Whitley's Journal

The Agony of Terri Schiavo's Family

My wife recently published a diary entry about herviews on the Terri Schiavo case, which elicited a ton of email response. Like my recent journal on the Rapture, or the non-existence thereof, the vast majority of the letters were positive.

We receive ten thousand emails a month, and our volunteers try to at least open all that are not obvious spam, from known lunatics, or have no subject heading. Those all go without being opened.

Over the past years, more and more of your emails have become more clear-headed, rational and, frankly, moderate in tone. At this point, that's what we get most of the time. Often, letters lead to Dreamland or Mysterious Powers programs, news stories, and Insight articles.

The negative emails have also changed. They have become more scatological, shrill and hateful than ever. The days when we received rational arguments against one position or another are almost gone.

One gets the impression that they are screaming because they sense, somehow, that the country is finally turning away from the extreme right just as it has from the extreme left. Quietly, in our hearts, we are beginning to realize where religious and political extremism lead, which is away from our cherished ideals of individual freedom and personal opportunity. Ours is a nation of moderate and tolerant people, and we are at our best when led by the same.

Of the thousand or so emails that came in about the Rapture article, of which 93% were positive, we did receive two really well thought out negative responses. In both cases, we asked if we could publish the responses as Insight articles, but received no reply to our permission requests.

So far, Anne's email on Terri Schiavo is running almost 100% positive, and the few negative have been, with a couple of exceptions, insane or so hysterical as to appear insane.

This gets me to the question of why that would be so. It has to do with what I believe to be the sickest media frenzy I can remember, which is the treatment of the Schiavo case.

The media is driving perfectly normal people into a frenzy over this case, and doing it with calculated purpose, out of greed for advertising dollars.

Again and again, the media plays video of her from years ago that makes it appear as if she has far more function than she does. It creates a heart-rending dichotomy between Terri and the seemingly unfeeling judges who have, time after time, said that the husband is within his legal rights.

But why are all these judges making this decision? In the absence of a living will, the test for removal of life support by a guardian is that the victim is irrevocably unrecoverable according to medical opinion. And one, single doctor is not enough in a disputed case. The medical opinion must be extensive and virtually unanimous.

Instead of telling us the facts that the judges are seeing in court, a false contrast is being drawn between the gently smiling figure in the old videos and a heartless court system that is made to look as if it is utterly indifferent to human life.

This isn't being done because ABC, CNN, Fox and the rest of them hate the courts, or have any feelings at all about Terri Schiavo. They couldn?t care less. It is being done for one simple and very sick reason: to juice ratings by invoking hysteria.

The idea of telling us the facts, whatever they may be, simply never enters into it. Instead, we must get our ?facts? from the extremes: either she is a completely brain dead basket case or she?s conscious and pleading desperately for the return of her feeding tube.

My guess is that neither of these extremes even approach the truth?which is, itself, buried beneath an avalanche of pure media prostitution. I would guess, further that it is a difficult, unsure truth, agonizingly so, and not providing the family any clear answers.

The media don't like unsure. They like a good guy to love and a bad guy to hate, and who cares about reality or that long-dead corpse, media integrity?

The politicians who became involved are not so much to blame. Perhaps it was true that, in this remarkable and terrible case, the federal bench should have been allowed to intervene, despite the disregard for states rights and the constitution that was implicit in the bill that congress passed and the president signed. They were careful to limit the language of the bill to this one case. It was clearly not intended to set a precedent.

In any case, the federal courts were not convinced that even this much of a deviation from established constitutional principles was wise: they upheld the law of the land, which places these disputes firmly in the courts of the states in which they occur.

This gets me to the personal side of the question. And, for me, there is a VERY personal side. Before you come to the conclusion that I am going to take a position about Ms. Schiavo, I am not. In all truth, I do not know what should be done in her case. I just thank the good Lord that this decision has not fallen to me to make.

The reason is that I have, in the past few years, twice had to make similar decisions. In both cases, the victims had living wills, but, believe me, when you are alone with the question of whether or not to pull the plug, there is always an element of doubt, and that is an agonizing place to be.

In the first situation, my sister had experienced a severe stroke and was on a ventilator. She had a living will that stated that, if she was going to be impaired, she did not want to be resuscitated. She had gone into a difficult operation for an aneurysm knowing what the worst might be, and and written her living will out in her own careful handwriting, and signed it.

About five days after her surgery, the doctors told us that there had been massive brain damage. She was being maintained with a ventilator. They said that the odds that she would wake up again were stacked high against her. And if she did, she was liable to be substantially impaired for the rest of her life.

Her poor son could not make the decision. He left it to me. I went in with my sister. I tried various ways of communicating with her, asking for any response of any kind. There was nothing. So I told the doctors that it was time to end her life support, which was the single hardest thing I have ever done in all my days.

This was my sister, who had been the dear friend of my childhood, who had always been there. After the ventilator was removed, her vital signs began to decline. At about three in the morning, the doctors told us that the end was near.

I stayed at her bedside saying the rosary, not for her recovery, I would not presume to do that, but that she gain the peace of God. Her life signs kept declining. Her oxygen uptake reached close to the point of no return. The shadow of death was upon her, truly.

And then I noticed a beeping that seemed to be getting

faster. Soon, her oxygen number read 93. It was not the breathing of somebody who was dying.

She survived, then, and on one level we were filled with joy. But on another, a great terror filled us, unspoken at the time, but central in all of our minds: what if she survived as a vegetable? What would we do then? Or worse, maybe she would be severely impaired but not fall within the legal purview of the living will.

