Another of my older pieces of writing to share this evening. This was originally written at the beginning of December 2004
I’d Of Had To Miss The Dance
I have Cerebral Palsy (CP) or to give it the exact diagnosis Spastic Cerebral Palsy Diplegia. I’ve had it my entire life and I’ve had to use a wheelchair to a certain extent my entire life. I think I find it relatively easy to deal with the majority of the time because I have never known any different. I’ve known what it’s like to be able to walk a slightly longer distance than I can now but I’ve never known what it is like to run or jump/ I have known what it is like to be able to walk without the fear of falling over and hurting yourself that I sometimes feel when walking in crowds now. But that was when I was six years olds and all six year olds are invincible, nothing will happen to them, they won’t get hurt. Or so they think.
Now though I am 22 and I know I’m not invincible. I have suffered the scraped knees, bumps on the head and suspected broken bones that can result from the falls which are a part of day to day life if your balance is as bad as mine is. But I don’t let that fear stop me. That fear is a very healthy thing for me, I believe, but only because it doesn’t stop me. Instead it keeps me safe to a certain extent. Because I choose to deal with my CP by being very upfront about it, by viewing anything that can help me as a good thing and simply getting on with it.
Until I was 17 I used to walk the short distances I can handle unaided and spend the rest of the time in my wheelchair. I would grab onto the walls, the furniture or other people who happened to be around whenever I felt I was losing my balance. But I would always be too frightened to walk very much even though I wanted to in case I would fall so I would pretty much be in my wheelchair unless my parents or someone else in authority insisted that I walked. Then at 17 I got a rollator (walking frame) again for the first time since I was five or six. I also took a few minutes to explain to people that would be around me when I was walking about my limitations – to make sure they knew not to cut infront of me suddenly (I can’t stop suddenly without falling although my walker helps a lot with this)., to make sure they knew that sometimes i do just fall for no apparent reason because that is part of what CP does. And I wouldn’t say that I’ve completely gotten over my fear, I’m still nervous the first few times I walk in a new place or if I don’t feel 100% well. But with that walker and by telling people about my CP and my walking I am able to feel that fear – but do it anyway.
When it comes to acceptance I believe that I’m as close to fully accepting my disability as I ever will be. Like i said above, i have never known anything other than having CP and although my condition may appear to others to have gotten worse, it is not something I have had to struggle to accept because that deterioration was something I choose to allow to happen and I know that in a way it was a good thing. I began to use my wheelchair so much more because it allowed me to do more, I didn’t get so tired and I could get to classes at uni quicker. The problem that has come about as a result of that is that I can no longer walk as long distances as I used to be able to. So it could perhaps be said that my CP is worse. But I know that it’s not really, and I know that if I worked at it I could get it back to a certain extent. I am working on my walking to make sure I don’t lose the amount that I still have and I’m trying to gradually increase the number of times a week that I walk short distances. However I’m also a realist and I fully realise that my CP will never go away and there will always be decisions to be made and opportunity costs to weigh up about the way I live my life with my disability. So walking will always be very tiring for me, will make my legs hurt after a few minutes and be slow. Using my wheelchair solves most of those problems for me (and if i use my powerchair the speed problem is solved too) but the cost is that sometimes I use it when I could walk and then I gradually may lose some of my ability to handle distances walking, i may have more pain or i begin to walk slower. But if I’m not so tired and I can live a fuller more active life simply by spending 95% of my time in my wheelchair then it’s a price I’m willing to pay.
I think that shows how much I have accepted my disability, something whihc some others might not understand me saying. I know some people who have CP and walk all the time with a mild limp or poor balance or whatever who say they hate having it and I think that maybe that stems from how well (or not) they have been able to accept the hand that life has dealt them. Obviously I am not in any position to be able to judge people and say for definite that is why but from my experiences and what I’ve seen I would assume that is why.
I use humour in a lot of situations as a way of helping to deal with it. I can’t remember the exact quote but I once read something which said the one way to definitively take away the power tha insules and derogative terms have over you when someone tries to use them to get at you is to use them yourself. If i refer to myself as a spastic or a cripple it isn’t hurtful any more and even if someone says it to you meaning it to hurt you it won’t – it’s lost its power and it once again appears as just one little word which can’t do anything to hurt you. and that’s how it should be.
But my using terms like spastic and cripple for humour (like telling my sister I was a club class cripple today because I got upgraded to club class on the train) is something which most able-bodied people don’t understand. One of my counselors decided that it was a self protective mechanism that really the terms are hurtful to me and I must hate them i just pretend to find them funny as a way of avoiding having to feel that pain. she couldn’t accept that that wasn’t the case and so I never went back to her again.
The last time someone called me a spastic and actually meant it as derogatory (my sister called me a spastic for a joke the other day), I just smiled at them and said “that’s right I am a spastic, I’ve got that form of CP.” and they were just completely thrown off by that.
Spastic. S P A S T I C. Cripple. C R I P P L E. Two words which are meant to hurt me, which are meant to upset me. But do you know what both of those words represent to me… seven little letters in each of those words which spell out a whole lot of fun and laughter.
I’ve said it before, and I’m sure that I’ll say it again. Political Correctness sucks… humour and laughter are the only way forward. Because there are times when if you didn’t laugh about all the rubbish that life with CP throws at you, you would cry and I’d much rather spend my days laughing than crying!
Of course there I would be lying if I gave the illusion that there aren’t days when it gets me down and I need a good cleansing cry to get it out of my system. But those days are now (thankfully) rare and the giggles far out number the tears. I think you need to have the down days because how else would you appreciate the good days if you didn’t have bad days to compare them too? I really do believe that you don’t know what you’ve got till it’s gone.
If i was ever offered the chance for someone out there to wave a magic wand and make it so I had never had CP i would turn them down. It’s been one of the most formulative experiences of my life – I like who i am and I wouldn’t be the girl who sits at this computer writing this if I wasn’t disabled. CP is just a part of my life, it’s a very important part of my life which I’m proud to have, but it doesn’t rule my life totally it just influences it – for the better I believe. It’s like I wrote in my CP Rocks poem, how would I be me if I didn’t have CP?
I think a lot of people can understand that. Everyone has painful or difficult experiences which at the time you wish hadn’t happened but afterwards time brings the wisdom to see that they had to happen for them to grow as a person and become the person they are today. What I think a lot of people would have difficulty accepting is this…
If I found a magic lamp, rubbed it and out popped a genie offering to grant me three wishes like in Aladdin and suggesting that one of the wishes were to make it so I had had cp up until this point but that I no longer had it and from this day forward I would be able-bodied, I would turn him down.
I like who I am – wheelchair, muscle spasms, back pain and all – and I wouldn’t want to change it for the world.
So many things I have done and people I have met I wouldn’t of had the opportunity to do or meet if I hadn’t had CP and so for that I am grateful that I’ve got it.
I think Garth Brooks said it best in his song The Dance
“This life is best left to chance
I could have missed the pain
But I’d of had to miss the dance.”