Monthly Archives: July 2016


Today whilst blowing up the tyre of my trike chair, obviously whilst in my normal chair ( I can’t do it otherwise ) I lost track of where I was, tipped back off a kerb, crashed back against a roughly finished concrete wall – tearing lots of skin off my hand and arm – and finished upside down in an area of soil.

I don’t care about the physical injuries, the cuts will mend before too long, but the feeling of absolute helplessness is what stays with me. Had help not been at hand, in the form of Dani, Lily and Amber on this occasion, I’d never have been able to help myself. Just being on an incline, my head lower than my body, having no abdominal muscle use, and nothing to hold onto to pull on, means I cannot move at all. I’d have lain there forever.
I know that that eventuality is unlikely, in this crowded world, but that get-out doesn’t help – the knowledge of my own vulnerability is so crushing to me when so starkly apparent.

Wrong verdict?

I finally finished that book – the one about the first murder on a British railway.

The man that was convicted, and then hanged, was a German working as a tailor in Victorian London.

The discomfort that existed in the city, after his conviction, was huge. He was a man of previously excellent character who was at the mercy of forces beyond his control ( the press and the judicial system of the age ) He’d been found guilty by the press long before he appeared in court, and whilst there was condemned by the testimonies of a few people with ulterior motives ( financial in the main but also prejudice )

After the sentence was given – death by hanging – the very press that had sought to see him hang, switched sides, having realised their quite possible error.

The court process did not oblige the Crown to release information that they held which could have shown the accused in a better light ( and saved him ) He was not allowed, either, to give any evidence at all in his own defence during the trial, so was totally at the mercy of a few possibly unscrupulous characters, and judged on their dubious ‘ evidence ‘.

Fifty thousand people gathered to see him hang, many, many of them unconvinced that justice was being done. No appeal was allowed despite many misgivings that came to light after the verdict. To have faced the gallows before a crowd that huge, knowing that he was innocent, must have been mental torture for him, his only solace being his belief that God knew the truth and would let him into Paradise.

Who knows how many miscarriages of justice there were back then, not rectifiable after a death sentence – one of the reasons why corporal punishment was halted ( though in Britain not until 99 years later, in 1964 ) At least now people live to get a second chance.

Whilst not anywhere near as terminal, I recall being involved in a dismissal of someone from their job, for theft. The person was dismissed on the seemingly very credible statement of another ( trusted ) person. What possible motive can there have been for that person to have lied? A couple of years later, that trusted individual was caught on camera stealing, and turned out to have been stealing for a significant time, and in large amounts. The motive for her to have incriminated the other person was to distract attention from herself – she had been the culprit in that crime too.
Being wise after the event was too late. The person dismissed two years earlier never had justice, and I really don’t know how that went on to affect that innocent victim.

What I did come to realise though is that those protesting innocence vehemently, really ought be taken seriously, as all is far from necessarily as it seems. People with no obvious motive can distort the truth very easily for their own gain, and do so no matter how condemning for another.


I played crazy golf 2 days ago – with Dani and the girls, and 2 of their friends.
I wasn’t a golfer pre injury, I’d had a go 3 times but it just didn’t do it for me. If something wasn’t physically tiring, then I just couldn’t get excited about it.
And it took so, so, so long….

Anyway, having no balance, and from a chair, I had to play one handed and with a half sized club, and half the time from from a very odd angle, not being able to position the chair in the best place.

It was a surprise to me that I won, then, and then won again when we played again.
I put it down to the poor golfing quality of the opposition ( sorry, girls ) rather than any skill on my behalf.

When I try to analyse my own judgemental conclusions, I am fully aware that I was never really happy with any physical performance of mine, except for the one – winning the 1000 mile canoe race, and for that only my performance over the last 3 days, not the first 3.
If I was never satisfied before, when very physically able, it’s very unlikely that I will be now, isn’t it, now that I’m 10% as able?

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.

Extra problems.

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!

A message.

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,


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.