One Hundred Names for Love: A Memoir

  He thought for a long while, and was about to speak when, on a hunch, I said gently: “Try not to guess. Do you know for sure?”

  “Fifty.”

  “No, four hundred is much more than fifty.”

  “Fifty is m-more than than four hundred,” he stridently insisted.

  Paul used to be an ace at math, and had naturally assumed most of the numerical chores in the household, from calculating taxes to reading the water meter. We used to joke about my getting a 100 percent on my Airman’s Written Exam—which included many navigation and loading problems that had to be solved using a circular slide rule, not a calculator or computer—even though math didn’t come easily to me. I was by no means fluent in arithmetic, algebra, or geometry. I could do my multiplication tables, but not at speed or under pressure. So, keeping airspeed steady while flying the required “teardrop-shaped” holding pattern in gusty winds, while also re-computing my heading, was a living nightmare, and in practice at least, I usually got it wrong, drawing amoebas, not teardrops, across the sky.

  Paul, on the other hand, had enjoyed math, which neither captivated nor intimidated him. Once, during an unusually boring seminar, he had even translated what he was being paid per hour into cans of Campbell’s soup! Was a lifetime’s practice with numbers, ratios, measurements, degrees—all of it erased? And to what extent was his right hemisphere singed by the stroke? A network in the left hemisphere identifies the words we assign to numbers, but then the right hemisphere helps picture the magnitudes that are involved, and those also seemed now to elude Paul.

  He edged closer to me, close enough that our arms could touch, and I heard him whisper: “Two dollars.”

  “Two dollars?”

  Crooking a finger backwards, he pointed to Liz.

  “We owe Liz two dollars for something?”

  He cast me a slanting glance, and uttered a What do you use for a memory? sigh of exasperation.

  “Cuisine,” he whispered emphatically, as if wondering how I planned to help him recover when I couldn’t even remember something that had happened an hour before.

  “For picking up the Indian food?”

  “Yes!”

  “That cost twenty dollars, not two, twenty. Two plus a zero.”

  Grimacing, he shook his head. “No—two dollars.”

  No, for the time being at least, he couldn’t safely do his own blood sugar readings and insulin. Numbers might be shaped differently than words, but they no longer functioned as meaningful symbols.

  On top of that, instructions of more than a couple of steps confused him. His procedural memory—the “how-to,” long-term memory of skills—was too damaged during the stroke. We couldn’t trust him to reason that IF his blood sugar was over 150, THEN administer insulin; IF less than 150, DON’T. Nor trust him to understand which pills to take when. I hated watching him feel so helpless. But we prefilled the syringes in groups of ten and stored them in the fridge.

  We developed a standard breakfast routine which began with sugar-free, cold “hot cocoa” (a childhood favorite) thickened with Thick-It, a tonic surprisingly difficult to prepare. Thick-It clumps in hot water, and cocoa powder clumps in cold water, so we tried a variety of whisks, blenders, right- versus left-handed stirring, shaking while doing the Morris (English folk dance performed by men wearing bells around their knees), the shimmy, flamenco, strange versions of the rumba. After much trial and error, and laughter, we learned to mix the chocolate powder in hot water, stir out the lumps, then add prethickened milk. Still, getting him to eat much wasn’t easy.

  For good reason, Kelly and the other speech therapists had alarmed Paul about the danger of food or liquid straying into his lungs and causing pneumonia. The hazard frightened Paul so dreadfully that now I couldn’t get him to eat much food, or even drink much, a more dangerous refusal. Altogether, he’d lost forty-five pounds, and since he started out very much overweight, he looked healthier and his blood pressure was lower. But we were getting to the point where he needed to maintain his weight. Constantly dry-mouthed because he couldn’t drink regular liquids without choking, he craved milk, and often tried to snatch it from the fridge. He needed to have it explained over and over (because he forgot immediately) why he wasn’t allowed to drink cold quenching milk, the satiny liquid with sheets-on-a-line freshness, a hint of vanilla, and a smart finish. He’d once told me that he loved the way it coated the mouth and lingered after swallowing. He loved that it came from female breasts. He couldn’t get enough of it, but had made do with a half gallon or so a day. Now, with the required dose of Thick-It, he refused to drink it at all.

