Loneliness, love and life affirming lies

Loneliness can form on many different ways, sometimes it’s hard to realise that you are lonely and once you do, it can be quite a sad state that in its depths, there seems no way out.

I sometimes get lonely, my life consists of being surrounded by people who like me and appreciate me and yet I sometimes get a yerning for more.

It’s no secret that my love life has been none existent up til know, I’ve never been on the receiving end of the kind of closeness that comes with an affection that is chosen and not an instinct. It’s this that makes me feel lonely the most.

It’s never a constant feeling, and sometimes I think giving it a label sounds far more dramatic than it is. It’s more like a feeling of being ‘fed up’, when you go out and all your mates are in couple or that feeling of disappointment when you have another Saturday night in watching crap telly instead of going out somewhere fancy, with someone you fancy.

My frustration with love led me to signing up to Internet Dating in a pit of despair. I talked myself into it over a month, telling myself, that’s it’s far better to be pro active, than it is to do nothing. Nothing happens on its own, and in this case, my love life was like a frightened puppy that needed coaxing out from behind the sofa.

I struggled for a while, deciding or not whether I should mention that my wheelchair is included in the package, straight away I’m put at the bottom of the barrel with the fat, Middle aged single parent offerings, the dregs of the dating world.

A month, six months a year and 18 months went by and nothing no interest, not a single fuck was given by anyone.

More disheartening than the feeling of loneliness I was trying to shift by a mile. I considered on many an occasion to delete the profile and never speak of it again, but something always stopped me. 

I remember reading an article that said the attitudes surrounding disability, love and relationships where improving with the amount of people who admitted they would consider a relationship with some with a disability had risen in recent years.
I have yet to experience this statistic, but never the less it gave me hope. So I stayed on the site a bit longer, in what I can only be described as a loveless marriage, with one of us refusing to give up hope.

I’ve deleted my Online Dating profile.
I’m not saying I’ve given up all hope, nor am I saying that there aren’t things happening that may lead to more in the future but these opportunities haven’t come from the Online Dating site. It’s come from my own doing.

The bullying tactics to make you stay on these sites are horrendous. They are designed to make you feel like a failure, to play on that put of despair slump you experience when the loneliness really takes grip.

They make your mind think that you can’t survive without them, in exactly the same way diets do, promising you a better life if you stick with it, hoping you swallow the idea that the reason you’ve failed is because your not doing something right.

Truth is, Online Dating is shallow, it hasn’t delivered in it’s life affirming improvement strategy  and if you’re not quite the norm people don’t want to know, you’re personality means nothing..

It certainly, hasn’t enhanced my life boosted my confidence, it’s other things, other people who have made me realise that actually I shouldn’t ever class myself as the dregs of the dating world

I’ve realised that for me finding love is, as frustrating as it may be, a long game, I need to be friends first and if anything else happens because of the time we’ve gotten to know each other. Then, well that’s amazing.

It’ll happen. Eventually..

And if it doesn’t? It isn’t the end of the world. 

Thanks to you…

Children in Need has always been a charity close to my heart, partly because, for a while, you could have considered me one.

I have always been very self aware of the fact that even though I have a disability, I am extremely lucky, my condition isn’t life limiting, I am healthy, happy and have a warm bed to sleep in, a Family that love me and Friends who accept me for who I am, without an ounce of pity or because they feel sorry for me.

It’s because of this that I was the first person to volunteer to fundraise for Children in Need when I was at School and over the years raised thousands. Not because I wanted the praise but because I believe that everyone should have the same opportunities as able bodied people.
Children in Need facilitate these opportunities, in many different guises, letting kids be kids and giving them the opportunity to forget about thier issues.  At least, for a while.

When I was younger, my school received a grant from Pudsey and his pals for a set of adapted bikes. Until then, I’d never riden a bike, and was always jealous of the kids who’d had bikes for Christmas.

These bikes meant that I could ride a bike, and I can remember one summer bringing the bike home for six weeks, my little wise legs struggling to work the pedals and finding it so hard, but at the same time feeling so happy. I felt like a normal kid sat on that bike.

I have also been fortunate enough to see what it’s like on the other side of the charity too, working, for a while in the Birmingham appeal office at Children in Need. Speaking to the funded charities made me feel proud of the generosity that comes from the general public and not only that but the money raised really does make a difference to kids like me.

