Still Alice (9 page)

3:00, Genetic counselor appointment (John has info)

8:00, Take your evening medications

Stephanie was sitting behind her desk when they came in, but this time, she didn’t smile.

“Before we talk about your results, is there anything you’d like to review about any of the information we went over last time?” she asked.

“No,” said Alice.

“Do you still want the results?”

“Yes.”

“I’m sorry to tell you, Alice, you’re positive for the PS1 mutation.”

Well, there it was, absolute proof, served straight up, no sugar, no salt, no chaser. And it burned all the way down. She could go on a cocktail of estrogen replacement, Xanax, and Prozac and spend the next six months sleeping twelve hours a day at Canyon Ranch, and it wouldn’t change a thing. She had Alzheimer’s disease. She wanted to look at John, but she couldn’t will herself to turn her head.

“As we talked about, this mutation is autosomal dominant; it’s associated with certain development of Alzheimer’s, so this result fits with the diagnosis you’ve already received.”

“What’s the lab’s false positive rate? What’s the name of the lab?” asked John.

“It’s Athena Diagnostics, and they cite a greater than ninety-nine-percent accuracy level of detection for this mutation.”

“John, it’s positive,” said Alice.

She looked at him now. His face, normally angular and determined, appeared slack and unfamiliar to her.

“I’m sorry, I know you were both searching for a way out of this diagnosis.”

“What does this mean for our children?” asked Alice.

“Yes, there’s a lot to think about there. How old are they?”

“They’re all in their twenties.”

“So we wouldn’t expect any of them to be symptomatic yet. Each of your children has a fifty percent chance of inheriting this mutation, which has a one hundred percent chance of causing the disease. Presymptomatic genetic testing is possible, but there’s a lot to consider. Is this something they’ll want to live with knowing? How would it change their lives? What if one of them is positive and one is negative, how will that affect their relationship with each other? Alice, do they even know about your diagnosis?”

“No.”

“You might want to think about telling them soon. I know it’s a lot to unload all at once, especially since I know you’re both still absorbing it yourselves. But with a progressive illness like this, you can lay out plans to tell them later, but then you may not be able to in the way you originally wanted. Or maybe this is something you’re going to leave to John to do?”

“No, we’ll tell them,” said Alice.

“Do any of your children have children?”

Anna and Charlie.

“Not yet,” said Alice.

“If they’re planning to, this might be really important information for them to have. Here’s some written information I gathered that you can give them if you want. Also, here’s my card and the card of a therapist who’s wonderful with talking to families who’ve gone through genetic screening and diagnosis. Are there any other questions that I can answer for you now?”

“No, none that I can think of.”

“I’m sorry I couldn’t give you the results you were hoping for.”

“Me, too.”

Neither of them spoke. They got in the car, John paid the garage attendant, and they made their way onto Storrow Drive in silence. For the second week in a row, temperatures were well below zero with the windchill. Runners were forced indoors to either jog on treadmills or simply wait for slightly more habitable weather. Alice hated treadmills. She sat in the passenger seat and waited for John to say something. But he didn’t. He cried the whole way home.

A
lice popped open the Monday lid of her plastic days-of-the-week pill dispenser and poured the seven little tablets into her cupped hand. John marched into the kitchen with purpose, but seeing what she held, he spun on his heels and left the room, as if he’d walked in on his mother naked. He refused to watch her take her medications. He could be midsentence, midconversation, but if she got out her plastic days-of-the-week pill dispenser, he left the room. Conversation over.

She swallowed the pills with three gulps of very hot tea and burned her throat. The experience wasn’t exactly pleasant for her either. She sat down at the kitchen table, blew on
her tea, and listened to John stomping through the bedroom above her.

“What are you looking for?” she yelled.

“Nothing,” he hollered.

Probably his glasses. In the month since their visit to the genetic counselor, he’d stopped asking her for help finding his glasses and keys, even though she knew he still struggled to keep track of them.

He entered the kitchen with quick, impatient steps.

“Can I help?” she asked.

“No, I’m good.”

She wondered about the source of this newfound stubborn independence. Was he trying to spare her the mental burden of tracking his own misplaced things? Was he practicing for his future without her? Was he just too embarrassed to ask for help from an Alzheimer’s patient? She sipped her tea, engrossed in a painting of an apple and a pear that had been on the wall for at least a decade, and listened to him sift through the mail and papers on the counter behind her.

He walked past her into the front hallway. She heard the hall closet door open. She heard the hall closet door shut. She heard the drawers in the hall table open and close.

“You ready?” he called.

She finished her tea and met him in the hallway. He had his coat on, glasses perched on his ruffled hair, and his keys in his hand.

“Yes,” said Alice, and she followed him outside.

