The Best American Science and Nature Writing 2014 (11 page)

What these growers wanted most, he knew, was reassurance that he could help them should the disease spread. But he had to warn them: “If we don't have consumer confidence, it doesn't matter what we come up with.”

 

Planting

 

One recent sunny morning, Kress drove to a fenced field, some distance from his office and far from any other citrus tree. He unlocked the gate and signed in, as required by Agriculture Department regulations for a field trial of a genetically modified crop.

Just in the previous few months, Whole Foods had said that because of customer demand it would avoid stocking most GMO foods and require labels on them by 2018. Hundreds of thousands of protesters around the world had joined in a “March Against Monsanto”—and the Agriculture Department had issued its final report for this year's orange harvest showing a 9 percent decline from last year, attributable to citrus greening.

But visiting the field gave him some peace. In some rows were the trees with no new gene in them, sick with greening. In others were the three hundred juvenile trees with spinach genes, all healthy. In the middle were the trees that carried his immediate hopes: fifteen mature Hamlins and Valencias, 7 feet tall, onto which had been grafted shoots of Mirkov's spinach-gene trees.

There was good reason to believe that the trees would pass the EPA's tests when they bloom next spring. And he was gathering the data the Agriculture Department would need to ensure that the trees posed no risk to other plants. When he had fruit, the Food and Drug Administration would compare its safety and nutritional content to conventional oranges.

In his office is a list of groups to contact when the first GMO fruit in Florida is ready to pick: environmental organizations, consumer advocates, and others. Exactly what he would say when he finally contacted them, he did not know. Whether anyone would drink the juice from his genetically modified oranges, he did not know.

But he had decided to move ahead.

Late this summer he will plant several hundred more young trees with the spinach gene, in a new greenhouse. In two years, if he wins regulatory approval, they will be ready to go into the ground. The trees could be the first to produce juice for sale in five years or so.

Whether it is his transgenic tree or someone else's, he believed, Florida growers will soon have trees that could produce juice without fear of its being sour or in short supply.

For a moment, alone in the field, he let his mind wander.

“Maybe we can use the technology to improve orange juice,” he could not help thinking. “Maybe we can find a way to have oranges grow year-round, or get two for every one we get now on a tree.”

Then he reined in those thoughts.

He took the clipboard down, signed out, and locked the gate.

FROM
The New York Times Magazine

 

I
F MARGARET PABST BATTIN
hadn't had a cold that day, she would have joined her husband, Brooke Hopkins, on his bike ride. Instead Peggy (as just about everyone calls her) went to two lectures at the University of Utah, where she teaches philosophy and writes about end-of-life bioethics. Which is why she wasn't with Brooke the moment everything changed.

Brooke was cycling down a hill in City Creek Canyon in Salt Lake City when he collided with an oncoming bicycle around a blind curve, catapulting him onto the mountain path. His helmet cracked just above the left temple, meaning that Brooke fell directly on his head, and his body followed in a grotesque somersault that broke his neck at the top of the spine. He stopped breathing, turned purple, and might have died if a flight-rescue nurse hadn't happened to jog by. The jogger resuscitated and stabilized him, and someone raced to the bottom of the canyon to call 911.

If Peggy had been there and known the extent of Brooke's injury, she might have urged the rescuers not to revive him. Brooke had updated a living will the previous year, specifying that should he suffer a grievous illness or injury leading to a terminal condition or vegetative state, he wanted no procedures done that “would serve only to unnaturally prolong the moment of my death and to unnaturally postpone or prolong the dying process.” But Peggy wasn't there, and Brooke, who had recently retired as an English professor at the University of Utah, was kept breathing with a hand-pumped air bag during the ambulance ride to University Hospital, 3 miles away. As soon as he got there, he was attached to a ventilator.

By the time Peggy arrived and saw her husband ensnared in the life-sustaining machinery he had hoped to avoid, decisions about intervention already had been made. It was November 14, 2008, late afternoon. She didn't know yet that Brooke would end up a quadriplegic, paralyzed from the shoulders down.

