The Boy Who Loved Too Much Page 6

  While Gayle sat at the dining table, leafing through the files, Eli, now twelve, perched at the edge of a blue recliner across the open living and dining room, facing a collapsible TV tray that held Gayle’s laptop. He stabbed at the keys. He was a proficient typist, and could spell most words phonetically, letting autocorrect do the rest. This came in handy when he searched the internet for floor-scrubbing videos, as he did compulsively. At the moment he was on YouTube, looking for videos of his school’s custodian, whom he called Mr. Dave. He either didn’t realize that someone would have had to record a video for it to appear online, or he was sure that someone had seen fit to memorialize Mr. Dave as he scrubbed the school floor. Eli, for one, idolized him for his Tennant 5400 automatic scrubber: the top of the line, according to Eli.

  Eli’s obsession with floor scrubbers—and with his other favorite YouTube subject, vacuum cleaners—had evolved from an aversion earlier in his life. Because of his acute sense of hearing, the sound of vacuums in particular had made him plug his ears and cry as a toddler. Over time, his sensitivity lessened and he became intensely drawn to what he’d once feared. Now he craved the drone of the vacuum and the whir of the floor scrubber.

  This craving for certain sounds is common in Williams, and goes hand in hand with a tendency to be highly musical. Like Eli, many people with Williams sing constantly, and they tend to be good at it. The late neurologist and author Oliver Sacks, in his book Musicophilia: Tales of Music and the Brain, called people with Williams “a hypermusical species.” A number of them have been labeled musical savants, with innate gifts that include perfect pitch and an ability to play instruments by ear. One woman with Williams, now in her sixties, is an opera singer who has memorized more than two thousand pieces in twenty-eight languages. She also taught herself to play the accordion.

  And while researchers haven’t conclusively determined whether musical talent is more common in Williams (one study reported that three in ten people with Williams had perfect pitch, compared to one in a thousand among the rest of us, while another study found that people with Williams were in fact less likely than the general population to have perfect pitch or rhythm), there is a wealth of evidence that people with Williams have a much stronger emotional response to music than the average person does. Even young children with Williams who can’t talk yet suddenly start crying when they hear a sad song. Older children often beg their parents not to play ballads about heartache, which they find too devastating. On the other hand, upbeat songs will get most people with Williams on their feet and dancing.

  But everyone has their preferences: one girl with Williams, a little younger than Eli, had a visceral reaction to classical music; she’d scream if her mother happened to turn on the classical radio station. At a school assembly, when the band began playing a classical melody, she clapped her hands over her ears and bellowed, “SON OF A BITCH!!!”

  Eli, who once participated in a study on musical ability in Williams conducted by Vanderbilt University researchers, didn’t quite have perfect pitch, but he was a strong singer and a natural drummer, with what the researchers called an “innate musical orientation.”

  Unlike the girl who hated classical music, Eli enjoyed nearly every musical genre—everything from punk rock to opera, especially as performed by Luciano Pavarotti, who was another frequent subject of his YouTube searches. He could listen to the tenor sing the same song over and over, long after Gayle wanted to stuff her ears with cotton. Of course, there were certain high-pitched sounds that Eli couldn’t stand. A crying baby was torture to him. But he couldn’t get enough of floor scrubbers.

  “Mom, how do you spell ‘custodian’?” he called out.

  Gayle spelled the word without lifting her head from the records. She had just come across a fat envelope from her congresswoman, to whom she had written when an old boss hassled her about all the time she was missing for Eli’s doctors’ appointments. The envelope contained a stack of materials on the Family and Medical Leave Act that outlined Gayle’s legal entitlement to care for a special-needs son. She skimmed the documents and scowled, remembering the arguments she’d had with her inflexible supervisor, who seemed to think that carting Eli to specialists every other week was an extravagance Gayle could easily dispense with. At one point he finally conceded, “Look, I don’t know what it’s like to have a kid with special needs. And, honestly, I hope I never do.”

  “I hope you never do, either,” Gayle said. She meant it. She took no comfort in knowing that, after she left the company, the man’s son was diagnosed with special needs of his own.

