One Hundred Names for Love: A Memoir (8 page)

People like Paul, doubly stricken with global aphasia, have extensive damage to their language areas, and lose most of their ability to speak
and
understand language. So this meant that when I, the nurses, or the doctors talked, Paul had two problems: he couldn’t necessarily comprehend what we were saying, and he was unable to find words to respond. For people with such severe aphasia, everything verbal may suddenly vanish from their lives, leaving them only with gestures and facial expressions when they try to communicate. Paralysis of the right face and arm usually accompanies Broca’s aphasia (because the frontal lobe is also important for movement). So Paul’s numb hand, drooping face, and swollen arm were to be expected. And since the left hemisphere stores memories of how to perform skilled acts, I shouldn’t be surprised that he couldn’t remember how to comb his hair. Despite the brain’s plasticity, global aphasia isn’t something that disappears; Paul’s brain was extensively scarred. Making any improvement, even the smallest, would take him a devilish amount of work.

He
was
speaking, but most of what he said was a stream of nonsense words.

“Would you like anything from home?” I asked casually, more as an aired thought than a real question.

Nonetheless, he humored me with a run at an answer: “Hrfg! Mememememememem. Bbbnto.”

“
Bbbnto
” I repeated. “Does a bento box have something to do with it? It’s divided into little rooms?”

He looked at me as if I’d just recited the Kaballah in Japanese, and shouted this time: “MEM, MEM, MEM!”

Startled, I backed up, and he fell silent again.

In the confines of his small hospital room, hour after hour, he struggled to talk and understand, which was arduous if good practice for him, and bone-wearying for me, a frantic game of “Twenty Questions” played with nothing but enigmas. Strangest of all, he seemed convinced that he was making perfect sense and everyone else should understand him, but for some stubborn, spiteful, villainous reason, we were all pretending to be clueless.

CHAPTER 6

A
S I PREPARED TO LEAVE FOR THE NIGHT, PAUL WORE AN
expression of fear, bewilderment, impending doom.

“
Noooo
,” he said, first imploringly, then urgently, then willfully, then angrily, and finally, his eyes metallic with hurt, he turned from me in a bitter sulk. When I tried to hug him, he pushed me away.

“
Nooo!
” he hissed again, this time with a visibly damp forehead. He clung to the bed rail as if to gain time on the eve of a great abandonment, stampeded by panic but with nowhere to run.

“I’m sorry, honey, but I swear I’ll be back tomorrow morning,” I tried to reassure him. “You’ll be all right. You’ll sleep. The nurses will look after you. You’ll be all right. I’ll be back soon.”

But he didn’t believe me. His face bunched up tight, as if soured by lemons.

Loss, confusion, powerlessness, plus not being able to communicate: that bolus of misery led to frustration so visceral it often triggered angry outbursts. But a stroke can also injure a part of the brain that
controls
angry emotions. Usually the reasonable prefrontal cortex reins in the boisterous, impetuous limbic system by putting things in perspective, judging the danger, advising compromise or restraint as need be. The feel of that balance is what we call
wellbeing
. Paul’s stroke had damaged his prefrontal cortex. No wonder his emotions were skidding out of control.

Paul’s continual indignation—which he expressed with fierce glares and snarling, loud, mainly unintelligible recriminations—began to unsettle me. I already felt frayed to exhaustion from conferring with doctors and making decisions about his daily life, safety, progress, and comfort. Taxing enough if I felt he appreciated my efforts. An irate, helpless, demanding spouse at times filled
me
with anger. In such moments, I might silently fume:
What an ingrate! What do I need this for? I’m not your spinster daughter!
And I could see why stroke victims were often entrusted to nursing homes; it was like a divorce from someone you nonetheless loved, wanted to help, and were fated to look after.

Paul begged me to stay with him twenty-four hours a day, a panic I could understand, since I was the only continuity in his chaos. As children we often find the world littered with baffling frights, which only a parent’s soothing can calm. I remembered hiding behind my mother’s skirts at such moments when I was a girl. All I had to do was stretch up my arms and look scared, and my father would lift me onto his solid shoulders, away from the hurly-burly of a crowded street or beach. Paul had only me.

Furious as Paul was about my leaving at night, he was doubly enraged that I wouldn’t take him home. Summer bloomed beyond the windows. A lifelong sun-worshipper, Paul used to tan until he looked like furniture—a rich mahogany burnish he had kept well into the winter—and he obsessed about swimming. Pool was one of the few words he could reliably summon from his battered attic.

