I met a man today, a friend of a friend, who, through business, had quite a lot of contact with Micheal Schumacher, legendary F1 champion and now in a PVS – persistent vegetative state.
I’m assuming he has it on good authority when he told me that MS has Locked in Syndrome – that his mind is fully active and perhaps fully functional, but that all connections between his brain and his bodily control are lost. He is locked in, an active mind imprisoned in a skull, possibly deprived of sight and hearing too, not knowing or understanding where he is, how he got there, and without any hope of ever knowing. Perhaps he can receive visual signals and/ or the processing of sound, so has some inkling ( or full awareness ) of where and how he is, but they don’t know. Without any means of communication, he can’t tell them.

When he retired from racing, he always had to get his adrenaline fix, and took up motorcycle racing and sky diving – they could guage his frustration ( at a given time ) at not being able to race F1, by the frequency that he jumped out of planes.

You might say it was inevitable that he’d end up dead. I think it very certain that he’d rather be dead than be how he is now. He’ll be kept alive, by machines, until he somehow expires of some other complication,there is a miracle cure or the machines are switched off. He himself has no say, despite probably everyone knowing what his choice would be.

He won’t look like MS any more – his athletic body will have wasted away, and may now be twisted. Without tone, his face won’t be the same, and his hair may have fallen out. He may be unrecognisable as who he was.

I truly hope to God that he is not fully conscious of his situation, and is not living inside his prison in abject eternal despair.

The spasms didn’t lessen at night, last night, they bloody carried on all the night through and then all day today.
I’m now in pain, pain that seems to emanate from somewhere in my spine, I think the degenerated joint, one third of the way up my back. Each time I feel the pain, my legs jerk, so I think that I’ve probably been in pain for ages without feeling it and now it’s bad enough to feel it, despite it coming from an area that is below my spinal cord break.
The second operation that I have planned, a week after the first on August 23rd, should address the painful joint, shoring it up within an artificial cage around my spine.
Until then, I expect this new addition to my problems to continue.

My buddy, Rob, just emailed to say that he swallowed a wasp today, though not on purpose, and it stang him on the way down, that being its’ last act.

In some countries they catch mosquitos by the swarm and then compress them into mosquitos burgers, after adding a few herbs.
Apparently highly nutritious..

I spasm when I move, I spasm when I cough – I spasm when I do nothing at all. Any situation which involves my spine moving gives rise to jerking of both legs.

It does seem now to be best ( least spasm’y ) when I’m in bed, which not long ago was the other way around.

I can’t spend all my time in bed, however, though I know that that’s often an outcome for the likes of me, and also for the depressed. Given that it’s very hard not to feel very pissed off most of the time, it is an option, though I can’t see myself ending up that way.

Quite a lot of my mates are in France, or have been, to watch stages of the Tour ( de France ). I would have been there too, but for obvious reasons find myself not invited ( quite sensibly ) though it’s still a bit tough when I think about that, so I try not to.

I had spells of absolute sadness today, but I have to press on and get past, removing thoughts of self termination.
It’s so often minute by minute, rather than one day at a time.

I’ve been warned ( by my psychiatrist ) of the likelihood of severe depression during my forthcoming 5-6 weeks in hospital. I’ll obviously have to focus on the likely improvement that surgery will induce…. but what if it doesn’t transpire that it helps me very much? That wouldn’t be good.

I had a glass of red wine earlier. It was the last part of the bottle. As I drank the last mouthful, I felt something in my mouth, that I presumed was sediment in the wine. When I plucked the thing from my mouth, it was a large dead fly.

I showed my two daughters – Lily recoiled in disgust. Amber said ‘ if you give me £50 I’ll eat it ‘
I refused to go any higher than £20 so it didn’t happen.

Amazing how 2 people with more or less the same genes can be so different, isn’t it?

Bloody spasms have been spectacularly bad today – I seem to get different spasms now – both legs jerk so hard that my knees and feet lift up and it tips me forward. They happen about once a minute.
I don’t know what these different spasms signify, but for sure it’ll be something.

I’ve had a stressful ( as in stressful beyond my normal stress ) few days. I’m tired from not sleeping and I’m run down.

My first operation may now be on August 23rd ( the second will happen about a week later ) and then probably in hospital til October.
This will mean my new ‘ apprentices’ at work won’t get my very detailed help and input, which is a shame for them for sure.
I don’t like letting people down, but it’s how my life is now.

Today has not been a good day, tho I did see a friend (Amber ) and managed a hair cut. It seems so little to achieve in a whole day, but I’m looking for positives!

Mate,
Can’t tell you how brilliant it was for you to be at ours on Friday. No matter whether people were successful in business, Olympic idiots or idiots I went to school with, or my ‘proper’ mates – unfortunately you’re in that category although I haven’t exhibited it enough recently – everyone behaved as badly and irresponsibly as each other. I can’t imagine how difficult/frustrating/unenjoyable those situations are but hopefully you enjoyed everyone being so busy being pissed to pay any attention to anything.

Rest easy big guy,
J

Today the bodily jerks that have continued from waking til now are most certainly getting me down.
I just want them to stop. I have an important meeting tomorrow that I must be clear headed for, and at this rate the torment will prevent me thinking straight.

I hope I sleep, I really do.

My psychiatrist is a lovely guy.
He listens carefully and helps me to make sense of my thoughts, and suggests ways to address the concurrent issues that I’m facing.
I sense that he genuinely feels my pain and sometimes my despair. That does help too.

