The Best American Science and Nature Writing 2014 (12 page)

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.

 

He had had thoughts like this before, but this time it felt different to Peggy, who proofread and typed the letter; the longing for death felt like something carefully considered, something serious and sincere. This was an autonomous, fully alert person making a decision about his own final days—the very situation she had spent her career defending. She reasoned that Brooke had the right, as a mentally competent patient, to reject medical interventions that could further prolong his life, even though he did not live in a state where assisted suicide was explicitly legal. And if he wanted to reject those interventions now, after four years of consenting to every treatment, Peggy was ready to help. She shifted from being Brooke's devoted lifeline to being the midwife to his death.

She knew from a hospice nurse that one way to ease a patient's dying included morphine for “air hunger,” Haldol for “delusions and end-of-life agitation,” and Tylenol suppositories for “end-of-life fever, 99 to 101 degrees.” Another nurse mentioned morphine, Haldol, and the sedative Ativan; a third talked about Duragesic patches to deliver fentanyl, a potent opium alternative used for pain. Peggy also tried to find out whether cardiologists would ever be willing to order deactivation of a pacemaker at a very ill patient's request (probably, she was told). She kept pages of scribbled notes in a blue folder marked “Death and Dying.” She had also taken careful notes when Brooke started to talk about his funeral. He told her what music he wanted, including a few gospel songs by Marion Williams, and which readings from Wordsworth's “Lucy Poems” and Whitman's
Leaves of Grass.
On his gravestone, he might like a line from Henry Adams: “A teacher affects eternity; he can never tell where his influence stops.” These were good conversations, but they left him, he told Peggy, “completely emotionally torn up.”

Then in early August, fluid started accumulating in Brooke's chest cavity, a condition known as pleural effusion, and he had trouble breathing, even on the ventilator. He was uncomfortable and becoming delirious. Other people, including a few of Brooke's caregivers, might have seen this as a kind of divine intervention—a rapid deterioration just when Brooke was longing for death anyway, easing him into a final release. But that's not how Peggy saw it. This was not the death Brooke wanted, confused and in pain, she explained to me later; he had always spoken of a “generous death” for which he was alert, calm, present, and surrounded by people he loved. So she consulted with a physician at the hospital about whether Brooke would improve if doctors there extracted the fluid that was causing the respiratory distress. In the end, she decided to ignore the “Final Letter.” She went upstairs, got dressed, and, along with the caregiver on duty, put Brooke into the wheelchair-accessible van in the driveway and drove him to the emergency room.