And good to see Toby n Cress, along with my daughter, and Ella too last night. Xmas dinner early in an Italian no less.
Also good to see my ole kayak buddy Rob today. I now live where he and I last paddled , when it was derelict warehouses bordering a canal. Times change, they do.

Thanks to Lily for her help last night, to G Spot today, and to Pia too.

Keep on keeping on… n all that.

An ever present difficulty I encounter is having to ask any Carer to do anything ‘ practical’. That’s essentially anything at all which involves the use of a tool.
Tools include screwdrivers, spanners, scissors, files… well you name it really. Anything metal that you have to use with your hand. Before my injury happened I didn’t have any concept of how widespread this ‘ problem’ is. It does explain how the handyman job is alive and well, and definitely won’t ever become a redundant post.

Because I am in a ‘ vehicle’ ( wheelchair ) ALL of the time ( except for when I’m in a mechanical bed, or in an electrical hoist , I can’t really pretend it’s not a constant concern. The nature of wheelchairs is that regular tweaking to the moving parts is a given, and is unavoidable.

When you are actually IN the chair then you can’t be doing anything to it at the time, so often I have to explain to someone else what needs doing. But it’s just scary how even otherwise intelligent people can just go to pieces when asked to turn a screw or a bolt, using a tool.

Invariably the thing I’m hoping someone can help me with is actually incredibly straightforward, and involves one bolt or one screw, but Lordy it can get ( nearly always gets ) extremely fraught.

As I don’t have a choice. When something breaks, or may break unless it’s attended to, I CANNOT just leave it. If I don’t have brakes, or my tyre is flat, or my wheel may come off, it’s not an option to just ignore it. Well think about it… it’s not!

I really do hate asking people who I know will go to pieces to help me, but sometimes I have no choice. It’s not as though there are loads of practical people wandering around in my flat. Today I was honestly very close to tears. When you just run out of ways to explain something really simple, and you get nowhere, and no it’s not changing a gearbox or servicing a bottom bracket, it’s just tightening a bolt, then I really don’t know what to do.

And the thing is, whilst the person I’m paying to help me is allowed to get upset with me, it’s seems I’m absolutely NOT allowed to express the slightest amount of emotion to them. Well that’s more than quite difficult. I mean if you saw someone feeding your baby, for example, and they repeatedly poked the spoon into your baby’s eye rather than into its mouth, well it probably wouldn’t be long before you said anything, and your words would almost certainly be laced with ‘ feeling’. Yes, it’s just a tad annoying even, isn’t it? When someone surprises you with an inability to do something really obvious, it can actually be mind blowing’ly frustrating…but I’m not allowed to show it, no matter how long it goes on for, because then… I’m the angry and ungrateful wheelchair man, rather than the chap who really really desperately hoped you can help him, and is paying you to do so too.

And that, dear reader, is my lifelong curse. 🙂

PS As if to illustrate this point perfectly, just after I’d written this, I had to leave a building. There was a lady in the atrium stood near the exit door. I said ‘ excuse me but would you mind opening the door for me ?’

She looked at me, nervously, and said ( and wait for it ) ‘ how do I do it ?’

I said ‘ well you turn the door handle and pull …’

I think it’s just a thing that overcomes otherwise sane human beings when they see a wheelchair user? It’s definitely nothing I’m doing, I can assure you!

I went ( and Lily met me there ) to see the reorganised Death of a Salesman last night. On the way back I wrote down the ‘lessons’ highlighted in the play. I copy and paste below –

Your employer doesn’t care
Your family let you down
You let your family down
You all do things which disappoint each other
Your expectations aren’t met
Your expectations are unrealistic
Your friends don’t live up to your expectations of them
You fail your friends
You are much more important in your imagination than you are in reality
Popularity counts for nothing ultimately
Money talks
Financial success wins the day
Former glories mean nothing years later
People have short memories
One good turn may deserve another, but most definitely doesn’t guarantee one.
Promise is nothing without results

Those are in no particular order, just the order I wrote them in my phone. As I finished that list, I heard a fella behind me saying exactly the same to his mate. He’d taken a photo over my shoulder of what I’d quickly typed onto my screen.

