Riding the Bus With My Sister: A True Life Journey (4 page)

"You could
try,
" she says. "You don't have to ride
ev
ry day."

I see the thrill of the dare on her face. All right, I think, let's say I didn't do it with the full dedication that Beth has...

She tilts her head back, as if waiting for me to chicken out. I hold her look, calculating wildly about when I could shift my meetings.

The bus berths at the curb, and the door opens before us. "So?" Beth says, wearing a teasing face that's melting into hope.

I stare at her.

"Well?" she says.

And I think,
You need to do this, even if you don't know where it will take you.

I draw in a mighty breath. "O ... kaaay," I say to Beth.

"Really?" she says.

"Yes," I say, more emphatically and, as I say it, I know I will do it.

"And how much will you come?"

"Uh," I say, stalling. "What about every two weeks?"

"What about
more
?"

I pause, and exhale. "I'll try my best," I say. "Whenever I can, I will."

"Oh, good!"

With trembling hands, I fish in my coat pocket for a token. A golden token that cost $1.10: the price of admission for this odyssey. Beth is bounding up the stairs toward the fare box, radio in her hand. I look down at my briefcase, then up at Beth standing at the top of the steps, ushering me into her world.
A year,
I think.
For her. Just one year.
I rest my hand on the railing. Then, not knowing where this bus is going, I hop aboard her life.

This is a story we tell in my family.

"
I'm worried about the new one," Mommy says to our neighbor Mrs. Stein. "I think something's wrong with her.
"

Mommy is holding baby Beth in our New Jersey yard, leaning over the picket fence between the two houses. Roses bloom everywhere. Laura and I run around on the grass.

"
Oh, now, don't worry," Mrs. Stein says. "She's only two months old.
"

"
But her birth ... it wasn't like the others. They gave me a drug so l wasn't conscious during the delivery. Later they told me they'd had to use forceps, and they squeezed her head.
"

Mrs. Stein moves closer. Her two girls wave to Laura and me through the picket fence.

"
Maybe your hands are too full," Mrs. Stein says. "Laura's only two and a half, and Rachel's just over one year. With three under age three, I know I'd be
meshuggah."

Mommy sighs and looks down at Beth. She just lies there like a doll, not moving at all. "I think that's why I didn't notice anything at first," she says. "But then, when she was maybe five weeks old, something struck me as not right...
"

Mrs. Stein's girls come over, they stand as high as her knees. We can't reach them, so Laura and I start spinning round and round and then they giggle and do the same.

"
Ach, what can anyone really see at five weeks?" Mrs. Stein says.

"
She just wasn't reacting like the other two had. She'd lie in her crib, staring for hours. You could clap your hands above her head, and she wouldn't look. You could come near, and her eyes wouldn't focus on you. Her expression was always ... empty.
"

"
She'll catch up.
"

"
She's still like this. Except when she arches her back and holds stiff, but she barely moves her legs or arms. And she doesn't cry
."

"
Even when she's hungry?
"

"
No. I'm afraid that she's ... I don't know.
"

Laura and I spin into a heap. The girls over the fence do, too. Mrs. Stein is looking into Mommy's arms at Beth.

"
She's just a little baby," she says. "Don't worry about it." Mommy's eyes are fixed on Beth. Her face is tight and scared.

Every day, Mommy stands beside Beth's crib. Sometimes Mommy holds her up to sit, but then Beth's head just droops to the side. She can grasp a little, but she won't reach.

Grandma comes over some mornings, and Mommy sits with her in the dining room, drinking coffee, whispering. At night, Daddy comes back from the school where he teaches and stands at Beth's doorway, staring with Mommy. "Tell the pediatrician," he says.

Laura and I are waiting with Grandma in the doctor's office, and Mommy comes out with Beth. She's got that sad look. "He did the exam," she tells Grandma, putting us in our strollers. "But he says nothing's wrong.
"

"
He says I'm just a worrying kind of mother," she says the next month.

