Still Alice
Page 22
“Where else would I be?”
“New York.”
“I’m not going to be in New York.”
They sat next to each other on a couch folding baby clothes, separating the pinks from the blues. The television flashed images at them without the volume.
“It’s just, if I accept at Brandeis, and you and Dad move to New York, then I’ll feel like I’m in the wrong place, like I made the wrong decision.”
Alice stopped folding and looked at the woman. She was young, skinny, pretty. She was also tired and conflicted.
“How old are you?” asked Alice.
“Twenty-four.”
“Twenty-four. I loved being twenty-four. You have your whole life in front of you. Anything’s possible. Are you married?”
The pretty, conflicted woman stopped folding and faced Alice squarely. She locked in on Alice’s eyes. The pretty, conflicted woman had searching, honest, peanut butter brown eyes.
“No, I’m not married.”
“Kids?”
“No.”
“Then, you should do exactly what you want.”
“But what if Dad decides to take the job in New York?”
“You can’t make this kind of decision based on what other people might or might not do. This is your decision, your education. You’re a grown woman, you don’t have to do what your father wants. Make it based on what’s right for your life.”
“Okay, I will. Thank you.”
The pretty woman with the lovely peanut butter eyes let out an amused laugh and a sigh and resumed folding.
“We’ve come a long way, Mom.”
Alice didn’t understand what she meant. “You know,” she said, “you remind me of my students. I used to be a student adviser. I was pretty good at it.”
“Yes, you were. You still are.”
“What’s the name of the school you want to go to?”
“Brandeis.”
“Where’s that?”
“In Waltham, only a few minutes from here.”
“And what are you going to study?”
“Acting.”
“That’s wonderful. Will you act in plays?”
“I will.”
“Shakespeare?”
“Yes.”
“I love Shakespeare, especially the tragedies.”
“Me, too.”
The pretty woman moved over and hugged Alice. She smelled fresh and clean, like soap. Her hug penetrated Alice much like her peanut butter eyes had. Alice felt happy and close to her.
“Mom, please don’t move to New York.”
“New York? Don’t be silly. I live here. Why would I move to New York?”
“I DON’T KNOW HOW YOU do this,” said the actress. “I was up with her most of the night, and I feel delirious. I made her scrambled eggs, toast, and tea at three a.m.”
“I was up then. If we could get you to lactate, then you could help me feed one of these guys,” said the mother of the babies.
The mother was sitting on the couch next to the actress, breast-feeding the baby in blue. Alice held the baby in pink. John walked in, showered and dressed, holding a coffee mug in one hand and a newspaper in the other. The women were wearing pajamas.
“Lyd, thanks for getting up last night. I really needed the sleep,” said John.
“Dad, how on earth do you think you can go to New York and do this without our help?” asked the mother.
“I’m going to hire a home health aide. I’m looking to find someone starting now actually.”
“I don’t want strangers taking care of her. They’re not going to hug her and love her like we do,” said the actress.
“And a stranger isn’t going to know her history and memories like we do. We can sometimes fill in her holes and read her body language, and that’s because we know her,” said the mother.
“I’m not saying that we won’t still take care of her, I’m just being realistic and practical. We don’t have to shoulder this entirely ourselves. You’ll be going back to work in a couple of months and coming home every night to two babies you haven’t seen all day.
“And you’re starting school. You keep talking about how intense the program is. Tom’s in surgery as we speak. You’re all about to be busier than you’ve ever been, and your mother would be the last person to want you to compromise the quality of your own lives for her. She’d never want to be a burden to you.”
“She’s not a burden, she’s our mother,” said the mother.
They were talking too quickly and using too many pronouns. And the baby in pink had begun to fuss and cry, distracting her. Alice couldn’t figure out what or who they were talking about. But she could tell by their facial expressions and tones that it was a serious argument. And the women in pajamas were on the same side.
“Maybe it makes more sense for me to take a longer maternity leave. I’m feeling a little rushed, and Charlie’s okay with me taking more time, and it makes sense for being around for Mom.”
“Dad, this is our last chance to spend time with her. You can’t go to New York, you can’t take that away.”
“Look, if you’d accepted at NYU instead of Brandeis, you could’ve spent all the time you wanted with her. You made your choice, I’m making mine.”
“Why doesn’t Mom get a say in this choice?” asked the mother.
“She doesn’t want to live in New York,” said the actress.
“You don’t know what she wants,” said John.
“She’s said she doesn’t want to. Go ahead and ask her. Just because she has Alzheimer’s doesn’t mean she doesn’t know what she does and doesn’t want. At three in the morning, she wanted scrambled eggs and toast, and she didn’t want cereal or bacon. And she definitely didn’t want to go back to bed. You’re choosing to dismiss what she wants because she has Alzheimer’s,” said the actress.
Oh, they’re talking about me.
“I’m not dismissing what she wants. I’m doing the best I can to do what’s right for both of us. If she got everything she unilaterally wanted, we wouldn’t even be having this conversation.”
