Fighting for Dear Life (3 page)

Standing in front of her, I said, ‘‘I want you to know we're gonna fight for you, Terri. We want to get you home for the Fourth of July if we can win this.'' Although she was watching me intently, I couldn't help but wonder,
Is she following any of this? Does she even recognize the fact
that I'm standing right in front of her?

As a test, I decided to walk around her recliner while talking to see if she would follow my booming voice. I'm not a medical doctor. My training is in law. But neurologists have told me that, by definition, vegetative patients are not aware of external stimuli. I was guessing if Terri was truly in a ‘‘persistent vegetative state'' as the press had been told (since they weren't allowed to see for themselves—Michael had forbidden it), she'd be oblivious to my little experiment.

I started to move behind her chair, saying, ‘‘Boy, Terri, won't it be nice to have Thanksgiving at home next year?'' At first Terri's head had been cocked to her left. As I walked around and stood directly behind her, I started talking again. I had just run in our local Thanksgiving race, called the Turkey Trot, and the legal team had been joking about how great it would be to push Terri the three-plus miles in her chair the next year as a sort of victory lap.

‘‘Terri, maybe you and your parents could go to the Turkey Trot and see some of your old friends next Thanksgiving.'' You know what she did? She flipped around trying to follow me. Wherever I would stand and talk, Terri tracked my position. Clearly, she had some degree of comprehension.

Was Terri brain-injured? No question. The injuries she suffered that night in her apartment would be with her for the rest of her life. She was not, however,
brain-dead
. If Terri were truly brain-dead, she would be unresponsive to any stimuli and devoid of all muscle activity. She would not be capable of moving in her chair or even breathing on her own. Was she disabled? No question. We never disputed that. But was she aware of us on some level?

Absolutely.

I retraced my steps and stood in front of this special lady. Terri flipped around again to keep me in view. Just as I was about to share a few more thoughts, Mary astonished me with a little demonstration of her own.

I LOVE YOU

Mary Schindler was a stay-at-home mother. She had no formal college education and certainly no specialized background in speech therapy or training in medical rehabilitation. She did, however, have a mother's love and affection, which ran deep for Terri. Mary drew close to her daughter and started to softly rub her on the cheek.

Mary said, ‘‘Now, Terri, I want you to show Mr. Gibbs some things.'' She continued to stimulate Terri's cheek. After a moment, Mary said, ‘‘Terri, say ‘I.' '' My heart started to pound. Was it possible Terri would respond? In court the ‘‘experts'' had testified that she was unresponsive. I was also aware that back on October 27, 2003, Larry King had asked Michael Schiavo about her ability to speak.

I braced myself. Would this woman, whom the court had ordered to die, begin to respond to basic verbal commands?

Terri obeyed her mom and said, ‘‘Ahhh.''

I thought,
That's not even possible
. According to everything I'd read in the court documents and transcripts, as well as the numerous reports in the press, Terri was not aware of her environment and could not engage in voluntary behavioral responses, even when prompted. Yet here was Terri, verbalizing appropriate and different syllables at her mother's direction.

Mary stroked Terri's cheek some more and then said, ‘‘Good. Now, Terri, say ‘love.' '' Terri got the ‘‘l'' and said, ‘‘Laaa.''

‘‘Terri, say ‘you.' '' We waited, but Terri couldn't get the ‘‘you.''

Apparently certain letters were just too difficult for Terri to form with her mouth—at least without specialized instruction from a speech therapist. With more than a million-dollar malpractice award requested in 1992 for Terri's care and rehab, it was sad that her husband and guardian, Michael Schiavo, was spending that money on lawyers and not on Terri's rehabilitation, including speech therapy.

Undeterred, Mary said, ‘‘Here, let's do this again now.'' With great affection she said to her daughter, ‘‘Okay, Terri. Now come on and say ‘I.' '' ‘‘Ahhh.''

‘‘Say ‘love.' '' ‘‘Laaa.''

