I went for a random browse earlier. Somebody somewhere said a little while ago (was it you?) that the blogosphere is a great place for weeding out writers who would in earlier times send their rantings through to book publishers, but now some of these people have an easier stage, they are writing blogs instead.
Don't expect a Fangworld book anytime soon.
My trawl today spawned a great deal of;
"YeaH buT nO buT me an mi maTeZ r sO cOoL rIghT an eVeRy1 eLse is MinGinG rIght bUt yeah buT No buTT..." liberally peppered with pink bug-eyed kittens, anatomically challenged 'fairies' and stunted little bears holding hearts saying "I need love" (subtext, everyone else has run a mile).... I suppose it's better out than in, but half these people don't appear to put up a navbar, so escaping to the next blog - which often appears to be someone selling bulk cat litter or wonder drugs - is just harder to do. I found out today you can buy moist tissues to wipe long-haired cat's arses just by clicking 'next blog'. Predictable things in surreal order. Or surreal things in predictable order? I'm assuming mostly human beings write blogs.
When I was 14, I had a CB radio (I admit this for your gloating pleasure). My mum's best friend's son sold it to me, and somehow that made it respectable in the eyes of my parents, who would never have allowed me to procure such a thing had it not been for her involvement. The 1980's equivalent of a teenage angst blog was sitting in your bedroom with the mike keyed, broadcasting some mournful song you wanted the fit CB-er you eyeballed, and snogged, and who has never called you back on channey 19, to listen to. (I found all my most car-crash-y relationships over the CB radio.)
The human condition is unravelling out over the internet in all its myriad forms, and somehow I wonder if I should feel pleased to see some of the banel, darker, weirder or just plainer sides of people - quite reassuring for my own varied states of being, but mostly, strangly, kind of boring. Maybe because if you've been there, whatever the blogger is peddling is so familiar you don't need to stick with it - sometimes the strapline or profile gives you all you need to know, and you click next blog, sometimes before the other has quite finished downloading.
And maybe we're so exposed to it all now that these things don't have the voyeuristic qualities they might have once had?
It's an unhappy teenager - who hasn't been there? It's a gadget geek - you've bought them all. It's some 'kooky' bint - kooky is depressingly common. It's some average geezer (and maybe some phonecam pics of the average geezer's bum...) - like the cheeky average geezers who show their bums at the slightest opportunity and you've known all your life in real time. It's a goth doing the goth thing. Uniform black page - and if they're hardcore, so is the navbar. Sub-culture no-limits competition. Mmm, might stop for a minute or two - but only to reassure in myself in my heyday I was goth-er. No limits competition after all.
Next click, it's some disabled person. Do people stop and read cos they're not disabled? Do disabled people stop and read because they are? What's the difference between writing a blog about your life that happens to mention you are disabled, and focussing your blog on the facets of your life that disability touches?
When I set out to write Fangworld I wanted to mention disability, but not in the 'poor me' genre. I don't know if I'm succeeding yet, because I'm too close up to it, and yes, from time to time you do go through stuff that isn't nice - although so does everybody in some way. But there are facets of your life as a disabled person that are outside of the stereotypical way that (you think) people might see you. Sometimes it's funny to be disabled. Sometimes you get into dreadful scrapes, but actually in the grand scheme of things it doesn't matter. Sometimes I wonder if my wheelchair makes my bum look big, and I don't know anybody that would understand that or take me seriously. When I asked the wheelchair technician if the footplates would angle to enable me to wear high heeled shoes, she said "nobody's ever asked me that before..." I like to look for the access in everything, only to ensure it remains insignificant, and then I want to laugh about it, or ridicule the mountain of planning that pre-empts any spontaneous activity. I thought there'd be some point in my experience where I'd be self assured, but there hasn't been thus far. This is my unpredictable - and many other disabled people's unpredictable too, maybe? And so maybe simply another average afer all.
And I don't see the disabled ME in the world (yet) the way I see the teenage me, or the thirty-something me, or the career me, or the me having a relationship with someone else me. Disabled people aren't visible enough everywhere in society. Everywhere. Maybe this is the reason I justify writing this blog to my totally predictable, endlessly average urge to be on here just because I, like everyone else, can write a blog, and this is me.
?
Thursday, March 24, 2005
Tuesday, March 22, 2005
91.2
This is my life expectancy. Allegedly. Do yours here Life Expectancy Calculator
My Grandpa was 96 on Friday, and a grand old Lancashire gentleman he is too. He's bearing up well. I'm the one in the wheelchair, whilst he flits about on a zimmer frame he only started using a few months ago.
I'm in a weird situation at the moment, being told how physically crap things are, yet seeing my career take off and be requested to 'do' things, talks and stuff. I went to a school on Friday to talk to 80 15 year olds (!!!) about being an artist. Of course, I was scared beforehand, but was encouraged to see a few gothic types and a few pink-headed pierced people lurking about. No dress code at this school. Lots of skater types too, but thankfully no goddamn casuals, who were the sorts I used to have wars with back in the day. It was all v-neck jumpers and gold jewellery, wet look perms and shell suits then. Shell suits are really flammable, y'know.
Not many chavs present in the audience. But do chavs go to school? My neighbour's son is a chav, and he was excluded at 14, so maybe that explains their absence - the audience were all 15. Yep, I hate chavs and I'm proud of it. Actually there's not much difference between these two sub-cultures, chavs and casuals, maybe the chavs-of-today are the spawn of the casuals-of-yesterday... hmmm, makes sense, doesn't it? They wear baseball caps today 'cos when they were little, Mum and Dad made them have wet-look perms, and the shame of it means they want to forget forever what the tops of their heads look like. Yes. That must be it.
D'y think I could be more than an artist? Maybe a little sideline in social commentary would boost the income. Before somebody blingin' shot me, that is...
Anyway, an absence of chav-types at the school made me feel more relaxed and it went very well. My theory is alternative types are more accepting of difference - never had any disablist abuse from alternatives, but have copped it from chavs on occasion. The kids even laughed at my jokes. I had been warned not to do any by a teacher friend, for fear of appearing uncool, but with this recent success I wonder if I have an alternative career choice in stand-up comedy too (one of my hobbies, me and Mr F go off to Jongleurs in Camden Lock every now and then), as well as social commentary, maybe sort of with a disablist twist?
