Blood feud

I’ve always wanted to give blood.  I’ve got nothing like an aversion to needles or fear of seeing blood.  I quite like watching it trickle into the phial every time I have to have some taken (which is quite often).  I love the colour of de-oxygenated blood from the veins.  Arterial’s a bit bright and claggy though.  Something has always happened to rule me out as donor.  Either I had a cold or an infection or a wound and was rejected.  So when the anaesthetist told me today that it might happen that I’d need some transfusion in a few days, I thought well, what’s my blood group and I’ll find out whether I’m allowed to give blood these days.

I suspected the answer would be no, and I thought it would be because I self-inject my serum of genetically modified hamster ovaries three times a week.  I knew that piercing the skin was something frowned upon by the donor clinics.  I’m a common as muck type O+, so my blood can be given to anyone else with a + type, be they A, B, AB or O.  My Mum, as a B+ could have had a transfusion from me, but I couldn’t have had one from her.  O type wants only O type back and the rhesus must be right.  So if you’re not O+, you’re no good to me. However, 85% of the country could use my blood.

So I phoned up the blood drive people and asked.  I said I just want to find out if I’m allowed to give blood yet.  I have Multiple Sclerosis and I inject with Interferon Beta 1a regularly.  The guy on the other end with a charming Irish accent (who sounded eerily like my neurologist but said sadly no, although he’d like the salary), looked up Multiple Sclerosis in the list and said “oop, nooo.”  Naturally I asked why.  He wasn’t able to tell me but he could tell me it was nothing to do with medication and was down to the condition itself.  That it might be for reasons of the impact losing a pint of blood might have on me as a result of the condition, but he couldn’t be sure.  He took my number and said he’d get someone to call me back.  I thought that might not happen and I started to think about what I could do about this.  I was ready to be quite indignant that surely it’s up to me to know whether I’m strong enough to lose a pint of blood once a quarter.

The phone rang about half an hour later and it was a doctor in Serology at Newcastle.  She explained that although they don’t think MS can be passed blood to blood, there’s no proof that’s the case so they currently can’t use my blood as it’s considered a potential risk.  Oh.  I told her that it seemed a shame but I understood and I told her that I was ready to start questioning the relevant people if it had been only for my protection, but that I supposed all I could do now was wait for someone to discover the full cause of MS or I could become a researcher and make it my mission in life.  

I then thought that it might actually be a good thing that I’d always been prevented from donating since I can trace this back 26 years although only had a name for it for 8 of those.  I suppose if I had been giving blood all these years, we might know whether it can be transmitted that way, but there must be undiagnosed polka-dot brainers out there who do give blood and no-one is any the wiser.  I’ve never had a transfusion, so I couldn’t point and say find out who my donor was and see whether there’s a link.  As far as I know, I got a specific gene (from my father), a lack of vitamin D (i.e. I live in England!) and I tried to crack my skull when I was 6.  To have symptoms by age 8, there are very few external factors that can be involved.  I didn’t smoke, I didn’t drink, I’ve never had measles and I didn’t get chickenpox until later.  Epstein Barr probably didn’t do it.  Even as a new-born I had a massive immune reaction to anything vaguely alien, so it’s probably always been there.  

Who do I have to tell this to?  How do I make the point that it’s something you’re probably born with but need circumstances and a trigger to close the circuit?  All I want to do is give blood.  I can pass on an army of Special Forces T-Cells temporarily, but I can’t pass on my entire immune system.  Even if I have a highly unexpected accident of fertility, there’s only a 12.5% chance I can pass it on.  Am I the only person with MS that can provide this level of information about my development?  I can’t be.  The answer has to lie in the information we give that they write down then ignore for the rest of our career as patients.  Maybe I should start shouting.  Maybe I should start compiling records and interviewing patients.  Maybe if I can find you’re born with the probability I can give some of my blood to someone that really needs it.

Genius

I was just reading a brief news article about a man from the UK who, since a knock on the head as a child, has had an IQ greater than Einstein and Hawking, is able to solve complex mathematical problems in his mind, but is working as a window cleaner because he can’t find anyone to make use of his mental abilities.

