‘Your wife would not want to be a vegetable.”
I was about five minutes into a conversation with a hospice nurse. My wife was not in need of hospice care. After a lengthy hospital stay, she was manifestly awakening from a medically induced coma. The next week she was to leave the hospital for long-term rehabilitation or nursing care — however it might turn out. Her social worker, however, had suggested I have this conversation to gain a feel for the assistance available to us, should we need hospice later on.
As a clergyman, I had seen the good of hospice care. My first experience, a generation ago: There was an elderly man who was dying, and hospice helped him be able to do so at home. His wife and his daughter could be with him from day to day, but they did not have to shoulder everything. Hospice got others to come in to assist with things like bathing and medicine. They also provided a hospital bed and many specialized things that eased caring for him. I think they even coordinated the caregivers. It struck all of us as wonderfully humane. Here was a dying man who did not have to choose (or whose family did not have to choose for him) whether to be cared for medically in a hospital or abandoned medically at home.
It is a scene often played out. Into a front room a hospital bed is moved. There are tables with medications and so forth. There are people experienced in making the dying comfortable both in body and in spirit. They show love and respect for the human body with a touch on the brow, with a cooling washcloth, through cleansing and turning. Death is not easy: The body rightly resists. But there is more and more that can be done to alleviate pain. Sometimes it is only days or a few weeks; sometimes this care continues for months.
What had impressed me about hospice was its respect for the naturalness of the human being, both body and soul. Hospice sees that Socrates was wrong: We are not souls trapped in bodies, and so the body should not be treated as something that, when it becomes burdensome, should be shucked off as quickly as possible. But neither does hospice see us as completely physical with no remainder: for if that were the case, then we would strive unceasingly to extend bodily life no matter the cost.
In the terms of my confession, hospice had impressed me as a profoundly Christian way to approach death.
And now, to my shock, a hospice nurse, who had never met my wife and who had met me just minutes before, was telling me that she was sure my wife would never want to be a vegetable.
Had I possession of my wits at that moment, I would have replied: “Ma’am, let me assure you, my wife will never be a vegetable. She is and will always be a human being.” Human beings do not turn into vegetables. (Nor, for that matter, do they turn into beasts or angels; but that’s another story for another time.)
The Diving Bell and the Butterfly is a thin, limpid book written by a man who, in the prime of life, had gone into a coma for several weeks and emerged with “locked-in syndrome.” He was unable to speak, unable to move his limbs, and had little feeling in his body. He couldn’t pick up books and read them; he couldn’t eat and swallow. Because he was a prominent figure in France (the editor of Elle magazine), his situation was well known. He learned that he was talked about over fine food in fashionable restaurants. “Did you know that Bauby is now a total vegetable?” one elegant woman was reported to have said. Her companion replied, “Yes, I heard. A complete vegetable.”
Your mind is a way of speaking of your soul. It is there regardless of whether you have your legs or your lungs or your ovaries or your testicles. It is there even if you no longer have a functioning brain.
When the “vegetable” Jean-Dominique Bauby learned he was being spoken of that way, he wrote it into his book. You ask, how could he possibly write a book in his condition? There was a lovingly attentive therapist who noticed a very small thing and realized its significance. She saw that Bauby was able to blink one eyelid (but not the other). Able to blink, he would be able to communicate. She prepared a card with the letters of the alphabet in order of frequency of occurrence (in French). A visitor to Bauby would go down the alphabet on this card (E . . . S . . . A . . . R . . . ) until reaching the letter Bauby wanted; then he would blink. Letter by letter, with painstaking love, he was able to communicate.
So he lived, locked in, but able, eventually, to compose overnight short chapters of a few hundred words. And when his therapist came, he would blink out his new paragraphs. The Diving Bell and the Butterfly is the result.
It is a short testament that speaks the world of the dignity of human beings. Even those who, over forkfuls of Welsh rarebit, are called vegetables.
Why is it that we are tempted to speak of vegetables when we are faced with people who have lost their ability to communicate with the world? After all, it might be said that those elegant French ladies just happened to be mistaken about a matter of fact: Bauby wasn’t a vegetable, because he could still communicate. But if things had been otherwise, if (say) he had lost his ability to think and compose sentences—if (that is) there had been nothing “there” to be locked inside his “locked-in syndrome”—then he would have been a vegetable. Right?
I do not think so. And this, I believe, is important for our cultural moment. Human beings do not become vegetables because the mind is not the brain.
The brain is a magnificently complex piece of meat, folded and twisted and protected and, in our species, uncommonly heavy. It is the organ that keeps everything else going. And like our other bodily parts — our limbs, our heart, our sexual apparatus, our lungs — our brain can be diseased and lose its ability to do its work.
But if your brain stops working well, you are not losing your mind. Your mind is a way of speaking of your soul. It is there regardless of whether you have your legs or your lungs or your ovaries or your testicles. It is there even if you no longer have a functioning brain.
As it turned out, my wife died suddenly just a few days after that conversation with the hospice nurse. Her brain just wasn’t able to keep her body going. But right up until her death, she was present to those who visited or cared for her. Even in the induced coma, even when she could not speak and gave no signs of responding to the stimuli of the world around her, she was present because her body was present.
Because of our bodies, we human beings are able to be present one to another. Indeed, the body is the sacrament of presence. This is true just because it is a human body, not because of anything it is doing presently.
But the brain (a part of the body) is not the mind. The mind is there even when the brain can hardly work.
So: we do not become vegetables. And that has ethical implications. We can never treat a human being as if she were a vegetable. We will not eat her, for instance. Nor will we do anything that would deny the reality of her humanity. Undeniably, there are hard questions at the margins: for instance, whether to administer antibiotics to a terminally ill person, or whether to administer nutrition in every case of a person who cannot otherwise eat. But however these questions are answered, we must never allow our language to put out of our sight our humanity. Thanks to our bodies, we can be present to one another, we can be with one another in care and community, from life’s inception to its end.