Riding the Bus With My Sister: A True Life Journey (21 page)

Ah! Here it is:
mild.
I dig in deeper and turn up delineations so fundamental that I am embarrassed to be just discovering them. I learn that mental retardation is classified in four levels: mild, moderate, severe, and profound. Mild, which accounts for about 87 percent of all people with mental retardation, my sister among them, refers to an IQ of about 50 to 75. To supplement my understanding, I go to a psychology database. Among the books I am referred to is
Abnormal Psychology and Modern Life,
by Robert C. Carson, James N. Butcher, and James C. Coleman. The title is familiar; I turn to my dust-lined bookshelves and there it is, one of the textbooks I picked up at the end of a recent school year, on the "Take Me" shelf in the building where I work.

Here, I learn that people with mild mental retardation are considered educable, as Beth was, after my mother pressed the issue, and that "their intellectual levels as adults are comparable with those of average 8- to 11-year-old children." Wait a minute! I thought that whole mental age stuff was nonsense—but I read on. "Statements such as the latter, however, should not be taken too literally. The mildly retarded individual with a 'mental age' of, say, 10 ... is not in fact comparable to the normal 10-year-old in information-processing ability....The social adjustment of such persons often approximates that of the adolescent, although they tend to lack the normal adolescent's imagination, inventiveness, and judgment.... Often they require some measure of supervision because of their limited ability to foresee the consequences of their actions" (Carson, Butcher, and Coleman, Scott Foresman, 1988, p. 475).

I find this explanation wonderfully clear. Would that I'd had this textbook when I was in college. No—when I was in first grade. I'd like to memorize those lines so I could repeat them in any conversation I have about my sister.

As for the other levels, this book continues, people with moderate mental retardation, which refers to IQs between 36 and 51, were those I saw in the Trainable classes at school, and would have been Beth's classmates had the school system placed her where her IQ tests initially (and apparently shortsightedly) suggested she should go. Many cannot read or write, have very limited conceptualizing skills, and have poor motor coordination, which is evident in their clumsy movements; they can become partially independent in a sheltered environment. People with severe mental retardation, with an IQ between 20 and 35, have major problems with motor and speech development; and, although they can develop some hygiene and self-help skills, they will always be dependent on others for care. Lastly are people with profound mental retardation, which means an IQ under 20. Given their extreme deficiencies in adaptive behavior, their inability to master anything beyond the simplest tasks, their very basic verbal communication (if there is any speech at all), and their often severe physical disabilities, they need custodial care for life.

A charge races under my skin. I am a detective on a trail. I am amassing a profile of what might as well be a missing person.

Almost on a high as I pore over this book, and circle round and round the Internet, I lose myself for hours until—
how had I failed to see that?
—I spy the definition of mental retardation. It's right there, on The Arc's website. Not only that, but it is at the top of the very first page I discovered this evening; it was staring me in the face from the start.

There are three criteria:

1. IQ is below 70–75.

2. Significant limitations exist in "two or more adaptive skill areas," which means "those daily living skills needed to live, work and play in the community. They include communication, self-care, home living, social skills, leisure, health and safety, self-direction, functional academics (reading, writing, basic math), community use and work."

3. The condition manifests itself before age eighteen.

I find myself holding my breath in amazement, staring at 2: "adaptive skill areas." Shaking my head, I gaze at the list, as certain characteristics trigger specific associations for me:

Communication: The many times when "I don't know" indicates that Beth truly has no idea what she thinks; Beth muttering to herself during conversations.

Self-care: Her insistence on tempting pneumonia with shorts and sandals in cold conditions; her unbalanced diet, despite everyone's efforts to educate her about healthful eating and the harm that can come from ignoring it.

Social skills: The way she resorts to nasty verbal attacks rather than diplomacy with the fat girl on the bus; her inability to read Henry's nonverbal and even verbal cues.

Health and safety: Her reluctance to allow medical examinations; her denial of any possible medical consequences with "Thaz not gonna
hap
pen."

Of course, anybody could have one of these behavioral traits, but there have to be
two or more
of these adaptive deficiencies,
and
there has to have been a pattern of these from childhood on,
and
—though it can't be known definitively without a test—there has to be the lower IQ. Beth meets all three criteria.

I get it. This new information means that when I tutor Beth about street corners, or nudge her toward more appropriate attire for the weather, I should not expect instant assent or feel irate when I don't receive it. Indeed, anger is a foolish and pointless response when I should actually expect limitations. Especially when I factor in her stubborn personality. And even more especially when I consider that she's in a society that careens between bullying her and seeing her as a perpetual child.

I look up. I am in my dark apartment, and it is midnight, and I think, how could I have known Beth for all these years, and just come to this realization now?

I stare into the unlit room. I still have not untangled how much is Beth and how much is Beth's brain, nor whether, when she does not welcome new conversations, fashions, manners, boundaries, or concepts of space, it is because she cannot, or will not, or is simply not in a mood to open her mind at a given moment. I also have not ascertained how much, if any, of her self-centeredness is a result of her mental retardation. And, given the inextricable weave of nature and nurture, of self and society, that exists in all of us, it seems unlikely that I ever will.

But now I do know that, like me, and the drivers, Beth is on a journey. It's just that Beth's bus chugs along a lot more slowly.

I am shaky with insight. I want to tell someone; I need to. The first minutes of my fortieth birthday have already ticked by when I call Olivia's voicemail and leave her a message. I confess my ignorance. I spill out my relief. I tell her I have chased my loathsome feelings back into their pit.

