One Hundred Names for Love: A Memoir (14 page)

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.