In October of 2001, our son was born with brain damage. The scan of his brain had so many light patches it looked like the cheese cloth we used to separate the berries from the juice when my mother, sister, and I would make blueberry jam during my parents’ “back to the land” phase. The official diagnosis was hypoxia, the result of a birthing center experiment gone terribly wrong. Too little oxygen made it to his brain when the violent contractions of a labor that “failed to progress” wiped out the fragile life he’d gained in that nine months’ gestation. It ended sixteen days after his birth with a plastic packet of ashes in my hand.
I held him just once, because the nurses in the neonatal intensive care unit insisted I should. Mostly I would look at him, my throat too constricted to swallow, then bend my head, close my eyes, and turn away, thinking not mine, can’t hold, not right.
He looked perfect: ten fingers, ten toes, an infant’s rounded face, his father’s bow mouth, eyes that briefly registered pain, and a forehead that smoothed when my voice came near.
In the sixteen days that Drake lived, was he “human”? With so many nerve centers blotted out, his capacity for language, reason, and even sight blotted out, what should we have called him? Briefly, in his eighth day of life, when his physical functions seemed stronger and it looked like he might live, we had a meeting with the ethics board at Strong Memorial Hospital in Rochester, New York, to determine what decisions we could make about his care if he lived, and even whether he should.
His father and I didn’t think so. If he lived, the doctors told us, he would never walk, or talk, or develop capacities beyond those of an infant just born. Under no circumstances, my husband and I kept saying, should an infant like this live. What kind of life would it be?
The ethics board said that if our son could breathe on his own after the doctors took out his breathing tubes, we had no choice. We’d have to arrange for care, in our home or in a nursing home. I imagined a boy’s teenaged body, my hands turning it over, unable to move for itself, a blank face with eyes that had no sight. No. No, we both said. Later, when the ethics board had left, our doctor said, I can give him morphine, looking me directly in the eyes. I can give him morphine, for the pain. It slows the breath.
Was our son simply matter, just flesh? Everything I knew and believed led me to think so. Was he “human”? Everything I believed told me no. What purpose could he serve if he lived? Surely Drake could have fulfilled no purpose in the usual sense. But would he be sentient, could he feel, and if so, was that enough?
In the field of behavioral neuroscience, researchers such as Jaak Panksepp have actively challenged the precedence given to cognition over emotion. Top-down cortical to sub-cortical perspectives, Panksepp argues, implemented without a simultaneous attention to non-cognitive modes of bottom-up, developmental thinking, prevent progress in research on neurobehavioral disorders and psychiatric illness. The “lower” networks of the brain are foundational in the “higher” cognitive, information-processing networks of the mind, and brain-behavior relationships are most effectively explored taking those “lower,” affectively based networks into consideration when examining both human and animal behavior.
What we faced with Drake was an entirely non-cognitive existence. He could feel pain, the doctors told us, and minimal pleasure, and something like fear or disturbance. In other words, Drake’s “lower,” sub-cortical brain networks would be functional, but his cortical networks never would. Is the dividing line between “animal” and “human” cognitive capacity, then? In Drake’s case, though, even simple mobility would be impossible. No movement of mind, no movement of body—sentience in its most basic form. Human?
The evolutionary philosopher David Livingstone writes that what defines humanity—the one thing that separates it definitively from all the other animals—is our capacity for dehumanization, the kind of reflection that causes us to make categorizations and exclude some groups within our own species from its purview. Biologist E.O. Wilson says humanity lies in the ambiguity between good and evil that is the result of individual and group selection, as these have evolved through the tension between allegiance to oneself and one’s kin and our allegiance to the larger group and the moral decisions this ambiguity necessitates. And neurobehavioralists like Dr. Panksepp think that what makes us human is the capacity for meta-cognition, or thinking about thinking—that animals lack only that kind of direct reflection since they feel as we do, using the same sub-cortical circuitry we do, and have varying capacities for cognition. But by any of these definitions, our son would never be able to fulfill the requirements for “humanity.”
I’ve always identified more with animals and their direct, uncritical affect and expression than with humans and their endless thinking. Yet here I was, looking down on my son, who may have affective capacity, but not cognitive. I wanted, more than anything, to wrap him up in a blanket, adjust the pink and blue cap that covered the electrodes on his scalp, and bring him home. But I’d seen the brain scans, the lighted-up portions, the holes. I knew what capacities those patches of light wiped away, and, knowing this, as much as I loved my son, as much as my strongest urge was to sweep him up and hold him close, I knew that I wanted him to die.
When they took the breathing tubes out, he breathed on his own, and for more than a week, it looked as though he would live. How strong he was, they kept telling us. His autonomic functions and much of his brain stem were intact. Hands turning a body years hence. Morphine for pain. Eventually he let go, and the body I held in my hands on the night of his death was something precious. Precious, but not—in any way we could conceive of it—human.
Published on 1 October 2012