Still Alice

by Lisa Genova

  “Okay, John, I would either remove the doorway thingies or paint them a contrasting color, something bright, or cover them in brightly colored tape, so Alice can notice them. Otherwise, they just blend into the floor.”

  “All right.”

  “Alice, tell me about your support group,” said Dr. Davis.

  “There are four of us. We meet once a week for a few hours at each other’s houses, and we email each other every day. It’s wonderful, we talk about everything.”

  Dr. Davis and that woman in that little room had asked her a lot of probing questions today, questions designed to measure the precise level of destruction inside her head. But no one understood what was still alive inside her head better than Mary, Cathy, and Dan.

  “I want to thank you for taking the initiative and filling the obvious gap we have in our support system here. If I get any new early stage or early-onset patients, can I tell them how to get in touch with you?”

  “Yes, please do. You should also tell them about DASNI. It’s the Dementia Advocacy and Support Network International. It’s an online forum for people with dementia. I’ve met over a dozen people there, from all over the country and Canada and the UK and Australia. Well, I’ve never actually met them, it’s all online, but I feel like I know them and they know me more intimately than many of the people I’ve known my whole life. We don’t waste any time, we don’t have enough of it. We talk about the stuff that matters.”

  John shifted in his seat and jiggled his leg.

  “Thank you, Alice, I’ll add that website to our standard packet of information. How about you, John? Have you yet talked with our social worker here or gone to any of the caregivers’ support group meetings?”

  “No, I haven’t. I’ve had coffee a couple of times with the spouses of her support group people, but otherwise, no.”

  “You might want to consider getting some support yourself. You’re not the one with the disease, but you’re living with it, too, by living with Alice, and it’s hard on the caregivers. I see the toll it takes every day with the family members who come in. There’s Denise Daddario, the social worker, here and the MGH Caregivers’ Support Group, and I know that the Massachusetts Alzheimer’s Association has many local caregiver groups. The resources are there for you, so don’t hesitate if you need them.”

  “All right.”

  “Speaking of the Alzheimer’s Association, Alice, I just received their program for the annual Dementia Care Conference, and I see you’re giving the opening plenary presentation,” said Dr. Davis.

  The Dementia Care Conference was a national meeting for professionals involved in the care of people with dementia and their families. Neurologists, general practice physicians, geriatric physicians, neuropsychologists, nurses, and social workers all gathered in one place to exchange information on approaches to diagnosis, treatment, and patient care. It sounded similar to Alice’s support group and DASNI, but bigger and for those without dementia. This year’s meeting was to be held next month in Boston.

  “Yes,” said Alice. “I meant to ask, will you be there?”

  “I will, I’ll be sure to be in the front row. You know, they’ve never asked me to give a plenary presentation,” said Dr. Davis. “You’re a brave and remarkable woman, Alice.”

  His compliment, genuine and not patronizing, was just the boost her ego needed after having been so ruthlessly pummeled by so many tests today. John spun his ring. He looked at her with tears in his eyes and a clenched smile that confused her.

  MARCH 2005

  Alice stood at the podium with her typed speech in her hand and looked out at the people seated in the hotel’s grand ballroom. She used to be able to eyeball an audience and guess with an almost psychic accuracy the number of people in attendance. It was a skill she no longer possessed. There were a lot of people. The organizer, whatever her name was, had told her that over seven hundred people were registered for the conference. Alice had given many talks to audiences that size and larger. The people in her audiences past had included distinguished Ivy League faculty, Nobel Prize winners, and the world’s thought leaders in psychology and language.

  Today, John sat in the front row. He kept looking back over his shoulder as he repeatedly wrung his program into a tight tube. She hadn’t noticed until just now that he was wearing his lucky gray T-shirt. He usually reserved it for only his most critical lab result days. She smiled at his superstitious gesture.

  Anna, Charlie, and Tom sat next to him, talking to one another. A few seats down sat Mary, Cathy, and Dan with their husbands and wife. Positioned front and center, Dr. Davis sat ready with his pen and notebook. Beyond them sat a sea of health professionals dedicated to the care of people with dementia. This might not be her biggest or most prestigious audience, but of all the talks she’d given in her life, she hoped this one would have the most powerful impact.

  She ran her fingers back and forth across the smooth, gemmed wings of her butterfly necklace, which sat, as if perched, on the knobby tip of her sternum. She cleared her throat. She took a sip of water. She touched the butterfly wings one more time, for luck. Today’s a special occasion, Mom.

  “Good morning. My name is Dr. Alice Howland. I’m not a neurologist or general practice physician, however. My doctorate is in psychology. I was a professor at Harvard University for twenty-five years. I taught courses in cognitive psychology, I did research in the field of linguistics, and I lectured all over the world.

