Riding the Bus with My Sister
by Rachel Simon
Chapter Excerpt - The Journey
"Wake up," my sister Beth says. "We won't make the first bus."
At six a.m. on this winter morning, moonlight still bathes her apartment. She's already dressed: grape-juice-colored t-shirt and pistachio shorts, with a purple Winnie the Pooh backpack slung over her shoulder. I struggle awake and into my teacher-and-writer-off-for-a-day clothes: black sweater, black leggings. Beth and I, both in our late thirties, are eleven months apart, but we are different in more than age. She owns a wardrobe of blazingly bright colors, and can leap out of bed before dawn. She is also a woman with mental retardation.
I've come here to give Beth her holiday present: I've come to ride the buses.
For six years, she has lived on her own. In her subsidized apartment, a few blocks off the main avenue of a gritty, medium-sized, Pennsylvania city, each of her days could easily resemble the next—she has a lot of time, having been laid off from her job bussing tables at a fast food restaurant. She has enough money to live on, as a recipient of government assistance for people with disabilities.
But Beth also has something else: ingenuity.
This isn't a trait generally ascribed to people who live on the periphery of society's vision. Like indigent seniors, people with untreated mental illness, and the homeless, Beth is someone many people in the mainstream don't think much about, or even see.
Six months after she moved to her fifth-floor apartment, she realized that she was lonely, and had consumed all the episodes of The Price Is Right and All My Children that she could tolerate. So one day she decided to ride the buses. Not just to ride them the way most of us do, and which her aides had trained her to do a few years before. She wasn't interested in something as ordinary as getting from one location to another. She wanted to ride them her way.
It was, Beth recalls, October 18, 1993, when, for reasons she cannot remember, she first picked her monthly bus pass off her coffee table. Then she pressed 1 in her high-rise elevator, walked through the vestibule to the street, hailed a bus on the corner, climbed the steps toward the driver, settled into a seat, and looped through the city from dawn to dusk, trying out one run after another, bus to bus to bus. Soon she was riding a dozen a day, some for five minutes, others for hours, befriending drivers and passengers as she wound through the narrow streets of the city and its wreath of rolling hills. Within weeks she could navigate anywhere within a ten-mile radius, and, by studying the shifting constellations of characters and the schedules posted weekly in the bus terminal, she could calculate who would be at precisely which intersection at any moment of any day. She staked out friendships all over the city, weaving her own traveling community.
Beth's case manager had not suggested this, nor Regis and Kathie Lee, nor even Beth's boyfriend. This was her idea alone.
We hurry down Main Street, the moon setting behind the buildings. My guide, whose fuzzy brown hair is still wet from her morning bath, points out the identifying numbers on bus shelters, the scowls of grouchy drivers. She wears no watch, telling time instead by the buses.
We dart into the downtown McDonald's, already, at six-thirty A.M., filled with early risers: clusters of the elderly playing cards, the unemployed bent over newspapers. Beth orders coffee, though she doesn't drink coffee, palming out the eighty-four cents before the server asks.
Then we bolt into the dawn, making a beeline for a bus shelter. Head craned down the street, she giggles as she once did when I took her to a Donny Osmond concert: thrilled, in her element. She clutches her yellow radio and a tangle of key chains—twenty-nine, by her count—Cookie Monster, smiley faces, peace signs, which hold a total of two keys. She does a drumbeat on her laminated bus pass, stickered 000001. Every month she renews it, arriving first in line at the sales window. That sticker is her private coat of arms, proof that she's queen of these routes.
Our first bus draws up to the curb. The driver, Claude, throws open his door as if welcoming us to his house. Beth clomps aboard, arm thrust forward with the coffee. He takes the steaming plastic cup, then thumbs four quarters into her hand. "Our agreement," he explains to me.
Then she spins toward "her" seat—the premier spot on the front sideways bench, cattycorner from his, so she'll be as close to him as possible. I sit beside her; as a suburbanite who relies on my car and the occasional commuter train, it is my first time on a city transit bus in years. We pull out, past working class row houses, a Christian lawn ornament store, a farmer,s market, an abandoned candy factory, Asian grocers. Short, just-beginning-to-gray hair fans out from underneath Claude's driver's cap; Beth announces that he's forty-two, with a birthday coming soon. He laughs as she offers the exact date and explains just how he likes to spend his birthdays. "She remembers everything," he says.
