Riding the Bus With My Sister: A True Life Journey (3 page)

I set my briefcase down to give her a hug. I feel as if I tower over her as I lean in close, and my tailored black overcoat, burgundy skirt, and black velvet blazer seem not understated as much as entirely underdressed. We wrap our arms around each other, though I know it will be fast; Beth doesn't care to be touched, she has admitted to me, but hugs me because I like to.

Still, her squeeze, quick though it is, is just long enough for me to uncork a sudden memory: we are three and four years old, admiring a spider web under the house in the shadows of the lattice, and I am tickling her legs in the grass-scented shade. Eventually I grew into my life, smoothing down all the quirks that would make me stand out, while Beth nurtured all the quirks that ultimately produced this imp in my arms. How had we come to evolve as we did, I wonder, as she pulls away from me. We were born into the same family, we relished the same simple moments, and, until a certain sleeting February afternoon when we were teenagers, we shared the same major losses and joys. Yet we turned out so differently. Is it just her mental retardation that made her who she is, or did her experiences after, or even before, that February day somehow spin her personality in this direction? Memories flicker through my mind as I try to trace the thread back to the beginnings of my irrepressible sister.

"Down
here,
" she says, wheeling about and hastening along a corridor of office doors, her feet turned out in her customary divining-rod style. "I wore pants today because iz thirty-two, but iz supposed to be forty later so I'm gonna change to
shorts.
"

Shorts. Always shorts, and often her trademark violet sandals or blueberry flip-flops, as long as the temperature is above forty. I think it has to do with vanity. Not that she feels she's got Rockette legs, nor does she even have a full-length mirror in her apartment. And, though she draws attention to her sandaled feet by painting each toenail a different fluorescent color, glamour isn't the point either. It just seems imperative to Beth to show that she can brave the cold when the rest of us bundle up.

She patters into a conference room. Around the rectangular table sit three women: redheaded Vera, blond Amber, brunette Olivia. The room is not large, and Vera and Amber, in their casual sweaters and pants, have set up at one end of the table, while Olivia, arrayed in a navy blue pants suit, occupies the other.

"Have a seat," Olivia says to me after I shake their hands. I realize that although Beth has peppered her letters with their names, I know nothing about what each one does for her or, for that matter, anything about the system at all. I settle into a cushioned chair across from Beth.

"Let's start with finances," Olivia says. She is a pretty, tall woman in her early forties, with an alabaster complexion and raven hair that she wears long, her bangs framing a pair of extraordinary eyes. They're turquoise, I see, as she pages through her paperwork. Navajo barrettes, studded with stones the same color as her irises, clip back her hair.

"Okay, finances," Vera says, lifting up a paper. She's somewhat older, petite, pacific, bearing the aura of a no-nonsense grandmother. She speaks slowly, her words shaped by a subtle Spanish accent. "Beth currently receives $527.40 from'S.S.I.," she reads from her page.

"What does that stand for?" I ask. "Social Security?"

"Iz my check evry month," Beth says.

"It stands for Supplemental Security Income," Amber explains. Perky and gum-chewing, blond hair swept back from her face, she's the youngest of the three by at least a decade.

Olivia, friendly and easygoing, who seems to be running the meeting, elaborates. "S.S.I.'s a Social Security program that gives monthly benefits to people sixty-five or older, or blind, or who have a disability and can't work, provided they don't own much or have a lot of income."

Vera goes on, detailing how much of the'S.S.I. money goes to Beth's subsidized apartment, groceries, phone, cable, burial fund, spending money, and bus pass—"the most important thing."

"It sure
iz
" Beth says. "You
know
it."

I suddenly remember that Vera visits Beth in her apartment a few times a week; she must be the person whom the drivers call Beth's aide. Amber seems to work with her. At last, the cards are shuffling into order. I find myself nodding, suddenly understanding—and almost miss Olivia saying "On to health."

Amber pulls out a report written by Mary, who, I'm told, is Beth's medical caseworker. "Your weight is 166 right now," she says as Beth shrugs, "and your cholesterol is still too high."

Vera says, "It's those Ring-Dings and chocolate pudding, and the way you eat on the bus instead of going home for meals."

"I eat what I
like,
" Beth says. "I eat hot dogs too, and spaghetti and meatballs, and cream cheese on bagels, and macaroni and cheese."

Vera says, "Those foods are not going to help your cholesterol. You could develop heart problems."

"Thaz not gonna happen."

Amber simply continues. "It's been a few years since you've seen a dentist."

"I brush my
teeth.
"

"For a thorough cleaning, honey," Olivia says.

"They can look in my mouth, but I'm not letting them put their fingers in. I'm not doing
that
" I learn that when dentists have tried
that,
her reflexes have immediately assumed command, compelling her to shove them, quite forcefully, away.

They drift off into a discussion of where to find someone who'll take her medical assistance card, and who also has experience with patients with special needs. My attention strays, and I glance at Beth. She's not engaged either, so we make eyes at each other, as if once again we're little kids at a dinner party of adults who are up to important and mysterious business. It's easy to fall into this secret silliness with Beth.

"Your uterine fibroid seems to have stabilized," Amber goes on, as we return to the discussion. "But the eyes really worry me. She has a rare condition. Her corneas are becoming scratched and opaque, and it's affecting her vision."

"Is that why your eyes have looked foggy for the past several years?" I say.

"I don't know."

"Does it affect your vision?" I ask.

"I don't
know.
"

"Yes," Vera says. "I help her with eyedrops a few times a week. And she's got a follow-up appointment with the doctor in a few months."

I peer at Beth with concern. Again, she shrugs.

