"If he is not responding to treatment," he said. "It would actually be cruel." He then explained that, for a critically ill person, starvation is not the cruelest fate. Persistent maintenance of life signs is.
I hated him.
I hated that doctor, and I hated his office. I hated the family conference I'd been called to, hated the cancer that reduced my husband, a new father with a successful business, into a thin wraith who could hardly muster energy to speak. Most of all, I hated my helplessness. So I fought.
I fought for liquid nourishment. I fought for more treatment. I fought for oxygen to be delivered to the house. I fought for different answers. I fought for Gil's life, my life, the family we had just begun.
Then the doctor asked Gil what he wanted. And Gil said. "I just want to be at home, and I want everyone around me, and if the cancer isn't responding to treatment I want treatment to stop and I want hospice care."
What a blessing. Gil could speak. He could state his wishes, plainly and before witnesses. We didn't need an act of Congress or a legal judgment to know. We just asked.
We can't ask Terri Schiavo. We can only face her helplessness, and our own. And in the face of helplessness, all of us-those still blessed with the fighting fists of life-we seek different answers.
Answers like the ones Michael Schiavo has sought ever since his wife's heart stopped in 1990 and he was faced, a man still in his twenties, with the ultimate questions of life and death.
When someone we truly cherish is ill unto death, we make fools of ourselves, we beg and plead and bargain for one last moment, one last look, one more chance to say something, anything, or to simply be there holding our beloved's hand. To see the flickering soul in those beautiful eyes, as Alice Chasan so movingly describes. The mere presence of a loved one, of a fellow traveler and sufferer, is one of the blessings of life.
We might also want it to end-right now, as soon as possible-so as not to prolong the suffering life brings from all directions, the bitter reminder of how terribly wrong our lives can go.
There were times-many times-well before the fight was over, that I bundled the baby in her bouncy seat downstairs so I could go upstairs to administer Gil's medications, and I thought to myself, "Let it end, let it end, this isn't a life at all." There were times I really wished I could leave. Other times, especially at the end, all I wanted was one more day, one more conversation with Gil, even the slightest hint of a normal moment, and I would have traded any amount of suffering for it.
And so we the surviving, the caretaking, the huddled circle in vigil, we rage at each other, we argue and manipulate and bring up old hurts. We fight to be the one who knows a loved one's wishes, the one who loves the best. It's not pretty. Mostly, we try to see what we want to see: life as permanent and safe, as an unmitigated blessing, as a gift to which all other concerns should be sacrificed. We want this person to live, to live among us, to stay. Or we want to preserve our memories of better times, not face the living corpse stretched out in a hospital bed, put an end to the mockery of life that trauma has visited on us. Tube in or tube out, we are all of us pro-life.
So if I'd been faced with the choices Terri's family has had to make, if Gil hadn't been alert and clearly in a terminal condition, if the decision were left to me and to his parents, what would we have done?
And now, as the mother of a thriving six-year-old, a woman who has chosen to be a wife again, and a stepmother, what would I do if it was my little girl, if she seemed to see me, to know my voice, to feel my fingers in her hair?
I actually see great bravery and great love in both sides of the battle. None of Terri's family has walked away from their responsibility to her. The tragedy is in the vast difference between them, and in the inability to reach Terri herself, to ask her: Do you want to stay?