CHAPTER 11

ON A SUNNY MORNING IN LATE JUNE, I FOUND PAUL sitting on the edge of his bed, waiting for me, looking eager and excited. I’d seen this look before. He was perched like a professor with a train to catch, and despite his hospital gown, I could picture him in a bow tie and tweed jacket.

“I have . . . s-s-surprise,” he spluttered with some effort.

“You have a surprise for me?”

Smiling proudly, he straightened his shoulders, lifted his chin, took a slow, deep breath, then proclaimed, “I speak good coffee!”

“You speak good coffee?” I must say I was a bit bewildered.

He nodded yes. “I speak good coffee,” he repeated.

“Coffee?” I asked, eyebrows raised like Tudor arches, signaling,

Are you really sure—coffee?

“No,” he said, laughing, “I speak wonderful English!” And so he did.

“There’s big difference!” he said gingerly. Overnight he had indeed improved, even more than he was aware of. Since the stroke, I’d never seen him so excited, so hopeful, so fluent.

“You’re talking!” I gushed. “Well done!” We grabbed hands and squeezed hard. For a few more moments we talked, or rather he talked, almost normally, words handy and obedient, pouring out slowly. I found them refreshing as well water.

Kelly arrived on her usual schedule, and with an eager smile I informed her: “Paul has a surprise for you this morning—he’s speaking much better.”

But when she greeted him he clammed up, as if shy. Part of aphasia’s bane is difficulty speaking on demand. Off-the-cuff, unpremeditated replies (“Was it really?”), uttered before he realized it, could sidestep the aphasia and flow much more easily. Kelly whisked him away for thirty minutes of speech therapy and another swallowing evaluation, while I remained in his room with his checkbook and bills, to catch up on bookkeeping. Paul had always kept track of half the household expenses, and despite the chaos I needed to find all the outstanding bills and make sure they were paid. As I sat by the window, I watched the clouds shape-shift over the lake, briefly recognizable at times—train, camel, long-horned antelope—because my brain’s interpreter kept trying to ID them. Was that still happening in Paul’s brain, or was his interpreter too wounded to care?

More typically, Paul came out with many sentence fragments, but was cruelly frustrated and dissatisfied with them. He could write his name legibly only in big block letters. I still greeted this with relief, as if he had somehow reclaimed a tiny fraction of himself with those four letters. Not P-A-U-L, but the spiral font encrypted in his cells. Or the foursome that buoys one up: H-O-P-E. And during speech therapy, when Kelly asked him to tell her something about himself, he thought for a moment, opened his mouth wide as if he were testing rusty old machinery, and finally said: “Many books . . . We go . . . Fl-florida . . . for fourteen, no one hundred forty, no fourteen, no four months,” and “Swim.” Then he shook his head at the woefully incomplete answer.

At breakfast, scrambled eggs tripped down his windpipe and he coughed violently, retching as if he were trying to expel his stomach. When he drank a little thickened milk from a cup, he uttered a cough so flannel-thick and long that it scared me. He looked terrified. Unflappable, Kelly coached him how to cough from deep in his diaphragm, while leaning forward, until he spat the milk up out of his airways, spraying white like some venomous snakes. Then she spent a long while explaining—yet again—his swallowing danger, why he had to sit up straight while he ate, why he should swallow each bite of food before putting another in his mouth, why his drinks had to be thickened. She taught him to do tongue sweeps after swallowing, to make sure that he didn’t still have food tucked in a numb corner of his mouth. Nodding solemnly, Paul responded as if hearing it all for the first time, not the umpteenth, and I saw how much trouble his brain was having storing short-term memories.

Long-term memories were another cat entirely. Because it takes the brain a while to store a long-term memory—sometimes days—and his injured brain wasn’t fully back in the memory-storing business yet, I knew he probably wouldn’t remember any of this hospital time at all. Only I would. That startled me. Never before did I have to store someone else’s trauma—not only live it at my own cost, as real gut-wrenching, but also replay it later when he asked what happened to him, as inevitably he would. I felt oddly like I was taking over some of Paul’s higher brain functions (decision-making, interpreting, memory storage), shouldering the mental burden and adding it to my own. One brain laboring for two.

