Terrible Palsy......if a ten year old said that to you when you were trying to explain to his friend about having cerebral palsy, would you find it upsetting or would find it funny?
The honest answer : the emotional me found it flipant and hurtful, I rose to bait when my nephew said it. You can't play airball, he said because you have to throw the ball through a hole that's as small as the hole in Mummy's headrest....you just try me I replied....well you can't do this and you can't do that....and I had the same answer....you just try me, I bet I can do it.
It's pretty amazing really how I've adapted over the years even though I do say it myself. But it hasn't been an easy journey. It's been a long and arduous task to find ways to do every day things so that I could be an independent person. Things people take for granted like tying shoelaces, that was one of my biggest triumphs. I was 17. 17! When I was young and velcro was 'so' untrendy other kids could tie their shoelaces at eight or nine....I was still fighting with shirt buttons and screaming in the process....not a very nice experience for Mummy.
And when I started to enjoy cooking when I first lived on my own...experimenting with different contraptions, onion slicers, tomato slicers, the list went on. I cooked differently, fillet recipes turned into casseroles as I cut the meat before cooking it.
These are just examples and that I now don't even think about it, I get on with my life, just do things differently, although nobody would really notice. And if austen were a fly on the wall he'd see that, but it's difficult job to make kids understand so that they show kindness, sensitivety and compassion.
Terrible Palsy.......I tried to rationalise it, kids say what they mean so austen must have been thinking that it must have been terrible to have cerebral palsy. It's not terrible, it's not even different, because everyone is different whether it's a bald patch like Bart Simpson, a funny voice like Bo Selecta or big ears like old Prince Charley.
And I may not be able to catch a ball brilliantly, but I play a mean game of table tennis.....as regional champion at school, and I bet he didn't know that :-)
Wednesday 26 May 2010
Sunday 23 May 2010
Inside there's a scream waiting to come out
Yes it's true, very often there is a scream waiting to come out, or a feeling that I just want bang my head against a wall until I've got a gash big enough for blood to spill, oozing down my face in small rivers. I wonder sometimes whether I'd rather have that sort of pain than the constant pressure of bricks pressing against my temple.
You might have guessed by now that I've not had a very good couple of days. Friday 21st May it was 23 degrees and I was still in bed at 12 noon. Yup, even though you just wouldn't believe it I was STILL trying to get rid of that bastard of a migraine. After spending the previous evening trying to ignore it I sat in the cinema where I'd had my first date and concentrated on watching Robin Hood, but every time the arrows aimed and shot, my head felt the pain when they landed killing enemy.
So the by time I woke up the next morning and still felt the pain, I was feeling totally deflated and exhausted. I came downstairs and wrapped an iceblock in a tea towel, went straight back to bed and fell asleep. And when I next woke up it was 23 degrees and 12 noon....I'd missed the half of a a rare beautiful summers day. Slowly I made my may to kitchen, gently, trying to keep my head still so that I could make my first cuppa of the day. But in the process I got a knock on the door and the offer of a cup from my new neighbour who didn't seemed to mind that I was still in my pj's. So I went over to his house and sat with talking to his family and children, coooing over his new baby girl, who is absolutely gorgeous..... and I felt so chilled.....that just for a while I managed to forget about my headache....although I did worry a little that I was stinking to high heaven. They didn't seem to mind though and I spent a couple of relaxing hours there.
One month later 30th June
Due to the circumstances beyond my control, I was not able to finish this blog - but you get the picture of what a general week can be like sometimes. They describe epilepsy as being electric storms in the brain.....and it is excactly that. One big huge fuck off thunderstorm like the ones in Sydney that I experienced at christmas when the lightening cracked through the sky and you think it was going to open and swallow you whole.
You might have guessed by now that I've not had a very good couple of days. Friday 21st May it was 23 degrees and I was still in bed at 12 noon. Yup, even though you just wouldn't believe it I was STILL trying to get rid of that bastard of a migraine. After spending the previous evening trying to ignore it I sat in the cinema where I'd had my first date and concentrated on watching Robin Hood, but every time the arrows aimed and shot, my head felt the pain when they landed killing enemy.
So the by time I woke up the next morning and still felt the pain, I was feeling totally deflated and exhausted. I came downstairs and wrapped an iceblock in a tea towel, went straight back to bed and fell asleep. And when I next woke up it was 23 degrees and 12 noon....I'd missed the half of a a rare beautiful summers day. Slowly I made my may to kitchen, gently, trying to keep my head still so that I could make my first cuppa of the day. But in the process I got a knock on the door and the offer of a cup from my new neighbour who didn't seemed to mind that I was still in my pj's. So I went over to his house and sat with talking to his family and children, coooing over his new baby girl, who is absolutely gorgeous..... and I felt so chilled.....that just for a while I managed to forget about my headache....although I did worry a little that I was stinking to high heaven. They didn't seem to mind though and I spent a couple of relaxing hours there.
One month later 30th June
Due to the circumstances beyond my control, I was not able to finish this blog - but you get the picture of what a general week can be like sometimes. They describe epilepsy as being electric storms in the brain.....and it is excactly that. One big huge fuck off thunderstorm like the ones in Sydney that I experienced at christmas when the lightening cracked through the sky and you think it was going to open and swallow you whole.
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