Monthly Archives: March 2018

Just unnecessary..

Spasms crazy all day again- though I did have the catheter changed by the District Nurse, who was lovely. 

Sadly I’d had to have a word with the practice manager about the rudeness of the doctor’s receptionist. What is it about the British Doctors’ Receptionist? Over the age of 40, I’d say they are a breed apart from normal humans. These days, a complaint to the Quality Care Commission can be disastrous for a surgery – why don’t GP’s tell their staff to be nice to the patients, I wonder? The British public have all experienced The Dragon Receptionist…. and it’s very apparent that they are not used to being called rude. As I am well acquainted since my accident with being ‘ dismissed as an imbecile because I’m in a wheelchair ‘ I think it’s a surprise when i complain in a firm and articulate manner, as I did today.

I’m really not on some sort of crusade to change the customer service world, but be rude to me at your peril, when it’s your job to be civil to me. My girlfriend works for the Quality Care Commission, so I am more acquainted with the standards they require than I was…. which was ever so helpful today…. it’s most certainly in breach of the Code when a chap in a wheelchair is made to feel belittled and insignificant by a frontline staff member ultimately employed by the NHS.

The power of ‘ I wonder what the QCC will make of this ?’ was definitely quite satisfying to see. If the receptionist had back-pedalled any faster, she’d have shot through the window…

The day got far better for seeing my buddy, Charlie P from Hong Pong, who was his usual fun self – we actually went to a fine art fair type thing in a posh bit of london. Needless to say, neither of us were remotely tempted to reach pointlessly for our wallets, as the cupboards would have been far too bare therein. Iconic Fashion house antique jewellery doesn’t come cheap, for sure, and neither of us are in materialistic relationships, and I hope never will be ( again ).

I thank Charlie for his unwavering friendship and support.

 

 

Sigrid.

Went to see a real superstar in the making last night – Sigrid ( from Sweden ) with my ever so cool girl. How sweet was she?! ( Sigrid i mean – though actually my date too )  21 and a bundle of sunshine, I’d say. Voice totally way bigger than you’d ever expect from a very petite girl.

Gig rating 9/10, and that’s without drinking any alcohol – which again I think is better for me, given the multiple challenges I currently face, and am really trying not to get wrong.

It’s far cheaper when you opt not to drink!

Very glad I don’t smoke – I had zero idea that it’s about 10 quid now for a packet of fags. How do people seriously afford that, unless well off?

True..

A text conversation just now.. ( after I’d sent some video footage of a gig last night)

Her – Hey bit dark but sounds good! Hope all good with you. Off to a course about dementia! Hope to see you soon could come over to chiswick house on Saturday??? Xxx

Me- Yes, sounds lovely! Xxx
Can you remember where the course is, and what time ,….?!

Her- 🤣ha bloody ha!!! See you Saturday xx

Her- OMG course was yesterday!!!

Me – Noo?!

Me – Really?!?

Her- 😬what am I like!!

( seriously… only she could actually do this ! ) 😂

Things are looking up, I’d say.

After a pretty torrid nearly 5 year stretch, I’d say things are looking up, with a brighter future in sight.

Ive tried ever so hard these last 5 years to smile in spite of the demons at work inside my head, but it’s always been a struggle to see the positives shining that brightly, with so many negatives at play.

I went through my phone contact list the other morning and had a bit of a clear out – erasing a fair few therein, which had a surprisingly positive effect on me. No point expending time or phone memory space on ‘ ghosts’, right?

I see moving out of where I live as a massive positive too, whatever happens next, tbh.

Best of all though, I’ve met a really lovely lady. I shouldn’t really get too carried away, I know, but there really is something very special about her!

Think we just saw Jesus singing ?

After the best 3 days ive had since my injury, and after seeing Morrissey in London ( truly incredible – never seen fan adulation like it – ‘ middle class’ adults just throwing themselves at him, both sexes, and being thrown off the stage by 20 stone security guards – to these people Morrissey is far more than a human being… )  the 3 days ended in a downer with a ‘ bus incident ‘.

As the police were called and an arrest was made, i can’t write above it, pre court case ( if that happens ).

Extraordinary what happens to me, and could have done with a few of my rugby mates there last night, to deal with it, as I am rather helpless these days.

Anyway, looking at the positives and keeping my fingers crossed for better things to come.