I read a few comments on the story and see that most people feel that mathematical ability is insufficient by itself for genius.  But what makes true genius?  They say true genius is tinged with madness.  Perhaps that’s where he’s going wrong – he’s not barking mad.  But then, what is madness?

When I let my mind run off by itself chasing tangents and abstracts, telling stories to itself to build an abstract into a concept and turning an insignificant idea into its own microcosm where anything might happen, people tell me I’m mad.  I don’t have the IQ of a genius though, so I can only be a reasonably intelligent madwoman.  I certainly can’t work out complex mathematical problems in my head.  I can just about work them out with a pencil and paper, but really I prefer to use Excel to figure it out.  I apply my madness to the things I do though, and it usually gives them a uniqueness and personality all of their own.  I write with madness, I make things with madness.  I even cook with madness.  I use madness to translate the work of people with enormous IQs into something that everyone can understand and things that everyone can understand into something the huge IQs can relate to and work with.  I sometimes have some really good ideas through madness.  But I’m no genius.

So what makes a mind truly brilliant?  Is it an acute intelligence that sees too much and becomes mad?  Or is it a madness that develops an acute intelligence to try and make sense of itself? 

I tried to make sense of myself.  It made me depressed.  My madness is what sparks my creativity and gives me the whim to invent something that’s really quite cool.  To me anyway.  It might just look like the creation of a lunatic to anyone else, but it pleases me.  If I had an IQ a few points higher, would I be an actual genius, though?

Probably not.  A true genius, my madness tells me, needs the drive and ambition to do something truly amazing.  A true genius must have an incredible IQ, drive, and ambition, the ability to conceptualise and turn the abstract into the tangible, and the madness to believe it.  Self-belief is fundamental to true genius.  You can’t be a true genius and doubt your theories and inventions.  Perhaps if I underwent some hypnotherapy to give me the self-belief I lack, I could be a true genius.  I have all of the building blocks except the IQ and maybe with practice I could open up those neural pathways I know so much about but don’t use and hit that target too.

Does anyone really want to be a true genius though?  It must be a very lonely existence.  There can’t be many people who would relate to or understand a true genius.  They might get the basis of some of your thoughts, but would they ever know how to really reach you in your own crazy world of ideas and concepts?  It’s probably much easier to be a slightly mad normal person, or a hyper intelligent normal person than to package it all up into a true genius.  All most of us want is an easy life and we let those that are brave enough to have true genius solve all the big problems so that we can carry on with minimal effort.

By my own logic, there shouldn’t be anything stopping me boosting my IQ, having those ideas that make me a true genius and the acumen to make them a reality.  I’m certainly not too concerned about having an easy life and I’m certainly used to being separate from most of the world.  It wouldn’t bother me too much to have a few fewer people understand what I’m on about.  So why not try?  Well, because unlike the window cleaner who wants more than being average with a phenomenal IQ, I quite like being average with a bit of madness.  This way I can laugh at myself and I can laugh at the absurdities of the world, but not feel obliged to put things right.  Is that apathy?  Well maybe it is.  If I change my mind (quite literally if I even hope to unlock all that potential), I can almost guarantee I’ll write about it.  What I can’t guarantee is that anyone will have the vaguest idea what I’m talking about.

Department With Problems

I just went to fill in some forms for the DWP using the online service.  Turns out if you’re using anything more recent than Windows XP, you’re out of luck.  If you’re using ’98 though, you can fill out all the forms you could want.

How frustrating that is I can’t quite describe.  You try to do things in the most efficient, low cost, instant way to benefit both you and the administration, and because you happen to be up to date at your end, you can’t go any further.  Does having a disability mean you should be years behind the times with your technology?  For many of us, technology is the means by which we manage our lives.

I had to rack up some debt to get a new laptop just last week because without the Internet my life would be beholden to others to get me around and do virtually everything for me.  I prefer to do everything for me virtually.  My banking, my shopping, my access to information, keeping up to date with friends and family – all done online because I can’t get around like I used to.  So why would people in the same situation not have up to date systems to help them make the most of what’s available?  It looks like the government thinks that because I can’t keep up with the average walking pace, I also can’t keep up with technology.

