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? Do 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.
“But Mom, you seem perfectly fine. You must’ve caught this really early on, I wouldn’t even know anything was wrong,” said Tom.
“I knew,” said Lydia. “Not that she had Alzheimer’s, but that something was wrong.”
“How?” asked Anna.
“Like sometimes she doesn’t make any sense on the phone, and she repeats herself a lot. Or she doesn’t remember something I said five minutes ago. And she didn’t remember how to make the pudding at Christmas.”
“How long have you noticed this?” asked John.
“At least a year now.”
Alice couldn’t trace it quite that far back herself, but she believed her. And she sensed John’s humiliation.
“I have to know if I have this. I want to get tested. Don’t you guys want to get tested?” asked Anna.
“I think living with the anxiety of not knowing would be worse for me than knowing, even if I have it,” said Tom.
Lydia closed her eyes. Everyone waited. Alice entertained the absurd idea that she had either resumed memorizing her lines or fallen asleep. After an uncomfortable silence, she opened her eyes and took her turn.
“I don’t want to know.”
Lydia always did things differently.
IT WAS ODDLY QUIET IN William James Hall. The usual chatter of students in the hallways—asking, arguing, joking, complaining, bragging, flirting—was missing. Spring Reading Period typically precipitated the sudden sequestering of students from the campus at large into dormitory rooms and library cubicles, but that didn’t begin for another week. Many of the cognitive psychology students were scheduled to spend an entire day observing functional MRI studies in Charlestown. Maybe that was today.
Whatever the reason, Alice relished the opportunity to get a lot of work done without interruption. She had opted not to stop at Jerri’s for tea on the way to her office and wished now that she had. She could use the caffeine. She read through the articles in the current Linguistics Journal, she put together this year’s version of the final exam for her motivation and emotion class, and she answered all previously neglected emails. All without the phone ringing or a knock on the door.
She was home before she realized that she’d forgotten to go to Jerri’s. She still wanted that tea. She walked into the kitchen and put the kettle on the stove. The microwave clock read 4:22 a.m.
She looked out the window. She saw darkness and her reflection in the glass. She was wearing her nightgown.
Hi Mom,
The IUI didn’t work. I’m not pregnant. I’m not as upset as I thought I’d be (and Charlie seems almost relieved). Let’s hope my other test comes back negative as well. Our appointment for that is tomorrow. Tom and I will come over after and let you and Dad know the results.
Love,
Anna
THE ODDS OF THEM BOTH being negative for the mutation descended from unlikely to remote when they still weren’t home an hour after Alice had anticipated their arrival. If they were both negative, it would have been a quick appointment, a “you’re both fine,” “thank you very much,” and out-the-door appointment. Maybe Stephanie was just running late today. Maybe Anna and Tom had sat in the waiting room much longer than Alice had allowed for in her mind.
The odds crashed from remote to infinitesimal when they finally walked through the front door. If they were both negative, they would have just blurted it out or it would have sprung, wild and jubilant, from their facial expressions. Instead, they muscled what they knew beneath the surface as they moved into the living room, stretching out the time of Life Before This Happened as long as possible, the time before they’d have to unleash the hideous information they so obviously held.
They sat side by side on the couch, Tom on the left and Anna on the right, like they had in the backseat of the car when they were kids. Tom was a lefty and liked the window, and Anna didn’t mind the middle. They sat closer now than they ever did then, and when Tom reached over and held her hand, she didn’t shriek, “Mommm, Tommy’s touching me!”
“I don’t have the mutation,” said Tom.
“But I do,” said Anna.
After Tom was born, Alice remembered feeling so blessed, that she had the ideal—one of each. It took twenty-six years for that blessing to deform into a curse. Alice’s facade of stoic parental strength crumbled, and she started to cry.
“I’m sorry,” she said.
“It’s going to be okay, Mom. Like you said, they’re going to find a preventative treatment,” said Anna.
When Alice thought about it later, the irony was striking. Outwardly, at least, Anna appeared to be the strongest. She did most of the consoling. And yet, it didn’t surprise her. Anna was the child who most mirrored their mother. She had Alice’s hair, coloring, and temperament. And her mother’s presenilin-1.
“I’m going to go ahead with the in vitro. I already talked with my doctor, and they’re going to do a preimplantation genetic diagnosis on the embryos. They’re going to test a single cell from each of the embryos for the mutation and only implant ones that are mutation-free. So we’ll know for sure that my kids won’t ever get this.”
It was a solid piece of good news. But while everyone else continued to savor it, the taste turned slightly bitter for Alice. Despite her self-reproach, she envied Anna, that she could do what Alice couldn’t—keep her children safe from harm. Anna would never have to sit opposite her daughter, her firstborn, and watch her struggle to comprehend the news that she would someday develop Alzheimer’s. She wished that these kinds of advances in reproductive medicine had been available to her. But then the embryo that had developed into Anna would’ve been discarded.
According to Stephanie Aaron, Tom was okay, but he didn’t look it. He looked pale, shaken, fragile. Alice had imagined that a negative result for any of them would be a relief, clean and simple. But they were a family, yoked by history and DNA and love. Anna was his older sister. She’d taught him how to snap and blow gum bubbles, and she always gave him her Halloween candy.
“Who’s going to tell Lydia?” asked Tom.
“I will,” said Anna.