Riding the Bus With My Sister: A True Life Journey (24 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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Jack's run curlicues through a housing development on the periphery of the city, home to a substantial portion of the Indian and Southeast Asian communities. The bus bustles with colors beyond even Beth's visual vocabulary—mint, mango, emerald, periwinkle, ruby shot through with gold—and with conversations in languages from all over the globe.

Against this lively backdrop, Beth tells Jack about the toxic incident we just encountered. "They were gonna use a bad
word,
" she says.

"I think it's really good you spoke up," I say. "Most people wouldn't."

"Beth's not like most people," Jack says, his short fingers gesturing. "Like John Wayne says in
True Grit:
'She reminds me of me.' Beth and me, we're just independent-minded. If you think you should speak up, you do it."

"Yeah," Beth says. "You should say what you believe."

"We mingle with the crowd," Jack says, "but we also stand back from the crowd. We do what we want when we want, and we don't say, 'Do you think I should do this?'"

"Thaz right," Beth says. "They didn't think I should say that, but I don't
care.
"

"Independence is a good thing. If people don't like you the way you are, you just go, Tough on them. I'm me, and Beth's Beth. After they made us, they threw the molds away."

Beth sits up tall.

"Know how I learned about being independent-minded?" he says. "My lessons started when I was six years old. That's when I started working."

"At
six
?" Beth says. "Why'd you do that?"

We're stopped at a curve in the development, a major hub on this run, I see, as a score of passengers parades off in their silks and crepes and jeans, and a garden of new finery breezes on. As Jack's expressive hands flit from fare box to transfer pad to fare box, he responds to Beth's question. "Both my parents died when I was still a baby," he says, "and I didn't have no siblings. So I went to live with my grandmother. All she got was Social Security, so when I had the opportunity to go with this Greek guy on his oil truck when I was a kid, I went, and then come summertime, he'd switch to a fruit and vegetable truck, and I helped with that, too. I worked with him every day after school, and then came home at night and helped my grandmother out.

"That's how I learned independence. I learned how to get along with everyone we met off his trucks, and there were all nationalities, and I learned to go among them all. No one could tell me I shouldn't talk to Thais or whatever. I listened to
myself,
and since I wanted to get along with them, I just figured out their ways. Clint Eastwood says in
Heartbreak Ridge,
'Adapt. Overcome.' I wanted to adapt, so I did. I watched my grandmother cook, too, so I learned to cook all kinds of food. No one could tell me boys didn't cook—by the time I was eleven years old, I could cook a four-course meal. Now I can talk to anyone, and I can cook anything."

"Like what?" Beth asks.

"Everybody loves my chicken pot pie, red beet eggs, and chocolate mayonnaise cake, even though they're Pennsylvania Dutch foods and my friends aren't all Pennsylvania Dutch. That's because no matter how many differences there are among people," Jack says with a smile, "you
know
we all like to eat."

Jack's Chicken Pot Pie

"This comes out like my bus run, a big melting pot where everybody's mixing together. It's not like frozen dinner pot pies—it's a thick, gooey stew, with the dough mixed right in.

"I use lard, but it's okay to substitute shortening. But don't forget the yellow food coloring. It gives the chicken a golden yellow color, and that's what makes it really special."

FOR THE CHICKEN

½ split chicken breast

1 chicken leg

1 medium rib celery, diced

1 medium onion, peeled and halved

1 large potato, peeled and cut in half crosswise, then each half quartered lengthwise to make 8 pieces

¾ teaspoon salt

¼ teaspoon pepper

5 cups water

¾ teaspoon yellow food coloring

"Place all these ingredients in a six- to eight-quart pot. Bring right up to a boil, then reduce heat to medium. Cover and simmer for one hour or until the chicken's thoroughly cooked. Then take the chicken from the pot, set it aside until it cools enough to handle, and scoop those onions out and throw them away."

FOR THE DOUGH

2 cups flour

¾ teaspoon baking powder

¼ teaspoon salt

1 tablespoon + 2 teaspoons lard or shortening

About ½ cup cold water

"Mix the dry ingredients in a bowl and cut in the shortening, like making a pie crust. Then add the water—just enough to form a ball of dough—and knead it a bit and let it rest for five minutes. Roll the dough out on a lightly floured board till you've got a square about twelve inches on each side, and about an eighth of an inch thick. Then cut it with a knife or a pizza cutter into a bunch of two-inch squares.

"Strip off the meat from the chicken, and toss the skin and bones. Set the meat back in the pot. Bring to a boil and add the dough one square at a time, stirring well after each addition. (The dough'll look like dumplings, not noodles.) Then turn down the heat to medium and keep cooking for about thirty minutes—but stir it real frequently. If it all gets too thick or the dough begins to stick, add more water, a quarter cup at a time. You know it's all done when the squares are cooked right through."

Enough for four hungry eaters, or six, if you serve with salad, rolls, and dessert

The humidity outside our air-conditioned shuttle engulfs the city like a steaming broth. Families lie limply in porch shade, their eyes glazed over, their skin sticking to lawn chairs like raw dough. Sidewalks simmer the feet of panting dogs. Wilted riders in saris and embroidered shoes press kerchiefs to their damp cheeks as they escape into the relief of the bus.

At a long red light, Jack says to Beth, "You don't know it, but you helped those people."

"They sure didn't act like it."

"Sometimes we can get through to people, and we don't even know it."

"I don't think I got through. They weren't listening to me."

"You never know. Let me tell you something that happened to me once: A woman got on my bus about six one morning. She said, 'Jack, they're following me.' I said, 'Who?' She said, 'I don't know.' I said, 'Can I ask you a question? Are you on any drugs?' 'No.' 'You drink a lot?' 'Yeah.' I said, 'Now I know why people are following you. You were drinking last night, weren't you?' 'Yeah, till four this morning.' 'I can't tell you what to do,' I told her, 'but you need help, if this happens a lot.' She said, 'I don't know where to get help.'

