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capri0mniBack on September 5, 2008, I was moved to write this, to (maybe) counteract some misconceptions my friends and acquaintances may have about what it's like being me:
Most of you on myfriends reading list know, by now, that I have Cerebral Palsy. I'm not sure how many of you know exactly what that is (in other words, I can't remember if I've ever exactly explained it to any of you, either in this journal or in person). So here goes:
"Palsy" can mean "Paralysis," but it can also just mean "lack of control;" specifically, with CP, it's the skeletal muscles we're talking about, mostly -- the ones we use to move through the world -- not the heart, or stomach, or reproductive muscles, or any of that fun stuff. "Cerebral" means "brain." So "Cerebral Palsy" means that the reason for lack of control is in brain; all the muscles, nerves and bones themselves are perfectly fine. A person's CP effects the way they move through the world, and it's just the way the brain is wired, and it doesn't get better, and it doesn't get worse -- it just is. That, in ordinary English (rather than Doctoreze), is the definition of "Cerebral Palsy."
Because no two people are alike, and because no two brains are alike, and because there are a near infinite number of things that can go wrong in those brains between conception and birth, no two cases of CP are exactly alike, either. It's not a diagnosis, it's just a broad definition. And the term says more about what it's not than what it is. And it's a condition, not a disease -- don't call it that.
I am neither more nor less sensitive to pain (or touch) than any other random person on the street. And it's the same with my strength: some muscles are out of shape because I don't use them much (because it's just easier not to deal with them), and some of my muscles are probably a lot stronger than average, because I use them for just about everything -- I'm not weak, I'm just a spaz ;-). Sometimes, in some people, the bit of chaos that causes the message center to go kaflooey happens during, or shortly after, birth. With me, I probably came out of the womb this way (Frankly, I don't remember. I was so young, back then).
Cerebral Palsy, because it starts in childhood, and has an effect on how the kids who have it grow up, is broadly classified as "a developmental disorder," and is lumped together (broadly) with Down Syndrome and Autism, which just makes me want to "GRAH!" at the "experts."
My aide's other regular client is a four-year old boy who is also diagnosed with CP. His CP makes his muscles floppy, including the muscles involved in speach, so he's just now learning to talk, and it takes a lot of concentration to get a sound out. Lucky for him, Audrey met me first, and knows that CP does not equal 'retardation." Also lucky for him, she's spent most of her adult life working with and training horses, so she's comfortable "reading" nonverbal communication. But this kid's nursery school teacher is convinced that CP does mean he's retarded, so she's dumbing everything down for him, and feeding him the answers. One time, the teacher was trying to get him to play a game with two options to choose from, when Audrey had been playing the same game at home with four. She tells the teacher: "You know, he's not paying attention because he's bored." The teacher responds with: "Oh, no! He's not bored, he's just confused. Let's make this game simpler."
Head, meet Desk. I have a feeling you will soon be well acquainted.
(Back when I wrote my original post, WebMD.com's entry on CP just said that it causes a significantly higher percentage of mental retardation, but with no hard numbers. I went back to the site recently, and now it says that "some level of" retardation occurs in between a third and a half of all kids with CP. That means a half to two-thirds of folks with CP have no retardation at all, of course. But I'm still skeptical it's that high, especially if the people coming up with these stats are misreading boredom as confusion)
Anyway, I say all this as a preamble to explain why, most of my life, I've argued that CP has no effect on my thinking or perception of the world at all -- that it's a purely physical thing. But, this argument is getting harder to maintain, especially since I do not believe that there is a Mind/Body dichotomy, or in discrete "God-Given" soul. And if I can freely admit that growing up in a specific time and place, and with the parents that were mine, influenced my concept of who I am, and my place in the world, then, surely, I can admit that growing up in this specific body also influenced this understanding. How can it not?
---
Back when I was growing up and first getting diagnosed and going through physical therapy ('60s and '70s), they didn't have the brain scan technology they do now. Now, 'they' think that "my kind of CP" is probably caused by faulty myelin sheathing in the ol' cerebellum, like a house with faulty insulation in its electrical system, and from what I can figure out from reading about what myelin does, I can see how that could be, based on what it feels like, inside my body:
I have intention to do one thing (such as balance, or stand, or take a step), but as my intended thought to move this leg in this direction is also accompanied by unintended signals to contradictory muscles in other parts of the body things get complicated, and I often have to slow down, and break down one intention into several parts, and consciously stop one movement before starting the next. So here's my one analogy I came up with, to get a handle on what my CP subjectively, psychologically, feels like:
Imagine trying to open your door, and go inside your house. Simple, right? Now, imagine that your arms are full of a dozen loose oranges, and you have no place to set them down for a moment ('cause you can't detach part of your body and put it aside until you're done). And you can't drop any ('cause that would be akin to your body just ceasing to function, and falling into chaos).