Not a complete novelty. Despite feeling separate, our brains regularly assign various functions to others: teachers, nannies, doctors, policemen, farmers, et al. And cede momentous and trivial work to spouses every day. You do the taxes, I’ll work on the loan application. You do the grocery shopping, I’ll take the cat to the vet. You handle the garden, I’ll mow the lawn and shovel the snow. I’d always been the one who organized our travel to Florida, run the house, hired workmen. Usually I was aided by lists on paper or computer, grateful for the handy and uniquely human gift of being able to store information outside of the brain. But this was a whole new order of magnitude and of stress. I could barely remember the details of my own life and be responsible for my own fate. I wondered how much that contributes to “caregiver stress,” heaping a brain with more executive tasks than it was designed to handle?

I felt pain in my fingertips, stomach, and toes. What a heartbreaking struggle for him. How would I fare with only a rat’s nest of wrong words, an irregular heart pinwheeling in my chest, limbs tired old barn slats, the dregs of Thick-It in my mouth, senses screwy as fun-house mirrors, unable to swallow safely or dress myself, imprisoned in a noisy castle light-years from home, keyless and clueless, prickled by strangers, apocalyptically bored, and without even the words to file a petition because some fiendish constabulary raised Cain every time I spoke? And what if, no matter what I said, or how—cogently and coherently, with old-time finesse, it seemed to me—no one understood?

I couldn’t imagine being in his shoes for a day, let alone weeks . . . and a lifetime? Horror of horrors, what if it were a lifetime? Could I stay buoyant in the maw of such tragedy for so long? I didn’t think so. Don’t jump the gun. And don’t let on, I thought. Catching my breath, I tried to calm myself long enough to calm him.

After Kelly left, with great sadness Paul presented me with a mangled aphorism: “The word man is perhaps not the right one for the thing I see when I hear it.”

“Not now, anyway,” I said, “but keep trying. You’re speaking, that’s the main thing. . . . I know how exhausted you must be. How about a nap?”

While Paul slept, I blearily went downstairs to the cafeteria, a large room containing deli & grill, salad and soup bar, refrigerated grab-and-go foods, which opens out into a dining room with polished wooden tables, and many windows. It had been too stressful a morning, and I could feel the fabric of my being fraying. I needed a respite, the solace of losing myself once more in an equally real way of knowing, but one less devastating. I felt my mind begin to float, and the naturalist step out of the shadows and search for an agreeable tableau: lower parking lot with colorful metal carapaces gleaming in the sun; the front-door procession of people with faraway expressions; a small grassy bank and bench beside a purring creek; other diners. My eyes were drawn upward. Designed with sweeping arcs and many round inset lights, the ceiling seemed to display the starlit arms of galaxies. Not by design, I thought, but abstractly, as a kind of archetype of the night sky, a familiar sight the brain encodes from childhood and tells time by, or uses to chart its way through the world. I smiled. Even in a hospital cafeteria, we bring nature indoors with us, can’t help but surround ourselves with its forms. A faint harmonious music hovered in the air, nothing loud or intrusive or even identifiable enough for my brain to puzzle over. Why do we need to fill the air with sound? Maybe because, in our deepest imaginings, we’re more at home with the ambient sounds of nature. I was glad of such renegade thoughts, which tugged my mind far away from Paul and his illness. As the crust of my world continued cracking I needed more and more time-outs. Another one soon presented itself:

I shared the elevator with a female volunteer pushing a small wooden bookcase on wheels. A glance at the titles made it clear they were meant for casual readers who needed a little gem to engross them or pass the time, but nothing they wouldn’t mind leaving unfinished. The lowest shelf was full of slender children’s books with shiny colorful covers. I felt a wash of nostalgia, and then my mind leapt through long-dormant synapses and memory alleys to something I hadn’t thought about in years—the bookmobile, which had stopped only two blocks from my house in suburban Illinois when I was seven years old. Aladdin’s cave on wheels, it had looked like an unassuming trailer or bus, but inside the walls were lined with shimmering volumes that smelled of wood shavings, silver polish, and dust, just like a real library. It had solid glossy wooden shelves, a card catalogue, and moveable steps for browsing the higher books. I couldn’t reach them anyway, since the steps only added three feet to me, but the children’s books were shelved at ground level, so that I could sit on the carpet and choose half a dozen to adopt.

