New things ?

Well I hadn’t seen Erasure until Friday, I hadn’t listened to a Ben Saunders talk about Polar Exploration until Monday, and I hadn’t been to the esteemed RAF club in Piccadilly until tonight!

Neither had i contemplated flying a microlight aircraft until this evening, but it’s now certain that I’ll give it a go.

It is a bit of a death wish hobby, so that suits me down to the ground … literally…

Thanks to all the people there, who make the charity possible – what a brilliant night. Seeing the current land speed record holder, and listening to him talking about his next attempt – to reach a 1000 mph in a car – was incredible. He quoted all sorts of stuff, but the thing I remember most was that at 1000mph the pressure of the air on the car itself was ‘ the same as 3 African elephants standing together on one square metre of the car’s surface’.

Mental stuff.

Thanks to Toby and Cress, and great to see Tom there!

I had a squamous cell carcinoma – that’s a proper cancerous lesion, that one. They had managed to cut it all out though, and today the consultant checked me all over, or at least where he could see ( me being in a chair ) and felt the lymph nodes under my arms, around my neck and also near my ears. He said it all seemed ok, and said that there was a reasonable chance I’d get more, and probably in the same area, so to be vigilant.

I was completely indifferent to his words, neither feeling relief nor disappointment. I’m perfectly content with my expiration, but these days ok with sticking around, which is a seismic shift from not that long ago when I’d have crossed my fingers for bad news.

What I am dead set on doing is making the most of the time i have, though don’t care if that’s 3 months or 20 years.

My next check is in 3 months.

We have just rode here through the falling snow. God knows what the car drivers thought of some bloke in a wheelchair trike weaving through the rush hour traffic wearing a ski helmet and a face visor with a grinning skeleton face on it….

I have just had some different very sad news also, that is related to me, but indirectly. I’m so sorry, and will be thinking about that a lot for a while. Thanks to Jeff Thomas for telling me.

Last night, I went to Brixton to see Franz Ferdinand. They were absolutely immense, i have to say. Their fans range from kids to people as old as me…

I’ve never before witnessed a whole audience so focused on an act. The front man has such charisma and presence  ( and intelligence ) that he is mesmerising.

Its a 10/10 from me for FF, as it was the last time I saw them, pre injury. If you don’t know them, look em up!

Getting to Brixton was extremely difficult, as pretty much the whole rail network seemed to be closed, so in the end it Uber to the rescue. What a lovely man that drove us there, after our temporary stranding in Shepherds Bush, and then came back to get us afterwards. Massive thanks to Iffy, for his attitude, and kindness and dedication to the disabled ( me ).

The venue itself didn’t get the same thumbs up, and I’ve emailed them to point out where they definitely weren’t abiding by their own commitments to looking after Wheelchair users. Fingers crossed that next time I go, they’ll be more into it.

Overall, it was well worth the difficulties experienced, and I always look to the positives in every situation I’m in ( these days ).

My lovely companion had a brilliant time, or so she said anyway.

Russ

It would seem that we have made a difference.

TfL have sent urgent communications out to their bus drivers, on the Back of our emails about driver behaviour and attitude.

Suddenly it couldn’t be more different. The buses now stop in the right Place and the driver gets out of his ‘locked behind Perspex’ cabin and asks me if I’m ok, and where I want to get off.

One said ‘ there’s been a wheelchair user that’s been receiving bad treatment around here, and we’ve all received messages that we have to be very helpful ‘.

The thing is that when the drivers get out and speak to you, suddenly it becomes human contact, with words exchanged and eye contact made, and then it’s a ‘ relationship ‘ and trust is formed. I NEED to trust the bus drivers to be helpful to me. I’m completely at the mercy of their attitude, and when it’s positive, it’s lovely.

And it’s a 2 way thing – I think it’s nice for them too to hear us say thank you. Everyone likes to feel good, and a few words delivered pleasantly, or the receipt of praise, is a powerful thing.

I’d actually talked to ( Baroness) Tanni Grey- Thompson, The Wheelchair  Olympian, who sits on the board of TfL ( well she wouldn’t be standing on any boards, for sure ). We chatted for about 20 Minutes the other day. She said that the bus drivers get lots of abuse from people, and possibly that makes them tend to be prickly when it comes to ‘ customer service ‘.  I completely understand that, of course.

Next time you catch a London Bus, do smile at the driver and say something cheerful. It may make his / her day?

It’s a very interesting thing, this, to me – how readers of this diary interpret and read the meaning into my posts.

Those that know me see and know that everything I write these days is with a wink and a smile, but with a point. I do want to highlight the lives of those that are paralysed, as of course thats what I have no choice but to lead…

But… and it’s a big but ( sometimes a big butt ) other people may well read solemnity and ‘ ranting ‘ into my posts.