  “I am not here today, however, to talk to you as an expert in psychology or language. I’m here today to talk to you as an expert in Alzheimer’s disease. I don’t treat patients, run clinical trials, study mutations in DNA, or counsel patients and their families. I am an expert in this subject because, just over a year ago, I was diagnosed with early-onset Alzheimer’s disease.

  “I’m honored to have this opportunity to talk with you today, to hopefully lend some insight into what it’s like to live with dementia. Soon, although I’ll still know what it is like, I’ll be unable to express it to you. And too soon after that, I’ll no longer even know I have dementia. So what I have to say today is timely.

  “We, in the early stages of Alzheimer’s, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It’s a very lonely and frustrating place to be.

  “I no longer work at Harvard. I no longer read and write research articles or books. My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can’t confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short-term memory is hanging on by a couple of frayed threads.

  “I’m losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I’d be hard-pressed to give you details. I might guess a few things correctly. I’m an excellent guesser. But I don’t really know. I don’t remember yesterday or the yesterday before that.

  “And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can’t offer it the names of the United States presidents in exchange for the names of my children. I can’t give it the names of the state capitals and keep the memories of my husband.

  “I often fear tomorrow. What if I wake up and don’t know who my husband is? What if I don’t know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that’s responsible for my unique ‘meness’ vulnerable to this disease? Or is my identity something that transcends neurons, pro
teins, and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimer’s? I believe it is.

  “Being diagnosed with Alzheimer’s is like being branded with a scarlet A. This is now who I am, someone with dementia. This was how I would, for a time, define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that.

  “I am a wife, mother, and friend, and soon to be grandmother. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia. Through an early-stage support group, through the Dementia Advocacy and Support Network International, by talking to you today, I am helping others with dementia live better with dementia. I am not someone dying. I am someone living with Alzheimer’s. I want to do that as well as I possibly can.

  “I’d like to encourage earlier diagnosis, for physicians not to assume that people in their forties and fifties experiencing memory and cognition problems are depressed or stressed or menopausal. The earlier we are properly diagnosed, the earlier we can go on medication, with the hope of delaying progression and maintaining a footing on a plateau long enough to reap the benefits of a better treatment or cure soon. I still have hope for a cure, for me, for my friends with dementia, for my daughter who carries the same mutated gene. I may never be able to retrieve what I’ve already lost, but I can sustain what I have. I still have a lot.

  “Please don’t look at our scarlet A’s and write us off. Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.

  “I encourage you to empower us, not limit us. If someone has a spinal cord injury, if someone has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses. Work with us. Help us develop tools to function around our losses in memory, language, and cognition. Encourage involvement in support groups. We can help each other, both people with dementia and their caregivers, navigate through this Dr. Seuss land of neither here nor there.

  “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.

  “I’m no longer asked to lecture about language at universities and psychology conferences all over the world. But here I am before you today, giving what I hope is the most influential talk of my life. And I have Alzheimer’s disease.

  “Thank you.”

  She looked up from her speech for the first time since she began talking. She hadn’t dared to break eye contact with the words on the pages until she finished, for fear of losing her place. To her genuine surprise, the entire ballroom was standing, clapping. It was more than she had hoped for. She’d hoped for two simple things—not to lose the ability to read during the talk and to get through it without making a fool of herself.

  She looked at the familiar faces in the front row and knew without a doubt that she had far exceeded those modest expectations. Cathy, Dan, and Dr. Davis beamed. Mary was dabbing her eyes with a handful of pink tissues. Anna clapped and smiled without once stopping to wipe the tears that streamed down her face. Tom clapped and cheered and looked like he could barely keep himself from running up to hug and congratulate her. She couldn’t wait to hug him, too.

  John stood tall and unabashed in his lucky gray T-shirt, with an unmistakable love in his eyes and joy in his smile as he applauded her.

  APRIL 2005

  The energy required to write her speech, to deliver it well, and to shake hands and converse articulately with what seemed like hundreds of enthusiastic attendees at the Dementia Care Conference would have been enormous for someone without Alzheimer’s disease. For someone with Alzheimer’s, it was beyond enormous. She managed to function for some time afterward on the adrenaline high, the memory of the applause, and a renewed confidence in her inner status. She was Alice Howland, brave and remarkable hero.

  But the high wasn’t sustainable, and the memory faded. She lost a little of her confidence and status when she brushed her teeth with moisturizer. She lost a bit more when she tried all morning to call John with the television remote control. She lost the last of it when her own unpleasant body odor informed her that she hadn’t bathed in days, but she couldn’t muster up the courage or knowledge she needed to step into the tub. She was Alice Howland, Alzheimer’s victim.

