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| New York City, 1997 |
to Christy, in Maine
When Sophie was a baby, I actually used to count her seizures. I had a plain, spiral notebook -- a small one -- where I'd mark the seizures, tally them. I'd look for patterns, an ebb and flow. Moons waxed and waned, as did the tides, Sophie's bones grew, her baby teeth fell out and her adult teeth grew in. The weather was muggy, it snowed and the Santa Anas blew. She got sick and got well. She met developmental milestones and reached plateaus. She went into crowds agitated and sat alone ignored. She ate strawberries and avoided dairy. She was doped up on drugs and she was weaned. Moons waxed and waned, as did the tides. The earth rotated round the sun, placid, most years, there were sun flares and it was jolted off its axis in March, 2011.
I continued to tally the seizures one two three four and a slash for the fifth. I had notebooks and notebooks of these, a twisted version of the college blue book. I was earnest and hopeful.
I ranted twice yesterday on the blog, came home from a baseball game and heard from the babysitter that Sophie had a lot of seizures, many of them. It seems, sometimes, that Sophie always has a lot of seizures, so many seizures that there's no point in making marks, in filling notebooks, in noting them at all. I stopped filling notebooks years ago. They stand proudly in some cabinet, a record of diligence. I was earnest and hopeful.
I had the thought that I should, rather, track my anger and look for patterns. Many seizures: much anger. Anger displaced. I don't give a damn about Obamacare. I don't give a damn about arguing with conservatives about their stupid notions of guns and liberty. I don't give a damn about conservatives. I don't give a damn that the disabled don't have basic civil rights. I don't give a damn about baseball or gray skies or red roses. Five ten fifteen twenty scratches on a clean white page. I don't give a damn.
I would rather drink bourbon with my friend in Maine, perhaps kiss her on the lips and taste it.
Last night, I sat on Sophie's bed and lay my hand on her head. I closed my eyes and breathed in one two three and out the same. I asked for mercy. Tell me what to do next, I asked, before I got up. Take my anger. Make your own tally.
Goddammit. There's no question I'd be bourboning it up every day.
ReplyDeleteMuch mercy to you, Sophie, your friend in Maine, her Calvin, and everyone else. Mercy galore.
Holy shit, Elizabeth. This. This. This. I could fill a notebook or twenty with hashmarks for the times your words have brought me to tears. Beauty you beauty.
ReplyDeleteAnd thus, you bring me to my knees again.
ReplyDeleteno words. just anger, and yes, in some corner of it all, gratitude -- for your wisdom, your beauty, your fierce love, and surely your words.
ReplyDeleteMaybe anger is price we pay for giving a damn.
ReplyDeleteThe virtue and the vice all tangled up together.
I don't think I am saying this right but your anger is one of (just one of) the most beautiful things about you -- how it is so considered, mostly contained, but when you unleash it, so poetic and just so right. There is no hint of chaos or violence in your words, just a bone deep sense of what is right and what is so very wrong.
ReplyDeleteOne of the things I find so epically unfair is how those who do give a damn can feel so powerless. Or maybe that's why you do care, because you take the time to think and feel deeply instead of knowing you could just sign your name on a piece of legislation or call up twelve lobbyists to line your pockets and, "whoosh!" make change. Maybe your reflection, your search for understanding and desire for some sense of it all is a necessary part of caring enough to want change to actually happen.
ReplyDeleteIn any case, I agree with everyone else that your words are so beautifully wrought and I sat here with tears in my eyes and my throat for several minutes before I could even compose a comment.
Elizabeth, this is beautiful. And raw.
ReplyDeleteI wish I had the words. I don't. I am just glad you keep writing it down, keep telling us how it is, and one day these posts will be a book. They have to be. My love to you, dear Elizabeth. Always.
ReplyDeleteI always wish I had the right words. I never seem to. Just know I love you.
ReplyDeleteYou are so beautiful in this picture by the way.
Knowing you and your writing has made its mark on me.
ReplyDeleteRight now, at my house, I have prunes soaking in bourbon (comme les francais faisent en Armagnac.) If you were here, I'd feed you one.
