Thursday, July 16, 2020

Pandemic Darts



Reader, Sophie is full of grace. She's a little lady. She loves to be outside. Really, that's all she wants to do -- to be outside. She loves the trees blowing in the sky. She can't walk as well anymore, but she enjoys sitting on the ground. Her eyes light up when she's outside. There's a lesson there, I know.





I had a conversation with Nice Neurologist the other day about Sophie's resistant seizures. We never really talk about anything else. Sophie's seizure control is okay -- but it really is all relevant. What she endures and what we think is a good day or week or month is a nightmare for others. A friend recently called me for support as she'd found her four year old son under the water, seizing. He'd been taking a bath with his older brother. She called me from the hospital. Her son was okay, but she wasn't. The boy hadn't had a seizure in four years, and she was wrecked. She should be wrecked. There are few things worse in seizure world than the bathtub seizure. Nakedness and thrashing and the water a killer. Yet, he hadn't had a seizure in nearly four years. How have I watched my daughter seize nearly every day (we have had brief periods of total seizure freedom) for twenty five years? More importantly, how has Sophie seized so many times yet loves and lives to be outdoors? While I listened to the panic and horror in my friend's voice, I couldn't help but think no wonder I'm dissociating half the time while Sophie is seizing. I don't really know how I do it. How I've done it. This shit is hard. I was struck by how I know this, yet I still don't entirely rest in it. I still feel agitated or guilty that I'm not doing enough, researching enough, trying to figure it all out. Figure it all out. So, back to the conversation I had with Nice Neurologist the other day. We were in a bar playing darts. He said, What about giving her a pulse of Ativan in anticipation of her bad days? and threw his dart. My turn. I don't understand why that would help? Do other people do that? I threw mine. Well, let me think about it. I'll look into the research, see whether it's been done. He threw another dart. Our darts were all over the bar at this point, a Dilantin hanging off of the seat of a chair, an old-school Diamox wedged into the front of the bar, Ativan dangling from the back of a stool. A guy walked by pulling one out of his neck. Nice Neurologist aims but generally misses. I throw wildly most of the time, but when I really concentrate and listen to what I know, I hit the target. Or maybe it's the opposite. It's only when I throw wildly that I hit the bullseye. No amount of concentration or attachment or expectation improves my aim. There's a lesson there, I know, and it's how I do it.

I don't know why I'm telling you this now. During a pandemic when the whole country is going mad. I guess I'm encouraging you to hang in there. The whole "we can do hard things" mantra. I don't know why, but we can. Lots of people do hard things, literally all the time, for years and years and years. Something is changing, and we have no idea what's happening. I think we need to think wildly and let go of our concentration, our attachments and our expectations. I think we'll aim true that way.


20 comments:

  1. So much in this post. Thank you. Your writing never ceases to amaze me.

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  2. She looks like Frida here. Your darling Sophie Frida. Honey, you don’t just throw darts. You pull your bow string and aim true, let loose, let fly. You slay fire breathing dragons every single day.

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  3. When I most need you to speak for us you do. Maia and Sophie in yards and fields. Lakes and parks. I'm taking her now to the sea. That is the ultimate. Knowing that there could be a seizure even as she dog paddles around and I might have to save her again. But we'll go. Gracefully.

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  4. It must feel like a game of waiting, waiting for the next seizure, waiting to see how severe it is, waiting for it to end. Endless waiting. The pandemic feels like that too. Waiting and waiting, knowing that people die from this, both seizures and COVID. Endless waiting that wears away the surfaces and etches our souls.

    Sending hugs and love. May Sophie be safe.

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  5. Yes, yes. I know that feeling all too well. 24 years of daily seizures excluding the less than a handful of seizure free days we enjoyed when we first started cannabis some 5 years ago. Now, after a week of vomiting added into the mix, "just seizures" feels like a lark. It's all relative. I haven't written to you in quite a while but haven't stopped reading your eloquent and thought-provoking posts.
    Frimet Roth

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  6. I wanted to add that you have been waiting and watching Sophie for twenty-five years and you do with grace and wit and humor. You rock woman.

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  7. I think your final line is on target -- setting aside expectations and attachments. Which is essentially what the Buddhists teach, right? If we expect nothing we won't be disappointed or tormented when it doesn't happen (or when it does). We just deal with it. Not to say I have any idea what it's like to be a parent to Sophie, or to have expectations and attachments on behalf of a child. I've said it before -- she is so fortunate to have you as a mother.

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  8. How lovely and full of grace Sophie is as she enjoys the sun, fresh air,and blue sky.

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  9. Sophia is a teacher. And so are you. You are both full of extraordinary grace. How wise of Sophie to take you outdoors.

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  10. Lovely, as always. And i wish I was in a bar throwing darts. Im just not sure at whom I would be aiming

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  11. I, too, think Sophie looks like Frida in this photo. How lovely that the outdoors brings her such happiness and that it is something you can do for her. I have a new appreciation for being outdoors right now. Even if it's sitting on my porch feeling the breeze and watching the birds and squirrels.

    Your writing about the doc and you is brilliant. Such visuals!

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  12. a beautiful piece, elizabeth. your writing is always on target but this goes deeper; or maybe we’re all so open & raw that we are finally almost able to stay with you. xo

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  13. Sophie looks so delicate and yet so determined in this picture.
    I love what you wrote here, especially that we have to let go of our attachments and expectations.

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  14. Sophie is loved. That makes all the difference in the world.

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  15. I have tears from this. Hard truth.

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  16. I Loved this Post Elizabeth, when we don't know what to do and have done all we can, that has to be Enough. We don't have to Rest in it really, constant Restlessness when numbing Hard Stuff is a constant and without End is sometimes the best we can manage. Sophie just appreciating Simplicity of the Being of Outdoors is a Lesson, perhaps there is an Awareness there that Joy must be had in spite of what the Soul, Spirit, Body is up against every single Day of Life? I dunno, she's probably more intuitive than I as to how best to Cope and just Be in each Moment, a Wise Lesson we all could Learn much from actually. I think it was timely you Shared this one and during Pandemic, everyone now is doing Hard Stuff every Day, whether they want to, like it or not... no Choice but to.

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  17. If we lived near you Mommy and I would love to be outside with Sophie and you. Love to you. I don't understand a Mother's worry because I am not a Mommy but I hope that you find peace somewhere.

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  18. Outside, helping us to survive the madness. Listening to Beethoven's 5th. Beautiful Sophie. I love you both.

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  19. Two beautiful women and a lovely post. I long for the outside too.

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