I was wondering how to hang all this together, as this post was just a flying visit until later on in the week, but now I realise that as I am destined to live to 91, I could feasibly attempt all three careers - artist, bigoted social commentator and comedienne. I have the time. Ha!
My Grandpa was 96 on Friday, and a grand old Lancashire gentleman he is too. He's bearing up well. I'm the one in the wheelchair, whilst he flits about on a zimmer frame he only started using a few months ago.
I'm in a weird situation at the moment, being told how physically crap things are, yet seeing my career take off and be requested to 'do' things, talks and stuff. I went to a school on Friday to talk to 80 15 year olds (!!!) about being an artist. Of course, I was scared beforehand, but was encouraged to see a few gothic types and a few pink-headed pierced people lurking about. No dress code at this school. Lots of skater types too, but thankfully no goddamn casuals, who were the sorts I used to have wars with back in the day. It was all v-neck jumpers and gold jewellery, wet look perms and shell suits then. Shell suits are really flammable, y'know.
Not many chavs present in the audience. But do chavs go to school? My neighbour's son is a chav, and he was excluded at 14, so maybe that explains their absence - the audience were all 15. Yep, I hate chavs and I'm proud of it. Actually there's not much difference between these two sub-cultures, chavs and casuals, maybe the chavs-of-today are the spawn of the casuals-of-yesterday... hmmm, makes sense, doesn't it? They wear baseball caps today 'cos when they were little, Mum and Dad made them have wet-look perms, and the shame of it means they want to forget forever what the tops of their heads look like. Yes. That must be it.
D'y think I could be more than an artist? Maybe a little sideline in social commentary would boost the income. Before somebody blingin' shot me, that is...
Anyway, an absence of chav-types at the school made me feel more relaxed and it went very well. My theory is alternative types are more accepting of difference - never had any disablist abuse from alternatives, but have copped it from chavs on occasion. The kids even laughed at my jokes. I had been warned not to do any by a teacher friend, for fear of appearing uncool, but with this recent success I wonder if I have an alternative career choice in stand-up comedy too (one of my hobbies, me and Mr F go off to Jongleurs in Camden Lock every now and then), as well as social commentary, maybe sort of with a disablist twist?
I was wondering how to hang all this together, as this post was just a flying visit until later on in the week, but now I realise that as I am destined to live to 91, I could feasibly attempt all three careers - artist, bigoted social commentator and comedienne. I have the time. Ha!
Tuesday, March 08, 2005
Real life disability jackasses?!
Remember I said there needs to be someone doing the disability version of jackass? Check out this site.
Wheelchair Junkie
You need to find the idiot zone - it's part of the larger site. Cool photos. Mark E Smith, the author, is a man after my own heart. You won't find any worthy cr@p on this site either.
And talk about creative equipment manipulating... can't wait to get ma new powerchair!
Wheelchair Junkie
You need to find the idiot zone - it's part of the larger site. Cool photos. Mark E Smith, the author, is a man after my own heart. You won't find any worthy cr@p on this site either.
And talk about creative equipment manipulating... can't wait to get ma new powerchair!
Friday, March 04, 2005
Self he-he-he Heeelp
Well, I am almost a born again self helper! (except for my cynical side, which is the dark side, thus the undead that can never die... ) But other than that, I'm dealing.
Nearly.
Almost.
Hunter shooting himself the other week sent me into a fit of grieving on top of it all, and some of the specualtion among his friends was that pain had been a factor. It didn't help at the time. But anyway. Apparently it was all planned, and I'm in two minds to decide whether that was a tragedy, or just to admire the way he chose to check out. He was an exceptional freak. As I said in another post before the news broke, self-extinction has crossed my mind too. Don't take this too seriously - remember I'm prone to gothic indulgements - thinking about death is often a recreational habit. But to choose to go rather than wait for death to take you unawares does have its appeal. You can say goodbye to stuff. Get your affairs in order (my paperwork is so messed up it looks like I'm here for a good while yet...). And... other things. I dunno now I come to think about it, maybe if I do ever get there I'll do a list for ya.
But don't hold your breath, cos... me and my TeNS machine are new best friends. Earlier on last week we went on a short break together which worked out very well. I spent some time reading the manual in a little premier travel inn in freezing Sussex. I read a manual when I borrowed one, and I just assumed that having read that, there was nothing more to learn in the new one. Not so. Another trawl brought up a gem, like how to break muscle spasms by turning the pulse rate up high enough to give you even stronger muscle spasms...! The theory is you can break your muscles out of a spasm by out-spasm-ing them even more. Classy or what? Revenge on the unruly body. After some experiments I managed to invent a new party piece, which I shall call "spazzzing frog". I can see "spazzzing frog" is going to have many applications in my capacity as a disabled secret agent as well as many entertaining hours at parties. (Note it has 3 ZZZ). Talk about grotesquely fascinating. In addition, the sensations that zap your fingers if you try to pull off one of the electrodes whilst it's still switched on. I've never had such bizarre happenings occur without chemical influence! And, AND it's helping with the pain too. How splendid! Of course, don't try "spazzzing frog" at home unless you are a disability jackass in training, in which case you'll love it.
(To go off the point a little, I really think some crip should do a disability jackass show. We have so many gadgets to attempt hazardous, non- purpose meant stunts on... a huge potential is being wasted. I'd have done it, but now I have my diagnosis - officially fragile - I guess I'd just have to take the role of director and let someone else take the glory. But I'm cool with that).
Anyway, pain, or less pain, as I originally set out to describe. I have a morning routine now. I bought the book by a Professor and expert in my condition, and so will have many new coping insights to share with you all over the next few weeks. Ha. Anyway. Routine. It goes something like this:
Conciousness occurs, remember what planet am on.
Forget about nightmare where I move into neighbours from hell house next door whilst they are on holiday and have to sleep on their dogs bed (yes, really)...