The beginning of spring in Cambridge was an untrustworthy and ugly liar. There were no buds yet on the trees, no tulips brave or stupid enough to have emerged through the now month-old layer of crusted snow, and no spring peeper audio track playing in the background. The streets
remained narrowed by blackened, polluted snowbanks. Any melting that occurred during the relative warmth of midday froze with the plummeting temperatures of late afternoon, turning the paths in Harvard Yard and the sidewalks of the city into treacherous lanes of black ice. The date on the calendar only made everyone feel offended or cheated, aware that it was already spring elsewhere, and there people wore short-sleeve shirts and awoke to the sounds of robins chirping. Here, the cold and misery showed no signs of relenting, and the only birds Alice heard as they walked to campus were crows.

John had agreed to walk with her to Harvard every morning. She’d told him she didn’t want to risk getting lost. In truth, she simply wanted that time back with him, to rekindle their former morning tradition. Unfortunately, having deemed the risk of being run over by a car less than that of being injured from slipping on the icy sidewalks, they walked single file in the street, and they didn’t talk.

Gravel kicked up into her right boot. She debated whether to stop in the road to empty it out or wait until they reached Jerri’s. To empty it, she’d have to balance in the road on one foot while exposing the other to the frigid air. She decided to endure the discomfort for the remaining two blocks.

Located on Mass Ave about halfway between Porter and Harvard squares, Jerri’s had become a Cambridge institution for the chronically caffeinated long before the invasion of Starbucks. The menu of coffee, tea, pastries, and sandwiches written in chalk capital lettering on the board behind the counter had remained unaltered since Alice’s graduate student days. Only the prices next to the items showed signs of recent attention, outlined with chalk dust in the shape of a rectangular school eraser and printed in a penmanship be
longing to someone other than the author of the offerings to their left. Alice studied the board, perplexed.

“Good morning, Jess, a coffee and a cinnamon scone, please,” said John.

“I’ll have the same,” said Alice.

“You don’t like coffee,” said John.

“Yes, I do.”

“No, you don’t. She’ll have a tea with lemon.”

“I want a coffee and a scone.”

Jess looked to John to see if there would be a return, but the volley was dead.

“Okay, two coffees and two scones,” said Jess.

Outside, Alice took a sip. It tasted acrid and unpleasant and poorly reflected its delicious smell.

“So how’s your coffee?” asked John.

“Wonderful.”

As they walked to campus, Alice drank the coffee she hated to spite him. She couldn’t wait to be alone in her office, where she could throw away what was left of the wretched beverage. Plus, she desperately wanted to empty the gravel out of her boot.

B
OOTS OFF AND COFFEE IN
the trash, she tackled her inbox first. She opened an email from Anna.

She stared down the tauntingly ready, blinking cursor on her computer screen and tried to imagine the words she wanted to use in her reply. The conversion of her thoughts to voice, pen, or computer keys often required conscious effort and calm coaxing. And she held little confidence in the spelling of words she’d long ago been rewarded for her mastery of with gold stars and teachers’ praise.

The phone rang.

“Hi, Mom.”

“Oh good, I was just about to return your email.”

“I didn’t send you an email.”

Unsure of herself, Alice reread the message on her screen.

“I just read it. Charlie has a trial this week—”

“Mom, this is Lydia.”

“Oh, what are you doing up so early?”

“I’m always up now. I wanted to call you and Dad last night, but it was too late your time. I just got an incredible part in a play called
The Memory of Water.
It’s with this phenomenal director, and it’s going up for six shows in May. I think it’s going to be really good, and with this director it should get a lot of attention. I was hoping maybe you and Dad could come out to see me in it?”

Cued by the hanging rise in her inflection and the silence that followed, Alice knew it was her turn to speak but was still catching up to all that Lydia had just said. Without the aid of the visual cues of the person she talked to, conversations on the phone often baffled her. Words sometimes ran together, abrupt changes in topic were difficult for her to anticipate and follow, and her comprehension suffered. Although writing presented its own set of problems, she could keep them hidden from discovery because she wasn’t restricted to real-time responding.

“If you don’t want to, you can just say it,” said Lydia.

“No, I do, but—”

“Or you’re too busy, whatever. I knew I should’ve called Dad.”

“Lydia—”

“Never mind, I gotta go.”

She hung up. Alice had been about to say that she needed to check with John, that if he could break away from the lab, she’d love to come. If he couldn’t go, however, she wouldn’t fly across the country without him, and she’d have to make up some excuse. Fearful of getting lost or confused far from home, she’d been avoiding travel. She’d declined an offer to speak at Duke University next month and thrown out the registration material for a language conference she’d attended every year since she was a graduate student. She wanted to see Lydia’s play, but this time, her attendance would be at the mercy of John’s availability.

She held the phone, thinking about trying to call Lydia back. She hung up, thinking better of it. She closed her unwritten reply to Anna and opened a new email to send to Lydia. She stared at the blinking cursor, her fingers frozen on the keyboard. The battery in her brain was running low today.

