JANUARY 2004
She had good reasons to cancel her appointments on the morning of January nineteenth with the neuropsychologist and Dr. Davis. Harvard’s exam week for the fall semester fell in January, after the students returned from Winter Break, and the final exam for Alice’s cognition class was scheduled for that morning. Her attendance wasn’t crucial, but she liked the sense of closure that being there provided, of seeing her students through the course from start to finish. With some reluctance, she arranged for a teaching fellow to proctor the exam. The bigger good reason was that her mother and sister had died on January nineteenth, thirty-two years ago. She didn’t consider herself superstitious like John, but she’d never received good news on that day. She’d asked the receptionist for another date, but it was either then or four weeks from then. So she took it, and she didn’t cancel. The idea of waiting another month was that unappealing.
She imagined her students back at Harvard, nervous about what questions they would be asked, hurrying a semester’s worth of knowledge onto the pages of their blue exam books, hoping their heavily crammed short-term memories wouldn’t fail them. She understood exactly how they felt. Most of the neuropsychological tests administered to her that morning—Stroop, Raven’s Colored Progressive Matrices, Luria Mental Rotation, Boston Naming, WAIS-R Picture Arrangement, Benton Visual Retention, NYU Story Recall—were familiar to her. They were designed to tease out any subtle weakness in the integrity of language fluency, recent memory, and reasoning processes. She had, in fact, taken many of them before, serving as a negative control in the cognition studies of various graduate students. But today, she wasn’t a control. She was the subject being tested.
The copying, recalling, arranging, and naming took almost two hours to complete. Like the students she imagined, she felt relieved to be done and fairly confident in her performance. Escorted by the neuropsychologist, Alice entered Dr. Davis’s office and sat in one of the two chairs arranged side by side, facing him. He acknowledged the empty chair next to her with a disappointed sigh. Even before he spoke, she knew she was in trouble.
“Alice, didn’t we talk about you coming here with someone last time?”
“We did.”
“Okay, it’s a requirement of this unit that every patient comes in with someone who knows them. I won’t be able to treat you properly unless I have an accurate picture of what’s going on, and I can’t be sure I have that information without this person present. Next time, Alice, no excuses. Do you agree to this?”
“Yes.”
Next time. Any solid relief and confidence generated from her self-evaluated competence in the neuropsychological exams evaporated.
“I have the results of all of your tests now, so we can go over everything. I don’t see anything abnormal in your MRI. No cerebral vascular disease, no evidence of any small, silent strokes, no hydrocephalus or masses. Everything there looks fine. And your blood work and lumbar puncture all came back negative as well. I was as aggressive here as we can be and looked for every condition that could sensibly account for the kinds of symptoms you’re experiencing. So we know you don’t have HIV, cancer, a vitamin deficiency, mitochondrial disease, or a number of other rare conditions.”
His speech was well constructed, obviously not his first delivery of its kind. The “what she did have” would come at the end. She nodded, letting him know that she followed him and that he should continue.
“You scored in the ninety-ninth percentile in your ability to attend, in things like abstract reasoning, spatial skills, and language fluency. But unfortunately, here’s what I do see. You have a recent memory impairment that is out of proportion to your age and is a significant decline in your previous level of functioning. I know this from your own account of the problems you’ve been having and from your description of the degree to which they’ve been interfering with your professional life. I also personally witnessed it when you couldn’t retrieve the address I’d asked you to remember the last time you were here. And although you were perfect in most of the cognitive domains today, you showed a lot of variability in two of the tasks that were related to recent memory. In fact, you were down to the sixtieth percentile in one.
“When I put all of this information together, Alice, what it tells me is that you fit the criteria of having probable Alzheimer’s disease.”
Alzheimer’s disease.
The words knocked the wind out of her. What exactly did he just tell her? She repeated his words in her head. Probable. It gave her the will to inhale, the ability to speak.
“So ‘probable’ means that I might not fit the criteria.”
