The Boy Who Loved Too Much Page 12
Ten
People Like Eli
At twelve, Eli didn’t quite grasp the meaning of Williams syndrome. Because he really only heard the term when he and Gayle attended gatherings sponsored by the Williams Syndrome Association, he associated it with holiday parties and summer picnics, awareness walks and fund-raising raffles and auctions.
So when Gayle tried asking him, “What is Williams syndrome?” Eli cocked his head thoughtfully.
“It’s . . .” he began, then broke into a wide smile. “It’s like a party!”
Gayle wasn’t sure whether to laugh or cry at his answer. He wasn’t entirely wrong. Few people were better at making cocktail party conversation, or quicker to rush onto the dance floor, than people with Williams. But it wasn’t exactly the way she’d describe it.
Still, Gayle suspected that Eli understood more about Williams than he let on, if not quite consciously. She and Eli had recently been in line at Panera Bread when a woman ahead of them ordered a lemonade. Overhearing the woman’s effusive banter with the restaurant staff, Gayle guessed that she had Williams without seeing her face.
“I love you guys!” the woman said when she got her drink, her voice as husky and earnest as Eli’s. When she turned, Gayle could tell from the woman’s features that she did indeed have Williams. And so could Eli.
“She’s like me, Mom!” he said, pointing to the woman, who was in her forties. Gayle was stunned.
“What do you mean, she’s like you?” she asked. Eli couldn’t elaborate. He just shook his head and repeated himself. But by recognizing a kindred soul, he revealed more self-awareness than Gayle had thought him capable of. It meant that on some level he knew he was different from most people. It meant he could identify some of those differences when he saw them mirrored in another person: maybe the distinct facial features, maybe the warm, outgoing personality, or maybe both. To Gayle it meant that he would appreciate what it was like to be among a crowd of people like him, suddenly in the majority.
She knew that the Williams Syndrome Association hosted a yearly music therapy camp in Michigan exclusively for kids with Williams. The “therapy” aspect capitalized on the campers’ love of music to teach lessons about safety and appropriate social behavior. But apart from that, it was like any summer camp, where kids sang songs around a campfire, wove friendship bracelets, and forged deep bonds with their bunkmates. It would be, Gayle thought, a unique opportunity for Eli. For once in his life he would be surrounded by peers who were actually his peers—not kids his age who were vastly more mature, and uninterested in talking about twirlies, or the kids in his special-education class who weren’t quite on his intellectual level, and who behaved inappropriately in ways that weren’t compatible with his own. He had fallen into a lonely gap between the two groups, unable to find his niche. Going to camp, Gayle thought, could open the door to friendship and belonging.
What held her back from signing Eli up was the question of money: she didn’t have much. In fact, she was in the process of filing for bankruptcy. Her credit had been ruined after she moved out of the home she’d shared with Alan, who then defaulted on their mortgage. The house went into foreclosure, and she hadn’t even been able to get a credit card since. Her car loan, luckily, had been approved just weeks before the foreclosure showed up on her financial record.
She was still paying off stacks of Eli’s old medical bills through a payment plan with the Yale New Haven Hospital system. The new medical bills just got added to the tab. They were unglamorous expenses, such as routine visits to the gastroenterologist and occasional colonoscopies. Eli’s low intestinal motility, a symptom of Williams, led to chronic constipation punctuated by accidents at the worst times: in school, where the nurse kept a stock of spare pants on hand for the inevitable calamity; at soccer practice for his special-needs sports league; and once at a pool party where a messy, mortifying moment was skirted by mere seconds when Gayle whisked Eli into a bathroom. Now these mishaps were kept at bay with Miralax and a drug called Amitiza. But the drugs were expensive.
Everything was expensive. The co-pays for Eli’s anxiety and attention-deficit/hyperactivity disorder medications were a monthly burden, which, along with the specialist co-pays for the gastroenterologist, the geneticist, the cardiologist, and the psychiatrist, could mean hundreds of dollars in medical costs on a good month. And there were always unexpected extras, new devices or procedures that required hours on the phone, haggling with the insurance company. The latest on a long list was the bath chair Eli’s occupational therapist had recommended so he could learn to shower by himself.