“Come on,” she urged, wishing she could attach a couple of jumper cables to her head and give herself a good, strong zap.

She didn’t have time for Alzheimer’s today. She had emails to return, a grant proposal to write, a class to teach, and a seminar to attend. And at the end of the day, a run. Maybe a run would give her some clarity.

A
LICE TUCKED A PIECE OF
paper with her name, address, and phone number in her sock. Of course, if she became so confused that she didn’t know her way home, she might not have the presence of mind to remember that she carried this piece of helpful information on her person. But it was a precaution she took anyway.

Running was becoming less and less effective at clearing her thoughts. In fact, these days, she felt more like she was physically chasing down the answers to an interminable stream of runaway questions. And no matter how hard she kicked, she could never catch them.

What should I be doing?
She took her medications, slept for six to seven hours a night, and clung to the normalcy of day-to-day life at Harvard. She felt like a fraud, posing as a Harvard professor without a progressive neurodegenerative disease, working every day as if everything were just fine and would continue that way.

There weren’t a lot of metrics for performance or day-today accountability in the life of a professor. She didn’t have books to balance, a certain quota of widgets to make, or written reports to hand in. There was room for error, but how much? Ultimately, her functioning would deteriorate to a level that would be noticed and not tolerated. She wanted to leave Harvard before then, before the gossip and pity, but had no way of even guessing when that would be.

And although the thought of staying on too long terrified her, the thought of leaving Harvard terrified her much, much more. Who was she if she wasn’t a Harvard psychology professor?

Should she try to spend as much time as possible with John and her children? What would that mean practically? Sit with Anna while she typed her briefs, shadow Tom on his
rounds, observe Lydia in acting class? How was she supposed to tell them that they each had a 50 percent chance of going through this? What if they blamed and hated her like she blamed and hated her father?

It was too soon for John to retire. How much time could he realistically take off without killing his own career? How much time did she have? Two years? Twenty?

Although Alzheimer’s tended to progress more quickly in the early-onset versus late-onset form, people with early-onset usually lived with the disease for many years longer, this disease of the mind residing in relatively young and healthy bodies. She could stick around all the way to the brutal end. She’d be unable to feed herself, unable to talk, unable to recognize John and her children. She’d be curled up in the fetal position, and because she’d forget how to swallow, she’d develop pneumonia. And John, Anna, Tom, and Lydia would agree not to treat it with a simple course of antibiotics, riddled with guilt over feeling grateful that something had finally come along that would kill her body.

She stopped running, bent over, and threw up the lasagna she’d eaten for lunch. It would be several more weeks before the snow melted enough to wash it away.

S
HE KNEW EXACTLY WHERE SHE
was. She was on her way home, in front of the All Saints’ Episcopal Church, only a few blocks from her house. She knew exactly where she was but had never felt more lost in her life. The bells of the church began to chime to a tune that reminded her of her grandparents’ clock. She turned the round, iron knob on the tomato red door and followed her impulse inside.

She was relieved to find no one there, because she hadn’t
formulated a coherent story as to why she was. Her mother was Jewish, but her father had insisted that she and Anne be raised Catholic. So she went to mass every Sunday as a child, received communion, went to confession, and was confirmed, but because her mother never participated in any of this, Alice began questioning the validity of these beliefs at a young age. And without a satisfying answer from either her father or the Catholic Church, she never developed a true faith.

Light from the streetlamps outside streamed in through the Gothic stained-glass windows and provided almost enough illumination for her to see the entire church. In each of the stained-glass windows, Jesus, clad in robes of red and white, was pictured as a shepherd or a healer performing a miracle. A banner to the right of the altar read
GOD IS OUR REFUGE AND STRENGTH, A VERY PRESENT HELP IN TROUBLE.

She couldn’t be in more trouble and wanted so much to ask for help. But she felt like a trespasser, undeserving, unfaithful. Who was she to ask for help from a God she wasn’t sure she believed in, in a church she knew nothing about?

She closed her eyes, listened to the calming, oceanlike waves of distant traffic, and tried to open her mind. She couldn’t say how long she sat in the velvet-cushioned pew in that cold, darkened church, waiting for an answer. It didn’t come. She stayed longer, hoping a priest or parishioner would wander in and ask her why she was there. Now, she had her explanation. But no one came.

She thought about the business cards she’d been given from Dr. Davis and Stephanie Aaron. Maybe she should talk to the social worker or a therapist. Maybe they could help her.
Then, with complete and simple lucidity, the answer came to her.

Talk to John.

S
HE FOUND HERSELF UNARMED FOR
the attack she faced when she walked through the front door.

“Where have you been?” asked John.

“I went for a run.”

“You’ve been running, this whole time?”