It’s the saddest, most sobering play. For me, the themes above are not just fiction. I’ve lived through all of them, already, though the last 6 years have contained all of them, pretty much.

That’s sad for me, but of course I do see that these things happen to everyone, not just a fictional salesman and a good looking Welshman in a wheelchair.

No one is immune, my dear readers……

And yes I did get home. Wet, but ok.
Thanks to Chris Cats for the chat, for lots of nice messages, and for words of encouragement in general.
Against the odds ( he thought yesterday) today was a good day.
Thanks so much to G for her help this morning. What would I do without her?!

I went to Kings Cross this pm. That area has altered! A pretty good time was had, too.

People sometimes say that my diary probably doesn’t tell the full story and that there must be something more. Er, is that then that I haven’t interviewed the bus driver to ask him why he didn’t let me on ( for example ).
No, that’s correct. It tells it from MY perspective.
Isn’t that the same for everyone?

I mean, when on say Instagram, is there a picture posted by a 45 year old woman in an expensive dress and expensive shoes, with expensive hair, looking fine.., but underneath with a disclaimer written by the long suffering husband saying ‘ this is NOT what she looks like in the morning, and naked she has a fat ass and saggy breasts.
And her breath stinks sometimes’.

So no, it can’t capture another version other than my own. But shit, I do tell it like it is for me, with all the harassment and discrimination that goes on. I used to test one lady s eyes that was in a chair. She had MS. I thought she was a really unpleasant woman. Perhaps she wasn’t. Perhaps I saw her on bad days? Perhaps she had a fear of opticians? Perhaps she just didn’t like ME? Who knows the full story?

And when you find fault with someone, guess what? Well invariably their reaction is to find fault with you, straight back.
That’s life.

Sometimes people say to me that perhaps I need professional help, You know counselling, talking to someone, and then I’ll be cured.

I’ve seen 5 different psyche people over the years, more recently a professor in Harley Street for 4 months. And guess what he said? That I was crazy? That I needed loads of help? Nope. Every consultation he’d listen in amazement at what I’d done since I last saw him. Even getting to his appointments meant solo 10 mile trips across london through the traffic in a wheelchair. Psychiatrists are used to people who have difficulty doing things, who don’t want to leave the house because they imagine they can’t because a plane might fall on their heads, or they may see a magpie. He’d listen to me and about my forays and be amazed. He said I should be proud of myself, and then we’d talk about teenage girls and he’d tell me that everything was going to be ok in time.
But the thing is that ‘ being proud of yourself’ isn’t enough to make everything ok. Oh you’re such an inspiration! Etc etc. All wheelchair’ists get that one. It makes the people saying it feel better. Those people don’t actually feel inspired for more than about 10 seconds in actual fact, but they still say it. But for the poor bugger in the wheelchair nothing has changed. He doesn’t feel any better for the bullshit flattery. He’s still got MS or paralysis.
That guy who paints with his mouth and can’t move anything else. You think being told he’s brilliant and an inspiration makes everything ok for him? Do you think he wouldn’t swap his oral talent for the ability to walk a few steps? There are probably plenty who think he must be really happy. Is he fuck. He’s broken inside but is making the best of a shit situation. And that is all.

It’s midnight and I’m alone on a tube train heading west.

I got to Brixton, and I got to the gig. It was packed with really really pissed people. The access platform wasn’t policed and it was overrun by the crowd. Pissed blokes were hanging off it all over the place. I felt completely endangered throughout. It hadn’t occurred to me to have a drink before I went in, or take some with me, as tonight I had to manage by myself, and have yet to get back and get myself into bed, with all that entails.
What I realised tho is that without a drink to take the edge off my senses, it’s just all too much for me. I felt very afraid, and very alone.

God it has never occurred to me that I’d be dependent on alcohol, not in an alcoholic way, but as a sedative to take the fear away. Let’s face it the stuff can take you from normal to happy, but also from terrified to ok, I now realise.

It’s an uncomfortable realisation for me. I feel no ‘ urge to drink’ but can see the sense in doing it, having just had the night I had. So yes, I can just not go to things, but then I’d feel I’ve failed too. I seem to be in a no win situation.

