by Lisa Genova
Accepting the fact that she did indeed have Alzheimer’s, that she could only bank on two unacceptably effective drugs available to treat it, and that she couldn’t trade any of this in for some other, curable disease, what did she want? Assuming the in vitro procedure worked, she wanted to live to hold Anna’s baby and know it was her grandchild. She wanted to see Lydia act in something she was proud of. She wanted to see Tom fall in love. She wanted one more sabbatical year with John. She wanted to read every book she could before she could no longer read.
She laughed a little, surprised at what she’d just revealed to herself. Nowhere in that list was there anything about linguistics, teaching, or Harvard. She ate her last bite of cone. She wanted more sunny, seventy-degree days and ice-cream cones.
And when the burden of her disease exceeded the pleasure of that ice cream, she wanted to die. But would she quite literally have the presence of mind to recognize it when those curves crossed? She worried that the future her would be incapable of remembering and executing this kind of plan. Asking John or any of her children to assist her with this in any way was not an option. She’d never put any of them in that position.
She needed a plan that committed the future her to a suicide she arranged for now. She needed to create a simple test, one that she could self-administer every day. She thought about the questions Dr. Davis and the neuropsychologist had asked her, the ones she already couldn’t answer last December. She thought about what she still wanted. Intellectual brilliance wasn’t required for any of them. She was willing to go on living with some serious holes in short-term memory.
She removed her BlackBerry from her baby blue Anna William bag, a birthday gift from Lydia. She wore it every day, slung over her left shoulder, resting on her right hip. It had become an indispensable accessory, like her platinum wedding ring and running watch. It looked great with her butterfly necklace. It contained her cell phone, her BlackBerry, and her keys. She took it off only to sleep.
She typed:
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?
If you have trouble answering any of these, go to the file named “Butterfly” on your computer and follow the instructions there immediately.
She set the alarm to vibrate and to appear as a recurring reminder every morning on her appointment calendar at 8:00, no end date. She realized that there were a lot of potential problems with this design, that it was by no means foolproof. She just hoped she opened “Butterfly” before she became that fool.
SHE PRACTICALLY RAN TO CLASS, worried that she was most certainly late, but nothing had started without her when she got there. She took an aisle seat, four rows back, left of center. A few students trickled in through the doors at the back of the room, but for the most part, the class was there, ready. She looked at her watch. 10:05. The clock on the wall agreed. This was most unusual. She kept herself busy. She looked over the syllabus and skimmed her notes from last class. She made a to-do list for the rest of the day:
Lab
Seminar
Run
Study for final
Time, 10:10. She tapped her pen to the tune of “My Sharona.”
The students stirred, becoming restless. They checked notebooks and the clock on the wall, they flipped through textbooks and shut them, they booted up laptops and clicked and typed. They finished their coffees. They crinkled wrappers belonging to candy bars and chips and various other snacks and ate them. They chewed pen caps and fingernails. They twisted their torsos to search the back of the room, they leaned to consult friends in other rows, they raised eyebrows and shrugged shoulders. They whispered and giggled.
“Maybe it’s a guest lecturer,” said a girl who sat a couple of rows behind Alice.
Alice unfolded her motivation and emotion syllabus again. Tuesday, May 4: Stress, Helplessness and Control (chapters 12 and 14). Nothing about a guest lecturer. The energy in the room converted from expectant to awkward dissonance. They were like corn kernels on a hot stove. Once that first one popped, the rest would follow, but no one knew which one would be first or when. The formal rule at Harvard stated that students were required to wait twenty minutes for a tardy professor before the class was officially canceled. Unafraid of going first, Alice closed her notebook, capped her pen, and slid everything into her book bag. 10:21. Long enough.
As she turned to leave, she looked at the four girls who sat behind her. They all looked up at her and smiled, probably grateful to her for releasing the pressure and setting them free. She held up her wrist, displaying the time as her irrefutable data.
“I don’t know about you guys, but I have better things to do.”
She walked up the stairs, exited the auditorium through the back doors, and never looked back.
SHE SAT IN HER OFFICE and watched the shiny rush-hour traffic creep along Memorial Drive. Her hip vibrated. It was 8:00 a.m. She removed her BlackBerry from her baby blue bag.
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?
If you have trouble answering any of these, go to the file named “Butterfly” on your computer and follow the instructions there immediately.
May
34 Poplar Street, Cambridge, MA 02138
William James Hall, room 1002
September 14, 1976
Three
JUNE 2004
An unmistakably elderly woman with hot pink nails and lips tickled a little girl, about five years old, presumably the woman’s granddaughter. Both looked to be having a grand old time. The advertisement read: “THE #1 TUMMY TICKLER takes the #1 prescribed Alzheimer’s drug.” Alice had been flipping through Boston magazine but was unable to move past this page. A hatred of that woman and the ad filled her like a hot liquid. She studied the picture and the words, waiting for her thoughts to catch up to what her gut understood, but before she could figure out why she felt so personally antagonized, Dr. Moyer opened the door to the examining room.