“What the hell does that mean?” asked the mother.
“Nothing.”
“It’s like you don’t get that she’s not gone yet, like you think her time left isn’t meaningful anymore. You’re acting like a selfish child,” said the mother.
The mother was crying now, but she seemed angry. She looked and sounded like Alice’s sister, Anne. But she couldn’t be Anne. That was impossible. Anne didn’t have any children.
“How do you know she thinks this is meaningful? Look, it’s not just me. The old her, before this, she wouldn’t want me to give this up. She didn’t want to be here like this,” said John.
“What does that mean?” asked the crying woman who looked and sounded like Anne.
“Nothing. Look, I understand and appreciate everything you’re saying. But I’m trying to make a decision that’s rational and not emotional.”
“Why? What’s wrong with being emotional about this? Why is that a negative thing? Why isn’t the emotional decision the right decision?” asked the woman who wasn’t crying.
“I haven’t come to a final decision yet, and the two of you aren’t going to bully me into one. You don’t know everything.”
“So tell us, Dad, tell us what we don’t know,” said the crying woman, her voice shaking and threatening.
The threat silenced him for a moment.
“I don’t have time for this now, I have a meeting.”
He got up and abandoned the argument, leaving the women and babies alone. He slammed the front door as he left the house, startling the baby in blue, which had just fallen asleep in the mother’s arms. It wailed. As if it were contagious, the other woman began crying, too. Maybe she just felt left out. Now, everyone was crying—the pink baby, the blue baby, the mother, and the woman next to the mother. Everyone except Alice. She wasn’t sad or angry or defeated or scared. She was hungry.
 
; “What are we having for dinner?”
MAY 2005
They reached the counter after waiting a long time in a long line.
“All right, Alice, what do you want?” asked John.
“I’ll have whatever you’re having.”
“I’m getting vanilla.”
“That’s fine, I’ll have that.”
“You don’t want vanilla, you want something chocolate.”
“Okay then, I’ll have something chocolate.”
It seemed simple and unproblematic enough to her, but he became visibly stressed by the exchange.
“I’ll have a vanilla in a cone, and she’ll have a chocolate fudge brownie in a cone, both large.”
Away from the stores and crowded lines of people, they sat on a graffiti-covered bench on the edge of a river and ate their ice creams. Several geese nibbled in the grass just a few feet away. The geese kept their heads down, consumed in the business of nibbling, completely unbothered by Alice and John’s presence. Alice giggled, wondering if the geese thought the same thing about them.
“Alice, do you know what month it is?”
It had rained earlier, but the sky was clear now, and the heat from the sun and the dry bench warmed her bones. It felt so good to be warm. Many of the pink and white blossoms from the crab apple tree next to them were scattered across the ground like party confetti.
“It’s spring.”
“What month of spring?”
Alice licked her something chocolate ice cream and carefully considered his question. She couldn’t remember the last time she’d looked at a calendar. It had been a long time it seemed since she needed to be at a certain place at a certain time. Or if she did need to be somewhere on a certain day at a certain time, John knew about it for her and made sure she got there when she was supposed to. She didn’t use an appointment machine, and she no longer wore a wrist clock.
Well, let’s see. The months of the year.
“I don’t know, what is it?”
“May.”
“Oh.”
“Do you know when Anna’s birthday is?”
“Is it in May?”
“No.”
“Well, I think Anne’s birthday is in the spring.”
“No, not Anne, Anna.”
A yellow truck groaned loudly over the bridge near them and startled Alice. One of the geese spread its wings and honked at the truck, defending them. Alice wondered whether it was brave or a hothead, looking for a fight. She giggled, thinking about the feisty goose.
She licked her something chocolate ice cream and studied the architecture of the red-brick building across the river. It had many windows and a clock with old-fashioned numbers on a gold dome on its top. It looked important and familiar.
“What’s that building over there?” asked Alice.
“That’s the business school. It’s part of Harvard.”
“Oh. Did I teach in that building?”
“No, you taught in a different building on this side of the river.”
“Oh.”
“Alice, where’s your office?”
“My office? It’s at Harvard.”
“Yes, but where at Harvard?”
“In a building on this side of the river.”
“Which building?”
“It’s in a hall, I think. You know, I don’t go there anymore.”
“I know.”
“Then it really doesn’t matter where it is, right? Why don’t we focus on the things that really matter?”
“I’m trying.”
He held her hand. His was warmer than hers. Her hand felt so good in his hand. Two of the geese waddled into the calm water. There were no people swimming in the river. It was probably too cold for people.
“Alice, do you still want to be here?”
His eyebrows bent into a serious shape, and the creases next to his eyes deepened. This question was important to him. She smiled, pleased with herself for finally having a confident answer for him.
“Yes. I like sitting here with you. And I’m not done yet.”
She held up her something chocolate ice cream to show him. It had started to melt and drip down the sides of the cone onto her hand.
“Why, do we need to leave now?” she asked.
“No. Take your time.”
