Wednesday, January 7, 2015

How We Do It: Part LI

photo by Jenni Werndorf

Today was not a good day for Sophie. She had numerous seizures, was both tired and wired, had clammy hands and feet and appeared confused. I imagine it was the full moon coupled with -- well -- whatever. She had an off day, a bad day, one of many in her life. Here's the thing. I was hanging out in her room at some point in the afternoon and felt the tweak of irritation when I saw her have another tiny seizure -- these are tiny jerks and pauses, and they happened all day, on and off, off and on. I felt a tweak of irritation -- not at her, really, but at the situation. The monotony of it. The goddamn constancy of it. A tweak, though. Just a tweak and not the surge, the seizing of the blood in the veins, the fury, the despair. I was mindful of that tweak, what it felt like, and it felt small, like a flame on a short match. Its size -- brief, small -- took me by surprise. I felt, instead, grateful to be at home with this girl, to be subservient to her needs, her instability and vagaries. I felt lit up for a moment, but with light, not heat.

12 comments:

  1. Blessings on you and Sophie, too. May tomorrow be a better day for both of you. x0 N2

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  2. Well that sounds like the kind of reaction to have -- making light rather than heat from a bad situation! I'm sorry she had a bad day.

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  3. Hope the seizures pass quickly. And the tweak, so much less stressful than the fury.

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  4. And throughout it all, you, as an artist, shed light on what it's like. On how you do it.

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  5. I can certainly relate to the response...There's a weariness that often sets into the routine...

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  6. I hope today is better. Thank you for telling us how you do it.

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  7. Thanks for the book recommendation. I am number 205 on the waiting list and the library has ten copies, so it will be quite awhile before I read it. Happy New Year. I hope you and Sophie had a better day today.

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  8. Oh, my heart!
    Sending love to you!!

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  9. Sometimes I can't find the words...

    This is stunning.

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  10. Once again, I'll leave here feeling buoyed by the comfort of your words. (I thought for a long time about how to word this comment, and I think that perhaps 37paddington sums it up much better. Why isn't there a "like" button for blogger comments?!)

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