“So Alice, I see you’re having some difficulty sleeping. Tell me what’s going on.”
“It’s taking me well over an hour to get to sleep, and then I usually wake up a couple of hours after that and go through the whole thing all over again.”
“Are you experiencing any hot flashes or physical discomfort at bedtime?”
“No.”
“What medications are you taking?”
“Aricept, Namenda, Lipitor, vitamins C and E, and aspirin.”
“Well, unfortunately, insomnia can be a side effect of the Aricept.”
“Right, but I’m not going off Aricept.”
“Tell me what you do when you can’t get to sleep.”
“Mostly I lie there and worry. I know this is going to get a lot worse, but I don’t know when, and I worry that I might go to sleep and wake up the next morning and not know where I am or who I am or what I do. I know it’s irrational, but I have this idea that the Alzheimer’s can only kill off my brain cells when I’m asleep, and that as long as I’m awake and sort of on watch, I’ll stay the same.
“I know all this anxiety keeps me up, but I can’t seem to help it. As soon as I can’t fall asleep, I worry, and then I can’t sleep because I’m worried. It’s exhausting just telling you about it.”
Only some of what she’d just said was true. She did worry. But she’d been sleeping like a baby.
“Are you overcome with this kind of anxiety at any other time of the day?” asked Dr. Moyer.
“No.”
“I could prescribe you an SSRI.”
“I don’t want to go on an antidepressant. I’m not depressed.”
The truth was
, she might be a little depressed. She’d been diagnosed with a fatal, incurable illness. So had her daughter. She’d almost entirely stopped traveling, her once dynamic lectures had become unbearably boring, and even on the rare occasion when he was home with her, John seemed a million miles away. So yes, she was a little sad. But that seemed an appropriate response given the situation and not a reason to add yet another medication, with more side effects, to her daily intake. And it wasn’t what she’d come here for.
“We could try you on Restoril, one each night at bedtime. It’ll get you to sleep quickly and allow you to stay asleep for about six hours, and you shouldn’t wake up groggy in the morning.”
“I’d like something stronger.”
There was a long pause.
“I think I’d like you to make an appointment to come back in with your husband, and we can talk about prescribing something stronger.”
“This doesn’t concern my husband. I’m not depressed, and I’m not desperate. I’m aware of what I’m asking for, Tamara.”
Dr. Moyer studied her face carefully. Alice studied hers. They were both older than forty, younger than old, both married, highly educated professional women. Alice didn’t know her doctor’s politics. She’d see another doctor if she had to. Her dementia was going to get worse. She couldn’t risk waiting any longer. She might forget.
She had rehearsed additional dialogue but didn’t need to use it. Dr. Moyer got out her prescription pad and began to write.
SHE WAS BACK IN THAT tiny testing room with Sarah Something, the neuropsychologist. She’d reintroduced herself to Alice just a moment ago, but Alice had promptly forgotten her last name. Not a good omen. The room, however, was as she remembered it from January—cramped, sterile, and impersonal. It contained one desk with an iMac computer on it, two cafeteria chairs, and a metal file cabinet. Nothing else. No windows, no plants, no pictures or calendar on the walls or desk. No distractions, no possible hints, no chance associations.
Sarah Something began with what felt almost like regular conversation.
“Alice, how old are you?”
“Fifty.”
“When did you turn fifty?”
“October eleventh.”
“And what time of year is this?”
“Spring, but it already feels like summer.”
“I know, it’s hot out there today. And where are we right now?”
“In the Memory Disorders Unit at Mass General Hospital, in Boston, Massachusetts.”
“Can you name the four things shown in this picture?”
“A book, a phone, a horse, and a car.”
“And what is this thing on my shirt?”
“A button.”
“And this thing on my finger?”
“A ring.”
“Can you spell ‘water’ backwards for me?”
“R-E-T-A-W.”
“And repeat this after me: Who, what, when, where, why.”
“Who, what, when, where, why.”
“Can you lift your hand, close your eyes, and open your mouth?”
She did.
“Alice, what were those four objects in the picture you named before?”
“A horse, a car, a phone, and a book.”
“Great, and write a sentence for me here.”
I cannot believe that I won’t be able to do this someday.
“Great, now name for me as many words as you can in a minute that begin with the letter s.”
“Sarah, something, stupid, sound. Survive, sick. Sex. Serious. Something. Oops, I said that. Said. Scared.”
“Now name as many words as you can that begin with the letter f.”
“Forget. Forever. Fun. Fight, flight, fit. Fuck.” She laughed, surprised at herself. “Sorry about that one.”
Sorry begins with s.
“That’s okay, I get that one a lot.”
Alice wondered how many words she would’ve been able to rattle off a year ago. She wondered how many words per minute were considered normal.
“Now, name as many vegetables as you can.”
“Asparagus, broccoli, cauliflower. Leeks, onion. Pepper. Pepper, I don’t know, I can’t think of any more.”