So reaching out to turn the doorknob is interrupted several times in order to catch a threatening orange avelanche with your chin, and then you have to pause, and rearrange your load.
Opening the door and going inside is going to take a lot longer for you than it is for your neighbor, who's carrying his oranges in a conveniently handled basket, and you're going to be a lot more tired when you finally do get inside... And the thought of making dinner will probably leave you with a desire to order a pizza, instead.
But you're not "fatiqued" in the senses we usually think of it. It's not that your arms are too weak to carry the oranges. And it's not that you don't have as much stamina as your neighbor (you may even have more, all things considered -- he might get tired and give up at attempt #60, and you can go all the way to #100, and not think it's anything unusual). It's just that you have a lot more to do to accomplish the same task.
Which is why I was so annoyed back in college, when I happened to look up "cerebral palsy" in a medical encylopedia, just out of curiosity. The fact that I was in the library was the only thing that kept me from shouting "Oh, FUCK YOU!" when I read the official medical description (used by doctors to determine diagnoses, and advise patients on treatment). It said that Cerebral Palsy is "severe and debilitating." 'Debilitating' struck me as particularly insulting (as I said before -- no two people's CP are ever the same, so it may be debilitating for some. But I think it's unfair and inaccurate to use that term as a broad, general starting point).
So -- yes. How this all effects my "Idea of I." I don't know what the Self or Ego really feels like to those with normative body-brain connections, but I've read plenty of literature and mythology where the mind and/or soul is described as a discrete and immutable "pearl," (that maybe resides in the pituitary, or maybe the heart, or right next to the adrenal gland, on top of one of the kidneys), or a tiny, bright, single spark of energy. I read those poetic metaphors and think: "Yeah. That's nice, and all, but doesn't feel right..."
You see, for me, the psychological space between imagining an action and carrying it out (that "rearranging of oranges") often feels like a negotiation, or (on bad days) a knock-down, drag-out fight. It's not that I feel like I have "mulitple personality," per se (even though I've caught myself addressing different body parts by pet names) -- my sense of "Ann-ness" is fairly coherent, and consistant. But at the same time, when I'm negoiating, I'm negotiating with some-(entities).
*sigh.*
It's hard to talk about when there isn't a shared language... It's just -- there is the "Executive function" that I've heard neurologists on science shows talk about. But "making the call" is more like a "call and response" song: in someone with a normal body-brain connection, the call out to the right hand to pick up the hairbrush is answered only by the right hand picking up the hairbrush. In me, however, it's also answered by my feet curling, and my back "hyper-extending." Then, I have to put down the hairbrush, consciously relax my leg and back muscles, push myself back into my seat, and start over.
So while there *is* a "Self" it feels more like it's an identity reached through lifelong consensus, rather than a single monarch giving orders from on high. Or maybe it's like a sports team -- a particular team may have a recognizable "personality" or "Culture," and a particular team psychology may be consisitant and coherent over a long period of time, even as different team members leave and join. But that single identity arises out of multiple points, rather than coming from a single "boss."
You know?
No?
*sigh* What I said before about lack of a shared language.
Oh, well, I just felt like I needed to "talk" it out...
Most of you on my
"Palsy" can mean "Paralysis," but it can also just mean "lack of control;" specifically, with CP, it's the skeletal muscles we're talking about, mostly -- the ones we use to move through the world -- not the heart, or stomach, or reproductive muscles, or any of that fun stuff. "Cerebral" means "brain." So "Cerebral Palsy" means that the reason for lack of control is in brain; all the muscles, nerves and bones themselves are perfectly fine. A person's CP effects the way they move through the world, and it's just the way the brain is wired, and it doesn't get better, and it doesn't get worse -- it just is. That, in ordinary English (rather than Doctoreze), is the definition of "Cerebral Palsy."
Because no two people are alike, and because no two brains are alike, and because there are a near infinite number of things that can go wrong in those brains between conception and birth, no two cases of CP are exactly alike, either. It's not a diagnosis, it's just a broad definition. And the term says more about what it's not than what it is. And it's a condition, not a disease -- don't call it that.
I am neither more nor less sensitive to pain (or touch) than any other random person on the street. And it's the same with my strength: some muscles are out of shape because I don't use them much (because it's just easier not to deal with them), and some of my muscles are probably a lot stronger than average, because I use them for just about everything -- I'm not weak, I'm just a spaz ;-). Sometimes, in some people, the bit of chaos that causes the message center to go kaflooey happens during, or shortly after, birth. With me, I probably came out of the womb this way (Frankly, I don't remember. I was so young, back then).
