And I have to thank the quite amazing Lizzy for arranging and then taking me to Rome for 5 days.
It was without doubt the best thing I’ve done since my injury.
It proved that there is … ( despite me often questioning it ) a life after paralysis.

❤️

I went to a gig last night. It was Kasabian in Brixton. They were fantastic! I’ve seen them a few times before, but last night they were so much better then previously.
They have changed their lead singer, after the original one was arrested and charged for assaulting his girlfriend.
The band fired him.
His girlfriend married him… One of their big hits is ‘ I’m in Love with a Psycho’ … and Im wondering if they played that whist she walked down the aisle?

I’m sure he’s a changed man .. but the band is definitely better off. The new fella is seriously charismatic on stage and is a crowd pleaser… which is what you want when you see a band – you want to hear them play your favourite songs ( their hits ) and that’s exactly what they did.

5000 people and no masks. I’m away at the side on a platform… but there is bound to be Covid all over the place.

You get all sorts on the Spaz platform. Most are in wheelchairs, but not everyone. There was a girl arrived a couple of songs late that came with her very large breasted friend as her looker afterer.
A few songs later the band had a bit of a Lazer light show going on and there was a lot of flashing. The girl in the chair started to look a bit distressed and put her hand over her face… and I guessed she was probably epileptic. With that her friend suddenly grabbed her seated friend’s face and just stuck it between her ample breasts, to shield her from the lights… and released her once they’d stopped. She did then explain that her friend was indeed epileptic.

To be honest.. … I considered faking an epileptic fit myself after that ! 😅

As loads of gigs got postponed and rescheduled because of the pandemic… I’ve got another one tonight in North London. I’ve got a personal rule – I don’t cancel these commitments – it would be so easy to find an excuse to not do stuff ( because NOTHING is straightforward for me ) .. so I am going to go ( even though I don’t really want to ) but always always I’m glad I made the effort.

But aside from leaving a wet trail between Brentford and Oxford, my train journey ( where the assistance actually worked perfectly- because now there’s an app for that!! ) got me to see my daughter Lily, and also my parents… who very helpfully delivered the bike that I’d sourced for Lily. Well when you study in Oxford I actually think it might be COMPULSORY to ride a bicycle?! So now she can.
Of course there’s a part of me that’s uncomfortable about cycling ( since that’s how I’m in a wheelchair .. ) but aside from that, it makes a lot of sense.

Lily is definitely thriving in Oxford, and was as charming and as beautiful as ever.

My life is governed by piss and shit. Everyone’s life ( in the ‘ civilised’ world ) is governed by the excretion and disposal of those two.

When you are normal, you rarely notice it. You can go to a loo, do what you have to, flush and leave. Job done. Job done 5/6/7/8 times a day, possibly more, but not often is it complicated.
When something goes wrong though, suddenly it’s not background anymore, it becomes very much your focus. Maybe you’re on a train and you need a wee. The toilet is out of action and the train isn’t stopping for an hour. Suddenly all you can think about is how you are going to manage that situation, and it isn’t pleasant. Maybe you’re in a theatre and in the middle of a row and suddenly you feel like you are going to shit yourself. You either hold on or you try to make your way past 10 people in the middle of a performance, causing a lot of disturbance, disruption and embarrassment for yourself.
By and large though you have complete control, other than in early childhood, of how you deal with it. You may have the odd close call, but it rarely leads to calamity.

With spinal cord injury that all changes. All of a sudden you have lost all control of both bladder and bowel. To compound that hugely, you can’t walk or even stand up. So you’re doubly incontinent and unable to run to a toilet. What’s more, you can’t actually tell when you need to go.
It’s why most people that are spinal cord injured and in wheelchairs don’t go out much. The ever present risk of ‘ accident’ and the subsequent inability to deal with the consequences ( while out ) is just too much to deal with. You might have to not eat or drink anything whilst out to minimise the risk of setting your system in motion, so to speak.

For me now it’s made more easy to cope by having a stoma and a suprapubic catheter. I have valves, you could say, that I can seal. But solid and liquid still want to come out. Trying to artificially prevent it from leaving my body just makes me spasm, my legs trembling and jerking. I have a tube sticking out of me and a bag stuck to me. Even those 2 aren’t a guaranteed seal though. Both can rupture or just leak. I spend a lot of time and effort just trying to make sure I have sufficient supplies of catheters/ bags/ sprays/ sleeves/ tubes. If I’m not onto it, it’s very much a problem, and the supply chain lets me down regularly. It’s not enough to send emails and make phone calls, because still human error ensures that I have regular stressful times where I am dangerously close to running out of what I need.
In the pandemic, people panicked at the prospect of not having toilet paper. There was a genuine fear of not having enough. In the event that you ran out there are a thousand ways of managing without it. There’s newspaper, tissues, bidets, leaves, cloths you can wash etc etc etc. Not many people were really in danger of having drastic toilet disasters, yet still there was widespread panic and headlines in the news.

