Riding the Bus With My Sister: A True Life Journey (34 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

For a while, it seems that Dad has it figured out. He discovers something called a sheltered workshop, run by a local social service agency.

"
There's more to life than soap operas," he tells her. "I want you to try this.
"

Every day, he drives her there, and though she is shy at first, she soon gets the hang of it. When she brings home her first check, she calls us all in delight.

"
Maybe," I suggest to Laura and Max, "we're out of the woods at last.
"

But the feelings of glory fizzle as status reports come in from our father.

After a brief respite when she begins her job, she starts lying more and more. She routinely tells Dad that she did not lose the remote control, eat the cake, break the toilet—someone else did, though no one else but Dad and our stepmother live in the house. She pretends to be doing her chores, but really messes things up and hides the evidence, until eventually our father says, Please, don't bother again. She helps herself to cash from our stepmother's wallet. Okay, who took it, Beth? "I don't
kno-oh,"
she says.

At work she meets Ron, who uses a wheelchair and lives a few miles away. She sneaks out to see him, walking along curved, shoulderless roads, then lies to Dad about where she's been.

She treats other people's things as worthless. Dropping the dry cleaning you asked her to hold, dropping the camera you gave her minutes ago as a present, leaving her radio in plain view in your parked car as she says, "If they steal it, they'll only break a window.
"

The sheltered workshop calls Dad. Beth is a discipline problem, they tell him. She keeps trying to get away with little stunts and doesn't listen to supervisors. She tries to incite others to insubordination.

"
It's one thing after another" Dad tells us. "Each one adding to the feeling of water dripping on your head—constant, constant, constant—and it isn't going to end
"

Increasingly, too, a smirk accompanies her misbehavior. As if she thinks it's charming to be bad, and she's certain we think her too incompetent to hold her responsible for her actions.

Or, I think to myself, it's as if she knew many holidays ago that we knocked on doors to collect for "charity" and decided at last that she'd exploit her disability, too.

"
I feel so guilty," Laura says to Max.

"
I feel so trapped," Max says to me.

"
She's a dead weight," I say, shocking us all.

Although it is true that we care about our sister's well-being, secretly, slowly, our words show us that we care a lot more about our own. We know that if nothing changes, someday she will end up living with one of us. We are just getting established financially and professionally and hoping to find romances that will last. Adulthood is hard enough as it is.

"
Did I say that?" I gasp in a fever of shame over the phone. I have become, it is clear, a bad sister.

One winter afternoon Dad drives the several hours to see me. Never before has he come without our stepmother or even Beth. Coat still on, he sits down on a chair, sighing deeply. Then he pulls out a piece of paper. It is a list of every weekend for the next year.

Quietly, he says, "I came to ask you to share in caring for Beth. I am asking you to bring her to your place here for one weekend a month. If you do this, and Laura, and Max, then we'll have her the rest of the time, and I'll feel a little more sane.
"

I take the paper from his hand and stare at it.

"
Please," he says. "I'm begging you.
"

I sit there in silence. It is very little, compared to his burden: one weekend a month. I glance up at him. He is looking at me with desperation. I open my mouth to say the right thing, but instead I burst into tears. "I can't," I say. "I'm sorry. I just can't.
"

In a daze of disappointment, he says, "Max and Laura said no, too. And Beth refuses to live with your mother." Then he stands, unfolding himself as if every joint is painful. And as I watch him I know I will always be haunted by this moment, when I let my father—and my sister—down so completely. I sit in a sweat of self-hatred as I watch him shuffle toward the door.

Finally, feeling utterly crushed, he calls a social service agency.

"
The waiting list for group homes is long" the first person he speaks with says. "Several years at least.
"

"
I can't wait several years" he says.

The second person he tries tells him the same thing, and adds, "You don't have any choice.
"

"
This is my daughter I'm talking about!" he shouts.

At his wit's end, he writes a letter to the governor.

Within days, he gets a call. There's a space open in a group home. Would Beth like to move in?

Far across town from Dad's house, I sit with Beth on her new bed in her new group home. It's in a low-rise apartment complex across a river, far enough from downtown that you can barely see the skyline, but close enough that shops and pedestrians still freckle the streets.

We're in that twin month, both of us twenty-eight. She slouches, forlorn.

"
You'll get used to it" I say. "Look. There's a nice view from the window.
"

"
Iz not nice. Iz a parking lot
"

"
Well. Still. It's ... a window.
"

I feel bad for her, even though I know it was her rotten behavior that caused this turn of events. I feel heartsick that Dad tried so hard with so little success, finally moving her here a month ago and driving home without her. And though I control my expression so my feelings don't show, I'm profoundly relieved to know that she won't be a burden to me.

But still, who would want to move from a house where you have your own bedroom, bathroom, and TV, to an apartment with three women you don't know, a shared bedroom, bathroom, and TV, scheduled household chores, and your beloved stuffed animal collection confined to a dresser top?

This is the fourth week she has been here, and so far I have come every Saturday.

"
You've seen me more this month than you ever do," she says.

I say, "That's because I know how hard it is to live on your own all of a sudden" Besides, I think, I have a little atoning to do.