So from the ten year old me, she just wants to say thank you, for letting me experience the feeling of a first bike ride, like every kid should experience.

And from the adult me,  who just wants to say thank you for caring enough to donate your cash in these financially hard times.

Even the tinest donations, can make the biggest, life changing differences.

THE C WORD…

I hate the term Cerebral Palsy. It makes me sound brain dead. The Medical term for my condition is ‘Spastic Diepleagia Cerebral Palsy.  I just ooze sexiness, don’t I?

 In lay mans terms, it means that my condition effects two of my four limbs most severely in everyday terms this means I can’t walk and I am unable to do fiddly jobs, buttons, shoelaces and the frequent wrap rage are regular hurdles.

 Maybe it was watching me struggle a bit made people in the medical profession want to ‘help’ me, as a kid they were all obsessed with the fact that they thought the could fix my mobility problems, or at least ease them.

 Appointment after appointment Doctors would poke, prod, and ponder followed by a length discussions about my options to elevate my difficulties.

At a young age I used a walking frame occasionally. I fondly remember walking down empty isles in the supermarket under my own leg powered steam, but it was a very painful exhausting process. Snails went faster than me.  I’d had everything suggested at some point or another, botox injections to relive my tight muscles, different wheelchairs or walking aids  to help my posture, operations etc. Sadly they never suggested swimming with Dolphins as a cure, something that one of my classmates whole hardheartedly believed would work, only to realize after saving up and having the experience didn’t make you walk miraculously.

That said we did try the odd treatment, I had both legs in plaster cast with my feet set at the correct angle, the idea of this being that I would have more of a natural gate when the casts came of six weeks later. In theory the tendons being manipulated in such a way would almost create muscle memory.

Usually this treatment takes one casting, in my case it took about five. It was uncomfortable, distressing and painful and that was without the logistical problems of showering dressing and mobility that comes when you have the unfortunate experience of being in a cast.

The multipule casts I had were either holding my foot incorrectly, too painful to bare, too loose, too tight, or as in one case fell off my leg during the night resulting in me finding it in the morning and taking it in, under my arm the next day. 

Despite these failed attempts, one was successful and to be honest the results were good, for a moth or so my walking on a frame was more relaxed and felt easier and less laborious at least, but this didn’t last and a few weeks later my legs stiffened and we were back to square one.

We decided not to repeat this again, after the numerous failed attempts the pay off was so little to me it wasn’t worth the discomfort. 

So the mention of surgery was constant, and to a young girl, this was frightnening, not because of the thought of an operation was disturbing, but because Doctors made me feel like I wasn’t ‘normal’,  like I was broken and needed to be fixed. I was a very happy child, at that age my disability was a confusing, I didn’t understand why I couldn’t walk. so having someone who was a Doctor talking about operations, made me ask questions like ‘What’s wrong me?’  I felt fine. ‘Was I poorly? ‘.

I’m happy to say that Mum and Dad resisted the pressure to agree to medical intervention, they always said that I should be the one to make a decision about what happens to my body. They didn’t want to fix me, but agreed that they’d try and make my life a little bit easier in the long run. It was quite a brave decision in my eyes, after all when they were given these options, I was still a child and nobody could tell them how my condition would effect me as an Adult. They have never wanted to cause me unnecessary pain.

There is current talk about a select number of NHS hospitals now offering, what the media are calling a cure. After looking into this, i realized that it is the same ‘cure’ that I was offered all those years ago.

I realize that this procedure may work for some, but as this is my blog. I’d like to offer my thoughts that exist through experience, I am no doctor but this is how I see it.

From my understanding, this procedure is known as the ribbon technique were the tendons are severed and the legs are then stretchered to give patients a more natural gate and improvement to mobility. I could go into more detail, I won’t though because even now the thought of this is horrific and makes me feel funny.

There was, in my case at least no proof that this would be successful is painful, (can you see a theme here) and requires years and years of daily physio.  

I know first hand that this Operation doesn’t work, many fof my classmates opted for this, and I can tell you that not one of these patients have now got a better gate or are running marathons. There’s no denying that this helps in the short term, most my friends came back to School walking taller, and with a better stride. 