All spinally cord injured people live in that world of panic all of the time, but for us lot it’s real, with the very real accident waiting to happen scenario there constantly. It’s a thousand times worse than being down to your last multi pack of Andrex.

Currently I’m on a train to Oxford. The leg back that my Pee drains into, is leaking. A week ago I made a pleading phone call to the supplier, for more. Two weeks ago I was online to my doctors surgery website ordering a supply. This morning this last bag sprang a leak. I’ve used duck tape to try to stop it, but it hasn’t worked. I’m slow dripping therefore. I don’t think I smell, and it’ll probably be dripping onto the ground/ floor rather than on me, but as I can’t feel whether my feet are wet, nor even reach down to them to feel with my hand, I just don’t know. I phoned again today. They said they didn’t understand why they hadn’t been sent…. two hours later I got a call ( when I was on the station platform ) to say that a taxi was rushing to my address with a supply. I said I had gone out. I could hear the surprise in his voice – ‘ you’ve gone out with a leaking bag?’ Normal people wouldn’t go out if they were liable to leak wee or poo, would they, and this guy on the phone was able bodied… but my life is like this all the time, I wanted to explain. I didn’t, I just said to tell the driver to make SURE he left the supply somewhere I can find them.

These days doorstep parcel theft is rife, with people selling the proceeds down the pub.
So if you see a fella in your local boozer trying to shift a pack of 750ml short tube leg bags, you know where they came from.

In no particular order then, since I last posted anything.. I have been to the theatre to see Blithe Spirit ( with Jennifer Saunders in it ) – really, really funny.
I’ve seen a play called The Beauty Queen of Lenane – and that was way up on my list of Best Theatre Nights, I’ve seen James Bond ( well who hasn’t?! ), I’ve seen my parents and quite a few friends. I’ve been caught in the rain whilst out with my Triride, and had to wheel through ( almost ) ponds on the roads – not safe… I’ve almost been crashed into again by an old lady (that almost certainly should’ve been wearing driving glasses but wasn’t), I’ve been stranded on the wrong side of the river after a motorcycle ploughed through 3 pedestrians just before I got to that part of the bridge, I’ve had a few big nights out, I’ve had dinner cooked by Chris Cats, I’ve given up trying to cook ( because I can’t twist my torso and tbh it’s quite risky with only being therefore able to use one hand-and gone for plant based Mindful Chef deliveries, I’ve bought a Wii ( but hardly used it ), I’ve explored London more, I’ve actually watched my TV a fair bit, and started ( if not finished ) 3 books. And I’ve seen Brentford play against Chelsea and also Leicester ( and they should have won – but didn’t- both games )

I seem to have been busy then… which of course is key for me.

I also decided to do far less cranking and far more strength exercises… if you say want to look younger/ better then you can either work on losing excess, or turning it into muscle instead ( and I’ve switched to the latter .. which I also think is better for my headspace ). The danger is that you injure yourself and then lose arm(s) function… which when you only have your arms… is risky. So I’m very mindful!

‘A typical microwave oven uses more electricity keeping its digital clock on standby than it does heating food.’

Facts generously provided byThe QI Elves

I’m just leaving north London.

I’d been invited by my lovely friend Mark C to a talk by a fella he likes.
It was at the Bloomsbury Theatre, which is a modern building not far from Kings Cross station.
It took me about 90 minutes to get there via public transport, which all went smoothly.
He’d checked to see it was accessible and it was …

I arrived and noted all the steps in, and the absence of a ramp.. there were notices on the windows boasting (‘ Step free access around the campus ‘ )but there was a lift from the pavement level, but it did look small. As I can’t go anywhere outside without my triride attached, that’s then part of me.. not something I can just leave outside on the pavement.
I squeezed diagonally into the small lift and pressed and held the button ( just like it says to do ). The door behind me closed.
Then the door behind me opened.
I took my finger off the button and then pressed and held it again.
The door between me closed.
Then it opened again.

I tried a further few times with the same result.
I pressed the Help button in the lift.
Where are you, the voice said.

I said loudly – I’m in a wheelchair at pavement level and I can’t go up.

