Riding the Bus With My Sister: A True Life Journey (25 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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"Do you..."—I pause—"do you ...
like
being alone? I mean, twenty-two years. That's a
long
time." I feel a pinch in my forehead.

"I like it, sure, but sometimes I want to be with someone—someone as independent as me. I've known only one person like that: a girl in high school. She was the only girl I ever truly loved. But at the time I was living with my aunt and uncle, and they pressured me not to see her. Too young, they said. Then I went in the army and lost track of her. I think about her a lot."

"Why don't you find her?" Beth and I ask at the same moment.

"Every time I go to high school reunions, I look around for her," Jack replies, "but she's never shown up. They say you have one true love in this life, and I believe that."

He gazes out the windshield at the shopping center, and his eyes fill with a distant longing. "Sometimes I wonder if I'd be a different person if my life had gone another way. I had a chance to go to a military academy when my grandmother died, and I would have learned a trade right off the bat, but I wanted to live with my aunt and uncle. And back in those times, you didn't have guys thinking of culinary school. Would I have been more satisfied in another life? Maybe I'd be a chef now, and make my specialties at a four-star restaurant. Maybe
I'd
be one of them cooks I watch on TV. Maybe I'd have that girl as a wife."

He sighs. "I now know that if you have a dream, act on it. If you love someone, hold onto her. Cooking got me lots of friends, and whenever they feel down, I just whip something up and it leaves them happy. So I'm not bitter. But this is what I learned too late: that you need to go for things when you can, because you might never get the chance again."

I try to come up with something to say in response, but I can't think of anything. I look at Beth, who, apparently guessing at my feelings of uselessness, turns her palms up in a gesture of
I don't know what to say, either.
We all sit there a moment, listening to the muffled thrum of the bus engine.

Then Jack clears his throat. "Well, like Walter Huston says in
The Treasure of the Sierra Madre,
'Goin' through some mighty rough country, you'd better have some beans.'" With a small laugh he turns to his side, combs through a bag beside his seat, and produces a black, insulated container. "I was bringing these to a friend today," he says, "but want to help yourself now?"

"No
thanks
" says Beth, who does not stray from her familiar menu.

I generally share Beth's lack of interest in dishes outside my ordinary fare, but with one of the world's most enthusiastic undiscovered chefs sitting before me, his tough-guy face having just softened, however fleetingly, into vulnerability, how can I resist?

"Beans?" I say, walking over.

"Actually,
beets.
Red beet eggs."

I look down at a square Tupperware container of sliced beets and a dozen eggs—fat, plum-colored jewels suspended in a wine red sea. He hands me a plastic fork and napkin, and says, "Dig in."

Jack's Red Beet Eggs

"They're pickled, but you won't taste vinegar, because I balance the ingredients just right, so you get a sweet-sour taste. And I make sure the color goes all the way through."

2 dozen large eggs

4 14-ounce cans sliced red beets

1 quart white vinegar (approximately)

Sugar to taste (about 3 cups)

"First, hard-cook the eggs and run them under cold water real good. Then take a gallon jug, glass is best, and clean it. Then open four cans of sliced red beets, dump all the juice (but not the beets) and about a quart of white vinegar into a medium pot, and add enough sugar to give the liquid a sweet-sour flavor—that's right, right smack between the two. You have to do it by taste, but figure on somewhere around three cups.

"Bring that all to a boil, but don't let it boil too long. Then let it cool down to room temp, because if you add your cooked eggs to hot liquid they'll be so rubbery they'll bounce as high as balls. Then dump one can's worth of beets into the jug, shell the eggs, and layer eight or nine of the eggs on top of the beets. Do that over and over till the eggs are used up. You won't get all the beets in, but you layer them to keep the eggs from floating. Put on a lid and let it soak for about two to three days in the refrigerator. The eggs come out a real deep red-purple. Keep it refrigerated and serve it on a dish that's on ice unless you're eating them right away. And once you've opened the jug, eat the eggs within a week. That won't be hard, because they're just so good."

Enough to feed a party

Last week, Beth finally saw the ophthalmologist. He's one of the few in the city who accept her medical assistance card and who has experience treating people with special needs. Afterward, the doctor called me with the diagnosis: interstitial keratitis. Beth's corneas are, as we'd feared, scratched and numb, to the point where she is barely able to see. The eyedrops Vera helps her put in might be useful, but they will not eliminate the problem, and glasses will not make any difference, either. "This condition is rare in the United States," the doctor said.

"How did she get it?" I asked him.

"I wish I knew."

"How long has she had it?"

"I don't know. Her last eye doctor retired, and I can't get hold of her records."

I sat there on the phone, smoldering about all the things I can't control. It's not just her medical files, or her eyes. There are uterine fibroids, and how she bolted out to a bus right after her ultrasound, leaving her medical caseworker to discuss the results with the doctor. Bad teeth that she brushes too quickly. High cholesterol. Frequent colds.

"She also has a secondary eye condition," the doctor went on. "Her eyelashes are growing into her eyes, and scraping across her corneas. They're making matters even worse. I'd like to do something about this, to reduce the chances of her losing her sight even more: surgery. It's her decision, of course. Though if she wants you along, I hope you'll be able to help her."

What does help mean, I longed to ask, for someone who wants to do everything on her own, even if she does it badly? And who has too much pride to reveal vulnerability? But I stayed silent.

"I'll be in touch," the doctor said, and we hung up. I sat there, paralyzed.

After Jack's lunch is over, new passengers slump aboard, fanning themselves. Jack, who seems to have withdrawn into his own world, pulls out onto the road, and as he drives on, a loner once again, Beth turns to me. "I have a wish," she says.