But then puberty and growth spurts came along and the severed tendons couldn’t cope, the muscle gives way and your legs are an even worse state than before you started, I know people who had far more mobility than me and no have less than I.

The bottom line is this, Cerebral Palsy is a neurological condition. You will never ever cure a neurological condition with surgery to a limb. 

I am extremely lucky to be surrounded by a family who love me unconditionally and I am so blessed to have a family unit that believes I don’t need to be fixed. There are families though, that refuse to except that their disabled child is disabled, that this disability is a curable aliment, that surgery will fix it and then society will except their child.

The media are wrong to use the word ‘cure’ when talking about this, it’s very dangerous and can give those who are struggling mentally with disability, that all there issues will be solved with a knife. I’m sorry to tell you,  It won’t.

 

 

 

 

 

Disappointing Disability Dates… A true story of a massive Arsehole

My love life is often the hot topic of conversation between Friends, they can’t understand why I’m single and I am often told what I could do to improve my chances with the male species. Growing my hair and try drinking wine instead of pints, have been two of the more ridiculous suggestions from my mates.

Of course the reason why I’ve been single for the longest amount of time in human history I’d because of my situation. At first glance my wheelchair can be a bit of a distraction from the nice person in it and is often, frustratingly a deal breaker. It shouldn’t be, but it is.

People frequently ask me if I have ever considered dating a fellow disabled person, after allwe would have such common ground, and a deeper understanding of the struggles we have? Right?

Well, the awnser is, yes I have considered it. And I have briefly dated someone who was like Me before, but it’s never been something I’ve been a fan of. Love shouldn’t be based solely on the convenience of the exact same situation of both parties. Love should compliment each other and not be born out of disabled issues.

Don’t get me wrong, if this presented itself in the form of a fellow disabled lover, I wouldn’t hesitate to eat my words, but the truth is other the majority of disabled people are knobheads. Before you recoil in horror, I have startling evidence that I will be proved right.

Last week I got talking to a Man my age on Internet Dating, things were going well and when I broached the subject of my disability, he said he wasn’t bothered, as he had Cerebral Palsy too, but his just effected him very mildly.

We were getting on well, so instead of bolting for the door I continued to chat. He was charming, and interested in me and, like me he didn’t seem the type to get pitiful about his situation.

A few days in however and there was a side to him developing I didn’t like, he would get upset if I didn’t say hello, and wouldn’t believe me when I said that the only reason I hadn’t was because I was busy with work or that I was at a family gathering and didn’t want to appear rude to family by replying to his messages all day.

I’d pay him compliment and he’d question every element of it asking why and questioning every element.

The constant accusations, we’re too much for me so I politely told him that I didn’t think this was going to work, I advised that maybe he should chill out a bit and go with the flow, after all dating is meant to be fun and exciting, I wished him well, and let it be and thought no more of it..

Last night at 2am I received a barrage of messages, this was the general jist:

Hi.
I just want to wish you luck in searching for Mr Right, Glad my time was wasted I mean, I love my time being wasted. NOT!

I understand that you can’t see through my CP. Oh well, never mind. 99.9% of women. Pity really! I do whole heartedly believe that your ‘disability’ is a front and possibly fictional, who knows..

It went on, I could continue, but I won’t..

But his messages were extremely offensive and goes some way to show others that disabled people are not empathetic, we don’t swap stories and encourage each other to be strong and confident, instead they play a sick game of disability top trumps, bitching about how no one understands and playing the tortured soul act.

I cannot be with any person able or not, in any form, romantic or otherwise who is hell bent on becoming an outcast in society.

And I’m not easily offended, but to question if my disability is made up is a new low I’m fact, I think it maybe the worst remark I have ever had directed at me. Who’d have thought I’d be a fellow disabled person to deliver the blow..

Maybe I live in a fairy tale land, we’re love is a belief that I hold on to, I can’t help it. I was born into an era when the Disney Princess franchise was in it’s infancy and there for rammed down your throat, twice as much as it is these days.

If I’m honest with you, this whole experience has left me disheartened a little, I don’t even see the day when someone outside of my close knot friends and family takes a shine to me.

