June 30, 2006

Schuyler's Brain


Schuyler's Brain
Originally uploaded by Citizen Rob.
I've been thinking about Schuyler's brain.

It's been three years since the Yale School of Medicine took the MRI photos that introduced us to Congenital Bilateral Perisylvian Syndrome. It's a clumsy mouthful of words that, for reasons I can't fully explain but is probably a tiny act penance for my genetic guilt, I never copy and paste. I always type the words out.

This is it, by the way, in all its mysterious glory. Schuyler's brain. This was taken three years ago, but I assume it looks about the same. It won't heal, after all, although it is also worth pointing out, in that swell, "welcome to Holland", glass-half-full sort of way that it's not going to deteriorate, either.

It's the place where her monster lives, the thing that drives her, albeit without a license and with no regard for the law.

It's the mass of electrified tissue that will likely, one day when we least expect it (and we always expect it), begin to misfire and send her into seizures.

It's the echo chamber where she hears all the words that she knows, the full sentences that she tries to speak. It is also the hall from which those words can never escape except as a mysterious almost-language of vowels and inflections and pitch, but no hard consonants.

And it's also the place where King Kong lives.

Schuyler's brain is the file cabinet where the theme songs to Catscratch and Spongebob are stored, and where the lyrics and tunes to Wheels on the Bus and Itsy Bitsy Spider sit alongside those to the Village People's YMCA and James Brown's Sex Machine.

It is the art gallery where her portraits of toads and her parents (always strangely similar in general appearance) are hung, ready to reproduce in cheap restaurant crayon at a moment's notice.

It is where the lists of things that she IS and is NOT are posted. Both lists are constantly under revision, but currently the list of things she is NOT includes monkey, chicken, dinosaur, boogereater, princess (a recent revision; apparently she has abdicated the throne), good girl and stinkbug The list of things she IS? Mermaid. That's it for now. She's a minimalist.

Schuyler's brain is the place where she remembers that while no, she does not eat bugs, her mother apparently does, because if I ask her if she eats bugs, she says "Noooooo" and then either points to Julie or signs "mother" and laughs like it's the funniest joke ever, which it sort of is.

It's the computer that forgets to go to the bathroom when she gets overly excited (with predictably disastrous results) but remembers every morning as she's running down the hill at summer camp to turn and blow me a kiss, an act that should help to untie the knot in my stomach that I get when I leave her with other people, but doesn't, at all.

Schuyler's brain is is the thing that amazes us all with what it can do and breaks our hearts with the few things that it stubbornly refuses to do. It is the place where she runs through life as a little girl like every other little girl in the world, and the cage where she exists as an entirely unique creature, never alone and always alone.

16 comments:

  1. Well put as only you could put it. It's completely glass half full and simultaneously, half empty. She is a gift from God as all children are but she teaches us. I say us because we, the ones who come here to read, are completely enamored with her. I have a son who is her age (but he is soon to be seven, within two weeks) and I find him amazing and stinkerific all at the same time. There isn't anything better than having that bond. You and Julie have a strong bond with Schuyler and its magnified by all you have been through. Regardless of anything else, that is the bottom bottom line. No one else can even peek in your world truly, we can surmise, we can suppose, we can try to relate and mostly, maybe just maybe we can. But it's a big maybe. The gift lies in her. It's your love for her, sure, but she is the gift. The Monster in her brain, is the horrible bad guy but she soars above it all. She ignores the bad guy and she is your gift. In a way only she can be.

    I know this, I can sense this, I read a little between the lines...because of our loss.

    My hats off to you. You are a very good Daddy.

    Jenn

    ReplyDelete
  2. That's an amazing entry. I'm amazed at all our brains. Often broken brains reveal more about the brain's mystery of function and individuality. But it is still a great mystery even to scientists.

    This entry is an example of why I keep coming back to see if you've written anything.

    "It is the art gallery where her portraits of toads and her parents (always strangely similar in general appearance) are hung, ready to reproduce in cheap restaurant crayon at a moment's notice."

    Wow...that's great and the whole piece is full of gems. Making her brain a place full of lists, art galleries, monsters, memories and computer parts is a wonderful metaphor.

    ReplyDelete
  3. Anonymous7:35 PM

    This piece is affecting beyond my ability to express in words. Your writing gets better, crisper, cleaner, brings us ever closer to the experience of knowing and caring for Schuyler. Thank you.

    Margaret DeAngelis
    http://www.silkentent.com

    ReplyDelete
  4. Anonymous9:55 PM

    Beautiful post about your beautiful girl.

