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

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Table of Contents

Read an Excerpt

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 thatshe 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 sentMe. 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.
"Have a seat," Olivia says to me after I shake their hands. I
realize 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. Navajo 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 evry month," 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 easygoing, 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 caseworker. "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 important and mysterious business. It's easy to fall into this
secret silliness 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 eyedrops 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 "Diagnosis: 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?"
"I'll try."
"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 notices 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 mute. 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're bound to hear
this 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?"
"No."
"Do you want to join any organiz —"
"No."
"Do you want —"
"No."
"— a job?"
"No."
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?"
"Iz fun."
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 know my student is eagerly
waiting to show me his next chapter.
"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, greathearted 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-oh," 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 on a bus. 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 with the full dedication that Beth has . . .
She tilts her head back, as if waiting for me to chicken out.
I hold her look, calculating wildly about 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."
"Oh, good!"
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 meshuggah."
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 our 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 to the
doctor with 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 sitting up, 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 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 Beth's
room, seeing things they've never seen: babies with oxygen tubes,
babies with IVs, the hollow faces of bald children, weeping parents.
Then they reach Beth's 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,
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.

Copyright © 2002 by Rachel Simon. Reprinted by permission of Houghton
Mifflin Company.