"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."
He smiled at her. It was a kind smile, and it dulled the edges of her apprehension.
"Okay, how about your memory? Are there any additional concerns or changes since the last time you were here?"
"Well, I'd say I'm having a harder time keeping track of my schedule. I have to refer to my BlackBerry and to-do lists all day long. And I hate talking on the phone now. If I can't see the person I'm talking to, I have a really hard time understanding the entire conversation. I usually lose track of what the person is saying while I'm chasing down words in my head."
"How about disorientation, any more episodes of feeling lost or confused?"
"No. Well, sometimes I get confused as to what time of day it is, even looking at my watch, but I eventually figure it out. I did go to my office once thinking it was morning and didn't realize until I got back home that it was the middle of the night."
"You did?" asked John. "When was this?"
"I don't know, last month, I think."
"Where was I?"
"Asleep."
"Why am I just finding out about this now, Ali?"
"I don't know, I forgot to tell you?"
She smiled, but it didn't seem to change him. If anything, the edges of his apprehension got a little sharper.
"This type of confusion and night wandering is very common, and it's likely to happen again. You might want to consider attaching a jingle bell to the front door or something that would wake John up if it opened in the middle of the night. And you should probably register with the Alzheimer's Association's Safe Return program. I think it's something like forty dollars, and you wear an ID bracelet with a personal code on it."
"I have 'John' programmed into my cell phone, and I carry it with me in this bag at all times."
"Okay, that's good, but what if the battery goes dead or John's phone is off and you're lost?"
"How about a piece of paper in my bag that has my name, John's, our address and phone numbers?"
"That'll work, as long as you always have it on you. You might forget to bring your bag. The bracelet, you wouldn't have to think about."
"It's a good idea," said John. "She'll get one."
"How are you doing with the medications, are you taking all of your doses?"
"Yes."
"Any problems with side effects, nausea, dizziness?"
"No."
"Aside from your night at the office, are you having any trouble sleeping?"
"No."
"Are you still getting regular exercise?"
"Yes, I'm still running, about five miles, usually every day."
"John, do you run?"
"No, I walk to work and home, that's about it for me."
"I think it'd be a good idea for you to take up running with her. There's convincing data in animal models that suggest exercise alone can slow the accumulation of amyloid-beta and cognitive decline."
"I've seen those studies," said Alice.
"Right, so keep up with the running. But I'd like it if you could pair up with a running partner; that way we don't have to worry about you getting lost or skipping your run because you forgot about it."
"I'll start running with her."
John hated running. He played squash and tennis and an occasional game of golf, but he never ran. He could certainly outpace her mentally now, but physically, she was still miles ahead of him. She loved the idea of running with him but doubted that he could commit to it.
"How's your mood been, are you feeling okay?"
"Generally good. I'm definitely frustrated a lot and exhausted from trying to keep up with everything. And I'm anxious about what lies ahead for us. But otherwise, I feel the same, better actually, in some ways, since telling John and the kids."
"Have you told anyone at Harvard?"
"No, not yet."
"Were you able to teach your classes and meet all your professional responsibilities this semester?"
"Yes, it took a lot more out of me than it did last semester, but yes."
"Have you been traveling alone to meetings and lectures?"
"I've pretty much stopped. I canceled two university lectures, and I skipped a big conference in April, and I'm missing the one in France this month. I normally travel a lot in the summer, we both do, but this year we're spending the whole summer at our house in Chatham. We're heading down there next month."
"Good, that sounds wonderful. Okay, it sounds like you'll be well taken care of for the summer. I do think you should come up with a plan for the fall that involves telling the people at Harvard, maybe coming up with a way of transitioning out of your job that makes sense, and I think traveling alone should be out of the question at that point."
She nodded. She dreaded September.
"There are some legal things to plan now as well, advance directives like power of attorney and a living will. Have you thought about whether or not you'd like to donate your brain to research?"
She had thought about it. She imagined her brain, bloodless, formalin-perfused, and Silly Putty-colored, sitting in the cupped hands of a medical student. The instructor would point to various sulci and gyri, indicating the locations of the somatosensory cortex, the auditory cortex, and the visual cortex. The smell of the ocean, the sounds of her children's voices, John's hands and face. Or she imagined it cut into thin, coronal slices, like a deli ham, and adhered to glass slides. In such a preparation, the enlarged ventricles would be striking. The empty spaces where she once resided.
"Yes, I'd like to."
John cringed.
"Okay, I'll have you fill out the paperwork before you leave. John, can I have that questionnaire you're holding?"
What did he say about me in there? They would never talk about it.
"When did Alice tell you about her diagnosis?"
"Just after you told her."
"Okay, how would you say she's been doing since then?"
"Very well, I think. It's true about the phone. She won't answer it at all anymore. Either I get it or she lets the machine pick it up. She's become glued to her BlackBerry, almost like a compulsion. She sometimes checks it every couple of minutes in the morning before she leaves the house. That's a little difficult to watch."
More and more, it seemed he couldn't bear to look at her. When he did, it was with a clinical eye, like she was one of his lab rats.
"Anything else, anything that Alice may not have mentioned?"
"Nothing I can think of."
"How's her mood and personality, any changes you've noticed there?"
"No, she's the same. A little defensive, maybe. And quieter, she doesn't initiate conversation as much."
"And how are you doing?"
"Me? I'm fine."
"I have some information for you to take with you about our caregivers' support group. Denise Daddario is the social worker here. You should make an appointment with her and just let her know what's going on."
"This is an appointment for me?"
"Yes."
"Really, I don't need one, I'm fine."
"Okay, well, these resources are here if you find you come to need them. Now, I have some questions for Alice."
"Actually, I want to talk about some additional therapies and clinical trials."
"Okay, let's do that, but first, let's finish up her exam. Alice, what day of the week is it?"
"Monday."
"And when were you born?"
"October eleventh, 1953."
"Who is the vice president of the United States?"
"Dick Cheney."
"Okay, now I'm going to tell you a name and address, and you're going to repeat it back to me. Then, I'm going to ask you to repeat it again later. Ready? John Black, 42 West Street, Brighton."
"The same as last time."
"Yes, it is, very good. Can you repeat it back to me now?"
"John Black, 42 West Street, Brighton."
John Black, 42 West Street, Brighton.
John never wears black, Lydia lives out west, Tom lives in Brighton, eight years ago I was forty-two.
John Black, 42 West Street, Brighton.
"Okay, can you count to twenty forwards and then backwards?"
She did.
"Now, I want you to raise the number of fingers on your left hand which corresponds to the place in the alphabet of the first letter of the city you're in."
She repeated what he said in her head and then made the peace sign with her left index and middle fingers.
"Good. Now, what is this thing called on my watch?"
"A clasp."
"Okay, now write a sentence about today's weather on this piece of paper."
It is hazy, hot, and humid. "On the other side of that paper, draw a clock showing the time as forty-five minutes past three."
She drew a big circle and filled in the numbers starting at the top with twelve.
"Oops, I made the circle too big."
She scribbled it out.
3:45 "No, not digital. I'm looking for an analog clock," said Dr. Davis.
"Well, are you looking to see if I can draw or if I can still tell time? If you draw me a clock face, I can show you 3:45. I've never been any good at drawing."
When Anna was three, she'd loved horses and used to beg Alice to draw pictures of them for her. Alice's renditions had looked, at best, like postmodern dragon-dogs and always failed to satisfy even the wild and generously accepting imagination of her preschooler. No, Mom, not that, draw me a horse.
"I'm actually looking for both, Alice. Alzheimer's affects the parietal lobes pretty early on, and that's where we keep our internal representations of extrapersonal space. John, this is why I want you to go running with her."
John nodded. They were ganging up on her.
"John, you know I can't draw."
"Alice, it's a clock, not a horse."
Stunned that he didn't defend her, she glared at him and raised her eyebrows, giving him a second chance to verify her perfectly valid position. He just stared back at her and spun his ring.
"If you draw me a clock, I'll show you three forty-five."
Dr. Davis drew a clock face on a new sheet of paper, and Alice drew the hands pointing to the correct time.
"Okay, now I'd like you to tell me that name and address I asked you to remember earlier."
"John Black, something West Street, Brighton."
"Okay, was it forty-two, forty-four, forty-six, or forty-eight?"
"Forty-eight."
Dr. Davis wrote something lengthy on the piece of paper with the clock.
"John, please stop shaking my chair."
"Okay, now we can talk about clinical trial options. There are several ongoing studies here and at the Brigham. The one I like the most for you starts enrolling patients this month. It's a phase three study, and it's a drug called Amylix. It appears to bind soluble amyloid-beta and prevent its aggregation, so unlike the drugs you're on now, there's the hope that this could prevent the disease from progressing further. The phase two study was very encouraging. It was well tolerated, and after a year on the medication, the patients' cognitive functioning seemed to have stopped declining or even improved."
"I assume it's placebo-controlled?" asked John.
"Yes, it's double-blind and randomized to placebo or one of two doses."
So I might get only sugar pills. She suspected that amyloid-beta didn't give a shit about placebo effects or the power of wishful thinking.
"What do you think of the secretase inhibitors?" asked John.
John liked these best. Secretases were the naturally occurring enzymes that released normal, unharmful levels of amyloid-beta. The mutation in Alice's presenilin-1 secretase rendered it insensitive to proper regulation, and it produced too much amyloid-beta. Too much was harmful. Like turning on a faucet that couldn't be turned off, her sink was rapidly overflowing.
"Right now, the secretase inhibitors are either too toxic for clinical use or--"
"What about Flurizan?"
Flurizan was an anti-inflammatory drug like Advil. Myriad Pharmaceuticals claimed it decreased the production of amyloid-beta 42. Less water into the sink.
"Yes, there's a lot of attention on that one. There's an ongoing phase two study, but only in Canada and the UK."
"How do you feel about Alice taking flurbiprofen?"
"We don't have the data yet to say whether or not it's effective for treating Alzheimer's. If she decides not to enroll in a clinical trial, I would say that it probably couldn't hurt. But if she wants to be in a study, flurbiprofen would be considered an investigational treatment for Alzheimer's, and taking it would exclude her from the study."
"All right, what about Elan's monoclonal antibody?" asked John.
"I like it, but it's only in phase one and enrollment is currently closed. Assuming it passes safety, they won't likely initiate phase two until spring of next year at the earliest, and I'd like to get Alice in a trial sooner if we can."
"Have you ever put anyone on IVIg therapy?" asked John.
John also liked the idea of this one. Derived from donated blood plasma, intravenous immunoglobulin was already approved safe and effective for treating primary immune deficiencies and a number of autoimmune neuromuscular disorders. It would be expensive and not reimbursable by their insurance company because of its off-label use but worth any price if it worked.
"I've never had a patient go on it. I'm not against it, but we don't know the proper dosing, and it's a very untargeted and crude method. I wouldn't expect its effects to be anything more than modest."
"We'll take modest," said John.
"Okay, but you need to understand what you'd be trading off. If you decide to go ahead with IVIg therapy, Alice wouldn't be eligible for any of these clinical trials with treatments that are potentially more specific and disease modifying."
"But she'd be guaranteed not to be in a placebo group."
"That's true. There are risks with either decision."
"Would I have to go off the Aricept and Namenda to participate in the clinical trial?"
"No, you'd keep taking them."
"Could I go on estrogen replacement therapy?"
"Yes. There's enough anecdotal evidence to suggest that it's at least to some degree protective, so I'd be willing to write you a prescription for CombiPatch. But again, it would be considered an investigational drug, and you wouldn't be able to participate in the Amylix trial."
"How long would I be in the trial for?"
"It's a fifteen-month study."
"What's your wife's name?" asked Alice.
"Lucy."
"What would you want Lucy to do if she had this?"
"I'd want her to enroll in the Amylix trial."
"So Amylix is the only option you can recommend?" asked John.
"Yes."
"I think we should do the IVIg along with flurbiprofen and the CombiPatch," said John.
The room became still and quiet. An enormous amount of information had just been passed back and forth. Alice pressed her fingers on her eyes and tried to think analytically about her treatment options. She did her best to set up columns and rows in her head to compare the drugs, but the imaginary chart didn't help, and she tossed it into the imaginary trash. She thought conceptually instead and arrived at a single, crisp image that made sense. A shotgun or a single bullet.
"You don't need to make a decision on this today. You can go home and think about it some more and get back to me."
No, she didn't need to think about it any further. She was a scientist. She knew how to risk everything with no guarantees in search of the unknown truth. As she'd done so many times over the years with her own research, she chose the bullet.
"I want to do the trial."
"Ali, I think you should trust me here," said John.
"I can still draw my own conclusions, John. I want to do the trial."
"Okay, I'll get you the forms to sign."
(Interior of Doctor's Office. The neurologist left the room. The husband spun his ring. The woman hoped for a cure.)
JULY 2004
John? John? Are you home?"
She was sure that he wasn't, but being sure of anything these days was tattered with too many holes to contain the meaning that it used to. He had left to go somewhere, but she couldn't remember when he left or where he was going. Did he run to the store for milk or coffee? Did he go out to rent a movie? If either were the case, he'd be back any minute. Or did he drive back up to Cambridge, in which case he'd be gone for at least several hours and possibly the night? Or did he decide, at last, that he couldn't face what lay ahead for them, and he just plain left, never to return? No, he wouldn't do that. She was sure of it.
Their Chatham Cape, built in 1990, felt bigger, more open, and less compartmentalized than their house in Cambridge. She walked into the kitchen. It was nothing like their kitchen at home. The bleached effect of the white painted walls and cabinets, white appliances, white barstools, and white tile floor was broken up only slightly by the soapstone countertops and splashes of cobalt blue in various white ceramic and clear glass containers. It looked like a coloring book page that had been only tentatively filled in with a single blue crayon.
The two plates and used paper napkins on the island counter displayed evidence of salad and a spaghetti and red sauce dinner. One of the glasses still held a gulp of white wine. With the detached curiosity of a forensic scientist, she picked up the glass and tested the temperature of the wine against her lips. It was still a little cold. She felt full. She looked at the time. It was just after nine o'clock.
They'd been in Chatham for a week now. In years past, after a week away from the day-to-day concerns at Harvard, she would have been fully committed to the relaxed lifestyle that the Cape insisted on and already deep into her third or fourth book. But this year, Harvard's day-to-day schedule itself, albeit packed and demanding, had provided a structure for her that was familiar and comforting. Meetings, symposia, class times, and appointments lay like bread crumbs that guided her through each day.
Here in Chatham, she had no schedule. She slept late, ate meals at varying times, and played everything by ear. She bookended each day with her medications, she took her butterfly test each morning, and she ran every day with John. But these didn't provide enough structure. She needed bigger bread crumbs and more of them.
She often didn't know the time of day or what day it was, for that matter. On more than one occasion now when she sat down to eat, she didn't know which meal she was about to be presented with. When yesterday a waitress at the Sand Bar put a plate of fried clams in front of her, she would have just as readily and enthusiastically dug into a plate of pancakes.
The kitchen windows were open. She looked out into the driveway. No car. The outside air still held traces of the hot day and carried sounds of bullfrogs, a woman laughing, and the tide at Hardings Beach. She left a note for John next to the uncleared dishes:
Walk to beach. Love, A
She inhaled the clean night air. The midnight blue sky was punctured with backlit stars and a cartoon crescent moon. Not as dark as it would get that night, it was already darker than it ever got in Cambridge. Without streetlamps and tucked far enough in from Main Street, only lights from porches, rooms in houses, the occasional car high beams, and the moon illuminated their beach neighborhood. In Cambridge, that amount of darkness would have made her feel uneasy walking alone, but here, in this small seaside and vacationing community, she felt perfectly safe.
There were no cars parked in the lot and no one else on the beach. The town police discouraged activity there at night. At this hour, there were no screaming children or seagulls, no impossible-to-ignore cell phone conversations, no aggressive worries about needing to leave in time to get to the next thing, nothing to disrupt the peace.