"What?"

"I wish Jack would meet that lady again. The one that he loved."

"Yeah. He deserves it," I say, moved by her good heart. I want to remark on how thoughtful she can be, but am distracted by the white fog that's spread over her irises, which I now know might worsen without surgery. She has agreed to it, though not to spending two days afterward at home so that the stitches will heal. She wants to get back to the buses the moment the anesthesia wears off.

"I have a wish, too," I say, before I can stop myself.

"What?" she says.

"I wish I had a 'Help Anyone, Anytime Book,' like Jack's."

"Why?"

What I want is a guide to being a good sister, to doing well by Beth, and I would leave it propped on my lap all the time. There would be instructions on how to adjust my guidance to her self-reliance, and how to find the difference between caring and controlling.

But instead I say, "I'd like a book like Jack's so I could find you a new pair of eyes."

"That'd be nice," she says, and, only half joking, she adds, "Can you make them
purple?
"

I'm amused at the question, yet also saddened at how much it reveals about her "adaptive skill areas," and suddenly I wonder what kind of person she would have become had she not been born this way. When I was younger, friends used to ask me this question, though I found it ridiculous as well as rude, since the very thought seemed like a betrayal of some kind. Now I cut my gaze away from Beth, trying to form a picture, but, ensnared in shame and forty years of reality, I am utterly unable to conjure up a parallel Beth. She is the person she is—and, because of that, I am the person I am. Like Jack, I cannot know if I would have been more satisfied in another life, with a sister who wasn't
diff
rent. I do know I would not have been torn by these conflicts. But I also would not have watched two bigots on these streets get put in their place, nor learned the dreams of a John Wayne bus driver, nor eaten a red beet egg. I would not have the almost daily delight of opening a letter from Beth.

You need to go for things when you can,
Jack said,
because you might never have the chance again.

I turn back to Beth. She is still looking at me, awaiting my answer.

"Purple eyes?" I finally say.

"
Yeah
" she replies, as if it's the most reasonable request in the world.

"I'll try my hardest," I say.

Jack's Chocolate Mayonnaise Cake

"My one regret with cooking is that I never watched my grandmother make her rice pudding. So that's lost for good. You know, I wish I'd written down
all
her recipes. But I was lucky with this one. Maybe she already knew you can't wait forever to do something important, and that's why she wrote this one down for me."

FOR THE CAKE

2 cups flour

1 cup sugar

¼ cup unsweetened cocoa powder

2 teaspoons baking soda

1 cup mayonnaise

1 cup water

1 teaspoon vanilla

"Preheat the oven to 350 degrees and lightly grease an eight-inch cake pan. Mix the flour, sugar, cocoa, and baking soda with a spoon. Add mayonnaise, water, and vanilla. Then take a mixer and mix it up like a cake mix and pour it into the pan. Bake for twenty-five to thirty minutes or until a toothpick stuck in the middle comes out clean. Some folks serve this just as it is with no frosting, but you can frost it like I sometimes do or make two cakes and layer them."

FOR THE CHOCOLATE FROSTING

1 8-ounce block cream cheese, softened

2 cups confectioners' sugar

1 cup whipped topping

3 tablespoons unsweetened cocoa powder

"Put all the ingredients in a medium bowl and slowly mix them together. This makes 2 cups of frosting—enough for two layers or one layer with some left over for cookies or cupcakes. It's real tasty this way, but if you use this frosting, keep the cake in the refrigerator. That's because there's the whipped cream in it, and when something's this good, you don't want to let it go bad."

Enough for eight small slices or six large

Nowhere
 

At boarding school, I sit late at night on friends' beanbag chairs, discussing my most feared scenarios about Beth's fate, keeping my listeners awake until they exile me to my room. I have no idea what is happening—there has been no word from Mom, Beth, Grandma, anyone.

I stop combing my hair in the morning.

Perhaps our mother is fitting mittens on Beth's hands. But perhaps something has gone terribly wrong, and now a mittenless Beth is forging through the snow on her own.

I stop sleeping at night.

I lie in the dark, imagining Beth wandering the streets in some strange city, kicking up slush in her sandals, searching through trash cans for food. I imagine her curled up at night, under fire escapes and loose newspapers and a pimp's appraising gaze.

I stop speaking in class.

One week passes
.

One month
.

Two months.

"
She'll be okay," my friends say. "Be positive.
"

I try to be positive. Maybe she's stumbled upon a soup kitchen. Or found her way to a charitable family, the kind who take in babies left on their front porch. Or she's befriended a stray dog, and they're surviving together under highway overpasses.

But her image keeps slipping from my mind, and her voice is already fading away.

Be Not Afraid
 

At nine
A.M.
on an August morning, I step from the boardwalk onto the sand at the Jersey Shore. The beach stretching before me is bare except for five low chairs far off to my left, three girls throwing a ball, and Jacob the bus driver, now in bathing trunks, waving to me. "Come join!"

Two weeks ago he asked me, via e-mail, whether Beth and I would like to spend a day with his family at the ocean. He, his wife, Carol, and their twelve-year-old daughter, Grace, drive several hours to the shore every Sunday. They could bring Beth, and I could meet them there.

Although I was astonished and delighted by the invitation—one of Beth's bus drivers was asking us to spend time with his family off the bus, out of town! could there really be such generosity in the world? he truly cares about her!—I hesitated. I am not a beach person. I am a stay-in-the-shade person. Nor do I like the idea of bathing suits, tattling my imperfections to the world.

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