Beth and I, both in our late thirties, were born eleven months apart, but we are different in more than age. She owns a wardrobe of blazingly bright colors and can leap out of bed before dawn. She is also a woman with mental retardation.
I’ve come here to give Beth her holiday present: I’ve come to ride the buses.
In the predawn moonlight, as she chattered on about our labyrinthine itinerary, well aware that there are few if any other people in this world devoted to a calling of bell cords and exhaust fumes, she spontaneously threw back her head and trumpeted, “I’m diffrent! I’m diffrent!” as if she were hurling a challenge with all her might beyond the limits of the sky.
In the course of my life, cars and trains and jets have whisked me to wherever I wanted to go, and I was going places, I thought; I was racing my way to becoming a Somebody. A Somebody who would live a Big Life. What that meant exactly, I wasn’t sure. I just knew that I longed to escape the restrictions of what I saw as a small life: friends and a family and a safe, unobjectionable job that would pay me a passably adequate income. Although this package encompassed just the kind of existence many people I knew were utterly content with, I wanted something more.
Then, in the winter of my thirty-ninth year, I boarded a bus with my sister and discovered that I wanted broader and deeper rewards than those I would find in the Big Life.
Mental age. It was as if they thought that a person’s daily passions—and literacy skills, emotional maturity, fashion preferences, musical tastes, hygiene habits, verbal abilities, social shrewdness, romantic longings, and common sense—could all fit neatly into a single box topped, like a child’s birthday cake, with a wax 7, or 13, or 3. […] My friends seemed relieved to learn that people with mental retardation are individuals. I was relieved to omit just what an individual Beth happened to be.
I did ride with her, and over that day I was touched by the bus drivers’ compassion, saddened and sickened by how many people saw Beth simply as a nuisance, and awed by how someone historically exiled to society’s Siberia not only survived, but thrived. Indeed, the Beth I remembered from years ago had a heavy, ungainly gait; the Beth I saw now was not only nimble-footed, but her demeanor was exuberant and self-assured. I was aware of my earlier objections to her bus riding, but they began to feel inexcusably feeble.
“Yeah,” she says with a quick nod. “He’s cool.”
Ah, yes. Cool. As my speech might sometimes seem unintelligible to Beth, so can hers seem to me, because Beth has her own lingo. And in Beth-speak, as I have gathered from her letters, “cool” does not concern hip attire or trendy indifference. Instead, it is the term of highest approval, bestowed only upon those people Beth deems worthy of her attention and trust, and crucial if one is to be promoted into her personal Top Ten (though, in truth, hip-hop shades or chiseled Brad Pitt features—neither of which the Professor possesses—are apt to increase the likelihood of admission). “Yes,” I say. “I guess I do mean he’s cool.”
“Every day right here in this seat, I have history riding with me.
And that’s what I like about it. There’s so much richness on a bus—really, so much richness everywhere—if you just develop the ability to look at life with a different eye, and appreciate the opportunities offered to you.”
“I told her, but she said I still couldn’t come in. If they don’t want me there, I don’t want to go there.”
I try to wash the outrage from my face, as well as my surprise at her reaction. I think of the bookstore customers who’d call the president of the company if we dared say such a thing to them. I think of the libraries that homeless people have sued successfully so they could pass their days at a reading table. But lawyers, and the right to demand rights, are part of a world that Beth’s aware of but doesn’t seem to want to inhabit.
There it is again, that deep voice grumbling on inside me: How can she be so blithe about the possibility of trouble? You can’t let her do that. She may be putting herself in real jeopardy!
I take a deep breath. Despite her familiarity with this city, I’m not sure she fully understands, or accepts, how perilous the world can be. Yet if I get too “bossy,” I know she’ll dig in her heels all the harder. I also know it would be a great loss if I let some inner voice of criticism come between us. I’m enamored of her feistiness and her keen-witted street savvy. I feel privileged to be her sidekick. I want this year to go on.
Mommy sits Max and Laura and me down in her room and closes the door. She tells us, “Beth needs a little extra help sometimes, and whenever you see that she does, help her. Don’t you ever forget: it could have happened to any one of you.”
Daddy says, “Some people send mentally retarded kids away to institutions, but we’ll never do that. Ever, ever, ever. We’ll always have room for her.”
Then when they get up and open the doors I think about how we just heard two words that they never say in front of Beth: “mentally retarded.” We never ask why, we just go back to playing with her. But we know, too, not to say those words where she can hear them.
I tell my friends I want to know what “their own kind” means. […] Okay, so she’s a tiny, sassy, roly-poly, Crayola-bright, nonpracticing Jewish chatterbox, and he’s a five-feet-four, bashful, sinewy, Lycra-clad, nonpracticing Baptist loner. Yet she makes sure he’s safer by buying him a bike helmet. He makes sure she’s prettier by shaving the hair that grows on her face. They scratch each other’s backs, and they accept each other’s moles. They argue over her queen bee ways or his reticence; they make up. He hangs his bike awards in her apartment. She keeps the redial button on her phone set to call him. They agree that they both want their own space and should remain unmarried, visiting in mornings or evenings, remaining alone with their dreams. I am still longing to meet my own kind, whatever that is, and I wonder who among these critics has met theirs.
