CHAPTER 4

AS I WOKE, THE SUNLIGHT, FILTERING IN THROUGH THE bedroom window, shimmered across the floral quilt and hit my eyes. I raised myself languidly onto my elbows. Distant gagging and ripping sounds trickled through the windows. But that was only the raving of crows and the downshift arpeggios of trucks, scattered voices of summer. I dropped back onto the bed with a groan. I used to feel a sensuous joy in waking up, sometimes slithering around in bed for a few moments, just taking pleasure in having limbs that glide in different directions, and enjoying the feel of the soft warm sheet under my shoulders, before padding across the ridged carpet in bare feet to a skylit bathroom, where I was greeted by teal and lavender tiles and a wallpaper motif of peacocks and trees of life.

Now I woke in a state of anxious hurry, rushing to wash and dress, while worrying about how Paul might have passed the night and what momentum, if any, his brain might have gained. The idea of breakfast simply didn’t occur. Driving to the hospital with a dry metallic taste in my mouth, I felt as if the minerals were leaching out of my bones. I wanted somehow, miraculously, to right the wrongs in Paul’s head. But, at the same time, I didn’t want ever to arrive and face the helplessness and emotional turmoil that awaited me. Between those two fates, the miles evaporated and I found myself turning into a woodsy parking lot, forgetting to lock my car door, lumbering into the building without a sense of walking.

At first it was easy to get lost in the hospital’s maze of shiny hallways linking whole neighborhoods of rooms and winding past departments called Emergency, Imaging, Intensive Care, that appeared out of the fluorescent dusk like brightly lit upstate towns. Hadn’t I just passed the cafeteria and kitchen? Where was the Rehab Unit? I pressed on, entering hallways that narrowed and widened and narrowed again, branching like a well-lit circulatory system.

Quietly, sometimes unawares, I found myself slipping into my naturalist’s way of knowing, coping by detaching myself enough to appreciate the ecology of the medical world I was traveling through, rather than being totally overwhelmed by it and drowned. No, this other sense of lost was what I needed. How coolly the brain obliges, and isolates, compartmentalizes, shifting its gaze from one hub of action to another, composing the tone poem of a different mood, when need be, or running a bold new face up the flagpole.

Disassociating, mindfulness, transcendence—whatever the label—it’s a sort of loophole in our contract with reality, a form of self-rescue. Linked neurons, firing like sparklers, make the sudden change feel seamless, and seemless. One network dims as another wakes to high noon. Both stay wired and ready to serve, like unheated spare rooms in a large old Victorian mansion. Why expose them all to scrutiny? Be rational about religion? Too scary; hide religion from critical thought. Apply human codes of ethics to how we treat animals? A slippery slope; don’t stroll there. Agonize nonstop about Paul’s stroke? It would fry the wiring; transcend if possible. Lose yourself in nature’s dens and crevasses, and turn the key on heartache. When you can’t, toss drop cloths over everything, lower the heat to save energy, and allow a sedated overseer to take charge. Drift on autopilot. Just go through the motions.

As I continued down unfamiliar corridors, white-robed people, green people in green mushroom-shaped hats, and people pushing patients on beds all passed in slow motion. But in the firmament of fluorescent lights overhead, excited atoms were shooting electrons into higher orbits far from their home, where they paused for a tiny fraction of a second too quick to imagine, almost immediately tugged back down again. Falling toward their hub, the electrons released extra energy as photons of light. Walking down an endless hallway, I smiled glumly, feeling far from my own center.

Everything about this Oz took getting used to: the uniforms, dialect, climate, food, geography, machinery, protocols, hierarchies, and low ambient sounds of whirring, squealing, gnashing, and incessant beeping. Stricken families were duty-bound to learn enough of its culture to speak with the natives and help a loved one survive. So it felt right that I needed to cross a bridge en route to the hospital, and another bridge walking from the parking lot to a set of space-age doors that saw me coming and sprang open, let me pause a moment inside a toasty vestibule, before the inner doors glided open, ushering me into a world apart, one with chilly corridors and overexcited atoms.

A FEW DAYS post-stroke, Paul now seemed to recognize a spattering of words, yet he was still woefully confused. I kept waiting for him to rebound, but the signs were ominous as I played them over in my mind. He couldn’t read the newspaper or tell time by the large clock on the wall. He couldn’t drink without choking. He couldn’t do basic addition. When he tried to stand, he surprised himself by how wobbly he was. He needed to be retaught how to sit in a chair, use the toilet, work the taps in the bathroom, shave, walk without weaving or falling. The fourth and fifth fingers on his right hand had curled into a claw. But most of all, there was the aphasia. Although he was able to make some of his feelings known through facial expressions and gestures, he was frustrated and furious that no one could understand his gibberish when it clearly made sense to him. He didn’t know his own name or mine, and kept gesturing wildly that he wanted to go home.

