Monday, March 07, 2005

Thank you for Playing Double Jeopardy

Today, in the course of 5 minutes, I was informed of one woman going into labor, while another one reported the stillbirth of her child. It’s a train wreck in my heart. It’s, well, Bittersweet. It’s only 9 o’clock in the morning.
There have been a lot of big thoughts pounding around in my head lately. It seems that seeing movies isn’t helping that process much, lately, either. "I Heart Huckabees" gives very little in the way of comfort or guidance to those of us mired in our own existential morass. It made me feel like I was floating in a tepid bowl of wor wonton soup, bobbing up and down with pieces of philosophies. Unsettled. Jude Law needs a haircut. Not a bad movie. It’s destined to be some cult’s classic.
I’ve been thinking a lot about the big "Why?" lately. I guess it comes with the news that there’s a new prenatal blood test that’s coming over the horizon. From what I read, there are fetal cells that make their way through the placental barrier into Mother’s bloodstream. These can now be identified, separated, and tested for lots of things. I became aware of this in the context of someone accusing the March of Dimes organization of an agenda of eugenics. It’s so hard to look at these things without some sort of agenda forming, some group with their feelings hurt, some moral issue to confuse the plodding of pure science toward our own self-destruction. Sorry – lost my head there for just a moment.
Anyway, it started what I’ve come to recognize as a circular process, a Mobius strip of questions that ultimately lead back to themselves, in, out and around in a never-ending loop. Let me see if I can drop you in - you can start just about anywhere:
Is my daughter defective? Genetically so? Societally so? If so, how defective does a human need to be to render them invaluable? Are they mutually exclusive properties? Should her condition be protected, suppressed, or eliminated altogether? (program note: The March of Dimes was created to fight Polio, when it was gone, it shifted to "improve the health of babies by preventing birth defects and infant mortality.") Is Trisomy 21 a birth defect? Is it merely an affect? Should it be prevented? If so, then does that make my daughter a "mistake"? If so, then how should she be treated (by all of us)? If she’s got a birth affect, then, again, should it be prevented, or accepted, protected, embraced, or even revered, as I’m told some American Indian tribes have. It does not make sense to desire that my daughter was born with T21. As much as I love her, I will always miss what she cannot be. Furthermore, with the availability of these tests and abortion, to possess the selfish thoughts that question what might have been, otherwise. How defective am I? Did we make the right decisions?
Underlying all of this are the subtexts and rythms of religion, relationships, science, philosophy, and culture. Which leads me to the blood test.
Currently (as I understand it), a conclusive, prenatal diagnosis of T21 is via amniocentesis. This invasive procedure carries its own risk factors; as such it is often not used, and the knowledge remains inconclusive until birth. It only seems logical that this new test is going to lead to more abortions. I’m not here to debate that topic, it just thrusts me into the vortex, again.
Is my daughter going to be an anachronism, in her own time? Is that a bad thing? It certainly could be if she’s going to be an adult who’s self-aware enough to know that there will be no more like her, that her particular "configuration", if you will, has been eliminated. Can you see the emotional conundrum?
Now, I should ask polio and thalidomide survivors if they mind, I’d think not. I just can’t help but think that, somehow, T21 is different. I have a co-worker with CP who is productive, articulate, and as far as I can see, no less happy and involved in the human experience than I. Now, CP is usually an injury, but my point in bringing it up here is to involve the spectre of degree. How much defect is enough? How ya gonna know, prenatally, beyond the chromosome count? Is it better to be safe, than sorry? Should we even be sorry? Put another nickel in, here we go on another ride.
Like I said, I’ve had a lot on my mind. At least the rain has finally stopped for a while.