He asks if she'll change into her flip-flops, should this chilly day become as balmy as the forecast predicts. "If iz over forty," she replies, "you know I will." He tells me they "jam" with her radio when the bus is empty. "Real loud," she adds. They recall some trouble with a rider months ago. "She was mean, " Beth says indignantly. Claude agrees, and recounts the altercation, in which a passenger vehemently challenged his knowledge of upcoming stops, and which culminated, after the malcontent had finally exited, in Claude's relief that Beth was sharing the ride—he had someone who could sigh along with him. Moments later, we pass alongside Beth's boyfriend on his bicycle. Also an adult with mental retardation, Jesse is paused at a crosswalk, his maple brown face pointing straight ahead, his blind right eye looking milky in the light, sun glinting off the helmet Beth long ago convinced him to wear. The decade they've been together is almost a fourth of their lives. Claude picks up his intercom mike, and calls out "Hello, Jesse!" Jesse looks over. We twist around in our seats, and his mustached face brightens as we wave.
All day, when we mount Jacob's bus, Estella's, Rodolpho's, one driver after another greets Beth heartily. They tell me she helps out: reminds them where to turn on runs they haven't driven for awhile, teaches them the Top Ten songs on the radio, keeps them abreast of schedule and personnel changes, and visits them in the hospital when they're sick. She assists her fellow passengers as well, answering questions about how to reach their destinations, sharing their consternation when the bus halts for double-parked delivery trucks, carrying their third bag of groceries to the curb.
In return, many riders smile hello to her, and ask how she's doing; many drivers are hospitable, even affectionate. Jacob asks if she has gotten a new winter coat, and if the homeless woman who clashed with her last month has bothered her again. Jack slips her money for soda. Bert squawks out songs, making her laugh at his jaggedy tunes.
Not everyone is nice. Some drivers, I learn, call her The Pest; when they see Beth at a stop ahead, they cruise right by, gaze glued to the road. Some riders warn them, crying out, "Keep going!" when they spy her waiting on the curb, and, if she climbs on, they bleat in her face, "Shut up! Go home!"
"I don't care," she shrugs. When we were growing up, I saw a twinge of anguish on her face whenever kids called her poisonous names, and sometimes the hurt took hours to fade. Now, I see that, surrounded by friends, she regains her composure quickly.
That's not all that has changed, I discover. Beth, once a willful child who, like many willful children, felt most secure at home, has grown into an extravagantly social and nonconforming adult, one who creates camaraderie out of bus timetables, refuses to trouble herself when people look askance at her—and, in a buoyant refutation of the notion that mental retardation equals sluggishness, zips about jauntily to her own inner beat. My sister (My sister! I boast to myself) maneuvers through the world with the confidence of a museum curator walking approvingly through her galleries, and, far from bemoaning her otherness, exults in it.
That afternoon, as I step to the curb and wave goodbye to her through the bus window, I am pierced by a sudden memory, minted only this morning. She was sailing her short, stout body across the street toward McDonald's, I was scrambling behind. And in the predawn moonlight, as she chattered on about our labyrinthine itinerary, well aware that there are few if any other people in this world devoted to a calling of bell cords and exhaust fumes, she spontaneously threw back her head and trumpeted, "I'm diffrent! I'm diffrent!" It was as if she was hurling a challenge with all her might beyond the limits of the sky.
In the course of my life, cars and trains and jets have whisked me to wherever I wanted to go, and I was going places, I thought; I was racing my way to becoming a Somebody. A Somebody who would live a Big Life. What that meant exactly, I wasn't sure. I just knew that I longed to escape the restrictions of what I saw as a Small Life: friends and a family and a safe, unobjectionable job where I could earn a passably adequate income. Although this encompassed just the kind of existence many people I knew were utterly content with, I wanted something more.
Then in the winter of my thirty-ninth year, I boarded a bus with my sister and discovered that I wanted broader and deeper rewards than those I would find in the Big Life.
At the time, I thought I had my life under control. In addition to having published several books, I was teaching in college as well as to private students, writing free-lance commentary for the Philadelphia Inquirer, and hosting events at a bookstore. I adored everything I did, which is more than many people I knew could say.
But, though I wouldn't confess it to myself, I worked all the time. Seven days a week, from the minute I threw off the covers at seven A.M. until I disintegrated back inside them at one A.M., I leapt like a hare through my schedule: Write article à Grade student papers à Interview newspaper subject à Book author for store signing à Teach private class à Take notes for next novel à Eat à Crash.
My life, I told myself, bore little resemblance to workers in corporate America. After all, I made my own schedule, and wore comfy leggings and sweaters at my desk, saving the A-line skirts and blazers and lipstick until I drove out to class or the bookstore. To unwind, I took vigorous walks whenever I pleased, keeping my five-foot build lean and fit. But who was I kidding? I was like most of my peers: hyperbusy, hypercritical, hyperventilating.