“Pool!” Paul would demand, his eyes threatening and hard.

“Pool,” he would moan in barely audible yearning.

“Pool,” he would tell doctors when they inquired how he was feeling. They understood: He wanted to go home and enjoy the long-awaited fruits of summer. A normal desire. But I doubt they grasped that, in his picturesque brain,
pool
had become the symbol for everything un-hospital, life before the stroke, typified by hours afloat in the sun. Like a child, Paul was using his first words to evoke whole situations, not just specific things. Pool time often had included my climbing, half floating and nearly weightless, into his arms, wrapping my legs around his waist, and laying my head on his shoulder, while he carried me through the shimmering blue, my face in shade, his catching the rays, like a knot of frogs basking in the sun. Ever since his retirement a decade earlier, he’d luxuriated in the water for hours each summer day. Rain or shine. If it was chilly Paul had worn long thermal underwear that we called his “germ suit” (because he looked like a giant microbe in it), and if it was merely raining, he’d swim naked but wear a cap, sometimes while smoking a cigar. Unable to explain all that, he encapsulated his yearning into the single word
pool
, a symbol he knew I would understand. At times he said the word in a heartbreaking whimper that roughly meant: How could I leave him and leave him in exile?

But I continued to go home most nights, even though it felt at times like fleeing the scene of a crime, and after a few days, when he realized I would return in the morning and he’d been able to weather the nights on his own, his anger at me subsided. At last he let me crawl in bed with him, and we snuggled for hours. A mellow nurse, on her rounds, caught us and smiled, but didn’t suggest I get out of bed. She simply pulled the privacy curtain around us, and then we were transported to the barely private rooms in an ancient Japanese palace where the walls were a fabric that billowed in the breeze. For those court ladies, being private in public had become an art form. For us, sheer necessity.

We couldn’t stay like that for long; nurses and aides needed access to him, and I needed to try my best to rest. So when at last Paul began breathing deeply in sleep, I’d steal away and drive down the forested hill leading into town, cross over the inlet, then take a curving highway uphill, with the hospital lights small lanterns from a floating world across the lake, and a mist-shrouded summer moon ahead.

THERE WAS A
time when I could be decoyed out of bed by the simple beauty of a summer morning. Now I awoke tangled in worry. All I could do was wither and wait, breathing shallowly, as one often does when beleaguered. I needed to find some calm and continuity again, so I practiced a few minutes of
toning
, a fourteenth-century word for singing or chanting in elongated vowels. Inhaling deeply, I exhaled
ah
until my breath faded, inhaled again and exhaled a louder steadier
ou
(as in soup), whose vibrations I could feel in my cheeks and ribs, then inhaled again for a more invigorating ee, and finally for a rotund
oh
. I sang out the sounds again, this time louder and more richly. Echoing around the bones, the vibrations steadied my breath, focused my mind like a mantra, and relaxed my body. It helped calm me a little, just as it always had, not only by deepening my breath, but by vibrating my cartilage, sinuses, and bones in a sort of tonal massage.

I knew I needed to ground myself, so in the early-morning light, I strolled through the neighborhood, admiring tar patches poured in random squiggles on the roads, imagining they were poems in Japanese, Chinese, or Tibetan, which I translated. Working on a haiku as I walked helped me focus my mind on something other than illness, something natural and timeless, such as: “Orange stars on stilts: / Late summer in the garden / Before the leaves fly.” Returning home, I noticed a bush of yellow peonies blooming like brilliant handkerchiefs against a backdrop of multicolored tulips. Glossy, purple, spaniel-eared irises were swaying next to their wilder yellow cousins, the Siberian irises, which had traveled a long distance from their ancestors on the Siberian steppes.
We’ve all traveled
, I thought.
Parts of us, anyway
. Some of my traveling parts would end with me since I had no offspring. For a moment that fact saddened me. There was a time when I’d thought of my books in that way, as extensions of myself that would outlive me. I no longer did. These moments all alone before the peonies and irises in the dappled light of a summer morning seemed enough. This little everywhere, this nowhere else.