“No, we use the word ‘probable’ because the only definitive diagnosis for Alzheimer’s right now is by examining the histology of the brain tissue, which requires either an autopsy or a biopsy, neither of which is a good option for you. It’s a clinical diagnosis. There’s no dementia protein in your blood that can tell us you have it, and we wouldn’t expect to see any brain atrophy on an MRI until much later stages in the disease.”
Brain atrophy.
“But this can’t be possible, I’m only fifty.”
“You have early-onset Alzheimer’s. You’re right, we typically think of Alzheimer’s as a disease that affects the elderly, but ten percent of people with Alzheimer’s have this early-onset form and are under the age of sixty-five.”
“How is that different from the older form?”
“It’s not, except that its cause usually has a strong genetic linkage, and it manifests much earlier.”
Strong genetic linkage. Anna, Tom, Lydia.
“But if you only know for sure what I don’t have, how can you say with any certainty that this is Alzheimer’s?”
“After listening to you describe what’s been happening and to your medical history, after testing your orientation, registration, attention, language, and recall, I was ninety-five percent sure. With no other explanation turning up in your neurological exam, blood, cerebral spinal fluid, or MRI, the other five percent goes away. I’m sure, Alice.”
Alice.
The sound of her name penetrated her every cell and seemed to scatter her molecules beyond the boundaries of her own skin. She watched herself from the far corner of the room.
“So what does this mean?” she heard herself ask.
“We have a couple of drugs for treating Alzheimer’s now that I want to put you on. The first is Aricept. It boosts cholinergic functioning. The second is Namenda. It was just approved this fall and has shown a lot of promise. Neither of these is a cure, but they can slow the progression of symptoms, and we want to buy you as much time as possible.”
Time. How much time?
“I also want you to take vitamin E twice a day and vitamin C, baby aspirin, and a statin once a day. You don’t show any clear risk factors for cardiovascular disease, but anything that’s good for the heart is going to be good for the brain, and we want to preserve every neuron and synapse we can.”
He wrote this information down on a prescription pad.
“Alice, does anyone in your family know that you’re here?”
“No,” she heard herself say.
“Okay, you’re going to have to tell someone. We can slow the rate of cognitive decline that you’ve been experiencing, but we can’t stop it or reverse it. It’s important to your safety that someone who sees you regularly knows what’s going on. Will you tell your husband?”
She saw herself nod.
“Okay, good. Then fill these prescriptions, take everything as directed, call me if you have any problems with side effects, and make an appointment to come back in six months. Between now and then, you can call or email me if you have any questions, and I would also encourage you to contact Denise Daddario. She’s the social worker here and can help you with resources and support. I’ll see you and your husband together then in six months, and we’ll look at how you’re doing.”
She searched his intelligent eyes for something else. She waited. She became strangely aware of her hands clenching the cold metal arms of the chair she sat in. Her hands. She hadn’t become an ethereal collection of molecules hovering in the corner of the room. She, Alice Howland, was sitting on a cold, hard chair next to an empty chair in a neurologist’s office in the Memory Disorders Unit on the eighth floor of Massachusetts General Hospital. And she’d just been diagnosed with Alzheimer’s disease. She searched her doctor’s eyes for something else, but could find only truth and regret.
January nineteenth. Nothing good ever happened on that day.
IN HER OFFICE WITH THE door shut, she read through the Activities of Daily Living questionnaire that Dr. Davis had told her to give to John. This should be filled out by an informant, NOT the patient was typed in bold at the top of the first page. The word informant, the closed door, and her pounding heart all contributed to a feeling of conspicuous guilt, like she was hiding in some Eastern European city, in possession of illegal documents, and the police were on their way, sirens blaring.
The rating scale for each activity ranged from 0 (no problems, same as always) to 3 (severely impaired, totally dependent on others). She scanned down the descriptions next to the 3s and assumed they represented the end stages of this disease, the end of this straight and short road that she’d been suddenly forced onto in a car with no brakes and no steering.
