Since Calvin was first diagnosed with epilepsy six and a half years ago I’ve made the acquaintance of a lot of incredible people, so many so that I have real trouble remembering names and the names of their kids and sometimes even faces. Some I've met in person while others appear only as faces on the Internet. One of them, Elizabeth, I can safely call a soul sister just as she has referred to me as her kindred spirit.
Elizabeth’s teenage daughter, Sophie, has had seizures since she was three months old, perhaps longer. Elizabeth has written a book about it and maintains a daily blog about Sophie, her two boys, and the wrath of seizures, but often expands into thought provoking posts about politics, the welfare of others, of the gross inequity of things in this country, of the need for compassion and progressive thought rather than selfishness, fear mongering, hate and reactionism.
I have been following her blog for a short time and this morning I came across this entry, which—not unlike most of her other posts—moved me, but this one in particular like an out of body experience, as if I were looking in on my own life:
Sophie's hands were clammy all day and I'd say that clammy hands and feet, along with drooling, come in second behind seizures as most disturbing elements of a life. One means the other and the other means one, and we'll never know for sure what comes first or how to make it stop. We were sitting at the kitchen table eating dinner, Sophie tilting to the left as if her bones had come undone, clammy hands and feet and un-knit bones, an unseen seizure, did it come first or after but never mind, we're not used to it and rather annoyed by it, the boys and I, sometimes. No less Sophie, who is floating, I'm certain, clammy, her mouth a bird's barely open, hungry, plaintive in a speechless way. I spooned food into her mouth and listened to her brothers, their talk as concrete as Sophie's un-knit bones and vowels and clammy hands slipping. I moved my eyes to theirs and in the moment it took to look, Sophie's own eyes rotated to the right and upward but in that same moment, the moment that I looked at the boys, I saw her eyes, too, and I said, loudly, STOP SOPHIE, NO, SOPHIE, STOP SOPHIE, NO SOPHIE, as my eyes rotated from the boys to hers and hers rotated away from the right, back and stared right into mine. Eyes were all rotating, and the pause that made room for my shout ended, and they were talking again and I said, Did you see that, guys? I stopped it. I got it just in time, did you see that? Good job, Sophie, I said, we didn't need that one. Oliver put his food down and rotated his eyes upward and around and said, That was A-MAAAAZING, MOM. You're a miracle maker, and then I giggled and rolled my eyes.
Thank you, soul sister.
For more vivid, beautiful, raw and sometimes humorous writings, see Elizabeth’s blog: a moon, worn as if it were a shell.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
Elizabeth’s teenage daughter, Sophie, has had seizures since she was three months old, perhaps longer. Elizabeth has written a book about it and maintains a daily blog about Sophie, her two boys, and the wrath of seizures, but often expands into thought provoking posts about politics, the welfare of others, of the gross inequity of things in this country, of the need for compassion and progressive thought rather than selfishness, fear mongering, hate and reactionism.
I have been following her blog for a short time and this morning I came across this entry, which—not unlike most of her other posts—moved me, but this one in particular like an out of body experience, as if I were looking in on my own life:
Sophie's hands were clammy all day and I'd say that clammy hands and feet, along with drooling, come in second behind seizures as most disturbing elements of a life. One means the other and the other means one, and we'll never know for sure what comes first or how to make it stop. We were sitting at the kitchen table eating dinner, Sophie tilting to the left as if her bones had come undone, clammy hands and feet and un-knit bones, an unseen seizure, did it come first or after but never mind, we're not used to it and rather annoyed by it, the boys and I, sometimes. No less Sophie, who is floating, I'm certain, clammy, her mouth a bird's barely open, hungry, plaintive in a speechless way. I spooned food into her mouth and listened to her brothers, their talk as concrete as Sophie's un-knit bones and vowels and clammy hands slipping. I moved my eyes to theirs and in the moment it took to look, Sophie's own eyes rotated to the right and upward but in that same moment, the moment that I looked at the boys, I saw her eyes, too, and I said, loudly, STOP SOPHIE, NO, SOPHIE, STOP SOPHIE, NO SOPHIE, as my eyes rotated from the boys to hers and hers rotated away from the right, back and stared right into mine. Eyes were all rotating, and the pause that made room for my shout ended, and they were talking again and I said, Did you see that, guys? I stopped it. I got it just in time, did you see that? Good job, Sophie, I said, we didn't need that one. Oliver put his food down and rotated his eyes upward and around and said, That was A-MAAAAZING, MOM. You're a miracle maker, and then I giggled and rolled my eyes.
Thank you, soul sister.
For more vivid, beautiful, raw and sometimes humorous writings, see Elizabeth’s blog: a moon, worn as if it were a shell.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
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| Sophie as an infant |
Thank you for the honor, Christy. And the photo of Sophie that you included is one of the last taken of her before she was diagnosed, so it holds much meaning for me. I am certain that YOUR blog and the way you convey your own hellish journey will further people's awareness of epilepsy and its myriad effects, not just on those who have it, but also their families. I am grateful to have met you here and only wish that we had never met because we would be living quite different lives!
ReplyDeleteperhaps we would have met in different circumstances. i'd like to think of it that way. xo
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