One Hundred Names for Love: A Memoir (22 page)

Paul’s tortured search for words reminded me of work by Samuel Beckett, the wild and woolly Irish playwright, novelist, member of the French Resistance during WWII, and literary assistant to James Joyce. In his best-known play,
Waiting for Godot
, Beckett describes God’s inscrutability as “divine aphasia,” and God utters such aphasic-sounding gibberish as “Quaquaquaqua.” I had a new appreciation for Beckett’s character
Watt
, who speaks with aphasic peculiarity, jumbling word order, letters, and sense until they’re cockeyed and no one can understand him. “In his skull,” Beckett writes of Watt, eerily reminding me of Paul, “the voices whispering their canon were like a patter of mice, a flurry of little grey paws in the dust.”

A custodian of silence, Beckett had often created characters afflicted with language disorders, who became tongue-tied or voiceless. With humor, gusto, and impenitent absurdity, he spent a lifetime narrating the unnameable, lives of personal apocalypse, and almost every mummery of human language, literally from first bark to final silence. Paul had relished Beckett, devoured his funny aphasic-sounding fiction especially, and shared it with students. In an odd twist of fate, Paul now spoke as if he were one of Beckett’s characters, as if he existed
within
Beckett’s novels.

My penchant for Beckett rekindled, I stumbled upon his final creation: an aphasic poem. Of all people to wind up beyond the pother and rescue of language! After a fall in his kitchen in July of 1988 (most likely caused by a stroke), to his befuddled horror, Beckett awoke with aphasia, from which he never fully recovered. His last work, “What Is the Word,” tortures itself with relentless aphasic striving. For fifty lines it compulsively echoes variations on this faltering lament: “a faint afar away over there what . . . what is the word—”

In the poem’s avalanche of repeats, elisions, stumbling, and stuttering, I heard Paul’s voice as he beat the mental bushes, hunting for lost words. Paul didn’t know about Beckett’s post-stroke aphasia or the circumstances of his last poem, and I decided not to tell him. Beckett died a year and a half after his stroke, having spent his end days aphasic, in a small, sparsely furnished room, watching soccer and tennis on television, accompanied only by his boyhood copy of
The Divine Comedy
in Italian. It was too dismal a scene to plant in Paul’s skull. He still believed in the wishbone of recovery, and I wanted him to keep reaching for it. Me, too. If only we both reached with gusto, at least one of us was sure to win, and it didn’t matter who.

CHAPTER 18

A
WELCOME LETTER OF ENCOURAGEMENT ARRIVED FROM A
friend, with the gift of the Indonesian phrase
Holopis kuntul baris
(hoh-LOPE-iss COON-tool BAH-riss), uttered to summon extra muscular strength while carrying a heavy object, or summon more energy when toiling under a mental or emotional burden. I took to whispering it to myself. In America, we have war cries, work songs, marching chants. But we could use a phrase of our own whose only purpose is to concentrate fading energy, a bolus of sound uttered just to grip one’s resolve.

The big crisis might be over for Paul, but many smaller crises followed, accompanied by lingering fears. Would he fall? Would depression strike him again? Would he give up on speech therapy? Would he learn to dial 911? Would he ever agree to use a cane? Would he be safe cooking? Would a poorly swallowed pill catch halfway down his throat? That happened more often than we liked, and the burning pill would cling like a suction cup and take ages to dislodge, leaving him with a badly inflamed throat. Another epic nosebleed? Scrape his leg, pick up a splinter, or scratch a bug bite (any of which easily became infected)? Contract pneumonia (sometimes spawned by a simple cold)? High blood sugar? High blood pressure (usually heralded by a headache, but headaches could also be run-of-the-mill)? Aspirate food down his windpipe that, for once, he couldn’t free? Suppose he fell and broke a bone? I never knew from day to day what medical frights might unfold.

And then there were all the lesser crises: trying to fathom bills and taxes, dialing a phone number, working the Xerox machine, composing a letter, going out (bank, restaurant, clinic), or Paul daring to speak on demand with strangers. Navigating some days felt like a sheer drop on a country road. Others like driving over a street full of hidden potholes. Which one would crack the chassis?

Coping with those trials wouldn’t have been possible without our cushion of snuggling closeness each morning, when we were simply sweethearts. Paul’s sleep gradually returned to its old timetable of late nights and late rising. But a new era deserved new rituals, so after rising at dawn, I usually crept back into bed and woke Paul at 11 a.m., and we cuddled for half an hour or so. Soon afterward we would hear the telltale
whumph, ping, clatter, gush,
and
clunk
—which meant Liz had opened the door, microwaved water for coffee, unloaded the dishwasher, set pills, started preparing Paul’s breakfast and going about her other morning chores.

Thank heavens the brain has a mind of its own, because on weekends, holidays, and during Liz’s myriad travels, I became submarine commander and crew combined. Breakfast routine. Then maybe shaving or showering. Helping him dress. Lunchtime medications. Swimming and supervising the careful transition into and out of the pool. Preparing dinner, taking dinner pills. Endless channel-changing with the insidiously complex TV remote control, whose array of buttons and arrows continued to look like runes from extraterrestrial Bingo. Or reading his mail to him, doing bills. After a few days, I felt tired at a visceral, mineral level, and slept in thick geological strata, not hours.

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 sweetest 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.