Suffering, suicide, euthanasia, a dignified death—these were subjects she had thought and written about for years, and now, suddenly, they turned unbearably personal. Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality—and would discover just how messy, raw, and muddled the end of life can be.

 

In the weeks after the accident, Peggy found herself thinking about the title character in Tolstoy's
Death of Ivan Ilyich
, who wondered, “What if my whole life has been wrong?” Her whole life had involved writing “wheelbarrows full” of books and articles championing self-determination in dying. And now here was her husband, a plugged-in mannequin in the ICU, the very embodiment of a right-to-die case study.

An international leader in bioethics, Peggy explored the right to a good and easeful death by their own hand, if need be, for people who were terminally ill, as well as for those whose lives had become intolerable because of chronic illness, serious injury, or extreme old age. She didn't shy away from contentious words like “euthanasia.” Nor did she run from fringe groups like NuTech, which is devoted to finding more efficient methods of what it calls self-deliverance, or SOARS (Society for Old Age Rational Suicide), which defends the right of the “very elderly” to choose death as a way to preempt old-age catastrophes. She also found common purpose with more mainstream groups, like Compassion and Choices, that push for legislation or ballot initiatives to allow doctors to help “hasten death” in the terminally ill (which is now permitted, with restrictions, in Oregon, Washington, Montana, and Vermont). And she testified in trials on behalf of individuals seeking permission to end their lives legally with the help of a doctor or a loved one.

At the heart of her argument was her belief in autonomy. “The competent patient can, and ought to be accorded the right to, determine what is to be done to him or her, even if . . . it means he or she will die,” she wrote in 1994 in
The Least Worst Death
, the third of her seven books about how we die.

Peggy traces her interest in death to her mother's difficult one, from liver cancer, when Peggy was twenty-one. Only later, when, in order to write fiction, she started in an MFA program at the University of California, Irvine (which she completed while getting her doctorate in philosophy and raising two young children) did she realize how much that event had shaped her thinking. Her short stories “all looked like bioethics problems,” she says, wrestling with topics like aging, mental competence, medical research, suicide—moral quandaries she would be mining for the rest of her life.

Fiction allowed her to riff on scenarios more freely than philosophy did, so she sometimes used it in her scholarly writing. In
Ending Life: Ethics and the Way We Die
, published in 2005, she included two short stories: a fictional account of an aged couple planning a tandem suicide to make way for the younger generation, until one of them has a change of heart; and a story based on an actual experience in grad school, when Peggy had to help a scientist kill the dogs in his psych experiment. The point of including the second story, she wrote in the book's introduction, was to ground her philosophical arguments in something more elemental, “the unsettling, stomach-disturbing, conscience-trying unease” of being involved in any death, whether through action, as happened in that laboratory, or acquiescence.

When Peggy finished her doctorate in 1976, the right-to-die debate was dominated by the media spectacle around Karen Ann Quinlan, a comatose young woman whose parents went to the New Jersey Supreme Court for permission to withdraw her from life support. It helped Peggy clarify her thoughts about death with dignity and shaped her belief in self-determination as a basic human right. “A person should be accorded the right to live his or her life as they see fit (provided, of course, that this does not significantly harm others), and that includes the very end of their life,” she wrote in one of her nearly forty journal articles on this subject. “That's just the way I see it.”

That's the way she saw it after Brooke's accident too, but with a new spiky awareness of what it means to choose death. Scholarly thought experiments were one thing, but this was a man she adored—a man with whom she had shared a rich and passionate life for more than thirty years—who was now physically devastated but still free, as she knew he had to be, to make a choice that would cause her anguish.

“It is not just about terminally ill people in general in a kind of abstract way now,” she wrote after the accident; “it's also about my husband, Brooke. I still love him, that's a simple fact. What if he wanted to die? Can I imagine standing by while his ventilator was switched off?”

