THE LEGACY OF TERRI SCHIAVO

In the end, Terri Schiavo's bitterly divided family couldn't even agree on what she looked like as she slowly died. Late last week her loved ones visited her bedside at the Woodside Hospice House in Pinellas Park, Fla., where the feeding tube that kept her alive was removed one week before. They caressed her luminous skin and squeezed her gnarled hands. According to her parents and siblings, who had fought unsuccessfully to keep the tube connected, Schiavo resembled an Auschwitz survivor, her cheeks sunken and her lips desiccated by dehydration. She seemed full of torment, said a family spokesman.

"It was as if she was pleading with her mother for help." But in the scene described by her husband's family, which had battled to cut off Schiavo's nourishment, she appeared to be quietly and serenely slipping away. "She's very peaceful," said her brother-in-law Brian Schiavo last week. "Her wishes are being carried out."

No one will ever know what Terri Schiavo's true wishes were. She never left a written directive explaining what to do in the event that she lapsed into a vegetative state, as she did 15 years ago after her heart stopped. But one thing is certain: Schiavo would never have wanted her loved ones to rip each other apart, as they have for more than a decade. And she surely would have shuddered at the sight of the ghoulish spectacle that her ordeal became.

The seven-year legal battle that pitted her husband, Michael Schiavo, against her parents, Robert and Mary Schindler, was the longest-running of any right-to-die case ever in the United States--one that drew in countless judges in both state and federal courts before finally concluding with the decision to terminate her life support. Along the way, what might have remained a private tale of warring egos collided with a polarizing political debate over the "culture of life." The resulting conflagration culminated in an unprecedented mobilization of powerful actors--including the Florida governor and Legislature, the Congress, the president, the Vatican and scores of activist groups--all struggling over the fate of one disabled woman entirely unaware of the commotion surrounding her. In the aftermath, the public will have big issues to deliberate, like the case's effect on the separation of powers and the partisan divide cleaving the country. But the Schindlers and the Schiavos will have to grapple with something much more intimate: the void left by a beloved woman whose life was clipped short just as it was starting to blossom.

Terri Schiavo grew up in a middle-class subdivision outside Philadelphia as the oldest of three kids. An animal lover who was shy and insecure about her weight, she had more hamsters and birds than friends. By 1981, in her senior year at an all-girls Roman Catholic high school, she had reached as much as 250 pounds--at which point she went on a NutriSystem diet and quickly lost about 100 pounds. Soon thereafter, she met Michael Schiavo at a community college, and he asked her out. "She fell for the first guy who came along and paid any attention to her," her sister Suzanne told NEWSWEEK in 2003. After dating for five months, the couple got engaged. They married in 1984 and eventually moved to Florida, where Michael worked as a restaurant manager and Terri as an insurance-claims clerk. Things weren't always smooth. Terri complained to her friend Jackie Rhodes that Michael was so controlling that he tracked the mileage on her new Toyota. When they decided to start a family, Terri had trouble getting pregnant, and sought help from an obstetrician. By that time, Terri weighed 110 pounds, and had a figure she proudly flaunted by wearing bikinis for the first time. No one suspected that she had an eating disorder, though in hindsight, her friend Diane Meyer remembers the meagerness of Terri's typical lunch: a bagel chopped into tiny triangular pieces, with minute dabs of cream cheese.

Doctors blame her eating disorder for the tragedy that befell her in the early hours of Feb. 25, 1990. Awakened by a thud, Michael found Terri, then 26, lying in the hallway, making a gurgling sound. She had suffered cardiac arrest, probably provoked by bulimic purging that generated a severe potassium deficiency. The loss of oxygen to her brain caused permanent damage. With her cerebral cortex degenerated into scar tissue and spinal fluid, Terri fell into a "persistent vegetative state," retaining the capacity for reflexes like coughing or grimacing but lacking any cognitive ability.