Arrange pillows into small regal pile, sit up, come round a bit more, earphones on, listen to soothing music on ipod. (Yup, I'm a gadget poser, but this is a gadget Very Worth Having if you need to relax)
Take some big painkillers before really awake, set alarm clock for 30 mins and Do Not Move to allow floaty effects to start and preven pain from rearing its ugly head.
Drink lots and lots of water in the meantime - not only does dehydration from painkillers make you feel hungover without any alcohol to start with, but c o n s t i p a t i o n is not your friend.
30 mins later, get up, float/wheel/hobble to bathroom, attend to ablutions. Really wake up when stick electric toothbrush (access aid - saves moving wrist about too much) up my nose. It has happened more than once - apparently poor realisation of exactly where your joints are when you move contributes to toothbrush-up-the-nose syndrome and is Another Thing I can blame on my condition.
Decide whether have energy to have bath... shower... or not...
Go back to bedroom, get new friend TeNS machine out and apply electrodes. Do Spazzing frog. Garrrgh. Properly awake now. Swear a bit when genuinely forget not to remove/replace electrodes when current is running.
Decide what to do with self. Food. I'm on Special K get back into your genes (?! ha.) diet, vain hopes, also I don't have to worry about handling heavy pans or making real food.
- About half morning has gone by as ablutions take ages due to inaccessible bathroom, low energy and and morning stiff joints -
Have little rest.
Float to computer. Check e-mail. Potter.
Do interesting things for rest of day at own pace... stuff. Art stuff. Invoices! Money! (Sometimes)
Count four-hour intervals throughout day and keep body topped up with painkillers. Remember (or forget at own risk) to have some laxative - didn't really need to know that did ya, sorry. The codeine resistance is rising, but I'm not too worried as it means I'm more awake, plus I'm one of those awkward buggers that doesn't get addicted to stuff. If I want to stop, I stop - and nothing really dreadful happens, except I have to do less and watch more daytime telly. Which is a big concern, as there's sod all on, not to mention they're not gonna get rid of the licence fee for a good while yet.
Plan/daydream for future when not in this awful inaccessible house.
Spend time with Mr F, who is an excellent cook, even after a hard days work and actually likes it! My mum, gawd bless her, worked full time so I'm less of a good cook and more of a good food unwrapper and heater - not a bad skill in these progressive times though.
Nag each other about weekend decorating. ***News flash in the late editing stages - we're not going to decorate, we're just going to moooovee! Yippee!***
Get a few more zips whilst trying to re-position electrodes or take off at night.
Go to bed, etc, etc.
Sleep.
Conciousness occurs, remember what planet...
Is it working? Nearly. Almost. Pain management and treatment by a specialist physio is on the cards. I'm talking to people about possible new projects somewhere in the distance, and hoping incapacity benefit need not claim me forever yet. Thinking about buying a gym ball. It's bound to have creative possibilities other than the assigned purpose, and I feel a lack of something bouncy in my life, never having had a space hopper when I was little.
So will she bounce or will she break? Only time will tell...
Nearly.
Almost.
Hunter shooting himself the other week sent me into a fit of grieving on top of it all, and some of the specualtion among his friends was that pain had been a factor. It didn't help at the time. But anyway. Apparently it was all planned, and I'm in two minds to decide whether that was a tragedy, or just to admire the way he chose to check out. He was an exceptional freak. As I said in another post before the news broke, self-extinction has crossed my mind too. Don't take this too seriously - remember I'm prone to gothic indulgements - thinking about death is often a recreational habit. But to choose to go rather than wait for death to take you unawares does have its appeal. You can say goodbye to stuff. Get your affairs in order (my paperwork is so messed up it looks like I'm here for a good while yet...). And... other things. I dunno now I come to think about it, maybe if I do ever get there I'll do a list for ya.
But don't hold your breath, cos... me and my TeNS machine are new best friends. Earlier on last week we went on a short break together which worked out very well. I spent some time reading the manual in a little premier travel inn in freezing Sussex. I read a manual when I borrowed one, and I just assumed that having read that, there was nothing more to learn in the new one. Not so. Another trawl brought up a gem, like how to break muscle spasms by turning the pulse rate up high enough to give you even stronger muscle spasms...! The theory is you can break your muscles out of a spasm by out-spasm-ing them even more. Classy or what? Revenge on the unruly body. After some experiments I managed to invent a new party piece, which I shall call "spazzzing frog". I can see "spazzzing frog" is going to have many applications in my capacity as a disabled secret agent as well as many entertaining hours at parties. (Note it has 3 ZZZ). Talk about grotesquely fascinating. In addition, the sensations that zap your fingers if you try to pull off one of the electrodes whilst it's still switched on. I've never had such bizarre happenings occur without chemical influence! And, AND it's helping with the pain too. How splendid! Of course, don't try "spazzzing frog" at home unless you are a disability jackass in training, in which case you'll love it.
(To go off the point a little, I really think some crip should do a disability jackass show. We have so many gadgets to attempt hazardous, non- purpose meant stunts on... a huge potential is being wasted. I'd have done it, but now I have my diagnosis - officially fragile - I guess I'd just have to take the role of director and let someone else take the glory. But I'm cool with that).
Anyway, pain, or less pain, as I originally set out to describe. I have a morning routine now. I bought the book by a Professor and expert in my condition, and so will have many new coping insights to share with you all over the next few weeks. Ha. Anyway. Routine. It goes something like this:
Conciousness occurs, remember what planet am on.
Forget about nightmare where I move into neighbours from hell house next door whilst they are on holiday and have to sleep on their dogs bed (yes, really)...
Arrange pillows into small regal pile, sit up, come round a bit more, earphones on, listen to soothing music on ipod. (Yup, I'm a gadget poser, but this is a gadget Very Worth Having if you need to relax)
Take some big painkillers before really awake, set alarm clock for 30 mins and Do Not Move to allow floaty effects to start and preven pain from rearing its ugly head.
Drink lots and lots of water in the meantime - not only does dehydration from painkillers make you feel hungover without any alcohol to start with, but c o n s t i p a t i o n is not your friend.
