Riding the Bus with My Sister: A True Life Journey

by Rachel Simon

  But I know that Beth, in her own rebellious way, has spent her life learning how to adjust. And I think, My death won't stop her. A typhoon would not stop her.

  "Finances," Olivia says, introducing the first topic.

  The same.

  "Teeth?"

  Beth's new dentist, exceptionally experienced with patients who have special needs, pulled two. "Uterine fibroids?"

  The gynecologist is still monitoring them.

  "Cough?"

  The doctor gave her an inhaler for this recently persistent problem, but when Mary asks to see it, we discover that Beth isn't using it correctly.

  "Eyes?" Though the operation was a success, there might be more trouble to come; in one eye, a few lashes are stubbornly growing toward her cornea once more.

  Throughout the meeting, there are again tense brows and exasperated slumps, and even though I keep looking at Beth and seeing the joyous dancer on the street, I find myself sharing in the worries. Perhaps even more than last year, Beth seems to be neglecting self-care and ignoring consequences. She says she doesn't want to meet Mary at the pharmacy to pick up prescriptions anymore, even though, Amber points out, that's why she's using the inhaler incorrectly. "I don't want to miss the bus" She insists she wants to take care of her own eyedrops, though Mary notes she's been unable to manage that before. "I do it when I remember."

  This back-and-forth goes on awhile, Beth shooting looks at her wall clock. I watch everyone, seeing that you can believe in self-determination, and offer choices, and point out the fallacies in her reasoning, but if Beth doesn't want to be cautious with her meds, her weight, her money, or even with giving this once-a-year meeting the time and attention it deserves, then all you can do is hope her love of life will someday nudge her toward noticing there's a future, and hence altering her behavior accordingly. More than once the three professionals disagree among themselves—"I won't let her throw her money away on that," one says at some point, to which another jumps in with "Let her? Whose money is it?" They keep haggling over the details. She keeps inching toward the edge of her seat. They keep negotiating about how to give her the assistance she needs while adhering to the principles of self-determination. She keeps asking, "Are we done?" And when they pose potentially troublesome medical scenarios to her: "Thaz not gonna happen"

  Yes, they are professionals, I see, but, as I deduced about Vera months ago, they too are struggling. We are in an age of new rules, and no one quite knows how to use them.

  "Look," one of them says finally with a sigh, "I think we should just leave things where they are with Beth."

  Another responds, "It's her life."

  They lower their heads to their papers and bagels as Beth steals a glance at her coat. And though it pains me to acknowledge, I know they are right. I also know that I will always wrestle with the notion of self-determination, debating again and again when and how to help—and even if I should.

  "Okay, honey," Olivia says. And then, initiating an exchange I've heard before, she asks, "Tell me, what are your dreams for the future?"

  "To go to Disney World with Jesse," Beth replies, replicating her response from last year. "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. I like not working. Thiz fun"

  Beth jumps up to leave—Melanie's bus passes by in five minutes, so the meeting has come to an end—and as we throw on our damp coats I know that, once again, the report will say: "Beth does not wish to change anything."

  But that doesn't mean that nothing has changed, I think, as all five of us cram into the small elevator. Beth bangs on the button for the lobby, already giggling in anticipation of our rendezvous with Melanie, unconcerned about needing an umbrella, though we're about to return to the storm.

  I am standing next to Olivia, and, as Beth goes on about Melanie and Cliff and the rest, Olivia and I exchange a look. I think her look says, I know this isn't easy for you. But I hold onto her turquoise eyes, grateful that someone understands, grateful that someone cares about Beth, and me, and as the elevator slows for the lobby she says quietly, "Don't worry. We'll be here."

  "Look, the rain stopped," Beth observes, leaping toward the glass vestibule.

  She's right. The four of us straggle off the elevator into a shaft of sunlight.

  I peer back at Olivia, Amber, and Mary. "Thank you," I say softly, my voice sounding oddly hoarse to me.

  I spin toward the door. Beth is hitting the buttons to get out, and as she rockets onto the street, squealing as if suddenly liberated, I turn back to give them all a quick hug, squeezing Olivia the tightest. Then I race out of the building after my sister.

  "So where're we going, Beth?" I say when I reach the sidewalk, speeding along behind her toward the corner. "Melanie, and then who? Will I see Rodolpho? Estella? Who's this new driver you keep mentioning, Nino? What songs do you and Melanie like now?"

  She says nothing until she reaches the corner. Then she wheels around in the brilliant light. "The year's over" she says.

  I stop dead, breathless, and look at her. I should have remembered, and Jesse's odd look should have reminded me. I'd been desperate at times to reach the end of the year, but I'm not desperate anymore, and I'm surprised and a little dismayed that she is sticking so exactly to the deadline.

  "You don't want me to ride anymore?"

  She shrugs. "I don't kno-oh"

  We face off, and as we stand there, eyes locked together, her expression goes through a lifetime of phases: defiance thawing to longing, longing toughening to indifference, indifference ripening to affection. I can feel emotions washing across my own face, too: sadness and muddlement and testiness and caring. I can feel us breathing together.

