At the 'grand old' age of 21, I would by no means claim that I am an 'expert' on life. I don't think anyone is really, regardless of age. I mean, I struggle to make decisions on what breakfast cereal to have in the morning! It is the same old story - when I was 14, I literally felt as if I was so mature and that I had my life completely sorted out, and now that I am 21, I literally don't know what day or year it is half the time!
However, one thing I would argue is that I'm pretty clued up on is living with Cerebral Palsy. Not even your Cerebral Palsy, my Cerebral Palsy - as no one person is effected in the same way. I would say I've still got a lot to learn, e.g. only the other day I discovered a successful way for me to open a bag of crisps without crushing them into bits! But, I've also learned a lot and from day 1 I have found ways around things, e.g. before I 'found' my legs, I developed a great 'scooting' action on my bottom, and it got me to where I needed to be just as my legs would have!
I don't want to sound rude and dismissive in this post, because actually I've had some great people who have given great advice along the way. But, I don't know if it is only me who has experienced this, however don't you just hate those people who come into your life from nowhere and give you advice/tell you what you should do related to living with your disability? I don't know why but I've experienced it a lot lately and I just sit there thinking "Er, how do you think I've got through the past 21 years?!".
Photo credit: https://s-media-cache-ak0.pinimg.com/736x/e4/78/c4/e478c4233ff1d79f0bf50fce58b427c3.jpg
Again, I want to stress that I'm not trying to make myself out to be an expert, because I'm not an expert. And, I am not dismissive of all advice - it is good to pick up little 'bits' from people as you go through life. It just frustrates me that people who have no experience of Cerebral Palsy as a condition come out with such bold statements like "You should go to the doctors about losing your balance more often today, they might be able to sort it out and just check out you're okay" - oh my days! I have Cerebral Palsy. I do lose my balance. If I lose it more, it is because I am tired or I have stupid footwear on. No, they can't sort it out. Last time I checked, brain damage wasn't irreversible. And, I am fine. No, I am not dying. Thanks for the advice.
And, then they look at you crazily because you've said you're not going to the doctors or not taking whatever the advice is that they gave! Probably not as crazily as a doctor if I walked into a consultation room and proceeded to say, "Hey, I have Cerebral Palsy and I've been experiencing some balance issues lately. Can you help me?!" though!
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Moving on from the rubbish advice giving, on Saturday night something came over me and I literally don't know where it came from! As some of you know, back when I was 18, I was absolutely desperate to go out with my so-called 'friends' into bars and clubs, and through their impressive and successful efforts, they avoided taking me with them and gradually isolated me out of the friendship group (which actually turned out to be the best thing that has happened to me, but obviously it wasn't at the time!). I have since made much better friends and I wouldn't be without them. On Saturday night, I went out with one of these friends (Laura Webb, who I met through CP Teens UK, was also meant to be coming, but unfortunately she was ill!) for a meal. Where we went was on the same 'run' as most of the clubs and bars in my hometown. So, after a few Proseccos, I clearly had a bit of a confidence boost through the alcohol and I decided we were going to go in the bar/club next door!
I literally yanked my friend in who wasn't so sure & pushed her to a table - talk about peer pressure, I am so mean, haha! The bouncer let me straight in too - he probably felt sorry for me wobbling about everywhere, but on this occasion it was acceptable as it got us straight in, haha! I still don't get what came over me! I'm glad we did it though - I can now say 'been there, got the t-shirt!'. I don't know if my poor Mum wanted to applaud me or have a go at me! I could see her worry, but I could also see her laughing and kind of happy I had finally got the experience 'in the bag' after spending many weekends back when I was 18 disappointed that all of my 'friends' were out and I was sat watching X Factor at home. No injuries or deaths occurred, so all is good!
This week's guest blogger is Francesca Hughes, who is 14-years-old. Enjoy...
"A few weeks ago in one of my English lessons we were reading a short story about a magical monkey’s paw (weird, I know!) and my teacher asked us to write down what we do with three wishes, just like the family in the story by W.W Jacobs. Firstly I put down 'world peace' because it would benefit so many people. Secondly, for 'my friends and family to be happy'. I drew a blank at my final wish! Everyone on my table looked at me, expecting me to write down 'to be able-bodied'. But, instead I wrote 'to achieve my dreams of being a published author'. Some of you will understand why I used my final wish on achieving my dreams, others of you won’t - wouldn’t it be great to be able-bodied? Don’t you want to be able-bodied?
Sometimes it would be easier, but no, I don’t want to be able-bodied.
The 5 stages of my CP
Rejection - in the first couple of years of primary school, I rejected my disability a lot. I was aware of it as I used crutches and a walking frame. However, I blocked it out by attempting to play tag and kiss chase with my friends. It wasn’t much of a chase because teachers would shout at me to slow down before I even tagged or chased anyone!
Realisation - in my later years at primary school, I began to realise what my disability really meant and how it was something my friends could never fully understand. It was something I struggled to understand and I found that very hard.
Questions - this realisation hit me like a brick and led to so many questions for my doctors and family about my future, about lots of things really, that often made my eyes stream with tears. I still have some of those questions today but, it is important to live in the moment.
Acceptance - By the end of Year 6 , I was starting to accept my disability. However,my transition to secondary school changed this dramatically. My classmates were people I had never met before apart from a handful of girls from my primary school and they were great. I’ve made some amazing friends at my secondary school now, but their understandable curiosity set me back for a while in Year 7. My new friends's questions were polite and very considerate, but they dragged up my old insecurities. Towards the Christmas of Year 7, I told my Dad, how I felt - I was crying but he dried my tears and reminded me that my disability is a part of me, but not all of me and that I shouldn’t hate myself for it - I'm a good person who has my family and friends, including him. If my 'friends' can’t accept me for who I am, they’re not friends at all. I just want to thank him and anyone else who has ever given me similar advice over the years - whoever you are, it has really helped me, and thank you to my best friend Roisin - you’ve helped me to accept myself from the night we met at the wedding and you've always been there for me with so many things, including my disability.
Embracing - finally, embracing my Cerebral Palsy was really hard, but I have now with the help of my family and friends I now know it has made be the person I am and that's why I don’t wish to be able-bodied anymore. CP Teens UK has helped me so much these past few months with embracing my CP. Thank you to Ellie, Chloe, Jabe and many others. I’m so grateful to have met you all!"