Riding the Bus with My Sister: A True Life Journey Read online

  Sometimes she'd call collect. "Iz my birfday. Can you visit?" Or "Iz nice out. Come over." But she lived hours away, in a city I didn't know my way around; I'd already been long out of the house before she'd moved to the area with our father. Endure both geographic confusion and labored communication? "Sorry," I'd say. "I can't."

  Besides, she did this ... bus thing, and, like the rest of our family, I found it difficult to accept. Some days its sheer oddness baffled me; other days I was disheartened by her choosing to master bus routes over sticking with something productive like a job. I had long embraced eccentrics in novels and cheered on iconoclasts I encountered in newspaper stories, yet I was too dismayed by Beth's peculiar devotion to the buses to be willing to acquaint myself with her life. In fact, I had rarely even admitted it to friends and colleagues who, once they learned that one of the three siblings I'd mentioned had mental retardation, seldom asked anything besides whether she had Down syndrome (no) and what her "mental age" might be. 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. When I was unable to supply her "mental age," they'd ask whom she lived with, even if I'd already told them she lived on her own. It would become clear to me then that their understanding of mental retardation had never moved beyond the stereotype of the grinning, angelic child. This exchange was so routine, and had been for so many years, that my dismay had long ago dissipated into acceptance, and with that had come the realization that I would always hover between two worlds, with mental retardation over here, "normal" cognitive functioning over there, and that I would have to convey information from one to the other, never quite belonging to either. 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.

  In letters or on the phone with Beth, I sought to ignore her deepening allegiance to the buses by focusing on practical matters. Has KFC had any openings since they laid you off a few years ago? Would you like help obtaining a library card? She communicated her resentment with sullen "I don't know"s or a silence as deep as sleep.

  So for years I essentially let her become a stranger. Though sometimes at night, when I was at my desk and happened to glance outside and spy the moon saluting from above the treetops, I'd remember how fascinated she'd been by it when we were kids. Sitting at my desk, I'd shake my gaze away from the window, but moonlight would still illuminate my papers. Her stickered letters glared up at me, as the guilt of being a "bad sister" once again reared up inside me.

  Then one winter morning when Beth was thirty-eight and I was thirty-nine, and I was too exhausted from my daily triathlon to come up with an idea for the newspaper, I mentioned to an editor that I wanted to visit Beth for the holidays but was, as always, perplexed about how to negotiate the dilemma of her buses. "Say what?" he said, and, embarrassed, I explained. "How interesting," he said. "Take a day to ride with her, and write it up for your next piece."

  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.

  I wrote the article, and as soon as it appeared it created a stir. Postcards and e-mails arrived from strangers; acquaintances flagged me down in the bookstore to shake my hand. Beth was tickled: people were paying attention to her and her beloved drivers. The piece was picked up by papers all over the country, generating a tide of enthusiasm. I kept calling to tell her, and we started talking more. Her letters, which soon poured into my mailbox in even greater numbers, felt all the more special. I finally knew what to ask, and now she wanted to answer.

  Yet I was too busy to dwell upon the pleasure the article's success gave me. Actually, I was too busy to let myself feel much of anything: One day when throwing clothes into a suitcase during the ten minutes I had allotted to pack for a business trip, I glanced outside. A neighboring family was playing together on that mild winter afternoon. There, beside a tree swing, stood the dad—not a Big Person with a Big Life, but an unassuming person with a richly quiet life—as each of his four children lined up for a push. I started to smile as I zipped up my bag, but discovered to my horror that the muscles in my face no longer seemed to work. That night, I lay in my hotel bed in a chill, suddenly unable to keep my loneliness stuffed inside its cage. What if my breathless daily grinds led to only more breathless daily grinds? What if I closed the door forever on human connection—never again shared a relaxed afternoon laughing with a friend, forgetting to look at my watch? Or spent a day, a whole day, simply enjoying the company of a man? What if work was it?

  A few days later, hurrying through my mail, I came upon an envelope from one of the agencies that works with Beth. I opened it to find an invitation to attend something called her annual "Plan of Care" review.

  I held up the letter to reread it and slowly comprehended its significance: Beth had asked that I be included. In the eleven years since she had left home, this meeting—which I'd been vaguely aware of through the report that gets mailed to each family member, and which seemed to cover matters like finances and health—had been attended only by her aides, not family. But clearly, my ride on the buses had meant a lot more to her than just a few words in a newspaper.

  I flipped open my datebook. The January day was not ideal, but if I canceled this and rearranged that, I could manage it. I called to RSVP: "Yes"

  On a brisk January afternoon, while last week's snow still dots the streets, the mirrored elevator zooms me toward the eighth floor of the agency's skyscraper. As the numbers light up—4, 5—I wonder what to expect. The elevator feels leathery and professional, a part of my world, and with a catch in my throat that falls somewhere between caution and excitement, I know that as soon as I emerge, I'll be in a land of rules and people I don't know—6, 7—and will feel as cloddish and bewildered as Alice emerging from the far end of the rabbit hole.

  The doors open, and Beth is standing before me in the marble corridor.

  At four feet ten, with unzipped regal purple coat, buttercup yellow pants, and an oversized orange marmalade Eeyore T-shirt, she cuts a grand Day-Glo figure in this corporate environment. Although Beth looks like the rest of our family—brown eyes, curved nose, brunette ringlets, squirrelly cheeks—you immediately know when you first see her that she is different in some way, given her unique fashion sense and her loud and spirited manner. "Hi," she says.

  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 m
ade 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 princi
ples, 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.