Category Archives: Events

You couldn’t make it up.

The things I’ve been told by people I’ve met online dating vary from the very dull to the bloody outrageous.

I suddenly remembered one today.  This lady, about my age, had seen a guy for a few dates. Outwardly respectable and normal and nice, he was middle aged and drove a nice Mercedes. They had had sex, and it was all perfectly normal and orthodox. On about the fifth date he took her back to his place and gave her a parcel. He told her to go upstairs and put on the thing in the package. Inside the plastic was fake PVC bondage outfit, barely large enough for a child, she said. There was no way she was putting it on, she decided, and started to feel worried. She heard him calling, and then heard a rustling sound, and his footsteps coming up the stairs.

He appeared in the room wearing very little and holding a large ‘ industrial type ‘  roll of sellophane.

He looked at her, still dressed in her normal clothes and asked her why she hadn’t changed. She said there was no bloody way she was putting it on, and then asked why he was holding the roll of clingfilm.

Calm as you like he said that once she was changed into the gussetless bondage outfit, and with her arms pressed to her sides,  he was going to wrap clingfilm around and around her and then lie her down..but … not to worry, because he was going to make a hole where her mouth was, and another where her bum hole was…..

When she said ‘ you’re f’ing not!’ she said the most incredible thing was that he asked with a completely straight expression ‘ why not?’

I made a mental note to myself that however kinky I thought I was, I’m just a bloody beginner, obviously…

The next time you’re in Sainsbury’s and you see a nerdy looking chap buying clingfilm, stop and ask yourself why….?!

All white now.

Let it snow… so nice and Christmas’y   Loads of messages from people with pictures of snow covered roads. How lovely !

Except for me, it’s a blimmin complication I can do without. No way I’d trust the iBot in the snow, and the Triride wheel slides all over the place when it rains, never mind when it snows.

Obviously I’ll still chance it and go out… what’s the worst that can happen…..? Tipping over? Death? All fine with me, obviously. I can’t let a little thing like a fatal skid in front of a bus confine  me to the flat !? Where would be the fun in that ??

Ill let you know how it goes…

Last night Pia and I saw Bananarama ! They all still look hot from a distance; can’t comment on close up though. Anyway, the audience was there to have a good time. Bananarama isn’t exactly my  thing, but hey, it was a blast from the past. Growing up in South Wales, it wasn’t that ‘ acceptable ‘ for a lad to say he was a fan of Bananarama, even if you did actually like them it was form to say that you didn’t – they were very much a girl’s thing.  Last night the audience was 50/50 Male to female, contrasted with the Sleeper gig where it was 80/20 Male crowd  – think it’s  a sexual fantasy thing, but only my theory obviously..

 

Sent to me by Pia…

Life in the Fast Lane with Russell Dawkins –  a friends perspective….

Accompanying Russ to anything really – is always quite eventful, but for some reason gigs at night, is always an interesting one!

So, yesterday started off with the usual delay at the turnstiles at Hammersmith station as the ticket inspector asks us where we are going … we recognise him as we’ve met him before (and you could say – is slightly special needs and often adds 20 minutes to our journey time)… and he does his usual – asking Russ what accessible stations he is intending to use , then repeating it back to Russ about 5 times before going off somewhere and then usually returning a good ten minutes later, and informing us that the accessible stations have lifts working. Russ is always very patient at this stage, however, yesterday, instead of getting the thumbs up, we were told some lift somewhere was not working and that we would have to use another station across the road.

Now, for most people that advice may have been slightly frustrating/annoying, but to Russ, any advice such as this – is seen as his proposed plan being changed, and boy, does he like to stick to his plan!

Anyway, we get on a train and all is good until we change trains and the approaching train is jam packed and rammed full of commuters. I look at Russ and say – ‘we are sooooo not getting on this train!’.
Bizarrely, Russ interprets this as meaning- position yourself in front of the train door and once the door opens, give it full throttle and get yourself into that Mofo spot that is designated to wheelchairs, and don’t worry about any passengers you may knock flying in the process!

I follow behind him, slightly flabbergasted by what my friend has just achieved, and look at him, and he smiles. ‘That worked’ I say, feeling quite puzzled by the amount of space we have around us.

