Friday, March 14, 2014

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.

23 comments:

  1. "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."

    We do this. I've never realized it until I read your words. I hope your language changes too.

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  2. I imagine there will always be doubts about whether these changes are permanent. As you said, falls and thuds have been part of your culture and language for so long. I've always thought of the demise of a language as a sad thing, something to be avoided. This is a good example of desirable linguistic evolution!

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  3. I do hope your language will become extinct.

    Best,
    Bonnie

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  4. Please may it be so!!! Rejoicing for you all.

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  5. Remarkable. I am in awe of this Charlotte's Web treatment, therapy, whatever you want to call it… I am so grateful that it does what it does for Sophie, that it works, that it allows you the luxury of hope, that it is quite literally changing, not just your language, but your lives.

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  6. I am so happy that the weed is working. For Katie not as much.

    Katie hasn't lived with me for four years and yet when I hear something from the lady in the apartment above me I still think it's Katie in her bedroom. Old habits.

    Before I hit publish I realized happy doesn't really explain how I feel about Sophie, a young women whom I have never met. I am thankful, relieved, joyful, elated. It feels like a long night has passed for you and Sophie and that dawn has come, a new day for your family.

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  7. In my house, even though no one had seizures, when one of the kids made a loud noise they would immediately yell, "I'm okay!" I just realized after reading this post that I must have been extremely worried about falls...or something.
    Do you all feel as if you are holding your collective breath? One day, I hope, you will all relax into this new reality.
    And speaking of language- your gift in using it is remarkable.

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  8. This is such beautiful writing, Elizabeth. There is so much in these lines, and between them. I was completely undone by Oliver whispering to you that he couldn't remember the last time Sophie had a seizure at dinner, whispering it, as if to say it too loudly might alert the fates.

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  9. It really wish and hope this for you all. More then anything.
    And for some reason, I think because I have been to your home, your words had such clarity with me, that it made me wish and hope for it all the more.

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  10. We are a family of 6 and I understand your language, we are from the same culture. I find a place reading your blog everyday.

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  11. You have written so clearly and with such detailed feeling about this that I caught myself feeling that I understand - seeing your house and hearing the conversations in my mind's eye. You have drawn clearly, in a few words, what living with that stress - and then, living without it as a daily force - feels like. I know that none of us walks in your shoes, but your gorgeous way with words has communicated something intangible so well. Thank you for inviting us in, and sharing this sweet relief. I pray that it continues for all of you.

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  12. This is so cleanly and passionately written that I felt a weird almost religious tremor go through me that kind of joy I get that remarkable joy that sometimes just rushes in.

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  13. Once again, your post has left me breathless... and with this odd mixture of sadness and joy. Always love your writing!

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  14. very sad and happy - reading this - at the same time ... i hope you can smile more and more.

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  15. Elizabeth-

    You've been on the front lines and in the trenches for so long. I am in awe of your strength, resilience, and courage, and I salute your no-bullshit attitude. You really inspire me, and you break my heart.

    I'm glad the medicine is working for your girl, and I'm glad it's bringing in a little light and space for you and the rest of the family.

    What a fucking world.


    love-

    Scott

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  16. I too, much like Sophie seem to find the un- safe spot and manage to hit my head there. My Mom had to lift my 88 pounds of dead weight to get my head un-wedged from between an old sewing machine on one of those cabinet things and my bed. Yes there was a big foam pillow duct taped between the crack and a normal pillow on top of that yet my head found a way to get in there. Also I had a place on my head that was always sore , I wondered why.....it is because I would get on my bed, sit at the only hard place and have my event things ( and I took my helmet off!)...why did I do that??? I did not realize that was what I was doing!! Yes my parents come running when there's a bang too...lately I am glad to say "IT'S NOT ME!!!!!"..... I am so glad it has not been Sophie either.
    Peace to you and you family.

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  17. I am in awe of how you write. I am in awe of what is happening with the CBD.

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  18. In the same way that Charlotte's Web is healing for Sophie, I believe your words are healing for your family. To have someone that can articulate their reality so beautifully is a gift immeasurable. I hope you know that.

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  19. It's a magical thing and difficult to pin it down in words. But you've done it. Every time I read your blog, I understand a little bit more. I don't think anyone could challenge your PTSD diagnosis. There is alchemy in this piece.

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  20. I don't think it's a "mild form" of PTSD at all. I thinkPTSD is exactly what it is. In the years (nearly four) that Bubba was so incredibly sick over and over again with intermittent periods of full, robust health and the doctors couldn't find a damn thing wrong with him (except for the mysterious illness that landed him in the hospital with NG tubes and IV fluids every 12-15 weeks), I was absolutely on-guard. Hypervigilant doesn't even begin to cover it. For years after the bouts stopped I walked around holding my breath, waiting for the other shoe to drop, hovering a few inches above the ground and never able to really settle in to my skin comfortably lest he need me to come flying to his side. I was unable to leave my cell phone on the counter in case I needed to call 911. Every time he got even slightly under the weather, my stomach clenched and I know I made him insane watching his every move to make sure that this wasn't the beginning of another round instead of just a cold or stomach ache. I am pleased to say that after nearly six years of good health without one hospital visit, I am mostly relaxed and trusting that we are done. Mostly. May you find yourself there as well one day, all of you. Love.

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  21. This is so very very poignant. And in a deep yet different way, I completely relate to it. The small house, all of us living closely together with the ramifications of this long long illness of mine and all its own PTSD sorts of reactions. I can remember my daughter, always calling out after some childhood accident or fall, " I'm all right!" Even if she was bruised or bleeding. Like she had to be okay because everything else was so very not okay. I'm glad that things are even a little better at your place. That there is some respite. And I am hoping that you will have more and more of it.

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  22. Full-blown PTSD, for sure. I have it, too, although from different things. I aware of it all the time.

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