A Life That Matters

by Terri's Family:

  “One of the things that always upset me later was the questions the media asked all the time. ‘What about the breakup? What about the split between the families?’ Through his lawyer George Felos, Michael would say, ‘This wasn’t about rehabilitation and therapy, this was about Mr. Schindler wanting his piece of the pie. He was demanding money from me and I wasn’t going to give in to him.’

  “Okay. Let’s for a moment pretend that Dad was only after the money. That Dad was the worst person in the world. What bearing would it have on Michael’s promise to use the money for rehabilitation and therapy? It doesn’t take away the commitment he made to himself and to the jury—and to our family—that he was going to care for Terri for the rest of his life. And what does it have to do with his petitioning the courts to remove her feeding tube? It’s as though he was saying, the father is a bad guy, therefore I’m going to kill his daughter.”

  That Valentine’s Day was one of our darkest days. It was as though Michael had punched us in the stomach, taken our breath away. I thought of how my brother-in-law had been saved by the very rehabilitation Terri had been refused. She would exist at Sabal Palms nursing home with nothing but the most rudimentary care. No doctor, no therapist, no psychologist, would be allowed to try to make her better.

  My thoughts went back to when she was a little baby and couldn’t speak for herself. But as any mother does, I knew when my baby needed help, and I was always there to ease her pain, mend her cuts and bruises, comfort her when she was sick. Now, though, her husband would not let anyone tell me if she was sick, let alone allow me to tend to her. It was unbearable.

  CHAPTER 7

  Sabal Palms

  Almost immediately—we think it was on Valentine’s Day itself—Michael told the administrators at Sabal Palms not to release any medical information to us without his authority. He also instituted a “do not resuscitate” order.

  On one of my visits to see Terri, she was sitting in the atrium looking pale and uncomfortable.

  A nurse approached. “Gee, she looks kind of funny,” I said.

  “Well, you know, she just got back from the hospital.”

  No one had told us anything about a hospital, but I played along, figuring it was the best way to get information.

  “Yes. But is she getting any better?”

  “Absolutely! Do you remember that they took her gallstones out?”1

  “Of course. It was in the spring.”

  “She’s on antibiotics now,” the nurse went on.

  I thought I must be going mad. “That’s great. What for?”

  “She had a really bad urinary tract infection. But,” she added cheerfully, “the antibiotics will cure it.”

  It was like being hit by lightning when we later found out that in June Terri had another UTI and that Michael had ordered Sabal Palms to refuse her any medication. The action was a potential death sentence. Untreated, the infection—sepsis—would spread throughout Terri’s body and she would die. It is thanks to the people at Sabal Palms, who countermanded Michael’s wishes, that she survived. Without them, she might have died before we even knew she was in danger! The thought terrified me. We resolved to be more vigilant in the future—but how?

  Bob made a direct plea to Michael in a letter:

  July 16, 1993

  Mike

  Long before and during the malpractice trial, you made a number of commitments to Mary and myself. One of your commitments was that award money was to be used to enhance Terri’s medical and neurological care . . .

  Since the trial and the ensuing award, you have chosen to ignore your commitments and have totally removed Terri from our lives. You have not communicated to us anything concerning her medical nor neurological status.

  We want to know what Terri’s latest evaluations are both medically and neurologically. It is very upsetting to be told by her medical attendants that you instructed them to withhold any and all information concerning our daughter’s medical status . . .

  I/we are requesting you to keep us informed, on a weekly basis, of Terri’s condition and progress. Simply drop us a note telling us what is happening. It will only take a few minutes. I am sure we will all sleep more comfortably.

  On a long term basis, I would like you to consider giving Terri back to us, so we can give her the love and care she deserves. Logically and realistically you still have a life ahead of you.

  Give this some thought. Are you ready to dedicate the rest of your life to Terri? We are! Let us know your feelings.

  Mary and Bob Schindler

  There was no reply.