As a result, I bricked in all the spaces in my week when I might have seen friends, and so it followed that I lost many of my friends. I lost my opportunity to indulge in almost all leisure activities as well: no movies or plays, and, though I continued to purchase new novels, and routinely carted home any intriguing texts I found on the free "Take Me" shelf of books at school, dust settled on the pages like snow, as I had time to read few books beyond those I needed for my work. But perhaps the greatest forfeit was love. I'd had a few awkward dinner dates in the four years since my longtime live-in romance had come to a mutually tearful and reluctant end, and even those strained opportunities had petered out. Alone in my apartment in the Philadelphia suburbs, dining at my desk most nights, I occasionally browsed the personal ads. But then I'd open my date book, remember that I had no time to meet even for coffee, and turn back to my work.
This had not always been me. Until I found myself single, my evenings had been filled with dinner parties and art openings and reading groups and two-hour calls with my girlfriends. That is, when my nights weren't already occupied by relaxed conversations on the sofa with my boyfriend Sam, where we'd go on about books and politics and the seductive lure of the Big Life, our exchanges interrupted only when he'd get up to flip through his voluminous record collection, then set the needle on recordings by, maybe, Miles Davis or the English folk musician Nick Drake. I don't know when things stopped working for us; I just know that when he asked me to marry him I could not bring myself to make the commitment. Finally, in a blur of grief and regret, convinced I should let him move on with his life, I left. I took only my necessities—computer, desk, and clothes—and camped out at one cheap rented room after another while I tried to make sense of my life, and of what seemed to be a stony heart. It didn't help that for years I had subsisted on Sam's architect's salary plus my writing jobs, and now, in one of those unnerving coincidences of fate, they suddenly dried up. Those first few months on my own, I was so lonely and broke that, waking on my air mattress during the night, clinging to a pillow, my stomach would seize up, and I'd lie awake until morning, During the day, catching my reflection in my computer screen and seeing only failure, I'd feel my face tighten with terror.
Finally, I accepted a job at a bookstore, and, as luck would have it, started publishing at the Philadelphia Inquirer. Then, marveling at the dollar signs sprouting in my check register, and discovering that, with each new newspaper column and wave of bookstore applause, I felt myself on my way to the Big Life, I accepted positions teaching as well. I rented an apartment and purchased a bona fide bed, but did not acquire a stereo or TV, as I hadn't missed either enough to replace them. And I worked. I worked until I was so exhausted I fell back asleep easily when I woke during the night. I worked until I forgot I was lonely, until I could not conceive of any other existence.
I hadn't seen Beth in a couple of years. We stayed in touch through letters; once a week I'd scratch out a card, and in return she'd cascade fifteen back. Her letters consisted of two or three multi-capitalized sentences sprawling down the page, sprinkled with periods, which she'd then fold into envelopes flamboyantly tattooed with stickers, and address in fall-off-the-paper print. I relished finding these treats populating my mailbox, whole colonies arriving in a single day. In magic marker scrawl, they gossiped about our younger brother (I aM Glad that. Max got a new rED car. when he Came with his kids. good.) and older sister (Laura sent Me. a gift Thing for WAlmart), educated me about the latest Top Ten (Do you. like In Sinks I want you back. I do.), and revised my knowledge of Jesse's athletic achievements (Jesse did do that big race. WoW.). Best of all, they climaxed in a spunky declaration that defied the world's cliché of her as an uncomplicated half-wit, signed as they were, "Cool Beth."
But when I phoned her occasionally, the conversations were clumsy and joyless. She never volunteered information about herself, and when I divulged even meager scraps about myself, she made no effort to respond. This annoyed me, as it did the rest of the family, and like them, I didn't know what to say or ask. After "Hello," our dialogue rapidly disintegrated. Finally, resorting to the I'm-the-older-sister-she's-the-little-sister pattern I knew so well, I'd offer blandly, "Did you hear about the Ninja Turtle mug giveaway at that fast food place?" "How was your talk with Mom?" These would allow us to trudge ahead for a few minutes, Beth scattering a few monosyllabic crumbs in my direction, me telling myself, Okay, it's boring, but it's brief. When we got off the phone my shoulders would be as rigid as if I'd just marched into combat.
Sometimes she'd call collect. "Iz my birfday, can you visit?" or, "Iz nice out. Come over." But she lived hours away, in a city I didn't know my way around; I'd already been long out of the house before she'd moved to the area with our father. Endure both geographic confusion and labored communication? "Sorry," I'd say. "I can't."