 

Russ

News flash. About time…

Wheelchair users to get priority spaces on buses
Wheelchair users will be given priority over mothers with pushchairs under new bus guidelines, the Government has announced.
The decision follows a landmark Supreme Court judgment last year that ruled bus companies must do more to make sure wheelchair users are given priority spaces on buses. The court ruled drivers must consider if it is reasonable to “pressurise” reluctant passengers to move. Nusrat Ghani, the transport minister, said: “Drivers need to play an active role in ensuring that the wheelchair space is made available… which includes requiring other passengers to move where necessary.”

In Remembrance.

See below an email conversation between myself and a friend of mine from school – when I say a friend, he was a lad that was 2 years above me in school but we played in the school Senior 15 rugby Team together ( i Would have been 15, as I was the youngest lad in my year – August birth – and he was 17/18 )  and when you’re in school 3 years is s very big age gap in every way – maturity / worldliness / drinking beer/ Girls etc etc.  >

The thing is that Ian Matthews was in a car that crashed and rolled over when he was 21, leaving him a quadriplegic – without leg use at all, and with limited arm function.

5 months after my injury, i emailed him.

 

Sent: Wednesday, October 09, 2013 3:14 PM
Subject: Hello mate.

Ian me old chum,

Just bade farewell to my folks here at Stoke Mandeville.
They gave me your email address.

So …. Now we’ve got something else in common it would seem!

I keep thinking back to that time in that pub near Twickenham when we hoisted you up in your wheelchair and you stuck a naked lady postage stamp on the ceiling ….
I wonder if anyone’ll ever do that for me, or whether I’d want them to!
Was pretty reckless, come to think of it.
But funny. 😉
If there was a wheelchair hall of fame, that day’s antics might just qualify.

Anyhow, after this initial contact, maybe i could ask you a favour in terms of answering a few questions I might have about life as a disabled person going forward..?

Would that be ok buddy?

Look forward to hearing from you.

Russ

Sent from my iPhone

On 10 Oct 2013, at 17:09, “Ian Matthews” <ian@ianmaff.plus.com> wrote:

Hi Russ
Great to hear from you and you seem pretty positive which is everything at this stage. Sorry to hear about what happened and I’m assuming what I’ve heard is correct i.e. that you’ve had a complete T12 break plus plenty of other bangs. Again I’m assuming that the other injuries are hopefully transient. From my experience after 29 years the spinal injury ain’t going away. The number one thing you need to know now is that this is the hard part. Things get much easier with time but you need to be patient. The psychologists say it’s like a bereavement and takes 3 to 5 years to “come to terms” with it. It is amazing that for such a physical injury it’s all about mentally coping with the life change and your new physical situation. This spinal injury isn’t going to kill you or even effect life expectancy. When I first had my accident, I remember another patient, called Dominic, saying that you need to go for it, be very positive about things or we might as well kill ourselves because the worst, third option, was to sit around being feeling sorry for ourselves, being miserable for the rest of our lives, waiting for an unlikely cure. Very hard hitting stuff but the best advice I ever had. (Dominic, who became a good friend of mine is dead now. He went for it, had an affair and his wife murdered him – true, honest.)

Of course I’m available anytime to answer any questions. Because of my degree and what I’ve read over the years I’m fairly well informed. As for the personal experience we are all different so you may feel later that some of my advice turned out to be total bollocks. Depending where you are (time post-accident) different issues have different importance and so I need to think back e.g. I suppose it’s all bladder and bowels at the moment. Also I need to remember that you will become mentally very tough about this but this will take awhile. I am that cynical old bastard so I apologise if some of my advice and humour comes across as too hard hitting. I can remember putting a brave face on things initially (telling everyone you’re ok)because it made people more comfortable when they first meet you. You will be pleased to know that that bluff does become reality though as I’ve said it takes time. Seeing true friends again was fine after the very first minutes of contact. Meeting strangers was no problem. I hated meeting acquaintances for a few years. They often visited you because they thought they should and so making them feel comfortable was a pain. Then after a year or two you still meet people who say what the fuck has happened to you. After awhile that doesn’t bother you and it’s fun making things up.
Just to end with a few positives. It’s massive to have supportive friends and family. It’s great you already have Danielle and the kids (I hear she has been amazing), it’s a pain messing about with women as well. Your fitness life-style will be useful with the rehab and the fact you have an established job where you use your brain (i.e. not a manual job like the roofers I used to meet). All very positive and will make the future a lot easier eventually. When discussing these positives you will probably hear people say that “you’re lucky……….”  Just tell them to fuck off and point out how statistically how unlucky you have been to have a spinal injury (I used to know the figure) it soon shuts them up.
keep in touch
Ian

Sent: Thursday, October 10, 2013 7:08 PM
Subject: Re: Hello mate.

