Riding the Bus With My Sister: A True Life Journey (28 page)

"Once you learn it, though, you got to keep it in here." He points to his head. "So you don't keep learning the same thing every day."

Remember your lessons.

"But," Beth says, "iz not like that here."

Bert says, "New York's different. But one thing's the same. You still see how some people are lethargic and glum. Probably a lot of times they go through the whole day without laughing. That's why I do a little comedy, a little singing. If you can turn their switch from off to on, you're doing something right in this world."

His performance having successfully enlivened our excess minutes, Bert, emcee, headliner, and driver of the Time Point Club, flicks his wrist to check his watch. "Sorry, ladies and gentlemen, I must be going."

"Not yet!" a small boy yells.

"One more song?" Beth pleads.

"For you? Certainly," Bert says.

Somewheerrre over the raiiiinboooow,
Waaayyy up highhh,
That's where youuuu and I will goooo
And eat a box of big French frieees.

Then he returns to his seat and the audience disperses, cocking their faces toward windows and laps, isolated passengers once again.

"Bye, Bert," Beth says, jumping up at the last second, and scurrying down the steps. I grab my journal and follow, and at the bottom I look back up.

Bert is peering down to the curb. "Beth," he calls after us. "Beth." She stops her lunge for the next bus and glances up. And then, with an expression that manages to be both whimsical and sage, Bert pronounces the final and most important part of his code. "Beth, do the right thing," he says, flashing her a thumbs-up. Then he pulls the door shut and drives away.

"Beth," I say that evening as we're lounging on her love seat, feeling emboldened by Bert's master class, "remember how much you used to like having me tickle you?"

"Yeah?" she says.

"Do you want me to do that again?"

"Uh-
huh
"

She extends her arm, and I glide my fingernails over her skin. Then over her back. Then her calves. "So soon?" she asks when I inform her after half an hour that I've had enough. "Okay," I say, and continue. We don't have an argument all night. In fact, my dark voice seems to have curdled and died at long last, freeing me to enjoy my sister without reservation. Perhaps she feels the same, because when I put in her eyedrops she doesn't complain or push me away. Arm, back, calf: I tickle them over and over. "Dee-lee-shus," she says, just as she always did.

Well, shake it up, baby, now,
the car stereo blasts as we career down the city streets. Jacob, singing along with his tape as he floors his Nissan, shoots a look at Beth, beside him, and into the back seat toward me. Then he spins the volume off, fills in the lyrics, and whirls the sound back to high decibel level.

"Thiz what he did all the way to the
shore,
" Beth says. "Beatles.
On
and off,
on
and off."

"Sing with me!" Jacob hollers over the music.

Beth and I feebly mumble a line.

"Louder," Jacob says, circling the volume back off.

We up the ante a bit.

"Louder!" He laughs, cranking the knob.

The windows are open, our hair is whipping outside. Students on school steps with their book bags, touch football players in parks with their pigskins, grandmothers with overcoats and shopping carts—everyone on the street looks up as we blur past, twisting and shouting from our window.

It's fun, but we're not on our way to the shore. Today is the day of Beth's eye surgery, and Jacob, whose benevolence is inspiring me with awe, is chauffeuring us to the hospital.

I drove to Beth's apartment last night to keep her company and to ensure that she followed the doctor's instructions. She has a history of forgetting (or "forgetting") that when the doctor says not to eat or drink from midnight on, that means no diet Pepsi, no bagels, no chocolate pudding. And my presence was also likely to induce her to go through with the procedure and not decide the morning of the surgery that buses are more alluring than hospitals.

"You like this one?" Jacob says, screeching away from a stop sign, then amplifying the sound even more for "She Loves You."

Beth asked Jacob to come to the hospital. Incredibly, he agreed— without hesitation. So we're flying down strips of row houses, almost like an amusement park ride at the shore, which is how Jacob apparently wants it to feel.

"I'm
scared
of the
oparation
" Beth confided to me this morning.

Now she giggles beside Jacob in the front seat as we tear through the city. Then, louder than I've heard her sing in years, she yells with me at the top of her lungs, "Yeah, yeah, yeah!"

The doctor told me that it would take a corneal transplant to correct everything, but, since Beth's condition has left her eyes so scarred that her body might reject a transplant, and since she might neglect the crucial postoperative self-care, she really isn't a candidate for that procedure.

Instead, he's addressing the secondary condition by removing or redirecting her lashes so they will no longer grow into her eyes. This might, he says, ultimately help the primary condition.

It's an afternoon of surgery, after which we'll return to Beth's apartment. Then for the next two days, Beth is to lie down every two hours with ice packs on her eyes.

"But I
won't
" she announced repeatedly in the weeks leading up to the big day. "I want to ride the buses."

I could have been annoyed. Or I could have said, "Whatever you want," and stood back as she negated the operation with sloppy postoperative treatment. I suppose I would have, were I following self-determination to the letter. But I'm not convinced that Beth understands the notion of mortality or of
things going wrong.
I'm not even convinced that she sees time as I do, as she seems unable (or unwilling?) to acknowledge that the future could be drastically different from the present. This, in turn, might explain her dismissive attitude toward consequences. I don't know; but I emphatically do know that I do not want her to lose her vision.

I asked her, "If I hang out at your place for a while, will you stay inside for the ice treatments?"

"Maybe," she'd said, which sounded considerably better than "no."

So here I am, having shaken off my inevitable, irritable reaction:
I don't have the time.