Number 3 was a humiliating list: Must be fed most foods. Has no control over bowel or bladder. Must be given medication by others. Resists efforts of caretaker to clean or groom. No longer works. Home or hospital bound. No longer handles money. No longer goes out unaccompanied. Humiliating, but her analytical mind became instantly skeptical of the actual relevance of this list to her individual outcome. How much of this list was due to the progression of Alzheimer’s disease and how much was confounded by the overwhelmingly elderly population it described? Were the eighty-year-olds incontinent because they had Alzheimer’s or because they had eighty-year-old bladders? Perhaps these 3s wouldn’t apply to someone like her, someone so young and physically fit.
The worst of it came under the heading “Communications.” Speech is almost unintelligible. Does not understand what people are saying. Has given up reading. Never writes. No more language. Other than misdiagnosis, she couldn’t formulate a hypothesis that would render her immune to this list of 3s. It could all apply to someone like her. Someone with Alzheimer’s.
She looked at the rows of books and periodicals on her bookcase, the stack of final exams to be corrected on her desk, the emails in her inbox, the red, flashing voice-mail light on her phone. She thought about the books she’d always wanted to read, the ones adorning the top shelf in her bedroom, the ones she figured she’d have time for later. Moby-Dick. She had experiments to perform, papers to write, and lectures to give and attend. Everything she did and loved, everything she was, required language.
The last pages of the questionnaire asked the informant to rate the severity of the following symptoms experienced by the patient in the past month: delusions, hallucinations, agitation, depression, anxiety, euphoria, apathy, disinhibition, irritability, repetitive motor disturbances, sleep disruptions, changes in eating. She felt tempted to fill in the answers herself, to demonstrate that she was actually perfectly fine and that Dr. Davis must be wrong. Then she remembered his words: You may not be the most reliable source of what’s been going on. Maybe, but then she still remembered he’d said that. She wondered when the time would come that she wouldn’t.
Her knowledge of Alzheimer’s disease admittedly swept the surface only lightly. She knew that the brains of Alzheimer’s patients had reduced levels of acetylcholine, a neurotransmitter important in learning and memory. She also knew that the hippocampus, a sea-horse-shaped structure in the brain critical for the formation of new memories, became mired in plaques and tangles, although she didn’t really understand what plaques and tangles were exactly. She knew that anomia, a pathological tip of the tongue, was another hallmark symptom. And she knew that someday, she’d look at her husband, her children, her colleagues, faces she’d known and loved forever, and she wouldn’t recognize them.
And she knew there was more. There were layers of disturbing filth to uncover. She typed the words “Alzheimer’s disease” into Google. Her middle finger was poised over the return key when two jolting knocks caused her to abort the mission with the speed of an involuntary reflex and hide the evidence. Without further warning or waiting for an answer, the door opened.
She feared her face read stunned, anxious, devious.
“Are you ready?” asked John.
No, she wasn’t. If she confessed to John what Dr. Davis had told her, if she gave him the Activities of Daily Living questionnaire, it would all become real. John would become the informant, and Alice would become the dying, incompetent patient. She wasn’t ready to turn herself in. Not yet.
“Come on, the gates close in an hour,” said John.
“Okay,” said Alice. “I’m ready.”
FOUNDED IN 1831 AS AMERICA’S first nonsectarian garden cemetery, Mount Auburn was now a National Historic Landmark, a world-renowned arboretum and horticultural landscape, and the final resting place for Alice’s sister, mother, and father.
This was the first time that her father would be present on the anniversary of that fateful car accident, dead or otherwise, and it irritated her. This had always been a private visit between her and her mother and sister. Now, he would be there, too. He didn’t deserve to be.