While I watched, Kelly, a petite and cheerful blond speech therapist, stood beside his bed and calmly tested his mouth and throat muscles, showing him by example how she wanted him to move his jaw, tongue, lips. The right side of his face still drooped, but he could stick out his tongue and push it around his mouth like a wayward eel. If she scrunched up his lips he held a pucker, but he couldn’t pucker his lips by himself.

On her chart, Kelly noted that Paul answered simple yes/no questions—“Are you in bed? Is this a hospital?”—by nodding, with 80 percent accuracy. But his responses were accurate less than 25 percent of the time when she asked him to do simple things. When he was shown two objects and asked to point to one of them, he always pointed to the object on his left. If she asked him to say “Aah,” he followed the command only 30 percent of the time. She jotted down:

Unable to repeat single syllable words.

Did not name common objects.

No functional verbal communication.

When asked to sing/count along with me, opened mouth very

wide, intermittent voicing, but no articulation despite some

movement of the lips.

His inability to respond seemed unreal, and though I wanted to cry, I forced myself to watch. She handed him an 8-by-10-inch communication board, covered with drawings of common items or actions, and asked him to point to the objects she named—a key, a clock, a child—but he was unable to. She showed him an alphabet board and asked him to spell his name. Mutely observing his struggle, I felt my hope dissolving, as if touched by acid. His Oxford First and fifty-one published books meant nothing now. He couldn’t spell his own name. When she wrote down Raise your hand, he opened his mouth wide and made a strange low murmuring as if trying to read out loud. Most poignant of all, when she handed him a pen, the tool he’d wielded with mastery throughout his career, one I’d associated with him the way one links seahorses with ocean, he tried to hold it in his weak right hand and it slipped from his grip. Kelly suggested his left hand, but he didn’t try. She offered him a thick crayon and blank sheet of paper.

“Can you write your name?”

With difficulty, starting and stopping several times, Paul scrawled P-O-O-P.

Somehow managing to look both nonplussed and mystified, Kelly asked: “Do you need to use the toilet?”

He tilted his head blankly, the way animals sometimes do when they’re puzzled. So I pointed to the bathroom and asked slowly, “Toilet?”

Surprised, he shook his head no.

Her evaluation read:

Oral apraxia. Severe apraxia of speech.

Expressive and receptive aphasia.

Dysphagia with risk of aspiration.

Translated, it meant: my Paul couldn’t coordinate the movements of his jaw, tongue, and lips (apraxia). He had the worst degree of trouble saying what he wanted to, or understanding what people said to him (expressive and receptive aphasia). And a swallowing problem put him at risk of aspiration (dysphagia). Soon after his stroke, an X-ray video evaluation of Paul swallowing barium-coated fruit, crackers, and apple sauce had shown that he was silently inhaling particles into his lungs. When asked to cough, he couldn’t flex his throat muscles enough to cough the particles out. Silently aspirating. Sowing the seeds of possibly deadly pneumonia without any feeling that food had gone down the wrong pipe.

Kelly explained he could rule the liquid only when it was in his mouth. After that pure reflex is supposed to take over. When we swallow normally, a valve opens, allowing food to enter the esophagus, while closing the windpipe to prevent food from blocking the airway. This reflexive combo happens in less than half a second. But a stroke, especially one that produces slurred speech, can weaken the throat’s muscles. Thicker fluids or solid food flow lava-slowly and are easier to guide with drab muscles and dulled reflexes, lessening the chance of dripping fluid into the wrong tube. The hospital’s levels of thickened liquids were termed: nectar, honey, pudding.

“Pudding-thick only,” Kelly decreed. For a while at least, all liquids would be mixed with a powder called Thick-It, that smelled like a dry cast-off chrysalis and tasted gray, added until a spoon could stand up in the liquid. For Paul, clear water only if thickened to sludge. No milk, his favorite drink. No refreshment from a sparkling fizzy sip of Dr. Brown’s Diet Cream Soda. Nothing thin enough to quench a thirst.

You’d think choking would have stood out as the scariest assessment, but what shattered me was the note: “No functional verbal communication.” The stroke had done far more than damage his ability to read, write, or talk—his brain no longer wanted to process language at all. Yet I hoped to take him home sometime soon.