Cerebral Palsy, because it starts in childhood, and has an effect on how the kids who have it grow up, is broadly classified as "a developmental disorder," and is lumped together (broadly) with Down Syndrome and Autism, which just makes me want to "GRAH!" at the "experts."
My aide's other regular client is a four-year old boy who is also diagnosed with CP. His CP makes his muscles floppy, including the muscles involved in speach, so he's just now learning to talk, and it takes a lot of concentration to get a sound out. Lucky for him, Audrey met me first, and knows that CP does not equal 'retardation." Also lucky for him, she's spent most of her adult life working with and training horses, so she's comfortable "reading" nonverbal communication. But this kid's nursery school teacher is convinced that CP does mean he's retarded, so she's dumbing everything down for him, and feeding him the answers. One time, the teacher was trying to get him to play a game with two options to choose from, when Audrey had been playing the same game at home with four. She tells the teacher: "You know, he's not paying attention because he's bored." The teacher responds with: "Oh, no! He's not bored, he's just confused. Let's make this game simpler."
Head, meet Desk. I have a feeling you will soon be well acquainted.
(Back when I wrote my original post, WebMD.com's entry on CP just said that it causes a significantly higher percentage of mental retardation, but with no hard numbers. I went back to the site recently, and now it says that "some level of" retardation occurs in between a third and a half of all kids with CP. That means a half to two-thirds of folks with CP have no retardation at all, of course. But I'm still skeptical it's that high, especially if the people coming up with these stats are misreading boredom as confusion)
Anyway, I say all this as a preamble to explain why, most of my life, I've argued that CP has no effect on my thinking or perception of the world at all -- that it's a purely physical thing. But, this argument is getting harder to maintain, especially since I do not believe that there is a Mind/Body dichotomy, or in discrete "God-Given" soul. And if I can freely admit that growing up in a specific time and place, and with the parents that were mine, influenced my concept of who I am, and my place in the world, then, surely, I can admit that growing up in this specific body also influenced this understanding. How can it not?
---
Back when I was growing up and first getting diagnosed and going through physical therapy ('60s and '70s), they didn't have the brain scan technology they do now. Now, 'they' think that "my kind of CP" is probably caused by faulty myelin sheathing in the ol' cerebellum, like a house with faulty insulation in its electrical system, and from what I can figure out from reading about what myelin does, I can see how that could be, based on what it feels like, inside my body:
I have intention to do one thing (such as balance, or stand, or take a step), but as my intended thought to move this leg in this direction is also accompanied by unintended signals to contradictory muscles in other parts of the body things get complicated, and I often have to slow down, and break down one intention into several parts, and consciously stop one movement before starting the next. So here's my one analogy I came up with, to get a handle on what my CP subjectively, psychologically, feels like:
Imagine trying to open your door, and go inside your house. Simple, right? Now, imagine that your arms are full of a dozen loose oranges, and you have no place to set them down for a moment ('cause you can't detach part of your body and put it aside until you're done). And you can't drop any ('cause that would be akin to your body just ceasing to function, and falling into chaos).
So reaching out to turn the doorknob is interrupted several times in order to catch a threatening orange avelanche with your chin, and then you have to pause, and rearrange your load.
Opening the door and going inside is going to take a lot longer for you than it is for your neighbor, who's carrying his oranges in a conveniently handled basket, and you're going to be a lot more tired when you finally do get inside... And the thought of making dinner will probably leave you with a desire to order a pizza, instead.
But you're not "fatiqued" in the senses we usually think of it. It's not that your arms are too weak to carry the oranges. And it's not that you don't have as much stamina as your neighbor (you may even have more, all things considered -- he might get tired and give up at attempt #60, and you can go all the way to #100, and not think it's anything unusual). It's just that you have a lot more to do to accomplish the same task.
Which is why I was so annoyed back in college, when I happened to look up "cerebral palsy" in a medical encylopedia, just out of curiosity. The fact that I was in the library was the only thing that kept me from shouting "Oh, FUCK YOU!" when I read the official medical description (used by doctors to determine diagnoses, and advise patients on treatment). It said that Cerebral Palsy is "severe and debilitating." 'Debilitating' struck me as particularly insulting (as I said before -- no two people's CP are ever the same, so it may be debilitating for some. But I think it's unfair and inaccurate to use that term as a broad, general starting point).
So -- yes. How this all effects my "Idea of I." I don't know what the Self or Ego really feels like to those with normative body-brain connections, but I've read plenty of literature and mythology where the mind and/or soul is described as a discrete and immutable "pearl," (that maybe resides in the pituitary, or maybe the heart, or right next to the adrenal gland, on top of one of the kidneys), or a tiny, bright, single spark of energy. I read those poetic metaphors and think: "Yeah. That's nice, and all, but doesn't feel right..."
