Terri was sitting in her lounge chair and her aunt3 was sitting at the foot of the chair. I stood up and leaned over Terri. I took her arms in both of my hands. I said to her, “Terri, if you could only say, ‘I want to live,’ this whole thing would be over today.” I begged her to try very hard to say, “I want to live.” To my enormous shock and surprise, Terri’s eyes opened wide, she looked at me square in the face, and with a look of great concentration, she said, “Ahhhhhh.”
Then, seeming to summon up all the strength she had, she virtually screamed, “Waaaaaaaa.” She yelled so loudly that Michael Vitadamo, Terri’s sister Suzanne’s husband, and the female police officer who were standing together outside Terri’s door clearly heard her. At that point, Terri had a look of anguish on her face that I had never seen before and she seemed to be struggling hard but was unable to complete the sentence. She became very frustrated and began to cry. I was horrified that I was causing Terri so much anguish. Suzanne and I began to stroke Terri’s face and hair to comfort her. I told Terri I was very sorry. It had not been my intention to upset her so much. Suzanne and I assured Terri that her efforts were much appreciated and that she did not need to say anything more. I promised Terri I would tell the world that she had tried to say, “I want to live.”
Almost immediately, doctors began to refute the press analysis of the report. Thomas W. Hejkal, MD, PhD, Associate Professor, Department of Ophthalmology at the Nebraska Medical Center, said that although the autopsy findings certainly indicated that Terri had some deficit in her visual field, “cortical blindness could only be diagnosed by assessing her visual function while she was living.” Dr. Bernadine Healy, a former director of the National Institutes of Health, pointed out that an autopsy can tell us nothing about Terri’s neurological function. Dr. Michael DeGeorgia, head of the neurology/neurosurgery intensive-care unit at the Cleveland Clinic Foundation, said that the PVS diagnosis “cannot be confirmed by surgery.” Dr. Mack Jones, a Florida neurologist, noted that while there was evidence of severe brain injury, “these findings nor any other findings have no bearing on the diagnosis of ‘minimal consciousness’ or PVS.” Dr. William Cheshire, the neurologist from the Mayo Clinic, agreed with our position that Terri was awake, aware, and at least minimally cognitive, and quickly made his opinion known to Governor Bush. And Harvard neuropathologist E. Tessa Hedley White said that a pathologic examination of the brain “can’t tell if there is a persistent vegetative state or not.”
Even Dr. Thogmartin wrote that “PVS is a clinical diagnosis arrived at through physical examination of living patients. By definition, an autopsy is performed after a patient dies.” As Diana Lynne points out in her excellent book, Terri’s Story, Dr. Stephen Nelson, a consulting pathologist, who helped Thogmartin with the autopsy report, admitted that while Terri’s symptoms were consistent with PVS, he could not rule out the possibility that Terri was in a minimally conscious state. And Thogmartin conceded that it couldn’t be determined how much Terri’s long period of dehydration contributed to the shrinkage of her brain.
“Mrs. Schiavo’s heart was anatomically normal without any areas of recent or remote myocardial infarction,” Dr. Thogmartin noted. “An underlying, undiagnosed cardiac anomaly is possible, but diagnostics at the time [the time of her collapse] along with postmortem examination of the heart were negative.”
Translation: a heart attack wasn’t the cause of Terri’s collapse.
Nor was bulimia nervosa. “According to those that knew Mrs. Schiavo,” Dr. Thogmartin wrote, “her eating and drinking habits included eating lots of salads, eating a large omelet on weekends and drinking large amounts of ice tea. No one observed Mrs. Schiavo taking diet pills, binging and purging or consuming laxatives, and she apparently never confessed to her family or friends about having an eating disorder. Recent interviews with family members, physicians, and coworkers revealed no additional information supporting the diagnosis of bulimia nervosa and, indeed, other signs and symptoms of bulimia nervosa were not reported to be present.”
