Still Alice (7 page)

Lydia in her itchy, powder blue costume at her first dance recital. That was pretenure, Anna was in junior high and in braces, Tom was lovesick over a girl on his baseball
team, and John lived in Bethesda, on sabbatical for the year.

The only ones she had any real trouble with were the baby pictures of Anna and Lydia, their flawless, pudgy faces often indistinguishable. She could usually find clues, however, that revealed their identities. John’s muttonchop sideburns placed him solidly in the 1970s. The baby in his lap had to be Anna.

“John, who’s this?” she asked, holding up a picture of a baby.

He looked up from the journal he’d been reading, slid his glasses down his nose, and squinted.

“Is that Tom?”

“Honey, she’s in a pink onesie. It’s Lydia.”

She checked the Kodak-printed date on the back to be sure. May 29, 1982. Lydia.

“Oh.”

He pushed his glasses back up onto the bridge of his nose and resumed reading.

“John, I’ve been meaning to talk to you about Lydia’s acting classes.”

He looked up, dog-eared the page, set the journal on the table, folded his glasses, and settled back in the chair. He knew this wouldn’t be quick.

“All right.”

“I don’t think we should be supporting her out there in any way, and I certainly don’t think you should be paying for her classes behind my back.”

“I’m sorry, you’re right, I meant to tell you, but then I got busy and forgot, you know how it gets. But I disagree with you on this, you know I do. We supported the other two.”

“That’s different.”

“It’s not. You just don’t like what she picked.”

“It’s not the acting. It’s the not going to college. The window of time she’s likely to ever go is rapidly closing, John, and you’re making it easier for her to stay out.”

“She doesn’t want to go to college.”

“I think she’s just rebelling against who we are.”

“I don’t think it has anything to do with what we want or don’t want or who we are.”

“I want more for her.”

“She’s working hard, she’s excited and serious about what she’s doing, she’s happy. That’s what we want for her.”

“It’s our job to pass on our wisdom about life to our kids. I’m really afraid she’s missing out on something essential. The exposure to different subjects, different ways of thinking, the challenges, opportunities, the people you meet. We met in college.”

“She’s getting all that.”

“It’s not the same.”

“So it’s different. I think paying for her classes is more than fair. I’m sorry I didn’t tell you, but you’re hard to talk to about this. You don’t ever budge.”

“Neither do you.”

He glanced at the clock on the fireplace mantel, reached for his glasses, and placed them on top of his head.

“I’ve got to go to lab for about an hour, then I’ll pick her up at the airport. You need anything while I’m out?” he asked as he stood to leave.

“No.”

They locked eyes.

“She’s going to be fine, Ali, don’t worry.”

She raised her eyebrows but didn’t say anything. What else could she say? They’d played this scene out together before, and this was how it ended. John argued the logical path of
least resistance, always maintaining his status as the favorite parent, never convincing Alice to switch over to the popular side. And nothing she said swayed him.

John left the house. Relaxed in his absence, she returned to the pictures in her lap. Her adorable children as babies, toddlers, teenagers. Where did the time go? She held the baby picture of Lydia that John had guessed was Tom. She felt a renewed and reassuring confidence in the strength of her memory. But of course, these pictures only opened the doors to histories housed in long-term memories.

John Black’s address would have lived in recent memory. Attention, rehearsal, elaboration, or emotional significance was needed if perceived information was to be pushed beyond the recent memory space into longer-term storage, else it would be quickly and naturally discarded with the passage of time. Focusing on Dr. Davis’s questions and instructions had divided her attention and prevented her from rehearsing or elaborating on the address. And although his name elicited a bit of fear and anger now, the fictitious John Black had meant nothing to her in Dr. Davis’s examining room. Under these circumstances, the average brain would be quite susceptible to forgetting. Then again, she didn’t have an average brain.

She heard the mail drop through the slot in the front door and had an idea. She looked at each item once—a baby wearing a Santa hat pictured on a holiday greeting card from a former graduate student, an advertisement for a fitness club, the phone bill, the gas bill, yet another L.L.Bean catalog. She returned to the couch, drank her tea, stacked the photo albums back on the shelf, and then sat very still. The ticking clock and brief eruptions of steam from various radiators made the only sounds in the house. She stared at the clock. Five minutes passed. Long enough.