Besides, she did this, this bus thing, and, like the rest of our family, I found it difficult to accept. Some days its sheer oddness baffled me; other days I was disheartened by her choosing to master bus routes over sticking with something productive like a job. I had long embraced eccentrics in novels, cheered on iconoclasts I encountered in newspaper stories, and even regarded with fondness the freight-hopping hobos of yore. Yet I was too dismayed by Beth's peculiar devotion to the buses to be willing to acquaint myself with her life. In fact, I had rarely even admitted it to friends and colleagues who, once they learned that one of the three siblings I'd mentioned had mental retardation, seldom asked anything besides whether she had Down Syndrome (no), and what her "mental age" might be. Mental age. It was as if they thought that a person's daily passions—and literacy skills, emotional maturity, fashion preferences, musical tastes, hygiene habits, verbal abilities, social shrewdness, romantic longings, and common sense—could all fit neatly into a single box topped, like a child's birthday cake, with a wax 7, or 13, or 3. When I was unable to supply her "mental age," they'd ask whom she lived with, even if I'd already told them she lived on her own. It would then become clear to me then that their understanding of mental retardation had never moved beyond the stereotype of the grinning, childlike dependent. This exchange was so routine, and had been for so many years, that my dismay had long ago dissipated into acceptance, and with that had come the realization that I would always hover between two worlds, with mental retardation over here, "normal" cognitive functioning over there, and that I would have to convey information from one to the other, never quite belonging to either. My friends seemed relieved to learn that people with mental retardation are individuals. I was relieved to omit just what an individual Beth happened to be.
In letters or on the phone with Beth, I sought to ignore her deepening allegiance to the buses by focusing on practical matters. Has KFC had any openings since they laid you off a few years ago? Would you like help obtaining a library card? She communicated her resentment with sullen "I don't knows" or a silence as deep as sleep.
So for years I essentially let her become a stranger. Though sometimes at night, when I was at my desk and happened to glance outside and spy the moon saluting from above the treetops, I'd remember how fascinated she'd been by it when we were kids. Sitting at my desk, I'd shake my gaze away from the window, but moonlight would still illuminate my papers. Her stickered letters glared up at me, as the guilt of being a "bad sister" once again reared up inside me.
Then one winter morning when Beth was thirty-eight and I was thirty-nine, and I was too exhausted from my daily triathlon to come up with an idea for the newspaper, I mentioned to an editor that I wanted to visit Beth for the holidays but was, as always, perplexed about how to negotiate the dilemma of her buses. "Say what?" he said, and, embarrassed, I explained. "How interesting," he said. "Take a day to ride with her, and write it up for your next piece."
I did ride with her, and over that day I was touched by the bus drivers' compassion, saddened and sickened by how many people saw Beth simply as a nuisance, and awed by how someone historically exiled to society's Siberia can not only survive, but thrive. Indeed, the Beth I remembered from years ago had a heavy, ungainly gait; the Beth I saw now was not only nimble-footed, but her demeanor was exuberant and self-assured. I was aware of my earlier objections to her bus riding, but they began to feel inexcusably pathetic.
I wrote the article, and as soon as it appeared, it created a stir. Postcards and emails arrived from strangers; acquaintances flagged me down in the bookstore to shake my hand. Beth was tickled: people were paying attention to her and her beloved drivers. The piece was picked up by papers all over the country, generating more tides of enthusiasm. I kept calling to tell her, and so we started talking more. Her letters, which soon poured into my mailbox in even greater numbers, felt all the more special. I finally knew what to ask, and now she wanted to answer.
Yet I was too busy to dwell upon the pleasure the article's success gave me. Actually, I was too busy to dwell upon much of anything. I realized this one day when, throwing clothes into a suitcase during the ten minutes I had allotted to pack for a business trip, I glanced outside. A neighboring family was playing together on a mild winter afternoon. There, beside their tree swing, stood the dad—not a Big Person with a Big Life, but an unassuming person with a richly quiet life—as each of his four children lined up for a push. I started to smile as I zipped up my bag, but discovered to my horror that the muscles in my face no longer seemed to work.
That night, I lay in my hotel bed in a chill, suddenly unable to keep my loneliness stuffed inside its cage. What if my breathless daily grinds only led to more breathless daily grinds? What if I closed the door forever on human connection—never again shared a relaxed afternoon laughing with a friend, forgetting to look at my watch? Or spent a day, a whole day, simply enjoying the company of a man? What if work was it?
A few days later, hurrying through my mail, I came upon an envelope from one of the agencies that works with Beth. I opened it to find an invitation to attend something called her annual Plan of Care review.
I held up the letter to reread it, and slowly comprehended its significance: She had asked that I be included. In the eleven years since she had left home, this meeting—which I'd been vaguely aware of through the report that gets mailed to each family member, and which seemed to cover matters like finances and health—had been attended only by her aides, not family. But clearly, my ride on the buses had meant a lot more to her than just a few words in a newspaper.
I flipped open my date book. The January day was not ideal, but if I cancelled this and rearranged that, I could manage it. I RSVP'd "Yes."