  Imagine what it’s like to have your young and beautiful daughter in a nursing home in the first place. Then imagine that someone is controlling the information—or lack of it—you receive about her condition. Imagine what it’s like to go to sleep (if you can sleep) without knowing whether your daughter is sick, whether there’s been some crisis, whether her condition is stable or deteriorating. And imagine being in this position not just in one specific instance, but for twelve years.

  No, don’t imagine. I don’t wish even the thought of it on anyone else.

  Michael threatened Bob with a lawsuit, demanding return of $650 we “owed” him for household items he had contributed to our Vina del Mar living room. We felt it was a deliberate affront and decided to contest it. We hired a lawyer, Jim Sheehan, to represent us.2 Sheehan was outraged by Michael’s order to deny Terri medication. “This is wrong. He can’t do that,” he said, and promptly went after Michael’s guardianship of Terri. Sabal Palms initially agreed to file a joint suit with us, but later backed off, giving as their excuse that there was so much evidence against Michael that we didn’t need them.3 In Michael’s deposition for the case, responding to the question “Why are you trying to kill her?” he answered, “Because I think it’s what she’d want.”

  I think that’s what she’d want. She had never said it was what she wanted. He was guessing at her wishes, and didn’t state in open court that they were her wishes until 2000, when he was arguing for the removal of Terri’s feeding tube. What she did and didn’t want with regard to her death wasn’t an issue in 1993. He would change his testimony seven years later, when the issue was at the core of our fight, and when it suited him.

  The summer had passed almost without our noticing it. Be- fore Terri’s collapse, these months were a time for vacation, but now vacations of more than a couple of days were impossible. We kept working, occasionally went out to dinner, saw friends. Our world’s boundaries were home and nursing home. Terri was always our primary concern.

  In the fall of 1993, the court appointed an investigator named Novinski to try to determine Michael’s fitness as Terri’s guardian. After an inquiry of several weeks, he concluded Michael should be removed.

  We were jubilant. If Michael were removed, he could no longer single-handedly dictate Terri’s treatment. Judge Thomas Penick, who presided over the hearings, announced that he would appoint a guardian ad litem(an independent, interim guardian) and set a date two weeks later for the court to reconvene.

  The guardian ad litem’s name was John Pecarek. Judge Penick asked him if he had had an opinion on who the best permanent guardian might be. “Michael Schiavo,” Pecarek stated firmly.

  “Case closed,” Penick declared, slamming his book closed, rising from the bench, and heading for the door.

  “Wait a minute, Your Honor!” Jim Sheehan shouted after him. “You haven’t even given me a chance to cross-examine him.”

  “It’s closed,” Penick said. “It’s over.” He walked out the door, Sheehan rushing after him to no avail.

  Sheehan filed for a rehearing motion, but Penick denied it. The judge was right. The case was closed. What’s more, the court ruled that all Michael’s legal expenses were to be paid from Terri’s medical fund, made up of the money he had won for her in the malpractice trial which he had pledged for her rehabilitation.

  We felt abandoned, trapped in a court system where a ju
dge can overturn the findings of his own investigator without explaining why and without giving the other side a chance to appeal. I was utterly bewildered. It was like watching frontier justice at work in an old western movie.

  Some months later, we got a notice from Michael’s lawyer asking if we wanted to pursue the case further. We called Sheehan. “There’s nowhere to go with it,” he said, and the case was permanently closed.

  It was closed “with prejudice,” Sheehan told us, but it was only much later that we learned what the term meant. Not only could we not question Penick’s ruling ever again, but we could not refile, in any instance, to have Michael removed as guardian.4

  We made so many mistakes in those first years! Lack of money was one reason: we simply couldn’t afford lawyers’ fees to pursue other avenues open to us. Optimism was another. Each time we went into court, or faced a hospital decision that went against Terri, we believed that justice would eventually triumph. After all, we were right—right to fight for Terri’s well-being, right to insist on our say in her care, right that she deserved the best care and legal consideration. I in particular knew that everything would come out well. How could anyone hurt Terri? It was inhuman, inhumane, unthinkable.

