Living is for those who don’t make mistakes

Life is not for me. I’ve learnt the hard way and now l glve in. I have faced somethlng i can’t handle. I tried and i failed. I’m sorry to anyone who thought i could.

For crying out loud...

Only when you have to repeat yourself till you’re understood do you recognise the situation you’re in. It’s hopeless. And then, to top it all, you get denied a blueberry yoghurt in case you choke on it. You feel like crying. When will this nightmare end? I take my responsibilies seriously though. I have to if Mandy and Jon qre to survive. If it wasn’t for them i’d give in.

if this was a game of chess it’d be checkmate. The girl opposite you has a smug smile of satisfaction. All i inow is that if i can’t eat the food iwant then why can’t i go back to the way things used to be when i was at Leamington Spa hospital?

Home is where the heart is....

When i first arrived at CERU i was fed by wire. When i left i was actually eating. These days i wish i was drip fed again because having to eat the same food day after day isn’t much fun. The hospital at Leamington Spa became my home from home for the whole nine whole months that i was there for. That’s a long time. The day i left there is a day i felt unbelievably sad. The nurses were my family. They were all i’d known for nine months of my life. I had visits from my real family, but the nurses were my adopted family.

Returning to Hinckley was a real culture shock for me. It was a real dump of a place to live. Why on earth did we live here? I began to question my ability as a parent. When we were last here i could walk and talk. People began to look and stare at me. Hinckley had changed so much in the nine months that i had been away. Coming from a place where everybody understood what you said to a place where nobody did, made you question your very existance.

Not being able to talk

The BBC are showing a video of someone who suffers from a locked in syndrome. It tells the story of a man who got the syndrome when he was just 12 years old. He is now married and has a baby on the way. I don’t know how that happened. Neither does he. It’s a strange story of someone who found the ability to communicate. His parents didn’t know he was in there, so it was amazing fot them that he was.

He has written a book about his life as a disabled person but i’m in no mad rush to read it. I’ve experienced enough of life to last me a forever. It’s definitely an uphill struggle. There’s no doubt about that. My story is one of being unable to walk. It’s a struggle to learn to get used to it. How do you cope with it? A big part of your life is taken away from you when you lose your legs. I used to think i could walk but soon found i couldn’t when i jumped out of my wheelchair and found that i was unable to.

Raising my good arm so that i can drink is also a problem. I don’t know why but i can’t raise it in the aternoon. I lose all the strength to do it so i have to drink as much as i can in the morning to make up for it. I just drink water. That’s all i drink. Caffeine keeps me awake at night so i don’t drink it through choice.
i understand what this man is going through, but i see people who are having a much harder time of it.

They can’t choose anything not even what they’d like to do let alone have sex with a woman and bring a new life into the world.

The world’s loneliest man

The newspaper’s reffered to him as the world’s loneliest man. I was reading about him. He lives in South America and was cutting down trees. He is a protected species and left to be on his own. But how did he end up like this? I know exactly how he feels because i’m pretty much on my own too. I hate to admit iI but i know exactly how he feels and how he ended up where he has. It is the same for me. If only i could turn back time i would change everything and start again.

One thing i’d like to know about him is: who does he turn fo if he needs help. What happens if he has a stroke, for instance? He’d be buggered! And what if he ended up like me? Chopping down trees and living without anyone nagging at you sounds wonderful but sooner or later you’d rely on someone else to help you out.

I close my eyes....

I spend most of the day with my eyes closed. I’m not tired, in fact i’m very much awake. It feels so natural to me. To other people it doesn’t. They keep asking me if i’m ok. It’s probably as a result of my condition that i’m like this. I was never like this before the stroke. Now, i am. I quite happily listen to my ipad and close my eyes. Keeping them open is the biggest burden i face during the day. I keep them open just to see where i’m going. I suppose i must be a vegetable. If not now, then i will be in the future.

You feel like you should suffer, but instead you just get a feeling of “it’ll be alright”. Oh, there’s pain and you feel it. You definitely feel it, but the pain has been with me for so long now that i’m used to it. I know that nothing will ever change as far as that’s concerned. I don’t believe we are ‘lucky’ to be alive. Mine is a different feeling altogether.

put anybody in my position and ask them if they feel lucky...

Everybody’s on the make except you.....

Latest statistics show that, out of 10 crimes committed in this country, only 1 is ever solved. That’s an astonishing figure to admit to. They didn’t even admit to it because it was actually the result of a survey that was carried out. That doesn’t give you much faith in the law because crime obviously DOES pay. The next time someone tells you to do something illegal because you won’t get caught - do it. This dude knows what he’s talking about.