And here is Jacob. Not just lending support to Beth, but also, though I didn't speak up or even tell myself I needed it, to me.

I assume that after he delivers us to the surgical wing of the hospital, Jacob will say goodbye.

But he remains with us into the parking garage, onto the sweeping entrance steps beneath the clock tower, up the slow-moving elevator, down hushed corridors to the waiting room. So it is we, not just I, who shake hands with blond Mary, the medical caseworker from Beth's service provider, who rises from the tan sofa to greet us, paperwork in her shoulder bag. A licensed practical nurse, Mary maintains medical records and accompanies people to their doctor appointments. Today she's here for both Beth and an older woman with developmental disabilities, who sits alone across the crowded room.

"You don't need to stay," I tell Jacob as we all settle in beside Mary.

He says, "I don't have to get back home for a while, and it's my day off."

"I'm nervous," Beth says.

It's the second time she's revealed herself. I look at her, surprised and impressed.

"I'll be with you," I say. "Don't worry."

"Hey, you've got your whole entourage," Jacob says.

She still seems scared, but her body relaxes, as if reassured by having us all there. I explain to Jacob who Mary is, and to Mary who Jacob is, as Beth eyes the other patient across the room. I don't know what procedure she'll be undergoing, but I note that she appears anxious, too. As Beth, Mary, and Jacob discuss his new puppy, I wonder if this woman is part of a family, like Beth, or if she was kept hidden in the back of the house. And why is she here on her own—have all her relatives died? Or was she sent away to an institution long ago, and now, finally released, found no one waiting because they'd forgotten she existed?

I later learn that many years ago, Mary took in a small child whose abusive mother had shoved her head into a wall. The resulting brain damage left the girl with cognitive disabilities. Mary and her husband raised her as a foster child, along with their other children. Now she's doing well, living on her own like Beth. The birth mother has never tried to get in touch with her.

Every minute, it seems that Beth lets down her pride a little more. Not only does she swiftly execute any instructions that the hospital personnel give her, she also requests that I join her in the rooms where she answers medical questions, gets her blood pressure checked, and is handed her hospital gown. She even inquires if I can remain at her side as she undresses.

Though this desire for my company is hardly an indication that she has retired her usual willful ways. We pad through a hall to the ambulatory surgery unit, where Jacob and Mary are waiting for us beside Beth's gurney. "I'm not used to these
wee-ard
shoes," she says. "These clothes feel funny." And, as I draw the curtain around the four of us so she has a little privacy from the other patients in the room: "I need to go to the baffroom."

"You just went to the bathroom," I say.

"I need to go a
gain.
"

"Okay," I say. "I'll take you."

She says, "I'm gonna run away when I go to the baffroom."

We all look at one another. Jacob says, "You can't run away. You have to do this."

"I
will.
I'm just
saying
I have to go to the baffroom. I'm really gonna run away."

But her voice is playful. I suspect she's expressing a wish, not an intent.

I escort her to the lavatory down the hall. She doesn't even look for the exit sign.

The next step is getting her to lie on the gurney. "You have to lie down to get operated on," I say.

Still playful: "I
will.
"

"You need to do it now."

"I'll get
around
to it."

I climb onto the gurney beside her and lie down. "Do it like me."

"I'll
do
it."

"Now."

Finally, with Jacob and me coaxing, she lies down.

Then a man comes over with the dreaded knockout shot.

"You have to turn over so he can get to your butt," I say.

"I don't
want
to."

"You have to."

"I'll do it when I'm ready."

The man—a nurse, doctor, who knows?—gets that fuming look on his face that I've felt so many times on my own.

"Turn, Beth," I say.

"I'll get to it."

I look at Jacob. We seem to agree, without even speaking, and together we heave her onto her side as if we're turning over a boat. She's laughing, enjoying the attention. The man jams the shot in, and we let her roll back, and then her fight is over.

It stays over as they put up the gurney side rails and wheel her toward surgery, and I walk along beside her. It stays over as I sit on a stool beside her in the holding area, where the drug begins to take effect, and where I reach across the rails and tickle her arm while we wait.

There, in this quiet corner of the hospital, stroking her skin, I look into her eyes. They are so scratched and foggy, so hard to see inside. Yet in this moment, they are also stripped of all her defiance and foxiness and mischief. She looks at me with a fullness of trust that I seldom see.

And something happens: the ice in my heart starts to melt, and I feel a rush of love pour in. The sensation warms and surprises me, and I wonder if she sees astonishment in my eyes. She can't see much anyway and, besides, she's drifting off to sleep. But somehow I'm sure she knows.

Later, Olivia tells me, "As a professional, if I had been there in the hospital, and Beth had wanted to run away, I would have said, 'Okay.' And if Beth had said she didn't want the shot, there is no way I would have gotten beside her and pushed."

"Well, but ... what would you have
done?
"

"Tried to convince her, and ensured and documented that I'd educated her about all the benefits of the surgery, and done everything I possibly could to inform her of the consequences. If this were a life-threatening illness, the CEO of my company would make a decision, which might mean that she'd get that surgery no matter what, even if it was forced on her. But since this particular medical problem wasn't life-threatening, if Beth didn't want the operation, she probably wouldn't get it."

I keep my mouth shut. I would like to be as laissez-faire as she is.

And yet. That's all I can think. And yet.

For the required two days afterward, Beth agreeably does everything the doctor asks: Lies calmly beneath the ice packs. Accepts ointment in her eyes. Allows me to wash the caked-on blood from her painful lids.