30 mins later, get up, float/wheel/hobble to bathroom, attend to ablutions. Really wake up when stick electric toothbrush (access aid - saves moving wrist about too much) up my nose. It has happened more than once - apparently poor realisation of exactly where your joints are when you move contributes to toothbrush-up-the-nose syndrome and is Another Thing I can blame on my condition.
Decide whether have energy to have bath... shower... or not...
Go back to bedroom, get new friend TeNS machine out and apply electrodes. Do Spazzing frog. Garrrgh. Properly awake now. Swear a bit when genuinely forget not to remove/replace electrodes when current is running.
Decide what to do with self. Food. I'm on Special K get back into your genes (?! ha.) diet, vain hopes, also I don't have to worry about handling heavy pans or making real food.
- About half morning has gone by as ablutions take ages due to inaccessible bathroom, low energy and and morning stiff joints -
Have little rest.
Float to computer. Check e-mail. Potter.
Do interesting things for rest of day at own pace... stuff. Art stuff. Invoices! Money! (Sometimes)
Count four-hour intervals throughout day and keep body topped up with painkillers. Remember (or forget at own risk) to have some laxative - didn't really need to know that did ya, sorry. The codeine resistance is rising, but I'm not too worried as it means I'm more awake, plus I'm one of those awkward buggers that doesn't get addicted to stuff. If I want to stop, I stop - and nothing really dreadful happens, except I have to do less and watch more daytime telly. Which is a big concern, as there's sod all on, not to mention they're not gonna get rid of the licence fee for a good while yet.
Plan/daydream for future when not in this awful inaccessible house.
Spend time with Mr F, who is an excellent cook, even after a hard days work and actually likes it! My mum, gawd bless her, worked full time so I'm less of a good cook and more of a good food unwrapper and heater - not a bad skill in these progressive times though.
Nag each other about weekend decorating. ***News flash in the late editing stages - we're not going to decorate, we're just going to moooovee! Yippee!***
Get a few more zips whilst trying to re-position electrodes or take off at night.
Go to bed, etc, etc.
Sleep.
Conciousness occurs, remember what planet...
Is it working? Nearly. Almost. Pain management and treatment by a specialist physio is on the cards. I'm talking to people about possible new projects somewhere in the distance, and hoping incapacity benefit need not claim me forever yet. Thinking about buying a gym ball. It's bound to have creative possibilities other than the assigned purpose, and I feel a lack of something bouncy in my life, never having had a space hopper when I was little.
So will she bounce or will she break? Only time will tell...
Friday, February 25, 2005
Being blessed
Ok, how many disabled people out there have been 'blessed' by believers?
Oh, I'm sorry.
But congrats on still being you. We need to be ourselves. Maybe one day they'll wake up to the realisation we are not necessarily living in deficit. Maybe we ARE all here for a reason, if that reason is only to bother Glen Hoddle. (Glen Hoddle is a UK football manager who fell from grace after claiming that disabled people's impairments weres a result of bad karma from past lives. Naturally, the disability world, no, in fact everyone who thought he was a rubbish football manager - opened an ocean of brown stuff upon his head. BTW, I hear his new club has a lively disabled members section...)
I have been blessed. Twice. The Good Guys Don't Judge. Except with blessing you, because you might be in need of a blessing.
The first time, I'd gone to visit a church to see an exhibition of a student's artwork in the foyer. She was a nice lady and I wanted to see her show others her work. Afterwards she invited me to join her at evening service. A couple of my other students were there too, so I though it would be cool to just go along and spend some time with them.
It started off nice and gently, all smiles, a few lively toons. There was clapping. Not as dull a church as the one I'd been to as a kid, nor as frightening as the 'free' one my parents sent me to for a while.
Then it all went pear-shaped. Yikes! My lady pointed me out to the Reverend. Had there been a conspiracy all along? He loomed over the bench where I was sitting. I tried not to shrink back in horror as he placed his big, sweaty paw upon my forehead. The noise went up to 11... People cheered... I wondered if the sweat from his palm would melt my foundation.
"Cure her so she may walk again!" he boomed, to the delight of the congregation. Prayers followed - although my condition is genetic - it runs through me like a stick of Blackpool rock - so I don't see myself as 'sick'. I have some Stuff to deal with, true, but then - everyone has Stuff to deal with, don't they?
I was too embarrassed to blurt this out at the time, but in dreams I see myself spin round, eyes flashing, a shriek errupting from my lips, "IT'S PART OF ME FOREVER! AND I'M NOT SORRY...!!!"....They all fade away. Cut to darkness.
After the service, people gathered round - I was a celebrity touched by the power. They were so happy! It was horrible. Powerless suddenly to back off, the centre of attention for a belief I didn't hold...
I do believe we have a soul, and my soul was wounded that I might be judged in need of 'being put right'. It's truly sad disabled people are regularly seen this way. So much for the social model. Few make the assumption that things might just be right as they are. In circumstances like this, you look back and think of all the witty things you might have said and the different ways you could of handled it. But all I can say after that was I wanted to get the hell out of there, and quickly. I was stunned it had ever happened - all what you'd commonly call Good People who meant me no harm. But there you go - that's diversity. Other people's stuff happens to you too. In ways you can't imagine.
For a while I was wary in case I was cured, or in case anyone came up to me and cured me again. I steered clear of religious people at work. I was grumpier, definitely, with people who suggested cures might come my way.
And then damn me if it didn't happen again! It's art exhibitions in churches that do it. Maybe I should just look on them as occupational hazards of my job.
I was semi ready this time, as the vicar steered himself my way, a beatific smile on his face. On this occasion, I was exhibiting some work and it was the private view.
"HELLO" he said, in capitals. "ARE YOU HERE TO SEE SOMEBODY'S WORK?"
"Yes", I replied, feeling defensive. "Mine."
"OH" he boomed, "HOW CLEVER. WHICH ONE IS YOURS?"
I pointed to a series of work I'd done with a distinct disability activist theme. "These", I replied, in such a way I hoped convey pride, savvy, and intelligence.