In the early years of her condition, Michael and the Schindlers got along harmoniously, even living together in a house on the Gulf Coast for a while. They ensured that Terri received all variety of therapies, including physical, occupational and recreational. When those didn't work, Michael flew her out to California, where a doctor implanted platinum electrodes into her brain as part of an experimental procedure that ultimately failed. Back in Florida, Michael enlisted family members to record audiotapes of their voices, which he played for Terri on a Walkman. He was fastidious about Terri's appearance, spraying her with Picasso perfume and outfitting her in stirrup pants and matching tops from The Limited. At one Florida nursing home, he was so demanding that administrators sought a restraining order against him. But Gloria Centonze, who worked there at the time (and by coincidence later married into the family of Michael's future girlfriend), recalls a frequent comment among the nurses: "He may be a bastard, but if I was sick like that, I wish he was my husband." To better care for Terri, Michael even enrolled in nursing school.

Eventually, however, his relationship with the Schindlers soured over money. Michael had sued the obstetrician who oversaw Terri's fertility therapy for malpractice, arguing that the doctor should have detected her potassium imbalance. A resulting settlement yielded roughly $700,000 for Terri--which was placed in a trust fund controlled by a third party for her medical care--and $300,000 for Michael. On Valentine's Day in 1993, the Schindlers met Michael in Terri's room and discussed how to spend the award money. While the parents claim that Michael refused to use it for new treatment options, Michael alleges that they simply wanted the cash for themselves. Whatever the truth is, the discussion escalated into a vitriolic fight, and both sides stormed out, never to speak again.

After that, the relationship became steadily more toxic. Michael had begun to resign himself to the prospect that Terri would never improve, according to his court testimony. When she developed a urinary-tract infection in 1994, Michael followed a doctor's recommendation not to treat it, and entered a "do not resuscitate" order (which he later rescinded after the nursing home and the Schindlers protested). The parents responded with one of many legal attempts--all of them unsuccessful--to remove Michael as Terri's guardian, accusing him of abuse, neglect and adultery (he had moved in with a girlfriend and eventually had two babies with her). More than a few observers have questioned the timing of Michael's change of heart, coming so soon after the malpractice award. But Michael has repeatedly insisted that after years of fruitless efforts to revive Terri, he had simply given up hope.

He had good reason to, according to most medical experts. After so many years in a persistent vegetative state, says James Bernat, a Dartmouth neurologist, the chance of recovery is "so close to zero, you might as well call it zero." Schindler supporters often point to videos posted online that seem to show Terri tracking the movement of a balloon and responding to her parents' prodding. "But these are random reflex movements," says William Winslade, a bioethicist at the University of Texas Medical Branch in Galveston. "It's uncanny how the eyes blink and seem to move and follow sounds, but they're not." The Schindlers also repeatedly sought permission to try alternative therapies like dilating the blood vessels to pump more blood and oxygen to the brain. Yet that would have been pointless, argues Ronald Cranford, a neurologist who examined Terri in 2002. "Increase the blood flow to dead tissue, and what do you get?" he says. "Dead tissue."

Faced with such bleak prospects, Michael petitioned a Florida state court to remove Terri's feeding tube in 1998. That action led to a 2000 trial that sought to answer an impossible question: in the absence of explicit instructions from Terri, what were her intentions? One of the Schindlers' witnesses, Terri's childhood friend Diane Meyer, claimed that the topic of life support once came up in a conversation they had about the case of Karen Ann Quinlan, whose feeding tube was removed in 1985. "How did they know she would want this?" Terri allegedly asked Meyer. "How did they know she wouldn't want to go on?" Testifying for his brother Michael, Scott Schiavo recounted an exchange he had with Terri after seeing Michael's grandmother hooked up to a ventilator. As Scott recalls it today, "I can still see Terri looking right into my eyes and saying, 'Not me. No way. I would not want to live like that'." In the course of the trial, the Schindlers also made what a court-appointed guardian for Terri deemed "horrific" and "gruesome" comments--that the family would never remove Terri's feeding tube even if she had asked them to, and that even if she developed gangrene, the family would amputate her limbs to keep her alive. Ultimately, the judge sided with Michael. The tube was disconnected in 2001, only to be restored within days, after the parents appealed.

Just as the Schindlers' legal options gradually dwindled, though, Terri's case increasingly gained a national profile. Catholic, evangelical and anti-abortion groups seized on the parents' cause, helping to publicize it and, more importantly, fund it. Four years ago the anti-abortion Life Legal Defense Foundation, for instance, began helping to pay for the Schindlers' legal costs-- a contribution that now totals at least $300,000. Pressure from such activists also helped catch the attention of politicians eager to burnish their pro-life credentials. In 2003, when the courts once again ordered Terri's feeding tube removed, the Florida Legislature passed an unprecedented--and ultimately unconstitutional--law that allowed Gov. Jeb Bush, a Catholic, to intervene in the case.

