity, dignity, dignity all the way. No photos.

(Except for the part where - with some persuasion from Mr F 'cos I'm not sure what to do with it - I've decided to ask the surgeon to save the pin he's removing from my shin. It's big. It's ugly. And I'm determined to get some good photos of it before leaving it in the past where it belongs!)

Breaking the law, breaking the law

Ages ago I was watching one of those crappy 'Top 100 Worst Videos of All Time' programmes. You know the ones, they're on at the weekend, when you've decided not to go anywhere and are feeling thoroughly shite for whatever reason.

Usually you don't hate yourself enough to sit through that kind of carcrash rehash, but after scoffing cheap takeaway food that has given you uncomfortable wind and not yet having drunk enough alcohol to stupefy you into sleep, you channel hop onto something your sober self would never entertain, like the 'Top 100 Worst Videos of All Time', miserable in your cheap gluttony, and stay there.

The presenter was slagging off this video (Breaking the Law by Judas Priest) where the band break into a bank using the explosive power of, um, their guitars (cynical cough). They make it to the safe, where the lead singer bends some woefully flimsy bars apart only to find - a copy of their video! All that effort to invent a new and innovative use for the electric guitar only to gain a Judas Priest video. Talk about being robbed.

Back in Fangworld, meanwhile, I suppose I need to make some flimsy excuse as to why I've been neglecting my blog lately (ok, all year). I haven't been at home much to watch crap telly because I have power, the power of an electric chair! It's not as powerful as an electric guitar, mind, and I certainly can't rob any banks with it, as the top speed is only 2 mph. In case you're wondering, that's about senior shuffling speed. So I have been working, working away, not cooking cheese straws as my New Year's resolution promised. But the hotels I usually stay in cook such awful breadcrumb coated food that I prefer to buy my dinner at Marks and Spencers instead. They make pretty decent cheese straws, so I've given up on that one. Zooming in and out of M&S food halls all over the south east, in my little powerchair.

The chair is little because its an 'indoor only' chair. Whereupon we come to the snag. There has to be a snag, doesn't there, because being disabled, at the mercy of the support services, them letting me have something I actually NEED, to do with what I ACTUALLY NEED TO DO, would be only COMMON SENSE, and as you've probably gathered if you've read my blog before, my local services don't have any common sense.

To this end, earlier on in the year, I found myself staring at freedom, in the form of the new wheelchair that had just been delivered, and a form. A form I had to sign saying I could only take possession of the new wheelchair, that my consultant had said I needed all the time, if only I promise-promised cross-my-heart-and-hope-to-die that I wouldn't do the following;

Use the wheelchair in my (fully ramped and wheelchair accessible) conservatory

Use the wheelchair in my (fully ramped and wheelchair accessible) back garden

Use the wheelchair to go to my (fully ramped and wheelchair accessible) front garden, not even to go to just the end of my front garden path where the fish and chip van parks on a Friday night. Shit, eh?

And worst of all

Use the wheelchair outside, in my (fully ramped and wheelchair accessible) vehicle, to go ANYWHERE that wasn't my bedroom, bathroom, living room and hallway.

So that's my life enabled then - NOT. Apparently, apparently it's something to do with the fact that although I am educated to degree standard, have no cognitive impairment, sight impairment or any other impairment apart from NOT BEING ABLE TO WALK ANYWHERE, I shouldn't use the VERY THING I NEED TO HELP ME BECAUSE I CAN'T WALK ANYWHERE, in case I cause myself harm. Because, why? Why? Would crawling or falling over be so much better then? Oh no, it is - the technician told me with a perfectly straight face - for my own safety.

Apparently some crip (who luckily for them is dead now because if they weren't I'd be havin' a word...), once drove their NHS funded wheelchair into a pond. And died. Apparently according to the wheelchair service. On that basis, the wheelchair service got sued and blamed for this person's untimely death. (They must have spent less on their legal defence than the price of a pressure relief cushion).

