Theresa Schiavo didn’t have a written living will. She didn’t specify in writing what her wishes were, so we had to rely on oral statements.
—GEORGE FELOS, ATTORNEY FOR MICHAEL SCHIAVO1
I n the predawn hours of February 25, 1990, twenty-six-year-old Terri Schiavo collapsed while home alone with her husband. Deprived of oxygen for several minutes, Terri was rendered a brain-injured woman and later was diagnosed as being in a persistent vegetative state (known as PVS). More than fifteen years later the cause of her trauma remains unknown.
On many occasions, through watching news reports as a concerned citizen, before I even knew the Schindlers or their daughter, I had heard various descriptions of Terri and her condition.
However, some things defy description.
Take the Grand Canyon. There are simply no words, pictures, or movies that can capture the magnitude of this 277-mile long, five-thousand-foot-deep breach in the earth’s crust. A postcard from the gift shop will never take your breath away. But to linger at the edge of the Grand Canyon’s North Rim—there’s nothing like it. It’s life changing.
How about gazing upward at the impossibly massive arms of a six- hundred-year-old California Redwood . . . or swimming with the dolphins in the Florida Keys . . . or bringing a newborn baby home from the hospital? To comprehend and appreciate these things, you just have to experience them for yourself. Nothing else will do.
Here’s the connection to Terri Schiavo.
As an eyewitness, I can attest that there was a tremendous volume of misinformation circulated by some in the media about Terri. While many in the media genuinely understood and sympathized with Terri’s fight for life, in general, the American public was—and continues to be—misled as to the true nature of Terri’s medical condition prior to her death. Why? I particularly fault many in the mainstream press for their lack of due diligence. Rather than digging deep to authenticate her status—rather than pushing to see Terri for themselves—most chose to rehash secondhand, unverified information.
Published reports said Terri was ‘‘in a coma’’ . . . she was on ‘‘life support’’ . . . she was a ‘‘vegetable’’ . . . she was ‘‘brain-dead’’ . . . she was ‘‘unresponsive’’ . . . she was on ‘‘the verge of death’’ . . . she needed a ‘‘respirator to breathe.’’ What’s more, virtually every statement by Michael Schiavo and his attorney George Felos reinforced these descriptions that we found—as you’ll see—to be completely false.
I am convinced Terri’s life never would have been snuffed out if what I saw with my own eyes had been reported by more of those in the press. Granted, the short visitor list enforced by Michael Schiavo and the court restricted access to Terri. That would be an obstacle for the press, no question. But they should have gone deeper, pushed harder.
In this case the public was often misled to arrive at some erroneous conclusions. Probably like you, I had initially carried with me a number of wrong assumptions based on what was available through the media.
When I went to see Terri for the first time in late 2004, I didn’t really know what to expect. Was she pale? Was she stretched out in a bed, immobile, a living corpse? Would she respond to me? Would she even know I was there? Or, as some had suggested, were her parents the problem? Were the Schindlers delusional and unwilling to acknowledge that Terri was, in fact, comatose? I decided to prepare myself for the possibility that the Schindlers may have loved their daughter so much that they were imagining signs of vitality.
But Terri was not terminal—or comatose.
Not even close.
INSIDE WOODSIDE HOSPICE
As I will relate in the next chapter, I became involved with the Schindlers’ case to save Terri in October 2003, but it was not until September 2004 that the Gibbs Law Firm officially became lead counsel for the family. Then it took another few months before I was added to Terri’s official visitors list by Michael Schiavo, her court-appointed guardian.
On Christmas Eve, 2004, my legal colleague Barbara Weller and I traveled with Bob and Mary Schindler the short distance from our office to the hospice. Woodside Hospice is a sprawling, seventy-two-bed, one-story red brick complex nestled in the shadows of groomed hedges, flowering fuchsia bushes, and tall trees. Hand-painted birdhouses and wrought-iron benches accent the winding walking trails, creating an otherwise tranquil setting for the patients.