"
He says I should just relax," she says a month after that.

Finally, when Beth is six months old and Mommy goes to the doctor with Beth again, he picks her up in his arms and throws her up in the air. She does a somersault up by the ceiling, right in front of Mommy's eyes, and he catches her as she comes tumbling back down.

Beth's expression doesn't change at all.

"
You're right" the doctor says. "There's something wrong
"

"
I'm finding another doctor," Mommy says to Grandma when she comes back to the waiting room. Then she whispers, "We're thinking she may be retarded." Mommy fits my boots onto my feet. "But, oh God, I hope we're wrong.
"

Right after the new year, on a windy, flurrying morning when Beth is seven months old and still not sitting up, she goes to stay for many
weeks in a children's hospital in Philadelphia. A special doctor there will try to find out if Beth is what our parents worry she is, and why, and what to do about it. Mommy and Daddy are both from northern New Jersey and have never been to Philadelphia, but they've been told this doctor is the best. They'd drive to Mars for the best.

The doctor studies everything medicine knows about in 1961—the papers I later see use words like
red cell fragility, platelet count, electrolytes, spinal fluid, amino acids in the urine, skull x-rays, EEG.
He biopsies some tissue on her leg to search for signs of diseases common to Ashkenazi Jews, because that's what we are. The biopsy leaves behind marks on Beth's thigh, white lines like a train track to nowhere.

Every weekend, Grandma takes care of Laura and me while Mommy and Daddy drive the three hours to the hospital. Snow pelts the roads. The icy streets are narrow, and sometimes the car skids. Week after week, they enter the hospital and walk to Beth's room, seeing things they've never seen: babies with oxygen tubes, babies with TVs, the hollow faces of bald children, weeping parents. Then they reach Beth's room, and the doctor turns to them, and announces that there are still tests to be done, but that Beth has shown no improvement.

They drive home in the snow, demoralized.

Then, after four weeks, the doctor calls and requests a special visit. This is the one, they know. The one where they'll finally learn it all.

They get to the hospital. Someone tells them the doctor will meet them soon, and they stand at the end of a long corridor, trying to breathe through the moments. They stare down the hall, waiting for a glimpse of his approaching form.

Finally he rounds the far corner and comes toward them, walking slowly. His face darkens as he draws near.

Then he is in front of them. They stand in silence. At last he puts his hand on Daddy's shoulder, and takes a deep breath. "We know she's retarded," the doctor says, "but we don't know what caused it. I'm sorry. There is nothing left that we can do.
"

Mommy collapses into herself. Daddy stumbles back. Their daughter is mentally retarded, and they don't know why. All they know is what they've learned in the last month: that she will not develop normally; that she will have limited intellectual, emotional, and maybe
even physical capabilities; that, given her current progress, she might be bedridden for life and communicate in grunts and groans.

They bundle her up and take her home, wipers clearing the snow from the windshield. Laura and I run to hug them as soon as they come in, and then they teach us the two biggest words I'll ever know, two grown-up words about our sister.

5:15
A.M.
"Uhhh," I groan, throwing the covers over my eyes as Beth, in green pajamas, spins on her halogen lamp. "Do you have to get up so early?"

With no alarm clock except the one inside her, Beth has just burst awake and out of her bedroom, heedless of the stars still visible in the sky, and of me, still half-asleep in her living room. Her linoleum floor is my bedroom, and since her teal velvet love seat doesn't accommodate a full-length body, three sofa cushions from my apartment have become my bed. Though with the winter wind tom-tomming at the windows, and the gaps between the cushions opening up every time I turn, I can't say I had a cozy sleep.

"
Thiz
when evrything be
gins,
" she says. In my sleepy state, the irregular cadence of her voice reminds me of the higgledy-piggledy way she uses capital letters in her writing.

I hear the weather channel come on, and then her dialing the phone. "Who're you calling?"

"'Livia."

