Fighting for Dear Life (31 page)

‘‘Hi, Dad. I love you.''

Sarah's next goal? She wants to relearn how to walk.

Sarah's inexplicable emergence from a cocoonlike trance contained another surprise for neurologists: She knew much more about cultural and world events during her ‘‘absence'' than they ever could have imagined. Sarah knew lyrics from popular songs and was able to describe the significance of 9/11 among other events.

Her father asked, ‘‘Sarah, what's 9/11?''

Sarah answered, ‘‘Bad . . . Fire . . . Airplanes . . . Building. Hurt people.''
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You can imagine the geyser of hope that erupted in the hearts of Bob and Mary Schindler as they watched Sarah's recovery unfold. After all, Sarah started speaking six weeks before Terri was to die.

RECOVERY IN ROME

Stories of unexplainable recoveries are not limited to America. While I was writing this book, thirty-eight-year-old Salvatore Crisafulli of Catania, Sicily, awoke after two years in what Italian doctors called a deep coma. The father of four had been hit by a van in 2003. According to one Italian paper, after the accident his doctors considered Salvatore nothing more than a piece of meat formed in the shape of a person on a bed. They asserted that he was unconscious and wrote him off as being virtually dead.

But on July 15, 2005, Salvatore began to regain consciousness. His first word was ‘‘momma.'' In a rather short period of time and with some effort, Salvatore spoke in complete sentences. He proceeded to tell the press he heard and saw everything: ‘‘The doctors said that I wasn't conscious, but I understood everything and I cried in desperation''
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to be heard.

Pietro Crisafulli, who had defended and helped administer the ongoing care of his brother Salvatore, said, ‘‘And to think that some doctors said that it was all useless and that he would be dead in three, four months.''
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Salvatore's recovery came at a time when Italy's National Bioethics Committee (NBC) was wrestling with the question of whether or not to remove artificial feeding and hydration. Unlike what the Florida legislature permitted American courts to decide in the Schiavo case— namely, to starve a disabled woman to death—the NBC overwhelmingly voted to maintain food and water for unconscious patients, including those in a PVS or coma.

What's more, the NBC authorized the feeding and hydration of patients even when such nutrition wasn't desired or requested. Dr. Claudia Navarini, an Italian bioethics professor, explains why the committee arrived at such a conclusion. Her insights are profound:

Whenever hope for recovery is really vain, the fundamental and inescapable truth remains that a man's life—no matter how sick or disabled, or how precarious his state is—always has immense value, before which man's dominating will must halt.

In the U.S. the whole debate was reduced to the question whether Terri wanted or did not want to die. But here, the NBC stresses, it is a decision for life or for death. Not even if the patient requests it are we authorized to suspend feeding and hydration, because the intrinsic value of human life also exceeds the value attributed to it by the individual. In other words, we are not the owners of our life.
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I couldn't agree more.

Besides, we never know when God will decide to baffle us with yet another example of His healing power, nor do we comprehend the mind-boggling ability of our body to recuperate from an extreme injury. Dr. Mark Ragucci's story is a perfect case in point.

WONDERS NEVER CEASE

At thirty-one, Dr. Mark Ragucci had just begun his medical practice when, on December 3, 2001, he experienced an aneurysm in his aorta. With strokes occurring in both sides of his brain, Dr. Ragucci's heart stopped beating. Twenty-four minutes passed without the oxygen-enriched, life-giving blood flowing to his brain.

Dr. Stephan Mayer at Columbia University's medical center worked aggressively with a team of doctors to spare Dr. Ragucci's life based upon his advance written directives. In spite of their valiant efforts, Dr. Ragucci was given no chance of recovering from the cardiac and circulatory arrest, seizures, and paralysis. Dr. Mayer had to break the news to the family that Dr. Ragucci was not going to recover.