Without looking at the mail, she said aloud, “Baby in Santa hat card, gym membership offering, phone bill, gas bill, another L.L.Bean catalog.”

Piece of cake.
But to be fair, the time between being presented with John Black’s address and being asked to recall it had been much longer than five minutes. She needed an extended delay interval.

She grabbed the dictionary off the shelf and devised two rules for picking a word. It had to be low frequency, one she didn’t use every day, and it had to be a word that she already knew. She was testing her recent memory, not learning acquisition. She opened the dictionary to an arbitrary page and put her finger down on the word “berserk.” She wrote it on a piece of paper, folded it, put it in her pants pocket, and set the timer on the microwave for fifteen minutes.

One of Lydia’s favorite books when she was a toddler was
Hippos Go Berserk!
Alice went about the business of readying for Christmas Eve dinner. The timer beeped.

“Berserk,” without hesitation or needing to consult the piece of paper.

She continued playing this game throughout the day, increasing the number of words to remember to three and the delay period to forty-five minutes. Despite this added degree of difficulty and the added likelihood of interference from the distraction of dinner preparation, she remained error-free.
Stethoscope, millennium, hedgehog.
She made the ricotta raviolis and the red sauce.
Cathode, pomegranate, trellis.
She tossed the salad and marinated the vegetables.
Snapdragon, documentary, vanish.
She put the roast in the oven and set the dining room table.

Anna, Charlie, Tom, and John sat in the living room. Alice could hear Anna and John arguing. She couldn’t make out the
topic from the kitchen, but she could tell it was an argument by the emphasis and volume of the back-and-forth. Probably politics. Charlie and Tom were staying out of it.

Lydia stirred the hot mulled cider on the stove and talked about her acting classes. Between concentrating on making dinner, the words she needed to remember, and Lydia, Alice didn’t have the mental reserve to protest or disapprove. Uninterrupted, Lydia spoke in a free and passionate monologue about her craft, and despite Alice’s strong bias against it, she found she couldn’t resist being interested.

“After the imagery, you layer on the Elijah question, ‘Why this night rather than any other?’” said Lydia.

The timer beeped. Lydia stepped aside without being asked, and Alice peeked in the oven. She waited for an explanation from the undercooked roast long enough for her face to become uncomfortably hot.
Oh.
It was time to recall the three words in her pocket.
Tambourine, serpent…

“You’re never playing everyday life as usual, the stakes are always life and death,” said Lydia.

“Mom, where’s the wine opener?” Anna hollered from the living room.

Alice struggled to ignore her daughters’ voices, the ones her mind had been trained to hear above all other sounds on the planet, and to concentrate on her own inner voice, the one repeating the same two words like a mantra.

Tambourine, serpent, tambourine, serpent, tambourine, serpent.

“Mom?” asked Anna.

“I don’t know where it is, Anna! I’m busy, look for it yourself.”

Tambourine, serpent, tambourine, serpent, tambourine, serpent.

“It’s always about survival when you boil it down. What does my character need to survive and what will happen to me if I don’t get it?” said Lydia.

“Lydia, please, I don’t want to hear about this right now,” Alice snapped, holding her sweaty temples.

“Fine,” said Lydia. She turned herself squarely toward the stove and stirred vigorously, obviously hurt.

Tambourine, serpent.

“I still can’t find it!” yelled Anna.

“I’ll go help her,” said Lydia.

Compass! Tambourine, serpent, compass.

Relieved, Alice took out the ingredients for the white-chocolate bread pudding and placed them on the counter—vanilla extract, a pint of heavy cream, milk, sugar, white chocolate, a loaf of challah bread, and two half-dozen cartons of eggs.
A dozen eggs?
If the piece of notebook paper with her mother’s recipe on it still existed, Alice didn’t know where it was. She hadn’t needed to refer to it in years. It was a simple recipe, arguably better than Marty’s cheesecake, and she’d made it every Christmas Eve since she was a young girl. How many eggs? It had to be more than six, or she would’ve taken out only one carton. Was it seven, eight, nine?

She tried skipping over the eggs for a moment, but the other ingredients looked just as foreign. Was she supposed to use all of the cream or measure out only some of it? How much sugar? Was she supposed to combine everything all at once or in a particular sequence? What pan did she use? At what temperature did she bake it and for how long? No possibility rang true. The information just wasn’t there.

