Riding the Bus With My Sister: A True Life Journey (15 page)

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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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I guess she puts together a plan then. She will simply ambush me at the end of my school day. It's easy—she gets home before I do, and we
have a park bench on the lawn looking out to the lake. She'll just sing to herself, sit there with Ringo, and wait for my school bus.

The first time, I hear snickering in the seats behind me as the bus pulls up. Snickering about her, I know. So when I get off and she's standing at the bottom holding Ringo, grinning ecstatically at my arrival, I usher her into the house fast, before they laugh any more.

The next time, the snickering is bolder. I run off the bus, telling her, "Please wait inside.
"

But she does not wait inside the next day, or the next. I stop saying "please" and just blow past her to get in quickly.

Then one spring day, she can't stand it anymore. When she gets home, she finds her favorite water pistols. She slips on a pair of summer shorts and strips down to her undershirt. As my bus pulls up to our house, there she is at the curb in seminaked cowgirl glory, shooting off water double-handed, beaming up at my window.

The bus erupts. I seize my books and bolt down the aisle, my head down. The laughter slams against my ears. I have never heard anything so loud. I have never felt such humiliation.

"
Get inside!" I blurt out in tears as I emerge from the bus.

And they laugh and laugh. And don't stop when we get inside and slam the door. Or when I run up to my room. I can hear it roll on and on until I blast Led Zeppelin. Until I beat my pillow in despair.

Mom comes home late that night. She was out on a date. Not with a Clark Kent who wears a hat and shakes our hands, but with one of the surly types she sees now. They wear carpenter's belts or drive cement trucks, and they never shake hands. They don't bother to learn our names.

She tosses her pocketbook on her bureau. I tell her about that afternoon, and I can barely keep from crying. "So please," I beg her when I finish, "tell Beth not to come meet me at the bus! Tell her to wait for me inside!
"

Mom pauses a minute. Then she says, "I will not tell her that. She has every right to wait for you on the lawn
."

"
But it was terrible!" I say. "I was so ashamed!
"

Her face gets hard, as it does more and more these days. "You
shouldn't be ashamed.
They
should be ashamed. I will not hide your sister from the world.
"

I storm out, furious at life. It's not fair! It's not fair that, on top of being a teenager, which is bad enough as it is, I have this extra worry! It's not fair that I know—and Laura and Max know—that we can never think of a future that doesn't include Beth!

It could have happened to any one of you.

When you're older, save money for her, so when we're gone you can take care of her.

We don't believe in the back room. She'll be in plain sight, as one of the family.

Never put her in an institution. Ever ever ever. Make room for her in your own house.

That night, I sob at the injustice of it all. I know it's true, and I know Mom's right. But I hate it all so much that I decide I'll walk home from school from now on. This clears my mind but not my temper and doesn't lighten my conscience at all.

Lunch with Jesse
 

10:50
A.M.
"I've been thinking about love," I say to Beth, as she sails in her bumblebee yellow T-shirt toward Jesse's apartment building, her eyes shaded by sunglasses with psychedelic frames.

"You have? You got a
boyfriend
?"

"No, no."

"Oh," she says, disappointed.

"I've been thinking about
you
and love. Do you know what love is?"

"What? You talk
funny.
You don't make no
sense.
"

"I mean, how would you define the word 'love'?"

"I don't know."

"No ideas at all?"

"I guess iz someone you
trust
"

"How do you do that? How do you love?"

"Why you need to ask? You got a
problem?
I don't know. I just do. It just happens. Ask Jesse. Maybe he knows. He'll know. He can
talk.
People think he's quiet, but he can talk, boy, can he talk, 'specially when we're alone. He'll tell you and then you'll know what to
do.
"

"I'm not curious for myself," I say, a bit too tartly. Then, softening my tone: "Let me put it another way. What do you love about Jesse?"

"I don't
kno-oh.
Lots of things. Kissing him, I guess. That he's nice to me."