On a brisk January afternoon, while last week's snow still dots the streets, the mirrored elevator zooms me toward the eighth floor of the agency's skyscraper. As the numbers light up—4, 5—I wonder what to expect. The elevator feels leathery and professional, a part of my world, and with a catch in my throat that's somewhere between caution and excitement, I know that as soon as I emerge, I'll be in a land with rules and people I don't know—6,7—and will feel as cloddish and bewildered as Alice emerging from the far end of the rabbit hole.
The doors open, and Beth is standing before me in the marble corridor.
At four foot ten, with unzipped regal purple coat, buttercup-yellow pants, and an oversized orange marmalade-colored Eeyore t-shirt, she cuts a grand Day-Glo figure in this corporate environment. Although Beth has the same kind of face as the rest of our family—oval-shaped brown eyes, curved nose, brunette ringlets, squirrelly cheeks—you immediately know when you first see her that she is different in some way, given her unique fashion sense and her loud and spirited manner. "Hi," she says.
I set my briefcase down to give her a hug. I feel as if I tower over her as I lean in close, and my tailored black overcoat, burgundy skirt, and black velvet blazer seem not understated as much as entirely underdressed. We wrap our arms around each other, though I know it will be fast; she doesn't like to be touched, she has admitted to me, but hugs me because I like to.
Still, her squeeze, quick though it is, is just long enough for me to uncork a sudden memory: we are three and four years old, admiring a spider web under the house in the shadows of the lattice, and I am tickling her legs in the grass-scented shade. Eventually I grew into my life, smoothing down all the quirks that would make me stand out, while Beth nurtured all the quirks that ultimately produced this imp in my arms. How had we come to evolve as we did, I wonder, as she pulls away from me. We were born into the same family, we relished the same simple moments, and, until a certain sleeting February afternoon when we were teenagers, we shared the same major losses and joys. Yet we turned out so differently. Is it just her mental retardation that made her who she is, or did her experiences after, or even before, that February day somehow spin her personality in this direction? Memories flicker through my mind as I try to trace the thread back to the beginnings of my irrepressible sister.
"Down here," she says, wheeling about and hastening along a corridor of office doors, her feet turned out in her customary divining-rod style. "I wore pants today because iz thirty-two, but iz supposed to be forty later so I'm gonna change to shorts."
Shorts. Always shorts, and often her trademark violet sandals or blueberry flip-flops, as long as the temperature is above forty. I think it has to do with vanity. Not that she feels she's got Rockette legs, nor does she even have a full-length mirror in her apartment. And, though she draws attention to her sandaled feet by painting each toenail a different fluorescent color, glamour isn't the point either. It just seems imperative to Beth to show that she can brave the cold when the rest of us bundle up.
She patters into a conference room. Around the rectangular table sit three women: red-headed Vera, blonde Amber, brunette Olivia. The room is not large, and Vera and Amber, in their casual sweaters and pants, have set up at one end of the table, while Olivia, arrayed in a navy blue pants suit, occupies the other.
"Have a seat," Olivia says to me after I shake their hands, realizing that although Beth has peppered her letters with their names, I know nothing about what each one does for her or, for that matter, anything about the system at all. I settle into a cushioned chair across from Beth.
"Let's start with finances," Olivia says. She is a pretty, tall woman in her early forties, with an alabaster complexion and raven hair that she wears long, her bangs framing a pair of extraordinary eyes. They're turquoise, I see, as she pages through her paperwork. Navaho barrettes, studded with stones the same color as her irises, clip back her hair.
"Okay, finances," Vera says, lifting up a paper. She's somewhat older; petite, pacific, bearing the aura of a no-nonsense grandmother. She speaks slowly, her words shaped by a subtle Spanish accent. "Beth currently receives $527.40 from S.S.I," she reads from her page.
"What does that stand for?" I ask. "Social Security?"
"Iz my check evrymonth," Beth says.
"It stands for Supplemental Security Income," Amber explains. Perky and gum-chewing, blond hair swept back from her face, she's the youngest of the three by at least a decade.
Olivia, friendly and easy-going, who seems to be running the meeting, elaborates, "S.S.I.'s a Social Security program that gives monthly benefits to people sixty-five or older, or blind, or who have a disability and can't work, provided they don't own much or have a lot of income."
Vera goes on, detailing how much of the S.S.I. money goes to Beth's subsidized apartment, groceries, phone, cable, burial fund, spending money, and bus pass—"the most important thing."
"It sure iz," Beth says. "You know it."
I suddenly remember that Vera visits Beth in her apartment a few times a week; she must be the person whom the drivers call Beth's aide. Amber seems to work with her. At last, the cards are shuffling into order. I find myself nodding, suddenly understanding—and almost miss Olivia saying, "On to health."