  Across the room, Eli pecked at the keyboard: “mr dave custodian scrubbing mashene.” He craned his neck, bringing his face inches from the screen as he examined each video that popped up.

  Gayle now worked for a different company, which allowed her to work from home one or two days a week and to rearrange her hours when she had to take Eli to appointments. She was grateful for the flexibility and grateful to have her mother, whom Eli called Mimi, and a constellation of aunts, uncles, and cousins close by. She relied on Mimi to watch Eli while she worked. Often it was Mimi who met Eli at the bus stop, got him a snack, and supervised him for the afternoon while Gayle sat at her desk in a corner of the living room, scrolling through spreadsheets and ignoring the sounds of floor-scrubbing videos and Eli’s endless singing from the other side of the room.

  * * *

  ELI GAVE UP ON HIS search for Mr. Dave the custodian and his scrubbing machine, which had yielded no relevant results. He typed “Tennant 5400” into the search bar instead. He knew this search would be fruitful. He’d done it many times before.

  Soon the familiar teal housing, emblazoned with “5400” in white block numbers, appeared on the screen. It glided across a warehouse floor like a giant mechanized snail, leaving a glistening trail in its wake. Eli shrieked with joy, as if it were a novel sight. The camera panned to the back of the scrubber, to the corrugated black hoses Eli adored so much that he often asked Gayle to draw them. With its twenty-one-gallon cleaning solution tank, four-sided breakaway squeegee, adjustable brush pressure, and the horsepower to clean up to 30,000 square feet an hour, the Tennant 5400 was, to Eli’s mind, the Cadillac of floor scrubbers. Best of all was the gurgling whoosh it made and the crinkly texture of its ridged plastic hoses—like bendy straws through which it slurped soapy water up from the floor.

  “See, Tennant 5400!” Eli shouted to no one in particular. “I can’t wait to use it someday. When I am a janitor.”

  He found an image of the floor scrubber’s console and zoomed in on the dials and knobs. He pressed his index finger to the computer screen, pretending to flip the “on” switch. His finger left an oily print on the screen.

  “Beep!” he said, pushing a button.

  “Beep!” he said again, pretending to turn a dial.

  Gayle looked up from her pile of papers and watched him beeping cheerfully at the screen. When Dr. Pober first told her Eli would most likely do an unskilled, repetitive job as an adult, Gayle couldn’t imagine him working as a checkout clerk, a fast-food cook, or a custodian. She had been sure there was something better in store for him. Now, watching Eli dream of a career as a janitor, she realized she would be thrilled to see him cleaning floors for a living if it made him happy. Her disdain for menial labor had been replaced by a new fear: that even this job might be beyond his abilities. He didn’t really want to clean a floor, she thought. He just wanted to admire the floor scrubber. And he didn’t have the coordination to push it down a hallway in even lanes, or the self-discipline to keep going until every square inch was clean. He’d abandon his post in an instant if he saw someone he wanted to talk to.

  If not janitorial work, though, then what? There were sheltered workshops for people with intellectual disabilities, where he could stuff envelopes or roll napkins around silverware for less than minimum wage. But even if he had the self-control to stay seated and on task, would he find any fulfillment in it?

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p; Gayle reassured herself that he was still a child, that there was time for him to mature and grow. Maybe in a few years he’d have the sustained attention and impulse control he would need to do something more meaningful. She shuffled through psychological evaluations that listed his distractibility and short attention span as “areas of concern” and school reports documenting the meltdowns he still had when he wasn’t allowed to play with a pinwheel or spin the propeller of a toy helicopter. She stuffed these into manila folders and shoved them in a file box, as though putting them away with enough force would lock them securely in the past.

  “Mom, can I have a snack?” Eli bleated from across the room.

  “Do you have your pants on?” she asked, again without looking up from the stack of papers. She heard a heavy sigh.

  “I will get them on.”

  “Oh, thanks so much,” she said, smoothing out one of the creased pages.

