Riding the Bus With My Sister: A True Life Journey (29 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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Jacob stays with us all through the surgery and far into the night, driving us back to Beth's apartment, picking up dinner, keeping us company as Beth rests, eyes closed, before her TV. The next day, Rodolpho pays a visit. Rick arrives bearing a chocolate milk shake (Beth's request) and a bouquet. Betty, the dispatcher, sends flowers from the entire bus company. The day after, when I finally have to go home, Jacob invites Beth over to his house, so he and Carol can continue giving her the treatment for one just-in-case day longer.

During these two days, I learn, on the phone with Olivia, that this is how it's supposed to work. The system that supports independent living relies on it: the cultivation of friends in the community, who will, out of kindness and generosity, help out. Fortunately—amazingly—Beth has such friends, especially in Jacob. But it seems like a lot to ask, in this selfish, materialistic, inflexible world of ours, where so many of us are rocketing single-mindedly toward some personal vision of happiness.

I'm thinking about this rosy expectation, as Beth lies down on Jacob's sofa, and I explain to him and Carol how to take care of her eyes, then wave goodbye, and start my drive through the city toward home. What happened with the other woman who was waiting for surgery in the hospital? Did she have someone who looked out for her? Did someone bring her a milk shake?

I glance at the seat beside me. Beth asked me to keep some of her flowers. There were too many for her taste; she wasn't accustomed to having them around. So I'd taken the bouquet from Rick. Now the purple petals are my passengers, curling up like question marks in the sun.

Releasing the Rebel
 

"
Okay," Dad says to Beth. "What size are you?
"

"
I don't know," she says.

Dad and Beth and I are standing before the women's fitting room in a department store. In an effort to welcome Beth into her new life with him—which means, among other things, getting her more clothes than will fit in one suitcase—he'd grabbed slacks and shirts and thrown them over his arms as we'd walked through the store.

"
You must have some idea," he says to her, thumbing through the tags. "Don't you remember your neck size? Your arm length?
"

"
I don't think women's clothes work that way," I say.

He looks at me. "How
do
they work?
"

Dad has never gone clothes shopping with us, so for him the tags might as well be written in Sanskrit. I am seventeen, and the last time I was in a department store with someone who could explain things—my mother—was at least five years ago, before she began her free fall. Since then I've worn bell-bottoms and T-shirts from the army and navy store, except for when friends and I ventured onto this foreign terrain to do fake shopping, trying on prom dresses and pretending to be movie stars. But we'd paid no attention to tags. "Beats me," I say.

We look around. Customers buzz by, but no salespeople. Dad rings the bell on the counter. "They'll know how to look at you and figure it out," he says, tapping his foot.

Beth shifts her weight. I feel stupid and useless. Dad rings the bell again.

"
Hello?" he calls into the bowels of the fitting room. "Can we get some help?
"

He turns back to us. Since we've moved in, he still laughs, but most of the time he looks torn up. "Go back there," he says to me, "and see if anyone's there who can help.
"

I start to walk, and then, perhaps sensing in my slow steps my vast
lack of knowledge about shopping, or my unease about speaking to adult strangers, he says, "Shit," and takes Beth's hand and marches her into the fitting room. He moves fast, as if he's committing a crime.

Later, over pizza in the mall, when Beth gets up for napkins, I say to Dad, "I can't believe you went into the women's fitting room.
"

"
She needs clothes," he says. "What else are you going to do?
"

We try to settle into living with Dad, in the new townhouse he has bought in Pennsylvania. But it is hard because we are all so bitter about our mother.

Actually, the rest of us kids are. Once Beth gets new clothes and stops sleeping all the time and her hair grows back, she seems like Beth again. She draws sunny pictures with smiling houses. She takes over the dining room with her puzzles. She shadows Dad the way she shadowed Mom. She hangs out with Ringo in the parking lot that all the houses in our development share.

Then the summer she turns sixteen, she makes a friend, the best friend she has ever had. The friend's name is Juanita. We are pleased that Beth has a pal, but we are also worried: Juanita is four years old. She lives a few houses away, and every day she and Beth play together in the parking lot. They get silly and bounce balls and run around with Ringo.

Beth is beside herself with joy. But sometime, we whisper to each other with trepidation, Juanita will grow older, and she will look at Beth through different eyes. We brace ourselves for that moment.

Late that summer, I am in the bedroom I share with Beth when I hear shouting in the parking lot. I peek out the window. Juanita's older brother, who's seven or eight, is circling Beth on his bike as he shrieks at her, calling her stupid, a baby, a freak. Juanita is skipping along at his side, a savage smile on her face.

Beth stands horrified, her face burning red. Juanita dances about, hurling contempt. It's a spectacle of brutality, and Beth seems hopelessly tied to the stake.

Then they peel off, howling. Beth lumbers inside. She sits down on her bed and stares.

I look at her, tongue-tied. Finally I say, "Um, want to go out to a movie or something?
"

"
No." She rises and clumps down to the living room, where she sits in silence all day.

That fall is when it all comes out: the rage over our mother, over Juanita, over being in a world that hates her. With mixed feelings, we realize that a rebel is suddenly emerging.

Disdainfully, she throws aside her picture books. She teases Max until he starts yelling, then acts innocent when Dad comes to investigate. She invents her wicked "aaah-hah" laugh for when we drop things or trip. She consumes hot dogs and chocolate milk all the time and won't touch the fruit and vegetables that Dad begs her to eat. She spills our secrets. She tells us lies.

Dad calls her on all this, and she rolls her eyes, half closing them at the same time, as if she can't decide whether to sulk or fall asleep. He asks why she's lying, and she answers, "I don't
know."

