One Hundred Names for Love: A Memoir
“Gustaf bought a new toy! Anti-gravity boots with springs, and apparently they’re super-dangerous. They’re supposed to make you be able to bounce about ten feet up in the air. He’s been putting a harness around his waist, his helmet on, and roping himself to the branch of a tree in the front yard. He’s been practicing jumping, springing up and down. . . . The neighbors seem a bit confused!”
“Gustaf has gone kite-surfing again on Lake Ontario. . . .”
Liz was a natural natterer, for whom any topic was fair game, from paranormal military programs to avant-garde art glass or endangered toads. As a result, I never knew what I’d hear drifting in through the screens, usually scraps of conversation too amusing to ignore. Quite often Liz regaled Paul with tales of her previous jobs, an American miscellany that, she swore, had perfectly prepared her for our household: slaloming through traffic and riding rails under the Capitol as a bike messenger in D.C., where she had also worked for the National Rural Electric Cooperative Association and the National Institute of Standards and Technology. Lodging in a Mormon trailer park in Utah while mapping volcanics and faults for the U.S. Geological Survey. Jack-of-all-trades at the Q-U-P-Q-U-G-I-A-Q café (as I heard her spell it out to Paul), a coffeehouse and hostel in Anchorage, Alaska, named for an Inuit myth about a ten-legged polar bear. Coordinating residents at an Alaskan men’s homeless shelter. Shuffling contracts for a high-rise construction firm in Los Angeles. Making cheese for Maine’s iconic Nezinscott Farm, and careening their organic milk delivery van up and down the stony coast. Or her first job in Ithaca, harvesting organic herbs for the farmers’ market, which she confessed she found “a little dull as herbs don’t move very quickly.” And then, of course, before nursing school, with all its viscera and checklists, a couple of years on a thoroughbred farm, where she did everything from mucking out stalls to aiding veterinarian and farrier, and got used to handling half tons of snort and lather.
Or she aired tales from recent trips: Baja for New Year’s on a hippie bus from San Francisco. Canoe camping in Canada with her girlfriends. Wine-tasting in Oregon with the in-laws. Cézanne at the Philadelphia Museum of Art with her mother. The Pork Pavilion at the Missouri State Fair. The Roosevelt Memorial in D.C. (where a runaway horse was being chased, unsuccessfully, by Capitol policemen on bikes). Epic dragon-boat gaiety—from the Olympic paddling course in Montreal to our own Finger Lakes International Dragon Boat Festival, where a Buddhist monk blessed the boats and painted pupils on the eyes of the figureheads to give them sight.
Paul was by no means suffering from lack of verbal input; it was verbal output that he still found oh-so-difficult.
Whenever Paul didn’t know a word, Liz or I would ask him to let his brain hunt until it found another route around the roadblock. That took a while, and sometimes I could almost feel his mind panting through a labyrinth, hitting blind alleys, backtracking, and heading off in another direction.
“When is the nosebleed on? . . . No, no, not nosebleed . . . running and gunning . . . not gunning . . . ball . . . you know . . . city in England . . . kicking, kicking, yes, ball . . .”
“The Arsenal vs. Manchester United soccer match?” I guessed.
His face melted in relief. “Yesss,” he sighed.
Paul adopted a verbal shorthand for letting us know when he was tired and needed to stop wrangling with words.
“Later!” Uttered with a dismissive wave of his hand, shooing us away. His eyes said: My brain is nodding from all the work. Let me rest.
“How does it feel to live in a sorority?” Liz teased, hoping he’d muster a response.
Paul couldn’t resist the bait. “I luv women,” he replied with an exaggerated leer, then rolled onto his side, dug his face into a welcoming crease of the couch, and plunged into a deep sleep, waking an hour later.
A born word-maven and reader, Liz often chatted around the kitchen, and I gabbled back as Paul woke up slowly over breakfast. He preferred to do one thing at a time, while Liz and I conversed easily while doing chores. Not just true of our household. Women ply the rapids of language more easily; and if we seemed to be talking double-time, we probably were doing that, too. Women can pronounce words faster than men, and utter more sentences in a given amount of time. Maybe because women use both hemispheres to comb through sounds, while men mainly use the left side. With a richer bounty of connections among neurons and a more thickly wired corpus callosum zooming traffic between the two hemispheres, the female brain may be better organized for language. Whatever the reason, females are less prey to stuttering, dyslexia, autism, and other language problems, including aphasia.
