Riding the Bus With My Sister: A True Life Journey

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Authors: Rachel Simon

Tags: #Handicapped, #Bus lines, #Social Science, #Reference, #Pennsylvania, #20th Century, #Authors; American, #General, #Literary, #Family & Relationships, #Personal Memoirs, #People with disabilities, #Sisters, #Interpersonal Relations, #Biography & Autobiography, #Family Relationships, #People with mental disabilities, #Biography

BOOK: Riding the Bus With My Sister: A True Life Journey
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Riding the Bus with My Sister
A True Life Journey
 
Rachel Simon
 

HOUGHTON MIFFLIN COMPANY
BOSTON · NEW YORK
2002

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.

Visit our Web site:
www.houghtonmifflinbooks.com
.
Visit the author's Web site:
www.rachelsimon.com
.

Library of Congress Cataloging-in-Publication
Data is available.

ISBN
0-618-04599-6

Book design by Robert Overholtzer

Printed in the United States of America

QUM
10 9 8 7 6 5 4 3 2 1

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.

Contents
 

JANUARY

The Journey 3

The Time of Snows and Sorrow 21

FEBRUARY

Hitting the Road 27

The Professor 31

Fighting 42

MARCH

The Pilgrim 49

Streetwise 58

Into Out There 67

APRIL

The Dreamer 81

The Drivers' Room 88

The End of Play 96

MAY

Lunch with Jesse 107

Matchmaker 123

The Pursuit of Happiness 127

JUNE

The Earth Mother 133

Disabilities 141

Goodbye 152

JULY

The Optimist 157

Break Shot 168

Gone 171

AUGUST

The Loner 175

Nowhere 189

Be Not Afraid 190

Inside the Tears 195

SEPTEMBER

The Jester 201

Surgery 209

Releasing the Rebel 216

OCTOBER

The Hunk 225

The Price of Being Human 233

Come Home, Little Girl 238

NOVEMBER

The Girlfriend 247

The Eighteenth Hole 252

DECEMBER

Swans and Witches 265

Finding the Twin 272

Iz Gonna Be All Right 275

JANUARY

Beyond the Limits of the Sky 279

A YEAR AND A HALF LATER

The Miracle Maker 291

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
difrent
!" as if she were hurling a challenge with all her might beyond the limits of the sky.

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