That Was Me! and other thoughts on post-seizure days

Hilton Head, 2006

Languages are not simply a collection of words. They are living, breathing organisms holding the connections and associations that define a culture. When a language becomes extinct, the culture in which it lived is lost too.

via The Death of Language, BBC Today 

We live in a small house, and in any given moment any one of us knows where the others are, particularly if we call their name. Sophie's room is at the back of the house, catty-corner from the boys' room and down a short hallway from mine. Despite padding her room with a number of pillows and beanbags, cutting off the top half of the door and padding it so that Sophie can walk around safely, stay contained but not boxed in, and placing her bed on the floor to lessen impact, she has still managed to hurt herself. At one point she liked to throw herself into the closet doors which were louvered, made of cheap shutter-like panels. When we padded those, she seemingly sought out the two-inch edge of unpadded wood and banged her head on it. She'll curl up on her bed and scoot to the back wall, find a perfect spot to throw her head onto the wall, exactly where the pillows stop. If I'm reading in my room or cleaning up after dinner, sorting through mail or walking in the front door and hear a banging, I might call out What was that? One of the boys might say, Sophie's banging her head! and then one of them might go into her room and move her from whatever position she's maneuvered herself. Sophieeeeee, we all say in the exact same way, annoyed.

Sophie has also had seizures, thousands of them, and fallen involuntarily, hitting the knobs on her dresser, a shelf, a toy with a hard surface, the two inches of moulding not covered by carpet or padding. Those falls have always been loud. They're thuds, followed by a desolate silence, a silence simultaneous with our intakes of breath, our gasps, our hearts startling, jerking, racing. I might call out What was that? but I'll know instinctively, and we'll race from wherever we are in this bungalow toward the source of the thud. We have found Sophie seizing or just sitting up after dropping in a seizure, her hair matted with blood, her tooth knocked loose, her head wedged in a corner, her kneeling on the floor, a backward crucifix, folded face-down on the bed. When you live years with that happening, sometimes multiple times a day, you get both habituated to it and instinctively primed for it. You get, I imagine, a mild form of post-traumatic stress disorder. I believe my children -- both boys -- have this, and they are also exquisitely mindful when they make loud noises themselves. I'll hear a terrific bang, a thud and immediately after it, one of them will cry That was me! -- so quickly it's more an extension of the sound than a sentence of its own. The unspoken words are It's not Sophie! This, too, happens all the time. It is the language of our family.

Since Sophie began taking Charlotte's Web, she goes for long stretches of weeks without seizures. Even writing that is bizarre to me, and to tell you the truth, we don't really talk about it. Yet. We're not sure if they'll come back. It's very, very strange. We have customs, a careful culture. The other night Oliver whispered to me that he couldn't remember the last time Sophie had a seizure at dinner. Seizures at dinner literally happened every single night. For years.

Last night, I heard a great thud and an immediate THAT WAS ME! shouted by Oliver. Then he shouted that maybe he wouldn't have to say that anymore. I smiled to myself and wondered if our language might be becoming extinct, hoped it was so. Yet.