Besides the here and now with Paul lay the household soap operas, such as my returning home from an afternoon out to discover that the house had been struck by lightning, the circuit breakers had been thrown, the smoke alarms were chirping, and the TV was blown. Paul, who had been alone through the visitation, told me proudly that he’d seen a ball of lightning rise from the floor and shoot up through the ceiling, hurling a burst of energy that had thrown him back onto the couch. Our household mantra of “never-a-dull-moment” began to seem like a bizarre understatement.
For safety, I arranged and rearranged the house to accommodate Paul’s loss of balance, muscle strength, and vision. Anything he could bump into or trip over was moved, especially throw rugs. I set his dishes and mugs within easy reach, and turned his spoons and forks around in the cutlery drawer so that he could differentiate them from their modern and sleek, but harder-to-eat-from, Danish brethren. His favorite foods were always in the same accessible place at the front of the refrigerator. Though he poured his own milk from a carton with a spout, he usually spilled it; washable placemats and bibs did duty, with extra dish towels on hand. The telephone cord was taped to the sideboard with pink duct tape, so that he wouldn’t trip over it. I had a raised toilet seat installed, since the muscles on his right side weren’t as strong as before, and rising could be tricky. Extra couch pillows provided support. Even such incidental items as kitchen garbage bags had to change, because tie-top bags were too confusing.
Scrap by scrap, fragment by iota, life continued to evolve to accommodate his illness, which took on a life of its own, and became another inhabitant of the house, a central one, complete with special foods and routines. Like Christoph Detlev’s death, I sometimes thought, remembering a lyrical passage in Rainer Marie Rilke’s only novel, The Notebooks of Malte Laurids Brigge. “Christoph Detlev’s death,” Rilke wrote, by which he also meant Detlev’s illness, “had been living at Ulsgard for a great many days, and spoke with everyone and demanded. Demanded to be carried, demanded the blue room . . . demanded the dogs . . . demanded and screamed. . . . His death couldn’t be hurried. It had come for ten weeks, and for ten weeks it stayed. And during this time it was more the master of the house than Christoph Detlev had ever been.”
In college I’d memorized the complete passage in German, because its exquisitely ornate sentences had so stirred me. I didn’t really understand then in a visceral way how someone’s illness could fill every corner of a household and take on a life of its own. In its thrall, gradually everything evolves: schedules, dramatis personae, meals, furniture, travel, routines, climate, conversations, layout of rooms, even the definition of the words “calm,” “independence,” “free time,” or “leisure.” Tranquillity hides in small spaces, and when found needs to be treasured, because you know it’s a phantom that will slip away again. The set points of daily life change. Sometimes, as in the case of Christoph Detlev, illness or death may feel like more of a presence in the house than the man himself does. This isn’t a lodger one chooses, but can adapt to, like any other, until new routines become habit, new concerns ingrained, new faces customary, and the texture of everyday life feels familiar once again.
I understood this intellectually, but the slew of new routines made everything feel temporary and uncertain. Many daily chores—setting up Paul’s pills, for instance—now required strict attention and a mistake might have horrible consequences. I simply couldn’t afford the luxury of going to pieces. Always a mystery trip, life had changed without warning, from casual to cliff-like. I had to reckon with medical visitors and employees. Coping with the new regime meant often locating my inner submarine commander and letting her preside. But some days all I wanted was to curl up and be taken care of, and as caregivers often find, little room existed for my concerns or woes.
Stroke changes everyone in a family. I began noticing with surprise how caregiving can reduce one to a role rather than a relationship. One normally plays so many roles—from paramour to parent, monkey baby, prom queen, warrior, florist, nosy parker, servant, savant, and a dozen more—all obvious, finite, and clear as switching between camp songs and flute solos. What had changed? I’d not only lost the old Paul, I’d lost those parts of myself that had related to those irretrievable parts of him. For instance, the Escher-like paradox of each being the other’s child. I now saw how lopsided that had become.
“You’re still my child, but I’m no longer yours,” I confessed tearfully one day.