Gayle still helped bathe him. In their small, shared bathroom, she kneeled outside the tub and washed the spots he missed. He didn’t have the coordination to soap himself very well. Using a washcloth, he’d scrub some skin until it was red and raw but overlook other patches entirely. And he really didn’t like soap. It was a sensitivity that plagued people with Williams, many of whom couldn’t tolerate certain textures and tactile sensations—another issue they had in common with people with autism. When Eli was younger, he found the feel of soapy lather so repulsive, he’d sometimes throw up in the shower. Now he could put up with it, although without Gayle’s supervision he’d forgo the soap and just rinse with water. The water itself would be either scalding or freezing, since his poor motor skills made it hard for him to adjust the shower knob. He turned it in quick jerks to the left or right, overcompensating in each direction. And with his limited depth perception, he struggled to step in and out of the tub.
Eli’s therapist suggested that a bath chair might make the process easier by taking the stepping and standing out of the equation. Gayle was willing to give it a shot. She didn’t want Eli to depend on her to clean him forever.
So she set out to buy the chair. She had Eli’s doctor write a prescription for it, so the insurance company would have proof that it was medically necessary. Then she waited in line at a medical equipment store after work one evening, clutching the prescription. The chair was a no-frills gray plastic-and-metal contraption with a sticker price of $160. Gayle wondered what the co-pay would be. The line at the store, predominantly elderly customers, was long and slow-moving, so she had plenty of time to wonder. Finally she reached the front, only to be told by a testy sales clerk that insurance never covered bath items. The woman refused to even look at her prescription. She seemed annoyed at Gayle for wasting her time.
Gayle’s hackles rose. Like I have nothing better to do, she fumed inwardly. Like I’m so happy to be here buying a chair for my twelve-year-old son who can’t take a bath by himself. She stormed out of the store and drove straight to another one across town, where a friendlier clerk accepted her prescription and entered it into the computer. She needed a code for Eli’s condition.
“It’s called Williams syndrome,” Gayle told her.
“Yeah, but what is it? A neurological disorder? Brain damage?”
Gayle started to explain: “Well, it’s a genetic disorder. Really it’s a neurodevelopmental disability. It’s sort of like autism but kind of the opposite . . .” She trailed off when she saw that the woman’s eyes had glazed over.
“I’ll put ‘neurological disorder,’ ” the woman said. Her fingernails clacked on the keys and she announced that the total came to $4.50. Insurance, she said, would cover the rest. Gayle wrote a check and walked out of the store so pleased with her purchase that the devastating absurdity of her victory—successfully acquiring the kind of bath chair favored by the over-eighty set for her preteen son—didn’t strike her at the moment.
It struck a week or so later, after the chair was delivered and installed, and after she’d written a sharply worded letter to the first medical equipment store complaining indignantly about its rude and incompetent sales staff. It hit her when a different sales clerk from the second store called to collect the rest of the $160.
“My insurance covered it,” Gayle said.
“Insurance never covers bath items,” s
aid the clerk.
* * *
THERE WAS NO MONEY LEFT over for music therapy camp. But Gayle couldn’t stop thinking about how great it would be for Eli. When she mentioned the prospect of a summer camp for kids with Williams, Eli seemed excited, although he later asked, “What’s ‘camp’?”
Gayle e-mailed the head of the Williams Syndrome Association to ask if she could get financial assistance. To her surprise, she did. That left transportation. Flying was out of the question financially, but driving was doable. She’d be staying with Eli at camp anyway: in the session for children aged six to twelve, parents bunked with their kids.
So at dawn one July morning in 2011, she and Eli embarked on a road trip to Michigan. The backseat was loaded with Eli’s favorite things: crayons and thick card stock that wouldn’t tear when he jabbed too hard, a plastic truck with bright green wheels for spinning, plastic sushi to chop, and a portable DVD player on which to watch his movie selections for the trip (The Lion King and a film called Fireside Reflections, essentially identical to the burning Yule log that airs on TV around Christmas). Before they left, Gayle positioned the DVD player on the back of the passenger seat and turned on Fireside Reflections.
