One Hundred Names for Love: A Memoir

  “In terms of language,” I asked tentatively, “what do you think?”

  She paused a moment to frame her thoughts, as fluorescent light showered down on us like silently accumulating snowfall.

  “Long-term, I hope he’ll be able to communicate his basic wants and needs,” she said slowly, allowing time for the words to sink in, “verbally or in gestures or maybe using a communication board, with about 80 percent accuracy.”

  Basic wants and needs, I heard her say. Basic wants and needs. The phrase spun in my mind. As if that could ever be enough for normal people, let alone word-besotted creatures like us. Life lives in nuances and innuendos. How could Paul’s immense cosmos of words shrink to the size of a communication board overnight? How could ours?

  “Short-term,” she continued with maddening practicality, “we’ll be striving for about 50 percent accuracy in naming common objects. I’d like him to be able to choose between two items, when you name them, about 80 percent of the time, and follow simple commands with 80 percent accuracy.”

  Would you like the “pants” or the “shorts,” the “pillow” or the “blanket”? That would be life from now on? My thoughts spiraled, and I felt not just psychic pain, but a specific ache I could locate in several muscles between my ribs. Global aphasia. Woundingly right. Our couple, DianeandPaul, had been a ghostly continent of two countries. What would become of it? Would a boundary of silence fall between us? No more Paul touching voices by telephone many times a day when I traveled? No more Paul calling to me across the hallway, “Poet, what’s a word for . . . ?” No more Paul tucking me in at night and leaving refrigerator notes in the morning? No more confiding, whispering intimacies, playing with words, sharing the world? It’s beastly, I thought, completely unthinkable. And if he couldn’t read or work, what would he do all day? Probably want me to keep him company—and that was understandable—though devastating to my work, my freedom. I would need to be able to write for my own joy and sanity, but also now to support the household and help pay for Paul’s care. Still, I felt deeply ashamed to be indulging in such self-centered worries.

  When Kelly left, I went to a windowed alcove just beyond the Rehab Unit doors and wept. Out of shame that I couldn’t fix things, and out of grief. I’d never before had to mourn for someone who was still alive. I mourned for Paul, and I also mourned for myself, and for the loss of the word-drenched companionship we’d created, due to a tiny land mine traveling through his blood vessels. Beneath our civilized hair and hide, and beneath awareness even, we easily destroy ourselves. To be so godlike, and yet so fragile. But it didn’t help to lump him with the rest of humanity. The loss was too intimate. It had settled in like a lonely lodger with a scrapbook of memories.

  For example, this was Sunday, a day when, before the stroke, Paul usually viewed one, sometimes two, English premier-league soccer matches on television. I remembered a conversation we’d had ages before, when I was hanging out at Giants Stadium, home of the New York Cosmos soccer team, which had collected a peerless array of international players. I’d agreed to write several articles, and was deeply embedded in the soccer world, absorbing atmosphere for a novel. In the press box during halftime, I’d phoned Paul and found him in a sort of halftime, too, in his office between seminars, eating a can of smoked kippers.

  “What’s up?”

  “Oh, nothing much,” he’d answered without missing a beat. “The usual struggle for survival with its attendant erosion of moral standards and so on.” A mouthful of fish and hungry chewing. “What’s new with you, doll?”

  “I’m going to Bakewell to interview the tarts,” I’d teased. “Actually, I thought I’d go to the Cosmos’ training camp in the Bahamas and interview Beckenbauer.”

  Franz Beckenbauer, the smart, elegantly sexy player who somehow managed to combine grace, precision, and power. Whenever I watched him gather the urgent rhythms of a game, a mental depth charge went off inside me.

  At this, Paul had laughed so loud that I worried he’d drop the phone.

  “Strictly business,” I’d insisted. “I want to ask him about the ceremonial violence of the game. I know he’s a big opera fan—maybe the two connect for him. You know, what he hears and sees while he’s playing. Stuff like that.”

  “It’s bad enough you want me to believe you’re being honest with me,” Paul had said with an edgy twinkle in his voice, “I’m also supposed not to notice when you’re not telling me the truth.”