  "There's Melanie!" she says. She points up the hill, once again giddy.

  The bus sails across the intersection toward us, Melanie waving from inside.

  "You coming?" Beth asks, waving back.

  I consider what to say, as the desire to share more time with her bumps up against my need to return to my own life.

  "So?" she says.

  I pause, and finally exhale, "You can go without me."

  A look flits across her face—disappointment?—but before I can figure it out, the bus squeaks up to the curb and she has swiveled around to greet it.

  Melanie is smiling down at us, reaching toward the lever for the door. My throat feels heavy, and I touch Beth's shoulder. "I hope that's okay," I say.

  She turns back, and whatever expression had crimped her face a moment ago is gone. Now she is shaking her head from side to side.

  "What?" I say.

  "You're wee-ard" she says.

  I can't help it; I laugh. "Well, sis," I say, "so are you."

  The door opens. She steps toward it, and glances back to me. "Wee-ard," she repeats, and then, also laughing, she adds, "but you're cool, too. Sometimes."

  Then she reaches for the railing and hauls herself in.

  I stand on that corner for a long time. Too full to move, too empty to think, watching the bus pull slowly down the street until it is swallowed by the distance.

  But when I finally climb into my car, it seems to know just where to go.

  In the afternoon light, I drive across the city once more, making the turns the buses have taught me so well. Up this hill here, down the fork there.

  Then I park across the street and look up to his third floor. That's the room where his pool table is located. The light is on. It must be his day off—and he's home.

  I cross over to his house and ring the bell. He opens the door and, when he sees me there, he smiles.

  "My buddy!" Rick says. "But I thought your sister—"

  "Well, we were done. I could have gotten on the bus with her, but I decided not to." I pa
use. "Are you free?"

  "For you, any time," he says.

  We stand there in the surprising sunlight and shift our weight on his front step, neither of us knowing quite what to do. Then he says, "Hey, let's go for a drive." "How fitting," I tease. He grabs his coat and we get into his car.

  "Where to?" I ask when he turns on the ignition.

  "Everywhere," he says.

  We drive and drive, and talk and talk. In the car with him, with the wind rushing by the windows, I forget about being a Somebody, or a perfect sister. I am just a woman in a car with a man, and we are making each other laugh.

  Late that afternoon, as the sun is setting over the valley, he takes me up to the top of the wooded mountain. For a year I have seen this mountain from Beth's buses, and thought I was near the peak many times. But I was wrong; I'd never quite gotten to the top. I see that now, as Rick pulls up to a secret lookout spot he knows. We step out into the dusky violet light and face the wide valley below, a slice of moon hovering above us.

  "Look at this," he says, holding out his arms toward the city. "Isn't it an amazing view?"

  A hundred streets, a thousand streets, crisscross one another in the dying light. But 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. Or a bus with someone who is somehow, in ways he doesn't even know, like her. Then I look to the north and I see another bus. And 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.

  "Isn't it something?" he asks.

  "It's beautiful," I reply.

  He puts his arm around me, pointing out the sights. The air is growing cold and darkness is coming fast. We huddle close to each other to keep warm.

  A year and a Half Later

  The Miracle Maker

  At three o'clock on this May afternoon, as sunlight spangles my bedroom, I stand in my slip before the mirror, in a daze of disbelief. It's not the fragrance of roses in the room that has cast a dreamy spell on me. It is that I suddenly realize that this moment is real.

  Blinking myself back to alertness, flicking a look at the clock, I reach for the hanger, hooked over the wooden frame of the mirror. As I lift it up, a card that I'd stuck in the corner of the glass flutters to the floor. I crouch down to retrieve it, a Day-Glo burst of stars and exclamation marks against an orange background. I remember how pleased I was when I received it and open it now for one more look.

  to, Rachel,

  Hi. I aM. SO happy. For You.

  Cool Beth and Cool Jesse too

  (also signed by)

  Bert—best wishes

  Len

  Good luck!—Jack

  Melanie—Best wishes to you

  Congrats—wish you the best—Happy Timmy

  God bless—Estella

  Good for you—Bailey

  Years of happiness, your friend, Henry

  Marco

  Wow to ya—Karl

  May many happy and prosperous adventures be with you,

  Love, Jacob

  I gaze at these signatures, executed in their handwriting with her purple pen, and think of the year and a half that has passed since my last ride with Beth and of how so much has changed. Happy Timmy's third child was born. Jacob's health ebbed and flowed, but he held on. Often, when I came to town on Sundays or weeknights to visit Beth, sometimes meeting at the bus terminal parking lot so that, just as the buses docked in the garage for the evening, she could introduce me to her newest fellow traveler, Jacob would invite us for dinner or a car ride to take in the Christmas lights. I wondered if I might see Rodolpho, who settled down with his sweetheart, then left bus driving behind to enter the police academy. I never did, though I often ran into Estella in the dispatcher's office, or Bailey in the drivers' room, or saw Henry's wide-armed wave hailing me from a passing bus. Jack did not find his long-lost love, nor did he shift from his independent ways. Bert, inching toward retirement, cut back on his driving. Cliff, to Beth's dismay, quit to become a car mechanic. She mourned for weeks, especially after she sent him a heartfelt letter wishing him well and he never responded. "Thaz life," she told me, first with a sigh, then a shrug. Rick moved on, too, becoming a driver for another bus company that made long runs to distant cities. Melanie continued to drive.

