One Hundred Names for Love: A Memoir
We snare things in words, if only for an instant, by ripping them from their compound relationships and freezing them in time. For instance, twenty clusters of wisteria are hanging right outside my bay window, each one a tidy tumble of gray-purple faces with lavender bonnets. I think they look like turn-of-the-century ladies seated in church pews. The word wisteria doesn’t capture the vine’s connection to the redbud tree, around which it spirals and climbs, choking it with fragile beauty, and the clay soil and southern dose of sun, and its dangling and swaying, and the rain and wind and multifiore garden, and this house and occupants, and the birds, bugs, and neighbors, and all the other ands that should trail invisibly from the word wisteria in an endless string of relations that evolves during the whole of its vigorous and purposeful life. When I call it wisteria, it becomes smaller, a symbol I use to communicate with others of my kind, whose own version of wisteria may be different from mine. And yet, words are the passkeys to our souls. Without them, we can’t really share the enormity of our lives.
Paul used to write for hours in a dreamy state, tapping into the keg of his unconscious and letting words pour. I remembered his gluing oddments at the kitchen counter, whistling, and bending one leg like a stork, while Copland’s Third Symphony boomed for the fifth time in a row in a full-scale echolalia. I remembered how he had daubed a sheet of brown butcher’s paper with a blue wash, and finally held up his impromptu map: salt flats, Red Sea, desert zones. Chuckling, he had flagged a dune where the Danakil tribe and two lost airmen would meander and clash. Then he had hummed the Copland yet again, off-key. In time, the new novel, lurching around his psyche, dragged itself away and became real. How I had loved to see him shanghaied like that, careening down the rum-soaked wharves of imagination, where any roustabout idea might turn to honest labor. How on earth could Paul survive without his words? How could we?
CHAPTER 15
WHILE PAUL SLEPT, I MET MY FRIEND JEANNE FOR LUNCH at Moosewood, a vegetarian restaurant downtown serving my idea of comfort food ever since I was a student. There we sat at a shiny oak table beside a mantelshelf of moose memorabilia, presided over by a blackboard offering the day’s specials. A novelist with short blond-flecked brown hair and hazel eyes, Jeanne had grown up nearby, in the small town of Geneva, New York, where she went to parochial school before moving to Ithaca and marrying a painter, Steve, who taught art at Cornell and moonlighted as an aerobatic biplane pilot and aerial artist (trailing smoke as he drew four-dimensional objects in the sky). She knew more about the texture of everyday life in past eras than just about anyone; excelled in kitchen and garden; and hand-stitched exquisite quilts. But, best of all, Jeanne could go from silly to serious and back again in a wink.
As I filled her in on Paul’s condition, her eyes held me in a worried hug. “He’s able to say a few more words, though they tend to be odd or arcane.” “Like what?”
“Well, let’s see . . . One of my favorites is eldritch,” I said with a fleeting smile.
Jeanne looked amused. “That sounds like a cross between an elf and a witch!”
“It does. But it means strange, eerie, weird, as in: ‘A flying saucer arose silently from an eldritch swamp.’”
“When did he learn that? Or where, for that matter.”
“Heaven only knows.”
My memory flitted to the day before, when Paul had stood at the living room window watching evening’s grays smoke through the treetops. For long moments, he’d looked pained as he’d groped for the right words. Finally, turning to me with a satisfied look, he’d uttered the one word: “eldritch.” Though it rang a distant bell, I had to turn to a dictionary, after which I’d found Paul again, still standing at the window, watching the sprinkler’s rhythmic salaams to the garden. Taking his arm, reverently, I’d repeated: “eldritch.”
“But he still doesn’t understand much of what anyone says to him,” I continued. “Reading, writing—all that’s going so slowly. He’s not accomplishing much with the speech therapist. And he’s still having trouble swallowing. . . . But I don’t want to sadden you with my grief,” I said abruptly, cutting my account short.
