Splinters of Light (14 page)

EXCERPT,
WHEN ELLIE WAS LITTLE: OUR LIFE IN HOLIDAYS,
PUBLISHED 2011 BY NORA GLASS

Father’s Day

When Ellie was little, Paul bought her a chemistry set. I thought she was too young. She was only nine, after all, and some of the chemicals were labeled corrosive or acidic. One was even toxic. I pictured her adult hands pocked with scars from a childhood chemistry accident. But Paul had a chemistry set when he was young, and he had clear memories of the way cells had looked under the glass. He’d loved the power of it—suddenly, he said, you were God, and everything on the slide was a world you’d invented and you controlled.

Of course, I told him he was wrong. If I knew one thing, I knew I controlled almost nothing. That was the year of things that crapped out—my old Civic blew its head gasket on the way home from Costco, the washer threw a hissy fit and flooded the kitchen, the refrigerator started smoking like a Vegas stripper, and the furnace wouldn’t heat the house above subglacial temperatures. Paul, in the meantime, had a newish wife, a tract house with the tags still attached, and a cell phone that magically never rang when I called. (
Sorry, must have been out of range again.
)

For Father’s Day, Paul sent Ellie the chemistry set.

She’d opened the package and then stared at it. I thought maybe she was scared of it, as I was. But it was my job to ignore that, to push the fear into the pocket I’d made in the lining of my soul, right between my ribs and lungs. “Oh, isn’t that fun,” I said, but I knew I had to do better than that. “Your dad loved his old set. He blew things up with it.” He hadn’t needed a chemistry set to blow apart our family.

Ellie had looked confused. “But I thought I was supposed to get Daddy something for Father’s Day. Not the other way around.”

We’d been planning on making the drive out to Modesto to see him that Sunday. That was my gift to him, as the father of my child: to deliver to him the daughter he couldn’t
quite
find the time to see on a monthly basis. But then he’d sent the gift (Friday overnighted, express Saturday delivery) with a note that said, “To My Best Ellie, Happy Father’s Day from Your Pop.” I got a text that said,
Sorry, Bettina made plans with her folks, kiss Ellie for me.

“This is
cool
,” said my daughter. She took the box to the shed, a small room attached to the garage that smelled perpetually of putty. It had been Paul’s workshop, where he kept his wood tools and saws and routers. I didn’t go there often. But Ellie loved that little space. “Don’t come in, Mama. No, come in an hour. I’m going to experiment until then.”

Sixty minutes later, I found Ellie sitting on the little blue chair in front of the microscope, a bloody tissue pressed against her finger. Her smile was radiant. “Mama!” she said. “Give me some of your blood. I’m going to see if we’re related.”

I didn’t ask a single question. I just used the same safety pin she must have stolen from my sewing box to stab myself. She pressed my thumb to the glass slide. We spent the next hour watching our blood cells squirm and wriggle, comparing the shapes we found to the other slide.

Eventually the cells slowed. “They’re dying,” Ellie confided.

I shrugged. “It happens.”

Ellie nodded gravely. “I wish I had some of Dad’s blood.” She looked at me hopefully. “Do you have some?”

“Not on me, no.” I was only a little disappointed.

“Oh.” She looked devastated. “Then I could have seen that we’re related.”

“Trust me, kiddo. You are. Besides, how can you tell, just from looking at the way our cells move?”

She pointed at the eyepiece. “I can see parts of the blood that dance the same, but that’s normal. You’re my
mom
. With a dad I bet it’s different. I just wish I could test it, that’s all.”

I was both tickled and dismayed. I was Mom. I was unnoticeable, an extension of her body, a part of her brain. I was normal. I was just me. Paul was practically a mythical creature, someone who blew through Tiburon on his way to occasional meetings in the city, dropping off gift certificates and promises that almost—but never quite—got fulfilled. But Paul’s was the blood she wanted to watch more than plain old mine.