  After he had some blood work done, Dr. Ann phoned me.

  “He’s still dehydrated,” she said with concern.

  “Look, he’s just not eating or drinking,” I lamented. “I’ve tried everything.” Somehow it felt like my fault.

  “Do you think it would be helpful if I spoke with him?” she offered. “I could drop by on my way home.”

  A family doctor making a house call is now an antique custom, and I appreciated her kindness.

  “Yes,” I sighed with relief. “Could you possibly?”

  And so she did later that day, sitting on the couch with Paul as Liz and I hovered. Paul cast us the look of someone being cornered by gentle gorgons.

  “I don’t want you to worry if there’s a conspiracy going on,” she assured Paul with touching directness. “I’m just going to tell you, there is a conspiracy going on. We’re conspiring to get you to eat and drink so that you don’t have to go back to the hospital! You need to eat. That’s really important, you need the nourishment and fluids now more than ever. I know you’re scared about maybe aspirating food, but not eating isn’t the answer. Just sit upright or lean forward, and take your time swallowing.”

  Paul had trusted Dr. Ann with his life many times in the past. I thought, as I watched the scene, how dear and tribal it seemed: a sick boy fussed over by three caring women.

  The next day, try as I might, I couldn’t hide my sadness and fatigue. I felt as if I were becoming Paul’s coach, cheerleader, teammate, teacher, translator, best friend and wife all rolled into one. No one can play so many roles without burning out.

  “What’s wrong?” Paul asked

  I tried not to say, but confessed anyway: “I’m overwhelmed.”

  And a little later, to my surprise, he offered: “Do you . . . mem, mem, mem . . . ebb outhouse—no! silly, not outhouse . . . outside . . . house. out for dinner?”

  “Yes, I miss our dinners out together,” I sighed, touched that Paul was trying to cheer me up. I did miss them, and was overjoyed he felt brave enough to go out, but it was also a ploy to get him to eat again. Off we went to a local Japanese restaurant, with Paul haphazardly shaven, in a pair of plaid flannel boxers and a short-sleeved blue shirt. Never a dapper dresser, in our early days together he had worn slacks and a shirt, belt, thin socks, lace-up oxfords. During one notable year in the 1980s when he was a visiting professor at Colgate, he’d risen to the sartorial splendor of a blue velour sports jacket, wheat-brown corduroy slacks, white shirt with lightly starched collar, and a colorful tie. He’d often lamented how blandly men were obliged to dress, while women could express themselves through sumptuous colors and textures.

  But gradually, he began wearing less and less, as if sloughing off dead skin. Now only a short-sleeved cornflower-blue shirt would do (fortunately he had two). Loafers. No socks. White walking shorts gave way to long boxy swim shorts that almost passed for regular shorts. Since the stroke, the swim shorts yielded to plaid flannel boxer shorts in differently hued tartans. With or without button fly. Sometimes—if the buttonholes sagged open—he wore the shorts backwards. He insisted on dressing as comfortably as possible. Nor could I gently persuade him to dress otherwise, and I refused to wage war over something so trivial. Pick your fight was a ma
rriage rule I’d long lived by. So, like a shrine to past attire, his closet held jackets, slacks, long-sleeved shirts, and dozens of ties and ascots he never wore. Including, in 2010, a favorite he picked out himself: a jazzy tie sporting, of all things, the H1N1 flu molecule.

  At the restaurant, I steered him around chairs and tables, into a secluded booth where he might sprawl a little. The menu offered glossy photographs of perfect entrees, and he studied them intently, as if they were mail-order brides.

  “Anything appeal to you?”

  When he looked up nervously, I realized he didn’t know what to do. Would he make a scene? Run out? Frustrate and embarrass himself when the waitperson arrived? I wasn’t sure. Taking his hand reassuringly, I said: “Would you like me to order for you today?”

  His forehead furrowed as he struggled to disentangle my sounds from all the others, including a television set high on the wall and a sizzling hibachi grill surrounded by celebrating students. I’d learned the value of repeating anything of importance.

  “Would you like me to order for you today?”

  Try as he might, he couldn’t seem to isolate my voice amid all the warring sounds. Leaning across the table, I mouthed the words slowly and loudly. With a grateful sigh, he laid down the menu.