The RussPlan continues to have its moments when he hasn’t quite got his locations accurate and we end up 4 miles away from the venue. I suggest running, as to be honest, I’m now used to taking to running alongside him now as he appears to forget his Triride can be set at 4mph, but on these occasions prefers to go at 6-7mph.

At this point, and under instruction to jump on, I then find myself sitting sidesaddle on his lap, doing nearly 20mph, and after more instructions including: looking out for cars behind us, whilst holding up Google maps on my phone in front of us, and then being told to keep one leg off him as it pushes his leg into the tyre (which he obviously can’t feel)… the journey is far from comfortable, and I can only describe it as feeling all tangled up!
As per usual, there is a comical moment when Russ starts faffing about with something and I lean forward and accidentally hit the throttle.
God knows what this journey looks like to passers by, and given that we are stone cold sober I spend the entire journey reciting what I’m going to say if we get stopped by the police, half the time out loud, leading Russ to tell me to ‘ shut the f*** up!’ so that he can ‘ listen to the road ‘?!

Anyway, we made it, Russ is given yet more inaccurate advice by staff members – but finally relaxed, we manage to have a bloody brilliant time at the gig and get to shout along to Liam Gallagher sing Wonderwall.

Unfortunately, as documented by Russ, the journey home is far worse than the one there, but still has it’s comical moments – including a Rastafarian passer-by who took it upon himself to try and get us on a bus, which to be fair was really never going to happen as the ramp was broken. His determination was impressive though, and after getting frustrated with the bus driver who thoughtlessly positioned the accessible non working ramp – right in front of a bin. The guy actually managed to somehow move the bin?!

Anyway, after a long night and understandably frustrated and cold, Russ had visibly plummeted and eventually makes his own way home. Never the best ending to an evening, knowing what Russ’s plummeting has led to in the past 🙁

What Russ omitted from his account, was that it was my wanting to deviate from his plan – (and not fancying the thought of another 4 mile journey all tangled up, after having consumed quite a lot of alcohol) that buggered up the journey home.

What I’ve learnt from these situations with Russ is: irrespective of what you think and feel about Russ’s plan, it’s best not to suggest an alternative, even when his plan may seem slightly flawed!
Aahh… and equally as important- is to keep highlighting the comical and happy parts of the evening… as there are always loads 🙂

Pia x

Thursday night/ Friday morning.

Getting to last night’s venue proved far more arduous than I could have predicted. I remember going there as an able bodied person to see a gig or 3, and the packed and crowded nature of it was a great sensation. The difference that those elements make now are only negative when you’re at child height and the staff are very ineffective at getting you through crowds. Normally at venues there is some side door that you go through – a fire escape or something. At Alexandra Palace there is no route provided, so it’s a total bun fight, and the guy in the chair is handicapped ( literally ).

The distance from the closest accessible tube line proved to be 4 Miles, and with a lot of very steep hills, with Pia and I using a combination of her running / her hitching a lift on my sensation free lap. The venue itself is at the top of a hill, and everyone has to go pretty much the same way. On thé way there I got stuck on a path and 2 people had to push me up a steep slope and over a kerb. On the way back, and  down the hill, my chair and Triride Combi tipped over whilst getting onto a pavement. It was at low speed so no real damage done,  as far as I can tell. I did land heavily on my right side but  other than a painful elbow, I think I’m ok, at least physically. Mentally the effects of tipping out are longer lasting, as it reinforces your incapacity to do anything about it. Four pissed blokes and Pia got my chair upright, with me in it.

The battle to get back had barely started. Thousands of people trying to get away at the same time makes a taxi very unlikely, so I opted for a bus to get me halfway back and then ‘ take it from there’.  I rely totally on my phone for bus times/ tube trains and navigation. I have to carry a back up power pack to recharge my phone all of the time, as I’m so dependent on the things that it enables me to do. To my distress, my carer ‘ had  forgotten ‘ to charge the back up charger, even though it’s a task that is absolutely her responsibility, and has been for weeks. So I have no phone navigation charge and I’m 10 miles from home, in an area that I don’t really know. I do however now carry a spare fully charged Triride battery so the mileage wasn’t the issue, if I had to wheel it back.