  “If you always tell the truth, you never get into trouble,” I’d replied with as much innocence as I could muster.

  “Or if you always lie,” he’d countered.

  “Okay, so I’ll be having some fun, too. What can I tell you, I’m in love.”

  “With him?”

  “With the game, silly.”

  “Which game?”

  “Soccer!”

  “What does soccer have to do with the game?”

  “Where did I take the off-ramp from this conversation? Which game are you talking about?”

  “Which game are you talking about?”

  “Ahh,” I’d said slowly, “I see. Well, I’m not sure.”

  “Don’t let me know when you find out; I love you as unfathomable as you are.” The sound of ice tinkling in a glass, as he drank the evening’s first scotch.

  “Not even a telegram from the Bahamas?”

  “What could it say in under fifteen words?”

  “. . . How about habeas porpoise?”

  What a crazy season that had been, splitting my focus between teaching rarefied graduate poets and following the exploits of men whose genius was physical. I never did go to training camp in the Bahamas, never did finish the soccer novel. But Paul shared my enthusiasm for soccer, and we often watched games together on television, sometimes spreading a blanket on the floor and eating a store-bought rotisserie chicken with yellow mustard and canned asparagus, our “soccer picnic.”

  With a tender smile, I eased the memory from the heavy slate of my mind.

  In the hallway, a table passed on which metal instruments inside a gleaming bowl rattled with a sound like machine-gun fire. Somehow its bleakness shook me out of my mournful trance. At least I could still give comfort and affection, that part remained. But was there any hope he might recover?

  I knew from my studies that what we used to think about the brain—that it’s immutable and we’re born with all the brain cells we’ll ever have—was wrong. Brains are surprisingly resourceful, they can adapt and grow, forge new neural pathways, redirect signals, and sometimes even mint a handful of fresh neurons. Unless damaged beyond growth or repair. Could anything be done? Clots had stopped oxygen from reaching the deep, central language areas of Paul’s brain—cells had suffocated and died. “Time is brain,” the medical adage goes. During every minute without oxygen, a plot of brain loses 1.9 million neurons, 14 billion synapses, 7.5 miles of protective fibers. After only twelve minutes without oxygen, a pea-sized chapter of brain dies. His body was still alive, but his mind was a specter of itself. Yet these were early days, his brain was still swollen and inflamed from the stroke. As the neurons cooled, survivors might stir among the wreckage.

  To keep my spirits up, I often reminded myself of the brain’s plasticity, how it can modify itself, effloresce, revise its habits, unearth new skills. Throughout our lives, whenever we learn something, the brain creates connections or revives old pathways, neurons grow new twigs along their branches and some of the branches themselves become stronger. A brain can rewire itself. We do it all the time when we become doctors, master the bicycle, or learn to use an iPod. Expert violinists develop more motor cortex for the busy left hand than for the right. London taxi drivers increase the size of their hippocampus from memorizing thousands of routes around the city. But how often does a violinist have to perform a tricky movement’s many parts before reall
y nailing it? Probably hundreds of thousands of times. After all, they practice for several hours every day for years. Learning how to ride a bike or drive a car or even pilot a space shuttle doesn’t require as much rehearsal.

  Learning most things by rote, the brain keeps digging at something until it creates a channel along which messages can flow. How spiritless and stale that can be, how wearisome and boring. Or how seductively exciting, if it’s something you love. A born acrobat, the brain schools itself, becomes its own taskmaster. That takes focus, industry, and muscle. Not everyone can be bothered. Others haven’t the zest to try. A college athlete, Paul grasped the piety of training day in and out. And as someone who halfheartedly practiced violin when I was a girl (and never got past the stage of sounding like I was torturing small creatures), I knew the diligent rigor every victory would take. As if it were an ancient Greek god, I begged the spirit of Plasticity, the brain’s knack of changing as it learns, to rewire itself based on all of Paul’s efforts. Press a hand into clay and the clay changes to record the shape of the hand. Photograph a hand and the film changes to retain the image of the hand. From daily pressure and exposure, Paul’s brain might change itself, probably by reassigning some lost language skills to surviving neurons. How long would that continue, I wondered, and, more importantly, how much ground could he regain?

