The Endless Grief of a Living Death

Nancy, 32, lies in a deep coma in a Missouri hospital. She has been in that condition for seven years. Ed, 58, also comatose, has been in a Los Angeles hospital for four years. Nearby lies Andy, 26, who suffered irreversible brain damage 10 years ago.

Andy is my son.

Since Jan. 20, 1980, when he lapsed into a coma, this once bright, clever boy has been in the same facility with no improvement. A respirator breathes for him. A feeding tube nourishes him.

He is paralyzed, cannot communicate and does not respond to commands. He will never leave the hospital. He will linger there until he dies. His life could end at any time. Or, he could live for half a century.

Andy is one of the 10,000 lost souls in America. They are comatose or brain-damaged. They remain in persistent vegetative states. Modern medical technology can keep them alive indefinitely, caged within their withering bodies.

Many of them have loved ones who hover at their bedsides: heartbroken mothers, fathers, sons or daughters. They search for recognition from eyes that stare into space. They yearn to hear words from muted mouths. They pray for miracles. And when the years come and go with no signs of change or recovery, they begin to pray for death.

The parents of 32-year-old Nancy Cruzan went all the way to the U.S. Supreme Court to plead for an end to their daughter’s life.

On June 25, the court ruled that Cruzan’s parents have no constitutional right to allow their daughter to die. If the patient cannot speak for herself, the court ruled, it is up to the family to prove by “clear and convincing” evidence that she would choose to die.

The word choice has been so much in the news of late. But should not there be a choice for parents, who have given life to a child, when that life has become a living death? Watching a child live without hope is to watch a child die without death. For families, the perpetual grief means living on the brink of interminable hell.

I have lived on the edge of that precipice, never knowing from day to night, or week to month, or month to year, how much longer my son would survive.

I would like to believe that he is aware of my presence when I see him, that he feels my love. It is possible--no, probable--that he does not have the remotest idea who I am. Mine may be just another in the sea of faces that has fluttered past him in a decade of hospitalization.

According to neurologists, Andy’s mental age is that of an infant. We have all seen infants smile. Andy smiles, too. There are times, having seen that smile, that I am lulled into a fantasy: He knows me. He feels well. He is blissful.

When I am not with him, he is always on my mind and I choose to think of his smiles. They so fill me with joy that they become more vivid to me than the other faces that he wears: his vacant stares; the contortions when he struggles for breath; his occasional tears.

Sometimes I can’t wait to see him. Sometimes I must force myself to see him. Sometimes I am grateful that he is alive, so that I can touch him and see that fleeting smile. Sometimes I feel that I cannot endure one more second of the horror, and I wish it would end.

Andy’s life is not productive at all. His care is costly, requiring around-the-clock attention from nurses who must turn him every two hours, check his vital signs, bathe him and feed him liquid food via a gastrointestinal tube. Respiratory therapists must periodically check the ventilator that feeds him oxygen. Doctors see him on daily rounds. This young man is now totally dependent.

Although I am exempt from paying the exorbitant medical bills, I have paid in other ways.

I understand how soldiers in combat become shellshocked. I experience mental exhaustion, anxiety, frustration, anger, and--still, after 10 years--grief.

My health has declined. My career has deteriorated.

I often feel apprehensive. I still fight for sleep. I am shocked into fear when the phone rings too early or too late. Is this the dreaded call to tell me that Andy is gone?

Yes, I have tried therapy. Two well-meaning psychologists advised me to think of Andy as being dead. How can I tell myself that he is dead? He is alive. I know. I see him almost every day. I call the hospital twice a day.

All of the stress and trauma have probably shortened my life, and I worry about dying before Andy. As I grow older, I begin to face my own mortality. If I should die, who will worry about Andy, check on his condition, see to it that he seems comfortable? Who will bury him?

Nobody visits him but me and my 87-year-old mother. I have two older sons. They grieve and cannot bear to see him, to see what he has become. I do not press the issue.

Would Andy have chosen to die on that day in January, 10 years ago? Yes, I believe he would.

In the 16 years before his coma, he already had suffered more than most people do in a lifetime. He was disabled, unable to walk for the greater part of his childhood and adolescence. He had a form of muscular dystrophy and underwent six surgeries to repair the bones and tendons of his feet.

He was a good-humored child, but he longed for a normal life. He wanted to be a radio sports commentator and even wished to have a wife and children one day.

By the time he entered the hospital for treatment of severe pneumonia, however, he was weary. When, that first night in intensive care, doctors offered little hope that he would survive, he said, “Mom, I’m sorry to do this to you.” How like him to worry more about me than about himself.

I said, “Don’t worry about me. You’re going to be fine.”

He shook his head and said, “No.”

Somehow he knew.

If I were sure, if I had any reason to believe that Andy’s existence is unbearable, then I would move heaven and earth to seek an end for him.

I write these words at the risk of sounding sorry for myself. Yes, I do feel sorry for myself, sorry that I will never see my son lead a normal life. I feel sorry for Andy, for the very short time he had.

I also feel sorry for the 10,000 who are brain damaged and comatose, for the loss of their lives.

These hapless souls who are in vegetative states may have pain but cannot cry out. If they have needs, they are unrealized. If they yearn for death, they are doomed to life.

If we heard that an innocent person had been incarcerated unjustly for many years, there would be a hue and cry from the public. Yet, here are people, like Andy, innocent and imprisoned for an undetermined time.

I always said that I would never agree to disconnect Andy’s life support. I am, first of all, a mother who needs to protect her young, who will not give up her beloved child.

But as each year brings me closer to my own inevitable death, I wonder what would be best for Andy?

If ever I should bring myself to the point where I might find the strength to choose to say goodby to Andy, to terminate his life, the law would step in. A mother gives her child life; she may not give him death.

The Constitution guarantees each of us the freedom from bodily invasion and the right to privacy. We should also be guaranteed the right to die.

Now that the Supreme Court has decided that a bereaved family does not have the right to choose death for a loved one, then there is no end to this story. . . .