"Oh", he said distantly. His voice dropped a few decibels. You may find that in this sort of situation your companion will slide the conversation onto something else, usually a personal question that destabilises you as capable-adult in some way.
"How did you get here tonight? Your parents?"
"No, I drove myself."
"Alone? You can drive?!..."
We went on in what I could only describe as parley, with me assuring him I was independent, drove and didn't live at home with my parents - fair enough, being 34 years of age. I thought I was holding my own. I lived with my partner, I told him. After 11 years, we were too serious to say 'boyfriend'. And this vicar was making me feel about 12 years old. Big mistake. I forgot the big guy was probably used to careful language. A little wave of shock danced accross his face.
"Partner? Ohhh! You mean you're a lesbian?!"
Dammit, I wished I was for a moment - I'd never have been happier to proclaim it.
Instead, I 'fessed up to Living In Sin with a Man. (And being disabled, making activist artwork, and attending private views, in my own car). I'm sure it isn't a lesser crime in the bible, but the vicar rallied admirably.
He blessed me. He laid his hand on my shoulder. Heavily. Was it shock or will to impose?
"No thank you", I said.
No thank you.
Besides, ever thought disabled people might be the ones who are here to teach You a lesson, huh, buddy?
Oh, I'm sorry.
But congrats on still being you. We need to be ourselves. Maybe one day they'll wake up to the realisation we are not necessarily living in deficit. Maybe we ARE all here for a reason, if that reason is only to bother Glen Hoddle. (Glen Hoddle is a UK football manager who fell from grace after claiming that disabled people's impairments weres a result of bad karma from past lives. Naturally, the disability world, no, in fact everyone who thought he was a rubbish football manager - opened an ocean of brown stuff upon his head. BTW, I hear his new club has a lively disabled members section...)
I have been blessed. Twice. The Good Guys Don't Judge. Except with blessing you, because you might be in need of a blessing.
The first time, I'd gone to visit a church to see an exhibition of a student's artwork in the foyer. She was a nice lady and I wanted to see her show others her work. Afterwards she invited me to join her at evening service. A couple of my other students were there too, so I though it would be cool to just go along and spend some time with them.
It started off nice and gently, all smiles, a few lively toons. There was clapping. Not as dull a church as the one I'd been to as a kid, nor as frightening as the 'free' one my parents sent me to for a while.
Then it all went pear-shaped. Yikes! My lady pointed me out to the Reverend. Had there been a conspiracy all along? He loomed over the bench where I was sitting. I tried not to shrink back in horror as he placed his big, sweaty paw upon my forehead. The noise went up to 11... People cheered... I wondered if the sweat from his palm would melt my foundation.
"Cure her so she may walk again!" he boomed, to the delight of the congregation. Prayers followed - although my condition is genetic - it runs through me like a stick of Blackpool rock - so I don't see myself as 'sick'. I have some Stuff to deal with, true, but then - everyone has Stuff to deal with, don't they?
I was too embarrassed to blurt this out at the time, but in dreams I see myself spin round, eyes flashing, a shriek errupting from my lips, "IT'S PART OF ME FOREVER! AND I'M NOT SORRY...!!!"....They all fade away. Cut to darkness.
After the service, people gathered round - I was a celebrity touched by the power. They were so happy! It was horrible. Powerless suddenly to back off, the centre of attention for a belief I didn't hold...
I do believe we have a soul, and my soul was wounded that I might be judged in need of 'being put right'. It's truly sad disabled people are regularly seen this way. So much for the social model. Few make the assumption that things might just be right as they are. In circumstances like this, you look back and think of all the witty things you might have said and the different ways you could of handled it. But all I can say after that was I wanted to get the hell out of there, and quickly. I was stunned it had ever happened - all what you'd commonly call Good People who meant me no harm. But there you go - that's diversity. Other people's stuff happens to you too. In ways you can't imagine.
For a while I was wary in case I was cured, or in case anyone came up to me and cured me again. I steered clear of religious people at work. I was grumpier, definitely, with people who suggested cures might come my way.
And then damn me if it didn't happen again! It's art exhibitions in churches that do it. Maybe I should just look on them as occupational hazards of my job.
I was semi ready this time, as the vicar steered himself my way, a beatific smile on his face. On this occasion, I was exhibiting some work and it was the private view.
"HELLO" he said, in capitals. "ARE YOU HERE TO SEE SOMEBODY'S WORK?"
"Yes", I replied, feeling defensive. "Mine."
"OH" he boomed, "HOW CLEVER. WHICH ONE IS YOURS?"
I pointed to a series of work I'd done with a distinct disability activist theme. "These", I replied, in such a way I hoped convey pride, savvy, and intelligence.
"Oh", he said distantly. His voice dropped a few decibels. You may find that in this sort of situation your companion will slide the conversation onto something else, usually a personal question that destabilises you as capable-adult in some way.
"How did you get here tonight? Your parents?"
"No, I drove myself."
"Alone? You can drive?!..."
We went on in what I could only describe as parley, with me assuring him I was independent, drove and didn't live at home with my parents - fair enough, being 34 years of age. I thought I was holding my own. I lived with my partner, I told him. After 11 years, we were too serious to say 'boyfriend'. And this vicar was making me feel about 12 years old. Big mistake. I forgot the big guy was probably used to careful language. A little wave of shock danced accross his face.
"Partner? Ohhh! You mean you're a lesbian?!"
Dammit, I wished I was for a moment - I'd never have been happier to proclaim it.
Instead, I 'fessed up to Living In Sin with a Man. (And being disabled, making activist artwork, and attending private views, in my own car). I'm sure it isn't a lesser crime in the bible, but the vicar rallied admirably.
He blessed me. He laid his hand on my shoulder. Heavily. Was it shock or will to impose?
"No thank you", I said.
No thank you.
Besides, ever thought disabled people might be the ones who are here to teach You a lesson, huh, buddy?
