Sunday, December 8


I'm coming up to some big, huge, massive changes in my life, in the new year. It's exciting and terrifying and wonderful and without publicly going into further detail, I would very much appreciate any good thoughts/prayers/wishes that anybody can spare.

I'm also rather crossly resitting my OU module as they spectacularly bollocksed up some critical admin-related stuff. Alas the aforementioned life change may really screw this up a lot, which is a shame as I should have safely completed the module in September!

My impairment and associated medical stuff has settled. More than settled, really - a few years of genuinely good care has undone almost all the harm that the abusive nursing home did, almost all of which was assumed to be irreversible progression at the time. As such I can reasonably hope/believe that the plateau I've occupied for the last couple of years has a very good chance of being permanent, as long as I do not again experience severe neglect and emotional abuse. Which obviously, I've no intention of allowing to happen!

Friday, October 11

Still here.

I continue to exist. I'll shortly be archiving most, maybe all of the previous posts on this blog, in order that my murky melodramatic adolescent past not stalk me into middle age. Anybody still reading?! Hope all is well in the world.

Thursday, August 12

For the record...

I'm still here! I've moved to Hulme, finally got a permanent hoist system installed and have a lovely girlfriend.

My impairment is still progressing and has thrown up some nasties recently, but all in all, life is good.

I could really do with some questions to answer or something, if anybody actually reads this, tell me what to write next! What do you want to know?

Bye for now (and I promise it won't be as long next time!)


Monday, June 22

A Year

I got bored of blogging, about... well, exactly one year ago today. I was stuck in a nursing home, desperately unhappy with no prospect of getting out in the forseeable future, no nearby friends, no privacy, dignity, or independance.

I always said I'd rather die than end up in a nursing home.

When it came down to it, I couldn't do anything about either. There are no words for how horrific it is to know that you've no choice at all in the matter - a treatment more regularly doled out to those convicted of some horrible crime.

So, what about now?

I'm 23, I live in Hulme with my lovely housemate ScaryCyclist and three cats.

I use an electric wheelchair because I have a severe, progressive disability caused by a fairly rare genetic condition. Technically I was born with it but the first time it would have been even remotely possible for anyone but a major expert to spot it, I was 12. As it is it wasn't spotted until I was 20 - something of a shame as a lot of pain, expense and heartache could have been saved if some appropriately trained person had spotted it.

I also have a tube for getting liquids into me and another one for getting them out again.

I'm getting more and more technology dependant and am occasionally startled by the realisation that mostly I don't really care any more. Not that I don't care about me, but I don't think there's anything my body could throw at me now that'd really surprise me.

I keep trying to finish my degree and failing miserably. This is a source of some distress and self-disgust and I really need to get things moving and get it done. Amongst my delight at Muso Sister's imminent qualification as a secondary school music teacher, via Cardiff Uni and Homerton College Cambridge, is real anger with myself for not managing so much as an undergraduate degree in the time that my two-years-younger sibling has taken to acquire a BMus and a PGCE. I hate myself for this, in full awareness that hating oneself is unlikely to be very productive.

I need to overhaul my blog, its template, links and the rest so I should probably stop wittering now and get on with it.

To conclude: have some extraordinarily beautiful slugs.

Saturday, June 21

Whales again.

Okay, look. If you want to know how big the heart of any given whale is, you really need to do better Google searches than 'whale heart'. Pick a species, for starters. Better yet, go to a library and find a marine biology book. You've got much better chances of turning up actual fact that way. Honestly.

It took me about five seconds to find this extremely informative (if slightly commercial!) page listing the vital statistics of a pretty comprehensive selection of cetaceans. Go there instead. And do your homework better 'cos I'm not doing it for you next time.

I've had a very cross couple of weeks 'cos a measly piece of welding on the footplate of my powerchair broke, rendering me - er - legless. Effectively, anyway. So I'm back in the manual chair, which is immensely frustrating: there are nowhere [i]near[/i] enough pairs of hands here to enable decent human-assisted mobility. Should be fixed soon, but it's making the days feel very long indeed. Particularly as Nurse With Cute Puppy (NWCP) is away on holiday, rendering Keyworker Nurse (KN) hopelessly busy and therefore unable to do much keyworkering. I like KN very much but I get very angry sometimes because he wields so much power to improve (or wreck) my quality of life and he doesn't really seem to appreciate how important that makes him in my life.

