Sunday, March 18, 2018

Parables of Neurology, The Cosmos



Star Trails
Photographer: Carl Jackson



At some point in the waning years of the last century, Sophie was on her eighth or ninth drug, a drug that wasn't yet FDA-approved but that The Neurologist At The Time thought worth trying. I received the drug from a pharmacy in London, a tiny little shop on a cobblestoned street with a 17th century sign hanging outside that swung in the English rain. You figure out which part of that sentence is fiction. I've told this story before. The drug was a white powder and came in a foil packet called a sachet, and after I carefully poured the contents out, I cut them with a razor blade to get just the right amount for the baby, about enough to fit into a 1/4 teaspoon. I dipped my finger into the powder and put it on my tongue. Powerful enough to stop seizures but bitter enough to spit out. I gave it to the baby.

Know that the word irritable is frequently used in neurology literature as a possible side effect. An Earlier Neurologist listened to my complaints about the Baby's constant fretting and said, You have to figure out what your tolerance is as far as irritability, after which I lit the fuse that connected the telephones of the last century that we were using and blew him up. That should be parenthetical.

On the third day and then night of the drug in the sachet, Sophie began screaming all night long, flailing her arms and arching her back. She screamed until she became hoarse. You can't imagine what a hoarse infant sounds like -- just air but more -- air that you can hear, and I spoke into the air as I walked with her, up and down, up and down. Enough. This is enough. No more. We will not do this. The next morning I called The Neurologist At The Time. The Neurologist At The Time was what they called cutting edge, no pun intended, knives and docs, docs and knives, and I liked him. I was going to say love but that would be fiction. I called him up and said, The Baby is beyond irritable. She is psychotic, if babies can be psychotic. She is still seizing. She is now on two non-FDA-approved drugs and is being weaned from Phenobarbital. How many babies do you know on this combination? Could the three drugs be interacting? 












(silence)













The Neurologist At The Time said, That's a very interesting idea, and the words travelled as sound through a wire connecting us, across the country (I was visiting my parents in Atlanta and The Neurologist At The Time lived in New York City) and assembled themselves into block letters that floated out of the can I held up to my ear and spun round my head.


T h a t ' s    a   v e r y   i n t e r e s t i n g   i d e a.












(silence)









I have a Bachelor's degree in English and French literature. I've also read an indeterminate number of novels, including all the classics in French. I've studied Mandarin Chinese, excelled in modernist poetry and wrote an honors thesis on Pascal's Pensees. The only science class I took in college was Zoology, and during my senior year I thought I might round out the piles of novels and poetry that lay everywhere in my room by taking Waste Management. I got a D in Calculus.  Yet, evidently, as per The Neurologist At The Time, The Cutting-Edge Neurologist, I was having interesting ideas about my nine-month old daughter's brain and its response to seizure drugs from other continents.

I never got over this, by the way.

The landscape changed in a moment, over the telephone. The tiny little mother mind™was born in that moment, and I'd describe the birth as a kind of star trail like the photo the Bird Photographer took in the middle of the California desert, a time-lapse of stars burning or dying or traveling as the world spins on its axis, but that might be a mixed metaphor, and I  don't know physics either or even photography. Black holes. No man's land.




This is not fiction.


Stephen Hawking said, The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.


18 comments:

  1. Fucking hell. So nice to know that your child is an experiment. No wonder you don't trust neurologists.

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  2. I would lose my shit daily after years of the bs you have endured. Fuck.

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  3. And then you understood that no one knew, not really, and how your despair did not fill the entire cosmos with itself mystifies me completely.

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  4. It's got to be scary to know your guide across this vast uncharted landscape appears to be basically making it up as he goes along.

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  5. This is so beautiful, Elizabeth.

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  6. Fascinating read which reminds me of this: My nephew, at age 2, began having seizures and beating his head against the wall regularly. We were very poor and took him to a state run hospital. Also, he had never talked...not a word. The doctors put him on Phenobarbital, which he took for about a year, then was weaned off. He never had any more seizures and began talking one day in complete sentences. My baby brother who was a year older often teased my nephew about the head banging. Well, bottom line, my nephew was the first kid in our family to graduate (with highest honors) from college. He's now a detective in Austin, Texas. To this day I can see his suffering as a child and how worried we all were. I was a teenager at the time. Life is strange.

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  7. Your "interesting ideas" (spawned from impeccable instincts, intellect, and fierce mother-love) could - and do - fill a universe that unfortunately many physicians are unable to witness because they are too busy looking down at their diplomas and poring through their books and generally ignoring the human beings they are charged to serve while they search for some concrete KNOWABLE bullshit. Thank GOD your children (and the rest of us) have you. Thank GOD!

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  8. The arrogance of medical *experts* is unbelievable. Your words put them to shame.
    Beautifully written and what a magnificent picture!

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  9. That picture is breathtaking. Carl is an amazing photographer. Sabine said it so well about the arrogance of the experts.
    Xoxo
    Barbara

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  10. Such a gorgeous piece of writing and deep thinking.

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  11. "The landscape changed in a moment, over the telephone. The tiny little mother mind™was born in that moment, and I'd describe the birth as a kind of star trail like the photo the Bird Photographer took in the middle of the California desert, a time-lapse of stars burning or dying or traveling as the world spins on its axis, but that might be a mixed metaphor, and I don't know physics either or even photography. Black holes. No man's land."

    All that you wrote and Carl's photo. Visions of the power of mothering and the limits of medical science.

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  12. You are an amazing woman. Simply amazing, in every way.

    Love to you

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  13. I cannot comment. Sorry, I am lost for words (it doesn't happen often, only when faced with outstanding writing like yours).

    Greetings from London.

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  14. The illusion of knowledge... that conveys perfectly how I view the 'experts' opinions and treatment plans of such conditions as serious mental illness and of conditions such as what your Dear Sophie has endured. It's all so experimental and typically so annoyingly arrogant... and yet we're expected to 'Trust'and not question... I am still not able to. That Star Trails image is Amazing!

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  15. Carl’s photo is amazing. I will never get over this story either. The clusterfuck.

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