Still Alice (21 page)

“I started getting angry easily and blowing up at the other agents in the office. I’d always been so easygoing and well liked, and suddenly, I was becoming known for my short fuse. I was ruining my reputation. My reputation was everything. My doctor put me on an antidepressant. And when that one didn’t work, he put me on another, and another.”

“For a long time, I just thought I was overtired and multitasking too much,” said Cathy. “I was working part-time as a pharmacist, raising two kids, running the house, running around from one thing to the next like a chicken with my head cut off. I was only forty-six, so it never occurred to me that I might have dementia. Then, one day at work, I couldn’t figure out the names of the drugs, and I didn’t know how to measure out ten milliliters. Right then, I realized I was capable of giving someone the wrong amount of drug or even the wrong drug. Basically, I was capable of accidentally killing someone. So I took off my lab coat, went home early, and never went back. I was devastated. I thought I was going crazy.”

“How about you, Dan? What were the first things you noticed?” asked Mary.

“I used to be really handy around the house. Then, one day, I couldn’t figure out how to fix the things I’d always been able to fix. I always kept my workshop tidy, everything in its place. Now, it’s a total mess. I accused my friends of borrowing my tools and messing up the place and not returning them when I couldn’t find them. But it was always me. I was a firefighter. I started forgetting the names of the guys on the force. I couldn’t finish my own sentences. I forgot how to make a cup of coffee. I’d seen the same things with my mom when I was a teenager. She had early-onset AD, too.”

They shared stories of their earliest symptoms, their struggles to get a correct diagnosis, their strategies for coping and living with dementia. They nodded and laughed and cried over stories of lost keys, lost thoughts, and lost life dreams. Alice felt unedited and truly heard. She felt normal.

“Alice, is your husband still working?” asked Mary.

“Yes. He’s been buried in his research and teaching this semester. He’s been traveling a lot. It’s been hard. But we both have a sabbatical year next year. So I just have to hold on and get to the end of next semester, and we’ll be able to be home together for a whole year.”

“You can make it, you’re almost there,” said Cathy.

Just a few more months.

A
NNA SENT
L
YDIA INTO THE
kitchen to make the white chocolate bread pudding. Noticeably pregnant now and no longer nauseated, Anna seemed to eat constantly, as if on a mission to make up for calories lost during the months of morning sickness.

“I have some news,” said John. “I’ve been offered the position of chairman of the Cancer Biology and Genetics Program at Sloan-Kettering.”

“Where’s that?” asked Anna, through a mouthful of chocolate-covered cranberries.

“New York City.”

No one said a word. Dean Martin belted out “A Marshmallow World” on the stereo.

“Well, you’re not actually entertaining the idea of taking it, are you?” asked Anna.

“I am. I’ve been down there several times this fall, and it’s a perfect position for me.”

“But what about Mom?” asked Anna.

“She’s not working anymore, and she rarely goes to campus at all.”

“But she needs to be here,” said Anna.

“No, she doesn’t. She’ll be with me.”

“Oh, please! I come over at night so you can work late, and I sleep over whenever you’re out of town, and Tom comes when he can on the weekends,” said Anna. “We’re not here all the time, but—”

“That’s right, you’re not here all the time. You don’t see how bad it’s getting. She pretends to know a lot more than she does. You think she’s going to appreciate that we’re in Cambridge a year from now? She doesn’t recognize where she is now when we’re three blocks away. We could very well be in New York City, and I could tell her it’s Harvard Square, and she wouldn’t know the difference.”

“Yes, she would, Dad,” said Tom. “Don’t say that.”

“Well, we wouldn’t move before September. It’s a long ways off.”

“It doesn’t matter when it is, she needs to stay here. She’ll go downhill fast if you move away,” said Anna.

“I agree,” said Tom.

They talked about her as if she weren’t sitting in the wing chair, a few feet away. They talked about her, in front of her, as if she were deaf. They talked about her, in front of her, without including her, as if she had Alzheimer’s disease.

“This position is likely never to open up again in my lifetime, and they want me.”

“I want her to be able to see the twins,” said Anna.

“New York isn’t that far. And there’s no guarantee that you’re all going to stay in Boston.”

“I might be there,” said Lydia.

Lydia stood in the doorway between the living room and kitchen. Alice hadn’t seen her there before she spoke, and her sudden presence in the periphery startled her.