I’ve downloaded an editable (40 page plus 18 pages of notes) PDF and filled it all in, however I need a statement from ‘someone who knows me’ in a relevant capacity so I need to print the thing out, sign it, get other signatures, and to do that I’ll have to trek around in taxis (vertigo and public transport not being compatible).  I don’t have a printer, or at least no ink, so either spend a fortune on cartridges and paper for this one document or get someone else to print it – more delays – before I can even complete the form.  I’m not sure that’s entirely preferable to getting them to send out a form, wait for it to go through the system and then through the second class mail (because they only use second class unless they’re demanding money).  At least the download version is legible and automatically fits text to fields.  This ongoing argument with my right hand might have prompted them to send it back and tell me to type it anyway!  I’ll fill it all in and then I’ll make the more than a mile round trip on foot to post it back.  They do know what these forms are for, right?

Is it not hard enough for people to accept that life has come to this without all these added frustrations?  I’m entitled to some help to deal with the costs of having to get taxis and use delivery services.  I’m still paying tax and contributions, so why should I feel like it makes me a lesser member of society to get some of that back?  It shouldn’t, but it does.  I paid in, things went wrong.  I need a return on my investment, but because so many people play the system I have to jump through hoops (thankfully not literally although that might be amusing for onlookers) to get it and I also become one of those people that society grumbles about.  Not the absolute top of the hit list – I work and want to work until I absolutely can’t – but I’m up there with the fakers and cheats because disability is the favourite scam among scammers.  I’ve never so much as pinched a sweet off the pick n mix counter, I have such a crucifying conscience, and now I’m going to feel like I’m stealing just because of the attitudes I know I’ll meet.

So when I try to sort it all out in the quietest, most unobtrusive way and I’m knocked back because the government got stuck at 2007, I could scream.  It won’t make a blind bit of difference who I speak to or what letters I write (by email to save the hike to the post office), there’ll be no updates and no doubt the explanation will be costs.  How about I volunteer to fix your damn website and you sort out my claim as a thank you?  I figured it out though - DWP – Doesn’t Want Progress, Does Want Paperwork.

Life imitating art, imitating life

Isn’t it strange how the lyrics of a song can suddenly make so much sense to you but in a way they were probably never intended?

I had a terrible migraine last night, and it got worse when I shut my eyes.  It burned itself out eventually and I ended up sleeping through the day and now sitting here wide awake at an ungodly hour.  Those hours when you think too much because there’s little else to do.

I was thinking about my now imminent surgery and the things I need to do to be prepared.  Things such as the antibacterial bathing for five days beforehand that will destroy my skin and hair in order to hopefully take out any presence of good old staph aureus in the blast.  By the way, I showered twice a day with allegedly antibacterial shower gel the last time I was in hospital, both before and after I was sliced open, and I still got a staph aureus infection in the wound.  Either the gels you buy from the pharmacy aren’t up to the job and aren’t worth the extra cost, or I was destined to get it regardless.  Sometimes you can’t beat nature even if you are human and accustomed to forcing it to your will.

This surgery will hopefully mean I can eat properly again; get some of that nutrition stuff this bag of genetic hiccups seems to want.  That should finally help me recover from the other problems that have been plaguing me for far longer than they should have.  Usually, I have a glitch for a while – a week, a month, a quarter – then bounce back and function (almost) normally.  That just isn’t happening despite the great help I’ve had and the experimental solutions I’ve agreed to report on to help others should they end up with the same bizarre configuration of happenings.

It might not have dragged on for this length of time were it not for the fact that I have The Biggy underlying the Dinky and everyone, in their professional capacity, wants to blame The Biggy.  Poor thing, it gets the blame for everything and I’m the only one that defends it.  After all this time, it’s like an old friend.  Not one I’d add to the Christmas card list – we’re on somewhat awkward terms – but I refuse to listen when I know it isn’t the culprit.  But because it has form it gets sent down without a trial.  I knew it wasn’t to blame and I kept shouting, but did they listen?  No.  Did they take off their spectacles and sit back as soon as I said I was an associate of The Biggy?  Yes.