Can you see a flaw in this anywhere? Who'd have thunk the pond diving cripple made a bad judgement of his or her own? Do they ever think that sometimes we think for ourselves? (Ok, so deciding you're going to go swimming in your garden pond wasn't a great decision, but...) Oh no! It was blamed on the wheelchair service, something about their misinforming this person that their new wheelchair could swim, apparently, with the result that they have decided none of the other disabled people in the whole of the country can be trusted to use their wheelchair properly - i.e. at all. So now to cover themselves, apparently they are forced to make sure when people who have been waiting years for a wheelchair finally get one, that they have to basically not use it, in case they die and someone blames the wheelchair service - and here's the clincher - because if someone uses their chair wrongly and dies and the wheelchair service get sued again THE LEGAL BILLS WILL CLOSE THE ENTIRE WHEELCHAIR SERVICE IN THE UK DOWN FOR EVER AND ALL THE CRIPPLES IN THE LAND WILL HAVE TO GIVE BACK THEIR EQUIPMENT AND NEVER HAVE ANY HELP AT ALL FROM THE WHEELCHAIR SERVICE FROM NOW UNTIL THE END OF TIME, ALL BECAUSE OF THE SELFISHNESS AND WILFULLNESS OF ONE STUPID CRIPPLE WHO WOULDN'T FOLLOW THE RULES THAT WERE ONLY THERE FOR THEIR OWN SAFETY.

"Now Ms Fang, you wouldn't want that to happen, would you?"

Can you smell something?

Honestly. I couldn't make this stuff up. If I ever had a disabled child, I would tell them this tale if I wanted to give them nightmares. But this is what the technician told me on that day, a day that should have been full of new horizons. Sign the form and promise. Sign it now, or we'll put it in the van and take it away again and give it to somebody else.

I did seriously think about crying and saying no and stamping my foot, but I didn't, because this year I have also been diagnosed with osteoporosis (Yeah. I told you I was feeling shite). I signed the goddamn form. It felt like a little piece of my soul had been torn off. The technicians got in the van and drove away, leaving me with the phone number of the manufacturer on a badly photocopied instruction booklet. I felt so crap about giving in I stayed at home and did as I was told, being miserable about it and signing the form, watching crap television programs about metalheads robbing banks by the power of their guitars. I read the manual and it told me all the usual stuff – don't run the battery down, don't modify it without help from your wheelchair technician, and above all else, don't try and swim in your new powerchair. Funnily enough the booklet seemed to suggest that as long as you didn't tax the chair's capabilities, it could be used outside. And safely transported in the kind of vehicle I happen to own. A couple of calls to the manufacturer confirmed that although speed wise you could be overtaken in the street by an arthritic granny the battery had a range of 7.5 miles.

That night the fish and chip van arrived at its usual time and I boldly went to the end of my front pathway to get some cod and chips. Damn, it was so nice to be outside! It occurred to me that owing to some ridiculous boundary rule the wheelchair service who looks after me is not in the county I live in, but one next door. And that the people who come out to visit me often say things like 'You live very far away, it's taken me ages to get here' and 'I don't usually come out this way apart from visiting you'. So that night, I ate the chips my new chair had enabled to fetch from a few feet outside my house, and pondered this.

Next time I was offered some work in a town far away from home, I took a deep breath and stashed the powerchair in my van instead of taking the manual wheelchair. Words can hardly describe just how well I felt after completing my work - I still had energy to boldly go! I went to Marks and Spencers and bought some cheese straws and a packet of luxury biscuits. Like the cod and chips, they tasted particularly wonderful. So the next night I did it again. And the night after that. And the next, and the next. Being independent is quite more-ish, isn’t it?

When I got home, the first thing I did was drive the chair into my conservatory. No Pythonesque hand came down from the heavens to smite me. Next day I went into town. This was the day I found out that at top speed I could be overtaken by pensioners (they were too busy deciding what to buy in the M&S food section to try overtaking me there) but to be honest, I didn't care - and I still don't care now. I just boldly go and to hell with the consequences. What is the world coming to when it's taken me 6 years of struggle just to get around easily again? Should I feel guilty that I'm enabled to sneak around doing such subversive activities like going into my conservatory, down the front path to the fish and chip van, shopping and holding down a job? Am I hurting anyone by carefully going where I can? Even if I was to get caught tomorrow and made to hand over the powerchair for my errant behaviour, I can honestly stay that to just do these things for a little while has been worth it. It feels like I've stolen the gold, and I'm telling you, it feels a helluva lot more valuable than a lousy Judas Priest video.

Don't look down?