"That's it?" I say.

"You ask too many questions."

"I thought you said I could ask all the questions I wanted."

"Not
stupid
ones."

"Well, you said there were lots of things you loved about Jesse. So, like, what?"

"I don't
know,
" she says, and, tsking away my interrogation, she breezes off the sidewalk toward his high-rise, her tiny sandaled feet splayed like a bird's.

"My sister has a boyfriend." When this information ends up making its way into conversation, it is usually in Conversation Number Two about Beth; Conversation Number One having foiled my friends' hopes of learning Beth's "mental age," a sequel sometimes arises weeks or months later, when I happen to mention her boyfriend. Often, my friends respond with a two-part smile. It's as if they initially think it's just so
cute,
but within seconds realize with a shock that Beth has womanly longings. "How did they, uh, meet?"

"She moved to a group home at twenty-eight, and he was living in a group home nearby."

"Oh, so he's retarded, too. But how retarded?"

Now it's my turn to sputter, as I've never seen the point in knowing
Beth's
exact diagnosis. Throughout my life, Beth has been, after all, Beth, just as Laura has been Laura, and Max has been Max. Not until this year on the buses did I cross paths with such information, when I peeked at Olivia's papers during Beth's Plan of Care meeting and learned that Beth's disability was classified as "mild." No doubt, my approach has complicated the task of translating my sister's life for my friends, but that has seemed insufficient reason for me to poke around in her medical records. So when Jesse came on the scene, I thought about his diagnosis no more than I'd ever thought about Beth's IQ, or, for that matter, my friends' IQs. It was none of my business; Jesse just is who he is.

I say, "You mean, what's he like?"

"Right," they say.

So I tell them about Jesse's Georgia accent, and inability to read, and how, beyond the walls of his apartment, he keeps to himself. At first, I say, I thought this reticence was run-of-the-mill shyness, but soon after I joined Beth on the buses, she suggested that it stemmed from his having grown up as an African-American in an impoverished rural town awash in prejudice, and from feeling self-conscious about his blind left eye. He lost the vision in it at thirteen, he once told me, when he was playing alone at an abandoned construction site and stepped on a pipe that swung up and slammed into his face. Although he had the wherewithal to stumble to a hospital (like Beth, Jesse is nothing if not resourceful), his sight was so damaged that he could do no more than sit, forlorn, beside the entrance. The wrong entrance, it turned out, because the hospital was a few buildings away, and he was in too much pain to judge. "A lady came out and tole me to move," he explained to me. "I tole her I can't move. She went in and called the cops, and the cops came and said I couldn't sit there, I was lottering. I told them some metal hit my eye, and I'm blind. So one of them took me by the hand, and led me to the hospital." I don't know if Jesse's tale is a story of racism or heartlessness, and he is too grateful for the compassion that ended it, and too polite, it seems, to speculate. All I know is that after weeks of agonizing operations, he learned to keep his smiles and words at home, where he and his big family would press the keys on the jukebox they kept in their living room, watch the forty-fives slap down on the platter, and dance along to Elvis, the Jackson 5, the Coasters, and the Drifters, while one brother would use library books to teach Jesse karate.

I tell my friends how he now spends his days: on endless bike rides and occasional odd jobs. He does lawn work for an old lady, couriers messages for one of his former aides, and helps a police officer who's asked him to bike up and down a misdemeanor magnet of a park path and radio in suspicious behavior. Every night he sets that yabbering police radio on top of his TV as if it were a golden statue on a museum pedestal. Beth hates having the static behind their talk, so he shuts it off during the four or five times a week when they get together. Then, as daylight spills through his windows, or as darkness gathers outside hers, they'll watch TV and talk. That is, if they're not, as Beth gigglingly puts it, "having fun," though these visits rarely culminate in their spending the night together. Both live in subsidized housing with no-overnight-guests policies, and residents continually glower at both entrances, quick to speak out at a violation of the rules.