“I applied to NYU, Brandeis, Brown, and Yale. If I get into NYU and you and Mom are in New York, I could live with you and help out. And if you stay here, and I get into Brandeis or Brown, I can be around, too,” said Lydia.

Alice wanted to tell Lydia that those were excellent schools. She wanted to ask her about the programs that most interested her. She wanted to tell her that she was proud of her. But her thoughts from idea to mouth moved too slowly today, as if they had to swim miles through black river sludge before surfacing to be heard, and most of them drowned somewhere along the way.

“That’s great, Lydia,” said Tom.

“So that’s it. You’re just going to continue about your life as if Mom doesn’t have Alzheimer’s, and we don’t have anything to say about it?” asked Anna.

“I’m making plenty of sacrifices,” said John.

He’d always loved her, but she’d made it easy for him. She’d been looking at their time left together as precious time. She didn’t know how much longer she could hang on to herself, but she’d convinced herself that she could make it through their sabbatical year. One last sabbatical year together. She wouldn’t trade that in for anything.

Apparently, he would. How could he? The question raged through the black river sludge in her head unanswered. How could he? The answer it found kicked her behind the eyes and choked her heart. One of them was going to have to sacrifice everything.

Alice, answer the following questions:

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?

December

Harvard Square

Harvard

April

Three

M
om, wake up. How long has she been asleep?”

“About eighteen hours now.”

“Has she done this before?”

“A couple of times.”

“Dad, I’m worried. What if she took too many of her pills yesterday?”

“No, I checked her bottles and dispenser.”

Alice could hear them talking, and she could understand what they were saying, but she was only mildly interested. It was like eavesdropping on a conversation between strangers about a woman she didn’t know. She had no desire to wake up. She had no awareness that she was asleep.

“Ali? Can you hear me?”

“Mom, it’s me, Lydia, can you wake up?”

The woman named Lydia talked about wanting to call a doctor. The man named Dad talked about letting the woman named Ali sleep some more. They talked about ordering Mexican and eating dinner at home. Maybe the smell of food in the house would wake up the woman named Ali. Then, the voices ceased. Everything was dark and quiet again.

S
HE WALKED DOWN A SANDY
path that led into dense woods. She ascended via a series of switchbacks out of the woods and onto a steep, exposed cliff. She walked to the edge and looked out. The ocean below her was frozen solid, its shore buried in high drifts of snow. The panorama before her appeared lifeless, colorless, impossibly still, and silent. She yelled for John, but her voice carried no sound. She turned to go back, but the path and the forest were gone. She looked down at her pale, bony ankles and bare feet. With no other choice, she readied to step off the cliff.

S
HE SAT ON A BEACH
chair and buried and unburied her feet in the warm, fine sand. She watched Christina, her best friend from kindergarten and still only five years old, flying a butterfly kite. The pink and yellow daisies on Christina’s bathing suit, the blue and purple wings of the butterfly kite, the blues in the sky, the yellow sun, the red polish on her own toenails, indeed every color before her was more brilliant and striking than anything she’d ever seen. As she watched Chris
tina, she was overwhelmed with joy and love, not so much for her childhood friend but for the bold and breathtaking colors of her bathing suit and kite.

Her sister, Anne, and Lydia, both about sixteen years old, lay next to each other on red, white, and blue striped beach towels. Their shiny, caramel bodies in matching bubble gum pink bikinis glistened in the sun. They, too, were glossy, cartoon-colored, and mesmerizing.

“Ready?” asked John.

“I’m a little scared.”

“It’s now or never.”

She stood, and he strapped her torso into a harness attached to a tangerine orange parasail. He clicked and adjusted buckles until she felt snug and secure. He held on to her shoulders, pushing against the strong, invisible force willing her upward.

“Ready?” asked John.

“Yes.”

He let go of her, and she soared with exhilarating speed into the palette of the sky. The winds she traveled on were dazzling swirls of robin’s egg blue, periwinkle, lavender, and fuchsia. The ocean below was a rolling kaleidoscope of turquoise, aquamarine, and violet.

Christina’s butterfly kite won its freedom and fluttered nearby. It was the most exquisite thing Alice had ever seen, and she wanted it more than anything she’d ever desired. She reached out to grab its string, but a sudden, strong shift in air current spun her around. She looked back, but it was obscured by the glowing sunset orange of her parasail. For the first time, she realized that she couldn’t steer. She looked down at the earth, at the vibrant dots that were her family.
She wondered if the beautiful and spirited winds would ever bring her back to them.