He opened his arms, held me close, stroked my hair with his limp right hand, stroked my cheek with his left, kissed the bridge of my nose, and murmured: “Oh, little sweetheart.” Then, putting his hand on my chest bone, haltingly, he incanted: “Safe.”
My habits were mutating. I was being more affectionate than before. He needed me closer when he was in such a fragile state, and I needed to feel closer, too.
Once he said: “You don’t know . . . miss you . . . go away.”
“I don’t know how much you miss me whenever I go away?”
Yes, he nodded. I knew he meant small excursions of an hour or two, and that I was the only constant in his newly chaotic world.
In many ways, I had become the functional part of him. Without meaning to, I sometimes caught myself talking on his behalf to someone as if he weren’t present. Easy to do, especially since, after years of living together, one can intuit how the other might finish a sentence.
“How is your hand, Paul?” Dr. Ann asked during an office visit.
When nervous, or under pressure, aphasics find speaking even harder than usual, just as stutterers do. Without thinking, I answered, “It’s still bothering him a lot. But he insists on eating with it anyway, and not switching to his left hand.” In a reflex of being a caregiver, I became his voice.
“Is that so?” She redirected the conversation to Paul, as she inspected his still-tanned right hand, gently opening the crooked finger and flexing the others to test their range of motion. “Are you eating with your right hand?” She made solid eye contact with him.
He nodded yes.
“That’s amazing.”
He shed a small proud smile.
“I think it will help retrain your hand, so keep on doing it,” she said in a slow, respectful, caring voice. She was wearing a long sage dress, dark green jacket, and matching green eye shadow. A barrette secured her shoulder-length brown hair on one side. The greens suited her, and I read in Paul’s appreciative eyes, as he took in the meadow colors, that he wanted to tell her how beautiful she looked, but couldn’t find the words.
“It’s really good for your hand to use it, even though I know it can sometimes be hard to control,” she said as she continued with her exam, checking his heart and lungs. I knew Paul wouldn’t understand what she was saying about the new medications and their dosing, but now she directed her comments to both of us.
In speaking for Paul, I had only meant to help. Instinctively, one takes over when a loved one stumbles, but that can backfire, making him appear helpless. So in the future I tried always to include Paul in conversations, as if he could understand everything we were saying, lest he feel ghost-like—not just silent, but mindless and invisible.
Constricted by the presence of aides, doctors, or speech therapisrts, I sometimes addressed Paul by the saint’s name his mother bestowed upon him at birth, a public name, not one of the playful monikers we’d concocted ourselves. And I spoke conventionally, the way one does among strangers, not in the cozy dialect we’d personalized, as families do. This not only made our interactions sound oddly formal, it widened the distance between us. So whenever other people weren’t around, I returned to our special jazzy inflections (ass-par-AH-gus; caul-IF-o-lur), emoticon mroks and other noises, delighted we could still communicate without normal words. After dinner each evening, we sat on the couch and cuddled as we watched the flickering hearth of the TV. Those were some of the sweetes
t moments of the day.
“Want to hear a monkey baby sound?” I asked when we were alone one evening, at a time when I knew language had completely failed him.
Yes, he nodded.
I made a whimpery sound that went with a helpless infant’s facial expression. He pulled me close and hugged me. Anyone would respond, and for that matter so would a dog. Some sounds are universal heart-tugs for mammals—especially that of an infant in distress or someone in pain—and some are particular to monkeys and apes, who manage to convey loads of data and subtle feelings through emotion-packed sounds, facial expressions, and gestures. Even a macho alligator will come running if you mimic the high-pitched grunt of a crying baby gator. Hard-wired into us, these primitive wiles automatically elicit a response. They may be how language evolved, from involuntary notes of joy, pain, pleasure, curiosity, and other lively outpourings. We spent the evening making soulful monkey baby sounds of pure emotion, grunts and mews and whimpers, happy for this new well of communication, and laughing at how silly we could still be together, words or no.
