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."


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.

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"...)