It was VERY cold last night, and the cold seeps into me from my feet upwards, but I can only tell once my core temperature has started to drop.

Getting a bus to stop and put the ramp down isn’t a job for a meek person in a throng of people – it needs someone to be forceful, to wave their arms and shout to the driver that a guy in a chair needs to get on. If the driver can’t hear the request then there’s a fair chance that they’ll ignore me at the bus stop. My eventual tactic was to just wheelchair in front of an oncoming bus and stay in the middle of the road, Indicating that I wanted to get on. That did eventually work and we got to Chalk Farm, and then got another bus to Green Park. From there it should be straightforward, but it wasn’t. The driver kept parking the door ramp in the wrong place – in front of bins or a lamppost, and the ramp won’t then even come down, and if it does I can’t get on anyway… because I can’t drive through a lamppost.

After 10 Minutes and 2 failed buses, I said goodbye to Pia ( who had bus and tube options that I don’t really, and anyway lives several miles from where I do  ) and decided to try my luck on the crowded A roads through London.

It probably took half an hour at least, but I was so cold that I wasn’t thinking about anything other than avoiding lorries to be honest, though even that, after the emotional day I’d had, wasn’t a bad outcome – quick end and all that. I don’t fear death at all – as I’ve written before it doesn’t matter to me, and matters even less when the odds against me seem to pile up higher and higher, as they seemed to last night.

The cold numbing effects have prevented me having a clear memory of getting back, but I know I adopted my usual tactic of recalling a time when I was much colder and survived ( last night it was a time in the Himalayas when I probably should have died of hypothermia, but didn’t ). On plenty of other kayak occasions I’ve been in extreme cold adversity situations and got through them, so I put my mind in that zone and ignore the suffering, and just focus on the objective.

I can’t remember arriving at home, or Rosanna letting me in, but I remember now that it was 2 am and I was shivering.

Anyway i made it. I’m not dead, and Liam Gallagher was his usual self – a bit of an uneducated and arrogant twat – but everyone there loves him anyway.. and forgives him completely.

Theres always a ‘ who was Oasis ‘ difference in opinion, but for me it was Liam, not so much Noel.  Liam fans are définately more ‘ hardcore ‘, thé fans there last night reacting to him as though he was a god, if not God himself ( depending on your religion, obviously ).

Would i go to the same venue again ? Well I will, cos I have tickets for another gig in the spring, but  I’d definitely go there far earlier and get in, BEFORE the thousands appeared. This disabled access stuff is all a learning curve, and until you know a place, you just don’t know a place. Thankfully I was able to navigate my way back via road signs, didn’t end up on thé Westway this time, and didn’t get crushed by an HGV, though I’m sure there were numerous close shaves.

I think that going to a Pantomime, just a mile away tonight is probably what I need, rather than a repeat of last night? I’m sure Cressida will excel, along with the rest of the amateur ( but great ) cast. I’ll see Toby there, and maybe sip one mulled wine, if they have any, and then get back and take a sleeping tablet. I have archery in the morning, and this time need to be fully conscious when I get there, and not like last week when I’d managed not to sleep at all, having not taken a sleeping tablet and assuming I’d drop off after getting back from Kasabian at the O2, very late, but I didn’t. My aim was all over the place, and really I’m not surprised.

Ok, so irrigation now done, I’ll get to the gym soon, to do what I can. Rosanna cooked something, after hér invaluable help with the water system, which I am unable to do by myself, as you need to be able to stand up to place thé réservoir high enough and fill it up. Hands up who wants a video of the procedure…. happy to post one, in all its glamour….

 

Thursday.

After spending 3 hours overall on the complicated and unpredictable procedure of self colonic irrigation, with all the risks of leaks and floods, i eventually got to the gym, where ive paused to write this.

Tonight I go with Pia to a gig in Alexandra Palace, which is quite a way from here.

Today, earlier I was questioned by someone as to ‘ did I really need that much help from a carer?’

I made a list of things I can’t do, as they very quickly occurred to me.

To go to a gig isn’t quite as easy as it sounds. For me, firstly I need someone there to help me at all times.