While the elevator paused and we waited for a patient in a wheelchair to slowly navigate the door, I continued to luxuriate in the memory for as long as I could before returning to the here and now. I recalled the twelve-by-eight-inch cream-colored cardboard print of a suitcase named “World Traveler,” given to me the first day I started taking out books. Every week I received a new stamp to put on my suitcase, beginning with a pink one of a bookmobile driving down a country lane, then one of Norway, India, South America, Africa, Spain, Holland, the U.S.S.R., Sweden, Scotland. Somewhere along the line, I had proudly earned a blue satin ribbon that said “Reading Achievement Award,” which the librarian had stapled to my suitcase with a flourish. I was especially fond of the little books with golden spines, like those on the hospital cart’s lowest shelf, in which Santa rode his sleigh across the sky or Pinocchio danced. My love of books began there, in that slender kingdom on wheels. The short elevator ride beside its ghost had transported me. A sweet taste of time-travel. Proust had his madeleine; for me, wheeled bookshelves.

When the elevator doors opened again and the book trolley rolled away, I was half tempted to follow, its novels a Pied Piper for a bibliophile anxious for more escapism, but I turned in the opposite direction instead and made my way to Paul’s room.

I found him awake and tousle-haired with a barely touched lunch tray in front of him. He looked like a wild child, an escapee from one of the bookmobile’s adventures. Before I could say where I’d been, Kelly swept in for the afternoon’s speech therapy session, and I took my usual seat in the corner, beside the windows, and far enough to Paul’s right to be invisible to him.

“How are you feeling this afternoon?” Kelly asked Paul.

“Feel as like a rising just dust in ear,” Paul answered. “Wasn’t like this morning.” Puzzled, Kelly noted it on her clipboard.

I loved the found poetry of a rising just dust in ear. It sounded like a biblical description of humankind. But I knew what he meant.

“Your ear is feeling tingly?” I asked. “And it started recently?”

Turning to me, he nodded yes.

Kelly thought it was a good sign, that he might be getting some sensation back in his numb cheek.

With his cramped hand, Paul found writing very difficult, so Kelly set a large portable computer in front of him and asked him to type his name. She explained that some aphasics can type what they want to say into a computer that speaks for them. Paul looked utterly bewildered, as if he were viewing a device from science fiction that would turn him into a fly or hurl him into a black hole. She pointed to the letter P to get him started. He typed PPPPPPUUUUUUFFFFFF WWWWWES, the letters repeating because he held them down too long. He also had trouble with spelling, and with scanning the keyboard to find the right key (he couldn’t see the letters off to his right).

“Don’t think trots any good,” he reported glumly, and pushed the contraption away.

Despite his gloominess, over the following days his speech and comprehension continued to slowly improve. Every session, Kelly showed him pictures and asked him to describe them, and when he said anything at all intelligible, he often produced curiously quaint answers: “russet” for brownish-red, and “imposing battle scene” for forest. But he invariably tumbled letters, and “sailed away” became “selled outway,” “igloo” became “legalo.” Still, he produced many triumphantly lucid short phrases, such as “It doesn’t look swollen” (about his numb lip), “No use at all,” “Either a semester or fifteen years,” “I can’t speak.” But asking him to describe a picture fetched little response. He did much better with yes/no questions. I was beyond shocked. What had become of the wordsmith? Was his lifelong lavish imagination completely obliterated?

Kelly showed him a picture of an apple. “Can you describe the picture?”

Paul looked hard at it, tilted his head quizzically, as if to dislodge a memory, but stayed silent.

Kelly asked slowly: “What color is the apple?”

Paul didn’t answer.

“Is it blue?” Kelly asked.

Paul thought. “No.”

“Is it orange?”

“No.”

“Is it red?”

“Yes.”

“Good! Now what shape is it?”

Paul remained silent.

“Is it square?”

“No.”

“Long?”

“No.”

“Round?”

“Yes!”

“Good. Now what do you do with an apple?”

Paul twitched his nose, as if at a bad smell. I knew he absolutely loathed fruit.

