March in Cerebral Palsy Awareness Month. In a weak attempt to acknowledge my ascribed status [not in the mood to go into it, just Google it] I am making this post [and hopefully posting it before April].
A statement that always grates on me is "I hope they find a cure for CP". Beyond the fact that the more likely path is that science will stop kids from getting CP (and leave those who have it to just have it [me] will just die out) if I was given a cure I'm not sure I'd know how to function. People see my limp, they don't know that my eyelids are uneven, that I burn energy like I'm running 24/7, that almost everything that my nervous system touches is effected. And it's been effected since I was born, and this is my normal. Imagine that people randomly started telling you, don't chew food correctly [I'm just going to apologize now for that one person who has been told/has difficultly chewing/whatever and finds this analogy offensive.] you thought you were chewing along just fine, but you give it a try. You find it takes you longer to eat, and you're generally uncomfortable, and it's mainly to make others around feel more comfortable. You don't see the worth in it, why bother? [FYI doing stuff solely to make others comfortable sucks.]
Now how this imaginary cure business would affect my bass playing: Tone is in your fingers, or as I'm inclined to believe, your nervous system. With a cure I'd lose my tone, because the way I move upset others. Yes, my CP wears on my joints, but no cure will take away the damage that has been done. In the end I'm happy with my body, others will have to look at it for a moment, but it's the only body I have for life.
[This is only my thoughts, as someone with mild CP. If you want to know what someone else with CP thinks, ask them. Not their caregiver, them.]
A statement that always grates on me is "I hope they find a cure for CP". Beyond the fact that the more likely path is that science will stop kids from getting CP (and leave those who have it to just have it [me] will just die out) if I was given a cure I'm not sure I'd know how to function. People see my limp, they don't know that my eyelids are uneven, that I burn energy like I'm running 24/7, that almost everything that my nervous system touches is effected. And it's been effected since I was born, and this is my normal. Imagine that people randomly started telling you, don't chew food correctly [I'm just going to apologize now for that one person who has been told/has difficultly chewing/whatever and finds this analogy offensive.] you thought you were chewing along just fine, but you give it a try. You find it takes you longer to eat, and you're generally uncomfortable, and it's mainly to make others around feel more comfortable. You don't see the worth in it, why bother? [FYI doing stuff solely to make others comfortable sucks.]
Now how this imaginary cure business would affect my bass playing: Tone is in your fingers, or as I'm inclined to believe, your nervous system. With a cure I'd lose my tone, because the way I move upset others. Yes, my CP wears on my joints, but no cure will take away the damage that has been done. In the end I'm happy with my body, others will have to look at it for a moment, but it's the only body I have for life.
[This is only my thoughts, as someone with mild CP. If you want to know what someone else with CP thinks, ask them. Not their caregiver, them.]