The main argument for bulimia that Michael Schiavo’s lawyers used when he sued her ob-gyn and family doctor for malpractice in 1992, was knocked down by Dr. Thogmartin’s findings:
On February 25, 1990, according to available records, a 911 call was made at approximately 0540 hrs.4 Both Mr. Schiavo and Bobby Schindler were present prior to arrival of emergency responders. They both describe her as lying prone and breathing, or at least they describe her as “making gurgling noises.” According to her medical records, paramedics began treating Mrs. Schiavo at 0552 hrs. The Pinellas County EMS report records her as supine in the hallway with no respiration and her initial cardiac rhythm was ventricular fibrillation . . . Her time of arrival at Humana Hospital-Northside was 0646 hrs. At 0701 hrs, her blood was drawn and that sample showed hypokalemia [low potassium] . . . one hour after her initial collapse and after over 30 minutes of CPR . . . Her doctors began potassium supplementation almost immediately resulting in a rapid rise of her potassium . . . She also received epinephrine [from the EMS] . . . The dosage of epinephrine she received was sufficient to cause . . . lowering of potassium . . . Thus it is reasonable to conclude that Mrs. Schiavo’s level . . . measured after a period of ventricular fibrillation, epinephrine, and fluid administration was an unreliable measure of her pre-arrest potassium level. Thus, the main piece of evidence supporting a diagnosis of bulimia nervosa is suspect.
It is unlikely that Michael will repay the doctors the money he won from them in the malpractice suit.
We knew that Terri was visually impaired, but our attorneys and other witnesses, like Father Pavone, saw her recognize us until near the end. My guess is that severe dehydration caused her blindness, as it caused the shrinkage of her brain. Another reason why starvation and dehydration are such cruel means for ending a life.
As for her inability to swallow, this seems true at the time of her death, but not necessarily during the course of her life. Swallowing can be helped by rehabilitation. So can movement, cognizance, speech. Our great bitterness throughout these thirteen years was that Michael stopped rehabilitation when it could so easily have been granted. The autopsy report brought home the full extent of how far Terri had disintegrated. But she had not disappeared, had years of life ahead of her. She had our love and her God on her side. We would have kept her safe.
Shortly after the autopsy report was released, Father Pavone put it in its spiritual perspective:
The autopsy goes on to say that Terri’s brain was “profoundly atrophied” and only half the normal size. Fine. If that’s what the experts tell us, there is no problem believing them. But what does that mean, that she was only half human, only half a person, or that she had only half the rights the rest of us have? That is the conclusion we must never accept. That is a conclusion that does not come from autopsy but from a callous disregard for human life.
Terri did not die from atrophy of the brain. She died from atrophy of compassion. Too many people, starting with Michael, were unwilling to accept the fact that profoundly injured people require profound compassion and care. Even if the autopsy report showed that Terri was ten times more damaged than she was, our moral obligation to respect and protect her life would not change at all. We don’t have to pass a test to qualify for our human rights. An autopsy is a measure of physical damage, not of human rights.
The autopsy says Terri was blind. That is not the morally relevant point. The point is that we are blind—blind too often to the fact that even the disabled and the severely injured have the same dignity and worth as the rest of us, and show forth the image and glory of God even in their brokenness.
And oh, if Michael had only let us rehabilitate her! I grieve now less for her death than for how far she might have come.
CHAPTER 24
Terri’s Legacy
Through Terri’s death, we’ve learned the value of life. Not only the life that most of us enjoy—bodies healthy, minds alert, the capacity to love intact, abl
e to reach out to our neighbors and our God—but the life that was Terri’s: limited, disabled, precarious, confined to a bed or a wheelchair, unable to eat by herself, dress herself, speak for herself, yet limitlessly precious. Injury or disability does not mitigate a human being’s capacity to love or to receive love. Mother Teresa said, “We are made to love and be loved.”
All life is sacred. This is a seemingly simple concept. It’s the basic moral underpinning of most religions. Bob and I were brought up on the idea, and we passed it on to our children. Until Terri’s collapse, we didn’t think much about it; it was a given. But since Terri fell, we think about it every day—what it really means, and why it is fundamental to how we live out each day.