They walked down Yew Avenue, an older section of the cemetery. Her eyes and pace lingered as they passed the familiar headstones of the Shelton family. Charles and Elizabeth had buried all three of their children—Susie, just a baby, maybe a stillbirth, in 1866; Walter, age two, in 1868; and Carolyn, age five, in 1874. Alice dared to imagine Elizabeth’s grief by superimposing her own children’s names on the gravestones. She could never hold the macabre images for long—Anna blue and silent at birth; Tom dead, probably following an illness, in his yellow feetie pajamas; and Lydia, rigid and lifeless after a day of coloring in kindergarten. The circuits of her imagination always rejected this sort of gruesome specificity, and all three of her children animated quickly back to the way they were.
Elizabeth was thirty-eight when her last child died. Alice wondered whether she tried to have more children but could no longer conceive, or whether she and Charles started sleeping in separate beds, too scarred to risk the purchase of another tiny headstone. She wondered whether Elizabeth, who lived twenty years longer than Charles, ever found comfort or peace in her life.
They continued in silence to her family’s plot. Their gravestones were simple, like granite Brobdingnagian shoe boxes, and stood in a discrete row under the branches of a purple-leaf beech tree. Anne Lydia Daly, 1955–1972; Sarah Louise Daly, 1931–1972; Peter Lucas Daly, 1932–2003. The low-branched beech tree towered at least one hundred feet above them and wore beautiful, glossy deep purplish green leaves in the spring, summer, and fall. But now, in January, its leafless, black branches cast long, distorted shadows on her family’s graves, and it looked perfectly creepy. Any horror movie director would love that tree in January.
John held her gloved hand as they stood under the tree. Neither of them spoke. In the warmer months, they’d hear the sounds of birds, sprinklers, grounds crew vehicles, and music from car radios. Today, the cemetery was silent but for the distant tide of traffic beyond the gates.
What did John think about while they stood there? She never asked him. He had never met her mother or sister, so he’d be hard-pressed to entertain thoughts of them for very long. Did he think about his own mortality or spirituality? About hers? Did he think about his parents and sisters, who were all still alive? Or was he in a different place entirely, going over the details of his research or classes or fantasizing about dinner?
How could she possibly have Alzheimer’s disease? Strong genetic linkage. Would her mother have developed this if she had lived to be fifty? Or was it her father?
When he was younger, he drank obscene volumes of alcohol without ever appearing overtly drunk. He grew increasingly quiet and introverted but always retained enough communication skills to order the next whiskey or to insist that he was okay to drive. Like the night he drove the Buick off Route 93 and into a tree, killing his wife and younger daughter.
His drinking habits never changed, but his demeanor did, probably about fifteen years ago. The nonsensical, belligerent rants, a disgusting lack of hygiene, not knowing who she was—Alice had assumed it was the liquor, finally taking its toll on his pickled liver and marinated mind. Was it possible that he had been living with Alzheimer’s disease and was never diagnosed? She didn’t need an autopsy. It fit too precisely not to be true, and it provided her with the ideal target to throw her blame.
Well, Dad, are you happy? I’ve got your lousy DNA. You’re going to get to kill us all. How does it feel to murder your entire family?
Her crying, explosive and anguished, would have seemed appropriate to any stranger observing the scene—her dead parents and sister buried in the ground, the darkening graveyard, the eerie beech tree. To John, it must’ve come completely unexpected. She hadn’t shed a single tear over her father’s death last February, and the sorrow and loss she felt for her mother and sister had long been tempered by time.
He held her without coaxing her to stop and without hinting that he’d do anything but hold her for as long as she cried. She realized the cemetery was closing any minute. She realized she was probably worrying John. She realized no amount of crying would cleanse her contaminated brain. She pressed her face harder into his wool peacoat and cried until she was exhausted.
He held her head in his hands and kissed the wet outside corner of each of her eyes.
“Ali, are you okay?”
I’m not okay, John. I have Alzheimer’s disease.
She almost thought she’d said the words aloud, but she hadn’t. They remained trapped in her head, but not because they were barricaded by plaques and tangles. She just couldn’t say them aloud.