What on earth will going home be like? The thought pinwheeled through my head. Sad ghosts? A shrivel of silence in his study? Not even the clacking of typewriter keys? Or will I hear a plaintive stream of “mem, mem, mem”? How will I be able to look after him at home? I’d grown used to our household of two adults. What would life be like having him at home and handicapped, in need of supervision, unable to communicate his desires in words, and full of tantrums as a result?

Kelly and I left Paul to rest and we sat on chairs in the hallway to confer. She recommended further swallowing studies to monitor for signs of improvement, and also speech therapy five days a week.

“In terms of language,” I asked tentatively, “what do you think?”

She paused a moment to frame her thoughts, as fluorescent light showered down on us like silently accumulating snowfall.

“Long-term, I hope he’ll be able to communicate his basic wants and needs,” she said slowly, allowing time for the words to sink in, “verbally or in gestures or maybe using a communication board, with about 80 percent accuracy.”

Basic wants and needs, I heard her say. Basic wants and needs. The phrase spun in my mind. As if that could ever be enough for normal people, let alone word-besotted creatures like us. Life lives in nuances and innuendos. How could Paul’s immense cosmos of words shrink to the size of a communication board overnight? How could ours?

“Short-term,” she continued with maddening practicality, “we’ll be striving for about 50 percent accuracy in naming common objects. I’d like him to be able to choose between two items, when you name them, about 80 percent of the time, and follow simple commands with 80 percent accuracy.”

Would you like the “pants” or the “shorts,” the “pillow” or the “blanket”? That would be life from now on? My thoughts spiraled, and I felt not just psychic pain, but a specific ache I could locate in several muscles between my ribs. Global aphasia. Woundingly right. Our couple, DianeandPaul, had been a ghostly continent of two countries. What would become of it? Would a boundary of silence fall between us? No more Paul touching voices by telephone many times a day when I traveled? No more Paul calling to me across the hallway, “Poet, what’s a word for . . . ?” No more Paul tucking me in at night and leaving refrigerator notes in the morning? No more confiding, whispering intimacies, playing with words, sharing the world? It’s beastly, I thought, completely unthinkable. And if he couldn’t read or work, what would he do all day? Probably want me to keep him company—and that was understandable—though devastating to my work, my freedom. I would need to be able to write for my own joy and sanity, but also now to support the household and help pay for Paul’s care. Still, I felt deeply ashamed to be indulging in such self-centered worries.

When Kelly left, I went to a windowed alcove just beyond the Rehab Unit doors and wept. Out of shame that I couldn’t fix things, and out of grief. I’d never before had to mourn for someone who was still alive. I mourned for Paul, and I also mourned for myself, and for the loss of the word-drenched companionship we’d created, due to a tiny land mine traveling through his blood vessels. Beneath our civilized hair and hide, and beneath awareness even, we easily destroy ourselves. To be so godlike, and yet so fragile. But it didn’t help to lump him with the rest of humanity. The loss was too intimate. It had settled in like a lonely lodger with a scrapbook of memories.

For example, this was Sunday, a day when, before the stroke, Paul usually viewed one, sometimes two, English premier-league soccer matches on television. I remembered a conversation we’d had ages before, when I was hanging out at Giants Stadium, home of the New York Cosmos soccer team, which had collected a peerless array of international players. I’d agreed to write several articles, and was deeply embedded in the soccer world, absorbing atmosphere for a novel. In the press box during halftime, I’d phoned Paul and found him in a sort of halftime, too, in his office between seminars, eating a can of smoked kippers.

“What’s up?”

“Oh, nothing much,” he’d answered without missing a beat. “The usual struggle for survival with its attendant erosion of moral standards and so on.” A mouthful of fish and hungry chewing. “What’s new with you, doll?”

“I’m going to Bakewell to interview the tarts,” I’d teased. “Actually, I thought I’d go to the Cosmos’ training camp in the Bahamas and interview Beckenbauer.”

Franz Beckenbauer, the smart, elegantly sexy player who somehow managed to combine grace, precision, and power. Whenever I watched him gather the urgent rhythms of a game, a mental depth charge went off inside me.

At this, Paul had laughed so loud that I worried he’d drop the phone.

“Strictly business,” I’d insisted. “I want to ask him about the ceremonial violence of the game. I know he’s a big opera fan—maybe the two connect for him. You know, what he hears and sees while he’s playing. Stuff like that.”