I watched Turkey effect a pretty spectacular last-minute win over Croatia last night, and now I'm watching Russia do something similar to the Dutch national team. League football always seems a bit pointless but the international stuff kills time reasonably well, in the absence of anything better to watch. Of which speaking, tonight's Doctor Who episode was a real treat. Clearly another second unit production - presumably they filmed this episode and the previous simultaneously to fit the schedule in, as there's almost no overlap of the main cast between the two - but it wasn't half a goodie, although I'm not sure they'll ever top last year's second unit episode, Blink.

I should be more mobile soon - even with a poorly powerchair, as my long-awaited adapted van is soon on the way. I'm not even going to try to describe how much I'm looking forward to it.

Friday, June 6

Hello! Long time...

Well then. It's been a while. I be started university, landed myself in hospital, left university (well, suspended study), and got myself stuck in a nursing home.

Needless to say, I don't like it very much. A few of the staff are brilliant, most are mediocre, and a few absolutely dreadful. I am constantly bored and frustrated, deprived of contact with the outside world and with my peer group, offered no meaningful activity and precious little social interaction. I read books, surf the Internet and listen to music, and try to keep existing and avoid the bullying staff in between visits from friends and family.

It would be so easy for them to improve conditions for the residents here, young and old alike. Staff retreat to a room with a closed door in their break time, residents are left slumped in chairs, in front of the TV if they're lucky but just as likely to be left staring at a wall or out of a window with a view into nothing. Books, magazines and is puzzles exist but are never offered. I've never seen a member of care staff engage a resident in any meaningful activity, the physiotherapist lining people up to paint large terracotta pots in bright primary colours once a fortnight currently being the single group activity happening here. Residents with severe, multiple impairments do not join in.

We did baking, once. Four of us, and one of the cooks came in on his day off. It was brilliant, animated and interesting even only for a few hours. The cake I made wasn't half bad either. Despite our enthusiasm, it seems to have been a one-off. That was weeks ago now.

Eventually, I should get out of here. Nobody seems to want to pay for 36 person-hours of care needed in each 24. Funny that. But that's what I need to live independently, so that's what I'm going to get. It's going to take a long time and a lot of hard work, a lot of fighting to get that. But I will. I cannot spend the rest of my life here.

Sunday, January 7

Annoying news, bad news and sad news.

I'd like to wish you lot a happy New Year, Christmas, Hannukah, Winter Solstice and anything else that happened in the last month or so that passed beneath my radar.


Girl with a one-track mind got rather a lot of media attention, recently - essentially, for having lots of sex and blogging anonymously about it. And then for being 'outed', horribly and intrusively, by someone who thought it might make a story. That, in itself, is unspeakable.

But then, she reveals one of the emails that Nicholas Hellen, the Acting News Editor of the Sunday Times (hopefully not for much longer) sent her. How low can you go? Threats. Intimidation. Bullying, in short. 'Abby' is clearly a strong woman with plenty of support and I'm sure this little post will matter not one jot to her, but I saw the bandwagon and decided to crawl onto it anyway. I wish her all the very best.


I've got a whole lot more rage at the international press for their coverage of the Ashley X case this week - but I've pretty much said my piece over at Ouch so instead of repeating myself comprehensively I'll just point you there instead. Cutting out a little girl's uterus, and ovaries, and breasts "in case they cause her discomfort later on" is, at the very least, ridiculous. And obscene. And a whole load more words besides.


Lastly and on a sadder note, one of my littlest blog-friends died this week. Lance was six-and-three-quarters and had Menke's Syndrome. He was a lovely little chap and his parents and baby sister clearly absolutely adored him, and my thoughts are with them now.


Edited later, to add:
fairsCaPe, an ace poet and mum-blogger to a son with several profound impairments, has cancer and is quite poorly at the moment. She has my strength and good wishes and if anyone's got any spare they might like to lend her theirs, too.