Then they review what Beth is not: a drug or alcohol user, a smoker, a person with high blood pressure. I peek across the table at the paperwork. Olivia is updating a typed sheet that lists "Diagnosis: Mild Mental Retardation." I also make out, on a different set of papers, that Olivia is Beth's "case manager," Vera her "program assistant," and Amber her "team coordinator." Whatever all that means. I have never thought about any diagnosis besides the blanket term of "mental retardation," and God knows I haven't a clue about what any of these titles designate. It all seems quite complicated, but I feel too self-conscious about my ignorance to ask them to clarify anything for me.

"Safety," Olivia says.

"Sometimes you walk in the street," Vera says.

"When there's
snow.
"

"Can you walk on the sidewalk?"

"I'll
try
"

"You need to do better than try," Vera says.

"You could get hurt," Olivia says.

I glance around, and detect what my own little-kid mode had prevented me from noticing: their tense brows and exasperated slumps. Beth notices too, but rather than give in to what they want, she says, "I know how to use 911. I know what to do if there's a
fire.
I don't go out in the dark 'cept for the early bus. And if anyone gives me trouble, Jesse'll look out for me."

"We just want to make sure you're safe," Olivia says.

With quiet defiance, she says, "I'm
safe
"

"Okay," Olivia says, writing, as I hear a sigh coming from one of the others. "Now, what are your important relationships?"

Beth gives everyone at the table an as-if-you-don't-know grin. "Jesse. The
drivers:
Jack, Bailey, Rick, Timmy. And my little brother, Max, brings his two kids to visit sometimes, they live a few
hours
from here, and I talk with my mother on the phone sometimes, she lives in North Carolina. Dad lives across town, and Rachel near Philadelphia, and our older sister, Laura, lives in Colorado. I write them letters—sometimes."

She sits back, giving me a different sisterly look, one that says,
Of course we both know why it's like that.
I glance at Olivia and Amber and Vera, and I can see in their eyes that they know it too: the family rarely visits Beth because there's too much friction. I think about the issues we discuss when we talk about Beth. Some family members say they're tired of speaking with a person so disinclined to respond that she might as well be mute. Others have waged a campaign for her to shrink to a healthier size, only to retreat from the futility of it all. Then there are the buses. Our mother has actually met with Beth's support people over the years, begging them to make Beth get a job, a volunteer position, just something to encourage her to be a fuller member of society. They replied that they'd do whatever Beth wanted, and that wasn't what she wanted. Since then, the family has spoken of "them" with distrust, or sometimes disdain. We're suspicious of their guiding principles, not that we know what those principles are. We haven't asked, and they haven't thought to offer.

But they are sitting before me now, one, two, three individuals, not a "them" at all, and I see that they
are
only doing what Beth wants. Besides, I know how contrary she can be when not given her own way. If she doesn't want what you're proposing, no matter how kind or encouraging you might be, you're bound to hear this response: "Stop bossing me around."

"What are your dreams for the future, honey?" Olivia asks.

"To go to Disney World with Jesse. To live with my niece and nephew for one day."

"What about the coming year? Do you want to take any classes?"

"No."

"Do you want to join any organiz—"

"No."

"Do you want—"

"No."

"—a job?"

"
No.
"

We get up to leave and, as we shake hands, Olivia tells me to expect her written report on this Plan of Care meeting in a few weeks. But now that I understand what it is, I also know what its conclusion will be: "Beth does not wish to change anything."

Though that's not quite true. There is one thing she wants to change.

I discover this after the meeting. I'm all set to take her to lunch, some cheery place where our worlds can stay merged from the menu to the check before we exit into our separate lives. But the moment we finish up with Olivia and the others, shuttle down the elevator to the lobby, and open the doors into the sunlight, Beth launches herself full speed up the street. Her purple jacket billows behind her, and her tiny feet fly like wings.

"Where are we going?" I call out, stumbling behind in my pumps and overcoat, clasping my briefcase to my chest.

"Jacob, or Bert, or Henry—whoever we can get to first! Come on!"

Wait a minute, I think, jumping over ice patches. I volunteered to ride along for one article. I wasn't enlisting for life.

At a corner she slows to a stop and sights a bus bearing toward us from the distance. "Look! I knew we'd make it!"

"So this is what it is?" I say, catching up to her. "Whenever I see you, I ride the buses?"

"Iz
fun.
"

I check my watch. A student is expecting me after lunch, someone whose novel-in-progress I care about a great deal. Then I peer back at the skyscraper we left minutes ago, where I met with people who care equally deeply about Beth. A coldness rolls through me; it occurs to me that I couldn't assemble a crew who would know so much about me, and, should I be asked about my important relationships, I could no longer supply such a long list.

"You could
try
it," Beth says. "Just for a
while
"

The bus is one corner away. I know my student is eagerly waiting to show me his next chapter.

"I don't think I..."But Beth is giggling, perhaps in anticipation of the driver at the helm, perhaps in amusement at me; and my habitual refusal trails off into silence. Well, I consider, buoyed by her laughter, greathearted and wily at the same time, it
is
beneficial for her to see family under her own flag. I
could
stop feeling like a bad sister—stop fleeing from intimacy with this person I have known all my life—if only for one afternoon.

"Um, how much of a while?" I ask. "Like till three or four o'clock?"

"No-oh," she says, drawing out the word as if coaxing me to guess a secret. Then, as the bus swings toward the curb, she expresses her wish. "They see me
ev
ry year," she says. "So do it like me."

"What do you mean?"

"A year," she says.

"What?" I can't have heard that right.

She grins. "Do it for a year."

I look nervously at her. "
A year?
" That's two semesters of student papers up in smoke! Four seasons of newspaper pieces—twelve whole months of articles and authors and conferences and my comfortable bed and mornings that begin
after,
not
before,
the birds, and salads at a
table
instead of Ho Ho's on a bus.
A year
"You're kidding," I say.