“Are you kidding? You’re my oldest friend in town. I’d be hurt if you didn’t tell me what’s happening. It’s awful. I can’t imagine how I’d cope if, god forbid, something like that happened to Steve.” I watched her face blanch in fear, then soften once more, bearing sympathy.
“How are you doing?” I heard her ask.
A titanic question, and unanswerable, or so it seemed. I hadn’t the faintest idea how I was. Token pleasantries wouldn’t do (“I’m-fine-how-are-you?”), and there were no fresh bulletins from my overwhelmed psyche. I was moving in a narrow range between busy distractedness and a pervasive sadness whose granules seemed to enter each cell, weighing it down, one grain per cell, just enough in sum that I walked with head lowered, shoulders rolled into a slump, feet shuffling at a gait I associated with my parents when they were elderly, not a woman of still-reconnoiterable years. I ghosted between islands of anxiety (I’m doing so little of my own work) and a fatigue that dulled my zest, decanted it. Sorrow felt like a marble coat I couldn’t shed.
“I don’t know how I am,” I said, idly stirring a mélange of French lentils, cabbage, and diced tomatoes. “I’m probably in shock, or traumatized. Sometimes it feels like I’m in a slow-motion car wreck, where the spinning never stops, and I keep trying to remember what to do—take my foot off the brake, yes, turn into the spin, yes—but nothing is working, and the car keeps spinning out of control.”
“Oh, honey, that sounds terrifying!”
“It’s that churning in my chest and stomach without the visuals. And then other times I’m in a sort of zombie haze, yet somehow speaking, moving, functioning, even making decisions about Paul’s care—but all that’s happening while I’m sleeping inside this real-life nightmare that keeps unfolding at new angles and growing deeper. Sometimes I feel so feeble, like a rag doll that’s been shaken day after day. . . . See? I told you, I really don’t know how I am. Except that I’m a mess.”
Jeanne’s eyes clouded. “You know, I bet a big source of stress comes from feeling like you’re responsible for his recovery.”
“I do feel like I’m responsible. He used to be able to look after himself. Now he can’t. That’s so different, so strange. The big question is: Is more improvement really possible, or should I stop pushing him?”
I couldn’t remember the last time my vigilant selves could leave their posts and swan around.
“What do his doctors say?”
“They don’t really know. It’s still early days. So little is known about the brain. Even less about broken brains.”
Leaning forward, she stared straight into me. “What can I do to help?”
I thought about the question for a while, as I submerged my spoon and let it fill with the fragrant stew. Finally, I met her eyes, which still held their concern.
“I haven’t a clue.”
AT HOME, I flickered between denial and anguish. In one of the denial moments, which occurred often and briefly (but at other times could upend a whole afternoon), I saw signs of the old Paul, the familiar spouse, returning home to his historic self after a sojourn away in the wars.
There he was at his desk, cackling to himself as he looked at a photograph of the Versailles Conference of 1919. A sick old man and a young boy peered side by side from his eyes. I didn’t have to ask what he was up to—I knew the mist his brain gave off when it was dreaming up a new story. He must have sensed me at his side.
Revolving toward me, unexpectedly, he said: “Gorgeous . . . name some flowers. . . .”
“Roses, lilacs, daffodils, tulips, peonies—?”
“Peonies,” he cut in. “The yellow ones.”
My mind chased around—which peonies? Oh, our peonies, the ones out front. “They really are gorgeo
us! I love their big fluffy yellow cuffs.”
“Cuffs,” he repeated slowly, savoring the word, perhaps picturing men in long-sleeved shirts with ruffled cuffs and onyx stickpins at a Manhattan soiree in the early 1900s. The perfect setting for a novel by Henry James.
“I planted that bush five years ago, and do you know I moved it to three different locations before I found the right combination of soil, light, and neighbors for it. High-strung plant, but beautiful—like one of those toy show dogs.”
“You’re plucky! And I’m . . .” He smiled, amused by what he was going to say next: “lucky. You’re plucky and I’m lucky.” He chuckled at the rhyme.
