Family.

This week has been unusual in that I’ve seen my family. My parents came on Tuesday, and stayed the night for the first time, and then my older brother dropped in from the US of A and spent Wednesday evening and last night with me ( and last night met the lovely Wendy )

My parents were on top form, and it was just brilliant to see my brother. Funny isn’t it with siblings – you still think of them like when you were all kids, but now you really aren’t, and actually have kids yourself that are almost not kids anymore. In reality you are very much grown up. My brother has become a very wise fella, helped in that by his career having led him to meet an awful lot of people, and his insights were most helpful about a lot of things, enabling me to look at things from a different perspective, ultimately to help remove certain ways of thinking from my mind. There are things that have bothered me for years that now I think won’t in the same way. Sometimes you want things that you are unlikely to get, and the more difficult it seems to obtain them the more you want them, losing sight of what it was that you would actually have achieved by wanting them in the first place. Looking again at certain things now that I’ve felt were absent and important to me, I realise that in fact they are far far less important than I thought they were, and if I’d had them I wouldn’t really have been better off than I already am.

He and Wendy got on really well, which of course was expected, and he said how special she was, to me. She was laughing as she and I went home ( from a restaurant! ) and said ‘ he’s like a more sophisticated version of you, isn’t he?’

Bloody hell, what a thing to say! Even more polished than me?! He must be bloody gleaming, right? I’m surprised you don’t have to wear sunglasses to even look at him…..

As he wasn’t always as he has become, it does prove one thing.

You really can polish a turd.

Yesterday I found out what it is they are doing to Brentford, as they are pretty much knocking the whole town centre down and starting again. It’s going to be very different here in about 3 years, and by 2027 it’ll be completely unrecognisable. By then I’ll be almost 30…. but almost certainly not yet a grown up….

In trouble again?

You know I had a frontal lobe injury in my accident. That means that I’m almost certainly less inhibited than before. I’ve often no idea that things I say that I think are constructive or helpful ( and definitely not rude ) can apparently wind up ( some ) sensitive people.


Nobody complained before my injury about me, so if I’ve always been rude then why did people accept it before? And if you put up with it before, but don’t now, then what has changed? Either you have, or it’s something about being offended by a chap in a wheelchair presumably ( which obviously is very discriminatory ).

I’ve just been ‘ threatened ‘ with banning from the local residents Facebook group! My crime this time? Someone that I actually know posted that they ‘ needed ‘ a cleaner. Various people piped up with suggestions, ranging from £12-15 per hour ( blimey that’s good pay for doing something as easy as hoovering! ) As I do all the cleaning that I’m able to myself ( yes, there’s a fair bit that I simply cannot do ) I wrote ‘ you could always just do your own cleaning?’ As the person isn’t in any way physically disabled, and isn’t that well off either, I considered that a logical suggestion.

The reaction? ‘ you’ll have to be removed from the group if you make ‘ nasty’ comments ‘.

Nasty? Really? If I’d added ‘ you lazy slut’ or something, then yes, that would have been ‘ nasty’ but saying someone can do something themselves surely can’t even be unpleasant, rather it’s surely ‘ empowering ‘ or something?

I get regularly bewildered by the reactions of people, since my injury. I didn’t so regularly before, so I guess my thought process has been altered by my bang on my head. That’s logical, isn’t it?

The lady banning me is called Philippa. She has actually been reasonably helpful to me here and there before now, but I don’t think she will be in future? As I actually belong to the Residents Committee, and so does she, it might be a bit uncomfortable ( for her at least ) in future, in the meetings?

I think she may be causing more problems for herself than she is solving? Oh well, never mind, I’ll keep smiling.

And if anyone wants a cleaning job for £15 an hour ( that’s double the minimum wage of most that work in shops and in hotels etc ) then please get in touch and I’ll pass it onto the people round here who have too much money / are far too busy doing yoga or something, to run their own hoover round.

View from above!

And to celebrate our 1 year together we went to the highest point in London.

The Shard viewing gallery is for me something that you could never possibly get enough of Not sure if everyone agrees with that, but hey.

1 year

For Wendy and I it’s a year today since we first met. I did know she was a person of compassion, amongst many other qualities, when I first met her, and even in the texts and phone calls. That’s not to say that everyone who’s disabled has to have a compassionate partner, but it certainly helps. Empathy and understanding ( as best you can at least ) goes a long way.

The trouble with being disabled and being the ( willing, by choice) partner of a disabled person is that it’s not ‘ merely ‘ a state of mind, it’s a state of reality – that disabled person needs help to even exist. It’s not just a case of hanging out or doing stuff with them in public, it’s all the behind the scenes stuff that is obligatory too. I have no choice but to need help – it’s not optional to give me help, it’s actually totally necessary- unless I opt ( or it’s dictated to me ) that I just stay indoors/ in bed. Many in my situation just accept the imposition of restricted life. What I do is to rebel against that. I’ve never liked being dictated to or told what to do, and I am still the same. By the same token I don’t dictate to anyone else. Wendy has zero ‘ pressure ‘ from me to do anything at all. All that she does is freely given. That she opts to do so much is what makes her truly special.