  Her energy depleted with no reserve to draw upon, her euphoria waned, and the memory of her victory and confidence stolen, she suffered under an overwhelming, exhausting heaviness. She slept late and stayed in bed hours after waking. She sat on her couch and cried without specific reason. No amount of sleep or crying replenished her.

  John woke her from a dead sleep and dressed her. She let him. He didn’t tell her to brush her hair or teeth. She didn’t care. He hurried her into the car. She leaned her forehead against the cold window. The world outside looked bluish gray. She didn’t know where they were going. She felt too indifferent to ask.

  John pulled into a parking garage. They got out and entered a building through a door in the garage. The white fluorescent lighting hurt her eyes. The wide hallways, the elevators, the signs on the walls: RADIOLOGY, SURGERY, OBSTETRICS, NEUROLOGY. Neurology.

  They entered a room. Instead of the waiting room she expected to see, she saw a woman sleeping in a bed. She had swollen, closed eyes, and IV tubing taped to her hand.

  “What’s wrong with her?” whispered Alice.

  “Nothing, she’s just tired,” said John.

  “She looks terrible.”

  “Shh, you don’t want her to hear that.”

  The room didn’t look like a hospital room. It contained another bed, smaller and unmade, next to the one the woman was sleeping in, a large television in the corner, a lovely vase of yellow and pink flowers on a table, and hardwood floors. Maybe this wasn’t a hospital. It could be a hotel. But then, why would the woman have that tube in her hand?

  An attractive young man came in with a tray of coffee. Maybe he’s her doctor. He wore a Red Sox hat, jeans, and a Yale T-shirt. Maybe he’s room service.

  “Congratulations,” whispered John.

  “Thanks. You just missed Tom. He’ll be back this afternoon. Here, I got everyone coffee and a tea for Alice. I’ll go get the babies.”

  The young man knew her name.

  The young man returned rolling a cart carrying two clear plastic, rectangular tubs. Each tub contained a tiny baby, their bodies entirely swaddled in white blankets and the tops of their heads covered in white hats, so that only their faces showed.

  “I’m going to wake her. She wouldn’t want to sleep through you meeting them,” said the young man. “Honey, wake up, we have visitors.”

  The woman woke up reluctantly, but when she saw Alice and John, an excitement entered her tired eyes and enlivened her. She smiled, and her face seemed to snap into place. Oh my, that’s Anna!

  “Congratulations, baby,” said John. “They’re beautiful,” and he leaned down over her and kissed her forehead.

  “Thanks, Dad.”

  “You look great. How are you feeling, okay?” asked John.

  “Thanks, I’m okay, just exhausted. Ready, here they are. This is Allison Anne, and this little guy is Charles Thomas.”

  The young man handed one of the babies to John. He lifted the other baby, the one with a p
ink ribbon tied to its hat, and presented it to Alice.

  “Would you like to hold her?” asked the young man.

  Alice nodded.

  She held the tiny, sleeping baby, her head in the crook of her elbow, her bum in her hand, her body up against her chest, her ear against her heart. The tiny, sleeping baby breathed tiny, shallow breaths through tiny, round nostrils. Alice instinctively kissed her blotchy pink, pudgy cheek.

  “Anna, you had your babies,” said Alice.

  “Yes, Mom, you’re holding your granddaughter, Allison Anne,” said Anna.

  “She’s perfect. I love her.”

  My granddaughter. She looked at the baby with the blue ribbon in John’s arms. My grandson.

  “And they won’t get Alzheimer’s like I did?” asked Alice.

  “No, Mom, they won’t.”

  Alice inhaled deeply, breathing in the scrumptious smell of her beautiful granddaughter, filling herself with a sense of relief and peace she hadn’t known in a long time.

  “MOM, I GOT INTO NYU and Brandeis University.”

  “Oh, that’s so exciting. I remember getting into school. What are you going to study?” asked Alice.

  “Theater.”

  “That’s wonderful. I used to go to Harvard. I loved it there. What school did you say you’re going to?”

  “I don’t know yet. I got into NYU and Brandeis.”

  “Which one do you want to go to?”

  “I’m not sure. I talked to Dad, and he really wants me to go to NYU.”

  “Do you want to go to NYU?”

  “I don’t know. It has the better reputation, but I like Brandeis better for me. I’d be near Anna and Charlie and the babies, and Tom, and you and Dad, if you stay.”

  “If I stay where?” asked Alice.

  “Here, in Cambridge.”