 

Before the collision, Brooke was known for his gusto. “At parties he was the one who ate the most, drank the most, talked the loudest, danced the longest,” one friend recalls. A striking six-foot-five, he had a winning smile and a mess of steely gray hair and was often off on some adventure with friends. He went on expeditions to the Himalayas, Argentina, Chile, China, Venezuela, and more; closer to home, he often cycled, hiked, or backcountry skied in the mountains around Salt Lake City. In addition, Brooke, who had a bachelor's degree and a doctorate from Harvard, was a popular English professor who taught British and American literature and had a special fondness for the poetry of Wordsworth, Shelley, Byron, and Keats.

All that energy went absolutely still at the moment of his collision. When Brooke woke up in the ICU, his stepson, Mike, was at the bedside and had to tell Brooke that he might never again walk, turn over, or breathe on his own. Brooke remained silent—he was made mute by the ventilation tube down his throat—but he thought of Keats:

 

The feel of not to feel it,

When there is none to heal it

Nor numbed sense to steel it.

 

“Those words, ‘the feel of not to feel it,' suddenly meant something to me in ways that they never had before,” he wrote later on a blog that his stepdaughter, Sara, started to keep people apprised of his progress. “My suffering was going to be a drop in the bucket compared to all the human suffering experienced by people throughout human history, but still, it was going to be a suffering nevertheless.”

Brooke took some solace in Buddhism, which he began exploring when he was in his forties. A few weeks after the accident, a local Buddhist teacher, Lama Thupten Dorje Gyaltsen, came to his hospital room. “The body is ephemeral,” Lama Thupten declared, gesturing at his own body under his maroon-and-saffron robe. He urged Brooke to focus on his mind. At the time, it was a comfort to think that his mind, which seemed intact, was all that mattered. It meant he could still be the same man he always was even if he never moved again. But as much as he yearned to believe it, Brooke's subsequent experiences—spasms, pain, catheterizations, bouts of pneumonia, infected abscesses in his groin—have made him wary of platitudes. He still wants to believe the mind is everything. But he has learned that no mind can fly free of a useless body's incessant neediness.

 

One gray morning in February, more than four years after the accident, I met Brooke and Peggy at their home in the Salt Lake City neighborhood known as the Avenues. Brooke rolled into the living room in his motorized wheelchair. It was a month before his seventy-first birthday, and his handsome face was animated by intense, shiny brown eyes, deep-set under a bristly awning of brow. He was dressed as usual: a pullover, polyester pants that snap open all the way down each leg, a diaper, and green Crocs. A friend was reading on a couch nearby, a caregiver was doing her schoolwork in the kitchen, and Peggy had retreated upstairs to her office amid towers of papers, books, and magazines. She had finally gained some momentum on a project that was slowed by Brooke's accident: a compendium of philosophical writings about suicide, dating as far back as Aristotle.

Peggy, who is seventy-two, still works full-time. This lets her hold on to the university's excellent health insurance, which covers a large portion of Brooke's inpatient care and doctor bills, with Medicare paying most of the rest of them. But even with this double coverage, Peggy spends a lot of time arguing with insurance companies that balk at expenditures like his $45,000 wheelchair. And she still pays a huge amount of the cost, including nearly $250,000 a year to Brooke's caregivers, twelve mostly young and devoted health care workers, who come in shifts so there's always at least one on duty. Peggy says she and Brooke were lucky to have had a healthy retirement fund at the time of the accident, but she doesn't know how many more years they will be able to sustain this level of high-quality twenty-four-hour care.

Scattered around the living room were counter-height stools that Peggy picked up at yard sales. She urges visitors to pull them up to Brooke's wheelchair, because he's tall and the stools bring most people to eye level. About two years ago, Brooke used a ventilator only when he slept, but following a series of infections and other setbacks, he was now on the ventilator many of his waking hours too, along with a diaphragmatic pacer that kept his breathing regular. Earlier that morning his caregiver had adjusted the ventilator so he and I could talk, deflating the cuff around his tracheostomy tube to allow air to pass over his larynx. This let him speak the way everyone does, vocalizing as he exhaled. It seemed to tire him, though; his pauses became longer as our conversation went on. But whenever I suggested that we stop for a while so he could rest, Brooke insisted that he wanted to keep talking.