I’ve seen so many people that seem almost devoid of the C word altogether, not noticing pre injury but now seeing clearly. Some of those very close to me previously, have little, and are just memories. It does take the shine off an experience which seemed good at the time, but in retrospect was ‘ enjoyed ‘ with someone that proved themselves only a fair weather friend. And lots of those about for sure. You don’t find out til the crap crashes into the fan. Does it make you regret having spent time with them at all? No, not really, not completely, but it’s all tainted quite markedly. The closer was the relationship, the more tarnished is the memory.

A lot of people think that you shouldn’t feel sorry for someone that has a disabling condition. That’s odd to me. I’d have certainly felt sorry for anyone that lost a leg ( as a childhood friend did ), had a brain injury ( yes, know a couple ) or had cancer ( yes, know lots and lots ). Of course you feel sorry for them. If you don’t, then what do you feel? I mean, what’s left? Indifference? Pleasure? My mind boggles to be honest.

It’s hard though to just be so iron willed that you can just forget people, but I imagine that’s because I am one who has compassion. If I didn’t, then probably I could? I’m being told repeatedly by the kindest people I know that actually the best thing to do is to cut ties, for my own sake, so that’s the plan.

Happy anniversary Wendy. You are indeed one of the best people, for sure. Wendy definitely loves me more than anybody ever has ( and I actually mean anybody at all, ever, including everyone I know for whatever reason) , and that isn’t in doubt. I ought take solace in that? If someone so ‘ good’ can feel that way about me, then I must be alright, right?

Last night

Tonight we saw Lewis Copaldi. I have to be honest when I say I knew absolutely sod all about him ( he’s a singer ).
When this bloke came onto the stage, at first I thought it was a fat roady just checking the microphone was working, and then was surprised he started singing.

He looked like a young Boris Johnson. Chubby with quite a lot of hair.
When women started throwing their underwear he was very amusing about it.
And I’m sure his drummer was Ricky Tomlinson, off The Royle Family.

In fact he turned out to be very funny – a piss taking, and self deprecating Scottish bloke of 22.
At one point he introduced ‘ his Bald fucker manager, Scott, who had just had a hair transplant at 28. He was sort of nice about him and ‘ then said ‘ Fuck off now ‘

That boy can sing though, and clearly can’t believe he’s headlining big crowds, probably more amazed that those crowds include posh ones in Kew Gardens.

I was of course on the human scrap heap that is the wheelchair/ disabled platform. It’s not a great place to end up, that’s for sure. I don’t recommend it as destiny.

Most regular people avert their eyes as they pass by, I notice, which I at least do understand. It’s what ‘ polite people ‘ do – not look for fear of staring at the funny people ‘ In Wales when I grew up, you’d have had kids pulling faces at us, like they used to at the Sunshine Bus, as it was called, even when the name was changed to something else.

I confess I find that a little amusing still, even now I’m on the wrong side of the glass.

Lewis himself 10/10. I had no expectation but am really impressed.

Being disabled 0/10.

Wednesday

I bumped into a lovely lady yesterday that once taught one of my children. I met with her 2 years ago and she told me that she had cancer ( at 36 ) and that it was serious ( as in terminal ). She was however incredibly optimistic and hopeful that she’d get through it.

To even see her alive yesterday was a surprise, and looking so well even more so. She told me that some months ago she was given 2 weeks to live, and thought that was obviously that. But after radical treatment ( medicine I mean ) in Germany, that isn’t allowed in this country, she’s alive and definitely kicking.

There is so much spinal stuff that we paralysed would volunteer for, but it’s not ‘ approved’ so only rats get it.i couldn’t give a fuck about side effects – I’d just take a bit of recovery!

She asked after my kids. I explained that the one she taught isn’t in my life at all sadly, and the other is barely. Who’d have thought it? She knows what a doting dad I was, and still would be just given a chance.

And another one

A friend of mine from schooldays wrote to me recently. We played county standard ( Gwent schools ) together for 2 years. He told me about his friend’s son ( 19 ) who had fallen asleep ( alcohol I’m sure ) on a sea wall, and fallen off, 15 feet onto his head. The boy had it all – popular, good looking, sporty, bright.

I wrote to the lad’s Dad. I’ll hopefully go to see them both in a london hospital soon.

When I last wrote to the Dad, I said that I wouldn’t be able to make it to the hospital in a morning, ‘ such being disabled life ‘.

It occurred to me actually just now that perhaps I presented him with that word for the first time. Until now, and thus far it’ll have been all optimism and hope ( unrealistically probably ) that the lad will be fine again, having recovered from his currently severe injuries. Lots of people will have been saying and thinking ‘ we hope he’s going to be alright ‘

What ‘ alright ‘ means is ‘ is he going to be normal, as in just like the rest of us?’ As in not, you know, damaged in some way… like disabled or something ‘

There’s an understandable optimism and desperation for a full and miraculous recovery. But all too often that doesn’t happen and it’s another life ruined, another person disabled… and no longer, well, normal. The world is made for normal, obviously, not abnormal. It wouldn’t make sense to make it for abnormal if you think about it… but thankfully now and for we abnormals it’s changing so that we can still do stuff with the normal people.

