One Hundred Names for Love: A Memoir Read online

  I could tell the randomly arriving citizenry annoyed Paul. He was always a bit of a hermit, who found dinner parties particularly unnerving. “You never know whom you’ll get trapped next to!” he’d protest. Paul enjoyed his students, and whenever he did socialize, he spoke amiably and well with people. He always looked forward to chatting with the handyman, a salty ex-sailor who’d served in Korea and fathered eight children. Some dinner parties he welcomed, like Carl Sagan’s fiftieth birthday party, where we sat across the table from Hans Bethe (pronounced BAY-ta), the physicist who had figured out how the sun shines. Paul delighted in the revelations of science, but novelists have their own brand of physics, in which they re-create the process of life through a whole register of intricate, almost-touchable images and events.

  “What are you writing?” Bethe had asked him.

  “A novel. At the moment, the main character is constructing a Milky Way in his basement.”

  Much to Paul’s amusement, Bethe had mischievously replied, “A working model?”

  I still relish the day, at the local airport years later, when Paul and I happened to be in line behind nonagenarian Bethe at the ticket counter, and overheard the clerk say to him, slowly and in a louder voice than needed, as if he were carrying an invisible ear trumpet and must, at his age, be lost in senility:

  “Now, Mr. Beth-ee, you’ll be arriving at Gate 21 in Pittsburgh and going to Gate number 27. That’s six gates away.”

  A small bemused smile had flitted across Bethe’s creased and age-freckled face. “Oh, I think I can do the math,” he’d said.

  Such events seemed eons in the past. Post-stroke, Paul didn’t want to see anyone but me. Being swarmed over in the hospital was a recipe for exhaustion in a person who was feeling well, let alone someone speechless, anxious, and baffled. And there was no relief outside his room, either in the hallways or in group therapy, where, against his will, he was asked to mix with other rehab patients, whose afflictions reminded him of his own.

  Just as big cities can deplete you with their noise and crowds and sheer sensory overload, a hospital can exhaust you, as its changing faces and personalities blur and strangers wake you repeatedly. Like all post-stroke patients, Paul really needed rest to recover from the massive injury to his brain. But he also needed to start flexing his mind as soon as possible. So, should he rest his brain or exercise it after the stroke? Both, I figured.

  It’s like a knee replacement patient being encouraged to climb out of bed and churn his leg around the day after surgery. Cycling the post-op knee hurts and is fatiguing, as is pushing an inflamed brain. Even a healthy brain is constantly balancing between arousal and rest. If life is too stimulating, it seeks relaxation, if it’s too boring it craves stimuli (skating on a blade-edge between too much excitement and too little). A perfect balance is possible to imagine, but impossible to reach, so one is always trembling along an arc from too excited to too bored and back again. Everything we love most—be it sweetheart or flower—looks majestic because it seems to be trembling out of balance.

  While Paul napped, I wandered through the Rehab Unit, which lay on the second floor in the east wing of the hospital. Beyond a head nurse’s office and supply room, an open bay gave nurses and doctors a good overview of the floor and a convenient depot to write orders, gather medications, eye monitors, and await the urgent pinging of bells. All of the patients’ rooms were arranged side by side across a narrow corridor. Walking past open doors, I glimpsed snapshots of humanity in extremis, a surprising range of young and old men and women from many walks of life, all assigned to Rehab’s ill-fated club. During Paul’s physical therapy or in the halls, I sometimes fraternized with fellow residents and their families, learning a little of their stories.

  In one room with the door propped open, the sun cast dark shadows against the pale walls, and for a moment a crowd seemed to be excavating something. As the light shifted, I recognized two nurses helping an obese woman back into bed, struggling to lift her huge swollen leg, where at least 100 pounds of fluid pooled. Her lymph system had gone awry, creating floods and blockages, until it took a draft of people to move her. She once told me she was married but her husband rarely visited, and that she preferred life in the unit, where the nurses looked after her, even filing her nails and washing her hair.