Amber pulls out a report written by Mary, who, I'm told, is Beth's medical case worker. "Your weight is 166 right now," she says as Beth shrugs, "and your cholesterol is still too high."
Vera says, "It's those Ring Dings and chocolate pudding, and the way you eat on the bus instead of going home for meals."
"I eat what I like," Beth says. "I eat hot dogs too, and spaghetti and meatballs, and cream cheese on bagels, and macaroni and cheese."
Vera says, "Those foods are not going to help your cholesterol. You could develop heart problems."
"Thaz not gonna happen."
Amber simply continues. "It's been a few years since you've seen a dentist."
"I brush my teeth."
"For a thorough cleaning, honey," Olivia says.
"They can look in my mouth, but I'm not letting them put their fingers in. I'm not doing that." I learn that when dentists have tried that, her reflexes have immediately assumed command, compelling her to shove them, quite forcefully, away.
They drift off into a discussion of where to find someone who'll take her medical assistance card, and who also has experience with patients with special needs. My attention strays, and I glance at Beth. She's not engaged either, so we make eyes at each other, as if once again we're little kids at a dinner party of adults who are up to serious and mysterious business. It's easy to fall into this with Beth.
"Your uterine fibroid seems to have stabilized," Amber goes on, as we return to the discussion. "But the eyes really worry me. She has a rare condition. Her corneas are becoming scratched and opaque, and it's affecting her vision."
"Is that why your eyes have looked foggy for the past several years?" I say.
"I don't know."
"Does it affect your vision?" I ask.
"I don't know."
"Yes," Vera says. "I help her with eye drops a few times a week. And she's got a follow-up appointment with the doctor in a few months."
I peer at Beth with concern. Again, she shrugs.
Then they review what Beth is not: a drug or alcohol user, a smoker, a person with high blood pressure. I peek across the table at the paperwork. Olivia is updating a typed sheet that lists something called "Diagnosis" and beside it is written, "Mild Mental Retardation." I also make out, on a different set of papers, that Olivia is Beth's "case manager," Vera her "program assistant," and Amber her "team coordinator." Whatever all that means. I have never thought about any diagnosis besides the blanket term of mental retardation, and god knows I haven't a clue about what any of these titles designate. It all seems quite complicated, but I feel too self-conscious about my ignorance to ask them to clarify anything for me.
"Safety," Olivia says.
"Sometimes you walk in the street," Vera says.
"When there's snow."
"Can you walk on the sidewalk?"
"You need to do better than try," Vera says.
"You could get hurt," Olivia says.
I glance around, and detect what my own little-kid mode had prevented me from noticing: their tense brows and exasperated slumps. Beth now sees this too, but rather than give in to what they want, she says, "I know how to use 911. I know what to do if there's a fire. I don't go out in the dark ‘cept for the early bus. And if anyone gives me trouble, Jesse'll look out for me."
"We just want to make sure you're safe," Olivia says.
With quiet defiance, she says, "I'm safe."
"Okay," Olivia says, writing, as I hear a sigh coming from one of the others. "Now, what are your important relationships?"
Beth gives everyone at the table an as-if-you-don't-know grin. "Jesse. The drivers: Jack, Bailey, Rick, Timmy. And my little brother Max brings his two kids to visit sometimes, they live a few hours from here, and I talk with my mother on the phone sometimes, she lives in North Carolina. Dad lives across town, and Rachel near Philadelphia, and our older sister Laura lives in Colorado. I write them letters—sometimes."
She sits back, giving me a different sisterly look, one that says, Of course we both know why it's like that. I glance at Olivia and Amber and Vera, and I can see in their eyes that they know it too: the family rarely visits Beth because there's too much friction. I think about the issues we discuss when we talk about Beth. Some family members say they're tired of speaking with a person so disinclined to respond that she might as well be invisible. Others have waged a campaign for her to shrink to a healthier size, only to retreat from the futility of it all. Then there are the buses. Our mother has actually met with Beth's support people over the years, begging them to make Beth get a job, a volunteer position, just something to encourage her to be a fuller member of society. They replied that they'd do whatever Beth wanted, and that wasn't what she wanted. Since then, the family has spoken of "them" with distrust, or sometimes disdain. We're suspicious of their guiding principles, not that we know what those principles are. We haven't asked, and they haven't thought to offer.
But they are sitting before me now, one, two, three individuals, not a "them" at all, and I see that they are only doing what Beth wants. Besides, I know how contrary she can be when not given her own way. If she doesn't want what you're proposing, no matter how kind or encouraging you might be, you'll simply get back the same response: "Stop bossing me around."
"What are your dreams for the future, honey?" Olivia asks.
"To go to Disney World with Jesse. To live with my niece and nephew for one day."
"What about the coming year? Do you want to take any classes?"