Ian,

Love your frankness mixed with great advice and humour. I’d expect nothing less, having known you for a long time.

The late Dominic sounded like a bit of a boy! I hope not to live through this only to be murdered shortly after.

T11 is where I’m at, and yeah, it’s fucking horrible at the moment.
I’m almost drowning in love and  support though, which helps take my mind off it a bit.

I’ve become a right soft shite in terms of talking honestly about the way I feel, cos it seems a bit daft to pretend to be a tough guy now.

I’ll definitely tap you up for advice though as time goes by as I know you won’t mind.

In the meantime, how’s young brother Stuart and your folks, plus of course wife ( Rachel?) and your boy?

Russ

Sent from my iPhone 7 prototype.

On 18 Oct 2013, at 13:45, “Ian Matthews” <ian@ianmaff.plus.com> wrote:

Hi mate
A bit slow getting back to you. Had a busy week – mostly social, I have to confess. Met your Dad at Carter’s book launch on Tuesday. That went really well and he tells me he has been in touch with you. Unfortunately I’ll see Cart again this Tuesday for his Dad’s funeral.

Yes mate, the tough guy feeling will have to go on the back burner for awhile. I would go further, when I was where you are now I can remember feeling like a very frightened little boy with the big bad world waiting for me out there. Though I’ve said that it’s important to have supportive family around (which is very true) ultimately I came to realise that your on your own. I mean that in the sense that the mental challenge/readjustment can only be done by you. I am sure you will succeed but again as I’ve said before it wiil take time and you are going to have big ups and downs over that journey. Be prepared for some depressed times. I got it around 6 months post accident – a bit later than most – I’m probably just a bit thick. What did it for me was that my level of improvement was tailing off (until then I was getting much stronger and could do more all the time) and I was going out more and realised the world out there was not geared up too well for me (though those things are much better these days). So just remember these downers are going to happen but they will pass. I believe the head of clinical psychology at Stoke was my clinical psychologist at Stanmore – a northern Irish bloke. We had a good relationship in the end. When he first came to have a “chat” I was aware he was assessing my head. I told him to leave alone because he should know that “psychology was the study of people who don’t need to be studied by those who do”. He later told me my aggression/rudness was avery good sign.

Stew’s ok. We just went to Madrid together for Selwyn’s 50th. It was good to spend some time with him as we don’t see eachother that much (maybe for the best??). He hasn’t been in great health. He’s now diabetic and has cholesterol problems but unlike me and you he looks perfectly fit. Having said that if you listen to the moaning git you would think he’s having a tougher time than you. Rest of family all well.

speak soon
Ian

Sent: Tuesday, November 05, 2013 10:33 AM
Subject: Re: Hello mate.

Christ, did I not reply to you?!

Thought I had?
Sorry!

Half the time I don’t know if I’ve dreamt it of bloody done it these days..

Yeah, I seem to have stalled in my progression, tho ppl keep telling me I look much better etc.

Spend far too much time thinking about the past and feeling regretful for it all being my fault etc.

Plus thinking I’d be better off dead.
Morbid cunt that I am!

Am going to Twick on the 19th then Cardiff for the Aussies so stuff to look forward to!

But miss my fucking canoe and shivery mornings on the Thames.

Funny I miss the unpleasant things really..

Sent from my iPhone 7 prototype.

From: “Ian Matthews” <ian@ianmaff.plus.com>
Date: 15 November 2013 at 13:19:12 GMT
To: “Russ” <rdawkins2@sky.com>
Subject: Re: Hello mate.
Reply-To: “Ian Matthews” <ian@ianmaff.plus.com>

Hi mate
Sorry your so low at the moment but this really is the toughest of times. I keep saying that things will get much better with time but that seems to be a very inadequate response. Things “getting better” are going to seem a long way off for you at the moment but nevertheless the advice remains true. I think I said before that I got really down about this time when progress statrs to slow. I also had the really vivid dreams when your not sure whether things actually happened or not. I also had two outer body experiences, I was so off my head. I complained to a nurse that the bloke in the next bed was getting more favourable treatment than me and then realised the bloke I was looking at in the next bed was me –  weird. Also had a great threesome dream about two nurses and woke up to find both of them stood either side of me. I couldn’t tell them why I was smiling.