I know that there is so much more to life than love, but I am only too aware of the feeling I’m missing out on something so lovely. It just doesn’t seem fair…

Date someone who is like me? Errr no thanks.. I’d rather be single!

Manners maketh Man

I’ve never been a massive fan of Disabled People. This might be hard for some of my readers to understand, but it is unfortunately the truth. Of course, I don’t dislike all disabled people, I’ve been so lucky in the fact that I have had friends from both sides. Able and the less able, and I’m thankful for it, I think it’s given me a well rounded and deeper appreciation of what I have and how lucky I am, but I still stand by the fact that me and the Disabled People I’m often found myself pigeonholed with don’t get on.

Many of the less abled people I see, have a chip on their shoulder, looking for someone to blame and approach life with a poisonous attitude to life, existing firmly in the belief that life hates them so they hate life.

I can’t live like that. I am so appreciative of the fact that I get to live here, on this planet, yes. It isn’t quite how any of us had envisaged it, but I’d rather be here than not, my life is not a complete disaster and I am still afble to do so much, despite the hurdles I face.

I am very aware that I have limits to what I can do though and I’m under no illusions that I need assistance with daily tasks. I’m not afraid to ask or except help from anyone who offers or gives it.

I recently read an article by Comedian, Laurence Clark, who I have been a fan of for a while. Laurence has Cerebral Palsy and uses his experience in life to build successful comedy routines. in the article, ‘No More Mr. Nice Guy: When disabled people get nasty’ he talks openly about how he’s often not very nice to the public.

In my view, Laurence is not only, quite frankly being a bit of an arsehole, but he is also doing something that could be a detriment to the disabled community, him and many others in fact..

Let me explain.. you see, I know that the vast majority of people are well meaning, we live in a society where the phrase ‘Random Acts of Kindness’ is encouraged, something that in a world that can be so vile, I can appreciate.  I know I’m never going to live as independently as I’d like, therefore I need some help.

I will never get this help if I snap snarl and shout at these well meaning strangers, and so long as they ask if I need help and don’t do it out of pity or the belief that my life is one huge struggle then I will always be polite.

You want to help, pass me something of a shelf in the Supermarket?  or pick that Sandwich I dropped on the floor up.. Please go ahead, Thank you very much.

My life is hard enough as it is to be full so full of my own self respect that I want to struggle needlessly.

Imagine if I wasn’t polite, firstly my Mother would be mortified and secondly it would have consequences. Imagine I shouted at you with a growl and acidic for offering to help me, pick my bag up of the floor,  If you just left me to it and then four months later saw another disabled person struggling to carry their shopping.. You may think, ‘No way am I helping them, last time I did, I got a right ear full’.  You’d be well within your right. I’d feel them same.

But that second encounter could be someone who’s like me and be quite open to a helping hand. Being rude does more damage than good and does nothing to help promote the fact that disabled people, or most at least, are easy going and don’t walk round in doom and gloom to miserable to live.

We all have bad days, I am by no admission a saint whatsoever. I can occasionally snap, but I instantly feel guilty and will apologize for it immediately, I hate the thought of anybody being upset or offended by my actions.

Manners cost nothing, some well meaning people can make things a bit more long winded than necessary but I will never be rude and tell them that to there face, unless it’s going to cause harm to me.

I’m glad that there are nice people still left in the world, it’s all to easy to focus in how bad the world has gotten rather than the nice things that happen.

I just hope the Disabled people who are mean, don’t put people who want to help others. kill the kindness in people that’s left in the world.

The trouble with wheels..

I’m going to try and write this blog as positively as I can possibly muster, but it is about an issue that I have lived with since my teenage years and now annoyingly into my Adult Life.. I’m talking about singledom.

See the thing is, I’ve never been in what I can call a relationship with a member of the opposite sex, I’ve been close to them but they have ended up being rather one sided than the other, or if anyone has ever showed any interest in me, it’s been over before it’s began and never really warranted a mention to anyone, really.

So why is my love life so ridiculously pathetic? I’m not the ugliest kid in town, I take care of my appearance, I’m a good laugh and a great friend, apparently, there’s alot of affection inside me.. but none of it matters, because of one thing that will never change. My Wheelchair.