She pictured her own name on a matching headstone next to Anne’s. She’d rather die than lose her mind. She looked up at John, his eyes patient, waiting for an answer. How could she tell him she had Alzheimer’s disease? He loved her mind. How could he love her with this? She looked back at Anne’s name carved in stone.
“I’m just having a really bad day.”
She’d rather die than tell him.
SHE WANTED TO KILL HERSELF. Impulsive thoughts of suicide came at her with speed and brawn, outmaneuvering and muscling out all other ideas, trapping her in a dark and desperate corner for days. But they lacked stamina and withered into a flimsy flirtation. She didn’t want to die yet. She was still a well-respected professor of psychology at Harvard University. She could still read and write and use the bathroom properly. She had time. And she had to tell John.
She sat on the couch with a gray blanket on her lap, hugging her knees, feeling like she might throw up. He sat on the edge of the wing chair opposite her, his body utterly still.
“Who told you this?” asked John.
“Dr. Davis, he’s a neurologist at Mass General.”
“A neurologist. When?”
“Ten days ago.”
He turned his head and spun his wedding band while he seemed to examine the paint on the wall. She held her breath as she waited for him to look at her again. Maybe he’d never look at her the same way. Maybe she’d never breathe again. She hugged herself a little tighter.
“He’s wrong, Ali.”
“He’s not.”
“There’s nothing wrong with you.”
“Yes, there is. I’ve been forgetting things.”
“Everyone forgets things. I can never remember where I put my glasses. Should this doctor diagnose me with Alzheimer’s, too?”
“The kinds of problems I’ve been having aren’t normal. It’s not just misplacing glasses.”
“All right, so you’ve been forgetting things, but you’re menopausal, you’re stressed, and your father’s death probably brought back all sorts of feelings around losing your mom and Anne. You’re probably depressed.”
“I’m not depressed.”
“How do you know? Are you a clinician? You should see your own doctor, not this neurologist.”
“I did.”
“Tell me exactly what she said.”
“She didn’t think it was depression or menopause. She didn’t really have an explanation. She thought I might not be getting enough sleep. She wanted to wait and see me in a couple of months.”
“See, you’re just not taking care of yourself.”
“She’s not a neurologist, John. I get plenty of sleep. And that was in November. It’s been a couple of months, and it’s not getting any better. It’s getting worse.”
She was asking him to believe in a single conversation what she had denied for months. She started with an example he already knew.
“Remember I didn’t go to Chicago?”
“That could happen to me or anyone we know. We have insane schedules.”
“We’ve always had insane schedules, but I’ve never forgotten to get on a plane. It’s not like I just missed my flight, I completely forgot about the conference altogether, and I’d been preparing for it all day.”
He waited. There were giant secrets he didn’t know about.
“I forget words. I completely forgot the topic of the lecture I was supposed to give in the time it took to walk from my office to class, I can’t decipher the intention behind words I write in the morning on my to-do list by the middle of the afternoon.”
She could read his unconvinced mind. Overtired, stress, anxiety. Normal, normal, normal.
“I didn’t make the pudding on Christmas Eve because I couldn’t. I couldn’t remember a single step of the recipe. It was just gone, and I’ve made that dessert from memory every year since I was a kid.”
She presented a surprisingly solid case against herself. A jury of her peers might’ve heard enough. But John loved her.
“I was standing in front of Nini’s in Harvard Square and had absolutely no idea how to get home. I couldn’t figure out where I was.”
“When was this?”
“September.”
She broke his silence, but not his determination to defend the integrity of her mental health.
“That’s only some of it. I’m terrified to think about what I’m forgetting that I’m not even aware of.”
His expression shifted, as if he identified something potentially meaningful in the Rorschach-like smudges on one of his RNA films.
“Dan’s wife.” He said it more to himself than to her.
“What?” she asked.
Something cracked. She saw it. The possibility of it seeped in, diluting his conviction.
“I need to do some reading, and then I want to talk to your neurologist.”
Without looking at her, he got up and went straight into the study, leaving her alone on the couch, hugging her knees, feeling like she needed to throw up.