Riding the Bus With My Sister: A True Life Journey (37 page)

"Well, I'm having some photos we took that day developed. Do you want any?"

"That's all right. I don't need none."

"You sure? I can easily get some extras."

He sighs, and his voice goes quiet, and he says, "See, I ... I don't know if I can look at pictures about her. They make me sad."

I look at him and know he's serious. "Why?"

"It's like somebody being all by theirself. Even when the pictures of her are not that old, or even when your sister and brother're in them, too—it's just, they make me think about when they first put her where she lives now, and I visit her and then she takes me down the elevator later and I leave out. And what I do is I look back, and she's waving her hand, and it seems like a bye when the person knows you're not coming back no more. And I was coming back, but that's how she looked, and that got fixed in my mind. So now all pictures of Beth make me think of her being alone. She gives me photos, but I look once and stick 'em in a drawer. I don't know why. It's just a feeling I get in my mind that I got to overcome, I guess."

I don't know what to say. We sit in the raw January day, I in my car, he on his bike, clouds hugging the sky above us. "You're a good man," I say finally.

"Yeah? Well," he says, and looks down at the ground.

There is no sound but the fan from my heater. Finally he says, "I try to be. I don't like to be the bad guy. It cause too many problems. My mom taught me that you just do your best on this day, and then see what the next day be like, and keep moving like that."

"That's a good approach to life," I say.

"You can learn a lot in just one day," he replies.

"I'm seeing that," I say. "Look, I'll probably see you tonight, after we finish riding, okay?"

He gives me a funny look I don't understand, then says, "Yeah."

I reach into the cold air, and we shake hands goodbye.

I drive toward downtown, thinking of all I don't know about Beth. After sharing bedrooms, buses, Donny Osmond, and thirty-nine years, I don't know the melancholy that Jesse sees. I've long suspected it, but she almost never allows it to show. She is my sister, and I remember tossing grass cuttings under the house with her when we were little, and singing about "The Impossible Dream" in the car with her when she was learning to name tunes. I remember the tearful ride home from La Guardia. I've always figured there must be some grief in her heart, but I don't see the things that she censors. What she
must
censor, I correct myself, as we all do when we grow up and make ourselves distinct from our families. I love her, and at last I believe that she loves me too, but I know that in her eyes I will always be the big sister. It is both my bridge to her, and the moat eternally between us.

I am coming down the mountain now, cruising past the row houses, the park with the fairy-tale castle. I must pass through the city to reach a mall, and when I take the left from the ridge, Main Street opens before me like the central aisle of a temple. I glide down its graceful slope. Past Tenff. The used furniture shop. Eighff. The farmers' market. I coast along until I must stop for a light. Fiff and Main. The eye of the universe.

I think about all the times we waited here, hitching ourselves to one of these shelters regardless of the weather. I look out, from corner to corner. Then I see Beth.

She is standing near a bus bench in her purple coat and orange slacks. Only, I realize as I focus, she's not merely waiting. Her arms are up, her legs are bouncing, her hips are shifting. She is dancing.

I roll the window down to say hi. That's when I hear that she is singing, too, accompanying a hip-hop song on her yellow radio. People in the nearby bus shelter ignore her, making it clear that they've already seen this routine many times. She ignores them, too. She's the Carmen Miranda of the corner, shimmying and shaking and spinning and stomping. She is Cool Beth, and I didn't even know she could dance.

The light changes and I roll up my window and move on without calling her name.

"Bagels, anyone?" I offer.

"Got another chair?" Mary asks.

"Man, look at that cloud," Olivia says, pointing with her chin toward the window in Beth's apartment. We turn, all five of us, as we continue peeling off our wet coats. The storm arrived just as I parked on Beth's block, and now I see its source: an enormous rain cloud crawling like a cougar down the mountain, pawing swiftly across the valley.

We are meeting for Beth's annual Plan of Care. Unlike last year, she's requested that we gather in her apartment, and also unlike last year she's sitting on the edge of her seat, already impatient to catch a bus. Vera is not with us; she had a minor stroke last week. Beth went to see her yesterday in the hospital, bursting in at seven
A.M.
, handing the tired but pleased patient a card, then hustling back to the bus by seven-fifteen. In Vera's place we have Amber. She no longer works with Beth regularly, but is filling in for Vera as best she can.

Vera's absence concerns us all, and scares me. As we admire the photographs of Beth's short-lived metamorphosis over the holidays, I drift off into the maybes, the down-the-roads, the inevitables. Eventually, I know, these professional caregivers will all get ill, or promoted, or will burn out. Or they'll retire. As they set their paperwork on the table, I have a flash of panic. What will we do then? Where will Beth be without Mary taking her to doctors? Where will I be without Olivia to turn to?

I take a deep breath to calm myself. I will simply adjust when the time comes. It won't be impossible, because I now understand what they're doing, and I'll have the drivers to turn to. And last week I started seeking out some sibling support groups. There seem to be few out there, but the one I've found online, SibNet, includes people who share my feelings on so many levels that I know they'll help me sort through what to do when the what-ifs happen.

Then I think, I may die before Beth, and I shudder to imagine leaving her behind. If we are lucky, someone else in the family will still be alive and will have made peace with her and her lifestyle by then. If we're not lucky, Beth will be fully on her own. That is, on her own with Jesse and the drivers and the system and whatever extra funds I've left for her in a special needs trust. It's a trust I finally created last week, when I sat down with a lawyer and said, "I'm forty, and I have this sister. I have to start planning for what-if..."

Now I think, What if she does outlive me—and outlives everyone we now know? What if no one is here to clean her eyes? What if no one is here to tickle her legs?

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 re
mem
ber."

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
hap
pen"

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.