  Down the hall, a young woman, who had suffered a stroke, dragged her left leg and arm, holding the wall while shuffling with the aid of a physical therapist, who was helping her relearn how to walk. She looked up at me with sunken eyes, chin slanted to one side, her face engraved with sorrow. She spoke rarely, in a thin voice that lisped at a whisper. She reminded me of my next-door neighbor many years ago, a healthy realtor in her thirties, who had suffered a stroke that changed her life forever. Her husband had had a swimming pool installed for her to do therapy in, thus beginning the fashion of pools in the neighborhood. An old backyard pool came with my own small house, and Paul adored swimming, but I never dreamed he would be using it for physical therapy one day as well.

  Another resident of Rehab was a young African-American man with shoulder-length dreadlocks. Because of chronic infection exacerbated by his diabetes, one leg had been amputated below the knee. In a flat voice, he told me how nurses cleaned the sutures (staples) with soap and water, then applied the acrid, red-ochre antiseptic, Betadine, which smelled like his mother’s nail-polish remover, and pulled a bandage tightly around the stump, to shrink and mold it for an eventual prosthesis. Most of the time he sat listlessly in a chair, and I heard nurses chiding him for neglecting an ulcer on his remaining foot. I never saw anyone visit him, not family or friends.

  Two doors down lived a slender middle-aged woman, who had had a stroke resulting in a devastatingly enfeebled left arm and leg, but her mind seemed untouched, and while I pitied her fate, I admired her resolve. For although her lax limbs made it arduous, she was learning to use a walker without falling, and I sometimes saw her in physical therapy, patiently aided by a therapist, lifting the aluminum frame and inching it forward, step-sliding into the cage with both feet, then inching forward again, all with a deliberate, unhurried slowness, her height rising and falling at each effort. A professor at one of the local colleges, she was often visited by young women, not a family in the traditional sense but a loyal network of friends and students. She told me she spritzed her pillow several times a day with clary sage, to help her relax and keep up her spirits. Passing her room, I’d catch the piquant scent of desert creosote bushes wafting gently through her open door.

  A college hockey player occupied another room. His bandaged face fixed in a slight curl, he always looked sickened by a bad smell. His was a particularly sad case, but a terribly common story. One night, after he and some frat mates had been drinking, he had crashed his car on the long, unevenly lit highway edging town. His head stove into the windshield, and soon afterward he arrived at the hospital with multiple injuries and disabilities, including loss of high-level brain function. All the so-called executive functions were permanently impaired, and executives are a busy tribe—overseeing the workers and machinery, setting goals, brokering deals, assigning duties, doling out resources, liaising with others. Never again would he find it easy to learn or remember. His attentive parents arrived every day, and he seemed elated to see them, but the tragedy on their faces spiraled right into me. Is this the desert of hope I have in store for me? Paul no longer able to learn and grow? What if he can’t even remember what I say from day to day, or what he’s already said? What a wasteland that would be. Silently saying the word wasteland, my memory bounced into action and tagged T. S. Eliot’s The Waste Land, a poem of disillusionment which I first read in college when I was this boy’s age. He probably did, too. But what would he remember of anything he’d learned? Or hoped to learn? Which is crueler, an old man’s lost memories of a life lived, or a young man’s lost memories of the life he meant to live?

  Another of Paul�
��s companions was a slim woman in her sixties, newly retired, admitted for routine surgery, after which a large clot broke loose, sparking a massive stroke. She was the unlikely statistic, the 1 in about 10,000 who had suffered stroke as a complication of a simple procedure. Unable to walk, she was confined to a wheelchair, body atrophying but mind and speech intact. She told me she had been planning a tour to the national parks with her husband, whom I saw visiting her every day, always wearing a checked long-sleeved shirt and looking perpetually adrift. I imagined the psychic whiplash they felt from this sudden change in life’s trajectory. She’d gone from self-reliance to hospital idleness; and he found himself looking after a completely dependent wife. Was this what awaited me?

  The last complement to the ward was a deeply tanned man in his mid-seventies, who had been admitted to the hospital with a kidney stone obstructing the right ureter and a somewhat routine urinary tract infection, but suffered a stroke with aphasia while at the hospital. A pacemaker aided his irregular heart. His wife, a woman in her mid-fifties with a pile of black hair, usually arrived wearing T-shirt dresses, leggings, and tennis shoes, stayed with him all day, and sometimes slept in an armchair at his bedside. Paul was this last among a propinquity of souls, and I the wife who always looked so distraught and exhausted.