L
YDIA LAY CURLED ON HER
side on top of the covers of Alice’s bed. The shades were drawn, the room filled with soft, subdued daylight.

“Am I dreaming?” asked Alice.

“No, you’re awake.”

“How long have I been asleep?”

“A couple of days now.”

“Oh no, I’m sorry.”

“It’s okay, Mom. It’s good to hear your voice. Do you think you took too many pills?”

“I don’t remember. I could’ve. I didn’t mean to.”

“I’m worried about you.”

Alice looked at Lydia in pieces, close-up snapshots of her features. She recognized each one like people recognized the house they grew up in, a parent’s voice, the creases of their own hands, instinctively, without effort or conscious consideration. But strangely, she had a hard time identifying Lydia as a whole.

“You’re so beautiful,” said Alice. “I’m so afraid of looking at you and not knowing who you are.”

“I think that even if you don’t know who I am someday, you’ll still know that I love you.”

“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”

“Then, I’ll tell you that I do, and you’ll believe me.”

Alice liked that.
But will I always love her? Does my love for her reside in my head or my heart?
The scientist in her believed
that emotion resulted from complex limbic brain circuitry, circuitry that was for her, at this very moment, trapped in the trenches of a battle in which there would be no survivors. The mother in her believed that the love she had for her daughter was safe from the mayhem in her mind, because it lived in her heart.

“How are you, Mom?”

“Not so good. This semester was hard, without my work, without Harvard, and this disease progressing, and your dad hardly ever home. It’s been almost too hard.”

“I’m so sorry. I wish I could be here more. Next fall, I’ll be closer. I thought about moving back now, but I just got cast in this great play. It’s a small part, but—”

“It’s okay. I wish I could see you more, too, but I’d never let you stop living your life for me.”

She thought about John.

“Your dad wants to move to New York. He got an offer at Sloan-Kettering.”

“I know. I was there.”

“I don’t want to go.”

“I couldn’t imagine that you did.”

“I can’t leave here. The twins will be here in April.”

“I can’t wait to see those babies.”

“Me, too.”

Alice imagined holding them in her arms, their warm bodies, their tiny, curled fingers and chunky, unused feet, their puffy, round eyes. She wondered if they’d look like her or John. And the smell. She couldn’t wait to smell her delicious grandchildren.

Most grandparents delighted in imagining their grandchildren’s lives, the promise of attending recitals and birthday
parties, graduations and weddings. She knew she wouldn’t be here for recitals and birthday parties, graduations and weddings. But she would be here to hold them and smell them, and she’d be damned if she’d be sitting alone somewhere in New York instead.

“How’s Malcolm?”

“Good. We just did the Memory Walk together in L.A.”

“What’s he like?”

Lydia’s smile jumped ahead of her answer.

“He’s very tall, outdoorsy, a little shy.”

“What’s he like with you?”

“He’s very sweet. He loves how smart I am, he’s so proud of my acting, he brags about me a lot, it’s almost embarrassing. You’d like him.”

“What are you like with him?”

Lydia considered this for several moments, as if she hadn’t before.

“Myself.”

“Good.”

Alice smiled and squeezed Lydia’s hand. She thought to ask Lydia what that meant to her, to describe herself, to remind her, but the thought evaporated too quickly to speak it.

“What were we just talking about?” asked Alice.

“Malcolm, Memory Walk? New York?” asked Lydia, offering prompts.

“I go for walks around here, and I feel safe. Even if I get a little turned around, I eventually see something that looks familiar, and enough people in the stores know me and point me in the right direction. The girl at Jerri’s is always keeping track of my wallet and keys.

“And I have my support group friends here. I need them.
I couldn’t learn New York now. I’d lose what little independence I still have. A new job. Your dad would be working all the time. I’d lose him, too.”

“Mom, you need to tell all this to Dad.”

She was right. But it was so much easier telling her.

“Lydia, I’m so proud of you.”

“Thanks.”

“In case I forget, know that I love you.”

“I love you, too, Mom.”

“I
DON’T WANT TO MOVE
to New York,” said Alice.

“It’s a long ways off, we don’t have to make a decision on it now,” said John.

“I
want
to make a decision on it now. I’m deciding now. I want to be clear about this while I still can be. I don’t want to move to New York.”

“What if Lydia’s there?”

“What if she’s not? You should’ve discussed this with me privately, before announcing it to the kids.”

“I did.”

“No, you didn’t.”

“Yes, I did, many times.”