She wore out that chemistry set. I had to buy refills of litmus papers, glass slides, and filter funnels. She stopped using it only after a seven-year-old neighbor boy broke in while we were at the grocery store and dumped all the chemicals into
one aluminum bowl to see what would happen. Nothing did, really, and the only damage was to the concrete floor (a permanent blue stain) and to Ellie: the magic of the set from her father was gone. She didn’t play with it again.

Once, though, before that happened, when she was in fifth grade, I couldn’t find her for bed. I thought the shed would be too cold for her to be in that night, but there she was, head down on the chemistry table. She’d been reading
Little
Women
(her first time) and she’d fallen asleep, the book splayed open next to her. Quietly, I craned my neck to see what page she was on. Mr. March had just come home from the war, surprising everyone. Amy had cried all over his shoes, Beth had walked, and Mr. Brooks had accidentally kissed Meg. It was the perfect place, the happiest part of the book. I wanted to take it from her, so she wouldn’t keep reading. So that would never change.

I was still so
angry
. I didn’t want Paul—he’d broken my heart when he left, and I’d spent all the time I wanted to spend crying over him. But Ellie was stuck with him, and because of her, I was stuck with him, too. For the rest of my life, I’d have to include him in graduation photos, and his name would be on her wedding announcement, and I’d always have to remember the day he told me he’d met someone else.

I didn’t want her to be reading
Little Women
, pining over Mr. March.

I didn’t want her playing with the chemistry set, longing to test Paul’s blood.

But the next time he showed up to take her to ice cream (an hour—an
hour
with his daughter!), I made him smear some blood on a slide for her and I didn’t offer to open his vein for him.

And when she finished
Little Women
, she—like I had—reopened it and started it all over again. “Won’t you be sad about Beth a second time, chipmunk?” I asked.

She flipped another page, barely looking up at me. “It’s worth it.”

Pain was worth it. My heart hurt as I looked at her—her ears shaped like his, her mouth a copy of mine—a perfect mix of her father and myself.

Ellie was right. As usual. It was, and is, completely worth it.

N
ora forgot the word “red.”

She was in the food market, the expensive one on the corner, the one they never went to unless they wanted just one item: when they needed an egg for pancakes or one box of birthday candles. She was alone when she forgot the word, when she realized she didn’t have it ready.

Nora had known she would drop words—they’d said she would. She’d lost only a couple so far, though, and they’d come back quickly: “cellophane,” “winterized.” Words that didn’t matter much, words anyone could have lost. She was expecting to lose more of them, but she hadn’t known she’d be able to feel the hole they left when they went.

“I need a . . . pepper,” she said again to the young stock clerk who asked her what she was looking for.

He looked confused. She was standing in front of the peppers. Thoughtfully, he pointed them out, as if she had just overlooked them.

But Nora was missing nothing but the word for the color she wanted.

She remembered all the other colors. She knew she didn’t want a yellow pepper: they were too sweet. She didn’t want a green one: too bland.

She wanted to touch the pepper in front of her, the one that was the color she was missing. She could taste the color, slightly bitter and a bit tangy. A short word. Or maybe a long one?

She knew the other words—the words that lived around it. “Vermillion,” “cerise,” “scarlet,” “ruby,” “cardinal,” “carmine,” “maroon.”
Beach glass didn’t often come in that particular color. The piece she had in her pocket today was pale gold when she held it up to the light. Pretty, but the wrong word. She could feel her brain tugging, shaking itself out upside down, like a purse that held the very last dime. Her brain knew the word was there, but how did you find the missing word when you didn’t even know what it started with?

Nora moved her tongue in her mouth. She couldn’t even remember what the word felt like.

She became more frantic, her pulse pounding in her fingertips, but she didn’t want to worry the nice stock boy, who was watching her carefully, as if he thought she was perhaps crazy enough to steal the vegetable she couldn’t describe. Behind him was a bin full of apples the exact color she’d misplaced. A woman reached forward to take one, her fingernails the color of the lost word.

