EXTREME Measures

By Kahn, Paul | The Humanist, July 2001 | Go to article overview

EXTREME Measures


Kahn, Paul, The Humanist


Annie leans over the hospital bed to brush her son Benjamin's hair. "You're so handsome. You're the handsomest man in this whole nursing home," she declares and kisses him on the cheek. But Benjamin doesn't respond to these endearments. He can't. His higher brain--the brain that could tell him that this is his mother and she loves him--doesn't function. Sixteen years ago it was irreparably damaged in a motorcycle accident. For sixteen years Benjamin has existed in the impenetrable twilight of a persistent vegetative state. And for sixteen years, several times a week, Annie has reenacted this scene of love, loss, and longing.

Today is different because I am a witness to these private actions. Annie has allowed me to enter her complex world, in which many difficult questions are tangled. What creates a sense of self? What obligations bind us to each other? How do we value individual life? Can anything good come out of this kind of misfortune?

I am here because I believe that the philosophic contemplation of these questions can enrich my appreciation of life. More particularly I am interested in Annie and Benjamin's story because I share something with him: both of us have disabilities. While his cuts across every aspect of his being, mine is purely physical, a congenital neuromuscular condition. Nevertheless, we both are subject to cultural attitudes toward disability.

Thinking about the questions that Benjamin's continued existence poses, I realize that, like most people, I would dread having to commit myself and put my answers to the test of action. Annie has had to do just that. So I have also come to appreciate the love, courage, and intelligence she has brought to this challenge.

Whatever strain sixteen years of dealing with Benjamin have placed on Annie, it hasn't bent her physically. At fifty-three she is straight and spare. She has long, ash-blonde hair and wears an abundance of rings and bracelets. To me she looks like a liberated child of the 1960s grown into graceful maturity.

Handling Benjamin with gentle competence, Annie continues to groom him. She shaves him, brushes his teeth, and washes out his ears. I have never before seen someone in a coma, and I'm surprised that he isn't attached to a ventilator or IV line. The only technological assistance he needs to exist is a feeding tube. He also has much more movement than I expected. When Annie does something that discomforts him, such as poking a Q-tip in his ear, he flails his arms, which are distorted by contractures. He grimaces constantly and blows bubbles of spit like a baby. In fact, his puffy, blank face and uncoordinated movements make him look like a huge baby, although he is really thirty-five years old.

Catching myself using this simile, I realize that I am trying to categorize him into something familiar. But nothing fits, and this leads to a distressing cognitive dislocation. He is not a man and not a baby. He is not conscious and not totally insensate. He is not alive in most of the ways that life usually manifests itself in human beings and not dead either.

I wonder if a human being can be so damaged that he or she is no longer human and, therefore, not protected by law. Then I realize that this is the argument made by some people who advocate the killing of disabled infants. As a person with a disability, I have always reacted with instinctive abhorrence to this idea. But the extremity of Benjamin's condition forces a reexamination. What makes us human? Consciousness? That we share with all animals. Self-consciousness? If so, then by definition every person is a closed system, and nobody can ever know for certain what is happening inside another person's mind.

When Annie changes Benjamin's johnny, I catch a glimpse of his flaccid penis, and I think of the rich phallic symbolism of the motorcycle he rode into oblivion. I see him at the age of nineteen, strong against the buffeting of the wind, the powerful engine roaring beneath him. …

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