Tuesday, July 28, 2009

In There

I'm afraid I'm going to end up hating Infinite Jest.

Not because of its length--I'm tripping along slightly ahead of schedule, although I always feel vaguely that I should either be farther ahead or staying with the pack--or its lengthy sentences.

Not because the math--especially the math+politics+game recipe of the Eschaton scene--makes me betray the sisterhood, go all Barbie and squeal "Ew! Boy stuff!"

Not even because I can't bear to see Hal shut down, although that comes close.

It's because of what's going on in my life this summer, which I will forever associate with Infinite Jest. I cannot go to the Olive Garden because when my first college boyfriend broke up with me, we had plans with another couple at the OG that night, and he felt that we should still go and pretend to be still together. I cannot drink vodka or banana-orange juice because...well, I suspect you know why. I hate the smell of hospital receiving blankets because they bring back the stress of T.'s hospitalization.

This summer I found out that my beautiful baby boy T. is blind. It's hard to get this across to health professionals sensitive to the continuum of "visually impaired," etc. but I think one expressive term would be "pretty darn blind." As in, please stop waving that thing around, he really really cannot see it.

And later this summer, this week, I found out that T. is having seizures. Seizures that are highly correlated not only with mental retardation, but also severe behavioral problems in the years to come. The neurologist tells me that quick diagnosis--for which, I think, in his cold doctory way he is trying to give me some credit--and prompt treatment makes for a better prognosis.

I keep thinking about Hal and his "I am in here." I know, with certainty, that T. is in there. Whatever happens, I intend to devote myself to assuring him that we, who love him, know he is in there.

When I go to the hospital today and see my little sweetheart hooked up to the forty-some wires of the EEG, I will be grateful to have a big book to read. I love Hal, and Pemulis, and Mario, and Joelle, and Gately, and I actually kind of like the endnotes, and Eschaton seems like something R. would love even though I can't get into it myself, and I kind of identify with Avril...but I won't want to read this book again.

9 comments:

Walt Pascoe said...

Too moved to comment intelligently. Just want you to know that I, and many others , will be thinking about you today.
wp

Levi Stahl said...

This sounds very tough, Momvee; I'm sorry you're having to go through it. Best of luck working with the doctors, and with your little boy.

Lisa said...

Like Walt, I am too moved to say anything except that I am thinking of you and your baby.

Matthew said...

My son has autism, a primary symptom of which is his difficulty in using language socially. He has needs and desires like any other five-year-old, but is often stymied in his attempts to communicate these feelings to other.

Which is to say, the first chapter in IJ resonated with me as well.

"Hang in there" seems woefully inadequate for what you're going through, but hang in there all the same.

Matthew

Mary P Jones (MPJ) said...

Hugs, MomVee

ergo said...

And more hugs, MomVee

oddharmonic said...

My husband had an EEG this spring and the hardest part of it for me was watching him twitch and grab the bed rails for dear life each time a round of photic stimulation began. He said the flashing lights made him feel like he was falling.

I hope the testing helps nail down a diagnosis and lead to a treatment plan that's best for your son and your family. Not knowing is hard.

Leslie said...

Hugs to you, MomVee. I can totally understand your connection of sights/places/sounds with events in your life. There are songs I just can't listen to.

(and my drink to avoid is LI Iced Tea).

C-Belle said...

Oh MomVee... *BIG HUG*