We went to see Cress in her amateur dram production of Abandonement.
I’ve not seen an AmDram production before, I don’t think, so didn’t know what to expect. How would you even begin to know whether a friend is a talented actress?
Or what the other actors would be like?

I was amazed by how good they all were.

Maybe the West End calls?

I don’t think there are many SCI actors, so I won’t be thinking of giving it a go.

After the play, and just a short push from Dani, was the party that I was talking about and ( sadly ) dreading.

To my relief when we got there, no one would answer the door, so it was definitely a case of ‘ phew, I have an excuse not to go ‘.
Dani persisted, and we did get in a few minutes later, me being confronted by quite a few people standing up and spread around, there being a step and there being grass, and there being a dance floor in a part of the garden ( yes, a big garden )
I sort of looked on and focussed on the things that I couldn’t do, especially not going anywhere near the dance floor.

James and Bev had pushed the boat out for sure ( no pun intended, James having 2 Olympic gold medals for rowing )
Two other gold medallists were there two, one more recognisable than the other, and a fair sprinkling of very tall blokes, all former oarsmen. There was one very small fella, also an Olympic gold medalist, and obviously a Cox.. him crying on the podium with the Searle brothers towering over him in 1992, in Barcelona, is still fresh in my mind.
There wasn’t much difference in height between him and I, me being sat down.

I did know a lot of the people there, which was good, though I am still embarrassed about the presence of the wheelchair that I am always attached to, so I’m not exactly outgoing.

After an hour or so, a lovely lady called Rachel proposed I ‘ dance ‘ with her, which I resisted, as it’s not quite the same dancing sat down.
Rachel didn’t take no for an answer and after a bit just pushed me over to the floor against my will, and started pulling me around.
It was about 2 hours later that left that floor, during which I’d been swung around by the hand by pretty much everyone, and run over most people’s feet.

The music was great and although I felt different, of course, I definitely didn’t feel excluded. And I met some lovely people as well as seeing some that I hadn’t seen for ages.

Thanks to everyone there for making me feel a lot better about myself, and especially to Rachel for giving me no choice.

Last night my buddy, Marky P, and my school friend, Lisa J ( whom I’ve not seen since my 18th bday Toga party… ) took me / came with me to see Michael Foale speak.

He’s a British astronaut and has been in Space 6 times.
What a lovely guy he seemed, too.
I suppose when they pick people to go to Space to live and work with other astronauts in close confinement for long periods, they have to choose easy going types. Heated arguments in space might not be the best thing.
He did say that his wife said he’d come back from Space ‘ a nicer person’ – especially after he was there for the first crash between 2 ‘ Space ships’ ( well one was the Mir space station ) and you can imagine how scary that was.
He almost certainly wondered whether they’d all die, or die later after being trapped in Space until they ran out of supplies. After surviving that, I think it would make you relaxed about most things, once back on Earth.

There was another speaker who talked about the effect of Space on vision and the eye.
Given my profession, that was pretty interesting too. Basically the build up of fluid in the brain would most likely make you increasingly long sighted ( you’d find it harder and harder to read ) the longer you were in Space. She didn’t say whether they send up increasingly stronger pairs of reading glasses for the astronauts…but that would be the obvious thing to do. Perhaps the next rocket launch ought be sponsored by Specsavers?
It was funny to see what happens to your hair in Space too – the weightlessness means it grows straight up, so everyone looks like Bart Simpson after a bit.

I saw my Yukon 1000 partner yesterday – crazy bugger has just finished a 2700 mile unsupported mountain bike race.
The idiot wants to do a 5,000 mile race next year. Not everyone’s cup of tea, but Rob is used to long periods between showers.
Congrats to him on his race finish, and congrats to Pia for getting a 1st in her degree ( not just a pretty face after all…)

Great to see Charlie P too.

The picture is of the astronaut and myself. I wonder who will be the first paralysed person in space? I could move around a lot easier up there.
Maybe that’s the answer?

So I’m awake at 4.30 and I’m thinking about a party that we’re invited to in a few days.

This is what it’s like at a party in a wheelchair –

You can’t ‘ circulate’ – any movement, in any direction risks you bumping into somebody’s ankles, or somebody stepping back, not knowing you’re suddenly behind them, and tripping over you.
So you can’t move.

Most houses seem to have a step, or steps between rooms, so you stay in the room that you’re put in when you get there.

If you do move then you have to try to politely interrupt people’s conversations to get past, at which point everyone is saying sorry to you.

You don’t really know where to look, as if you do catch someone’s eye, it sort of obliges them to talk to you, when perhaps they’d rather not.

If you don’t know someone, it’s very unlikely that you’ll strike up a conversation with them, due to the drastic height difference.

If they do come and talk to you, then you hope that they’ll sit down so that they can hear you, and the relationship is more equal.

If they do sit down, then you’re thinking ‘ are they now trapped here, feeling unable to escape?’

Going to the toilet is always awkward, as no one has a loo on the ground floor that’s big enough to get into, and then close the door, and definitely not big enough to spin around, reopen the door and come out again.

Basically, you feel like you just don’t fit, so best avoided.

Two days ago I finished a course of double dose antibiotics for a UTI. It seemed to have successfully cleansed me of infection.

Tonight I once more have a bladder infection. It seems that I just cannot be rid of them any more, and explains the violent spasms that I’ve yet again endured this evening, that are impossible to ignore.

Tomorrow it’ll no doubt be worse, limiting what I can do.