  But those were only the headlines. The more important stories lay deep inside Beth, sometimes too deep to find their way into letters: new affections, new end-of-the-line confessions, sudden downshifts in tolerance for her companionship. Throughout it all, I listened if she chose to share and offered comfort when she wanted it. Jesse steadfastly did the same. When, near the end of these many months, she had to return to the hospital, this time for a hysterectomy to eliminate the uterine fibroid problem, she sought my comfort, though once again I was only one of the people she relied on. Olivia, whose recent promotion beyond case manager had not prompted Beth to curtail her morning weather calls, phoned often, as did Wendy, who replaced Olivia. Vera, now healthy again, stopped by the hospital. Drivers old and new sent cards. Jesse sat at Beth's side while she slept, talking to me about how to take it as it comes in life. And Dad invited her to recover at his house after the surgery, and cared for her day and night while her scar healed.

  But the biggest change has been my own, and on this brilliant spring morning sixteen months after I climbed the mountain with Rick, I know that it would never have happened had I not spent my year with Beth. It was she whose very presence caused the ice around my heart to thaw and who nudged me tenaciously to find the courage to go out with a man again. Rick's kind ways and fondness for me stirred me further; in the special friendship that ensued, I had let myself care. Beth's wish to have a driver as a brother-in-law has not come to pass, but through our Scrabble games in Rick's living room and our walks on rainy golf courses I came to want a different life for myself—and, for the first time, believed I was capable of having one.

  This is what I am thinking, as I rise, set the card on the bed, and step into my wedding gown. I am forty-one, and, today, by incredible coincidence, Beth and I became twins again. As I stand in the bedroom, adjusting the shoulder straps of my cream-colored dress, I glance outside, down to the yard of the house where I now live with Sam: a house to which I moved last week as a fiancée and to which I will return tonight as a bride. He is waiting for me in that sunlit yard, ablaze with indigo and cranberry-colored flowers, and I know, were he to look up and glimpse me in the window, he would smile in his loving way and mouth the words we have been saying to each other for the past ten months since I called him—this time not hanging up—and we began a surprising and wondrous courtship: "It's a miracle."

  I step back from the window, and then I hear, blocks away, a city bus passing in the distance. I am no longer scared, I think. I do not feel cold. I lower the veil over my face, over the same hair and eyes and—at last I can admit—love of life that I share with Beth. Then I reach forward and open the door.

  * * *

  Acknowledgments

  The material in this book was derived from my observations and memories and from interviews with people in Beth's life. I am deeply grateful to the bus drivers and to the many others at the bus company who provided me with information. I also could not have gone forward with this project without the warmth and insight I received from Beth's service providers, both those who appear in these pages and their colleagues behind the scenes. Special thanks go as well to the members of my family,
whose recollections helped me broaden and sharpen mine, and who have courageously allowed me to tell our story.

  In addition, I am indebted to the friends, coworkers, people affiliated with the field of mental retardation, and readers whose literary insights, patient encouragement, comic relief, and late-night brainstorming kept me on this sometimes bumpy path: Susan Balée, Amy Burns, Angela Capio, Connie Falcone, Bethany Gorney, Patricia Hamill, Marshall Hill, Sharon Klepfer, Fran Metzman, Diana Myers, Kristine Nilsson, Sherina Poorman, Kathy Ramsland, Betty Randolph, Lari Robling, Alice Schell, the many participants on SibNet, Michael Smull, Joy Stocke, John Timpane, and David Tucker. I am particularly honored to have encountered Anne Dubuisson, a lucky happenstance orchestrated by Justin Cronin; had it not been for her compassionate tutelage, I would not have embarked on this journey, nor could I have lifted myself as deftly out of the occasional rut. I appreciate too the historians, linguists, and writers who provided background on the region, including Troy Boyer, George M. Meiser IX, Dr. Eugene Stine, Nancy A. Stine, the Pennsylvania German Cultural Heritage Center, and the Pennsylvania German Society. And an uppercase Thanks to Jayne Yaffe Kemp, my superb manuscript editor, for her meticulous eye and cheerful demeanor.

  I will always marvel at the remarkable fortune that delivered me into the hands of two of the most indefatigable, perceptive, and generous spirits I know, Elaine Pfefferblit, my editor, and Anne Edelstein, my agent. One might dream of such devotion and diligence, as well as astuteness and optimism, but to find all these qualities in one's closest associates at the same time is one of life's rare gifts.

  And the Number One thanks on this Top Ten list goes to the Purple Sheriff, who opened her life to me.

  I feel blessed to know all of you.

  * * *