She walked to the water's edge and let the ocean consume her feet. Warm waves licked her legs. Facing Nantucket Sound, Hardings Beach's protected waters were a good ten degrees milder than those of the nearby beaches that faced the cold Atlantic directly.
She removed her shirt and bra first, then slid off her skirt and underwear in one motion, and walked in. The water, free from the seaweed that normally tumbled in with the surf, lapped milky smooth against her skin. She began to breathe to the rhythm of the tide. As she treaded lightly, floating on her back, she marveled at the beads of phosphorescence that trailed her fingertips and heels like pixie dust.
Moonlight reflected off her right wrist. SAFE RETURN was engraved on the front of the flat, two-inch, stainless steel bracelet. A one-eight-hundred number, her identification, and the words Memory Impaired were etched on the reverse side. Her thoughts then rode a series of waves, traveling from unwanted jewelry to her mother's butterfly necklace, traversing from there to her plan for suicide, to the books she planned to read, and finally stranded themselves on the common fates of Virginia Woolf and Edna Pontellier. It would be so easy. She could swim straight out toward Nantucket until she was too tired to continue.
She looked out over the dark water. Her body, strong and healthy, held her buoyant, treading water, every instinct battling toward life. Yes, she didn't remember eating dinner with John tonight or where he'd said he was going. And she might very well not remember this night in the morning, but in this moment, she didn't feel desperate. She felt alive and happy.
She looked back toward the beach, the landscape dimly lit. A figure approached. She knew it was John before she could identify any of his features by the bounce and size of his walk. She didn't ask him where he'd been or how long he'd been gone. She didn't thank him for coming back. He didn't scold her for being out alone without her cell phone, and he didn't ask her to get out and come home. Without a word between them, he undressed and joined her in her ocean.
"JOHN?"
She found him painting the trim on the detached garage.
"I've been calling for you all over the house," said Alice.
"I was out here, I didn't hear you," said John.
"When do you leave for the conference?" she asked.
"Monday."
He was going to Philadelphia for a week to attend the ninth International Conference on Alzheimer's Disease.
"That's after Lydia gets here, right?"
"Yes, she'll be here on Sunday."
"Oh, right."
Following Lydia's written request, the Monomoy Theatre repertory company had invited her to join them as a guest artist for the summer.
"Are you ready to run?" asked John.
The early morning fog hadn't yet lifted, and the air felt cooler than she'd dressed for.
"I just need to grab another layer."
Inside the front door, she opened the coat closet. Dressing comfortably on the Cape in early summer posed a constant challenge, with temperatures on any given day beginning in the fifties, soaring up to eighty by afternoon and boomeranging back down into the fifties, often paired with a brisk ocean wind, by nightfall. It required a creative sense of fashion and a willingness to add and subtract articles of clothing many times a day. She touched the sleeves of each of the hanging coats. Although a number of them would be perfect now for sitting or walking on the beach, everything in there felt too heavy for running.
She ran up the stairs and into their bedroom. After searching through several drawers, she found a lightweight fleece and put it on. She noticed the book she'd been reading on her nightstand. She grabbed it and walked down the stairs and into the kitchen. She poured herself a glass of iced tea and walked out to the back porch. The early morning fog hadn't yet lifted, and it was cooler than she'd anticipated. She set her drink and book down on the table between the white Adirondack chairs and went back into the house to retrieve a blanket.
She returned, wrapped herself in the blanket, sat in one of the chairs, and opened her book to the dog-eared page. Reading was fast becoming a heartbreaking chore. She had to reread pages over and over to retain the continuity of the thesis or narrative, and if she put the book down for any length of time, she had to go back sometimes a full chapter to find the thread again. Plus, she felt anxious over deciding what to read. What if she didn't have time to read everything she'd always wanted to? Prioritizing hurt, a reminder that the clock was ticking, that some things would be left undone.
She'd just begun reading King Lear. She so loved Shakespeare's tragedies but had never read this one. Unfortunately, as was becoming routine, she found herself stuck after only a few minutes. She reread the previous page, tracing the imaginary line below the words with her index finger. She drank the entire glass of iced tea and watched the birds in the trees.
"There you are. What are you doing, aren't we going for a run?" John asked.
"Oh, yes, good. This book is making me crazy."
"Let's go then."
"Are you going to that conference today?"
"Monday."
"What's today?"
"Thursday."
"Oh. And when does Lydia get here?"
"Sunday."
"That's before you leave?"
"Yes. Ali, I just told you all this. You should put it in your BlackBerry, I think it'd make you feel better."
"Okay, sorry."
"Ready?"
"Yes. Wait, let me pee before we go."
"All right, I'll be out by the garage."
She placed her empty glass on the counter next to the sink and dropped the blanket and book on the slipcovered chair-and-a-half in the living room. She stood ready to move, but her legs needed further instruction. What did she come in here for? She retraced her steps--blanket and book, glass on counter, porch with John. He was leaving soon to attend the International Conference on Alzheimer's Disease. Sunday maybe? She'd have to ask him to be sure. They were about to go for a run. It was a little cool out. She came in for a fleece! No, that wasn't it. She was already wearing one. To hell with it.
Just as she reached the front door, an urgent pressure in her bladder announced itself, and she remembered that she really had to pee. She hastened back down the hall and opened the door to the bathroom. Only, to her utter disbelief, it wasn't the bathroom. A broom, mop, bucket, vacuum cleaner, stool, toolbox, lightbulbs, flashlights, bleach. The utility closet.
She looked farther down the hall. The kitchen to the left, the living room to the right, and that was it. There was a half bath on this floor, wasn't there? There had to be. It was right here. But it wasn't. She hurried to the kitchen but found only one door, and it led to the back porch. She raced over to the living room, but of course, there wasn't a bathroom off the living room. She rushed back to the hallway and held the doorknob.
"Please God, please God, please God."
She swung the door open like an illusionist revealing her most mystifying trick, but the bathroom didn't magically reappear.
How can I be lost in my own home?
She thought about bolting upstairs to the full bath, but she was strangely stuck and dumbfounded in the Twilight Zone-like, bathroomless dimension of the first floor. She was unable to hold it in any longer. She had an ethereal sense of observing herself, this poor, unfamiliar woman crying in the hallway. It didn't sound like the somewhat guarded cry of an adult woman. It was the scared, defeated, and unrestrained crying of a small child.
Her tears weren't all she wasn't able to contain any longer. John burst through the front door just in time to witness the urine streaming down her right leg, soaking her sweatpants, sock, and sneaker.
"Don't look at me!"
"Ali, don't cry, it's okay."
"I don't know where I am."
"It's okay, you're right here."
"I'm lost."
"You're not lost, Ali, you're with me."
He held her, and rocked her slightly side to side, soothing her as she'd seen him calm their children after innumerable physical injuries and social injustices.
"I couldn't find the bathroom."
"It's okay."
"I'm sorry."
"Don't be sorry, it's okay. Come on, let's get you changed. The day's already heating up, you need something lighter anyway."
BEFORE JOHN LEFT FOR THE conference, he gave Lydia detailed instructions concerning Alice's medications, her running routine, her cell phone, and the Safe Return program. He also gave her the neurologist's phone number, just in case. When Alice replayed his little speech in her head, it sounded very much like the ones they had delivered to their teenage babysitters before leaving the kids for weekends away in Maine or Vermont. Now she needed to be watched. By her own daughter.
After their first dinner alone together at the Squire, Alice and Lydia walked down Main Street without talking. The line of luxury cars and SUVs parked along the curb, outfitted with bike racks and kayaks bungeed on roofs, crammed with baby strollers, beach chairs, and umbrellas, and sporting license plates from Connecticut, New York, and New Jersey in addition to Massachusetts signaled the summer season officially in full swing. Families ambled along the sidewalk without regard for lanes of pedestrian traffic, unhurried and without specific destinations, stopping, backtracking, and window-shopping. Like they had all the time in the world.
An easy ten-minute stroll removed them from the congested downtown. They stopped in front of the Chatham Lighthouse and breathed in the panoramic view of the beach below before walking the thirty steps down to the sand. A modest line of sandals and flip-flops waited at the bottom, where they'd been kicked off earlier in the day. Alice and Lydia added their shoes to the end of the row and continued walking. The sign in front of them read:
WARNING: STRONG CURRENT. Surf subject to unexpected life-threatening waves and currents. No lifeguard. Hazardous area for: swimming and wading, diving and waterskiing, sailboards and small boats, rafts and canoes. Alice watched and listened to the relentless, breaking waves pounding the shore. If it weren't for the colossal seawall constructed at the edges of the properties of the million-dollar homes along Shore Road, the ocean would have taken each house in, devouring them all without sympathy or apology. She imagined her Alzheimer's like this ocean at Lighthouse Beach--unstoppable, ferocious, destructive. Only there were no seawalls in her brain to protect her memories and thoughts from the onslaught.
"I'm sorry I didn't get to go to your play," she said to Lydia.
"It's all right. I know it was because of Dad this time."
"I can't wait to see the one you're in this summer."
"Uh-huh."
The sun hung low and impossibly big in the pink and blue sky, ready to plunge into the Altantic. They walked by a man kneeling in the sand, aiming his camera at the horizon, trying to capture its fleeting beauty before it disappeared with the sun.
"This conference Dad's at is about Alzheimer's?"
"Yes."
"Is he trying to find a better treatment there?"
"He is."
"Do you think he'll find one?"
Alice watched the tide coming in, erasing footprints, demolishing an elaborate sand castle decorated with shells, filling in a hole dug earlier that day with plastic shovels, ridding the shore of its daily history. She envied the beautiful homes behind the seawall.
"No."
Alice picked up a shell. She rubbed the sand off, revealing its milky white shine and elegant ribbons of pink. She liked its smooth feel, but it was broken on one edge. She thought about tossing it into the water but decided to keep it.
"Well, I'm sure he wouldn't take the time to go if he didn't think he could find something," said Lydia.
Two girls wearing University of Massachusetts sweatshirts walked toward them, giggling. Alice smiled at them and said "Hello" as they passed.
"I wish you'd go to college," said Alice.
"Mom, please don't."
Not wanting to start their week together with a full-blown fight, Alice silently reminisced while they walked. The professors she'd loved and feared and made a fool of herself in front of, the boys she'd loved and feared and made an even bigger fool of herself in front of, the punchy all-nighters before exams, the classes, the parties, the friendships, meeting John--her memories of that time in her life were vivid, perfectly intact, and easily accessed. They were almost a little cocky the way they came to her, so full and ready, like they had no knowledge of the war going on just a few centimeters to their left.
Whenever she thought about college, her thoughts ultimately bumped into January of her freshman year. A little over three hours after her family had visited and left for home, Alice had heard a tentative knock on her dorm room door. She still remembered every detail of the dean standing in her doorway--the single, deep crease between his eyebrows, the boyish part in his grandfatherly gray hair, the woolly pills budding all over his forest green sweater, the low, careful cadence of his voice.
Her father had driven the car off Route 93 and into a tree. He might have fallen asleep. He might have had too much to drink at dinner. He always had too much to drink at dinner. He was in a hospital in Manchester. Her mother and her sister were dead.
"JOHN? IS THAT YOU?"
"No, it's just me bringing in the towels. It's about to pour," said Lydia.
The air was charged and heavy. They were due for some rain. The weather had cooperated all week with postcard sunny days and perfect sleeping temperatures each night. Her brain had cooperated all week, too. She'd come to recognize the difference between days that would be fraught with difficulties finding memories and words and bathrooms and days that her Alzheimer's would lie silent and not interfere. On those quiescent days, she was her normal self, the self she understood and had confidence in. On those days, she could almost convince herself that Dr. Davis and the genetic counselor had been wrong, or that the last six months had been a horrible dream, only a nightmare, the monster under her bed and clawing at her covers not real.
From the living room, Alice watched Lydia fold towels and stack them on one of the kitchen stools. She wore a light blue, spaghetti-strap tank top and a black skirt. She looked freshly showered. Alice still wore her bathing suit under a faded fish-print beach dress.
"Should I get changed?" she asked.
"If you want to."
Lydia returned clean mugs to a cabinet and checked her watch. Then she came into the living room, gathered the magazines and catalogs from the couch and floor, and piled them into a neat stack on the coffee table. She checked her watch. She took a copy of Cape Cod Magazine off the top of the pile, sat down on the couch, and began flipping through it. They seemed to be killing time, but Alice didn't understand why. Something wasn't right.
"Where's John?" asked Alice.
Lydia looked up from the magazine, either amused or embarrassed or maybe both. Alice couldn't tell.
"He should be home any minute."
"So we're waiting for him."
"Uh-huh."
"Where's Anne?"
"Anna's in Boston, with Charlie."
"No, Anne, my sister, where's Anne?"
Lydia stared at her without blinking, all lightness drained from her face.
"Mom, Anne's dead. She died in a car accident with your mother."
Lydia's eyes didn't move from Alice's. Alice stopped breathing, and her heart squeezed like a fist. Her head and fingers went numb, and the world around her became dark and narrow. She took in a huge breath of air. It filled her head and fingers with oxygen, and it filled her pounding heart with rage and grief. She began to shake and cry.
"No, Mom, this happened a long time ago, remember?"
Lydia was talking to her, but Alice couldn't hear what she was saying. She could only feel the rage and grief coursing through her every cell, her sick heart, and her hot tears, and she could only hear her own voice in her head screaming for Anne and her mother.
John stood over them, drenched.
"What happened?"
"She was asking for Anne. She thinks they just died."
He held her head in his hands. He was talking to her, trying to calm her down. Why isn't he upset, too? He's known about this for a while, that's why, and he's been keeping it from me. She couldn't trust him.
AUGUST 2004
Her mother and sister had died when she was a freshman in college. No pictures of her mother or Anne filled a single page in their family photo albums. There was no evidence of them at her graduations, her wedding, or with her, John, and the children on holidays, vacations, or birthdays. She couldn't picture her mother as an old woman, and she certainly would be now, and Anne hadn't aged beyond a teenager in her mind. Still, she'd been so sure that they were about to walk through the front door, not as ghosts from the past but alive and well, and that they were coming to stay at the house in Chatham with them for the summer. She was somewhat scared that she could become that confused, that, awake and sober, she could wholeheartedly expect a visit from her long-dead mother and sister. It was even scarier that this scared her only somewhat.
Alice, John, and Lydia sat at the patio table on the porch eating breakfast. Lydia was talking to them about the members of her summer ensemble and her rehearsals. But mostly, she was talking to John.
"I was so intimidated before I got here, you know? I mean, you should see all their bios. MFAs in theater from NYU and the Actors Studio and degrees from Yale, experience on Broadway."
"Wow, sounds like a very experienced group. What's the age range?" he asked.
"Oh, I'm easily the youngest. Most are probably in their thirties and forties, but there's a man and woman as old as you and Mom."
"That old, huh?"
"You know what I mean. Anyway, I didn't know if I'd be totally out of my league, but the training I've been piecing together and the work I've been getting has really given me the right tools. I totally know what I'm doing."
Alice remembered having the same insecurity and realization in her first months as a professor at Harvard.
"They all definitely have more experience than me, but none of them have studied Meisner. They all studied Stanislavsky, or the Method, but I really think Meisner is the most powerful approach for true spontaneity in acting. So even though I don't have as much onstage experience, I bring something unique to the group."
"That's great, honey. That's probably one of the reasons they cast you. What's 'spontaneity in acting' mean exactly?" John asked.
Alice had wondered the same thing, but her words, viscous in amyloid goo, lagged behind John's, as they so often seemed to now in real-time conversation. So she listened to her husband and daughter ramble effortlessly ahead of her and watched them as participants onstage from her seat in the audience.
