Idiot America: How Stupidity Became a Virtue in the Land of the Free (22 page)

“After a particularly tough death, they’ll come out here and take a walk. That’s the staff, the other residents, the families, everybody.”

The hospice grounds are designed for walking meditation, after the ancient English tradition of pilgrim prayer. The prayer flags reflect a Tibetan custom. You write a letter, or a prayer, to your loved one who has passed, and you hang it from the tree to stir in the breeze, and the thoughts and prayers find their way
to whatever afterlife there may or may not be. In the center of the garden is a small chapel with stained-glass windows that face all four points of the compass so that, depending on the time of day and the angle of the sun, the chapel is flooded with different kinds of light. It is a sacred spot, but not a sectarian one. It could be Christian or Jewish, Muslim or Buddhist, Hindu or Wiccan. There’s nothing here that suggests that there is a right answer to the biggest question of all. Just that the question is worthy of contemplation. “Depending on the time of day, the light changes in the chapel,” Annie says. “There’s a different kind of feeling in this place.”

The main building of the hospice is divided by corridors off a main lobby, and the corridors are given street names. On March 31, 2005, in a room off Beech Street, a woman died after a long illness. A service was held for her in the little chapel along the stone path. The entire staff turned out. So did the woman’s husband. Her parents did not come. Hers had not been a quiet death. The clamor had gotten through the fence, and nobody at Woodside ever was the same again.

“Over there,” Annie Santa-Maria says, as an elderly couple pass along the stone path, “that’s where the guy got over the fence, and the narcotics cops—we had off-duty narcotics cops patrolling the grounds at night—and over there’s where they grabbed him.”

She points past the pine trees and over the fence, toward one of the wide dusty lots across the street. That’s where they all had been—the crowds with their bloody signs and their empty crosses, and their useless, vain cups of water; the cops and the crazy television monks. At the end was the field where the television trucks had parked, their tall transmitters spiraling toward the sky, the electronic Golgotha at the end of a vicarious Media Dolorosa that began outside her office where, early one evening,
two priests had nearly gotten into a fistfight. She’d have broken it up, she says, but there was a federal marshal standing in her way.

“Your business,” Annie Santa-Maria says to a curious visiting journalist, her eyes flashing, and, for a moment, the quiet in the little grove seems to have some heft behind it. “Let me tell you about your business.”

IN
1961, Rafael and Lillian Santa-Maria were trying to find their way out from under Fidel Castro. Rafael was a neurosurgeon, one of the few remaining in Havana, so he was watched quite closely by government agents. He had trained in the United States, and his family had roots there going back to the antebellum South, where some of his ancestors had built a plantation that they had lost because they had insisted on giving their slaves property of their own. Rafael and Lillian slipped their children out of the country a few at a time, shipping them off to live with uncles and aunts who’d already emigrated. The last to leave were the two youngest, including Annie. “We were divided,” she recalls. “Myself and my brother, we stayed with my dad so the government wouldn’t know.”

Finally, one day, Rafael was allowed to attend a medical conference in the United States. He was allowed to leave Cuba as long as he brought along only $200 and a single suitcase. Lillian left the door of their house open, knowing that they would never be back. The family never learned what became of the rest of their belongings.

The Santa-Marias settled in Ohio; Rafael took a job with the Veterans Administration, which developed a dire need for neurologists as the war in Vietnam ramped up. Eventually, he went
into private practice. Annie felt herself drifting into health care as well. She earned a degree from Miami University in Ohio. She hated the northern winters, though, so she moved in with her sister near Tampa and got a master’s degree in social work from the University of South Florida.

It was the early 1980s, when the AIDS epidemic was beginning to reach flood tide. Much about the disease was still a mystery. AIDS put almost every hot-button issue into play all at once. It attacked gay men most conspicuously. It was a plague for the Gut, engaging unreasoning fear and apocalyptic religious fervor to feed off each other. “God is not mocked,” the Reverend Jerry Falwell thundered at his television congregation, intimating that the disease was God’s curse on a sinful population. Political calculation and religious judgmentalism became so thoroughly mixed that there were seventy thousand cases of AIDS in the United States before then-President Ronald Reagan said the name of the disease in public. In 1989, after Reagan had left office, Surgeon General C. Everett Koop, utterly fed up with theocratic sniping behind his back on this and other issues, simply quit in disgust. (At one point, Koop had been expressly forbidden from mentioning AIDS in public, an odd directive to hang on the nation’s doctor.) “I am the nation’s Surgeon General,” Koop said after leaving his post. “I am not the nation’s chaplain.”

The reaction to AIDS was mindless and visceral. Annie watched as the unreasoning national hysteria broke out. Nursing homes rejected AIDS patients. Health-care providers refused to care for them, coroners refused to autopsy their bodies, and undertakers refused to bury them. This abandonment of the dead and dying gave new momentum to the hospice movement; AIDS patients had a 100 percent chance of dying from their disease. The community of the disease began to fend for itself, building a supportive infrastructure almost from scratch.

“In ‘81 and ‘82,” Santa-Maria recalls, “we just knew of the gay men. It wasn’t really until the mid- to late eighties where they started diagnosing Haitians and so on. So there were no services, so we were scrambling to put the services together,

“I was a volunteer at first, and we started at a local church, which has a large gay population. We started the services and then we started an AIDS coalition.”

