9.20.2013

friday faves - humpty dumpty kid

Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall;
Threescore men and threescore more,
Cannot place Humpty Dumpty as he was before.

—English nursery rhyme

They keep coming, these seizures, reliably, awfully, no matter what we do to halt their progress, dampen them like hot embers being fed a dry breeze. They’re a squirrely moving target, at a thousand yards in high winds, a low sun—blood-red and blinding—nearly impossible to hit, no silver bullet to employ.

Every time Calvin has one (I fear he did again in the middle of the night last night—though I can't be completely sure—and it’s only day eight since his last one) I think of that eighties anti-drug television commercial with the sizzling egg in a hot pan, “This is your brain on drugs,” the voice-over says. I can only imagine that the unharnessed electrical activity ravaging Calvin’s brain must be frying it inside out, like a microwave or a white-hot poker jabbing, burning and scarring his delicate, developing tissue. Every seizure must be like a mini nuclear bomb, the millions of tiny molecules and cells in his young, growing brain—his brain that is trying so very hard to learn essential, foundational things—getting scrambled into some unrecognizable, unsolvable puzzle that can never be put back together again or made sense of. My poor little Humpty Dumpty kid.

The lessons, skills really, that Calvin is trying to learn just keep getting interrupted, like a parent trying to digest a newspaper article while every few minutes his kid, interrupting, yanks on his shirtsleeve to ask him a question, “Daddy, Daddy, Daddy.” The neuropathways, which my son is so lacking in, seem to get tangled in menacing knots so tightly the arteries are simply cut off, leaving a series of dead ends—roads that go nowhere—abandoned, left to crumble, decay and wash away with the next flash flood that occurs inside his precious skull.

I see that frying egg every time we increase Calvin’s anti-seizure drugs, too. On top of the debilitating, brain-rotting seizures go the spuriously innocuous anticonvulsant medications meant to stop the seizures by slowing brain waves. Slowing brain waves. That equals slower thinking, slower reaction time, slower development. At what point, since we keep having to increase Calvin’s seizure meds because there is no cure for epilepsy, will his development simply plateau? Will he be locked in at a one or two-year-old level for the rest of his life? Will he regress? Will he die from a seizure that just never stops like a runaway train that derails above some dark, craggy ravine, like poor Humpty Dumpty who fell off of a wall?

Not if we can find a cure. Give to cure epilepsy: http://www.calvinscure.com

Original version (amended for today) published September, 2011.


6 comments:

  1. Hey there! Because I write agreement posts 99/100 times, I have to critique you on this one. Your choice of the verbs, "frying", "jabbing", "burning," and "scarring", I think are the types of metaphoric words we must dispel in relation to epilepsy because those are the types of words that both reflect and perpetuate the movement's paralysis in fear. Americans still treat epilepsy as a different type of illness and I think that we must medical-ize it in order to decrease its stigma. Your image of the mini nuclear bomb is powerful, but maybe powerful to the point of misleading. Although prolonged seizures have been associated with decreased grey matter and scarring (I have some beautiful sclerosis on my right temporal lobe as my own souvenir), I don't think that seizures are commensurate to nuclear bombs. (Although, trust me, I know they are scarier than anything else I will experience). And most of the "this is your brain on drugs" commercials have been debunked. (The lovely one that features a brain that looks like Swiss cheese after taking ecstasy, for example, is an fMRI image measuring heat--the cooler areas appearing as holes). I know that your language reflects an immense hatred and fear towards a disease that I feel is horrid from the bottom of my heart. But when we speak in such severe terms, I have to wonder if we are perpetuating the misunderstanding that we are seeking to dismantle. I hope Calvin is doing better today!

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    1. the problem is that we are seeking to demystify epilepsy and let the world know people with it can continue to live "normal" lives while at the very same time we need to let the world know that it is far from a benign disorder, that in fact some people live terrible lives with epilepsy, lose skills, die. tell me how to do both and i will. too many people, likely the ones that fear seeing a seizure, also think it is a benign disorder where you take a pill and everything is fine. far from the truth. and these images are my feelings, not science.
      another thing we need is for people who have epilepsy to come out and tell the world that they have epilepsy without fear, without shame, you know?! that would do the most for increasing awareness and understanding, don't you think?
      your perspective is most appreciated, as always.

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  2. What a paradox, huh? I think, maybe, that the problem is that epilepsy is seen in extremes. People believe that people with epilepsy are geniuses or stupid, devil-possessed or saints--still! I think what I was trying to say is that I think that we must spread awareness and some fear with the plain facts--yes, epilepsy kills, yes, the debilitation of the disease is vastly underestimated. But, I think that it is when we get everyone to stop talking in metaphor ("a lightning storm in the brain") and more in reality ("my kid's face turns blue twice a week") that we will bring epilepsy away from the extremes and towards objective knowledge. And I definitely agree that people need to "come out" about their epilepsy. I also always appreciate your words. Thanks for all you do.
    ~j

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    1. i'm not sure i agree that the metaphor is the problem. in writing creative non-fiction i believe metaphor is essential, and essential—at least to me—to express what someone living with a child who suffers from epilepsy feels. i still think folks need to come out of the closet. that will do the most for awareness. until people come out, we will have trouble seeing objective knowledge and epilepsy will continue to be seen in extremes. advocate and put your name to a story. we no longer live in the dark ages.

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  3. Agreed. Have you ever read Susan Sontag's "Illness as Metaphor?" She wrote it in a rage after she was diagnosed with cancer (which was then more stigmatized). Super interesting if you get a chance. But, yeah. More of us do have to "come out." I am out loud and proud on my campus, but I realize I'm in a really privileged situation. If (hopefully when) I go to grad school/med school, I am aware that it will get harder. I have talked with a brilliant physician whose intelligence was questioned and who was nearly fired from a MEDICAL faculty due to her seizures and an MIT prof whose colleagues questioned her sanity and ability to build robots. It's a Catch 22--people don't want to lose out on opportunities due to stigma, but the stigma will only decrease once we make the illness more known. These are the things that keep me up at night, Christy...

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    1. yep. it's a frigging catch-22! xooxoxoxxo

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