She cut her sesame bagel in half and took a bite. She didn't like it plain. Several condiment options sat on the table--wild Maine blueberry jam, a jar of peanut butter, a stick of butter on a plate, and a tub of white butter. But it wasn't called white butter. What was it called? Not mayonnaise. No, it was too thick, like butter. What was its name? She pointed her butter knife at it.
"John, can you pass that to me?"
John handed her the tub of white butter. She spread a thick layer onto one of the bagel halves and stared at it. She knew exactly how it would taste, and that she liked it, but she couldn't bring herself to bite into it until she could tell herself its name. Lydia watched her mother studying her bagel.
"Cream cheese, Mom."
"Right. Cream cheese. Thank you, Lydia."
The phone rang, and John went inside the house to answer it. The first thought that jumped to the front of Alice's mind was that it was her mother, calling to let them know she was going to be late getting there. The thought, seemingly realistic and colored with immediacy, appeared as reasonable as expecting John to return to the patio table within the next few minutes. Alice corrected the impetuous thought, scolded it, and put it away. Her mother and sister had died when she was a freshman in college. It was maddening to have to keep reminding herself of this.
Alone with her daughter, at least for the moment, she took the opportunity to get a word in.
"Lydia, what about going to school for a degree in theater?"
"Mom, didn't you understand a word of what I was just saying? I don't need a degree."
"I heard every word of what you said, and I understood it all. I was thinking more big picture. I'm sure there are aspects of your craft that you haven't yet explored, things you could still learn, maybe even directing? The point is, a degree opens more doors should you ever need them."
"And what doors are those?"
"Well, for one, the degree would give you the credibility to teach if you ever wanted to."
"Mom, I want to be an actor, not a teacher. That's you, not me."
"I know that, Lydia, you've made that abundantly clear. I'm not necessarily thinking of a teacher at a university or college anyway, although you could. I was thinking that you could someday run workshops just like the ones you've been taking and love so much."
"Mom, I'm sorry, but I'm not going to spend any energy on thinking about what I might do if I'm not good enough to make it as an actor. I don't need to doubt myself like that."
"I'm not doubting that you can have a career as an actor. But what if you decide to have a family someday, and you'd like to slow down a bit but still stay in the business? Teaching workshops, even from your home, might be a nice flexibility to have. Plus, it's not always what you know, but who you know. The networking possibilities you'd have with classmates, professors, alumnae, I'm sure there's an inner circle you simply don't have access to without a degree or a body of work already proven in the business."
Alice paused, waiting for Lydia's "yeah, but," but she didn't say anything.
"Just consider it. Life only gets busier. It's a harder thing to fit in as you get older. Maybe talk to some of the people in your ensemble and get their perspectives on what's involved in continuing an acting career into your thirties and forties and older. Okay?"
"Okay."
Okay. That was the closest they'd ever come to agreement on the subject. Alice tried to think of something else to talk about but couldn't. For so long now, they had talked only about this. The silence between them grew.
"Mom, what does it feel like?"
"What does what feel like?"
"Having Alzheimer's. Can you feel that you have it right now?"
"Well, I know I'm not confused or repeating myself right now, but just a few minutes ago, I couldn't find 'cream cheese,' and I was having a hard time participating in the conversation with you and your dad. I know it's only a matter of time before those types of things happen again, and the times between when it happens are getting shorter. And the things that are happening are getting bigger. So even when I feel completely normal, I know I'm not. It's not over, it's just a rest. I don't trust myself."
As soon as she finished, she worried she'd admitted too much. She didn't want to scare her daughter. But Lydia didn't flinch and stayed interested, and Alice relaxed.
"So you know when it's happening?"
"Most of the time."
"Like what was happening when you couldn't think of the name for cream cheese?"
"I know what I'm looking for, my brain just can't get to it. It's like if you decided you wanted that glass of water, only your hand won't pick it up. You ask it nicely, you threaten it, but it just won't budge. You might finally get it to move, but then you grab the saltshaker instead, or you knock the glass and spill the water all over the table. Or by the time you get your hand to hold the glass and bring it to your lips, the itch in your throat has cleared, and you don't need a drink anymore. The moment of need has passed."
"That sounds like torture, Mom."
"It is."
"I'm so sorry you have this."
"Thanks."
Lydia reached out across the dishes and glasses and years of distance and held her mother's hand. Alice squeezed it and smiled. Finally, they'd found something else they could talk about.
ALICE WOKE UP ON THE couch. She'd been napping a lot lately, sometimes twice a day. While her attention and energy benefited greatly from the extra rest, reentry into the day was jarring. She looked at the clock on the wall. Four fifteen. She couldn't remember what time she'd dozed off. She remembered eating lunch. A sandwich, some kind of sandwich, with John. That was probably around noon. The corner of something hard pressed into her hip. The book she'd been reading. She must've fallen asleep while reading.
Four twenty. Lydia's rehearsal ran until seven. She sat up and listened. She could hear the seagulls squawking at Hardings and imagined their scavenger hunt, a mad race to find and devour every last crumb left behind by those careless, sunburned humans. She stood up and set out on her own hunt, less frenzied than the gulls', for John. She checked their bedroom and study. She looked out into the driveway. No car. Just about to curse him for not leaving a note, she found it under a magnet on the refrigerator door.
Ali--Went for a drive, be back soon, John
She sat back down on the couch and picked up her book, Sense and Sensibility by Jane Austen, but didn't open it. She didn't really want to be reading it now. She'd been about halfway through Moby-Dick and lost it. She and John had turned the house upside down without success. They'd even looked in every peculiar spot that only a demented person would place a book--the refrigerator and freezer, the pantry, their dresser drawers, the linen closet, the fireplace. But neither of them could find it. She'd probably left it at the beach. She hoped she'd left it at the beach. That was at least something she would've done before Alzheimer's.
John had offered to pick her up another copy. Maybe he'd gone to the bookstore. She hoped he had. If she waited much longer, she'd forget what she'd already read and have to start over. All that work. Just the thought of it made her tired again. In the meantime, she'd started Jane Austen, whom she'd always liked. But this one wasn't holding her attention.
She wandered upstairs to Lydia's bedroom. Of her three children, she knew Lydia the least. On the top of her dresser, turquoise and silver rings, a leather necklace, and a colorfully beaded one spilled over an open cardboard box. Next to the box sat a pile of hair clips and a tray for burning incense. Lydia was a bit of a hippie.
Her clothes lay all over the floor, some folded, most not. There couldn't have been much of anything actually in her dresser drawers. She'd left her bed unmade. Lydia was a bit of a slob.
Books of poetry and plays lined the shelves of her bookcase--'Night Mother, Dinner with Friends, Proof, A Delicate Balance, Spoon River Anthology, Agnes of God, Angels in America, Oleanna. Lydia was an actress.
She picked up several of the plays and flipped through them. They were each only about eighty to ninety pages, and each of those pages was only sparsely filled with text. Maybe it'd be easier and more satisfying to read plays. And I could talk about them with Lydia. She held on to Proof.
Lydia's journal, iPod, Sanford Meisner on Acting, and a framed picture sat on her nightstand. Alice picked up the journal. She hesitated, but barely. She didn't have the luxury of time. Sitting on the bed, she read page after page of her daughter's dreams and confessions. She read about blocks and breakthroughs in acting classes, fears and hopes surrounding auditions, disappointments and joys over castings. She read about a young woman's passion and tenacity.
She read about Malcolm. While they were acting in a dramatic scene together in class, Lydia had fallen in love with him. She'd thought she might be pregnant once, but wasn't. She was relieved, not ready yet to get married or have children. She wanted to find her own way in the world first.
Alice studied the framed photograph of Lydia and a man, presumably Malcolm. Their smiling faces touched. They were happy, the man and woman in the picture. Lydia was a woman.
"Ali, are you here?" called John.
"I'm upstairs!"
She returned the journal and picture to the nightstand and stole downstairs.
"Where'd you go?" Alice asked.
"I went for a drive."
He held two white plastic bags, one in each hand.
"Did you buy me a new copy of Moby-Dick?"
"Sort of."
He handed Alice one of the bags. It was filled with DVDs--Moby Dick with Gregory Peck and Orson Welles, King Lear with Laurence Olivier, Casablanca, One Flew over the Cuckoo's Nest, and The Sound of Music, her all-time favorite.
"I was thinking these might be a lot easier for you. And we can do this together."
She smiled.
"What's in the other bag?"
She felt giddy, like a little kid on Christmas morning. He pulled out a package of microwave popcorn and a box of Milk Duds.
"Can we watch The Sound of Music first?" she asked.
"Sure."
"I love you, John."
She threw her arms around him.
"I love you, too, Ali."
With her hands high on his back, she pressed her face against his chest and breathed him in. She wanted to say more to him, about what he meant to her, but she couldn't find the words. He held her a little tighter. He knew. They stood still in the kitchen holding on to each other without uttering a word for a long time.
"Here, you nuke the popcorn, and I'll put the movie in and meet you on the couch," said John.
"Okay."
She walked over to the microwave, opened the door, and laughed. She had to laugh.
"I found Moby-Dick!"
ALICE HAD BEEN UP ALONE for a couple of hours. In that early morning solitude, she drank green tea, read a little, and practiced yoga outside on the lawn. Posed in downward dog, she filled her lungs with the delicious morning ocean air and luxuriated in the strange, almost painful pleasure of the stretch in her hamstrings and glutes. Out of the corner of her eye, she observed her left triceps engaged in holding her body in this position. Solid, sculpted, beautiful. Her whole body looked strong and beautiful.
She was in the best physical shape of her life. Good food plus daily exercise equaled the strength in her flexed triceps muscles, the flexibility in her hips, her strong calves, and easy breathing during a four-mile run. Then, of course, there was her mind. Unresponsive, disobedient, weakening.
She took Aricept, Namenda, the mystery Amylix trial pill, Lipitor, vitamins C and E, and baby aspirin. She consumed additional antioxidants in the form of blueberries, red wine, and dark chocolate. She drank green tea. She tried ginkgo biloba. She meditated and played Numero. She brushed her teeth with her left, nondominant hand. She slept when she was tired. Yet none of these efforts seemed to add up to visible, measurable results. Maybe her cognitive capabilities would noticeably worsen if she subtracted the exercise, the Aricept, or the blueberries. Maybe unopposed, her dementia would run amok. Maybe. But maybe all these things didn't affect anything. She couldn't know, unless she went off her meds, eliminated chocolate and wine, and sat on her ass for the next month. This was not an experiment she was willing to conduct.
She stepped into warrior pose. She exhaled and sank deeper into the lunge, accepting the discomfort and additional challenge to her concentration and stamina, determined to maintain the pose. Determined to remain a warrior.
John emerged from the kitchen, bed-headed and zombie-like but dressed to run.
"You want coffee first?" asked Alice.
"No, let's just go, I'll have it when we get back."
They ran two miles every morning along Main Street to the center of town and returned via the same route. John's body had grown noticeably leaner and defined, and he could run that distance easily now, but he didn't enjoy one second of it. He ran with her, resigned and uncomplaining, but with the same enthusiasm and zest he had for paying the bills or doing the laundry. And she loved him for it.
She ran behind him, letting him set the pace, watching and listening to him like he was a gorgeous musical instrument--the pendulum-like swinging back of his elbows, the rhythmic, airy puffs of his exhales, the percussion of his sneakers on the sandy pavement. Then he spit, and she laughed. He didn't ask why.
They were on their way back when she ran up beside him. On a compassionate whim, she was about to tell him that he didn't have to run with her anymore if he didn't want to, that she could handle this route alone. But then, following his turn, they ran right at a fork onto Mill Road toward home where she would've gone left. Alzheimer's did not like to be ignored.
Back home, she thanked him, kissed him on his sweaty cheek, and then went straight and unshowered to Lydia, who was still in her pajamas and drinking coffee on the porch. Each morning, she and Lydia discussed whatever play Alice was reading over multigrain cereal with blueberries or a sesame bagel with cream cheese and coffee and tea. Alice's instinct had been right. She enjoyed reading plays infinitely more than reading novels or biographies, and talking over what she'd just read with Lydia, whether it was scene one, act one, or the entire play, proved a delightful and powerful way of reinforcing her memory of it. In analyzing scenes, character, and plot with Lydia, Alice saw the depth of her daughter's intellect, her rich understanding of human need and emotion and struggle. She saw Lydia. And she loved her.
Today, they discussed a scene from Angels in America. They passed eager questions and answers back and forth, their conversation two-way, equal, fun. And because Alice didn't have to compete with John to complete her thoughts, she could take her time and not get left behind.
"What was it like doing this scene with Malcolm?" Alice asked.
Lydia stared at her as if the question blew her mind.
"What?"
"Didn't you and Malcolm perform this scene together in your class?"
"You read my journal?"
Alice's stomach hollowed out. She thought Lydia had told her about Malcolm.
"Sweetie, I'm sorry--"
"I can't believe you did that! You have no right!"
Lydia shoved her chair back and stormed off, leaving Alice alone at the table, stunned and queasy. A few minutes later, Alice heard the front door slam.
"Don't worry, she'll calm down," said John.
All morning she tried to do something else. She tried to clean, to garden, to read, but all she could manage to do effectively was worry. She worried she'd done something unforgivable. She worried she'd just lost the respect, trust, and love of the daughter she'd only begun to know.
After lunch, Alice and John walked to Hardings Beach. Alice swam until her body felt too exhausted to feel anything else. The hollowed-out flip-flopping in her stomach gone, she returned to her beach chair, lay in the fully reclined position with her eyes closed and meditated.
She'd read that regular meditation could increase cortical thickness and slow age-related cortical thinning. Lydia was already meditating every day, and when Alice had expressed an interest, Lydia had taught her. Whether it helped to preserve her cortical thickness or not, Alice liked the time of quiet focus, how it so effectively hushed the cluttered noise and worry in her head. It literally gave her peace of mind.
After about twenty minutes, she returned to a more wakeful state, relaxed, energized, and hot. She waded back into the ocean, just for a quick dip this time, exchanging sweat and heat for salt and cool. Back in her chair, she overheard a woman on the blanket next to them talking about the wonderful play she'd just seen at the Monomoy Theatre. The hollowed-out flip-flopping surged back in.
That evening, John grilled cheeseburgers, and Alice made a salad. Lydia didn't come home for dinner.
"I'm sure rehearsal's just running a bit late," said John.
"She hates me now."
"She doesn't hate you."
After dinner, Alice drank two more glasses of red wine, and John drank three more glasses of scotch with ice. Still no Lydia. After Alice added her evening dose of pills to her unsettled stomach, they sat on the couch together with a bowl of popcorn and a box of Milk Duds and watched King Lear.
John woke her on the couch. The television was off, and the house was dark. She must've fallen asleep before the movie ended. She didn't remember the ending anyway. He guided her up the stairs to their bedroom.
She stood at her side of the bed, her hand over her disbelieving mouth, tears in her eyes, the worry expelled from her stomach and mind. Lydia's journal lay on her pillow.
"SORRY I'M LATE," SAID TOM, walking in.
"Okay, everyone, now that Tom's here, Charlie and I have some news to share," said Anna. "I'm five weeks pregnant with twins!"
Hugs and kisses and congratulations were followed by excited questions and answers and interruptions and more questions and answers. As her ability to track what was said in complex conversations with many participants declined, Alice's sensitivity to what wasn't said, to body language and unspoken feelings, had heightened. She'd explained this phenomenon a couple of weeks ago to Lydia, who'd told her it was an enviable skill to have as an actor. She'd said that she and other actors had to focus extremely hard to divorce themselves from verbal language in an effort to be honestly affected by what the other actors were doing and feeling. Alice didn't quite understand the distinction, but she loved Lydia for seeing her handicap as an enviable skill.
John looked happy and excited, but Alice saw that he exposed only some of the happiness and excitement he actually felt, probably trying to respect Anna's caveat of "it's still early." Even without Anna's cautioning, he was superstitious, as most biologists were, and wouldn't be inclined to openly count these two little chickens before they hatched. But he already couldn't wait. He wanted grandchildren.