What the hell is wrong with me?

She revisited the eggs. Still nothing. She hated those fucking eggs. She held one in her hand and threw it as hard as
she could into the sink. One by one, she destroyed them all. It was marginally satisfying, but not enough. She needed to break something else, something that required more muscle, something that would exhaust her. She scanned the kitchen. Her eyes were furious and wild when they met Lydia’s in the doorway.

“Mom, what are you doing?”

The massacre had not been confined to the sink. Empty shards of shell and yolk were splattered all over the wall and counter, and the faces of the cabinets were streaked with tears of albumen.

“The eggs were past the expiration date. There’s no pudding this year.”

“Aw, we have to have the pudding, it’s Christmas Eve.”

“Well, there aren’t any more eggs, and I’m tired of being in this hot kitchen.”

“I’ll go to the store. Go into the living room and relax, I’ll make the pudding.”

Alice walked into the living room, shaking but no longer riding that powerful wave of anger, not sure whether she was feeling deprived or thankful. John, Tom, Anna, and Charlie were all seated and in conversation, holding glasses of red wine. Apparently, someone had found the opener. With her coat and hat on, Lydia poked her head into the room.

“Mom, how many eggs do I need?”

S
he had good reasons to cancel her appointments on the morning of January nineteenth with the neuropsychologist and Dr. Davis. Harvard’s exam week for the fall semester fell in January, after the students returned from Winter Break, and the final exam for Alice’s cognition class was scheduled for that morning. Her attendance wasn’t crucial, but she liked the sense of closure that being there provided, of seeing her students through the course from start to finish. With some reluctance, she arranged for a teaching fellow to proctor the exam. The bigger good reason was that her mother and sister had died on January nineteenth, thirty-two years ago. She didn’t consider herself superstitious like John, but she’d never received good
news on that day. She’d asked the receptionist for another date, but it was either then or four weeks from then. So she took it, and she didn’t cancel. The idea of waiting another month was that unappealing.

She imagined her students back at Harvard, nervous about what questions they would be asked, hurrying a semester’s worth of knowledge onto the pages of their blue exam books, hoping their heavily crammed short-term memories wouldn’t fail them. She understood exactly how they felt. Most of the neuropsychological tests administered to her that morning—Stroop, Raven’s Colored Progressive Matrices, Luria Mental Rotation, Boston Naming, WAIS-R Picture Arrangement, Benton Visual Retention, NYU Story Recall—were familiar to her. They were designed to tease out any subtle weakness in the integrity of language fluency, recent memory, and reasoning processes. She had, in fact, taken many of them before, serving as a negative control in the cognition studies of various graduate students. But today, she wasn’t a control. She was the subject being tested.

The copying, recalling, arranging, and naming took almost two hours to complete. Like the students she imagined, she felt relieved to be done and fairly confident in her performance. Escorted by the neuropsychologist, Alice entered Dr. Davis’s office and sat in one of the two chairs arranged side by side, facing him. He acknowledged the empty chair next to her with a disappointed sigh. Even before he spoke, she knew she was in trouble.

“Alice, didn’t we talk about you coming here with someone last time?”

“We did.”

“Okay, it’s a requirement of this unit that every patient comes in with someone who knows them. I won’t be able to
treat you properly unless I have an accurate picture of what’s going on, and I can’t be sure I have that information without this person present. Next time, Alice, no excuses. Do you agree to this?”

“Yes.”

Next time. Any solid relief and confidence generated from her self-evaluated competence in the neuropsychological exams evaporated.

“I have the results of all of your tests now, so we can go over everything. I don’t see anything abnormal in your MRI. No cerebral vascular disease, no evidence of any small, silent strokes, no hydrocephalus or masses. Everything there looks fine. And your blood work and lumbar puncture all came back negative as well. I was as aggressive here as we can be and looked for every condition that could sensibly account for the kinds of symptoms you’re experiencing. So we know you don’t have HIV, cancer, a vitamin deficiency, mitochondrial disease, or a number of other rare conditions.”

His speech was well constructed, obviously not his first delivery of its kind. The “what she did have” would come at the end. She nodded, letting him know that she followed him and that he should continue.