The greatest tragedy in my life is what made them finally sit up and listen.  Because of what happened to my lovely Mum, they thought “oh” and sent me for a scan.  Lo and behold, an answer that absolves The Biggy, an alibi, the seond gunman emerged from behind the grassy knoll.  The long and the short of it is I’m being sliced and diced to resolve the Dinky so that The Biggy can be appeased and go back to sleep for as long as it cares to.

The thought took my unravelling mind down a path in perfect parallel to a song I’ve known for a lot of years now.  For the Ocean by Finger Eleven, from the Greyest of Blue Skies album (2000).  View the full lyrics here or even better, listen to the song here.   

I was reminded of “It’s like waiting for the ocean to save you from the waves” so strongly I could hear the track playing over the speakers of my brain, and when I listened to it again, I thought the whole track could describe my life (albeit in a somewhat abstract fashion).  So strange, I thought, that life sometimes does imitate art, and also the converse in even the most mundane ways.  Next Tuesday, the ocean will, fingers crossed (only ten fingers), save me from the waves.  Do you wonder how I stay so complacent…?

Waste not, breathe not

So the local council have changed the waste collection days to once a fortnight – green bin for general waste one week, blue bin for recycling the next.  They say “We need to make savings, lower our impact on the environment & improve recycling rates”.

They haven’t gone so far as providing composting bins, not that I have a garden big enough to need that much compost, but what am I meant to do with food waste – fat trimmed off meat, fruit and vegetable peelings, leftovers that I can’t eat because everything comes in family size packs and I have only one stomach?  What do I do with cat litter and cat food pouches?  Do I leave them to rot for a fortnight in the green bin, stinking up the back street?

I can see this leading to a lot more black bags being used.  People will double- and triple-bag to keep the stink down.  How does that reduce environmental impact?  Well, I suppose it will look tidier when everything is black and shiny instead of spilling out everywhere.

It seems to me they’re going about this backwards if the environment excuse is to be believed.  You need to make some major changes elsewhere first.  We need manufacturers to use less packaging, produce smaller sizes, and do more of the controlled disposal before things hit the shelves.  We need better alternative means to remove whatever waste we can’t reduce.  You can’t suddenly decide that you won’t handle waste and expect it not to pile up somewhere else instead.

Instead of landfill, we’ll have fly tipping and rats.  That’s a great way to improve the environment.  I don’t mind the odd rat scurrying about on the railway embankment.  They’re quite cute and as rodents go are very intelligent and interesting to watch.  What I do mind is the population increasing and the disease that they (inadvertently) spread by rooting round in rotting waste.  Perhaps I could catch them in humane traps when they start spreading and take a few down to council headquarters for a visit.  I don’t want to kill them – they have as much right to be alive as anyone else – but I can see exterminators having an up-turn in business.  Rats might be nicer neighbours than some of the people a few streets over.  Perhaps if we evict the vermin and move the rats in, we’ll have a waste disposal team of the most natural kind on our doorstep.

The plan should increase recycling, apparently.  Well, I already recycle everything for which they provide the facility to do so.  Most of us around here do.  You should hear the crash of bottles and cans going into the blue bins the night before collection day.  So how does reducing the frequency of collections for the waste they don’t allow me to recycle help?  It doesn’t.  What it might do is make people use the recycling bins for general waste as well as tins, bottles, paper, card and oh, no, that’s all they let us recycle.

So thinking about it, I really have to conclude that their statement should really be simply “We need to make savings”.  They’ve had their budget cut by the government, as has everyone else, so instead of spending less money on think tanks to come up with public health disasters like this, they’re cutting the number of people that collect our bins.  What they’ve done is cut two thirds of the team so only one third is left to get round all the streets and remove all the waste.  What next?  Close two thirds of the roads on a rota basis to prevent wear and tear?