“What do you want, roaring or flickering?” she asked, clicking through the DVD menu.
“Let’s hear . . . flickering!” Eli said. The flickering flames occupied his attention all the way through Connecticut, across the New York border, and into Pennsylvania. Then the questions began. He was particularly interested in the prospect of arts and crafts at camp. He’d asked Gayle many times already whether he could do craft projects there. The answer was always yes, which was what he wanted to hear. But now he asked again, looking up from the card stock on which he was scribbling furiously.
“Oh,” he said casually, as if this was occurring to him for the first time, “I am gonna do crafts?”
Gayle glanced in the rearview, where he caught her eye. “What do you think?” she asked.
“Yeah!” he said, nodding enthusiastically. He scribbled again for a minute or two.
“I’m going to do painting?” he asked suddenly, looking up with a worried expression.
“I don’t know about that,” Gayle said. “You’ll have to see what they have planned for you.”
Eli considered his crayon. “What time am I going to do crafts?” he asked.
“Well, there’s going to be a system. Do you know what a system is?” Gayle said.
“Instruments?” he asked. He knew there was a musical component to the camp, so it was a logical guess.
“It means there’s going to be an order to things, a schedule,” Gayle said.
“Oh!” he exclaimed, nodding. “When am I going to paint?”
Even if Gayle could have answered with a specific time—basket weaving at 2 p.m., painting at 2:30—she knew he’d still ask again and again. The answers themselves weren’t important. Many times he already knew them and could fill them in himself if she turned the questions around on him. But it made for a long car ride.
He had asked, “Where’s Michigan?” for the first time in eastern Pennsylvania. By western Pennsylvania, he’d asked it about a hundred times. Gayle’s first response was “A long way away,” but that only intensified the questions. Among the rolling hills of central Pennsylvania, she tried to divert his attention back to the present.
“It’s farther on,” she said, “but for now we get to enjoy a fun road trip and look at all this beautiful scenery.”
“What’s scenery?” Eli asked suspiciously.
“It’s out there,” Gayle said, gesturing through the windshield. “It’s those trees, and that valley.”
“But where’s Michigan?” he asked.
“It’s west,” Gayle said, her tone verging on exasperation.
“What’s west?”
“To the left of east.”
“What’s east?”
“We’re east. Connecticut is east.” Her tone was now fully exasperated.
So was Eli’s. “But where is Michigan?” he whined. “Can you tell me?”
“Eli,” Gayle said, sighing, “you need to learn to live in the now.”
“I do?” he asked, genuinely perplexed. “Why?”
“Because you need to relax,” she said, softening her voice. She smiled at him in the rearview mirror. “Enjoy the moment!”
He mulled this over. Then he asked imploringly, “But where’s Michigan?”
* * *
THE ROAD TRIP WAS A study in the varied responses Eli evoked from the general public. At a McDonald’s in Port Jervis, New York, an old railroad town on the Pennsylvania border, a woman washing her hands in the women’s restroom gave Gayle a sour look when she brought Eli in with her. Her look soured further when Gayle and Eli both entered the handicapped stall. The woman shook her head and stormed out of the bathroom, muttering something unintelligible, as though she were stalking off to complain to the management.
Gayle had gotten these looks before, but she couldn’t let Eli go to the bathroom alone. Apart from the possibility of encountering unsavory characters, there was the question of hygiene. She considered herself and Eli lucky that his digestive troubles were no longer so severe that he had to wear a diaper into his teens, as some kids with Williams did. But he was uncoordinated enough not to do a great job of wiping or of getting himself dressed again. When he tried to do it himself, he usually hiked his underwear halfway up to his chest and tucked his shirt into it. Gayle could never understand how he didn’t feel what must have been a colossal wedgie, but he was oblivious. Someday, in her quest to make Eli more independent, she knew she’d have to let him go by himself and just do the best he could. He’d come back with his underwear around his neck, but he could do it, she thought. But not just yet—not in a McDonald’s bathroom on the interstate.
