Most of you will know from CP Teens on Facebook and Twitter that I went down to Salcombe for half term and I had a very 'weird' experience, but weird in a very good way! I parked myself on a bench in the middle of Salcombe as I couldn't be bothered to stand and wait in a shop for my parents and I needed to phone one of my friends (of course, perfect opportunity to blame the old CP, 'oh mum, I can't possibly walk up that hill and stand up waiting for you' ... nothing to do with the fact that I'm lazy and I'd rather sit on my phone!). As I sat down to use my phone, Liz (my friend and landlady of a fabulous pub, Liz did a guest blog back in October and you can find this using the blog archive to the right >>>), waved to me from the pub window and I thought to myself how lovely that a lot of people in Salcombe recognise me, stop to talk to me and seem to know all about me! Little did I know that I was about to be recognised by a total 'stranger'!
I suddenly heard a lady say to me, 'Hey! Are you Ellie Simpson? ... CP Teens UK?!'. As ever, my startle reflex kicked in and I jumped a little bit, thanks CP! But, of course, I immediately said, 'yes, yes I am!'. It was only Sarah Pearson, GB Para-Triathlete, who has Cerebral Palsy! Sarah follows CP Teens UK and has been in contact with me through the website and through email; some of you may have noticed that Sarah features on the CP Teens UK homepage too!
How amazing to,
a) be recognised and so far away from home,
b) be in the same place, at the same time in a very tucked away part of South West England and,
c) see how big CP Teens UK is becoming!
I was, and I am, virtually speechless! The only thing that we both said afterwards via Twitter was, 'why didn't we get a selfie together for CP Teens UK?!'.
Now that I am back home, last night I went out with Laura (who I met through CP Teens UK) for a belated birthday meal. We bought each other birthday cards, as obviously that's what you do on birthdays(!), and we both had the same idea as our cards both took the mickey out of CP! Laura's card to me said...
'A well balanced person has a drink in each hand'!
And my card to Laura said...
'I'd like to blame the falling over and the face-planting on the birthday drinks ... but it seems to be a bit of an reoccurring problem'!
If you can't laugh at yourself, then you take life too seriously! It is also back to athletics tonight along with Laura, I have my Team GB, Classification and Talent Selection Day coming up in March, so instead of winding Adam up (one of the coaches), I best get my head down!
CP Teens UK hit 500 followers on Twitter yesterday, which is just incredible! Twitter really is the 'backbone' of CP Teens as Twitter is where I started even before the website back in September; I originally made a Twitter account for CP Teens just to sort of experiment and see if anyone was actually interested in my 'idea' as I could use hashtags, for example, #cerebralpalsy, to attract people who may have been interested. It became apparent the next morning when I woke up to 100 followers including some famous faces, that my 'idea' was quite liked! And it just grew and grew from here!
Through Twitter, I have found many 'SDR' accounts raising money; I'm sure that a lot of you know what SDR stands for/is, but for those of you who don't, SDR (Selective Dorsal Rhizotomy) is 'a neurosurgical procedure aimed at reducing spasticity (tight and stiff muscle tone) in the lower limbs. It is most commonly used for children with spastic diplegia (two limbs affected) which accounts for 25-30% of children born with Cerebral Palsy.' (Scope - http://www.scope.org.uk/help-and-information/therapies/selective-dorsal-rhizotomy). In simple terms, children with Spastic Diplegia Cerebral Palsy who cannot walk unaided, can begin to walk unaided after this operation.
Now, I admit, I could be getting it wrong/not seeing the full picture from one end of a computer/television, but the peoples' progress who I have followed before and after the operation is remarkable. It appears to be an operation that along with hours and hours of physio, has a miracle of an outcome. People can shoot me down and tell me otherwise (because I really don't want to offend anybody!) but it does appear from the before and after videos of some, it's almost could be a cure! People with Spastic Diplegia have their legs affected; my understanding is that people who are eligible for SDR, their leg muscles are literally too tight to enable them to walk, and their arms/hands are minimally affected, if at all. Once SDR loosens the leg muscles, they can walk after lots and lots of physio; it must be pretty amazing to almost, in some cases that have worked exceptionally well, wave goodbye to CP/for it to not play as such a big role in your life. Of course, the brain damage will always be there as you can't erase brain damage, physio will always be there, hospital appointments and possible further operations will always be there, and walking won't be the easiest of tasks, but I suppose it is a bit like putting a plaster over a cut; it's not completely gone, but it's much better.
I have Athetoid Cerebral Palsy, I couldn't have SDR, neither is there one operation that could change my life single-handedly. Also, both my legs and arms/hands are affected; if one day my legs could be 'fixed' similar to SDR, my arms and hands are still pretty much not very useful! And to be honest, if there was a cure on some alternate universe, would I go for it? No, probably not. I wouldn't be 'Ellie' if I didn't have CP, and to be quite honest, there are much worse conditions that people live with; I've also met some amazing people because of having CP and there are 'CP perks' as I like to call them! One that always sticks in my mind is when I was in a London hospital, when I came out, I was let loose in the Harrods toy department and I could pick whatever I wanted! Well, you can imagine how amazing that was for a 5-year-old, something like this didn't even happen at Christmas as you had to be good and see what Santa would bring!
There are days where I am like 'oh for goodness sake, can I just for once not have to ask for somebody to get me a drink?!', or 'why can't I just do my OWN hair for once?!', but it has to be a pretty bad day for me to be in that mindset. CP has shaped me as a person and my life, but in a good way I feel. I will freely admit that if I didn't have CP, I would most have probably grown up with life going my way, giving me a tunnel vision mindset, and I would have most probably never given a thought to 'the kid with CP' or whatever disability in my class at school, as selfish as that sounds and I hate to think I would be like that, but I've seen how my 'friends' are like towards me and I can't help but wonder, would I be like that if I was able-bodied and not experienced what I've experienced first hand? Teenagers are teenagers at the end of the day, and some can be extremely selfish.
This summer, I am very excited to say that I am going to a festival! I can't put into words how excited I am! However, I did have some hilarious thoughts the other day about how it is actually going to be not exactly ideal for me...
1) Getting dressed and undressed in a tent, I think I'll look like a wasp in a jam jar!
2) Toilets, me and a porta-loo!
3) Eating, especially breakfast, cereal + milk + holding a bowl + actually getting it in my mouth
+ standing up without a table = not going to happen!
4) Walking and standing up a lot, interesting!
It's definitely not going to stop me going though. If I decided to adopt the 'I can't do that, I have CP' attitude, then I'd probably not do a lot with my life ... where there's a will, there's a way!