by Deborah Blum
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.
What he wanted to talk about was how depressed he was. He recognized the feeling, having struggled with bipolar disorder since adolescence. “It takes a long time to get ready for anything,” he said about his life now. “To get up in the morning, which I kind of hate, to have every day be more or less the same as every other day . . . and then to spend so much time going to bed. Day after day, day after day, day after day.”
Brooke has good days and bad days. When friends are around playing blues harmonica or reading aloud to him, when his mind is clear and his body is not in pain—that’s a good day. On a good day, he said, he feels even more creative than he was in his able-bodied life, and his relationships with Peggy, his two stepchildren, and his many friends are richer and more intimate than before; he has no time or patience for small talk, and neither do they. Every so often he’ll turn to Peggy and announce, “I love my life.”
On a good day, Brooke’s voice is strong, which lets him keep up with reading and writing with voice-recognition software. A caregiver arranges a Bluetooth microphone on his head, and he dictates e-mail and races through books by calling out “Page down” when he reaches the bottom of a screen. On a good day, he also might get outside for a while. “I like to take long walks, quote unquote, in the park,”
he told me. “There’s a graveyard somewhat lugubriously next to us that I like to go through,” pushed in his wheelchair by a caregiver with Peggy alongside. A couple of years ago, he and Peggy bought two plots there; they get a kick out of visiting their burial sites and taking in the view.
But on bad days these pleasures fade, and everything about his current life seems bleak. These are days when physical problems—latent infections, low oxygen levels, drug interactions, or, in a cruel paradox of paralysis, severe pain in his motionless limbs—can lead to exhaustion, depression, confusion, and even hallucinations. As Brooke described these darker times, Peggy came down from her office and sat nearby, half-listening. She has bright blue eyes and a pretty, freckled face fringed by blond-white hair. Most days she wears jeans and running shoes and a slightly distracted expression. She takes long hikes almost daily, and once a week tries to squeeze in a Pilates session to help treat her scoliosis. Each body harbors its own form of decay, and this is Peggy’s; the scoliosis is getting worse as she ages.
She walked over to us, bent crookedly at the waist, and gently kissed Brooke’s forehead. “Depression is not uncommon in winter,” she said in the soft voice she almost always uses with him. “It’s important to think positive thoughts.”
“Basically I dislike being dependent, that’s all,” he said, looking hard into her eyes. He spit some excess saliva into a cup.
“It’s something you never complain about,” she said. “You’re not a big complainer.”
“One thing I don’t like is people speaking for me, though.”
Peggy looked a bit stung. “And that includes me?” she asked.
“Yes,” he said, still looking into her eyes. “I don’t like that.”
She made an effort not to get defensive. “Well, sometimes that has to happen, for me to speak for you,” she began. “But . . . but not always. I try not to.”
Brooke seemed sorry to have spoken up; it was clear he didn’t want to hurt her. “I’m trying to be as frank as possible,” he said.
“No, it’s good,” she assured him, her protective instincts clicking in. “It helps me for you to say that, to tell me what you would have wanted to say instead.”
All Brooke could muster was a raspy “Yep.”
“The most important thing is to not speak for someone else,” Peggy insisted.
“Yep,” Brooke repeated. “What I want to do most right now is be quiet and read.” So Peggy and I left him in the living room, where the big-screen monitor was queued up to Chapter 46 of Moby-Dick. “Page down,” he called out, forced to keep repeating it like a mantra because his speech was croaky and the software had trouble recognizing the phrase. “Page down. Page down.”
For Brooke, what elevates his life beyond the day-to-day slog of maintaining it—the vast team effort required to keep his inert sack of a body fed and dressed and clean and functioning—is his continuing ability to teach part-time through the University of Utah’s adult education program. During my February visit, I sat in on one of his classes, which he teaches with Michael Rudick, another retired English professor from the university. Some two dozen students, most over sixty, crammed into Brooke’s living room for a discussion of Moby-Dick. Conversation turned to the mind-body problem. “Melville is making fun here of Descartes, as though you could exist as a mind without a body,” said Howard Horwitz, who teaches in the English department and was helping out that day.
Brooke seemed exhausted and sat quietly, impassive as Buddha, as his ventilator sighed. At one point a student called out to ask what Brooke thought about a particular passage. He responded with an oblique “I’d much rather hear what you think,” and was silent for the rest of the class. The discussion continued with the two other professors taking charge. There was an almost forced animation, as if the students had tacitly agreed to cover for a man they loved, admired, and were worried about.
When Peggy arrived late—she was at a meeting on campus—Brooke flashed her one of his dazzling smiles. His eyes stayed on her as she positioned herself near an old baby grand that hugs a corner of the living room, a memento from Brooke’s parents’ house in Baltimore. Above the piano is a huge painting that Peggy got years ago, a serial self-portrait of a dark-haired figure with a mustache—six full-body images of the same man in various stages of disappearing.