Even MPs who fiddle their expenses will be given anonimity. What is the world coming to you might be thinking to yourself. Everybody’s on the make except you.

The bully

i have my own bully now. It’s quite funny that neither of my legs work and only one arm does yet i still get a bully. Nobody else is scared of her. Neither am i.

The struggle...

Sometimes i really doubt i have the ability to get things done. Jonny has to do something but he does nothing. He’s an energy vampire. The term energy vampire is something i’ve got from Julia. It describes Jonny. He lets people do things for him. Eventually it will destroy them. Only when he realises that he needs to do things for himself will his true self be realised. I don’t think i’m a bad parent. Just an exhausted one.

I try and do what i think is best. Very often it’s not good enough. i try and talk to a carer but what’s the point when “Can i have a drink?” becomes something completely different and i’m holding a toothbrush. Getting a voice machine is ok but i can’t take it everywhere with me. If only i could.

Lucky to be alive?

I don’t know what is wrong with me. I just know that something is. Being constantly in this wheelchair isn’t doing me any good, I just know i need a change of scenery. I spend too much time in floods of tears and it’s wearing me out. Everything gets too emotional for me and i find it hard to cope. They say i’m ‘lucky’ to be alive. Some kind of ‘lucky’ is this. I’d like to see the alternative before i decide on that.

Having a brain injury is something you don’t ever recover from. It gives you a different perspective on what is happening. It’s not until you suffer from one that you can really make a judgement about life. Are you really ‘lucky’ to be living like this? I don’t think so. I only have one one arm that works and i can’t raise my head without feeling giddy. And i’m lucky? Don’t make me laugh.

as brain injury comes in all shapes and sizes. Firstly there is the man who will never talk but finds his way across the room. Secondly, there is the man who CAN talk but has no sense of reasoning and then there’s me. I can read but that’s about all i can do. I don’t want someone who comes along and speaks for me. I’m not THAT disabled that i have to do that.

Doing what’s right....

If you’re a young person reading this then don’t don’t be afraid to take the advice of an old-timer like me. When i was a kid i never had any advice given to me whatsoever. It meant i made a lot of mistakes. More than i needed to. If only my dad had felt the need to tell me what life would be like i could have done something about it. As it is he’s ruined it. I’ve nothing left to live for. Think hard. When you’re a kid life soon changes. A lot quicker than you think. Once you’ve done something, it’s normally too late to change your mind so make the right decision, and make it now.

i really don’t know what’s going to happen in the future. If only i did. Life would be much easier if you know what was going to happen. I haven’t got much longer left so the future doesn’t really matter to me. When i was a kid any advice was eagerly looked upon. Nowadays, it is looked on by the younger generation as something quite laughable. They think they know what’s best. Maybe they do. I just wish when i was younger that i had someone who was looking out for my best interests. I hated having to make decisions that mattered.

England are knocked out of the Kick-a-ball trophy..

England got knocked out of the kick-a-ball trophy this week. I wasn’t really bothered to be honest. A few days earlier a tv reporter interviewed an 11 year old girl. It was quite funny because she didnt seem to know or care what football is and he looked as though he didn’t either. You just couldn’t make it up. But England always fail at winning the tournament they are in because they don’t know who the opposition are most of the time. They say they do, but they don’t really.

They’re too bothered about the next game. They don’t concentrate on who they’re playing now. There’s a big circus of triviality that springs up whenever England could win something big. And we all want to be a part of it. And then we lose. It’s sad, really. I can’t see a change ever happening. Kick-a-ball will still be the same now as it is when i’m long gone. The girl of 11 is now a grandmother of 3. They are all given England flags and told to smile at the camera.

Everyone knows that England are going to lose but, hope they’ll win. They couldn’t have an easier draw than they’ve got - Italy and Holland didn’t even qualify.

That feeling...

That photograph pretty much sums up the way i’m feeling today. It’s no good asking me why i’m feeling this way. I don’t know. It’s like telling a fat kid that he can’t have any cake at Christmas. Or if you’re politically correct, the overweight kid.
it would be great if i could be happy every day and full of life too, but it aint gonna be like that. I wish it was.
You can be happy one minute, and then the next you just change.

