Terri Schiavo's family bares its soul in new book

TAMPA - One year ago, everyone was talking about Terri Schiavo.

Few knew the 41-year-old severely brain-damaged woman, but they knew her name, from President Bush and Pope John Paul II to the millions of people who were riveted by the wall-to-wall news coverage of her final days.

Now her family - parents Robert and Mary Schindler, brother Bobby Schindler and sister Suzanne Schindler Vitadamo - have collaborated on a new book that throws open the curtains on those desperate, emotional times as they fought to keep her alive and watched a private family feud culminate in a surreal public spectacle outside the hospice where she lived.

"A Life That Matters: The Legacy of Terri Schiavo - A Lesson For Us All," on sale March 28, drops no bombshells, but offers an enlightening glimpse into the private lives and tremendous personal suffering of a family that became consumed with stopping their son-in-law, Michael Schiavo, from removing the feeding tube that kept Terri alive for 15 years.

Written mostly in Mary Schindler's voice, the book recounts Terri's early years in Pennsylvania, her marriage to Michael Schiavo, her collapse in 1990 and the Schindlers' escalating battle with their son-in-law as he fought in the courts to allow Terri to die, claiming that she wouldn't want to live in a persistent vegetative state.

"Until 2000, we were an ordinary family afflicted with a private tragedy," Mary Schindler says, reflecting on the first public court hearing. "Now, however, we were about to plunge into a five-year siege in which the name Terri Schiavo became known through the world. And our lives - psychological, professional, philosophical, emotional - would be transformed forever."

The family acknowledged being naive and unprepared for such a battle, their legal moves and strategy dictated mostly by a series of lawyers who took up their cause and found creative ways to delay removal of Terri's feeding tube when court after court ruled against them. Sometimes the Schindlers were too emotional, overwhelmed and confused to grasp exactly what was happening.

"I felt I was living in a parallel world, where a different language - legalese - spoke a set of incomprehensible rules," Mary Schindler writes. "I felt no connection to this world, yet knew that Terri's fate would be decided by those rules, and not by anything that governed my world, where humanity has less to do with the law than with the heart."

There is measured vitriol throughout for Michael Schiavo, who they once embraced, and the family repeats unsubstantiated charges that he may have done something to cause Terri's collapse at age 26. She was long believed to have suffered a heart attack from a potassium imbalance brought on by an eating disorder, but an autopsy showed no evidence of that.

Michael Schiavo, who recently remarried and is releasing his own book on March 27, has repeatedly denied hurting his wife. He contended that he sought the court order to remove her feeding tube because he once promised her that he would never keep her alive by artificial means with no hope of recovery.

A spokeswoman for his publisher said Michael Schiavo plans no comment until after his book - titled "Terri: The Truth" - hits the stores.

The Schindlers' book recounts Terri's father breaking down in tears upon meeting Gov. Jeb Bush on the day her feeding tube was removed the second time, in October 2003. (The tube was first removed in 2001 under court order but was reinserted two days later when another court interceded). An emergency bill pushed through the Legislature by Bush got the tube reinserted after six days and set the stage for a showdown last year that would end up drawing in Congress, the U.S. Supreme Court, the Vatican and the White House.

The dispute nearly created a constitutional crisis. Congress, the president and Florida lawmakers moved to block the court order that her feeding tube be removed. The courts rebuffed political efforts to undermine their authority and the separation of powers.

The Schindlers acknowledge they took advantage of the fact that their struggle had turned into a high-profile political cause that attracted sign-toting anti-abortion activists, the Rev. Jesse Jackson, conservative talk radio commentators and every major media outlet to the vigil outside Terri's hospice.

"If politicians and media pundits could help, we welcomed them, and we didn't stop to figure out who honestly cared and who was merely riding on the bandwagon," they wrote. "Together, their voices were loud and clear and moving, and we were grateful to them."

Terri Schiavo died last March 31, 13 days after her feeding tube was removed. An autopsy said she suffered from irreversible brain damage and probably was blind. In the book, the family continues to insist that Terri interacted with them, tried to speak and may have gotten better with therapy, a position supported by some doctors and therapists.

They believe more than ever that what happened to Terri was wrong and have made it their life's work to advocate for people in her condition, push for legislation to protect the disabled and vulnerable, and "confront the culture of death in our society."

The entire family is now involved full time in the Terri Schindler Schiavo Foundation, which opened an office in St. Petersburg last year.

Bobby Schindler said in an interview that after his sister died, the family felt they needed to tell their story because people didn't get the full story from the media and "were making conclusions about Terri with less than all the facts."

"I hope it comes through how close our family was in this battle," he said. "And Terri would be fighting just as hard if it was Mom or Dad or me or Suzanne, and this whole notion she would have wanted to be killed is ridiculous."

David C. Gibbs III, one of the Schindlers' attorneys, also is writing a book due out in August. At least four other books about the Schiavo saga are already in print.