Friday, February 18, 2005
Getting Wired
I've been searching for alternative pain relief since being taken off my anti-inflammatorys just before Christmas. Vioxx and Celebrex are no more in the UK - well, nobody'll gimme 'em any anymore, which is a bea-tch because my guts don't like the other stuff - voltarol, ketoprofen, naproxen and so on.
I was in hospital a while ago complaining when my dose of diclofenac was put up, knowing full well my stomach wasn't up to it. Two days later curled up in a ball groaning and puking, a rhematologist came along and said "you're not feeling very well, are you?" (Thank God For The Ones Who Notice) The man put me on Vioxx and to be honest, sometimes, (well, if I was single anyway) I think I'd rather take the drug and take the risks. I've taken enough risks with other drugs - one which is actually doing me some good, in enabling me to feel better, would be worth taking a chance on... more so than ones that just encourage me to eat my own bodyweight five times over, commune with psychedelic amphibians, float, watch cr@ppy films, and... I could go on, but I think you get the picture.
I'd really like to ring the fools at the Celebrex PR office for announcing it just before Christmas, the ultimate season of pigging out, knowing full well all the poor buggers who were on it were probably taking it because all the other pills ate up their stomach linings. Some fool up there ruined Christmas for a lot of disabled people, and I'll be adding them to my list for glorious retribution at some point in the future.
So Christmas feasting was postponed due to me trying ketoprofen again. Arrgh. I was predicably sick, acid reflux and so on. At least I didn't put on any weight on, although Mr Fang's parents bought us a bread machine so I have made up for it since.
Since then I've been eating painkillers, being off work, and taking life in the slow lane. I can't, I won't quite believe this is IT on the pain solution front. What a crappy way to live. My local hospital say it'll be 5 months or so before I can see a specialised physio or have any pain management too. I'm determined not to be found dead next to a note that says I can't take it anymore - but I have thought about it. And decided not yet. Coming back to this entry today and editing it is particularly poignant as I've just discovered one of my all time heros, Hunter S. Thompson is dead. I wonder what would happen to the system if one criteria for urgent treatment was getting to the point where you sit at home with a gun to your head? Oh, Hunter...
Somebody convert me, fool me, sell me a quack cure, convince me to wear a turquoise tracksuit or whatever, and I'll do it, I'm ready. Bring it on as long as it tricks my foggy, opiate ridden brain into thinking pain is not devilling me any more. Just for a little while. I'm alright really. Aren't I? But sometimes when you're not having a good time, and your mind explores the options... stuff flits into your head.
Deep down I'm chicken, boring and sensible though, so last Thursday I took myself off to the local chemists and borrowed a tens machine. Bless the chemist for doing something like this - you don't want to buy one and find out they're not for you, and the only other route to borrowing is usually the NHS. And you have to get there first.. which is a circus and takes too bloody long for people who have chronic complaints as opposed to the ones who have something spectacular and urgent guaranteed to push up the stats.
I'm going to finish the blog about the TeNS machine some other time.
I was in hospital a while ago complaining when my dose of diclofenac was put up, knowing full well my stomach wasn't up to it. Two days later curled up in a ball groaning and puking, a rhematologist came along and said "you're not feeling very well, are you?" (Thank God For The Ones Who Notice) The man put me on Vioxx and to be honest, sometimes, (well, if I was single anyway) I think I'd rather take the drug and take the risks. I've taken enough risks with other drugs - one which is actually doing me some good, in enabling me to feel better, would be worth taking a chance on... more so than ones that just encourage me to eat my own bodyweight five times over, commune with psychedelic amphibians, float, watch cr@ppy films, and... I could go on, but I think you get the picture.
I'd really like to ring the fools at the Celebrex PR office for announcing it just before Christmas, the ultimate season of pigging out, knowing full well all the poor buggers who were on it were probably taking it because all the other pills ate up their stomach linings. Some fool up there ruined Christmas for a lot of disabled people, and I'll be adding them to my list for glorious retribution at some point in the future.
So Christmas feasting was postponed due to me trying ketoprofen again. Arrgh. I was predicably sick, acid reflux and so on. At least I didn't put on any weight on, although Mr Fang's parents bought us a bread machine so I have made up for it since.
Since then I've been eating painkillers, being off work, and taking life in the slow lane. I can't, I won't quite believe this is IT on the pain solution front. What a crappy way to live. My local hospital say it'll be 5 months or so before I can see a specialised physio or have any pain management too. I'm determined not to be found dead next to a note that says I can't take it anymore - but I have thought about it. And decided not yet. Coming back to this entry today and editing it is particularly poignant as I've just discovered one of my all time heros, Hunter S. Thompson is dead. I wonder what would happen to the system if one criteria for urgent treatment was getting to the point where you sit at home with a gun to your head? Oh, Hunter...
Somebody convert me, fool me, sell me a quack cure, convince me to wear a turquoise tracksuit or whatever, and I'll do it, I'm ready. Bring it on as long as it tricks my foggy, opiate ridden brain into thinking pain is not devilling me any more. Just for a little while. I'm alright really. Aren't I? But sometimes when you're not having a good time, and your mind explores the options... stuff flits into your head.
Deep down I'm chicken, boring and sensible though, so last Thursday I took myself off to the local chemists and borrowed a tens machine. Bless the chemist for doing something like this - you don't want to buy one and find out they're not for you, and the only other route to borrowing is usually the NHS. And you have to get there first.. which is a circus and takes too bloody long for people who have chronic complaints as opposed to the ones who have something spectacular and urgent guaranteed to push up the stats.
I'm going to finish the blog about the TeNS machine some other time.
Sunday, February 13, 2005
A Diagnosis! In Dobly!
Has anyone noticed? I think one person is reading, and thank you very much.
I'm back.
After the last rant about thoughtless doctors, I met one with a brain (oh yes!) - and he has fully diagnosed my condition.
I knew I was getting close to a diagnosis, which is why it was on my mind. Be careful what you ask for... no, that's stupid, I knew he wasn't going to tell me I had a career waiting as a prima ballerina, and a positive diagnosis will stop other, incompetent doctors proposing inappropriate treatment, operations, and even on one occasion, a mental health problem (apart from the one I knew I had... it was a long time ago... etc...).