My feelings toward her become as complex as her emerging personality. I love her laugh, I cherish her affection for teenage music idols, I relish her originality (she collects and individually wraps coupons to give us for birthdays) and her pop culture expertise (in fact, I keep up with pop culture through her). I get a kick out of how she latches onto the word "cool" to indicate her highest praise. But at the same time I'm aware of her escalating self-centeredness and manipulativeness. Disheartened, I confide to friends that my sister is becoming a bitch.

Dad, irritated but hoping it's a phase, enrolls Beth in special education classes. But Beth acts up in school, too. Impertinent and pugnacious, she ignores Mr. Laredo's instructions, insists on calling him Mr. Ray-do, goads him, keeps her distance from other classmates except when she's provoking them, and does everything she can to incite glares or pouts from everyone.

When Dad goes to a parent-teacher conference, a beleaguered Mr. Laredo, sitting across the desk, unloads "I'm almost at the end of my rope." Dad lets out a sigh. "I love my daughter," he says, "but I know just how you feel.
"

After a year, Dad takes Beth out of school. He tells us it's the best thing, hiding his feelings of defeat.

But what then? Upholding the family policy, he declares he will not
put her in anything that smacks, even remotely, of an institution, which he feels includes group homes as well. Instead, he decides he will bring her to work at the office of the mail correspondence school where he's been employed for years and which he now runs.

Every day they drive there and back. It's seventy-five miles from our house, a long, dull ride of almost two hours. He hasn't minded previously because he's spent the time listening to classical music on the radio. But now Beth babbles endlessly over the music. She tries to change the station, and when he says no, she gripes. Her voice, loud and centered on the Top Ten or office gossip, goes on and on and on.

He struggles to tolerate it, but after an hour or so it gets to him, and sometimes he snaps, "Stop talking, I'm trying to think!" Then she shushes up. But her restraint lasts only a moment before her chatter revs up again.

Happily, the owner of Dad's correspondence school accepts Beth's presence, so Dad sets her up with simple clerical jobs. She gets a little office area, where she plugs in her radio and learns the routine: these papers into those cubbyholes, alphabetize here, count there. Then she brings certain stacks out to the young man who runs the printing press in a building in the back, others to the salesmen. She sorts and delivers with virtuosity, singing most of the time. She's like a choreographed Motown show in one corner of the office.

But just when we think we've found a place in the world for her, things start to get misfiled.

Dad'll bring home a box she alphabetized—"Will you guys double-check this?"—and at first we'll find a few understandable errors, and Beth will say oops, she'll try harder tomorrow. Only tomorrow there are more mistakes. Soon everything she does must be checked. We agonize: Is it that she can't, or won't? It is true that she sometimes has trouble with communication; once, for instance, she goes out to pick up two slices of pizza for lunch and comes back with two whole pies, because the guy at the counter mistook her "pieces" for "pizzas." Yet as she flubs her official duties more and more, until every task she completes must be redone by others, we suspect that what's going on is that she simply does not want to work.

Eventually, no one at Dad's place will ask her to do anything. So Beth does what we suddenly realize she'd secretly wanted all along: she
spends every day, from the moment Dad parks at dawn until he warms up the car at dusk, hanging out with the printer in the back.

The printer is a very competent worker, a soft-spoken family man who doesn't mind having company while he churns out booklets for the school, but to her, he's everything. She sits at his side, laughing at his jokes, hanging on to every word he says. He's the subject of every sentence she speaks and the antecedent of every "he." She lavishes on him records and personalized mugs and T-shirts. She draws cards for his kids birthdays. We half joke that if we changed our names to his, she might at least give us something besides coupons.

Not just at work does she make sure she gets what she wants. Elsewhere, too, every time you turn around, she's making her will known.

"
Turn here! I want to eat right here" and "I'm watching this and you can't change the channel, nyah nyah" and "I told him to name his new baby after me, and he will, you watch
"

One day on their ride, Dad jokes that she wants to run the show so much that he now has a new name for her: the Sheriff.

She is flattered beyond description. "The Sheriff wants a better song on the radio. The printer likes Donna Summer so now the Sheriff does too and the Sheriff says we have to change the station so I'm gonna change the station now, see, I'm doing it now, see?
"

Dad listens, but an hour later he's wishing he'd kept his mouth shut. Nothing's getting better. In fact, in addition to the printer, she's now taken a shine to a salesman for the school who lives in Queens. Just yesterday, she instigated a fight with Max and when Max predictably blew up, she took off into the frigid winter weather, completely under-dressed. By the time Max ran to get Dad and they threw open the front door to look for her, she was long gone. But Dad spent so much time with her every day that he figured out that Beth might head to the far end of town, to where they merged onto the highway every morning, so she could walk along the interstate from Pennsylvania, across New Jersey, to Queens. A place she'd never been, but which she understood is on the other side of New Jersey—however far away that might turn out to be. He aimed his car toward the highway.

There she was, on the local road near the highway, about three miles
from the house. Just as he'd suspected, she was moving fast. He pulled up beside her. "Get in," he said.

Now in the car with Dad again, Beth lunges for the radio. "The Sheriff says no more of that dumb music you like. The Sheriff wants the good stuff.
"

Dad tries to keep his laugh alive, but she is shattering his peace of mind.

But sometimes on their rides, Beth isn't demanding or maddening. Sometimes she speaks, in her own way, about the experience with our mother. She'll talk about the lights of Las Vegas and how she never wants to see a gun again. She'll talk about the bad man's wild temper, and how he threw a phone book at Mom's head, and how scared she was waiting at the airport for Dad. She'll shudder.

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