One Hundred Names for Love: A Memoir Read online

  I later learned that what Paul had felt was quite different: “Here she is cuddling her overgrown baby, who had once been the terror on the cricket field. Her blue baby, her deformed baby, her armless protégé, at once older, younger, doomed, a magnet for any human task, and therefore enormously to be pitied, before being put down, buried, grave-stone naked, and maybe plundered by grave-robbers and carted away as a freak.”

  Being maternal when he was in such a fragile state felt like simple caregiving. But for him it stung as a humiliation, because he was no longer someone who could take care of himself. The Paul he knew was already dead and buried, as far as he was concerned, and I was left tending a freak. He had become repugnant to himself, pitiable, a monster. And he assumed I must be feeling equal disgust.

  At the time, I hadn’t a clue he was thinking any of this, or even that he could, when he seemed barely conscious of what was going on. The animal part of him, in pain, accepted my caring. But the part of him watching himself in that pain didn’t believe I could ever respect him again. None of this crossed my mind. I couldn’t risk knowing it. No one could and continue caregiving. They’d feel so unappreciated and wronged that it would drive them away.

  Instead, alternately proud and worried, I sat nearby, mentally taking the hurdles with him, frantic for his success, silently cheering him on.

  “That sounds good,” Kelly said. “I’ll look for it.”

  “You . . . like?” he suddenly asked, cocking his chin toward her in expectation of a response.

  “Oh, I bought a book by that author the Iranians are after.”

  “S-sal. Man . . . Rushdie,” he said proudly, sticking out his chest and grinning like a schoolboy. Surprised, we all laughed at the correct answer.

  After forty minutes, Paul fell back in exhaustion and Kelly met with Dr. Ann and me in the hallway, where we discussed his gains. Hope for the best, but prepare for the worst. The barometer of our hopefulness had risen a little and at last the air felt lighter. Any progress, however small, was a gift, and I rejoiced. Surely this meant more improvement was still possible? Even if full speech didn’t return, even if he didn’t write again, even if he became easily confused, at least he wasn’t doomed to spend his remaining days ranting little more than “Mem, mem, mem, mem.”

  CHAPTER 11

  ON A SUNNY MORNING IN LATE JUNE, I FOUND PAUL sitting on the edge of his bed, waiting for me, looking eager and excited. I’d seen this look before. He was perched like a professor with a train to catch, and despite his hospital gown, I could picture him in a bow tie and tweed jacket.

  “I have . . . s-s-surprise,” he spluttered with some effort.

  “You have a surprise for me?”

  Smiling proudly, he straightened his shoulders, lifted his chin, took a slow, deep breath, then proclaimed, “I speak good coffee!”

  “You speak good coffee?” I must say I was a bit bewildered.

  He nodded yes. “I speak good coffee,” he repeated.

  “Coffee?” I asked, eyebrows raised like Tudor arches, signaling,

  Are you really sure—coffee?

  “No,” he said, laughing, “I speak wonderful English!” And so he did.

  “There’s big difference!” he said gingerly. Overnight he had indeed improved, even more than he was aware of. Since the stroke, I’d never seen him so excited, so hopeful, so fluent.

  “You’re talking!” I gushed. “Well done!” We grabbed hands and squeezed hard. For a few more moments we talked, or rather he talked, almost normally, words handy and obedient, pouring out slowly. I found them refreshing as well water.

  Kelly arrived on her usual schedule, and with an eager smile I informed her: “Paul has a surprise for you this morning—he’s speaking much better.”

  But when she greeted him he clammed up, as if shy. Part of aphasia’s bane is difficulty speaking on demand. Off-the-cuff, unpremeditated replies (“Was it really?”), uttered before he realized it, could sidestep the aphasia and flow much more easily. Kelly whisked him away for thirty minutes of speech therapy and another swallowing evaluation, while I remained in his room with his checkbook and bills, to catch up on bookkeeping. Paul had always kept track of half the household expenses, and despite the chaos I needed to find all the outstanding bills and make sure they were paid. As I sat by the window, I watched the clouds shape-shift over the lake, briefly recognizable at times—train, camel, long-horned antelope—because my brain’s interpreter kept trying to ID them. Was that still happening in Paul’s brain, or was his interpreter too wounded to care?