“Last one, name as many animals with four legs as you can.”
“Dogs, cats, lions, tigers, bears. Zebras, giraffes. Gazelle.”
“Now read this sentence aloud for me.”
Sarah Something handed her a sheet of paper.
“On Tuesday, July second, in Santa Ana, California, a wildfire shut down John Wayne Airport, stranding thirty travelers, including six children and two firemen,” Alice read.
It was an NYU story, a test of declarative memory performance.
“Now, tell me as many details as you can about the story you just read.”
“On Tuesday, July second, in Santa Ana, California, a fire stranded thirty people in an airport, including six children and two firemen.”
“Great. Now, I’m going to show you a series of pictures on cards, and you’re going to just tell me the names of them.”
The Boston Naming Exam.
“Briefcase, pinwheel, telescope, igloo, hourglass, rhinoceros.” A four-legged animal. “Racquet. Oh, wait, I know what it is, it’s a ladder for plants, a lattice? No. A trellis! Accordion, pretzel, rattle. Oh, wait, again. We have one in our yard at the Cape. It’s between the trees, you lie on it. It’s not a hangar. It’s a, halyard? No. Oh god, it begins with h, but I can’t get it.”
Sarah Something made a notation on her score sheet. Alice wanted to argue that her omission could just as easily have been a normal case of blocking as a symptom of Alzheimer’s. Even perfectly healthy college students typically experienced one to two tips of the tongue per week.
“That’s okay, let’s keep going.”
Alice named the rest of the pictures without further difficulties, but she still couldn’t activate the neuron that encoded the missing name of the napping net. Theirs hung between the two spruce trees in their yard in Chatham. Alice remembered many late afternoon naps there with John, the pleasure of the breezy shade, the intersection of his chest and shoulder her pillow, the familiar scent of their fabric softener on his cotton shirt combined with the summer smells of his sunburned and ocean-salty skin intoxicating her every inhalation. She could remember all of that, but not the name of the damn h-thing they lay on.
She sailed through the WAIS-R Picture Arrangement test, Raven’s Colored Progressive Matrices, the Luria Mental Rotation test, the Stroop test, and copying and remembering geometric figures. She checked her watch. She’d been in that little room for just over an hour.
“Okay, Alice, now I’d like you to think back to that short story you read earlier. What can you tell me about it?”
She swallowed her panic, and it lodged, heavy and hulking, right above her diaphragm, making it uncomfortable to breathe. Either her pathways to the details of the story were impassable or she lacked the electrochemical strength to knock loudly enough on the neurons housing them to be heard. Outside of this closet, she could look up lost information in her BlackBerry. She could reread her emails and write herself reminders on Post-it notes. She could rely on the default respect her Harvard position embodied. Outside of this little room, she could hide her impassable pathways and wimpy neural signals. And although she knew that these tests were designed to unveil what she couldn’t access, she was caught unsuspecting and embarrassed.
“I don’t really remember much.”
There it was, her Alzheimer’s, stripped and naked under the fluorescent lighting, on display for Sarah Something to scrutinize and judge.
“That’s okay, tell me what you do remember, anything at all.”
“Well, it was about an airport, I think.”
“Did the story take place on a Sunday, Monday, Tuesday, or Wednesday?”
“I don’t remember.”
“Just take a guess then.”
“Monday.”
“Was there a hurricane, a flood
, a wildfire, or an avalanche?”
“A wildfire.”
“Did the story take place in April, May, June, or July?”
“July.”
“Which airport was shut down: John Wayne, Dulles, or LAX?”
“LAX.”
“How many travelers were stranded: thirty, forty, fifty, or sixty?”
“I don’t know, sixty.”
“How many children were stranded: two, four, six, or eight?”
“Eight.”
“Who else became stranded: two firemen, two policemen, two businessmen, or two teachers?”
“Two firemen.”
“Great, you’re all done here. I’ll walk you over to Dr. Davis.”
Great? Was it possible that she remembered the story but didn’t know she knew it?
SHE WALKED INTO DR. DAVIS’S office surprised to see John already there, sitting in the seat that had remained conspicuously empty on her previous two visits. They were all there now. Alice, John, and Dr. Davis. She couldn’t believe that this was really happening, that this was her life, that she was a sick woman at her neurologist’s appointment with her husband. She almost felt like a character in a play, this woman with Alzheimer’s disease. The husband held his script in his lap. Only it wasn’t a script, it was the Activities of Daily Living questionnaire. (Interior of Doctor’s Office. The woman’s neurologist sits across from the woman’s husband. Enter the woman.)
“Alice, have a seat. I’ve just had a few minutes here with John.”
John spun his wedding band and jiggled his right leg. Their chairs touched, so he was causing hers to vibrate. What had they been talking about? She wanted to talk to John in private before they began, to find out what had happened and to get their stories straight. And she wanted to ask him to stop shaking her.
“How are you?” asked Dr. Davis.
“I’m good.”