“Nothing!” he pronounced with a shiver.

Kelly explained that you eat an apple. Paul looked dejected. But I felt encouraged by the flicker of his old self; he had made a joke, albeit a private one, which she didn’t get and he hadn’t the words to explain.

Sadness stole over his face, and he glanced at me with questioning eyes.

You used to find it so easy, I thought. What to do with an apple, other than eat it? The playful answers would have flowed. Dip the halves in paint and stencil a wall. Make a cinnamon-and-clove-studded pomander to hang in the closet. Play tennis. Carve a jack-o’-lantern. Build a beehive . . .

I smiled at him with a closed mouth, lifted eyebrows, and nod of the head, trying to convey: I understand. Keep going. You’re doing fine.

His face softened a little, and he returned to the cards.

Kelly showed him a picture of a man in a suit walking across a park, and urged: “Describe the person in the picture.”

A long pause. “Authoritarian,” Paul said.

Kelly’s brow wrinkled, and her lips parted in a small smile. Patients didn’t often respond with a sophisticated, polysyllabic word. All she said was, “Good. How about the next one?”

People in the next two pictures elicited more one-word answers: “Plebian,” “Amateurish.”

Paul seemed to be seeing the faces of the people in the pictures rather than what they were doing, maybe because the right hemisphere dominates when it comes to reading faces.

On its rampage, the stroke had seared his left angular gyrus, an injury that typically leads to anomia, difficulty in finding words and naming objects or describing pictures. Categories slip through one’s mental fingers. If lesions disconnect the visual cortex from the language centers, a patient like Paul, upon seeing a word, can’t submit the news and summon the sounds that go with it. Reading and writing crash. The brain doesn’t really need them, after all. Spoken language may be an ancient delirium, roughly 2 million years old, but reading and writing are recent fetishes, only about 4,000 years old, and by evolution’s standards, sheer luxury.

Paul’s deficits were unique, his own aphasic signature, but that was common. It may strike impersonally, but how strangely personal aphasia is. Some aphasics only have trouble naming things. Others invent words, or parrot back what people say, or snag on a word and keep repeating it. Stranger still, I’d read of patients who whistled compulsively, or began speaking English with a strong French accent. It all depends on the whereabouts of the lesions. I thanked my stars Paul wasn’t whistling nonstop and channeling French. But that was the least of my concerns.

As I waited for Kelly and Paul to finish, I recited my litany of fears to myself. With his vision so impaired, I was worried about his being alone. For him, anything to the right of center inhabited another universe. Direct his gaze at it and he’d notice it with a flinch of surprise. For seventy-five years he had scanned the world in a familiar way, one his brain processed automatically and he didn’t have to think about. Pivoting his head through a wider arc to see what used to lie in front would take time to become habit. What if he didn’t glimpse a doorstep, or a pot on a hot stove?

Also, he teetered when he walked, and could easily fall and not be able to get up. Aphasia reduced his ability to summon help. His damaged right arm, hand, and leg couldn’t support his weight the way they used to; and he even needed assistance in bathing. I’d been told some of this would improve in the coming months, but at the moment he wasn’t independent enough to be left alone, even part-time. Bringing him back home felt right, but I knew there was no way I could manage his care all by myself. Or rather I could, but it would cost me my independence. Our lives had changed forever, but I didn’t want to vanish into his illness—and it was hard not to, since he really needed someone by him most of the time to act as a guardian and bridge to the outer world. I couldn’t discuss this dilemma with Paul, who didn’t seem to understand the scope of his injury, nor that for right now at least he wasn’t as self-reliant as before. This was deeply frustrating but not too suprising, given the whereabouts of his stroke.

After injury to Wernicke’s area, the brain tends to ignore its perceptual deficits and believes it’s acting normally. Paul’s impaired thinking shielded him from fully grasping what had happened, an irony for which I was partly grateful. He needed the rest, and sometimes it’s merciful to be a little confused and not fully aware of what’s at stake or has been lost. But how do you communicate with someone who doesn’t know he doesn’t know? In a sense, his aphasia was more apparent to me than to him. Comparing himself to the early post-stroke days when he could only say “mem,” he felt emboldened by success; he was communicating. But I knew how far that was from what once had meant success to him. And so, while also cheering each small utterance, I tried to assess the vanished, the wayward, the misplaced among the familiar pieces of his mind.