Just beneath Charlie's happiness and excitement, Alice saw a thick layer of nervousness covering a thicker layer of terror. Alice thought they were both obviously visible, but Anna seemed oblivious, and no one else commented. Was she simply seeing the typical worry of an expectant first-time father? Was he nervous about the responsibility of feeding two mouths at once and paying for two college tuitions simultaneously? That would explain only the first layer. Was he also terrified about the prospect of having two kids in college and, at the same time, a wife with dementia?
Lydia and Tom stood next to each other, talking to Anna. Her children were beautiful, her children who weren't children anymore. Lydia looked radiant; she was enjoying the good news on top of the fact that her entire family was here to see her act.
Tom's smile was genuine, but Alice saw a subtle uneasiness about him, his eyes and cheeks slightly sunken, his body bonier. Was it school? A girlfriend? He saw her studying him.
"Mom, how are you feeling?" he asked.
"Mostly good."
"Really?"
"Yes, honestly. I'm feeling great."
"You seem too quiet."
"There's too many of us talking at once and too quickly," said Lydia.
Tom's smile disappeared, and he looked like he might cry. Alice's BlackBerry in her baby blue bag vibrated against her hip, signaling the time for her evening dose of pills. She'd wait a few minutes. She didn't want to take them just now, in front of Tom.
"Lyd, what time is your performance tomorrow?" asked Alice, her BlackBerry in hand.
"Eight o'clock."
"Mom, you don't have to schedule it. We're all here. It's not like we're going to forget to bring you with us," said Tom.
"What's the name of the play we're going to see?" asked Anna.
"Proof," said Lydia.
"Are you nervous?" asked Tom.
"A little, because it's opening night, and you're all going to be there. But I'll forget you exist once I'm onstage."
"Lydia, what time is your play?" asked Alice.
"Mom, you just asked that. Don't worry about it," said Tom.
"It's at eight o'clock, Mom," said Lydia. "Tom, you're not helping."
"No, you're not helping. Why should she have to worry about remembering something that she doesn't have to remember?"
"She won't worry about it if she puts it in her BlackBerry. Just let her do it," said Lydia.
"Well, she shouldn't be relying on that BlackBerry anyway. She should be exercising her memory whenever she can," said Anna.
"So which is it? Should she be memorizing my showtime or totally relying on us?" asked Lydia.
"You should be encouraging her to focus and really pay attention. She should try to recall the information on her own and not get lazy," said Anna.
"She's not lazy," said Lydia.
"You and that BlackBerry are enabling her. Look, Mom, what time is Lydia's show tomorrow?" asked Anna.
"I don't know. That's why I asked her," said Alice.
"She told you the answer twice, Mom. Can you try to remember what she said?"
"Anna, stop quizzing her," said Tom.
"I was going to enter it in my BlackBerry, but you interrupted me."
"I'm not asking you to look it up in your BlackBerry. I'm asking you to remember the time she said."
"Well, I didn't try to remember the time, because I was going to punch it in."
"Mom, just think for a second. What time is Lydia's show tomorrow?"
She didn't know the answer, but she knew that poor Anna needed to be put in her place.
"Lydia, what time is your show tomorrow?" asked Alice.
"Eight o'clock."
"It's at eight o'clock, Anna."
FIVE MINUTES BEFORE EIGHT O'CLOCK, they settled in their seats, second row center. The Monomoy Theatre was an intimate venue, with only a hundred seats and a stage floor just a few feet from the first row.
Alice couldn't wait for the lights to go down. She'd read this play and talked about it extensively with Lydia. She'd even helped her run lines. Lydia was playing Catherine, daughter of her mathematical genius-gone-mad father. Alice couldn't wait to see these characters come alive right in front of her.
From the very first scene, the acting was nuanced, honest, and multidimensional, and Alice became easily and completely absorbed in the imaginary world the actors created. Catherine claimed she'd written a groundbreaking proof, but neither her love interest nor her estranged sister believed her, and they both questioned her mental stability. She tortured herself with the fear that, like her genius father, she might be going crazy. Alice experienced her pain, betrayal, and fear right along with her. She was mesmerizing from beginning to end.
Afterward, the actors came out into the audience. Catherine beamed. John gave her flowers and a huge, emphatic hug.
"You were amazing, absolutely incredible!" said John.
"Thank you so much! Isn't it such a great play?"
The others hugged and kissed and praised her, too.
"You were brilliant, beautiful to watch," said Alice.
"Thank you."
"Will we get to see you in anything else this summer?" asked Alice.
She looked at Alice for an uncomfortably long time before she answered.
"No, this is my only role for the summer."
"Are you here for just the summer season?"
The question seemed to make her sad as she considered it. Her eyes welled with tears.
"Yes, I'm moving back to L.A. at the end of August, but I'll be back this way a lot to visit with my family."
"Mom, that's Lydia, your daughter," said Anna.
The well-being of a neuron depends on its ability to communicate with other neurons. Studies have shown that electrical and chemical stimulation from both a neuron's inputs and its targets support vital cellular processes. Neurons unable to connect effectively with other neurons atrophy. Useless, an abandoned neuron will die.
SEPTEMBER 2004
Although it was officially the beginning of fall semester at Harvard, the weather was steadfastly adhering to the rules according to the Roman calendar. It was a sticky eighty degrees that summer morning in September as Alice began her commute to Harvard Yard. In the days just before and following matriculation each year, it always amused her to see the first-year students who weren't from New England. Fall in Cambridge evoked images of vibrant leaves, apple picking, football games, and wool sweaters with scarves. While it wouldn't be unusual to wake up on a late September morning in Cambridge to find frost on the pumpkin, the days, especially in early September, were still filled with the sounds of window air conditioners tirelessly groaning and fevered, pathologically optimistic discussions about the Red Sox. Yet each year there they were, these newly transplanted students, moving with the uncertainty of unseasoned tourists along the sidewalks of Harvard Square, always burdened by too many layers of wool and fleece and an excess of shopping bags from the Harvard Coop packed with all the necessary desk gear and sweatshirts bearing the HARVARD brand. The poor sweaty things.
Even in her sleeveless white cotton T-shirt and ankle-length black rayon skirt, Alice felt uncomfortably damp by the time she reached Eric Wellman's office. Directly above hers, his was the same size, with the same furniture and the same view of the Charles River and Boston, but somehow his seemed more impressive and imposing. She always felt like a student whenever she was in his office, and that feeling hovered especially present today, as she'd been called in by him "to talk for a minute."
"How was your summer?" asked Eric.
"Very relaxing. How was yours?"
"Good, it went by too fast. We all missed seeing you at the conference in June."
"I know, I missed being there."
"Well, Alice, I wanted to talk with you about your course evaluations from last semester before classes begin."
"Oh, I haven't even had a chance to look at them yet."
An elastic-bound stack of evaluations from her motivation and emotion course sat somewhere in her office, unopened. Harvard's student evaluation responses were entirely anonymous and seen only by the instructor of the course and the chair of the department. In the past, she'd read them purely as a vanity check. She knew she was a great teacher, and her students' evaluations had always nodded in unwavering agreement. But Eric had never asked her to review them with him. She feared, for the very first time in her career, that she wouldn't like the image of herself she saw reflected in them.
"Here, take a few minutes and look them over now."
He handed her his copy of the stack with the summary page on top.
On a scale from one, disagree strongly, to five, agree strongly: The instructor held students to a high standard of performance. All fours and fives.
Class meetings enhanced an understanding of the material. Fours, threes, and twos.
The instructor helped me to understand difficult concepts and complex ideas. Again, fours, threes, and twos.
The instructor encouraged questions and the consideration of differing viewpoints. Two students gave her ones.
On a one-to-five scale from poor to excellent, give an overall evaluation of the instructor. Mostly threes. If she remembered correctly, she'd never received lower than a four in this category.
The entire summary page was splattered with threes, twos, and ones. She didn't try to convince herself that it represented anything but the accurate and thoughtful judgment of her students, without malice. Her teaching performance had outwardly suffered more than she'd been aware of. Still, she'd be willing to bet anything that she was far from the worst-rated teacher in the department. She might be sinking fast, but she was nowhere near the bottom of the barrel.
She looked up at Eric, ready to face the music, maybe not her favorite tune but probably not wholly unpleasant.
"If I hadn't seen your name on that summary, I wouldn't have thought anything of it. It's decent, not what I've ever seen attached to you, but not horrible. It's the written comments that are particularly worrisome, and I thought we should talk."
Alice hadn't looked beyond the summary page. He referred to his notes and read aloud.
"'She skips over huge sections of the outline, so you skip it, too, but then she expects us to know it for the exam.'
"'She doesn't seem to know the information she's teaching.'
"'Class was a waste of time. I could've just read the textbook.'
"'I had a hard time following her lectures. Even she gets lost in them. This class was nowhere near as good as her intro course.'
"'Once she came to class and didn't teach. She just sat down for a few minutes and left. Another time, she taught the exact same lecture she did the week before. I'd never dream of wasting Dr. Howland's time, but I don't think she should waste mine either.'"
That was tough to hear. It was much, much more than she'd been aware of.
"Alice, we've known each other a long time, right?"
"Yes."
"I'm going to risk being blunt and too personal here. Is everything okay at home?"
"Yes."
"How about you then, is it possible that you're overstressed or depressed?"
"No, that's not it."
"This is a little embarrassing to have to ask, but do you think you might have a drinking or substance problem?"
Now she'd heard enough. I can't live with a reputation of being a depressed, stressed-out addict. Having dementia has to carry less of a stigma than that.
"Eric, I have Alzheimer's disease."
His face went blank. He had been braced to hear about John's infidelity. He was ready with the name of a good psychiatrist. He was prepared to orchestrate an intervention or to have her admitted to McLean Hospital to dry out. He was not prepared for this.
"I was diagnosed in January. I had a hard time teaching last semester, but I didn't realize how much it showed."
"I'm sorry, Alice."
"Me, too."
"I wasn't expecting this."
"Neither was I."
"I was expecting something temporary, something you would get past. This isn't a temporary problem we're looking at."
"No, no, it's not."
Alice watched him think. He was like a father to everyone in the department, protective and generous, but also pragmatic and strict.
"Parents are paying forty grand a year now. This wouldn't go over well with them."
No, it certainly wouldn't. They weren't shelling out astronomical dollars to have their sons and daughters learn from someone with Alzheimer's. She could already hear the uproar, the scandalous sound bites on the evening news.
"Also, a couple of students from your class are contesting their grades. I'm afraid that would only escalate."
In twenty-five years of teaching, no one had ever contested a grade given by her. Not a single student.
"I think you probably shouldn't be teaching anymore, but I'd like to respect your time line. Do you have a plan?"
"I'd hoped to stay on for the year and then take my sabbatical, but I hadn't appreciated the extent to which my symptoms were showing and disrupting my lectures. I don't want to be a bad teacher, Eric. That's not who I am."
"I know it's not. How about a medical leave that would take you into your sabbatical year?"
He wanted her out now. She had an exemplary body of work and performance history, and most important, she had tenure. Legally, they couldn't fire her. But that was not how she wanted to handle this. As much as she didn't want to give up her career at Harvard, her fight was with Alzheimer's disease, not with Eric or Harvard University.
"I'm not ready to leave, but I agree with you, as much as it breaks my heart, I think I should stop teaching. I'd like to stay on as Dan's adviser, though, and I'd like to continue to attend seminars and meetings."
I am no longer a teacher.
"I think we can work that out. I'd like you to have a talk with Dan, explain to him what's going on and leave the decision up to him. I'd be happy to coadvise with you if that makes either of you more comfortable. Also, obviously, you shouldn't take on any new graduate students. Dan will be the last."
I am no longer a research scientist.
"You probably shouldn't be accepting invitations to speak at other universities or conferences. It probably wouldn't be a good idea for you to be representing Harvard in that kind of capacity. I have noticed that you've stopped traveling for the most part, so maybe you've already recognized this."
"Yes, I agree."
"How do you want to handle telling the administrative faculty and people in the department? Again, I'll respect your time line here, whatever you want to do."
She was going to stop teaching, researching, traveling, and lecturing. People were going to notice. They were going to speculate and whisper and gossip. They were going to think she was a depressed, stressed-out addict. Maybe some of them already did.
"I'll tell them. It should come from me."
September 17, 2004Dear Friends and Colleagues,Upon thoughtful consideration and with deep sorrow, I have decided to step down from my teaching, research, and traveling responsibilities at Harvard. In January of this year, I was diagnosed with early-onset Alzheimer's disease. While I am likely still in the early to moderate stages of the disease, I've been experiencing unpredictable cognitive lapses that make it impossible for me to meet the demands of this position with the highest of standards that I've always held myself to and that are expected here.While you'll no longer see me at the podium in the lecture auditoriums or busy writing new grant proposals, I will remain on as Dan Maloney's thesis adviser, and I'll still attend meetings and seminars, where it is my hope to continue to serve as an active and welcome participant.With greatest affection and respect,
Alice Howland THE FIRST WEEK OF THE fall semester, Marty took over Alice's teaching responsibilities. When she met with him to hand over the syllabus and lecture materials, he hugged her and said how very sorry he was. He asked her how she was feeling and if there was anything he could do. She thanked him and told him she was feeling fine. And as soon as he had everything he needed for the course, he left her office as fast as he could.
Pretty much the same drill followed with everyone in the department.
"I'm so sorry, Alice."
"I just can't believe it."
"I had no idea."
"Is there anything I can do?"
"Are you sure? You don't look any different."
"I'm so sorry."
"I'm so sorry."
Then they left her alone as quickly as possible. They were politely kind to her when they ran into her, but they didn't run into her very often. This was largely because of their busy schedules and Alice's now rather empty one. But a not so insignificant reason was because they chose not to. Facing her meant facing her mental frailty and the unavoidable thought that, in the blink of an eye, it could happen to them. Facing her was scary. So for the most part, except for meetings and seminars, they didn't.
TODAY WAS THE FIRST PSYCHOLOGY Lunch Seminar of the semester. Leslie, one of Eric's graduate students, stood poised and ready at the head of the conference table with the title slide already projected onto the screen. "Searching for Answers: How Attention Affects the Ability to Identify What We See." Alice felt poised and ready as well, sitting in the first seat at the table, across from Eric. She began eating her lunch, an eggplant calzone and a garden salad, while Eric and Leslie talked, and the room filled in.
After a few minutes, Alice noticed that every seat at the table was occupied except for the one next to her, and people had begun taking up standing positions at the back of the room. Seats at the table were highly coveted, not only because the location made it easier to see the presentation but because sitting eliminated the awkward juggling of plate, utensils, drink, pen, and notebook. Apparently, that juggling was less awkward than sitting next to her. She looked at everyone not looking at her. About fifty people crowded into the room, people she'd known for many years, people she'd thought of as family.
Dan rushed in, his hair disheveled, his shirt untucked, wearing glasses instead of contact lenses. He paused for a moment, then went straight for the open seat next to Alice and declared it his by plopping his notebook down on the table.
"I was up all night writing. Gotta get some food, be right back."
Leslie's talk ran the full hour. It took an excessive amount of energy, but Alice followed her to the end. After Leslie advanced past the last slide and the screen went blank, she opened up the floor to discussion. Alice went first.
"Yes, Dr. Howland," said Leslie.
"I think you're missing a control group that measures the actual distractibility of your distracters. You could argue that some, for whatever reason, simply aren't noticed, and their mere presence isn't distracting. You could test the ability of the subjects to simultaneously notice and attend to the distracter, or you could run a series where you swap out the distracter for the target."
Many at the table nodded. Dan uh-huhed through a mouthful of calzone. Leslie grabbed her pen even before Alice finished her thought and took vigorous notes.
"Yes. Leslie, go back to the experimental design slide for a moment," said Eric.