I might be over-reacting but it seems only five minutes since the ‘newsletter’ told us triumphantly that the people had not been willing to cut waste management services so they were leaving it alone.  I give it a very short time before it becomes a problem.  People are people and the majority want to have their cake and eat it (then throw the wrapper away).  I don’t create enough rubbish to complain about an overflowing bin, but my neighbours do.  My food rots, just like everyone else’s.  We’ll all be keeping our windows shut this summer.  Even if we get used to the smell of rotting rubbish, we don’t want the flies in.  I’m off to practise not breathing so that as the miasma builds up, I’ll be able to cope.

Tempting Fate?

Do you ever feel that no matter what you do, if you are relying on a certain outcome, Fate sits back and rubs its hands with glee?  You can almost here the chafing of celestial palm against celestial palm.  You would turn round and glare if you could see quite where it was coming from.

It’s that knowing that you’ve prepared a great presentation but the venue turns out not to have a projector; spending ages on hair and makeup only to be caught in a freak rain storm on an otherwise cloudless day; saying no, I don’t think I got this year’s killer cold and instantly feeling your adenoids swell…

There seems little point sometimes in trying to cover every possibility.  Fate is almost guaranteed to find some loophole.  You could decide to bear the laughter and hoist a massive rucksack full of emergency supplies and equipment over your elegant evening dress, only to have the shoulder strap snap or the zip get stuck.  Sometimes it seems that trying to pre-empt the inevitable only makes that abstract being snigger harder.

What’s got me so bothered about it?  Well, in just over two weeks, I’m going into hospital for a surgical procedure and I know that, whenever I pin my hopes on something medical, there are delays, complications, obstacles, and all the while Fate sits there saying “you dared to hope”.

I’m going so far as to write a will before I go in.  It just seems to me that if I don’t, they’ll slip and sever something vital, or I’ll react badly to the anaesthetic, or I’ll be out and on the ward and have a seizure or a heart attack.  Paranoid?  It might sound that way.  But it’s more a case of learning through experience that whatever I do to prepare, and whatever instructions I give verbally, something will happen that could not have been predicted.  There’s always the chance that if I put everything in place that I can, the whole thing will be cancelled for some freak occurrence.

Surely, by my own theory, I hear you thinking, writing a will means that even if I jumped off the cliffs at Marsden I’d end up maimed but not dead?  That’s probably true, and that’s exactly why I wouldn’t jump off the cliffs at Marsden no matter how much I wanted it all to end!  Fate would not let me get away with it.  There’s a chance that if anything goes wrong in the operating theatre that I’ll survive but in pain and on medication for the rest of my life.  Should I really write a will?  Am I not setting myself up for living torture by doing that?  Well, I can almost hear Fate sucking the air over its teeth right now.

“She’s writing a will.  That means I can’t kill her off.  But she’s now written a public article about it, so how does that affect maiming her instead?  There must be something I can do to thwart her.  I’ve never let a chance go by yet.  She’s learned not to say certain things aloud and she’s learned not even to write certain things down.  What loophole can I employ here?  There must be one!”

So in the meantime, I’ll be thinking of ways to have the least hope, the least expectation, but at the same time take the most precaution and give the most information to the people slicing and dicing me.  Fate will get me back for it somehow, I know, and I’ll be waiting…

Accidentally fashionable

I think everyone is now aware of the Philadelphia chocolate cheese product.  I’ve not heard of one person that’s tried it and didn’t like it.  Roughly 23 years ago, I remember being ridiculed for mixing Philadelphia cream cheese with chocolate spread for a Friday treat in my packed lunch for school.  So was I really a strange child?  Or was I some kind of visionary for small trends?

It’s something that’s bothered me for a couple of decades.  Not the chocolate cheese thing.  No, I mean things I do largely to buck the trends that five minutes later are all the rage.

I cut my hair boyishly short in my youth.  Granted, it didn’t look great on me, but I swam a lot and not only was it more convenient, it also flew in the face of the shoulder length perm that engulfed most girls of my age.  No sooner did I cut all my hair off (naturally blonde, down to my waist at the time) than it was all over the magazines that the thing to do was cut your hair short.  I was most chagrined.

