Watching time-lapse video of someone’s face reminds me of a seizure, the bizarre image of rapidly fluttering eyelids and twitching lips. What’s missing is the pallid complexion, blueish lips, rolled back eyes, salivating mouth and, of course, the sick and miserable knowledge that it IS a seizure—your child’s seizure—his first seizure, his hundredth seizure, his thousandth seizure or worse.
An hour ago, after a god-awful morning of shattering screams, suddenly, while in his johnny-jump-up, Calvin went silent, his body limp. I jumped off of the couch and lifted his face to mine. I pointed out his flushed cheeks to my girlfriend Uli who was curled up in the corner chair. I pried his thumb from his mouth to see, by his face, he was having a seizure. As I unbuckled him and hoisted his dead weight from the jumper his body stiffened into a three-and-half foot, forty-pound human plank, the jumper straps clamped between his legs. Uli helped me, we got him to the couch, his back wedged up to its back. Her presence made my tears fall more readily as Calvin shivered and shook, blinked and twitched, his lips and fingers turning blue for want of oxygen.
It’s a wretched dilemma watching Calvin have seizure after seizure after seizure in the face of increasing the drugs meant to stop them—the mysterious white chemical powders molded into rounded happy shapes, some coated in pleasant salmon-pink, scored neatly in their centers. Innocuous? Hardly. Seizures or no seizures, would he be walking independently if not for the drugs? Perhaps he’d be talking. Perhaps he wouldn’t be screaming. Maybe he'd be sleeping through the night. What about the state of his kidneys and liver? No one knows for certain. We just know that for five years we've been living epilepsy's pitch black reality and we don’t see a light at the end of the tunnel.
He's screaming again. I think we got another one coming.
Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard, just do it one story at a time.
An hour ago, after a god-awful morning of shattering screams, suddenly, while in his johnny-jump-up, Calvin went silent, his body limp. I jumped off of the couch and lifted his face to mine. I pointed out his flushed cheeks to my girlfriend Uli who was curled up in the corner chair. I pried his thumb from his mouth to see, by his face, he was having a seizure. As I unbuckled him and hoisted his dead weight from the jumper his body stiffened into a three-and-half foot, forty-pound human plank, the jumper straps clamped between his legs. Uli helped me, we got him to the couch, his back wedged up to its back. Her presence made my tears fall more readily as Calvin shivered and shook, blinked and twitched, his lips and fingers turning blue for want of oxygen.
It’s a wretched dilemma watching Calvin have seizure after seizure after seizure in the face of increasing the drugs meant to stop them—the mysterious white chemical powders molded into rounded happy shapes, some coated in pleasant salmon-pink, scored neatly in their centers. Innocuous? Hardly. Seizures or no seizures, would he be walking independently if not for the drugs? Perhaps he’d be talking. Perhaps he wouldn’t be screaming. Maybe he'd be sleeping through the night. What about the state of his kidneys and liver? No one knows for certain. We just know that for five years we've been living epilepsy's pitch black reality and we don’t see a light at the end of the tunnel.
He's screaming again. I think we got another one coming.
Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard, just do it one story at a time.
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| photo by Michael Kolster |
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