Normally, it would then be my turn to nudge the game of word dominoes forward, as in: “You’re plucky, and I’m lucky, ducky.” To which he’d reply: “You’re plucky, and I’m lucky, ducky, not mucky.” And so on. Whoever ran out of add-ons first lost. This time, I didn’t press him to continue; I wasn’t sure he could.
Still, in that moment fragrant with hope, I believed life hadn’t really collapsed all around me, that I wouldn’t just be grateful for the few crumbs of our relationship that remained, but could return to How It Was, that just-so land lost in fog.
Lying in my bay window a little later, I faced the loss more squarely. Then it crushed me with its heavy machinery, and nothing, not even a glorious vineyard of wisteria or a wren’s long cantata, could save me from feeling flattened beyond repair.
Faith is a liquor that comes in various strengths and is often flavored by chance. When I looked out over the grass where the midday sun had created a cartography of light and shadow, I had faith that each of the clover blossoms contained nectar. But my faith in Paul’s improving, healing back into language, changed from moment to moment, day to day, and when it vanished nothing filled its hollow. I found playing through my mind the last line of a favorite Robert Frost sonnet, “The Oven Bird”:
There is a singer everyone has heard,
Loud, a mid-summer and a mid-wood bird,
Who makes the solid tree trunks sound again.
He says that leaves are old and that for flowers
Mid-summer is to spring as one to ten.
He says the early petal-fall is past
When pear and cherry bloom went down in showers
On sunny days a moment overcast;
And comes that other fall we name the fall.
He says the highway dust is over all.
The bird would cease and be as other birds
But that he knows in singing not to sing.
The question that he frames in all but words
Is what to make of a diminished thing.
What to make of a diminished thing, that was the question. The injury was permanent, I told myself, and Paul needed to understand that. With any luck, his skills might continue to improve some, though if they did, it would probably take years. But the lesions in his brain wouldn’t disappear, he would never return to his life before the stroke. That wasn’t a realistic goal, for me or for Paul. He needed a new perspective on who he was: not a hopelessly faded photograph of his old self, but a work in progress. And I knew I needed to come to terms with this, too.
I hadn’t realized how much hope was still woven into my consciousness, how much denial of the obvious, overestimation of small triumphs, and a hard refusal to admit that Paul, his gift, our life together as it had been, was gone. I saw that clearly now. What remained would gradually acquire its own shape and dimension, but many of our favorite things, my favorite ways of being a couple, had vanished and it was no use pretending, hoping, wishing that he would return to his old self, and me to mine. I mean to the us that once lived in our house, once furnished so much of my life, the symbiotic self spouses evolve together and cherish. There was no going back to how things were. A hard truth to accept, even if no one and nothing is ever what it was.
Everywhere I looked, nature flowed indivisibly as one stream of atoms. Paul had merely borrowed 4 × 1027 carbon atoms from the universe, which he must one day return, maybe as lichen or tree, either one the journeywork of stars. “I bequeath myself to the dirt to grow from the grass I love,” Walt Whitman wrote in Leaves of Grass, “If you want me again look for me under your boot-soles.” Nothing, not anyone, is an unchanging event, no blade of grass or self exactly what it was a moment ago.
I tried my best not to compare his new state to how he was before the stroke, but rather to how bad off he was at the time of the stroke. Before the stroke no longer existed. But it was hard to hide my anguish. And he often looked at me with eyes clearly saying: Who are you kidding, you fond fool.