"Well, I'd taken this class to become a community service counselor. They tell you what to say if someone's in trouble, and then they give you this book that lists all the organizations that can help. I'd looked through that book—I call it the 'Help Anyone, Anytime Book'—so I knew right off what to do. I said, 'I'll tell you where to go, if you promise to get help.' And we were right there, so I just pulled the bus over and said, 'Go into this here hospital, and say you want to talk to someone in their detox program.' And she got up and went inside.

"A week later, I heard she was still there. A year later, she's still clean. I saw her one time on the bus, and she thanked me. So you never know when you can get through."

"That was a really nice thing you did," I say.

"I like helping people, but I feel like John Wayne—he's one of my heroes. He'll help everybody, but when it comes to him being in some predicament, he'll go it alone. That's how I feel. Helping people makes me feel good. I just don't want anybody helping me."

Beth doesn't say, "Yup, thaz the way I am." She says, "I'm cold. Will you turn the air conditioner down?" But I detect approval in her face.

To Beth, every day is Independence Day. This was not true for the first half of her life, and for the next quarter it was more of a rebel war, with its own versions of boycotts (particularly at meals), Boston Tea Parties (I shudder to remember her efforts to overturn the order in her classroom), and a one-woman Minuteman regiment. Since she has lived on her own, though, each day her actions declare anew that all men are created equal, and have the inalienable right to life, liberty, and, especially, the pursuit of happiness. I love this about her, and, now that I have come to see her as proudly bearing the torch of self-determination, I regard her as courageous, a social pioneer. However, sometimes Beth's assertion of independence can be at odds with what I see, and others do too, as her best interests, and I find this conflict to be as much of a challenge for me as her sometimes obstreperous ways on the bus.

This realization recurs at odd moments. One evening recently, Vera drove us to the supermarket.

"How much of your money do you want?" she asked Beth.

"Fifty dollas."

"You know you'll have to come back here pretty soon if you don't buy more now."

"I don't
care.
I'll get here on the bus."

After riding all day, I just wanted to be stationary. So as Beth hustled across the lot and Vera popped a tape of salsa music into her cassette player, we got to talking.

I'd finally pieced together that Vera, whom the drivers call Beth's aide, and who after a recent promotion became officially known as a team leader, works for a provider agency that oversees the work and home lives of people with special needs. Beth's first job out on her own was in their sheltered workshop, a section in the agency's headquarters, where, in a supervised production line, people with developmental disabilities perform low-tech tasks for local businesses, such as folding boxes or putting washers in plastic bags. When she wanted to move on from that, the agency trained her to get a job in the community. They also oversaw the group homes where Beth lived and now run the support program that sends Vera to monitor people who live independently.

"I used to go in there with her," Vera said, nodding toward the grocery store. "But I'd say, 'You need vegetables,' and she'd just walk by them, so to keep from getting upset I wait outside now. She'll take the bus here, but since you can carry only so much back on the bus, sometimes I drive her. Not that it encourages her to buy healthier. Though she did learn to cook real meals. I taught her myself."

I was surprised; I've never seen Beth do more than boil spaghetti. "When?"

"Oh, that was years ago, when I worked in her group home." She explained that they had two types of group homes then, one with twenty-four-hour care for people with severe and multiple disabilities, and the type Beth was in, with eight-hour care, for people who needed just some help. It was in that semi-independent program where Vera taught Beth cooking, "and fire safety, dealing with strangers, all that." Then six years ago there was a big push toward independence and the agency folded the semis. Beth and most of the others there moved into their own places. "She's happier this way, but I worry about newcomers. They don't have any intermediate step—it's either twenty-four-hour care or you're in your own place. It's like going from grade school to college overnight."

When the semis closed, Vera shifted to the Independent Living Program that oversees Beth now. Each individual can choose to see her for two to thirty hours a week. For Beth, the recommendation is seven. But she wants only three, so Vera obliges. "That's the way it works."

"Do you like it? Working with her?"

Well, she said, the job pays poorly; after thirteen years, she earns ten dollars an hour, and some other places pay less. "But I like Beth. She's got spunk. And she's a good person, too. If there's an emergency, no matter what time of night, I'd run over. This guy in her building was getting fresh with her in the elevator. How many times have I talked to him? 'Don't try that with her again!' Or people complain about her running around on her own. I stick up for her, I say, 'She has a brother who's a lawyer, people who care for her. She's not a nobody.'"

We heard the supermarket door open and Beth burst through the exit. "There's Miss Quick," Vera said. "Third song isn't even over on this tape. I don't know how she does it."

Her cart laden with Diet Pepsis and ketchup and macaroni, Beth charged across the lot.

"I'm supposed to teach her to be as independent as possible," Vera said. "That's not hard because she's a very smart lady and the most independent person I know."

She flicked off her cassette player. Yes, I saw, Vera shares my respect for my sister, but she also appreciates how difficult it is to balance her concern for Beth's well-being with Beth's unquenchable desire for freedom.

"Of course, independence," Jack says, as he munches on French fries during his lunch break, his back to the driver's side window, "can have its drawbacks."

"No," Beth says. I am spooning up fruit salad; beside me, Beth is nibbling on a slice of pizza. The otherwise empty bus is idling in the parking lot of a shopping center where we've just bought our food.

"Sure," Jack says. "I'll tell you, I love them lone cowboy movies, but sometimes independence makes loneliness hell. I've been single for twenty-two years, since my divorce. Once women start thinking they can possess me, then goodbye. I'm too independent. I'm always the oddball at parties, alone when people are in couples. That's no fun."

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