Riding the Bus with My Sister

Copyright © 2002 by Rachel Simon
All rights reserved

For information about permission to reproduce selections from this book, write to Permissions, Houghton Mifflin Company, 215 Park Avenue South, New York, New York 10003.

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The Library of Congress Cataloging-in-Publication data is available.

ISBN 0-618-04599-6

eISBN 978-0-547-34484-3
v4.1114

For Cool Beth

Author's Note

Some of the individuals who participated in this story asked me to change their names. In the interest of honoring those requests in a way that would not tempt readers to sort out the real names from the invented, I chose an egalitarian approach and altered everyone's name, except for my sister Beth's and mine. In addition, I changed details about the location to help preserve Beth's privacy.

JANUARY

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 clothes: black sweater, black leggings. Beth and I, both in our late thirties, were born 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 busing 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 trait isn't 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 the first-floor button 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 had Regis and Kathie Lee, nor even Beth's boyfriend. This idea was hers 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, solitary office workers 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, Beth 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, catty-corner 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 farmers' market, an abandoned candy factory, Asian grocers. Short hair, just beginning to gray, 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 then explains 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 Beth's boyfriend on his bicycle. Also an adult with mental retardation, Jesse has paused at a crosswalk, his maple brown face pointing straight ahead, his blind left 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 more than 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 a while, 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 says and 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, she 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, and I was scrambling behind. 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!" as if she were 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 that would pay me a passably adequate income. Although this package 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 college as well as holding classes for 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 of my acquaintances 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 → Grade student papers → Interview newspaper subject → Book author for store signing → Teach private class → Take notes for next novel → Eat → Crash.

My life, I told myself, bore little resemblance to the lives of 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 them. 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 "Take Me" shelf 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 datebook, remember that I had no time to meet 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 phone 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 in 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 my stomach would seize up during the night and I'd wake on my air mattress, clinging to a pillow, and 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 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 it. 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 multicapitalized sentences sprawling down the page, sprinkled with periods, which she'd then fold into envelopes flamboyantly tattooed with stickers and addressed 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 meager scraps about myself, she made no effort to respond. This combination of guardedness and lack of interest 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-you're-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 queries would allow us to trudge ahead for a few minutes, Beth scattering 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 . . . 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 and cheered on iconoclasts I encountered in newspaper stories, 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 become clear to me then that their understanding of mental retardation had never moved beyond the stereotype of the grinning, angelic child. 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 know"s 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 not only survived, but thrived. 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 feeble.

I wrote the article, and as soon as it appeared it created a stir. Postcards and e-mails 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 a tide of enthusiasm. I kept calling to tell her, and 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 let myself feel much of anything: 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 that mild winter afternoon. There, beside a 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 led to only 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: Beth 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 datebook. The January day was not ideal, but if I canceled this and rearranged that, I could manage it. I called to RSVP: "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 falls somewhere between caution and excitement, I know that as soon as I emerge, I'll be in a land of 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 feet ten, with unzipped regal purple coat, buttercup yellow pants, and an oversized orange marmalade Eeyore T-shirt, she cuts a grand Day-Glo figure in this corporate environment. Although Beth looks like the rest of our family—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; Beth doesn't care 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: redheaded Vera, blond 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.