A Sea of Volunteers Surrounds Terri Schiavo

CLEARWATER, Fla. — They have demonstrated and made phone calls, sent out hundreds of e-mails, researched and brainstormed. And they have prayed.

They are tired, and they are worried — tired of being labeled religious fanatics and worried about the indifference to the value of a human life.

They are a group of volunteers who have been helping the parents of Terri Schiavo, a 40-,year-old disabled Florida woman who suffered brain damage after collapsing in 1990 and has been kept alive ever since with the help of a feeding tube.

For the past several years, Terri has been at the center of a bitter legal battle between her husband and legal guardian, Michael Schiavo, and her parents, Robert and Mary Schindler.

The courts have found Terri to be in a “persistent vegetative state,” which her family denies. They believe she might be able to recover if given the proper therapy. Her family also disputes Michael Schiavo's contention that Terri told him she never wanted to be kept alive by artificial means.

Michael Schiavo has asked the courts to order the removal of her feeding tube even though she can breathe on her own and is not in a coma. In mid-October the tube was removed, thus beginning the slow process of starving her to death. Six days later, however, an emergency bill dubbed “Terri's Law” was hastily written and passed by the Florida Legislature. It gave Gov. Jeb Bush the authority to order that the tube be reinserted.

The next major step in the legal battle, which could occur in the next several months, is for a Circuit Court judge to rule on the constitutionality of the new law.

One of the volunteers, Mary Lewis, said she thinks there's a spiritual battle going on.

“It's a war between good and evil,” she said.

Lewis became a volunteer during spring 2001 when she read in the news that Terri's feeding was stopped, though the tube was left in place (feeding was resumed two days later). Lewis' daughter suffered a brain injury when she was a baby, but Lewis knows brain-injured people can be helped. That's why she felt “something horrible” was happening when Terri's feeding was stopped, and she wanted to help.

Lewis' job as a volunteer is to be a disability advocate. She sends out e-mails and gathers research. She made signs that were used by some people who went to demonstrate outside the hospice when Terri's feeding tube was about to be pulled in mid-October.

One of Lewis' fears is that a lot of people who are vulnerable will end up being put to death in this manner one day rather than getting the help they need, she said.

Another volunteer, Pamela Hen-nessy, acts as a liaison between the media and the Schindler family. She said she decided to get involved in fall 2002 after listening to a radio program. She did some research about Terri's situation and felt compelled to help.

“It's really frightening,” Hen-nessy said. “It's abandonment. If you ask me, I think it's murder, taking someone's food and water away from them.”

With her experience in marketing and advertising, she sends out e-mail advisories to the media and has developed and maintained the family's Web site, www.terrisfight.org.

After some brainstorming sessions with others, she also created an online petition to Gov. Bush asking him to intervene. About 150,000 people petitioned him between mid-July and mid-October, she said.

As the marketing manager for a technology company in Tampa, Fla., Hennessy already has a full-time job. But volunteering has become like a full-time job as well. Since March, she estimated she has volunteered seven days a week, sometimes for several hours per day. In October, when Terri's feeding tube was removed, it wasn't unusual for her to be up from 5 a.m. to midnight, she said.

She gets approximately 100 to 200 e-mails a day from people across North America and around the world, including the United Kingdom and South Africa. The e-mails come from doctors who have offered to evaluate and take care of Terri free of charge, rehabilitation facilities that have offered to take Terri in if her parents can get Michael Schiavo to agree to it, concerned nurses and people willing to go grocery shopping for the family or run errands.

Hennessy said she doesn't have a faith affiliation.

“I consider myself a humanitarian,” she said, adding that some people have tried to paint people who side with the Schindlers as “crazy right-wingers” and “fanatics.” She said that's far from the truth.

“They're everything under the sun,” she said. “There are disabled people. There are women. There are people with Christian faith. There are Jewish people. There are people who see it as a huge wrong and want to help to put it right.”

Terri's family is Catholic, and Msgr. Thaddeus Malanowski has been visiting her for more than three years. In October, after Terri's tube was removed and it was thought she would die soon, he was prevented from giving her last communion.

Michael Schiavo and his attorney, George Felos, have alluded to the supporters of the Schindler family in past interviews. In a late October appearance on CNN's “Larry King Live,” in response to a question as to why the Schindlers want their daughter to live, Michael responded: “Mr. and Mrs. Schindler know exactly what condition she's in. They were there in the beginning. They know exactly the position she's in. But now they're being — now they're being fed all this information from these right-to-life activists that's fueling their little flame. They know exactly the position Terri's in.”

In a story that appeared last August, Felos said the parents are being driven by ideology, with the financial support of “fanatic” proponents.

“This case really is about ideology,” Felos told the Cybercast News Service. “It's about the ideology of the parents and their attempts to impose their will on Terri. The Schindlers are being supported financially, their lawyers are being paid by the fanatic anti-choice, right-to-life proponents in this country.”

But Cheryl Ford, another volunteer who lives in the Tampa area and is also a registered nurse, decided to see what was going on the day Terri's feeding tube was removed.

When she arrived at the hospice, she found the media, people with signs, people praying and disabled people in wheelchairs with “saddened, worried and distressed expressions,” she said. Police were blocking entrances and checking who went in and out of the building. Ford said she felt like she was in the middle of a dream.

As a Catholic, she believes humans don't have the right to decide when someone else should die. When she went home that day, she sent e-mails to nurses across the country asking for their help and support. Since then, she said she has collected research that fills two binders, each about 3 1/2 inches thick, which she has shared with the Schindlers' attorney, Patricia Anderson.

She helped organize a celebration for Terri's 40th birthday Dec. 3 and put together a photo collage for the party. Hundreds of well-wishers from all over the world have been e-mailing their photos, and she figures once she's done putting them all together it will fill the size of a door.

Ford also receives approximately 200 to 300 e-mails a day.

“I never know when the one e-mail will come in to help the Schindlers, so I feel this responsibility to open them,” said Ford, a mother of three who assists her husband, a dentist, and is the chief executive officer of an elder care agency in Seattle.

These examples of support, which have come at different levels from several hundred volunteers, have been immensely helpful to the Schindler family, Robert Schindler said.

“I can't even begin to express what they've meant to me,” he said. “They've done so much. They've given us, my whole family, so much support and encouragement. That's what kind of keeps you going. We do have some bad days. If you see the information coming out of the courts — that can be very discouraging how the courts have treated Terri. And these people have all been there to give us the strength to continue.”

Carlos Briceno writes from Seminole, Florida.