Lisa Genova - Still Alice

Brain atrophy.

"But this can't be possible, I'm only fifty."

"You have early-onset Alzheimer's. You're right, we typically think of Alzheimer's as a disease that affects the elderly, but ten percent of people with Alzheimer's have this early-onset form and are under the age of sixty-five."

"How is that different from the older form?"

"It's not, except that its cause usually has a strong genetic linkage, and it manifests much earlier."

Strong genetic linkage. Anna, Tom, Lydia.

"But if you only know for sure what I don't have, how can you say with any certainty that this is Alzheimer's?"

"After listening to you describe what's been happening and to your medical history, after testing your orientation, registration, attention, language, and recall, I was ninety-five percent sure. With no other explanation turning up in your neurological exam, blood, cerebral spinal fluid, or MRI, the other five percent goes away. I'm sure, Alice."

Alice.

The sound of her name penetrated her every cell and seemed to scatter her molecules beyond the boundaries of her own skin. She watched herself from the far corner of the room.

"So what does this mean?" she heard herself ask.

"We have a couple of drugs for treating Alzheimer's now that I want to put you on. The first is Aricept. It boosts cholinergic functioning. The second is Namenda. It was just approved this fall and has shown a lot of promise. Neither of these is a cure, but they can slow the progression of symptoms, and we want to buy you as much time as possible."

Time. How much time?

"I also want you to take vitamin E twice a day and vitamin C, baby aspirin, and a statin once a day. You don't show any clear risk factors for cardiovascular disease, but anything that's good for the heart is going to be good for the brain, and we want to preserve every neuron and synapse we can."

He wrote this information down on a prescription pad.

"Alice, does anyone in your family know that you're here?"

"No," she heard herself say.

"Okay, you're going to have to tell someone. We can slow the rate of cognitive decline that you've been experiencing, but we can't stop it or reverse it. It's important to your safety that someone who sees you regularly knows what's going on. Will you tell your husband?"

She saw herself nod.

"Okay, good. Then fill these prescriptions, take everything as directed, call me if you have any problems with side effects, and make an appointment to come back in six months. Between now and then, you can call or email me if you have any questions, and I would also encourage you to contact Denise Daddario. She's the social worker here and can help you with resources and support. I'll see you and your husband together then in six months, and we'll look at how you're doing."

She searched his intelligent eyes for something else. She waited. She became strangely aware of her hands clenching the cold metal arms of the chair she sat in. Her hands. She hadn't become an ethereal collection of molecules hovering in the corner of the room. She, Alice Howland, was sitting on a cold, hard chair next to an empty chair in a neurologist's office in the Memory Disorders Unit on the eighth floor of Massachusetts General Hospital. And she'd just been diagnosed with Alzheimer's disease. She searched her doctor's eyes for something else, but could find only truth and regret.

January nineteenth. Nothing good ever happened on that day.

IN HER OFFICE WITH THE door shut, she read through the Activities of Daily Living questionnaire that Dr. Davis had told her to give to John. This should be filled out by an informant, NOT the patientwas typed in bold at the top of the first page. The word informant, the closed door, and her pounding heart all contributed to a feeling of conspicuous guilt, like she was hiding in some Eastern European city, in possession of illegal documents, and the police were on their way, sirens blaring.

The rating scale for each activity ranged from 0 (no problems, same as always) to 3 (severely impaired, totally dependent on others). She scanned down the descriptions next to the 3s and assumed they represented the end stages of this disease, the end of this straight and short road that she'd been suddenly forced onto in a car with no brakes and no steering.

Number 3 was a humiliating list: Must be fed most foods. Has no control over bowel or bladder. Must be given medication by others. Resists efforts of caretaker to clean or groom. No longer works. Home or hospital bound. No longer handles money. No longer goes out unaccompanied. Humiliating, but her analytical mind became instantly skeptical of the actual relevance of this list to her individual outcome. How much of this list was due to the progression of Alzheimer's disease and how much was confounded by the overwhelmingly elderly population it described? Were the eighty-year-olds incontinent because they had Alzheimer's or because they had eighty-year-old bladders? Perhaps these 3s wouldn't apply to someone like her, someone so young and physically fit.

The worst of it came under the heading "Communications." Speech is almost unintelligible. Does not understand what people are saying. Has given up reading. Never writes. No more language. Other than misdiagnosis, she couldn't formulate a hypothesis that would render her immune to this list of 3s. It could all apply to someone like her. Someone with Alzheimer's.

She looked at the rows of books and periodicals on her bookcase, the stack of final exams to be corrected on her desk, the emails in her inbox, the red, flashing voice-mail light on her phone. She thought about the books she'd always wanted to read, the ones adorning the top shelf in her bedroom, the ones she figured she'd have time for later. Moby-Dick. She had experiments to perform, papers to write, and lectures to give and attend. Everything she did and loved, everything she was, required language.

The last pages of the questionnaire asked the informant to rate the severity of the following symptoms experienced by the patient in the past month: delusions, hallucinations, agitation, depression, anxiety, euphoria, apathy, disinhibition, irritability, repetitive motor disturbances, sleep disruptions, changes in eating. She felt tempted to fill in the answers herself, to demonstrate that she was actually perfectly fine and that Dr. Davis must be wrong. Then she remembered his words: You may not be the most reliable source of what's been going on. Maybe, but then she still remembered he'd said that. She wondered when the time would come that she wouldn't.

Her knowledge of Alzheimer's disease admittedly swept the surface only lightly. She knew that the brains of Alzheimer's patients had reduced levels of acetylcholine, a neurotransmitter important in learning and memory. She also knew that the hippocampus, a sea-horse-shaped structure in the brain critical for the formation of new memories, became mired in plaques and tangles, although she didn't really understand what plaques and tangles were exactly. She knew that anomia, a pathological tip of the tongue, was another hallmark symptom. 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.

And she knew there was more. There were layers of disturbing filth to uncover. She typed the words "Alzheimer's disease" into Google. Her middle finger was poised over the return key when two jolting knocks caused her to abort the mission with the speed of an involuntary reflex and hide the evidence. Without further warning or waiting for an answer, the door opened.

She feared her face read stunned, anxious, devious.

"Are you ready?" asked John.