‘‘Say ‘you.' '' Terri never managed to get the ‘‘you.'' Over the next ten or twelve minutes, I watched this woman obey her mom repeatedly as they worked on this one basic sentence. Throughout the exchange Terri searched Mary's face with a wonderment as if to say, ‘‘Did I do good?'' As Mary offered affirmation, Terri's face literally shone as she basked in her mom's approval.

I found myself at a loss for words.

Here was a lady who was brain-injured and severely disabled, no question about that. Yet Terri recognized people, enjoyed the company of her family, and struggled to communicate. Interestingly, over the course of my future visits, Terri even warmed up to me. I'd walk in the room and start to talk to her as you would to a young child. She'd respond to my presence and appropriately jabber right back at me in her own way.

The time for our first visit was up.

As we said our good-byes and as her mother rose to leave, a remarkable thing happened: Tears began to roll down Terri's cheeks. I was told that almost every time Mary would visit and start to leave, Terri's great big tears would flow. No wonder the Schindlers thought there was no way the courts would ever buy the notion that Terri had no capacity to feel or that she should be ordered to die.

You might be wondering,
But, David, how can this be? Wasn't she in a
‘‘vegetative state''
?

Be careful when you hear the term ‘‘persistent vegetative state'' (PVS). Don't allow yourself to think that PVS is a formal, fixed-in-stone medical diagnosis. It's not. I've learned that the PVS diagnosis is a gut-level guess at best. One 1996
British Medical Journal
study suggested that doctors misdiagnose PVS approximately 43 percent of the time.
3
Another neurologist told me the number of false positive vegetative diagnoses is higher in patients who are motor or visually impaired. Terri had been visually impaired since childhood and was motor impaired as a result of her collapse in 1990. This neurologist estimated the possibility of a misdiagnosis for Terri at 40 percent. I am also told that patients can transition in and out of PVS over time, so unpredictability is also a factor in a PVS diagnosis.

Are you sitting down?

Dr. Ronald Cranford was one of the neurologists used by Michael Schiavo to certify to the court that Terri was in a persistent vegetative state. Cranford was so confident of his diagnosis that he claimed he was ‘‘105 percent sure'' Terri was PVS. In 1980, however, according to news reports Dr. Cranford made a similar declaration about another one of his patients—Police Sergeant David Mack. David had been shot while serving a warrant.

Cranford told David's relatives, ‘‘Sergeant Mack will never regain cognitive, sapient functioning. He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends.''
4
Relying upon Dr. Cranford's prognosis, Mack's relatives made a life-and-death decision: They pulled the plug on his ventilator.

Guess what? Sergeant Mack didn't die. He continued to breathe and live on his own. Why? Dr. Cranford's unequivocal diagnosis of PVS was totally wrong. In fact, David Mack astonished his family by regaining his consciousness
and
communication skills.

You see, the American Academy of Neurology concedes that the PVS diagnosis is, ‘‘as with all clinical diagnoses in medicine, based on probabilities, not absolutes.''
5
In other words, a PVS diagnosis is merely an educated guess. Even with the amazing advances in medicine, physicians do not fully comprehend how the brain operates.

In fact, medical journals continue to report rapid discoveries and changes in this area, even as recently as during the last twelve months of Terri's life. For example, neurologists are learning that the brain has an ability to almost re-create itself by reconnecting around the parts that have been damaged.

I'll use a computer example to illustrate this breakthrough. When Judge Greer ordered Terri's death back in 2000, the prevailing thought at that time was that the brain was like a computer hard drive. If it's no longer functioning, we have no option but to discard it.

But by 2005 leading doctors and neurologists were saying, in effect, ‘‘No, the brain is not like a hard drive. It's more like the Internet.'' In other words, when a portion of it is injured, the brain can reorganize and reroute itself (called neuronal plasticity) and still do some amazing things. God has designed our bodies and brains to be resilient and reparative in ways we may never fully understand.

