Thursday, March 24, 2005

if it were my daughter

Last week the Terri Schaivo case was something I heard a little bit about on NPR and thought, “Geez, what a mess.” This week, after her feeding tube had been removed and Congress met to decide whether to intervene, I brought up the subject in an after-dinner chat with Husband, who said, “Don’t even get me started…” For the sake of conversation, I had to get him started, so I did. That night we agreed (yes, it does happen occasionally) that it was probably time to let her go, and that Congress was stepping beyond its limits when it intervened to get the case heard in a federal court.

Then I read an article in Slate, from the perspective of a woman with a congenital musculature disorder that prevents her from swallowing correctly. She will probably have to have a feeding tube at some point in her life, and she had a very personal (and very intelligent) response to the various arguments, which you’re welcome to read if you want.

She was thinking, “If this were me…” But my perspective shifts almost immediately to Terri’s mother. I wonder, if Duckie were 41 years old in a hospice, unable to speak or move on her own, basically a “nice bunch of carrots,” what would I do? I would like to think that I’d know, somehow, if there was anything going on in the disaster of my daughter’s mind. But if there were, how would we know? What if Terri is experiencing life on another level entirely – what if she’s perfectly happy in whatever world she’s in? Or, what if she’s in severe emotional pain, or – almost as bad – just freaking bored with the whole thing and ready to move on?

What if my own desire to keep her around skewed my perspective, made me interpret things differently or incorrectly and disagree with all the doctors? Even more terrifying, what if I was right, and I knew I was right, but even the Supreme Court wouldn’t listen to me? Does “brain damaged” mean “brain dead”? And how can you make that decision without sitting in a room with Terri, hanging out with her, checking out the vibe? I would like to think that the doctors who have examined her have done so with enough humanity that if there were a reason to keep living (other than to keep her parents fulfilled on whatever level, and maybe that’s a good enough reason on its own), they would have said so. But what are those reasons, exactly? Are we obligated as human beings to keep living despite whatever indignities are inflicted on us? And are we obligated to keep each other alive, no matter what?

I would also like to think that Terri’s husband is, in fact, acting in what he believes is the best interest of his wife. The idea that a spouse would pull the feeding tube on his or her partner (even if they are estranged and he’s shacking up with someone else) simply to get her out of his hair – well, that’s creepy as hell to me (naïve idealist that I am.) I have read that he has had the option of giving custody of his wife to her parents, who have asked for a divorce decree as well. So he’s had the opportunity to let her live as long as she would with a feeding tube (indefinitely, probably), and he’s not budging from his position. Maybe there’s a good reason for that.

I wonder who’s with Terri right now, in the final days of her life. I wonder if her husband hasn’t already let go emotionally and if her mother and father are freaking out right now, watching their daughter starve to death. (It's pretty certain that there wouldn't be a place for her husband in the hospice room, not with hostile family members there, which is a sorry shame, if he does want to spend some precious time with her.)

But if you’re going to “let someone go”, wouldn’t it be more humane to give her a lethal injection? Why the insistence on letting her die naturally? Is it natural to starve someone? Is it unnatural to feed them using a tube? Is it so bad to give job security to assisted-living nurses who change your diaper and bathe you and keep you company? Is it so bad to be a presence in the life of your parents, even if, in your former life, you might have thought such a situation would lack dignity?

Maybe part of her has already moved on – is she stuck between worlds now? What’s that like, do you think? Throw in the significance of the eating disorder that eventually let to the vitamin deficiency that led to the cardiac arrest that led to the brain damage… well, that’s what I’ve read, anyway… and it really makes you wonder if you shouldn’t be damned careful what you ask for.

These questions are driving me nuts. I’m having problems getting to sleep at night. This is one of those instances, like so many others, where we will probably never really know what the right decision is – we’re outsiders, inquiring minds or not. And it’s become very evident to me that the Libra in my birth chart is still a very strong influence. Weighing both sides of this question is just freaking exhausting.

The “moral” of this story is, I suppose, to make sure you have a living will. But I could write up my decision now, then get stuck in an apparently brain-damaged state or unable to communicate my wishes, and change my mind, right? (Did anyone see that recent episode of ER with Cynthia Nixon, by the way? She has a stroke and can’t speak or move, but is totally lucid throughout the experience. She can speak to you, the audience, but not to her doctors. Her ex-husband is brought in to decide whether she should undergo a potentially life-saving, but risky, operation. What another godawful mess – and don’t tell me it was just fiction, because things like that happen every day.)

I suppose my request – and don’t get excited, I’m not Putting My Affairs In Order or anything nuts like that – is that if I am ever in a situation like Terri’s, that the people who are responsible for my welfare (hopefully not a government agency of any kind) look deeply into their hearts, and deeply into my eyes (if they’re open), and have a long conversation with God before making any decisions. And know that if you act out of love, surely the decision you make will be the right one.


Sam said...

another excellent film to see when considering this dilemma is
"awakenings" with bobby deniro and robin williams. it's based on a true story and really makes you think.
yours is a good blog, andi. it always makes me think.

EB said...

I have to agree with my mom that aside from all else, Terri and her family's sacrificial gift to the rest of us is making us aware of just how important it is to make our wishes known - in writing - so that we do not share a similar fate. May she rest in peace.

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