Nora picked up a pepper and bagged it. She tried sneaking up on the color, putting it in a sentence.
This pepper is . . .
Nothing. She tried again.
I like apples that are . . .

When the checker rang up her purchase, she watched the electronic scanner to see if somehow, by magic, the color would show on the display, but all it said was
GROC.VEG.MISC.

In her car (which was blue, very blue, such a
blue
kind of car, no help at all), Nora held the pepper in her hands. She ran
through the letters, testing all twenty-six of them, but the word wouldn’t come. She wanted to cry and felt tears of anger start. She held her breath for a moment until she pressed the tears back into her chest, and then she took a bite of the pepper, right out of the side, hoping the taste would fill in the terrifying blank.

But nothing came except the vague unease that she wouldn’t have enough pepper for the chicken curry she’d planned and that she hadn’t washed it before biting into it.

Home. She needed to be home. The word would be there for her. Surely it would.

“Early-onset,” Nora whispered, her fingers playing with the end of her key ring, the rabbit’s foot Ellie had given her years before cold and smooth under her fingertips. Most of its fur had rubbed off a long time ago. Nora hated to admit it, but she liked the lucky charm more this way. When she rubbed it, she felt the leather of the dead bunny’s foot. It was strong, a surprisingly tough hide. Something strong that belied the softness of its fur. The rabbit, underneath that pretty pelt, was strong.

Nora, underneath her anger, was strong, too.

She was. She had to be. Fury, rage, hatred—that temperature of emotion had never been anything that had gotten her very far in the past, but now she needed the heat. She had to fight with everything that was in her. She wished for an agonizing moment (that she would never admit to
anyone
) that she had cancer. Cancer was fightable. Valiant. She could kick cancer’s
ass
, and afterward, she’d be labeled a hero.

If she did have this thing—this hell of a disease—she’d end up a wandering idiot. Someone to be pitied. Hidden.

The Internet—the hateful, terrible, awful Internet—had told her that there wasn’t much she could do. Drugs, maybe. A combination of Aricept and Namenda, the same drugs that Dr. Niles had put her on immediately. Then there were experimental trials, lots of them, but she’d have to be willing to accept a possible placebo, and that didn’t sound like a great idea. Anyway,
why should she be in a hurry to take medications that just prolonged . . . what exactly? The agony? The desperation? At what point would she be stripped of nothing but a desperate wish for death? When would she start spending her days wishing for them to end?

Questions, so many questions. What if you wanted to kill yourself and you couldn’t? What if you missed your window of ability? What if you planned to take yourself out with pills or a noose, and on the day you planned it, you forgot to take the steps?

Who would help?

There was only one person who could.

Nora was so upset she almost ran the stoplight at Tiburon and Lyford. She slammed on the brakes. Her purse and the pepper flew off the seat into the footwell.

Then she laughed with sudden unexpected delight.

Red. The light was
red
. It was the happiest word, right up there next to “Ellie” and “sister” and “Tiburon” and “pencil” and “sky.”

Red, red,
red
.

Things could change. They could change quickly. As fast as the storm came, the sun came even more rapidly. You never knew—that’s what she always told her readers in her column. You just never
knew.
Red, red, red-red-red. Her heart sang the word all the way home and her chicken curry came out so well Ellie asked for thirds.

“H
ow long has it been?” It was taking too long. Mariana had made a mistake. She wanted to take it back. She didn’t want to know anymore. Her jaw ached from clenching it for the last . . . “How long?” she asked again.

Nora looked at her phone. “Five minutes.”

Screw facts. “No way. It’s been, like, half an hour.”

“He said he’d be right back. It’ll be okay.” Nora’s voice was calm, soothing.

Mariana twisted her fingers in her lap. There should be
rules
for genetic counselors. They shouldn’t leave patients in their offices alone. Too much time and the brain went crazy.
What if I have it?