I’ve said before that sexy and disability go together like oil and water, I am more likely to be seen as a ‘good old dependable friend’ rather than the object of a Man’s desire. I see dating as a hurdle race for me, and I’m no Sally Gunnel of Love it seems.

Going out ‘on the pull’ never works, guys don’t seem to notice me, if I’m out with my able bodied girl friends I don’t stand a chance, sometimes you see the fear in the eyes of guys who are stuck talking to ‘the one in the wheelchair’ when they’d much rather be talking to the gorgeous girl to my left, for in fact anyone other than Me.

So I tried online dating, with both tacks as a socail experiment, for a couple of months I mentioned on the profile I was ‘withip h wheels’ and made the issue sound like not a big deal, which to me, it isn’t. I remain upbeat and positive, honesty is the beset policy after all. and then I tried not mentioning my shit legs on my profile, with the full intention of telling a prospective mate about my chair when the time came, I started to think that maybe if they got to know Me before they found out I was disabled they’d realize what I’ve always known, I’m not defined by my wheels.

The second tack has worked slightly better than the first, at least it leads to open conversations about the wheelchair an why I’m in it, but these conversations fizzle out eventually, the flirting stops and I’m left hanging mid conversation. It’s not like I’d don’t try and put myself out there. I do it’s just I haven’t had much luck.

I’m not saying that the single life is a constant source of trouble in my life, I often feel I’m glad to be single, when my Mates are in full throngs of love problems but every so often around a birthdays, and particularly at Christmas I get a weird feeling of loneliness and frustration, and not the kind of loneliness that can be filled by friends popping over or family being around you that can fix it.

It’s quite hard to describe the feeling that while you are living a full and enriched life in so many ways yo know that your missing out on not only the closeness that comes with the other half but I’m missing out on a big thing not having a relationship. Somedays it doesn’t feel fair. Or like it will ever happen

They stop looking and you’ll find it, but it my case, if I stop looking I fear nobody will discover me, I know I have alot to offer someone, somewhere over recent years, I’ve learnt to love who I am and not to feel ashamed. There’s no changing my disability and if someone doesn’t like that, well I can’t say anything that will change your mind.

I’ll keep going, it’ll happen. Just not anytime soon.
When it does I know it’ll be worth it.. Right?

Is ‘Spazzy’ Sexy?

I’ve said for years that disability and desire go together like oil and water, I’ve never felt ‘sexy’. Saying the word itself makes me cringe, and I don’t think I class myself as beautiful either – partly because, if you go round rating yourself as above average people will begin to hate you – and besides I’m not deluded, I’m no Jennifer Laurence.

The word Disabled, in it’s self doesn’t give you a image of desire, nor does it make you feel passionate. In the main, it’s a massive turn off, prompting pangs of panic and the inevitable stupid questions from the opposite sex. interest in romance is often non existent and when it is present, it comes with curiosity in the driving seat.

‘Can you feel your legs?’ and ‘Can you have Sex?’ are the most popular questions I get when blokes approach me.  The answer is Yes, if your wondering.

Society has a very narrow view of what beauty is and what you should deem to be desirable. People like me, don’t fit in that category, when I was a kid there was no disabled people used in Television, Film or in Literature who are the romantic leads, people with affliction, illness or deformity have historically been seen as the villainous bad guys, No one has ever had a secret crush on a fictional disabled person or at least if they have, they would never admit it.  Maybe this is the reason, I find it so hard to make myself appear alluring to the opposite sex, for years, it’s been a mythical unknown land and the thought of the differently able having a sexual appetite is, to many, a stomach churning thought, that others don’t wish to consider.

Disabled people should be the Baddies in Bond not the desirable forms in a Mills and Boon.

Sexy Sick Lit  is a new literary genre and is written about women who have chronic illnesses such as Breast Cancer, MS and Parkinsons as well as Disability that features, content of a sexual nature often describing passionate encounters with able bodied people.  It’s caused controversy, Many critics have called this the downward spiral of publishing, and parents are outraged at the content of such stories, with many worried about the effect it will have on teen readers, I can almost hear the cry of Helen Lovejoy from the Simpsons, screeching ‘won’t somebody think of the children!’ before I’ve even start to talk about this issue.