“You scored in the ninety-ninth percentile in your ability to attend, in things like abstract reasoning, spatial skills, and language fluency. But unfortunately, here’s what I do see. You have a recent memory impairment that is out of proportion to your age and is a significant decline in your previous level of functioning. I know this from your own account of the problems you’ve been having and from your description of the degree to which they’ve been interfering with your professional life. I also personally witnessed it when you couldn’t retrieve the address I’d asked you to remember the last time you were
here. And although you were perfect in most of the cognitive domains today, you showed a lot of variability in two of the tasks that were related to recent memory. In fact, you were down to the sixtieth percentile in one.

“When I put all of this information together, Alice, what it tells me is that you fit the criteria of having probable Alzheimer’s disease.”

Alzheimer’s disease.

The words knocked the wind out of her. What exactly did he just tell her? She repeated his words in her head.
Probable.
It gave her the will to inhale, the ability to speak.

“So ‘probable’ means that I might not fit the criteria.”

“No, we use the word ‘probable’ because the only definitive diagnosis for Alzheimer’s right now is by examining the histology of the brain tissue, which requires either an autopsy or a biopsy, neither of which is a good option for you. It’s a clinical diagnosis. There’s no dementia protein in your blood that can tell us you have it, and we wouldn’t expect to see any brain atrophy on an MRI until much later stages in the disease.”

Brain atrophy.

“But this can’t be possible, I’m only fifty.”

“You have early-onset Alzheimer’s. You’re right, we typically think of Alzheimer’s as a disease that affects the elderly, but ten percent of people with Alzheimer’s have this early-onset form and are under the age of sixty-five.”

“How is that different from the older form?”

“It’s not, except that its cause usually has a strong genetic linkage, and it manifests much earlier.”

Strong genetic linkage. Anna, Tom, Lydia.

“But if you only know for sure what I don’t have, how can you say with any certainty that this is Alzheimer’s?”

“After listening to you describe what’s been happening
and to your medical history, after testing your orientation, registration, attention, language, and recall, I was ninety-five percent sure. With no other explanation turning up in your neurological exam, blood, cerebral spinal fluid, or MRI, the other five percent goes away. I’m sure, Alice.”

Alice.

The sound of her name penetrated her every cell and seemed to scatter her molecules beyond the boundaries of her own skin. She watched herself from the far corner of the room.

“So what does this mean?” she heard herself ask.

“We have a couple of drugs for treating Alzheimer’s now that I want to put you on. The first is Aricept. It boosts cholinergic functioning. The second is Namenda. It was just approved this fall and has shown a lot of promise. Neither of these is a cure, but they can slow the progression of symptoms, and we want to buy you as much time as possible.”

Time. How much time?

“I also want you to take vitamin E twice a day and vitamin C, baby aspirin, and a statin once a day. You don’t show any clear risk factors for cardiovascular disease, but anything that’s good for the heart is going to be good for the brain, and we want to preserve every neuron and synapse we can.”

He wrote this information down on a prescription pad.

“Alice, does anyone in your family know that you’re here?”

“No,” she heard herself say.

“Okay, you’re going to have to tell someone. We can slow the rate of cognitive decline that you’ve been experiencing, but we can’t stop it or reverse it. It’s important to your safety that someone who sees you regularly knows what’s going on. Will you tell your husband?”

She saw herself nod.

“Okay, good. Then fill these prescriptions, take everything as directed, call me if you have any problems with side effects, and make an appointment to come back in six months. Between now and then, you can call or email me if you have any questions, and I would also encourage you to contact Denise Daddario. She’s the social worker here and can help you with resources and support. I’ll see you and your husband together then in six months, and we’ll look at how you’re doing.”

She searched his intelligent eyes for something else. She waited. She became strangely aware of her hands clenching the cold metal arms of the chair she sat in.
Her
hands. She hadn’t become an ethereal collection of molecules hovering in the corner of the room. She, Alice Howland, was sitting on a cold, hard chair next to an empty chair in a neurologist’s office in the Memory Disorders Unit on the eighth floor of Massachusetts General Hospital. And she’d just been diagnosed with Alzheimer’s disease. She searched her doctor’s eyes for something else, but could find only truth and regret.

January nineteenth. Nothing good ever happened on that day.