  We were so naïve.

  Whenever we visited Terri at Sabal Palms, the nursing staff would complain to us about Michael’s behavior. Some of them told us he bullied them, and shouted at them when they did not obey his orders, to the point where the Sabal Palms administration tried to limit his access to Terri. Terry Russell, the administrator, had flatly refused to deny Terri medication, and we were led to believe that Sabal Palms had been inclined to join us in our suit against Michael’s guardianship. As far as I was concerned, Terri might have been comfortable at Sabal Palms, but Michael wasn’t. So in 1994, he moved Terri to the Palm Gardens nursing home in Largo, where he continued to warehouse her, and there was nothing we could do about it.

  I fluctuate in my feelings toward Michael (much more than Bob, Bobby, or Suzanne), for I think back to the time at the beginning when Terri shone with love for him. For a long time, he was simply my son-in-law, part of the family. But it seemed to me then, and even more so now, that this moving of Terri was unconscionable.

  Terri’s transfer to Palm Gardens ensured, in effect, that Michael could do with Terri pretty much what he wanted, could keep back any medical information we sought.

  Terri received no physical, speech, or occupational therapy at Palm Gardens during the five years she was there. She was washed, fed, dressed, put in a wheelchair in the morning, put down for a nap in the afternoon, put back in the wheelchair in the evening, and then put into bed for the night. I visited as often as I could. Most times, Terri would brighten when she saw me, grow dispirited when I left, but sometimes she gave no sign of recognition, made no movement to indicate she was aware of her surroundings. She simply sat passively, strapped to her chair, lost in a world no one could enter.

  Those times made my heart ache. But then she would revive, and she became my daughter again—injured, God knows, but warm and sweet and precious. Alive to me, as I was to her.

  We speak of the years 1994 to 2000 as the “lull” in Terri’s case, the time from her transfer to Palm Gardens to Michael’s suit to have her feeding tube removed. Our days routinely included visits to Terri, but we went to work, shared dinners and phone calls, and tried to remind ourselves that there were other aspects to our daily lives.

  Still, neither side was inactive.

  Michael certainly wasn’t inactive in his personal life. Terri’s girlhood friend Sue Kolb, now married and living in Pennsylvania, called me in July 1997.

  “Did you see the obituary?” she asked.

  “What obituary?”

  “Michael’s mother died.”

  “I’m sorry to hear it.” I was. I’d always liked Claire, though I hadn’t spoken to her since the rift between us and Michael.

  “You know how in obituaries they always mention the siblings?”

  “Of course.”

  “Well, this one says, ‘survived by Michael Schiavo and his fiancée, Jodi Centonze.’”

  I was appalled. Not only did the obituary not mention Terri, to whom Michael was still legally married,5 but now he had a “fiancée.” It made me sick at my stomach. We’d heard that Michael was living with another woman, and it made me sick. But to announce in the newspaper that he was going to marry her? That was too much.

  All I could think of was how happy Terri was on her wedding day. Then I remembered Michael’s using his wedding vows to make an impression on the medical malpractice jury. How hurt Terri would have been if she had known!

  Michael’s handlers were busy on the legal front as well.

  On August 23, 1997, we got a letter from a lawyer named George Felos announcing that the “court in your daughter’s guardianship” had employed him “in the issue of withdrawal and/or refusal of medical treatment for your daughter.” Felos quickly became Michael’s champion. It is un-Christian not to love him, but I cannot do so. Felos might have been following Michael’s wishes during the ensuing years when he argued for him, protected him, schemed for him, twisted truth for him. But we believe that it was Felos’s strategy, not Michael’s, that dictated the course that led to the death of my daughter. Maybe he had a political agenda—to become a spokesman for the euthanasia movement—and used Michael as his willing tool.

