Tuesday, January 29, 2013

How We Do It: Part XXII in a series



Filipendulous
Adjective: hanging by a thread

That's a leaf that was hanging on my windshield nearly all day, yesterday, as I drove about the city. Blown from the tree that overhangs the driveway and wet from the rain that fell off and on all weekend, the leaf clung to the window for hours, and I didn't want to clear it. Sophie was sick with the flu all last week, and as her fever spiked up and fell down, she had, paradoxically, no seizures. We discussed this last week -- the phenomenon of neurological abnormalities abating during periods of illness and fever, common among the autistic community and rarer in the epilepsy world. Around these parts, though, we were quiet, our breath was held collectively. No seizures. No seizures for a week. No one uttered a word about this -- not The Husband, not The Babysitter, not Henry, not Oliver and other than the passing observation on this blog, neither did I. Because that's how we do it around here. We hold our breath, superstitious, wary of the other shoe dropping, the proverbial jinx. 

On Sunday I went to a daylong class about the Four Noble Truths of Buddhism, taught by the great Sharon Salzburg. The first Noble Truth is the truth of dukkha, which roughly translates into anxiety, suffering, and dissatisfaction. Dukkha attests to the human tendency toward dissatisfaction with circumstances and an expectation for something different. The second Noble Truth is the origin of dukkha, or the cause of suffering, and this is craving, attachment, aversion. I thought about the first and second Noble Truths as I drove around yesterday, the yellow leaf filipendulous on my windshield. I thought about them, again, later in the afternoon, when Sophie had a huge seizure for the first time that week, right before dinner and then again, when she had another one during dinner. Oliver stood in the doorway, his face grim and asked is she all right? when it happened, again, twenty minutes later. As Sophie jerked, her face contorted into a grimace, the phlegm of the past week's flu and congestion rattling in her throat, I felt fear come flooding back, the other shoe, dropped, the jinx a prophecy. I had a minutes-long internal debate on whether or not to administer Diastat. I wondered, frantically, if she had something else, a secondary infection. She had no fever, though. I panicked, briefly, about her dying. I acknowledged that, as I have so often done and watched the thought slip away. 

A week free of seizures and then a flurry of them, and I thought, at first, that it might be some cruel joke, the brain rushing to catch up, a perverse reversion to normal. 

When the adrenaline calmed, I sat for a long time at Sophie's side and watched her breathing, her eyes open but vague, and I felt resigned to all of it, or perhaps not resigned but, rather, cool. 

The third Noble Truth is the truth of the cessation of dukkha, the removal, absence or non-arising of suffering, and the fourth outlines the path to the cessation of dukkha. Earlier in the day, as I'd driven around the city, the leaf clinging to the windshield, I had thought about the four Noble Truths, how the experience of giving birth to Sophie, to receiving her diagnosis, to looking for help for her, to fighting for her and to watching her seize, over and over and over again while simultaneously living was a near perfect parallel to the path of the four Noble Truths and that I was infused with them quite beyond my own consciousness. 

Sophie had another big seizure this morning during breakfast, and when we brought her to her room, both Henry and Oliver, dressed as SuperHorse and SuperChicken, stood in the doorway, anxious. Is she all right? they asked, and I assured them she was. They left for school, and an hour later, so did Sophie. When I went outside to my car, the leaf, of course, was gone.

23 comments:

  1. This was so good to read. You are wonderful.

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  2. Your writing is so full of grace. xoxo

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  3. this is just lovely, infused with a kind of patient acceptance, at least in this moment. it's haunting.

    superhorse and superchicken? did i miss something?

    life is stranger, more beautiful and more aching than any fiction.

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    1. Angella, you didn't miss anything, but I'll clarify the superhorse and superchicken later today!

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  4. I felt this, every word of it. Is it wrong to wish for fevers? Maybe just a little fever?

    Does she have seizures when she's really hot? Like on a really hot summer day? Or just when her internal temp is so high?

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    1. Deana, Sophie doesn't have seizures when her internal temperature gets high -- not even when she has a REALLY high fever (more than 102!). Hot weather doesn't affect her any more than cold weather -- although she doesn't do well in high humidity. She has seizures ALL THE TIME, except for during fever. Weird, right?

