You will be amazed how you can adapt to new challenges over time but you're allowed to admit that this can be hard. Be patient with yourself.
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Growing up with cerebral palsy: a letter to my 7-year old self
You’re currently 7 years old and are about to embark on a journey of a lifetime. This journey will show you the world in a completely new light, it will show you things you never thought you would see, and allow you to meet people you might otherwise have never met. Unfortunately, this journey is tough, it will test you past the limits you thought you had and cause so much frustration and upset- but you are capable of overcoming this, you can find tremendous joy in every aspect of your life.
You have just been diagnosed with mild cerebral palsy.
You have never heard of this, and have no idea what it is! But don’t worry- mum’s done lots of research and has your back! These hospital appointments may seem strange, and unnecessary as you don’t think anything is wrong, but it will all become clear with time.
Ever wondered why you walk on your toes and fall over more than your friends? Ever wondered why you can’t hop, struggle with maths and feel tired? Or have you ever thought about why your left leg feels tighter or hurts in ways you can’t quite explain yet?
I guess these are things that you’ve never really thought about- they are just normal!
The physio-therapist will make you a splint to wear on your leg, I’m afraid you won’t like the casting process and the physio will forget to put a pattern on it. When you turn up to the appointment to pick up your AFO splint you don’t know what to expect. You may not be happy that it’s plain white, but this means that your friends get to put stickers on it instead- this will become a very fond memory. Unfortunately, shoes and splints are a nightmare. I know you love all things girly and just want to wear nice shoes like everyone else. Just please try and not get too upset (or throw too many pairs of trainers across the shop) you get your dream pair of ‘pretty shoes’ in the form of pink sandals that you love, and get some lovely brogues when you are older. Shoes like everyone else feels like the most important thing right now, but this isn’t always the case.
People aren’t always the nicest. They may call you names and push you over. They’ll make fun of the way you walk and say things that make you feel completely inferior. Getting bullied for something you have no control over is the worst thing in the world and I’m sorry. I’m sorry for all the times you’ve not felt good enough. I’m sorry for all the times you’ve felt less of a person because you have a disability. No one deserves that and it certainly is not true! There will be times where you wish you didn’t have cerebral palsy, it can feel like it’s getting in the way and be nothing but trouble.
Your family won’t let the bullies win. They’ll sort things out and be there to pick up the pieces. They will teach you to laugh and joke. You’ll laugh through the tears and realise all the funny things about having cerebral palsy. You will joke about yourself because sometimes it’s hilarious that you fell over NOTHING- how is that even possible?! They will teach you to be open about having cerebral palsy and that it doesn’t mean you’re less capable of achieving anything. Your family will support any dream you have, even if your first career idea is to be an air hostess. Can you really see me walking up and down an aisle pouring drinks during turbulence?
Needless to say, you figure out a career path that is logistically possible!
As you continue up through primary school you may find things tough. Maths is never your strongest point, you have no idea about the 6-8 times tables and despite being told that ‘practice makes perfect’ unfortunately you never figure this out. However, this doesn’t stop you getting a B in maths at GCSE! You’ll get taken out of the classroom to work on telling the time. You will stare at this clock and not have a clue what time it says! You will start high school and still not really be able to tell the time, relying on digital clocks. Despite this, it slowly sinks in, even if this means having to work it out every time you look at your watch and 24-hour time still makes absolutely no sense. Education can be very tricky at times, yet I can reassure you that the hard work does pay off, you even end up studying psychology at university.
When you’re 15 years old you will choose to do an amazing thing. It’s something that will change your life and give you hope. You will start a blog and realise your passion for writing, even if it takes months to get the hang of it all. You will connect with people all around the world who have cerebral palsy and learn so much about your own condition. Getting to know others with cerebral palsy will be a massive part of your support network and friendship group. These people will give you the confidence that being you is more than okay. It will create some of the best friendships that I am sure will last a lifetime. By learning more about cerebral palsy it will mean that you can support others with the disability and reasure parents along the way. Writing will help you to process the changes in health as you get older, it will also give you more confidence.
Make sure you complete your bronze Duke of Edinburgh Award because it will be one of the best things ever! Go on that canoe trip and complete the NCS Programme that is packed full of outdoor activities. You may not be able to do hop- scotch when you’re in primary school but this does not mean a zip wire is impossible. Please agree to help in the school production, it will be the highlight of your year and be great fun. Just go out there and grab every opportunity.
You may be all shy and quiet now, but this will change in Sixth Form. By learning more about your disability and being open about it will give you the confidence to be yourself. Believe it or not, you’ll apply to be Head Girl. You will figure out that you actually enjoy public speaking.
Medical professionals will always be there and give you so much advice. Some of it will be useful and some of it may not be. Being given a booklet that says you need to ‘accept pain’ will not be helpful in the slightest, just remember these people don’t actually experience what you go through. On the other hand, they do know some things. You may hate those physio exercises you have to do every day, why would you want to do something that causes you more pain? However, they work, stick with them and you will thank yourself in the future.
When medical professionals mention the idea of a wheelchair when you’re older, please don’t shut this idea out completely. I know you’re stubborn (in a good way) and just want to carry on being independent, but you can, just in a slightly different way. You may hate your chair at the beginning, seeing it as a symbol of defeat. However, try to see it as giving you more energy and less pain, it even means you can go out more and not be as tired! Different medical equipment isn’t meant to stop you doing things- it is there to allow you to continue doing the things you love.
Go and enjoy things. Try new things that may seem a little ‘impossible’ and enjoy the learning process. Don’t worry about what other people will think, I know how hard this can be at times. Be okay with being you, but also try not put too much pressure on yourself. You will be amazed how you can adapt to new challenges over time but you’re allowed to admit that this can be hard. Be patient with yourself.
Chloe, my advice to you is to try your hardest and never think you cannot achieve something. Be certain about your goals, but flexible in how you get there. Remember to believe in yourself and laugh along the way. It may be hard at times but amazing things do happen!
Chloe (aged 19) xx
Read more: Exploring intimacy with cerebral palsy
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