Most mornings Paul seemed to thrive on our prattle, vicariously enjoying my verbal high-jinks and keen to follow Liz’s newsy updates about life at home and the inspired antics of her husband Will, and of course the unending adventures of Gustaf.
“Too fast!” Paul chided us. “I’m . . . not awake! Tell me l-later.”
“Welcome to the planet of caffeinated women,” I teased. And then, out of the blue, in his old normal tone of voice, he stopped me cold by muttering:
“Every house is a madhouse at some time or another.”
My pulse jumped. A flutter in time. My old Paul was back with his cynical wit and one of his pet sayings, from a short story of Edith Wharton’s.
“What did you say?” I wondered if I’d heard him right or was merely hallucinating.
Taking a moment to carefully swallow his mouthful of omelet, he repeated: “Every mouse glad mouse bother.”
“Ah . . . yes, my little mouse,” I patted him gently on the shoulder. “We won’t bother you with our jabbering—not yet, anyway!”
So the perfectly rendered quotation was just a phantom of my mind born from wishing so hard. The way I sometimes startled, quite sure I saw my mother, strolling on a sunny street, years after her death. The brain searches for the fond familiars it has lost, their sounds and images and habits of mind that haunted it long enough to leave indelible traces, scant truths it could rely on in an uncertain world.
For me, one of the most disturbing aspects of Paul’s aphasia was his no longer being able to find ways to describe the combinative zest of life. That was beyond odd for Paul, of all people, whose written descriptions of anything had tended to be colorful, many-layered, and jazzy. By mixing language with a free hand, his images throbbed with an acute physicality, full of life’s sexy, chaotic, nostalgic, belligerent, crushing, confusing vitality. Objects could lose their identities in the identity of other objects. Sometimes the images didn’t so much combine things as trail them through a slush of other phenomena, suggesting the behavior deep in our brains, hearts, and cells, so that the language of his books often echoed their subject matter. Like his countryman Dylan Thomas, he could always be counted on to see the shroud maker in the surgeon sewing up after an operation. His images weren’t well behaved, nor always explicit. But they were bold, keen-eyed, wild, and voluptuous, sometimes tenderly so.
Cheese turning a pale green cheek like an albino monkey slipping into a vale of chlorophyll. Apples waiting to crack open like two clasped hands parting.
—Portable People
Or:
With sunset came an almost careless quiet as the saffron over the western range turned vermillion and the antennas, the dishes, on top began to resemble mutants semaphoring for help, silhouettes against an engulfing scarlet.
—A Stroke of Genius
Now he could sometimes describe pictures in short simple phrases, but rarely harness the vivid resemblance of analogies; adjectives were hard to come by in his frayed and burned association areas; all the beakers of categories lay in fragile ruins.
“The sky is beautiful today, isn’t it?” I observed. I knew he exulted in bright delft-blue skies. “What color is it?”
“Blue,” he said.
“What kind of blue today?”
br /> He thought for a long, long while, then repeated all he could come up with: “Blue.”
By late afternoon, the day had dwindled into those hours when stroke and Alzheimer’s patients are sometimes described as sundowning, descending into a state of agitated confusion—usually from being over tired by the demands of the day. The rest of us mortals may just say we’re crashing from a day too full of hubbub and caffeine. For Paul, sundowning brought a real eclipse of language, a return to the long stumbling silences he dreaded.
This time, I couldn’t lead him into simple talk, and he didn’t want to watch television either. We sat in silence as the moon rose like a fleshy white old scar. All day, he’d been trying to communicate without much success (aphasia’s roadblocks can vary dramatically from day to day), and he seemed at last to have surrendered. He raised his fists to his forehead, palms facing inward, and tapped them gently. I gasped. I’d seen that gesture before performed by Koko the gorilla, who had been taught to communicate in sign language. It was the sign for “really stupid.” Had Paul seen the same films of Koko that I had? I wasn’t sure.