  Eli’s tendency to forgo pants at home didn’t really faze Gayle. He found the khakis he typically wore to school constricting, so he usually changed into fleece pants at home. Sometimes he just pulled the school pants off and left it at that. Gayle would have humored him if she hadn’t been afraid he might get so used to going without pants that he’d take them off in the school bathroom one day, forget to put them back on, and stroll the halls in his underwear. So she tried to reinforce the habit. His seminudity was inoffensive now, but a day would come when it would be more unseemly.

  “I can have a little cereal now?” Eli said. “I put my pants on!” Gayle, distracted by an old bill from Eli’s cardiologist, didn’t answer right away.

  “I did it, Mom! I did this for you!” Eli insisted, standing and pointing to his pants proudly. “Mom!”

  “Eli, I’m in the middle of something,” Gayle said, finally looking up.

  “She’s not being nice to me!” he said in an outraged voice, referring to his mother in the third person, as he tended to do when he had harsh words for her. He thrust his head forward, head-butting the air to emphasize his frustration.

  “Oh, you need a pill, don’t you?” she asked rhetorically, looking at the clock. It was time for another Ritalin. He took three doses a day to help curb his distractibility. Gayle gave the pill to Eli with a glass of water. Then she poured him a bowl of Chex and set it at the edge of the dining table, where the milk wouldn’t slosh onto her records.

  Apart from the pile of papers on the table and a galaxy of brightly colored plastic Bristle Blocks that Eli had spread across the floor, their condo was clean and cozy. Eli’s tastes dominated the décor: his vast collection of toys, and the many drawings of Cookie Monster, overshadowed any trace of Gayle’s own personal style. There were no concert posters to remind her of her hard-rock days, although their legacy lingered in small ways. (She’d named her Wi-Fi network Alice Cooper.) Gayle had once scoffed at parents whose lives were entirely subsumed by their kids—but that was before she had a child with special needs.

  When it came to his passions, Eli was strong-willed and demanding. A home without multiple vacuum cleaners seemed to him a barren wasteland. And Gayle didn’t have the heart to deprive him. A row of cast-off vacuums from his relatives, and a Dustbuster that had been a gift from his school bus driver, lined the kitchen wall. Eli’s favorite was Gayle’s actual, working vacuum: an Oreck that he treated like a household pet.

  “Where’s that little Oreck? Oh, there you are!” he would coo, and smile lovingly at the vacuum. He’d push it back and forth on the kitchen’s linoleum floor—turned off, since the sound of it turned on was still too much for him in close range. He furnished the vrooming noise himself.

  He also developed passing fixations that changed focus every few months. Right now he was obsessed with tiki heads, the Polynesian totems popular at luaus, and in particular with flaming tiki heads, whose oversize gaping mouths doubled as fire pits. The position of honor on the living room wall was currently occupied by a cardboard cutout of a tiki that Gayle had made at Eli’s request. On the floor were several plastic milk jugs she had carved into jack-o’-lantern faces. Inside, she had placed slips of red and yellow construction paper cut into the wavy outlines of flames that fanned up from the base—voilà, flaming tiki heads. Eli treasured these, although they would eventually fall out of favor. Only the vacuums and spinners would endure.

  The doorway between the kitchen and living room was hung with paper spirals that swirled languidly when anyone walked through: “my twirlies,” Eli called them. Some Gayle had cut out from paper plates and decorated; others came precut and glitter-covered from a store that sold party supplies. Both varieties were beloved. A few lay mangled on a side table, having been handled until the spirals flattened and the paper tore, but that only meant they were favorites. Eli couldn’t help but touch the things he loved, and he lacked the finesse to be gentle with them. His appreciation was literally heavy-handed; the object of his affection was often destroyed.

  Best loved of all was the floor scrubber Gayle had made him out of an oversize cardboard box to which she had attached spiraling cords and the tubes from her uncle’s old CPAP breathing machine, in imitation of the wires and hoses of the Tennant 5400. On top of the box, to model the buttons and dials, she affixed a kitchen timer and made labels: “start/stop,” “wet/dry/squeegee,” and “speed: high/medium/low.” On the front, she glued a red flashing bike light. Eli entertained himself for hours by pushing the scrubber around the apartment, making a whirring sound as he went, bumping into furniture and occasionally into his mother, whom he sweetly asked to move.