Alice looked around the room. Everyone's eyes were glued to the screen. They listened intently as Eric elaborated on Alice's comment. Many continued nodding. She felt victorious and a little smug. The fact that she had Alzheimer's didn't mean that she was no longer capable of thinking analytically. The fact that she had Alzheimer's didn't mean that she didn't deserve to sit in that room among them. The fact that she had Alzheimer's didn't mean that she no longer deserved to be heard.
The questions and answers and follow-up questions and answers continued for several minutes. Alice finished her calzone and her salad. Dan got up and came back with seconds. Leslie stumbled through an answer to an antagonistic question asked by Marty's new postdoc. Her experimental design slide was projected on the screen. Alice read it and raised her hand.
"Yes, Dr. Howland?" asked Leslie.
"I think you're missing a control group that measures the actual effectiveness of your distracters. It's possible that some of them simply aren't noticed. You could test their distractibility simultaneously, or you might swap out the distracter for the target."
It was a valid point. It was, in fact, the proper way to do the experiment, and her paper wouldn't be publishable without that possibility satisfied. Alice was sure of it. Yet no one else seemed to see it. She looked at everyone not looking at her. Their body language suggested embarrassment and dread. She reread the data on the screen. That experiment needed an additional control. The fact that she had Alzheimer's didn't mean that she couldn't think analytically. The fact that she had Alzheimer's didn't mean that she didn't know what she was talking about.
"Ah, okay, thanks," said Leslie.
But she didn't take any notes, and she didn't look Alice in the eye, and she didn't seem at all grateful.
SHE HAD NO CLASSES TO teach, no grants to write, no new research to conduct, no conferences to attend, and no invited lectures to give. Ever again. She felt like the biggest part of her self, the part she'd praised and polished regularly on its mighty pedestal, had died. And the other smaller, less admired parts of her self wailed with self-pitying grief, wondering how they would matter at all without it.
She looked out her enormous office window and watched the joggers as they traced the winding edges of the Charles.
"Will you have time for a run today?" she asked.
"Maybe," said John.
He looked out the window, too, as he drank his coffee. She wondered what he saw, if his eyes were drawn to the same joggers or if he saw something entirely different.
"I wish we'd spent more time together," she said.
"What do you mean? We just spent the whole summer together."
"No, not the summer, our whole lives. I've been thinking about it, and I wish we'd spent more time together."
"Ali, we live together, we work at the same place, we've spent our whole lives together."
In the beginning, they did. They lived their lives together, with each other. But over the years, it had changed. They had allowed it to change. She thought about the sabbaticals apart, the division of labor over the kids, the travel, their singular dedication to work. They'd been living next to each other for a long time.
"I think we left each other alone for too long."
"I don't feel left alone, Ali. I like our lives, I think it's been a good balance between an independence to pursue our own passions and a life together."
She thought about his pursuit of his passion, his research, always more extreme than hers. Even when the experiments failed him, when the data weren't consistent, when the hypotheses turned out to be wrong, his love for his passion never wavered. However flawed, even when it kept him up all night tearing his hair out, he loved it. The time, care, attention, and energy he gave to it had always inspired her to work harder at her own research. And she did.
"You're not left alone, Ali. I'm right here with you."
He looked at his watch, then downed the rest of his coffee.
"I've got to run to class."
He picked up his bag, tossed his cup in the trash, and went over to her. He bent down, held her head of curly black hair in his hands, and kissed her gently. She looked up at him and pressed her lips into a thin smile, holding back her tears just long enough for him to leave her office.
She wished she'd been his passion.
SHE SAT IN HER OFFICE while her cognition class met without her and watched the shiny traffic creep along Memorial Drive. She sipped her tea. She had the whole day in front of her with nothing to do. Her hip began to vibrate. 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. September
34 Poplar Street, Cambridge
William James Hall, room 1002
September 14
Three
She sipped her tea and watched the shiny traffic creep along Memorial Drive.
OCTOBER 2004
She sat up in bed and wondered what to do. It was dark, still middle of the night. She wasn't confused. She knew she should be sleeping. John lay on his back next to her, snoring. But she couldn't fall asleep. She'd been having a lot of trouble sleeping through the night lately, probably because she was napping a lot during the day. Or was she napping a lot during the day because she wasn't sleeping well at night? She was caught in a vicious cycle, a positive feedback loop, a dizzying ride that she didn't know how to step off. Maybe, if she fought through the urge to nap during the day, she'd sleep through the night and break the pattern. But every day, she felt so exhausted by late afternoon that she always succumbed to a rest on the couch. And the rest always seduced her to sleep.
She remembered facing a similar dilemma when her children were around two years old. Without an afternoon nap, they turned miserable and uncooperative by the evening. With a nap, they stayed wide awake hours past their usual bedtime. She couldn't remember the solution.
With all the pills I'm taking, you'd think at least one would have drowsiness as a side effect. Oh, wait. I have that sleeping pill prescription.
She got out of bed and walked downstairs. Although fairly confident it wasn't in there, she emptied her baby blue bag first. Wallet, BlackBerry, cell phone, keys. She opened her wallet. Credit card, bank card, license, Harvard ID, health insurance card, twenty dollars, a handful of change.
She rifled through the white mushroom bowl where they kept the mail. Light bill, gas bill, phone bill, mortgage statement, something from Harvard, receipts.
She opened and emptied the contents of the drawers to the desk and file cabinet in the study. She emptied the magazines and catalogs out of the baskets in the living room. She read a couple of pages from The Week magazine and dog-eared a page in the J. Jill catalog with a cute sweater. She liked it in sea-foam blue.
She opened the junk drawer. Batteries, a screwdriver, Scotch tape, blue tape, glue, keys, a number of chargers, matches, and so much more. This drawer probably hadn't been organized in years. She pulled the drawer completely off its tracks and dumped the entirety of its contents onto the kitchen table.
"Ali, what are you doing?" asked John.
Startled, she looked up at his bewildered hair and squinting eyes.
"I'm looking for..."
She looked down at the items jumbled before her on the table. Batteries, a sewing kit, glue, a tape measurer, several chargers, a screwdriver.
"I'm looking for something."
"Ali, it's after three. You're making a racket down here. Can you look for it in the morning?"
His voice sounded impatient. He didn't like having his sleep disrupted.
"Okay."
She lay in bed and tried to remember what she'd been looking for. It was dark, still middle of the night. She knew she should be sleeping. John had fallen back to sleep without ceremony and was already snoring. He was a fast sleeper. She used to be, too. But she couldn't fall asleep. She'd been having a lot of trouble sleeping through the night lately, probably because she was napping a lot during the day. Or was she napping a lot during the day because she wasn't sleeping well at night? She was caught in a vicious cycle, a positive feedback loop, a dizzying ride that she didn't know how to step off.
Oh, wait. I have a way to get to sleep. I have those pills from Dr. Moyer. Where did I put them?
She got out of bed and walked downstairs.
THERE WERE NO MEETINGS OR seminars today. None of the textbooks, periodicals, or mail in her office interested her. Dan didn't have anything ready for her to read. She had nothing new in her inbox. Lydia's daily email wouldn't come until after noon. She watched the movement outside her window. Cars zipped around the curves of Memorial Drive, and joggers ran along the curves of the river. The tops of pine trees swayed in the turbulent fall air.
She pulled all of the folders out of the bin marked HOWLAND REPRINTS from her file cabinet. She'd authored well over a hundred published papers. She held this stack of research articles, commentaries, and reviews, her truncated career's worth of thoughts and opinions, in her hands. It was heavy. Her thoughts and opinions carried weight. At least, they used to. She missed her research, thinking about it, talking about it, her own ideas and insights, the elegant art of her science.
She put the pile of folders down and selected her From Molecules to Mind textbook from the bookcase. It, too, was heavy. It was her proudest written achievement, her words and ideas blended with John's, creating something together that was unique in this universe, informing and influencing the words and ideas of others. She'd assumed they'd write another someday. She flipped through the pages without being lured in. She didn't feel like reading that either.
She checked her watch. She and John were supposed to go for a run at the end of the day. That was way too many hours away. She decided to run home.
Their house was only about a mile from her office, and she got there quickly and easily. Now what? She walked into the kitchen to make some tea. She filled the kettle with tap water, placed it back on the stove, and turned the burner knob to Hi. She went to get a tea bag. The tin container where she kept the tea bags wasn't anywhere on the counter. She opened the cabinet where she kept the coffee mugs. She stared instead at three shelves of plates. She opened the cabinet to the right of that, where she expected to see rows of glasses, but instead it housed bowls and mugs.
She took the bowls and mugs out of the cabinet and put them on the counter. Then, she removed the plates and placed them next to the bowls and mugs. She opened the next cabinet. Nothing right in there either. The counter was soon stacked high with plates, bowls, mugs, juice glasses, water glasses, wineglasses, pots, pans, Tupperware, pot holders, dish towels, and silverware. The entire kitchen was inside out. Now, where did I have it all before? The teakettle shrilled, and she couldn't think. She turned the burner knob to Off.
She heard the front door open. Oh good, John's home early.
"John, why did you do this to the kitchen?" she hollered.
"Alice, what are you doing?"
The woman's voice startled her.
"Oh, Lauren, you scared me."
It was her neighbor who lived across the street. Lauren didn't say anything.
"I'm sorry, would you like to sit down? I was about to make some tea."
"Alice, this isn't your kitchen."
What? She looked around the room--black granite countertops, birch cabinets, white tile floor, window over the sink, dishwasher to the right of the sink, double oven. Wait, she didn't have a double oven, did she? Then, for the first time, she noticed the refrigerator. The smoking gun. The collage of pictures stuck with magnets to its door were of Lauren and Lauren's husband and Lauren's cat and babies Alice didn't recognize.
"Oh, Lauren, look what I did to your kitchen. I'll help you put everything back."
"That's okay, Alice. Are you all right?"
"No, not really."
She wanted to run home to her own kitchen. Couldn't they just forget this happened? Did she really have to have the I-have-Alzheimer's-disease conversation right now? She hated the I-have-Alzheimer's-disease conversation.
Alice tried to read Lauren's face. She looked baffled and scared. Her face was thinking, Alice might be crazy. Alice closed her eyes and took a deep breath.
"I have Alzheimer's disease."
She opened her eyes. The look on Lauren's face didn't change.
NOW, EVERY TIME SHE ENTERED the kitchen, she checked the refrigerator, just to be sure. No pictures of Lauren. She was in the right house. In case that didn't remove all doubt, John had written a note in big black letters and stuck it with a magnet to the refrigerator door.
ALICE,DO NOT GO RUNNING WITHOUT ME.MY CELL: 617-555-1122ANNA: 617-555-1123TOM: 617-555-1124 John had made her promise not to go running without him. She'd sworn she wouldn't and crossed her heart. Of course, she might forget.
Her ankle could probably use the time off anyway. She'd rolled it stepping off a curb last week. Her spatial perception was a bit off. Objects sometimes appeared closer or farther or generally somewhere other than where they actually were. She'd had her eyes checked. Her vision was fine. She had the eyes of a twenty-year-old. The problem wasn't with her corneas, lenses, or retinas. The glitch was somewhere in the processing of visual information, somewhere in her occipital cortex, said John. Apparently, she had the eyes of a college student and the occipital cortex of an octogenarian.
No running without John. She might get lost or hurt. But lately there was no running with John either. He'd been traveling a lot, and when he wasn't out of town, he left the house for Harvard early and worked late. By the time he got home, he was always too tired. She hated depending on him to go running, especially since he wasn't dependable.
She picked up the phone and dialed the number on the refrigerator.
"Hello?"
"Are we going for a run today?" she asked.
"I don't know, maybe, I'm in a meeting. I'll call you later," said John.
"I really need to go for a run."
"I'll call you later."
"When?"
"When I can."
"Fine."
She hung up the phone, looked out the window and then down at the running shoes on her feet. She peeled them off and threw them at the wall.
She tried to be understanding. He needed to work. But why didn't he understand that she needed to run? If something as simple as regular exercise really did counter the progression of this disease, then she should be running as often as she could. Each time he told her "Not today," she might be losing more neurons that she could have saved. Dying needlessly faster. John was killing her.
She picked up the phone again.
"Yes?" asked John, hushed and annoyed.
"I want you to promise that we'll run today."
"Excuse me for a minute," he said to someone else. "Please, Alice, let me call you after I get out of this meeting."
"I need to run today."
"I don't know yet when my day's going to end."
"So?"
"This is why I think we should get you a treadmill."
"Oh, fuck you," she said, hanging up.
She supposed that wasn't very understanding. She flashed to anger a lot lately. Whether this was a symptom of her disease advancing or a justified response, she couldn't say. She didn't want a treadmill. She wanted him. Maybe she shouldn't be so stubborn. Maybe she was killing herself, too.
She could always walk somewhere without him. Of course, this somewhere had to be somewhere "safe." She could walk to her office. But she didn't want to go to her office. She felt bored, ignored, and alienated in her office. She felt ridiculous there. She didn't belong there anymore. In all the expansive grandeur that was Harvard, there wasn't room there for a cognitive psychology professor with a broken cognitive psyche.
She sat in her living room armchair and tried to think of what to do. Nothing meaningful enough came to her. She tried to imagine tomorrow, next week, the coming winter. Nothing meaningful enough came to her. She felt bored, ignored, and alienated in her living room armchair. The late afternoon sun cast strange, Tim Burton shadows that slithered and undulated across the floor and up the walls. She watched the shadows dissolve and the room dim. She closed her eyes and fell asleep.
ALICE STOOD IN THEIR BEDROOM, naked but for a pair of ankle socks and her Safe Return bracelet, wrestling and growling at an article of clothing stretched around her head. Like a Martha Graham dance, her battle against the fabric shrouding her head looked like a physical and poetic expression of anguish. She let out a long scream.
"What's happening?" asked John, running in.
She looked at him with one panicked eye through a round hole in the twisted garment.
"I can't do this! I can't figure out how to put on this fucking sports bra. I can't remember how to put on a bra, John! I can't put on my own bra!"
He went to her and examined her head.
"That's not a bra, Ali, it's a pair of underwear."
She burst into laughter.
"It's not funny," said John.
She laughed harder.
"Stop it, it's not funny. Look, if you want to go running, you have to hurry up and get dressed. I don't have a lot of time."
He left the room, unable to watch her standing there, naked with her underwear on her head, laughing at her own absurd madness.
ALICE KNEW THAT THE YOUNG woman sitting across from her was her daughter, but she had a disturbing lack of confidence in this knowledge. She knew that she had a daughter named Lydia, but when she looked at the young woman sitting across from her, knowing that she was her daughter Lydia was more academic knowledge than implicit understanding, a fact she agreed to, information she'd been given and accepted as true.
She looked at Tom and Anna, also sitting at the table, and she could automatically connect them with the memories she had of her oldest child and her son. She could picture Anna in her wedding gown, in her law school, college, and high school graduation gowns, and in the Snow White nightgown she'd insisted on wearing every day when she was three. She could remember Tom in his cap and gown, in a cast when he broke his leg skiing, in braces, in his Little League uniform, and in her arms when he was an infant.
She could see Lydia's history as well, but somehow this woman sitting across from her wasn't inextricably connected to her memories of her youngest child. This made her uneasy and painfully aware that she was declining, her past becoming unhinged from her present. And how strange that she had no problem identifying the man next to Anna as Anna's husband, Charlie, who had entered their lives only a couple of years ago. She pictured her Alzheimer's as a demon in her head, tearing a reckless and illogical path of destruction, ripping apart the wiring from "Lydia now" to "Lydia then," leaving all the "Charlie" connections unscathed.
The restaurant was crowded and noisy. Voices from other tables competed for Alice's attention, and the music in the background moved in and out of the foreground. Anna's and Lydia's voices sounded the same to her. Everyone used too many pronouns. She struggled to locate who was talking at her table and to follow what was being said.