CHAPTER 16
A MIDDLE-AGED HOME HEALTH AIDE I’LL CALL FRED HAD joined us at first, a quiet man with a shaved head, freckled face, and genteel manner, who collected antiques and loved to cook. He had ways both strong and delicate, could hoist a grown man out of bed or arrange flowers in tiny pots with tender precision. One day, after he knew us for a while, he confided that when he was in high school his mother, learning that he would never be in a traditional marriage, encouraged him to take a course called “Housekeeping for Bachelors,” which he had relished. A knowledgeable aide with an understanding of the health care system, he often prepared Paul’s pills and routines and helped him dress and safely roam the house. Fred was a real character, but I’m going to tell you very little about him, because in time we discovered that he was stealing cash from Paul, using Paul’s credit card for personal expenditures, and other misdeeds, and we had to let him go. This was our first experience with “elder abuse,” and it took me the longest time and clearest evidence to accept. Paul suspected Fred sooner, and I’ve since learned that some people with left-hemisphere stroke, like Paul’s, actually improve their skill at interpreting people’s faces and catching people in lies. Unfortunately, I’ve also learned that elder abuse is all too common, and not always easy to spot since one isn’t expecting it and the abusers can be charming. It seems all the more grievous since the victims are the most sick and vulnerable among us.
Fred’s larceny soured Paul on the idea of aides. It was hard for him to understand why home help was so important for me, that, just as he found struggling to talk exhausting, I found it exhausting to interpret. It meant changing my mental gait and slowing way down, not peacefully, allowing moments to gather and stream away, but strenuously, as a sort of code-breaking that took total concentration. I was a spy in the service of love. There was no way to do it nimbly, or hastily, or indefatigably. After several hours, I’d blow a mental fuse, my brain would stop decoding, my head would ache, and I’d need to rest. Casual couple’s chitchat that used to wash over me without working the brain too hard had become strenuous. I reminded myself how frightening and formidable it was for Paul. Sometimes, guiltily, waiting for five or ten minutes for him to find words to express one simple thought, I might feel antsy, the physical equivalent of Get on with it! When rushed, I didn’t always have the patience to sit, sit, sit, waiting for him to make himself known. But mostly I understood, felt sorry for him, and sat.
Fred could wait for longer spells while Paul cast about for words, indeed spend most of the day in quiet reveries. He didn’t talk much to Paul, and I knew that Paul needed an “enriched” environment every bit as much as lab rats do to prompt his brain cells to grow more connections. I wanted him drenched in words every waking hour. And he needed to enjoy the chatter and try to pay attention, not let the words become background noise. I remembered Liz, the energetic nursing student who had nimble skills, a real gift of the gab, and had gotten along so well with Paul. When I phoned her, I explained that the dress code was ultracasual, chatter essential, and she’d be in the pool with Paul a lot.
On one of those summer days whose pristine blue skies make you stand and gape, the blue of calendars, David Hockney swimming pools, or Paul Newman’s eyes, Liz arrived wearing a s
unny red dress with a tropical floral print. Oddly enough for someone who only ever wore swim shorts or velour jogging suits, Paul had a savvy fashion sense, and as she entered he glanced at her dress and back at me, nodding his approval. The dress was sleeveless and showed off very muscular, able-bodied arms. Her face was deeply tanned, and she had the look of someone who really enjoyed the physicality of life.
Liz would become Paul’s part-time nurse, literary assistant, and gal Friday, and from the outset, she seemed uncommonly cheerful. Every morning, she would test Paul’s blood sugar and inject him with Lantus, a long-acting once-a-day insulin, if his fasting blood sugar indicated he needed it. Self-monitoring was out of the question, though he probably could have injected himself. He couldn’t read the fill lines on the syringes or safely interpret the numbers on the test meter. Numbers no longer made any sense to him at all. An 8 could just as easily have been a snowman, a 1 could have been a telephone pole. He didn’t know his address, phone number, birthday. Numbers didn’t just perplex him, he impressively mangled them.
While Liz sat at the kitchen table filling syringes, holding each one at eye level so that light shone through it, sighting tiny silver bubbles and dislodging them with a fillip or two, Paul and I stood at the picture window watching a flock of starlings plaster the sky, back and forth, in synchronized swipes. Then they funneled down and settled on a fence.
“How many birds?” I asked.
“Four hundred . . . no, fifty,” he said uneasily.
“Which is more,” I slowly posed, fifty . . . or four hundred?”