“Are you trying to say something?” I asked quietly.
He nodded yes, but gave up the effort of pursuing it.
Using a vocabulary adapted from American Sign Language, Koko could describe her world, express her wants, ask questions, and even share complex feelings. Evidently she experienced what we think of as quintessentially human—abstract thought—and relayed many of her states of mind to her trainers by signing such things as: “This makes me sad,” “I’m ashamed,” “It’s fake,” “I’m mad,” “That hurts,” “I’m sorry,” “I need your help,” “I want to visit,” “love,” “time,” and a host of other expressions. She was also creative. She enjoyed painting one canvas after another and sometimes described the subject matter, even if her bright red “bird” seemed to have an awful lot of wings. Unless, maybe, she was depicting it in flight? Most importantly, she knew that she was using signs to communicate, and she could mine a vocabulary of about a thousand words. Making monkey-baby sounds with Paul had felt intimate and right, but I grew immeasurably sad when I realized that, while sundowning, Paul was operating on a linguistic level below that of Koko the gorilla.
CHAPTER 21
A BIG SURPRISE FOR BOTH PAUL AND ME WAS HOW MUCH we’d grown to like Liz—who sometimes seemed like our instant grown-up daughter and at others like a sibling or college housemate. Liz was fun: bookish, chatty, opinionated, and quirky enough that she fit right in. She threw herself into things—be it geology or dragon boating—with an obsessive gusto that made perfect sense to us, since we were forever fiendishly possessed by things, too. She became our familiar, in many senses of the word, but especially: (1) an intimate friend, and (2) an animal who embodies a supernatural spirit and aids a witch in performing magic.
Stroke patients, particularly those with aphasia, often lose some old friends. It’s hard enough for a spouse to learn to communicate with them at a vastly slower pace, using fewer words in response, without monologuing or feeling too awkward to know what to say. A few friends, even long-standing ones, were not able to cope with the aphasia and deserted Paul. I listened to his sorrow, his anger, his sadness over them. But I knew this was usual, and that he needed to make some new friends with people who knew and liked him as the person he was after the stroke. Some did, including Liz.
In the pool, clad in a cheerful striped bikini, Liz often shared medical stories with Paul, and I occasionally overheard snippets of them drifting on the breeze through my study windows.
“A severe reaction to an antibiotic . . . body covered all over with oozing blisters, and on his palms and the soles of his feet . . .”
Or, on another occasion, “I got to pull out a vacuum-surgical drain today, it’s called a grenade! It really does look like a little grenade. You squeeze it to create the vacuum, hook it up, and it sucks out all the blood and nasty fluid from the surgical area. You just pull out the tubing when it’s full. . . .”
Liz practiced her new medical terminology on Paul, bludgeoning him with word games, partly to amuse herself during the languid hours she spent with him in the pool.
“I have a word for you,” she’d say teasingly or as though she was bearing a gift. “Do you know anhedonia?”
With a few hints he’d sometimes miraculously remember, pulling it out of his word hoard.
“Guess what I’m learning?!” I heard her chime merrily one day as I was passing the living room’s back door. “Extrapyramidal neuroleptic side effects!”
“Have you ever heard of akathisia? Okay. Fine. Do you know ... dystonia, dysphoria, akinesia?” “How about easy ones . . . trichtillomania? pneumothorax? Maybe a little geology? Anhydrite? Ooid? Syncline? Cataclastic? Breccia?”
“Wanna hear about the four major types of prostate surgery?” She prattled on without waiting for an answer: “Well, the least invasive, most comfortable option goes up through the penis like a Foley catheter, but it’s actually a miniature roto-rooter. . . .”
Paul looked forward to their swimming-buddy chatterbox time. They shared a bit of a vile irreverent sense of humor. The more gruesome the story was, the better. And Liz seemed to enjoy making him grimace.
“I like to think,” she told me out of his earshot, “that sometimes some of these poor miserable patients make him feel a little better about his situation . . . to use a word I learned from Paul, a little schadenfreude. I mean, here he is in the sun in his pool, swimming away the afternoon . . . and these poor folks are in the hospital, oozing with drains!”