    ReplyDelete
  5. I surfed over to The New Yorker just after I'd read your post. There is a not-entirely-relevant-but-follow-me-here article up this week about hemispherectomy, a procedure wherein docs remove half a patient's brain... and the patient thrives. The medical community has no idea why.

    And I guess I draw a little bit of hope for Schuyler from this, this mysterious power of the brain to work itself out. "Schuyler's brain is the thing that amazes us all with what it can do." And with what it *will* do, I think.

    Keep writing.

    ReplyDelete
  6. It is where the lists of things that she IS and is Not are posted. Both lists are constantly under revision, but currently the list of things she is NOT includes monkey, chicken, dinosaur, boogereater, princess (a recent revision; apparently she has abdicated the throne), good girl and stinkbug The list of things she IS? Mermaid. That's it for now. She's a minimalist.

    Like everyone who has commented so far, I'm in love with this piece of writing. But this part . . . is all love for Schuyler and all little kids stretching and struggling to show us who they are. A little dude very dear to my heart has recently discovered the joy of nipples and being a mammal. And although he is not a big talker much of the time, he's very hot on getting everyone around him to discuss the Mammal Issue. My favorite exchange with his mother recently:

    "Mommy, Momas [Thomas the Tank Engine---who is totally his diesel boyfriend] mammal?"

    "No, Thomas is a machine, you know that."

    "Doggy mammal?"

    "Yes, dogs are mammals."

    " . . . goat mammal?"

    "Yep, goats are mammals."

    "Goat CHEESE mammal!"

    ReplyDelete
  7. Anonymous11:46 PM

    I'm a stranger to you, and you do realize that these writings cause us to love Schuyler, and you and Julie, right? We do. We strangers, out here in anonymity. We love you because of these words you share.

    ReplyDelete
  8. Anonymous6:15 AM

    Long time lurker here. I loved the entirety of this piece, Rob, although your cage metaphor at the end had me wondering, and hoping that Schuyler will one day be able to express herself as eloquently as her daddy with the written word. Best to you all.

    ReplyDelete
  9. Anonymous8:35 AM

    nothing to say that everyone else hasn't already said. beautiful, painful.

    ReplyDelete
  10. For what it's worth -- Her brain may be an undiscovered country, neurologically speaking. But I don't know that I've ever seen photos of a little girl who smiles as much and as happily as your Schuyler. Maybe that is the most powerful signal of what's going on inside.

    ReplyDelete
  11. Anonymous11:28 AM

    I've been reading your work for a few years now and this entry is with out a doubt the best and most beautiful. Loved the part about the art gallery. I've never posted here or emailed you, but I had to this time. Thanks for sharing this with us.

    ReplyDelete
  12. Anonymous3:27 PM

    This was a beautiful entry. If Schuyler ever knows only one thing, I hope it is that how truly loved and adored she is by you.

    ReplyDelete
  13. Anonymous2:48 PM

    What an amazing writer you are, Rob. Realy, you're getting better and better. I can't wait to read your book.

    And after that, perhaps a novel?

    ReplyDelete
  14. Hi Rob,

    I'm writing from the waiting room of my town's MRI center, as my husband gets his own nice little brain photos taken. Yeah, they have internet access in waiting rooms now, I guess. We don't know yet what they're going to find, if anything, but I just wanted to say that your posts about Schuyler's experience has been a lot of comfort to me over the last few days, odd though that may sound. So my thanks, again, for your blog.

    Aja

    ReplyDelete
  15. Anonymous3:42 PM

    Hi. I ran across a link to your blog and read many posts. While I dont agree with some things you do, I DO feel for you and your daughter and want you to know that I will be praying for your family. I have never heard of this condition. My son has a skin condition that isnt talked about much and most people dont know about it. I know that is frustrating for me. I am sure for you as well. Just know that in Texas there is a crazy lady you dont know praying for your daughter.

    ReplyDelete
  16. Anonymous3:49 PM

    Oh, and she is absolutely beautiful!!

    Psalm 139:13-16
    13 For You formed my inward parts;
    You covered me in my mother’s womb.
    14 I will praise You, for I am fearfully and wonderfully made;[b]
    Marvelous are Your works,
    And that my soul knows very well.
    15 My frame was not hidden from You,
    When I was made in secret,
    And skillfully wrought in the lowest parts of the earth.
    16 Your eyes saw my substance, being yet unformed.
    And in Your book they all were written,
    The days fashioned for me,
    When as yet there were none of them

    ReplyDelete