So after 35 years of being me, it has been an unexpected head-trip to find out that many things are not just my own unique quirkiness, but are owned by a whole 'nother bunch of genetically freestyling humans as well.
Anyway, so that's my excuse for not maintaining my blog. Sorry.
Now I'm going through a mental gamut of Thank Goodness! Oh God! What Next?! as any 'normal' person would. (That bit kind of amuses me....). The doctor has given me a bit of time off to organise new treatments, better gadgets and various tests to see if other bits of me are: a) in the right place b) the right size and c) still working.
I just found out my heart and important various blood vessels are normal, and, for a sad old goth as I'm sure you can appreciate, this was a bit of a shock. (Partly in a good way, I will grudgingly admit.)
Mr Fang, who is a sad old rocker, is always taunting me about dead goths, saying there aren't any, which is a bit of a poor show for a sub-culture obsessed with death. But then again, if we were dead, we wouldn't be able to enjoy the anticipation of death, would we? Ha. (But if you're reading this and you know of any dead goths, would you drop me a line? Make sure they're famous, preferably nationally / internationally - it's no good trying to win and argument with Mr F over someone's goth mate who's only a legend in their local boozer's band. It'd have to be in the Hussey/Eldritch league to be any good. Thanks).
But that's not all that's been happening. The somewhat dazed and confused diagnosis-type atmosphere currently hanging over our house has partly been broken by a foolish whim I had a few weeks ago, setting in place an ugly and disturbing mental infestation of myself and Mr F - only he likes it - and I don't.
It started when I was in a discount bookshop a few weeks ago and bought him a book. It cost �1.68. I bought it because I love him, and because I thought it would be a Very Small Passing Thing, because if something is being sold in this shop, for less than a fiver, it poses no danger of infatuation to anyone anymore. It is last years news. OVER. OVER AND GONE.
But oh, how wrong I was...!
The book is called "This Is Spinal Tap - The Official Companion."
Y'see, if ya haven't seen or heard of Spinal Tap, you might as well stop reading now - because the rest of this blog will probably ramble on about an in-joke rock band parody, which is what Spinal Tap was - a comedy film of a 'band' living the rock'n'roll lifestyle, but the joke is oh, how close to reality it actually was. Any bloke who has ever worn spandex, played guitar in a crap rock band (and plenty of good ones as well... Justin Hawkins, pay mind to your trouser situation), or stuffed anything, vegetable, sock or the like, down the trouser department, will identify with the soul of this movie.
'Spinal Tap' wrote songs, have albums on sale, and performed at gigs, as well as shooting the film 'This Is Spinal Tap' and 'The Return Of Spinal Tap'. And it has a cult following, which had largely passed over me apart from the odd occasion I went out with rockers instead of goths, well, in fact, I only went out with one rocker, and then I married him, so I had seen it, got the jokes, noted the comparisons in his record collection, (and seeing as there's a band out there called Whitesnake, allegedly named after the frontman's dick), I believed it. And as far as the world of rock'n'roll goes, Mr F has been there, seen it, done it, and got the t-shirts - all duly covered in those tell-tale little holes... you know what I'm talking about... so it resonates with his very soul.
But I thought that bit of his soul was buried deep down by now. We're thirty-somethings who've settled down to nights in front of the telly. A bit of gardening at weekends. His favourite way to unwind is to cook a nice meal... so I woefully underestimated the effect that this book would have...
On being presented with it, it was seized, digested, and regurgitated at frightening speed. I would be upstairs pottering about when hysterical snorts and chuckles would float through the house, accompanied by wobbly nostalgic singing.
Within 2 days of getting the book, we were sitting down to the dvd.
All the old lines. All the old songs. "(Listen to the) Flower People", "Gimme Some Money", "Big Bottom", "Sex Farm", et al. I merely thought it would be an evening's distration and forgot how catchy those damn songs were, and the effect they had on Mr F, who joyously rediscovered his inner 14 yr old greebo, hollering "talk about bum cakes, my girl's got 'em', every flippin' time I passed by.
Taking in my diagnosis, going for tests and reading up about what afflictions may beset me in coming years has had a somewhat surreal quality as we simultaneously wallow in Spinal Tap lyrics. Like in hospital. 9 o'clock in the morning. I'm shivering in a hospital gown, covered from navel to chest in cold blue goo, looking at him smiling reassuringly as he mouths....
... "Working onna SEX FARM, Tryin' to raise some HARD LOVE, Getting out ma PITCH FORK, POKING your HAY.... SEX FARM WOMAN....."
In the car, with the results, going home, with him singing, "I saw her on Monday, 'twas my lucky BUM DAY, ya know WHAT I MEAN... I love her each weekday, each VELVETY CHEEK DAY, ya know WHAT I MEAN..."
It's frighteningly ironic, but my condition is a genetic connective tissue disorder called Ehlers-Danlos Syndrome. It causes a varying amount of symptoms, and one of them is - wait for it - 'velvety' skin...!
Can I ever put into words the feeling in my heart as he turns to me whilst singing this particular line and gives me a fond little wink?
It must be in the stars.
So that's where we're at, at the moment. We spent the weekend decorating and simultaneously singing Spinal Tap lyrics. I didn't want to, but they've infected me too. Our dratted cheapo DVD player that never plays anything you put in it without a fight, automatically switches on the Spinal Tap film as soon as we plug the telly back in, like some kind of demonic portent. He gives me this look, and I say ok. It'll pass. It's better than wallowing in pity. Just.
(Except the buggers made a sequel - The Return Of Spinal Tap - and he made me order it seeing as I'm at home all day. We're stuck, stuck in the middle of a Spinal Tap infested dreamstate until it arrives, and he promptly learns new song, like "Bitch School", "The Sun Never Sweats" and 'Break Like The Wind"...)
Help!
I'm back.
After the last rant about thoughtless doctors, I met one with a brain (oh yes!) - and he has fully diagnosed my condition.