  More typically, Paul came out with many sentence fragments, but was cruelly frustrated and dissatisfied with them. He could write his name legibly only in big block letters. I still greeted this with relief, as if he had somehow reclaimed a tiny fraction of himself with those four letters. Not P-A-U-L, but the spiral font encrypted in his cells. Or the foursome that buoys one up: H-O-P-E. And during speech therapy, when Kelly asked him to tell her something about himself, he thought for a moment, opened his mouth wide as if he were testing rusty old machinery, and finally said: “Many books . . . We go . . . Fl-florida . . . for fourteen, no one hundred forty, no fourteen, no four months,” and “Swim.” Then he shook his head at the woefully incomplete answer.

  At breakfast, scrambled eggs tripped down his windpipe and he coughed violently, retching as if he were trying to expel his stomach. When he drank a little thickened milk from a cup, he uttered a cough so flannel-thick and long that it scared me. He looked terrified. Unflappable, Kelly coached him how to cough from deep in his diaphragm, while leaning forward, until he spat the milk up out of his airways, spraying white like some venomous snakes. Then she spent a long while explaining—yet again—his swallowing danger, why he had to sit up straight while he ate, why he should swallow each bite of food before putting another in his mouth, why his drinks had to be thickened. She taught him to do tongue sweeps after swallowing, to make sure that he didn’t still have food tucked in a numb corner of his mouth. Nodding solemnly, Paul responded as if hearing it all for the first time, not the umpteenth, and I saw how much trouble his brain was having storing short-term memories.

  Long-term memories were another cat entirely. Because it takes the brain a while to store a long-term memory—sometimes days—and his injured brain wasn’t fully back in the memory-storing business yet, I knew he probably wouldn’t remember any of this hospital time at all. Only I would. That startled me. Never before did I have to store someone else’s trauma—not only live it at my own cost, as real gut-wrenching, but also replay it later when he asked what happened to him, as inevitably he would. I felt oddly like I was taking over some of Paul’s higher brain functions (decision-making, interpreting, memory storage), shouldering the mental burden and adding it to my own. One brain laboring for two.

  Not a complete novelty. Despite feeling separate, our brains regularly assign various functions to others: teachers, nannies, doctors, policemen, farmers, et al. And cede momentous and trivial work to spouses every day. You do the taxes, I’ll work on the loan application. You do the grocery shopping, I’ll take the cat to the vet. You handle the garden, I’ll mow the lawn and shovel the snow. I’d always been the one who organized our travel to Florida, run the house, hired workmen. Usually I was aided by lists on paper or computer, grateful for the handy and uniquely human gift of being able to store information outside of the brain. But this was a whole new order of magnitude and of stress. I could barely remember the details of my own life and be responsible for my own fate. I wondered how much that contributes to “caregiver stress,” heaping a brain with more executive tasks than it was designed to handle?

  I felt pain in my fingertips, stomach, and toes. What a heartbreaking struggle for him. How would I fare with only a rat’s nest of wrong words, an irregular heart pinwheeling in my chest, limbs tired old barn slats, the dregs of Thick-It in my mouth, sense
s screwy as fun-house mirrors, unable to swallow safely or dress myself, imprisoned in a noisy castle light-years from home, keyless and clueless, prickled by strangers, apocalyptically bored, and without even the words to file a petition because some fiendish constabulary raised Cain every time I spoke? And what if, no matter what I said, or how—cogently and coherently, with old-time finesse, it seemed to me—no one understood?

  I couldn’t imagine being in his shoes for a day, let alone weeks . . . and a lifetime? Horror of horrors, what if it were a lifetime? Could I stay buoyant in the maw of such tragedy for so long? I didn’t think so. Don’t jump the gun. And don’t let on, I thought. Catching my breath, I tried to calm myself long enough to calm him.

  After Kelly left, with great sadness Paul presented me with a mangled aphorism: “The word man is perhaps not the right one for the thing I see when I hear it.”

  “Not now, anyway,” I said, “but keep trying. You’re speaking, that’s the main thing. . . . I know how exhausted you must be. How about a nap?”

