“Okay, two coffees and two scones,” said Jess.
Outside, Alice took a sip. It tasted acrid and unpleasant and poorly reflected its delicious smell.
“So how’s your coffee?” asked John.
“Wonderful.”
As they walked to campus, Alice drank the coffee she hated to spite him. She couldn’t wait to be alone in her office, where she could throw away what was left of the wretched beverage. Plus, she desperately wanted to empty the gravel out of her boot.
BOOTS OFF AND COFFEE IN the trash, she tackled her inbox first. She opened an email from Anna.
Hi Mom,
We’d love to go to dinner, but this week is kind of tough with Charlie’s trial. How about next week? What days are good for you and Dad? We’re free any night but Thursday and Friday.
Anna
She stared down the tauntingly ready, blinking cursor on her computer screen and tried to imagine the words she wanted to use in her reply. The conversion of her thoughts to voice, pen, or computer keys often required conscious effort and calm coaxing. And she held little confidence in the spelling of words she’d long ago been rewarded for her mastery of with gold stars and teachers’ praise.
The phone rang.
“Hi, Mom.”
“Oh good, I was just about to return your email.”
“I didn’t send you an email.”
Unsure of herself, Alice reread the message on her screen.
“I just read it. Charlie has a trial this week—”
“Mom, this is Lydia.”
“Oh, what are you doing up so early?”
“I’m always up now. I wanted to call you and Dad last night, but it was too late your time. I just got an incredible part in a play called The Memory of Water. It’s with this phenomenal director, and it’s going up for six shows in May. I think it’s going to be really good, and with this director it should get a lot of attention. I was hoping maybe you and Dad could come out to see me in it?”
Cued by the hanging rise in her inflection and the silence that followed, Alice knew it was her turn to speak but was still catching up to all that Lydia had just said. Without the aid of the visual cues of the person she talked to, conversations on the phone often baffled her. Words sometimes ran together, abrupt changes in topic were difficult for her to anticipate and follow, and her comprehension suffered. Although writing presented its own set of problems, she could keep them hidden from discovery because she wasn’t restricted to real-time responding.
“If you don’t want to, you can just say it,” said Lydia.
“No, I do, but—”
“Or you’re too busy, whatever. I knew I should’ve called Dad.”
“Lydia—”
“Never mind, I gotta go.”
She hung up. Alice had been about to say that she needed to check with John, that if he could break away from the lab, she’d love to come. If he couldn’t go, however, she wouldn’t fly across the country without him, and she’d have to make up some excuse. Fearful of getting lost or confused far from home, she’d been avoiding travel. She’d declined an offer to speak at Duke University next month and thrown out the registration material for a language conference she’d attended every year since she was a graduate student. She wanted to see Lydia’s play, but this time, her attendance would be at the mercy of John’s availability.
She held the phone, thinking about trying to call Lydia back. She hung up, thinking better of it. She closed her unwritten reply to Anna and opened a new email to send to Lydia. She stared at the blinking cursor, her fingers frozen on the keyboard. The battery in her brain was running low today.
“Come on,” she urged, wishing she could attach a couple of jumper cables to her head and give herself a good, strong zap.
She didn’t have time for Alzheimer’s today. She had emails to return, a grant proposal to write, a class to teach, and a seminar to attend. And at the end of the day, a run. Maybe a run would give her some clarity.
ALICE TUCKED A PIECE OF paper with her name, address, and phone number in her sock. Of course, if she became so confused that she didn’t know her way home, she might not have the presence of mind to remember that she carried this piece of helpful information on her person. But it was a precaution she took anyway.
Running was becoming less and less effective at clearing her thoughts. In fact, these days, she felt more like she was physically chasing down the answers to an interminable stream of runaway questions. And no matter how hard she kicked, she could never catch them.
What should I be doing? She took her medications, slept for six to seven hours a night, and clung to the normalcy of day-to-day life at Harvard. She felt like a fraud, posing as a Harvard professor without a progressive neurodegenerative disease, working every day as if everything were just fine and would continue that way.
There weren’t a lot of metrics for performance or day-today accountability in the life of a professor. She didn’t have books to balance, a certain quota of widgets to make, or written reports to hand in. There was room for error, but how much? Ultimately, her functioning would deteriorate to a level that would be noticed and not tolerated. She wanted to leave Harvard before then, before the gossip and pity, but had no way of even guessing when that would be.
And although the thought of staying on too long terrified her, the thought of leaving Harvard terrified her much, much more. Who was she if she wasn’t a Harvard psychology professor?
Should she try to spend as much time as possible with John and her children? What would that mean practically? Sit with Anna while she typed her briefs, shadow Tom on his rounds, observe Lydia in acting class? How was she supposed to tell them that they each had a 50 percent chance of going through this? What if they blamed and hated her like she blamed and hated her father?
It was too soon for John to retire. How much time could he realistically take off without killing his own career? How much time did she have? Two years? Twenty?