JUNE 2005
Alice sat at her computer waiting for the screen to come to life. Cathy had just called, checking in, concerned. She said that Alice hadn’t returned her emails in a while, that she hadn’t been to the dementia chat room in weeks, and that she’d missed support group again yesterday. It wasn’t until Cathy talked about support group that Alice knew who the concerned Cathy on the phone was. Cathy said that two new people had joined their support group, and that it had been recommended to them by people who’d attended the Dementia Care Conference and had heard Alice’s speech. Alice told her that was wonderful news. She apologized to Cathy for worrying her and told her to let everyone know that she was okay.
But to tell the truth, she was very far from okay. She could still read and comprehend small amounts of text, but the computer keyboard had become an undecipherable jumble of letters. In truth, she’d lost the ability to compose words out of the alphabet letters on the keys. Her ability to use language, that thing that most separates humans from animals, was leaving her, and she was feeling less and less human as it departed. She’d said a tearful good-bye to okay some time ago.
She clicked on her mailbox. Seventy-three new emails. Overwhelmed and powerless to respond, she closed out of her email application without opening anything. She stared at the screen she’d spent much of her professional life in front of. Three folders sat on the desktop arranged in a vertical row: “Hard Drive,” “Alice,” “Butterfly.” She clicked on the “Alice” folder.
Inside were more folders with different titles: “Abstracts,” “Administrative,” “Classes,” “Conferences,” “Figures,” “Grant Proposals,” “Home,” “John,” “Kids,” “Lunch Seminars,” “Molecules to Mind,” “Papers,” “Presentations,” “Students.” Her entire life organized into neat little icons. She couldn’t bear to look inside, afraid she wouldn’t remember or understand her entire life. She clicked on “Butterfly” instead.
Dear Alice,
You wrote this letter to yourself when you were of sound mind. If you are reading this, and you are unable to answer one or more of the following questions, then you are no longer of sound mind:
1. What month is it?
2. Where do you live?
3. Where is your office?
4. When is Anna’s birthday?
5. How many children do you have?
You have Alzheimer’s disease. You have lost too much of yourself, too much of what you love, and you are not living the life you want to live. There is no good outcome to this disease, but you have chosen an outcome that is the most dignified, fair, and respectful to you and your family. You can no longer trust your own judgment, but you can trust mine, your former self, you before Alzheimer’s took too much of you away.
You lived an extraordinary and worthwhile life. You and your husband, John, have three healthy and amazing children, who are all loved and doing well in the world, and you had a remarkable career at Harvard filled with challenge, creativity, passion, and accomplishment.
This last part of your life, the part with Alzheimer’s, and this end that you’ve carefully chosen, is tragic, but you did not live a tragic life. I love you, and I’m proud of you, of how you’ve lived and all that you’ve done while you could.
Now, go to your bedroom. Go to the black table next to the bed, the one with the blue lamp on it. Open the drawer to that table. In the back of the drawer is a bottle of pills. The bottle has a white label on it that says FOR ALICE in black letters. There are a lot of pills in that bottle. Swallow all of them with a big glass of water. Make sure you swallow all of them. Then, get in the bed and go to sleep.
Go now, before you forget. And do not te
ll anyone what you’re doing. Please trust me.
Love,
Alice Howland
She read it again. She didn’t remember writing it. She didn’t know the answers to any of the questions but the one asking the number of children she had. But then, she probably knew that because she’d provided the answer in the letter. She couldn’t be sure of their names. Anna and Charlie, maybe. She couldn’t remember the other one.
She read it again, more slowly this time, if that was even possible. Reading on a computer screen was difficult, more difficult than reading on paper, where she could use a pen and highlighter. And paper she could take with her to her bedroom and read it there. She wanted to print it out but couldn’t figure out how to make that happen. She wished her former self, she before Alzheimer’s took too much of her away, had known to include instructions for printing it out.
She read it again. It was fascinating and surreal, like reading a diary that had been hers when she was a teenager, secret and heartfelt words written by a girl she only vaguely remembered. She wished she’d written more. Her words made her feel sad and proud, powerful and relieved. She took a deep breath, exhaled, and went upstairs.
She got to the top of the stairs and forgot what she had gone up there to do. It carried a sense of importance and urgency, but nothing else. She went back downstairs and looked for evidence of where she’d just been. She found the computer on with a letter to her displayed on the screen. She read it and went back upstairs.
She opened the drawer in a table next to the bed. She pulled out packets of tissues, pens, a stack of sticky paper, a bottle of lotion, a couple of cough candies, dental floss, and some coins. She spread everything out on the bed and touched each item, one at a time. Tissues, pen, pen, pen, sticky paper, coins, candy, candy, floss, lotion.
“Alice?”
“What?”
She spun around. John stood in the doorway.
“What are you doing up here?” he asked.
She looked at the items on the bed.
“Looking for something.”
“I have to run back to the office to pick up a paper I forgot. I’m going to drive, so I’ll only be gone for a few minutes.”