Still Alice (8 page)

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, go
ing 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 hint
ing 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.

S
HE 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.

Friday:

Take your morning medications

Department meeting, 9:00, room 545

Return emails

Teach Motivation & Emotion Class, 1:00, Science Center,

Auditorium B (“Homeostasis and Drives” lecture)

Genetic counselor appointment (John has info)

Take your evening medications

Stephanie Aaron was the genetic counselor affiliated with Mass General Hospital’s Memory Disorders Unit. She had shoulder-length black hair and arched eyebrows that suggested a curious openness. She greeted them with a warm smile.

“So, tell me why you’re here today,” Stephanie said.

“My wife was recently told she has Alzheimer’s disease, and we want her screened for the APP, PS1, and PS2 mutations.”

John had done his homework. He’d spent the last several weeks buried in literature on the molecular etiology of Alzheimer’s. Errant proteins born from any of these three mutated genes were the known villains for the early-onset cases.

“Alice, tell me, what are you hoping to learn from the testing?” Stephanie asked.

“Well, it seems like a reasonable way to try to confirm my diagnosis. Certainly more so than a brain biopsy or an autopsy.”

“Are you concerned that your diagnosis might be inaccurate?”

“We think it’s a real possibility,” said John.

“Okay, first, let’s walk through what a positive versus a negative mutation screen would mean for you. These mutations are fully penetrant. If you’re mutation positive for APP, PS1, or PS2, I would say that’s a solid confirmation of your diagnosis. Things get a bit tricky, though, if your results come back negative. We can’t really interpret with any certainty what that would mean. About fifty percent of people with early-onset Alzheimer’s don’t show a mutation in any of these three genes. This isn’t to say that they don’t actually have Alzheimer’s or that their disease isn’t genetically based, it’s just that we don’t yet know the gene in which their mutation resides.”

“Isn’t that number more like ten percent for someone her age?” asked John.

“The numbers are a bit more skewed for someone her age, that’s true. But if Alice’s screen comes back negative, we unfortunately can’t say for sure that she doesn’t have the disease.
She may just happen to fall in the smaller percent of people that age with Alzheimer’s who have a mutation in a gene not yet identified.”

It was just as plausible, if not more so when coupled with Dr. Davis’s medical opinion. Alice knew that John understood this, but his interpretation fit the null hypothesis of “Alice does not have Alzheimer’s disease, our lives aren’t ruined,” whereas Stephanie’s did not.

“Alice, does this all make sense to you?” Stephanie asked.

Although the context made the question legitimate, Alice resented it and glimpsed the subtext of conversations in her future. Was she competent enough to understand what was being said? Was she too brain-damaged and confused to consent to this? She’d always been addressed with great respect. If her mental prowess became increasingly replaced with mental illness, what would replace that great respect? Pity? Condescension? Embarrassment?

“Yes,” said Alice.

“I also want to make it clear that if your screening comes back with a positive mutation, a genetic diagnosis isn’t going to change anything about your treatment or prognosis.”

“I understand.”

“Good. Let’s get some information on your family, then. Alice, are your parents living?”

“No. My mother died in a car accident when she was forty-one, and my father died last year at seventy-one of liver failure.”

“How were their memories while they were alive? Did either of them show signs of dementia or personality changes?”

“My mother was perfectly fine. My father was a lifelong alcoholic. He’d always been a calm man, but he got extremely
volatile as he got older, and it became impossible to have a coherent conversation with him. I don’t think he recognized me at all for the last several years.”

“Was he ever brought in to see a neurologist?”

“No. I’d assumed it was the drinking.”

“When would you say these changes began?”

“Around his early fifties.”

“He was blind drunk, every day. He died of cirrhosis, not Alzheimer’s,” said John.

Alice and Stephanie paused and silently agreed to let him think what he wanted and move on.

“Do you have any brothers or sisters?”

“My only sister died in that car accident with my mother when she was sixteen. I don’t have any brothers.”

“How about aunts, uncles, cousins, grandparents?”

Alice relayed her incomplete knowledge of the health and death histories of her grandparents and other relatives.

“Okay, if you don’t have any other questions, a nurse is going to come in and draw a sample of blood. We’ll send it off to be sequenced and should have the results within a couple of weeks.”

Alice stared out the window as they drove down Storrow Drive. It was frigid outside, already dark at 5:30, and she didn’t see anyone braving the elements along the edges of the Charles. No signs of life. John had the stereo turned off. There was nothing to distract her from thoughts of damaged DNA and necrotic brain tissue.

“It’s going to be negative, Ali.”

“But that wouldn’t change anything. It wouldn’t mean I don’t have it.”

“Not technically, but it creates a whole lot more room for thinking this is something else.”

“Like what? You talked to Dr. Davis. He already tested me for every cause of dementia you could come up with.”

“Look, I think you jumped the gun going to see a neurologist. He looks at your set of symptoms and sees Alzheimer’s, but that’s what he’s trained to see, it doesn’t mean he’s right. Remember when you hurt your knee last year? If you’d gone to see an orthopedic surgeon, he would’ve seen a torn ligament or worn cartilage, and he would’ve wanted to cut you open. He’s a surgeon, so he sees surgery as the solution. But you just stopped running for a couple of weeks, you rested it, took ibuprofen, and you were fine.

“I think you’re exhausted and stressed, I think the hormonal changes from menopause are wreaking havoc on your physiology, and I think you’re depressed. We can handle all of these, Ali, we just have to address each one.”

He sounded right. It wasn’t likely that someone her age would have Alzheimer’s disease. She was menopausal, and she was exhausted. And maybe she was depressed. That would explain why she didn’t push back on her diagnosis harder, why she didn’t fight to the teeth against even the suggestion of this doomed fate. It certainly wasn’t characteristic of her. Maybe she was stressed, tired, menopausal, and depressed. Maybe she didn’t have Alzheimer’s disease.

Thursday:

7:00, Take your morning medications

Complete Psychonomic review

11:00, meeting with Dan, my office

12:00, Lunch Seminar, room 700