  “I’m scrubbing, Mom!” he would say. She usually obliged him and stepped aside.

  The way Eli lit up when she made something for him was one of the greatest pleasures of her life. His elation pushed the boundaries of the human capacity for happiness. Although he told Gayle he loved her at least a dozen times a day no matter what she did, she couldn’t resist making the extra effort to see him beam with delight.

  Part of her, too, felt that she owed it to him—or that the universe owed it to him—to make his life as joyful as possible. Because what if this was all there was? What if the future didn’t hold the endless floor-cleaning fun he expected? She could barely admit this motive to herself, even while she scoured the towering shelves at Home Depot for wheels to make his cardboard floor scrubber complete. Deep down, though, she felt compelled to make him as happy as possible here and now, just in case this was the best his life was going to get.

  Five

  A Genetic Street Lamp

  In the decades after John Williams published a paper on his elfin-faced patients, researchers paid the syndrome relatively little attention. Two breakthroughs launched it from obscurity into the scientific spotlight.

  The first came in 1985, when Ursula Bellugi, a linguist and neuroscientist at the Salk Institute for Biological Studies, met a girl with Williams syndrome who had been referred by Bellugi’s colleague, Noam Chomsky. Bellugi was floored by the fourteen-year-old’s language skills, despite her dismal spatial abilities and overall IQ of 49. When asked to draw an elephant, the girl scratched a few unrecognizable squiggles on paper. But when asked to describe an elephant, she gave a detailed, eloquent response: “It has long gray ears, fan ears, ears that can blow in the wind. It has a long trunk that can pick up grass, or pick up hay . . . If the elephant gets mad it could stomp. It could charge, like a bull can charge. They have long big tusks. They can damage a car—it could be dangerous.” Bellugi was so fascinated by the disconnect between the girl’s verbal abilities and spatial weaknesses that she spent the next decade building a lab dedicated to studying this cognitive conundrum.

  Bellugi’s startling findings spawned a wave of interest in the little-known disorder. Most provocatively, she concluded that the highs and lows of intellectual ability in Williams were strong evidence in support of a theory of multiple intelligences first proposed by Harvard psychologist Howard Gardner in 1983. Gardner’s theory was a radically unorthodox way of conceiv
ing how the brain was wired: not as a unified intellectual force, with overlying intelligence guiding interconnected cognitive functions, but as a hodgepodge of distinct, segregated abilities. If correct, his theory would have revolutionized the way students were taught and intelligence was measured, since standardized tests had been designed to gauge intelligence with a single number—a meaningless assessment, in Gardner’s view.

  His theory struck Bellugi as the perfect model to explain the dramatic variability of Williams cognition. Rather than exist on a level plain, Gardner believed, and Williams syndrome seemed to demonstrate, that each independent type of intelligence—mathematical, linguistic, spatial, musical, even interpersonal—formed its own separate peak or valley, meaning that aptitude in one area didn’t necessarily correlate with aptitude in another.

  This theory, and the support that Williams syndrome provided, sparked a controversy among intelligence experts, most of whom had long believed in a “general intelligence factor” that meant tests of cognitive strength in almost any area could predict overall intelligence. This school of thought held that researchers could even extrapolate from the general factor to predict someone’s future quality of life—everything from success in school and work to the chances of divorcing or having illegitimate children.

  Bellugi and other researchers believed Williams might provide the evidence that would turn this theory on its head. Despite having roughly the same average IQ as people with Down syndrome, who showed consistent impairment across cognitive areas, many people with Williams performed significantly better on certain tests, such as those that measured concrete vocabulary. When asked to name ten animals, people with Down syndrome tended to choose generic nouns: cat, dog, “horsie,” etc. People with Williams syndrome were apt to offer more specific, exotic names: weasel, salamander, Chihuahua, ibex, yak.