The hostess, who is also the waitress, has shed all traces of her earlier inhospitality, and she doesn’t ignore Beth and Jesse, as some waitresses would do, waiting for me to act as the interpreter. Instead, she asks them what they want. It must be taxing for her, I think, as she pockets her pad and walks off; it’s perplexing enough for me. And how can she assess the proper way to behave, when my conversations with friends have made plain to me how little even the most enlightened of them knows about people like my sister? After all, until Beth’s generation, many people with mental retardation were shut away in institutions and attics.
Beth wipes a bread crumb from Jesse’s small mustache. I bite into a roll, so frazzled that my hand is trembling. Now I understand that it’s not just Jesse’s blind eye or mental disability that discourages him from accepting my offers to join us in restaurants. There’s so much separateness in this almost empty room that I can’t breathe.
“Don’t pay him no mind,” Jesse says quietly, having observed more than I’d realized. “People is gonna look all day, and they might say that they don’t think it’s right, but it’s not really for them to judge. As long as you be nice to a person, looks don’t matter. You in this world, and you gotta accept it.”
“Yeah,” Beth says. “Sometimes people give us looks, but I don’t think about it.”
“You want to know ‘bout love?” he says, lowering his glass. Then he sits up straight and says slowly, “Love is when you care for somebody, and you be willing to go out of your way and do anything for that person, and to take care of that person, and if they have problems, that you can help them out any way you know how. If they sick, that you can bring ‘em medicine, or give ‘em a helping hand. That’s what love is.”
Put a lid on it, Beth, the dark voice inside me wants to say—the same voice that’s been piping up since this year began, and especially in my past few trips to see her. You’ve said precisely the same thing to every driver today, regardless of how the last one responded. Can’t you get back to a sweeter mood? Would it be such a hardship to listen to someone else for a minute?
I glance around, and realize with surprise that all the passengers happen to be female. Soon our chat in the front of the bus has rippled out to every unrequited teenager, too-young-to-vote mother, starry-eyed fiancée, common-law wife, football widow, three-time divorcée, golden-anniversary grandmother, and avowed single woman until the whole bus is talking together about men: the good, the bad, and their own choices.
[…] Maybe this is what it used to be like once upon a time. Maybe, when women gathered for quilting bees, or when men played checkers outside the general store, or when everyone came together at village dances and July Fourth picnics, this ease helped people feel less alone in their worries. Maybe, too, this was the swiftness with which neighbors became friends, and the simplicity with which one person’s tale became another person’s teacher.
I hang up in a swirl of relief and shame. I have lived with mental retardation for thirty-nine years, and I have never asked anyone what it really is. In the interest of raising four equal children, our parents almost never uttered the words except in private and never added books about mental retardation to our shelves. In fact, I’d read about this disability only in works of fiction […] and none of them answered the questions that I hadn’t thought to ask. But why should it have occurred to me to do so? Mental retardation had just always been my sister, and my sister had always been it.
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.
Wouldn’t it be nice, even liberating, if I could begin to see beyond my cynicism and resistance and controlling impulses? […] I think about how so many of these drivers, at crucial turning points, learned to view and inhabit their own lives in fresh ways, [and] slowly it comes to me.
Beth is living by her own choices, unfettered by the whims of an institution or group home placement decision; she travels according to the starred dots on her map; she eats what she likes when she’s hungry; she boldly dresses in a fireworks display of ensembles that declare, Look at me, I count in this world. She is, in many ways, the embodiment of self-determination.
A tension that I hadn’t even realized I’d been feeling—a tension that has possessed my body throughout this day—for weeks, no, for months—begins to ease.
Beth has sought out mentors in places where others might not look, and, moreover, taken the time, and endured the pain, to weed out those drivers who are decent and kind and reflective from those who are indifferent or hostile. The ones I’m meeting are, I realize as I quickly do the math, only about a sixth of the whole bus company. That took Beth a huge amount of trial and error—and, yes, determination. I shake my head, amazed at how much I’d somehow missed, and then, with a surge of optimism, wonder if one out of six people in any profession or community would also be exceptionally thoughtful. How could I really know? Have I ever spent this much time exploring the worldviews of my colleagues at school or the bookstore? Do I have a clue about whether my neighbors feel committed to the Golden Rule?
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.
“I wish I had a ‘Help Anyone, Anytime Book,’ like Jack’s.”
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.
There, in this quiet corner of the hospital, stroking her skin, I look into her eyes. They are so scratched and foggy, so hard to see inside. Yet in this moment, they are also stripped of all her defiance and foxiness and mischief. She looks at me with a fullness of trust that I seldom see.
And something happens: the ice in my heart starts to melt, and I feel a rush of love pour in. The sensation warms and surprises me, and I wonder if she sees astonishment in my eyes. She can’t see much anyway and, besides, she’s drifting off to sleep. But somehow I’m sure she knows.
Dad realizes they are lost.
“I don’t know where we are,” he admits, squinting through the blackness.
“Will we get home?” Beth asks.