It’s pouring with rain and I’ve got to go 2 miles by road. I’ll be soaked and I can’t dry myself at all easily.
More reason to just give up.

It’s not going to be a happy ending with Wendy. Apparently, in her words I’m ‘ perfect 95% of the time. but the other 5% I can be irrational/ unpleasant’.

Well to be honest given what I’ve been through these last 6 and a half years, if I was perfect 5% of the time and irrational 95% it would be fairly justified. Having been privy to glimpses of partners of paralysed people’s conversations, it’s fair to say that it’s unpleasant most of the time for them. Guess what? Paralysis isn’t a happy place to be at. Being happy all the time and being perfectly nice all the time isn’t that likely. For the non paralysed I’d doubt many fellas get 95%. That’s a super A ⭐️ grade. Pre injury I doubt I’d have hit 30% Amazing, so I’m actually pretty chuffed at my score.

What I’ve noticed is that I have regained the notion of sticking up for myself. I was ever so meek post injury for a long time, definitely enabling people to take advantage. I don’t regard sticking up for myself as a fault, tho on Monday I did get very cross. I’d say it was the first time I have been really cross since my injury tho. What others may see is just the angry fella in the wheelchair. What they haven’t seen is the drip drip drip drip of discrimination and fifth class treatment I get from so many quarters. That builds up and up and it’s a bit pressure cooker. Pre injury on the bus I’d have dragged the guy off and pummelled him, no question, for the way he talked down to me. It seems now tho that I’m expected to accept it and be grateful.

My Carer forgot to come today. By sheer fluke someone was available to help me, but I did think that I’d just be stranded in bed. When I told him he’d really let me down, he resigned. Wow, there’s professionalism for you.

So, what’s next I wonder? It normally comes in 3’s doesn’t it? I’m not going to shrink and die, I’m going to try for a bit longer at least.

Cessation of posts does of course mean one thing and I can’t count that out, but first im going to see The Libertines in Brixton. I’ve got someone to help me. 👍

Oh and good luck to Wendy. Great girl. Not 100% perfect all of the time by any means. But I looked more at the positives, cos that’s what I have to do.

The price I pay for getting out there as much as possible, is seeing the odds stacked against abnormality. To go from being admired perhaps to being shunned is ever so hard an adjustment to make.
The more you try, the more often the adversity you see. Disabled Hate Crime they call it now. It’s more a fear in people of something they don’t understand, and then their odd reaction to it – always an adverse reaction, or possibly a positive reaction borne from initial revulsion followed by overcompensation. … who knows? I’m now at the receiving end of it every day, every time I leave my flat. I try to ignore it, but it seeps into my skin.

And perhaps I just can’t take any more? Or can’t be arsed to take any more?

Thank you to the Good People though. There are a small percentage of humans who are, usually that way because they’ve been touched by tragedy themselves perhaps, through their relatives or friends’ misfortune.

I always used to like Christmas, but now I just don’t fancy this one much.

❤️

We saw Sinead O’Connor tonight. It was a surprise to see that she’d converted to Islam and the little elfin chick was now clad in a full burka… she still sang songs that weren’t ‘ very Islamic ‘, starting with one that had her singing that she had pissed in someone’s wine glass.
She was pretty good tho, tho not quite what I had expected. 5/10 from me. No, I wouldn’t see her again.

The night was drastically overshadowed by yet another bus journey calamity. This time a driver refused to let me on, by which time I was actually already on. He objected big time, despite the parents of the buggy babes actually being ok.
After about 4 miles of peace, a passenger took it upon himself to stage a verbal attack on me, saying I was ‘ anti family ‘. See… wheelchair user vs baby in buggy gets only one winner, and it’s not the wheelchair! People can relate to parents and babies but not to disability. As I just can’t help standing my ground, it got VERY heated. Essentially I wanted to kill the fella that was giving me a hard time. Well I’ve just had enough and no one stands up for me, so I have to do it myself.

The subsequent events resulted in Wendy and I splitting up. She says I got too cross. Well … she’s not the one dealing with the unrelenting discrimination I am on the end of, is she?

I just can’t be meek I’m afraid. Oh to have a hitman go round with me 24/7.