"Honey, you okay?" asked Charlie.
"The smells," said Anna.
"You want to go outside for a minute?" asked Charlie.
"I'll go with her," said Alice.
Alice's back tensed as soon as they left the cozy warmth of the restaurant. They'd both forgotten to bring their coats. Anna grabbed Alice's hand and led her away from a circle of young smokers hovering near the door.
"Ahh, fresh air," said Anna, taking a luxurious breath in and out through her nose.
"And quiet," said Alice.
"How are you feeling, Mom?"
"I'm okay," said Alice.
Anna rubbed the back of Alice's hand, the hand she was still holding.
"I've been better," she admitted.
"Same here," said Anna. "Were you sick like this when you were pregnant with me?"
"Uh-huh."
"How did you do it?"
"You just keep going. It'll stop soon."
"And before you know it, the babies will be here."
"I can't wait."
"Me, too," Anna said. But her voice didn't carry the same exuberance Alice's did. Her eyes suddenly filled with tears.
"Mom, I feel sick all the time, and I'm exhausted, and every time I forget something I think I'm becoming symptomatic."
"Oh, sweetie, you're not, you're just tired."
"I know, I know. It's just when I think about you not teaching anymore and everything you're losing--"
"Don't. This should be an exciting time for you. Please, just think about what we're gaining."
Alice squeezed the hand she held and placed her other one gently on Anna's stomach. Anna smiled, but the tears still spilled out of her overwhelmed eyes.
"I just don't know how I'm going to handle it all. My job and two babies and--"
"And Charlie. Don't forget about you and Charlie. Keep what you have with him. Keep everything in balance--you and Charlie, your career, your kids, everything you love. Don't take any of the things you love in your life for granted, and you'll do it all. Charlie will help you."
"He better," Anna threatened.
Alice laughed. Anna wiped her eyes several times with the heels of her hands and blew a long, Lamaze-like breath out through her mouth.
"Thanks, Mom. I feel better."
"Good."
Back inside the restaurant, they settled into their seats and ate dinner. The young woman across from Alice, her youngest child, Lydia, clanged her empty wineglass with her knife.
"Mom, we'd like to give you your big gift now."
Lydia presented her with a small, rectangular package wrapped in gold paper. It must have been big in significance. Alice untaped the paper. Inside were three DVDs--The Howland Kids, Alice and John, and Alice Howland.
"It's a video memoir for you. The Howland Kids is a collection of interviews of Anna, Tom, and me. I shot them this summer. It's our memories of you and our childhoods and growing up. The one with Dad is of his memories of meeting you and dating and your wedding and vacations and lots of other stuff. There are a couple of really great stories in that one that none of us kids knew about. The third one I haven't made yet. It's an interview of you, of your stories, if you want to do it."
"I absolutely want to do it. I love it. Thank you, I can't wait to watch them."
The waitress brought them coffee, tea, and chocolate cake with a candle in it. They all sang "Happy Birthday." Alice blew out the candle and made a wish.
NOVEMBER 2004
The movies that John had bought over the summer now fell into the same unfortunate category as the abandoned books they'd replaced. She could no longer follow the thread of the plot or remember the significance of the characters if they weren't in every scene. She could appreciate small moments but retained only a general sense of the film after the credits rolled. That movie was funny. If John or Anna watched with her, they would many times roar with laughter or jump with alarm or cringe with disgust, reacting in an obvious, visceral way to something that happened, and she wouldn't understand why. She would join in, faking it, trying to protect them from how lost she was. Watching movies made her keenly aware of how lost she was.
The DVDs Lydia had made came at just the right time. Each story told by John and the kids ran only a few minutes long, so she could absorb each one, and she didn't have to actively hold the information in any particular story to understand or enjoy the others. She watched them over and over. She didn't remember everything they talked about, but this felt completely normal, for each of her children and John didn't remember all of the details either. And when Lydia asked them all to recount the same event, each remembered it somewhat differently, omitting some parts, exaggerating others, emphasizing their own individual perspectives. Even biographies not saturated with disease were vulnerable to holes and distortions.
She could only stomach watching the Alice Howland video once. She used to be so eloquent, so comfortable talking in front of any audience. Now, she overused the word thingy and repeated herself an embarrassing number of times. But she felt grateful to have it, her memories, reflections, and advice recorded and pinned down, safe from the molecular mayhem of Alzheimer's disease. Her grandchildren would watch it someday and say, "That's Grandma when she could still talk and remember things."
She had just finished watching Alice and John. She remained on the couch with a blanket on her lap after the television screen faded to black and listened. The quiet pleased her. She breathed and thought of nothing for several minutes but the sound of the ticking clock on the fireplace mantel. Then, suddenly, the ticking took on meaning, and her eyes popped open.
She looked at the hands. Ten minutes until ten o'clock. Oh my god, what am I still doing here? She threw the blanket onto the floor, crammed her feet into her shoes, ran into the study, and clicked her laptop bag shut. Where's my blue bag? Not on the chair, not on the desk, not in the desk drawers, not in the laptop bag. She jogged up to her bedroom. Not on her bed, not on the night table, not on the dresser, not in the closet, not on the desk. She was standing in the hallway, retracing her whereabouts in her boggled mind, when she saw it, hanging on the bathroom doorknob.
She unzipped it. Cell phone, BlackBerry, no keys. She always put them in there. Well, that wasn't entirely true. She always meant to put them in there. Sometimes, she put them in her desk drawer, the silverware drawer, her underwear drawer, her jewelry box, the mailbox, and any number of pockets. Sometimes, she simply left them in the keyhole. She hated to think of how many minutes each day she spent looking for her own misplaced things.
She bolted back downstairs to the living room. No keys, but she found her coat on the wing chair. She put it on and shoved her hands in the pockets. Keys!
She raced to the front hallway, but then stopped before she could reach the door. It was the strangest thing. There was a large hole in the floor just in front of the door. It spanned the width of the hallway and was about eight or nine feet in length, with nothing but the dark basement below it. It was impassable. The front hall floorboards were warped and creaky, and she and John had talked recently about replacing them. Had John hired a contractor? Had someone been here today? She couldn't remember. Whatever the reason, there was no using the front door until the hole was fixed.
On her way to the back door, the phone rang.
"Hi, Mom. I'll be over around seven, and I'll bring dinner."
"Okay," said Alice, a slight rise in her tone.
"It's Anna."
"I know."
"Dad's in New York until tomorrow, remember? I'm sleeping over tonight. I can't get out of work before six thirty, though, so wait for me to eat. Maybe you should write this down on the whiteboard on the fridge."
She looked over at the whiteboard.
DO NOT GO RUNNING WITHOUT ME.
Provoked, she wanted to scream into the phone that she didn't need a babysitter, and she could manage just fine alone in her own house. She breathed instead.
"Okay, see you later."
She hung up the phone and congratulated herself on still having editorial control over her raw emotions. Someday soon, she wouldn't. She would enjoy seeing Anna, and it would be good not to be alone.
She had her coat on and her laptop and baby blue bag slung over her shoulder. She looked out the kitchen window. Windy, damp, gray. Morning, maybe? She didn't feel like going outside, and she didn't feel like sitting in her office. She felt bored, ignored, and alienated in her office. She felt ridiculous there. She didn't belong there anymore.
She removed her bags and coat and headed for the study, but a sudden thud and clink made her backtrack to the front hallway. The mail had just been delivered through the slot in the door, and it lay on top of the hole, somehow hovering there. It had to be balancing on an underlying beam or floorboard that she couldn't see. Floating mail. My brain is fried! She retreated into the study and tried to forget about the gravity-defying hole in the front hallway. It was surprisingly difficult.
SHE SAT IN HER STUDY, hugging her knees, staring out the window at the darkened day, waiting for Anna to come over with dinner, waiting for John to return from New York so she could go for a run. She was sitting and waiting. She was sitting and waiting to get worse. She was sick of just sitting and waiting.
She was the only person she knew with early-onset Alzheimer's disease at Harvard. She was the only person she knew anywhere with early-onset Alzheimer's. Surely, she wasn't the only one anywhere. She needed to find her new colleagues. She needed to inhabit this new world she found herself in, this world of dementia.
She typed the words "early-onset Alzheimer's disease" into Google. It pulled up a lot of facts and statistics.
There are an estimated five hundred thousand people in the United States with early-onset Alzheimer's disease.Early-onset is defined as Alzheimer's under the age of sixty-five.Symptoms can develop in the thirties and forties. It pulled up sites with lists of symptoms, genetic risk factors, causes, and treatments. It pulled up articles about research and drug discovery. She'd seen all this before.
She added the word "support" to her Google search and hit the return key.
She found forums, links, resources, message boards, and chat rooms. For caregivers. Caregiver help topics included visiting the nursing facility, questions about medications, stress relief, dealing with delusions, dealing with night wandering, coping with denial and depression. Caregivers posted questions and answers, commiserating about and troubleshooting issues regarding their eighty-one-year-old mothers, their seventy-four-year-old husbands, and their eighty-five-year-old grandmothers with Alzheimer's disease.
What about support for the people with Alzheimer's disease? Where are the other fifty-one-year-olds with dementia? Where are the other people who were in the middle of their careers when this diagnosis ripped their lives right out from under them? She didn't deny that getting Alzheimer's was tragic at any age. She didn't deny that caregivers needed support. She didn't deny that they suffered. She knew that John suffered. But what about me?
She remembered the business card of the social worker at Mass General Hospital. She found it and dialed the number.
"Denise Daddario."
"Hi, Denise, this is Alice Howland. I'm a patient of Dr. Davis, and he gave me your card. I'm fifty-one, and I was diagnosed with early-onset Alzheimer's almost a year ago. I was wondering, does MGH run any sort of support group for people with Alzheimer's?"
"No, unfortunately we don't. We have a support group, but it's only for caregivers. Most of our patients with Alzheimer's wouldn't be capable of participating in that kind of forum."
"But some would."
"Yes, but I'm afraid we don't have the numbers to justify the resources it would take to get that kind of group up and running."
"What kinds of resources?"
"Well, with our caregivers' support group, about twelve to fifteen people meet every week for a couple of hours. We have a room reserved, coffee, pastries, a couple of people on staff who act as facilitators, and a guest speaker once a month."
"What about just an empty room where people with early-onset dementia can meet and talk about what we're experiencing?"
I can bring the coffee and jelly donuts, for god's sake.
"We'd need someone on staff at the hospital to oversee it, and we unfortunately don't have anyone available right now."
How about one of the two facilitators from your caregivers' support group?
"Can you give me the contact information for the patients you know of with early-onset dementia so I can try to organize something on my own?"
"I'm afraid I can't give out that information. Would you like to make an appointment to come in and talk with me? I have an opening at ten in the morning on Friday, December seventeenth."
"No thanks."
A NOISE AT THE FRONT door woke her from her nap on the couch. The house was cold and dark. The front door squeaked as it opened.
"Sorry I'm late!"
Alice rose and walked to the hallway. Anna stood there with a big brown paper bag in one hand and a jumbled pile of mail in the other. She was standing on the hole!
"Mom, all the lights are off in here. Were you sleeping? You shouldn't be napping this late in the day, you'll never sleep tonight."
Alice walked over to her and crouched down. She put her hand on the hole. Only it wasn't empty space she felt. She ran her fingers over the looped wool of a black rug. Her black hallway rug. It'd been there for years. She smacked it with her open hand so hard the sound she made echoed.
"Mom, what are you doing?"
Her hand stung, she was too tired to endure the humiliating answer to Anna's question, and an overpowering peanut smell coming from the bag disgusted her.
"Leave me alone!"
"Mom, it's okay. Let's go in the kitchen and have dinner."
Anna put the mail down and reached for her mother's hand, the hand that stung. Alice flung it away from her and screamed.
"Leave me alone! Get out of my house! I hate you! I don't want you here!"
Her words hit Anna's face harder than if she'd slapped her. Through the tears that streamed down it, Anna's expression clenched into calm resolve.
"I brought dinner, I'm starving, and I'm staying. I'm going into the kitchen to eat, and then I'm going to bed."
Alice stood in the hallway alone, fury and fight raging madly through her veins. She opened the door and began pulling at the rug. She yanked with all her strength and was knocked down. She got up and pulled and twisted and wrestled it until it was entirely outside. Then, she kicked and screamed wildly at it until it limped down the front steps and lay lifeless on the sidewalk.
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. November
Cambridge
Harvard
September
Three
DECEMBER 2004
Dan's thesis numbered 142 pages, not including references. Alice hadn't read anything that long in a long time. She sat on the couch with Dan's words in her lap, a red pen balanced on her right ear, and a pink highlighter in her right hand. She used the red pen for editing and the pink highlighter for keeping track of what she'd already read. She highlighted anything that struck her as important, so when she needed to backtrack, she could limit her rereading to the colored words.
She became hopelessly stalled on page twenty-six, which was saturated in pink. Her brain felt overwhelmed and begged her for rest. She imagined the pink words on the page transforming into sticky pink cotton candy in her head. The more she read, the more she needed to highlight to understand and remember what she was reading. The more she highlighted, the more her head became packed with pink, woolly sugar, clogging and muffling the circuits in her brain that were needed to understand and remember what she was reading. By page twenty-six, she understood nothing.
Beep, beep.
She tossed Dan's thesis onto the coffee table and went to the computer in the study. She found one new email in her inbox, from Denise Daddario.
Dear Alice,I've shared your idea for an early-stage dementia support group with the other early-onsetters here in our unit and with the folks at Brigham and Women's Hospital. I've heard back from three people who are local and very interested in this idea. They've given me permission to give you their names and contact information (see attachment).You might also want to contact the Mass Alzheimer's Association. They may know of others who'd want to meet with you.Keep me posted with how it goes, and let me know if I can provide you with any other information or advice. I'm sorry we couldn't formally do more for you here.Good luck!Denise Daddario She opened the attachment.
Mary Johnson, age fifty-seven, Frontotemporal lobe dementia
Cathy Roberts, age forty-eight, Early-onset Alzheimer's disease
Dan Sullivan, age fifty-three, Early-onset Alzheimer's disease
There they were, her new colleagues. She read their names over and over. Mary, Cathy, and Dan. Mary, Cathy, and Dan. She began to feel the kind of wondrous excitement mixed with barely suppressed dread she'd experienced in the weeks before her first days of kindergarten, college, and graduate school. What did they look like? Were they still working? How long had they been living with their diagnoses? Were their symptoms the same, milder, or worse? Were they anything like her? What if I'm much further along than they are?
Dear Mary, Cathy, and Dan,My name is Alice Howland. I am fifty-one years old and was diagnosed with early-onset Alzheimer's disease last year. I was a psychology professor at Harvard University for twenty-five years but essentially failed out of my position due to my symptoms this September.Now I'm home and feeling really alone in this. I called Denise Daddario at MGH for information on an early-stage dementia support group. They only have one for caregivers, nothing for us. But she gave me your names.I'd like to invite you all to my house for tea, coffee, and conversation this Sunday, December 5, at 2:00. Your caregivers are welcome to come and stay if you'd like. Attached are my address and directions.I'm looking forward to meeting you,Alice Mary, Cathy, and Dan. Mary, Cathy, and Dan. Dan. Dan's thesis. He's waiting for my edits. She returned to the living room couch and opened Dan's thesis to page twenty-six. The pink rushed into her head. Her head ached. She wondered if anyone had replied yet. She abandoned Dan's thingy before she even finished the thought.
She clicked on her inbox. Nothing new.
Beep, beep.
She picked up the phone.
"Hello?"
Dial tone. She'd hoped it was Mary, Cathy, or Dan. Dan. Dan's thesis.
Back on the couch, she looked poised and active with the highlighter in her hand, but her eyes weren't focused on the letters on the page. Instead, she daydreamed.
