Just for the record: I have cerebral palsy.

[capriuni]

Most of you on my friends 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).

The same brain that gave me CP also gave me my love of language, and art, and my sense of humor. So, no, frankly, I don't ever wish I were born "normal." Yes, life would be a lot easier if I could walk and get around as effortlessly as most people. Chances are, my life would also be a lot easier if I were born with a penis, but I'd like to keep my vagina, anyway.

My relationship with my body is kind of like George Bailey's relationship with his house, in It's a Wonderful Life. On the bad days, when I'm frustrated, and cranky, I can swear up a blue streak at the wonky banister, and the doors that won't close, and the drafty windows. But in the end, this body is my home. And even on the worst days, I wouldn't trade it for Mr. Potter's mansion. (So to speak)

---

There (That took a lot longer to write than I expected)!

Next up in this series, I may write about what, exactly, is most frustrating about living with CP (hint: It mostly boils down to the fact that I can't actually whomp people over the head with a Cluebat, even when they really need a whomping).

Comments

[scarfman.livejournal.com]

Thanks for the primer. For whatever it may be worth, I'd thought "palsy" meant tremors, not paralysis.

[capriuni.livejournal.com]

You're more than welcome. I figure sometimes, it's good to volunteer this information out of the blue, especially if people might be too embarrassed to ask. And even though CP is different for everyone, knowing the basics (like, for the most part, it neither hurts nor makes us fragile), will make meeting someone else with CP less awkward.

Yeah. I paraphrased that palsy bit from the medical encyclopedia entry link I got through a Google Search. So doctors may use it to mean paralysis, but it basically means the whole spectrum of "less control than there should be." And tremors certainly fall in there somewhere.

[theta-g.livejournal.com]

Very well put. And I did always want to know that stuff. You should keep a bookmark of that permalink and hand cards out to the clue-needy ;-)

[capriuni.livejournal.com]

Thank you. I think I will stick it in memories. ... Or maybe (also) put a link to this on my Profile Page.

For the Clue Cards for the Awareness Impaired, on the other hand, I think I'll just make up a list of Good Manners to use When You're with a Gimp -- tips that can be easily printed on three-by-fives.

[spiralsheep.livejournal.com]

My friend K has CP (and jokingly refers to herself, to her friends, as a "spaz"). She can walk but not well because her father beat her regularly for being "clumsy", i.e. for having CP, and he did her permanent damage (including crippling one of her feet and, yes, "crippled" is her choice of self-definition to friends).

Your description is outstandingly clear. Thank you.

As this post isn't locked, can I assume I can link to it?

[capriuni.livejournal.com]

Yes. Linking is fine -- the more general education is out there, the easier it gets for everybody.

Your friend K's story is heartbreaking, and underlines one of the unique social complications of growing up with a disability* -- it's the one (visible) minority group where you don't share the experience with your own family, as the rule, rather than the exception. And none of the important decision-makers in your life were ever in your shoes. This is true for sexual and gender orientation minorities, also, but it's a lot easier for those kids to "pass" as normal to survive until they get out.

*(And CP is the most common reason for disability that is there throughout growing up)

[snowgrouse.livejournal.com]

I love your description and the fact that you're fine and proud of what you are, because it's you:). And I probably phrased that wrong (because that's *my* brain condition at work there, damn it), but you know what I mean. There are so many people who emo over what they are and keep wanting to chang what can't be changed, so I look up to anyone who can just sit down and say "look, this is what I am--you may call it a disability, but I'm fine as I am, thankyouverymuch, deal with it". It is of the good and v. refreshing.

[capriuni.livejournal.com]

You phrased that just fine!

And I give all credit for my self-esteem to my mother. Her congenital condition was Social Iconoclast, and along with helping me learn to read and count, she sat me down and gave me lessons in how to stick it to authority figures.

She was the one who told me that it's not my CP that makes me disabled, it's the lack of a damned ramp up the steps to City Hall (she told the mayor, too). I hate to think where I'd be today, if I had an ordinary mother.

[rob-t-firefly.livejournal.com]

Thank you so much for sharing!

[capriuni.livejournal.com]

You're very welcome!

[eve11.livejournal.com]

here from spiralsheep... Thanks for this definition. One of my best friends in college had CP. She had the "wiggly" kind (spastic?) and also a bit of balance problems-- it took her a long time to learn to walk as a kid. And apparently she used that time to become a math genius :) She had tremors and really bad handwriting and was no good at playing pool ;) but she didn't let any of that stop her at all. After a while you didn't even notice her shakiness (there were several Colleens in our group of friends and, her being the less crazy personality, eventually we'd distinguish her by referring to "normal Colleen" ;) ). I think I knew her for a few years before I even asked what her disability was. We were the "math chicks" in college; she was one of my main inspirations to follow my passions and just go with the strange-crazy-mathphile person I was :)

[capriuni.livejournal.com]

Hello, there (I think I've seen you on some of spiralsheep's comment threads, yeah)!

Anyway, further definitions: Sound to me like your friend Normal Colleen had Ataxic CP -- low muscle tone, poor balance, and shaky -- there's also a tendency to have poor depth perception (another reason why pool would be frustrating).

So, here we go:

Spastic CP -- one or more tight muscle groups (always contracting, never gets the message to "cool it"): stiff, jerky movement (Sometimes, sudden), and trouble shifting from one position to another. (80% of cases, usually).

Athetoid -- slow, involentary, movement, usually of the face, mouth, trunk, sometimes hands and arms, which can make speaking and eating diffecult, and often gets confused with mental retardation, which is really frustrating when the person trying to speak is an absolute genius. (on the upward side of 10%)

Ataxic -- What I described above that your friend probably has (on the downward side of 10%)

Mixed -- What it says on the tin. According to one "Ask a Doctor" website (which, when you read the fine print, you discover is sponsored by a law firm, so take with a grain or ten of salt), about 10% of people with CP are mixed. I think it's probably more, 'cause real people don't fit as neatly into pegholes as easily as doctors and lawyers would wish.

Each of these types of CP can be further defined with Latin-Greek terms describing what parts of the body's involved. And they all fall anywhere along a spectrum from "Barely Noticeable" to "Barely Functioning." Being stressed and tired, and/or overly excited makes things more diffecult. Being relaxed, rested and happy makes things easier, so every day can be different. ...But hey, welcome to the human condition.

[eve11.livejournal.com]

Ah, okay, she had little bits of each kind-- "mixed", I guess. Mostly I guess the athetoid and ataxic kind, I just forgot the types. Thanks for the clarification.

[capriuni.livejournal.com]

Hey, no problem. I've put a link to this post on my profile page, as a service to general education, so I'll probably be visiting this thread as time goes by, and adding to it as I learn stuff, too.

I've found, irl, that if I can answer the basic curiosity I know people have, right off the bat, it really cuts down on the stares and awkward silences. And even if passersby to my journal don't actually meet me in person, there's a fairly good chance they'll meet someone else, so ... yeah, being a proactive proxy, and all that.