You see, for me, the psychological space between imagining an action and carrying it out (that "rearranging of oranges") often feels like a negotiation, or (on bad days) a knock-down, drag-out fight. It's not that I feel like I have "mulitple personality," per se (even though I've caught myself addressing different body parts by pet names) -- my sense of "Ann-ness" is fairly coherent, and consistant. But at the same time, when I'm negoiating, I'm negotiating with some-(entities).
*sigh.*
It's hard to talk about when there isn't a shared language... It's just -- there is the "Executive function" that I've heard neurologists on science shows talk about. But "making the call" is more like a "call and response" song: in someone with a normal body-brain connection, the call out to the right hand to pick up the hairbrush is answered only by the right hand picking up the hairbrush. In me, however, it's also answered by my feet curling, and my back "hyper-extending." Then, I have to put down the hairbrush, consciously relax my leg and back muscles, push myself back into my seat, and start over.
So while there *is* a "Self" it feels more like it's an identity reached through lifelong consensus, rather than a single monarch giving orders from on high. Or maybe it's like a sports team -- a particular team may have a recognizable "personality" or "Culture," and a particular team psychology may be consisitant and coherent over a long period of time, even as different team members leave and join. But that single identity arises out of multiple points, rather than coming from a single "boss."
You know?
No?
*sigh* What I said before about lack of a shared language.
Oh, well, I just felt like I needed to "talk" it out...
no subject
Date: 2011-05-16 01:05 am (UTC)no subject
Date: 2011-05-16 01:49 am (UTC)Yeah... It is kinda cool. I sometimes wonder if my journey to atheism by way of polytheism was influenced by my exprience of the multi-faceted self...
I defintely think the brain gets too much credit as the seat of Self-ness/Being the Boss, especially since, evolutionarily speaking creatures developed heart-pumping systems long before they evolved brain-like systems (qv the jellyfish). I think the brain is more like a central bulletin board in a massive appartment building, where all the individual residents leave messages for each other than it is like an author or boss creating those messages... if it were to be damaged or gone, things would be fubar, but that doesn't prove it's the starting point, or sine qua non of consciousness.
no subject
Date: 2011-05-18 01:08 am (UTC)Secondly, I will _try_ not to address you as 'y'all', and if I do, feel free to whack me one. ;)
no subject
Date: 2011-05-18 02:13 am (UTC);)
no subject
Date: 2011-05-18 03:18 am (UTC)Language is weird. But fun! I know very little about Plain Speech but I would happily learn!
no subject
Date: 2011-05-30 11:24 pm (UTC)I've said a few times that I'd love to be a guest lecturer at a medical school. I'd ask the students to tell me about CP, and I'd write their responses on the board behind me.
And then I'd tell them, "Oh, BTW, I have CP!" and watch their reactions. Because if you met me, you'd never suspect. Doctors have met me and never suspected! And I didn't even know about it until last year, even though I was diagnosed back in 1978. I was never told, because my doctor didn't want to slap a label on me that would "follow you for the rest of your life".
I'd love to meet that preschool teacher and tell her, "Hi, I have Cerebral Palsy. And this is what CP (can, sometimes) looks like!".
no subject
Date: 2011-05-30 11:39 pm (UTC)Because the social stigma is worse, obviously, than having information, and possibly access to support groups, or a chance to talk about it...
^points to icon^
no subject
Date: 2011-05-30 11:44 pm (UTC)Wait... You were diagnosed back in '78, went through therapy and surgery and you were never told why?
No, I knew that my heel cord was too tight and I needed surgery. I was never told the CP diagnosis. My doctor told me that he didn't want to "saddle you with a diagnosis that would follow you for the rest of your life". He told me this last May when I went back to see him because I was having problems with my leg (pain, tension). He gave me some exercises to do and all is now well.
Because the social stigma is worse, obviously, than having information, and possibly access to support groups, or a chance to talk about it...
^points to icon^
No, it wasn't really that bad. I can "pass".
What would have been nice is a diagnosis of the learning disabilities (oh hi executive functioning problems, so nice to know you!) and the ADHD that I've only recently begun to realize I have.
But, hey, life's not so bad. :p
no subject
Date: 2011-05-30 11:48 pm (UTC)Yeah, I know... It's just the arrogance of "experts" who decide for us what we can handle and what we can't.
You know?
no subject
Date: 2011-05-30 11:49 pm (UTC)Yeah. But then I found out that if the insurance company finds out about the CP, I will become permanently uninsurable. And that made me think that maybe that doctor was pretty smart after all, because he never wrote "CP" down anywhere. KWIM?
no subject
Date: 2011-05-31 12:33 am (UTC)... Yeah, well, the tyrrany-cum-madness that passes itself off as the Insurance Industry is a whole 'nother snark altogether...
no subject
Date: 2011-05-31 01:26 am (UTC)I know. :(