To be candid, I fully expected Terri to be hooked up to a battery of tubes and monitors necessary to keep her alive. I’ve been in intensive care situations; I’ve known people who were teetering on the brink of death. Like the rest of the country (and the world), my mental picture had been shaped by the press, so I envisioned Terri in some kind of medically severe situation—you know, like an episode from a prime-time hospital drama with a doctor barking out orders to the nurses.
I was sorely mistaken. In fact, I was in for the shock of my life.
When we entered her room, I found Terri sitting in a recliner with a holiday blanket draped across her lap. She was dressed and washed, and her hair had been brushed. By all outward appearances, she could have been waiting for the morning paper to be delivered or her favorite radio program to begin. I almost gawked at the scene: Absolutely nothing was hooked up to her. No IV drip. No monitors. No ventilator. There was no indication whatsoever of any form of artificial life support in use. Even the feeding tube was unattached to the port in Terri’s stomach since it wasn’t lunchtime.
During our forty-five minute initial visit, it was clear Terri understood who the different people were in the room. Hands down, Mary was Terri’s favorite. I’m convinced there’s a bond between a mother and a child that is established at birth, one that lasts a lifetime. And in Terri’s situation, even as a forty-one-year-old woman, I believe some of her strength and her will to live was derived from that mother-daughter bond. To watch the two of them interact was nothing short of incredible.
At the sound of her mother’s voice, Terri squealed with delight, filling the air with a host of happy sounds. She had this excited animation about her that was part giggle and part sheer joy. In fact, Terri could move, and she almost jumped out of the chair. She was clearly animated and responsive, and very much alive. I was wishing some reporters could have been present to record the events of that day. If even one minute of this interchange had been seen by the public, there is no way Terri would have died. I saw an unmistakable inner light radiating from Terri as she and her mother ‘‘loved on’’ each other. I am told by neurologists that people in PVS do not react to external stimuli in a purposeful manner with such human emotion.
Mary was the first one to hug Terri. She cradled Terri’s face with her hands. With soft, slow strokes, Mary caressed Terri on the cheek. She kissed her daughter, and much to my surprise, Terri attempted to offer a sloppy kiss back. Now, Terri never could maneuver her lips completely, but she did her best to return the affection. Between kisses Mary said, ‘‘Merry Christmas, sweetheart. We’re here to visit.’’
Then it was Bob’s turn to greet his daughter.
Interestingly, Terri responded very differently to her dad. Bob had developed this playful routine he’d go through with her each time they were together. I watched Bob announce, ‘‘Here comes the hug’’ as he wrapped her in a bearlike embrace. Then Bob said, ‘‘You know what’s coming next—the kiss!’’ He moved in close for a smooch. Keep in mind that Bob sports a scratchy mustache. His chin was often unshaved too, which caused his facial hair to tickle Terri’s face.
Over the years, as she did during our visit, Terri would scrunch up her whole face in preparation for the assault on her cheeks that she knew was coming with Bob’s scratchy kiss. Her family called this Terri’s ‘‘lemon face.’’ With a giggle, she’d turn her head away as if toying with her dad. In the end, she’d laugh as his lips made contact with her cheek. She responded the exact same way every time to her father’s auditory cues as he consistently initiated this playful routine.
After his kiss Mary said, ‘‘Terri, I brought with us some new friends I want you to meet. This is Mr. Gibbs. He’s an attorney who is helping us help you.’’
After Mary’s brief introduction, I said, ‘‘Hi, Terri. It’s so good to meet you. Merry Christmas!’’ An interesting thing happened as I spoke. Terri’s eyes widened like saucers as if to say, ‘‘What’s that new sound I hear?’’ I confess I have a very deep, resonant voice. Terri obviously picked up on it. Even though I was quickly convinced Terri could understand much more than the outside world had been led to believe, I decided to keep my interaction with her very simple.
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.
| KING: | Did she ever speak since 1990? |
| SCHIAVO: | Terri never has spoken a word.2 |
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.