Still Alice

by Lisa Genova

Even then, more than a year earlier, there were neurons in her head, not far from her ears, that were being strangled to death, too quietly for her to hear them.

While the holy grail of this quest carried individual power and prestige, at its core it was a collaborative effort to know something valuable and give it to the world. It was socialism powered by capitalism. It was a strange, competitive, cerebral, and privileged life. And they were in it together.

She looked him directly in the eye. A colleague of hers had once told her that eye contact with another person for more than six seconds without looking away or blinking revealed a desire for either sex or murder.

Attention, rehearsal, elaboration, or emotional significance was needed if perceived information was to be pushed beyond the recent memory space into longer-term storage, else it would be quickly and naturally discarded with the passage of time.

She had experiments to perform, papers to write, and lectures to give and attend. Everything she did and loved, everything she was, required language.

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.

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.

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.

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.

Each of your children has a fifty percent chance of inheriting this mutation, which has a one hundred percent chance of causing the disease.

“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.”

She wished she had cancer instead. She’d trade Alzheimer’s for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she’d have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she’d be able to look them knowingly in the eye and say good-bye before she left.

And when the burden of her disease exceeded the pleasure of that ice cream, she wanted to die.

She returned, wrapped herself in the blanket, sat in one of the chairs, and opened her book to the dog-eared page. Reading was fast becoming a heartbreaking chore. She had to reread pages over and over to retain the continuity of the thesis or narrative, and if she put the book down for any length of time, she had to go back sometimes a full chapter to find the thread again.

I could not survive this

“Ali, don’t cry, it’s okay.” “I don’t know where I am.” “It’s okay, you’re right here.” “I’m lost.” “You’re not lost, Ali, you’re with me.”

“Where’s Anne?” “Anna’s in Boston, with Charlie.” “No, Anne, my sister, where’s Anne?” Lydia stared at her without blinking, all lightness drained from her face. “Mom, Anne’s dead. She died in a car accident with your mother.”

Why isn’t he upset, too? He’s known about this for a while, that’s why, and he’s been keeping it from me. She couldn’t trust him.

Neurons unable to connect effectively with other neurons atrophy. Useless, an abandoned neuron will die.

Facing her meant facing her mental frailty and the unavoidable thought that, in the blink of an eye, it could happen to them. Facing her was scary. So for the most part, except for meetings and seminars, they didn’t.

She knew that she had a daughter named Lydia, but when she looked at the young woman sitting across from her, knowing that she was her daughter Lydia was more academic knowledge than implicit understanding, a fact she agreed to, information she’d been given and accepted as true.

Keep what you have with him. Keep everything in balance—you and Charlie, your career, your kids, everything you love. Don’t take any of the things you love in your life for granted, and you’ll do it all. Charlie will help you.”

Even biographies not saturated with disease were vulnerable to holes and distortions.

What about support for the people with Alzheimer’s disease? Where are the other fifty-one-year-olds with dementia? Where are the other people who were in the middle of their careers when this diagnosis ripped their lives right out from under them?

They talked about her as if she weren’t sitting in the wing chair, a few feet away. They talked about her, in front of her, as if she were deaf. They talked about her, in front of her, without including her, as if she had Alzheimer’s disease.

“I’m making plenty of sacrifices,” said John. He’d always loved her, but she’d made it easy for him. She’d been looking at their time left together as precious time. She didn’t know how much longer she could hang on to herself, but she’d convinced herself that she could make it through their sabbatical year. One last sabbatical year together. She wouldn’t trade that in for anything. Apparently, he would.

“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?” “Then, I’ll tell you that I do, and you’ll believe me.” Alice liked that. But will I always love her? Does my love for her reside in my head or my heart?

The mother in her believed that the love she had for her daughter was safe from the mayhem in her mind, because it lived in her heart.

“No, John, it’s killing me, not you. I’m getting worse, whether you’re home looking at me or hiding in your lab. You’re losing me. I’m losing me. But if you don’t take next year off with me, well, then, we lost you first. I have Alzheimer’s. What’s your fucking excuse?”

More and more, she was experiencing a growing distance from her self-awareness. Her sense of Alice—what she knew and understood, what she liked and disliked, how she felt and perceived—was also like a soap bubble, ever higher in the sky and more difficult to identify, with nothing but the thinnest lipid membrane protecting it from popping into thinner air.

“My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.

“Nothing. Look, I understand and appreciate everything you’re saying. But I’m trying to make a decision that’s rational and not emotional.” “Why? What’s wrong with being emotional about this? Why is that a negative thing? Why isn’t the emotional decision the right decision?”

You have Alzheimer’s disease. You have lost too much of yourself, too much of what you love, and you are not living the life you want to live.

Swallow all of them with a big glass of water. Make sure you swallow all of them. Then, get in the bed and go to sleep. Go now, before you forget. And do not tell anyone what you’re doing.

I want you to know, you were the reason I chose linguistics as my field of study. Your passion for understanding how language works, your rigorous and collaborative approach to research, your love of teaching, you’ve inspired me in so many ways. Thank you for all your guidance and wisdom, for setting the bar so much higher than I thought I could reach, and for giving me plenty of room to run with my own ideas. You’ve been the best teacher I’ve ever had. If I achieve in my life a fraction of what you’ve accomplished in yours, I’ll consider my life a success.”

“Here, I wrote it all down for you, everything I just said, so you can read it whenever you want and know what you gave to me even if you can’t remember.”

She felt a smug thrill rush through her. Anne’s going to be so jealous.