THE CULTURE OF EACH LIFE

Please, I imagine myself saying to the editor, don't put that picture of her on the cover. Use the picture from years ago, the one in which she is wearing the print blouse, her hair long, her dark eyes stars behind spiky lashes. She looks shy and somehow pleased with herself, slender and pretty and perhaps aware of both facts. Use that picture.

But of course no one will know who that woman is. It is the other face people will recognize, the mouth agape, the eyes glittering but oddly fixed, the hair cropped and androgynous, the antithesis of the girl with light in her eyes.

That heartbreaking second photo is the Terri Schiavo people have seen. An eating disorder may have brought on the heart failure that left her in a persistent vegetative state 15 years ago, yet a young woman so conscious of her appearance has been exposed to all the world in pitiful infirmity. It is a shame that anyone released those images. She should have been remembered for what she was, not what's left of her.

We all know the story now. A raft of doctors said over the years that Terri's reactions were purely reflexive, that she would not recover, that she would never be more than the vessel in which her spirit once lived, like a music box that no longer plays. The courts ruled over and over again that her husband had the right to withdraw a feeding tube in deference to what he said were the expressed wishes of his wife. Her parents objected. Congress passed legislation, spitting in the face of the courts--as well as states' rights and the separation of powers--but even the last-ditch federal jurists had the strength to uphold the law.

Arguments about Terri's case centered on something described as a "culture of life." It is an empty suit of a phrase, absent an individual to give it shape. There is no culture of life. There is the culture of your life, and the culture of mine. There is what each of us considers bearable, and what we will not bear. There are those of us who believe that under certain conditions the cruelest thing you can do to people you love is to force them to live. There are those of us who define living not by whether the heart beats and the lungs lift but whether the spirit is there, whether the music box plays.

There are two different opinions about what the culture of her own life meant to Terri Schiavo. Her husband, Michael, insisted that, like many other Americans, she expressed a strong wish not to be kept alive by extraordinary measures. Her parents said they did not believe that was true, that they wanted her feeding tube kept in and her care transferred to them. One measure of how topsy-turvy this story became was the constant suggestion that Terri's husband should simply accede to the desires of his in-laws, as though that would be a good thing instead of a gutless betrayal. My own husband knows that I never want artificial means to keep me alive. What an insult to my memory and our marriage it would be if he opted out when the going got rough and permitted others to salve their heartbreak by maintaining a shadow of my self.

There are many ways in which this case has been divvied up in public. Spouse vs. parents. Liberals vs. conservatives. Secular vs. religious. But it is truly about that thing that defines free human beings: the right to self-determination instead of a one-size-fits-all approach in private matters, in those issues that take place in bedrooms and kitchens and hospices. It's a primal demand for a personal sense of control in the face of intrusive government, intrusive medicine and intrusive strangers who think holding a crucifix like a blunt instrument makes them righteous when it really only makes them sanctimonious.

Last week my father and I received this short e-mail from my sister, a public-school teacher in San Francisco:

No public official is going to tell me how to xoxo my sister. No church, no court. The Schiavo case has asked us to look at our own definition of life, not at some formless notion cobbled out of the Bible, medical textbooks and impersonal sentiment. My sister's throaty laugh, her prodigious knowledge of history, her garrulous nature: that's the true picture of her, the one with the light in her eyes. She's counting on me to make certain that image is not replaced by something empty and depleted. She's counting on me to safeguard her dignity and her humanity, which are one and the same.

Many of us feel the way she does. Once the feeding tube was removed, polls showed that the majority of Americans believed Terri Schiavo should be allowed to die. That's probably because they've been there. They are the true judges and lawmakers and priests. They've been at the bedside, watching someone they love in agony as cancer nipped at the spine, as the chest rose and fell with the cruel mimicry of the respirator, as the music of personality dwindled to a single note and then fell silent. They know life when they see it, and they know it when it is gone.