I don't 'suffer' from Cerebral Palsy!

Having Cerebral Palsy has seemed to get my face in quite a lot of newspapers, in the local news programmes etc. over the years for reasons I won't go into, and recently, as most of you know, for CP Teens UK. Now, I'd be lying if I said that I didn't like opening the newspaper and seeing myself, or hearing my name on the local news channel - everyone likes 30 seconds of fame! But there is one thing I don't like, and these are the lines that go with my news stories (or, any CP news story for that matter) such as... 'Ellie, who suffers from Cerebral Palsy...' or... 'Cerebral Palsy sufferer, Ellie Simpson...' or even... 'Ellie, who has suffered from Cerebral Palsy from birth...' Oh please! I don't think I could put it any more simply, I do not 'suffer' from CP, I have Cerebral Palsy but I don't suffer because of it! Now I know that the news likes to pull at people's heart strings (another thing, people should not feel sorry for me and stand there proceeding to go 'aww'!), but it even says in things like Doctor's letters, NHS notes etc. 'Ellie suffers from Cerebral Palsy'! I have a life, friends, family, a dog, a lovely home, lots of holidays, lots of clothes, a car, the usual teenage gadgets like an iPhone etc, decent GCSE's, decent A-Levels, 3 unconditional university offers, I can walk, I can talk .... etc. I could go on! Does it sound like I suffer?! Okay, most physical things aren't easy and I do sometimes look at things like buttons, shoelaces, kettles, scissors, high heeled shoes, my feet, people my age moving away to university and being independent etc. and go 'hahahahaha, sod you!', or maybe something even stronger (I don't mean it directly at anybody though!) and life can be a bitch! But I would never, ever say that I 'suffer', and life is a bitch to everybody, mine just happens to often be Cerebral Palsy related as I have Cerebral Palsy. Suffering is when you're in extreme pain or discomfort, extremely unhappy, or when you're listening to your Dad's iPod - now I do suffer when he puts it on! But, on a serious note, I don't suffer. I've lost count of the amount of news articles that have told me that I 'suffer' from CP .... oh really, because that's news to me! There has only been one memorable occasion where somebody said that 'Ellie has Cerebral Palsy' rather than 'Ellie suffers from Cerebral Palsy'! Sean and Becky (unless you live in Chesterfield you will not have a clue who I'm on about! Chesterfield people, I'm the biggest fan of Peak FM Breakfast, so I was chuffed Sean & Becky did my award!) well, Sean to be precise, didn't say that I 'suffer', at the time I was 12 so anything like this didn't even cross my mind - to be honest, I think I was to busy trying not to fall over! But, now I look back through all my stuff at 19-years-old, it did strike me that everything but this says that I 'suffer' from CP. It also a very memorable occasion for lots of different reasons - it was an award ceremony and I was an award recipient back when I was 12, and I honestly don't know why I received the award as the other children who received an award were just simply amazing and they led extraordinary lives, but, it was an amazing night, one which I'll remember forever! And, I'm certainly not 'brave' as it says in the video (it won't upload!), I'm the world's biggest wimp (especially when it comes down to needles, ewww!) and I'm only living my life like everyone else on this planet. I don't usually notice things like this, but watching the video made me think how much my walking has improved. People who tell me that my walking has 'improved' I usually just smile and nod, but quietly think to myself, yeah, thanks for being nice, but my walking is my walking ... I have CP! But, I can genuinely see a big difference from this video 7 years ago to now!

A documentary called 'Brain Doctors' captured my attention the other night. It featured adults having operations to remove things like brain tumours, which in these particular cases, was most likely to leave them with some form of brain damage afterwards. The programme interviewed the individuals at home with their families just before the operation. I found myself being so shocked and upset for them when they were explaining they might be left with a speech impairment, limited mobility, stamina, and needing to occasionally use a wheelchair. I felt myself thinking, that is the worst! But, then, I stopped and realised ... what they are describing is basically me! It made me think, is disability a state of mind? Like, it took me a while to realise that what they could potentially be facing is actually pretty much what my CP is, but I didn't even realise because I don't tend to focus on it. I don't really know how to put it into words but, if I thought of myself as disabled, would I have picked up on the similarities straight away? I tend to not have the word 'cannot' in my vocabulary. If I sat around on the sofa all day, every day thinking that I couldn't go out and do anything because I am disabled, would my disability be worst? I don't know if I'm making any sense?! Of course, I'm not trying to be little the individuals's situation at all. They had been through life as fully able-bodied, independent people and it must be so, so, incredibly hard to suddenly become disabled. I actually consider myself lucky to have been disabled from birth - I've had my 'problems' (I can't think of another word!) from day 1, I've lived everyday with a disability and because of this, my disability has just grown and lived with me - it's allowed me to become an 'expert' in adapting things and making things work for me, I don't know what it feels like to be able-bodied, and quite frankly, I'm not bothered! But, to suddenly have to completely almost swap your body and to have to live with a 'new' body that doesn't quite work, must be one of the toughest challenges.

I have been asking on the CP Teens UK's Facebook page if anyone would be interested in CP Teens UK charity wristbands. The one shown above reflects the CP Teens UK colour theme, but I can order them in people's personal colour preferences. I will be making no money at all out of this, in fact, quite the opposite - I will order the wristbands, if you wish to purchase one, I ask you to leave a donation on my Just Giving page, where the money will go directly to Sheffield Children's Hospital (chosen charity), and I shall then send you your wristband! I've only had half a dozen or so responses, so I'm hoping I'll get more of you responding on here!

Featured Posts
Recent Posts
Search By Tags

© CP Teens UK 2020.

Registered charity - 1172105

 

Website by Ellie Simpson.

CP Teens UK is committed to the safeguarding of children & vulnerable adults.

DISCLAIMER: This organisation & website is run by people with Cerebral Palsy, for people with Cerebral Palsy (and other disabilities). No medical experts or professionals on Cerebral Palsy, or any other disability, were involved in the making of this website.

CP Teens UK

Office 7

The Community HUB

East Stand

Proact Stadium

Sheffield Road

Chesterfield

S41 8NZ

office@cpteensuk.org / ellie@cpteensuk.org