“Are you kidding me? I tell you I’m dying, and you need your beauty sleep?” The word “dying,” the one she thought would stop her heart the very second she said it out loud to her daughter, came easily. Gleefully. “Dying,” she said again.
“We can talk tomorrow.”
“You have school tomorrow.”
“That reminds me, I have a test in physics.” Ellie’s nose went higher, something she always did when she refused to listen.
Nora wanted to threaten her with something, anything. Turn out your light. It’s after midnight. No studying. You blew it, going out with that boy instead of coming home. You should have been home talking to me. You’re grounded for the rest of your life. No, for the rest of my life.
But there was nothing she could say. It was selfish, and truly, if she could have spared her daughter ever knowing, she would have. She’d fantasized about suicide, leaving Ellie behind without a conversation, a note on the counter the only clue. I love you. I’m sorry. Then she would die (pills? gun? where? how? what was the kindest, easiest method?) without ever having to talk to her daughter about it.
Nothing was right, nothing at all. The anger left her in a rush, leaving a burned-out husk seated on the couch she’d picked out by herself after Paul left. “Okay, sugar. Good night.”
Okay, sugar. Good night. How many nights had she said that? She could get out a calendar and add up the numbers, get an approximation of the total amount. What Nora couldn’t do was estimate the number of times she had left to say it to her daughter. After she was gone, who would wish her girl sweet dreams? Because Paul—it could never be Paul. Even if Paul wanted to take care of his daughter, he’d fail. The one summer Ellie had gone to stay with them—once—Ellie had been back inside a week. Paul had left her at home, twice, while the rest of the family went to dinner and a movie. He’d blamed his wife, that she felt threatened by Ellie. But Nora knew—and Paul knew—it was him. He’d never asked his daughter back, just saw her when he came through town on business, never more than an hour at a time. When he’d left his first family, he’d left them for good. Paul couldn’t have Ellie. He wouldn’t want her, and that was utterly heartbreaking in and of itself. It would have to be Mariana. Nora’s brain stalled, caught in the pain, still watching her daughter standing—seemingly stuck—halfway up, halfway down the stairs.
Wouldn’t it have to be Mariana?
Ellie didn’t look at Nora. Her chin just went higher in the air. “What is it, the thing you have?”
If Nora told her, Ellie would google it in her room. She would learn that EOAD ended badly. Worse than that, she’d learn that she herself had a fifty percent chance of having it. Nora couldn’t say the words, not with her daughter halfway up the steps.
But she couldn’t not answer. That would be the cruelest thing of all.
So she said it. “It’s called early-onset Alzheimer’s.”
Ellie gave a terse nod and then continued up the stairs, her spine ramrod straight.
Her strength was what terrified Nora the most.
She drank the glass of wine she hadn’t let herself have while she’d been waiting for Ellie to get home from god knew where. She sipped it slowly, the unshed tears a solid mass of pain behind her eyes.
A careful, deliberate fifteen minutes later, she went upstairs. She knocked on Ellie’s door once, gently, before opening it.
The light was off in her daughter’s room, a faint white glow coming from where the covers were bunched around Ellie’s face.
Ellie dropped the phone, and then Nora could see nothing but her daughter’s huge green eyes, as gorgeous as they’d been the day they’d handed her baby to her in the hospital.
“Mama,” she whispered.
Nora pulled back the covers and slid in. Then she held her baby as the storm passed overhead.
Chapter Twenty-three
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.
Chapter Twenty-four
Nora 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.
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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.
Chapter Twenty-five
“How 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.
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