Not that I could assess my own. My thoughts often sifted through the scraps of previous days, feverishly replaying conversations and events, searching for answers. Try as I might to ground myself and live in the moment, my mind grew more and more unbridled. It seemed to have its own appointments to keep, wandering from clarity to confusion, grasping any tidbit that might help.

From what I’d read, Paul’s best chance for recovery relied on my seeming hopeful, positive, supportive whenever I was with him. This masquerade meant splitting my personas between hospital and home, leaving despair outside his room and sharing it only with friends and doctors. Yet I found myself shutting down and drifting on autopilot, losing resiliency in my voice and animation from my face, as my brain tried to spare me unbearable pain by making it less thinkable. A normal reflex caregivers go through, while they adjust to the new disorder of their world. The brain struggles to shield itself from shock, and it’s just as well. One needs to become the mental equivalent of aerodynamic, create as little drag as possible and strip down to essentials.

Even so, the stress muddles the mind, affecting attention span and memory, and I found myself constantly forgetting things. A small regatta of colorful Post-it notes on the kitchen counter reminded me of most things before I left the house each day, but I kept misplacing my car keys, losing the notes, and forgetting calls I needed to make.

One I remembered. We’re fortunate to have a well-respected speech therapy department at Ithaca College in our hometown, and I phoned a therapist about home visits. Paul was barely physically stable enough to leave, and he didn’t seem to be making much more progress in speaking. But he was now refusing to go to physical therapy, a real bugbear with the nurses, and he kept demanding to go home. Home, from the Indo-European tkei-, which also gave rise to the word haunt. He desperately wanted to haunt his old life again.

“See, can walk . . . sit . . . Good dog. Now home!” Paul demanded of a therapist, who plastered on a smile and ignored what he said.

“Let me see you walk on your own again.” She stepped back just far enough to give him room, but close enough to grab him if he fell.

Walk he did, grumbling all the while, and listing to the side whenever he glared over his shoulder at her.

“Is that the meanest look you’ve got?” she asked. Then added good-naturedly: “You’re certainly improving. You’re walking better than a week ago. Now, let’s take a look at that right hand of yours.”

Her very suggestion scorched him and he yanked his hand back. “No, it’s . . . it’s . . . no . . . it’s . . .” He flapped his good hand, as if mentally paging through words for the ones that were escaping him, something simple like “It’s useless.”

When she lifted the crooked little finger on his right hand, he wailed: “Like h-hell!”

“I’m Catholic, I should remind you,” she teased, raising one eyebrow. I stifled a laugh.

“Back!” Pushing her away, Paul almost toppled over and she caught hold of his gown and steadied him. Planting both hands on his shoulders, she guided him to a small table in one corner, where there were no visual distractions, and once more helped him lift a fork, grasp a cup, wrap his fingers around a pen. But periodically he let out howls of dismay, as she flexed his bad finger too far beyond its stiff limited range. He uttered the howls partly in genuine discomfort, but also partly for show, cranky howls, as she clearly understood, persevering with a look of forbearance.

Soon he stood up without warning, said: “All done. Go away!” and lurched into motion, gown flapping, butt flashing, heading in the general direction of his room, until she caught up with him and, by now feeling worn and irritated herself, guided him safely back to bed.

Years later, he remembered: “In my mind, I was only pretending to be there, and the howls sounded muted to me, because in my mind I was at long last among my books, and immersed in endless swims, Diane in tow. Yes, invisible laps. But also feeling strong and protective, with Diane my Waif of the Water Highway, putting on the helpless little girl marooned on the bank of a churning African river, as I carried her. She who had trafficked with piranhas and anacondas in the Amazon, shedding her able past and pounds of her physical being to become a plucky little creature I could rescue from marauding hippopotamuses and tigers, and with mock-bravado, always bear safely to the other side.” Paul longed to be a leonine superhero once more, at home on his veldt, Commendatore de la Piscine, Knight Commander of the swimming pool.