I
N HER OFFICE WITH THE
door shut, she read through the Activities of Daily Living questionnaire that Dr. Davis had told her to give to John.
This should be filled out by an informant, NOT the patient
was typed in bold at the top of the first page. The word
informant,
the closed door, and her pounding heart all contributed to a feeling of conspicuous guilt, like she was hiding in some Eastern European city, in possession of illegal documents, and the police were on their way, sirens blaring.

The rating scale for each activity ranged from 0 (no prob
lems, same as always) to 3 (severely impaired, totally dependent on others). She scanned down the descriptions next to the 3s and assumed they represented the end stages of this disease, the end of this straight and short road that she’d been suddenly forced onto in a car with no brakes and no steering.

Number 3 was a humiliating list: Must be fed most foods. Has no control over bowel or bladder. Must be given medication by others. Resists efforts of caretaker to clean or groom. No longer works. Home or hospital bound. No longer handles money. No longer goes out unaccompanied. Humiliating, but her analytical mind became instantly skeptical of the actual relevance of this list to her individual outcome. How much of this list was due to the progression of Alzheimer’s disease and how much was confounded by the overwhelmingly elderly population it described? Were the eighty-year-olds incontinent because they had Alzheimer’s or because they had eighty-year-old bladders? Perhaps these 3s wouldn’t apply to someone like her, someone so young and physically fit.

The worst of it came under the heading “Communications.” Speech is almost unintelligible. Does not understand what people are saying. Has given up reading. Never writes.
No more language.
Other than misdiagnosis, she couldn’t formulate a hypothesis that would render her immune to this list of 3s. It could all apply to someone like her. Someone with Alzheimer’s.

She looked at the rows of books and periodicals on her bookcase, the stack of final exams to be corrected on her desk, the emails in her inbox, the red, flashing voice-mail light on her phone. She thought about the books she’d always wanted to read, the ones adorning the top shelf in her bedroom, the ones she figured she’d have time for later.
Moby-Dick.
She had experiments to perform, papers to write, and lectures to
give and attend. Everything she did and loved, everything she was, required language.

The last pages of the questionnaire asked the informant to rate the severity of the following symptoms experienced by the patient in the past month: delusions, hallucinations, agitation, depression, anxiety, euphoria, apathy, disinhibition, irritability, repetitive motor disturbances, sleep disruptions, changes in eating. She felt tempted to fill in the answers herself, to demonstrate that she was actually perfectly fine and that Dr. Davis must be wrong. Then she remembered his words:
You may not be the most reliable source of what’s been going on.
Maybe, but then she still remembered he’d said that. She wondered when the time would come that she wouldn’t.

Her knowledge of Alzheimer’s disease admittedly swept the surface only lightly. She knew that the brains of Alzheimer’s patients had reduced levels of acetylcholine, a neurotransmitter important in learning and memory. She also knew that the hippocampus, a sea-horse-shaped structure in the brain critical for the formation of new memories, became mired in plaques and tangles, although she didn’t really understand what plaques and tangles were exactly. She knew that anomia, a pathological tip of the tongue, was another hallmark symptom. And she knew that someday, she’d look at her husband, her children, her colleagues, faces she’d known and loved forever, and she wouldn’t recognize them.

And she knew there was more. There were layers of disturbing filth to uncover. She typed the words “Alzheimer’s disease” into Google. Her middle finger was poised over the return key when two jolting knocks caused her to abort the mission with the speed of an involuntary reflex and hide the evidence. Without further warning or waiting for an answer, the door opened.

She feared her face read stunned, anxious, devious.

“Are you ready?” asked John.

No, she wasn’t. If she confessed to John what Dr. Davis had told her, if she gave him the Activities of Daily Living questionnaire, it would all become real. John would become the informant, and Alice would become the dying, incompetent patient. She wasn’t ready to turn herself in. Not yet.

“Come on, the gates close in an hour,” said John.

“Okay,” said Alice. “I’m ready.”

F
OUNDED IN
1831
AS
A
MERICA’S
first nonsectarian garden cemetery, Mount Auburn was now a National Historic Landmark, a world-renowned arboretum and horticultural landscape, and the final resting place for Alice’s sister, mother, and father.

This was the first time that her father would be present on the anniversary of that fateful car accident, dead or otherwise, and it irritated her. This had always been a private visit between her and her mother and sister. Now, he would be there, too. He didn’t deserve to be.