The days and weeks passed. Finally, a month later, she was still not conscious and on a feeding tube. The doctors did not think that she would go beyond this. I got in touch with a hospice, and again prepared myself to make the agonizing decision.

I went into her hospital room. She could not speak. She could not open her eyes. There was just the very slightest indication of consciousness. I spoke to her, though, as if she was there, as if she could hear.

I told her who I was and that I loved her. I told her that the doctors thought she would be severely impaired and reminded her of the instructions she had left us. Through all of this, there was no response, not even the slightest squeeze of my hand.

Then I said, if you want us to remove the feeding tube, you will go to sleep forever. The words were so hard, it was almost impossible to utter them. I am in tears now, just remembering. I said, do you want us to remove the tube?

Nothing. No response. I had read much about strokes. I knew how hard it was for victims to communicate sometimes. I also wanted my sister to be happy, and I knew her living will, at this point, by heart.

I said, would you like the feeding tube to stay in? And, all of a sudden, her face broke out into a huge, sunny smile. Never since her catastrophe had she responded this much to anything.

I then told her all of the things that might be wrong. I told her that the doctors were sure that she had lost her right arm forever. Then I asked her again, do you want the feeding tube removed. Nothing. Shall it stay in? The smile again, and this time I could see in it something that I would call a profound joy of life, that she did not want to give up whatever she still had, that she wanted very much to keep it.

She now lives alone in an apartment with her cats and has a life that is smaller than it should be, but certainly worth living. She has become left handed.

She remembers nothing of what happened during her illness, knows little of what I went through, or what she went through, in those dark, dark days.

Last fall, I found myself facing the most horrendous of all disasters when my dear wife of 30 honeymoon years suddenly collapsed and began to die before my eyes.

At that point, I knew enough about strokes to know that she was having one, and that it was probably, because of the way she was responding, a brain bleed, and that such bleeds, for the most part, are fatal.

We had strolled into our apartment after a happy day with our son and suddenly Anne was dying in my arms.

There began a most extraordinary journey, and the hardest one I have ever known. What was so hard about it, so terribly hard, was not knowing the final outcome. Once she was in hospital and the bleed was stabilized, I was reasonably sure that she would survive.

But in what condition? She, also, has a living will. But living wills do not allow for the killing of the impaired, but only for the withdrawal of life support. I prepared myself to make the decision again, if I had to, to call a halt to medical care for the love of my life. Could I do it? Would I be called upon to? These questions tormented me. What if she was 'locked in,' fully conscious but unable to move a muscle? I would have to make the decision about life support entirely without her help, basing it only on the living will and my knowledge of her.

But what if, locked in there, was a mind that had changed?

If that decision fell to me, I knew that it was going to be extraordinarily hard. I did not know how I would make it. I would trust grace to tell me when and if it happened.

Worse, what if Anne ended up severely impaired but not in need of life support? Nobody wants to live like that. Would she ask me to help her die? How would I react? Should I disobey the law in order to obey the wishes of my beloved wife?

People scream moral guidance at you out of pulpits and books and on the television, but, when you are face to face with these issues, you realize that they're just a bunch of crying babies and vampires. They have nothing, and I mean NOTHING, to give somebody who is in that situation.

It is possible for a human being to be entirely alone with an impossible decision. Not only that, it is a loneliness that will come to many of us, and more in coming years as medicine gives more and more of us the opportunity to make basic life and death decisions about those we love.

When Anne was in the Intensive Care Unit, I spent time with lots of other 'ICU families.' We were like survivors on a life raft, far out to sea. There is nobody, really, who can help you, then. The raw fact is that it is between you, your god if you have one, and your conscience.

I saw one family get the same news about their father that I had gotten about my sister. They stayed at the bedside of a man who had obviously been a vital and beloved center of his family. When the ICU was closed to us families, they sat on the floor outside the door. Were they praying? I have no idea, and it was not my place to ask.

In their hearts, in the spirit, however, their decision was coming to them. Finally, they told the doctors to discontinue. Within an hour, the head of their family had expired.

They left, then, trooping down to the elevator in silence, and the body was quietly rolled away to the basement.

Soon, the ICU was open again. The worst moment, for me, was always the moment of entry. I would immediately survey all of Anne's readouts and see where she was, her oxygen uptake, her EEG, her EKG, fever, all of it.

This time, as I walked past the beds, past one comatose patient after another, I heard music. Anne had a little CD player with a speaker, and we had given her some Glenn Miller CDs. In this room full of the dying and the near dead, here was this one woman, her face covered by an oxygen mask, a breathing tube and a feeding tube in her mouth, tied down so that she would not accidentally rip out an IV, living only because of the array of machines around her, moving the only thing she could--her hands.

She was hand-dancing to her music. From that moment, she has come all the way back, and I have never had to make the decisions that the Schiavo family is facing.

But I know how they feel, the agony of it, and the fact that it has become part of the ghastly pornography of our decadent media makes their suffering even more awful.

I have no idea what the answer is in their case. Not only that, I have no business even inquiring, and neither do any of us. It is a matter so deeply private, it belongs only to the families and, in this tragic situation, the courts.

The rest of us, since we know about the situation, have only one clear responsibility, which is to wish this poor, divided family all best, to pray for them if we do, and to trust what we trust of the human spirit and the hand of God, that peace will somehow prevail in their suffering hearts.

NOTE: This Journal entry, previously published on our old site, will have any links removed.


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