  In 1995, some two years before he sent us the letter, Felos and Michael’s guardianship lawyer, Deborah Bushnell, began to work out a legal strategy, almost surely for the removal of Terri’s feeding tube. We know this because a court document (Bushnell’s accounting of her costs) records at least one call between the two of them “re assistance with the analysis of life-prolonging procedures.”

  Ignorant of the Bushnell-Felos conversations, which might have superseded all other issues, we hired an attorney named Alan Grossman to argue to the courts that we should be able to obtain Terri’s medical records, which had been cut off to us since 1993. It took him several months, but he finally prevailed, and the court granted us access to the medical information, though not to Terri’s finances. That was the deal: medical records, yes; financial records, no.

  It did us no good. I went to Palm Gardens armed with the court order and asked for the records. “I’m sorry,” they said. “We can’t release them without Mr. Schiavo’s permission, and Mr. Schiavo says you cannot have any medical information.”

  I brandished the paper. “But I have a court order—”

  They were implacable. “Sorry.”

  Bob called Grossman. “They’re not honoring the order,” he told the lawyer.

  “That’s terrible!” he said. “We’ll have to file a suit and set up a hearing.”

  “A suit? A hearing? How much time would it take? How much would it cost?”

  Grossman named a figure. I forget the exact amount, but we couldn’t afford it. “We’ll accumulate the money,” Bob consoled me. But by the time we had enough money, the matter of Terri’s medical records was submerged under far more important matters.

  In May 1998, Michael filed a petition with the probate court to have Terri’s feeding tube removed.

  Just writing that sentence brings back the horror of the moment we found out about it: August 23, 1997. I remember thinking that this couldn’t be coming from Michael, my son-in-law. Seven years earlier, he had fought side by side with me for her recovery; a husband who loved his wife could not conceivably petition for her death. Bob felt like someone had sucker-punched him in the stomach. Michael was trying to murder his daughter! Like Suzanne, he thought Michael was sick to even consider such a petition.

  Still, the petition did come from Michael, and I could feel my heart harden toward him. He might not love her enough to try to get her better, I thought, but her family did.

  I thought of what Michael did to Terri’s cats when he wanted them out of the way. Now Terri! I couldn’t sleep for a week. Every time I closed my eyes, I could
see Terri looking at me, begging for my help. Eating made me sick. Maybe it was my unconscious saying I shouldn’t eat if my little girl was going to be starved. I reassured myself that no judge would ever allow anyone to die of starvation. The thought did little to ease my pain.

  The case didn’t come into court until January 2000, perhaps because the court was waiting for the Florida Legislature to enact a law, championed by Felos, allowing feeding tubes to be declared artificial life support. (The feeding tube was the only “support” Terri needed, and to us it was as though the law was tantamount to declaring IVs artificial life support, which would put a whole lot of not very sick patients in danger of having them removed.)

  By that time, we had hired a lawyer, Pamela Campbell, to represent us, and her optimism heartened us. Still, this was a terrible time. I can’t possibly convey the anxiety we continued to feel or the pain of arising each morning thinking, They’re trying to kill our Terri.

  Until 2000, we were an ordinary family afflicted with a private tragedy. Now, however, we were about to plunge into a five-year siege in which the name Terri Schiavo became known throughout the world. And our lives—psychological, professional, philosophical, emotional—would be transformed forever.

  CHAPTER 8

  Permission Granted

  A friend of Bobby’s knew George Greer, the judge who would preside over Michael’s application to have Terri’s feeding tube removed. “He’s a good man,” Bobby’s friend said a few days before the trial was to begin. “A man of God. He has a good reputation. I think it’ll be a fair trial.”1

  We were sure that as soon as he heard our arguments, Judge Greer would throw the case out; nevertheless, I was sick with worry, and so was Bob, whose high blood pressure—a threat all his life—was acting up again. The tension was relentless. A judge, a stranger, was going to decide whether Terri lived or died. It seemed to me unfair and unfeeling. Judge Greer didn’t know Terri. And now we were told that his word could take her from us? Insane!