I am an advocate equality in all forms of our daily lives, disabled people have the same sexual desires and experiences as everyone else and like everyone else we have needs, I wish people would understand that just because we are unable in some aspects, we still have capacity to be passionate, sexual beings. I will be honest, there’s a bit of this Sexy Sick Lit that makes me feel weird.

Firstly the name of the genre is horrible, using the word ‘sick’ in anything in the traditional sense immediately makes people think ‘If people know I’m reading this stuff, they’ll think I’m a pervert’. Like its wrong and dirty.

It happens, get over yourselves, this is 2014. Sexy Sick Lit shouldn’t really exist as a genre, how about sticking disabled people, both Men and Women in  the more socially acceptable Chick Lit, or Mills and Boon, in formats suitable for Teens and Adults.

Wouldn’t it be refreshing to read a story about love that happens to feature one, or both of the characters that were disabled, not made out to sound like a freak show, but something that shows love as just that
Love in all of it’s glorious forms, that didn’t make the reader feel grubby and ashamed?

Maybe steps like this would begin to change perceptions of love, sex and disabilities in today’s society.

I hope

I don’t really know where to start with this blog. All I know us that things have happened that have made me reflect on what I’m doing with life.

Last week, I learned of the passing of a young lad, I won’t be going into much more detail than this, but the news has been a horrible shock. He was just 12, an age where innocence should be rife and all you should be worried about is where One Direction will chart in the top 40.

When I heard about him. The sadness swelled in my throat and the tears ran as easily as the last time I grieved for my Friend, who’s life was cut short by disability. I felt sick. It was happening again and I couldn’t believe it.

As I was driven home that night, I tried to fight off the tears, not just for the young lad who had died, but for those who I’ve lost, and for those of miss every single day.

It’s the hardest thing to cope with when your disabled, loosing those who are close to you, you become a tight knit group with the ones you build friendships with, there’s no explanation of life’s difficulties, your not judged on what you can or can’t do and at that early age, these people are the people who make you realise, often for the first time in your life, your not a freak. We are just people, trying to get the most out of life with crap bodies.

Some bodies, like second hand cars, will break down before you reach your destination. Sadly, leaving some behind for ever. It’s so unbelievably cruel. It breaks my heart and never, ever gets easier.

I wanted to call my close friends and tell them. I love them. And let them know just how much I care and are thankful for them. I don’t think I tell them often enough, and if I was to ever loose them, I’d regret not telling them.

I should stop winging and wasting time worrying about little, stupid, insignificant  things. Life is short what the hell am I doing, of any real difference to this world? Nothing, really.. So I’ve created a bucket list, do I don’t look back on this lucky life of mine and thing ‘shoulda, woulda, coulda’. I’m too scared of my own shadow at times, and get all too frustrated at my limitations. Yet I’m still here, breathing and stuff. I think I forget how lucky I am.

Maybe it’s a sign, but I keep seeing things that strike a chord, in magazines, on the TV, I hear stories, harrowing ones that for some reason all have the same moral. I gotta keep going, and not waste my life, maybe it’s just because in sensitive or maybe it is my mates kicking me up the arse to do something with my life.

More importantly, I miss my friends do much. This Thursday would be my Best Friend’s 25th Birthday. It’s weird to think about him sometimes, what he’d be doing with life, what he’d make of me these days, not to mention what he’d look like.

I like to think he’s looking over me, and whatever I’m doing, he’s proud and I hope he knows how much I loved him and all the others and just how much I miss them..

Have no fear.. (four wheeled) Wonder Woman is here!

I’ve always been a big fan of cinema, for me it can be a distraction from discomfort and a complete avenue of escapism for an imagination that is sometimes limited in reality.  The best present my Mum ever got me on a whim has been a Netfix account. A good chuckle at a comedy or getting absorbed in a romance,  and routing for a hero in a action movie, lets my imagination run wild, like letting an excitable child of it’s rains.

There’s one kind of genre that I have become a massive fan of… Superhero Movies. I only really discovered my love of them when I became a Media Student, quite thankfully actually, if I’d have realized as a child, I would have been in a comic book store all the time and been classed as a geek.  