I went to a posh arts do the other week. I had a badge with my name on it, and underneath my name it said 'Artist'. This is because its what I do for a living. If people worked for an organisation - for a living - they had either their job title and the organisation's name on their badge, or if they didn't have a particular title, just the organisation's name. The director's badges said 'Director'.
Well, you would, wouldn't you?

You knew you were at an important do because the food included things like sun-dried tomatos and a cheese whose name I can't spell. I ate it anyway.

Talking of cheese, there was one encounter during an otherwise pleasant evening that made me feel rather fed up.

During 'networking' time - between arrival and the main event, it's fairly common to approach someone and get chatting. I was chatting to a someone I knew, someone switched on to disability arts, arts and disability and all that jazz, when some guy came up and introduced himself. But only to her. At the earliest opportunity, she introduced him to me. He said;

"Hello."

And looked up.

And picked up where he left off with her.

It doesn't help at these things everybody else is standing up and I'm sitting down. Looking up makes my neck sore. It means eye level is more difficult to establish in close up situations, especially if the standing person trying to network with the standing person you are networking with doesn't seem to ever look down, in your direction.

I wondered if he had a sore neck too.

My friend decided to try drawing me into the conversation again. She told him we'd worked together and that I was an artist.

It got me a look down. He said;

"Are you trained to work as an artist?"

I said

"Yes."

Emphatically.

He looked up again.

And that was pretty much that.

It seems to me disabled people still have a long journey ahead of them in the arts when some people clearly don't think we are capable of working at a professional level. I'd like people to think if they met me at a function where we all have our job titles on our badges, that they might assume that when mine says 'artist', its not a hobby. It's as bad as bloody Access to Work.

I memorised the name on his badge for future reference. Maybe one day I'll get to 'not look down' at him.

(The name would have stuck, too, if I hadn't stayed up so late observing a bet on who was going to leave the bar first to go to bed!!! You know who you are!)

Happy New Year

People are asking me the old chestnut, what are your new year resolutions?

I try not to set the bar too high when it comes to resolutions. Therefore, I only allow one simple resolution and consign everything else as intentions. It's a non-pressure system that works beautifully by not putting pressure on you, the resolver.

Intentions, aspirations, ambitions, whatever you want to call them, have no set timescale - and if they don't happen, one may be bumped up to resolution status if you're bothered enough by not getting round to it this year.

As an indender, I am free to intend in my own time, which may or may not come to pass within 365 days - no deadline by which guilt will be inflicted if the intention has not come to pass, with the additional knowledge that I am capable of dealing with one set resolution, and in that rests hope.

And this year hope will be fostered in the bountiful form of cheese straws. Yep. Cheese straws. My one resolution for this year is to learn how to make cheese straws. Because cheese straws are something to aspire to. They seem relatively simple to do, and well, they're nice, aren't they? Cheese straws may play no profound part in my life or the workings of the universe, but they will surely grease the wheels by making people who are presented with them happy in some small degree. And if that isn't hope, what is?

There's no sugar in 'em either, and this year one of my lesser aspirations is to cut down on sugar. Not completely, obviously, because biscuits generally contain sugar and a world without biscuits is unthinkable, more so than a world without cheese - it's just that biscuits will not be my main focus this year because I intend to shed a teensy bit of weight. Intend, though. D'you see what I'm doing here? No pressure. More haste, less speed, an' all that.

Other intentions are as follows; go out of the house to do something nice at least once a week even if unwell, travel to London and see more exhibitions, get out of the habit of saying "Excellent!" to everything all the time, open and file my bank statements in a timely manner, contact people more often and generally be more sociable, buy more clothes that actually match my disproportionate shoe collection, experiment more with hair dye, nail my Access to Work application and actually start a big art project I have been dreaming of for the past couple of years.

All scary stuff, of course.

Last year my resolution was to moisturise my neck. I got the idea after seeing a program about Margaret Thatcher having a portrait painted. I'm not, nor was ever a Thatcherite, but when Maggie turned round and said "One of my few regrets is not moisturising my neck, look how wrinkly it is in the portrait" I thought, hmm, that'll do, I'll have a crack at that... One year on, thanks to the former Tory prime minister, I'm still moisturising.

So, with a smooth neck - and cheese straws - under my belt, surely nothing will seem impossible in the coming year? Nothing!

Happy New year everybody.