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.
PART TWO
A HOUSE MADE
OF WORDS
CHAPTER 12
NEUROLOGIST OLIVER SACKS HAPPENED TO BE IN TOWN, lecturing on things cranial and sharing tales from the splendid curiosity cabinet of his mind. We dined together with mutual friends, and learning of Paul’s stroke, he asked if he might stop by the following afternoon, a time when Paul usually avoided most humans and only the Cyclops of the television felt safe and unjudging. An ephemeral splinter of day, when neither Paul nor the earth was brightly lit.
Oliver appeared at the screen door, a white-bearded man with a gentle smile, tucking a small single hand-lens into his pocket. I recognized the device because I’d thought of ordering one myself, a portable eye for peering more closely at things. He seemed a kind, quiet man, a little shy perhaps, with loam-dark eyes and a youthful face. It didn’t take him long to appraise Paul’s malady, and he gave us some encouragement we found valuable and comforting.
“Many people—including doctors—will tell you that there’s a window of opportunity during the first months right after a stroke, and after that the window closes and you won’t be able to improve. That whatever you haven’t regained by then you won’t, and you’re going to stay that way the rest of your life.
“Don’t listen to them!” he cautioned with soft-spoken fervor.
“You can continue to improve at any time, one year, five years from now. . . . I have a relative who kept making important improvements ten years after her stroke.”
Just as Oliver suspected, we’d both been warned by some doctors, nurses, books, and common wisdom that a “window of opportunity” would close about three months after Paul’s stroke, with further progress slowing to an imperceptible pace. A stressful, depressing, and potentially self-fulfilling message, which we were relieved to hear Oliver dismiss. What would Paul’s life be without hoping that he might one day recover some lost skills, however small?
As Oliver spoke, his face conveyed concern, respect, and good-will—all wordlessly. I was struck by just how legible a face could be, especially to someone like Paul, deprived of language. Bless those mirror neurons, I smiled, toiling away while we’re busy watching and listening. I wasn’t quite sure how it was possible, and I doubted Oliver was aware of it himself, but even while he spoke of serious matters, his eyes crinkled with an innuendo of lightness, hopefulness.
Out of the blue, gently tapping his hands once on his knees, Oliver invited Paul to sing “Happy Birthday” with him, even though it was neither one’s birthday. Then they celebrated their successful duet with a rousing verse of Blake’s Jerusalem, a staple from their English childhoods, which Paul sang heartily off-tune. It was a splendid scene, the two chaps rendering boyhood songs. To Paul’s own astonishment he could remember and sing most of the lyrics to both. And so he discovered, as Oliver had hoped, that it’s much easier to find familiar patterns than exact words, especially if they’re accompanied by music. This works famously well for children learning to sing their ABC’s and other lessons, but isn’t only true for humans. Among humpback whales, rhyme helps the males remember the lowing diphthongs of each year’s rhythmic, raga-like songs.
A few years later, Oliver would publish Musicophilia, a lyrical treasury of information, insight, and stories, in which he tells of doctors using “music therapy” to help aphasics communicate, especially those like Paul with large left-hemisphere lesions, because quite often “a person with aphasia may be able to sing or curse or recite a poem but not to utter a propositional phrase.” He urged Paul to try singing words out when speaking words failed him. And explained that in one promising field of treatment, melodic intonation therapy, aphasics learn to speak musically, in lilting phrases, which recaptures some of the childhood fun of singsong nursery rhymes, and calls on the musical haunts of the brain to lend a hand in the effort. After singing phrases, they slowly learn to say them. It can be a long demanding therapy, but after the torments of aphasia what price wouldn’t one pay for language?
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There was an instant rapport between Paul and Oliver that came, I think, from Oliver’s genuine understanding of Paul’s lost and aphasic worlds, complete with Oxford days and the otherness felt by smart, quirky, creative boys growing up strange in a conventional society. He didn’t underplay the hard journey ahead for Paul, but he was encouraging, and his belief in Paul’s ability to improve lifted Paul’s spirits.
After Oliver left, Paul, drained from the effort of socializing, headed straight for the pool like a boy crawling into his mother’s blue arms. Climbing up and down the ladder, balancing in the water, skimming bugs and leaves, swimming the breaststroke and treading water all served as welcome physiotherapy for his body. As the visible waves oscillated happily around him and he rested his tired ears and mouth, sensing instead with the large silent organ of the skin, I took heart in watching him smile with inexpressible pleasure.
Before the stroke, the pool had offered him a lightness beyond or before words, a different kind of trance from the one in which he wrote in his star-crazed hours, most alive when alone in late night and early dawn. He used to quip that some days the pool was more lucid than he was. Or was it I who had said that? I no longer knew. A merry confabulation of ideas and phrases can arise in a twosome even if they don’t speak (or think) in the royal “we.” Since returning home, Paul had spent every afternoon swimming, just as he had in previous summers. But it took on a new poignancy.
One Hundred Names for Love: A Memoir Page 12