It doesn’t help that you can’t walk. It goes much deeper than that though, but I’ve always had it.
Being disabled just takes the biscuit.
You often hear people listen to you crying and they try to find out why you’re doing it. They forget that there isn’t always a reason to it. That’s just the way you are. They ask you if you want to talk about it. Not forgetting that you can’t talk.Either that or you don’t want to.

Trying to explain yourself to someone who doesn’t feel the same as you is like trying to explain the difference between black and white. Some people will know what i’m talking about but others won’t.

Going to hospital when I didn’t need to....

When you say something for the fifth time to try and be understood, and they turn around and say to you “how come you’re not smiling?”. Only then do you feel like crying. I was taken to hospital because i’d eaten too many cheese sandwiches. Instead of letting me get a good night’s sleep they rushed me off to Leicester hospital, gave me an injection and i didn’t get any sleep. I didn’t get any water either. They didn’t understand a word i said. I was not happy.

Kick-a-ball...

Does it really matter who the best team in the world are?

We live in a world that trivialises kick-a-ball. When are we going to get our priorities right? There are far more important things than kicking a leather ball about. By ‘more’ important things i mean life or death and you can’t get more important than that. Kicking a ball and then being idolised for doing so is so wrong. You tell some people and they look at you very strangely. people will die in Thailand and all that some are bothered about whether Team ‘a’ beats team ‘b’. It really is a world gone mad.

What does the future hold....

I don’t know what’ll happen in the future. Come to think of it i don’t know of anyone that does. I just know that if i survive what life throws at me, i’ll still be disabled. I’ve more or less accepted the fact that life will be just as painful as it has been. I’ve made mistakes and i can’t put right any of that. I’m on my last lap. I know that. This is it for me.

The days when i could walk have long gone. I don’t feel sorry for myself nor do i feel optimism about the future. I remember walking seven miles to where my mate Chris lived confess that i had no idea what the future held. I see now that that is all i should have been thinking about. If i pass on any message it is precisely that. Think about the future and what could happen.

i know that if i had done that it could have averted what has happened. Maybe life could have been a hell of a lot better. As it is i can only think of what has happened. I should have done better with the chances i had. It could have been a great future. A future ruined by Jon and the thugs he let shape if for him. I know now what i should have done.

it’s too late when you can’t do anything about it. If only i had a time machine.

You’ve heard of the Kray brothers....

My uncles Dick and Harold (brothers on my mother’s side) were people not to be messed with. I often wish somebody had written a book about them. The aura about them was legendary. A book would have been a best seller and I’d have loved it if i had read it. They could’ve made a film about it too. My uncle Harold made the roll-up cigarette as famous as what it was. Just a look from either of them meant you were facing a beating if you missed the next bus home.

If they wanted a chip, you felt honoured that it was you they chose. Hopefully, they’d remember you and
that that would be all it took to let them know that you were a friend.

Food for thought....

Eating is ok because i get to choose what i have. Today, i had mashed potato, cauliflower and mashed beetroot. It tasted as awful as it sounds but i was determined to eat it all. And i did. I don’t have any problem with that. The more horrible the meal, the better i like it. I’d be good in the jungle because i’d eat anything.. people are too fussy these days.

i’m trying to think of my next meal. You won’t get it in McDonalds that’s for sure.
Being disabled like i am has made me take the risks that i do. Nothing is too risky. I’ve been throgh some things you’re just thankful somebody else has to endure.

Now, that’s what I call a heatwave....

What the rest of the world is going through i don’t know but here in the U.K. we’re having a heatwave at the moment. I spend all of my days indoors. I only know about it because my wife tells me how hot it is. I don’t have a duvet at night which is a sign i have to tell me why they are playing music so loud. It’s funny how that happens. They just don’t care. Music gets turned up and all the doors are opened to make sure you can hear it.

i don’t particularly enjoy it. And why should i? There are flies everywhere. Who loves flies? Nobody does.
They get all over your food when you least expect it. Then there are warm sandwiches. The inside is so warm that it has melted. The margarine is full of dead flies. Oh what joy. Give me winter, anytime.

What I find enjoyable...

I saw a tv programme last night that made fun of disabled people. It was done in such a way that the disabled would find it funny. I had to laugh at it. Then they tackled racism. The butt of the joke wasn’t black people. It was the situation black people can find themselves in. If you’re disabled you’ll know how it feels when able-bodied people make a fuss of how politically correct they can be. That’s what last night’s programme was about. All we want is to be treated like a normal person is treated.. On facebook, i get abused if i step out of line or get too big for my boots, and i love it.

i love the banter you can get with football fans. It doesn’t matter that you can’t walk.