By the way, if Dr. Cranford was wrong about David Mack, isn't it possible that he was also wrong about Terri? Tragically, we'll never know for sure. One thing is certain in my view: If the American public had seen Terri with their own eyes like I did, they never would have let her die.

Does that sound like an overstatement?

Let me give you a bit of corroborating evidence from another person who saw Terri that Christmas Eve day in 2004. My associate Barbara Weller admits that, like me, she anticipated seeing a sickly person with an unwholesome, grayish skin coloration. Instead, Barbara found Terri to be ‘‘a very pretty woman with a peaches-and-cream complexion and a lovely smile.'' After our initial visit, Barbara noted in her journal:

I never imagined Terri would be so interactive, curious, and purposeful. I was truly taken aback by her beauty, particularly under the adverse circumstances in which she has found herself for so many years.

You see, for more than a decade Terri had not felt the warmth of the sun against her skin. Fresh air, the song of birds, and the rustling of squirrels scurrying about were simple pleasures she was not permitted to savor. Yet in spite of having existed in a warehouselike solitary confinement for many years, Terri appeared to be in remarkable shape to both Barbara and me.

And, though comfortable, Terri's living space where I visited her was not much wider than the width of two single beds and about as long as the average bedroom. A short hallway branching off the main corridor led to her room. In other words, the floor plan isolated Terri from the general population; Terri couldn't see out and there was no way for others to observe her from the hallway.

When pressed to give Terri some freedom, Michael repeatedly insisted that Terri be kept from mingling with the outside world. He refused to authorize the occasional stroll around the facility or across the parklike hospice grounds in her wheelchair.

Even for Christmas.

ALL I WANT FOR CHRISTMAS

Christmas Eve was always difficult for the Schindlers. They longed to bring Terri home to enjoy the holidays together as a family. Keep in mind there was no medical reason why Terri couldn't travel across town for the afternoon. Granted, the hospice had been tastefully decorated. Several lighted Christmas trees were tucked in various alcoves around the facility. The nurses' station had a splash of colorful lights too.

Terri would have enjoyed seeing those decorations, but as you recall her husband said she wasn't permitted out of her room. The only festive display Terri had was the holiday blanket on her lap and a small plastic tree on her bedside table—a stark contrast to what her family would have prepared had she been allowed home for a few hours.

As Bob shared with me later, he and Mary returned on Christmas day to sit with Terri. A number of carolers strolled through the hallways, stopping in the patients' rooms to spread some Christmas cheer. But when this group of minstrels approached Terri's door, the place went crazy. The nurses—fearful of defying Michael's wishes and concerned about losing their jobs—raced out of the woodwork to make sure no carolers went into Terri's room.

After some debate, a compromise was reached and the carolers were permitted to sing several songs outside Terri's door—and out of her view. Still, Bob reported that Terri was radiant. She obviously enjoyed every minute of that Christmas serenade. Christmas had always been her favorite time of the year. As it turns out, this was to be Terri's last taste of Christmas this side of eternity.

Here's what really bothers me.

The woman I saw was desperately trying to talk. She gave and received love. She exhibited joy and sadness. Like standing on the edge of the Grand Canyon, my life would be forever changed by what I saw. I can understand why people who never met Terri are confused. I wouldn't have believed all this myself if I hadn't seen Terri with my own eyes and personally interacted with her.

However, one judge—who never once saw Terri, who never once laid eyes on her, who never even once had her come to court—made the decision that Terri Schiavo's life didn't matter. Without the benefit of a jury, Judge Greer determined from the bench that Terri was in PVS and didn't have a ‘‘quality of life'' worth living.

Make no mistake: Terri Schiavo was not terminally ill or near death. This case was not an end-of-life decision.

This was a decision to end a life.

As I came to know Bob and Mary Schindler and their lovely daughter Terri, little did I know that my experiences working with them would irrevocably change my life forever.

In the following pages, I will take you on my personal journey working with this remarkable family. I begin one year earlier, in October 2003, the first time my father and I met the Schindlers and heard their amazing story.