“Somehow. I’ll get us there somehow.”
She’s quiet for a minute, then she looks at him. “At least we have each other,” she says.
She goes on and on, and now the dark voice, which I thought I’d laid to rest last month, roars within me again. I squeeze my hands together. When I started riding the buses, I remember, I thought of the people who didn’t like Beth as insensitive and narrow-minded. Now I find myself more sympathetic to their point of view. Yes, some of them are coarse and offensively vocal. But she is so loud. And she talks all the time. About nothing. I know many of us babble on about nothing, too, but she does it over and over and over—and over and over and over—and it’s really eroding the limits of my endurance. Dad used to tell us he came to dread their car rides to work for precisely the same reasons. That was twenty years ago.
I think: I wish I were a saint.
I wish I were a magnanimous sister who could feel compassion for the way that Beth is re-creating a dysfunctional family environment on the buses.
I wish I had the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
I wish I could learn the language of Maybe It’s Good Enough. Maybe it’s good enough that she can memorize seventy drivers’ schedules and stand up to racists and read. I wish I could be a realist who could accept Beth’s level of development and not long for more.
I wish I were like acquaintances who think that people with mental retardation are “God’s true angels.” I don’t want to think, “I wish she’d behave a little more appropriately today.”
I wish I could change.
For a moment, as I stand halfway up the aisle in the now still bus, embarrassment courses through me. I realize how I keep turning to these drivers to help me steer my own life. But it has come to feel like a different world up here, with different rules, and, besides, I think, I am too desperate to remind myself that I should keep my mouth shut. I wait until I’ve calmed down, then slip into Beth’s seat. I face him, as she always does, until he feels my eyes on him. He peers over at me.
With a jolt, I know what scares me.
It’s not just the same old crush with a new face, or the same old song with the same wrong words. It’s not just the pattern she doesn’t see, or care about, and therefore cannot or will not change.
It’s that Beth seems to need a cataclysmic event for her to change in any way—an event like our mother’s complete abdication of her responsibility to protect her own child, Juanita’s rejection, or Rodolpho’s abandonment. This seems true whether she’s being called upon to develop resourcefulness, assertiveness, or just basic self-restraint. I look at her and feel a clutch in my throat. What will it take now?
Is this all there will ever be to her life?
I discover that [my mother] is not the cold-hearted, mayhem-loving monster I’d imagined, but a deeply unhappy and lonely woman who somehow got caught up with a violent con man, an event that fills her with shame. […] After Beth had been sent away, he’d almost beaten my mother to death—and only then, finally, had she fled, with fifty-seven cents in her hand.
I realize I need to learn forgiveness and compassion. Little by little, season after season, my days stop seeming so dark and my nights so scary.
I tell Laura how much better I feel, that my depression is lifting; I can even write again. I tell her that it may be the hardest thing she ever does in her life, but that if she can face it, she can do anything. She relents as she listens, and one day she too picks up the phone.
[I] make out my reflection far too well, hauntingly blue and close. I cringe at the expression on my face.
Failure, it reads, and terror. The way my mother used to look when she trudged into the house after one of her dates. The way I used to feel when love withdrew. […] There is self-pity, too.
That old darkness rises within me. Don’t think about this, it says. Keep telling the world, No, I can’t, I’m sorry. Keep shutting the door.
But I do think about it. Beth is in stitches along with her friend right in front of me, and I realize with a jolt that for all her failures and terrors, I have never seen self-pity on her face. Not even a trace. Not once.
I sit up to pull the curtains closed. But as I peer up to the light, I remember Beth turning our attention to the moon over and over as we drove to our grandmother’s apartment so long ago. I think of what she used to say: “Moon’s following us!” Suddenly I realize why this image has stayed with me all these years. It’s not because the moon’s the big thing and we’re just puny underneath and she had it all reversed. It’s because no matter how far you drive, or how hard you hide, you can never leave the moon behind. Perhaps this is what she meant all along.
[…] Maybe I should actually go to see her this year. Maybe I’ll call my editor and put him off. It’s time I went to visit my sister.
I lean against my wall, moved and chastened. For fifteen minutes I watch the flurries turn to serious snow outside my window and listen to her, and think how hard this apology must be for her—and how hard all this is for me. I had always told myself that facing my feelings about my mother was the hardest thing I would ever have to do, but now, standing here after telling my sister that I hate her, and hating myself for hurting her so, I realize that being a good sister to Beth might be even more difficult. No one can be a good sister all the time. I can only try my best. Just because I am not a saint does not mean that I am a demon.
There is just enough sun left for me to make out a silvery bus, moving like a fish, winding between the curbs. Maybe a bus where my sister sits. […] To the east, there’s another, and another, and another. Each one its own private history class, or luncheonette, or quilting bee, or schoolroom, or comedy theater—yet each one linked, one person at a time, to all the others. Because I can see, as Rick points it out, how they glide along, stopping for riders—riders who might have been on that run last year and are now over here, and riders from over here who might be transferring to a bus over there—and how the journeys seem separate, yet are constantly and inextricably joined together. I step back and take in all the buses coasting and turning and stopping and going—the enormous web of the world.