These days my hair is back to being long and I’ll never cut it all off again.  Looking like my dad in drag does not appeal when I look back at the photos.  Still naturally blonde, although admittedly a couple of shades darker and smattered with greys (and the odd alarmingly white tungsten element appearing here and there).  I dye it bright red though, so you’d never know I’ve had greys since I was fourteen.  Well, you do now, but that doesn’t really bother me – you can’t see them and that’s what matters.

What happens when I’ve been Red for a short while?  The makers of my colour (who I’m not going to advertise because it’s MY colour dammit!) start advertising and suddenly it’s quite a popular thing to go red.  How peeved am I?  When I did it, it was unusual to see anyone else walking round with the same colour.  Last time I walked through the high street, there were half a dozen bright reds.  Ladies, a quick tip, it’s not a shade you can carry off with a spray tan – go back to the bleach bottle.  Leave the reds to those of us pale enough to be from the Village of the Damned if we tried to do your usual platinum thing.  I’m not changing my colour.  Soon enough it will be so last year and then so not the thing to do and I’ll be comfortable again.

For someone who’s spent her life on the fringe, ‘following the crowd’ was never important.  It even became the opposite of what I wanted, but every so often it seems I hit upon the next big thing before it happens, and only just before, so I get long to be me before it isn’t different anymore.  If people were copying me, I’d be really worried, but since I know no-one in their right mind would, I think it’s safe to assume I just sometimes accidentally pre-empt a trend or a product and not always by a short time. 

I was making teriyaki long before Yo Sushi was even a brainchild (although I’d given up calorific chocolate-cheese and btw, TGI use a cooked down teriyaki version made with JD for their ‘world famous’ glaze).  I was saying meh long before it became common vernacular.  I was buying my groceries online twelve years ago and laughing at the trolley-ragers.  So many things.  And you know what?  People laughed at me for each and every one.  So enjoy your chocolate-cheese – I grew out of it years ago!

Helpful does not mean preferable

I was just checking my Amazon profile and I noticed some people voting my reviews as unhelpful, although they give a completely honest impression of the books as I found them.  Now, the only reason that should be voted unhelpful is surely that it doesn’t meet with the opinion of another reader.

Do you like being given injections of mutated virii by your doctor?  No.  Do you think it’s unhelpful that you were given those injections?  No.  So why are you still confused about helpful versus agreeable?

If you like something on facebook, you click like.  If you don’t like it, you either ignore or make a comment, but you don’t consider it unhelpful.

So why is a book review different?  Is it because Amazon doesn’t have a like button on reviews?  Are you the publisher and think someone not really enjoying the book might damage your profit margins?  The point of voting something helpful or not is to help other people decide whether a review is relevant and might help, there’s that word again, help, others decide whether they might or might not enjoy the product.

 I see some reviews that I would rate as unhelpful.  A review is not a synopsis and nor is it a critique.  Keep those types of ‘reviews’ for you literary circles please.  A review is for the personal, general perspective; a critique is an analysis.  Where does Amazon say ‘Create your own critique’?  A review should tell me whether something is good and help me make an informed decision about buying.  It shouldn’t save me reading the book at all by telling me in brief what the story is anyway.

Amazon has a minimum word count for a review, otherwise it might be better to write ‘liked it’ or ‘didn’t like it’ and leave it at that.  But people are annoying and want to know why.  So I say why and if they don’t agree with what I say, they tell me I’m unhelpful.  The next time my doctor tells me something I don’t want to hear, I might tell him he’s being unhelpful, just to keep with the times.

The other reviews I find unhelpful are for consumables where anyone with an ounce of sense would not have managed to blow them up, smash them or in some other way destroy them within five minutes of ownership.  Please, if you thought the product was indestructible, you probably shouldn’t be allowed to play with anything connected to any source of electrical power anyway.  Tell me what the good points and bad points are in comparison to other products or even to a first time buyer, but don’t tell me that you dropped it once and it was never the same again.  That’s why companies offer you warranties for their product, not for your action with said product.

Go ahead.  Comment and tell me I’m being unhelpful because you didn’t want to hear that I disagree.  I might add a note to my reviews from now on explaining the difference between what is helpful and what is preferable.