‘‘I had no expectation at all that we could help,'' Dr. Mayer said. Why? Based upon past experience working with other coma patients similar to Dr. Ragucci, ‘‘maybe 5% of such patients could follow commands after one year.''
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And though Dr. Ragucci survived the initial round of urgent care, five weeks later he remained unaware and in a coma with no hope of improvement. His wife and family decided to move him to New York University's Rusk Institute of Rehabilitation Medicine.

As far as Dr. Mayer was concerned, the case was closed.

Medically speaking, he was out of options.

He would never see that patient again.

One year later, Dr. Mayer was working in his office at Columbia's medical center when a visitor knocked on the door. Nothing could prepare him for the arrival of his guest: Dr. Mark Ragucci shook his hand and formally introduced himself. Dr. Mayer vividly recalled the moment. ‘‘When he walked in, I almost fell over. It was at that point I realized that we knew absolutely nothing about the recuperative power of the brain.''
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Upon further reflection, Dr. Mayer said, ‘‘Mark's great recovery reflects the brain's innate resilience and ability to recover, which I believe has been vastly underestimated to date. It has been underestimated because we never saw any long-term outcomes, because we have always let them die assuming the outcome would be terrible.''
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Speaking of ‘‘outcomes,'' here's one for the books. Dr. Ragucci returned to his job as a rehabilitation physician at Bellevue Hospital Center and NYU—the very rehab center that had served him as a patient. Like the six fellow survivors mentioned above, Dr. Ragucci has a firsthand appreciation for the wonder, discovery, healing, joy, and purpose that each day holds.

Did you notice the common threads that weave these stories together?

• patients who suffered from a severe brain injury with the dire prognosis of no recovery

• a family who refused to give up caring for and loving one of their own

• a comatose or PVS patient learning to swallow, eat, and speak once again

• gratefulness for a second chance at life

It is true that these and other similar accounts are not as numerous as we would like. Perhaps this is because, as Dr. Mayer stated, we have let the brain-injured die rather than give them the opportunity to live— or as was the case with Terri, they are refused the rehabilitation therapy that could lead to marked improvement.

Could Terri have joined the ranks of these miraculous comebacks? Her parents believed she could have if given the chance. Now, they'll never know.

If there's a lesson to be learned from these seven stories, it's the reminder that modern medicine hasn't begun to comprehend the complexities and capabilities of the human body. As King David said in Psalm 139:14, we are ‘‘fearfully and wonderfully made.'' What's more, we were created ‘‘in the image of God.'' That is why life is sacred and every life is precious to God.

Indeed, as the placard affixed to the wall just outside the entrance to Woodside Hospice where Terri lived and died proclaims: Every Day's a Gift.

CHAPTER TWENTY - TWO

THE LEAST OF THESE

When a person's wishes are not documented, we should err on
the side of life; we should assume that living is preferable
over dying . . . the quality of one's life should never be a
criteria to put them to death.

—J
ONI
E
ARECKSON
T
ADA
1

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n interesting by-product of Terri's story has been a national debate between the ‘‘quality of life'' and the ‘‘sanctity of life'' viewpoints. Far too often these discussions have generated more heat than light. Having walked through the Schindlers' struggle to save their daughter, and having a personal family example to draw upon myself, I'd like to weigh in personally on that debate for a moment.

My grandmother was a high-energy, piano-playing, vibrant woman until she contracted polio in the early 1950s. Prior to the development and usage of a vaccine in 1954, polio was the AIDS of the day—only it was more contagious. Polio could be passed through the air, in food, or in water. Given the high risk of infection, her eight-year-old son (my dad) and his younger sister were sent away to live with relatives.

Even though my grandfather was jeopardizing his own health by entering his wife's bedroom where she was confined, he was committed to caring for her. Polio took its course, but it didn't take my grandma's life, at least not at first. As the disease spread, she became paralyzed from the waist down and was restricted to a wheelchair, never to walk again.

You can imagine the devastation a disease like polio wreaked on a family's life. Grandma couldn't cook, shop, clean the house, or care for the kids. This once spirited woman who had served her family steadfastly for years now needed help with crutches and wheelchairs in order to function. She needed assistance bathing, getting dressed, eating, using the bathroom, and many other activities most of us take for granted.