"Do you want to join any organiz—"
"Do you want—"
We get up to leave, and as we shake hands, Olivia tells me to expect her written report on this Plan of Care meeting in a few weeks. But now that I understand what it is, I also know what its conclusion will be: "Beth does not wish to change anything."
Though that's not quite true. There is one thing she wants to change.
I discover this after the meeting. I'm all set to take her to lunch, some cheery place where our worlds can stay merged from the menu to the check before we exit into our separate lives. But the moment we finish up with Olivia and the others, shuttle down the elevator to the lobby, and open the doors into the sunlight, Beth launches herself full speed up the street. Her purple jacket billows behind her, and her tiny feet fly like wings.
"Where are we going?" I call out, stumbling behind in my pumps and overcoat, clasping my briefcase to my chest.
"Jacob, or Bert, or Henry—whoever we can get to first! Come on!"
Wait a minute, I think, jumping over ice patches. I volunteered to ride along for one article. I wasn't enlisting for life.
At a corner she slows to a stop, and sights a bus bearing toward us from the distance. "Look! I knew we'd make it!"
"So this is what it is?" I say, catching up to her. "Whenever I see you, I ride the buses?"
I check my watch. A student is expecting me after lunch, someone whose novel-in-progress I care about a great deal. Then I peer back at the skyscraper we left minutes ago, where I met with people who care equally deeply about Beth. A coldness rolls through me; it occurs to me that I couldn't assemble a crew who would know so much about me, and, should I be asked about my important relationships, I could no longer supply such a long list.
"You could try it," Beth says. "Just for a while."
The bus is one corner away. I'm sure my student is wondering how much longer he'll have to wait.
"I don't think I…" But Beth is giggling, perhaps in anticipation of the driver at the helm, perhaps in amusement at me; and my habitual refusal trails off into silence. Well, I consider, buoyed by her laughter, great-hearted and wily at the same time, it is beneficial for her to see family under her own flag. I could stop feeling like a bad sister—stop fleeing from intimacy with this person I have known all my life—if only for one afternoon.
"Um, how much of a while?" I ask. "Like till three or four o'clock?"
"No," she says, drawing out the word as if coaxing me to guess a secret. Then, as the bus swings toward the curb, she expresses her wish. "They see me evry year," she says. "So do it like me."
"What do you mean?"
"A year," she says.
"What?" I can't have heard that right.
She grins. "Do it for a year."
I look nervously at her. "A year?" That's two semesters of student papers up in smoke! Four seasons of newspaper pieces—twelve whole months of articles and authors and conferences and my comfortable bed and mornings that begin after, not before, the birds, and salads at a table instead of Ho-Ho's in a bus seat. A year. "You're kidding," I say.
"You could try," she says. "You don't have to ride evry day."
I see the thrill of the dare on her face. All right, I think, let's say I didn't do it every day—hey, I barely have time to breathe, how will I have time to ride a bus?
She tilts her head back, as if waiting for me to chicken out. I hold her look, calculating wildly when I could shift my meetings.
The bus berths at the curb, and the door opens before us. "So?" Beth says, wearing a teasing face that's melting into hope.
I stare at her.
"Well?" she says.
And I think, You need to do this, even if you don't know where it will take you.
I draw in a mighty breath. "O...kaaay," I say to Beth.
"Really?" she says.
"Yes," I say, more emphatically, and as I say it, I know I will do it.
"And how much will you come?"
"Uh," I say, stalling. "What about every two weeks?"
"What about more?"
I pause, and exhale. "I'll try my best," I say. "Whenever I can, I will."
With trembling hands, I fish in my coat pocket for a token. A golden token that cost $1.10: the price of admission for this odyssey. Beth is bounding up the stairs toward the fare box, radio in her hand. I look down at my briefcase, then up at Beth standing at the top of the steps, ushering me into her world. A year, I think. For her. Just one year. I rest my hand on the railing. Then, not knowing where this bus is going, I hop aboard her life.
The Time of Snows and Sorrow
This is a story we tell in my family.
"I'm worried about the new one," Mommy says to our neighbor Mrs. Stein. "I think something's wrong with her."
Mommy is holding baby Beth in our New Jersey yard, leaning over the picket fence between the two houses. Roses bloom everywhere. Laura and I run around on the grass.
"Oh, now, don't worry," Mrs. Stein says. "She's only two months old."
"But her birth…it wasn't like the others. They gave me a drug so I wasn't conscious during the delivery. Later they told me they'd had to use forceps, and they squeezed her head."
Mrs. Stein moves closer. Her two girls wave to Laura and me through the picket fence.
"Maybe your hands are too full," Mrs. Stein says. "Laura's only two and a half, and Rachel's just over one year. With three under age three, I know I'd be a meshugene."