  For now, the only remnant of language he had was the one solitary syllable: “Mem, mem, mem.” He groaned it, he whispered it, he uttered it civilly as a greeting, he barked it in anger, he solicited help with it, and finally in frustration, when none of that worked, he sat upright in bed and spat it out as a curse.

  CHAPTER 5

  RAIN STREAKED THROUGH THE AIR. CAR WINDSHIELD wipers ticked like out-of-sync metronomes. In the hospital parking lot, blue-faced people, squinting with eyes thin as razor blades, ran toward the building. Others death-gripped umbrellas, and some jogged with a newspaper or magazine held flat overhead, as if waiting for an updraft. I felt the peal of water on my hair, trickling to my scalp, then spilling over my forehead, through my lashes, around the ridge of my nose, in rivulets from my chin. In the front vestibule, I shook the water off and headed for Paul’s room.

  He was standing at the window.

  “Nice day for ducks,” I said gently.

  Paul stared into the rain without answering, his face bold, bluff, and nearly perpendicular, like some coastlines. He was trying to remember something that had almost faded. With great effort, he could remember a little of how he used to see and feel the world, but not easily. He’d lost track of his body’s edges, and yet his life felt completely internal. A loud grating background noise drowned out everything; he was even aware of it while he slept. Raindrops sounded like they were being fired by nail guns.

  This sensory warping was not unusual. Even a migraine is enough to overstimulate the brain, causing changes in nerve firings, and in the ebb and flow of blood vessels. As a lifelong migraine sufferer, Paul knew that caterwauling, when the neurons don’t respond right to anything. I knew it, too. Artists often are migraineurs, who report greater light, sound, smell, touch, taste sensitivity. His migraines had been worse and more frequent than mine; but we’d both experienced them with turrets of flashing light. A stroke whips up nerve and blood flow changes on a tempestuous scale. I didn’t envy him the sensory drubbing.

  “Hey there,” I tried once more, this time taking him by the arm. He let me guide him back unsteadily to bed, tuck him in, and talk idly, just for the sake of talking, hoping my voice might soothe us both. Then silence thickened, until the air felt caked with it, as we sat absorbing the sights and sounds of our strange new habitat.

  The Rehab Unit’s rhythms and the hospital’s had begun to envelop me. For three weeks, during Paul’s kidney infection, I’d spent a lot of time at the hospital, but it was really only in this fourth week, when I wasn’t so much visiting the hospital as living in it, that I became aware of its subtle effects on a patient’s (and visitor’s) psyche and nervous system. Enter most public buildings and it’s bound to feel unnatural. Nature loves a curve or a spiral. We humans, on the other hand, seem to worship sharp edges. We build our sermons in steel and glass. Sunlight slanting through the hospital windows bounced off the white tiles and miles of linoleum floor. Long stray shafts of light struck the conjoined cubes, mesas, and countertops coated in fake veneer. Sometimes a spike of sun flashed off stainless steel pan, instruments, wheeled table, or tall IV pole sprouting a medusa of tubes.

  Outside, the sun’s light fell into shadows as flighty blues that deepened or flickered with the changing hour. Inside the hospital, cast mainly by overhead bulbs, flat shadows stayed put, signaling the brain that the sun was always at noon. And only one season existed: an austere, bedridden, air-conditioned winter.

  Although the summer sun was a mirrored disco ball, whose heat was quickly ripening the local grapes, we couldn’t feel a lick of it because the windows didn’t open, despite the folk wisdom of fresh air being good for the sick. A quarter of an inch of glass was all it took to separate a patient from nature, just when he felt derelict and adrift anyway, and scared out of his senses. Small wonder that in city hospitals patients with a view of trees heal faster than those forced to stare at buildings.