Now as a  20 something my love of Superheroes is quietly kept under wraps most of the time, I don’t do the conventions, I don’t go to the Supermarket dressed in lycra, but there is something about the whole franchise that is, to someone like me so cool that if professor X sought me out and asked me to recruit to the XMen. I would. Probably. with no hesitation in fact.

 Superheroes are outcasts in society, they feel different and yet in the end, despite this they are the eventual hero. the savior the one society calls on when it all gets a messy. XMen inparticular, have a form of disability to deal with, you often see the hero in an Xmen franchise, suddenly told, they are different. Struggling to comes to terms with it They come to a cross roads and have to decide whether they embrace and accept it, using their difference for a positive outcome. It just so happens that, they save the world. Mutants called on when you humans fuck everything up… 

Frankly an Xmen has a cooler disability than Me. they have super power. I ache, most of the time, They look sexy, I wear comfortable shoes and hardly ever noticed by blokes,  I know it’s not the same but I can definatley see the similarity. I don’t go round calling myself a Mutant, but even that is cooler than the horrible ‘Disabled’ label.

I’ll never the world, and I’d never try and be a superhero but watching a superhero Movie does leave me with a boost, I leave the cinema with a reinforced belive that just because I am ‘different’ it doesn’t mean I’m a write off. I have a talent, just like able bodied people and I might not have a metal skeleton, I can’t read minds or bend spoons but I do alright.

 I also have a renewed feeling of defince toward society and it’s assumptions about me, not in a aggressive way but more of a ‘hold your head up high, be proud of who you are because, actually your doing alright’

 

 

 

I should be better…

I’ve never been more proud to be a Midlander, than I have this week. The eyes of the world have been looking at us over the past few weeks and months as Burntwood teenager Stephen Sutton battled with terminal cancer.

I didn’t know Stephen, but I knew about his campaign long before the cameras appeared, his determined nature and refusal to let his circumstances dictate what he able to do was something I could relate to, he just got on and turned the most negative situation possible into a catalyst for positive impact.

I hate the term inspiration, and it’s all to often used to describe me, something which is quite simply, ridiculous and wholly misplaced, when you compare me to Stephen Sutton. I will never be as eloquent or as stirring as him, he was about to die and yet remarkably calm and at peace with that fact.

Sometimes it’s a struggle for me to keep smiling, the smile and seemingly positive impact I try and spread can slip, and actually if you knew what I was really like, you take every nice thing you thought about me and think again. My positive attitude doesn’t exist for greater good, I don’t raise awareness, and I don’t think my words have enough sway to raise millions for charity. My attitude exists for purely selfish reasons. I don’t want to change the world.

Stephen made me feel like I don’t do enough, made me realise I complain too much and made me want to be a better person, and an ambassador for disability. Infact, I feel quite selfish, and guilty that I’ve occasionally sulked about the circumstance I’m in,  yes, life isn’t perfect, but I’m not dead, maybe I should be creating a legacy, because people aren’t going to remember me for long after I’m gone. I’m nothing special.

Stephen, lost the fight this week, it’s fair to say he is a local hero. I never got emotional about his story when he was alive, but its only now I realise just how remarkable he was.

His death brings very painful memories back for me, I’ve lost a number of class mates, all around Stephen’s age through health. Unfortunately, disability didn’t get along with them in thier cases and picked a fight with every fibre of thier being every single day.

Loosing a friend is never easy, and like any grief it never gets easier. One Christmas I lost two close friends in the space of three days, my grief was unbearable, There was always a chance my friends could die earlier than me, we knew in some cases it was a for gone conclusion, but everytime I’m told about another friend, It kills me. A bit of my spirit goes with them.

It’s shitty when a funeral service actually doubles up as a school reunion. And the the reason for there death is even more upsetting. They weren’t teen tearaways, we didn’t go out doing lines of cocaine, and gallons of booze, we were just a happy bunch of friends.

Seeing the pain and anguish that Stephen’s friends were in, made me miss my friends who died, I felt that same sickening knot, that forms when you discover someone has gone and felt the hopelessly numb feeling that hits you. My heart goes out to them.

Stephen will never leave them, not really, I only hope that I have made my friends proud. I’ve lived my life partly for them since they died, mindful that I’ve still got the life they wish they had.

Rest in peace guys. You’re always with me, even when you think I’ve forgotten…