From my desk window, which commands a view of the backyard, I could hear Liz luring him into talking more by asking about things in our house:
“In the library, there’s a photo of you and Diane standing next to another couple in front of a little airplane. It’s a neat photo. Where were you going?”
I paid attention this time, curious how he’d answer.
Paul looked stumped, and, undeterred, Liz pressed on with a clue designed to prod his memory.
“I think it said something about the Caribbean.”
I watched Paul absently drawing an arabesque on the water with one hand as he tried to haul up the right word.
She started reeling off Caribbean locations: “Dominica? Caymans? Virgin Islands? . . .”
Eventually she got to the Turks and Caicos, where we had flown with our friends Jeanne and Steve in 1982. The flight down, in Steve’s vintage twin-engined Apache, following the Bahamian chain, had been a pastel idyll. But on the return flight we’d been vectored into the center of a fuming thunderhead, where the air glittered an unholy green, and suddenly, in a thick whiteout, without our feeling anything like motion, the dials had spun around. Hurled by up- and downdrafts, the plane was doing a loop-de-loop in the clouds. Fortunately, Steve was an aerobatic pilot, who read the instruments fast and knew how to recover—flying the loop blind—even though a twin Apache carrying four people wasn’t the small single-engine Pitts biplane he normally barnstormed in performances. Equally luckily, the Apache had strong struts connecting the fuselage and wings—otherwise the wings would have ripped off. A fledgling single-engine pilot sitting in the copilot’s seat, I saw the instruments tumbling and guessed what was happening, but I wouldn’t have been able to save us. However, I had absolute faith Steve could. I’ll never forget the look of contained panic on his face as he noticed me holding my hand lightly on the yoke (the two yokes move in synchrony), following his lead.
“This isn’t the time to be learning!” he’d snapped. “Secure everything!”
I quickly stowed anything that might zing around the cabin. There was even a term for the jumble of plane and human paraphernalia that fell out when you shook a plane upside down: gubbins. It was a favorite word of Paul’s. Then, with a strangeness one rarely encounters or lives through, a suitcase began to le
vitate and sail forward through the air like balsawood. In the backseat, Paul and Jeanne looked green, scared, as they grabbed the case. And then right side up at last we leveled out and flew into plain old welcome hard rain.
The postcards Steve later had printed to commemorate the trip were a black-and-white photograph showing Jeanne, Steve, Paul and me posing plane-side before the southbound flight, with the title “Trucking Through the Turks: A Sky Art Event.”
How much of that sifted through Paul’s memory in the pool when he heard the words “Turks and Caicos?”
“Oh yes! With friends and gubbins,” was all he answered.
Listening to the exchange, I thought how frustrating it must have been for him not to be able to share the trip’s details with Liz. That podgy little word, gubbins, held his brain’s key to the whole drama.
Pressing on, Liz continued asking him about curios around the living room, such as where the pounded-brass cauldron came from (the trip to Istanbul with my mom when I was sixteen), why there was an inflatable cheetah standing in front of the fireplace (it came from the Warsaw Zoo), how we acquired the see-through globe of the solar system and constellations (it went with Paul’s large telescope, folded up and parked in a corner), where we’d bought the purple faux-velvet swooning couch (a shop in West Palm Beach), if the books in the bookcase were arranged in any special way (they were, it just wasn’t obvious), and where he’d found the tribe of Hopi kachina dolls that was dancing, spell-casting, and generally mischief-making behind the floral couch (Tucson).
Either he’d remember the errant word, or she’d finally guess, or he’d end the game by saying: “We’ll ask Diane.”
In the pool, he spoke more ably than on dry land. Maybe the weightlessness lulled him, or maybe it was the idleness of the conversation, the lack of pressure. He’d flap his arms around slowly, and he’d sweep the skimmer in endless arcs, while Liz hung on to the side of the pool and kicked her legs, or trod in the deep end, gabbing away or waiting for him to answer. Their record was three skin-wrinkling hours in the water.