Although Alzheimer’s tended to progress more quickly in the early-onset versus late-onset form, people with early-onset usually lived with the disease for many years longer, this disease of the mind residing in relatively young and healthy bodies. She could stick around all the way to the brutal end. She’d be unable to feed herself, unable to talk, unable to recognize John and her children. She’d be curled up in the fetal position, and because she’d forget how to swallow, she’d develop pneumonia. And John, Anna, Tom, and Lydia would agree not to treat it with a simple course of antibiotics, riddled with guilt over feeling grateful that something had finally come along that would kill her body.
She stopped running, bent over, and threw up the lasagna she’d eaten for lunch. It would be several more weeks before the snow melted enough to wash it away.
SHE KNEW EXACTLY WHERE SHE was. She was on her way home, in front of the All Saints’ Episcopal Church, only a few blocks from her house. She knew exactly where she was but had never felt more lost in her life. The bells of the church began to chime to a tune that reminded her of her grandparents’ clock. She turned the round, iron knob on the tomato red door and followed her impulse inside.
She was relieved to find no one there, because she hadn’t formulated a coherent story as to why she was. Her mother was Jewish, but her father had insisted that she and Anne be raised Catholic. So she went to mass every Sunday as a child, received communion, went to confession, and was confirmed, but because her mother never participated in any of this, Alice began questioning the validity of these beliefs at a young age. And without a satisfying answer from either her father or the Catholic Church, she never developed a true faith.
Light from the streetlamps outside streamed in through the Gothic stained-glass windows and provided almost enough illumination for her to see the entire church. In each of the stained-glass windows, Jesus, clad in robes of red and white, was pictured as a shepherd or a healer performing a miracle. A banner to the right of the altar read GOD IS OUR REFUGE AND STRENGTH, A VERY PR
ESENT HELP IN TROUBLE.
She couldn’t be in more trouble and wanted so much to ask for help. But she felt like a trespasser, undeserving, unfaithful. Who was she to ask for help from a God she wasn’t sure she believed in, in a church she knew nothing about?
She closed her eyes, listened to the calming, oceanlike waves of distant traffic, and tried to open her mind. She couldn’t say how long she sat in the velvet-cushioned pew in that cold, darkened church, waiting for an answer. It didn’t come. She stayed longer, hoping a priest or parishioner would wander in and ask her why she was there. Now, she had her explanation. But no one came.
She thought about the business cards she’d been given from Dr. Davis and Stephanie Aaron. Maybe she should talk to the social worker or a therapist. Maybe they could help her. Then, with complete and simple lucidity, the answer came to her.
Talk to John.
SHE FOUND HERSELF UNARMED FOR the attack she faced when she walked through the front door.
“Where have you been?” asked John.
“I went for a run.”
“You’ve been running, this whole time?”
“I also went to church.”
“Church? I can’t take this, Ali. Look, you don’t drink coffee, and you don’t go to church.”
She smelled the booze on his breath.
“Well, I did today.”
“We were supposed to have dinner with Bob and Sarah. I had to call and cancel, didn’t you remember?”
Dinner with their friends Bob and Sarah. It was on her calendar.
“I forgot. I have Alzheimer’s.”
“I had absolutely no idea where you were, if you were lost. You have to start carrying your cell phone with you at all times.”
“I can’t bring it with me when I run, I don’t have any pockets.”
“Then duct tape it to your head, I don’t care, I’m not going through this every time you forget you’re supposed to show up somewhere.”
She followed him into the living room. He sat down on the couch, held his drink in his hand, and wouldn’t look up at her. The beads of sweat on his forehead matched those on his sweaty glass of scotch. She hesitated, then sat on his lap, hugged him hard around his shoulders with her hands touching her own elbows, her ear against his, and let it all out.
“I’m so sorry I have this. I can’t stand the thought of how much worse this is going to get. I can’t stand the thought of looking at you someday, this face I love, and not knowing who you are.”
She traced the outline of his jaw and chin and the creases of his sorely out of practice laugh lines with her hands. She wiped the sweat from his forehead and the tears from his eyes.
“I can barely breathe when I think about it. But we have to think about it. I don’t know how much longer I have to know you. We need to talk about what’s going to happen.”
He tipped his glass back, swallowed until there was nothing left, and then sucked a little more from the ice. Then he looked at her with a scared and profound sorrow in his eyes that she’d never seen there before.
“I don’t know if I can.”
APRIL 2004
As smart as they were, they couldn’t cobble together a definitive, long-term plan. There were too many unknowns to simply solve for x, the most crucial of those being, How fast will this progress? They’d taken a year’s sabbatical together six years ago to write From Molecules to Mind, and so they were each a year away from being eligible for taking another. Could she make it that long? So far, they’d decided that she’d finish out the semester, avoid travel whenever possible, and they’d spend the entire summer at the Cape. They could only imagine as far as August.
And they agreed to tell no one yet, except for their children. That unavoidable disclosure, the conversation they had agonized over the most, would unfold that very morning over bagels, fruit salad, Mexican frittata, mimosas, and chocolate eggs.
They hadn’t all been together for Easter in a number of years. Anna sometimes spent that weekend with Charlie’s family in Pennsylvania, Lydia had stayed in L.A. the last several years and was somewhere in Europe before that, and John had attended a conference in Boulder a few years back. It had taken some work to persuade Lydia to come home this year. In the middle of rehearsals for her play, she’d claimed she couldn’t afford the interruption or the flight, but John had convinced her that she could spare two days and paid for her airfare.