At BreathingRoom, her developer, Grant, had thought she shouldn’t find out. He said knowing she might get sick would do nothing but scare her and take her out of the current moment. Grant was good at his job—not only was he in charge of making sure the app was up and running, but he believed in it. He
meditated with purpose and ease, and while no one got meditation “right” (it wasn’t a quiz, Mariana said over and over again), if anyone did, it would be Grant. He was openhanded and clear hearted naturally. Mariana sometimes wanted to put him in charge, make
him
be on the recordings, on the podcasts. She took his opinion seriously, and she agreed that knowing her genetic fate didn’t secure any real fate at all.

She knew what Luke would have said if she’d asked him about it.
The more you know, the better.
He was working his way—alphabetically—through a list of the classics he’d never read. She pointed out that she’d never read
Moby Dick
, either, and she was doing just fine. “But what if it held something important, something you missed? Wouldn’t you want to know that? Wouldn’t you want to add that to what you have inside you? The more you know, the better.” He would carefully insert his bookmark—a blow-in subscription card to
Rider Magazine
—and shut the book. He always closed whatever he was reading when he talked to her in order to make her feel important. When she’d told him about Nora’s diagnosis, he’d listened so hard she thought he might be able to read her thoughts. For the first time since the proposal disaster, they’d made love under the skylight. With an almost-full moon overhead, Mariana had cried when she came. Luke had known it wasn’t from the orgasm, and he’d cried, too.

But she hadn’t asked him for his opinion.

The very fact that she hadn’t talked with him about her choice to get tested felt like a betrayal. She loved him—nothing about that had changed. He
should
have been a part of her decision. But when they talked now, there was a space between their words, a space that both of them tried to fill with smiles and touches and small, daily jokes, a space that never quite got closed. Small talk was words thrown into the chasm between them—maybe someday they’d fill it up and be able to walk toward each other again.

The more you know, the better.
That’s what he
would
have said
if he were there in the waiting room with her and Nora, so she said it to herself.
The more you know, the better.

Most important, her sister, Nora, needed to know if Mariana had the PS1 mutation.

Mariana’s stomach knotted, her guts tangled. This was why she didn’t go to doctors. This. A person could find out terrible things from someone who’d paid a lot to get a bunch of letters after his name. That wasn’t the real reason, she knew. She just hated facing the reality of doctors. They told you to eat right, to look to the future, to watch your cholesterol. Before Luke, she’d barely managed to remember to pay her electricity bill. She’d never had time to be too thoughtful about her triglycerides. Shit. Even if she
did
have EOAD, if she stepped in front of a Muni bus by accident,
that’s
how she would die, not from the complications of Alzheimer’s.

From the comfortable seat next to her (perhaps the designers had confused comfort with comforting), Nora said in that same soothing voice, “You don’t have it. You can’t have it. Besides,
if
you had it, you’d be showing signs. You’re not showing signs.” It had been Nora’s catchphrase for weeks.
You’d be showing signs.

How did she
know
Mariana would be showing anything at all, though? They were different in so many ways. They were fraternal, not identical. Mariana had freckles on her forearms, while Nora didn’t have a single one. Mariana was half an inch taller. They hadn’t walked at the same time—their mother had told them Nora had lagged by two months, something Nora had always seemed a little ashamed of.
They’d gotten their periods three months apart, with Nora in the lead that time. Sure, they’d been knitted together in the same womb at the same time. That just made them very close next-door neighbors. That was all.

Now, though, Mariana noticed their legs were jiggling in exactly the same way—silently jouncing up and down as if they were both trying to entertain invisible fractious babies.

“We’re just getting the facts, that’s all,” said Nora. If she’d
had a baby on her knee, it would have flipped into the air with the bounce she gave the last word. “It’ll be negative. You don’t have it.”

“For fuck’s sake,” Mariana said. Then she caught herself. This was such a bad idea. Mariana had been so firmly against doing this that she hadn’t thought about what might happen next—what if she had the gene mutation? How was she supposed to react to the news? Would she scream? It didn’t seem appropriate, given that Nora was already dealing with it. And what if she didn’t have it? Should she celebrate? Again, that seemed wrong under the circumstances.