I have to carefully plan the route options. Today I looked at the train routes and then travelled by wheelchair to Hammersmith, to ask them if the station lifts in the various stations were working. On the way there my new Triride battery flew off and I almost crashed on a main road trying to avoid my own large battery in the road. A passer by stopped to pick it up and put it back on for me, or I couldn’t have done it…

Later I’ll meet Pia and get 3 trains, then a mile on the Triride on thé pavements after that. If it rains, I’ll get VERY wet.  At the gig, I’ll rely totally on the help of others to do pretty much everything, and on the way back I’ll rely on the helpfulness of the London Underground staff and network.

My list then –

The whole point is that I NEED someone there all of the time
I can’t get into or out of bed.
I can’t wash myself.
I can’t get into or out of the flat, without someone opening the doors.
I can’t attach the Triride.
I can’t transfer to the ibot.
I can’t reach the battery charger to charge the ibot.
I can’t reach my feet to tie up the strap.
I can’t fix my regular punctures, and need someone to take the chair to the bike shop.
I can’t get in or out of the car.
I can’t travel alone on a bus or tube, as time and time again getting in and out of buses and trains involves a step.

Without live in help  I’d have to get assistance at exactly the same times of day every day –  I’d completely lose the right to wake later, or earlier, and come back later or earlier ? Is that how you run your life – to the same set times every day?

If I travel anywhere and want to stay, do I ask the host there to wash and dress me, and deal with my colostomy bag and irrigation system ?

If I drop something, I can’t reach the floor.
I can’t clean, as I can’t reach.
I can’t use toxic fluids for fear of tipping them over myself.
I can’t cut my toenails.

I can’t vacuum
I can’t wash windows.
I can’t carry shopping.
I can’t answer the door fast enough if someone comes, as it takes me ages!
I can’t reach things that are high up, or low down.
In the night, if I’m thirsty i can’t get water.
If my stoma bursts, or my catheter I’m covered in shit or piss, and totally unable to clean up.
If there’s a fire, I burn to death in my bed.
If I drop my phone, i can’t retrieve it.
I can’t charge my Triride.
I can’t put a coat on myself.

When I’m out I can’t open doors.
I can’t get into toilets.
I can’t speak to the driver on buses.
I can’t put xmas lights on trees.
I can’t hang my coat up
I can’t use the washing machine
Or tumble dryer
I can’t pump up my tires
I can’t get on the sofa or off
I can’t change my sheets
I can’t put on a duvet cover
I can’t iron
I can’t get into a bath or shower
I can’t transfer to my standing chair
I can’t carry drinks in a bar.
I can’t get through crowds, without emotional distress.
I can’t look behind me when I’m at crossings.
I can’t press the button at crossings, often.
I can’t empty my urine bag at gigs.
I can’t get my lights on and off my chair to charge them.
I can’t reach things in the fridge
I can’t change bulbs
I can’t decorate
I can’t garden and sweep up.
I can’t reach snails on the foliage
I can’t change the hosepipe
I can’t get into my arm bike
I can’t get into a Sitski
I can’t load a car
I can’t fill my car with petrol
I can’t get out if I break down
I can’t stop at a service station
I can’t get to the bin area here.
I can’t hang a picture
I can’t use a drill safely
I can’t carry hot drinks
I can’t put my legs onto a chair to stretch them.
I can’t massage my feet.
I can’t take my shoes off if my pee bag leaks over them
I can’t hold a nail and a hammer at the same time
I can’t get into most shops without help.
I can’t get a haircut without help.
I can’t reach lots of sockets to plug things in
I can’t lift anything heavy
I can’t put cream onto my own back.
I can’t reset the TV system
I can’t load DVD’s
I can’t reach into storage cupboards
I can’t take things up or down stairs.
I can’t carry things back from a school xmas fair.
I am a danger to myself with hot plates and fluids
I can’t change a Catheter in an emergency without someone calm assisting.

A carer can’t be just a regular person. A Carer needs to give up hér own life to be there to help me. They have to be qualified and be insured. If they mess up, then they can find themselves liable. They can’t have a social life, or stay out for the night in case I need them. They have to be contactable ALL of the time. They have to tolerate the frustration of the person that they care for, and not take things personally.