A roommate walks in, and Beth lowers her eyes and goes quiet. Her housemates have mental retardation, too, and some of the people in the nearby units, also run by this agency, have additional disabilities as well. I've met a lot of them in the last month. Some say "Thank you" when you hold the door for them, others barge past you with a scowl. Some go outside every morning to thread a long string into the air and lift a kite into the sky, while others lounge about the front steps, grumbling about people with different skin color and smoking Kools. Some settle into the group sofa for an evening of
The Sound of Music
on video, others snatch the remote control as soon as the credits finish to click over to MTV. Some get into bed beneath posters of Miss Piggy, while others fall asleep beneath Dallas Cowboy calendars.

Beth isn't fond of any of them, or even comfortable in their presence. I watch her roommate retrieve something from a drawer while Beth keeps her gaze in her lap, her mouth tight. After the woman leaves the room, Beth says, "She doesn't want me here.
"

I have no idea what to do until my tongue suddenly finds the words that Dad used to utter when he'd come to visit us. "Then let's go out for ice cream," I say.

"
All right," she says with no enthusiasm.

We head out, and as we pass through the dining room, I notice that another housemate is vacuuming the carpet, clearly in an arctic mood. As Beth nears the door, the woman detours over with the machine and runs it "accidentally" over Beth's heels.

"
God!" Beth says, running outside.

"
Oh, God," I echo, running out of optimism.

We pick up the ice cream; Beth has abandoned the chocolate of her childhood for chocolate chip mint. As we lick our cones and get back in the car, I try to find a reason not to take her back right away. I pull over to a miniature golf course. "Hey, let's play a round," I say, trying to think
Be cheerful
and
She'll adjust...
though never being able to eat when you want, or sleep in a room alone, or avoid people who vacuum your feet seems a kind of purgatory.

We stroll onto the course, holding ice cream cones and golf clubs.
The course is designed around a waterfall, with rock cliffs and tumbling streams. "Beautiful, isn't it?" I ask.

"
Mmmm," Beth mutters, not looking.

She whacks away at one ball after another. Some spiral into the water. But some actually stay on the green. A few find their way to the hole. At the eighteenth, she even gets a hole in one.

"
Hurray for the Sheriff!" I say, clapping my hands.

She smiles, but the ball gets swallowed up, and unlike the previous seventeen times, does not return. Her smile fades, and she stares too long at the empty hole.

"
Game's over" I say. "The ball won't be coming back
"

She keeps staring at the hole. "What happens to it now?" she says.

She does adjust, as best she can. At twenty-eight, she learns to ride the bus to and from the sheltered workshop. At twenty-nine, she develops a social life with people in nearby group homes, one of whom is Jesse. By thirty, she has adopted the grammar of this new world.

"
That workshop place iz
stupid.
I know someone who don't
go
anymore.
"

"'
Doesn't,' Beth. You know the right way to say it
."

"
Doesn't. He got a job working at a
grocery
store. But he don't like it there either.
"

I correct her until an acquaintance who's a sociologist tells me, "She's doing this deliberately so she can feel she fits in where she lives.
"

I understand that, but I wish my colleague could explain away the other things that are happening. Beth and I used to discuss family matters, sometimes the local news. But now—as she turns thirty-one, as she realizes she's unhappy at her job and leaves the sheltered workshop, as she begins and leaves jobs busing fast food tables and collecting carts at store parking lots, as she spends long sessions in front of the TV—all she'll talk about is the weather and sitcom stars, or she'll gossip about people I don't know. Our back-and-forth conversations end now, too; if I tell her that I just sold my first book or moved into a house with Sam, she glazes over. If I take her to a movie, she falls asleep. If I take her to a scenic park, "I'm
bawd."
So I sit with her in front of sitcoms, staring at the clock. Either I yawn all the time I'm
around her, or she catches me so off-guard that I'm speechless. "I finally got back at my roommate" she crows to me one afternoon. "I gave her some Ex-Lax and told her it was a chocolate bar and she ate the whole thing and she was sick for three days! Aaah-hah.
"

"
I can't figure out how to talk with her anymore," says Laura.

"
I am so bored around her" says Max.

"
She doesn't want to visit me," says Mom.

"
She doesn't want me to visit her," says Dad. The strain between them has gotten worse. He offers to take her shopping whenever she's willing, but she's rarely willing anymore.

And as the years pass, a dark voice comes to life inside me. It finds fault with everything she does, and with myself for not knowing how to deal with her. Whenever we're together, it erupts without warning like a geyser. I hate it. Oh, how I hate it.

She is thirty-two when we all receive letters that say
I wAnt To live. on my Own.

We call. "That address is downtown, Beth, in a kind of rough neighborhood.
"

"
What if you get broken into?
"

"
Do you know not to let in strangers?
"

"
Fires," we say to one another. Electrical shocks, hunger, mildew, muggings, too much macaroni, too little heat, loneliness, roaches.

Dad says, "I'd much prefer it if you stayed in a group home"

"I'm moving out on my own
"

On her snowy moving day, Jesse and her aides help her haul boxes up in the elevator. She brings her bed from home. The agency gives her other furniture, which she doesn't care for. "We could pawn it," Jesse tells her. "Whuz that?" she asks. He shows her, and they make some money, and she uses it to purchase things more to her liking.
I want NEw things,
she writes me.
I Dont want LEFTovER.

I worry as much as everyone else about how she's doing, but not enough to visit. I am falling downhill in my relationship with Sam, as my fear of closeness increasingly causes resentment on both sides; now, when we lie on our sofa after work, we listen to Sam's records in silence. Knowing I must leave, yet desperately not wanting to, I am in a
private panic most of the time. I rarely think about anything else, even my sister. Besides, whenever I call, her phone just rings and rings. Isn't she ever home?

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