* * *
GAYLE HAD PLANNED TO DRIVE until she got too tired, then stop at a roadside hotel. By the time she found a room in Toledo, Ohio, at around 11 p.m., Eli was rocking frenetically, wired from overtiredness and ADHD. His last dose of Ritalin had worn off hours earlier.
They waited at the front desk of the Red Roof Inn while a clerk began the slow process of booking their room. Eli rocked forward on the balls of his feet, his head bent so that he resembled a charging bull. Over and over he thrust his forehead toward the high marble countertop with enough force that Gayle feared he would crack his skull open. She pulled him back a foot or two. He continued to rock with the same velocity, but from a safer distance.
Another family walked into the lobby: a mother and father with two skinny teenage girls. By now Eli had begun to punctuate his rocking with small yipping noises.
“Eli, stop. Be still,” Gayle said.
“I think I’m ready,” he proclaimed loudly. He twirled his fingers, flexing his hands into claws. “What room number is it?”
The clerk apologized sheepishly. “I’m going as fast as I can,” she said, directing her words to Gayle, not Eli. “The system’s a little slow.”
Eli rocked harder. Behind him, one of the girls whispered something to their mother. The girls burst into giggles and then turned away, stifling their laughter. The mother smiled uneasily at Gayle and hushed the girls. Gayle stiffened. Eli turned with a half smile, hoping to be let in on the joke.
“Look forward,” Gayle said, nudging his shoulder with hers and pulling him in front of her. She trailed her arms across his chest protectively. He shifted in her embrace and snuck another look at the girls.
“Look forward,” Gayle repeated. Her voice was quiet but sharp-edged.
Gayle couldn’t be sure the girls were laughing at Eli, but a wave of indignation pulled her spine taut nonetheless. Eli continued to rock, a hopeful expression on his face. He kept turning to look at the giggling family. He smiled eagerly at them every time, waiting for someone to deliver the punch line. They averted their eyes from his, but he didn’t stop staring or smiling until Gayle shepherded him out of the lobby.
/> * * *
WHILE ENCOUNTERS LIKE THESE LEFT Gayle reeling, Eli never seemed to mind or even to notice. He considered every social interaction worthwhile, regardless of the outcome. And his track record showed that he was far more likely to win over strangers than to invoke mockery or disdain. When he was a toddler, hardly anyone turned away from his outstretched arms: most people hugged him back and appeared flattered by the affection. Now that Gayle was trying to wean him from hugging strangers, he still found ways to connect. Instead of hugs, he often sought small favors. At restaurants he’d invariably ask for something extra: more chips, more rolls, extra crayons for the children’s menu, extra children’s menus to color on. The thing itself seemed to matter less than the special attention being paid to him. It never occurred to him that he was overstepping his bounds or inconveniencing the waiter. In a world where everybody was already friends, there could be no bounds to overstep. Friends were always happy to help each other out.
Most people were, in fact, more than willing to accommodate Eli’s requests. At a diner where Gayle and Eli stopped along the road, Eli was enchanted by the spiral shape of the curly straw in his soda, and asked the waitress for another one. She brought him six. He was so thrilled that he summarily flattened them, one by one, against the table. Then he asked for a second round. This time Gayle waved the waitress away. She didn’t like Eli’s habit of seeking favors. She didn’t want him to be a beggar or to feel entitled to special treatment. She often thought of Eli’s kindergarten teacher, who had once warned her that this apparent perk wouldn’t work in Eli’s favor in the long term, because it let him get away with behavior that wouldn’t be tolerated as he aged. It would hardly be tolerated from most kindergartners. “He’s lucky he’s so cute,” the teacher said. Implied in her warning was the fact that, as for all children, Eli’s cuteness had an expiration date. His just had a longer shelf life, thanks to his pixieish looks and childlike personality.