This writing...you...extraordinary. I wish I could be more eloquent with my praise...I am awed.
ReplyDeleteKris M.
to walk a mile in your shoes - I would have given up a long time ago - your hatch marks do count are counted and truly mean something more than a mark on a page
ReplyDeleteI really hear you.
ReplyDeleteThis was beautiful...and every part of your years is in it.
ReplyDeletethank you
I am both stunned speechless by your words, and oddly comforted, to not feel so alone.
ReplyDeleteLove to you.
Son of a bitch.
ReplyDeleteI hope - really hope - you know what I mean when I say that. You just said so much with your words. I am speechless.
Just sitting here, staring. Thinking of you, Sophie, and what I wouldn't give for things to be different. Sending love.
ReplyDeleteNot long after my mum died some dick head cut me off and I almost hit him, on purpose. He stopped his car to glare at me, give me a piece of his mind, whatever. I wanted to yell at him fuck you, my mum is dead! But I didn't I flipped him off.
ReplyDeleteI get angry too, obviously. Sometimes things hurt so much you just get angry.
I want to say that your writing is something awesome (in the old sense) and holy, and that I see the truth in this, you have written the truth, and I want to hold a space for this and you. A psychic space to say, we witness and we hear you. And for Sophie, too--we see you Sophie. I guess what I'm saying is sometimes your writing breaks down that Buddhist boundary, the false idea of separation and I can feel all of this. And I hope you can feel all of us.
ReplyDeleteElizabeth -- I think Lisa is right. Your anger, and the way you carefully, thoughtfully direct it, is one of your most appealing features. And your writing, holy shit! I'm sitting around writing about the books I read and walking my dog and cleaning my house. You put me to shame!
ReplyDeleteby the way elizabeth, you are very beautiful. i love that photo. i meant to tell you that but your writing just laid me flat and blew everything else out of my mind.
ReplyDeletedo you have a literary agent? i think you should have one.
I think this is the most exquisite thing you have ever written. I am pierced. Pierced straight through my soul. I actually made an audible gasp at the end... I am alone in my house and I gasped - guttural and primal, as I read the last lines, and then the tears came. I KNOW this is the most exquisite thing you've ever written.
ReplyDeleteI too recall charting my daughter's seizures in a notebook like your own. Later, I transferred them onto the computer. I'd print them out, feeling all professional, making sense of it all. I would make a hand sketched graph on paper, frequency along the Y axis, months along the X axis, plotting the seizures in red marker and connecting the dots, a jagged line against the white page. And it never made sense. I kept trying to make sense of it and it never made sense.
I too stopped charting them after a time. I stopped counting. "Several" I say to the neurologist. I stopped counting.
I mean this - I LOVE YOU!!! Sincerely, I do.
And I concur with Angella above - you need a literary agent. You need to write a book. The world needs to hear your voice.
xoxo
Hi Elizabeth: A friend directed me to your blog and I have been lurking for a week or two. My daughter has seizures as well, but these days only about two a month. She also has Asperger's, learning disabilities, and chronic migraines. So I don't know your particular piece of exhaustion, sadness, frustration and reslilience, but I do know some of its shadows. Thank you for chronicling this journey and for sharing. Most people don't know what it is like to not be able to protect and make safe the one thing that you, as a parent, are supposed to protect and make safe. The closest they can get is to read something like this.
ReplyDeleteThank you so much for visiting and for your kind words, Margaret. I hope you'll come back, and I look forward to exploring your own writing --
DeleteOoo, i totally agree with the commenters saying you need an agent! Isn't that a good idea? Yes yes yes!
ReplyDeleteAnd I also wanted to say I'm totally with you on the breathing--counting three in, counting three out. I hold it for three before I let it out, then hold it for three before I take another one.
Good grief, I wrote the word "totally" twice in my comment. I'm not sure what to make of that.
ReplyDeletexoxoxo
ReplyDeleteThat photo. Your words. What you've endured together. How you weave it into something beautiful, painful as it is. You amaze.
ReplyDelete