CHAPTER 19
PAUL WOULD DITIFULLY JOIN HIS SPEECH THERAPIST IN the library for an hour each day, emerging exhausted and demoralized, having punished his brain in an effort to fill in blanks, list words within categories (how many flowers can you name? None . . . How many animals can you name? None . . . ), link words with pictures, and attempt to perform other language skills. She tried teaching him to ask himself: What category is a word in? What color or shape is the object? If he could exclude many competing things, his quest would be clearer. Despite their simplicity, he found the exercises demanding and at times impossible.
Later, I watched Paul puzzling over workbook pages, trying to rack words, like skittish pool table balls, into the rigid triangle of just one concept—he was racking his brains.
“Can bowls swim?” a question asked. I knew the answer they wanted was No. But bowls could float, even heavy bowls, if flat and large enough. The large, flat-bottomed bowl of an ocean liner, for instance. If Paul thought like that, too, he’d give the wrong answer. They meant small inanimate household bowls. Not the bowl of the deep ocean, say, holding currents, coral, plants, and creatures—itself floating on the earth’s liquid core of iron and nickel, whose swaying produces Earth’s magnetic field. Not the bowl of the earth floating—or, with so many life-forms, was it swimming?—in space.
“Can water freeze?” That one was easy. But some other questions required only the literal meaning of a word, not the way it’s used every day in slang. “Can bullets grow?” Certain kinds of exploding bullets expand, grow, on impact. “Can pearls fly?” If someone throws them. “Can beavers talk?” Those in the Ipana toothpaste commercials of the 1950s used to sing. “Is a siren loud?” Air-raid sirens—yes. The seductive bird-ladies of Greek mythology who lured sailors to their deaths—not necessarily. “Can stones burn?” And how. The stones on a sun-baked beach, or the stones encircling a campfire. “Can bags frown?” They often do, especially when groceries are packed unevenly. “Are parakeets tame?” Store-bought—yes. But wild parakeets nest on several continents. Paul loved the squabbling, squawking monk parakeets that nest in Florida palm trees. “Are potatoes hollow?” No . . . but the minute I read the question I imagined a hollow potato. An intricate ivory one, carved by a Japanese craftsman, its skin a filigree where, on closer inspection, a cityscape loomed. “Are vitamins greasy?” Some absolutely are. The thick syrupy gold vitamins my mom fed me when I was little slid right down. “Are coupons expensive?” I presumed they meant coupons offering discounts at the supermarket. But municipalities had to pay the coupons on bonds, and they could be expensive. “Is satin sticky?” If you had rough fingertips, as Paul did, then your fingers snagged easily on satin and other slick fabrics.
Choosing the correct answer could be as tough as herding cats. But, like most people, I did know the accepted answer. Selecting it, I had to ignore all other answers that sprang to mind or were truer to my experience. Could Paul do that now with a hurt brain? Could he understand the domestic use of a word, while chasing away wild game? Or had his mind become simpler than all of that? Had he lost the mental elastic that used to connect everything to everything else with the tug of a few words? There it was again. Tug was another of those deliciously ambiguous words. I pictured the game we played when I sneaked up on Paul from behind and tugged almost imperceptibly at his sleeve; then I pictured a tiny boat tugging a goliath tanker into port.
Bewildered, Paul handed me the homework sheets, on which he had answered a few questions, and I silently read them, shaking my head in disbelief. Some questions seemed simple, yet were fiendishly ambiguous. Only context was missing, the opera of cues we often need to guess what sentences mean.
“Do you drink a cup of water or drink a cup of river,” I read out loud. My eyes clouded with memories of the Amazon River Basin, weeks of floating and walking through the vine-thick jungle, under canopies effervescent with life. After dinner one evening, carrying an underwater lantern, some boat mates and I had snorkeled in waters dark and clear as quartz. Except for the occasional stingray, there was nothing much to fear. Nothing large enough to see, that is. Out of curiosity, I’d drunk a slow, savory mouthful of river, which tasted tinny yet soft, as if it had been stirred by water hyacinths, mechanical watches, and dolphins. Bad mistake.
“Remember when I drank some of the Amazon and got that awful parasite?” I asked Paul.