Sadly, the church where they had attended discouraged her from coming to services anymore. Keep in mind that she had been the devoted piano player at this small country church. As faithful members, my grandparents had never missed a Sunday in years. But understandably, the church folks thought they might catch the disease. And while vaccinations were starting to become available, the church community felt it was best not to risk becoming contaminated themselves. Why take the chance of infecting others? Overnight, my grandparents became virtual outcasts in the fullest sense of the word.

Fast-forward a number of years.

My grandfather stayed married and stayed faithful to my grandmother despite her disability and the daily risk it posed to his own health. He sacrificially cared for her every day for forty-five years, and they remained best of friends for the rest of her life. After my grandmother died in 1997, my grandfather continued to proudly wear his wedding ring and talked about his girlfriend waiting for him in heaven.

In late February 2006, my grandfather joined my grandma in heaven; what a sweet reunion that must have been!

What was it about their fifty-three-year marriage that enabled them to stick together? Many turned their backs on them—their friends, their church, and their little slice of society. What's more, my grandpa was a young man when polio crippled his bride. He had a good job in the meat and cattle business. He could have institutionalized her and then moved on to remarry. But he didn't. Why? Evidently, he under- stood that his wedding vows meant something to God.

And as someone who embraced the sanctity of life, he didn't say, ‘‘What's in this relationship for me?'' He resisted the temptation to fret about getting the short end of the stick. Never once did he look for a way to get out of the deal. When he stood at the altar, he made a commitment: ‘‘Till death do us part.'' There was no fine print or exception clause that told him, ‘‘As long as you remain young, healthy, attractive, or even pleasant to be around, I'll stay with you.''

Because he viewed life as a sacred gift from God, my grandfather's marriage became a picture of unconditional love to the generations that followed in our family. I've often reflected on my grandparents' relationship in light of the debate between the quality and the sanctity of life. Let's look at the differences these perspectives present.

QUALITY OF LIFE

If honest, the quality of life position begins and ends with a consideration of ‘‘self.'' If my grandfather was only concerned about himself above the needs of his disabled wife, she would have died a lonely, neglected woman. Instead, something amazing happened: Their relationship deepened in spite of her illness.

You see, the ‘‘quality of life'' person makes the mistake of trying to hold on to a ‘‘normal'' lifestyle. These folks want to experience life pretty much the way they want it to go. If they're able to maintain the status quo, then they'll sign on to care for a disabled spouse or a child. But if the price gets too high, or if dealing with the disabled person becomes too difficult, they're not willing to pay the price. In turn, they miss the blessing that awaits those who are willing to make the sacrifice.

At its core, then, the quality of life perspective is self-oriented: concerned primarily about the price required to maintain a life—a price defined by them as money, time, energy, or inconvenience. In short, a quality of life person wants to know:

What will caring for this person cost me financially?

How much of my time will be involved?

How will this added responsibility affect my level of stress?

Will the government provide aid for me?

Is this whole thing going to fall on my shoulders?

Can I still do the things I enjoy doing?

There's one giant problem here. This line of questioning is not consistent with unconditional love. To be unconditional means to serve another regardless of the price. As my grandfather discovered, there's a reward of unparalleled blessing for those who give of themselves to those who can't give anything back.

Let's go a step further.

If you're a quality of life person and you become disabled, you will also be primarily concerned with yourself. That might sound obvious. Indeed, everyone has a degree of self-interest. What I'm driving at here is that the quality of life position essentially says, I want to live life on my terms. If life isn't going my way or if I can't function the way I used to operate, I'd rather not live. That's the ultimate quality of life statement. Hold on a moment. If life isn't going your way, who gives you the option to choose to end it? Do you have the right to alter what God may want for you? Is it really your choice to short-circuit the impact you might have on your family, friends, and beyond? What gives you or me the right to shrug and say, ‘‘I'm unhappy. I want this to be over.''