“Oh, so I don’t remember? That’s convenient.”

She breathed, in through her nose, out through her mouth, allowing a calm moment to pull herself out of the elementary school argument they were spiraling into.

“John, I knew you were meeting with people at Sloan-Kettering, but I never understood that they were wooing you for a position for this upcoming year. I would’ve spoken up if I’d known this.”

“I told you why I was going there.”

“Fine. Would they be willing to let you take your sabbatical year and start a year from September?”

“No, they need someone now. It was difficult as it was negotiating them out that far, but I need the time to finish up some things in the lab here.”

“Couldn’t they hire someone temporary, you could take your sabbatical year with me, and then you could start?”

“No.”

“Did you even ask?”

“Look, the field’s so competitive right now, and everything’s moving so rapidly. We’re on the edge of some huge finds. I mean, we’re knocking on the door to a cure for cancer. The drug companies are interested. And with all the classes and administrative crap at Harvard, it’s just slowing me down. If I don’t take this, I could ruin my one shot at discovering something that truly matters.”

“This isn’t your one shot. You’re brilliant, and you don’t have Alzheimer’s. You’re going to have plenty of shots.”

He looked at her and said nothing.

“This next year is
my
one shot, John, not yours. This next year is my last chance at living my life and knowing what it means to me. I don’t think I have much more time of really being me, and I want to spend that time with you, and I can’t believe you don’t want to spend it together.”

“I do. We would be.”

“That’s bullshit, and you know it. Our life is here. Tom and Anna and the babies, Mary, Cathy, and Dan, and maybe Lydia. If you take this, you’ll be working all the time, you know you will, and I’d be there all alone. This decision has nothing to do with wanting to be with me, and it takes everything I have left away. I’m not going.”

“I won’t be working all the time, I promise. And what if Lydia’s living in New York? What if you get to stay with Anna and Charlie one week a month? There are ways we can work this out so you’re not alone.”

“What if Lydia’s not in New York? What if she’s at Brandeis?”

“That’s why I think we should wait, make the decision later, when we have more information.”

“I want you to take the sabbatical year.”

“Alice, the choice for me isn’t ‘take the position at Sloan’ or ‘take a sabbatical year.’ It’s ‘take the position at Sloan’ or ‘continue here at Harvard.’ I just can’t take the next year off.”

He became blurry as her body trembled and her eyes burned with furious tears.

“I can’t do this anymore! Please! I can’t keep holding on without you! You can take the year off. If you wanted to, you could. I need you to.”

“What if I turn this down, and I take the next year off, and you don’t even know who I am?”

“What if I do, but after next year, I don’t? How can you even consider spending the time we have left squirreled away in your fucking lab? I would never do this to you.”

“I’d never ask you to.”

“You wouldn’t have to.”

“I don’t think I can do it, Alice. I’m sorry, I just don’t think I can take being home for a whole year, just sitting and watching what this disease is stealing from you. I can’t take watching you not knowing how to get dressed and not knowing how to work the television. If I’m in lab, I don’t have to watch you sticking Post-it notes on all the cabinets and doors. I can’t just stay home and watch you get worse. It kills me.”

“No, John, it’s killing
me,
not you. I’m getting worse,
whether you’re home looking at me or hiding in your lab. You’re losing me. I’m losing me. But if you don’t take next year off with me, well, then, we lost you first. I have Alzheimer’s. What’s your fucking excuse?”

S
HE PULLED OUT CANS AND
boxes and bottles, glasses and dishes and bowls, pots and pans. She stacked everything on the kitchen table, and when she ran out of room there, she used the floor.

She took each coat out of the hall closet, unzipped and inverted all the pockets. She found money, ticket stubs, tissues, and nothing. After each strip search, she discarded the innocent coat to the floor.

She flipped the cushions off the couches and armchairs. She emptied her desk drawer and file cabinet. She dumped the contents of her book bag, her laptop bag, and her baby blue bag. She sifted through the piles, touching each object with her fingers to register its name in her head. Nothing.

Her search didn’t require her to remember where she’d already looked. The heaps of unearthed stuff evidenced her previous excavation sites. From the looks of things, she’d covered the entire first floor. She was sweating, manic. She wasn’t giving up. She raced upstairs.

She ransacked the laundry basket, the bedside tables, the dresser drawers, the bedroom closets, her jewelry box, the linen closet, the medicine cabinet.
The downstairs bathroom.
She ran back down the stairs, sweating, manic.