“Gaaagh!” His jaw dropped, his eyes widened, and he aped the blue tribal mask I’d brought home to him along with reddish-brown bats carved from mahogany, polished to a tranquil sheen, and bark-cloth paintings of butterflies in ginger, ochre, and black. The black had come from pressed fruits of the huito tree, which produce a liquid like invisible ink that’s painted on with clear brush-strokes, but later oxidizes to a rich, satiny black in the open air.
Then the huge sprawling Amazon vanished from my mind’s eye as I followed Paul’s finger, pointing to a workbook question that offered Sit at a table vs. Sit under a table. He pointed to Cement is hard vs. Cement is soft. Next he spread his fingers stiffly—all but the two droopy ones—in a sign of tortured woe. Then he mimed the weighing of produce. At last, sighing unevenly, he seemed to let all the air out of the room.
I understood. Poured cement is soft, set cement hard.
“How about these?” I pointed to Bridges can be carried vs. Radios can be carried, and Sew your hair vs. Comb your hair.
“Yes!” he said, making a darning motion in the air.
Of course one could sew with hair. Before manufacturing, people sewed with animal hair.
“Kwai,” he added. Just the one word. For a few moments, I floated the word in my mind . . . Kwai . . . Kwai . . . only its bare sounds at first, until images marched in. The Bridge Over the River Kwai was a favorite WWII film of Paul’s, in which prisoners built, while simultaneously sabotaging, a wooden bridge for the Burma railway.
“Do you imagine these things—carrying a bridge or sewing with hair—when you read the sentence?”
“YES,” he whispered hard in exasperation, while rubbing his brow with his good hand.
Even if he understood all the words—and I wasn’t sure he did—he was still too imaginative for this sort of exercise, which required a different habit of mind. The minute he heard or read about it, he automatically pictured taking cabbage for a walk, wearing poems, or discovering a wall full of money. The brain imagines whatever it’s told about, and trying to suppress a thought results in preoccupation with it. Try not to picture a polar bear.
“Want to take a cabbage for a walk?” I teased with an exaggerated smile. “I think we’ve got a cabbage leash around here somewhere.”
“Why not,” he said in a blasé tone, like any normal spouse being asked to walk the family spaniel.
In all Paul went through five speech therapists, mainly teaching t
he same skills in the same way, none able to help him progress much. Number one was Catherine, a handsome middle-aged woman with tawny skin and an apologetic smile who had the habit of peeping up over her rimless glasses, as if she were repeatedly surfacing from a deep thought.
“Can you use these words to make a sentence?” she asked Paul, setting five cards on the table, one word printed on each: “Pat,” “John,” “down,” “eats,” “sits.”
Paul stared at the cards for a long silent spell, without touching them. Later he would tell me that they sometimes looked like worms cavorting on ice floes, or hieroglyphics on a tomb wall. He wasn’t sure which, not that it mattered much, because reading was no longer an effortless and unconscious knack. The brain doesn’t swallow a word whole. It breaks it into twigs, then reassembles the separate letters, syllables, and sounds to create meaning. Some of those mental steps had been damaged during the stroke. Anyway, he didn’t know what these scattered words were for. What was he supposed to do with them? Was it line them up? Soon they lost their novelty and he sat back in his chair and began drumming on the table with bored fingers.
“Now, now, don’t give up so fast!” she said. Leaning over the cards, she arranged two of them like this: JOHN EATS. “John eats,” she pronounced slowly and deliberately. “See? It’s easy. Now you do it.”
Then he allowed one hand to hover above the words, before slowly lowering it into action and plucking at the cards, sliding them into different arrangements, finally settling on PAT DOWN and JOHN SITS.
Toward the end of the session, their fifth time together, she surprised us by announcing: “I’m afraid I won’t be able to work with you anymore, Mr. West. . . .”
I looked questioningly at Paul. Had something gone amiss? He seemed puzzled as well.
“Because I’m getting married this weekend!” She beamed. “And we’re leaving right after the ceremony on our honeymoon . . . in Europe. We’ll be gone all summer.”