Having never ‘ ranted ‘ once, via blog or in person, it’s been a realisation that it’s the mood/ personality/ predisposition/ mental state of the reader that actually determines the interpretation, rather or irrespective of how I write it. People with ‘hang up’s ‘or self pity will feel that in my posts, whereas people who actually know me will see me smiling as I write, with the ingrained determination to make the best of a situation that is in me.

Those ‘ lucky few’ that have paired with me in kayak and endurance events will know my ‘ spirit’ more than anyone.

‘ Rant’ over ( he wrote with a smile, for the sake of the less happy )

As a lot of people asked me if I was getting my disability kit back from a certain woman, the answer is yes, I did yesterday.

Linda did have to drive down to pick it all up, and it was  largely there.

It did take a police telephone interview to ensure that PC Plod was behind me all the way, and I know they ‘ had a quiet word ‘ with her.

As she is a vet, she can definitely do without having a criminal investigation on her record, so it was far better just to give the paralysed geezer his ramps etc back.

So she did 🙂

Thanks, honey x

Lovely to see Clair, my long time friend, yesterday. It’s good to chat to a financially savvy person about stuff, and more fun if it’s a girl, obviously.

Big love.

Thanks to Rob for his time the other day, and his ever appalling jokes…. to Jane for hér wisdom, to Chris for his recent visit for the day, to Mark, Jo and Cressida for losing to me at Balderdash, to Skye for coming joint first with me, to Pia for all her love, to Linda for learning to tidy up without a maid ( yep, no reliance on those formerly  enslaved by the British Empire, here in London  – you gotta do it yerself…)

I managed to double book myself on Saturday night, and have a wheelchair ticket and Carer ticket to see the somewhat legendary Fat Boy Slim in Alexandra Palace that I can’t use… but do you think I can shift those tickets to anyone else with a Spinal Cord Injury ( paralysis person ) like me? Nope, the thousands of others out there don’t wanna brave it and get out there, it would seem?  Whilst I’m a little saddened by that, I’m pleased for myself being the only one to apparently push on regardless, so Go Me. Most people in the Access platforms aren’t in wheelchairs, and don’t appear to have anything visible ‘ wrong with them ‘ but of course I don’t know their medical histories, so can’t really say too much – well, until they stand up in front of me, at which point I might. I’m thinking of carrying a water pistol to gigs, so that I can get people who stand up right in front of me, to move  a little out of the way…

I’m seeing the very talented Franz Ferdinand instead – no not the dead Arch Duke, but thé band. I saw them years ago and they are just brilliant! Last time I saw my lovely friend, Sue there – I wonder if that’ll happen again ?

i continue to face the possibility of homelessness, with the stark reality of being refused a mortgage by lots of lenders, because of the cost of my care, which I have to pay for myself. Work in progress though..

Other than that I get the ‘ urgent ‘ appointment post skin biopsy on Monday morning, to find out how long I’ve got left….or not. I may not even need somewhere to live!? Well that would be one positive !

My spasms are definitely back with a vengeance – I don’t sleep much in general, due to my left leg running it’s nightly 10k, and as I can’t  lie down in the day, like all you normalpeeps, I don’t ever ‘nap’.  Hey ho, I just suck that up and carry on. No choice there, I’m afraid. The spasms are always for a reason – I do know that… maybe I have an undetected health problem that will be revealed to me on Monday, that’s responsible? I didn’t use to sleep enough Pre injury, and coped fine, so I guess at least I have the training….

My carers all get far more sleep opportunities than I do, but consistently ‘ complain ‘ about it far more than I possibly could. I suppose that’s just human nature. I’ve noticed that those I consider my best friends ( all people i admire and love deeply, and am grateful too in spades )  are invariably people that don’t actually complain about anything, at least not to me. Isn’t that an interesting observation, it’s just occurred to me.

No coincidence, I feel !

Without the rude bit on the bottom of the mug!

Clever Marky P!

So it’s a MASSIVE thank you to Lester the ‘ amateur boffin ‘ who reassembled my iBot charging plug so that it’s functional and at least useful for its intended function ie charging the iBot.

It means that I have a functioning charger AND I have a replacement plug if the fixed one fails – a plan we decided was better than taking the whole lot apart, with the inherent risks of doing so.

I have a picture of Lester, which I could have posted, but my Carer, by mistake, gave him a mug of tea where the mug had printed on the bottom ‘ I’M A TWAT’ …

I felt it wrong to post that picture, as Lester is anything but, but I thought it was worth explaining the absence of an image in this post.

So – Go Lester, you da MAN!

Eternally grateful,

Russ