Could Mary, Cathy, and Dan still read twenty-six pages and understand and remember all that they read? What if I'm the only one who thinks the hallway rug could be a hole? What if she was the only one declining? She could feel herself declining. She could feel herself slipping into that demented hole. Alone.
"I'm alone, I'm alone, I'm alone," she moaned, sinking further into the truth of her lonely hole each time she heard her own voice say the words.
Beep, beep.
The doorbell snapped her out of it. Were they here? Had she invited them over today?
"Just a minute!"
She rubbed her eyes with her sleeves, combed her fingers through her matted hair as she walked, took a deep breath, and opened the door. There was no one there.
Auditory and visual hallucinations were realities for about half of people with Alzheimer's disease, but so far she hadn't experienced any. Or maybe she had. When she was alone, there wasn't any clear way of knowing whether what she experienced was reality or her reality with Alzheimer's. It wasn't as if her disorientations, confabulations, delusions, and all other demented thingies were highlighted in fluorescent pink, unmistakably distinguishable from what was normal, actual, and correct. From her perspective, she simply couldn't tell the difference. The rug was a hole. That noise was the doorbell.
She checked her inbox again. One new email.
Hi Mom,How are you? Did you go to the lunch seminar yesterday? Did you run? My class was great, as usual. I had another audition today for a bank commercial. We'll see. How's Dad doing? Is he home this week? I know last month was hard. Hang in there. I'll be home soon!Love,Lydia Beep, beep.
She picked up the phone.
"Hello?"
Dial tone. She opened the top file cabinet drawer, dropped the phone inside, heard it hit the metal bottom beneath hundreds of hanging reprints, and slid the drawer shut. Wait, maybe it's my cell phone.
"Cell phone, cell phone, cell phone," she chanted aloud as she roamed the house, trying to keep the goal of her search present.
She checked everywhere but couldn't find it. Then she figured out that she needed to be looking for her baby blue bag. She changed the chant.
"Blue bag, blue bag, blue bag."
She found it on the kitchen counter, her cell phone inside, but off. Maybe the noise was someone's car alarm locking or unlocking outside. She resumed her position on the couch and opened Dan's thesis to page twenty-six.
"Hello?" asked a man's voice.
Alice looked up, eyes wide, and listened, as if she'd just been summoned by a ghost.
"Alice?" asked the disembodied voice.
"Yes?"
"Alice, are you ready to go?"
John appeared in the threshold of the living room looking expectant. She was relieved but needed more information.
"Let's go. We're meeting Bob and Sarah for dinner, and we're already a little late."
Dinner. She just realized she was starving. She didn't remember eating any food today. Maybe that was why she couldn't read Dan's thesis. Maybe she just needed some food. But the thought of dinner and conversation in a loud restaurant drained her further.
"I don't want to go to dinner. I'm having a hard day."
"I had a hard day, too. Let's go have a nice dinner together."
"You go. I just want to be home."
"Come on, it'll be fun. We didn't go to Eric's party. It'll be good for you to get out, and I know they'd like to see you."
No, they wouldn't. They'll be relieved that I'm not there. I'm a cotton candy pink elephant in the room. I make everyone uncomfortable. I turn dinner into a crazy circus act, everyone juggling their nervous pity and forced smiles with their cocktail glasses, forks, and knives.
"I don't want to go. Tell them I'm sorry, but I wasn't feeling up to it."
Beep, beep.
She saw John hear the noise, too, and she followed him into the kitchen. He popped open the microwave oven door and pulled out a mug.
"This is freezing cold. Do you want me to reheat it?"
She must've made tea that morning, and she'd forgotten to drink it. Then, she must've put it in the microwave to reheat it and left it there.
"No, thanks."
"All right, Bob and Sarah are probably already there waiting. Are you sure you don't want to come?"
"I'm sure."
"I won't stay long."
He kissed her and then left without her. She stood in the kitchen where he left her for a long time, holding the mug of cold tea in her hands.
SHE WAS ON HER WAY to bed, and John still hadn't returned from dinner. The blue computer light glowing in the study caught her attention before she turned to go upstairs. She went in and checked her inbox, more out of habit than out of sincere curiosity.
There they were.
Dear Alice,My name is Mary Johnson. I'm 57 and was diagnosed with FTD five years ago. I live on the North Shore, so not too far from you. This is such a wonderful idea. I'd love to come. My husband, Barry, will drive me. I'm not sure if he'll want to stay. We've both taken an early retirement and we're both home all the time. I think he'd like a break from me. See you soon,MaryHi Alice,I'm Dan Sullivan, 53 years old, diagnosed with EOAD 3 years ago. It runs in my family. My mother, two uncles, and one of my aunts had it, and 4 of my cousins do. So I saw this coming and have been living with it in the family since I was a kid. Funny, didn't make the diagnosis or living with it now any easier. My wife knows where you live. Not far from MGH. Near Harvard. My daughter went to Harvard. I pray every day that she doesn't get this.DanHi Alice,Thank you for your email and invitation. I was diagnosed with EOAD a year ago, like you. It was almost a relief. I thought I was going crazy. I was getting lost in conversations, having trouble finishing my own sentences, forgetting my way home, couldn't understand the checkbook anymore, was making mistakes with the kids' schedules (I have a 15-year-old daughter and a 13-year-old son). I was only 46 when the symptoms started, so of course, no one ever thought it could be Alzheimer's.I think the medications help a lot. I'm on Aricept and Namenda. I have good days and bad. On the good, people and even my family use it as an excuse to think that I'm perfectly fine, even making this up! I'm not that desperate for attention! Then, a bad day hits, and I can't think of words or concentrate and I can't multitask at all. I feel lonely, too. I can't wait to meet you.Cathy RobertsP.S. Do you know about the Dementia Advocacy and Support Network International? Go to their website: www.dasninternational.org. It's a wonderful site for people like us in early stages and with early-onset to talk, vent, get support, and share information. There they were. And they were coming.
MARY, CATHY, AND DAN REMOVED their coats and found seats in the living room. Their spouses kept their coats on, bid them a reluctant good-bye, and left with John for coffee at Jerri's.
Mary had chin-length blond hair and round, chocolate brown eyes behind a pair of dark-rimmed glasses. Cathy had a smart, pleasing face, and eyes that smiled before her mouth did. Alice liked her immediately. Dan had a thick mustache, a balding head, and a stocky build. They could've been professors visiting from out of town, members of a book club, or old friends.
"Would anyone like something to think?" asked Alice.
They stared at her and at one another, disinclined to answer. Were they all too shy or polite to be the first to speak up?
"Alice, did you mean 'drink'?" asked Cathy.
"Yes, what'd I say?"
"You said 'think.'"
Alice's face flushed. Word substitution wasn't the first impression she'd wanted to make.
"I'd actually like a cup of thinks. Mine's been close to empty for days, I could use a refill," said Dan.
They laughed, and it connected them instantly. She brought in the coffee and tea as Mary was telling her story.
"I was a real estate agent for twenty-two years. I suddenly started forgetting appointments, meetings, open houses. I showed up to houses with no keys. I got lost on my way to show a property in a neighborhood I'd known forever with the client in the car with me. I drove around for forty-five minutes when it should've taken less than ten. I can only imagine what she was thinking.
"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.
ANNA SENT LYDIA 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?
If you have trouble answering any of these, go to the file named "Butterfly" on your computer and follow the instructions there immediately. December
Harvard Square
Harvard
April
Three
JANUARY 2005
Mom, 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.
SHE 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.
SHE 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 Christina, 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.
LYDIA 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?"
SHE 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.
John stood in the hallway, ankle-deep in coats.
"What the hell happened in here?" he asked.
"I'm looking for something."
"What?"
She couldn't name it, but she trusted that somewhere in her head, she remembered and knew.
"I'll know when I find it."
"It's a complete disaster in here. It looks like we've been robbed."
She hadn't thought of that. It would explain why she couldn't find it.
"Oh my god, maybe someone stole it."
"We haven't been robbed. You've torn the house apart."
She spotted an untouched basket of magazines next to the couch in the living room. She left John and the theft theory in the hallway, lifted the heavy basket, poured the magazines onto the floor, fanned through them, and then walked away. John followed her.
"Stop it, Alice, you don't even know what you're looking for."
"Yes, I do."
"What then?"
"I can't say."
"What does it look like, what's it used for?"
"I don't know, I told you, I'll know when I find it. I have to find it, or I'll die."
She thought about what she'd just said.
"Where's my medication?"
They walked into the kitchen, kicking through boxes of cereal and cans of soup and tuna. John found her many prescription and vitamin bottles on the floor and the days-of-the-week dispenser in a bowl on the kitchen table.
"Here they are," he said.
The urge, the life-and-death need, didn't dissipate.
"No, that's not it."
"This is insane. You have to stop this. The house is trashed."
Trash.
She opened the compactor, pulled out the plastic bag, and dumped it.
"Alice!"
She ran her fingers through avocado skins, slimy chicken fat, balled tissues and napkins, empty cartons and wrappers, and other trash thingies. She saw the Alice Howland DVD. She held the wet case in her hands and studied it. Huh, I didn't mean to throw this out.
"There it is, that must be it," said John. "I'm glad you found it."
"No, this isn't it."
"All right, please, there's trash all over the floor. Just stop, go sit, and relax. You're frenzied. Maybe if you stop and relax, it'll come to you."
"Okay."
Maybe, if she sat still, she'd remember what it was and where she'd put it. Or maybe, she'd forget she was ever even looking for something.
THE SNOW THAT HAD BEGUN falling the day before and deposited about two feet over much of New England had just stopped. She might not have noticed but for the screeching sound of the wipers swinging back and forth across the newly dry windshield. John turned them off. The streets were plowed, but theirs was the only car on the road. Alice had always liked the serene quiet and stillness that followed a walloping snowstorm, but today it unnerved her.
John drove the car into the Mount Auburn Cemetery lot. A modest space for parking had been shoveled out, but the cemetery itself, the walking paths and gravestones, hadn't yet been uncovered.
"I was afraid it might still be like this. We'll have to come back another day," he said.
"No, wait. Let me just look at it for a minute."
The ancient black trees with their knuckled, varicose branches frosted in white ruled this winter wonderland. She could see a few of what were presumably the gray tops of the very tall, elaborate headstones that belonged to the once wealthy and prominent peaking above the surface of the snow, but that was it. Everything else was buried. Decomposed bodies in coffins buried under dirt and stone, dirt and stone buried under snow. Everything was black and white and frozen and dead.
"John?"
"What?"
She'd said his name too loudly, breaking the silence too suddenly, startling him.
"Nothing. We can go. I don't want to be here."
"WE CAN TRY GOING BACK later in the week if you want," said John.
"Back where?" asked Alice.
"To the cemetery."
"Oh."
She sat at the kitchen table. John poured red wine into two glasses and gave one to her. She swirled the goblet out of habit. She was regularly forgetting the name of her daughter, the actress one, but she could remember how to swirl her wineglass, and that she liked to. Crazy disease. She appreciated the wine's dizzying motion in the glass, its blood red color, its intense flavors of grape, oak, and earth, and the warmth she felt as it landed in her belly.
John stood in front of the opened refrigerator door and removed a block of cheese, a lemon, a spicy liquid thing, and a couple of red vegetables.
"How do chicken enchiladas sound?" he asked.
"Fine."
He opened the freezer and rummaged inside.
"Do we have any chicken?" he asked.
She didn't answer.
"Oh no, Alice."
He turned to show her something in his hands. It wasn't chicken.
"It's your BlackBerry, it was in the freezer."
He pressed its buttons, shook it, and rubbed it.
"It looks like it got water in it, we can see after it's thawed, but I think it's dead," he said.
She burst into ready, heartbroken tears.
"It's okay. If it's dead, we'll get you a new one."
How ridiculous, why am I this upset over a dead electronic organizer? Maybe she was really crying over the deaths of her mother, sister, and father. Maybe she was feeling emotion that she'd anticipated earlier but had been unable to express properly at the cemetery. That made more sense. But that wasn't it. Maybe the death of her organizer symbolized the death of her position at Harvard, and she was mourning the recent loss of her career. That also made sense. But what she felt was an inconsolable grief over the death of the BlackBerry itself.
FEBRUARY 2005
She slumped into the chair next to John, across from Dr. Davis, emotionally weary and intellectually tapped. She'd been taking various neuropsychological tests in that little room with that woman, the woman who administered the neuropsychological tests in the little room, for a torturously long time. The words, the information, the meaning in the woman's questions and in Alice's own answers were like soap bubbles, the kind children blew out of those little plastic wands, on a windy day. They drifted away from her quickly and in dizzying directions, requiring enormous strain and concentration to track. And even if she managed to actually hold a number of them in her sight for some promising duration, it was invariably too soon that pop! they were gone, burst without obvious cause into oblivion, as if they'd never existed. And now it was Dr. Davis's turn with the wand.
"Okay, Alice, can you spell the word water backwards for me?" he asked.
She would have found this question trivial and even insulting six months ago, but today, it was a serious question to be tackled with serious effort. She felt only marginally worried and humiliated by this, not nearly as worried and humiliated as she would've felt six months ago. More and more, she was experiencing a growing distance from her self-awareness. Her sense of Alice--what she knew and understood, what she liked and disliked, how she felt and perceived--was also like a soap bubble, ever higher in the sky and more difficult to identify, with nothing but the thinnest lipid membrane protecting it from popping into thinner air.
Alice spelled water forward first, to herself, extending the five fingers on her left hand, one for each letter, as she did.
"R." She folded down her pinkie. She spelled it forward to herself again, stopping at her ring finger, which she then folded down.
"E." She repeated the same process.
"T." She held her thumb and pointer finger like a gun. She whispered, "A, W," to herself.
"A, W."
She smiled, her left hand raised in a victorious fist, and looked at John. He spun his wedding ring and gave a dispirited smile.
"Good job," said Dr. Davis. He smiled widely and seemed impressed. Alice liked him.
"Now, I'd like you to point to the window after you touch your right cheek with your left hand."
She lifted her left hand to her face. Pop!
"I'm sorry, can you tell me the directions again?" asked Alice, her left hand still poised in front of her face.
"Sure," Dr. Davis obliged knowingly, like a parent who let a child get away with peeking at the top card in a game of cards or inching across the start line before yelling "go." "Point to the window after you touch your right cheek with your left hand."
Her left hand on her right cheek before he finished talking, she jerked her right arm at the window as fast as she could and let out a huge exhale.
"Good, Alice," said Dr. Davis, smiling again.
John offered no praise, no hint of pleasure or pride.
"Okay, now I'd like you to tell me the name and address I asked you to remember earlier."
The name and address. She had a loose sense of it, like the feeling of awakening from a night's sleep and knowing she'd had a dream, maybe even knowing it was about a particular thing, but no matter how hard she thought about it, the details of the dream eluded her. Gone forever.
"It's John Somebody. You know, you ask me this every time, and I've never been able to remember where that guy lives."
"Okay, let's take a guess. Was it John Black, John White, John Jones, or John Smith?"
She had no idea but didn't mind playing along.
"Smith."
"Does he live on East Street, West Street, North Street, or South Street?"
"South Street."
"Was the town Arlington, Cambridge, Brighton, or Brookline?"
"Brookline."
"Okay, Alice, last question, where's my twenty-dollar bill?"
"In your wallet?"
"No, earlier, I hid a twenty-dollar bill somewhere in the room, do you remember where I put it?"
"You did this while I was here?"
"Yes. Any ideas at all come to mind? I'll let you keep it if you find it."
"Well, if I'd known that, I would've been sure to figure out a way to remember it."
"I'm sure you would've. Any idea where it is?"
She saw the focus of his stare deviate to her right, just over her shoulder, for the briefest moment before settling back on her. She twisted around. Behind her, there was a whiteboard on the wall with three words scrawled on it in red marker: Glutamate. LTP. Apoptosis. The red marker lay on a tray at the bottom, right next to a folded twenty-dollar bill. Delighted, she stepped over to the whiteboard and claimed her prize.
