Dear Cerebral Palsy,
You make my life more complicated than it would be if I didn’t have you, but you give me strength to carry on and try again… and again.
You make simple tasks difficult for me because you make my muscles react in some very peculiar ways. I go to pick something up, but then you make my body jerk randomly and because of this, you make me chuck things across the room. This can be either highly amusing, or incredibly frustrating. You even make me throw things backwards sometimes. I hope it doesn’t hit someone! I look around to see where it has gone, sometimes the objects end up so far away from me that I think to myself, I bet I couldn’t do that again if I tried.
To tell you the truth, I hate you sometimes, but that isn’t very often. You try to stop me doing things, but you will never succeed. I will just find a different way to do it, and I will keep going. It may take me years to figure out how I can do it, but in the end, I will triumph! I may need help with doing certain tasks, but I’m certainly not ashamed about asking for help. You can make me fall in lots of different ways, but you can never beat me!
You make communicating with others difficult because you make my speech odd. Sometimes I can say what I want to say with minimal problems, but other times you make it really difficult for me to get my words out. I hate it when this happens, it is immensely frustrating for me, and I bet the person I’m talking to finds it frustrating too. I wish you would let me talk freely, without concern about whether my speech is clear or not. I hate the the way I sound when I talk because I think I sound weird. I can hardly understand myself, so goodness only knows what other people hear.
You make my limbs behave in unexpected ways, especially my arms. My arms will fly out whenever you tell them to, even if I’m in a busy environment, which is not good at all! I am very wary about going into busy or crowed places because I don’t want to hit something or someone. I worry almost all the time about this, because you are really unpredictable. The worst part is when you do make me hit someone. When you do this, I curse you! You even make it difficult to say “Sorry,” because when I am embarrassed, my speech gets worse and my body flails more.
You make my muscles tighten up sometimes; that can be painful. Luckily you don’t do this a lot, only in one hand, but I have ways to reduce it. Sometimes you make using a computer difficult, whether I’m using my eyes or my feet. Recently, you make walking so much of a struggle that I have to have three people to help me at college sometimes. Every day is different with you.
You also affect my short-term memory. Someone will tell me something, then I have to ask what they said again because more often than not, I will have forgotten. This is incredibly annoying, because I feel foolish when I have to ask more than once.
Even though I have said all this about you, I wouldn’t be the same without you. You have played a huge part in my life, right from the very start. When you make my arm slap me around the face, I laugh because it is so typical for you. Sometimes you make it slap me really hard; that hurts. I don’t like you sometimes, but I couldn’t imagine my life without you. You are a part of me, but not the whole me!
You have helped teach me how to fight, how to be strong. Most of all, you are teaching me to be myself, so I thank you. I don’t know everything about you, and I don’t think I ever will, but I wonder what you will teach me next. Life is an interesting journey, especially when you are around.
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My name is Ailsa and I live with Cerebral Palsy, I wouldn’t say that my disability is that severe because I can do a lot of things and there are a lot of people who are worse off than me. I don’t have a huge amount of control over my hands, so I use my feet to operate my computer, I can do this quite easily. ~ My type of Cerebral Palsy is Quadriplegic (affects all four limbs) Athetoid (uncontrollable movements) Cerebral Palsy and it affects every muscle in my body, apart from my heart, luckily. ~ My Cerebral Palsy affects my right arm more than my left. I can’t use my right arm much at all due to it having increased movements and it being weaker. ~ I don’t see my disability as a be all and end all because if I come across a problem, I find a different way to do that task. For example; if come across a big wall, I know I can’t just carry on and go through it, I can find a way around it. ~ I have my own blog, which is called Brains on Wheels, where I write about my personal experiences surrounding disability. My blog posts vary, depending on what mood I’m in. ~ The URL to my blog is: ailsas.wixsite.com/brainsonwheels
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