  While Paul slept, I blearily went downstairs to the cafeteria, a large room containing deli & grill, salad and soup bar, refrigerated grab-and-go foods, which opens out into a dining room with polished wooden tables, and many windows. It had been too stressful a morning, and I could feel the fabric of my being fraying. I needed a respite, the solace of losing myself once more in an equally real way of knowing, but one less devastating. I felt my mind begin to float, and the naturalist step out of the shadows and search for an agreeable tableau: lower parking lot with colorful metal carapaces gleaming in the sun; the front-door procession of people with faraway expressions; a small grassy bank and bench beside a purring creek; other diners. My eyes were drawn upward. Designed with sweeping arcs and many round inset lights, the ceiling seemed to display the starlit arms of galaxies. Not by design, I thought, but abstractly, as a kind of archetype of the night sky, a familiar sight the brain encodes from childhood and tells time by, or uses to chart its way through the world. I smiled. Even in a hospital cafeteria, we bring nature indoors with us, can’t help but surround ourselves with its forms. A faint harmonious music hovered in the air, nothing loud or intrusive or even identifiable enough for my brain to puzzle over. Why do we need to fill the air with sound? Maybe because, in our deepest imaginings, we’re more at home with the ambient sounds of nature. I was glad of such renegade thoughts, which tugged my mind far away from Paul and his illness. As the crust of my world continued cracking I needed more and more time-outs. Another one soon presented itself:

  I shared the elevator with a female volunteer pushing a small wooden bookcase on wheels. A glance at the titles made it clear they were meant for casual readers who needed a little gem to engross them or pass the time, but nothing they wouldn’t mind leaving unfinished. The lowest shelf was full of slender children’s books with shiny colorful covers. I felt a wash of nostalgia, and then my mind leapt through long-dormant synapses and memory alleys to something I hadn’t thought about in years—the bookmobile, which had stopped only two blocks from my house in suburban Illinois when I was seven years old. Aladdin’s cave on wheels, it had looked like an unassuming trailer or bus, but inside the walls were lined with shimmering volumes that smelled of wood shavings, silver polish, and dust, just like a real library. It had solid glossy wooden shelves, a card catalogue, and moveable steps for browsing the higher books. I couldn’t reach them anyway, since the steps only added three feet to me, but the children’s books were shelved at ground level, so that I could sit on the carpet and choose half a dozen to adopt.

  While the elevator paused and we waited for a patient in a wheelchair to slowly navigate the door, I continued to luxuriate in the memory for as long as I could before returning to the here and now. I recalled the twelve-by-eight-inch cream-colored cardboard print of a suitcase named “World Traveler,” given to me the first day I started taking out books. Every week I received a new stamp to put on my suitcase, beginning with a pink one of a bookmobile driving down a country lane, then one of Norway, India, South America, Africa, Spain, Holland, the U.S.S.R., Sweden, Scotland. Somewhere along the line, I had proudly earned a blue satin ribbon that said “Reading Achievement Award,” which the librarian had stapled to my suitcase with a flourish. I was especially fond of the little books with golden spines, like those on the hospital cart’s lowest shelf, in which Santa rode his sleigh across the sky or Pinocchio danced. My love of books began there, in that slender kingdom on wheels. The short elevator ride beside its ghost had transported me. A sweet taste of time-travel. Proust had his madeleine; for me, wheeled bookshelves.

  When the elevator doors opened again and the book trolley rolled away, I was half tempted to follow, its novels a Pied Piper for a bibliophile anxious for more escapism, but I turned in the opposite direction instead and made my way to Paul’s room.

  I found him awake and tousle-haired with a barely touched lunch tray in front of him. He looked like a wild child, an escapee from one of the bookmobile’s adventures. Before I could say where I’d been, Kelly swept in for the afternoon’s speech therapy session, and I took my usual seat in the corner, beside the windows, and far enough to Paul’s right to be invisible to him.

  “How are you feeling this afternoon?” Kelly asked Paul.

  “Feel as like a rising just dust in ear,” Paul answered. “Wasn’t like this morning.” Puzzled, Kelly noted it on her clipboard.

  I loved the found poetry of a rising just dust in ear. It sounded like a biblical description of humankind. But I knew what he meant.