“It’s bad enough you want me to believe you’re being honest with me,” Paul had said with an edgy twinkle in his voice, “I’m also supposed not to notice when you’re not telling me the truth.”

“If you always tell the truth, you never get into trouble,” I’d replied with as much innocence as I could muster.

“Or if you always lie,” he’d countered.

“Okay, so I’ll be having some fun, too. What can I tell you, I’m in love.”

“With him?”

“With the game, silly.”

“Which game?”

“Soccer!”

“What does soccer have to do with the game?”

“Where did I take the off-ramp from this conversation? Which game are you talking about?”

“Which game are you talking about?”

“Ahh,” I’d said slowly, “I see. Well, I’m not sure.”

“Don’t let me know when you find out; I love you as unfathomable as you are.” The sound of ice tinkling in a glass, as he drank the evening’s first scotch.

“Not even a telegram from the Bahamas?”

“What could it say in under fifteen words?”

“. . . How about habeas porpoise?”

What a crazy season that had been, splitting my focus between teaching rarefied graduate poets and following the exploits of men whose genius was physical. I never did go to training camp in the Bahamas, never did finish the soccer novel. But Paul shared my enthusiasm for soccer, and we often watched games together on television, sometimes spreading a blanket on the floor and eating a store-bought rotisserie chicken with yellow mustard and canned asparagus, our “soccer picnic.”

With a tender smile, I eased the memory from the heavy slate of my mind.

In the hallway, a table passed on which metal instruments inside a gleaming bowl rattled with a sound like machine-gun fire. Somehow its bleakness shook me out of my mournful trance. At least I could still give comfort and affection, that part remained. But was there any hope he might recover?

I knew from my studies that what we used to think about the brain—that it’s immutable and we’re born with all the brain cells we’ll ever have—was wrong. Brains are surprisingly resourceful, they can adapt and grow, forge new neural pathways, redirect signals, and sometimes even mint a handful of fresh neurons. Unless damaged beyond growth or repair. Could anything be done? Clots had stopped oxygen from reaching the deep, central language areas of Paul’s brain—cells had suffocated and died. “Time is brain,” the medical adage goes. During every minute without oxygen, a plot of brain loses 1.9 million neurons, 14 billion synapses, 7.5 miles of protective fibers. After only twelve minutes without oxygen, a pea-sized chapter of brain dies. His body was still alive, but his mind was a specter of itself. Yet these were early days, his brain was still swollen and inflamed from the stroke. As the neurons cooled, survivors might stir among the wreckage.

To keep my spirits up, I often reminded myself of the brain’s plasticity, how it can modify itself, effloresce, revise its habits, unearth new skills. Throughout our lives, whenever we learn something, the brain creates connections or revives old pathways, neurons grow new twigs along their branches and some of the branches themselves become stronger. A brain can rewire itself. We do it all the time when we become doctors, master the bicycle, or learn to use an iPod. Expert violinists develop more motor cortex for the busy left hand than for the right. London taxi drivers increase the size of their hippocampus from memorizing thousands of routes around the city. But how often does a violinist have to perform a tricky movement’s many parts before really nailing it? Probably hundreds of thousands of times. After all, they practice for several hours every day for years. Learning how to ride a bike or drive a car or even pilot a space shuttle doesn’t require as much rehearsal.

Learning most things by rote, the brain keeps digging at something until it creates a channel along which messages can flow. How spiritless and stale that can be, how wearisome and boring. Or how seductively exciting, if it’s something you love. A born acrobat, the brain schools itself, becomes its own taskmaster. That takes focus, industry, and muscle. Not everyone can be bothered. Others haven’t the zest to try. A college athlete, Paul grasped the piety of training day in and out. And as someone who halfheartedly practiced violin when I was a girl (and never got past the stage of sounding like I was torturing small creatures), I knew the diligent rigor every victory would take. As if it were an ancient Greek god, I begged the spirit of Plasticity, the brain’s knack of changing as it learns, to rewire itself based on all of Paul’s efforts. Press a hand into clay and the clay changes to record the shape of the hand. Photograph a hand and the film changes to retain the image of the hand. From daily pressure and exposure, Paul’s brain might change itself, probably by reassigning some lost language skills to surviving neurons. How long would that continue, I wondered, and, more importantly, how much ground could he regain?

For now, the only remnant of language he had was the one solitary syllable: “Mem, mem, mem.” He groaned it, he whispered it, he uttered it civilly as a greeting, he barked it in anger, he solicited help with it, and finally in frustration, when none of that worked, he sat upright in bed and spat it out as a curse.