Riding the Bus With My Sister: A True Life Journey (2 page)

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.

At the time, I thought I had my life under control. In addition to having published several books, I was teaching college as well as holding classes for private students, writing free-lance commentary for the
Philadelphia Inquirer,
and hosting events at a bookstore. I adored everything I did, which is more than many of my acquaintances could say.

But, though I wouldn't confess it to myself, I worked all the time. Seven days a week, from the minute I threw off the covers at seven
A.M.
until I disintegrated back inside them at one
A.M.
, I leapt like a hare through my schedule: Write article → Grade student papers → Interview newspaper subject → Book author for store signing → Teach private class → Take notes for next novel → Eat → Crash.

My life, I told myself, bore little resemblance to the lives of workers in corporate America. After all, I made my own schedule and wore comfy leggings and sweaters at my desk, saving the A-line skirts and blazers and lipstick until I drove out to class or the bookstore. To unwind, I took vigorous walks whenever I pleased, keeping my five-foot build lean and fit. But who was I kidding? I was like most of my peers: hyperbusy, hypercritical, hyperventilating.

As a result, I bricked in all the spaces in my week when I might have seen friends, and so it followed that I lost many of them. I lost my opportunity to indulge in almost all leisure activities as well: no movies or plays, and, though I continued to purchase new novels and routinely carted home any intriguing texts I found on the "Take Me" shelf at school, dust settled on the pages like snow, as I had time to read few books beyond those I needed for my work. But perhaps the greatest forfeit was love. I'd had a few awkward dinner dates in the four years since my longtime live-in romance had come to a mutually tearful and reluctant end, and even those strained opportunities had petered out. Alone in my apartment in the Philadelphia suburbs, dining at my desk most nights, I occasionally browsed the personal ads. But then I'd open my datebook, remember that I had no time to meet for coffee, and turn back to my work.

This had not always been me. Until I found myself single, my evenings had been filled with dinner parties and art openings and reading groups and two-hour phone calls with my girlfriends. That is, when my nights weren't already occupied by relaxed conversations on the sofa with my boyfriend, Sam, where we'd go on about books and politics and the seductive lure of the Big Life, our exchanges interrupted only when he'd get up to flip through his voluminous record collection, then set the needle on recordings by, maybe, Miles Davis, or the English folk musician Nick Drake. I don't know when things stopped working for us; I just know that when he asked me to marry him I could not bring myself to make the commitment. Finally, in a blur of grief and regret, convinced I should let him move on with his life, I left. I took only my necessities—computer, desk, and clothes—and camped out in one cheap rented room after another while I tried to make sense of my life, and of what seemed to be a stony heart. It didn't help that for years I had subsisted on Sam's architect's salary, plus my writing jobs, and now, in one of those unnerving coincidences of fate, they suddenly dried up. Those first few months on my own, I was so lonely and broke that my stomach would seize up during the night and I'd wake on my air mattress, clinging to a pillow, and lie awake until morning. During the day, catching my reflection in my computer screen and seeing only failure, I'd feel my face tighten with terror.

Finally, I accepted a job at a bookstore, and, as luck would have it, started publishing at the
Philadelphia Inquirer.
Then, marveling at the dollar signs sprouting in my check register and discovering that with each newspaper column and wave of bookstore applause I felt myself on my way to the Big Life, I accepted positions teaching as well. I rented an apartment and purchased a bona fide bed, but did not acquire a stereo or TV, as I hadn't missed either enough to replace it. And I worked. I worked until I was so exhausted I fell back asleep easily when I woke during the night. I worked until I forgot I was lonely, until I could not conceive of any other existence.

I hadn't seen Beth in a couple of years. We stayed in touch through letters; once a week I'd scratch out a card, and in return she'd cascade fifteen back. Her letters consisted of two or three multicapitalized sentences sprawling down the page, sprinkled with periods, which she'd then fold into envelopes flamboyantly tattooed with stickers and addressed in fall-off-the-paper print. I relished finding these treats populating my mailbox, whole colonies arriving in a single day. In Magic Marker scrawl, they gossiped about our younger brother
(I aM Glad that. Max got a new rED car. when he Came with his kids. good)
and older sister
(Laura sent Me. a gift Thing for WAlmart),
educated me about the latest Top Ten
(Do you. like In Sinks J want you back. J do),
and revised my knowledge of Jesse's athletic achievements
(Jesse did do that big race. WoW).
Best of all, they climaxed in a spunky declaration that defied the world's cliché of her as an uncomplicated half-wit, signed as they were, "Cool Beth."

But when I phoned her occasionally, the conversations were clumsy and joyless. She never volunteered information about herself, and when I divulged meager scraps about myself, she made no effort to respond. This combination of guardedness and lack of interest annoyed me, as it did the rest of the family, and like them, I didn't know what to say or ask. After "Hello," our dialogue rapidly disintegrated. Finally, resorting to the I'm-the-older-sister-you're-the-little-sister pattern I knew so well, I'd offer blandly, "Did you hear about the Ninja Turtle mug giveaway at that fast food place?" "How was your talk with Mom?" These queries would allow us to trudge ahead for a few minutes, Beth scattering monosyllabic crumbs in my direction, me telling myself, Okay, it's boring, but it's brief. When we got off the phone, my shoulders would be as rigid as if I'd just marched into combat.

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.