Just call me Sparks...
Mar. 23rd, 2012 06:20 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
brightrosefoxYou know, I really wonder...
There is so much apparent research about Cerebral Palsy in children...
Where are the studies on adults? Who wonders what happens when those children grow up? What studies are being conducted on the adult patients who must live as such?
And I mean the mild cases, like me. The ones who can talk and walk and function well enough. We're still here. We're still damaged. Hello there!
Who wants to look at our mildly to moderately damaged brains? Who wants to see what kind of neural pathways have died and reformed and rebuilt and remapped over decades of life? Who wants to figure out the various comorbid disorders, and oh there are so many? Anxiety disorders. Depression. Seizures. Chronic Pain. Joint problems. Nerve problems. Sensory problems. Hypersensitivity. Obsessive and compulsive disorders. Personality disorders. Neurological problems. Neuromuscular problems. Neurobiological disorders. Endocrine problems. Skin problems. And so on, seriously, it's a long long list.
I really want to know. Where are those doctors? I want to be their test subject. I spend so much time with my brain and I barely know it. Nearly thirty-three years, and what the hell happened to me? I mean, besides the extremely premature birth, the collapsed lungs, and the periventricular leukomalacia, of couse. Hand-wave.
The last time I saw my brain was from an MRI ten years ago. Think about what has happened since then. Oh, my. So much sparking in my brain, all those neurons dancing, all those holes being eaten by seizures and pain and mental sicknesses. I want to be committed to Sparkle Motion, but only the right kind. For science.
I want to be a science experiment. I want to donate my body to science dinner, as Dr. Zoidberg would say.
Johns Hopkins and NIH are Metro accessible, after all. Thinking, thinking.
There is so much apparent research about Cerebral Palsy in children...
Where are the studies on adults? Who wonders what happens when those children grow up? What studies are being conducted on the adult patients who must live as such?
And I mean the mild cases, like me. The ones who can talk and walk and function well enough. We're still here. We're still damaged. Hello there!
Who wants to look at our mildly to moderately damaged brains? Who wants to see what kind of neural pathways have died and reformed and rebuilt and remapped over decades of life? Who wants to figure out the various comorbid disorders, and oh there are so many? Anxiety disorders. Depression. Seizures. Chronic Pain. Joint problems. Nerve problems. Sensory problems. Hypersensitivity. Obsessive and compulsive disorders. Personality disorders. Neurological problems. Neuromuscular problems. Neurobiological disorders. Endocrine problems. Skin problems. And so on, seriously, it's a long long list.
I really want to know. Where are those doctors? I want to be their test subject. I spend so much time with my brain and I barely know it. Nearly thirty-three years, and what the hell happened to me? I mean, besides the extremely premature birth, the collapsed lungs, and the periventricular leukomalacia, of couse. Hand-wave.
The last time I saw my brain was from an MRI ten years ago. Think about what has happened since then. Oh, my. So much sparking in my brain, all those neurons dancing, all those holes being eaten by seizures and pain and mental sicknesses. I want to be committed to Sparkle Motion, but only the right kind. For science.
I want to be a science experiment. I want to donate my body to science dinner, as Dr. Zoidberg would say.
Johns Hopkins and NIH are Metro accessible, after all. Thinking, thinking.
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no subject
Date: 2012-03-23 10:52 pm (UTC)no subject
Date: 2012-03-23 11:34 pm (UTC)Dramatic heavy bosom lifting sigh of defeat.
Naught, I say, naught!
This must be the part where I raise my fists to the sky and scream.
no subject
Date: 2012-03-23 11:17 pm (UTC)This is made of win on so many levels. :D
*hugs*
no subject
Date: 2012-03-23 11:28 pm (UTC)no subject
Date: 2012-03-24 12:57 am (UTC)no subject
Date: 2012-03-24 01:13 am (UTC)I think I've been in all the hospitals for all the Tests and Stuffs (tm). So while I can't speak about what happens to children with CP who grow up - I know they rarely care about studying what's already happened when they can study what's "new" (hence why there is more research with children, I believe). If they'd like to study my 24 issues and get rid of them, cool, but it's all "too late" and "in the past." Hopkins, U of MD, etc - they don't care, I'm sick, I'm not getting better, here are some pills.
Mandi = bad mood. Sorry. But even For Science, science doesn't care. Science wants new or popular. You'd think they'd even find my DID or amnesia something kind of fun to research, but, nope. We are medical outliers. :(
<3
no subject
Date: 2012-03-24 02:34 am (UTC)*nods* Oh, I figured as much. Hugs and snuggles. :p