Kelly paid a last visit, with her discharge instructions, warning us both about the dangers of eating and swallowing: “regular food, honey-thick liquids, pills crushed in puree, small bites, small sips, sitting upright at ninety degrees for all eating, chew thoroughly, swallow what is in your mouth before the next bite, alternate liquids and solids.”

Paul nodded as if he understood and would follow her instructions to the letter. But we all knew that he had forgotten the list, word by word, as soon as Kelly uttered each one, and that he’d need relentless reminding, coaching, and probably nagging, too. Once more she reinforced the swallowing regimen, and stressed the need to use Thick-It in all fluids or he’d increase the risk of particles going down his windpipe and producing pneumonia. Pneumonia he understood. It had been the scourge of his village in the pre-WWII days before antibiotics, and he’d nearly died of it as a child. The explanation was for him, but the instructions were for me, since he wasn’t nimble-handed enough to mix the Thick-It nor cognizant enough to measure.

Altogether we had existed in the hospital for nearly six weeks, long enough to jar our circadian rhythms. Only two times of day descend on a hospital: the starkest noon or a disturbed, disassembled night. For me, leaving its fluorescent dreamtime felt like returning from a distant planet. For Paul, leaving felt like waking from a coma—he was released into a world of light, sound, movement, and color. Miraculously, his world had an outdoors, a way to move swiftly through the landscape, and at long last a home.

Home is a sprawling one-story house right at the end of a culde-sac, on a parcel of wooded land frequented by deer and skunks, groundhogs and raccoons, rabbits and chipmunks, and a host of squirrels. It’s also a tabernacle for birds. At a finch-feeder hanging from a rickety trellis in the kitchen courtyard, six brilliant yellow goldfinches were bickering over the best roost when we arrived. A squirrel hurled itself from the rooftop onto the feeder, caroming off but scattering seeds in the process (which was the whole point). This was a very familiar if lunatic sight, but one Paul hadn’t seen for a month and a half. Peak garden season, the roses were in full riotous bloom, the smoke bush was smoking pink, ornamental grasses were waving tall stalks, and Paul wore the expression of a pilgrim landing onshore after a long voyage.

But he was trapped in the car, and I struggled to help him figure out how to climb free, an act once ingrained, now forgotten, which he suddenly had to think about. What was the exact sequence of planting one foot, then the other, pushing off, grabbing hold with one hand (where? what?), then the other, and pulling up? Awkwardly, in stages, at times falling back into the seat, he emerged at last, winded from the effort, like a creature extricating itself from a formfitting shell. Next he had to negotiate the small step into the house, which he’d taken on his own for decades. But my worries about these little things slipped away as I watched the ecstasy on his face as he stepped over the threshold. For him, being home shimmered with the joy of feeling the fresh air, baking his skin in the sun, sleeping in his own bed, waking to familiar surroundings.

The house smelled the way old houses do in July, when a certain steaminess invades the carpets and any breeze ushers in just enough aroma to give air the barely noticeable tang of summer. Shafts of summer sun filtered in and the pastel walls shimmied with a soft summer light. Wandering unsteadily from room to room, Paul seemed a stranger to the locale, as if visiting places only seen in photographs. Things that had grown stale from familiarity now drew his attention. In the living room: the colorful collection of Hopi kachina dolls, the heavy beanbag rabbit bookends we’d named Bertram and Bibulous, the inflatable cheetah from the Warsaw Zoo standing next to the five-foot-tall sprawling hibiscus tree we always decorated for the holidays. In his cork-lined office, he found all his tools and toys just where he left them, and the framed sepia photographs of his mother, father, and sister.

An entomologist had built the house in the 1950s, with a sloping roof that shut out the high summer sun but allowed the lower winter sun in. Picture windows brought the entire backyard into the living room, which seemed to include trees and grass and of course the pale blue pool. Long ago, amid a marathon of house-hunting, as Paul had sat on the hearth and studied the sloping ceiling, he had an abrupt premonition; he just knew that this was the house in which we would spend our lives. And so we had, traveling to teach or explore, but always returning to our little fiefdom.

The pool was open, the sun hot. I guided him onto the back porch where he sat in an armchair in the sun, tilted his head skyward, closed his eyes, and truly smiled for the first time in many weeks.