“I think that as a nation, a society, we’ve lost sight of the value of all human life,” Bobby says. “And now we’re deciding who should live and who should die, based on their disability and, in Terri’s case, depending on how profoundly brain-injured they are. We look at people like Terri as nonpersons, as having less value, less worth, than so-called normal people.
“It’s relatively simple now to kill someone based on two criteria: Is the person PVS? Is it the person’s wish that he or she die? Our laws—and they’re only two decades old—make taking a life like Terri’s easy. One of the goals of the Terri Schindler Schiavo Foundation is to make sure we elect legislators and judges who will change the laws to give protection to the disabled and vulnerable. Another is to help the disabled directly, both through counseling and through active intervention. We’ve already been successful in preventing the premature death of a few individuals, who are now recovering! People contact us daily, and we give them suggestions: the names of lawyers in their community who will fight to keep their loved ones alive; the lessons we learned in fighting for Terri. We’ve had attorneys from around the country willing to donate their time and their skill. Doctors and therapists from around the country have volunteered. The response has been overwhelming. Groups in America, Germany, Ireland, and New Zealand have invited us to speak on right-to-life and disability issues.
“It all makes us believe that the foundation is a worthy endeavor. What we are doing is right. It’s what Terri would have expected of us.”
Here Bobby speaks for all of us:
“People have to make the distinction between what’s legal and what’s moral. Just because we’re legally allowed to starve someone to death doesn’t make it morally right. It’s basic to our religion that taking any innocent life is wrong, and the foundation is established in Terri’s name to help prevent this from happening to anyone else.
“We need to be clear that this isn’t about so-called end-of-life issues. What we’re talking about is the intentional killing of innocent, vulnerable people who can’t speak for themselves and have been labeled as ‘unworthy of life’ or who are deemed ‘unwanted.’
“There is not now and never has been a ‘right’ to die. There is no ‘right’ to suicide. This is because there is no right to absolute personal autonomy. We have obligations to each other and to God. And no one can claim for themselves a ‘right’ to deny the value or worth of another human being’s life. We all have a right to life, and it is given by God. It is a gift.”
“I think Terri was selected by God as a messenger,” Bob says. “What happened to Terri is happening throughout the country and in different parts of the world. I came to grips with it at a point just before her feeding tube was removed for the last time. There was nothing we could do any longer, I realized. We had the best attorneys, the support of millions, media attention for Terri’s cause. And we got absolutely nowhere.
“That’s when I turned to God. I said, ‘Okay, if You’re going to allow Terri to die, and it’s pretty obvious to me that You are, then You want to use Terri to get the word out, as a messenger.’ That’s how I viewed it.
“And, even after death, Terri’s done God’s work and continues to do it. Thousands of people drew up wills to live—wills that said they wanted to live—because of Terri. Thousands of people realized they’re mortal or in danger of sudden disability, and they’ve made preparations. Thousands of people realized that the judicial system thinks of killing people like Terri as justifiable homicide. Thousands of people now know about futile care committees, the bias against the severely disabled by the medical and insurance companies, or if they don’t, our goal is to let them know.
“A major objective of the foundation is to establish task forces throughout the country, so that when there’s a patient like Terri, or a hospital says, ‘We’re going to have to disconnect,’ or they recommend the taking of a loved one’s life, there will be someone on hand to advise the caregiver.
“Life support’s not just about respirators and other machinery. It’s about spiritual support, and it means fighting back against doctors and hospitals who say—as a doctor did about my mother—‘She’s led a good life. Let her go.’”
Bobby, too, has a long-range goal.
“I’d love to open up a Terry Schindler Schiavo care center. Where people could bring someone like Terri and not have to worry about their lives being in jeopardy. A safe haven, fully staffed, where the patients are treated like human beings. And if that works, we could establish havens across the country—in every state in the land.”