I knew I was getting close to a diagnosis, which is why it was on my mind. Be careful what you ask for... no, that's stupid, I knew he wasn't going to tell me I had a career waiting as a prima ballerina, and a positive diagnosis will stop other, incompetent doctors proposing inappropriate treatment, operations, and even on one occasion, a mental health problem (apart from the one I knew I had... it was a long time ago... etc...).
So after 35 years of being me, it has been an unexpected head-trip to find out that many things are not just my own unique quirkiness, but are owned by a whole 'nother bunch of genetically freestyling humans as well.
Anyway, so that's my excuse for not maintaining my blog. Sorry.
Now I'm going through a mental gamut of Thank Goodness! Oh God! What Next?! as any 'normal' person would. (That bit kind of amuses me....). The doctor has given me a bit of time off to organise new treatments, better gadgets and various tests to see if other bits of me are: a) in the right place b) the right size and c) still working.
I just found out my heart and important various blood vessels are normal, and, for a sad old goth as I'm sure you can appreciate, this was a bit of a shock. (Partly in a good way, I will grudgingly admit.)
Mr Fang, who is a sad old rocker, is always taunting me about dead goths, saying there aren't any, which is a bit of a poor show for a sub-culture obsessed with death. But then again, if we were dead, we wouldn't be able to enjoy the anticipation of death, would we? Ha. (But if you're reading this and you know of any dead goths, would you drop me a line? Make sure they're famous, preferably nationally / internationally - it's no good trying to win and argument with Mr F over someone's goth mate who's only a legend in their local boozer's band. It'd have to be in the Hussey/Eldritch league to be any good. Thanks).
But that's not all that's been happening. The somewhat dazed and confused diagnosis-type atmosphere currently hanging over our house has partly been broken by a foolish whim I had a few weeks ago, setting in place an ugly and disturbing mental infestation of myself and Mr F - only he likes it - and I don't.
It started when I was in a discount bookshop a few weeks ago and bought him a book. It cost �1.68. I bought it because I love him, and because I thought it would be a Very Small Passing Thing, because if something is being sold in this shop, for less than a fiver, it poses no danger of infatuation to anyone anymore. It is last years news. OVER. OVER AND GONE.
But oh, how wrong I was...!
The book is called "This Is Spinal Tap - The Official Companion."
Y'see, if ya haven't seen or heard of Spinal Tap, you might as well stop reading now - because the rest of this blog will probably ramble on about an in-joke rock band parody, which is what Spinal Tap was - a comedy film of a 'band' living the rock'n'roll lifestyle, but the joke is oh, how close to reality it actually was. Any bloke who has ever worn spandex, played guitar in a crap rock band (and plenty of good ones as well... Justin Hawkins, pay mind to your trouser situation), or stuffed anything, vegetable, sock or the like, down the trouser department, will identify with the soul of this movie.
'Spinal Tap' wrote songs, have albums on sale, and performed at gigs, as well as shooting the film 'This Is Spinal Tap' and 'The Return Of Spinal Tap'. And it has a cult following, which had largely passed over me apart from the odd occasion I went out with rockers instead of goths, well, in fact, I only went out with one rocker, and then I married him, so I had seen it, got the jokes, noted the comparisons in his record collection, (and seeing as there's a band out there called Whitesnake, allegedly named after the frontman's dick), I believed it. And as far as the world of rock'n'roll goes, Mr F has been there, seen it, done it, and got the t-shirts - all duly covered in those tell-tale little holes... you know what I'm talking about... so it resonates with his very soul.
But I thought that bit of his soul was buried deep down by now. We're thirty-somethings who've settled down to nights in front of the telly. A bit of gardening at weekends. His favourite way to unwind is to cook a nice meal... so I woefully underestimated the effect that this book would have...
On being presented with it, it was seized, digested, and regurgitated at frightening speed. I would be upstairs pottering about when hysterical snorts and chuckles would float through the house, accompanied by wobbly nostalgic singing.
Within 2 days of getting the book, we were sitting down to the dvd.
All the old lines. All the old songs. "(Listen to the) Flower People", "Gimme Some Money", "Big Bottom", "Sex Farm", et al. I merely thought it would be an evening's distration and forgot how catchy those damn songs were, and the effect they had on Mr F, who joyously rediscovered his inner 14 yr old greebo, hollering "talk about bum cakes, my girl's got 'em', every flippin' time I passed by.
Taking in my diagnosis, going for tests and reading up about what afflictions may beset me in coming years has had a somewhat surreal quality as we simultaneously wallow in Spinal Tap lyrics. Like in hospital. 9 o'clock in the morning. I'm shivering in a hospital gown, covered from navel to chest in cold blue goo, looking at him smiling reassuringly as he mouths....
... "Working onna SEX FARM, Tryin' to raise some HARD LOVE, Getting out ma PITCH FORK, POKING your HAY.... SEX FARM WOMAN....."
In the car, with the results, going home, with him singing, "I saw her on Monday, 'twas my lucky BUM DAY, ya know WHAT I MEAN... I love her each weekday, each VELVETY CHEEK DAY, ya know WHAT I MEAN..."
It's frighteningly ironic, but my condition is a genetic connective tissue disorder called Ehlers-Danlos Syndrome. It causes a varying amount of symptoms, and one of them is - wait for it - 'velvety' skin...!
Can I ever put into words the feeling in my heart as he turns to me whilst singing this particular line and gives me a fond little wink?
It must be in the stars.
So that's where we're at, at the moment. We spent the weekend decorating and simultaneously singing Spinal Tap lyrics. I didn't want to, but they've infected me too. Our dratted cheapo DVD player that never plays anything you put in it without a fight, automatically switches on the Spinal Tap film as soon as we plug the telly back in, like some kind of demonic portent. He gives me this look, and I say ok. It'll pass. It's better than wallowing in pity. Just.
(Except the buggers made a sequel - The Return Of Spinal Tap - and he made me order it seeing as I'm at home all day. We're stuck, stuck in the middle of a Spinal Tap infested dreamstate until it arrives, and he promptly learns new song, like "Bitch School", "The Sun Never Sweats" and 'Break Like The Wind"...)
Help!
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