I can’t hear you, the voice said.
I shouted the same again ( twice ) and the voice said someone would come.

A passer by asked if I needed help. He said ‘ that lift is a waste of time, isn’t it ?!’

A fella came and got in the lift with me and pressed the button to go up.
He asked the passer by to close the door firmly… at which point we moved up.
So the lift works fine for a wheelchair user that can get up and slam the door behind him/ her ( and them, of course ) Maybe they should put up a sign explaining that?

I’m then in a foyer with a reception and a cafe. I go into the narrow cafe. I get to the coffee bit and it’s shut. The cafe is that narrow that I have to reverse all the way out…?

I go to the reception and say I’m here to see the speaker, and ask where he’s on. She says it’s through those double doors behind you.
I said ‘ so it’s on this level and is accessible then?
She said yes.
I go to the doors and behind them are 2 flights of stairs. There’s a kind of stairlift mechanism on the side.
I go back to the receptionist and say ‘ how do I operate the lift? It’s not level access like you just said ‘. She looked as though despite working yards away from the stairs, that she had no idea they were there.
She says I can go in the regular lifts to the second floor.
I wait for a lift. When the door opens it’s a square one and no bigger than a metre in any direction. Given I’m a metre and a half long, that’s a problem that I can’t get around… so I decide to call it a day.

Now I have to get back to the pavement and am starting to feel trapped in a building where I can’t actually go anywhere.

I ask the same receptionist to help me with the lift down to the pavement, since I’m one of those wheelchair people who can’t jump out to slam the door behind me, once in the lift.

The lift was down at pavement level and I’m a floor up. When I press the button to summon the lift, I can see that the door opens at pavement level… rather than brings the lift up to me.
The lady goes off for a while… and then comes back to say ‘ we have another lift over there, through the ( one metre wide ) cafe ( that’s not open ).

She and a security guard move stuff and open doors so I can get to the lift… which does actually work and I can fit into ( just ).

Now I’m back on the Tube.. on the way home.

It’s raining and I wonder how wet I’ll get on the way back.

That was a Live and Learn, yet again.

Essentially take no notice of what people tell you about Accessibilty, and believe nothing until you actually get there.

It happens to me a lot.

Tonight I went to the theatre to see Blithe Spirit.

The thing is that I saw this very same play before in Richmond, about 2 years ago. It, as it did today, and starred Jennifer Saunders as the main character.. but I think I may have had a few too many drinks last time… so i swear I’ve not seen it before!

Anyway, Nicola and I loved it. Very funny – and it was written 80 years ago?! As with lots of plays written that long ago… because human nature hasn’t changed much , they still count just as much. Mind you… will the PC police soon step in to cancel all ‘ old fashioned notions’ and rewrite history? I think this has happened before… in all dictatorships.. the burning of books from the past etc.

Asides from that thought it was blimmin brilliant and you should go.

As I triride back from places at night i’m beyond increasingly aware of the reckless behaviour of other cyclists – not ‘ proper ‘ cyclists, who are road aware, but the numerous ( mostly under 25 ) cyclists who have rented Boris bikes and have no idea how vulnerable they are on London’s roads. Loads cycle completely randomly, on and off pavements, no hand signals, no looking behind them before they change direction, talking to people on hands free whilst they are in the traffic ( oblivious therefore to all around them )
I actually feel for the drivers who are now assumed to be at faut by default ( law wise ) when they get knocked off. Seeing what I see every time I am out at night, it’s almost certainly NOT going to be the fault of the car driver. ..

And of course I’m not against the concept of the Darwinist ‘ Elimination of the Dickheads’.

That’s a lesser known essay of his that applies here.

Oh and today I went to the National Gallery as well – just amazing stuff, everywhere.
Mind you, some of the works just CANNOT have been thought up by mentally ‘ normal’ people. A lot of those Old Masters must have been on the Mushrooms.. and I’m not joking – the mixture of nudity/ apparitions/ dragons etc etc cannot have been the creations of standard mindsets. I mean, we just don’t know what psychedelia went on back then, but mushrooms predate humanity by zillions of years … so that’s my conclusion for sure.
Am I the first to propose that, I wonder?

Not even living in Milton Keynes will save you.

Just got hit by a motorbike. It was my fault. Crossed a road between stopped cars and didn’t expect a motorcycle to be there.
That could have been terminal if I’d crossed half a second earlier.
A motorcyclist put me in this wheelchair in the first place.. maybe it’s just unfinished business!

As it is there’s no damage done, to him or me.

Another life gone then. That’s about 12.