But that action pales in comparison with the national--and even international--frenzy of the past month. Once again facing the prospect of Terri's death, Governor Bush tried to block the tube removal through executive and legislative powers. When that didn't work, his former adviser Ken Connor decided it was time to nationalize Terri's case--a longtime conservative fantasy. Already, religious leaders like Richard Land of the Southern Baptist Convention were on the airwaves, threatening political repercussions against lawmakers who failed to step up and fight for Terri. Connor reached out to U.S. Rep. Dave Weldon, a doctor and Florida Republican. In a House office, they gathered a strategy team including representatives from such pro-life groups as the Family Research Council and National Right to Life. They quickly settled on a strategy: to craft a broadly worded bill aimed at the due-process rights of disabled people like Terri, though her name wouldn't be mentioned. Meanwhile, Connor got a call from longtime friend U.S. Sen. Mel Martinez of Florida, who had heard rumors about the legislative activity. "Kitty [his wife] and I have been talking about it," he told Connor, "and I feel strongly" about helping out.

But in the Senate, lawmakers felt more comfortable with a bill narrowly tailored to Terri's case--an approach that would help secure Democratic support. Only days before the scheduled withdrawal of her feeding tube on March 18, House and Senate negotiators still hadn't reached a compromise on a bill. Connor blew up on a phone call with a senior GOP House member: "What's the point of having Republicans in control?" he asked. "The Republican base is going to hold the House leadership accountable." On the day of the tube removal, House Majority Leader Tom DeLay announced that the House would try the innovative--some said macabre--tactic of issuing subpoenas for Terri and Michael to appear before Congress. The ploy failed, however, and Terri's lifeline was cut off for the third time. With the clock ticking, the House and Senate finally reached a compromise the following day. The new bill's effect: to offer the Schindlers a last-ditch attempt in federal court. It was an extraordinary act by lawmakers, and one that immediately invited accusations of congressional overreaching. But members "couldn't tell anyone they are pro-life with a straight face if they just sat back and did nothing," says a House leadership aide. The same is true of a Democratic senator like Bill Nelson, a prime GOP target in the 2006 midterm elections, who, not surprisingly, voted in favor of the bill.

President George W. Bush had been monitoring these developments closely. On the eve of the tube's removal, he had traveled to Florida to tout his Social Security plan. Accompanying him on the plane ride were several Florida lawmakers, including Weldon and Martinez, who pressed Bush on the Schiavo case. Though Bush "told us that he supported our efforts," says Weldon, "he said that he didn't want to get directly involved." He also wanted to ensure that whatever bill Congress crafted wasn't unconstitutional and, according to Weldon, directed the Justice Department to advise on the legislation. Later that day in Orlando, Bush briefly discussed the Schiavo case with his brother Jeb (the White House refused to provide details). Then on Sunday, Bush flew to Washington from his Crawford, Texas, ranch, expressly to sign the Schiavo bill, which he did just after 1 a.m. Monday. The outcome of all that bustle? Quick rejections from federal judges all the way up to the U.S. Supreme Court, leaving little doubt about who was in charge. Given polls showing solid majorities supporting the tube's withdrawal, Republicans may have overplayed their hand.

With their legal options virtually depleted, the Schindlers could only pray for a miracle. Governor Bush tried to provide one last Thursday, suggesting that the state might take custody of Terri--and raising the alarming prospect of a confrontation between state authorities and local police who were guarding the hospice. But a state judge quickly banished that possibility. In Tallahassee, state lawmakers--some of whom received threatening messages from Schindler partisans--failed to muster enough votes for a new "Terri's Law." All of which left Weldon throwing up his hands. "I'm not sure what more there is we can do," he said.

As the firestorm finally began to subside last weekend, all Terri's loved ones could do was await her death. Doctors say there's no reason to believe she was suffering, since she lacks the brain function necessary to feel such a thing. For the Schindlers, there was little to console them but their faith. For Michael, perhaps there will finally be closure, which has eluded him for seven years. And for Terri, who struggled so mightily for control in her battle with weight, there was only the terrible irony that, in the end, she had no control at all over the forces that warred over her fate.

CORRECTION

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