I ARRIVED AT
Paul’s room with a few home comforts: favorite pillows; sugar free chocolate pudding, blueberry-orange vegan muffins (comfort food for me); photographs of friends and family, to help orient him; a book of cricket photographs to page through when he was bored, his coziest robe; and “Bear,” a plush teddy bear we’d adopted in Florida, whom Paul had sometimes chatted with and nestled beside for TV viewing. I really wanted to bring him his favorite foods but wasn’t allowed. So no old eccentric habits of dining on fish paste, Wasa bread, Dr. Brown’s Cream Soda, and Cheshire cheese.

“Did you sleep well?” I asked, adding a cartoonish pantomime of someone sleeping: eyes closed, palms pressed together under a nearly horizontal cheek.

“Nothing!” He said the word with a pronounced shiver, as if wishing to be rid of the whole concept.

I pictured him waking worried, hungry, miserable, and alone, still in the hospital and unnervingly tongue-tied, almost mute, to lie in bed doing nothing, unable to read or write. He couldn’t even watch the clock and count down the minutes, since he was unable to read the numbers. Although he returned to wearing his wristwatch each day, he’d usually put it on upside down. It made no difference if I told him “I’ll be back in one
hour
” or “in one
day
.” A day was not greater than an hour; either fetched the same vacant stare. Breakfast wouldn’t arrive for uncountable bleak hours. His only outside visitor, I wasn’t due for ages either. I knew that expanse of empty hours poisoned him. So I arrived early each day, well before visiting hours began, usually in time to help with breakfast, and then persuade him to go to physical therapy, which he absolutely loathed, finding it boring beyond belief. And unnerving, too, because he had seen many men with similar afflictions.

In post-WWI England, the walking wounded had peopled Paul’s childhood and drawn sighs of pity. Beyond the estimated 10 million who died during WWI, twice as many had been wounded, many with brain injuries. No doubt there were plenty with aphasia as well, but those he never heard about. Many doctors didn’t bother with formal neurological tests. They just served their patients afternoon tea and observed the balancing act of eating and drinking. Could the patient lift his dominant hand? Hold the cup and saucer without shaking? Did his spoon bang against the porcelain teacup? Did any of the fingers droop? Could he raise the cup to meet his lips? Swallow the tea without choking?

Before the war, his village’s stroke patients had mainly been elderly, retired, and short-lived. But after the war, typical patients were otherwise healthy young men, longing to return to a normal life. In the first rehabilitation clinics, which sprang up in Germany, doctors based their therapy on how children learn to speak: sound by sound, then syllable by syllable, word by word, phrase by phrase. If patients couldn’t make certain sounds they were told to puff out cigarette smoke and shape the motion into desired sounds. Paul would have loved the return of his cigars, which his cardiologist had banned, relegating them to dreams, old photographs, and cherished memories of curling up with a bottle of cognac.

For Paul’s rehab, two physical therapists drilled patients in the humdrum skills of moving a body through daily life, motions we take for granted and barely notice because over the years they become ingrained. Skills that aren’t instinctive but mastered. In some cases—such as how to hold a spoon—learned when we were in the crib. In childhood, as they were practiced, small failures could produce photo opportunities and a parent’s reassuring laugh. In Rehab now they needed to be relearned, and small failures weren’t cute but sad or even worrisome.

Fractious patients like Paul had to be cajoled out of their rooms, and wheelchair-bound patients slid or hoisted into a chair. Sitting in a circle in a toy-littered den, they might kick a red rubber ball back and forth to each other. Or sit at a table and slowly stack colored blocks with one unsteady hand, then the other, working both sides of the body. Paul hated these exercises, designed to improve hand-eye coordination, which he found both demeaning and very difficult. During the stroke, he’d lost a corridor of vision off to the right, a common complaint. The stroke had damaged some fibers that carry information between the eyes and the visual cortex, creating a blind spot in his right field of vision. To see the right margin of a sheet of paper, or food on the edge of his plate, he now had to remember to turn his head to the right. He couldn’t grip with his dominant right hand, or discern textures with the two clenched fingers, which were numb.

In one alcove, a bare white kitchen gave patients a chance to grapple with the implements of home: slippery bowls, stemmed pots, tight jars and cans, a reluctant refrigerator door. In theory, they were taught how to cook safely and use a stove without scalding or burning themselves. Essential for people returning home and hoping to be independent. But Paul’s visual gap, and also his inability to follow simple stepwise instructions, made cooking dangerous, and he rarely ventured into the empty, bright therapy kitchen.