One of the coalition’s biggest problems was to find places that would accept AIDS patients. Woodside was one of the few places that would take in AIDS patients. Annie went to the Centers for Disease Control in Atlanta to learn which dangers were real and which were imaginary. She came back armed with what she believed to be firm medical facts. It didn’t matter. Even at Woodside, there were nurses whose husbands didn’t want them working in a building with AIDS patients, let alone working with the patients themselves.

“That was the fear,” she recalls. “I mean, if you’re going to help people, help them. We had regular staff meetings for that.”

The whole thing baffled Annie. Some of what she was hearing from the government and seeing in the media, and hearing from her friends and even from medical professionals, didn’t seem to have anything to do with the reality of the disease with which she worked. Yet those things affected her work as surely as that reality did. The situation reminded her a little of the way things had worked in Cuba, where the government would tell you something that you knew from your own experience could not possibly be true, yet people seemed willing to believe that it was, and to act upon that belief, until the manufactured reality displaced the actual one. She felt she was working in parallel worlds. There was the world of the disease, and of the people who had it; and then there was another world, in which everything was a symbol and in which her patients stood for something.
That second world orbited close by and caused the world of the disease always to wobble a little perilously in its orbit.

Eventually, in 1994, Annie went to work full-time at Woodside. She left briefly to work at another hospice but came back in a matter of months. Right about that time, a man named John Pecarek submitted a report to a Florida court. Pecarek had been appointed guardian ad litem to look after the interests of Terri Schiavo, a woman who’d suffered cardiac arrest on February 25, 1990, and who, having never regained consciousness, had been provided food and water ever since by means of a percutaneous endoscopic gastrostomy (PEG) tube.

Over the next three years, relations had deteriorated between Robert and Mary Schindler, the woman’s parents, and Michael Schiavo, her husband, who had been appointed his wife’s guardian three months after she was first hospitalized. In two separate malpractice suits, Terri Schiavo and her family had won well over $1 million. Shortly after the second of these awards, the relationship between Michael Schiavo and the Schindlers had broken down entirely. In 1994, the parents had tried to have Michael removed as guardian. Pecarek’s report shot down their motion. Michael Schiavo, it said, had acted “appropriately and attentatively
[sic]”
toward his desperately ill wife. In 1998, he moved her into the Woodside Hospice. In May of that year, citing what he said had been the express wishes of his wife, Michael Schiavo petitioned a court to have his wife’s feeding tube removed so that she could die in peace. Her parents opposed the motion.

The case already had a life beyond the hospice. In 1990, a similar case involving a woman named Nancy Cruzan had galvanized religious conservatives, but they had lacked the media savvy and technological ability to create the political momentum to seriously exploit it. The Schiavo case was different. The
right had the means to make its case, and many people were more than willing to listen.

“Unlike in 1990,” wrote Damon Linker in
The Theocons
, his memoir of his career inside the religious right, “opponents of the right-to-die now had talk radio and cable news—not to mention a sympathetic president and Congress—on their side to counter the indifference of the mainstream media to their cause.”

In 2001, Annie Santa-Maria had been appointed director of inpatient and residence care at the hospice. She walked into the job with her eyes open. One of her duties was to mediate disputes among family concerning a patient that was dying. People argued about money, about the disposition of the body. She felt something familiar in the Schiavo case. Over the intervening year, something was stirring that she remembered from her experience during the early days of the AIDS epidemic. Something was being fashioned out of this case. That other world was close by again, and her world was beginning to wobble in its regular orbit.

“When Terri came, we thought, ‘Well, okay, it’s going to be a couple of weeks, then we’ll get her admitted, and then the judge will assign the date of when actually to remove the tube,’” Annie tells me. “We thought it was just going to be a matter of a few weeks, of getting it on the court docket—that’s what Mr. Schiavo expected, and that’s certainly what we expected. Well, their attorneys kept throwing out allegations, and that one gets dismissed, so, ‘Well, let’s file another one.’ We had no idea that this was going to be years.

“What’s stunning, and what was never really reinforced in the media, was that this happens every day, hundreds of times a day, in each county in every state of this land. People remove a ventilator. People remove a feeding tube. But in this case, people had something new every few months. There was a new allegation.
There was a legal proceeding for something wrong with her care that they kept bringing. They had to bring evidence, and then that evidence was dismissed because there really was no evidence, and then it was ‘Okay, let’s start with the next one.’ And they went through many attorneys to do this, to either accuse Michael of being abusive or accuse us of not doing our jobs. They tried every which way to do that. And then when that stopped working, what they did was try the case in the public, you know? That’s when the right wing got involved.”

On April 24, 2001, after a Florida appellate court upheld an order by Circuit Judge George Greer, the PEG tube was removed from Terri Schiavo. People inside the hospice noticed that a few people with candles had gathered on the other side of the road. Two days later, another court, acting on a motion filed by the Schindlers, ordered that the tube be reinserted. A television truck from CNN arrived shortly thereafter. It was big and boxy and it parked in the dusty lot down across the street from the Cross Bayou Elementary School. More people gathered. More television trucks arrived. The people in the row of machine shops made some money renting space to the media. What Annie Santa-Maria now calls the siege had begun.