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    2. Max will have seizures when it's really hot outside, or if the weather is drastically changing. But, we don't always see seizures when he's sick. It's pretty common for his fevers to spike at 104. And he always seizes after surgery, which is always fun to explain to the anesthesiologists. Brains are so weird. ;)

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  5. Sometimes I read your posts, and I try to think of something to say, and nothing seems adequate. This was one of those times. It was just so beautifully observed and conscious. I wonder if the seizures stop during a fever because of the antibodies her body is producing to fight off the fever? Or because having a fever slows or stills some other thing the body produces, and the lack there makes the seizures stop. Of course you have already thought of this. I wonder if there is research being done. Anyway, thank you for this post of your noble truths.

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  6. You are steeped in innate wisdom. You are the one who should be teaching about Noble Truths. You have not come by this wisdom easily, though.
    I love you.

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  7. I am so sorry for what Sophie and your whole family endures. I wish I could help. I think you are beautiful.

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  8. There is congruity in the world. There is beauty in the way things fit together, ebb and flow, and there is absolute beauty in the way you write of them.

    Love.

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  9. This post made me very sad for you, and Sophie and your boys and your husband. It is also very beautiful and accepting of what is. The fever thing hangs out in my head as I rendomly think of things that might produce fever w/out causing damage... call me crazy!

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  10. I CAN'T BELIEVE THAT YOU GOT TO SEE SHARON SALZBERG!! She is one of my favorite authors on Buddhism--have you read "Lovingkindness?" My favorite disability-related Buddha quote is from when the Buddha was really sick (with diarrhea or something) at the end of his life. When one of his followers approached him and poured out his condolences, the Buddha responded, "Sunlight Buddha, moonlight Buddha." He was still the same, pure man with or without sickness. That saying became a bit of a mantra for me when I was having seizures continually. Seizures make you feel like you have completely lost control and they make you feel like you have lost something. But you are the same, taking on a different consciousness. "Sunlight Buddha, moonlight Buddha." That is all. Thanks for the beautiful post.
    ~Julianna

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    1. Thank you for your kind comments, Julianna -- and for sharing some of your own experiences. I love Sharon Salzberg and have read much of what she's written. Seeing her in person and listening to her for a full day was such a privilege -- she is like a great Buddha, actually, herself, a voice that is calm, amused and strong all at once. I hope that you, too, can hear her in person one day!

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  11. A week reprieve - that almost seems long enough to start wondering 'what if?' You're right, it does seem cruel.

    In the middle of some rough years at home when I was a kid there was a branch that would brush my neck on my way home from school every day. I have the most vivid memory of this - it was a touch of peace before arriving home. Your leaf reminded me of this. Strength.

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  12. Ah yes, Dukkha. I have been flirting with some serious Dukkha over on this side of the pond. I love this post, and the way you wove abstract Buddhist concepts and the symbol of the leaf into your narrative of the day-to-day.

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  13. So achingly beautiful Elizabeth, how you encapsulate the grim in such beauty is remarkable. I admire the strength, endurance, and joy of ALL of you so very much. I hope you have a better few days in front of you. x

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  14. this is so profoundly beautiful that by the time i was reading the closing lines i was crying. ... aching for you, for sophie, and (selfishly) for me... for all that i understood about this post. wishing for a better week for sophie. xoxo from across the miles.

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  15. Filipendulous...great word.
    This is a truly beautiful weaving Elizabeth. So many folks in this world "practice" religion or spirituality but neglect to intertwine it into their lives. Questioning, seeking and personalizing our religion to fit our unique experiences is so important in the journey to find synchronicity with spirit. Having a child diagnosed with special needs seems to fast-track this process, (for me anyway) Your beautiful piece really resonates with me in my own personal effort to find peace too. Thank you.

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  16. i wonder if it's the symbolism you find in your life and the on going search for deeper meanings that allows you to do it how you do it. hugs to you all, i hope sophie's seizures (seizure= from the Greek seismos, earthquake) are better now.

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    1. Thank you, Francesca -- I imagine your own crafting, sewing, making art of your beautiful, natural surroundings is how you find meaning as well -- not just in the simplicity but also in the great suffering that you and your family have endured. xoxxo

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  17. the how you do it posts get me every time

    that leaf - explaining it all so silently

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  18. Thank you for this. Love to you and yours.

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