Mommy sighs and looks down at Beth. She just lies there like a doll, not moving at all. "I think that's why I didn't notice anything at first," she says. "But then, when she was maybe five weeks old, something struck me as not right…"
Mrs. Stein's girls come over, they stand as high as her knees. We can't reach them, so Laura and I start spinning round and round and then they giggle and do the same.
"Ach, what can anyone really see at five weeks?" Mrs. Stein says.
"She just wasn't reacting like the other two had. She'd lie in her crib, staring for hours. You could clap your hands above her head, and she wouldn't look. You could come near, and her eyes wouldn't focus on you. Her expression was always…empty."
"She'll catch up."
"She's still like this. Except when she arches her back and holds stiff, but she barely moves her legs or arms. And she doesn't cry."
"Even when she's hungry?"
"No. I'm afraid that she's…I don't know."
Laura and I spin into a heap. The girls over the fence do, too. Mrs. Stein is looking into Mommy's arms at Beth.
"She's just a little baby," she says. "Don't worry about it."
Mommy's eyes are fixed on Beth. Her face is tight and scared.
Every day, Mommy stands beside Beth's crib. Sometimes Mommy holds her up to sit, but then Beth's head just droops to the side. She can grasp a little, but she won't reach.
Grandma comes over some mornings, and Mommy sits with her in the dining room, drinking coffee, whispering. At night, Daddy comes back from the school where he teaches and stands at Beth's doorway, staring with Mommy. "Tell the pediatrician," he says.
Laura and I are waiting with Grandma in the doctor's office, and Mommy comes out with Beth. She's got that sad look. "He did the exam," she tells Grandma, putting us in the strollers. "But he says nothing's wrong."
"He says I'm just a worrying kind of mother," she says the next month.
"He says I should just relax," she says a month after that.
Finally, when Beth is six months old and Mommy goes on to the doctor about Beth again, he picks her up in his arms and throws her up in the air. She does a somersault up by the ceiling, right in front of Mommy's eyes, and he catches her as she comes tumbling back down.
Beth's expression doesn't change at all.
"You're right," the doctor says. "There's something wrong."
"I'm finding another doctor," Mommy says to Grandma when she comes back to the waiting room. Then she whispers, "We're thinking she may be retarded." Mommy fits my boots onto my feet. "But oh god, I hope we're wrong."
Right after the new year, on a windy, flurrying morning when Beth is seven months old and still not crawling, she goes to stay for many weeks in a children's hospital in Philadelphia. A special doctor there will try to find out if Beth is what our parents worry she is, and why, and what to do about it. Mommy and Daddy are both from northern New Jersey, and have never been to Philadelphia, but they've been told this doctor is the best. They'd drive to Mars for the best.
The doctor studies everything medicine knows about in 1961—the papers I later see use big words like red cell fragility, platelet count, electrolytes, spinal fluid, amino acids in the urine, skull x-rays, EEG. He biopsies some tissue on her leg to search for signs of diseases common to Ashkenazi Jews, because that's what we are. The biopsy leaves behind marks on Beth's thigh, white lines like a train track to nowhere.
Every weekend, Grandma takes care of Laura and me while Mommy and Daddy drive the three hours to the hospital. Snow pelts the roads. The icy streets are narrow, and sometimes the car skids. Week after week, they enter the hospital and walk to her room, seeing things they'd never seen: babies with oxygen tubes, babies with IV's, the hollow faces of bald children, weeping parents. Then they reach her room, and the doctor turns to them, and announces that there are still tests to be done, but that Beth has shown no improvement.
They drive home in the snow, demoralized.
Then, after four weeks, the doctor calls and requests a special visit. This is the one, they know. The one where they'll finally learn it all.
They get to the hospital. Someone tells them the doctor will meet them soon, and they stand at the end of a long corridor, trying to breathe through the moments. They stare down the hall, waiting for a glimpse of his approaching form.
Finally he rounds the far corner and comes toward them. Not striding, just walking slowly. His face darkens as he draws near.
Then he is in front of them. They stand in silence. At last he puts his hand on Daddy's shoulder, and takes a deep breath. "We know she's retarded," the doctor says, "but we don't know what caused it. I'm sorry. There is nothing left that we can do."
Mommy collapses into herself. Daddy stumbles back. Their daughter is mentally retarded, and they don't know why. All they know is what they've learned in the last month: that she will not develop normally. That she will have limited intellectual, emotional, and maybe even physical capabilities. That, given her current progress, she might be bedridden for life, and communicate in grunts and groans.
They bundle her up and take her home, wipers clearing the snow from the windshield. Laura and I run to hug them as soon as they come in, and then they teach us the two biggest words I'll ever know, two grown-up words about our sister.