  WHEN I ARRIVED one morning, Paul sat scowling and grumbled grouchily: “Mem, mem, mem!!” He held up five fingers twice, as if he were pushing a palm-sized button, and gestured toward the nurses’ station.

  “Lots of nurses have been in . . . and they’re not being nice to you?”

  He nodded curtly with a stormy black look.

  Swinging into gear, I started going down a mental checklist of things they could have forgotten:

  “Are they forgetting your medication?”

  No response.

  He dropped back into his bed, his eyes full of contempt.

  “Are they forgetting your meals?”

  No response. I rested my hand on his arm only to have him brush it away.

  “Are they not helping you to the bathroom?” I tried, bending to keep eye contact as he turned away from me yet again, revealing the back of his head—unwashed, matted fleece. Your hair is like a flock of goats, I thought.

  Finally, it dawned on me to ask: “Are they treating you like you’re a child?”

  He knotted his face angrily and blurted out a long smudge of syllables “Rhey wickyderm stumpf yagtarggritty andortmfgvpfl!!!!!” and I sensed he was saying something like, I’m a grown man—I know how to do this stuff! And they’re treating me like I don’t know how to stand up!

  He pointed to the whiteboard which showed his schedule for the day—a busy one full of speech and physical therapy—and made one of those universal gestures that means, Screw them all! I’m not going to do it, forget about it, it’s out of the question, no one is going to tell me what to do! That much I got. His anger burned like lava, and filled the room with a dark presence that made me feel physically smaller. Still, I half convinced myself it was good that he was trying to talk at all, so I didn’t discourage him. But interpreting was grueling, and he grew madder and madder at me for not understanding, until the room finally became too hot and I started to hyperventilate.

  “I’ve got to go,” I sighed, exhausted.

  Perfectly legible, his face yelled: Why?!

  Several days later, as his besieged brain began to quiet down, Paul said his first intelligible words, uttered in frustration while yet again struggling to make himself understood. He wanted me to do something, something urgently important, something involving small square things (which he outlined in space), something located at home.

  “Stir the nevis! Stir the nevis! Mem, mem, mem!” he kept insisting. “You gad clottal to stir the nevis!!!” He chopped the air with both hands, as if he were a martial artist breaking wooden boards.

  The only nevis I knew of was an island in the West Indies.

  “It’s related to an island, to the West Indies? It’s shaped like the island?” Thumbs touching, then fingertips, I made an outline of the lush, round, rain-forested island.

  Words seemed to be tweaking the edges of his mind. “No!” he finally roared in frustration. “It’s simple!!!” He fell back in disappointment, his face askew from the effort of producing that small collection of sounds.

  He’s speaking! I realized in shock. Thank heavens! He just made sense! But what on earth does he mean? Collecting my wits about me, I said as calmly as I could: “I’m sorry, but I don’t know what you’re saying. I am trying to understand. I know this is hard but it’s not easy for me either. Can we please take a rest and try again later?”

  An hour later, he insisted once more that I do something with or about or on the island of Nevis. Unless the word was nevus, but why would Paul be struggling so hard to communicate something about a mole? As an Interplast volunteer, I’d watched doctors remove a large hairy nevus from the cheek of a boy in Honduras, in an old operating room with an opaque wall of glass bricks. When electricity failed one evening, a doctor had parked his car beside the wall and turned on the headlamps, so that surgeons could finish their operations.

  “You don’t mean a nevus, like a mole?”

  “No!” he moaned.

  It took several days, and Paul flicking the light switch on and off repeatedly, while pointing at me with his free hand, to figure out that what he wanted me to do was pay the electric bill.

  A few other words returned to Paul helter-skelter, including one usually slurred as a plea and often as a demand: “Home!” For Paul, true home (like true north) existed as his childhood village, where almost everything was taller than he was, and where he could be shielded by his mother Mildred’s benevolent arms. Home was where he directed miniature armies, and where he hid from terrifying dangers he couldn’t picture or name. I understood his fervor. For me, home was a small suburb of Chicago, in a house with carpeted stairs I bumped down on my bum; pet turtles; and a dancing-partner doll, with yellow pigtails and elastic feet, who stood as tall as I did and clung as we waltzed around the kitchen.