People used to say I looked well. I think it was a relative thing. They expect you to look worse. I did start to look alot better when I got out of hospital, away from infections and got good food down me.

It’s common to feel regretful/guilty for several reasons. We all feel guilty about putting everyone through it. We can’t do anything about that but remember if we had died that pain they have would be far worse. I don’t think my parents would have got over my death. When everything settles, you will still be around as before having normal family rows etc. As quads we also had the quilt of being a burden on people but you can only do your best. As a para you are going to be totally indepedent – well, changing a light bulb may be tricky. The third thing can be guilt about what we did in the accidents. Playing sports or getting into a car with someone who had a drink all increase your risk factors for a spinal injury but I did alot more stupid things than on the night I broke my neck. You can’t wrap youself in cotton wool. I always quote the story of a woman I was in hospital with who broke her back walking her dog in a park. A branch of a tree fell on her because some council workers had half cut into it and buggered off for lunch. The wind came up and snapped the branch precisely as she was walking underneath it. Your not going to protect yourself against that. It was the same for Margaret Tebbit (another contemporay of mine). She was in bed and thought she heard a bang!!!

spk soon
Ian

 

I hadn’t revisited these words of experience, until last night, reading them 4 and a half years after he’d written them. At the time, i was very much in shock still, though I sounded perfectly lucid, and was ‘ in a protective environment – a hospital for the paralysed ‘

I’d not been outside the hospital very much, and faced the real world, in my new very unreal reality. That didn’t really come until 4 months later, and it WAS terrifying – he was right, I felt like a small child, and I did for probably 2 years. I don’t think Ian had been in a coma or had a brain injury like I did, which complicated my thought process, though undoubtedly Ian’s injury was worse than mine, having broken his neck, so his upper body was also very affected. He could feel his arms and hands, unlike some ‘ high level injuries ‘ and he could hold a glass and shake hands ( albeit not firmly )

I saw Ian from time to time, as he lived in the same village as my parents, in South Wales. I always made a point of talking to him ( properly ) when I saw him – having no idea of what the future held for me, of course. I had no idea of the nightmare prospect of myself being paralysed one day – who does, after all?

Ian certainly made the most of his life, in spite of his injury,having very many loyal friends who certainly stuck by him after his accident, and went out of their way to ‘ keep him safe’ in a masculine manner. I think he was probably effectively surrounded by body guards for most moments he spent outside of his house, so Ian was pretty safe by and large. He Travelled the world, and was always included in trips away to rugby related events around the globe. His intellect was sharp, and he made up in brains what he had lost in brawn.

About 2 years ago he had a stroke,which robbed him of his speech ability to a fair degree – a cruel blow to a man already very compromised. I gather that he endured and carried on in his stoic manner, but I felt his loss so much, the unfairness being so harsh.

Last week, Ian died, aged 53, and paralysed a good 32 of those years. In Wales, it’s a measure of respect by  how many people turn up to your funeral. I don’t know for sure, but I think Ian could fill a cathedral, if there was one handy, locally.

I hope to be able to go, to Pay my last respects to a true hero.

Ian Matthews RIP.  You deserve it.

2 am.

My spasms are now regularly worse than they’ve ever been. It’s as though I have a UTI all of the time, but I don’t have one.

The upside is that I cope with them far better than I ever have. I manage to largely kinda ignore them, almost, though at night they do keep me from sleeping, so that’s an obvious problem, as I will eventually suffer the effects of sleep deprivation- though I’m not yet. I do find myself yawning though quite a lot.

I think I’ll naturally get to the point where I’m just so tired that I’ll sleep through them, so I’m not worried.

I do wish I blimmin knew why I had them. My left hamstring is in pretty much constant tremor, to the extent that my leg muscle is already visibly larger.

What a mystery this stuff all is…

Conversation..

Im seeing a band this evening with my buddy ( also a Russ ).

I texted him to confirm he was still going.

His reply ‘ I was going to say no as I am on crutches, then the irony kicked in. See you there.‘

Im not sure which one of us is now supposed to go to the bar and carry the drinks ?

Dry night ahead ?

Never a bad thing….