Still Alice(16)

By: Lisa genovr






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 PRESENT 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.