Epilepsy and sleep are bedfellows. A high percentage of seizures occur either during sleep or in the transition from wakefulness to sleep or visa verse. Calvin used to have a lot of what I called “naptime onset” seizures, occurring within the first fifteen minutes of falling asleep for his afternoon nap.
I track Calvin’s seizures in a journal and highlight them on the calendar in orange marker so that I have a written record and a visual sense of their patterns necessary to evaluate the efficacy of his treatment. I can remember when Calvin first started having these subtle naptime seizures years ago. They went away for a while. Now they're back.
Watching Calvin nap, particularly when I suspect an imminent seizure, is not the most pleasant thing in the world for me. I sit at the edge of the chair and breathe shallowly, like a marksman taking aim, my chest taut, watching for the telltale fluttering of my son's eyes. I hear his breathing and the seconds ticking by—nothing else. Every twitch of his fingers shaves a minute, a day or perhaps a week off of my life, sprouts another gray hair. When twenty minutes go by he’s pretty much out of the woods and will usually sleep peacefully for the remainder of an hour without so much as moving or having a seizure.
Then and only then can I breathe deeply and retire to my own bed to try and get some rest. Fatigued, my body feels as though I’ve just watched a suspenseful movie, the kind that lays one to waste from the extended tension of muscles and stress to the psyche. But this ain't no movie with popcorn and junior mints and whose to say if there will be a happy ending?
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.
I track Calvin’s seizures in a journal and highlight them on the calendar in orange marker so that I have a written record and a visual sense of their patterns necessary to evaluate the efficacy of his treatment. I can remember when Calvin first started having these subtle naptime seizures years ago. They went away for a while. Now they're back.
Watching Calvin nap, particularly when I suspect an imminent seizure, is not the most pleasant thing in the world for me. I sit at the edge of the chair and breathe shallowly, like a marksman taking aim, my chest taut, watching for the telltale fluttering of my son's eyes. I hear his breathing and the seconds ticking by—nothing else. Every twitch of his fingers shaves a minute, a day or perhaps a week off of my life, sprouts another gray hair. When twenty minutes go by he’s pretty much out of the woods and will usually sleep peacefully for the remainder of an hour without so much as moving or having a seizure.
Then and only then can I breathe deeply and retire to my own bed to try and get some rest. Fatigued, my body feels as though I’ve just watched a suspenseful movie, the kind that lays one to waste from the extended tension of muscles and stress to the psyche. But this ain't no movie with popcorn and junior mints and whose to say if there will be a happy ending?
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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