It’s the horrible reality but it’s not quite as horrible as it relatively recently was. We’ll always be stared at/ ignored/ pitied, and that’s understandable, but believe me it isn’t great.

Tomorrow

And the skin cancer check up again tomorrow, as more dodgy looking stuff on me.

Don’t they know I won’t die?! I’m immortal- impossible to kill so far!

Let’s see this time 💥

Riverside life…

Had my super hot ( lady ) gardener around yesterday. For a lady that chick is strong as…. you know what.

I’ve been trying to figure out why my garden smells like something died in it for the last month.

Turns out it was this plant with flowers that bloomed really nasty smelling flowers, or started to, about a month ago. So she dug the whole lot up and put wood chips over the area instead, and put a large drift log that she pulled out of the canal at one end to encourage wildlife, all whilst wearing little shorts.. it’s hard just watching and not doing, but there can be consolations…

As I write this I can hear an estate agent showing the flat upstairs to prospective buyers. Just as they stepped out onto the little balcony upstairs above me, to take a look at the canal view in front of me, a canal boat motored past with 2 young fellas on top. One of them shouted to another bloke on the towpath ‘ Oi, what you doing, you lazy fucking bell end!? ‘ To which the reply was ‘ Go fuck yourself, you pissed twat !’

I’ve never heard any boaters swearing this last year until they moment… but I think we can quite safely assume the flat above isn’t going to sell today…..!

You gotta laugh…..😂

Wednesday

After my various trials and tribulations On The Buses, I was offered by Transport for London a visit from a person to assess my wheelchair ( and Triride attachment ) to see if it was acceptable to travel on buses. If approved then I would get a special card, with my picture on it, and also a picture of me in my chair with Triride, that I can brandish to any london bus driver who says I can’t get on his bus, by way of saying ‘ Too bad mate, you’ve gotta let me on, because I have a special pass, and if you don’t you’ll be in big trouble ‘

The chap visiting was called Aerial. Needless to say I gave him a good reception ( there’s a joke in their somewhere ) at my flat, and he had a look and had a chat, and said ‘ it’s absolutely obvious that you should be let onto any bus, and I am sorry. Please call me directly if you encounter any more difficulty with any driver ‘

So that’s good then! Trouble over….. mmmm we’ll see.

Lots more happened of late –

had a Court Verdict that I’m not yet allowed to talk about, as it’s yet to be formalised,

been to a fascinating talk about world climate change with particular reference to Bangladesh, and what they are doing there by way of preparing for inevitable sea level rise. You see, it’s so low lying that loads of it will disappear under water with enormous effects on economy and population migration. The panel there included the world’s biggest cheese on the subject who said it’s theoretically possible to halt and even reverse the changes, but there is absolutely no time at all at all at all to waste, or we’ll soon actually reach the point of no return, where reversal is no longer possible

went to a festival ( Community- Finsbury Park ) – good bands but strangely muted and unenergetic crowd ( maybe because it was a Sunday and peeps take less drugs and drink less than they would on a Saturday?

been to a fetish party ( yep, lots of narcotic action there I suspect )

saw the amazing Cress in an outdoor theatre production of Salad Days

had my catheter renewed ( glamorous ) but without copious bleeding this time around,

and been to the funeral and send off of the very late ( but he actually always was ) Colin White. Loads of people there, I did make one of many speeches about Col, and it was a send off that he’d have approved of for sure. Saw lots of people there that I hadn’t seen for ages, with some that had avoided speaking to me for a long time now sort of having no choice but to ( or just look pretty bad for ignoring me ). It’ll be interesting to see whether they will now be able to maintain the geniality going forward too! For West London and for Chiswick Colin’s passing is the closing of a chapter. The man did so much! He saved my bacon once or twice, and he didn’t bar me from his club probably only because he liked me. I saw him in hospital a lot in 2018, but then it became hard to do that once he’d moved into a care home 40 odd miles away. My Triride doesn’t go that far, and isn’t allowed on motorways. However I did visit him with the help of his son about a month ago. Dementia is a very sad thing, and his onset was probably 10 years ago, though he was so eccentric and not rule abiding that it was hard to tell what was just Col, and what was irrational behaviour. I reckon it’d be hard to spot early in me for the same reasons… But rest in peace my old chum, and you’ll NEVER be forgotten.

So all in all a busy time then. I have a new carer too, which is going well. G spent far too much time enjoying herself with me and decided to go and use her skills to rescue someone else in need, which is understandable, and someone else stepped in.

I’ve even watched some Women’s football and the odd bit of tennis. The women are more watchable than the men, and you can check them out whilst observing their footwork ( if you like ) and the English females do actually have a hope, unlike their male counterparts.

Right, gotta go.