Mariana’s teeth ground together, and her left foot began to jiggle harder. Under the smooth orange carpet, she could feel a floorboard thump in answer. It was reassuring, feeling the bones of the old building. “You know,” she said, “they shouldn’t have fake plants.”

“What?”

She pointed at the fern behind the doctor’s desk. “Plastic. I don’t think it’s a good idea.”

Nora’s eyebrows flew so high they almost ducked under her hairline, and Mariana knew she’d succeeded. For half a second, she’d distracted her sister.

“You’re absolutely right.”

Mariana nodded. “I knew you’d think so.”

“This is a
doctor’s
office.”

“I know.”

“They take care of their patients, and part of that care is making us feel as if they’ll do a good job of it. What does it
mean
that they can’t trust themselves to have real plants?” Nora stood, shrugging her bag onto her shoulder. “Let’s go.”

“What?” It was supposed to be a distraction, not an out, though she wouldn’t look a gift horse in its genetic markers.

“Let’s
go
. We’ll find another doctor.”

“Are you sure? With all the tests they’ve run already?”

A sheen of tears brightened Nora’s eyes, and Mariana’s heart thumped in her chest. Instead of distracting her, she’d upset her. This was so much worse. She was an idiot. She
knew
better. No crying. If her sister cried, it would end her.

“You know what? I think I’m wrong. About the plant.”

Nora’s eyes were still frighteningly glassy. “Don’t patronize me.”

Mariana stood and moved behind the doctor’s desk. “Look. It’s real.”

“It isn’t. I can tell from here. Probably from Target.”

“It’s totally real. It’s in real dirt.”

“What else would they put fake plants in, Cheerios? It’s silk.”

Mariana ripped off a frond, and it came off the base stalk with a viscously wet crack. She held it up triumphantly. “It’s
totally
real.”

The doctor entered, a large white envelope in his hand.

“Oh, shit.” Mariana dropped the leaf. “Sorry.”

Nora started laughing.

Dr. Ghanjit frowned but didn’t say anything as Mariana scurried around the desk and back to her chair. She rubbed her hands discreetly on the sides of her pants, dusting off the dirt. Nora made a noise that was a choked giggle.

“Sorry,” Mariana said again.

The doctor, a man in his midsixties with bright hazel eyes, shrugged. “It happens. We replace that thing every year or two.”

Nora squeaked again and Mariana ignored her as hard as she could. She wouldn’t look at her. If they went into a giggle fit now—no, it would be terrible. No matter what he said, it wouldn’t be the kind of thing they should laugh at.

“Okay, you ready?” he asked, sliding the papers out of the envelope and onto his desk.

Mariana glanced at Nora, but her sister wouldn’t meet her gaze. She’d banished the giggle squeak and her face was straight now, her expression stern. “Yes,” said Nora. “We are.”

“Wait a minute,” said Mariana. She didn’t have the diagnosis yet, didn’t know what he’d say, but she felt all the air leave her lungs, as if she’d fallen from a great height onto her back. She leaned forward and tried to find where she stored that breath—
breathe into your belly
—but she couldn’t find it. Sucking a small sip of air, she said, “Just one second. I’m sorry.” Dizzy. She was dizzy. Fucking hell, was that a symptom?

Nora scooted her chair to the right and hooked a foot around hers. Her right leg tangled with Mariana’s left one. They used to sit like this in school when they could get away with it, stronger against the class that way, winners in their solo three-legged race.

“Look at me,” Nora said.

Her eyes were soft. Had Nora been this terrified when she’d learned her fate? Probably not. She hadn’t known at that point how devastating the diagnosis would be. She’d been alone when she’d heard, and Mariana
hated
that fact. She should have been there.

Nora smiled and jiggled her leg just the tiniest bit.

Mariana smiled back and then turned to face the doctor. “We’re ready.”

“Okay.” He looked down at the paperwork as if he were seeing it for the first time, which Mariana hoped to god he wasn’t. “You’re negative for the PS1 mutation.”