This morning I watched a trailer for The Sacred Disease, a documentary film being made about epilepsy. In it a mother describes how her teen aged daughter, who has been having seizures for fifteen years, has suffered over 27,000 of them—she counts them and logs them, like I do. Hearing appalling news like that is pretty unimaginable, unless you live it. Then, to see clips of her child, as a toddler, having tonic-clonic seizures, like Calvin, one has to wonder how they live through it—their little bodies and brains ravaged by electric tsunamis every month, every two weeks, every day, sometimes every hour—every minute.
But they don’t live through it unscathed. Their brains get fried by the seizures and drowned by the drugs. They fall deeper and deeper into mental and physical retardation. If they’re lucky, the don’t regress and their seizures don’t burn out of control and set them into a vicious downward spiral until they lose everything they ever learned, even how to breath. But it can happen, and it does, because there isn’t a cure for this relentless disorder. It grabs hold and doesn’t let go, like a pit bull in a ring. It wants to take over. Somehow the serpent finds a way to rear its ugly head even through the thickest medicated fog.
I want to beat the hell out of this loathsome beast, pound it into submission with white-knuckled fists, but all I can do is bash a pillow. I want to rip it out of existence with my teeth, pulverize it into tiny pieces that float away and dissolve, banish it from the earth, smother it with the weight of a hundred bodies. But epilepsy is insidious. It can’t be arrested that easily. We don’t have the proper tools to extract the vile canker, at least not Calvin’s kind. And so it roots itself, using our childs’ brains as its host, and sends its poisonous, pulsing tendrils deep into the delicate tissue of our beloved. It’s no wonder epilepsy used to be seen as demonic possession. It seems the devil incarnate to me.
Today is international epilepsy awareness day. In honor of the millions who suffer from the disorder, please make a kind gesture by sharing Calvin's story with another, either by posting it on your Facebook page, emailing it or by word of mouth. Help bring us one step closer to a cure. It's not hard. Just do it one story at a time.
But they don’t live through it unscathed. Their brains get fried by the seizures and drowned by the drugs. They fall deeper and deeper into mental and physical retardation. If they’re lucky, the don’t regress and their seizures don’t burn out of control and set them into a vicious downward spiral until they lose everything they ever learned, even how to breath. But it can happen, and it does, because there isn’t a cure for this relentless disorder. It grabs hold and doesn’t let go, like a pit bull in a ring. It wants to take over. Somehow the serpent finds a way to rear its ugly head even through the thickest medicated fog.
I want to beat the hell out of this loathsome beast, pound it into submission with white-knuckled fists, but all I can do is bash a pillow. I want to rip it out of existence with my teeth, pulverize it into tiny pieces that float away and dissolve, banish it from the earth, smother it with the weight of a hundred bodies. But epilepsy is insidious. It can’t be arrested that easily. We don’t have the proper tools to extract the vile canker, at least not Calvin’s kind. And so it roots itself, using our childs’ brains as its host, and sends its poisonous, pulsing tendrils deep into the delicate tissue of our beloved. It’s no wonder epilepsy used to be seen as demonic possession. It seems the devil incarnate to me.
Today is international epilepsy awareness day. In honor of the millions who suffer from the disorder, please make a kind gesture by sharing Calvin's story with another, either by posting it on your Facebook page, emailing it or by word of mouth. Help bring us one step closer to a cure. It's not hard. Just do it one story at a time.
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| Prone to Epilepsy by Marilyn Manson |
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