I peek out from the covers. "Olivia's not in her office now, is she?"

"No. Iz her machine." There is a pause, and then she says into the receiver, "Iz a high of twenty-five today, so you better dress
warm
" She hangs up.

"You called to give her the weather report?"

"
Ev
ry morning," she says.

"But by the time she comes to work and hears it, she'll already be dressed."

"Iz okay," she says. "'Livia likes it. Iz good for her to know. I don't do it on weekends. Iz okay." Then she shuffles into her bedroom for a bath, leaving the light blazing.

I straggle off my sofa cushions. I may not have slept here before—in fact, besides her boyfriend, Jesse, I don't think she's ever had an overnight guest—but the scents of Crayola crayons and Hershey's syrup, the Pebbles and Bamm Bamm throw pillows, the kitten calendar from the dollar store, give me a sense of déjà vu, since, as teenagers, right after the worst times, Beth and I shared a bedroom. Beth used to laugh at my nighttime compulsions, which helped me drift off back then: my stuffed rabbit, the blankets placed just so. But has anything changed? Last night, when my meticulously arranged bedding slid off my cushions and I fumbled about for them, I heard her old "aaah-hah!" with its touch of wicked glee. I'd grabbed at the quilt and laughed back weakly.

Now, I pull on black leggings and a black shirt. The living room contains only her small dining table, the love seat, the television set, a coffee table, posters of 101 Dalmatians and Casper the Friendly Ghost, and a tidy formation of toy cars for Max's kids. The dining table is not for meals, but for holding Beth's backpack, key chains, radio, and cassette tapes, which today include K-Ci & JoJo, Right Said Fred, Gloria Estefan, and her old favorites, the Osmond Brothers.

Occasionally, in the evenings, the room also houses Jesse's bicycle, when he pedals to her apartment building to see her in the few hours between her last bus and her nine o'clock bedtime, at which point he pedals home to watch martial arts movies on late-night television. Or sometimes he comes over at sunrise on Sundays, the one day when the buses don't run. By mutual agreement, however, those visits are brief, too, with Jesse leaving by midmorning. This way, they can each spend Sundays as befits them: he goes off to tool around on his twelve-speed bicycle and she, whose only athletic interest seems to be the three-block dash for the buses, settles down for a marathon of pretzels and television. Beth and Jesse seem to prefer to keep their relationship private, so I already know that I probably won't see Jesse much. But, based on past visits, if we're in her apartment when they're on one of their nightly phone calls, Beth will probably hand me the phone, saying, "Jesse wants to speak to you." Then, as
Full House
blares away on her TV, he'll talk to me about bikes, and life, for an hour.

I turn to her fifth-floor window. Her eight-story building, occupied mostly by senior citizens, is one of the only high-rises in the city, so I can make out blocks and blocks of small row houses sweeping away to the north. Though I can't see that far, I know they extend to the bus terminal two miles off, then thin out as they spill into country. To the east, a wooded mountain interrupts the view of the sky, an evergreen wall at the edge of the city.

Beth moved here after living in group homes for five years; before that she'd always lived with the family. I've long wondered how she felt, as she took in this view in the beginning, alone with the bray of traffic. When I asked, she would say, "Fine." A few years later I wondered about it all the more, when I left Sam and was alone for the first time, too. In the gloom of those days, I remember telling myself, Well, if Beth can do this, so can I, and maybe someday I'll feel fine, too.

I'm two rooms away from her now, but I know that, while I load my deep coat pockets, outfitting myself for our journey—tissues, Chap Stick, pens, book, tokens, toothbrush, herbal tea bags, hand lotion, cell phone, apple, and journal—Beth is dressing with nothing but style in mind: mulberry-colored sweatpants, lilac socks, lemon-lime Tweety Bird T-shirt, and, though we both have ample chests, no bra, because bras "dig in," and she can't seem to command her fingers to hook them. Besides, like pants in "warm" weather, bras are something that only other, more mundane, humans wear.