  Nothing starches the mind quite like the hospital’s array of antiseptic smells and colors. The visually stark, sharp, false, and sanitary greeted us everywhere. Most of the interior landscape was frosty white: sheets, pillows, curtains, coats, shoes, porcelain sinks, toilets, and a “whiteboard” on the wall where nurses sign their names when shifts change. I don’t know why we classify white as a clean color, healthy, hygienic, wholesome, and even innocent, epitomized by a bride’s white dress. To the people of China, Japan, Vietnam, and Korea, white is the color of mourning and death. But for us it communicates all that is sterile. Stiff white blankets, liners, pads, pillows, and linens cocooned Paul’s hospital bed. I sometimes saw the draped sheets as white flags of surrender. But I didn’t have Paul’s happy memories of cricket “whites.” Since cricket was a summer game, players wore white to stay cool in the afternoon sun. Long ago, his mother had knitted him a white cricket sweater, laddered with white cables, to protect her boy from the chill of early morning or evening play.

  We existed among a host of pervasive clean smells: stale disinfectant, and heated bleach from the small armada of washing machines and dryers in the basement. Sometimes these were joined by the sweetness of infection; the cheesy smell of men’s sweat, the oniony smell of women’s; or sickbed urine that smelled of must, maple syrup, or rancid bacon. None of these oddities really mattered in the grand scheme of health vs. disease, but they jangled the senses, they didn’t inspire calm.

  Strangers in a strange land, we slumbered among unfamiliar constellations. At night, too jittery to sleep but too tired to drive home, I sometimes roamed the empty hallways. Lightning-bug lights flashed from nearly invisible machines, green auroras swirled in the imaging rooms, dull light poured from the sconces of office windows, and in the larger wards, the nursing stations flickered with the St. Elmo’s fire of computer screens, on which I glimpsed parts of bodies parading: a CT scan of the abdomen, an MRI of the brain. I marveled at how computers can be trained to display the body three-dimensionally.

  Then, returning to Paul’s room, I’d startle at every noise while I half slept in a reclining chair by his side, on the alert in case he needed help, in a room never quite dark enough to resemble night, with a gust of light from the hallway shining in like a low unmoving moon. Yellow, white, and red eyes blinked among the hanging vines of wires and tubes.

  Phantom hospital staff entered the room throughout the night, in what sometimes looked like an alien abduction scene—Paul in bed, being probed by shadowy creatures inordinately interested in body fluids. I chuckled with a wave of black humor. He’d been fascinated by the possibility of extraterrestrial visitors ever since the summer day year
s ago when he swore he saw a cigar-shaped UFO hovering above him in the swimming pool, hugely present 1,000 feet above. He’d insisted that, with strips of windows visible, it looked nothing like a mirage or apparition, but floated tangible and still for several minutes, then streaked away at an unearthly speed. When he told me later about the sighting, I assumed it was military, experimental. Not he. And now here he was, brain-rattled, and peered at by creatures dressed all in green or white, some wearing oddly shaped hats or coats, inspected in darkness by alien hands.

  Each morning, Paul woke up confused, his sense of time and place utterly muddled. Strangers spiraled around him like flies pestering a wound, the standard hospital routine of people barging into a patient’s room at odd hours to check vital signs and inject or remove fluids. They came from everywhere, unannounced, this remedy of aides and nurses, sometimes with a nursing student in tow. As shifts changed, each new nurse breezed in with stethoscope and blood pressure cuff to do a physical exam, take temperature, listen to lungs and heart, attach a snakehead-shaped clamp to one finger to test oxygen level, and prick another finger to test blood sugar. Later to reappear with a syringe to give a jab of insulin. Doctors swept in for consultation, and I was afraid to leave the room for fear of missing them. At least once, a social worker glided in with notebook and questions: “How would you describe your support group?” “How many stairs do you need to climb to get into your house?” “Do you have a house with one or multiple floors?”

  At times they seemed to arrive like a long line of leaf-cutter ants, carrying not clipboards but kite-like bits of leaves to use as compost in their fungus gardens. A cacophony of caregivers. Speech therapists. Physical therapists. A dietary specialist brought menus to be filled out, even if the patient couldn’t speak, write, or read. Food service delivered plastic trays, returning later to collect them. A brawny man or woman pushing a wheelchair, to escort Paul to the imaging department for an X-ray, CAT scan, or echocardiogram. A technician with an ultrasound machine and cold jelly to smear on his chest, before peering at his heart through a cloudy window of flesh. People scrupulously measured everything entering or leaving his body, all food and liquids, urine and bowel movements.