I went to Stoke Mandeville yesterday  ( thank you Dani for your help ) and was there for quite a long time. I can tell that my consultant there ( who as an inmate you see ever so briefly once a week or fortnight ) seems to have a curiosity ( can’t think of another word for it ) about me. I left there 2 years ago and really hardly saw him when I was there, yet he remembers all kinds of details about me that really he should have forgotten – maybe he reads this blog?! But I doubt it.

Anyway, they did standard X Ray’s and an ultrasound of my bladder, discussed my distressing spasms at length, talked about my bladder a lot too, and then it got more interesting  when I prompted a discussion on a possible straightening of my spine ( which in the haste to save my life in Toulon they cobbled together very badly ).  So they can now revisit it and re-operate to stack the vertabrae on top of one another in a straight’ish line. That ought make me more upright and less twisted than I am now – I hope.

There is a slight risk that I end up more paralysed than I am now but I’m cool with taking a chance.

Also they found the very large swelling to my sacral ( tailbone/ coccyx ) area quite alarming and want to do an MRI scan urgently to rule out a tumour. That eventuality didn’t even cause me a flicker of concern either.

On the assumption that I don’t die soon of the above I’ve decided to make a dramatic change in the direction of my life, having realised one or two things.

Some things are unrealistic and not achieveable, no matter how hard I wish for them.

Some things are definitely achieveable, but having tried very hard to make them happen for what seems like an eternity, I now realise are beyond my control and in the hands of others. Those things I can let go of and say goodbye to.

I spend way, way too much time being very unhappy / suicidal even, but there is an alternative approach – not one I had imagined taking a year ago (or even a month ago )  – but it would I think set me free, and give me a another bite of the cherry.

First things first though – medical investigations to my insides/ tumour search / major spine surgery / time in hospital recovering.

Oh and I need a haircut as well.

Thanks to Steve and Shelley ( mostly Steve ) for his words, and thanks always to Clair,  and to Pia.

I just want to have a day which I could now described as ‘good’, the definition being where nothing has distressed me.

Today began with legs and trunk that spasmed for 5 hours.  I did some work stuff on line through a fair bit of that, though it’s very, very hard to concentrate.

The spasms lessened for about 2 hours, which I had to spend ‘ in the bathroom ‘ – the obligatory unpleasant stuff.

The spasms then started again at about 3pm. It’s is 10,45 and they are continuing to dominate my world and break my spirit.

I thought that the antibiotics might have stopped them but really they have made no difference at all.

It’s probably been no worse than lots of other recent  ( last 7 months ) days really, but I’m worn down psychologically.

Tomorrow I go back to Stoke Mandeville for tests. I don’t have much faith that there’ll be any quick fix to this situation.

I asked a few of those questions to another ‘educated’ 15 year old….

See below:

Katmandhu – capital city of?

Is that a real place?

Who was imprisoned on Robben island?

Robin Hood?

Where’s Mount Everest ?

Switzerland?

Which country was Nelson Mandela the leader of?

Jamaica?

I do wonder what they do in school all day.

And I have yet another UTI.

Well it made for very funny reading! It took me a long time to live down the following when I was 18…… T.P. question: ‘To whom would you give a Heimlich manoeuvre?’ Being even dumber than Dumb & Dumber, my boyfriend at the time took pity on me and discreetly whispered the answer, but obviously a little too discreetly as I jumped up in glee at finally being able to give an answer to a question and shouted out ‘Simon Cherkin!!!’ ???

The girl in the grey jacket is Amber, and on camera is Kev.

The thing is ( if you know a bit about skiing ) that ‘ normally ‘ it’s all about sensations – the feel of the skis against the snow, the angle of your body relative to the slope, the distribution of your weight on your skis according to the type of snow and the length of your skis … I have none of that to go on – as in none at all – I can hear the noise the skis are making and I can tell if I’m sliding rather than cutting into the snow ( carving ) only by the direction I have just ended up going in… So the sensory deprivation is unreal.

True to form, I finished on a high. All day today I skied everything in control and with a fair bit of speed thrown in. Courmayeur in Italy has quite a lot of steep and narrow stuff ( the sort of stuff that very recently would have created havoc in my sitski world ) but today nothing fazed me and l linked my turns smoothly and confidently.

The best part was that I actually enjoyed it, as in didn’t mind that much that I had to ski sat down; and can see the prospect of major progression next year, whereupon I should be flying.

JJ declared himself proud of me – and rather than interpret the remark as bullshit/flattery, which is my default reaction, I actually believed him … and felt pretty pleased with myself too.

Sitskiing has to be the most frustrating sport in the whole world. Just when you think you’ve cracked it, everything seems to change and you go back days …falling, spinning around, sliding down backwards and ending up upside down and stuck fast ( and helpless). The technique that worked well yesterday was next to useless today. For hours I was at a loss as to what to try and wishing I’d never bloody started in the first place.

By the end of the day I had recovered a bit of  posture and control,  by doing completely different things to all of the other days.

Tomorrow is the last day. On the other trips the last day has gone well ‘ ish , giving me enough urge to want to come back. I’m hoping that’s going to be the case this time too.

The kids are happy though. Lily bumped into a friend  and they’re now hanging around on the film set of a Hollywood movie that happens to be being shot here.

The closest I got to that as a kid was once appearing on the Welsh local news having been taken for one of Cardiff’s homeless youths.

Which country is Kathmandu the capital city of?
Amber: Wales ?

Who was imprisoned on Robben island? Amber: Robin Hood?

Where’s Mount Everest ?
Amber: France? No, Italy !

Which country was Nelson Mandela the leader of?
Lily: America?
Amber: India?

Which bird has the largest Wingspan?
Lily: The eagle?
Me: no.
Lily: The Vulcan?
Amber: A dragonfly?
Me: no, the albatross.
Lily: Never heard of it.

Which bird is the Fastest runner?
Amber: Flamingo?

Who came to visit Jesus in the manger? Amber: I know this! Mary?
Amber: God?

Amber: The Messiah ?

Why did Moses end up floating down the river?
Dani: Because of King Harold!
Me: no, King Herod darling..

Dani: no, it was definitely Harold..

( and I’ve been told to admit to saying that Copenhagen was in Holland .. )

More changes in the type of snow and more changes to how I get down it, technically.

Today I hardly had to touch with my pole-skis and I’d spin round, at first way  too much and then crash. I got the hang of it though and it went pretty well.

Thanks so much to Kev Young this week. His thighs have been burning a fair bit I think as he’s uncomplainingly pushed me here and there on flat bits and uphills, where I am pretty much stuck.

Cheers Boyo.

Russ