  “I’m very sorry, honey, but you just can’t go home yet. You’ve had a bad stroke,” I slowly reminded him yet again, allowing time for him to absorb each word. “Do you think you’re going to recover and get your speech back on your own?”

  He seemed to understand—or he just knew that I was asking a yes/no question—and he nodded a vehement yes.

  “I’m so sorry, but it’s not going to happen like that. You’ll improve, I know you will, but even at home you will need help. And a speech therapist.”

  Was it true? Did he understand anything I was saying? Could he talk to himself about it—did he still have an inner dialogue? I wasn’t sure.

  The brain usually toils seamlessly, above and below the pond scum of awareness, integrating millions of messages, calculations, appraisals, and updates. To its named owner, it speaks in streams of consciousness, image and back talk, a conversation that runs from birth to death, a voice that wells within us, as if a tailor-made talk show host took the stage each day and spoke only to us. That inner voice feels like an I, but also like an other, an observer. When they think no one is listening, people often narrate their doings in the third person, usually in the idiom of a sportscaster or TV interviewer. While The Tonight Show Starring Johnny Carson reigned, many people admitted to secretly fantasizing about being a guest on the show, silently staging the questions Johnny would ask them and their clever replies.

  And if the brain is scrambled like Paul’s, its bridges burned, its wires crossed, leaving decimated hillocks and gullies? How does a self reassemble itself from the rubble? Does it have to reconstitute its “inner voice”? How does it do that? By digging through the scorched earth for remembered voices? Maybe so, maybe in time they merge.

  With both Broca’s and Wernicke’s aphasia, he had little chanc
e of following everything people said to him. People with Wernicke’s aphasia typically speak in long rambling sentences, or find their normal sentences invaded by lots of extra words, or mint neologisms, or utter gibberish. An example of this was Paul’s saying “You gad clottal to stir the nevis!!!” when he meant: “You’ve got to pay the electric bill.” They don’t understand simple instructions, yet their language may be grammatical, and fluent—strikingly natural in rhythm and tone—but jammed with jargon and gibberish.

  It made sense that Paul had abbreviated what he was feeling to “go home.” People with Broca’s aphasia tend to speak telegraphically in short halting phrases that may make sense but are staged with enormous effort because neurons in the Broca’s region of the brain are important in coordinating the muscles that move the lips, palate, tongue, and vocal cords. And Broca’s aphasia often leads to the frustration of knowing what you want to say without being able to say it. In Wernicke’s, the words tumble out in fits and starts, and sufferers often omit the small linking words “as,” “and,” or “the”; they may also omit parts of verbs. So when Paul said, “Go home,” he meant: “I want to go home.” He might also have meant: “I want you to go home,” or, depending on the context, “I’m losing my home.” If he were only suffering from Broca’s aphasia, he’d understand some of what people were saying to him—enough to know he had a speech problem and to feel horribly frustrated by it. In a way, Wernicke’s is more insidious; you don’t know you’re speaking gibberish.

  People like Paul, doubly stricken with global aphasia, have extensive damage to their language areas, and lose most of their ability to speak and understand language. So this meant that when I, the nurses, or the doctors talked, Paul had two problems: he couldn’t necessarily comprehend what we were saying, and he was unable to find words to respond. For people with such severe aphasia, everything verbal may suddenly vanish from their lives, leaving them only with gestures and facial expressions when they try to communicate. Paralysis of the right face and arm usually accompanies Broca’s aphasia (because the frontal lobe is also important for movement). So Paul’s numb hand, drooping face, and swollen arm were to be expected. And since the left hemisphere stores memories of how to perform skilled acts, I shouldn’t be surprised that he couldn’t remember how to comb his hair. Despite the brain’s plasticity, global aphasia isn’t something that disappears; Paul’s brain was extensively scarred. Making any improvement, even the smallest, would take him a devilish amount of work.