When I hang up, I expect to relish this triumph. Oddly, though, as I rise to microwave my late dinner, I feel only queasy. Yes, there was a missing person here; we were twins thirty-nine times before I even started to find out about Beth. I turn off my computer, and watch the screen go dark.

It is a sleeting February afternoon, exactly one month since Mom met the ex-con, and Max and I are hauling my trunk down the stairs from my attic room. He is bracing the bottom, I am clutching the top, and both of us are in shock.

I am leaving, I keep thinking. I am going away from all that I know.

When I glance down the dark stairs beyond Max to the first floor, I see fifteen-year-old Beth, standing with Ringo, looking up at us, her mouth agape.

We are leaving because Mom has made it clear that we must. She wants to be with this man, and he doesn't want us around. Four days ago she told Laura to leave, and Max and I know we're no longer welcome, either.

We are too numb to speak. The sleet outside seems to have moved into my heart.

Dad is waiting in his car in the driveway to take Max to live in his apartment a few hours away in Pennsylvania. Not the mountainous place where we lived long ago, but somewhere new, near factories. Laura will join them there after she finishes her semester at a local college. He will help her rent a room around here until then.

As for me, yesterday he drove to the boarding school that my friend Keiko entered last year and begged them for a scholarship. He was very persuasive, and they agreed. I am to move there this very night. My entire life is changing in one day.

No one made plans for Beth. It seems a given that Mom will continue to care for her.

Beth watches as Max and I lug the trunk across the living room toward the front door. Laura is gone, having driven off with her car packed to bursting.

We don't see Mom. After we put this plan to her an hour ago—a plan Dad and Laura and I came up with in the last four days, a plan
Max didn't know about until we told him this morning, and Beth didn't know about until fifteen minutes ago—Mom retreated into her bedroom with this new man.

"
Beth, could you hold the front door open?" Max asks.

She shuffles forward in a daze. Her brother and sisters are leaving. She does not grasp why, and neither, really, do we. It is all happening too fast.

Sleet gusts in as she opens the storm door. Max and I cart the trunk past her, and I peer over at her face. She looks perplexed and alarmed, as if she's just dropped her biggest jigsaw puzzle.

Outside, Dad heaves my trunk onto his car roof and straps it down. "That's it," he says.

We sprint back to the house. Beth remains in the front doorway, Ringo at her side. Everyone says goodbye. I reach forward and do something I am not accustomed to: I hug her.

"
See you soon," I whisper, keeping cheer in my voice. Though how soon it might be, I can't say. I haven't yet learned to drive.

She does not answer as we release each other. She cannot find any words.

We race back to the car. It is packed so full of our stuff that things start to fall out when I open the front passenger door: my turntable, my typewriter, my stuffed rabbit. I tuck them back and then get in.

Dad throws it into reverse, and I press my face to the window. Beth is standing behind the storm door, looking out, holding Ringo in her arms. I lift my hand and wave. Slowly, she raises one of Ringo's tan paws to wave back.

Then I turn away. I cannot look at her, alone in the doorway. We drive off into the February gale.

1:15
P.M.
Bailey docks the bus outside Kmart and allows himself a restrained yawn.

"Number thir
teen,
" Beth says in a teasing tone.

"No, it was not," he kids right back. "It was only eleven."

She shakes her head. "Thirteen."

Bailey waves his hands. "What do I know? I'm just the driver." He's an apple-cheeked, melon-bellied man of medium stature, whose bushy salt-and-pepper beard strongly hints that he's recently sighted forty in his headlights. His eyes, too, disclose personal information; although they spark with humor from time to time, there are pouches beneath his lids, evidence that he craves sleep. He reaches for his jumbo-sized cup of coffee, tips the rim toward his lips, and misses, splashing a brown stream down his blue driver's shirt. Dabbing at the cloth with a napkin, he steps out of his seat. "Okay," he announces, facing the aisle, "nobody sees that I spilled coffee on my shirt, right?"

Passengers look up. Some carry umbrellas, prepared for the summer thunderstorm that's been predicted.

"I don't see nothing," a man in a Hawaiian shirt humors him.

"What coffee?" a young mother in a sundress says, playing along.

"It makes a good
design
" Beth says. "Now you never need a tie."

"Why, you—" Bailey says, and she wards off any retaliation with a laugh.

She turns to me. "Thaz Crazy Bailey."

"Why'd you give him that name?" I say.

"'Cause he's
fun.
He counts my yawns. Sometimes I fake yawning to trick him."

"It's stuffy in here," a teenage girl applying lipstick says.

"We got five more minutes at this stop," Bailey says. "How about I open the sunroof?"

He positions himself beneath a hatch in the bus ceiling and pushes, grunting, until it pops up. In whirls a breeze, carrying the moist, earthy scent that portends a shower.

Bailey, Beth confirms, is indeed tired. His adolescent kids have grown fond of mischief lately—every day brings a complaint from a neighbor, a fresh variation on sulking from the accused—and last night being no exception, he found himself contending with one of his kids well past his desired bedtime. "I don't give up," he says. "I keep up the hope that it'll work out."

A few days every week, Bailey, like many of his driving cohorts, works a split shift. That means he climbs behind the wheel when the run first gets under way, often at four or five
A.M.
, and parks back at the terminal at eight or nine
A.M.
Then he's off duty for a few hours, free to rest at home if he wishes. After lunch, he returns to the driver's seat, wrapping up by six or seven
P.M.
, when most of the buses turn in for the night.