Dr. Davis chuckled. "If all my patients were as smart as you, I'd go broke."
"Alice, you can't keep that, you saw him look at it," said John.
"I won it," said Alice.
"It's okay, she found it," said Dr. Davis.
"Should she be like this after only a year and being on medication?" asked John.
"Well, there are probably a few things going on here. Her illness probably started long before she was diagnosed last January. She and you and your family and her colleagues probably disregarded any number of symptoms as fluke, or normal, or chalked them up to stress, not enough sleep, too much to drink, and on and on. This could've gone on easily for a year or two or longer.
"And she's incredibly bright. If the average person has, say for simplicity, ten synapses that lead to a piece of information, Alice could easily have fifty. When the average person loses those ten synapses, that piece of information is inaccessible to them, forgotten. But Alice can lose those ten and still have forty other ways of getting to the target. So her anatomical losses aren't as profoundly and functionally noticeable at first."
"But by now, she's lost a lot more than ten," said John.
"Yes, I'm afraid she has. Her recent memory is now falling in the bottom three percent of those able to complete the tests, her language processing has degraded considerably, and she's losing self-awareness, all as we'd unfortunately expect to see.
"But she's also incredibly resourceful. She used a number of inventive strategies today to answer questions correctly that she couldn't actually remember correctly."
"But there were a lot of questions that she couldn't answer correctly, regardless," said John.
"Yes, that's true."
"It's just getting so much worse, so quickly. Can we up the dosage of either the Aricept or the Namenda?" asked John.
"No, she's at the maximum dosage already for both. Unfortunately, this is a progressive, degenerative disease with no cure. It gets worse, despite any medication we have right now."
"And it's clear she's either getting the placebo or this Amylix drug doesn't work," said John.
Dr. Davis paused as if considering whether to agree or disagree with this.
"I know you're discouraged. But I've often seen unexpected periods of plateau, where it seems to stall, and this can last for some time."
Alice closed her eyes and pictured herself standing solidly in the middle of a plateau. A beautiful mesa. She could see it, and it was worth hoping for. Could John see it? Could he still hope for her, or had he already given up? Or worse, did he actually hope for her rapid decline, so he could take her, vacant and complaisant, to New York in the fall? Would he choose to stand with her on the plateau or push her down the hill?
She folded her arms, unfolded her crossed legs, and planted her feet flat on the floor.
"Alice, are you still running?" asked Dr. Davis.
"No, I stopped a while ago. Between John's schedule and my lack of coordination--I can't seem to see curbs or bumps in the road, and I misjudge distances. I had some terrible falls. Even at home, I keep forgetting about the raised thingy in all the doorways, and I trip into every room I go in. I've got tons of bruises."
"Okay, John, I would either remove the doorway thingies or paint them a contrasting color, something bright, or cover them in brightly colored tape, so Alice can notice them. Otherwise, they just blend into the floor."
"All right."
"Alice, tell me about your support group," said Dr. Davis.
"There are four of us. We meet once a week for a few hours at each other's houses, and we email each other every day. It's wonderful, we talk about everything."
Dr. Davis and that woman in that little room had asked her a lot of probing questions today, questions designed to measure the precise level of destruction inside her head. But no one understood what was still alive inside her head better than Mary, Cathy, and Dan.
"I want to thank you for taking the initiative and filling the obvious gap we have in our support system here. If I get any new early stage or early-onset patients, can I tell them how to get in touch with you?"
"Yes, please do. You should also tell them about DASNI. It's the Dementia Advocacy and Support Network International. It's an online forum for people with dementia. I've met over a dozen people there, from all over the country and Canada and the UK and Australia. Well, I've never actually met them, it's all online, but I feel like I know them and they know me more intimately than many of the people I've known my whole life. We don't waste any time, we don't have enough of it. We talk about the stuff that matters."
John shifted in his seat and jiggled his leg.
"Thank you, Alice, I'll add that website to our standard packet of information. How about you, John? Have you yet talked with our social worker here or gone to any of the caregivers' support group meetings?"
"No, I haven't. I've had coffee a couple of times with the spouses of her support group people, but otherwise, no."
"You might want to consider getting some support yourself. You're not the one with the disease, but you're living with it, too, by living with Alice, and it's hard on the caregivers. I see the toll it takes every day with the family members who come in. There's Denise Daddario, the social worker, here and the MGH Caregivers' Support Group, and I know that the Massachusetts Alzheimer's Association has many local caregiver groups. The resources are there for you, so don't hesitate if you need them."
"All right."
"Speaking of the Alzheimer's Association, Alice, I just received their program for the annual Dementia Care Conference, and I see you're giving the opening plenary presentation," said Dr. Davis.
The Dementia Care Conference was a national meeting for professionals involved in the care of people with dementia and their families. Neurologists, general practice physicians, geriatric physicians, neuropsychologists, nurses, and social workers all gathered in one place to exchange information on approaches to diagnosis, treatment, and patient care. It sounded similar to Alice's support group and DASNI, but bigger and for those without dementia. This year's meeting was to be held next month in Boston.
"Yes," said Alice. "I meant to ask, will you be there?"
"I will, I'll be sure to be in the front row. You know, they've never asked me to give a plenary presentation," said Dr. Davis. "You're a brave and remarkable woman, Alice."
His compliment, genuine and not patronizing, was just the boost her ego needed after having been so ruthlessly pummeled by so many tests today. John spun his ring. He looked at her with tears in his eyes and a clenched smile that confused her.
MARCH 2005
Alice stood at the podium with her typed speech in her hand and looked out at the people seated in the hotel's grand ballroom. She used to be able to eyeball an audience and guess with an almost psychic accuracy the number of people in attendance. It was a skill she no longer possessed. There were a lot of people. The organizer, whatever her name was, had told her that over seven hundred people were registered for the conference. Alice had given many talks to audiences that size and larger. The people in her audiences past had included distinguished Ivy League faculty, Nobel Prize winners, and the world's thought leaders in psychology and language.
Today, John sat in the front row. He kept looking back over his shoulder as he repeatedly wrung his program into a tight tube. She hadn't noticed until just now that he was wearing his lucky gray T-shirt. He usually reserved it for only his most critical lab result days. She smiled at his superstitious gesture.
Anna, Charlie, and Tom sat next to him, talking to one another. A few seats down sat Mary, Cathy, and Dan with their husbands and wife. Positioned front and center, Dr. Davis sat ready with his pen and notebook. Beyond them sat a sea of health professionals dedicated to the care of people with dementia. This might not be her biggest or most prestigious audience, but of all the talks she'd given in her life, she hoped this one would have the most powerful impact.
She ran her fingers back and forth across the smooth, gemmed wings of her butterfly necklace, which sat, as if perched, on the knobby tip of her sternum. She cleared her throat. She took a sip of water. She touched the butterfly wings one more time, for luck. Today's a special occasion, Mom.
"Good morning. My name is Dr. Alice Howland. I'm not a neurologist or general practice physician, however. My doctorate is in psychology. I was a professor at Harvard University for twenty-five years. I taught courses in cognitive psychology, I did research in the field of linguistics, and I lectured all over the world.
"I am not here today, however, to talk to you as an expert in psychology or language. I'm here today to talk to you as an expert in Alzheimer's disease. I don't treat patients, run clinical trials, study mutations in DNA, or counsel patients and their families. I am an expert in this subject because, just over a year ago, I was diagnosed with early-onset Alzheimer's disease.
"I'm honored to have this opportunity to talk with you today, to hopefully lend some insight into what it's like to live with dementia. Soon, although I'll still know what it is like, I'll be unable to express it to you. And too soon after that, I'll no longer even know I have dementia. So what I have to say today is timely.
"We, in the early stages of Alzheimer's, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It's a very lonely and frustrating place to be.
"I no longer work at Harvard. I no longer read and write research articles or books. My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can't confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short-term memory is hanging on by a couple of frayed threads.
"I'm losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I'd be hard-pressed to give you details. I might guess a few things correctly. I'm an excellent guesser. But I don't really know. I don't remember yesterday or the yesterday before that.
"And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can't offer it the names of the United States presidents in exchange for the names of my children. I can't give it the names of the state capitals and keep the memories of my husband.
"I often fear tomorrow. What if I wake up and don't know who my husband is? What if I don't know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that's responsible for my unique 'meness' vulnerable to this disease? Or is my identity something that transcends neurons, proteins, and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimer's? I believe it is.
"Being diagnosed with Alzheimer's is like being branded with a scarlet A. This is now who I am, someone with dementia. This was how I would, for a time, define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that.
"I am a wife, mother, and friend, and soon to be grandmother. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia. Through an early-stage support group, through the Dementia Advocacy and Support Network International, by talking to you today, I am helping others with dementia live better with dementia. I am not someone dying. I am someone living with Alzheimer's. I want to do that as well as I possibly can.
"I'd like to encourage earlier diagnosis, for physicians not to assume that people in their forties and fifties experiencing memory and cognition problems are depressed or stressed or menopausal. The earlier we are properly diagnosed, the earlier we can go on medication, with the hope of delaying progression and maintaining a footing on a plateau long enough to reap the benefits of a better treatment or cure soon. I still have hope for a cure, for me, for my friends with dementia, for my daughter who carries the same mutated gene. I may never be able to retrieve what I've already lost, but I can sustain what I have. I still have a lot.
"Please don't look at our scarlet A's and write us off. Look us in the eye, talk directly to us. Don't panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.
"I encourage you to empower us, not limit us. If someone has a spinal cord injury, if someone has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses. Work with us. Help us develop tools to function around our losses in memory, language, and cognition. Encourage involvement in support groups. We can help each other, both people with dementia and their caregivers, navigate through this Dr. Seuss land of neither here nor there.
"My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I'll forget that I stood before you and gave this speech. But just because I'll forget it some tomorrow doesn't mean that I didn't live every second of it today. I will forget today, but that doesn't mean that today didn't matter.
"I'm no longer asked to lecture about language at universities and psychology conferences all over the world. But here I am before you today, giving what I hope is the most influential talk of my life. And I have Alzheimer's disease.
"Thank you."
She looked up from her speech for the first time since she began talking. She hadn't dared to break eye contact with the words on the pages until she finished, for fear of losing her place. To her genuine surprise, the entire ballroom was standing, clapping. It was more than she had hoped for. She'd hoped for two simple things--not to lose the ability to read during the talk and to get through it without making a fool of herself.
She looked at the familiar faces in the front row and knew without a doubt that she had far exceeded those modest expectations. Cathy, Dan, and Dr. Davis beamed. Mary was dabbing her eyes with a handful of pink tissues. Anna clapped and smiled without once stopping to wipe the tears that streamed down her face. Tom clapped and cheered and looked like he could barely keep himself from running up to hug and congratulate her. She couldn't wait to hug him, too.
John stood tall and unabashed in his lucky gray T-shirt, with an unmistakable love in his eyes and joy in his smile as he applauded her.
APRIL 2005
The energy required to write her speech, to deliver it well, and to shake hands and converse articulately with what seemed like hundreds of enthusiastic attendees at the Dementia Care Conference would have been enormous for someone without Alzheimer's disease. For someone with Alzheimer's, it was beyond enormous. She managed to function for some time afterward on the adrenaline high, the memory of the applause, and a renewed confidence in her inner status. She was Alice Howland, brave and remarkable hero.
But the high wasn't sustainable, and the memory faded. She lost a little of her confidence and status when she brushed her teeth with moisturizer. She lost a bit more when she tried all morning to call John with the television remote control. She lost the last of it when her own unpleasant body odor informed her that she hadn't bathed in days, but she couldn't muster up the courage or knowledge she needed to step into the tub. She was Alice Howland, Alzheimer's victim.
Her energy depleted with no reserve to draw upon, her euphoria waned, and the memory of her victory and confidence stolen, she suffered under an overwhelming, exhausting heaviness. She slept late and stayed in bed hours after waking. She sat on her couch and cried without specific reason. No amount of sleep or crying replenished her.
John woke her from a dead sleep and dressed her. She let him. He didn't tell her to brush her hair or teeth. She didn't care. He hurried her into the car. She leaned her forehead against the cold window. The world outside looked bluish gray. She didn't know where they were going. She felt too indifferent to ask.
John pulled into a parking garage. They got out and entered a building through a door in the garage. The white fluorescent lighting hurt her eyes. The wide hallways, the elevators, the signs on the walls: RADIOLOGY, SURGERY, OBSTETRICS, NEUROLOGY. Neurology.
They entered a room. Instead of the waiting room she expected to see, she saw a woman sleeping in a bed. She had swollen, closed eyes, and IV tubing taped to her hand.
"What's wrong with her?" whispered Alice.
"Nothing, she's just tired," said John.
"She looks terrible."
"Shh, you don't want her to hear that."
The room didn't look like a hospital room. It contained another bed, smaller and unmade, next to the one the woman was sleeping in, a large television in the corner, a lovely vase of yellow and pink flowers on a table, and hardwood floors. Maybe this wasn't a hospital. It could be a hotel. But then, why would the woman have that tube in her hand?
An attractive young man came in with a tray of coffee. Maybe he's her doctor. He wore a Red Sox hat, jeans, and a Yale T-shirt. Maybe he's room service.
"Congratulations," whispered John.
"Thanks. You just missed Tom. He'll be back this afternoon. Here, I got everyone coffee and a tea for Alice. I'll go get the babies."
The young man knew her name.
The young man returned rolling a cart carrying two clear plastic, rectangular tubs. Each tub contained a tiny baby, their bodies entirely swaddled in white blankets and the tops of their heads covered in white hats, so that only their faces showed.
"I'm going to wake her. She wouldn't want to sleep through you meeting them," said the young man. "Honey, wake up, we have visitors."
The woman woke up reluctantly, but when she saw Alice and John, an excitement entered her tired eyes and enlivened her. She smiled, and her face seemed to snap into place. Oh my, that's Anna!
"Congratulations, baby," said John. "They're beautiful," and he leaned down over her and kissed her forehead.
"Thanks, Dad."
"You look great. How are you feeling, okay?" asked John.
"Thanks, I'm okay, just exhausted. Ready, here they are. This is Allison Anne, and this little guy is Charles Thomas."
The young man handed one of the babies to John. He lifted the other baby, the one with a pink ribbon tied to its hat, and presented it to Alice.
"Would you like to hold her?" asked the young man.
Alice nodded.
She held the tiny, sleeping baby, her head in the crook of her elbow, her bum in her hand, her body up against her chest, her ear against her heart. The tiny, sleeping baby breathed tiny, shallow breaths through tiny, round nostrils. Alice instinctively kissed her blotchy pink, pudgy cheek.
"Anna, you had your babies," said Alice.
"Yes, Mom, you're holding your granddaughter, Allison Anne," said Anna.
"She's perfect. I love her."
My granddaughter. She looked at the baby with the blue ribbon in John's arms. My grandson.
"And they won't get Alzheimer's like I did?" asked Alice.
"No, Mom, they won't."
Alice inhaled deeply, breathing in the scrumptious smell of her beautiful granddaughter, filling herself with a sense of relief and peace she hadn't known in a long time.
"MOM, I GOT INTO NYU and Brandeis University."
"Oh, that's so exciting. I remember getting into school. What are you going to study?" asked Alice.
"Theater."
"That's wonderful. I used to go to Harvard. I loved it there. What school did you say you're going to?"
"I don't know yet. I got into NYU and Brandeis."
"Which one do you want to go to?"
"I'm not sure. I talked to Dad, and he really wants me to go to NYU."
"Do you want to go to NYU?"
"I don't know. It has the better reputation, but I like Brandeis better for me. I'd be near Anna and Charlie and the babies, and Tom, and you and Dad, if you stay."
"If I stay where?" asked Alice.
"Here, in Cambridge."
"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."