I can’t just rely on the generosity of others to live my life according to their occasional availability. For every hour that a mate helps me, my carer is there for 3-4 hours.

 

I read the list again an hour later, and I cried tears at my helplessness. To be like this, for me, is so incredibly dissatisfying. To be questioned as to whether I really need much assistance is just insensitive and demeaning.

Before my injury, if i thought I could do something myself, I wouldn’t dream of asking for help. Now, it’s hard to think of things that I CAN do independently.

But i make as little fuss as possible, and say thank you an awful lot.

The week that was.

Kasabian, then Sleeper, then Jamiroquai. Busy gig weekend then ?!

Kasabian 10/10

Sleeper 9/10

Jamiroquai 5/10 – well it’s the same track with different lyrics every time, isn’t it??

Tonight I saw Stealing Dan, a tribute band, who musically were probably as good as any of the above, but to an audience of 30 people in a pub….

My new Triride battery arrived today – it’s a thousand pounds for a battery… a hell of a lot undoubtedly, but meaning that I can go twice as far without the risk of getting stuck, if I take a second fully charged battery. As my options dry up fast once my battery runs out, to me that’s a massive deal, and huge reassurance. Arguably I need a third battery.

At the O2 on Sunday, Pia and I tried to get into a lift. About 12 or so 25-30 yr olds had leapt in before us, leaving me and another lady in a wheelchair outside the lift. Thé able bodied peeps were completely oblivious to the needs of the wheelchair users that REALLY COULDNT use the nearby stairs of escalators.

Not being the shrinking violet type, i just headed into the lift in the upright iBot, scattering those before me ( politely ….)   Pia however was far more vociferous, asking the people to consider the wheelchair lady, and telling them to get out. The responses were actually all from the women, who came Back with ‘ oooh, get you with the attitude ‘ kinda expressions. I said nothing at all, tho edged my IBot more forward.

Eventually they all got out ( with muttering ) and let the other paralysed person use the lift.

Personally i think it’s wrong that people behave in that way, but I understand that it’s totally not illegal for able bodied to use elevators. I

The public arguably has a lot to learn…?

Today.

My buddy, Adam T invited me to his Xmas party… the one his business has, 30 years after he started it in his bedroom, just out of school… and as it was when I met him. Now it’s big, and it’s successful – an entrepreneur in a business dominated by HUGE companies.

Wow, what a treat, on Park Lane. He had some brilliant people on stage to entertain his guests/clients/employees/Friends.  Never been to anything quite like it?!

Next time you want a mobile Phone Company with a difference, look up Adam Phones…

Thank you for an amazing day, Adam

I go from here, with Rosanna, to see Kasabian at The O2… gotta keep on keepin’ on… right?

Home

Thanks,  Adam.

Also great to meet up with Kevla, who I had no idea was going to be there.

Me n Kevla…

Ahhh the glamour of my sh**.

Prior to going to the Tower of London with my mother, I spent 3 hours in hospital being taught how to self irrigate my stoma …

That involves sticking a cone end into your hole and letting a litre of water flow in, and then being prepared for the same litre, plus ‘solids’ to come rushing out. In practice it kinda rushes out in bursts, rather than all at once. I have to pre attach a poop shute to myself so that it doesn’t pebbledash the wall in front of me, and goes into the bog instead.

Obviously the idea is that because I’ve done this, nothing then comes out until you do the procedure again 24 hours later in your bathroom. In practice, nothing did come out into my ‘bag’ for about 12 hours, but then did. I suppose I wasn’t properly flushed after the first go yesterday, then.

As i type I’m doing it again, being careful not to drop this phone into the bog. Whilst IPhones are now waterproof, you still don’t want to get them covered in shite, if avoidable…

Thanks Mum, for coming down, and thanks Dad for delivering her and collecting her. I think that arrangement was probably sensible as my Mum doesn’t have any inbuilt sense of direction, so isn’t guaranteed to end up where she is supposed to go.

She does have other qualities though, which compensate.

And also the Italian barman on the 69th floor of The Shard tried to proposition her. There’s got to be a lot of inappropriate jokes that could accompany that occurrence, but I’m not going to make any of them – at least not in this diary.