  I ordered dishes he had relished before the stroke: shumai, little clouds of shrimp-filled dough, and skewers of bite-size shrimp and vegetables. And we dined mainly in silence, with exaggerated wide-eyes and smiles for It tastes good! He was happy to restore a little normalcy to our life, and I was relieved to see him eating more solid food.

  On the drive home, to my delight, he politely stammered, “Thanks . . . for the Japanese . . . bouquet,” trying to say “banquet.”

  Although Paul did return to regular eating, he now insisted on exactly the same foods every day, without even minor changes for whim, holiday, health, or perverse fun. I provided what I knew he wouldn’t be able to resist. The dinner menu, a health addict’s nightmare, a British eccentric’s dream: white potatoes out of a can, mashed, topped with bottled gravy, and either canned chicken or ham. Breakfast: Egg Beaters, stove-fried toast in olive oil, and soy-based Smart Bacon. During the evening, he ate vast quantities of sugar-free vanilla ice cream right from the half-gallon container. This wasn’t the low-salt, diabetic diet he was supposed to follow, but I was just happy he was eating. With all the ice cream, he started putting on weight fast, so in the interests of portion control, he scientifically taste-tested his way through a dozen sugar-free ice cream sandwiches and bars, most of which he dismissed (as flavorless) with a sour face. At last he settled on “Klondike Slim Bears,” individually wrapped squares of “No Added Sugar” vanilla ice cream in a milk-chocolate-flavored coating. But the name “Slim Bear” wouldn’t stick in his head, and he kept substituting words for it.

  “Skinny elephant,” he said, hungry for dessert.

  I chuckled at the image. “A skinny elephant?”

  “No,” he crooned, both annoyed with himself and amused by the picture he had created. Wiping the words away with one hand as if they’d been sky-written, he said: “Not skinny elephant.”

  He drew a square in the air with both hands.

  “A . . . a . . . a . . . skinny elephant! NO . . . skinny elephant . . .”

  The next day, in complete seriousness, sure he’d get it right this time, he requested: “Minor Bear.” His request was matter-of-fact. In his mind he was saying the right words, not asking for a winter constellation.

  “A minor bear isn’t what it’s called,” I explained with an amused smile. “But a minor bear is Ursa Minor, the Little Dipper.”

  He pondered this and smiled. “Ursa,” he echoed, and nodded in understanding.

  Yet another oddity about aphasia is that it’s possible to lose access to words in a native language, but still retain those in any foreign languages you may have learned. Paul had studied Latin and French more than half a century before, and he’d had a keen interest in astronomy. Ursa is Latin for bear, and the Little Dipper is known to astronomers as Ursa Minor, the Big Dipper as Ursa Major.

  “Slim Bear . . .” I said with that special inflexion that means Repeat after me.

  “Bear,” he repeated. “Bear.”

  “Slim . . . Bear.”

  “Slim . . . Bear.”

  But his brain simply refused to store the brand name, only the paradox of something big being described as small. So he continued to refer to his nightly treat as everything from “Enormous Mouse” to “Midget Elephant.” As soon as he said it, he’d laugh, realizing it wasn’t what he meant, then ask for the right words, which I’d provide. But they had no sticking power. I might have tried “Klondike” instead, but after a while we gave up and enjoyed the nonsense words the slot machine of his brain kept tossing out.

  Sometimes he’d just pantomime, drawing a square in the air with both hands. But he used the same pantomime for almost everything he couldn’t find the words for, regardless of shape—postage stamps, FedEx envelopes, misplaced manuscripts—so that didn’t help much, even though, in this case, it was accurate. In time, I began thinking of the square as a templum (the origins of our word temple). In ancient times, a soothsayer would hold aloft a square of four sticks (the templum) and foretell events based on what he saw fly across or into that space, be it sparrow, bat, star, sun, or dragon-headed cloud. It was more of a sacred corral than anything concrete, an aerial shrine or sanctuary, not an edifice. He didn’t have to use four sticks for divination. An augur could also outline a space with his staff, and wherever he drew that square it framed the future. Whatever Paul yearned for—a Skinny Bear or a chunk of cheese—seemed to exist in a similar kind of consecrated space in his mind, a perfect square of desire.