I hear these plans, and they fill me with hope. Bobby is a changed person. He tells me he wakes up every morning with a sense of purpose and excitement, a feeling that he is doing God’s work—and Terri’s.
“I’ve never been so passionate about what I’m doing in life,” he says. “I feel like I’m trying to make a difference in our world. I think Terri has blazed a way for us.
“We deal with life and death every day at the foundation. Everything starts with life and death. And we’re out there on the front lines trying to do something to help people. All this came from Terri. And, God willing, I hope I can do this the rest of my life.
“They talked about Terri having no value in our society, that she should be dead because she has no worth. But look what she’s done! She’s touched millions of people around the world. Christ works through the most vulnerable and the most sick. And I think this is a perfect example of Him using Terri—being the most vulnerable and sick—and how she’s been able to change the world from a position of complete vulnerability. As evil as her killing was, we can also look at the good that’s eventually going to come from it.”
Suzanne, like Bobby, is tirelessly going around the country speaking on right-to-life and disability rights issues and telling Terri’s story with a compassion that seems to draw her audiences in. Her priority, though, is her daughter, Alex. Suzanne was shunned by her parish after Terri’s feeding tube was removed, and not once did Alex’s priest talk to Alex or to Suzanne. The only time anyone made an effort to help Alex was when she had a breakdown in class, and her guidance counselor took her to church to light a candle for Terri. Alex is now in sixth grade and thriving. Sometimes Suzanne brings her to the office after school, and her presence is sunlight.
Bob remains my strength, my mainstay. He is deeply involved in the day-to-day operation of the foundation, travels across the country to give talks about Terri and the judicial system he believes failed her, and continues to search for the facts surrounding Terri’s collapse. I worry that he works too hard, but when he’s teasing Bobby or Suzanne, I see in him the young father of our children, and my worry eases.
As for me, I am holding true to my promise to try to make sure that what happened to Terri will never happen again. The foundation is my best tool. I’m in the office every day that I’m not out on speaking engagements, answering e-mails from those seeking advice, trying to comfort and console, giving, as best I can, practical and spiritual help. I am more committed to my work than any I’ve done in the past. My days are full and rewarding, my family is around me, and Terri’s spirit is in everything I do.
Terri, I realize, has drawn us together as a family. We are united in our work. We are united in our l
ove.
When somebody you love dies, you don’t get over it. People tell me you get used to it. As the years go by, you don’t miss your loved one as acutely, and the pain recedes. As I write this, it’s been less than a year since Terri died, so the pain is still raw. It is for all of us. I don’t know what I’ll be feeling in five years or ten. Right now I feel that there’ll never be closure (hateful word!) and I’ll never get over Terri’s death.
When someone dies, it’s usually from age or sickness or a sudden, terrible accident. Terri’s death was different. Terri didn’t have to die, yet she died a horrible, horrible death—I can’t get the images out of my mind. She was being killed over the course of thirteen years, beginning when Michael denied her rehabilitation and ending when the courts pulled out her feeding tube. We watched her needless degeneration, as others watch the ravages of old age or a slow but inevitable cancer. But Terri was young and didn’t have cancer. We were forced to watch her being murdered.
“How does a parent ever get over something like that?” Suzanne, herself a parent, asks. “When I look at Mom and Dad, I see Laci Peterson’s mother and know how she felt. At least with her, she didn’t have to watch it happen. Scott Peterson is on death row, which has to bring some sense of justice to Laci’s parents. Maybe they can sleep a little better. But Terri’s murderers are free. For thirteen years, we watched her being killed and were ultimately powerless to stop it despite the strongest allies imaginable.
“I’m fortunate because my daughter, Alex, is a gem. I want to be an example of happiness for her, and I want her to be happy, although realistic, too. She knows what happened to Terri and experienced the pain as well. But I don’t want her to dwell on it. I want her to have some sense of normalcy. And I don’t want to walk around miserable and depressed because of it. I don’t think Terri would want that. Our lives are so short.
A Life That Matters Page 20