“He’s never looked this bad,” Peggy whispered to me during the break as students milled around. She went to Brooke and kissed his forehead. “Are you OK?” she asked softly.
“I’m fine,” he said. “Don’t worry.”
They have this exchange a lot: Peggy leaning in to ask if he’s OK, Brooke telling her not to worry, Peggy worrying anyway. Quietly, so the students wouldn’t hear, she asked the respiratory therapist on duty, Jaycee Carter, when Brooke last had his Cough Assist therapy, a method that forces out mucus that can clog his lungs. “Three hours ago,” Jaycee said. But Brooke said he didn’t want it while the class was there: it’s noisy, and it brings up a lot of unsightly phlegm. As students started to head back to their seats, Peggy lit on a more discreet alternative: a spritz of albuterol, used in asthma inhalers to relax the airways, into his trach tube. Jaycee stood by awaiting instructions, Brooke kept shaking his head—no albuterol, not now, no—and Peggy kept insisting. At last, annoyance prickling his expressive eyebrows, he gave in, and Jaycee did as she was told. But the albuterol didn’t help.
Peggy retreated to the piano as the class resumed, her eyes brimming. “This is bad,” she murmured. “This is really bad.” Underlying her anxiety was a frightening possibility: that Brooke’s inability to teach that day was the start of a progressive decline. Up until then, his occasional mental fogginess was always explained by something transient, like an infection. But if he were to lose his intellectual functioning, he would be robbed of all the things that still give his life meaning: teaching, writing, and interacting with the people he loves. If that day ever came, it would provoke a grim reckoning, forcing Brooke to rethink—provided he was still capable of thinking—whether this is a life worth holding on to.
After class, Jaycee wheeled Brooke to the dining area so he could sit with Peggy and me as we ate dinner. Brooke doesn’t eat anymore. Last August he had a feeding tube inserted as a way to avoid the dangerous infections and inflammations that were constantly sending him to the hospital. If he doesn’t chew, drink, or swallow, there’s less chance that food or fluid will end up in his lungs and cause aspiration pneumonia.
In his prior life, Brooke couldn’t have imagined tolerating a feeding tube; he loved eating too much. In fact, when he updated his living will in 2007, he specifically noted his wish to avoid “administration of sustenance and hydration.” But the document had a caveat found in most advance directives, one that has proved critical in negotiating his care since the accident: “I reserve the right to give current medical directions to physicians and other providers of medical services so long as I am able,” even if they conflict with the living will.
Thus a man who had always taken great joy in preparing, sharing, and savoring food decided to give up his final sensory pleasure in order to go on living. He swears he doesn’t miss it. He had already been limited to soft, easy-to-swallow foods with no seeds or crunchiness—runny eggs, yogurt, mashed avocado. And as much as he loved the social aspects of eating, the long conversations over the last of the wine, he managed, with some gentle prodding from Peggy, to think of the feeding tube as a kind of liberation. After all, as she explained on the family blog, Brooke could still do “almost all the important things that are part of the enjoyment of food”—he could still smell its aroma, admire its presentation, join in on the mealtime chatter, even sample a morsel the way a wine taster might, chewing it and then discreetly spitting it out. Maybe, she wrote, “being liberated from the crass bodily necessity of eating brings you a step closer to some sort of nirvana.”
Or as Brooke put it to me in his unvarnished way: “You can get used to anything.”
Brooke
kept nodding off as he sat watching us eat—the class had really drained him—but Peggy kept him up until nine o’clock, when his hourlong bedtime ritual begins. After Jaycee took him to his room, she and the night-shift caregiver hoisted him from his wheelchair and into the bed using an elaborate system of ceiling tracks, slings, and motorized lifts; changed him into a hospital gown; washed his face and brushed his teeth; emptied his bladder with a catheter; strapped on booties and finger splints to position his extremities; hooked him up to the ventilator; and set up four cans of Replete Fiber to slowly drip into his feeding tube as he slept. The ritual ended with what Brooke and Peggy think of as the most important part of the day, when Brooke finally is settled into bed and Peggy takes off her shoes and climbs in, too, keeping him company until he gets sleepy. (Peggy sleeps in a new bedroom she had built upstairs.) There they lie, side by side in his double-wide hospital bed, their heads close on the pillow, talking in the low, private rumbles of any intimate marriage.
Throughout the first half of last year, Brooke had severe pain in his back and legs, and all the remedies he tried—acupuncture, cortisone shots, pressure-point therapy, nerve-impulse scrambling—were useless. At one point last summer, he decided he couldn’t go on living that way. “Pain eats away at your soul,” he wrote on July 28, 2012, using his voice-recognition software to dictate what he called a “Final Letter” to his loved ones, explaining why he now wanted to die:
For many years since the accident I have been motivated by a deep will to live and to contribute to the benefit of others in my small way. I think I have done that. And I am proud of it. But as I have told Peggy over the past few months, I knew that I would reach a limit to what I could do. And I have arrived at the limit over the past couple of weeks.