  I felt relieved that Paul was eating, but drinking still posed diabolical problems. Over time, Paul progressed to honey-thick liquids, but still found them unnaturally viscous, like motor oil. Pitchers of thickened sugar-free lemonade were his main thirstquencher, along with the Thick-It steeled cocoa and milk. A couple of times a week, we’d mix a fresh batch, tossing the stale leftovers down the sink. Little did we guess how much trouble that would stir up.

  One day the drain backed up and I summoned the plumber for what I assumed was a routine call. Sitting on the kitchen floor, he fed yard after yard of his coiled metal plumber’s “snake” down the open maw of the drain, and marveled at the seemingly endless amount of sticky black sludge he cajoled out, over and over, until the steadfast snake finally reached the street 100 feet away. As the buckets filled, it looked like a scene from an oil rig or a whaling ship, with stinking wads of tarry black. The plumber just kept shaking his head and muttering how strange this was. Never seen it before . . . It was only after he left that the laughter began as we realized that we’d created a huge gunky bog by subjecting the drain to gobs of discarded “Thick-It,” which had gelatinized everything it touched. After the plumber left, we hovered over the sink to watch the miracle of the waters once again flowing down the drain.

  “I think he’s cooked it!” Paul crowed triumphantly, meaning, of course: “The plumber has fixed the drain.”

  The ability to obsess well is an artist’s stock in trade, and apparently it doesn’t vanish with speech. Paul’s cravings might have changed, but not his craving for cravings. Gone were the fish pastes, salmon, and trifle that reminded him of his British childhood. Post-stroke, he developed an obsessive craving for chocolate, which, since he was diabetic, had to be sugar-free. Taste-testing once again, he settled on an obscure brand of sugar-free dark chocolate bars, which weren’t easy to find locally. When the supply ran low, I would frantically order them from New York City or Rochester, buying in bulk. Sometimes Liz or I had to travel overland to buy them in Syracuse or Corning, where to the mystification of shopkeepers we’d swoop in like bank robbers and demand all their supply, including any in the storeroom. We
might leave with fifty. Paul ate one or two a night, considering them medically necessary, since they contained maltitol, with a printed warning on the chocolate bar label that it could cause loose stools if ingested in excess. Chocolate bars became the luxurious laxative backbone of his bowel regimen for a significant period of time. The swanky chocolate store in one mall came to recognize me as the habitué who bought the bars by the case. I hadn’t the heart to reveal they were being used as a laxative. Then Liz started appearing at the same store instead, with the same ostensible hunger, one only a mother lode of this particular chocolate seemed to satisfy.

  Long before, Liz’s landlord Gustaf had recommended the easy-to-prepare dinner Tasty Bite, a prepackaged Indian curry meal he’d been packing as emergency rations while vagabonding in Mongolia and all over the world. She and her husband tasted it, and liked it well enough to start buying it in bulk for camping trips. One day Liz arrived with two Tasty Bite offerings, Madras Lentils and Bombay Potatoes, for us to try. They could be eaten cold, but tasted delicious warmed up, and I liked them, but Paul was completely hooked. It filled some craving powerful as chocolate or coffee. Maybe it conjured up his British childhood’s colonial past, or reminded him of the beef curry served nearly every day in his college at Oxford. Whatever the lure, from then on he ate nothing else for dinner. He would empty two pouches of Tasty Bite into a bowl, add plain yogurt to tone down the hot peppers, stir thoroughly, and microwave for three minutes (by pressing a red dot three times). This became his favorite dinner every night for five years, with the occasional exceptions of Chinese takeout or a bowl of cold peeled shrimp. Fortunately it’s a healthy vegetarian meal, because he’s eaten it now over 1,500 days in a row. Keeping a three-month supply on hand, our pantry is an homage to curried beans, and we’re well prepared for blizzards or hurricanes. In addition to its taste, Paul loved that it was manufactured in India, sealed in pouches designed for the Apollo space program, and tested to withstand extreme temperatures and heights—from below sea level to the moon. Tasty Bite had traveled up Mount Everest with the Indian Armed Forces and to Antarctica with Conrad Anker. Surely it would do for an aphasic-British-eccentric-ex-cricket-bowler-retired-professor-author?