Seldom do Beth and Jesse rendezvous in public, either, because in this city, a black man walking beside a white woman still seems to trigger hostility. When Beth and Jesse first took a shine to each other, tenants in neighboring group homes muttered epithets, and some bus riders who observed him talking to Beth on a corner would sneer at her, "Do your parents know about this?" "My parents don't
care,
" she'd reply truthfully. Now, she overhears it in the drivers' room, from those who don't like her: "People should stick with their own kind."

I tell my friends I want to know what "their own kind" means. People with visual impairments? People who favor nomadic existences? People whom other people would like to label by their "mental age"? Okay, so she's a tiny, sassy, roly-poly, Crayola-bright, nonpracticing Jewish chatterbox, and he's a five-feet-four, bashful, sinewy, Lycra-clad, nonpracticing Baptist loner. Yet she makes sure he's safer by buying him a bike helmet. He makes sure she's prettier by shaving the hair that grows on her face. They scratch each other's backs, and they accept each other's moles. They argue over her queen bee ways or his reticence; they make up. He hangs his bike awards in her apartment. She keeps the redial button on her phone set to call him. They agree that they both want their own space and should remain unmarried, visiting in mornings or evenings, remaining alone with their dreams. I am still longing to meet
my
own kind, whatever that is, and I wonder who among these critics has met theirs.

That's often how I wrap up Conversation Number Two. My friends sit back, satisfied that they now know it all. They don't guess that there is also a Conversation Number Three.

A barefoot Jesse swings open his apartment door. He's wearing jeans and a white tunic, and knotted about his waist is a black belt.

"Hi, Jess-eee," Beth says, and in that run-on sentence way she gets when she's angry or excited, she adds, "Iz hot out, we're gonna have lunch, Rachel sez she'll pay if we go out, we can go anywhere we want, it won't be anything, it'll go fast, so please do it, you gonna do it? Please come, all right? Okay? All right?"

He eyes us, considering. Despite his social wariness, he's finally said he's willing to get together with me during one of Beth's bus days. So even though this get-to-know-my-sister undertaking requires an adherence to her routine (in this case, downing Ring-Dings on Jesse's sofa and charging back to the bus in ten minutes), I want to express my gratitude for his having drawn on some inner bravery. I also want to show my appreciation for his having found the time to admit me into their private territory. Besides, enough with apples stuffed in my pockets; I want to eat a decent meal.

"So you gonna do it?" she continues. "It won't be nothing, it'll be
fun,
please?"

He hesitates in his customary way, then turns to me. "Nice to see you again," he says.

I gesture toward his Asian-looking tunic and say, "Hey, you got all dressed up for us, Jesse," and as he nods, pleased that I've noticed, I reach out to shake his hand.

Handshaking is how we've always greeted each other, since he is even less fond of hugs than Beth. Our palms press together, as, behind him, the surfer bass line of the
Batman
theme song pulses on the television, and the police radio crows right along.

"So will you?" Beth repeats. "It'll be all right, no one'll be mean, it'll be okay."

"I ... I'll think about it for a minute," he says, and he ushers us through his front door.

Without a pause, he and Beth enact a choreography as comfortable as any I've seen among couples. Beth produces a can of diet Pepsi from her pocket and lays it in his hand, then buzzes into his kitchen, waxing on about some bus intrigue, combing through his cabinet, and homing in on a pomegranate red glass. Jesse saunters behind, providing an ear for her bulletin, pouring her soda, closing the cabinet doors. She hands him a coupon a driver gave her for a free pizza, he turns over his latest bike racing certificate—Honorable Mention—which she will tack on her wall tonight. She opens his window, he shuts off the police radio and TV. She tightens his belt, he brushes lint off her shirt. It is the kind of dance I once fluidly executed with Sam, but not, I think, looking away, with anyone since.

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