  “Your ear is feeling tingly?” I asked. “And it started recently?”

  Turning to me, he nodded yes.

  Kelly thought it was a good sign, that he might be getting some sensation back in his numb cheek.

  With his cramped hand, Paul found writing very difficult, so Kelly set a large portable computer in front of him and asked him to type his name. She explained that some aphasics can type what they want to say into a computer that speaks for them. Paul looked utterly bewildered, as if he were viewing a device from science fiction that would turn him into a fly or hurl him into a black hole. She pointed to the letter P to get him started. He typed PPPPPPUUUUUUFFFFFF WWWWWES, the letters repeating because he held them down too long. He also had trouble with spelling, and with scanning the keyboard to find the right key (he couldn’t see the letters off to his right).

  “Don’t think trots any good,” he reported glumly, and pushed the contraption away.

  Despite his gloominess, over the following days his speech and comprehension continued to slowly improve. Every session, Kelly showed him pictures and asked him to describe them, and when he said anything at all intelligible, he often produced curiously quaint answers: “russet” for brownish-red, and “imposing battle scene” for forest. But he invariably tumbled letters, and “sailed away” became “selled outway,” “igloo” became “legalo.” Still, he produced many triumphantly lucid short phrases, such as “It doesn’t look swollen” (about his numb lip), “No use at all,” “Either a semester or fifteen years,” “I can’t speak.” But asking him to describe a picture fetched little response. He did much better with yes/no questions. I was beyond shocked. What had become of the wordsmith? Was his lifelong lavish imagination completely obliterated?

  Kelly showed him a picture of an apple. “Can you describe the picture?”

  Paul looked hard at it, tilted his head quizzically, as if to dislodge a memory, but stayed silent.

  Kelly asked slowly: “What color is the apple?”

  Paul didn’t answer.

  “Is it blue?” Kelly asked.

  Paul thought. “No.”

  “Is it orange?”

  “No.”

  “Is it red?”

  “Yes.”

  “Good! Now what shape is it?”

  Paul remained silent.

 
“Is it square?”

  “No.”

  “Long?”

  “No.”

  “Round?”

  “Yes!”

  “Good. Now what do you do with an apple?”

  Paul twitched his nose, as if at a bad smell. I knew he absolutely loathed fruit.

  “Nothing!” he pronounced with a shiver.

  Kelly explained that you eat an apple. Paul looked dejected. But I felt encouraged by the flicker of his old self; he had made a joke, albeit a private one, which she didn’t get and he hadn’t the words to explain.

  Sadness stole over his face, and he glanced at me with questioning eyes.

  You used to find it so easy, I thought. What to do with an apple, other than eat it? The playful answers would have flowed. Dip the halves in paint and stencil a wall. Make a cinnamon-and-clove-studded pomander to hang in the closet. Play tennis. Carve a jack-o’-lantern. Build a beehive . . .

  I smiled at him with a closed mouth, lifted eyebrows, and nod of the head, trying to convey: I understand. Keep going. You’re doing fine.

  His face softened a little, and he returned to the cards.

  Kelly showed him a picture of a man in a suit walking across a park, and urged: “Describe the person in the picture.”

  A long pause. “Authoritarian,” Paul said.

  Kelly’s brow wrinkled, and her lips parted in a small smile. Patients didn’t often respond with a sophisticated, polysyllabic word. All she said was, “Good. How about the next one?”

  People in the next two pictures elicited more one-word answers: “Plebian,” “Amateurish.”

  Paul seemed to be seeing the faces of the people in the pictures rather than what they were doing, maybe because the right hemisphere dominates when it comes to reading faces.

  On its rampage, the stroke had seared his left angular gyrus, an injury that typically leads to anomia, difficulty in finding words and naming objects or describing pictures. Categories slip through one’s mental fingers. If lesions disconnect the visual cortex from the language centers, a patient like Paul, upon seeing a word, can’t submit the news and summon the sounds that go with it. Reading and writing crash. The brain doesn’t really need them, after all. Spoken language may be an ancient delirium, roughly 2 million years old, but reading and writing are recent fetishes, only about 4,000 years old, and by evolution’s standards, sheer luxury.