Anna declined a mimosa and a Bloody Mary and instead washed down the caramel eggs she’d been eating like popcorn with a glass of iced water. But before anyone could harbor suspicions of pregnancy, she launched into the details of her impending intrauterine insemination procedure.
“We saw a fertility specialist over at the Brigham, and he can’t figure it out. My eggs are healthy, and I’m ovulating each month, and Charlie’s sperm are fine.”
“Anna, really, I don’t think they want to hear about my sperm,” said Charlie.
“Well, it’s true, and it’s so frustrating. I even tried acupuncture, and nothing. Except my migraines are gone. So at least we know that I should be able to get pregnant. I start FSH injections on Tuesday, and next week I inject myself with something that will release my eggs, and then they’ll inseminate me with Charlie’s sperm.”
“Anna,” said Charlie.
“Well, they will, and so hopefully, I’ll be pregnant next week!”
Alice forced a supportive smile, caging her dread behind her clenched teeth. The symptoms of Alzheimer’s disease didn’t manifest until after the reproductive years, after the deformed gene had unwittingly been passed on to the next generation. What if she’d known that she carried this gene, this fate, in every cell of her body? Would she have conceived these children or taken precautions to prevent them? Would she have been willing to risk the random roll of meiosis? Her amber eyes, John’s aquiline nose, and her presenilin-1. Of course, now, she couldn’t imagine her life without them. But before she had children, before the experience of that primal and previously inconceivable kind of love that came with them, would she have decided it would be better for everyone not to? Would Anna?
Tom walked in, with apologies for being late and without his new girlfriend. It was just as well. Today should be just the family. And Alice couldn’t remember her name. He made a beeline for the dining room, likely worried that he’d missed out on the food, then returned to the living room with a grin on his face and a plate heaping with some of everything. He sat on the couch next to Lydia, who had her script in her hand and her eyes closed, silently mouthing her lines. They were all there. It was time.
“Your dad and I have something important we need to talk to you about, and we wanted to wait until we had all three of you together.”
She looked to John. He nodded and squeezed her hand.
“I’ve been experiencing some difficulties with my memory for some time now, and in January, I was diagnosed with early-onset Alzheimer’s disease.”
The clock on the fireplace mantel ticked loudly, like someone had turned its volume up, the way it sounded when no one else was in the house. Tom sat frozen with a forkful of frittata midway between his plate and mouth. She should have waited until he’d finished eating his brunch.
“Are they sure it’s Alzheimer’s? Did you get a second opinion?” he asked.
“She had genetic screening. She has the presenilin-1 mutation,” said John.
“Is it autosomal dominant?” asked Tom.
“Yes.”
He said more to Tom, but only with his eyes.
“What does that mean? Dad, what did you just tell him?” Anna asked.
“It means we have a fifty percent chance of getting Alzheimer’s disease,” said Tom.
“What about my baby?”
“You’re not even pregnant,” said Lydia.
“Anna, if you have the mutation, it’s the same for your children. Each child you have would have a fifty percent chance of inheriting it, too,” said Alice.
“So what do we do? D
o we go get tested?” asked Anna.
“You can,” said Alice.
“Oh my god, what if I have it? And then my baby could have it,” said Anna.
“There’ll probably be a cure by the time any of our kids would need it,” said Tom.
“But not in time for us, is that what you’re saying? So my kids will be fine, but I’ll be a mindless zombie?”
“Anna, that’s enough!” John snapped.
His jaw clenched, and his face flushed. A decade ago, he would’ve sent Anna to her room. Instead, he gave Alice’s hand a hard squeeze and jiggled his leg. In so many ways, he’d become powerless.
“Sorry,” said Anna.
“It’s very likely that there’ll be a preventative treatment by the time you’re my age. That’s one of the reasons to know if you have the mutation. If you do, you might be able to go on a medication well before you’re symptomatic and, hopefully, you never will be,” said Alice.
“Mom, what kind of treatment do they have now, for you?” asked Lydia.
“Well, they have me on antioxidant vitamins and aspirin, a statin, and two neurotransmitter drugs.”
“Are those going to keep the Alzheimer’s from getting any worse?” asked Lydia.
“Maybe, for a little while, they don’t really know for sure.”
“What about what’s in clinical trials?” asked Tom.
“I’m looking into that now,” said John.
John had begun talking to clinicians and scientists in Boston who researched the molecular etiology of Alzheimer’s, getting their perspectives on the relative promise of the therapies in the clinical pipeline. John was a cancer cell biologist, not a neuroscientist, but it wasn’t a huge leap for him to understand the cast of molecular criminals run amok in another system. They all spoke the same language—receptor binding, phosphorylation, transcriptional regulation, clathrin-coated pits, secretases. Like owning a membership card to the most exclusive club, being from Harvard gave him instant credibility with and access to the most respected thought leaders in Boston’s Alzheimer’s research community. If a better treatment existed or might exist soon, John would find it for her.